Two plus one equals five

The big lie at the spelling bee

2012-01-28T04:18:00.005-07:00

Dear Dr.* Douchebag (aka Mr. Moron),

It has taken a number of years of ignoring you, but you have been caught perpetrating the big lie, for what I hope will be the last time in our children's lives. The first of many times you perpetrated the big lie was when our daughter Elsa was in the first grade. She was clearly ahead of the other children in her class for literacy and had a teacher who at the time seemed incapable of providing enrichment within her own classroom to meet Elsa's needs. We met with the teacher and agreed that she was several grade levels ahead and needed to go to another class for her reading. This teacher made the fatal mistake of getting you involved since she was new to the school and I guess didn't know yet to run screaming from your involvement.

You decided that Elsa could not go to another class to be educated at her level. This request had been received at the school many times and never granted and you didn't want to be the one to set precedent. Indeed. Wait, you thought it would be a good idea to send her into her twin sister's class where the teacher had more experience to teach many levels at once. I guess that little lie made it impossible for you not to grant our request to put the girls in the same class from that year on. But wait, that was a precedent too wasn't it? No other twins had ever been allowed to be in the same class before that. Hmmmm? Maybe you should run for Congress? You are a waffler amongst men. But don't get me started on your misogynist tendencies. This is about lies, remember?

You also brought in an instructional coach who was supposed to be helping the teacher. We found out that she was actually teaching Elsa and Elsa saw her as a teacher as well. We weren't OK with our daughter having so many adults in her life when the outcome of Elsa being taught at her level was clearly not going to be met in this manner. All because you didn't want to set precedent? When we brought up that Elsa was already going to another room and having two additional adults in her life as justification for the ease of moving her into another class for literacy, you waffled again. Then the big fat lie came out of your mouth and with those words we pulled our daughter out of school for literacy and my short foray into homeschooling began.

We can't put Elsa into a higher grade. Those are not her peers.

We knew right there and then that we were never going to see eye to eye on anything. Dr. Douchebag (who was Mr. Moron at the time) didn't know anything about advanced children or their development, hell might not even know much about children at all. He lied again when he told us she couldn't be tested for giftedness until third grade. We of course scheduled testing for her immediately. Were the children in her current classroom her peers? Definitely not. They all saw her as different, and while there are more children who stand amongst her in her current grade than ever before, from the beginning of time Elsa has been far more advanced academically and emotionally. The darn kid just doesn't test well and that will stand in her way her whole life because administrators see numbers. Luckily, every other year a teacher sees the person behind the numbers and runs with it. There has come a time when every other year isn't enough.

She had a right then and now to be exposed to individuals on her level, above it, even below it, to receive a deep awareness of all that education has to offer. Not a watered down facade of a reality that will never exist outside the halls of a subpar elementary school. Had she been allowed to blossom and soak in the knowledge she sought with professional teachers and not just her laptop and a library card and a harried mom of three, she might well be a totally different person. Not the one beat down and hopeless after being so let down. She learned that she would talk and no one would listen and when bullied the perpetrator had all the rights and the victim none. And there was nothing her irate mom and a parent coalition could do about it when a superintendent and school board were more worried about test scores and budget cuts than students. That is not the world I want my daughter to see or believe in.

And so, the big lie is like this. The world is in fact made up of all kinds of people who are not your age or race or gender or intelligence, and yet they are your peers, competitors even. Turns out they are not even in your grade level. You are told your whole elementary career that you are in grade 1, 2, 3, 4 and this is what you will learn and be expected to know. Then one day reality hits. You are in a spelling bee and it turns out you are competing with 4th, 5th, and 6th graders even though your number says 4. You are required to know everything you have been taught and yet were supposed to know, even though no one told you, wait actually LIED to you that you didn't need to know, everything in the two grades ahead of you. That's the real world. There isn't a list you get to study in advance of life's tests. No one tells you that you are going to be required to know things no one taught you and didn't anticipate. You have to figure it all out for yourself. You are toast if you believe the big lie that if you do as you are told and stay with your peers you will be prepared or have any chance of being ahead of the curve. You don't get a fucking trophy or ribbon just for showing up. You have to work hard and other people will take credit for your work and you will have to fight to earn every atta boy you get. Even harder if you happen to be a woman. You will even get paid less, but let's not open that can of worms.

I feel like I let my girls down. I knew it was a lie. I thought I could live with it. But watching my 10 year old cry because she didn't win the spelling bee, well, I felt like shit. Sure, Elsa only had two days to study because of our vacation, and the instructions were not at all clear that she needed to study the words for all the grades and would be competing against them. But it was my fault because I had promised to never lie to them about the world. I wanted to protect them, sure, but I didn't want to raise them so sheltered that they called me the first week they left the house and screamed "why didn't you tell me this was going to happen?" I get that they wouldn't believe me until they saw it with their own eyes, but I wanted to show them what could happen. Most importantly I wanted to give them the most strength and invincibility and resilience that I could. For this spelling bee, I failed. I knew in life you are always up against tough competitors that have advantages of having done this already and somehow figured out the rules to the game that are unwritten and even lied about.

As Brady told me, "Elsa cried. Tell Elsa to tell her spelling teacher that she was just spelling words in Spanish." Yep, that makes more sense than telling a first grader you can't learn with the people you are going to be competing against in real life because elementary school doesn't acknowledge that reality. I can't stop my kids from crying or being upset, but I don't want them to be let down because I let a lie fester which gives them the false confidence that if they just memorize a list they are going to win. The truth is that their peers are all other caring, feisty, compassionate, funny, passionate, wise-cracking, intelligent, fun-loving, amazing people who want to make a difference in the world.

Dr. D-Bag was right about one thing: we didn't want Elsa to miss out on being around her peers either. The thing he was wrong about is that age or grade level or any other classifying term is not the defining characteristic of a peer. That lie is absolutely behind every dark moment in history from a segregated society to concentration camps. If we do not give each and every person the same chance to succeed no matter their age or gender or skin color, we have failed at being human.

I believe if we all do our best and fight for what we believe in, the world can change. We are all responsible for what we leave behind. Even though it is not what I would have chosen as an outcome, I know I will leave behind a changed school and more aware administration so that hopefully the next child who shows up that doesn't fit into the box is allowed to poke a little hole and at least see what's outside, if not cut out a window or door until all kids of all abilities are free from harm and inspired to achieve at their level regardless of whether it is far above or below the curve. That no matter what the policy says, everyone does right by every child every day. And when people make mistakes they admit it, learn from it, and move on. Moving on sounds like a very good plan. I have given and taken everything I can from a world I don't believe in.

Douche. D-O-U-C-H-E Douche That is correct. (turns out douche bag is two words, damn it!)

Lie. L-I-E Lie. That is correct.

Goodbye. G-O-O-D-B-Y-E. Goodbye. That is correct.

*Oh, right, I remember, we thought you weren't watching out for the best interests of our kids because you had small children of your own at home. Turns out you were working on your doctorate so as to more effectively step on our children's heads on your way to bigger and better things! Maybe in other people's worlds doctors might automatically get more respect, but in mine doctors, more than anyone else, have to earn it. I have probably never respected anyone less.

My mom thinks I should send a version of this letter to the principal, school board, and superintendent. I don't think I can take out the word douche bag. Anyone else think it would make a difference?

Travel, tonsils, and we are one screwed up happy family

2012-01-26T07:29:00.002-07:00

Brady finally slept through the night for the first time since getting his tonsils and adenoids removed on Monday. Luckily the surgery went smoothly and he did not have a regression from anesthesia. Have I mentioned how crazy I am? Sometimes I think doing things last minute and completely jam packed leaves less opportunity for anxiety over the all things that could go wrong! Sometimes. Although I normally do not live spontaneously or as intensely (at least on purpose) so I can't say for sure. But planning a family vacation for a family of five around all of our medical appointments and treatments was a little much even for me!

We had Brady's IVIG on a Thursday which he did not tolerate as well since it was in a new satellite location and grandma wasn't there to help get his IV in place stress free. The most important thing is keeping the experience, well his life in general, stress free. There was a last minute cancellation in the sleep clinic so Elsa went for her sleep study on Friday night (we are worried about sleep apnea, recent attention changes, snoring, as well as her constant flopping at night like a fish out of water). The weekend was for packing, shopping, and picking up prescriptions. Then we left for Florida on a Monday (I flew with the kids on my own). After finally getting out of the airport in our brand new rental minivan, drove to Whole Foods where Brady had a DEFCON 1 meltdown since he had been up since 4 AM. Luckily he fell asleep during the drive to the Cocoa Beach condo we rented and immediately had an early dinner (me an airport salad and the kids noodles with Earth Balance as we didn't get spaghetti sauce in the aisle where we abandoned our cart due to the aforementioned nuclear catastrophe) so we could run on the sand and Brady could hurdle jump over the waves. Nothing makes me happier than squealing kids amidst crashing waves. It has been an awful year for everyone and we all needed to laugh and smile again and remember what it's like to enjoy each other's company and not merely exist barking orders at each other.

I took the kids to Kennedy Space Center on Tuesday in the morning and drove the hour trek back to the airport in the nighttime, earning our stripes in the toll booths all along the way. We picked Brian up and the family part of our vacation began. Did I mention that we left our door open every night and could hear the waves crashing and drank our coffee to the same sweet music each morning on the balcony? We just threw the kids on East Coast time and left for Seaworld on Wednesday and Legoland on Thursday.

Then Friday arrived and I woke up early, wondering what we would learn at Brady's appointment. We had been having a great time as a family and luckily finding all kinds of allergen friendly snacks and dining. That made the trip worth it already, but we really had come to have someone else look at all that we were doing and make sure we were on the right track. We were with the Dr. for one hour and fifty minutes, Brady quietly playing on the floor behind us, the girls firmly planted in the waiting room with their homework and books, snacks and bathroom at their ready. Elsa completely drained the battery on my iPhone in that amount of time. The thing I missed most from home? My car charger and back up camera! I could move to Florida tomorrow and be completely content if I had those things.

We went over the history and current treatments. He did say that we could eventually raise the level of his mito supplements, but that all that we were doing to increase speech, eye contact, and energy level, also amps up that fun OCD part of the brain so there was a need for a delicate balance. HBOT is one category he said that can be extremely helpful but at the same time problematic for PANDAS kids. Good to know my gut on this one was dead on. He gave us a list of supplements to introduce with dosages, order, and instructions to start each one and wait at most 3-5 days between new supplements. He said basically we want to support him and monitor results as quickly as we can without leaving him unsupported for longer than absolutely necessary. Once these supplements are on board, we can consider medications if he is still not where we want him to be. I had no idea that even the 24 hour EEG misses 20% of seizures, so one thing to consider is a low dose anti-seizure medication and also an alzheimer's drug called Namenda that has been studied, albeit not specifically approved for use, in autism. We left with studies of each recommended treatment, with more emailed to us later, to help us learn about and make decisions about what treatments to choose.

When you are doing this on your own, you research all the different options but sometimes are just guessing what will be the most effective, in a random order, and don't always move as quickly as when you have someone else's opinion weighing in. You hesitate because you won't want to make a mistake. When you are in a crises, there is less to fuck up so you tend to act more decisively. What is that saying, danger creates opportunity?

I left feeling underwhelmed, because you think: here is this famous Dr. who is going to solve all your problems, see the one thing you are missing, and take care of it (or at least tell you how to take care of it). Then you are reminded that why you sought his help was so that you weren't on your own, weren't missing anything, and getting confirmation that all that you were doing was correct, but just needed a little tweaking should be reassuring. After a day, it was reassuring, and helpful to have confirmation that I wasn't a complete idiot and should have long figured this out by now. It felt good to not be on our own for the very first time.

I kept hearing the voices in my head of so many "professional recovery experts" like the new DAN Dr. up North and other parents who recovered their kids using different means saying to me that this famous Florida Dr. was going to tell us Brady needed IV chelation and HBOT and had PANDAS and mito dysfunction. The truth is he did say it's PANDAS by definition, but whether it reached the level of sydenham's chorea no one could say definitively without a cam kinase test which you can't get anymore. What the SC diagnosis might get is access to PEX, which a PANDAS diagnoses would not get, and a layer of credibility without the controversy. He also didn't want to change anything else that was working, even the chelation method right now. It was also amazing to be forming a partnership with our son's recovery and not have a dictator. I think it helped that I didn't act like one either. I really listened to his opinion and plan to follow it because I have the confidence that he will take it seriously and stick with it when the shit hits the fan.

He also looked me straight in the eye and told me how very fortunate and lucky we were that the developmental pediatrician pulled the throat culture because without it we'd be hanging out there without anything. I know how lucky we are and how amazing it is that Brady has received so much amazing help from really talented people and I say my thanks when my head hits and rises from the pillow each day and night.

He ordered a bunch of blood tests, so we decided to go ahead and do an IV glutathione treatment at the same time. Might as well get some bang for your buck for that poke! The labs included ammonia, lactic acid, carnitine, CK, plasma amino acids, acylcarnitine, strep titers ASO and anti -DNAse(monitoring them periodically to see if they go down will be important), vitamin D, CBC, CMP, cholesterol, ferritin, and folate antibody testing. We are supposed to schedule a follow up call in 4-6 weeks to go over testing and review progress on supplements. The gist is to calm, calm, calm that part of the brain antagonized by the autoimmunity so that he gets back to baseline. Then we can move on to amping up the energy in his cells to improve those aspects that still need support.

I did ask him at the end if he had seen kids like Brady who had regressed more than once, even after getting into the realm of recovery, and yet come back and go on to recover completely. He said that he absolutely had, but that he had also seen them regress again so it was important to work to prevent this but know it was possible. There were no guarantees. He also said something interesting that I don't think he would have said in our originally scheduled hour and a half had I not pressed and gone over in time. He got his questions answered so I wanted mine answered, even if I had to pay extra to get them. He said that in the long run, we may find that if this has never happened to Brady, we certainly wouldn't be looking in depth at all of this other angles such as oxidative stress and mito function, and that because of the support we praovide in these areas, he may end up doing even better than he would have if he had never had this regression.

Moving forward he suggested that we either raise his IVIG dose or do them every 21 days, and that he agreed that after six months we would know whether this intervention was going to stick or if we needed to move on to other treatments. He thinks that since Brady had been out there so long without treatment may mean it takes longer to get rid of the autoantibodies since they have been around longer. He also said something interesting that kids who have an autism diagnosis first and then PANDAS are often tougher to treat. Those kids who were one hundred percent typical are the ones who can have just one IVIG and recover, but kids like Brady often need much, much more. I had already decided to bump up the dose on his next IVIG treatment (not sure about the one after that).

SO we will be trying all these new calming supplements, a higher dose IVIG, and hopefully the new tests and treatments will get us to a baseline that we can propel off of. I think in a week Brady will be doing much better from his tonsillectomy that he had the day after we returned from vacation (yep that was a bit crazy, but at the same time didn't give any time to worry about how it would go. You had no time to think, just act.) that we can start introducing supplements one at a time.

The day after the appointment we went to Busch Gardens and Brady had had enough. The night after the IV glutathione I noticed a huge jump in motor planning and gross motor skills, but I didn't think that was one of the effects so we will see what the Dr. says about that. He could have been crashing from that or just tired of being out of routine and walking so much. We had a great time in Florida and didn't want to leave on Sunday. We could have stayed a month and it not be long enough. Makes me want to enroll the kids in online school so we could do things like that off season!

On Tuesday, aka one day post T & A, I took Abby back to her Dr, since her stomach is hurting so bad we had to put her back on prevacid. I was thinking of redoing the allergy panel but the Dr. mentioned doing the celiacs stool test. I have heard good things about it's reliability, but wondered out loud what we would do differently than we are already doing. It sounds like more monitoring, more diligence with diet, maybe even a scope if needed. I do want her to be pain free, and also get her energy back, plus she dropped from the 50th percentile for weight to the 10th percentile so we know she is not absorbing the nutrients she should be. I will need to think more about that. We did do a test for h. pylori because that can lead to stomach upset and subsequent acid could be a contributing factor to her lingering and recurrent laryngitis. She also said her T3 being lower than the top third is adrenal related so I am getting Abby on some of the mito supplements, raising her probiotics, adding in some adrenal support, and bumping up her multivitamin. I think I'll also do temps and maybe see about getting her in to a thyroid Dr. if we don't get symptom improvement.

Oh, and did I mention that we heard from Elsa's sleep study that she doesn't have apnea, but rather "periodic limb movement disorder." Otherwise known as restless leg, but apparently it is not just her legs. The recommendation is to check her ferritin level. Low ferritin could also be a factor in a lack of attention so that would be interesting.

I cannot believe that I am, the one who has been a hot allergic mess her whole life, the healthiest member of my family right now. Even the dog is scheduled for a throat culture next week! The Dr. said just treating is not enough, you need to treat, and then culture to make sure he is not a strep carrier.

All of this can be summarized to say that we have a genetic predisposition to not be able to detoxify our own bodies, we accumulate toxins (metals), these derange mineral transport, and the result is thyroid and adrenal stress as well as autoimmunity. The cure for all of these issues is chelation. But what doesn't agree with me is, OK, so you chelate, then what? What stops your body from not starting the cycle all over again? I guess supporting supplements that keep your pathways moving and glutathione up so you detoxify, but then why does recovery equal no supplements or special diets? I am still working on that question. But what it all means is that we are one happy unhealthy family. And I'm not going to be sleeping through the night on the weekends for a very, very long time!

Plane or treatment? Both!

2012-01-12T05:19:00.004-07:00

It's 4:30 AM and I'm up, might as well prepare for battle. Think of getting ready for an IVIG treatment like a transcontinental flight, except you can get up and go to the bathroom whenever you want. You pack clothes, new books, games, and toys, just like you would for your child if you were getting ready for a long flight (wait I'm also getting ready for an actual flight. This is going to get confusing!) You load all this up in the car and have to figure out how to lug it all the way while dealing with an apprehensive child. The main difference is that the airport has a bar and the hospital doesn't. I'm just saying.

You have to arrive early before your treatment begins, accounting for traffic or snow or sloppy roads. Once you check in and wait for your name (flight) to be called, you have to get your weight, temperature, blood pressure. It is not a good idea to start up your electronic devices before the IV is in because they will be needing those arms and trying to get a kid to turn off their ds to have a needle stuck in them, um, let's say is not recommended.

You could fire off a few tweets or facebook posts mocking the situation, but I have never done so. I'm not as handsome as Alec Baldwin so I don't think I could get away with it. Plus, what am I going to do, "check in" at the hospital or tweet that here we go again, it's that time of the month to treat my son's autoimmune mediated neurological illness with intravenous immunoglobulin therapy? Gotta be way over the character limit.

Before the line even gets put in, they pre-medicate with ibuprofen, benadryl, and zofran. While this is kicking in they order the IVIG from the pharmacy which takes a while. Maybe a half hour later (time does seem to stop) at the earliest, they put his IV in and start his fluids. Ironically, I think the fact that they so clearly state everything they are doing to him before and while they are doing it, and it is the same each time, this has contributed to his ability to learn multi step storytelling.

The IVIG finally arrives and you take off. They just hang the bag and add it to the line and it drips in, and slowly ramps up with 3-4 levels of increasing rate of infusion via the small digital pump attached to his IV pole. Did I mention plug that bad boy in when you are not moving about the room? The slow pace allows the body to adjust and to measure side effects. Within two hours his eyes are glowing, he is eating his second lunch, and we are playing and talking and spending lots of one on one time together.

You never know how long you will be there, if there are complications or delays. You need to prepare for anything. I often buy at least one new lego set and book or toy to peak his interest when he is just done or he is having a not feeling great moment. This will be our first time doing the infusion at the satellite center and not the main hospital, and also the first time without my mom there. It will be challenging to be on my own, but luckily Brady usually has therapy on Thursday afternoons so she is just coming to the infusion center instead to play with him and give me a break.

At Brady's appointment with his neurologist we found out that she wants him to keep doing monthly IVIGs until he has been on the antibiotics for three months to ensure that he keeps his gains and that he is being treated during the period of time his body could still be producing autoantibodies. So, including this one, it's three more and a total of 6 until we next see her. We will reevaluate at that time whether he is back to baseline all of the time and adding skills, just as a typically developing five-year-old would be doing.

I am ecstatic that she is developing a long term care plan for Brady should the treatment become ineffective. She is not just leaving him out there to see how it goes, she doesn't want to risk regression and the long game of catch up we have been playing for more than half a year. The increasing level of intervention if needed would be: first raise the dose of his IVIG, then do a short burst of steroids, move on to Cellcept, then Rituximab with IVIG combo. She would pursue mitochondrial testing at that time if he is regressing and none of the immunomodulatory therapies are working.

She spent an hour answering my questions and going over the different levels of treatment and testing available as options to us. What she offered above all was hope that she would stick with us to figure this out and get him better. Every question I asked, she not only had an answer for as it related to Brady's case, but had familiarity with, including exchanges with fringe scientists and treatments. She even said that while Dr. Kelley's work is controversial, that all scientists can be seen in this regard until they win the Nobel prize so that while she is not against the testing, she thinks mito is such a challenging disorder to uncover, that we should focus on the autoimmune piece we know for sure he has and move on if that doesn't resolve all of his issues. She also thinks in about a years time the genetics for uncovering the mito dysfunction will be there so we should wait it out, as long as he is no longer regressing. She even went back over his labs to see if he might be a candidate for cerebral folate deficiency, but his numbers were completely in the middle of the range. I have never had a more comprehensive, in-depth intelligent conversation with a traditional medical doctor. I am really thankful and amazed that she is on Brady's team!

We talked a lot about what to call what Brady has, given that he has features of both sydenham's chorea and Hashimoto's. She has another little boy exactly like Brady: no rise in strep titres but abnormal thyroid values, and clearly something autoimmune going on given response to treatment. That is when she described writing up the long term care plan so that it is not just some crazy mom trying to describe what he has without a diagnostic label. The two statements that most struck me in our appointment were:

What we don't know is if we are dealing with something that I am not sure anyone is even looking at or studying: an immunological mitochondrial dysfunction

I am a medical doctor, I don't work in a lab. Scientists can argue over here about what to call things (PANDAS, etc.), the feasibility of etiologies and viability of treatments. But when I see a patient in clinic who has gotten better from a treatment I have prescribed, I can't argue with that. No one can. That's medicine, not science.

That's when I realized where we have gone wrong. And I can't argue with Brady getting better, no one can. I don't care what you call it, but treat it. If each patient were treated individually, it would be about the medicine and not the science.

Off to battle...then catch a plane!

A new opportunity

2012-01-09T06:07:00.003-07:00

My mom was once again in town for Brady's IVIG. It is such a special time to be able to catch up with her and for Brady to have both of us to just focus on helping him get through this. I feel very fortunate that we will both have a positive memory of this rough time in his life.

The neurologist prescribed EMLA numbing cream to put on both arms at the IV site to help take away some of the pain and discomfort of the procedure. We arrived early enough to pull over at the McDonald's by the hospital to take a quick bathroom and coffee break after the commute, change him out of his pajamas, and "apply a chocolate kiss amount to both inner elbow creases and cover with plastic wrap." Oh yeah, this is living baby. And I kid you not those are the actual instructions on the prescription box! Brady said, "this is weird." Um, yeah.

We got the same sweet nurse as last time. She is not only sweet but conscientious that the orders get followed to the letter and our wishes are observed. Unfortunately, Brady's vein blew but she knew that we had told him only one poke so she went to get another nurse so that maybe he wouldn't think we were lying and meant only one poke from her. Ironically the new nurse chose to use his hand so the numbing cream was moot!

After about two hours this time his eyes started sparkling. He was markedly different. I should be taking videos it is that spectacular. It took longer for the appetite increase, but it kicked in and he ate like crazy all day. I wish he could have a day every day like his is during his infusion. He plays and talks and his eyes shine and he looks the closest he ever has to any NT in any waiting room any day. Luckily this time grandpa was at home with the girls so we didn't need to worry about picking them up or arranging care for them. We could really take our time without worry, finishing the knitting of a scarf for Brady's neurologist and alternating lunch or coffee and bathroom breaks. I even did some Christmas shopping in the gift shop for a special gift for grandma! It was definitely nicer having our own room again rather than sharing. I was even able to take a little extra time and drop off gifts for Brady's doctors at the volunteer office to be delivered.

During this IVIG process I have learned more about my son's struggles, from his own voice or by observing his behavior, than through any other intervention thus far. It really motivates me to figure everything out, not settle for anything less than full recovery, and not settle for symptom improvements anymore. I don't want him to just look better to others, I want him to be better for himself. When I see him smiling again, or laughing and playing with his sisters again, I am driven to continue fighting.

I have also learned that I cannot do this on my own. I have tried and given it my all, but it isn't the only thing I have to do day in and day out, plus there is a little thing about lacking medical training (although at this point I might need to just go and get some!) I am really excited to have the opportunity to take Brady to a new Dr. who can finally integrate all his traditional and alternative treatments and get us back on the road to recovery. It feels like the hugest weight in the world has been lifted. It doesn't hurt that we get to take the whole family and make a vacation out of the trip to the sunshine when there is snow on the ground here!

I have made a list of the areas that showed changes after each of Brady's IVIGs for his neurologist appointment.
-Eye contact (piercing at day 10/11) as if he came alive his eyes shine so bright
-Goes to sleep alone, stays asleep, sleep is not disrupted with no early wakings
-Emotionality/Anger/Depression
-Finger Movements and/or licking
-Smiles (spent hours looking in mirror at his smile after IVIG 3)
-Language appropriate, and at even deeper levels than baseline
-Cognitive: demonstrates knowledge at an age appropriate level and even beyond (able to show how smart we know he is)
-Memory
-Speech: increase range in pitch. His voice actually sounds like a different person talking by day 2

For rounds 1 & 2 these gains are all gone by day 20 and he starts declining rapidly. In these darkest of days you really begin to question your sanity. Was he really doing that well or is this really that bad? Yes and hell yes! When I, the queen of my son does not have the a-word land, begins to question if this is it? Is this the descent into autism that everyone said he had in the first place, what with all the new-fangled stereotyped behaviors including flapping that can mean nothing else to an outside observer, then yes he absolutely is doing this bad now and was doing so great before. The ultimate question is why now, what happened, and what the hell am I going to do about it?

After this third treatment, things went a little differently. He improved almost immediately, didn't seem to have as dramatic a change in eating, and the negative things we were trying to get rid of seemed to come back sooner, albeit in a milder form. So not as huge a benefit, but not as huge of a regression either. Then something interesting happened. This time, he had a longer period of regression, but bounced back around day 20. We have never had a rebounding before and it seems authentic, as close to the real Brady we know and lost back in the summer. I don't claim to know why this is or if he will stick around, but I hope he does. I so enjoy listening to his laughter and playing Just Dance with us and being his stubborn and hilarious self.

The way you ultimately know what you lost is when you get it back. Brady is supposed to be able to show us how smart he is when he wants to. He is supposed to be a cute, quirky, hilarious, happy, stubborn pain in the ass that makes you smile even as he makes you angry. He is my son and of course I love him no matter what. But it is a hell of a lot easier to live with him when he is not angry because he is depressed or sleep deprived but can't sleep or hungry but can't eat or smart but can't think. I want my son to be all of those things that make him special, including the ability to correctly (and OK inappropriately) use bad language to describe people and situations, because it is our faults that make us human. Yet it is our ability to overcome these shit holes that make us compassionate human beings. I want my kids to be compassionate yet powerful. I want them to be productive yet at peace. I want them to find happiness and love.

And yes, I suppose I will move mountains to make all of that possible for them to choose when they are ready. Someday they will understand why I have done all that I have, even if they never fully appreciate what it took to do so. I hope they don't ever have to know. I hope their existence is carefree and simple. For me, the complexity and challenges keep me moving forward I suppose. I have no idea what life would be like any other way. I am striving to have more fun while working just as hard and that is as more work than working hard!

Well little dude just came into bed to snuggle so no proofing of this post!

Ladies first

2012-01-07T06:38:00.003-07:00

It has been too long since I have posted to accurately catch everyone up on all that has been happening. The girls or Brady first? How about the girls, since in real life they rarely get to go first! Well, except on those weekend days Brady's therapist arrives so that we can spend some one on one time with them. This has been helpful, but sometimes it is not enough for them to feel like they are important and loved. Can any child really get enough attention? Often when you focus on the need for something the lack of it becomes so glaring that you have to turn away and act like it isn't really happening. Denial is a blunt weapon in my arsenal.

I am having a hard time remembering who said it on the Oprah show, but she was explaining how we think we are showing our children we love them by paying attention to the things we think will make them look or do better for the outside world such as: "wipe your face" or "are you wearing that?" But what kids hear is "you love me for what I do and not who I am." She asked the question "does your face light up when they enter the room?" I have remembered that and tried to change accordingly this year, albeit failing miserably, but being aware of something is half the battle, right?

Elsa and Abby had their annual exam at the end of December. I was asked "do they need it for their school or something? Why do you go?" Valid question. They don't need it for school, and I'm not sure how strict the peds practice is about being current on your annual, but I know it is one of the things they would ask if (when) I take them for a sick visit or throat swab. I need one less thing to be nagged about (shots anyone?) I can hear the Dr. now "I see you are overdue for your annual visit...and this list of vaccinations..." There is only so much smiling and nodding and "no-thank-youing" I am capable of.

I don't spend a lot of time arguing with my Dr. about vaccines, it is only when we have to see another provider in the practice that it seems to become somewhat confrontational. They treat me like I am a moron and I try not to stab their eyeballs out. It works. The Dr. and I do a waltz around the issue. Him: "I know you have not been getting some vaccines for a while. Here is what is due now, what is overdue, and what will be due next year. They are eligible for the HPV vaccine next year, but many people are electing to wait on that one."

I take a deep breath and for way less than a beat I see this idealized dream sequence whereby my persuasive argument gets him to open his fucking eyes and ears and see my kids and how little he has to offer them or answers about how they came to be who they are today. I see him understanding that since they don't know what causes autism, they can't tell me what doesn't and how I will never again listen to the people who brought me to my knees or my face smashed into my tear soaked pillow screaming. I see him hearing my rational argument that if the only thing that has ever helped him was learned from those who do say they know exactly what happened, who the fuck am I supposed to believe.

Wait, this post is supposed to be about the girls. And, ultimately it is, because I have gone this far down the road with my son because I know someday my kids will have their own kids. I never want them to have to live what is supposed to be a great, albeit exhausting, time of their life with this level of angst and anguish, falling asleep under the weight of a textbook every night kind of life. I wouldn't be moving forward with genetics and testing my son ad nauseaum if I hadn't come to realize that this is about more than him. Maybe that one Dr. will see him, enough kids like him, and figure out how to help those already here and prevent this from bulldozing another generation.

So, in this blink of an eye delusion. I snort a quick laugh to hide my seething rage and say "well, we won't ever be getting the HPV vaccine, but we will seriously consider the risks and benefits, as we do of each vaccine individually, of the meningitis vaccine as they get older and the risk of contracting this increases. He throws in "yes, and the DPT because tetanus is a real threat also." I can't help but think, OK so then why can't we get it separately without thimerosal right now then? Not that I would take it, but you do get my drift.

The rest of the exam was unremarkable until we got to the same question we have arrived at and answered the same way every single year. Abby has always tired more easily than her peers, she had constipation for years (does he not remember the crap solutions he gave us), and yes she has been losing her voice pretty regularly. He decides to test her thyroid and even agrees to add on a free T3. Her results come back normal, and it being the holidays when they called I forgot to ask them to mail or fax the values. But, then I didn't even make an appointment again to ask what we should look for next. Because I know what I should be looking for next. An appointment with the same kind of Dr. Brady sees to get her going on the next level of intervention. The diet has been great for her, but I need to do for her what I have done for Brady. I know what she needs, and ironically was poised to start this summer when all of this happened. I need to find the source of all energy to scale the many mountains on my horizon!

He also ordered a sleep test for Elsa. There was a mix up at the sleep lab so that Abby's file got sent over instead so it hasn't been scheduled yet but it is a step in the right direction. He started to go down the ADD route as being another potential cause of some of her symptoms: sleeping in the car, snoring, flopping around in her sleep like a fish out of water, forgetting her lunch 1-2 times a week, not being able to focus even on things that are really important to her, sudden worsening of symptoms, etc. I explained to him that I would like to evaluate her sleep as a cause or contributing factor and that I didn't see attention as her issue, she is able to focus on tasks that matter to her. She is just struggling to remember things and difficult to get out of bed in the morning. All this because she doesn't want to get her allergies tested!

It seems like we are all falling apart, right? I promise this is not the focus of every moment of our days, but these are the things that are standing in the way of my kids living their fullest lives right now. I know I can't be everything to everybody all of the time. I feel like helping them functioning at their highest level may contribute to them not needing me quite as much as they do and be happier with what they do get. I know, dare to dream.

I spent a lot of time (in my life that means more than one night in a month doing something that has nothing to do with my kids) socializing with new people or at parties over the holidays, doing my best to get out and have a life or at least pretend really well. I started thinking, always a dangerous proposition, about what kind of a life I would have as a stay at home mom if my life were just everyday chaos instead of a real life mystery diagnosis episode. I might have friendships where we exchange gifts at Christmas or get taken out to lunch for birthdays instead of swapping voicemails about new schools with great OT services or a once a year meal we eat out together when our kids are at home with someone other than their therapists. We would enroll our kids in ski school together instead of scheming to buy a hyperbaric chamber together to minimize the cost.

The truth is that yes, life would be a lot more fun, and I know I would be a different person if I didn't have the challenges I do raising my family. I imagine it would also be a lot less real and the friendships not as deep as those I have formed during this journey. I wouldn't want it any other way. It seems once a week someone is commenting on how angry or sad I must be that this happened to me. Once a week I find myself responding "why not me?" I personally know only a handful of other people who can and are doing what I do. I don't have time to be angry or sad, just proactive.

Sure, I wish I could be carefree and lighthearted for my kids' sake, but I don't love them any less than any other mother. Maybe it looks that way from the outside because I am serious and being tired makes me frown more than I would like. But, just the opposite is true. Would I like life to be easier for my kids and for me? Hell YEAH!

Peace and ease for 2012 (oh and a whole lot more fun)!

Tonsillectomies and Christmas songs

2011-12-12T10:37:00.003-07:00

I am contemplating taking Brady out of school for two months until he gets through an entire month after IVIG without getting sick and to get his tonsils out. That's right, the ENT we saw on Friday wants them (and his adenoids) out. We had to wait a really long time to get in to see her, prior to which we talked to the nurse and then you talk to a nurse practitioner before you even see the Dr.

Brady had fallen asleep in the waiting room standing up and leaning over a chair, his little head tucked between the armrest and the seat. Yeah, that's normal! He had woke up at sometime after 4 AM for the day, but didn't fall asleep in the car so I didn't think he would. He has woken up that early before and made it to his regular bedtime so I didn't really think much of it. I had to sit and watch a completely normal and intact blond haired blue eyed little boy toddle back and forth between his dad and the bookcase next to me. I don't look at the shimmering eyes of NT boys who look like my son and wish we had that life together, because I know we missed the boat on that one, but I do want to scoop them up and put them in a bubble for at least 4 years so that they can escape the challenges my son has had to face in his short life. I do yearn for those days of my son's own gleaming eyes, their blueness fiercely piercing through me and his toothless grin smiling up at me. That is what I fight for when I wake up every day and why I drag him to Dr. after Dr. to find out why for the love of pete did we lose those eyes and smile once again.

I tried waking Brady to get him to stand up and walk back to the exam room but he crumpled to the floor, his body folding in on itself like an intussusception. I lifted him over my shoulder like the fifty pound bag of flour that he is and carried him back. She let us skip the vitals as he slept through her questions and the nurse practitioner and her student as well. It wasn't until the beginning of the exam that he opened his eyes and let her check him out half awake. As she and the student left, I set him on the exam table and he rolled over on his stomach.

The Dr. came in and introduced herself, a really sweet looking and sounding gentle soul, if somewhat stuck in 80s fashion both in her dress and hairstyle. She asked me if I had any questions for her, because she had no questions for me. She didn't need any convincing that he need both his tonsils and adenoids out. She said this was a very common consult for her, and it was prudent to remove what is a known source of strep infection. I just smiled and told her I did not have any questions for her, that we had been through this surgery with one of my daughters already. We just needed to see if this was a logical next step and she agreed that it was. She crouched down in front of Brady's face and asked him if he liked a lot of words or a little. He of course said "a little." She explained that he would come back here someday and choice what flavor of gas he wanted and he would go to sleep. He would wake up and have a bandaid on his hands but that there would be no pokes. He said "don't stick the stick in my throat it makes me cough." She told him there would be no stick or poked from her, today or when he came back. She told him his throat was going to hurt but that he would get to eat lots of popsicles and ice cream. She also told him that even though it would hurt to swallow, that was the best thing to make his throat feel better.

And that was that. She left and the nurse went over the consent to treat and risks of the surgery, what to look out for after, and the information that was the hardest to deal with: not being able to take ibuprofen two weeks before or after the surgery. This would make it a challenge to schedule between his IVIGs (which also happened to be exactly the time frame we would be taking Brady to Florida to see a new Dr.) The alternative would be using the dreaded Tylenol...nnnnnnnnnnnnnoooooooooooooooooo!

I am waiting to hear back from the neurologist how long after the IVIG we should schedule the T & A. Since Brady still has pus on his tonsils, I guess I am both eager to get them out, and dreading my poor baby being in pain. I also want 30 days of him doing well after IVIG.

On a completely positive note, for the very first time in his life Brady is singing the Christmas carols from his upcoming holiday program! In the past he has barely been able to tell you the names of any of the songs, let alone words, and for sure would never, ever practice them at home. He is definitely making progress in areas that have been untouchable by any intervention thus far: food and singing. Now, if I could just get him to get dressed and go to school every morning.....

Another peds visit and having enough.

2011-12-09T05:42:00.003-07:00

The soothing voice of Pierce Brosnan rolled over me from the back seat like the waves in the movie Brady was watching. It was the only thing propelling me forward on the snowy streets and my bald tires through sloppy roads. I was on my way to Brady's pediatrician. Again. I had just ended Brady's annual review for his medicaid waiver. Of course it was an awful experience to talk about him doing even less than he had a year before when he was determined eligible. You see, it is supposed to be this great thing when your child's number is up and you have access to funds others dream of. And it is. But it was so much work to get his number I thought it would never happen and we lost so much time to that process. Then, as it turns out, the kind of help he would need while on it was very different than just the behavioral therapy others claimed would change his life but I wasn't at all sure about. As with everything, what you think is important isn't and what you never expected to, happens.

I was on the ragged edge before this meeting, Brady having had two really bad days in a row. As soon as his case worker left, I had the idea to look in his throat, just to see, if maybe there was a reason for his backsliding. I was shocked when I found puss on his tonsils. I made a sick visit and loaded him up in the car, having Abby pack snacks and drinks for the ride. Then Brady fell asleep on the way. I pulled into the parking spot and tried really hard not to lean my head on the steering wheel and just cry. I couldn't believe we were here again. I wanted nothing more than to be at home with all of my kids making hot chocolate and reading books in front of the fire. I steeled myself as I let Brady sleep a few minutes before lifting his limp body out of the car and into the five degree air. The frigid air shocked him awake instantly and he asked immediately "why are we here?" A question I didn't really have a great answer for. They had never done anything here except tell us everything it wasn't. I was sick of it and so was he. But for lots of reasons we remained their patients.

I took him inside and we checked in. All his vitals were normal as always. We saw the nurse practitioner who asked why we were here. I told her he had puss on his tonsils. She asked "And how exactly is it that you came to discover your son had puss on his tonsils?" I gave the briefest description I could about his behavior and speech regressing the last two days and how given his recent history this could be implicated in this occurring. I said he is receiving once a month IVIGs as treatment. He had been drinking a ton of water, and this was an indication to me that perhaps his throat was bothering him since he really doesn't communicate ongoing pain at all. She of course did a throat culture, and then requested a urine sample. I thought she was testing for a UTI since that was what he was most recently seen for.

After the tests were done and we were waiting around, she came back in and said the rapid was negative but they would grow the culture and call us if anything turned up. She took her print outs and sat down in the chair next to me like she was pretending to be friendly or concerned. She said that she had to test him for diabetes since he was showing signs of drinking a lot. It also turned out negative. Really? I'm the crazy one for looking in the back of my son't throat (but not taking his temperature constantly) and you think he could somehow have developed diabetes during the course of being examined by every department at Children's? She told me it was probably viral and that the fact that he was on prophylaxis made it unlikely that it was strep. Unlikely is my middle name beeootch!

I am shocked that I never say any of these things to any Dr. my son sees. Anyone who knows me will tell you I don't shrink from confrontation or miss a chance to yell. I suppose it is because I feel so defeated that I know no matter what yelling or even calmly explaining my position won't change a damn thing for my son, and that is all that I care about right now. But for her to question me or treat me like that, it really was the final straw. None of the specialists who have seen my son have ever doubted for one minute that something is catastrophically wrong and seem only to be concerned that they rule out all life threatening conditions before they treat the life limiting one that he obviously has. It has only been our own peds office, the ER docs or nurses, those who see the every day that see me an an unreliable reporter, a mom looking for some reason to explain away my son's delays. The problem with that is, why at the age of five would I all of a sudden be looking to them for an answer? They had never done anything for my son, and I never looked for them to. I took my son to specialists who did help him, and will continue to do so until he is recovered.

When the nurse practitioner asked me if I had any questions for her or wanted to discuss any of the tests I told her no I had the information that I needed. She seemed genuinely surprised that I wasn't seeking some kind of interaction or relationship with her. The last thing I wanted was for Brady and I to be in another Drs. office getting another test he didn't want. If she thought anything different she was off her damn rocker. I don't know why I even let it bother me what other people think, except that she treats me like I am crazy for getting the throat culture and then when Brady sees the specialists, they all act like why didn't I get his throat swabbed? He even has a standing order for a throat culture at Children's!

So, I've decided to drive all the way out there from now on and not deal with all of this nonsense. I want my son seen by a Dr. who at least has access to the professionals treating my son, if not a high likelihood they will be eager to learn about his condition and perchance be passionate enough about getting my son better to invest time in researching possible treatments. I have to say that I am really disappointed in the lack of interest his current pediatrician has demonstrated during this crisis. As my mom says "you want a Dr. who will cry when they close your file after you are dead." Brady has a lot of those Drs. on his team right now, just not the one who should have been there from the beginning.

I am not sure what, if anything, I will say at future appointments when someone doubts my intentions or observations. I think I will develop stock answers and questions such as "my child is under the care of this neurologist and developmental pediatrician who have consulted and prescribed treatment for a medical condition with the following risk factors and symptoms. These symptoms resolve upon treatment." If someone asks me how I came to notice a particular symptom I might ask, on the knowledgeable advice of my father "How does the manner in which I noticed a symptom pertain to the presence of that symptom?" In other words, WTF does it matter why I looked in my son's throat and saw puss on his tonsils, do you NOT see puss on his tonsils? I mean there is puss there right? So what f'in difference does it make? My question from deep down in my heart to the medical professionals everywhere who have failed my son is: WHY DIDN'T YOU NOTICE THE PUSS? WHY DON'T YOU HAVE ANYTHING TO SAY ABOUT HOW RED THE BACK OF HIS THROAT IS? HOW MANY TIMES BEFORE I STARTED PAYING ATTENTION ON AN AS NEEDED BASIS THAT HE HAD THE HUGE RED WELTS AND BUMPS?

Phew. I can feel my shoulders dropping already! I am a few cleansing breaths away from not wanting to bitch slap one of these people and myself for not standing in their face and standing up for myself and my son in the process. I am his voice and charged with protecting him. It is such a frustrating experience (can you tell?) to know your child is sick and not be able to find someone who can help him. If you throw someone in the mix who doesn't even think your child is sick, in the face of actual evidence, no wonder it takes so long to be in the face of someone actually believing you and then having to wait for the symptom to show up that one day of your appointment. There is a lot of faith and belief involved in all of this.

No one believes it?

It's not because of the science, it's because of the philosophy.

If you cannot agree on a set of criteria that you need to demonstrate something, how can you ever agree when you get it?

~Alcino Silva
as quoted in 101 Theory Drive, a great book on memory and the politics behind research. The most amazing thing I learned is how the Cam Kinase II (that is involved in PANDAS) also determines whether something is encoded in your memory or not. The connections just keep coming!

Second IVIG progress notes

2011-12-03T06:16:00.003-07:00

The differences between this IVIG and the first are that I am not expecting a miracle overnight cure or even long lasting results...just results. The lower dose and one day administration definitely resulted in less side effects. The headache, nausea and vomiting was not as bad, but still present. I did continuously treat with ibuprofen for 5 days and benadryl for 3. This obviously helped. If I tried to stop the ibuprofen he would stop improving and start backsliding. The improvements were more sudden across the board. For example, it took 10 days before we saw improvement in all areas, but this time my mom got to see the bump in speech, eye contact, and decreased emotional lability before she even left.

The way that he is able to articulate areas of deficit he experienced even prior to the regression is nothing short of amazing. On the night before Thanksgiving he was able to share how delicious he thought dinner would be the next day. At the dinner table, he sat in his chair, used a fork, talked about how good the food was, and was able to try sparkling cider for the first time. He said "it doesn't zing in my mouth anymore. I can eat lots of foods." He had the biggest smile on his face. He also shared, "I can feed myself. I don't need help anymore." We regularly had to verbally prompt and physically feed Brady bites of food to get him to either try new foods or simply eat enough of each meal prepared for him. In the past I have seen him turn green just at the sight of an objectionable food. On Thanksgiving, he asked for more gravy and even ate stuffing and mashed potatoes without a fight. Of course he wanted more cranberry sauce but we used that to make sure he ate enough turkey, which as it turned out wouldn't be a problem at all. After dinner I crashed hard, surrendering to sleep for a coma-like nap finding for just one moment in time I didn't have to spend worrying whether he would get better or not. It was just a matter of how long he would stay that way.

Of course with awareness comes a down side. Brady was playing in the basement and he started flapping his hands. Another first time behavior. Since he had his seizure he has come to look on the outside more and more like his diagnosis and this is absolutely terrifying. It does nothing but propel me to seek more help for him and shelter him from the outside world until we can get this figured out. My mom talked to him about how his friends don't do things with their hands so he shouldn't do it either. She was trying to teach self-monitoring, so that once the IVIG did start to work anything left behind behaviorally we could teach him to monitor himself and stop himself from doing. He said to her, "I'm not retarded." As horrible as this is to hear, and you could send yourself down a dark path in a nanosecond, this does show amazing self awareness. It serves as a reminder that he is listening and paying attention and completely understanding even when we think he is not or cannot show us at the time.

Day 10 seemed to be the magical number for the first IVIG. We have seen lots of good moments since his second IVIG, but day 11 was definitely the best by far. He was eating a box of raisins, leftovers from the snack we had taken to school. He asked me "are these poisonous?" I told him no, raisins are not poisonous. He said "C said they were poisonous so he wouldn't eat them. You should tell him they aren't poisonous." O K! He talked about something that happened in the past, in a different environment than he was in, about someone else that was there, to me! That is H U G E! Then he went on to have a 20 minute conversation with his therapist when she got here, she counted 113 eye contacts, the most he has ever had since starting this so-called behavioral therapy. The most he has ever had with the other therapist is 65 before the regression and he was much healthier then and "on." Amazing!

When he is healthy and doing well he can show us amazing progress. It is so easy to discount your own beliefs about how well he was doing before the regression, but all you have to do is hear in a friend's voice the fear over his loss of skills, or see the data or have that one awesome day to remember how great he was doing. He was having awesome days every day! Sure, he still had struggles but he was making upward progress and I literally felt like recovery would happen, it was just a matter of time and more rounds of chelation and supporting his other systems and we would get there. With this regression, I lost that hope and all of a sudden my kid became a tough nut biomed kid. Not where you want to be after all these years of struggle and success. You don't want to hear that catch in your friend's voice when she talks about him with worry and angst because she knows how serious it is for a child to lose progress this late in the game. It means we missed something major and it appears we are on the right track to discovering what inflammatory, autoimmune mediated neurological illness we are fighting against. Nonetheless, in January we are flying to Florida to take Brady to see one of the country's top "tough nut kid" docs. As I sit here watching the snow fly outside a trip to Florida in January doesn't sound like such a bad idea, especially since we missed the summer to doctor appointments and worry! A few carefree days on the beach sounds just like what the Dr. ordered.

Oh, and his heart study all came out normal. Aside from sticking a scope down his throat, this EKG and echo pretty much nails the full body scan approach to figuring out why our kid crashed. I know we will still make it to recovery, it is just going to be a different route than anticipated. Hell, Brady's whole life has been a different route. He has taught me so many things that I would have never learned if my hands weren't tied and I was forced to see it.

Last night I went to Brian's holiday party at work. This is the first year he has worked there that spouses were involved and I was a bit nervous about it. Would I find a dress that didn't make me feel like a frumpy housewife? Would I remember what it is like to have a conversation with adults that is not about raising children or developmental delays? As it turns out I did just fine, and probably shouldn't have worried about my dress as I was the only one wearing one amongst all the lawyers and accountants!

I happened to get into a conversation with a very nice man and he out of the blue shared with me that his granddaughter passed away from mitochondrial disease at the age of four. I have no idea the odds of someone being at the party who not only knew about MD, but had first hand experience and then would share it with me! I loved hearing about her spirit while she was alive and how many great gifts she brought out in so many people she touched including the doctors and professionals responsible for her care. I had to cut the conversation off before I started crying in the middle of the party but I was thankful that he shared his story with me and I felt good about being able to help him with the idea of publishing his DIL's blog as a book for a Christmas gift. She may not be able to read it now, but she will put it away and some day read it all in one sitting. It is so important that our stories and their lessons are not lost.

I am not sure why mitochondrial disease was put in front of my face once again. The genetics/metabolic clinic called earlier in the week wanting to know if I wanted Brady to be seen again. I wasn't sure at the time and took the name and phone number down and told them I would check with his neurologist and get back to him. She is still saying "we are treating him as if he has sydenham's chorea." So, while yes we are treating him and he is getting better, everything isn't exactly back where it was yet, and then there is the question of why this all happened in the first place and would it happen again? Until someone has, as Abby puts it, their mystery diagnosis moment, and THE doctor's name on her lapel shows up and a diagnosis scrolls across the screen capitalized and in blue letters, I suppose that we have to keep exploring all possibilities to ensure that we are doing all that we can. In the meantime, I love listening to Brady share how the world is to him and soak up every triumph through my pores no matter how transient. Above all hope upon hope that we find the answer for Brady, and that his answer in turn helps another child and another family. As much fun as I'd like to believe a trip to Florida will be in January, I wouldn't wish this route on my worst enemy.

I believe after a two day IVIG, you need two weeks to recover and after a one day you need less than a week really. So, if we were to go back to chelating right now we could be chelating about twice a month with one day IVIG. I could have done a round this weekend but I didn't as I still don't have Brady back on all the necessary supportive supplements since taking him off for the urine OAT test. I would have never thought he could be holding it together like he is without all the support he has needed for so many years. Now it is just a matter of determining what still makes a difference and what is superfluous. That is the most important lesson of life anyway.

Plain and simple

2011-11-30T05:25:00.003-07:00

"You holding it together in there honey?" Brian asked last night as the news spewed forth another story blaming a preventable disease on parents who choose not to vaccinate at all, or on a different schedule than recommended by those with financial ties to the success of the forced vaccination program.

I promise my blood pressure didn't rise as much as earlier in the day when Dr. Nancy "Bitch" Snyderman regurgitated her evil doctrine on the Today show website about parents who choose not to vaccinate being a health threat.

The truth is simple. The health of our children is being threatened, on that we can all agree. There are higher than ever numbers of unhealthy children and our infant mortality rate is deplorable. Why not start the story, any story, with this:

WHY ARE AMERICAN CHILDREN SO UNHEALTHY?

What has changed? I can guarantee you it is not parents choosing not to vaccinate or delay vaccinations. We spend almost all of our time ensuring our children are healthy through organic food, supplements, rest, water, and good old fashioned handwashing with non-antibacterial soap. How can that be more threatening than the parents who "let their kids eat green boogers and call that a vegetable?"

Instead of pointing fingers at parents who have done their research (more research than the pediatrician recommending these shots I can assure you) and assumed the risk for their child of these diseases, can we please get actual reporting on the issues for once?

You remember, once upon a time, there was an issue. In order to report on it you had to do research, have verified sources, double check your facts and show both sides of the story? This process is as much a faded memory as healthy kids without epi pens in their backpack in a hello kitty case or specialized instruction for a quarter of the kids in each public school classroom.

When the government start throwing reporters in jail for not revealing sources and police arrested parents for not treating cancer with chemotherapy, we lost all touch of reality and what America is all about.

America is about informed choice. Your choice cannot be informed if you lack unbiased information. Plain and simple.

Any parent who has taken the time to do their own research knows how hard it is to find unbiased information on vaccination and the health of our children. We have had to work long and hard to feel comfortable with our decision whether to vaccinate or not. We do assume the risks of disease by not vaccinating. It is with thought and intention. While I do not have the personal experience of watching my child die I know that it is an unbearable weight that shadows lives forever. In much the same way a disabled child can engulf a families' every waking moment. There is not an easy answer and any news story that portrays it as such has not addressed the nature of the quandary of protecting children's health.

I hope we can all agree that any child getting sick and nearly dying is terrible. But when this happens we don't run and blame other people any more than we blame ourselves. We don't take away other people's choices to make the best decision for their children and family. America was founded by people who fled such tyranny, travelled across treacherous oceans to have individual rights and to this day our citizens die to protect our freedoms. All of a sudden we think these fundamental rights are worth nothing and can be taken away.

I don't watch the Fox news report about a young baby getting whooping cough and tell that mother she doesn't have the right to go back to work as a Dr. because her child is not protected from diseases and thus cannot go to a daycare. I don't blame her for not washing the cart handle and bringing home whooping cough to her child. I don't ask if she herself got a whooping cough shot. These are all her personal decisions and rights to choose how she lives her life and raises her child. But I do want to survey her local pediatricians and ask how many kids with whooping cough that were old enough to get the shot ended up contracting whooping cough? I want to know if she has seen the daily lives of those who have been vaccine injured and walked a mile in their shoes in much the same way she is asking us to do for her? Her story has a happy ending with a typically developing girl which is a wondrous, miraculous event that the vaccine injured do not take for granted. If she is asking another family to take the risk of a vaccine to protect her daughter, will she be there to provide lifetime care for the same child should they suffer irreversible damage?

The argument always comes up that parents who choose not to vaccinate just haven't seen kids die from preventable diseases and are playing some kind of sick Russian Roulette with their kids and every kid in the community's health. Well. I think everyone else in society hasn't seen with their own eyes the horror of war. I think we haven't lived without the right to vote or with segregated bathrooms or denied the opportunity to receive an education. Just because I haven't lived that life doesn't mean I lack the ability to know right from wrong. It is wrong to take away anyone's rights because at the current time other people think it protects their own. Each person has an undeniable right to personal freedom and choice.

I may not have seen children die from measles, but I have seen death. There was certainly a time in my life when I would have told you we have to preserve the life of a child at all costs, that is until I personally had to live with what that cost was. I have also seen children stolen from families, their bright eyes melt away and their smile erased. Watching your child hooked up to machines is a terrible powerless feeling and you never want that to happen to your child. But there is absolutely no magic bullet that can save and protect your child from every disease. Making sure my children got most of their vaccines didn't lead them to the valley of health and perfect development. Don't you think all parents would be clamoring for vaccinations if they led to health and not more risk of harm than good? We know it is simply not the case. Study or no study. We have more shots than ever and sicker kids than ever. Please go prove me wrong because no one wants that to be true. To wake up one day and know that you were the reason your child isn't living the life he was supposed to because of something you did. Not someone else.

So tell me what is causing the health catastrophe of a nation of children rather than what isn't for a change. But don't tell me what I should do or threaten my rights to decide what is best for my family. Families that choose not to vaccinate a health threat? Nothing could be further from the truth. We are seekers of knowledge and promoters of health. This powerful, intelligent, and passionate group of parents are the only ones looking out for and seeking actual treatments for the children who have fallen prey to all that has gone wrong for our children.

My son would be nowhere today if not for those who have gone before me and provided the guidance and inspiration to keep looking for an answer of how to get my son back to that smiling, easygoing baby in pictures and on film that I can't look at without crying. Health threat? Wow. Promoting organic food and supplements and spending all your free time interacting with your child. Yep, that'll ruin your child for sure. Watch out for us. We could be coming to a town near you.

How about a threat to the pharmaceutical company's bottom line? You know, the one paying for air time on the same news program reporting the health threat story. That label I'll wear with pride.

Implore your news stations for even-handed reporting. Investigative journalism and not sensationalized news. Ask questions and do your own research. Listen to both sides of the story. Life is not without risks so they should at least be informed ones.

Live blogging from the infusion center

2011-11-21T14:22:00.002-07:00

Brady woke up at 2:45 AM for the day. He tossed and turned in our bed and screamed at his dad to be quiet so he could sleep and then around 5:45 finally gave up and let me know he had to go to the bathroom. Turned out I would have time to take his urine sample and freeze it for two hours before we even left for the hospital so I wouldn't need help getting his urine OAT out after all.

The girls are luckily out having fun at their two day sleepover adventure. Brady fell asleep on the way to the hospital and was drowsy and confused enough to not ask why we were at the main hospital or what was going to happen to him now. He just kept telling the nurse to "be nice" and "only one", which is a remnant of the time they only got half the orders at the lab, stuck him, found out they needed more blood, and had to stick him again.

He got the zofran this time, plus the benadryl and ibuprofen and so far so good. The night after the first day was the worst last time so I hope we do not have a repeat. If he still has problems then he will get zofran at home next time. I will do the ibuprofen and benadryl for a couple of days after the IVIG just in case. This kept the vomiting and headache under wraps once we learned the ropes. It is super nice to only have to be here one day, especially since this is our first time with a roommate and they are talking about getting their flu shot. As much as people love to indict those of us who do not get shots, I want to make them wear a tattoo on their face (a la squid soap) when they get flumist and are shedding the virus around my kids when we choose not to be exposed this way!

I am sure the Dr. will be interested to hear that Brady started the hand movements again. I thought it was just today but my mom said she saw them yesterday. We are for sure on the right track with this diagnosis and treatment. I hope that it sticks and is aided by the antibiotics this time!

I was able to get Brady in on Wednesday afternoon for his EKG and echocardiogram. Most people will be baking pies and we are going to be getting a picture of yet another of Brady's body parts. It will be nice to get it out of the way while my mom is here to help out.

Abby's section of the family newsletter will be of her playing the piano and swimming. Elsa's will show her swimming, girls on the run 5K race and Brady's will be copies of all his films and lab reports!

Tentative diagnosis but definite treatment

2011-11-20T08:19:00.004-07:00

The good ole' child development waiting room. I took Brady to see his developmental pediatrician and we wound our way around the serpentine halls and through doors to the waiting room out of sight. A large boy lay buried under his entire family's coats and had only his eyes showing. Another little boy spun and spun the marble race on the cube meant to entertain not cause perseveration in little boys.

I remember being here in December three years ago and wondered if there was hope under the surface of worry permeating this room. Would a diagnosis for the spinner relieve his parents or make them feel lost and hopeless and lose sight of the love they have for this cute little boy? I came on a different mission this day and did feel hope that this encounter would either give answers and treatments or give us permission to move on.

We were there for almost two hours with the Dr. going over the intricacies of all the improvements after the IVIG, the fading disappearance of the same gains, and the manifestation of new never-before-seen symptoms. Now appearing for a limited time "palm licking and spit sucking", get yours now before they go back into the vault! I had sent her two videos of these behaviors just in case he wasn't able to enact them out live on the big stage of the tiny examination room. No need to worry he pulled off a brilliant performance.

She seemed as intrigued with the improvements as she was puzzled by the new symptoms. I was also fascinated by the way in which he was able to describe previous behavior in what seemed like a rational perspective: getting his hair cut would kill him and eating pasta that was not what he had pictured from size, shape, color to meat type, well, made sense in his mind. Who could argue?

She did ultimately feel that he was experiencing a lot of anxiety but wanted to consult with the neurologist about the most appropriate steps. After another never-before-"scene" of her trying to ask him questions and him scripting about his Cars, and then looking right at her and saying "I want to talk to you about my Cars" in a scary, monotone voice that lacked Brady through and through, I told her this was not in fact Brady at all. I had never seen him do that before. Sure, he has narrow and obsessive interests, but his language has always either been lacking/absent but usually on topic and varied when present. When I later described this scene to one of Brady's providers they wondered if the anxiety of being at the appointment led to this way of conversing, but I had to remind her how MANY appointments Brady has had and this was probably the least anxiety producing of them all and he had never done this before.

After she consulted with Brady's neurologist, they determined that doing another IVIG was warranted given that his symptoms reappeared (and new ones appeared) at the four week mark when the IVIG would have worn off. We would be hearing from the neurologist. I had honestly gone to this appointment thinking we would trial antibiotics until we could get back in to see the neurologist and here we were going to do IVIG again.

The new DAN! claimed this was the hammer. Well, I think we can all agree that a psychiatric med that he wanted to use is a sledgehammer in my opinion, obliterating the foundation and throwing chunks of concrete everywhere so that the rubble makes it impossible to piece together the structural weakness altogether. At least the IVIG hammer attempts to rebuild, put supports in place, and not mask a thing.

After missing the neurologist's call and her catching me at the same moment I was supposed to taking Abby to piano the next evening, we talked about the IVIG being on Monday, just one day this time and at a maintenance dose (1/2 the other dose). If we did not see the same results, we would up the dose during the IVIG in December. She wants to do two months and then we will evaluate at our appointment in January what the next steps (if any) will be. We also decided to put him on a prophylactic dose of penicillin daily.

Basically the gist is that we are treating him as presumed sydenham's chorea, despite negative antibody testing and with this diagnosis comes the potential for heart problems. As such, since he is being treated for this, we have to follow through the heart testing which will include and EKG and echocardiogram. I am assuming all of this will come back normal and it is just another box to check like the MRI which rarely reveals anything. We will of course do all of our due diligence and our son will have had a head to toe evaluation whereby nothing could have been missed!

As far as the thyroid, I have not heard more about the blood tests we did from the new DAN!, and I would imagine he would not hand them out without and appointment. He wants us to do the urine OAT, start a new antifungal once we send that out, and then it takes 14-21 days for that test to come back. He wants us to schedule a new appointment after that comes back. So in his mind he wanted us to leave our son frozen, stagnating, and regressing for over a month!

The developmental pediatrician talked with endocrinology and they weren't concerned about Brady's thyroid values. She said more likely than my theory of high dopamine suppressing his TSH is that once an autoimmune process is in motion, many systems will be attacked and there may be a subclinical anti-thyroid attack occurring despite a measurement of antibodies in his labs. I felt deflated but glad I asked at the same time so that someone somewhere can explain what is happening! She also said the neurologist has seen this happen with several other kids she is treating and thinks she has an idea about it. I guess we will talk more with her about it in January.

Rewind back to my conversation with the neurologist...I know how some of you like it when I jump back and forth in time without benefit of visual information to give you clues that this is what is happening! She said that often she will send kids for the IVIG treatment and it won't do anything at all, giving her the indication that she can cross this off her list. Since Brady did have a reaction, both favorable and unfavorable, that is the supporting evidence that this is at least a factor for him and we should treat it as such.

I am not sure what it will take for someone to be able to definitively say "yes, this is for sure what your son has, this is his treatment, and prognosis." I am just thankful that someone is willing to see his symptoms and treat them even if all of the tests have nor given a lot of clues about how best to proceed.

We will be at Children's for only one day tomorrow. I will get the heart study scheduled, start penicillin and cross my fingers that he stabilizes and improves on the maintenance dose. I also hope that by giving him zofran, benadryl, and ibuprofen around the clock will eliminate the side effects of headache and vomiting. I will somehow figure out how to collect Brady's urine, freeze one of the vials for two hours, and get it sent out via fedex to arrive no more than 24 hours at the lab while doing all of this because I don't want him off his supplements for any longer than necessary so as not to confound the treatments and results that we are seeing! I have had so much extra time not making or giving supplements that I got to relax in the spa yesterday morning before my turbo kick class! Is this what normal feels like? I woke up feeling like I had given birth after my conversation with the neurologist and I was finally able to put down all the responsibility for diagnosing and treating Brady and put it in someone else's hands for the next two months.

Grandma was able to use her voucher from Southwest for taking the bump last time she was here to help me at the hospital for the IVIG to arrive for Thanksgiving week! She will again be at the hospital all day and help in the night if he gets sick again. It is a great comfort for me and all the kids to have someone fill the house with cooking smells and lots of running, playing, and laughing to keep our mind off how complicated this could all get.

She and grandpa already had their flight booked for December so we are all set up for assistance when we do the IVIG next month. This month I had a friend volunteer to take the girls overnight and for the two full days before I knew we would only be at the hospital for one day, but I am going to leave that plan as is since they are so looking forward to having someone focus only on them and normal nine-year-old fun. It is so important for them to have a normal life and I rely on so many people to help give this to them when I cannot. It has also been a great help to have one of Brady's providers come every other weekend so that we can take the girls out and spend time only with them having fun and not worrying at all. We even went to IKEA and got new things for everyone and I chose new star lamps that really put me in the mood to decorate for the holidays! We got Brady a new swing, the girls got new clip on lamps for their bed, Abby got a new desk chair and Brian got a new entertainment unit for his birthday tv (and he got to put it all together!)

Now I just need to finalize the plans for the girls' birthday coming up in 19 days! They have each chosen one friend to come over and go out to eat and have a sleepover with. I may come up with a surprise to go along with it if I find the energy....

Schizophrenia, Dopamine & TSH

2011-11-13T18:05:00.003-07:00

I have been shocked to learn how much research from schizophrenia can help our population of kids. I certainly didn't keep up with the research between leaving college and my psychology research career. What I have unearthed about schizophrenia in my fun pubmed late night date nights is a plethora of connections to autoimmunity, cytokines, neurotransmitters, thyroid hormones, and our ever-favorite permeable blood-brain-barrier.

Yep, holiday t-shirt will say I heart my B-B-B! Because when that gets penetrated (insert your favorite raunchy joke here!) That and we are thinking of putting Brady's MRI on our Christmas card this year since we haven't found time to fit in a family photo shoot between all the Dr. appointments!

In a nutshell, schizophrenics have elevated dopamine, yep, just like PANDAS kids. This is the movement issue, choreioform movements, etc. Dopamine is known to depress the level of thyroid stimulating hormone (TSH) which Brady has low levels of. No, I'm not saying that Brady has schizophrenia! Just that the underlying mechanisms might be the same and manifested in different ways when the body reaches it's body burden at a different age. The opposite theory has been postulated: low dopamine = high TSH in Graves disease, a wonderful autoimmune thyroid disease. Hyperthyroidism is correlated with anxiety and depression (still with me?)

TNF-alpha and IL-6 suppress TSH and increase ACTH. These cytokines are known to make the blood brain barrier more permeable. IL-2, another cytokine's release is dependent on the length of the infection, i.e. an undetected strep infection, or ongoing infection of measles in the gut after immunization vs. the naturally shorter progression of illness from an actual measles infection.

Prolonged infection = permeable blood brain barrier + onslaught of viruses or bacteria or metals into the brain = microglial activation (immune cells of brain/CNS) = autoimmunity

Here is where it gets fuzzy because what causes the elevation in dopamine. I need to do more research. I think IF the cytokines both cause a more permeable BBB and decrease TSH, that gets you to viruses/bacterias/metals in the brain plus hyperthyroidism which gets you to anxiety and depression. I just am having a hard time with the whole "self attacking self" theory of PANDAS whereby the basal ganglia is under attack and that leads to behaviors. We have more than THAT going on. There is another layer here. I feel like I will sadly have to be the one to figure it all out! Is it possible that by healing our kids that schizophrenia won't be far behind? That is a fascinating and exciting possibility.

It all reads like a science fiction Robin Cook but it is true theoretical realization of what happens when you try to manipulate an immune system. You can't think you can control when someone gets sick or whether they die without someone else getting sick and dying. That I know for sure!

I promise not to bore you with more science and theories until I know what I am talking about, not just talking out loud.

The ultimate question, is, NOW WHAT? We wait. Wait for Brady's latest round of blood tests to come in (including more thyroid values). Wait for all of his medical records. Wait for another appointment with his developmental pediatrician. Wait to start another antifungal. Wait to take another urine OAT test after being off supps for 48 hours (need more strength before I can manage that.

Thyroid problems are a medically treatable cause for hypotonia. Is this the piece of the puzzle we have been missing? I can't say for sure if it is a cause or contributing factor. But I know nothing we have done, including years of OT has come close to addressing his hypotonia. I have never heard of this causing as huge a regression as we are experiencing. Only three things have come up in all research: PANDAS, seizures, and mitochondrial disease/dysfunction. Time will tell what all the contributing factors, causes, and treatments are.

Racing for hope

2011-11-13T14:52:00.003-07:00

Every year since getting involved with my twins club I have at least aimed to run in what used to be called the Twin to Twin Transfusion Syndrome (TTTS) 5K Race. While my girls did not suffer from this disorder, as a mother of twins you become supportive of one another's worst nightmares.

All the same, my girls' umbilical cords were divergent in size, Elsa's pencil-like (as she turned out to be) and Abby's tree trunk sized (which she is not, but only appeared to be next to her sister!) and the Doctors were shocked upon their umbilical cord revealing that they were as close in weight as they turned out to be. While the size of my ass had purposefully grown immense to ensure adequate growth of my babies should they have arrived even earlier, my pride also swelled in the delivery room that I grew large and healthy babies who seem to be capable of overcoming any challenge. I had risen to the challenge of being burdened, I mean blessed, with child bearing hips. Six pounds and Five Pounds 13 ounces of baby is no small feat when they were still three weeks away from their delivery date.

While my confidence was shaky at best for the majority of their infancy through the preschool years, I felt strong enough to support others less fortunate than me. Mothers of babies lost ran in this race with their babies' name pinned with shaky hands to the back of their shirts. I can't imagine how it felt to be surrounded by double strollers everywhere while one or both of their babies never made it to their arms let alone the car seat and stroller they picked out. Other children, some singletons who lost their twin, or sets who survived were clearly impaired or impacted in some way from their fight to make it into this world. I know that parents with the names pinned on the backs and the living children running on their side often wonder if they would rather have their child live or live such a burdened life. Maybe they think they know the answer and I thought I did too.

This year I decided not to run in the race at the last minute. Elsa would once again be running in the renamed "Race for Hope" with her Girls on the Run group. I ran in the race last year, but certainly did not keep up with her. Each year I hope to be in as good of running shape as I was in college, and each year it seems I fall farther and farther behind. Ironically while this year might be the best in shape I have been in for a long time, I just couldn't bring myself to do it. I didn't know why for sure except that I have been giving myself permission not to follow my intuition when the occasion presented itself, even backing out of responsibilities that I would have completed even if at great peril to myself in the past.

If I really sat down and was honest with myself I would find that I didn't want to feel that last hill getting ready to swallow whole every ounce of initiative and confidence I had left. I become depleted and everyone is passing me by and I am utterly and completely disappointed in myself. Add to that my daughter is probably already finished by the time I get to that hill, and there is very little motivating me to run in this race.

As soon as I struggled to get there this year, with my son sleeping until I woke him at the very last minute and rushing to get to the finish line, running half a mile with a 43 pound five and a half year old in my arms, well, turns out I felt like a failure without even running in the race. I quit and still failed. I couldn't prevent feeling depleted or inadequate because I felt that way at every turn. I didn't need a hill, metaphorical or not, to feel that this race had beaten me, taken the best out of me, and finishing wasn't going to make me feel better. All of these families, celebrating a huge accomplishment together. My son hands were shaking and his brakes were on at every turn. He came short of telling me he hated me, just that he hated when I did this to him.

I hated it too. The things that once brought joy now brought tears to my eyes. And everyone wanted me to go and cheer or go and run and pretend that everything was normal. Everything in my life is the opposite of normal. I had some pretty dark thoughts leaving the park at my son's snail pace. I wondered what it would be like to just have a name to fight against, even if that was a deadly disease, because at least you could sink your teeth into something and look your enemy in the eye. My only enemy feels like time and every Doctor who looks at my son and says "I was expecting much worse" and agrees there is something going on but has no clue what it is or what to do about it. Where was our race for hope? Of course I felt awful for feeling this way, but honestly I just looked like any mother who lost a child crying on the way to their car. No one thought anything of it. They looked strangely at my son but probably just wondered if he had lost his twin. In a way it feels like we did lose a child but we are so lucky to have the chance to find him and bring him back for the second time and I am grateful for that. But the burden of having to be at the finish line with and for all of your kids, well, it beats the best of us down.

My confidence is shaken but not forgotten. I will try to keep fighting, knowing that I have to do what is right to get my son better. Even if I do not get vindication with a name for our enemy, I will find what makes my son better so that he can live his fullest life. We will find our own moments to celebrate together as a family, even if it is just the first day my son gets up on his own and dresses himself or Abby keeps her room clean without being told or Elsa decides not to go the extra mile for a project and relax instead. They are each unique and fabulous and exhausting in the best way possible. There will be celebrations and hope for sure, we just have to race harder and farther than most to find them.

A Doctor is not THE Dr.

2011-11-09T05:14:00.002-07:00

I woke up at 2:30 AM yesterday. You know how you are worried and excited the night before you leave on a trip? You go to bed late preparing for the next day's adventures, you wake up in the middle of the night terrified that you will sleep through your alarm and miss your flight, and then fall asleep right before the buzzer actually shocks you back to the land of living.

Well, I have surrendered this feeling generated from beach retreats for Dr. visits. The excitement is not the same. It is a worried anticipation. Will this finally be the Dr. who helps our son? Will this be the last time I have to relive my son's painful past and current regression? Will I get to stop talking about my boobs and son's shit for once? Yeah, it gets that raw in there for those of you who don't know. There is a constant tug of war between what they want to know and what you want to tell them. Very rarely are the two the same. And then, even though you are there for an hour and a half that always turns into two hours, you leave unsatisfied and frustrated.

You try to stay strong in your conviction and intentions, you even go so far as to not only open that file you have spent hours and hours preparing, you actually present the studies of tests and treatments you are looking at and leave them behind with the hopes that it won't get shuffled to the back of the file. You think: surely I won't have to sell this to this Dr. Then the Dr. asks you, with a straight face, "Why didn't you just take Brady to this Dr. at this institute to get this testing?" "That's a good question," you both say and think out loud.

What the fuck AM I doing in your office, taking my kid to see another professional who is supposed to help, supposed to have helped, kids like him? Who starts out your visit with a quick consult with a mental health professional who touts the benefits of psychiatric medication to stop your son's compulsions because "once that loop gets started it is hard to stop without them and if you let it go more than a month more you will be dealing with entrenched behavior." Thanks for the pep talk champ. When he led us down the hall and opened the door and there were two overstuffed microfiber couches I just about put my brakes on.

I was asked repeatedly what I wanted from the visit, and what my priorities were. Then he asked me what my obstacles were. Well, currently, douchebag, my only obstacle is finding a Dr. who actually wants to treat my son's acute illness and underlying reason for his current regression. No, my husband isn't uninvolved or unsupportive, he just has to go to work and pay for all the these ridiculously expensive office visits, lab work and meds/supplements. I wonder if he has any idea how many of these appointments I have had him sit in on, taken time off work for, arranged care for my other kids, only to have it be a waste of time. The truth is that while he is both supportive financially and emotionally, this falls into the realm of my responsibility. Ever hear of divide and conquer? That's been our policy since we had twins and hasn't stopped since.

Ever feel like your picture of how the world should work is so different than everyone else's that it's like you are not even living on the same planet? I pretty much walk around like that most of the time. I just don't want to pay someone hundreds of dollars an hour to feel that way. If I want to really feel that way and for free, I just click here.

I'm not saying everything was bad. It motivated the hell out of me to take my son to one of the top docs in the country because this local shit just ain't cutting it. I think I'll also email Obama about his healthcare plan just to let him know that the war on drugs is over and I can get medical marijuana WAY easier than an antibiotic for my sick son. But a psych med, that is the easiest to score of all! The Dr. was a very nice and personable, if not completely all over the place and disorganized, man. But experienced I would not say he was, and Yoda backs me up on that one.

So, where does that leave us testing and treatment wise? I guess he claims to have a hard time with other people's testing, but I told him he would just have to work it out. I think I'll put together a spreadsheet with all of Brady's lab values. I am sure it will be useful for his next Dr. too. As far as treatments, aside from knocking his other Dr. for going straight to IVIG (oh, I'm sorry and we left your office with what treatment in hand...oh right your coQ10 has soy in it so nothing), he is thinking:

-HBOT:uh, not sure about that one. Pending lottery check and magic 8-ball

-IJ penicillin and steroids: sounds good, why couldn't we get that done right away? Doesn't believe in prophylactic antibiotics.

-More IVIG if antibiotics or taking out tonsils doesn't work. See there's a formula on this chart, they told me so. No skipping to the front of the line.

-Viruses: does he have them and will we go after them? Everyone has viruses. Not thinking I am going down that road to stir them up until I get a really good idea about WTF is going on with his immune system and I think he can handle it. Ordered another HHV6 Titer. UGH!

-Allergies- retest those bad boys. It has been a really long time and kids do move from being allergic from one thing to another. OK. Especially since they now have allerbling

-Mitochondrial dysfunction: Doesn't think changing carnitine to the prescription formulation matters. Does think changing CoQ10 does. Obviously not going to do the testing that we think is the only way to find out for sure this is the reason for his regression.

-Immune function: won't say why this happened for sure. Has ordered more and more bloodwork. I don't know if I can do it. Only new test seems to be CMV IgG and IgM. I think I just don't have the records for immunoglobulins test so he ordered a new one. Yeehaw!

- Glutathione: Duh. We know it will either be low or normal. Doesn't matter. He is already getting the precursor (NAC) in his trio injection and he can't tolerate the cream. Moving on.

I don't know what I am going to do next. But this guy is for sure not THE Dr. He is A Doctor. One in the line of many. Does anyone ever wonder how many licks it takes to get the center of an ASD kid's recovery? Or, as Abby's favorite new show ends each episode: they can't help but wonder why it took so long and so many Doctors to find the answer.

Is it because there is no answer? Or not the answer they want to hear? Or just not one easy answer?

Trying again!

2011-11-07T14:48:00.003-07:00

I did survive the Halloween story party, and other than sending in halloween-themed treats not realizing one kid was a Jehovah's Witness, well I suppose I had many many moments to be red-faced, cry or be embarrassed but chose not to. Brady did go trick-or-treating despite his protests that he didn't want to. He side-stepped and screeched his way through the entire neighborhood.

Then I called the neurologist the next day because aside from those two wonderful new behaviors, he is now licking his palms and sucking his spit in between his teeth. A lot. A lot, a lot. She finally had her nurse call back and off we went to the main hospital for yet another blood draw. Would his strep titers finally be rising? Would any numbers show enough of a difference even if they remained in the normal range to change treatment? Would that be enough to get him on an antibiotic and stop all of this? Then the sleeping in his bed stopped and the only really good benefits left over from the IVIG are the language (down a little though), eye contact (same) and a decrease in emotional lability.

Now, I know very few kids get complete relief after one IVIG, but I guess I hoped that we would be on the lucky side of rare this time. Not so much. The challenging part of dealing with traditional medical professionals is their belief that one system generally acts up at a time, or a multi-systemic disorder links all of his symptoms, rather than two separate things going on at the same time. We can argue later whether these two disorders are caused by the same thing, but I would like them to at least entertain the idea that we don't need to choose one or the other, but maybe treat both?

Not that this is currently even on the table, but if another IVIG was offered to Brady at this point I would only agree to it if there were antibiotics, even if just one extended course and prophylactic abs on board before I would consider putting him through this again. We got him back, so we know he needed this treatment, but he wasn't able to maintain it. I know there isn't a magic eight ball prognosticating how many IVIGs or courses of antibiotics will help him sustain normal immune function. If there was, I'd put it on my Christmas list (and everyone else's).

But, this begs the eternal question: why the hell is all of this happening anyway? Way back in the day when we shunned the "a word" and worked really hard to recover our son and he was well on his way, I didn't push very hard. I worked with what the Dr. offered, found things I could do on my own, and melded the treatments together in a potpourri of hope. It was working and that is why I think I settled for slow and steady wins the race. Now, we are not even on the same racetrack, it feels like we are driving a different car, and the laps keep going with no flag in sight. Anyone else have to pee real bad?

I don't want to keep testing the same things in the same way over and over again and then throw in the towel saying we don't know what he has. We know he has: inflammation, metals, sensory processing problems, language deficits, extremely low muscle tone, digestive problems, regression, tics, auditory processing issues, motor planning and processing time delays, emotional regulation and low energy, sleep disturbances. This isn't one thing. Unless you want to say this one thing is the "a word" which allows you to refuse to look at treatments or causes.

To me, this equals two disorders, that I will say out loud tomorrow at his Dr. appointment and demand appropriate testing and/or treatment for:

PANDAS and Mitochondrial Disorder. I might go so far given our precarious current state of living: autism secondary to mitochondrial disorder.

I will tell you it is medical in nature and not behavioral or psychological in nature because since we started behavioral therapy, things have only gotten worse.

But what I refuse to do is play the Dr's games anymore. Wait for them to come up with an idea and throw it out if the tests don't show what they want to see even if the symptoms do. If it's not the "a-word" then what is it? I am going to have that answered by his sixth birthday because we have been going along with this song and dance for too long, and while I was complacent to be in the driver's seat while we were making progress I am ready for the real race: the race to find the answer, the treatment, and the recovery in whatever shape or form that arrives. I will continue to chelate during this process as that is a piece of the puzzle I do have control over, however I do not want to overlook that there are both chronic and acute issues that we are dealing with that I hope lead us to a provider who will move Brady forward.

I am not turning back or quitting, but I am also not standing by with my hands thrown up in the air saying "I don't know what else to do" like so many have done before. I do choose peace for him, myself, and my entire family and I know that I will get it once he gets what he needs to be healthy and show us all that he is capable of doing.

Halloween really is the scariest day of the year

2011-10-20T07:35:00.001-06:00

All of the kids got white binders this year. The girls for their "I'm fabulously responsible" fourth grade class to keep all the important papers lost together impenetrable from the eyes of mom who might actually need to know they have a huge vocabulary project due. Brady for his behavioral program. "Who's binder IS THIS?" I scream across every room in the house, out to the porch where their little heads are about to bob up and down and out the gate on their bigger is better bikes. It would not be great if they took Brady's binder to school, which reminds me that I should really get him a different colored binder!

These kinds of preventative measures to keep our home life separate and somewhat a secret have already failed, so why not cross that off my to do list? I could have never predicted that painting my hugely pregnant with twins belly like a pumpkin would have resulted in such a scary day almost ten years later.

Last week we had parent teacher conferences with Abby and Elsa's teacher. Of course she had lots of great things to say about both of them, having only known them for a short time she still nailed their personalities toward fun juxtaposed with overachieving tendencies. She said it was as though each one took a trait full on in the womb and having them in the class together brings them each towards the middle more. I laughed and told her it reminded me of their parents.

She said she had to warn me that the substitute texted her after reading Elsa's story that the sub had cried, and that as soon as she read it she cried too. The story was about her brother, and did I think I was going to come to the authors morning on Halloween to hear all of the kids read their stories in front of their parents? My heart sank and I tried not to let my mind run away with the one tear that somehow escaped despite my best efforts. The teacher went on to say that Elsa said her brother had autism, but that Abby shouted out to everyone that in fact "mom had never told us he had autism, but that there were books everywhere about it so the evidence was stacked up." They had researched it and decided they didn't have it, so it must be Brady!

The rest of the conference went off without a hitch, being that typically kids always behave better outside the home than in. Even on their worst day they are amazing kids and I was glad to have a night away to think about and focus only on them and what a great job they are doing raising themselves. Only, as always, that isn't how it turned out.

We always think we are doing an amazing job keeping all of our secrets and pain hidden, but children are always more perceptive than we allow ourselves to think. The part I was feeling the worst about was that I had not followed my gut instinct and had a conversation with the girls this summer about their brother. I let myself be swayed by Brian not thinking it was necessary. But before I go blaming him, I had the opportunity this month to raise the kids on my own for two weeks. Ever wonder in the heat of an argument if single moms have it easier making all the decisions? I can say for sure they do not. There is a level of responsibility coupled with physical exhaustion that I cannot imagine not having an end in sight for. But, there is also clarity to do the most important things because that is all that you have time for. These experiences bring all of us back to the middle. To not have to justify or lobby for every move you make is a benefit with too high a price tag.

I am both proud and saddened that Elsa and Abby were able to "figure" this out on their own. But by not being open and honest, their conclusion was sadly the same as the outside world I want so desperately to protect Brady, hell all my kids, from. From my official political platform, I took the bull by the horns and instead of talking about talking about it with the girls, I just started talking to them the next night as our family splashed in the hot tub, jets screaming and lights blinking. I told Elsa that I know she wanted to keep her story a secret but that her teacher had told me about it and that I was extremely uncomfortable with her sharing our private family business with the entire class and their families.

I realized the feelings I was having must be somewhat like being forced out of the closet as a young gay man, except that I had not been living two lives for that long and, really, it was only half a life that felt fake and forced. So, barely like it but similar and felt good, so maybe more like fake boobs? I can't say for sure.

But a lot was riding on this story:
-Elsa obviously was working through her emotions and felts strongly enough to write about it and share it in front of everyone. ---For a split second I worried too, would I cry and look ridiculous (of course) and would people feel sorry for me? I didn't want people looking at me thinking to themselves they had any idea what my life was like. "Oh that explains why she cusses so much"
-But, above all this was about Brady and I spent the rest of my talk with the girls telling them why.

I explained that the world is often a cruel and judgmental place. If we use labels such as autism it defines them, but it is not who they are. I explained to Abby that people are not "autistic" they "have autism". People are not "cancerous", they "have cancer." I was afraid if Elsa told in her story that her brother had autism, this would mean people would not expect the most from him and we know he does best when people expect the best. I didn't tell them, although I was thinking it, that her friends might judge her and what they have seen in the past as just a kid being weird, they might now label as autism and say or do something that none of us would like.

I kept trying to get them to ask questions, which they of course would not. Elsa started to tear up almost immediately, being the pre teen girl that she is. We spent a lot of time telling them that while some people have said that what Brady has is autism, many more have not. We were not sure what label to put on him, except "Brady." There were books everywhere not because we were trying to learn about a disease that he has, but how best to help him. A lot of what we do comes from all of the great things that have been learned about how to help kids with autism. The main idea I conveyed is that he could be helped but that we had to do a lot of figuring this out on our own because most Drs. don't believe that kids with autism can get better.

I tried to describe Brady in this way to them: he does learn differently and has challenges but is determined to work hard to overcome them, as determined as we are to help him. This takes a lot of time and effort, and that is hard because it takes away from them and all of us being together as a family in a carefree way. I imagined this made it hard being his sister sometimes. We all have to work harder and that makes us stronger and better people. Brady does learn things at a slower pace, but he does learn and will learn all that he needs to know to do great. Everything with Brady is at his own pace and this is frustrating sometimes, but he has also taught (and continues to teach) us a lot of great things. At which point Brian pointed out that even he is taking vitamins. We are all healthier and more present than we would be if Brady were not in our life. Everything about our struggles is not bad. The girls show amazing strength and courage and are so helpful with their brother. He is who he is because of their efforts to help him.

I didn't want to censor Elsa. Would it be easier to let her decide whether to read her story or not? Yes, but I would not stand for her substituting her judgment for mine when it came to using a label for her brother or anyone else for that matter. The truth still stands that people are harsh and cruel and I would protect all of my children from this as long as I could. Elsa is such a powerful and persuasive writer that I worried that she could sway her audience to believe her brother did have autism, where I have failed to sway many a Dr. that he does not. Maybe I should get her to write for my side to read at Brady's next appointment?

I talked to the girls about the most important thing. Not that they did anything wrong, but that they should have come to us with questions rather than trying to figure it out on their own. We are adults and we still don't have it all figured out and while nine year olds have a unique perspective, when it comes to our family, we should all decide together what to share with the world. I would start by sharing more with them so that they didn't feel like they had to figure it out on their own. That was the most important lesson of all.

Just in case I really wasn't paying attention, at the end of our talk a gargantuan stream of streaking heat shot across the sky for a full 8 seconds. I can't remember the last time I saw a shooting star, let alone one the size of Delaware. "What's Delaware?" Abby asked. Oh Abby, it's no fun there so you don't have to worry. Just pay attention to your gut and don't underestimate your ability to figure things out on your own or else a satellite might fall from the sky to get your attention.

Post-IVIG update

2011-10-14T08:08:00.002-06:00

I have done my best to keep a day by day note of the ups and downs of Brady's behavior and physical symptoms post-IVIG. I will share a few of the gems here if, and only if, you do not judge me or laugh so hard you shoot milk (non-dairy of course) out your nose.

They say it is to be expected that you have a sawtooth recovery, the ups and downs that have been happening all of Brady's life. One day he's back and the next he's "off." I have often said that I could live with it if I knew what kind of day I would have when I woke up each morning, that it was the unpredictability that I could no longer tolerate. But I have had to learn the hard way that this is simply not the case. I can't live with a day that I know will be filled with heartache as I watch my sick child not able to do the simplest of things. All I can do now is surrender, because if I ask for something, I might get it. I can't live with that genie in the bottle, three wishes phenomenon that you screw up and end up with a life you can't manage and a goat you have to feed. Besides our HOA has pretty strict rules about raising livestock in suburbia.

At this point in the process I have even more questions than answers. My friend asked "could this be what has been going on all along with Brady? He has never really fit into a traditional diagnosis?" and I really don't know the answer. I know it is a terrible, awful place to be in when you have said for years that this is not who your child is, this "a word" only to realize and have to finally admit that something major IS in fact going on and that you may just have to find out for sure what it is. You have been putting out rat poison without ever asking where are all the rats coming from and being frustrated that you can't ever get rid of them until you discover a huge source of food keeping them alive and breeding all this time. Is the strep that bag of grass seed allowing the rat population to breed unchecked this whole time or is it another layer of an immune system run amok because the house isn't clean enough, i.e. littered with heavy metals and viruses and yeast? Right now I'm the house cleaner on all fronts, but why does the house get this dirty so fast no matter how harsh a chemical I use to scrub out the stains or how much rat poison I distribute?

I have been reading a lot on the PANDAS boards because there isn't a lot of action on the sydenham chorea discussion lists, and there is a feisty thread about PANDAS kids being labelled as autistic. Well, imagine if the opposite were true? If your kid was labelled the "a word" and they too are affectionate and funny and loving and verbal but no one listened to you about your child's medical issues? Therein lies the problem with diagnostic labels, you stop looking, and if there is no treatment you accept and settle for a predictable day. We have come too far to quit. Plus I can't make this shit up. My son could be a comedy writer at this point. But, I may have to push for a Tourette's diagnosis if he is to remain in his religious preschool!

# of days after IVIG

Day 1: Anxiety up + new fears. "weird noises. I'm scared." Asked him if it was the heater or dishwasher as he was in the basement having a sleepover with his sisters. "no the weird noises are inside of me." For 2 3/4 days, Brady himself made NO outward verbalizations that sounded odd, the screeching and clicking stopped completely.

Day 2: Won't use the downstairs bathroom, showed fear. Went upstairs to use the bathroom, which he had never used unless he was taking a bath. Increased eye contact (70-75% of baseline)

Day 3: Asked "who are you talking to?" when I was on the phone. I told him Grandma and he asked to talked to her, then interrupted two additional times to talk to her (generally hates talking on the phone). He told the story about how the trailer came off dad's bike which happened well over a year ago. How I generally know if a treatment is working is that it brings out memories that he has never talked about before. He tends not to talk about stuff not happening to him right now, even before al of this. We played a game at the park with his sisters and a friend and ran all the way home.

Day 5: "I don't know what's going on" Not able to make choices, but at the same time laughing and making jokes. Fatigued still.

Day 6: Tried to go to the farm and he totally freaked out. I was thinking it would be calm and tranquil but it was filled with lots of school groups. I took him outside and he said he had to go back in so we went back in and out another door. He said "I saw the ducks. That's one thing and now I have to go home." Before we left he got in the car with the understanding that we would do one thing. I meant go one place, but in his mind he had agreed to see one thing. I still made him go to the donkeys and he had to be pulled and carried. I threatened and cajoled him but he just lost it. Could not hold it together. Said to me "I don't want people looking at me." I gave him ibuprofen when we got home and he calmed down a lot!

Day 7: Much better-memory coming through! Remembered medium is between big and small (something we had been working on and working on). Did I spy letters with me and only confused "j" with two letters, then sang the ABC song! Looks rested today. Gave ibuprofen in the AM. Still slamming doors after he leaves a room. Did after bath today. Got in wagon for a walk, but tried to jump out while it was still moving when we got to the park. Started walking home on own. Fear and terror on his face so I didn't push it and let him go home so no big screaming fit. "I don't know what to say" when you ask him questions or give choices, but at least he knows he is supposed to respond. Progress. Variety of play, easier to remove from screens.

Day 8: Brady brings me the thermometer, and low and behold he has a low grade fever. Look in his throat and his tonsils are HUGE and he has big red bumps all over the back of his throat. I freak out. Does he have strep? I start second guessing not pushing even harder for antibiotics. I page neurology and they are basically not any help. They treat it like any possible strep infection and can't help me determine if letting a potential infection go two more days will increase the likelihood that his body will attack itself again. I don't take him to the ER because I don't want to look like a lunatic. But I don't sleep that night because I am one of course.

Day 9: Low grade fever all day. Better after ibuprofen. Went to urgent care to get throat cultured. Rapid is negative, while waiting over an hour, Brady shows great language and play as ibuprofen kicks in. Nurse didn't even use a tongue depressor to look in his mouth (when you tell him to say ahh he lifts the back of his tongue so that it is VERY hard to see his throat) and she proclaims that "I wouldn't say his throat is "extremely" red. She didn't say squat about the bumps. At this point I am so tired and exhausted I can't even mount a defense. I only want the throat culture anyway. Then she says "has he ever cultured negative before because parents are always coming in here saying their kid always gets strep throat but then they never test negative so they are just carriers." I tried not to throttle her to tell her how incompetent and judgmental that statement is and calmly (not hard since I am almost comatose at this point) inform her that yes, he has cultured negative. I didn't even snarkly add that the only time he has tested positive was when he had a regression where he lost two years of skills and had a seizure and the chair of her department examined him and thought his throat looked "slightly red, but that she wasn't sure what his throat looked like normally" and took the time and energy and compassion to swab it and it turned positive and that is why I am freaking out at the slight possibility of him getting another strep infection and it going untreated, which it undoubtedly has since he doesn't tell us when he is uncomfortable or in pain unless it is from a fall and he is bleeding. I told her his other symptoms were extreme fatigue and she wrote that off as a potential result of the IVIG. I told the only way we know his throat hurts is not that he is telling us but that he is drinking more water than usual and going to the freezer and eating ice cream, not just picking the cookie dough balls out and devouring those. But, since I am only a parent and obviously this nurse believes that parents are not reliable reporters, we go home and wait for the culture to grow.

Day 10- Great day! First day no fever. Brady said "it's so quiet in here" while eating breakfast at the table monday morning. Alert, aware, present. First full day back at school. (tried one half day last week and had to pick him up after two hours due to fatigue and laying around plus there was a sick boy there and I instinctively felt like I shouldn't leave him there but I had a meeting I didn't want him to be there for). Slept in bed all night for the first time!!!!!!!!! Language 100%!!!!!!!!!!!!!!! Reasoning and justifications intact. Example: Teacher moved his friend K from next to him for "mothering". Brady said "Miss M lost her fucking mind (moving K). That's cheating. I said "Brady you can't say that word." Brady responds, "I'm not talking to you because I'm not looking at you. I'm not looking at you. If I were talking to you I'd be looking at you. I'm talking to myself." I try really hard not to laugh, but of course I did. "Brady, if you're talking to yourself, you can't say it out loud. You have to say it in your head." Without skipping a beat Brady deadpans "that makes no sense."

Day 11- Woke up at 4 AM and got into our bed. Language maintaining but emotional again. Not eating again. I noticed a few days ago that Brady no longer takes his shoes off all the time and they are on all the time. Very curious.

Day 12-Didn't eat dinner again. Not really snacking either. Obviously not getting enough calories which could be leading to night waking. Not wanting to go to school. Woke up at 2:30, stayed awake until 4 AM during which time he was eating. Brian kept him downstairs so that I could sleep.

Day 13- Quite irate that going to school was losing and staying home was winning as he says because K told him. Had to drag him to school even after sleeping in until 9:30. On the way to school he was being pretty mean and aggressive and when I told him if he didn't stop we were going to go to the real haircut place he told me "I'd die. If I get my haircut it kills me." I wonder if this has been going through his mind this whole time? Is he having fears because of irrational thoughts/rituals instead of sensory issues? I don't know at this point. When we got there he asked the director if they could "hang in the hallway", which is obviously what the aide was having him do way too much at school. Since he didn't want her there and she couldn't tell us the benefit of her being there we decided to stop sending someone to school with him and got a different provider altogether to work at home with him until his regular therapist returns from maternity leave. He was smiling when I picked him up.

But by the afternoon he was angry again, wanting to eat "pasta" but not wanting to eat the pasta I gave him. "I want fish chickens." I don't have those. "I want little chickens then." I don't have those either. "Why don't you have anything that I want to eat?" I don't know Brady, I guess because I am a terrible, awful person.

Day 14- Not sure how long he has been downstairs when I wake up at 7 AM. I am just thankful that he didn't come into my bed last night. After last night's parent teacher conference for the girls I am feeling really bad about how little attention I have paid them (I will post about that later!), especially after fighting with Abby to get a project completed that she obviously needed my help on for a long time but didn't feel like she could ask me because I had no time for her. So I got up and made the girls' lunch and french toast for breakfast and tried really hard not to cry like I did late into the night until I finally fell asleep on my wet pillow. They have had to grow up fast and be more responsible than they should have to in the midst of all of this. I am lucky because I have raised them to be independent their whole lives, but it is obvious I am not giving them enough. On the other hand by the time I was 9 I was raising my brother and doing the laundry for the entire house!

Then Brady is cranky and I take his temperature and realize he has another low grade fever. I give him ibuprofen and he is doing better. I didn't have to fight with him to quit playing Donkey Kong and go take a bath. There is a serious inflammatory process correlated with his behavior and I wonder how long it is going to go on? I wonder how long until he sleeps in his own bed? I wonder how long before my girls understand why I am working so hard to make their brother better and give me a break? I wonder if I will get to let my guard down ever again? I wonder when I will give myself a break? I wonder how long I can go on trying to be everything for everybody: wife, mother, therapist, alternative medicine provider, neurology fellow until I collapse a hollow shell of my former vibrant self? I can't remember the last time I felt like I could just go out and have fun and let the girls have the normal life they deserve. Or show everyone in my life how much I love and need them. It is all I can do to get out of bed most days and play a real life game of mystery diagnosis.

Someday it will be worth it and I hope that those around me whom I love will understand why I do what I do everyday. Until then, I just need to try harder and do even more. And cuss a whole lot less....

Four months

2011-09-30T12:17:00.001-06:00

I really don't want my blog to be like my life used to be...a 24 hour bitch fest. I have been making a conscious effort to not say anything at all if there is only negative sentiment behind it. I'm not turning all Pollyanna on you, just not wanting to spend all of my time complaining. So, that's the reason for the silence? Well, yes and no.

As soon as we got back from vacation it was a mad dash to get everyone ready for and back into the swing of school. This year, Brady has an aide going with him two hours a day for three of the days. This decision was not made lightly, but really an effort to push him to follow all the directions and every rule and take his ability to benefit from his education to the next level. Ultimately to allow him to be in a classroom like anyone else with no supports whatsoever.

It seems to piss him off, this always having someone tell him what to do. And yet he refuses to do it all on his own some of the time. He really still doesn't feel good and is not himself. As soon as we got back from vacation he developed tremendous anxiety over sleeping in his own room and either Brian or I had to sleep with him until he fell asleep and then, anywhere from midnight to 6 am (most often 3 am) he would leave his room, slam his door, open our door, slam it, and crawl into bed with me.

He is still emotionally labile but improving. Yet he is angry and sometimes mean, which we all know is not like Brady at all. I was cleaning out the linen closet and found this necklace Abby made her brother spelling: Brady***Loving***Kind. He is in there, and seemed to be taking his old self to school and bringing his new self home. Then this week he crumbled and couldn't hold out the facade anymore. I was on the way to the airport to pick up my mom (who had flown in spontaneously to visit Brady's school and sort out the aide issue) when I got two calls:

1) Your insurance has approved the IVIG and we can start tomorrow.

2) Brady has fallen apart, crying for an hour and we need you to come get him.

1) Yeah! And, wait how am I going to swing this? I cancelled the school visit and was thankful to have my mom with me.

2) I'm at least an hour away and my husband can't come get him. Thankfully he did have an aide who could sit with him outside the classroom until I could get there. Why do these things never happen when you are two minutes away?

So, yes, I have been quiet because I didn't have a lot of positive to say. Brady was slowly coming back, but some areas were stuck. I was getting the girls into all their after school activities and trying to see how I could fit myself into the empty slots of the day not spent cleaning, shopping, cooking or de-cluttering. And reading. Reading so many neurology textbooks I was losing my mind learning about all the different parts of the brain!

As I write this we are on the second day of Brady's IVIG treatment. Yesterday he handled everything as well as can be expected. He ate more in one day than he has in his entire life. I don't know if it was the Benadryl or what, but it was nothing short of miraculous. Then, on the way home he asked me "Mom, why did you have to take me to the main hospital?" Quite a profound question which I answered and he accepted.

Last night about 2:30 AM he woke up (yep, next to me in bed. I have given up even putting him in his own bed) and told me his forehead hurt and to get him some ice. Then the puking started. It kept up until we got to the hospital this morning and they gave him more benadryl. I am exhausted after getting up at 4 AM the day before, being at the hospital with him all day, up all night, and back here all day today. He has a bit of a temperature and the Dr. added steroids to help him out. She is going to come by this morning and check on him. They are checking him a lot more today just to make sure he is tolerating everything OK. They slowed his infusion rate as well. I am so glad my mom is here because I have no idea how I could manage everything on my own. Just getting him and all his toys and food and puke bucket would've been more than I could handle!

I was talking to a friend and I realized that I have been living through this for four months. I had no idea it had been that long. It felt that long, but I didn't actually think it was that many months! We are so fortunate to have this opportunity for Brady to get better and receive this treatment. Side effects are to be expected and show that something is happening in his body. I can't wait to see him have his best day every day and not be burdened with his own body battling itself.

There are only three kinds of autism miracles:

1) Having your number drawn for a medicaid waiver: check

2) Getting your insurance to pay for an extremely expensive but very effective treatment that is supposedly impossible to get covered: check

3) Functioning in your world unsupported, unaided, unfettered, without a label to weigh you down: Hat trick anyone?

The summer that almost wasn't

2011-08-18T22:46:00.002-06:00

Most people call it brave to drive a sixteen hour drive with three kids on your own, especially if it turns into 18 unexpectedly. I think it is brave to stay home doing the same thing in and out expecting a different outcome. Brady is exactly the same. I had to escape. That is the only word for it. I couldn't stay here and see him struggle with things he had overcome. I had to leave so that anything he had a challenge with I could blame on being tired, in a new place, etc. He did great actually, considering.

It was trying on him and all of us, as travel can be for any of us. "Where are we going? What are we doing now?" All legitimate and wonderful questions he had. Good language and questions. But NOT where he was. Is it too much to ask that we not swim upstream? That when we fight and win a battle that we not return to that battlefield again? I don't want to be the pitiful old men reliving civil war battles in the deep south. My thighs and polyester do not get along.

Brady played well with his sweet and tolerant cousin, who lives too far away to be of consistent benefit. Family shouldn't be considered of that which they can do for you, for sure, but family is supposed to be that which tolerates you no matter what. We miss that not being able to live nearby. And thus, all vacations near or far seem to be to visit family. Wouldn't it be nice to be near them? Even ever so often?

I know. It could be worse. It is just when your deepest darkest hours come, well, you don't want to be alone, do you? So, so often the deepest hours come.

Still no word from the insurance company nor Dr. about Brady's IVIG. Still no word from the county about his medicaid number either after six months either. I really don't want to be that woman on the news, especially since I don't even like to watch the new period, but I feel like that is the only way to get action any more. So many voicemails. Would a word in print make a difference?

So sad is the apathetic nature of government jobs that they can't feel or act anymore lacking pressure from elected office and media. It reminds me of the bullying issue I dealt with for my girls and given that they are set to start fourth grade with another year at another school that I am not proud to belong to, I feel like I have settled and sold out because I am too tired of dealing on too many fronts with people not doing what they are called to do, or at least what is right.

I wake up every day and do what I am called to do and what is right and I truly hope that the next school year we will find a home for all the kids to belong, whether together or apart. That the only thing I can hope for is that we survive this year. I have set aside thriving for the time being. I would just like to survive, and even maybe find a job to pay for that which insurance seems to be dragging it's feet deciding whether to cover. It seems either IVIG or homeopathy are the only choices left for us, and neither comes without costs.

The only question remains: can I suck it up in the real world dogma and make it happen once again? I am sure I can. I don't want to, for sure, but I will always do what is necessary in the world to give my kids the best chance at having the happiest life. The fact that others have settled for less than that is what worries me...

IVIG and a twofer Dr. visit

2011-08-02T18:30:00.006-06:00

The kind of let down that has been building for months is happening. You know the one where your throat starts to tickle and the tea gets put on to boil. You down your phytogen and extra vitamin D and hope that letting go of all that you have been holding in doesn't end up in a debilitating cold. Especially since you are set to drive your three kids sixteen hours on your own for the first time in less than two days. And you haven't packed A THING!

For your child's fate to be in the hands of the insurance company, with nowhere else to turn for help, there is only one thing to do: let it go. Yeah, totally Michael Moore-ish. Finally, there is an opportunity to give our first treatment a try in two months. Brady had his appointment with the neurologist who specializes in autoimmunity. She brought a second Dr. with her who came from genetics with a subspecialty in metabolic disorders. That was a first for me, two doctors. I appreciated the time saving benefit and they seemed to do a great job bouncing ideas off each other. So far there have only been tests and taking stuff out, and now a Dr. wants to take a chance and push for IVIG.

She definitely thinks it is an autoimmune modulated illness and this is the available treatment, regardless of which issue is at hand. Of course, she drew more blood (yes again) and I had to make an emergency bribery trip to the Lego outlet. We either get insurance approval or not, and with that kind of expensive intervention, I have been on the phone and email pushing for governmental influence on Brady's waiver status. We have been waiting for six months for relief (OK, three years and six months).

If we get another lucky break, Brady will get infusions for eight hours at the hospital for two days in a row. He gets to come home in between and eat and play while he is there. So we wait once again. All of the results from his spinal tap were normal. There have been a few abnormal values here and there, but nothing that points to a definitive diagnosis. However, given the rapid onset, personality changes, and odd finger posturing, this seems to fit the best, and my gut agrees with her. She even tested for some of the antibodies that I had suspected without me even bringing them up. Maybe I understand more than I give myself credit for! If there are no findings, she will push farther into the mitochondrial disorder arena.

Some tests will take another four weeks. We won't wait that long if we don't have to for insurance purposes. Poor Brady deserves a break and a chance to get better! He has lost years of development and his entire summer. I would like to not go to bed every night exhausted from researching during all my free moments and have just a few relaxing memories from this summer. I know my entire family deserves that. To hope that we could get him back, forever. That is the dream.

F Bombs, yeast beast, and more ?s than answers

2011-07-29T07:56:00.005-06:00

Brady had a DAN! Dr. appointment yesterday. Evidently we are not the only ones running out of ideas. She thinks: YEAST. Yep. I paid her hundreds of dollars to tell me that yeast could cause all of these things, along with Herpes which he tested negative for, which she also tells me means nothing. OK....so if all this testing means nothing, well, why the FUCK are we doing all this testing??? And why is it only her testing, that no one but her can interpret, means what she thinks it does?

So, all that we were doing to prevent and treat yeast had quit working. As had his enzymes. Also the probiotics to line his gut with good bacteria are not doing their job for some reason. And his immune system is shot. As Tony the Tiger says....GRRRRRRRREAAAAT! Oh, and we should really try the SCD diet. So....basically she told me everything that I have been doing (that she told me to do) has quit working and we have to try new and even harder things to heal my son's gut inflammation and treat yeast, and digest foods so that his vitamins (especially D) have a chance to work and keep him moving forward.

I point blank asked, "But why now, why all at once would this happen? When things stop working the effectiveness generally decreases over time. Wouldn't this regression indicate an acute infection? When do we look at PANDAS? When do we treat to find an answer and then develop a treatment plan that balances the increased yeast with killing the bacteria?" She did say yes, that you might think PANDAS but the problem with that is that you treat with antibiotics, then you just need more and more of them to be effective and then they kill off the good flora. So....we rule it out because you can't live with the treatment? Although I would love an answer as to why this has happened, it is more important to me that we figure out what to do about it.

This was not the most disturbing part. She said she sees regression in almost all of her kids, at least once a year, and it is typically seasonal and perhaps allergy related. I guess that explains WHY she didn't ever return the hospital's call and called me only once and never checked on Brady independently. So even with autism Drs, THIS is the new normal! This is frightening, terrifying and egregious. Mainstream medicine is taking my concerns more seriously than an alternative medicine Dr?????

If her why answer is always gut and yeast, then my question is WHY, despite everything we have done, does this continue to be an issue? How can we keep throwing things at the wall to see what sticks, and then just change these things out when they quit working? Why is this fucking cycle happening in the first place? Where is the reset button?

She gave no answer except that the body needs to stay in a delicate balance, and I left there with new probiotics, new digestive enzymes, a new diet to try, the Enhansa supplement that is just turmeric which is supposed to be an immune booster as well as yeast fighter. We are supposed to get a new throat culture (which was my idea and she said ONLY if the culture is positive would she prescribe a trial of zithromax) and in two weeks we should test his strep titers again, his vitamin D level (which we are going to increase), some viral titers and his IgA and IgG to sort out the immune function issue.

I feel defeated. I thought, wow, no matter what the hospital finds or doesn't, I can always take Brady to his DAN! Dr. and she would have an answer, or at least be willing to try some of the treatments I would like to in order to find an answer. Zithromax, LDN, something. Seems she wants to do more of the same and proceed as though this is the normal progression. I just flat out refuse to accept this.

I keep going back to Dr. Krigsman's lecture where he stated:

All regression is pathological.

At the end of each of Brady's Dr. appointments I hear the speech "we may never know what caused this, but hopefully you have lived through the worst of it and he will continue to improve on his own." I leave saying, I don't want to live with waiting for the other shoe to drop for the rest of his life. I want to at least know if this is a one-time bad experience, or if this is a lifelong curve ball that you can never be prepared for, but know is going to show up one day. Will we continue to see progress and then see it stolen from us? Are we rebuilding a house in tornado alley every few years? No one can tell me or has any idea. It seems they just want to see him get better on his own and that is good enough. Of course I want him better too. I am the only one doing anything to make that happen, not sitting around waiting for test results that no one will believe anyway.

It reminds me of every practitioner who starts working with Brady. All we hear is how adorable and smart and funny he is, and how they all think he is going to be one of the lucky ones to come the other side of this. That someday we will look back and question if what he even ever had was the A-word. Fast forward a couple of years and while he has shown tremendous progress, he is by no means symptom free. They run out of ideas, but more importantly they get complacent and accept him where he is and stop putting in the supreme effort to get him to the next level. As if it is his fault and they have given him everything they can. So you just have to constantly be shaking it up and bringing in new and different people to make it happen.

Here's the problem, as the captain of this ship, I don't have a replacement skipper. I might get relief now and again, but no one who tirelessly pushes people so hard, or spends as many hours as I do thinking about this or researching it. PANDAS seems likely for this acute regression, but long-term, if not the A-word, then what? Anti-NMDA receptor encephalitis? Rare x-linked disorder? Anyone, anyone? Bueller?

I want to steer this ship to a nice relaxing beach. I don't want to contemplate going to the college bookstore and buying pediatric red books of infectious disease and neurology texts. But what is left for me to do? I was complicit too, to move forward and hope all the things we were doing would lead to recovery for my son, but this regression threw me for such a loop I feel like I dropped the ball as well. I don't blame his providers for doing what they can to help him. I think I might blame myself if I don't get to the bottom of this, or take him to someone new who can help me figure it out. I mean if someone came up with the brilliant idea to turn your pajama pants into jeans so you can be lazy but out in public, well, why not figure this out?

We have only one appointment left on Tuesday morning. This is the neurologist who specializes in autoimmunity. I have a sinking feeling that she won't have the lab results to tell her it is OK to treat him. We have somehow ALL lost our way. We seem to always need independent confirmation before we can act anymore. Sometimes we have to act on faith that what we believe is true, without a lack of evidence to support it. Just a gut instinct that we are right, and that acting with some risk is better than the paralysis of inaction that leads to unknown consequences. I hope I'm wrong. I hope that there is still someone out there willing to take that leap of faith to help my son heal. I hate that I feel too broken or not "sciency" enough to do so on my own and have to turn to anyone for help in the first place. That I could leap and there is no one there to catch me or no net, well that could be terrifying. But I chose to see it as a freeing experience that can only exhilarate me more to keep going as a new piece of information brings me closer to peace and wholeness for my family.

Twins as just sisters born at the same time

2011-07-28T06:18:00.003-06:00

I realized yesterday that my blog is supposed to be about my whole family, nearly one half of which happens to be fraternal twin girls who are as different as the day is long. We are all under one roof again. Abby has been at grandma and grandpa's for over two weeks. She goes each summer on a solo adventure to spread her wings and see things like baby turtles and the bottom of a calamine lotion bottle. I am glad we have unlimited long distance because if she is not being entertained all minutes of the day she was calling home.

We noticed last summer how much one child (or the lack thereof) changed the family dynamic. You just get to spend more time with each child and their unique talents shine through. We were able to go on long bike rides last year, whereas if Abby were home she has less stamina for pedaling and more for complaining. Elsa stepped up and helped out more. Somehow it freed us to try new things. We noticed more how Elsa craves so many experiences that her brother's needs, dietary and otherwise, impact and prevent us from trying.

This year, a huge void was formed upon Abby's departure. I rely on Abby so much for her amazing work ethic and fantastic mothering instinct. She is always willing to pitch in and rarely tires of keeping her brother engaged. She says that "she doesn't think being a mother is hard." I certainly didn't teach her that! My fridge was also full of leftovers as she is my little eating machine. It became evident how much Abby does and how hard it is to get her sister to stay focused long enough to do anything that she doesn't want to do. Lots of days left me wondering if anything I have taught her has sunk in at all.

All I have to do is take them somewhere, or send them to someone's house and I get affirmation that despite of or because of everything we have done to raise them, everyone thinks they are great people and human beings. The little old ladies at grandma's tea party wanted to take Abby home she was so helpful. Elsa is the most well behaved around her swim team coaches and fellow swimmers.

I am proud of the way they are developing into individuals with stubborn minds that amaze me and frustrate me at the same time. This will serve them well in life. Many people don't even know they are twins. Keeping them in the same classroom hasn't meant they are too attached to each other or have the same friends or interests. Not having to worry that I am volunteering in their sister's class more than theirs or going on a field trip with her class not mine has freed them to feel secure that they are both getting the same from me: exactly what they need. They are diverse in their interests, friends, and passions. Even when they are in the same sport on the same team, the degree of determination and intention with which they approach each event means a unique experience and outcome for each of them. They still blame me if things don't turn out their way, or as always if I am giving more of my time and resources to their brother.

As always, kids act out the most at home and treat the people they love the worst.

So if you're having a day where the kids won't listen, are being the opposite of helpful, and seem to think you're personally responsible for the nation's debt ceiling: send one of them somewhere else and see what happens!

I'm having a bad, bad day

2011-07-21T17:09:00.002-06:00

When Brady was in the hospital for his overnight EEG and again for his spinal tap, we watched Despicable Me on a continual on-demand loop. I feel like I am living the "I'm having a bad, bad day" song. Mind you I just finished round number 41 so I have been up 3 straight nights. I didn't really notice a difference in him, good or bad. I did lower his dose, but even at the lower dose he was always more "on" during rounds than not. I can't say, "we chelated him and he got worse." That should be reassuring as one more thing to rule out, although it was never on my list of suspects.

The list is very long of everything it is not. No one can say what it is. And I get to live the life I imagine (albeit a less frightening one) of what the parents must have felt when their child disintegrated after immunization. You start to question, "was my child really functioning that well?" You almost convince yourself that it is not as bad as it seems and you should just be happy when they stop deteriorating and start gaining skills again.

"All kids develop differently. Maybe he was just sick and is getting better now," people remark trying to be helpful. Really? Because I can't find one story of a child who was laughing and playing and talking and then started making weird sounds and odd finger movements who is running a country so you'll excuse me if I am not easily placated.

But I guess after the Drs. stop calling daily, they've run as many tests as they think they can get the insurance to cover, and your son is still stuck without all the skills he once had, you start to tell yourself stories. Maybe things aren't as bad as they seemed, maybe he wasn't doing as well as I thought, and then you go somewhere or talk to someone and you remember the feeling in your belly as you told them how well your son was doing, knowing full well hers was not, and aching for her and being thankful for what you have. And you blink in that drive by hello and tears flow as you tell her in response to her question "How are you? I have been thinking about you a lot lately"...."I'm having a bad day."

That's what it all feels like in that moment, that this is a bad day, a bad dream, that you couldn't have possibly just spent almost all of your son's five years teaching him skills only to watch them slip through your fingers for a second time. You know it's as real as the heartbeat stuck in your chest as you swallow your tears and rush to the car without stopping to explain. You have no words. Just a knowing-ness of how "there" he was and now he is just gone. You worry for good, for probably the very first time since this all started.

You don't want to update goals in OT because now not only is there a lack of progress, he has lost ground and needs different goals almost certainly. You have been talking to the different therapists every week and I guess they just neglected to make any notes in his file whatsoever, which means they haven't been talking about him in the weekly staff meeting, haven't been thinking or worrying about him at all, maybe not even listening to you as you talked about private matters in the public waiting room. And a place that you once knew was home, felt like family, feels estranged and you floating on a raft in an unknown lake untethered. They tell, maybe you should try "x" therapy because, really, OT has become challenging for Brady since he refuses to take chances and move his therapy to the next level. Good to know that's the five-year-old's job!

That is as bad a day as I want. There are many, many things that have gone wrong on top of that, but for now that is enough. Remember what you forgot and believe what you know. As always, as a bitter reminder, the answer lies within us and rarely, with the kindness of strangers.

Starting over, but smarter this time

2011-07-12T22:04:00.003-06:00

As I sit here for what must be the 14th night straight listening to the rain and frightening thunder, I can't begin to think about staying up all night researching pubmed, although it is all that I want to do. I don't want to sleep or eat. I just want to find the answer, not this answer as to why my son regressed but THE answer as to why his brain works the way it does and how to help it work better. One would think that a neurologist would be highly suited to answer this question, but evidently not. Some words that I heard from a medical professional yesterday that I never thought I would hear:

"This doesn't sound at all like what you would expect to be happening as a result of an autism diagnosis"

No shit sherlock. Except it is the story that starts almost every single child that I know of with that diagnosis. I just can't seem to find any that have this happen in what I can only hope is the middle of our journey. Lots of 18 months and this happened, or even at puberty, just not at 5 years of age after so much progress. Is it the diagnosis? Hell yeah and a whole lot more. Are the Drs. supposedly treating these patients and the parents living the reality even remotely on the same planet? I often think not since they don't deem us to be reliable reporters of what has happened. But, if in the end they don't have a better explanation or plan of action, what is left for the parent to do?

And so Brady and I played Cars on the exam room floor for an hour before a completely different neurologist than we were scheduled to see strolled in (after I had opened the door and proclaimed rather loudly to Brady "I wonder if they have forgotten about us?") She did spend a significant time asking questions, checking on the myriad of lab results waiting to come in, trying to add to the discussion around what was happening here and why. She didn't really though. At the end of the day I hope my $50 copay and rainy, traffic laden four hour journey leads to her noticing in another child that something isn't quite right and more exploration is needed. I don't know if it helped my child. I know I have to do everything I can, no matter if it makes sense to me right now, to help him.

I ended her conversation with us, as soon as she let us know that we might look for answers and not find them, by letting her know that although I am aware an answer might not come about as a result of this anytime soon, answers would be forthcoming and I wanted her to look us up and give us a call if she knew at a later date what had happened here. I wasn't going to wait anymore, as evident by starting up Brady's B-12 shots once given the green light to do so. His speech is already better. His tantrums and processing time are slower in coming so it can't be the only answer as to what is happening here. I feel saddened that we have to still work so very hard to find answers but fortunate that we have the resources to do so. I will go on proclaiming that someone, anyone needs to help these kids! I will stay up a few nights, I am sure. Doing rounds as soon as I see fit and getting back to the work of recovering our son. Again.

LP's and wonderings

2011-07-08T07:14:00.004-06:00

And so the spinal tap produced no complications, procedural anyway. We yet again got to see the monumental change enveloping our son as he fought every procedure, every person sliding the glass door, every infringement upon his desire to be left alone and watching Despicable me, pausing only to ask if I had anything to eat. The nurse had to carry all of our things and I nearly threw him over my shoulders like a sack of potatoes to drag his screaming limp body back to the procedure room. Granted, the poor kid has been through an awful lot, even for an adult. All it took was one nurse in a hurry who didn't take the time to read his file, to get to know him and talk to him and tell him everything she was going to do before she did it. She swooped in, got the blood pressure cuff on by surprise and then while he felt like that was squeezing him to death, she tried to put the pulse-ox on his finger and he totally lost it. She kind of scurried out and ran away like a rat when you turn the lights on.

From that point forward I told everyone who came in they needed to first be very clear to him that they wouldn't be giving him any s-h-o-t-s or p-o-k-e-s and talk to us first to give him time to warm up and make sure to explain everything before they got close to him. They were like criminals confronted by police in South Watts, showing their hands and proclaiming "see nothing in my hands."

And then, in the end, they didn't have the orders for the muscle biopsy, just blood work to be performed while he was under for the spinal tap, or LP (lumbar puncture) as the medical professionals call it. They used gas for the entire procedure and he seemed to have the hardest time of all coming out of that. He was so confused and already awake when we went to recovery to be with him. He did eat an entire popsicle back in his room, while watching Despicable Me of course. He watched that on a loop while we stayed overnight in the hospital for his EEG. I connected to the theme song for sure, "I'm having a bad, bad day."

The next day (or two, or three) I felt exhausted. I could have been coming down with the stomach bug Abby had, but I think it was the immense relief of all the pressure, fear, and anxiety built up inside of me leading up to this procedure. I have been thinking about surviving these tests, not benefitting from them. Conventional medicine has not ever given me one answer that has changed my life, or my kids' life for the better. I hope this is the one instance that will prove me wrong and the bridge will finally link both sides of medicine that will almost certainly speed up the discovery of what we see happening to our son. The same thing happened when he was 18 months, but this time people believe us when we say he wasn't like this before. I don't know why they believe it. I'm just glad they do. I know it is possible if we uncover an answer here, that it may lead to the original assault on our son that to this day I don't know what it is, but it isn't the A-word.

I am not looking for vindication here at all. I am looking for the truth. I am looking for a way to help my son be healthy and keep him that way. I can't find anyone else who lost their child a second time, and, more importantly, got him back. I know I can't wait around the four weeks it will take to get most of the panels (including neurotransmitters) back on his CSF (cerebral spinal fluid). The only finding I know of so far was a low protein level. There aren't a lot of studies on low protein, as the main cause of concern is a high protein level found in infections such as meningitis. I did find a study where alzheimer's patients with low protein had twice the amount of brain shrinkage as those with normal protein levels in their CSF. Sure, the aging brain isn't the same as a growing one, but cause enough to stop googling. Except you know I can't. I found this page particularly fascinating as it relates to the BBB (blood brain barrier) being opened up by glutamate and cytokines since I have been thinking about adding anti-inflammatory agents brought on by allergies. I guess it freaks me out to think that the almightly BBB can be compromised by more than I was aware of, and I'm guessing more that Drs. think altogether.

I am frustrated that someone smarter than I am, with all the ability in the world to dissect the medical facts and studies hasn't figured this out yet. I don't even care if you figured it out for one kid, figure it out! I think the disconnect is those who see the big picture and abstract relatedness are not the same kind of people who voraciously devour research studies. They might get to see hundreds of patients, but then anything they learn is an isolated benefit to the patients they see. So much of the research related to autism, allergies, alzheimer's, chronic fatigue, multiple sclerosis, asthma, diabetes, adhd---they all have so many things in common. The brain and body are complex and we want to make sense of our world and have hard and fast rules and there just aren't any anymore. We need to let go of past medical paradigms and come together to at least save this lost generation of kids. I ask everyone I see, "have you seen a kid regress at this age?" The answer has been no. At 18 months, yes. At puberty, yes. But not in the thick of three and half years of biomed who has made as much progress as he has.

I will figure it out. In the meantime, we are lucky enough that he has stopped backsliding. He is inching forward, and although there are ups and downs in the days and weeks now, we are mucking through it. We aren't waiting that's for sure. Brady does have an appointment with neurology next week and an appointment with the auto immune specialist next month. In the meantime, we are starting back up his mB12/folinic acid/NAC shots. That is one change that we would like to rule out as a causative factor. His Dr. gave us the OK to start back up the folinic, but honestly I don't want to one off the interventions if they were combined previously. I want to put things back in place exactly as they were before and go from there. I will take hyperactivity and sleepless nights over this!

I am going to start rounds back up next week. Since he has not had any more seizures and he had a clean EEG, this is a safe proposition. I don't know where we will go from here. We were not at all happy with the way that our DAN! handled this crisis and don't know what we will do about that. It came to me this morning that I need to sit down and chart every concern and possible intervention, prioritize and get back to work. Of course, we will continue to work with the medical professionals but unless they have answers, we have to create actions on our own, or maybe even in concert with a new Dr., but always with each other and all of us together as a family to get it done.

Garden or dirt pile?

2011-06-25T06:05:00.005-06:00

My garden is a sad shadow of it's last year self. I can't even go back and look at the pictures of towering corn that was well past knee high by the fourth of July. I am not kidding that I just finished planting it yesterday. Half of it was planted while I was at the Autism One conference and I just couldn't figure out what rows were empty or where I wanted to plant certain vegetables or herbs. I was paralyzed by my fear of messing something up, or not having it turn out organized in a way that made sense to me. Really? As if when things grow wildly in nature they are categorized by herbs, lettuce varieties, and squash-ish nature. So instead there will be very few vegetables to harvest until the end of summer. It will probably take me that long to finish reading my Paleo Diet book so it's just as well.

My garden has always been a yardstick for how my life is progressing. Last year our garden flourished while others around us faltered. We also had a lot of help from my parents getting it ready and planting it and they certainly have more experience than we do at keeping things alive. Everyone seemed to be in a pretty good spot. Of course, I always want more and better from everyone and everything, but we were overall satisfied. We spent a lot of time weeding and being outside together as a family enjoying ourselves.

This year, it just seemed like one more thing to do. We have only once this summer enjoyed being outside in the garden. And even then the sprinklers turned on in the middle of our weedfest! The rest of the time it seems the kids are fighting with each other or us. Having pre-teen twin girls in this phase of my life is...not great. Wanna talk about scary? Brady is coming along a bit like the watermelon plants, green going in, but yellow and wilting coming out. We aren't sure if they are going to make it long enough to bear fruit. What kind of fertilizer can we use that is organic? Too much water or too little? Too much sun or not enough? Paralyzed by wanting to make it perfect rather than just making it.

I know that not every mother wants or expects as much, but I do know that every mom wants and expects their kids to be happy. When they are not, you feel driven to do something about it. Abby would rather be alone at grandma's, Elsa would rather be anywhere but around me, and I don't know what Brady needs. I know that Elsa will someday thank me for being so hard on her, and as she puts it, expecting more than I do of Abby and Brady, but getting to that tomorrow may be more than I can handle. How do you explain greatness to a nine-year-old with Olympic and Presidential aspirations? I exalted greatness as showing up every day and doing your absolute best, whether it counted or not. And always checking your work to make sure it is your best. I don't think great people are easy on themselves either. They do judge themselves harshly and expect better of themselves, no matter how hard they worked. I tried to explain this is why she is great at swimming, not just because she has loose joints that lend themselves to longer strokes and shoulder injuries.

I guess the key is also surrounding yourself with a few people who often tell you how great you are and maybe that is what Elsa needs right now. I can try to balance these sides of the coin, but really I can't stop expecting and exalting greatness because I know that is what she wants for her life. I want my kids to get what they want, but I also raise them realistically in a world that isn't fair and seems downright cruel at every turn. In that world some pre-teen girls need and alternately despise their mothers and blame them for everything. I don't think you'll find a mother's day card with that true sentiment, although I may submit one to Hallmark in my spare time.

Being a mom and wife is tough when it seems you are giving it your all and nothing is coming out right. Cee Lo Green puts it "you can only insist on your own happiness" since working hard doesn't change anyone else's. This is a new concept to me, but I'm giving it a try. Not giving in or backing down, but giving less to others not more when they are faltering. Apparently more of me is not what people want or need. I could use a little more of me for myself so I guess that suits me fine.

Doing less for Brady right now, waiting for his spinal tap which has been moved up to July 5th since he is not progressing fast enough, is statistically impossible for me. I wish they could put me in a medical coma until they do their tests. His neurology appointment also got moved to the 11th. I do not know if they will find something treatable or not. I'm not hoping or wishing for an answer or a cure. I just want him back. I am trying to hold out hope that someone will help me get him, but I'm also using this time for research and stockpiling an arsenal of backup weapons to carpet bomb him once they are done or if no answers magically appear. Doing nothing is the absolute hardest thing in the world for me to do.

OK. I'm not doing nothing. Brady had OT, behavioral therapy, and started up with speech therapy again this week. We will re-do the articulation test he just did to see where he is. His developmental pediatrician wants to re-do the entire test but since we have only 20 visits I am not sure about that. This is a new speech therapist (who is also pregnant like his BT) so I may phone his old speech therapist who last did his eval and see what she thinks.

Elsa also went to the orthopedist for her shoulder last week and started physical therapy this week. She woke me up at 5 AM this morning and I know she is just anxious for her big invitational swim meet today. She will go twice a week to PT until her shoulder gets better. Didn't you hear the summer of 2011 will forever be known as the "Summer of Specialist Co-Pays."

Wish us luck that our garden, and life, come the other side of this with stronger roots and heartier plants.

What are we going to do?

2011-06-25T05:36:00.003-06:00

When I walked past Brady's room last night, it felt like I was forgetting something. I wasn't lugging up my lunchbox of chilled chelator doses or studying the alarms on my phone or checking to see if his light was still on. I was just holding my breath hoping that tomorrow he would wake up and be himself again so that I could go back to our old hard life. Not this new hell where I am conversing with Drs. daily and making therapy decisions about at an almost new child.

Do you base your therapy on where he is, which seems cruel because I know he is capable of so much more; or do you treat him as he was and hope he can grasp that new level of skills? No matter what you decide, you are dealing with a very sick child who is pale enough to be translucent with dark circles under his eyes which seem hollow. He isn't here or there. I am seeing my child kidnapped in front of my eyes and would pay any ransom if only demands were made. But none have. Except you, once again, feel like you will have to figure it all out on your own. The bumbling cops are trying to catch the perp and you just want to rescue your child.

I know the Drs. are doing their best to make sure he doesn't have any life threatening diseases. The sad thing is that if both sides of medicine would only ever so often talk to one another, I wonder if they could come up with an answer. Everyone says how scary it must be to watch this happen. True. But what I really am is angry, infuriated in fact that we have so many great minds in medicine and science and they seem to be at odds with each other instead of saving our children. I have saved my child on my own before, and I know I can do it again. I just had hoped I would get help and answers this time. At least one other person wondering "what the hell is going on here?"

1 in 70 of our boys now have this A-word label. What kind of a society will come to be in the future? OK, you're a selfish American and have only girls with no developmental issues or allergies or asthma or ADHD or diabetes or obesity (that's less than half of you). You think it's hard to find a man now? Who the hell is your daughter going to date? I understand that unless it has happened to you, you really don't give a shit. I'll wait. Soon enough every house will have at least one of these issues to deal with. But, who will you turn to then? I promise you that you won't be able to turn control over to anyone and expect it to be solved.

I wake up every day with a pit in my stomach. I walk around with the weight of the world on my shoulders. People tell me I'm doing too much and am too hard on people and nothing is ever good enough. I think other people aren't doing enough. I think people have given up the fight and I have to carry on in their place or it won't get done. I know what a waste of a life it is when you are capable of so much more and aren't doing it. There are far too many fallen children who can't do, but they should be motivation for those of you who won't do.

Real live mainstream medical professionals

2011-06-20T21:17:00.003-06:00

The kids are all home for summer. We should be knee deep in playdates and pool visits with lots of park frolicking. That's right, I said frolicking. It is so much better than the F word I really want to throw out there and usually do, but there are kids around.

A few weeks ago Brady had a serious regression, akin to the one at 18 months where he lost all his words including mama which took six months to come back. He stopped using words and instead was making all these weird sounds and just being, well, weird. Things I have never seen him do, he started doing. Finger posturing and the weird noises were one thing, but then things we hadn't seen in over two years came back and I started getting worried, really worried.

Then he had a seizure when he fell off the monkey bars and worried doesn't begin to cover what I was feeling. I haven't even been able to write about it because I wasn't sure I could. I needed to see that he was going to be OK before I did because without any answers about what was going on, I didn't know what to say.

After an ER visit, an overnight EEG, an under-sedation MRI and gobs and gobs of blood work, Brady had strep throat. Nothing else was awry. The positive news is that traditional medicine did take notice about his regression and take it very seriously. They are actually looking for an answer. I am trying to be hopeful that there will be one that will explain this regression with a means to prevent another one from ever happening and recover him to his previous state. He is already on his way, but some parts have not come back and others come and go and still more things that came for the first time have stuck around like an unwanted houseguest.

We have since been to genetics and metabolic specialists, and have more appointments with neurologists and autoimmune specialists after he has a spinal tap next month. I am too tired from scheduling all these appointments and driving the 45 minutes each way to our Children's Hospital to explain all that they are looking for. I have been sick with worry and exhausted from dealing with this for three and a half years without the support of the medical community. I hope above hope that we can find an ally here for Brady's health.

Honestly healing Brady is the most important thing I have ever attempted and seems insurmountable at this point without new answers and avenues to explore. We have made great strides and to think about climbing that treacherous path again, I cannot fathom it. I know I will do what I have to do, but it seems just so damn unfair as my older kids would claim. The unevenness of the pass isn't just unsettling, it is downright infuriating. You feel great and you are in such a good spot and someone just comes along and knocks the wind out of you and you roll down the proverbial hill a la The Princess Bride, screaming all the way.

I refuse to roll all the way down this hill that I have scratched and clawed my way up. On my way down I'm going to grab a branch and hold on before I lose more ground than I absolutely have to. Brady is already showing how much stronger he is by gaining ground faster around this time. All the Drs. tell us that the number of supplements he is on mask their test results to tell them whether he truly has some of the diseases they are testing for, except they might not have better treatment so we can't stop and they aren't asking us to. Almost as if he usually is normally functioning so well that he couldn't have the disease just because they haven't ever seen how a supported kid presents. We just had to stop folinic acid before the spinal tap to test for cerebral folate deficiency. I don't know who will have the answers for Brady. I know we desperately have to get both sides of these medical professionals talking to each other and not battling each other to help these millions of kids. I have been told that Brady is not the first kids these Drs. have seen, nor his therapists, he is just a more interesting case than most I suppose.

Whatever, however, whenever it can happen that my son is the one to recover, to help others recover in the process, I am all for. We did do the Yasko test to help guide supplementation moving forward. Just more help. I am not going gung ho with a new approach and have actually not done anything new during testing. I am even holding off on rounds which is absolutely killing me. I am taking pause and waiting, waiting for him to reveal to us that he is ready to proceed cautiously as I always do. But I wait and wonder what the next phase will bring. He has taught me so much and obviously I have not learned all that he has to teach me.

Coming Out Party

2011-05-31T07:44:00.002-06:00

This past week has been like a huge coming out party, akin to the bar mitzvah held in the hotel ballroom where I was staying. I rolled down the stairs of the hotel shuttle, burst through the doors to the conference center screaming “We’re here we’re queer, get used to it.” Wait. Not THAT kind of coming out. But a coming out nonetheless. Just one without purple balloons and rainbow banners. This one had puzzle piece jewelry. Aside from my first and only biomedical support group meeting, I’ve never been out in public and said “Hi. My name is Penny and my son has autism.” Hello Penny.

It was like an autism community love and hopefest with our own version of rock stars. Wakefield, McCarthy, Age of Autism peeps, Judy Converse, Rupert Isaacson..every book I have read in the last three years, the author was there.

But what was even more remarkable was the quantity and quality of the research presented. And with simplicity and understanding. I have always wanted to know, and tried really hard to understand: mitochondrial dysfunction and oxidative stress and immune dysregulation. I can feel good about the fact that even experts don’t seem to understand the permeability of the blood brain barrier of our kids. Only a handful want to focus on the gut issues, but we all understand them. I don't need to see THOSE pictures.

I was there every day starting at 8 AM until the last presentation of the day ended. It was too much autism and not enough at the same time. I walked away knowing that there are really dedicated and caring individuals working tirelessly to uncover new treatments and epigenetic causes.

Under the guise of affordability, there was also a return to simplicity in our approaches. Massage oils as a means of absorbing the essential fatty acids our kids need. Exercise programs that get the whole family connected and up and moving together in a healthy and yet therapeutic way. How when you treat your children they way you want them to be, that is who they become. To question our thoughts as being absolutely true or just about you. To get right with yourself to right the world.

Sure, there were several new deficiencies and treatments identified. I realized when we stopped Brady’s B-12 shots, his folinic acid went with it and there is a folate antibody issue in some of these kids. I’ve got to get that back in. Also we stopped the 5-HTP. Guess their tryptomine levels can become elevated quite rapidly and this can look like yeast giggling. Dr. Rossignol was a rock star. I heard an amazing osteopath talk about adrenals about new promising treatments. There was a group of homeopaths that were quite spectacular in their energy and results.

I can’t be sure what I will do or try. I am motivated to keep going for my children’s children. If we don’t get this figured out their children are likely to be affected as well. I found several things for the girls. An antioxidant for Elsa’s attention. Likely homeopathy for Abby’s allergies, sore throats, and low energy.

I feel great that we are already doing so many of the treatments available and yet there are still more to try. I want to keep going, to simplify, re-energize, and above all heal and maintain health for the next generation. I don’t feel frazzled or see the need to try the newest thing until it is proven successful without side effects for our children. I silently thank those who are willing to do so. They are the pioneers and trailblazers. We will find answers, and above all hope. I hope also prevention. I hate it when I see the risk factors and I can check all the boxes: maternal allergies, infection, antibiotic use, prematurity, Hep B at birth. Four times more likely to develop autism. Lovely. I don’t have a time machine, nor do I want to put it all on myself or take things back or wish that things were different. They are what they are. I just wish upon wish that no one else had to suffer to learn this very hard lesson. I still shed a silent tear each time I hear someone is expecting a boy because I know they can't hear these risk factors, or don't think they have to do anything about it. I didn't and look where I ended up.

Today we remember the fallen. Those who have given their lives to fight for our freedoms and prosperity. I will remember all the children who came before us to teach us what we were too blind to see and too deaf to hear until it directly impacted us. I will remember the mother warriors who gave their whole lives to their children and who’s children may or may not have recovered, but without who’s efforts there would be no hope of my child doing so.

I remember the lives of all the children with disabilities that were stolen from them. I see in my mind’s eye them playing in the cul de sac with their friends, so many friends. Riding bikes, playing tag and being neurotypical. Whatever that means. I remember what normal was and how easy it came and still that was so hard when two kids are doing it at the same time. Nothing comes easy. As always, anything important is hard. I just don’t understand why my kids have to pay the price. I didn't think it was important to know why, just to heal them. But now I know how important prevention will be for my grandchildren.

I hope on Memorial day in a few years I can look back at this day as a memory. Where my heart and eyes welled with tears in the Chicago O’Hare airport thinking of the mom at the conference who had her son type an email to her that he loved her for the very first time while she was gone. Or a child avoided a feeding tube, or potty trained, or started talking again. So many tears, so much lost, and so little being done about it.

What are you going to do about all the sick children? There is something you can do. Please check out the newly launched Canary Party

The all-important biomed progress report.

2011-05-20T08:35:00.002-06:00

And true to my word to use this a journal to our biomed progress, we have done two new things this week. We raised Brady's ALA dose to 8.33 (this was after the performance) and added in 5-HTP. I got this last idea from Special Needs Kids Eat Right.

My non-scientist's understanding of how this works is that tryptophan is not getting where it needs to, thus the wakefulness (think opposite of the feeling you get after eating a Thanksgiving meal). We give 5-HTP near bedtime with a carb snack (that part is not hard). 5-HTP is two steps from melatonin (which we all know is important for falling and staying asleep), with seratonin in between (which regulates mood, appetite and aggression). We started at 25mg and are supposed to go up by 25 mg every three nights until desired sleep pattern emerges. Tonight I will go up to 50mg as the only thing that is happening is he is waking up early AND hungry! You can go up to 100mg and may only need a few weeks of treatment (how many times have I heard that?)

This plan is a patch for the program I read about by Dr. Goldberg. You know The Myth of Autism peaked my interest due to my disbelief that what our children have is The A-word. He had me until he started using anti-depressants on kids. I am excited to use antivirals once we reach one year of chelation, but I'm just not willing to give my kid antidepressants yet. If I can modulate his neurotransmitters naturally then I can circumvent pharmaceuticals with the same results. This is my forward moving goal. I am steadily backing off scrips in favor of naturals. There are so many amino acid supplements that need to be given one and a time and titrated up and down that I could be spending my time on. I got scared after a combo-formula really f'ed things up, but I am ready to get back on this all important horse and ride her to the barn.

We stopped Brady's B-12 shots. His wakefulness and crazy aggression is better. His speech is not. I might try TMG or DMG as an alternative. He is also on the waitlist for speech therapy and I might look for an in-home therapist instead. There is also a new speech therapist at Brady's gym to try. We have 20 visits with the new A-law but are still waiting for the word on Brady's medicaid. Everyday I wait for the mail truck like a high school senior pining for the thick envelope. It has been over three months since we were notified of Brady's spot opening on the waitlist and over two months since his eligibility date and no progress so far. The system is so broken I can't begin to get exasperated.

Brady is done with school and after memorial day he will start behavioral therapy three days a week for three hours. We will continue our newly started twice a week OT sessions and hopefully he will learn to swim and even get speech therapy. I am going to switch rounds to during the week so that we can have our family weekends back. We will be at swim meets all day Saturdays so it would just be too likely I would miss a dose. I would like some normalcy amidst all of this therapy and 6-days-a-week swim team commitment.

Normal. HA!

My Five-Year-Old

2011-05-20T06:51:00.004-06:00

I still trip on my words like a newly married bride when I talk about Brady's age. I can't believe he is five. When you first enter A-land and talk to other parents, that is an important goalpost. "You are so lucky you got a diagnosis at such a young age, now you can really capitalize on early intervention services." "We are going to push really hard so that he can be mainstreamed by Kindergarten." "Most of the brain pathways are set during preschool." A plethora of sayings churned by the biomed's rumor mill. As if we somehow had any control over how fast, or if, our children recover. I know in the beginning, I thought we'd be so much farther along than we are today based on how great a responder he has been to the oh-so-many interventions we have used. I know I am not alone in that feeling, but it doesn't take away from how thankful we are for how far we've come. We want the prize or we wouldn't be fighting and training so hard.

But we are still driving on the same bumpy path, not sure when the road will suddenly close and we will be diverted, either to a smooth interstate, or to an even more rutted road. There are no guarantees of sustained progress. This is one area where rules of logic and life lesson's apply. Past successes are not predictive of future failures. While other people's journeys might give you hope or perspective to be thankful for all that you have achieved thus far, that too doesn't give you even a hint of of your fate. You have to both surrender control, yet dig in and fight for what you want. I don't know if there is a grad school MBA class that teaches that, or even if an impractical parenting book that blames you for all your failings exists. Everything I have done and learned was from that campus no one wants to attend: the school of hard knocks. I am so stubborn it appears the only program that accelerates my learning curve.

Yesterday Brady graduated from Pre-K. I cried more than I knew I would. First, the director started talking about how each child had touched them in a special way and how privileged they felt for us to share our kids with them. This touched me because I know she meant it and I knew how important it was for me to find a place where we could feel like we belonged. Their answer has only ever been "No Problem. We love Brady and want to do whatever is right for him." Then she thanked me for running "the best silent auction the school has ever had." I was already teary and certainly didn't need to be singled out at that particular moment. It was really nice to be acknowledged though, especially right now.

Brady did something he has never done before. He ran to the classroom with no dilly dallying. The day before he hung up his coat and backpack without being prompted. He sang almost all the songs! In past performances, he has progressed from screaming on the stage and having to be held on someone's lap, to standing up there, to singing the songs! He even did the hand movements! Sure, the majority of the time they were a few beats behind. But he did them! And he was even in time with his movements a couple of times! And he had the happiest, biggest smile on his face. He was so proud. I was proud, and trying not to completely blubber.

Most parents were proud of their well-groomed children, for sure. But no one could have been prouder of their son. My son had on a button-up dress shirt (!), tucked into nice slacks (!), combed AND styled hair (!), walked in with his class (!), sang the songs (!), performed the hand movements (!), and EVEN WALKED UP TO SHAKE HIS TEACHER'S HAND WHEN SHE CALLED HIS NAME(!)

The whole time I was sitting in disbelief on the edge of my seat at what he was doing, but worried about whether he would go up when his name was called. Should I ease out of my row and perch in anticipation that he would need a hand to lead him up the aisle? Will he do it? Will he do it? He did. I think I held my breath from the time they called his name until he sat back down. When he arrived as the last student in his class at his teacher's feet she scooped him up and gave him the biggest squeeze and not just a handshake like the other kids with proud parents in the audience. That's the thing with kids you have to work harder to bring along, they leech more and more into your heart than other kids and you can't help but want them to succeed and are even more proud of each hard-won victory. We are so lucky that Brady has people like this in his life. We are as lucky for him to be in ours.

The end of an Oprah

2011-05-20T06:21:00.002-06:00

Damn you Oprah!

I have been glued to her final shows like a sage's deathbed advice. I know she's not dying, and is supposedly moving on to better things (for her maybe), but change is hard for anyone. She is one of the few mainstream personalities who calls for us to live our truth and be better people every day. Sure, I try to do that on my own, but even I need a swift kick in the pants every afternoon at 4 p.m. I mean, I'm off sugar here people!

She had her most valuable lessons show. Toni Morrison, who Elsa commented had hair like yarn, asked in an eleven year old clip "Do your eyes light up when your children walk in a room? Or do you look them up and down checking to make sure everything was right?" She said you think you wear your affection outward through your taking care, but in reality it is not what they see or feel. They see your criticism if everything is not done right, when they need to feel your love. Elsa said that was true. My heart cracked just a little more. She is fracturing me bit by bit.

I wish that she could have seen me with her and just her sister. I did nothing but spend all my time with them, laughing at them, doting on them, giving everything I had to them. We like to think if we do that, they might just need less as they get older and go out into the world on their own. It seems the opposite here. Also, by this point, I would have thought things would have been easier with their brother and I would be able to let up a bit on giving to him and be able to give more to them as well. So many casualties in this assault on our children.

The world is a cruel place and I am sure that the girls need me now more than ever. I guess I just got lost in how grown up they are and I'm not. I still have a lot to learn, and apparently in all the wrong ways. That's the great thing about pre-teens, they get you set up to be on high alert and see all your failings at every turn. Then, just as you have changed your whole life to be their everything and them yours, they will want you to drop them a block away from the mall and ask "are you going to wear that shirt?" pretty much no matter what shirt you have on. I knew that having teen girls the same age was going to be hard. I had no idea I could be made to feel such a failure before I even started!

Since Elsa has pointed out how little I do for her, I have been noticing that I do in fact spend a lot of time with her. It is just not in a way that she wants to. I have been making her come with me everywhere, the way that her brother and sister do, in order to spend the exact quantity of time. To the grocery store, to the library, to Costco, to the HFS....see all the fun your brother and sister have been having? I think she's realizing I might have been doing her a favor by not making her come since she hates driving around running errands.

The biggest battle I fight is being tired. I don't know what to do about that, except to be tired and try harder. I wonder how much harder I will have to try before I break? You know how they say you can be everything to everyone, just not at the same time? Well they are full of shit, FYI. Feminists pretty much ruined my ability to ever feel successful at anything lest it is working outside the home and bringing home a big fat paycheck while my kids hate me anyway. Recovering my son is more than a Fortune 500 career. I plan everything around it and it is the most important thing to me right now. I almost feel like saying to Elsa if I don't do this for your brother right now, he could be living with you after I die. If you think you hate playing with Thomas the Train now, imagine doing it in your 40's!

But I bite my tongue. I don't think a nine-year-old, let alone one who is going on 30, should have to be weighed down by that potential burden. I can hardly carry it. I just struggle with how to add more weight to my load. How do I give more to even more people? I know I have to. The imperfect temporary solution I have come up with is doing more of the work I had passed on to the girls so that I don't criticize them when they leave parts of the task unfinished. I want to teach them that important life skill, but it seems that now is not the time. They need me to teach them how important it is to feel loved and that this love is not conditional on being perfect or working the hardest for me. I guess I need to learn that lesson first before I can become the teacher.

My own mother tells me "that important things are always the hardest to do." Don't you love momisms? Moms may not get credit, but they must be doing the most important work in the world because I cannot imagine anything harder than being torn in so many directions, some of them which feel life-ending and being told it is still not good enough. I am usually not sensitive to these things, but this is getting to me. Something always pushed hard against me if I try to reclaim any part of my personal life back that I lost once I gave birth. I'm not going to let it win this time. If only it would stop raining here...we could just run away from our problems!

I hope Oprah goes on to invent a time machine with all her free time. I would like a do-over.

Heather McDonald is a Non-Funny Ass Hat

2011-05-13T14:03:00.002-06:00

Brian got me tickets to see Chelsea Handler for Mother’s Day. A great gift. Her show Chelsea Lately is the non-thinking woman’s Daily Show. It is my end of night routine where you just want to laugh at how stupid the world is, and not think about anything that would get you pissed off and riled up. Believe me, I spend plenty of time thinking about what matters and what is important and it pisses me off. Not exactly conducive to night-night.

I had been looking forward to the show and a night without kids after another long end-of-school-year day. Our favorite (OK only) babysitter just got back from college so Bri and I can resume a dating life again. I would like to win the lottery so that she could spend the whole summer with the kids we all love her that much.

We finally got out the door with the girls at a birthday party, Brady fed and working on using his left hand to click on the computer mouse, and we logged through the rain soaked roads to downtown. We had a delicious dinner at a decadent restaurant where I tried a Singapore Sling for the first time and picked up a tip from a long-time theater goer in the line for the loo. She puts her lipstick on while waiting in line rather than after she washes her hands. What a time saver! Especially for someone like me who doesn’t wear her lipstick very often and I don’t think ever re-applies it.

I tried really hard not to talk too much about the kids, but we never have uninterrupted time together and there is a lot of unsettledness in our lives right now. It was good for us each to air our side. Oftentimes you spend so much time on your own when you are married with three kids that you get used to making all the decisions and forget that sometimes another opinion is helpful. That doesn’t mean you have to use it. OK, you do, but you don’t have to like it.

We headed over to the theater and Brian started to get pretty worried with all the gaggles of girls in slut shoes we were passing that he was going to be the only guy there. But we soon merged with the couples crowd (and some of them were even straight) and I could see his shoulders drop. We weren’t exactly going to a Kathy Griffen show so I figured he would be fine. Guys will take their girlfriend to chick flicks or overpriced comedy shows if there is any chance of getting laid.

The theater was nice, new, and posh. Hell, you could even bring your cocktails to your seat. An intermission or waiter service would have been nice for refills as you got tired of tumbling over your row-mates to get out or have them falling over you, but that’s the price you pay I suppose.

We were front and center, but not too close that you could get picked on by the performer, just how I like it. The show started and I had a big smile on my face. There is nothing I love more in the world than to laugh. I was surprised at how hard I laughed at the opening comic, Brad Wollack. He is a funny looking man, but smarter than I thought. He is also willing to push the envelope on social commentary lauding the hilarity of drunken driving that turns out well to what happens to the cats of divorcing old queens. I was laughing pretty hard, but so was everyone else so it’s not like I look ridiculous or anything. His wife is pregnant and she is having a son. I want to be happy for her, but all I can be is afraid. He obviously has some serious tickage happening onstage and I worry that he might me another of the one in seventy boys.

His time was up and while I still couldn’t get the image of his fire crotch out of my mind(thanks for that) I was looking forward to the show just getting better as it went on.

Heather MacDonald was up next. A Catholic, lanky, skinny mom of three, she started out OK. To me nothing she said was extraordinarily funny. Typical mom humor. I know funnier moms at school pick up, me being one of them. Then she told a joke that stopped my blood cold and I tried really hard not to storm out. She almost ruined my night, but then I took the opportunity to walk out on her and use the ladies room. By the time I got back, hot, I mean funny, Josh Wolf was up and the crowd was rolling in the aisles again.

I don’t want to give her words power, but the gist of her joke is that she gets shit out in L.A. for still immunizing her kids and that her coke-snorting friends all can’t believe how she can do that or feed her kids gluten. Listen, I can laugh, hell, I want to laugh at how crazy and absurd it is that I don’t give my kids shots to protect them from deadly diseases or feed them gluten-laden items. I certainly don’t stand on a pedestal and tell people they are crazy for injecting unknown substances into their veins or feed them a steady diet of fast food. Don’t we all wish we could do that? It’s so easy for her to hide behind her religion and medical dogma that she didn’t even come up with on her own, and talk about her life choices as if she is the chosen one. Sure, I’m a little bitter she has her pre-baby body back, and somehow has escaped a life where her worries go way beyond whether one of her sons will be gay so they can take her out when she is old.

I can’t imagine what a slap in the face it must be to hear such ridiculous things from a shitty comedienne for those who know for a fact that shots are what stole their child. I have said many times before that I don’t have the luxury of knowing exactly what happened. I know shots played a part, as did switching my family to whole grain everything because I believed what a nutritionist told me more than what I knew to be true. I don’t know if it is better to have one singular experience to be mad about, or go through life with a diffused rage at just about everything. but, for someone to stand up and say their life is the right way to live just because they escaped having a child with the “A” word, well, that’s as fucking crazy as me telling you my child has the “A” word and you better do what I tell you or your child will too. It simply doesn’t work that way.

I was also angry that she seemed to think if she sent her kids to Catholic school and believed in God, that somehow she would be chosen to go to Heaven. I don’t proclaim to know much about God or religion. I do know that I don’t need either of those things to learn the lessons I need to in life, to practice patience and loving kindness and giving more of yourself to others than yourself. Basically getting handed the short end of the stick in life can do that to you, if you choose to embrace the challenges and make the best of it. Having a perfect life, a perfect figure, in my experience, is not going to get you there.

So, go ahead, Heather McDonald. You can have your religion, your bony ass, your shots, perfect kids, and imperfect diet for your children. You’re not going to ruin my night, or day after thinking too much about it. You will NEVER know how lucky you are you get to stand on your pedestal and be wrong about inhaling someone else’s dogma and eschewing it as your own. I have a brain. I like to use it. Just not while watching late night tv.

The best of the show was yet to come. Josh Wolf was actually the funniest. I can’t remember laughing so hard in a very long time. He saved the night as far as I was concerned. Poor Chelsea had an allergic reaction and was blown up like a puffer fish. That was actually nice as her skin is beyond perfection usually. She has an Oprah-like complexion in a skinny white girl’s body. It is sometimes great when seemingly perfect people reveal flaws that are much like your own. We all want to see the humanity in people, even celebrities.

Somehow I still left the night with a jaded, yet positive feeling. I am always amazed that even when I try to take a break from life, how much my experiences are reflected in my environment. I wonder if I will ever get to go out and not be scared to death for a pregnant mother expecting a son, or when I overhear a nurse calling a child’s name at the pediatrician’s office who is sick and there to get his shots and tells the parents it’s OK to get shots while sick. I wonder if my stomach will ever not lurch at the playground when my son is trying to so hard to play with peers and he gets lost in the game but doesn’t give up. Will I ever stop trying to rescue him? Everyone? Serve me up a Singapore Sling and let’s laugh at all the stupid stuff together without taking ourselves too seriously. Plus what night could be bad, when as my husband says "there were more hooker shoes than a stripper convention?" Not that he would know anything about that.....

Happy Mother's Day

2011-05-11T18:07:00.000-06:00

The reason this is late is that most of the post started as a facebook status and has been suspended there since our camping weekend on Sunday. Either facebook thinks my status should be as short as a tweet or the 3G was not up to par at our campsite! But since I have not had time to add this my musings on motherhood have taken a dark turn and well I'm kind of glad that my status didn't go through. It started like this:

Becoming a mother is like working on your thesis for five years only to have your computer crash, your paper copies burned in a house fire you were luckily not home for, but which you crash your car on the way to investigate. Your life's work no longer plausible, scars that make wearing a bikini impossible, you feel so lucky to be alive you find new meaning in everything. Life may not be what you thought, you become more human than you knew possible and you ultimately discover that meaning lies not within yourself. Happy Mother's Day to my fellow warrior moms who gave up, gave in, and got on with it! Our world is a better place with you and your children in it.

Except, as it turns out, your kids may not think the world is better with you in it. May, in fact, think it is all your fault that you have a special needs son who takes up all your time, another child who actually likes being with you so much will scrub toilets alongside of you to spend time with you. The other doesn't think you spend any time with her at all, in fact thinks you ignore her most of the time.

So to all the imperfect, overworked and unappreciated mothers, remember, they'll thank you when they have their own ungrateful kids one day. I know I am more thankful than ever for my mom and all the hard work she made do and all the things she taught me.

Common Patience

2011-05-06T08:05:00.003-06:00

Yesterday Brady turned five years old. The poor little guy has a cold and is not feeling well...(read) not taking frustration well. He has been off and sick since we returned from my grandmother's funeral. Too many nights sleeping in a new bed, going from place to place, eating meals at off times. All in all while we were there he handled it like a trooper. Although on the second night he was so tired and hungry and we were going to yet another house and he just welled up with tears and said "I don't know where I am." My heart broke and yet was filled with hope that he could have such insightful words for what he must have been feeling. My dad even commented how he was talking even more since he saw him a week ago. He played with his cousins and was fascinated by all the household pets and farm animals from parakeets to chickens nesting on eggs right outside the window.

My baby boy is five years old. I enjoy having his birthday on Cinco de Mayo. Everything from wanting another baby for so long to today has been special and not the least bit ordinary. I am not saying I wouldn't trade it for anything. I am not that pure of heart. I sometimes wish for things to be different, but then feel bad because then none of us would be who we are today. You can't have smores without a fire. I do feel gooey inside when I look at him, am away from him for too long. He wears a piece of my heart inside of him and every time he steps away from me, I feel relief and loss in the same breath. The mother son relationship is an intertwinement I can't tease out from our unique experience. He has changed who I am so much. I suppose, in the end, that is why I am so determined to change him too. Not because I don't accept and love him. But I want more for him. I know if I hold that belief for him, he will someday want more as well. If you really want to hear a much more poetic description of that relationship, go check out that book I picked up for fifty cents. It will change you forever.

I made a fun cookie cake filled with triple my frosting recipe. It looked like the world's largest and perfect Oreo. The kids at school were so excited when I came in to school for snack time. Brady got his birthday crown and was so proud of saying he was five. Our number one goal for Brady is to feel proud of himself and for a moment in time I felt my shoulders drop and breath a sigh of exuberance. I smiled at the children eating Brady's allergen free cake. Even the boy who literally eats two things ate the cake (although not the frosting, the horror!) It was a true celebration. Afterwards while the teacher and I chatted and cleaned up Brady didn't scurry over to the blocks or trains alone. He went to the kitchen and played with another little girl. He even asked me to put on his apron and the girl followed his example! From the inside out, these ordinary actions show enormous gains and had me grinning ear to ear.

His teacher read a book about caterpillars becoming butterflies as they had just released the caterpillars they hatched earlier that day. Wormy and Squirmy felt common amongst all the other beautiful creatures in nature. They asked God why did you make us so common? God replied I am not done with you yet. I have given you a heart like mine Be patient. Which of course, being two young boy worms they could not be. They watched how snails have cool shells and ladybugs had shimmering red shells and wanted more for themselves. They asked God again, why did you make us so common. His response was the same. I am not done with you yet. I have given you a heart like mine Be patient. Squirmy fell asleep and awoke a beautiful butterfly. He flew over to Wormy who screamed "Now I see."

I see too. I am not a religious person. But I have been humbled enough in my life to know that I also do not know what the plan is for my life or my son's. I believe there is more in store for him. Hearing that story, I can now picture this phase of our life together as the icky, not so glamourous, but sadly more common than you would think, worm phase of our life. I hope upon hope that we will get to see him transform into a butterfly. But if, like wormy, we are left behind and do not get the chance to soar through the air or perch on the new blossom of a flower, we will be happy for the butterfly and help others get their chance to fly. I hope I reach that place of peace as the mother in Blue Sky July and settle into my life as a mother of three kids, all of whom special, some just more needy than others.

Should I be offended or hopeful?

2011-05-02T06:11:00.003-06:00

Can you imagine if you, day in and day out, toil away at a backbreaking job that you pour your heart and soul into, only to be told that maybe you would be better at something else?

This is generally something that happens to me once, maybe twice a week, and it was only recently that I decided to look at it as possibly something I should be offended by. Because generally I am too busy to care about anything to do with myself aside from fitting into my jeans.

The conversation generally goes something like this..."wow I really enjoyed your recent blog post/facebook status/newsletter article. You should really be a writer!" I smile and say "thank you, it is something that I really enjoy and comes quite easily to me." I have a warm fuzzy feeling for about two minutes until it's time to scrub the next toilet/dose the next supplement/cook the next meal.

Then on Friday, forehead slap, I think to myself...OK, this is a nice thing for people to be saying. I love writing as much as I love my children. But no one ever says to me "you're a great mom. you should really think about having even more kids to take care of." Since I spend 99.99999999999% of my time either taking care of my kids, thinking about how to better take care of my kids, cleaning up after my kids, or cooking for my kids, one has to wonder if my ill conceived notion of how I spend my waking moments may not be the most appreciated nor most beneficial as far as societal contributions or fodder for my obituary.

So, why do I spend more time doing things that are challenging for me and that, from outward appearances, do not seem to be earning me accolades? Never does one of my children come up to me and say "you were made to be a mother." It is not as if I haven't tried to make some (any) money writing (obviously I do it for free so money isn't the prize). I have tried selling a book, articles, entered writing contests and have actually published research articles that hardly show any literary proficiency.

I wonder if it is the fear holding me back, that I could never get it right enough to be satisfied and would read my work and not feel it is ready to be released into the world. It can't be that because I never proofread by blog posts! I worry about being a sell out where my purest word is censored to more neatly fit into a numbered title and aligned with an advertiser's message. In a world where having an already established readership is far more important than the poetic nature of your prose, it wouldn't be my goal to have a shitty book on the bestseller list. I would far rather have my book be in the 50 cent clearance book at Big Lots and be brilliant. Yet, that would bring a tear to my eye as well.

It seems to be in my blood. This workaholic nature masking intrinsic talent and passion for the exact opposite thing we ladies in my family spend our days doing. My great grandma played dominos and cooked hot suppers with homemade butterscotch pudding dessert served in ornate glass parfait goblets reserved for that sole purpose. All while her fingers ached to tickle the ivories and fulfill her propensity to become a full blown concert pianist if only she had taken the time. She was also one hell of a writer herself as evidenced by the letters forward thinking family members squirreled away for future generations to treasure. Something tells me that her investment in her family led to more brave souls speaking at her funeral than being a pianist ever would.

My grandma worked her fingers to the bone, scrubbing her floor after each of her three small children ate a meal. She toiled in her garden, vines climbing, lemons falling under their juicy gluttony, strawberries playing peek-a-boo behind white blossoms and fuzzy emerald leaves. She loved her little dogs, one of whom was inexplicably named Penny, no one will claim whether I came first or the white poodle who bit. Above all my grandma loved people, their stories, their lives, and how they were intertwined with the very nature she could capture and nourish in almost every square inch of her backyard. The people who were the most important in her life were her family and I think she found her sweet spot most of her life. So much so that I can't say for sure what dreams she buried or gave up for her family. I have never met someone who worked harder, and as an offering she proved it by raking the leaves in her yard, still in her eighties, the day before she passed away two weeks ago.

Inner conflict and turmoil have crossed my blood brain barrier and I can't find a way to remove these parasites from my consciousness. On the one hand, it feels great to have a talent that is easy to squeeze into my full life. One that fulfills me and that others can appreciate as well. On the other, I risk losing it and myself as the work ethic and familial obligations that run through my veins compel me to work harder for my family than myself, which may be to all of our detriment. They are equal passions that deserve equal attention, but I have inherited an inability to balance or put myself first.

For now I will have to accept the compliments for my writing and take any pre-dawn waking moment as a gift to share my scattered perception of my existence. When people comment that they couldn't do all that I do for my children, I will reply simply that I have to, there is no choice in the matter. They still won't get it because they don't see the world as I do or have the strong willed women who came before me to live up to. I will hope that as my girls age into the next generation of workaholic women they can apply their efforts to the thing they are most passionate and good at, especially if that talent is raising their families.

Coming to terms

2011-04-24T07:45:00.003-06:00

I didn't intend for my blog to turn into a bitchfest. That is what my real life is for. I really wanted this to be a way to share what works for our son, talk about minute details of his progress and challenges, and somehow either make people feel better that their life didn't suck as much as mine (we all need that, right?) or learn about a new intervention to help their child.

There isn't a day that goes by that I am not reading or researching or thinking about how to implement a new supplement or technique. This isn't even an exaggeration. As far as my original intentions, this blog is clearly a failure. My efforts to help my child are not. My writing isn't as eloquent as I would like either. But, what really matters in the long term? That I took copious notes and laboriously recorded each setback and reached milestone? Yes, I even have two apps for that. Or that my son has learned to talk and proved that he feels empathy to the white coats and be a little hilarious guy, a source of constant angst and entertainment?

Think I'm jokin'? Here is a sampling of conversations with him last night: I was lecturing his sister that she was "bitching too much and needed to knock it off." Brady comes up behind me and says "I wasn't bitching." "You're right, Brady. You weren't. Thank you." I sputter out of the side of my mouth as I run from the room before I burst into side splitting laughter. We are riding in the car after a normal-family outing to the movies (the beginning of which I realize I have forgotten his dose and have to run home for a thirty minute detour to retrieve it. OK, so we aren't normal, but I can at least pretend for an afternoon). Abby, being in a weird post-sleepover mood, is being silly with Brady and asks him if she will need to spank his farty butt? Brady, very nonchalantly states "You will not. You will stay away from my farty ass."

H i l a r i o u s. Color me proud that my son know his profanity in AND out. I do. I rejoice in each and every word that comes out of his mouth. Especially now.

We just got his results from a recent speech evaluation with his prior therapist who hasn't seen him in a couple of years. Yep, that's how long we have been at this business. She was looking forward to seeing him. Now, let me be clear that it was her professional opinion at the time to discharge him from therapy. He had met his goals and had a pretty rigorous school schedule where he was receiving all his therapies at the time. Although, in my opinion he answered more questions than before, he showed a regression. His scores were down across the board, especially in articulation where his scores had fallen to the fifth percentile! If you saw and met my son, there isn't a thing about him that would lead you to believe this.

But, we have noticed a regression in his speech and intelligibility lately so there wasn't actually a lot of shock in this. That's the whole reason we brought him to her. I am used to getting bad results, but it is always curious to me HOW bad the results can be. I am fortunate that I have older children as I know how skills go forward and back as other skills are being worked on. You just hate to see it happen with a child who has worked so hard to gain every single skill he has. She did tell me "if this is in fact his diagnosis, his speech is doing very well."

He seemed to literally fall apart in the evaluation. If this were in the early days I would have spent days crying and lamenting on the phone about it. Instead, I took it in stride and as a valuable piece of information. After every single question he had to be redirected to pay attention. I have never seen this side of him, and must be what they experience with him at school. I was able to play a game with him and connect with him to bring him back, but what happens when I am not there? No one else has seemed to get him to do this for them all of the time. I imagine it is the stress hormones being released that push him over the edge and then he just can't come back. I wonder if this is why some kids do so well with an aide in school? The aide forms a connection that the child can trust and always can stop that cascade of stress and anxiety that comes as our environments propel infinite change at us.

At this point, it is all just information to motivate change. We have been struggling with his mB12/NAC/folinic acid shots as we finally tracked it enough to know that on the nights we were giving them, he would do his 3 AM wake up call. Yes, for the entire day, and yes, always on a school day! We talked about moving them to the mornings, and I think neither of us knows how to do this so we did nothing. We are still deluding ourselves that doing them while he is sleeping has somehow slipped his awareness as he will tell you "don't poke me" if you go in and he hasn't been asleep long enough. Now that his speech has regressed we will have to come up with something. But, again, so many other things are better that there is a constant trade off for lack of skills with quality of life. He is sleeping. His yeast is down. He is eating again. We are also doing these soaks that could be holding the yeast at bay so who knows. In this world, there are no clear cut answers. Trying to do one thing at a time is like using a butterfly net to catch flying personal items in the midst of a tornado. Just. Not. Going. To. Happen.

So, in the end, our son gets more numbers after his name in the speech department because of the receptive/expressive language deficit they look for in the "A" word that we didn't have before this evaluation. Damn how I love to prove people wrong so it will be great one day to buy an industrial shredder and shred each and every document with numbers and letters after my son's name. I have more hope now than ever that this will happen.

On the other hand, my slowly coming to terms (and I mean years behind slow), with the fact that my son will need more help than I can give him has led to an at home behavioral program. After his therapist observed him at school, she thought starting at home would be best and then generalizing to school at the beginning of next school year would rock the boat the least. I am all for not rocking the boat. I am tired of things getting worse before they get better. Except that is the law of nature and I haven't figured out how to cheat her yet. Because you can't and with every aged year, I come more to terms with the fact that I am in fact not all powerful. Sure I can make a lot of things happen, but I don't make all the rules, or even get to choose the game for that matter.

For now, his behaviorist will work with him two days a week until school gets out. And then I am not really sure what will happen. We will start speech therapy once a week and increase OT twice a week in the summer. Amp up our game as they say. As feeding is going well for the moment I don't think that I will do the eval right away. I will for sure before our funding runs out. But for now medicaid is still pending so it's not like it is that big of a deal to procrastinate on that one.

I am adding extra therapy to hold us over really. Chelation is going to be the game changer for sure. Just two days ago my son recovered his lost ability to alternate feet when walking up stairs. He lost this ability well over two years ago. He is turning five in less than two weeks and regaining skills of a two year old. He is even obsessed with looking in the mirror and brushed his teeth on his own for the first time and noticed that his hair was messy and requested a haircut. I don't get upset anymore about how late he starts a skill or how long it takes for it to come back. I just celebrate when he does. Even when it is mastering the art of profanity.

When you hear about "recovering from autism", well, this is what recovery looks like. It is getting back the skills that your child lost. Whether it is saying "mama" or walking up stairs or simply being happy for yourself. Recovery looks different for every child, but just like those parents know that shots stole their child, and I believe them, I know that chelation is going to recover everything my child was supposed to be able to do on his own but that instead we have had to painstakingly teach or re-teach.

My renewed hope for this blog is only that I am luck enough to witness recovery of all kinds of children, no matter what that definition of recovery looks like for that child. Some will not settle for less than testing NT (neurotypical), having no therapies or supports whatsoever, or needing any supplements or special diets at all. While that sounds like a wonderful life, not all of us will get there, no matter how hard we work. I don't want to say what I would settle for less than that yet, because I think I just will forever be holding out for that full recovery, but I can't say yet. Even though we are a few years in, and so many professionals have given us hope that we are just passing through this world and this label, every day brings a new challenge and a new hope for a skill that seemed like I couldn't even add to our wish list. I am forever humbled and reminded that our children can do more than we could hope for, and that just plain gives me hope for all of of us.

Biomed IS our vacation!

2011-03-28T06:26:00.003-06:00

It's Monday of Spring break. The new dog just shit on the carpet and it's snowing outside! Lots of posts on facebook about people on fabulous family vacations at Disney or skiing or the beach. Instead, we are looking forward to an OT intensive, meetings, and auction details. I feel really, really bad for myself. Oh, and my older kids. This time last year we were off in our new trailer to the Grand Canyon. This year we can't even make it out of the house for a walk. I am supposed to be getting ready for Brady's big fifth birthday celebration in Florida in May. Instead I am scrubbing carpets. Yeah, me! Not that it is any picnic for my husband who has to deal with my stress about the auction and Brady and the girls and the house, and work seven days a week. I know he would rather be readying for a family road trip as well.

I finally had the reevaluation meeting at Brady's OT gym. It was nice to see the progress on the standardized tests, as much as I resist that route. The good news is that on one test, the average of his scores put him in the normal range. How often do we get a normal test result? That felt great. The bad news is that his tone is still extremely low. I am going to be exploring some more intense interventions with his Dr. I don't think the carnitine at OTC levels is cutting it, or he needs more CoQ10 to absorb it. Something is still off there and I'm not sure what.

The other interesting development is that she really feels like the low tone in his face could be a major factor in his eating challenges. Did I say challenges? How about beat down, drag out battles? I am so tired and exhausted shopping and cooking and cleaning up from all these allergen free meals and snacks and then I have to sit at the table each meal (and now all of a sudden snacks) just to get him to take a bite on his own, or more often than not, feed it to him myself just to get enough food in fast enough before he loses interest. A friend of mine is having great success with the GAPS diet and I am looking into that. The gut healing is not coming along fast enough over here IMO. The yeast and bacteria battle continue on an hourly basis and that is not a good sign. We are going back to using the z-vibe and facial exercises and hope that this support will make it less hard to chew food, and thus more likely to eat. I will try ANYTHING!

Chelation, on the other hand, continues to be fantastic and this weekend was no exception. Brady told me about several dreams he had. Perhaps taking away his adrenal support off rounds is helping him to get more REM sleep. I know I only sleep enough to dream and remember it a couple times a year, if at all. He might be the same way.

You know how you try something, it doesn't work so you give up and abandon the entire category of supports? This happened to me with neurotransmitter support. Things often come back into our purvue and we give them another chance. I have been reading Special Needs Kids Go Pharm Free in an attempt to wean Brady off his prescription antifungals. I am definitely going to try amino support for Brady's lack of protein in his diet, as well as his presumed inability to extract the aminos from what protein he does eat.

But, again back to that full circle effect of the neurotransmitters. She gives some great ideas for utilizing precursors to the neurotransmitters that act in the same way SSRIs work. I was all jazzed reading The Myth of Autism and really looking forward to having 50 rounds of chelation under our belt so that we could try antiviral therapy. It sounds so promising. The protocol in this book intrigued me, until the point where he wanted to put children on SSRIs. I'm not judging those who do it, it scares the bejeezus out of me, though. Chelation used to scare me like it does everyone else also so I never say never. But, the prospect that I could use natural precursors to neurotransmitters in the same way he is using prescription SSRI's sounds like a good medium ground.

We still have the mega Vitamin A protocol that we haven't done either. This one is not just antiviral, but seems to be the trick for eye contact. I am looking forward to trying this as well. So, you see, there is always something new on the horizon. My friend talked me into going to the Autism One Conference this year just to hear about Yasko. Yet another protocol! When parents say to me: "we tried biomed and it didn't work for our child." I just look at them and say "I see." If I can't hold back and I start listing all the different options and asked them which they tried. There is no possible way any human being, even with unlimited financial, emotional, and time resources could try all of biomed in two years. It just isn't possible. I understand how overwhelming it can be. But, so can just leaving your child stuck where they are and not giving them every chance to break out and become who they came here to be. I will keep reading, and trying, and perservering until we find what works. I guess not everyone is able to do that. I don't know any other way.

We will eventually take that big fifth birthday celebration for Brady, albeit in the fall so that we can celebrate 5 for Brady and 10 for the girls all in one trip. The auction will be a distant memory, Brian's work will have hopefully settled down, and some new miraculous protocol will be in place so that we can go to Disneyworld and Seaworld without a disability pass. The good news is that with the snow falling, we will get more hilarious video of the dog getting a cone full of snow in his face.

The "A" Team

2011-03-28T05:48:00.005-06:00

I wrote recently about what it is like to straddle two worlds. You don't really fit in either one, and yet you do. Kinda Sorta. I grew up never really wanting to fit in with everyone else, and my oppositional defiance to all authority figures that still lingers (ok it is alive and breathing) has allowed me to not get all Heathers about it. Don't get me wrong, I would love to have a definitive answer about what my son has and be able to take that binder home, read it, and start the program tomorrow. But, there isn't an infommercial solution available to anyone.

Today I dip more of my toe in the "A" pool. This is as close as I have ever come. I wouldn't even drive by this pool before and yet here I am, fully clothed yet heat stricken and longing for a cool down dip. Instead, I am leery of lake monsters from the deep eating me if I dove in Billie Jean style and didn't make it to the floating raft in the middle of the lake. No matter how parched I become, I still can't dive head first. Too many eighties horror movies I guess. The "once you go in you can't go back" phenomenon. While there are wonderful people there, I don't want to summer here for the rest of my life. I want to remember it as that really bad vacation we took one time that we learned a lot from.

I interviewed two behavioral providers last week. One woman, very sweet, just got out of school and is a board certified musical therapist. She pretty much has zero experience in this position, and while I am sure someday she will do fine, we can't really be bringing in rookies at this stage of the game. We saw where that got us in EI! I did instantly however like the breadth of experience the team lead would bring. She was far more interested in building rapport with Brady and stretching him out even in his very first visit than spending too much time at the table with me in typical interview style. Just watching her, you could see exactly what those clowns in EI were doing with just enough information to be dangerous and really piss Brady off. Brady took to her right away. She was very willing and eager to train the staff at his school as to put supports in place to make him feel successful and how to remove them. Most importantly help him enjoy school again. I wish we could have her as his only provider, but the funding through the waiver only provides some hours through a team lead and the rest from line staff. That is the way it is going to be for a while though, because I am not going to bring in anyone unqualified just to get more hours for Brady. My focus will be school for the next two months, and then we will have all summer at home to get him ready for the next school year. The team lead proposed that we teach him everything academically in the coming year he needs to know for Kindergarten so that when he goes he can just focus on the aspects that are challenging for him such as the social interactions and sensory processing. I thought that was an excellent idea!

She wasn't above stroking me for all the good work we've done so far with Brady, and I wasn't above taking the compliments and feeling good about them. It was just nice to talk to someone else (who wasn't a mom in the same situation) about how up and down progress can be, and hear her approach to keeping him moving forward when he stalls like that. More than anything, to just have someone to bounce ideas off of who is right in front of me is an exciting prospect! I hope we don't butt heads about why she thinks a behavior is one way and I have a completely biological explanation for his actions and we battle over it.

So we will have our first "A" team meeting today. The director, intake coordinator, team lead and I will sit down at one of the cluttered tables in my house and assign goals and hours and design a program for Brady. I have always been kind of proud of the fact that my son has never had behavioral therapy. I realize now that I was being elitist or thinking my son was too high functioning for that. I was exactly like those moms who vocalize how "they thought they'd be done by now." They would follow the DAN! protocol and their son would recover and it would all be over by Kindergarten. We were all naive like that in the beginning. I now realize that I need to bring to him all that is necessary to meet our goal of a happy, well adjusted little guy. He will need more than biomed supports in place along the way to that recovery, which I do still see as the outcome. It is just going to take longer than I thought.

Volunteering and lottery tickets

2011-03-22T06:05:00.003-06:00

I was writing in my journal before dawn yesterday morning. I needed to prepare for my day which was, I suppose, in the making for two years two months and eleven days. I needed to focus on why I was feeling stress and what I could choose to do about it. I had come home from the swim meet, exhausted from being up around the clock for three days on round to a pretty big mess. Let's face it, even when I clean there still seems to be a mess! There was also paperwork everywhere. A pile of intake paperwork for speech therapy. A file folder for medicaid. A binder of research on behavioral providers. A new gluten free bread machine cookbook. Dog paperwork because I haven't even begun to make a file for our new family addition. AR records for Abby and Elsa's class. And more piles than I would like to count for the silent auction at Brady's school. Underneath all those piles was an even bigger mound of guilt for all the things I needed to get done, but instead I had spent my time with family. Good choice, but not without consequences.

I am not sure why or when we shifted to a stress reaction when there is a big project looming or a lot of work needs to be done. Is it because so many things compete for our time? Or is it that we do things alone, removed from the people who make it enjoyable? This lack of shared experience certainly leads to a sense of isolation that increases stress. I wish we could come back to a time when we embraced opportunities to give back rather than run away from them. I want to smile at that pile of unread books when I walk by my nightstand envisioning a lazy summer afternoon in the backyard swinging in the hammock and not cringe when I open my eyes and slam my hand on the alarm clock. I want to go back to a time when it was not about getting it done, but doing it, and bringing the enjoyment along with it.

I realized, first of all, that I was stressed because I skipped my vitamins for two days straight and no one wants that. I can tell because I start yelling at the kids again rather than talking to them, and the dirty floors bother me so much I contemplate hiring back the housecleaner I fired because she wasn't doing a good enough job. I also get that fleeting thought that I could just walk out that front door and not come back.

I also get stressed and frustrated when I volunteer for a big project because it points a laser beam on my life and the time I have been wasting not doing all those big projects around the house. Brady and I are alike that way. If we aren't going, going, going all the time (and being drug there by people in his case, or by responsibilities in mine) I guess we end up doing nothing.

So, what can I do about all of that? Take my vitamins, obviously. Try to keep up with all the things that need to be done so that they don't become overwhelming. I just bought this book at the Borders going out of business sale called jam it, pickle it, cure it and other cooking projects. The kids and I are going to make our own GFCFSF peanut butter cups, marshmallows, and graham crackers over spring break. Someday, someday I want my kitchen to steam with memories of my grandma's kitchen mingled with that pungent aroma of pickling. If I can ever get enough cucumbers to grow in my garden I will definitely give it a try!

What I can't do is change the way that I want to world to be: a place where we support each other in our efforts to enjoy the experience and not just check things off our to do list. I wish that I could volunteer for huge undertakings like the silent auction and others would come around me and fill in the blanks to get it all done and see what a beneficial thing it is to do for the school, for themselves, and for their kids to see how important it is to give back. I have seen it happen before, but it seems less and less prevalent in our society that when you assume a leadership role, there is a common understanding that you need followers to take your vision and make it happen. I guess what I need is real life followers, not the evolution that we have seen via twitter!

This will not stop me from volunteering in the future, but I need to change my expectations and lower my stress level first. If people who claim their life is too busy and they don't have enough time had any idea what an impact taking even a minute of my time away from Brady does to his progress, let alone my family dynamic they would bite their tongue! Every time I attempt to do something outside the home, he totally falls apart.

I guess his quitting eating at school and waking in the night and groping for words and being aggressive at school could not have come at a better time. Yesterday we had his intake evaluation for the Children with Autism Medicaid waiver. In this lovely afternoon, I had to list all the things that he cannot do. Like participate in any self care at all. Or take off his shirt. Or eat enough food on his own to sustain himself. Or not hit, scratch, or throw things at his peers at school or his sisters. Or leave the house without a tantrum. For an entire hour, I had the pleasure of sitting at my kitchen table with a total stranger and say really horrible things that have happened to us, to reveal my deepest darkest fears that you hope never come true. And try not to cry because Brady's case worker changed the time and my older children were home. At the end of the hour, she asked if there was anything else I wanted to tell her that didn't fit anywhere else. I just said "Brady really is a sweet boy and I love him very much" I don't know why that isn't of the form, but it should be on the first line.

We set goals for Brady during the year and change that Brady will be on the CWA waiver. For the first time, I set a goal for Brady to find something that he really loves and give him lots of opportunities to become really, really good at it. So many times, goals are only about working on things that these kids struggle with and they never get the opportunity to find something they are good at. The number one thing that we want to achieve in Brady's life is that he feels good about himself. If you woke up and knew you were going to have to do only things that were hard for you and that you weren't good out, I think you wouldn't want to get out of bed either!

Despite all of the things that he cannot do yet (and he can do so many things that we are proud of), that really isn't what this process is about. This is about taking the gloves and rose covered glasses off and telling the truth about what the darkest day in your house looks like. This is about me putting my pride and beliefs aside and doing what is best for my child to get him what he needs so that I can spend more of my time focusing on the biomedical piece that will bring about his continued recovery. Therapy is a band aid on a gushing would and biomedical is the cure. You need a bandaid sometimes so that you don't squirt blood on those around you, but you still book the surgery just in case the bleeding doesn't stop.

Ironically Brady's regular county case worker called minutes after his waiver caseworker left to schedule a visit. We had just submitted our annual application documenting our disability related costs (over $16K not including GFCFSF food!) for which they contribute funds on a need and availability basis. She had no idea he was getting the waiver. She said to me "Congratulations, I am so happy for you guys!" As if we had just won the lottery or had a new baby. I suppose in a way there is potential for this experience to be both of those things. I will always find it ironic how happy people are when they hear we landed the coveted "children with autism waiver" for as long as I live. We were promised on December 10, 2008 when Brady was diagnosed that the A word would get Brady all the services he needed. Two years two months and twelve days later, we are about to find out if this is true!

What it means to be a warrior mom

2011-03-17T06:21:00.002-06:00

I realized last night after attending my first biomedical support meeting that I would like to have a time period of my life that did not qualify for a support group. They are of great help, don't get me wrong, but you do get tired of being "sick and tired".

Infertility, twins, and now the A word, I have always called on and relied on the invaluable resource of those who have gone before me, and then reached my hand down to lift those coming up in those worlds. The A word world, well, I don't feel like I truly belong there. I don't know if it is because I don't want to or that every child is so different, but I know I do belong in the biomedical world. There I do feel at home.

I recognize the hope in some one's eyes when they talk to a mom who's child has been evaluated and deemed neurotypical. I ache with them when they describe that jolt of hope you feel when your child is having an on day and as close to normal as you've ever seen him and then watch him ripped away and vanish for up to a year. To relive that agonizing time when you don't know what is going on, but you know something is. It is wonderful that we know so much more than we ever have before and there is hope. It is maddening to think that hope isn't immediately available to newly diagnosed families.

The meeting last night was a skype book club with none other than Kim Stagliano herself. We were talking about her new book "All I Can Handle-I'm No Mother Theresa". She is a funny, smart, loud, opinionated, and strong person. My favorite kind. I have always enjoyed her passionate articles on HuffPo and she is such a workhorse at Age of Autism. Her coining of the phrase "Crapisode" wraps up the book in a nutshell. She gets it. She lives it. She has three girls with autism and doesn't apologize for not wanting you to feel sorry for her. Help her, sure, but don't feel sorry for her. I admire that. I don't want people to feel sorry for me or my kids either. We should instead admire our kids for how hard it is for them to get out of bed and put on their shoes and stay in that noisy gymnasium with the buzzers blasting a hole in their eardrums.

After she talked about the genesis of her book and writing career, we started to go around our small circle and naming the ages, gender, and functioning level of our kids. It was like a bad scene in a smoky bar in the seventies. Hi, I'm Penny and a Virgo and I swing. Wait, wrong meeting. When my turn arrived I raised my right hand and repeated, "I, state my name, my son is 4 and I've never (insert a blubbering fool here) said out loud that my son has autism." Being ever kind as autism moms have to be, Kim asked how old my son was when he was diagnosed, and I told her 2. "Oh he was just a little guy."

We continued with the normal questions about services through EI and she asked whether I was getting school based services. My friend looked at me and a laugh escaped her mouth. I had to admit that he wasn't getting services as he was in a private school. The question then became (I imagined the gears turning in her head) when had I started biomed and what was I doing? I gave her the condensed version of our story, about starting biomed at 18 months and escalating as his disease progressed, all the way to chelation and next we'd be moving on to viruses.

In a nutshell she called me a warrior mom and "took her hat off to me" in a way that was interesting to me because she always wondered how young moms just starting out could dive in head first to biomed. I have always been the opposite. How could anyone NOT dive in and save their child? If they were drowning, and if you've ever seen a child losing skills they once had, drowning is the best metaphor out there, would you not dive in and risk your life to save them? Or would you not use the life ring out there that someone else discovered? I'm not the type of person to see a drowning child and send in a swimming instructor without a life jacket. Biomed has been our life jacket to keep our son alive until he was able to learn from the swimming coach.

That day has come. It is time for him to learn from someone other than us and it terrifies me. I have accepted that I have to swallow my pride and take the help in the form of the children with autism waiver. I have had to strip away all the candy coated goodness I recite when people ask how my son is doing. I had to stop leaving out that he gets up as early as 3 am a few times a week and has started backsliding again. His intelligibility has gone down, he is groping for words again, and struggling at school. Mostly he just feels bad about himself and I want to give him the skills to feel great about what a wonderfully person he is with an amazing sense of humor. While I was at the meeting last night my husband found him in the backyard naked. Brady looks up and tells Brian that "mom said I'm in charge". Apparently he had finally remembered that I told him we could go swimming when we got home, four hours earlier.

Kim talked about being a "curebie" or a parent who is trying to recover their child from autism. She loves her kids how they are but would love to take their autism away. I guess I take that one step farther, and unless you know me personally I imagine this would touch a nerve, I don't love my son the way he is. I love my son for who he is, deep down inside, and I continue to love him when that person is nowhere to be found. If I loved him the way that he was, I wouldn't be working so damn hard to make sure the world gets to meet the snarky little devil every day he shows up for life. Lest you misinterpret what I am saying, I think that the love we have for our children is unconditional and I do love my son no matter what infuriating thing he is arguing with me about. But, I want the prize. I want him to be Brady without disease. Not perfect. But perfectly Brady.

I had been thinking all day what it means to be a warrior mom, so it was the millionth ironic thing that has happened to me in my life to be called that. I would just like to share what an average day of a warrior mom is like. I am no different, no better, or more hard working than any other mom of a child with special needs. The kids are all special and given to moms like me to protect them from the harsh world until they are ready to fully enter it, guns blazing.

Wednesday is a school day for Brady. With lunch. Except he has refused to eat snack or lunch at school all week. But I had to drag him there because I had a busy day straddling the two worlds of preschool and elementary school, a mom with NT kids and one with special needs, and a mom who deludes herself that she has time to head up a silent auction and get her fat ass into shape. That kind of a day. I was supposed to hit up Pilates that morning, which starts at 9 AM, the same start as Brady's school. Instead I bolted upright in bed at 4 AM, not sure if I heard Brady up again like the previous morning. You see, we just got a new pug puppy, and if Brady has a dawn rising morning, he wakes up the dog who wants to exit his crate immediately and starts weakly howling until he gets out. Which means that Brady tears into my bedroom in his one-volume voice, read loud, and says "mom Odie wants to wake up". Then I have to scramble out of bed in a panic trying to keep him quiet and not wake up everyone else in the house.

Except it was 4 AM and he actually wasn't awake and I was. My brain was turned off and all the Jin Shin in the world seemed to not be able to stop the thoughts of how to raise more money for Brady's school or which therapist to hire and how to schedule his therapy using new providers in a way that didn't piss him off or require me to have incessantly clean my house inundate my exhausted brain.

I did eventually fall back asleep, a rarity in my life. Except that meant that I wasn't up early enough to make Brady's medicines and vitamins and lunch and snack or shave my legs and it was going to be almost 80 degrees and I would be sweating before I even made it to exercise. Did I mention I still had glitter paint in my hair from the day before? I wasn't going to make it to pilates, but I put on my workout pants and we pulled out at 9 AM on our way to his school with my silent auction and cake walk signage in hand. At least it wasn't my turn to sell tickets before school. I dropped him off and the signs and realized that the next day was St. Patrick's Day. And two of my kids with allergies needed special snacks: breadstick shamrocks and a sugar cookie with green sugar on it. Awesome. Off to the grocery store for a few items and then I had to rush home to walk the dog before I went to the girls' school for my weekly volunteer day. I looked awful, but I went and laughed with the kids and paid attention to them and shared their normalcy. I pretended like that was just the way life was. You went to school, you learned, you ate lunch, done.

Straight from school, I went to my first personal training session at our new gym. After the incident at the Y we had to switch. I won't bore you with those details but let's say I am totally out of shape! Back home again to let the dog out and run to pick Brady up from school. The teacher tells me he didn't eat at all again and wondered if she should have called me. I told her she should call me in the future if my son is at school for four and a half hours and doesn't eat anything. I drag Brady to the car and all the way home he is begging to go to the toy store. He gets home and only wants tuna and chips for lunch. Great. I am not going to go there about how I failed and gave in and let him eat it even when I didn't want him to have it. I used it as leverage, as well as a Thomas movie on his iPad so that I could get him to walk up to the girls' school with the dog in an hour.

I love having the dog to drag him all the way to school. He has to get some activity and this seems to be the only way to get him out of the house anymore. As soon as all three kids are home, the girls get moving on their chores and I start making the breadsticks for the shamrock snack and Brady helps make the green sugar (well xylitol). I luckily convince my daughter to accept these as her special snack as there is no way I will have time to make sugar cookies or sunbutter greenies in time. Originally the plan was to make sunbutter greenies for both classes, but one of the kids in Brady's class has a brother with a peanut allergy and she is afraid he will be allergic to sunbutter as well. Note to administrators: do not put all the allergy kids in one class, there is nothing left to eat!

I had just enough time to make the shamrocks and cook the tacos for everyone and tostadas for Brady and jump in the shower. Remember the glitter paint in my hair? And the fact that I still hadn't shaved my legs? Thirty minutes until I had to leave to meet two friends at our sensory gym where their husbands would grab the kids and we would have dinner before the biomed support group. I somehow shower and throw on a clean dress and have five minutes to spare with which to put on makeup and give Brady his evening vitamins and medicines. I forgot to mention that in the shower my shaving cream quits working one leg in. I have to snitch my husband's shaving cream so now I smell like half man and half woman. Lovely. I leave the house only five minutes late and meet my girlfriends and we end up with very little time to grab a bite. We inhale salads and sandwiches and chatted about going to the Autism One conference and diets and supplements and therapies and school services. We booked over to the meeting with the intention of grabbing a glass of wine after.

That's a day in the life of a warrior mom. We don't do it alone. We have friends and husbands and moms and therapists and teachers and fellow parents whom we trust and rely on to help us get through the day. It is important to nurture this network to get through these treacherous waters.

One day I hope my child doesn't need his life jacket or a swim coach, or even be in the same pool. I am thankful and amazed by the fact that so many people have made it possible to stop him from drowning and learn more each day. I am a warrior mom and I wear that name with pride.

A New Year. Old Failings.

2011-02-08T23:04:00.004-07:00

I haven't even felt the slightest bit guilty about not blogging. Seeing as though I feel that the entire weight of all of society's problems lying on my shoulders and all I've been just a *bit* busy. Public schools and how to pick the best of the worst. Poisoned children. Not being able to lift my head off the pillow for weeks as my house was so very sick for so very, very long that we actually had Abby tested for mono when a case came up in her classroom.

I can't remember being that sick since the girls were twinfants and all four of us were sick at the same time. I made an emergency call to my mom to come save us. Isn't it great that no matter how old you get your mom can always save you? Best miracle ever. I hope I feel the same way when my kids are calling me in their thirties. I actually think I will as I'm sure my girls will stop calling me for that decade between 13 and 23 so it will all even out.

I don't even know how to update except to say: no, I haven't sent out our holiday family portrait that was so important to me; yes, we did find a school where all three kids could become fully participatory members of our society and haven't heard if we all got in or decided if this means we will put Brady in kindergarten even though I am terrified to; yes we are taking only the older kids to SIL's wedding and I am so excited for them to get a weekend off with just us for the very first time; no I'm not prepared for the silent auction that I volunteered to head up at my son's school where they don't give me dirty looks when my son throws something, hits, or scratches; yes, I am somehow married in the midst of all this post-holiday birthday flu-like viral illness that debilitated us for months; No I haven't as of yet fulfilled my New Years Resolution to organize my recipes but have been trying a ton more; yes, Brady is turning five this year and we have to plan his first big every0fifth-birthday trip and no, I can't believe I still have all these supplements in place still but at least he is still making progress; and finally, we did win the lottery.

The "my child has been diagnosed with a lifelong developmental disorder and I could actually get all those services they promised me two years ago" lottery. Or in our state, better known as the "children with autism waiver". This means explaining in great detail all the shortcomings and delays and faults he still has that set him apart from his peers. Which evidently because of all the press on the prevalence, he has, at least according to the dimwits working at the childwatch at the Y. Talking about these things takes me to a dark place and attracts a negative energy not good for any of us. We would have to accept at least one behavioral consult visit a month to finally get Brady the OT prescribed that he has not ever received as frequently as needed. We could get his speech evaluated again and see what (if anything) would be necessary to get him caught up with his peers so that there wouldn't be these questions about whether he was ready for kindergarten. Dancing with the devil, in my eyes, to get what he does need while having to accept something I would have to swallow deep to accept.

The main reason I haven't been blogging is that I have gone back to my journaling practice in the morning and night. I seem to be able to keep that positive whereas my posts here seem to elicit more anger than I would like. I have a lot to be angry about but no longer want to be an angry person. I think I may have been watching too much Oprah lately. But I did love her quote that forgiveness is letting go of the sadness that anything in the past could have turned out differently. I have to focus on the future, what we all need right now to be happy and healthy and besides sleep it is to be less angry and more hopeful. Hopeful that I will get the last of the items off my to-do list and my family will end up exactly where they are supposed to be next year so that we can all have peace. That should be my actual resolution: Peace. Not recipes. OK, as always resolutions so very rarely happen!

Anniversary of the A word

2010-12-16T05:28:00.006-07:00

The anniversary of the A word came and went. I didn't jettison back in time to that day wanting it to be different, or think about it at all. In fact, the only indication that Brady had been through a different life experience than the rest of us, aside from his utter brilliance of course, was his horrific experience at the sight of the vial to be used to draw his blood for the study. His need to have blood drawn on a more regular basis than most people, let alone kids, has left him terrified of the experience.

Even seeing what appeared to be the ghost of the developmental pediatrician who diagnosed him 2 years minus one day didn't phase me. I was holding my head high that I had moved on and not only dropped my grudge and stopped dragging it behind me, but threw it in the donation pile to the thrift store that helps those with developmental disabilities (shall we skip the irony that I have been shopping there my whole life?)

But yesterday I was forced to go back into the past where I have kicked and screamed and tantrummed my way out of ever going. I have danced around that big elephant in the room with "what if" strumming in the background, but never worked up a sweat over it. As a part of the study, I was sent two questionnaires. I am now very thankful they were self administered and not asked directly by researchers with careers I thought I'd be pursuing and not on the other end of the couch so to speak.

I had to call my mom because she was the one who noticed it first. In the hustle and bustle of raising three kids I knew, but didn't want to know, or didn't know what it meant, that at 18 months my son was slipping away from me. He did have a speech delay before that, without a doubt. But no other boxes were checked. He was within the normal curve in his development until that point. Then. On November 11, 2007 he got his flu shot and DTap on the same day. Six months before that he got his Hep B, Hib, pneumoccocal, MMR, and chickenpox. On the same day. I just wish we could come to the point where if a child is showing delays that we don't vaccinate further until we get it figured out. No child should EVER get that many shots in one day. Even I didn't know until last night that he received that many shots. I was blindly following the advice of my pediatrician. The studies showed there was no link between immunizations and the A word, right?

I have always said that I couldn't point to his shots and say they were a definite trigger. He didn't get a fever high enough to have seizures. But around that time that he got his twelve month shots, his speech began to falter. After 18 months, he then began the downward spiral that led to losing his language, motor skills, and begin to fall into other category of delays until he won that big fluffy unicorn prize at the carnival. The A word. The answer to all of his prayers.

He was supposed to get access to all kinds of services and qualify for financial assistance to pay for all of it. We didn't get one thing. He never got off the waitlist for financial assistance. Our insurance didn't cover his speech, and only 20 of the recommended 62 OT visits a year. Forget about the music therapy or listening therapy equipment or evaluations to get to pay for all this out of pocket. So in the treatment section of the survey questionnaire, I checked way more no's than yes's as far as having ever once seen this provider or receiving these services. No, our son has never received behavioral therapy. Yes, he is lucky to get one hour of services a week. If I average that out over the year, it is not even that high.

As a family, we were supposed to get answers. Answers the professionals who diagnosed his lifelong disorder couldn't provide. Why was he playful with his sisters and other kids he knew, but less likely to do so with kids his own age, or kids he didn't know? Why does he have great eye contact sometimes and not others? Why does he have a skill and then lose it? Why can't he learn a skill and demonstrate mastery consistently? Why does he have to be taught certain things in different ways, or at all?

I am still waiting for these answers from them. They have had plenty of time to figure it out. In the meantime, I have come up with my own theory. It's because what happened to my son, and not who he is or what he has, destroyed in him the twinkle in his eye and his love of learning. It is not autism after all. Because autism doesn't get better, doesn't fade in and out, or show signs of disappearing. Autism is forever. Nothing that limits my child is forever. A wise woman once told me that people can't make us feel a certain way or do something to us unless we let them. Someone has to make this stop. I have to make it stop for my family.

I can't go back in time and never go to those Dr. appointments or stand up for my child not let them assault my child's immune system. I also doubt that me raising these questions will stop anyone else from being able to do so. I couldn't be stopped from being a sheep in the herd and I think of myself as a discerning intelligent woman.

What I can do is not let them ever touch my child again. I can choose not to let them make me feel crazy for pursuing all that I have done to heal my child. The only thing I did get from winning the A word prize is my child back, little by little every day. I would not have pursued with vigor the treatments we are using had we not been scared shitless by their prognosis and prescribed treatment. I will never forget the picture of that cubicle in the back of the classroom showing three bins with pictures for the child to sort in order to collect himself. That was their outcome. That was their end result. That was the best they could do for that child.

My child deserves more. He doesn't need to go anywhere, or be seen by anyone who would limit him in that way. I won't let them. They can't still the twinkle in his eye and love of learning ever again. We've fought too hard to get it back. too many people in my life are trying to do this to all of my children and I just realized it is to root of what is making me so unhappy, pissed, and weepy. I am letting them do it. I am letting them make me feel this way and it stops today.

I am keeping the girls home from school today to go to their brother's Christmas program. I am going to squeeze him into a black velvet jacket and sweater vest. I want him to look really handsome up there like all the other kids while he is not singing. At least until they sing "we wish you a merry christmas" and he gets to do the popeye arm swoop, which he does with enthusiasm.

It will be a change from the last Christmas program he participated in, days after his A word diagnosis. We had spent months preparing him to sit there without throwing a fit when the kids played the bells in his ears. The OT even went to school to help. I sat silently weeping in the audience knowing that people thought my kid was different. I couldn't get him to wear a button down shirt at the time. I felt hopeless when all I should have felt was joy that he achieved the goal of sitting there while the bells were playing. He wasn't the only kid not singing. I just knew that there would be a day when he was old enough to really stand out and I wasn't sure if he would be singing at that point or not. I still don't because Brady only does what he wants to do most of the time. It isn't because he can't, he just won't!

Thinking of that time, I feel sad that I let him down for not believing in what I knew he was truly capable of. I let the A word steal that from me, and from him as a result. I will try not to listen to people who want to tear down what we have built or limit us, and instead seek out those that want to lift us up and surround us with the love and support that we need to be strong. We have openings in that department if you are still looking for work.

Merry Christmas to all and remember the spirit of the season.

No wonder I have no time for myself!

2010-12-09T05:38:00.003-07:00

Yesterday I had my pregnancy interview for The Study. It was supposed to take an hour and a half, but if I wasn't a good girl and didn't have my pregnancy calendar and my caregiver interview guide, it could well take up to two hours. Meanwhile, two and a half hours later, despite my possessing said documents and medical records from five years ago I still couldn't get off the phone.

It was fascinating to me the questions they asked. I had no idea they were going to ask about all my pregnancies, not just the one with Brady. And why on earth would it matter if I douched sometime during the three months before getting pregnant with him until I finished breastfeeding him? I'm not sure since I've never done it in my life but if douching causes the A word, I better not start. Sing with me "let's hear it for the douchebags..."

I know that most people got to skip a lot of the questions, but in my life I've skipped little for my own comfort. Medications to prevent miscarriage? Yes. Surgery to become pregnant? Yes. Ever been told it would be impossible to get pregnant on your own without thousands and thousands of dollars and sinning against the Pope? Yes. Did your husband have surgery? Yes. Were there complications with your pregnancy? Yes. Were you sick with your pregnancy? Yes. Did you take medications? Yes. Were there complications with the delivery? Yes. Was your son sent to the NICU? Yes. The only question I was able to answer no to was the diagnoses for the girls. No. They have none.

Looking at all of that, you could conclude that there is no possible way that my answers will lead to a statistically significant cause for the A word. Especially not a genetic one. I was provided the opportunity to detail each delay Brady had and list each medication or supplement we utilized to address these delays. For example, for motor planning and coordination I listed Acetyl l-carnitine and Co-Q10. For speech delay, I was able to list fish oils and b-12 shots and withholding vaccinations. For behavior problems, I listed vitamin E and digestive enzymes and Jin shin. As you can well imagine this section took the better part of an hour as you then had to go on and state when he first took it and how often he takes it. The bummer part was that I couldn't include all the things we are doing today as they only wanted to know through his third birthday.

At the conclusion of the call, she paused and asked "What do you think causes autism?" I almost dropped the phone and I'm pretty sure that I started drooling at the opportunity to share so much of what I have learned. At the end of the call she told me she learned more from me than all the other families combined!

I told her how nice it was to be asked my opinion. In summary, I told her that there may very well be a genetic predisposition, but that given the huge number of variants, I doubted they would ever find it or even be able to do anything to prevent it. They have had decades to find it and all that we know is that there is more of it. I am sure there is a genetic predisposition in my family, but this doesn't explain anything except that we have discovered we all have to varying degrees food allergies, autoimmune reactions, inflammation, a decreased ability to detoxify, a requirement of special diets and supplementation that others do not have. I requested that instead of looking for a cause directly, which has not netted results to date, that we instead look at the children who are getting better, recovering even, and that through their healing we might find clues to treatment and prevention. We have to look at all the heavy metals in our environment (no I didn't go there with shots or amalgalms) and understand why some of us hold on to them and why removing them leads to such dramatic improvements. But above all else, the same people can't be looking at the same problem in the same way, or we will get more of the same and that means millions more sick and hurting children without a voice.

Her last question was: "why did you agree to participate in the study?" I again took pause. I replied that if families like ours that pursue all viable treatment options stayed away from studies like this that our part of the ASD community would continue to be ignored and their stories not be counted. i refrained from adding "and last I heard we were the only ones treating kids with dignity and honoring them where they are and healing them."

I really don't know what will come, if anything, from this study, or my participation in it. It seems that they think they are genuinely looking for the answers. I have been treated with respect and my opinions honored so far. I am afraid that the study itself will show no correlation between anything because if we are dealing with 1% of the population it is hard to find statistical significance when we each have our own issues we are dealing with. It is my sincere hope that one person will be changed by my having been there and start looking where no one has looked before: at the truth and hope that lives where recovery happens every day.

Let me say that I do know one thing that came from our participating, target gift cards that I spent on Abby's Christmas present. You might think I should spend them on Brady. I spent them on Abby because she, more than anyone, is of such support to he and I and he loves her to death. I cannot imagine either of our lives without her. She deserves to have what she wants just as the slightest token of appreciation for all that she does for him.

As far as the rest of the study, we have now completed our pre-interview, child evaluation, cheek swabs and pregnancy interview. This afternoon mom, dad, and Brady will get our blood drawn and Brady has a short physical exam and a hair sample will be taken. Then I have a caregiver interview for three hours on the 20th. The study is supposed to take 14 1/2 hours all together so for me I'm guessing at elast 16. I can't imagine that includes travel time, scheduling time, etc.

I know they have requested all of my medical records and Brady's and that would take a small village a month of Sundays just to read. This is a huge undertaking that is unlikely to impact us in our lifetime. At least, though, someone is pretending to do something and not completely ignoring the problem.

In the meantime, if you wait for someone to bring the mountain to you instead of trekking to the mountain...you're going to die of starvation while freezing. I like to eat a lot and maintain a temperature of 68.5 degrees so you understand where I'm coming from.

Procrastination leads to inspiration

2010-11-29T12:00:00.003-07:00

It's Monday. The kids are all back in school. Finally. I'm supposed to be sweating it on the treadmill at the Y right now. Instead I'm wading through 518 emails in my inbox and have somehow whittled it down to 31 messages in my inbox that I just don't want to get rid of.

This is one of them.

Go read this article. At least watch the video. It will make you cry, but in a good way. Get your tissues ready.

You see, we have been debating about whether to get an iPad for Brady for his big Christmas gift. There are so many great learning apps out there. We know he is highly motivated by technology. But he is also obsessed with it. I am not sure right now how to balance his obsession with the learning that occurs as a result of his interest in it. I know it is just a management issue. But that requires time and a learning curve, and until we have these things in place, well, I don't think it would be a great idea.

But man is it cool.

This video, and all that it elicits in me, leaves me less conflicted than usual. Sure there are so many kids trapped wordlessly in their body whether immobile or not, and being treated poorly. It makes me sad, but then I see a mom who feels obligated to give her son a quality of life and not just keep him alive at any cost and I feel inspired again.

This world has ripped open a hole inside of me capable of deep pain and burdensome joy. I have always been one to live on both ends of the extreme but the bipolarness of existence that comes once the A word is emblazoned on your family crest jetissons one into a rubberbanding of hot to cold in an instant.

Not that I am going to try and get all anniversary on you, but the date our world changed is coming up next month. (What? You didn't get me anything? Not even a gift certificate to my favorite therapy catalog? Shame on you!) The only reason why I remember is that it is the day after my girls' birthday. I have truly moved past the point of anger and into one accepting the fact that I can't leave baked goods on the counter and have to make my lunch salad at breakfast or I will weigh 300pounds due to all the stress eating. That if I sit around blogging all day and feeling sorry for myself, dinner will be something with gravy on it (my gfcfsf gravy kicks ass). I find myself seated stagnantly in the face of denial in the big grief wheel of life. I, to this day, deny that my son has the a word (maybe instead of shades of gray, it's "shades of a").

I have learned more about what my limitations are than what strengths I possess. I have had to bear burdens most mortals would crumble under. I already knew how strong I was as a person. I have walked through fire before. What was a surprise was the weaknesses it has revealed in me, the gentle nature of my kind, loving heart that was hiding beneath the armor of my iron will.

I guess in the long range picture of what our iPad moment would reveal, I feel like we have already found it. Our son's voice. His sense of humor. His ability to make anything happen. Eveything we know and love (and are driven crazy by) regarding our son we know and feel every moment. It is just a matter of time whether he will choose to reveal this to those outside his circle of trust.

Last week I told the interviewer how he saw a picture of a buffalo on the front of the animal cracker box and asked me to get him a buffalo please. The kid demands truth in advertising! He won't eat cereal that has a picture of fruit in the cereal, even if we all know there isn't any fruit inside. I told her he refuses to settle. The only problem with the rest of us is we have all settled for less than we wanted and seeing kids like Brady who stand for their principles reminds of what we have lost.

Some people try to change kids like Brady. Others give them a voice and start demanding what they were promised in the first place. Now if there was only an app to get my son to eat fruit and meat, that I'd be up at 3 AM to buy!

Holiday traditions

2010-11-24T09:29:00.003-07:00

My son's baby book is blank after he said his first word at 7 months (he said Hi to his sisters when they got in the car after school) and finally crawled at 10 months. It was too hard to write what he wasn't doing so I put it on the shelf for good. Many parents of children who don't have delays have blank baby books so this isn't a crime. It just stings a little more for the reason my son's is blank.

This Thanksgiving we are starting a new tradition. This idea came from a brain research conference my mom attended during a self esteem symposium. Recently we bought a nice colorful journal. Each time something great happens to each of us, or as a family, we are going to record it in this book. We plan on getting a new one each year at Thanksgiving. We have so much to write for each our three children and our family as a whole that we are proud of. We are reclaiming and redefining what feels good and how great our kids are doing according to our standards and not milestones dictated by the norm. Who wants to be normal anyways? Normal is boring and we are extraordinary! I have a sweatshirt with the big red S to prove it.

Individually and as a society we have lost touch with traditions and the sanctity of feeling good for what we have done and who we are as opposed to what we have. This little step will reinforce our intention to be connected every day and institute a process to encourage us to talk at family dinners and create a record of each year that passes. Something crazy might happen such as getting a family portrait each year!

There is so much to catch up on for the last year. Elsa making it to state for swim team. Abby making it to swim practice each day. Brady finally not being the last person to learn something at school. Elsa running in her first 5K. Abby being in the front row at the school musical and singing her heart out. Brian learning to tow the trailer and not ripping the bumper off like the poor old man we saw at the gas station this weekend. Me getting everyone in the family on a multivitamin and fish oils (oh and I ran the 5K with Elsa but I've done that before). We are always proud when these things happen but probably don't draw enough positive attention each and every day as much as we should.

I recently had the first positive school conference of my son's life. They showed me work that I didn't even know he knew how to do! He is even ahead of some kids (and this is a mixed age room so that is saying a lot). He loves school, loves his teacher, and really enjoys being with the kids there. He is smart but hasn't always been able to prove it. His teacher just gets him and loves him for where he is and who he is. That is all we could ever ask for for our kids! He can draw a face and connect the dots from 1 to 10 and count with one to one correspondence from 1 to 10. He lost this skill and finally has it back!

There are no words for how grateful I am that he is exceeding every expectation everyone has ever put on him. The fact that this is self directed and initiated by him is nothing short of a miracle. My lesson from this conference was a reminder to expect great things and you will get them. Never limit our kids by not expecting the best from them.

We also elected to have our son participate in an autism research study. The difference between this evaluation and the first time he had the ADOS was so night and day I can't even begin to tell you. He hasn't lost his diagnosis or anything but he is closer than ever before to looking as close to normal compared to peers as possible. He was having fun and engaged and cooperating and his language has come so far I wish they could have seen video of how far he has come the change is that dramatic.

Then there are the little things that add up to big life progress. He can now walk across the balance beam at his favorite playscape unassisted like all the other kids. He proudly smiles each time and cheers on other kids as they go across. He is having kids over for playdates and playing unsupervised. They are playing games and having back and forth conversations and active pretend play.

We have already seen some relief in the amount of supplements/regimens he is on. We have been able to keep his yeast under control without biofilm for the first time ever. I can see the light at the end of the tunnel. It is hard sometimes to stay in it, but it is worth every minute of progress. I have become less reactionary to bad days and my son is recovering back to normal behavior much quicker than in the past after food infractions.

It seems that AC chelation just becomes a part of your life and I imagine I will look back and it will be a year, then two and won't believe how fast it's gone by. I think everyone who takes that leap of faith and tries it only regrets not doing it sooner. A weekend off to sleep now and again would be nice but I don't want to waste one day not progressing towards healthy recovery.

Have a great holiday with your family and be thankful no matter where you are in your journey that there is hope out there for your family. I will take time this holiday season to spend time with each child thanking them for what they have taught me. I am a better person each day because of all the challenges they have put me through. I no longer wonder what it would be like if life were easier, but just am thankful that I am able to learn life lessons without things being even more difficult. I do strive for peace and tranquility for my family, but for now I'll take calm pajamas days in the chaos of life.

Does your cup runeth over? I seem to have misplaced my cup again...

2010-11-24T08:36:00.002-07:00

The fact that I am not sitting around dwelling on my thoughts, and subsequently writing about them, actually makes me feel good. Not like in the past when I failed to post every day, but in a zen balanced mothering type good mojo kind of way. Sure, I've fallen prey to watching the Sister Wives honeymoon special and Oprah's favorite things just like everyone else. But the bulk of my time has been spent as thoughtful experiences with each of my kids and they are all doing better because of it. After a rocky start to the school year we seem to have hit our stride.

The question in my life that has haunted me since they were first born is: why isn't that enough? Why can't I just be happy when I have done everything I can to make them feel good about themselves, and they actually do? It's not like this is a small, easy feat. It is hard tedious and exhausting work (yes, ok, and rewarding). When is good enough good enough? I have managed to wrangle this sentiment when it comes to housework, for sure. So why can't I be satisfied with what I have and be happy and content and go about my day?

I have no idea. I do know it allows me, compels me to force an issue far longer than anyone else I know and perhaps to their dismay and discomfort. Take this issue of bullying. I have been working on an updated policy that represents victims' rights and incorporates an educational component. I have taken it to school board members, committees, community superintendents and have been less than satisfied with their lack of response or sense of urgency.

These meetings and research in preparation for these meetings takes valuable time away from my family and has resulted in little more than frustration and a lot of ranting and raving (maybe screaming a few times) from me. It seems that everyone else involved in the cause has given up hope that change will ever happen at our school due to a lack of leadership and that the leadership is solely to blame for the problem. Maybe it is the breadth of experience or unfortunate wisdom I possess on this topic, but I know that this issue is deeper than an isolated incident or person. My kids have experienced bullying on more than one school campus and on more than one occasion. Leadership has varied in the competency and human decency when dealing with it, but there are larger forces at work that allow this to go on.

So how long do you fight the good fight, when do you settle for good enough, and when do you decide something is so flawed and fractured that you alone cannot put the pieces back together again and proceed to hide the pieces behind the couch and move to a new house? For me, the answer isn't as clear cut as it is for everyone else. I don't like to quit anything, I think anything can be accomplished if you work hard enough. I have left schools when nothing was right and only a few things are left that are right. But the older I get the less energy I have and need to prioritize where I go with my passions. Most of it has to stay home right now. But some of it has to be released into the world or I get cranky and filled with contempt. I have to have interests outside of these walls and why not make it about something that results in positive change? One can hope and dream, especially this time of year.

Let the holiday season begin!

2010-11-06T11:26:00.003-06:00

Pretty much from the week before school starts until New Years I do not sit down. I don't have time to breathe or think or even write. The end of the year blows past me with the force of hurricane winds. Back to school shopping, first day of school, back to school night, teacher conferences, soccer practices, volunteering, projects, homework, Halloween, charity runs, parties, dinners with friends, school musicals, special treat days at school, the girls' birthday, our Christmas Eve party, Christmas. It is a whirlwind of constant activity amidst which you have to pause and catch your breath and try to love and hug your kids as much as you can.

I only notice this occasionaly, such as right now in the quiet of the house on a rare Saturday morning when I suggest my husband take ALL the kids with him to work out, or the five seconds in the morning shower between trying to remember if I already washed my face or not and my husband trying to barge in for his turn. There isn't a lot of thoughtful pondering in peaceful moments in my life right now. As any time outside of school I try to separate from Brady he pleads "I neeeeed you."

And he still does, but I have been trying to step up my expectations of him and not let him get away with quite so much. It is hard to tease out how much is that he is a third child, a boy, or one who learns things on his own time while I still try to be on time. It is so much easier just to do things myself or have his sisters help him. But, we have all reached that point where we just don't want to do it anymore, and know that he is capable of somuch more if we would just let him try and give him the time and space to succeed and fail. Granted, the process for most things takes much longer than with other children. Nonetheless he has intense desire to learn things and do them on his own. We are the ones who have to change our brains to fit into how he learns things to help him be successful.

We tried forever to teach him to pull up his pants, one hand on each side, hand over hand for I don't want to even contemplate how many years. He now puts one hand at the front, one hand at the back, and when you tell him to pull up his pants says "no, underwear first, then pants." It all makes sense in his head, on his terms, and in a way that he can make his body cooperate. I am so proud of him in these moments. We are now learning to completely undress, pick out clothes, and dress all in his room (as opposed to one of us chasing him all over the house and forcing the process on him just to get out the door). He is doing amazingly well. We had to have the same conversation with the school to not let him get away with any more than the other kids. He was getting twice as many warnings and started to act out. As soon as he had the same expectations as the other kids, he stepped it right back up and was doing just as the other kids did. That is what all kids want, really, to be just like the other kids.

Last night I almost teared up listening to Abby teach Brady the ABC song. She is so funny how she has learned to sing some and pause for him to fill in a portion. She doesn't understand why he doesn't learn the beginning of the song first, but loves him so much that she is patient and carefully observes what works and asks for ideas of what to do to help him learn. She is going to be such an amazing teacher when she grows up!

Elsa is struggling a little in third grade. It is a hard transition year in school, and it seems she is not getting all that she needs to feel good about herself. It could be the lack of recess in the morning, the teacher, the work, the budding hormones, or all of the above, but I am just trying to be there for all of the children and give them more than they need of me and my time, love and affection. That is what I am working on this year. Pausing and loving them up because kids can't get enough of it.

I see just the opposite happening out there in our world today and that is another reason why I haven't been writing much. There aren't a lot of positive things to say. I have been fighting with the school and district about the bullying policy and can't close my eyes without thinking about the kids being wronged out there and noone sticking up for them.

I am finding my quiet moments in the middle of the night, but they are far fom peaceful. I am struggling with those eternal questions of how hard do you fight for change when it seems like an uphill battle and when do you cut bait and run? How can you make other people rise to the level of your own high expectations if their own are so very low? Why the hell would you bang your head against the wall? Since when are people so freakin afraid to roll up their sleeves and do the dirty work?

I just think it is a very low point in our society and I somehow have to be able to project hope and values for my children to one day grow up and strive to make things better. I am sure my lack of sleep is not helping, or spending my day talking to mindless bureaucrats isn't helping my mood, but I don't want to get mired down in the muck and just complain about things, I just want to do the work to change it.

So while I spend my days while Brady is in school trying to cram in as much time volunteering in the girls' room while banging my head against bullying in meetings or phone calls or petition writing, I somehow have to find time to clean house, grocery shop and cook dinner. And not one of those things needs to be more important or take more time than just being with my family.

They are the reason I work so hard every day, fight for causes I believe in, and strive to be a better person and example of a good human being. They are the reason I don't sleep very much. I take every last ounce of energy I have to make sure they have everything they need to live their lives to the fullest. Now I just need to teach them that sometimes good enough is good enough and let's leave the laundry and the dishes, crawl into bed together and read books, even sleep. Sleep. That sounds like a perfect Saturday afternoon plan.

Brady's bananas

2010-10-23T21:28:00.003-06:00

Some of you may be wondering what it is really like, to live with a child differently abled. That is how I have to look at my son and all the ways of the world that were being lost on me. This isn't one of those "my life is better for having gone through this" posts but more a "I seriously have to laugh or I'd cry" moment.

Imagine you are driving in the pickup truck in the movie Twister. Somehow your windblown hair and low maintenance makeup looks at home with your wife beater tank top and ruggedly oddly handsome man beside you. He gets you. Silence swirls around you comfortably even as the rain starts to pick up and the wind starts to howl. Suddenly a funnel cloud forms not far enough away and things start to fly. And you see something your eyes can't register but somehow your mouth utters the word, simply and without panic or fear "Cow" as a gargantuan Jersey seemingly floats across the windshield.

That is how it is meandering this world with Brady. We walk by men on the path and he looks them in the eye and points and says "Moustache!" As we were driving home tonight from a rare dinner out from our local GFCF pizza stop, he sings "Banana phone" (of course it sounds like pone).

If you walked in our shoes, lived our lives, you would be laughing right alongside of us. Not panicking or freaking out, just going with the flow. As symptoms come and go and progress fades more in than out, we can sit back and enjoy the results of our efforts. And love him where he is, and accept him as a part of our family because he does in fact have our whacked sense of humor.

Just try to get the banana phone song out of your head.

As we prepare this week to take Brady for his evaluation for the SEED study, I know who he is and where he is and how far he has come. I know we could be spending our children's college fund and hundreds of hours of therapy a month and may end up in the same place. But I have to choose sanity and balance and laughter above all else.

Besides, I cannot believe all the nursery rhymes and songs and shapes and counting, (but not letters....he says "they are not my favorites") so many academic concepts he is bringing home from school. He is blossoming. He even told Brian yesterday "Good Bless You". Then he told me "I'm going to take this to the recycle bin." OK, Brady, go for it. If you ask all the kids a question, he'll raise his hand the highest and scream "MEEEEE!"

I don't want to look back and wonder if I am settling for "good enough" for him, but I also know the level of resposibility I feel for all of my family. My girls. Me. My marriage and husband. We all do better when we get just a little of what we need. Now if I could just get the girls to stop fighting......

I hope to write more of an update on the bullying policy I am working on for their sake soon. Life is best spent living than gathering or examining and I have not spent enough of my kids' life living and showing them that. I endeavor to do more and show them more and have less. I think I'll start with the books. Again. So hard to get rid of them....

Cooking Family

2010-10-05T10:09:00.008-06:00

Penny's Gluten Free Flour Mix:

2 cups white rice flour (Authentic Foods is best...I really dislike Bob's White rice)
2 cups potato starch
2 cups Tapioca flour
1 cup sorghum flour

Mix together, and add xanthan gum at a rate of 1/2 tsp per cup. I know. It's more than everyone else recommends. Live on the edge.

Another flour blend:
3 1/2 cups white rice flour (can sub one cup brown rice or sweet rice)
2/3 cup potato starch flour
1 1/2 cups tapioca flour
1/3 cup sorghum flour

I would also like to point out that because it seems to me the biggest problem my kids have with gluten is digesting it. That's why we have to give them digestive enzymes to help them break down their food. Which is why I don't use brown rice, it is more complex and harder to digest. It is completely counter to our culture, which is pro-whole grain right now. But, would you say we are a picture of health, or is it time to look at our foods in a more individualized way? I can eat complex carbs and feel great, whereas other members of my family wilt under the digestive stress it places on their body. Not to mention for children, using white rice makes their snacks and food look more like the processed junk that their friends are eating.

It sounds crazy. Feed your kids white rice and potatoes and pasta made from rice and potato chips. But for some of my kids, it is what works best for them right now.

Sometimes I will add half sweet rice and half white rice if I only have access to Bob's Red Mill white rice flour. Experiment for yourself what works best in your recipes. Mix up a huge batch and store in a glass container in your baking cabinet so you are always ready to mix up a batch of homemade pasta or pumpkin bread...yum!

So if you have your flour mix...you can spend your Sunday afternoon with the whole family explaining how to make and use an egg wash and differentiating between tortellini and ravioli (read: one we can make and the other resulted in near violence). All in all a fun and successful afternoon that lasted until evening ending with full bellies for everyone....even BRADY!

Chip it good.

2010-10-01T08:35:00.003-06:00

My son is a satirical humorist genius. He goes to a private Lutheran preschool. They love and adore him, but let's just say we don't go to services there (or anywhere, under religious preference on my facebook page I wrote "I like to sleep in on Sundays.")

I have not ever anguished over how my children would reconcile my view on (or overall lack of enthusiasm for) religion with that set forth in their private preschools. I don't look forward to the time of the year where near-babies are scarred with the image of a man nailed to the cross, but I compromise so that I can get a few minutes to myself each week. Yep, I'm that great of a mom.

I also let them know that they can let their own experiences and impressions inform their decisions about the universe and that nothing is forever. Each and every day I learn more and it changes what I believe and who I am. I have even learned to say "I was wrong about that." Not an easy thing for a person as loud and opinionated as myself.

My proudest recent moment was when, finally, one of my progeny inherited my very sick and satirical sense of humor. And the fact that it was my son, whom medical professionals have diagnosed with autism that predicates that he is incapable of such a sense of humor, is just icing on the cake.

He takes a highly ornate bright orange and turqoise Tostitos chip clip and clips it to his finger so that it takes on the shape of the cross. He comes up to me and with the hugest smile and brightest eyes, starts bopping and waving his finger up and down singing "Yes Jesus Loves Me."

I have never been more proud! SNL here we come....

So Brady is doing well. We call this riding the high. When things are going well, too well and you know that the catastrophic fall could be right around the corner. But for today, he is doing great. He has been moved up to the four year old room and is doing more than adjusting well, he is thriving. He is doing all the seat work, tracing letters, even counting quite well. We are using my iPhone to work on letter recognition as that is coming slower. He is exceeding everyone's expectations so far.

We took last weekend off round as Brady got sick again. So this week we are doing an ALA only round, leaving out the DMSA as it can be tougher on the immune system. On other big announcements, Brady is now tolerating Calcium supplements. A friend lent me her Yasko Cal/Mag supplement and he is doing well on it. The gaps are all falling into place. For today I can breathe a sigh of relief and focus on the other members of my family, on to do lists and getting us all on our vitamin regimens that we need to stay healthy this winter.

Study decisions

2010-09-19T15:48:00.003-06:00

Long story short is that we have decided to go ahead and enroll in the study. I am not entirely convinced that the research purposes are pure at heart. I have so little trust left in the medical establishment as a whole, but my hope is that maybe our story will impress upon one person enough to make the next family's journey easier.

I completed my intake interview this week and Brady has been accepted. I am not happy that he will have to endure being, in essence, re-evaluated. But, I think having two evaluations that will almost certainly ingrain on future professionals that somewhere there were two teams who diagnosed Brady so that when he falls off the spectrum, they can't say he was "misdiagnosed."

They will have to see him at face value, how far he has come, and as the director of Brady's preschool just said to me "that you basically have ignored everything they have said and he is doing this great." Yes he is. So great that he is being moved up to the 4-year-old room next week. At his request and agreed to by all the teachers, the director, and yes, even me. I'm willing to risk letting him fail to let him fly. The ultimate challenge of motherhood!

Today is the last day on round and Brady woke up with the sniffles. He also didn't take a nap this time and he is kind of a mess. Hopefully he will bounce right back after a good night's sleep tonight and only we are the ones who have to suffer his wrath. It is hard to see them fall back to move forwards, but isn't that the very nature of existence? The benefits are nothing short of extraordinary, even from his showing to being a normal naughty little boy!

The CDC? Really?

2010-09-12T23:15:00.004-06:00

Once upon a time I was a published researcher, on track for a Ph.D. and thinking I would spend my life finding psychological traits and behaviors statistically significant. Then I woke up in a life where my husband got into law school and I didn't get into a Ph.D. program and I was fine with that. I mean imagine my life now with an advanced degree that spent it's off time pissing on my reality. Forget about songs toasting douche bags. I would be royally fucked.

So this post isn't about lost dreams or demented should have been realities. It really isn't. It is about: should we participate in a CDC sponsored study (whom at this point I kind of consider an enemy) in addressing the true cause of a disease that an entire profession is making a living off of in my son's case, but that which I don't truly believe he has?

To catch you up on the 411, we got a letter from the hospital that diagnosed Brady with the A word on a study led by the CDC and being carried out in various cities across the country, ours being one of them. They CLAIM to be looking for the cause of autism, and to be the largest study of its kind. Hmmmmm....they will be looking at genes of course, and conducting their own developmental evaluation (which concerns me the most, esp. considering the bilingual materials boast that the evaluation comes at "no cost to you." Sweetie, nothing is at no cost in this world).

The kicker is that they will be doing a hair test, the only purpose of course is to look at metals that I know of. If parents like me ignore this kind of testing, will they be missing a huge population diagnosed with this poisoning they like to call autism. Or will I be subjecting my son to undue scrutiny? All when I am sure they will exclude our data due to chelation, but a part of me remembers recruiting subjects and how hard it was....

I will have to think about that one. A lot. In my spare time.

AND in the mail there was also information on a special needs soccer team. Brady really wants to play soccer especially after watching his sisters play. I know he is not ready to play on a team for his chronological age yet, so do I sign him up for that soccer league, or just make him wait?

Once again not embracing his diagnosis and it's convenient place in society creates joining conundrums of unsurpassed magnitude. Such amazing dilemmas to have!

On round again...

2010-09-10T08:14:00.003-06:00

It seems Thursday creeps sneakily back into my life like those ten pounds you swore you'd never gain back. We are on round and tired before we started. So it's 8 AM and Brady is asleep and I'm awake pumped on adrenaline from the lingering items on my to do list. The adrenal support is...not great. We are still figuring it out. So we are kind of where we were before with the "spit test" Dr., on our own instead, and not even in as bad of shape.

You know those nasty mom tasks that you would rather scrub toilets than do:

-Make dentist appointment with new dentist, who is a preferred provider on your plan, has privileges at the Children's Hospital, and doesn't push mercury and fluoride like the perfume lady at Macy's. Sensory friendly even? I know, too much to ask.

-Find a closer pediatrician. One who recognizes urgent situations enough to act, but doesn't overreact to every little thing. If that Dr. also didn't make you sign the "I know better than you because I went to medical school and you didn't- take this shot or get out" form even better, but it appears that even the only so-called alternative vaccine schedule practice in my town makes you sign that form. It might be a CYA paper, but it still pisses me off. As I've said before, they don't have to sign a paper after listening to me tell the potential and proven side effects of giving kids so many shots at a time. It is the Hep-B at birth that really pisses me off to this day that I don't know if I'll ever get over.

-Make an appointment to get to know my gynecologist again. It has been too long. Like I wasn't old enough for a mammogram last time I saw her and I think now I am supposed to get one. Or not. The f'in government can't figure that one out either.

-Schedule one last camping trip before it snows, skipping the least amount of soccer practices/games

-Finish "the talk" with the girls using the American Girl book that has way too graphic visual aids for me to stomach on so little sleep. I've got to do it as Elsa is on the express train to puberty and crazy hormonal outbursts over the smallest things. How will I manage twin girls clawing their way to womanhood? A friend suggested a book on the social problems happening at school "Queen Bees and Wannabes" so I should check that out from the library. See, something else I can do other than talk to my girls about hair down there, ewwww!

-Add some content to the bigtent site for Brady's OT gym. I have been meaning to upload recipes and now need to put up our list of trampoline games.

-Avoid becoming chair for the silent auction at Brady's preschool. I know I am going to have to help. I just really don't want to be in charge of another silent auction!

Those are just the things that are left on my to-do list. I've been jamming items out faster than a teenager plowing snow in a store parking lot before school. I'm getting things done over here. Organizing, cleaning, procrastinating. I know I have only gotten so much done to avoid doing the above tasks. I even ordered new therapy materials online for Brady's fine motor strength and handwriting practice. I've even made him do listening a few times this week (I have got to get back on the program after taking the summer off).

I will tell you a little story about why chelation is of the highest priority to me (and it will also explain why I am focusing on other areas of my life during my waking hours so as to not think about how hard it can be at times as we navigate these choppy waters). I have to chelate my son, because just this week I got a preview of what it would be like if he were 24, living in my house, and had too much to drink.

Brady was up in his room, light blaring, puzzles and books everywhere, refusing to go to sleep. The only thing missing was Led Zeppelin rockin it in the background. At 11PM he comes into our room and has pants on instead of the shorts he was put to bed in. His dad asks him where his shorts are and Brady says, "They're wet." Fantastic.

Brian takes Brady back to his room. I am sleeping at this point knowing this could be an all night experience with him and I need some sleep. Evidently Brian sees the wet shorts on the floor and asks if he peed his pants and Brady responds, "No I peed on the floor." I don't know how the two of them work it out that Brady is to go back to bed but at 1 AM he is still in there going strong.

The next day I drop Brady at school, and unbeknownst to me, I go upstairs to vacuum and clean. Brady had too much water to drink I guess because his wet shorts are still sitting on his carpet, next to a urine soaked circle of wet carpet, the room looks like a rock band tore it apart. There are books, games, toys dumped everywhere. The buckets and bookshelves are all bare and have been stripped of all their belongings. The carpet has devoured them like the urine my son couldn't manage to get into the toilet. And there are tattoos plastered on the fish tank, the walls, his bed, his table, dresser, everywhere. Not only did I have to clean all that up, but then he took a nap when he came home from school and I missed my kickboxing class!

So if someone asks me why I am chelating, well, I will just say because I don't want my son living with me forever, drinking too much, staying up late, pissing on the floor, getting tattoos everywhere, and napping during the day while I cook and clean for him. This boy is going to have to take care of me in my old age because he is pushing me there faster than anyone right now. I will leave out my husband who left the urine soaked clothes and carpet for now. I know he is doing his best and at least I got a little sleep since he got up with Brady!

Or am I really doing all this so that I can sleep someday?

A simple and easy update

2010-09-07T06:13:00.003-06:00

Well, Hi. Hello there. How have you been? Good? No? Well, thanks for not plastering a fake smile across your face and averting your eyes as you hurry past me then. I hate that. I guess that is why I felt it necessary to take leave from my blog for a while. I had been vacillating between plastering a fake smile or flat out complaining like a spoiled two year old and not doing anything about it.

I mean, what was this blog supposed to mean? Or do? For me, or the other two non-family members who read it?

I had been reading these books on happiness to see what all the fuss was about. It turns out that only blubbering idiots who can't shut up about how shitty their lives are write these diatribes. And no, not even in a funny way. Happy people, it seems, are too busy being happy to write about what it feels to not feel that way.

I know I needed a place to vent. But I had succumbed to bitching about something more than doing something about it. I don't want to do that anymore. There, I said it. I have made a lifetime, a persona even, founded on being a sarcastic complainer, but somehow dropped the "but still gets it done" part. And I just couldn't take it anymore. Everything I was, wasn't who I wanted to be. That just isn't unhappy. I don't think there is a book out there that can solve that problem. And just to be clear, it is my problem alone. Not one caused by others.

So, if I couldn't use my blog to complain, or rant (OK, I will never be able to stop that, or 100% not complain either), what could I write about? I have written about my infertility, about how it was the hardest thing I have ever gone through and really prepared me for a world that sucks. And is unfair. And that very little can be done about it. Oh, except throw thousands and thousands of dollars at the problem. That will usually result in the highest likelihood for a successful outcome. Along with surrounding yourself with Drs. who don't take insurance, but don't take no for an answer and friends who feel your deepest darkest pain and don't look down on you or pity you, just hold your hand and feed you an entire box of kleenex.

I have long since past been down the road of writing about having fraternal twin girls. I was the editor of my twins club newsletter for two years and no one wants to hear what it is like when you have pre-teen twin girls. The only thing worse is teen twin girls! The issues we have are more related to being sisters than twins at the moment, but I am sure that will all change. They make me proud for the women they are slowly becoming. As all children do, they make you humble in their presence and sickened by your despair to always protect them when you can't. I may write more about our public school troubles someday but the wound is too deep and fresh to expose to the air. This gash needs to stay bandaged and protected for a few weeks time to heal. If it can at all.

I am immensely proud of how strong Abby finished off her swim team season and made ironman to boot! She got in such great shape this summer. It almost motivates me to swim every day. Almost. And Elsa got Gator of the Year. This award is given to one member of the swim team (DUH, the Gators) for outstanding sportsmanship. One of her coaches told us it was his proudest moment as a coach to see her cheering on her competitors at the state meet. I think the tears in my eyes that I tried to hide said it all.

Proud, but conflicted as well. The awards banquet was outside the pool gates on the grass. We had already sat for about an hour as families poured through the buffet line and a stream of cookies, cake, ice cream and cupcakes sped past Abby and Brady who couldn't eat them at all. Neither could I because I was on a diet. Again.

The awards began and by the end when the Gator of the Year was announced, the girls were in the center front sitting with their teammates, Brian was back in his chair where we were eating, and I was all the way on the other side of the grass, patrolling the outskirts. I was both trying to listen and keep an eye on Brady at the park as he had become so loud and disruptive after being held hostage without the benefit of baked goods bribery like the other kids that I had to set him free.

We weren't able to enjoy the moment together as a family should. I can only reach for the hope that we were each able to enjoy that moment individually. Maybe that is all that I can hope for this blog. That moments I share can be enjoyed, individually, and make someone smile. I know other moms can benefit from hearing that my son has done better than any Dr. said he would. In our hearts, we who seek recovery for our children, can never see milestones regained or met fast enough.

What I want most of all, isn't for all parents to reject their child's diagnoses out of hand, or any therapies that they see fit. Even if that is what I have done. What I want to abolish is that there isn't a simple answer to solving these children's medical problems. I want there to be hope and a plan at each Drs. appointment and not a blanket statement, ever that claims "That is common in autistic patients" and dismiss them out of hand. This should raise the biggest red flag ever. Even when a mainstream pediatrician tells a new mom that it is normal for a two year old to eat only white foods, no one is calling bullshit.

I guess I want to call bullshit on almost everything that is happening to our kids in society today. I don't want to complain about it. I want to do something about it. And sitting idly by and blogging and not doing is not making me happy. I have to do something about it.

I thought I could tell my story, and while it is not one that I thought would be stuck in the middle chapters without a strong hero you can empathize with or an ending in sight, it would help others. Maybe even bring along a sceptical family member or friend or two to my side.

Instead, I have found more people who have come up against me than in my entire life. I was taken aback by how I let this bothered me. I guess that is how I know I am on to something. And that I have to leave those behind who want to weigh me down. And bring along those who want to go for a wild ride. It really has come down to that moment where you are either with me or against me. I feel that strongly about it because I have to in order to survive.

So if I am calling myself out on my bullshit and everyone else on their bullshit, what am I going to use this blog to do about it? I still think sharing my story is extremely important and a vital piece of who I truly am. I am not going to candy coat my experience at all, but I am going to try harder to share a more balanced perspective.

Brady is doing well. Not as great as his first few rounds of chelation, after which he caught a cold and his adrenal fatigue kicked in. I have him on some adrenal support that seems to be keeping the edge off. Not entirely back to normal, but not as challenging as last weekend's round. I give him his first dose of chelators (he is now on both DMSA and ALA) as soon as I pick him up from school on Thursday and dose every three hours in the day and two times in the night I get to go four hours between doses. This goes on all weekend until Sunday afternoon. He usually takes one nap on the weekend, both from being woke up to take "lemonade medicine" in the night, but also because it is hard on his body even at these extremely low doses. Plus if I don't take at least one nap I will have to try really hard not to kill someone. I can't imagine how a young child would manage some of the really high doses some kids are given.

I do know, for us, this seems to be the simple answer. That he will need everything he has been given so far to help him stay as even-keeled as possible during this several year process. But this is the only solution that even comes close to offering a full recovery. From yeast, b12 shots, therapies, and diets. Even if we had to keep some of those things to help him function at the highest level (as long as it eventually maintains the progress we have gained and doesn't falter) I would be pleased and feel like losing a little sleep would be worth it. I would be losing sleep over trying to figure out what to do next anyways if I weren't up chelating so it is all the same to me.

I am also not here to toss blame out to the masses or induce hysteria. I both envy those who know for sure what caused their child's delays, and feel sorry for them at the same time. Their pain and anger is so deep that sometimes I think they can't move past it. But I am thankful to them, for without their steadfast beliefs no one would have scoured the earth for a cure.

No matter how your child came to be in this deep dark place, there is a way out. I want people to know and understand this and I don't want to cloud that understanding with controversial debates about how our children ended up this way. They did, and millions more are out there and more join us each and every day. Even if you don't agree shots are a contributing factor, none of us can argue that we are a healthier society now than in the past. Or that giving kids 77 doses of vaccines has led to a stronger immune system and less delays, allergies, obese kids, or disorders.

There is an easy way. A simple solution. What we can't do is stop looking for it. We can't look outside ourselves for the answer. We have turned over our health to Drs. who have a bottom line to watch out for and have lost their way. We handed our responsibility for feeding our families to huge factory farms and fast food and can't believe what we got back was heart disease and thighs that chafe together with each step. Yep, absconding personal responsibility, it was easy wasn't it?

I am not sure where I will go from here. I have learned an awful lot the hard way in my 35 years on this earth. I don't know if I can prevent others from doing the same by sharing my story, or how the really hard truths I deal with every hour of every day have changed who I am and what I can live with at the end of the day. I have tried putting on a pretty face and pretending it doesn't bother me. I have tried to get away with shortcuts and the easy way and it didn't end so well for me. It is time to get to work and put in the hours needed to get the job done. I may not be happy about it, but that is what I have to do.

What I won't be doing is playing Where's Waldo for my sense of humor, because that part of me is intact, if misunderstood. We are living in uncertain times and I'll be damned if I'll be able to stop making fun of it to entertain myself and keep the mood light.

So, come along for the ride if you can! We'll see how easy and simple we can make it.

What stays and what goes?

2010-08-11T20:38:00.004-06:00

I can't believe that Thursday is here...again. I took the week off from doing a round last week. Waking every four hours in a trailer with my mom, dad, and three kids does not a vacation make. We had a great time at Mt. Rushmore and Brady literally RAN all the way from our campsite to the playground each night.

I never thought I would see the day that he would run anywhere of his own volition. I am continually shocked by the layers of my son hidden deep inside. So many things that we think are "just Brady" may in fact not be. To be only just discovering this at four years old is astonishing. Even more frightening are those parents who can't bring themselves to drive down biomed lane and may never meet their true child.

And then three nights in a row Brady has fallen asleep way before his usual 9 PM. I am reminded to speak my wishes more as I had just only earlier that first day mentioned how nice it would be if he would only go to sleep before 9 and still sleep through the night. Before even taking another breath, though, I retracted my wish and told myself to be happy for where he is today. I often get in trouble when I want more than I have and things that I already had fade away. Just by being aware of this seemed to stop that pattern, for now anyway.

Will it continue on round is the question. It all too new to say for sure. The thing that continues to improve is his eating. On his bike ride tonight I noticed he is actually getting a little meat on his bones, finally!

We are all getting anxious for school to start and to fall into a routine. That first week I plan to rest and clean the craft closet. That to do list you can't seem to get to with kids to play with and all that darn laundry. Soon the only thing to tend to in the garden will be the pumpkins! We have been eating garden to table every night and what a spectactular bounty we are enjoying. I am already looking forward to the planting next year. I want to clear even more space since we will be trapped in town with swim team again.

We have had a full and successful summer and I can almost feel fall scratching at my back. Long pants and sweaters and yellow leaves and earlier sunsets. It is my favorite season....mostly because it consists of the only days that my husband says I like. Days where the degree starts and ends at 74.5 degrees (by the way if anyone knows of a thermostat that allows you to set half degrees, let me know!)

Moving past and beyond

2010-08-10T22:13:00.004-06:00

So I took my kids to Tiny Town today and I couldn't help thinking if this would be the last year we would be going there. It consists of a bunch of miniature house replicas of your small towns...beauty shop, auto repair, library, etc. There is also a train that loops around. It is for the preschool set and their older siblings that have to be dragged along. There are lots of toddlers and pregnant skinny moms with hope and glee plastered on their faces. I purse my lips almost every moment we are there.

I can't help but remember that this is the place Brady learned the word "door" as we made him repeat it for each of the hundred or so structures there. That is a day I will never forget. Back in the EI days. (Which I also can't help but think about as we just got an independent survey on their services).

I remember being excited that I could teach him after lots of pre-work and that many repetitions, but also perplexed that it would take so many when I knew what a bright child he was.

After all that I have learned about having a child with a modern day A-word diagnosis, well, we are one of the fortunate ones. I count my luck stars every day. He talks, in fact you just can't shut him up even when you want a break. Just as we were on our way home from a good old fashioned tantrum (age appropriate I might add over not being able to buy anything in the gift shop), Brady inquires of his sister Abby "Will you miss while I am gone?" My heart skips more than a few beats as I wait for his sister to ask where he is going. He says verbatim, "I am leaving for grandma and grandpa's house. Will you miss me while I am gone?"

I almost teared up but I was tired from the tantrum and getting everyone out of the house that morning and with to do lists spinning in my head, but as I reflected on it, well, I felt lucky and amazed at how he sometimes surpasses all that I could've ever expected for him, or let those bastards believe and verbalize of my child's abilities.

Lest we forget to believe in the impossible, it can and does happen. But I don't think it happens on it's own. We have to fight and scratch our way to victory, and well if we get burned in the process, I'm OK with that too. I have lost most friends, family, respect from society as a whole at this point. I have had to dedicate my whole being and family, and I know they will all be waiting on the other side. I would like to claim a bit of sense of self soon, but my full time job is healing my son and raising my girls and, as they say, you'll sleep when you're dead.

UM. Yeah.

2010-08-06T22:31:00.003-06:00

And there you were side by side. Separated for nearly a week from one another. The house smelling as stale as if the petsitter had only stopped by. The dishwasher not run once, as often as the forgotten pet fish was. A vacation with the grandparents, grown daughter and mother to three. Too many cooks in the kitchen, and none at home apparently. He must have been at work all the time.

I've skipped a round because my mother says I need sleep as I set the tone and am therefore responsible for the insanity of six travelling in a trailer to several states with less than 24 hours notice. Sure. I can totally operate this way. Wonderful memories these will be someday. Does marriage become a great memory or made up story?

I miss writing every day. I guess more than sleeping in my own bed rather than a makeshift dinette table no matter how large and "comfortable". I know. Some have less than I. I should be grateful to have a home to arrive at after dinnertime and have a great husband prepared to order take out. I'll try not to obsess over the ice cream sandwich I've let myself indulge in this last week to regulate my own serotonin levels.

But. brady's DAN! has been on vacation for 2 weeks and he needs a refill on his diflucan, despite having asked for a call in last month as his ketaconazole needed a refill at the same time. His compounding pharmacy already called the on-call Dr. to get his nystatin refilled last week God love 'em (well at $47 a month, they better get off their ass and do something).

Interestingly enough grandpa gave Brady his B12 shot while he was awake during this trip (we all knew we would pass out long before him) and while he said it poked him and requested a band aid after like in the old days when we used the numbing cream, he did quite well (aside from trying to give his sister a "shot" in the car on the way home.) He used to do this before, and quite frankly she deserved it. A real shot I mean.

Probably 8 loads of laundry to go and a good thorough scrubbing in the trailer and there might be a date night at the end of the day tomorrow. Even if the DVR only has 16% left.

I have got to get up early and run to the devil store with the girls to get school supplies. They have registration next week, testing days on the 20th, start the 23rd and Brian tells me they have the day off the 24th. What. a. load. of. crap. Or as Brady said seriously as his sister tried to eat his Cracker Jack, "NO. WAY". He's serious and so am I.

Back on round next week. Ironically without any cell reception for a week, 248 emails and constant calendar reminders of bullshit tasks I assigned myself such as "clean craft closet" and missed playdates, I am glad I went on this adventure/separation and know only good things will come of all of it. Nothing will be more clean, except maybe my mind.

Round and round....

2010-07-24T21:18:00.003-06:00

Abby watches this music video almost every day. Round and Round by Selena Gomez. She watches it so much that even Brady can sing the words. Not only are we "on round" again, life seems to be constantly going round and round. On round means we are chelating for 3 days "on" and then you go off round and you are 4 days "off".

Brady is back to normal from his surgery, had a clear post op appointment and lots of metals to chelate in his urine so away we go. We will be checking liver and kidney function every three months just to be hyper vigilant. His DAN! also wants to do urine tests every 3 months but I think I will have to pass. The method we have chosen doesn't actually require a Dr's prescription, but it is handy for all the yeast that comes up and the viruses that will inevitably have to be dealt with in a year.

The reason for all the round and round talk is Brady had his 4-year physical to get his school forms signed at his traditional pediatrician's office. It was all in all a horrific experience. I know Brady is doing great. Ever so often he will just act off, but for the first time I saw him doing it on purpose (well at least I could prove it was on purpose this time). She would ask him what foods he liked and he said "squid and shark and stingray". Now, I know he can tell you foods and what he eats, and most importantly, what he doesn't want to eat and he was totally messing with her to see if he could get away with it.

I knew he would be obstinant so I took him to the toy store and let him pick out whatever he wanted. He got the Sodor suspension bridge he has been eyeing in his catalog for a while now. I told him he couldn't have it unless he:

1. Stepped on the scale. Usually he refuses and I have to weigh myself holding him, then weigh myself not holding him. So I have to get weighed and do math on the same day. Drives you straight home for a drink. He doesn't do this at any other Dr.

2. Answered every single question.

He did step on the scale. Then he spent the rest of the appointment sticking his tongue out in the mirror where his teeth used to be and making faces. He was being such an obstinant little shit. I don't know why I let this bother me, except we have worked so hard for him to look like everyone else and he does 99.9% of the time, and then he chooses the times he is getting evaluated to clam up. After serious threatening and cajoling I got him to tell her that he had hamburgers for lunch.

The only area he showed real delays on his developmental questionnaire was his fine motor. He doesn't copy shapes, etc. so that is something we can get him to work on. This is an example of something our crappy public school should be teaching him! Just like everything else either we'll teach him, or his grandma, or we'll end up paying the private OT to do.

I became "that" parent this week as well. I had to sign this special form confirming that I was refusing to vaccinate. I had always stated in the past that I had not made up my mind. I had to listen to her tell me why I should vaccinate. The form also listed the number of vaccinations recommended and that number was 6. If I had any inclination to go ahead, that would have scared me off as it were! Some were from shortages when he was a baby, some were new vaccines (yeah, kind of like buying a new model of vehicle!), and two others were shots that she told me they couldn't give after the age of 5 (Why? I'm thinking because they wouldn't provide any immunity as if there was something magical about the age of 4?) She didn't have to stand there and listen to me tell her why I couldn't vaccinate in good conscience and sign a form that says her office confirms that they stand behind the policy of the hospital NICU who vaccinated my son on oxygen, not knowing if he were septic or not, for a sexually transmitted disease that he had not been exposed to because they can't get the target population to comply with the vaccine once they reach adulthood.

As soon as we walked out of the examination room Brady would not stop talking. I tried not to get upset but deep down we all have those days when we can't be as strong as we need to be, where we let what other people think shame us. All the questions about how the number of hours of each type of therapy and service which he is not getting were asked and answered almost nothing.

It made me feel guilty when it shouldn't. I don't owe an explanation or answer to anyone but myself and Brady when he grows up. I want to be able to look him in the face and tell him lovingly that I respected him as a person and did what I thought was best to the fullest extent I was able. That included spending my thirties on my ass in front of a computer or a nose in a book doing research, or waking up every four hours in the night to give you a chelating agent. I did what I thought was best. That is all I want for any of my kids to know about me and to do with their own lives.

I think my next round will include finding a biomed friendly dentist AND pediatrician!

DAN! update

2010-07-21T09:10:00.003-06:00

We got the results from Brady's urine metal challenge test. His cadmium is 3 times the allowable limit and his tin is double. This was from his pre test which indicates that:
1) I can blame China for even more of my problems
2) His body is actually beginning to detoxify on its own, somewhat
3) We will need to install a reverse osmosis water filtration system after all

What it doesn't change is the who, what, when, where and why we will be chelating. He is back to eating and drinking and all that good stuff at normal levels so we are set to start round two this week. I am going to begin on a school year schedule to get into a solid routine before he even starts school. That means his first dose will be when I pick him up at noon on Thursday and run through Monday morning just before I drop him off. It should make for an interesting double swim meet this weekend.

Abby is at her grandma's and we have been missing her terribly. While we seem to get everywhere a few minutes earlier without her morning drama, we are all having to work that much harder without her to get there. Brady is very upset by her absence. She is like his second mom. He keeps coming through the sliding glass door trailing rice and beans from his newly restored table asking "Is Abby back yet?" We were leaving the aquarium yesterday and he asked "why didn't Abby come?" Time and memory are still not his strong points, well unless it is something he REALLY wants!

On a personal front, the smoothie every morning resolution has been successful thus far. Taking my friend's recipe of blueberries, ice, and spinach and adding two scoops of flax meal has helped me to stop skipping breakfast and then eating a larger than needed lunch. Salads every day for lunch are filling me up. Dinner and nighttime are still a struggle to eat healthy. I will get there though. My next step is to get everyone on a daily multivitamin and fish oils by the time school starts. I will also get Abby on digestive enzymes and probiotics once she gets back. Our resolution to health and energy remains on track for the time being.

As has my intention to get us out of the house on a fun and exciting adventure everyday so that we don't just do housework all the time. Brady has his post-op dental appointment today and then we are going to a splash park with some friends. Tomorrow he has his annual check up just to get school forms signed, really. Friday will probably be a pool day with friends. Each day will just go by if you don't plan ahead for what you want to accomplish. The hardest part is letting go of that which manages to say unfinished (like the four books cracked but laid open, to do lists, organizational projects, unfilled writing notebooks).

From a sense of chaos and disillusionment comes the greatest of gifts. Self awareness, security, and strength. Someday it will all fall into place. I don't want to miss the good stuff along the way because I cared about how dirty my floors were more than playing croquet in the backyard with my family.

One of everything

2010-07-19T08:06:00.002-06:00

As I was changing into my workout underwear I wondered: why can't there just be one type that works for all occasions? One pair of underwear for sweats, low riding crops, tight fitting skirts. Why do we have to change our underwear, our verbage, our mood, the expression on our faces to suit each occassion? No wonder I am so exhausted, I can't even find a pair of undies that don't make me frown!

I have been focusing on getting everyone healthier and having more energy to get out and do things that don't involve screen time. I understand the irony of typing this on a computer, but I'm not saying we are eliminating tv or computers altogether (although it would be easier in the long run). The burgeoning crops in the garden beckon to us to pay attention to more than their watering and weeding needs. Squash eating contest anyone? How far we have come from tilling our own soil to shopping in a supermarket.

I have learned a lot during my grow your own food experiment:

1. I would have to turn my entire back yard into a plot to feed this hungry lot
2 I am even lazier than I had feared
3. Corn ears don't grow at the top of the stalk
4. I would rather do almost anything than weed
5. Feeding your family food that you grew with your own two hands produces a contagious smile.

But all of these revelations about myself has led to me remember a lesson from the beginning of this journey with Brady. None of us is being physically active enough. We aren't connected to the source of our food. We have to make a rigorous effort to change these two things to build a solid foundation. One step at a time, one change at a time, one pair of underwear at a time.

Reconstructed mobile blogger

2010-07-16T08:37:00.004-06:00

In the waiting room. Two hours and counting. "I hear there is some history of autism." I am not kidding the nurse said that. This is funny to me because we took a stroll across the street to the very building where they might take issue with the words "some" and "history". I want to stop the families on their way to an unavoidable fate, shake them til they pass out so they can't go in.

I must have had to repeat the name, number, type, dosage, frequency and timing of every med and supplement four times. Then the questions about the diet. "is it just because kids with aspergers sometimes do better off those foods?" No. "does he have celiacs?" No. He has gluten intolerance. "well what happens if he has gluten?" He can't have even the tiniest amount. He gets explosive diarrhea. His behavior gets how can I say, crazy?! Ok then.

My SIL gave me the word I was looking for: clusterfuckstration

The truth is we are very Lucky to have such a nice childrens hospital. Everyone has been great with Brady albeit some more understanding than others of our approaches and choices (esp. not telling him why we were going here). The anesthesiologist gave him a mask to practice with before taking him back, even telling him it was his space mask and then moving the bed up and down in the operating room like it was a spaceship. He handled the entire experience even better than I could have ever hoped!

It's just a week.

2010-07-16T08:13:00.004-06:00

It has been one week since Brady's dental surgery. One week since my mobile blogger upload didn't post which I only just discovered today. One week since the nurse sat me down before discharging Brady and asked me "who diagnosed Brady?" "Was it his pediatrician?" One week since the nurse told me she sees thousands of kids and there is not one nurse on the floor who thinks Brady has autism. One week of ibuprofen dosing and pain and not eating well and not being able to dose charcoal to keep his yeast under control and not sleeping through the night.

And then. Poof. It is all over.

The fish oils, or lack thereof, was successfully mediated by grandma's visit and constant interaction. Every time she comes she shines the light on the path we should be taking with our son. And when she leaves darkness falls once again. We try to hold on to a penlight's worth of her energy and knowledge and driving force, and we usually do for a while and then our batteries start to die and so do we. It is why parents resort to enrolling in 40 hours of therapy a week because it is the hardest job to be both a parent and a therapist at the same time.

We are lucky that we don't have to juggle these roles as much anymore. We still need to, and, yes, we all wish we didn't have to. Suck it up as they say. You can always do better. Or try harder. I don't know how much you can change by doing things this way, but you can't quit trying.

We now have a toothless little boy who still loves to smile big, doesn't believe in the tooth fairy, and is desperate to play with the other little boys at the pool, park, or anywhere else we take him. He is the closest he has ever been to fitting in. He has the desire and drive, and the skills will come that allow him to do just that. I am as hopeful as ever that he will recover. How he gets there is less important than the actually getting there.

I will try to recover my mobile post from the day of the surgery. I have no idea how other bloggers post so prolifically or profoundly, or so polished. My half-assed attempts seem to barely break the sound barrier of technology. Are they getting paid? Procrastinating? I don't know, but I will once again attempt to do better. Oh and post a picture of Brady's corn. It is huge!

Fish oils and insurance

2010-07-07T07:09:00.005-06:00

For the next three days I will be without my lifeblood (well OK my son's): my beloved fish oils. Just in case you weren't aware, fish oil consumption increases your bleeding risk so you should always inform your Dr. if you have an accident, or in our case stop taking them for a few days before surgery. Dental surgery, for sure, is not as serious as a gastric bypass, but there are always risks of bleeding and of course with general anesthesia. I have had a pit in my stomach that has transformed into a crater from the largest meteor to ever hit earth. I am scared, anxious, feeling like a failure and just wanting this time to pass now that it has come. To the point that I can barely handle being in my skin. Dealing with Brady off of fish oils will not make this time pass any easier.

Also not making this time easier is dealing with the business office at the dentist and the dental insurance we acquired to help cover the cost of the surgery and any additional issues they discover after he is put under. I really can't rant about how convoluted the decision to move forward with surgery has been, let alone the cost involved. I will say that I have reached the end of the rope dealing with insurance companies and lying employees masquerading as benefit coordinators in the medical profession. I can also say that the insurance industry is so morally bankrupt and financially strident such that it is honestly cheaper to pay for all your medical care out of pocket rather than pay their ridiculous premiums with puny coverage.

What word is the cussing equivalent to clusterfuck for frustration? Clusterfrustrated? I need to invent one because frustration doesn't begin to measure the depth of anger and despair I feel when I start looking at how to pay for all the medically necessary treatments for my son.

Reach across and hold my hand, wipe my tears with the back of your hand, and squeeze me tight because the next few days will be tough. To be knocked to the core and not be able to stand solid is unnerving at best. The fact that Brady's surgery will be at the very hospital where the "A word" got stamped in his file is not helping a bit.

We just got back from a long camping weekend. As Brady held my hand during a hike on the lake loop, he said "I'm happy." To which I replied "I am so glad you are happy, it makes me feel good." He then goes on to say "I like my new class. It wasn't my idea at all. But it's good. It makes me happy."

None of this was my idea. But it will be good. And we will be so happy when it is all done and taken care of.

The orange jug experiment

2010-06-30T21:45:00.003-06:00

It would be too easy for me to say what a great name for a band this would be.

Instead I will share with you that I am hooked. I will look crazy in the face of sanity and spit I am that excited. We haven't had a wow this big in a very long time. We have experienced sustained progress in a way, barricaded by downward dogs of doom that would light any one's hamstrings on fire. I don't care how much more in shape you are than me. So we haven't been able to compare and contrast failure with complete success in a long, long while. This is great news.

But this, this is something so special and so different I can really see why so many try to get you to drink the kool aid. I won't try to get you to drink it, I really won't (even though growing up I made it so much I didn't need to read the recipe). I just want to share how excited I am about c h e l a t i o n and how I hope it continues to unbury the succulent child within. The shrimp in the bacon wrapped shrimp if you will (OK, I might still be starving after the swim meet this afternoon, so sorry about that).

I am walking by Brady's room after a night at the pool during which his dad got him to kick across the pool in his tube...YEAH! Brady says to me as I am dripping wet in my new favorite swim shorts, "Come visit with me" as he pats his new Lightning McQueen bed. He is all snuggled under the covers. I tell him I need to change into dry clothes so that I don't get his new bed wet and he says, "hurry back." No fights, no arguments, no visits from middle name Mr. Semantics. I have never heard him ask someone to visit with him. We have a great snuggle and talk.

A few days later we pick up his buddy to drive him to his social skills class at the OT gym (yeah, I know, leave me alone). Brady spontaneously tells him he has a new bed and his little friend asks him what kind of bed and they proceed to have the kind of conversation that gives a mom of a kid catapulted on the spectrum goosebumps. I gave his mom goosebumps today as I retold the story of our glorious car journey. It was an awesome milestone.

I am so proud of him, and why I think chelation is different is that you keep upping doses and adding layers, and you can do all of this without a Dr. if you so choose. As of right now I have been waiting two days to refill a prescription and my Dr. is not calling the pharmacy. What crap!

All I can say is that no matter what the results of the orange jug tell us, I am locked and loaded to go low and slow for years if that is what it takes. Knowing that I can focus on his chelation during each weekend allows me to give the girls what they need, and this summer it has been a lot. Elsa learned and taught a lesson at her invitational swim meet and just today Abby cut 5 seconds off her time for her 25 breaststroke. I just love being able to give to each of them and maybe, just maybe get myself and my marriage in there as well?!

I think all of it was aided by Brady's friend's mom who gave us a great recipe:

Chopped spinach in the blender or food processor
Add a cup and a half of ice
Layer twice as many blueberries as spinach.
Puree and enjoy, YUMMY! Please choose organic if you are able, it makes a difference.

p.s. It is just late enough that I find it h i l a r i o u s that blogger spellcheck doesn't recognize chelation.

You had me at "recovered"

2010-06-26T07:48:00.003-06:00

I'm chelating my child. This statement will make some people's skin crawl and they won't be able to read one more sentence. Others will be morbidly fascinated. I am kind of in the middle. Believe me, no one wanted to avoid being here more than me. The last thing I wanted to do was to reach what seemed like a drastic last step. But why? By whom? If you read the parent ratings for biomedical interventions , you would find out that chelation has been identified as the most effective intervention.

More effective than the GFCF diet. More than b12 shots. More than antifungals or fish oils.

As I said, I wanted my child to be healed long before now. The longer you do this, the deeper in you go. The more it seems you are willing to "risk to recover." The truth is, though, that you are only risking something by not trying it. Brady is under a Dr's care. I have read and researched, studied and prepared to support his body during this process. I have only read of children recovering after chelation. That should have been all that I needed to proceed. I was ready long ago.

But as members of society, we end up caring what others think and it can inhibit our ability to trust in ourselves to make the right decision. I know I made the right decision to move forward. My decision is that I want, like all parents want, the very best for my child and recovery it seems is the best option out there for him. And the road to recovery in his case requires chelation. I know that everything we have done to date prepared us for this moment, and will help lead us farther down the road to any and all next steps required.

You can't believe all the great things I am seeing!

The thing that is first and foremost is the sequential language..."I found this money and when it gets sunny you can take me to the pool and I can get food because I am so hungry and I love food."

Second is his memory. Brady says to me "What ever happened to Lucy?
She just disappeared." (Don't worry she is in a good home with dear friends of
ours and we babysit her and she has a better life than at our house.) He asked
about her maybe once when she first left, then nothing for many, many months. He is talking about many, many things that happened a while ago.

Third, his energy is up, up, up! My son is slow to engage, shall we say? He is
smart, but a slug at times. I love him to pieces, but his pace, he is killing my
to do list. Now he seems just "on it."

Fourth is his need to do "everything myself" just like a NT two year old. It
is both amazing and time constraining, but I am dealing with it all and excited.
Don't I sound excited?

Yes, getting up in the night isn't great, but because the days are easier to
deal with I can handle it. Nothing in the night could be harder than feeding
screaming twin babies.

I am loving all that I am seeing. It is that high you get when something is
working, and we have done an awful lot. And since I wrote about "lasts", I hope this is the last time I have to bring large visual reminders that my children urinate. First it was dragging two portable potties in a wagon when the girls were potty training. Now I have to take this gargantuan orange jug to the swim meet and collect Brady's urine for 24 hours. Do I love these kids or what?

What do we want? Recovery! When do we want it? Now! (See. Being a cheerleader in high school taught me some serious life skills beyond fending off football players. Oh who are we kidding?!?! Hey, you. Quit judging me over there. ALL the cute boys in my high school played sports. We had a hundred people in our class. If you didn't play sports, you better cheer, and if you didn't cheer you better drive. See how I ended up wearing bloomers and freezing my ass off?)

The last time

2010-06-26T07:17:00.004-06:00

I don't often recycle something I have written, but sometimes you bleed something onto paper rather than use a pen to write it. The words define who you are and why you do things the way you do, without even knowing you had an approach or philosophy to begin with.

There is something magically freeing about the last time you do something that resonates with me. We have reached another one of those moments: no more crib mattress or sheets or mattress pads. I am going to have a bonfire! Brady has been in his firetruck toddler bed f o r e v e r. I had been trying to get him to take Abby's junior loft bed, then let him pick out his own bed. Finally I trolled craigslist and found the best bed I could for him, hired a babysitter, took everything out of my car and went and got it without asking him. Naturally, he wanted a Thomas bed instead.

Are you reading Little Tykes company, purveyor of all things plastic? Make a twin size Thomas the Tank Engine bed so that no mom has to go through all that I have to get their son in a bed where he isn't folded like a letter in an envelope to catch a few winks (and you know I mean just a few, don't ya!

I want to share some of an essay I wrote on The Last Time:

When my twins were born, I got all the usual advice. Everyone told me how fast it would go, and to treasure every moment. I lost most of those moments in the constant breastfeeding and pumping, dishwashing and diaper changing.

I don’t remember what my daughters' first words were. I didn’t methodically record every milestone in a baby book. What I did was try to laugh with my children every day, which wasn’t always easy. That is the only thing I wish I had done more. I would’ve left dishes sit and not agonize over quitting breastfeeding or anything else I made into a monumental decision.

Most of all I know that while I may not remember the firsts of childhood, I will never forget the last times. I will chronicle my child’s progress by the last time I see them lay on the floor before they get up and crawl. The last time they take a drink from a bottle or ask for their binky. The last time their fingers curl around the rail in their crib. The last time they reach for your hand to cross the street.

A few more lasts to add to that list that I am sure to never forget: the last time I take a wagon to the zoo, the last time my son needs therapy or a vitamin or a special diet, the last time the first person my girls want to tell about their day is me. We are so lucky to have such wondruous lasts behind us, most importantly the last time you buy diapers (I would like to still have wipes though!)

Go Elsa!

2010-06-25T18:08:00.001-06:00

YOU CAN DO IT!

I am both proud of you and happy that your meet doesn't start until noon tomorrow!

Inner drive and talent

2010-06-24T09:09:00.004-06:00

I don't know how many people watch America's Got Talent, but I have to share this clip with you about a boy with epilepsy. His mom states that "Connor has been told he can't do things and everytime he tells me he can."

The beauty and simplicity of his indoor kite flying brought me to tears. We can never forget that we have to fight to prove that our kids CAN do things doctors or people say they cannot. Until that day when they tell us "I can do it myself" to the day they say "I can do it" when others say they cannot. This is not something you can teach. You can't reward a behavior that isn't already present.

From the very beginning of his life, when he was just a thought in my head, my son had clawed and climbed his way into this world (as the bruises on his newborn body prove). Any and all therapists and Drs. who have ever met him say first, how cute he is, and second, how hard he works. Early Intervention wouldn't give me materials, or enough hours to work with Brady because they said no 18 month old would work that hard or for that long to learn something. He did and I did. For two hours a day for a year he slowly learned how to learn to talk. We worked together, but he certainly had the hardest part job. I can still hardly believe I have to tell him to shut up sometimes.

I can only understand a fraction of the determination it took over time for him to put his hands in shaving cream that must've looked like hydrochloric acid to his eyes. Or let the rice and beans fall on his legs that appeared the size of boulders and logs that could crush cars and take out buildings. There is not one thing that has come easy for him, and that is only counting the things I can see from the inside.

I was downloading pictures from swim team for the girls and saw picture after picture of what looked like an extremely ill child, scattered among shots of the most beautifully charismatic smiling boy you will ever meet. I don't know what it feels like on the inside to feel great one minute and be near death the next.

I do know what drive and determination he must manifest to overcome it. It is the energy that makes it possible to fly kites inside without any wind. Not just to achieve this feat, but to dream it in the first place.