Thursday, August 28, 2008

Back in Business

Dear Teachers,
When I sat down to write to you a little about the Rooster in preparation for the coming school year, I realized it might seem a little lame to you at first, as you already know him and have worked with him. But then I realized just how much I have learned about him just in the last couple of months, as well as how much he is changing, and I hoped maybe you'd find reading this helpful. Or, maybe really I just needed to write it for my own self, my own way of facing the transition to another school year with my little guy.

While I admit I had moments in the beginning when I doubted the diagnosis of autism, I don't anymore. (Believe me, I always knew we had issues! I just wasn't sure the right name for them.) I don't think I understood all the faces that autism can have. In fact, now that I've read countless books, articles, web sites, blogs, I still don't see that many autistic kids who seem to match my boy, but I also understand the concept of a spectrum much better than I used to. You can have 30 kids with ASD in a room, and they can all be different from one another. Spectrums and continuums have a lot in common, which is to say that they have infinite variations.

What does autism mean for the rooster? Language delays, and pragmatic weakness. Disregulated behavior.
Sensory challenges.
Digestive Problems.
Health Issues.

We had him on some medicine that seemed to help a lot. Great, right? Well, no. You see the medicine had side effects. Those side effects had the potential to seriously impact the rest of his life. We knew the chances of side effects were slim, but once we saw that our boy began to show signs of them, we knew we could no longer take any chances. He is no longer on the medicine. Yes, that makes him harder to work with. And that makes me sad. However, I have to think that having been on the medication allowed him to show what he is capable of, and somehow we have to access that stronger, happier, better adjusted boy through other creative means. It is not easy.

There is no one I have more faith in than all of you. There is no one I have more gratitude for than you. I know we are on a team to help the rooster overcome autism, and so I want to help in any way I can.

Language delays, and pragmatic weakness mean that the rooster might have a plentiful vocabulary, but putting words together is so hard for him that he often makes up his own words (jargon, like "eeling" or "floppydodah" or "durst"), or he "scripts" from books or television. He tells stories that sometimes seem plausible but are entirely made up, cobbled together from a cartoon he saw, a story he heard on the radio, and the book he heard at bedtime. I don't know how many times people come up to me and say, "Hey, I heard all about how you...." They think we went to Disneyland, spilled ice cream all over the kitchen floor, got a new dog, and none of that happened, except on Nickelodeon and in Fancy Nancy and in our boy's imagination. That is the cute part of his language issues. Of course, you've seen the uglier parts. He doesn't always know what people are asking of him, and he pretends like he does, and then his temper rages. Or he feels a frustration he can't articulate so he screams, pushes, or shoves. Or he wants to play with someone and can't figure out how to ask, so he gets in their face. This is not an act of aggression as much as it is his compensation for deficits, language deficits and social deficits. Lately we've been trying to give him "do overs" -- if he screams, "Get away!" to his sister, I will say, "What you meant to say is, "Please don't touch my Legos, I'm still using them. Then I know your sister will say, 'Okay, I will play when you finish.'" Sounds obvious, but I admit it shocked me how well he took to this strategy, and how well it was received by his sister.

Disregulated behavior. Well, doesn't that just sound overly euphemistic?! I know, sometimes I just feel like screaming at his bad behavior. It scares me sometimes and angers me frequently. But I have to keep remembering that the experts in the field all tell me that his behavior is a way of telling me how he is struggling, and that the best strategy is to prevent situations that rile him up rather than trying to put out fires. We put up a rope swing in our yard and bought him a sit-and-spin, and getting him to do this helps with his behavior at home, but nothing works all the time or one hundred percent. I also have learned that autism cannot be cured with discipline. Time out means nothing to him, though we use them to give us a minute to cope!

Sensory challenges. The rooster never saw without double vision until last year, plus he was born with low muscle tone, and these things clearly have contributed some sensory problems. He also cannot gauge pressure. He hugs too hard, holds crayons too tightly, etc. He used to scream if anyone touched his head, but that stopped when he had eye surgery. He really seeks pressure, loves the sensation of spinning, and craves being in water. Sometimes when he seems aggressive, it turns out one factor has to do with these sensory issues. Sometimes it's a complete mystery to me, but a mystery I hope some day to unlock if I am patient.

Digestive Problems. Now, I don't want to give you too much information here and gross you out, but the rooster has never digested well. Turns out that this is a huge commonality among kids on the spectrum. Dietary interventions make a substantial difference. This is NOT the only reason we do dietary interventions -- we do it because he is SO ALLERGIC and we see a cognitive benefit from the diet, but more on that after this digestive issue. I want you to know that for a period of many months we wrote down every single thing our boy ate, how his health and digestion were, and how his language and behavior seemed. This was tedious, but worth it. Turns out that when he's not digesting well, his behavior worsens. Makes sense, of course, but still helped me understand him better. We are so grateful for your support adhering to his diet.

Health issues. This little guy saw so many doctors and specialists, had so many prescriptions, suffered so many infections, that we felt that he needed to go live in a bubble. My journal indicated he got an infection before he was six months old, as well as exhibited allergy symptoms, and about two and a half years later still seemed like neither had never gone away, only worsened. Two surgeries, several blood tests, three allergy panels, 11 doctors, and endless allergy-proofing later, we decided on our own to try that wacky diet business we'd heard about and poo-pooed because there was nothing left to try. Guess what? He has not had a SINGLE infection since the day we started, SIXTH MONTHS AGO. I have to eat my Jenny-McCarthy-bashing words; diet is amazing. Sixth months without an infection feels to us like a miracle. Again, though, nothing is perfect; even with vast improvement, I would never call him the picture of health or anything.

So what is this diet all about? It's about keeping our son breathing and thinking, and it's hard work, but well worth it. He is on a gfcfsf diet. It's free of gluten, casein, and soy. That means he can't eat pretty much anything you buy in the ordinary grocery store except for raw fruits and vegetables, juices free of artificial ingredients, steamed rice, and certain meats. We avoid everything artificial and buy as much organic as we can get. We will send in everything he needs to eat, and he's usually pretty happy with his choices, as he adores sweet fruit and crunchy organic veggie snacks. He's a good, healthy eater. Yes, it's hard when he sees a cupcake with sprinkles he can't have. But we are ready to do what it takes to get him specialty treats when he needs them. He can have popsicles that have all natural ingredients, and those usually win a smile from him. How I wish they -- or anything -- provided a good bribe for my boy, something that would encourage him to do any of the trillion things he refuses (brushing teeth, potty training, changing diapers, cleaning up, taking medicine, sharing, etc), but so far I have found him entirely unfazed by carrot or stick; what drives him is, I think, far more chemical or neurological or just plain hard wired than it is rational enough for bribes or threats.

He is a complicated little guy. He has been since the day we met him. Even then, he didn't want to cooperate, born late and requiring a vacuum assist 32 hours into labor, stuck because he had his small fist raised to his face as he howled his way into the world, and within hours in the nursery the nurses asked us to take him in our room as he kept waking all the other babies. But he also loves fiercely, and he loves his school, loves his teachers, loves being a part of his community. He can't always tell you himself, but I can. We all walk around the house singing the planets song, we all enjoy seeing the handmade treasures from your class around our house, we all value your wisdom and your kindness, we all start this school year with thanks, respect and warmth, along with our anxiety.

I don't know if this letter helped you at all, but I know I feel better. Happy Fall.

1 comment:

Niksmom said...

Wow. That was a beautiful and detailed picture you painted of Rooster! I hope it helps at school.

Been thinking of you guys a lot lately and wondering how things are going. xoxo