Tuesday, October 20, 2009

First Post (I really need to start this!)

I have an autistic nephew, Adam. He's 8, a sweet, happy, goofy kid, largely healthy these days now that we're a year into some aspects of his treatment. I've been saying for a year I'd start a blog just to make some notes of his progress/struggles and hopefully to help the myriad of others who seem to also be on a similar journey.

His diagnosis is PDD-NOS, which those in the autism fold know as pervasive developmental delay-not otherwise specified. This is a diagnosis where you find the higher functioning autistic kids, where some but not all the symptoms of autism spectrum disorder are manifested.

He was diagnosed late--as many of the high functioning autistics are--in kindergarten, which was his first exposure to formal schooling. The issues of him being a bit unique quickly became very apparent as something more major when put in a room with 20 or so neurotypical kids. With such stark contrast, we couldn't attribute his poor language any more to his growing up in a bilingual household.

The kindergarten teacher recommended an evaluation, the team at the school considered him "from an educational perspective, traits consistent with autism spectrum disorder" and within a few months we'd chased down a behaviorist who confirmed this all with a formal medical diagnosis. With this, special education services began, and Adam was transitioned to a self contained special education classroom. That year, though I can't tell you how many freakin days he missed of school due to illness. He was sick all the time, complicated by his asthma and allergies. Emergency room visits due to grandma panicking over asthma symptoms, and vomiting were frequent as well.

Among the reasons he was diagnosed late included ignorance and the common denial aspects. Adam is a first/only child, and no one around him had had a typical kid around in many many years, so his missing milestones wasn't seen as a big red flag. He also wasn't going to the best of pediatricians, and to be fair, even those 5 or so years ago, pediatricians aren't as on the lookout with milestone questionnaires as they are these days. Diagnosis is getting better in pediatrics, and they're being caught earlier. In addition, there were many things that Adam did VERY well such that we thought he was ahead of the curb. He knew his letters and numbers very well before 3, was an ace computer user, and he craved attention and would give you eye contact that would teach adults how to give good attention to others. Like many folks I suppose, we all had that Dustin Hoffman in Rain Man picture of autism in our head, and Adam didn't fit that mold at all. He also did talk, but just not in sentences much, and he wasn't ever one to answer a question for ya. He did develop echolia which is where they'll repeat the question to you, knowing that you want some sort of response, but having no idea what to tell you.

Adam's 8 now, and remains verbal, echolia quite on the wane, still considered high functioning on the autistic spectrum, but compared to neurotypical (NT) children, there is a clear difference, mostly in language and style of play. If you watch him and he doesn't talk, folks wouldn't know this cute normal looking kid is really any different. But language and interactions are where it's extremely apparent that he's different. For instance, Adam at 8 is WAY behind our 3 year old's vocabulary, sentence structure, expressive language, and understanding of nuances like prepositions, what/where/why questions, and all the things that you tend to take for granted if you've never been around developmentally delayed kids. The three year old runs linguistic circles around where Adam still is.

On the plus side, he's made some great gains. In 2007, when he was 6, he started 1:1 speech therapy shortly after his diagnosis. In the first 6 months of speech his incredibly gifted speech therapist was able to help him achieve 2 years progress in language in just 6 months. Unfortunately his Kindergarten MLP teacher was not so gifted, was a mid-life career changer without a lot of talents to start with, and worst of all--a brand new special ed teacher. She could barely keep order in the classroom let alone lead any progress, unfortunately. We had a lot of school district wrangling with special education supervisors, learned a great deal about his rights to a free, appropriate public education (FAPE), and with the help of a special education consultant to get us into a better educational situation. The school district thankfully transferred us into a new school with teachers that are apparently the trainers for the district. His MLP (multi-level program, another name for the self contained special ed classroom) teacher is phenomenal, thank God. 2nd and now 3rd grade have been a night/day difference in peace of mind vs 1st grade because we know the school is doing their job so we can concentrate on the rest of the package.

This past year (2008-2009) since we've started him on a gluten/cassein-free (milk and friends/and soy free diet, supplements and biomedical fun last year, Adam had an INCREDIBLE 2nd grade year with some really remarkable progress. Since the diet started in 2nd grade, Adam is sick FAR FAR FAR less, allergies and skin eczema is far less of an issue, and he's able to attend school much more frequently than in the past. Furthermore, the fog of some sensory issues seems to have lifted, and he was able to actually feel when he needed to go to the bathroom. During 2nd grade, he was largely potty trained and would pee in the toilet, but poop remained a BIG STINKY LOOSE problem, and we were always on the hunt for pull-ups for a 60lb kid. Over the spring of 2009, though, several months into the diet/supplements and DAN! doctor care, we are finally diaper free. Gut issues went on the wane, the poop started looking more normal and formed, stopped stinking to high heaven of yeast and amonia, and he could feel when he needed to go... and he did. I can't tell you what a colossal freakin relief the whole poop/pee diaper free thing is. Took him until 8 years of age, but he made it (and grandma and all of us survived too).

My wife and I do a lot of care for Adam, as his family situation is complicated. Mom's not in the picture due to substance abuse and psychiatric issues. Dad's struggling with some demons of his own, but that's recently greatly improved and as I write this he's 3 weeks sober, and is slowly being drawn out of the house to participate in things with his son.

Grandma does most of his care, and Adam splits time between her house (where his Dad and 2 uncles also live), and our home where my wife, myself and our NT 3-year old boy live. Adam goes to school from our place where the bus picks him up and drops him off. He also sleeps here during the week so my wife can coordinate his schooling, supplements, therapy, and care. He's over at grandma/dad's an hour or so a day after school as well. After a year of having everyone bought into the program, transitions are going very well and Adam's able to spend more time with Dad/Grandma without falling off the wagon as it were.

Today, my observation of Adam is that he's healthy, not suffering any allergies, happy, alert, energetic, but he's not answering questions. He seems fixated on stimming off of cell phone videos, and was given a paper to take downstairs to my wife, but he just left it in the family room somewhere. When asked minutes later where he put it, he had no idea, and didn't answer. Smiles, and flitted on to play Pac Man, or with my 3 year old's trains, or something on computer. He has a therapy appointment today. And he "like to redeem my credit card miles." You see, he's rather fixated on the David Spade Capital One no hassle rewards credit card commercials. He has a sense of humor about it though. One question I can ask him: "Can I redeem my miles to go to Mexico?" He'll say with a huge smile: "No way Jose!" "How about Hawaii?" I could ask. "A-NO-ha!" he'd say.

There's something goin on in there... Hopefully one day we'll find out!

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