The X-tra Special Boy

I recently spilled my guts on the blog about some of the more significant events of the past few years. I got a few comments and a few emails asking for details - nothing pushy, just out of interest. So I will break it down into 5 posts, one for each item in the original post.

I haven't talked much about Boone's Autism Spectrum Disorder (ASD) because I had no clue where to start. At first I had no clue what it even meant and how I coped with our new reality change from day to day.

Boone seems like your everyday neuro-typical kid. He has good days and bad ones and likes to play with everything from sticks to computer games. This actually made it harder to explain to family and friends who would tell me he was "normal" or "fine", the implication being that I was wrong, which I considered. There was even a trace from some that I was making excuses for him or labeling him out of some sort of need of mine, which I also considered. It was a difficult period filled with grief and guilt and appointments and assessments. Having my suspicions confirmed by a neuropsychologist didn't help at all - as you can probably imagine.

Boone is exceptionally clever. He knows his shapes and colours, can count past 100, can name over 30 countries, is a whiz on the computer, can recite the scripts of all his DVDs (including the trailers), and he started reading when he was two. This is called Little Professor or ‘Geek’ Syndrome.

He uses a repertoire of phrases as opposed to making his own sentences. For example, when he's upset he’ll say "I don't want to be in the race anymore, we lost and it's not fair, ahh!", which is a line in a video used by a character that is obviously upset. This is called Echolalia.

He does not ask questions like "why?", he is confused by abstract questions like "what would you like?’, he avoids eye contact, he much prefers to be alone and has been known to hit or scream at children who get too close. He can have tantrums during times of transition and was unable or unwilling to potty train until he was 4. He has very particular ways of doing things, including how he eats and how he plays. He flaps his arms and zones out, likely to block out the overstimulation he experiences in his world. This is all symptomatic of ASD.

I now understand those book titles such as “Born on a Blue Day” and “Wednesday’s Child” and “The Boy Who Ate Stars”, all stories about ASD, but I can’t explain why they make sense to me. I have a new appreciation for the word "special" and wish there was another, better word to explain the quality of being that he possesses.

He’s different, not defective. With my gained perspective and patience and his natural abilities and the maturing process things in our house have reached equilibrium; acceptance on my part and trust on his part means we can function now – and quite nicely.

What does our future hold? Only time will tell and I’ll do better keeping you all up to date!!