Throughout his life, The Boy has attracted a great number of fans. He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team. Of course, The Man, The Boy’s grandparents and I adore him, too. He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities. And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary. Everyone knows The Boy.
But usually, it doesn’t start out that way.
Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum. The very challenges that define the disorder make it difficult for neuro-typical people to get to know him. They tend to gloss over his human-ness and focus on what he can’t or won’t do for them. And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.
This is the downward slope upon which we were sliding with his band director. But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?” As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.
Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative. He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”
I will take what I can get – no lie, this is a huge victory for The Boy. And I absolutely love how loved my boy is. But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is. He shouldn’t have to prove it before people will accommodate him.
He has also not had the skills to wash his own hair, which can be quite the challenge when he does everything in his power to hide his body from you. For a few months, he would take his shower, and then I would wash his hair in the kitchen sink with the sprayer. This became quite the production.
When I was a band director, it was always expected that I took the bands to “Festival,” which is a nicey-nice term for what it really was – competition. Ideally, the judges would rate each band according to an ideal, a standard, but in reality, they were comparing your group to the other groups they’d just heard, and would hear after yours, and indeed the phantom college band they had playing in their head at all times, being conducted by some very famous college band director. And when you were done they would post your scores in the cafeteria, right under the group that had performed before you, and right above the group after you, so everyone could compare… Yep, it was a competition through and through.
I am in a hotel room by myself, while my husband and son are hours away. It’s the first night I’ve spent away from my husband since before we were married, and it’s the first trip I’ve taken like this since I-can’t-remember-when.
Simple. I Just Do. 