Once You Get to Know Him

IMG_1303Throughout 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.

 

 

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Disability and Celebrity

I’m sure you have seen the videos that have been popping up, slightly more frequently in recent years: some student with a disability making an amazing shot in basketball, because the coach told him to suit up for the last game of the season, or the boy with autism who was voted Homecoming King, or the many others that are out there.  You can often hear the crowd chanting the person’s name, and screaming wildly when the shot is made, or the name is announced.

My kid is a bit of a celebrity at his school.  Everyone seems to know his name: students, parents, even kids who are older and in middle school who live  in the neighborhood.  We go somewhere in town, and someone says hi to him and calls him by name, and I have no idea who it is, and many times, neither does he.  He’s a celebrity, partly because they have such good programs to “initiate” the general ed kids into what their ASD classmates are experiencing, and I think partly because he’s a “6th year” student at his school, having attended the same school all the way through elementary.  The longer you stay in one place, the more people with whom you come in contact.  That’s my theory, anyway.

But, I watch these videos, and I wonder.  I wonder if this “celebrity” is an entirely good thing.  I wonder if it would be even better if there was no news story, because it would be a matter of course for someone with a disability to win Homecoming King.  It would be a matter of course for kids with disabilities to compete in sports, perform in music programs, do whatever it is that typical kids do, and do it well.  And it would be a matter of course for our kids to have friends, rather than fans.

Until that day, I will continue to share these videos and spread the hope that they bring, because they do leave me hopeful, if not entirely satisfied.  I am always proud of the person in question, but I am so hopeful for those kids who are “fans” of the person in question.  I am hopeful that someday (if they haven’t already), they will realize that this person is real, and not a character.  A potential friend, rather than a celebrity.