SILVER SPRING, Md., June 10, 2012 — Last week was my sons’ elementary school end-of-the-year carnival. There were moonbounces and kids playing soccer and a DJ and a playground and food and about a million kids and everyone was having a great time.
Except for me. I felt as if I were having a nervous breakdown.
These events are always so stressful for me. As a parent to a child with autism who is, in the parlance of the times, an “eloper,” it is excruciating to give him personal freedom but also try to keep my eye on him as he weaves in and out of crowds of people. Add two other children that I have to keep track of as well and it is no wonder that I spend the evening scanning the crowds and counting my children.
That is the practical side. Then there is the emotional side. My kid is different than the other kids. I get that and I’m okay with it. I think my kid is pretty cool and I don’t care that he has a different way than everyone else.
What I do care about is how hard it is to watch all the other kids ignore him. I care that he stands on the edge of the group and he looks like he wants to join in, but he doesn’t know how. I care that when he sidles up to other kids in his own little autistic way that they shrug him off without looking at him or they glance at him and then glance away. These reactions make going to these events a profoundly sad experience for me.
I care that the other kids don’t get him and that the other adults really don’t even notice.
I look at the elementary school carnival, at a school where he has been welcomed and, for the most part, treated very well, and I see a hard future in front of him. I see a future where, if he can’t step forward with the same bluster as the rest of his peers that he will be left behind. That is where my heart breaks—not because he is that way, but because the world is not built for people like him.
There needs to be a shift in the way the world looks at developmental disability. My son’s way of being is A-OK. The world’s way of reacting to him is not. This is why I think awareness still matters.
When we were at the carnival, I asked my son if he liked coming to these things and he said yes. Later I asked him if he had fun and he said that he had. I am grateful that he either doesn’t notice the social cues that indicate that his peers are dismissing him, or that his way of fun is different and he doesn’t care about being with the other kids. Or maybe, in a much more upsetting thought, he is so used to feeling dismissed that he assumes that is the way it is supposed to be.
I am so glad that he had fun and that he seemed happy at the event, but I know that he will notice this subtle ostracism and difference as he gets older. He will come to recognize how much harder he has to work to fit into this world and my heart breaks for the pain that is to come.
My son and I work so hard, both in learning how to adjust to this neurotypical world and in advocating for him in particular and for disability rights in general. It is ordinary events such as this that remind me just why we are fighting so hard.
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times. Please credit Jean Winegardner and the “Communities at WashingtonTimes.com” when linking to this story.
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