I hate labels.
Worse, I hate labels on children.
I had two huge fears when Jacob was being labeled with autism. First, that he would be ostracized, and made to feel alone and less than everyone else. Second, that people would set the bar so low that he’d never be expected to accomplish anything; or that people would miss the boy behind the label.
When your child has such severe expressive and receptive communication problems, it’s easy to keep secrets from him. We never really discussed with him the implications of autism, and what it means. He didn’t have the capacity to understand, anyway.
We used autism in our discussions with Jake’s siblings when trying to help them understand why Jake does the things he does, and acts the way he acts. At first, Gabe was jealous of the “special” treatment Jake gets. “I wish I had non-tism!” he’d shout as he’d storm upstairs as a very young boy. After a while, both Gabe and Liv would use it as an explanation for their friends. “He’s autism. You can’t just yell at him. He doesn’t get stuff like we do.”
After the MPBN documentary we got to be part of, we were given a number of copies of the show on DVD for distribution to friends and family. Jake would see his face on the cover and quietly ask, “I’m autism?” Yes, we’d tell him. You HAVE autism. When the monthly issue of the Autism Society of Maine Newsletter arrives at the house, he’ll peek at the cover and you can see him thinking. In the past few years, we’ve done as much as we can to help him understand ASD and how it affects him. It’s debatable as to how much he understands.
Well, it’s Walk season. By Walk I mean the annual Autism Society of Maine’s Walk For Autism. It’s their biggest fundraiser of the year, and the proceeds support all the great programming in the state to support those on the spectrum and those impacted by the disorder. We (Jake’s Team) have already begun fundraising, and you are invited to make a donation. Shameless plug. See sidebar —->
Anyway, Medway Middle School gets fliers all the time for things, and the principal saw a form where you could order an autism awareness t-shirt. She wanted one, and asked the special education director if she did, too. She did. They noticed that if you ordered a dozen or more, you could get free personalization. They put the information in the staff room, and nearly everyone in the school ordered a t-shirt. As a wonderful gesture, they ordered a shirt for Jake!
It came home with him from school the other day. In his overly loud voice, he cried, in mock-astonishment, “AUTISM!?! I’m autism! I’m a gooda autism boy!” He put his shirt on, and declared himself a “gooda handsome autism boy!” He loves this shirt.
Not only is he made to feel a part of his school, he’s got a good circle of friends to protect him from bullying behavior, and teachers who really care about him and think to include him in things like this. He feels quite loved, and I’m thrilled. As an added bonus, Medway Middle is hosting a chili/chowder contest in April for Autism Awareness Month, the proceeds of which are going directly towards the ASM’s fundraising efforts.
How do I bring this back around to labeling kids? I don’t know. My fears have NOT been realized, thankfully; and in this case, Jake has shone through the label and is bringing people together for the greater good. That makes me happy. He really is a gooda autism boy!