Geared up and ready to work.
When Alex turned 13 I couldn't ignore the reality that adult hood was coming. I had to start making some hard realizations. A cure wasn't coming. Conversational language may never happen and behaviors (or some of them) weren't going to go away. This could be the rough outline of the future.
We all go through this. We grieve when we get the diagnosis, we do all we can and at some point we make peace with what isn't going away. Making this peace with Autism is a softer grief. I still think about a life without the struggle but the emotional scar tissue is a buffer. I feel pride at how hard our kids work to make gains, so much harder than their typical peers. And in those rare moments there is so much beauty it's almost painful.
So I started making my peace with Autism. I stopped looking at every behavior as as something that needs to be changed or worked on. I believe that Alex can learn, work and have very visible Autism.
Making my peace with Autism was the first step. The next step is getting his community to make peace with Autism, they have a tsunami of adults with Autism headed their way. The community is going to have to adapt. Somebody recently asked me what I hoped for in Alex's future. I said I wanted Alex to be part of a community that Alex can move freely in. I want him to be able to take the bus independently. I want him to be seen as a person living with a disability. He might be jumping in place, he might be speaking some Disney movie script but he isn't seen as a threat, he's not on crack, he's a person with Autism. I want Autism recognizable in the way that Downs Syndrome or Cerebral Palsy is recognized.
We do this by taking our kids in public, early and often. I don't want to minimize to other parents how hard it is. Our kids can look strange or scary to the uneducated. I took Alex to the grocery store today. He needed his industrial headphones, which he likes to wear over his pulled up hoodie. He weaves through people a little too fast, always seems poised to break out in a run while pushing the cart, (which has happened) he usually has to take a jumping moment when bagging the groceries. We get noticed. People get flustered. I can get the stink eye and comments from strangers. When we finally get to the car to leave I feel like I've worked an 8 hour day. And I'm going to keep doing it. People need to see that our kids can participate in public life. Our kids don't need to be separated from their communities.
This is the how we put a human face on Autism. It's the way others see how much our kids CAN do. The cashiers at the grocery store know Alex. They always say 'Hi', they are not offended if Alex doesn't always respond. They know to wait an extra minute (or two) if Alex needs to jump before using the debit card to pay. They don't act worried or scared at his behavior. That lady that gave me the stink eye in produce? She's watching the cashier say "Hi Alex." and wait, wait, wait for him to pay. She notices that the cashier and I don't look worried when Alex jumps. She's watching someone with Autism participate in their community. People got used to Downs Syndrome and Cerebral Palsy, wheel chairs and sign language, they can get used to some jumping and Disney speak.
Our family got some serious stink eye this month. We also had the Alex's community reach out to us in ways I never expected. They are ready to accept our kids, they just need the opportunity to meet them.