It’s been 10 years since we got the diagnosis. 10 years is a lifetime and yet no time at all.
All those years ago I wrote a post about what it was like when Jon first got diagnosed with autism. I wrote about how I thought the tests were going to rule out autism, not confirm it. And how it made me feel at the time. It’s so hard to think back and remember what that was like. This has been our life for so long now that it seems like it’s always been this way.
When we first started this journey, we were grateful for the team we had. Jon was receiving a variety of therapies, including speech and occupational therapy. And he had great teachers at Pre-K. I remember when I went to eat lunch with him at school one day shortly after the diagnosis, I was sitting next to one of his teachers. I mentioned how I’d honestly thought they’d be ruling out autism, not confirming it. And she very kindly told me no, she could tell. She’d been doing this for 28 years and could tell just by working with Jon that he was on the spectrum. It hit me like a ton of bricks, but weirdly, I also appreciated it. I guess having it confirmed by a teacher who knew and worked with him made it seem more real and helped me accept it just a little bit more.
We’ve actually been very lucky when it comes to Jon and school. We always seem to have a great team each year. I think it helps that we’re so involved. Every year before school starts we’ll schedule a meeting with his new teachers so he can meet them and they can meet him before the chaos of Open House. And we introduce him to his environment so he can familiarize himself with it.
It’s nearly the same words every year –
“He has no filter and will not hesitate to tell you what he thinks. He has to be able to move around, but we promise he is listening and absorbing what you’re saying. He needs a space that’s his. If he gets upset, he’ll either growl at you or shut down completely. He may fire you. If so, welcome to the club. And there’s no telling which Jon you’ll get each day – super sweet happy boy, or grouchy ‘don’t look at me wrong or I’ll hiss at you’ boy. Either way, he’ll steal your heart and drive you nuts all at the same time. Welcome to Team Jon.”
It’s worked out very well. We were so incredibly lucky when he started the 6th grade. Every single teacher he was going to have was present, as well as the principal and assistant principal. His amazing 5th grade teacher joined us for the meeting so she could give her input from a teacher’s perspective on what to expect from him. It’s been years and it still means the world to me not only that she was there, but that all of those teachers committed to being there to meet and learn Jon.
And now here we are, high school. Yes, high school. (I don’t know how that happened, either!) I worried about this for so long. The school is enormous! And the idea of him trying to navigate the hallways with the throngs of students and the noise and the chaos just made me want to cry. But it’s 2020 and the Year of the Virus so plans have changed.
We didn’t get an in-person meeting this year. We didn’t get to go to the school so he could learn the environment and see where his classes would be. We did, however, get to meet his teachers through Zoom.
Right now, thanks to the Year of the Virus, all of their schooling is online through Zoom or Google Meet. (Technology is an amazing thing.) The other kids may start going back into the building second semester, but not Jon. He’s full-remote, meaning he’s staying home and staying online. So meeting his teachers through Zoom actually worked out because that’s how he’s going to know these teachers. Online.
Jon is quite a young man now. He’s smart and creative and funny. He definitely speaks his mind, and he still has no filter. He has, however, turned into quite the surly teenager. He’ll grumble and grouse when we want him to do things, just like any other kid his age.
Yet the bigger he gets, the more obvious it is that he isn’t like other kids his age. His stimming and quirks. How he moves. How he talks. There’s no denying that Jon is different. But we love him just the way he is. We determined quite some time ago that he will always be with us. While Katie and Nate will eventually move out, possibly go to college, and venture into the world, Jon will not. And that’s okay. He wants to stay with us, and we want to be here for him.
He’s becoming more and more particular about everything, which is worrisome. He eats fewer foods now than he ever has before. He refuses to participate in things that are not just the way he likes them. And I honestly don’t know what to do about any of it. Is it just a phase? Will he grow out of it? Or will it continue to get worse? More questions, fewer answers.
We’ve learned so much in 10 years. And yet there’s so much more we don’t know. But we have time.