The Autism Society of Middle Tennessee is such a great organization. They work so very hard to keep the autism community in Nashville together. We have met such great people and do so many fun things as a result of their work.
Yesterday we went to their annual summer family event to Nashville Shores. Now, I'm sure there are lots of kids with autism that like big scary water slides, but I do not have that particular model. Much of our day was spent going up 8 flights of stairs dragging a float to a water slide, and then going back down 8 flights of stairs dragging a float from a water slide. But the good news is that I got a good amount of time to watch Truman have conversations with other spectrum kids. The conversation between the Aspies went something like this: Imagine 4 boys, all magnetically drawn to each other because one of them mentions Angry Birds. The others' ears perk up.
"I don't like Angry Birds."
"Yeah, me neither. It's boring."
"I beat Angry Birds in one day."
"I beat Angry Birds Rio in one hour."
The parents all stand to the side and smile quickly at each other in a knowing way. It's quite cool to watch them interact.
I imagine this same group one day years from now all talking, all unable to look each other in the eye:
"I think there's something else besides the Higgs particle."
"Yeah, me too. The Higgs is boring."
"I found the Higgs particle in one day."
"I found the Higgs particle to the 5-sigma level in one hour."
Their co-workers all stand to the side and smile quickly at each other in a knowing way. It's quite cool to watch them interact.
All of that aside, I met some really wonderful people yesterday. When you find an adult that has a kid on the spectrum and who has a kid on the spectrum similar to your own in age and issues, and you actually kind of connect with that adult personally, it's really awesome. I got that great gift yesterday, and even better, we had a full hour of (mostly) uninterrupted talk time.
As we were talking, she said something so gut-punching that it stayed with me all day yesterday and into today. She said that she has many friends with children who have much worse delays and issues and even physical disabilities, and that she feels guilty even admitting sometimes that her son has autism. She feels like she's taking away something from others; like she and her son are taking up space that someone else could be occupying. I have to admit that I felt this same thing. I even remember apologizing to the school counselor once when I went in to talk about something to do with Truman. "I'm so sorry. I know you have plenty of other kids with much worse problems..." You see the other end of the spectrum and its issues, and in comparison, your battles seem small.
But if you rationally follow this logic, you (really, your child), is undeserving of the attention and/or support that might instead be used for others. We'll always find a way to keep ourselves feeling guilty, won't we? Myself most definitely included. It's not coming from the outside, because I have never felt from my friends who have kids with much more disabling autism that Truman is undeserving of the autism title. It's coming from inside. It's one of those old films dredged up from my own brain and projected out onto the world.
My promise to myself and my hope for others with kids like mine is that we see their issues as deserving of attention and support. If we don't bring attention to it, who will? If we don't see it as deserving a second look, who will? Yes, he can speak, and no, we don't have to do a lot of different therapies. We are lucky. But yes, he has Asperger's. He has problems getting along in a lot of ways, and if I don't help him learn to deal with that by seeking support and being his advocate, then I have done him a life disservice just by being a projector with a broken film reel that just keeps flipping the same distorted image over and over.
Plus, I have to advocate for him so that one day when he rules us all he'll be a really good and benevolent ruler and not use his discovery of the QX12 particle to destroy the universe.
Yes! Room for everybody! Kumbaya and all of that. Our community is big enough for everyone, no matter where they fall on the spectrum. and we should all help each other because lord knows things are tough without support.
ReplyDeleteWhat's harder for many of us with kids on the high-needs end of things, is that we are sad to see so many of our friends drift away because their kids may be progressing at a faster rate, and they don't really.... well, for whatever reason, they often drift away, and we don't see some of them or their kids anymore. That always makes us feel lousy. I wish they'd stay. I'm glad their kids are doing well, I wish them nothing but success and happiness, and I would never want them to feel guilty or to hide their good feelings about their kids' progress. I do hope they are sensitive to others whose kids are moving a bit more slowly, and that they ask after our kids and are encouraging. I guess I just wish they wouldn't be so quick to pack their bags and leave us in the dust, because that kinda smarts. Sometimes it feels like they can't get away fast enough, you know?
What a good word Angela. I totally receive it. Thanks for the wit and wonder spent reflecting on the conversation.
ReplyDeleteGlad to be talking.
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