It’s autism awareness month and Sam sure seems to know it. He’s been spreading autism awareness around town all month, and not in a good way.
Quick: describe what autism looks like. Okay, now describe what seizures look like.
I would venture to guess you’re wrong on both counts.
By working with a functional medicine MD and through good nutrition, clean living, and the right supplementation, we’ve been able to take Sam from the kind of autism that nobody wants to talk about to the kind of autism nobody can see. Upon first glance, Sam may appear totally typical. And that’s where the problem begins. Sam APPEARS totally typical but he’s anything but.
With the right accommodations, Sam has been able to participate in many activities everyone else takes for granted. So at the end of last season, we purchased tickets to the Family Series at the Victoria Theatre. We did make a special request for box seats because if he were to have a seizure, we wouldn’t want to disrupt the entire show, and because he’s terrified when the lights go completely out…the box seat area has its own light that stays on. Upon discovering a genetic reason for his seizures, we started some new amino acid supplements. Any change can bring undesired consequences, even if they’re a sign of good things happening (more cognition can mean more behaviors), and we have been seeing an increase in his anxiety level and short fuse. He was agitated as we entered the theatre. It was crowded and noisy. Still, we made our way to our seats and he finally settled in to watch the performance of “The Cat in the Hat”. This was not the sensory-friendly showing, scheduled for the following day. This was part of our series. When the show finished, they did a Q&A session. We should have left before then. Just as they dismissed everyone, Sam loudly growled “HOME NOW!”, which terrified the little girl and her mother in the adjacent box seats. They fled. We reminded him we were going to Kroger, his favorite place, but it was too late. He was in full meltdown mode. He crumpled into a ball on the floor and we waited. And waited. Each time we checked on him, he was still growling loudly. It became evident we were just going to have to go for it. In hindsight, I wish we had waited until the theater was completely cleared out, but we started on our way. The whole way out, he growled, yelled, and huffed. People stared. People backed away. I’m used to the stares. I just focus on my job and ignore them all. I’d probably be staring too, if I were them. I was embarrassed, disappointed, and frustrated. So was my husband. But we walked silently to our car, Sam following loudly behind us. Then it hit me. Sensory-friendly performances are really code for meltdown-friendly. Nobody wants to see the behaviors they were witnessing from Sam. Let’s create a performance just for them. While I appreciate these special nights, it’s not because Sam can enjoy it, it’s so that if he has behaviors or melts down, nobody cares. At least we aren’t humiliated. This strikes me as ironic knowing that the Centers for Medicare and Medicaid have goals of embedding everyone into the community at large. They want everyone in group homes of no more than 4 people to a home, side by side with everyone else. Except that the world isn’t sensory-friendly. Nor is it meltdown-friendly. And then there’s the NIMBY (not in my back yard) mentality. It’s a good idea until you want to put a group home right next door.
My concern for Sam’s safety, being embedded in the community at large, grows daily. Yesterday, we were at our regular Kroger. I was in the produce aisle looking at herbs. I turned in time to see Sam aggressively pushing an older gentleman’s cart away from the man. The man was saying “Oh, you want to push the cart?”. Sam was having a seizure. I rushed over and got on the opposite side of the cart. I told the man that he was having a seizure, then turned to Sam. “Wait, Sam. Wait.”, I was saying. He was looking right through me. “Wait”, he said, but he kept pushing with all his strength. I held my ground. After a minute or so, I could see he was coming back to himself. I pointed to our cart and he let go of the man’s cart. I pushed it back over to him and apologized, hooked my arm in Sam’s and walked him back to our cart. Sam doesn’t look autistic and his seizures don’t look like seizures. What if that hadn’t been an elderly gentleman with patience? What if it had been someone who took Sam’s behavior as aggression and hit him or shot him? What if we’re not someplace where they know him? What if I’m not with him? Sam is 6’2″ tall with a full beard. It’s not a stretch to think his behaviors could be misinterpreted.
My heart breaks every time I’m reminded how dangerous the world really is for him. I don’t want to lock him up and isolate him from the world but I do want to create a safe space where he can be free to be himself. That’s what I see when I think of the farm we’re building. I see Sam living among friends and family, free to step outside his home (monitored), to explore the barn, visit with the animals, work the greenhouses, eat in the community center…to be independent to the extent he is capable of being, but still safe. Of course he’ll still do many things in town but his home…his home should be a safe space. Safe to yell, meltdown, or whatever he happens to be going through at the time.
While businesses seem to get the fact that sensory-friendly or meltdown-friendly versions of their offerings are appreciated for the fact that our kids can be themselves, government is pushing the other direction. Doesn’t make sense to me.