One thing I’ve learned in a decade of parenting a child on the autism spectrum: You learn to anticipate, but you still never know what will throw your child off kilter. And nothing is ever truly in the past.
I guess that’s more than one thing, but you get the point. You do your best to anticipate and manage the Big Things that are consistently an issue, but sometimes the train can be derailed by nothing more than a pebble on the tracks.
Heading into this school year, we did our best to anticipate and ease Ryan’s various concerns. Veronica took him on a tour of the school over the summer to meet teachers and learn his way around. We bought a combination lock so he could practice for having a locker for the first time. The wild card was the bus. There was no adequate way to prepare him for riding a school bust for the first time since pre-K. As has been well documented here, the bus turned out to be the biggest issue for Ryan — by far.
Just Wednesday I wrote, in an update on various topics, how things had really improved with the bus. It arrives on time consistently in the morning and Ryan likes the new driver much better. He still dislikes how some kids are loud and misbehave, but he was tolerating things.
On Wednesday, Ryan got off the afternoon bus sobbing, in an uncontrollable mix of sadness, fear and rage.
So what was the pebble on the tracks?
One child complained loudly that she wanted the old us driver back, and the new driver, the one that has made things so much better for Ryan by her mere presence, made an off-handed remark about the kids perhaps getting their wish.
We weren’t there, and Ryan can’t tell us exactly what was said. In piecing it together, maybe she expressed some exasperation with the kids who were misbehaving. She might have been referring to the backup driver — the one who has been training on the route, the one who just happens to look, at least to Ryan, like the original driver, setting off a mini-panic — taking over.
Whatever was said, Ryan heard the original driver was coming back and could not control his reaction. He was afraid — not so much of the driver being mean, but of a return to the days when the bus either came very late or did not come at all.
Our sitter, who was picking up the kids that day, is incredible with Ryan. She is patient and kind and reassuring and can usually disarm an emotional crises, but she had to call Veronica to calm Ryan down. Veronica spent 20!!!! minutes on the phone with Ryan, attempting in vain to ease his fear. Twenty minutes is a year’s worth of phone time for Ryan. He kept telling her was just so scared. She had me call the transportation department, where I am well known, to make sure there were no plans to replace the driver. I was told there were none, but even this message relayed failed to help.
By the time I got home, Ryan was calm — at least outwardly. Inside, his anxiety was on overdrive. Veronica was sure we were in for a long night. She knows her child. Of course she was correct.
Ryan could not go to sleep. He kept telling us he was worried about the bus. First Veronica tried sitting beside his bed, at his request. He asked if she would sing “Danny Boy” to him for the first time in years, which she did — through tears. Then it was my turn. My singing voice is not soothing to anyone, so I just grabbed a blanket and curled up on the floor and listened to him breathe — just like so many parents do next to so many newborns. Every time I thought he was asleep, he would stir. Veronica took another turn. Still, sleep would not come. He eventually spent a few restless hours sleeping next to Veronica in our bed while I slept in his.
It is all we can do in these moments, when his anxiety gets so overwhelming, to comfort and support him. I have been reading a lot of really insightful posts lately about whether various treatments for autism merely cover it up rather than actually helping the autistic person understand and feel good about themselves. It’s a difficult and fascinating debate, and a huge source of controversy in the autism community. I have avoided taking sides. Monday I wrote about whether I was redirecting Ryan’s behavior to benefit him, or to benefit me. I was conflicted, and eventually opted to leave him be.
Wednesday, I was not conflicted. I would do anything to remove this burden of anxiety from Ryan’s life. There are so many positives for him. He is doing wonderfully in school. He participates in team sports. He has shown signs of new interests. To see him paralyzed by anxiety is very helpless. I don’t know any other way to react other than to do anything in my power to help him through it. This anxiety may be a part of what makes him who he is, but as much as I love every part of my son, I do not love what anxiety does to him and to our family. Riley gets shortchanged as both of our attention is focused on her brother. Nobody gets enough sleep, and I’ll be the first to admit I am not nearly as good a parent when I don’t sleep.
Do I want to “cure” my son? No, I don’t think like that anymore. Do I want to do every single thing possible to help him navigate the challenges that autism has put before him? Of course I do. I don’t know any other way to be a parent.
- What the Bus Carries (pucksandpuzzlepieces.com)
- I Wish I Had a Different Brain (pucksandpuzzlepieces.com)
- No More Mr. Nice Guy (pucksandpuzzlepieces.com)