2014 seemed like it was going to be a good year. Our two oldest were enrolled in a private school dedicated to kids on the high-functioning end of the autism spectrum, and they were actually enjoying it. We were, too. Who wouldn’t? There is very little homework, and the teachers are both knowledgeable about ASD and approachable.
Our next two oldest kids were making good strides in the public school, including a very responsive IEP team for our fourth child. And the two youngest were skating along beautifully, showing the world just how much they could learn.
We had taken a relatively incident-free overnight trip to Disney World in January, and in February we took a longer trip to visit my father in Tampa—again, with no real problem. During that trip, we took a side visit to Sarasota that blew me away. The primary purpose was to visit my mother’s grave, but we turned it into an all-day thing, throwing in a lunch at a restaurant downtown. That entailed walking through a crowded arts fair. But again, with no incident. What’s more, at the restaurant, two people told us how beautiful our family was and how well-behaved our children were. I couldn’t have been more proud!
Things were going so well, in fact, that I caught myself wondering whether I was making a mountain out of a molehill with all this autism stuff. Was I just being too dramatic? Was I letting my fears color the way I looked at my kids? Maybe I was turning my anxieties into self-fulfilling prophecies.
Oh, Well . . .
That was a few weeks ago. Since then, we’ve had to deal with . . .
• A huge melt down from one of our private-school kids over a Doctor Seuss celebration the school had been planning. This trivial event brought back embarrassing memories from a similar one seven years prior. “I can’t go to school,” she wailed. “Don’t you remember how I had a migraine in kindergarten during Doctor Seuss Day, and I threw up? I don’t want that to happen again!” It took two hours of helping her work through it before we could get her to school. Ant that was just the beginning. For the entire week afterward, she became so anxious that she began throwing up every day.
• Completely irrational anxiety from our oldest about his upcoming confirmation—all because of a cognitive glitch that left him petrified of our local bishop. Seriously, the guy’s a kindly Cuban gentleman who lives next to the cathedral in St. Augustine. But my boy was convinced that the bishop was going to interrogate him in front of the whole congregation and condemn him to hell for his sins!
• Increasingly angry, sometimes violent, outbursts from our eight-year-old every evening. Once he’s surrounded by the whole family at the dinner table, he becomes jumpy and irritable. Too much stimulus that he can’t control. Too many voices talking. Too many flavors and textures on his plate.
• Our ten-year-old whiz kid fighting tooth and nail instead of doing the bang-up job he was capable of on his STEM project. The melt downs bordered on the epic because Minecraft had to win out.
• Our six-year-old girl collapsing into an emotional heap every time we corrected her for the slightest mishap.
• Our five-year-old boy suddenly becoming unable to sit still for love or money. Unless he’s playing Fruit Ninja on my iPad or watching YouTube videos of Angry Birds on the computer.
So yeah, it’s been a trying couple of weeks that left me wondering what the hell happened. Everything was going so well, and then all of a sudden it wasn’t.
All this has shown me something, and I hope I don’t forget it.
Good days come, and you get a break every now and then. Maybe even a longish one lasting a couple of months. But God help you if you ever let down your guard. If you don’t keep working with your kids, if you don’t take advantage of every opportunity to move them forward another step or two, you risk losing more ground than you thought you had gained.
I knew it, but I relearned it: ASD is permanent. It’s also a tricky S.O.B. Just when you think you’ve got it figured out, just when you think your kids have it licked, it comes out of left field and says, “Not so fast, Cowboy!” This is especially true when your kids are high-functioning. They get good at masking what’s going on inside them, until they can’t take anymore. And if you’re not careful, you play along with them.
The Trap of Wishcraft.
It also showed me the power of the imagination. In a sense, I was in denial because there were no immediate crises to deal with. Things were relatively smooth, and I let wishful thinking take over. Rather than pay attention to the signs that some of the kids were beginning to unhinge, I slacked off and enjoyed the rest. And yes, there were signs. Katie saw them and tried to alert me to them. But I didn’t want to look. Instead, I conjured a fantasyland in my mind and tried to make the outside world conform to it.
I don’t think I’m the only parent who does this, by the way. Everyone takes a mental vacation every now and then. But in the case of special-needs parents, the stakes are usually much higher.
So we slid down the mountain a bit. It happens. But that’s okay. I’m back on the watch tower now.