The last couple of weeks have been an emotional roller coaster for Cheeks and me. We’ve had a lot of hard moments. I’ve been torn about whether to write about them, because I feel so strongly about treating him with respect. Sometimes that means protecting his difficult times from public view, as any of us might do for ourselves. On the other hand, it’s also important to me to be authentic about our experiences, and that includes the less attractive sides. There’s no shame in our story, so there’s no need to conceal it. I land on different sides of that argument depending on the circumstances. This time, I have decided to tell the story.
A few months ago we were introduced to a teaching method for students with communication disorders that we have come to believe will be a good fit for Cheeks. It’s a somewhat controversial methodology, mostly because mainstream credibility only comes from having a wealth of data supporting its efficacy, and this program does not yet have that. But as I have written here before, the decision to try something with Cheeks has to be subjected to two questions: 1) Is the risk low enough relative to the potential reward?; and 2) Can we do it in enough isolation that I don’t attribute changes to one intervention that are actually due to another? Having passed those two tests, we decided to try this program. I will write more about that in a future post. It’s not a private matter, just not the topic today.
Early results have been good, Cheeks is responding well to his academics. So well, that he is showing capabilities I have long believed him to have, but that we have been unable to access before now. I can’t overstate how huge this is for both of us. I’m able to see his intelligence, and he’s starting to be challenged at his true level of ability.
But, my mother always said that nothing worth having comes easily. And so it has been true this time as well. Cheeks has been experiencing so much disruption in his psyche that it’s manifesting itself in some pretty extreme behavior. He’s always shown self-injury when he’s upset or anxious, and lately we’ve had an increase in the intense moments that trigger it. Even more concerning is that he has shown some aggression to me during these tantrums – something he has only done a few times before in his life, and never this deliberately. Right now I’m sporting a few battle scars.
I’m left with this strange combination of emotion. I am so filled with hope and certainty that we are doing the right thing in starting this program. That certainty has never come to me with any therapeutic decision we have made up until now. It has been absolutely glorious to feel it. But I am also distraught over what ostensibly appears to be regression in his behavior. There really is no pain like watching your child in so much distress that he causes bruising and bloodshed to both himself and someone he loves. I know he doesn’t want to feel that way, and he doesn’t want to hurt me or himself the way he has. I’m constantly wondering when the wrong bystander will see something out of context and his or my security will be threatened on a whole new level. And the process of experiencing all of this at the same time has been emotionally exhausting for me.
Autism isn’t pretty, I already knew that. And my resolve has not been shaken. I know this will end up being a good thing for Cheeks, I just know it deep in my heart. The getting there will challenge us, maybe more than anything has before. It will be hard, for sure. But the only thing harder than that would be not doing it.