“How is he doing?”
I often get asked how Charlie is doing, and the truth is I’m not sure how to answer.
I wish I could just ask Charlie. Such a simple question, yet, I don’t know. Apart from some obvious things, all I can do is guess. Charlie seems happy more often than not. Until he can’t express his needs and all hell breaks loose, that is. As far as learning essential skills go, things are still slow. We see progress, and we see regression too. Even though I give a raw look into the life of parenting a severely autistic kiddo, I do tend to sugarcoat even now. I think maybe it’s because when I do that, it’s almost as if the negatives disappear just a little bit.
In reality? I’m scared. Sometimes, when I think about the future it makes my head spin. Will Charlie ever be able to attend a traditional classroom at school? Will he ever find a way to really communicate with us? Will he learn all the basic self-care skills?
Charlie is going to be seven in March and he still can’t communicate beyond basic needs with an app on his iPad. While it’s heartbreaking to witness his distress when he can’t make himself understood, the hardest part for me are his attempts to break free and run in the street, or his complete and utter disregard for the downside of playing with unsanitary things. I gotta give him that: he’s creative when it comes to finding ways to put himself in danger.
Autism, love and sadness
I often hear that we, parents of autistic children, should focus on the positive. And it’s true. We should. And I do! Most of the time, I really, really do. But occasionally, certain realities hit me hard, and I get sad that my 6-year-old saying “buh” for “bubbles” is so unexpected that it brings tears to my eyes. His peers are learning to read and write and we’re still working on toddler-level skills. I don’t want him to struggle like this.
Some days, I’m able to see the glass half full—others, I’m not. You know what? That’s okay. I’ve said it before and I’ll say it again: you can feel sad about your child’s struggles and still love them with every fiber of your being. We want them to progress, not to change to some nonexistent standard of normality. It’s because we love them. It’s because we, as any parent, want life for our kids to be fulfilling, and filled with meaningful relationships and well-earned successes.
My book, All Across The Spectrum, is available here.