Autism and regressions: A balancing act

This is an excerpt from my book, All Across The Spectrum. You can pre-order here. 

Autism: A balancing act

With autism, I always feel like I’m playing a balancing act, trying to find a happy medium with everything. The balance between espousing autism acceptance and also making sure that people realize that autism is a disability. There are beautiful moments of sincere hope and more sobering moments reminding you to be realistic with your expectations. I remember some initial feelings of pure happiness and hope after Charlie spoke for the first time. I wanted to believe we had turned a corner. This was finally it, Charlie was going to start communicating and the past five years would just become a distant memory of an old lifetime. A struggle that was no longer mine. I imagined myself looking back on tougher times with a smile, knowing they had been put to bed. I could almost see it. Almost feel it.

Autism and regressions

But I also remember the nagging doubt, the feeling that this was too good to be true and that his breakthrough could just be another blip on the radar, not to resurface for a long time to come. That’s what autism does. It gives you what you want for a few days, weeks, maybe months, and then it takes it away. Cruel. Heartless. It gives just so it can take.
I try not to hang my happiness on those moments of progress anymore. I feel it, try to let it warm every fiber of my body for a day; two if I’m lucky, and then let go. I let it go. Experience has taught me that progress with Charlie has an expiration date, like a hot summer camp romance. It’s the best thing in the entire world in that moment and you relish every fleeting second because you know it will come to an end and you’ll be left heartbroken.

The first time Charlie said “mommy,” it was just incredible. I couldn’t believe my ears. Did this beautiful child of mine standing in front of me finally realize how deep my love for him was? Did he realize that I exist and feel the deep connection we share that I’d been feeling since months before he was even born? No, I don’t think he did. After the euphoria of the first few “mommys” faded away, it dawned on me: Charlie doesn’t know I’m his mommy. He doesn’t know that that is my name. He repeats the word because that’s what he’s learned to do but the meaning beyond the word, the emotion, the connection, just isn’t there. There’s no running to mommy if he stubs his toe, nor asking for a hug because he needs comfort. There’s no saying “mommy” unless someone asks him to repeat it, and there are never any tears when I leave him. Ever. I know that I’m his mommy, and I wonder if he knows it too.

Is it selfish?

Maybe it’s selfish. Maybe I shouldn’t care so much about Charlie calling me mommy. But I do. “Mommy.” It’s so much more than just a word. It’s an earned title, a reward. It’s the validation that the little human you created cares about you enough to give you a name, and even more, enough to use it. A name that’s yours forever. I crumbled to pieces when I realized that Charlie was just mindlessly repeating the word. I felt sad. I still do. But as the mother of a severely autistic child, I’m expected to stay strong or expose myself to the less-than-glorious title of “martyr mom.”