“I would say he’s begun to do that in the last six months,” I said to the doctor in response to her developmental probe into my son. “Isn’t progress wonderful?” The question was innocent enough, and for once, I was able to digest it without frustration or sadness. “It really is,” I replied with a smile and actually meant it.
The thing about progress, for me personally, is that my son had a regression of skills just after his second birthday. That means most of his progress is abilities he knew how to do over three years ago. But here we are, far behind from where he was at age two, but farther along than we were at age four. It is such an odd feeling. Seeing the progress and not feeling overwhelmed by the mountain ahead.
I remember the foggy feeling when a therapist would be thrilled when my son made a different sound or insinuated he was on the first language steps. I remember the feeling of seeing my son make progress but being unable to appreciate those moments because they seemed pointless as the gap between his peers became larger and farther. But mostly, I remember the disappointment and shame in myself from being unable to feel joy in those moments of progress.
And here I am. Today, in this brief moment of talking about my son and all the things he can’t do, talking about something he has begun to do was the moment that has stuck with me all day.
The struggle of meeting milestones is something that sits with many special needs parents and caregivers. Watching your child fall farther and farther behind is not something that anyone wants, especially when you fight tirelessly for services, practice the methods at home, and invest so much in particular products, ideas, and your most precious resource, your time. The frustration can be enough, but seeing it in writing can take a mental toll that I didn’t completely understand.
Seeing things in writing make them feel so much more wrong. Yet, at times, our life is so uniquely normal. Of course, I realize this is not what a “normal life” should look like. But to us, in many ways, it just is our normal. So when you see it on paper, pointed out it can remind you of how your life isn’t as it should be. And somehow, it’s hard not to be thrown in a tailspin.
At times, it feels like I have failed when my child isn’t progressing. I know this isn’t true in my heart and head, but somewhere in the middle, this voice creeps in that tells me I could have done more.
But not today. Today I felt excited at the little progress he has made because you have to start somewhere, and today that realization feels fantastic.
So, I could look at all the things he still can’t do, may struggle with, or will never do, but not today. Today I will rejoice in the fact that not only did he make progress, but so did I.