Parenting a child with autism during COVID 19
By James Guttman
James Guttman is the father of two children, a nonverbal eight-year-old with autism and a non-stop-verbal eleven-year-old without autism.
The biggest issue that I, as a father, faced upon learning my child had autism was the uncertainty of the future. I begged doctors, teachers, and professionals to give me some sort of concrete answer about what the coming years would look like.
After all, my view of autism was based on TV and movies. People on the spectrum hated being hugged and didn’t show emotion. They counted toothpicks and had hidden powers. They were teenage doctors and magical beings. It was all very Hollywood.
My son, however, was none of those things. He was, and still is, nonverbal, but he loves a good hug. We’d laugh together and he never cried when I tickled him. There was love billowing out of him and, although he had no words to express it, he showed me in so many other ways. So, my understanding of autism and his future didn’t match expectations.
It left me with a sense of dread over what could be, rather than what I knew would be. I didn’t know what tomorrow would bring and that’s what drove me crazy. The days, weeks, months, and years were all a mystery and, because of that, I was scared.
Just like now.
It may sound bizarre, but this whole global pandemic brings up so many familiar emotions from those early days of autism parenthood. Just as I did then, I have to do it now. I have to accept that I not only can’t change the present, I can’t even know what the future is. No one does. The fear isn’t based so much on definites. It’s based on uncertainties.
I can’t promise anyone anything. My family, friends, and you, reading this now, have to hold on and hope for the best. The only thing I can offer is a look back at where I was then and where I am now. I learned something from my son that, as I sit in my house 24 hours a day, I try to remember.
Everything is fine. Even when it’s not.
Had you asked me all those years ago what I feared the most, I would have been stuck for an answer. I knew I wanted him to talk. I wanted to hear my boy say “daddy” or, as time went on, anything. To go back now and tell myself that wouldn’t happen even as he’s about to eat his ninth birthday cake, would feel like a massive letdown. Still, I realize now, that it wasn’t what I feared most.
I feared not knowing. I feared the unknown. I feared what might be. Yet, here I am, living in that future. I’m not only still standing, but I’m standing with a wonderful boy who fits so perfectly into our lives that we wouldn’t have him any other way. Everything isn’t fine. It’s better. It’s perfect.
Can I guarantee that’s where I will be after this whole Coronavirus movie plot plays out in our lives? Not really. I can’t guarantee anything. I learned that a while ago. All I can do is grasp on to past experiences and life events to understand that tomorrow, even when filled with uncertainty, could end up better than you ever imagined.
I don’t know when this will end. I don’t know when my children will be back at school and I’ll be back to ordering a venti whatever from Starbucks. I do know that I’m here now and I’ve been given some amazing gifts in my life. If anything, this shutdown of life and chaos of tomorrow will allow me some time to truly appreciate them.
Deep down, I know things will be OK tomorrow. They always have been. If not, I’m going to make the most of out of today. We all should.
Autism Speaks Covid 19 resources and information:
Regularly updated information and resources on COVID 19
What should the autism community know about the coronavirus outbreak
How to handle school closures and services for your child with autism
How to handle clinical care during social distancing and school/program closures
How to cope with disrupted family routines during COVID-19
Autism Speaks Provides Urgent Feedback on Federal Coronavirus Bill (S.3548)
Priorities for the Autism Community During this Time of Crisis
