Special Needs Parenting and Coping With the Unknown

The lessons that help us survive and thrive in the time of COVID-19.

Posted May 07, 2020

 Ethan Jones/Pexels
Source: Ethan Jones/Pexels

In a matter of weeks, the coronavirus has upended just about everything in our lives. So many things that we took for granted—our jobs, our health, the way our kids are educated, even the ease of getting together with loved ones—aren’t so certain anymore.

And yet for me, there is something strangely familiar about this sense of upheaval. In fact, it feels strikingly similar to what I experienced after my son, Noah, was diagnosed with autism.

When you become a special needs parent, everything changes in an instant. After my son Noah was diagnosed with autism, I felt a tremendous sense of loss. Unlike that best-selling book for new parents—I had no idea what to expect.

If your child has special needs, you understand what this is like. But you somehow navigate through it all. You have no other choice. Little by little you learn to manage. And as time goes on, you find that you have learned a lot about how to cope with uncertainty.

In the wake of COVID-19, it’s been helpful to remind myself of some of the coping strategies I’ve learned as Noah's parent. Here are three lessons that continue to help me feel grounded, even as everything around me is in flux:

1.  Thinking too far into the future is a sure-fire recipe for unhappiness.

When Noah was diagnosed with autism, I would find myself obsessing about the future. My mind would go to particularly dark and unrealistic places. I remember, for example, tearfully brooding about whether Noah would ever to college, and my poor son was only two at the time.

Projecting into the future not only made me feel anxious and miserable, but it also obscured what was happening right in front of me. Early on, Noah was lucky enough to be working with a wonderful behavior therapist. He was beginning to talk, to feed himself and to draw with a crayon. It was only when I let go of my timeline that I could see Noah—and the progress he was making—more clearly.

So during this pandemic, as the plans I’ve made continue to fall away, I try to reign in my thinking so it revolves mostly around the present. No one knows what will be going on in a year, much less a month. I have no idea when Noah will be able to resume his job, or if he will return to his program at a local college. But for now, as Zoom classes have filled the void, I’ve gotten to appreciate Noah’s adaptability, and his growing ability to engage in online activities. All of this bodes well, for now and for the future.

2. Structure and self-care go hand in hand.

Parenting a child with autism gives you a keen appreciation of structure. Noah always does best when his schedule is consistent and clear. And when Noah is settled into a routine, my life gets a lot easier, too.

The pandemic has meant the end of Noah’s old schedule. And it has given me a newfound appreciation for structure. Noah is the kind of person who would be happy to be left alone with his iPad all day, but when he lacks some shape to his day, he becomes less engaged. Noah's current schedule of Zoom classes plus a daily schedule of chores and exercise helps keep him more connected to the rest of us.

Lately, I've come to appreciate how structure helps me, especially when it comes to making room for self-care. When I am anxious I tend to do even more work than usual. So my schedule needs to include time for ease as well as effort. Even 10 minutes of walking around the block helps me feel more relaxed. Limiting the time I spend working helps me slow down and indulge in whatever is going on, whether it is puttering around the yard or playing a game of Boggle with my husband and daughter.

3. Make room for the sweetness.

By the time my son was diagnosed with autism at the age of 18 months, he had completely stopped verbalizing. I didn’t know if I would ever hear his voice again. And then, about a year after he started behavior therapy, he looked at me and said “Mommy” for the first time. Thinking about that moment still gives me chills.

It’s human nature to focus on the things that are going wrong. But you risk missing the good things that are right in front of you. With Noah, I learn over and over again that I can take nothing for granted.

So amidst all the uncertainty of COVID-19, I try to keep an eye on the daily blessings.

The other day, after juggling between work and semi-successful attempts to keep Noah engaged in Zoom classes, I flopped on the couch, exhausted. And then I heard loud music coming from the other room. I was getting annoyed and was about to tell Noah to turn the music down. But then I started listening. Noah was playing the cast recording of Oklahoma, and he was singing along to “People Will Say We’re In Love” in his wonderfully strong voice.

Making room for the sweetness is probably the most important lesson that I have learned as a special needs parent. There is usually a gem in any situation, if I just look for it. And making room for that sweetness lifts me up on the most trying day.