Stacie Sherman

Sending our special-needs kids back to school poses many risks, no doubt. So does keeping them home.

It’s understandable to be wary. But the alternative does not solve the problem. In fact, it creates many additional ones.

I don’t think any of us expected to be home this long. But here we are, more than four months in, and no one – no one – has any clue when our lives will ever get back to “normal.” Or whatever “normal” is when you have kids with disabilities.

We are in an unprecedented crisis. This coronavirus outbreak has taken a toll on our physical and our mental health. Some people are loving the work-from-home and teach-from-home gigs. Others are ready to jump off a cliff.

I’m somewhere in the middle. Writing and editing stories was something I once thought I could do only in a newsroom. Coronavirus has taught me otherwise. My work-from-home scenario now involves a laptop-and-monitor setup at my kitchen table, slippers on my feet and a wardrobe of jeans or sweatpants. My day starts early with some coffee, some editing, perhaps a yoga stretch or two. Then tending to my 18-year-old, severely autistic daughter’s daily living skills, some remote learning. Then back to work nonstop until dinnertime, when I’m caring for and entertaining my daughter until she goes to bed. Then we do it all again. Like Groundhog Day.

I’m grateful to work for an understanding company that’s in no rush for staff to return to their offices. I’m lucky I can afford a godsend of a caretaker for my daughter, and that my ex-husband gives me a break every other weekend. Otherwise, I would have lost my mind, no doubt.

I know several parents at their wit’s end. Most can’t find or afford a caretaker. They are not teachers, and yet they’re central to any remote learning program for the severely autistic. For months, they’ve sat side by side with their child, helping them navigate their computer and work on their school programs at home. At the same time, they must deal with increasing behaviors of their children as a result of their schedules being upended.

Many of these kids are not sleeping more than a few hours a night. Many are beating up their parents and themselves out of frustration with being stuck at home all day. They are used to a schedule of classes and community outings. They thrive on school, on learning. Their parents, no match for specially trained teachers, are losing their minds.

My daughter has been a party animal this past week, most nights waking up around 2 a.m. or 3 a.m. and staying awake to watch videos and eat pretzels. Every weekday morning, we do remote learning with her teachers. Most days, she is awesome. Some days, she punches herself in the head, squeezes my fingers so tight I yelp, drops to her knees so hard she scrapes them, and begs to go to a mall or a restaurant.

This remote education wasn’t supposed to be a long-term thing. But neither was this coronavirus.

Thirty or forty years ago, in-school learning wasn’t an option for kids like my daughter. People with severe autism or developmental disabilities stayed home with their parents or were institutionalized. Their full potential was never realized. They lived their lives unhappy, frustrated and isolated, as did their parents.

Then came a movement where parents pushed to make society aware that their children were intelligent and capable, and could be productive members of society if given the right tools and teachers. The kids were taught behavior management and positive reinforcement, life and work skills. They were given respect and opportunity. And they thrived.

And yet here we are again, our children homebound, acting out and regressing, instead of thriving and progressing. Days have turned into months, and if we don’t start getting our special kids back to some kind of normal, those months will turn into years. All the progress so many autism parents have fought so hard for will be lost.

That’s not to say that stay-at-home has been all bad for our families. We have learned that our kids are smarter, stronger and more capable than we ever thought possible – and we’ve learned the same thing about ourselves. My daughter and I have discovered the joy and peace of long walks together, holding hands and people-watching and cherishing every breath of fresh air.

Personally, I’m handling this better than I ever thought I would. Perhaps that’s because years ago, I came to the conclusion that being an autism mom gave me superpowers to handle anything life threw my way. Even the coronavirus.

Other people I know have managed to count their blessings in all this. They’re cooking more than ever, spending more quality time with their families, getting projects done around the house. They’ve learned to appreciate the simple things just a little bit more.

We’ve learned that in many cases, people who need to work from home can do the same job they do in the office, from their living rooms. We’ve learned that e-commerce can be convenient and safe. We’ve learned that government officials are very often winging it and must change course or direction as they learn something new.

For the special needs population, there is no easy solution. Here in New Jersey, for example, the state guidelines are difficult to interpret. Take this excerpt:

“School staff and visitors are required to wear face coverings unless doing so would inhibit the individual’s health or the individual is under two years of age. Students are strongly encouraged to wear face coverings and are required to do so when social distancing cannot be maintained, unless doing so would inhibit the student’s health. It is also necessary to acknowledge that enforcing the use of face coverings may be impractical for young children or individuals with disabilities.’’

What does that mean? It’s impractical, so it’s not a requirement? It’s impractical, so special needs kids can’t go back to school?

I know of very few “normal” kids, let alone “special” kids, who will wear a mask all day, or keep socially distant, or wash and sanitize their hands every time they touch anything. We have been working on this with my daughter for weeks and she is doing awesome. But by awesome, I mean she will leave her mask on for five to 10 minutes at a time. With continued work, maybe we’ll get to 15 minutes. Or even 30. Maybe we’ll get her to wear it over her nose.

There is no easy answer. I don’t envy our elected leaders or our school superintendents. No matter what they decide, there will be critics. No matter what they do, there will be coronavirus cases.

Schools are essential for special-needs learning, but they’re also essential for special-needs living. Many parents can’t work if their children aren’t in school full time. Other parents who don’t work use the time their kids are at school to recharge and refresh. Without that, they’re crumbling.

I am a parent, a journalist and a school board member. I have looked at this from every possible angle. There is no foolproof solution. What there is, is a population who needs in-person school. Every day they are home, they are at risk of regression.

The coronavirus is not going away anytime soon. No matter when our kids go back to school, there are going to be cases of coronavirus there. There are going to be cases once we return to the office, once restaurants reopen. It is scary for everyone, and downright terrifying for us parents whose kids have no concept of danger or hygiene or social distance.

For those kids who can adapt to remote learning, awesome. But for those who need more, like my daughter, time is of the essence.

During this epidemic, lessons have been learned. We have to take precautions. We have to be a safer, cleaner, more careful society. We have to protect our kids, our teachers, ourselves. We have to encourage our kids to wear masks and to wash their hands often. We have to keep trying to make them understand.

At the same time, we have got to get back to living.