An Open Letter to Parents of Children with Autism During COVID-19

I am the mother of three high school boys, all with different flavors of autism and anxiety. We live in Seattle, the epicenter for the United States of the novel coronavirus pandemic sweeping the world. We are a few weeks ahead of the rest of the country when it comes to the impact of the virus on the day to day life and attempts to slow its spread. But we are right there with you when it comes to the anxiety, questioning, and yes, panic buying.  My own mindset is one of calm. As a parent, you can’t panic. You do not have that luxury, or your kids will join you and amplify. Hopefully, our experience from Seattle can be of some help to other parents as the whole nation begins to face indefinite school closures.

Talking about COVID-19
As our boys’ lives and routines are disrupted, their natural inclination toward anxiety has the potential to escalate. How we share and explain what is going on can go a long way toward managing the anxiety.

First, we explained to our boys that they are NOT in the group of people most vulnerable to the virus. They may get it, but it would likely feel like the flu. This is something they had experienced before and could understand. We explained that we would not be visiting grandparents or other friends who have compromised immune systems. We have not played videos, but we have heard that this has helped other families to explain the topic to their children.Managing exposure to news and media can be tricky. We have been keeping the boys informed by watching the news.  We look at it as a historic event they are watching unfold but realize that not everyone can handle this level of information. Making things as normal as possible is the goal. That works in our situation. But no two individuals with autism are the same. For some of my friends, they have decided that less information is actually better. One of them has chosen to simply tell her son that too many teachers at school are sick right now, so they need to work from home. She decided that any suggestion that he would go back to school “when it’s safe” implies that school is potentially an unsafe place, leading to further problems down the road. Everyone will have to decide for themselves what is right based on their own children’s’ ability to process the information.

Child Writing

Maintaining Structure and Routine
With the structure of the school days gone, it is more important than ever to develop structure and routines at home. To the degree possible, we keep the routines they already expect. We find great comfort in our religious beliefs. Our sons are used to morning seminary, so we have continued that at home. We have our daily scripture reading, which doesn’t change. Schedules are very calming for my children. Like many other children with autism, they are not very flexible, so preparing them ahead of time for changes in routine is essential.

In addition to maintaining our old routines, we’ve built in new routines, especially around school and study time. Some parents find that written schedules are beneficial, creating visible blocks of time for certain activities such as cooking, eating, exercise, reading, and homework.

Making Adjustments
In addition to lifestyle adjustments to reduce anxiety, the actual task of educating requires adjustments and a bit of creativity. Reach out to homeschool groups and homeschool support websites for some good ideas. Take time to find educational opportunities that might not be in the usual lesson plan. PE might be biking together. Art class might be a virtual tour of a museum. Art might be watching YouTube instructionals and trying it together. Below are resources with many companies and organizations offering free subscriptions or learning resources. (Click Here)

Helping Them Out of the Maze
The advantage of online/home-based schooling is that that teacher can be “the bad guy,” allowing us to be free to empathize and be supportive by being right alongside them in their experience.

I use the image of a hedge maze. If your child is inside this maze, it doesn’t matter how much you explain it while on a ladder looking in from the outside. In fact, the more you instruct, telling them where to where to turn left and turn right to emerge, with your own increasing frustration and escalation, the more frustrated and dug in they will become until they give up.

How much better would it be if you can come down from the ladder and go into the maze with them to lead them out? I have been known to go under a front table at an award meeting because that’s where my over-stimulated boy was. I was there because that is where he was in his maze. I could have hauled him out. I could have pleaded or insisted, but in fact, I had to go into his world until he saw me there and calmed himself. Go where your child with autism is and help guide him through the experience. You know your child the best.

We are all in a bit of a maze right now. In this unprecedented time, no one has yet seen where the exit to the maze is. Just like we go into the maze with our children, we can all be there together. And together we’re going to find our way out. And for those of us who practice a faith, we believe that there is a power greater than us who can come into the maze with us and help lead us out.

From our family in Seattle, we are praying for yours across the country.

Wendy Kay Donnahoo
Seattle, Washington

ADDITIONAL RESOURCES:

How to Handle School Closures and Services with Your Child with Autism (Autism Speaks)
COVID-19 School Closure Resources for Families of Students with Disabilities (Arlington Schools) (Arlington Public Schools)
Educational Companies Offering Free Subscriptions (Kids Activities.com)
Virtual Tours of Museums and Historic Sites (Google Arts and Culture)
Scholastic Learn at Home (Scholastic Magazines)

Blog written by Wendy Kay Donnahoo and Shira Firestone

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