When the coronavirus closures and stay-home orders were launched in our state, my daughter Audrey suddenly lost access to all of her preferred social and community activities. Her life typically revolves around adaptive swim lessons in community center pools, meals with family at her favorite restaurants, outings to the grocery store and to local playgrounds with sturdy, adult-sized swings that let her fly. She finished school last year and was beginning a search for a supported job or volunteer opportunity, when the virus hit and put everything on pause.
All of these activities are important to her, not just for themselves, but in how they create predictability and structure in her life. Audrey’s communication abilities are limited. She’s able to express requests for her preferred activities, and she understands the flow of the week and months. Having a calendar to look at that’s filled with a familiar, reliable list of upcoming outings and events is one of the key things that helps her feel safe and in control of her life. Since mid-March, the calendar on her wall has been empty. The situation we’re living in right now is causing anxiety for everyone; for autistic people like Audrey, with very significant communication delays and a high reliance on routine to keep themselves together, it’s unfathomably stressful.
We in her family use every tool we have to try to talk with Audrey about all this. We tell her that her favorite places are closed “because people are getting sick” and that they will open again “someday.” I give words to what I can only guess her feelings are – since her language ability doesn’t yet encompass emotions, I tell her this is frustrating and sad, that maybe she’s feeling scared. We have no idea what she understands when we talk to her like this. I’ve been talking to Audrey without knowing what she understands for 21 years.
There are many people with severe autism and intellectual or developmental disability, many families who love them, who are struggling with this right now. How do we help our loved ones cope when they may not have the language or intellectual ability to process what’s happening in even a rudimentary way? How do we help them feel safe and in control, when beloved routines may have been taken away, indefinitely? Even as things open up again with new restrictions and rules, how do we help them understand and comply so that they can get out and enjoy the community again? When their stress levels peak, how do we prevent the frightening self-injurious behaviors they may barely keep in check in normal times? And, how do we take care of ourselves, while we “stay home and stay safe” with children who need extremely high levels of supervision and assistance, 24 hours a day?
This is the part where I would like to have a list of magical suggestions or resources! But the best I can do is offer three things to remember while we continue to love and support our autistic kids.
First, it’s important in and of itself to acknowledge that these are the challenges families like mine are facing. We need to be able to look out into our community and know that there are others who truly understand our experience and the sometimes unknowable experiences of our children. You are not alone.
Second, when it comes to helping our kids through these anxiety-provoking times, embrace whatever works for you and your child. Expectations are morphing and softening in many households right now, as families feel their way towards keeping everyone in an emotionally healthy space, all together. Don’t be afraid to set aside rules, lessons or goals that were in place before COVID, if this helps relieve your child’s stress – or the stress in your home overall.
And last but not least – apply the oxygen mask rule and take care of yourself first. Our children with severe autism are strong people, who have spent their entire lives essentially learning to cope with an overwhelming, unpredictable world. They will get through this. You, parents and caregivers, are working very hard. You’ve been working hard for a long time. I see you. I honor you. You are worthy of the same compassion and care that you give others. If that feels hard, please check out this blog post by Lynn Vigo right now to shift your thinking toward self-compassion and self-care.
Our Guest author Joy Gehner is mother to Audrey, a 21-year-old woman with severe autism and DD. She works at Seattle Children’s on the Patient & Family Partnerships team, and is also a writer in her “spare” time; some of her work can be found at whirlyjoy.com
“You, parents and caregivers, are working very hard. You’ve been working hard for a long time. I see you. I honor you. You are worthy of the same compassion and care that you give others.”