April marks Autism Awareness Month. As our family enters our third week of quarantine, I’ve never been more aware that I have a child with autism. This unmitigated time together has magnified our personalities, our quirks, our likes and dislikes, as well as ‘our’ challenges with voice modulation, self regulation and transition. Above all it holds a glaring spotlight on the role and power autism plays in our life.
Our oldest daughter has autism
The oldest of our four children, Erin,18, has an autism spectrum disorder, which causes significant cognitive, speech, and motor impairments, behavioral challenges and epilepsy. The first week of quarantine I started to write an essay on How my special needs daughter prepared me for this pandemic.
I’ve stopped writing that one. I take it back. Nothing any of us has ever experienced could prepare us for this particular storm. A friend whose 16-year-old son with autism is climbing the walls and engaging in self injurious behavior just texted: “How are we going to get through this?” I don’t know what to say to her.
As healthcare workers across the country risk their lives to save lives and groups of local moms band together to equip them with meals and face masks, it’s all I can do to keep my daughter quiet and from acting out all of our frustrations while her brothers ‘attend’ school on line. When my sons first learned that they would be home schooling for an unforeseeable future, their first and only question was how this could work with Erin at home. They know well the disruption and uncertainty that life with autism brings to our home and our family.
I feel for them and understand their anxiety as intimately as I understand Erin’s complete and utter confusion at this predicament.
My daughter doesn’t understand any of this
Erin does not understand about the outbreak. She does not understand why her school is closed. The first day it was cancelled and we were not sure where this was headed, I explained that her school had to be cleaned to keep everyone healthy. As that day rolled into two and then more, I explained that people all around New York are getting sick and her teachers want her to stay home so she will not get sick and can hopefully go back to school again soon.
“When?” she asks. I don’t have an answer.
Like parents all over the country tasked with navigating this uncharted terrain, I am getting a crash course on explaining the inexplicable to my children while trying to comfort them at the same time. As foreign as the whole mess is, though I can’t help but feel like I’ve been here before.
As my sons lament the loss of their spring sports seasons, I find myself repeating the words special needs parents have told themselves and their children many times over: “I know this is not ideal. This is not what we hoped for, but there are not a lot of alternatives – so let’s get on with it.” My boys have heard it before. It helps and it doesn’t.
Like everyone else we scramble to regain our footing, to rewrite routines on which we all so desperately rely. Like everyone else, we want to get back to normal. But our normal is not all that normal.
Erin has always required us to record a daily schedule to get through her days. Now we are forced to dig a little deeper and to consider what are the things we look forward to – what keeps us going?
Breakfast, lunch and dinner figure prominently, as do walks to town with her service dog, Pablo. Erin’s greatest joy is the library. In its absence, angel hearted friends have left books and ‘surprises’ on their porches and front steps for her to discover along the way. These are the touchstones and bright lights we live for today. I could not be more grateful. Autism has taught me a great deal about gratitude and how it sustains.
Autism has taught us to appreciate the small things
Following Erin’s lead we celebrate sunny days. Erin lives for holidays. On our last trip to CVS, as customers darted around us in face masks, clutching toilet paper and cleaning supplies, Erin debated the merits of a green or yellow bunny eared head band. Thrilled by the bright displays of Cadbury Eggs and marshmallow Peeps, she was oblivious to the hysteria swirling around us. She returned home clutching a blue easter basket and wearing a most carefully chosen yellow head band. Her brothers could not help but smile.
While autism could never have prepared me for this global crisis, it has taught us all to appreciate the people and moments that make you smile, to realize that they do not last forever and to understand that nothing – good or bad- ever does.
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