I have an affinity for affirmations. Words, quotes, lyrics–I gather them like precious jewels. Sometimes they are words of wisdom and guidance, sometimes questions to focus on throughout my day. One of my favorites is a prompt that was hastily written on a stray sticky note, scavenged from the bottom of a junk drawer and dulled to a mustard yellow with age.
“What is one thing you want others to know about autism and one thing autism has taught you about life/yourself?”
As a special needs mother, I am not above using everything at my advantage to advocate for my child and as such was planning a column answering those two questions in observance of April being Autism Awareness month. Glenn will have to forgive me though, because in the same way that COVID-19 and social distancing practices have shifted the world around us, they have shifted this column from its original form as well.
People keep asking how we (the O’Dell’s) are fairing amid the pandemic. In reality, our lives have not changed much; both Corey and I are essential workers and my cousin cares for the boys (in addition to her college courses), Our day-to-day routines have not changed much, and the pandemic really hasn’t changed them on a larger scale either.
The truth is as a special needs family we already live in a world of social distancing, some from necessity and some the by-product of our lives. In conjunction with autism Glenn has sensory processing disorder, which means that his brain interprets and integrates environmental stimuli gathered from the senses–touch, sight, hearing, smell, taste and space (proprioception)–differently. His sensory integration issues combined with the fact that he is not functionally verbal can lead to meltdowns, especially in new environments. Hence, we practice social distancing from necessity. We make sure that we never go places like restaurants, or movies, or events or even the grocery store during peak times, when there are lots of people.
Glenn has been in multiple therapies since he was two. While other moms of young children were meeting and bonding, forming friendships that would extend to their children, we were sitting in hospital waiting rooms or playing with in-home therapists in my mother-in-laws living room. He is not functionally verbal, and he doesn’t easily interact with anyone around him, let-alone the children in his class. He doesn’t have friends the way other preschoolers do. We have never been invited on a play date; there were no birthday parties or get-togethers to attend. Social distancing is a by-product of our lives.
Filling in as a teacher (therapist) is nothing new. Every moment of our family life is spent working on social interaction and activities of daily living with Glenn, teaching him awareness, promoting speech. We have never had a single family outing that wasn’t also serving as a way to work on some not-yet-exhibited skill. Even Archie takes on the role for teacher for his brother, rephrasing questions in a way that Glenn will understand, patiently coercing him to engage and making sure everyone around him does the same.
We already live in a continuous state of hyper-vigilance and the fear that coincides with it. Fear is a constant companion in our lives. I could write a million columns regarding my fears for my child but the most incessant is our insurance denying G’s therapies. I tense every time G’s therapists call, expecting them to tell me his services have been denied. This is not an unfounded fear. Its happened before and I fully expect it will happen again, so much so that I keep a direct number to the representative assigned to assist me last time (after months of daily, increasingly-irate calls) on my person at all time. Our lives as a special-needs family are not uncommon in any of these aspects.
Hands down, the hardest thing about having an autistic child is getting him access to the things he needs. The things that make me want to scream and cry and beat-my-head against a wall have nothing to do with my child and everything to do with the broken systems that prevent him, and other disabled people (people who often can not advocate for themselves) from attaining the services/equipment/care that they need. I think there are a lot of people experiencing that same anger right now.
I think that one potentially good thing about this pandemic is that it is shining a glaring light on the brokenness of systems across the board. The pandemic hasn’t made me worried for my family members and friends who work in healthcare. I am worried about them every single day. Exposure to disease, under-staffing, ridiculous patient-to-care-giver ratios–none of these things are new. The same goes for teachers, small business owners and other essential and non-essential workers.
It baffled me when people kept asking how I was doing amid the pandemic and it baffled me as to why they seemed so unsteady themselves. Then it struck me: we (special needs families) have already had our worlds up-heaved. We were thrust into the wilderness long before this pandemic. The thing about having your entire life drastically change course, without notice, is that it strips away the false sense of security that the world of men (these systems) so desperately tries to project. Possibly the most important things that autism has taught me is to rely on my own wings and not on the environment around me.
A lot of people are afraid right now and there are a lot of reasons to be afraid. A lot of people are angry right now and there are a lot of reasons to be angry. I would advise those feeling fear and anger to take a page from the special needs parenting book and place your faith back into your own wings. The problem with putting too much belief into systems is that it gives away your power and makes you complacent. You begin not only to not question the flaws in systems, you stop seeing them all together and nothing that is unseen can be fixed. Channel your fear and your anger (share your first-hand accounts, write-letters to the editor, call your legislators) and use them to everyone’s advantage.