Issues I Discovered About Autism Parenting Through the Pandemic – SheKnows
When I had my daughter in late November 2019, the nurses in the hospital were whispering about a new disease called COVID-19 that was sweeping across China. Three months later everything was locked. Like everyone else, I wondered how long this could really last – surely it was only a matter of time before they found a cure or the disease died out and we could all go back to normal? We held our babies tighter, but when the news trickled in from Italy and New York and the grim reality of rising numbers and horrific deaths was not just overseas but in our country, in our state, in our city – I panicked.
It’s the anniversary of the end of ‘normal’
My 4-year-old son Trip is non-verbal and has autism, and I can’t even describe the fear that set in when I discovered that if Trip got COVID, very likely he would feel like he was choking – and so would he couldn’t tell me he couldn’t breathe. So we went into lockdown mode, disinfected food, saw no one, went nowhere, but as the year progressed I realized that my son was failing and thriving in surprising ways. So here’s what I learned about raising an autistic child during a global pandemic.
Distance learning blows.
As schools moved further afield, I became painfully aware of how far distance learning was failing for children with special needs like mine. Aside from losing the therapy resources he got at school, there was no way Trip could sit still and stare at a screen for hours every day. His poor teacher, who did her best to include Trip, watched me chase him around the house, trying to bribe him, begging him, making him only be on the Zoom call. After the first day, he tried to throw my laptop down the stairs. Every time he saw a laptop or tablet, he started to cry. He was angry and irritable, and even after distance learning was over for today, he was moody and barely slept.
After the first week ended with his speech therapist spending 45 minutes watching me try to get Trip to look at the screen (while he locked my newborn, tried the therapists’ directions about trips Hearing the baby’s screaming and crying, and all of my son’s little toys from my daughter’s mouth) I asked his speech therapist with tears in my eyes: “How do people do this ?!” She shook her head and said, “Maybe we do more harm than good. “
I was relieved. Admitting that Trip had none of this and just made everyone cry (me, him, the baby) gave me permission to say, “Fuck you, Zoom!” And focus on things that I could change. After making my son’s mental health a priority, he was happier and I was happier.
We live on a farm in Connecticut so we were lucky enough not to have to change too much to be completely isolated in lockdown. What I didn’t realize was how many places outside of school I had to rely on for Trip to burn off all his energy: swimming at the local YMCA, playing in city playgrounds, weekly gymnastics classes. Suddenly the playgrounds were wrapped in yellow tape, the YMCA, gymnastics. and soft gyms had all closed their doors and I googled “where can my child play”. Trip had burned himself through all of his sensory toys in a matter of days. I was building a storm of sensory crafts and he still wasn’t getting the input he needed. While some people started baking, buying a goat, or building an indoor slide for their kids, I searched online for an answer to the question, “How do other parents with special needs survive during this madness?”
Obviously there was no answer. But I found a few things that made life a little easier. We spent 98 percent of the time outside. We wandered through our little town, wandered in the forest until the sun went down (we got lost), stumbled across a river that became our new favorite hangout (we got lost) and visited what it felt like every farm in the border triangle . State Area (shocker, we got lost a few times). Being outside seemed like the only option, and it turned out to be the best.
When winter came and that wasn’t an option (my kid hates the cold) I found ways to bring the outside inside, like this indoor swing from B4 Adventure that turns a door into a classic swing, a sensory swing, or a ring transforms transform bar. Grab a pillow to slide your bum down the stairs and you have a full-fledged swing in your house.
Not all classrooms have four walls.
Every month that schools stayed out of the way, I sank deeper and deeper into my mother’s guilt that I could do something else to teach Trip. There has to be something more, something better, something I didn’t do. I was exhausted from the constant feeling of abandoning my son and the constant fear that he or I would get sick or die. He didn’t get therapy at school, no therapists came to our home (because of a pandemic), and I felt like my miserable attempts to study classes at home were a joke.
But here’s the thing. Not all classrooms have four walls. Trip took up drawing during the lockdown, something he had never shown interest in before. He learned to put his snacks in bowls and on plates instead of tipping the bag onto the nearest surface. He learned to take a fork out of the kitchen drawer to eat and to get his own glass of water. He learned to hug his sister and roll down hills. He learned which stones are best to stack and stacked up all over our yard. He’s learned to work in the garden and now if he goes to sleep at night I’ll put him in, say good night, and go away (a huge win). He learned so much during the lockdown, and I learned to let go of the nagging mother guilt that convinced me that I was doing a terrible job.
One thing that came into focus with the pandemic was food. Trip is an incredibly picky eater and only has a handful of things he will eat. And not that I really don’t like it, but-if-the-choice-is-eat-or-starve-I-guess-I-guess-I’ll-eat-it-as well. He’d rather starve to death. But when the grocery shelves emptied and the few items he eats disappeared, we called countless grocery stores, tried to find the items online, even drove across state lines to find them. One such item is Yummy branded Whole Grain Chicken Fries. Just this brand. I have no idea how he knows this, we’ve tried every chicken roast out there and even put a different brand in the Yummy branded box to try to outsmart Trip – to no avail. (Somehow, insane, even though they’re all the same, he knows.) One day, about six months after the lockdown, we ran out of french fries, searched all local stores, tried to find them online, even contacted them directly to the brand and asked them to tell me where to find it. By sheer luck, I happened upon a store that said they were selling them. I ran (yes, actually sprinted) down the freezer aisle, and when I found the empty shelf where it should be, I burst into tears. Nothing says autism education like crying over chicken in a grocery store with frozen foods. The cutest woman got behind me and said she totally understood – her daughter has Down syndrome and only eats peanut butter and jelly or mac and cheese. She told me to reach out to a Facebook group for parents of special needs children as they may have some pointers.
“Don’t be afraid to ask for help!” she called over her shoulder as she walked away, and that rings in my head every time I fight.
I reached out to the Facebook group that suggested them and they had leads. I can’t tell you how much I wish I had asked for help sooner. Everyone has a community, and if this pandemic has taught me anything, it’s that we’re all in it together. Please help. Get it when you need it. Don’t be afraid to show yourself out there – you’ll be so glad you did.
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