Autism: A New Experience in Quarantine

autism quarantine

On Sunday, March 15, 2020, our world started to close in. North Dakota’s governor announced a statewide closure of all schools due to the COVID-19 pandemic. All residents were urged to go into “Quarantine” and abide by strict social distancing measures.

Knowing what was happening throughout the country, I presumed we would be in Quarantine for a month or so. My husband told me, “Trish, they’re not going back to school this year.” I laughed and laughed, and told him to go take out the recycling.

By Tuesday I was sobbing in my shower. While almost every other parent in America was feeling the effects of this pandemic, my life was compounded by several factors – my husband is a physician, I have one vulnerable child, and two special needs children. My life was unraveling, bit by bit, and I had come to realize my husband was right (that might have been the most unnerving thing of all {insert laughing emoji}).

Autism & Quarantine

My 9-year-old son has autism. He thrives on consistency, routine, and structure. School is incredibly difficult for him. Sam is not a savant; in fact, his math skills are at the level of a kindergartner. His team at school consists of a gen ed teacher, special education teacher, two paras, and an occupational therapist. His entire world was taken away and he couldn’t understand what was happening.

In a day, I became a teacher, a therapist, a paraprofessional, an occupational therapist, and so much more.

Sam’s autism has caused our family to be somewhat used to social isolation. But what pained me the most was seeing the social gains Sam had made in the past few months of school be ripped away. If he did ask to go to school, it was to see his classroom friends – a handful of kids who had taken to helping Sam and calming him down during his ever-looming meltdowns. Friends can’t be replaced, and for a kid who really doesn’t have friends… my heart broke as I realized none of them would be calling him to check in and see how he was doing.

Looking Back

Since hindsight is 2020 (don’t get me started on the irony there), here is what I would have done differently for Sam:

  1. Said “screw it” to actual learning. It wasn’t going to happen regardless, so just make it a formality and bow out early.
  2. Advocate for the social piece of his IEP to be met. In my perfect world, this would include reaching out to the parents of the kids who were super kind to Sam and ask if they would do weekly Zoom calls with him. Sam doesn’t have friends, but he does have kids at school who look out for him. I would have loved for them to stay connected.
  3. Get on a waitlist for ABA (Applied Behavior Analysis) therapy immediately. When we moved to Fargo, we never found a good fit for an ABA therapist. Sam actually was doing quite well, so we decided to quit and take one thing off our plate. The repercussions from a global pandemic were never on my radar. It would have been so helpful to have a point person to talk to about his autism-related behaviors, as he is a different kid at home surrounded by his siblings and parents.

We are at a point where we have been socializing more and seeing friends and family. It took two weeks for Sam to willingly leave our house without sobbing. It wasn’t anxiety because of the pandemic; he had become used to his new routine of being in the house. My only goal right now is for him to be somewhat reintegrated back into society without further damage to our family structure and his mental state.

Return to School 

As we look to the fall and the potential return to our school, I have absolutely no idea what is right. Getting Sam back to school was the only goal I had when in-person school was canceled. My two “typical” kids could continue at home, I thought. But Sam had to return. However, as I begin to think about what a return to school could look like with social distancing measures still in place, and a likely mask requirement, will it be worth it? Will he continue to regress? How will he socialize, my most important goal, if he can’t be close to other kids? If he runs away out of frustration (as has happened several times), can a teacher stop him? Will the teachers and staff be protected? How?

2020 has been, and will be, one of the most difficult years of our life. I’m hopeful there are other families and professionals out there who are also going through every possible scenario and pounding the pavement advocating for whatever we need to advocate for. But at this point…. I don’t know what that is.

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Trisha was born and raised in Fargo. After marrying her high school sweetheart they moved to Omaha, NE where they spent the next decade. Finally back in their hometown, Trisha and her husband Adam are raising four kids with big personalities. Twins Sam and Jack were born in 2010 at 28 weeks, thrusting Trisha and her husband into the world of special needs parenting. A few years later, in 2012, Adam and Trisha welcomed son Eli. Not content with stopping when things seemed easy, they welcomed daughter Claire into their family in 2015. Claire was a surprise for many reasons, but the biggest of all came at her birth when they were told she had Down Syndrome and a heart defect. Trisha is fortunate enough to be a stay-at-home-mom, and spends most of her “free time” advocating for special needs and inclusion, going to various and plentiful doctors appointments, volunteering for BIO Girls, and meeting her caffeine limit by about 9:00 a.m. every day. She deals with her crazy life best with sarcasm and has found a creative outlet through her blog. You can follow her on Instagram.

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