Editor’s note: Northeast Arc recently held an essay contest in which community members were asked to write about their experiences living with, learning from, and loving someone with autism during a pandemic.
“One thing living through this pandemic has proved is that it can be very isolating,” said Gloria Ricardi Castillo, director of Northeast Arc’s Autism Support Center. “What I think these essays show is that isolation is the norm for people with disabilities and it is important that we remember this as we come out of it. We must all work together to make sure people with disabilities are welcomed and included in our communities. I know society will be a better place if we do.”
The Salem News is proud to share the winning essays.
Two Children, One Pandemic
I have two children who are both autistic, a second grader and a toddler. I also have a degree in theater, which I used every day at home starting last March. I acted the part of a woman who wasn’t overwhelmed, scared, and exhausted.
The sudden closure of schools, programs, and canceling of home help was a difficult blow. While I feel very competent, there was no reprieve. No light at the end of the tunnel for a break. And this was scary — but I didn’t want my kids to feel scared. They can’t put emotions on a back burner — fear would consume them. So I trotted out my acting skills. I tried to make COVID funny with the glitter analogy to explain why we were home. I told them that COVID was a germ kind of like glitter. It got everywhere — superfast — and we didn’t want it on us.
Zoom did not work for either of my children. I bought books, puzzles, and crafts to help occupy them. I kept thinking how awful this was — they kept telling me how excited they were to have more “mommy” days. It was grounding in a way. They never lost sight of what mattered. Our family.
Love held us together when fear, anger, frustration, or sadness threatened to consume. My kids are very perceptive. There were times when one would bring me a toy or “lovie” because they thought I needed it. Sometimes they even let me pick the show on PBS kids. That is love.
— Karen Goodno-McGuire, Beverly
My daughter, Julie, initially thought that she had caused the COVID upheaval and that is was her fault or maybe it just came to upset her.
She takes personal responsibility for all difficulties because all her life she had been trying to do things right, but makes so many mistakes when trying to please “normal people.” Anything out of place or routine makes her more anxious.
Her biggest concern was not being able to eat in restaurants because that upset her schedule. She lost her job, PCAs, gym workout, art class, dance and music class, time at Seabrook Senior Center, Special Olympics swimming, and group activities. She lost personal contact with friends, family, and society. She had to go deeper inside which is a place she already spent much of her time.
She determined herself to read and finish books, even those she was not originally interested in and learned a lot of new stuff and became interested in the Holocaust and reading about people who faced great difficulties. She collected CDs and during this whole time determined to repossess every doll and toy she had as a child and managed to amass, through eBay, an extensive collection of things past.
She managed to keep one helper, Susan, who took her out on Mondays while observing all the rules of safety. She received a daily call from another helper, Deb; they made chocolate chip cookies over Facetime. She also became focused on politics through her phone and Facebook and danced in the street on the outcome.
Looking back, it was not so bad, I would say my Julie adapted pretty well.
— Mary Ellen Morris, Amesbury
COVID Living (with Autism in the Family)
Quiet, bored, repeat.
Takeout, leftover, refuse.
Space, room, isolation.
Yawning, abyssal sleep.
Alarm, footfall, doors
Calling from one room,
Hollering from the next
Intimate, irrational, trying
News - terror, progress
Music, guttural, tribal
Spring, hope, heal
— Frank Morris, Amesbury