How I ‘Eliminated the Unnecessary’ for my Child with Special Needs

By guest columnist Kayce Cole 

Hi. I’m Kayce. My husband and I have one son, Sam, who we adopted from Russia when he was 13 months old. Back in February, I found this amazing quote by Hans Hoffman, “…Eliminate the unnecessary so that the necessary may speak.” I loved this idea so much that I chose it for my mantra. Then 2020 laughed in my face.

Our beautiful boy was born 8 weeks early and lived in an orphanage for 11 months before we brought him home. At three years old, he was diagnosed with Fetal Alcohol Syndrome. My husband and I were devastated, but his diagnosis explained Sam’s many unusual behaviors. We learned Sam also had Sensory Processing Dysfunction. Sure enough, when Sam was five, we officially got his ADHD diagnosis and some meds to help him. According to his specialist, Sam’s SPD and ADHD are both severe and significant.

We’ve been eliminating the unnecessary for years. Before we adopted Sam, I eliminated the idea that I had to give birth to become a Mom. When we adopted, we gave up having a child that looks like us. When Sam was diagnosed with FAS, we said goodbye to any hopes of being a “typical” American family.

We eliminated team sports, friends’ birthday parties, parades, fireworks, corn syrup, and anything else that seemed to trigger meltdowns. Red Dye 40, I’m looking at you.

When Sam was in fifth grade, we officially broke-up with public schools and enrolled him in a private school for kids with special needs. Many eliminations were painful, but almost all of them brought a new level of peace to our chaotic home.

By the time 2020 started, I foolishly thought I eliminated everything unnecessary in parenting a special needs child. I chose my new mantra to guide me on a year of personal growth. Per-son-al. I needed some me time. I needed a less complicated phase in life where I could enjoy life’s simple pleasures ALONE. I’d go window shopping and meet a friend for lunch. Perhaps I’d go to the beach, or binge watch Dead to Me on Netflix. Some days I’d drink coffee and wear my pjs all day. “HA! HA!” shrieked the universe.

Enter quarantine. At first, I was secretly joyful. I love being at home. But the perils of isolation soon brought boredom, meltdowns, depression, stress-eating, Netflix on for 24/7, and anxiety.

My son and husband were feeling it too. No more window shopping or real shopping. No ice cream or Starbucks. No movies or parks. And worst of all, no me time. Thanks to distance learning, I quit my job. Even though Sam is 15, he needs constant supervision. He loves gangster rap and recently found omegle.com. It’s a website where you can literally talk to strangers. I spent every minute of the school day watching him like a hawk.

Ironically, each new painful Covid-related elimination eventually brought us more peace. Sam is less anxious. Because we aren’t out in crowds or shopping in busy stores, he’s far less over-stimulated. Once our 30-day quarantine was over, we ventured out into wild unpopulated Florida. We went on swamp walks, and we started talking to each other.

In July, we made the tough decision to eliminate Sam’s private schooling. Due to the uncertainly of Covid, we thought the stability of homeschooling this year would be better in the long-run.

Goodbye alone time. Goodbye fun part-time job. Goodbye sanity.

Getting our homeschooling set up has been rocky, but we’re pressing on. I’ve spent years of going against the grain of conventional parenting wisdom, and now I’m letting go of traditional ideas about education as well. This morning, our school day started at a leisurely 11:00 a.m. with Sam doing his laundry. He made a game of tossing each piece of clothing one by one into the washer. I stood at the ready, armed with Spray and Wash. Back when I had a job and he had school, I wouldn’t have had time to let him live his life on his own pace. Because rushing Sam almost always causes a meltdown, our new relaxed schedule has eliminated a lot of angst.

Last week, I noticed Sam was more edgy and snappy than normal. Again, I revisit my mantra. What else can I eliminate? This time, I looked at how much I control vs. how much Sam controls. Where can I let up on the rules? Where can I give him independence? What freedoms can I give him?

I’m also paying strict attention to the second part of my mantra. What is necessary? In the early 1940s, American Psychologist Abraham Maslow studied successful people like Albert Einstein and Eleanor Roosevelt to find the secret of their success. Maslow then classified human needs and then broke them down into stages. Our most primal needs are at the base of Maslow’s hierarchy: food, water, warmth and rest. When I totally lose it, I haven’t been meeting my basic needs. I ask myself, am I Hungry? Angry? Lonely? Or Tired? If so, I can H.A.L.T. I’m learning that it’s necessary to give myself the same loving care I give my son when he’s hungry, angry, lonely, or tired.

Other things that are necessary include getting fresh sunshine and exercise. For PE, we take our dog on walks along the bay. For health, we study emotions and talk about our feelings. I’m teaching him how to multiply and count money. He’s learned how to apply for a job, and we’re teaching Sam how to drive – in an empty parking lot. Part of our school week includes a therapeutic social skills language group and neuro-feedback.

“Eliminate the unnecessary so that the necessary may speak.” I never thought so many of my pastimes and obligations were unnecessary. I had no idea their elimination, while dreadfully painful would make room for so many necessary things I didn’t know I was missing. Well played 2020. Well played.

`