Autism, Art & Survival

"My art at the Museum" by Kai
Last week was hard. After a lengthy downward turn, my youngest son was placed in a mental health facility to help him cope with an Obsessive Compulsive spiral. In a matter of hours, a deep fear of mine erupted into reality. I watched as my son struggled to maintain his sanity. 

Then he looked at me and said, "My thoughts aren't right, Mom. I need help."

At 4, Kai was originally diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). This category covers a broad range of autistic behaviors that can't easily fit under a singular diagnosis. I was told he might grow out of a large number of his symptoms, which included sensory sensitivity and extreme anxiety. After extensive testing, Kai was eventually diagnosed as having Level 2 Moderate Autism with anxiety and Obsessive Compulsive Disorder components.

Today, Kai is an easy-going teenager at 13. He has language deficits that sometimes make him unintentionally funny. His I.Q. is also average, but others often underestimate him due to his inability to adequately use words to communicate. I was among this group.

Kai was late to speak. Loud noises, crowds, and random smells would set him off into screaming fits. For a long time, I called him "Super Sonic Boom" for his ability to stop traffic with one shriek. He eventually began stringing words together to create his own usual language, a trait that prompted several visits to the pediatrician's office. Over and over, I was assured that the second child is merely late to bloom.

Instead of listening, I had him tested for allergies, which calmed much of his behavior once I removed allergens from his diet. For example, I had no clue he was allergic to apples and strawberries. We gave him both daily in large amounts because he asked for them, not realizing these fruits actually increased his sensory sensitivity and would lead to more screaming tantrums. Food choices play a vital role in managing autism symptoms.

As I researched and pursued professional services, I turned to the arts for help. My oldest son, Sage, had an Asperger's diagnosis that had been greatly alleviated by teaching him to play keyboards. Music, I found, was a soothing presence even when the world made no sense at all to my feisty preschooler. At 16, he now plays piano and keyboards by ear and has created a film.

Kai was quiet, the total opposite of my oldest. He was a calm child unless he was triggered. I sat him down beside me and began his first painting lessons. Within weeks, he was drawing on everything. But I still didn't sense just how much my child suffered until a doctor's visit for routine vaccinations.

Kai was inconsolable after the shots. We returned home to yet another screaming bout of tears that seemed unending. Desperate, I shoved a paper and pencils into his small hands and settled him at the table, then went into the other room to calm my nerves. When I came back, Kai had created a comic strip on the page from scratch. In it, he drew his doctor's visit with incredible detail. He used words he was unable to say. And within a few seconds of reading, I found myself laughing that my son was telling me in this comic that he absolutely hated the doctor and the shots just as much.

Kai understood everything. He just couldn't say it.

From that moment on, I've refused to let anyone tell me what Kai would be capable of doing in his life. I have fought for the care he needs from day 1. I believe as a special needs parent that our children will only go as far as we imagine they will. If we settle for a lowered expectation of who they will become, that standard will become their prison.

In time, I learned Kai is an artistic savant. He is able to mimic any printing font you give him with amazing accuracy. He can produce incredible works of art in five minutes or stick-figure drawings he doodles on for an hour. It's the craft itself that intrigues him. His spacial reasoning and knack for pattern recognition is also genius level.

Most of the time, his OCD manifests as a fixation on time, clocks and trains. These are benign outlets for his OCD that we encourage, such as fixing and making clocks, collecting watches and visiting train museums. We actively discourage the chronic washing, germaphobia, and perfectionism that have arrived with the onset of puberty. These are also the traits that caused his tortured spiral last week. Even so, he drew in the emergency room and during intake to wonder of the staff. Some even asked him to sign works for them.

Art is my son's survival as it is mine. I've mentioned here on these pages my struggles to come to terms with my anger and the complications of a parentless childhood. There are many times on my journey when I wonder if my children came to me because I would try harder as someone who had been a throwaway kid. I've never wanted my children to feel as if they are not loved and welcome in this world.

But survival isn't just about getting by. It's also about getting help. And that's exactly what Kai needed this summer. Last week, he entered the Ridgeview Institute to spend a week working at breaking his OCD spiral. He's been just as easy-going and happy when I've seen him as he is most of the time.

Kai has had other help along the way on his path. We have been fortunate to live in Queens, NY. The Shield Institute in Flushing, New York is largely responsible for getting him verbal in preschool. P.S. 144 is the best public elementary school for special needs children I've ever seen. Achieve Beyond gave my son at home therapy services at a time when I was told we would never be able to afford to get him the help he desperately needed.

We have a stigma in this country regarding mental health. Instead of being proactive, many Americans only acknowledge mental disorders when they are center stage as headlines of horror. Mental illness is also the scapegoat for a pressure cooker society that drives our populace to implode into suicide or explode into mass violence. Our politicians regularly cut funding for the infrastructure and services needed to help our mental disorders before they result in homelessness, incarceration, drug use and an assortment of other symptoms stemming from societal neglect.

For those of you out there in a similar situation, I encourage you to use the arts to reach your children. You may find that the same child every professional told you would never accomplish anything is actually a creative savant hiding in plain sight. I also suggest contacting your local Parent-to-Parent branch. I've networked with this amazing organization both in NYC and GA to help other parents find services. Perhaps they can help your family as well.

So for this week, Kai and I are wondering what is imperative for your own survival. Is there a scenario that you think would crush you if it occurred? For our family, it was in-patient care. For your family, it may be something different. But odds are, the resolution is not as bad as you think.

Just take things one moment at a time and know you will get through this.
Be well on your path. 


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