Autism Spectrum Disorder: A Mother’s Call to Action
It should have been a call forgotten without hesitation. The daycare director called my office to let me know my 18-month-old daughter, Lilly, had eaten sand on the playground. She just wanted to let me know. I mentioned the call to a coworker, and she acted like it wasn’t unusual at all. “Kids test out the world one bite at a time,” I recall her saying. Yet, I didn’t forget the call and probably never will. To me, that courtesy call represents the point in time when I knew my beautiful, funny, heaven-sent child was autistic. I can mark time based on that “call.”
Lilly soon ventured beyond playground sand, eating leaves, sticks, paper. One time, she ate a piece of curly ribbon that came with a gift bag. Our pediatrician had her tested for lead poisoning, iron and zinc deficiency, even ordered a tumor marker panel to rule out cancer, which can sometimes coincide with pica, a condition in which a person is compelled to eat non-food items.
The other signs of autism
I’d noticed some funny = weird quirks about her long before she ate sand that day. There was the odd crying she’d do at times. Completely inconsolable crying that we could not satisfy. I remember my younger sister, who was babysitting Lilly, calling me in the middle of the day to see if I’d come home. She’d tried everything, but Lilly wouldn’t stop crying. I rushed home from my grants office job and found both my sister and Lilly sitting on the floor, sobbing.
“If we can’t see a child with autism as capable, interesting and valuable, no amount of education or therapy we layer on top is going to matter.” – Ellen Notbohm
Sometimes when I held her, she’d feel rigid, her limbs going stiff. My husband joked and said she was “strong-arming him” when she didn’t want to be that close. That’s not to say she didn’t like to be held. Quite the contrary. She clung to me at times like I was a lifeline.
Lilly never crawled on her knees, preferring to scoot sitting upright. She wore holes in her tights and leggings from scooting, even wore a hole in the seat of her jeans. I was so glad when she started walking because although her scooting was effective, it generated stares in public.
My husband and I went about parenting, seeking answers to various oddities, throwing this treatment at her or that promising new therapy. We tried everything, every therapy: music, play, listening and vitamins. We took her to specialist after specialist – my secret hope was to disprove what everyone pretty much already knew. It was the Big A.
Autism awareness – today and everyday
Lilly is now 16, and depending on the day, falls along the spectrum at about moderate-to-high functioning – whatever that means. Autism is a strange condition that I hope I never fully understand. In one instance, she’s completely lucid, and highly focused, trying to explain to me how to use the cable remote to get Netflix. The next she’s throwing her hairbrush at the dog and crying that she’ll never get married. My husband says some of it is purely being 16.
The education system has been an especially difficult process. It takes a special teacher to tap in to these kids and help them reach their potential. I like what writer and columnist Ellen Notbohm has said, “If we can’t see a child with autism as capable, interesting and valuable, no amount of education or therapy we layer on top is going to matter.”
Like most, we finally landed on Applied Behavior Analysis (ABA). Our ABA therapist is like family. She spends roughly five hours a week working with Lilly. Treatment has changed course over the years, going from play-based to school-focused, and treatment playing will soon include some job-skills training. Lilly wants to be a fashion designer but realizes she must learn to sew. This summer, she is volunteering at the SPCA where I’m trying to promote her love of animals – dogs especially. Dogs seemed to “get” her and are drawn to her.
When Autism Awareness Day rolls around each year, we kind of shrug and say its autism awareness day in our house every day.