Parents raising children on the autism spectrum know how limited their child's food repertoire can be and how challenging it is to introduce a "new" food. So, it will come as no surprise that it took 2 years to get my son to eat a peanut butter and jelly sandwich and for many years, that sandwich would turn out to be one of only four foods he would eat.
I dreamt of bringing home a pizza or sharing an ice cream, but those were my dreams, not his. By the time he turned 14, he only ate nuggets, cheerios, bananas, turkey, bread, strawberry yogurt with no chunks and peanuts.
My son is a math guy, so I thought it would be meaningful to calculate the actual number of PB&J's eaten. By sixth grade, we were around 3,285, give or take.
The saddest piece of this puzzle for me was the limited foods were emblematic of what I feared would be a limited life. His vehement disdain of new foods was echoed in his rejection of any novel experience. Add to that trying to introduce self-care skills and, "Hold on to your hat".
Here's what I'm talking about:
I flossed his teeth and clipped his nails through middle school while he screamed and cried, "I'll NEVER be able to do this on my own!"
The mention of flying or even going to an airport created absolute hysteria...once he got so escalated, he passed out. I think he may have had a seizure.
Going to live performances, even enchanting shows like Disney on Ice, or The Christmas Show at Radio City Music Hall were traumatic. He wailed and begged to leave, oblivious to how disruptive his yelling was to those people staring at us with murder in their eyes.
But, writing...writing was the worst. He was absolutely convinced that he could not write. When I discussed this with experts in the field of autism and developmental delays, and other moms I'd chat with in therapy waiting rooms, I was always told the same thing, "Don't fight that battle."
I started to think of myself as a "Warrior" mom. I cannot recall the movie, but I do remember a character facing a death defying experience saying, "Never surrender, never give up". That became my mantra.
I also adopted a theme song that I would play when I was feeling particularly defeated. I even printed the lyrics and kept them crumpled in my purse. It was You Gotta Be, by Des'ree. Those powerful words...
You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger...All I know, all I know, love will save the day...
There's nothing like a good theme song to get you through an impossible situation.
The mantra and the theme song helped me, but what helped my son was my understanding of how to use the principles of ABA therapy, A.K.A, Applied Behavioral Analysis
Of course, each battle required a variety of strategies that evolved as his needs changed. What I did to get him on an airplane was quite different than how I approached getting him through a live performance, flossing his teeth and the nightmare of getting him to write.
But, the overall approach was the same. Those basic ABA principals of:
breaking activities down into their smallest components
repeating the instruction with a lot of encouragement and positive energy
reinforcement and reward
Also, patience and time. Lots and lots of patience and time.
I am not a behavior analyst. I am a mom and an educator who learned that applying these principles was the way through to my son. It still is.
It absolutely works, but it takes patience and time to see results.
5,085 PB&J's later, I'm still helping him breakdown tasks that seem monumental into their smallest step by step components and he welcomes the process.
I'm still repeating the how to and connecting the dots for him. I'm still teaching him, at 20, to do it for himself.
I believe in him and reinforce all wins, big and small. I redirect when he's going down, what we call "the rabbit hole".
Here's the best part. He has a long list of foods that he eats and is willing to at least taste something new. He is a writer with a unique voice that deserves to be heard. He brushes, flosses and clips like a pro. We have flown to many exciting places together and he has become a "Theatre Geek".
Yesterday he made himself a PB&J for lunch...5,086 strong.
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