Watching my son eat a cupcake on his 6th birthday was a special event indeed, not only because of the way in which he ate the cake but also because he actually ate the cake at all.
To say that my boy devoured his cupcake like a shark during a feeding frenzy would only be accurate if “said shark”, while circling a particularly tasty looking hunk of tuna, began sobbing with anticipation because he couldn’t begin eating the tuna soon enough, and if once he actually started eating the tuna he continued to cry while swallowing large bites, barely chewing them, and then finally went into full-on meltdown mode upon finishing the tuna, realizing that the tuna was gone and there was no more yummy tuna goodness left to eat…. Then, yes, you could say my boy ate that cake like a shark – an emotionally expressive shark, a passionately dramatic shark – with salty, shark tears and a runny nose.
Although a stranger may have found this over-the-top display a little surprising and maybe humorously unsettling, for me it was a victory celebration after a year’s worth of feeding therapy.
Like many children with autism, my son has always been highly selective with the foods he is willing to eat. His sensory processing issues make him especially sensitive to texture and appearance, while other food aversions are more practical, given his food allergies, intolerances, and frequent tummy troubles, like pain, constipation, and diarrhea.
Naturally a fear built up in his psyche, the knowledge that some foods do not feel good in his mouth and others do not feel good in his stomach. He narrowed down his feeding repertoire to just a few “safe” foods and ate those same foods day after day after day: oatmeal, chicken nuggets, rice & beans, and Goldfish crackers.
When his staple diet at school was reduced to just Goldfish, we decided a weekly trip to feeding therapy was in order. Over the span of a year, his feeding team, consisting of a psychologist, an occupational therapist, and a board certified behavior analyst (BCBA), gently and methodically re-introduced old favorites he had eliminated like avocado and sweet potato, while coaxing him to try new foods like green beans and cake. The process wasn’t always easy for my boy…or for me, for that matter. But he had become too limited, physically and mentally – it just wasn’t healthy.
While feeding therapy helped expand his diet, it didn’t solve the underlying anxiety that permeates most aspects of my son’s life. It’s a neurosis that takes on a life of its own: Fear creates a desire for sameness and sameness transforms into routines and rituals from which any deviation invites danger, uncertainty, and panic. He controls those things that are within his power to ease the fears of the things that are not.
Hmm…control as a means to feel safe and decrease anxiety? That sounds vaguely familiar. Well, it shouldn’t really come as a shock that I totally recognized myself in his behaviors. I understood first-hand: control – or the ILLUSION of control – is so very powerful. Before you know it, the boundaries you construct for safety begin closing in, trapping you, limiting you to an ever-shrinking world.
Flash forward almost one full year: Sting and Peter Gabriel’s “Rock Paper Scissors” tour was coming to the area, and I had tickets to attend the concert with my siblings on my son’s 7th birthday. I had been super-excited for months, counting the days with anticipation, pulling out all my old CDs as well as familiarizing myself with newer songs, and sharing my favorite music videos on Facebook.
About a month before the concert my enthusiasm was tempered by a mischievous itch in the back of my mind – a vague, unnamable worry that conspired with my imagination, growing and spreading, wreaking havoc with my logic center, harassing my amygdala.
Worries about traffic became fears of a terrible accident.
Worries about crowds became fears of a crushing mob or terrorist attack.
The likeliness of something horrible happening may have been statistically small, but that fact mattered little to me. The idea that they were possibilities, no matter how unlikely, was enough to send me into a panic until the risk seemed too great for me to chance. My responsibility was to my son and husband – who cares about a stupid concert anyway?
It turns out I did, because within an hour of cancelling, my emotions went from relief, to guilt, to regret. I had disappointed my siblings, especially my sister who had been looking forward to hanging out with me that night. I had also given up what was perhaps a once in a lifetime opportunity to see two of my favorite artists perform together…all because I was afraid.
I comforted myself with the thought that at least I would be home…safe…like every other Saturday evening. No crowds. No traffic. No possibility of an accident or random act of violence. I’d be free from torturous anxiety.
Free from worry, maybe. But not FREE.
I thought about my son, about how difficult it is to take him places and all the experiences he’s missed out on. I thought about his anxiety-triggered meltdowns and the panic in his eyes when he realizes other people are sharing his space, especially children with their quick, unpredictable movements and loud voices. I thought about how he would much rather be home, safe with Mom and Dad, despite his painful loneliness and boredom.
My husband and I had realized that although my son’s fears were visceral and profound and real, those fears had to be challenged. That’s why we still tried to get him out of the house to sensory-friendly places and activities. Sometimes he enjoyed them; sometimes he most decidedly did NOT. The point was to push gently on his protective walls, to broaden his understanding of the world, to prepare him for dealing with the unexpected while at the same time opening him up to the endless possibilities and experiences that make life worth living.
Yes, my fears about the concert were real, but I had to challenge them. In reality, the things I was worried about were things that just happen, the everyday risks we take by simply stepping out the door every morning. I could prepare the best I could to mitigate those risks and minimize my anxieties, but staying home meant resigning myself to a hollow, unsatisfying existence. It meant missing out.
So I went to the concert. And with the first electrifying chords I felt the rush of excitement and adrenaline you only get from experiencing music LIVE and LOUD. I was filled up, recharged. I danced and sang. I got lost in the music and didn’t care what people thought of me.
After all, everyday life with its sameness and routine and beige banality is like chicken and white rice: It’s good and all, but once in a while it’s nice to have cake.
And I ate my cake like a shark that day.
That’s what I want for my son, as well. To live a life of avoidance, of sameness for safety’s sake, is to nibble at life’s edges. I want him to gobble up opportunities and experiences, to try things and enjoy things and, when he’s finished with that bite, demand more.
So I will keep pushing those boundaries of comfort, ever so gently, for my son and for me, in the name of cake and concerts and all of life’s yummy goodness.