Understanding the inner workings of the body and mind is extremely difficult, but as the parent caregiver of a non-speaking young adult diagnosed with autism and Ulcerative Colitis, I feel like the last 19 years have been an endless game of charades.
Although there are plentiful books on the subject, the early phase of motherhood still requires continual observation and trial-and-error remedies to decipher our baby’s every need. We must learn to rely on instinct and identify the slight nuances of each yelp or cry to determine whether our infant is hungry, tired, wet, hurt or just needs to feel our presence nearby.
Knowing that this stage would be short lived, I patted myself on the back for how easily I could interpret my son, Skyler’s body language – my ‘mother’s intuition’ was on point! So, imagine the shock when my handsome, two-year-old was diagnosed with autism and given the grim prognosis that his communication would never develop beyond cries and misunderstood ‘meltdowns.’ I’m sure like most parents in that situation, I was driven to prove that doctor wrong and invested years into trying to get Skyler to speak.
As he aged from toddler to teenager to adult, his needs, desires and feelings never evolved into conversations or discussions of any kind – what food he likes/dislikes, debates about an extended curfew, complaints that he doesn’t feel well or sharing with me the things in life that bring him the greatest joy.
Despite the countless hours of therapies, not a single word has ever come from Skyler. I’ve never heard him say “Mom” or “I love you,” in fact, I’ve never heard his voice at all.
While the 18-year absence of dialogue from Skyler is challenging and heartbreaking, it has forced me to question everything, trust my gut and strengthen my patience as he uses his body to teach and guide me toward answers. I recognized long ago that he doesn’t need to change how he communicates, I need to change how I listen!
An aggressive and repeated up and down tug on his waistband means stomach discomfort; the swipe of his pointer finger across his lips indicates hunger; loud and rapid clapping above his head in the early evening suggests he’s suddenly tired and is growing irritated that we haven’t begun the nighttime routine before tucking him in; and my favorite displays of sheer enjoyment are when he rocks back and forth at the sight or sound of his favorite movies and songs or when he giggles uncontrollably for reasons we don’t understand – presumably it means Skyler is content and his world is perfect at that very moment.
Attempting to curb his anxiety and impulsiveness, we have tried medications and supplements by the dozens. Although some have proven beneficial, there is no magic pill that can help Skyler regulate his emotions and body – which is the biggest challenge of non-verbal autism from my perspective as his full-time caregiver. I repeatedly say, “I wish I could climb inside of his mind and body to know what he experiences on and off medication.” With each prescription, I constantly worry that we are fixing one issue but causing another.
It is overwhelming to watch your child inflict injury on themselves or lash out against other people and property knowing full well they don’t mean to or want to do those things. It’s as if a puppeteer is randomly manipulating the strings connected to Skyler’s arms and legs. His body appears to betray him and he loses all control of what happens and why.
Many months ago, I received the most valuable insight (based on personal experience) from an autistic, young adult speller about how to better assist Skyler during times of body dysregulation and sensory overload.
First, she reminded me that children feed off our energy. So, in times of struggle, if I respond to Skyler with an elevated voice and anger, it has the opposite effect and will only prolong the undesirable behavior. She assured me that Skyler is trying his best to quickly control and redirect his body, but he needs patience, understanding and support in the moment.
Secondly, she suggested that during and after a challenging situation, I repeatedly tell Skyler “I’m not mad at you” and “It’s not your fault. I’m proud of how hard you are working to calm down your body.” She continued, “the positive reinforcement means everything to him because his biggest concern is disappointing you.”
That last comment made me cry.
To think that with everything Skyler goes through, navigating the world with profound differences while regularly being underestimated, his focus and worry is that he let me down.
Knowing this journey is a lengthy one, I try to frequently remind myself of just how far we’ve traveled. Two years ago, I couldn’t fathom Skyler would be capable or even interested in communicating through spelling, but he is absolutely crushing it. It’s clear he enjoys showing off all that he knows based on the huge smiles and laughter during spelling sessions. Skyler continues to surprise me with all that’s been hidden in his beautiful, brilliant mind.
Channeling those early motherhood lessons of keen observation and gut instinct helped me become a better partner to Skyler and recognize that he has never stopped trying to communicate with me. He uses whatever method necessary to show me versus tell me. Skyler represents what it truly means to be resilient.
I pray every day that Skyler is as proud to be my son as I am to be his mother.
