A mother expresses the heartache of a life of exhaustion, lived on the margins of society
Second in a series of commentaries about exclusion of individuals and families affected by severe autism
Author’s photo
By Sheryl St. Aubin
Do they know?
Do they know that people in our life gradually fell away? Or planned without us, or how we no longer fit in?
We watched through the window as they hung out in their lawn chairs, relaxing, and chit-chatting. They had no understanding of the hidden blessings they were given. The ability to simply stay still. So simple, yet so grand, to a family like ours, but we didn’t know either before special needs so maybe they don’t have any awareness of how good they have it.
Do they know how it pained us to watch their child, younger than ours, sitting quietly, patiently, and playing so effortlessly and independently? Sitting quietly while we chased and worried and had to stay inches apart from our son - hands clutched tightly because his elopement was inevitable. Because the 911 calls and sounds of search parties and dark retention ponds constantly flood our thoughts. Do they know that I don’t want to be a “helicopter parent” but I am out of necessity?
Do they know that they could have asked if we wanted to come to their backyard cookout, even just once, even if it wasn’t a possibility in our world it would have been nice to be invited, but they never tried. Instead, we found out after an awkward knock on their door and hearing our kid’s friends’ laughter echoing in the background.
I wonder if they were embarrassed.
I wonder if they knew how sad we were.
I wonder if they knew how often I cried.
I wonder if they knew how isolating and lonely this life was and still is for us.
I wonder if they knew that we just wished they would include us occasionally.
Do they know about the tears my son cried when he heard the delightful squeals of his friends going down the water slides? Do they think we didn’t know with all the cars parked in a straight line down our street? All the participants carrying birthday gifts?
Do they know that they made my older kids feel like outcasts as much as they treated our youngest son as one? How they were not included or punished for having a brother who was different?
I wonder if they know how sleep-deprived we are. That my bedtime is four am and my wake up was 6 am. Or how much I crave adult interaction and that a phone call would have made my day? Did they know how much I miss girl’s night, laughing and socializing on a beautiful patio somewhere?
Do they know that our son’s therapists were my only friends on most hot, balmy summer days when most parents were hanging out at the pool? Or I wonder if they know how many jobs my husband works to pay for out-of-pocket therapy costs that our son needs. We live in divide and conquer mode, and most of my days, I’m inside on autism duty.
I wonder if they have an inkling how my older children miss being a family the way other families gather every day without a care in the world.
We are alone in a sea full of neighbors.
One diagnosis.
And our lives flipped off like a light switch.
No one knows how this pressure would eventually crush my family.
Do they know that despite it all we all yearn to be invited to parties and cookouts and campfires? To be seen? To be seen like we were before the days of autism.
Sheryl St. Aubin and her family reside in sunny Florida. She is a Mama Bird to three beautiful, socially unique, children. While juggling her busy life, she spends her days writing and connecting with caregivers just like her. By sharing her story, she hopes to provide support and raise awareness for the special needs community. Her writing has been featured on Today’s Parents, Finding Cooper’s Voice, Filter Free Parents, Her View From Home and Love What Matters. You can follow her journey on Instagram: threelittlebirds321 or on Facebook at Three Little Birds – Raising Kids on the Autism Spectrum.
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