Believe
We huddle together on the platform: my mom, our family friend who is our BCBA fairy godmother, my profoundly autistic twenty-two-year-old son, and me. We are minutes away from boarding the sensory-friendly car of the Whippany Polar Express, on a frigid but relentlessly sunny day at the end of December. My son nestles into me for warmth, while simultaneously playing with a light-up/spinny toy we of course had to purchase to commemorate the trip. I’ve told him we are going on the Polar Express train, having shown him the movie he so adores the day before, and read the story to him as well.
He is non-verbal. His iPad can convey many things, but not whether or not he fully comprehends what we’re embarking upon today.
Within minutes, the “conductor” comes out and does his spiel straight from the story, and I notice that Justin is paying attention. He finishes quickly, and the ropes restraining us from making our way to our special car are dropped to the ground. We are almost at the end of the train before we find our place, are welcomed aboard, and settled into our seats. I’d been told that the difference between the sensory car and the rest of the train was only a few modifications; no flashing lights, the music turned down slightly, and no touching of the passengers.
I wasn’t sure if those changes would have made a difference to Justin, but with profound autism, better to be safe than sorry.
We are told it will be a few minutes before we leave the station on an hour-long ride through North Jersey, where the entire story of the Polar Express will be acted out and served with the requisite hot chocolate, a prop from one of the more entertaining songs. As Justin is thoroughly entranced with his new toy, this affords me a few precious minutes before the train commences to reflect on this year, both for me and for my family.
There were empowering moments for me, such as my trips with the National Council on Severe Autism and Autism Speaks to DC, where I got to advocate not just for my son, but for thousands of other profoundly affected individuals like him. Autistics who don’t have the luxury of explaining why Medicaid cuts could destroy their lives; why continued replenishing of the autism research coffers is integral to their health and welfare; why, and this is particularly near and dear to my heart as well as the hearts of my soul sisters in HomeLife21, the housing crisis for profoundly autistic men and women must be resolved, and soon.
There was the bittersweet and triumphant moment when I left my youngest on his coveted college campus, as he gifted me with a smile replete with excitement and confidence that validated every choice, every sacrifice, his father and I had made for him.
There was a period of crisis, more profound than my family’s usual everyday crisis, where I learned that as long as my family is safe and happy, nothing and no one will ever break me.
All of these experiences have one overshadowing theme.
It is time for my profoundly autistic son to live a life independent of me.
I thank the Early Intervention provider who told me heartlessly, eighteen years ago, that I would be ancient when Justin left us, and I would never get to choose who he lived with, where he lived, and most importantly, who would take care of him.
On account of her cruelty, she compelled me to make new friends. Several of them are the individuals who comprise our non-profit, HomeLife21.
The fiercest, most committed to the cause, relentless women I know.
I am called back to the present when Justin vocalizes for water, and I reach into my bag for the sippy cup, which will quench his thirst. One of the cast members makes his way down the aisle requesting tickets, and true to the spirit of the Polar Express, after asking for both of ours, he punches them to reveal our letter, and our message from Santa.
I already know what our letter will be.
The letter we both received reflects our collective passion to create a safe and exciting residence for our boys that is not just a house, but a home.
Our letter emphasized our commitment to lead others to commit to the same endeavor, so that one day, contemplating placing a profoundly autistic adult in a residence won’t be a choice made from fear and desperation, but from confidence and trust.
The letter punched for us reflects my irrevocable realization that we will never give up until our sons’ adulthoods match their happy, safe childhoods.
Our letter is “B”.
“B” for believe.
