He looks at me with pleading, desperate eyes. His back arches, his body flails, he slaps his hands on his head in frustration. He is bored and over-stimulated at the same time. He wants to get out of the house and yet wants to stay inside it, his body unsure of what to do or where it would feel more at ease. He misses school. He misses his friends. He is craving his usual routine. And it’s only 8 a.m.
The excitement of a snow day does not exist in our home. There is no sleeping past the usual (very early) wake-up time. The childhood thrill of playing in the snow is too cold, too wet, too much for my child with sensory challenges to handle. There is very little joy in a snow day when your child has disabilities.
Our son, who is 5 years old and has Fragile X Syndrome, relies on routine and order. Change is hard; no, change is generally impossible without a lot of warning. Hours without structure and plans, a whole day of hanging around the house (or worse, being stuck inside it), and he becomes a monster, though we know it’s not his fault; it’s the chemicals in his brain that just don’t work the way yours and mine do—he can’t help it.
So that’s where we need to step in and help him.
It’s Jewish Disabilities Awareness and Inclusion Month (#JDAIM) and as I watch my friends post pictures on Facebook of snow days that include family sledding adventures and building snowmen, baking cookies peacefully, or reading and watching movies, I know that my snow day will be very different.
My husband and I will take turns “resting” with our child, which means giving him sensory input, a series of strategies to calm his nervous system that may involve physical pressure and other external stimuli. In his case we will do a lot of snuggling, wrestling, and hugging him so that he is able to become more aware of his body and its needs.
We will allow him to play on the iPad for hours, switching from one show to the next, or one annoying YouTube clip to the next, every three seconds, as his brain searches for stimulation he cannot seem to find (if you think it’s annoying to watch 24 minutes of Dora yelling at you, imagine hearing the same line over and over and over again because it hits your child in a certain way and he just can’t get enough of that sound—oy!).
And we will try to recreate the routine and structure he craves, singing the songs from his school’s circle time, reading a story like the librarian, even doing yoga poses with the lights off. And because our son is obsessed with Jewish prayer, we will likely participate in his prayer services where he will sing the Shabbat morning prayers over and over again, inviting—no, demanding—us to rise and bow and march around with the Torah at his command. And of course, we will do all of these things and more, because we love him and only want him to be safe and happy.
At some point the iPad battery will need to be recharged, and so will we. There are only so many times I can bow to “Aleinu” (my son’s current favorite prayer) before my back is too tired. And eventually during one of those “resting” moments, I’ll close my eyes and realize my son has put me to sleep and it will be so hard to get up again.
It may be a day off from school, but for most parents it is a day on for parenting. Add the element of parenting a child with disabilities and it becomes a very challenging day. I hope my strength and faith are able to persist until bedtime, and I wish all other parents who have children with disabilities an extra bit of love today!