Wednesday, November 18, 2015

Invisible strings

Sophia was diagnosed with autism just a month after her third birthday. Diagnosed as “non-verbal, low functioning” Autism. The parents didn’t know what to expect. Today, Sophia is a beautiful girl of nine and in the third grade. In class she spends a good portion of the time with her peers, reading books, and writing. She recently started doing double digit math and subtraction. Every day is a bit of a miracle and a lot of resilience.

“Being home during the summer meant being somewhere so familiar that I had long since acclimated to the sensory data of the surroundings. The lighting, sounds, tactile variations…my mind was used to it all and did not have to work as hard to process the never-ending stream of incoming data.”

The familiar is peaceful. Change is the opposite. Change means the senses are raw and exposed and under attack.  School was always that opposite after a summer immersed in the sensory familiarity of home to Edwin.

A new school year would mean not just a different setting, but one that included a huge number of different rooms and activities. The classroom had one set of sensory experiences (the sound of pencils being sharpened, the peppery scents they caused, chair legs scraping floors, etc)…the hallway had another set (rowdy kids, their echoing voices)…the playground had its own range of sensory experiences, as did the lunchroom, the bathrooms and so on.

It takes Edwin’s mind quite a while to acclimate to any new environment. And school is a dozen new environments all rolled into one. He puts up a brave front and gets on the bus every day. He looks away when his parents wave. He constantly leaves the comfort of familiar to the awkward and prickly pressures of the new. I can understand his not wanting to wave now.


“Every school day I stand by the bus as my twins get buckled into their seats. I wait and I wave. When Grandma is there she watches me and says something like, ‘Do they see you?’ or ‘I don’t think they care about waving today’ and I never answer those statements. I wave goodbye every day until the bus turns left, and they can’t see me waving,” says Patricia, mom to a set of twins, both on the spectrum.

“Have my two autistic daughters ever waved back? No, not yet, but I still keep waving, because I’m mom, and that’s what moms do. Because one day, my girls will wave back; one day, “bye-bye” will be part of their social world. Or, because one day there will be another moment, like when Angel looked directly into my eyes with recognition and pushed her tiny hand against the bus window as I waved. She kept her hand on the window until the bus turned left and I couldn’t see her anymore. So, yes, I wave. I wave every day.”

Today’s post is my gift to all mothers of children with milestone delays or delayed development. They strive every day to teach their children, to presume competence, to hold their expectations high enough, to embrace their child’s differences and yet carefully recognise the fact that it could take up to 2,000 repetitions for a child with special needs to learn something that a typical child will likely learn in 200 repetitions. They balance expectations every day — not too low, not too high and realise that in addition to being Moms, they get to see miracles at work and play.