Sad mama bear

By Sue Robins

In the health system, I’m an advocate for Aaron, my son with Down syndrome. I’m prepared, articulate, and know how to persistently and politely lobby for changes in his care.

But usher me into the school conference room for a meeting with principals and teachers, and I turn into a blubbering mash-up of tears and rage. I’m a mama bear, to be sure, but a shrill weepy one. My rational and eloquent advocacy with health professionals flies out the principal’s window. I walk out feeling defeated, overwrought, and with a vulnerability hangover.

Upon reflection, I think it’s because when I was a student, I was a nerd girl, a library girl, and a good student. I got into trouble only twice in 12 years: once it was in Grade 8 when I was caught red-handed by Mr. Matwichuk reading the book Endless Love in social studies class.

But for my son with Down syndrome, who is only 10?
 

At least once a week, there’s a phone call or text from a teacher, principal or assistant about his “behaviour.” There are formal meetings in the school office or impromptu discussions held in his classroom after school, where I’m crammed into his chair, my knees bumping up against his desk.

In those moments, I feel very small. I am that 13-year-old girl caught red-handed with a semi-soft-porn book in my class (what was I thinking?). But this doesn’t happen twice in 12 years; it’s a weekly ritual. Each time, I feel my face flush and my heart beat faster, and immediately I’m teetering on the edge of that cliff, about to lose it.

Nobody calls me in the middle of a work day to tell me what an awesome kid my son Aaron is. How he’s learned to count to 100 this year, and how his reading skills are blossoming. (I do get that lovely feedback from the teachers, thankfully).

The calls are always about behaviour and it’s always labelled “bad.” I talk about how behaviour is communication. They talk about how behaviour needs consequences. By the end of the conversation, I want to stand in the corner with a dunce cap on my head.

All I want for Christmas is to walk into the school with my health-advocacy hat on, the one that allows me to use my voice effectively and speak rationally about what I want for my boy. And for once, just for once, I don’t want to cry in a school meeting. I am the saddest mama bear that you ever did see.

This post was adapted from a piece on Sue’s blog.