I’m a solid advocate for my son in the pediatric health system. I’m prepared, articulate, and know how to persistently and politely lobby for changes in his care (or in the system, too).
But usher me into the school conference room for a meeting with the assistant principals and teachers, and I turn into a blubbering mashup of tears and rage. I’m a mama bear, to be sure, but a shrill weepy one. My rational and eloquent advocacy in health flies out the principal’s window. I walk out feeling defeated, overwrought, and with a vulnerability hangover.
Upon reflection, I think it is 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 in Grade 5 when Mrs. Groff scolded me for sharing my cough drops with Stacy Betts, and the second time in Grade 8 when I was caught red-handed by Mr. Matwichuk reading the book Endless Love in social studies class. (THAT left scars that have never faded).
My eldest son mostly skirted trouble in school (save for one memorable phone call from the principal when he was in grade 11) and my 17 year old daughter follows in her ‘good girl’ mom’s footsteps.
But for my son with Down syndrome, who is only ten? Phone calls from teachers, principals, texts from his assistant, meetings called in the school office, impromptu meetings held in his classroom after school, where I’m crammed into his chair, my knees bumping up against his desk.
In those meetings, 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 twelve years; it happens at least once a week. Each time, I feel my face flush and my heart beat faster, and immediately am teetering on the edge of that cliff, about to lost my shit.
Nobody calls me in the middle of a work day to tell me what an awesome kid 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). It is always about behaviour. It is always labelled ‘bad’ behaviour. 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 a transfer of some of my health advocacy skills to the school system. I want to use my voice effectively; I want to 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.