Friday, December 20, 2013

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


Hi Sue, If I may, I would like to offer some general advice for readers. 1) Deal with the school always in writing but if there is a casual conversation, write it up immediately and send it to your conversation partner 2) Don't ever go to a school meeting by yourself no matter how much knowledge and experience you have in dealing with professionals 3) Remember it is not about children behaving badly but rather their response to the environment which is often minimized, overlooked or ignored by school teaching staff and administrators. Sadly, too many parents find themselves cornered and themselves labelled when they try to advocate for their children. Regretably, too many children continue to fall through the cracks and do not reach their full potential. Effective advocacy is hard work when it shouldn't be.

Hi Anonymous - this is super advice, and exactly what I was hoping for in response to my piece. Thank you for offering practical take-aways (for me and perhaps other readers). Sue.

Hi Sue, Your story makes me want to cry and scream too! However, I'm thrilled to read that your son is learning to read and count to 100! Through it all, I'm also reading that you are a great mom. And, I couldn't have offered better advice than "anonymous" above. I'll be following your blog.

Sue and Donna, thank you for your kind words. Happy holidays with your family!

Me too! And I'm a teacher. But I still cry almost everytime one of these meetings happen! Isn't it supposed to be "I am woman, hear me roar!"? Sigh

It's OK to cry - shows how much you love your son. I am a business woman and have cried in more teacher/admin meetings related to our son's school than I care to count. My son has ASD and is in a mainstream school environment which we pay a lot for. That said; it's shocking how many teachers can so easily start to focus on what he can't/didn't do. This despite the fact he has an 79% average report card and no behavioural issues - just a slow learner. Through this, I have learned a couple of things: the principal's support is crucial; email once or twice but if still not resolved, it needs a face-to-face meeting (emails can be very misinterpreted); go to meetings with an outline of what you want to discuss (and communicate this ahead of time); take notes in meetings; follow-up with email if necessary (i.e., 'I believe this is what we agreed to...') and; trust your gut on whether the school is the right one for your son. He will ultimately be the judge and will also let you know.... by his behaviour! ROAR!!!