Updated: Sep 12, 2020
I’ve done the back to school thing with my children for the past 22 years. It is safe to say this year is like no other.
My youngest son is my only child left in school. He’s entering Grade 12 and he has Down syndrome. This last formal year of schooling is significant to him and our whole family. It has taken years of advocacy to support him to get to this important time in his life.
For kids who are disabled, the government calls graduating from high school ‘transitioning.’ I simply call it growing up.
Here we are in the midst of a pandemic. His classes abruptly switched to on-line learning in March, but the problem was they really didn’t switch. In the chaos of the months that followed, his classes consisted of doing assignments with me, his mother (who is not known for her patience). He had a few video calls with teachers and only a handful of connections with other students. He was fortunate to have regular calls with his Educational Assistant (EA). March to end of June was bleak but we all muddled through.
I always start sweating at the anticipation of summer. For families with disabled children over the age of 12, there’s little to no youth care options. I’m always jamming work in at 6 am in between figuring out ways to make sure my son has a decent summer experience. Every year it is the same for those of us who have kids who aren’t welcome at regular day camps or can’t be left alone on their own.
This year, I am extremely grateful to the half-day young adult camp at the Down Syndrome Resource Foundation. It has given Aaron the structure, social interaction and sense of belonging that he was missing all spring. When I dropped him off the first afternoon, I drove away feeling the weight of a 1000 pound elephant off my chest. Guilt is heavy. I knew he was safe, well-cared for and having fun for the first time in months. Many families do not have this option, and I know we are extremely lucky.
Now September is looming. What is happening with school? I don’t know. This uncertainty is awful. I felt it before when I was diagnosed with cancer, and I feel it now. Aaron keeps asking me when COVID will be over. When there will be a vaccine. I keep saying, “I don’t know. I don’t know.”
Usually I can confidently answer all his questions. All this “I don’t know” is extremely unsettling. Here is our Groundhog Day conversation:
Aaron: “When can I go back to school?”
Me: “I don’t know.” Play this on repeat, over and over again.
In late July, our Education Minister announced that, “most students will return to school full-time to school.”
Who are “most” students? Why weren’t students “with funding” (as they call them here), many of whom are at high risk for COVID, even mentioned? As usual, these students are invisible, forgotten, a footnote, an after-thought.
Telling the public only ‘part’ of the story is a rare misstep for our provincial government. This is a colossal communication failure. This only leads to speculation and unnecessary anxiety for families.
We watch the news, fretting about one thing: What does this mean for my child? When there are no concrete answers about social distancing, schedules, masks, testing…well there are no details about anything really…this is not a formula to instil confidence.
I asked Aaron, who is the expert of himself, what he wanted to do for school in September and he answered:
“I want to go back to class, baby!”
I want him to go to class too. It isn’t only so I can work. I have left paid work before to care for him, for this is my life as a mother. I want him to continue to be included in regular classes – as he has his entire school career – to learn, have new experiences and have fun in his graduating year.
But here’s the rub: First I need him to be safe. If Aaron is not safe, there’s nothing. If he gets sick, there’s nothing. If his teachers are out of their own minds with worry about getting sick themselves, there’s nothing. The summer is ticking away and I’m simply waiting for an assurance from my government that my son will be safe if he sets foot in their educational institution.
It is my main job as his mother to keep him safe. Safe comes before everything: before learning, belonging and social connections. Governments, it is time to step up now. We sitting in our homes, watching the news and pressing refresh on our computers. We are waiting.
Please, when you finally tell your citizens what is happening with back to school, do not forget about the students who have extra funding, those who are disabled. For they are waiting too.
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