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Ending with a Whimper

My son Aaron has not been to in-person school since March 6, 2020, when the pandemic arrived. He was midway through Grade 11.

He’s eligible for a bonus Grade 13 this year because he is considered a ‘funded student’ as he has Down syndrome. After today's Back to School press conference from our provincial government, we’ve decided – together with Aaron – that he’s never going back to school.

The lack of online learning options and public health measures like social distancing, smaller classes and proof of vaccinations for staff and students are the nails in the school coffin.

Suddenly, just like that, Aaron is finished school.

One friend said to me, “it’s not worth fighting a system that has never been there for our kids.” She’s right. I don’t trust the provincial government to make schools safe for my son, who is double-vaxxed but still high risk for being hospitalized or dying from COVID. When the trust is gone, there’s nothing left.

Aaron has been in school since he started pre-school when he was only two years old. He’s always had a support worker – and he’s had many, some of whom he keeps in touch with: Jess, Mrs. Brock, Mrs. O’Hara and recently Chris, who has been with him for five years, since Grade 8. I am grateful for these skilled Educational Assistants (EAs) who have been a big part of his life.

School has not been easy for Aaron. The education system is also not a walk in the park for any family who has a child with a disability. Aaron had terrible years from Grade 1 to 3, with an EA who didn’t understand him and who corrected his every move. At the same time, Aaron learned about being the target of a bully at the tender age of seven. The child who bullied him was the son of a prominent lawyer and doctor. We got no support from principal at that school with the bullying situation, so we ended up having to sell our house and move to another neighbourhood to get Aaron into a gentler school, with a Vice-Principal who knew him and looked out for him.

Aaron was in Grade 6 when we moved provinces from Alberta to British Columbia. My husband and I interviewed seven principals to see what school would be the best fit for him. Once we took out the schools where the principals spoke only about Aaron in terms of funding dollars, we had few schools left and had to find a rental in a tight housing market that was in the school catchment area. This was a nightmare.

No, if you have a kid who requires ‘funding,’ they cannot just go to any school. It does not work that way. I learned not to bother fighting a school to accept your child. You never win and your child is the one who suffers.

The elementary school in B.C. had some bumps, but they had a kind principal who welcomed Aaron onto their basketball team (the first and last time he was ‘allowed’ on an extra-curricular activity). I have fond memories of watching him play basketball with the other kids and seeing them slow down a beat to pass him the ball. Aaron won Most Valuable Player that year.

We chose his high school carefully too. It was the feeder school from his elementary school. We picked it in hopes he would know some of the students there. Sadly, as many families can attest, he never made any authentic friends at school. Two brothers who live in our condo building went to school with him, but they never acknowledge Aaron when they see him in the lobby. Aaron never broke through socially.

Thankfully, the principal of his high school supported inclusion for Aaron. Aaron took many classes with other students: Drama, Science, English, Automotives, Computers, Media Studies and Physical Education. One progressive teacher welcomed him into her Leadership class. The special education class was his homeroom, and he ate lunch there with the other students. He had social belonging in that class that did not exist outside those doors.

This is reading like a eulogy, and I guess it is. We sat down with Aaron tonight and talked about his school career. I am grateful to all the teachers who believed in Aaron, knew he could learn and adapted their teaching for him. I have a special thank you to Terry and Judy, his biggest cheerleaders, and Chris for his understanding of Aaron’s occasional mischief.

Last fall, Aaron stayed at home and had a few hours of week virtually with his EA. They did research projects and cooked together on Zoom. In October, I received a notice for Aaron to get his grad pictures taken. One of our only outings to an indoor space that fall was to the grad photo studio. I assumed he would go to his graduation in the Spring 2021, but he did not. We thought he could re-do his Grade 12 year this year instead and go to his graduation next spring. But he cannot because of our government’s weak public health measures.

Every family has a terrible decision to make this year. 2021 is different than 2020 because all children are at risk now because of the Delta variant, not just the medically compromised kids. Really, ending Aaron’s school career wasn’t a decision at all because we had no choice. We cannot risk Aaron getting a breakthrough COVID infection from an unvaccinated staff or student.

We all do what we have to do. We are extremely fortunate that we can pay for private adult programs at a local Down syndrome organization. When we asked Aaron about returning to high school, I wrote the name of his high school on a piece of paper and the name of the Down Syndrome Resource Foundation (DSRF). Which one do you want to do this year, I asked and gave him a pencil.

“This one,” he said, circling DSRF. “Why?” I asked. “Because I have friends there,” he said. “And they understand me.”

While it might be my dream to see Aaron walk across the stage at high school graduation, as his older brother and sister did, it is not his dream. I must step aside as he builds the adult life that he wants now – as an actor, boyfriend and friend.

The pandemic – really, the government’s public health policy - has cancelled his school prematurely. It is inequitable, but Aaron has faced inequity many times in his life. We will push through with him as we always do.

Maybe when it is safe, we will throw Aaron his own grad party. If you have been involved in Aaron’s life in any way over these past 18 years, you are cordially invited. Wear your party hats, as I have a feeling it will be quite the blow-out bash.


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