2020 has been a year. I remember in the early months I worried about Robert being accepted and treated fairly. The gap for many with disabilities has widened, thanks to the pandemic. Despite the challenges, the year 2020 hasn’t been only horrible. There have been some pretty great moments too.
To send 2020 off right, our friend Kylie made this beautiful video. She held an “open casting call” for people of all abilities to submit moments in 2020 that represented joy and pride. In the heaviness of the Pandemic news, the quarantine, the work-from-home-while-raising-kids, and the worry that the lack of socialization brought, it’s moments like these that deserve to be celebrated.
Kylie not only recognized this but put it to video!
While friends and family prepare their homes for the arrival of Santa Claus, we battle one virus after another. Croup has already hit our home this year, going from one boy to the next. It took a lot out of us, physically draining the boys and consuming us with worry. As a result, I was really hoping that we wouldn’t have to worry about much more than a common cold for the rest of the season.
Unfortunately, I was wrong.
Last Thursday, Robert didn’t seem quite himself. With his violin concert debut scheduled for Saturday morning, we decided to keep him home from school on Friday. We thought all he needed was a day of rest.
When Sullivan woke up on Friday, we could tell he wasn’t quite himself either. Well, we thought, we may as well keep him home from daycare to give him a little more rest as well.
Neither of them had much energy on Friday. Sullivan perked up in the afternoon, but for the most part he was a grumpy bear.
Fast forward to Friday night. If it wasn’t one kid waking up, it was another. I barely slept 45 minutes between each wake up, and it was a rough night. Somewhere, in the middle of all this, I cancelled Robert’s violin debut. It broke my heart to press send on that message to his teacher. It was one thing to back out of a breakfast date with some friends and Santa, but it was another to miss what we’ve been working towards. I know it was the right call, but it still sucked.
Saturday my husband had to work, so I took advantage of his mid-day start and I took a nap while the baby napped. I am so grateful that I had the presence of mind to do that, not only for my sanity, but it allowed me to think clearer that afternoon.
Robert is toilet trained, but often wears a pull-up at night (and 99% of the time, it’s dry when he wakes up). Because he was sick, we kept him in a pull up around the clock, just in case. I could see he was pretty lethargic, and rushing to the washroom when you’re feeling that way and are still learning to listen to your body, well, it’s next to impossible.
I was changing him just after lunch and noticed that he had developed a rash all over his torso. My parents encouraged me to bring him to the emergency room to be checked. I dropped the littles off with them and headed in. We were quickly triaged and placed in isolation.
A nurse came in and, realizing I was communicating with Robert in French, drew on her memory of French Immersion classes to talk Robert through what she was doing as she checked him. She apologized for her imperfect French, but she needn’t have. The effort alone was priceless and helped to make him feel comfortable, and on top of that, her French was beautiful! (If you’re reading this: Merci!)
The resident doctor came in shortly after the nurse left. He did a very thorough exam of Robert. He asked me questions such as “When did the symptoms begin?” and “What medications is he on?”, until finally he looked at me and said “Does he have any congenital problems?”. I told him that Robert was born with a congenital heart defect, but that it had naturally repaired itself. He looked at Robert, looked back at me, then said “Does he have Down Syndrome?”
It had never occurred to me to tell him.
Not once that visit had I told any of the staff members that he had Down syndrome. And this resident was unsure, not wanting to make any incorrect assumptions. I was so unprepared for the question, forgetting that not everyone knows, and realizing in that moment that it isn’t so blatantly obvious.
The resident left and came back shortly after with the doctor. She examined Robert for possible ear infections (he is not prone to them), checked his throat, examined the rash that had spread on his torso, down to his arms and even in his armpits. “I am going to swab his throat, but I am almost certain he has strep throat and scarlet fever.”
Do you know much about Scarlet Fever? Because I didn’t. I just assumed it was something of the past, something that I read about in Jane Austen novels. It’s not. It’s here, and my poor boy had it. It was scary to hear, but she assured me that a simple round of antibiotics would clear it all up.
So here we are, day 4 of a 10-day course of antibiotics and the change in Robert has been outstanding. He went from complete loss of appetite to his normal, healthy requests, and from lethargic on the couch to begging us to “jouer hockey avec moi, maman” morning, noon and night.
Here’s hoping he stays healthy into the Christmas holidays, and that the colds his brothers have don’t develop into something more…
How often does someone tell you that your child can’t do something? How often are other people the biggest barrier your child faces when trying something new?
Our oldest son, Robert, is 5 years old. In his short time on this earth, he has shown us that he will not be limited by what others think he is capable of. He will overcome barriers and forge his own path.
Lately, we’ve seen Robert succeed and excel at a variety of things. For example, his speech is outstanding – so much so that Google understands him!
If that last bit makes you wonder “well, why wouldn’t Google understand him?”, I urge you to check out the current campaign that Google is running in partnership with the Canadian Down Syndrome Society.
He is friendly, social, and very observent.
He also recently began playing the violin. We’ve heard people say that he won’t be able to. That he can’t. Not because he is too young. Not because he isn’t musical (he is). But simply because he has down syndrome.
His greatest barrier it seems, is other people’s preconceived notions of his abilities.
What surprised me most about this barrier was not that people have preconceived notions (after all, what am I advocating for if not to change that perception?), it was the fact that it’s proven that music is one of the best therapies. And I don’t mean only music therapy (which is given by a highly trained professional), I am also referring to music lessons. Music lessons provide children with special needs, children like Robert, the ability to increase their self-esteem. It has been proven that music lessons improve hand-eye coordination, memory, cognitive development and muscle development. It has proven effects, and yet, that barrier exists within the arts community.
With the help of his grandparents, we signed him up for private violin lessons (with an incredible teacher) and enrolled him into a string school. Twice a week he goes to his instructor’s studio for short violin lessons. These lessons are intentionally kept to a shorter length to reflect the attention span of a 5 year old.
At string school, he sits among his peers once a week to learn the ins and outs of music and violin from talented teachers. The classrooms are welcoming, the teachers are engaging and supportive, and Robert is thriving.
Had we listened to those who said “He can’t”, we wouldn’t be proudly watching him play with gusto.
We will help him break down those barriers, one ability at a time.