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Finding the right school for a fragile son Add to ...

Sitting around a table discussing my son’s school placement for next year, everyone there implies they know better than I do what is best for him. Although it’s painful to hear, they say, the “gap” between him and other children his age will begin to widen in Grade 3. The children will notice his differences and not want to include him. He will be lonely, ostracized and teased. I should agree to move him from his regular class at the neighbourhood school to a special-needs class at a new school. I should be (and am) grateful for the accommodations that have been made for him in the past, and accept their view that it’s time for him to move on.

Charlie was born with a genetic condition called fragile X syndrome. I was, unknowingly, the carrier of a flawed X chromosome that when passed on to him rendered his brain incapable of processing an important protein. As a result, Charlie is intellectually impaired. He has major anxiety in new environments. He trembles in fear at loud noises and chaotic situations. He struggles to learn.

When Charlie started missing developmental milestones, I started to worry. When he wasn’t walking or talking at 18 months, the nagging concerns were impossible to ignore. And so began the journey to find out what was going on. When he was 2½, I was told by an experienced developmental pediatrician that there was nothing to worry about: I shouldn’t compare him with our older child, who was clearly advanced in her development.

I desperately wanted that to be true. If my inner voice had allowed me, I would have buried my head in the sand forever. I’d have screamed with a sense of validation at people who looked at him curiously: “There’s Nothing Going On With Him!” But I couldn’t, because I knew the doctors were wrong.

I wasn’t trying to be a fly in the ointment. I know I’m not a doctor. I wanted to be told I was being an overreactive and overbearing mother. After much insistence from me, he was tested for various genetic conditions including fragile X. By then, through my own research, I knew what it was. His diagnosis at 4, though heartbreaking, was not surprising. Despite my devastation, I felt oddly relieved. I knew what I was dealing with – and not having known what the problem was for so long hadn’t worsened it.

When Charlie joined his older sister at the local public school, I was told he could stay there for kindergarten. After that, I was told, I should move him to a special-needs class at another school because he needed more support than they could give him.

Everything I had read or been told through the fragile X community supported the integration of fragile X kids with their age-appropriate peers. Children with fragile X learn best by copying others. The special-needs classes I visited were wonderfully accepting and warm. The problem was once again my nagging inner voice. They just didn’t seem the right fit for Charlie, especially with everything I knew about peer modelling and integration.

After many sleepless nights, I decided to keep him in the regular class at his school. With a bit of a struggle, the school was allotted two half-day special-needs assistants to work with him.

What I really want is for Charlie to reach his full potential, whatever that may be. My hope for him in Grade 1 was that he would learn the alphabet, write his name and maybe some day be able to read.

His teacher for both Grades 1 and 2 was motivated, accepting and truly amazing. He, along with the two assistants, enabled Charlie to make huge gains both socially and academically. He knows his alphabet. He can write his name and a few other words. He has begun to read! He is calm during fire drills, can finally attend assemblies and even performed at his holiday concert in front of a huge crowd. The results of my decision to keep him there have been phenomenal.

When dropped off at school, he tosses his backpack, grabs his mini-stick and joins in the hockey game like any other kid his age. He knows every teacher and many other pupils by name. When he walks by the Grade 8 boys playing basketball, they let him take a few shots. The other day, a group of Grade 6 girls asked me if I was Charlie’s mom as if he were some kind of celebrity. They told me how cute he is and how much they adore him.

My daughter chose to write and perform her Grade 4 speech on fragile X syndrome, and talked about how proud she is of her brother and all he has accomplished. Other parents have thanked me for the opportunity for their children to get to know Charlie and to learn about accepting and understanding differences. I’m humbled by how my community has embraced him. He is genuinely happy.

Of course, I worry that not changing schools may not be the best decision for Charlie. Am I burying my head in the sand? All I can say is that nobody scrutinizes his situation more than I do, looking for any sign that he is unhappy or being treated poorly.

At the end of the day, the only person I will have to answer to for the decisions I make about him is Charlie himself. When I came home from that meeting with the school administration, Charlie could tell I’d been crying. He said, “Why are you crying Mommy? Is it because you love me so much?”

He was right.

Jill Cameron lives in Toronto.

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