Why We Discuss Disability With Our Young Child

Jennifer van Amerom avatar

by Jennifer van Amerom |

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In my family, I am the third child of four, the daughter of proud, immigrant parents. I grew up in small towns until I finally relocated to Toronto in my early 20s.

Growing up, I only knew one kid with an illness, and she entered my life as quickly as she disappeared from it. No one else at school was ever as sick, so many of the other children were scared of her condition, which resulted in them treating her like a pariah. Kids can be so mean when left to their imaginations.

As a child, I had only ever heard of heart disease and cancer. We did not talk about rare diseases. In September 2009, when I was in my mid-20s, I suddenly became paralyzed from the bra line down. My team of doctors told me it was unlikely I’d ever walk again. They tested me for many disorders, including neuromyelitis optica (NMO). I had never heard of NMO, but no matter — I was sure I didn’t have it.

Three months later, however, when a second test confirmed the diagnosis, I felt confused. Why had no one ever discussed rare diseases with me? Did I know anyone with a rare diagnosis? I ate well, exercised, and got enough sleep. I followed all the rules, so to speak, so why was this happening to me? Why was my body betraying me so badly?

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Over time, I found healthy ways to accept my diagnosis. I’ve learned how to incorporate cognitive-behavioral therapy into my life. I’ve also embraced my role as a patient ambassador for The Sumaira Foundation Canada, finally understanding the positive impact advocacy can have.

I sometimes wonder, would I have handled my diagnosis differently if I had been introduced to rare diseases as a kid? Would I have approached my diagnosis differently when it inevitably happened to me?

I have a young daughter now. My 9-year-old is full of questions, and I try to answer them all, especially the ones about our bodies and health. I tell her we can do everything we’re supposed to do, and sometimes things still don’t work out. I tell her that’s OK because we can find the silver lining, even in our toughest moments. We get into long discussions about expectation versus reality, about creating a plan but being OK with the path we’re on.

I’m sure these existential conversations are rather heavy for a child, but then, maybe not. When a new kid starts at school, or her classmate feels unwell, or she notices a child eating alone, my kid will go out of her way to be empathetic. She’s incredibly matter-of-fact about many realities that make adults uncomfortable.

I hope she never gets sick like I am, but statistically speaking, she’ll eventually face a personal health challenge. If she does get sick, I’m confident she’ll handle it with more understanding and patience than I ever did.

This is why, when other patients ask for guidance, I tell them I believe it’s OK to share our health realities with our children. I still recommend we be careful, and do so within reason. While I’ll let my daughter see me hooked up to an IV machine, I still won’t let her be in the room when a nurse needs to stick a needle into my arm. My contorted face is involuntary, as is my irrational fear of even the tiniest needle.

I’ve discovered that children will let you know when the information becomes too much. My daughter will get distracted, change the subject, or on rare occasions, start to hum. That’s my cue to back off, a skill I have really perfected because of NMO. I’m so much more aware of emotional cues now. These cues are all we have during difficult moments when we can’t fully articulate how we feel.

If you aren’t teaching your children about disability, I recommend starting. It’s an integral part of life, and should be included in our discussions about diversity, inclusion, and acceptance.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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