Helping my non-Dravet child to navigate his own health struggles

An ADHD evaluation raises tough questions about disability

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by Meagan Cheney |

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“Does this mean I have a disability, too?”

The D-word is akin to a four-letter word in our home. We don’t like to consider Austen, my 8-year-old with Dravet syndrome, as disabled — especially when she’s been doing so well despite the circumstances life has dealt her. Even during the darkest days of her disease, when she was experiencing multiple seizures a day, I knew that many other people struggled far more.

I say all that to explain why I was so taken aback when Atlas, Austen’s 10-year-old brother, asked me the above question the other day. You see, we’re having Atlas evaluated for attention-deficit/hyperactivity disorder (ADHD). Atlas doesn’t know much about the disorder yet; he just knows that it might be the reason he’s having a harder time paying attention at school, and why he can’t concentrate on his chores at home without being redirected several times.

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I’ve wondered if Atlas had ADHD for a long time. He’s always fidgeting, losing items around the house, and interrupting people during conversations, among other things. That’s happened in ways beyond what my other children have experienced, even Austen.

But still, kids will be kids. And I wasn’t 100% sure. I told myself that if these symptoms started to affect Atlas’ grades or cause disruptions in class, then we’d get him evaluated. Both happened this year.

Starting the evaluation process

First, I noticed his grades started to fluctuate. Then his teachers mentioned that the same symptoms I’d noticed at home were becoming a distraction at school. Atlas was getting in trouble more and more.

I decided it was time to get Atlas evaluated. His teachers and I filled out all the forms and collected the necessary data, and we’re now awaiting his appointment. I’ve talked to Atlas about different ways we might treat ADHD if he’s diagnosed with it, and we’ve talked to different friends and family members who have the condition about how different treatments have made them feel, good or bad.

Atlas knows that Dravet syndrome is at the root of what makes Austen’s brain work differently, and at some point, he must have realized that Dravet is considered a disability. So when he realized his brain might work a bit differently as well, I think it was an easy jump to wondering if he also was disabled.

I tried to shield my older children from the realities of Dravet syndrome during Austen’s dark times. But it didn’t take me long to realize that I wasn’t able to do so. My kids know the anxiety of Dravet syndrome all too well. They’ve seen Austen seize, they’ve held her hand when she’s postictal, and they know what it’s like to have their home swarmed by firefighters and paramedics when the seizures won’t stop. They have always known she is different and are fiercely protective of her because of it.

If you’re wondering, I told Atlas that no, being diagnosed with ADHD wouldn’t mean he had a disability — not in the debilitating sense that he was thinking, anyway. It’d just be an acknowledgment that his brain is wired a little differently, and that’s OK.

Note: Dravet Syndrome 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 provider 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 Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.


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