Answering kids’ questions about SMA includes encouraging them

If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person, I’ve been the subject of glaring stares, mind-boggling comments, and the occasional finger-pointing from children. That said, I don’t condemn them for their behaviors. I believe children are curious about the world and want to learn about something that is foreign to them, such as spinal muscular atrophy (SMA).

With that belief, I’ve always made it a point to openly talk about my disability with children. My explanations of SMA are simple, and I use phrases like “My legs don’t work as well as yours” or “This is just how God made me.” Despite these surface-level answers, children usually accept my words at face value and move on. However, I’ve now entered new territory.

Being a proud and loving “titi” (which means “auntie” in Portuguese) for the past six years, my niece and nephew are getting more interested in SMA. They’ve heard the simpler explanations and want to know more. After all, having a disabled titi is all they have ever known. The beauty of it is that they’ve accepted my differences since day one. But they’re still naturally curious.

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The other day, while cooking in her pretend kitchen, my niece told her dad that I would get the biggest plate of food because I had SMA. The topic of SMA had been fresh in her mind because she and her brother had asked what was wrong with me earlier in the week. My brother, being too smart for his own good, started explaining SMA to them in terms of genes and proteins. But the only takeaway for a 5- and 6-year-old was that I had “jeans” inside of me. They were highly concerned.

Though the conversation was a flop, it piqued their curiosity even more. They now want to understand why I use a wheelchair or why they can’t go near me when they’re sick. They want to understand why their titi is different. And these are answers they deserve to know in a kid-friendly way.

Upon realizing a deeper sense of wonderment in their inquiries, I’m learning how to approach them differently when talking to them. As their titi, I want to educate them about life with SMA. I want to encourage them to ask questions.

When they’re older, they can learn about genes and proteins. For now, we’ll take it slow. I’ll tell them how I often go to the doctor but don’t get scared. I’ll tell them how I take medication to make me big and strong and that it’s OK to be different.

Most importantly, I’ll show up for them. I’ll be there whether it’s a dance recital, a baseball game, or simply a night at home playing in a pretend kitchen. I’ll continue to nurture their curiosity, encourage their questions, and show them the beauty in embracing differences with love and acceptance.

Note: SMA News Today 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.