The other day I took part in the “It’s a Wonderful Life” panel at the Cure SMA conference. This panel is an annual Q&A in which a group of us (adults with SMA) answer audience questions about life with SMA. As multiple parents asked us questions about everything from going to school to hiring caregivers, the best advice we could give them was to have high expectations from their kids, and to teach their kids to advocate for themselves.
It’s never easy for a parent to let their kids spread their wings, especially when they live with something like SMA. However, the more they can learn to speak up for themselves as kids, the easier it will be for them to be independent adults. Tell them to speak up in school when they need accommodations. Have them work with aides and caregivers early on. I promise that starting these practices early on will help them and you when they become adults. Also feel free to ask me or any other adults here any questions you have about this.
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