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This topic has 0 replies, 1 voice, and was last updated 3 years ago by Kevin Schaefer.

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      Kevin Schaefer
      Keymaster

      The hardest part for any parent, whether their child has SMA or not, is letting their child grow up and be independent. It’s perfectly natural for parents to always have a desire to take care of their children no matter how old they get, and SMA makes it even harder to let go.

      I’m 24 with SMA Type 2, and my parents have always encouraged me to live my life, and not let SMA get in the way of my career or social life. As such, I just wanted to provide some encouragement to SMA parents and caregivers who may be anxious about sending their kids to school, letting them go out with friends, etc. Here are some tips for those kinds of situations.

      Trust your child/teenager to ask for help when they need it: It may feel daunting at first when you’re not with your child when they are at school or in social situations, but understand that they’re capable of asking for help. It’s inevitable that they will need to ask strangers for help when they grow up, so train them to do this early on. Make sure they can articulate their needs. This way they can get the help they need when you or your spouse/partner isn’t with them.

      Put your child in social situations at an early age: The sooner your child interacts with other kids their age, the sooner their peers will learn that they’re just like everyone else. Obviously your child will have physical needs that other kids don’t, but the only way your child’s able-bodied peers can learn about those needs is if they’re in the same social situations. Let your child go to birthday parties and to the playground with their friends. If they’re older, let their friends drive them to parties and to hang out. I understand that it’s intimidating at first, but I think that ultimately it will benefit you and your child if you give them some independence.

      If your child/teenager wants to do something by themselves, let them try: There will come a time when your child wants to do something without your assistance, and that’s very natural and healthy. Maybe it’s something like being dropped off at the mall with friends and not accompanied by a parent; or maybe they want to go on a trip with friends and let their friends be their aids for the weekend. I’ve gone on trips with just friends before, and these trips were liberating experiences. It’s good to let your child or teenager with SMA do these things, despite the anxiety you may feel.

      These are just a few tips I have, and I’m happy to answer any questions you may have about growing up with SMA and gaining more independence. And allow me to just say thank you for all that you do as parents and caregivers of kids and adults with SMA. You all are true superheroes.

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