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  • Talking To Your Child With SMA About Adult Life

    Posted by kevin-schaefer on March 14, 2019 at 10:52 am

    As an adult with SMA, I’m often asked by parents in this community about things like gaining independence and post-college life. As parents, I’m sure you all want to see your kids grow up to be independent and to have productive lifestyles. SMA obviously presents many obstacles in this regard. However, in this day and age, there are so many resources available to those of us with disabilities. An independent lifestyle is not easy to acquire, but it is very much a possibility.

    I encourage you all to start by having conversations with your kids about growing up. I’ve written columns about letting your kid with SMA dream big (, and I think it’s the first step in this process. Encourage your kids early on to pursue their passions and get involved in things. I don’t think I would be where I am today if I hadn’t done theatre as a kid and entered creative writing contests, which were both things that my parents encouraged.

    From there, teach your kids to advocate for themselves. I’ll probably do a separate column on this point, as it is so important. I’m sure that you have a natural instinct to want to do everything for your child and to speak up for them at all times, but know that this will limit them in the long run. The more responsibility you give your child when they are young, the better off they will be when they become adults. This can be as simple as letting them speak for themselves at IEP meetings at school, or letting them talk directly to their doctors at appointments.

    Finally, encourage your child to be social and outgoing. Regardless of their personality and whether they’re introverted or extroverted, encourage them to join clubs at school and to invite friends over. I can’t tell you all how much of a positive impact my social life has had on me. As an adult, I’m always striving to build new relationships and meet new people, and I attribute that attitude to how involved I was when I was a student. Tell your child that it’s ok to have a handful of really close friends, but that it’s good to branch out as well. If they do this early on, it will really help them with their social development and interpersonal skills.

    I’m no parent, and I don’t mean to tell you all how to do your job. Yet as someone with SMA whose parents have always been supportive and willing to push me, I wanted to simply share my perspective with you.

    What questions do you have? Have you talked about these subjects with your child?

    kevin-schaefer replied 4 years, 8 months ago 2 Members · 2 Replies
  • 2 Replies
  • krystal

    March 14, 2019 at 3:05 pm

    Thank you for this post, it is very helpful. My daughter, bless her heart, she loves kids and babies, and is very talkative. She is only 15-months right now, so honestly all she does is blabs away in Gibberish, but hey, she’s not afraid to tell us her feelings and what’s been going on throughout her day. I hope she continues this when she begins forming true words and sentences.

    • kevin-schaefer

      March 14, 2019 at 4:51 pm

      Thanks Krystal! Yeah it sounds like she won’t have any problem with being outgoing when she gets older. Being talkative can be a good thing.