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This topic has 0 replies, 1 voice, and was last updated 1 year, 8 months ago by DeAnn R.

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      DeAnn R
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      Hey everyone! Here is a sneak peek at my next perspective piece that will be posted Monday 8/5/19. I talk about how with SMA we need to claim independence. Let me know how you claim your independence. Do you find it a struggle?

      Independence is something I believe every parent strives for when raising their children. They want their kids to grow up to live their own happy successful lives. Although it’s still true when your child has SMA, I think at times it’s more difficult for parents to let go and they occasionally can inhibit their child’s independence. Sometimes it’s also easy for those of us with SMA to sit back and let that happen. Obviously when you can’t stand or can barely reach your face, as in my case, you need to rely on others. That doesn’t mean you can’t be independent, you just have to claim it.

      Growing up Mom & Dad were my main caretakers. Mom worked in the school district. I would get home from school first followed by my older sister shortly after and parents later on. Of course Mom made sure I was able to get into the house and anything I would need was within reach. Remote control and a snack being first and foremost. I have a feeling she had my Gramma call and check on us too. Gramma was probably the most overprotective. It makes me laugh thinking about the time my sister made a gagging noise two seconds after she told her not to choke on her snack. She freaked out until we both started laughing. Had I done that we probably never would have been left alone again. Because of those short stays alone, I figured out as long as I was prepared everything would be well.

      One area where it might be easy to become complacent is making and going to appointments. Frankly it’s just easier not to have to deal with trying to make schedules jive. I’m still not a fan of this process, but I’m an adult and that’s what adults do. Although I take public transportation, I still get rides from my Mom now & then. Before I make an appointment I check her schedule, then try to work around it. I’m perfectly capable of attending appointments alone, but if I need moral support or don’t want to leave her waiting in the waiting room if she drives me Mom will tag along. At the appointment though I make sure the questions are directed to me and I’m the one answering them. Parents can be great advocates, but we also need to learn to advocate for ourselves.

      Parents will always worry, it’s in their nature. Mom probably still worries about me every day. The best way to gain independence is to show you can be independent. It can start with little things like keeping things you know you’ll need within reach. Then when someone asks if you need something you can say, “No, I got it.” Maybe have a night where you plan the meal. You can even order groceries online these days. You might need help preparing it, but do as much as you can yourself. Even if you can’t eat yourself it’s still a nice gesture. And by all means make your own appointments. Not only will you feel like you’ve accomplished something it will also let your parents know they’re on the right track, and maybe they’ll worry a little less.

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