Category Archives: Parenting

What to do with a new diagnosis of muscular dystrophy

So you’ve just gotten home from the doctor who said that you or your child have muscular dystrophy? What are you supposed to do now? Many people email me this question and I tell them pretty much the same thing … Continue reading

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Parent Tips Week: Remember that nobody is a statistic

The average number of children per family in the U.S. is 1.86. Do you know anyone who has 86/100ths of a child? That’s not even possible. This leads to my last tip of this week to parents: Tip #5: Remember … Continue reading

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Parent Tips Week: Keep the enabling to a minimum

Independence is a valuable thing. I am extremely happy to have maintained my independence despite using a wheelchair. That doesn’t mean I don’t get help every now and then, but 99% of the time I am living my own independent … Continue reading

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Parent Tips Week: Don’t let worrying get in the way

Even though I’m guilty of it, I’ve always believed that worrying accomplishes nothing. When we worry, we typically imagine the absolute worst case scenarios about the situation we are focusing on. How often does that happen? Rarely, if ever. For … Continue reading

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Parent Tips Week: Remember that all of life is uncertain

I’ve gotten many emails from frantic parents who just found out that their child has or may have muscular dystrophy. This feeling is completely normal and I wouldn’t expect anything less from a parent. A diagnosis creates a ton of … Continue reading

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Parent Tips Week: Let’s all be normal about it

I noticed the “Parenting” category of my site was particularly low on posts so I thought I’d do a week of tips for parents of kids with muscular dystrophy. Keep in mind that these are coming from the point of … Continue reading

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Parental checks and balances

Sometimes I got angry at my parents for overdoing it when it came to accommodating my muscular dystrophy as a kid. Usually this anger was directed inward, other times I made it known what I was feeling. Take for example, … Continue reading

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