As boys with Duchenne muscular dystrophy get older, their disease progresses and it’s likely that their emotional response to the disease will change over time. It’s perfectly natural for Duchenne MD patients to experience frustration, anger, self-pity and anxiety regarding their condition, but there are ways that you can help them cope with their emotions. We’ve put together a list of tips for helping Duchenne MD patients better cope with the disease, with help from Parent Project MD.
Encourage open communication
Be open and honest about Duchenne and let your son know that he can speak to you about any concerns or worries he has at any time. If he’d rather speak to a doctor or counselor, then let him know that you can arrange that as well.
Allow free-flowing conversation about his emotions and let him express his thoughts in a healthy and constructive way.
There may be certain issues that your son is experiencing that are adding to his emotional stress such as bullying, learning challenges or teenage hormones. If the problem is something that can be sorted, put plans in place to rectify the situation.
Keep up with your child’s changing needs at school
As your child’s Duchenne progresses, the school may need to change its classroom set-up to become more accommodating and to ensure he is not accidentally being excluded from activities. Your son’s needs will continue to change as he ages, so you need to be one step ahead to ensure there are as few problems as possible.
Encourage your child to be as independent as possible. The more they can do for themselves, the better their sense of self-worth will be. Encourage them to socialize with friends and to take part in activities without you.
As your son gets older, he should take on more responsibility in the decisions regarding his health care, education, and social life. Be there to guide, but acknowledge that he can make some age-appropriate decisions on his own.
Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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