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  • #74702
    My son’s musc. dystrophyy.

    Hello. My son has muscular dystrophy. Up until recently he hasn’t had to change much to accomodate. That is changing and quickly. It’s very difficult for him and for me. This year was the first time he had to use a wheelchair at school and he really hates it and I don’t blame him one bit. He wants to make friends and go do things but most of his friends are very physical and have kind of disappeared. Not on purpose of course but because their interests are not the same and middleschool is very different than elementary. He really wants to home school. I’ve gotten a lot of different ideas about that. Some say it will just isolate him more. True. But I don’t think he’s actually learning all that much at school and he’s turning into a very unhappy child. Now some of this is because of his disease worsening of course. But some of it is he really hates middle school. I have to admit I hated it too. Anything you’d like to tell me would be great.

    Posts: 1
    Joined: 14/02/2013
    Re: My son’s musc. dystrophyy.

    School years can be very difficult when you have a disability that limits you physically and unfortunately it makes you all to aware of you limits when you see friends going off and playing without you :( I am assuming (correct me if I’m wrong ;) ) that you are in the USA? I don’t know anything about the school system there, do you have specialist schools there for students with disabilities? Maybe your son would benefit from some interaction with peers who also have impairments have you thought of trying some clubs, something like power wheelchair football.

    Posts: 1,015
    Joined: 05/03/2015
    Re: My son’s musc. dystrophyy.

    Growing up and experiencing the teenage years isn’t always enjoyable or pleasant, but add to it a serious medical condition (especially if it’s visible), it can make that whole growing up period a whole lot worse. It will take him time to adjust obviously, as with any unfamiliar situation, and it doesn’t surprise me at all that he’s so unhappy. I don’t have MD, so I could never possibly imagine what he must be going through, but I have a rare disease myself (idiopathic hypersomnia/Non-REM narcolepsy) which meant I too had a condition which people could see and I couldn’t partake in anything remotely physical either eventually as I’d just fall asleep. It took me a lot longer to adjust than it did other people. If I had an option to be homeschooled and I took it, I don’t think I’d be as mentally resilient as I am today – what people think doesn’t matter to me anymore because I have ‘been there done that’ in middle school…but then it’s all about personal choice and circumstance. This isn’t to say that he should suffer – this is a difficult time for both of you. My mum used to keep in frequent contact with the school and flag up any poor behaviour towards me, or speak to them about my workload, or sometimes just check up on me. Once I knew she had been doing it, it was a bit embarrassing, but it did help a lot and she did try to give me my own space. Maybe this would be the time to take solace in a hobby, or a new fun thing to do? That’s what did it for me. I loved English, and I used to sit and do my homework and coursework all of the time I was awake. I never went out with friends, but I did manage to join an online forum a bit like this one and talk to other people with a similar problem and of a similar age.

    There is no quick fix, all you can do is be there to support him and be there when he needs you. Good luck and if you ever need a chat or to vent, do pop over and say hi :)

    Muscular Dystrophy UK staff member

    Alexa Follen
    Posts: 32
    Joined: 12/05/2015
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