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Dmd and school

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  • October 3, 2012 at 3:20 pm #74562
    Dmd and school

    Hi my son is 8 yrs old with dmd, his hands are starting to tire in school and we think he could benefit from a computer but have no idea what he would need, has anyone any experience with this? Also he is using a manual wheelchair, what age do boys with dmd usually get a powered chair? Also is there any other equipment that may be helpful in school? He has an adapted ruler and scissors which are great. Does anyone elses chld get physio during the day? He is at mainstream school with a classroom assistant. There is no family care worker in northern Ireland and my sons OT sees him very rarely, she is now on sick leave and we really would appreciate some info or advice in these areas, thank you!!

    Anonymous
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    October 3, 2012 at 4:45 pm #86527
    Re: Dmd and school

    have you tried discussing this with your local muscle disease officer ?

    stefan

    littlestef
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    October 4, 2012 at 9:12 am #86525
    Re: Dmd and school

    Hi, we only have a consultant at the muscle clinic where we attend twice a year, there is no MD care advisor is northern Ireland at moment, waiting for them to recruit someone. I just thought I would try to get some info from parents who are on the same journey as we are x

    Anonymous
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    October 4, 2012 at 9:32 am #86526
    Re: Dmd and school

    Hi

    I have just found this publication about IT. If you haven’t downloaded publications like this before you may need to register to use the library.
    It is four years old now but there are some useful contacts and ideas on assistive technology.

    Re. Physio, when I was at school (over two decades ago :shock: ) I had a paediatric physiotherapist that visited me at home every two weeks and she also met my carers in school to show them stretches and exercises to be carried out when my classmates were in PE. It will depend on your local authority’s policy I guess.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
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    October 9, 2012 at 3:06 pm #86524
    Re: Dmd and school

    thank you for the info, i will register and take a look at that. I am meeting with my sons teacher tomorrow to discuss some issues of concern like getting him a computer etc. just finding it very hard when you get diagnosis and then it just seems you are left to get on with it with very little support or advice as to what our son actually needs :-(

    Anonymous
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    October 17, 2012 at 7:50 pm #86528
    Re: Dmd and school

    In my opinion try to keep your son writing for as long as possible, i have DMD and can still write and im 28 now! Computers once in a while of course but all in moderation, as for power chairs leave him to decide is probably best, seems to be around 10 or 11 though! but varies i could of walked longer than i did i think but i struggled after a long period of immobility leg brake sadly

    Anonymous
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    January 25, 2013 at 2:03 pm #86529
    Re: Dmd and school

    angle.my son he is seven with dmd.just tried to get powerd chair they say he cannot have one untill he can no longe get about inside.Also my son has treatment at school with assistant.Do well with this.

    kirstylane41
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    March 8, 2013 at 4:24 pm #86530
    Re: Dmd and school

    Hi Ange
    Both my great nephews have DMD. We are in Scotland and the help we get for them is really good. They both get physiotherapy in school and the eldest got his powered wheelchair when he was 7and a half years old. Unfortunately his condition developed rapidly re mobility and upper body strength. Normally here they get a powered wheelchair when they are considered to need it and are able to use it safely. We were concerned as to wether he would be able to manouever safely and avoid danger to himself and others given he was so young but (thanks to computer games etc)? he was a natural! no problems at all. I guess what I am trying to say is that there is no particular age re the chair but when you think the quality of your son’s life and independence would benefit from it just ask.
    We as a family have found that after the diagnosis of DMD, it was helpful for us to be proactive in finding out all we could about it eg online and getting in touch with the MD campaign and to ask for the help we believed would benefit the boys. Here in the west of Scotland we only had 1 Family care advisor who has to deal with al Muscular dystrophy sufferers and she cannot possibly keep up with every developement for each individual, so she depends on the family to contact her as each need arises.
    It took us quite a while to get our head round the diagnosis and deal with the emotional trauma of it so I hope that you have a supportive network of family and professionals round you as we know how important it is and appreciate the help that is there for us.
    Sr. Rita Howard

    teresamargaret
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    March 8, 2013 at 11:23 pm #86531
    Re: Dmd and school

    I agree keep him writing as long as possible, but let his teachers know he may struggle to keep up, I wrote all through school and university but did struggle when the teacher went too fast, allowances also need to be made for poor handwriting, and apply for extra time in tests. I mainly used a computer for homework and projects to make them look good. You could always ask if the school minds you recording his lessons so he can catch up at home, I had a mini tape recorder, although I rarely used it.

    As for the wheelchair stick with a manual one as long as possible too, you will have a fight getting one anyway, I’d suggest talking to the muscular dystrophy campaign about getting an advocate when you do deal with NHS Wheelchair services, it can be extremely stressful.

    I’m really glad to hear your boy is in a mainstream school, I’m so glad my family supported me in my choice to stay in mainstream education, it helped me keep perspective and helped the other children too.

    I am 38 now so some things will have changed regarding treatment and equipment, hopefully for the better, since I was at school and university.

    You can read more about my school and university life on my friends blog, hopefully it may help a bit http://notevena.blogspot.co.uk/2012/11/DanielsStoryPart1.html and http://notevena.blogspot.co.uk/2012/11/DanielsStoryPart2.html It took me a long time to open up and write those posts, I’ve never liked making an issue of my DMD but if it helps even one person then it was worthwhile.

    Daniel.

    danielbsc
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    March 14, 2013 at 3:03 pm #86532
    Re: Dmd and school

    The computer sounds like a good idea – I had one through the back end of school and college because of my hyperhidrosis (couldn’t grip pens, even with pen grips!). One thing I did find invaluable and cheap to buy was an audio recorder, well it was more a digital dictaphone really, coupled with an external microphone, which meant that I could listen to anything again that I didn’t quite get down. Worth a thought :)

    Muscular Dystrophy UK staff member

    Alexa Follen
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    March 15, 2013 at 2:22 pm #86533
    Re: Dmd and school

    Hi and thank you so much to everyone for your comments and useful information. My son has now been ordered a new manual wheelchair which is so much lighter than his current one so he will hopefully be able to push it a bit for himself. He has also got a notebook/laptop for school which he will use for longer writing activities. But he is a keen drawer so there is no stopping him yet with pencils and pictures lol :-) He has been swimming once a week with school during the past few months and we are delighted that he can do this in mainstream (even though me or my husband have to go into the water with him – it’s worth it). He had his assessment at physio yesterday and scored higher points than he did 6 months ago. We had reduced his dosage of steroids 5 weeks ago and were concerned it might affect him more with tiredness etc but so far so good. Just want to keep him as active for as long as possible. We have no access to hydrotherapy in our area so hopefully the swimming will continue to help. Thankfully a care advisor has now been appointed in Northern Ireland and services appear to be improving :-)

    Anonymous
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    March 15, 2013 at 3:40 pm #86534
    Re: Dmd and school

    Thank you for the up-date, so goods to hear things are moving positively for you all.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    March 15, 2013 at 11:45 pm #86535
    Re: Dmd and school

    Great to hear he’s doing so well and keeping active, back in my day we didn’t have steroids for DMD, well I was never given any anyway, don’t think it hurt me not having them, good luck to him in the future, will be interested to hear how things go.

    Best Wishes,

    Daniel.

    danielbsc
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    March 16, 2013 at 4:36 pm #86536
    Re: Dmd and school

    @amgmod wrote:

    Thank you for the up-date, so goods to hear things are moving positively for you all.

    I second that! Do keep in touch with how you guys are doing :)

    Muscular Dystrophy UK staff member

    Alexa Follen
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    April 16, 2013 at 12:14 pm #86537
    Re: Dmd and school

    So happy to hear that you now have a Family Advisor, don’t be shy about approaching her/him! Anything comes up just ask! You will recognise your son’s needs before anyone else,including the Professionals. Our two boys are so different in progression if this disease….even though they have exactly the same mutation on the same Exxon.
    Sr. Rita

    teresamargaret
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