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Charcot Marie Tooth Disease
Hello I would be pleased if you could help me on the following
My grandson Beau is 10years and have recently been diagnosed with a muscular wasting disease CMT We are wanting to do the best for him at this crucial time
He currently has difficultly with hand dexterity and get tired on physical activity. He is intelligent but the school are concerned that he cannot get his work down on paper easily and thus does not show is potential.
His mother would welcome you help with this specifically who can provide support to the East Sussex and is there any help that can be provided in the classroom. It is also difficult with what we actually say to him we do not want to frighten him
Many thanks Carol Anne Slater
Re: Charcot Marie Tooth DiseaseHi!
I’m so sorry that your little man has to go through this, but with a loving family & support he will have as normal and happy life as anyone can.My daughters have a neuro-muscular condition and are recieving help from school.
The eldest is in university ( even though her first high school told her not to bother!) she gets anything and everthing ahe needs as higher education is much better supported and serviced, they have specific disability assessors.My youngest daughter Lucy is in high school, where help is not so easy to organise, they don’t have specific assesors with a budget she has to go through special needs co-ordinators who aren’t the most clued up on muscular conditions.
I have been told that how it works where I live, so it may be different for your education authority, is that they need it all in writing what her condition is and how it affects her.
In order for her to receive things like extra time to do her work & exams, a computer with voice recognition software so she doesn’t have to write all the time, her specialist has to specify that these things would be helpful due to her condition!
If a doctor or specialist doesn’t explain to the special needs person exactly how the condition affects her daily and what Lucy requires to help her than she won’t stand much chance of getting it.
So to help them understand her condition I printed off fact sheets from the best and most reputable sites and gave them to her school along with a letter from the specialist.
I am also using that same technique to arrange and claim medical transport for her to school, very helpful as I too have the condition.
So read up on his condition and sit and really think what he may need now and in the future to help him in school and at home and explain to his specialist and get their support.
I don’t know how things go where your grandson lives but this has been my experience crazy though it may seem!
I hope this helps a little.I’m sure that the support and advocacy team from the MDC will give more thorough advice and support if his mum gets in touch.
Good luck and take care!
Re: Charcot Marie Tooth DiseaseHi Carol Anne
I would echo what Shellybear has said about getting the school’s SENCO on board. I am in East Sussex but it is a while ago since I was in the educational system. I remember there being a lot of liaison between my London consultant, local paediatric physio and my schools. I think that communication between them is really useful and having a fully informed and understanding head teacher is helpful too.
Your regional care adviser will also be able to give your family support and guidance with all aspects of managing a neuromuscular condition – if you don’t ready know, your region’s contact details:
Pammy Malhotra
020 7803 2859
p.malhotra@muscular-dystrophy.orgBest Wishes
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
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