October 31, 2016 at 6:07 pm #143612Writing a children's book about Muscular Dystrophy
Dear Parents, my closest friend was diagnosed with muscular dystrophy at the age of eleven. She has recently retired from being a successful dietitian and with her help I’ve written a children’s book about Muscular Dystrophy. Her young nephew has also been diagnosed. I was shocked and dissappointed to find so little published material on this subject which affects such a large number of children. I’m now considering illustrating and publishing a picture book for younger children to be read with parents. I would like as much help I can get from all of you to make sure it sends out the right messages. What is it that you feel would help children of this age (under 5) the most.GillianSealeParticipantPosts: 0Joined: 31/10/2016November 1, 2016 at 12:57 pm #143617Reply To: Writing a children's book about Muscular Dystrophy
Hello and welcome to the forum. What a really excellent idea. Perhaps to make it clear though are you aiming the book at those kids who have been diagnosed with MD, or just children in general? Here are some of my thoughts.
Understanding of the condition in that it makes you weaker, and can lead to other things. Thats what I told my children when they were going to be tested at the age of 7. Tell them about how scientists are looking in to the problems and are finding more ways to help MD folk and in some circumstances make them better. But perhaps more importantly than ever, it is not the end of your life or what you can achieve. Despite the prejudcice against fokk with disabilities that still abounds in this country there are many opportunities for disabled folk as we all know. Have some thoughts about what it is like to have MD when your are at school. My own son was bullied for his condition (FHSD). WHilst you may include thoughts about not being able to do sports like runnign or jumping as well as others , or maybe even not at all, they can still join in with some things or take on new things and a glimpse at para olympic sports might give a clue here. Also include soemthing about how rare the condition is (which might make them feel more special) and that they should not be afraid to talk about it with their friends or anyone else. Try and include some famous personalities who have MD so that tehy could relate to them.
Just a few of my thoughts, but I am sure that there will be lots more, and better thoughts, from the others here.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015November 1, 2016 at 7:03 pm #143629Reply To: Writing a children's book about Muscular Dystrophy
Is aim to help siblings understand. What age group.
Problem is. soo many MDs and everyone’s stage is different.
It could be helpful to have a series of short books. highlighting a MD child with equipment. Give kids with this equipment something to identify with. walking frames, Ventilators and power-chairs dont often feature in mainstream books. If it was individual equipment it could be useful to help the child’s preschool class learn about kindness and understanding their classmate may need.
or even illustrate MD kids playing sports like powerchair football or Boccia. highlight what fun things are inclusive for them
cant find it. but a lovely video did the rounds on facebook of a brother or friend helping a child onto a swing set. its not clear if the child has MD or CP. but the spirit of the clip was. sometimes we need help to be included. its a nice message
A nice picture book on using ‘my first ventilator’ would be nice.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010November 1, 2016 at 9:58 pm #143632Reply To: Writing a children's book about Muscular Dystrophy
What an excellent idea! For such young chidren I think the illustrations will be important- bright and colourful. Also the presentation will be important, such as a book with flaps???
Although I think that it needs to highlight some challenges such as mobility it is really important to highlight all the steps to make the child feel included and as much part of their class, when at school, as anyone else. It could have a theme such as getting a piece of equipment which enables the child to join in. A before and after scenario.
I think that it is vital to bring out positive messages and the fact that the child is included in all aspects of life – at home and school. Also that the child with MD just wants to lead a life like their friends and that they can with the help of specialist equipment, adults at home and school and their friends.
I look forward to hearing more about your venture.
Shevvyshevvyt1ParticipantPosts: 0Joined: 16/11/2013November 22, 2016 at 1:50 pm #144761Reply To: Writing a children's book about Muscular Dystrophy
Thanks everyone, I’ve found your posts increadibly helpful and I’m trying to come up with a way of including most of them in a simple story. I love it and am feeling really inspired. I think the most important thing I’m taking away from this is that there is lots of types of equipment these days that can help kids with MD to do thinks like the rest of their friends and they can go on to achieve great things. I’m really excited now. Cheers! Gillian xGillianSealeParticipantPosts: 0Joined: 31/10/2016November 22, 2016 at 5:18 pm #144780Reply To: Writing a children's book about Muscular Dystrophy
Thanks everyone, I’ve found your posts increadibly helpful and I’m trying to come up with a way of including most of them in a simple story. I love it and am feeling really inspired. I think the most important thing I’m taking away from this is that there is lots of types of equipment these days that can help kids with MD to do thinks like the rest of their friends and they can go on to achieve great things. I’m really excited now. Cheers! Gillian x
looking forward to reading the finished project.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010November 23, 2016 at 11:51 am #144799Reply To: Writing a children's book about Muscular Dystrophy
Good luck with your venture Gillian!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015December 4, 2016 at 9:23 pm #145348Reply To: Writing a children's book about Muscular Dystrophy
I think its a great idea. one thing which I think would be good would be to point out that hospitals and doctors aren’t a scary thing thing. that’s an issue we had with our son. he has emery driefuss, as do I, as did my dad. I am also secretary for the cornwall branch of MDUK. if you need any extra help let me know. think its a realy good idea though.waynelensonParticipantPosts: 0Joined: 17/03/2016February 5, 2017 at 7:28 pm #147265Reply To: Writing a children's book about Muscular Dystrophy
hi your idea is just what I am looking for. I am 60 yrs old now I lost my brother from Duchene Muscular Dystrophy 18 yrs ago I remember the day my dad told me that my brother had MD I was 11yrs old.
I had never heard of the condition before, I repeated it over and over to myself until I found a pen to write it down. I went to library and asked for a book about MD they had to send away for one, when it arrived it was a very large reference book, at 11yrs old I could not understand it.
now 18yrs on my nephew has been diagnosed with the same condition. he has three young sisters and I think a book aimed at them helping them to understand about the condition, what to expect, in a child friendly way is exactly what is needed. when you have written your book I will be on your waiting list for a copy.
freda varleypeterParticipantPosts: 0Joined: 05/02/2017June 1, 2017 at 6:26 pm #149869Reply To: Writing a children's book about Muscular Dystrophy
Hello, my name is Simon and my son has DMD. I read your post and would be interested in helping. I am a primary school teacher with an interest in children’s literature. Let me know if I can help or advise.
You could always FB me Simon Cardy and pm me.
SimonSimon CardyParticipantPosts: 0Joined: 01/06/2017
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