The Share a Story
pages of this website to learn from the experiences of other parents with children disagnosed with cnm / mtm.
First and foremost it should be understood, this is a neurological condition not a cognitive one. Many of the children with this condition are trached, meaning that a tube is inserted into the individuals neck to help them breath and this may result in them being behind with their language skills but a speaking valve can help with this. Sadly, people are mistakenly led to believe that they have learning difficulties - but the brain is not a muscle and it is more usual that these children are exceptionally bright and intelligent for their years. Children can be taught sign language which helps them communicate until they are able to talk and a speech therapist can teach exercises that help strengthen the muscles in face and throat. Other forms of the condition present later in life and are considered to be milder, however, all forms of the condition can be managed.
The resources section of this website contains much information
for families with a new diagnosis but parents may find the organisations detailed below of particular interest.
Contact a Family
Contact a Family provides a wealth of support, advice and information for families with disabled children, no matter what their condition or disability. Parents of older children may be interested to read their document 'Preparing for Adult Life and Transition'.
Contact a Family have offices throughout the UK and a freephone helpline staffed by experienced advisers providing a one stop shop for parents and others caring for a disabled child.
They also have a benefits calculator which enables families to find out what benefits they are eligible for.
DirectGov is the UK government website which details public services all in one place. The website contains a wealth of information for parents of children with a disability, including support at school, college and university, disabled students allowance, information on benefits, sporting facilities and organisations and planning a trip with your child.
Muscular Dystrophy Campaign
UK charity focusing on improving the lives of anyone affected by muscle disease. If your child has recently been diagnosed, visit their website for ways they can help.
Activities for Children
My Online World is social networking provided by the Muscular Dystrophy Campaign - catch up with friends, play games, read reviews, talk nonsense or get serious about something.
Activities for Young Children
Specialist special needs playgroups are usually organised jointly between local social services, occupational and physiotherapy teams. To find out more details about these in your local area contact you local council.
Activities for Older Children
are lots of clubs in different regions of the country for children in wheelchairs or with mobility issues.
Below are some examples but check locally for more information.