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Supporting people affected by Charcot-Marie-Tooth disease.

Education

Most children with neuromuscular conditions (like CMT) can be fully included at their local mainstream school, and will receive the best education there, enabling them to reach their full potential. Getting it right is a rewarding experience for all involved and will greatly enrich any school and community.school

You should discuss your child’s CMT and any resulting disability with her or his teachers to ensure the school is aware of your child’s needs. A fine line exists between expecting too much from a child and being overprotective, both for well-intentioned parents and teachers alike.

Things to consider

The earlier you address any issues that may affect your child’s education and overall school experience, the better.

Children who find it hard to write due to weakness, fatigue, cramp, associated joint laxity should have a handwriting assessment. Young children may benefit from aids such as a pencil grips, a writing slope or an iPad. As they progress through primary school a laptop and keyboard skills tuition, may be useful. Later, they may need additional time for rest breaks in exams.

The school should be made aware if your child is more severely affected by CMT, to ensure that they can safely access all areas of curriculum. This could include:

  • assistance dressing/undressing and in PE
  • help with a school lunch tray
  • an adult on hand in case of falls in break time
  • help with practical lessons e.g. lifting saucepans in food technology, using equipment in DT
  • ability to leave lessons early in senior school to avoid crowds on stairs – or use of lift
  • provision of a locker to avoid carrying too many books in a rucksack, which should always be carried on both shoulders!
  • a second set of textbooks (if needed) at home to avoid carrying books to and from school
  • transport to and from school if using public transport is problematic. Only certain pupils will qualify

The best source of information on the statutory obligations of schools and local authorities is Contact a Family, a national charity supporting parents of disabled children (with any kind of condition). They have resources explaining the latest legislation, which changed as of Autumn 2014.contact a family logo The rules are also different for England, Scotland, Wales and Northern Ireland, so you will also need to take that into consideration. Contact a Family also operates a free helpline that will help you with these changes to the system.

 

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