Support for Parents

Guides and resources for parents of kids with CMT, and parents with CMT

INFORMATION, TIPS AND GUIDES

Welcome to the Parents space.

You’ll find a collection of tips and hints, informative documents, and links for Parents of children with CMT, and Parents with CMT.

Parents of Children with CMT

A guide to your child’s journey with CMT

CMT Aussie Kids is a program run by CMT Australia for children and youth with CMT.  A feature of this program is the annual camp, bringing together kids from around Australia to meet and socialise with others who understand.

My Child has CMT – Booklet explaining CMT to families and children – we thank CMTUSA and CMT UK  for this valuable resource for families.

Teens Guide to CMT – For teens to help them with their CMT Journey.

School and CMT

Guides to help your child navigate their school years.

A Teachers Guide to CMT – This handy document can be given to your child’s school, it outlines what CMT is, how it may affect your child, and the possible accommodations which may be needed to enable your child to fully engage at school.

School Support – Article from CMT’s Winter 2022 Newsletter, written by Jillian Critchley, a parent of child with CMT 1a.

The Role of the School Counsellor – Article in the Summer 2021 CMT Newsletter, written by Jillian Critchley, a parent of child with CMT 1a.

Books

Publications for children to age 9

Beau and His New AFO – A book that makes it easier for kids to understand the “why” behind the instructions they receive so they can take ownership of their AFO and its care.

Frankies New shoes – Follow along with Frankie as she goes through the steps of getting new ankle foot orthoses or AFOs!

Brace Yourself for Another Day – Peaches, the book’s main character has muscular dystrophy and wears leg braces. She imagines a world without leg braces and eventually realises how helpful her braces really are.

Articles, tips, links for parents

The Complete Guide to Driving with Disability  – This resource is a must have for information on all aspects of driving with a disability, from assessments to modifications. Includes detailed information about licensing and certification of vehicle modifications for all States and Territories in Australia. Many thanks to Total Ability for allowing us to promote this resource.

Does this Define Me? – An article published in the CMT Autumn 2021 Newsletter, written by an 18 year old living with CMT1a. It’s an inspirational read.