For Parents

Resources for Parents and Families

When a child is diagnosed with a neuromuscular disorder, it is often a time of shock and transition for the entire family. Muscular Dystrophy Canada is here to help. Contact us for support. Below you will find resources that were developed specifically to assist families by providing information and supportive strategies.

Looking for information about a specific condition?
Types of Neuromuscular Disorders

Publications

Muscular Dystrophy Canada’s
MuscleFacts: Parent Guide

provides information to help parents navigate various issues that may arise following diagnosis. The information pertains to all types of neuromuscular disorders.
To find information related to a specific neuromuscular disorder, please visit the page dedicated to that condition.

Muscular Dystrophy Canada’s
Self Advocacy Toolkit

offers guidance to help you become an effective self advocate. Self Advocacy is the process of understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities and communicating these with others.

Let’s Talk about Sex: A Resource for Parents

This brief guide is designed to assist parents by giving them some ideas on how to address such topics as: puberty, body image / sexual identity, relationships, sex, contraception and sexual assault. At the end of each section, reflective questions are posed to assist in communication. In addition, a wealth of resources have been compiled in the appendix for more detailed information.

If you would like to receive a printed copy of Muscular Dystrophy Canada’s publications, please contact your local office, or call 1-866-687-2538 or email info(at)muscle.ca

 

Media

Karen Dunbar

Watch a recording of “Self Advocacy”
Video Presentation

Presenter: Karen Dunbar, Services Specialist, Muscular Dystrophy Canada
Description: Self Advocacy is the process of understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities and communicating these with others. Karen discusses the importance of self advocacy.
Length: 23:02

Gail Ouellette and Mayss Naccache

Webinar – Orphanet: the portal on rare diseases. A resource for patients, caregivers and health professionals.
Webinar, January 17, 2013

Presented by: Gail Ouellette, Ph.D., Director of the Quebec Coalition for Orphan Diseases et Mayss Naccache, M.Sc., scientific researcher for the project Orphanet-Canada.
Duration: 0:42:23

 

Useful links

Tips for preparing for appointments at a pediatric neuromuscular clinic
MyHealth Passport

A wallet sized card that lists a person’s medical conditions, past procedures/treatments, medications, allergies, and other health issues.

Personal information can be entered and printed. The teen (or adult — anyone can use it) decides what information to put in, but should create the Passport with a health care provider who can provide them with accurate information. Adolescents are encouraged to carry the passport with them at all times and present it to providers when needed. In addition to a printed copy, you can also email it to yourself to have an electronic version.

Helping Kids to Understand their Diagnoses

Talking with children about their neuromuscular disorder is a necessary, delicate conversation.

Talking with Children about Their Neuromuscular Diseases

How to deal with topics such as being unique, life expectancy, and the reasons why this is happening.

First Day of School

Starting the school year on the right footing can turn fears into fun and friendship.

Exceptional Parent Magazine

Provides information, support, and ideas for parents, families, and professionals working with children with (dis)abilities. The focus is on education, technology, and mobility.

National Education Association of Disabled Students

The National Educational Association of Disabled Students is a consumer organization with a mandate to encourage the self-empowerment of post-secondary students with (dis)abilities. They offer an on-line directory of financial assistance, scholarships, and bursaries available to students with (dis)abilities.

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