Where to get help

Though you may feel very alone at this time, it is important to know that many have come before you and are eager to help. 

Gradually, you will begin to realize that with the proper intervention, your child will become an active and contributing member of his or her family, school and community. Your child is the same child they were the day before you heard about Fragile X syndrome.

Start by calling The Fragile X Research Foundation of Canada at 905-453-9366.  You can also visit our About Us section for specific email contacts by subject area. We are here to help.

You are also recommended to contact the Canadian Association for Community Living to arrange an assessment. Find your region on their website or call their National line at: 1-800-278-8025.

Community Living provides support and directs newly diagnosed families to locally available support services, such as various therapies and government programs. Experienced Intake Coordinators do an assessment of the individual needs of your child and will assist you with completing any appropriate applications for services. Some of the Intake Coordinators are Social Workers or will direct you to Social Workers who will follow your family and provide assistance.

Community Living also assists with:
  •  Helping identify and coordinate resources that are available to you while you're waiting for formal support to begin. This includes assistance with referrals to other programs or services and advocacy for entry into service.
  • Accessing parent relief, social and recreational programs and one-to-one life skills teaching.
  • Providing leadership for the issue of inclusion, advocating for the rights of people with intellectual disabilities and their families, and helping Canadians and communities build an inclusive country.
  • Promoting awareness about inclusion and providing the tools for making classrooms, workplaces and communities more inclusive.
  • Fostering leadership of families in the community and supporting efforts on behalf of all people with intellectual disabilities through local and provincial/territorial Associations for Community Living and grassroots networks.
You may find other agencies in your community that are helpful and able to assist you as well.