Grandparent Support
Grandparents grieve twice — once for a grandchild's diagnosis, and once for the pain they see their own child going through. They often feel helpless, unsure how to help, and afraid of saying the wrong thing.
Practical Ways to Help
- Learn about the condition — read the Just Diagnosed guide alongside the parents.
- Offer specific help: "I'm coming Tuesday from 2–6 to watch the kids so you can rest" is better than "Let me know if you need anything."
- Learn the medical routines — medications, feeding, seizure protocols, transfer techniques. Become a safe backup caregiver.
- Attend a therapy session or doctor's appointment to learn what therapists are working on.
- Babysit the siblings. They need grandparent time that isn't overshadowed by medical appointments.
Emotional Guidance
- For birth diagnoses, say "congratulations" first. Always.
- Don't say "I'm sorry" — say "I'm here."
- Don't say "it could be worse" or "God's plan" — say "this is hard and I love you."
- Follow the parents' lead on language, therapy choices, and medical decisions — even when there's disagreement.
- Don't search online and send articles at 3am — the parents are already overwhelmed with information.
- Ask how the PARENTS are doing — not just about the grandchild.
Financial Contributions
- Contribute to the RDSP — grandparents can contribute to a grandchild's RDSP, and the government matches up to $3,500/year.
- Help fund equipment or therapy costs not covered by provincial programs.
- Pay for respite — even informally. Hiring a babysitter counts.
- Contribute to a Henson Trust for long-term financial security.
Resources
21 Welcomes (CDSS)
Has a section specifically for grandparents and extended family
"Grandparenting a Child with Special Needs"
Book by Charlotte Thompson — comprehensive guide for grandparents
"The NeverEnding Story: The Grandparent's Guide"
By Down Syndrome Innovations — specific to Down syndrome but broadly applicable
More Family Support
Respite Care
Temporary relief for primary caregivers. Most provinces fund respite care — most families don't know.
Sibling Support
Siblings of people with disabilities are often the most overlooked members of the family.
Parent Support Programs
Connect with other parents who understand. Provincial networks, dad-specific support, and couples resources.
Equipment & Devices
Free lending libraries, provincial assistive device programs, and funding sources for equipment.
Camps & Recreation
Summer camps, adaptive sports, and year-round recreation programs across Canada.
Future Planning
Henson Trusts, wills, guardianship, Letter of Intent — planning for when caregivers can no longer provide care.
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