Support and Connection for Families
Just as every child with special needs is unique, so too is each parent, family member, and caregiver. No one type of support is right for all people. We've selected a sample of resources that parents have found useful along the way.
Read About Other Parents' Experiences
Here are a few essays, book lists, and story collections to get you started:
- Common Bonds: an essay on the experience of parenting a child with special health care needs Meg Comeau, former Coordinator of Boston Children's Hospital Family-to-Family Program
- All the Silver Linings: a series of brief essays written by parents for Band-Aides and Blackboards
- Partnership for Parents: for parents of children with serious and life threatening illnesses
- Story Network: our collection of parent-authored stories of living positively.
Talk with Other Parents
Many parents find talking with others who face similar challenges to be enormously helpful. This may happen through one-to-one conversations, participating in a support group, or attending a social or educational gathering related to your child's diagnosis. These are a few links to organizations that can help connect with other parents:
- National Organization for Rare Disorders (NORD) Database: search by your child's diagnosis to find a support group or other source of help
- Parent-to-Parent USA: learn if Parent-to-Parent has a program in your state. Scroll down to the US map to find contact information for a P2P program near you (Washington State residents can go directly to Parent to Parent in Washington State). Alternative support organizations in the western states include:
- Fathers Network: serves fathers and families of children with special needs in Washington State. Includes resources, support groups, essays from fathers, and newsletters.
- Sibling Support Project: national effort dedicated to the life-long concerns and opportunities of brothers and sisters of people who have special health, developmental, or mental health concerns.
- Support Groups Seattle Children's: contact your regional hospital or healthcare organizations in your area to learn if they offer support group opportunities.
Connect with Others Online
Families describe their experiences with the internet in a variety of ways ranging from immensely helpful to totally overwhelming. Some families find it supportive to participate on bulletin boards, email groups, or Facebook:
- Our Kids' email group: a list serve that has been around for many years and is welcoming of a families of children and youth with a wide range of special health and/or developmental or behavioral needs
- Madison’s Foundations: opportunity for online connections with families of children living with rare conditions
- Facebook: search for pages or groups related to your child’s diagnosis
Find Professional Help
There may be times when getting support from a professional is what you are seeking. There are a variety of providers to whom you can turn such as therapists, counselors, doctors, social workers, clergy, or spiritual leaders. Friends, family, or health care providers can often be your best resources for recommendations. Here are a few resources to help guide your search for professional support:
- Mental Health Providers: Tips on Finding One (from the Mayo Clinic)
- Mental Health Professionals: Who They Are and How to Find One (from the National Alliance on Mental Illness)
- Resources Directory
- Parent Support Program
- Real Families: Real Suggestions for Everyday Living - Managing Your Emotions
- Becoming a Family Advisor