Caring for Your Family & Friends

When your child is diagnosed with a disability, chronic condition, or special health care need, it can be hard to accept and understand, and it can affect your whole community of family and friends. Family members, such as grandparents, aunts, uncles, and cousins, may each react differently to a child’s diagnosis, and friends may also react in different ways. This page is meant to help parents of children with special health care needs communicate with family and friends about their child's condition and receive needed support.

Family and friends are important and play a vital role in many cultures. Often, all you want as a parent of a child with special needs, is for your family and friends to understand your child’s condition and needs, as well as your own need for support. Within your group of family and friends, you may see that some are much more comfortable with your child than others. It’s important to remember that many of your family and friends have not been around someone with a disability before, and they might benefit if you are able to teach and help them to be more understanding and aware.

It is also helpful if you understand that some of your family and friends want to be more involved but do not know what to do or say. You can help break the ice by asking if they want to learn more about your child and offering to teach them. Sometimes, this opportunity to talk to you, ask questions, and understand is all a friend or family member needs.

Family and friends offer support in many ways, and often they are the only people parents trust to help take care of their child. When your family and friends offer to learn about and help care for your child it can be such a relief. If they offer, make sure you teach them everything there is to know about caring for your child. Help things to go smoothly, and build your caretakers’ confidence by giving them emergency numbers and information to give health care providers about your child. If your trusted family or friend doesn’t make the offer, don’t take it personally. Everyone has different strengths and can help in different ways. A friend that isn’t comfortable caring for your child while you run errands might be just the person to help out by building a wheelchair ramp or installing a much-needed safety door.

Involve your family and friends in your child's life as much as possible. One mom says, "I love that my son has a favorite uncle, and when he sees him he knows he gets a big bear hug. He also has many cousins his age or younger who are very comfortable around him. In the beginning we taught them about the things that they saw as different, and now things like tracheostomies, feeding tubes and non-verbal communication are normal at family gatherings."

Nowadays many grandparents are raising their grandchildren. Often other family members, like aunts, uncles and even older siblings find themselves taking on the role of caregiver for a family member with special needs. Many of the resources for parents of children with special needs will be just as helpful for family caregivers, but like parents, these caregivers may want to connect with someone who knows just what they are going through. There are often local support groups and online support groups for these unique families.

For information and support for family and friends, see links in the Resources section below.