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Caring for Your Family & Friends

When a child is diagnosed with a disability, chronic condition, or special health care need, it can be difficult to accept and understand, and it can profoundly affect your whole community of family and friends. Extended family members, such as grandparents, aunts, uncles, and cousins, may each react differently to a child’s diagnosis, and friends will also react in different ways.
Family and friends are important to us, and play a vital role in many cultures. Often, all we want as a parent of a child with special needs, is for our family and friends to understand our child’s condition and needs, as well as our own need for support. Within your group of extended family and friends, you will see that some are much more comfortable with your child than others. It’s important for us to remember that many of our family and friends have not been around someone with a disability before, and they might benefit if we 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 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 providing them with emergency numbers and information to give healthcare providers about your child. If your trusted family or friend doesn’t make such an offer, don’t take it personally. Everyone has different strengths and offers something different. 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 ramp or installing a much needed safety door.
Involve your extended 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 commonplace at family gatherings."
Nowadays many grandparents are raising their grandchildren, and often other family members, like aunts, uncles and even older siblings, also 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 extended family and friends, see links in the Resources section below.

Resources

Information & Support

For Parents and Patients

Family Caregiver Alliance
Here, you'll find information about education, services, research, and advocacy to support family caregivers. A navigator helps locate services.

When Family Doesn't Understand
When the chips are down, we expect our extended family (parents, adult siblings, aunts, uncles and cousins) to be there for us. Sometimes they are, but sometimes they aren’t. From MDA.org.

Grandparents of Kids with Special Needs (GKSN)
On our simple website, you’ll have a chance to meet other grandparents through our Yahoogroup or Facebook groups, share ideas for supporting your kids and grandkids.

Grandparents Raising Grandchildren (USA.gov)
If you take care of grandchildren, find grandparent programs in your state and get information about benefits, assistance, and more.

A Grandparent's Guide to Autism
This family support tool kit is designed to help guide and encourage grandparents to establish positive and successful relationships with their grandchildren and the rest of their families.

GrandFacts
State fact sheets for grandparents and other relatives raising children.

Services

Family Support Organizations

See all Family Support Organizations services providers (7) in our database.

Local Support Groups, General

See all Local Support Groups, General services providers (70) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Author: Tina Persels - 6/2013
Content Last Updated: 2/2014