**This post is an updated version of one published in January 2014. You can read the original post here.
When your child is diagnosed with a serious injury, illness, or disability, it can feel like the world is crashing down around you. Feelings of isolation are common, but it is important to know that you are not alone. In fact, more than 10 million children in the United States have or are at increased risk of having a chronic physical, developmental, behavioral, or emotional condition that also requires health and related services beyond that is required by children generally.*
Below is a list of groups that can provide you with the support and guidance you need to help you, your child, and the rest of your family navigate this new world.
- Mommies of Miracles
The mission of Mommies of Miracles is to eliminate the isolation mothers of children with complex medical needs experience daily by providing an extended network of resources, grief support, and hope.
Their organization is a growing, international, peer-driven support group of mothers who have children of all ages, with complex care needs, many with rare or undiagnosed conditions and developmental disabilities.
Different Dream defines themselves as “a gathering place for parents of special needs children.” Their website provides resources and literature, with a blog that addresses what parents of special needs children often encounter.
Globaltrach.org is a non-profit collaborative with a mission to increase awareness of tracheostomy care and quality of life for those in need. They’re making this possible by bringing together “A multidisciplinary team of physicians, nurses, respiratory therapists, speech therapists and patients working to disseminate best practices and improve outcomes around tracheostomy care.”
For families, joining this collaborative is free. You get access to the patient and family forum, and you have the ability to post to their blog and share your story.
Nancy’s House is a different kind of support group. It is a respite house in Pennsylvania where caregivers can come for relaxation, counseling, meditation, and therapy. There are one and three-day retreats. Payment is on a sliding scale.
The Arc is an advocacy organization, their mission is to “promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetime.”
This organization is not just for the parents and family members of special needs children and adults. This organization is meant for everyone. You can donate, volunteer, or join via their website. Going to a local chapter website or location will give you even more resources, events, and programs to take advantage of.
This online-only magazine is free and written solely by parents of special needs children. The fellowship provided by this e-magazine is vast. You can submit your own posts for others to reference, search for articles by topic, or browse their database of information. You can also find articles that direct to local resources and organizations.
Joining the Caregiver Action Network (CAN) is free and gives you access to forums, information, and a large community of caregivers. CAN is a non-profit organization devoted to providing support to families and caregivers at no cost.
There is a forum for caregivers, a blog of caregiving stories, and a list of organizations and foundations to strengthen the support to caregivers of all kinds. You will also have access to local volunteers who can provide education about diagnosis and advocacy training. These volunteers are or were caregivers themselves, so they can relate to the stresses you are working to overcome.
How to find a local support group
While the support groups above provide valuable information and assistance, sometimes you want to locate a resource that’s close to home. Typically, some groups are led by a facilitator while others may have a guest speaker followed by a discussion period. Here are some tips for finding local groups:
- The quickest way to find support group information is most likely online. You can search relevant terms such as “pediatric support group” or “special needs parents support group” and then add in your area or town so the results can be filtered by what’s local to you.
- In addition to searching for groups that support parents of children with special needs, you may want to look for groups that are specific to your child’s diagnosis. There are many resources for children with autism, SMA, cerebral palsy, muscular dystrophy, and more.
- Contact your child’s school, non-profit organizations, or local children’s hospitals for information.
- The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products within the community. Use their interactive map to find a center that serves your state.
- Ask a home care provider even if your child isn’t receiving care. Some agencies will run their own or are connected with area groups. BAYADA has great resource information for parents.
*Kogan MD, Strickland BB, Newacheck PW. Building systems of care: findings from the National Survey of Children With Special Health Care Needs. Pediatrics. 2009;124(suppl 4):S333–S336pmid:19948596