For many, pediatric home health care provides support and guidance to families raising a child with special needs. However, feelings of isolation are common. It is important to remind yourself that you are not alone, there are others out there who can relate to your circumstance.
When your child is diagnosed with an illness, it can feel like the world is crashing down around you. Sherry R. Latson writes in the Learning Disabilities Association of America, “Parenting is particularly difficult and stressful when a child is diagnosed with an illness or disability. All of the attention is focused on helping the child but parents also need assistance in coping with their own feelings and frustrations.”
To help you, we are sharing eight support groups that can provide you the community and fellowship you need to be the very best parent and caregiver you can be.
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.
Different Dream says, “Dads and moms in the hospital with seriously or terminally ill kids feel alone.” The organization, like many on this list, provides a virtual community to help alleviate some of that loneliness.
A website with a lot of great resources, 5 minutes for special needs puts you in touch with other parents raising children with complex medical needs. You can search for resources by diagnosis or filter your search around topics such as "surviving a hospital stay."
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 support resource for all caregivers, not just parents raising children with special needs. They are a non-profit organization for caregivers to find respite and support.
When Elissa Lewin, founder, became a caregiver, she sought the help of a massage therapist, Nancy Brown. Nancy was a caregiver to her son with autism. They discussed the prospect of having a place to go and be taken care of the way they were taking care of their loved ones. This conversation led to the start of their program.
When you are there, you will have a chance to take care of yourself without feeling guilty. You will also have the opportunity to meet groups of other caregivers, getting informal and structured support.
6. The Arc
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. Contributing to this magazine yourself may be a good way for you to be involved and tell your story. The perspectives you can add to this magazine can be helpful and encouraging for other parents looking for support.
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.
If you are a parent raising a child with complex medical needs, pediatric home health care can help you, learn more today.