Connecting With Other Parents of Children with Disabilities
Video: Connecting With Other Parents
Even when you are surrounded by a team of caregivers and professionals, it can feel isolating to be a parent of a child with disabilities or special health care needs. Sometimes it feels like no one understands your journey.
But trust us, other parents of children with disabilities and special health care needs are ready to be there for you! Parents are armed with experience to answer your questions: They can help you find a specialist, shed light on new behavioral therapies, recommend a company to use for durable medical equipment, or just listen. Those are only a few of the countless ways parents can help you. They might even respond with 2 very comforting words: “Me, too.” And, when you are ready, you can share something that might change their lives too.
You can find other parents of children with disabilities or special health care needs in your own city or across the country, just by searching online. They are in support groups, local community organizations, and online forums like Facebook pages or listservs. These groups might be general or might focus on specific disabilities like Down syndrome or autism.
Why Connect?
You will find parents who understand your fears, dreams, and sense of humor.
Finding a service for your child through a computer search is one thing, but talking to actual parents gives you insight into what that service was like for them (and might be like for you).
Surgeries can be scary. Finding parents who have been through the same surgery can give you crucial details the doctor might not think to share.
If your child’s IEP, or Individualized Education Program (sometimes called an “Individualized Education Plan") doesn’t make sense to you, and your meeting is in 12 hours, it’s not too late to find an experienced parent who can answer your question or offer guidance.
The future might seem complicated, but tips from other parents can teach you essential coping skills and show you the way forward.
How to Connect
There are hundreds of ways to connect with other parents, including through this website.
If you are feeling overwhelmed, just go to the Find Services, Groups, & Events search page, enter a keyword, and local resources will be listed for you to call, email, or visit their website. You can narrow down your search results by entering your zip code or city to find results near you.
A listserv is a group of people who “talk” online about shared interests. You can post questions or comments much like how you would write an email, and the message will appear to everyone who belongs to the listserv. Many listservs with specialty topics like dyslexia, for example, are “closed” meaning only those with a personal interest in that topic are approved to be members.
A support group usually meets weekly and gives you a chance to discuss your issues face-to-face with other parents and a group facilitator.
Many organizations have created Facebook pages for specific disabilities or conditions. You will need a Facebook account and might need to join or “friend” a specific group to post a question or enter a conversation. You can find Facebook pages by searching in your Internet browser for terms like “Facebook group autism.”
