Connecting With Other Parents of Children with Disabilities

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.

Navigating Bias, Finding Allies

When you find your people, you just know it. You can breathe a little easier. It’s a sense of community or a bond with someone who just gets it and understands you, your child or even your culture. 

Every person is like a puzzle made up of different cultures and identities. This includes race, skin color, faith, gender, sexuality, age, language, location and more. The more pieces of the puzzle you have in common with someone else, the more they may understand what you face daily on a deeper level. You might call them allies.

Having allies can help protect you, your child and family from bias, prejudice, racism, ableism or discrimination due to misunderstandings or judgments about a disability, skin color, religion or something else. Bias creeps up in everyday life. It’s an unfair opinion or action that can make things worse or better for some more than others.

As you connect with other parents of children with disabilities and special health care needs, keep an eye out for those special allies who cross your path and can make your journey a little easier. Also see our article: Stories on Navigating Bias and Finding Allies.