Parents Supporting Parents Through Social Media

Making new friends as an adult is difficult, even more so when you are a parent of a child with special health care needs. Many of my friends are people that I have met on the internet and on Facebook. Parent-to-parent support is so important for parents of children with disabilities. Even if it happens primarily through the internet. 

The internet was new when my son, Nathan, was born 22 years ago. We were given a diagnosis of a rare chromosome disorder that no one had ever heard of. The doctors had no information on what to expect, so, I connected by dial up internet and went looking for information and support.  

I found my first connections through Yahoo Groups. We were an active military family at that time. And I had reached out asking for help with a move. A woman, whose son was the same age and had a rare chromosome disorder, responded by email and we became fast friends. 

We supported each other by email and phone calls as we navigated our children’s early years. We eventually were able to meet in person. We have followed each other from Yahoo to Facebook and continue to offer support as we cheer on our now adult children.  

As the internet has grown, so has my group of internet friends. It is much easier to find connections to people whose children have similar diagnoses or specific needs. Facebook Groups have been a lifesaver. They have allowed me to connect both to people around the world  and to people within my neighborhood. Through these connections, I have found the support and help I need, from people who understand my innermost thoughts and feelings.

Locally, my internet friends offer insight on physicians and other supports that will help our children. There is also sharing of outgrown or overstocked equipment and supplies. At the state level, there is help with navigating Medicaid and support on how to advocate for our children’s rights.. 

I have also found friends in specialized groups, such as a group that connects athletes to jobs. And a group of runners who run with children and adults with disabilities. It is heartwarming to see older, more experienced parents sharing their expertise with new parents. 

I have cried with moms as they announce their child’s passing. I have cheered when they met their goals and just listened when they were venting. My internet friends have all done the same for me. I love the support and understanding that I can get from someone that I have never met. As you care for a child with a disability, connecting with other parents is so important.