Special needs families find support through Facebook groups

Not everyone understands what it’s like having a child with special needs. And while the Facebook moms groups popping up might include special needs moms, wouldn’t it be nice to find a group of people who share your challenges and joys?

Luckily, there are a few that do just that.

One of the newest groups for special needs families is C.I.T.Y. of Support, which has more than 2,500 members. Ask questions (anonymous postings allowed through moderator), attend its events and get great info on raising kids with special needs. It was created by Beth Deiter, a speech-language pathologist and mom. She says she wanted to create a place, both online and in person, for families to connect. 

We caught up with Deiter recently:

What impacts on families have you seen especially from your Facebook group? 

What started as a Facebook group and a way to share experiences/make connections with others has grown into an organization that hosts education roundtables, coordinated playdates, special celebrations and community outreach initiatives. It’s wonderful to attend an in-person event and see parents who have only communicated online finally meet each other in person. Hopefully families are finding a safe space to connect with others, ask questions, provide advice, learn about resources, celebrate milestones and commiserate with others.  

Why do you think Facebook groups work for parents with kids with special needs?

Facebook has changed the way we connect with others, allowing for the creation of so many different groups. As a mom, I am a member of several local Facebook Groups who share my common values, interests and/or geographic location. Because of their convenience, I tend to pose questions/search for answers in these groups when handling specific situations, as I know the responses will be from people similar to me. Access is available at any time of day, and I often learn new and helpful information. 

One piece of advice for families exploring Facebook groups?

I would emphasize that the group (unlike our Facebook page/newsletter/website) offers a space for discussion, conversation and collaboration. I would encourage members to observe the “tone” of a new Facebook group prior to actively participating. Observe whether posts are responded to with judgment, arguments, negativity or drama. In C.I.T.Y. of Support, I believe our tone is one of the primary reasons that we have created such a supportive community. We are accepting of sharing different viewpoints/ideas; professionals understand that this is not a marketing platform; and parents, although able to share negative experiences generically, are discouraged from naming specific clinics/providers in their post. These general Facebook Group guidelines have created a safe, comfortable space for parents, providers, family members, and community members to interact with each other regarding a shared interest: the best care and support for their child.

More places to connect

Here are a few other local groups we find supportive and helpful:

Special Needs Community of the West Suburbs of Chicago; 650 members. Its members share reviews on products, ask questions and link to events and activities they think other families might enjoy. 

IPADDUnite; 3,800-plus members. A group dedicated to families with a teen or adult family member with a developmental disability. A great spot to ask about SSI, Medicaid and other financial concerns, teen issues and more.

I Am Who I Am; 3,322 members. Its members share inspirational stories, news and events. Members are able to ask questions to the group.

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This article originally appeared in the Summer 2019 issue of Chicago Special Parent. Read the rest of the issue.

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