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Finding Connection and Community as a Parent of a Child with a Disability

As parents at Exceptional Lives, when we write our Guides for parents, we imagine ourselves in your shoes. We remember what it was like early on in our school journey or how overwhelming it was to think about the transition process. We remember how tired we were when our children weren’t sleeping, or how stressful it was to go to a playground for fear of our child running off or melting down. We remember how much we wanted to share the joy of our children with other parents. When we write our Guides, we add the important information about procedures and protocol and standardized forms, but we also add tips for taking care of yourself. Because this is important, too.

We’ve noticed some trends

Many of you liked those sections of the Guides that encourage self-care. So when a team of Louisiana State University (LSU) students approached us to create an event, we wanted to design something for you: an opportunity to take some time for yourself to connect with other parents where you know your children are nearby and cared for.

The LSU students organized a paint night with childcare at a local coffee shop in Baton Rouge. Hear how one of the parents in attendance found community:

“As a parent, being in the company of other adults is stimulating. When those adults are also parents, you feel as though you are not alone. When those parents have exceptional children such as yours, then you experience the euphoria of being part of a community. I had that pleasure this past weekend at Exceptional Lives’ Espresso Yourself: Painting for Parents.

The Baton Rouge event was intended to be a time of relaxation for parents of children with developmental disabilities. A simple act of spreading paint across a blank canvas surprisingly had that power of relaxation. As the artist shared her knowledge, I was able to switch my focus away from everyday problems to the colors blending before me, putting my brain and body at ease. Such a nice change from stress and worry.

 

“As a parent, being in the company of other adults is stimulating. When those adults are also parents, you feel as though you are not alone. When those parents have exceptional children such as yours, then you experience the euphoria of being part of a community.”

 

Speaking of worry, the venue helped alleviate that as well. The right atmosphere is important to many parents, especially parents of children with special needs. Java Mama has an open play area, without noisy machines or flashing lights, where the parent could easily keep an eye on their children. In turn, the children had fun while making eye contact with Mom or Dad when they needed reassurance. And yes my darling girl, Mommy did see you go down the slide!

Having the time for us, without expectation, created the opportunity to chat and connect. How many times have we kept our thoughts to ourselves, for fear of judgment? Being able to talk openly with others who understood my struggle was freeing; sharing hints and ideas, what tips work and what don’t, and which apps are must haves. These exchanges were possible due to the event’s wonderful organizers and helpers.

Thank you to the women from risePR in the LSU Communications Department, who made us feel welcomed from the moment we entered the door. Thank you to LSU students in the area of childhood development, entertaining and interacting with the kids. Thanks to Randi Stephens and Anne Punzak Marcus for sharing their stories and passion and thank you to Exceptional Lives for hosting this event. It all made for a perfect Sunday afternoon.”

Jackie Snyder
Houma, Louisiana

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