The Connection I Feel to Other Parents of Kids With Disabilities

The first time I remember it happening to me, I was reading a book by a community pool. My infant twins were blissfully asleep in the shade and my daughter was safely swimming with my husband. I was, in fact, relaxed.

I looked up when I heard laughter coming from the baby pool five feet in front of me. A teenage girl with Down syndrome had gone under the “Do Not Enter” sign and was splashing in the center of the water. She was laughing vibrantly and cooling her face from the hot sun. I could see her mother in the distance running towards her from the other side of the pool. I gently stepped forward and used all of the techniques I have learned to transition this young lady into a safer space. Her mother arrived in record time and got her to successfully leave the pool. The mother smiled graciously at me and left.

I couldn’t stop thinking about it. The girl was safe. The mother was polite. It was a calm scene. But I wanted to yell after her and connect with this woman.

But my daughter was not present. There were no clues that I was also a parent of a child with a disability.

 

Until this moment, I had not realized how desperately I wanted it to be obvious, to be “labeled.” I was almost appalled at myself; I despise labels. I advocate as a parent and a teacher that children are above labels and are more than ability and diagnoses, and yet I wished there was an unspoken way to let her know, “I get it! You handled that beautifully!”

It was the first time I realized how much of my identity was wrapped around being a parent of a child with a disability.

For so long being a parent of a child with a disability felt like I wore it as brand on my body. There were many days I tried to remove it, but I felt its permanence. I then recognized it became something like a “badge,” mostly at doctor’s appointments and IEP meetings. I flashed it when needed.

I like owning this “label.” I like sharing a knowing smile with other caregivers; it makes me feel connected. Helps me to shoulder the burden by knowing for each library, grocery store or park, there is a secret army of siblings, grandparents, or teachers that get it, too.

But the longer I wear my “label” the more I want to share it.

You don’t need direct experience with a child with a disability to have this “badge.” You just have to build a world where piteous smiles are replaced with compassionate ones. Where empathy is truly the connector.

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Thinkstock image by RobertoDavid