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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by RobertoDavid

TOPICS
,
JOIN THE CONVERSATION

Related to Cri du Chat Syndrome

Happy little girl having lots of fun on a jumping castle while sliding.

What 'the Giant Slide' Reminded About Parenting My Child With Cri Du Chat

My daughter was recently invited to a birthday party at one of those inflatable lands of bounce. As a result of her rare diagnosis, Cri Du Chat syndrome, which includes hypotonia, this tends to be a place she spends more time giggling than bouncing, but nonetheless she has a wonderful time. For this particular challenge, [...]
family mother and child daughter keep warm and look out the window on a rainy autumn day

I Thought I Knew the Power of Words - Until I Met My Nonverbal Daughter

It started in my basement. Each stuffed animal would sit on top of the ping pong table waiting to find out if they passed the spelling quiz. Beary could never spell “because” correctly and would have to stay after school to get some more help. Words were never his thing. Luckily for him – they [...]
Jim Chalmers running.

This 'Marathon Man' With Cri du Chat Syndrome Defies Stereotypes

In the wake of the 2015 Special Olympics World Summer Games in Los Angeles, my family and I attended a send-off celebration for Minnesota athletes traveling to California to compete. We strongly believe in their mission of promoting inclusion and providing opportunity for people with disabilities. It’s making a difference, and we’ve seen it specifically [...]
Ella

When the Experts Were Wrong About My Daughter With Cri du Chat Syndrome

Cri du Chat (CDC) Awareness Week is upon us again. The reason for this week is very important to raise awareness for my daughter Ella’s  syndrome. When she was diagnosed, the experts told me Ella would never crawl, walk or communicate. She would die young and her quality of life would be limited. A Google [...]