You Really Need Your Village As a Special Needs Parent

by Leah Moore
Originally Published: 
Leah Moore

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 basking in this rare moment of complete relaxation — no one needed me for anything. Glorious.

Suddenly, though, I heard laughter coming from the baby pool, 5 feet in front of me. I looked up to see that a teenage girl with Down syndrome had crossed under the “Do Not Enter” sign and was splashing around in the center. She was laughing vibrantly as the water hit her face.

I could see her mother in the distance, running toward us from the other side of the pool. That’s when I put on my invisible cape, gently stepped forward, and used all of the techniques I’ve learned to transition this young lady into a safer space. Her mother reached us in record time, and as if reading from the same script, successfully got her to leave the pool. She smiled graciously at me and then returned with her daughter to the other side of the pool.

I couldn’t stop thinking about it. The girl was safe. The mother was polite. It was a calm scene. Still, I wanted to yell after her. It wasn’t because I wanted to hear a thank-you. What I wanted was to connect with this woman. But my daughter was not present — there were no clues that I, too, had been trained to speak this language.

Until that moment, I hadn’t realized how desperately I wanted to be labeled as a special needs parent. I was nearly appalled at myself. As a parent and a teacher, I despise labels and advocate that children are above them, that they are more than their ability and diagnosis. Yet there I was, wishing there was a mark on my head 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 up in being a special needs parent. For so long, I wore it as brand on my body. There were many dark, exhausting days when I tried to remove it, but I couldn’t free myself from its oppressive permanence.

Then, as a means of survival, it became a badge that I flashed when needed, mostly at doctor’s appointments and IEP meetings. But as I grew in this role, there came a moment when I wished I still had my jean jacket from the ’80s. Right there, in between the peace sign and the Say No To Drugs” pin would live a new button: Awesome Special Needs Mom! (in fluorescent lettering of course). This badge evolved into an invisible crest.

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Now I feel as if I am permanently carrying a coffee mug emblazoned with these words: I Am A Special Needs Parent. What’s Your Superpower?

I like owning this label. I like sharing a knowing smile with other caregivers. It makes me feel connected, a feeling that is so often lacking for those of us in the special needs community. It helps me to shoulder the burden by knowing that for each library, grocery store, or park, there is a secret army of siblings, grandparents, and teachers who get it too.

I like knowing I earned this label — through hundreds of hours of training, workshops, and practical experience. I have earned a PhD in parenting a few times over at this point. But the longer I wear my label, the more I want to share it. I want people to see it.

And you don’t need direct experience with a child who has special needs to wear this badge. You just have to build a world where piteous smiles are replaced by compassionate ones. Where empathy is truly the connector.

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