I Want to Be Labeled

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, put on my invisible cape, and used all of the techniques I had learned to transition this young lady into a safer space. Her mother arrived in record time and as if reading from the same script, 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. I didn’t want gratitude. I wanted to connect to this woman.

But my daughter was not present. There were no clues that I too had been trained to speak this language.

Until this moment, I had not realized how desperately I wanted 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 diagnosis, but yet, I wished there was a Scarlet mark on my head that 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 special needs parent.

For so long, I wore it as brand on my body. There were so many long days I tried to remove it, but felt its oppressive permanence.   I then recognized it became a badge, mostly at doctor’s appointments and IEP meetings.   I flashed it when needed.   However, there came I moment when I wish I still had my jean jacket from the 80s. Right there in between the Peace Sign and Say No To Drugs” would live my button- Awesome Special Needs Mom! (in florescent lettering of course).   And ultimately, overtime, it became an invisible crest. It is as if I am permanently carrying the mug: 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. 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 too get it.

I like knowing I earned this label. Hundreds hours of training, workshops, practical experience.   I have earned a PhD in parenting a few times over at this point.

But the longer I wear my label, I want to share it.

You don’t need direct experience with a special needs child 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.

And if you know someone who proudly should wear the “I get it” button, let me know – I am sure I have an extra button maker from the 80s in my attic.

 

 

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6 thoughts on “I Want to Be Labeled

  1. Hi Leah,
    As the mother of a sick child and a grandmother of a special needs child, “I get it”. Thanks for putting into words what so many of us feel.

    Like

  2. Your ability to express such deep and beautiful feelings is a true gift. Thank you for sharing and giving words to so many others who feel what you feel but never had the words. Your ending, “You just have to build a world where piteous smiles are replaced with compassionate ones. Where empathy is truly the connector” is something that will stay with me. I intend to share your blog with students enrolled in my psychology courses; I am sure it will make for more empathetic and meaningful discussions.

    Like

    • Hi! Thank you so much for reading and writing. I would be so honored to have your share with your students! Maybe one day I could come sit at your kitchen table to chat more.

      Like

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