My Daughter Is Much More Than One Word

I've never been comfortable using words that soften things. When my kids ask me a question, I give them the most honest answer that I think they're able to handle.
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When my son Tom was 8, he needed a tooth pulled. Or as the pediatric dentist we went to said, "wiggled out."

"Mom, that means he's pulling my tooth out, yes?"

"Yes, Tom."

Then the dentist went to give him a shot of "silly juice," which would make his mouth feel "funny."

"Mom, that's Novocaine, right? And, my mouth is going to feel numb, right?"

"Yes, Tom."

I don't think we were ever that dentist's favorite family.

I've never been comfortable using words that soften things. When my kids ask me a question, I give them the most honest answer that I think they're able to handle.

My parents did the same for my sisters and me, and I found it less frightening, not more.

I love words. I'm a writer who's married to a writer. We've been teaching our children that words can empower, inspire and educate. They can also anger, sadden and hurt people.

Choose your words carefully was a phrase I heard often growing up, and I use it myself with my kids.

So why does the "R" word bother me so much?

Retard. Retarded. Retardation.

The term is used to medically define developmentally delayed people with below-average IQs.

It's just a word. Right?

Or is it?

I remember clearly the afternoon I sat at my kitchen table listening on the phone while a pediatric neurologist explained the results of my 2-year-old daughter's MRI.

The doctor explained that because of the brain damage that showed up in the MRI, my daughter's larger-than-average head size and the shape of her eyes, it was possible that Lizzy could have a very serious genetic disorder. The doctor told me it was likely that her skills would start to decline and that we should look out for any signs of deterioration.

She was 2. She was barely talking. How much more could she degenerate? My heart stopped and our world changed.

All I could think about was children making fun of my sweet daughter.

My own memories of girls being mean to me or kids calling me stupid came flooding back to me. I was a typical girl with dyslexia. If kids were mean to me, what were they going to do with a child whose disability was so apparent? What were they going to do to my child who didn't have my gift of being able to communicate?

Would my daughter only know ridicule and pain? What would her future hold?

Lizzy's IQ tests puts her functioning in the level that the "R" word would pertain to. She has a very hard time communicating. Her voice can sound altered and kids, understandably, have made comments that she talks funny.

When she was 5, we were touring the school at which she would attend kindergarten. We walked into the classroom of the speech therapist who had a class going on. I helped prompt Lizzy, and soon, she was talking a bit to the teacher.

One child commented that her voice sounded very funny. I never mind explaining Lizzy's issues to kids and was just about to do this, when a little boy turned to the child and very excitedly said, "but she is talking. Lizzy is talking."

As I looked at the little boy, I realized that two years earlier, he had been in Lizzy's preschool class for kids with speech difficulties. She could barely say anything back then.

He remembered her and was so happy that she could talk. He didn't care what her voice sounded like. She wasn't a diagnosis, she was his friend LIzzy.

And that is my problem with the "R" word.

In its most clinical term, it refers to one side of a person. The side that can be measured by an IQ or other developmental test.

When the "R" word is casually used to describe either ourselves or someone else when they do something we deem stupid, dumb or absent-minded, I realize that we're not trying to hurt people with a real disability. But how could it not be insulting to someone who is just trying to do their absolute best?

Lizzy is an amazing, complex 13-year-old girl. She has a variety of interests and desires. Her long list of admirers not only include me and her dad, but also her two brothers, three adoring grandparents, many aunts, uncles, cousins, teachers, neighbors and friends.

She loves Monty Python, princess movies, fashion, art, computers and all things pink.

Her disabilities are only one part of who she is. They do not have to define her.

When we use outdated terms to describe people, we are not only marginalizing them, we make it easier to ignore their humanity. We also make it that much harder to really get to know some amazing individuals.

People like Lizzy.


This piece was previously published on Kathy's site, My dishwasher's possessed!

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