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When a Little Girl Made a Joke About Having 'Special Needs'

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Entering the world of Down syndrome has been extremely humbling. For me it’s been like leaving my house for the first time. I thought I had it all figured out. I knew every nook and cranny of the house, but just one step out the door changed my perspective. By the time I made it to the mailbox, I realized much had been happening right under my nose. I just never thought to peek out the windows before.

Reflecting on this is incredibly important to me. The person I once was is the type of person I’m trying to reach today. I am trying to reach the people who are well-intentioned and caring, yet unfamiliar with Down syndrome and people with disabilities.

There is so much to know about Down syndrome (not to mention other disabilities). I have learned something new every day since getting that call from our doctor saying our child had Down syndrome. There’s no time to slow down either. The world is changing and its changing fast.

When it comes to Kara’s disability, I’ve been told to disregard anything that is more than five years old because it is most likely outdated. Think of where we’ll be in another five years! The future for Kara is so limitless that I can’t possibly imagine what she is going to accomplish.

I believe in her with all of my heart.

That’s not to say I don’t have times of doubt. There are days when it is very hard to put one foot in front of the other, when Kara seems to regress and I can’t help but blame myself. I’m still human and sometimes succumb to pessimism.

I was at a friend’s house for a gathering and I toted Kara around because she didn’t want to be held by anyone else. It was hot. I was exhausted. She was feeling especially heavy. But, of course, I wore a smile to cover the frustration.

After mingling for a while, I eventually stepped aside to take a breath. Kara and I found ourselves next to the back door, feeling the cool and welcomed breeze come through the screen.

That’s when I faced my greatest fear for the very first time.

A young girl walked up to the screen door and tried to open it. I was watching her, thinking she looked uncannily like my sweet, younger cousin. She seemed like a good kid, a nice girl. Then she called out for help. The girl announced she had “special needs” because she couldn’t figure out how to open the door. She laughed as she said it and I lost my breath.

It was the most awful feeling. She was standing right next to me and Kara. I had no idea what to do.

I felt embarrassed, dumbfounded, completely caught off guard. My first reaction was to look around. Did anyone else realize that someone made fun of “special needs” in front of my baby? I fought off the urge to burst into tears.

It might seem silly to some because I’m sure this girl meant no harm. I’m sure she didn’t think twice about what she was saying. Regardless, this is what I heard when she said those words, “I’m so dumb, I’m incapable of figuring out this lock, just like a person with a disability.”

I stood in shock. What was I supposed to do? Do I call her out? Tell her, “Hey, my daughter here has ‘special needs.’ Don’t say that.”  Do I pull her mother aside and tell her she needs to have a talk with her kid?

Then I did the worst thing possible — I did nothing.

I was about to leave right then and there. I needed to be alone. I needed to sit down and think about this, about how I was feeling and how I’m supposed to react. My stomach was turning, but I toughed it out a little while until I finally excused myself and carried my sweet girl out to the car. I didn’t make it halfway before I felt the tears release. In that instant, all my pessimistic emotions melted away. As I strapped her in her car seat I looked directly in her blue eyes and told her, “You remember, you are smart and you are beautiful, and I love you so so so much.”

This experience is what fuels me to write about our lives. I wish I could keep Kara from hearing these things, but of course, that’s just not possible. Brace yourself for when I encounter something much harsher than a silly, indirect comment from a little girl. My inner “mama bear” grows fiercer each day.

Follow this journey at Baby Lemonade Blog

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Originally published: June 2, 2017
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