My Story: A Letter To People Who Stare At My Teen Daughter With Down Syndrome

I saw you when you looked up with the familiar, inquisitive stare. When our eyes met, I noticed it.

Fear? Anxiety? Maybe.

I know when you see us, we may look a little “different,” and we may act differently, too. When we walk through the grocery store aisles, or any public place, I usually hold my daughter’s hand, or she holds my arm as we walk.

She can tire easily and is easily distracted. Sometimes she makes loud noises — not always words, but still, her way of expression. For her, a simple trip can be complicated. The lights, the noise, and the people; can be exhausting.

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When she was just 2 or 3 years old, I don’t think many people took notice, and we didn’t receive all these curious looks. But she is 13 now. She has Down syndrome. She is awesome.

To the person who feels awkward around my teen, I get it. The unknown can be scary. I honestly felt that way when my daughter was born.

At 22 and with an uncomplicated pregnancy aside from preeclampsia, I had no idea my daughter would have an extra chromosome. I was terrified then, only because of my lack of knowledge. I’m not excusing your stare, but I do understand it.

Go ahead and ask me. I mean it. You can ask me if she has Down syndrome. You can even ask me why I hold her hand. I’ll probably answer and explain that she has some difficulty with sensory processing.

For her, that means she can have a hard time interacting with people and her environment. Sometimes it means she has difficulty walking — hence the hand-holding.

You can even ask me if she can talk. I’ll probably tell you that verbal communication is hard for her, and she has a difficult time telling me her basic needs. I usually have to use my mother’s intuition to guess what’s going on. She does receive speech therapy, and my prayer is one day she will be able to say, “Mommy, I love you.”