Today, My Daughter With Down Syndrome Said Her Name


Today, my daughter said her name. You might not think this is a big deal — kids who are almost 3 years old say their names all the time. But my daughter hadn’t yet. My daughter is a beautiful, smart, loving little girl who has Down syndrome. And like many people with Down syndrome, she struggles to speak.

We’re not sure why she struggles. It could be the muscle weakness commonly associated with Down syndrome and genetically programmed into every cell of her body. Or perhaps it’s the 15 months she spent being fed primarily through a tube in her stomach, leaving the muscles in her mouth and throat underused and weak. No matter the cause, my daughter has communicated using sign language. While she has few spoken words, she has around 200 signs, and can easily tell us what she is thinking almost all the time. But most people, especially her peers, don’t sign, so as she approaches preschool this fall, we decided to work with an augmentative and alternative communication device (AAC). While there are many different AACs, my daughter uses an app on an iPad and produces language by selecting button sequences that correspond to words she wants to communicate.

Some people might not think my daughter is “saying” her name when she uses this device. Most of us are fortunate enough that when we push air through our vocal cords and alter our tongue position, an endless combination of sounds come out just how we want. And those sounds effortlessly communicate our thoughts and feelings, our pains and our joys.

This process isn’t so different from what my daughter is doing. Although the sound of my daughter’s name wasn’t generated by her vocal chords, when she presses that button sequence, she owns every sound by telling you her name.

 

Many parents are understandably scared when they find out they have a child with Down syndrome or any other number of disabilities. But things are getting better. In 1900, the life expectancy of people with Down syndrome was 10 years. In the 1980s, it was 25. Today, it’s over 60. And its not just the years — the quality of life has gotten better, moving away from complete rejection, away from institutions and increasingly mainstreamed into society.

Children born with Down syndrome today, will live and grow in a world of unprecedented support, acceptance and opportunity. Those who could have never spoken a single word are now getting assistance to communicate their needs and thoughts using technologies we would never had dreamed of, even when I was a child. And with all of these advances, what’s to say there won’t be even more to come?

When I heard my daughter say her name, it felt magical. Her name, more than anyone else I know, is perfect for her, and epitomizes exactly who she is. And I’m so, so lucky to live in a time when I get to hear her say it.

So, what’s my daughter’s name? I’ll let her tell you.

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