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How My Son With Down Syndrome and I Are Finding Our Voices

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I often write about the joy and beauty of Down syndrome. And I mean every last word of it. However, there’s another side of the coin that I’ve struggled with for quite some time.

We live in a very divided society. There are people who believe that some of us are just too sensitive. We’re too easily offended. I like to think I’m just a decent human being who doesn’t delight in causing pain to other people.

I’m always surprised when I hear people say that words don’t really matter. I’ve always said that words have power. They have the power to lift you up or tear you down. That’s why I’m a writer. I love words. I especially love to use them to empower, advocate, and include.

It’s becoming pretty evident that my son Abel is going to have a speech delay. This is really common in children with Down syndrome and I’ve been bracing myself for this part of the journey as the path ahead becomes more clear to me. It’s not always easy. I couldn’t tell you the number of times I’ve heard Chris say, “I wish you could tell me what’s going on, buddy.”

Every day there’s a little more progress though. One new word at a time. An interesting little collection of words. Mama. Daddy. Ella. Gigi. Eat. Apple. Dog. Cat. Hungry. Donkey. Green.

Slowly but surely he’s finding his voice.

When you have a child with a disability, you quickly come to terms with the fact that people are going to make comments that will give you pause. Sometimes they hurt; sometimes they leave you flummoxed. More often than not, they aren’t malicious. Sometimes they are even well-meaning. How you react in these situations can make all the difference in the world.

I am very mindful of others’ feelings. I’m always carefully considering my words and how they might impact others. So when I found myself in a situation a few weeks ago that required me to be tactful and still speak up… I found myself in quite the quandary.

I was part of a conversation with a group of people who didn’t know me on a personal level. They didn’t know I had children at all, let alone a child with a disability. We were organizing an event, and two of the people began discussing another person who wasn’t present. They indicated that this person was autistic and that they weren’t really looking forward to working on the project with them because they were so talkative. One of them looked at me and jokingly said that I had better hope I wasn’t selected to be in a group with this person.

I knew I had to say something. I had to think fast before the moment passed. So I took a breath and said: “Actually, I have strong ties to the disability community. I would be happy to work with him.” I made sure to follow this statement with a friendly smile. There was a slight pause, and we quickly moved on. I felt satisfied that my point was made in a subtle, friendly way. No relationships were damaged in the process.

Assessing intention is key. Shame and humiliation are not tactics I ever care to use in these situations. I don’t want to shut anyone out or make them afraid to ask questions or engage in conversation with me.

I’m still navigating this process three years later. It’s a constant evolution. I know I will be faced with many situations when I must speak up for others, even when it’s hard. Especially when it’s hard. I will be given opportunities to educate and change the way people think. About disability, race, religion, human rights.

Abel isn’t the only one finding his voice. I’m still finding mine too.

Originally published: March 24, 2022
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