7 things you can learn at a kickoff event for Down Syndrome


1. People-first language. When we were new to the world of disability, we thought the whole “person with Down syndrome” structure was cumbersome; it was so much easier to say “Down’s kid.” We thought it was PC nonsense. But I’ve changed my mind, and you should too. Here’s why: you don’t walk around labeling other people by their less-than-“perfect” traits. “Hey, look at that cancer woman.” “This is my selfish kid.” “___is that pimply girl.” To do so implies that said trait is the only thing about that person worthy of note. It reduces them to a single part of who they are. People with a disability are people first, and should be referred to with the full respect granted everyone else in society.

2. The same can be said of families. We are a “Down’s family,” but that’s not all we are. We’re also a musical family, and an Italian-German family, and a foodie family, and an NFP family. (I could go on, but you get the idea.)

3. Disability truly is, as Emily Pearl Kingsley wrote, like landing in Holland instead of Italy–different than you expected, but not bad.

4. There is no standard itinerary for a child with Down syndrome. Just as with typically-developing children, there is a wide range in size and skill level at every stage of the game. Judging by what I saw on Sunday, in fact, it’s even wider than for typically-developing kids.I saw a sixteen-month-old who looked like nine months, and a fifteen-month-old who looked like eighteen months. I saw five-year-olds who were talking way better than Julianna and five-year-olds who were far behind her.

5. Related to that: there is no one-size-fits-all personality. That ought to be obvious to anyone with a reasoning brain, but you’d be amazed how often we all hear our kids referred to as angels who are so happy and sweet all the time. Um. Please don’t patronize us. All children are happy sometimes and royal brats at other times. To try to lump kids with DS (notice that “people-first language?”) into a single category makes everyone nuts, especially the siblings who KNOW their brother/sister is NOT an angel!

6. Never try to guess the age of a person with Down syndrome. I guessed 14. She was 25.

7. Cake pops are yummmmmmmmm. How can I have gone 37 1/2 years never having had cake pops?

(I would love to share more photos but I didn’t ask permission! Ah, well. Can’t have it all.)

7 thoughts on “7 things you can learn at a kickoff event for Down Syndrome

  1. othermother6

    8. Kids with Down syndrome love bounce houses. So do their brothers and sisters! It was a great event. Congratulations – your hard work has come to fruition!

  2. As for #1, I used to think the same as you! Then when my niece was diagnosed with autism, I realized that if I always called her “my autistic niece” or always pointed her out as “the autistic one” I would lose some very endearing qualities of her in the label. Calling her my niece with autism isn’t always better (I like to just call her my niece) but I find that sometimes if I am relating something about her that relates to her autism, it works out.

    Cake pops are awesome, I agree. And I often wonder why these weren’t a staple at classroom parties when I was growing up. Seriously.

  3. I’ve never heard of cake pops.

    I totally ‘get’ numbers 1 and 2. I never wanted to be labeled as the “cerebral palsy” or “CP” kid. I still don’t. I’m more than a person who “walks funny”. 🙂

  4. What a great list! I completely agree about people first language. Language is so powerful–and when people would give me that PC argument, I used to be so irritated but now, I make myself take a deep breath as if I have never explained the concept before and I give examples like yours. “Would I refer to you as myopic guy?” High-blood pressure guy?” Bunion guy?” How about yellow teeth guy? Usually, people get it before I get to the yellow teeth example, but I save that one just in case.

    I’ve never had a cake pop. I am going to have one tomorrow.

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