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?