How Julianna Feels About Having Down Syndrome

Have I mentioned this is the last time we have proof that she had her glasses?

Have I mentioned this is the last time we have proof that she had her glasses?

Last week Huffington Post ran a story on “how I told my 7-year-old he has Down syndrome.” I admit I saw that headline and thought, Huh. He doesn’t already know? See, we’ve always made Down syndrome an ordinary part of the fabric of life in this house, like bad eyes or an aptitude for music–it simply is. You don’t waste time analyzing good and bad or trying to shield the kids from the knowledge–you just weave it into ordinary life, and there it is.

Last night at dinner, it came up in the context of Christmas shopping. Alex had wanted to get Julianna a jewelry/bead-making kit for Christmas, and Christian told him, truthfully, that he and I had wanted to do it, too, and chose not to. The problem is, she’s not quite ready for it yet. We want her to be, but she just isn’t. It’s a great idea, but she doesn’t have the interest in and skill to do those sorts of things yet.

But “If she didn’t have Down syndrome, that would be…” was as far as he got. Because at the words “Down syndrome,” Julianna lit up. “Oh! Dow see-dwuh?” she cried.

Christian smiled at her. “Who has Down syndrome?”

“ME! YAY!” shouted Julianna, putting both fists in the air and pumping them repeatedly.

It’s one of those stereotypes that lives on because it so often turns out to be true: people with Down syndrome tend to have really, really high self-esteem.


(Disclaimer: she did think we were talking about ‘Down syndrome group,’ which is what we call the bimonthly social hour we do with other T21 families in the area. But it’s a great story anyway.)

9 thoughts on “How Julianna Feels About Having Down Syndrome

  1. Cute story, but I’ll add that my son’s autism bothers me and his father (and the rest of society) far more than it bothers him. He is perfectly happy being an over-aged unemployed teenager who lives with and is supported by his parents, who spends his days doing household chores in teenaged fashion and surfing the web. His lack of social interaction and career goals and achievement bother us, but not him.

  2. Karen A.

    Daniel always has known he had Down syndrome and that he was adopted. He would respond just like Julia did. “Me! I have Down syndrome,” or “I’m adopted” if anyone said anything about either one. He didn’t at first have a clue what either one meant. I think he understood it better after he attended the NDSC Youth and Adult conference, but even now — it just doesn’t matter to him. He’s fine with who he is, and it’s never discussed. Raising his brother with FASD is going to be very different – because he knows he’s different from the other kids, and he doesn’t like it. 😦

  3. This IS a great story. And maybe your sharing these kinds of moments help others who have children with Downs Syndrome. That it is good to be open about it and have it be woven into your ordinary life.
    Thank you.

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