Julianna, Unlimited

We made the decision on the spur of the moment. “Julianna, do you want to go to Children’s Liturgy? Like story time at church?”

“Yah!” she said happily, and Alex, beaming with pride, led his two younger siblings out of the church with the rest of the kids.

He returned fifteen minutes later, wearing that long-suffering expression that means little siblings are a pain in the neck. “Did Julianna try to run away?” I whispered.

“Well, a couple times. I had to take her to the bathroom.”

Oh, my. That’s way above and beyond the call of duty for a seven-year-old.

Big surprise: the next week, Alex decided he had outgrown children’s liturgy. So I followed the other two at a distance, giving them the space to go on their own. I sat at the back and kept an eye on Julianna. (Why the 5yo, and not the 3yo? Hm. Keep reading, and thou shalt understand.)

For a while, she did great. But then she saw two boys crawling under the TV cabinet and thought that looked like more fun than stories about Jesus. The leader redirected her, and she settled back down. Two minutes later, she clambered to her feet and began circling the outer rim of the crowd, bopping people on the head: duck…duck…duck…duck…

I intercepted her before she reached “goose.” I made her sit down, and I retreated…but not far. Three minutes later, she looked around, stood up, wiggled her bottom, and plopped down in the lap of some poor little girl two years younger than herself. By the time I got there, the girl had the shell-shocked look of one whose personal space has been summarily violated.

Julianna sat with me for the remainder of Children’s Liturgy.

Aside from the speech delay, the thing that sticks out the most about parenting my daughter with Down syndrome is how difficult it is to teach her limits. She doesn’t “get” it. No, I take that back. She understands that you have to take turns with toys. But when she sees something belonging to an adult, or something left unsupervised, she thinks it’s free for the taking. If she’s thirsty, she’ll go grab someone’s glass, even if it’s a complete stranger. If she sees someone’s purse (oh, how she loves purses…thank the Lord I don’t carry one!), she will stealthily and swiftly empty its contents to the far corners of the room. She chooses random people in any crowd and gives them huge hugs.

Adults deal with it well. They think it’s cute, and sometimes I think she has a sixth sense about who most needs something. How else to account for all those touch points?

But kids are another matter. Kids don’t have the understanding and tolerance their parents do, because those are learned skills, acquired values. I can hardly fault them for regarding with suspicion a person who steals their food, and then the adults yell at them instead of her. She doesn’t exactly fit in anywhere. She’s too old to play with the toddlers, and she can’t keep up with the big kids–those her own age. They tolerate her presence, they take her in stride…but she’s clearly not a part of the group.

It is sad, and unfair, that those I most want her to be able to connect with are the ones least equipped. Yes, it’s great that she creates warm fuzzies with people who can influence her larger future, but that’s a global thing. As far as she’s concerned, her peers are more important.

Understand, I’m not going for a “woe is me” theme. Yesterday I got to meet several self-advocates and teens with Down syndrome, as well as children of all age ranges. I’m still on a high, seeing the community I knew had to be in my area, even if we couldn’t find them for the first several years. But I have to keep it real, too!

Later this week, when I’ve fully processed everything, I might share more about our DS group kickoff event.