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.


6 thoughts on “Julianna, Unlimited

  1. Ciska

    Thanks for this post! I follow several blogs of families with a child (or children) with DS and it strikes me that they always portray their children as wonderful and amazing, but never speak about problems or behavioural issues. As if they don’t want to recognize that, as with all children, there are tougher parts in raising a child with DS. I can understand that they want to focus on the positives, but it does give the impression that they want to ‘cover up’ the less wonderful parts. It seems they want to make DS appear as positive and ‘normal’ as possible. But it’s much more ‘normal’ and positive to read your realistic posts. It shows a child with DS has flaws too, just like everyone else!

  2. I agree with Ciska.
    I also had an unfortunate experience recently where a mom of a child with DS chastised me about the behavior of my autistic child (she screeched with delight) while allowing her child to rip a smart phone out of an adult’s hand they didn’t know and fling it across the room. She told that person, “Oh, he has Down Syndrome, he can’t help it.” Didn’t remove her child or retrieve the phone or anything. (He did other things that were destructive and pulled a child’s hair and would not let go–this was in a doctor’s office waiting room–and the mother did not understand why other parents were upset). I was mortified for her. I’m just the type of parent who accepts things are going to happen but I’m not going to allow my child to be destructive, disability or not. Your approach was so much better in giving her some freedom, but stepping in when necessary.

    It’s such a fine line sometimes, I realize there are sensory things my child can’t control and she also has some difficulty with limits (although not as much as I would have thought) but at the same time, I don’t want to do what that parent I encountered and many I know in the autism world do and make it an excuse either. Well, my child should never expected to behave in any situation because she has autism, is just not acceptable to me.

    And thank you for being realistic. Your stories about Julianna and Michael and this one are so much more relatable than if it was all sunshine and roses all the time. I was beginning to wonder if I was the only parent out there with a child with some issues sometimes :).

    • Not even remotely, Kristen. We like to stay positive because we don’t want to complain about our children, but I could think of a list of twenty things each about Julianna and Nicholas both that make me want to retire to a mountaintop…daily!

      I’m appalled at the experience you relate…but at the same time, while I want to rip that mother a new one, I’m trying to remind myself of another thing I realized this weekend about DS: namely, the variety. Just b/c my daughter can understand doesn’t mean everyone’s child can. Still, as parents we have to bear some responsibility for making sure our kids don’t cross the line.

  3. Parenting is always tough. No kid should ever be given a pass for violating boundaries. No matter the physical or mental challenges they face, kids are capable of much more than some parents are willing to demand. You’re the good, demanding Mom with lots of common sense. That’s why God sent you Julianna – so she’ll have the right foundation for getting along in life.

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