I suppose that no matter how hard you try to give each child unique and personal experiences, it’s inevitable that they will eventually perceive the differences, and get resentful.
From day one, we’ve tried to make sure that all the noise associated with Down syndrome didn’t overshadow Alex’s position in the family. Christian takes him on outings; I play with him or cook with him or take him to the woods, just the two of us. And he has such a strong personality that he doesn’t allow himself to be neglected. “Mommy, I haven’t done anything fun with you in sixty twenty weeks!” he declares tragically at least five times a day. In fact, he gets a whole lot more play time than Julianna does, because she’s at the point where she loves to toddle all over the house and entertain herself for hours. (Though I often find later that she’s unrolled multiple rolls of toilet paper…sigh…)
Still, the fact remains that she gets five hours of one-on-one therapy every week, and she doesn’t have to do as much as he does. We expect him to be dry overnight, but we don’t expect the same of his siblings. We expect him to pick up toys and help clean the house, but not his siblings. He understands that the baby is different, but Julianna’s not a baby. Why does she get off the hook?
We remind him that big boys have more responsibilities, but they also get more privileges. We remind him that kids with Down syndrome take longer to learn things than he did. We remind him that Julianna is still really little. But he can sense, instinctively, that she’s capable of more than she’s doing. And this is good, actually, because it keeps us honest.
With three children under the age of five—and one of them at a weird, nonspecific developmental level—we have all that we can handle. Trying to keep up with all three of them, and keep the house clean…well, it’s just easier not to fight some battles. For instance: Julianna, put those blocks back in the box. But Julianna’s several steps ahead of us. She knows that if she stares blankly at us for a while, we’ll figure she doesn’t get it, and we won’t make her do whatever it is.
At least, I think this is what’s happening. It’s hard to tell what’s going on inside that cute little head. She understands a lot when she wants to, but it’s not perfect. After all, she’s 2 ¾ now, and only a few days ago did I hear her deliberately imitate sounds (“Julianna, say mama,” Christian said, and she said, “Mamama!” “Say dada,” he went on, and she said happily, “Dtha dtha dtha dtha!” But she hasn’t done it since.) She’s not like Alex, who you can threaten with loss of privileges if he doesn’t do what you tell him. You have to stand there and watch her carry out your instructions, and with three kids, who has time for that?
And yet…it has to be done. So it’s good that Alex is pointing out to us the inequity in treatment, and forcing us to address it. Saturday was Reclaim The House Day, and I sat there with her and made her clean up the four thousand pieces of Sego that she had dumped all over Alex’s floor. I did some of it, of course, because I simply could not sit there long enough for her to do it all herself, one piece at a time. But she did most of it. Then I gave her some music, and a few minutes later I made her pick up her books off the floor. The next day, we had playmates over, and they all cleaned up in the basement, including Julianna. I had to sit with her while she put every block in the box individually, and I had to keep redirecting her, because halfway through she wanted to take them all out again.
I have to remind myself that children have to be taught to follow instructions, and this is what it takes. So I’m trying to find one or two things each day that I can be firm about, and make her carry out the instructions. But knowing how long it takes her to go through developmental stages, and thinking about the energy it’s going to require of me, to teach her this…I get tired just thinking about it.
Kathleen M. Basi 