Words. We use them, stumble over them, repeat them, misuse them, throw them away like remnants of a shattered plate, without ever realizing how priceless they are, how indispensable. However well or poorly we use them, whatever language we speak or write, words are the fundamental building block of human interaction. Body language, facial expressions—all these are important, but without words, they can only communicate so much.
I’m thinking a lot about words lately, because Julianna’s not using them. In fact, she has decided to toe the line and stubbornly not cooperate with anything that smacks of speech therapy. She won’t mimic sounds (though she can)…she won’t make that “Indian war whoop” sound or play with fingers upon lips (though she used to love that game)…she will not use any consonants. Zero. Zip. Her communication consists of signs and lots of long, deafening vowels and grunts.
The other day during speech therapy, she stuck her bottom up in the air, got to her feet, padded over into the next room and plopped down with her back to her therapist. You could practically see the thought bubble: “La-la-la-la, I can’t hear you!” Stubborn little cuss. Good thing she’s so cute. 🙂
I’m not as frustrated as I was when she refused to walk. The lesson I learned in the nine months between her first steps and the day she woke up and decided to walk is that she does things on her own time. I encounter people like Blair Williamson, and I know in my rational mind that this stage doesn’t last forever, even if it feels like an unguided exploration of Devil’s Ice Box—without lights. And I’m grateful for the progress that I do see. Her cognition is way ahead of her ability to express it. She doesn’t quite understand everything, but understands a lot.
However, like everything else about raising a child with Down’s, it does challenge us as parents. Alex is irritable because he’s the only one in the house who has chores, who has to help Mommy and Daddy clean up. I can tell him that bigger kids get more privileges, but they also have more responsibilities—but at some point, isn’t it just unfair that Julianna doesn’t do anything at all? That she gets this extended toddlerhood, without much responsibility?
The trick is knowing what tasks and skills she’s ready for, and how independent we can let her be. For instance: she wants to go outside all the time now—because it gives her unlimited room to walk. She loves to walk. And walk. And walk. I can let her walk up and down the sidewalk to her heart’s content, but does she understand me when I tell her to stay out of the street? I don’t want to hover; I want to give her the chance to find her own space…but there’s that pesky little “safety” issue. The baby in tow further complicates things. With a typically-developing child, this awkward stage would last a few weeks, maybe a couple of months, and there would be forward progress all the time. Who knows how long it will last for Julianna?
We spent so much energy for so long focused on getting her on her feet and mobile that everything else got shoved to second place. Now, as Nicholas hurtles along the developmental paths, with his mama’s and his nuh nuhs and guh’s and razzes and tongue clicks, a wider variety of sounds than Julianna has ever made in her life…now, the speech therapist and I are both wondering if the thing that’s going to get Julianna to speak is Nicholas starting to talk.
If Julianna knows the answer, she’s not talking.
Kathleen M. Basi 