“This is not apraxia. It is still a severe motor planning issue, but not apraxia. She has worked diligently and made tremendous progress in the last two years. If it was apraxia, she wouldn’t be able to talk as well as she does now.”
Lovey and I both heard her say it and it wasn’t what we were expecting. It had been two and a half years since we last had been able to spend time with Sara Rosenfeld Johnson. When you see someone every day, sometimes the subtle changes are hard to recognize. On the drive up to the appointment the Quail had napped in the backseat while we debated how much change had actually occurred since our last visit. Lovey and I had different ideas of how much had changed. Certainly, there were more words the Quail could approximate now. Absolutely we heard examples of two word phrases from her and at times even more when she tacked a name or angry no to what she wanted. But at 5 years old, she still didn’t have the capacity to tell us everything she felt the need to, and for her- that was an incredibly frustrating process.
“No shirt. NOOOOO!”
A version of that phrase was a common morning routine. The Quail, she knows what she wants to wear. And this summer that consisted of what she called her “Frozen” or “Camp High-Five” shirt. The thing is, there are seven days in the week and that is only two shirts. Two shirts that after a single wearing would morph from white to sand and red clay colored with an outline of her lunch of dinosaur noodles with red sauce, the remnants of the purple or brown marker she had used to draw with, the dripped pattern of the purple popsicle, frosted cupcake or juice she had enjoyed during an afternoon snack. In other words, she was limited to a single wearing a week because her parents couldn’t find a few free weeknight hours to spray, rub, soak and wash her beloved shirts back to their original (or something closely approximating) shade of white. That meant 5 days a week of early morning, tired, hungry and grumpy negotiations about what she was to wear that day. Fortunately Zuzu eventually gave up her Camp High-Five shirt to the cause and another family friend had a spare and donated it as well. And yes. All three of those shirts would get worn each and every week. Her sister’s Frozen shirt- well that was off limits. But we all have our limits.
“You wore Camp High-Five on Monday Quail. It’s dirty remember? You had Dinosaurs for lunch that day and it was hot outside. It’s coated in sand and sauce. You can wear it next week.”
Leaning down, I reopen the dresser drawer that the Quail has just slammed shut in frustration. Quickly pulling my fingers back as she reaches to push it closed again I see her face twist in anger.
“Are you angry honey?”
“Ye-ah” Her face crumples as she sits criss-cross applesauce in front of the dresser. What she wears should be her choice. And for the most part it is. Zuzu runs over and pulls her own Frozen shirt from her drawer and the site of it stirs the Quail’s cooling anger again. “NO Zuzu! No! My Frozen. Mine!” Her little hand curls into her chest as she pushes herself up from the ground about to launch her small but stout self after her twiggy sister who dances just out of reach from her. Zuzu opens her mouth to tattle that the Quail is being mean even though I’m sitting there witnessing it in real time. I intervene, suggesting Zuzu dress in the bathroom and push aside the dozen shirts that continue to go unworn in the months since they were last washed. “How about this one. You like purple- it has purple stripes.”
“NO MOMMA. NO. Dah-rk puu-ple.”
Ah- dark purple- this I can do. Lifting up the tangled mass of patterned and striped yellow, red, blue, pink and white shirts I find one of two dark purple shirts that she favors at the bottom of the drawer. “This one?”
“YES!!!!” She squeals leaning in to do a little dance of happiness as her small soft hands unfurl to clasp my cheeks and she presses her nose to mine. Yes. That shirt, the dark purple one is the one she wanted to wear. The one that until recently she couldn’t articulate the difference between it and a dozen others in a clear enough speech pattern for me to get it right on the first or the forty-first try. Softly inhaling her morning breath , I smile and pull her down into my lap to help her get the shirt on before moving on to the pants. And the socks. And the shoes. And the hairclip. The things that I know matter to her but that she has to work so very hard to make understood. It’s these little basic, ordinary, everyday choices that we all make without a second thought that urge Lovey and I on to work and work and work on her speech. It’s not because we think she isn’t whole. It’s not because we think she isn’t perfect the way she is. It is not because we think if she doesn’t walk and talk and act like the mainstream she doesn’t deserve her place in it.
Not. At. All.
It’s completely the opposite. Once upon a time, a child with a label of Down syndrome (or a thousand other special needs labels) would not be considered worth medical and educational care. They were seen as less than, incomplete, a mistake, someone not worth affording the opportunities to receive basic care that the rest of us can take for granted that we have a choice to either sign-up for or not. When my older sister was 6 years old she had yet to be able to walk. My mother, she asked her doctor to refer her to physical therapy so that they could learn the exercises that would strengthen her muscles and help them remain pliable so that she wouldn’t end up unable to move by unintentional neglect. But that doctor did what was common in that time. He said no. That it would do no good so he wasn’t going to waste everyone’s time, effort and money. At that time the only way to receive specialized care was to live in a specialized setting. An institution. Ironic isn’t it? In the year that she was seven, after having been at the institution and under the specialized care and therapies that the doctor had sworn would not benefit her she took her first steps.
The Quail, she is still learning to talk. To put together the words that will tell the world who she is, what she knows, what she wants and how she feels in her own words and way. Because those things exist. Her thoughts, her preferences, her opinions they matter. She works hard each and every day to do what the rest of us are blessed to come by easily and take for granted. Our visit with Sara was a heart-warming one. One that said she has progressed and will most likely continue to progress. That the effort and love we put into helping her say the things that matter to her are worth the effort. That she is worth the effort. That just because it isn’t coming easily to her doesn’t mean that we should lower our expectations for her. It’s best to shoot for the moon as Mr. Peale says, even if we miss we’ll land among the stars.
Or in our case, the dark purple shirts and quiet mornings.