Tuesday, August 10, 2010

Back to School

Perhaps every mom wonders where the time has gone as she watches her children grow, develop, and reach and pass milestones. Many parents of kids born with SLOS were told that their children likely would not survive infancy. So for these parents, each milestone is sweeter. While Jukie’s body is uncharacteristically strong for a child with SLO, his delays are “global,” so we watch him closely. We notice, savor and celebrate each new development.

Tomorrow Jukie begins 4th grade! Maybe because 4th grade brought big changes for our daughter three years ago, I feel as though I’ve been busily preparing for this momentous transition all summer long. Last week, I took him for a back-to-school haircut. This morning, I laid out his first-day-of-school outfit (including a tee shirt that reads “heroic”). His backpack, fully stocked, sits in the entryway awaiting his chubby little arm. My little Jukester will happily run to his familiar school bus driver tomorrow morning. Jukie loves adventure. And for him, school is full of adventures. I can always tell he had a great day when he arrives home covered in dirt and paint, and full of smiles.

But there is another side to our kids’ growing up. It is bittersweet. Just as the highs feel higher with our Jukie, the worries feel more significant. To me, Jukie seems at once “big” and also still baby-like in his perfect, sweet simplicity. Mothers’ instincts are to protect their cubs; I could not feel more protective of my special baby bear. Needing round-the-clock supervision, Jukie is 100% vulnerable. He will (and has) run out in traffic. He will eat anything which appeals to him, food or otherwise. Given the opportunity (like his mom’s turned head), Jukie will wander off. Once, when I told him that we could not go to the park, he climbed our fence and ran a mile away to the park he wanted to visit. He has more determination than common sense.

My protective feelings for Jukie also can make accepting his development a bit complicated. His dad and I looked at each other today and said, “4th GRADE?!” Is Jukie really entering 4th grade? We feel partly incredulous, as Jukie seems to transcend “grade.” We recall his sister Geneva’s 4th grade experience: the curriculum (studying the State of California), the change in emphasis from learning to read to reading to learn, and the longer school day. Of course, none of the typical 4th grade curriculum has anything to do with Jukie’s school experience. Jukie walks his own path and attends to a curriculum written expressly for him. (And there are benefits, as well: we won’t have to help create a
3D model of a California Mission this year!)

On this last day of Jukie’s summer, I reflect on how far he has come in nine years. As his mommy, I see even his most subtle areas of growth. This summer, he learned how to pump his feet while swinging. His receptive language continues to develop. (I’ve learned to watch what I say unless I want Jukie to act on something he may have heard me mention.) And I’ve watched a new level of maturity develop. Jukie seems older, calmer. Even his hand feels bigger in mine.

Tomorrow as I wave to Jukie from the curb, I know that I will feel that first day of school pang of excitement mixed with nervousness for my big Jukie-boy. I am so proud. Jukie is my hero.


  1. 4th grade. I was thinking about Jukie and how far he's come today. During a transition, I walked with him past a bin full of beans and rice (on a table, lidless) and my initial reaction was to panic and hope he didn't see it. Then I remembered that he doesn't dump items anymore. Water glasses are safe. Beans and rice undisturbed.

    At snack, he sat down with his book and confidently asked for Pirate Booty. I've been away from him for six months. I've missed his love of Pirate Booty. I've missed his Jukie kisses. I've missed Jukie.

    Now we're back in school. The activity level is high (as it is in any classroom on the first day of school). The chaos is chaotic (again, first day of school). And Jukie is Jukie. Taller. Calmer. Focused. Wonderful.

    I'm so glad we're back together again.

  2. Sylvia, Jukie is a lucky, LUCKY boy to have you as his teacher. Hardly a day passes, without my gratitude for all of your love, energy, insight and hard work with Jukie.

    Recently, I was asked by NIH researchers if I could tell which of the last two years Jukie was on the placebo versus the study drug. I kept telling them that Jukie began the study the same month that he started with *Sylvia* -- and Sylvia turned his entire life around. Within months, you had him focused, using PECS and loving school. What a transformation!

    I'm so glad we're all back together again too.