Twelve Light Years Closer

 

Grace Walker Goad's North Star. Path 2008*

Sorting. Reveling. Contemplating. My daughter's graduation from the eighth grade. Forgive and indulge me one more post, Dear Readers. I cannot get over how Good it feels. It feels like an accomplishment. Each entry into each level of schooling for a child with a severe disAbility is typically met with Fear, Anxiety, Great Anticipation. Another set of Challenges, Hurdles with which we are faced.

We made it. We faced it. We lept over the Hurdle. My daughter strode alone -- first with the gentle, yet firm nudge of a typically developing peer -- across the gymnasium floor yesterday to receive her certificate.  She clutched it and then as the first in the succession of eighth grade teachers held out their hand to shake hers, confused and conditioned, she tried to hand the certificate back. Her assistant explained later that they had conditioned her by frequently stating "give it back, Grace," when she frequently grabbed, childlike, something that did not belong to her.

Repeatedly, I've thumbed to that image in my digital camera of that tall model-like teen, nearly 15, fast clipping across the high-waxed floor. Who is she? She's a reflection of the earnest, hard work she's put into 12 years of schooling that began with early intervention as a toddler. She's a reflection of the Village that nurtured her inside and outside of school. She's a glimpse at the future to come. A young, emerging woman entering high school who will someday merge into a future of Great Dreams and of Big Unknowns. And there. Is. Where. My. FEAR. Can rush in.

But. I won't let it gush over the threshold. Instead I slam and triple bolt that door because peering into the Abyss of the Unknown leads nowhere except to the Doctor for Xanax. Instead, as I have done these 12 years, I cope by paving a path to that door of future adulthood with elbow grease, networking, research and planning. And, keeping my eye on Grace's North Star.

Every now and then it becomes easy to forget to look up and hold in my mind's eye and to clutch in my heart that Vision and Dream of All She Can Become. The day to day can cause me to stumble. The realities that remind me of the rough road beneath us. Yesterday she reached for that certificate, but soaked the bedsheets before she arose that morning. Deep breath. And Believing: All Will Be Overcome. This is Our Life. One. Step. At. A.Time. Believe. And Know. I Do.

IBOK.

*This is Grace's North Star from her second PATH (Planning Tomorrow's With Hope.) I'll write about PATHs someday. They are a one to two-year plan with members of her team (not just school) to project into the future and plan backwards realistically actualize one's goals and dreams.

Comments

[Bopha]

Great points! In my exinrpeece as a pediatrician, speech delay in the under-three crowd can be caused by a plethora of things. There is even a subset of extremely high functioning normal kids who wait to speak until they have almost an adult level of vocabulary and syntax and then wake up one day and say, Mommy, may I please have oatmeal for breakfast today? I'm not kidding, I've seen it. But they were slapped with an ASD diagnosis before that.The only really reliable cues to a true severe autism diagnosis that I have seen are 1) what I call a starfish baby whose limbs actually stiffen when held instead of cuddling up; and 2) avoidance of eye contact in a seeing child. These children require special EEG testing to make sure they are not blind. They will often follow objects, however. I've seen kids like this who will lie on their backs in their cribs watching their mobiles for hours and hours, but will not make any eye contact whatsoever.Your point about ADHD is also well taken. That's where home visits are very instructive. Are the parents couch potatoes and they happen to have an athletic and bright kid who simply needs a lot of physical activity and/or intellectual stimulation?Then there's the subset of ADD kids who are actually bipolar. In my practice I caught several of them. The tipoff is when these kids are treated with stimulants, they become weepy and depressed. You treat them with either an anticonvulsant or Lithium and they feel much better and function better at home and in school.It's unfortunate that the art of medicine is really no longer taught. It's distressing to see the decline in quality of the pool of physicians, as the generations of docs who knew and taught the art are retiring or, like myself, leaving for other reasons.