“He’s definitely got his own channel!” Has he always been like this?
Over the years, this has been an all-too-familiar question for our family regarding our now 6-year-old, Edward. Sometimes we hear this question for exceptionally wonderful or riotously funny reasons, and sometimes for confusing and somewhat concerning reasons.
If you are the parent of a child who hovers a few inches (or feet) away from the “box of neurotypicality,” or for whom there is no box in the visible horizon, you might know how I feel.
The first time I heard this question, my Edward was 15 months old. He talked up a storm, knew all his numbers and letters, as well as the names of all typical and obscure musical instruments, and was an incredibly social child, too. He never experienced any regression.
Still, he could not stand unassisted and certainly was nowhere close to walking. He had macrocephaly, chronic ear infections, wretched allergies, sleep apnea, was underweight and fell so much his forehead was constantly peppered with bruises.
I won’t bore you by chronicling his development year by year, but I will share that academically he has always rushed ahead at a break-neck, almost frightening speed, while executive functioning, fine-motor and gross-motor skills have lagged.
I had such high hopes for Kindergarten. After all, my child read on a 4th grade level the first day of kindergarten! Certainly he would sail through this childhood milestone even if he couldn’t unpack his backpack, stand in a line or button his shirt. I daydreamed of reading proudly in the Kindergarten class while my darling sat at my feet, looking up in adoration at his mommy in her neatly pressed cropped pants.
Instead, my sweetheart spent reading period either correcting the pronunciation of the teacher’s (or my) reading or busily prying up carpet glue.
I will never forget the day a well-meaning substitute teacher looked me in the eyes and delivered the blow: “You realize he’s twice-exceptional…and probably falls somewhere on the Spectrum.”
Boy, that hurt.
I always knew he was gifted. I had just hoped the giftedness was the reason other behaviors and abilities weren’t falling into place. I clung to that hope for a long, long time and while I believe that is still true to a certain extent, I have also come to terms with the truth that he needs quite a bit of intervention in several areas.
I am well aware that considerable controversy surrounds the concept of the Spectrum, and I do not pretend to be educated enough to even comment regarding which diagnoses should or should not be placed on that spectrum.
Intuitively, I feel he flits somewhere around the Spectrum. I’m just not sure where, and from where I sit tonight, I’m not sure it truly matters. And while one day it seems he is at one end, the next day he’s in a different spot. I guess that is why they call it a “Spectrum.”
At this point, I’ve got about six different terms that have been written down on several different evaluations completed by everyone from neuro, clinical and developmental psychologists and occupational therapists to babysitters, grandparents, neighbors, speech therapists and well-meaning school principals.
And they are all quite, quite different.
Some of them include the word “possible.”
I just love that.
Yet what I am trying to do at this point is choose the interventions that best address his immediate needs, and not become paralyzed by this possible label or that potential definition. God is helping me to see beyond the confines of this vast array of terms that have been used to describe my child. Because they certainly don’t define him, or any other child.
So now when I hear the age-old question, “Has he always been this way?” I have to smile slightly and wonder inwardly: “So clever, so dramatic, so hypoglycemic, so hyperactive, so funny, so curly-headed, so inquisitive, so chicken finger-loving, so outspoken about foodborne illness, so…wonderful?”
And then I smile and answer, “Yes, he has.” Because whatever he or she means, it’s probably true.
We fashioned “the box” into a pirate ship and are sailing, sailing, sailing.
They’ve each got their own channel, too.
Don’t we all?