This is a true story of how I went about supporting self esteem for my son with the truth.
We were on our way to the developmental optometrist’s office when it happened.
My son Joe’s current diagnosis basically translates to “chatty, skinny boy with remarkable expressive language skills, poor visual tracking, and low muscle tone.”
You might add “occasionally lacks self confidence.” That’s really all it is.
This remarkable boy has been juggling appointments and evaluations since before he was three.
Since the day the nursery school director called my husband and me in to discuss “what’s going on with Joe,” he’s been tested by a neuropsychologist, a physical therapist, auditory experts, and vision specialists.
He’s benefited from Brain Gym and therapy to integrate primitive reflexes. He’s “played” with four different OTs.
I’ve dragged him to horseback riding, movement and dance classes he didn’t want to attend, and he still sees an osteopath.
He is precociously savvy about the dangers of artificial colorings and flavors in his food.
He avoids sports because he can’t kick or hit a ball.
Joe knows SOMETHING’S up.
But he has never, in four years of relentless intervention, asked WHAT’S up. Then on this rainy June afternoon, soon after his seventh birthday…”Why do I go to Dr. Wintrob?”
For me, this question felt more charged than, “How are babies made?” or “What is God?” “Ahhh…well…you see Dr. Wintrob because you need practice using both of your eyes together.”
My heart was beating very hard. I finally said, “Let’s ask the doctor.”
Privately I questioned our optometrist, Dr. Gerald Wintrob, “What will you tell Joe if he asks why he comes here?”
“I’ll tell the truth,” Jerry said, with the maddening calm of someone whose been at this for a long while.
“I’ll tell him that he’s got something going on with his eyes that makes it hard for him to keep his place when he’s reading.”
I frowned. It sounded too negative. But the fact is, Joe was ready. His self esteem is not that fragile. He’s at the age where knowing is a vital part of his healing.
Knowing the truth, I now see, can be a relief. Parents of kids with special needs shouldn’t let their own sense of shame or failure alter the way they present simple facts to their children.
Then, I still hoped that Joe would forget about it. And he did forget… until he finished his work and we were saying goodbye. Then, very matter-of-factly, Joe said, “Why do I come here?”
Jerry rose, approached Joe, and looked him in the eye. For a boy who sometimes struggles to maintain eye contact, Joe had no problem in that moment.
I, in the meantime, was flying around the room in a nervous, happy agony. I listened in wonderment. Jerry said, “You have a situation going on with your eyes, Joe, that will make it difficult for you to read…”
Joe collapsed in defeat, sighed in disgust, sat up and argued back. “No I don’t. I can read. I CAN read!” “Well, you can read now because the books you are reading have very big letters,” Wintrob said. “I’m talking about when you are older and how it might be hard to keep your place.”
We talked about how everyone has weaknesses to work on and needs to practice in order to get good at anything. Then Joe crawled into my lap and asked me the most interesting question, “When did you know?”
A cloud of memories surfaced. The test our pediatrician gave him for muscular dystrophy. The conferences and reports. The crying at night. The whispered explanations to camp counselors and babysitters. The talks with relatives. I KNEW a long time ago.
I’d worried myself to bits. Since then, we’ve worked with wonderful professionals and have come to know a lot more. “Joe is a gift, Amy. You could have had a cookie cutter kid,” Joye Newman of Kids Moving Company once told me, “but then look at what you would have missed.”
So I just said, “Honey, I knew when I got you tested. Remember? You, Gordon, Daddy and I all got tested. You and I are the ones who need extra practice.”
That was that. Joe skipped out of the office. The sun had come out. The flowers were gorgeous. We noticed new things. He knew. He could deal with what he knew. And I could too.
Amy Cunningham is a freelance writer. Formerly of Washington D.C., she now lives in Brooklyn with her husband and two sons.