Our son Simone was three when people first pointed out that something was different about him. We were encouraged to investigate, but we held back. Our family doctor kept telling us to let him grow at his own pace, so that's what we did.
When he started school, the difficulties became harder to ignore. We began searching everywhere: genetics, gastroenterology for an incontinence issue. Psychologists and child psychiatrists assessed him for speech and motor development problems. Simone was "unharmonious," they said—a diagnosis that could mean anything or nothing.
The process did eliminate one physiological cause after another. I was relieved his condition wasn't genetic. But as the diagnoses kept shifting, I collapsed into anger and guilt: what had I done to my son to make him this way?
When Simone turned seven, we saw a specialist in pervasive developmental disorders. When he told us our son had no behavioral disorder, I felt relief and profound depression at the same time. Once again, we didn't know what we were fighting. The doctors kept saying this was good news. We had spent years battling the unknown, feeling helpless, trapped by something we couldn't name. We tried everything to help him. Nothing worked.
Unclassifiable
Now I swing between wanting a diagnosis and dreading one, afraid Simone will be labeled. I don't want my son to carry a label, yet part of me thinks it would be reassuring—painful, but reassuring. In any case, Simone has always been unclassifiable. In a way, he's in between: he develops in some areas, not in others. He can read and write, for instance, but he's in a special education class, and anything abstract doesn't stick with him. We've discovered a play-based method that seems to be helping.
Finally, I feel like I know where to look. But like my husband, I refuse to use the word handicap. It would feel like giving up. Simone himself wouldn't want us to use that word. As for going back to a doctor… I can barely manage to take him to the dentist.
Virginia Lespingal, 2013