When No Labels Fit

Alex's parents struggled to find the right diagnosis and the right classroom for their "late bloomer." After years of therapists, neurologists and anguish, they found a special-ed school that made all the difference.

Diagnosing Learning Disability ADDitude Magazine

Were my genes lousy? Had I not eaten well enough while pregnant? Was it my fault?

Nancy Bilyeau, mother to Alexander and Nora

It seemed like just another nugget of bad news in the paper. "Rocket fuel has been found in surprisingly high levels in mothers' breast milk," I read, sitting at my messy desk, sipping my second towering coffee of the morning. The next sentence jumped off the page: "These levels of rocket fuel could even cause developmental delays in children."

I set the paper down next to my computer, the coffee turning sour in the back of my throat. Is that it? I asked myself. Did I eat food laced with rocket fuel when I was pregnant? Is that the reason why?

A late bloomer?

At his private elementary school, just six blocks from my office in New York City, my son, Alex, was at that moment heading into morning reading group. Six-and-a-half years old, he can read about 20 words and sound others out with his patented determination. His math skills are strong, too: He can add and is beginning to subtract. He loves science and computers and art. He lives for soccer.

And yet all is not as it should be. My son has "issues." Developmental issues. He knew but five words at age two; he still doesn't speak with proficiency. He has trouble relating to children his own age without prompting. At the playground on weekends, other little boys will scramble up to Alex, who is usually digging a tunnel in the sandbox, and eagerly ask, "Do you want to play?" Alex smiles, but he doesn't reply or stop what he's doing. A minute later, Alex will peer around and ask me, "Where's the boy?" My heart breaking a bit, I'll say, "He's gone, Alex." In the Darwinian stew of the playground, children have three seconds to respond to one another's social cues. Alex misses by a mile.

Tough questions

When people ask me where my son goes to school, I tell them Alex attends a small special-ed school. Their next question is: "What's wrong?" And then comes the confusing part: I don't even know. Various "experts" - pediatric neurologists and psychologists, speech therapists, occupational therapists, and play therapists - have examined my son. And nearly every session with a doctor has led to a different diagnosis: He has attention deficit disorder (ADD ADHD); he has Asperger's; he has pervasive developmental disorder, not otherwise specified (PDD-NOS). He is an "out-of-sync" child, with sensory issues. He has low tone. He has a budding anxiety disorder. Some of these diagnoses cancel one another out.

One neurologist, who commanded $2,500 for an evaluation, admitted that PDD-NOS, Alex's usual diagnosis, is a "garbage diagnosis." "It means no one is certain what's wrong with the child," she said.

Alex's warm and pragmatic pediatrician, Dr. Michael Traister, avoids labels in favor of stressing the positives: Alex is making steady progress. He talks more. He makes eye contact. Dr. Traister is one of the few cheerleaders in our lives.

This article comes from the August/September 2006 issue of ADDitude.

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