Bright beginnings can mask a learning disability

By Laura Pappano, 3/17/2002

Newton parent Jessie Solodar marveled when, at 2 1/2, son Dan learned the names of all the instruments in an orchestra and often pretended to be a conductor. ''We thought we had a maestro on our hands,'' she said. Even today, when you meet Dan Rozenson, a 12-year-old Harry Potter look-alike, you think ''smart kid.''

And he is. But that's only half the picture.

Dan has a verbal IQ of 130 - and Nonverbal Learning Disorder, a diagnosis education specialists say is becoming increasingly common. Specialists disagree about whether it is related to autism or is a distinct disorder, but the diagnosis is growing to the point where one special education director described it as ''the flavor of the month.''

Parents, however, describe wrenching experiences with schools and teachers who doubt something is wrong because children appear intelligent.

''It's a relatively new category,'' said Boston lawyer Robert Crabtree, who helped write the state's special education law. ''Whenever school systems run into a category that mostly affects behaviors, social skills, and organizational skills, they tend to react by saying, `That's not our problem.'''

Although schools have become practiced in serving children with learning disorders, including dyslexia and Attention Deficit Disorder, NLD presents a tougher problem. Children with NLD are far from being ''nonverbal'' and are, in fact, extraordinarily verbal, memorizing facts and speaking with an impressive vocabulary. Their troubles come with visual and spatial abilities, gross motor skills, balance, organization, interpreting social interactions, and anything that requires making sense, whether of writing or someone's tone of voice.

So although students with NLD are often viewed as gifted early on, by late elementary and middle school they're confounded by problems, said Ann Helmus, neuropsychologist and codirector of the Children's Evaluation Center in Watertown.

''For these guys, everything is a struggle,'' she said. ''Recess is a struggle. They can read but they can't comprehend. They can do math computations, but they can't solve problems. They can spell, but they can't produce written compositions.''

One mother described taking her 11-year-old son with NLD to see ''Harry Potter.'' He loved the movie's costumes and scenery, but couldn't follow the story. Instead, he focused on the fact that in one scene, the camera is reflected in Harry's glasses.

Dan, and students like him, may appear to teachers like intelligent students who are lazy or acting out. ''Dan is a very bright boy who has a lot of potential,'' his teacher wrote in his third-grade report card. ''He is very capable of doing the assignments, but lacks the initiative or desire to complete the work.''

In reality, though, students like Dan are working hard but not making progress, which can sink their self-esteem and trigger depression, said Sue Thompson, an educational therapist in Vallejo, Calif., and an authority on NLD. ''I call it, `The illusion of competence,''' said Thompson. ''These individuals look very competent, so when they mess up it looks like purposeful behavior - and people don't suspect neurological incompetencies.''

That's the greatest frustration, say parents and children with NLD. Dan said he has been made fun of for not completing homework - even as he has pointed out to a teacher that Moses Fleetwood Walker, not Jackie Robinson, was the first black to play baseball in the major leagues.

''Having the diagnosis, I can have a partial explanation for why my homework sometimes doesn't get done,'' said Dan. ''It sort of states that I'm not lazy.''

It's comforting to have a diagnosis, but parents say it's still challenging to get proper help. Natick parent Barb Wilder-Smith, who has a 12-year-old son with NLD, started an NLD support group two years ago. Since then, she said, the electronic mailing list has grown to 172, and 50 people attended the last group meeting.

''When I started this two years ago, I longed to talk with other families of children with this diagnosis,'' she said. ''I had not envisioned the interest and need.''

Although there always have been people with NLD - many cite the stereotypical class ''geeks'' who never fit in socially as possibly having the disorder - the very educational reforms heralded as improvements for most children such as cooperative learning, critical thinking, and problem-solving instead of rote memorization and computation are highlighting the weaknesses of students with NLD.

''Education is a preparation for the future and if we are failing groups of students by not preparing them to be independent individuals contributing to society, then we are not doing our jobs as educators,'' Thompson said.

It means schools have to go beyond looking at the student's normal or even high IQ, said Janice Ware, psychologist and associate director of the Developmental Medicine Center at Children's Hospital in Boston. ''The real issue is recognizing that this is an impediment that does require special education intervention,'' she said.

Judith Hoyer, director of student services for the Medway Public Schools, said schools have to figure out which specialist can help a child most. ''We are asked to prioritize and not to work with an array, but focus on the most important things we can do in school to help that child access the curriculum,'' she said.

But Helmus said children with NLD often need a range of help. Plus, she said, unlike other learning disabilities in which children get classroom support to do the work on the one hand and help to correct the problem on the other, there is no fixing NLD - only teaching students ways to cope.

At the private Corwin-Russell School in Subdury, which works with learning disabled children of above-average intelligence, teacher Judy Seligman said the school makes instruction in reading and responding to social cues part of the curriculum.

Solodar said it has taken time - and some painful experiences such as the D-minus that Dan earned in a sixth-grade project because he couldn't interpret the teacher's instructions - but Dan is getting help and his grades and self-confidence are rebounding.

But finding the right help is not easy. Mairead Reddin of Medway feels years of her 17-year-old daughter Fiona's life were wasted for lack of the proper diagnosis and help. ''The single most important thing that would have helped Fiona would have been first of all for the school system to be accepting and willing to work with her,'' she said.

And although Fiona, who comes across as intelligent and articulate over the phone, may graduate from high school this spring, Reddin feels uncertain about the future. ''I have well-meaning friends and relatives who say, `Fiona will do fine, she's a great kid,''' said Reddin. ''Well, I hope they're right because I have severe doubts.''

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This story ran on page C15 of the Boston Globe on 3/17/2002.
Copyright 2002 Globe Newspaper Company.