In a 1st-grade class at Braeside Elementary School in Highland Park, Nancy Lelewer copied a fellow student’s answers on reading tests because she couldn’t make sense out of anything written. She avoided writing because her mind switched words around.
“I felt that I was only a little bit retarded or stupid, and only a little bit of my brain was broken,” said Lelewer (rhymes with Delaware) in an interview during a recent visit to Chicago. “You feel there’s something not right about you.”
Lelewer, now 59, was a college junior before she realized she suffered from dyslexia, a learning disability that hampers the ability to read, write and spell, sapping the ability to cope.
Psychologists, physicians and educators also were slow in diagnosing the learning disabilities in three of her four children, including dyslexia and attention deficit disorder, a neurological syndrome that can cause a person to crave attention, to be distracted easily, to be impulsive and, often, hyperactive. They wrote off those children, suggesting the eldest would never work and recommending institutionalizing the third child, whom Lelewer calls Brian (not his real name) in her book “Something’s Not Right: One Family’s Struggle With Learning Disabilities” (VanderWyk & Burnham).
As an associate in neurology at Harvard Medical School and a former dyslexia researcher at MIT, Lelewer received hundreds of calls from parents desperate for help with their learning-disabled children. But it wasn’t until eight years ago that she finally agreed to tell her story to spotlight alternative ways to reach and teach learning-disabled kids.
“There is light at the end of the tunnel,” said Lelewer, who advises parents and teachers to seek “early diagnosis and appropriate remediation until the youngsters have the skills necessary to learn their own way.”
In the book, written with honesty and passion, she fleshes out her nightmare crusade during the 1960s and ’70s. Writing it, she said, “was a real catharsis for me because I got rid of my anger and other baggage. But I spent as much time crying as writing.”
Through hard work the author graduated from Sarah Lawrence College, married a wealthy Boston executive and had four children in five years.
As an infant, Brian shook uncontrollably. As a toddler, he was often destructive and screaming in rage. He was rushed to the hospital seven times in three weeks. Over three nights, he knocked a bookcase on top of himself, burned his stuffed animals in the oven and snuck outside in his pajamas and bare feet to make a snowman. Brian’s pediatrician told Lelewer to lock him in his bedroom at night, which she did until he smeared feces on the floor.
When Brian was 5, a psychologist warned the boy that he was trying to kill himself. Schools asked the boy to leave, claiming he was severely emotionally disturbed.
“You feel sick inside,” Lelewer said. “You are scared, terrified, desperate and ready to do whatever you can so that your kid is OK.”
During one incident when he was 6, Brian asked Lelewer 10 times in 20 minutes when he was going to a friend’s birthday party. After answering nine times, Lelewer finally said, “The party is tomorrow-Wednesday. You have to believe me and don’t ask again.”
Brian responded: “Where is Wednesday, inside or out? I’ll believe you when you show it to me.”
Realizing that Brian was missing basic concepts such as space and time, Lelewer taught him those ideas by inventing hand-held games and learning tools, such as a calendar to mark off short periods of every day.
Lelewer’s book on learning disabilities offers valuable resources and hope to others in similar situations.
Now 32, Brian’s accomplishments speak for themselves. A carpenter, he is married and the father of two children. He has an associate’s degree and private pilot’s license. His 36-year-old sister, whom Lelewer was told would never work, graduated from Cornell University and is a corporate food and beverage director for a large hotel chain.
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“Something’s Not Right: One Family’s Struggle With Learning Disabilities” is available in bookstores or by calling the publisher at 1-800-789-7916.
