Smart, Honest, Trusting, Loving - What's the Problem?
by Bethany L. Stancliff
Anne was in the middle of completing her Master's degree when she began to suspect there was a problem developing her 5-year old son, Justin*. An extremely bright child, Justin had an advanced vocabulary, spoke like a well-educated adult, and read at the fifth-grade level. One day, Justin was playing with Anne's water color paints, which he had never used before. Anne asked if she could show him how to use the paints, and he exploded: "No, I don't need you to show me how to use these! What do you think I am - stupid or something?"
She was taken aback. "Both my husband and I are very easy-going people. We were always saying things like, 'If you do your best, that's good enough.' I couldn't imagine what Justin must have heard from me." They began to notice that their son was extremely hard on himself, and he was getting into trouble at school: leaving the classroom without permission, refusing to participate in activities, and getting into arguments with adults.
She decided that Justin needed to be tested, thinking that he might need to be in a talented-and-gifted class. But the tests revealed something far different: a learning disability.
Justin was given a diagnosis of Nonverbal Learning Disability (NVLD), one that very little is known about or understood. Anne, who obtained her Master's degree in May, 1997, has taken it on herself to learn about the disorder and to educate the public about its symptoms, treatment possibilities, and potential for these children to live full lives.
"Nonverbal Learning Disability is very backwards from other learning disabilities," she explains. "These children talk early, read at the age of 3, and are very bright. It's the world of nonverbal that mystifies them. Whatever you say, that's exactly what they think you mean."
She offers this example: Justin's class decided to plant flowers as a Mother's Day project. When a parent aide asked Justin if he wanted to plant a flower, he answered truthfully: "No." The parent was shocked. Justin's grandmother, standing nearby, asked him why he had said no. He replied, "She asked me if I wanted to, and I don't." "Would you be willing to?" asked his grandmother. "Of course," said Justin, and he planted his flower.
"They cannot interpret tones or facial expressions, they often have a blank look, and humor is missing for them," says Anne. "Sixty-five to ninety percent of all communication is non-verbal, and these kids miss out on all of those cues. So it looks like the child is belligerent, disruptive, defiant, or weird. And because they don't have successful social interactions, they can eventually become very withdrawn."
Another component of this disorder, one that Anne calls "the most upsetting," is that children with NVLD are "vulnerable," she says. "They are very trusting. It would never occur to these children to lie. They don't anticipate consequences, which you really have to in order to lie. This makes them targets of all sorts of people."
The way in which this disorder manifests itself is deceptive. A parent never suspects that a child who demonstrates so much intelligence at an early age actually has a learning disability, and because it does not appear until the child begins school and seems to be a behavioral problem rather than an academic one, the child receives punishment rather than treatment. This mistreatment persists until the third through sixth grades, when even their verbal performance starts to fall off as pencil-and-paper skills are emphasized. Typically, these children also have a left-side weakness that causes them to fall out of their chairs a lot. Teachers will often accuse them of not staying in their seats, and so they wind up with labels such as "emotionally disturbed," "attention deficient," "uncooperative," and many other negative labels involving behavior. Often these children have no idea why they were reprimanded. If they get negative responses often enough, they internalize the negativity and become extremely unhappy. The emotional trauma can be deep, painful, and sometimes permanent. "My son has walked around for a month - it's starting to lift, thank God - saying 'I suck, I suck, I suck, I suck, I suck, I suck,' and hitting himself in the head, says Anne. "He's a beautiful little boy. To see him do that is so painful."
She and her husband have had to contend with many more heart-wrenching scenes as well. When Justin was tested, they did not receive a diagnosis immediately. Justin mistakenly thought that the testing had cured him. "We didn't realize how severe it was and how much he was holding in," Anne remembers. He told her he was unhappy, and she didn't know what to say.
A few days later, Anne received a call from her son's school. A staff member told her that Justin had run away. Terrified, she drove to the school immediately to find that he was actually standing outside of the classroom, refusing to go in. "I asked, 'Justin, what happened?', and he looked up at me and said, 'Mom, why don't you just kill me?' He meant that."
When the diagnosis came, Anne went to a bookstore and got the one book she could find on NVLD, written by a psychiatrist name Byron Rourke, the first to give a name to this disability. What she read devastated her. "'Prognosis grim, Outcome bleak,'" parrots Anne bitterly. "'Social isolation,'" She returned the book to the store, refusing to accept what she'd read..Then she found a book by Sue Thompson, I Shouldn't Have to Tell You. Through this book, Anne learned that Rourke's work was with people with NVLD who had never been diagnosed, never received intervention, were older than the age of 7, and whose families were structured in such a way that they did not get any help at all, even accidentally. In contrast, Thompson had worked with people of all ages and had very successful outcomes. She listed ideas for treatment, parenting, accommodations and early intervention.
Anne and her husband began a five-pronged attack on Justin's NVLD. They first took him to an occupational therapist to be tested for sensory integration skills. They found that he was hypersensitive auditorily. Next they paid out of pocket for Justin to see a psychologist and a learning specialist. They found that he scored in the 98th percentile verbally, but in the fifth to 45th percentile on nonverbal skills-and only on the tests that they could get him to take. Third, they hired a behavioral tutor to help Justin with frustration tolerance and self-esteem because they found that his school did not know how to approach teaching him. Fourth, Justin was tested by an occupational therapist/vision expert who gave him vision therapy activities. And finally, they hired a specialist whose sole job is to find a school appropriate for children with Justin's types of problems. At this writing, Anne is set to attend an individualized education plan (IEP) meeting at a proposed new school.
Throughout this learning process, Anne has discovered what will and will not help Justin overcome NVLD. According to her, it is best to know first what does not work. This includes repetitive behavior modification, rewards and tokens, written exercises, workbooks, drills, timed tests, written tests, and punitive actions. Successful approaches include crafts, grading the child on work done rather than on the volume of work produced, learning orally, oral testing, and fostering a team spirit. "What works is to understand what they are capable of and work with that," she says. "If you work on what you want from them, you may very well be disciplining something that they have no control over. You will develop a child who is helpless, hopeless and depressed.
"Our society is set up to support the behaviors that first show themselves in these kids. They learn auditorily, and because they're so highly verbal, we talk to them all the time, answer all their questions, and that keeps them from exploring and discovering with tactile, visual and other sensory skills. We keep developing the part of them that's already developed." Because she is a poet and an artist and her husband is a physicist, Anne believes that they unknowingly helped Justin develop his right brain; she thinks his disorder would be more severe had they not shared their interests with their son. They will continue this stimulation by sending him to a summer camp that focuses on art, music and science.
One problem that Anne and her husband continue to struggle with is external: So many people do not understand what NVLD is. The flower-planting incident is a typical scenario. "We tend to hold others responsible for our lack of clarity," explains Anne. "When we don't realize that there's a deficit in a child, we make up things. That parent, I'm imagining, had made up that my son was rude, uncooperative, had emotional problems, problems at home, unsuccessful bonding with his mother."
These attitudes can be very disabling to the parents as well. "Often people have asked me if my husband and I are having problems," says Anne. If outsiders are not suggesting that, then they are warning Anne of being overprotective and complaining that Justin is spoiled. Anne sits in class every day with Justin so that she can help him understand what is going on, and she will continue to do so until he is in an appropriate classroom environment. "His teacher says that Justin is a mommy's boy, he is fine if I'm there, and that he needs to break that at some point," she says. "What she doesn't understand is that he's fine when I'm there because I can explain to him what she's talking about. It made me mad - one of our best tools is our relationship with him."
Between that relationship and the treatment received, Anne sees improvements in Justin. "To see him smile! He has a lot of good days now," she says happily. Justin has been invited to play at friends' homes several times, and he has learned to tell adults that he has a different learning style from most children - he even told his grandparents that spanking does not help him learn. This is a far different outcome from Rourke's blanket prognosis of children with NVLD.
Anne believes that a prognosis should not even be made: "Prognosis is saying, 'Here's how it's going to turn out.' That's the future, and no one can do that. It really makes me mad when Rourke says, 'Prognosis is grim.' He doesn't know what we have up our sleeves, and he doesn't know my tenacious commitment to that little kid. Prognosis is based on resources I can gather and modifications I can make. That's the whole point of therapy. What changes can I make in the potential outcome? That's based on interventions I do, and factored into that are my faith and my willingness to work hard and change paths over and over again if something's not working.
"We should say, 'Typically, without any intervention, here's what we can expect. With intervention, we have a lot of hope.' There are things you can do that seem to make a big difference, and any difference with these kids is worth working for. I believe that they have something important to bring to our world because they see things from such a different point of view. That will come out, if we let it, and if we don't damage it."
*Names have been changed to protect the privacy of the family.
If you are interested in more information or would like to participate in or contribute to a study regarding NVLD, contact Rondalyn Whitney, MOTS or Amanda Sorensen, MOTS at 510 869 8925; 408 725 2503 or email:RONDALYN@aol.com.
This article was reprinted with permission of the author.
Do you have a story your would like to share with us? email: NLDline@aol.com.
Rourke, B. (1995). The Syndrome of NLD. New York: Guilford Press.
Smith, S. (1979) No Easy Answers: The Learning Disabled Child at Home and at School. New York: Bantam Books.
Thompson, Sue. The Source for Nonverbal Learning Disorders. East Moline, Illinois: LinguiSystems.
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