Living with non-verbal learning disabilities

Here's the final part of our look at non-verbal learning disabilities.  This is a terrific article I found on the Canadian Family website about two families and their journeys with NVLD kids.

Rhonda

Non-Verbal Learning Disability

Your child is intelligent and articulate but struggling to keep up in the classroom and schoolyard. She may have a learning disability you've probably never heard of.

February 16th, 2007
By Jonathan Burkinshaw

Cheryl Pidgeon had been a teacher for 20 years, but when her bright, articulate daughter started school and immediately began having problems, even Cheryl’s broad experience could not tell her what was wrong. “Leah was unable to understand and follow her teacher’s instructions and so she had difficulty doing her homework. She had problems with writing assignments and struggled in math,” Cheryl says. In the schoolyard, Leah would miss various social cues. As a result, she tended not to get involved in group activities; instead, she would hang back watching and imitating other children’s play.

By the time Leah reached Grade 2, the situation had worsened to the point that the Waterloo, Ont., mom knew she had to seek help for her daughter. So five years ago, Cheryl took Leah for a private psychological assessment and learned that her daughter had non-verbal learning disorder (NLD), something Cheryl had never heard of.

The NLD syndrome involves a cluster of neuropsychological, emotional, social and academic characteristics that reflect a deficiency in non-verbal reasoning. While possessing advanced speaking and reading skills and often excelling at tasks requiring rote memorization, children with NLD typically have poor organizational and problem-solving competency. Their mathematical reasoning ability is weak and their visual-spatial and fine motor skills are underdeveloped. These children also have difficulty comprehending and responding to the nuances of body language and vocal tone and inflection. Often the point of schoolyard banter and teasing is completely lost on them and so they get ostracized by their peers for being “out to lunch.”

NLD kids may also have trouble telling time, colouring maps, deciphering graphs, keeping their place on the page while reading, and understanding the streetwise humour and visual cues of cartoon strips. They may find it hard to pay attention in class, organize their desks and essays, understand teachers’ instructions and, later, to take notes in university lectures. William MacDonald (a pseudonym) was diagnosed with NLD when his suffering at the hands of bullies escalated to the point that he became physically ill upon entering the school building. He also began expressing thoughts of suicide. “It was this that made us seek professional help,” says his mother, Brenda, of Waterloo, Ont.

“The new environment faces and expectations that William encountered in Grade 7 made him fall apart,” she says. “His stress, anxiety and insecurity only led to further abuse at the hands of bullies.”
A hospital psychiatrist recognized that William was suffering from NLD, which helped explain both the boy’s social difficulties and his academic struggles. “We now understood why he was unable to pick up the social cues that others learn naturally,” says his mother. “He was always a big talker with an impressive vocabulary—we joked that his first word as a baby was ‘actually’— but he had a terrible time getting his thoughts and knowledge down on paper.”

Almost two years after his diagnosis, William’s spelling and writing skills remain at an early elementary-grade level. The 14- year-old also has the organizational problems so typical of the syndrome: so far this year, he’s lost two watches and six pairs of gym shorts! Needless to say, even with good verbal skills, the estimated 1% of children with NLD find school very difficult, especially as the rote learning of the early grades begins to give way to the more complex reasoning demanded in later elementary school. To make matters worse, teachers and psychologists are often unaware of the disorder and hence unable to recognize its symptoms. “NLD is the new learning disability on the block, so some teachers ask, ‘Is it really real, or is it just something someone has come up with to complicate our lives?” says Cheryl. She has since founded a support group in Kitchener for parent of kids with NLD.

William’s mother, Brenda, found that same lack of awareness among the professionals she approached for help. “Many psychologists were ignorant or skeptical of NLD. Our local learning disability association had few resources on the syndrome. Most of the information I found came from my own research and from other parents I connected with on the internet.”

Diagnosis is often made more difficult because an affected child’s NLD is frequently masked by superb verbal skills or general intelligence. As a result, academic failures and social awkwardness are moralistically attributed to a poor work ethic or willful acting up. William, for example, was accused of being “lazy and pampered” because of his disorganization and writing difficulties.

NLD is often misdiagnosed as attention deficit hyperactivity disorder (ADHD) or Asperger’s syndrome, both of which share many of the same symptoms. A diagnosis of ADHD is ruled out if the child receives standard medical treatment for ADHD but still shows NLD-like problems. And although a child may have only a minor deficit in non-verbal skills, an attention problem can exacerbate it to the point that it resembles full-blown NLD.

Distinguishing NLD from Asperger’s is more difficult; in fact, many experts place the two conditions close together on a spectrum and can’t agree where one ends and the other begins. Generally speaking, however, those with Asperger’s are likelier to display severe social impairment but do his school day to organize his work. And he has frequent sessions with the school counsellor to discuss his stress. With these accommodations, his progress has been excellent. The teenager attends a social skills training program that teaches strategies for dealing with peers. Although he still sometimes misses his friends’ sarcasm or innuendo, he can now join in the laughter and ask to be let in on the joke. “Life is good right now,” says Brenda.

Leah, now entering Grade 8, has made “fabulous progress,” says her relieved mom—thanks to such accommodations as getting copies of notes from the teacher instead of taking them from the blackboard. Leah dictates her essays to a parent instead of writing them out herself. “With the right management strategies, kids with NLD can be very successful,” Cheryl says.

If those are the remedies, what are the causes? Rourke, who has researched the disorder since the late 1960s, says the neurological problem behind NLD is a deficit in the brain’s white matter, which consists of nerve cells covered in a white myelin sheath and connects different parts of the nervous system. Damage to the brain from trauma and toxins, as well as neurological conditions such as multiple sclerosis, can lead to white-matter deficits and NLD symptoms.

It is often difficult, however, to determine what caused any particular case. For William his birth 10 weeks early and the brain damage suffered shortly afterwards were likely the major factors.
As Leah’s mother laments, the lack of NLD awareness among educators compounds the academic and social difficulties of undiagnosed kids. Even those who are successfully diagnosed must cope with what Rourke brands as the abysmal quality and availability of management resources in Canada. “NLD is a really devastating situation, especially if it goes untreated much past the age of 7 or 8,” he says. His best advice to concerned parents is to consult a clinical neuropsychologist specializing in children, as this is the professional optimally equipped to make a diagnosis and suggest management options.