7/2/2008 6:02:00 PM Email this article â€¢ Print this article
Our Children’s Brains Part XVII: More Than Just Clumsy: What It’s Like to Live With Nonverbal Learning Disorder
By Pia Savage
The plane was late. The terminal was wall-to-wall people, and the ladies room could be charitably described as gross. For some reason, probably to remain sane, I began singing “I fought the law and the law won” over and over again as loudly as I could. Fortunately, I was singing this in my head, for had I been singing out loud, the law probably would have carted me away. I hear music perfectly in my head, but am totally tone deaf.
When I was a child, a piano teacher came to our house to give my sister and me our first lesson. She couldn’t say enough great things about my sister.
“But her,” she said, about me. “How can you even think of giving her lessons? She’s retarded.”
My parents tried to stop the piano teacher from talking, but I never forgot what she said. My father, who thought I could be perfect if I only tried harder, asked me to practice so I could “show” the teacher. My mother told him to drop it. He realized how sad I was and turned it into a joke. We all knew my father had taken piano lessons for seven years and could play one song, “The Anniversary Waltz,” which he played often and not always appropriately. He played it that day, and I laughed, but my heart was broken. I had already been kicked out of ballet lessons. I had already been kicked out of softball. I still, to this day, wish I could sing, dance and play an instrument or a sport.
My first week at college, I was asked to join a band as I had the chick rock-star look down perfectly.
“I can’t sing,” I said.
“You can play the tambourine.”
“I have no sense of rhythm.”
“You can just stand there and pretend.”
I couldn’t even do that-or wouldn’t, of course. My confidence level was somewhere below a minus-10. If the police came and asked somebody to confess to having begun World War II, I would have confessed. That I hadn’t been born then was but a minor detail. I was guilty of everything.
There was so much that I couldn’t do. I couldn’t learn another language, nor spell, and my handwriting was illegible. I couldn’t learn math past percentages. I was probably only good at arithmetic because my father was a CPA who would drill me every night. Then again, he would drill me in spelling words, and it’s only been in the past few years that I have been at a computer constantly, that anything about spelling has begun to make sense. I never learned the rules of grammar, and still have to think to remember what an “adjective,” “noun” or any other part of speech is.
Yet I’m able to use words in ways that few people can. My writing ability is purely instinctive. I was one of the most-read personal bloggers for over two years. Trust me, I had no idea what I was doing. My blog didn’t have a master plan. I didn’t have a theme. My posts were long. Were I to begin blogging now that there are “rules,” I wouldn’t even attempt to begin a blog.
I have many deficits and yet I’m smart. My IQ has been tested as well above average. I confuse people constantly.
I have nonverbal learning disorder, or NLD. That means I spend too much time being angry because inside me is a very smart person who can’t tie her shoelaces properly and only recently has begun to learn order in every sense.
NLD is diagnosed in children who may show very impressive verbal, reading, spelling and rote memory skills, but very weak motor, social, sensory, and visual-spatial abilities. NLD is a neurological disorder overlapping with and possibly occupying the same end of the autism spectrum as Asperger’s syndrome. It originates in the brain’s right hemisphere. This is the part of the brain that deals with performance-based information, and according to the Nonverbal Learning Disorder Association, when there is a deficit, it is in “visual-spatial, intuitive, organizational, evaluative, and holistic processing functions.” If you saw me in person, you would know why it is also known as the “clumsy child syndrome.”
I couldn’t clean my room when I was a kid, and I couldn’t clean my apartment properly as an adult. I was sloppy. I use the past tense now because I learned to fake it. Maybe everybody fakes their way through life. I wouldn’t know. I’m too busy trying to right myself.
I had many secrets as a child. I didn’t want to hurt my parents so I didn’t tell them that kids would tease me beginning around age 9 because I couldn’t run, catch or throw a ball, or do any of the things necessary for social success. My parents would tell me to try harder. My father devised exercises that didn’t help. My parents tried so hard; I felt so bad for them.
I had my first fight with a therapist when I was 9. What was I doing in therapy? Nine-year-olds aren’t supposed to be in therapy, but in many ways I was never a typical child. I could sense that I was different. My parents watched me try so hard and their hearts broke. I went for tests at NYU. I only remember being given an IQ test, verbally. The tester yelled at me because I did so well but didn’t know what “Genesis” was. I was 10 years old and my family wasn’t religious. How was I supposed to know it was the first book in the Bible? When the test was over I ran to my parents and told them they were failures as parents because the woman said everybody was supposed to know that. Looking back, I’m a bit shocked my parents didn’t become religious fundamentalists in the hope that it would help me. I found out later that particular IQ test was supposed to be given to adults, not fifth-grade girls, and I still did incredibly well. There were many other tests. The results were inconclusive. They thought I might have had, I found out later, a touch of cerebral palsy.
I am awkward and uncoordinated and when under stress it gets worse. As a child I did not have the grace of other young girls, nor the fluidity of movement, speech and thought. My years as a child in Queens and adolescent in the Jericho school system were nightmarish. I would constantly be berated by teachers for sloppy notebooks and illegible handwriting-singled out and humiliated in front of the classroom. I was a space case, they’d say, and I was called “stupid” by teachers in front of my classmates. Classmates, keep in mind, who already thought I was a physical mess-clumsy and uncoordinated.
My first panic attack was on notebook inspection day in second grade. As my last name begins with an “S” I had much time to wait and imagine the consequences. Mrs. Schrieber was thrilled with most kids’ notebooks. We were 2-1, the smart class. I’m sure she had bad things to say about a few people. But nothing compared to what happened when I walked up to her desk and she took my notebook. Silence. Dead silence. Then she screamed. She had never seen a notebook that was as bad as mine. She held it out for the class to see. None of my notes were in order. My handwriting was illegible.
I was 7 and my hands were shaking. I couldn’t catch my breath. The room spun. I thought I was going to faint and almost wanted to. When she spoke to me and demanded answers about the notebook’s condition I couldn’t answer even had I a ready answer. I didn’t know why it was so bad. If I could have have made it better I would have. My parents made one of their frequent trips to school. They could only supervise my homework; they couldn’t be in class with me. My parents didn’t want school to be my whole life.
I tested exceptionally well on standardized tests. As long as they played a role I couldn’t fail. That made both my second and fourth grade teachers crazy. My fourth grade teacher, Mrs. Sutter, told me in front of the whole class that I didn’t deserve to be in a “1” class. She said I was “a sloppy, lazy girl” who didn’t think like the other girls. I was developing early and wasn’t proud of that. She pointed my pubescent body out to the other kids, remarking about my breasts. She would not have felt entitled to treat me this way had I been a student she respected. Somehow that got back to my mother, who seemed more upset about my new bad body image than my being taken out of a “1” class.
Outside of school I had neighborhood friends who I knew didn’t really “get” me or like me. Non-competitive sports calmed me and on my own I’d roller skate and ice skate (badly) because I enjoyed going round and round the rink. My parents insisted that I spend at least as much time doing these types of activities as I would doing homework. My mother got me an adult library card in second grade and I would take out the maximum amount of five books each week. Friends and family couldn’t believe that I could read so fast and comprehend the material. Even kids were constantly testing me to make sure I understood.
It was never easy. I was the girl who had to give an oral report in eighth grade and no words came from my mouth. My teacher found that very funny.
My fellow students said they didn’t want to be president of our homeroom. So that same teacher insisted that I be president. Everybody laughed. My teacher scored points with the popular kids and got rid of that pesky job. She told me I had no choice. I have never forgotten that feeling so similar to being sent to the corner of the room in the dunce cap.
When I reached junior high I failed typing and almost failed everything else. My typing teacher would yell because I have a light touch and couldn’t get the letters to come out. Since I couldn’t memorize the keyboard that really didn’t matter. This upset my father, who would help me practice on his typewriter every night. In our house typing wasn’t a “girl” thing, but a necessary skill in life. Once again I thought I was disappointing my father, who didn’t even really care that I wasn’t a good student. He just wanted me to speak up for myself, be neat, have hair that didn’t fall into my face, and now type.
In junior high, every morning, as we waited for the bus I, the odd girl out, would be pushed into the shrubs. The bus driver would see this as he drove up. Not his problem. It was acceptable to treat me as if I were trash, and one thing I realized early in life; kids imitate adults. These weren’t bad kids. I’m friendly with some now. If the teachers thought I was trash it was acceptable for kids to treat me that way.
School is torture for an undiagnosed NLD child. You never really grow used to being yelled at. It wasn’t as if I were a bad girl. I never cut classes. I didn’t hang out in the bathroom. I didn’t even have anybody to eat lunch with. But there were very brief moments of triumph as well. A ninth grade art teacher loved my primitive paintings and even entered them in an art fair, but he left the school system. My tenth grade biology teacher saw that I understood the material but couldn’t answer standard four choice tests. He gave me special essay tests. And I did well.
It was better in high school. I lost 35 pounds sophomore year and teachers don’t make fun of pretty girls. But until then it was open season. I often overheard kids saying that I had wonderful parents who had a great decorated house and how could I be their daughter? I was the girl who constantly spilled things on my clothes.
Recalling these stories, I’m shaking as I type this.
It wasn’t until college, at C.W. Post, that I began to become the person I was supposed to be. True, it took me three colleges and eight years on and off to graduate, but there was this thing about me that attracted people when I wasn’t repelling others. I felt half-a-beat off, but I made friends. But when you’re out of the hell of high school, in the real world at college, the types of idiosyncrasies I had were more accepted. I was now quirky, interesting.
There was a psychologist at college whose clients included a large portion of my friends, and he would discuss me with all of them. Even at 18 I intuitively knew it was wrong for a doctor to discuss somebody with so many people. Then I wondered why I was discussed so much.
I understood why at college my resident assistant and my roommate conspired to take away my cigarettes and have them analyzed for drugs, because of my odd behaviors-a very illegal search that had fortunate consequences for me, by the way. I was given my own room in the basement of the dorm (and a curfew). I could, however, go in and out of my window at will. The thought of me jumping up into a window and jumping down to the ground makes me laugh, as I’m the least coordinated person I know. But I had a full social life that didn’t include sitting around the dorm.
I didn’t tell my parents about the cigarette incident for a long, long time. But I did tell them that I had been kicked out of Driver’s Ed in high school because I couldn’t learn the “10-2” position. The teacher told everybody that I came to school stoned. I think I had at that point been stoned twice in my life and never in school and certainly never in Driver’s Ed. But, hey, call a 17-year-old girl a stoner and you might just be creating one.
My mind was a roadmap I couldn’t follow (I can’t understand directions anyway). and I was unable to understand anything when it applied to me. I would hang in clubs in Greenwich Village and always joked that a man would practically have to hit me in the head to get me to notice him. So I moved in with the one who accidentally did hit me in the head.
Another joke of mine was that I had been born divorced from everything. When I was 20, I dropped out of college, traveled in Europe with people I met on the plane who dropped me soon after, because frankly I was weird. I went to Israel to work on a kibbutz, from which I was eventually kicked out. I couldn’t keep my area clean. There was a boy at home, and we married. The marriage couldn’t have worked had we worked at it. We were too young and I had problems nobody could give a name to.
I moved in with friends from college who neglected to tell me they had turned into junkies. And they could have been carrying signs and I wouldn’t have noticed. I was going to school in Manhattan, employed, doing volunteer work, and just wasn’t aware. That’s part of it: I am oblivious to the obvious. I went to Cambridge, Mass., to visit my sister for a weekend and didn’t come back to New York. I made friends there, took a job at an exclusive boutique and enrolled for grad courses at Boston University. It was the first time school made sense. I hadn’t realized until then that I learn conceptually. I’m not a rote learner. I’m not a deductive thinker, but an inductive one. I easily see patterns. Remember, I look beyond the obvious; as the obvious doesn’t exist for me. The higher up the school chain I go, the better I do.
I returned to New York and began what was supposed to be a six-week temp job coding documents for a large corporate divestment case that somehow turned into a 13-year career, on and off. I managed a complex project where the client consisted of a consortium of seven law firms. I excelled at hiring, training and motivating, and had learned to delegate years earlier so that others could do the work I was unable to do. But this particular project was so difficult because of my lack of organizational skills that I threw up every morning on the walk to work.
I laid myself off and proceeded to lose weight. I couldn’t stop walking. In my distinctive awkward gait, I must have walked every block in Manhattan a few times. I thought I was losing my mind. I found a well-known psychiatrist who sent me to a pharmapsychiatrist who sent me to a testing psychologist. I was his first adult patient and could only fit into the children’s seats since I was so thin at that point. He would give me a test and come back two minutes later saying, “You really can’t do this, can you?” According to him I was so learning disabled that he couldn’t understand how I could function in the real world. But if I was willing, he might be able to help me. I looked at the child-sized desks. My adult-sized ego had taken a beating it never really would get over. He was telling me everything I couldn’t do, but nothing that I could do.
The fraud I had always thought I was wasn’t in my imagination. There was something more, something nobody was able to name: NLD.
I held several jobs, but I had things to prove so I went to grad school for social work. I quickly figured out that they had made a bogus language to explain simple concepts. Here, I excelled. I studied constantly. Remember how I felt guilty about everything, feeling like a fraud about all aspects of my life? When I received my undergraduate degree, I kept feeling as if my father must have bought it-of course, I could not have earned that on my own-though I knew he didn’t. What happened was that I had learned to study. When my father, who thought I was brilliant despite what the world was telling him, died, I was on a mission to prove to a dead father that I was smart. This made no sense even to me, and I should have talked about it to my newest therapist, but I couldn’t put it into words. Everything I did was to prove myself. I had to show the tester that I wasn’t as stupid as he thought. I passed the then-certification now-licensing exam for the CSW in 45 minutes in my last semester. I learned how to help a lot of different types of people, but still, there was no help for me.
I was still seeing the pharmapsychiatrist since I had become addicted to Klonopin. I was depressed for the first time in my life. You see, I had always been too anxious to be depressed. There seemed to be so little help for me
Grad school was supposed to be a rigorous intellectual exercise, but with NLD, seventh grade was actually much more difficult. That’s a good thing for all of the parents out there who are worried about their NLD child’s future. There is hope. And more so nowadays, when NLD is diagnosed earlier, or even diagnosed at all for that matter.
Something was very wrong and nobody could help me. Asperger’s syndrome, a high-functioning form of autism that is often manifested similarly to NLD, had become a popular diagnosis while I was in school, and I was given a very half-hearted unofficial diagnosis. Asperger’s is that disorder where those with the syndrome are awkward both socially and physically, often very smart and somewhat offbeat. My diagnosis was given half-heartedly and not “officially” because I was too social. (The Asperger’s diagnosis is evolving, and being social no longer prevents a child from getting the diagnosis.) I couldn’t have lived that Asperger’s life as though I had it. The physical symptoms fit; nothing else did at the time.
I was doing everything possible to find out what was wrong and all I was getting were more questions. I hated being fixated on problems. I went on, because despite it all I loved my crazy life.
People talk about the shock of recognition when they find out their problem has a name. Asperger’s didn’t do it for me. And for good reason. It was wrong. I began to be very resentful of all the publicity it was getting. It felt as if it became a catch-all.
When I was finally diagnosed with NLD with the subset developmental coordination disorder (dyspraxia, also known as the “clumsy child syndrome”), by a specialist in the field, I felt that shock of recognition. I wished that my parents were here to understand that I had true problems. Learning about it changed my life. For the first time I took total control.
I’ve been a Manhattanite for a while, and I recently realized it had been the wrong place for me to be living in. My best friend spent days pointing out that people bump into me more than I bump into them. I can’t measure space properly so I overcompensate. I’m always the one to say “sorry.” And I had already said “sorry” to everyone I could in my hometown of Jericho.
I’m now living in South Carolina, because New York has too much stimuli for me. I spend a lot of time chilling out and trying to get back into shape. I want a great social life. I cheated myself out of so much in the past. Basically I gave up men after the learning disability tests and haven’t found anything to replace them with. I denied myself having children because I was so damaged. As harsh as this sounds, I would love to kill the doctor who told me I shouldn’t be functional, but I can’t remember his name. If I give up on living, if I stop improving myself, I let him win. And I can never do that.
So I’ll continue to sing on-key in my head, but now I’ll also sing out loud as well, off-key and with pride.
Pia Savage is one of the Internet’s most popular bloggers. You can check out her blog at www.CourtingDestiny.com.
What You Need To Know About Nonverbal Learning Disorder
By Pia Savage
One of the most misdiagnosed of all disorders, nonverbal learning disorder (NLD) is a neuropsychological condition that originates in the brain’s right hemisphere. The condition often goes undiagnosed because the child is usually eloquent, retains auditory material and can read at a younger than “normal” age. As with any disorder, a child can have any or all of the symptoms, at different levels of impairment.
NLD, with an already high official prevalence rate of 6 percent, is believed by many experts to be much more common than that since it is so often misdiagnosed or not diagnosed at all.
The NLD child will lack coordination, fine and gross motor skills and have balance problems. Though the child retains auditory material, he or she doesn’t retain images, and has faulty visual recall. The child’s sense of spatial relations is severely impaired. Spatial relations are key to understanding the world, for example, the distance between two people. A child might stand too close or too far, in an intuitive attempt to make up for this spatial deficit. People think that these children aren’t paying attention to their surroundings, when, in fact, the child is paying too much attention subconsciously. The NLD child might accidentally touch another person in a way the person might think the child is actually hitting him or her.
The child will have difficulty with executive function. According to www.nldline.com, this includes decision making, planning, initiative, assigning priority, sequencing, motor control, emotional regulation, inhibition, problem solving, planning, impulse control, establishing goals, monitoring results of action, and self-correcting. Again, the child might have all or few of these problems and in differing levels of severity. In my experience, this is especially true in motor skill, organization and spatial relations areas.
The NLD child has problems with comprehending nonverbal communication, has difficulty adjusting to new situations and transitions and has deficits in both social situations and social judgment.
Kinesthetic processing is the ability to detect sensory stimuli such as body position, weight, or movement of the muscles, tendons and joints. Children with NLD lack this vital ability to master the physical world around them. Since the child can’t rely upon kinesthetic processing or spatial relations, he or she is unable to generalize information and little is learned from experience or repetition. Again, there are degrees of severity and a child’s innate intelligence may compensate.
There can be problems in visual, auditory, tactile and/or olfactory sensory abilities.
And there’s more: When you’re not in sync with the world around you, stress, anxiety, panic and phobias develop, and are often the by-products.
As a guideline, check out the assessment scale devised by clinical psychologist David B. Goldstein, Ph.D., at www.nldontheweb.org/Goldstein_1.htm, a scale that parents can fill out. NLD diagnosis is made more difficult because the child often has other problems, or problems that mimic NLD, such as Asperger’s, a high functioning form of autism. A child with NLD may appear to suffer from attention deficit/hyperactivity disorder (ADHD) or an assortment of physical, developmental or mental disorders. With an NLD child, cognitive testing shows a significant difference between verbal and performance scores. The verbal score will often be very superior.
A good prognosis for the NLD child depends on early identification and intervention. As each child is different, the treatment plan will differ, but it should be holistic and encompass every area of the child’s life, including every staff member who comes into contact with the child at school. An Individualized Educational Program (IEP) should reflect the child’s needs: The child’s assignments should be modified daily and treatment constantly revised. As much visual stimulation as possible should be taken out of the classroom setting and enough room should be added on tests to account for poor handwriting. With proper identification and treatment, the child should be able to live a “normal” life.
For more information visit www.nldline.com and www.asdfocus.com/factnld.htm
Posted: Sunday, July 13, 2008
Article comment by:
This is a well written, not so clinical as to put me to sleep, explanation. A way the general public can understand something which is hard to expalin. Thank you Ms. Savage
Posted: Thursday, July 10, 2008
Article comment by:
Your syle always leaves me breathless my dear Pia… you are the only one I know who can explain something without resorting to, well, explanations… brilliant, as are you!
Posted: Wednesday, July 09, 2008
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You did a FANTASTIC job with this article. I am in graduate school, and one of my papers was on NVLD. I swear I see much of this in myself, as well as one of my twin sons. Coincidentally, he was diagnosed with developmental coordination disorder by the developmental pediatrician. I need to get an eval from a neuropsych for both of us. Thank you SO much for writing this. I know this was heart-wrenching for you to relive the past memories. I found out about your article from 3 Word Wednesday. 🙂 Warm regards, Michelle aka The Beartwinsmom
Posted: Tuesday, July 08, 2008
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Although I’m a man, I easily identified with so much in your article Pia. It could well have been my story and as you are aware, the struggles we endure subside a bit with time but the pain of the past is more difficult to erase. My one wish is that the public be made more aware of the essence of our disability and the labeling ceases to exist. We can contribute much to society if employers, social contacts and even family members, give us the fair opportunity we are entitled to. Keep the journey alive!
Posted: Monday, July 07, 2008
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An excellent way of explaining the unknowable. Certainly, I came away understanding the “non-verbal” part of the disability.
Posted: Friday, July 04, 2008
Article comment by:
Excellent article. And an inspiration to anyone diagnosed with NLD or, for that matter, any other diagnosis.
Posted: Friday, July 04, 2008
Article comment by:
Pia, your story was so inspiring. i also have nvld and was not diagnosed until I was 30. I went through years of hell in jobs I had no success in as well as relationships. I have tired to take my own life now look like I am facing divorce. this disability has cause me a great deal of pain. I am trying to move forward. Please pray for me.
Posted: Thursday, July 03, 2008
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as an addendum, this writer, Pia Savage, is is highly compassionate, both in her personal life, and, in the world; ie. she is PASSIONATE about safeguarding human rights everywhere. A kinder individual would be hard to find. She also enjoys dancing – that makes her a good dancer. . .
Posted: Thursday, July 03, 2008
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A wonderful truth within an equally wonderful story. Whether one has a non verbal learning disorder, has a child with it, or just wants a good read about a condition they know nothing about, this is it. Thanks for this wonderful piece.