NLD in Ontario

July Update

2011-07-10T16:46:00.000-04:00

Boys of Few Words: Raising Our Sons to Communicate and Connect, by Dr. Adam Cox
Some NLD resources
Article on NLD in Canadian Family magazine
Mindware Academy
Advice on disability credit in Canada
Curtis Blake Centre, Springfield
Chesapeake Bay Academy
Winston Prep
Survey: Does your child have NVLD? developed by Dr. David B. Goldstein.

Next Generation of Rain Men?

2011-01-25T21:55:00.001-05:00

Stephen Marche in today's National Post follows a trend of spotting Asperger's Syndrome in popular culture, though with a twist:

These various portrayals of Asperger’s on television naturally have nothing to do with any increased sensitivity toward the incredibly complicated reality of Asperger’s or other spectrum autism disorders. These characters feed a great hunger within pop culture at large for characters with an asocial attitude toward society.

The twist is the Marche proposes that "aspies" are "mechanistic."

When Britta (Gillian Jacobs) and Jeff (Joel McHale) are fighting, Abed provides the explanation for why they must stop: “To be blunt, Jeff and Britta is no Ross and Rachel. Your sexual tension and lack of chemistry are putting us all on edge, which is why, ironically, and hear this on every level, you’re keeping us from being Friends.” It’s that “on every level” which is so perfect; Abed’s inability to process the world except through the mechanistic formulae of sitcoms is what gives him insight rather than prevents it.

And mechanistic, in his view, is insightful, given "our new society — the one being generated by Facebook, by the Internet in all its speed and power — is essentially mechanistic." He concludes: "The reason we want to see Sheldon and Abed and the rest is that the whole world is going their way."

Which I guess would be great for folks with NLD, if it were true. If the world is mechanistic, and those with Asperger's/NLD are mechanistic, then their engagement with the world will become easier. Right?

Wrong.

First, because there is no "their way." Which Marche acknowledged earlier: the incredibly complicated reality of Asperger's. Not all folks with Asperger's are alike. In fact, diversity is a characteristic.

Second, the world of social media is actually a mindfield for folks with social disabilities. Facebook is not mechanistic. It amplifies existing human interactions and the pressures of networks and linking with peers. The skills to deal with these pressures are problematic for those on the austic spectrum.

Third, because the hope for Asperger's/NLD folks isn't in the world becoming more mechanistic (nor are the "neurologically normal" becoming more Asperger's-like due to technology).

The hope is in, well. See below.

p.s. I did agree with one implication Marche implied. That Asperger's folks can sometimes see reality better than others. My NLD-step-son is a great truth teller. Which is a great gift, if sometimes awkward.

It's Okay

2011-01-01T13:48:00.001-05:00

I have been thinking about this post for a while now. Basically, it goes like this: "It's okay."

I haven't written much about our personal situation of late. Most of the posts from the past year have been links related to NLD that I've found one way or another. Many are worth returning to. Nalo Hopkinson's video might be the best.

I also wanted to go back to a comment I made in a post from 2008. It was a post that gave an overview of some books about NLD. About Briding the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalyn Varney Whitney (2002), I wrote:

The tone of this book is like a Beach Boys song on a summer day. It is soothing and cheerful and it is hard to imagine that there is anything wrong with the world. However, there is much wrong with the world, and I just couldn't sustain the optimistic frame of mind implied by this book all the way through to the finish. There is much in this book that is useful, and others may find the tone more suited to their view of the world, but I ultimately decided I wanted to know more "hard truths" and a more neutral approach to the condition, its ramifications and remediations.

Two years later, I'd like to qualify my qualification. In short, I'm more optimistic now. It's okay. We're doing okay. My step-son, now ten, is doing great, in fact.

With increased maturity has come increased self-awareness, better ability to emotionally regulate, increased self-confidence, fewer (hardly any) "meltdowns," and a wicked, wicked sense of humour. (Some NLD literature says NLDers don't get humour; Varney Whitney dismissed that as untrue; I do, too.)
With the passage of time, we (the adults) have also learned to better manage the environment to remove unnecessary stimulous, to reduce unpredictability in time planning, to more openly discuss expectations in advance, to reinforce the essential ambiguity of many things, to emphasize that everyone is different. In short, to try to keep the world simple while acknowledging its unavoidable complexities.

And it's working out for all of us.

We have also taken advantage of different classes of professionals. Teachers in grades 3, 4 and 5 have been great, and our communication with them as been so, so much better than the annus horrilibus of grade 2. A good teacher makes all the difference.

We also continue to seek service from a child psychologist and have gone to social skills groups.

This fall, our 10-year-old has demonstrated (asked for, just gone and taken) more independence than ever. He has walked to school alone, for example. Age appropriate behaviour, yes, but not an opportunity he sought previously. Similarly, he is more capable of dressing himself, bathing himself, brushing teeth, and even doing bits of homework. With verbal reminders. With support from an accommodating environment. With the foundation of the comfortable feeling of home.

A note on accommodation is where I want to end this. There was a story in today's NY Times on giving Alzheimer's patients whatever they want, including chocolate. It made me think of our NLDer (strange but true). Three years ago I couldn't settle in my head how much accommodation was too much. I asked a couple of professionals along the way.

Isn't our job as parents to teach him to look after himself?

Yes, but ... always remember the difference between can't and won't. This has been, without a doubt, my biggest challenge as a parent of an NLD child.

I am a generous and patient person, but how long do I have to wait? All the professionals said what I ought to have known already: Everyone is different. We can't tell you. But you can't force it.

I have had to learn an even greater degree of patience. And I'm here to tell you: It's working.

It's okay. We're okay. Our journey continues.

NLD Around the Web

2010-11-26T22:20:00.001-05:00

What is NLD? (yet another attempted quick summary)
Blog of a cognitive neuroscientist in training
Executive function and false recall in Nonverbal Learning Disability (2010)
Nonverbal Learning Disability explained: the link to shunted hydrocephalus (2010)

Info on NLD from about the Web

2010-09-19T18:23:00.000-04:00

An NLD research project, described thusly: "As NLD is considered to be biologically based in the right hemisphere, this thesis contends that a NLD child’s inability to process his mother’s nonverbal communication may have impacted the quality of his early attachment relationships, and thus influenced the maturation of the right hemisphere. This thesis offers recommendations for appropriate accommodations and interventions for clinicians, families and schools."
Strategies for Classroom Teachers of Students with NLD (Brandon University) (PDF)
Blog of Mom with NLD Child: Every Day is Different
Another blog by a mom with an NLD child
Summer camp for kids with NLD, etc.
Creativity for non-visual thinkers (article)

New NLD links

2010-07-18T15:16:00.000-04:00

Just a few new links from across the web:

NLD brochure (pdf) (Learning Disabilities Association of Nova Scotia)
A teacher's thoughts on testing and NLD related story
NLD and autism spectrum
New gym specializes in communication disabilities

NLD Mountain

2010-06-12T13:20:00.000-04:00

I put a link to this article in the previous post, but I wanted to quote a section of it, as I thought it was good information. Here it is (emphasis added):

... nonverbal communication is clearly important. To see just how important it is, try watching a favorite TV show with the sound turned off. You still get quite a lot, don’t you? Now try watching the show with your eyes closed. Even if it’s a show where people don’t move around much, you miss a lot, right? That’s how we NLD people are. We watch life with our eyes closed. We miss a lot.

Nonverbal communication can be divided into several sorts of skills; different authors divide it slightly differently. Duke and his colleagues divide it like this:

1.Paralanguage
2.Facial expression
3.Space and touch
4.Gestures and posture
5.Rhythm and tone
(source: Nowicki and Duke)

Paralanguage and the mountain of nonverbal learning disability

Paralanguage includes all the aspects of sound that accompany speech: Tone, volume, rate of speech, and nonverbal sound patterns (all the ums, uhs, and so on while speaking). Paralanguage is especially important when you cannot see the person you are talking to, for instance, on the telephone.

Children respond to tone of voice before they learn any vocabulary. Tone of voice is critical in communicating such things as sarcasm, and, on a more basic level, to tell the difference between a simple statement: ‘John is late,’ an angry exclamation: ‘John is late!’ or a question ‘John is late?’ Many NLD people have problems both with understanding tone and with producing the appropriate tone. The former leads to confusion on the NLDers part, and the latter can lead to conflict between what NLDers are saying and how they say it; for example, saying ‘Have a good day!’ in an angry tone is likely to confuse the person you are talking to. Tone of voice communicates emotions such as anger, sadness, happiness, or excitement.

Nonverbal sound patterns refer to all the noises we make while speaking that aren’t words. Sounds like ‘Uh-huh’ (for yes) and ‘UhUh’ for no (notice how similar these are yet NT [neuro-typical] people hear the difference without a problem). ‘Mmmm-mmmm-mmmm’ can be a warning (when the second part is louder than the first, and the third is in a rising-falling pitch) or a sound of delight. NLD people can have a lot of trouble hearing these.

*

Here's another part of the article:

Emphasis and variation can radically change the meaning of a sentence. Duke, Nowicki and Martin give the following illustration (which I have changed a little): Take the sentence ‘I didn’t say John took my money.’ This sentence can mean at least seven different things.

1.That you didn’t say John took your money.
2.That someone else said that John took your money.
3.That, although you didn’t \emph{say} John took it, you think he did.
4.That you said someone other than John took your money.
5.That you loaned or gave John money
6.That John took someone else’s money.
7.That John took something else of yours.

How can it mean all these different things? Try saying the sentence first with no emphasis, and then emphasizing each different word.

NLD from 9 to 5

2010-05-15T15:52:00.000-04:00

An article about NLD in the workplace, by Kelli Bond.

An excerpt:

Divulging confidential information to the wrong individuals, asking questions or making comments perceived as intrusive by most standards, uttering remarks that can be received as discriminatory, and treating virtual strangers as long-lost friends are among the other on-the-job social blunders committed by individuals with NLD. These are related to problems perceiving and understanding that most people flex relationship styles among different individuals, have multiple complex definitions for the word "friend," and have no need to verbalize their every move and thought.

All of the aforementioned difficulties, along with literal interpretations of messages and the resulting black-and-white outlook in dealing with interpersonal conflict, often earns the employee with NLD consistent "needs to improvement" ratings on the communication and teamwork sections of performance appraisals.

Nalo Hopkinson on her NLD

2010-05-15T15:46:00.000-04:00

I had no idea she had NLD. I've read at least one of her books!

Link here to see her website

What's it like to have NLD?

2010-05-15T15:40:00.002-04:00

In the words of Peter, on this post:

By the time I was 4, it was clear I was, in my father’s words “Screwed up somehow, but not stupid”. There were no schools for such children back then (40 years ago), so my mom started one: The Gateway School of New York. She handled everything that wasn’t education, and Elizabeth Freidus (pronounced ‘freed us’ – amazingly apropos) handled education. That school helped me a lot. Now, I am on the board.

After that, I went to mainstream schools and was miserable. Really miserable. Suicidal for much of adolescence. Absolutely no friends (I mean NONE). I had one date (disastrous) before college, and only a couple in college.

Things got better. College was MUCH better than HS. And post-college was even better. I’m married. I have 2 great kids. I have 2 MAs and a PhD, and a job (as a statistician).

Understanding NLD

2010-05-15T15:33:00.000-04:00

A presentation by Binyamin Goldman

Understanding Nonverbal Learning Disabilities

View more presentations from bingold.

What Are LDs - Video

2010-05-15T15:30:00.000-04:00

NLD Kid 3rd in Spelling Contest

2010-05-15T15:26:00.001-04:00

From the news story:

The 12-year-old did it by guessing how to spell "thrasonical," which means bragging or boastful.

Neither he nor his mom and coach, Susie Hites, had seen the word before.

...

By the time he was in second grade, doctors had discovered a cyst taking up 25 percent of his brain, which led to a diagnosis of Dandy Walker Variant. The area of his brain that allows the right and left sides to communicate looks like Swiss cheese, as well, Susie Hites said.

That condition caused what's called Nonverbal Learning Disability, which is on the autism spectrum and is similar to Asperger Syndrome.

Nathan has trouble with change, and Susie Hites prepares him for what's coming each day, which helps. He has to work hard in social situations.

"He really has to try much harder than most kids," Susie Hites said, because spelling bees are social settings. Nathan has to sit still and quiet for hours on end, which is a challenge. He works hard to recognize the feelings of the other contestants, too, she said.

After the national spelling bee, others complimented him on his good sportsmanship.

"In a sense, that is as much an achievement for him as winning third place," Susie Hites said.

Nathan Hites said those competing support each other.

"Once we got down to the final four, it was high-fives for everyone," Nathan Hites said.

Florida College Program

2010-04-04T12:27:00.002-04:00

Here's a link to a Florida college with a program to assist students with learning disabilities.

NLD on YouTube

2010-04-04T12:23:00.000-04:00

Here's one of a number of videos related to NLD on YouTube.

Self-Advocacy

2010-03-12T15:35:00.000-05:00

Self-advocacy is a term my wife and I first heard from school officials two years ago, when our NLD son was in grade 2. He was forgetting his homework repeatedly. The material he was to hand in to his teacher went back and forth to school in his backpack, never seeing the light of day.

"You need to teach him to self-advocate," school officials said.

Yeah, right, we replied. How can he self-advocate when he's often overwhelmed with confusion; so dominated by anxiety; so dependent on his caregivers for so many basic organizational tasks.

But, of course, self-advocacy will ultimately be a key tool he will need to learn. How to ask for the accomodations he needs. How to recognize his limits, but also how to achieve all he is capable of.

Here's a self-advocacy resource I found online (PDF).

NLD Conference

2010-02-26T12:32:00.000-05:00

For anyone in the Pennsylvania area.... click here.

Here's the information from their website (sounds good, eh?):

Nonverbal Learning Disabilities: An Invisible Challenge to Performance

The Quaker School at Horsham will host a conference on Nonverbal Learning Disability (NLD).

Saturday, April 24, 2010
10:00 - 12:00
(9:30 - 10:00 registration)

The program is free to all.

Presenters:
Abby Huntington, OTR/L, LMFT, occupational therapist and family therapist
Dale Ellenberg, MS, OTR/L, occupational therapist
Gerry Stefanatos, D.Phil, child and adult neuropsychologist

The conference will address Nonverbal Learning Disability by providing an overview of diagnostic criteria, assessment for NLD, its developmental course, physical, academic and interpersonal manifestations, and implications for the family and home.

Abby Huntington is a marriage and family therapist with training in play therapy and an occupational therapist with certification in sensory integration. She works with families and children with a focus on social-emotional development, inter-personal communication, parenting and sibling relationships. She has worked in the Early Intervention system providing direct service to children and families in homes and providing training to OTs and PTs on working with families. She lectures at local universities and consults with schools regarding strategies for addressing sensory-motor development and non-verbal skill deficits in the classroom and school community.

Dale Ellenberg is an occupational therapist certified in sensory processing disorders and intervention, and Interactive Metronome. She has extensive experience working with school-aged children and the early intervention population and their families in schools and in the home. She has a private practice in addition to being on staff at TQS.

Gerry A Stefanatos is Associate Professor and director of the Cognitive Neurophysiology Laboratory at Temple University (www.tuneurolab.com). He is both a neuroscientist and clinical neuropsychologist with 25 years of research and clinical experience working with children with neurodevelopmental issues. He has published extensively on nonverbal learning disability and related conditions.

The goals of this workshop are to (1) provide a deeper understanding of the diagnosis of Nonverbal Learning Disability (2) learn how to recognize, assess, and diagnose for NLD and its subtypes, (3) explore remedial strategies - modifications and adaptation of instruction and environment, to enhance personal and academic success.

The conference will be held at the library of The Quaker School at Horsham, 250 Meetinghouse Road, Horsham, PA 19044. For further information, please call the school office at 215.674.2875

Please RSVP to Mia Glenn: mglenn@quakerschool.org

Accepting Life with NLD

2010-02-19T20:49:00.000-05:00

An article about the 4 stages of accepting living with NLD.

Sounds a lot like the stages of grief.

New links

2010-02-10T21:28:00.000-05:00

How to be NLD and get a job? Apparently this book offers help. Haven't read it, but here's the link:

Employment for Individuals with AS or NVLD (2004)

Also, here's link to a blog by a mother with a son with NLD:

Instructions for Life

Finally, a link to a research article on diagnosing NLD (you have to pay to see the actual article):

The Utility of Math Difficulties, Internalized Psychopathology, and Visual-Spatial Deficits to Identify Children With the Nonverbal Learning Disability Syndrome: Evidence for a Visualspatial Disability

Getting Organized

2010-02-06T22:13:00.003-05:00

Speaking of executive functioning, here's an article by a guy with NLD (now a PhD statistician of all things) and his life-long struggle to "be organized."

Stop, Think, Act, Review

2010-02-06T22:06:00.000-05:00

Problem solving: stop, think, act, review.

Last fall, my step-son came home from his "friendship club" with these words on the five points of a star.

Since, it has become somthing of a mantra.

As anyone familiar with NLD is well aware, emotional regulation can be tough of NLD kids, particularly in the midst of an unexpected situation.

Dealing with change, I tell everyone, is what I witness as the NLDer's biggest struggle.

When my son started verbalizing his internal struggle, I felt a sense of relief. Previously, he'd just acted out his anger and frustration. Then one day he said, "That's not what I expected."

Bingo!

We try to verbalize that point as often as possible, in as many different formulations as possible: everyone's different, things change, you never know what you're going to get, etc. The language is full of verbal coping strategies.

This star was a new tool. "What do you do with it?" I asked.

To my surprise, he acted out a pantomime. He stood, tapping his foot, tapping his watch, shaking his head. Then he mocked yelling at someone. Then he did it again, but instead of yelling, he sighed and left the room.

The drama was meant to be waiting for daddy to get home, but he's late. Does one brood? or does one get engaged in a new activity?

In his "club," which was a social skills course led the Toronto chapter of the Ontario Learning Disabilities Association, they had talked about new ways to deal with the frustration, before it blows up.

All of the other kids in his group were ADHD, but the executive function difficulty was common to his NLD.

In short, in certain situations, his brain overloads. Perhaps that's true of all of us. We all have a melt down point. But NLD kids have a low melt down point. They are struggling with this point much, much more frequently than their neurologically normal brethren.

In fact, the whole day, every day, is a series of coping strategies.

This stop, think, act, review mantra is what the neurologically normal do without thinking. It is a blessing that my son is now increasingly going through these steps consciously.

He often needs to be reminded, but when he is, he usually smiles, steps back, and lets the calmness take hold.

Which is a blessing to everyone.

Recorder

2010-01-26T21:13:00.000-05:00

I know. I haven't written anything here for, like, months, but this post is about a different kind of recorder. The musical kind.

My step-son brought one home from the school over the weekend. His homework was to "practice." Well, this didn't happen.

Instead, there were mini-meltdowns about what a stupid instrument this was.

My wife pointed out, "Fine motor skills issues."

Ya'think?

Today, my wife came home and said she'd had a fortuitous meeting on the bus with another local mom. Another mom of a kid with NLD, this boy a few years older.

My wife: "What did you do about music?"

Mother #2: "Just tell the school he gets an exemption. They don't HAVE TO learn recorder."

My wife had already emailed the principal asking for a meeting with the music teacher. Once you train the main teacher, then you gotta train all the specialty teachers.

But maybe the answer is, this just ins't worth it. So much else is going well right now, let's not push this, which has so little chance of success, and risks derailing other progress.

Tweet, tweet.

Executive Functioning & Marshmellows

2009-11-04T18:45:00.003-05:00

The Toronto Star is running a series on brain functioning.

This article is on a simple test with a marshmellow that apparently explains a lot about future academic success.

The test is about the ability of the child to resist gratification. The child is offered a marshmellow, but he or she can wait 15 minutes, then the reward will be two marshmellows.

Funnily enough, my wife tried this exact test out on our NLD child and his younger sister a couple of years ago. The then four-year-old girl had no trouble waiting. Our NLD kid just said, "Give me the marshmellow. Give it to me now."

Coming To Terms With NLD

2009-10-17T20:00:00.002-04:00

Yet another new link: This one about coming to terms with NLD.

A Super Story

2009-10-17T19:56:00.001-04:00

A super story about a kid with NLD. Click here for link.

Introduction of story posted below:

Raising a child with nonverbal learning disability (NLD) can be challenging; often times, overwhelming. Parents helplessly watch their NLD children struggle with everyday tasks like tying shoelaces and telling time. However, parenting a child with NLD can bring great joy. NLD minds are unique; they view the world with a completely different perspective than everyone else. Finding common creative interests can help you bond with your NLD child.

For my son Indigo and me, it was music. When we heard our favorite band Blue October was touring in our area, we rushed to buy tickets. Their music has become a part of our everyday lives. The lead singer, Justin Furstenfeld, suffers from bipolar disorder and coined their music genre “bipolar art rock.” Justin’s lyrics, matched with a haunting orchestra, “pours out human pain” and transports listeners into the magical, yet tormented world of the bipolar mind. Indigo, who is passionate about educating others about NLD, finds inspiration in Justin’s success.

Indigo and I were fortunate to see Blue October twice this summer. Once at Lupo’s Heartbreak Hotel, and again at the Casino Ballroom in New Hampshire. At Lupo’s, Indigo met Matt Noveskey (bass) before the show. From a distance, I watched as Indigo and Matt chatted for about 15 minutes. We met the band after the concert and got autographs and pictures taken. I was surprised when Matt told me he was impressed with my advocacy efforts. Most fans rave about their favorite songs when given the chance to meet musicians. My son was more inspired to spread the word about our website Diagnosing Parents’ Rights.

Halfway through Blue October's New Hampshire set, Justin spoke to the crowd. He said he had never seen anything like it. He said there was a fan in the crowd who knew every word to every song. He asked Indigo his name and invited him onstage to sing with the band.

Auditory Processing Disorder and NLD

2009-10-17T19:39:00.001-04:00

I have no idea what this means, but ...

Auditory Processing Disorder in Children Diagnosed With Nonverbal Learning Disability

PURPOSE: To determine whether children with a nonverbal learning disability (NVLD) have a higher incidence of auditory processing disorder (APD), especially in the tolerance-fading memory type of APD, and what associations could be found between performance on neuropsychological, intellectual, memory, and academic measures and APD.

METHOD: Eighteen children with NVLD ranging in age from 6 to 18 years received a central auditory processing test battery to determine incidence and subtype of APD. Psychological measures for assessment of NVLD included the Wechsler Scales, Wide Range Assessment of Memory and Learning, and Wechsler Individual Achievement Test. Neuropsychological measures included the Category Test, Trails A and B, the Tactual Performance Test, Grooved Pegs, and the Speech Sounds Perception Test. Neuropsychological test scores of the NVLD+APD and NVLD groups were compared using analysis of covariance procedures, with Verbal IQ and Performance IQ as covariates.

RESULTS: Sixty-one percent of the children were diagnosed with APD, primarily in the tolerance-fading memory subtype. The group of children with APD and NVLD had significantly lower scores on Verbal IQ, Digit Span, Sentence Memory, Block Design, and Speech Sounds Perception than children without APD. An ancillary finding was that the incidence of attention deficit/hyperactivity disorder was significantly higher in children with NVLD (with and without APD) than in the general population.

CONCLUSION: The results indicate that children with NVLD are at risk for APD and that there are several indicators on neuropsychological assessment suggestive of APD. Collaborative, interdisciplinary evaluation of children with learning disorders is needed in order to provide effective therapeutic interventions.

NLD Mountains

2009-10-17T19:29:00.001-04:00

Another link: Article on issues people with NLD need assistance overcoming.

You Are Not Alone

2009-10-17T19:21:00.003-04:00

One of the clear reasons I started this blog was to help clarify any confusion about what NLD was and possibly offer advice about how to sort out the school system in Ontario.

I've come across quite a bit of useful information and tried to link to it from here.

Google sends me links from time to time.

It sent me this one - a blog from a teenager in B.C. with NLD.

I just sent her a comment saying she's not alone. That's a horrible feeling that no one should have to suffer. I hope she heeds it.

Peace.

e-book about NLD

2009-10-17T19:08:00.001-04:00

Here's a new link I found: an e-book, etc., about NLD.

Training the Teachers

2009-09-29T16:57:00.002-04:00

Parents of LD kids, I've reconfirmed for myself this past month, must be the teachers to the teachers.

Our boy started grade four this month, and he has a lovely teacher ... who's about two years out of teacher's college and hasn't a clue about NLD.

In Ontario, the provincial cap on class size ends after grade three, so the classroom has, I think, 34 students.

The teacher placed our boy in the back row. On day two, we were in the classroom advising her to place him directly in front of her. Thankfully, she did.

Transition is a struggle for our nine-year-old at the best of times, and transitioning back to school (which he avowedly hates) is probably the toughest transition of all.

However, we met with his teacher in week two ... and have established a good rapport so far. She also seems "trainable," which isn't something I would have understood was a necessary quality in a teacher.

But, believe me, it is!

I mean that in the best possible way, really. Two years ago, we had no idea what NLD was. It's important for us to remember that.

Our job is to help others understand what NLD means, how it affects our son, how they can use that knowledge to help him. But also, for teachers, to help them simply do their job.

I wrote the teacher a note saying our son will make her a better teacher. What I meant was, if you can figure out how to get through to him ... that skill will pay heavenly dividends through the rest of your career.

So, good luck to teachers, everywhere. I'm not saying the job isn't hard.

It's going to be a challenge, believe me, we know.

But the rewards are terrific ... and failure isn't an option.

Dating NLD

2009-08-25T23:31:00.003-04:00

I came across this web post, which includes a number of comments from folks who know NLD adults, and it struck me as interesting.

Dating issues are a long way off for our NLD kid, but .... it's an interesting perspective and some of the below is illuminating, so I'm sharing it.

The premise of the post is: this girl met a guy; he said he has NLD; she wants to know what the means for them going forward. Other people responded, including a father of a girl with NLD who said:

My adult daughter has NVLD and currently lives at home. NVLD impairs her in some ways, yet she is an especially lovely and lovable person... I don't say that just because she is my daughter... Mature adults who take time to know her find her an especially kind, supportive and loyal friend who brings honesty and integrity to her relationships, as well as good sense.

Some people with NVLD are able get a full education, to support themselves, live on their own and be pretty self-sufficient. Others are more impaired and may need to be on disability. And there are many places in-between. I have a friend who married a man w/ NVLD. She told me she was drawn to his very sweet persona. That seems to be a hallmark of people w/ NVLD... several therapists and folks who work w/ NVLD adults attest to that. People with NVLD are generally honest, sometimes to a fault, fair-minded, and loving. They have difficulty with nonverbal communication... my daughter often asks me after we're in a social situation what was going on. What did someone mean when they said this or that, or did something that everyone else in the conversation understood, b/c of nonverbal cues... ex. tone of voice, gestures, or something inherent in the situation... that she just didn't pick up on.

Then there was someone who added quite a list:

What NLD means in the context of your potential guyfriend depends on who diagnosed him, for what reason, how long he's had the diagnosis, and how severe it is. Based on your mention of his social issues, he's probably going to be fairly similar to someone with AS, but it's possible the LD part will be more prominent.

Some possible examples of difficulties to expect. Everyone is different, so not all of these will apply. Don't get freaked out by the length of this list. All of this together can sound worse than it actually is.

Spatial stuff:

He may bump into or trip over things constantly: furniture, doors, small animals, anything within a 5-foot radius of the body. Flat surfaces can be tripped over.
He may not drive a car because he finds negotiating space and time at high speeds difficult.
He might be slow walking down the stairs or getting on an escalator.
He may be hopeless at mini-golf, frisbee, baseball, dancing.
He may not enjoy many video games.
Things requiring organizational skills, especially spatial ones, may be difficult. He might find it oddly hard to load/unload a dishwasher, to clean a messy room, or to keep a clean one organized. (No jokes about slobby guys — I'm being serious.)
He may get lost in his own neighborhood, or have difficulty reading maps. He may find it hard to get all the things he needs in a megasupermarket with a complicated layout.

He may have difficulty estimating quantities or comparing amounts visually. Don't be surprised if you ask him about how many people were at a party he went to and he looks baffled, or if you call him to ask how much milk is left in the fridge and he's unable to guess how much is in the jug even though he's staring right at it.

Other stuff:

He might find it difficult to break down and organize a large project, like writing an essay.
He might lose things chronically.
He may have terrible handwriting or avoid writing things down because he finds handwriting difficult or slow. Dysgraphia is the term for marked difficulty in fluent handwriting.
He may have a lot of difficulty with mathematical concepts beyond basic arithmetic.
He may find it difficult to keep track of time, to estimate how long something will take, or to be punctual.
He might have problems reading facial expressions and body language; he may misinterpret social interactions, or not recognize "obvious" nonverbal signals that you're quietly angry about something. He may not always recognize sarcasm.
He may be more literal-minded than average. "How many people showed up to the Hendersons' party?" "I don't know, I didn't count them." "But about how many?" "I told you, I didn't count them! How am I supposed to know?"
He may be somewhat more gullible than average.
Similarly, he may be a heavy and fast reader with an excellent factual recall but without taking away some of the depth, greater point, or hidden meaning of the text. He may have trouble keeping track of the plot of a book or movie.
He may have associated disorders like [central] auditory processing disorder (CAPD/APD), and have trouble following conversations over the phone, or following dialogue in a movie unless the subtitles are on. He may forget or misremember instructions given to him out loud and may need to have them given to him on a list.
He may have sensory difficulties; he may be unable to use touch to construct a mental map of something, he may be painfully sensitive to certain types of touch and sound.
He may find it difficult to take and organize notes as a student in a lecture class.There are also sometimes enhancements of verbal/auditory abilities that go along with NLD:
He might be a quick reader, and find it effortless to get through a novel in a couple days, or five magazines in one evening.
He may have an unusually good memory for facts and factual details.
He may notice small details that others ignore.
He may be a very good writer or have an extensive vocabulary. He may be an excellent proofreader of written work.
He is likely to be an excellent speller.
He may have learned to speak or read very early as a child.
He may have an unusually good auditory memory (strange as it sounds, this can even go along with APD). He may remember song melodies or words after only a few listens or may be able to recite long lengths of dialogue from a lot of movies he likes.
He may have a serious love of music.
He may be more trusting, more honest, and more open than average.

Anyway. I'm sure you've already done this, but the best one-site resource right now for NLD is NLDline (has some articles on NLD in adults and on AS vs. NLD), while for AS I suggest OASIS and maybe WrongPlanet.

Superb Thespian

2009-08-25T23:25:00.002-04:00

I just wanted to add, given what I'd written below about our son's anxiety about starting his drama camp, that last Friday he put on a performance with his group in front of an audience that included two sets of grandparents, his sister, mother, father and step-father (me) and blew them all away.

The grandparents were particularly awestruck. They'd seen him overwhelmed by fear many-a-time, but on stage he was super-confident and amazing. Clearly enjoying himself and full of good humour and mischiveous joy.

Way to go, dude!

Upon reflection, I wondered at his transformation. His fear is not performance anxiety, per se. It is uncertainty anxiety. And the drama camp is clearly good at what they do. They rehearse and prepare the kids to understand what to expect.

That is exactly what NLD kids need most.

He got it, and he stood solid in his confidence.

A lesson for all of us. Many lessons, probably.

Wasp Killer: Qu'est que c'est?

2009-08-11T22:06:00.012-04:00

Last weekend, I picked up my nine-year-old step-son from his psychologist. When they came out, she said that he had done something very brave while they were together. He'd killed a wasp. It had come into the office, and he had killed it.

Rolled over it with a chair, he said. Until it was just twitching.

The doctor said that my step-son had confessed to having fastasies about killing wasps. This didn't surprise me. They make him highly anxious. He prefers to stay indoors, as a result.

Yes, the doctor said. She named him. She said he had lots of ....

Issues, he said.

Courage, she said.

I told this story to my wife when I got home. It seemed to exemplify something important. The doctor had wanted to boost his self-confidence, which she frequently makes a point of doing. But he had instead reminded us of why we were there in the first place.

Changing his inner narrative from anxiety to confidence, fear to courage is a constant struggle.

Two days later, he went off to drama camp, but not before facing another crisis of confidence.

He had gone last year - and enjoyed it a lot. So we weren't so concerned about preparing him for this year's camp. But he woke up not wanting to go.

What should we do? my wife asked. We discussed it. We remembered the wasp story. We needed to remind him that he was brave and courageous and could do anything, if he pressed through his anxieties.

My wife told he was brave and courageous and reminded him of other things he had done that he hadn't thought he could do.

He said, "I hate your stupid encouragements."

However, he went - and has had a great week so far.

*

I was mulling over the above, when I saw a story in The Globe and Mail about Asperger's Syndrome:

Asperger's Syndrome, a disorder in the autism spectrum first identified in 1944 by an Austrian pediatrician, Hans Asperger, has become a popular dramatic plot device in television shows such as House, Bones, Law & Order and Degrassi: The Next Generation. It defined the fascinating profile of the literary protagonists in Mark Haddon's 2003 award-winning novel, The Curious Incident of the Dog in the Night-time, and in Stieg Larsson's 2008 posthumous work, The Girl with the Dragon Tattoo.

Now, it's getting a starring role on the silver screen in the movie Adam, released in Canada last Friday. The film's central character is played by Hugh Dancy, the rising British star, who likely saw the profile of a character with Asperger's as a creative, career-defining challenge. With his obsessive, esoteric interests and inadvertent social faux pas, Adam tries to forge a romantic relationship with a new tenant in his Manhattan building - Beth, played by Rose Byrne. The movie is a romantic comedy of sorts.

Adam's affliction, which involves an inability to make eye contact, understand what others are thinking or grasp the concept of socially inappropriate questions or behaviour, is often played for laughs. Early on in their friendship, Adam awkwardly asks Beth if she felt the same sexual excitement he did when they were sitting on a park bench.

What interested me most was the following quote from Margot Nelles, executive director of the Asperger's Society of Ontario:

"There is a tendency to beautify the challenges," says Ms. Nelles, who consulted on Degrassi last summer when writers planned to introduce a character with Asperger's into the teen drama. The reality is that while some achieve success - one of the criteria for a diagnosis is high IQ - the majority suffer from debilitating problems that leave them unable to function effectively in society.

"It's like being dropped in the middle of rural China without a guidebook or a language book, and you go from home to home and feel that somehow you have insulted everyone," she explains.

"They have trouble with the script of life. And they learn from an early age that they are different. They don't know why, so there are major self-esteem issues and self-doubt. And once the bucket starts to fill up with negative social experiences, if intervention isn't made, they self-impose isolation, because it is easier to be alone than to be rejected."

Exactly!

*

Perhaps here's the place to point out that NLD and Asperger's are often linked, in approaches to intervention. See for example:

Helping a Child with Nonverbal Learning Disorder or Asperger's Disorder (2nd edition) by Kathryn Stewart (2007)

*

So it was pleasing to see an article in Metro (pdf, see p22) about how the University of Toronto's accessibility services assist post-secondary students with learning disabilities:

Adina Burden, student co-ordinator of the program, says getting faculty to understand the importance of dealing with learning disabilities in the classroom often requires a shift in attitudes.

"We call them learning disabilities but I'd really call them lerning differences. I truly believe these students have the ability to be successful. They're very bright, there are just different ways they learn," Burden said.

[Notice how it's the faculty who need to do the shift in attitude.]

From the U of T site:

The role of Accessibility Services is to facilitate the inclusion of students with disabilities into all aspects of university life. Our focus is on skills development, especially in the areas of self-advocacy and academic skills. Services are provided to students with a documented disability. ...

Services provided include:

alternative test & examination arrangements
notetaking services
sign language interpreters
adaptive equipment & assistive devices
alternative format for printed materials
information & resource materials on health conditions & disability related issues

liaison with academic & administrative units within the University & with off-campus agencies.

Finally, to underscore the imporance of advocacy (self and otherwise), here's point #7 of a list of what parents can do to help students succeed (written by a teacher):

7. If your child has academic problems, you cannot ever relax. Inform the school. Request testing. Be prepared for triage with a long list of recommended tutors and learning centres. Unfortunately, there's no Tide to Go to magically erase academic problems. Doing nothing is not an option. Be an advocate for your child.

NLD & Executive Function

2009-08-08T22:38:00.003-04:00

From time to time, Google sends me links to site of interest, related to NLD.

Today I received notice about a workshop in September 2009 on NLD and Executive Functioning.

The only problem ... it's in the Phillipines.

It's a global google world!

The "Real" LD

2009-08-08T18:49:00.008-04:00

The New York Times published a series of articles in their "Mother Blog" on autism (not an learning disability, per se, but the issues raised in the articles are highly transferable).

The articles were titled:

The Stress of Autism (July 14, 2009)
The Unvarnished Reality of Autism (July 22, 2009)
Autism from the Inside Out (July 22, 2009)
What is the "Real" Autism? (July 30, 2009)

The articles confirm that there is vast disagreement on what it's like to have autism, parent an autistic child, assist autistic children, etc. ... As one writer notes, "When you know one person with autism, you know one person with autism." The condition manifests in different people differently, as does life generally, which ought to be obvious enough, though those of us trying to parent kids with non-neurologically normal approaches to the world tend to reach for generalizations in order to find some sense of comfort, understanding and hope.

Which is maybe why I was most struck by the article, "Austism from the Inside Out," written by Sarah, an adult living with autism. Her blog is http://autisticcats.blogspot.com/.

Sarah quote from an essay by Jim Sinclair, titled "Don't Mourn for Us." Here's how it starts:

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

I asked my wife about this. She said she wasn't mourning a child she hadn't had. When she mourned, she was sad for the struggles her NLD child faced ... and would face, forever. She saw the challenges he faced, saw the pain he often felt, imagined the future difficulties he would face, wished that these were things he'd never had to deal with.

But he did, and so, she said, it was her challenge to help provide him with the tools and other assistance to manage his challenges and be a succesful human being, just like any other child.

I've heard it said, too, that if you've met one person with NLD, you've met one person with NLD.

I have read some books on NLD, but in these books I have only seen fragments on my step-son. He is lovely, sensitive, anxiety-ridden, brave, confused, articulate, imaginative, controlling, difficult, caring, soft-hearted, bossy. Sometimes, frankly, he can take me to the edge of my sanity, but as I've said before I know this is my problem, not his.

One of my hopes for him, is that he is one day as articulate as Sarah:

Please, consider that autistic people read blogs and have feelings as well. Your blog entry claims to show “the unvarnished reality of autism,” but the feelings and perceptions of actual autistic people are sadly missing from your account. We need to stop casting blame and citing “autism” (autistic people) as the cause for parents’ nightmares, and start working on constructive ways in which autistic people can feel more comfortable in the world.

Amen to that!

LD Workshops

2009-08-08T18:27:00.006-04:00

Some workshops available from the Learning Disabilities Association of Ontario, details here:

Workshops Available

Workshop 1: Organizing the Disorganized Learner
Workshop 2: Preparing for the IEP/IPRC Process
Workshop 3: Current Treatment Options for AD(H)D – Children and Youth
Workshop 4: How to Help Children & Youth with LD Deal with Criticism
Workshop 5: Understanding the New Social Networking World: How it Impacts the LD Learner
Workshop 6: Dealing with Difficult Behaviours
Workshop 7: Nutrition and Learning Disabilities: The Correlation
Workshop 8: The Emotional Impact of Learning Disorders

Also:

Parents support workshops, details here.
Social skills and socialization for kids.

Here's an overview of the social skills workshop:

For many children and adolescents with learning disabilities and Attention Deficit Hyperactivity Disorder, interacting and socializing with peers can present an ongoing struggle.

In general, the ability to understand social interactions, read facial expressions, perceive and express emotions, and interpret language's more subtle meanings is acquired intuitively at an early age. Those with learning disabilities, however, sometimes need help in both developing and understanding these social skills. And as they learn, they also need a safe and supportive place where they can practice these skills.

The Learning Disabilities Association Toronto District provides a specialized program to meet the needs of these children and adolescents.

This program builds positive social relationships where self-esteem and self-confidence can develop appropriately.

LDATD's Social Skills and Socialization Programs are designed to provide the opportunity for developing important and positive peer relationships.

Understanding and Helping Individuals with NLD

2009-07-28T19:14:00.002-04:00

Nothing new in this article, but it's meant to be helpful, and it might just be: Understanding and Helping Individuals with NLD.

Article is by Stanley Shura, who has NLD.

NLD at summer camp

2009-07-22T16:22:00.002-04:00

This story from Pennsylvania is about a camp for kids with high functioning autism. There's reference to a 15-year-old with NLD near the bottom of the article.

*

Kids can express themselves through camp

By: Rachel Canelli

As someone sits down across from him and asks a question about food, Mitchell Reinecker leans in and attempts to make eye contact when he answers.

While his legs nervously swivel his chair from side to side and his waving hands help explain what he’s saying, the 14-year-old tries to remember not to dominate the discussion by talking only about himself.

In school, such a chitchat game would intimidate Mitchell, who has a hard time making conversation - but not at Expressions Day Camp.

Mitchell doesn’t have to worry about being thought weird when he’s at the six-week summer program at George School in Middletown. This camp is for preschoolers through teenagers with high-functioning autism.

Besides the comfort of having young adult counselors to coax and encourage with a smile, he knows that whoever sits across from him will more than understand just how hard it is to make the effort to socialize.

“School can be kind of tough,” said Mitchell, who’ll be a ninth-grader at the Benjamin Franklin Freshman Academy in Bristol Township this fall. “The other kids don’t appreciate me because I’m not good at holding up a conversation, or keeping it going. Some people just don’t understand.”

Newtown social worker Stephanie DeSouza did understand. That’s why she started Expressions, run by Camp Concepts LLC, three years ago.

“A lot of them just don’t have social graces,” she said. “They just say whatever’s on their mind without filtering. For many who suffer from anxiety, mainstream camps can be too overwhelming. This offers the opportunity for them to excel, socialize and gain self-confidence.”

Dozens of parents from nearby Bucks, Montgomery and Philadelphia counties and places as far away as New York, Wyoming and Florida pay $525 a week for their kids to learn how to handle money at the mall, how to order and make lunch, and how to make conversation, among other skills.

The parents get a form detailing their child’s progress, and the campers get prize-driven participation in arts, crafts, computer study, drama, karate and swimming, organizers said.
The program began with roughly 30 kids attending for about four weeks. It has grown to more than 50, with kids as young as 4 and 5 years old and as old as high school age. This is the first year the camp is catering to teenagers, said DeSouza.

“The kids who started three years ago are getting older,” she said. “We work on how to interact with the opposite sex, hygiene and Internet safety.”

Mitchell said the camp puts him in a spot to realize a better way to communicate.

That’s part of the reason mom Kathy Grubelic drives her 15-year-old daughter Tina 50 minutes each way from Worcester Township in Montgomery County five days a week. Tina has a nonverbal learning disability, which means she doesn’t always get things like sarcasm or body language, said Grubelic.

“We tried a couple other camps, but she just doesn’t fit in and she gets lost easily,” Grubelic said. “By being able to hang out with kids her own age and have that camp experience, she has come out of her shell so much.”

LD Success Story

2009-07-09T19:33:00.001-04:00

I'm sure there are many people who have succeeded despite learning disabilities.

Here's one from today's NY Times, the mayor of San Francisco.

A quote from the story:

He described the practice as “really pathetic.” But it works for him and illustrates a larger point about people with learning disabilities: when a person struggles to learn in conventional ways, he said, you adapt “in ways that can nurture creative solutions.” Doing so can also promote “audacious goals that many would dismiss as irrational.”

NLD Research Papers

2009-07-04T15:28:00.001-04:00

Can't vouch for any of these, but you might find something useful here.

Nonverbal Learning Disabilities

2009-06-26T22:36:00.006-04:00

Below is taken from - link here

Nonverbal Learning Disabilities

Locating consistent, reliable information about nonverbal learning disabilities (often referred to as NLD or NVLD) is a challenge for parents because it has yet to be clearly defined and accepted by many educators and other professionals as a distinct disorder.

Nevertheless, parents often seek information about this often-publicized and somewhat controversial disorder. In this article, we will answer some of the most common questions parents ask about nonverbal learning disabilities.

What is nonverbal learning disability (NLD)? Is it a distinct diagnostic category?

Nonverbal learning disability (NLD) is believed by some to be a neuropsychological disability. Although it has been studied for the past 30 years (by Byron Rourke, Ph.D. and others), it has not yet been included as a diagnostic category in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV TR).

Many characteristics associated with NLD are similar to those that describe other, more "established" disorders, such as Asperger's

Syndrome and specific learning disabilities.

For a professional's perspective on NLD, we turned to Brenda Smith Myles, Ph.D., an associate professor at the University of Kansas and editor of Intervention in School and Clinic, a practitioner-oriented journal designed to provide practical, research-based ideas to educators who work with students with severe learning disabilities and emotional/behavior problems.

Dr. Smith Myles says, "Additional research and better diagnostic tools are required to clearly define the characteristics of NLD and determine whether or not it can be considered a distinct disorder."

For the time being, let's review how this disorder is defined - and how it might apply to your child.

What characteristics are associated with NLD?

NLD is usually defined by a distinct pattern of specific strengths and difficulties.
Individuals thought to have NLD typically demonstrate strengths in the following areas:
Intelligence quotient (IQ) which is typically in the average to above-average range.
Children with NLD tend to have verbal IQ scores that are higher than their performance scores, a factor that distinguishes them from kids with language-based learning disabilities such as dyslexia.
Rote verbal and expressive and receptive language skills, such as the ability to memorize and repeat a great deal of information presented to them in spoken form. They also exhibit early language development.
Auditory processing skills, which entail learning better through hearing information, rather than seeing it (visual processing)
Individuals thought to have NLD generally experience difficulties in several broad categories:

Motor skills, such as graphomotor skills (related to printing and cursive writing), physical coordination, and balance
Complex conceptual skills involved in problem-solving, understanding cause-effect relationships, and seeing the "big picture" versus focusing on details
Visual-spatial-organizational skills, such as visualizing information and understanding spatial relations
Social skills, such as using and understanding nonverbal communication (e.g., gestures, facial expressions), dealing with new information and situations, transitioning between situations, conversation skills, and understanding the nuances of spoken language (e.g., hidden meanings, figurative language)
Activity level: hyperactivity (when younger), and hypoactivity (as they grow older)

For more see link

Research on social skills

2009-06-25T18:37:00.002-04:00

MSU researcher analyzes links between social interaction, autism

[link above, pasted story below]

EAST LANSING, Mich. — A Michigan State University researcher is analyzing brain images of children with autistic spectrum disorders and nonverbal learning disabilities in hopes of understanding why they often struggle with social interaction.

By understanding how a child’s brain processes social information differently, researchers can learn how to intervene at younger ages most effectively, said Margaret Semrud-Clikeman, a professor in the departments of Psychiatry and Psychology and also director of MSU’s Center for Neurodevelopmental Study.

“In recent years, social perception has been understood to be an important factor in learning and long-term mental health outcomes,” she said. “Kids with autistic spectrum disorders or a nonverbal learning disability don’t understand their social world the same way. They may not understand facial expressions or social cues, or they may be awkward in social situations.”

As part of the study, children undergo a morning of testing, including problem solving, vocabulary and visual complex measurements. After a break, children practice on a mock MRI scanner to ensure they are comfortable with the procedure.

They then go to MSU’s Radiology Department, and an image of the child’s brain is obtained while the child views pictures of human faces and videos of social situations often encountered among children. Semrud-Clikeman’s group compares the brain activation that is generated in the children with autistic spectrum disorders or nonverbal learning disabilities compared to a control group.

Families are compensated for their involvement as are members of a control group. The research is funded by a private foundation’s $320,000 gift.

“Things that most kids take for granted, many of these children crave: social acceptance and interaction,” Semrud-Clikeman said. “There are so few resources for parents, and they are often told that no help is available. That’s simply not true.”

In a separate clinical trial, Semund-Clikeman and her group are starting to analyze preliminary results from research looking at why children with attention-deficit hyperactivity disorder respond differently to positive and negative feedback.

“Children with ADHD take more risks,” Semrud-Clikeman said. “What we are seeing from preliminary analysis of brain scans is that children with ADHD are not using their frontal lobes when assessing situations.

“Regardless whether they are being rewarded or being told they were not successful at a task, they are not associating consequences with their actions.”

Semrud-Clikeman hopes the ADHD trial will help drive the interventions that physicians use when working with children with the disability.

“A lot of people may say that these children aren’t motivated, but I don’t believe that,” she said. “It sets up an unfair expectation.”

For details on either study, including how to enroll a child, visit the Center for Neurodevelopmental Study’s Web site at www.psychology.msu.edu/cns.

Bullies

2009-06-11T19:37:00.002-04:00

We've had some recent experience with bullies.

About the only thing I know about children as bullies is that they are usually victims of bullying themselves. Recent experience has tended to bear that out.

I've also heard that Barbara Coloroso is good on bullies.

Her book The Bully, The Bullied and the Bystander (Harper Collins, 2004) is apparently the best on the subject.

I see it in my future.

LDs Explained

2009-05-21T21:51:00.000-04:00

This post is pretty good. It's an explanation of learning disabilities.

Learning Empathy

2009-05-17T10:41:00.002-04:00

You know how you feel the week before Christmas, when the malls are full, and you haven't quite checked off everything on your gift list, and you're uncertain about how all of your family members are going to get along at the big gathering, and you just want everyone to be happy and everything to be perfect and no trouble to befall anyone, but you also know that no such luck is possible. Something will happen. Something unpredictable. And you're not at all confident that you will be able to deal with it well. You know that feeling?

That's how kids with NLD feel all of the time.

I think I got this analogy from Marcia Brown Rubinstien in Raising NLD Superstars. Wherever the analogy came from, it's one I return to frequently. It reminds me of the need to be patient. What might seem simple, is often quite the opposite for a kid with NLD.

In March, we went on vacation with another couple and their son. We had a good time. All went well. But I found myself constantly reevaluating my expectations against the expectations of our NLD eight-year-old. Change in routine is hard for him. A vacation is a major change in routine.

It's not that he was unhappy to be able to run up and down the beach and swim in the pool and do other things one can't do in Toronto in March. It's just that when routine changes, the limits of his ability to adjust his expectations become abundantly clear.

He spent a significant amount of time inside. He spent a fair about of time alone. We recognize these as elements of his coping strategies. Minimize external stimulation. Reduce the number of unpredictable variables.

It can become frustrating for me. Especially when I'm on vacation. I don't want to spend all day inside, trying to get this child to eat something. Anything.

But when you are together 24/7, you either adjust to each other or things can get rapidly and significantly worse. This means, of course, that we adjusted to him (as we nearly always do), because he cannot adjust to us.

Is there any other way to learn empathy?

Yes, it is frustrating to adjust one's thinking so it aligns with the thinking of an NLD child. It is also exhausting. It is like living perpetually in the week before Christmas.

One can only hope to remember: That is how the NLD child lives every day.

He or she doesn't have a choice.

NLD and educators

2009-03-18T14:28:00.003-04:00

A new link with advice for teachers and parents about assisting kids with NLD.

In addition, that page links to this article by Jean Foss: http://www.schoolbehavior.com/conditions_nvld_foss.htm (NONVERBAL LEARNING DISABILITY:HOW TO RECOGNIZE IT AND MINIMIZE ITS EFFECTS).

And the previous page of links on this site.

Portrait of a Learner

2009-03-10T21:21:00.002-04:00

This three-part series by Andrea Gordon appeared in The Toronto Star on March 5, 6, 7, 2009.

The student portrayed in this series is in grade eight. He doesn't have NLD, but his assessment reveals a learning disability. The series is very good at outlining the process of assessment and some of the key struggles parents face interacting with the school system in Toronto to get their kids what they need.

An excellent primer.

I love working with this population

2009-02-06T21:57:00.002-05:00

This past week, my wife and I went to an evening workshop on social skills for kids with learning disabilities. It was an introductory session, two hours long. Not too detailed, but focused on kids with NLD and Aspergers.

The social worker who led the session began by saying, "I love working with this population. These kids are creative, innovative. They think outside the box, because they live outside the box."

It was a reassuring session because we were essentially affirmed that we were on the right track. We learned some things, too. We learned about social stories and were reminded of the importance of modeling behaviour -- in particular, for talking through our thinking processes in front of the kids so they can see (and hear) the problem-solving process.

Easy to do in theory; hard to do in practice. But essential learning for NLD kids.

The session was held at Integra, which also has sessions for kids. Our son is on the waiting list for peer sessions. We have spoken to other parents who have used this service.

This could be a good thing.

One thing that I learned (or if not learned, was reminded of) was the importance of being patient. The social worker mentioned managing expectations to a level that ensures success, and she also mentioned that peers are colleagues, not people of the same age. You need to find appropriate peers for your kids. Age isn't likely to be a primary category.

We have been doing drama school with our kids, which has been a great source of pride and pleasure. It has also provided "permission" for imaginative play. It has provided some good social/peer relationship and self-esteem outside of school, which hasn't always been a pleasant environment.

In general, life is easier this year than last year, but we know we have challenges ahead. This post isn't about the challenges, however. It's about the unique pleasure of living outside the box.

Occupational Therapy

2008-12-09T20:16:00.002-05:00

Last week, I sat in on an occupational therapy assessment session of my eight-year-old step-son. It was an eye-opening experience in a number of ways.

Afterwards, I realized that I'd been thinking about learning disabilities as a "brain thing." There is something neurologically distressed, which can affect emotional capacity, cognitive function and academic results.

But it is now clear to me that my step-son has a physical disability (as well). His struggle with some simple physical tests was illuminating.

I'm surprised, though, at how surprised I was, because I've known all along that "fine motor skills" are something that he can experience trouble with.

The extent of the trouble astonished me.

*

I wrote the following quick summary of what happened:

I sat in on a session at 1:30 pm between XXX and the occupational therapist. The session lasted about half-an-hour.

She did a number of assessment exercises with him: writing, following a point with his eyes (not moving head), touching knees with hands, laying on back in a ball and holding it as long as possible, lying on stomach with arms and legs outstretched and held above ground and holding it as long as possible, copying written material beside him on the desk, copying written material on the wall on the other side of the room.

XXX was exhausted. He said he got up at 5:30 a.m. [though it was really 7:15], and his teacher said he'd been asking about when the OT would happen all day. Clearly he'd been anticipating it. He slumped in his chair. When asked how his hand felt after writing, he said, "It hurts." He yawned and drooped his shoulders.

This was all new to the therapist, who'd seen a very bouncy energetic XXX the first time [that was a morning session].

She didn't know he has NLD. She has access to his school file, and will look into it for background material.

She is now done the assessment and will have a report early in 2009. The report will include a summary of the results of the assessment and a plan for "how to make things easier for XXX at school."

Part of what she was test was muscle development. She asked if XXX often slumped. I said it wasn't uncommon. He seemed to sit up well when he was at the computer, because he had to use a mouse. She noted how he sifted in his chair and swung his feet. She said the movement helped XXX use different muscles as others get tired. I said he uses his skateboard like that. Doesn't ride it, but rocks it back and forth as he watches TV. He also can be jittery, moving around the couch, not sitting still. She said kids often do that to orient themselves in space. Keep moving and touchings to help orient themselves to their enviornment. She said a stabilizer ball is often recommended. It is good for muscle development and the constant movement of the ball helps with the orienting, too.

She thought that teaching XXX cursive writing might be a change to "start over" with his writing. She said his printing habits are probably settled by now (grade three). There's some problems with them, such as he starts his letters at the bottom and draws up, which is apparently inefficient (and one of the reasons he finds writing to be tiring).

She aske XXX how he liked using the Alphasmart and if he thought it was better or about the same as writing. He said, "About the same."

About XXX's tiredness, I told the therapist that it seemed XXX had been anticipating her visit all day. Had maybe woke up early because he was thinking about it. And probably had worn himself out in anticipation, a not uncommon thing, I thought and said.

His printing was much improved, I also told her after looking at the sample. It's getting smaller and neater, but he clearly labours over it and doesn't produce more than a few lines.

At the first session, she'd asked him to make up a story and he wrote two sentences and said he couldn't think of anything more. When she asked him to try again, he added two more words. She said that's not uncommon for kids who have trouble organizing their thoughts.

That's my preliminary report, respectfully submitted.

*

The occupational therapy came about because the school made a referral last March. [This followed much howling about how we were being treated as a family with a newly diagnosed NLD child ... Diagnosed the previous October.]

At the time, we were told there was a waiting list and we'd probably hear back by the end of the calendar year. This turned out to be true.

It may yet turn out to be the most significant intervention yet.

*

Briding the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalyn Varney Whitney (2002) is written by the mother of an NLD child. The author is also an occupational therapist.

I wrote a little about that book in a previous post.

Provincial Auditor Update 2008

2008-12-09T19:41:00.003-05:00

Ontario's provincial auditor has provided a new report on the state of special education in the province.

Find his report here (pdf).

The report's summary states:

While the Ministry of Education (Ministry) has increased special education funding since the 2001/02 school year by 54%, the number of students served increased by only about 5%. Although provincial test results and our audit indicated that progress has been made since our last audit in 2001, there are still a number of areas where practices need to be improved to ensure that the significant funding increases result in continuous improvement in the outcomes for students with special education needs in Ontario.

Some of our more significant observations are as follows:

The proportion of Individual Education Plans (IEPs) in our sample completed by the due date improved from 17% in our 2001 audit to almost 50% in this audit. The availability of information from student information systems has also improved since our last audit, and a number of information system initiatives were under way at the time of our audit. However, the information that school boards currently collect about students with special education needs, how early they are identified, the educational programs provided to them, and the results achieved was not yet sufficient to support effective planning and service delivery, program oversight, and the identification of effective practices.
The IEPs that we examined varied in quality with respect to setting the learning goals and expectations for students with special education needs working toward modified curriculum expectations. The learning goals and learning expectations for numeracy and literacy were generally measurable. However, the goals and expectations for other subjects were often vague. As a result, schools could not measure the gap between the performance of students with special education needs and regular curriculum expectations and assess whether the change in the performance gap between reporting periods was appropriate in the circumstances.
Identification, Placement, and Review Committees (IPRCs) make significant decisions regarding the education of students with special education needs, but do not adequately document the rationale for their decisions and the evidence they relied on. As a result, information that would be of use to IPRCs conducting annual reviews and to teachers in connection with the preparation of IEPs is not available. The lack of detailed information on the proceedings also limits the ability of boards to identify areas for systemic improvement in IPRC procedures.
School boards did not have sufficient evidence to demonstrate compliance with the requirement in Regulation 181/98 of the Education Act to consult with parents in connection with IPRCs and in the preparation of IEPs. We also found that the Ministry’s expectations in this regard were not sufficiently detailed.
The process for formally identifying students with special education needs—including IPRC meetings and professional assessments—is resource intensive. One school board we audited conducted fewer formal assessments to help offset the cost of additional special education teachers. The Ministry needs to compare the contribution to student outcomes made by the formal identification process to that made by additional direct services provided by special education teachers and identify the strategy that results in the greater benefits to students.
The provincial report card is not designed to report on the achievement of the various learning expectations in the IEPs of students who are being assessed against modified and alternative learning expectations, and on the extent to which students with special education needs have met their learning goals. As a result, parents and students were not adequately informed about the performance of students who were being assessed against modified and alternative expectations.
We found examples, particularly at the elementary school level, where report cards discussed the student’s positive attributes but did not provide a candid discussion of the student’s performance relative to expectations. As a result, some parents may not fully understand their child’s rate of progress and areas for improvement.
The required planning form for the transition from secondary school to work, community living, or further education was being completed by schools. However, there was no documentation on whether the actions
noted on the planning form were completed and with what degree of success. There was also no documentation on the work done by schools to manage the transition of students with special education needs from school to school and from elementary to secondary school.
The Ministry does not require that school boards establish procedures to assess the quality of the special education services and supports at their schools and whether the schools complied with legislation, regulations, and policies. None of the school boards we audited had established such procedures.

What Am I Supposed To Do With Him?

2008-11-23T23:43:00.002-05:00

Here's what happened.

I took the four-year-old (neurologically normal) girl tobogganing with her eight-year-old NLD brother.

They went down the hill together. She got off. He lay there, pretending to be dead (I think). Actually, I assume he was obsessed with his own imaginative rendering of the situation. Lost in his head, creating swirls of space creatures and explosions and -- who know what.

The four-year-old grabbed the rope of the toboggan and started pulling. It didn't move.

Exasperated, she looked up at me: "What am I supposed to do with him?"

I thought, "I know exactly how you feel."

I thought, "I have no idea."

I said, "Try kissing him. Maybe that will wake him up."

She did. He didn't.

Finally, I told him he had to get up or we were going home. He got up. Slowly.

I have yet to read any advice about NLD and siblings.

Raising NLD Superstars by Marcia Brown Rubinstein includes some stories about siblings, but not a chapter on sibling relationships.

Does anyone seen anything good on this subject?

My heart broke a little seeing our four-year-old so exasperated. She also finds herself constantly involved in our son's imaginative universe of missles and explosions and you-name-it extreme violence.

This is his experience of reality, but it is not hers. She wants to play with dolls and has an amazing sense of social networks.

Two very different children we are responsible for raising to their full potential.

Help!

Can't / Won't

2008-11-10T21:26:00.005-05:00

Dr. Adam Cox says on page 46 of No Mind Left Behind (Perigee, 2008): "Much of this book is devoted to helping you detangle 'cannot' (not able to achieve) from 'will not' (not trying to achieve)."

I am about halfway through this book, and I am exhausted. Sorting out "cannot" from "will not" is one of the biggest conundrums of having an NLD child. The book is helpful. It is good. And it is not enough.

Here is more from the book:

When considering special needs children, executive dysfunction may be either the cause or the effect of disability. Learning to regulate one's emotions, apply reason through goal-directed thinking, slow down long enough to make good decisions, or act insightfully with others can be quite difficult for kids whose cognitive processing indiosyncrisies make those skills far less automatic.

Yesterday, we reorganized the bedroom of our four-year-old. Completely reorganized her room when she was out with her daddy (I'm her step-father). We both commented that we would NEVER reorganize our eight-year-old son's room. With his NLD, he would very likely meltdown from the sudden, unexpected change. Our daughter smiled and quickly began exploring her "new" room.

Our son took six weeks to change into a new pair of running shoes. His old pair was getting increasingly ratty. He kept saying, "I will start wearing the new pair tomorrow." He never did. My wife's patience finally wore thin: "You don't need to like it; you just need to do it." There were tears. There was yelling. He put on the new shoes. They were the same style and same size as the old ones. Processing the change was too much for him.

He did it because he was pressed into it. He couldn't find the self-motivation to do it. No amount of coaxing succeeded in persuading him that wearing new shoes would be "okay." The thought of change simply produced an anxiety that he couldn't resolve on his own.

The stick won out over the carrot.

The result was the right one, but I must admit to my own anxiety about the strategy. I want a world in which the carrot wins. Our neurological-normal four-year-old responds well to the carrot. Though she also responds well to the occasional "stern voice," I must admit.

Some of these parenting strategy issues obviously go beyond "how to parent an NLD child." I'm not going to go off on that tangent. All I want to indicate here is the struggle to know what your child CANNOT do and what s/he WON'T do.

If s/he can't do something, no amount of persuasion will reverse that. Neither strategy will unlock "inner motivation": Carrot or stick. (Though the new shoes will get put on, if you force the issue. Sometimes it's all that can be done.)

If s/he won't do something, then you still have a chance to find the inner motivation that will propel the child forward.

If the child can't do something ... what then?

Our eight-year-old NLD son can be shockingly dependent. As a six-year-old he would prefer to pee into a bottle, rather than go upstairs to the bathroom alone. He needs to be around other people (preferably an adult he trusts) just about always. That is, he won't play in his room by himself. Or is that he CAN'T play in his room alone by himself?

He can also be shockingly narcissistic, bossy, and otherwise socially incompetent, while also being selfless, truth-bound, rule-bound, innocent, naive, and possessed by powerful phobias (elevators, boats, bugs).

Dr. Adam Cox sent out an email newsletter today (available at his website). The subject was how to motivate boys. He wrote:

If I could suggest the one thing that any of us could do today to improve a boy's motivation it would be to orient him to the notion that his primary job is not to create success, but to discover his destiny.

I think this is brilliant -- and earnest -- and maybe even obvious. It is also, I think, irrelevant to our eight-year-old. Our challenge as his parents, I've concluded, is not to help him find his inner drive or destiny. It is to be there to push him when he needs to be pushed. To put on a new pair of shoes. To help him understand why his friends find him difficult to deal with sometimes. To help him understand why we cannot play with him whenever he wants (all the time).

His disability has made him incapable of doing many neurologically normal things. Taking initiative and exploring new environments "instinctively" is one of those things.

We worry constantly about how to help him become a self-sufficient adult. We have more than a decade before we know how well we have been successful in that task. And we have many challenges to face in the interim.

Overcoming (or coming to a better understanding of) can't/won't ... is just one of them.

*

A couple new links:

That novel is Inside Out Girl (Harper, 2008) by Tish Cohen. Here's an interview with the author.

An except from that interview:

TSP: Nonverbal learning disability, or NLD, is not a commonly known disability. One of the wonderful aspects of reading good books is that they make us wiser, but also give us empathy hand-in-hand with that wisdom. For those who have yet to read Inside Out Girl, educate us a little about NLD and how you came to choose this particular disability for the main character in your book—the inspiring Rachel Berman, who really does have her insides out in full vulnerability to the often harsh world around her.

TISH: My close friend is a family therapist and once told me her favorite clients are the children with an Asperger’s-like condition called NLD (or Non-verbal Learning Disorder) because of their loving dispositions—naiveté, and utter inability to connect with other children. She loves that they talk too close, constantly knock things over, say the wrong thing, and still get lost on the way to the restroom in an office they’ve been coming to for five years. Often they can’t walk up the stairs and talk at the same time, their clothes are inside out and their lack of motor skills means they can’t brush their own teeth. If you tell them to jump in a lake, they probably will. Frustrating, to say the least.

But they will hug you until you weep. They not only wear their hearts on their sleeves, but on a neon sign above their heads. They see nothing wrong with marching straight up to the meanest clique in middle grade or the bully everyone fears and wrapping themselves around them in a full-body hug. And they cannot for the life of them see why they’re rejected.

I thought about what it would mean to have a child with NLD and the joy and pain that would entail. Then I wondered what it would be like to be a single parent like Rachel, with so much on her plate already, to consider bringing a child with such a condition into her life and family. It seemed a fascinating scenario.

Meltdowns - Advice from Mom

2008-09-18T21:15:00.004-04:00

Practical solutions to addressing and managing meltdowns for a child with NLD from Mom.

Michael says:

Meltdowns seem to come out of nowhere. They seem to be triggered by minute events. Or nothing at all. They are unpredictable. Irrational. Traditional, behaviour-based interventions (e.g., time outs, rewards) have no effect. How do you stop (or minimize) these outbursts? How do you restore sanity to your child’s life and your own?

Mom says:

Over the years with my son, I have come to realize that fending off meltdowns is virtually impossible before the age of, say, 7 years old. Really, they are bound to happen to your child if he or she does not comprehend the world around them and feels disconnected.

I came to realize [through a good child psychologist] that meltdowns were my son’s way of dealing with the stress, and communicating it to me. Like a baby crying for milk or sleep or attention. It is a sign of trust that you will help out. Just as with your baby, the call must be answered. You can provide the comfort he needs to see it through. And so you must.

Having tried many methods with our son to alleviate the stress of meltdown, I find that there are several ways to deal with the trauma.

First, breaking down the problem into small steps and talking them through helps.

Here is one scenario that may be familiar to you: 5 year old NLD child [pre-diagnosis]. Birthday party. Child could not make decision to pick a present. Child did not want to make a card. Brand new location for party where he has never been before. Large group of kids [most blithely dropped off by parents]. Child clings and will not go into party alone. Cries and hides. Will NOT participate in any way. Mom thinks “What am I doing wrong?”

Stay with the child. Allow them see you think it is ok this is all new - and that you are there for them.
Verbally explain the birthday party in steps – they will play hockey first, then eat cake, then open presents, then get loot bag and go home. This might not seem to help him overtly. He probably won’t stop clinging, but he knows you are there to help him interpret the situation.
Ignore the looks of other parents. Who cares what they think?
Ignore the feeling in your gut which says, why is my child not enjoying this fun party? Well, because he is not. And there are no rules anywhere which say he should.

Michael says:

Begin by understanding that NLD kids meltdown as an act of self-defense. NLD kids meltdown because they are overwhelmed. You may feel manipulated (and other children do meltdown to manipulate you), but your NLD child is not trying to control you. He or she is asking for help. The meltdowns are neurological events. Your child’s brain is overloaded. He or she is in distress. This is why behavioural interventions don’t work; the meltdowns are not behaviour-based.

Mom says:

Second, when you child has NLD, your job is to make sure they can trust you to let them be themselves. As well, somehow, over their life you will have to try provide them with a bridge to the rest of the world, acting as interpreter when people reach your side, or when he or she reaches the rest of the world.

Bridges are by their nature walked on. Get used to it. It is now your job, and exhausting and stressful and worrisome, and sometimes heartbreaking as it is, it will well be worth it when your older child can talk to you about his or her feelings.

When they can say “I am frustrated” rather than kicking you or throwing furniture, you know it is working.

When they can advocate for themselves – for example moving from “I’m thirsty” to “I am going to get myself a drink” then you know it is working.

When the affection they are universally known for with others returns to you and you are hugged and loved and needed for no other reasons than they want to hug and love, then you know it is working.

Michael says:

Last fall (before our son’s diagnosis), we had a conflict with his teacher because she was keeping him in from recess to “incentivize” him to finish his work. A year earlier, his previous teacher had identified a “motivational problem.”We knew something was up, but didn’t know what. We could see he struggled at school. Was it lack of motivation? Was it something else?

Mom says:

Final point. For years we wondered how to motivate my son to accomplish basic tasks. Tie shoes (still doesn’t happen), get your clothes on by yourself (buttons still require help) hand in your homework (a work in progress) eat your meal (sometimes), sit still (again, sometimes)….and the list goes on.

Don’t punish the child for being overwhelmed. Teach him how to prepare himself in advance as much as possible. This will require you to think in advance of most things, and have verbal cues and reassurances lined up – because you will need them.

Punishing our son not only didn’t work, it mad matters worse- he felt alienated, we felt alienated from him, and then he became depressed to the point that he sat in the assessing psychologists office and said “I wish I didn’t exist.” He was 7 years old.

Now I know that my son has to be taught how to teach himself, and repeatedly, until somehow, he has gotten used to it, has absorbed it or included it in his daily routine. Some things stick – like bringing his dishes to the kitchen from dinner, turning off the bathroom light, and remembering his “indoor” shoes for school. Others, well, every day brings some new challenge for us all, and for NLD, it is the mundane details which can provide the same “new” challenge every day.

And to end here are some of the strategies we use, frequently, to help our son and frankly, all of us.

When a meltdown happens - hug [if you are allowed that close] or sit close by and verbally reassure that you are there [if you are not].
Say nothing – or if you must talk, say soothing things – singing helps too. Rationalizing is futile and often counterproductive.
Teach deep breathing. Often when in distress, we humans tend to shallow breathe, and this really does not help get the oxygen to the brain. Taking deep breaths [in through the nose and out through the mouth] also focuses the mind on something else. Do it with them.
Provide appropriate outlets, punching a pillow [although I read somewhere this is not really appropriate since it is not productive – I say, who cares, the rage has to out somewhere….better a pillow than your child self hurting, or hurting someone or something else say - youngest child, the wall, or yourself]; yelling into a pillow, scribbling on paper, running, kicking a ball, etc.
Model the behaviour you want them to emulate, such as talking out your feelings – “Wow, this is really making me angry, or frustrated” or when required, taking a self-imposed “time out” from the situation to calm down. You have feelings too.
Provide boundaries verbally. It is ok to be angry – but the rules are…for example our three are:

No hurting yourself
No hurting others
No breaking things

REPEAT as often as required. Eventually they do internalize these.

When the meltdown is over:

Provide affection and understanding. They are going to be ok, and that big emotions are scary. You get it.
Provide calming music or a story via headphones to allow the child to enter into a private auditory world. Sometimes it is all too much.
Provide them with a quiet activity or let them choose something they know that makes them feel good. Time to self-soothe.
Parents: have a glass of wine or a cup of tea, take a walk, call a friend who gets it, go to bed early, read a trashy magazine. Take care of yourself.

Meltdowns

2008-09-12T18:49:00.005-04:00

The key point of this post is, addressing and managing meltdowns is often the front line of living with a child with NLD.

How do you know your child has NLD?

The most common path to diagnosis seems to lead from parents’ attempts to understand why their child is having so many uncontrollable, inconsolable emotional meltdowns.

These meltdowns seem to come out of nowhere. They seem to be triggered by minute events. Or nothing at all. They are unpredictable. Irrational. Traditional, behaviour-based interventions (e.g., time outs, rewards) have no effect.

How do you stop (or minimize) these outbursts? How do you restore sanity to your child’s life and your own?

Begin by understanding that NLD kids meltdown as an act of self-defense. NLD kids meltdown because they are overwhelmed.

You may feel manipulated (and other children do meltdown to manipulate you), but your NLD child is not trying to control you. He or she is asking for help.

The meltdowns are neurological events. Your child’s brain is overloaded. He or she is in distress. This is why behavioural interventions don’t work; the meltdowns are not behaviour-based.

This last point is likely to set you on a collision course with others, particularly the school.

Last fall (before our son’s diagnosis), we had a conflict with his teacher because she was keeping him in from recess to “incentivize” him to finish his work. A year earlier, his previous teacher had identified a “motivational problem.”

We knew something was up, but didn’t know what. We could see he struggled at school. Was it lack of motivation? Was it something else?

Being kept in from recess caused him high distress. We asked the teacher to stop that practice immediately. She argued that she needed to treat all of her students the same. Only after we got the NLD diagnosis did she confront the truth and cease and desist.

Students are not the same and shouldn’t be treated identically. An anecdote from Rick Lavoie’s excellent article on advocating for LD kids illustrates this point well:

I recall a teacher once entering my office and saying, "I have kept Joshua in for recess for 15 days in a row and he STILL isn't doing his math homework!" Well, let's circle the 'slow learner' in this picture… IT AIN'T WORKING!!!

Not only doesn’t it work, it makes matters worse. The teacher is punishing the child for being overwhelmed. The child doesn’t have a motivational problem, he or she has an information processing problem.

The child knows he or she can’t perform the required task, and also knows that there will be a punishment for being unable to perform the task. Increased emotional stress, including lower self-esteem, high feelings of anger and even depression are the logical results. It’s a downward spiral that parents cannot stop too soon.

For NLD kids, you need to change your way of thinking. To predict, manage and prevent the most extreme meltdowns, you need to understand where the stress is coming from.

The unpredictable world.

And yet, what is life but a series of unpredictable events?

While NLD is a category of learning disability, it is really a life-long challenge. NLD is characterized by a difficulty adapting to change, because change requires processing new information. Too much information and the brain melts.

You can make your child’s life more comfortable by reducing unpredictability.

The best support, however, is helping your child to prepare for, adapt to, and manage change and uncertainty. This is a never-ending process. And will require an endless series of attempts, strategies and interventions.

A final, formal diagnosis of NLD will include a much broader analysis of your child than why he or she is having meltdowns. We are learning that “motivation problems” can also have a different name: struggles with executive functioning.

That’s a topic for another time.

Recommended reading:

Raising NLD Superstars: What families with nonverbal learning disabilities need to know about nurturing confident, competent kids by Marcia Brown Rubinstien

This excellent book should be fortifying for parents of NLD kids. Yes, you need to accommodate your NLD child, but your parenting goal is still the same. You need to help this child learn how to function independently and be responsible for his or her own destiny.

I found this book particularly empathetic on meltdowns. And shutdowns.

NLD kids tend to have meltdowns (and be hyperactive) when they are younger. As teenagers, they tend to become hypoactive and have shutdowns. These can be more dangerous than meltdowns, because they’re not as obvious. The child may stop acting out, but internally they are still just as overwhelmed, anxious, angry and depressed. This leads to a sobering fact: NLD teenagers have a higher than normal risk of suicide.

Some New Links

2008-08-18T18:08:00.005-04:00

Here's some links to new information I've come across:

New book about living with NLD
Description of NLD
Helping the Child with Learning Disabilities Find Social Success by Richard Lavoie

The Learning Disabilities Association of Ontario also had an interesting article in their Summer 2008 newsletter on Dr. Adam Cox, specialist in executive function disorder. The article provides a list of four books on executive function:

No Mind Left Behind: Understanding and Fostering Executive Functioning by Adam Cox (2007)
Executive Function in Education: From Theory to Practice by Lynn Meltzer (2007)
The Source for Development of Executive Functions by Gail Richard and Jill Fahy (2005)
Executive Skills in Children and Adolescents: A Practical Guide to Assessment and Intervention by Peg Dawson and Richard Guare (2004)

Teacher, teacher

2008-07-22T21:28:00.003-04:00

If you have read my previous posts on this blog, you know that I have a strong skepticism about the ability of the school system to deliver on its promises – and obligations.

Today I will ponder the imponderable.

Perhaps “the school system” doesn’t exist. Perhaps what we think of as the school system is only a group of individuals working within connected institutions, following certain guidelines and structures, and generally doing the best they can with the limited resources that they’ve got.

On my generous days I can be sympathetic to teachers by thinking in this fashion.

Teachers are on the front line; they are the ones with the biggest responsibility; they are the people who ultimately determine the success of each child within … um, the school system.

Teachers do their best, but sometimes that’s not enough.

Sometimes they don’t know any better. Even the Ministry of Education says so.

The province’s Special Education Transformation Report (May 2006) stated:

More and ongoing professional development is necessary for educators, teachers’ assistants, administrators, associated professionals, and indeed for parents in the best practices and programs for students with special education needs.

(That report was written, in part, by Kathleen Wynne, who is now the province’s Minister of Education.)

Reading the Special Education Transformation Report, I felt a certain vindication. Yes, NLD is confusing, but how come our local school’s response to our son’s diagnosis was so anemic?

Could it be that they just didn’t know any better?

Trying to understand the point of view of the classroom teacher occupied quite a bit of my time this past year.

If a child with a learning disability requires the teacher to change how he presents information to that child, then how well the teacher understands the learning disability affects how well she performs that task.

Seemed logical to me.

So I wrote to the Elementary Teachers’ Federation of Ontario and asked what the federation did to help teachers understand learning disabilities.

I had already gone to the federation’s website and found that their search engine (under “resources”) returned no results for the search terms “learning disabilities” or “NLD.”

The response from the federation’s president is posted below.

Finally, did you know that all teachers in the province are required to have an annual learning plan?

Perhaps you can suggest your local teacher begins this year's learning by reading: “Fighting the Good Fight: How to Advocate for Your Students Without Losing Your Job” by Rick Lavoie.

Lavoie writes to teachers:

Consider: Reflect upon the last time you wrote and Individualized Educational Plan for a student. What was your motivation? Who was your audience? What was your goal? Who were you writing it for? Did you design the document primarily to please the child's parents? To impress your supervisor? To meet your budget? To adhere to school policy? To adjust your workload?

If you answered "yes" to any of those questions, you have violated the primary ethical tenet of our profession: Your fundamental loyalty and commitment must be to the child. His needs should be foremost in your mind… and in your actions and decisions.

Now, if you are able to meet the child's need and simultaneously keep your superiors, colleagues, parents and budgets satisfied—TERRIFIC! But when faced with the choice of serving the child and /or pleasing your other constituencies… you must ALWAYS focus on the needs of the child. It is as simple as that.

Emphasis added

*

April 2008

Mr. Bryson,

Your e-mail asking what resources we provide to our members to help them understand learning disabilities was referred to my attention.

I can assure you that our classroom teachers work tirelessly to meet the needs of all their students, whether these needs result from learning issues, poverty issues, or health issues. This often is not an easy task. Many classrooms will have children with a range of needs – the Ministry of Education recognizes 12 ‘exceptionalities’, including learning disabilities.

There are a number of ways in which we help our members deal with these challenges. For example, we have advocated for special education teachers to help classroom teachers more effectively address the needs of their special needs students. We have also advocated for increased Ministry of Education funding to provide appropriate professional development for teachers.

Last year, our federation published a teacher resource called ETFO Special Education Handbook: A Practical Guide for all Teachers. In addition to giving an overview of special education in Ontario, this resource provides instructional, environmental, and assessment strategies for teachers to use with students, based on their individual needs. These strategies address a wide range of needs commonly presented by students. This handbook was provided to each public elementary school, as well as to each Director of Education. This resource has been so well received by teachers that we have undertaken our third printing.

We are also in the final stage of receiving accreditation from the Ontario College of Teachers to offer the ‘Special Education Part 1 Additional Qualification’ course. This course, which is open to any teacher registered with the Ontario College of Teachers, addresses all of the exceptionalities outlined by the Ministry of Education.

This summer, we will begin a project that will bring together special education teachers from across the province to help them learn how to more effectively support classroom teachers in their work with special needs students.

In addition to our efforts, we acknowledge the key role of the Ministry of Education, Faculties of Education, and School Boards in providing professional learning for teachers working with special needs students.

David Clegg
President ETFO

Dear Minister – Special Education in Ontario

2008-07-17T18:56:00.002-04:00

Your child is found to have a learning disability. You want to get the right help for your child. You realize that changes will need to be made in the classroom. You believe that these changes come under the banner of “Special Education.”

But what is “Special Education”?

The Ontario Ministry of Education provides a definition on its website:

Special education programs and services primarily consist of instruction and assessments that are different from those provided to the general student population. These may take the form of accommodations (such as specific teaching strategies, preferential seating, and assistive technology) and/or an educational program that is modified from the age-appropriate grade level expectations in a particular course or subject, as outlined in the Ministry of Education's curriculum policy documents.

I have bolded two key words: accommodations, modified. These words are important, and you need to understand how the difference between them might affect your child’s experience in the classroom.

Your assumption is: “My child has a learning disability. The school system will do something to help my child overcome this handicap and ultimately become a productive citizen.”

But what is this “something”? Obviously the approach will differ with each child. It will also be constrained by limited resources. It will also be greatly affected by the skills of the teachers in your local school.

At base, however, special education in Ontario is guided by structures set by the Ministry of Education. Some responsibilities are delegated to local school boards, which in turn delegate certain decisions to school principals. At the bottom of the totem pole of responsibility (and the one with the most direct influence over your child), is the classroom teacher – who is charged with implementing the provincial curriculum … and providing either accommodations or modifications for your child day-by-day, hour-by-hour.

Accommodations basically mean: Your child will be expected to keep up with the standards set out in the provincial curriculum for his or her grade level, but changes will be made to “accommodate” your child. The quotation above from the Ministry of Education provides some examples of accommodations: specific teaching strategies, preferential seating, and assistive technology. Your child may be allowed to use a calculator, for example.

Modifications basically mean: Your child will not be expected to meet the standards set out in the provincial curriculum for his or her grade level. For example, a child in grade three may struggle with math and may only be able to process math at a grade one level. She will be graded against grade one standards. Equally, exceptionally bright students in grade three may be given grade six work to complete and be graded on that.

Our experience this past year is that the school system begins with accommodations and then graduates to modifications BASED ON THE EVIDENCE PROVIDED BY THE CLASSROOM TEACHER IN THE REPORT CARD.

Sorry for the capital letters, but that’s a key point.

The classroom teacher’s opinion about your child can trump everything else … or at least make the dialogue about how to best assist your child highly contentious.

If the report card says your child is achieving a “B” level, don’t expect the school to agree to significant intervention. Even if you have a psychological-educational assessment that underlines the grave emotional risks to your child that may result from inaction.

The province’s special education system is motivated by evidence generated in the classroom, and you are not in the classroom. The teacher is.

Is this a problem? You betcha.

NLD children in particular are at risk, because in the lower primary grades their verbal reasoning skills are often enough to compensate for their learning deficits, most of the time.

The long-term problem is, enabling children to rely on these skills sets them up for failure and emotional distress in the higher primary grades, when they will be expected to use abstract reasoning skills. In short, their verbal reasoning skills will fail when confronted with more complex problems, and they will need to learn new coping strategies.

But you should not have to wait until your child fails before you start to teach them the strategies that they will need to have long-term success.

The system, in other words, is stacked against the needs of kids with NLD. At least, in the lower primary grades.

The evidence of often does not appear in the classroom until well past the point when early intervention would be helpful.

This is what happened with us this past year. The classroom teacher appeared blind to the evidence of our child’s NLD. As a result, we ended up in furious battle with the school system.

Below is a letter I wrote to the Minister of Education in April 2008, and below that is the response I received from the ministry in July 2008.

*

April 2008

Minister

I would like to relate to you an experience.

I have a step-son who has just been designated as exceptional as a result of an IPRC decision. We, the parents, agree with this decision. However, we are disturbed by the journey we had to take to get to this decision.

My step-son was diagnosed with a learning disability last October. We paid for him to have a psychological-educational assessment outside the school system. We had no idea what the result would be, and we were surprised by the diagnosis. However, we agreed that the diagnosis was sensible, and we agreed with the recommendation of the assessing psychologist to move forward with a request for an IPRC.

Our experience was that the school took a “wait and see” attitude. They did not accept the diagnosis at face value. It became apparent that the classroom teacher thought our son was capable of meeting the provincial curriculum standards. These issues came to a head at our initial IPRC meeting, where our evidence was dismissed.

In fact, information we had provided to be part of the IPRC process was not forwarded to the IPRC committee. This formed the basis of the appeal we filed.

The school board asked us to attend a second IPRC meeting. We did, and the decision of the second IPRC overturned the decision of the first.

Ultimately, we got what we wanted. However, I want to raise with you a couple of points:

At the first IPRC meeting, the committee did not apply the criteria. Our son has a psychological-education assessment that clearly outlines his deficits and how he meets the provincial standard for “exceptionality.” The committee argued that other students were worse off and that our son therefore didn’t meet the criteria.
At the second IPRC meeting, a school board official sat in and said that 18-months earlier the Ministry of Education had sent around a memo to school boards instructing them to hold fewer IPRC meetings. She insisted that everything our son would need could be available through the school without going through the IPRC process.

Minister, with regards to the first bullet above, this is nonsense. We can only suspect that schools are attempting to manage their special education budget by denying students their right to be identified as exceptional against Ministry of Education criteria. With regards to the second point, we don’t know what to think.

Has the Ministry of Education asked school boards to limit the number of IPRCs? If so, why? How are students with identified deficits supposed to get the help they need if the process set up to identify and place them is “running interference” for budgetary pressures?

Finally, I would like to know how special education funding is assigned to schools and school boards. I know there is a funding formula that the Ministry of Education uses to disperse funds. How does special education needs fit into that formula? What does it matter to the Ministry of Education how many IPRCs are held in the province? If the IPRC process is the means of identifying and assessing the needs of children with learning disabilities, then why should there be any limits on it at all?

Thank you for your attention to my concerns.

Michael Bryson

*

July 2008

Dear Mr. Bryson:

Thank you for your e-mail correspondence regarding special education, IPRC’s and special education funding. Your e-mail correspondence has been forwarded to me. I regret the delay in responding to your email; however, I am pleased to answer your questions.

With respect to special education programs and services, while the Ministry of Education provides funding to school boards, special education program and service decisions are made by individual school boards. The Education Act and the Ontario Human Rights Code requires that school boards provide special education programs and services to students with special education needs. Decisions regarding how to use its funding to best provide supports for individual students are made by the boards, in consultation with parents, and taking into consideration the needs of the particular student as outlined in his or her Individual Education Plan (IEP). Because each student has a unique blend of strengths and needs, special education programs and services required to help an exceptional pupil learn need to be developed on an individualized basis.

With respect to IPRC’s, in October 2006 the Ministry of Education did share a memorandum with school boards. In this memo the Ministry reminded school boards that an IPRC is not required when both the school and the parents agree that the student should be placed in a regular classroom. This memo was not intended to override the IPRC process set out in Regulation 181/98. It was intended to assist principals and other board staff to implement the regulation in a way that respects parents’ rights while minimizing the administrative requirements. Parents retain the right to initiate the IPRC process for any reason. Furthermore, it is considered good practice to hold an IPRC when the parents/school/board consider a placement in a self-contained or partially integrated special education class.

Just as importantly, programs and services are to be provided as soon as possible for students with special education needs. Students with special education needs should be offered special education programs and services without undue delay, while waiting for an IPRC meeting or for additional assessments. As it relates to IPRC’s and funding, please note that IPRC’s are not used by the Ministry to generate special education funding for school boards.

With respect to special education funding, the Ministry of Education provides school boards with funding for students with special education needs through the Special Education Grant. Special Education Grant funding is incremental to the Foundation Grant and other special purpose grants of the Ministry’s education funding model, known as Grants for Student Needs (GSN). The Special Education Grant provides additional funding for students who need special education programs, services and equipment. Special Education Grant funding is enveloped for special education programs, services and equipment. Any unspent Special Education Grant funding must be placed in a special education reserve fund.

The Special Education Grant is made up of five components - the Special Education Per Pupil Amount (SEPPA), the High Needs Amount (HNA), the Special Equipment Amount (SEA), the Special Incidence Portion (SIP), and the Facilities Amount (FA). Again, none of these components is based on the number of IPRC’s conducted. More detailed information regarding the Special Education Grant and other GSN grants can be found on the Ministry’s website, under school funding (http://www.edu.gov.on.ca/eng/parents/funding/index.html).

Each school board uses its total GSN funding allocation (the Special Education Grant and other grants) to provide programs and supports to meet the needs of its students with special education needs. Decisions regarding specific special education programs and services are made by individual school boards.

The 2008-09 Special Education Grant is projected to increase by $67.3 million, to a provincial total of over $2.14 billion. This is an increase of over $516 million since 2002-03. This funding enhancement is the first instalment of the Government’s commitment to increase special education funding by 8 per cent by 2011-12.

Thank you again for your e-mail correspondence regarding special education, IPRC’s and special education funding.

Why NLD is confusing

2008-07-08T18:28:00.002-04:00

You know your child. You know there is something going on with him or her that defies all of your previous expectations and assumptions. But everyone is looking at you. Your parenting strategies aren’t working. Can’t you control or motivate your child?

No, you can’t.

As Sue Thompson puts it:

Clinically, this learning disorder classification resembles an adult patient with a severe head injury to the right cerebral hemisphere, both symptomatically and behaviorally.

And your local school is likely to be just as baffled. They see many more children with problems reading, for example.

Thompson writes:

Nonverbal learning disorders appear much less frequently than language-based learning disorders. Whereas it is approximated that about 10% of the general population could be found to have identifiable learning disabilities, it is thought that only 1 to 10% of those individuals would be found to have NLD (or between 1.0 to 0.1% of the general population).

But while your child can read, he just can’t “get” basic math. She just doesn’t mix well with her peers. He can’t keep his desk clean. She explodes with anger if there’s even a small deviation in the regularly scheduled programming. He struggles to write half-legible words and keep the size of his letters below half-an-inch. She can’t do up the zipper on her coat, find her favourite doll on the other side of the room or put on her socks.

Did I mention your child can read? So what are you complaining about?

All of those other things are just behavioral or motivational problems. Aren’t they?

No, they’re not.

As Byron Rourke calls them, they’re the result of the “neurodevelopmental dynamics of the syndrome of NLD.”

Rourke writes:

(1) New learning of any sort, especially in complex or novel situations, is very difficult for children who exhibit the characteristics of NLD. New learning experiences must be introduced very gradually to such children; they must be apprised verbally of all of the elements of the learning situations; these verbal descriptions and elaborations need to be repeated and expanded upon frequently; the initial phases of the learning process for such children are very slow and laborious.

(2) When faced with novel or complex learning requirements, persons with NLD quite typically fall back on the use of some overlearned procedure for dealing with the situation, without regard for the unique aspects of the new learning task. This excessive reliance on previously overlearned responses and techniques becomes less and less appropriate as development proceeds. That is, it becomes progressively less likely that individuals with NLD, left to their own resources, will learn new or complex task demands in an adequate manner. Instead, there is an increasing tendency toward stereotyped or even perseverative responding. Put another way, they exhibit more and more difficulty in learning in any number of day-to-day situations.

(3) Adaptability is the terminus ad quem, the raison d'etre, the final cause of brain-behavior development. Deficiencies in adaptability are, essentially, deficiencies in learning. In this sense, the rather debilitating set of learning problems experienced by the person who exhibits NLD are among the very worst that can be imagined from a psychological perspective. The social and vocational incompetence, the withdrawal, the psychic pain--all of these are terminal adaptive manifestations of failures of learning.

Emphasis added

Sounds bad, huh? So why isn’t the school system jumping up and down to help you?

Why is NLD so confusing, even to people who you expect to know better?

I’m going to hazard a couple of guesses:

“Other students are worse.” We heard this more than once this past year, and the logic still defies me. Your child may have a learning disability with an awful long-term prognosis, but we can’t do anything for him right now because other children are worse off. Excuse me? Yes, there limited resources and only so many hours in a day, and the school did implement limited “accommodations” (they expected less work from him than other students). However, doing less is not doing enough; it’s not really doing anything, is it? We expected a proactive engagement with the school to negotiate on an ongoing basis what works well and what doesn’t. We didn’t get this last year (the first year post-diagnosis). For next year, our expectations are unchanged.
“We don’t have the resources.” Another excuse we heard this past year. At one point during the year, our son went to a special class for help with math. The special education teacher, however, had no expertise in math and every other student in her room was getting extra help with reading. When asked what unique techniques she was using to deal with an NLD child, she shrugged. None! She just tried to provide him with incentives to get the right answers. This, of course, completely ignores the neurological basis of the learning disorder. The right answer is break down the steps into smaller increments and increase the verbal relationship between teacher and student. Though even that may not be enough, given the neurological deficit at the root of the problem.

Wait! These aren’t answers about why NLD is confusing. They’re excuses from the school system about why they struggle to address complexity.

NLD is complex. That’s the first reason why it’s confusing.

To my mind, NLD is a disorder of disorders, but that’s a poor technical definition. First, because NLD is a condition with both assets and deficits. Some things you child can do very well. Better than average. Other things your child can’t do well at all.

Your local teacher (like ours) may take the attitude that some strengths here, some weaknesses there, is just sort of average.

No, it isn’t.

An added complexity is that NLD kids develop coping strategies that mask their deficits. They can become good at hiding their problems and their pain. Most of the time.

They may save their worst behaviour for you at home.

Which gives the school another excuse to do nothing:

“Something must be going on at home.” All of the dark implications behind this excuse I refuse to explore. Let’s just say that, yes, sometimes some things do happen at home. But when you have a child with a diagnosed learning disability, you don’t expect to be asked this question. You expect to be asked to help develop a plan of action for assisting the child.

Rourke’s professional opinion is:

… the NLD syndrome should be viewed within a specific context of cause-and-effect relationships; that is, the basic neuropsychological assets and deficits are thought to lead to the secondary neuropsychological assets and deficits, and so on, within the four categories of neuropsychological dimensions. Moreover, these assets and deficits are seen as causative vis-à-vis the academic and psychosocial aspects of the syndrome. In this sense, the latter dimensions are, essentially, dependent variables (i.e., effects rather than causes) in the NLD syndrome.

Emphasis added

He provides a diagram on this page to illustrate his point.

His point, as I read it, is that NLD has some basic core assets and deficits, and upon this foundation second-level and third-level assets and deficits build. Your child’s behaviour, however, is at the opposite end from the cause. We have all been well trained to believe that behaviour is psychologically motivated. NLD flips that assumption, which will confuse behavioralists everywhere.

We have finally come to a deeper level of analysis. Because how your child behaves, responds to others and approaches tasks both formal and informal is how others will primarily judge him or her. But what your child exhibits to others is often a poor indication of how he or she actually understands the world.

As one parent of an NLD child told us, “I find myself acting as a translator of the world to my son, and a translator of my son to the world.”

The world doesn’t understand NLD kids, and NLD kids don’t understand the world.

That’s why NLD is so confusing.

What is behind all of that misunderstanding?

A thousand posts on this blog will only scratch at the surface of a potential answer to that question.

IPRC – What You Need To Know

2008-07-07T21:58:00.003-04:00

Identification, Placement, and Review Committee. The source of assistance for your child or perhaps the source of nothing. It depends who you talk to. It depends on what happens at the committee meeting.

Virtually all resources about how to get help for your learning disabled child describe the IPRC as the avenue towards remedy.

The Ontario Ministry of Education website, for example, states:

All students require support from teachers, classmates, family, and friends in order to thrive and to gain full benefit from their school experience.

...

All students formally identified as exceptional by an Identification, Placement, and Review Committee (IPRC) must have access to an education that will enable them to develop the knowledge and skills they need in order to participate in the life of Ontario's communities.

It all sounds so simple! So hopeful!

But to help prevent you from running full-steam into glass walls, as we did, I provide the below pointers.

Key phrase #1: "formally identified as exceptional."

The only unambiguous word in that phrase is "as." The rest you need to watch out for:

"formally" means the IPRC says so
"identified" means the IPRC says so
"exceptional" means … well, let’s go directly to Regulation 181/98 of the Education Act. Understand it now?

The Ministry of Education website provides a summary of the regulation. It summarizes "Who is identified as an exceptional student?" as follows:

The Education Act defines an exceptional pupil as "a pupil whose behavioural, communicational, intellectual, physical or multiple exceptionalities are such that he or she is considered to need placement in a special education program...." Students are identified according to the categories and definitions of exceptionalities provided by the Ministry of Education.

This is clearly inadequate and tautological. A student who needs help is a student who needs help, it suggests. Then it refers to the "categories and definitions of exceptionalities provided by the Ministry," which is doesn’t even provide a hyperlink to. Some summary! Let’s make this our second key phrase.

Key phrase #2: "categories and definitions of exceptionalities."

Getting your hands on these categories and definitions "provided by the Ministry of Education" one needs to be intrepid. They begin on page A18 of this pdf’d document: Special Education: A Guide for Educators (2001).

That document also helpfully notes that "these broad categories include the following definitions, as clarified in the memo to school boards of January 15, 1999." I haven’t been able to get my hands on that one yet. However, we were told, essentially, that the IPRC process is redundant. (More on that below.)

Let’s stick with these categories and definitions for the moment, because they are terribly important. Your first task at the IPRC meeting is to convince the committee that at least one of the categories and definitions describes your child.

We attended two IPRC meetings this past year. At the first we were told point blank that our child didn’t meet any of the categories or definitions. Our child had a diagnosed nonverbal learning disability. However, we were told that his case didn’t rise to the standard set out, which is that the disability "results in a significant discrepancy between academic achievement and assessed intellectual ability."

And we had a psychological-educational assessment that clearly stated the "significant discrepancy" existed.

Key phrase #3: "results in a significant discrepancy between academic achievement and assessed intellectual ability."

The first IPRC committee gave us a plain language paraphrase of this standard. They said our child wasn’t doing poorly enough to warrant being labeled "exceptional."

He may have a nonverbal learning disability, but before we can start to help him he needs to be worse off that he is right now.

So much for a student who needs help is a student who needs help.

We were told that students who are defined as exceptional are typically two grade levels behind.

However, after we consulted the good folks at the Learning Disabilities Association of Ontario, we discovered that the IPRC committee hadn’t applied the standard. The psyche-ed assessment we had clearly showed that our child had "a significant discrepancy between academic achievement and assessed intellectual ability." That was the only thing that mattered – within the framework of the Education Act.

We complained to the Board of Education, which reconvened the IPRC. At that second meeting, the committee reversed itself, deciding that our child did fit within the "categories and definitions" and would benefit from "special education." The second meeting was fractious, but we got the decision we wanted.

The point here is that the IPRC’s decision to confer or deny "exceptionality" to your child is a key moment in your battle to get your child the help he or she needs.

Unless it isn’t.

Key phrase #4: It doesn’t matter anyway

This phrase doesn’t appear on any official document, but we’ve heard variations of it from many different people – from fellow parents to the Supervising Principal for Special Education for our region.

Fellow parents say: You may get the IPRC decision you want, you may be the IEP you want, but then you have to fight with the classroom teacher constantly to make sure the suggested, recommended and required actions take place. You can have all the right paperwork, but if the teacher doesn’t follow through, your child won’t benefit.

For this reason, many people don’t bother with the formal IPRC process. Having to prove the obvious to a committee of strangers with no real promise of reward isn’t worth it.

On the other hand, we were told by the Supervising Principal for Special Education that the Ministry of Education "wants fewer IPRCs," and that we should be able to get the help our child needs directly from the local school. She said the ministry had sent out a memo to this effect. I believe it is the memo of October 12, 2006.

The memo states:

In the past, some students have faced barriers or delays to accessing special education programs and services because of the paperwork required in the IPRC process. The Ministry is now reminding boards that an IPRC is not required when both the school and the parents agree that the student should be placed in a regular classroom. We believe that this reminder should allow a substantial reduction in the number of IPRCs.

This memo is not intended to override the IPRC process set out in Regulation 181/98. It is intended to assist principals and other board staff to implement the regulation in a way that respects parents’ rights while minimizing the administrative requirements.

Parents retain the right to initiate the IPRC process for any reason. Furthermore, it is considered good practice to hold an IPRC when the parents/school/board are considering a placement in a self-contained or partially integrated special education class.

Programs and services are to be provided as soon as possible for students with special education needs. Students with special needs should be offered special education programs and services without undue delay, while waiting for an IPRC meeting or for additional assessments.

Reducing the numbers of IPRCs will allow school boards to redirect their resources to programs and services that will help students to succeed.

Emphasis added

This is advice you are unlikely to find anywhere else.

Key phrase #5: They won’t give us one

I heard this from a mother in the schoolyard. "They won’t give us an IPRC." She and her husband had been told that their child didn’t meet "the standard" and an IPRC wouldn’t be set up for their child.

I said, "You have a right to an IPRC. If you put it in writing to the principal, an IPRC meeting must be set up for you."

That’s the final point today. It’s affirmed in the memo of October 12, 2006: "Parents retain the right to initiate the IPRC process for any reason."

Whether it will prove beneficial to you – that’s something else altogether.

*

This post has focused on the "I" part of IPRC. It is the part least likely to interest you as a parent. You want to talk about the "P" part, I’m sure. Placement: How to help my child. That’s the conversation we wanted that was delayed for months and months. Placement is the connection to the IEP, which I wrote about earlier. That’s the action plan.

What did we learn this part year about IRPCs? They are adversarial and contentious. They are gatekeepers of a potentially redundant process and may, in fact, be meaningless. However, getting "exceptionality" confers status under the Education Act and means the school system must now track the progress of your child in a more formal manner.

Was it worth it for us? I think so. But time will be the only true judge.

Trust, but verify

2008-07-02T17:34:00.004-04:00

So it came about that I was reflecting yet again on our experience of the past year. Dealing with the school system’s “officialdom” seems to have left me with a bout of post-traumatic stress. I don’t intend this to be an exaggeration.

For example, the first piece of advice that comes to mind is don’t trust anything the school system says to you. However, I must temper my cynicism with a dose of reality.

One must find a way to develop a professional rapport with the school system. One way to do this is to “trust, but verify,” a phrase popularized by Ronald Reagan. He was talking about negotiating nuclear arms treaties with the Soviet Union.

That’s how you must treat the school system. Like they are the Evil Empire that is capable of reform. The Soviets called it Glostnost. The school system calls it Education for All (2005).

There is also:

the Minister’s Advisory Council on Special Education
the Special Education Transformation Report (May 2006)
an October 12, 2006 memo from the ministry updating the "transformation" and
the more recent Directions for Special Education in Ontario (2007).

What do I mean, “trust, but verify”?

Basically, you need to know your rights and the rights of your child. What you want is simple: you want what you and your child are entitled to. The school system cannot say no to that. However, they can find multiple way to justify their failure.

For example, in 2003 the Auditor General of Ontario conducted a follow-up review of special education in Ontario. That report is available online here. The key thing to note in that report is that the majority of IEPs the auditor reviewed in 2001 “did not meet either regulatory requirements or ministry expectations.” Some improvements had been made by 2003, but not enough.

Provincial standards are non-negotiable. Your child is entitled to the minimum standard. Know what it is. Insist that your school officials meet it. That’s what they get paid to do.

Here’s where the trust part comes in. Despite all of the problems you may encounter with school officials, you must persist in trusting that they have your child’s best interest at heart.

Here’s where the verify part comes in. Let them know that you are aware of the provincial standards. Tell them that you want measurable performance measures to ensure that these minimum standards are met. Tell them you will be verifying the measures you propose.

It’s what they should be doing anyway.

Of course, you will not be measuring the school system per se. The performance measures will be an official part of your child’s IEP. And you will be officially measuring your child’s progress. This is what the school should be doing for you: providing meaningful progress updates. Among other things, this is what the Auditor General found lacking in his review.

Let me repeat: this is what the school officials get paid to do. Help your child progress. Inform you in meaningful ways how that progress is happening or not happening. If it’s not happening, this is an opportunity to revise your child’s IEP.

Don’t expect miracles of your child. In fact, expect incremental progress. You and the school should set goals for your child that he or she can meet. The goals will need to be revised whether your child meets them or not. If the goals are met, then make a more complicated set of goals. If the goals are unmet, simplify them.

All of the above assumes that your child has an IEP and that the school has involved you in drafting it. The IEP is the key document and the where the “problem” and “solution” should be clearly defined. Argue about these definitions until you are blue in the face. This is the battleground you will never cede.

Getting to this battleground took us virtually all of the past school year.

But that’s another story.

Books on NLD

2008-06-17T17:48:00.007-04:00

Being the bookish type, I headed to the (online) book store after my step-son was diagnosed with a non-verbal learning disorder.

What was this thing? What did it mean for him? What did it mean for us? What did we need to do to help him with it? What did the school need to do? How could we make everything all right?

Books I will discuss briefly below include:

Briding the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalyn Varney Whitney (2002)
Helping a Child with Nonverbal Learning Disorder or Asperger's Disorder (2nd edition) by Kathryn Stewart (2007)
Raising NLD Superstars: What families with nonverbal learning disabilities need to know about nurturing confident, competent kids by Marcia Brown Rubinstien (2005)
Nonverbal Learning Disabilities at Home: A Parent's Guide by Pamela B. Tanguay (2001)
Nonverbal Learning Disabilities at School: Educating Students With Nld, Asperger Syndrome and Related Conditions by Pamela B. Tanguay (2001)

Briding the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalyn Varney Whitney (2002)

This is the first book I read on NLD. I found it helpful, hopeful and reassuring. The author is a pediatric occupational therapist and the mother of a son with NLD. I continue to recommend this book to people. However, I do so with a couple of caveats:

1) The author tends to generalize about children with NLD based on her own experience with her son. There were certainly many pages when I found myself nodding in agreement (just like my step-son, yup), but there were too many pages when I didn't recognize the behaviour described. Later, I read better advice: When you have met one child with NLD, you've met one child with NLD. They're all different, as all children are. They share a diagnostic profile, but there is much room for variety within this condition. Generalization is helpful, but also potentially harmful.

2) The tone of this book is like a Beach Boys song on a summer day. It is soothing and cheerful and it is hard to imagine that there is anything wrong with the world. However, there is much wrong with the world, and I just couldn't sustain the optimistic frame of mind implied by this book all the way through to the finish. There is much in this book that is useful, and others may find the tone more suited to their view of the world, but I ultimately decided I wanted to know more "hard truths" and a more neutral approach to the condition, its ramifications and remediations.

Helping a Child with Nonverbal Learning Disorder or Asperger's Disorder (2nd edition) by Kathryn Stewart (2007)

I have only read back and forth in this book, but I read enough to buy copies for members of the extended family. For one, this book is up-to-date on the latest research on the condition. For another, it provides both a descriptive overview of NLD and detailed strategies for addressing some of the more perplexing and disabling manifestations of the disorder:

addressing deficits in organizational skills and information processing
learning to learn: interventions for successful learning experiences
bodies in motion: addressing deficits in visual-spatial processing and sensory-motor integration
social competency: issues of the self, others and self-esteem

Raising NLD Superstars: What families with nonverbal learning disabilities need to know about nurturing confident, competent kids by Marcia Brown Rubinstien (2005)

I'm nearly done this book right now. I'm sure I will read it again and again and again. It is written by a former teacher (now "educational consultant") and mother of an NLD child (and three other children). It is full of mother wisdom supplemented with clinical research and critical thinking. It is funny.

Unconditional love, infinite patience and an iron will: These are the qualities you will need to parent a child with NLD, according to this book. They are qualities any parent needs, but children with NLD demand these qualities in the highest quality.

I can't recommend this book strongly enough.

Nonverbal Learning Disabilities at Home: A Parent's Guide by Pamela B. Tanguay (2001)
Nonverbal Learning Disabilities at School: Educating Students With Nld, Asperger Syndrome and Related Conditions by Pamela B. Tanguay (2001)

I have not read either of these books, but my wife has stuffed the "Parents Guide" with yellow sticky notes and asked her ex-husband to buy a copy (promising also that it will be the only thing she asks him to do all year). The school guide my wife has lent to the school (which reminds me, we need to get that back). The classic guides are written by the owner and co-developer of NLD on the Web.

Some Links That Might Help

2008-06-01T11:25:00.003-04:00

This blog exists to assist other parents who have a child with a non-verbal learning disability. My step-son was diagnosed with NLD last year, and we have been on a steep learning curve ever since. Below is a list of links to resources that may prove useful to others.

Every child, of course, is different, and every teacher and school is different also. However, in Ontario there are processes for identifying and helping "special education" students that are common throughout the province. You may be told that these processes are cooperative between the school and the parents.

My first piece of advice would be -- Don't take that at face value. You are your child's advocate, and you need to understand your child and what you want out of the education system better than anyone else.

I will blog more in the future, explaining some of the things we learned this past year. For now, here are some links that, hopefully, might help you, wherever you are.

*

WHAT IS NLD?

2-page outline

NLD - Wikipedia

What is NLD? (good overview)

*

ABOUT IEPS

IEP background info (People for Education)

Ontario Ministry of Education IEP page

The IEP meeting (eHow)

Developing an Educational Plan for a Student with NLD (including "illusion of competency") (LD Online)

Developing an Educational Plan for the Student with NLD (NLD on the Web)

*

ABOUT IPRCS AND PROCESS INFORMATION

TDSB study on the IPRC process

Ontario Special Education Tribunals

*

TEACHER / SCHOOL RELATIONSHIP WITH PARENTS

Ontario Elementary School Teachers’ Federation – The Parent/Teacher Relationship

Teacher credentials in Ontario (Ontario College of Teachers)

How teachers can advocate for their LD students (LD Online)

Shared Solutions: A Guide to Preventing and Resolving Conflict (Ontario Ministry of Education, 2007)

A Guide for Principals to Support Teachers (Elementary)

Ontario Principals Council

School Leadership in Special Education (Submission to Ontaro Principals' Council, 2005)

Elementary Teachers Federation of Ontario

ETFO - Dealing with Conflict

*

SPECIAL EDUCATION IN ONTARIO

Auditor General of Ontario
2003 - Special Education Grants to School Boards (follow up to 2001 audit)

Education for All (2005)

Council of Ontario Directors of Education (2005/06) -- Special Education Project

Special Education Transformation Report (2006)

Oct 12, 2006 memo on special education

Directions for Special Education in Ontario (2007)

Special Education Update (Feb 2008)
Ontario Council for Exceptional Children

People for Education - 2008 Report

*

SUPPORTS / RESOURCES

Alphasmart

Integra

Parent support group

Ontario Psychological Association - Student Assessment Project

Kidspiration DVD (from Learning store)

LD Resources

A tutor may be a tax deductible option

*

CURRICULUM & TEACHING STRATEGIES

Screening in the early years for mathematics difficulties and disabilities: Identifying red flags to support early learners at risk (research paper)

Number Race (numeracy computer game)

How do NLD kids learn math?

Different types of math learning problems

NLD at school (teaching strategies)

(scroll down to) Teaching strategies for NLD students

Meeting the child with NVLD’s needs in the classroom (Powerpoint)

Ontario Curriculum Unit Planner

Online teaching resource - JK-6

Exemplars for student work and corresponding grades

"Tests in Print"

Curriculum guide (1)

Curriculum guide (2)

*

PARENTING

Kids push the hardest against the ones they trust the most (Toronto Star)

What’s wrong with being angry? (CNN, Oprah.com)

Taking play seriously (NY Times)

Handling misbehaviours

Children's self-esteem (Dr. Robert Brooks)

Organization advice for parents (Teacher Vision)

Self-esteem Resources (LD Online)

*

NEWS / ARTICLES

TORSTAR: "According to a 2008 survey of Ontario schools by the advocacy group People for Education, 15,000 elementary schoolchildren are waiting for special education this year in the GTA."

BC court case on special education (Vancouver Sun)

“This improved funding together with the $1.7M identified above will help reduce the originally projected deficit in Special Education to approximately $7.4M.” (TDSB release)

Essay on autism (CNN)

Tim Page article in The New Yorker (re: growing up with undiagnosed Aspergers)

National Public Radio - Material on Tim Page and Aspergers

Special Education Fails 24% of Disabled: Statscan