Non Verbal Learning Disorder and Us

It was interesting to read in the new blog of Stephen Drake (of Not Dead Yet fame)about the negative experience he has had with the diagnosis and literature of NLD.

My son started on the path toward his diagnosis in pre-school. I was having a really hard time teaching him to zip his coat and asked my daughter's OT for suggestions. She watched my son struggle and gave me a bunch of suggestions and some literature about sensory processing to read. The info was a lot of help and once he was no longer facing the northern NY winters with his coat flapping I was happy.

When he went to school he demonstrated a quirky mix of really high level abilities in some areas and struggles and dysfluencies in other areas. Sometimes teachers loved him and other times he drove them to distraction. They did test him again at some point and found that he had an average IQ (turns out that was a pretty meaningless statement because the gap in his scores is so wide, but I didn't realize that was so significant at the time.)

In 4th grade formal evaluations took place. The words 'Non-Verbal Learning Disorder' were spoken for the first time. We were told a lot of test results and I was given a spiral notebook of information and strategies. When I got home and read through that notebook I was devastated. It was chock full of 'will nevers' and 'can'ts.' After stewing in it for several hours I called our developmental pediatrician (who was also a personal friend) at home. The literature made it sound like my son's prognosis held less hope than we expected for my daughter who has Down syndrome. I don't really cry much, but I was crying then.

Where the more familiar learning disabilities were characterized with (among other things) higher scores on the performance side of the IQ score and lower scores on the verbal side, in NLD the verbal scores are higher and performance scores are lower. There are difficulties with large and fine motor skills, reasoning, social fluency.

After my conversation with my friend that night I fluffed up my pink feathers and gave myself a talking to: this was not our first brush with disability, we already knew things about my son that exceeded the "will never" list that we had been given for example:

-He has always had a pretty funny sense of humor,
-We had already seen him overcome learning obstacles and then excel with the new info.
-We had already seen much progress with things like social fluency.
-We already had evidence that he drew connections between pieces of information that he had learned (though his way of expressing this often made people shake their heads!)
-My own verbal vs. performance abilities probably have a similar configuration and I am making it...

And most of all:

-He was-and is-a great kid!

We decided to use the suggestions we deemed helpful and toss out the rest of the book (I literally ripped the book apart--I did not want to take the chance that he would ever find and read it!) We decided to trust him and ourselves.

Since that time I have found a couple of books I do like about NLD: Bridging the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalynn Varney Whitney and Raising NLD Superstars by Marcia Brown Rubenstein are two.

We arranged for a 504 plan for my son which was really never implemented so in 7th grade he was given an IEP. His modifications include double time for certain activities, word processing instead of handwriting (handwriting is and has always been impossible--his legibility is fine, but the motor-planning takes YEARS!), separating input from output (he can't write while listening, but he has a long working memory so he can record his notes later), and help organizing.

With these supports in place he succeeds. He does well in school, does well on standardized tests, acts in school plays, reads fantasy novels, plays video games and avoids dishes and bedmaking like every other highschool kid.

PSAT scores are back with very positive results so now we are working on learning what he will need to know how to do (like advocate!) to succeed in college...

Can he? We certainly believe so! We do not ever accept "can't" without proof anymore... actually, I only accept "can't right now" these days (and that only after a fight!)

And the only expert I believe about my son is him.

PS: Are migraines common among people with NLD, does anyone know? Everyone I know with the diagnosis has them...

See my other posts about NVLD here.

Katie

In Tazewell County, IL on 1/18/08 Dr. Karen McCarron was convicted of the murder of her 3 ½ year old daughter, Katie. According to news reports Dr. McCarron stated to the police and to the jury that she had suffocated her daughter with a garbage bag on May 13, 2006 purportedly because she had a diagnosis of autism.

Cases like these are terrifying to the disability community. There is a common perception that people with disabilities are perpetually ‘suffering’ and that this ‘suffering’ is somehow contagious to everyone around them. This perception seems to throw a switch in some folks that almost imperceptibly moves them from being human WITH someone to being humane TO them. The person becomes less important, the ‘suffering’ (diagnosis) becomes the only thing that matters.

Once the ‘suffering’ becomes the focus, alleviating ‘suffering’ becomes the goal—or obsession—and what happens to the humans involved is seen as collateral damage. Anything can be justified.

In Katie’s case the perception that hers and her mom’s suffering were monumental persisted even though she had not lived with her mom in months and it was reported by all the folks that she HAD lived with that she was happy, singing, loveable, little girl.

While daily care presents challenges for people with disabilities, clinging to the slippery slope created by prejudices, general perceptions and policies is an out-and-out battle for survival. Organizations like Not Dead Yet exist to fight this battle.

Throughout history this battle has occurred on many fronts—babies with disabilities were left on hillsides to die in ancient Greece and folks with disabilities were high on Hitler’s extermination list—and it rages on today.

In the last year there have been stories out of Portland, Oregon and Lexington, Kentucky telling of abuses in large institutions—and these are just the stories that made the news. Our taxes continue to fund these institutions despite overwhelming evidence that they are much more expensive (and less desirable) than community-based housing alternatives.

Life expectancy, health, educational gains and quality of life for people with Down syndrome are higher than they have ever been, yet the American College of Obstetrics and Gynecology came out with a recommendation last year that ALL babies in utero be tested for Down syndrome. They made this recommendation while knowing that 85-95% (depending on who you read) of all positive tests for Down syndrome result in abortion. And one of my friends was at a conference two weeks ago where it was announced that the birth rate of babies with Down syndrome in California was nearly down to zero.

In the last couple of years there have been surgeries performed on children with disabilities that would be refused to people without disabilities even if they requested it. There is an overriding belief—even in this age of amazing accomplishments in science and technology—that the challenges of disability are just impossible to address any other way. And that anything is justified to alleviate ‘suffering.’ The effect on these children of being customized for ease of portability may never be known, the effect of treating a person with a disability in ways one would never treat a person without a disability (aka dehumanizing them) diminishes everyone. It is a sign telling us who we really are.

The disability community is relieved and grateful that the judge and jury in Illinois recognized Katie’s humanity and convicted her murderer.

Her father told reporters, “If the measure of a person’s life could be quantified by the number of people that loved them then Katie, in her brief 3 ½ years, achieved well beyond all of us.”

Pictures (and context for which they may be used) here.