Friday, March 6, 2009

Blog Recommendation: Barriers, Bridges and Books on "NVLD and Us"

Today I checked the blog Barriers, Bridges and Books and found two surprises waiting for me.

First, she gave a nice shout out to this blog and to the NDY blog.

Second, the topic of the day was "Non Verbal Learning Disorder."

As you might have noted, the terminology she uses is a little different than the one I used. Both "disorder" and "disability" get used. Not even the acronym is standardized yet - both NVLD and NLD are widely used.

It doesn't matter, though. Whatever variation of the term we use, we're referring to that same general pattern of strengths and relative weaknesses on tests that purport to measure intelligence - sometimes supplemented by other diagnostic tools cherished by neuropsychologists and school psychologists.

It's an "overcoming" story, but not in the sense we generally encounter in the disability community. It's a terrific "overcoming" story about her successful struggle to move past the incredibly negative "prognosis" that came with the news that her son had nonverbal learning disorders.

Sometime soon I'll be adding a blogroll to this site, and Barriers, Bridges and Books will be on it. Terri is a dedicated activist/advocate here in Rochester, NY. And she's a very good writer. Take it from someone who reads a lot.

So - especially if you're a parent of someone with NLD/NVLD, please read the following blog entry today for a healthy reality check:

Non Verbal Learning Disorder and Us

I might even revisit this entry in the future to share some of my own reactions, but I'm strapped for time today. --Stephen


Terri said...

Thanks back to you, Stephen!

thecatsmeow said...

Hi, Stephen,
I came to know about you a long time ago after finding your original webpage from eons ago about hydrocephalus. I, too, am a survivor of that particular problem, which is why I laughed a little at the title of this blog. My blog, which is linked at Terri's, too, was inspired by my struggles with NLD and the inability of society to "get" us as a group. (And really, too, their general cluelessness regarding the effects of hydrocephalus, of which NLD can be one.)

Now that I've discovered you're out here in the blogosphere, I hope you don't mind if I link to you on my blog, which is titled "If it ain't broke...(and what happens when it is!). I'll be curious to see what this space becomes over time!

Stephen Drake said...


eventually, I'll post quite a bit of the content from the old page to the blog as entries. The pictures look familiar, eh?

I am really glad you found me - I'll make sure to put you up on the blogroll when I get that up. I hope to do that within the next couple weeks. I haven't figured out yet if there's a way I can put the blog links in categories.

Thank you for visiting and linking - I've already visited your site and found it interesting reading. As I said, I'll be linking soon. --Stephen

Karen Rothfus said...

Stephen, Thank you for your blog. It lead me to Terri's which is just what I needed right now.

My son was diagnosed in-utero with hydro. After he was born they found his hydro had arrested and so he was never shunted. One dr told us he would never walk or talk, while two others told us he would be perfect.

The next nine years he did perfect but after some struggling in third grade, I decided to have him tested and he was found to have NVLD.
For me it was devastating. Everything I read tells me how bad he will be. Hearing from you gives me hope.

Stephen Drake said...


Thanks for taking the time for telling me that the blog recommendation was helpful. It means a lot to me that a parent in your situation found Terri's post.

That is exactly what I hoped would happen.

Please check back from time to time. I hope you'll find it useful, even if I wander around on topics.

Most of what I write is pretty task-oriented, and I am still feeling my way into just what I want to say and how to say it here. --Stephen

Stephen Drake said...

Just a clarification...

What I *meant* to say is most of what I write for the NDY blog is task-oriented.

This a less-clearly defined zone. And one I am still figuring out.


Karen Rothfus said...

Un-clearly defined or not I enjoy and prosper from whatever "mind wanderings" you wish to share as I am a mother searching for answers and your insights will help provide me with answers and understanding.

For example, I am beginning to realize there is a wide range of NVLD's symptoms and wonder if those with hydro and NVLD are different then NVLD alone, or if it is related to the severity, or differences, of the NVLD.

My son is 9 and fits in that he has great rote memory skills and oral learning ability. His small motor skills are not great,he can write, but sometimes has trouble marking the correct answer and will do anything to get out of tying his shoes. Yet he is awesome at large motor skills such as soccer, snowboarding and such. His comprehension and math skills are poor. His IQ is said to be average. Socially he seems fine, perhaps sometimes a little intense, yet quiet and shy at school(never seemed out of the ordinary to me, but now I question it). He is very aware of time and is very organized.

Sometime could you elaborate on your strengths and weaknesses and let me know what helped you succeed. Right now I am trying to find out what tools will help him learn comprehension and solving problems that do not use rote memorization. Any insight would be greatly appreciated.

Stephen Drake said...


I don't know if having hydro makes for a special subgroup or not. A blog entry I came across awhile back highlighted a study that divided NVLDers into two main groups based on a study on humor. I'll probably get around to posting that and commenting.

But the short version of my take is this - *any* label creates an illusion of homogeneity regarding the people who fall under that label. Any label comes with a diagnostic grab-bag of identifiers, and you only need *some* to get the label.

Ari Ne'eman, president of the Autistic Self-Advocacy Network was quoted as saying "when you know one autistic person, you know one autistic person."

Whatever the label, we all some with a high degree of variation in terms of our relative strengths and deficits, natural supports, motivations, interests and personalities, etc.

That doesn't mean that there's nothing to learn from people with NVLD - we do have similarities, many of us share the same struggles.

I don't think I'm unique in my set of neurological differences, but I my own experiences definitely aren't representative of all people with hydro and/or NVLD.

Hopefully, I can say something useful or entertaining once in awhile. --Stephen

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