NVLD and Social Learning

During my Partners in Policymaking course I was privileged to hear Al Condeluci speak. Al is the Executive Director of UCP in Pittsburgh. He grew up with a cousin who had Down syndrome and has been a lifelong proponent of quality lives, relationships and belonging for people with disabilities.

His talk at Partners was a how-to seminar on joining and belonging to integrated groups for people with disabilities. His warmth and enthusiasm were contagious and his strategies were completely practical and useable--and honestly would work for anyone.

He said that people usually join groups around interests like gardening or trains or photography or Civil War re-enactment rather than around characteristics.

So the first step is to determine an interest. After that, there are a few things to observe:

* People who BELONG in a group share a common vocabulary (for example for photography: camera, film, digital and flash for starters) as a beginner you don't need expert vocabulary, but try to learn some of the basics.

* There are social customs or patterns that people who BELONG to a group observe. For example, certain people always sit in the same seat--if you wish to BELONG, do NOT sit there. Watch the group for a bit to notice the way things are 'always done' and respect that. You can make additions and help with changes once you really belong, but NOT in the beginning.

*Groups follow a typical bell curve. 20% Negative, 60% undecided (waiting to be seduced is what Al called them!) and 20% what Al calls Positive Gatekeepers. Many folks make the mistake of begging for the good graces of the negative folks which they will NOT ever give you--forget them. Observe the group to figure out who the Positive Gatekeepers are--they are the conduits to belonging. They will say "hi, come with me, let me introduce you to everyone!!" because that is just who they are.

*Introduce yourself to the positive gatekeepers and ask them to bring you aboard.

I went home from Partners and tried this out a number of times for my daughter who has Down syndrome, with excellent success. I never gave it much thought for my son, until one summer he was in a drama group and bringing a book with him to read on breaks.

I mentioned to him that people who saw him with a book probably wouldn't talk to him much because they would think he was busy... He said the kids were playing cards during breaks and hadn't asked him to play.

Thankfully, I thought of Al's talk.

"Do you know how to play the game?" I aked. He said he had watched and thought he did know the game.

Then I pulled out my notes and showed them to him. He had indeed noticed some of the social customs I was talking about.

The next day he want in, book in hand, to watch for who the positive gatekeepers might be.

He came home with a person in mind.

He said it would be awkward to ask, but I assured him that positive gatekeepers do this for everybody and won't even notice. Then we had to come up with a question to ask. He decided on, "I think I have figured out how to play the game, could I try?"

The next day he got out of the car with his book again...

When I picked him up he told me he had played cards all day, and the next morning I noticed he left his book at home.

Continuing Growth.

It has been several years since that summer cardplaying success. Social stuff still doesn't always come easy, but it is ever improving.

My son still starts conversations in the middle without giving context sometimes... and he still is more comfortable with smaller groups than larger ones. And I am always looking for strategies that I can explain that will expand his repertoire. (In fact he read this post by Stephen Drake and said he was going to remember this to try.)

And two weeks ago he went to a big end-of-the-schoolyear event. When I went to get him I expected to see him sitting at a table, or pacing around the activity as he often does. But no. He was out on the dance floor in the midst of a huge group of kids dancing like a wild man--like everyone else...

Will he be able to do that every time? Who knows?

Frankly, no teenager is socially smooth every time!

Growing and learning are lifelong processes for EVERYONE--NVLD or no.

Non Verbal Learning Disorder and Social Learning from the Beginning

One aspecct of Non Verbal Learning Disorder that many folks find challenging is a lack of social fluency. Fitting in can be very tricky.



For my son this is an area where he is continually growing so I thought that I would (with his permission) share some of our experiences.

When my son was little--long before he had a diagnosis--he would have reminded you of Lt. Commander Data from Star Trek: Next Gen. He spoke in a sort of clipped way, he did not use contractions, and the timing of his responses in conversation were delayed.

Over the years this dissipated. People that we camped with every year remarked at one point that it used to be when you greeted Tom he would take forever figuring out who you were and why you were talking to him before he could answer. "Now," our friend said, "when I say hi, he says hi--it's great!"

Neighborhood interactions could be a bit tricky between his hesitant style and his very literal thinking. Another 4 year old (or more likely, 6 year old) yelling "I'm going to KILL you," would send my son running home in terror.

He was about 4 when I explained that 'exaggerating' means saying something much bigger than you really mean to make things sound exciting. I would make a big show of saying "I told you a million times," or "That was the loudest noise in the WORLD!" and I would compare flying bugs to birds, or airplanes.

Once my son got the hang of it he LOVED it. He thought it was so funny.

And the next time the kid down the street yelled at my son that he was going to KILL hiim, my son turned to him and calmly said, "Exaggeration." Since the drama was gone the kids pretty much stopped pushing that button.

And I learned that I could explain social things to Tom and he could get it.

Not long after that I had the opportunity to mention to him that crying makes mean people meaner. He thought that was just awful (and so do I) but he saved what he could of his need to cry for the safety of home.

Another fun lesson was puns.

At dinner when I asked him if he wanted to put cheese on himself he would answer in horror, "No, on my spaghetti!"

Or if I asked if he wanted me to put his coat on he would tell me that it wouldn't fit me.

Which would have been hilarious, but he was serious.

So I pulled out the primer of punniness, Amelia Bedelia, and 'splained it to him... again, once he caught on, he couldn't get enough. He graduated to the Xanth "Trilogy" by Piers Anthony by the time he was 12 for the sheer joy of it. Frankly, I think much of his enjoyment is because his first thought is still so literal.

Next up: Joining groups.