Saturday, June 27, 2009

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.

Tuesday, June 23, 2009

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.

Tuesday, June 16, 2009

No Drive Through Life and Wrongful Birth

I have blogged before that many years ago when I was single, years before my daughter was born with Down syndrome, I believed--and told people--that I thought I would be fine if I ever had a child with a physical disability, but not a cognitive disability.

I have always pictured God hearing my little declaration and rubbing his metaphysical hands with glee. I picture God knowing that that that thing I dreaded would be one of the best gifts of my life. I picture the anticipation of my being surprised by joy I could not even imagine making Him smile the way I smile about the Christmas presents I have hidden for my loved ones...

When my daughter was born we had a few hours of shock and I was given a quick lesson on disability philosophy by a dear friend of mine who has CP, and another by the guy who answered the phone for our local DS group whose first word to me on hearing our news was, "Congratulations!"

Then we were on our way.

Having our third child meant all the joy and sleeplessness any new baby brings to a family.

That she has Down syndrome meant that and so much more. We were introduced to the parallel world of disability and all of the amazing folks who live there, we got to learn about and appreciate the hundreds of intricate steps involved in any piece of human development, we had to be resilient, we had to be creative, we had to learn new skills, we had to be intentional and 'attentional' about all manner of things we never even knew existed before.

Some things were easy and some have been very difficult. But I have indeed learned that things that are easy are often not as valuable as the things/relationships we must invest in.

We couldn't have a drive-thru life--we experienced the slow-food alternative. We have layers of complexity and relationship that have meant we must always engage with our life and as Robert Frost wrote, "That has made all the difference."

These opportunities for learning and growth have enhanced the lives of our whole family.

Beyond this, the things I have learned have given me the opportunity to give back--to share the things I am learning with others along the way. I have learned advocacy and public speaking and gained a sense of purpose that I never had before.

My husband and other children have benefitted as well. The common purpose of parenting a child with a disability has enhanced our family life on all fronts--the fact that Jenn is a great kid makes it fun too!

My older children have a sense of justice and an awareness of social issues and have had the opportunity to speak out in many forums that other kids their age have not. They have both taken an active role in helping Jenn learn and grow and the responsibility and maturity they have developed is already helping them at school and work as the begin to make their way in the world.

Last week a woman I met commented to me about my daughter with Down syndrome saying, "Well, sometimes we don't get the life we ask for so we just have to make the best of things..."

"Actually," I replied, "I have a much better life than the one I asked for--I wouldn't change a thing!"

She seemed very surprised.

I went home and told my kids about my conversation.

My daughter said, "How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!"

I laughed because, to tell the truth, so do I.

Now, I had this all written and that line was supposed to be the end until I read this article.

A family in Oregon is seeking big bucks from the doctors who did not diagnose their toddler's Down syndrome pre-birth. They state unequivocally that their daughter has changed their life and they would have aborted her if they'd known.

This article made me physically ill.

First of all I feel heartbroken for the family whose experience with their daughter has not been as positive as mine.

Secondly, it frustrates me that this story has made the news. My story about the positive impact disability has had on my life will never have the credibility with our ableist society as this family's story will because our society fears disability and WANTS excuses to opt out of dealing with disability and those who have them.

I know families whose experience with their typical children has been extremely unpleasant as well for various reasons, this isn't necessarily a disability issue, but disability will undoubtedly be blamed.

Thirdly, I am desperately saddened for that little girl and her siblings growing up in a town that knows that her family would have aborted her if they'd known her. Who will want to babysit her or be her friend? What will kids say to her and her siblings on the playground? And how will this stated need for perfection affect hers and her siblings' sense of security with their parents? I can't imagine any amount of money that would be worth the cost.

Picture from here.

Sunday, June 14, 2009

Book Review: Disability is Natural

One of my favorite disability books of all time is Disability is Natural by Kathie Snow. I have referenced it many times on this blog, but have never reviewed it.

Well, Kathie spoke in my area recently and I was there. I had lost my copy of her book some time back so I picked up the new, revised, 2nd edition (and had it autographed, naturally!) and read it again...

I still love that book!

The book begins with a primer about disability through history and then goes on to discuss disability today, and then on to ways to change things for our own kids for the future.

Kathie applies what she calls Revolutionary Common Sense to life with a disability in our society from birth through adulthood and shows how the sub-standard, sub-poverty level, un-real lives that are a reality for so many folks with disabilities are created. She de-constructs EVERYTHING--things we hate like institutional programs, and things we love like early intervention and therapies, and everything in between.

Kathie believes that "It is just as natural (for human beings) to have a disability as it is not to," and as a result believes that the structures that exist to 'fight' disability, or accentuate inability or difference in our society must be replaced.


She advocates for replacing everything with a positive belief about disability and creative ideas for building "real lives" for all people with disabilities IN our society.

She teaches about natural supports, a belief in Assistive Technology as a FIRST resort to give people mobility or communication--not as a last resort turned to when people have been years without them. She teaches about person-first language and the idea that we are not aiming for 'independence' but for healthy interdependence.

Much of Kathie has written is hard to read because it makes us look long and hard on our ideas about disability--some of which we truly cherish... and if you envision a coddling, segregated life for your child, or if you need to be told that every recommendation your district makes will be PERFECT for your child, this book is not for you!

I don't agree with every idea in the book, and have made decisions now and again for my daughter that I know Kathie would not.

Yet, I LOVE this book.

I NEED this book.

I find it challenging and clarifying and energizing.

It is way too easy to drift away from my beliefs about my kids because of professional input, school district's capacities, the challenges of everyday living, etc. I aim to compromise and end up being compromised--and I often don't even realize it has happened. This book makes me think, adjust and get back on track--for a while!

In her seminar Kathie told a story about her son, Benjamin who has CP. When he was little he did tons of therapy and the therapists said he should not get a motorized wheelchair because if he did he would never walk.

Kathie had also made friends with disabilities through her state's Partners in Policymaking program and one man with CP told her over and over to get him a motorized chair so he could LIVE.

She finally listened to her friend when Benjamin was 9. She said that afternoon he went out in the backyard to play... by himself... for the first time in his life.

That made me cry.

She said he still can't walk, but doesn't think he would have anyway--and she thinks that is fine. Inability to walk is not a problem, lack of mobility is.

As for Benjamin, he's gotten to zoom along with his friends anywhere he wants since he was 9. He is now going to college. And he thinks that if a trade was made, it was a fine one.

This book is challenging in the extreme, and absolutely worth every cheerfully prickly moment!

Read it, I dare ya!

The photo above has me at the top, fellow NY Partners grad Jenn Machucki on the left and author Kathie Snow on the right. To read an article by Jennifer Machucki click here.

Saturday, June 06, 2009

To Battle or Not to Battle is NOT the Question

The conventional wisdom about life--and about disability--is that everyone should "pick their battles" in order to save energy.

On the surface this seems like reasonable advice, but some people interpret this statement to mean that the two choices available are DISENGAGE or WAGE WAR.

It's just not that simple--or that drastic. And since whole groups of people (including yourself!) will have to live with the consequences of your approach to advocacy, some things need to be considered.

To start with, the phrase should be "Pick your strategies," not "Pick your battles."

There is no escape hatch. Alice in Wonderland could escape down a rabbit-hole to an alternate universe, but that option is only available to Alice and bunnies--the rest of us need to live here. (Which is really ok, have you READ Alice in Wonderland?? Wonderland is a VERY strange, unsettling kind of place!)

This being the case, we need to make our home here--in our schools, and neighborhoods and communities.

We are home-making. Not escaping. Not battling.

In this light there are several things to consider when approaching situations.

To begin with, conflict is normal. People are different and have different viewpoints. Conflict is not scary or negative, it's a sign that you're alive.

And alive is good.

The trick is not to avoid conflict, but to manage it.

So, where do we start?

Step 1: Evaluate: Does the issue matter? Don't waste your energy managing issues that don't matter.

An issue doesn't matter if it has limited or superficial impact, or if it will go away on it's own in a reasonable amount of time. I put matters of taste and style in this category most of the time...

Kids' hairstyles don't matter. Kids'clothing styles don't matter (though modesty and cost and a few other things do!)

I think it was my dad who told me that adolescence and snow both go away on their own if you leave them alone long enough... I don't always remember this, but I try.

My kids (and husband!) eat their eggs with ketchup. I think this is disgusting. Yet, it does not matter. I will tease my kids and they will tease me about this for fun, but not one volt of my energy will be devoted to changing their egg-habits. (Though if they WANTED to change, I would be supportive! :)

If it doesn't matter, it doesn't matter. Relax, enjoy, go swimming!

Step 2: If an issue does matter, it is WORTH addressing.

Any un-managed or unresolved conflict causes more and more and MORE conflicts to deal with (my friend believes there is a mathematical formula for this. I'm sure it involves exponents... if someone finds one let me know!) For example, if you don't address the aide that treats your child dismissively, pretty soon lots of people have learned that behavior from them... YUCK.

Beyond this, even though it can look scary, managing conflict is a valuable process. Working through differences with people builds your relationship with them, earns respect, builds your own skills, and it makes the situation you are living in BETTER.

Talk about win-win-win-win-WIN!

Step 3: Conflicts are resolved (almost always) by negotiating, not battling--and as Ruth at Wheelie Catholic points out, not by arguing (who says there's no such thing as a psychic friend?!)

You negotiate, discuss, use laughter, ask questions (read my posts on Unexpectedly Effective Advocacy Skills here.) You hold Crucial Conversations and you Get Past No...

Managing conflicts that matter through negotiation is like caring for that swimming pool. It can be hard work, there is a definite process to it, it can get a bit dirty, AND it builds a healthy environment for you to enjoy.

If a pool owner quits tending the pool mid-season, or blows up the whole mess in a fit of rage, things get awful pretty fast and no one gets to swim.

Step 4: Finally, some issues matter a lot and cannot be resolved through negotiating alone. Sometimes it is necessary to move from Crucial Conversations to Crucial Confrontation.

These problems pop up relatively rarely, and when they do you MUST respond accordingly. It becomes time to 'pick your battle.'

When you must battle, strategize--a temper tantrum is not a battle plan. Neither is wishing or whining.

Get help, commit to the process, arm yourself with information, allies, and tools.

And. Win.

So you can get back to poolside!

Picture from here.

Thursday, June 04, 2009

Inspiration and a Call to Action

My daughter introduced me to this song from Ragtime last year. My son heard the following quote in History this year and thought I should share it with you:

"I have pleaded your case not in the tones of a feeble mendicant asking for alms but in the thundering voice of the captain of a mighty host, demanding the rights to which free men are entitled." John Llewellyn Lewis

Now, call your representatives (in fact, call your senators too!) and tell them that you can't reform healthcare without reforming longterm care.

Tell them that the bias toward funding institutions INSTEAD of community-based care options is more expensive, prevents the will of the customer from weeding out non-competitive, outdated and undesireable services, keeps the disability community segregated and contributes to the high unemployment rate of people with disabilities since living in institutions eliminates many opportunities. And at times this bias keeps people with disabilities in situations where abuse is rampant. (Read this article to learn more.)

Today was a call-in day for the House of Representatives, for some in the west there is still time to call--for those in the east e-mail, visit or call tomorrow--a lot of calls today would have been great, but voices raised at any time have more impact than silence on important issues.