Following the Rules

I am in the process of washing and putting away my favorite jeans and capris - they're white, and it's now officially after Labor Day, so even though I love them and they go with virtually everything else I own, it's time to put them away till Memorial Day.  It's a RULE!

I have always been one to follow the rules.  Well, sometimes my heavy foot on the gas pedal gets the best of me, but much less so since the car I now drive gives me a continuous reading on the mileage I am getting from each gallon of gas.  I LOVE playing that game - and find the best results on the highway come in at around 67 mph.  In the city, it works best when I just coast, so I have become a much better driver and am usually within the rules even on this.

Teachers loved me, because I took so eagerly to classroom rules and regs and loved the rules of spelling and grammar, even diagramming sentences - it was so very orderly!   I don't remember having many rules at home, but I didn't really need them - I was born to please those in authority, and keeping Mom happy seemed a good thing to do for so many reasons.

And another thing about me - I have never taken much interest in politics or the goings-on of government officials.  I took a political science course in college, but virtually everything I heard in the lectures, or read in the assigned homework was new to me - almost like learning a foreign language.  "Liberal," "conservative," "progressive," "habeas corpus," "gerrymandering," "fascism," "corporate power"  --- just terms I memorized so I could do well on the exam.  Into my memory bank just for the semester and then forgotten.

My college years were spent on the campus of the University of Wisconsin-Madison, in the volatile 1960's - a venue known as a hotbed of socialism, followed by intense protests during the buildup to war in Viet Nam.   Some from my home town worried that I might fall into the clutches of the "commies" but I only worried about guys I knew who might be going off to fight in a foreign land, located way off somewhere on the other side of the world.   I focused mostly on my grades, with side thoughts of finding just the right man to marry.  That was how things were supposed to go, right?

So, how did I end up - some 50 years later - handcuffed and getting my mug shot taken in the presence of two not-so-friendly cops, cited for "unlawful assembly" in the state Capitol building?  And not once, but twice in just over a month!

Sometimes a person has to break the rules, take a stand, and put themselves on the line.  It took me many years to get to this point, but once there I see no turning back.  Things have gone terribly awry in my beloved home state and I have to do my small part to call attention to the problems I see.

I find it fascinating to watch as the powers-that-be keep changing the rules, without informing those of us involved just what is and is not allowed.  It reminds me of playing games with my grandkids when they are at that early age of four or five and - to them, at least - games are all about winning.  "No, Grandma, I forgot to tell you - when you use up all your cards, you can get more from the bottom of the pile."  "I don't have to pay for that property because I have landed on it twice now."  "You can't send me back, because I have only one man left."   Whatever it is, the rules are stacked against Grandma, who is, of course, always the gracious loser, trying in vain to teach lessons about the perils of cheating and that it's not about winning, but all about how you play the game. Ha!  So much for that one, Grandma!

Since March, 2011, every single weekday over the noon hour, a loosely connected group of people have been gathering in the rotunda of the state Capitol building in Madison, Wisconsin, singing songs of protest, songs for peace and justice, with lyrics cleverly rewritten from those songs we loved back in the days of anti-war or pro-civil rights days.

Our governor, Scott Walker, along with his Department of Administration and the Capitol police force tolerated our presence for a little over two years, with an occasional threat to have us removed and an occasional arrest for "disorderly conduct," or "obstruction" maybe.  Then things started getting really weird.  It became an arrestable offense to write on the sidewalks outside the building with sidewalk chalk.   Holding a sign or banner might get you arrested.  Could we really be facing possible citations just for singing?  How about curious visitors who stopped by to watch and listen - certainly THEY weren't subject to arrest?  (Oh, yes, on some days they were!  Along with working media folks. veterans, firefighters, teens, seniors in their 80's, a member of the City Council, a retired school board member, and even some of our beloved "Raging Grannies!")

 Individual singers and small groups of singers tried to meet with those in authority to find out what was outlawed;  a local state legislator met in good faith on our behalf with representatives of the "other side."  They walked out of the meeting when pressed to define the rules so we could continue to sing and not risk arrest.  Representatives with ACLU training started being present as observers.

The first day of the most recent crackdown on singing came on July 24, 2013, and it continues on an almost daily basis.  Shortly after noon the Capitol Police declare that the magic number of 20 participants has been reached and an "unlawful assembly" exists.  Anyone who does not "disperse" is subject to arrest.  In their minds, the most recent revision of the rules - "emergency" rules, as they are called - requires a permit for any group wishing to use the building. (Original cut-off number was a group of four; after a federal judge issued a temporary injunction on this matter, the number jumped to 20).   Without that permit, they claim to have the right to declare an event "unlawful" and start making arrests.  For many, many reasons, the singers say no permit is needed and the fight is on!  {More on why we sing, and why the idea of a permit is such a sticking point - here}

I was arrested on that first day, and again on August 28, when we remembered the March on Washington and Martin Luther King, Jr.'s "I Have a Dream" speech, which took place 50 years ago. How ironic that I found myself being cuffed and processed once again.

But I have a dream too, and it has a lot to do with compassion, fairness, and justice for all.  What is happening here in Wisconsin is frightening.  For the sake of my grandchildren, I have to break some of the rules so that their future is a more hopeful one, so the country they live in doesn't lose its way completely.  I don't like telling them how we are being treated by the police - who should be there to maintain peace and safety, not coldly singling out individual singers (or observers!) for arrest.  I don't like the fear I now feel whenever I see an officer in uniform.  I don't like the thought of court appearances and possible fines or legal costs.  But I love the people I have met at the daily Sing-Along, and I love the joyful act of singing.  It's been good for my soul.
                                                           

When you believe in something so strongly, and when you see wrongs being done, sometimes a person has no choice but to stand firm and keep singing!

Independence - It's a big deal!

Those of us who have been involved with Facilitated Communication since the early days are all too aware of the importance of independence in communication.  Sadly, our silent typing friends find that their words are often dismissed if they are in need of total physical support in order to get their thoughts out.  Amazingly, sometimes the skepticism is so great that even those who learn to type with no one touching them are subject to doubts.  Yes, they may need a trusted person close by, but how is it even remotely possible that the "support" person is guiding their communication with no physical touch? (And if you think it IS possible, well, I think that certainly warrants further investigation.  Is this mental telepathy we are talking about?  How exciting would that be?!)

So, many of our friends who begin to communicate with full support soon learn that independence is the way to go.  Some work diligently at it, while others express their frustration that they have deep thoughts and want or need a firm, steady grip on their hand or wrist to help them get to what they are really thinking.  It's hard work, and requires a huge amount of determination and practice in any case.  Some FC users, and often their facilitators as well, come to the ultimate conclusion that independence - at least in typing - is vastly overrated.  It's so much more satisfying to provide whatever support may be needed so that conversation and thoughts can flow easily.

But that's not really what I set out to discuss today.  I have in mind a different sort of independence that I think might be even more important to think about.  But it definitely IS related to all that is opened up once a person finds their voice through FC, or any similar method.

In those glory days of old, I was working primarily with young children, some as young as four years of age.  We'd start with typing their own name, then names of family members, classmates, school staff, etc.  Even the youngest could spell color words, or the names of familiar animals.  Most knew the days of the week, or words related to the seasons and weather.

And then, with practice, we'd gradually move up the ladder of complexity to more open-ended conversation.  If family members were present, and I would ask if there was something they wanted to say to moms, dads or siblings, one after the other typed I LOVE YOU or TELL THEM I LOVE THEM.  And the tears flowed freely.

Another common response when these early, young typers were asked if they had anything they wanted people to know was TELL THEM WE ARE SMART or some version of I AM NOT RETARDED.   Over and over again, this message was pounded out on letter boards or computer keyboards, so often that I am now expecting it every single time I encounter a person of any age who is new to communicating.  And I then apologize for myself and anyone else in their lives who may have underestimated their intelligence.  It's always a humbling experience, and their anger - if it's expressed - is well-founded.

I am mostly working now with young adults, and their messages are similar in some ways, but surprising in others - at least to me.  They too want to express love for family members and other care-givers, and they want everyone around them to recognize and respect their intelligence.  No surprise there.  What has caught me off-guard is how often an FC user has typed, with my physical support, that they have a dream of living on their own some day.

Please keep in mind that most of the people who use FC with me do not speak at all, and those who do have a very limited repertoire of spoken words, which may or may not serve a functional purpose.  In addition, they are all dealing with a variety of other limitations, mostly related to neuromuscular disfunction.  Their sensory systems are out of whack, they are "wired" differently, and they type about the ongoing struggle of living in bodies that don't do what they would like them to do.  They tend to need help and support in every aspect of their lives.

But, just like their siblings and others their age, they want to live as independently as possible.  As I hold their hand, wrist or forearm to allow their thoughts to flow, I put on my counseling hat and try to reassure them that none of us lives truly on our own.  We all have friends or family who help us in various ways.  We all need various kinds of help and support throughout our lives.

And, then I try to help family members understand that this is not rejection, not a lack of appreciation for all they have done for their child, nor for all they continue to provide.  But it is a normal state of affairs; and needs to be respected for what it is.

Moving out of the family home may not be an option right now, but it is always possible to focus on activities that could be done more independently - daily dressing or grooming tasks, household chores, getting around the neighborhood, taking public transportation, operating appliances, shopping, cooking, etc.  Even a person who appears to be a committed "couch potato" may be wishing inside that someone would push them to do more, or challenge them to take charge of their lives in new and different ways.

If you are a parent, sibling, caregiver, or just a person who cares, think about how you might help a nonverbal person raise their level of independence.   Look for ways to challenge them to do more on their own, providing needed support and encouragement along the way.  Even if the person in your life is unable to express this desire themselves, I think it is safe to assume they too want as much independence in their lives as possible.  In fact, I would consider this one of those "least dangerous assumptions."

The opposite - learned helplessness - is indeed dangerous, leading to stagnation, boredom, low self-esteem, and possibly a miserable existence.  We can do better!

Sometimes It Can Be Hard to Believe

Maybe if I tell you a little about two young people I know who are quite new to typing I can help set the stage for explaining how hard it can be to believe this is all for real - and also why I find it possible to believe all of it - and even more.

I have been doing this for over 20 years now, so I tend to forget how we all started out.  Then I run into the inevitable challenges to what might be happening here, and it all comes rushing back.  Let's talk first about M, a young woman nearing the end of her time in high school.  She's never really had academic programming, mostly because she seemed to have so many other needs ("functional life skills," "daily living skills" and of course behavioral programming) and her IQ score most probably indicated limited educational potential.  Oh, and she has very limited speech.  All of this is very typical of the young people I meet.

What is NOT typical at all is that she has excellent fine motor abilities - she writes, she draws, she ties her shoes and zips her jacket - and she can navigate even an unfamiliar computer with lightning speed.  She loves to type, but if no one is providing some level of physical support (resistance), her typing consists of what would be called echolalia if she were speaking.  It's the same with her writing - beautiful, neat handwriting - but all of it (and there are pages and pages of it!) a rehashing of what we have come to call "movie talk." 

She eagerly enters my office and sits down at the computer, ready to go.  I have my hand ready and most of the time she willingly takes the offer.  When I ask about the movie talk, she tells me it is NOT an effort to communicate (although I do believe at times she has attempted to use it that way) and she needs my help to get her own thoughts and ideas out.  With my support, her typing is much slower, but we are able to have a back-and-forth conversation.  I can either ask a question orally or type it and have her read it, she pauses briefly and then types her response.  As she types, she is carefully watching the computer screen and quickly pulls her hand away from mine to correct any error that may appear.

Let me repeat.  If she spots a typo, she INDEPENDENTLY and very quickly moves the cursor to that spot, hits the delete button and types the correct letter(s).  Then she takes my hand once again and we can continue our conversation.

Then there is S, a young boy (also non-speaking) who started out with all sorts of resistant behavior - running around the room, grabbing my glasses, trying to pull hair or pinch, scratch, etc.  This also has been a common reaction among many of the young kids I have worked with.  It's been enough to cause many others to give up on efforts to help kids learn to type - after all, it sure looks like they have no interest; maybe later in life - for now we'll continue with what we have been doing.  But when I was able to finally "corral" S into a position where he felt sufficiently supported,  while also talking to him calmly to let him know I believed in his abilities and intelligence, he allowed me to take his hand and he started answering questions from his mom and from me.    Just the other day, S seemed to put all of this together and realize he could use my support by his own choice and for his own benefit.  We were no longer struggling; he wasn't just conforming to what adults were asking of him; he was initiating conversation.  I had been holding his hand as his mom asked questions.  Then she and I started talking to each other.  S took my hand and added his own comments to what we were saying.

Again, I repeat.  He took my hand and initiated a comment of his own that fit right in with what was being discussed.

What M and S both type - with support - doesn't match well at all with the rest of what we see when we look at them.  They type in full sentences, with almost perfect spelling.  They sometimes type deep thoughts and feelings that seem wise beyond their years.  With little or no academic instruction how is this possible?  Believe me, I really can and do understand why it's all so hard to accept.

I can go way back in my memory bank for other examples of just what has caused me to become a believer.  I really DID start out with all sorts of skepticism.  I think we all do.  As much as we might want to believe these kids who don't talk might actually have lots to say, there is massive resistance to actually allowing oneself to "go there!" 

What has NOT worked in my experience would be situations where a child or young adult was put on the spot and asked to "perform."  For all sorts of reasons, these young people do not like being put to the test, and they can sense a skeptic no matter how well-concealed.

It really isn't often that one of them types something that is totally spontaneous and revealing of something I don't already know.  Very rare, yes, but it DOES happen.  I think of A from my early years of using Facilitated Communication.  He could talk, and in fact talked a lot, but always on topics of his choosing and never to express feelings.  One day his behavior was totally out of control, and I turned to typing to see if we could get at the problem.   He typed that his parents had been arguing, he was worried they might be considering divorce, and that he might be sent to a foster home.  I made an appointment for a home visit, where he willingly (almost eagerly) typed the same message to his mother, who was visibly surprised and then admitted there had been some tension, along with late night discussions when they thought A was asleep. 

A classroom game we often played also helped to validate what we were doing.  Starting with a set of ten word cards - picture on one side, printed word on the other - one student would leave the room with my para-professional and together they would pick one card.  That student would then return to the room and use my support to type the word, while I spelled it aloud and the others who could speak would try to guess what was being spelled.  We consistently scored right at 80% with this because there were five students most of the time, and J invariably chose deliberately to spell an entirely different word.  There's one in every crowd - and J was definitely our class comedian!    Various forms of "message passing" have been used in structured studies to attempt to validate the method, often with poor results. Again, I believe that is mostly due to the anxiety produced by any testing situation.  When presented as a game - in a comfortable, relaxed, even fun, setting - results are much better.

I have worked with others like M, who make their own corrections while typing.  And I have worked with some who can give me a nod or smile or point to YES to make sure I am understanding what they are telling us.  I have seen behavior deteriorate when we do not make the effort to understand what they are experiencing and perhaps most important of all, we have all seen dramatic improvement in overall attitude and behavior when these amazing young people find a way to communicate what they need/want/have to say!

But we continue to deal with skepticism and even resistance among family members, school staff, and others.  It seems too good to be true, too hard to believe - for so many people and so many reasons.  Attitudes that are deeply entrenched are very slow to change, and for far too long we have made dangerous assumptions about people with limited (or no) ability to speak.

We may be approaching some sort of tipping point and it can't come a moment too soon for all who have been so terribly misunderstood and underestimated.  What danger could it possibly do to give them the benefit of the doubt and accept that this might in fact be true?

Why I Do What I Do

It all started with an innocent question from one of the grandkids.  I think I have written before that they do seem to ask a LOT of questions. (Link here) And of course I love it.  The teacher in me is always eager to deliver just as much information and wisdom as I can whenever the opportunity presents itself.  Over the years I have had to humbly accept that these opportunities are all too limited.  They may be asking lots of questions, but they don't really stay tuned for much of the answer.  It pays to be quick and very concise!

So, the question was something like this: "Grandma, why do you do what you do?"  And as I remember the situation (details could be wrong - the memory isn't quite what it used to be!), the questioner was somewhat disappointed that I wasn't going to be available for something she had in mind for me to do.  I had another commitment, and it had something to do with that part of my life where I work with kids and young adults who type to communicate.

My short answer was that I really love what I do and get so much out of the time I spend with these very special young people - just as I love and enjoy my time with all of my grandchildren.  And, oh how I could go on and on talking about how important this particular experience has been for me - but she had already moved on and her next question was totally unrelated to the topic at hand.

It got me thinking.  I sort of stumbled into special education as my college major - there was a new program starting at the university, scholarship money was available, and I was struggling with both issues - what to declare as a major and how to pay for the rest of my education.  It was a perfect fit, but I had no idea of that at the time.  I was very, very lucky!   And then, once in the field, it was again fortuitous chance that led to the learning experiences that forever changed my life both personally and professionally.

I was a teacher for about 30 years, and loved it.  Well, not every single minute or every single day, but I can honestly say it was never the kids who caused me to wish I could stay in bed some days - it was always some other part of the job (those long meetings, never-ending reports, clashes with administrators who just didn't get it!).  And then I retired.  Still healthy, very happily married, kids all grown, and a growing number of wonderful grandchildren just waiting to be spoiled.  It's a great life!

But something was missing.  I had worked with some very special children who had taught me so much, and along the way many of them had used their newfound means of communication to ask me to tell the world how smart they are.  They had used my hand to support their typing and had spelled out over and over again, NEVER STOP TRYING TO GET MORE PEOPLE TO BELIEVE.

So, I am back in business (literally, since forming my own LLC a little over a year ago).  I have access to some office space where I now see "clients" for about an hour at a time, maybe once a week or twice a month, depending on their family's schedule and mine.  When not at the office, I am here at my computer, following stories of others who type to communicate and trying to find more ways to get the word out that these are some amazing individuals who deserve our respect and attention.

"Do they pay you for what you do?"  Ah, yes, she is well aware of how our capitalistic system works, and she LOVES having money of her own to spend. So, I answered honestly that I do get paid for some of what I do, but not all.  I have one young man I see on a regular basis just because I want to be a part of his life - as a friend, rather than a paid support person.  I serve on two different autism-related boards, because I feel I have something to offer, and certainly want to do what I can to support their great efforts.  I offer my services to train new facilitators at a nominal cost because I see how great the need is for more people who can provide this particular service.  I am honored to volunteer in a fascinating yoga program for individuals on the autism spectrum. 

And then, let me use this forum to try to explain in greater detail just WHY this all means so much to me.  I have been privileged to be part of a sea-change in the way we view autism.  The individuals with whom I now work (and have worked with in the past) could all too easily have been placed in institutions and removed from society for their entire lives.  I am convinced if that had happened they would indeed fit the picture we used to have of just how devastating the condition of autism was.  But they were lucky to be born in more enlightened times, to parents who wanted what was best for their children and were willing to fight for appropriate education and other services.  These particular parents can also look back to those who went before them and faced down the stigma of the "refrigerator mother" theory, and everyone who fought to close down the institutions.

A very few of us professionals were lucky in the early 1990's to learn about Facilitated Communication, and then had to be strong enough to stick with it through all the skepticism and controversy that soon followed.  There weren't many of us then, and there are even fewer now.

But there ARE more people with autism, and they all have stories to tell.  Because I do what I do, I can be part of their stories.  I work mostly with individuals who are completely nonverbal.  A few can speak, but are unable to express what they are thinking or maintain a conversation.  Thanks to FC, they are able to tell their parents what they want/don't want for Christmas, or what they like/don't like to eat, wear, do, etc.  The older ones are learning how to take charge of their own team meetings and direct their own lives.  Several of the young people I work with have expressed a desire to attend conferences and give presentations so they can tell people what it's like to have autism, be unable to speak, and be considered cognitively disabled when in fact you are really highly intelligent.  They told us that's what they wanted to do, and some of them are actually doing it.  We have formed a social group that meets monthly so they can get to know others who type to communicate, share their dreams and frustrations, and support one another in whatever difficulties they might be facing. These young people have come such a long way, and have taught all of us so much.  How many more are there just like them who might benefit from having access to a letter board, with someone supporting their wrist so they could let us know the depth of thought and compassion hidden inside?

How could I ever turn away from this part of my life?