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?

My love/hate relationship with computers

OK, I readily admit it, I am totally addicted to my computer.  And if I had one, I know I'd feel the same way about an iPod.  But it wasn't always this way.  Things like this sort of creep up on a person, without being consciously aware of what is happening.

A very long time ago, in some other universe, I had no use at all for the latest craze. In fact, when my school was excitedly announcing that computers had been generously awarded to all our classrooms, I wanted to say, "No, thanks!" --- I guess in a way, I did say something to that effect, loudly proclaiming to anyone who would listen that I didn't need more things in my already crowded classroom, I needed people, and preferably people who really cared about the kids who had been entrusted to our care.  I found it curious that various community groups and organizations frequently made donations of books, toys, adaptive equipment, and so on, but no one ever stepped forward to give me what I thought we needed most - qualified, caring, dedicated support staff!

On the home front, my dear husband also tried to convince me that a computer was just what I needed to make my life easier, choosing a rather strange example, at least IMHO (see, I have truly come a long way on this one!).  The selling point he tried out on me was that with a home computer I could catalog all my favorite recipes and then just print each one out as needed.  Yikes! At that time, I was teaching full-time and somehow managing to throw together meals for a family that included some six or seven kids (depending on the number of foster kids living with us at any given time) and often an extra friend or neighbor who happened to be there when we were eating.  While I had always loved collecting recipes, I no longer had time to look at or use any of them - I cooked by instinct and stuck with family favorites that I knew wouldn't go to waste.  Type recipes on the computer, then look them up, print them out and follow them?  Ain't gonna happen!

I can remember being told, at a different school several years later, that we'd no longer be receiving a daily attendance bulletin, since all information we needed would be sent via email, which we were encouraged to check at least once or twice per day.  I sneered at that one, nastily claiming that others must have a much easier schedule than mine, which of course didn't allow for such obligations in addition to everything else I was expected to do in a day.  I never did adjust to the loss of paper announcements, and missed much of what was going on in the building during those early months of the exciting "new" plan!

The first computer to enter my life was an old Apple model (2G, maybe??) and it surely would have become a dust collector in the corner if not for my friend "A" - a bright, overly active boy with autism who gravitated to this modern new piece of technology as if it were placed there just for him.  In no time at all, he figured out how to turn it on, insert discs, play every game we had available to us, everything except how to get things unstuck when he pushed keys a little too fast and things froze up.  As might be expected, I had no clue what to do in these situations, but I had to learn fast - "A" had no patience at all for computer "down" time!  So, I learned just as fast as my reluctant, aging brain would allow, and "A" also had some learning to do - how to share the things he loved, because a growing number of his classmates also found the computer fascinating and enjoyable.  All of them were much more cooperative about doing the work I asked of them, if computer time was the reward.  And amazingly, with kids involved in educational games on the computer, the lack of qualified support staff in my classroom was no longer quite so serious. 

It probably was the computer that set off that light bulb in my head - to match what was already implanted in my heart - that these kids who had been placed in my classroom because of very low IQ scores (less than 50 in some cases!) and who had been given labels such as "cognitively disabled-severe," or CDS, were actually very intelligent, demonstrating on a regular basis that they were a whole lot smarter than their teacher when it came to modern technology.

And so it began.  We got that home computer, also an early Apple model, and during the time when I was out of work, collecting unemployment, I started on a new journey, at my keyboard every day, putting my thoughts into words, writing the book that was finally published in 1999.   I never did input any recipes, and I no longer do much of anything in the way of cooking.

But now I cannot imagine life without technology.  I check email regularly throughout the day - on my desktop, laptop, or smart phone (it is indeed a whole lot smarter than its owner, but I am learning!), I keep up with news, family and friends on Facebook and Twitter, I waste hours on a couple favorite games; I am an addict and I know it!  When Mercury goes retrograde and accounts get hacked or passwords aren't working, I quickly switch to panic mode, accessing helplines or calling tech support in some foreign land.  Whatever it takes, I will do - I must get reconnected, and soon!  And just like "A" all those years ago, I have had to learn to share, because my husband has found a few things HE likes doing on the computer.  Oh, and by the way he's the one doing the cooking these days.  How lucky I am!

It's almost that time of year; maybe Santa will bring me an iPod.  What are the chances???

Asking Questions

A favorite high school teacher of mine had more of an impact on my life than I realized at the time - and I am guessing the same would be true from her perspective.  It was a Catholic school and she was a young nun (though we never really knew their ages, of course) teaching Honors English.  I loved the reading, the writing, and all the wonderful discussions we had.  Most of all, I loved the lesson she taught that has stayed with me for my whole life:  Never be afraid to ask questions; in fact, not asking is the more dangerous route to take.

I've thought of this lesson so often, and it has gotten me through what could have been difficult times in my life.  I have asked questions most recently about what I was taught in school about history and religion, and I have asked many, many questions about what I was taught in my college classes about my chosen career of special education.  All worthy topics for future blogging.  Today I am thinking about kids and questions.

From the time they can put two words together, kids ask questions.  In fact, long before that they catch on to the game of pointing to something so that we can give them a name for it.  Somewhere around age three, those never-ending "why" questions start - and go on and on and on till their rapidly growing brains are satisfied.

It doesn't stop when they leave toddlerhood.  My older grandkids are constantly asking me why I do things (who knows?!?) or what a word means when I use a term or expression that isn't familiar to them.  Asking questions is part of who they are and a critical part of how they learn.

For kids who are nonverbal, or have limited ability to speak, asking questions is often NOT part of what they do.  Their brains are growing also, at least as fast as those who can talk, but they have to find other ways to learn.  Based on what I have learned from so many of them, I can safely say most are very good listeners. We might think they are paying no attention at all much of the time, but we would be so very wrong.

Many of these young kids are drawn to visuals - pictures, TV, computer screens, iPads, books, the printed word in any form - and may even have what we think of as photographic memories.  They take all this in - everything they hear, everything they see - and it's stored inside, maybe forever.  (And maybe some day we'll better understand just what is going on in these incredible brains!)

But a critical piece of the typical learning process is missing.  These kids have no way to ask us questions to clarify the vast amount of input their brains are receiving.  We know their neurological wiring is different in many ways, and for most of us that is about as far as our understanding goes.  We accept that and try to help them find ways to process information and deal with the world around them in the most successful way possible.

What if we could help them ask questions?  Obviously this would help with learning basic academics.  Amazingly, many of the kids I know who are on the autism spectrum have relatively little trouble learning to read and spell or do basic math.  When I have asked them how they learn, the most common answer has been, "I just knew it."  So, at least for these kids, they have already found a way around our more typical methods of teaching/learning.

But I think about the many kids I have known who have problems with "behavior."  (I just have to put that in quotes because one of the many lessons I have learned over the years is that it's really not fair to lump everything they do in this category, mostly because it has such a negative connotation.  If we make the effort to understand why they do the things they do, it might make a whole lot more sense and not be so objectionable or inappropriate after all).

One of my all-time favorite - and most challenging - students was a boy who was quite verbal.  He actually DID ask questions.  In fact, he asked questions all day long - about every sound he heard (most of which I had not heard), about the lighting in the hall, about the schedule for the day, about the cars in the parking lot (he knew which ones belonged to every staff member), about the lunch menu . . . .   But he wasn't able to ask the hard questions that were simmering inside.  Once when he went through a long spell of rather troubling behavior,  we were able to use Facilitated Communication to get at what was bothering him.  In a very emotional visit to his home, I facilitated (in more ways than one) a discussion between him and his mother.  He shared with her that he knew his parents had been arguing about him (she thought they were doing it out of his hearing range) and he was afraid they were going to get divorced and send him to a foster home.

Another of my more talkative students --- whose questions usually related to things in your home:  What color is your refrigerator?  How many laundry baskets do you have?  ----  started getting sick every day at school.  It was usually either a headache or stomachache that he reported, never anything that could be verified  like a fever or rash.  After a few too many false alarms where we sent him home only to learn that he was  fine once he got there, I made a greater effort to use the letter board and FC to get at just what was going on.  This very sensitive young man, only about seven years old, was worried about his mother, who was dealing with depression at the time, and he felt he needed to be at home to keep her safe.

How much are these kids, and adults, dealing with that we know nothing about?  How often are we misled by what they actually say - or their demeanor or body language if unable to speak?

How much better their lives would be - and ours too - if we could find, and then regularly use, an effective means of communication so they can ask the questions that are swirling around inside.

Grandma Char Goes to Summer School

So, how does a retired teacher spend her summer?  Well, maybe some time in summer school will feel just about right!

I had a wonderful opportunity last week to attend the Youth Leadership Forum held on a nearby college campus and designed to help teenagers with various disabilities learn about self-advocacy and leadership.  My role was to support my young friend Nate (not his real name - we'll wait until he's ready to share his whole story publicly) who does not speak, but does type to communicate and does have a lot to say!

Nate and I had started typing together several years ago, but once he entered high school - and was having a successful experience there - our time together was very limited.  So we spent a couple hours the week before "summer camp" getting reacquainted and brushing up on our typing rhythms.  All went well and he seemed eager for the experience.  I couldn't answer all the questions he asked, because I had never attended this forum and really didn't know much about what to expect.  I warned him that even though he really wanted to know, I was reluctant to give answers because I could be wrong and that might cause some disappointment.  I did tell him I was quite sure there would be frequent breaks and he would be allowed to take any additional breaks he might need.  I thought it was safe to say there would be a variety of fun activities planned for the week.  And then we tackled his most pressing concern:  How would he fit in?  He seemed worried that his inability to speak would be a problem, and he might not be a good match for the group.  I reassured him that if he would be able to participate by typing I was very sure he would be raising the awareness level of everyone involved - which just so happens to be a major part of his personal life dream.

As it turned out, I was wrong about all those "fun" activities - they probably happened after my shift ended (usually around 3 or 4 p.m., when Nate's dad took over for the remainder of each day/night).  We were essentially in a large group (about 20 participants and almost as many mentors/counselors -all of them former participants in the program) for the entire day, seated around large tables, listening to various presentations on topics such as self-advocacy, accommodations in college, living on your own, federal/state laws regarding disability, etc.  Yes, there were breaks, but not as many as I had expected and usually quite short.  There was lots to learn, and work to be done!

But I was oh-so-wonderfully-right about Nate's impact on the group.  He amazed me by his ability to remain with the group the entire time, taking only the same breaks as everyone else, and then eagerly returning to hear more.   Whenever I checked in with him by typing on his iPad to ask how he was doing, he invariably typed back that all was well and he was happy to be there.  He amazed everyone else by his typed comments and questions.  Every time when Nate finished his typing and I raised my hand to indicate he had something to contribute to the discussion, we had the complete attention of everyone in the room.  Several of the more experienced mentors made a point of sharing with us just how impressed they were with what he had to say and what a hard worker he had been all week long.

For the most part, Nate needed prompting when a speaker finished and the group applauded their comments.  He'd manage a single clap or so and that was it, but his typed comments always indicated he had been listening and really did appreciate all that was being presented.  There was one instance, however, when he spontaneously clapped (several claps this time!) and even vocalized quite loudly - all on his own - and that was when a speaker asked the group if they found it offensive when others use the dreaded "R" word ("retarded" or "retard").  This entire group of amazing young people with all sorts of labels and challenges were in loud and clear agreement that this is the very worst thing they have to deal with.

I learned a lot last week - mostly a huge new respect for the young people who participated.  And I know every one of them - Nate included - grew in their own knowledge and self-confidence.  They will find ways to change the world around them, each in their own way.   We are a better world because of them.