A New Inclusion Experience

This is a story from 30 years ago, still filled with so much joy and sorrow that I almost can't find the words.  Maybe this is another lesson for me, one of many still being learned.  Just this week, I met with L, age about 30, who has come a very long way in his ability to use typing to bring about changes in his life and get his feelings out.  He was full of smiles, with what appeared to be a calm, relaxed body ready to answer our questions or share thoughts of his own.  But it didn't go that way, and in the hour we spent together he actually typed very little - just enough to help us understand that he was simply too full of mixed feelings to get the words organized enough to type them out. His earlier school experiences were a partial cause of his obvious distress, with typing never being included as part of his school day, and his intelligence never being recognized by teachers along the way. Sometimes it can be hard to find the words to describe your feelings.

My first real experience with inclusion in a regular elementary school had gone quite well, but then it happened that the particular school building needed "our" room for other purposes in the coming year, and we learned that we'd be moving to another school, another district nearby - where they happened to have a room available.  We took our final trip in the tan van to visit the new school - checked out the lunchroom and the playground, met a few of the folks who worked there, and decided we could make the best of things and find lots of good in our new surroundings.

We left behind the tan van, along with many staff members who had become good friends and strong advocates - the school secretary, the custodian, the only other special education teacher, and several regular education teachers who had made us feel welcome and at home.  I paid little or no attention to something else that I was personally leaving behind, something that would become a serious problem in a very short time.

I had been employed by the county for the many years I worked in the special, segregated school, and I was now going to be employed by the new district.  I became, after many years of teaching, a "probationary" teacher, with virtually no protection for my professional status.  I knew this, but I was certainly not worried. What could possibly go wrong?

As the new school year started, we were now in the district that was the home district for most of my students. There were several other special education classes already in that district; we were again located in a room that was right in the middle of a busy hallway; and the elementary level teachers were a very experienced, very caring group of educators.

About half of my students were able to attend regular classes for much of the day, with little or no extra support.  The ones who needed more support spent a greater part of the day with me in our room, but we also had more than one paraprofessional who could provide the help they needed when they did go to regular classes.  

This is where I was teaching when I first learned about Facilitated Communication (FC).  Since all of my students at that time were able to speak, and most could even write, it didn't seem at first that FC would be relevant, or helpful in any way.  Just a reminder - this teacher, who was at the time a brand new grandmother, had a lot to learn.

The local newspaper did an extensive story about what was happening back at our special school --- where so many of the nonspeaking students who had been our friends while we were there had finally found a voice through spelling on a letter board.  I shared the story and pictures with my students, and they were fascinated.  

We established a routine in our classroom, and as time went on also established ourselves as an integral part of this new environment.   And then one day, I tired using FC with just one of my students who was struggling to give an answer to a question. The support I provided to his hand allowed him to slow down his thinking process as well as his bodily impulses, and he found a way to successfully get his words out on the letter board.  Others were very interested and eager to give it a try as well.  

Before long, there were five students regularly choosing to use FC to answer questions both academic and emotional in nature.  We were having a great time, and one teacher in particular approached me to say that he didn't really know what we were doing in our room, but he sure had noticed a difference in my students when they were in his art class or in the hallways of the school. 

Gradually, I was able to increase the amount of time these five students were able to spend in regular classes, and thus make inclusion even more of a reality.  But some started to pull back; they wanted me with them in those classes so they could truly participate and show others how much they were understanding and learning when they were exposed to the "regular" curriculum.  

We did our best to make this work, and were just finding our groove, when PBS Frontline aired a devastating attack on the new phenomenon known as Facilitated Communication ---  essentially dismissing the method as a dangerous hoax.  This was followed by similar segments on all of the major TV networks.  I was immediately ordered by the parents of one student to stop using the letter board or FC. More quietly, school administrators started paying attention to what I was doing.

By the end of the school year, I was forced to resign, in spite of strong support from all the other parents, most of the teachers, and the teachers' union.  The truth was that as a probationary teacher I could be dismissed for virtually any reason.

It was an extremely painful departure, but I had no regrets about standing my ground and refusing to stop using FC.  I had found the courage I needed, and I had learned that administrative support can make or break a teaching situation.  I was also comfortably sure that that the parents who supported my efforts would never again allow their children to be seen as intellectually deficient. I swallowed my pride and joined the ranks of the unemployed for the first and only time in my career.

Unstuck (We Hope) and Back on Track

This is probably a good time for a couple housekeeping details, starting with an apology to anyone who is a regular follower of this blog, or who may have tried to post a comment or become a "friend" of the blog.  My techie skills are not as sharp as I might like, and in all these years I have not figured out how to make the site more user-friendly.  I generally post on both FaceBook and Twitter whenever I publish a new blog, but that isn't much help to those of you who are not on social media.  If someone has a suggestion to help out with this, it would be much appreciated.  Or, if you have additional comments or questions, please do email me at:   crbrandl777@gmail.com

One unresolved problem has been that links I have inserted into the blog postings only seem to work for a short period of time.  From now on, I will try another way to provide these links.

And then, when I started this blog, I was thinking it would be a chronological story of my journey as a teacher, as well as a grandma, and most recently a retired teacher still working part-time doing something I love (and now a great-grandma).  But, alas, my brain doesn't work that way, and there have been so many detours and side stories that any such order is long gone.  I have always been an abstract-random sort of person, and offer apologies once again to those of you who might prefer a little more order or structure.

And now, moving on. 

My personal history with special education and the movement toward inclusion has had an uncanny similarity to what has been true of the field in general, at least here in my home state of Wisconsin.  Sometimes it seems things were just meant to be - and I have been blessed to be a part of the progress we have experienced.  Have I mentioned that I was born in 1943, the year that Leo Kanner was credited with first describing what we know as autism? How's that for synchronicity?

I stumbled into a brand new college major, mostly because I was always trying to figure out how to afford the next step in my education.  For all of you who are much younger, it might be hard to believe that this was difficult at a time when tuition was a mere $150 per semester.  But it was!  In the middle of the 20th Century, schools were not required to provide an education to children with disabilities, although some had programs that were being taught by kindhearted teachers who were willing to give it a try.  Somewhere around 1964 (Was this maybe part of the Great Society?) funds became available to train teachers at the university level in the area of Special Education.  I applied for a grant and was one of three students accepted into the inaugural program at the University of Wisconsin.  When I graduated with my M.S. degree and Special Education certification n 1966, the three of us had our pick of schools throughout the state who were looking for people just like us.  

My very first teaching job was an elementary class for the "educable mentally retarded" (EMR) and we started out in a church basement room just a block away from the elementary school.  See link below for a description of that assignment.  Suffice it to say, we were not being "included" in any way at all, even once we were moved into the regular school.  

Along the way in my education, I spent time as a volunteer in a residential facility for kids with significant disabling conditions of great variety.  Most were confined to cribs, and those who were mobile spent most of their time in a stark, virtually empty day room.  There was no educational programming and no opportunity for inclusion of any kind, just relative safety, regular meals, and a clean bed to sleep in.

I also helped out in some classrooms that were contained in regular public school buildings.  Those programs at that time tended to be entirely self-contained, and the students, for the most part, would be labeled "Learning Disabled" today.  The curriculum was essentially a watered-down version of what was being taught in the regular classroom, and these kids spent no time at all with "regular" kids.

You may have heard statistics for the number of kids with autism, starting at about one in 10,000 --- most likely in the mid to late 1970's.  That is about the time I first became aware of the condition we now know as autism, with current numbers running at about one in fifty. 

The 1975 "Education for All" act opened schoolroom doors for students of all levels of intellectual functioning as well as all levels of need for support and accommodations, later known more popularly as IDEA (Individuals with Disabilities Education Act).  In yet another coincidence in my life, I started working at almost exactly that time in another residential facility - one specifically designed for children between the ages of six and 18 with severe autism and/or childhood schizophrenia.  It broke my heart to think these kids weren't home with their families, especially when I realized that many of the families rarely came to visit, and the kids went home for a visit even more rarely.  But they were by far the most challenging students I have ever had the privilege to know --- and to learn from.We tried to provide something in the way of educational programming, but the main emphasis was on managing behavior.  All we had to offer in that regard at that time was medication (lots of it) and some variation of "B-Mod" --- our shorthand for behavior modification, using rewards and punishment (way too much of that).

By 1980, I was teaching in what is best described as a "segregated" school serving kids from across our county, between the ages of six and 18.  Once again, some of the students with learning disabilities were getting watered-down academics, but now they were joined by kids with some very significant needs who were getting mostly therapy and help with basic needs, with something new thrown in - functional life skills.  A large room in the school was converted to a fully furnished apartment where kids could practice things like setting the table, making a bed, sorting silverware or folding towels.  As a busy mother in my off-duty hours, I found myself wishing that my so-called "regular" kids at home could learn to do some of these things. But I also had to consider that most kids did not learn these tasks in a school setting.  It didn't help that many of them had significant motor impairments making these household tasks almost impossible for them. Obviously, there were still no opportunities for inclusion.

I started to question the value of what we were doing, becoming more aware all the time that we were warehousing these kids in a rather restrictive learning environment. Certainly some of them --- maybe all of them --- deserved a chance to be around typical children their own age.  Once I started voicing my doubts it wasn't long before I was challenged to put my money where my mouth was - and I was moved out into the real world with a group of  six students with autism, Down syndrome, and usually mild/moderate/severe "retardation" thrown in based on IQ scores.

Finally, we had some hope of being part of a regular school environment.  Many great, and some not so great experiences were to follow, and of course my education was just beginning.  

For more reading:

http://grandmacharslessonslearned.blogspot.com/2009/03/special-education-in-early-years.html

 http://grandmacharslessonslearned.blogspot.com/2011/04/autism-my-early-education.html

 http://grandmacharslessonslearned.blogspot.com/2018/08/thoughts-about-inclusion.html

 http://grandmacharslessonslearned.blogspot.com/2021/10/my-life-as-behaviorist-total-fail.html

http://grandmacharslessonslearned.blogspot.com/2021/10/my-life-as-behaviorist-total-fail.html

 

Getting Stuck and Then Unstuck

I seem to have hit a long spell of writer's block. I think I know why. With all that is going on in the world, and being the news addict that I am, it is all too easy to get buried under all the bad news. In an effort to stay positive, I have tried avoiding negative stories of any kind. But it turns out that I have one or two not so pleasant stories to tell, and I don't seem to be able to go forward until I share them.  If you personally choose to wait for the happy stories to return, I will certainly understand.

For some time now, I have been thinking about endings, and unfortunately most of them have been sad. One of my mom's favorite sayings was "All good things must come to an end." I think she was trying to help me over moments like when the parade was over, or we put away the holiday decorations. I was not the easiest child to console at such times, as I recall. Things can end with a bang or a whimper, and in my career as a teacher, and especially when supporting folks who type to communicate, I have experienced both.

The easiest way to end a teacher-student or facilitator-typer partnership --- at least for me --- has been when one of us has moved away.  That was always sad, but it somehow seems natural, something to be expected in the normal course of  life.  Families move, teachers get reassigned, students move on to a new school, etc.  As a good friend reminded me many years ago when a favorite student was moving to a different city with her family, "There will always be more kids who need you."  

The hardest  for me have been the instances where a non-speaking individual has used Facilitated Communication to report some type of abuse in their lives, and either the school or the family makes an abrupt decision that there will be no more contact between the two of us.  Thankfully, this has been a very rare occurrence, and I will not be discussing these situations to protect the privacy of everyone involved.  It probably goes without saying that these were very painful experiences that I will remember always.

I don't know whether to consider the pandemic shutdown a "bang" or a "whimper" experience, but it certainly did bring an unexpected end to much of what I had been doing ever since my retirement from teaching. On Friday the 13th of March, 2020, I met with two young men for about an hour each. "T" was the first, and we were using extra precautions (masks and gloves) so we could have an almost-normal typing session.  T was obviously aware of what was in the daily news reports, and obviously concerned about my welfare.  This is what he had to say:

"I might make you get it. Please help lots of people get over their fear. I might be more informed but I still have lots of fear.  Please help more people know how important it is to be careful. I just think fear is not healthy.  I think people have good sense.  How can I be more careful. Please be more careful.  You help me very much."

And then I met with "R", who managed to sleep soundly for almost the complete hour we were together.  At the very end, he woke up just enough to type:  "Please please be more careful I don’t want you to get it."

At that time, I was meeting with about ten different individuals on a regular basis.  Some of them I have not seen since then; there were no goodbyes, no parting words, and little or no updates on how they are doing.  Others are part of my life once again, now that we are all vaccinated and feeling safer about meeting.  For those who have a communication partner in their lives, it is much less distressing to let go, but when I know that some no longer have access to FC, or any other means of communication, I am haunted by thoughts of what their lives are now like. 

One amazing young woman had told me via typing that she dreamed of an apartment of her own, maybe with a roommate, and a career that involved drawing cartoons or illustrating books. We met regularly for several years and then she had a psychotic break. I visited her in more than one hospital setting and in more than one "safe house" after she was discharged.  But we never typed together again.

An amazing young man - also after several years of regular visits - came to my office one day with his support worker, sat on the floor and started to cry.  When I was finally able to coax him to do some typing he told them that he would never be seeing me again. I tried to reassure him that all was well, but I was acutely aware that his school days were ending and no one had informed me of what the plans were after "graduation." It turned out that he was right.  I have not seen him since that day and never did hear anything from his family.

I hope this link works for you.  It is my story about three very special senior citizens who found their voice through typing later in life.  What fun it was getting to know them, and how sad was our parting.  

 http://grandmacharslessonslearned.blogspot.com/2021/05/

Thanks to some forward thinking workers in an adult day program, and one very supportive guardian, I started using FC with one woman ("Linda") and soon was asked to give it a try with another ("Sharon"), and finally we added "Judy" to my weekly visit.  I was assured that in each case the woman's guardian had given full approval for these sessions, although I had only met the one who had gotten things started. I usually met separately with each woman for about 30 to 45 minutes, depending on their level of interest and stamina that day.  Judy had a visitor one day who joined us for our session, and I was happy to give a demonstration of what we had been doing.  Little did I know that would be my final session with Judy. As best I was able to figure out, that visitor was from an agency working with the guardian, and somewhere along the line the old FC controversies must have surfaced.  Without involving me at all, the day program was told there would be no more typing sessions with me, and that was that. 

Ah, but Judy did not go quietly back into a life of silence.  I continued meeting with Sharon and Linda, but we had to be sure the room we used was locked and the window covered because Judy stayed close by, waiting for her turn. It broke my heart to hear her yelling outside the door and trying to get in.  As I left for the day, she would grab my hand and refuse to let go. 

Sharon was next. Once again, I was told that the guardian had insisted that all typing be stopped immediately, leaving me in the very awkward situation of having to walk past both Judy and Sharon when I arrived and when I left, in order to have my typing session with Linda.  Sharon was much quieter, even as Judy became louder and angrier, but it hurt me to see Sharon withdraw into silence in a far corner of the room, lost in thoughts she would never be able to share. 

For a brief moment in time, we had good things going.  I know I have touched many lives, and I try to hang onto that. I plan to continue doing what I can to help nonspeaking folks get their thoughts and feelings out for as long as I possibly can.  But there will always be pain and regret for those who have been silenced, and also for those whose voices have not yet been found.  

Today's Tribute to Esther

Yesterday was St. Patrick's Day and I am always happy to celebrate.  My paternal grandmother (who I never met) was from Ireland, giving me just enough Irish blood to make the most of the day every year when it rolls around.  So, I wore green, listened to Irish music, and could almost taste that pint of Guinness I enjoyed when I had the great experience of visiting Ireland many years ago.

But it's not Patrick I want to write about at this time.  This also happens to be the time for the Jewish celebration of Purim.  I am not Jewish, nor am I a biblical scholar, but I have had reason to learn a little about the story of Esther, the central figure in this particular holiday.   Borrowing from Wikipedia, "Purim is a Jewish holiday which commemorates the saving of the Jewish people from Haman, an official of the Achaemenid Empire who was planning to have all of Persia's Jewish subjects killed, as recounted in the Book of Esther." The king had chosen Esther as his wife because of her beauty and was unaware that she was Jewish. As plans for the slaughter progressed, she revealed her true identity and pleaded with him to let her people live.  She won him over, and the Jews were spared.  There is much more to the story, of course, but that is the essential plot - and outcome.

Again, from Wikipedia: "There is a spirit of liveliness and fun on Purim that is unparalleled on the Jewish calendar. If there were ever a day to 'let loose' and just be Jewish, this is it!" Now, that starts to sound like an Irish celebration, don't you think?  Maybe it's more than a coincidence that these two celebrations happen to overlap today.

Then there are the coincidences or parallels in my life.  Even as Queen, Esther was afraid to approach the king and plead for her people, but her uncle (or maybe he was her cousin) Mordecai begged her to try, saying she was the only one who could save them.

I have written previously about my personal Esther story (See links below), and how the phrase "Esther kids" crept into many of the typed conversations I have had over the years using Facilitated Communication with non-speaking or minimally speaking people of all ages.  One final Wikipedia reference that I find very interesting:  "Given the great historical link between Persian and Jewish history, modern day Persian Jews are called 'Esther's Children'."

It started with a typer or two giving the name "Esther" when they were asked to type the name of a relative, friend or pet and I, as the facilitator, had no idea of the correct answer.  Eventually several of my typers referred to themselves and the others as my "Esther kids."  They told me they were my angels and begged me to tell everyone that they are really very intelligent.  As time went on, I met new typers and moved more than once so that I was in entirely new communities.  Most of these individuals did not know each other and had never even lived in the same town or attended the same school. Some started to talk about the New Earth or moving into new dimensions.  They made it quite clear that they are here on a mission and I am the one they are depending upon to speak their wisdom for them.

Most recently, just yesterday in my typing session with my adult friend Nick, he typed the following: "Understand that people need to hear your story. The most important message is your Esther story. Great more people are now ready.  Hear me now. There are more messages all the time. Be not afraid to tell your stories. Hear me now. All of us are on the journey. There is now more love in the world. Hear me now. Great things are happening. . . . . you need to tell people who is Esther.  . . . Hope is understanding that Esther will be here to do God's world (work?). Warning that people don't love. Understand that other people do not get it. . . .  Be more bold. Knowledge is here."  (Note: the phrase "Hear me now" is one of Nick's favorites and actually popped in more often than is shown here.  He says the phrase out loud and types it with no physical support from me.  For the rest of his typing I am providing light support to his hand or wrist.)

For all these years (almost 30 now), I have been afraid.  Much like that early Esther in the Bible, I wasn't willing to take the risk, to go out into the world and shake things up in the way they were suggesting. She had to face the king and I had to face all the long-standing beliefs about people with autism and other "differences" that caused them to be unable to use oral speech to communicate. But she had Mordecai and I now have Nick to prod me onward and give me the nudge I need.  

In my defense, Facilitated Communication has been challenged and discredited by the skeptics almost from the very beginning.  Many, many children have been denied access to this means of communication, and many others who actually started using it to express themselves have had it taken away because of all the controversy.  Mostly it has been hard (impossible?) for the decision-makers to believe the typed words are actually coming from the typer and not from some sort of ventriloquism on the part of the facilitator.  If someone like me adds to the discussion that some of these individuals, in addition to being highly intelligent, are also messengers from another dimension here to move all of us forward in our evolutionary journey - well, you can imagine the repercussions.  

So, here I am, daring to approach all who venture to this blog post, with a new and improved message from my Esther kids.  They are not only smart, but they are also here on a very important mission.  It has something to do with the journey we are all on - to a new and better world.  I can't tell you much in the way of specifics, but over and over again, I have been reminded that "the answer is love."    Can it be any simpler?  Does it get any better than that?  Enjoy the journey!

Grandma Char's Lessons Learned: My Esther Kids (grandmacharslessonslearned.blogspot.com)

Grandma Char's Lessons Learned: The Search for Skallagrigg (grandmacharslessonslearned.blogspot.com)

My life as a behaviorist - Total Fail!

Call it happenstance, serendipity, synchronicity, the alignment of the planets, or just plain luck - it took a lot of unexpected circumstances to land me in a career that turned out to be a perfect fit for me; one that I still cling to as I approach eight decades of life on this earth. Unless you are as old as I am, I don't think you can begin to imagine how little we knew about autism - or related "differences" in the way we are wired - back in the mid-1960's.

It was only in retrospect that I realized the article about "Joey, the Mechanical Boy," presented in one of my college courses, was an introduction to what would become my lifetime career path.  I really do not think the term "autism" was ever used at that time. It may be hard to believe, but the whole concept of "special education" was just being born at about the same time I finished my Masters degree program in what was then called "Behavioral Disabilities."

Big clue there:  We saw kids who were "different" as needing our intervention because their behavior was a problem. Our job as educators, and indeed parents as well, was to remedy this problem, or more likely a whole set of problems. In my first blog postings I have written about some of my early experiences (http://grandmacharslessonslearned.blogspot.com/2009/05/whats-big-deal-about-iq-anyhow.html  or  http://grandmacharslessonslearned.blogspot.com/2009/03/special-education-in-early-years.html ). Today I want to focus on what I have learned about behaviorism, or behavior modification as it was called in the early years of my on-the-job education.

After taking a few years off of teaching to start my family (four kids in five years, just in case I haven't included that chapter of my life here in this blog - now all are in their fifties, with kids and even grandkids of their own), I started working part-time at a small, private residential facility for kids with the label of "childhood schizophrenia" or "severe autism."  The kids were all between the ages of six and 21, and I was hired as a teacher, but quickly found myself immersed in a program that - of necessity - focused almost entirely on managing some extremely challenging behaviors. Whatever academic instruction occurred was clearly a sideline activity.

Keeping things as simple as possible, we used basic rewards and punishments to deal with anything from severe self-abuse or aggression to simple non-compliance, aided in our efforts by a variety of heavy-duty medications such as Haldol, Thorazine, and Mellaril.  For behavior we designated as "good" a resident could earn a few M&M's or Doritos, along with lots of verbal praise, and for "bad" behavior, there were loss of privileges, time-outs or even some time in the well-padded and infamous "Quiet Room."  As with academic instruction, there wasn't a lot of "good" behavior going on and all too many of those treats I kept in my pockets ended up in my mouth - leading to a weight gain I have been dealing with ever since.

Major FAIL #1 ---  I was brand new at the time, and "Rory" - a tall, thin, older teen - had an unacceptable habit of speaking in language that needed to be extinguished.  I was helping out in an arts and crafts class, assigned to helping Rory glue popsicle sticks together to make a basic structure of some kind.  I was told to give lavish praise when he was on-task and to ignore all of his repetitive use of blue words, trying to get my attention. Over and over again, he glanced over at me and smiled as he said, "f****er, s**t, a**hole" and I ignored him every single time.  When he was momentarily quiet, or when he managed to attach one of those sticks appropriately, I never failed to praise him.  Class was over in about 30 minutes, and I was exhausted.  I quickly retreated to the staff break room to take a few deep breaths.  When I emerged from the break room, I almost literally bumped into Rory, now walking toward me in the hallway wearing only his socks.  Bingo!  He got me!  I totally failed to ignore him this time,  You win, Rory.

Just a few years later, I was hired by a public school where all the students were considered to be in need of special education, a segregated facility where the kids were living at home and transported by bus from all over our county. A particularly challenging young girl was being released from a state facility and I was sent to to the facility for two days of behavior training. "Carla" was given the label of severe autism, was minimally verbal, and had a variety of challenging behaviors (screaming, pinching/scratching, non-compliance, etc).  Again, I was trained to use a combination of rewards (praise or treats) and punishments (time-outs primarily) to help improve overall behavior.

Major FAIL #2 ---  When walking in the hallway with Carla, I regularly praised her for "nice walking" and almost without fail, she followed up by sitting down on the floor.  What I was then supposed to say was, "Time-out, Carla, No sitting in the hall," and that was supposed to lead to a time-out.  That was a little tricky since a time-out involved 30 seconds or so of just sitting - which she was already doing, of course. But at least I could turn away for those 30 seconds and give her no attention, until I then said, "Time-out is over, Carla.  Stand up," and we could walk on - until the whole scene was repeated once again.  Again, you win, Carla.  This is NOT working!

Eventually I made my way to teaching in a regular school, where my group of about eight elementary-age "special education" students were to be mainstreamed as much as possible.  I worked diligently to set up a program of rewards (no punishment involved any more - that was supposed to be a huge improvement) to bring about better behavior as well as more on-task academic performance.  The kids could earn points throughout the week and then cash them in for small toys or school supplies or treats on Friday afternoon.  I went all out and incorporated the academic component of counting money when I distributed real coins that could be used to make these special purchases.  

Major FAIL #3 --- Within just a few weeks, I realized that we had an even split in the group.  Every single Friday there were four students with coins to spend, and four who had few or none, and it was always the same four in each group.  In this case, we all won in the end because I made a huge leap in my understanding of what many of these kids are dealing with and I discontinued the program.  

Especially for those students who are autistic and minimally speaking, what we see as behavior is often the only way they can show us when a situation in their environment is simply more than they can handle, and all too often what we are asking of them is not something they are able to do at that time and in that place. Additionally, their intelligence level is not adequately recognized, and we are speaking to them in a way that is insulting or giving instruction that doesn't match their actual level of understanding.  The reality of apraxia - a disconnect between intention and actual motor output - was a brand new concept and I was still in my early stages of learning.  Thanks, kids, for being so patient with me.

A Story Begging to Be Told

In my regular typing sessions with my friend Nick, some topics are repeated often.  He has warned us of bad times ahead, and reassured us that in the end all will be well because love is the answer.  He types about freedom, knowledge, understanding, and treasures.  Recently he was focused on the continuing dangers of the Covid virus.  JUST KNOW GREAT DANGERS ARE AHEAD. . . HELP PEOPLE ABOUT TO DIE. THEY WILL DIE OF COVID. UNDERSTAND THAT WE DON'T KNOW HOW TO STOP IT. . . . KNOWLEDGE IS COMING . . . WE NEED TO LISTEN TO GREAT MINDS. NEED MORE PEOPLE DOING BETTER RESEARCH.

And then he veered off in a different direction, reminding me once again that I have stories that need to be told, and that there are many people who need to hear them. Often when we ask Nick to be more specific, we are disappointed.  He tends to speak (type) in generalities that leave us wondering what else he really knows and isn't ready to share.  This time he was quite clear: LOOK INTO TELLING YOUR *LESLEY* STORY.  LESLEY NEEDS YOU. SHE NEEDS YOU TO BE NEAR BOTH OF US.

He caught me off-guard, and at the same time forced me to give the matter some serious thought.  It wasn't the first time that Nick had mentioned Lesley by name, and it certainly wasn't the first time he had begged me to tell my stories.  I have to admit that I thought I actually HAD shared at least some of Lesley's story in this blog at some point, but of course Nick was more accurate on this one. 

So I spoke some of my thoughts out loud, explaining that I have not been in contact with Lesley for close to 20 years now.  She was a former student of mine, and for some time after our school placements caused us to be separated, we continued to meet regularly for our FC typing sessions.  She certainly was one of my more prolific Esther kids with lots to say, and I have missed her greatly over the years.  I didn't really need to say all this, because Nick had let me know a few years ago that he knows Lesley - even though they have never met in person, and have never even lived in the same community. They are connected only through me as their communication partner, and the interactions I have had with them are separated by about two decades.

Naturally, I asked Nick if he was somehow in contact with Lesley and he answered without hesitation: WE TALK ALL THE TIME. BELIEVE ME PLEASE. . . MORE PEOPLE NEED TO HEAR OUR STORIES . . . HELP ME TO GET MORE PEOPLE TO BELIEVE KNOWLEDGE THAT WE ARE VERY GIFTED.

Lesley and I talked a lot about writing a book back in those days, and I still have hopes of that becoming a reality.  I won't be sharing all of her story here, but rather a few of the highlights.   

The label for my classroom at the time was CDS - "Cognitively Disabled-Severe" - which was supposed to be a nicer version of Severely Mentally Retarded.  We were a pioneer group in our area, as the idea of mainstreaming was just catching on, and this particular group was being moved from a segregated "special" school into a classroom in a regular school. It was an interesting mixture of kids, having one thing in common - a very low score on the standard IQ test.

As far I know, Lesley was never given the diagnosis of autism, but rather had some sort of genetic or chromosomal difference that set her apart and caused her to have a variety of motor problems, including little or no spoken language.  There is the possibility that selective mutism might have been more accurate since I was told by the family that she really DID speak at home. 

Working toward as much inclusion in the regular classes as possible was easy in Lesley's case.  The teachers were all cooperative and eager to make her feel welcome, even though she didn't ever speak or write in class, and Lesley went along willingly to all special classes and most academic ones as well.  Other than her strikingly slow movement through the halls, there was certainly nothing resembling a behavior problem that any of us had to deal with.

But the same couldn't be said for others in my classroom.  Most of the other students required a lot of attention from me, and as a result it took some time before I was able to help Lesley learn to use typing as a means of communication.  It was a natural fit for her, and she almost immediately chose to use the method as much as she could to do academic work in the regular classroom, with her very dedicated mother serving as her aide and facilitator.  She was all too aware that she had been placed in a grade that did not match her chronological age (SORRY! We were making an incorrect assumption that a lower level of academics was a better fit.  Lesson to be learned here - Always presume competence!)

Much to her delight, and thanks to her persistence on the matter, the very next year Lesley was allowed to "skip" a full grade and move on to an inclusive setting with other kids her age, and a paraprofessional assigned to help with communication and all academic work. As an aside here, the special ed director walked out of the meeting where this decision was made - never did win her over as a believer in FC!

After this "promotion" Lesley was no longer a part of my classroom or caseload, but we continued to meet for typing sessions for a long time afterward.  And that is when the real fun began.  Just a few nuggets that I have saved over the years:

I REMEMBER BEING A GIRL WHO FELT SO ALONE AND NEVER LISTENED TO BY GROWNUPS.

I REMEMBER JUST FROM LITTLE ON THAT PEOPLE THOUGHT I WAS RETARDED AND DIDN’T KNOW ANYTHING.  

LET ME TELL YOU ABOUT MY LIFE AS A LOST SOUL.  PLEASE LISTEN TO ME AND HEAR WHAT I AM SAYING.

EVERYONE THINKS I AM REALLY CRAZY BUT I KNOW YOU UNDERSTAND.  I MAY BE KIND OF AN ANGEL, HEARING SOME MORE MESSAGES FROM GOD.   

 I REALLY NEED TO TALK TO YOU ABOUT YOUR MISSION

Lesley introduced me to the reality that she (and some of the other kids as well) could not only read my mind, but could also communicate with others in our classroom without ever speaking.  She had the additional ability to know what kids in other settings might be experiencing and would regularly alert me when one of them might be needing some extra support or help - much in the same way Nick has recently told me that Lesley herself could use some assistance.  In Lesley's case, these other kids were not in our school and did not even live in the same town. Once again, the only connection they seemed to have was that I was their primary communication partner.

Serving as a medium of sorts, Lesley shared messages from my deceased parents, correctly making reference to real-life situations in my extended family.  She knew what books I was reading at home, and claimed that she and the other Esther kids were usually responsible for helping me find just the right book at the right time.

This is just a glimpse of who this amazing young lady was and what she meant to my life.  There will be more - and some day she will have that book I promised her many years ago.  Stay tuned.

*Not her real name.  Because we aren't in regular contact, I feel obligated to respect her privacy for now.  Nick, on the other hand, clearly wants his story shared far and wide, and he has consistently used her actual name when writing about "Lesley."

For more of my Esther story, visit this link:   https://www.facebook.com/groups/Autismdoorwaytoconsciousness/posts/2383048285092956

Or - visit a recent blog posting.   https://grandmacharslessonslearned.blogspot.com/