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/

My Esther Kids

 

 

 

Telling my "Esther" story is probably the most difficult thing I have done in my writings - here or elsewhere.  In the early days of Facilitated Communication we were all so excited by our experiences that we never dreamed of what was to come.  But if you are brave enough, I invite you to check out Wikipedia on the subject, or enter the term into a search engine --- but please do read this first, while your heart and mind are open.  At the very end of this blog posting is a link to what I have shared already, along with some of the discussion that followed.  Check that out also.

Here is the shortened version:  I was brand new to using FC and eager to share the good news with anyone who might be interested.  "Esther" first made an appearance when my very first FC user was asked to tell me the name of another child who was present.  I didn't know the other girl's name nor did I have any idea how significant the interchange was to become.  My typer came up with the name ESTHER, which was somewhat close but not the right answer.  No big deal, right?

Maybe not, but in a similar situation several weeks later, a different FC user in a completely different situation typed ESTHER when asked what his dog was named.  Months after that, in yet another completely different setting, "J" was asked to tell me about a cousin who had visited, and (you guessed it!) the name ESTHER popped up again.

These episodes all happened in my very early years of using FC, and became so commonplace that I haven't recorded all of them, but now that I am working in a different county, different city --- and exclusively with adults who have no connection at all with those kids from almost 30 years ago --- on occasion one or the other will surprise me by a statement like this:  "I THINK I MIGHT BE ONE OF YOUR ESTHER KIDS."

I have not found another facilitator who has had a similar "Esther" connection, but I certainly have encountered many who have had experiences related to telepathy or other instances they can't explain. Check the list at the end for suggestions - if you are brave enough to "go there!"

I have considered various explanations over the years - maybe it is a reference to Esther in the Old Testament, maybe there is a connection to Esther in the book/movie "Skallagrigg, or maybe it comes from the term "ether" -- in metaphysical terms the "element that connects us to spirit, intuition, other realms and planes."  In future postings, I hope to share what some of my FC users have answered when I have asked for more specific input on the subject.

So, why has it been so hard to share my story?  If you have been on the FC journey with me from the early years (I started in May, 1992), you already know how things came crashing down.  If you are relatively new to FC, a quick review of Wikipedia or a Google search will help you understand that we who have continued using FC have been under scrutiny, or attack, almost from the beginning.  If I tell you that these non-speaking, or minimally speaking, individuals are actually quite intelligent, and very aware of all that is happening around them, that is one thing - and a very hard one for many people to accept, by the way.  If I go on to tell you that many of them have special abilities such as telepathy, or connections to the spiritual world, that is almost sure to close any door that we might have managed to open in your mindset.  Even among the strongest defenders of FC, stories like mine have been (almost) totally silenced over the years.

But, here is some good news:  Other methods of spelling or typing to communicate have been developed and are becoming more widely used.   Many of these newer spellers have amazing gifts to share also.   There is hope for a future that is more open and accepting.

 For a more thorough discussion of my Esther story, this link should work:

 https://www.facebook.com/groups/Autismdoorwaytoconsciousness/permalink/2383048285092956

The Search for Skallagrigg

Yesterday I watched a YouTube video that I can't get out of my mind.  The movie was made in 1994, and was hard to watch for many reasons - the dialog is difficult to understand, the closed captioning is terrible, and many scenes are very disturbing - dark in every way.  And yet, I couldn't stop watching.

 It was the story of "Skallagrigg" - with special ties to my past.  Let me try to explain. without giving away too much of the story, just in case you want to read the book or watch the movie.  The author, William Horwood, is a British novelist who happens to have a daughter with Cerebral Palsy. The movie is loosely based on the novel (published in 1987 in England), which in turn undoubtedly has some basis in the author's real life experiences.  Wikipedia has more information - the book itself is VERY long!

From a 2005 review of the book:   "We then begin to learn about the life of . . . Esther Marquand and her quest to find the Skallagrigg – a character who crops up in stories of hope and deliverance passed down among disabled people. Which brings us to one of the many notable aspects of this book: Esther has Cerebral Palsy, and many of the characters are disabled."  (Blogging Bookworms, 2005)

In a long, winding plot line with lots of confusing twists, turns and generational jumps in time, the story covers a full range of disability-related issues: misunderstanding and mistreatment of those with significant disabilities, the horrors of some institutions, the difficulties associated with mobility and communication, and all the struggles that go with relationships and sexuality.  PLUS, in this instance (it is a novel, remember) the  main characters are able to communicate among themselves amazingly effectively, often with no words spoken.

I learned about "Skallagrigg" when it was mentioned in an early book on the shifting paradigms in special education written by Anne Donnellan and Martha Leary - "Movement Differences and Diversity in Autism/Mental Retardation" (1995). I had encountered many children with a variety of significant limitations, and many of them could have been placed in institutional care, but were instead living at home with their families, and schools were just beginning to give serious thought to what was best in the way of educating them. I was particularly intrigued because the children in the story were able to communicate without spoken language - which I was beginning to encounter in my own classroom - and because the heroine happened to be named "Esther."   (More about that in a separate blog).

But the book was not easy to find.  At the time it was published only in England and there were strong restrictions in place regarding distribution elsewhere in the world.  I was relatively new at using the computer, and I think Jeff Bezos and Amazon were just getting started in his Bellevue, Washington garage.  Nevertheless I persisted, and eventually the book appeared in my mailbox.  Then things got really interesting. 

I started reading the book right away, and found it fascinating.  I happened to be working on my own book at the time, and occasionally meeting at my home with Lesley, a former student who was one of my most prolific FC typers.  Lesley often caught me by surprise with comments about other students I had worked with - many of whom she had never met, but was very concerned about.  When we met for these sessions, we sat at my computer and enjoyed back and forth conversations, with very little being spoken out loud.

One day I typed:  Do you know about Skallagrigg?  And Lesley answered (using FC with support):

SKALLAGRIGG IS THE BOOK YOU GOT FROM ENGLAND.  IT IS ABOUT KIDS LIKE US WHO LIVE IN AN INSTITUTION.  YOU ORDERED IT FROM THE INTERNET. 

 The very next time we met, I asked Lesley to tell me more about the book:

ESTHER IS IN AN INSTITUTION AND HER FATHER FINDS OUT THAT SHE IS SMART.

SHE ALSO IS REALLY GOOD ON THE COMPUTER.  SHE LEARNS HOW TO PROGRAM GAMES.  ESTHER IS MY HEROINE.  YOU USUALLY READ THE RIGHT BOOK AT THE RIGHT TIME.  YOUR ANGELS MAKE SURE.  ARTHUR IS ALSO IN THE BOOK.  HE IS IN AN INSTITUTION ALSO AND HE IS WAITING FOR SKALLAGRIGG TO COME AND SAVE HIM.

Do you know this because you are reading my mind or do you know this yourself somehow?

REALLY I JUST KNOW. 

And that, my friends, is what they all say whenever I ask "How do you know that?"  Somehow, they just know!