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 those who wish to dig deeper into those earlier stories, here are a few suggestions:

Qim Tunes (Tom Smith, now deceased)

 Mary Ann Harrington E-zine articles

https://www.amazon.co.uk/Making-Connections-Facilitated-Communicating-Inclusive/dp/1886928053

https://www.amazon.com/Mommy-Ben-Made-Cake-Communication/dp/1591132142

 https://www.amazon.com/Paid-Privilege-Hearing-Voices-Autism/dp/1886928061/ref=sr_1_1?dchild=1&keywords=Paid+for+the+Privilege+Dan+Reed&qid=1624488736&s=books&sr=1-1

 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!