Saturday, April 30, 2022

Updated Resource List for Typing to Communicate

My earlier list of resources, posted in 2015, still has many active blogs and other sources of information and personal stories related to typing or spelling as a means of communication.  In the interim, many books have been published and many videos have been added.  A quick search of YouTube, for example, will yield many relevant videos.  A Google search or a visit to Wikipedia, on the other hand, will leave you in a state of total despair, since almost all references are negative in tone.    Here is an updated (but certainly not all-inclusive) list you may find interesting and/or helpful.

Some great new, or relatively new, resources for anyone interested in typing to communicate:

Websites

United for Communication Choice    https://unitedforcommunicationchoice.org

Communication First    www.communicationFIRST.org

International Association for Spelling as Communication   https://i-asc.org/

AutCom     http://www.autcom.org/

Every Voice Matters    http://www.everyvoicemattersatl.com/

Center on Disability and Inclusion (Syracuse University) https://disabilityinclusioncenter.syr.edu

Wellspring Guild   http://wellspringguild.org

Growing Kids Therapy   https://growingkidstherapy.com

Books

"Communication Alternatives in Autism" by Edlyn Pena

"Anatomy of Autism" by Diego Pena

"Leaders Around Me" by Edlyn Pena

“Ido in Autismland” by Ido Kedar

"In Two Worlds" by Ido Kedar

"Life in Letters" by Lia Assimakopoulos

“Hostage to Silence” by Brady Wright

“Real” by Carol Cujac and Peyton Goddard

“Fall Down 7 Times Get Up 8” by Naoki Higashida

“The Autistic Mind Finally Speaks” by Gregory C. Tino

“Underestimated - An Autism Miracle” by J.B. Handley and Jamison Handley

“I Have Been Buried Under Years of Dust” by Valerie Gilpeer and Emily Grodon

“Typed Words Loud Voices” by Amy Sequenzia and Elizabeth j. Grace, eds.

“Autism: A New Perspective” by Andrea Libutti and Joao Carlos

“Nate’s Triumph” by Nathan Trainor

“The Reason I Jump” by Naoki Higashida

Any book by Tito Mukhoadhyay

Blogs

Jordyn's Rocky Journey    Jordyn Pallett    www.jordynsrockyjourney.wordpress.com

Dare to Listen   Gracie Lotharius     www.daretolisten.org

*Emma's Hope Book   Emma Zurcher-Long    www.emmashopebook.com

    * includes a VERY long list of other blogs to explore

Psychic Savant     Darcy Reed      www.psychicsavant.orgnew

Online videos

Vimeo:   My Voice: One Man's Journey to Overcome the Silence of Autism

YouTube:  Julie Sando, The Brain-Body Disconnect: Unlocking Purposeful Communication

YouTube:  Adriana 19 autism nonverbal typing

YouTube:  Timothy Typing Session

YouTube:   Emma Zurcher-Long

Films

‘The Reason I Jump” 

“Wretches and Jabberers”  (Larry Bissonnette and Tracy Thresher)

“Autism is a World”  (Sue Rubin)

“Deej”  (D J Savarese)

“Speechless” (Fiacre Ryan)

       #######################################################

                                        And a link to the earlier list: 

https://grandmacharslessonslearned.blogspot.com/2015/02/resource-list-for-typing-to-communicate.html

Friday, March 18, 2022

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)







Saturday, October 16, 2021

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.


Thursday, August 5, 2021

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/