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 (  or ). 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:






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:

Or - visit a recent blog posting.