Patience and Persistence

Most of my writings involve kids and adults on the autism spectrum.  My teaching experience, however, included students with a variety of conditions and labels.  One student from my more distant past stands out in my memory as the perfect example of why patience and persistence are prerequisites for breaking through barriers to communication.  I can't resist a little alliteration:  Prerequisites include patience, persistence, and the presumption of competence (always)!

I will call her Amanda to protect her privacy.  I am no longer in contact with her or her family, and thus not able to get needed permission to share her story with any identifying details. Amanda has Down Syndrome, and came to my classroom when she turned six years old, at a time when the entire elementary school was making significant efforts to make inclusion a reality for all students. For the most part, Amanda was a prime candidate for full inclusion with peers of her own age.  

As was true of all my students, Amanda hadn't tested well on whatever test was used to identify her intelligence level, and similar to so many of my students over the years, she didn't speak at all. There was much we didn't know about Amanda, but her really strong suit was her charming personality and she quickly became a favorite of teachers and kids alike.

She teased all of us by never letting anyone get too close, and by quietly disappearing from time to time, finding hiding places throughout the building that we didn't know existed.  We quickly learned that it was best to let Amanda set her own boundaries and make her own choices of which group activities appealed to her. If we operated on her terms as much as possible, great things happened - and she vanished from sight much less often.

Amanda enjoyed music, dancing, stuffed animals, puppets, dressing up in costumes or fancy clothes,  "reading" books, and scribbling with any sort of writing or drawing instrument on any sort of surface.  And then, there was the computer in the back of our room.  (See an earlier blog post about my love/hate relationship with computers,{Click Here} and realize also that we had only one in our resource room - and the demand was great).  During her time in our room, Amanda would strategically position herself close to the computer with a book or her writing materials and patiently await the moment when the computer station was idle and she could make her move.  With little or no help, she could navigate through a variety of games, handling the mouse as effectively as any of the classmates; indeed as well as most of the adults in her life --- we were all novices with the new technology at this time.

This was before the days of Internet connection, and we had a limited supply of floppy disks that provided a variety of learning games.  When Amanda was enjoying her computer time, I tried to watch from a distance, because if I got too close she would quickly exit the game and leave the area.  From afar, I was pleasantly surprised to see that she was happily practicing basic reading, spelling and math activities; none of which she had demonstrated for us using any other approaches we may have tried.

Something else to be noted:  Amanda's choice of books to "read" or just to carry around with her were not at all like those in her inclusive kindergarten classroom.  Our resource room served kids from kindergarten through grade five, and in her quiet, unobtrusive way, this independently-minded six-year-old girl who carried a label of "cognitively disabled" gathered together and claimed as her own books and workbooks with few pictures and lots of text.  Her favorites included books on the solar system, ecology, insects and animals, an atlas full of maps, and even a high school chemistry book she just happened to find lying around.

My all-time favorite Amanda story involves her fascination with scribbling.  Over and over again, she made tiny circles, followed later by a long period of making straight lines that appeared as hundreds of hatch marks on every possible writing surface, and then little squiggle marks that threatened to take over our classroom.  Amanda's writing appeared everywhere, and if left alone she would hum happily as she entertained herself in in this way for long periods of time.

I often tried to sit nearby as Amanda scribbled, but if I got too close or lingered too long, or (horror of horrors!) tried to talk to her, the humming stopped and she dropped her crayons or markers and moved on to some other area of the room

Until that magic day, when Amanda kept on scribbling while I talked, even glanced in my direction with a slight smile on her face.  Boldly, I moved a little closer, and then when she still didn't leave, I gently placed my hand on her forearm.  Immediately, Amanda tensed up, but didn't pull away, Quietly I explained to her that some of my students could spell out words if I just gave them a little support.  The marker immediately began to flow across the paper, and in large, smooth cursive (!) Amanda spelled her name!

At that point, she definitely looked at me with a huge smile and it was game on!  I asked her if she could spell the names of some of the other people in the room.  She spelled my name, followed by several others, and then was finished, leaving me behind shaking and crying as she quickly left the scene.

On the very next day, I asked Amanda to write with me again to demonstrate her writing for one of our classroom assistants.  Much to my amazement, she was willing, maybe even eager. We sat at the table with wipe-off boards and markers, and I suggested that she write the other woman's name.  Expecting a letter "C' or maybe "S" for Cindy, I was confused when Amanda very clearly made a straight line on the board.  This was followed by another straight line and my heart sank, thinking the prior day's experience had maybe only happened in my mind.  But I kept my hand on her forearm and gently encouraged her to keep going.  The final message is visible below:  "I love all of you" (partially in cursive) followed immediately by "I am so smart"

Yes, indeed, Amanda, you are, and so are many others just like you who are unable to speak.  Please forgive all of us for not recognizing this sooner.    I hope you are still doing well all these years later.

(Update January 2023 - my apologies.  The picture seems to have disappeared.  Maybe Amanda wasn't quite ready to share this with the world.  I will try to reinstate it.)

      

Communication is critical

 

I recently came across a story that warmed my heart and reminded me of some earlier life experiences that reinforced my conviction that access to an effective communication should be considered a basic human right.

The story comes from CNN and involves a deaf and blind man who was traveling alone across the U.S. on an Alaska Airlines flight.   A teenage girl familiar with sign language spent much of the time on that flight helping the man communicate, even carrying on conversations about who he was, where she lived, etc. --- all of this using finger spelling in the palm of his hand. (Think Annie Sullivan and Helen Keller).    https://edition.cnn.com/2018/06/23/us/teenager-helps-blind-deaf-man-during-flight/index.html

Personal memory #1:

(About 25 years ago) I was in the kitchen of our condo with a much-loved two-year-old grandson, who was sitting in the high chair and trying to let me know what he wanted.  The Cheerios were just fine, but we hit the wall when I started offering something to drink in his sippy cup.  I don't remember where I started, but I do remember trying absolutely everything I had available (short of the brandy I may have wished I had for myself at that point!).  Water, milk, juices of all kinds - everything met with the same reaction; scrunched up red face, followed by tears and screaming, and of course always pointing toward the refrigerator, which he must have thought had magic powers to produce exactly what his heart was desiring.  We both survived the ordeal, and he has grown into a fine adult with a new baby son of his own.  Grandma's lesson learned here was that life can be extremely difficult if you don't have a way to make your basic needs known to others.  

My thought at the time about my young students:   Yes, at times they really DO act like two-year-olds and it might be simply due to a serious inability to communicate.  When you don't have a voice, the only way you can express yourself might be through behavior.  Let's get at the communication needs, and let's NOT focus on managing the behavior.

Personal Memory #2:

(About 23 years ago) I was at a local family restaurant having breakfast with good friends.  As it happened, I had a very bad case of laryngitis and could speak only in a strained whisper.  I knew that it could be difficult to be heard, maybe even irritating for others to listen to my voice, so for the most part I remained quiet.  But these were good friends, we were having a good time, and it was definitely not easy for me to stay out of the conversation.  At one point, I had something I really wanted to say, so I reached into my purse for a pen and some paper.  I thought I was being as subtle as possible in doing this, but I noticed that almost immediately everyone else stopped talking and started waiting to hear (or see) what I was writing.  There was nothing earth-shattering about my comment and the period of silence seemed to go on forever, until they could all read what I had to say.  I did not like being the center of all this attention, and was embarrassed by the experience.  I didn't write anything else, and I have never forgotten the incident.  Grandma's lesson learned:  Alternative communication is often cumbersome, with limited effectiveness.

My thought at the time about my students:   If/when they DO find a way to communicate, it almost always involves great effort on their part, and they may be driven back into silence if they sense they are causing an inconvenience to anyone else, or if their words are met with any sort of over-reaction.  They get used to being on the fringes of social interactions, with people talking around them and forgetting to include them in some sort of comfortable way.

Personal Memory #3:

(About 13 years ago) I was on a gurney in the ER of a Hollywood (CA) hospital after suffering the first and only full-blown seizure of my life.  I was under observation, awaiting some tests, and resting comfortably.  There were two other patients at the time, and we were separated only by portable curtains, which allowed everyone to hear whatever was being said.  One patient did not speak English, and the other was severely hearing impaired.  In both of these cases, the hospital workers were diligently making phone calls seeking assistance.  They calmly persisted in their efforts, realizing that the ability to communicate with both of these patients was critical to treating whatever conditions or circumstances had brought them to the ER that day.  Grandma's lesson learned:  Sometimes we really NEED a way to communicate.  It might even be a matter of life or death.

My thought at the time about my students: Oh, if only the powers-that-be in the school system had that same level of realization that communication is critically necessary.  At that period in my life I had been tilting against windmills for over ten years, trying to convince various administrators that my students were in fact much more intelligent than any IQ score might indicate; that they didn't need me to teach them academics "at their level" (or worse yet, teach no academics but focus on functional life skills!); that what they really needed was a means of communication that worked for them.  Sadly, we had found just that in our use of Facilitated Communication, but could not escape the controversy and skepticism that surrounded its use.

Give them the power of the alphabet, and whatever level of support they need.  Then, please do respect and listen to what they have to say.

Trying to Get the Feeling

 One of the many myths or misunderstandings about autism that has led us astray for so long is the belief that folks on the autism spectrum don't experience the same emotions as neurotypical (non-autistic) folks - or maybe don't experience them in the same way.  In my early introduction to autism, I remember a journal article about "Joey the Mechanical Boy."  As the title suggests, Joey was described as a boy who saw himself as some sort of robot, absent human feelings or any desire for human interactions.  Similarly, the very term "autism" was said to be derived from "auto" or maybe "alone" - again, leading to or from the assumption that these individuals (they were all kids at that time; no one was giving any thought at all that they might become adults some day.  See how much we had to learn?) don't really have feelings like the rest of us.  They existed in "their own world" and many of them were left there, alone and withdrawn.

 Based on lots of personal experience, plus the spoken, written or typed reports of many, many people on the autism spectrum, I am convinced they not only experience similar emotions, many of them experience these feelings to a significantly greater extent than the rest of the population.  My students always knew when I was having a bad day, when I was tired or worried, sad or upset.  Some would show this by touching me in a tender way, but more often it happened that my "off" mood caused them great distress that was more than they could handle and we encountered what was so often referred to as "behavior problems" ---  unexplained, of course; we had no idea what was setting them off!

 In addition to being easily overwhelmed by taking on the feelings of others, it is common that kids (and adults as well) with autism are unable to identify their own feelings or emotions, and often can't express how they are feeling in any sort of typical fashion.  One of my students from years ago got reprimanded by our principal when he laughed at a highly inappropriate time.  I don't remember just what sad news the principal delivered that day, but laughing was not the response that was expected.  That principal (and just about everyone else in our school setting) had little or no understanding of autism.  I was a little farther along in my education as a teacher, and I KNEW this particular student didn't mean to laugh or be disrespectful; he understood clearly what the sad news meant, but he was overwhelmed and his body was not within his control at that moment.  Instead of crying, he laughed.  I have seen it happen many times since then.

 Recently in a communication session with L, he typed forcefully, "Help me be more normal" - one of his more common opening remarks in our sessions.  I launched into my usual pep talk about loving him just the way he is,  there is no such thing as "normal," adding for good measure that he doesn't need to change, but maybe we can help those around him understand his autism better so that he can fit in more comfortably.

 For the most part, L is a low-key, easy-going sort of guy who doesn't show much in the way of emotions.  If he is having an off day, he might decide to lie on the floor.  If he is upset about something, he might become agitated, make loud sounds of protest or even bite his hand. In his home setting there is a history of breaking things, with some signs of joy when he does this.  But in all of our typing sessions, he has not been able to use any of the typical feeling words to explain what might be going on.  

On this particular occasion, L remained seated and generally on task, and I proceeded with a typical conversation, trying to engage him in something that might be of interest - the weather, an upcoming holiday, a visit with Grandma maybe.  I was so focused on the keyboard and his typing that I failed to notice a trickle of tears flowing down his cheeks, and a look of agony on his face.  

I wiped away the tears and offered my hand for support. When he was ready he typed, "Please just help me be more a man."  L has often begged me to tell everyone about his intelligence, and has complained that too many people still treat him as a baby.  When he asks to be helped to be more "normal" he knows his appearance fools people and they forget all too easily that he is in fact an adult and deserves to be treated that way.  Still not using any of the feeling words I may have suggested, but the tears made his point very clearly.

 And then at our very next session, with several members of his team present and all of us wearing masks as Covid precautions, L started to smile, then burst into infectious laughter - something I have never witnessed in all our years together.  We all joined in the laughter, couldn't resist! - and asked him to explain.  He looked around, making direct eye contact with each of us and still laughing, then typed, "You all look funny!"  From sadness to joy, and able to tell us why.  This is real progress, folks.

Earlier stories about L:     http://grandmacharslessonslearned.blogspot.com/2017/09/ 

                                          http://grandmacharslessonslearned.blogspot.com/2019/