Stories and More Stories

 I am so excited to share two new books, both of them novels, and both featuring a main character who uses typing/spelling to communicate.  I don't want to give away too much of the plots, so let me just say I couldn't put them down once I got started.

(1) "Happiness Falls" by Angie Kim.

One reviewer had this to say:  "A brilliant novel that has everything I want in fiction --- great writing, fascinating characters, suspenseful storytelling, and thought-provoking themes."

Author Angie Kim: "The primary thing I hope all readers take away from this story is that we shouldn't equate oral fluency with intelligence. A person's inability to speak (or perceived deficits, like accents, syntax irregularities, stuttering, dyspraxia) often as nothing to do with that person's cognitive abilities; just because you can't speak doesn't mean you can't think or understand."

 An interview with the author:  https://www.npr.org/2023/09/05/1196977062/in-happiness-falls-a-father-gone-missing-brings-family-tensions-to-the-surface

(2) "I Never Get Lost in the Woods" by Aaron Jepson

From the back cover: "(This) is a story of the hidden courage and unquenchable desire of a young woman to overcome the barriers of her disability and assume control of her own destiny."

Author Aaron Jepson has autism and very limited oral speech.  He learned to communicate using RPM, and typed this amazing book one letter at a time with his father at his side.  He writes:  "I hope that this story helps the readers to pause when they meet someone who is labeled as "disabled," whether it be through physical, emotional, or intellectual challenges, and consider instead their strengths, their abilities, their capacities and yes, even their power to change the world around them for the better."

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You might also enjoy following some of these bloggers:

Gregory Tino:   The Autistic Mind Finally Speaks     https://inautism.wordpress.com/

Aaron Jepson:  www.aaronjepson.com

Jordyn Pallett:  Jordyn's Rocky Journey     https://jordynsrockyjourney.wordpress.com/

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For a MUCH more comprehensive list of sites to visit and things to read, check this out:

 https://neuroclastic.com/directory-of-nonspeaker-pages-blogs-media/

 

This link should also work for an earlier version of resources:

 https://www.blogger.com/blog/post/edit/3841739978768061069/6486118124939092301

 

 

It's Not Just One

It's not just one  --- person

While most of us start out using Facilitated Communication (or any of the newer variations of typing/spelling to communicate) with just one individual, it usually doesn't take long to realize that this particular individual is not the only one who can benefit from this alternative form of communication.  In my case, I started out working with a young girl whose parents were eager to give FC a try. She let me know in very short order that several of her friends at school were also very smart, and she wanted me to try using this new method with them as well. I tried, they proved her right, and the fun began.

Here we are, over 30 years later, and there is a brand new movie out --- "SPELLERS" has now been watched by millions and features eight young people who use a letterboard or keyboard to answer questions and share their thoughts. In the intervening years, many other typers have been featured in books or films, many have given presentations, some have graduated from college, and there can be no doubt that it isn't just one person who has been helped by some form of spelling or typing.

It's not just one --- area of disability.

Rosemary Crossley started using FC with Anne McDonald in Melbourne Australia, and expanded the method to others with severe Cerebral Palsy (like Anne).  Doug Biklen visited the facility where Anne was living and brought FC back to the U.S., where he and others expanded its use to students with autism who were nonspeaking.  

At the present time, the emphasis is still on nonspeaking autism, but many individuals with Down Syndrome, along with many who have been labeled as "severely cognitively impaired" (or some variation of this unfortunate label) have also proven that they have much to say and have many abilities that have been untapped and unrecognized.  Ever so slowly, we are doing away with the idea of IQ scores or functioning levels, and instead learning to always "presume competence" regardless of diagnosis or outward appearances.

And it's not just those who struggle with spoken language.  I have personally used FC with several individuals who speak quite well, but don't use the spoken word to communicate effectively.  They might have a few favorite topics they repeat with anyone willing to listen, but can't or don't answer even the most basic questions and don'r really engage in back and forth conversation. Using FC seems to slow them down, and help them to focus enough to carry on a meaningful exchange with a conversation partner.

It's not just one --- method

I am thrilled to see what is happening with the newer forms of spelling or typing to communicate.  Soma Mukhopadhyay introduced what has come to be known as RPM (Rapid Prompting Method) and several years later S2C (Spelling to Communicate) was born.  Call it letterboarding or supported typing --- what all of these methods have in common is a belief in the ability of those who struggle to use spoken language.  This is where "presume competence" enters the picture.  Throw out all our old ideas of mental retardation or intellectual disability and see what happens if an individual is given a means of communication that works for them. Recognize that neuromotor differences cause a variety of problems with motor performance, which is critically tied to the use of oral speech. Provide needed supports, training and practice, and you might find that these individuals know much more than any of us ever suspected.

It's not just one --- reason for rejection and controversy

Acceptance of some form of typing or spelling as an alternative form of communication might seem like a no-brainer for those who are nonspeaking, or minimally speaking, but the opposition has been intense. 

Established interventions for autism and related conditions are more deeply entrenched than we might realize.  Almost all are based on some form of behavior modification, and almost all have become highly profitable businesses.  Often, ABA (Applied Behavior Analysis) is the only intervention parents hear about, and often the only one that is covered by insurance plans.  Prescription medications are similarly covered by insurance or Medicaid, and might be the first thing physicians suggest when parents request help with their young child with autism.

In the early years of FC, some individuals who were given a voice for the first time in their life used that voice to report some form of abuse in their lives (present time or sometime in the past).  Others wanted to share messages that were highly spiritual in nature, or seemed to be evidence that they were able to read the minds of their communication partners or parents.  Either/both of these situations quickly became problematic, especially in school settings. 

FC was criticized most of all because it involves the physical support of a partner or facilitator.  But the fact that both RPM and S2C carefully have eliminated this component by working on independent pointing to letters from the very beginning, with NO physical touch involved, and are still being rejected by most schools and the American Speech/Hearing Association (ASHA), leads me to believe that in reality the biggest obstacle is that professionals in this field have a very hard time accepting that they might have been wrong.  They simply cannot see these individuals as intelligent, they can't admit they might have underestimated them, they can't allow for the changing paradigm that is needed here.  Whether the resistance is due to ego, or possible financial losses, it is our vulnerable friends who need access to an alternative means of communication who are being silenced.

We all need to hear what these amazing individuals have to say.  They have been locked in silence far too long.According to SPELLERS - the movie - there are some 30 million nonspeakers in the world.  Most are still waiting to find their voice.

 

REPEAT: They DO Grow Up!

 I feel the need (for so many reasons) to share this one again - eight years later.  Seems to me the need is only getting greater.

After many years of teaching, mostly at the elementary level, I retired and found a second career that I love.  I am blessed to be currently working on a very part-time basis, with lots of needed flexibility, as an independent provider of services.  My "services" mainly involve supporting people who type to communicate and helping others learn to support them in their typing.  I have had only one elementary school age client, and the rest are all older teens or adults.  In fact, one of my newest clients is 59 years old, has only recently been introduced to typing after a lifetime of silence - and is loving her new-found "voice!"

In the process of making this transition in my personal and professional life, I continue to learn valuable lessons that I am all too happy to share.  As always, I hope what I have to say might be helpful to others. and especially helpful to the many adults who have been misunderstood, or even mistreated, all their lives because the decision makers in their lives failed to see the person inside.

Recently I attended a social event for folks with disabilities who are served in day programs in our community.  As I looked around, I tried to picture the young kids who had been my students years ago.  What do THEY look like now?  What types of programs are they in?  Are they involved in their communities?  Do they have a means of communication?  Does someone in their life know they are intelligent, with thoughts and feelings just like the rest of us?

For too long now, we have tended to think about autism as a condition of childhood, probably because it is a label usually given to children,  often between the ages of three and five.  Schools didn't really start admitting these students until sometime after the Education for All Act was passed in the mid 1970's and the early incidence figure was about 1 in 10,000.  Most recently that figure has grown to 1 in 68 of all children in the U.S. - and for the most part, around the world.

Individuals with Cerebral Palsy, Down Syndrome and other conditions also tend to have difficulty with communication, and many share a similar fate of being considered unable to learn/think/feel like their non-disabled peers (or NT's - for Neurotypicals).  Something else they have in common is they all grow up.

I was in the public school system when children with autism first started trickling in, and each school that welcomed a non-speaking child with significant behavioral challenges struggled mightily to figure out what to do.  These were not like the other kids with "special needs;"  their needs seemed to be extraordinarily special!  To read about (and maybe have a laugh or two as you do) my early years, check out Carla's story.

I remember many meetings where professionals sat around big tables and tried to cobble together a program that would meet the needs of one individual with "severe" autism, sometimes but not always involving those who knew that child best - the parents.  These were the GOOD schools, who had a school psychologist, speech therapist, occupational therapist, physical therapist, special educator and paraprofessionals who cared and wanted to do what was best, to provide whatever level of support each particular student might need.  Other schools stumbled along, trying to make that extra-special student fit into an existing model.  Just take a guess as to how successful those programs were!

Now I see a tsunami of extra-special young people leaving the public schools and entering the vast wilderness of adult services.  It is unfortunately happening at a most inopportune time, as budgets are cut and services are strained to the max.  It might seem to be helpful that many people are seeking employment and may be willing to give a relatively low-paying job a try.  But I see this as a huge part of the problems that arise.

The existing models of adult services aren't going to meet the needs of these folks.  Sure they need food, shelter, safety and other basics.  But we fail them terribly when we treat them either as nursing home patients in need of care, or children in need of training.  They are competent adults, with thoughts and feelings just like the rest of us, and they need and deserve our respect as we work with them to continue their progress towards the greatest level of community inclusion, independent living and intellectual stimulation possible.

We have moved away from putting people into institutions - a huge step forward, and one that claims to be economically sound as well.  But life in the community requires more than sharing an apartment or house with a roommate or two and paid staff, around the clock if needed.  There must be job opportunities, recreational activities, social interactions, meaningful learning options, and most of all, direct care staff who understand how important all of these services are.

When we hire workers at close to minimum wage, with few or no benefits. and ask only that they pass a background check and are willing to give this a try as a career, we are asking for trouble.  The good ones won't stay and the others are totally unprepared for what is being asked of them.  Workers mean well, and try their best, but often they have no background in the field of disabilities, are given little or no training, and are expected to provide support to a very needy person who is unable to speak, with virtually no oversight.  For hours on end, they are the one in charge, making critical decisions as to how a particular situation should be handled, and struggling to know how to interact with a person who may need total care and has no way to communicate.

Sometimes I am called in to help staff learn about Facilitated Communication so they might be able to interact in a more meaningful way with their clients.  I welcome these opportunities, but all too often realize I have to back way up and share basic information about neurological differences, motor  problems, sensory issues, and the unimaginable frustration of being unable to speak - leading to a lifetime of being underestimated and misunderstood. Communication is a critical piece of the puzzle, but every piece is critical when the needs are so great.

We need a new model; the people we serve deserve better.  And if we can find a way to meet their needs throughout their lifetime, we will all be in a better place.  It is worth the effort.

Here's How it Happens

This is a reposting from several years ago. 

Since my retirement from the classroom in 2003, I have found several different ways to stay involved in the field of autism. I have written already about the opportunities to give presentations, which I try never to pass up. My favorite involvement continues to be working one-on-one with an individual who is struggling to communicate. Most often, I am contacted by a parent who has tried just about everything else, has heard the controversy over FC, and is willing to give the method a try - hoping against all hope that their child might be one of those who has something to say. Or more likely, afraid to have their hopes dashed one more time. 

They've been disappointed so often but can't quite give up - these are some of the most tenacious people I have ever known. (My critics say I am preying on gullible parents and giving them false hope. I say they've been living in false despair, based on our misperceptions of the abilities these kids really have!)

Last week, I traveled across the state to meet "B" at the request of someone who has known him for several years, had heard one of my presentations, and dared to believe enough in "B" to give FC a chance. Within minutes of my arrival, "B" was sitting at the computer with me, we were having a typed conversation - full sentences, complete with correct spelling and punctuation - and we had a teacher close by crying tears of joy. "B" is near the end of his time in the public school system and has been considered to be "severely cognitively disabled." What usually goes along with such a label is a program that focuses on functional life skills, helping the student become a more functional part of society - self-help skills, social skills, job skills, etc. Little or no academics are included for most of these kids. It's the way I taught for most of my career; we all thought we were giving the kids what they needed most. 

Essentially nonspeaking, able only to repeat words or phrases ("echolalia"), but unable to use words in a meaningful way, "B" is a friendly sort of guy, but has had some rough times along the way. In fact, he was attending school only for a short part of each day during the last semester because he had become quite aggressive toward a classmate, and it was feared that someone would get seriously hurt. School staff had tried various behavioral and sensory approaches, but they knew they hadn't gotten to the root of the problem. "B" smiled eagerly as he became more fluent in his typing, realizing the power he had while I supported his hand and he typed his thoughts. I wasn't surprised at his message: He wants us to tell everyone at home and at school that he is smart, he wants to thank us for believing in him. He wants to type every day and he wants much harder work while he is in school. And he is unable to control himself when his overly sensitive nervous system becomes overwhelmed (as in a noisy classroom with one particular student making loud noises). I had started out in my typical fashion, asking "B" to type his name - we tried it with no physical support, but he wasn't able to do that - followed by basic questions about the day of the week, colors of clothing, etc. But I quickly sensed that "B" was able to move beyond that, and was, in fact, eager to do so. 

If it hadn't been for my experience with a different young man, "N," I might not have moved on so quickly. I first met "N" about two years ago, in his home, and he too was nonspeaking except for a few repetitive words or signs that he used to make his basic needs known. When I sat next to him the very first time and asked him to type his name, he did so immediately. Then as I thought about my next question, he "borrowed" my hand which was still holding his, looked across the table at his mother and typed, MOM NEVER STOP BELIEVING IN ME. "N" was 12 at the time, and he too had not been part of an academic-based school program. He too wanted to type every day, wanted everyone to know he's very intelligent, and was appreciative of the unfailing support he had felt from his loving family. He caught on immediately that typing to communicate gave him power he hadn't had in the past. He could use typing to let the people around him know what he was thinking and feeling. 

In my typed conversation with "B," I typed a statement or question and then extended my hand to provide support so that he could read and respond. Just seeing that he could actually read and process what I was asking was enough to make his teacher cry. He's 18, and up to this point had not been able to demonstrate to anyone that he was able to read. But it was so much more than that. We typed for close to two hours and he didn't want me to leave. I am filled with joy at my experiences, but also with frustration because I know there are so many more just like "B" or "N" who could benefit from FC. It's hard to deal with the anger that creeps in when I think about the naysayers who stand between these amazing young people and the voice they deserve. For the most part, the only ones who are respected for what they have to say are those who have become independent in their typing, and even then the critics find reason to doubt what is happening. 

Why is it so hard to admit we've been wrong for a long time? Why can we not all rejoice in the realization that these young people may not be able to speak (or type without support) but that doesn't mean they don't have a lot to say, and it doesn't mean they can't think, learn, feel, and have opinions just like the rest of us.

The Lighthouse Room

 Overheard in passing:   "All they do is play in there."  "I can't wait till that lighthouse is gone."

In spite of this, my memories of this particular classroom experience are almost all positive. It starts and ends with the lighthouse, a structure made by some parent unknown to me and donated to my classroom when I first started what turned out to be my final years of teaching.

It was large and sturdy, taking up a significant portion of the room, but that was OK because we had very little in the way of furniture --- a comfy couch, a table or two, lots of books and toys, and no desks at all. Thanks to the efforts of a very insightful Occupational Therapist, we soon added a swing that was suspended from the ceiling and a sensory table that could be filled with water, sand, oatmeal, corn - or just about anything that might be fun to play with.

My students ranged in age from six to twelve, and had various labels and diagnoses.  All but one were mobile, and most could talk, feed themselves and participate in at least some of the regular education curriculum.  But their needs were great, and this particular school building hadn't yet had the experience of working to include kids who were seen as so very "challenging."

Yes, indeed, we DID play a lot. One thing all of these kids had in common was a serious deficit in their ability to entertain themselves and have fun.  On their IEP it was usually described in some terms related to age-appropriate social skills.  (You know the language, I am sure).   When we could provide proper support, they attended classes in a regular grade classroom.  When they had "down time" they were back in the special ed classroom with me.

We were located in the center of the building - my very favorite location - and other students and teachers walked past our room all day long.  Everyone could see the lighthouse as they passed, and everyone could see us "playing."

Jay was the one student who was not mobile due to Cerebral Palsy and he spent his day in a wheelchair. He had use of just one hand, and very little spoken language.  When he did speak, he was very hard to understand.  He was also the oldest of my students at that time, and magically captured the attention of two of his classmates in his regular fifth grade class.  Irene and Kate took a special liking to him, and just happened also to be leaders among their peers. They often gave up recess time to come and hang out with Jay, and in the process became acquainted with Jay's classmates in my room.

It didn't take long for other fifth graders to show a similar interest, and somewhere along the way we switched from being the "special ed room" to being known throughout the school as the "lighthouse room."  Then it spread to younger classes, until it became necessary to issue passes to the other regular education teachers to extend the privilege of visiting to others in the building.

Never in my wildest dreams would I have thought to set something like this up.  It just sort of happened, and it was a combination of Jay's friendly disposition along with the lighthouse itself and of course all the "fun" things we had in our room.  If you are working on age-appropriate social skills, nothing gets better than what Irene and Kate started.  

Unfortunately, there was a problem with timing in this too-good-to-be-true situation. Several of my students were successfully using Facilitated Communication throughout the day - to interact with all those visitors, of course, and also to participate in the regular education curriculum. Jay, for instance, had worked diligently with me the previous year to successfully complete a battery of standardized tests that all of our fourth graders had taken - and his results were impressive to all who were paying attention.

The problem came when my book (SEE US SMART!) was publishcd, and the controversy over FC reared its ugly head one more time.  The local newspaper got involved once again - and not in a positive way this time.  I was told to keep all further use of this method carefully under wraps, and use it only for academic work - not for socializing, and certainly not for discussing personal thoughts or feelings. 

More people were now paying attention, and it wasn't working in our favor.   As it turned out, we finished out that school year, and I moved to the middle school with Jay and a couple other students, as I eased myself toward retirement.  The lighthouse was removed soon afterward, but it's now over 20 years later and I am still trying to shine the light.

This link should take you to an earlier posting about this same classroom experience and an update about how things have changed at that school.     

Grandma Char's Lessons Learned: Thoughts about Inclusion (grandmacharslessonslearned.blogspot.com)

(Credit to Vicki Hansen for this poem and image)

A New Inclusion Experience

This is a story from 30 years ago, still filled with so much joy and sorrow that I almost can't find the words.  Maybe this is another lesson for me, one of many still being learned.  Just this week, I met with L, age about 30, who has come a very long way in his ability to use typing to bring about changes in his life and get his feelings out.  He was full of smiles, with what appeared to be a calm, relaxed body ready to answer our questions or share thoughts of his own.  But it didn't go that way, and in the hour we spent together he actually typed very little - just enough to help us understand that he was simply too full of mixed feelings to get the words organized enough to type them out. His earlier school experiences were a partial cause of his obvious distress, with typing never being included as part of his school day, and his intelligence never being recognized by teachers along the way. Sometimes it can be hard to find the words to describe your feelings.

My first real experience with inclusion in a regular elementary school had gone quite well, but then it happened that the particular school building needed "our" room for other purposes in the coming year, and we learned that we'd be moving to another school, another district nearby - where they happened to have a room available.  We took our final trip in the tan van to visit the new school - checked out the lunchroom and the playground, met a few of the folks who worked there, and decided we could make the best of things and find lots of good in our new surroundings.

We left behind the tan van, along with many staff members who had become good friends and strong advocates - the school secretary, the custodian, the only other special education teacher, and several regular education teachers who had made us feel welcome and at home.  I paid little or no attention to something else that I was personally leaving behind, something that would become a serious problem in a very short time.

I had been employed by the county for the many years I worked in the special, segregated school, and I was now going to be employed by the new district.  I became, after many years of teaching, a "probationary" teacher, with virtually no protection for my professional status.  I knew this, but I was certainly not worried. What could possibly go wrong?

As the new school year started, we were now in the district that was the home district for most of my students. There were several other special education classes already in that district; we were again located in a room that was right in the middle of a busy hallway; and the elementary level teachers were a very experienced, very caring group of educators.

About half of my students were able to attend regular classes for much of the day, with little or no extra support.  The ones who needed more support spent a greater part of the day with me in our room, but we also had more than one paraprofessional who could provide the help they needed when they did go to regular classes.  

This is where I was teaching when I first learned about Facilitated Communication (FC).  Since all of my students at that time were able to speak, and most could even write, it didn't seem at first that FC would be relevant, or helpful in any way.  Just a reminder - this teacher, who was at the time a brand new grandmother, had a lot to learn.

The local newspaper did an extensive story about what was happening back at our special school --- where so many of the nonspeaking students who had been our friends while we were there had finally found a voice through spelling on a letter board.  I shared the story and pictures with my students, and they were fascinated.  

We established a routine in our classroom, and as time went on also established ourselves as an integral part of this new environment.   And then one day, I tired using FC with just one of my students who was struggling to give an answer to a question. The support I provided to his hand allowed him to slow down his thinking process as well as his bodily impulses, and he found a way to successfully get his words out on the letter board.  Others were very interested and eager to give it a try as well.  

Before long, there were five students regularly choosing to use FC to answer questions both academic and emotional in nature.  We were having a great time, and one teacher in particular approached me to say that he didn't really know what we were doing in our room, but he sure had noticed a difference in my students when they were in his art class or in the hallways of the school. 

Gradually, I was able to increase the amount of time these five students were able to spend in regular classes, and thus make inclusion even more of a reality.  But some started to pull back; they wanted me with them in those classes so they could truly participate and show others how much they were understanding and learning when they were exposed to the "regular" curriculum.  

We did our best to make this work, and were just finding our groove, when PBS Frontline aired a devastating attack on the new phenomenon known as Facilitated Communication ---  essentially dismissing the method as a dangerous hoax.  This was followed by similar segments on all of the major TV networks.  I was immediately ordered by the parents of one student to stop using the letter board or FC. More quietly, school administrators started paying attention to what I was doing.

By the end of the school year, I was forced to resign, in spite of strong support from all the other parents, most of the teachers, and the teachers' union.  The truth was that as a probationary teacher I could be dismissed for virtually any reason.

It was an extremely painful departure, but I had no regrets about standing my ground and refusing to stop using FC.  I had found the courage I needed, and I had learned that administrative support can make or break a teaching situation.  I was also comfortably sure that that the parents who supported my efforts would never again allow their children to be seen as intellectually deficient. I swallowed my pride and joined the ranks of the unemployed for the first and only time in my career.

Venturing out into the Real World

We called it mainstreaming at the time, and it was the first attempt at school inclusion in our rural county.  Because I had been rather outspoken about my concerns that we were behind the times in our "special" county-wide school, I was given the assignment of moving a small group of elementary students to a "regular" school about 20 miles away and doing my best to make it work.  I was young and full of both confidence and passion, but there were many, many lessons to be learned.

Several different small towns had been sending their students with special educational needs to the centrally located "segregated" school for many, many years.  The school we landed in was a small one, in a very close-knit, very conservative village of about 2000 people.  Only two of my eight students were residents of the town.  We were outsiders, and different, in just about every way.  To my mind, these were the easy ones - all could walk and talk; all could dress themselves and were independent in the bathroom; and all could easily and appropriately feed themselves in the lunchroom.  It didn't take long for me to realize that no one in this school saw us as anything resembling typical.  

But the blessings were many.  Our classroom was located right in the middle of the school - not in some isolated corridor, as often happened in these early days. The principal and regular education teachers were all supportive and made us feel welcome. We had desks, materials, and our very own computer. Because we were still a part of the county-wide special education cooperative, we also had access to a school van, which soon became a central part of our curriculum.

I was tasked with teaching these eager young students the "functional life skills" that had been carefully spelled out in the special school curriculum, while also working toward mainstreaming each of them into as many regular classes as possible.  I stumbled into a routine that included one day a week where we borrowed the van and went out into the community for some sort of real-life adventure.  Before the trip, we made lists of what was needed, studied maps to see where we might go, and packed our lunches for the day ahead. After the trip, we wrote up stories about our trips in the "tan van."  On a large easel outside our classroom, I posted the story each time we went - and because of our location, virtually everyone in the building walked past and often stopped in to comment on what we had written.

In November, we put on a play telling the story of the First Thanksgiving, and invited visitors in to see the play and enjoy some fall treats we had prepared.  As we became more and more comfortable in our new setting, the students became braver all the time about spending more of each day in the regular class to which they were assigned, and all of them took part in the holiday program in the gym at the end of December --- with their regular classes, and with me sitting proudly in the audience.

We did have one classroom aide assigned to us, but that wasn't really enough to support all eight of the students, who ranged from kindergarten through fourth grade, and were all assigned to different regular education classrooms.  Scheduling this support throughout the day/week was a new challenge for me that I hadn't figured on.  Nor had I given any thought at all to the critical importance of the unsung heroes who keep schools running -- not just the teachers, but the bus drivers, the secretary, nurse, janitor and even those who clean the building after the kids have left.  In this particular setting, they were incredibly helpful and supportive - to the students, and especially to me.  Without them, our experience would have very different indeed.

Unfortunately, logistics required us to move after just a very short stay to a different school, in a different small town, and start all over again.  Kids who really need stability often end up getting moved around like this when the projected numbers in one district allow a classroom to open up, or require one like ours to be reassigned for part of the regular school programming.  We took one last trip in our tan van to visit our new school, wrote up our story, and sadly left this one behind.

 

Unstuck (We Hope) and Back on Track

This is probably a good time for a couple housekeeping details, starting with an apology to anyone who is a regular follower of this blog, or who may have tried to post a comment or become a "friend" of the blog.  My techie skills are not as sharp as I might like, and in all these years I have not figured out how to make the site more user-friendly.  I generally post on both FaceBook and Twitter whenever I publish a new blog, but that isn't much help to those of you who are not on social media.  If someone has a suggestion to help out with this, it would be much appreciated.  Or, if you have additional comments or questions, please do email me at:   crbrandl777@gmail.com

One unresolved problem has been that links I have inserted into the blog postings only seem to work for a short period of time.  From now on, I will try another way to provide these links.

And then, when I started this blog, I was thinking it would be a chronological story of my journey as a teacher, as well as a grandma, and most recently a retired teacher still working part-time doing something I love (and now a great-grandma).  But, alas, my brain doesn't work that way, and there have been so many detours and side stories that any such order is long gone.  I have always been an abstract-random sort of person, and offer apologies once again to those of you who might prefer a little more order or structure.

And now, moving on. 

My personal history with special education and the movement toward inclusion has had an uncanny similarity to what has been true of the field in general, at least here in my home state of Wisconsin.  Sometimes it seems things were just meant to be - and I have been blessed to be a part of the progress we have experienced.  Have I mentioned that I was born in 1943, the year that Leo Kanner was credited with first describing what we know as autism? How's that for synchronicity?

I stumbled into a brand new college major, mostly because I was always trying to figure out how to afford the next step in my education.  For all of you who are much younger, it might be hard to believe that this was difficult at a time when tuition was a mere $150 per semester.  But it was!  In the middle of the 20th Century, schools were not required to provide an education to children with disabilities, although some had programs that were being taught by kindhearted teachers who were willing to give it a try.  Somewhere around 1964 (Was this maybe part of the Great Society?) funds became available to train teachers at the university level in the area of Special Education.  I applied for a grant and was one of three students accepted into the inaugural program at the University of Wisconsin.  When I graduated with my M.S. degree and Special Education certification n 1966, the three of us had our pick of schools throughout the state who were looking for people just like us.  

My very first teaching job was an elementary class for the "educable mentally retarded" (EMR) and we started out in a church basement room just a block away from the elementary school.  See link below for a description of that assignment.  Suffice it to say, we were not being "included" in any way at all, even once we were moved into the regular school.  

Along the way in my education, I spent time as a volunteer in a residential facility for kids with significant disabling conditions of great variety.  Most were confined to cribs, and those who were mobile spent most of their time in a stark, virtually empty day room.  There was no educational programming and no opportunity for inclusion of any kind, just relative safety, regular meals, and a clean bed to sleep in.

I also helped out in some classrooms that were contained in regular public school buildings.  Those programs at that time tended to be entirely self-contained, and the students, for the most part, would be labeled "Learning Disabled" today.  The curriculum was essentially a watered-down version of what was being taught in the regular classroom, and these kids spent no time at all with "regular" kids.

You may have heard statistics for the number of kids with autism, starting at about one in 10,000 --- most likely in the mid to late 1970's.  That is about the time I first became aware of the condition we now know as autism, with current numbers running at about one in fifty. 

The 1975 "Education for All" act opened schoolroom doors for students of all levels of intellectual functioning as well as all levels of need for support and accommodations, later known more popularly as IDEA (Individuals with Disabilities Education Act).  In yet another coincidence in my life, I started working at almost exactly that time in another residential facility - one specifically designed for children between the ages of six and 18 with severe autism and/or childhood schizophrenia.  It broke my heart to think these kids weren't home with their families, especially when I realized that many of the families rarely came to visit, and the kids went home for a visit even more rarely.  But they were by far the most challenging students I have ever had the privilege to know --- and to learn from.We tried to provide something in the way of educational programming, but the main emphasis was on managing behavior.  All we had to offer in that regard at that time was medication (lots of it) and some variation of "B-Mod" --- our shorthand for behavior modification, using rewards and punishment (way too much of that).

By 1980, I was teaching in what is best described as a "segregated" school serving kids from across our county, between the ages of six and 18.  Once again, some of the students with learning disabilities were getting watered-down academics, but now they were joined by kids with some very significant needs who were getting mostly therapy and help with basic needs, with something new thrown in - functional life skills.  A large room in the school was converted to a fully furnished apartment where kids could practice things like setting the table, making a bed, sorting silverware or folding towels.  As a busy mother in my off-duty hours, I found myself wishing that my so-called "regular" kids at home could learn to do some of these things. But I also had to consider that most kids did not learn these tasks in a school setting.  It didn't help that many of them had significant motor impairments making these household tasks almost impossible for them. Obviously, there were still no opportunities for inclusion.

I started to question the value of what we were doing, becoming more aware all the time that we were warehousing these kids in a rather restrictive learning environment. Certainly some of them --- maybe all of them --- deserved a chance to be around typical children their own age.  Once I started voicing my doubts it wasn't long before I was challenged to put my money where my mouth was - and I was moved out into the real world with a group of  six students with autism, Down syndrome, and usually mild/moderate/severe "retardation" thrown in based on IQ scores.

Finally, we had some hope of being part of a regular school environment.  Many great, and some not so great experiences were to follow, and of course my education was just beginning.  

For more reading:

http://grandmacharslessonslearned.blogspot.com/2009/03/special-education-in-early-years.html

 http://grandmacharslessonslearned.blogspot.com/2011/04/autism-my-early-education.html

 http://grandmacharslessonslearned.blogspot.com/2018/08/thoughts-about-inclusion.html

 http://grandmacharslessonslearned.blogspot.com/2021/10/my-life-as-behaviorist-total-fail.html

http://grandmacharslessonslearned.blogspot.com/2021/10/my-life-as-behaviorist-total-fail.html

 

Getting Stuck and Then Unstuck

I seem to have hit a long spell of writer's block. I think I know why. With all that is going on in the world, and being the news addict that I am, it is all too easy to get buried under all the bad news. In an effort to stay positive, I have tried avoiding negative stories of any kind. But it turns out that I have one or two not so pleasant stories to tell, and I don't seem to be able to go forward until I share them.  If you personally choose to wait for the happy stories to return, I will certainly understand.

For some time now, I have been thinking about endings, and unfortunately most of them have been sad. One of my mom's favorite sayings was "All good things must come to an end." I think she was trying to help me over moments like when the parade was over, or we put away the holiday decorations. I was not the easiest child to console at such times, as I recall. Things can end with a bang or a whimper, and in my career as a teacher, and especially when supporting folks who type to communicate, I have experienced both.

The easiest way to end a teacher-student or facilitator-typer partnership --- at least for me --- has been when one of us has moved away.  That was always sad, but it somehow seems natural, something to be expected in the normal course of  life.  Families move, teachers get reassigned, students move on to a new school, etc.  As a good friend reminded me many years ago when a favorite student was moving to a different city with her family, "There will always be more kids who need you."  

The hardest  for me have been the instances where a non-speaking individual has used Facilitated Communication to report some type of abuse in their lives, and either the school or the family makes an abrupt decision that there will be no more contact between the two of us.  Thankfully, this has been a very rare occurrence, and I will not be discussing these situations to protect the privacy of everyone involved.  It probably goes without saying that these were very painful experiences that I will remember always.

I don't know whether to consider the pandemic shutdown a "bang" or a "whimper" experience, but it certainly did bring an unexpected end to much of what I had been doing ever since my retirement from teaching. On Friday the 13th of March, 2020, I met with two young men for about an hour each. "T" was the first, and we were using extra precautions (masks and gloves) so we could have an almost-normal typing session.  T was obviously aware of what was in the daily news reports, and obviously concerned about my welfare.  This is what he had to say:

"I might make you get it. Please help lots of people get over their fear. I might be more informed but I still have lots of fear.  Please help more people know how important it is to be careful. I just think fear is not healthy.  I think people have good sense.  How can I be more careful. Please be more careful.  You help me very much."

And then I met with "R", who managed to sleep soundly for almost the complete hour we were together.  At the very end, he woke up just enough to type:  "Please please be more careful I don’t want you to get it."

At that time, I was meeting with about ten different individuals on a regular basis.  Some of them I have not seen since then; there were no goodbyes, no parting words, and little or no updates on how they are doing.  Others are part of my life once again, now that we are all vaccinated and feeling safer about meeting.  For those who have a communication partner in their lives, it is much less distressing to let go, but when I know that some no longer have access to FC, or any other means of communication, I am haunted by thoughts of what their lives are now like. 

One amazing young woman had told me via typing that she dreamed of an apartment of her own, maybe with a roommate, and a career that involved drawing cartoons or illustrating books. We met regularly for several years and then she had a psychotic break. I visited her in more than one hospital setting and in more than one "safe house" after she was discharged.  But we never typed together again.

An amazing young man - also after several years of regular visits - came to my office one day with his support worker, sat on the floor and started to cry.  When I was finally able to coax him to do some typing he told them that he would never be seeing me again. I tried to reassure him that all was well, but I was acutely aware that his school days were ending and no one had informed me of what the plans were after "graduation." It turned out that he was right.  I have not seen him since that day and never did hear anything from his family.

I hope this link works for you.  It is my story about three very special senior citizens who found their voice through typing later in life.  What fun it was getting to know them, and how sad was our parting.  

 http://grandmacharslessonslearned.blogspot.com/2021/05/

Thanks to some forward thinking workers in an adult day program, and one very supportive guardian, I started using FC with one woman ("Linda") and soon was asked to give it a try with another ("Sharon"), and finally we added "Judy" to my weekly visit.  I was assured that in each case the woman's guardian had given full approval for these sessions, although I had only met the one who had gotten things started. I usually met separately with each woman for about 30 to 45 minutes, depending on their level of interest and stamina that day.  Judy had a visitor one day who joined us for our session, and I was happy to give a demonstration of what we had been doing.  Little did I know that would be my final session with Judy. As best I was able to figure out, that visitor was from an agency working with the guardian, and somewhere along the line the old FC controversies must have surfaced.  Without involving me at all, the day program was told there would be no more typing sessions with me, and that was that. 

Ah, but Judy did not go quietly back into a life of silence.  I continued meeting with Sharon and Linda, but we had to be sure the room we used was locked and the window covered because Judy stayed close by, waiting for her turn. It broke my heart to hear her yelling outside the door and trying to get in.  As I left for the day, she would grab my hand and refuse to let go. 

Sharon was next. Once again, I was told that the guardian had insisted that all typing be stopped immediately, leaving me in the very awkward situation of having to walk past both Judy and Sharon when I arrived and when I left, in order to have my typing session with Linda.  Sharon was much quieter, even as Judy became louder and angrier, but it hurt me to see Sharon withdraw into silence in a far corner of the room, lost in thoughts she would never be able to share. 

For a brief moment in time, we had good things going.  I know I have touched many lives, and I try to hang onto that. I plan to continue doing what I can to help nonspeaking folks get their thoughts and feelings out for as long as I possibly can.  But there will always be pain and regret for those who have been silenced, and also for those whose voices have not yet been found.  

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)

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                                        And a link to the earlier list: 

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