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)