Tag Archives: Facilitated communication

Directed by Barb

Posted on March 27, 2013 | 7 Comments

Barb is a wonderful director.  Here’s an example of yesterday’s adventures and challenges for this verbal, literal-minded, non Autistic as I did my best to embody Barb in all her mischievous, non verbal, antics as described on page 56 of her book, I might be you.  This passage took me more than thirty minutes to get right:  ”Freedom.  But the mission is far from complete.  No middle-class chain-link fence to hop and then pay dirt.  No, Sir, our musty mansion sits on acres of green, rocky earth dramatically sloping to the Tennessee River.  I take ever caution to avoid a tumbling fate.  Even the most mischievous princesses don’t swim in dirty water – Southern daddy saviors or not. I assume my most stable forty-five-degree stance and horizontally hike to the neighbors’ inviting castle, remove restricting PJs, and let the fun begin.

 ”I think, Wow!  The water is so cold it may make my heart stop.  This sure beats picking or rocking stimulation.  I consider holding off on my 3:00 a.m. phone call-evoking mimicry because I fancy enjoying a longer prerescue soak.  Alas, my scrawny self control fails me again and I sound off with a loud medley of “”you are not going,” “You can’t get in the mail truck,” It’s a fire,” and other such bizarre phrases the sleeping wealthy find disturbing when emanating from their private estate.”

This isn’t a silly story about some southern belle with far too much time on her hands who is up to no good because she’s bored and wants to piss Mom and Dad off.  No, this is a description of Barb’s elopement in the middle of the night to skinny dip in a neighbor’s pool.  It’s funny, but it’s also not funny.  It’s poignant and powerful and yet it says as much about us “normals” as Barb describes those who are not Autistic, as it does about Barb.  Straddling that precarious razor-sharp edge of self-deprecating humor while not holding back any punches is what Barb does best, but say these lines out loud without the right balance of self-reflection, honesty, desperation and rage as well as humor and all those beautiful words Barb painstakingly wrote are lost.

So after each sentence I would glance up waiting for Lois to give me the thumbs up signal before moving on.  On that particular passage there were no thumbs up.  Instead I could see Barb’s bent head as she madly typed things like, “AZ you’re doing great.  But you have to give this more power.”  or “okay AZ you’re taking it too literally, you need to loosen up.” or “Again.   Not so monotone.” And so I would do it again.  And again.  And again.   And again.   At one point I had the thought – I’m not going to be able to get this.  But then I looked over at Barb rapid fire pointing at the letter board and I thought, Damn it.  I will get this.  I have to.  For Barb.  I have to get this right for Barb.  And then I’d take a deep breath and try again.  Because she has trusted me with her words.  She has given me the greatest privilege a person could give another, she has asked me to be her voice.  And that.  That is the single biggest compliment I have ever received from another human being.  And I’ll be damned if I don’t do her words justice.

As a quick aside, y’all (that’s for you, Barb) will be pleased to know I whipped through Chapter 7, which is entitled:  Autistic Sex:  For a Terrible Time, Call.  Because when the words are raunchy that whole upper crust, uptight, WASPY thing works beautifully and it’s funny just because the two are a perfect blend  of lewd and classy, which is… funny.

Em shows Lois how to jump on a pogo-stick

*Em on the pogo-stick

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Questions About Facilitated Communication and Some Answers

Posted on March 8, 2013 | 10 Comments

One of the main questions I had when I began considering facilitated communication for my daughter was whether it was applicable.  After all she has some language, she has no problem pointing and is even able to type with her two index fingers.  If given sentences to copy she can type them pretty quickly on her own without anyone physically touching her.  So why would we even consider supporting her?  Wouldn’t that be a step backward?  These were my thoughts as I began investigating FC.  *Please remember as you read this, I claim no expertise in facilitation, I am very much a beginner and am learning and questioning as I go.

Let me tackle these questions as best I can ~ Why did we consider supporting her typing when she already can type independently and has some language?

Em’s language is unreliable to us.  I do not mean this as criticism, but as fact.  We (and I am not only including my husband, but all non Autistics who come into contact with her) cannot know that if asked something her verbal answer is what she actually means.  She relies a great deal on scripts and we do our best to interpret them, while knowing that we may be entirely wrong in our interpretation.  Obviously if Em yells “No!” and then bites herself, we aren’t completely clueless.  We understand that she means to say no and is unhappy with whatever it is that she is protesting.  But the less obvious communications are not so clear.  We do our best, but our best often falls short.  I am not one who believes my neurology is superior to my daughter’s.  I believe my neurology is greatly enhanced by the hundreds of accommodations I get in life and because our society is set up to help those like me operate in this world with fewer limitations than are available to my daughter.  But that is probably a topic better served in a separate post.

When I went to the Autcom Conference this last fall, it was the first time I had witnessed so many of all ages communicating with a facilitator.  It was a mind blowing experience.  Seriously I felt as though I was on a mind altering drug for two days.  Seeing so many communicate in this way was a transformative experience.  It opened my eyes to what was possible.  It was impossible for me to witness children, young adults, people my age with everything from severe physical challenges to few physical issues, all communicating their thoughts by typing and not ask, could this help my daughter.  Some had some language, many had none, others read what they wrote, and still others did not.  Some required help isolating their index finger, some had support at the wrist, many had support at their elbow, others were supported with a light touch on their shoulder and still others required no physical support at all.  As I watched all these people, as I listened to their words, I kept thinking about my daughter.

Despite my daughter’s language she was not communicating at the level I was witnessing.  At a certain point I had to ask myself this question ~  If we gave her the right support, would she not be able to communicate at a more complex level than she currently is?  And the answer to that question was, yes.  Yes because from a very young age she has demonstrated a level of thinking that is far beyond what she has ever been able to verbalize.  I’m going to quickly backtrack to say, our goal for our daughter was always that she be able to express her thoughts verbally.  Our thinking was, if we could just get her to speak everything else would fall into place.  But I am beginning to realize this goal was limiting her and us in how we helped her.  I now feel strongly and believe that speech is not the end goal, though communication is.  Giving her the tools to communicate effectively in whatever form that may take has become our new goal.  If that enhances her ability to speak, wonderful, it will be one more thing she can use to navigate life.

FC is all about resistance.  This idea of resistance was the single biggest misconception I held about FC.  I couldn’t understand why I would offer resistance when what I wanted was for her to type her thoughts.  It seemed counterintuitive. But just as my daughter prefers verbal scripts, she also tries to type those same verbal scripts if given the opportunity.  Resistance provides her with several things, it does not allow her to impulsively type just any key, it doesn’t allow her to type out favorite default scripts and it gives her time to think and then type the thought that is in her head.  When done well she is able to communicate complex and sophisticated thoughts.  I am not suggesting that she is suddenly writing sonnets or quoting Shakespeare, but she is capable of typing extremely self-reflective and introspective ideas which go way beyond anything she has ever been able to verbalize.  When she is “in the zone” and by that I mean has a facilitator who knows what they’re doing and is giving her the proper amount of resistance her entire demeanor changes.  She becomes intensely focused and there is a kind of calm that overtakes her.  It is as though she is tuning everything else out.  It is just her, the screen and the words she is typing.

I hope I’ve done her experience of this process justice, but until she decides to describe it herself, my interpretations will have to do.

*Judy Endow made a very insightful comment below and so I am amending the above sentence as it is an assumption that I cannot know to be true.  That sentence should be:

I hope I’ve done her experience of this process justice, but until we are better able to facilitate our daughter so that she can describe the process in her own words, my interpretations will have to do.

For those of you who rely on FC to communicate I’d love to hear if my description of what I’m witnessing resonates and is at all accurate or reflective of your experience when typing.

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A Conference, Discovery and Astonishment

Posted on March 6, 2013 | 53 Comments

Last night we returned from the Institute on Communication and Inclusion’s facilitated communication conference in Syracuse.  I cannot quote Em on this blog any more.  Going forward I will write about my reactions, thoughts and words.  And while I feel a little mixed about this decision because I think her words are proving to be far more eloquent and astonishing than mine, it is the only decision I can make given what she is saying and what we are learning.  Having said that, the conference was all I’d hoped for and so much more.  We met many wonderful families, other children Em’s age and younger, adults, young adults and teenagers, all of whom communicate through FC and are in varying stages of becoming independent.  A number of the presenters had gained full independence and had gone on to get their undergraduate and graduate degrees.

For those of you unfamiliar with FC, it is a method of support, which provides resistance to the typer, in Em’s case to help her slow down and not impulsively hit whatever key is closest, or to perseverate or write some of her default scripts.  A facilitator is never to direct the typer’s hand, but is there to offer emotional, physical and, as needed, verbal support, to help establish a rhythm so that the typer is free to communicate in ways they are not able to verbally.  Ideally this support is then faded over time allowing the typer to  communicate independently.  Learning to facilitate properly and well is not simple nor is it easy, though it looks ridiculously easy when watching someone who’s been doing it for more than a few decades.  It requires patience, practice, confidence (in both yourself and in the person you are facilitating) and calm.

As a non Autistic, fully speaking person who can both speak and communicate through writing, relatively easily, it is often difficult to understand what the process is like for those who cannot.  It is easy to view someone who is non-speaking, who has fine and gross motor challenges, who may script or make vocal, seemingly nonsensical utterances, as a person who is the sum total of what we see.  If that same person then displays insights, a brilliance and clarity regarding their surroundings, thoughts and life, a sensitivity and intensity of feelings for themselves and those around them, our limited non autistic brains have trouble making sense of what may seem to us to be a disconnect.  However it is imperative that we not remain locked inside our limiting assumptions.  It is imperative that we open our minds to the idea that not only is there far more going on than we might assume, but that all human beings have the desire to communicate and connect with other human beings, despite what we think or how we interpret another’s behavior.

I cannot do the conference justice in a single post or even several posts.  Far too much was covered, there were too many moments of discovery, insights, moments when it all began to make sense and fall into place, but I will say this – if there was one thing, just one thing I wish someone had said to me and I could have done when we first got Em’s diagnosis, it would have been this,  ”Believe in her intelligence.”  I am not talking about wishful thinking or believing in fairy tales and magical potions or waking up to a child who is able to verbally express themselves with power and poignancy.  I am talking about believing in her ability to understand and articulate far more than I was able to see or acknowledge and finding ways to help her do so.  This is a glitch in my specific neurology, not hers.  This is the detrimental glitch in most non  Autistic, speaking people’s neurology.  We have a terrible time believing that without language there can be a deep, complex and layered thinking process that is often poetic and nothing short of mind blowing.  Without suspending our entrenched beliefs about what we think is and isn’t possible our children will have a difficult, if not impossible, time “proving” us wrong because they will not be given the tools they need to do so.

I do not feel particularly articulate at the moment and I’m extremely emotional.  I am holding so many opposing emotions at once.  I am angry, furious at how autism and autistic people are depicted and talked about.  I am in a state of near apoplectic outrage at the presumptions that currently exist regarding this underserved, largely segregated population.  I feel furious with the limited thinking, the prejudice, the hatred and cruelty routinely shown to autistic people.  And yet, I am overwhelmed with gratitude and love for those who continue to speak out, who continue to fight the ingrained beliefs so that my daughter and those who are right behind her might have a better life than they currently have.

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More About Facilitated Communication

Posted on February 15, 2013 | 49 Comments

Facilitated Communication is such a loaded and controversial topic my initial thought was to avoid it or use other, less loaded words to describe it.  I’ve written about it before, ‘here‘, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  But I can’t use other words because it feels dishonest or like a “work around” and controversial or not, I am trying to learn how to support my daughter in her typing in whatever way I can.  And anyway those who are convinced FC is a hoax will remain convinced no matter what I say and regardless of the words I use.  I cannot NOT speak of FC because the things Em is typing are important and are things she does not and cannot voice through verbal language.  Yesterday during a session with Pascal she wrote: “Frustrating trying really to go slow as i can trying giving my arm big preess helps.  It’s my attempt trying go sometimes sliow is too hard this is better nicer how happy i think is my ideas when its my things i reach for in my heart and head.“

“My ideas… I reach for in my heart and head.”  These were Emma’s words.  I was there filming her, watching her closely, seeing how quiet and focused she became as she reached for each key… time stood still.   This is not a wishful mother hoping her child will miraculously speak words of great wisdom.  This is not magic.  I have been working with Emma for a few months now.  I am doing my best to facilitate, and as I’ve written before, it is not simple or easy, but  I am determined to learn.  I find it incredibly frustrating, but when Em writes something like the above, everything stops.  It is as though we have entered a new dimension.  This is what Emma wrote because she was given the appropriate support and means to do so.

There are, without a doubt, unscrupulous people or those who are poorly trained working in every single field of science, medicine, journalism, politics, in fact name a field of study and there will be examples of people who should have chosen a different career for themselves.  When one journalist plagiarized another’s work we do not then dismiss all journalism as a lie and assume everyone plagiarized, or when we learn of a doctor who has engaged in malpractice, it does not follow that we then reject all medicine and all doctors.  When a psychiatrist betrays their client by behaving unethically, we do not say all psychiatry and all psychiatrists are frauds and unethical.  The same can be said for scientific studies.  If you research FC you will find plenty of studies showing its validity and others determining it is an invalid method.  I do not assume all scientific studies should therefore be dismissed because their findings conflict and disagree.  On the contrary, I assume more needs to be learned and more studies conducted.

People have attacked me publicly for trying to learn how to facilitate.  People have accused me of not reading the various “scientific studies” or not reading them thoroughly or if I have actually read them that I am clearly incapable of grasping their meaning.  I have been accused of being “irresponsible”, “ignorant” and “egregiously and willfully misleading”.  One person in a fit of indignant outrage wrote “you are wrong, wrong, WRONG!” Thankfully they ran out of steam with that last “wrong” and I haven’t heard from them since.  I have grown, if not used to this kind of outrage, at least less upset by it.  But I can speak.  I can type without support.  The people who attack me cannot and will not silence me.  But they can and do silence and discredit those who are not able to consistently speak or type without support.

So for all of you reading this who believe FC is a hoax, I ask you this – What if you are wrong?

“My ideas… I reach for in my heart and head.”

If I could, I would have that written across the sky.

February, 2013

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“I might be you.”

Posted on January 7, 2013 | 40 Comments

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  ”You.” Take a breath and let that in.  ”Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding

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Doing the Best I Can…

Posted on December 28, 2012 | 169 Comments

Yesterday I was targeted by someone whose name I am not going to divulge because doing so will only further engagement and unnecessary dialogue.  I am going to keep this about my reaction to being attacked and will not engage in a counter attack.  One of the things I have learned over the years is that when someone attacks, my knee jerk response is to attack back, but this never actually does anything to further the conversation, encourage discussion or an exchange of ideas.  Nothing changes when two people angrily engage in self-righteous, self-justified shouting matches.  So why do it?

Sadly, within any community, positions are taken, an “us” and “them” mentality which serves to separate each other from the very people we appear to want to engage.  I do not completely understand this desire by some to engage others with their anger.  However I do know first hand the feeling of frustration when I have believed something and had those beliefs questioned, judged or argued with.  When someone says with absolute conviction that they know for a fact that a certain therapy, treatment or way of supporting another does or does not work, I figure it’s worth investigating.  I do my best to look at the pros and cons, I try to read the various scientific studies, the anecdotal stories, and control studies if there have been any.  I take into account how many people were used in the study, I look at who conducted the study and whether there were any conflicts of interest in the study’s results.  I read any controversy surrounding the therapy.

If I know someone personally who is using whatever the therapy, treatment or support is, I reach out to them, ask them questions and observe.  If what I am observing counters the conclusions of some of the scientific studies done, I take that into account and look at why that might be.  Beyond wanting to do what will prove best for my daughter I try to remain open to both sides.  However, if a number of Autistic people have PTSD because of a particular therapy or speak out about it with their reasons why, I listen to their accounts and place more weight in their experiences than I do in studies conducted by neurotypical “experts”.  I also listen to those who are Autistic and have found something particularly helpful, even if many neurotypicals suggest otherwise.

These are the things I do.  Others may have different approaches, but this is what has proven most helpful for me.  When someone then attacks me for doing a particular therapy, treatment or support with viciousness, it hurts, but it does not make me change my opinion, in fact it does the opposite.  When someone personally attacks me with sarcasm, condescension and aggression it serves to make me wonder why they would do so.  When they then back their vitriolic, venomous statements by saying that “science” is behind them and that I cannot possibly have read the studies they cite, when they dismiss opposing studies as being “shoddy” and “poorly” done as non-science or “pseudoscience”, there is no point in responding.  When they then further their comments by saying that I am being “unethical” and suggest that by engaging in such support I am hurting those who cannot speak by putting words in their mouth, it crosses the line of being about ideas, opinions, science or anything else, it is a personal attack.

I come here day after day and share my thoughts, feelings, views.  I try to be honest, above all else and in doing so open myself up to attack.  I know that.  I cannot do this any other way.  I am vulnerable in a way that those who attack me are not.  That’s okay.  No one is forcing me to write a blog or to be as honest as I can be.  These are the decisions I’ve made.  I try hard to keep my side of the street clean, as they say.  Some days I’m more successful at that than others, but I always keep showing up and trying as best I can.  In the end that’s all any of us can do.

Unrelated photograph taken Christmas Day on the ranch

Christmas Day

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An Unexpected Response and The Importance of Trust

Posted on December 10, 2012 | 41 Comments

During my supported typing session with Emma Saturday evening we discussed Little Red Riding Hood.  I asked Em what she thought Little Red was bringing Grandma in her basket.  Emma typed “blueberries”, which seemed like a terrific guess, particularly as Little Red could certainly have picked them herself, placing each blueberry in her basket as she made her way toward her Grandma’s house.  We discussed the wolf and I asked questions I thought it likely Em knew the answer to, but that I wouldn’t expect her to answer verbally, just as Pascal, who is helping me, advised.  Eventually I asked, “Em, what would you do if you were asleep in your bed and woke to see the big bad wolf?”  To which Emma typed,  ”I would go to the three little pigs house”.  Though she paused after she’d typed, “I would go to the”.  I urged her, “Take your time Em.  Write what’s in your head.”  She looked at me and whispered, “three little pig’s house.”  She then typed the rest of the sentence with me.  ”I would go to the three little pigs house.”

I looked at that sentence.  It took me a second and then I laughed and said, “Wow Em.  That is such a great idea!”  After all the three little pigs have had run-ins with the wolf.   They know, better than anyone, how to deal with him AND they figured out how to build a wolf-proof structure after much trial and error that the wolf cannot break into and where they are safe.  Emma grinned at me and then, very sweetly, patted my cheek.  I took her loving gesture as a sign of her encouragement and patience with me.

Supporting Emma’s typing is not easy.  It is actually much harder than I imagined it would be.  I am pretty sure Emma spoke the last four words of that sentence because she was not able to trust that I was able to support her well enough to type that.  I think she sensed my hesitation.  I had no idea what she was trying to type and because I am not well trained and am very new to this, my support varies and is not consistent yet.  I am hoping I will learn and be able to give her the support she needs to flourish and eventually type independently.  What is fascinating about FC (facilitated communication, more on that ‘here‘ and ‘here‘) is that had I asked this same question of Emma and expected a verbal response, I do not believe she would have given me this answer.  If she had, I would have been absolutely blown away.  These are not the types of things we have been able to “talk” about.  Typing is giving her the tool she needs to be able to express herself in a way that has not been possible to date.

As an aside, two years ago we hired a woman who developed a literacy program for Autistic children.  While I have some serious misgivings about certain aspects of her program, the literacy piece is extremely well mapped out and it was what finally gave Emma the tools and practice she needed to learn to form the letters of the alphabet and began to read, write and type.  Now two years later as a result, Emma is reading and writing at a second grade level, though it is probably much higher.  Emma was not taught through phonetics, in fact we never even taught her the names of the letters in the alphabet.  For two years Joe and I worked with Emma every day on her literacy program.  For more about that program you can read ‘here‘ and ‘here‘ or put the word “literacy” into the search box and everything I’ve written on the topic will come up (just be aware my ideas and views have changed pretty dramatically since many of these posts were written.)

I mention all of this, because I want people to understand that Emma did not sit down one day and begin typing in full sentences.  She did not suddenly pick up an encyclopedia and begin quoting from it.  I know there are those who have.  I wanted to pursue supported typing with Emma after going to the Autcom Conference this past October and meeting Pascal.  He was kind enough to speak with me about Emma and gave me some advice.  I didn’t know if she would be a good candidate for FC.  After all she has some language and typed independently with her two index fingers.  But I want her able to converse on a more sophisticated level.  It seemed to me, FC might be the method by which she would be able to do that.

I am always in awe of Emma’s patience with this world, with all of us, with me.  Her inner strength and resilience are incredible.  She has been ignored, doubted, talked down to, spoken of while she stood right there listening as though she were deaf, she has been misunderstood and treated as though she were incapable of understanding.  Were I treated this way I would be in a state of near constant rage, alternating with debilitating depression.  If any one of us were treated the way so many view and treat Autistic (whether non-speaking, marginally speaking or fully speaking) people, most of us would want to retreat from this world and lose all faith in people, even people we love.

I do not know how or where Emma gets the strength to greet each day with such cheer or how it is that she is so good-natured, kind and loving after all she has been through in her short life.  But she has and is.  I began this blog thinking it would be a document of Emma’s progress.  But in fact, this blog is a document of my progression.  I look back on entries made just a year ago and see how completely my ideas about Autism and my daughter have changed.  So much of what I thought and believed I no longer agree with or feel.  I have resisted the urge to delete all those past posts, because as horrified as I am by so many of them, I also know they are what I believed at the time.  My own journey is a reminder that we neuro-typical (not otherwise specified) adults can and do change, sometimes it just takes some of us a bit longer.

Me, Pascal, Richard and Em during our first “training” session

8E&P
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EEEEEEEEEEEEE!

Posted on December 6, 2012 | 73 Comments

EEEEEEEEEE!!!!   (This is, but one, of many fabulous expressions I have come to love and use.  I first saw it used by my friend Paula and it made me happy.  I love that woman.)  What better way to express emotions that go far beyond “excitement”?  What words can possibly express joy and excitement and exuberance and that feeling when your throat constricts and tears flood your eyes and there’s that fluttering feeling in your chest that travels up and down as your vision blurs because of the tears?  Tears of joy.  Tears of overwhelming emotion that are impossible to express, that makes it difficult to breathe.  I don’t know of anything I could write here that would sum up what I am feeling.  EEEEEEEEEEEEEEEEEEE!   ⇐ comes the closest.

Yesterday was our second session with Pascal who is a trained facilitator of more than two decades.  Our first session I described ‘here‘.  Yesterday’s session took place over Skype.  It took us a while to get connected and once we did our connection kept going out on us.  At one point during a particularly exciting moment with Emma I squealed in delight, looked over to see Pascal’s expression and was met with a blank screen.  We’d lost him again.  ”NOOOOOOO!  I cannot believe you just missed this!”  I shouted at the darkened screen while Joe, Emma’s therapist, and Richard laughed.  Our excitement was palpable.  But I’m getting ahead of myself.  Let me back up.

Two weeks ago we had our first session.  It was beyond exciting, but in the interim, between that session and our Skype call yesterday I’ve been filled with anxiety and so have only tried to practice with Emma a couple of times.  (For those of you unfamiliar with facilitated communication, it has a complicated history.  That history I’ve touched upon ‘here‘ and ‘here‘.)  I worried that I would inadvertently push Emma to type something she didn’t intend, I worried that I might betray her, by literally putting words in her mouth.  I have never forgotten one of the things Amy Sequenzia said to me regarding FC – that the most important piece was trust.  I didn’t want to do anything that would betray that, so I did nothing at all.

The first thing Pascal did was cover some of the basics.  We went over different things I could try.  We discussed the correct way of providing support firmly enough to ensure that trust, but not so much that it becomes a vise grip or so loosely that it is little more than an irritant.  Getting the support right is key and not as easy as it might sound.  There is also the resistance piece to all of this and there’s a rhythm that must be achieved as well.  The process is unlike anything I’ve ever done before.  I want to liken it to dancing, not the sort of dancing one does in a mosh pit, but ballroom dancing or learning the mambo, where you have to be in sync with your partner, both with your physical movements, but with your mind as well.  I’ve had some wonderful FC advisors (other moms who have generously talked to me and given me tips from their experiences doing FC) and so I remembered some of their suggestions.  One, from a new friend, Sheree, told me I need to empty my mind.  For anyone familiar with Buddhism this sounds much easier than it actually is.  But when I felt myself wanting to push Emma to hit a certain letter on the iPad, I “told on myself” immediately and Pascal would gently advise me.

As our session continued and I became more comfortable, feeling the rhythm and getting the right sense of her, we went beyond Emma typing answers to questions such as, “Where are they ice skating?” after being shown a photograph of ice skaters at the ice rink in Rockefeller Center and her dutifully typing Rockefeller Center (which I don’t mean to sound blasé about because you have no idea how  HUGE this was, but it was nothing compared to what happened next!)  We moved on to increasingly challenging questions, like “What is the name of the airport we have to fly into before we fly to Granma’s house?”  She typed “Denver” and I gasped.  *I keep wanting to tell you, to describe to you how massive this is.  I want to explain to you that while it may seem small or even utterly unexciting to you, it was beyond exciting for me to see her respond in this way.*  I don’t think I’ve ever heard Emma say the word “Denver” before and while this is something she has heard many, many times in her life; it is a place we must fly to several times a year when we go visit Granma, it is not something I expect Emma to utter.

Pascal continued to ask Emma more questions about visiting Granma and then I asked, without really thinking, “What kind of dogs does Granma have?”  Emma pointed her index finger and then reached for the “g”.  I think I may have held my breath.  Waiting.  Empty my mind.  Wait.  And then her finger found the “e” and I let myself take a tiny breath.  Keep breathing I told myself.  Keep breathing.  Quiet mind.  Be with her.  Let go.  Be with her.  Open mind.  Breathe.  And then her finger found the “r” and on we went until she’d written “german shepherds” complete with the “s” at the end because there are two and of course she’s correct and I sat there and stared at those words; the two most beautiful words my daughter has ever typed and I looked at her and pressed my forehead to her cheek.  I cannot convey the feelings.  Gratitude.  Joy, unbelievable joy and something else…  something I don’t know that I have the words for.  A knowing.  That’s all I can say.  I deep knowing that this is the right road we’ve taken.  We are on the right road.  And I exhaled and asked, “Em.  What kind of dog is Dozer?”  Emma looked at me and said, “Last time.”  And I laughed and hugged her and said, “Oh Em.  Really?  I want to talk to you like this all day!”  Emma beamed at me and then she patted my knee.  ”Okay Em.  Last time,” I said. Then she typed, “nufandland.”

EEEEEEEEEEEEEEEEEEE!

*Cannot type through the tears.

Dozer with Emma, who is terrified of dogs and yet…

Dozer&Em

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Excitement, Impatience and Waiting

Posted on November 26, 2012 | 63 Comments

The day before Thanksgiving a facilitator, P. came over to work with Emma.  I met P. at the AutCom Conference in October and asked him for some guidance in helping Emma communicate more effectively through typing.  And while Emma is verbal, she can voice basic desires, has even begun to comment on things going on around her, she has not communicated more complex thoughts.  I know Emma is intelligent with a great many ideas and interests.  I want to help her express herself in whatever way proves most advantageous, whether that is verbally, through typing or some other, still unknown, way.   I want to help her be a full participant in this world so that she can have choices and options available to her.

P. has facilitated people for several decades, so I felt confident he would be able to help me learn how I can help Emma better and was excited to have him work directly with her while I watched.  We started with a number of apps, Emma had no trouble pointing, using her index finger to match words with images that she knows.  But in the past when it comes to typing an idea, Em will usually type, “yes” or “no” and then repeat the question, which is what she was taught to do with her most recent literacy program.  I am hoping Emma can be encouraged to move beyond that.

As P. worked with her, slowing her down so she couldn’t simply repeat what had been asked, holding her arm at the elbow, putting up some resistance to her desire to type quickly, reminding her to write what she was thinking, asking if that’s what she meant, I felt tremendous hope.  P. asked Em to bring a book she liked.  She brought him a collection of fairy tales and plopped the large book on the table in front of him.  Em chose to discuss Goldilocks and the three bears.  Most of what was typed were fairly simple ideas about the bears and Goldilocks and the havoc Goldilocks causes (much to Em’s delight.)  But then P. asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.  It was a terrific idea, one I have discussed with both children during the summer months when we visit my mother in Colorado where we often see bears.  I have warned the children that if they encounter a bear, especially a mother with her cubs, to not get between them, to keep their distance, to keep their eye on the mother and to make loud noises.

But Emma wasn’t finished.  She then typed, “By the way, this is a very sad story.”  I was astonished.  I had a million questions.  Emma has never spoken this way.  Ever.  ”By the way” is something both Richard and I say, both in jest as well as seriously.   Em has never uttered these words, let alone typed them.  And why does she think it’s a “sad story”?  What strikes her as sad?  Which part or does she think the whole thing is sad?  It is sad, I thought and then I Immediately went to,  I have to become trained in facilitated communication.  I have to find a way to communicate like this with Emma.  As I am not able to become trained in facilitated communication in the next 24 hours, I made an appointment to Skype with P. in another week, which feels like an eternity, and will try to do whatever I can to continue to learn so that I am better able to help my daughter become an independent communicator.

Between now and that Skype call, I am doing my best to manage my impatience, my excitement, my hopes and dreams and the reality that my daughter has a great deal to say and boy do I want to hear it all!

Em & P.

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The Problem With “Scientific Studies” and Typing With Emma

Posted on November 19, 2012 | 9 Comments

Last week the first part of my interview with Peyton and her mother, Dianne Goddard was published on the Huffington Post.  Click ‘here‘ to read it.  This portion of the interview was about the horrific abuse Peyton experienced at the hands of two people who were related to her and meant to care for her.   The interview is an astonishing example of forgiveness, but a couple of the commenters questioned whether Peyton had, in fact, written the answers to my questions herself and presumably those same people also doubted whether Peyton was the true author of her book, i am intelligent.  Disbelief, despite the fact that before the book was conceived, Peyton wrote about her abuse and it was confirmed by the two people who abused her.  An abuse that was done in secret; an abuse so horrific it defies the imagination; abuse that went on for a very long time and was known by  none, other than Peyton and those who abused her.

Last Friday I decided to devote a post to FC, you can read it ‘here‘ and while none argued against FC and those who use it here on this blog, one of the commenters on the Huffington Post piece wrote, “I am just relating the controlled scientific studies on FC.  I am saddened that people chose to publish personal information and discount scientific data to mislead the public.”  As I read this I thought, but therein lies, at least part of, the problem.  This IS personal to many, many people.  For those who use facilitated communication it is the difference between being able to communicate and being in this world in a way that is not available to them otherwise.  It means no longer living a life in silence and feeling isolated, it means connection and it can mean the difference between being institutionalized or not.  For those people and their families, FC makes all the difference in the world.

As I reflected on all of this and the swirling debate surrounding the legitimacy of FC as a “valid” form of communication I wondered about the term “scientific study”.  What exactly constitutes a scientific study, what is the criteria for such a study, what are the guidelines?  I found this site from the USDA and there’s this on Judging Criteria for Scientific Research and this, Understanding Scientific Studies where I read, “The scientific process is a road of discovery. It is the process of gaining knowledge about the universe through the observation of measurable evidence. Contrary to what many people  believe, this ‘road’ is not  a straight, smooth motorway: researchers may take different directions of exploration, going down routes that twist, turn, and sometimes even backtrack or come to a dead end, before the facts are uncovered. Even then, the facts uncovered may be only part of a larger, partially understood phenomenon, which requires further research  before we come to  more complete answers.“

To return to the question of FC there is much more to be learned.  The studies that have been done to date -  Investigation of authorship in facilitated communication, Contested Words, Springlink an Evaluation of 8 Studies, Facts About Facilitated Communication, A History of Facilitated Communication and A Validated Case Study of Facilitated Communication show the wide array of “scientific studies” and the resulting conclusions which range from, FC is a hoax to Facilitated Communication is a valid form of communication.  Reading any one of the above links I’ve provided makes a compelling case for or against the use of FC.

And yet, for those of us who have personally seen FC used by people like Tracy Thresher, Larry Bissonnette and countless others I can say without a doubt that they are indeed speaking for themselves.  I can recount my own experience with my daughter who learned to write and type with hand over hand support that was gradually lessened with time as she showed a greater ability to write and type independently.  Today she no longer requires any support at all, types with her two index fingers, sometimes without looking at the keyboard and hand writes unaided as well.  However there are people who, because of their physical disabilities, cannot do this, may never be able to do this, and so for them, a facilitator will always be necessary.

For those who question the validity of FC, by all means, read the many studies, educate yourself.  As Amy Sequenzia once said to me, “it’s okay to be skeptical.”  However in the case of FC there are enough “scientific studies” that conflict and in the end only prove that some people are communicating using FC and their lives have been transformed as a result and others have not been as fortunate.

For any who are interested, here is a video of Peyton using FC that she and her mother sent me.

This was a typed “conversation” I had with Emma yesterday.

Me:  Hey Emma let’s type together!

Em:  Happy birthday der Emma.

 Me:  Em, your birthday is in January, but you are thinking about your birthday now, right?

 Em:  Happy birthday.

 Me:  We’ve been talking about your birthday a lot lately.  It’s exciting.  We are planning to go to a hotel with a swimming pool for your birthday and then to Elite Gymnastics for your birthday party. 

 Em:  And take a taxi.

 Me:  Yes, we will take a taxi!

 Em:  To go to that now howtel.

 Me:  Right!  We will take a taxi to a hotel and we will spend the night there.  All of us will go there together.

 Em:  Yes,  we will take a taxi to go to that new hotel has a pool.

 Me:  Yes.  We are going to find a hotel that has a pool.  I know that’s what you want the most; a hotel with a pool.

 Em:  Go in your room.

 Me:  Then what?

 Em:  Get are batigsot on take the elvalr up to the rof and go swimming in the pool.

 Me:  Yes!  We can go to our room, get our bathing suits on, take the elevator to the pool and go swimming in it.  That’s a great idea.  That sounds like so much fun!!

FC users Larry Bissonnette and Tracy Thresher (with his facilitator Harvey Lavoy) at the 2012 Autcom Conference 

Tracy types during the Q & A at AutCom Conference 2012

 

Movie trailer of Wretches and Jabberers

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