Category Archives: facilitated communication

FC and RPM

Posted on April 24, 2014 by | 41 comments

Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are often a bridge to the ideal goal of independent communication.  There are those who may not be able to achieve full independence because of physical challenges. It bears repeating, however that the eventual goal for all who are physically able to, is independence.  And yet both methods are criticized.  In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words.  Even though no one touches them as they type.  Even though there is no physical contact of any kind as they write.  Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind and body that are often not in sync.

In the case of FC there are a number of people, now independent, who began typing to communicate, but for physical reasons need the help of another person to provide resistance or to help with physical challenges.  As with Applied Behavior Analysis (ABA) where a child is given hand over hand prompts that are hoped to be eventually faded, so it is with FC.  However FC is continually attacked for using, often less, physical prompts than ABA practitioners use.  Some people like Barb Rentenbach, Peyton Goddard, Jennifer Seybert and Tracy Thresher are now typing with a finger placed on their shoulder or the middle of their back.  If one goes back to how they began to type, this shows enormous progress.  All of them are intent on becoming fully independent and work extremely hard in trying to reach this goal.  Yet, it is interesting to note that few people object or question ABA’s use of hand over hand prompts.   What is good for one, seems to not be good for all. Why is that?

Carly Fleischmann who types independently wrote, “I don’t have a hand up my butt like a puppet…”  Despite her words, if you google “Carly Fleischmann” the second search term that comes up after “Carly Fleischmann blog” is “Carly Fleischmann fake”.  Oddly, when entering “Stephen Hawking” into google, the search terms are “Stephen Hawking quotes” and “Stephen Hawking black holes”.  Why is it that Carly Fleischmann, who types independently, is viewed with suspicion, while Stephen Hawking is not?

RPM, the method created by Soma Mukhopadhyay, does not use physical prompts at all.  No one touches the person writing, but instead a stencil board is held in front of the person writing.  The stencil letter board, it is hoped, will be eventually faded and replaced with a laminated letter board with the goal, in my daughter’s case, being able to move to a qwerty keyboard, which is how Emma now communicates with me as well as with the person she has weekly RPM sessions with.  Still, there are those who insist that no matter how steady the letter board is held, the person holding it is manipulating it ever so slightly and enough to influence the person writing.  Or, as is the case with Carly and others who type independently, it doesn’t matter, the fact that they are not able to speak seems to be all people need to discount their words, no matter how they communicate.  All of this would be laughable if it were not for the tragic fact that people’s voices are being discredited and silenced.

My friend Kerima Cevik, of the blog The Autism Wars, recently wrote “My Standing Position of Facilitated Communication” and posted it on Facebook.  It immediately went viral and brings up a number of excellent points consistently ignored by those who seek to discredit FC.  Please read it.  I find it incredible that people, almost all of them psychologists, just as Bruno Bettelheim claimed to be (and not neuroscientists) continue to come up with all kinds of theories regarding any number of things involving autism and Autistic people, things like Theory of Mind and Cognitive Empathy.  All of these are “theories” and not scientifically proven as fact, yet they are treated as fact, while things like RPM and FC are ridiculed for not being scientifically proven and dismissed, while other methods like ABA are applauded, funded and given a golden seal of approval.   One more question to consider, why is it that people who are aphasic are not immediately given ABA?  No one recommends ABA as a therapy for someone who has had a stroke and as a result cannot speak.

I urge all of you to consider, regardless of what other people decide they believe, if a child cannot communicate through spoken language what are their options?  Whatever the approach is, whether it uses pictures, hand gestures, eye movement, pointing, or some other form of communication I have a series of questions I ask.

Does this approach presume competence?

Would I use this system for a non-autistic person who cannot speak?

Does it infantilize?

Is this way of communicating limiting or is it a bridge to more complex communication?

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

 

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Posted in Autism, facilitated communication, Rapid Prompting Method

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Emma’s Story

Posted on July 23, 2013 by | 51 comments

Emma told me I could post her story on here this morning.  This is a story she wrote yesterday with Rosie (Rosemary Crossley).  Rosie developed a technique more than thirty years ago to help people with a variety of issues, specifically those that make speaking difficult or impossible .  Em held onto a tube with one hand while Rosie held the other end as Emma typed.  Rosie began yesterday’s session by asking Emma to write a story that began with either, “once upon a time” or “one day.”  I was standing near Emma, with Richard, Joe and Em’s teacher, Katie, all watching as she typed the following.

“One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.” 

Not sure I can actually continue writing here…  but I’m going to try… *Breathe*

I have read this story more than a dozen times already.  I know I’m totally biased, but I’m just going to say it – what an incredible story!  There are so many layers to it.  This story that Emma wrote with great concentration, with little pause is the first story she’s ever written.  She was focused and when asked about the word “flower” she verbally said “powder” in explanation.  Rosie explained that flower/flour are words that sound alike but are different in meaning.  Rosie explained that the powder kind is spelled “flour.”

But there’s more…  A little later Rosie brought out a math app called Math Magic where Emma proceeded to zip through addition, subtraction, multiplication and division.  None of this is particularly noteworthy, except that Emma has never been formerly taught division.  She was choosing the correct answers from a field of four.  A sample equation is:  “56 ÷ 8” and the multiple choices available were: 2, 9, 7, 6.  Emma chose the correct answers independently.    Allow me to say that again.  Division.  Emma chose the answers independently.

It was at this point that I felt so many things all at once it was almost impossible to speak.  But more than anything I kept thinking about how we continue to underestimate our daughter.  I had no idea she could do division.  Not only can she do division, she can do it quickly.  There’s another app Rosie recommended – Brain Pop and Brain Pop Jr. which Emma also did as we watched.  Not only did she listen to the short lesson, but then read all the questions silently, read the multiple choice answers and chose the correct answers.  It seems verbal speech is tricky, particularly when she is expected to answer questions verbally.  When asked to read silently and then identify the correct written statement by pointing to it, Emma did beautifully… about Ellis Island, no less!  The only interaction Rosie provided with both the math and Brain Bop was to use a laminated card that she silently moved across the words as Emma read and she did not allow Emma to point to any answer until she’d finished reading all the choices.

I cannot imagine how awful it must be to be so capable and yet treated as though you were not.  I imagine it must feel like being “bruised all over.” I imagine it must feel like you “fought a lot”.  My wish for my daughter is that she may continue to do all that she is doing, while we provide her with every opportunity to flourish and continue to show the world how very “clever” she is.  The only limitations are the ones we provide.

I am incredibly grateful to all who believe in her, all who have helped and who continue to help us so that we can be better parents to our daughter.  The list continues to grow…

Rosemary Crossley

Rosemary Crossley

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Posted in Autism, facilitated communication, supported typing

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Non-Speaking People Who Type

Posted on June 6, 2013 by | 73 comments

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this.  So… here goes…

Facilitated communication has had a bumpy history.  It began in the ’70’s and has been lurching along ever since.  There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate.  This post is not about whether FC is valid.  Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here.  For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently.  And here is where things get really interesting.  Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so.  Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance.  I am writing about the many people who began typing with a facilitator, but who now type independently.  By independently I am referring to those who may still need a trusted person standing nearby.   Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder.  Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words.  They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words.  One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.”  Not to quibble, but seriously?  So this is like some sort of typed ventriloquism?  Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types.  And while you’re at it, try standing next to the person and psychically urge them to write something.  It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for.  Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means.  This is not a “choice” that’s being made.  The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate.  They are silencing them.  They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth.  Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes.  The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”.  Sadly Carly is not alone when it comes to such beliefs.  There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings.  There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”.  There is nothing new about the silencing of human beings deemed inferior.  (Read Inventing the Feeble Mind by James W. Trent, Jr.)  The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do?  How would you respond?  How would you fight back?  Could you fight back?  Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.”  For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

Barb types

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“I Might Be You” – The Audio Version – Voice by Ariane Zurcher :)

Posted on March 22, 2013 by | 10 comments

Next week I will be in a recording studio taping the audio version of the wonderful book, I might be you by Barb Rentenbach and Lois Prislovsky.  *Doing a happy dance.  Barb asked me to be her voice a few months ago and without hesitation I agreed!  EEEEE!  Not only will I spend time with both Barb and Lois, but Barb will direct me to make sure I don’t mangle her beautiful words or trample on her often bawdy sense of humor.  It’s all in the delivery; I will do my best to make her proud.  Did I mention, Barb is funny?  She has a wonderful, edgy, R-rated sense of humor.  She avoids nothing and no topic is off-limits.  And while I’m not exactly a prude, I may get a little rosy-cheeked as I attempt to do her words justice, especially that chapter discussing masturbation, sex, or the lack of, and those hunky personal trainers who motivate her…  Taking a deep breath.  For those of you unfamiliar with the book, I wrote about it ‘here‘.  For those of you interested in purchasing a hard cover copy, and why wouldn’t you be (?) you can do so ‘here‘.  (I gain nothing from your purchase, other than the pleasure in knowing you will enjoy reading her book.)

I first met Barb and Lois at the AutCom Conference in the fall of 2012.  Their presentation was crowded, but I managed to secure myself a seat at one of the round tables.  I remember watching Barb type on a key board and being wonderfully surprised by both her self-deprecating sense of humor and how quickly she was able to type.  I admit, I couldn’t keep up as the letters whipped by while Lois read what she was typing.  Barb told of how it took her ten years to write the book because there were so many who simply did not believe she was actually writing the things that were being typed.  The assumption was that Lois or whoever was facilitating her was doing the writing.  But Barb being Barb, did not allow their doubts to stop her.  Now Barb is typing independently, her book has been published and the audio version is about to be recorded!  Woot!  Woot!

Do I need to say how excited I am?

Have I mentioned how honored I am to be Barb’s voice?

Stay tuned next week for ~ Adventures in the Recording Studio with Barb!

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“I might be you.”

Posted on January 7, 2013 by | 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 by | 171 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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Less Than A Year Ago…

Posted on December 13, 2012 by | 32 comments

If I don’t immediately take notes during and after my typing sessions with Emma, I would wonder whether the words she typed were a figment of my imagination. There is something almost magical seeing and reading the words typed from someone who does not, or does not easily, communicate with spoken language.  It reminds me of the time I went to a lecture given by Soma Mukhopadhyay with her autistic son, Tito who began answering questions from the audience.  Tito is non-speaking and has a great many stims, yet translates his beautifully eloquent, poetic  thoughts into words and has no problem answering any question posed.  It’s often a disconnect for the neurotypical person watching someone who isn’t able to verbally say what they are thinking, yet has no trouble writing their thoughts, which in no way match the presumptions we, NTs tend to make.  If you’ve never witnessed something like this, it can be pretty mind-blowing, which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.

Last night I began Emma’s session with a question.  It’s the same question I always ask her.  “Hey Em, how about after you sing this song we do a typing session together?”  And Emma answered, as she does every time I ask her this question, “Yeah!  Typing session with Mommy!”  Emma’s excitement, in and of itself, makes me incredibly happy.  That she’s interested and (I think) looks forward to our sessions as much as I do, makes me believe we are on the right track.  When we went into the room, now dubbed, “Emma’s office” I tried to think of a question it seemed likely Emma would know the answer to, but that if she typed it out, I would be surprised.  As we are leaving soon to visit her Granma for the holidays, I said, “When we fly to Granma’s we have to first take a taxi to an airport.  What’s the name of the airport we usually go to?”  Without hesitation, Emma typed, “La guardia”.  Wow!  Just wow!  I then asked, “There’s another airport near La Guardia, we don’t usually fly out of, but what’s the name of it?”  Emma, again, without hesitation, typed, “kennedy”.  Whoa!   Then I threw her, what I thought would be, a curve ball and asked, “When we fly out of La Guardia we always take the same airline to visit Granma.  What’s the name of the airline we always take?”  Emma wrote “United”.   EEEEEE!!!!!  Snoopy dance.  Give me a moment while I hyperventilate.  Whooooo, whooooo.

Emma went on to tell me what state and city we live in, the name of the state we were flying to and when I asked, “What’s another name for the city we live in?  It starts with an M?”  Em immediately typed “Manhattan” though she forgot the h and one of the ts.  I followed up with, “And what’s the neighborhood we live in?”  Emma, again without hesitation, typed, “Chelsea.”  Taking another deep breath.  For those of you who are doubting what I’m writing, I understand.  Really.  I do.  As I wrote above, I actually had to take notes during our session, because I knew I would come away as if in a dream.  (Ibby suggested I record our sessions together and I keep forgetting to do that, but I have to remember to from now on.)  That’s what it feels like, a dream.  I absolutely believe in my daughter’s competence.  I believe she is far more competent than most people who come into contact with her do.  I do not for a second doubt that she has a busy, complicated and fascinating mind, filled with thoughts, ideas and knowledge I can only guess at.  But to know this, to believe this, is different from being shown this.  I don’t mean to offend any of you reading this who are non-speaking and communicate by typing.  I don’t mean to offend, really I don’t.  I hope that were Emma to ever read this she will understand what I’m trying to say.  This is not about Emma’s limitations, either intellectual or otherwise, this is about my own.

For all you neurotypicals who can speak, humor me for a moment.  Think about how you would feel if you could not speak.  Think about all the things you know, but couldn’t say.  Now imagine if you were told something simple, like the city and state where you lived over and over, repeatedly, day after day.  Just think about this for a second.  Close your eyes and try to imagine what it would be like to not be able to speak.  Imagine that well-meaning people tried to help you speak through repetition and you were not allowed to move on until you were able to say these things being “taught” aloud.  Imagine how you would feel were you never able to say these things, so you weren’t allowed to move on.  It was assumed that because you couldn’t say them, you must not KNOW them. And yet, all this time…   all this time you really did know these things.  Not only did you know these things, but you knew so much more.  But no one believed that you did.  No one treated you as though you did.  Less than a year ago I assumed Emma did not know.  Less than a year ago I assumed Emma did not understand.

Less than a year ago…

Emma waiting for the school bus with her string

*Em

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An Unexpected Response and The Importance of Trust

Posted on December 10, 2012 by | 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 by | 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 by | 64 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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