Tag Archives: FC

FC and RPM

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

 

How We Got Here

I was asked recently to talk about the process that led to my daughter being able to write the insightful posts she’s been writing of late.  And while I initially thought I HAD written about all of this and so much more throughout this blog, upon further reflection I realized I have not written about the process in a condensed form, so will attempt to do so now.  (Wish me luck.)  For those of you who are interested in a more detailed, chronological version of what we’ve been doing that has led to Emma writing posts like ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this’ and ‘this‘ for this blog (and to see the daily progress) you can enter terms such as, RPM, Halo, Soma, communication and non-speaking in the “search” box or just begin reading the posts starting in mid-September until now.   For those of you who are REALLY curious, you can go back to October, 2012 when I went to the Autcom Conference.

There’s no way to say that on such and such date everything changed.  Like so much in life it was the incremental, seemingly, not-so-important things that occurred one after the other that then allowed for the next thing and the next until there was that moment we remembered and now look back upon and say, “oh yes, that was when everything shifted.”  Our version of having a – Helen Keller moment –  the day when W-A-T-E-R suddenly made sense, didn’t happen.  At least not like that.  There wasn’t any ONE moment when it all changed, but more a series of moments one after the other that led to a number of “OH!” moments.

One of those “OH!” moments was when Emma went to see Soma Mukhopadhyay (I wrote about that session ‘here‘) and we sat with tears streaming down our cheeks because Emma knew how to spell October and that it was a month in Autumn.  Another moment, previous to that, was when Emma was working with Pascal (documented ‘here‘) over a year ago.  Pascal “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.”

In retrospect it seems incredible that all of this came as such a shock to us, but it did.  As I’ve said before, we knew nothing.  Literally.  Nothing.  But we thought we knew a great deal.  We knew what we’d been told up until that point and then it seemed as though over night, we realized everything we thought we knew was wrong.  So it was little moments just like these, over and over and over again, that continued to happen leading up to the first time I took Emma to see Soma in Texas (described in more detail ‘here‘, ‘here‘, ‘here‘ and ‘here‘) last September and then returning home and not being able to replicate what Soma was doing. But I was so determined and had to fight how depressed I felt because Emma seemed unable to write words that I’d just seen her write with Soma and yet with me, nothing.  Nothing at all.  There was self-doubt and fear, just tremendous fear that I wouldn’t be able to learn how to do this.  Fear that I would never be able to communicate with my daughter in the way I witnessed her communicating with others like Soma and Rosie and Pascal and Harvey and Leah.

So I had to begin at the beginning with simple choices and felt so impatient and so worried that this was how it was going to be for the rest of our lives.  But I kept showing up each day and making us do our “study room” together setting a timer for ten minutes and then 15 and then 20 and eventually up to 45 minutes and making lesson plans and wondering, wondering, always wondering whether she would be able to get to the point where she could trust me and write with me as I saw her writing with Soma.

I found a woman in NYC whom Soma had trained and we began taking Emma to see her too and I studied the videos of Soma working with Emma and I made notes and spent hours and hours pouring over them and making lesson plans and practicing.  I wrote out scripts of exactly what I would say during our “study room” session, leaving nothing to chance and I kept at it. Finally, after what seemed like an eternity, but actually it was more like six weeks, I arranged to have a Skype call with Soma, having sent her a video of me working with Emma.  Soma advised me to ask her one open ended question at the end of each lesson, which I hadn’t dared do as the one session I had, it was a disaster and she wouldn’t answer me.  I said as much to Soma.  I told her I didn’t think we were ready for that and Soma said, oh yes, but she’s ready.  You must ask something simple at the end of each lesson. So I did.  I did because Soma was so matter-of-fact and sure that this was what needed to happen next.

Emma began answering these open ended questions, at first with a few words and then with longer, more complex sentences.  I began to ask clarifying questions and now…  now look at her go!  It makes me cry thinking about this actually.  I couldn’t have known it would all happen as quickly as it did.  At the time, the process seemed to take forever, but looking back one’s perspective is different and I see it as very fast and I’m just so grateful for all that work, for all those days I struggled and cried to my husband and didn’t believe it would ever be any other way…

By the way, I DO think those Helen Keller moments that Hollywood then immortalizes, has all of us very impatient and thinking life is like that. Of course you and I know, life isn’t so simple or easy, nothing ever is. There’s work, hard, hard work and hours upon hours of showing up over and over again, and then slowly change occurs and it seems incredible, even miraculous!  But no one sees all that work, all those days when things didn’t go well, all those days when tempers flared, when there were tears and frustration and doubt and even disbelief that it would ever be different… until it is.

To all of you reading this – this has been my experience, as a parent, as someone who has always been terribly impatient, but determined.  Emma’s experience has been different (I’m hoping she’ll want to write about that at some point.) Everyone’s experience will differ, but perhaps, just perhaps, my experience will be useful to those of you just beginning, or will bring a smile of recognition to those of you ahead of me, either way, none of us need do this alone.  I didn’t and I am so grateful to all of you who have helped me help my daughter get to where she is now.

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

“Music is Stars for your Ears”

Profound. Poetic. Always unexpected. When Emma writes (in this case she was typing), she is able to express herself in a way that she isn’t able to with speech yet. But what she has to say is always (to me at least) profound, poetic and unexpected.

Take that above line for example. As she slowly typed, letter by letter and got to this point: “Music is star…” I wondered, where is she going with this? And no matter how many times I witness her write, I never cease to marvel at what she ends up saying.

It’s Richard here. Ariane has been traveling for the last two weeks doing her Holiday Trunk Show in Chicago and for the last day today in Aspen. She hates it. She is an incredibly talented, award-winning jewelry designer. Just take a look here and see for yourself. She began designing jewelry after some prodding from me because she had become so obsessed with autism and (many years ago) with finding a cure, that she was stressed out to the snapping point.

Ariane went to school for fashion design with a bunch of today’s top name luxury designers–an exclusive class at an exclusive school. But she hated the fashion world. I suggested that she channel all that talent and creativity in a different direction, so she wasn’t spending every waking moment of her life reading books about autism and searching the Internet for the latest studies and therapies and anything else under the sun she could discover about autism. That inexhaustible search led her to discover the blogs of autistic adults, films like Wretches and Jabberers, Supported Typing, Soma’s RPM, the Intense World Theory, and a hundred other things that have completely transformed our family in the most wonderful way possible. And by sharing her/our journey on this blog, I believe she is making the world a better place, day by day.

Ariane would never make such claims about herself. I’m happy to. She invited me to write a guest blog today while she is doing her trunk show. I’m certain she thought it would be all about Emma, but “heh heh” as Ibby would say.

If Ariane had a partner that handled the business side and left her free to simply design jewelry, she’d probably still be having fun with it. But these trunk shows are definitely a drag. I know for certain that she would much rather spend the day writing a blog post, replying to comments, working on one of the books she’s writing about her/our journey, reading more books and articles, chatting with her friends, getting a manicure–basically anything other than sitting around in a hotel room, waiting/hoping for people to stop in and buy some of her amazing designs so she doesn’t hate being there even more. So if you’re in Aspen, stop in and say “hi!” Oh, and bring your wallet. If you’re not in Aspen and love jewelry, or just love Ariane, send her a note, or a message or call, or Skype–or buy some jewelry after browsing on her website. She would never say such things here, or anywhere but once again “heh heh.”  I, for better or worse, am and shall always be: The King of Bluntness.

Now, after that shameless plug, let me talk about the session I had with Emma and “B”, who helps with Emma’s written communication, using Soma’s RPM method. Yesterday was a milestone because Emma used a keyboard throughout the entire 45 minute session, instead of the stencil board or letter board she usually uses. This was clearly a stressful adjustment for Emma, but she soldiered on bravely, and as usual, wrote some amazing things. Profound. Poetic. Always unexpected.

Rather than editorialize, I’m going to relate the entire session, using B: and E: for Emma. Some of B’s statements are paraphrased. All of Emma’s responses are exactly what she wrote, because the keyboard was connected to an iPad and it was all recorded.

B: What history topics are you interested in?

E: music, history, country, the world, the playground

B: Tell me something about music.

E: Music is stars for your ears.

B: (B gives a lesson about the origin of blues music with slavery) What kind of music are we talking about?

E: blues

B: Tell me something about our country in the 19th century as opposed to the 20th century.

E: there were slaves

B: What can you say about freedom?

E: less freedom when you are someones slave.

B: What do you think singing (the blues) did for them (slaves)?

E: how about it helped the crops grow.

(There was an interesting blurt Emma did here: “You left him there to die!” from her favorite movie Two-Headed Shark Attack. It speaks to me of injustice, self-interest and the horrifying results)

B and Emma then did some “Call and Response” blues-style singing together.

B:  What would you say about that?

E: when you call your friend they should not ignore you.

B: Can you come up with a call and response song?

E: I like to eat cake

the sweet is so nice

They sang these verses together a few times (ultra-sweet!).

B: Where in the country does the blues come from?

E: south

B: Do you have something to say about this?

E: there is fun music in the north also.

B: (B plays a video of BB King singing “Stormy Monday”) What do you think about that?

E: stormy tuesday it was. (the previous day was Tuesday and it was stormy).

B: (B tells a story about a teenage boy who was lost and later found by a homeless man who called the police and contacted his mother. The mom was very grateful and rewarded him.)

B: What did I say about the man?

E: homeless.

B: The mom was grateful. Why?

E: he found the son.

B: Years later there was a news article about the man whose name was Leo. Another man named Patrick used to pass Leo every day on the way to work. They began chatting. One day Patrick gave Leo an offer and he had two choices:

1. $100

2. A laptop, lessons everyday for an hour in computer coding.

(Leo took door #2, and in the article Leo coded an app later.)

B: What was one of the options?

E:  money

B: What do you think about the story of Leo getting lessons and coding the app?

E: he needed to get rewarded.

B: Any message for the world about anything?

E: hearing my response to your call is like being at a fun amusement park.

Image

And being present for all of this was like being in a fun amusement park too.

“Music is Stars for the Ears.”

Yes, it certainly is Emma. It certainly is.

Happy holidays to all! See you Saturday Ariane. Emma and Nic are counting the days and so am I!

Facing the Skeptics

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

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