Tag Archives: Peyton Goddard

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

 

Autism and Human Rights

Peyton Goddard gave the keynote address at the 2013 TASH Conference in Chicago on December 11th, 2013.

You can watch, hear and read a transcript of her speech ‘here‘.  Peyton does not speak, but instead types to communicate.  I was fortunate enough to be in attendance at the TASH Conference and hear her speech.

“Understated and devalued, I was segregated and secluded, walled-in for controlling decades, and repeatedly traumatized by bullying abusers.”

Peyton describes her existence prior to learning how to communicate through typing.

“I’m less. I’m freak. I’m throwaway trash. Daily, for decades, I try but cannot be the person you want me to be.”

“Your answer was to fix me, to change me to be what you feared not. To cure me of being ME. I reply that YOU were less than I needed.”

Read that again – “I reply that YOU were less than I needed.”

“Segregation is the beast whose bite cheats us all. The isolation of people different renders you and me strangers. Reality is that you are me and I am you.”

At the crux of any prejudice is the idea that “I” am different, separate and, ultimately “superior”.  To live with this delusion, we must keep ourselves apart from those we believe “inferior”.  If we live together, in a world that embraces all humans, we lose our superior/inferior status.  This is the world I strive and hope for.  This is the world I want my children to inhabit.

*For more of Peyton’s wisdom, read her book, I am intelligent.  I interviewed Peyton and Dianne for the Huffington Post.  You can read that interview ‘here‘.

Peyton and Dianne Goddard ~ TASH 2013

Peyton and Dianne Goddard ~ TASH 2013

“People Have to Listen”

Stop Hurting Kids is a campaign to “end restraint and seclusion abuse in schools.”  Restraint and Seclusion: Hear Our Stories is a 27 minute film by documentary filmmaker, Dan Habib.   Creator of Including Samuel and Who Cares About Kelsey?  Dan Habib is “Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.”  The transcript of Restraint and Seclusion is available here.

For those of you who do not have the time or inclination to watch the film, here are a few quotes from it, which I hope will serve to pique your interest enough to watch the film in its entirety.  Because this is happening all around us, because this could be one of our children, because we, as a society, must become aware of what is going on, because without awareness and protest this will continue, because prejudice and brutality are not the answer, because as Barb Rentenbach continues to remind us, I might be you, because as my daughter, Emma has said on numerous occasions, “People have to listen.  Mommy, people do not listen to Emma.”

“The National Disability Rights Network reported that in recent years, the misuse of restraint and seclusion has resulted in hundreds of deaths and thousands of injuries.”

Peyton Goddard – “It was bruted power jired by purses wrongfully called teachers trying to beat I. This war wasted my rest. The sweet in I evaporated out.”

Helena – “He slammed me up against the wall, arm barred me across the throat and lifted up so I couldn’t breathe. And then whispered, “How am I supposed to talk to you nice and slow so you can understand?”

Wil Beaudoin – “One particular day we went to see my son and we were going to give him a haircut. So, we took off his shirt and he was covered with bruises and abrasions, fifteen to twenty on his body…everywhere.”

Peyton Goddard – “Fright opted I timid, silent and unable to fight back. Telling myself sweet lies that the tortures did not matter.”

Brianna – “I did not have a speech-generating device. Good evaluation would have made that happen. I tried to tell my mother. She did not understand me or she thought the teachers knew everything.” 

Peyton Goddard – “Try to see potent powerful potentials in each pierced person. There you will free their gifts. There I can feel I’m treasured. There nary I’m fret. I’m ready. Are you? Try please.”

Larry Bissonnette, Peyton Goddard and Tracy Thresher at TASH

TASH 6

 

The Wisdom of Peyton Goddard

Peyton Goddard, wrote a memoir with her mother Dianne Goddard and Carol Cujec entitled, i am intelligent.  It is an unforgettable book.  Recently, Peyton gave a presentation in San Diego, where she typed, “After decades of torture, still each dawn I struggle to feel my worth.”  You can read her entire presentation ‘here‘.

“After decades of torture, still each dawn I struggle to feel my worth.”

Peyton was not tortured by her autism.  Peyton was tortured by non autistic people who cruelly and viciously hurt her over and over.  People who used the fact that she could not use her voice to speak to protect themselves.  I would like to believe we are moving away from a world and society where abusing people we have deemed “inferior” is done.  I would like to believe that, but I cannot.  The abuse of Autistic people at the hands of those who care for them, whose job it is to help them, continues.  The abuse of Autistic people by society, continues.  The abuse of Autistic people by those who are either ignorant or misinformed continues.  The abuse of Autistic people by those who pretend it isn’t abuse because they choose to believe Autistic people are incapable of feeling or really understanding what’s happening to them and therefore it’s okay, continues.

“Estimate I that anger in this pesty world is because pierced persons think hurting others will strip their own hurts away.” ~ Peyton Goddard

In her book Peyton writes about forgiveness.  Forgiveness of those who have hurt her the most.  Peyton Goddard is leading the way, with wisdom, kindness, forgiveness and compassion.

Peyton Goddard – a non-speaking Autistic woman, assumed incapable, presumed incompetent – has a great deal to teach us.

Three Non-Speaking “Teachers”:  Larry Bissonnette, Peyton Goddard & Tracy Thresher

TASH 6

Letters, Photos, Autism And Jerusalem

I have been meaning to quote from a letter I received last week from Peyton Goddard and another from her mother, Dianne Goddard.  Peyton and Dianne Goddard wrote a book, I am intelligent, which I posted a couple of weeks ago, since then I am honored to be in communication with both of them.  Click ‘here‘ to read that post again.  I asked them for permission to quote from their letters here.  They have agreed.

This is part of an email Peyton wrote me, responding to the post I wrote about her book and labels.

“Pleasured I am pointed to hearing your understanding that lasted, large, limiting, linear labels are hulking jungles greeted by limitations. Keeping one limited is to measure there wastes of their great gifts.  One’s tears taste lime. Understares, terror builds. One washes their tears by return try freed to their Creator, as rest there they hunger. Polling my limits I kettled boiling red, as heard I’m trapped. There I wasted my lived times in pity. Limiting labels murder poignancy of sweet journey. I watered my liking to keep open living by questing for others better lives poignantly sweetened by encouraging swiping labels away. Wastes caging pertinent persons must stop. A trepid heart needs verses assuring “I’m deared by this very looking world. I can be me. My heart need caw no longer.” There joy is heard. These awesome pertinent persons can be freed to limitless. It greeted I hurrah…”

And this is part of an email from Peyton’s mother, Dianne –  

I spent much of Peyton’s first twenty years deliberating and comparing the severity of differences in persons labeled with disabilities that I met or read about. In the early years, this private, internal discussion between me, myself and I, offered some relief to my worries over Peyton’s delays and differences, as her challenges did not seem insurmountable if I therapied her enough. And professionals agreed. In the days before Internet could bring me many children to compare her levels of functionings and measured progress to, I found I could usually comfort my fearful self with observations that the few children we met with disabilities seemed to have much greater challenges than hers. A case in point was (removed the name for privacy’s sake) who was several years younger than Peyton. When talkative W. was three and not walking, he was tested. Duchene’s muscular dystrophy was diagnosed.  Debilitating muscles until death in his early twenties was the best case scenario. Pity him I did. And compare I did. While Peyton would be continuing to improve, he would be suffering a slow and sure death.

Not so. Peyton lost functioning and filled with a suffocating sadness she could not begin to shake for well over a decade. Yet W. lived happy. At his celebration of life five years ago I reflected on my foolish attempts to comfort myself by comparing the severity of challenges, and how thankful I am for new understandings of acceptance and valuing Peyton for ALL she is. Above all, I am comforted knowing she can really feel my love finally.”

The Icare4Autism Conference begins tomorrow.  More on that later.  To end, a few more photographs from our adventures in Jerusalem.

The Dome of the Rock  

Fragment of an Ancient Column in the Courtyard of The Dome of the Rock

Old Tombs in Valley of Jehoshaphat

Outside Zion’s Gate in the Old City

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Continuing The Conversation…

Be honest.

I’ve written about this before.  Writing, writing that really reaches out and pulls others in is about honesty.  Even if you write fiction, it’s still about honesty, the feelings portrayed, the dialogue;  it has to be honest for those of us reading or we can sense it.  We know something’s a little off.  Sometimes it’s hard to pin down, it doesn’t seem obvious right away, but I’ve found it’s because I don’t believe what I’m reading.  It’s not entirely honest.  I have had this experience with my writing.  I have written things and then wondered why it didn’t feel quite right and it’s because I either hadn’t dug deep enough or I wasn’t being honest, which in many ways is the same thing.  Self dishonesty is one of the most difficult things to spot.  I spent years and years in a place of deception, of hiding from myself, my feelings, my desires, my ambitions.  I shut down.  I hid and it caused great pain, not just to me, but to those who loved me.  It’s hard work to be honest.

A couple of days ago I wrote about labels and my struggle to understand how and why they do not apply to our Autistic children.  Why they cause damage, why they are destructive and not constructive.  As is often the case, I use this blog to figure things out.  I think of it as my sketch pad where I play with ideas and then either move on to the next sketch or work and refine.  The pieces I work on a bit more, I often submit to HuffPo, I think of it as filling in with color and others I keep working on with the hope of putting them into a book, a finished canvas (this last part is very hard for me, sketching is easy.)  But as I’ve also said, I’m a SLOW learner so sometimes ideas will fall easily onto the page, or in this case the screen, but not move beyond it.  And that’s where the work comes in.  Because ideas are great, but if I can’t take them to the next level they won’t go anywhere.  Some things seem to take me awhile to really get, to fully  incorporate in a way that they become less an idea and more a knowing.

So it was this morning as Em and I made her breakfast.  I was thinking about labels and why they matter or don’t matter and why they bother me and cause me to ruminate and at a certain point I tired of the ongoing controversy raging  in my head, so I forced myself to shift my thinking away and be present for my daughter.  I was able to and eventually off she went with Joe onto the camp bus and I turned to my email and there was Outrunning’s latest post.  Now for those of you unfamiliar with Outrunning The Storm, click on the name, I’ve provided the link.  Did you read it?  The post – How Do We Talk About This?  I’ll wait.

I’m waiting…

Okay.  So there it is.  For those of you who didn’t click on the link, skip to the next paragraph, but for those who did, and if you’re like me, you also clicked on the comments and saw the first three from Moms who got what Outrunning was saying, who’ve been on the receiving end of exactly what she’s referring to and get it.  They get it, or so it seemed to me when I read their comments.  And then there’s my comment.  Yeah.  Okay.  So I still have some work to do.  I’m pleased to say that I did go off after leaving my comment and sobbed.

I’ve been very weepy lately.  Partly I blame my husband’s absence, he and Nic remain in Colorado while Em and I are here in New York, so I’m a little off-balance.  There’s a lot going on this summer and at times it all feels overwhelming, in a good way, but never-the-less overwhelming.  But I think most of my emotional overload is due to the fact that Peyton and Dianne Goddard’s book – I am intelligent – has stayed with me, in addition I received an email from Emma (not my daughter, another Emma, who two years ago began to communicate through typing and has a blog) that both delighted me and filled me with emotion.  I asked her permission to quote her and she has given it, but I want to be sure I also respect her and so will quote just two sentences.

“me name is emma and i am like peyton.”

And this:

“i am pleased if our emails teach people how to measure words or personal stories in front of people they think cant communicate..

Emma”

Take a deep breath.  Okay.  Be honest.

I spent years doing this to my daughter, exactly what Emma is pleading that we not do.  It has only been within the last year that I have stopped doing this.  I have to make a concerted effort to refrain from the temptation.  So I read Emma’s words again.  I have memorized them.  “I am pleased if our emails teach people how to measure words or personal stories in front of people they think can’t communicate.”  Read that again.  There is no condemnation, no criticism, just a heartfelt request.

We are in this, all of us, together.  Your version may be different from mine, you may have children, you may not, you may have someone you love who is Autistic or you may not.  You may be Autistic, you may not.  But we are all, each one of us in this together.  There are Autistics calling out, trying to be heard, blogging, talking, communicating, asking for respect, asking for a chance to join the conversation.  There is no conversation if a whole group is silent.  Whatever group that may be.  We are ALL served by listening, by sharing our experiences, by trying to understand.  As human beings it is our obligation to be honest, to try to dig deeper, to listen.

Alone we can do so little, together we can do so much.”  Helen Keller

Richard, Me & Em – 2003

Nic and Emma – 2011

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