Tag Archives: Facilitated communication

EEEEEEEEEEEEE!

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

Excitement, Impatience and Waiting

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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A Revised Interview With Amy Sequenzia!

After posting last week’s interview with Amy I asked her if she was comfortable with me asking some follow-up questions inspired by her answers to my original questions.  She, very generously, agreed.  This is the new extended interview! Amy talks about her poetry, (including a poem about having a seizure) writing, being in an institution and how it feels to be ignored and thought incompetent by so many.  This interview has also just been published on Huffington Post, click ‘here‘ to read it there and do “like” it, share it and tweet it.  We need Amy’s voice to be heard to counter the massive amounts of misinformation out there.  For all of you who wonder what you can do – share Amy’s voice.  Get people to read what she’s saying.  

Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, agreed to an interview with me. Amy is someone whose work I have been following since I met her this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams, can be purchased by contacting Amy here. Amy’s writing and poems are regularly featured on Ollibean.

2012-09-10-mail.jpegAZ: Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate. Can you tell us how that came to be?

“I think it was in PA, when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003, and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators, was encouraged to write to newspapers and later for blogs.”

AZ: How old were you when you began writing poems?

“I wrote some things soon after I learned how to type that my family thought were poetic. When I was about 16 I had a good teacher, and I wrote poetry with her. But then she left and for a while I did not have good facilitators.”

AZ: Is poetry your preferred way of expressing yourself?

“Sometimes it is easier to write in verse. That happens when I want to write but the subject is upsetting or if I am hurting. Sometimes I just feel inspired.”

AZ: What were your dreams for the future as a child?

“I had many. I was surrounded by ableism, although I did not realize that back then. I remember two things: I wanted people to know I was smart, and I wanted the other kids to play with me.”

AZ: You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?

“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”

AZ: Do you have memories of that happening when you were younger, before you could communicate through typing?

“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.
Sadly, it still happens.”

AZ: Were there things you did, sounds you made, actions you took when this happened?

“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”

AZ: How did you learn to communicate through typing?

“It was a long and emotionally-draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”

AZ: From the day when you were 8, how many months or years did it take before you were able to type your thoughts and feelings, your opinions and able to converse, or was that immediate?

“It was immediate. But soon I began having seizures and for many years I made almost no progress. After that, finding good facilitators became harder. I can type with some people now, still hoping to be able to type with more.”

AZ: There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?

“It is how I communicate. It means it is how I can have my voice heard.

FC is a process, with clear steps and a final goal — independence. It is not easy and many factors play a part in the process.

As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”

AZ: For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?

“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world. But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”

AZ: Have you ever had a bad facilitator? If yes, how so?

“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”

AZ: How did you cope with that?

“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”

AZ: How long did it take you to learn to type?

“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”

AZ: You mention that you have other disabilities. What are they and how do they impact your life?

“I have cerebral palsy and epilepsy. I also have dyspraxia. Movement is hard for me. I am unbalanced and I tend to bump on things; I have many bruises. I cannot go down stairs safely by myself. My body takes a long time to respond and I fall easily.

My fine motor skills are basically non-existent and get spastic sometimes. I don’t feel parts of my body as I think other people do.

I can deal with all that. But epilepsy is the worst. I have seizures almost every day, without warning, at any time. It is not nice.”

AZ: Can you talk about what it is like having a seizure? Do you have any warning?

“I wrote a poem…

Seizures

Seizures are like falling into
a sad and dark hole.
Rest is necessary and no sense
is strong enough
Yet the senses are very awake.
Beside me is my soul
so tortured by synapsis
of unconsciousness.
Seizures are hopelessness
going deep into the zone
of nothing.
A giant man coming after me
vital, intense
like an entity of torture.”

Copyright 2005 by Amy Sequenzia

“It is scary, I feel like I am falling in a deep, dark hole. I only realize I had a seizure when I am back, after a while. I also have partial seizures that are like hallucinations. I don’t remember anything about those.”

AZ: Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?

“Give your child every possible chance to communicate. Don’t believe in every article or every ‘expert’ who says FC does not work. Go to the Institute on Communication and Inclusion’s website (ICI Website click  here) and question them yourself. Being skeptical is okay. That’s why Dean Biklen and the others at the institute do such a good job documenting everything.”

AZ: My daughter Emma is just learning to read, write, and type. She is extremely resistant, however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?

“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.

I don’t know Emma. Maybe she just needs some time.”

AZ: When were you in a school/institution and for how long?

“I was 6 and I asked to leave after I learned how to type, when I was 8 years old.”

AZ: Can you describe that experience?

“Painful, isolating, lonely.”

AZ: What are the most common misperceptions people seem to believe when they first meet you?

“That I am ‘not there,’ that I am not smart or that I cannot think by myself, that I am a child and that I deserve pity. None of these are true.”

AZ: If you could write a script for a stranger meeting you for the first time, what do you wish they would say?

“Not what they would say, but how they would approach me. With respect and interest. Not ignoring my disabilities or how I look and act — I am not ashamed of that — but wanting to know what I think, how I feel.”

AZ: What is your living situation like now?

“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”

AZ: Did/do you have a mentor? If yes, can you talk about that experience and relationship?

“My mentors are people who show me the many possibilities of my life. They don’t always know that.”

AZ: I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?

“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”

“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”

Amy’s voice needs to be heard.  Please help me inform the misinformed, educate those who are being given incorrect information by any number of well-meaning people not just in the field of Autism, but all fields of  “Mental Health” as well as Education by sharing Amy’s words.  Email this, share it on Facebook, tweet it.  Amy has given interviews to others as well as written a great many pieces for other blogs.  I am listing but a few of them below.  

An Interview With Amy Sequenzia

Amy Sequenzia, a  non-speaking Autistic self-advocate,  poet and writer agreed to an interview with me.  Amy is someone whose work I have been following since I met her, this past spring.  Her powerful book of poems, My Voice: Autism, Life and Dreams can be purchased by contacting Amy ‘here‘.  Amy’s writing and poems are regularly featured on Ollibean.

Amy Sequenzia

AZ:  Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate.  Can you tell us how that came to be?

“I think it was in PA when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003 and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators; was encouraged to write to newspapers and later for blogs.”

AZ:  You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?

“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”

AZ:  Do you have memories of that happening when you were younger, before you could communicate through typing?

“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.

Sadly, it still happens.”

AZ:  Were there things you did, sounds you made, actions you took when this happened?

“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”

AZ:  How did you learn to communicate through typing?

“It was a long and emotionally draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”

AZ:  There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?

“It is how I communicate, it means it is how I can have my voice heard.

FC is a process, with clear steps and a final goal – independence. It is not easy and many factors play a part in the process.
As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”

AZ:  For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?

“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world.

But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”

AZ:  Have you ever had a bad facilitator?

“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”

AZ:  How did you cope with that?

“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”

AZ:  How long did it take you to learn to type?

“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”

AZ:  Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?

“Give your child every possible chance to communicate. Don’t believe in every article or every “expert” who says FC does not work. Go to the Institute on Communication and Inclusion (ICI) and question them yourself. Being skeptical is ok. That’s why dean Biklen and the others at the Institute do such a good job documenting everything.”  (Click for the link to the ICI website)

AZ:  My daughter Emma is just learning to read, write, and type. She is extremely resistant however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?

“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.

I don’t know Emma. Maybe she just needs some time.”

AZ:  Do you remember what it was like in the beginning for you? Were there things that could have helped you more that what was done?

“I wanted to type. I could choose food, clothes, anything. Then I began typing my thoughts. Maybe Emma is not interested yet. It has to be her choice, at her own time.”

AZ:  What is your living situation like now?

“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”

AZ:  Did/do you have a mentor? If yes, can you talk about that experience and relationship?

“My mentors are people who show me the many possibilities of my life. They don’t always know that.”

AZ:  I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?

“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”

“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”

Thank you so much Amy for being willing to answer all my questions.  Please help me thank Amy, everyone!