Tuesday, October 26, 2010

Typing can develop abilities other than communication.

“Set work” is the term for the structured typing practice sessions that helps both the typist and the person who is supporting the typist. There are stages of set work that direct the non-speaking person to complete various tasks ranging from identifying pictures using type-written words to making open conversation by typing full sentences.  Michael and I have mastered most of the stages of set work together. 

It seems to help Michael when I start our sessions with a “fill-in-the-blank.”  I write the statement.  Michael “copy-types” it and then completes it with his answers. 

The topics I want to talk about today are _________ and __________. 

Michael completed the statement with: afraid and shave.

S: What are you afraid of?
M: I want to say that I am afraid of Tony shaving me.
S: Who do you want to help you shave?
M: Steve
S: Ok.  I will help you shave tonight.  Is that okay?
M: Yes

Kayla Takeuchi (Kayla’s Voice: empowering people with autism at www.newgroundpublishing.com) has been typing talk since she was 16.  She is on her way to graduating from high school and plans to attend college.  She persevered even though some people didn’t believe she had the skill to type her own words.  These people, even professionals such as Speech Therapists suspected her facilitators were moving her wrist for her.  Today, after years of practice, Kayla can type independently.  She occasionally gets stuck and needs the light touch from her facilitator. Once assumed to be “mentally retarded” by school officials and incapable of learning, she has shown us that for her, instead of leaving her completely cognitively impaired, autism has affected her ability to coordinate her body. 

Not too surprisingly for most of us, Kayla discovered that she became better at typing the more often she typed.  What is perhaps more surprising is that she became better at activities that require the use of her hands.  She enjoys hobbies now, and jewelry making is one of her favorites.    She’s able to thread various sized beads, even the smallest ones.  She says that typing helps her to feel more organized – clearly on many levels.  It has afforded her a greater life.

I shouldn’t have been surprised when Michael began shaving himself more efficiently.  His typing seems to be allowing him to use his hands in ways he hadn’t before.  For example, he can now cut his hot dog into small pieces.  Many of us wouldn’t see this as a great accomplishment, but it is for someone whose mom has had to cut his hot dogs his whole life and who wants to be more independent. 

I could never completely understand why Michael would allow some people to shave him and not others.  As with most of Michael’s “challenging behaviors” people tend to see Michael’s outbursts as him being oppositional, or at least trying to get out of something he just didn’t feel like doing.  When he would punch a hole in a wall or when he slaps a table or wall to create a loud bash, it’s not a stretch to hear yourself thinking: “he is being noncompliant” or more to the point: “he’s being a brat.”   That is, until you remember that all of us use the way we behave as a way to communicate.

When Michael typed that he was afraid of having Tony shave him, I realized the number of times many people in his life – including me - misunderstood Michael.  What if every time Michael acted out, we first thought, “I wonder what he needs” rather than jump to conclusion that he was being cruel just for the fun of it.  Before he could type his issue with shaving, he acted out his feeling by doing all he could to resist being shaved.  Once he could tell me that he was afraid, I not only could address his fear, but I could acknowledge it. 

So when I went into the bathroom and started shaving him, I wondered what he might be afraid of, and it came to me.  If we use light pressure with the electric rotary shaver, Michael’s longer whiskers get caught in the blade.  I know the feeling, and I don’t like it either… but I still need to shave.   I “problem solved” with him.  I showed him how to wet his face to soften the whiskers, and I showed him how to push the shaver closer to his face on his own.  When someone else is shaving you and they’re being tentative, there’s more chance that the rotary will catch whiskers especially under the chin and jaw line.

One week later, I watched Michael shave.  He is no longer afraid to push the rotary firmly against his face.  More than that, because he is less fearful of the blade catching his whiskers, he will shave areas of his face where he wouldn’t before – as long as he given support.  He has trouble looking in the mirror and shaving under his jaw because he gets disoriented.  Much like supporting him to type, if you touch the area on his face with your index finger, he can “feel” where to take the shaver.  Though he needs support from another person, he can handle the actual task of shaving on his own.  Not surprisingly, Michael doesn’t resist shaving any more.

Michael represents one of many people with autism that I’ve met who use typing to talk.  The more I speak to them, the more I realize how we perpetuate misunderstanding of nonverbal individuals by assuming that they are more “autistic” than human.  

Friday, October 22, 2010

A confrontation at Michael’s school

Michael, Tony and I were in a small conference room near the main office.  It was my first training session to help Tony understand how to give Michael the physical support he needs in order to type effectively.  After about 45 minutes, our time was almost up, and I had asked Michael if he had anything else he wanted to tell us.  I began supporting him to type, and I heard a voice from behind me.  “What is he doing?”

I looked over my shoulder and saw one of the school professionals.  I told the person that Michael’s using typing to talk.  “Michael, do you have anything you want to say?”  Michael started typing: I am very ha. Then he got stuck on the double p’s and began alternately typing the backspace and the p to correct himself. 

She said, “He has no idea what he’s doing.”

I was shocked – not necessarily that she didn’t believe he was typing his own words but that she would make such a statement and use such a derogatory tone right in front of Michael.  She’s known him for some years now.  It seems she was sure he wasn’t capable of thinking.

Stunned, I said, “You really think he doesn’t know what he’s doing?

She replied, “Yes.”

I repeated myself again.  “You really think he doesn’t know what he’s doing?

“Yes.  You’re doing Facilitated Communication aren’t you?”

“I’m supporting Michael to type his thoughts.”

She quickly came back, “Don’t you know about the research that says Facilitated Communication doesn’t work?”

“Don’t you know about the research that says it works for some people?  And I’ve met some of them.  I recently met a nonverbal 36 year old man with autism who started typing at 15 and now he travels to tell people it worked for him.  I’ve met others who’ve gone on to get their Masters Degree.” 

“Well, they had the cognitive ability for that.”

 “Michael has cognitive ability, too.”

I turned to Michael and his iPad. 

“Michael, type yes.”  He typed yes without my physical support.  “Michael type no.”  He typed no without physical support from me.  And then he typed mom and Tony without my support when I asked. 

Michael’s demonstration seemed to pique the woman’s interest. 

I continued.  “Michael learned how to type those words on his own after having 35 sessions together with me giving him physical support.  Our goal is that he will type all of his words on his own.  He needs our physical support to type now so his brain can have a chance to practice coordinating his thoughts with the movements his body needs to hit the correct keys on the keyboard.”

She sounded curious.  “Oh, he’s learning how to type.  That’s how all of us learn to type.”

“Yes.  I found out Michael had this skill when he was 8 years old, but someone from Rutgers’s University said Michael’s aides were moving his arm so the school stopped allowing Michael to practice.”

I don’t remember her exact words, but she said something like “Well that shouldn’t have happened.”

She got called away from someone in the hall.  “I gotta go.  I’ll have to check up on that latest research about Facilitated Communication.”

When she left, I asked Michael if he wanted to say anything about what just happened.

And Michael typed, “I want to say she is very wrong and I am not happy with her because she did not believe not believe that I can type she is the one who can not type.”

A walk through Michael’s school

Last week, the IEP team agreed that Michael could try using his iPad or Neo (keyboard) at school to communicate.  Yesterday, because Michael mom requested that his teacher allow me to visit Michael’s classroom, I helped Michael type on his iPad to communicate.

His teacher was apparently aware that my purpose for being there was to teach Tony how to use less pressure when he supports Michael’s wrist as Michael types one letter at a time.  I never used the term Facilitated Communication during the IEP meeting, but everyone including his teacher witnessed Tony hold Michael’s wrist as Michael typed.  My conversation with the IEP team was all about how we can fade the amount of support we give him depending on what he can do on his own.  For example, when he copy types, he only needs someone to lightly touch his elbow, but he needs someone to hold his wrist when he’s typing his original thoughts.  The goal is always that he will type on his own, independent of physical support from others.

When I reached Michael’s classroom, his teacher continued to be supportive of my helping Michael to communicate.  She suggested that Tony, Michael, and I find one of the available empty rooms in the school so we could concentrate.  Plus, Michael’s classmates needed the classroom for other activities. 

As I walked though the school halls, I remembered how much I admire educators and paraprofessionals who work with special needs students.   Michael’s school provides educational services to students in need of all sorts of supportive accommodations – from those stemming from orthopedic to neurological to genetic conditions – that affect mental, emotional, and physical ability.  The first time I visited this kind of school, I thought the people must be angels.  Their job is an incredible responsibility and it requires endless patience.  It also requires open-mindedness because you have to be creative in finding ways to teach someone who can’t easily understand you.

Truthfully, some of these students may never understand or perform past the level of what’s called “lower functioning”.   But how can we be certain which students have the capacity to perform to a higher functioning level and greater? Sue Rubin (http://www.sue-rubin.org/) was thought to have an IQ of 24 before she was introduced to Facilitated Communication.  She is currently a senior in college. 

We often judge students by the way they appear… as they drool and or hobble down the hall.  I wondered how many other students there might be as aware and capable as Michael and yet have never been given the chance to reveal their intellect.  Out of a school of let’s say 300 students, maybe none, but maybe one or five or fifteen or fifty.  Of course, that’s the reason we rely on research-based evidence that substantiates the statistical validity of educational and behavioral interventions.  If the research says the intervention “works”, than it’s ok to use it to teach students.  Some professionals stand by the following reasoning: If the student doesn’t learn, it must be the student’s lack of ability.  I’ve come to wonder if we haven’t done enough to question the validity of research. 

So Tony found us a small conference room in the main office.  After typing a few sentences with me, Michael typed, “I want to type with Tony now.”  Tony hit the ground running.  He had already attended a few trainings with Marilyn Chadwick from Syracuse, New York, and he knew the principles of FC.  He already understood that he needed to pull Michael’s wrist away from the keyboard between each letter.  Now Tony needed to understand how to ease up on the pressure so that Michael could initiate the movement to the next letter.  All Tony had to do is to feel Michael taking the lead.

I saw an aha moment in Tony when Michael’s work sheet said “3 types of colors are _______”  and Michael typed the letters y and then e, which are on the left side of the keyboard.  Because Tony had less pressure on his wrist, Michael was able to direct his own arm – with tony supporting it – to the right side of the keyboard to type the letter l. 

Wednesday, October 20, 2010

Michael now types a few words independently.

I knew Michael could “copy type”.  He would type out the titles of episodes of Thomas the Tank Engine he saw on YouTube and then bring his keyboard device to his mom as his way of asking her to download the episode.  Some people wonder why if he is able to “copy type” this way, then why can’t he type his thoughts independently, too.

Think about it.  Suppose you were given the following option. Either “copy type” three paragraphs about the benefits of believing in a God that were already written by someone else or compose three paragraphs about the benefits of believing in a God using your brain as your only resource.  Then suppose you were told you had 20 minutes to complete the assignment.  Which option would you choose? 

The point is that a non-speaking person who hasn’t been given the support to coordinate his/her body to type effectively experiences major writer’s block… writer’s block times a million.

As I type this paragraph, I’m noticing I’ve taken my writing ability for granted.  I’m not extolling my ability to write fantastically literate paragraphs.  I’m just noticing the mechanics I use to express myself through.

I can say the word to myself that “appears” in my brain and simultaneously coordinate my arms and fingers writing to move to type to put my thoughts into form. 
A non-speaking person with autism or other neurological disorder does not have this luxury.

While Michael and I were at the mall last week, after we bought our movie tickets, we had time to walk around with his mom.  We walked through the bookstore and stopped at the greeting card section.  Michael touched one of the stands of cards, so I put his iPad in front of him and asked him if he wanted to look at the books or the cards.  I waited for him to extend his arm to me as his signal that he wanted my support to type his answer.  Instead Michael extended his index finger and typed books without any help from me.  His mom and I were shocked.  Later, after the movie, his mom met us in the theatre’s lobby.  She put the iPad in front of him and said “what do you say to Steve?”  Again, instead of reaching for my support, he typed bye independently.

Short responses in the form of small words are possible for him now, such as yes, no, mom, and Tony.  But typing full sentences is a different story.  Our number one goal is that Michael will type on his own – independent of any physical support from someone else.  Until that time, we’ll give him the support he needs. 

Aside from typing with me, Michael has typed with his Grandmother, Mother, and Tony, his one-on-one aide at school. However, as is has happened with other FC users, Michael has grown most comfortable with singling out a person to support him to type, and that person at this point happens to be me.  I learned today that Michael has been resisting allowing anyone other than me to type with him.  He even hit his mom on the head twice when she asked to support him to type over the weekend.  He has also refused to take his iPad to school the past two days.  That means that Tony can’t practice typing with him either. 

It was time for Michael and me to have a conversation.  He couldn’t get the words out fast enough.  I didn’t bother reminding him that the needed periods at the end of his sentences.

S: Michael each person has to discover how to support you on their own. they have to feel it. but in order for them to discover that you need to let them type with you. what do you say to that?

M: I want to say that I want to let them type with me but it is irritating when they do not know what they are doing I get you to give them help but they don't under stand what you are telling them and I get even more angry help the because I can not explain it to them at all and I get so mad that I want to hit them you are able to under stand where i want to go on the iPad so it is easy for me to type with you right the way you hold and right the way you move with me I like to type with you because it is right to say what I want to say and I get to finally talk after all these years.

S: That was quite a series of statements.  what is the reason you have not taken your iPad to school the last two days?

M: I easy type say you and Tony is not easy to type with he pushes too hard and I can not type what I want to type you need to help him and he needs to type the way you type with me not to go to school with iPad until he gets help fast learner Tony is tony right to type with me like you me easy not hard you are getting even better at typing with me so you are the teacher for the others.

S: you are getting better at typing. you are becoming more coordinated. this means that in time you will be able to type with others and you will be able to type independently ... on your one. do you have any more to say about?

M: I want to and you to go to school with me tomorrow.

I’m going to Michael’s school tomorrow at 2:15, and Michael promised to take his iPad so he and I can help Tony support him to type with less pressure.

Tuesday, October 19, 2010

Michael’s IEP Meeting

“Annie’s Coming Out,” an autobiography, was written by Annie McDonald with the help of her facilitator, Rosemary Crossley.  It tells of Annie’s struggle to be allowed to leave a mental retardation institution.  She has cerebral palsy and couldn’t speak nor could she coordinate her body to point – let alone point to letters to spell words – until Rosemary Crossley, a speech therapist, believed in her.  In fact, when Rosemary first met Annie, she was barely responsive.  The staff assumed Annie would die within 6 months.

Even after she began to express herself with support from Rosemary and made it clear to those who believed she was the one spelling her own words (not Rosemary), Annie had to prove herself.  She had to pass several validation tests before she was permitted to leave the mental retardation institution.  Annie went on to receive a Humanities degree in 1993. http://en.wikipedia.org/wiki/Anne_McDonald

“Unless someone makes a jump outside the handicapped person’s previous stage of communication, there is no way the speechless person can do so.  Failure is no crime.  Failure to give someone the benefit of the doubt is.”

I met Michael’s mom and grandmother at his IEP (Individualized Education Plan) meeting last Tuesday.  Michael wanted me to advocate for him to be able to bring his iPad to school so his aide, Tony, could facilitate his typing.  Michael typed that he wanted to talk at school many times during our sessions together.  This IEP meeting was going to determine if that would be possible. 

This IEP was significant to the school system, too.  It was the last one before Michael leaves public school at age 21. The meeting was creating a document that described Michael’s strengths and abilities, and the document would follow him into the adult programs available in the state of Maryland. 

It came time for Michael’s teacher to report what she’s learned about him over the years, and she came to the topic of Michael’s communication skills.  Essentially she said, “Michael uses picture symbols to communication and he will follow voice commands.”  So that was the official story according to his IEP.

I raised my hand and asked if I could add more about Michael’s ability to communicate, and his teacher agreed to hear what I had to say.  I read a few of Michael’s typed transcripts about how he told us his lungs weren’t clear (blog entry called: He can now tell us when he’s ill.) and how his astute understanding of evil (blog entry: I want to have a full life.).  I never used the words Facilitated Communication.  I just said he described how Michael needs varying degrees of support to type words and sentences to communicate his thoughts and feelings.  I told the IEP team that Michael was able to type a few words independent of my support, too.

Surprisingly and without question or confrontation, Michael’s teacher agreed that Michael should bring his iPad to school and that she expected Michael to use it to communicate with her and Michael’s aide, Tony.

Tony, who was seated next to Michael at the IEP table, also happens to work part time afterschool with Michael as one of the employees of The Whole Self Center.  Tony works with Michael at Michael’s home and he is aware of Michael’s progress with typing.  Tony is still in the process of learning how to gauge the amount of support to give Michael as a facilitator.  Tony has never received consistent training in the process, but he does know the principles of FC.

Michael’s teacher asked Michael to type with Tony help.  I didn’t step in because I didn’t want the meeting to be about Michael proving himself or to lead the team to suspect that Michael could only type with me… and that therefore, I might be guiding Michael’s wrist.  And it turned out that Michael did okay with Tony’s level of support.  Michael was able to type that Tony was his friend and he asked for some candy from the bowl in the middle of the table. 
The process of assuring Michael could bring and use his iPad to school to communicate was effortless.  None of the IEP members present objected.  Moreover, a representative from one of the adult services encouraged us to see to it that Michael’s staff be trained in helping Michael type to communicate once he became part of an adult program.

My next step is to spend some time at Michael’s current school to give Tony training in how to support Michael to type more effectively. 

Monday, October 18, 2010

“I want to have a full life.”

In January 2010, during one of his first Facilitated Communication typing sessions led by Marilyn Chadwick a speech therapist from Syracuse, New York, Michael typed, “I want people to talk about interesting topics with me.”  Knowing his family had collected hundreds of Thomas the Tank Engine videos and DVD’s for him over the last 20 years because Michael demanded them, I asked Michael whether Thomas the Tank Engine was an interesting topic we should talk about with him.  He typed: “Don’t pay attention to the requirements of my autism.”  At that moment, we knew Michael had insight and reason ability none of us gave him credit for.

To me, one of Michael’s most significant statements lately has been, “I want to have a full life.” 

I recently learned from Michael’s grandmother that his school psychologist diagnosed Michael as mentally retarded at age 5.  The psychologist told Michael’s family that he would need to be institutionalized as an adult.  Now that Michael can reveal his thoughts, feelings, opinions, and desires to us by typing, it’s obvious he has a future outside of an institution.

Now that he types to talk, Michael is minimally aggressive.  He recognizes it’s his anger that gets in the way of his thinking more clearly – albeit with an autistic brain.  Mostly though, Michael can now communicate to us that he’s interested about life. 

Last weekend, he and I went to the movies and his mom made sure he had his iPad with him.  He had asked that I see the latest Thomas the Tank Engine movie. It would have been my first experience with 90 minutes of Thomas on the big screen.

Among the many cool things about the iPad is that I can email my conversation with Michael to myself.  It makes it easy for me to post these blog entries.  I’ve discovered that it helps Michael focus his thoughts if I type my words on the screen, too.  That way, my statement is right there for him to read again if he gets distracted.  I also believe typing my words is respectful to him.  After all, it’s the method he uses to talk with me.

With the iPad in front of him, Michael had the opportunity to make conversation right there when it counted the most.

S: I have an idea.  Since you already saw Thomas and Friends, do you want to see the Owl Movie (Legends of the Guardians)?
M: yes
S: that means you have chosen something new and different and that's the way to have a fuller life.
M: Thomas means I want Thomas because it's what I am used to.

Michael bought his ticket at the ticket counter and said thanks.
M: owl movie
M: thanks

Michael ordered his movie snack
M: popcorn large soda large have
M: pepsi

S: is this seat okay or do you want to sit somewhere else?
M: I want to sit here
S: is it ok that your soda is on that side so we can talk if we want to?
M: the soda is fine
S: cool
S: I'm having a good time.  are you?
M: I want the movies
S: I just thought of a question.  do you know anything about this owl movie?
M: movies yes
S: what about the owl movie? have you heard anything about it?
M: need
S: need what?
M: movies
S: ok
S: these are the previews. we need to be patient. it will start very soon.
M: I only
S: you only want what?
M: kindness
S: ok

During the movie, I checked in with Michael
S: are you ok?
M: yes
S: do you have to go to the bathroom or can you wait to the end of the movie?
M: I can wait
S: do you like the movie
M: yes

I noticed Michael fidgeting
S: bathroom?
M: yes

We walked to the bathroom and came and saw the rest of the movie.

Michael hasn’t seen a movie with this much intensity before.  Although the characters were animated owls, there was a battle and talk of evil… a concept I thought I’d better discuss with Michael.  So while the credits rolled…

S: there are people who make mistakes and who want to learn to do better and then there are evil people who don't care about anyone but themselves and who want to rule other people.  the evil owl died in the end. what do you think?
M: I think the evil owl was feed.
S: feeding what?
M: feeding his feeling.
S: I agree. too bad he didn't discover he could have a different feeling.
what do you think?
M: I want to me to do better
S: you are doing terrific at expressing yourself. this will help you!

Sunday, October 17, 2010

He can now tell us when he’s ill.

As soon as I sat down next to Michael at his iPad, Michael extended his arm to me to signal he needed to start typing right away.

M: I want say you are please I really really really have about to breathe
S: explain more about you have to breathe.
M: I have breathe my lungs look not the way they should.
S: how should your lungs look?
M: I thought they should be clear
S: have you been sneezing?
M: yes
S: have you been coughing?
M: yes
S: is your throat sore?
M: no
S: do you feel sick?
M: no
S: so do you just have trouble breathing?
M: no
S: you just have a cough?
M: yes
S: are you upset about having a cough?
M: no

We continued with the rest of the session, but we didn’t talk any more about Michael’s “breathing.”  Admittedly, sometimes it feels to me as though I’m playing 20 questions with Michael.  I know now that the worst thing is to get caught up in a string of yes and no questions.  They often don’t reveal much.  I’m still learning how to make statements that require Michael to answer at least with a word or two. 

When I returned for our next session four days later, Michael’s mom greeted me at the door and told me that Michael had a sinus infection.  Grandma decided that she thought Michael was trying to tell us something during our last session, so she took him to the doctor.  Mom was relieved to be able to help Michael because she never would have known about the infection if he hadn’t been able to tell us.

So after 20 years of silence, Michael now has the ability to tell us when he’s not feeling well.  He doesn’t have to suffer with an illness alone.

Tuesday, October 12, 2010

“Autism takes over every part of my life.”

S: Write a sentence about you, Michael:
M:  am the one with autism.
S: Write a sentence about autism:
M: autism is shit. autism is shit
S: In what ways is autism shit?
M: because it takes over.
S: What does it take over? 
M: it takes over my life. it takes over each part of my life.

It’s not easy to describe Michael.  It’s best to meet him in person.  He has a unique way of connecting with people because he can look into your eyes and conveys a feeling that he acknowledges who you are -so much for the assumption that all people with autism lack the ability to make eye contact.  Each time he types to talk, his sentences reveal more ways we’ve judged him wrongly based on his diagnosis of autism.  

Because he hasn’t spoken in all of his 20 years, people have people assumed he couldn’t think either.  The truth is I made the same leap until Michael began typing to talk.  He surprised me with his ability to think, but more so with his astute capability to reason.  One of the first statements Michael typed when we asked him what he needed from us was: “I want people to talk to me like I’m smart.”

Something shifted in me as I got better at supporting him to hit the correct letter on his keyboard.  No, Michael cannot type without my support yet, but I’ve met other adults with autism who do type on their own.  I had to believe in Michael’s ability to type, read, and spell in order to sincerely take on the task of being his facilitator. 

As I became a better facilitator, it became easier for Michael to be consistent with hitting the keys he wanted to hit.  It’s as if his eye sees the letter – the target - he wants to type, but his brain can’t coordinate his body to hit target.  It has taken the two of us a while to figure out how to “move” together.  I have to let go of all control of anticipating which letter Michael is going to hit next.  At the same time, I have to stay in control of how much pressure I am using to hold Michael’s arm up and steady so he can feel where his arm is in space… relative to the keyboard.  I also have to adjust the force I use to pull his wrist away from the keyboard between each stoke.  I had to learn how to bring Michael’s wrist back to a neutral position so he can count on me to take his wrist back to a starting point between each stroke.  It takes skill to become a facilitator, and I had to be trained.

Michael has the harder job.  Michael has to learn how to counterbalance the tension I give him so he can reach his targeted letter.  This may seem easy, but it is not for someone with an autistic brain which often and unpredictably misfires.  Moreover, the autistic brain has the tendency to operate as if body functions are separate and disconnected from each other.  So Michael has to practice using his autistic brain to coordinate the process of thinking a thought, putting the thought into words, and then moving the muscles in his arm to aim for hitting one letter at a time to spell his words. 

As someone who doesn’t speak, Michael hasn’t discovered how to coordinate his thoughts with the muscles in his voice box.  For now, we can support him to discover how to coordinate the muscles of his arms with his thinking.   Now that I understand the process more clearly, I can see now why it is true that for some individuals who have been supported to type, these same individuals later start to speak.  What isn’t clear to me is why so many educators of students who do not speak allow their misunderstanding of Facilitated Communication take over their ability to reason ad explore its usefulness for certain students.  

Thursday, October 7, 2010

Facilitated Communication means “freedom.”

I wrote the following statement as a fill-in-the-blank question in order to guide Michael to think of his answer. “The word that comes to my mind when I think of Facilitated Communication is _____.” And Michael typed: “freedom”.  I’ve met other Facilitated Communication (FC) users who learned FC as adolescents or adults, and they told me that before FC, they felt they were in a prison – a prison of silence.

Michael wants to take his iPad to school and have his teacher’s assistant facilitate for him while he types to talk.  Michael has typed that he wants to be treated like he’s smart… not like he’s useless.  Unfortunately, the school system does not support FC as a resource to help a non-speaking individual communicate even if there’s evidence that it’s working for a particular student.

I’ll admit, before Michael was given the opportunity to type using FC, I assumed Michael had minimal intellect.  He was in his late teens, and like all people with autism, surely he had to be trained to accomplish things his brain couldn’t comprehend on its own.  Obviously, he would forever need people around him to perform behavioral strategies to make him act “more appropriately.”  After all, he could become extremely aggressive and destroyed property in his home and at school.  I have been educated and trained in the same behavioral theories as school personnel have been taught across the country.  Michael looked like what I was trained to see.

Now Michael behaves differently than I would have ever expected.  When Michael is ready to type to talk, he sits at his iPad and puts out his arm to indicate he’d like a facilitator to support him.  The facilitator holds up Michael’s elbow and forearm and “moves with” Michael towards the letters Michael has chosen to type with his index finger. 

I explained to Michael that he and I would need to practice together more, and that he would also need to continue to let his Grandmother, mother, and our home care staff support him to type.  Michael will have to go to his IEP (Individualized Education Plan) meeting and show the people in charge of how his day is spent at school, that he can communicate his own thoughts and needs by typing. 

We haven’t gone to his school meeting yet, but I told him there was a chance the staff wouldn’t believe he was typing his own words.  That day, he was quick to respond.  He typed, “Of course they will believe me.”

I hope so.  Michael has been silent for 20 years.  He wants his freedom.

Monday, October 4, 2010

“I hate that I cannot talk.”

I wrote the question, “What do you hate most about having autism?” and Michael copied the question by typing with his index finger.  Continuing with his answer, he typed, “I hate that I cannot talk.”

Michael is 20 years old.  Although he doesn’t speak, he has developed ways to communicate what he needs –things like DVD’s and episodes of “Thomas the Tank Engine” on YouTube . He also points to pictures of places he wants to go and foods he wants to eat.  For Michael, this has been a very limited communication system; but he was sharp enough to come up with other ways to get his messages across.  He would attack our home care staff assigned to him, and he chased after then repeatedly hit his mom if she couldn’t get the computer to restart – or if the electricity went off in a storm. 

I learned that Michael could use his Alphasmart (a portable keyboard with a screen) to type out title of episodes listed on YouTube.  He’d type the title without any help, and then he’d take the Alphasmart to his mom to show her which episode to download.  If she couldn’t get the download to work, Michael went out of control.  He punched holes in his bedroom walls, slapped the flat TV screen in the living room, and worse, threw his computer monitor across the floor.  He went through a lot of computer monitors. 

In June 2009, I learned something else about Michael’s typing abilities when I mentioned to his family that I was attending Syracuse University’s Facilitated Communication Summer Conference.  When Michael was 8 years old, some of the teacher’s assistants in his classroom were giving Michael physical support to hold his arm up longer so he could type sentences. 

The school questioned Michael’s ability to type so they hired a Speech Therapist from Rutgers University to assess Michael’s skill.  That Speech Therapist concluded that the teacher’s assistants were moving Michael’s arm for him and typing their words, not Michael’s.  The school stopped allowing the staff to support Michael while he typed.  So for 11 years, Michael was left without his voice – a voice that likely could have been developed much further.  No wonder Michael’s been so angry. 

We don’t know what is in store for Michael, but now at 20 years old Michael is again an FC User. By giving him physical support while he types, he now expresses his thoughts, feelings, opinions, and desires.  He is holding conversations with me, his mom, and his grandmother.  Little by little he is showing us he has a lot to say and that he’s eager to practice his typing skills.  He has an iPad now, and he relies on it to communicate.  Recently he typed, “My computer is the best thing I have.”  There are days he practically runs to it when I ask him, “Are you ready to type to talk?”