Wednesday, November 3, 2010

Is Michael typing his words or mine?

When Michael was 8 years old, he typed sentences with his teacher’s aides giving physical support at his wrist.  Whenever Michael typed, his teacher would record it in the communication book that he took home every afternoon.  His mom would read Michael’s words, and sometimes found what he typed to be odd. 

Michael typed that he and his family went to Ollie’s (an overstock store), but they never went there.
Michael typed that he was sad because his dog died, but they didn’t have a dog at the time.

Michael’s school hired a consulting Speech Therapist from Rutgers University to assess Michael’s typing, and recommended that the teacher’s aides stop supporting Michael to type.  Given the Speech Therapist’s recommendation and given what Michael had supposedly typed, it was reasonable for mom to assume the teacher’s aides were doing more then supporting Michael’s wrist.  Maybe they were directing Michael to type their words, not his.

Eleven years later, and a few years after my agency began providing Michael services, I happened to tell Michael’s mom I was visiting Syracuse University to learn more about Facilitated Communication (FC).  She didn’t know the term, but when I told her that someone gives physical support to a nonspeaking person so that they can type to communicate, she was quick to tell me about Michael’s history with typing.

I was curious why Michael would have typed something that wasn’t true.  Maybe there was another way the Speech Therapist could have viewed the situation when Michael was 8 years old.  I learned from Marilyn Chadwick at Syracuse there is another perspective to consider when non-speaking individuals, especially children, type false statements.

It’s not uncommon for young children to make up fantasies, even lies, and talk openly about them to us.  Children who speak are part of a verbal community of people who help them understand what makes up appropriate conversation.  Children who speak slowly learn the difference between a fantasy and a lie, because people around them have lots of opportunities to teach them.  Children, adolescents, and adults who are nonverbal don’t have the luxury of being guided to understand the rules of conversation because speech isn’t their primary way of communicating. 

When a nonverbal individual learns to type to talk, we have to be open to reading/hearing whatever they have to say, just as we do when listening to a person who speaks to us.  When a speaking person talks to us, we listen to what they have to say out of respect.  When a speaking person makes a false statement, we don’t discount whether he/she can speak. At most, we might explore why the person lied.  However, when a non-speaking person types a false statement, we conclude the person’s entire ability to communicate with typing is false.  It’s unfortunate how we put them in the position of having to prove that they really do have a voice.  More then that, they have to prove they are more competent than they appear.

There is always the chance that a well-meaning parent, teacher’s aide, family member, or care-giver will want a nonverbal person to speak so badly that she/he will deliberately or subconsciously guide the person’s wrist to influence what’s being typed.  Because there have been research studies in the 1990’s indicating that nonspeaking individuals were being led to type the words of the facilitators who supported them, educators and other professionals are taught to believe facilitated communication is controversial. 

When educators and professionals assume the research depicts a completely accurate picture of FC, they convey their doubts to parents and others who view it as a possible intervention for the nonverbal individuals in their lives.  Plus, these same educators and professionals may unknowingly be unable to step away from their belief about a particular nonspeaking individual.  They may be too invested in believing that person is not competent enough to type coherent sentences let alone have original thoughts to share.  It is this culture of skepticism that leads a non speaking individual who types to talk with the help of a facilitator to assume the burden of proving the typewritten words came from him/her.
Michael and I have practiced diligently over the last five months to develop the partnership he needed to type effectively.  If researchers had “tested” us during the first three months of our practice sessions, I wouldn’t have been too confident in the outcome.  I’m glad we weren’t tested earlier because the results might have discouraged both of us.  Instead, I have kept showing up for our sessions, and so has Michael.  In fact, as soon as I walk in the door, Michael quickly walks to his room to sit in the chair in front of his iPad.  There are times when he even greets me at the front door smiling.  He knows I believe in him, and he has said as much.  Last week on October 21, 2010, I knew he was ready…

S: I have an idea that will help you and me get even better at typing together. This idea will also show other people that you really are the one typing your words... not me pushing your hand around. What do you think?
M: I want you easy to show that I am typing.

S: Grandmom will write a word on the white board and only show the word to you so I can’t see it. (His grandmother wrote the word and Michael typed it.)
M: slow the word was slow

S: Excellent.  Now Grandmom will write two words (and only show them to Michael).
M:  eat dinner

S: Great.  You did it again.  Now Grandmom will write three words (and only show them to Michael).
M:  mom works hard

Then Grandmom wrote a fill in sentences (and only showed them to Michael).
M:  the house is and the house is you
M:  my favorite movie is Thomas the tank engine
M:  I like to play to on playstation
M:   pop reads the book

S: Now Grandmom will tell you to type a word, but she’ll whisper in your ear so I can’t hear what she wants you to type,
The first word she whispered that Michael typed was
M:  dog

Then Grandmom whispered the word bread, but Michael had trouble processing it what she said.  This makes sense because Michael is better with visual rather than auditory processing.  Grandmom repeated the word and Michael typed it correctly.
M:  pen
Grandmom whispered another word and Michael typed it correctly.
M:  door

S: Michael, I’m going to say a word to you and I’d like you to type it all by yourself without my help.
M:  Michael
M:  Tony
M:  money
M:  luke (his dog’s name… Michael needed help spelling it)
M:  popcorn

S: Excellent! Now type any word you want to without my help.  (There was a long pause so, I rubbed his head and told him to think of a word in his brain and then type the word.  He then typed his word without my help.)
M:  hair

S:  WOW one day soon the words are going to flow out of your brain and your heart without needing much support at all and we'll help you all the way.

S: I want to try one thing.  Can you do a fill in sentence all by yourself?  The fill in sentence was “eat the_____.”

Michael typed the prompt words without my support.
M:  eat the

There was a long pause.

S:  Michael think of a word that you can add to the sentence and then type it all by yourself.
M: hot dog

S: Perfect Michael!  You typed that sentence all by yourself.  We’re going to keep practicing so you’ll need less and less support from me or anyone else to help you.  You're terrific Michael!
 ... ... ...

Back in August, Michael completed another fill in sentence:

M: When I think about typing to talk I wish I could do it do it when I was a little kid.

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