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. 

“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!

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.

“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.  

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.

“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?”