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?”

11 comments:

  1. Steve,

    Thanks for the post and the blog itself! I personally have seen FC in action and there is no doubt in my mind that this is effective for some non-speaking people. But, can you help me understand why it is controversial if it works?

    LT

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  2. LT,

    Thank you for your question. I've known about FC and it's controversy, and until I met Michael, I had my doubts about it, too. Michael is teaching me how to be a facilitator. More than that, he's given me the opportunity to see the truth about how FC has given him a voice. He surprises with every word. I plan to use this blog to help wrap my brain around the fact that FC works for some people who don't speak (I'm witnessing and experiencing the truth of it). Yet FC is refuted by those who have the power to put it to use as a resource for people who need it. My intention is to read through the published controversies as well as evidence that supports its usefullness while at the same time walk through putting it into practice with actual FC Users. My point is, rather than give you an answer in this single post, let me discover and integrate the answer to your question over time as I post entries on this blog. Hopefully there will be others like you who are interested in following my process of discovery of FC and the amazing individuals who use it.

    Steve

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  3. Steve,

    People may be interested in this clip of Michael that you posted on the New Ground Publishing Facebook page - http://www.facebook.com/home.php#!/video/video.php?v=1565875666868&ref=mf

    LT

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  4. It's also on YouTube on one of my client channels - may be easier to view here:

    http://www.youtube.com/watch?v=rz2dzHx2ayE

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  5. When trying to put myself in Michael’s position, I cannot help but imagine how trapped he might have felt over the years. No wonder he became so upset, when his only means of connection to the world failed. Has there been any change in the frequency of Michael’s emotional outbursts, since he has begun using FC?

    AJ

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  6. This is awesome that Michael once again has a voice that can be heard not only by himself but my everyone around him. It's a shame to have not been heard or listened to in over 11 years. Now he has a second chance and I wish him all the best!!

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  7. Amir,

    There has absolutely been a difference in Michael's emotional outbursts - both in their frequency and intensity. Substantial evidence is that he has not pucnhed a hole in a wall since we began practicing FC. He is now able to talk about his anger by typing out how he feels. I'll be posting another entry soon that describes how he felt anger/upset during one of our typing sessions and he was willing and able to talk about why he was feeling angry. At the end of the session, I asked him how he felt, and he essentially said he felt better because he could talk about what was bothering him. These are the kinds of experiences with Michael that plan to add to this blog.

    Steve

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  8. I cannot even begin to imagine how many thoughts and desires this young man has had buried inside him for years and years. My two-year-old is hitting a phase where he narrates his life to me, just wanting me to affirm what he sees, hears, and experiences. ("Mommy, a FIRE TRUCK!! See it?!") How many times has Michael just wanted someone to know his thoughts? To share his journey? To live what he is living? May he learn more and more of this beautiful freedom, of this ability to relate, as he explores his new-found method of communication!

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  10. (Michael is in the process of learning how to add to this blog.)

    Stephen: What comment do you want to make on the blog?

    Michael: I want you to you to tell them my story.

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  11. Great conversation. Thanks for posting this blog Steve. Our son Marcus is using FC as a beginner and is having successful sessions with his home staff. Looking forward to great things in the future. (Lester)

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