Philip and I have just come home from a 3-day introductory workshop on
Facilitated Communication (FC) at the University of Syracuse Institute of Communication and Inclusion. In some
ways I feel like I have come full circle in my search to help Philip in his
autism. We began in Miami in 2005. I remember reading a book with a checklist of
therapies rated A to D by someone whose word I accepted as truth. At the top was ABA which we got involved in
right away. It was indeed very effective
in the early years, but leveled off in potency about the time Philip turned 4. Regardless, we slugged away at it for 6 more
years based on it’s A rated reputation.
We didn’t know until just recently how Philip felt about it when he was
past preschool age, how he was made to check his mind at the door to repeat
senseless drills year after year and how he was made to feel like a wild animal
trained with edible reinforcers. Throughout
the years we went down the list from A to C.
We tried the DAN Dr. protocol, speech, OT, Floortime, RDI, listening
therapy, and sensory integration. All
provided a little help, but none provided what we really longed for –communication. I wanted so badly to know how Philip felt and
what he thought. What I would do to
spend just one day in his head, I would ponder.
There was the one therapy on the list I thought we would
never try. It had the worst rating of
all, D-. It was facilitated communication. It was described as dangerous, controversial,
and manipulative. I wanted no part in
it.
As the years went by, and therapy after therapy came and
went each contributing a little gain here and there, reality seemed to sink in
that we would never know Philip the way we did our other children. When Philip was 9, I learned of a therapy
that was not even on that checklist I read in 2005. It was Rapid Prompting Method (RPM). This blog has been dedicated to the amazing
journey RPM has given us by finally unlocking the door to communication and
allowing us to hear Philip’s real voice for the first time. It has also opened the world to Philip so
that he could participate in the things we so take for granted- education,
friendship, and a self-directed purposeful life.
Philip has been communicating with his letterboard
effectively for a year and a half now.
His words have gone from single words to pages. But we weren’t finished yet. FC was still left unchecked. I started to become more curious about it. The movie Wretches and Jabberers and the book
The Reason I Jump featured non-speaking autistic typers who practiced FC. Anyone watching the movie could tell each person
was writing their own words and were not puppets of their facilitators. I could not help but be deeply moved and
inspired by them. These men and women
spoke of deep longings, loneliness, being underestimated, and being
misunderstood. They also showed the
bonds of friendship they made with each other, their facilitators, and their
families. Then I met other parents on
the internet through our close knit community of alternative-thinking autism
parents. Christine’s blog Day Sixtyseven caught my attention because her
son Oliver, who is about Philip’s age, was also just emerging in his
communication skills at the same time.
He uses FC to communicate and has become completely independent of
physical support.
So off we went to Syracuse to learn FC with my
mother in tow. Ironically, now that I live in
Buffalo, I am literally just over 2 hours away from THE center of FC training
in America. The training brought people from
all over the country and as far away as Guatemala to learn. On day 1, Philip had his individual
evaluation by Harvey Lavoy and a trainee and speech therapist named Lisa. As I entered the room, I couldn’t help but be
star struck to meet Harvey, who is Tracy Thresher’s facilitator, both featured in
Wretches and Jabberers. During the evaluation
Philip was invited to type on an ipad with Harvey facilitating. They knew he was already a communicator and didn’t
need to start from the basics. Philip
typed, “I’m hoping to type to mom about my intelligence. Teaching you is my job.” This didn’t all come out at once. Philip would intermittently become upset and
Harvey gave him sensory input to calm him such as letting him bounce on a yoga
ball or spinning him in a chair. He
waited patiently until Philip was ready to type more. During the evaluation Tracy even came in and
typed Philip a very encouraging message telling him a little about how he was
at Philip’s age and how he knows how hard it is but that he can do it.
At the end of the evaluation, Philip communicated on his
letterboard. He spelled to Harvey and Lisa,
“I am happy to learn from you.” They
were very impressed with Philip. Harvey
explained to us that FC would not take away from any of Philip’s current
methods of communication. It would
enhance his total arsenal of communication.
FC teaches the skill of supported typing. The support is actually a backwards
resistance provided as a person aims for a letter on the keyboard and then a
resetting of the arm to a neutral position to begin the process again. The rhythm created by the motion also helps
in the process of regulating the person. Support is needed to
help the person with movement disorders, such as autism and cerebral palsy,
overcome errors made by impulsivity, tremor, and inability to locate their
bodies in space. The goal is always
fading support until independence is achieved.
Harvey explained typing would benefit Philip because now that he is producing
longer strands of communication, it is more important to be able to add the appropriate
spaces and punctuation and to self-correct his mistakes. With the letterboard, a lot of the
responsibility still falls to me to make sure I transmit Philip’s message as
accurately as possible. Though I am
careful to make sure I get Philip’s message across correctly by asking him
questions like “did you mean to say that?”
I can see Harvey’s point that typing onto a computer or iPad will really
streamline the process and give Philip more responsibility for his work.
Later that evening I asked Philip his impressions of his day
and the evaluation. Philip has given me
permission to share. This was spelled on
his letterboard:
I am excited about today.
Today I learned FC. I arrived in
Syracuse on a cold day. I went to the
hotel. I roped an open teacher. (Please explain, I asked) Teacher was leader
in keeping open mind to me. I learned to
make my sometimes airant (errant) body obey me by searching resistance to my
impulses. Each day I kind of want to
practice. Daring to leave my letterboard
behind is hard but I am willing to understand it helps me get more
independent. I am teachable. I am sometimes hard to teach bc so into stims
or I am tired from not eating or I am so eloping bc I promise I am reaching out
to dare to respond but am really resistant in my body. I was grabbing Harvey bc I was really
stopping the impulse to kind of wash away learning down the drain. I am tired all the time of spelling my
thoughts. It takes so much concentration. Each day I am stopping myself from
stimming. I stop myself from being too
leading. (What do you mean, I asked). I
am one to get my way by tantrumming. I
each day so much try to accept my autism.
It is so hard to live with. No
matter what I do it is always real hard.
Tracy is really seeing me as smart.
I liked his letter to me. He is
timely in getting to me his two cents.
Is team tired of me? I want to
learn more tomorrow. Someday need to see
people again. One day no one should need
to write to talk. I like to write but it
is hard. One day I hope to talk. The end.
The next couple of days I learned more about FC, its
history, and how to use the technique through guided simulations. I also met a lot of wonderful educators,
parents, and professionals who were some of the most respectful and passionate
people you could meet. The best part was
seeing autistic people themselves talking to us on their devices. One man Jamie, even typed independently with
two hands and could speak back what he had written as he fielded questions from
the audience. He and Jen, a non-speaking
typer, both graduated from Syracuse University and lead productive lives.
What a journey it has been to come full circle like
this. My 2005 checklist is all checked
off. Who would have known back then that
a D- therapy and one that had not even made the list would prove to be the best
of all? Who would have known my wish to
know Philip would come true only then? I
left the FC conference, like I did the first time I met Soma- full of hope and
anticipation.
Lisa, Philip, and Harvey
Me and Tracy
Tracy and Philip
Funny, but I thought the same thing: FC was not something I was going to waste time and energy on because so many "experts" have dismissed it. Now when I read the critiques I realize that many of them have no idea what FC really is! I'm glad you had the chance to go to Syracuse and really look forward to the day when Oliver and Philip can sit down together for a conversation!!
ReplyDeleteWe're planning to be back in July for the big convention. If you're there, we'll make it a point to meet you and Oliver!
DeleteOh, Lisa, I just read this! I'm so happy to know you and Philip will be there! Let's make a plan to get the boys together! It will be so wonderful for them to meet!
ReplyDeleteThis post makes me smile all over, Lisa :) My daughter also had the opportunity to type with Harvey and meet "the fabulous foursome" and it was the thrill of a lifetime. Thank you for sharing your experience! I always say it's good to have options, and important to follow your child's lead.
ReplyDeleteLisa I loved your post. Our son Jacob is an AAC user with supported typing. He is such a gift to our family. He is finding it difficult to be different and would welcome the opportunity to type with other kids who type. You can find him on Facebook and Tumblr. His name is Jacob Bradley. Cheers to you and your wonderful, loving family!
ReplyDeleteCongratulations Lisa and Philip on 100 posts!!!!!! I've enjoyed following your inspiring journey and can't wait to see what God has in store for the next 100!!!!
ReplyDelete