Autism Revolution

I believe the tide is turning in the way we view autism and handle its challenges.  Autistic self-advocates have been leading the way for some time in promoting understanding and acceptance.  Their efforts are slowly but surely starting to catch on with parents and some professionals who have embraced notions of neurodiversity and the presumption of competence.  These parents and professionals have found a new path that is exceedingly more rewarding than the old path merely treating autism as disease and developmental delay.  They have chosen for their children alternative methods of education and communication that respect and work with their child’s unique autistic neurology.

Today Philip typed this to me:  I want to partner with my autistic friends to write a blog about autism.  It should be many voices. 

What a delight this brought my heart!  Philip can speak through his fingers.  He has friends.  He wants to work together with them.  Together with them, he wants to write about autism and teach the world what it is really like!  Haha- isn't this the real Autism Speaks!  Only a few short years ago, I did not think this could be possible!  At the time I had never met a nonverbal child who could communicate beyond simple requests.  Never in my wildest dreams could I have imagined what I know today.  Today I know the truth.  There are hundreds, perhaps thousands of people who were once thought to be severely cognitively impaired and voiceless, who can actually learn, think deeply, and now express themselves on paper, stencils, letterboards, keyboards, tablets, and computers.  The number of people is growing everyday, but many more still need to be reached.  They need dedicated parents, teachers, and supporters to teach them at their true level of understanding and help accommodate their communication as needed.  This communication is not a cure for autism, but the ability to be heard, understood, and affect one's own destiny brings serenity and alleviates some frustration.  Learning to communicate is a process that takes time and requires hard work and perseverance on the part of both the child and support network.  It can be very trying at times!  Thankfully there is an online community of families and allies who support, encourage, help, and celebrate one another in their journeys of unlocking their children’s voices.  There is good camaraderie among members and dialogue is overwhelmingly hopeful and positive.  It is a marvelous thing and nothing short of revolutionary.  

This month this blog will feature the writings of many of these Autistic children and adults who communicate through spelled or typed words.  Many have learned through well replicated techniques such as Rapid Prompting Method (RPM), Facilitated Communication (FC), or various other Augmentative and Alternative Communications systems (AAC).  A few parents even discovered their own particular technique through intuition and ingenuity.  The method does not matter as long as it works.  What matters most is empowering each person and their families through real and effective communication. This month, Autism Acceptance/ Awareness Month, we band together as a community of Autistic people, families, professionals, and allies to express ourselves in a beautiful array of voices, each with its own unique personality and experience.  The goal of this month is not simply awareness so we can tolerate one another.  The goal is acceptance, so that by each person’s inclusion and appreciation, our world is enhanced and each of our lives enriched by the diversity of thoughts and experiences working together.

MY LIFE AS A GIRL WITH AUTISM

I HAVE A VOICE AS LOUD AS A LION’S ROAR.  

IT IS DEEP DOWN IN ME LIKE A BIRD AFRAID TO LEAVE ITS NEST FOR THE FIRST TIME.  

NEITHER TIME OR LUCK WILL WAKE THIS SLEEPING DRAGON, 

BUT MY KNIGHT IN SHINING ARMOR HAS ARRIVED TO RESCUE THIS PRINCESS IN DISTRESS.  

RPM HAS AWAKENED MY VOICE LIKE SLEEPING BEAUTY WAKING FROM HER SLUMBER.  ALL MY WORDS LEAVE MY BRAIN LIKE A WATERFALL FLOWING INTO MY FINGER ONTO THE THICK BLACK STENCIL BOARDS.  

SUDDENLY MY HEART FEELS LIKE A LITTLE KID ON CHRISTMAS.  

MY VOICE IS AS IMPORTANT AS A MEANINGFUL POP SONG THE WORLD FALLS IN LOVE WITH.

THIS IS ME AND THESE ARE MY WORDS LOUDER AND MORE FEROCIOUS THAN EVER.

BY

TIFFANY JOY BROSKOSKIE

Age 13

Kenilworth, NJ

(RPM for 1 year)

Mom Debbie and Tiffany

Lego Words

Legos

By Philip

i play with

lots of words

like legos.

i am a collector.

i find words

everywhere.

(dedicated to TS)

-----------

LD writes:

Hello, I am a mother of four children. Two of them have autism. My oldest son M is verbal. My younger son J is non verbal. I have just realized that he can communicate to me via writing on a slanted whiteboard. I have to give him pressure on the back of his hand. He has a device to communicate, but he kept wiping out his program. When I asked why he doesn't like his device, he shared that it is too limited! It's tough to say things with. After communicating to him via writing I could see that the content of his sentences were much more complex than what was on his device. We are planning on going to Syracuse University to have J assessed in March. My other son M was actually writing in cursive when I did this same approach with him. I always believed that both boys were smart, but the things they are communicating are quite something! Could you explain some of this to me?

To LD, 
I am happy you are going to Syracuse.  People there are pulling for you to succeed. I used to have an ordeal having to put my thoughts in pictures.  Pictures are inadequate to me for expressing myself.  Tons more meanings can be formed with letters.  I play with letters in my mind all the time.  They are the building blocks of words.  Words build ideas and stories.  Stories make people's lives.  I am coming to spelling out of desperation to be quiet no more. 

From, 

Philip

Lisa's note: I noticed at an early age that Philip could recognize his letters well and liked to play with flashcards with the words on them as well as alphabet puzzles and foam letters.  Looking back I can see why he has had the ability to self-teach himself to read, but at the time I had no idea.  I always thought he was a thinker in pictures, as people told me it was the way most Autistic people thought.  Philip has since told me he does not think in pictures, but in words.  Throughout the years, Philip has tried PECS, GoTalk, and Alt-Chat.  They all seemed very promising, but he did not use them for more than simple requests or unless he was rotely taught to navigate it in such a way to answer a question.  I believe these programs have a place for some people, but it was not the right fit for Philip, whose inner language skills were way above and beyond what he could express with it.  I have tried to illustrate the deficiencies of purely picture programs with others by handing Philip's device to them and asking them how they would conduct an IEP (education planning meeting) just using pictures programmed on the device.  It's impossible and very frustrating for the user.  My experience has been that methods using open language through spelling offer the most freeing form of communication and self-expression to those whose speech is absent or unreliable (the words spoken are not the words intended).  I have noticed that many times a parent discovers this on their own, as "necessity is the mother of invention."  In India, Soma Mukhopadhyay would not listen to experts telling her her son could not learn.  Her persistence in making sure her son Tito would be educated and be able to communicate, lead her to develop a system which has proven to work with thousands of other nonverbal and limited-verbal people: Rapid Prompting Method (RPM).  Separately, another mother in Japan discovered how to help her son Naoki Higashida to point to letters on an alphabet grid to communicate.  He later wrote an international best seller using the letter grid, called "The Reason I Jump."  Still before these methods, Rosemary Crossley in Australia, worked in an institution where those with the severest disabilities were basically left to die.  She discovered that applying backward resistance to a person's hand (eventually to be faded to elbow and shoulder), could provide stability and sensory feedback to allow a person to intentionally point to objects and letters to communicate.  Her method came to be known as Facilitated Communication (FC).  Although these methods are different in practice, they all make use of letters and words as building blocks to open communication.  They also begin with the presumption that anyone can learn and  contribute, and has the right to be fully respected and included in society.             

Philip, age 3

Update on Life

Today I noticed it has been awhile since I last blogged and this would be my first entry in May.  After a long winter this year, the sun has finally come out and given us reason to be outdoors more so we have been spending a little less time indoors writing formally.  Today I found myself thinking about what a "normal" life Philip is starting to have.  Of course his life is not normal in the way most people's lives are.  He still needs someone to support his communication all day and keep a close eye on him, but for Philip, this is as close to being part of the normal world as he has ever been.

This evening we went out for ice cream with another family.  Philip was able to order his own ice cream flavor.  He chose mint, a flavor I would have never chosen for him.  It was the first time he ordered ice cream for himself and he loved it.  I had always assumed he liked vanilla.  I wonder how many times he must have thought, "Not again, Mom.  Can't you choose something more exciting?"  My friend T asked Philip how school was going and Philip spelled, GOOD.  Then she asked if there was anything he wanted to say to her.  NOTHING, he spelled like I might imagine any other 11 year old boy respond.  I asked Philip if he had a question for her and he asked her about her job.  We all laughed in good nature about the brief exchange.

Since the weather has warmed, we have been spending more time outside taking walks, jumping on the backyard trampoline, and going to parks and playgrounds.  Philip has resumed hanging out with his friend Nelson more regularly.  He enjoys Nelson's company and though he is not able to talk to Nelson as much as he wants to during the time they meet, he writes him notes in between which I text to his mom.  Philip also has a few pen pals who are autistic and communicate as he does.  I can tell he has a real heart connection with these kids.  They share deep understandings about the world and God that we non-autistics will probably never quite grasp in the same way.    I'm so grateful to see Philip cultivating such real, meaningful friendships.

Another thing Philip has been doing is steadily working on his goals.  For the New Year he came up with his 14 resolutions for 2014 (written here).  He has not forgotten them.  Among the goals he is working on is writing his autobiography.  He uses his letterboard to write a small paragraph every few days.  It has been amazing to discover his point of view in his early years.  It no longer surprises me to find out how different it was than what I assumed.  If anything, I keep learning how faulty my eyes are.

Philip has also been working on typing with support at his forearm.  Philip sees typing as an important skill and having a voice output is an added bonus.  While Philip is quite proficient with his letterboard, being able to churn out sentences and paragraphs with relative ease, typing is a lot more work.  We have used his lesson time as a chance to practice typing his responses in short 1-3 word phrases.  Occasionally he can type a sentence.  As with everything, I continue to push the envelope to see if he can do a little more.

This week Philip typed answers to our Renaissance lesson (here is a portion):
What does Renaissance mean?  rebirth.
Where did it start? italy.
What cultures inspired the Renaissance? greek roman.
When did it start? 1300.
What era was it a reaction to? dark ages.
What happened in the dark ages? no becoming inteligent.
Would you have liked to have lived in the dark ages? no.
During the Renaissance? yes.
Why? talk about  new ideas.
What were some values of the Renaissance?  Knowledge, learning.
How was knowledge from the ancient Greek and Roman times preserved? the monks transcribed a lot of books.
Who were the monks? the help of god.

I then tried stretching him by asking him to type his answer to the question, "What is your motivation to type?"  Philip's answer:  i want to type because kids think u are smart going to do something effective.

One of the biggest achievements Philip has accomplished on his resolutions list is going to public school and being supported in his communication by his teachers.  It has been an up and down transition, but lately more up.  Last Monday, his teacher wrote me a note that Philip was able to identify notes on a staff using his letterboard in music class with typical peers.  He even went to the front of the class with his teacher to fill in a measure with its proper rhythm, notes, and rests.  They say he is getting better with his letterboard and participates in math, ELA, and social group well.  Philip wrote yesterday, I AM LEARNING SO MUCH, BELIEVE ME.  "How does it feel?" I asked.  WONDERFUL was his reply.

Relationships at home are becoming more "normal" too.  Philip and his younger sister Lia have been having their daily communication time with Lia using the letterboard.  This morning Philip remarked, LIA IS GETTING BETTER USING MY LETTERBOARD.  My husband has been reading to Philip daily.  I facilitate conversation with the family.  Philip even jokes around.  Once when his older brother Carlos was being particularly funny, Philip spelled, YOU ARE KILLING ME!  When no one laughed, he spelled, I AM MISSING SOMETHING YOU TALKERS HAVE.  THAT IS TONE OF QUOTE.  We all laughed at that one!

Like in any life, there are its valleys and peaks and everywhere in between.  Right now I am taking in the beauty of an upward climb.

 Baltimore April 2014

FC- Full Circle

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