Lego Words

Legos

By Philip

i play with

lots of words

like legos.

i am a collector.

i find words

everywhere.

(dedicated to TS)

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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

ICI Conference

The Institute on Communication and Inclusion (ICI) at Syracuse University has a yearly 3-day convention in which individuals using alternative forms of communication such as FC, AAC, or RPM join together with their supports for talks, practical workshops, panel discussions, exhibitions, and meetings.  It is a place where each person is considered intelligent and competent no matter their diagnosis.  It is a safe place where differences are celebrated and stims such as flapping, pacing, or rocking are welcome. Philip and I were treated to talks by Naoki Higashida, a Japanese Autistic young man who wrote the book The Reason I Jump, Autistic advocate and activist Lydia Brown, and Stephen Kuusisto, a blind professor, author, and poet.  We also attended workshops to improve typing and panel discussions on inclusion in school and community.  Along the way, Philip met Autistic friends Oliver, Daniel, Amy, and others.  Philip had this to write about his first time experience at the conference.

This week I went to the ICI Conference.  I had a nice time.  I am glad I went even if I was scared of the crowds.  Each day I learned to accept autism more.  I learned I am not alone.  On day 1 I met Naoki Higashida.  He is learning from his mentors too about acceptance.  I get his feelings tons each day.  He decided to reach out to other nonverbals.  I am going to try myself to reach out as well.  If reaching out is my calling, I am hearing it loudly.  I picture the meaning of life is learning to accept my autism in the world out there.  I want to mean to really notice like-minded wretches (a reference to the movie Wretches and Jabberers in which the non-speaking Autistic typers refer to themselves as the Wretches) to help them communicate.  I learned to meet others like me is important.  I met Oliver and learned I am not the only one who has difficulty typing.  I am daring to improve by next year.  I am weary of beating up myself because of autism.  I want to be free to be autistic and make a life understanding my very good purpose.

         Taking a rest from the typing workshop.

                                          Meeting Oliver and brother Sam

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

Daring

I get a kick out of Philip’s use of words.  A boy of few words, he carefully chooses each one to extract the most meaning out of it.  A week ago I wrote a post here about Philip giving titles to my Dad’s photographs.  As a follow-up, I asked Philip how he came up with the titles.  He spelled, “I ATTRIBUTE A TITLE THAT SUMS A LESSON.”  Yesterday my Dad won a gold award (the highest honor) for his photograph which Philip named “CATCHING LIGHT OPULENCE.”   I asked Philip why he chose the name.  “I LIKE HOW THE LIGHT SHINES TO ACCENT THE BEES AND THE OPENNESS OF THE FLOWER IS EASY TO ENJOY.”  Why opulence, I asked.  He spelled, “VIOLET ROYALTY.”

"Catching Light Opulence"

One word Philip has become particularly fond of using is “daring.”  The meaning of daring is “willing to take or seek out risks; bold and venturesome.”  I’ve been thinking about this word today and how it is related to hope.  Hope is the dream we have, but daring is the action that allows us to realize the dream.  Over the past year, RPM has given Philip a voice, and along with that, freedom to dream.  He wants to go to a regular school and says “I WANT TO LEARN EVERYTHING THERE IS TO LEARN.”  He says he wants to be a mathematician when he grows up.  He wants to learn typing and computer skills.  He also wants to write his story and teach others who cannot speak to communicate through RPM.  Photography has piqued his interest and he wants to try his hand on a camera and accompany my Dad on photo shoots.  

The power to dream is an amazing thing.  It gives us a purpose to live for.  It gives us positive momentum to wake up every day with the expectation we can improve ourselves and the world.   For me, this was not always so.  When Philip was between the ages of 6 and 9, I had such a hopeless feeling about Philip and my life that many times I dreaded the morning knowing each day would be like the last without reason to think things would get any better.  How much harder was it for Philip?  Hope is where all dreams find their beginning.

Daring is each step we take in making our dreams come true.  When a child is autistic and cannot communicate, he has to rely on others to dream big enough for him too or else his own dream cannot be realized.  Daring to see Soma was the best thing we ever did to help Philip.  With no indication that Philip could read, spell, communicate, or even understand much, we went to see if she could teach us how to reach Philip.  And she did!  Philip learned to learn age level academics and answer questions about himself.  When we got home, Philip would not communicate as he did with Soma for months but we dared to persevere until he could.  Little acts of daring such as pushing for a sentence rather than a single word, letting Philip speak on his letterboard to others, or enrolling him in activities with inclusion, snowballed into bigger things.  We didn’t always achieve things on our timing and sometimes a dare was met with a fail, but within the whole process was progress.  Looking back, each breakthrough has been a result of daring a fear or the status quo.

I want Philip to keep daring himself to accomplish his dreams.  This is not easy for him.  Often he feels discouraged about things, whether it is his inability to overcome his own sense of overwhelm during stressful situations or not receiving adequate accommodations to help him communicate out in public.  I keep reminding him that many of his heroes, Frederick Douglass, Abraham Lincoln, and Martin Luther King Jr., did not have it easy.  To achieve their goals, they had to defy odds against them and in doing so, made a huge impact on the world for good.

I look at the growing number of non-speaking Autistics succeeding and living out their dreams as well.  What do they all have in common?  They have all dared the common perceptions of autism.  They have all dared to find ways to communicate that are out of the box.  They all had people to dare to dream alongside them.  Tito Mukhopadhyay and Ido Kedar are accomplished writers and speakers (how amazing is that!) who learned from Soma.  Kedar currently attends mainstream high school.  Naoki Higashida was homeschooled and learned communication via letterboard and typing.  He is an artist and has written bestsellers in Japan and the US (The Reason I Jump).  Carly Fleischmann types and now attends college.  Larry Bissonette and Tracy Thresher travel the world as speakers (by typing) and advocates and have made a fabulous movie called Wretches and Jabberers.  There are many others daring their schools and communities to accept them, working jobs to support themselves, and defying people’s expectations.  

I leave you with Philip’s statement to me this morning after reviewing the post: “I AM DARING TO BE MYSELF IN THE WORLD.”  How about you?  Do you dare?   

 Philip with Soma

Stories That Matter Most

I am looking forward to receiving a new book in the mail soon called The Reason I Jump by Naoki Higashida.  A fascinating excerpt from the book can be read in Parade magazine here.  I first learned of Higashida from the wonderful film Wretches and Jabberers.  You can see the trailer here.  The Reason I Jump was written by a Japanese autistic boy when he was 13.  It has only recently been translated to Engilsh by KA Yoshida and David Mitchell, a husband and wife with an autistic son of their own (Higashida is now in his 20s).  According to early reviews, this book was eloquently and painstakingly written letter by letter on a letterboard, much like the one Philip uses.  (Higashida now types and can even read back verbally what he has written).  The book answers 50 questions about autism such as "why do you jump?" and explodes common views about autism, such as autistics are not interested in people, they do not understand feelings, and they are lost in their own world.  Society has come up with a misguided view of autism largely based on fictional accounts like Rain Man and from the medical establishment (DSM criteria).  It has been hard to get a first-hand account of what autism is like because of the communication problems caused by neurology.  However, in recent years I have started to see non-verbal autistic voices more and more.  The book Ido in Autismland is my favorite to date.  Ido got his start with Soma and has written a collection of essays that deeply resonate with what I believe Philip experiences similarly.  Tito Mukhopadhyay has also written about his life and his perceptions through beautiful poetry.  These autistic voices (who speak through the written language rather than spoken) have shattered my preconceived notions of what autism is. 

Of course now I have my own son to tell me what autism is like.  Philip is only 10 and has been communicating just a short time, so he is not yet as eloquent as Ido, Tito, or Naoki.  But even so, he has been amazing me with his story.  The more I discover who Philip is, the more I realize how wrong my perceptions of him were in the past.

Philip actually wants to talk about autism.  A couple days ago, I was ready to teach Philip a lesson from Brain Pop.  I asked him what animal he would like to learn about.  Instead of choosing, Philip became upset and started to cry and hit his head.  I didn’t know why.  After awhile he calmed down and I asked, “Why were you upset?”  He answered, “I KEEP SAYING I NEED TO TALK ABOUT MY AUTISM.”

So we started the conversation, which also lead me to the idea of having Philip co-blog with me. 

 

Lisa (me): What do you want to talk about?

P: STIMS

L: What can you tell me about stims?

P: A LOT OF STIMS ARE NEEDED TO CONTROL THE AKING (aching).  OFTEN I AM NEEDING STRESS RELIEF.

L: What kind of stress do you have?

P: STRESS CAUSED BY EVERY SOUND.

L: What else can you tell me about stims?

P: A LOT OF STIMS ARE TIME CONSUMING.  I LIKE TO KILL TIME BY WALKING AND THINKING.

L: What do you think about?

P: I THINK ABOUT ANYTHING

L: What are some things you think about?

P: AS YOU ASK I AM EYEING A HAPPY FUTURE.

L: What do you see in your future?

P: I AM TALKING

L: How?  With your voice?  Typing?

P: WITH A PERSON HELPING

Today I also shed tears about a discovery I made about Philip’s ability to use his hands.  In my dining room I have 2 paintings made by Philip when he was just 2 and a half.  I am so glad my mom saved them because at one time his paintings became so numerous I used to throw them away.  I finally had two of them framed when we moved to Buffalo 4 years ago.  They look like paintings of the sky at different times of the day.  Philip also used to color and could draw a face.  For some reason we saw those skills vanish in time to where to this day he cannot even draw a straight line.

Ana and I talked to Philip and Ana asked, “Do you remember when you used to paint and draw?”  Philip replied, “Y.”  “Why don’t you do that anymore?” Ana asked.

P: AT THE TIME I STILL COULD HOLD A PENCIL.

A: What happened?

P: I CAN’T CONTROL EYE AND HAND ANYMORE.

Autism is such a mysterious condition.  I think there is still so much to discover in the future.  Perhaps whole paradigm shifts of viewing it and treating it will come about from all these autistic voices speaking out.  It is a good thing.  Their stories matter most.  Philip reminds me that even though he deals with such hardships, he has his eyes open to a happy future.

 Philip's paintings at 2 and a half years old

 Drawing at age 2