Teaching Teachers

A very encouraging thing happened last week during our RPM-Autism Workshop.  Two special education professors from a local college came with all their students.  They filled our observation room.  It was fantastic!  At the end of the workshop, one of the professors asked the last question of the day, “Parents, what do you want these future teachers to know about your children?”  Parents’ voices popcorned throughout the room.  “Please assume my child is intelligent.  Don’t talk down to him.”  “Try to understand why a kid behaves as he does.  Don’t just treat the behavior.”  “Be open minded about how different kids may learn in different ways.”  “Be patient.  Treat each kid with respect and in a manner you yourself would want to be treated.”

It was a beautiful picture:  parents teaching teachers how to teach their children.  In my experience throughout the years, we parents have often had it backwards.  We expected doctors, teachers, therapists, psychologists, behaviorists, social workers, and everyone else to teach us about our children and about how to teach them.   In some cases we even left the care and instruction of our kids primarily to other people.  I remember vividly going to support groups in the early years and everybody comparing notes about how many hours their child received ABA from various students and providers.  They would talk about all the extra services on top of that:  speech, OT, PT, music therapy, riding therapy, swimming.  They would talk about all the biomedical interventions their child was on.  There was also a lot of anger throughout these meetings about battling the school for more speech or lamenting that certain services were discontinued.  It seemed more was always better.  I always left feeling worse than when I first came.  I felt like I had to compete with other parents to get more therapies for Philip if I were to be a good mother.

RPM is different.  For us it brought back the natural order of family relationships.  Sam and I would be the number one experts in our child and we would be his greatest teachers.  As I became empowered in my ability to parent Philip, I began to see things more clearly.  Filling up Philip’s days running around town to extra speech and OT just wasn’t benefitting him.  The behaviorists who came to my house didn’t really know why Philip behaved the way he did.  They could only guess.  Finally I could ask Philip and he could tell me himself on his letterboard!

As parents we have the opportunity, indeed we have the obligation, to teach our teachers about our children and how to work towards his or her greatest potential.  This is what it truly means to be our child’s advocate.  It is not simply to be his manager.  It is to know our child’s wishes and desires and make them known so people can come alongside them and help them achieve their goals for themselves and for living in the world.  

Yesterday I had two of Philip’s teachers over to demonstrate how we have been working at home.  Philip spelled GEOGRAPHY to select one of two lessons I presented.  I did a mini-lesson on various landforms and Philip answered questions.  Philip also showed some of his typing skills on my laptop by shadowing responses from letterboard to keyboard.  One of his teachers was very impressed with how Philip spelled geography.  “How did he do that?  How did he learn?”  I told her Philip learns a lot by listening.  He can spell phonetically.  When he makes a mistake, I teach him the correct spelling.  Philip can read too.  He told me he could read since age 4.  He learned from books.  His favorite was “Love You Forever.”  I used to read him that story every night.  He also told me the first thing he ever read was “STOP” from the stop sign.  I then showed the teachers how you would start with RPM from choices to spelling.  The teachers were very nice but knew their boundaries of what they were allowed to do at school.  We discussed a happy medium where ABA overlapped RPM.  I was glad to be able to show the teachers first-hand how I worked with Philip.  As they left, I gave each one a copy of the book Ido in Autismland and told them it was the first book I read that really resonated with me as to how Philip experiences the world.  They said they would read it and that they wanted to do all they could to help Philip the best they were able.  The meeting gave me a lot of hope.  After they left, Philip spelled, “I LIKED THAT THEY CAME.”

It is a good feeling to be in the driver’s seat with Philip as the navigator to lead the team who will work on Philip’s behalf.   The fact is Philip will always need teachers, aides, therapists, doctors, social workers, and many other people for him to succeed in life.  Now we can work more effectively because Philip can finally show us the way!  

 Miami Springs River Festival April 2006

Belief

I have been mulling over the concept of faith and belief the past few days.  What lead me to this churning of thought was a brief exchange I had with Soma last week as I was driving us to the church for one of our workshop days.  Soma asked me how one of the families she saw last time was doing.  I told her I didn’t know but that I was worried they may not be doing as well because some of the family still did not believe in her technique.  “That’s ok.  It doesn’t matter,” she said rather casually, “some of my family didn’t believe either.”  Practical as she is, Soma went on to talk about how to build skills, one skill the foundation for the next and so on.  What Soma demonstrated throughout the week through her words and actions was that RPM is successful because you work at it, not because you simply believe.

Why do I bring this up?  Since starting RPM, I have struggled with the idea that some people don’t believe in this method or don’t believe Philip is really the one spelling his words.  I see the looks of skepticism at school meetings or go online and see nasty comments about how RPM is a fraud.  I still wonder at the sharp dichotomy of how my son appears on the outside- aloof, always moving about, and unable to talk or play like normal kids.  Yet when he expresses himself through spelling, his mind is clear, imaginative, and downright brilliant at times.  Can this really be the same kid?  When I sense someone else’s doubt, a seed of doubt gets planted in my own mind and I start wondering, “Am I inadvertently moving the board?  Am I guiding him somehow?”  Each time I think about it, I come up with the same response, “No I am not.”

I started to think that maybe my belief in RPM and my desire that Philip could do it somehow released some mystic energy that allowed Philip to express himself.  I know it sounds freaky, but that’s how I felt at times when I considered the almost magical transformation my son has had in only a year. 

From the brief conversation in the car, Soma reminded me that RPM was completely based in reality.  It is not a magical thing that happens by pure wishful thinking.  It happens because the amount of work and time spent practicing builds real learning and real skills that have been layered one at a time in a logical order.  Since starting RPM I have been diligent every day in working with Philip from the bottom up.   First Philip had to learn to listen to my voice and respond to it by picking from choices.  I had to adjust my speaking to him from speaking to him like a toddler via mostly commands to a more age appropriate conversational style.  Then Philip had to learn to spell answers to material he was just taught.  For example, I might state and ask, “A dog is a kind of M-A-M-M-A-L mammal.  What kind of animal is a dog?”  Philip would spell MAMMAL.   From there, he would learn to reason about factual information, no emotions or personal opinions yet.  For example, I might ask, “What season is Christmas in?”  Knowing that Christmas is a time associated with snow, Philip would answer, “WINTER.”  From there, I would start introducing open ended questions like “What do you want for Christmas?”  At first this was extremely difficult, but in time, after many failed attempts on my part (Soma was able to get him to answer this after one week, and for me it took  4 months before I got an open ended response) he finally got it.  I have only started blogging 8 months after starting RPM.  It may look like Philip just picked up conversing with the snap of my fingers, but in actuality, it took lots of practice, along with blood, sweat, and tears to get to where he is now.  Soma mentioned that we should always be on the edge of the next thing.  We should never get complacent about where we are, but keep learning every day and improve in the areas of cognition, communication, skill, and tolerance (how long he can do the work, which settings, and with who).  Philip is beginning to do opinion writings, typing, and working with other people like his Dad, Sunday school helpers, and teachers at school.

I used to wonder what Jesus meant when He said, “Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”  It seemed paradoxical.  Your faith only had to be as small as the smallest known seed, yet it could move a mountain?  This couldn’t possibly be a mystical conjuring up of something.  If it was, I would guess Jesus would say you have to have faith as large as a cloud or something like that.

So what does this mean and why am I bringing it up in the context of RPM?  First, I believe the object of our faith must be based in reality.  The faith part comes in because part of it is a mystery hidden from our eyes so it can’t be easily quantified or studied through the scientific method.  But it is no less a real thing.  If you are my age (I’ll just say I’m a little below 40), you probably remember watching the Peanuts Halloween special about the Great Pumpkin.  Linus’s strong and sincere belief in the Great Pumpkin did not make it real.  His belief was not based in reality.  A faith in the wrong object will not move anything, let alone mountains.  In the same way, my pure belief in RPM was not what caused RPM to work for Philip in some magical way.  Rather, RPM is a method that really works based on how it utilizes pathways in the brain.  My faith came in when I decided to try if this method really works.

When Soma told me it was ok if others did not believe in her technique, it was like a big weight lifted off my shoulders.  I thought that if people didn’t believe, Philip would be hindered. It's not quite true.  Someone should believe to get it started, but so what if not everyone believes?  I think of athletes that go out to prove their critics wrong.  It is a source of motivation, not hindrance. The Bible says you only need faith as small as a mustard seed to move a mountain.  I had that faith.  That faith is what started me and got us to fly to Austin for the first time to see Soma.  From that tiny seed grew roots as I saw Soma working with Philip.  Then a stem burst forth through the hard ground as we continued to work tirelessly even though at times we both wanted to quit.  As momentum was gained, branches grew forth as Philip began to tell of his inmost thoughts, communicate with others, and try new skills.  Meanwhile his trunk of knowledge and skill grew wider to support new growth.  In time the tree produced new seeds of faith to be planted to grow more trees like Philip.  Last week, 5 new seeds were planted (2 existing tress were reinforced).  These new seeds will need lots of nurturing to take root and grow.  I will be doing my best to do my part in helping each one succeed.  Indeed I can foresee a future where a mountain of misunderstanding will be moved and children like Philip will be liberated.   

     

RPM-Autism Workshop- Part 2

Today I had an amazing talk with Philip about his own impressions of the RPM-Autism Workshop this past week.  His perceptions fill me with awe and wonder.

Lisa (Me): I think it is really important to stop and reflect on things that have made a big impact on our lives like this past week when Soma came.  It was amazing that she got to help a lot of kids and their families.  What were your impressions of the autism workshop?

Philip:  I AM THANKFUL TO SOMA FOR ALL SHE HAS DONE.  IT IS THE MOST IMPORTANT THING THAT HAS HAPPENED TO ME.  SHE IS SAYING WE CAN DO TONS OF UNDERSTANDING AND TONS OF SEEING THINGS OPEN MINDED.  

L:  Do you have anything else you want to say?

P:  ENTER OUR MINDS NOW.  EXAMINE YOUR EXPECTATIONS AND YOU WILL REST. 

 

L:  What do you mean by “enter our minds now”?

P:  DO NOT LISTEN TO EXPERTS.

L:  You mean we should learn about autism from autistic people?

P:  Y (for yes)

L:  What do you mean by saying “examine your expectations and you will rest?”

P:  I MEAN TO EXAMINE HIS MAIN LENT.

L:  What’s a main lent?

P:  A TIME TO WAIT ON GOD.

L:  Anything else you want to say?

P:  TO UNDERSTAND A LOT YOU HAVE TO DEVELOP THE QUIET NATURE OF KIDS.

L:  All kids?

P:  AUTISTIC KIDS

L:  How so?

P:  EDUCATE YOURSELVES.  ENTER IN SILENCE.

Philip has given me a lot to think about.  In his silence he has obviously pondered a great deal about God, his life, and the world.  Even Philip’s use of words shows a very careful selection and play on words such as his riddle a few weeks back about Lot being “an entertainer” in the Bible.  The riddle stumped everyone until he explained that Lot entertained angels.  Philip’s use of the word Lent now conjures up the season of waiting and fasting before Easter when life is resurrected new.  For all of the kids who came to the workshop this past week, their lives were resurrected.  During one of Soma’s tea breaks where she would field questions, one woman asked at what age should kids start RPM.  Soma answered that she did not typically take students in her clinic until they were at least 7, though you could start RPM anytime.  She explained that most parents are not serious until kids are older because they prioritize other traditional therapies before RPM when kids are younger.  The students she gets often come to her as a “last resort.”  They are the ones who do not respond to traditional ABA, speech, and biomedical treatments.  They are often the lowest functioning children who cannot communicate by speech.  Soma takes all students no matter how aggressive or old they are.  In fact her heart is most drawn to the forgotten adults who often are institutionalized.  She has started a program for adult autistics in the New York City area.  

This week the 7 kids who came to Soma’s workshop were essentially all non-verbal and were previously seen by most people as having the intellect of someone at a preschool level.  Their ages ranged from 9-27.  Some had other issues on top of autism, such as Down’s Syndrome.  All would have been considered “low-functioning” on the spectrum.  They were in effect seeing Soma because nothing else worked.  

During the 3 days, the lives of these kids, as well as their families, were resurrected after many long years of waiting and fleeting hope.  We found out these kids could be spoken to like regular kids.  They could learn and respond to a lesson fit for their age.  They are funny, creative, smart, and have real concerns and emotions.  We found out Kaylie could tell funny stories because she “WANTS TO MAKE YOU SMILE.”   Sawyer, a teenager, wants to wear white stripes for Christmas.  He is also scared of growing up.  Elijah wants to get his mother a watch for Christmas.  Jeffrey could spell anything and even speak the letters clearly as he points.  He wants to travel to Argentina someday.  

Their parents, often with tears in their eyes, would say they never knew what was in their child.  They saw their children in a whole new light for the first time.  One said it was like giving birth to her child all over again.

Later in the day I had this conversation with Philip.

L:  Philip, what is your impression of Soma?

P:  SHE IS REALLY SMART- TIED WITH ME.  ( I’m thinking this kid has some confidence or swagger)

     SHE IS A NICE PERSON.  SHE IS REALLY MADE OF STEEL.

L:  What do you mean by ‘she is made of steel?’

P:  STRONG

L:  Anything else?

P:  SHE SEES ME AS INTERESTING.  SEES ME AS SEEING THE THINGS THAT MATTER ABOUT AUTISM.

L:  What do you mean by that?

P:  I AM TOTALLY EDUCATED ABOUT AUTISM AND ENT (ENT stands for Ears, Nose, Throat which is his Dad’s profession.  When I questioned ‘ENT?” he added  “I AM JOKING.”).  I AM INTERESTED IN WRITING ABOUT MY LIFE STORY.

 After dinner at Linguini's- wish Philip would have been smiling!

   

RPM- Autism Workshop-Part 1

It has been an emotional, surprising, exhausting, attitude-changing, awe-inspiring, and ultimately joyous past 3 days.  So much has happened, it feels like it was much longer.  I will write more about the workshop in the coming days, but today belongs to Philip.  I will post his writings here.  They need no explanation.

STORY 1- written 10/10/13 (day 2 of workshop)

I am in a rocket ship.  I am going to the moon.  I am going there to find energy rocks.  Energy rocks can run cars, can make electricity, and can make food last for ten years.  The energy rocks were discovered by me.  I discovered them by observing the moon.  I also discovered hidden water in the moon. 


STORY 2- written 10/11/13 (day 3- morning session)

Long ago a boy invented a car that did not need any gasoline.  It went to the moon in one hour.  It took him to Europe in five minutes.  No one wanted to drive other cars.  It was his car they wanted.  He invented floating homes.  His floating homes were so good that no one wanted to buy property. 


CONVERSATION WITH SOMA- 10/11/13 (day 3- afternoon session)

SOMA:  Would you like to talk about life science or physical science?
PHILIP:  WHAT IS STEM CELL?
Soma was not prepared to talk about stem cells, but she did her best to explain what she knew about its biology and also how some people travel to places like Panama to get stem cells because it is not available in the United States.  Philip answered some factual questions about the stem cell lesson.  Then he asked,
PHILIP:  IS IT SOMETHING DAD CAN DO?
SAM (Philip's Dad): No I can't do that.
Soma agrees saying it is illegal here and you'd have to go to Panama.
PHILIP:  SO IT IS NOT A CURE?
SOMA:  No, but there's still a lot of research to be done (* I'll have to go back to my video to get the exact wording of Soma's response but it was something to that effect)


THANKSGIVING LETTER TO FAMILY- 10/11/13 (day 3- afternoon)

Dear Family,
I may run around but I am listening.
I may get tired of sitting but I am going to be back.
I wish to thank you for understanding me.

Re-watching A Mother's Courage: Talking Back to Autism

My in-laws are in town from Albuquerque.  They haven’t seen Philip since last Christmas when we were still getting used to communicating with Philip with a letterboard.  At that time I was unable to get Philip to do any spelling in front of anyone else.  We still needed our enclosed space with no distractions.  It was neat to see my in laws’ reactions to Philip communicating.  I can hardly believe it has been just 8 months, yet his achievements between then and now seem to be years in between.

Yesterday I rewatched the movie A Mother's Courage: Talking Back to Autism with my in-laws so they could see Soma at work and how she has changed so many kids’ lives by giving them the tools for communication.  If you have never seen it, I strongly suggest you watch it!  I borrowed it from my local library.  The film is a documentary from Iceland which has been adapted to English speaking audiences with Kate Winslet’s narration.  It is the most balanced autism documentary I have seen.  Margret Dagmar Ericsdottir, the mother at the center of the film, is the mother of then 11-year old Keli who is non-verbal.  She traveled across the United States and England interviewing autistic people, academics, experts, and families to gain a better understanding behind the mysteries of autism and its treatments.   The whole autism spectrum is well represented: Aspergers, “high-functioning autism”, PDD-NOS, regressive autism, and non-verbal autism.    

I read in an interview of Ericsdottir that when she was making the documentary, she wanted to present an objective view of the wide range of autism and its therapies.  She never expected it to lead to a personal breakthrough for her and her son.  The breakthrough came when she met Soma Mukhopadhyay at her HALO clinic in Austin, TX.  Here we learn how Soma found a way to reach her own son Tito and then transfer her techniques to America to work with many other children with autism.  We see Soma work with kids one on one as well as in groups of 3 and 4 kids conversing with their letterboards.  Some of the kids were pretty funny!  All are much smarter than anyone would initially give them credit.  One child Mitch is so good at managing stock portfolios he has come in fourth place in a national competition.  He and his family can see a real future for him as a market analyst as it is an ability he can use despite not being able to talk.  Finally we see Keli’s remarkable breakthrough.  I will not ruin the ending for you.  It was very moving. 

Watching the movie again filled me with happiness and hope.  Happiness because there are so many out there like Philip who communicate as he does.  Hope because many more out there could be given the chance to communicate too.  Philip is not unique in being able to learn this technique, but it will take courage to start a movement in this direction (I never understood the title of the movie before, but now I am getting it!).  “Why courage?” you may ask.  Parents have to be willing to change everything they ever thought about their son or daughter.  Where they once thought their child was incapable, delayed, and without hope, they must now believe they are capable, intellectually age-appropriate, and have unlimited potential.  Where once a parent thought they could rely on the expertise of others, they must now carefully examine every advice given (and at times even reject the accepted norms) and take on much of the educating and training of their child themselves.  Where once it was convenient to isolate a child, it is now a responsibility to get the child out in the world as much as possible.  Where once we viewed autism from our own perspective as a parent, we must now take a backseat and allow our child to teach us about autism.

I am grateful for what this film has started in our own family and for the movement it will continue in the world.   The Golden Hat Foundation was established by Eriksdottir and Kate Winslet after the movie’s release.  It is “dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable. The mission of the Golden Hat Foundation is the establishment of innovative campuses that offer people with autism the opportunity to learn to communicate, receive an education, job training and enjoy recreational activities, all within a supportive social network. When given a suitable education and the means to communicate effectively, people with autism can truly realize their dreams.”

I am doing my part in Buffalo to educate as many families about communication through Soma’s technique RPM by organizing local workshops conducted by Soma herself every 6-7 months.  She will work directly with autistic individuals and their families.  We will also have a day the public is invited to watch her work with children via a live video feed and attend a lecture.  The next time Soma is coming to Buffalo is this October 9-11.  Please let me know if you are interested in coming.  (Yes, this is an advertisement within my blog.  Clever-huh?)         

   

 With Soma at HALO in Austin, TX October 2012