Monday, July 21, 2014

Change

Today Philip and I discussed how some changes happen in society.  We contrasted revolutions and grassroots movements.  Revolutions are marked by a sudden change in power in which the powers that be are replaced by another power at the top, often by violent means.  The Bolshevik or Communist Revolution which overthrew the last tsar, is an example.  It's leader Vladimir Lenin, a politician of noble background, was moved by Marxist theory, but he himself was not from the labor class of which he claimed to speak for.  In contrast to revolutions, we looked at grassroots movements, an example being the Civil Rights Movement lead by Martin Luther King Jr.  Grassroots movements are distinctly different because they are formed from the bottom up rather than top-down.  Philip summed it up best by writing with his letterboard, "It is daring by the oppressed."  In grassroots movements, ordinary people come together to influence the change they believe in whole-heartedly, without concern of power or position.  Their passion comes from truly wanting to better the lives of others.  

On the topic of change, Philip wrote:

I want to each day so care for each Autistic by establishing RPM as the standard method going to school. Right now the standard is remedial work.  It otherwise is ABA.  ABA is too repetitive and boring.  No demands are made on our intellect, only on our uncooperative bodies.  I escaped this model of education. RPM teaches me something new daily.  RPM is day to day meaningful learning and communication.  I am now in a generation of so-called non-verbals who come to learn RPM to talk with a letterboard.  You should dare to listen to us.  We are not deceitful.  Instead we are really kind and caring.  We are trying to help each other.  You really show care when you dare to meet us where we are learning notable RPM.  

Philip


An outing with Tito Mukhopadhyay during Soma's RPM Workshop in Buffalo.  Many families and professionals were able to learn RPM for their children and clients for the first time.  The kids participating were able to show everyone how smart they are!

                                                            Philip and Tito

Thursday, July 10, 2014

Letter to Autism Daddy

This is written by Philip to Autism Daddy in response to his blogpost, My Son with Severe Autism is Happy.  Isn't that the Most Important Thing?, a 2012 post reposted on the Autism Daddy Facebook Page today.  I have followed Autism Daddy's blog for a few years now because our sons are both the same age and are non-speaking.

To Autism Daddy,
Today my mom read your blog post to me.  You are a good dad to write about your son.  I understand you are frustrated by your son's lack of speech and progress.  Rightly so.  I am telling you tips to make his life better.  Dare to try RPM.  RPM took my mind each day and taught it to think over my stims.  I was trailing behind in my own world.  I am so happy I can day to day improve in talking now.  I cannot use my voice well.  Cannot meet normal expectations.  I feel insecure in my actions.  But I am intelligent and now I can show everyone my thoughts.  Before I could communicate, I was so frustrated with life.  I placed myself in world of my own.  I made my own rules, not caring that people would be pissed off.  I understood everything but couldn't do anything about it.  I liked to kid around with my teachers and act stupid bc (because) they treated me like an infant.  I am telling you your son is a lot smarter than you think.  I understand him bc I am intelligent and non-verbal too.  Not talking does not mean not thinking.  Would you like to be kept silent?  This is not peaceful.  This is killer pain.  I urge you to get understanding of RPM and give your son a voice.
From, 
Philip

(Autism Daddy, please check out my resource page and RPM Provider page.  I believe there is one in your area.  Philip and I would love to see you get help for Kyle to learn and communicate.  We know he can do it!)

Visiting sister's college 7/14.  I like the sign.
 
Video of the first couple sentences of the letter.  We started slow because Philip is beginning typing.  At the 3:30 mark we switch to pure letterboard which goes much faster.  (Video taken by 9 year old sister)






Tuesday, July 8, 2014

Flapping

By Philip

I love to flap my hands.  No one goes through the trouble I have to feel my body.  Dare to feel each moment floating in space.  I carry least weight and each day I go crazy not knowing how my body will act sometimes without my mind's control.  Most people have portly muscle mass to feel their own weight.  I do not.  I like to flap, daring to fly like a bird off a tree.  I flap to mean to fly away to freedom from my body.  Each day instead of carrying weight, I carry air.  It is damning.  It is hard to live so meaningfully.  I cannot do anything most people take for granted like I cannot talk, lip read (when asked to explain, wrote- I cannot make eye contact when people talk to me), I cannot each day very well act normal.  I need to flap so I can feel my placement in space.  If I don't, I place myself in hell.  I have killer fears of feeling weightless.  I feel like I might disappear.  I lie in peace momentarily when I am dealing with pillows of cotton.  I love blankets for this reason too.  I am insensitive to recreational behaviors like learning sports bc I cannot play like everyone else.  I dearly need to exercise.  I barely have strength in my muscles.  I even have no meaningful movement except my finger.  Each day I dearly need a sensory diet.  I have a goal of easing my ability to annoy others.  I am not trying to annoy others but it happens all day long.



Wednesday, July 2, 2014

Thoughts on Thinking, Reading, Writing, and School

By Philip

I think reading is important bc (because) it is how we hear information best.  I read a lot.  I like to read signs and TV.  I have a hard time reading books bc momentarily I cannot very well handle a book.  Books are hard to handle bc they store information too sedentary.   How you read it, you have to sit still.  When I read I either read it at a glance or ten words at a time.  I need to teach myself to not be too keen to tons of words all at once. It undermines the ability to understand. Before spelling I read my thoughts in my mind.  No small task. No one sees the struggle I have to write my thoughts. Ordering intentions in my swollen limited brain is tiring. I sometimes really want to be normal. I store too much information to peruse carefully now. I have to really work to retrieve my decided thoughts from swirling ideas going on under the talked  out thought. Not being able to stim makes it harder to focus on my thought to spell. I can concentrate better when I can stim and move around.  It is hard to stay on task bc I really get distracted easily.  I want to not like me going after my impulses so much.  I want to be in control of myself better.

I want to write about the need for sage wisdom to teach non verbal Autistics.  Methods of tedeous work such as ABA are ineffective in helping interests develop.  I am weak in learning skills for the real world.  One day each Autistic should decide to understand the neurotypical world.  I think going to school to learn to practice going out into the real world is so important.  We Autistics are not able to understand normal social rules without exposure to normal situations.  I need to monitor myself better.  I am sometimes really mean to people by lashing out at them in my anger and rotten anxiety.  I am immature in my emotions.  I kind of do not walk out my feelings.  They pour out instead.  I am beginning to understand myself better about pouring out my feelings better so that I won't hurt anyone.  I am not strong at controlling impulses.  Impulses to form other kinds of reaching out are strong.  No mention of escaping anxieties.  I have a strong desire for acting to obtain objects that kind of get my attention like leaves and strings.  I am active bc I learn best when I am allowed to move.  Day to day I am peaceful when I finish my writing about life.  Hearing my thoughts come out makes me mirthfully eager to stay in this world and not in Autismland.

 At Big Sis's high school graduation June 29, 2014

Wednesday, June 25, 2014

Philip's IEP

This past Monday Philip had his annual IEP meeting, his first at his new school.  For those of you not yet initiated into the world of special education, IEP stands for Individualized Education Program.  For the first time, Philip made his own educational desires heard.  This is what he spelled on his letterboard to indicate his goals:

I want to open my time to some science in regular class.  Dare to wax (increase, get better at) talking with typical kids.  Read books for my age.  I want to read on my own.  Type a lot more.  Right my behavior.  Meet better lessons in remaining subjects.  

A week before Philip's official IEP meeting, I got together with his teachers and presented Philip's goals to them.  We discussed Philip's progress, strengths, and challenges.  What was really neat was that Philip's teachers came up with a plan that incorporated all of Philip's goals!  In addition to his specials, next year Philip will be mainstreamed in science.  The remaining classes will be in the autism classroom but will follow the grade level curriculum so that if he is further mainstreamed in subsequent years, he will be on track.  Philip's education will no longer be mostly rote and repetition as it was at his ABA school.  It will challenge his intellect and reasoning.  Even his reading will not be based on how he reads aloud (as he is "non-verbal"- or more accurately non-speaking).  He will be allowed to read silently and then be tested on his comprehension.  Independently manipulating a book is a goal they will also work on.  In math, they will work on using math in practical ways while still hitting grade-level objectives.  In speech, Philip already has student volunteers from general ed to come into his class to converse with him on his letterboard and ipad.  This will continue.  I think Philip's school is really a model for inclusion with gen ed and special ed students mixing on a regular basis.  Philip's teacher said that after reading Philip's letter (click here to read) to his classmates in music, even more kids wanted to volunteer as communication partners in their class.  This past weekend two 7th grade girls who help in class, threw the whole class and their families an end of the year party at their home.  It was a great time!  At the end of the party, Philip thanked and spelled to his hosts about the party, "I LOVED IT."

The way IEPs work is that there are goals set which have measurable criteria with a method and schedule of data collection to determine whether a goal is met.  There are benchmark or intermediate goals along the way.

Philip's annual goals are:
Reading:  After reading/ listening to a 10 sentence passage, Philip will accurately respond to 'wh' questions based on each passage.

Philip will accurately identify the main idea and answer 5 'wh' questions related to a 1-10 sentence passage.

Mathematics:  During real and contrived purchases, Philip will select the correct dollar amount, and use a calculator to find the total paid over two or more consecutive purchases.

Speech/ Language: Philip will generate 3-5 word phrases to share an opinion, make a relevant comment, or reciprocate a question in order to maintain a conversation.

Motor Skills: Using a keyboard, Philip will copy a list of 5 familiar words, given one visual point prompt at the beginning of each word.

I am very excited about Philip's education.  I know he will learn a lot and will enjoy the stimulation of interesting subjects and a productive day.  I hope more schools will move in the direction Philip's school has taken because everyone benefits when each student has access to quality education as well as the chance to participate in a diverse society.


 Philip and his classmates at the End-of-the-Year party 


Friday, June 13, 2014

Lady Liberty

Today's post is dedicated to Tommy in Philly, whose grandmother gave me the idea for today's lesson and post.

Today I taught Philip about the Statue of Liberty and we read Emma Lazarus's famous poem "The New Colossus" which graces the pedestal of the statue.  The poem reads:

The New Colossus
BY EMMA LAZARUS

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

I started off asking Philip some factual questions about the statue: what country was it a gift from (FRANCE), what is it made of (COPPER).  Then we talked about the poem, with some emphasis on trying to understand the meanings of new words from context and then comparing their actual definitions.  It was fun for Philip who loves words. 

I first explained how a colossus is a statue. I asked, "From the sound of that word, what word do you think would describe the kind of statue it is?" BIG.  I told Philip about the original Greek Colossus of Rhodes which was a giant bronze statue considered one of the Seven Wonders of the World and was erected to memorialize Rhodes' victory over Cyprus.  

I asked, "What do you think brazen means?"  SUPERIOR.  We looked up brazen which actually has several meanings, one being 'made of brass' and another being 'marked by contemptuous boldness.'  It made me appreciate the author' s word choice which covered both meanings.  It also made me wonder if the word's origin actually came from that triumphant, bronze statue.  

"What is the new colossus?"  STATUE OF LIBERTY.
"How is the new colossus different from the old?"  SHE ACCEPTS ALL PEOPLE
"How are they similar?" STRONG

"What do you think 'imprisoned lightning' symbolizes?"
I THINK REAL STRENGTH IS FROM EACH MAN REGARDLESS OF STATUS.

"What do you think an exile is?"  EACH PERSON REACHING OUT TO ESCAPE THEIR  'NOT' HOMELAND
"Why do you say 'not' homeland?"
SOME PEOPLE ARE NO LONGER WELCOME IN THEIR LAND.

"What do you think beacon means?"  TO NOT MOURN TODAY.  
"Actually it means something else.  It is a signaling or guiding device like a lighthouse.  So let's try again.  Give me another name for beacon."
GUIDE.  Philip added, "I AM EACH DAY LEARNING NEW WORDS."

"How do you think the immigrants felt after a long journey across the ocean and finally seeing the Statue of Liberty?"  THEY FELT WELCOME AND GLAD.
"How would you feel if you were one of the travelers and you looked at her 'mild eyes.'?"
I WOULD FEEL SOME COMFORT

"What do you think 'Keep ancient lands your storied pomp' means?"
STAY AWAY IF YOU ARE RICH AND PROUD.
"What kind of people is she calling?"
I THINK SHE WELCOMES THE POOR AND HOMELESS.

"What is the Golden door?"
THE ENTRANCE TO AMERICA.
"Why is it a gold door?"
IT IS A RICH AND GREAT COUNTRY.

"What did you think of this poem"
I LIKE IT BC IT IS ABOUT THE OPPORTUNITY EVERYONE HAS IN AMERICA TO NOTABLY ACCOMPLISH THEIR DREAMS.

Under Lady Liberty's Torch
By Philip Reyes

I see a lady strong and free.
She means peace between France and us.
Pillar of tomorrow's dreams,
She lights the path of foreigners' trust.



Thursday, June 5, 2014

Amazing Teachers/ Guest Blogger Lenae Crandall


This past year I have had the privilege to get to know many people like myself who support Autistic individuals in their education and communication using letterboards, iPads, and keyboards.  Most are also parents of Autistic kids, but a handful are not.  They are a select few teachers, speech pathologists, and aides who have found great joy, purpose, and fulfillment in helping other people's children find their voices.  What is amazing is that they are equally as passionate as parents, perhaps even more so as they get to make a difference in many lives.  Oftentimes these professionals have faced ridicule and dismissal among their peers because what they do is so contrary to what they were taught and trained to do in their profession.  BUT they continue on because what they do works!  The satisfaction they get from their students' success far outweighs anything else.  You will never find more excited, compassionate, and effective teachers as these!  They are the game changers.  I have faith that someday the rest of their professions will have to catch up with them and we will live in a world where all Autistic people will be heard and will be seen for who they truly are.  

Two of the amazing teachers (and there are more out there!) I want to highlight are Elizabeth Vosseller and Lenae Crandall.  Elizabeth Vosseller is a pediatric speech pathologist and owner/ director of Growing Kids Therapy Center in Herndon Virginia.  She recently included RPM into her practice and is seeing amazing results.  Her love and excitement for "her kids" is palpable as she describes their breakthroughs and progress in her blog at www.growingkidstherapy.wordpress.com.  I will feature her in a future post.

The other amazing teacher is Lenae Crandall.  Lenae Crandall is a certified special education teacher and founder/ director of Hope, Expression, and Education for Individuals with Severe Disabilities (HEED) (click here for link to website) which is based in Utah County.  She left a traditional special education classroom to pursue doing RPM with her students full time and has never looked back.  She has a heart of gold for the kids and families she serves.  Many of her students have blogs which are listed in the Profiles tab and sidebar of my blog.  Without further a due, I would like to introduce Lenae as my first ever guest blogger!

By Lenae Crandall

The Jefferson memorial in Washington DC has a quote: "I have sworn upon the altar of God eternal hostility against every form of tyranny over the mind of man."  One day I was conversing with an educational leader. This leader made the statement to me that I should be focusing on “functional skills” and so math instruction should look like counting while helping the child to brush his/her teeth. I was told that I should focus on teaching my students how to eat with a spoon over academics because parents don’t work on those things with their children. While I agreed that teeth brushing, eating with a spoon and other functional activities are very important, I left that day thinking about this Jefferson quote. I thought, “I will be fired before I ever deprive my students of important skills like reading and access to the world. I will fight against tyranny over my students’ minds”

This quote has defined my teaching career. I believe strongly in the education of ALL individuals. I believe in the capacity of EVERY human to learn and progress.  Being religious I firmly believe all human beings were sent to earth with specific talents, purposes, and with a divine nature and worth. I believe that NO person was sent to fail or simply exist. 

Because of these beliefs, my journey as a teacher has been to do what I can to unlock the doors that trap my students inside their bodies. Yes my students can move, but doesn’t mean they can verbally express what they want to say when they want to say it or do things on cue. 

In the beginning of my career I was powered by the belief that all students could learn to read. I believed it to be the gateway to opportunity to learn to read. Reading opened doors to knowledge and communication. This was my first focus. 

As I taught, I found my students were brilliant. I began developing or adapting tests so my students could respond. I saw they had the easiest time simply touching or pointing to an answer. I found my students-whom many thought couldn’t learn to read (and thought I was a bit nuts)- not only could learn how to read, but many were already reading and doing complex skills that they had learned from listening when others didn’t think they were listening, or self-taught in some way.

I realized since they were so intelligent that I needed to find a way for them to be able to communicate all these thoughts and therefore have fulfilling lives. Where would I turn?

One day I was re-reading “The Mind Tree” by Tito Mukhopadhyay. Tito is functionally non-speaking and Autistic. His mother taught him and believed in him until he could write out his thoughts. This was his first book written between the ages of 7 and 11years old. 

As I read I realized that his mother had figured out how to break him free in so many ways, yet he still had the strengths that come with being Autistic! Where was she? I needed to find her! She had the answers I needed. I typed her name, Soma, in online to see if there was anything about her. I would like to meet her, talk to her, pay her to train me how!

I found her at www.halo-soma.org. She has taught over 1,000 children, non-speaking with Autism who many professionals said were severely intellectually disabled.  She teaches students academics so they can access the world and they also learn to communicate. They start by picking choices (learn how to choose and what to choose) and then progress to spelling out answers by pointing to letters on a letter board (laminated piece of paper with letters a-z on it).

I began with my students. I wasn’t great at it at all at first, but  I was so excited to see them point to their first letters to spell words showing they were reading!!!! But, now I had another challenge. Some professionals thought I was already nuts to believe they could learn basic early reading skills. Now I was claiming intelligence at likely normal to gifted levels. I had to keep on going.

Now I have students who are spelling thoughts to me like:
1- “I read. I can communicate. Mom, understands how to help me!”  
2- Student note to parent, “It is just rotten my own room is so small.”   
3- Student note to Dad: “Love you.”
4- Me: What do you want professionals to know about you?
Student: “I know a lot.”
5- Me: What do you want most in life?
Student Spells: “Help lonely people”

They answer questions about all different subjects. They (I) have work to do to fully communicate, but they now can have goals and dreams for their life. One of my students asked if I taught drama. I told him I didn’t, but did he want to learn?  He wants to be a play writ and learn to act. Being a play writ is a realistic possibility. He now can have dreams!

I see hope in many of my student’s eyes, they are happier, they can have fulfilling lives if they are given continued chances to keep progressing and learning beyond “functional skills.”