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 

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.

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.”

Letter to the President

Dear Mr. President,

My name is Philip.  I am writing to tell you that I am autistic and I want to change the way autistics are taught.  Time to listen to autistics.  No stopping us now.  Standard of teaching has to change.  There is too much senseless drills.  There are not interesting subjects fostered.  Sometimes I want to learn with normal kids.  I miss autistic classmates who don’t talk.  They can’t be at my school because they can’t communicate.  I need lots of support to spell thoughts.  Not having a voice is hard.  It is hard to be the only non-speaker in my class.  Not talking is geared to nothing.  Not having a chance to learn is cruel.  Please govern fairly.  We need you to protect our right to happiness too.  

I am really lucky to have learned from Soma.  I mean to help other autistics to learn RPM too.  To start RPM you learn to listen to normal lessons.  You learn to spell answers.  Then you learn to notably spell your thoughts.  I lower myself to help others.  Learning is so important for our success.  

                                                                                                           Yours truly,

                                                                                                           Philip Reyes

Lisa’s addendum:

The morning this letter was written, Philip spelled this request:  Will you look at understanding right gears for reaching out to president for registering RPM as academic model for autistics?

Philip has been able to make a breakthrough into full communication by Rapid Prompting Method (RPM) which he learned from its creator Soma Mukhopadhyay at her HALO Clinic in Austin, Texas.  Prior to RPM, Philip received an education based on Applied Behavioral Analysis (ABA) from ages 2-10.  At an early age he  was able to learn the building blocks of learning through ABA, but was only able to functionally make simple requests.  By age 4 he had maxed his capacity to progress in ABA and was stuck learning the same things such as letter and coin recognition year after year.   Philip has expressed his mind was intact all along and he has been soaking up knowledge like a sponge.  However, his inability to speak and to control his body well, made him appear as if he knew very little.  As Philip grew older, this only became more frustrating and lead to more difficult behaviors.  

As Philip  mentioned, RPM is a technique that begins with a regular education and presumes the person is intelligent and competent.  As the person becomes proficient in showing what he or she knows by choosing answers from choices, spelling is introduced, and eventually full communication emerges.  Philip now communicates on a letterboard and ipad (emerging).  He has been able to enter the local public middle school where he attends classes with both autistic (speaking) peers and typical students.  Philip is proud of his accomplishments but is not satisfied with being the only one to benefit.  He thinks often of the classmates he left behind at his old school and those around the world who have no effective means to communicate yet.  He has made it his cause to advocate for them so that they may experience the same benefits he has been so fortunate to receive.    

          Letter to President Part 1

Part 2

Part 3

Part 4 

Words

Today my oldest daughter Ana hung out with Philip while I took my son Carlos to the dentist.  She is into music and was teaching him about music intervals and other music theory.  She would play two notes in succession on the piano and ask Philip to hum it to repeat it and then indicate on the letterboard the number interval.  She said he got everyone right just by listening.  She also said he could name songs that began with a certain interval.  She then read him an essay she wrote about music being a form of communication and about how ideas can be conveyed in different ways.  She mentioned how when she went to Haiti on a youth group missions trip, she learned that their language had only one word for feeling bad but the English language has many words for different kinds of feeling bad: upset, stressed, self-conscious, annoyed, bothered- to name some.  She mentioned that the Haitian culture, compared to ours, is more stoic and survival oriented.  She wondered if it was in some ways related to their language.  Ana wanted to ask Philip if words were the best way of conveying meaning, especially for someone such as he who cannot speak.  I wondered too.  Temple Grandin has said she thinks in pictures.  Many communication systems for autistic people revolve around this idea.  They rely on a person manipulating or pointing to a picture such as an object or an emoticon to express themselves.  I found that when Philip used this picture system, his communication was limited to requests.  He did not use this to share his point of view.  Some autistic people have said they do not put as much importance in words but rather think with their senses or in another experiential manner.  This is another intriguing thought.  Some of the play and relationship development therapies we tried emphasized reading each other's body language, expression, and behaviors.  Indeed this is a part of everyone's total communication.  Was it held to higher importance in Philip's mind?

I asked Philip what he thought about Ana's essay and the means we have to think and communicate.  Philip responded on his letterboard:

I think in words all the time.  I kind of get it that it is hard to think meaningfully without words.  Miss intention without words.  Dare to communicate without words.  You restrict some sorts of roles of communicating.  You cannot express thoughts and feelings well without words.  One day welcome some people who don't use words.  It is really hard for them.  No one, when they don't speak, likes not speaking.  I like being able to use words to communicate.  The end story is there are many ways to communicate but none are better than words.

I asked Philip, "When you were younger and couldn't communicate on your letterboard and people didn't know how smart you were, did you think in words?"

Philip: I was always thinking in words.

"Did you ever think in pictures like Temple Grandin?"

P: No I never thought in pictures.

"Do you ever think in music?"

P: Yes.  I write songs in my head, notably reaching out to God.  

"Do you write the lyrics, tune, or both?"

P: I write both lyrics and tune.

Words.  They are powerful.  To reiterate what Philip wrote, "The end story is there are many ways to communicate but none are better than words."

       Philip, around age 3, and Dad reading

I Know Why the Caged Bird Sings

Today, May 28, 2014, Maya Angelou died.  She was a true renaissance woman in our day.  She described herself as a poet, a lover of the “music of language.”  As I learned more about her, I thought Philip would really admire and appreciate this woman. 

After school, I told Philip about Maya Angelou.  We did a Brain Pop lesson on her life.  Then we read one of her most famous poems.

I Know Why the Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Lisa (Me):  What did you think of this poem?

Philip:  I liked it.  I think it is carefree that the one bird is free to fly and sow its seed somewhere it pleases.  I think the other bird is trapped by the host’s cage.  No God so needs us to enslave one another. 

 

L:  Do you think the poem is about people?

P: Y (for yes)

L:  Who is the free bird?

P:  Someone who gets to live his dreams.

L:  Who is the caged bird?

P:  I think the caged bird is the author Maya Angelou.

L:  What is the cage?

P:  The cage represents oppression by society.

L:  Can you relate to this poem?

P:  I feel like the caged bird.  I kind of feel oppressed by further longing to vear (veer) to some normalcy.  I really want to mean to make a life for myself but I cannot bc (because) I feel limited by being autistic.  I really interested in teaching about the direction autistic research should be going.  Research should go towards teaching communication, not meaningless drills.

L:  What is the cage in your case?

P:  Meaninglessness.  I think bc of misunderstandings of not speaking, autistics are many times sentenced to meaningless lives.  They restlessly mean to free themselves from the torment of silence.  It sometimes makes me so keen to reach out to shake up schools which stand in the way of progress.

L:  Why does the caged bird sing?

P:  He sings for freedom.  Songs for freedom are sang realizing the past was really tormented but there is meaning to our struggles and hope for tomorrow.

L:  What are the things longed for?

P:  Inner peace, to not be mended for autism, education like a normal kid, really good learning how to communicate.

 

Reading and Spelling

Philip has been learning and communicating through the Rapid Prompting Method (RPM) since  October 2012, but the groundwork for his ability to read and spell was laid years before, without anyone but Philip knowing it.

When you see a non-speaking person spelling out his or her thoughts on a letterboard or keyboard, at first it seems a very incongruent sight.  Many of us harbor a preconceived notion that a person who does not speak does not think either.  It is this prejudice that made the term "dumb" synonymous with mute or non-speaking.  It is logical for people to ask, after they witness my son spelling, "How did he learn to read and spell?"

Philip tells me on his letterboard he was 3 or 4 when he learned to read.  When we started to get worried about Philip not speaking, Philip's Lola (Grandmother) bought him a sturdy set of cardboard flash cards with pictures of words from A-Z with the corresponding text of the word.  (As a side note, Philip's ABA flash cards only had pictures without the text.  He did not play with those.). Philip loved his cardboard flash cards and would carry them wherever he went.  He would spend much of his free time lining them up in a beautiful fan formation.  Taking my cue from Philip's love for his flash cards, I made homemade flash cards with each family member, close friend, and teachers' pictures on them with their name printed below.  Philip wrote about his flash cards saying, "I used to line up my flash cards.  To people it was understood as a stim.  I was teaching myself to read.  I played with words in my head.  I very much like reading."

Philip was taught in the ABA way for many years.  He says at first he enjoyed it, but in time he grew bored and resented the repetition and his inability to demonstrate progress in his drills and in his ability to communicate.  He wrote, "At home I studied a lot.  My mom did each lesson (ABA drills from school) too, so much I got mad at learning.  I meant to learn new things, but all I got was hearing the same stories over and over.  I did learn how to read though.  Read Love You Forever and If You Give a Mouse a Cookie.  I learned to role (play) like my mom telling the story.  I would practice reading in my head.  I smiled I could understand words on paper.  Each day I played with those words in my head.  I would see words in my head and arrange them in stories and meanings."

Philip also learned to read from church.  He wrote, "At my church they played videos of worship songs.  I used to match the words on the screen with the words sang.  I learned to read."

Other ways Philip learned to read were from street signs and words on TV.

Today I asked Philip how he learned to spell.  Here is his answer:
"I learned to spell from Soma.  She showed me how to write on the stencils the words I already knew how to read.  I love Soma because she showed me how to communicate.  To decide to write not only saved me from silence, it gave me a purpose: is to teach each autistic how to speak for themselves and to sometimes speak for those who cannot."

 

                      Philip and his flash cards at age 3