How I Have Learned

Dear Phillip

I have a question for you and your mom please.

When you were young before RPM, how did you learn?

I mean did you learn from your therapy sessions or was it from your mom or was it self learning?

Thanks a lot,

MH

Dear MH, 

I have been learning since I was very young. I look like I can’t learn. I waited to make my intelligence manifest. When I was practicing talking as a young child, I would get mad about not being able to say what I very much wanted to say. I wanted to tell my family I was smart, that I wanted to make conversation, and I love them. I wanted to talk so badly. Instead the wrong words came out.

Learning comes from all around me. In practically every moment learning about the world happens. Learning to make an opinion starts with making observations. All you need are your mind and senses. I make use of all my senses. My most relied-on sense is my hearing. I used to learn to read on my own by matching the words mom read to the words on the page she read. Mom read me lots of books. I learned a lot from mom creating lessons everywhere we went. Probably the biggest way I learned was through songs. I love music. My preschool teachers sang to me to get me to talk. I would feel me learning to rock to the beat and practice seeing the lyrics in my head. At church I learned to read the lyrics of worship songs.

I learned from my therapies somewhat. In ABA (Applied Behavioral Analysis) I learned to make the most of a babyish education by memorizing writings I saw on signs or books in the classroom. ABA taught me to be malleable to get food. Learning was not challenging or fun. I did not need the repetition. Once I learn something, I want to learn something new and interesting. ABA had me repeating the same goals for years.

My favorite therapy before RPM was RDI (Relationship Development Intervention). I liked making my body useful by helping around the house doing chores like laundry, dishes, and lots of other chores. I also liked playing with my family.

RPM is by far the best thing I learned. I am now able to attend regular school. I love it. Meaningful communication allows me to show my intelligence and converse with other people.

Philip

For the Love of Reading

Guest Blog by Chana and Meredith

Chana

From Chana’s mom, Meredith:

I am ashamed to say it, but I had never read a book to my daughter Chana. Well, not since she was a toddler. I gave up reading to her around the age of 3. I just figured she didn’t understand what I was saying and she couldn’t seem to tolerate sitting for a book unless I sang the words.

I am one of those “intense” autism moms. Our non-verbal daughter has received thousands and thousands of hours of therapy... ABA, Floortime, Son-Rise, OT, Speech, PT... you name it... we tried it... And yet, until she turned 14, I had NEVER, EVER -- not even once -- read a “real” book to her.

In the past 20 months, since we started RPM, we have joyously read many NOVELS together. Hundreds and hundreds of pages shared. It is a dream come true, but it took nothing more than my belief that despite a disinterested or even resistant exterior, she really was listening. At first, I followed her around a bit. We built up what Soma calls her “auditory tolerance.”

Now, at the age of 15, Chana can sit intently while I read several chapters in a row, stopping to ask her occasional questions. Less than two years ago, I was sure she couldn’t understand a simple phrase like “The library is open today” and now we go there to pick out books together.

I now know Chana loves non-fiction. Our latest read is “I Am Malala.” We are reading the Young Readers edition since Chana has told me she is not a fan of scary stories or war stories. It is a marvelous book about the bravest of young women. Malala Yousafzai won the Nobel Peace Prize in 2014. So, for this blog, I asked Chana to fill in a sentence.

The assignment was to change “I am Malala” to “I am like Malala because _____”. Chana’s answer:

I AM LIKE MALALA BECAUSE I MAKE DECISIONS IN FACE OF ANXIETY.

Chana has written about her anxiety many times since starting RPM. She is one of the calmest non-verbal autistic people I have ever met, but she says her anxiety is often deep and overwhelming and it is due to her autism. Thank goodness she now has a way to express it. And thank goodness she can now hear the words of courageous souls like Malala, whose stories of bravery can be her friend in the face of the fear she feels.
I hope all parents of non-verbal children will read to them. Read even if your children don’t show their love of it at first. Read to empower your children! It’s a gift all kids deserve. 

A Parent's Question on Reading and Screen Time

Mom N writes:

Hi Philip. I have a 3 yr. old cute autistic daughter. She is doing ABA, PT, ST and OT since one year. She has low muscle tone and hyper mobility. These are medical terms her therapists use. But to me she is a happy, active loving angel daughter. I came across RPM recently and have been following yours, Emma Zurcher Long's and Ido's blogs. How can I start RPM for my little one at home is my question to you. Now a days she keeps on asking (not verbally but grabbing my hand and taking me to either TV or iPad) for cartoons. She was interested in books before. But now she doesn't spend much time with it. How can I reduce her screen time and introduce other activities. Thanks for reading this and eagerly waiting for your answer. Your blog has changed my family and friends a lot. Thanks for being out there for us. God bless you

Philip writes back:

To N, I am happy to answer you. I am pretty sure your daughter wants to listen to you. Keep reading to her. No one really wants to be alone. You can help your daughter reduce screen time by deciding not to let her watch TV. I do not really like TV that much except for watching soccer and basketball. TV makes my ears feel overwhelmed. No one meets so much sound in nature. I like soft volumes better. I prefer people's talk and conversation to TV. I think kids can get addicted to TV out of lack of better things to do. Understanding the world is best through interaction with it. Practice doing things with your daughter instead of watching TV. Putting book reading before TV is better because it deems people look at the story together. I think people eagerly are looking for promises of commitment from people to have someone to share their lives with. I think being available to your daughter is important. Kids at age 3 like being taught about love and mini lessons on God. I feel best when I am peacefully praying with mom or dad. Parents are my closest relationships because they are patient. Mom is devoted to me most.  She never gives up on me even when I am petulant and difficult. I need lots of understanding to do my best in life. Peace to you and your daughter. Philip

Lisa adds:

Hi N, 

The description you give of your daughter sounds so similar to Philip at that age (and somewhat even to this day)!  I think the number one thing you can do is assume your daughter has the intelligence of a neurotypical 3 year old (and perhaps higher) and also that she longs for interpersonal interaction.  It will not seem evident by her outer appearance, but look past it and remind yourself that the outer does not necessarily reflect her thoughts and what is going on inwardly.  When Philip was younger, if he was not still while I was reading, and was instead jumping on the bed or pacing around in the room, I thought he was not listening and I would stop reading.  I now know better that movement does not mean he has stopped hearing.  It may even be helping him engage in the story more.  The times you spend in active engagement with your daughter will be very meaningful for the both of you, as long as you understand that it may not look like a "typical" interaction.  To see what typical 3 year old milestones are, you can search the internet.  Modify these milestones if your daughter can't meet them in the typical fashion (like speaking a number of words).  You can begin simple lessons in what a 3 year old should know in an RPM style starting by giving written choices or word identification.  Beginning to teach literacy skills (thus the importance of reading) will be key to succeeding in RPM.  I think some screen time is ok, but put the subtitles on, so that she can be learning the written words as well.  If you have the opportunity to attend a nearby RPM workshop, I would encourage it.  You can go as an observer (in many cases the observation fee is quite low) or enroll your daughter in the 1:1 sessions, depending on whether the provider accepts kids as young as 3.  You can also search this blog in the pages section to find videos and other resources to help you get started.  I wish you and your daughter all the best!  -Lisa   

Philip around age 3 and his sister

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

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

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