Lego Words

Legos

By Philip

i play with

lots of words

like legos.

i am a collector.

i find words

everywhere.

(dedicated to TS)

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LD writes:

Hello, I am a mother of four children. Two of them have autism. My oldest son M is verbal. My younger son J is non verbal. I have just realized that he can communicate to me via writing on a slanted whiteboard. I have to give him pressure on the back of his hand. He has a device to communicate, but he kept wiping out his program. When I asked why he doesn't like his device, he shared that it is too limited! It's tough to say things with. After communicating to him via writing I could see that the content of his sentences were much more complex than what was on his device. We are planning on going to Syracuse University to have J assessed in March. My other son M was actually writing in cursive when I did this same approach with him. I always believed that both boys were smart, but the things they are communicating are quite something! Could you explain some of this to me?

To LD, 
I am happy you are going to Syracuse.  People there are pulling for you to succeed. I used to have an ordeal having to put my thoughts in pictures.  Pictures are inadequate to me for expressing myself.  Tons more meanings can be formed with letters.  I play with letters in my mind all the time.  They are the building blocks of words.  Words build ideas and stories.  Stories make people's lives.  I am coming to spelling out of desperation to be quiet no more. 

From, 

Philip

Lisa's note: I noticed at an early age that Philip could recognize his letters well and liked to play with flashcards with the words on them as well as alphabet puzzles and foam letters.  Looking back I can see why he has had the ability to self-teach himself to read, but at the time I had no idea.  I always thought he was a thinker in pictures, as people told me it was the way most Autistic people thought.  Philip has since told me he does not think in pictures, but in words.  Throughout the years, Philip has tried PECS, GoTalk, and Alt-Chat.  They all seemed very promising, but he did not use them for more than simple requests or unless he was rotely taught to navigate it in such a way to answer a question.  I believe these programs have a place for some people, but it was not the right fit for Philip, whose inner language skills were way above and beyond what he could express with it.  I have tried to illustrate the deficiencies of purely picture programs with others by handing Philip's device to them and asking them how they would conduct an IEP (education planning meeting) just using pictures programmed on the device.  It's impossible and very frustrating for the user.  My experience has been that methods using open language through spelling offer the most freeing form of communication and self-expression to those whose speech is absent or unreliable (the words spoken are not the words intended).  I have noticed that many times a parent discovers this on their own, as "necessity is the mother of invention."  In India, Soma Mukhopadhyay would not listen to experts telling her her son could not learn.  Her persistence in making sure her son Tito would be educated and be able to communicate, lead her to develop a system which has proven to work with thousands of other nonverbal and limited-verbal people: Rapid Prompting Method (RPM).  Separately, another mother in Japan discovered how to help her son Naoki Higashida to point to letters on an alphabet grid to communicate.  He later wrote an international best seller using the letter grid, called "The Reason I Jump."  Still before these methods, Rosemary Crossley in Australia, worked in an institution where those with the severest disabilities were basically left to die.  She discovered that applying backward resistance to a person's hand (eventually to be faded to elbow and shoulder), could provide stability and sensory feedback to allow a person to intentionally point to objects and letters to communicate.  Her method came to be known as Facilitated Communication (FC).  Although these methods are different in practice, they all make use of letters and words as building blocks to open communication.  They also begin with the presumption that anyone can learn and  contribute, and has the right to be fully respected and included in society.             

Philip, age 3

Eating Words

This essay was written in response to my questions, "How do you have such a good vocabulary?  How did you learn the meanings of so many words?"  Philip had fun with this one, often smiling and laughing, as he typed this delicious essay onto his iPad.  (spelling of saute was corrected by me as it was originally spelled sote)-Lisa

By Philip

I practice my words with attention to detail. To think of words is to learn the meaning of a delicious thought. I cook up savory phrases to pack in flavor to my ideas. I hunger for scrumptious morsels of vocabulary. I catch fresh words every day. I sauté words heard from conversation, TV, and songs. They get tasty being seasoned with my outstanding imagination and spices from my stored up words.  Pop music satisfies cravings for each kid by having beats to move our bodies’ pent up energy. Words dance in radiant motion when accompanied to music. Beats of music ease my mind.

I know a lot of words. I hear conversations well. I hear the news. I hear TV at home. I savor new words I hear. I chew on them to make sense of them. I love daily eating to possess meaningful words.  Devouring academics and books read to me manages my hunger for words. You eat lots of food to produce energy. I eat words and devour ideas to write my careful essays. I relish telling my thoughts. Many people address the moment ascertaining what is going on around them. I address each each word heard. I dare to make sense of the situation by what i hear. Each time I hear new words, I make sense of it by understanding the motive. I easily pick up new words by amplifying my hearing towards words. It takes effort to block out other sounds like TV and other sounds but it is easier than before. I notice voices best because I mean to be a part of the conversation and the world. I dare to make my voice heard now. I serve up my message with really appetizing words to make sure you come back for more.

Related posts

Words

Reading and Spelling

The Mental Map Part 1: Encoding

Philip and good friend Kaylie making cookies

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

Speech and Language

I am continuing to teach Philip from Soma’s book.  Today I read some more of chapter 6 which addresses a parent’s question, “Sam began to talk when he was younger, but he lost the language he had.  Why?”  I asked Philip what he learned about the reading and what his experience was.  Like the boy in the example, Philip had more speech when he was younger, but has lost some of it over the years.

(Philip’s responses are in bold)

What is the difference between language and speech?

Language is the ability to use words to represent thoughts.  Speech is the ability to talk.

Can you have language without speech?

Yes.  Each day I am using language without speech.

Why do you think you had more speech when you were younger?

When I was younger I could speak better because each day I readily took to learning.  As I got older I took to stims more.  This happened because as I got older always am I tested the same for years.  Each day I no longer liked learning.  Stims were an escape from repetition.  I took to not caring about my life.  One day I dared myself to understand the world as a typical person.  I was not talking but I was listening always.  I had a strong vocabulary from hearing too much.  Now I can use it when I spell.  I am spelling with new people now.  It is tons of fun to talk to people now.  It is important to learn new things each day.  It makes life interesting.  Someday I hope all autistics will have a way to communicate like me.  I also want to teach people about autism.