My Paradigm Shift…from traditional speech therapy to RPM

Now that I have introduced you to a few (and there are MORE) limited and non-speaking clients with autism who are using Rapid Prompting Method (RPM) to communicate, I thought it was time to share my story. Perhaps you have some doubts. Perhaps it seems just too incredible that a person with autism, who has never spoken at all, or who has never spoken more than a few words or scripted sentences, is communicating thoughtful, grammatically perfect messages on a letter board. I understand your suspicions. I too was skeptical when I first heard about RPM. Since April is Autism Acceptance Month, I thought it was time to share my journey from flat out doubt to whole hearted belief.

I will honestly admit that when a family I was seeing for speech therapy told me they wanted me to go through RPM training I did, what I hope was only a mental eye roll, as I thought to myself, “not another miracle cure.” Curiosity, a slightly open mind, and a sense of obligation to my client prevailed and I went to RPM training with Soma Mukhopadhyay. Soma is a woman of science. Without preamble, she launched into neurology and the various learning channels of the brain – auditory, visual, tactile, kinesthetic. I appreciated the science because I had expected some serious hocus-pocus and snake oil. (Going on 19 years in the field has made me a little jaded about “new” techniques). About a half hour into training, a 14 year old girl, who is a very limited speaker with autism, came in for a demonstration. She was a beautiful girl with an infectious smile. She appeared to be gazing off in space at things no one else could see and was bopping along to a sound track that only she could hear. Soma immediately began to present a complex cognitive lesson. I thought that there was no way this kid was attending to or comprehending the information. However, the girl consistently answered each factual question correctly, spelling her answers on the letter board. Soma did not touch her or influence her response in any way other than to encourage her to point on the board. I began to pay serious attention at this point. Soma started asking increasingly complex questions. One of the questions was something to the effect of, “have you been to the zoo?” The girl spelled, “I have visited the zoo but am uncomfortable with animals in cages because I live in a glass cage called autism.” THAT was the moment that changed my life and clinical practice! After nearly falling out of my chair, I picked myself up and started furiously taking notes!  Instantly, names of clients flew in my head that I desperately wanted to try this method with because I knew they were smart kids trapped by autism.

I started incorporating RPM into my therapy immediately. Of course, I thought that with my amazing skills as an SLP, my experience with autism and overall awesomeness – I could improve upon Soma’s methods. WRONG! I had some ego deflating to do and experience to gain. After a several weeks of trying things my way with limited results, I tried it her way. It worked! It still took me some time to get my first word out of a kid on the letter board – loads of alphabet soup at first. I became fluent in my rapid prompting skills. I learned to prepare cognitive lessons that engaged the brain and elicited insights about my clients – who they are and what they think. Words became phrases; then sentences; then paragraphs. Some of my clients began to access open communication, meaning that they can express novel sentences to respond to any question or express any idea (just like you and I do) by spelling on the letter board.

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When you see how non speaking people with autism can communicate and show what they know – you can’t un-see it!  Experiencing this has irrevocably changed me and my clinical practice. This has not been an easy transformation. It wounded my pride to realize how much I misunderstood about autism. I wrestled with guilt. Why didn’t I know this before? What would the lives of my clients be like if I used this method with them 5, 10, 15 years before now? I have had to accept the fact that I may lose credibility and respect in the eyes of other speech language pathologists as well as others in the autism field by embracing this methodology. I have had to unlearn everything that I have been taught, and then in turn, passed along to students in my years as a professor of speech-language and education.

It has been pretty much universally accepted (and defined in the DSM IV) that autism is a disorder of “significant language delay/deviance; restricted range of interest and/or repetitive behaviors; and a qualitative impairment in social engagement.” Most experts believe that the many people with autism have some degree of cognitive impairment. As I have been using RPM, I have found this to be completely untrue! Each client has demonstrated themselves to be intelligent, emotionally attuned, desirous of social relationships and communicative -using language skills better than most speaking people! I now believe that autism is a motor disorder in which there is a significant disconnect between cognition and voluntary motor control of the body. Now, the only experts I believe are those with autism.

Accepting this paradigm shift has been difficult, uncomfortable and surprisingly emotional. It has taken me almost a year to wrap my head around all of this and find the words and courage to start writing about it in my blog. My clients have been the tipping point for me. Watching client after client find their “voice” through RPM has been amazing and inspiring. Each client, without fail, has expressed an immediate desire to reach out to help other non speaking people with autism. I no longer use the term non-verbal because my clients have shown me that they are PLENTY verbal – they just don’t speak. One hundred percent of my clients have expressed dissatisfaction with their education. My clients are so eager to learn anything and everything. I am constantly struck by their incredible patience, courage, forgiveness, desire to communicate, interact and tell their story. My clients have inspired me into action! Their courage has compelled me to relay their words to anyone who is willing to listen!

My clients have more to say, I have more to share with you. Still doubtful? That’s ok. Just keep an open mind, listen to the words of my nonspeaking clients, and follow and share their stories. Draw your own conclusions and see where this journey takes you!

~Elizabeth

RPM Happiness

Among a myriad of other emotions -I feel incredible happiness every time I have a Rapid Prompting Method (RPM) session with a client. The joy that comes from witnessing meaningful communication from a person who has lacked the motor control to express their thoughts through speaking is overwhelming!  I have always loved the work I do as a speech language pathologist, but, these days I find work invigorating and just plain happy.

When I first heard the song, Happy, by Pharrell Williams, it made me think of my work with kids with autism. (Listen along as you read – guaranteed to elevate your mood!) The second thing I thought about was Emma. (Thank you to Emma’s family for giving me permission to share her story on this blog). Emma and I have worked together for the past 9 years. She is probably the happiest person I know! Emma is always smiling and laughing and anytime you ask her how she feels her answer is inevitably, “Happy!”. Emma has made significant gains in her ability to speak over the last nine years.  Her words are clear, she is able to communicate a large range of basic needs, but she is not able to engage in meaningful conversation. Emma has a large repertoire of “scripted sentences”, rote phrases, she uses frequently to make requests or comment. She has difficulty using speech to initiate conversations and create novel sentences. While this speech can be very useful in terms of making her basic needs known, it is not always communicative, informative or satisfying. Is your communication restricted to just your basic needs?

Emma and I have been using RPM in our weekly therapy sessions since September. Very quickly, Emma was able to answer factual questions from cognitive lessons with one to three word answers spelled out on the letter board. Gradually, as Emma developed the motor skills and fluency for pointing to the letters on the board, her responses became longer and more detailed. Her language became more flexible, no longer spelling out the kind of rote sentences that she verbalizes. With each session, it became more obvious how much Emma knows and how truly smart she is! I have never doubted that Emma was smart – trust me – she has outwitted me waaaaaay too many times over the years for me to believe otherwise! But, now she was able to PROVE her intelligence, irrefutably, through her responses on the letter board.

Emma points to letters on a letter board to spell words to communicate her message.

Emma points to letters on a letter board to spell words to communicate her message.

On March 12, Emma broke through to “open communication” on the letter board. By open communication, I am referring the ability to create any novel sentence(s) on demand. For those of us who acquired the ability to talk naturally, through our innate, hard-wired language skills, we developed (and use) open communication skills automatically. When my clients reach the stage of open communication, it is noticeable! There is an obvious ease, fluency, precision of language and extremely clear communicative intent that was not present before. It is a moment for true happiness and extreme celebration. It is a moment that opens doors to unlimited communication!

Sometimes I incorporate videos or songs into the lesson during our RPM sessions.  The sessions are as much about learning as much as they are about communicating!

Sometimes I incorporate videos or songs into the lesson during our RPM sessions. The sessions are as much about learning as much as they are about communicating!

Here are Emma’s thoughts on happiness as expressed during a lesson we did on April 1, 2014.  (I have adopted the following protocol to transcribe my lessons: the lesson is presented in regular font; comments I make during the session or about the session are in italics; and the client’s responses as spelled out on the letter board are in all capitals).

Happiness

(We opened up the lesson by playing Happy by Pharrell Williams and got our happy on!) Emma, here are some quotes on happiness.  What do these quotes mean to you? 

“Most folks are as happy as they make up their minds to be.”  ~ Abraham Lincoln

MEANS YOU CAN BE HAPPY IF YOU WANT TO BE.  

“Happiness is when what you think, what you say, and what you do are in harmony.” ~Mahatma Gandhi

YOU GET TO BE HAPPY WHEN YOUR ACTIONS MATCH YOUR THOUGHTS.

Who said that?  GHANDI

“The Constitution only gives people the right to pursue happiness. You have to catch it yourself.”  ~Benjamin Franklin 

YOU MUST SEEK OUT HAPPINESS IT DOES NOT COME FIND YOU.

Who was Benjamin Franklin?  HE WAS PRESIDENT (close!  He was the 6th President of Pennsylvania but most people believe he was President since he is on money.)

“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.” Helen Keller

YOU CAN LEARN TO BE CONTENT NO MATTER WHAT IS HAPPENING IN YOUR LIFE.

Who was Helen Keller?  SHE WAS BLIND AND DEAF (note that I did not talk about who Helen Keller was during the lesson.  This is just one example of Emma demonstrating her knowledge that she has absorbed over the years, not from direct instruction.)

“We hold these truths to be self-evident: that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” Thomas Jefferson

BEING HAPPY IS A HUMAN RIGHT FOR ALL PEOPLE.

Who was Thomas Jefferson?  PRESIDENT

Do you know what document this quote comes from?   BILL OF RIGHTS (Holy Cow!!! Confession time – I had to look the quote to be sure of the source!)

Creative Writing:  What is your philosophy of happiness?  Create a “User’s Guide to Happiness!”  Be sure to state your definition of happiness and how one might achieve and sustain happiness!  

EMMA’S GUIDE TO HAPPINESS

I THINK IT IS EASY TO BE HAPPY. STOP WANTING TO BE DIFFERENT THAN YOU ARE. JUST BE YOURSELF AND ENJOY ALL THAT IS IN YOUR LIFE. INSTEAD OF COMPLAINING TRY BEING GRATEFUL.

I think we can all benefit if we follow Emma’s Guide to Happiness!  Enjoy all that is your life today!  ~ Elizabeth

Being heard

Since posting Ben’s words in Forever Changed and Huan’s words in Silent For Too Long, I have been flooded with phone calls, texts, posts and comments all expressing encouragement, wonder, empathy and accolades for Ben and Huan! WOW!  It is an absolute joy to work with these smart, kind and thoughtful young people but now that I have shared the experience with you and you have welcomed their accomplishments with open arms, that joy has increased exponentially! I work with several other amazing, insightful and witty non-speaking people who are finding their voice using Rapid Prompting Method (RPM) and the letter board. I will introduce you to them all in the coming weeks!

Successful communication requires a speaker and a listener. My clients using RPM are communicating for the first time and now you are their audience. Their words are powerful and profound. Thank you for hearing them. Thank you for the respect and attention that you are giving to their words. Thank you for your belief! Please share their words and help others understand, that non-speaking does not equal non-thinking. Non-speaking people with autism have so much to teach us. Autism has been such a mystery; I believe that the people who live with autism are in the best position to help us understand. All we have to do is listen.

I shared your comments with Ben and Huan. Both of them smiled, laughed and were positively beaming as I read your comments to them! I am pretty sure I noticed Huan blushing. Here are Ben and Huan’s responses to your kindness.

I AM OVERWHELMED BY EVERYONE’S BEAUTIFUL COMMENTS. ALL OF YOUR KIND WORDS INSPIRE ME TO KEEP WORKING TO FURTHER IMPROVE MY SKILLS ON THE LETTER BOARD. I AM SO GRATEFUL FOR YOUR ENCOURAGING WORDS. THANK YOU FOR LISTENING TO MY WORDS. YOUR BELIEF MEANS THE WORLD TO ME. ~Ben

I AM SO TOUCHED BY THOSE COMMENTS. I AM PROUD TO HAVE BEEN HEARD AND AM DELIGHTED WITH THIS FEEDBACK. I NEVER WOULD HAVE BELIEVED SO MANY PEOPLE WOULD HAVE CARED ABOUT WHAT I HAVE TO SAY. I AM GRATEFUL. ~ Huan

Spread a little love today, let someone know that you have heard them! ~Elizabeth

 

 

Silent for too long

I have been overwhelmed by so many positive comments, posts and shares on Facebook about the last blog entry on Rapid Prompting Method (RPM) and Ben‘s powerful words. I can’t wait to share your comments with Ben when I see him on Tuesday. Ben has repeatedly communicated a desire to help other nonspeaking people find their voice. I suspect he will be very pleased to know that his voice has been heard and received with such compassion. I promise to report his reaction back to you!

Today, I would like to introduce you to Huan. Huan is another client who is using RPM and Huanthe letter board to communicate. I started using RPM with Huan in September. He has steadily moved from choosing responses on paper, to spelling individual words, spelling short phrases, answering questions about cognitive lessons, and now open communication using the letter board. Huan and Ben are both applying to the youth summit for people with disabilities. Huan wrote this application essay on the letter board over two sessions. My sincere gratitude to Huan and his family who have consented to let me share his story and his words!

I AM HUAN. I AM SEVENTEEN YEARS OLD. I AM REALLY EXCITED TO APPLY TO THIS SUMMT. I WANT MY VOICE TO BE HEARD ON ISSUES REGARDING INDIVIDUALS WITH DISABILITIES. MY DISABILITY IS THAT I CANNOT SPEAK IN A WAY THAT LETS ME EFFECTIVELY COMMUNICATE. I HAVE BEEN UNABLE TO HAVE MEANINGFUL INTERACTIONS WITH OTHERS BECAUSE I WAS NOT ABLE TO TALK. NOW I CAN TALK USING THE LETTER BOARD. IT HAS CHANGED MY LIFE FOREVER.

MY LIFE HAS BEEN LONELY AND FRUSTRATING BECAUSE I COULD NOT TELL PEOPLE HOW I FELT ABOUT ANYTHING SO I WAS LEFT OUT. I COULD NOT FORM MEANINGFUL FRIENDSHIPS BECAUSE I CAN’T TALK VERY WELL. MY EDUCATION HAS BEEN UNFULFILLING BECAUSE I HAVE NEVER BEEN CHALLENGED AT SCHOOL.

NOW MY LIFE IS HAPPIER BECAUSE I CAN TALK USING THE LETTER BOARD. NOW I HAVE THE OPPORTUNITY TO ENGAGE WITH PEOPLE IN A NEW WAY. I HAVE A CHANCE TO HAVE A REAL FRIENDSHIP WHERE I CAN CONTRIBUTE TO THE CONVERSATION. PERHAPS I CAN NOW PURSUE GIVING TO SOCIETY INSTEAD OF SOCIETY LOOKING AT ME AS A BURDEN. MOST IMPORTANTLY, I WOULD LIKE TO BE ABLE TO ACCESS AGE APPROPRIATE CURRICULUM. I AM EAGER TO LEARN ABOUT EVERYTHING MY SAME AGED PEERS ARE LEARNING. I KNOW THAT I AM CAPABLE OF LEARNING ANYTHING.

I HOPE THAT MY VOICE WILL BE HEARD. I HAVE BEEN SILENT FOR TOO LONG. NOW I HAVE TO SPEAK FOR THOSE WHO ARE STILL STUCK IN SILENCE.

Doing RPM doesn’t have to be formal! Huan and I enjoy relaxing on the couch in front of a sunny window.

Huan’s words are always gentle and thought provoking. I find myself thinking about his words for days after our sessions. I am humbled by how much I have to learn from Huan and other nonspeaking clients who are no longer silent. Thank you for joining us on this beautiful journey!

~Elizabeth

Forever changed…

Have you ever had a friend who goes “underground” for awhile? You don’t hear much from them for a long stretch of time, only to have them reappear in your life full of energy and having made lots of changes? Well, that is what has happened with me and this blog! I am happy to announce that I am back and I have quite a few new things to talk about and share with you!

So, what have I been doing? Working with lots of clients in my ever growing private practice, developing an app (which is nearing completion after two plus years of work!!!), completely changing every belief I have about autism and transforming the way I work with clients with autism! Yes – EVERYTHING! This last bit has been amazing, eye-opening and truly life changing and is what I’d like to focus on in today’s blog.

In May 2013, I was given the opportunity to learn about Rapid Prompting Method (RPM) from its founder, Soma Mukhopadhyay. From the first moment that I saw non-verbal children communicating sophisticated thoughts and ideas by pointing to letters on a letter board, I knew my therapeutic practice could never be the same. I have SO much to say on this topic that will follow in future blog posts.

I can think of no better way to introduce the changes in my thinking, practice and life than through the words of Ben. Ben is a client whom I have worked with for ten years (thank you to Ben’s mother who gave consent to use his name in this blog). These are Ben’s words, spelled out on the letter board, from a session we had this week. In this session, Ben used the letter board to compose an essay for an application to attend a summit for an advocacy group for people with disabilities. The only instructions I gave to Ben were the parameters of the essay: How has having a disability impacted your life? What strategies do you use to meet these challenges? Describe a turning point of how you dealt with your disabilities. The response below is 100% from Ben – not touching him, no prompts, suggestions or questions from me!

MY NAME IS BENJAMIN. I AM EIGHTEEN YEARS OLD. FOR SEVENTEEN YEARS, I HAVE NOT BEEN ABLE TO TALK OR COMMUNICATE IN ANY MEANINGFUL WAY. I AM AUTISTIC AND NONVERBAL. I CANNOT CONTROL MY BODY OR MY MUSCLES SO I CANNOT TALK RELIABLY. NOW I CAN TALK USING THE LETTER BOARD. SINCE LEARNING TO TALK, STRANGE THINGS HAVE BEEN HAPPENING. MY WORLD HAS TURNED UPSIDE DOWN. NOW I AM NO LONGER A PRISONER TRAPPED INSIDE MYSELF. NOW I AM A FREE MAN WITH NEW POSSIBILITIES.

BEING UNABLE TO SPEAK HAS MADE MY LIFE UNUSUALLY STRANGE, UNUSUALLY DIFFICULT, UNUSUALLY BEAUTIFUL AND UNUSUALLY INTERESTING. I HAVE BEEN OBSERVING AND LISTENING MY WHOLE LIFE AND NOBODY KNEW. BECAUSE I COULD NOT TALK, EVERYONE ASSUMED I COULD NOT UNDERSTAND. SCHOOL SPECIALISTS LABELED ME AS RETARDED AND INCAPABLE OF LEARNING. AS A RESULT, I HAVE BEEN SUBJECTED TO A LIFETIME OF MEANINGLESS EDUCATION. I HAVE CAUSED YEARS OF TANTRUMS TRYING TO PROTEST MY SITUATION IN LIFE. NO ONE UNDERSTOOD MY COMPLAINTS. THEY CHALKED IT UP TO BAD BEHAVIOR.  I HAD NO OTHER WAY OF EXPRESSING MYSELF.

ALMOST NO ONE BELIEVED IN ME EXCEPT MY FAMILY AND EV. THEY NEVER GAVE UP ON ME EVEN WHEN I MADE IT DIFFICULT TO WORK WITH ME. THEN EV TAUGHT ME TO USE THE LETTER BOARD AND MY LIFE CHANGED FOREVER. NOW I AM NO LONGER SILENT.  NOW I AM NO LONGER A VICTIM OF MY LACK OF MOTOR CONTROL. NO LONGER AM I UNUSUALLY STRANGE. SINCE I CAN COMMUNICATE, I AM NO LONGER IN ISOLATION BUT A MEMBER OF SOCIETY.

SO NOW I HAVE A MISSION TO STAND UP FOR NONVERBAL PEOPLE EVERYWHERE AND HELP THEM FIND THEIR VOICE TOO. MY ONLY OTHER GOAL THAT MEANS AS MUCH TO ME IS, THAT OTHERS DO NOT HAVE TO SUFFER THROUGH MEANINGLESS AND INSULTING EDUCATION LIKE I HAVE HAD TO ENDURE.

Ben points to letters on the letter board to spell his message.

Ben points to letters on the letter board to communicate by spelling out words

Powerful words from an amazing person!  Ben is not the only client who is now communicating with the letter board!  I am using RPM with several clients and each of them is finding their “voice” – sometimes slowly, sometimes quickly!  I have been honored to be a part of their journey, to learn how to do things differently and to help tell their story. I hope that you will continue to follow along and hear what my clients have to say!

~Elizabeth

Wordy Wednesday: Listening Ears!

CLICK THE IMAGE to download

Happy Wednesday, friends! It’s time to put on your listening ears, because today we bring you a set of images that represent minimal pairs – two words that differ from each other by only a single sound. One little phoneme often makes all the difference in language: it can turn the beach into a peach, or a bug into a bus, or a ship into a sheep. These minute phonemic deviations can have a tremendous impact on the message.

Sometimes, children have articulation difficulties in which they have trouble producing a target sound, even though they can hear the distinction perfectly well. Often, such

CLICK THE CLOWN to download

difficulties are limited to just a few sounds, with the child making predictable substitutions (such as /sh/ for /s/ and vice versa). The trick with these guys is practice, practice, practice language production. Give verbal cues to help teach the correct mouth posture (“make your snaky sound!” works well with little guys), and help the child concentrate on where his lips, tongue, and teeth should be.

Practicing minimal pairs can also be useful receptive language practice. Some kids may have difficulty hearing or understanding the difference between phoneme sounds; in some cases, this may be due to hearing impairment, but in many cases the issue is more

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cognitive or attentional. Present a minimal pair of pictures, then ask the child to point to (or hand you) one of them. Don’t be discouraged if it seems challenging at first! Just keep practicing!

When your child has mastered this auditory discrimination task, you can ratchet up the difficulty in a few ways. Add background noise to your environment (music, conversation, television); this makes discerning the minute differences between these pairs of words more challenging, which requires the child to use more attentional resources. Or incorporate multi-step instructions into the activity: “First, write your name, then hand me the peach.” This introduces a memory component to the activity as well; the child first has to distinguish the correct item, then she must hold that information in memory for a short time before acting on it.

CLICK THE IMAGE to download images one per page, with words!

We hope your week is wonderfully wordy!

~ Growing Kids Therapy Center

Wordy Wednesday: Get Your Gobble On!

Happy Wednesday, friends! This week, we bring you a collection of Thanksgiving-themed pictures from around the web to spark language with your little ones in the upcoming holiday week. Like our recent Story Time post, these pictures lend themselves to language work at multiple levels. Work on receptive and expressive vocabulary. Ask the child to point to items as you name them (receptive language), or have him name objects in a scene (expressive). Use some of the tricky letter sounds that surround Thanksgiving to work on articulation. (Turkey can be such a troublesome word!)

CLICK TO DOWNLOAD flashcards.

At the discourse or pragmatic level, these pictures can be used to generate stories. Have the child describe scenes in detail, making sure to provide the story essentials: who is there, what are they doing, where are they, when is this taking place, why might this be happening? Ask the child to relate some of these pictures to her own family Thanksgiving celebrations, or have her tell you the history of Thanksgiving. For more advanced kids, you might have them do a bit of research on Thanksgiving traditions and rituals online, then tell you what they learned. Humor is another higher-order language skill that can be difficult to teach or explain. Some of these pictures are subtly silly (and some are not so subtle). If your kiddo finds one of these pictures amusing, have her explain why it’s funny. Sometimes, the humor comes from word play, other times from more slapstick or physical silliness.

Since we love activities that work on multiple skills at once while injecting some fun, you

CLICK TO DOWNLOAD images one per page.

can use these pictures to sneak in some fine motor work alongside your language and cognitive tasks. Have your child write a story about one of the pictures or draw his own version of a scene.

From the Growing Kids family to yours, have a wonderfully Wordy Wednesday, and a safe and happy Thanksgiving! ~Elizabeth and Melanie