Tag Archives: RPM

“Be Nice To Each Other”

Be nice to each other” – this was the final sentence Emma wrote to Soma on Friday before we flew back home.  She wrote it in answer to Soma’s question, “Any message to the world?  To mankind?”

Be nice to each other.

We returned home late Friday night.  I was riding on a cloud of excitement, newly found realizations, solid, unequivocal confirmation and proof that not only is Emma completely aware of her surroundings, but she has profoundly wise insights into the world, other people and herself.  She is one brilliant girl.  She has managed to learn despite having almost no formal education, she knows her multiplication tables as though she’d been studying them for years.  She knows how to solve mathematical word problems, she understands things I have only come to understand very recently and her compassion for others is astonishing.  She has been spoken harshly about.  She has heard what others have said about her in front of her as though she could not hear or understand.  She knows what others think of her, and yet, she understands these things are said in ignorance.

So excited was I, that I slept fitfully, and Saturday morning awoke to blinding, crushing, devastating sadness.  I felt the weight, the enormity of my daughter’s life and my role in all that has happened to her these past nine years since she was diagnosed.  My mind latched on to each and every misstep, the mistakes piled up so quickly, one on top of the other I felt I couldn’t breathe.  I spent Saturday in a state of crisis.  I completely broke down.  And the thought that continued to blast in my mind was, “How will I ever find my way out?  How can I forgive myself for what I’ve done?  How does one forgive another who has made the decisions I’ve made?  In essence, how can you forgive what is unforgivable? And yet, she has.  And therefore, so must I.

Be nice to each other.

And here is the thing about all of this.  Berating myself, hating myself, NOT forgiving myself allows me to continue the cycle.  It wears me down, threatens to break me when I need to be strong.  But I also know that when I am overwhelmed with feelings, telling myself that I must not feel the things I am feeling, does not make them go away.  Tamping the feelings down, pretending they do not exist, none of that actually helps me move through them.  Criticizing myself for hating myself does not make me hate any less.  And so I accepted that this was where I was.  And for one day I sat with all those awful, painful feelings and felt them.  Neither pushing them away or adding to them by criticizing myself for having them.  I sat with them one excruciating hour after the next and allowed them to be.  And all the while I repeated Emma’s words, Be nice to each other. And I allowed that to include myself.  By Sunday morning I felt my strength returning.  I felt that old determination returning.  I could feel energy flowing and I knew.  I knew.  As long as Emma gives me permission to, I will tell all who will listen, at least some of what she is writing.

When I asked Emma yesterday if I could write today’s post using her words as the title she nodded her head, yes, and smiled.  Last night before going to sleep she said, “Mommy?  No school tomorrow?  I don’t like new school.”  And so I promised her, I promised I would do everything in my power to help her school understand, but I know I have one hell of a battle before me.  And I need every ounce of strength I’ve got in me.  But maybe, just maybe some of the video clips I have of Emma writing these things will have the power to change even a few minds so that they will be swayed and will come to understand what I have.  Not only is my daughter capable, she has a great deal to teach us, but all of that will be lost if we are not willing to open our minds and listen.  This is the non autistic limitation of our neurology.  This is our neurological deficit and we will have to work mightily to change that.

Emma at Halo – September 26th, 2013

Em iPad copy

My Star: Emma

Rhyming words, poetry, fables, history, science, multiplication, math word problems…  these are the things Soma has covered with Emma over the last three days.  Emma went from pointing to one letter at a time, to writing out several words and even whole sentences describing profound thoughts, insights, doubts and concerns, and I sat there witnessing this outpouring of words, this torrent of letters that, when added up, evoked emotion and identification and concern and understanding.  The power of language.  The power of communication.  There is tremendous power in both.

This has been a profound few days; transformative, exhilarating and exhausting.  I have watched my daughter work and she has worked very, very hard.  I have watched her and I have marveled at her and been dismayed by her and astonished with her.  I have laughed and wept and listened and listened and listened some more.  She has said things that have provoked more questions than answers, but she is here, very much rooted in this world and not, as many suggest or seem to think, somewhere else, off in her own “little world”.

I cannot write about anything specific this morning, I’m too tired and Emma has said she is too.  We have two more sessions today with Soma and then we head home.  We are lucky.  We are incredibly fortunate that we’ve had the means to do this, to come here, to stay for the week so that Emma could work with Soma.  All the young children Soma has worked with over the years, so many of them are now writing books, and are at an age where they are publishing their hard-won  words; there are too many to ignore.  They are communicating on letter boards and iPads and keyboards, an unbelievable output of thoughts, ideas and opinions.  “I want to be able to talk,” Emma wrote yesterday.  And maybe, just maybe one day she will be able to talk the way she writes, but until then we will keep providing her with every available resource we can find so that she has a better chance of achieving that goal.

Em standing beneath the “Star of Texas”

Em & Star of Texas copy

Our Amazing Adventure

Emma gave me permission to blog about some of our day yesterday.  I asked her, “Is there anything you typed that you do not want me to write about?”  She typed, “No.”  So… here goes…

We are in Texas to work with Soma Mukhopadhyay.  I’ve written about Soma many times before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  By the way, Tito, Soma’s son (who is non-speaking and autistic) is the author of several books.  I highly recommend all of them.

Soma began the session using a stencil board and having Em point to the letter she wanted with a pencil, then took the pencil, wrote the letter down, handed the pencil back, and on they went.  By the afternoon session Em was pointing to the first letter and then the next and the next, spelling out whole words and even several words before Soma wrote all the letters down.  As the sessions are all being videotaped, the stencil board is by far the best thing to use, as it is clear when you are watching the tape, which letters Em is pointing to, where as a laminated letter board, or a keyboard would be more difficult to see as clearly.  Soma does not touch the person she is working with.  There is no physical contact of any kind, unless initiated by the other person.

Some people have accused Soma of manipulating the stencil board.  I have watched Soma work with my daughter many times, as well as with other students and beyond the natural slight movement that occurs when holding an object with one hand, I have witnessed no manipulation of any kind.  With Emma she used a full alphabet stencil board, so even if one wanted to somehow make her point to a particular letter this would be impossible without physically touching her.

They began discussing the weather and Em wrote that she likes it when it is windy.  Soma asked her to tell her anything at all about windy weather and Em wrote, “flying leaves”.  They then discussed temperature, how heat rises, the sun, and finally Soma asked her for the name of any state.  Emma wrote, “Colorado”.  Soma asked her why she chose Colorado and I smiled knowingly, believing that I knew the answer and expecting her to write something about how this is where her Granma lives and where we go to visit several times a year.  But Emma had something else in mind.  She went for the letter “b” and then wrote “Boulder”.

Okay, I thought.  Boulder, that’s kind of weird.  Richard’s best friend lives in Boulder, maybe she’s thinking about Steve.  Meanwhile Soma asked, “What happened there?”  And Emma wrote, “flood”.  And I sat there stunned.  You see, we are not a family that ever turns on the television unless it’s for a pre-recorded show or to watch a dvd.  We do not listen to the radio.  We no longer have the NYTimes delivered to our house as both Richard and I receive it online and read the news from our iPads.  Neither Richard nor I spoke (that we can remember) about the devastation that occurred because of the flooding in Boulder recently.  And yet, there is absolutely no doubt that others have and did discuss the floods in Emma’s presence, though it’s doubtful anyone spoke to her about them and yet here she was, writing about the floods.

The afternoon session began with Emma choosing “story” from a choice between “story” and “number”.  Soma proceeded to tell a fable about a crane and a fox who were friends.  The fox invited the crane over for dinner and prepared meat for the crane which was almost impossible for the crane to pick up with his beak and the fox watched with great delight as the meat fell from his beak over and over.  Soma talked about how the fox was having fun, but mean fun and throughout all of this asked Emma clarifying questions about various words, all of which Emma knew without hesitation.  But the fox underestimated his friend the crane, Soma continued.  She then asked Emma what she thought about the word underestimated and Emma wrote, “less expectation”.  The story continued with the crane being polite and asking the fox to come over the next day for dinner at the crane’s house where upon the crane served the fox soup in a jar that the fox could not drink, except to lick the sides.  Soma then asked Emma for the moral of the story and Emma wrote, “do unto others”.

Soma used Emma’s interest (anxiety?) about the time and how long the session was going to last, to discuss time and the calendar year and then asked Em “how would you like to be treated by others?” Emma wrote, “I want to disappear when people talk about me.”  Soma asked a clarifying question about situations that she was specifically referring to and asked if Emma felt that way when people said nice things.  Emma said, “no”.

Later, using a laminated “yes” or “no” card that Rosemary Crossley uses and gave us, I asked Em more about this.  It came out that people are “mean” to her on the school bus.  I asked her if people were mean to her at school and she wrote, “No.”

Today we go back for Emma’s next two sessions with Soma.   As they say in the 12-step rooms – more will be revealed.  I cannot write about how I feel, other than to say, Soma is doing amazing work.  She has been doing this work for close to two decades, everyday for hours at a time.  I am learning a great deal, but will I be able to replicate what she is doing?  No.  I won’t.  Not yet, anyway and I don’t expect to, but I can get better with practice and I can apply what I see Soma doing with other things I’ve learned that Emma has responded to.  But more than anything else, I can continue to stretch my limited mind and limited thinking, (my neurological deficits) and practice, continue to practice expanding my knee jerk “truths” until one day perhaps I will no longer feel incredulous at what I continue to witness, not only with Soma, but with a great many people, all of whom have devoted their lives to finding ways for people like my daughter to communicate.

I want to disappear when people talk about me.

*I have read this to Emma to make sure what I’ve written is okay to publish.  She has given me her permission.

Soma and Emma

Soma & Em

Autism And Stress

Lest you think this post is about stress felt by parents, let me quickly say, it’s not.  This post is about the stress I have observed my daughter experiences.  The stress she feels and that I (often unwittingly and unknowingly) exacerbate.  This is not about  beating myself up, but is an honest look at how my reactions can make matters worse.  As I’ve said before, it is my hope that as Emma’s mother I continue to make progress in my parenting, but also as a human being.  Just as I hope and expect my daughter to learn and progress, I hope the same for myself.

“We have to minimize her stress.”  This was something Soma Mukhopadhyay said during Emma’s most recent session with her.  It was in answer to my question about when to graduate from using a letter board to a computer keyboard during her RPM (rapid prompting method) sessions.  During the session Emma pointed to a letter, then Soma wrote the letter down, Emma pointed to another letter, and on it went until Emma had written an entire sentence.  This technique, of one letter pointed to, one letter written down, helps with Emma’s impulsivity, which is amplified when she’s feeling stress.  It was during this same session that Emma answered Soma’s question about whether she could feel colors, with, “Of course.  That answer, those two words spelled out so easily by my daughter, made me laugh and cry at the same time.

My daughter types and does things that astound me.  It doesn’t matter how much I believe in her competence, I am continually astonished, ecstatic and heartbroken all at the same time.  Astonished because of the ease and confidence with which she will say something like, “Of course” in answer to a highly complex question, heartbroken because for so long these were words I never imagined I’d hear, let alone learn what I am now learning about her.  I no longer believe these feelings are mutually exclusive to each other.  Now, instead of wondering whether it was all a dream, I celebrate the exquisite beauty of my child and all she does that constantly reminds me of just how vast and incredible the human mind is.  I am humbled, on a daily basis, in the best possible way.  I would not trade the awe I get to feel when in the presence of my child for anything.  Seeing my daughter defy every limited idea about her that has ever been uttered, including my own thinking, gives me tremendous hope for this world, for my own growth and for humanity.

I witness greatness when I watch her work and it is a beautiful thing.  So when she expresses upset, which I now am able to identify as stress, it breaks my heart in a way that it didn’t, before I understood.  What I used to think of as stubbornness or a temper tantrum or a form of manipulation, I now see as a product of the enormous stress she feels.  And I have to wonder, exactly how much stress must she cope with?  I have talked about what I perceived to be her “resistance” in typing, but am now beginning to think of it as less “resistance” and more stress.  Stress from how very difficult it is.  Stress from expectations, stress from making a mistake, stress from doing something different, and those are just the stresses I can easily come up with and relate to.  I’m guessing there are many more I am completely unaware of.

Stress is something that, when she is gripped by it, all systems seem to simultaneously crash.  To make matters worse, my stress level rises in direct proportion to hers and I am confronted with how unhelpful I am when I allow my stress to overwhelm me as was the case the other day.  My response to Emma’s panic was to panic too.  So much so that I could barely breathe.  “You have to calm down!” I instructed her, while my own sense of calm, shattered so completely, was a perfect example of what NOT to do.  It was the antithesis of modeling behavior sought and it reminded me of something my father used to say to my siblings and me – “Do as I say and not as I do!”  I think he thought it amusing, however I remember it as anything but.

There are times I cannot predict, when something happens, things I don’t know or understand, and suddenly my seemingly placid, happy child is in a turmoil of upset.  There is often a sensory component I’m unaware of.  During these times sentences are repeated that are obviously meaningful to her, but that I find confusing.  As her stress escalates, her ability to verbalize what’s going on plummets and my frenzied request that she “type it out” does nothing to alleviate the situation.  The longer all of this goes on, the more I feel completely ill-equipped to keep my stress level from going into the red, let alone help her with hers.  That Emma seems convinced I am, not only capable of pulling it together, but will be able to help her, is an example of my daughter presuming in my competence, which makes me all the more determined to work through my own issues and do better.  I owe it to her.

September, 2009

September '09

Soma Mukhopadhyay ~ Training Day 2

I’m halfway through a four-day training with Soma and I have filled more than half a legal sized notepad with notes.  Yesterday we covered Mental Mapping/ the different stages of RPM and Implementation.  I told Soma about my encounter with the child who didn’t want to work and immediately hit themselves.  I described how I’d had them spell “hitting” on the letter board and how this had immediately diffused the situation.  Soma then gave me more terrific suggestions on how to devise a lesson plan around an action such as hitting.  An example of this is (I”m making this up) “I would like to know more about hitting.  What else can you hit?  Do you hit the sky or a ball?”  Soma spoke of how when emotions are running high, switching to numbers and math, which have no emotion can be helpful during emotional outbursts.  “How many times can you hit the ball? Here let’s count.  1, 2, 3, 4, 5.  You hit 5 times and if you hit once more, that would be 87 times or 6 times?”

We spent a great deal of time discussing the ways in which one can learn about a student through their preferences, stims, what they’ve been exposed to, skill levels and abilities, tolerance levels, acquired knowledge and defenses.  Soma then covered how one goes about implementing all of this through lesson plans.  Each step of the way one presumes competence in the student’s ability to learn and be taught without presuming that they already know how to read, write, add and subtract.  Through the various activities it quickly becomes clear whether the student needs to be shown how to spell a word such as “hitting” or whether they already know the word.  On the first day one of the students, whom Soma had never met before, sat down and after working with her for fifteen minutes or so, was asked what his favorite color was.  She had him choose from one of two stencil boards for the first letter.  From that board he chose the letter “r”.  He then proceeded to type ‘r’, ‘e’, ‘d’.  The following day a number of the people  taking the training expressed skepticism that the student actually could read or write.  One suggested that red may not have been his favorite color.

When asked how they knew that he couldn’t read or write, they weren’t able to give specific reasons, it seems many just assumed he could not.  It reminded me of the years and years I spent believing a whole variety of things about my own child, which turned out to be untrue.  I had no proof that the things I thought were actually true, I had just assumed and then behaved toward her as though it were fact.  Perhaps one of the single most destructive things we can do to our children, students, the people we meet is to make assumptions about their intelligence and abilities.  Beliefs based in nothing other than unfounded assumptions and our own biases of those who look or seem to us as not being capable.  These assumptions are dangerous and can do real harm.  As I’ve said before ~ to presume competence and be wrong will do no harm, to presume incompetence and be wrong can and will do tremendous damage.

Soma – 2013

Soma

“I Am In Here” – Autism

There’s a terrific new book entitled:  I am in here:  The Journey of a Child with Autism Who Cannot Speak But Finds Her Voice by Elizabeth M. Bonker and Virginia G. Breen.  The title is a line from the poem  Me written by Elizabeth when she was 9.   The story is yet another example of a nonverbal child with autism who was helped by Soma Mukhopadhyay’s Rapid Prompting Method.  Elizabeth’s mother, Virginia has tried any number of therapies with the hope that something, anything will help her daughter.  It is not a story about a cure, but rather a message of hope in the face of continual struggle and perseverance.

Virginia writes about using a three pronged approach in her battle with autism – Mind (academics), body (biomedical interventions and diets) and Spirit (the more difficult concept of something greater than ourselves, which Elizabeth seems to have a solid grasp of.)  The mind, body & spirit concept particularly resonated with me as it was this very idea which captured my grandfather, Walter Paepcke’s imagination when he envisioned a place of contemplation and learning in his creation of what came to be known as the “Aspen Idea” more than 60 years ago in Aspen, Colorado.

I can claim full allegiance to the mind and body portion of this, however I must admit the spiritual piece continues to allude me.  Though a close friend of mine said to me recently that for a person who professes not to believe, I certainly spend a great deal of time thinking, reading and discussing the subject.  She then said, “It’s kind of like the wife who’s husband everyone knows is having an affair.  She’s the last to know.”  When I answered her with a perplexed look, she said somewhat exasperated, “Come on, Ariane.  You’re the most spiritual non-spiritual person I’ve ever met.”

I’m pretty sure she meant that as a compliment.

For more on our journey with Emma through her childhood marked by autism, go to:   Emma’s Hope Book