Tag Archives: Halo

“Voices”

Posted on January 21, 2014 by | 11 comments

The Halo Center has published a little pamphlet of Autistic people’s writing. It’s called “Voices” and this year’s issue – “Voices” 2013 edition –  is available for purchase ‘here‘.  One of Emma’s fabulous folk tales is in it, along with dozens of others.  For anyone who is even remotely interested in Soma Mukhopadhyay’s Rapid Prompting Method or RPM, it is a great sample of the writings of a wide range of people of all ages who do not rely on spoken language to communicate, but who write to communicate.

“Butterflies used to be sticky as butter.  But they had curiosity.” ~ Emma

I am not going to reprint Emma’s entire story here as I hope some of you will go over and purchase a copy.

Soma and RPM have completely transformed our lives.  It is my dream that every school, every educator, every therapist, and all people who are in the field of autism have the opportunity to witness someone like my daughter writing her thoughts on the letter board.  Eventually Emma will write on her iPad and computer, but for now she is using a laminated letter board with me, her iPad with the person she sees here and the laminated board, which she even holds herself at times, with Soma.

A Session With Soma

A Session With Soma

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How We Got Here

Posted on January 8, 2014 by | 48 comments

I was asked recently to talk about the process that led to my daughter being able to write the insightful posts she’s been writing of late.  And while I initially thought I HAD written about all of this and so much more throughout this blog, upon further reflection I realized I have not written about the process in a condensed form, so will attempt to do so now.  (Wish me luck.)  For those of you who are interested in a more detailed, chronological version of what we’ve been doing that has led to Emma writing posts like ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this’ and ‘this‘ for this blog (and to see the daily progress) you can enter terms such as, RPM, Halo, Soma, communication and non-speaking in the “search” box or just begin reading the posts starting in mid-September until now.   For those of you who are REALLY curious, you can go back to October, 2012 when I went to the Autcom Conference.

There’s no way to say that on such and such date everything changed.  Like so much in life it was the incremental, seemingly, not-so-important things that occurred one after the other that then allowed for the next thing and the next until there was that moment we remembered and now look back upon and say, “oh yes, that was when everything shifted.”  Our version of having a – Helen Keller moment –  the day when W-A-T-E-R suddenly made sense, didn’t happen.  At least not like that.  There wasn’t any ONE moment when it all changed, but more a series of moments one after the other that led to a number of “OH!” moments.

One of those “OH!” moments was when Emma went to see Soma Mukhopadhyay (I wrote about that session ‘here‘) and we sat with tears streaming down our cheeks because Emma knew how to spell October and that it was a month in Autumn.  Another moment, previous to that, was when Emma was working with Pascal (documented ‘here‘) over a year ago.  Pascal “asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.”

In retrospect it seems incredible that all of this came as such a shock to us, but it did.  As I’ve said before, we knew nothing.  Literally.  Nothing.  But we thought we knew a great deal.  We knew what we’d been told up until that point and then it seemed as though over night, we realized everything we thought we knew was wrong.  So it was little moments just like these, over and over and over again, that continued to happen leading up to the first time I took Emma to see Soma in Texas (described in more detail ‘here‘, ‘here‘, ‘here‘ and ‘here‘) last September and then returning home and not being able to replicate what Soma was doing. But I was so determined and had to fight how depressed I felt because Emma seemed unable to write words that I’d just seen her write with Soma and yet with me, nothing.  Nothing at all.  There was self-doubt and fear, just tremendous fear that I wouldn’t be able to learn how to do this.  Fear that I would never be able to communicate with my daughter in the way I witnessed her communicating with others like Soma and Rosie and Pascal and Harvey and Leah.

So I had to begin at the beginning with simple choices and felt so impatient and so worried that this was how it was going to be for the rest of our lives.  But I kept showing up each day and making us do our “study room” together setting a timer for ten minutes and then 15 and then 20 and eventually up to 45 minutes and making lesson plans and wondering, wondering, always wondering whether she would be able to get to the point where she could trust me and write with me as I saw her writing with Soma.

I found a woman in NYC whom Soma had trained and we began taking Emma to see her too and I studied the videos of Soma working with Emma and I made notes and spent hours and hours pouring over them and making lesson plans and practicing.  I wrote out scripts of exactly what I would say during our “study room” session, leaving nothing to chance and I kept at it. Finally, after what seemed like an eternity, but actually it was more like six weeks, I arranged to have a Skype call with Soma, having sent her a video of me working with Emma.  Soma advised me to ask her one open ended question at the end of each lesson, which I hadn’t dared do as the one session I had, it was a disaster and she wouldn’t answer me.  I said as much to Soma.  I told her I didn’t think we were ready for that and Soma said, oh yes, but she’s ready.  You must ask something simple at the end of each lesson. So I did.  I did because Soma was so matter-of-fact and sure that this was what needed to happen next.

Emma began answering these open ended questions, at first with a few words and then with longer, more complex sentences.  I began to ask clarifying questions and now…  now look at her go!  It makes me cry thinking about this actually.  I couldn’t have known it would all happen as quickly as it did.  At the time, the process seemed to take forever, but looking back one’s perspective is different and I see it as very fast and I’m just so grateful for all that work, for all those days I struggled and cried to my husband and didn’t believe it would ever be any other way…

By the way, I DO think those Helen Keller moments that Hollywood then immortalizes, has all of us very impatient and thinking life is like that. Of course you and I know, life isn’t so simple or easy, nothing ever is. There’s work, hard, hard work and hours upon hours of showing up over and over again, and then slowly change occurs and it seems incredible, even miraculous!  But no one sees all that work, all those days when things didn’t go well, all those days when tempers flared, when there were tears and frustration and doubt and even disbelief that it would ever be different… until it is.

To all of you reading this – this has been my experience, as a parent, as someone who has always been terribly impatient, but determined.  Emma’s experience has been different (I’m hoping she’ll want to write about that at some point.) Everyone’s experience will differ, but perhaps, just perhaps, my experience will be useful to those of you just beginning, or will bring a smile of recognition to those of you ahead of me, either way, none of us need do this alone.  I didn’t and I am so grateful to all of you who have helped me help my daughter get to where she is now.

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

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Patience

Posted on October 7, 2013 by | 22 comments

The strangest experience I’ve encountered with my daughter is seeing her work with someone like Soma Mukhopadhyay or Rosemary Crossley or Pascal Cheng or Harvey Lavoy.  I don’t know that one can ever really be prepared for the flurry of emotions that threaten to overwhelm as you sit and watch your non fluent speaking child write profoundly insightful things, show their vast intelligence and knowledge despite having had almost no formal education and what little they’ve had it was most definitely not anywhere near what they are capable of or even at age level.

To watch them so easily converse through writing, or what looks so easy as I sit witnessing…  it is like nothing else I’ve ever experienced.  The only thing I can liken it to was when I was eight years old and my older brother told me that the universe was infinite.  I remember saying that couldn’t be true, that it must end somewhere, and he looked at me and smiled.  Then he asked, “if it ends, then what’s on the other side of the “end”?  And I sat there mesmerized by this idea of infinity, trying over and over to imagine what that looked like, and my mind coming up against the impossibility of this concept, so conditioned, already at the age of eight to think of things as being limited.

So inevitably, after we return home from seeing these various people, or after they pack up their things and leave, I am filled with optimism.  After all what we’ve just witnessed  fills us with hope and the future, our child’s future is limitless.  Every time, without fail,  I am filled with astonishment that my daughter isn’t enthusiastically and cheerfully typing or writing her opinions and thoughts about things with me.  I’ve discussed this with my husband, I’ve spoken to close friends, I’ve talked to other parents and always it is variations on this story.  The incredulous parent with the child who does not seem overjoyed with the idea of continuing to do this all the time, or even any of the time.

At first I spoke of it as resistance, but that puts the onus on my child and I’ve learned to be very careful with words like that, they are far too close to the whole, “you just have to try harder” idea, which I know both for myself and for her is detrimental.  This isn’t about trying harder, this is about how difficult communication is for someone like my daughter.  Just because she can communicate through typing or pointing to words on a stencil board, does not mean it is easy or simple for her.  Just because I am filled with enthusiasm does not mean it isn’t hard work for her.  And so I have to acknowledge how hard this is.

I’ve thought of it as akin to the difficulty I have in learning a foreign language, but I’m not sure that’s really a great analogy.  To me, the idea that she can communicate in any form is just fantastic news and to my thinking why wouldn’t my child want to grab that and run with it?  And then I thought about meditation or exercise or eating foods I know are good for me and how I know my day will go better if I do these things and yet days will go by and I don’t.  Perhaps it is more like that.  Perhaps the importance I place is not the same or maybe importance isn’t even part of the equation for her.

What I’ve noticed is that I feel tremendous fear trying to replicate what I’ve witnessed.  I worry that I will do it wrong, that I will inadvertently hurt her or make a mistake that will cause her upset.  I worry that I will make what is already difficult even more so.  I am also aware of how I do not want to be disappointed.  I do not want to feel those feelings of hope and expectation dashed and the inevitable feelings that then follow, which are often doubt.  Was it all a dream?  Did it really happen?  Could it be it was just that one time?  A kind of burst of brilliance, never to be seen again?

I have had dozens of these moments over the last year.  Dozens of times when I have doubted what I just witnessed.  Dozens of times when I’ve thought – I won’t be able to do this.  I’m too invested, I’m putting too much pressure, I can’t do it, I won’t be able to, I’m not cut out for this kind of work, I don’t have the patience.  But what I see over and over is that I do and I can.  I have to go slowly, I cannot expect to get the results that people who’ve been working with non-speaking Autistic people for decades get.  I have to begin with simple options.  In supported typing they have a “ladder” of communication and new supporters must begin at the bottom rung, not because the person they are supporting isn’t capable, but be cause they are not, not yet.  With Soma’s method it is similar.  One begins with choices, and from there fill-ins and slowly, slowly as one becomes more confident, as trust is built, I will move to increasingly open-ended questions.

All of this requires patience.  Patience with myself, patience with the process, patience with my child.  Patience.  Showing up and being in this moment without expectation.  Patience with my limitations.  Patience with my inexperience.  Patience with my limited thinking that is slowly, slowly expanding to embrace the unknown.

Today Emma is sick and so is home from school.  I asked her what she wanted to discuss – poetry, a story, or Buddhism.  She wrote, “buddhism.”  The irony of her choice is not lost on me…

Buddha copy

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Posted in Autism, Parenting, Rapid Prompting Method

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Changing Our Thinking

Posted on October 1, 2013 by | 25 comments

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week.  She said it was okay for me to do so.  I’m incredibly grateful to my daughter for being so generous with what is personal information.  She has given me her permission, but to leave it at that, would be wrong.  To not acknowledge what this means would be negligent at best.  She is unbelievably generous to allow me to share these things.  I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her…  it is something I not only take very seriously, but need to acknowledge.  To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires.  If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘.  What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad.  She was able to do so without hesitation.  But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter.  Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud.  After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so.  This is a sentence she’d just written, one letter at a time.  A sentence she’d created, yet was not able to read.  It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it.  See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me.   Which isn’t to say that Emma will never be able to do this.  Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written.  But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant.  I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect.  I am saying this because I have seen the evidence.  Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted.  This is, I’m sorry to say, something I am hearing from others.  We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true.  The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong.  This is what must change.

Soma & Em copy

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“Be Nice To Each Other”

Posted on September 30, 2013 by | 46 comments

“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

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My Star: Emma

Posted on September 27, 2013 by | 16 comments

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

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“I Want to Know What God Thinks About Autism”

Posted on September 26, 2013 by | 52 comments

*Emma approved this post before I published it.

Yesterday was our second day working with Soma.  And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post.  It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples.  Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”.  Soma then asked her if she went into a temple what would she pray about.  Emma then wrote, “I want to know what god thinks about autism.”  

I have to interrupt this to say, I am not a believer.  I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me.  God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying.  I don’t need to believe.  Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day.  So there is a fair amount of “god-like” talk going on.  In addition, my mother is a theologian and has taught bible study classes for many decades.  She used to attend a Torah study and I believe does again now.  She is one of the most knowledgable and interesting people I know of to talk to about religion and god.

The point is, Emma has certainly been present to a great many conversations about god, the bible and religion.  But never has she said the word “god” let alone, used the word in a sentence.  And it must be said, we never thought to ask her…   When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe.  We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t.  And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.

Later I asked Emma if she believed in God and she wrote simply, “yes”.

If there is a god, I’d like to know what god thinks about autism, too.  I’m guessing here, but I should think god is embracing and celebrating all neurologies.  After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice.  We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering.  Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.

Em Texas

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Our Amazing Adventure

Posted on September 25, 2013 by | 28 comments

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

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Posted in Autism, communication, Soma Mukhopadhyay

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