Tag Archives: RPM

Asking Questions

Posted on February 12, 2014 by | 24 comments

The other day during our session about the Middle East (this post is not about the Middle East) I mentioned to Emma that I’d recently read a memoir, I am Malala written by Malala Yousafzai.  Malala is Pakistani and was shot by the Taliban when she was just 15 years old because she wanted to be able to go to school and have an education.   Emma then wrote, “Was she alive after they shot her?”

It was all I could do not to jump up and down with exuberant glee that Emma wrote me this question.  It wasn’t the specifics of the question that made me so excited, it was that it was a question at all.  You see, Emma has never asked me a question like this before.  This is the sort of question she regularly asks Soma, but not me.  In fact, I just wrote about exactly this, a few weeks ago while Emma and I were visiting Soma.  You can read that post ‘here‘.  The question Emma asked is the sort of question I’ve barely dared hope for.  It is the kind of question most people take completely for granted.  Asking a question like this is the beginning of a conversation.  It requires a different kind of thought process than answering does.  It requires initiating a line of thinking.  It is the beginning of a back and forth that we talkers do not often contemplate, but do without thinking.

I know Emma has many questions just like this one, but she is not able to easily communicate them.  This is different from in the past when I was caught in that great abyss of believing that because she didn’t ask questions, she wasn’t interested.  That old way of thinking was so detrimental to her and to our relationship.  The belief that things were not being expressed because they did not exist was so destructive, not just to Emma, her self esteem and growth, but to all of our interactions.  Instead, this was a moment of celebration.  A moment when I just sat in utter admiration of my daughter.

Presuming competence.   Those two words hold so much meaning within them.  Every day I make tiny inroads, little steps forward in presuming competence, going just a little further in my ability to stretch my thinking so that I am embracing this concept just a bit more.  And as I do my daughter is showing me over and over that I have still farther to go.  This process is one of such joy, wonder and unbridled excitement.  My husband, Richard and I discuss this all the time.  How fortunate are we that we have the opportunity to expand our awareness on a daily basis?  How exciting is it that we are in a process of constantly re-evaluating what we think we know?

“Was she alive after they shot her?” Emma asked.

“Yes!  She lived and now has written this book,” I answered, showing her the cover.  “Should we read it together?”

“Yes,” Emma replied.

Em with her string!

Em with her string!

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Posted in Autism, communication, Parenting

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“Just Being Funny”

Posted on February 6, 2014 by | 20 comments

Last week Soma and Emma discussed different proverbs.  Soma explained that one of the proverbs was about how a new person can be very enthusiastic upon getting a new job, eager to prove their worth they do a great deal, but as time goes on they lose some of their enthusiasm and do not do as much.  Emma then wrote, “It is like a new husband.”

When Soma asked her to say more, Emma wrote, “Just being funny.”

And she was.  Really funny.  In fact, I burst out laughing.   One of the great things about someone who says the unexpected is that it often is very funny, and that she also intended to be so, makes it all the more joyful.  (There is nothing more upsetting and hurtful to the other person than laughing at something that strikes you as funny, only to realize the person speaking did not intend or mean to be funny.)

I cannot anticipate what Emma will write.  The way she phrases ideas and thoughts, even questions are unexpected.  I am biased, I know, but I see her way with words as one of her many, many talents.  The beautiful and unexpected way in which she will phrase a thought or express a feeling fills me with emotion. I am in eager anticipation and gratitude for every word she writes.  I sit and watch her and am mesmerized.  There are few things I enjoy doing as much, truthfully.

At the moment Emma’s two favorite songs are Clint Eastwood by the group Gorillaz and Cage the Elephant’s Ain’t No Rest For the Wicked.  Like me, when Emma likes a song she will play it over and over and over.  When I was a teenager I wore out record albums (yup, that’s how old I am) from playing the same favored song repeatedly, causing the album to get scratched from my insistence that only the one or two songs be played and not the record in its entirety.  Dancing to those favorite songs is an added bonus.  Emma loves to dance and so do I, something my husband loves doing as well.  Listening to music requires no speech; no words need to be exchanged.  Given how hard Emma must work to write her thoughts, it is nice to do something we all love, that isn’t hard work.

Yesterday Emma and I were discussing death, something Emma speaks about regularly in repetitious utterances about various pets and people who have died.  We have talked about death before, but this time Emma wrote a sentence that I couldn’t make sense of.  It was at the end of a 40 minute session, so I figured she was tired and we’d come back to it later.  Since our time was up, I left the sheet of paper with Emma’s sentence on it, on the table.  This morning, just before I left for work, I reread the sentence.

“Hysterical rant on death is assuring story, but does nothing to understand reality of story.”

And I began to wonder whether her spoken phrases, “Bertie died, Bertie has to be careful.  Yeah, Bertie got old.  Bertie lay down and went to sleep.  Bertie died…” about my very old cat who was seventeen when he finally died, is a kind of calming self talk.  Perhaps a way to make the unknown less frightening and yet she still knows that even in trying to soothe her fears, the repetitive talk does nothing to help her understand.

So this afternoon, I will ask her and afterward we will listen to Gorillaz and Cage the Elephant and dance.

Dancing ~ 2012

Dancing ~ 2012

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“Why is my Mind Autistic and Yours is Not?”

Posted on February 4, 2014 by | 22 comments

Yesterday Emma wrote, “Why is my mind autistic and yours is not?”

That sentence took over two minutes for her to write.  I say this as a factual statement so that people reading this have a better understanding of the enormous effort and energy it takes for my daughter to communicate.  If it took everyone a few minutes to communicate a single sentence, perhaps we would be more thoughtful about what we said and wrote.  Two minutes.  With someone like Soma, Emma is able to write much more quickly, but I am fairly new to this (I’ve been working with Emma on an alphabet board on a daily basis since the end of September) and so with me, it takes longer.  With someone else it may take even longer still, or she may not be able to write more than a single word.   But the more salient point is, that sentence is gold, and worth every second it takes for her to point to one letter at a time to create words and then whole sentences.

Until we found this way of communicating, we were left guessing about Emma’s likes and dislikes, what interested her, what she was curious about.  And while there were a great many things we knew or believed we knew without her telling us, there was also a great deal more that we did not know or understand.  For example, I was astonished to learn last week that Emma was curious about Africa and wanted to know why so many of it’s inhabitants are poor.  Later I asked her if she’d like me to read about an African photojournalist, Echwalu, whom I love and whose blog I follow, Echwalu Photography .  She said she was interested.  We have since begun subscribing to National Geographic and I am now reading articles from the New York Times to her.

“Why is my mind autistic and yours is not?”

So I did my best to explain that no one actually knows the answer to that question.  I explained that most people believe genetics plays a role and that though I am not autistic, I do share a great many “autistic-like” traits.  I went on to explain that there is more about autism that is unknown than there is known and then our session time was up.  Emma went to listen to music while I thought more about her question, and resolved to read to her the Markram’s, Intense World Theory.  I thought about how our brains differ, but also how much they are alike.

I thought about how relatively easy it is for me to communicate and how I take most of my communication for granted.  In fact there is so much I take for granted.  I thought about how easy some things are for Emma, things that I am not able to do, like singing on key, being able to remember a melody and imitate it note for note.  Her ability to absorb knowledge without having been taught, like multiplication, division, vocabulary words, to name just a few.

This idea that Autism is a massive list of deficits needs to change.  The truth is we, non Autistics know almost nothing about Autism and what it means to be Autistic.  In fact, the human brain is constantly astonishing neuroscientists.  To say we understand or know without a doubt what any one of us is able to do is to underestimate, not just ourselves, but everyone else too.

Emma ~ 2012

Emma ~ 2012

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Conversing With Emma

Posted on February 3, 2014 by | 27 comments

I asked Emma if I could write about a conversation she had with Soma last week.  She told me I could.

Emma told Soma she wanted to open a day care center.  When Soma asked her what she’d call it, Emma wrote, “Emma’s Hope Care.”  Soma then asked what the philosophy of the center would be and Emma wrote, “No Autistic child left behind.”  And then a little later Emma wrote, “early education” and “no behavior management.”  Soma asked Emma where this center would be located, Emma wrote that she intended to have several, but that the headquarters would be in Chicago.  I smiled when she wrote that as my brother and his wife live nearby as does our friend Ibby, or as Emma calls her, “Ibby from Ibbia”.  Emma also said there would be a center in New York.

This was an easy back and forth conversation, with Soma giving her thoughts about things then asking Emma for her thoughts or Emma volunteering her opinion without being asked. Emma pointed to letters on a laminated alphabet board while Soma spoke, and on it went.  It was an example of something most speaking people take for granted.  We do not think twice about exchanging an idea with another, asking questions about things we don’t understand, listening to the other person, formulating an opinion, discussing, perhaps disagreeing, but in the end each person coming away with more information than they had before entering into the conversation.

I was fascinated to hear that my daughter knew about the “no child left behind” bill, passed by the United States Senate in June of 2001 and signed into law in January, 2002.  I also wondered if her comment, “No Autistic child left behind”,  was said with a touch of irony and humor, perhaps even sarcasm, as the current situation in so many special education schools in New York City, both public and private, are leaving a great many Autistic children behind.  In fact children, like my daughter, are regularly put into classrooms where a high school diploma is not a given, much less a goal.  Not only has Emma told me she wants to get a high school diploma, but she intends to go to college as well.

But what I loved most about what Emma wrote was her obvious compassion for others and her desire to do good.  Last fall she wrote about wanting to visit “old people” and then added, or “people in a cancer hospital.”  Funny how when you listen and watch what Autistic people are saying and doing, it is not in keeping with what so many non autistic “professionals” are saying about them.

A completely unrelated photograph of Emma holding Teddy.

Emma holding Teddy

Emma holding Teddy

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Henry & Emma’s Story

Posted on January 31, 2014 by | 7 comments

Yesterday Emma and I spent time with our friends Lauri and her son Henry.   Lauri has a wonderful blog, Ollibean, which is a model of  inclusion and what that really means.  Recent posts include Judy Endow’s How to Figure Out if an Autistic Needs Fixing, Amy Sequenzia’s Walk in my Shoes, and Henry Frost’s All the People Saw my Intelligence.

About a year and a half ago I interviewed Henry regarding his wish to be allowed to go to his local school.  Because Henry cannot speak and is Autistic, he was denied that right.  That interview was published on The Huffington Post ‘here‘.  And a follow-up post ‘here‘ because the piece went viral.  I also wrote about staying with Lauri and her family last spring ‘here‘, which was also when Emma and Henry became friends.

Henry and Emma wrote this story together, taking turns writing a sentence by pointing to letters on an alphabet board.  Henry is “H” and Emma is “E”.  (I know … that’s probably pretty obvious…)  Afterwards Henry and Emma gave me permission to publish their story here.

H:  Once a man went to the king.

E:  He had a complaint against his horse.

H:  His horse would not carry him any more.

E:  His horse wanted five dollars each ride.

H:  The king asked him to sell the horse.

E:  The horse said it is not a slave.

H:  The king asked the horse its price.

E:  The horse said it needs a million dollars.

H:  Finally the king gave two options to the horse.

E:  First was – fight a lion.

H:  Second is –  serve this man.

E:  Choose between the two.

H:  Question is – what will he choose?

E:  The End

Henry & Emma ~ January 30, 2014

Henry & Emma ~ January 30, 2014

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Social Expectations

Posted on January 30, 2014 by | 24 comments

Yesterday there was some discussion about accepting and rejecting social rules.  Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her.  When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session.  I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.

1.  “Giving eye contact when I don’t want to.”

2. “Being expected to answer verbally.”

3. “Being happy when I don’t feel up to it.”

4. “Keeping my body still”

5. “Trying to be Temple Grandin”

When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?”  Emma wrote, “Don’t you?”

So here’s my question to all of you…  if you could change a societal expectation, what would it be?

Oh, and this is the eagle Emma drew after her last session…

Emma's Eagle ~ January 29th, 2014

Emma’s Eagle ~ January 29th, 2014

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Posted in Autism, RPM, Soma Mukhopadhyay

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Discrimination

Posted on January 23, 2014 by | 35 comments

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.)   B. encouraged her to write more, asking her what she suggested.  Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction.  I remember the shame I felt.  I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school.   There was shame then too.  But stares like I’m garbage?  No.  I don’t know what that’s like and yet, my twelve-year-old daughter does.  Twelve years old.  Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday.  It wasn’t like she had to stop and think about her answer.  She didn’t pause before pointing to the letter “g”.

“take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King.  She had spoken of the civil rights movement and quoted a few things Martin Luther King said.  Emma immediately wrote about autism.  No hesitation there.  I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well.  The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

Emma ~ 2010

Emma ~ 2010

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Posted in Autism, human rights, prejudice

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“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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Emma’s “Folk Tale”

Posted on January 17, 2014 by | 50 comments

*Emma worked on this story for a week and it took many 45 minute sessions to complete.

“Once upon a time there was a duck and she bought a gorgeous pair of shoes.  She could not force her webbed feet into the lovely shoes, so she fell into a terrible depression.

“Oh what is the matter with me?” she cried.

“Her once beautiful feet now disgusted her.  The new shoes languished in her closet.  Golden hopes for her acting debut were dashed.  Without her new shoes she believed she would not be as highly regarded as she would be while wearing them.  Delightful she once was, but now no longer.

“Dawn arose like a spring crocus and she decided matters could only improve if only her feet were dainty.  Seeking the advice of an aged, old, spotted owl, she wondered if her feet could be changed.

“The ancient bird asked, “Have you always hated your feet this way?”

“No,” she said, “I have always enjoyed my wonderfully webbed feet.”

“Then, ” asked the sage, “why do you dislike them so, now?”

“Because,” she replied, “my new shoes do not fit and they are so pretty.  Could they be changed so I may wear them?”

“Yes.” Owl smiled.

Relieved to be in the company of one so wise, Duck had seen the failure of her ways.  It was not her feet needing amendment, it was her perception.

Duck's Lovely Webbed Feet

Duck’s Lovely Webbed Feet

Today is Emma’s birthday.  She turns 12.  Happy Birthday to my beautiful girl!!

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Emma’s Letter to Her Teachers

Posted on January 9, 2014 by | 39 comments

This is a letter Emma wrote yesterday to her teachers.

Dear ____________________,

I would like to teach you how to use a stencil board so that I can show you how much I know and so we can discuss what you are teaching me in class.

I want to learn both syntax and style of diverse writers.  Poetry and prose both interest me.  I love to write stories and welcome the opportunity to do so.

You try to teach me, but not in a way that I can learn.  Try to learn what my mother has learned from Soma and change how you think about autism.

Addition and subtraction are fun, but I have been doing that for many years and numbers are easy for me to understand.  It is boring to do the same thing over and over all the time.

I do not like school and I wish I could go to a regular school where I was treated like other kids.

Sincerely,

Emma

After Emma wrote this letter I sat with my husband Richard, clutching the three pages it took to contain these words that Emma wrote, pointing to one letter at a time on her laminated letter board.  I asked Emma if I had her permission to read her words aloud to her dad, she nodded yes and then said out loud, “on the blog.”

Education for our kids, whatever their neurology, is something every parent worries about.  Our schools are buckling under the weight of mismanagement, bureaucracy, out dated and irrelevant standardized test requirements, politics, and the diverse needs of our children, make any one-size-fits-all method of teaching impossible.

I don’t have any answers, but I intend to get some.

To anyone who has successfully gotten their non-speaking child (or a child like Emma who is able to speak, but says things they do not intend) into a “regular” school, please contact me and let me know how you did it.  Does your child have a one-on-one aide?  Did you train the aide yourself?  Do you do RPM?  Did the school work with you?  If they didn’t, what did you do instead?  Any and all experiences are welcome.  You can also contact me by email:  emmashopeblog@gmail.com.

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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The Gift of Emma

Posted on December 30, 2013 by | 28 comments

In the days leading up to Christmas, Ariane excitedly told me that Emma had written, “I want to write a story about Daddy.” Ariane said it was going to be my Christmas present. Obviously, I was incredibly excited as well. But on the following day Ariane came to me after her writing session with Emma and said:

“This story is going to make you cry.”

On Christmas morning, when I untied the bow around the paper Ariane had rolled up, I braced myself. The story was indeed sad, yet hopeful, wonderful and important, like all of Emma’s stories. It was also very private, and so, days later, I still hadn’t asked Emma if I could/should publish it. Ariane asked her today and Emma said she didn’t want the entire story published, but it was okay to post this section:

“One day there was a man and woman who fell in love.  They eventually had two children, one son and one daughter.  They were very happy.  The daughter was distinctly different, but meant well.  She did not understand many of the ways of her family.

“Her father told her that she was kind and smart.  She ran away because no one believed her to be clever, even though her parents did.  Her father wanted many to realize how smart she really was.  So he told others “do not treat my daughter like a baby.”  People did not listen.

“His daughter was sad, but her parents believed in her, and that mattered more.  She was the luckiest girl in the world.”

I’m so glad Emma feels this way. I wish she were even “luckier” and we had known all these things about her many years ago. I do truly believe that I am the luckiest dad in the world. Like Emma, I feel incredibly sad that I underestimated Emma for so long, that I was so utterly clueless to this entirely different aspect of her, that I could not see and appreciate. But I feel so blessed today to hear and see all these amazing parts of Emma I had never understood.

“Better late than never” is an apt phrase to convey both the joy and sorrow I feel, now that I’m aware of what is certainly only a small fraction of Emma’s talents, feelings, insights, intelligence and her poetic soul. It is also an apt phrase to convey the necessity of getting this message out to the world, something that Emma and Ariane, and so many other autistic people and their families and friends have been struggling so hard to do for so long, in the face of an Everest-sized mountain of misinformation from so-called “autism experts.” The most heinous sub(human) class of these is the “debunking” posse, who seem to spend every waking moment of their lives trying to discredit any assisted communication methods for autistic people. Yet no matter how hard they try, and they do try really hard–they will never succeed in keeping these blindingly brilliant autistic minds imprisoned by their willful and malicious ignorance.

The three best gifts I’ve ever been blessed with are my wife Ariane (who I met at a party on Christmas day 15 years ago!), and my wonderful children, Nicholas (age 13), and Emma (who turns 12 in January).

Emma is such a wonderful gift in so many ways. I could write another (even longer) post just listing all the amazing blessings she has brought to me and our family. But I’ll simply conclude by repeating one of the sections of her story that Emma agreed to publish, because it’s the kind of “better late than never” message so many more people need to hear:

“Her father wanted many to realize how smart she really was.  So he told others ‘do not treat my daughter like a baby.’  People did not listen.”

Maybe they are listening now, Emma. Maybe more and more people will hear your voice and the voices of your autistic brothers and sisters. Maybe all these people will someday be lucky enough to experience the gift of Emma.

Emma showing off her new red beret and her new art work (a collage of relatives).

Emma showing off her new red beret and her new art work (a collage of relatives).

 

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Posted in Autism, communication, Parenting

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Emma’s Gift to her Granma

Posted on December 25, 2013 by | 19 comments

I asked Emma what she wanted to give to her grandma for Christmas this year.  Emma wrote, “I will give to Granma a story about dogs who go to work instead of playing.”

Here is her story, reprinted here with both Emma’s and her granma’s permission.

A Folk Story For Granma ~ By Emma

“Once there were many dogs who went to work.  They worked part of the year in the fields, yet their masters wished they would work all the time.  So one day they organized a strike and their owners got very angry.  They told their owners they would not involve them in their decisions about how they spend their time.  Their owners said they had to work or they would not be fed.

“One day everyone went to work.  Sounds were too loud.  Every dog began to whimper.  The noise was so dreadful, the owners told their dogs to take the day off.  Noise is everyone’s enemy, but it is everyone’s  friend too.

“Today, dogs do not have to work in fields.  They are free to play.

“The End”

Emma chose this image to accompany her story.

Group_of_Gun_Dogs_from_1915

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Posted in Autism, communication, Rapid Prompting Method

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Silence and the Words That Fill it

Posted on December 24, 2013 by | 26 comments

Emma has been writing stories to give as Christmas presents to a couple of special people in her life.  It is an exhausting process for her and one that takes a great deal of time.  As the person who is witnessing and encouraging her to keep going, it is always revelatory.  Her gift to me is her ongoing commitment to keep showing up for the hard work that is required of her to communicate in ways most people consider most important, with words.   However as I sit with her I am increasingly aware of how much, those of us who are talkers, often miss.   Because of my daughter, I have a heightened appreciation for the beauty of silence words seek to fill.

I cannot quote anything from the amazing stories Emma has written for family members, as they are gifts to be given tonight and tomorrow.  But I can quote this, which Em wrote in response to my question – “Tell me one thing about Christmas?”

Emma wrote, “Christmas means love and family.”  (This, from an eleven year old.)

There is nothing more to say.

Merry Christmas to those of you who celebrate and for everyone else, may you experience love and family, in whatever way those words may mean for you this holiday season.

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Posted in Autism, Parenting, Rapid Prompting Method

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“Music is Stars for your Ears”

Posted on December 19, 2013 by | 28 comments

Profound. Poetic. Always unexpected. When Emma writes (in this case she was typing), she is able to express herself in a way that she isn’t able to with speech yet. But what she has to say is always (to me at least) profound, poetic and unexpected.

Take that above line for example. As she slowly typed, letter by letter and got to this point: “Music is star…” I wondered, where is she going with this? And no matter how many times I witness her write, I never cease to marvel at what she ends up saying.

It’s Richard here. Ariane has been traveling for the last two weeks doing her Holiday Trunk Show in Chicago and for the last day today in Aspen. She hates it. She is an incredibly talented, award-winning jewelry designer. Just take a look here and see for yourself. She began designing jewelry after some prodding from me because she had become so obsessed with autism and (many years ago) with finding a cure, that she was stressed out to the snapping point.

Ariane went to school for fashion design with a bunch of today’s top name luxury designers–an exclusive class at an exclusive school. But she hated the fashion world. I suggested that she channel all that talent and creativity in a different direction, so she wasn’t spending every waking moment of her life reading books about autism and searching the Internet for the latest studies and therapies and anything else under the sun she could discover about autism. That inexhaustible search led her to discover the blogs of autistic adults, films like Wretches and Jabberers, Supported Typing, Soma’s RPM, the Intense World Theory, and a hundred other things that have completely transformed our family in the most wonderful way possible. And by sharing her/our journey on this blog, I believe she is making the world a better place, day by day.

Ariane would never make such claims about herself. I’m happy to. She invited me to write a guest blog today while she is doing her trunk show. I’m certain she thought it would be all about Emma, but “heh heh” as Ibby would say.

If Ariane had a partner that handled the business side and left her free to simply design jewelry, she’d probably still be having fun with it. But these trunk shows are definitely a drag. I know for certain that she would much rather spend the day writing a blog post, replying to comments, working on one of the books she’s writing about her/our journey, reading more books and articles, chatting with her friends, getting a manicure–basically anything other than sitting around in a hotel room, waiting/hoping for people to stop in and buy some of her amazing designs so she doesn’t hate being there even more. So if you’re in Aspen, stop in and say “hi!” Oh, and bring your wallet. If you’re not in Aspen and love jewelry, or just love Ariane, send her a note, or a message or call, or Skype–or buy some jewelry after browsing on her website. She would never say such things here, or anywhere but once again “heh heh.”  I, for better or worse, am and shall always be: The King of Bluntness.

Now, after that shameless plug, let me talk about the session I had with Emma and “B”, who helps with Emma’s written communication, using Soma’s RPM method. Yesterday was a milestone because Emma used a keyboard throughout the entire 45 minute session, instead of the stencil board or letter board she usually uses. This was clearly a stressful adjustment for Emma, but she soldiered on bravely, and as usual, wrote some amazing things. Profound. Poetic. Always unexpected.

Rather than editorialize, I’m going to relate the entire session, using B: and E: for Emma. Some of B’s statements are paraphrased. All of Emma’s responses are exactly what she wrote, because the keyboard was connected to an iPad and it was all recorded.

B: What history topics are you interested in?

E: music, history, country, the world, the playground

B: Tell me something about music.

E: Music is stars for your ears.

B: (B gives a lesson about the origin of blues music with slavery) What kind of music are we talking about?

E: blues

B: Tell me something about our country in the 19th century as opposed to the 20th century.

E: there were slaves

B: What can you say about freedom?

E: less freedom when you are someones slave.

B: What do you think singing (the blues) did for them (slaves)?

E: how about it helped the crops grow.

(There was an interesting blurt Emma did here: “You left him there to die!” from her favorite movie Two-Headed Shark Attack. It speaks to me of injustice, self-interest and the horrifying results)

B and Emma then did some “Call and Response” blues-style singing together.

B:  What would you say about that?

E: when you call your friend they should not ignore you.

B: Can you come up with a call and response song?

E: I like to eat cake

the sweet is so nice

They sang these verses together a few times (ultra-sweet!).

B: Where in the country does the blues come from?

E: south

B: Do you have something to say about this?

E: there is fun music in the north also.

B: (B plays a video of BB King singing “Stormy Monday”) What do you think about that?

E: stormy tuesday it was. (the previous day was Tuesday and it was stormy).

B: (B tells a story about a teenage boy who was lost and later found by a homeless man who called the police and contacted his mother. The mom was very grateful and rewarded him.)

B: What did I say about the man?

E: homeless.

B: The mom was grateful. Why?

E: he found the son.

B: Years later there was a news article about the man whose name was Leo. Another man named Patrick used to pass Leo every day on the way to work. They began chatting. One day Patrick gave Leo an offer and he had two choices:

1. $100

2. A laptop, lessons everyday for an hour in computer coding.

(Leo took door #2, and in the article Leo coded an app later.)

B: What was one of the options?

E:  money

B: What do you think about the story of Leo getting lessons and coding the app?

E: he needed to get rewarded.

B: Any message for the world about anything?

E: hearing my response to your call is like being at a fun amusement park.

Image

And being present for all of this was like being in a fun amusement park too.

“Music is Stars for the Ears.”

Yes, it certainly is Emma. It certainly is.

Happy holidays to all! See you Saturday Ariane. Emma and Nic are counting the days and so am I!

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