Tag Archives: conversation

Intention

Posted on September 9, 2014 by | 14 comments

Yesterday we had an interesting discussion about the word “intention.”  The word was brought up innocently enough.  It was used in the context of asking about a larger project Emma has been working on.  “What does having intention mean to you?” Emma was asked.  

“To have intention is a skill.  To have intention is a hurdle to jump over,” Emma typed.  

I was sitting in the room as this conversation occurred, but was not part of it yet.  I was surprised by Emma’s answer.  I have never thought of intention as a skill or a hurdle.  Instead I’ve always thought of intention as being goal oriented.  Then Emma wrote, “the mind does not always process it correctly.”  

And I realized I have a very different idea of intention.  An idea of what it means to set out to do something and then to do it.  I come at the word from the point of view of someone who has not grappled with intention as daunting.  I have not experienced the word as a series of frustrations, not typically.  Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped.  But this is different from what Emma was talking about.  

“Is intention easier for you while you’re going through it, or later afterward when you are looking back?”  Emma was asked.  

“If I think too much about it the fear is anxiety,” Emma wrote.  

Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean.  He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.

And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language.  As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about.  This is the very essence of privilege.  Having something, being so used to having it that I do not even know I have it…  unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.

“To have intention is a hurdle to jump over.”

intention

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Posted in Autism, Parenting, Speech

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“Talking is Easy, But Saying What I Mean is Hard”

Posted on March 7, 2014 by | 25 comments

Most of us, who have spent our lives using spoken language as a way to socialize and convey what we are thinking, do not ponder what it would be like if we could not do so.  Most of us who are able to speak do not spend time imagining what it would be like if we could speak, but what came out of our mouths did not necessarily match what was in our minds, or wasn’t what we wanted to say, or was taken to mean something else.  For those of us who speak and have little difficulty having a conversation with another it is difficult to imagine what it might be like if we could not speak at all.  We easily tune out our environment allowing us to focus on what is being said by another person.  Asking questions comes naturally, and without thinking we ask for clarification about things we don’t understand or want to know more about.  When we cannot hear something or lose part of a sentence spoken by another, we ask to have the part we didn’t hear repeated, or request that it be said in a different way.  And even so people misunderstand each other all the time.

But what if we could speak only a little and those hard-earned words we finally managed to say were met with confusion, irritation, even anger and led to misunderstandings.  Or what if speaking words was so difficult it was easier to utter sentences constructed by others, sentences that held special meaning to us because it reminded us of a happy or sad or anxious or frightening time. Whenever one of those emotions surfaced, we would blurt out that sentence from the past, because it so beautifully captured what we were feeling now.  Maybe though, other people who did not understand or know the meaning they held for us, took them to mean something entirely different.

A blogger friend, E. of the fabulous blog The Third Glance wrote an amazing piece, Words, a couple of years ago about trying to participate in a conversation with a group of friends.  I’ve never forgotten that post, it was one of a number of posts that radically changed my thinking.  You can read it by clicking ‘here‘.  She describes wanting to keep up with a conversation that a group of people she knows is having in a busy place, while trying to filter out the noise that comes with being in a public place, the stress of trying to figure out when it would be appropriate to interject a comment, the pressure of knowing some sort of response is expected of her, and not being successful.

Yesterday Emma wrote, “Talking is easy, but saying what I mean is hard.”  I understand that when she wrote that, she meant it literally.  Emma “has language” yet cannot carry on a spoken conversation.  Emma cannot answer with spoken words questions like, “What did you do in school today?”  Or “What did you think of that movie?”  Or “Which student in your class do you like best?”  Or “What’s your favorite subject?”  Or even “What are the names of the other students in your class?” or “Where do we go to borrow books?”  As a result all those so-called reading comprehension questions are met with silence, or with words that seem to have nothing to do with the question asked.

The other person then draws the conclusion that Emma does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words.  This is the same girl who wrote, ““I can’t talk the way I think.  Where is the label for that?”  The same person who eloquently answered questions about functioning labels, stimming and autism, ‘here‘, ‘here‘, and ‘here‘.

“Talking is easy, but saying what I mean is hard.”

Emma Playing the "My Mouth is Glued Shut" Game

Emma Playing the “My Mouth is Glued Shut” Game

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Posted in Autism, communication, language

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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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Posted in Autism, communication, friendship

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More Insights From Emma

Posted on December 27, 2013 by | 20 comments

My entire routine has been so thoroughly disrupted these past three weeks that this blog has suffered the consequences.  There’s simply too much going on, not in a bad way necessarily, but more than I have been able to keep up with.  But today…   Today both kids are out skiing and I have a few hours to write.

Emma has been writing a great deal.  In fact Emma wrote three stories as Christmas presents to her granma, her Uncle and Aunt and her dad.  Each one is beautiful and poignant and kind of over the top amazing in its complexity and layered meaning.  I transcribed the one for her granma ‘here‘.  In the story to her Uncle and Aunt, the final sentence was, “No words need to be used to hear love.”  Think about that for a second…  This kind of insight shows a level of sophistication and poetic understanding of the world few adults have managed to appreciate, let alone, express.   Emma is eleven years old.

In the story for her dad she wrote about a  daughter who, “Daily she tried to communicate her love for her family, but her words came out of her mouth wrong.  In day after day conversation she was misunderstood.  Finally she began to write on a stencil board and the words came out right.”  I am quoting this here because this is exactly the sort of thing so many of us get hung up on.  How many times have we seen or heard parents talk about their distress because their child is not able to say those three words, “I love you”?  How many times did I once, not so long ago, lament that my child had not ever said those words without being prompted to?  How often did I wonder and question her love?  And now…  now I wonder why and how could I have ever questioned those feelings?  How was it possible that I ever doubted her?  I say this lovingly and with tremendous compassion for all who have ever wondered this about their child.  We are being given incorrect information about autism and our children.  But I wonder if I would be so certain if my daughter were not writing and telling me the things that she is.

As I’ve stated before, writing is hard work for Emma and even though all of us, who receive her words, feel incredibly grateful to read anything she writes, it is difficult for Emma to express herself even in writing.  I say this as much as a reminder to myself as to inform those who may not fully appreciate how hard it is for her.  Often, when people hear that Emma is writing, and writing some pretty profound insights about the world, herself and autism, they will say, “but why not just give her an iPad or let her write on a computer?”  And then I must try to find the best words to explain.  It isn’t that easy or that simple, if it were, she would have begun writing a long time ago.

I’ve described before the process ‘here‘ and ‘here‘ that Emma uses to write, one letter pointed to at a time, on a stencil board, while a trusted person transcribes each letter or word one by one.  I have worked with Emma since the end of September almost daily and am now one of the people she can and does write with, to express herself.  She is incredibly generous in her willingness to allow me to quote her and almost always gives me permission to quote her on this blog, something I am doing more and more frequently!

This morning I talked to her about skiing with a ski pro, asking whether she’d like me to ski too.  She told me she preferred that I did not come too, and when I asked what, if anything, she wanted me to tell the ski instructor, she wrote about how she wanted to eat lunch early and then wrote, “Have to understand my mind talks heavy thoughts, but my mouth talks silliness.”   I asked her what she advised and she wrote, “Try to be patient and do not over rate talking to each other.”

A message we talkers would do well to appreciate and try our best to implement.

Emma’s Eyes ~ A Self Portrait

Em

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Posted in Autism, Parenting, RPM

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