Tag Archives: Parenting

Emma Presents At CoNGo With Ari Ne’eman

Posted on April 3, 2014 by | 22 comments

Tuesday night I received a message from Jess of the blog  – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN.  She asked me if I’d be able to step in if she still felt awful Wednesday morning.  I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.

Fade to the following day.

Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans.  So we wait to hear from him and I go about my day, trying as best I can to not think about it.

Three hours before the event I was able to check my email and see that I’d been given the green light.  I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea.  Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?”  An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.

We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn.  After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance.  Emma wrote, “I am aware of many things, and so are you.  Acceptance takes more dedication.”  I paused and then turned to Emma and said, “Do you have anything else you’d like to add?”  I held her stencil board and gave her a pencil.  Emma wrote, saying each letter as it was pointed to, “Yes.  Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”

Applause.

I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded.  And because we thought the whole thing was being recorded we didn’t bother taking any still shots either.  So other than a few photographs of Ari, we got nothing.  (Insert sad emoticon.)

Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t.  And if I’m right then it was worth every second.

PS  Jess, I’m hoping you’re feeling better.

Ari Ne'eman

Ari Ne’eman

 

 

 

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Posted in Autism, Autism Acceptance, Autistic Role Models

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Awareness Sucks

Posted on April 2, 2014 by | 21 comments

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”.  I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful.  But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me.  After all today is World Autism Awareness Day.

A year ago I wrote a  post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years.  The next day I wrote  – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“.  After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  And after all that I just felt cranky.  Seriously.  Just cranky.

I don’t look forward to April the way I once did.  April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter.   What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible.  I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now).  More fear. More anger.  More calls for action.  More listening to people who don’t know what they’re talking about.  More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

How’s that for a little awareness?

Emma ~ 2010

Emma ~ 2010

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Posted in Autism, Autism "Awareness", mother/daughter

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Experiencing Without Words

Posted on March 31, 2014 by | 12 comments

Over the weekend we played a story telling game.  The round robin story telling was an idea Emma came up with during an RPM session she had a few weeks ago and it seemed like a great idea for a rainy Sunday morning.  (Unfortunately, I didn’t get everyone’s permission to print our story here.)  Suffice it to say, it involved rain, a family made up of two parents, a girl, a boy, and a tornado carrying a herd of walrus.

Emma began the story with one sentence, then each person added a sentence and we continued going around in a circle.  Emma spelled out her sentences by pointing to letters on her laminated letter board, my husband and son said their sentences out loud while I transcribed what they said, but when it was my turn, I found it very difficult to think of what to add out loud, and so I wrote my sentence down first and then read it to the group.

After each person’s contribution there was much laughter and ad-libbing.  At one point Richard, who, it must be said, couldn’t help himself, constructed perhaps the longest, and wonderfully, creative run-on sentence every spoken.  He did look a bit sheepish afterwards, but the story moved along until it was Emma’s turn again, where upon she said, “All done.  No.  You have to work!”  Her comment reminded me that for Emma this “game” that was intended as fun, was “work” for her.  As no one else was viewing it as work we stopped after the fourth go around, at which point Emma raced off.

I think a great deal about how hard it is for Emma to communicate, whether that is through spoken language or writing; they are both hard.  This surprises many people who assume, as did I, at least in the beginning, that someone who cannot rely on spoken language to communicate, would be more than a little relieved to finally find a way to express themselves by writing instead.  However Emma has told me on several occasions that while she is relieved that people finally can understand her when she writes, it is also very, very difficult for her.

Emma recently described writing as, “It’s too hard work,” but it’s easier for the rest of us, particularly as it tends to be more accurate of her thinking than her spoken language.  Not long ago Emma wrote, “I can’t talk the way I think.”   But it would be a mistake to then assume writing is easy or that she eagerly does it.  And I was reminded of all of this when it was my turn to come up with a sentence for the story.  I couldn’t come up with a sentence through spoken language, but had to write it down first.  What if everyone had insisted that I say my sentence out loud, what if someone had said that it was against the rules to write the sentence down first?

I can tell you it would have been much more difficult for me, though it still would have been fun.  But what if I experienced the world in other ways and not with words?  What if my experience of people and things was not through pictures, words or anything that can even be described with words?  Wouldn’t both written and spoken language through the use of words be equally difficult for me?  What if my experience of the world was completely different and having to translate this experience into words was actually impossible?  What if so much was lost in the translation that it no longer represented my experience?  What then?

Em with her string

Em with her string

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Posted in Autism, communication, Parenting

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Seeing Others Write To Communicate

Posted on March 28, 2014 by | 12 comments

I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing.  There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible.   So I’ve compiled a few Youtube videos of different people who communicate the way Emma does.  A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard.  This is our goal and what Emma is working toward.   For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.

The first video is of Ido who now types independently on a keyboard.  Ido’s blog is Ido in Autismland where, in a recent post, A Challenge to Autism Professionals, he wrote:

“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”

At the end of this terrific post he writes:

“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”

Ido wrote a book with the same title as his blog – Ido in Autismland.  I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’   It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.

This second Youtube video is of a boy who writes a letter to his church.

Jackie Dorhurst is a speech/language pathologist shown here working with Gavin.  Jackie has an organization called RPM+ located in Wisconsin.

This next video is of my friend Sue Finnes’s son Chris.  Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.

And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.

This post was inspired by a comment from Ari,  who has a wonderful blog, Pixie Perceptions.  You are not alone Ari.  Doing all I can to make sure others realize this…

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Posted in Autism, Autistic Blogs, Autistic Role Models

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Talking By Writing

Posted on March 27, 2014 by | 25 comments

*Emma gave me permission to write about the following…*

Every Tuesday afternoon I go to Emma’s school where Emma and I do a sample lesson, or Emma answers questions from staff or sometimes someone wants to share what they worked on with her and what her answer was.  As Emma “talks” by pointing with a pencil to the letters on a laminated letter board she twirls her string, and often, while she is “talking” by writing, she is also talking, as she describes it, “with my mouth” at the same time.  When I mentioned this to her at our last training session she smiled and wrote, “It is hard for non autistic people to multitask as well as I can.”  Which was one of those frequent – oh-my-gosh-Emma-you-are-so-fabulous – moments, because, really, not only does she have a wickedly wonderful sense of humor, but whoa(!) how right she is!

Later Emma wrote in answer to the question, “Is it problematic for you to switch from the letter board to a qwerty board, she wrote, “No.  It’s not a problem.  Is it hard for you?”  I was so taken aback by her response, because, honestly I had not ever considered that it isn’t a problem for me, so why did I assume it would be for her?  And yet, I have.   This was yet another reminder to me of how I presume competence as best I can with all that I know and yet, am humbled by constant little nudges urging me to go farther.  How beautiful is that?  Seriously?!

When I began witnessing people who use spoken language like my daughter does or who do not speak at all, but write, often poetically, often beautifully, I was astonished.  It was unlike anything I had ever seen before.  It’s been close to two years now since that first time I witnessed in real life someone communicating this way.  At first I was so incredulous, all I could do was watch and try to take in what I was witnessing.  After many encounters, repeated by so many people, men, women, teenagers, boys and girls as young as seven or eight I went from shocked amazement to a more calm feeling of  excitement, but even now, having spent nearly every day watching my daughter write this way, I often still feel like I’m in a dream.   It is as though I have been allowed into another dimension, and it is more beautiful than anything I ever believed possible.

"Talking" with the letter board

“Talking” to Soma using the letter board

 

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Posted in Autism, communication, Parenting

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On Being Judgmental

Posted on March 26, 2014 by | 61 comments

The other day a parent felt I was being judgmental because of my Demanding Speech post.  I felt terrible that was her take away from the post, but I also understood why she felt that way.  One walks a fine line when criticizing current therapies or suggesting we do things differently while not sounding preachy or judgmental to those who feel the very thing I’m criticizing has helped their child. And I have to admit here that in writing the previous sentence I initially wrote, “suggesting we do things better for the sake of our kids…” which, yeah…  that sounds judgmental and yet…

So how do we protest, how do we talk about things, things we feel outrage about, things we believe are wrong without sounding like all those “autism experts” I so often criticize here on this very blog?

And the only answer I have, for myself and anyone else, is – stay open to other points of view, be willing to listen and learn.  But how do I speak my truth while understanding that what I say may upset some?  I don’t think it’s possible and I’m okay with that.  Not everyone is going to agree with me.  That’s okay.  I don’t agree with the vast majority!  But what I won’t do is stop talking about all of this.  I won’t.  And while I talk about all of this, people comment and email and reach out and give me feedback and many times after reading what they’ve written I rethink my position. I change, I grow, I learn.  All of this is a process, and by that very fact it means that what I believe, is in a state of constant flux, there’s movement, more to learn, more to understand.

I know what it feels like to feel another person is judging me.  It isn’t a great feeling.  And it doesn’t help me understand the other person’s point of view and it definitely doesn’t make me feel particularly inclined to stick around to hear what else they might have to say.  In fact, when I believe someone is judging me, my visceral response is to retreat or fight back.  But, if I can let go of that initial desire to flee, I often learn, even if it is a lesson in verifying what I already thought.  The most important thing I can do is not preach, not convince, not judge, but speak honestly about my experience.  If that resonates with others, great, if it makes people angry, so be it, if it alienates some, okay, but this blog is about our experience, mine, Emma’s and Richard’s.  I don’t speak for anyone but myself.  I don’t pretend to know what Emma’s experience is, even when she writes about it here.  The best I can do is interpret it, respond to her words, talk about what it means to me and ask more questions, but that’s it.  The same goes for my husband, I don’t and cannot speak for him.

And in the end, that’s all any of us can do.  I hold deep convictions about much of what I see going on with autism.  I object to most of what is commonly believed to be the “truth”.  Yet I also know I continue to get things wrong.  I have tremendous humility when it comes to all of this.  I am constantly learning.  People, usually Autistic people, are generous enough to share with me their experience of things and it changes my thinking.  I listen. I revise.  I tweak my constantly shifting beliefs.  I ask questions.  I continue to learn more, I realize how I haven’t gone far enough in my thinking.  I  dig deeper.

But when I am in a room where a teenage boy is being watched like he is a prisoner while eating his lunch, pelted with questions he cannot easily answer by speaking, his favorite food, in this case, rice, withheld until he finishes some other food, again in this particular case fresh, cut up fruit, overseen by someone else, whose only real power is that they can speak easily while the boy cannot, spoken to with barely concealed impatience and irritation, I’ve got a problem with that.  When I see a group of people being treated as unequal, with less respect simply because their neurology is in the minority, I feel physically ill.  When someone who cannot communicate through spoken language is treated as incompetent I feel sick.  When people speak to my daughter or speak about her, often in front of her, with exasperation, irritation, barely disguised annoyance, I feel enraged.  When a human being is treated with condescension by another human being simply because that person is deemed less intelligent regardless of whether this is true or not, I am motivated to speak out.

This is personal, it isn’t just some issue I feel strongly about.  Do I feel judgmental?  Sometimes, but more often I feel  sad.

What follows are a few photos that make me happy…

Henry and me laughing as Emma tries to convince Henry that the water isn't freezing cold

Henry and I laughing as Emma tries to convince Henry that the water isn’t freezing cold

My friend Ibby

My beautiful friend Ibby.  Photo taken by Emma

One of my favorite photos of Emma as a baby, because even then her personality shines!

One of my favorite photos of Emma as a baby, because even then her personality shines!

Larry Bissonette takes Emma's photograph

Larry Bissonette takes Emma’s photograph

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Posted in Autism, communication, Parenting

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Some Thoughts on Stereotypes and Empathy

Posted on March 25, 2014 by | 34 comments

Stereotypes are more problematic than not and yet most people, even though they may be unconscious of this, behave according to what they’ve been told or have observed to be true, even though it may not be true.  So, for example, if we are told Autistic people lack empathy, we will unconsciously be on high alert for any example of this.  In doing so, we behave in accordance with the very stereotype we are critical of.  In other words our own empathy suffers.

In the case of war, where we are fighting an “enemy” this type of stereotyping is actively sought and pursued so that those who are on the front lines can justify their actions.  We are told the enemy are “radicals” or “terrorists” or “fundamentalists” or “extremists” or unduly aggressive, thus justifying our own aggression toward them, which is seen as “good” and “necessary”.  Often we are told the enemy is deceitful, even “evil” or “bad”.  Stereotyping is usually negative, but not always.  It is a way to claim pride and feel a sense of belonging to one group, while seeing the other group as different, lacking understanding and often threatening.

To take this a step further, the people, usually a group of people who are not the majority, such as those who are being grouped into the “lacking empathy” category, may also internalize this idea and be on the look out for instances where they “lack empathy.”  And yet, most of us can find examples of this if we look hard and long enough, times when we have behaved in ways that would be seen as “lacking empathy”.

Empathy is both a feeling and the ability to sense another person’s emotions as well as imagine what they might be thinking or feeling, coupled with the ability to communicate all of this.  If communication is even remotely an issue, expressing one’s empathy will be difficult.  If you are in a country where the spoken language is not one you understood or know, its culture one you are not familiar with, would you be able to adequately express the empathy you felt in a way that would be recognized and understood?   Is it possible you would be misunderstood and labeled as something that you are not, simply because the cultural norms did not come naturally to you or you had not learned them and could not express yourself in a way that the other group recognized?

Additionally being on the defensive, feeling constantly attacked and criticized might also erode your ability to express yourself.  Feeling anxiety, judged, and ill at ease might put you on high alert.  It’s really tough to feel for other people when you are in a state of almost constant attack.  This is counter intuitive to all human beings regardless of their neurology.  But saying that those who are under almost constant attack (and for those of you who will argue that this is hyperbole, please know I am not suggesting every single person whose neurology is Autistic is feeling attacked, rather I am pointing out that many are and have been saying so for quite some time now) lack empathy is an interesting twist, exonerating one’s own actions and part in all of this, while holding another to a higher set of standards.

While stereotypes may help one identify with a specific group, they are largely negative and encourage assumptions that, more often than not, exclude rather than include.   I keep hoping we are heading toward a more inclusive society, but so many of the current debates suggest otherwise…

Emma, Mark Utter and Ibby at the ICI Conference - July, 2013

Emma, Mark Utter and Ibby at the ICI Conference – July, 2013

This post was inspired by yesterday’s post over on  Diary of A Mom, that Jess alerted me to.

Related Links from others:

Empathy as a Form of Communication by Michael Forbes Wilcox
Not Guilty by BJForshaw
I am in here by Mark Utter
The Sound and Worry By Arianna
Inventing Empathy by M Kelter

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Posted in Autism, Autistic Role Models, Parenting

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Separation Anxiety

Posted on March 21, 2014 by | 57 comments

In our ongoing “spring cleaning” (which never seems to end) I came upon a large spiral notebook filled with notes from the dozen or so ABA therapists who came to our home beginning in November, 2004 through August, 2005.  Emma was just two years old when all of this began.  It’s a fascinating document of that time period and it depresses me to no end.  Over and over the notations remark upon Emma’s “clingy-ness to Mom”, her “whimpering” and “despondency” when I would leave the room and her internal discomfort.

It is impossible for me to read the notes and not see an obvious pattern.  For a therapy that prides itself in collecting data, it is curious that this larger and, what seemed to me anyway, obvious pattern was largely ignored or, perhaps it is what naturally happens when we pathologize a neurology.  Emma’s desire to seek comfort and assurance from me, her mom, was seen as a negative, something to be trained away, something that was getting in the way of more important things.  It is ironic that this was being said about a young child who was diagnosed with autism, which has, according to all those experts, as one of its most defining characteristics, “social impairment” and an inability to form close bonds.

A two-year old not wanting to go off with a stranger is considered a “good” thing by most people.  That this same child would prefer being with their mother, even after getting to know someone else, would still, in most instances, be thought of as an excellent example of bonding and having a close relationship with one of the most important people in that person’s life – their mother.  After all, if you cannot trust your mother to protect you, to be there for you when you are two, how will you learn to trust anyone later in life?

Richard and I talk about “what we would have done” all the time.  Not as in – what would we have done if we could do it all over again – as much as, what would we do now if we had a two-year old today who was just like Emma.  And the first thing, the absolute first thing would have been PRESUME COMPETENCE.  That is the key, the foundation by which everything else would have been gauged.  This does not mean expecting a two-year old to understand, know and behave as a twenty year old.  It means we would have presumed she understood and felt what a two-year old is capable of understanding and feeling not less.

When Emma began her ABA based preschool in the fall of 2005, I was told to drop her off and immediately leave.  Yet when my non autistic son went to preschool they had a three-week “transition period’ in place where parents routinely stayed with their child, slowly reducing the time they stayed until eventually the child separated from their parent when they felt comfortable to do so.  Each child was different.  Some children ran off within the first few days, others needed more time, some needed several weeks, but no one said, “Leave now, even though your child is hysterically crying and clinging to your leg, it will be good for them.”  I remember asking about this at Emma’s preschool and being told they didn’t allow parents to stay with their child as this only prolonged the child’s suffering.  How is it that one method is good for one child, but not another?

Knowing how sensitive my daughter is and was, knowing how intensely painful this must have been for her, I can only sit here, filled with sadness that we just didn’t know better.  It was as though, when we got her diagnosis, all common sense left us.

So I am asking all my Autistic friends – What would have helped you when you were a small child?  Would it have been helpful to have your parent stay with you until you were comfortable and felt safe enough to go off on your own?  Would you have liked knowing your parent was there, even if you didn’t need to be right next to them?  What do you advise parents new to all of this?

OT session ~ 2005

OT session ~ 2005

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Posted in Autism, diagnosis, Parenting

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“How Did You Learn To Read?”

Posted on March 20, 2014 by | 29 comments

A few days ago someone asked Emma, “How did you learn to read and spell?”  Last night, in response to this question Emma wrote, “I learned by watching the words my mom read to me.”  She went on to write, “I was able to read many years ago and could write, but didn’t have any way to show it.”

I asked, “Were you able to read as a very little girl?”

Emma wrote, “Yes.”

“As a toddler?”

“Yes,” Emma wrote again.

What is interesting about this is that for years, when Emma was very young, I assumed she didn’t like being read to because when I tried she would grab the book, insist on flipping the pages faster than I could read them, and generally seemed (to me) uninterested.  But from what she wrote last night, it suggests I was incorrect about these early assumptions or at least was partly incorrect.  I am no longer shocked by all that I didn’t understand.  It no longer surprises me to find out, even now, how wrong I was and continue to be about so much when it comes to my daughter.

Because Emma did not sit quietly while I read to her, I thought she didn’t like being read to.  Because Emma preferred holding the book and would turn the page before I had time to finish reading the words I assumed she wasn’t interested in the story.  Because Emma protested if I tried to take the book from her to continue reading, I assumed she wanted to be left alone.  Because Emma seemed distracted while I read, I believed she didn’t like the story, didn’t care for the book, didn’t like books in general.

How would I have viewed her various therapies, preschool, and later grade school, had we understood that she already knew how to read at such a young age?  Our decisions on how to proceed, our opinions regarding what others told us, so matter-of-fact, so sure of themselves… who knew how wrong they all were?   How wrong we were?

People say things like – parents know their child better than anyone.  In our case no one knew our child better than anyone.  We didn’t.  All those therapists who worked with Emma didn’t.  All her teachers, everyone who came in contact with her, not a single person during those early years ever said, “I’m guessing she already knows how to read” or “maybe she already knows, but we haven’t found a way to help her show us all she knows.”  Emma’s need to move, her inability to consistently say out loud what she intends, her deep need for sensory input, her attempts to regulate herself, none of that was understood by anyone, including us.

Had we not begun to find ways for Emma to communicate through the written word, had we insisted on her “speaking,” we would continue to be in the dark. All the things emphasized in  school for a child like Emma who is physically capable of articulating words made us believe spoken language was what we needed to concentrate on.  What we are seeing is that the less we focus on her speaking and the more we focus on her writing, the more she is speaking.

“Hey Em, do you want to put the smaller string in your backpack, just so you have it?” I asked as we headed down to meet her school bus this morning.

“N” “O” Emma said, as she bounded toward the elevator.

A self portrait in the making

A self portrait in the making

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Posted in Autism, communication, reading

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“Put it on the Blog!”

Posted on March 17, 2014 by | 15 comments

“Put it on the blog!” Emma said with glee as she bounded into the house. A master at multi-tasking, she twirled her string, unzipped her coat and raced off to put on some music all within seconds of opening the front door.  I knew what she wanted to put on the blog.  She’d successfully completed a catch in Trapeze School that morning.  I knew it had been recorded.  So… here it is, for all of you to see.


Yesterday afternoon Emma wrote some pretty wonderful stuff about how her body and mind are often not in sync and what that’s like for her.  We taped some of it and once I have her permission and we’ve uploaded it, I will attempt to post it here.

Earlier I showed Emma a NYTimes article about the missing Malaysian Airlines jet leaving Kuala Lumpur heading to Beijing.  I asked Emma what she thought and she wrote, “It is terrible and worrisome for all of us.”  I then asked if she had any questions and she wrote, “Has anyone asked for anything yet?”  I asked her if she meant a ransom note of some kind, to which she answered, “yes.”

I write this as an example of the sorts of things we discuss these days and because there are some who continue to doubt Emma is capable of understanding such things…

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When Time Stands Still

Posted on March 13, 2014 by | 12 comments

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

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“So Many Kids are Just Like Me”

Posted on March 12, 2014 by | 32 comments

“I am smarter than most people think.  So many kids are just like me.”

Emma wrote this yesterday in response to my question, “What would you like teachers, who want to teach Autistic kids, to know?”

There are a number of young people who write to communicate things that they cannot with spoken words, just as Emma does.  Many of them are starting blogs of their own, some have parents who have blogs and like Emma they are beginning to take ownership of those blogs.  On the “Resources” page here on Emma’s Hope Book I’ve listed a great many blogs beginning with those written by non-speakers, or people who write to communicate.

When Emma wrote “so many kids are just like me” I thought about how when Emma was diagnosed I knew of none (of any age) who wrote to communicate.  The entire concept was completely foreign to me.  In fact, and I hate admitting this, I hadn’t spent any time considering neurology, literacy, language, or which parts of the brain process language.  I remember being confused by the idea that someone who didn’t speak, could still read.  I’ve come a long way!

I would like to take the opportunity to list here just a few blogs that I personally know of where people around or near Emma’s age are writing to communicate.  This is by no means a comprehensive list and I welcome any additions, which I will add here and on the resources page as they come in.

Oliver – Day Sixty-Seven
Philip – Faith, Hope and Love… With Autism 
Aidan
Cindi’s Blog
Henry Frost – Ollibean
Matteo – Matteo’s Loving Blog
Ido – Ido in Autismland
Joey Lowenstein
Nick – Teen Typer

“So many kids are just like me…”

Emma with her friend Henry ~ January 30, 2014

Emma with her friend Henry ~ January 30, 2014

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Justifying Our Words

Posted on March 10, 2014 by | 25 comments

Richard and I have conversations that other people might find odd.  We have little inside jokes we think funny, but that no one else is likely to agree.  We reference conversations we had years ago with a single word or sometimes even a look.  It’s the same with our son and daughter.  In fact, with all of my family and close friends I have at least one or two references that we think funny, but that others witnessing might not understand or see the humor.  With Emma, our inside jokes often come in the form of music.   We will sing to one another or utter a sentence said by someone else years ago, but that now makes all of us laugh.  For no particular reason one of us will say, “Get down Angelo!” and we will collapse in hysterical laughter or instead of saying “Good morning” we will mimic the sound of a quail.  The other will then respond with a similar noise and it is better than any greeting made of words.

When Emma began writing to express her thoughts, insights, and experience of life, I thought she would be so relieved to finally be able to communicate these things to us and the world.  So when she didn’t seem particularly eager to write, I wondered how and why that was possible.  I know communicating in language, whether it is in written or spoken form is difficult and hard work, but I couldn’t figure out why she wouldn’t be overjoyed to finally have this connection with other people.

A few months ago I asked Emma about something and she wrote, “Words are not as meaningful to me as they are to you.”  I think about that sentence a great deal.  Emma then told me she senses people.  She wrote, in reference to a question about someone who works at her school, “I can hear her.”  She then added “I feel her.”  I used to be confused by these sentences, but over time I have come to believe Emma means this literally.  Barb Rentenbach, the co-author of the book she wrote with Lois Prislovsky, I Might Be You talks about this as well.  Emma has an acute sense of people’s inner life and as a result, having to translate all of this into words must be tedious and (this is my interpretation of what it might be like for her) a step backwards.

Richard has a theory that Emma is operating at a “higher vibration” or frequency than either of us.  I have the same thought, but use the words a “higher plane,” which has the same meaning.  We both believe Emma is capable of a more sensitive and intense understanding of people than we are.  If I think about those I am close to, I am in tune to their vibes at a higher frequency than I am to strangers.  But what if I was attune to all people I came in contact with at that same level of intensity?  What if I “felt” them the way I can feel my husband and close friends?  What if I sensed the essence of them before they said a word?  What if the words they then said, rote responses to questions like “how are you?” were untrue?

We, non-autistics, tend to view our neurology as better, more efficient, less socially awkward, but in many ways our word-heavy way of communicating is less truthful.  We say things we don’t mean.  We say things we don’t believe, we agree with people we think are more powerful.  We are easily intimidated.  We are swayed by groups of people who share beliefs, even if those beliefs are not something we agree with.  We learn at an early age to question our instincts, to tamp down our emotions, to apologize when we are not sorry, to say things we do not mean and then, once we are adults, we use words like “polite,” and “kind” to justify the lies we tell.

“Words are not as meaningful to me as they are to you.”

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

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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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Emma’s Story Written Entirely On A Qwerty Keyboard!

Posted on March 6, 2014 by | 27 comments

Recently we painted both the kid’s bedrooms.  They each found the colors they wanted.  Emma chose a beautiful sea greenish blue and a luxurious red for the baseboard, exposed pipes and doors.  She picked out a gold-colored mesh to cover her new four-poster bed.  Her new room is beautiful and I have found myself wandering into it, just so I can soak up the beauty of her newly painted walls, her princess bed with golden, cascading canopy and all her stuffed animals filling the floor to ceiling bookshelves.

Yesterday during Emma’s RPM (Rapid Prompting Method) session Emma wrote that she intended to write a story.  I’m including a link here to the post I wrote not long ago entitled “How We Got Here” for those of you new to this blog.  This is the story Emma wrote by typing on a qwerty keyboard attached to an iPad.  This is Emma’s first full story written entirely on a qwerty keyboard!  And as always, Emma approved this post and the accompanying photograph of her room.

                               The Girl Magician

From the bedroom of a house in Southern Georgia, there lived a girl named Judy.  Her room was dazzling.  Her time was spent by herself, and she liked it that way.

She had visiting hours for family to check out the best room in the house.  When visiting hours were over, Judy got to work on secret projects.  She noticed that when she changed the color of her scarf, many other things changed also.  When the blue scarf attached to her, she became very talkative.  The orange one made her laugh and the brown one made her cry.

Judy wore a yellow scarf during visiting hours one day.  Family was calling her name, but they did not see her.  She was invisible.  Judy was someone with magic powers.

The End

The Princess Bed with bookshelf filled with animal friends. Notice the newly painted blue walls with red trim!

The Princess Bed with bookshelf filled with animal friends. Notice the newly painted blue walls with red trim!

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Posted in Autism, Creative Writing, Rapid Prompting Method

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