Tag Archives: RPM

Today’s Post Brought to You By Emma

Written by Emma Zurcher-Long

“Today I will tell a short story about a girl who wanted to speak to the wind.  She listened with ears attuned to wind’s song, and desired to speak with its power and beauty.  But the wind was not used to listening, and the sounds she made were ignored.  People heard her and told her to be less noisy.  The wind was loud, yet no one attempted to quiet it.  The girl understood the wind’s voice and eventually it heard her.  Neither one spoke with words.

“The End”

Emma Chose this image from a google search "Girl in the wind"

Emma chose this image from a google search “Girl in the wind”

Homeschooling, Unschooling…

We are homeschooling, or unschooling or…  I actually don’t know how these terms are defined and haven’t had time to do the research necessary to speak about any of this with any authority, let alone knowledge.  In fact “time” and what that means has kind of blown up in our faces as there never seems to be enough of it.  Richard and I are scrambling to make this work, while making jokes about how many clones we would need to do so, if cloning were an actual thing.  All of this is very new and we have not fallen into a routine yet.  I guess the best description of what we are doing at the moment is – winging it.  We are winging it, though this will change as time goes on, we think.  We hope.  We expect.  What I can say is that Richard asked Emma what part of history she was interested in learning and she chose ancient Egypt and ancient Rome.  This then led to several lessons on the Druids.  Who knows where all of this will lead next!

Meanwhile, Emma and I have embarked on the exciting adventure known as the German language, as per Emma’s request.  We had a particularly hilarious conversation a few weeks ago when Emma first brought up her interest in learning German.  I was somewhat incredulous and kept saying things like “Really?”  and “Are you sure you want to learn German?”  and “What about Spanish or French?”  But no, Emma was not to be swayed, so German it is.  And guess what?  It is SO much FUN!!  We are using a couple of different programs, one is Duolingo, which was recommended by a couple of people.  It’s a free online language program.  Did you know all nouns in German are capitalized?  Why?  Who knows, lots of theories, but there is no one answer as to why, that everyone agrees with.

In addition Emma is working on several writing projects.  One is a chapter idea, in which we will write alternating chapters.  Emma wrote, “How about starting on what you presumed parenting would be before I was born.”  I said, “Can you ask me questions, things you want to know?”  Emma wrote, “Very happy to ask.”  I said, “And what will your chapter be about?”  Emma wrote, “What I presumed the world would be like when I was a baby.”  I cannot wait to hear what she has to say about that!

We continue to make our way through Malala’s autobiography, I am Malala about the Pakistani girl who fought for her right to have the same education as boys and was shot by the Taliban.  This has led to some terrific discussions about advocating for one’s rights, oppression, prejudice, violence, silencing, education, and the lack of.  Recently Emma wrote, “Her life is unlike mine.”  (Referring to Malala.)  “But the oppression is similar to what I have experienced.”

While I continue to go through periods of abject terror at the thought of what we have undertaken, these moments are tempered with the excitement and joy I feel knowing that pulling Emma from school was by far the best thing for her.  She is ecstatic and the marked change in her anxiety and stress levels makes all of us very, very happy.

Emma chose this image for today's post.

Emma chose this image for today’s post.

A Traffic Jam and an Analogy

Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city.  (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center.  You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.)  We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.

When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session.  Emma wrote, “What happens if traffic never gets moving?”

Pause.

“You are stuck in a rut.  It’s like autism.  When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be.  It is always clogged like a caged mind driving through traffic.”

This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before.  In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me.  She wrote that she would.  She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”

“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress.  Is that accurate?”  I asked.

“Understand that I cannot always filter all that is going on easily.  My string grounds me.  Not having it can cause horrible stress, but it can also distract me.”

I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.

Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”

“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?”  I asked.

“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”

“Okay, I totally get that,” I said.  “With Soma you wrote, “What is wrong with the world?”  Then you answered your own question by writing, “In fact nothing is wrong with the world.  We are the problems.  We are not right.  We see things and create a problem.  I don’t have autism label on my forehead like Soma’s dot.”

(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear.  Soma, being Soma, made a joke and did not take offense.)  Emma then wrote, “But I have to walk around all my life with this label.”

I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”

“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”

“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”

Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”

“Thank you so much for clarifying all of this Emma.  Do you have anything to say to parents and educators who are trying to understand?”

“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.

Soma and Emma ~ June 12, 2014

Soma and Emma ~ June 12, 2014

Silencing

“Having a voice after years of being ignored saves me from treacherous loss.  Years of nothing, makes the smart ideas percolate.  It is a strong force within, waiting for encouragement.”  ~  Emma

There are people who would like to silence my daughter and those like her.   One person recently accused me of “exploiting” my daughter to “satisfy your own vanity and craving for attention” by publishing things Emma’s said she wants others to read.  This particular person went on to write (as though to Emma), “Autistic people are irrelevant in your mother’s world.  And parenting is more of a competitive sport to her than a domestic responsibility.  That is truly disgusting.”   And yet if I do not publish the things my daughter writes and says she wants others to read and understand, then I become the silencer.  I cannot presume her competent, but then selectively do so, by not publishing what she has asked to have published.

As with my older child, we have discussed, and continue to discuss at length the internet, the importance of realizing what one says on the internet, stays on the internet.  We have discussed issues around human rights and advocacy.  We are currently engaged in an ongoing discussion related specifically to blog writing because of the book we are reading, I am Malala in which Malala writes about being increasingly threatened and silenced by the Taliban and how her right to an education was taken from her simply because she was born female.

There are those who say that the words someone like my daughter writes are not really hers.  This is a different way of silencing, but it is as equally brutal and effective.  They say that because science has not shown RPM to be an easily replicated method it is therefore suspect.  They say, parents like me are so determined to believe in their child’s intelligence and competence, we will go to any lengths to “believe” even when it’s clear (to them) our children cannot possibly be the competent beings we know they are.  This is the opposite of presuming competence.  They go on to suggest that though (in the case of RPM, where there is no physical contact of any kind) no one touches my daughter, those nearby are able to influence, so much so that they can actually force the person to point to letters, which spell out things they do not mean to write.

People like my daughter are in a perpetual state of limbo, a kind of no man’s land, neither here nor there.  For those of us speaking out, writing about all of this, giving our children a platform from which to write, we are easy targets.  There will always be people who disagree. There will always be people who are threatened by ideas that confront what they believe and have been told.  There will always be people who viciously attack for reasons that may or may not be apparent to those they strike out at.  I’ve been fortunate and have not had many who have attacked.  In fact this recent commenter is the only one who has come after me, repeatedly, with such viciousness and undisguised hatred.

But I will not be silenced, nor will I allow my daughter to be; as long as she wants to be heard, I will do all I can to make sure she is.

*Emma chose this photograph to go along with her and my words.  Yes, I read this to her, before publishing.  And sadly, it seems, I must also state the obvious,  I do not and will not publish anything ever, that she does not want me to publish.  This blog will disappear the instant Emma tells me she wants it taken down.

Emma Riding Beau

Emma Riding Beau

 

Emma’s Ten Research Questions

* A note from Ariane:  What follows was the result of a discussion about people who say one thing, but actually do something else.  Emma then wrote a list of questions she would like to ask such people to make sure they were genuine.

Emma wrote that she’d like to do some research on “who is faking their love of autistic people.”  She proposed that there be a list of questions.  This is the list she wrote.

1.  Where did you get information about autism?

2. What was your initial reaction after reading (the information)?

3.  How many people did you see?
a) Less than ten
b) Less than fifteen
c) Fifteen to thirty
d) More than thirty

4. What will you do if you see a five-year old Autistic person?
a) ask curious questions
b) Advise parents
c) Ignore them as if they are invisible
d) Talk to the child by saying, “Hello”

5. If an Autistic teenager holds (touches) your clothes, what will you do? (No choices)

6. What do you expect to see in an autism classroom?

7. Will you let an Autistic teenager spend the weekend with your family?

8. What present will you buy for an Autistic person?

9. Will you accept if autism is not cured?

10. Did you enjoy the questions?

From Ariane:  What struck me as Emma created this list was how so many organizations, therapy centers, schools, treatment facilities and people who have chosen the field of autism as a career and yet do not treat Autistic people with the respect and care one would show others one supposedly “loves.”  Any who suggest the conversation that continues to take place regarding autism and our autistic kids is not affecting them, is sadly mistaken.

Emma writes her list of questions

Emma writes her list of questions

A Stim or “Self-Care”

I asked Emma if I could write a post about her string and she has agreed.  Yesterday she told Soma about her string.  Emma wrote by pointing to letters on a letter board.

“It is sometimes like a pet, but I don’t have to walk it every day. It does not bother me with noise. It helps me think and I can have secret names for it…”

When Emma was around two she had a mermaid finger puppet that she would hold in one hand and run up and down the hallway leading to our front door.  The mermaid had long black hair and she’d watch its hair sway as she ran.  Later, Emma began twirling a strand of her own hair.  She would twirl it around, but then began putting it in her mouth.  The strand would get tangled and knotted and no matter what we did, that strand of hair would escape our attempts to keep it contained.  We were advised to always put her hair in a pony tail, or braid it, which we diligently did, but despite our best efforts, the strand would come loose, wrapped around a sticky finger, wound and unwound; no brush or comb could tame it.

Then, one day at a birthday party Emma caught hold of a balloon string, the kind that one uses for wrapping presents with.  It was yellow and the balloon had long since popped and been cut away.  I kept thinking she wanted the balloon and asked the parent hosting the party if I could take another balloon as Emma’s had popped.  But Emma wasn’t interested in the balloon.  It was the string she wanted.  I was so fixated on the balloon it took several balloons before it dawned on me that the balloon was merely an annoyance and removing it from the beloved string was necessary.

That yellow balloon string was joined by another balloon string, this time blue.  Emma would intertwine the two, twist them together and twirl them.  This then evolved to packing tape, which Emma would strip down to narrower pieces and then gather a dozen or so up and twirl them about.  A few years ago, she began adding brightly colored duct tape to a few of the pieces, thereby binding them together and it became a kind of work of art, constantly changing, growing, evolving.

Now, the packing strips count to over a dozen, some are several feet long, others are shorter, some even less than six inches, but each string is part of a larger whole and when one goes missing, the upset it causes can be terrible.  Still, we have come to understand how important the string is.  When Emma is writing she wraps it around the other hand, or will place it in her lap, or sometimes will even set it down on the table next to her left hand.  But it is always close by.  We have come to see that this is Emma’s version of a stim, or as Emma has described it, “self-care”.

Yesterday Emma wrote about her string with Soma and I once again marveled at her creative and inventive mind.  I have come to see it as a thing of beauty, ever-changing, a metamorphic reminder of life, attachment, movement, and the never-ending dance we are engaged in with ourselves and each other.

A collection of balloon strings

A collection of balloon strings

The string with masking tape.  A precursor to the colorful duck tape that would follow.

The string with masking tape. A precursor to the colorful duct tape that would follow.

The "string" with duck tape

The “string” with duct tape

Soma and Emma

Soma and Emma

Body/Mind Disconnect & Soma

Many people are baffled when they meet Emma and hear her speak.  Their confusion increases when they read things she has written, like ‘this‘, ‘this‘ and ‘this‘.  How is this possible?  How is it that someone like my daughter can speak, but not accurately answer the question, “how old are you?”  Yet, hand her a laminated number board and she has no problem pointing to the number one, followed by the number two.  Give Emma a laptop computer and she will be able to type in the password, as well as type the name of an artist to find her favorite youtube videos, but ask her what she thinks about the Emily Dickinson poem #656 that begins with “I started Early – Took my Dog – And visited the Sea” and she will say nothing in response.  Yet, when I hold her qwerty keyboard that’s connected to her iPad, she immediately wrote, “You taste the ocean, but feel man’s pursuit.”

Emma wrote, “I can tell my totally impish body – Can you please sit still – and then it will do something different.”  Is this similar to the thoughts and ideas that she is able to write, but cannot speak?

In Soma Mukhopadhyay‘s newest book, Developing Motor Skills for Autism using Rapid Prompting Method she writes, “Autism is not just difficulty in verbal interaction; it is also difficulty in tactile as well as kinesthetic interaction…”  “Because of that, an Autistic person may not be able to adapt to new clothes, eat new food, or learn new movements, even though he may have perfect understanding about them.”  My copy arrived the day before Emma and I got on the airplane to come back out to Texas for another of Soma’s four-day camps.  I’ve been reading it whenever I have time, and highly recommend it.

One of the things Emma loves doing while out here is to have a skill building session with the lovely Rebecca Cooper every day after her last session with Soma.  Rebecca uses the techniques Soma describes in her new book.  So, for example, yesterday Rebecca showed Emma how to draw with a colored pencil several boxes, one dark, one light, demonstrating the difference in pressure to obtain such variations and then went on to discuss how light causes shadows.  They then drew a picture of a tree with the sun shining to its left, casting a shadow on the ground and along the right side of the tree’s trunk and branches.

As Soma writes, “The idea of writing this book came from a necessity.  Working with my own son Tito, I realized how his mind and body were disconnected.  As a parent I had two choices – support his physical needs throughout his life or try to do something about it so that his hands that flapped to stimulate kinesthetically also knew how to soap himself in the shower, clean himself, make his bed, fold his own sheets, and assist his thoughts to handwrite independently.”

Rebecca and Emma Discuss Lighting and Shadows

Rebecca and Emma Doing Skill building Exercises

 

 

“Let’s Talk About Communication Abilities”

*As always Emma gave me permission to post this.  Emma typed her words by independently pointing to the letters on a bluetooth qwerty keyboard attached to her iPad.

This morning I asked Emma what she wanted to talk about.  She wrote, “How about we talk about communication abilities.”

A:  “Okay, that’s a great idea!”

E:  “Especially for someone like me.”

A:  “Yes, tell me more.”

E:  I am able to communicate really well with words, but people don’t expect me to, so when they see me typing, they eagerly watch, but they don’t listen to what I write as much as they listen to the words tumbling from my mouth.”

A:  “I think that’s such an amazing observation!”

E:  “Know that believing in someone’s ability will be greeted with inward smiles, so you must never give the doubts breathing space.”

We talked about “ability” and the power of believing in both oneself and another versus doubting.

E:  “Many insist on finding proof, but when sitting with someone like me they only see the things I do that confirm what they already believe and turn their backs on all that would prove them wrong.”

A:  “Is there anything or anyone specific you’re referring to?”

E: “It is what I have experienced, sadly.”

I told Emma how sorry I was.  We talked about this more and then I said, “I think your words really do affect many people who are listening and as a result are changing how they see their child.  Even if only a few people listen, it’s worth repeating, don’t you think?

E:  “Some that change their views, teach others well.”

A:  Yes, I think so too.  Many people have reached out to us on Facebook and on the blog to tell us.  It’s always so wonderful when we hear from them.

E:  “Now we must remain patient and doggedly trudge ahead.”

I told Emma, she was leading the way and I would always follow.

E:  “Together we will eagerly tether our ideas, so having happy thoughts will woo anger.”

Ariane and Em ~ May 2014

Ariane and Emma ~ May 2014

And Then Suddenly Life Changes

Life has, quite suddenly, taken a dramatic turn.  Over the weekend I finally came to the decision that I cannot keep my business AND finish this book I’m writing AND work with Emma AND have the time to study this method of helping her, so that I can help others help her.  This feels like a good decision, the right decision, one I’ve been struggling with since last fall, but finally feel ready to take the actions to make this happen. So this morning as I looked around my studio, wondering how I was going to sort through everything and begin the process of dismantling a business and a working studio, I received a call from Emma’s school.  They are putting on a show next week and there have been some issues that required my presence.  As I’ve been going to her school every Tuesday afternoon in an attempt to teach some of the staff how to support her so she can write with them too, I left a little earlier than usual.

After school we met with the principal who asked Emma what she did for mother’s day, Emma wrote, “Mom helped me talk to my brother.”

“Oh!  What did you talk about,” the principal asked.

“We talked about whether Truman should have dropped the bomb on Hiroshima and Nagasaki,” Emma wrote.  Then she stood up and ran across the room, whipping her arms around like windmills before settling back in her chair.

It was decided that Emma needs to be in a classroom where she is being taught the same curriculum as her same age non autistic peers.  Except that she is not yet able to write with anyone at her school the way she can with me, so I volunteered to come in until someone can be trained.  It makes perfect sense.  But as Emma and I left her school yesterday, I thought to myself – what did I just agree to? It was one of those moments when the full weight of what you’ve committed to hits you and you think – am I going to be able to do this?  Really?  Can I do this?

Well, I guess we’ll see.  And for the next ten days I will get an interesting view into how her school does things.  And here’s the other thing…   There is nothing I could do that comes even close to being as important as finding a way for my daughter to communicate in a way that gives her greater access to this “awkward world” as she wrote the other day.  No book I might write, no piece of jewelry I might design, nothing comes close.

My life is suddenly no longer what it was.  I am nervous about going to her school with her and essentially being her one on one aide, but I am also really curious to see how it goes and I’m excited to see her in a class where, I’m hoping, she will be challenged.

Before we left school yesterday, the principal asked Emma whether she preferred being referred to as a young lady with autism or an Autistic young lady, Emma wrote, “I am an Autistic girl and proud of it.”

The principal smiled and asked, “Why do you prefer being called Autistic?”

“Because autism is part of me and can’t be removed,” Emma wrote.

“That makes sense,” her principal said.

I told the principal and assistant principal how fortunate we are that I have a number of friends who are Autistic, one of whom is like a sister to me.  And then Emma wrote, “They are my Autistic family.”

How lucky are we?

The journey continues…

Emma and Me

Emma and Me

Asking Emma

Imagine for a moment if you had an idea.  It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!”  Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too.  Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things.  Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add.  In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction.  Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?”  “Are you thinking of something funny?” or “Oh!  Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue  with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.”  Including Emma in our conversations is not something we regularly did.  It’s not that we never did, it just wasn’t something we regularly did.  Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add.  This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her.  But once she began writing, all bets were off.  Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought.  All of my assumptions, all those misunderstandings, I now view differently.  Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird.  She may be, but she may not be.  But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts.  I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say.  My misunderstanding of what was going on for her made for a great many misunderstandings.  Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind.  They would not be able to believe that she has the complex and brilliantly observant mind that she has.  For most people this is a very difficult concept to fully grasp.  It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Emma

Emma

Outpouring of Words ~ By Emma Zurcher-Long

Three Haikus By Emma Zurcher-Long for #AutismPositivity2014

*Emma writes by typing on a bluetooth qwerty keyboard attached to her iPad.  For more about the way Emma communicates, read – How we Got Here

Springtime
My writing blossoms
greeting welcoming smiles of
 encouragement gladly.
Springtime

Springtime

Frog
Green with envy you
strain to jump as far and high
daring to come close.
Frog

Frog

Rain
Lashing down, I run
to find shelter but there’s none,
laughter, roaming, I stay.
Rain

Rain

As the parent to a child who has been described as “verbal” but who was thought to be unable to understand much of what was said to her because she could not answer with spoken language questions such as, “How old are you?”  I will never be able to adequately describe what it is like to read my daughter’s words.

This blog began as a document of hope for our daughter, but it has evolved to become a message of hope to parents who feel the kind of despair and terror I once did.   As Emma wrote, “I am smarter than most people think.  So many kids are just like me.”

This post is dedicated to the Autism Positivity Flashblog going on all day today.

If you would like to submit to the flashblog, here is the submission form.

FC and RPM

Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are often a bridge to the ideal goal of independent communication.  There are those who may not be able to achieve full independence because of physical challenges. It bears repeating, however that the eventual goal for all who are physically able to, is independence.  And yet both methods are criticized.  In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words.  Even though no one touches them as they type.  Even though there is no physical contact of any kind as they write.  Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind and body that are often not in sync.

In the case of FC there are a number of people, now independent, who began typing to communicate, but for physical reasons need the help of another person to provide resistance or to help with physical challenges.  As with Applied Behavior Analysis (ABA) where a child is given hand over hand prompts that are hoped to be eventually faded, so it is with FC.  However FC is continually attacked for using, often less, physical prompts than ABA practitioners use.  Some people like Barb Rentenbach, Peyton Goddard, Jennifer Seybert and Tracy Thresher are now typing with a finger placed on their shoulder or the middle of their back.  If one goes back to how they began to type, this shows enormous progress.  All of them are intent on becoming fully independent and work extremely hard in trying to reach this goal.  Yet, it is interesting to note that few people object or question ABA’s use of hand over hand prompts.   What is good for one, seems to not be good for all. Why is that?

Carly Fleischmann who types independently wrote, “I don’t have a hand up my butt like a puppet…”  Despite her words, if you google “Carly Fleischmann” the second search term that comes up after “Carly Fleischmann blog” is “Carly Fleischmann fake”.  Oddly, when entering “Stephen Hawking” into google, the search terms are “Stephen Hawking quotes” and “Stephen Hawking black holes”.  Why is it that Carly Fleischmann, who types independently, is viewed with suspicion, while Stephen Hawking is not?

RPM, the method created by Soma Mukhopadhyay, does not use physical prompts at all.  No one touches the person writing, but instead a stencil board is held in front of the person writing.  The stencil letter board, it is hoped, will be eventually faded and replaced with a laminated letter board with the goal, in my daughter’s case, being able to move to a qwerty keyboard, which is how Emma now communicates with me as well as with the person she has weekly RPM sessions with.  Still, there are those who insist that no matter how steady the letter board is held, the person holding it is manipulating it ever so slightly and enough to influence the person writing.  Or, as is the case with Carly and others who type independently, it doesn’t matter, the fact that they are not able to speak seems to be all people need to discount their words, no matter how they communicate.  All of this would be laughable if it were not for the tragic fact that people’s voices are being discredited and silenced.

My friend Kerima Cevik, of the blog The Autism Wars, recently wrote “My Standing Position of Facilitated Communication” and posted it on Facebook.  It immediately went viral and brings up a number of excellent points consistently ignored by those who seek to discredit FC.  Please read it.  I find it incredible that people, almost all of them psychologists, just as Bruno Bettelheim claimed to be (and not neuroscientists) continue to come up with all kinds of theories regarding any number of things involving autism and Autistic people, things like Theory of Mind and Cognitive Empathy.  All of these are “theories” and not scientifically proven as fact, yet they are treated as fact, while things like RPM and FC are ridiculed for not being scientifically proven and dismissed, while other methods like ABA are applauded, funded and given a golden seal of approval.   One more question to consider, why is it that people who are aphasic are not immediately given ABA?  No one recommends ABA as a therapy for someone who has had a stroke and as a result cannot speak.

I urge all of you to consider, regardless of what other people decide they believe, if a child cannot communicate through spoken language what are their options?  Whatever the approach is, whether it uses pictures, hand gestures, eye movement, pointing, or some other form of communication I have a series of questions I ask.

Does this approach presume competence?

Would I use this system for a non-autistic person who cannot speak?

Does it infantilize?

Is this way of communicating limiting or is it a bridge to more complex communication?

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

 

The Power Of Understanding

I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.

If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now.  Please feel free to share widely.

As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”.  Both agreed.  What has occurred as a result is nothing short of incredible.  Understandings have been forged, exchanges of ideas and beliefs have been made.  They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer…  Many people take these types of conversations for granted.  But we do not.

Listening and learning…

Nic & Em

The YouTube Video of Ari Ne’eman and Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).   

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on.  At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic.  As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By  the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?”  (I know, talk about asking the obvious…)

I am painfully aware that  by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media.  If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change.  So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made.  And what about those who do speak, are their feelings not important?  These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear.  Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.”  I suggested.  Once outside I asked Emma if she wanted to discuss the video Ari was referring to.  Emma wrote, “The video has a mom who is lost and cannot rationalize hope.”  Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.”  Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced.  Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

What Are State Assessments Assessing?

Yesterday, while at Emma’s school, her teacher showed me a sample of the state assessments that Emma is required to take, though there were record numbers of parents this year who protested them by opting out.  These assessments are done twice a year and take an enormous amount of time and energy from all involved.  The page the teacher showed me was about Ronald Reagan.  It was a series of facts that are read and then the student is supposed to choose the correct answer from two choices related to the facts just read.  I decided to use the page as an example of why I so vehemently object to these state required assessments as they are currently laid out.

I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud.  This is how the test is typically done.  Emma chose the last choice to each question every single time.  I then said, “Okay.  Now let’s do this using your letter board.  I asked the same questions, only this time, offered her the letter board and without any hesitation she got 100% correct.  I then asked her to circle the correct choice and she was able to do that too, which was interesting to see.

We did not go over more of the assessment, but for all those students who are like Emma, these assessments are useless.  They are not telling anyone anything helpful.  In fact they are giving inaccurate data.  If Emma had not been given the opportunity to learn to communicate using a letter board, she would have no way of proving she knows the correct answer.  How many children are just like Emma?  I do not believe for a second she is the only one who cannot say what she knows, but if given appropriate accommodations would be able to.

It is incredibly frustrating to have the state require her to take such assessments, which, as they are currently written, do not accurately assess what she is capable of.  This is my biggest objection with so much that is done when it comes to autism.  Far too often the current conversation is by people who are looking at things, similar to these assessments, and basing their beliefs on the information they are getting from them.  Incorrect information that tells us nothing of what a child is actually capable of.  Assessments, that in fact are assessing nothing.  What is being learned?  What a massive waste of time and money.  We should be doing better.  Our children deserve better than this!

*We are hoping to have the video of Emma’s presentation at CoNGO up on the blog tomorrow!

April 9, 2014

April 9, 2014