Tag Archives: Halo Center

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

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

 

 

“Voices”

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

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

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

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

A Session With Soma

A Session With Soma

Returning Home

Em and I returned home Friday night.  It was an exhilarating trip, but also an exhausting one.  These trips always are.  We went from having daily sessions with Soma (you can read more about Emma’s experience working with Soma ‘here‘, ‘here‘ and ‘here‘ and more about Soma and RPM by clicking ‘here‘) that were so incredibly exciting, I could barely take in all that my daughter was writing.  Personal, gut wrenchingly, painful insights, loving notes of gratitude to my husband and me that made me weep with joy, but also bittersweet because it is she who has had to put up with us and not the other way around.  Her writing displays an almost unfathomable intellect, wisdom beyond her years as well as compassion and patience for all who do not understand her, for those who doubt, for those who do not believe her and all she is capable of, for all who talk down to her, my daughter is a beacon of kindness, forgiveness and compassion.

I do not want people to come away with ideas about saintliness, holiness or angels being dropped down from the heavens and inhabiting her body.  I cannot and do not believe in any of that and it dismisses the many challenges and struggles my daughter must endure.  Above all else my daughter is a human being, just like you, just like me, very much grounded on this earth and in this life, but she is also exemplary in her ability to see the good in others.  It is something I am trying hard to emulate.  It is as though the more she writes about what she believes and thinks, the angrier I become.  The more enraged I am that we have all believed so easily, without question, the standard assumptions about Autistic people and autism and what that means.

I understand that for many they just cannot believe someone like my child is capable of knowing so much despite having had little formal education, but instead has spent all of her school years segregated in special education schools where she reads below age level literature and is taught the value of nickels, dimes and pennies because it is assumed she does not understand concepts such as money and time.  I understand.  I do.  I was one of those people not so long ago.  But now I know otherwise.  We are fortunate that her current school is open, willing and interested in learning all she is capable of.  They have expressed interest and their intent to support her and to help in any way they can.  We will be revising her IEP soon.  It will be quite a revision!

Now we are home and I know better than to expect I will be able to pick up where Soma left off.  I know better than to think I will be able to sit down with my daughter and accomplish the same level of writing I witnessed this past week.  I have to pick up from where I left off before our trip to Texas.  This can feel incredibly frustrating and even depressing, but I am learning to not delve too deeply in despair, but rather continue moving forward with the knowledge that I will and already have progressed in my ability to support my daughter better each day so that one day she will be able to converse with me on a similar level as she does with Soma.

This disparity between what Soma is able to do and what those at home then try, has caused a few to claim that therefore Soma’s method is flawed or is cause for suspicion and doubt.  What I have come to understand is that my Autistic child is intensely sensitive to her relationships.  I cannot sit down and expect to have her write to me as she does with someone who developed this system and who has fine tuned it, perfected it along the way, while working with close to a dozen people every day for over ten years now.   It is akin to expecting that I will be able to set a diamond as well as a master jeweler who has been perfecting his craft over the last twenty years or after taking a painting class be able to create something on par with Rembrandt or after taking French 101 go to France and speak fluently.  We do not expect any of these things from each other or ourselves, and yet, people decide something like RPM will be easy and simple and anyone will be able to do it instantly and when they cannot, the flaw is in RPM.  I have met too many other people who are practicing RPM to see that it is this thinking that is flawed.

Em chose toenail polish for both of us!

Matching toenails

My Resistance to Practice

I’ve been struggling, feeling very emotional in a “bad” sort of way.  You know how when you’re weepy all the time for seemingly no good reason?  Those times when you keep crying every time you hear sad music, and all music strikes you as sad, even really upbeat music, or when someone looks at you with a stern face, or uses a harsh tone, or if you read something sad, and everything you read seems really sad, and you keep having to wipe tears from your face and hope you remembered to bring tissues with you, but you never do?  Yeah, sort of like that.

*Sigh*  It’s been a tough few weeks.  I have felt off-balance because I have been expecting myself to be able to do what I’ve seen a number of people do with my daughter, but that I have not been able to do.  I returned from our trip to Texas and thought, after only a couple of sessions with my daughter, I’d be able to start asking her open-ended questions, just as I’d seen Soma Mukhopadhyay do.  (Despite the fact that Soma advised me NOT to ask any open-ended questions in the beginning.)  *Define beginning, I kept thinking.  I HAVE begun.  Surely now after the second or third day home I am beyond “beginning”!  This thinking is akin to seeing a master jeweler create a beautiful ring and expecting that I should be able to create that same ring without having spent years practicing the craft as a bench jeweler, or hearing a Rachmaninoff piano concerto played at Carnegie Hall and then going home and thinking after a couple of piano lessons that I would be able to replicate that piano concerto.  The point is, Soma is a master at RPM (rapid prompting method).  She’s been doing RPM for close to two decades, first with her son Tito and later with hundreds of Autistic people.

But I so wanted to have the kind of conversations with my daughter that I saw her having with Soma.  It was like catching a little glimpse of paradise, but not being able to find the bridge to actually get there.  I kept trying to leap.  I kept trying to find a short cut.  And as I did this, each day, my distress grew.  I felt frustrated and then angry and then beaten down.  All because I was expecting myself to be able to do something without any practice.  So when my suffering reached an all time high, when the occasional weeping, became more than occasional and my son, upon seeing me asked, “why are you always crying?” I realized I had to get help.  I did what years of recovery from addiction has taught me – I reached out to another human being.  I contacted someone I only know through the internet, but who has been working with her son for a number of years now.

She gave me wonderful tips.  She sent me videos to watch.  She listened to my distress.  She told me it took months of practice and as I read everything she sent me, I kept thinking both how grateful I was to her for being so kind and generous in sharing her experience with me, but also was reminded that I need to practice and I need to start at the beginning.  Everything takes practice.  My expectations of myself were causing me tremendous pain.  They were unrealistic.  It isn’t that I can’t do this method with my child, it’s that I can, but I need to practice.  And as I realized this, as I thought more about this, I saw the parallels to presuming competence in my child.  I have written about what “presume competence” means, but in all the posts I’ve written on the topic there is one piece of this that I have neglected to mention and that is, presuming that we can and will be able to learn with appropriate accommodations and enough practice.  I forgot to include myself in presuming competence.  I need that presumption too.  I need to remember that I can and do learn if I’m given instruction and give myself the opportunity and time to practice.

I had the proper instruction, but I haven’t been practicing long enough to get the results I wanted.  So last night I wrote up a lesson plan, just as Soma had instructed during a previous four-day intensive workshop I took last spring.  I made sure I followed her format of how to create a lesson plan.  I made sure I began with choices and spelling key words.  I even tried to embody her lovely, sing-song, calm, kind voice.  I laid aside any expectations of what would or should happen.  And you know what?  It was a great session.  I made a couple of mistakes, I had to refer to my notes often.  I had to make some adjustments.  I forgot a couple of key things, but I jotted down some comments to myself so I can remember to revise accordingly for our next session this afternoon and more importantly, we were both more relaxed than we have been since we returned home.

Practice.  I hate the idea of having to practice.  I want to go from never having done something, to immediate fluency.  But once I begin practicing and let go of that desire and those expectations for immediate fluency, practicing can be incredibly enjoyable.

To Sue:  This post is for you.  Thank you.

Em practices jumping on her pogo stick.  New all time record?   127.

Joy copy