Tag Archives: autistic

A Tale: “Horses Will Never Fly”

Posted on November 21, 2013 by | 19 comments

This tale was written by Emma and she has generously agreed to allow me to share it here with all of you.  She will finish it at a later date since she was too tired to do so now.

“Horses Will Never Fly ~ By Emma

Long ago horses were mean animals.  If anyone tried to go near, they charged at them.  They had big wings and flew higher than eagles.

One day they flew around and caused so much wind that the dust began to fly.  Dust and sand covered big areas of earth, making deserts.  People and trees were buried below the dust.

Finally when they rested they saw their wings had begun to shed…”

Originally Emma ended this with “They stopped flying.  Horses will never fly.  The end.”  But once we returned to our hotel and discussed it more, Em said it wasn’t quite finished and promised to finish it later when she wasn’t so tired.  In addition, I added the punctuation with Emma’s approval.  As there is no way to punctuate from a stencil board it must be done afterwards.

These sessions are exhausting and she works so hard.   Her story reminded me of Rudyard Kipling’s Just So Stories that I loved as a child.  I cannot wait to read what Emma writes next!

Emma chose this image to accompany her tale from a search for “winged horses.”  It was attributed to redorbit.com

images

19 Comments

Posted in Autism, Parenting, Rapid Prompting Method

Tagged , , , , , , , ,

Emma’s Letter

Posted on November 20, 2013 by | 14 comments

Yesterday Soma (for more about Soma, RPM and the Halo Center please click on this link) spoke with Emma about ethanol, fuel and bio fuel, what happens to plants and animals when their bodies decompose, green house gasses, carbon dioxide, fossil fuels, how all of this can affect the economy, and finally Soma asked, “Suppose you are giving a speech at the UN.  What kind of speech would you give?”

Emma gave me permission to quote the speech she then wrote.

“Dear World,

Heat is important, but the world also needs snow.  We must think about the future and use fossil fuel wisely.

Personally, I like car rides, but I am going to walk more.  Walking is good for the heart.”

After we returned to our hotel, I told Em about her Grandpa who had to use a wheelchair when he could no longer walk.  We talked about other ways of getting around and how public transportation, particularly some of New York City’s older subway stations are inaccessible to those who use wheelchairs.  We discussed “green cities” and what that means.  We went to a website to look at photos of “15 Green Cities” and it turns out Austin, Texas is listed as the 15th.

I am too tired and do not have enough time to write more about our first day, and, as always, I need time to process all that has happened and is continuing to happen.

Every day I am being shown that what I believe it means to “presume competence” does not go nearly far enough.  Every. Single. Day.

S&E

 

14 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , , , ,

This is Autism (Written by Emma)

Posted on November 18, 2013 by | 61 comments

*A quick note on today’s flashblog ~ This is Autism.  In response to Suzanne Wright’s upsetting and fear-inducing letter entitled A Call for Action  a Flashblog has been organized to take back the phrase “this is autism”, which Suzanne Wright used several times in her letter that was posted on Autism Speaks’ website, the organization she and her husband Bob Wright created eight years ago.   Suzanne and Bob Wright and their organization’s beliefs are exactly what I hope my daughter never sees, hears or is confronted with, but that she feels the repercussions from on a daily basis.

I asked Emma if she wanted to write something for today’s post with the title, “This is Autism”.  She wrote that, yes, she did.  The following is what my daughter wrote, pointing to one letter at a time on a stencil board with a pencil.

This is Autism

Autism is anything.  

It is not bad,  

it is a mindset.

Autism is a method of energy,

it is how I think.

Autism is derided and except in some accepting eyes,

it is seen as not a nice thing,

but

it is me.

*Em

61 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , , , , ,

“Let Me Tell You…”

Posted on November 15, 2013 by | 33 comments

Emma gave me permission to tell all of you what she would invent were she an inventor.  *A little background – the quotes from Emma are what she spelled out by pointing to a letter, one letter at a time on a stenciled alphabet board.  No one touches Emma as she does this.  In fact there is no physical contact of any kind during the session, also known as an RPM (Rapid Prompting Method) session.

Emma has been doing RPM daily with me since the end of September.  Within the past two weeks she has begun to answer open-ended questions with me.  However the session I am going to write about was with someone who was trained by Soma Mukhopadhyay (the creator of RPM) and whom she is now seeing a couple of times a week.  This person, who I have not asked permission to print her name and so will refer to as B, has been doing RPM for a while now and as a result is able to move far more quickly into open-ended questions than I am.

In their previous session they had discussed train engines.  At the end of their session B asked Emma to think about what she might invent were she an inventor.  When Emma returned for her next session they began with the question, “What would you think was a really great thing to invent?”

Emma then replied, “Let me tell you that it is not a train engine.”

I have to interject here…   I love how ballsy my daughter is.  I love that she didn’t just answer with one word.  I love how audacious, cocky even her answer was… “Let me tell you…”  Emma spells words out, and I sit watching, literally on the edge of my chair, waiting, wondering what wonderful words will she write?  “Let me tell you…”  YES!  I cannot wait to hear what you have to say!!!!!

Emma continued, “It is more from the future…”

B urged her to tell us more.

“It is a spaceship.”

For all who know my husband this answer has brought a smile to your face.  For those of you who do not, let’s just say he has a particular fascination with spaceships, UFO sightings, etc.  He has logged in many an hour watching YouTube clips of various sightings.   As I sat watching my daughter spelling out these words I kept thinking how much Richard was going to LOVE hearing about this session.  But there’s more…

B encouraged Emma to continue, asking her to tell us more about the spaceship she would invent.

Emma spelled out, “Have you ever seen spaceships in New York?”

Sorry, I have to interject again.  This question… this question is wonderful and defies all that is commonly thought about so many of our kids who cannot verbalize questions like this.  For all those parents who have never had their child ask a question, for all who have bought into this idea of Autistic self involvement, of a lack of interest in others, this thought that our children who are non-speaking or unreliable speakers are “caught” or “lost” in some other world… to all of you, I suggest we rethink these ideas.  My daughter is not the only one writing things like this, she is one of many, many children, teenagers and adults who cannot voice their thoughts, but are writing them.  I have watched her, time and time again, asking questions; this kind of engaged conversing goes against everything we are taught and being told about non-speaking/unreliably speaking autistic people.  

B answered Emma’s question saying that she had not seen a spaceship in New York City.  She said she’d seen a great many different types of transportation in New York City, but never a spaceship, to which Emma then wrote, “You never have to wait to go anywhere.”

B then asked her how you could get a spaceship and Emma wrote, “You buy it on your own or you get a monthly pass.”  (In New York City most of us take advantage of the terrific subway system.  To use the subway you need a “Metrocard” which you can purchase for a single ride, multiple rides or for those who commute daily a monthly card of unlimited rides.)

B observed that as parking in New York City is already limited she wondered where a spaceship would go.  Emma wrote, “No parking needed.  Once they have landed they become invisible.”

B then asked her,  “How do you call for one?”

Emma wrote, “You have a button to press and it arrives right away.”

“Let me tell you…”

images

33 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , , , , , , ,

Facing the Skeptics

Posted on November 12, 2013 by | 27 comments

It’s snowing.  In New York City.  Right now.

“Look Daddy!  It’s snowing!”  Em said this morning.

There’s nothing particularly spectacular about that comment, except to us, it’s not only spectacular, it is exciting and yet another example of how my husband and I continue to underestimate our child.  (This is less a criticism of us and more a statement of fact to illustrate a larger point.)

“Em, do you know who the president of the United States is?”

“Yes,” she spelled out.

“What is our president’s name?”  I asked.

“Barak Obama,” she spelled.

“Do you know our vice president’s name?” I asked, thinking this might be taking things too far.

“Yes,” she spelled again.

“What is the name of our vice president?” I asked.

“Biden,” she wrote matter-of-factly.

“Communication is the most essential use to which spelling should be devoted.  It should not be used as a test or an exhibition piece.  Try being confined to a sentence a week and see h ow you feel about using that sentence to answer some stupid question about whether you live in St. Nicholas.  If Rosie had spent all her time giving tests we would not have had time to use spelling for our own communication.  Crushing the personalities of speechless individuals is very easy: just make it impossible for them to communicate freely.” ~ Anne McDonald from the book Annie’s Coming Out

This is what we are striving toward.  Annie’s comment here is one I have read and reread and yet find so difficult to apply because I am in a near constant state of disbelief when it comes to all that my child is capable of.  I write often about presuming competence, I write about how we dehumanize Autistic people with the language that is commonly used to describe them.  I write about how important it is to treat all people as equal.  I talk about human rights and how the rights of those who are Autistic, particularly those who do not speak reliably or at all, are dismissed, ignored or simply not acknowledged.  And yet I underestimate my child’s ability constantly and without meaning to.

On a daily basis she writes something that blows my mind.  EVERY DAY.  Read that again.  Every.  Single. Day.  It’s like living in an alternate universe.  Every day I feel excited to know what the day will bring.  Every day when I sit down with her I am prepared to feel that mixture of excitement, surprise and overwhelming gratitude.  Every day I think, will I ever stop being surprised?  How long will it take?  I don’t know.  But here’s what I do know – everyday I am overcome with emotion, respect and profound joy in  all that is my daughter.  I am sincerely grateful to read what she tells us, and grateful to all the people who have made it possible for her to do so.  Grateful doesn’t cover the emotions, but it’s the best I can do at the moment.

Yesterday in her *RPM session (follow this link to read more about RPM, which is not the same as FC or facilitated communication, though there is some overlap in that they both presume competence and treat the person with the respect most of us take for granted) she was asked, “What else has an engine?”

Emma spelled out, “Lets say leaf blower.”

My smile was like the Cheshire Cat’s, from ear to ear.  Leaf blower?  I LOVE that!  And later she asked for a clarifying question and then wrote a wonderful answer to a question about what changed once we began using automatic train engines.

“Until I could prove that they were intelligent nobody would come and assess them.  Guilty until proved innocent.  The children were profoundly and hopelessly retarded until they could prove they were intelligent.”  ~ Rosemary Crossley from  Annie’s Coming Out

“It was simply too threatening; my discovery questioned the basic assumptions on which care was offered…”  ~ Rosemary Crossley from Annie’s Coming Out

My daughter is one of hundreds of Autistic people who are writing and typing to communicate and in doing so she is proving every day how extremely gifted she is.  We are at the very beginning with all of this.   There are others who are far ahead of us, those who have published their thoughts, with more being published all the time.  Incredibly, what Rosie experienced, those deeply held prejudices back in the 1970s, continue to flourish today, now more than thirty years later.

“This was one of our standard problems:  people who doubted the children were always so sure of themselves that they openly expressed their skepticism in front of them.  It did not occur to them that if they were wrong they were terribly rude, and that they were making it very difficult for the children to respond to them.  How do you talk to someone who tells  you that they are convinced that you cannot talk?  What are they going to ‘hear’ when you try to talk?” ~ Rosemary Crossley from Annie’s Coming Out

We are living in a time when more and more parents, educators, people who work with Autistic people and Autistic people are facing the skeptics.  We are offering continued proof of our children’s and Autistic people’s intellectual gifts, indisputable evidence of all they are capable of.   My daughter is but one of a great many.  As long as she gives me her permission, I will continue to report some of what she is saying here while hoping that one day soon she, and others like her, will no longer be placed in  the insulting position of having to prove their vast intelligence, and themselves, to anyone.

Rosemary Crossley and Anne McDonald

Unknown

27 Comments

Posted in Autism, Autism Books, Autistic Blogs

Tagged , , , , , , , , , , , , ,

The Purple Tree

Posted on November 11, 2013 by | 28 comments

The Purple Tree and Other Poems is a collection of poems by Sydney Edmond who is non-speaking and autistic.  She learned how to write using a letter board when she was ten-years old, two years later she gave her first public presentation  and has presented at a number of other conferences since then.  Now ten years later, Sydney continues to write, present and is the subject of a documentary called, “My name is Sydney”

“Lazy, achy lady
lived by the sea.
Lazy, achy lady,
move away, please.

You are always blabbing,
talking long and loud.
You are closing in on
my lovely little cloud.” ~ From the poem, Some Early Poems

One of the most exciting things happening now is the emergence of a growing number of non-speaking Autistic people who are writing.  Thankfully self-publishing and blogs are making their work accessible to the public.  As more non-speaking Autistic people write and publish their work, it will become increasingly difficult for the public to deny that the assumptions we have long-held about Autistic people are incorrect.  Eventually we will have to re-evaluate how we are viewing those who are Autistic and what that actually means.  Our notions of “intellectual disability”, our ideas about what someone is or is not capable of are being challenged and will continue to be until what we think we know now, what is considered common knowledge will be seen as antiquated and our limited assumptions an example of just how ignorant we once were.

“I lack the lovely peace of mind,
lack my always smile.
Who listens to a lonely girl,
Listens to a child?”  ~ From Dear Friend

The first presentation Sydney gave was in 2005, just two years after she began communicating on a letter board.  This poem, Love, Love, Love! was part of her presentation at the West Coast Symposium on Facilitated Communication.

“But Soma came along
and changed my life.
She actually lifted poor little me
out of darkness
and into light,
love,
and lovable, lovable, lovely happiness.

Soma taught Mom
how to communicate with me,
and Mom and I have been talking
ever since.
Now I can choose my own clothes,
make my own decisions,
and make lovely friends out of people.”

For those of us with children who do not speak or whose language is unreliable, or does not necessarily reflect what is meant or intended, we are entering a time of tremendous hope.  There is a great deal of work still to be done, but in publicizing the work of those who are like our children, who are communicating by typing and pointing to letters on letter boards, we will shift how people view not only our children, but all our children and people.  By questioning commonly held beliefs about any one group of people we affect change for all mankind.

Unknown

28 Comments

Posted in Autism, communication, Education

Tagged , , , , , , , , , , ,

“It’s Good to Be Heard”

Posted on November 7, 2013 by | 30 comments

“It’s good to be heard”

These are the words my daughter spelled out yesterday during an RPM session.  She wrote some other wonderful things too, but I don’t have her permission to print them here.

“It’s good to be heard”

Imagine a life where it was not a given that what you said would be listened to, or even understood.  Imagine if you said things you didn’t mean or that people couldn’t follow the meaning and so you were dismissed.  Imagine being treated “like a three-year old” (this was something else my daughter wrote last week) by people who do not understand, cannot understand, are incapable of understanding because it flies directly in the face of all they’ve been taught and know.  My daughter does not have the mind of a three-year old, despite what anyone else may think or assume.

“It’s good to be heard”

Thanks to a number of dedicated people who have devoted their lives to figuring out alternate ways for people to communicate who cannot or do not reliably speak, my daughter is communicating with us.  Much to our surprise she has managed to learn an enormous amount despite the fact that she has spent years of her life in little more than holding tanks, i.e. special education schools where “life skills” classes are lauded as progressive, where verbal speech is seen as the only true barometer by which intelligence can be gauged.

“It’s good to be heard”

RPM copy

30 Comments

Posted in Autism, Parenting, Rapid Prompting Method

Tagged , , , , , , , ,

Controversy and Commenting

Posted on November 6, 2013 by | 67 comments

Yesterday I quoted Ido Kedar, whose book, Ido in Autismland is his account of what it’s like for him as a non-speaking, Autistic, teenager.  The quotes I used were specifically about his experience with ABA, the acronym for Applied Behavior Analysis.  (Ido also has a blog of the same name.)   A couple of people accused me of “falsehoods” and spreading “inaccurate information”.  One person wrote, “I have never read so falsehoods in one post in my life.  You clearly have zero understanding of ABA or the methods used in its approach.”  Except that the bulk of the post he was objecting to was made up of quotations from Ido’s book about his experiences as an autistic person.

I asked for clarification and was told, “Falsehoods being projected do not need to come as a quote from you directly. This is your blog and you are the one responsible for providing accurate information. If you are going to show a quote from a student, then maybe you should also factor in that the particular therapist the student had was not a very skilled one or a qualified one at that.”  Except to make such a claim that “this particular therapist was not skilled or qualified” would be inaccurate and something I cannot possibly know as I’ve never met the therapist being referred to.  Evidently telling a lie is acceptable if it’s done so in favor of another’s opinion, however quoting someone’s firsthand experience is reason to be accused of creating falsehoods.

Another commenter wrote, ” The posts regarding ABA on this blog are grossly inaccurate. Unfortunately, the author of this post (and subsequent commentary) are so misinformed on the topic that they are not able to recognize exactly how inaccurate the information is. For those of us who understand the field, this can certainly be frustrating.”  Except that so many being referred to and who were commenting are Autistic.  In fact a couple of those who commented yesterday are teachers and work directly with Autistic children, one is a professor and teaches disability studies to special education educators at the university level.  These are a few of the people this commenter believes to be “misinformed” and even went so far as to scold, “I urge you to become better informed on the topic.”  It would have been comical had it not been so upsetting to read the condescending tone and level of rage this one post and comments inspired.

I’d like to clarify a few things…  Let’s take ABA out of this, I do not care what the “therapy” is being called, if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support.  If a therapy is meant to teach compliance, teach someone whose neurology and sensory issues do not make sitting still simple or easy, who cannot listen, attend and make eye contact all at the same time, I question it’s objectives.  If a therapy is looking to “fix” another’s neurology, make that person “indistinguishable from their same age neurologically different peers” I will continue to speak out against it and will encourage others to do the same. If the therapy in question does not presume competence at its core and does not take into account the person’s specific neurology and sensory issues, it is flawed.  If these ideas are threatening to some, so be it.

So let’s stop talking about ABA specifically, because it seems to me the conversation continues to get derailed about what ABA is or isn’t, how some practice it or do not, how it has or has not evolved, instead, let’s discuss these other concepts.  And if you believe something that goes against what I’ve just said, fine, quote me in the comments section, tell me why you disagree, back up your ideas with examples, preferably with words from Autistic people and I will happily listen.  Accusing me of “falsehoods”, “inaccuracy”, being condescending, lashing out and making personal attacks are not comments I will allow through moderation.

Colin sent me this graphic, something I think we can all relate to…

923025_522914117804644_1130511149_n

67 Comments

Posted in ABA, Autism, Parenting

Tagged , , , , , , , ,

The Way We Treat Others

Posted on November 4, 2013 by | 39 comments

There is no other life than this one.  It doesn’t matter what one believes regarding death and the after life, this is the one life we have, right here, right now.  How will we live it?  What we do, what we say, how we behave in this moment is indicative of how we do anything.

I’m reading Rosemary Crossley’s first book, Annie’s Coming Out, which she wrote with Anne McDonald and was made into a movie in the 80’s, released in the US under the title, “A Test of Love.”   (As a side note, I find it interesting that the book’s title places Annie as the protagonist and yet the US film title suggests the therapist is.  By the way, I’m one of the people who believes both Anne and Rosemary were/are heroic and have nothing but tremendous respect for both.)

“Children, even children who could sit up, were generally laid down to be fed.  Their heads would rest in the nurse’s lap, and their bodies would lie across another chair placed in front of her knees.  This meant children were being fed with their heads tilted right back, a method called, for obvious reasons, ‘bird feeding’: gravity drops the food straight to the back of the throat, and there is no chance to chew.  Children were encouraged not to shut their mouths – a second mouthful immediately followed the first.  I have filmed a nurse feeding a child:  food is piling high on his face because he is unable to swallow it at the rate the nurse spoons it in.”  ~  Annie’s Coming Out by Rosemary Crossley and Anne McDonald

The above is, but one of many harrowing passages in the book describing the institution Anne McDonald was placed in when she was three years old.

“To be imprisoned inside one’s own body is dreadful.  To be confined in an institution for the profoundly retarded does not crush you in the same way; it just removes all hope.”  ~ Anne McDonald in the book Annie’s Coming Out

It is impossible to read this book and not feel horror.  Horror at our ignorance, horror that a place like St. Nicholas Hospital was more the norm than not, horror for all we didn’t understand or know, horror for our capacity as human beings to treat one another with such indifference and cruelty.  It is easy to console oneself with the thought that this happened more than thirty years ago and this sort of thing would never happen now, not here in the United States, not now.

This article in the NYTimes was written just last year, I wrote about it and other atrocities ‘here‘.

How will we view the “treatments” commonly used with Autistic children thirty, forty years from now?  What will we think about the commonly held views regarding autism and Autistic people.  Will we look back with the same horror I feel as I read Annie’s Coming Out?

Anne McDonald and Rosemary Crossley

Anne-Mcdonald2-200x0

39 Comments

Posted in Autism, Autism "Awareness", Autism Books

Tagged , , , , , , , ,

Autism is Not Like Cancer

Posted on October 31, 2013 by | 32 comments

I’m traveling and haven’t had time to blog.  But a couple of comments came in on the last post about How We Discuss Our Children that made me think a bit more about all of this.

When my daughter was first diagnosed we were told a great many things that frightened us as well as some things that were very encouraging, but when those, seemingly “good” things did not come to pass, we became even more frightened. In part because it became clear no one actually knew what they were talking about and coupled with that realization was the idea that if they didn’t know what they were talking about, how were we going to help our child?  Add to that our expectations, no one talked with us about any “positive” aspects of the diagnosis, nor did anyone suggest anything that sounded remotely “good”.  All of this was done with good intentions, lots of well-meaning advice, but all of it came from non autistic people who were operating under the assumption that our neurology was the gold standard and one that everyone should aspire to, as if that were possible.

Autism was framed in the “disease” model with people alluding to cancer as an appropriate analogy. As I have family who have both died and survived cancer, and have witnessed what chemotherapy does to a person, both when it works and does not, this was particularly awful as I took it literally and began to see any and all “treatments” as a kind of “chemotherapy”.  I even consoled myself with the idea that this “risky” treatment would all be worth it, if it “saved my child’s life”.  I spoke of it in this way and thought of autism as “life threatening” because I could not imagine a life without language, friendships, empathy, etc and this was what we were being told autism was.  This is an incredibly dangerous idea for any of us to engage in and is why I find it incredibly unethical for organizations and public figures to talk about autism and Autistic people in this way.

Now add to this the financial toll of all those unverified “treatments”, the appointments, dealing with schools and the general anxieties that come with parenting on too little sleep and too much caffeine, along with a parent who has expectations that something she does will “save her child’s life”, and that’s a pretty great recipe for discontent, depression, anxiety and upset.  Particularly when it becomes increasingly clear that there is little available that will actually prove helpful to our kids.

Think of how different it would be if our pediatrician was a non-speaking Autistic person and our non autistic older child had a couple of Autistic teachers and another kid’s parent was Autistic and one of our closest friends happened to be Autistic and Autistic kids were not segregated out of schools and work places accommodated their neurology and made it easier for Autistic people to be among us.  Part of that initial fear we parents often have is because we have never met anyone who is Autistic.  All the information we then receive is taken as fact and not questioned immediately.

So yeah, there are things that really do need to be addressed and changed because the stress of parenting is massively exacerbated by society’s use of the medical model and because of the way we have segregated those who are Autistic. It isn’t that a child who has all kinds of medical issues and co-occurring diagnoses will not be cause for concern, it is that to add to these concerns the – oh-and-by-the-way, autism-is-an-epidemic-that-is-analogous-to-cancer-try-anything-and-everything-to-erradicate-it, is increasing everyone’s pain and suffering, including our children’s.

32 Comments

Posted in Autism, inclusion, Parenting

Tagged , , , , , ,

How We Discuss Our Children

Posted on October 28, 2013 by | 73 comments

Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child.  They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown.  They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten.  They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off.  Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”.   We are accused of diminishing or dismissing the suffering other parents experience.

When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail.  Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote.  I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see.  It did not occur to me to ask her.  Literally, it did not occur to me.  These are things I now am aware of.  Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.

It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering.  It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight.  So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc.  It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.

In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.”  This was the thing that changed everything for me.  Realizing that there is a person there.  Right there.  Right here.  Right in front of me.  And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her.  She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.  

This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…

Em on her pogo stick copy

73 Comments

Posted in Autism, communication, Parenting

Tagged , , , , , , , , , ,

My Resistance to Practice

Posted on October 24, 2013 by | 24 comments

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

24 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , , , , , ,

Sparrow Rose Jones’ E-Book

Posted on October 22, 2013 by | 14 comments

Sparrow Rose Jones wrote an e-book No You Don’t: Essays From an Unstrange Mind that is now available on Amazon.  The title comes from a powerful essay she wrote on her blog – Unstrange Mind –  in response to the many parents who have told her how they would like nothing more than to have their autistic child grow up to be like her.  Sparrow writes:

“I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer.  Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility.  Or maybe they’re just baffled.  But sometimes they even got angry so I finally learned that I should answer, “thank you.  That’s very kind of you to say.”  Reinforced behavior — reinforced by social censure if I dare give the wrong response.”

Sparrow writes,

“… what I wish to come from this book:  a recognition of the shared humanity we all enjoy and a sense of connection among people coming together across a wide gap of experiential realities.”

And again from the essay – No, You Don’t:

“… they think, “my child is non-verbal.  My child goes to school and crawls around on the floor, meowing like a cat.  My child still wears diapers while all her same age peers have been toilet trained.  My child bites and hits people.  My child bites and hits herself.” And so on.

“Then they hear that I was many of those things, myself.  I was kicked out of the classroom for crawling on the floor and hiding under the tables.  My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom.”

Further along she writes:

“I was raped.  I was abused — domestically and otherwise.  I was molested.  I was taken sexual advantage of.  I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it.  I want you to teach your children to value themselves and I want you to teach them to own their bodies.”

Sparrow writes about how she lives in “crushing poverty”, how she has spent a great deal of time homeless, couldn’t keep a job,and was “unable to consistently keep a roof over my head or food to eat.”

In her follow-up to her No, You Don’t essay she writes about the response she received because of it.  “There was a small group of people, though, who read my essay and became angry.”  She describes how she was attacked by parents of autistic children, “I felt like I was being punished for writing and all that compliance training kicked in as a result.  I closed down my blog.  I became physically ill from the stress and shame and ended up in the emergency room more than once as a result.”

The next essay is called “Bullies, Bullying, and the Struggle to Speak My Heart”.  The first sentence of that essay is:

“Bullies have been one of the most constant things in my life.”

Sparrow writes:

“An Autistic kid who is behaving in a violent manner is an Autistic kid who is seriously suffering on a daily basis and needs a lot of help.  And being able to speak doesn’t always mean that a kid will be able to tell you what is wrong.”

There are too many wonderful essays in this e-book to quote in one short post.  Sparrow writes honestly with tremendous compassion for all of us.  She ends her beautiful collection of essays with this:

“May my journey of self-discovery inspire you to journeys of your own.  Where there is life, there is hope.  Autistic lives do not always look the way you might expect or hope they would look, but you must keep a sharp eye out for the tender flowers as you travel and you must understand that Autistics often bloom in surprising and exquisite ways.  Don’t try to shape us to your garden or we may wilt.  Enjoy and foster our own, unique beauty in all its fierce wildness and you will find your heart and your truest reward there.”

No You Don't

14 Comments

Posted in Autism, Autism Books, Blogs By Autistics

Tagged , , , , , , , , , , , ,

Humanity

Posted on October 21, 2013 by | 12 comments

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin.  He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal.  A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around.  My father used to call me every Sunday.  We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses.  He would ask me about what I was working on.  He was tremendously supportive of my career.  I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed.  I would ask him how he was, but he would always answer, “I’m still here.”  I knew that I would have to call my mother to learn about his physical well-being  if I wanted anything more in depth.  He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was.  I wanted him to tell me the truth.  He said, “You want me to tell you about the constant pain I’m in?  You want me to tell you about how my bodily functions are slowing down and what that’s like?  Is that what you really want to know?”  I remember pausing for a second and feeling confused.  And then felt terrible for my hesitation.  What I really wanted was for him to be fine.  I wanted him to be happy and energetic and well.  I wanted him to feel good and he did not.  He did not feel happy and energetic.  He was in pain.  Physical and emotional pain and a lot of it.  At the time I wanted to be the one who would change his circumstances.  I wanted to be able to make him better.  I wanted to save him from his pain.  But I couldn’t.  I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain.  This is the price of our inhumanity.  I think how society and my past actions have done this to her.  All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior.  And I blame myself for having bought into this belief for so many years.  The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this.  So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to.  I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing.   While I do all that, I keep telling her and showing her that she is loved and of value.  She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is.  She has as much right to be in this world as anyone else.  She is equal to her peers not less.  Being indistinguishable is not a goal.

My daughter’s neurology is not inferior.  Those who believe this are wrong.  My daughter is no more inferior than I am.  She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier.  It is our inability to lessen her challenges that is at fault, not her neurology.  It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us.  We must never give up.  We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else.  We are not.  We are human.  Imperfect.  We need each other.  We need to push each other to do better.  We can do better.  We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop.  It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts. 

These posts brought to you by:

Powered by Linky Tools

Click here to enter your link and view this Linky Tools list…

12 Comments

Posted in Autism, human rights, Parenting

Tagged , , , , , , , , , ,

Non-Speaking With a Lot To Say

Posted on October 17, 2013 by | 44 comments

I am reading Ido in Autismland: Climbing out of Autism’s Prison by Ido Kedar.  This is another one of those MUST READ books.  Ido is a non-speaking Autistic teenager who learned to write his thoughts by pointing to a stencil board using Soma Mukhopadhyay‘s RPM method.  Ido now types on an iPad.  When I first received a copy of this book, I admit, I was put off by the subtitle.  You see, I was one of those people who once believed my daughter was trapped inside a prison that I called “autism” and for a long time I absolutely believed this.  This thinking led me to believe that if I could cure her, if I could remove her “autism” she would be released from its prison.  It was also this thinking that caused me to say how much I loved my daughter, but hated her autism.  Once I discovered blogs written by Autistic people I began to reassess these various beliefs and finally began to understand how my thinking was actually harming her.    I’ve written about some of this ‘here‘, ‘here‘ and ‘here‘.

But in reading Ido’s book and because I wrote directly to him and his mom about my initial reaction to the subtitle, I have come to understand that his reference to “prison” refers to being imprisoned in a body that does not obey what his mind wants, a mouth that does not say the words he wants to communicate and a society that perceives him as someone he is not.  But more importantly this is Ido’s story and is about the way he perceives autism as it relates to himself and what he has been through as a result. To not read this terrific book because of semantics or because Ido’s perception of autism as “illness” is one I found unhelpful and even harmful to my family and daughter, would mean I would have missed reading a great book written by a really insightful and wise young man who had to fight against prejudices and preconceived ideas about who and what he was capable of.  This is Ido’s story and what a wonderful story it is!

In the introduction, Tracy Kedar, Ido’s mother, writes,

“The ideas in this book challenge many assumptions long held by professionals working with autistic people.  In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today.  If we had continued to rely on  the specialists and educators who dominated Ido’s early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated and hopeless.  It is time for our understanding of autism to undergo yet another paradigm shift, and Ido, along with other non-verbal autistic communicators, is a pivotal guide.”

*The use of bold is mine, used for emphasis and is not in the book.

Just as a quick aside, Soma’s RPM method begins with written choices, progresses to a stencil board with the student pointing to the desired letters with a pencil, then to a laminated alphabet board and eventually to an iPad and computer.  Soma or the person doing RPM does not come into physical contact with the student and once the student has moved to a laminated board, she even encourages the student to hold the board themselves.  The final step is to move from the laminated board to independently typing on an iPad or computer.

This quote was written by Ido in 2008 regarding his body and mind and how the two do not obey each other.

“Time after time people assume that I don’t understand simple words when they see me move wrong.  Understanding is not the problem.  It’s that my body finds its own route when my mind can’t find it.”

Again in 2008, Ido writes about his life before he learned to communicate using RPM.

“They misinterpreted my behavior often.  For example, I remember that during my ABA supervisions, I sometimes ran to the window over the parking lot in an attempt to show them that I wanted to go to my car.  They didn’t understand how a non-verbal person might be communicating.  Once, when I got really mad I urinated in my seat, but the supervisor just thought I couldn’t hold my bladder.

“But even worse was that they didn’t support me when I began to communicate.  Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods.  The response to everything was to give me drills.  If I had a dollar for every time I had to touch my nose, I’d be rich. I remember one day they realized that I hated being told to touch my nose, so they brilliantly switched the command to “touch your head.”  I felt like a prisoner of these theories and methods…”

“On Being Silent and Liberated from Silence”

“Can you imagine silence your entire life?  This silence includes writing, gestures, and non-verbal communication, so it is a total silence.  This is what a non-verbal autistic person deals with, forever.  Your hopes dim, yet you persevere in going to ABA or Floortime (play focused treatment for autism) or speech therapy, all to no avail.  The therapists can’t help and you despair, and only you know that your mind is intact.  This is a kind of hell, I am certain.

“The experts focused on stim management, or drills of rote activities, or silly play like finding things in Play Doh, over and over, on and on.  But they never taught me communication.  I shouted to them in my heart, “I need to communicate!”  They never listened to my plea.  It was silent.

“I could read from an early age.  I could write too, only my fingers were too clumsy to show it.  In school I sat through ABC tapes over and over and added 1+2=3 over and over.  It was a nightmare…”

Ido writes how when he was seven years old his mother supported his hand in an effort to have him help write invitations to his birthday party and how she could feel he was attempting to move his hand and in this way realized he could write.  But things did not immediately change.  No one believed him or his mother.

“My ABA team tried to convince my mom that she was wrong.  This hurt me so much because I thought they’d be happy for me and teach me how to communicate better.”

My daughter has asked that I read Ido’s book to her, so I am.  It has opened up a whole discussion about communication, what it means to not be given the tools to do so, what is autism, what it means to be autistic, being in a body that often does not do as one would like and what others believe as a result of actions you often have little if any control over.

Ido

44 Comments

Posted in Autism, Autism Books, communication

Tagged , , , , , , , , , , , , ,