Tag Archives: presuming competence

The Impact of Believing in Incapability

Posted on February 3, 2015 by | 28 comments

Ariane:  What should we start our day with?  German, a blog post, general writing, fiction, poetry or something else?

Emma:  Just start with blog post.

A:  What would you like to post about this morning?

Emma:  How about the topic:  Knowing many things, but having no one believe you are able to understand.

Ariane:  This is a great topic!  Do you want me to say anything or keep quiet so you can continue?

Emma:  I will continue.

For many years this was the title of my life.  It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of.  The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness.  Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.

Ariane:  Wow, Emma, that’s really beautiful.  What else?

Emma:  You can add commentary now.

Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…

I am always struck by Emma’s words.  It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over.  This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.

“Nonsensical searing memory words…”  I so want to know more about this.  Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center?  A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself?  I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct.  I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought.  I’ve written about these bridges before ‘here‘.  Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.

“… that no one understood the significance of.”  I will ask her about this later.  She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding.  “…beams of brilliant light shouting through the dreary darkness.”  Who among us does not want that feeling for those we love?  Is this not what love is?  Connection with another?

“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.”

Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand.  We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years.  Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning.  To say words, to write words only to be told you do not understand metaphor.  To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.

End of commentary.

Ariane:  What sort of image should we put with this post?

Emma:  How about a photo of the two of us.  Daddy can take it.

Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others.  What do you think?

Emma:  No.

Ariane:  Okay.  What would you like the title to be?

Emma:  The Impact of Believing in Incapability

February 3, 2015

February 3, 2015

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Posted in Autism, communication, Parenting

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Insights From a Non-Talker: Emma’s Conversation With A Friend

Posted on July 10, 2014 by | 14 comments

The following is a conversation Emma, Richard and I had with a friend of ours who works at a school.  (DF = dear friend)  I have paraphrased DF’s part of the conversation because a) I cannot type as quickly as she speaks and b) she was thinking out loud at certain points, so I just wrote the gist of what she was saying. All of Emma’s words are what she typed.  Both DF and Emma gave permission to have their words posted here.  As Emma wrote – “People need to understand.”

DF:  I’ve been thinking about your presentation (click ‘here‘ to watch Emma’s presentation) and the body/mind disconnect that you talked about during your presentation last week.  I was thinking about being respectful and making faces back at you and I know you’re smart, but I was afraid that if you can’t control your body and don’t mean to make faces, is it disrespectful to make faces back?

Emma:  Making faces is fun communication in my chosen language.

DF:  Is it also the same for the words you sometimes use?  So, if you’re saying a word like “peacock”, is it respectful to repeat it back and play with words that way?

Emma:  Playing in all ways is my favored way of interacting with people even when they don’t speak silly.

DF:  Sometimes I feel bad because I want to ask you questions because I want to know you better, but I don’t want to ask because I know how hard work it is for you to answer.

Emma:  Talkers always want words, as though everyone stated exactly what they meant.

Richard & Ariane:  (we both asked similar questions, but in different ways, this is a combined version of what we asked) Emma, I’m curious…  when you say “peacock” sometimes you are singing in an operatic voice, but other times you are saying the word over and over while also saying “peek-a-boo” so I’m wondering are you mimicking the bird or are you playing around with the words, “peek-a-boo”?

Instead of pointing to the “y” or “n” for yes or no, Emma pointed to the letter, “w”.  This led to a quick back and forth between us, talkers, about how Emma rarely just answers yes or no when given the opportunity to, but instead writes much more.  I even then joked to Emma, “Em, that was a yes or no question.  You can just hit “y” for yes or “n” for no!”

Emma:  Word play is joyful and I think obvious joy is had with both associations.  Decision to sing while thinking about birds with peek-a-boo tail  feathers brings happy feelings.

Ariane:  Oh my gosh, Emma!  That’s so amazing.  The tail feathers look like hundreds of eyes and they are only fanned out at particular times!  So this wasn’t a yes or no question after all!

We then discussed peacocks, their beautiful plumage and how we often thought we were asking a yes or no question, only to realize how wrong this assumption is.

DF:  Okay, so here’s a problem that many teachers have at school.  A lot of times kids your age or older have fascinations with things that talkers think are inappropriate.  Things like a teenager who likes Teletubbies or wants to carry around a stuffed animal or wants to talk about Thomas the Tank Engine.  We want to be respectful and treat that kid like a mature teenager, but we don’t feel comfortable talking about Teletubbies or Thomas the Tank Engine.

Emma:  This is their fear of indulging a mind that they suspect is simple, but someone who is known to be brilliant would be thought eccentric.

DF:  Should I defend their right to explore their interest in school?

Emma:  Yes, expressions are not threatening and harm none.

*Quick aside – using interests as the gateway to other academics is how many homeschool/unschool .

Richard:  In the past, while watching you type, you’ve made faces at me and I’ve made faces back and was told not to do that.  But I’ve seen you making faces and you still are able to type, should we feel free to make faces with you while you’re typing?

Emma:  This is a difficult answer because I prefer to make faces, but I know how much you want to talk.

R:  What I meant was, do you enjoy having someone make faces back while you’re typing or would you prefer they did not?

E:  I would love to just make faces and not type.

*Another quick aside – so this is the ongoing struggle of all parents it seems to me.  It’s those grey areas when we ask our children to do something, even when they may not always want to.  For us, we put boundaries around typing sessions, so there is a clear beginning, middle and end.  As with most parents, we hope our decision is the right one.

Ariane:  Talk to me about when you say to guests, “good-bye”.  Often you say it shortly after they’ve arrived, sometimes immediately after they’ve finished dinner.  You can clear the room in seconds because they think you want them to leave.  But do you want them to leave?

Emma:  Saying good-bye to some is because I think they need to go, but other times I am sad and say it because I don’t want them to leave.

*Emma then made a sad face and pretended to cry.

Richard:  That’s a good face to make when you’re sad that they must go!

DF, Richard and I circled back to DF’s question about students who have interests in things that the non-autistic educators deem not age appropriate.

Emma:  It’s hypocritical though, because I was often given very young books, more suited for a toddler.

 

I asked Emma what image she wanted with this post, she typed, "google - "talking" and then chose this.

I asked Emma what image she wanted with this post, she typed, “google – “talking” and then chose this.

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Silencing

Posted on June 6, 2014 by | 62 comments

“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

 

62 Comments

Posted in Autism, Parenting, RPM

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Dare to Hope

Posted on May 1, 2014 by | 35 comments

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

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Posted in Autism, Parenting, presume competence

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What We Would Have Done Differently

Posted on February 27, 2014 by | 40 comments

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

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Posted in Autism, Parenting, presume competence

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“Feeling knowledge…”

Posted on December 2, 2013 by | 28 comments

“Feeling knowledge is reality understood.”

This is what Emma wrote over the weekend.   Yeah.  I’ve been unraveling that one  ever since she wrote it…  At this point there are a couple of things I have come to realize:  First – if I can just keep up with her, I’m doing really well.  Second –  presuming competence is a vast concept and is much more about me and my limitations than it is about the person I’m applying this idea to.  And third – the amount we do not know about autism far surpasses that which we do.

“Feeling knowledge is reality understood.”

EmContemplatesNature copy

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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

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Having to Prove Competence

Posted on October 15, 2013 by | 30 comments

I have always feared being put somewhere against my will.  Sequestered, hospitalized, institutionalized, these are abject fears I have had since I was very young.  The idea that others would have control over what I did, where I went, what I ate, who I saw…  these are more than just fears, they are like nightmares, too horrible to contemplate.  My greatest fear when I went to see a therapist in my early twenties was that I would be put away somewhere, so sure was I that if my secrets were revealed I would be thought too damaged to live among my peers.  I made my therapist promise that if I told him what was on my mind he would never allow me to be admitted to a mental hospital.  It was after he assured me, swore he would honor my requests that I was able to finally begin telling the truth.

On Homeland (the Showtime series beginning its second season) there is a scene with the main character being committed to a mental institution, forced to take medication, her speech garbled and slowed, her facial expressions a slow motion blur of terror, rage and pain, her eyes wild, like a caged animal, while her intelligence burns bright.  The well-meaning staff speak to her as though she were a child, incapable of reason, they tell her to calm down.  They tell her to take deep breaths and count to ten.  They doubt her ability to make decisions, they speak to her in voices cloaked in a calm-like veneer, their irritation still bleeds out, their condescension is palpable, their dislike for this person who is inconveniencing them is still vividly apparent.

And I thought of all the people we have met who are like those well-meaning nurses and staff.  They do not view those who are neurologically different as equals, not really.  They believe they have proof of this.  They do not believe, even though they may say otherwise, that people who cannot speak or who do so intermittently  are competent, capable of insightful thoughts, or have anything of importance to say.  They alternate between ignoring the person, to speaking to them as though they were still a toddler.  They are visibly uncomfortable.  These are the people who have concluded that because someone cannot verbalize what they think candidly and with ease, they must not have anything of importance to say.  Thankfully most of the people we meet who are like this have not devoted their lives to working with this population.

But now and then I meet someone who has.  They believe they are doing a good thing, a noble thing.  They believe they are helping.  They believe that the people they are trying to help are living happier lives as a result.  They believe this with all their heart.  They give words, as though gifts, in grammatically correct sentences, believing people can be trained to say things and do things that will be understood by the majority of the population.  They think that if they can force someone to stop moving their hands or legs or twirling bits of string that the person will be better for it.  They do not consider that this may be detrimental, that these actions are necessary to their concentration, that they will actually learn more and be able to concentrate better if they are allowed to do these things that are seen as unusual.

As I watched Claire Danes in the role of Carrie Mathison, I felt that old familiar terror  I used to feel when I imagined if people knew me they would believe I needed to be put away somewhere and locked up.  I was reminded of all my old fears that who and what I was, was broken and needed to be fixed and that I was not like others who seemed so pulled together, so calm and happy.  On the show, Homeland, the more Carrie tries to convince the staff that she is fine and calm, the more out of control she appears.  Having to prove oneself as competent is a difficult, if not impossible thing to accomplish, if those you are trying to prove to, already have made up their minds to disbelieve.

Em types with Pascal

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Presuming Competence & Expectations

Posted on August 28, 2013 by | 22 comments

Presuming competence is not code for – my kid is a genius and capable of super human abilities.  (Though some may be, it’s not a given.)  One of the things I continue to struggle with is the idea of presuming competence.  Often I don’t go far enough and other times I go too far without meaning to.  I have made assumptions about my daughter’s ability or inability that are incorrect, or at least have been incorrect in that moment.  Whether I expect her to be able to do something that she cannot, or at least cannot do today, but may well be able to do at some point in the future or whether I do not expect her to do something that, it turns out, she is more than capable of, I am treating her as though I know one way or the other.  But the truth is, I don’t know and neither do a great many of the people who come into contact with her.

The best thing I know to do is to remain in the moment with an open mind.  Easy, right?  Yet I don’t think it’s easy at all.  I find staying present very, very difficult, which is why in Buddhism they call it a “practice”.   It takes practice to stay in the present.  It takes practice to remain solidly rooted in this moment without drifting off into some future scenario of what might happen, what should happen, what I want to have happen, what I fear will happen and then all the things I do to control all of that so everything I want will occur the way I want it to, in the time frame I want.  I’m exhausted just writing about this!

My daughter continues to astonish and amaze, just as my son does.  As both my children mature and come into their own, they do and say things on a daily basis that I find utterly delightful and incredible.  But that delight is tempered by expectations.  I know this, yet find it extremely difficult to keep my expectations in check.  My expectations often cause disappointment. I don’t like feeling disappointed, so I try to turn the volume down on my expectations, but if I keep my expectations in check then am I still presuming competence?  I can go around and around with all of this endlessly.  The only conclusion I have come to is that I’m not going to always get it right, but I’m going to do my best to stay aware, stay present and open to whatever happens without preconceived ideas of what should or shouldn’t happen and while I’m doing all of that, I’m going to remember to breathe.

Breathing is good.

 

A wild mushroom growing out of the side of a makeshift bridge – Colorado August, 2013Mushroom

 

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Posted in Autism, Parenting, presume competence

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Emma’s Story

Posted on July 23, 2013 by | 51 comments

Emma told me I could post her story on here this morning.  This is a story she wrote yesterday with Rosie (Rosemary Crossley).  Rosie developed a technique more than thirty years ago to help people with a variety of issues, specifically those that make speaking difficult or impossible .  Em held onto a tube with one hand while Rosie held the other end as Emma typed.  Rosie began yesterday’s session by asking Emma to write a story that began with either, “once upon a time” or “one day.”  I was standing near Emma, with Richard, Joe and Em’s teacher, Katie, all watching as she typed the following.

“One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.” 

Not sure I can actually continue writing here…  but I’m going to try… *Breathe*

I have read this story more than a dozen times already.  I know I’m totally biased, but I’m just going to say it – what an incredible story!  There are so many layers to it.  This story that Emma wrote with great concentration, with little pause is the first story she’s ever written.  She was focused and when asked about the word “flower” she verbally said “powder” in explanation.  Rosie explained that flower/flour are words that sound alike but are different in meaning.  Rosie explained that the powder kind is spelled “flour.”

But there’s more…  A little later Rosie brought out a math app called Math Magic where Emma proceeded to zip through addition, subtraction, multiplication and division.  None of this is particularly noteworthy, except that Emma has never been formerly taught division.  She was choosing the correct answers from a field of four.  A sample equation is:  “56 ÷ 8” and the multiple choices available were: 2, 9, 7, 6.  Emma chose the correct answers independently.    Allow me to say that again.  Division.  Emma chose the answers independently.

It was at this point that I felt so many things all at once it was almost impossible to speak.  But more than anything I kept thinking about how we continue to underestimate our daughter.  I had no idea she could do division.  Not only can she do division, she can do it quickly.  There’s another app Rosie recommended – Brain Pop and Brain Pop Jr. which Emma also did as we watched.  Not only did she listen to the short lesson, but then read all the questions silently, read the multiple choice answers and chose the correct answers.  It seems verbal speech is tricky, particularly when she is expected to answer questions verbally.  When asked to read silently and then identify the correct written statement by pointing to it, Emma did beautifully… about Ellis Island, no less!  The only interaction Rosie provided with both the math and Brain Bop was to use a laminated card that she silently moved across the words as Emma read and she did not allow Emma to point to any answer until she’d finished reading all the choices.

I cannot imagine how awful it must be to be so capable and yet treated as though you were not.  I imagine it must feel like being “bruised all over.” I imagine it must feel like you “fought a lot”.  My wish for my daughter is that she may continue to do all that she is doing, while we provide her with every opportunity to flourish and continue to show the world how very “clever” she is.  The only limitations are the ones we provide.

I am incredibly grateful to all who believe in her, all who have helped and who continue to help us so that we can be better parents to our daughter.  The list continues to grow…

Rosemary Crossley

Rosemary Crossley

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Posted in Autism, facilitated communication, supported typing

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Why Wretches And Jabberers Is Essential Viewing

Posted on May 23, 2013 by | 27 comments

Wretches and Jabberers.  I have written before about this documentary, but I’ve never fully explained why this movie had such a profound impact on me, on my thinking and subsequently on my family.  I will attempt to do that now.

I watched Wretches and Jabberers at the urging of my friend, Ibby last summer.  If a person’s life can be seen as a series of lights, indicating special influencers, Wretches and Jabberers was a beacon.   I knew nothing about supported typing, in fact, I’d never heard of it, so I watched in fascination as both Larry Bissonnette and Tracy Thresher (who are mostly non-speakers and Autistic) typed with their support persons, Pascal Cheng and Harvey Lavoy.  And I wondered whether my daughter might find communicating easier if she typed, instead of being expected to speak.

Larry is a painter, lives with his sister and was institutionalized as a teenager.  He shouts out things like “Bad boy!”  Tracy hits himself in the head when frustrated and has nowhere he can call “home”.  The documentary follows Larry and Tracy as they travel the world meeting other non speaking Autistics.  Again and again the viewer is shown a mostly non speaking Autistic person who has been deemed intellectually incapable by society, only to witness their intelligence and humor break through the silence by typing on a voice activated keyboard or iPad.  And again I thought about my daughter.

It is impossible to watch the film and believe these two men are isolated cases.  One cannot view this documentary and not question one’s preconceived beliefs about intelligence. The film defies the accepted and common non Autistic assumptions about Autism and what it means to be Autistic.  And for me, anyway, it made me question everything I thought I “knew” about my daughter.  All the things I had begun to question, whispering doubts about my thinking that I was no longer able to ignore because of the blogs I was reading written by Autistic people, were now amplified.

I have been interviewing Tracy Thresher for a piece I’m working on that I intend to submit to Huffingtion Post.  In answer to my question about what it meant to him making the film he wrote, “Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way.”

Later in my interview he wrote, “…my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.”

Once again I thought about my daughter and her difficulty with oral language and the frustration that causes her.

Wretches and Jabberers was like an enormous, day glo green, neon sign saying “follow me” on it.  Powerful, funny, poignant, Wretches and Jabberers is essential viewing for all human beings, not just those interested in Autism and parents of Autistic children.  It rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism, our children and what is and isn’t possible.  And if you are like me, you will think about your child and the world differently as a result of watching it.

One of my all time favorite photographs of Larry Bissonnette taking Emma’s photograph in Tampa, Florida ~ April 2013  (Amy Sequenzia is in the background)

Larry takes Em's photograph

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Taking Action ~ Presuming Competence

Posted on May 22, 2013 by | 16 comments

A full transcript of Richard’s Blog Talk Radio Show is now available for any who want it by clicking ‘Blog Talk Radio Transcript‘.  I am trying to add it to Facebook, but have run into problems as the file is too large to add to “notes” and I can’t add it even when changing it to either a txt file or an .htm file.  So unless someone knows how to attach a large file, (12,540 word count) I am not sure how to get this on Facebook.  I may need to break it into several smaller segments, which would be too bad.  Please advise!

Lots of people have been asking questions about “presuming competence” and how that applies to either their child or someone they are working with.  So I am adding links to a couple terrific articles that I’ve found helpful.

Kathie Snow, entitled: PRESUME COMPETENCE:  Challenging Conventional Wisdom About People with Disabilities.

An interview with Douglas Biklen, winner of the UNESCO/Emir Jaber al-Ahmad al-Jaber al-Sabah Prize to promote Quality Education for Persons with Intellectual Disabilities and Dean of the School of Education at Syracuse University.

Presume Competence – a PDF from the Peal Center

Presuming Competence ~ By Douglas Biklen and Jamie Burke (Jamie, who we met this past March, just graduated from college and types independently! Yay Jamie and congratulations!!)

I am just beginning on this road of “presuming competence”.  There are others who are far ahead of me, many of whom have been kind enough to email me privately with their experience, strength, wisdom and encouragement.  There are many of you who are directly affected by society’s inability to “presume competence” and all that means to you and your life.  Many of you I know, others I am just getting to know, some I don’t know, but hope to know, but all of you are living with the consequences of a society that does not believe in a basic right we should all have granted to us – a presumption of competence.

What follows is a list of things I try not to forget that have helped me presume competence, please add your own thoughts, as I am well aware many of you are further along than I am.  I am still learning!

*I hesitated publishing this post because I do not want anyone to take this as a lecture or that I think I have all the answers.  I don’t and it isn’t.  I made the decision to publish this because many people have contacted me privately asking for help in presuming competence.  These are the things I do and continue to do, tools really, that I’ve personally found helpful.

In order to presume competence I have to:

1)  Presuming Competence is a “practice”.  Much like anything I want to get really good at, I must practice this.  It is very much an action.

2)  Examine my preconceived notions about autism and what that means to my child.  For me I made a list.  Everything that comes to mind, no matter how awful I may feel about myself for thinking such things, I must “out” myself so that I can come face to face with ingrained beliefs, prejudices, things I assumed, but couldn’t know, fears… a full inventory of all that I once believed and may still believe about autism and Autistic people.  It is helpful to share this list privately with another trustworthy human being who will not judge or condemn.  By the way, this is not something I will ever share publicly.  None need see it as it would be hurtful to many and judged by others.  But for my progress it is important that I be able to admit these things so that I may change.

Once I have my list and I’ve confided in someone I trust, I must be willing to examine and dismantle any remaining destructive beliefs.

To do this I must ask myself:
How is this belief continuing to serve me?
What am I afraid of?
What do I think will happen if I let go of this thought?

I have to be willing to face my fears.  I have to be willing to honestly and without judgment acknowledge my own thinking.

3) Question everything.  Literally, question everything.  Do not take my word for any of this, try it yourself.

4)  Be curious, ask questions, seek advise from those who are ahead of you.  This has been key as there are many people who have been doing this much longer than I have.  Talk to them.  Many people are living with the results of being presumed incompetent.  Read what they are writing.  Listen to them, learn from them.

5)  When in doubt ask.  When in doubt don’t act.  Doing nothing is often far better than doing something or saying something that I’ll later regret.  If I am not sure how to proceed, it may be the least dangerous option to not continue until I can figure out how best to approach the situation.

6) We all make mistakes.  It’s okay.  It’s part of the human condition, no matter what our neurology.  I make mistakes all the time, so do my children.  It’s okay.  Keep moving forward.

7) If my daughter isn’t communicating in a way that I’m able to understand, I need to try a different method of communication.  All human beings seek connection.

8) I cannot and do not speak for either of my children, nor do I own them.  They are not extensions of me.  They are their own people, with their own unique personalities.  It is my job as their parent to encourage them and find the best ways to support them so they can flourish.  Any embarrassment, shame, fear or assumptions about who they should or shouldn’t be are mine.  They have little to do with my children as much as I may believe otherwise.  These are things I am responsible for working through privately.

9) Realize I don’t know.  There is just a great deal I don’t understand.  The only way I can hope to understand is by admitting that I don’t.  I don’t have all the answers.  I am learning.  My daughter is my best teacher.

10) Listen.  I have to be willing to listen to her.  I don’t mean just verbal language, I mean “listen” in a more holistic way.  Listen to every aspect of her.  What is she trying to tell me?  Often I will not immediately be able to understand.  Sometimes it may take years before I will, but it is more important that I continue to try even when I don’t understand than deciding she isn’t trying to tell me anything.

11) Patience.  This is one of the single most difficult things for me to practice.  I am, by my very nature, incredibly impatient.  Impatience serves me in some ways, but in approaching my children, impatience almost always hurts them and me more than it helps.  I have to “check my impatience at the door” as a friend of mine once said.  If I am unable to do that, it’s probably best if I take a break and come back when I’m able to.

This list is not complete… there are many more things to add… but they will have to wait for another day…

Soma Mukhopadhyay's First RPM session with Emma ~ 2013

Soma Mukhopadhyay’s First RPM session with Emma ~ 2013

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Parenting & Presuming Competence

Posted on May 14, 2013 by | 82 comments

I am reading Anne of Green Gables to Emma.  Three years ago it would not have occurred to me to read her a book that I might have enjoyed at her age.  Three years ago I was “reading” picture books to her before bed.  Three years ago I did not assume she understood the stories in those picture books.  Three years ago I not only did not assume my then eight year old child understood what I read, but I also did not assume she understood 90% of what was being said to her.   Because I did not assume she understood I treated her as though she couldn’t understand.  I treated her as though what I thought was a fact.  Then I learned I was wrong.   Not only did I learn my assumptions were incorrect, I began to see how those assumptions caused me to act and treat her as less capable than she actually was.  I treated her as though she couldn’t and I didn’t see how this attitude was hurting her.  Instead of teaching her to do things for herself, I did them for her.  It was quicker, easier…

I wrote a post not long ago ~ Presume Competence, What does that mean exactly?   People have a tough time with the idea of presuming competence,  let alone putting that idea into action.  I get that.  I did too.  Here was a child, my child, a child we had been told was capable of this, but not of that, a child who was treated by society as much younger than she actually was, a child who, because of her unreliable language did not have conversations with us, did not answer most of our questions, never asked us questions, and so we assumed had little if any interest in such things.  We made the mistake of assuming language retrieval issues were indicative of lack of intent and desire.  We made the mistake of limiting our thinking and therefore limited our child.  We thought we knew, until we didn’t.  We behaved as though what we thought was true and our behavior and actions or inactions fed into that erroneous thinking.

I’ve spoken a great deal about the brilliant documentary by Gerardine Wurzburg, Wretches and Jabberers.  I continue to urge everyone I know to watch it because it is the best illustration I know of, that explains the concept of presuming competence and what can happen as a direct result of doing so.  It is a highly entertaining, moving documentary following two (mostly) non-speaking Autistic men as they travel the world meeting other non-speaking Autistic people who are all far more capable than society believes.  Many are in “life skills” programs or work initiatives doing menial tasks like paper shredding and folding towels.  They type about their mind numbing boredom and brutal frustration they feel as a result of being treated as far less intelligent than they are.

Presuming competence is an act, it isn’t just an idea.  Presuming competence is the single most powerful action we have taken that has directly helped our daughter flourish and grow.  Nothing, absolutely nothing else we’ve done has helped Emma as much as presuming competence.  When we stopped limiting her with our limited beliefs of what she is or isn’t capable of and began giving her the information and materials she needed, she has taken off.  In school she is being taught grade level science, at home she is being taught grade level geography, I am reading age level fiction and nonfiction, she clears her own dishes, cleans them and puts them away.  She sorts her own laundry, helps fold it and knows how to make pancakes without assistance.  She takes a shower on her own, has learned to shampoo her hair and brush it afterwards.  She brushes and flosses her own teeth with minimal support, she dresses herself.  When it is clear she needs help learning to do something, we help her, without admonishment, without distress, but instead with the knowledge that she will eventually learn to do it on her own.

Presuming competence does not mean we expect her to know how to do something without support and instruction, it means we assume she can and will learn with appropriate accommodation.  This is is a very different way of thinking than either assuming she can’t do something and never teaching her, or teaching her, but requiring her to prove her knowledge over and over before moving on.  With reading comprehension we realized we were asking the wrong questions.  Often we were asking her to answer questions that were not obvious to the story.  When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.

In the beginning, presuming competence felt like a leap of faith.  It scared me.  I didn’t want to get my hopes up.  I didn’t want to feel the disappointment that I knew I’d feel if I was wrong.  It felt like a massive disconnect.  But presuming competence is not about my ego, my expectations or anything else involving me.  Presuming competence is about respecting my daughter and respecting her process.  It is about honoring her.  It is about giving her what she needs to flourish.  It is about dispensing with what I think, believe and have been told.  Presuming competence has nothing to do with my fears of success or failure.  Presuming competence is not about me at all.  It is all about my daughter.

Harvey, Tracy, Pascal & Em @ USFEmma takes the stages with Pascal, Tracy Thresher and Harvey

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