Tag Archives: books

The Assumptions We Make

When I first heard the words “presume competence” I had no idea what that meant.  I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action.  I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway.  When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in.  I pretended I believed, even when I didn’t.  And when my energy was depleted I would not place demands on either of us.  If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.

In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her.  This was when Emma was eight years old.  I still remember the first book I read that wasn’t considered “young” for her age.  It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska.  After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia,  Little Women and on and on we went.

At first I was unsure whether she was even listening, let alone enjoying any of these books.  But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.”  Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading.  I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.

As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence.  There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish.  As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently.  There were times when I doubted what we were doing. There were times I didn’t believe.  There were times I wondered – what if we’re wrong about all of this.  What if what everyone says is true, really is?  What if?  What if?

In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage.   As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around.  It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not.  Often that thought was the only thought that kept me moving forward.  Sometimes one idea, just a single idea is all it takes.

To presume competence became a living amends and a way of life.  At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.

Emma and Balto ~ 2010

Emma and Balto ~ 2010

Michael Scott Monje Jr.

I want to introduce all of you to Michael Scott Monje Jr.  “Michael Scott Monje, Jr. is a graduate of Western Michigan University with an MFA in Creative Writing and a BA in English and Philosophy. He’s also autistic, a fact which everyone overlooked until he was in his late 20s.

Michael has a blog, Shaping Clay where he writes about a great many things including – Autism, Human Rights, Gender, and where his serial novel, Defiant can be read.

Mike’s novel The Mirror Project, a Sci-Fi psychological drama about artificial intelligence forces us to consider what happens when we create a being that cannot be “controlled” or forced to do as we bid.  There are moral and ethical implications, but more to the point, The Mirror Project is about oppression, our responsibility to not only each other, but to ourselves, and how we must relinquish the desire to control, in favor of encouraging and supporting one another’s independence, which in turn benefits the entire human race.

The artificial intelligence created is called Lynn, the name of the creator’s dead wife.

“Lynn’s existence is continuously dictated from without while she struggles to articulate the damage that her creators are doing to her.”

It was impossible for me to read this novel and not highlight the similarities between what Lynn ponders and what, I can only imagine, many who cannot easily access language or who have difficulty synching their mind with their body, must wonder.  Lynn asks early on “…what is the soul if it is not the constant awareness of the desolation of your own existence?”

Later Lynn protests the way she has been treated, “That attitude will open the door to all kinds of rationalized brutality on your part.  You might even break me and change my behavior permanently, but you will never be able to know that you did the right thing.  You’ll have to live with the idea that literally every experience I have for the rest of my life might be re-traumatizing me.  There’s no rationalizing that. You either refuse to create the situation in the first place, or you admit what you’re doing and accept the cost.  Could you accept the cost and live with yourself?”

Nothing’s Right is about a year in the life of an Autistic boy who must navigate the messy and painful maze of growing up in a family whose neurology differs from his own, a school that does not even attempt to understand him and a world where he is seen as the sum total of problematic behaviors.  Nothing’s Right has some of the most brilliant and haunting passages depicting “self-injurious behaviors” that I’ve ever read.

If you are not familiar with Michael Scott Monje Jr.’s writing, it is time you were.

You’re welcome.   🙂

The Mirror Project By Michael Scott Monje Jr.

The Mirror Project By Michael Scott Monje Jr.

Living Independently on the Autism Spectrum: by Lynne Soraya

Unknown-1Living Independently on the Autism Spectrum by Lynne Soraya is described as “What you need to know to move into a place of your own, succeed at work, start a relationship, stay safe.”  In fact, it’s a great deal more.  Lynne, who writes for Asperger’s Diary in Psychology Today and works for a Fortune 500 company, covers everything from proper conduct and attire at a job interview, what to do when stopped by the police, setting boundaries, career goals, work related issues and self advocacy.  My copy is filled with highlighted sections and notations, such as this quote regarding boundaries:

“The unfortunate reality for many on the spectrum is that the training that we receive to help us to “blend in” to the wider world can have the difficult side effect of teaching us to ignore our own boundaries.

“We learn to tolerate pain and discomfort of situations beyond what many others experience in order to appear more “normal” or to “fit in.”

In the margin I scribbled – “encourage a sense of self, listen, honor and respect.  Attempts to teach how to “fit in” ensures the opposite within one’s own self. Feelings of being a fraud.”

And this, in her chapter on safety:

“There are times when you will not want to make eye contact.  For example, for men, making eye contact while in the bathroom or at the urinal may be completely misunderstood.”

I wrote in the margin, “Privilege = never having to think about things like this.”  And, I would add, not only never thinking about something like this, but never having the thought occur to me to think about something like this.  Many of the things Lynne writes about are not only things I’ve never had to think about, they are things that have never even occurred to me to think about.

Another sentence I highlighted regarding encounters with law enforcement:

“If you are concerned as to how your body language or speech patterns may be perceived by the officer or first responder, let her know that you have autism and/or provide an autism information card.  Before you reach for the card, however, indicate to the officer either verbally or with gestures that you will be reaching into your pocket or wherever the card is located so that the officer will not think you are reaching for a weapon.”

And this about job interviews:

“However, the way many charities represent autism, mixed with our culture’s very simplistic understanding of what disability is all about, can be devastating to many of us who are seeking deeper inclusion in the world.  The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world.  Ability isn’t a binary thing.  Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.”

Throughout this book I thought about my daughter.  I thought about how, as she grows older, she may encounter, at least, some of these issues.  I thought about how she put music to a slide show of photographs on her computer last night and was so excited because I came in to watch it with her and told her how impressed I was.  I thought about how creative she is with language and how she comes up with ideas and ways of saying things that would never occur to me, I thought of her joy in music and how when she dances, she is without inhibitions or self-conscious thought.  I thought about society and how so many would suggest we “train” her to conform, fit in, and how, many believe, it is all for her own good.  And I thought about how I hope my daughter never feels she must betray herself to appease or please others.

Lynne’s thought-provoking and insightful book is available in paperback and on kindle at Amazon.

Books

When Emma was very young, she barely tolerated being read to.  Unlike her older neuro-typical brother, Nic, who requested certain favorites over and over again, only to be delighted when a new book was presented, Emma would take hold of a select few and flip rapidly through the pages.  It became apparent her interest was less about the book and more about the action of holding it and turning its pages.  During those early years, before we were given her diagnosis I remained baffled by her behavior.
We are a reading family.  Our home is filled with books on a wide variety of topics, fiction, non-fiction, poetry, memoirs, biography, it’s all there.  When Nic was born I looked forward to introducing him to the books, which captured my attention and imagination when I was a child.  We read to Nic every night and often still do.

When Emma was born, out came the now tattered edition of The Hungry Caterpillar, Brown Bear, Brown Bear, What do you see? Good Night Moon, its spine broken, held together with tape and hundreds of others.  But Emma would squirm in my lap, push the book away, whimper and struggle until eventually I let her go.  I was tenacious though and regularly took the children to Books of Wonder, the local bookstore where Nic promptly sat on the floor amidst a growing pile of books.

“Can I have this one?” he asked.  “And this one?”

Emma went to the bookshelves, scanned them and upon seeing a book she was familiar with would pull it down.  I don’t remember her ever pulling down a book we didn’t already own until she began going to preschool.  Then we would purchase one or maybe two books she knew from school and she would flip through the pages like some sort of speed-reader.  It was the same when she looked at photographs.  Not really seeing them, there was no studying the photo or in the case of a book, the illustration.  She methodically turned each page, seemingly without seeing.

Over the years Emma has shown a greater tolerance for the books we continue to try and entice her with.  She has learned to sit patiently with me while I read to her.  Sometimes she appears to even enjoy it.  When she likes a book after I have finished reading it to her, she will grab the book from me and say, “Emma’s turn!”

Over the past six months I’ve noticed Emma is much more curious about the books I proffer.  Now at night I typically choose one book Emma knows and has requested, at the moment her two favorites are Olivia Forms a Band and The Three Little Rigs, and several she’s never seen or expressed any desire in sitting through.  Within the past month I have read, The Cat in the Hat, McElligot’s Pool, Dr. Seuss’s Sleep Book, If I Ran The Zoo, Olivia Saves the Circus, Olivia and the Missing Toy, The Giving Tree, the list goes on.

When I was pregnant with Emma, I fantasized I would read to her and Nic at night the books I remember being read to by my mother.  Every Sunday night my father would take my brothers to the living room where he would read King Arthur and the Knights of the Round Table, The Hobbit, among others.  My fathers’ booming voice would make its way down the hallway into my parent’s room where my sister and I were lying on either side of my mother.  We would roll our eyes at each other and occasionally my sister would request that she be allowed to sit with our brothers and listen to whatever my father was reading.  Meanwhile my mother read:  Mary Poppins, Winnie the Pooh, and later books such as My Family and Other Animals.  I can still remember my heartbreak when a book came to a close. A few times I even cried when a book came to its conclusion because I could not stand it had come to an end.

That Emma is showing pleasure in being read to, fills me with joy.

Just one more small step forward…