Tag Archives: Parenting

Why Wretches And Jabberers Is Essential Viewing

Posted on May 23, 2013 | 7 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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Posted in Autism, Parenting, supported typing, Wretches and Jabberers

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Taking Action ~ Presuming Competence

Posted on May 22, 2013 | 10 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 working with Emma 

Soma & Em

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Posted in Autism, Parenting, presume competence

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“Proof” of Competence

Posted on May 15, 2013 | 40 Comments

Last night I asked Emma, “Do you want me to read Anne of Green Gables or something else?”  I was seated at the computer responding to a comment left on yesterday’s post.  Em was leaning over my shoulder looking at the computer screen.  She pointed and said, “Look!  There’s Harvey and Tracy and Pascal!”

“Yeah!  I’m just finishing up here, Em.  Did you brush your teeth?”

“Uh-huh,” she answered.  Her one hand gently rested on my shoulder, her head about an inch from mine, she twirled her string and continued to peer at the screen.

“So Em.  Should I read Anne of Green Gables?”

“Nah.”

“Oh!” I said, surprised.  Turning toward her, I looked at her, “What do you want me to read then?”

“This,” she said pointing to the screen.

“You want me to read the blog to you?”

“Yes,” she said.

I mentally scanned yesterday’s post, suddenly wondering if I’d written anything I would feel badly to have her read or hear.  And as I did so, I marveled that this was something I was having to be concerned about.  Several years ago, had someone cautioned me to be careful about what I wrote on this blog and gave the reason for their concern as one day my daughter would express an interest in reading it, I would have laughed and assumed the person did not understand my child.  The idea that my daughter would be interested in anything I wrote, let alone anything I wrote on a blog about autism was the LAST thing I was worried about.  And yet, last night, there I was, and not for the first time, rereading a post I’d written with a critical eye.  This says far more about me and my limitations in imagination, as Anne of Green Gables would say, than about my daughter who continues to surprise, astound and prove us wrong.

That my daughter continually “proves us wrong” is something I am working hard to change, because again, this says far more about me and my limited thinking than it does about her.  Why should she need to “prove” anything?  So many of the various therapies used for Autistic children spend an inordinate amount of time requiring our children to “prove themselves” to us.  Often, having done so, we then change the question or the format, suggesting that this is for their own good as they need to “generalize” the information.  We ask again, insist that the answer be given within a certain time frame, insist that it be given with specific wording or in a different format, as though their first answer wasn’t enough to convince us.  Who exactly is benefitting from these exercises?  We say we are doing this with their best interests in mind.  We tell ourselves we are “teaching” and this must be done in order for them to learn, but it seems to me, it is often the other way around.  It seems to me these exercises are done to convince the skeptics among us.

We do not treat our Autistic population as equals.  We do not presume Autistic people are competent, often we believe they are incompetent and ask that they prove to us their competence again and again.  We pity them and often their families too.  Organizations set on “helping” those who are Autistic discuss their work initiative programs, their mentoring programs, (almost always it is non Autistic people mentoring those who are Autistic) yet fail to see how their well-meaning programs are biased, do not presume the competence of those they suggest they want to help, do not include Autistic people in the planning and implementation of such programs and express shock when their various programs are met with resistance within the very population they say they are helping.

This is really at the crux of the most astonishing thing I’m learning.  It is not that my child is limited.  It is that I and others like me have been limited in our thinking about her and those like her.  It is this, that I hope I will see change in my lifetime.

“Read the blog,” Emma stated as she crawled into bed last night.

And so I did.

Nic and Em ~April, 2013

Nic & Em

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Posted in Autism, Parenting, presume competence

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Parenting & Presuming Competence

Posted on May 14, 2013 | 68 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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Posted in Autism, Parenting, presume competence

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The Magic of Connection

Posted on May 10, 2013 | 40 Comments

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

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Posted in Autism, Parenting, Stem Cells

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Having it All Often Means Doing it All

Posted on May 9, 2013 | 25 Comments

*The title of this post is said in a joking, not exactly sarcastic way, but certainly not in a serious way.  Throw in an eye roll as you read and a knowing grin, and you’ll get it!

So much to tell you, but where to begin?

For Mother’s Day my wonderful husband decided he would interview me on his radio show and asked if I wanted to invite a couple other moms to come on  the show too.   “Yes, please!” I said and promptly invited my friends, Ibby Grace of the blog Tiny Grace Notes (AKA Ask an Autistic), Paula Durbin-Westby, who has two blogs, one with her name as its title and the other – Autism Acceptance Day (which is a terrific resource filled with interviews among other things) and Lauri Swann Hunt of the fabulous website and blog Ollibean, where both her son Henry and Amy Sequenzia often post among many other wonderful writers.  The show aired last night at 8:30PM – 10:00PM Eastern Daylight Savings Time and has been archived ‘here‘ for those who would like to listen.  We do not have a transcript of it yet, but my fabulous friend Alyssa of the blog, Yes, That Too, suggested we break it into ten minute chunks, which means we need eight more people to volunteer.   Anyone who is so inclined can contact me here or at emmashopeblog@gmail.com and we will get a transcript written!

I meant to write a post about all of this yesterday so anyone who wanted to listen live, could, but Richard came down with some sort of stomach bug that kept him up for the better part of the night and Em woke up in the middle of the night complaining of a sore throat.  When I went to her she was burning up, so I stayed with her for the rest of the night.   By yesterday morning, which was also the first day of my “play date with jewelry” trunk show, I realized, I was not going to be able to keep all the necessary balls in the air.  It was that moment when you realize the reality and what you had envisioned, were not meshing even remotely and so priorities needed to be set.  Nic, who was off early to go on a three-day field trip, made it out the door without mishap.  A doctor’s appointment for Em was secured. Joe, Em’s devoted, dedicated and all around amazing therapist, was called in for reinforcements. Richard was checked in on and given liquids between preparations for my trunk show.

By the way, the show continues today, for those who might be interested in playing with jewelry and seeing my Transitions Collection, which I’ve finally gotten up on my Ariane Zurcher Jewelry website, and joining me to play with the real thing and so I can give a live demonstration of all the various possibilities, many of which the website does not yet have or do.

AZ jpg evite

So given that the day was not proceeding as optimally as planned, it was kind of fitting and perfect that Richard, albeit, groggily, insisted that the radio show (dedicated to motherhood and all that entails) must go on as planned!  So it did. And other than a couple of minutes when Richard and I were inexplicably tossed out of the show, it was great fun, everyone was wonderful and I think Paula Durbin-Westby may need to seriously consider hosting her own radio show in the foreseeable future!  As I said at the end of the show, it is these Moms and women like them, who have helped me be a better mother to both my children.  I am so lucky and very, very grateful.

Merlin Assists in Preparing for the Trunk Show

Merlin:Jewelry 

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Posted in Autism, Autism Acceptance, Parenting

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The Mean Voice

Posted on May 7, 2013 | 22 Comments

I have struggled with a mean voice in my head my entire life.  ”You messed up,” “You can’t do anything right,” “You’re a failure”, “What were you thinking?” “Why did you do/say/think that?”  ”How could you not have known?”  When I was young I thought I was the only one who had it.  I believed the voice.  I thought it spoke the truth.  I felt crushed by it.  It was a condemning voice and I thought it would help me become a better person if I listened to it.  I was wrong about that.  These days I don’t allow myself to believe it, but now and then I can’t help myself and those are the days when everything is harder.  Those are the days when the people I love will suffer because that voice isn’t content to stay internal for long.  No matter how hard I try, no matter how much I tell myself I’m not going to repeat those hurtful words to someone else, I end up doing so because self-hatred is never kept completely contained.  Those of us who struggle with self loathing tend to hurt others a great deal, which then feeds our self-loathing.

“Self knowledge avails us nothing.”  ~ Big Book of Alcoholics Anonymous.

Awareness, acceptance, action.  These are the steps I know to take if I want to change my behavior.  These are the things I must do on a daily basis, sometimes hour by hour.  These are the things I stumble over, like giant boulders in my path.  Someone else yelling at me to stop listening to the voices does NOT help.  Someone else scolding me for having hurtful voices in my head only ADDS to my stress and the noise, it does not lessen it.  Awareness – I have to acknowledge I’m listening to the cruel voice.  Acceptance – I have to accept I’m in a dark place, that this is what is going on, that this is my reality in this moment, without judgement, without condemnation.  Breathe.   Action – this is the most difficult piece.  What actions can I take now that I’ve become aware and have accepted that this is where I am?  Often action has nothing to do with any of it.  For me action works best in the form of a small or big act of kindness. If I’m in self-pity or when I have tremendous ego, an anonymous act of kindness is by far the most helpful and centering thing I can do.

Feel the pain of the moment but do not be controlled by it.  Feel the anger/irritation/impatience, but do not allow it to take the lead.  Can I do this?  Can I just allow myself to be?  Can I reach out with love instead of anger?  If the answer in this moment is no, then can I just be silent, without turning my anger and frustration inward?  Can I just do nothing at all until this passes?  These things are easy to write about, but so much harder to practice.  And yet I must continue to pick myself up when I fall and practice what does not come naturally or easily because that other road is one I have been down.  I already know where it leads.

For an expanded upon and wonderful post on the mean voice please visit: hereirawr’s Balance Isn’t a Destination and Gray IS Gorgeous!

Road to hell

 

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Posted in Addiction, Marriage, Parenting

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Where There’s Anger There’s Fear

Posted on May 6, 2013 | 18 Comments

It’s taken me decades to figure out that whenever I am angry, fear is lurking.  All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate.  It’s still not the first thought I have when I am angry about something.  It’s not even the second thought.  In fact, I’m lucky if it’s something I can remember at all when I’m angry.  Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were.  But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go.  It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat  your mind generates fear and anger.  The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat.  What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph.  In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined.  What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing.  The way to overcome anger is to change  how the mind imagines stories and how much you believe them.  When the mind imagines painful scenarios you naturally produce anger.  To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened.  I had to change the story that my mind was imagining.  Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch.  I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one.  I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant.  I had to be open to other ideas about it.

For me that began with reading books.  First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog.  From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships.  People I have grown to love deeply.  I had to find people who were non-speaking, or spoke intermittently.  I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people.  And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities.  The very things I had been told could not, would not be possible for my child.

“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning 

A and E_2185And so I found I had a choice.  I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up.  Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice.  I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it.  Because my fear has me running away and my anger has me shouting, either action keeps me apart from others.  I have learned that the answer to both is to do something else.  And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

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Posted in Autism, Autism "Awareness", Autism Acceptance

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Rethinking Unhappiness

Posted on May 3, 2013 | 42 Comments

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

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Posted in Autism, Parenting, presume competence

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Love

Posted on May 1, 2013 | 12 Comments

For those who missed the fun, yesterday was the #AutismPositivity2013 Flashblog where people sent in thoughts about the theme “1,000 Ausome Things” in an effort to counter at least some of the ongoing negativity surrounding autism and those who are autistic.  All the posts have been compiled ‘here‘.  I helped tweet, share, google+ and pinned the posts as they came flooding in and WOW!  It was exhilarating to read so many words written by Autistic people, young and not so young, non-autistic parents, Autistic parents, siblings, cousins, educators and everything in between.  There were bullet points, numerical lists, stories, photos and even a couple of videos!

It was wonderful to see so many coming together over a shared idea.  A moment when the common goal was to rejoice.  A tiny moment when it wasn’t about anything other than what was AUSOME about a neurology we have come to call autism.  And it reminded me of something.  It reminded me of a time in my marriage when a therapist suggested Richard and I make a note every night, not of all that was wrong, or a list of our grievances, but a list of all the other had done right.  A list of all that was ‘good’.  These are subjective words, but we understood the goal was to look for the positive in the other.  And guess what?  It was the single best advice anyone ever gave us!  When we concentrated on that which the other was doing that was kind, took notice of the little gesture made, the loving glance, the dish that was put away, the trip to the store for the milk that no one had remembered to buy, all those little acts each person did, when those were noticed, they added up to something bigger.  They added up to an expression of love neither of us could have voiced.

That’s what yesterday’s Flashblog was about…  love.  Self love, love of another, hundreds of voices expressing love.

This image was created by the very talented Lori Miller Degtiarev of the blog A Quiet Week

Lori Miller Degtiarev

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