Author Archives: arianezurcher

EEEEEEEEEEEEE!

Posted on December 6, 2012 | 73 comments

EEEEEEEEEE!!!!   (This is, but one, of many fabulous expressions I have come to love and use.  I first saw it used by my friend Paula and it made me happy.  I love that woman.)  What better way to express emotions that go far beyond “excitement”?  What words can possibly express joy and excitement and exuberance and that feeling when your throat constricts and tears flood your eyes and there’s that fluttering feeling in your chest that travels up and down as your vision blurs because of the tears?  Tears of joy.  Tears of overwhelming emotion that are impossible to express, that makes it difficult to breathe.  I don’t know of anything I could write here that would sum up what I am feeling.  EEEEEEEEEEEEEEEEEEE!   ⇐ comes the closest.

Yesterday was our second session with Pascal who is a trained facilitator of more than two decades.  Our first session I described ‘here‘.  Yesterday’s session took place over Skype.  It took us a while to get connected and once we did our connection kept going out on us.  At one point during a particularly exciting moment with Emma I squealed in delight, looked over to see Pascal’s expression and was met with a blank screen.  We’d lost him again.  “NOOOOOOO!  I cannot believe you just missed this!”  I shouted at the darkened screen while Joe, Emma’s therapist, and Richard laughed.  Our excitement was palpable.  But I’m getting ahead of myself.  Let me back up.

Two weeks ago we had our first session.  It was beyond exciting, but in the interim, between that session and our Skype call yesterday I’ve been filled with anxiety and so have only tried to practice with Emma a couple of times.  (For those of you unfamiliar with facilitated communication, it has a complicated history.  That history I’ve touched upon ‘here‘ and ‘here‘.)  I worried that I would inadvertently push Emma to type something she didn’t intend, I worried that I might betray her, by literally putting words in her mouth.  I have never forgotten one of the things Amy Sequenzia said to me regarding FC – that the most important piece was trust.  I didn’t want to do anything that would betray that, so I did nothing at all.

The first thing Pascal did was cover some of the basics.  We went over different things I could try.  We discussed the correct way of providing support firmly enough to ensure that trust, but not so much that it becomes a vise grip or so loosely that it is little more than an irritant.  Getting the support right is key and not as easy as it might sound.  There is also the resistance piece to all of this and there’s a rhythm that must be achieved as well.  The process is unlike anything I’ve ever done before.  I want to liken it to dancing, not the sort of dancing one does in a mosh pit, but ballroom dancing or learning the mambo, where you have to be in sync with your partner, both with your physical movements, but with your mind as well.  I’ve had some wonderful FC advisors (other moms who have generously talked to me and given me tips from their experiences doing FC) and so I remembered some of their suggestions.  One, from a new friend, Sheree, told me I need to empty my mind.  For anyone familiar with Buddhism this sounds much easier than it actually is.  But when I felt myself wanting to push Emma to hit a certain letter on the iPad, I “told on myself” immediately and Pascal would gently advise me.

As our session continued and I became more comfortable, feeling the rhythm and getting the right sense of her, we went beyond Emma typing answers to questions such as, “Where are they ice skating?” after being shown a photograph of ice skaters at the ice rink in Rockefeller Center and her dutifully typing Rockefeller Center (which I don’t mean to sound blasé about because you have no idea how  HUGE this was, but it was nothing compared to what happened next!)  We moved on to increasingly challenging questions, like “What is the name of the airport we have to fly into before we fly to Granma’s house?”  She typed “Denver” and I gasped.  *I keep wanting to tell you, to describe to you how massive this is.  I want to explain to you that while it may seem small or even utterly unexciting to you, it was beyond exciting for me to see her respond in this way.*  I don’t think I’ve ever heard Emma say the word “Denver” before and while this is something she has heard many, many times in her life; it is a place we must fly to several times a year when we go visit Granma, it is not something I expect Emma to utter.

Pascal continued to ask Emma more questions about visiting Granma and then I asked, without really thinking, “What kind of dogs does Granma have?”  Emma pointed her index finger and then reached for the “g”.  I think I may have held my breath.  Waiting.  Empty my mind.  Wait.  And then her finger found the “e” and I let myself take a tiny breath.  Keep breathing I told myself.  Keep breathing.  Quiet mind.  Be with her.  Let go.  Be with her.  Open mind.  Breathe.  And then her finger found the “r” and on we went until she’d written “german shepherds” complete with the “s” at the end because there are two and of course she’s correct and I sat there and stared at those words; the two most beautiful words my daughter has ever typed and I looked at her and pressed my forehead to her cheek.  I cannot convey the feelings.  Gratitude.  Joy, unbelievable joy and something else…  something I don’t know that I have the words for.  A knowing.  That’s all I can say.  I deep knowing that this is the right road we’ve taken.  We are on the right road.  And I exhaled and asked, “Em.  What kind of dog is Dozer?”  Emma looked at me and said, “Last time.”  And I laughed and hugged her and said, “Oh Em.  Really?  I want to talk to you like this all day!”  Emma beamed at me and then she patted my knee.  “Okay Em.  Last time,” I said. Then she typed, “nufandland.”

EEEEEEEEEEEEEEEEEEE!

*Cannot type through the tears.

Dozer with Emma, who is terrified of dogs and yet…

Dozer&Em

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Posted in Autism, facilitated communication, Parenting

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What Makes You Happy?

Posted on December 5, 2012 | 20 comments

Happiness is….

My husband

*Richard

Our son

Nic

Em

A flamingo

Our fabulous kitty

Merlin and the Gator

This…

Nicw:dogs

and this…

Emonherpogostick
the ranch…

6AM

7:00 AM in New York City

AMin NYC

And this… this one’s for you, Brenda

Ilovemyshoes
and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)

kisses

What makes you happy?

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Posted in Autism, family, Happiness, Marriage, New York City

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To the Person Who Googled “I don’t know if I can handle Autism”

Posted on December 4, 2012 | 28 comments

I have three things I need to say to you.

First.  Come.  Talk.  Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.

Second.  Fear.  Feel the fear.  It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment.  They say fear can be informative.  This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it.  Fear drove me to do a great many things I regret.  I wish I could tell you I have no regrets, but I do.  So, so many regrets.  Avoiding the fear is just one of them.  I wish I’d sat with it.  Leaned into it and listened to it, without believing what it whispered to me as though it were fact.  Listen to it, but don’t believe it.  Who knows what I might have learned all those years ago.  Who knows had I done that, what mistakes I might have avoided.  Who knows?

You see, fear was the driving force behind my relentless search for a “cure”.  Fear is what made me think anything I did was better than doing nothing.  Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong.  It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in.  I convinced myself that this person, finally would be the ONE.  They would reach out their hand and show me the path I needed to take.

All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them.  For those who did, well, they obviously didn’t have a child like mine.  You had a child who was less profoundly affected by autism than mine.  This was my thinking, this is what I believed in my heart.  (This is my story, it may not be yours, but it is the only story I can tell.)

Third.  There is a documentary I love.  I have watched it many times now.  It’s called Wretches and Jabberers.  I’m not going to tell you more, you just have to see it for yourself.  It’s available on iTunes, Netflix and Hula.   You can purchase a copy from Amazon.  Even if you ignore every other thing I’ve written here, just watch it.  It is a documentary that every human being on this planet should see, because it is about more than just autism.  It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone.  It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.

And finally remember this – just because someone does not speak, does not mean they have nothing to say.  Just because someone cannot make their needs known, does not mean they have none.  Just because someone does not tell us they love us does not mean they do not.  Just because someone does not look at us, does not mean they do not see us.  Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot.  Just because we think they are ignoring or cannot hear us, does not mean they are or do not.  Just because we think someone cannot write or read does not mean they can’t or never will.

Just because we feel, in this moment, we cannot handle something does not mean we can’t.  With support, we can and we will.  And so will our children.  They can, they do, and with help, they will.  Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.

Choose to believe.

Emma on her 4th Birthday – 2006

Em - 2006

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Posted in Autism, fear, Parenting

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Sensory Overload and Sensory Cravings

Posted on December 3, 2012 | 33 comments

My friend Ibby posted this video on her Facebook timeline (for those triggered by loud noise, flashing lights and/or prone to seizures, do NOT watch or at least turn the volume way down and stand back)  

A twitter friend, after I reposted this video, wrote that this was why he wears headphones and I tweeted back that while Emma is sensitive to some noises, for the most part she craves noise and typically turns the volume up as loud as it can physically go on both music and favorite movies, much to the horror of our various neighbors.  Even though we live in New York City (a place that is, for many, a sensory overload), people get cranky when woken at 6:30AM on Saturday morning to the strains of Michael Jackson’s Beat it.  Even hard-core MJ fans protest at the volume Emma prefers and at that time of day.

My twitter friend tweeted back, “I like certain noises, Avenge Sevenfold. ;D  It’s noises other than the one I’m trying to focus on that are the problem.”  And this is exactly the important distinction that I often forget or have trouble understanding.  Unless you have sensory issues, like the ones depicted in this video, I think it’s really hard to fully understand how debilitating sensory overload can be.

A couple of months ago I went to do our weekly grocery shopping run at Whole Foods.  Typically I go every Saturday in the early afternoon.  This is a time that isn’t too crazy, the lines aren’t insanely long and often it’s even comparatively quiet.  As I stood in front of the check-out person, the cashier next to her began loudly unfolding a paper bag.  The noise was deafening, a kind of snapping sound followed by crackling.   I actually felt physical pain from the noise.  My cashier looked over and laughed and then another cashier did the same thing with one of her bags.  In response the first guy did it back and suddenly I was in the midst of a cacophony of bags being banged opened, like a series of gun shots going off.  It was horrible. I stood there stunned.  I became so disoriented I could barely think and then I felt a surge of rage. How dare they make this kind of noise with those paper bags! How dare they behave this way!  I looked around trying to figure out who I should direct my anger to and noticed that not only were they smiling, some were even laughing and so were the other customers.

They were having fun!  I was astonished.  What was so incredibly painful to me, was amusing to others.  As I left the grocery store I reflected on sensory issues and how overwhelming they can be. I thought about Emma and wondered what it must be like for her.  Does she feel this way when she needs sensory input and cannot get it or is told she must turn the volume down?  I know there are certain noises she cannot tolerate, like the cuisinart.  She hates the sound it makes and will only tolerate it if I allow her to control it and put it on “pulse”, the same goes for the electric mixer.  If one of us sings along to music she’s listening to she can’t stand it and puts her hands over her ears.  (I completely understand her doing this when I sing, I’m pretty much tone-deaf and it IS painful to listen to for even those with no sensory issues, but she does this to anyone who sings along.)

After watching the video I posted above, I was grateful for the ending.  Not because it changed anything or showed some obvious solution, but because it was one human being taking the time to notice another human being in obvious pain without judgment or condemnation.

As an aside – I would love to hear from those who need and crave sensory input.  What is that like?  What does it feel like?  Is there anything you’ve done that has helped you.  Any advice or ways we can make your life more tolerable during those times?

Emma – 2007 – Auditory Integration Therapy

Em

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Posted in Autism, sensory integration, sensory issues

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Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 | 68 comments

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

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From Anthropological Duty To Love Or Things Not to Say to Your Sister-ln-Law by Kis Brink aka Gareeth

Posted on November 29, 2012 | 14 comments

What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth).  When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here.  Kis gave me her permission for which I am honored.  It was this piece by Kis that inspired yesterday’s post:  Yes, These Are Things I Think About, What About You?

“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.

Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem. 

Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong.  I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.

“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society.  How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.

“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.

“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed.  The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.

“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.

“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.

“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.

“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.

“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present..  All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.

“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul.  His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”

“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.

“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.

“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.

“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.

“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”

Emma reading her favorite book – The Way I Feel – 2008

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Posted in Autism, Autistic Role Models, love

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Yes, These Are Things I Think About – What About You?

Posted on November 28, 2012 | 49 comments

We, non-Autistics say all kinds of things without thinking.  We use a sort of socially accepted shorthand during a great many encounters.  It’s a way of being in the world that requires no thought, rote gestures and words that are mindless and often meaningless.  Expected utterances we don’t think about, we do and say them because we are taught to do otherwise is impolite.  Upon meeting someone we automatically put out our right hand in greeting.   We are taught to smile and ask, “How are you?”  The response is unimportant, after all we aren’t really asking the person we’ve only just met to seriously contemplate their mental state and then divulge this information to us, neither are we honestly curious except in specific instances when we know something about the person and have wanted to meet them.  But typically, “How are you?” is an opener.  It’s merely a polite question we’ve been taught to ask, showing the accepted degree of interest in the other person, even if we actually have none.

Someone I know sent me a wonderful piece she’d written about meeting her baby nephew for the first time and being expected to say immediately that she loved him and how disappointed her family member was when she couldn’t bring herself to say those words right away, even though she felt a number of things that we non-autistics would probably identify as feelings of “love”.  Reading her wonderful piece (click ‘here‘ to read it in its entirety) made me think about all those years when I would encourage Emma to say “I love you.”  I even said to her, on  a number of occasions, “I love you Emmy.”   To which she would reply, “So much.”  I then laughed and said, “No Em, you’re suppose to say, I love you, back.” And Em dutifully said, “You’re suppose to say I love you back.”  I don’t, for a second, doubt that Emma loves me.  I know she does.  I also know my desire to have her say so, is my wish and not a desire she puts much weight into.  For all I know Emma doesn’t say those words because she doesn’t  feel the need to, perhaps she doesn’t see the point in reminding me of this fact.  Perhaps, and this is the one I hope is most true, she doesn’t feel the need to utter those three words because she is secure in the knowledge of her love and assumes I am too.

Many of the “niceties” we non-autistics say are said with a degree of dishonesty because really, how “nice” is it to meet someone you may or may not ever see again, may or may not have anything in common with and do not have time to actually get to know?  And while we’re at it, let’s consider “how are you?”  How many people really care?  We are taught to respond with the equally (often) dishonest single word, “Fine” but how many of us really are “fine” when we’ve been asked how we are?  Seriously.  How many times have you been asked, “How are you?” and you either didn’t actually know, hadn’t had time to think about it or weren’t fine, but were instead feeling something else, yet replied with “fine” because it was simpler, easier, safer or because the conversation had already moved on, before you’d had the chance to give your more thoughtful reply?

So I’m curious – what if we didn’t ask or say things unless we were honestly interested and meant what we were saying as a way of communicating something new or that required discussion?  What would happen if, upon meeting someone we weren’t sure we really were pleased to meet, said nothing?  Would this be so bad?  What if, when asked “how are you?” we answered truthfully?  What if when we voiced our love for our children and they said nothing in return, we didn’t assume that meant anything other than our child did not find it necessary to state the obvious?

Em & Nic – Summer 2004

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Excitement, Impatience and Waiting

Posted on November 26, 2012 | 64 comments

The day before Thanksgiving a facilitator, P. came over to work with Emma.  I met P. at the AutCom Conference in October and asked him for some guidance in helping Emma communicate more effectively through typing.  And while Emma is verbal, she can voice basic desires, has even begun to comment on things going on around her, she has not communicated more complex thoughts.  I know Emma is intelligent with a great many ideas and interests.  I want to help her express herself in whatever way proves most advantageous, whether that is verbally, through typing or some other, still unknown, way.   I want to help her be a full participant in this world so that she can have choices and options available to her.

P. has facilitated people for several decades, so I felt confident he would be able to help me learn how I can help Emma better and was excited to have him work directly with her while I watched.  We started with a number of apps, Emma had no trouble pointing, using her index finger to match words with images that she knows.  But in the past when it comes to typing an idea, Em will usually type, “yes” or “no” and then repeat the question, which is what she was taught to do with her most recent literacy program.  I am hoping Emma can be encouraged to move beyond that.

As P. worked with her, slowing her down so she couldn’t simply repeat what had been asked, holding her arm at the elbow, putting up some resistance to her desire to type quickly, reminding her to write what she was thinking, asking if that’s what she meant, I felt tremendous hope.  P. asked Em to bring a book she liked.  She brought him a collection of fairy tales and plopped the large book on the table in front of him.  Em chose to discuss Goldilocks and the three bears.  Most of what was typed were fairly simple ideas about the bears and Goldilocks and the havoc Goldilocks causes (much to Em’s delight.)  But then P. asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.  It was a terrific idea, one I have discussed with both children during the summer months when we visit my mother in Colorado where we often see bears.  I have warned the children that if they encounter a bear, especially a mother with her cubs, to not get between them, to keep their distance, to keep their eye on the mother and to make loud noises.

But Emma wasn’t finished.  She then typed, “By the way, this is a very sad story.”  I was astonished.  I had a million questions.  Emma has never spoken this way.  Ever.  “By the way” is something both Richard and I say, both in jest as well as seriously.   Em has never uttered these words, let alone typed them.  And why does she think it’s a “sad story”?  What strikes her as sad?  Which part or does she think the whole thing is sad?  It is sad, I thought and then I Immediately went to,  I have to become trained in facilitated communication.  I have to find a way to communicate like this with Emma.  As I am not able to become trained in facilitated communication in the next 24 hours, I made an appointment to Skype with P. in another week, which feels like an eternity, and will try to do whatever I can to continue to learn so that I am better able to help my daughter become an independent communicator.

Between now and that Skype call, I am doing my best to manage my impatience, my excitement, my hopes and dreams and the reality that my daughter has a great deal to say and boy do I want to hear it all!

Em & P.

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A Story About Our Black Cat

Posted on November 21, 2012 | 18 comments

About nine months ago I read this post from E.  click ‘here‘.  It’s about her cat M. (I just loved she chose to keep him anonymous!)  When I found E.’s blog The Third Glance I went to the beginning and read every single post she’d written.  She was fairly new to the blogging world and so it was relatively easy to read all her posts in a few days.  I sent Richard the link to My Cat is My Hero because we have a black cat also with a name starting with the letter M.  Also from a rescue shelter and also a pet that we absolutely adore.  Unlike E.’s cat however, Merlin announces his presence to anyone who is capable of bending down to pet him.  He demands attention and shamelessly pursues anyone who seems remotely willing to give him his due.

Prior to Merlin, Richard was a self-proclaimed “dog man”.  He explained to me patiently that he did not particularly like cats, that given his preference he would surround himself with dogs.  In fact, Richard, when I brought up the idea of getting a cat after the children kept asking for one, said to me, “If you care about me and our marriage, you will not bring this up again.”  To which I replied, “I do care about you and our marriage.”  And the subject was dropped.  (By me.)  However that did not hold for Nic and Emma.  They brought the subject up repeatedly (and I did nothing to discourage them, though I will deny this to Richard, even after he reads this here, I’m still going to deny it.)  And finally when Emma said, in a particularly adorable and sad voice, “Bring kitty home?” while at our weekly trip to the pet store, Richard said, “What do you think about getting a cat?”  To which I casually replied, “Oh, good idea.” Eye roll and the slightest of smirks.

When we arrived at the pet store we explained that the cat we were looking for would need to be comfortable with children and loud music.  One of the employees brought over a rust colored cat whom he assured us loved being held and was a “lap cat”.  He was adorable, but Richard looking slightly ill, leaned over as I held the kitty in my lap and whispered, “We are not getting that cat, he looks like liverwurst.”  “He does not Dad!” Nic cried.  But Richard stood firm.  We continued to view the dozens of cats and then Nic said, “Mom.  Look at this one!” And there he was, black as chimney soot, green eyes calmly staring at us, he even swaggered as he made his way over to us.   I had been reading Temple Grandin’s book, Animals Make Us Human  and had made a mental note about her suggestion that black, male cats were often calmer and she advised gently putting the cat on his back with a light hand on his belly to see what he would do.  If he bit or clawed or panicked, he was probably not the right cat for a family with children, but if he was calm, he was, most likely ideal.  I did as suggested and Merlin purred, relishing in the attention, then righted himself when he’d had enough and wandered over to Emma, who began to pet him.

Both Nic and Emma expressed their approval and after the lengthy intake process where we had to present referrals and swear to uphold a lengthy list of requirements such as promising not to declaw him, take him regularly to the vet, etc we were allowed to bring Merlin home.  Though there was an anguished moment when Nic asked Richard, “Dad, aren’t you so excited?” And Richard said loudly, “Yeah, right Nic.  I am NOT excited to have this animal come home with us.” Meanwhile the manager of the shelter was standing behind Richard looking none too pleased.  It was one of those moments when I thought our plans to adopt were dashed and Merlin would not be released to us after all.  But even with Richard’s ill-timed, less than enthusiastic response, within hours Merlin was home and strutting about as if he owned the place and by the second day was scaling the curtains, climbing to the highest places he could find, walking like a tightrope walker along the curtain rods and then leaping down on top of us, much to our terror.

Despite all of this, or perhaps because of it, Richard began to soften.  Merlin being the brilliant cat that he is, immediately began following Richard around as though he were a faithful hound and NOT a cat at all.  Within a week Richard was speaking to him and by the end of that first month it was clear Richard had succumbed to Merlin’s charms.  In addition to all of this there were sightings by Nic of him using the toilet to pee and it was also around this time that Merlin taught us to play fetch with him, which sealed the deal for Richard who now cannot be away from Merlin for more than a few hours before mentioning him.

Please enjoy this video, shot by the ever adoring, Richard just last week while I go brine our turkey.

Merlin

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Mistakes Have Been Made and Random Acts of Kindness

Posted on November 20, 2012 | 33 comments

A few months ago someone typed into a search engine – “how can a 56 year old make a mistake” – and they were led to my blog.  Which is either a great relief or pretty horrifying, I haven’t decided.  I read those words and my first thought was, Why are they being led to my blog?  I am NOT 56 years old!  But when I am, I will undoubtedly still be making mistakes.  Do any of us stop making mistakes?  Isn’t that part of being in the world, being human and being alive?  To err is human and all of that?  None of us get out of here doing this perfectly.  So yeah, I’m okay with the fact that someone was led to my blog who may have been incredulous that a 56-year-old or even a 52-year-old (my actual age) could make a mistake or, as is my case, many, many mistakes.  I have, I do, no doubt I will continue to make mistakes.  But the wisdom of years is that I don’t need to pretend I’m doing everything perfectly, I don’t need to hide from my mistakes.  I can look at them, see them for what they are and hopefully, move on.

Which brings me to Emma.  I would really like to not repeat a great number of the mistakes I’ve made when it comes to my daughter.  Some I can’t even call “mistakes” because I kept repeating them and at a certain point repeated actions get pushed out of the “mistakes” category and into the “bad decision” category.  (It’s kind of like when someone says they’re going to go take a nap and then disappear for four hours.  That’s not a “nap”, that’s going back to sleep!  It doesn’t matter that it’s in the middle of the day.)   So yeah, I’ve made plenty of decisions I really wish I hadn’t, decisions that affected my daughter.  Decisions I don’t feel happy about or proud of.  There are others I am even ashamed of and feel tremendous guilt over.  It would be dishonest of me to say otherwise.

But here’s the thing, beating myself up over those things doesn’t make me behave better, it doesn’t make me a better parent.  I used to think that if I just punished myself enough I’d stop doing whatever it was, but that never happened.  Punishment just led to more feelings of guilt and shame.  Punishment meant I felt worse about myself not better.  Punishment and self-criticism make me exhausted and keep me firmly rooted in my ‘self’.  There are two things I know to do when I’m feeling this way (but still forget to do them, so this post is equivalent to putting a string around my finger.)  I need to do both these things at the same time, or within close proximity to each other.  I need to be specific about what I’ve done that I feel is unforgivable.  I need to list these things and then I need to tell on myself. I have to be careful with this part.  I have to find people who I’m pretty sure will not condemn me, but instead will be kind and loving.  I need to admit what I’ve done and then I need to reach out to others and “be of service”.

The concept of being of service has saved my life.  I don’t mean to suggest that I think of myself as a martyr or Mother Teresa or Gandhi.  I mean that it is crucial for me to reach out to others and not just when I’m in self punishing mode, but every day.   Random acts of kindness.  I had to learn how to do this years ago.  It was something I had to practice, because it didn’t come naturally to me, particularly when I was in self punishment mode.

I will never forget when both the children were young.  I had Nic in a backpack and Em was a baby in a sling.  I was waiting for the light to turn green on our way home from a day spent in the park.  Both kids were tired, I was tired and feeling grumpy.  I was obsessing over how I’d spoken crossly to Nic and was exasperated with Emma because she wouldn’t nap.  I began beating myself up.  I wasn’t a good mother, I should be more patient, I shouldn’t be so easily annoyed.  And as I was ruminating about all of this I noticed there was a blind man waiting on the corner with us.  I had been practicing random acts of kindness for several years by then so without thinking I said, “Would you like help crossing the street?” and the elderly man said he would.  I offered him my arm, he held it right where my elbow was bent and the four of us crossed the street.  As we were crossing Nic began to coo and Emma was making gurgling noises, the man turned his head and said, “sounds like you’ve got your hands full!”  So I told him about how I was carrying my baby daughter in a sling and my son loved being in a Kelty backpack and the man just thought this was hilarious.  We ended up walking with him for several blocks beyond our home and when he was close to where he lived we parted.  I no longer felt grumpy or tired, I felt exuberant, in love with the world and all its inhabitants.  I bet that man doesn’t remember us, but I’ve never forgotten him.  He gave me a gift that day, something I hadn’t been able to give myself and it was beautiful.

He gave me kindness and forgiveness.

Emma & Nic – April 2002

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“Nearly Every Moment…”

Posted on November 14, 2012 | 22 comments

My friend Paula Moerland allowed me to post this.

“Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance
Always

I am not selfish

I am exhausted”

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October

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Bloggers, Writers, Autism and a Huge Amount of Hope

Posted on November 13, 2012 | 40 comments

When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve.  I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t.  Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out.  Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant?  Or so my thinking went.  During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect.  I found none and concluded that since I couldn’t find any, there must not actually BE any to find.

Still, just on the off-chance I was somehow wrong, I kept looking.  Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life.   (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years.  Despite all of this, my search continued.

In 2005 Em’s PDD-NOS diagnosis officially became “autism”.  As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant.  I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good.  I bought into the autism is like cancer idea, and therapy was chemo.  (This idea was very popular back in 2004, though I hope it has waned.)  It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is.  The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.

Now fast forward to this morning.  This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”.  Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em.  Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.”  It is a wonderfully written description about a baffling behavior.  She does such a terrific job describing her actions and words that they made total sense to me.  Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.

And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me.  It’s not because I think to myself, oh Emma is going to become this person when she’s an adult.  I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future.  I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children.  How could I?  There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child.  It’s kind of a ridiculous idea when you stop to think about it.  And yet, that’s what I wanted for all those years when I was searching.  I wanted to find someone who seemed just like Emma was.  I wanted this desperately because I was so fearful of her future.  Yet, all those autistic adults who are not exactly like my daughter  are the very reason I am no longer fearful and why I have so much hope.

Blogs, both the writing of this one and finding those written by Autistics have changed my life.  Blogs are a slice of life, immediate and interactive.  I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer.  I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond.  The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book.  Books are wonderful too, but they’re different.  They do not have the interactive element to them that makes blogging so wonderful.  Blogging is very much about “us”.  We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”.  Another aspect of blogging is – anyone can blog.  You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write.  So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.

To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you!  You are making a difference.  You have changed my life.  How does “thank you” even cover the enormity of that?  It doesn’t.

Emma – 2003

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Fog

Posted on November 12, 2012 | 16 comments

When I climbed the stairs out of the subway this morning and began heading west to my studio, fog completely obscured the Manhattan skyline.  I’m no stranger to fog, whether metaphorical or actual.  In northern California where I grew up, fog was a constant.  Each morning the fog would cover the mountains near our house, but by 11:00AM it would have lifted.  I feel a certain nostalgia for fog.  As I walked the four blocks to my studio this morning I thought about how, when we can’t see something we often assume it isn’t there or what we assume is there, actually isn’t.   Had I not known fog was covering an entire thriving metropolis called Manhattan, I would not have been able to imagine it.  That’s the beauty of fog, it usually lifts and when it does, it often reveals surprising things.

This has been my experience with my daughter and autism.  Autism was, for a great many years, like the fog, obscuring the child within.  I kept trying to lift the fog, thinking that if I could do so, I would “find” my daughter.  Then I began to realize the “fog” was my thinking.  The way I thought about autism was obscuring my daughter.   My daughter has always been there, just like Manhattan is and when the fog lifts I can see her in all her magnificent glory.

Emma – 2004

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The Best Marital Advice I Was Ever Given and How It Applies to My Daughter

Posted on November 9, 2012 | 30 comments

One of the single best pieces of marital/relationship advice I was ever given was:  Every day record all the things your partner did that was kind, helpful, thoughtful, ‘right’.  What are the things you love about this person?  What do you admire about this person?  What do you respect about them?  What are the things they do that make you happy?  What do they do that fills you with joy?  To many, these questions may seem obvious, but try doing this when you’re angry or fearful or even just annoyed.  I remember sitting with my journal that first evening and wondering what the hell was I going to write?  He breathes?  Could that really be seen as a good thing?  (It’s okay to laugh.)  I’m a master at this exercise now.   In fact, I’m so good at it, I now think of the positives FIRST!  And guess what?  My marriage is pretty fabulous, of course it helps that I’m married to such an amazing guy.

The first time anyone asked me about Emma’s assets we were a year or two into the diagnosis.  I thought it was a trick question.  Seriously.  It was my brother Chris, who asked, “What does Emma like to do?  What is she interested in?  What is she good at?”

My mind went completely blank.  No one had asked me these three important questions about my Autistic daughter.  Listing assets does not fit neatly into all those questionnaires I was constantly having to fill out.  Those little booklets with questions broken into categories of age.   Example:  From 3-5 years old:  Your child plays appropriately with toys  The choices were:  Never, Rarely, Sometimes, Usually, Always.   My pencil would hover over the choices as my mind raced.  What does “appropriate” even mean?  Why is pretending a doll is an actual baby, when it clearly is not, considered “appropriate”?   Eventually I resigned myself to the task and considered “Rarely” and “Sometimes”.   Depending on my mood, I would mark one of the two and feel the all too familiar sensation of constriction in my stomach and throat.  Fear flooded my body and mind as I tried to concentrate on the next question:  Your child eats using all utensils.  Again I would resist the urge to fudge the truth.  I had to force myself to choose the answer that came closest to reality.  I came to dread those questionnaires almost as much as reading the evaluation reports sent in once a year from the Board Of Education.  They were both exercises in, so-called, critical thinking – Look at this picture and tell me what’s wrong with it.  Look at this child.  Now let’s compare her to her neurotypical peers.  Let’s make a list of all that’s “wrong” so we can make things “right”.

But wait!  How is this helpful to anyone?  Comparing anyone to anyone else is a lesson in how to live one’s life in hell.  But compare a neuroatypical person to a neurotypical one is absurd.  Why do we even do this?  To what end?  How is this helpful?  Certainly it isn’t helpful to the neuroatypical person.  We do not say to a person who uses a wheelchair, well, you’re not walking and your same age ambulatory peer is, so let’s get you up and out of that chair and try to build those muscles. Then, when you resist or protest, we restrain you, tell you to stop complaining or tell you that you can’t fully comprehend the situation.  When you still do not manage to stand, let alone walk, we shake our heads sadly and tell you, you really need to have a better attitude and try harder, but don’t worry, it’s okay, we’ll keep working on it.

What does this thinking do to a person over the long-term?  If we are judged, compared, relentlessly criticized, taught that we fall short, told we don’t measure up, dissected publicly, privately and shunned, what does that do to us?  What would that do to any of us?  We are, after all, regardless of our neurology, human beings.  We do all share that.  Has the human piece gotten lost in all of this?

What does she like?  What’s she good at?  What is she interested in?

I’ll have to get a bigger pad of paper.

Em at Gymnastics – October, 2012

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Why? I Want to Understand…

Posted on November 8, 2012 | 96 comments

I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it.  I don’t mean I think about it, while silently complying.  I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.

I can’t help myself from asking, “Why?”  By the way, I am also married to someone who does the EXACT same thing.  Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning.  Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it.  But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic.  It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification.  I tend toward the last two options.  I’m all about clarity.  I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.

There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love.  Which brings me to a question that’s been very much on my mind recently.  It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks  on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly?  I’m actually being very serious with this question.  I want to understand the thinking behind this.  Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot.  When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes.  When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude.  I think I read her comment a dozen times.  When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled.  When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement.  I felt profound relief because:

1)  they are Autistic adults and until I found them, I personally knew none
2)  they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3)  they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem.  This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.

I do not read or speak with my Autistic friends and assume they are speaking for Emma.  I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy.  Each of these women has helped me help Emma far more than any “autism professional” has.  The Autistic men and women I know give me hope.  Hope, not just for Emma, but for ALL our children.  Hope for our world and our future.  I feel grateful to them.  I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard.  Maybe one day my daughter will be among them.  I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me?  Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be.  I cannot imagine what that does to one’s sense of self to be met with such outright hostility.  And I don’t understand why.

I am seeing that my experience is not the experience of others.  I do understand that, but why?  Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing?  Why is it that some parents don’t want to hear from Autistics who can communicate?  What am I missing here?  Really, I want to understand this.  Help me understand.

How could you NOT want to hear what she has to say?

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