A Confession

In my teens, through my twenties and half way into my thirties  I used food the way a junkie uses heroin, only my “highs” didn’t last as long.  As a teenager I realized there was nothing like eating large quantities of food to quell my discomfort, boredom, pain, happiness, sadness or anger.  I found I could “cancel” out my overeating by purging.  Vomiting quickly became as much a compulsion as eating was.  At a certain point I had to do both, and though I didn’t think of it as one and the same, both provided the relief I sought from the pain I was in.  Very quickly I went from making a decision to eat, to feeling it was no longer a choice, but something I had to do.  The pain felt so unbearable, the food and vomiting so wonderfully seductive and numbing, I began to feel I would die if I didn’t give in to my compulsions.

By the time I was seventeen I knew I had a problem.  I had tried, on numerous occasions, to cut back or stop, but I could not.  By the time I was eighteen it was clear to me that I was an addict, but few agreed.  Being addicted to food is not a popular or commonly accepted idea.  Being addicted to food is not considered, by many, to be a true or real addiction.  Instead people said, “Just go on a diet.” “Just stop eating when you’re full.”  “You’re not an addict, you just like food.”  “You can’t be addicted to food, you just have a problem with will power and self-control.”  “Why don’t you talk about it, maybe that will help you understand your real problems.”  “Fast for a few days and cleanse your body.”  “Here’s a hypnotist I know, he was very helpful when I decided to stop smoking.”  “You need to get a hobby, take your mind off eating and food.”

So for years I followed everyone’s advice.  I went to psychiatrists, psychologists, behavioral therapists, group therapy, eating disorder specialists, body workers.  I tried diets, fasting, cutting out particular food groups, visualization, aromatherapy, and read every book I could find dealing with weight loss, compulsive eating and dieting.  I kept journals and wrote about my feelings, I weighed myself and measured all my body parts.  I kept detailed records of weight gain and loss with the corresponding inches gained or lost.  I viewed myself with a critical eye, carefully evaluating the “problem areas” and resolved to work on those with trips to the gym and exercises targeting those troublesome parts of my body that didn’t measure up.  And as I did all of this I kept telling myself that there was obviously something fundamentally wrong with me or else I would be able to eat like everyone else.

It never once occurred to me that my self loathing and self-criticism did little except make me want to eat more and only served to increase my anxiety and self-hatred, which in turn increased my compulsiveness.  Over the years as I continued to try, and failed at various “treatments” I became more and more depressed, until eventually I felt the only real option left was suicide.  And as I contemplated this, as I seriously began to consider this as a viable option I was told to go to a group of people who were grappling with the same issues I was – food and compulsive overeating.  It was there in those rooms filled with people just like myself that I felt, for the first time, I belonged among the human race.  Finally I had found my people.  Up until that point I felt like an interloper, a perpetual outsider, the one who couldn’t figure out how to live with the same kind of simplicity and ease everyone else seemed able to do.

This group of people taught me how to be in the world.  I learned that my actions, the things I said and did, affected how I felt about myself.  These other addicts helped me navigate life one day at a time, reminding me that I was not alone and that others had come before me.  They held out their hands, offered me  support and guidance and encouraged me.  They taught me about honesty and taking “the next right action” and the importance of being present.  I came to understand that my life was of value and that I in turn had something to offer others.  As I learned to behave in a kinder more tolerant way toward others, I became kinder and more tolerant of myself.  As I became more tolerant of myself I felt more comfortable in my own skin and began to accept myself for exactly who I was.  As I did this day by day I found my compulsions lessen.  I found I could concentrate on other things.  I realized I had a great many interests and was able to begin pursuing them.  I found I had the energy and the desire to help others who were like I once was.

Now, close to twenty years since those early, painful days when I first discovered I was not alone, my life has completely changed.  That person I was all those years ago is not who I am now.  But I still remain an addict.  It is who and what I am.  It is important for me to remember that, because it is when I forget that I once again find myself back in the food, obsessing about my body and how much I weigh, wondering how many calories are in any given food and where and what I can or cannot eat.  It is so easy to go there and when I do, I lose out on my life.  As an active addict everything and everyone else takes a back seat to my addiction.  Active addicts are not fun to be around.  They have little to offer.  But those of us who have come out the other side, who have learned how to be in this world without picking up our substance of choice, we have so much to offer and give.  Some of the finest, most generous and trustworthy people I know are addicts with years of recovery under their belts.

I am an addict.  I am a mom.  I am a wife.  I am a friend.  I am a human being.

1988 in New York City

1988

Happy Birthday Dear Emma!

Happy Birthday Dear Emma!  

Eleven years ago you came into this world and graced us with your presence.  Eleven years ago you presented yourself to us and from that first moment that you drew breath you began to have an impact on all who met you.  You are an example of perfection, exactly as you are, without need of tweaking.  You are strong and wise and smart and intelligent and funny and talented and beautiful.  You are determined and a terrific negotiator.  You are fiercely independent and artistic and your mind, how you think, the way you perceive the world and those in it is a beautiful thing. You are patient and generous and kind.  You are loving and good.

You are perfect.

You are just at the beginning of your life, but already you have taught me more than I could ever teach you.  Eleven years ago I had no idea that because of your life, mine would change as dramatically as it has.  I could not know that because of you and who you are, my entire outlook on life, the world and it’s inhabitants would change so radically.  These are changes I welcome.  These are changes I am so very grateful for.  They are good changes, important changes.  You have forced me to see what I once could not.  You have shown me another way of living, a better way of being in this world.   You have opened my eyes to all that is possible, and it is beyond my wildest dreams.

You are perfect exactly as you are.

One day I hope you will be able to read this on your own.  But until that day arrives, I have one wish I would like to have granted on this day, your eleventh birthday and it is this –  flourish and do not ever, ever allow anyone to bring you down, make you feel badly or cause you to doubt yourself.  Spread your wings and fly dear Emma and I will be here to support you, to love you, to cheer you on and to remind you of your perfection.

You are beautiful Emma Rose.

You are perfect.

4:30PM January 17th, 2002 

sc000a1b04

January 17th,  2003

Birthday Girl-2003

Central Park – January 2004 

2004

January, 2005

2005

Jamuary 17, 2006

2006

January 17, 2007

2007

January, 2008

2008

January 2010

2010

January 2011

2011

January 2012

Birthday Girl-2012

 

 

Try to Imagine

Imagine… Imagine that from the moment you were born every aspect of your being was evaluated and studied with a critical eye.  Imagine that who you were, the way you spoke, moved and behaved was seen as deficient.  Imagine that from an early age you were talked about as though you didn’t understand and even if you did not fully understand everything said, you understood the emotions behind the words, the disappointment, the fear, the anger, but you had no idea why you had caused such a response.  Imagine how that would make you feel.  Now imagine how you would feel if you understood every single word uttered, but you could not speak or make it known to others that you understood.  Imagine how you’d feel if you grew up believing your very existence caused others discomfort, pain and suffering.

Imagine that as a small child you were assaulted by light, sound, touch, odors, taste, things that did not cause others pain, but that made your life almost unbearable.   Imagine that you also felt people’s energy intensely but were often confused and overwhelmed by these feelings.  Imagine that when you cried in distress you were greeted with anger, confusion or were told nothing was wrong and to stop behaving this way.  Imagine how you would feel when you finally located the correct words and spoke them, people misunderstood you, became angry with you or you were told the tone you used was “wrong”, inappropriate or the volume with which you spoke was too loud or too soft.  Imagine trying as hard as you could to speak as you’d been instructed, but no matter how much you tried, you never seemed able to get it “right”.  Imagine what that would be like.

Try to imagine how you’d feel if you mustered up the courage to connect with another human being only to be shunned, teased or rejected and told to go away.  Imagine what it would be like to want to have friends and play dates and sleepovers but you had none.  What if you tried to make friends, but when you tried to connect you weren’t able to and didn’t know why.  What if your attempts to be friendly were seen as acts of hostility.  What if you punched someone on the shoulder because you’d seen friends do that to each other, but when you did it you were taken to the principal’s office, reprimanded and threatened with expulsion.  How would that make you feel?

Try to imagine what it would be like if the few things that brought you joy were stopped or taken away from you.  Imagine if you loved nothing more than to jump up and down, that this motion made you happy and calm, but when you did this you were punished.   Just imagine what it would be like if the things you found fascinating were ridiculed and joked about.  Now imagine that you are unable to make words form in your mouth so that you could say anything to explain or protest.  Or imagine what it would be like if you were able to speak and when you did, you were told your words were unacceptable.  You were threatened with punishment and institutionalization.  Take a moment to really imagine how that would feel.  Imagine what it is like to need help, to have to rely on people and to have those people hurt you, betray you, get angry with you over and over again.

Just imagine how it would feel if experts talked about your neurology as a deficit.  Imagine how it would feel to be told over and over that you were neurologically incapable of understanding what another person feels, and that you couldn’t truly understanding your fellow human beings.  When you suggested you felt a great deal, when you talked about how painful it was to look directly into people’s eyes because it was like seeing into their souls, or when people went to hug you it made your skin crawl or the odor emanating from the other person was too overwhelming, imagine what it would feel like to have people suggest you should just try harder or that you should do it anyway.  Imagine just for a moment how you’d feel if those same people then accused you of being difficult and told you it was impossible to have a “rational” conversation with you or you were told you were rude when you confronted them with their insensitivity.  Imagine what it would be like to be dismissed and silenced over and over again.  Just try to imagine what that must be like.

Try.

Try to imagine what it might be like to be Autistic.

Islands of Words

In Judy Endow’s book, Paper Wordsshe describes the process she went through to communicate.  She writes about the “bridge pieces” or information storage system she experienced, “Then world-people might see the little bridge pieces stuck onto the sides of all these stone islands.  

“Bridge pieces just hanging there serving no purpose (other than to underline the fact that a bridge was meant to be there, but isn’t) little bridge pieces going nowhere with gray -matter   g   a   p   s    where the bridges should be.

“Perhaps then the world-people might come to understand that even though she may know all the info that’s needed to answer their question or to produce a reciprocal response to keep up with her part of their conversation, sometimes it takes a lot of her time to jump in a boat and float around in that gray-matter space of her mind floating in the    g   a   p   s     trying to find all the right islands of stone that might hold any relevant data pertinent to the subject at hand.

“Sometimes it’s a cumbersome task to access information in this manner and at other times it is downright impossible.”

Judy’s book is incredible on so many levels and I hope she will forgive me for butchering the placement of her words, because my blog would not allow me to replicate what she does in her book.  However, I will try to explain.  She literally breaks the sentences apart in meaningful ways.  There are the words she’s writing, but there is another layer of meaning to be gleaned from her words, and that is how and where she places the words on the page.  As an example of the above quote, these words are placed in such a way as to create islands of words, separate from each other and yet the meaning overlaps, but the placement of the words (the islands) do not.  This requires the reader to visually leap from one island of words to the next, just as she describes her thought process must do.  It is a wild experience to read in this way and further illustrates her struggles with “bridge pieces” (information storage), “gaps” (information processing),  and canoe transportation (information retrieval).

In her chapter entitled,”People Are Not Interchangeable” Judy Endow writes, “…meaning that if PERSON ONE has a conversation with her today   …then tomorrow she can’t speak her response to PERSON TWO even if both persons belong to the very same group  sometimes when she knows what she’s talking about and the person to whom she is speaking acts like he doesn’t understand her the first thing she does is to repeat herself saying her exact words over but if the person still acts confused she begins to wonder… this may be one of those times when she needs to be talking to PERSON ONE but because both of them are in the same group it somehow makes perfect sense to her to be talking to PERSON TWO but this kind of mistake rarely works out so she must always remember the rule that she made for herself:  “People are NOT interchangeable.”

Again I couldn’t duplicate the arrangement of these words on this blog, an arrangement that serves to visually recreate the issues she describes having.

As I read Judy’s powerful book it was impossible not to reflect on my daughter.  How often has she said something that I did not/ could not understand?  How many times has she spoken to me about something or someone who I didn’t understand the context of, but that she seemed to know and understood me to know as well.  Only I did not.  How many times did I think – what am I missing?  And now I wonder, was she speaking to me, assuming I was PERSON TWO, while PERSON ONE might well have known exactly what she was referring to?  How many times have I been PERSON ONE and then explained to PERSON TWO what I thought was meant?

It happens often.

Emma doing one of her favorite “finger mazes” – 2013

Emma mazes

That Wasn’t A Question

Last night.  I’m at my computer writing.  Emma walks past me.

Em:  Have cereal and toast?

Me:  Em, you just had dinner a little while ago.

Em:  Time for cereal and toast?

Richard:  What?  No Em.  You just ate.

Em:  Emma’s hungry.   Have cereal and toast.

It took three times, but then I understood.  This wasn’t a question, this was a statement.

And with that, Emma went into the kitchen and fixed herself dinner #2 – cereal and toast, while Richard and I looked at each other and laughed.  

Evening light – New York City, 2013

Light

Musings on Fear, Dehumanization and Other Light Topics Worthy of A Friday Morning…

I have always had an irrational fear of institutionalization.  Irrational because I have no “diagnosis” or valid reason that would make such a fear reality unless you count being high-strung, emotional and I’ve been told over the years, “too sensitive” but I don’t think people are ever actually institutionalized for that… or are they?

Maybe it was the stories I was told as a child about a couple of my relatives, now dead, who were institutionalized against their will by family members intent on getting them out of the way, or perhaps it was from all those months my father spent in the hospital clawing his way back to the living after a horse back riding accident that left him disabled for the remainder of his life, or maybe it was the books I read and was drawn to as a teenager.  Books detailing (supposedly) real lives lived such as Dibs in Search of Self, Sybil, The Three Faces Of Eve and Go Ask Alice.

Whatever the reason, I had and have a terror of being “put away”, locked up somewhere.  This fear includes hospitals, group homes, prison, any place that removes my ability to walk away when I choose, and places my care in the hands of others.  As a quick example of how much this fear permeates my life, I gave birth to both my children naturally and in birthing centers, not because I have an aversion to drugs, (I had a lively and deep attraction to drugs of all kinds during my teens and early twenties – I do NOT recommend this) or because I’m a granola-eating, Birkenstocks wearing vegan. (I’m not.  Not that there’s anything wrong with anyone who might fit that description.)   No, I gave birth naturally and in birthing centers because my fear of hospitals aka institutions is so great I begin to feel real panic even writing about it.

When I had to have a partial hysterectomy last winter I informed my surgeon I wished to be the first one in and assured him I would be going home that evening.  When he suggested I might want to stay overnight at the hospital, that even in the best of circumstances I would probably NOT be released to go home, I became so agitated and visibly upset he relented and said he would do all he could to get me home that night.  And sure enough, despite being so out of it I could barely put two words together, let alone a whole cohesive sentence and had a head the size of a watermelon from having been hung upside down for more than five hours, I managed to get myself upright.  My husband, using all his strength half carried, half dragged my useless, morphine infused body out of the hospital and into the relative safety of a taxi driven by a kind, middle eastern gentleman whose upper head was encased in white cloth aka a turban, that reminded me of medical bandages.  In my drugged state I kept imagining I saw blood pooling on the white cloth and had to open a window so as not to hyperventilate and throw up.  As the taxi careened along the streets of Manhattan, I allowed my body to slump against my poor, patient husband who was busy distracting himself with the latest New York Times Crossword puzzle.  Even so, all of this was well worth the effort as I made it home and into our bed by 10:00PM that night.  Panic attack thereby averted. *Whew*

When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.

Judy Endow is a writer, a consultant, a mom, who conducts workshops on Autism related issues.  Judy is Autistic and spent several years in an institution as a teenager.  In her terrific book, Paper Words she discusses how she perceives the world by the movement and sounds of colors and writes,  “… please entertain the notion that a person who has an internally wired neurology to enable this, though a bit different from most, may not be any less intelligent, or indeed any less of a human being, than the typically wired folks, who are clearly in “The Majority” in the world-people world that we all inhabit.

As I read Judy’s powerful book I reflected on the nature of institutions, disability, aging and difference and how we humans tend to dehumanize those we believe to be weaker than ourselves, whether physically or mentally or both.   Until we can begin to embrace that which we do not understand or have experienced we cannot really know the harm we do, intentionally or not to those who must rely on others for understanding, accommodation and help.  Most of us, at some point in our life, will be dependent on another human being to have, at least some of, our needs met.  Let’s all hope we are fortunate enough to have someone who understands theirs is not a position of power, but a gift each of us can give to another, until it is our turn to receive it.

Em’s Self-Portrait – January, 2013

Self-Portrait

Group Dynamics – This Was NOT the Post I Intended to Write…

I don’t like groups.  I never have.  There’s something about group dynamics that I find more than a little frightening.  Too often groups develop an entity all their own and while it may beautifully reflect many individuals within the group, it never reflects all.  The loudest voices are often perceived as having the “best” or the “right” ideas and others who are not as loud or are just in the minority fall into line or if they don’t, are seen as threatening renegades and nonconformists.  Aspie Kid wrote an incredible post last week about something related to this, The Power of Suggestion on his terrific blog Aspie Kid: Perspectives From the Autism Spectrum.  While his post is not about group dynamics per se, it is about how easy it is to convince people of things when they perceive the source to be trustworthy or “in the know”.

Studies have been done regarding the power of suggestion and how groups can influence individuals to do and think just about anything.  Below is the famous Asch Experiment done in the 1950s; it is truly incredible, as well as troubling.  It’s important to note, this experiment has been done repeatedly, but always with neurotypicals.  I would be interested to see the results if it were done with Autistics.

More recently Kazuo Mori and Miho Arai redid the Asch Experiment but had each participant wear glasses that showed them the same image, yet each saw different things, thereby making them believe the answer they were giving was correct, unlike the original experiment where all but one participant was told to choose the same answer regardless of what they actually believed.  They also used both men and women and found that the results when using women replicated Asch’s, but did not with the men.  (That women were more likely to cave and agree with the group or majority view despite what they “knew” to be true is a whole other post!)  You can read more about that experiment ‘here‘.  Further studies showed that when the participants were acquainted with one another they were even more likely to go along with the majority than when they were strangers to each other.

Seventh grade:  I was the new girl at a new school with new kids and teachers in a new home.  I was extremely unhappy and had been for many years, though I had little self-awareness.  It was just before Easter.  There were only a few months left before summer vacation, but I couldn’t imagine how I would get through the year.  In my desire to “fit in” I told a great many lies.  I had been doing this for years.  The lies were so easy and seductive.  Words that were understood by the other kids in this small junior high school to have been fabricated.  I was shunned and ate my lunch alone by the chain link fence bordering the oval track where I excelled at running the mile, mostly because almost no one else was willing to run the mile, they were much happier running the 50 yard dash.  I found a shred of solace in running, and eating my lunch alone next to the oval track made me feel safe.  I cannot remember much of that year except that despite this I was surprised to be invited to a slumber party by one of the “in” girls.  Everyone was friendly at first and I let my guard down.  Without even meaning to I told more lies, all the while ignoring the tug in my stomach that I shouldn’t.  Lies were so comforting to me.  I preferred the lies to the truth, because I could no longer sort out what the “truth” was.   

The following morning all the girls gathered in a group and told me they wanted to talk to me.  I knew what was coming.  I froze and sat staring out the large window of the large house nestled on a hill.  I heard their voices, angry, accusatory, hurt, but it was just noise swirling around me as I gazed out that window at the fog as it slowly, slowly receded over those Northern California foothills, burnt away by the morning sun.  Each girl repeated a lie I’d told.  Each girl repeated the things I said, often behind the other’s back in my attempt to be liked, to fit in, to be like one of them.   My mind went numb.  I left my body.  Much later, I do not know how much actual time had passed as time stopped, my mother came to pick me up.  “How was the slumber party?” my mother asked.

“Fine,” I answered as the car sped away from those girls who I was clearly not like toward our home where I would at last be safe. 

In the refuge of my room later that day I felt something click deep inside.  I understood that I would never be safe.  There was nothing and nowhere I could go.  That day was the beginning of a long, painful slide into self-injury, bulimia, anorexia and addiction to quell the beast within.  There is nothing like addiction to shut the world out.  Addiction is the ultimate “lie”.  It is a living lie and betrayal of self.  I didn’t have the means to see that my actions had brought me hardship.  I did not understand yet that there was another way of being.  I didn’t have the necessary tools to guide me because I had long ago forfeited my self, there was no me to find or return to.  There was no “I”.  Addiction helped me forget the truth.

It is impossible to live in this world and not be part of a group. (Unless you are a hermit.)  We humans tend to crave companionship, whatever our neurology.  Yet we have a terrible time actually getting along peacefully with one another.  It took me thirty years to figure out a way to be with myself that I didn’t hate.  Slowly as I practice honesty, being kind and of service to others I was able to very slowly, very tentatively become a part of.  Groups can be wonderful.  Together we can accomplish and do what no individual can. I am a part of a number of groups that I have come to rely on.  But when groups become hotbeds of strife and gossip, where people forget that the groups principles are more important than any one individual’s grievance,  I know I must leave them.   I spent far too many years betraying my “self”.  I know how this ends.  And it isn’t pretty.

The Freedom Tower, taken this morning.   It represents the full scale of what we humans are capable of – to destroy or create… it’s up to each of us to decide.

Freedom Tower

Confessions From a Literal Mind

My husband is funny.  Just had to say that.  He’s a funny guy and sometimes he’s funny without meaning to be, which throws him out of funny territory and plops him directly into the hilarious camp.  Some people are like that.  Thankfully, my two kids are also funny/hilarious so there’s a great deal of laughter in our home.  Until my husband or son tells a joke.  Me and Em don’t do the joke thing, mostly because Em is more into making faces and physical comedy and I don’t “get” most jokes (I’m told this is because I tend toward literal-mindedness) and even when I do, I usually do not think they’re funny, which makes others insist that I haven’t “gotten” the joke, because, the thinking goes, if I did, I’d laugh with everyone else.  I disagree and maintain that it’s a bad joke, but this argument never goes over well, particularly to the joke teller, who’s convinced the joke they’re telling is, by the very fact that they’re telling it, hilarious.  Even if it isn’t. And it isn’t.  Trust me.

Case in point, and this is one of Richard’s favorite jokes, whenever we travel.

Random person:  “How are you?”

Richard:  “We just flew in from New York…” Beat “and boy are my arms tired.”

Me:  expressionless face.  

Richard:  Looks over at me, sees expressionless face and says, “Ba-doom, boom!”

Random person:  Doubled over with laughter, “Oh boy I haven’t heard that one in a while.”

Me:  Look of confusion.  “Wait, what?”  Watches laughing husband and random person.  “What’s the punch line?”

Random person and husband:  As though choreographed, swivel their heads to face me, look at each other, then burst into peels of renewed laughter.

Me:  View of my back as I walk away…  Sometimes I’ll shake my head in an exaggerated display of my (feigned) contempt.

So I have a confession, because… well why not confess these things (?) I’ve nothing to hide…  I do “get” the joke, intellectually, I understand the play on words, I just don’t feel anything remotely like laughter surging through my body because of those words and truthfully, that joke, in my opinion, as well as most others like it are “made” funny with a straight man.  So I, being the thoughtful and generous soul that I am, feel obligated to provide this.

You’re welcome.  *Big grin*

Signed:  “Straight man” aka Ariane

Laura B., Barb P., Emma (ever the performer) and Me (trying hard to keep a straight face)

2GroupShot

Living in the Grey

No, this post has nothing to do with porn, soft, hard or anything in between.  In fact, this post is not about sex at all.   There will not be any numbers or shades or subtle, implied meanings of anything remotely titillating.  For those who were hoping otherwise, best to move along…

However, I do have a confession to make.  I tend toward extreme thinking.  An example, if someone cuts me off while I’m waiting for the subway, grabbing the one remaining, unoccupied seat, forcing me to stand, I can get into some pretty abysmal thinking.  I am likely to assume the day is cursed, as I engage in heinous thinking about the person who “stole” MY seat, to apocalyptic views about the nature of human beings.  I know this about myself.  I know I have a difficult time living in the soft, greyness of life, while rejecting the glaring, yet far more exciting black and white tragedy or ecstasy of my circumstances.

For years I felt mildly victimized by Em’s diagnosis.  I felt no one really understood or could possibly understand and any who suggested otherwise offended me.  Then I found Autistic adults who were not living the tragedy I had assumed was my daughter’s inevitable future.  In fact, these adults were interesting, smart, some spoke, some did not, others spoke on occasion, some communicated through typing, others communicated through typing with a facilitator, some had careers, others didn’t, some were in relationships, others weren’t, some had children, others did not.  Some have become friends, one in particular has become a close friend, someone I seek out, think about, want to spend time with, look forward to talking to and miss when our schedules do not allow us to connect.  In knowing her I’ve been able to dispense with the “victimized” mindset.  She’s helped me enormously, not just in giving me a better, more tempered view of autism and breaking down some of the more harmful stereotypes and beliefs I once held about autism and Autistic people, but in what it means to be human.

I have gone from feeling a low-grade sense of sorrow for my circumstances to feeling fortunate and grateful for my life and family.  I don’t mean that everything is perfection and that we never encounter moments of sadness or unhappiness, I just mean that I no longer pin my dark moods and feelings on “autism”.  In fact, I feel ridiculously fortunate.  I have met more fascinating people in the past year than I ever imagined possible.  I no longer wonder what life would be like had I not had an autistic child.  I am grateful for the life I have.  I am grateful for both my children and I’m grateful for my friendships.  I find I am living more and more often in that comfortable grey area of non-extremes.  (Please feel free to remind me of this post when I write something less “evolved”.)

And that woman on the subway, who for the past four years has shot in front of me to grab the only remaining unoccupied seat on more mornings than I can count?  I wish her well.  I even gave up my seat, so she could sit this morning AND I didn’t feel smug or resentful; I just kept reading my email.  Who knows?  Tomorrow I may even muster up the courage to smile at her.  Because you know what?  Life is just too damn short.  Besides I’m growing fond of the grey.

Christmas Eve Dinner – 2012

“I might be you.”

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  “You.” Take a breath and let that in.  “Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding

Impatience and Expectations

I’m impatient.  I know this about myself.  Impatience serves me to do a great many things.  It propels me to take action rather than not.  It makes me push harder, try harder.  My impatience, which usually begins with tremendous optimism can descend rapidly into disappointment and discouragement.  Fortunately I am also fiercely determined and dogged in my reluctance to give up which helps mitigate some of my impatience or maybe it just makes me confused. 😕

However, there are a great many things that are not helped by impatience, things like learning a language, learning to type or learning almost any new skill.  These are things that take time, practice and patience.  So I have to recognize this and continue despite my impatience.  This comes up over and over as I work with my daughter.  But in working with her, I’ve also come to recognize something else and that is my expectations.  Huge expectations, coupled with impatience can do harm.  I see that.  I’ve been very aware of how it affects me, but how does it affect Em?

I am learning how to support Em in her communication.  For example we will read a story together, such as a book Emma chose recently entitled, Who Pooped in the Park?  The story details a family outing where the two kids are upset when they don’t see a great many wild animals on their hike, but learn to identify what animals live in the area by the markings they leave.  During our session together I asked Em, “What were some of the animals the family identified?  One animal starts with the letter b.”  Emma then typed, “There was a bear and ciyoty and a deer.”   Other than misspelling coyote, this was a terrific answer and correct.  We went on to discuss another name for animal poop, which is scat and that all living things produce “waste” of some kind.  After our session was over, Richard asked, “So how did it go?”

“It was fine,” I answered.

“It sounded great!” Richard said with enthusiasm.

“Yeah, I guess,” I replied.  And then I had a tiny flicker of realization.  I was feeling disappointed in our session.  I was hoping for some brilliant, philosophical insight.  I was hoping that we would have a conversation that blew my mind and when I realized that, I also realized that my desire, my expectations, my impatience had caused me to not fully take in how terrific our session had been.  It also made me see how my response may have felt to Emma.  Here she was working hard, doing something that does not come easily and doing it really, really well, yet I had not responded with the kind of unbridled enthusiasm I would have hoped for had our roles been reversed.

During our next session we talked about her birthday, which she is very excited about, and the party and various events we’ve planned for her.  I tried hard to be aware of my response to what she was typing.  I became increasingly aware of my expectations as they arose and did my best to silently acknowledge them before responding with genuine enthusiasm and appreciation for Em’s work.  As a result our session was more fun for both of us.  Later when I spoke to a friend about all of this he pointed out that most communication is not wildly brilliant, philosophical or even necessarily enlightening.  And of course, he’s right.  The majority of our communication with one another is about pretty basic stuff.  Learning how to communicate basic things is relevant and important.  But my impatience and expectations make me forget that.

I have learned over the years that if I want to change a behavior I need to have awareness that I’m doing whatever it is, I then need to have some degree of acceptance that I’m doing it before I can begin to make little changes to it.  Those little changes repeated and added up can, over time, create bigger changes.  Admitting aloud I am doing whatever it is can be very helpful as well.  Without taking these steps however, I have no hope of changing the way I do something.

There’s a great deal of talk about autism and how our children and autistic adults need to work on a whole range of things, but there isn’t a great deal of conversation in the general population about our own neurological deficiencies.  It seems to me that if we are going to continue to have this ongoing discussion of deficits, it’s only fair that we begin to detail our own as well.  Now that’s a conversation I look forward to having.  And while we’re at it, let’s include the positive aspects of Autistic neurology as well, because a little balance is a good thing!

Sled

Doing the Best I Can…

Yesterday I was targeted by someone whose name I am not going to divulge because doing so will only further engagement and unnecessary dialogue.  I am going to keep this about my reaction to being attacked and will not engage in a counter attack.  One of the things I have learned over the years is that when someone attacks, my knee jerk response is to attack back, but this never actually does anything to further the conversation, encourage discussion or an exchange of ideas.  Nothing changes when two people angrily engage in self-righteous, self-justified shouting matches.  So why do it?

Sadly, within any community, positions are taken, an “us” and “them” mentality which serves to separate each other from the very people we appear to want to engage.  I do not completely understand this desire by some to engage others with their anger.  However I do know first hand the feeling of frustration when I have believed something and had those beliefs questioned, judged or argued with.  When someone says with absolute conviction that they know for a fact that a certain therapy, treatment or way of supporting another does or does not work, I figure it’s worth investigating.  I do my best to look at the pros and cons, I try to read the various scientific studies, the anecdotal stories, and control studies if there have been any.  I take into account how many people were used in the study, I look at who conducted the study and whether there were any conflicts of interest in the study’s results.  I read any controversy surrounding the therapy.

If I know someone personally who is using whatever the therapy, treatment or support is, I reach out to them, ask them questions and observe.  If what I am observing counters the conclusions of some of the scientific studies done, I take that into account and look at why that might be.  Beyond wanting to do what will prove best for my daughter I try to remain open to both sides.  However, if a number of Autistic people have PTSD because of a particular therapy or speak out about it with their reasons why, I listen to their accounts and place more weight in their experiences than I do in studies conducted by neurotypical “experts”.  I also listen to those who are Autistic and have found something particularly helpful, even if many neurotypicals suggest otherwise.

These are the things I do.  Others may have different approaches, but this is what has proven most helpful for me.  When someone then attacks me for doing a particular therapy, treatment or support with viciousness, it hurts, but it does not make me change my opinion, in fact it does the opposite.  When someone personally attacks me with sarcasm, condescension and aggression it serves to make me wonder why they would do so.  When they then back their vitriolic, venomous statements by saying that “science” is behind them and that I cannot possibly have read the studies they cite, when they dismiss opposing studies as being “shoddy” and “poorly” done as non-science or “pseudoscience”, there is no point in responding.  When they then further their comments by saying that I am being “unethical” and suggest that by engaging in such support I am hurting those who cannot speak by putting words in their mouth, it crosses the line of being about ideas, opinions, science or anything else, it is a personal attack.

I come here day after day and share my thoughts, feelings, views.  I try to be honest, above all else and in doing so open myself up to attack.  I know that.  I cannot do this any other way.  I am vulnerable in a way that those who attack me are not.  That’s okay.  No one is forcing me to write a blog or to be as honest as I can be.  These are the decisions I’ve made.  I try hard to keep my side of the street clean, as they say.  Some days I’m more successful at that than others, but I always keep showing up and trying as best I can.  In the end that’s all any of us can do.

Unrelated photograph taken Christmas Day on the ranch

Christmas Day

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The Impact of Fearing Autism

Last night I spoke with my brother by phone.  He is unable to travel.  His voice was so raspy, his breathing slow and labored, had I not known it was my brother I was speaking to, I would not have been able to guess from the sound of his voice.  He wasn’t able to complete a sentence without pausing to take a breath.  It was clear listening to him that the act of talking was incredibly difficult and painful.  When we said good-bye to each other I was overcome with emotion.

My brother is very slowly recovering from pertussis, more familiarly known as whooping-cough.  Because so many parents have chosen not to vaccinate their children for fear that vaccinations cause autism, whooping-cough is on the rise.  I’m including some links ‘here‘ and ‘here‘, for those of you who may not be aware of just how serious and deadly whooping-cough is, not just to our children, but to teenagers and adults too.  This is the other side of not vaccinating, the side so many do not consider.  People of all ages are getting sick and even dying of diseases most of us assumed had been eradicated long ago.  Whooping cough, once unheard of, is now on the rise.  In my brother’s case, his coughing was so extreme he would vomit, was unable to breathe and speaking became impossible.  Fortunately he is slowly getting better, but whooping-cough can take more than three months to recover from, for those lucky enough to recover at all.

My children are vaccinated.  I am vaccinated.  I have had moments in the past when I wondered if there was a connection between vaccines and autism.  I never believed vaccines caused autism, but I did wonder if it exacerbated pre-existing conditions.  I no longer wonder because I stopped fearing autism and listening to those who would have us fear it and those who are Autistic.  And it seems this is what it comes down to.  When we fear “autism” so much that we are willing to put our child’s life at risk because of those fears, we must, as a society, look at what we are saying and believing.  Organizations intent on fueling those fears for monetary gain are being dishonest with themselves when they refuse to see the connection.  Adults, teenagers, children and babies are dying from preventable diseases because of people’s fears regarding causation and vaccinations.

When a parent makes the decision to not vaccinate their child they are not just putting their own child at risk for developing life threatening diseases, they are putting all of our lives at risk.  It’s important that we are clear about this.  None of us live in a bubble no matter how careful we might believe ourselves to be.  The decisions we make affect more than just ourselves and our families.  The decisions we make have larger ramifications that impact everyone we come into contact with.

For those of you on the fence regarding vaccinations – I understand the dilemma.  I understand how difficult it is.  I understand how debilitating fear can be.  Really I do.  I’ve felt it.  But in the end your decision comes down to this – are you willing to put not only your child’s life at risk, but your own and every person’s life you come into contact with?

Completely unrelated photograph taken yesterday of the rocky mountains

Perfection

 

Dreams of a New World…

Moral dilemmas continue to plague…  I have never seen myself as one of those mothers who poured all of her competitive spirit into shamelessly promoting her child.  A kind of stage mom gone rogue, using her kid’s exuberant charm and/or talents to gain recognition from thousands of strangers.  A kind of warped narcissistic mirror of neediness, an adult version of a child’s plea, Look at me!  Look at me!  Yet, in light of recent events with parents blogging about their children, posting photos, using their real names, telling excruciatingly personal stories, many not kind or endearing, while supposedly illuminating their child’s and their struggles for all the world to read, judge and comment on as a way to advocate for better services, it’s impossible for me not to reflect on what exactly am I doing here and how is what I’m doing so dissimilar?

I began this blog as a record, of what I hoped and expected would be, Em’s progress after a series of radical stem cell treatments.  I didn’t think or expect this would be read by anyone other than family and friends and those who might be thinking of embarking on similar radical treatments to “cure” their Autistic child.  At the time, April 2010, I wasn’t thinking ahead, I didn’t consider the broader implications, I thought of this space, this blank page, as a place I could come to record what I saw and hoped for, while believing that whatever it was, it would be “miraculous”.

What I didn’t know, couldn’t have known, was that the miracle that occurred ended up having nothing to do with stem cell treatments or any other treatment or therapy.  The miracle has been my own evolution, a kind of 180 degree turn from where I once was in my thinking, in my attitude and in my expectations about autism and what it means to be autistic.  And while there is no doubt that my daughter continues to make wonderful, steady progress, it is not as the result of various remedies and treatments we embarked upon, but rather as a direct result of NOT engaging in those various so-called “therapies”.   What harm we may have done to our daughter because of those treatments, bio-medical and otherwise, is something we will never know, but must live with the uncertainty for the rest of our lives.  

So why write about all of this?  Does the world really need another parent blog about their kid?  Probably not.  However, and here is where things get muddy for me, every time I think about ending this blog, every time I think I can’t keep doing this, it’s not right, it’s not fair to my daughter, it’s not for me to write about her, it’s not for me to broadcast what she says and/or does, it’s not for me to post photos of her, these are not my truths, they are hers to tell if and when she can, every time I think along these lines I wonder if I would have done things differently had I read a blog of someone’s journey that was similar to mine?  Would I have still gone to such drastic lengths?

Is it possible a child’s life might be made just a little easier because of something I write or say here?  Is that just ridiculously grandiose to even think in these terms?  And yet, I have to go back to my own history of having an eating disorder for more than 2o years and the help I was given from hearing others candid, uncensored stories of hope and recovery.  Those stories that resonated were the ones I clung to so desperately during those first painful and terrifying years as I tried to change my life.  Years when making it through a single day without binging and puking was considered a “good” day.  I needed those stories.  Had those people NOT told them I doubt very much I would have gotten through.  I don’t mean that to sound self-congratulatory, it’s actually the opposite, I could not have gotten to where I am without all those people, all those stories, all those people who reached out to me and said, “it’s okay, you can do this.  Here’s my number, give me a call if you’re in trouble.”  I learned to lean on people, I learned that I didn’t have all the answers, I learned that there were more things I couldn’t control than I could.  I learned what it meant to accept what is, the here and now.  I learned about being present and that I hold my breath when I’m fearful and I learned that I wasn’t alone.

So in the end, this blog is no longer a document of “my daughter’s journey through a childhood of autism” as I once described it.  This blog is a document of my journey as a parent and as a human being and how autism has changed my views.  It is a far more beautiful and complex world than I ever imagined or dreamed possible.  It is a world that is evolving, far too slowly for my taste, but I have seen glimmers of what is possible.  A world where we do not segregate, where ALL people are treated as equals, not just as an idea, but in reality, a world where everyone is fortunate enough to have an Autistic person in their life.  A world where autism is no longer feared, but is embraced.

Sunset

Let Us All Be Safe

My favorite memories of Christmas are those spent at my grandmother’s house in Colorado when I was a little girl.   Every morning I would wake to see the snow covered mountains outside my bedroom window and snuggle deeper beneath the warmth and weight of the woolen blankets on my bed.  The smell of freshly baked orange buns and cinnamon rolls filled the air.  I grew up in Northern California not far from the Pacific ocean, so snow was a novelty and cause for great excitement.  The thrill of being in the mountains in Colorado during Christmas was something I anticipated with great excitement and impatience.   My grandmother always bought my sister and I a dirndl, the traditional German dress, to wear on Christmas eve, while my father, who was Swiss wore a pair of black leather lederhosen with white socks embroidered with green foliage, worn with black velvet slippers and a black or red cashmere turtleneck sweater.  Picture the Sound of Music with Christopher Plummer as my father and me as the youngest child, Gretyl and you get an image of how we looked on Christmas eve, though the similarities pretty much stop there.

When I had my two children I had an idea that I would dress them in lederhosen  and a dirndl, and over the Christmas holidays I would stay up late making yeast breads of various kinds and baking them early the next morning so that my children could have similar memories.  However this never came to be, though Em would probably love wearing a dirndl as she loves dressing up, just as I did when I was her age.   But as a parent I’ve learned that many of my memories do not need to be repeated, that my children will have their own memories and that they do not match mine is as it should be.  I have come to see that this is a good thing.   I had so many ideas about what it was going to be like to be a parent and almost all those ideas have proven wrong in the best possible way.  Letting go of my ideas about how anything should be has been a great gift, not just in parenting, but in life.  I did not come to this easily or without a fight.  And I still forget this truth often.

But I am grateful when I remember.   There is so much I cannot control.  In fact the only thing I have within my control is my own behavior.  I keep coming back to that over and over again.  I cannot control other people’s memories or behavior or prejudices or actions.  The only person I have any control over is me.  For today, let me behave well.  Let me be kind, loving and generous.  Let me give more than I take.  Let me help more than hinder.  Let me be the parent my children need and not the one I thought I should/would/was supposed to be.  And let us all be safe.

December 2009

xmas family-09

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