Monthly Archives: August 2013

Memories Evoked

I enter the subway car.  To my delight there is an empty seat near the door.  I sit, rummage through my bag for my book and begin reading from where I left off, but the words are blurry and I cannot concentrate.  I am aware of a powerful odor emanating from the person seated next to me.  I close my eyes and try to concentrate on breathing through my mouth.  My stomach clenches and my eyes begin to water.

I’m five years old.  Mrs. Williams is rustling about in the other room.  The pain in my chest is as much from the ache I feel because my parents have left on their yearly trip as it is from my fear of the woman who has been hired to take care of us for the next few weeks.  Mrs. Williams with her coiffed hair and antiseptic smell, everything about her is no nonsense, business like, a kind of grim resignation that oozes from her every pore.  When angry she uses her hand, like a paddle, it comes down swift and seemingly without emotion, as though the pain I feel upon contact has nothing to do with anything: arbitrary, remote, senseless.

I hate Mrs. Williams and my anxiety and sadness that my parents have left us, even for only a few weeks adds to my hatred of her.  She crinkles and rustles when she moves, her skin hangs from her body like an ill-fitted suit, she smells of soap and perfume that make me nauseous.  She is stocky and seems well rooted to the ground, her movements are steady and purposeful.  She rides out the time my parents are gone like a convict doing time.  I can find nothing pleasant about her.  Just thinking about her fills me with fear.   Her dislike for me and my sister is all the more apparent when my brothers are around as she obviously dotes on them and shuns us.  If ever there is a dispute, it is my fault, no matter that I am the youngest with siblings a full eight and six years older than me.   

We are told she had a son sent to Vietnam who never returned.  We are told it is because of this son that she adores my brothers.  I take this information in stride.  It is fact.  I am representative of something unwanted, something I do not and cannot understand.  She is particularly concerned about my bowel movements.  She takes note of them, even going so far as to stand guard outside the bathroom listening for sounds of success.  As I sit on the toilet I imagine her ear pressed to the door.  Why this is important is something I can’t figure out, but that it is, is evident by the reports she feels compelled to give my older siblings.  Now my brothers and sister are on high alert.  My bodily functions are examined, discussed, they have become a topic.  The more I am closely observed the more  anxious and fearful I become.   

I grip my book tightly and try hard to breathe out of my mouth. I glance over at the woman next to me.  Her eyes are closed and I realize she is asleep.  As the train careens through the darkness, her body sways with its motion.  The train turns.  She leans into me, the smell of soap, antiseptic, and some other odor I cannot identify, but that reminds me of those weeks once a year when my parents left us in the hands of someone who should not have been caring for small children, is over powering.  She is unaware of me or the memories her presence has evoked.

I think of my children.  I see the look of anxiety on my daughter’s face when she says, “No, not going to Katie’s class.  That is the old school.  Emma goes to new school.  Emma goes to new school with Mommy.”  And all I can hope for is that her new school will not be staffed by anyone whose presence gives her cause to remember them decades later with anxiety and a feeling of plummeting through an endless darkness.

Visiting the new school

New School

Presuming Competence & Expectations

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

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

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

Breathing is good.

 

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

 

Speaking vs Typing

At an Autism Conference last month someone asked my daughter “Have you ever been to Australia?”  Em immediately answered “Yes!”  Yet when this person held up a laminated card with two boxes, one red with the word NO and the other box green with the word YES and asked the same question, Em promptly pointed to the red box with the word “NO”.  When asked what she had for breakfast that morning, she answered, “Vanilla cake!” but when asked the same question and asked to respond by typing she wrote, “I ate cereal, toast and yogurt.”

Many people ask me why we are spending so much time and energy learning to support Emma’s typing.  The most common two questions I’m asked regarding this are – why do you need to support her at all when she can use her two index fingers to type independently  (I will write a separate post on that question) and why do you encourage her to type when she does and can speak?

Ironically I have yet to find accurate words to describe my daughter’s speech.  I’ve said things like, “Her speech is unreliable” or “She can use language, but it often does not reflect what she really means to say” or “When she types we get a more accurate idea of what she intends to say, wants, or is thinking.”  But I’m never sure people understand what I mean or if they do understand, whether it helps them when they try to talk to someone like Emma.  (I have since met a great many people who have some language, but it is “unreliable” in that they will say things that are not necessarily the answer they mean or the words they meant to say.)  Inaccurate speech is not because the person means to evade or is willfully not telling the truth, but is indicative of specific brain function.  Lots of speech therapy, concentrating on spoken language, did not help Emma.

By the way verbal scripts serve as a default and come into play often in context to what is going on, but sometimes they are triggered by a detail.  The script can appear to have nothing to do with the topic being discussed.  For example we had an electrical storm the other night which reminds Emma of the fireworks on both New Year’s Eve and the Fourth of July.  Emma calls both firework displays and electrical storms, “thunder fireworks.”  She also calls rain storms and electrical storms, “firework bubbles” or “motorcycle bubbles”.  But if you didn’t know any of this and were with her when it began to rain, you probably would not understand the association when she said, “Ohhh, look!  It’s motorcycle bubbles!” and then pointed cheerfully out the window.

If I ask, “Em do you want to make vanilla cake?” Em will ecstatically respond, “Yes!”  She happens to love nothing more than vanilla cake with vanilla frosting.  I know this, no further questions are needed.  However, if I ask her, “Em what did you eat for dinner last night?” She might respond with, “Vanilla cake!” or she might respond with what she actually ate.  If I ask her why she was crying on the school bus, she might say, “You cannot scream!  You cannot scream and bite on the bus.  If you bite, no hitting!”  or some other equally cryptic answer that does not answer the question of why, though it does give me a good idea of what was said to her and that she became so upset she began to bite herself.

However if I ask her to type her answer, she might type, “A boy was scratching my seat.  I asked him to stop, but he kept scratching.  He made me mad.  The matron said, no kicking.  Emma’s sad, Emma bit her arm. I don’t like that boy.”  If pressed further, she will type his name and I will be able to tell the bus matron that Emma should not be seated near the boy whose name is X.  Problem solved.  The point is, when typing, Emma will write things she does not say. But to people who are unfamiliar with someone like this, they find it confusing.

When I showed Emma this photograph just now and asked, “what do you see?”  She answered, “Good!”  We went horseback riding while visiting my sister last week.  And it was.  It was “good!”

Horseback riding

People: Interpreting and Responding

Two days ago Emma told me I could write about people’s reactions to her, though it is more accurate to say this post is about my reactions to what I perceive to be people’s reactions.   I asked Em if I could write about that too and she gave me her permission.  My feelings are not necessarily the same as my daughter’s.  I may perceive someone’s curiosity and even confusion as annoyance or impatience or even outright anger, while Emma remains in the moment, without judgment or adding layers of interpretation to people’s responses to her.  Someone who makes a comment or tries to engage her in conversation, a person she then walks away from or answers with, “Emmaemmaemma!” I may decide is judging her harshly or is drawing conclusions about her that they may not be.  Sometimes I decide my daughter is saddened by the reactions she gets from others, yet when asked, she tells me she liked that person and felt happy meeting them.

So it was, a  few nights ago when a dozen or so people came over for dinner.  I knew only one of them, the rest being complete strangers.  Typically at any gathering, either here or at our home in New York City, we know almost everyone who enters our home.   And they, in turn, have met, or at least know we have two children.  Whatever happens is usually met with smiles and kindness.  People might ask questions, some will actively seek to engage, others do not attempt to, but all are friendly and take whatever happens in stride.  We have wonderful friends, and those who are not kind, are not our friends…  but this group was made up of people I’d never met and so when Emma said she wanted to sit at the dinner table with them, I felt a certain degree of trepidation.

I imagined they were confused by her and it felt awful.  I stood nearby, ready to interpret, ready to intervene, ready to take over, ready to control the situation.  But my daughter does not need me to take over, she’s perfectly capable of interacting with people without my intervention.  At one point she thrust her hand out blocking one woman’s view of her, so that the woman could not see Emma, or more accurately, Emma could not see her and the woman immediately made it into a game of peering over and under Emma’s hand.  Emma smiled and began to laugh.  “Don’t look at me!” she said in delight.  The woman stopped and made a big point of looking away.  Emma giggled.

I went into the kitchen briefly and when I returned, one woman I imagined, looked worried.  Another guest I thought seemed annoyed or maybe nervous.  I am sensitive.  I know this about myself.  I think I can “feel” people’s energy, and often I can, but sometimes I decide I know what others are thinking and feeling and I’m wrong.  I have always been hyper aware of people’s vibes, sensing their emotional state, which has caused me problems when I’ve been wrong, as well as kept me safe, when I’ve been correct.

After everyone left, Emma said to me, “Have another dinner party tomorrow?”

“Did you have a good time, Em?”  I asked.

“Yeah!”

“How did you feel when that woman was looking at you and you held your hand out blocking her view of you?”  I asked.

“Playing don’t look at me game!”  Emma answered, laughing.

“Was that fun?” I said, wanting to make sure she was okay with the interaction that had taken place.

“Yeah!  Another dinner party tomorrow!!”

After Emma went to sleep, I lay awake, feeling troubled.  Emma’s experience of people is not the same as mine.  I am fearful of people, or I tend to be.  My daughter does not share my fears.  I sense people’s intent and often believe what I’m sensing, as though it were fact.  I hear and sense people’s words, often read between the lines, take their words, add my interpretation of them from the way they hold themselves, the tone they use, the way they look and draw conclusions from all these factors.  My daughter does not do what I do.  I’m not sure how she interprets others, but I do know it is different from the way I do.  Both my children interpret the world differently from me.  This is a good thing.

Neither of them are as fearful as I am.  Neither of them shrink in fear when someone is angry as I do.  Neither of them physically pull away when someone raises their voice as I do.  I have a physical response to what I perceive people are thinking and feeling.  I feel slightly nauseous when I think someone is angry, even if they are not, or if they’re angry, but not about anything to do with me, I still feel uneasy.  If someone seems particularly upset, my hands will shake, it’s hard for me to speak.  If I become angry, my face will turn red, my whole body feels hot and I will begin to shake.  If very upset I cannot form coherent sentences.  Sometimes, whether angry or hurt, I feel pain in my chest and it becomes hard to swallow, my breathing becomes shallow and it feels as though there is less oxygen in the room.  All of these things are ways of adapting, I understand this, but I also am relieved when I see both my children not interpreting people and therefore not responding to a perception of people’s emotions as I do.

Performing for guestsPerforming

Routines Disrupted

We have been traveling.  Our cell phone and internet coverage has been spotty and in some places we’ve had none at all.  As a result my routine, which usually means I wake up when Emma comes into our room, (anywhere from 5:15AM – 6:00AM) get dressed and go to my studio where I begin the day by writing, has been disrupted.  The beautiful thing about traveling is that there is no room for routines.  We’ve spent a few days with my sister, gone on a rafting trip down the Colorado River, gone horseback riding, gotten lost, spent time with one of my brothers, hung out with one of my cousins, (I have a large and sprawling family that live all over the United States and even world, and my mother’s house is often the only place we get to see one another.)  So it’s been really wonderful and lots of fun.

When I have gotten up early enough to write AND the internet is cooperating, I have begun a post only to have Em say she doesn’t want me to write about the topic I began writing about.  In fact, I have started three different posts, and Em has shot down every single one of them.  This could be seen as a bad thing, but I don’t view it that way.  I see this as an incredibly good, no, a great thing.  The first time I told her what I was starting to write about and asked her permission, she said no, I was surprised.  The second time I began writing about something else and asked her permission, I was surprised and amused when she typed “no, I do not want you to write that.”  The third time I thought – this is great!  Great because this blog began with no thought of her opinion and has evolved to represent only what she agrees to and may well end because of her thoughts and opinions.

What all of this means is that I haven’t been writing every morning.

So I will end with something Em typed to me the other day and told me I could post.  She typed, “Language is an awkward way to communicate.”  She would not elaborate further and why would she, as that sentence says it all.

The Rocky Mountains

View From Cabin

The Quest

The quest for various potions and remedies kept the mother  separate from her child, though she did not know this at the time.  The mother believed it a valiant quest, and prided herself in her vigilance and determination.  She would single-handedly conquer what had thus far proven unconquerable to vast numbers of scientists, neurologists, neuropharmacologists, researchers and all those who had devoted their lives to finding a cure for autism.  She would save her daughter and she would prevail.  Call it arrogance, a lack of humility or simply being unable to understand; she would reflect on her own near miss with death as justification for her belief in her ability to do what no one else to date had.  (And yes, she began to forget that her sobriety and abstinence were not due to will power or because she tried harder, but was because of the help she received from a larger group/ a power greater than herself.)  All thoughts of something being more powerful than herself were temporarily forgotten, or put on hold, or, depending on the day, justified as being part of what she was trying to do.  As I said before, she was veering from the path laid out for her by thousands of addicts who had years of sobriety and abstinence and practiced humility, honesty, openness, willingness and acceptance as the basic tenets of their ability to stay clean one day at a time.

“Courage to change the things I can…”  she would often repeat this to herself during particularly tough times, neither saying the first part, “Grant me the serenity to accept the things I cannot change,” nor the last, “and wisdom to know the difference.”  She believed herself to be courageous.  She knew herself to be courageous.  And she had learned over the years how to tap into her innate kindness, to foster it, encourage it and nurture it, though in her quest for a cure she felt increasingly out of touch with all that and began to struggle mightily with what it meant to take “the next right action”  or know what it meant to know any will other than her own.

Whether there is a G-O-D piece to all this is not something I can speak of, nor can she, as this is a word that never brought solace, so in the midst of all of this she abandoned even saying the word and stopped trying to make sense of what it may or may not mean.  She did, however, believe in something larger than herself, a power whose meaning shifted over the years and eventually evolved to mean – kindness, love, appreciation, gratitude – these were the things she knew to do and act upon when feelings began to feel factual, when feelings served to confuse her and make her believe them, despite what was happening and what she was witnessing.  Acts of kindness were the mainstay of her “practice” for no other reason than she knew her life was better when practicing kindness than when she did not.

So it was not a leap for her to believe that finding a cure for all that ailed her daughter was an act of kindness.   It’s important that I interject here that to this girl who had grown into a woman, had spent more than two decades of her life being an addict, found abstinence and sobriety through another way of being in this world, became a mother to two beautiful children, a “cure” meant removing all those things that caused her daughter pain.  A cure meant that her daughter would be able to carry on a conversation, the way non-autistic children do, that she would not have GI issues, she would not have sensitivities to texture and noise and pain, but that she would be relieved of all of that.  She told herself these were all things her daughter would want to have removed and be “cured” of if only she could tell her.  The mother believed this wholeheartedly and comforted herself that she was doing the right thing.  The only thing.  The best thing.  Not for a moment did she think of a “cure” as an eradication of her child, but more a version of her child.  A kind of fantasy, similar to believing in Santa Claus, of who her child would be if she were relieved of all or most of her physical pain and had the ability to get along in society and this world with ease.

Once Upon A Time (Part 3)

Part one and two are ‘here‘ and ‘here‘.

So this woman who was once a troubled girl, now the mother to two small children, one of whom was a beautiful little girl with curly white/blonde locks and chubby cheeks and dimpled knees, wondered how she ever gave birth to such perfection.  She was filled with gratitude and felt each of her children were gifts, tiny gifts that she was being given the opportunity to influence and even direct, but who were their own people, with their own temperaments and personalities, unique and wonderful in their own right.  She believed this fiercely.  But do not forget, this woman lived for many years of her adult life, prior to giving birth to her two wonderful children, believing she was bad.  She imagined that inside of her there was darkness, as though there was a bad seed deep within her soul and for many, many years she had tried to purge that badness from her being.  She believed she needed to be “fixed” and that left to her own devices she was fundamentally flawed and that if people got to know her, they too would learn this truth about her and it was only a matter of time before she was found out until others who had once felt similarly about themselves, convinced her that this was untrue.  These people showed her over time that in fact there was tremendous goodness within her and they taught her how to nurture that goodness and how to behave in ways that fostered it and encouraged it to grow and even flourish.

But then, now years later, she saw aspects of herself in her daughter.  Behaviors she used to do, but no longer did.  Her daughter loved to look at photographs and there were a great many to view.  Her daughter liked to sit on the floor with more than a hundred photographs piled in front of her and quickly scan them.  If one was missing, her daughter knew instantly and began to howl in great distress.  The mother watched in confusion as this scene unfurled.  The daughter, perfectly happy one minute, and then in terrible agony the next could not be consoled and would hurt herself by punching herself in the face or biting her hand or arm.  And something inside the mother clicked.  She recognized this desire to control her pain.  It took her back to a time when she needed things to be a certain way and when they were not she felt her entire life was unraveling and that her very existence was put into jeopardy and the only release from the horror was to hurt herself.  There was a kind of twisted logic to all of this, her self-induced pain, a pain that at least she could control, though awful, was not as terrible as her rampant and erratic feelings and somewhere along the way that self-induced pain made her feel she could endure, at least for a little while.

Now here was her daughter behaving, it seemed to her, in similar ways, expressing the agony she once knew so intimately.  She had no words to describe what she was witnessing, but she thought she could feel what her daughter was feeling, the despair, the pain, the fear that if the photograph was not immediately found she might die.  The mother believed this was what her daughter was going through and because she had lived through similar feelings she thought she would be able to help her.  She would provide her with the same sort of safety net she had been given.  A place to land, as it were, a safe space where her daughter could feel comforted, except that the things she said and did, did not provide her daughter with the comfort the mother expected and hoped she would feel.

You see, the mother forgot that her daughter was not a mirror of herself.  The mother forgot the thing that she knew when she gave birth to each of her children – that they were their own unique beings, quite separate and individual from anyone else.  She forgot all of this in her fear and worry over what she was witnessing and imagined her child was feeling and doing.  So she began to look outside herself for answers.  People, many, many people told her that they knew what would help and she listened to them.  These people spoke of her daughter using language all too familiar to the mother.  They used words like “broken,” “disorders,” “pervasive” and likened her neurology to cancer, which to the mother sounded a great deal like what she once thought of herself.  They said her daughter was part of an epidemic and that various methodologies would “treat” her disorder and might even reverse and cure her if done quickly and everyday for many, many hours.  The mother listened to all of these people and nodded her head as these people put into words what she had once believed to be true about herself.

Had she done this to her child?  Had she somehow passed along the worst aspects of herself to this beautiful, innocent child.  Was this some sort of karmic payback for all those years the mother had spent living a selfish, self-involved life?  Was her daughter the direct result of every mistake she’d made?  Was this really how life worked?  She could not believe this, at least not logically.  She refused to believe her daughter was being sacrificed for the sins of her mother.  She refused to believe there was some greater omnipotent power that would cause her daughter so much physical, emotional and psychic pain and yet she was terribly, terribly confused and somewhere she could not fully let herself off the hook.  Somewhere, unconsciously, she believed she was to blame for all that was causing her child pain and turmoil.  And if she was to blame, then she knew she, and she alone must make it right.

(To be continued) contemplation

There Once Was A Girl (Cont’d)

The first part is ‘here‘.

This woman, who was once a girl, learned a great many things once she stopped trying not to feel.  This was a huge surprise to her as she believed she already knew a great deal.  She learned that people terrified her for they were capable of doing tremendous harm and she came to realize she had spent many years avoiding all people as a result.  Most of her pain in her adult life came from the expectations she held and not from the actual people or things they did or didn’t do.  She learned that no one person could ever be all she wanted and hoped for, but that a group of people could.  She learned that a community with a shared goal was more important than individual grievances and that her ego often pushed her from the path she’d chosen.

She met a wonderfully, flawed human and together they had two beautiful children.  With each child her world expanded and grew.  She often reflected on all she’d learned during those terrible years of her earlier life and tried her best to apply what she was learning to her new life as a parent.  But her youngest child, a strong, independent, baby girl who held an uncanny resemblance to her mother had a dreadful time tolerating certain feelings, sensations and the world.  She could not communicate through words and her mother watched her in helpless despair as she saw herself, her early self, her former self reflected in her child’s upset and frustration.  The mother would do anything to take that pain away so her daughter would not have to go through what her mother once had.  The mother would walk to the ends of this earth if it meant she could alleviate even some of her daughter’s massive physical and emotional discomfort.

And so, without even realizing it, the mother veered off the path laid out for her by so many others.  She did not begin using substances again, but slowly over time, she found herself moving away from one of the key tenets of her new life –  she began to believe she had power over another human being’s neurology and that she knew what was best for another.  Instead of helping her child, she began to fight against her child.  She did not think of it in this way at the time.  She thought she was fighting FOR her child and for many years this is what she told herself and others who asked.  She was fighting for her child and it was a noble fight, she would go to her grave fighting, and, by the way, in fighting she avoided a great many feelings.  She did not know this at the time, but in fact this is what happened.  And while she was busy fighting and desperately trying to keep all those messy feelings at bay, her child was hurting and feeling increasingly separate from her mother, (we cannot know this for a fact, but in retrospect the mother sensed this to be true).

More to follow…

There Once Was A Girl…

There once was a girl who was in tremendous pain.  Her pain was so great she couldn’t manage it.  She tried, believe me, she tried.  She immersed herself in books, particular those dealing with people’s neurology, but also dabbled in science fiction, mysteries, thrillers, horror, romance, this was before the age of memoirs, so she devoured studies of other people written by psychiatrists, therapists of every ilk and doctors.  Losing herself in reading was thrilling, but it didn’t help her sort through the intense feelings she had.  All those books couldn’t begin to heal her often overwhelming feelings, anxiety, sadness and fear.

She thought that moving away might help so she did that, and then she moved farther and farther still and eventually she found herself living in another country and all those intense feelings moved right along with her.  By this time she was using substances to quell the pain, on a daily basis.   She knew she could zone out and for a little while anyway she would feel nothing at all and it was a great relief.  But as soon as the substance wore off she was left, once again, with herself.  She went from seeking relief, to needing relief, to feeling that if she didn’t do those things that gave her even momentary solace she might die.

There is no other way to describe what she went through when she could not indulge in certain behaviors.  SHE WOULD DIE.  She did not know this for a fact, but she felt sure that she could not exist without the things that changed her consciousness.  She was convinced that these substances helped her cope and that without them she would not be able to, and all those feelings would overwhelm her, suffocate her.  She lived in terror of this.  Years went by and she did the best she could, but her need for calm and peace was never satiated.

As time went on she knew that if she was going to continue living in this world she would have to change, she would have to find other ways of coping, of just being.  And again her fears both mesmerized and caused her to stay stuck doing the same things again and again that now did not give her the relief they once did.  She knew in her heart she would die if she continued doing what she had been doing.  She knew it was only a matter of time now.  The thing that she once thought was keeping her from dying, was the very thing that would kill her.  Still, how to change?  What could she do?  How would she stop?

At first she sought help from doctors and therapists and the medical profession.  She tried the various things they told her to do.  She made charts and ate specific foods and took supplements and lots and lots of vitamins, but nothing she did made a difference.  She went to psychologists and talked and talked, for years she talked, and while that helped her understand some of what ailed her, all that talk didn’t help her stop hurting herself.  One therapist, someone who loved her very much and had been trying to help her for many years said to her, you must find others who do what you do, they will help you.  So she found them.  Hundreds of people just like her who did the same things she was doing.  They listened to her pain and shame and they nodded their heads and told stories of their own and they said, “Here. Grab our hand.  We will help you.  We will show you the way through because you cannot do this on your own.  This isn’t about will power, this isn’t about desire, this is about needing help.”  And so she did, though she was filled with abject terror and was not at all sure she would be able to follow them, she did.  They taught her to breathe when she was scared and they took her calls in the middle of the night and they came to her when she was too frightened to leave her apartment and they sat with her when she was too overwhelmed to move.  They taught her that she alone could not help herself, she needed others.  This was both a great relief and also her greatest fear.

Over time she learned to tolerate all those feelings she once believed would kill her.  It was incredible!  She could not believe she was able to sit with feelings!  This was a revelation and she grew stronger and more able to be in the world.  She learned to ask for help and she found some people were safe and others were not.  She learned to be in a relationship with another person and to respect them and to honor their boundaries and she experienced the joy of kindness and acting in kindness for no other reason than because it was a part of who she was – to be kind.  She experienced the joy of helping others who were in pain and came to believe there is no greater gift in this life than to offer a hand to another being who is in the depths of despair and pain.

(To be continued)

A Few Thoughts…

I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago.  A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to.  Everything about our environment was different, but there was something else too.  Something I can’t completely explain because I haven’t figured it all out yet.  Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives.  These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe.  I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.

Em and I traveled to a place that was created, organized and for Autistic people.  I took Emma because I wanted her to experience being in a place where her neurology was in the majority.  I wanted her to meet others who are more like her than not.  Em has not commented on our time away other than to say she had fun.  I, however, have a great many thoughts and feelings about being in such a place.  And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology.  But there is always a danger in making such a statement.  I have been accused of “sugar-coating” autism.  I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is.  Some people have written that by accepting I am giving up.  They equate acceptance with resignation and doing nothing.  Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.

People have written me that they want to hear about the hardship, the difficult times, the pain…  they wonder at my decision NOT to talk about that.  To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here.  There are countless blogs that do that far better than I ever could, even if I wanted to.  I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life.  And by the way, I did that well before I had an Autistic child.  I am more than capable of seeing the world as a dark and miserable place.  I don’t need a great deal of encouragement to go there.  Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery.  I have no desire to return to that mindset.

I am interested in hope.  I am interested in both being the recipient of and the giver of hope.   Hope gives me energy.  I feel invigorated by it.  When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness.  When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss.  When my daughter reads something and makes a comment about what she’s just read I am euphoric.  When she tries something new, I am cheering her on.  None of this erases the moments of pain.  None of this means everything is simple or easy or that there are never moments of sadness or difficulty.

I will and do write about my own challenges, not because of my children, but because of who I am.  Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness.  My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.

“Type three colors,” I said this morning.

“…Violet, slate blue and red,”  Emma typed.

I’m in awe.

Emma’s ever-changing “string”

Em's String

Being an Anchor

Yesterday I wrote a post, Seeing But Unable to Believe about people who see people like my daughter and assume they are incapable of a great many things.  These are the people for whom presuming competence is not only the exact opposite of what they do, but is something they have trouble wrapping their minds around.  In the comments section of yesterday’s post, someone I adore, Chou Chou, who has been commenting on this blog for almost two years now, wrote, “…if I am walking in a confusing environment, I can hold Doc’s arm and find my way, and even lead the way. He doesn’t guide. He anchors.”  She was relating this to my thoughts about supporting my daughter while she types.   Even though my daughter can type independently, she is able to converse if supported.

He anchors.”  I thought about this idea ever since Chou Chou left it here.  The idea of anchoring is one I love.  It is exactly what I hope to provide for both my children; to be an anchor.  Solid, stable, grounded, rooted…   Being an anchor, someone who provides both physical and emotional support for another human being.  I think we all need that, I know I do.  I have a number of anchors in my life and I rely on all of them.  In the context of supporting my daughter as she types, I am reminded of something Amy Sequenzia told me once when I asked her about being supported.  She told me it was more than physical support that was needed; she needed to be able to trust the person supporting her.

Trust.  When I am with someone who I do not trust it is impossible for me to relax.  If I feel I am doubted or am on the defensive I have a much harder time getting my needs met.  If the person who says they are trying to help me, keeps ignoring my requests, continues to tell me I should need something else, I become confused.  I do not, for a second believe I am alone in my response to those who say they want to help, but who seem unable to hear me when I tell them what I actually need.

If you’ve ever spent time in a hospital or have been in a situation where you were accused of something you did not do, or have been told that what you’ve stated is not believed, you will have an idea of what I am talking about.  In a world where people are living longer, more and more of us will one day have to consider living without the independence we might prefer.  Many of us will need assistance, many of us will be forced to rely on others.  Being an anchor for those who need support is something each of us can give to another, but it is also something most of us will need at some point in our life, or if you are like me, throughout your life.

One of my anchors…

*Richard

Seeing But Unable to Believe

When some people hear that my daughter is Autistic they see a beautiful blonde haired girl with no noticeable physical impairments.  They see a pre-teen who has terrific eye contact.  They see someone who is happy and playful and who laughs often and with abandon.  They see someone who loves loud music, a good party and will grab hold of a microphone if given the opportunity.  They see someone who obviously loves to perform in front of an audience.  She doesn’t fit their concept of autism so they assume the diagnosis must be wrong.  They say things like,  “But I never would have known if you hadn’t said something.”

When it becomes clear that she cannot carry on a conversation with them, but demonstrates her intelligence by typing something with lots of insights and wisdom, they see a doting mother who is supporting her daughter’s arm or holding on to the other end of a pole and they assume it is all a manipulation.  They decide it is me who is writing these things, “putting words into her mouth”.  After all my daughter cannot carry on a conversation, how could she possibly be writing such beautiful words?  Later, when I am no longer present they might say, “Poor thing, she’s deluding herself about her daughter, of course she would, how could she not?  It would be giving up all hope to do otherwise.”

In our field, assumptions about labeled people are so deeply rooted that we tend to think they are facts.  They are not – they are only shared beliefs.” ~ Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan

I explain that my daughter is typing these things, but needs support to do so, without that support, which is in the form of resistance, she will impulsively revert to her favorite scripts, and they think to themselves – that doesn’t make sense.  How is that possible?  She can type independently now, why don’t they just leave her alone and let her type what she wants?  If she can’t type these things independently, it must not be coming from her.  Her mom must be writing those things for her daughter.

I then talk about how my daughter is doing math, multiplication and division (in her head) without any formal training and they think – well, that simply isn’t  possible.  That can’t be.  They look to see if my daughter is somehow being manipulated, prompted, even though she is not being touched.  When I state that my daughter is reading faster than I can, they wonder – but how can she really know that for sure?  When Emma then obviously passes reading comprehension multiple choice tests, they think – well, but it’s just a coincidence, after all it IS multiple choice, that’s much easier than if she had to write an essay.  Those who do believe, assume she must be the exception.  They say things like, “But my child/the child I work with can’t possibly do that. You’re so lucky.  Your daughter is very, very special.”  They place my child into a little file in their mind.  A file entitled –  anomaly.

When you have enough exceptions you have to start questioning the legitimacy of the rule, the assumptions, and the paradigm.” ~ Speechless by Rosemary Crossley.

I have interviewed  a great many non-speaking Autistic people and published our conversations here and on the Huffington Post.  I have an entire page on this blog devoted to Resources, the first list is of all the blogs and writings of non-speaking Autistics that I know of, but there are a great many more that I do not know about.  Even so, people will write about how those non-speakers didn’t really write their own words or, conversely, they say –  isn’t it wonderful that these individuals are so amazing and an inspiration, but they are exceptional, they are not like my non-speaking child, or the children I teach, or the children I work with or…  Perhaps they are right, but what if they are wrong?

I would rather have my daughter surrounded by people who believe her capable than around those who do not.

Ariane Zurcher, Amy Sequenzia and Ibby Grace at the ICI Conference ~ A conference dedicated to accommodating those who do not speak

Me, Amy & Ib