Estée KlarThe Joy of Autism

I haven’t written in a long time. Since we changed schools I decided to focus solely on Adam. I’m also very cautious of what I write about, because while it’s important for me to do this, it’s important to protect Adam’s dignity as he is maturing fast.

We made the official switch to an ABA school. Frankly, it was getting exhausting trying to find an inclusive school to support Adam’s needs. Adam needs understanding, lots of structure, lots of practice for the work that’s difficult for him, and people who greet him every day with a wide smile. I have been struggling on how to write this because I’ve been so critical of ABA. I have come to peace with this decision for now. We didn’t have good early experiences. I’ve learned that it’s not just some ABA therapists who didn’t accommodate or treat Adam with respect. Understanding autism, accommodating, accepting isn’t reserved for the non ABA teacher. Maybe times are changing.

Adam has Occupational Therapy equipment and goes to the gym every day at his school. He gets his sensory breaks. He uses a Vantage Lite and now the iPad — from the notebook, to text-to-speech for typing, which he is doing more independently. He also enjoys using the Vantage Lite. Adam also started using the Vital Links headphones which help him be able to calm his body and sit at a desk and do work. This works by choosing various MP3 music chips. He can sit and work and still hear and listen to his teachers. It’s a much better option than the Ritalin we once tried in his other school — a nightmarish experience.

After June, Adam went also to a new camp. We lost our aide worker of seven years. For the first time I had to let Adam “go.” I had to learn to trust that others would treat him well and I had to trust that Adam would rise to the occasion.

He did, although his new obsession with exploration and doors took over. He typed to me in the summer that “door is a question.” A question so powerful, in fact, that sometimes he seems to have little control over his insatiable curiousity.

We incorporated exploration time at the end of each day, with supervision. He was still adored at his new camp as he was at his older camp. Both camps are fully inclusive. He needed a bit more support after incidents at the end of his the year at his other school. I called the summer “operation calm down” as Adam was highly stressed and the door obsession began. As the summer unfolded, he calmed. By the end of it, his ability to speak reliably soared in ways we had not yet experienced. He was relaxed and happy and of course, we always try and type a little more each day at home since he got his iPad.

This was the biggest change in Adam’s communication — his verbal ability increased and between typed and verbal, I could trust that what he said, he meant. Instead of echoing or saying things he learned elsewhere, Adam began telling me real things and he still does — from how he is feeling, to what happened to him, and what he does and doesn’t like or want. Some days I will get an interesting full blown description of something I didn’t quite ask for, with language full of imagery that I have to interpret, which gives me clues into the way Adam sees things. I have asked the school to verify things I do not know, in order to test myself as Adam’s communication partner. I am always trying to ensure that I enable Adam by testing myself and watching for his cues. I am a work in progress.

Adam writes emails to me every day — something I still insist as part of reciprocal communication (and a safety necessity in my view). Yesterday, he independently wrote me that his tummy was sick. I had to call the school to verify and the senior therapist ran down to check on him. “Isn’t this a wonderful call?” I said. Sure, my son could have been barfing, but hell, he could tell me! Adam is assertive when he can speak. I can see more clearly now that he has a fighter spirit.

Yesterday, Adam was unusually upset in his OT appointment and I had to intervene. I brought in the iPad and he typed “I want dinner!” As he typed, he said the sentence before he finished typing the word dinner. When Adam is anxious, like so many autistic individuals express, it can be harder for him to access language. Sometimes it’s not, so there are no clear cut “rules” here. Yet, as soon as he was able to have access to the device to type, he immediately calmed down.

The same thing happened this morning. He was quite upset. I brought out the iPad to type on the text to speech application, which he really likes. I asked him if he was feeling tired or sick. He wrote back, “No school because I tired.” He smiled because he obviously feels more empowered when he can tell me what he really wants to say.

I get asked a lot from parents on how I taught Adam how to type. Believe me, I was criticized by people who believed that supported, or facilitated communication, was a hoax. I simply kept it up (I started when Adam was around four years old). Now Adam can type unsupported most of the time. My priority with his school is following up with is literacy and unsupported typing. At home, we play poetry games and type in the nuanced ways that are difficult to explain without writing it out in a longer essay or post. It is always best to see Adam and I doing this a few times to see how varied it can be.

Today, I promised myself I would write again, and I’m enjoying writing about Adam’s writing, which is much more interesting than mine. Sometimes I feel that I am climbing a never-ending mountain when I say it is Adam’s neurology, not behaviour, that make it difficult for him to communicate and do tasks consistently. So I stopped writing and talking for a while and just lived our lives. This is one of the reasons I had to take a break. I needed to be with Adam, go through all the changes, and just be.

So far, I like what I see as Adam happily runs to the school door every morning. We went through some difficult days with certain ABA therapists when Adam was a baby. It is now, as he’s older, that I see that consistent practice is important and helpful to him, as well as a structured day that he can predict and have some control over. For Adam, I am still convinced that the early engagement was very important through a play-based method. He always had a combination of methods that are currently out there. Being with other children was wonderful. I wish he could still be with all kinds of children, of course, especially since he typed a couple of weeks ago, “I want friends.” But when schools do not fully understand and accept autistic kids, I had to pull back and ask myself where Adam might be treated better. In this case, he’s in a place where the staff seem open minded and we work together on planning Adam’s programs and various teaching methods. Adam’s extracurricular activities include now skiing, a Friendship Club, piano lessons, and an art class.

I am hopeful because I know that Adam will progress because of maturity and because of finding the environments, support and methods that best suit him, and these may or may not change. I am also hopeful for myself that be it good or bad, writing and talking about Adam in respectful ways is still very important to how I support myself as his mother. Both Adam and Estee find writing really important, and I know Adam would tell you so.

Every parent has a dream and an expectation for their children, and expectations never quite turn out how we envision. I always had a dream that Adam and I will tour around and he will be able to tell you many things on how he grew up and learned all by himself and I can talk about the journey I took to try and help him. I can imagine Adam and writing to each other, because that’s what we are doing! Maybe soon I’ll find the energy to show you. I believe Adam the fighter will want to show you for himself.

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Today happens to be National Poem In Your Pocket Day. On my Twitter account, I’ve posted a couple — one I wrote and one which is just a quote I really like.

I just moved some things around my house today. It’s spring and the change of season beckons me outside to set up furniture and plant seeds. On the inside, I’ve got to shuffle things up. I’ve got to switch things around so I feel at home again, but also renewed in my space. I moved a bowel to my dining table. It’s been sitting on a glass shelf from the time I moved into my new house last year. It looks okay there, a light pink blush glowing on the inside. Then, as I moved some books to another corner of the room, I opened to this page quite coincidentally:

This story is about a bowl.
A bowl — waiting to be filled.
If what I have just written makes no sense to you,
I am not surprised.
If I had known in the beginning what I was looking for,
I would not have written this story.
I had to trust there was a reason I had to write,
and I didn’t have to have it all figured out in order to begin.
I would find what I was looking for
along the way.
— Sue Bender, Everyday Sacred: A Woman’s Journey Home

It’s a nice way to sum up why I think I write here, on scraps of paper, in my daily journals. I do have faith in reasons; in my blushing bowl on the dining room table.

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Meet Amy Hempel, a New York writer. She tells us why she writes.

Sometimes people are really critical of writers, particularly those of us who share our days and our lives with our autistic children. As if a writer doesn’t already have the little voice in the head — the just who do you think you are? one always squeaking in our heads. Sometimes there are real people who tell us the same thing in the “autism community.”

I hesitate to call it a community because people continue to be so divided despite our sameness; despite the fact we all get up in the morning with the same wonder if our children will do something exceptional. Will they utter a sentence? Will they have a good day or a bad one? You know the list as we wake, sometimes waiting with bated breath, other times allowing ourselves to relax in the moment and actually enjoy special moments with our kids. I am continually astonished how similar we all are, despite political interests.

Like Amy, I am also curious in the every day and what enables us to get through our challenges. What is it in each one of us that keeps us going? This, to me, is the gourmet meal of life. In my life with Adam, mustard always comes on the side.

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Toronto weather is undecided. Yesterday the city was teased by sunshine and the smell of defrosting earth. When I awoke this morning, a film of white covered by backyard. It was like that ( I was away) last week. March 22nd was delightful, I was told. A real spring. The tulips were sprouting. The following day my girlfriend sent me a picture on my phone –Toronto was having another snowstorm. Schizoid weather makes it difficult to plan whether or not I should uncover the backyard furniture and start putting out the planting pots, but that’s the kind of city I live in.

My house is crying throughout it all. There is a big leak in the brick wall out front. The walls are buckling and water drips out of the brick like tears. I have a patio that is over my garage. It’s too narrow to be a real patio — it’s more like an awning — and the drainage is bad. My gut wrenches wondering if I have to tear down a whole wall and put an iron fence up instead. I ache over the possible expense. I’m hoping that I, and my wall, can survive the thaw with a cheaper remedy.

Like the weather, I’m undecided about my writing. One day I want to just write about experience and let it rip. I’m currently in love with memoir. I want to write about disability memoir as I’m writing my own. My mother approached me yesterday about my Italian dream blog post: “I’m a little worried about your blog writing,” she said, carefully searching my face. “What if someone gets mad at you?” Our previous laughter stopped cold.

“Mom,” I said as I put my glass of water gently down on my cracked counter-top. “People have already been mad at me. I just can’t stop writing. If I do, I won’t be able to breathe.” I realized what I said was true — not just some dramatic statement for the sake of winning a point. If I have talent or not, it’s beside the point. I need to write, and I get enough emails from readers to at least support me and keep going. I’m not ashamed to say that I gobble this feedback like a starving person — so grateful for it…thank you. Writing is lonely.

Her comment, though, made me briefly think of not writing at all. My stomach tightened and I grew anxious. I’ve been writing since grade five, when my five-foot feminist teacher believed it was in me to write. When I was a teenager, I spent nights sitting on my bed with the dim bed-side table-lamp writing reams of pages to a girlfriend who lived abroad — mostly about boys. When I’m alone, still, I’m always writing in notebooks, mainly on my bed before Adam wakes. I write in them every morning. Is this what makes me a writer? It’s such an odd self-ascribed title. Yes, I’ve been published a few times, but every piece of writing is like starting a new venture.

Writing about myself and my life is like digging in my garden and showing you the dirt as well as the flowers. It can be unnerving as I try so hard not to cringe at that dirty feeling on my hands. Sometimes I have doubts. They are probably good doubts when figuring out how to represent others fairly as well as myself. All characters, in fiction and non fiction, are complicated.

Wason Choy, a Canadian writer once said in a class I attended, that everyone who comes into contact with a writer should know that they are somehow going to be a part of our story. He didn’t say it quite like that, but Wason has written a lot about his Chinese-Canadian family. In the New York Writer’s Workshop’s The Portable MFA in Creative Writing, it says the following about memoir in “Why You Should Write About Your Unhappy Family”:

One of the most common excuses for people not writing the book they want to write — usually involving their family — is that it would hurt someone. Writing a book always hurts someone — preeminently the writer, who grows poorer and more alienated. And banging the head on the desk and devouring the contents of the refrigerator don’t do a lot for self-esteem. Writing is hard work, and we always want to avoid it unless it’s absolutely necessary. Obviously though, you need to apply common sense and a sense of empathy.

There are many choices a writer must decide along the way. I guess today I’m banging my head on my desk and isolate myself, yet again, in a 10×10 room with this computer. It’s raining outside now and my wall is bawling. The work continues.

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Last week, The Weather Network announced that we were about to get a huge storm. The city prepared, remembering several years ago, when the army was called in. Last week, everyone prepared. Schools were shut down. I received an email from Adam’s school that there would be no school the following day, anticipating the oncoming emergency.This was going to be serious.

The next day, Adam and I went for a walk. The streets were quiet and I scoffed at what Torontonians think of as a weather emergency. “Weathertainment,” I’ve heard it called. To get an idea, check this out:

It snowed last night too. Today, Adam and I plan on taking the hills, facing the “danger” head on. Yes, we are going tobogganning. Remember those days? When we’d go out and play all day in the freezing cold and our parents didnt’ give a crap if we got frostbite or not; when we went to friend’s houses who were sick anyway? Ah…those were the days.

—-

Adam goes to Holland Bloorview for art classes. There, he gets to be surrounded in what I call a little piece of heaven, that place. The art studio is one of the most magnificent ones I’ve ever visited. The art projects are innovative.

I sit around the lobby while he takes his class, and I get to watch other people, talk to others. In wheelchairs, braces… people of all kinds, I feel more relaxed and human than any place else on earth. I study my books, think about my writing. I’m taking a memoir class with the wonderful person/writer, Beth Kaplan. Yet, I keep trying to focus on the scene…the scene….zoom in the on the SCENE, I think. I’m trying to tell too much story to soon…I rush. Story of my life. My mom said since I was a little girl, I always wanted to know what was going to happen to me. The wisdom of slowing down is just beginning to absorb. But then again, we can’t change our essential nature. Maybe all we can do is train it a bit.

Then, for one of those moments that sink me, I think I can’t do it. Just who do I think I am? A writer? Yes, she assures in one class. It’s part of a writer’s list of fears.

It’s time to pick up Adam. I gather all my clothes…all of them…the UGG boots I took off because they make my feet too hot, and my heavy shearling coat (for the Toronto weather), and big bag of books I’ve brought along. I’m weighed down as I shuffle towards the glass studio.Adam is wearing an old shirt as a smock and it’s covered in paint. He’s in the corner near the bright twenty-foot window, a malleate in his hand, pounding a large piece of clay. He then takes a little piece and puts it where he wants it to be, and then pounds again. I stand back and watch, and then approach when I think he has taken a break. He sees me and walks towards, smiling. I lead him back to the lump of clay. “What is it?” I ask.

“It’s art,” he says without hesitation.

It is. I wish I could silence my inner critic.

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A little something I’m working on:

Push

By: Estée Klar

I pushed you into the world.
I wanted you.
I’m sorry.

The white hospital room and metal equipment
fluorescent lights and beeps
no air
until your lungs were suctioned
over one minute.

I waited
anxiously,
afraid I would never meet you.
But you cried
as nature intended,
as medicine assisted.
I’m sorry.
I’m glad.

You are eight now.
Goodbye my toddler -
the one I weep over.
Time barged in.
My toddler
proclaimed autistic
at 18 months.
The number of life.
Chai.

When the life as you now know it began
behind closed doors with strangers -
enthused young therapists -
to heal the world
in tight jeans
and you, their mission.

Your life started for me when you kicked.
I watched your foot underneath my skin,
when you held your head up for the first time,
from the crook of my arm,
as you sucked the nutrients you needed
from my full body
releasing love.

Your eight-year-old head
still soft
I put my face in your hair,
and hold you for fun,
in the crook of my arm
(sometimes you smile).
But I think
that you can’t remember.
Your writhing body pushes
to climb
the growth chart,
we marked last year -
and away.

Since I pushed
the way I always do
through life
to life
to you,
I say daily goodbyes.
Ah, your little hand in mine.

“Bye-bye, yes,” you say anxiously.
Difficult words for you to speak
You try so hard.

When the people came –
as they do in our autistic life –
the ones who needed to close the doors
like heavy iron gates
I heard you wailing.
My bosoms leaked
my arms yearned
my heart
ached.
I should have done something to protect you.
I tried so hard.

Preschool.
Leaving you in the schoolyard
you circled perimeters
maybe watching,
for comfort,
I waited.
“It’s time for you to say goodbye,”
the teacher said.
I wasn’t sure
if you were happy,
if I should have yanked you home.

You tried so hard –
with loud children
a crowded room
you found quiet corners
books
and alphabet letters
that you wiggled in front of your eyes
a dance from A to Z –
your solace.

You are my boy —
the one who read book spines
from the shelf you laid beside
before you could walk.

You were pulled away,
told to sit down,
taught to use picture symbols,
to kiss the baby doll.
That would satisfy them –
plastic affection,
obedience
and oh,
to communicate.

Kindergarten –
a quieter place
little shoes lined up in the hall.
You learned your routine,
to cleanup,
put in your chair,
sit with kids.
Those kids –
fast talking, moving, sharing tea cups, Lego, dolls
like the blur of the ceiling fan.
They didn’t come over.
I ached for you,
for me
they didn’t see.
The fan above
kept you company
and you waved hello.

You made things
you showed me your love of animals and dinosaurs
you made drawings with details
that your peers couldn’t draw.
Their voices were louder,
their hands stronger,
thicker lines on paper –
typical lines.
So people praised them
while you circled the room
trying not to be seen.

You see things
you know things
you can’t say things
very often.
Wordless
yet full of hums, clicks and whoops,
you uttered many
like jazz
I seemed to understand.

Your words come sometimes
you push out,
the assumptions
about a humming boy.
I have to pay attention
or the soft words uttered,
cannot be retrieved
from vanishing speech bubbles
above superheroes
poof.

The sounds you made when dad and I split –
your body spasming relentlessly –
I feared.
Probes placed on your body, your head,
that precious cranium
from inside my flesh to the crook of my arm
they prepped and monitored
for seizures.

Your body
protesting change
in the brittle cold of February
thrashing and falling
with pain,
confusion -
I’m so sorry.

We calmed into
the sun of summer
warming us into fall.
We grew
from under
dead leaves
to fertile soil.
Ripe green shoots
of Hostas unfolded.

You have started a new school.
You leave every morning,
your soft lips kissing mine
my face brushing cherub cheeks
thinning
your body stretching
in a monogrammed sweater.
The toddler a shadow of you,
the boy taking over.

I see a future in your face,
a history already written.
I say goodbye –
the smooth soft skin
sweeping across mine.
The door angled
you exit
gentle air wafts
as I close.

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I am remembering the days when Adam watched endless reruns of The Sound of Music. I actually think he had a crush on Maria, with her sweet voice and blonde hair. From the time he was a year old, some of you might remember this story from Between Interruptions: 30 Women Tell The Truth About Mothehood, Adam watched Maria and the Von Trapp family intensely during his first birthday party. He still relaxes everytime I sing songs from that movie, usually as he tries to get to sleep.

I’ve written a lot about Adam over the years, carefully finding the right vignettes to maintain some semblance of privacy and dignity. Sometimes I simply gush. While there are some struggles, as a one-time-mom, I cannot help but relish in everything Adam does. He is, and I’ve heard this someplace else, my heart literally walking about the earth. Although autism is important — we’ve had many valuable discussions through our blogs — it also doesn’t matter in the way I love my child. Adam is Adam, and he has brought me great joy.

Forgive me for the slow-coming blog posts these days. I have been thinking a lot about Adam and this explosion of language, his talking, communication — his expression of feeling and will.

I’ve also written occasionally on how to write about our children and of course I am thinking a lot about this now. I acknowledge that Adam is not a willing participant in this, although I’ve tried to get his “permission” to write about certain things. It seemed tenuous in that his communication was difficult to come by. I would ask Adam to type a yes or no to certain things I wanted to make public. It was sometimes difficult to tell if his yes was intentional as he would either quickly point, type or even say a “yes,” in an effort to fulfill my need for an answer. This has changed in the last while. Adam’s intention is much clearer now.

In my last post, I wrote about watching Adam express his will in “early intensive” therapy. Although I was emotionally attuned to him, I see his intention even more now watching videos in retrospect. Therapists talked too loud. They didn’t sit and listen. They didn’t join in with him, early on, in his version of games and communication. Amidst a mish-mash of discrete trials and play therapy, I heard a faint “don’t” in the video when a therapist tickled him. I am certain, as much as I like to think I am listening to Adam, that I spoke too much and didn’t give him a chance. I’m certain there are moments I also didn’t hear him. Children are often not listened to. Non-verbal autistic children are, for the most part, ignored.

Still, while I must lay down some rules for his safety, Adam also needs a safe place where he can express himself, to me. For Adam who may read this when he gets older, I hope he will understand (and perhaps forgive…or maybe he will cherish me for this, I cannot predict) his mother’s need to express herself. I began blogging in 2005 (fomerly joyofautism.blogspot.com) during a time period that was highly volatile and polemic in autism, and in an atmosphere where everyone wanted to change Adam, simply because he is autistic. I’m not saying this atmosphere has changed. I have, however, changed. As Adam’s mother, I value the learning of discipline, rules, and being educated equally as much as finding one’s own way, creativity and uniqueness. We all must learn it and so, Adam was born perfect.

Although I still wish to feel his feather-like hair brush against my face, and although I still want to hold him like my baby, he is no longer. He is expressing his sincere need for independence and his need to be heard. I search his face for that baby I birthed and I see an older boy take his place.

I want to say farewell, not to blogging or writing about autism necessarily, but perhaps to a type of blogging where I made certain assumptions, and a type of writing that talks about one’s child as a cherished baby. Adam and I, in addition to all the changes we have experienced that have formed us today, have entered an entirely new phase. I’m watching how both my outlook and writing will too.

So, I will continue to choose my words carefully. Here, I mark a new era.

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I am in writing mode which is why my blog posts are coming slowly these days. Stay tuned for one, although as in the title of this ditty, I’m trying to make sense of the things I think. That, admittedly, can take some time.

I came across this with Nick Hornby. As many of you are mother-writers/bloggers out there, I thought you’d also find the “blaming it on the kids” excuse for not writing/sacraficing his “one shot at immortality,” amusing.

OOOOOO…aaaaaaaah. I like this:

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I’ve been told that Adam adapts well — it’s not something we hear when it comes to autistic kids.  It’s only been a couple of weeks now and he seems happier and settled in his school. As for myself as Adam’s mother, it settles me. For the first time ever, Adam has a desk that flips open, and I’ve already had a chance to see the stacks of binders in his desk. I can’t imagine his little body, for he is the smallest kid in his class, carrying those big things. He has a cumbersome communication device (Vanguard), because he cannot talk fluently. There are always many things for him to take wherever he goes now. It is not a light load.

As Adam becomes more independent, my views of him, of our lives and parenthood are shifting. This is not a journey I will ever attempt to predict. So much has changed in our lives, and now that Adam has switched schools, these feelings are  punctuated. I feel that we have reached the second phase or our autism journey, if we can parse life into phases.

These past couple of weeks we have been reading an array of Dr. Seuss’ stories. Every night, I ask Adam to choose which one he wants me to read to him. This evening, he chose Oh, The Places You’ll Go! It is the wisest poem I’ve read in a long time. I thought I’d copy some of the lines because I became rather pensive with all of these changes going on – with Adam’s growth,  maturity and the road ahead. While I was reading this story, the lines of the film The Curious Case of Benjamin Button also popped into my head.

What an important a lesson it is for Adam, as it is for us as parents who sometimes get caught up in the idea that our children won’t end up doing or being anything, to think again; how critical it is to see all the autistic adults contributing to society in their own unique way, while also re-evaluating what “success” really means to us. It reminds me, also, of how important it is to have mountains to climb.

 Enjoy this abridged version as food for thought:

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You’re on your own. And you know what you know.
And YOU are the guy who’ll decide where to go…

…You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers
who soar to high heights.

You won’t lag behind, because you’ll have the speed
You’ll pass the whole gang and you’ll soon take the lead.
Wherever you fly, you’ll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don’t.
Because, sometimes you won’t.

I’m sorry to say so
but, sadly, it’s true
that Bang-ups
and Hang-ups
can happen to you.

You can get all hung up in a prickle-ly perch.
And your gang will fly on.
You’ll be left in the Lurch.

You’ll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you’ll be in a Slump.

And when you’re in a Slump,
you’re not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare stay out? Do you dare go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

…Oh, the places you’ll go! There is fun to be done!
There are points to be scored. There are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You’ll be famous as famous can be,
with the whole wide world watching you win on TV.

Except when they don’t.
Because, sometimes, they won’t

I’m afraid that some times
you’ll play lonely games too.
Games you can’t win
’cause you’ll play against you.

All Alone!
Whether you like it or not,
Alone will be something
you’ll be quite a lot.

And then when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on…

…On and on you will hike.
And I know you’ll hike far
and face up to your problems
whatever they are…

And will you succeed?
Yes! You will, indeed.
(98 and 3/4 percent guaranteed)…

…So…
be your name Buxbaum, or Bixby or Bray
or Mordecai Ali Van Allen O’Shea
You’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

This is the video clip where Benjamin’s daughter is reading a letter written to her, from him. You can choose to make the best or worst [of what is handed to you in life]. “I hope you make the best of it.”

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It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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“Forever can be undone in a second,” says Stacy Morrison, author of Falling Apart in One Piece: One Optimist’s Journey Through The Hell of Divorce (Simon And Schuster).

Stacy is a successful editor of Redbook Magazine. She begins at “the end,” she says — when her husband declares without counseling or any other clue, that “he’s done.” He leaves Stacy to piece together all the possible reasons for his leaving (over 300 of them apparently, which she has numbered), as well as the pieces of her life and very being. She is left to raise her three-year-old son Zack and learns to become a single parent, throughout trying to figure out where she belongs.

Chris, her ex, hangs around a bit, although he clearly doesn’t take a role in parenting in the beginning. With all of her obligations, her job, her type A personality, Stacy stumbles, crashes, falls, and then swims into new existence for as long as two-years post divorce. She finds she does not fit into old social networks, is struggling to keep all the balls in the air, while dealing with an “evil” house that gushes water in the basement which she must repair before selling it post-separation. The theme of gushing water runs throughout her memoir as she finds a new home for herself and for Zack. The sound of water (and she even experiences the gush in her new apartment from a leaky toilet) haunts her in her dreams even as she has moved into her new place and it serves as a metaphor for her feeling of drowning post-divorce. “I was still afraid of my not-quite-ex-husband and the way he seemed to hate me. And I still had to start over on starting over, because here I was almost two years later still stuck, still falling apart, still floundering, still drowning, goddammit. Still under water.” (p.205)

What was startling to me was to read how such a confident, capable woman, similar to most women I know, was so scared and disabled by having been left. It was striking because no matter how competent we believe we are, the dissolution of a relationship, especially one with a child, can be so debilitating and take years of recovery. It is endemic of our society that we think we can plan everything. It is this belief that we can actually be in control that leaves us standing dumbstruck at the aftermath, wondering why it all didn’t work out.

Chris, her ex, seems supportive of this book, wherein she regards his unfulfilled dreams having been one of the reasons for their divorce. “He hated me for being capable. For dealing. For buckling down and handling the stress of life. For being someone who attracted stress into our life. For being someone who liked challenges. For being the person who would step in when he had to step out.” (p. 63) For letting Stacy write this, I give Chris so much credit and it attests to his strength. It must be difficult to read about your short-comings from your ex, your unfulfilled business dreams (which I hope have since been fulfilled). Yet, on balance, Stacy lists a multitude of her own shortcomings and she has to work through the perceptions of Chris about her as well as of herself.

“At night I could feel other reasons sneaking into my head. I caught glimpses of where Chris and I didn’t see eye-to-eye, the parts to me that I didn’t necessarily even like myself, the instances in our marriage in which I had been selfish or mean or ungenerous, the moments when I had doubted our relationship. Maybe I was a bad person. Maybe I wasn’t who I thought I was. Maybe I was unlovable.” (p. 40) “Every single piece of who I thought I was was being called into question as I sifted through our shared history, looking for my answers.” Stacy talks about how he called her an “unhappy person” and “crazy,” which seems to be, as she notes later on, Chris’ issue. Yet it effects her to her very core as she tries to heal from the breakup.

In one exchange, she gathers her wits and says to Chris, “‘I am sorry that is how you see me and how you experience me. And I know that you do. But I know in my heart that I am a generous and loving person.’ It was the turning point, the moment I realized that I didn’t have to meet anger with anger, that I didn’t have to marinate all the terrible things he wanted me to feel….I could also see that Chris was lashing ot at me partly because leaving me hadn’t cleared him of his responsibilities to me and Zack, but I knew that whatever anger he was feeling about that was for Chris to deal with on his own. In that moment of vulnerability, of being open to his anger, I sensed a strength in myself that I knew I could trust.” (p. 121)

Stacy shares so much of herself and of her struggle to stay afloat emotionally for herself and her son and she learns to grow into a new relationship with Chris while letting go of the dynamic they once shared. She lets go of all the “complicated reasons a marriage starts to fray,” and reflects on her friends and colleagues need for a reason — did someone have an affair? Who was at fault? Although she was the one who “was left,” she doesn’t have a high opinion of how onlookers need to find reason or blame, and postulates that perhaps finding those easy reasons (at least easy in terms of logic) shields them from the many cracks in their own relationships. All one has to do is to look at Elizabeth Edwards and not feel terrible after what she has been through. The fact that a woman has to be blamed for “emasculating” her man if he has an affair or two is just but one example of how society wants to find a simple reason for a failed marriage. Certainly we all want to believe that we are untouchable by the possibility of breakups. We all want to believe that what happened to our friend, that politician or celebrity would never happen to us.

Stacy’s moral is that no life can be planned, and as a arch-planner, this was one of her lessons. She says, “Life is good. Life is hard. These two truths are unrelated…Everyone has pain in their life. It counts all the same.” (p. 230) The truth is, it can happen to anyone. There don’t seem to be any rules we can abide that can truly determine a successful relationship. There are too many factors in life, too many circumstances, too many turns to be able to determine a cause for either success of failure. Perhaps too, there is no such thing. Perhaps we are simply fortunate to have had a relationship at all — no matter what the duration.

While she becomes successful at learning to leave Chris’ opinions of her behind and leaves him to sort out his own issues, I once again applaud Chris for allowing Stacy to write this memoir so honestly. There is not a hint of self-pity in this book and for every one of her perspectives, I believe she is fair and she cites many of her own “faults.” It is simply an honest tale of how two people have grown apart and their need to find their own paths. In writing it five years post-divorce, she also calls her own situation “fortunate” in that she and Chris are still raising Zack together. “I think about how Chris is a much better partner now than he could ever have been if we had stayed married,” she says.

When reading her memoir, I think back to how excited I was to marry Adam’s father and how we spent our thirteen years together as a couple and all the joyous and challenging days. I think about how proud I am of having had that relationship and having Adam come from it. I had always called Adam our “love child,” as he was conceived right after our marriage. I remember the courting, the planning and how excited we were from all of that and how the whole family got involved and how important it was for me.

It saddens me, however, that we still, in a liberal day and age when we are learning to get along in many different familial configurations, that divorce can still become so acrimonious, and how it can end so abruptly. It is devastating for so many people — family and friends combined. While anger is natural, it is just but one stage in the process of divorce. It was this paragraph by Stacy that I liked that I feel could help people heal better, in order to honour a partnership so significant:

“I believe there has to be a better, more connected, more compassionate way to help people around us honor the end of one of life’s most beautiful leaps of faith.”

And that is what marriage is. It is a beautiful leap of faith against all odds, and like Stacy, I’m still glad I did it. By being glad, by honouring the time we spend with someone, we permit ourselves to move forward with evermore hope and joy in our lives. It seems that both Chris, Stacy and Zack have been able to do just that.

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When I think of my youth I feel sorry not for myself

but for my body. It was so direct

and simple, so rational in its desires

wanting to be touched the way an otter

loves water, the way a giraffe

wants to amble the edge of the forest, nuzzling

the tender leaves at the tops of the trees. It seems

unfair, somehow, that my body had to suffer

because I, by which I mean my mind, was saddled

with certain unfortunate high-minded romantic notions

that made me tyrannize and patronize it

like a cruel medieval barn, or an ambitious

English-professor husband ashamed of his wife –

her love of sad movies, her budget casseroles

and regional vowels. Perhaps

my body would have liked to make some of our dates,

to come home at four in the morning and answer my scowl

with “None of your business!” Perhaps

it would have like more presents: silks, mascaras.

If we had had a more democratic arrangement

we might even have come, despite our different backgrounds,

to a grudging respect for each other, like Tony Curtis

and Sidney Poitier fleeing handcuffed together,

instead of the current curious shift of power

in which I find I am being reluctantly

dragged along by my body as though by some

swift and powerful dog. How eagerly

it plunges ahead, not stopping for anything,

as though it knows exactly where we are going.

—–
– poem by Katha Pollit (winner of the National Book Critics Circle Award)

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In part, this blog was to discuss the process of writing a book and of writing itself. Many people like to think that the end result is easy. Most writers know this is not so. While I’m not a new writer, I’ve not yet written a book.

Much like how we view people and autism — that there is a goal that must be reached — that only one end result is desirable or feasible — we forget the journey and the process as the greatest creation of all. When all is said and done and the product is finished perhaps a few people will read our work, perhaps fewer will remember it (or as Elizabeth Gilbert and J.K. Rowling will attest — sometimes there is “freakish” success). But that does not make the doing, the making, any less significant. An act of creation is no waste of time. It pains me sometimes when I watch a culture so invested in the end result that we continue to churn out less creators and more factory-line producers in business administrators and lawyers (but let us not forget that there are wonderful creators in these professions as well). I have a real issue with “professionals” being churned out of universities, as I find that those without such degrees can be equally, if not more competent, in business. I believe university is an opportunity to receive the Universal Education – not a place to learn a trade. It’s not that I do not appreciate trades and craftsmanship, for I have great respect for it and also believe we undervalue true craftsmanship. I believe learning a craft is equally as important as learning philosophy, literature, art, and the sciences. My real point is, life is more than the products we produce. It is the intricacies, decisions, confusions and the work in between that is often more meaningful and interesting to us in the end. The “wax on, wax off” of the Karate Kid was more important than the rush to learn Karate.  If the process of our lives wasn’t important, we wouldn’t be writing and producing biographies of people and their private lives — we just wouldn’t be that interested in them. We always need and want to know the story behind the creator.

I like to think of writing a book or a blog as a process as important as writing the Book of Life. As I went to a funeral last week, the Rabbi concluded that the “book of [the person's] life had now ended.” Our lives are complex narratives. We are reluctant to put the book down. When reading, we have been so invested in the journey. If this is not testament to how important a process is, I don’t know what is.

It was listening to a number of authors last week talking about process that I realized we are not a culture that appreciates it very much while it’s underway. We have our eyes on the prize.  One author even stated that there is no such thing as a failure in writing. We must have many of them. In this sense, there is no such thing as a failure.

I’m still writing and doing a lot of research now that the bones of what I want to write seems to be constructed.  The research is so much a part of my journey that I can see how some writers may not want to stop. Yet certain chapters have to be written. Some have to end. There is always something new to write about. There will be an ending to mine soon. But until someone reads the last sentence in my own Book of Life, I’m going to try and continue to relish the process.

I hope it need not be mentioned that this post is a metaphor for all of life, and for our autistic children with whom we place so much stake on performance and end results. It seems a bit of a let-down to have to spell it out.

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I’m taking a break and writing at my desk while Adam plays. We’ve had a difficult weekend with anxiety so I’m taking a moment to permit myself to daydream a bit. Writing the book is a challenge with Adam’s needs. I haven’t showered since Thursday.

I have to admit I’m dreaming of a little white cottage on the beach by the sea. For some reason, I think I’ll just be pumping out the writing there. Isn’t that how we all dream it will “happen,” without the reality that it just takes daily effort and practice? But ah, the dream…. For now I settle for handwriting when traveling. I wrote a novella during my last trip Paris in the coffee shops where no real Parisian would dare to be seen writing. It’s what labels me a true foreigner there, apparently, alongside how I order my coffee and what kind of coffee I order at any particular point in the day. Yet I didn’t care. I loved every minute of it.

I’m interested for all you bloggers out there, when it’s the best time and place for you to write. I’ve got my little white office and I stare out at the street through two thinning pine trees.

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“You didn’t see me.” That must be the most popular line of relationship distress we’ve all ever heard and the reason for much heartache. With those who are closest to us, we yearn to be seen meaning, we want to be seen for who we really are — all that vulnerable, squishy stuff inside of us that we want others to take in their arms and hold gently.

What does it mean to “be seen?” I mean, out here in Miami there is no lack of men and woman stripping nude, or nearly nude, wanting to be seen. Hair coiffed just so, a pair of trendy sun glasses and a spray-on tan, and off they go into the public to show off with their heads held just so –  pretending as if they are not aware that others are staring. These people may want to be seen all right, but they want us to pay attention to what they want us to see. It is a far cry from being seen.

If you think this post is about relationships it certainly could be. This is the meaty stuff of what makes or breaks many of them and why life is so hard sometimes. In his book Double Take: A Memoir, Kevin Michael Connolly travels to more than seventeen countries and captured 33,000 photographs along the way about the way people see him. Born without legs, “being seen” takes on a whole new meaning.

The photos in his book titled The Rolling Exhibition (named after his rolling around on a skateboard: “This Is A Legless Guy’s Skateboard. Please Please, Don’t Steal” he writes upon it), have been featured at museums and galleries around the world. They are taken from his perspective, low to the ground, (he is lying on his back when he takes some of them) with people staring down at him, which of course has a pent-up meaning in itself when talking about disability and the way people stare. They are passer’s by, whisking past him and he has caught their fleeting yet loaded glances. How could one describe them? Curiousity? Fear? What does it mean to be a subject of a stare when you have not intentionally invited it, unlike those plastic Miami boobs?

(Interesting to go off on a tangent here to recognize that those fake boobies are in the same sense a prosthesis that we admire rather than fear. Of course, we have the same curiousity and sometimes repugnance at the fake boobie because we understand that some person has intentionally gone under the knife and altered herself to make her more attractive for sex and they don’t look quite real. So we stare to make up our minds, or stare because we are just so darn curious. Aimiee Mullins, who has designed for herself a series of gorgeous looking prosthetic legs that can make her various heights has also noted the lack of difference between her legs and the many prosthetics men and women now use by choice in order to alter their appearance).

Like the performance artist Petra Kuppers, who with her disability stages performances that also investigate the stare, in fact invite it, Connolly has invited it by his being born with bilateral amelia (meaning born without limbs). It’s an unintended invitation, like being born into royalty with paparazzi following your every move. You don’t ask for it; it’s just sort of a birthright and a burden, whichever way you look at it — they seem to go hand-in-hand.

What I love about the camera is that it’s like staring back.  Being a photographer means you are like a voyeur, capturing other’s most private moments. One simple glance or expression, as they saying goes, captures a thousand words. Connolly has taken the stranger’s stare and turned it back on them. It’s rather empowering to turn the investigated into the investigator.  If I were Petra Kuppers, I’d be performing. If I were Estee Klar, I’d be writing. It’s what people who need to express a point, do. The camera captures private moments the way people stare at many disabled people who cannot fend off the stare. Often, we are intrepid lenses unwelcome in private moments. Yet Connolly, like all people who put their expressions out into the world has a conscience as he reflects in Sarajevo:

“What’s wrong,” [Beth] asked softly, her hand on my back.
“I don’t think I can shoot this anymore.”
“Why not?”
“I think I’m hurting people.”
“How?”
“People think I’m a beggar of someone who was hurt here.”
“Well, yeah. Maybe some people. But that doesn’t make you any more of a beggar than you were a month ago. You and I know who you are, so don’t let it get to you.”
“Yeah, but I’m using them for the photos.”
“So? It’s not as if their entire day is ruined or anything. You’re getting too wrapped up in everything. If you stop shooting and just quit, you’re going to hate yourself forever.” (p. 198)

It’s a question of art to a certain extent — this idea of truth-telling and who and what moments we use as subjects. When we take our personal experiences and use others to reflect a truth, are we doing unto others as they do unto us? The discussion about staring at people who look different or disabled is a sensitive one, and the more others can see themselves, the more we all can understand the effects of what we do everyday — those things we think are harmless like taking about an autistic person like they are not present, or criticizing the family, the parent, or autistic individual who needs to fight for things that come automatically to other families like access to education, services, and just acceptance into our communities without having to talk about autism, acceptance and the like. From a personal point of view, although I have to end up talking about it, I don’t want to talk about it everyday. We want (and deserve) to live our lives with autism as does any other person who wants to live their lives in peace, without having to justify the reason why they deserve to be here — why they “have” autism, where it “comes” from, or why they should have access to that school or that aide.

As a writer who likes to write about certain instances in our day-to-day lives — from the person who stares at Adam’s wildly flapping hands, to the friend whose account I once used about, when I was new to autism writing and the idea of “normal,” her desire to change the appearance of her child’s ears (I used the story about our quest to make our children appear indistinguishable and in Adam’s case, it’s simply impossible) — it’s really difficult to write about these real-life events. Yet there is a need for many of us to write, or make photographs and art, about them. It seems that everyone is sensitive, but the context in which these accounts are written are important. The consciousness of  not wanting to hurt other people, seems to me, is a must in the making of art, not that the hurt won’t be there. In the world of black-and-white autism politiking,  there is a need for education through thoughtful literature, memoir, art projects like Connolly’s. These projects help us understand life from a different perspective, and because it has been “done to him,” Connolly has a need to state his sensitivity. The outcome of his work is worth it. Like art and writing, the poignant point is made when it is evident that the artist has weighed the cost and the benefit of telling true stories.

In his Epilogue, Connolly reflects how the looks, no matter how experienced or hardened we become, still effect him:

“As these pages show, my lack of legs has generated a lot of strange looks. Those stares still get to me sometimes. Sometimes I wonder if I should explain myself to the people who shoot a sad direction in my direction. Maybe, if it would relieve that moment of guilt or pity from their lives, it would be worth it. But most of the time, I let those stares slide off my back. A lot of times, I don’t want to talk about my lacking legs.

Maybe it’s because dialogue has a tough time blooming when it’s about negative space. There’s only so much you can discuss about something that isn’t there, and isn’t forthcoming. And rather than try to make a bad riff on a Beckett play, I’d prefer to end this page with what I do have…

So maybe the reason I’ve been so frustrated at times by the question What the hell happened to you? [what caused your son's autism? -- my interjection here] is because it’s simply the wrong one to pose. It focuses too much on a physical circumstance based on a singular point in time, rather than on all of the influences and characters that followed.

Perhaps Where the hell did you come from? is what we all should be asking.” (pp.226-27)

I would agree. It would be nice to be asked that question rather than “what happened” to us, even though autism is certainly a part of our lives. The question is, Do you see me? For Adam and I, and Kevin Michael Connolly, it seems, it means the whole package.

—-

Kevin Michael Connolly, Double Take: A Memoir, New York: Harper Collins, 2009.

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