Autistic Mother Pride

Filed Under (Poetry) by Estee on 22-01-2015

This might be worked on some more… I’m writing today and flipping through my binder of writing. I found this unedited poem as part of a poetic essay I was attempting last year. Please note I am not well-versed in the art of poetry, but enjoy the process of trying. I think it’s fine to share it as is. I might consider it for that horrid month of April and again for our Pride Parade in Toronto this year:

Pride has this mother
protecting
Pride!
threaded by a label
and stitched with love

Claimed
As Kanner did
on the great
scientific mother-ship;
He said they didn’t live before
as the “feeble-minded”
behind 19th century doors
of confinement
Pride!
coalescing
fragile identities
p-u-s-h-i-n-g
for new definitions
to be borne.

Adam’s Disability Poem

Filed Under (Poetry) by Estee on 15-01-2015

stock-footage-disabled-person-in-an-electric-wheelchair-approaches-stairs-high-angle-view

A Disability Poem
By: Adam Wolfond

big stairs laugh at him..
Because hard to go up when you got just a wheelchair to get around in..
I think the long road will be hard for him to travel..
He feels like people dont understand him..
I understand him like gains to be made in our lives just want to be interesting and loved totally..
I could strive and make lives better

This poem was written by my 12 year-old non-speaking autistic son. He communicates on an iPad.

“We Are A Critical Mass of Wretches” – Larry Bissonnette

Filed Under (Acceptance, Adam, Communication, Computing/iPad, Development, Inspiration, Joy, Uncategorized, Writing) by Estee on 16-07-2013

I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.

One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.

Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.

Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:

“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”

A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”

Thank you my little one. I am your devoted wretch-in-arms.

Personal Interest and Academic Reserach

Filed Under (Activism, Adam, Advocacy, Autism and Intelligence, Communication, Community, Computing/iPad, Critical Disability Studies, Living, Politics, Writing) by Estee on 28-05-2013

The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.

Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.

I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.

I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.

In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.

My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).

Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?

Goodnight Moon

Filed Under (Institutions, Love, Poetry) by Estee on 26-10-2012

Goodnight Moon
in the rocking chair,
your body cradled in the
safe bed of my arms.
Now your cherub cheeks
fall.
Soon a deepening voice
will sweep like a brushstroke
and we’ll forget

pointing tiny fingers finding little mice
tracing the arc of the cow
to our song;
a coterie

How can time move forward
in your face,
vibrate in your body
yet remain still in your room?

A page turns slowly,
please slowly.
Your head now fits
In the crook of my arm
before you sleep.

In the schoolyard
we play in chilly air.
Blustering wind tears leaves
like perforated certainty.

The helium voices chatter
on the opposite side of the park.
You silently climb the slide.

They found the same mice,
traced the same cow,
recited the same rhymes and
dreamt of red balloons.

Still now…
In a special school.
For safety?
Whose safety?
Maybe we are safe
I can’t say for certain.
I need more time.

Bulldozers nearby
tear down and
build up concrete progress.

What are we making?

Remember
the other little children behind locked doors
who never came out,
who never saw parents,
who were never cradled to goodnight,
who slept under the same moon.
Was it really so long ago?
This echoes.

Huddled are we –
rocking,
enveloped by quiet night
in our own peace.
Slowly, please slowly.
I will love you forever.
Goodnight.

Call For Autistic Pride Day Articles

Filed Under (Advocacy, Inspiration, Writing) by Estee on 01-03-2012

What does Autistic Pride Day mean to you?

The Autism Acceptance Project will promote stories from autistic people, family members and others who have an autistic person in their life. If you are interested in writing, please enter your submissions to esteeklar@rogers.com.

All submissions will be reviewed by a small panel and will be posted on The Autism Acceptance Project website for Autistic Pride Day on June 18th, 2012. TAAProject will also be promoting your stories to the media.

Deadline for submissions: May 15, 2012.
Maximum Words: 1500.

Adam and Estee on Writing

Filed Under (Adam, Communication, Estee, Writing) by Estee on 17-11-2011

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.

My Bowl

Filed Under (Inspiration, Poetry, Writing) by Estee on 14-04-2011

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.

Why I Write About Autism

Filed Under (Inspiration, Writing) by Estee on 12-04-2011

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.

Telling The Truth

Filed Under (Writing) by Estee on 31-03-2011

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.

Snow in Toronto

Filed Under (Acceptance, Adam, Inspiration, Writing) by Estee on 06-02-2011

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.

Push

Filed Under (Poetry) by Estee on 22-11-2010

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.

A Farewell; A New Beginning

Filed Under (Adam, Advocacy, Writing) by Estee on 28-10-2010

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.

Try To Make Sense of The Things That You Think

Filed Under (Humour, Writing) by Estee on 29-09-2010

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:

Oh, The Places You’ll Go!

Filed Under (Inspiration, Poetry) by Estee on 22-09-2010

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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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.