Jack Layton

Filed Under (Inspiration) by Estee on 22-08-2011

Impromptu memorial today at Toronto’s City Hall:

Click Here to read his Letter.

One of his favourite songs:

Focus On The Positive

Filed Under (Acceptance, autism, Inspiration, Joy) by Estee on 18-04-2011

Huh. I just wrote that title quickly and then Monty Python’s Always Look on the Bright Side of Life plays in my head and makes me laugh. It’s so cheesy, it’s perfect. Focusing on the positive means you have to feel things, even uncomfortable things. We can screw up, then click our heals and sing a silly tune. So what? So you feel bad one day about something, be it yourself, your “fate,” your kid’s autism. If we didn’t feel we wouldn’t be able to enjoy the richness of life. I have my down days and my up ones and keep learning that staying with the positive is a continued discipline that has to be practiced day in and day out. If I worry about Adam one day, I always know that the next day I’ll think differently because I’ve made that choice. I believe in that kind of life view and that it takes some effort to, well, think positive. That’s it. It sounds easy. No grass is greener than the kind we grow in our heads.

On to my point. Today I’ll share some nice comments in the May 2011 issue of Today’s Parent by readers who read The Joy of Autism article in April. It was the fertilizer I needed to click my barefooted heals, as if the sun was shining on a warm spring day, in thick long grass.

Count Your Blessings

Re: “The Joy of Autism” (March). I always like to commend magazines that include articles on autism. I feel that the more awareness there is, the easier it is for parents to begin to accept and involve their child with autism in the community. As a senior IBI (intensive behavioural intervention) therapist, I develop and implement programming for children with autism and work closely with families to help develop skills. I must admit that I found this article refreshing with its focus on the joys that children with autism often offer. Parents can become so focused on making gains that they forget to enjoy all the little moments of joy. As a parent of three children, I always try to encourage the families I work with to enjoy their child just as they would any other child, and to embrace those little moments of joy that children with autism so often provide. — Rebecca Grezegorczyk, St. Thomas, Ontario.

Fabulous! I raise not one but two boys with autism and I can attest to the fact that finding “the joy” can often seem like a futile and frankly impossible feat. However, I too feel, and always have, that my boys’ state of being should be seen as a blessing. I honestly believe that people living with autism have a great deal to teach the “typical” world. T’is the human experience magnified, is it not? — Marlowe K, via Todaysparent.com.

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.

One Good Teacher Makes All the Difference

Filed Under (Acceptance, Adam, Autism and Learning, Inspiration) by Estee on 14-04-2011

Adam has a new teacher at school. Immediately, she ripped down the clutter on the walls that distracted Adam. She has Adam learning about money, in “taking circles” with the other children. Reports are Adam is doing well in school and wants to pay attention. Before this teacher, we were worried about Adam’s attention and even tried Ritalin for a couple of days. It just took two days and I couldn’t take watching my son transform into a person I didn’t recognize — his eyes glazed over and his legs twitched uncontrollably. Adam lost his joy and personality which seemed like much too big a sacrafice even though he was completing tasks like a robot on speed. I polled numerous parents who do have some success with this and asked how long it actually takes to get the meds “right.” Some parents said “years,” and “never,” because a child continues to grow.

I don’t have the stomach for it. That’s what I’ve learned as Adam’s parent. I look at some parents and see what levels of creativity they have in awe. I can’t muster the energy to build castles, a volcanic model… yet. Okay, I’m not that bad. I do lots of things with Adam. Mainly, I enjoy just being with him — going for walks, to the park, drives, to restaurants, and playing games here at home. I enjoy learning to play music again and Adam often plays the piano next to me — I like that and it comes naturally. In the summer, we enjoy swimming. I just don’t have the stomach for the endless trial and error to get Adam to become “normal.” In the quest for a cure, I have seen that Adam loses his essence. So it’s official: I can love him and have my limitations too.

In my journey, I’ve learned that other people have to be his teachers now. It is good for Adam to learn from others. I see him becoming more independent and communicative at home. I am really good at loving him, and well, being his parent. I get top marks for that, I think. So I’m thrilled that one teacher can make such a big difference — that Adam can pay attention without medication. It should make us all think, as parents, what we can do to help proliferate this need for great teachers and schools — to create lucrative enough opportunities for teachers to want to stay in the profession, and with our kids.

Sure, I don’t know what the future has in store. My ideas of it are always shifting. I’m just trying to have faith that everything will work out the way it is supposed to.

On another note, I’ve been wanting to write that Adam had his ninth birthday party on Sunday. Most of the kids from Adam’s school have never attended a birthday party before. Like them, Adam rarely gets invited to parties. It is but one unfortunate fact of the autistic life that people need to know and understand. I try to create opportunities for socialization and had typical kids in with the group. I hired a company that brings snakes and an alligator in order for the kids to be engaged and kept a lot of structure, which was successful. The “special needs” kids were so grateful and polite. I heard a lot of thank you’s that day.

Later in the week, my mother sat in my kitchen. “That was the loveliest kids birthday party I’ve ever been to,” she said. “The kids were so nice.” Her face changed to a look of awe. “Usually you go to birthday parties with typical kids and they are all spoiled and complaining. These kids were so mature.” I felt eubuillant when she said that because I felt it too. If only everyone knew. If only everyone knew that the kids with challenges are not “behavioural” because they are spoiled, but because something in the moment is truly frustrating and difficult. If only they could have seen what my mother recognized.

Maybe we’d be invited to more parties.

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.

Wretches and Jabberers Coming to Toronto April 9

Filed Under (Acceptance, Activism, Inspiration) by Estee on 24-03-2011

Hope to see you there, April 9th in Toronto!

the fukushima 50

Filed Under (Inspiration) by Estee on 16-03-2011

I woke to Peter Armstrong from CBC News reporting on the radiation surge at the Fukushima Daiichi nuclear power plant in Japan. What a disaster of proportions only imagined by me, as I watch images of towns completely destroyed by water. On the television screen the water appears to roll in calmly. Then, as houses are torn from their foundations and begin crashing into others, I get a sense of what this image, in real time, may feel and sound like.

The ruin in Japan is almost unbelievable; this country which prepared itself, by code, for such a natural disaster. Yet, parts could not hold. I began to think about the 2004 Indian Ocean Tsunami, where friends stayed in Sri Lanka and told me their story of how the water surged to their hotel. My boyfriend flew there the following day. He showed me pictures of the ruin, recounting the despondent men searching along the beach for their missing wives and children.

A group of Sri Lankan women posed for him despite the atrophy. All bunched together as if for a Facebook party photo, their teeth and eyes gleamed. I couldn’t tell from a picture if they were just happy to be alive, or happy to be in a photo taken by a Westerner. Even that simple act brought happiness. Or was their happiness innate?

Which brings me to the Fukushima 50 — those employees of the nuclear power plant in Japan. They were left at the plant to assess damage and cool the reactors with seawater to avert a possible meltdown. It’s not going well. Still, they remain to try and avert a disaster — to protect others. These fifty or so men will die. Their exposure to the radiation will be too much.

Fifty men. A group of smiling women on a ravaged beach captured in a photo. Bravery and human spirit are remarkable gifts.

Bless them all.

Creative Behaviour

Filed Under (Art, autism, Autism and Learning, Inspiration) by Estee on 09-02-2011

I’m thinking a lot about behaviour today. I don’t often re-post the articles of others, but in my search, I came across this blog: Forward: FWD (feminists with disabilities) For A Way Forward.

A study recently released in Delaware found that disabled students are more likely to be suspended for ‘behaviour problems.’ More specifically, while 20% of the students suspended1 were disabled, disabled students only make up 14% of the student body. The study questions this disparity, asking why it is that disabled students are at more risk of suspension although there is an established body of law that is designed to specifically provide protections for disabled students, and to limit the circumstances in which they can be suspended.

The article asks, not ‘why are students with disabilities more likely to be suspended,’ but ‘what makes disabled students behave badly?’ I personally think that’s the wrong question. What is ‘bad behaviour’? How is this being defined, and who is defining it? It’s good to see some mandatory accountability in the form of tracking discipline numbers and reporting them, but accountability is only one part of the equation. If districts are not taking action to address the disparities, reporting them doesn’t make that much of a difference.

And are schools adequately identifying disabled students? While there has been more of a push in recent years to identify and intervene when disabilities are observed in the classroom, there tend to be racial and class inequalities when it comes to diagnosis and treatment. Likewise, there are disparities in identification; a teacher may attribute differences in learning and communication styles to disability in a white child, and ‘bad attitude’ in a nonwhite child, for example.

The approach to this particular educational disparity seems to be focused on what ‘makes’ students ‘behave badly’ instead of asking whether teachers are being adequately trained to work with disabled students and asking what ‘bad behaviour’ is and who is defining it. It assumes that everyone should (and can) engage in specific patterns of behaviour and it suggests that ‘abnormal’ behaviour patterns should be punished.

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

When nondisabled people are the ones defining ‘normal’ behaviour and deciding what is bad and worthy of suspension, inevitably you are going to end up with disparities in student discipline. When teachers are not provided with adequate training, when they are dealing with classrooms that have too many students in them, when they are being burdened with a lot of additional work outside the classroom, a tinderbox of circumstances is created and disabled students tend to lose.

Suspension is a serious punishment. Students missing a month or more of school is a serious problem. Until we reframe the way that we talk about classroom behaviour, we’re going to continue missing the heart of the problem.

— article by s.e. Smith

I quote this because I’ve been writing about behaviour recently, citing the issues with have with how we teach autistic people because their “behaviour” is, purportedly, the “issue” of learning, or at the heart of, we are told, “learning how to learn.”

Instead, I’ve coined recently the term “creative behaviour,” and am watching Adam learn and gravitate on his own. How do we continue to foster the creative process? How can we move away from thinking about autism as a set of behaviours, implicitly “bad.” How, is the ultimate question, do we help children like Adam, express themselves?

Let’s think about this for a bit — what we know about creativity and the work we can produce. Let’s step out of the autism box and all of the implications we press upon autistic people (for the label alone) and think about what it is we are really trying to achieve.

Creative thought is the ability to think about the world in unique and fresh ways and convey this to the world. By bringing our unique thoughts to others, we help to shape the way we do things, and the way we think about other people. Creative thought also helps solve problems. We hire people to do a lot of problem solving for us, yes?

I now turn to Twyla Tharp, author of The Creative Habit: Learn It And Use It For Life.

There’s paradox in the notion that creativity should be a habit. We think of creativity as a way of keeping everything fresh and new, while habit implies routine and repetition. That paradox intrigues me because it occupies the place where creativity and skill rub up against each other.

It takes skill to bring something you’ve imagined into the world: to use words to create believable lives, to select the colors and textures of paint to represent a haystack at sunset, to combine ingredients to make a flavourful dish. No one is born with that skill. It is developed through exercise, through repetition, through a blend of learning and reflectin that’s both painstaking and rewarding. And it takes time. Even Mozart, with all his innate gifts, his passion for music, and his father’s devoted tutelage, needed to get twenty-four youthful symphonies under his belt before he composed something enduring with number twenty-five. If art is the bridge between what you see in your mind and what the world sees, then skill is how you build that bridge.” (p. 9)

Yes, skill is really important. A way in which to convey meaning to others is vitally important. The rituals and habits we establish are the practice we need in order to produce something. Creativity sparks when we stare into space, have that second snack from the fridge, putter, and when we appear to be doing nothing at all.

Adam takes piano lessons once a week. We’ve adapted the lessons, and his fingering is getting pretty good. I started teaching Adam to learn piano in a more traditional way a couple of years ago, even though we’ve learned to accommodate the lessons. He learns from a teacher who expects him to practice everyday and who can be stern about him sitting at the piano. In this case, Adam needs a bribe. I’ll ask the teacher to make him work for the candy, and he’ll oblige and finish practicing. Okay, it’s hard to learn piano in the traditional way. Yet, like Twyla says, creativity is a habit. It requires tons of preparation. So we stick with the program.

I’m teaching myself how to play the guitar. I struggle with the chords, my fingers just beginning to become numb at the tips; hurray, I’m building my first callous on my left index finger — a good sign. I pick it up every morning while Adam waits for his ride to school. He comes over and strums a good rhythm. He smiles and then gets really into it and forgets I’m there. A couple of days later, as I’m making a second cup of coffee, Adam goes to get the guitar leaning against my bookcase. He takes it to the couch and begins strumming on his own. He’s focused. This time, he doesn’t want me to help him.

Two great examples, I think, between the art of repetition and practice, and the space to explore. Rather than seeing Adam as behavioural, because he may avoid that which is difficult in formal practice (I was the same, by the way, when I was a kid), I explore the value of both methods of teaching and learning.

Art and music have been part of my entire life. I’ve taken music lessons with the strictest of teachers. When I thought I could fart away in art class, Sister Collette (don’t you just love that name that belonged to a Franciscan nun?), scolded me every week if I submitted a project late, and then loaded me with more work and deadlines because of it. While I was artistic, I didn’t think an art teacher would be so strict. “Art,” she said, “will teach you the greatest discipline more than anything else in your life.” I probably worked the hardest when I was in her class, where I stayed for my entire five years of high school. Art was an elective course, an option. Art wasn’t a “prerequisite” like math and science. We think of art in trite ways — all we have to do is be gifted, talented, and the muse will bless us.

Na uh. Art, like life and very much like in teaching autistic children, is the ultimate example. There is something intrinsic in all of us that we can express, and need to express. We find the tools to help us express it, and usually the ones that we most gravitate towards, but that doesn’t mean learning how to use them is easy! We work daily becasue the manifestation of our inspired thought is more difficult to express to others.

What I’m trying to say is that teaching autism is an art and has to be viewed in similar ways. We find the tools (aka “accommodation”) and we teach the child how to use them everyday. We repeat, but we do not de-value the unique process of taking in the world (aka: like when they are appearing to “not be in the room” or “in their own world”). And as the living art forms that all humans are, we must also as teachers and parents, forget looking at autistic kids as a Diagnostic Manual of symptoms and behaviours. For the human body and mind, in it’s infinite wisdom, finds the tools with which to also express iteslf. Let’s learn how to use them.

Parenting An Autistic Child

Filed Under (Acceptance, Autism and Learning, Inspiration, Parenting) by Estee on 08-02-2011

We’ve been peaceful around here. This morning Adam picked up my guitar that I’m learning (really slowly), and he played it himself, strumming and enjoying the reverberating sound. I guess watching me and other people has inspired him. He already takes piano lessons and that’s quite a formal learning process that he doesn’t always like — we adapt the lessons but this type of teaching still requires those old reinforcements (I call them bribes… let’s face it they work and that’s exactly what they are. Must watch out though, he knows that he’ll get that candy if he acts silly too). So, with the guitar, I want to let him explore. I took Royal Conservatory lessons for many years growing up. Piano teachers never liked when I sang in plays, or learned music by ear — which I was really good at doing. No, they were set in their formalized teaching method and there was no way I was allowed to waver. “It’s either the play,” said one of my piano teachers, “or piano.” I didn’t understand why one had to come at the expense of the other — it was all about music. I listened and won a few first place prizes at the Peel Music Festivals every year, but I played a lot more when I did my own thing. Perhaps we need more room for marrying creative exploration and formalized teaching. There’s a lot of treasure that’s discovered from staring out of a window, and learning things in our own unique way. It’s part of the creative process. It’s creative behaviour.

Despite my occassional worries (I’m a human being, a parent, that should say enough), I’m steady where Adam is concerned. When worry overwhelms me, I start reading more, reaching out and then I realize that I’m on the best track we can be on. The issue with parenting autistic kids is that there are too many opinions about how to teach and how to parent — hey isn’t that the case for parenting all kids? So many opinions.

What kind of parent am I? I ask myself. What am I capable of doing? After listening to how other people do things (or how they think they have to do things, particularly in the field of autism education), this can make a parent’s stomach churn with anxiety, and I think it’s okay to say enough. After doing the due diligence work, there comes a point in all of our lives, whether we are parents or not, to follow what we think is right for us. Reading any latest edition of The Autism News or any other study will make your head spin. I’ve made the PECS, the visual schedules, I’m teaching Adam how to type independently (it’s coming along well), he goes to a good school where I see he is learning new things, I seek input, advice, and lots lots more. It’s what a parent does. I’m not a teacher, yet I’ve learned to work with them. I’m not a therapist, but I’ve learned to communicate opening and share ideas. When I heard Rita Jordan once say on CBC Radio One that parents have to follow their own values in parenting an autistic child, I knew exactly what she meant. How many of us are listening to those voices inside?

Adam needs me to be his parent. With open arms and the love, he snuggles up to me for comfort, and I happen to be really good at this thing called love. He doesn’t need to know what I do for him behind the scenes. When he comes home, he just wants me to love him…as he is.

“I Had A Feeling That I Belonged”

Filed Under (Family, Inspiration, Joy, Single Parenthood) by Estee on 07-02-2011

Everyone who goes through a divorce will attest, after a significant chunk of time, you can feel cast out, a little lost.

It will be a year since Adam and I moved into our new home on February 14, ironically, Valentine’s Day. As I prepared the house for him to move in, I purchased a sign that I placed on my mantel: “Friends and Family Gather Here.” I knew what was important to me. I knew I wanted to finally build my own place where Adam and I would always belong. This coming Valentine’s Day, although I hate the Hallmark cheese, I’ve got something really special to commemorate: creating love and a warm place to belong. This is a celebration.

People say that you have to live with intention. Well, I guess I did that. I make lists, I put my intentions out there a lot. I wanted to build tranquility, beauty and a happy home for Adam. After some difficult transitioning in the first few months (you can read those posts from a year ago), Adam adjusted. A bitter winter unfurled into spring and summer. Our friends came. Then, my big family on my mother’s side. It has meant so much to me, and I know, for Adam who beams when he sees people here.

Before I got married, I used to play in bands, work in art, write (I’ve always written) and paint. I’m back at it. Adam loves it. Our home is filled with simplicity and lots of music. As I learn to play the guitar again, he strums while I learn the chords. I’ve also taken up my piano playing and Adam played improvised with me for over a half hour last week, proud that he could create something with me. It was just the two of us in the basement, communicating in our way.

I’ve just learned how to play Fast Car by Tracy Chapman on the guitar. I love this song about clawing one’s way to a better life. Belonging is a big theme in my life. Ironically, it’s also a big issue for disabled people.

“Me myself I got nothing to prove.”

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.

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)…

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.”


About Me


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.