Learning Spaces

Filed Under (Inclusion) by Estee on 28-02-2011

When we have that right space, that corner, whatever it is that we can claim for ourselves, we can loosen up, be creative and explore. It’s the same for children. The world is different. Therefore, learning should be different, and it is certain that all children learn in a variety of ways.

As I did a little google search in looking into how I might design an art studio in my home for Adam I began to think about how we design our schools to assist with learning differences. How can space foster creativity? When I watched this video of Odrup School in Denmark, it struck me how cluttered our current school environments are, and how limited they are in terms of letting our kids physically move throughtout the day. We still expect that learning can only happen while sitting compliantly at a desk.

Uncluttered environments, and ones that allow for sensory exploration, better enable our autistic kids to thrive and contribute as autistic people — not only would they get the sensory input they need in order to be settled, but project-based learning can be more expansive. “Coping” with autistic children and learning go far beyond the autistic person him/herself, and we might look at how we set our children up for failure as the culprit rather than for success. We don’t usually consider these options because it is sometimes easier not to change our ways.This is a systemic issue that speaks to how we believe learning ought to happen based on what we used to do.

What if you could make art out of a math project? In art history, (a course in Piero Della Francesca to be precise), I had to make geometric models of his paintings. Math is a challenge for me, but the project taught me more about math and persepctive than I ever learned while sitting in high school. Do we also not value collaboration? What if we enabled autistic people to work in more collaborative environments? Right, we say they don’t have the “social skills” to be able to do so. But wait. When Adam hears his peers answering questions, he is more apt to answer. He works harder when he sits with his peers in a circle. Sure, everyone needs to also learn to work alone, but it’s a piece of the process. Adam takes a lot of pride with his peers and teachers when he does well.

If we value these things and understand their importance on one level, then why do we seem to think that sitting at a table for forty hours a week is the ultimate way to teach an autistic person? Why do we consider that necessary or even fair? We talk often about how autistic people learn, and in so doing we have to talk about the environments that people best thrive in. Our space is yet another important tool for learning and it reflects what we believe about it, about people, and most of all, if we truly value and want to foster an inclusive society.

Bosch Junior

Filed Under (Adam, Art, Autism and Learning) by Estee on 26-02-2011

Adam brought home a large scale drawing he made with his teacher — about 3×3 feet. He loves animals and started drawing them. Then he starting adding features. He shared the coloured pens, asking his teacher to draw things, using all his own languge, and adding different characteristics.

In this massive drawing, for instance, is an icecream butterfly, a snake dragon with zebra stripes (again, I’m using the language he uses as he is talking more all the time now), a dragon horse, a zebra pig, a strawberry cat, a cookie elephant and lots lots more.

I am loving this — marveling at the picture and how Adam made his imaginary world come to life and how, perhaps, he might be experimenting with ideas. Now, I’m thinking of Adam as my little Hieronimus Bosch…junior.

Ah, that wonderful autie mind!

The “Severely Autistic” Go To College

Filed Under (Acceptance, Activism, Autism and Learning, Inclusion) by Estee on 25-02-2011

Ralph James Savarese, Professor of English at Grinnell College and author of Reasonable People: A Memoir of Autism and Adoption, writes The Silver Trumpet of Freedom in The Huffington Post. It’s about his autistic son D.J. and how he communicates by typing. D.J., featured several years ago on CNN, is a non verbal autistic individual, and an autistic self advocate. D.J. is now in College and of this Ralph writes:

Pitting his fear of an oppressive neurotypical culture, which as a rule continues to exclude people with autism and to prevent them from realizing their potential, against his belief in the power of words to combat prejudice and to change society, he decided to apply to a range of highly selective liberal arts colleges. Although he had made a place for himself in our small, rural community, he had his doubts about the wider world.

The fact remains: very few people whom the medical community would describe as “severely autistic” matriculate to college. By some estimates, only 20 nonspeaking people with autism have ever earned a college degree. Tito Mukhopadhyay, author of three books and perhaps the world’s most renowned nonspeaking autist, puts it this way: “My school is the doubt in your eyes.”

We know of non verbal “severely” autistic people who have been or are currently attending colleges and universities. If they haven’t done that, they’ve written insightful books on autism, are important researchers in the field of autism, and lend perspective about themselves and the human condition. Their contributions are evolving our view of how autistic people and those with other disabilities are viewed. The goal? An understanding of what it means to be accommodated in order to be able to contribute and to be accepted.

Although I click my heels (there’s no place like home) with glee everytime I read one of these articles that raise the bar higher, I have to recall the recent story in my hometown of Toronto where Ashif Jaffer, a student with Down syndrome, was forced to withdraw from York University because he required assistance. It’s an interesting story and one to keep an eye on because many autistic individuals require assistance and accommodation to attend colleges and universities. Also, many are asked to leave precisely for this reason. There is little understanding of why an autistic individual is often dependent, in various degrees, and perhaps too much value placed on the myth of independence — at least the value of it. With new technologies, I see autistic individuals better able to respond and contribute to our university programs, but our institutions of higher education are not quite prepared, and still lack understanding of what assistance means for the disabled to be able to participate as they are in our society.

Huh. As I write, this thought lept into my mind: the typewriter was originally invented for the blind. As a result of this accommodation, I too have benefited.

Onward ho!

What Ritalin Told Me (So Far)

Filed Under (Acceptance, Autism and Learning, Pharma) by Estee on 23-02-2011

Adam went on a short trial of Ritalin last week, not for autism but for the ADHD he now apparently “has.” Please, I’m not trying to be cynical. I just believe in a healthy dose of skepticism for the sake of getting things right for my son. There are many of you with a lot more experience with medications, and I value the input you have given me on my Facebook page.

When Adam turned thirteen months of age, he didn’t walk, he just started running. Now, Adam has to sit at a desk and concentrate. Yes, like so many other families with hyperactive kids, we decided to give this a try. Yes, like so many other families, particularly ones with autistic family members in them, I’m not entirely happy to put Adam on anything and wish he could have more sensory breaks in his day as part of his accommodation. And yes, I’m taking my personal bias out of this because I’m trying to find the best options for Adam. I mean, what if Ritalin, or something like this helps him learn because he can focus more, right? At least that’s the logic that I’ve been hearing, and it sounds reasonable.

It was an extremely interesting trial, and it’s not over. We have debated for years what consitutes a “high or low functioning” autistic person. So often, kids with lots of “behaviours” and non verbal learning disabilities are deemed “mentally retarded.” For proof, take a look at this chart I found today which describes someone who is classically autistic and non verbal as likely retarded or severely delayed:

Many people have delays. I don’t think that that’s the real issue.

Adam is distractable. He is given very junior work at school because he has trouble responding in typical ways. Until he does, he is held back. It seems reasonable on the one hand — generally teachers do not want to go to fast or assume a child understands or comprehends if they cannot respond fluidly. I’m not blaming the teachers. I can see the logic in teaching a child how to respond and trying to figure out what the child actually comprehends. On the other hand, what if a child does and s/he cannot type fast yet, or is so distractable that it’s difficult to know what they comprehend? Ah, the rub of teaching the intelligent non verbal autistic person. (Yes, the ones we have also called mentally retarded and low functioning…but I must be fair… there are more people who get that Adam is a very bright little boy too).

The Ritalin was proof for me about what Adam understands — you can’t learn what he knows in the two days he was on it. It confirmed what I knew all along. He could listen to many instructions, complete tasks, do things I’ve never seen him do before so quickly. And yet. His legs couldn’t stop moving. He seemed agitated. His smile disappeared. He did not want anyone to touch him.

I’ve always thought that Adam was classically autistic. I’ve always known that he understands me, can comprehend so much, and knows how to do so many things. He naturally learns in his enivornment and yet, his disability makes it so difficult for him to focus and respond. Still, he can respond and learn and it appears (to us) like a slower process. He needs to complete tasks and work ten to fifteen minutes at a time. For the work he is really into, he can concentrate for long periods of time (hmmm…usually those are called obsessive interests or preserverations. His would be animals, planets…)

What price do autistic people have to pay? I think so much…more than we would expect of typical children, although we medicate them too. I’m sorry to say that one drug has had to confirm that my autistic son is intelligent and has so much ability. He has a disability that we are still learning to work with, educate and accommodate, yet our kids are part of a generation of trial and error. Sure, we might be a little farther ahead than the previous generation of autistics but I’m not so sure, either.

I do not want to make Adam into a zombie-robot. That’s what I saw (granted it was only a two-day trial and I’ll have more to say as we garner more experience). I’m interested to learn and discover of how to accommodate Adam without taking away his innate joy, smile, and HIS desire to connect with other people. I’m also not certain what part of the autistic learning process it may also be suppressing. Since we don’t value the way autistic people learn naturally, I have to question this too.

I think we should all be asking a helluva a lot more questions. I’m trying to find the right questions to ask.

A Correction for the Today’s Parent Article

Filed Under (Acceptance) by Estee on 16-02-2011

I was featured in the March 2011 issue of Today’s Parent. The interviewer was gracious and overall, felt it was an interesting article. It focussed a lot on me, and I hope it conveyed the work that I believe is not about me, but about all of our children.

Also, it is typical in story-telling and in journalism to use tension. The tension is real, yet I feel a need to clarify it.

First, I never set out to “piss people off.” The name of the exhibition and lecture series was titled The Joy of Autism: Redefining Ability and Quality of Life. The full title was omitted from the article. The lecture series featured Susan Senator, Michelle Dawson, Dr. Laurent Mottron, Dr. Morton Ann Gernsbacher, Phil Schwartz, Valerie Paradiz and Elijah Wapner, Dr. Nehama Baum and Ellen Yack. The exhibition featured Jonathan Lerman, Larry Bissonnette, Barbara Moran (this was corrected with editorial staff but was not corrected in the article), Michael Moon and Brian Henson — yes, all autistic artists and present at the opening. Also exhibitied were artists from the MukiBaum Centre. It was a week-long event and the second exhibition itself ran for a full month, garnering a lot of media attention.

The first exhibition of Jonathan Lerman was the catalyst for this second event — so there were two events in 2005 and 2006.

The intention was to provoke people — to nudge others out of a long-standing complascent idea and portrayal of autistic people as a burden on society, incapable, and worthless as they are, unless they are “fixed.” Society has never looked at itself for its views of disabled people. As a result, disabled people have been subjugated to unfair and inhumane treatments in the name of “normalizing them.”

With solely negative media portrayals, and I saw (and I was not alone — there are many other voices out there who speak the same) clearly how this would adversely effect all facets of support and funding for autistic people in Canada and throughout North America. I saw no sense in the idea that portray autistic individuals as valuable members of our society would take away services. In fact, as valuable and equal members, the idea served to speed things up in a way that would benefit autistic individuals to contribute as they are. Instead in Canada, we were promoting this idea that ABA would make autistic kids “indistinguishable” from their peers, and normalize them. This sounded like a good investment: get the kids back on track and then the government won’t have to support them past the age of 21.

The consequence of a positive portrayal, which did not at all exclude the real challenges of autism in our society, was that it “pissed [some] people off,” namely, those people were those intent on portraying autism as a fate worse than cancer in order to garner financial government support for services. At that time, this was a group of ABA advocates in Canada and subsequent to the Auton trial. Autistic children were called “nightmares,” and “burdens.” These kind of descriptions did not match how I felt, and still feel, about Adam.

What was also ommitted from the Today’s Parent article was that the exhibition and event received so much support from people who wanted and needed this kind of event, and there were so many positive articles written around the world about it. So, it didn’t just “piss people off.” It showed what autistic people could do with support. It showed what types of accommodation were needed to be supported by our communities in order that autistic people be successful in society as they are. The proof of such support is the thousands of subscribers to The Autism Acceptance Project website, which I haven’t been keeping up as much due to the events described in that article.

As such, it is still sad for me to think that others must be so political when we share the same experiences; our children are so similar. When others go out to name call those of us only wanting better services and acceptance of our children in an Inclusive society, it should make us all question one’s motives. True, there are people who don’t like disability. Think, Latimer. There are blogs called “Hating Autism” (it is down now but I recently came across another blog, not worth linking so if you are interested go find it called “I Hate Autism and Retards”). There is lots of prejudice and name-calling of those who have real difficulty and are “different.” This is the prejudice that endangers our families and our children, and in my opinion, all of human kind. The proof is there when one site also documented the murders of autistic children by their parents. There was a monthly body count. I used to have a link to that site, but here is another one at neurodiversity.com.I’m used to this approach and portrayal. The National Post once gave my ex husband and I a forum through which to clarify my position. It is called Accepting Autism and I am posting it again for the same reason I did back then.

There’s been a lot of great press too. In 2010, The Autism Acceptance Project was listed in Oprah Magazine as one (#69 to be exact) of The Top 100 Things That Are Getting Better.

Let’s hope so.

If you are interested in seeing some of that event, please visit www.taaproject.com (The Autism Acceptance Project).

In Praise of Support Workers

Filed Under (Transitions) by Estee on 15-02-2011

I am very sad this evening. It is the sadness of knowing that someone who was part of your daily life has meant so much to you — who has been the centre of our lives.

This person is Adam’s aide. She has never wanted to be named but is in the background of all my posts since 2005, obscured. She is called Adam’s “support worker” in an upcoming issue in Today’s Parent called The Joy of Autism. The March issue hits the stands February 21st.Today, Adam’s aide has given us notice that she will be ending her support of Adam in order to move on to something else — time to grow, move on, as does everything in life. Who knows if she’ll continue her work in this field — she thinks about doing other things now, and it’s all natural, all good.

Yet I sit here alone this Tuesday night. Adam is skiing this evening and knows not that his life is about to change… again. “He’s a duck in water,” says my mom on the telephone as I’m in the middle of writing this. “Wow…wait…wow…look at him go!” I hear others in the background. It’s only his second ski lesson.

He probably can’t remember being without his aide worker. She entered when Adam was 20 months old — just over a month after he was first diagnosed with autism. She has been with us on all the ups and downs of our journey. We have made decisions together, and she has implemented them on a daily basis. She helped me when I was going through cancer and divorce in order to provide extra support to keep Adam strong, while I was not.

It has been a hectic day, but not just for this reason. Another urgent matter helped me shove the news I received early this morning into the background of my day. Yet, when I returned home and all was quiet, and I read that article, the black and white print jumped out at me. She is all over those four pages; the “joy of autism,” the ride — me, Adam and his “support worker.” I am still crying, mascara channels down my cheeks.

Does it take this kind moment to realize how much you can love someone? It’s been eight years — I’d say that’s a good chunk of relationship. I’ve always appreciated her, but parting is such sweet sorrow.

To all you aides, shadows, support workers and therapists out there (there are so many names to call you) please know how much you are, and have been so utterly appreciated. How lucky we are to have such relationships.

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.

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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.

New Behaviour

Filed Under (Adam, Autism and Learning, Behaviours, Inclusion, Sensory Differences, Sleep, Transitions) by Estee on 04-02-2011

We talk often in autism about a dissonance of skills and “uneven learning.” It’s an easy thing to notice or say, but it doesn’t seem that easy to accommodate. Not easy, because we still have the expectation that an autisitic person must respond typically.

Adam has had quite the transitional year. He has gone through parental separation, moved to a new home with me and started a new school where the expectation is that he sits at a desk. His sleep has worsened, and his avoidant behaviour in doing certain “tasks” has begun. And yet, my Adam is talking in full sentences more often, is telling me how he feels, and can play a mean “reciprocal” game of I Spy with me. He can draw well (if given the chance) with perspective that is more sophisticated than his same aged-peers, even if his motor planning, that is line, is not as sure and resolute.

I have to say that when someone talks to me about Adam’s “behaviour” I do think in the old-fashioned sense that he is not behaving “well,” as opposed to looking at what’s causing the behaviour. It still pops up from time to time, and I am concerned that implicating behaviour is a way to not only blame Adam, but put an expectation and onus on him that is not fair. That is but one legacy that ABA left behind, although I’m not commenting on some of the methods used by the practice as part of an overall pedagogy. I bribe him a lot to get things done.

Adam needs physicality, lots of movement, interesting content, and a chance to respond more by typing. He needs more preparation, I believe, to start his day, and a different kind of structure in it. What I mean is, by 2 p.m., the boy is tired. I am still trying to figure out what that structure should look like as I orchestrate new programs and activity in his life. Because, Adam is no longer a baby. He will be turning nine this April.

It seems to me that we are learning about how autistic children learn, or at least I’m learning everyday. My process of learning about Adam and trying to work with his team of teachers and supporters never ends. Sometimes, I sit and stare at the wall, I admit, and wonder why we still haven’t figured this out. Maybe I was secretly hoping we would have by now.

I’ve hit the books again. I’m watching Adam closely as he has trouble falling asleep at night. I watch my own responses to him when I feel tired and frustrated. And one thing that surprises me is that I still am not giving up. I don’t want to blame Adam for being autistic. I want so badly to support him and to have support. I am still trying to articulate what accommodation really means for him. I am constantly evolving my attitude, and behaviour, towards him.

Soon Adam will have an aide who will take him into the community, to help him be a part of it, make friends, take theatre classes and go skiing (he starts next week!). I hope to get him into Special Olympics and keep working with those who have helped us along the way. It is clear we don’t have all the answers yet. But if you have some success stories to share, we’d sure appreciate them.

A Skeptic’s Snowday

Filed Under (Estee) by Estee on 02-02-2011

Just as I thought. The news made a big hoopla about a big storm. As I predicted, we never got the snow they predicted. In fact, Adam and I are about to go out for a walk.

Seems the news is full of hype on all counts, whether it be about autism or the weather. Weather is big business. Except for the Tsunami in Indonesisa. We needed the news reports then. But they never came. I hate being skeptical. Yet everytime The Weather Network predicts weather, and this comes from undocumented personal research, it’s always less severe than they say.

In the meantime, I’m happy to report that after writing my post yesterday, after a while on waiting lists (we’ve been a year on some and still no word), Adam will try his first ski program next week.

Just a another day in the life of a positive skeptic.

The State of Education for Autistic Children (as I see it)

Filed Under (Acceptance, Activism, Autism and Learning) by Estee on 01-02-2011

Big snowstorm’s coming. It starts tonight in Toronto and is supposed to continue into tomorrow.

Adam will be at home. He’ll work on his computer, I on mine. We’ll play piano and a few games. I still haven’t had time to complete his art studio. My work will have to go on hold.

Life’s changing here. Being a single mother has new challenges. I look for time to get things done, as it’s just Adam and I and there’s no one to help me in the early mornings if he’s up too early, or sick. That’s a big difference I’m sure many a single-parent will relate to. Time has become more limited when one has to rebuild, and even learn, from scratch.

So, I don’t like problems thrown at me all the time. I’m impatient. I expect those who say they are experts to help us, not throw the problems back in my lap. When it comes to Adam and talking with those who help him out, I’m not certain they realize that’s what I hear. Sure, we’ve got challenges. But it becomes overwhelming when things are constantly presented as a “problem.” Hearing this for seven years now since Adam’s diagnosis, and maybe this will make sense.

If you are a therapist or a teacher or aide, consider this: that’s all we hear from the time our children are very young. From a parent’s perspective, it’s not only very scary in the beginning, but later, it’s just plain exhausting. In the beginning we scurry like there’s no tomorrow becasue we are trying to find the best program or school placement, and that’s not easy. Perhaps if you are going to present a challenge, offer a solution. I’m fortunate in that I do have people with whom I can strategize. Yet, there are few options out there for autistic people, and even therapists are hard-pressed to be able to find places for us to go. Schools are scarce. Inclusive schools are scarcer.

There are few adaptive services. I spend hours each week not only filling out forms and getting on wait-lists, but also phoning to find suitable sports and other programs for Adam. This begs the question: why are there so few of them? Why can’t Adam learn how to play baseball? I remember how easy it was for my step-kids and all the programs they had to choose from. I’m trying to reach Special Olympics, Boyscouts, ski programs…it takes a while to hear back. For Adam, his options seem so much smaller than they were for his half-siblings. It’s not equal and it’s not fair.

Why should he have to go to an autism school if the autism school doesn’t fully integrate a vareity of tools to support Adam’s strengths? Perhaps I’d go to the autism school if I felt it treated him like the magnificent person he is, addressing the challenges he has, and training him as an autistic person to prepare for college, university, or some other vibrant future. Believe me, if I could find an autism school that was as robust as those belonging to the deaf community, I’d consider it. At least there, using the deaf community as a model, autistic people would be allowed to act autistic, and build their own strong community. Instead, I see schools addressing “autistic defecits” in an ABA format, which I don’t believe works that well for Adam, as it escalates his anxiety. (Side note: and can we hire autistic adult teachers, pleeeze). Repeating skills in that format is good (belonging to ABA and other methods), sometimes positive reinforcement is good, but it’s not very creative because it teaches not so much content as much as it is a way to teach someone how to answer and respond. It’s not necessarily a “bad” thing, it’s just not the only way to teach, and I fear it lacks the engaging content my son needs. It doesn’t foster creative behaviour.

You see, I think discipline is really important. It’s an art to teach a very young, challenged child to be focussed without also inspiring him and building his confidence. With Adam, this is especially difficult. Despite his communication challenges, he has pride, will avoid tasks that he thinks he likely will fail, and is very aware of his inability to communicate like other people. Force him to “put the puzzle” piece in for the 1000th time, and I don’t think that’ll do it. Offer him a candy to do a task, and he knows that if he avoids the task, he’ll get a candy. It works sometimes, but he’s outsmarts us. Still, breaking down tasks into smaller pieces, and repetition is a key to fluency and competence. Marry that with exploration activity and keeping the topics and materials moving along (he’s not a baby anymore), and that’ll keep his interest. I wonder if we just expect too little from him. An inspiring person/teacher, and tapping into Adam’s innate need to be proud of himself, and I wonder…

I don’t think that typical families understand the extent to which we have to hunt for places for our kids to belong, and I believe Adam has the right to be fully integrated and included into our community. I feel I am met with resistance, and I knew this would take a long time. I hope it doesn’ drag on well into Adam’s adulthood. This is a systemic problem. We simply don’t know how to teach autistic people, despite ABA being the purported solution. All we know is how to use a few PECS, schedules, and accommodate sensory differences. Sure, this is a big change from even a few years ago, but I’m becoming impatient. I have not seen any creative programming for autistic people. Is it because we don’t believe enough in autistic people to invest in fully inclusive programs that train facilitators in a vareity of methods that must then be uniquely applied to each individual? Instead, it might be easier to say that an autistic person has this defecit and apply a one-size-fits all solution. As I used to work in public art galleries, and also used to teach young children art through music, I’m thinking a lot lately of helping schools use an art program to teach other topics such as math and science. And if you want to see another extremely creative parent, check out Kyra and Fluffy at thismom.com. Kyra completely blows me away with her boundless energy and ideas. I’m not as creative as she is. I just hope people take a look at some the projects she works on with Fluffy (she homeshools him). I hope, using them as one positive example, that we never give up on autistic folk.

I meet wonderful teachers. I wonder why I don’t see the programs to place them because autism seems of great interest to many. When I consider Adam, I think of just last night as we practiced piano and how he became enamoured with the low G. As he continued to play it, I improvised. He smiled and we made music for over 30 minutes, coordinating together. I think of how he can get so focussed in art-making and all the things we can learn from making it. Art can be therapeutic, sure, but what of all those lost learning opportunities because our teachers are not trained in using these tools so easily accessible for Adam? If Adam is any example, he does well when we find a patient person who listens, who wants to learn how he learns, and who can accompany him in the community that he’s so interested in. I have a boy yearning to try new things. Thank goodness for his camps. There is has learned to climb walls, archery, and many other wonderful skills. He seems happiest at camp, learning from physical activity to quiet art and loves drama and creative movement — hmm.. we hear autistic people can’t do the latter, right? Not so for my guy.

I just thought I’d write this because we have huge scarcity in Ontario and I keep looking to autism websites here and don’t find much. Social skills groups are always full and I wonder what they teach anyway? How to say hello? Play with the plastic doll? Okay, that’s a skeptical comment, but what creative programming exists within the skills that autistic children need to also learn? We can inspire our children. People think we need autism schools, but that’s not necessarily the solution. It seems easy because at least that’s a place to put autistic kids. I like it that Adam sees everyone and that he be seen, and where he can feel competent as he is (this is a problem if we stick our kids in typical schools where they then remain on the sidelines). I still see people wanting to change him and fill in his “gaps.” Certainly, they exist; Adam has challenges. Yes, I hear about them all the time. I see them everyday. I am supposed to be teaching him at home more too — the onus is always on us. How much more time do we have?

Okay, just so this post doesn’t come off as a rant (I hope), here’s a link to Hopeful Parent. Maybe it’s the snowstorm coming, the large piles of paper I have to get through, and a team meeting coming up tonight.

I am hopeful. Maybe I can help out through teaching again. Just one of my many thoughts as I figure out the future these days.

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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.