After The Wedding

Filed Under (Ableism, Adam, Advocacy, autism, Autism and Intelligence, Development, Research, school, Sensory Differences, Transitions) by Estee on 12-06-2012

Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.

Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.

Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.

Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.

Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.

~

The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.

~

Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.

It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.

When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.

Torontonians: The New Snow Wusses

Filed Under (Media, Parenting, school) by Estee on 24-02-2012

This will date me. When I went to school, I used to trudge through deep snow. No, I didn’t walk three miles like my grandmother did, but there was lots of snow and we weren’t afraid of it. During recess, we’d slide down any hill we could find and even forget our snow pants. The teachers didn’t make a fuss if we came back into class soaking wet. After school, I walked back home; back through the deep snow, even blowing snow, beating like needles against my face. There were no nannies to wait for me and walk me back like there are in the city now. Parents didn’t worry about us being out there in the blowing snow. In their minds, it was good for us to outside almost all day long.

Adam has been home from school all week because of the flu. Finally this morning he woke up jumping. “I’m fine!” he declared as I entered his room. I’m so glad. One problem though: Last night, before any snow fell, I received an email from his school that it might close in case of snow. I was worried this would happen; that he’d be raring to go and get back to school and his friends, and not be able to.

When I was growing up, we never got notices like that. There would have to be five feet of snow outside our door and some severe wind for us to turn on the radio to try and hear if the school was closed. Like all children, I’d wait in anticipation to find out, and if it was, I couldn’t wait to get outside and play in it. Now we get an email suggesting the school may be closed if there is snow. The news gets more ratings with impending weather. They scare people like there’s a hurricane coming and we all better prepare. “Snowmageddon,” it’s now called — just a tad alarmist, I think, as I see a single snow flake float by my window.

The street is clear and the snow looks like it is just beginning to fall fairly gently. I’m emailing and calling, trying to get in touch with anyone who might be checking at Adam’s school. “Is the school open today? There is no snow,” I write.

I know, there’s more traffic. When the roads become icy, the roads aren’t fun to drive on. Perhaps calling in the army nearly a decade ago in Toronto after a big snow storm made everyone a little more cautious. But still. It’s just snow, and we seem afraid to let our children out in it.

Children don’t walk to school anymore. They are nannied, day-cared, and car-pooled to school. Let’s face it, we don’t let our children grow up until they’re thirty-five. Granted, I know when we are talking about autistic children, we all know they require more attention for their safety. Autistic adults may also need assistants when they are older. It still doesn’t mean we have to baby them, nor do they want to be babied. I think our over-protective parenting and super-cautiousness have negative effects on all of society. Now back to the snow…

The school is even located near the subway, you know those things that Mayor Rob Ford wants more of. That means we can even travel under the snow! So doesn’t that mean that there is a way to get around after all? They are calling for five, yes five (wow) centimeters of snow in Toronto today. That’s a far cry from the five feet outside our doorway when I was Adam’s age.

I just don’t know what has happened to us. Could it be that this is the first real snow of our Toronto winter that we’ve wimped out? Are we so excited that we have to declare it a city holiday? What happened to us fearless Canadians and the Canadian winter? More importantly, what is all of this doing to our children?

We Are Still a “Burden”

Filed Under (Acceptance, Advocacy, Discrimination, Inclusion, school) by Estee on 25-11-2011

(Photo Inset: Danvers State Mental Hosptial, Danvers Massachusetts. Credit: Ayslum: Inside The Closed World of State Mental Hospitals, MIT Press, 2009.)

“Autism is a growing burden on society in Ontario,” said Steve Hudson, co-chair of the Spectrum of Hope Autism Foundation. Mr. Hudson is promoting the Kae Martin Centre, a place that will house autism research and life-skill teaching under one roof. I kindly ask for an apology from Mr. Hudson for his unfortunate use of language.

As for the Centre, in one respect, it always sounds like it could be a relief — there are very few programs that adequately teach, or even recognize, autistic strength. On the other hand, when I read in our national newspaper, The Globe and Mail, that autistics must have a place to be sequestered to “learn how to cook,” shivers run up and down my spine. My son, and many others like him, can do more than learn how to cook.

There’s nothing wrong with learning to cook, or being a cook, of course. It is wonderful that there are places being created to learn the skills that autistic people need to learn. But in autism we do know that continued, or Life Long Learning is a must in the making of an autistic life and education. There’s nothing wrong with that, either. In my forties, I returned to university for my M.A. and I’ve been taking courses, and will, all of my life.

Autistic people and their families want to be a part of the community. Autistic people wish to receive accommodation and recognition as whole, valuable human beings. As soon as people present with a disability, odd behaviour, we automatically think of them as aberrant.

I can’t believe sometimes that I still have to write posts like this. I keep hoping that “autism advocates” will actually become educated by listening to the autstic population around the world, many of whom are considered “severely autistic,” but have learned to socialize and communicate by typing, for instance. I am so despondent, admittedly, when I hear that the use of terms like “burden” are ways to appeal for money. What about accomplishment? What about the many autistic individuals who contribute right now? Could we be achieving more for our autistic children, young and old?

We are so behind other disabilities that were once viewed the same way — children were segregated, treated as dumb, assessed as unable to contribute anything to society. Later, such as in the recent HBO Journey Into Dyslexia, these same “children” are now talking about how their disability has advanced society itself. Many of our technologies that we use and take for granted today, were invented for individuals with communication disabilities.

As I read the article, the first thing that came to mind was what kind of research would be housed under one roof? Will it be to understand autistic thinking, processing and ability? How to teach the autistic person? Or are the same founders duped by the ABA is the only scientifcally proven therapy for autism myth? It is not scientifically proven. It simply has the most scientific research behind it. as Jonathan Adler states in his recent book, Challenging the Myths of Autism, “the most evidence does not mean the only evidence.”

I have to be honest. I have mixed feelings of putting Adam in an ABA school. Sure, everyone is nice and so far it’s eclectic, so for us it’s the best out there. Even writing about this, and I feel I put ourselves at risk for displacement where there is really no where else to go. Yet, I have to be honest in hopes for more services for us and every other autistic family out there. I think a civil dialogue about the issues pertaining to autism and their therapies and education is the best way to progress. I do this with Adam’s current school and it’s going very well. I also see that Adam is calmer and happier there. The staff is friendly and organized and have been so helpful to me. I do wonder if there is far too much time be wasted on baseline protocol — testing things Adam has known for years, and I worry about falling more behind. It’s too soon to tell and I’ll report back. From the other point of view, Adam has to get more “fluent,” and I don’t disagree that practice is important for Adam. It is my opinion that Adam’s disability is not fully taken into account by all schools, ABA or not — his catatonic-like movement and inconsitency. This school that I have Adam registered in, however, does teach him what I want them to, like literacy and typing, but of course everything in ABA becomes operationalized. All other methods tend to become ABA methods, even though they didn’t start off that way. What an autism school can do for him right now, where there is such a lack in Ontario, is provide him with better understanding and structure. They also have the ability to help us with some of the more challenging behaviour that arises from time-to-time, and seem to treat Adam with respect for his anxiety. What I am trying to say is that many methods matter and have to be included in the curriculum and in some settings I see this being incorporated more. I am always sending emails about understanding Adam’s behaviour and treating him with respect. I often wonder when people will become sick of me. But I cannot stop. There is a part of me that knows that we all have to work with what’s already out there.

Throwing him into a school with others where there was no such understanding and for Inclusion sake, didn’t work for Adam at this point in time. His current school is willing to deal with what I want for Adam, while making other suggestions and I’m willing to give it a try now that he is older and the method could be more suitable to him. Overall, though, an IEP for an autstic child must include life skills, academics, communication and social skills training, among so many other things. Adam is lucky to have all this and we are always asking questions about priorities and balance. Each autistic child’s needs are very different. What I want is for Adam to be accommodated for these needs in all settings. Adam enjoys his peers, but peers are not taught to accept Adam after a certain age. Adam isn’t viewed in these settings as someone who can contribute. He’s viewed as someone who needs extra help. That someone who needs extra help is viewed as the burden. So I’m worried just about every day. I want Adam to be safe, happy and learning. He wants to be out of the house and with others and he typed a couple of weeks ago “I want friends.” How do I ensure that he is being included in society, programs, and where he also wishes to be? How do I ensure he doesn’t become so bored (because he has a curious mind), because he can’t respond consistently? It tears me apart.

So when I hear of Autism Centres, I get a mixed reactions. I want Adam out and about safely, and he comes out and about when he’s with me every weekend. I get queasy that Centres, and the lack of enforcement of Inclusion Policy in Canada, will continue to force us away from our community, and we become more isolated. I spend hours trying to find activities for Adam where is is happily included with an aide, but it seems to be getting more difficult. My mind is haunted by images of insitutions, even though the last one was closed in Canada in 1972.

We tend to think of mental hospitals as snake pits, hells of chaos and misery, squalor and brutality,” says Oliver Sacks in his introduction to Asylum: Inside the Closed World of State Mental Hospitals. “Most of them, now, are shattered and abandoned — and we think with a shiver of the terror of those who once found themselves confined to such places.”

“Like so many lofty ideals, the asylums failed to live up to their expectations.” Asylums were supposed to be places where disabled and mentally “ill” individuals could learn life skills, do art, create community. We all know what happened to these facilities and the levels of abuse inside of them.

I dream of autism schools somedays, ones that are as well revered as schools for gifted children (as many of our children, once they can start typing can end up there). I dream of Adam being included safely and accommodated in a public school where he is accepted and respected. I dream of people talking of autstic ability seriously as part of autism, not as an anechdote to autism, for that’s just another way of writing autistic people off. On the other hand, I am worried sick about the fate of Adam and where I place him every day. Is he really learning enough, to his abilities? Or are his deficits the only thing that will ever be the target in his IEP? How much time in a day does this single mother have to defend, program and place him?

I want to be happy about a new place where Adam is viewed as someone who can make it, who will contribute, who is intelligent. I have a dream. I know that typical people don’t think they need to care about us or where we will end up. Yet if you really think about it, it is our greatest lesson in the study of humanity. Our growing disabled population challenge our views and the way we treat others. In the words of Michel Berube, of the popular memoir about his son with Down syndrome Life As We Know It: A Father, A Family, An Exceptional Child, writes in his introduction to Simi Linton’s Claiming Disability: Knowledge and Identity about the field of Critical Disability Studies: “I now believe that my resistance to disability studies is a piece with a larger and more insidious cultural form of resistance whereby nondisabled people find it difficult or undesirable to imagine that disability law is central to civil rights legistation…as Simi Linton shows us [Critical Disability Studies] should be central to what we do in the humanities. And perhaps, just perhaps, if disability is understood as central to the humanities, it will evenutally be understood as central to humanity.”

The weight of our morals and ethics about how we treat and regard autistic people may be our real burden. So I guess I’m back at the blog, here, defending our right to be smack dab in the middle of our wonderful city, hoping for Centres and schools that will celebrate the lives of autistic people, their strengths, ability and potential. All I can ask, is to please see us as fully whole, not broken, human beings.

What About School?

Filed Under (Autism and Learning, school) by Estee on 30-06-2011

There is a lot of change facing Adam again and I, as his primary care-giver. After all the years of worrying about schools, I see that we may have a variety of options that may require us to re-juggle our days. I knew this day would come. I wrote about many things regarding schools and it’s not easy to be in the midst of it and have an opinion at the same time. The process of evaluation has now begun: the eclectic ABA school, the public or Catholic school, the online/homeschool options are on my list. Don’t you just love when people think that there is a rainbow of autistic schools out there that actually suit every autistic child on the planet?

The road called “evaluation” is filled with opinion and advice. Everyone has a thought about what’s best. I am taking each word in and processing it slowly. Although September is only two months away, I know this cannot be rushed. This requires a lot of questioning about what’s best for Adam, for his autistic learning style, his levels of anxiety as well as his other interests and needs. I have been making long lists of my assumptions versus the reality of how Adam will best grow, and grow happily.

School is a tricky thing. We tend to view it as the ultimate socializer for our children and a place where they should get everything they need. For any child, I tend to want to question our way of thinking about school (and sure, of course, making this a whole lot harder on myself, as usual).

The United Commission on Human Rights Statement on the Right to Education, written in 1999, reads:

The core human rights standards for education include respect of freedom. The respect of parents’ freedom to educate their children according to their vision of what education should be has been part of international human rights standards since their very emergence.

In her book Home Educating For Autistic Children: Paths Are Made By Walking, Terri Dowty and Kitt Cowlishaw write:

We all know just how difficult it can be to reclaim the responsibility for our children’s education — or to decide not to relinquish to a school in the first place. Parenthood is riddled with guilt, under-confidence, and a sneaking fear that our children might be better off in more qualified hands…

A child is to school as bread is to butter. Perhaps that was true to some extent in the days when knowledge was a restricted commodity; however, we now inhabit a world where access to information on any subject imaginable is only a library ticket or a mouse click away. As society changes, the sacred cow of education has come to resemble a rather less exotic domestic beast, prompting thousands of parents to take the leap of faith into providing it themselves, in co-operation with their children.

I have to decide soon what is best for Adam’s day, which could be a combination of things. I will be dedicating my summer (and I’m sure other falls and winters) to this. I can relate to the pressure of outside opinion, or the preconceived notions that being in school is better without really thinking about it deeply. Probably, like all things, a little bit of everything is true.

The one area I wonder about, is that autistics do better when they are socialized in a school setting. Certainly, for most autistics, this becomes the only place where they get any socialization, but school programs aren’t always set up just to work on social skills or even just to be social in an autistic way. Again, what kinds of programs are best suited for the autstic person? Where do we all get our social fix? Does this all have to happen in school?

Autistic people are not always wanting to be social in a typical way and it’s not always fair to assume that they must have our same skill set. Yet, it might also not be fair to equip an autistic person with the skills they may require in order to feel like they can at least manage friendships with neurotypical people. This is so tricky and we need to acknowledge that it is and be careful with autistics so that we do not bombard with just neurotypical ways.

Regarding school as the primary source of everything, Dowty and Cowlishaw continue:

We are now so ready to accept that school is the means by which children become socially competent that it is tempting to wonder how society managed to advance beyond grunting until the advent of compulsory mass schooling.

I’m one of those parents, like thousands of you before me, who are pushing through the bush of assumption about what school is and what is best for Adam. There is confusion for everyone out there and even more so for autistic people who have even fewer options.

Wind of Change

Filed Under (Advocacy, Inclusion, Parenting, school) by Estee on 01-06-2011

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Today, June 1st, the winds are blowing strong. I’m not a fan of wind, of things being stirred up furiously into the air. Wind has always made me nervous and I want to be inside. I’m sitting out at the foot of my back door, drinking a Corona, about to abandon the otherwise gorgeous sun. Drinking a mid-afternoon beer is not something I typically do on a Wednesday as I wait for Adam to return home from school. I watch the gold, silent bubbles float up effortlessly. Hundreds of maple “helicopters” pirouette and land gently on my deck, leaving a soft brown carpet for my feet. If only life were as effortless and gentle. A gust comes and the carpet is swept away a new shape is made — they jam in between the deck boards and jut out like a bed of nails. A couple of hours ago, I got a call from Adam’s school. His class, just before summer begins, is being “dismantled,” I was informed. I am dizzy about September. Or is it the beer?

It will take me a while to settle my thoughts as I head down this new path, and to say what it is I want and need to say. This blog keeps me going a lot of the time. It is but one outlet for this autism mom. These days I’ve been using Facebook more because the feedback is plentiful, supportive and the discussion boards can get really interesting.

I’ve also turned to a core group of people. There is the team for your child and the team for ourselves as parents. As a single mother who, with the exception of my supportive parents and friends, must climb mountains for her choices, I continue to learn the value of turning to these people. I’m grateful to those of you, and you know who you are, for being there just to talk as I work out the next climb.

Now, I need another beer as I work out the plan, before I write any more. For the rest of the day, I’m taking off my climbing gear, waiting for Adam’s laugh, and watching bubbles.

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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.