Estée Klar » Acceptance

Reflections On Our First Decade

Estee — Thu, 12 Jan 2012 03:21:21 +0000

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

It’s So Nice To Have This Time Together

Estee — Thu, 29 Dec 2011 14:48:53 +0000

It is that time of year again when Adam and I spend a bit of time in Florida. Now a single parent, I get to spend a long stretch of time alone with him. There was a time that we spent this period as a family. I am no longer a part of that family and I am okay with it. As the perspective story goes, what we think of as unlucky, can end up as lucky. All we have to do is wait and see. Someone reminded me recently that I have received everything I have ever wanted: love, a family, friends and my child.

The past several years, I’ve been coming down to Florida alone with Adam; my parents often accompanying me for support. I didn’t feel I needed it this year. I am happy in life, now nearly four years away from separation and divorce. Over these years, I’ve taken on some guilt when I’ve had to be away from Adam. I’ve also felt loneliness when he leaves for his dad’s place. I’ve had to learn to accept my circumstances, and recreate a life for myself, and for both of us.

It’s hard to replace a man in the pool, though. I threw Adam into the air, not as high. My shoulders are paying the price. We have lots of fun, but I am not a man; I am not one of his strong brothers, friends, my boyfriend, grandfathers, or father who can toss him effortlessly. I am just his mother — the one he runs to and wants to cling to, here, on vacation. He seemed to accept my shortcomings in the pool. He was laughing at me and then wanted me to teach him how to do a somersault. It is nice to have this time together.

As the sun set over the ocean’s horizon yesterday, Adam sat contentedly in my lap, my arms around him. We sat for a long time and my usually active child just wanted me to hold him as we both looked out to sea. I dug my bare feet in the cool sand, and finally found them, as Adam’s mother, and his family.

Keep It Simple Over the Holidays

Estee — Fri, 23 Dec 2011 18:25:05 +0000

Every year I get asked, “what does Adam want for Christmas (or Hannukah as we celebrate both). I’d like someone to come and take a look at our basement and ask that question again. I’m about to divest years of collected toys and games that therpaists and teachers told us to buy; all in the hopes that it would trigger some reciprocal play or learning in Adam. The same is true for all children. Children are marketed to (and young parents) that every toy will give our children some developmental edge. While I do find many things cool and some even helpful, I believe autistic children are special targets to such marketing ploys.

This is what I bought for Adam this year:

Two 2012 monkey calendars — both identical so we can write out his week and he can predict his day. So he will use one at home and one at school.

One small game of tick tack toe because he is enjoying simple games now with others.

One book. An illustrated Alice in Wonderland.

No more. As I divest the things that we’ve accumulated over the years to clear out our heads, I am also trying to make room for creativity. We are so eager to see a typical response in our autistic kids that we buy, buy, buy. We don’t believe that boredom for the autistic child is as valuable as it is for the neurotypical one.

When I leave Adam alone, I often find him playing with a plastic monkey we bought at the jazz festival this past summer. Or he’ll pull out some favorite books or another toy that he’ll begin to explore. As Adam cries when he’s really frustrated, and after I’ve checked that he’s safe, I leave him to his own devices. I am trying to help him develop his own “struggle muscle,” and not rush in to save him. This helps him now to self-regulate, and it’s working.

It’s best to leave, says Kim John Payne, M.ED and author of the book Simplicity Parenting: Using the Extraordinary Power of Less to Raise Calmer, Happier and More Secure Kids, just a few toys and books on the shelf. It avoids stress and confusion. Store some away, and give away more. I know he’s talking about neurotypical kids, but he does make a lot of references to ADHD and learning disabilities too. As we think of typical kids so we must of autistic ones — we must believe that as Aristotle said, every person as an essence. We are all meant to become something by our intrinsic nature. We can’t develop that nature if parents constantly buy toys to entertain kids. They need to be left alone. Aristotle used the term “telos” to describe it:

“An acorn carries its telos within, from the beginning. Beyond our genetic gifts to them, beyond what they absorb from us and their environment, children seem to arrive with something of their very own, a telos, or intrinsic nature. The essential nature, apparent from the beginning, also points to their future, as an acorn suggests an oak. Our children come to us with a deep destiny — here again, some say spirit — that needs to be heard. It must be honored.” (p.33)

It all makes sense to me as Adam is an anxious child and the more visual noise or distraction, the more confusing it must be to even approach a toy and explore it. In addition to recently enjoying the monkey and books (Adam has a wide array of interests), he has taken to climbing on his bookshelf and swinging from the rope used for his OT swing — a sort of Tarzan manoever that takes me back to my own childhood. Oh how he has fun doing that! He made that game up on his own, with a high surface and a small piece of OT rope.

“Simplification protects the enivornment for childhood’s slow, essential unfolding of the self. You needn’t be a therapist to realize that most kids are quirky, aren’t they? The truth is we all have our quirks, our personalities and idiosyncrasies. We tend to be more tolerant of them in adults, perhaps because we think of adults as ‘fully formed’ and children ‘under construction’ and thus more malleable. Why simplify? Over the years, I’ve come to see how a child’s quirks or tendencies can be exacerbated by cumulative stress.” (p.26)

We have guests over tonight and Adam enjoys that. I’ve had a lot of people over to our home because Adam enjoys people and he’s in his familiar environment where he is able to relax and particiapte more than going to someone’s strange house. Tomorrow we’re at his grandparents like we are every year. We have a quiet Christmas, our small family. We just want to be together and we don’t need stuff to prove our love. I’ve moved from being an anxious parent to one who is really beginning to see how much Adam needs and enjoys my time. No thing can replace that. No thing can also replace what he imagines for himself.

Happy holidays to everyone. I hope you have a very simple and peaceful one. Adam and I will enjoy our New Year… giving our things away.

Patience With That Egg

Estee — Mon, 05 Dec 2011 23:36:20 +0000

Adam and I went to see Seussical at Young People’s Theatre in Toronto. Adam likes the theatre more than he does movies.

I’ve always refused to stay isolated and Adam doesn’t like to be, either. He likes people and outings and even though we’ve been through ups and downs of anxiety, we tend to overcome our obstacles — our own and the ones that seem outside of us. But as usual, I digress.

Adam was his usual attentive self to the play. There were a series of questions afterwards and the theatre writes them out in the program for parents to work on at home. I also sent the questions to school today. I always wonder why there are not more field trips and plays for autistic children. Thankfully, Adam is going to the library a couple of times a week.

Many people don’t think autistic people understand or “get it,” and that taking them to a play or an outing would be a useless endeavour– one that would require too much effort, or parental fortitude and heartbreak to withstand stares. I’ve never been to Young People’s Theatre when a young person doesn’t make a whoop or two. Adam’s not yet a whooper, he’s more of a giggler. Perhaps because I see some parents of typical children sternly turn their disturbed heads (yes, my perception and interpretation…my bias), I refuse to look around. It’s not that I don’t want to. I’m actually thinking to myself hey, who’s the cool kid having the really great time!

Adam’s eyes were glued. His grin was wide, his eyes beaming. It feels so good to watch him enjoying himself. Since he’s been young, even though he has real challenges with expressive communication, he’s given me fantastic glimpses into his perception and understanding. His very attention to the play was proof- positive. Today he wrote me an email (the school lets him email me). One of his teachers asked him what he did on the weekend, not knowing the play at all. Adam replied by typing “elephant sat egg.” Horton was the guardian of the egg. He would not leave the egg or abandon the Whos on that little speck of dust in this mix of Dr. Seuss stories, no matter how awful and skeptcial the Wickersham brothers and other townspeople are to him. He endures the abuse, the naysayers, the people who call him a chump.

I know I have to keep working with others to show how to get more typed communication out of Adam and not give up. At the same time, I’m also thrilled that people are trying and doing. I know I need more patience. I worry and wonder how many hours in the day autistic kids are working on labels, mands and putting together Mr. Potato Head. Even though practice is always essential, and the goals are about attention and things other than the label or putting together a head, the work it takes to collect the expressive communication is big and we need to focus more on exposing autistic kids to interesting material, even when we don’t get immediate reward of a child’s recognition. I think our kids should be asked more complicated questions and working on really interesting age appropriate material. Of course, there’s also the fact that the stuff autistic kids are interested in can seem boring or useless to the rest of us. We need to learn how to nurture these interests. Also beware of objects that autistic children become attached to. Clinginess to baby books doesn’t mean an autistic child doesn’t want to read chapter books. I am reading Diary of a Wimpy Kid to Adam (he giggles), and have no idea yet what he’s getting from it. Although I do know, as but one example, that when we get wild weather, he’ll reach and start reading a book for teens on weather systems. The baby books are a form of familiar for Adam. He uses them to comfort himself and to create order in a world that can often be overwhelming. They don’t indicate what he’s also interested in, or what he’s capable of.

Readiness is essential but there can also be many opinions on what makes an autistic person “ready.” Is it the ability to sit still, act normal, attend for long periods of time? If so, an autistic person may never be deemed totally “ready.” If these are some of the prerequisites to “readiness,” how far held back is the autistic person who’s otherwise sopping up so much in the environment? Adam got his musical notation, to his music teacher’s surprise, very quickly. Learning to “attend” is a social “norm” imposed to people who find that really challenging. It’s not that I don’t think Adam shouldn’t learn that, but it’s not the only thing he needs to learn. Adam needs to learn things that interest him, and like other children, we don’t know what interests our children unless they get exposed to things. His movement and activity is likely the way he learns best, and despite my repetition in life and here on the blog, he is often treated like that round peg being squeezed into a square hole, no matter what my beliefs.

Help, hello. Is anyone there? I’m trying to write with the greatest of care. As I convey ideas about Adam over and over, we need to settle him down safe, on a soft bed of clover.

I guess you can say I’m holding on to this egg.

We Are Still a “Burden”

Estee — Fri, 25 Nov 2011 17:47:46 +0000

(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.

Why Every Minute Is Not Therapy (or a short case for why it shouldn’t be)

Estee — Thu, 08 Sep 2011 23:19:04 +0000

The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

Jack Layton

Estee — Mon, 22 Aug 2011 20:14:29 +0000

Impromptu memorial today at Toronto’s City Hall:

Click Here to read his Letter.

One of his favourite songs:

A Breeze of Good Feelings

Estee — Tue, 14 Jun 2011 21:17:21 +0000

I’m going to ramble about good feelings. Following the shock of last week — hearing that Adam’s class was going to be dismantled — I felt like I was in another hurricane. That short story ended quickly, though, as the school came through to accommodate Adam for next year. They too understood the tumult he has been through. For me, it was a wake up call to our future. It’s not that we don’t know something’s coming, right? It’s interesting how something has to happen to get us to the next level. The occurrence reminded me that it’s time to leave the past behind, and get back to learning the next phase of advocating for Adam’s needs. It’s also time for him to learn that he’s autistic and what’s involved in that so he can begin advocating for himself. It’s not that I don’t think that he knows he’s different. What he needs is a toolbox of self confidence and skills to be able to stand up to the people I stand up to now as a neurotypical person.

It’s another reason why I love Autistic Pride Day which is on June 18th. I imagine what positive messages we can give to our children while they are growing up (for there are otherwise too few) — that difference is neither good nor bad, it just is. We are all unique individuals with differing needs and strengths. It’s important to be proud of ourselves, even if we have our challenges. We are proud to be autistic, or family members of autistic people. I would like to help empower and enable Adam in this way. A walk next year (as there is little time to prepare this year), would be a wonderful, peaceful way to walk proud.

Change has blown in in so many ways. It is because of times like the school news that I need to celebrate Adam, myself and the people we love. We are losing his aide of seven years and are welcoming a new one into our lives. We’ve hired a new male aide worker on weekends who I hope will become a part of Adam’s life. His team is shape-shifting and I see Adam soon sitting around the table for part of our meetings and later, for all of them as he tells us what he wants to do with his life and how we can best support him. Sometimes all of these changes literally knock me off my feet they are so exhausting, which is why I take as much time as I can to beam. There is love all around and I don’t take it for granted. There is a person in our lives and lots of music and good feelings all around. I no longer feel I’m swimming way off in the deep ocean. I believe I am arriving at shore — or the ship I’ve been building is at least sturdy enough to lead us there.

The really simple things make me extremely happy. The pummels and disappointments — whether they be from our past or about school — make these moments even more special. I can tell we are settling as I can’t wait for Adam to come home from school. I used to be so tired and worried about Adam’s distress. Just last year he was spasming so much he needed an EEG. Now, he saunters into the house with his lunch bag, flicks off his shoes and runs down the hall to the kitchen where his snack awaits. After reminding him to wash his hands, he perches himself at the counter and noshes at red peppers or fruit. If that’s not enough, he’ll ask (lately) for popcorn with vinegar (yes, that’s right). He’ll get the popcorn himself and after learning that pressing too many buttons on the microwave actually locks it, he turns to me and asks, “Popcorn, puweeze.” He is not quite satisfied until I open the package and turn on the microwave. Then, he’ll go into the pantry and grap the large plastic jug of white vinegar. “Vinegar, puwezze.” He hands over the heavy jug so I can pour it on top (yep) on top. He moves back to the counter stool and gets the popcorn from the bottom of the bowl first so it’s soaked, and chews on one piece at a time

I can also tell we are settling by our routines. Adam nestles into my arm at the end of each day while I watch Peter Mansbridge on The National. Sorry, Peter, but you put my son nicely to sleep. Adam his happy to watch with me quietly for a while. Then his eyes begin fall shut slowly and when he’s breathing deeply, I carry him to his bed, even though he keeps getting heavier. As I pull the baby blue blanket right up to his chin, he is grinning with his eyes tightly closed. “Goodnight my sweetheart,” I say. I kiss him and leave the room, remembering myself at his age, just as happy when my mother or father did the same.

I feel like Jodie Foster in Little Man Tate. Sure, we are not as verbally articulate, but we are no less expressive. We understand each other. We have our many ways. Like them, Adam and I lie around and watch the clouds together; and I hold him tight when the lights are low and the house is quiet except for the whir of traffic outside.

Without disturbing too much privacy, I think there are only a few things I can share as Adam’s ally — simply because I need to express these good times — like his love of music, for one. Adam also has some cool dance moves. This is a combination of raising his arms up in the air to swaying them with the rest of his body side to side, to a full on rock on jump and hand flap — and let’s not forget his electric smile. Adam is increasingly adept at piano and tries his hand at guitar (I think he prefers guitar — no lessons involved). There is no question that he has artistic ability (see photo).

This could just be becoming the happiest time in our lives. That’s why the news of last week was so upsetting because it takes so long to find balance and when there are additional challenges with a child, the last thing one wants is more. I know there are more challenges ahead, but today I decide to take in the light breeze.

I was once told when Adam was first diagnosed that this was going to be a “marathon, not a sprint.” Well, after a few years now, I don’t just think it’s a marathon…it’s Ironman. All of the work is really important, especially in a world that still does not fully understand and accept autism, but it’s not everything. It’s not what Adam will remember or what will necessarily trigger his heart. He’s going to remember when I carried him to bed and pulled the blanket under his chin. He’s going to remember lounging out in the yard and watching and naming the clouds with me when I’m gone. I think the work that we do goes without saying, but it’s also important to stop and listen to the music, to experience love. It’s everything.

Autistic Pride Day

Estee — Tue, 24 May 2011 21:07:04 +0000

This is a day I always promote. Autistic Pride Day occurs on June 18th and the t-shirt designed above is by Jason Ross. Let me use Jason’s words to describe the importance of the day, since Jason is autistic himself:

Neurodiversity is just as it sounds, it is knowing how we are special, unique, and have a very our very own belief system that should not be imposed on other people. Why do we have Neurodiversity? If we didn’t have different kinds of minds and we were not wired differently, we would be considered the same. Wouldn’t that be boring? What would life really be like? Before people consider every one thinking the same way, we should be considering how others think too. There are many different kinds of minds and different ways of thinking and different ways of living. The only thing we can learn to do the same is having proper social skills to incorporate ourselves to function with each other to form relationships. It does not mean change our way of being and thinking. We need different perspectives in the world to teach each other about life. However, we do have free will to think of our different way of being, but that does not mean you can impose your ideas on others. It just means speaking your mind and telling your stories. The way we all can fix society is by any one in the world communicating their views to share it and evaluate what others say, but not getting angry or upset when we hear what they say. Listen to the suggestions and/or thinking the other person may be telling you, and adjust it to your state of being to become your unique ‘YOU’. Any one can believe whatever they want to, and can be what they want to be to succeed in their life, but they must choose to accept it. Otherwise someone will always be influenced by another and eventually Neurodiversity disappears. How sad would that be? Think about it!

I have been reading lots of blogs and Facebook posts these days. I continue to read the debates between terminologies: “a person with autism” or “autistic person.” The discussions illustrate the importance in how humans define and see themselves. The commentary suggests the tenuous ground where the term Autism still lies. The debate is important to discuss society’s responsibility to understand and accept people no matter what their label or inclincation. We are just human, after all.

It is also true that no person is their label. “Classified” individuals are treated as second class citizens despite the intention that labels are meant to be beneficial. A diagnosis can be a huge relief for parents and autistic individuals because there is no more mystery on why there are differences in learning and communicating. Parents and individuals can, if they are willing, stop berating themselves. Yet, we continue to segregate labeled people. The psychological impact of labeling and marginalization can be debilitating. While labels are invented to serve, they can also limit ability because people with learning disabilities are not believed to be individuals who can contribute to society or succeed. When a young person believes that of themselves, this is the devastation. A label can make it difficult for people to see what they are good at. This is but one more reason why Inclusion is an important goal for all people. We are always more than our labels.

Autism, like any other learning difference or disability is not equitable with intelligence. Thinking exists outside of reading and communicating. Explaining this to the to a person who only hears about autism from some charity ad that espouses that autism must be cured can be demoralizing for the person advocating for themselves or for their child.

When I read the Toronto chapter’s Autism Speaks’ ads in Canada’s Globe and Mail recently, I always want to ask– since they are raising money for genetic testing for autism — how such research will help with “early intervention?” I think the question we should ask is not only how, but what kinds of teaching would help a very young autistic child? Also, what about the autistic adult who gets looked over past the age of twenty one?

What is the end goal in helping the autistic child (I will continue to use “child” because the premise of the research is help infants)? Is it for them to respond like other children? If so, why is it acceptable to expect that of the autistic child and not of the dyslexic or blind one? In any classroom, a blind person has the right to ask a teacher or Professor not to make visual references in order that they can learn better. A visual learner also has a right to ask. Do you think this is hard to accommodate? It’s not. Teachers possess varying abilities and we can appropriate them to different groups of learners. Autistic learners are not offered this choice. They must learn to “behave” like “normal” people through ABA despite my own anechdotal evidence here at home that many tools, and an understanding of Adam, is the most helpful teaching toolbox of all.

Finally, dear fundraisers and researchers, if we were to genetically screen for autism, what percentage of new parents do you think, under the current bioethical climate (can I call it that?) will be the beneficiaries of “early interventions” for their babies? Is this marketing supposed to suggest that if we know the genes that cause autism we will understand everything there is to know about the autistic person, including how to teach them?

No matter what you think about “autistic person” or “person with autism,” let’s think about the bigger picture. Our children and the way they view themselves (hopefully as whole, entitled and able to give back), are the reason I celebrate Autistic Pride Day…every day. Please support and buy Jason’s t-shirt.

Never Too Late To Sign

Estee — Mon, 16 May 2011 03:01:06 +0000

You can sign the Declarataion for the Support of Community Living Here: http://www.institutionwatch.ca/petition-app

This from the Canadian Centre for Community Living 2010 Report Card:

Improvement still needed…

• Among children with intellectual disabilities
receiving early learning and child care
services, 32% have been denied this service
at some point in the past.

• 30% of children with an intellectual disability
had to leave their community in the past
twelve months in order to attend school.

• Only 33% of children with intellectual
disabilities are in high inclusion school
settings.

• Children with an intellectual disability are four
times more likely than other children with
disabilities to be attending special education
schools (16% vs. 4%).

• 41% felt threatened at school or on the school
bus within the past year and more than a third
(36%) were assaulted at school or on the
school bus.

• 52% of young adults with an intellectual
disability (aged 20 – 29 years) are neither
working nor attending school, compared with
12% of those without a disability.

• Young adults with intellectual disabilities are
five times more likely than those without
disabilities to have no formal education
certificate.

The Morning After Losing Adam

Estee — Sun, 15 May 2011 14:03:43 +0000

As you read yesterday, I lost Adam for about 10 minutes. It seemed a lot longer. When I returned home for the day, I was feeling down. I thought, just when things seemed to be going so well…another challenge. Then, my ceiling leaked from the rain.

Ah well, I said to myself as I opened my eyes this morning. At least Adam had the sense to re-enter that church all by himself. At least there was no tragedy. At least my roof isn’t caving in. Someone is coming to look at it hopefully later today.

I think it’s good to let the down go through us — to hibernate after an event like this. But I also reached out. I contacted every team member, my friends. I was so surprised by the deluge of support. I realized, that even as I think I’m alone, a single mother, I am not. I learned this by not keeping yesterday’s event to myself. I realized that I cannot do everything by myself.

I am really grateful to my friends, family and Adam’s support team who are always there for us, and even you readers who take the time to lend your support by commenting here and on Facebook. For me, writing is a way to survive, to think, to overcome my challenges. I cannot let them fester. Other people manage other ways. I manage this way.

I spent many years learning how to build a strong team of support. I realize that network has been carefully woven and I’m in awe of the time it took. I hope to be able to write a piece how I was able to create this web of support, and the trials of putting it together.

When we are building teams for our children, we have to look at good fits. We have to feel good about who is working with our children. For myself, I could not hire people who treated Adam in a way I did not want him to be treated. It was simply an intuitive way of parenting him. Building a team later became supported by what I was reading and hearing about certain therapies and ways people with disabilities have been treated. I never realized it, but I have a distinctive parenting style. I appreciate sensitivity because it suits Adam’s needs. I love kindness. I adore when people realize he is a person full of potential, despite his challenges. As I built a team to support Adam, I realize I also built one to support me in my ability to parent him. I realize my limitations and my need for others to help, and how we work as a unit. I am his mother. I am suited to loving him well. Although I teach him as a parent would, I am not a great teacher. I reach Adam by being gentle, not impatient. His interest in music and art is nurtured by my interest and activity. I’m good at a few thing and not good in others. When I think Adam needs to learn something I cannot teach, I am happy to hand him over to those who can give him those other gifts.

I ended the evening yesterday talking to one of my best girlfriends. She has a typical daughter. She talked about how she lost her daughter at the cottage. So many parents have reached out and told me their tales of losing their children — typical and autistic. When I rethink everything, I realize that exploring is a rite of passage. Adam wants to be independent — the very trait we want our autistic children to learn. He wants to explore, hide, and thinks excitable voices are really funny. I wonder if we target the autistic child for wandering, like so many other challenges, and forget about how the typical child does the same things as our autistic children do. The age ranges may be different, but sooner or later, it happens. Sure, I’m nervous about this and will be on top of it as will his team. Yet there is a side of me that thinks — tragedy averted, of course — that he made his way back into the church. He wants to explore and do his own thing. He tried to make his own popcorn the other day and wrecked my microwave. I mean, how many parents have the same story of their homes being near destroyed by a clever, well-meaning child?

It’s time to support Adam again and make a new plan. We have to avoid danger and we have to support his need to explore and be independent now. I just have to learn to keep up.

Focus On The Positive

Estee — Mon, 18 Apr 2011 17:02:37 +0000

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

Estee — Thu, 14 Apr 2011 22:20:54 +0000

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

Estee — Thu, 14 Apr 2011 13:13:59 +0000

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

Estee — Tue, 12 Apr 2011 19:57:57 +0000

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

Estee — Thu, 24 Mar 2011 19:22:03 +0000

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

the fukushima 50

Estee — Wed, 16 Mar 2011 14:19:45 +0000

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.

early spring 2011

Estee — Tue, 15 Mar 2011 19:57:37 +0000

With a glimpse of early March sun, I got an itch. I can’t stop myself from setting the date to open the pool, to think about the gardening I want to do this year, and to imagine where Adam and I will be a few years from now. I am imagining his, ours, and my future.

Next week is my birthday. I foraged through old photos of myself that I thought were taken as they say, “just yesterday,” only to realize that some of them were taken ten years ago. Adam will be nine years old this year. In the flurry of major life-transitions, I haven’t really realized how fast the time has gone. Going into my third year of single motherhood, possibilities are just beginning to dawn on me.

I have to acknowledge the writer gals who have kept me company along the way. When author of Falling Apart In One Piece, Stacy Morrison, said it took her five years to feel like herself again, I am now beginning to understand. Elizabeth Gilbert, whose quote from Eat Pray Love was included in the movie said, “Ruin is gift. Ruin is the road to transformation.” I can begin to see that too. I know the book was popular and I’m not supposed to like it, but like millions of women, I did. I love memoir and it was well written. I often pay my quiet homage next to the glow of night light to Joan Didion, Virginia Woolf, Louise De Salvo, among many others.

Richard, another student from my writing class said to me that we don’t “heal” from the events or people that wound us, yet we can make it become part of us. We are both divorced and his words were well-timed. We can’t expect to abandon pain completely, but we can learn and grow from it. We can become something different.

Beauty isn’t in perfection. It’s the potential we can see among the ruin. I imagine myself like spring itself — me, Estee, the one born on the cusp of spring, on an early Monday morning in a soft and gentle rain — nurturing the earth to sprout again. I am grateful for the circle of time and that spring has returned.

So have I.

The “Severely Autistic” Go To College

Estee — Fri, 25 Feb 2011 19:38:05 +0000

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)

Estee — Wed, 23 Feb 2011 14:19:21 +0000

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.