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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, April 16, 2006

 

Rare Flowers

Quite a week…my first Passover Seder, Adam’s school party, his fourth birthday party out in the yard, spring's first sunshine blessings. I have many stories in my head and I haven’t had a spare moment to write any of them down.


Adam's fourth birthday party Posted by Picasa

In the midst of my anxiety that everything be organized to perfection, I decided to add a little worry over Adam’s academic future. Family is hearing things about schools – autism schools. Special needs schools. Here in Toronto, many of the LD (“learning different/disabled”)schools do not accept children with autism – “too disruptive,” one administrator commented once to me over the phone. Some others have hummed and haa-ed, but have “invited” me to send in a registration form with a hefty non-refundable deposit. There is the day school that may still agree to my plan to implement a supplementary IEP-type program. If this doesn’t pan out, there is the home-schooling option – an option says Businessweek’s Michelle Conlin, that a “many number of affluent parents [are implementing as they think] they can do better than any school.” (February 20, 2006)

Hand it to Bonnie Ventura, who commented on my post A Weekend Thought to Change the World. She has been “in this” a lot longer than I, and frequently directs me to an article already written on one of my thoughts or “epiphanies” on autism, acceptance or education. I specifically wish to direct everyone to Thomas Armstrong’s paper “Special Education and the Concept of Neurodiversity.” (See This Site for more ideas on education) As I said in my previous post, if we look at the issue of educating those with difference in the opposite direction, if we do not view people with deficits, but instead regard their strengths, we could affect education in a positive way. Despite the difficulties, still, in finding a suitable educational match for Adam, I realized from Armstrong that special education has come a very long way since the 1970’s. He blames the system, not the special educators, who have to “work within a system that requires that they treat their students as disabled. As many a parent or teacher has pointed out to me: how are they going to get special services in the first place unless we get them labeled with a disorder?” So this current disability discourse, this view, cannot set up people with differences for success.

In Canada, parents who sue the public school system, or fight for ABA services beyond the age of six, must fight within a system that will continually suppress special needs, if not oppress them. I once wrote last September, that I believed these ABA court cases were hindering the education process and success of our kids. I now will elaborate that these is more likely the case because the system continues to frame and define people with autism as disabled, unable to care for themselves, instead of providing support and education throughout an autistic child’s academic career. When we presume all people competent, with multiple intelligences, with varying levels of ability on this tape measure called life, we enable people to become contributing members of society.

When Adam was diagnosed, the diagnosticians paid special attention to keeping Adam at a particular ADOS score “so he would be eligible for services.” I didn’t particularly know what that entailed at the beginning of the process, and I soon abandoned those government services. Current ABA programs offered by Toronto Preschool Autism Service, are lacking at best. Young people calling themselves “therapists” are setting up “behaviour shops” endorsed by this government agency. Desperate parents pay monthly fees for the agency supervisor, who meets with the parent only once a month, and send in their therapists who the parent has to pay additional hourly rates – thirty to fifty dollars an hour. Other services, like Floortime, RDI, incidental play, occupational therapy or speech language therapy, are not approved by the government as services that can be subsidized, even though they can benefit a child with autism. The agency here in Ontario paid for some “Direct Funding” so that some programs could be done in the child’s home. Such a program would have to have a psychologist – another hefty fee – oversee the program. This agency saw that they couldn’t control home-based programs, so they are beginning to withdraw the Direct Funding option and insist that families send their kids to their “approved centres,” reminding me of the Bettelheim days when parents were considered ineffective at parenting their autistic children, or blamed for their autism. In Bettelheim’s day, children were institutionalized.

When I look back and see how Adam is doing without this government directed program, how Adam can receive the unique one to one program at home that I have created with him, with the help of my personal team, within an integrated nursery school that works with my team as well, I can’t see how the government model can work, because it still strives to homogenize autistic education and training, when autistic people are all unique. The cost of running a home-based program is still hefty, and I am always afraid when the government wishes to become involved in Adam’s programs. I do not think “the system” is set up for independent training, or leaving Adam’s future in the parent’s hands. Yet, this is what has benefitted Adam the most. My involvement in his school will not be anything less.

In this example, I feel that Thomas Armstrong is right – that moving beyond this discourse, these models and institutions for autism would change our education system as a whole, and treat every individual as, in his words, a beautiful and rare flower. He posits reasons to reconsider to change our educational system:

“…Research has been coming out about newer disorders affecting larger groups of people. Harvard psychiatrist John Ratey, for example, has written about `shadow syndromes,’ which are milder forms of psychiatric disorders that afflict far more people than are currently identified. Other researchers have suggested that half of all individuals will experience mental illness sometime during their lives. It seems to me that while I’ve been attempting to focus on the positives in the lives of children and adults with special needs, research and culture have been moving in the opposite direction, finding more and more things wrong with more and more people…Recently I’ve discovered a new concept – neurodiversity – that I believe provides a means of reversing and moving beyond this expanding disability discourse. Neurodiversity is a term that was first used in the Aspergers/autistic community by an Australian disability activist named Judy Singer in that late 1990’s…This new term has great appeal because it includes both the difficulties that neurodiverse people face (including the lack of tolerance by others), as well as the positive dimensions of their lives, something that is generally missing in the disability discourse except in a token way…

Instead of wallowing in the current `disability discourse,’ both regular and special educators have an opportunity to step `out of the box’ and embrace an entirely new trend in thinking about human diversity. Rather than putting kids into separate disability categories and using outmoded tools and language to work with these students, a perspective based on neurodiversity invites educators to utilize tools and language from the ecology movement as a key to helping kids succeed in the classroom. If we apply the same kind of diversity model to children as we do to the flora of the world, then we should be in much better shape than we are now.

Consider the issue of inclusion in education. Regular classroom teachers are far more likely to want a `rare and beautiful flower’ or `an interesting and strange orchid’ included in their classroom than a `broken’ or `damaged’ child.”


In this model, in looking at our children requiring different ecological thriving factors, we can reach the goal of addressing our children’s need for optimal growth. This goal is in direct contrast to trying to “cure,” “fix,” or “repair” “remediate” a child’s disability,as Thomas notes. When I look at my four stepchildren, I also see an apparent need to cultivate each child differently – by imposing the same standard on each of them, they can become depressed and stressed about their futures.

Toni Morrison recently said in a Brick interview with Maya Jaggi that “the black people were the first modern people.” She views slavery as “a reign of terror in which the victims were stripped of the normal places for sustenance and had to invent and reinvent…” in that sense they were modern, “not clinging to tradition for the sake of it.”

I had to consider, as I’ve suggested in many previous posts, that autistic people have a unique opportunity to change disability discourse from hereforth – that this dialogue, these debates, this struggle for acceptance, equality and education, makes the autistic modern. The need to reinvent the system, to redefine ourselves as human beings, is of utmost importance at this critical juncture – a point where the media and certain organizations are loud and brash in their calls to cure a type of people.

Last week, I attended a gala organized by my new friend – Dr. Nehama Baum -- “The Possible Dream Gala,” for the MukiBaum Centres. Tables were reserved for some of her students and I met her son Muki, who is forty-six, with cerebral palsy and who is deaf, for the first time. Others, with various differences, got up and spoke, danced. My husband and I purchased a painting at live auction – a collective effort by young children with complex disabilities who were believed to be hopeless and incapable of doing anything. For me, it is a symbol, a talisman, that everything in life is possible if we believe in people. This painting sits in Adam’s room where he does his one-to-one work. Forever, I will tell him the story about these children and what can be achieved if we work hard and believe in ourselves.

Yesterday was Adam’s fourth birthday party. I kept it small as I usually do now – I avoid the loud play gym rentals with a class of twenty children running about wildly. Adam has taught me how simplicity is beauty. I put flowers on the table, a few toys outside, a lovely set up of food and sweets. I hired a percussion troupe which Adam enjoyed at the Sick Kids Enchanted Evening Gala last week. He sat enamoured with the various instruments the drummer pulled out.


Adam and the percussionist Posted by Picasa



Adam the musician Posted by Picasa

I invited six kids and their siblings – four of whom are also autistic – all different, rare and beautiful. The sprouting yellow daffodils surrounded us, but these rare flowers stood out in all their glory. They were a delight to behold.

6 Comments:

Blogger Jannalou said...

I have been struggling lately with the disconnect between what I believe and what my church teaches. My parents raised my brothers and I to be "thinking people" - people who are not afraid to wonder, to doubt, to research, to reach our own conclusions about things that affect us, whether they be matters of faith, career choice, or the people we choose to love. And they did this as staunch conservatives.

I have a different set of beliefs from those my parents espouse. Where it matters, they are the same, but on the outskirts... on the edges, where we have the expression of faith, the espression of belief, the expression of thought and doubt... here we differ. And I continue to question, to doubt, to refuse to simply accept "truth" as it is handed to me. I explore ideas from all angles, I read what I can from other points of view. I do not stick to the known... rather, I enjoy venturing into the vast unknown.

And this is important, this ability to question and explore, for all people - not just in matters of faith, but in matters of education, disability rights, and acceptance.

When I was in first year University, I lived in residence, and my RA signed me up for a club (I couldn't attend the fair). I went to one meeting and didn't return. The club was supposedly about diversity, which I was definitely interested in. But the diversity this club was promoting was limited to acceptance of homosexuality. And aside from being unable to form a personal opinion on that particular topic at the time, I was not impressed with a "diversity club" that was not truly diverse.

The system needs to be changed. Diversity - true diversity - needs to be embraced and accepted. A closed community quickly becomes stagnant and eventually dies, all the while wondering why it's not gaining any new members.

Culture affects us, but we affect culture.

We need to effect change in this culture.

2:47 PM  
Blogger so much for mercury said...

Beautiful post, Estee. Thank you for the link to Thomas Armstrong's paper.

5:51 PM  
Blogger Kristina Chew said...

Happy Birthday Adam!

Many of the details and difficulties and finding and funding the right education for our kids in Canada parallels much here in the US. It's perhaps the gift of our children to us to give us the privilege to foster real change, with them leading the way.

6:50 PM  
Blogger Lisa/Jedi said...

I loved your flower analogy- this is the way I feel B is perceived by the teachers at his school & it's wonderful. He definitely has his difficulties & sometimes exhibits disruptive behaviour, but his teachers speak mostly of the positive impact he has on his class. When he was out of school for a couple days, one of his teachers told me she really noticed his absence & missed his sense of humour & all of the sweet things he does that makes his classroom a nicer place to be. B's school is not specifically for kids with any kind of disability, but a small, private, alternative education school that has a reputation for accepting & doing a good job of educating all kinds of kids. I hope that you'll be able to find such a place for Adam...

9:13 PM  
Blogger SquareGirl said...

"Adam has taught me how simplicity is beauty."

Adam is quite the teacher...

Again, happy birthday simply beautiful Adam!

12:16 AM  
Anonymous Anonymous said...

Love is a force that allows us to find the vitality and ongoing spirit that leads to the fulfillment of a goal.
Communication of that goal is not getting across an idea, but opening opening up an experience.

Scorpio

9:37 AM  

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