Take Joy In Every Step

This morning I awoke to the same rhythm – get up and right to the computer and keep working before the opening of The Joy of Autism: Redefining Ability and Quality of Life. We open with the exhibition on October 5th.

Over an extra-large cup of coffee with milk and too much sugar, Adam quietly ate his eggs – he prefers them sunny side up with salt. I cut them – the task of poking them with the fork still a little too difficult for him. Max, his older half-brother, came downstairs and Adam’s face lit up. He grabbed a ball and persistently tried to engage Max to play with him.

Now, for those people reading this who don’t know much about autism, this was a pretty huge thing. Two years ago – a year ago, even – Adam would not engage anyone in play. If he saw a group of kids, he would head in the opposite direction. Today, he was persistent, laughing, throwing the ball to Max, kicking it. “Play!” he said a couple of times, in between expectant jumps, and giggles – and Max got a lot of hugs in-between.

This afternoon, the children in his JK class began playing with the ball in a triangle formation. Adam looked on. He edged his way in. And further in, still.

“Last year he was really tentative about joining in and this year I really see he’s trying to play with the others,” said his head-teacher, in that sweet, sing-songy preschool voice that I know will end all too soon as Adam gets older.

So I know that my patience is important with Adam. We never forced him to play with others. We tried facilitated groups, we practiced, but we never forced him. We just exposed him. I certainly worried. But the moment I stopped letting worry rule our lives, was the moment that life began to happen.

How can I not feel joyful for him? How can a parent not feel joy in every baby step? Is this not the purpose of our lives?

When my grandfather died in 1984 from a severe allergic reaction, I was devastated. I was his only grandchild and we had a very close relationship. In one week, his body caved in on itself. I entered intensive care, finishing my Grade Thirteen exams -- the ones that get you into university or not -- to see his body shrivel in upon itself. I told him I loved him. He couldn't say it back, but I knew it was on his lips as it was one of the rare times his body moved after I'd said it. When he died I chose for his epitaph:

The purpose of life is life itself. (Goethe)

This is the only life we have, folks. Take the joy.

Understanding Autism

This article is from Action Network in the UK. Kev Leitch was interviewed:

‘My daughter, Megan, was three when she was diagnosed with autism. She was classified as ‘low functioning’ or ‘Kanner’s’ or‘classic’ autism. At the time we were devastated. We knew nothing about autism and all of a sudden we had to become experts and yet at first we seemed frozen in what we came to recognise as grief.

There are five stages of grieving. We traversed them all. We went through stage one quickly. Denial is a way of trying to stay in blissful ignorance. But we quickly accepted that this wasn’t good enough. It was real,it was happening.Anger was next. We lashed out, trying to find something to blame. We settled on vaccines, mainly as Megan did have an atypical reaction to her DTP. It was easy to make that connection. And once we’d settled on vaccines we went straight to stage three. Bargaining is an easy trap to fall into once you agree to blame an external‘something’. Please God, if you cure my daughter then I’ll never haveanother vaccine given to her again. Take away her autism and I’ll convert to Christianity. But nothing changes and it’s easy to fall into stage four. Depression is the worst stage. You worry about money, about health, about family and it never seems to stop eating at you. Every day. Every
look you get from your boss when you come in late. It all contributes. And then, it lessens. You start to look at things afresh. Or we did anyway.We took a deliberate decision to stop fighting autism and learn about it from people who were like our daughter – autistic. What we found amazed us.

One of the first pieces of writing I came across was that of Jim Sinclair, an autistic man. He’d written an outstanding essay entitled ‘Don’t Mourn For Us’. In this essay, Sinclair says: “Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.”

Grief

And then he goes on to say: “But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.”

And it hit me that that’s exactly what I’d been doing. I’d spent so long fighting and bargaining that I’d forgotten about the needs of my little girl. From that point on, our outlook changed. We relaxed and read as much as we could from autistic adults so we could try and see the things that might matter to our daughter about her life rather than what might matter to us about her life.

And we also started to look objectively and rigorously at the science of autism. We found out how wrong we were about vaccines for example and I discovered a whole subsection of quackery on the internet made up of people claiming to be doctors offering bizarre, untested therapies for hundreds, sometimes thousands of pounds.

As Megan grew and we became more and more relaxed, she became more and more relaxed too. Soon she was exhibiting learnt skills such as using a computer fluently. She did this as we become increasingly prepared to come into her world. If she was rocking in front of the TV, so would we. If she was singing at the top of her voice in Sainsbury’s then so did we. Suddenly, we weren’t fighting; we were sharing and living as a family. I eventually discovered that this approach had a name and a concept: Neurodiversity. This is the idea that autistic people do not need a cure but
do deserve respect and recognition for who they are.

This is not the same as doing nothing. Megan still undergoes speech and language therapy for example but it means not ‘fighting autism’, rather accepting it and working with your autistic child in a way that they get the most out of. It’s essentially meeting your child halfway.

Megan at age six is not the same child as Megan at age three. She’s more confident, happier, more settled and progression is marked. Thankfully, we were able to listen to her in a way she felt comfortable with.’

Kevin Leitch’s company Left Brain/Right Brain is
about two things – autism and web design.
Sometimes the two combine but mostly they’re
distinct. Here in his own words Kevin, as father
of autistic daughter Megan, candidly reveals his
belief that autism is not a life sentence,
worse than death or an epidemic.
▲ Megan is now a confident little girl.

Thanks, Kev.

Connie Said It!!

Let's give her more airwaves. Thanks to Autism Diva who put her on the blog. I'm borrowing for our Toronto audience once they click from the TAAProject website to here.

Point to be taken: Nothing about autistics, without autistics:

AFTER VIEWING EACH VIDEO, CLICK THE BACK BUTTON TO REACH THE REST OF THE VIDEOS IN THIS POST.

VIEW CONNIE ON VIDEO BY CLICKING HERE

Also watch The Empowerment Conference VIDEO CLIPS FROM FINLAND HERE

Watch Kev's VIDEO "POISON" HERE for those who don't empower, but take all fact and spirit away....

And then his spirit soaring video BEAUTIFUL AUTISM (an inspiration for The Autism Acceptance Project Video)

and Dinah's positive and boundless energy with the PosAutive project

and Janet and VIDEO ON ALEX's RUN ACROSS PEI.

More fact than fiction, joy is a choice, it is boundless, it is....human.

A law cannot guarantee what a culture will not give

That quote in the title is from Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights. I often wonder if legislation is just a prelude to a forced change in the direction society needs to think about the disabled. But it is true that the law can only take us so far, and if society won't give our children equal access, it will always be difficult for our children.

Adam did his first Sportball program in a loud, echoic gym today. At first, he seemed a little frightened of the noise. His shadow let him run around a little, until he felt comfortable in the setting. We want him to enjoy Sportball, not find it unpleasant. He ran into her arms and began laughing. He watched his peers. He felt the materials. Then, he picked up the hockey stick and made a score.

The coach said he is going to call me tonight. I have to say that this is the only thing that puts a pit in my stomach -- when a teacher or coach says they have to "call" me. I'm hoping that my paranoia is unfounded. I hope he won't tell me to take Adam out of his program.

You see, Adam needs to learn this way until he becomes comfortable in this new and loud environment. He needs to be able to adjust to his setting, run around a bit, get used to things, observe his peers, and then eventually, he can do it. He was the only kid to sit in the coaches' lap at the end of the program today. One thing Adam has down pat: affection.

I want him to stay in that program. I could see he got used to it and that despite the bumpy beginning, enjoyed it in the end.

But the coach, or any teacher for that matter, may have his way of doing things that doesn't include Adam and kids like him. Rules might be too rigid. My joy is in Adam's success - because I understand that his success comes from a place where he has to work so much harder than others. But my sorrow lies always in other's non acceptance.

I heard that we have to earn joy in this world. It doesn't always land in our lap just like that. When it does, it is golden, like Adam. But mostly, joy is what we make of things. I will await the call, and do what we all have to do: advocate for Adam so that he is accepted in the program (if they are so willing and open-hearted), and empower his teachers with information about Adam's learning style and success today... Make the teacher proud!

If You Could Make Your Autistic Child "Normal", Would You?

We as parents of autistic children have so much to learn from other disabled "communities." I am considering showing this film, The Sound and The Fury at The Joy of Autism: Redefining Ability and Quality of Life event this October with a follow-up discussion.

The film is over the debate about implants to make deaf people hear. We see the debate concerning isseus of identity, community and how those in the hearing community view the deaf and how deaf people feel with these views. I'm not going to say much else here, other than this film is important to watch in the context of the autism debate: to cure, to normalize or to accept autism, and what acceptance means for each of us. I look forward to your comments.

CLICK HERE TO WATCH CLIPS FROM THE SOUND AND THE FURY

You're Not Me!

“You’re not meee…you’re not meee,” says Adam in a sort of boyish voice, with a staccato emphasis on not, and a raspy, melodic, somewhat forceful, me.

I chuckle at his wisdom. “That’s right Adam -- I’m not you!” I’m not sure where he got this phrase – I certainly don’t use it. It sort of reminds me of my step-daughter’s four-year-old willfulness when she said, “You’re not the boss of me!” Is this Adam’s version of self-assertion? Self-definition? Self-awareness?

Sometimes we think our autistic kids adopt phrases and don’t quite know the meaning of them – at least not immediately. This might be the case, but he always has a sense as to where those phrases should go.

“Adam come here.”

“You’re not meee.”

“Adam, it’s time to brush your teeth.”

“You’re not meeee.”

It baffles me. He doesn’t look at me intentionally as he says it – not like my step-daughter Maddie used to, with crossed eyes, and hands on her hips, just short a stuck-out tongue. Her posture hollared, “Defiance!” Instead, Adam just says it automatically. It sounds more rote. But I can’t assume it has no meaning. No, not my willful little guy. He does share some of the same genes as his half-sister, after all.

After I brush his teeth, I turn on a video before bed that is visually stimulating. I haven’t put this one on for a while now – computer generated dancing shapes to Mozart’s Eine Kleine Nachtmusic. His hands go above his head as he makes a type of pirouette. His feet are moving quickly – rat a tat tat – to the music and he does a little turn. His cherub cheeks are jiggling with each step.

“Hey Adam, you’re dancing!” I say delightedly.

“You’re not meee,” he exclaims.

What do we mean by Inclusive Education? Some Comments from Others

Excerpt from “Parental Models Go To School,” from An Unexpected Joy:

How you think you should behave as a parent and how you think your child should be taught come of the same deep place inside. Schooling is a very emotional topic. We all know stories of horrible things going on in classrooms, and there is much righteous fodder for the educational reform movement. But rigid thinking about a school’s structure erupts from the same dark source as rigid thinking about a successful family.

It gets even more emotional when you throw in disability. With the abandonment of the developmentally disabled by the medial system, the societal responsibility has been shifted to the school systems. A lot of good has come of this. Speical services can most conveniently and effectively be served up in this setting. What an experienced special education teacher or occupational therapist or autism specialist has to say about a problem is much more likely to be helpful than what your physician has to say. There is no disputing the advantages to our kids from the ADA and the development of services and accessibility that has resulted from this legislation.

I am always shocked when I run into resentment toward special needs kids and the amount of money spent on their education. I am not aware of people resenting speech rehab services for their elderly stroke relatives or post-closed head injury rehab for young adults after their skiing, diving or auto accidents. The public is quite naïve about medical insurance. Many people in my state are so used to extraordinary coverage that they think of their insurance cards like a charge card, with the bill going to someone else. The notion of insurance money being a pooled, collective resource is lost on them.

A more visible form of pooled money is the public-school dollar. This is probably because of the election of local school boards and public voting on school millage issues. Parents feel they have more control over this money and are therefore more vigilant stewards. So they resent the extra dollars it takes to educate disabled kids. They see it a smoney not being spent on their kids. They are unaware of the shift of this responsibility out of the medical dollar – which they view unrealistically – into the more visible public-school dollar. The idea that these dependent individuals will otherwise end up on welfare, another pooled money pot, is lost on many of them. Basically, the biggest bang for the buck is the money spent on schooling these kids. It will result in less money being spent from other pots.

The passage of the ADA resulted from years of persistent, effective lobbying by disabled individuals and their families. Part of that early activist movement was the radical notion of inclusion. The concept of least restrictive environment was introduced and determined to be an important goal in meeting the needs of special education students.

This was good. It brought many problems out of the closet. All kids benefit enormously from effective inclusion programs. Both the special-needs hvcild and the typical child benefit, as they do from anything that increases healthy diversity in the classroom.
…Ineffective inclusion programs are another matter altogether. When they’re bad, everyone loses. But in too many schools, the trend is to push everyone into the mainstream. When that happens, an individual assessment of the child’s needs isn’t considered, and inclusion is hyped as a goal for all special-needs children.

Nic didn’t benefit from inclusion. The worst year of his school career was the year he spent in the mainstream classroom. And this was with the cards stacked in his favor. He had a marvelous teacher, whom he knew from his PPT (pre-primary impaired) classroom. He had a loving and experience parapro. The parents of the other kids in his class bent over backward to include him. It was simply too much for Nic. There was too much noise, activity, and visual stimulation. All that enrichment was right for the regular kids, but it was toxic for him.

I have two concerns about mainstreaming. The first is what I call malicious mainstreaming. Parents who are still in denial about their child’s prognosis commit this. They insist on mainstreaming because they mistake the process of role modeling provided by the other students for a normalizing process. When a year goes by and there is no change in their child, they think the teacher has done something wrong or someone is to blame.

My other concern has to do with the basic nature of humans. My son has known he was different from the get-go. He has communicated this to me in many ways, most of them nonverbal. When you put a child who is profoundly different in with a bunch of fully equipped kids, everyone knows what’s going on. If the children have been brought up well, they are polite and practice acts of inclusion as they are able to. Many are very kind. If they have not been brought up well, they can be cruel. Neither of these is an ideal environment because both preclude the development of a real peer group.

…I believe a critical mass of time spent with real peers allows true friendships to grow. This is as good as it gets. We found this in Nic’s contained classroom.

A good teacher uses these real relationships to teach. Renee, Nic’s current teacher, is the gold standard in my book. My son knows about “showing heart” and “giving zingers” because these behaviours are illustrated and discussed in his classroom every day. Renee is able to make these principles concrete.

The continuity we have been blessed with has allowed a real classroom culture to develop. This in turn benefits the younger kids who come into the room. For my son to be a role model for a sever-year-old is huge. He sees himself as competent and feels pride. This is true growth. It helps interrupt the cycle of constant dependence that so mnay of these kids suffer from. When they’re around the regular kids, they are never fast enough or smart enough or acceptable enough. This is an exhausting way to live. If we didn’t have a contained classroom, I don’t believe these trusting relationships could have developed.

The children in Nic’s class are remarkable. They show pure and simple tolerance of diversity. They are sib-like with each other, which means they can be joyful with each other and then turn around and give each other a hard time. The kids gloves are off, and they’re on as even a playing field as they’ll ever get. This is a much more balanced environment for them to grow in. Mainstreaming cannot provide this kind of intimacy.

…One of the specialists we saw was a woman who has studied the educational needs of autistic people for more than twenty years. She gave me a wonderful gift. AS we were going over the summary of the recommendations they were making, which was all in educational and pscychological language I didn’t understand, she paused. She looked up, right at me, and said “Basically, people with autism never stop learning. I’ve seen people learn to read at eighteen. I’ve seen people learn to live independently early in their thiries. They aren’t restricted by these developmental stages like regular learners seem to be.”

She opened a door for us. She gave Nic a future. I don’t even know if it’s accurate, but the notion that Nic will continue to grow and benefit from enrichment changed the way the horizon looks to us. It feels a lot different than the smaller and smaller world we envisioned for him at the worst grip of our fear.” (From An Unexpected Joy by Mary Sharp, M.D., pp 102-108.

Here in Toronto, the gap is too wide. It’s either an “autism school” that provides ABA, or trying to get Adam into the mainstream, with accommodation. Sometimes I feel the most flexible teachers and administrators will help us get through. But ultimately, it is the real acceptance of diversity that will change the education paradigm. Other times, I worry that if we don’t do inclusion well enough, autistic kids will still lose.

Most autistic adults hated mainstream schools because they were never accommodated. The goal here is not normalization, the goal is education. The best-ever for autistic kids, that not just manage behaviours, but educates to their fullest potential. Further, we have to consider what disabled children have to offer non disabled ones. Learning goes two ways. These can be done within existing schools or privately, but we have much work to do to define that large gap that currently exists between segregating the disabled, inclusion and the right education. That is why a continued drive towards acceptance is urgent.

Consider the world wide movements and actual practice of inclusion around the world:

Inclusive education - a worldwide movement
From Centre for Studies on Inclusive Education, United Kingdom
by Sharon Rustemier

Inclusive education is gaining ground. Throughout the world, teachers and others involved in education are working to develop positive educational experiences that all children and young people can enjoy and benefit from, together. For disabled children and those experiencing difficulties in learning, this means inclusion in mainstream schools and classrooms alongside their non-disabled peers. For all children - and adults - it means a more enriching and rewarding educational experience.

Internationally, the drive towards inclusion is fuelled by a number of initiatives and treaties, including the UN Convention on the Rights of the Child (1989), the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993) and the UNESCO Salamanca Statement (1994). Together, these documents recognise the human right of all children to education which is inclusive. 193 countries have signed the Convention on the Rights of the Child, with Somalia being the most recent in May 2002. All but two countries (Somalia and the United States) have also agreed to be bound by the Convention by ratifying it.

Some countries have made significant advances towards promoting inclusive education in their national legislation. Examples include Canada, Cyprus, Denmark, Iceland, India, Luxembourg, Malta, the Netherlands, Norway, South Africa, Spain, Sweden, Uganda, the United Kingdom and the United States. Italian law has supported inclusive education since the 1970s.

As the 1999 report by the Organisation for Economic Co-operation and Development (OECD), Inclusive Education at Work: Students with Disabilities in Mainstream Schools, states: 'The rights of students with disabilities to be educated in their local mainstream school is becoming more and more accepted in most countries, and many reforms are being put in place to achieve this goal. Further, there is no reason to segregate disabled students in public education systems. Instead, education systems need to be reconsidered to meet the needs of all students.

From rhetoric to reality

This drive towards inclusion is not only rhetoric. Rather, the reality of inclusive education is transforming the lives of millions of children - and teachers - in countries across the world. According to the OECD report, there is a decline in the proportion of students in 'special' schools in most countries. CSIE's Index for Inclusion, which helps ordinary schools break down barriers to learning and participation, is being taken up in a range of countries around the world (see page 16).

Diversity in the mainstream is increasing in many countries. The vast majority of disabled children and young people in Iceland attend their local schools. In Italy, more than 99.9% of all children in the state sector are educated in ordinary schools. In the province of New Brunswick, in Canada, there are no 'special' schools - all children are educated in local mainstream schools.

A national study on inclusion in the United States in 1995, carried out by the National Center on Educational Restructuring and Inclusion, reported a huge growth in inclusive education for students with all levels of disability. A report from the Ontario School District in Oregon stated: 'The only criteria for a student to attend any of our six elementary schools, our middle school or our high school is they must be breathing.'

In Uganda, the human rights of disabled people are enshrined in the Constitution and sign language is recognised as an official language. Deaf children now attend their local schools, with appropriate support to enable them to learn. One observer noted: 'Instead of sitting silently and unnoticed in their classrooms, they now have sign language interpreters provided.'

In the district of Douentza, in Mali, West Africa - one of the 'poorest' areas of the world - villagers worked together with outside agencies to set up a much needed local school, which disabled boys and girls attend together with every other child. One of the teachers said: 'To begin with we had the commitment to include disabled children, but we did not really believe that they could be in school. Now we have seen for ourselves, and we have moved from commitment to conviction.'
These are but a few of many examples.

No room for complacency

Despite these significant advances, however, large numbers of disabled children and young people throughout the world - including in the United Kingdom - continue to be subjected to negative, deficit-based language and exclusion from good quality mainstream education.

Some countries - such as Italy, Uganda and Norway - clearly see inclusion as meaning all children and young people learning together in mainstream provision. But all retain a dual system of 'special' and ordinary education.

The existence of legislation supporting inclusive education does not necessarily mean that inclusion is happening in the everyday lives of children and young people. For example, there is a strong Government commitment to the philosophy and goals of inclusion in India, but this is not yet fully reflected in practice. German national policy and legislation support inclusive education but high proportions of students are placed in 'special' schools. The Norwegian policy of not providing 'special' schools is undermined by the practice of parents sending their children to 'alternative centres'. In Denmark, a pioneering country in terms of inclusive education, the number of children placed in 'special' classes has been markedly rising.

Not about money

It is not simply a question of funding. It is a common assertion that 'full' inclusion - all children and young people learning together, including all disabled children - would be too expensive. Yet the example from Mali demonstrates that inclusion can happen whatever resources are available.

International work by both the World Bank and OECD has shown that it is far more expensive to operate dual systems of ordinary and 'special' education than it is to operate a single inclusive system. In Reykjavik, Iceland, local authority staff calculated that the cost of educating a child requiring the most intensive support in a mainstream school was no greater than the average cost of sending students to 'special' schools.

The real problem lies with the historical investment in separate, segregated systems of 'special' schools, the lack of political will to make inclusive education available to all, and the uncertainties of some parents that inclusion will benefit their children. But throughout the world, people are seeing the benefits of inclusion for themselves. Everywhere, those who have experienced inclusive education - including providers and disabled and non-disabled students - are convinced that inclusion is the way forward.

From strength to strength

These experiences must be built on. The urgent task is to change hearts and minds, encouraging openness to the values and aims of inclusive education and a commitment to the human rights of all children and young people. Non-government organisations and individuals must also continue to lobby Governments, and raise awareness among teachers and parents of the advantages of inclusion. People directly involved in inclusive education need to share their knowledge and experiences with those just starting out.

Progress needs to happen on all fronts, from Governments passing legislation and formulating policy to people in schools working inclusively with real students. As one school director in Swaziland said: 'I had thought the problem of integration of children with difficulties was difficult to solve, and a problem of the state. But all my conversations have now confirmed my opinion that someone had to start, to break the mould, and fight against the isolation of children with special needs.'
Exchanging information about examples of good practice in the restructuring of mainstream schools in the UK and overseas is an essential step towards ending discrimination in education. In persisting with these efforts to secure a worldwide move from ordinary and 'special' education to inclusive education, we can press on towards the goal of making inclusion an everyday reality for all children and young people.

INCLUSION from University Of Western Ontario’s Centre for Inclusive Education
Dr. Jacqueline Specht

You learn to talk by talking
You learn to read by reading
You learn to write by writing
You learn to include by including
Bunch, 1999 p.9

What does inclusive education mean in Canadian society?

Prior to the 1970s, it was very rare to see children with exceptionalities educated in their home schools along with their siblings and neighbours. Typically, they were bussed to schools that had separate classrooms where children with special needs were grouped together for learning. In the 1970s, a movement began to bring children with special needs into the regular classrooms. These children may still have been bussed from other areas, but for certain times in the day, they were "mainstreamed". While the term mainstreaming seemed to imply that children were placed in the regular classroom, this was not really the case. Children with special needs were considered more like visitors to the class rather than full members of the classroom.

Why is inclusive education important?

Inclusion assumes that children with special needs are part of the regular stream and should be treated as such. Inclusion is based on Wolfensberger's principle of normalization (i.e., all persons regardless of ability should live and learn in environments as close to normal as possible). The basic idea behind normalization is that people with special needs should be viewed in the ways in which they are the same as other people rather than in the ways in which they are different. School can be seen as a microcosm of the larger society. As Canadian society has moved toward a more inclusive view of all individuals, so too have schools moved toward inclusion.

What are the controversies?

Inclusion is not without its controversies. As the movement has evolved, the distinction between regular education and special education has become blurred. More and more regular classroom teachers have been expected to program for the children with special needs. This has caused a lot of problems because many of the teachers have not been trained in special education. Even current teacher education programs do not provide a significant amount of instruction in special education. Another issue of concern relates to the education of the children without special needs. Some parents of these children feel that their children's education has been weakened due to inclusion. Research has shown that this is not the case. The educational attainment of children in classes where there are children with special needs is not significantly less than in classes without children with special needs. One may even argue that children in inclusive classrooms learn more as they begin to understand and accept diversity.


What are the characteristics of an inclusive school?

All children can succeed in an inclusive environment. Research tells us that effective inclusive schools have the following characteristics:

Supportive Environment

A school's culture and climate refer to the school's atmosphere, values, and policies. These lead to particular expectations and behaviors on the part of staff members and students. An effective school is one that has high expectations for its staff members and students, provides caring support for students and staff, and provides opportunities for their participation in the classroom and broader school setting. Feelings of acceptance are promoted by a welcoming school atmosphere and a school culture that accepts different kinds of behaviors in the classroom and does not make assumptions about children's abilities.

Positive Relationships

Teachers encourage the development of relationships through their decisions about where to seat children in the class. More formal actions include exposing children to role models and setting up buddy relationships. Many strategies can be used to promote the social inclusion of all children.

Feelings of Competence

Children need to believe that they are competent at something and that others believe that they can succeed. Children can develop a strong self-concept in many different areas. Children can feel competent in areas related to their social, athletic, moral, and creative abilities and qualities, as well as their ability to learn. By understanding their areas of strength, children come to value themselves and develop a strong sense of self-worth or self-esteem.

Opportunities to Participate

All children require opportunities to participate in activities that allow them to understand societal expectations. They can then acquire the physical and social competencies needed to function in their school, home, and larger community. As well, they gain an understanding of their strengths and their interrelationships with others. When children are valued, listened to, encouraged, understood, and believed in; they will be successful.

It's Not Always About What We Can Do For Autism, But What Autistic People Can Do For Us

"If you take him out of this school, you might as well take his life away from him." Line from the Movie "Radio."

Many of you might have already seen this inspirational movie with Cuba Gooding Jr. and Ed Harris, but I only recently saw it. It goes to show that sometimes, Hollywood does some good, and sends a message loud and clear to a wider audience: if we accept, so much can be accomplished. This movie is based on a true story.

If you haven't watched the movie, watch it. Here's the trailer you can view: CLICK HERE.

Adam with his autism, has given me more than I may ever give back in return.

Larry Bissonnette, Jonathan Lerman and the Profound Joy of Autism

I have rewritten this post from an earlier one.

abil•i•ty
1 a : the quality or state of being able; esp : physical, mental, or legal power to perform
b : competence in doing : SKILL
2 : natural aptitude or acquired proficiency
_
©1997, 1996 Zane Publishing, Inc. All rights reserved.

It is this notion of ability versus disability that has come to mind after meeting with Larry Bissonnette and Jonathan Lerman in Burlington, Vermont and then Vestal, New York. I visited Larry and Jonathan in order to curate their artwork for the exhibition and upcoming event in October: The Joy of Autism: Redefining Ability and Quality of Life.

I climb the narrow stairs of a barn-like structure housing other workshops. It is hot and sticky; the air is thick with dust. Larry watches me approach and I smile excitedly. He leans in to me with his forearm, and returns the smile -- his version of a handshake.

I am so happy to meet him in person, finally -- an admirer of his awesome insight and poetic way of describing things. After reading about a person for so long, they become a kind of celebrity – I feel so familiar in his presence, yet am a complete stranger to him. It is an invasion of sorts, being here, meeting him, looking through the hundreds of paintings so neatly organized in his studio. This is Larry’s private space, both his inner and outer worlds.

I am tentative and try to be delicate and gracious within his space. There is a cameraman with me. Larry, I’m told, likes to be on camera, but we are all quiet, introducing ourselves slowly, meeting his assistants, letting the minutes determine what is to be said, and how much.

Larry is standing near the door, drawing arcane lines with his finger through the air, like the conductor of an orchestra. “Baby blue door,” he interjects, as I wander around the room, pointing to the door next to him. “Baby blue door.”

“Does that have a meaning?” I ask Pascal Crevedi-Cheng, Larry’s Facilitated Communication assistant since 1992.

“They are repetitious phrases, a breakdown in communication. They don’t have any specific meaning,” he tells me. I think about the times when my own son Adam, now four, is scripting -- when he places a phrase into a space or a moment, how it can make sense even though it is repetitive, like he is enraptured with the sound and the melody of the words.

I ask Larry “What is happening for you when you loop your language – when you say Baby Blue Door, for instance. Does it have meaning for you?”

Larry looks at me, and I can tell he acknowledges every word, leaning in and listening closely. “Ah!” he says, and promptly begins to type on a portable laptop that Pascal pulls out for him. “Pale imitation of real feelings,” he writes.

At the studio, and after the introductions, I begin to feel comfortable enough to look through Larry’s work. He is watching me, arms folded, smiling. I ask him if it’s okay to look, even though this is what I came here to do. Craig, the cameraman turns the camera on, the dialogues at this first meeting among the artifacts of Larry, of autism, and this attempt to promote awareness about autism ability.

After two hours, I pick the work for the show, we grab lunch and return to the Howard Centre, a few miles away from Larry’s studio, where the interview continues. We are next to the University and Burlington still bustles with summer students. Larry is listening to us talk while we eat, and I ask him what his favorite food is.

“Macdonald’s cheese burgers,” he says, and I chuckle. He shines a big smile and Ryley, my assistant grabs two coupons for Macdonald’s burgers from her purse and hands them over. Larry reaches for them hastily.

“Do you have a girlfriend?” I ask him. Larry cowers and blushes. I joke around. “Ah!” I say. “I made you blush!”He grins.

The laptop computer comes out again, the camera is ready. Larry is using a computer program called Write Out Loud, which says the words and sentences he writes. Pascal's index finger and thumb squeezes his shoulder gently to remind Larry to keep his fingers moving along the keyboard. I have not yet asked him a question and he begins to type,“Least little force of my typing isn’t making sense. Estée ask me your awesome questions.” He is a gracious man.

I have seen many symbols in his work – houses, cars, and crosses. So I ask “What do cars mean for you?”

“Problem knowledge of goings on with interpreting images as symbols is Larry doesn’t paint ever vesting deliberate symbols. It’s all intuition.” I understand intuition.

It amazes me that popular science has purported so many myths about autism to the point that the public doesn’t believe that empathy, emotion, imagination and intuition are a major part of an autistic person’s life. Larry is one of the many autistic adults I’ve met and spoken with over the past two years of travelling who refute many of these ideas – “the shell of a person that is autistic.” We have learned that autism is very much a part of the person. We have learned, through the research of Dr. Laurent Mottron and Michelle Dawson from University of Montreal and Dr. Morton Ann Gernsbacher from University of Wisconsin-Madison, for instance, that there are cognitive abilities in autism that seem recondite but valuable, and using the metaphor of Camille Clark in a recent Autism Podcast, may be akin to "learning upside-down."

“How can you begin to know how to teach an autistic child unless you understand how we learn?” says Michelle to me in a lengthy telephone conversation. Her research with Dr. Mottron is helping us understand this. “It is untrue that autistics need to learn how to learn,” she laughs. “We learn!” I can see that of my son, how he acquires reading skills, among many things, on his own. It may not take the shape I’m used to, but I know he is learning.

“Whose to say that our senses are disintegrated?” she scoffs. This is the premise for sensory integration theories, but Michelle and Laurent both make the point that there is no disintegration, just a difference. I feel that Adam’s sensory system is so precise, attune and very intact if not overly astute to the point of intuitive. Michelle helps me think about how boxed in I feel with popular theories that have been interpreted as absolute truths about autism. She doesn’t say this to me, but what she does say is more congruous to my experiences with Adam than any one else’s words or theories of autism as a set of deficits and inabilities.

She suggests that there is a false-belief that once we know the cause of autism, we’ll understand everything. Instead of jumping from causation to behaviour as a means to supposedly "understanding autism," we are finally looking at cognition and abilities – one might say, the meat and potatoes of it all.

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.” I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

“What do you want people to know about you?” I ask.

“Larry loves McDonalds like people once they stop dieting and only when work that I spend my time on is seen as personally motivated and not derived from autism will I be satisfied.”

I tell him that people will be interested in his art for itself, and because of his autism. His art and the titles he ascribes to them, are inseparable. Larry is like a poet, revealing profound truth about his experiences in institutions and his views about life in a mere phrase.

“Yes,” he continues, knowing how people will view him, most likely, better than I.

Ralph Savarese, a professor of English at Grinnell College in Iowa and a father of an adopted autistic son, wrote to me about Larry’s language:

“There’s something profoundly relational (analogical) in the way that non-speaking people with autism communicate. Perhaps being forced to map the world visually encouraged an over-reliance on metonymy (or the principle of relational contiguity); whatever the case, their way of communicating and the ethics it implies (not individualism but community, connection) seems a lovely rejoinder to much that is sadly neuro-typical. In a footnote about Larry, I suggest that he seems to produce spontaneously the wonderful analogical dislocations of the great modernist poets.”

“What do you want parents to know about their autistic children?”

“I am in life until the total realization about the power of communication happens so parent occupied with over-coming problems of disability needs to focus on abilities that are not easily seen.”

So on the note of ability, I have to ask, “What is your greatest strength?”

“Am slacker by nature. Am the personification of practice makes perfect.”

Perfect. Indeed he is.

“You are a wonderful writer,” I tell him. He smiles. “Would you ever write a book?”

“Yes,” he says enthusiastically and begins to type, “not pictured in People magazine yet maybe publishing a book would put in on People’s reporter’s plain but cool list.”

Larry is tired. I’ve been with him for four hours, looking through work, talking on film which is being made into a video for The Autism Acceptance Project. He shakes his tired hand from typing – a long and deliberate task for him as he types slowly with one finger. And we have a plane to catch. Larry will come to Toronto in October and speak to others at the gallery on October 5th, which will be open to the public.

--

We fly to Vestal, New York. It is raining again like the last time I was here. This time, Jonathan will be with Alan, his father. I haven’t seen him since last December. They greet us and Jonathan looks as excited as he did when I picked them up for the opening of his exhibition at Lonsdale Gallery last year -- he is almost breathless.

I bring him a book from the gallery – illustrations by an artist – a book-long comic strip. Jonathan seems to enjoy it as he reads it in the car on the way to his studio – a building attached to a church which is owned by Joe, his art-teacher who has known Jonathan since he was seven years old. It is an old musty building and we are lead to the basement where a series of studios, including a clay one, are housed. Jonathan has his own studio way around the corner and at the end of the long narrow hall.

“I want to start a sculpture,” he declares. Joe was hoping he would draw or finish the one in front of him. Osama Bin Laden stares at us in the doorway. Jonathan’s room and the clay studio are filled with other political figures too. Today, he wants to do George Bush. Again, the camera sets up and he begins scultping. “There’s no such word as can’t,” he declares, molding Bush’s nose.

I enter the adjacent room flipping through hundreds of Jonathan’s incredible drawings. I pick drawings from Jonathan’s various stages of interest – people he knows, rock musicians, busy collages of faces -- while talking with Joe and Alan, intermittently.

“How often does Jonathan come here?” I ask Joe.

“He’s here almost every day.”

“No wonder the prolific work,” I comment.

Joe works with other students in his after-school arts program. He has been helping Jonathan for over ten years, making suggestions, exposing Jonathan to different mediums. I am impressed how Jonathan’s sculpture is becoming more sophisticated, and the speed at which he works.

“One day I finally got Jon to do a self-portrait in clay,” Joe says while I’m flipping through artwork. “He has done so many heads, and there hasn’t been a problem with any of them when they’ve been fired. But the day he does his own head, it blows up in the kiln.” I pause. We stare at each other at the apparent irony. “Isn’t that bizarre? Not one other head blows apart except for Jonathan’s.”

Later, I see that head proudly sitting on the window ledge of his drawing studio. It is not blown apart as much as it is fractured. The outer skull on the left side has fallen off but sits deliberately next to the remaining head. The inner clay is still round and clean, like looking through the skull to the brain-intact. It reminds me of not so much an incomplete or fractured brain as much as an invasion of one – man’s curiousity to find out what makes us tick.

It is getting late – nearly eight o’clock in the evening and we’ve been going non-stop since nine in the morning. We’ve been with Jon for about three hours. He is getting hungry and tired, the bright camera light becoming too much for him to bear. He is showing signs of agitation and begins to cry.

“I’m tired. I want to go home.” Alan goes in to soothe him. Jonathan wants to hug his father and there is a sweetness that surrounds them like a cocoon. We all watch in the crowded studio, feeling invasive, and this is not the first time I’ve witnessed the tenderness between them -- Alan is completely devoted to his son. Alan is a sad to see his son upset, his tall frame enveloping Jon, comforting him. I want to tie this up. I want Jonathan to be with his father and go eat.

While wrapping up, Joe goes to calm Jonathan while Alan takes photos of the works I’ve picked for exhibition. I show Joe the picture I’ve used in The Joy of Autism ads and ask him where the piece is. Nobody knows. There are still so many works still to be exhibited, catalogued. I think, Jonathan’s work is his artifact and must never be lost. To distract Jonathan for a few more minutes, Joe asks if he can replicate that drawing. Jonathan does. He is calmer.

We are back in the car, Alan’s Magellan is talking us back to the airport in the otherwise quiet SUV.

“What do you want to eat?” Alan asks Jon, trying to let him know that dinner is coming soon.

“Italian.” We are all salivating in the back at the talk of food. It’s been a long day and we too are hungry.

“I want Fettuccine Alfredo,” says Jon. I have noticed a remarkable increase in Jonathan’s language compared to a few months ago. Alan holds Jonathan’s hand to keep him relaxed. Jonathan is rocking his body a little, like he’s holding on to himself. It is clear that Alan is his steady source of calm.

“Jonathan has been talking of going to college,” Alan says, taking a deep breath, turning his head to talk to me a little more. I am thinking it’s entirely possible, if not probable. Jonathan is surrounded by the love of his parents, and after meeting Larry, will likely manage his anxiety at some point. Jonathan has a girlfriend, just went to his high-school prom in a limo.

We run out and say a quick goodbye; Jonathan shakes everyone’s hands and runs back to the car.

“Go feed him!” I laugh, and Alan runs after him.

I am delighted to see Jonathan, hoping that food and going home will ease his stress. I think of what Larry might have been like at Jonathan’s age, when his sister took him out of the instiution he talks sourly about today. I think of Barbara Moran, the autistic woman, age fifty-five from Topeka, Kansas, who wrote to me of how her sensitivity to noise has made it virtually impossible for her to be around people, and how she says that being on medications and being institutionalized made “her autism worse.” I think about ability, about the title The Joy of Autism, about sadness and struggle, but how every autistic person I’ve met and spoken with enjoys being as they are despite their challenges, which even to me some days, is difficult to comprehend. I think about the responsibility of talking about the provocative title The Joy of Autism amidst all of these challenges – how some parents might call their children a joy, but “not the autism.” Yet, every parent of an autistic child knows that our beautiful children demand from us a commitment to joy. Joy is struggle’s antithesis. We can not experience one without the other.

I hope that the positive messages from autistic people who face these many challenges, will reign. I think about how we define ability and how we must search for uniqueness, potential and dignity in every individual – how we must find our little ounces of joy in the many moments of our lives.

The Joy of Autism: Redefining Ability and Qualtiy of Life, October 5-November 5, 2006. A lecture series at the Miles Nadal Bloor JCC and concerts and exhibitions and presentations at Lonsdale Gallery, Toronto all by autistic people, parents and researchers in support of acceptance.

For more information contact www.taaproject.com
Or 416-487-3600
Click Here for VIDEO