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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, September 25, 2005

I am moving around now and hoping to take Adam to school this morning. So much happens when you're not looking. I need to really know how Adam is doing at school this week. I didn't even know that the language group he partakes in has one told me when I called the school this week, and the shadows didn't tell me either.

I will try my damndest to find a school that fits him. I don't want him in the public schools where they will funnel him into the special needs classes. I will be looking for integrated schools. As difficult as those curriculuae can be to organize, I believe in integration, philosophically.

My team of therapists is great, but I still have to stay on top of paperwork, Adam's programs. No one cares as much as I do, and I'm always trying to up the ante, to find a new way of doing things, or use the most effective way. It's a constant quest on what and how to teach. Sometimes, I wish I had someone who could expedite the management of the team.I am always trying to stay on top of everything at home and school, and I take a large part in what is important to teach. Everyone has a different style of teaching, and he is doing well by them. So this is the most important thing. Yet, with my pneumonia, I do notice that letting go a little makes me feel uneasy. Just being part of taking him to and from school let's me know how he's doing because I get to see and hear for myself. When I'm lying in bed, I don't get to see a thing and I don't have a real handle on how his week went. It all sounds good, and he seems well, so I'm sure he is fine.

This is the obsessive part of being a mom with an autistic child. Maybe some moms don't do as much or trust more people... so called "experts," but I don't. His life is in my hands. I don't believe anyone will care about him more than I will. Adam is engaged for almost the entire day. His down time is spent with me. As he's engaged with therapists, I come and go. Adam is such an active guy that if he wasn't engaged, he would have ended up in repetitive activities. This way, he learns and he is happier for it. He plays a lot and always wants to play with others.

I do notice his peers in the neighbourhood have surpassed him in play and verbal skills. They play together, group together...Adam tries to join in but can't keep up with all of them. It always appears as if he's a step behind. At school, there are enough varied kids, that he seems to do better there. There are other non verbal children as well as autistic ones. Some kids in Adam's neighbourhood group are quieter than others. I just hope he finds the crowd that he can interact with. Everyone has to find where they belong.

I can't say that I don't worry. Some days I do, but it depends on HOW I think. If I think of those other kids in the neighbourhood and the cafe klatches I'm missing because he can't keep up, I may feel down. If I think about how far he has come, that he actually does make some buddies at school, I feel fine. I can't expect him to be like everyone else overnight and there's a part of me that doesn't want him to be like everyone else. I do want him to feel socially competent, though. Enough to have a few friends.

He's three and a half. I don't have him toilet trained yet. It's another thing I have to work on when I'm better. I'm going to cancel all therapy and people in the house so that it's just Adam and I for a couple of days doing this. He's so good with me. And it's really something that should be done with mommy.

Saturday, September 24, 2005

I am able to move around more this morning and sit with Adam during breakfast while my mother and Henry help out around me. I'm so grateful for my mother being here.

So, Henry said our friend of ours suggested that we should look at the Montcrest School for him. I heard it's a good school. It is a school for children with learning disabilities but is integrated. I'm not sure how they teach or how they integrate yet, so that is a number one factor. It's not what the glossy marketing words suggest-- it all sounds good -- it's what they actually do and what their philosophy is.

Last week, I took Adam to a neighbourhood drama/music class hosted in a friend's house. This friend built a separate building attached to her home with a glass tunnel. The building is like a school house - amazing for kids -- so she hosts this class and invited Adam to attend. I said that he should have his shadow there (therapist), so she just told us to show up. I thought it would be lovely for him to be with his neighbourhood peers. Treasa, this crazy woman with skraggy, curly hair that was thicker at the crown than at the ends, striped Lululemon pants and bulging eyes. She spoke cacaphonously while rapidly moving from one activity to another. I didn't expect that Adam could take her shrill voice let alone pace. But he was so happy to be with his peers. He followed them and pretended to be an elephant -- I've never seen him try this before. So he was clearly gaining something from the experience. Yet at the end, she didn't want us to come back. Despite the fact that he was a doll, was not disruptive in any way and was the only kid who could name the Dreidel song, she didn't want him back because he had a shadow, and I expect, because he is special. She said she would try with him later, but as I considered it at the pressing of my friends to return, I decided that it is better for Adam to be around teachers who really believe in him.

I expressed my dissappointment to the host. I told her that I found Treasa horrible for doing this. And now I may have made ourselves the target in their eyes -- a sensitive mom and a her disabled child. It's a terrible stigma, but I have to get over it. First, I feel I have to pick the best teachers for Adam. Second, I feel I have to speak up for him, but I wonder at what cost? If I speak up do I run the risk of stigmatize him more? Do I make him the centre of a negative kind of attention? Or does he get treated differently than the others. And is that bad? Here is the area that is new to me and I try to navigate. Now our friends are suggesting special schools for him. Do they do so out of kindness? Do they do so because they think Adam is not capable? I think he is capable of anything. In fact, I know he is smarter than the other children in some areas, and maybe even overall, but he can't express it all in the same manner yet. I refer to a quote from another autistic child from Paula Kluth's book, You're Gonna Love This Kid:

"All my life I was enrolled in classes for the profoundly retarted. The pain of that isolation, I can't describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next day's project. I never spoke or made eye-contact. I hummed and self-stiumlated. No wonder they thought I was hopeless. I was always treated well but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in that same, hellish situation."

His area that needs work is the social area and that may come more and more once he feels confident about all the other areas of his life -- knowing how to play and being able to handle the materials. Also, learning how to pretend play -- symbollic thinking, is something we are working on now too. All this will lend itself to an easier time in the social arena. Eventually, it will happen for him.

So it is not a surprise that I isolate myself a little. People who try to help, really don't get it at all, even though I appreciate their kindness. And in their helping, they innocently and unknowingly, isolate me even more. How can people know autism if they are not living it? He is not mentally retarded, so he can't be treated like that. He is not socially functioning like his peers either, so he is at risk for being treated like he is not intelligent. As Paul Collins wrote in his novel, Not Even Wrong, "autism is as much an ability as a disability, it is as much of what is present as what is missing." I've memorized that quote. It's perfect.

Or my other loving friends often ask how Adam is like he's got a virus. It's like he's supposed to be better soon, like his autism will go away. In the heyday of the "cure" -- when all charities and diseases are raising money for that grail -- I understand why this is an everyday question. But he will always be autistic. He will always be different. But he will be different too, thank God. He will be unique, intelligent, and if nurtured, may be able to exhibit his intellectual gifts as his vocation.

Friday, September 23, 2005

By the way, the reason why I called this blog joyofautism is because I thought that no one else would put those words together (all the other titles I wanted were taken and I later found out that there are plenty of references to autism and the joy of having a child with it). Autism, which is part of who my son is, is a joy to me. He may not be a label inasmuch as those may treat him in a standardized and therefore, destructive way, but autism is part of who he is. He is as much an individual as any of us, but the autism also makes up part of how he moves within the world. He is wonderful to watch. His moves are nto random or behaviourally quirky if you look closely. They are strategic and orchestrated -- curious and innocent. Watching him helps me learn to see things in a different way. Watching him reminds me of how important focus and concentration are to become really good at something. His smiles, affection and abilities bring endless days of joy and I thank God for him every day.
It's been a week now that I've had pneumonia, so I have time to write this. It amazes me how much the building of our new house and taking care of Adam has really taken its toll. More the house than Adam. Adam is a passion. The house is lovely and at times, fun, but this and that needs to be finished, workers always need to be prodded. I am thinking that my life should become simpler, that going back to the friends who actually care about me is what matters. I've had so little time for making connections, having coffee with people who mean something to me. Instead it's always about the to-do lists -- a disease that inflicts most of us and I believe effect our children, espeically our children with autism. I am investigating now how autism is largely a social construct. Will talk more about this later on.

I saw a round table hosted by the Dalai Lama on the CBC with representatives from all religions, including Bishop Desmond Tutu. I didn't catch the whole program, but what struck me was their humanity, their humility. That's what I respect. I also respect those from all factions who can get together and talk only to find, that we are all pretty much the same.

I have converted to three religions in my life, and I've had enough religion to know that I'll never be religious. But I'll be inherently interested in the universal messages. For this reason, I am interested in philosophy.

I am sick and I haven't seen Henry much all week...Last night he went to the hockey game with his buddy in from Montreal who is helping shoot a film here -- I prodded Henry to get the footage of his 93 year-old grandmother -- the story of her life. I wanted to book the film crew for his birthday and I'm glad he is finally taking the time out of his schedule to document her stories and memories -- it will be so important in the years to come. One life is so rich and active and before we know it, as Joan Didion says, "you sit down to dinner and life as you know it ends." Every life deserves to be documented and remembered. So, my parents are helping Adam and I out while Henry is doing this.

In the meantime, I must simplify my life for me and for the sake of Adam. He is such a happy, delightful little boy and when I feel remotley down, I just think of his face. He is everything I live for. Life doesn't seem that full when it's all about acquiring things for the house, and organizing all day long. Life is more full when one is invested in things one is passionate about. Reading a good book, seeing a great play or movie, having a great hour with my son...all of those moments are infused with more meaning. Life is about experience. I've had so little of that.

Blog and Blaa sound much the same. This is what this sounds like, but hey, this ain't literature I'm writing here. If you want to read it, so be it. If it's crap, move on.

Wednesday, September 21, 2005

Still feeling terrible. Henry off early again and luckly my mother will help get Adam ready for school.

In his first week, Adam wasn't as social as he was at Yes I CAN!. But he was there for only two mornings a week and now he is at Play and Lean for five. He became very "social" at the other school, which was mainly comprised of girls, but interestingly, he began to lead another little autistic boy named M. M was non verbal and very disconnected, but when I watched him, had exceptional skills, like drawing. When I saw M I commented on how much I loved his drawing and I know he heard me. When I said it, his therapist, who shadowed him at the school jumped in and said, "yeah look at this....M, draw a triangle." Her tone was patronizing. Sure enough, M complied and drew the triangle and then went right back to his own drawing.

Was this an ABA therapist's version of success -- the imitation of the triangle? The fact that he could comply with her lame command? In my view, his success was his love of drawing and the fact that when I commented on it, he did it more. Isn't self-motivation and will the point? This is only one of my examples, and there will be more, of the failure of behavioural teaching with autism. M is smart enough to know he has to listen to his teacher. But his true abilities are being ignored by his behavioural therapists.

When M couldn't talk for himself, he began to take Adam's lead. Adam was quite adept at winning the affections of his teachers with his own affection. M would take Adam's hand and Adam would lead him. They sat beside each other. Willingly. Did they have some innate understanding of one another?

Researcher Simon Baron-Cohen lead the research on mind-blindness in autism. What this means is that it is difficult for autistic people to understand that other people possess different thoughts. Some autistic people take many years before they come to this realization. Often, his theories get over-simplifed and people say that autistics don't recognize emotion. But they do. They can recognize it in pictures, but they may not be able to read complex social cues in real time. In fact, Adam can seem to empathize and where researchers such as Baron-Cohen say autists cannot. If Adam sees another child crying, he will go to that child and play alongside him or give him something to play with. It's all non-verbal but communication can be without words. If Adam sees me crying, he doesn't come up to soothe me, but he seems to pick up on my emotions. If I am distressed, he may become distressed. I wonder if he feels I am distressed at him, or if he takes on my emotions as if I am an extension of him. But the empathy he has shared with his peers is distinctive from the mirroring of my emotions.

Perhaps some people might say that Adam isn't autistic. Adam was diagnosed with autism, by three doctors, at nineteen months of age. He wasn't engaged, he involved himself in repetitive behaviours, he couldn't engage in typical or pretend play and he was obsessed with letters, numbers and was hyperlexic by the age of eleven months. At three, he can read. Some diagnosed him with moderate autism and others higher functioning autism. At the end of the day, the nuances of diagnosis don't mean a thing. Autism gave me a frame of reference from which to learn about Adam, and now I find myself having to view him as a unique being, with a learning style that is all his own, that may share some universal qualities with other categorized neurological phenomenon like ADHD, giftedness, Aspergers and even Parkinson's disease.

I watched Oliver Sack's movie version of his book, Awakenings, last night again. The movie is marvelous-- suggesting the human behind the being, behind the catatonic bodies that otherwise appear unresponsive and lifeless. I see so many autistic children. I've attended a year of conferences and visited many schools. When Adam was diagnosed, I wanted to learn everything I could. I started with ABA, with agencies here in Toronto, behavioural analysts from the US (I would fly them in), and fired them all. I attended all of Gutstein's RDI seminars and even took Adam to his office in Houston. I tried and dumped all the diets that didn't work. Vitamins too. Adam's success began when I began to have faith in him and my decisions for him. The turning point for me was when I was about to fly in Dr. Jim Partington. The behavioural analyst I was using, J. P., kept insisting I bring him to see Adam. She used to come into my home with lists from the Hawaiian Development Profile to see what Adam should be doing and based his teaching on that. She viewed Adam as a pathology. Every behaviour went under a microscope and had to be "extinguished." But there was never ever empathy, any view that he was exceptional in some way and he was spoken to in such a contrived tone and presented with external reinforcements like he was an animal. So, when Dr. Partington said to me "we are only teaching your child how to respond," I held by breath and wondered, is it? I am not just teaching Adam how to respond. I am teaching him how to understand, how to do things, develop a sense of self, be able to understand his needs, desires, limitations and much more. Adam didn't need their approach. The turning point was RDI for us, but it still wasn't the end. Gutstein would have had me delay entering Adam into school and thank God I didn't listen because Adam craved social interaction, even if he didn't know how to interact. Gutstein would have had me keep him at home until he mastered Stage Three of his protocol. Yet, Adam learned with help, with RDI at home, and with exposure to school, with teaching him how to share, to play. If we followed RDI to a T, Adam wouldn't be where he is today, either. This was my mapped journey to understanding autism. I still wonder if any of these therapies are really necessary at all. I sometimes think that just good teaching and an understanding of the child and of autism, is essential to a person's success.

It was the combination of our intuition, the therapies that made sense, like RDI, Floortime, teaching skills to increase Adam's sense of competency and self-worth so that he felt confident in knowing HOW to play so that he could do so with his peers.

And so, Adam just went to school again today while I am stuck in bed. The process I have just described isn't easy. What I didn't understand and am also just learning is how long it takes for him. We parents want instant results. We want a CURE, a PILL, anything to bring our children back. I find the emotions complex. My husband said to me once, when I was arguing about semantics, "Isn't that what you're trying to do, Estee... aren't you trying to make Adam more like his peers?" I couldn't say yes or no. I couldn't imagine Adam any other way than what he is. I help him because he has to be taught like any child with a learning difference. I want him to understand, to communicate, to be able to play with his peers because he wants to. I want to give him the tools he needs so that he can do the things he wants to do. I can see he wants to. We are giving him the tools to put the steam behind his motives. The heartbreaking part for me is if he had the motivation but couldn't follow through, if he wanted friends, but didn't have them because he looked different or didn't know how to interact. If I fear anything, it is that.

I hope I am not a parent who is trying to change her child into someone I believe he should be. I am just trying to understand who he is, what he wants and hopefully, provide the teaching he needs so that he can do what he wants to do in life. It is not so simple to sit back and think this -- I struggle to understand the complexities of autism and the mind -- or to at least appreciate them. I am not a scientist, but I try to read a lot of their work.

I found a wonderful book, by the way. I don't recommend a lot of books unless I find one that really sums up a lot of works in a useful way. Henry actually found it: "You're Going to Love This Kid:" Teaching Students with Autism in the Classroom by Paula Kluth. Good for parents and for teachers.

Tuesday, September 20, 2005

Funny. I'm struck down with pneumonia and I finally open the blog I've been thinking of for a while. I am a mother of a three year old boy with autism. His name is Adam. Since nineteen months, he has worked with therapists to help him play, communicate, socialize, understand how to do things that the rest of us found easier at his age. What I've come to realize over the past year and a bit is that Adam is not the aberration that the behavioural analysts used to try and make me believe (and boy they tried hard), but a wonderous addition to the world around him.

Okay, you might think only a starry-eyed mother could say that. I figure, from the many down-and-out moms I meet who also have children with autism, I need to speak like that because simply, I believe it. In fact, I find it really depressing looking at the other blogs out there on autism -- parents who believe their children are broken in some way. Words are permeating our consciousness and shaping our behaviour -- words like disabled, disorder, cure and epidemic -- words that as a parent, I have found at first scarry and later, scandalous and unjust to the thousands of people who are autistic.

I surely have had confrontations with teachers who know nothing about autism, mother's in school hallways who ask "is your kid normal, or is he special needs?" We have always had a need in society to discriminate, at the peril of hurting others. As Adam's mother, it's my job to be his advocate. First, I must talk about that word N-O-R-M-A-L. A strange word. I hear people use it in so many contexts, and it seems to haunt us --a lingering apparation in our minds that keeps us from doing many things for fear we may not appear normal. The word is strange and ineffable because there is no "normal." There is only difference. Yet we spend most of our lives anguishing to be like others.

Luckily, there are more teachers that are realizing the unique learning styles of many children, including those with autism. Not everyone is as unaware as those mothers in the hallway who believe they are harmless.

I'm stuck in my bed and I hear my little boy call my name "mum, mum, mum," the m's melding into one another. He wants to see me. He comes now with a big smile on his face, climbing up the bed. I pause. He wants to be on my body but I feel like I'm about to vomit. It pains me to ask my mother to pull him off. I ask him to be gentle, this little happy cherub, the simple happiness of being around mommy.