With Tidings of Struggles and Joy

Filed Under (ABA, Acceptance, Activism, Communication, Community, Critical Disability Studies, Discrimination, Human Rights, Inclusion, Joy) by Estee on 29-12-2014

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This is a short post to wish all of you a happy holiday and New Year. Adam and I have had such a wonderful year – his wish now to write a book and all that progress with his typing. Finally out of the clutches of autism schools that haven’t realized Adam’s abilities, Adam is now doing his grade seven curriculum. Thanks to everyone who has supported us this year! It has been a joy for all of Adam’s family and closest support staff to witness Adam’s happiness and self-esteem that is noticeably changed since he talks more with friends and family by typing.

That said, despite proof, I am dismayed with “autism programs” here in Canada and the lack of activism we engage in as families. Compliance and normality still propel autism programs here, and rape a family’s emotional and financial well-being with the empty promise of recovery, cure and a semblance of “normality.” I ache for families and more so for autistic children – many forced behind closed doors for hours a day in “therapy.” This is no quality of life, no joy. This is child-abuse and unless we begin to identify the violence of these programs, little will change. When I think of a New Year, I spend most of my time thinking about the work that needs to get done. I think about what my obligation is as Adam’s parent and it’s not about therapy.

It is our obligation as parents to understand the autistic community that is comprised of other autistic people. We are much more obliged to read and try to understand the experiences of autistic people for the positive development and growth of our children. The autism agenda (that is research and policy) is set by non-autistic people who are telling parents that is their obligation to do everything and anything to cure their autistic child – this spans from starving them from certain foods so they appear less autistic to forcing normalizing therapies. Even if in a situation (because true inclusion and acceptance is far from achieved in our country) where there seems to be little choice at but to put a child in an autism school (typically with ABA therapy), a parent must do everything to find a learning and social situation that supports difference (and I realize that using that term risks totalizing) without the propensity and impulse to normalize. Sure, these are loaded sentences that I’ve spent since 2004 working through (you can read them in the blog), but they need to be because the situation is not as black and white as most media outlets (I need to write that letter to the CBC!) and research outfits will have you believe.

As a parent, I also have to pick my battles because there are so many to be had every single day. It is the reason why we can’t write about every injustice everyday here on this blog (although I think about it). Instead, I am working with Adam and his team on delightful things – his words, his thoughts, and yes, his pain that he cites within a society that doesn’t accept him. Even though that incites me, Adam is so full of love and acceptance for that very world in which he wants to belong. I’d like to think that maybe I’ve had a bit to do with that. Exposing Adam to autism conferences where most autistic people go (as opposed to the ones where researchers and parents go), has changed Adam in profound ways. I consider these to be in part, my parental obligation to him.

But speaking of battles, at the moment, I’m challenging a ski program here in Ontario that seems to be practicing a qualified inclusion. Qualified inclusion means that an autistic person needs to be independent before the right to participate. I’m trying to explain to these folks the meaning of what I call for now, “enabled participation.” This suggests that many folks require their own chosen support staff (chosen and employed by the autistic person) in order to participate in ways also chosen by them. This process takes time. Consent and choice is a multi-faceted process – not necessarily a yes or no answer. When someone is challenged with verbal communication, they require many opportunities to respond to how they want to live their lives. They require people who believe in them and who know how to support their movements and communication.

When I mentioned to this ski program that excluding autistic people from autism programs is discrimination because it is qualified on the concept of normality, I received an email that Adam would be accepted on the ski hill. Since then, however, I’ve received an email that Adam will “be assessed.” At the moment, those criteria for assessment remain invisible to me; they have not disclosed their terms and I may only assume that independence is top of their list, even though they have accepted him with his assistant on the hill. Such assessments need to be fully transparent. When they are, we have the right to critique them (because we know that all assessments are based on discrimination and bias – that only verbal, normalized ways of participation and response are acceptable). I am not only a parent, but a scholar in this field being talked down to and to some extent, manipulated. One would think that many-a-program, to avoid human rights complaints in the future, would tap my knowledge of policy and law and how to better “the autism program.” Autistic folks and some folks working in Critical Disability Studies are able to provide this input for policy-making and this needs to be harnessed. But…

This is the struggle that we all face as parents and we have to understand that the rules are set by non-autistic people that want to make systems that befit them, not the autistic person. Remediation, cure, recovery, normality, independence – these are NOT criteria for inclusion. This is not substantive equality in the legal sense. Substantive equality enables the disabled person in their disability to participate as they are. So, I’ve targeted a battle, a struggle. It is a frustrating process to trouble such organizational policies, but this is are real job as parents. Don’t buy into the rubbish that autistic people are trouble and the “problem” of autism must be eradicated. That’s a backwards way to look at the issue. Instead, as parents who have long-supported damaging policies and educational/therapeutic models that autistic people have long been critiquing (as they have been hurt by them), it is time we turn our minds and our hearts to supporting our children, no matter what age, to change the rules that have long excluded them.

To that, I want to end by reiterating Adam’s Christmas wish that he typed on Christmas eve: “I wish for love and open hearts.”

One must also believe that open hearts may open doors too. Wishing EVERYONE some joy admist these continued struggles.

This is Our Halloween

Filed Under (Acceptance, Accessibility, Adam, Autistic Self Advocacy, Communication, Development, Family, Holidays, Joy, The Joy Of Autism) by Estee on 31-10-2014

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We got up a little earlier today to rush to get Adam’s makeup on for Halloween here in Toronto. Adam decided to be a happy bear, so we came up with Happy Panda – it’s also a story about mindfulness that we sometimes read. It just feels right to show a happy little autistic guy, a preteen no less, who types to talk and gets excited like every other kid about Halloween. Adam is part of the whole process in deciding what he wants to be. Since Adam started typing at the age of 4, and is now 12, he has become more able to self-advocate and tell us a lot of what it is like to be Adam.

Here he is (below) inspecting my make up job… I must admit I wasn’t sure if he liked it when it was all done… and I didn’t have time to discuss it with him as we were rushing out the door. But he seems to be thinking about it here:

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Alas, in this next shot, Adam is a Happy Panda posing for the camera. Today at his (inclusive) school he will go trick and treating around to each classroom. It’s raining in Toronto, so it is unlikely he will go out tonight with his dad… I’ll miss Halloween with Adam this year. It’s the first year ever I’ll miss it with him.

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I hope all autistic families will enjoy their Halloweens if they want to. I never believe in forcing our kids to do things that are expected, but at the same time, I also believe in inclusion and participation in ways that the kids can and want to participate. I always tried not to expect too much when Adam was little. We stayed in one Halloween when he preferred to hand out candies rather than going door-to-door. That remains a really fond memory because Adam chose to do this and he enjoyed it so much. Before he could self-advocate with words, I gave Adam an array of choices, making costumes that reflected his interests. Since Adam was deemed hyperlexic and loved numbers and letters, I stitched letters and numbers to his clothes and named him “Alphabet Boy” – indeed my kind of superhero. This year, it helps a lot in all activities to make up our own social stories so that Adam knows what is expected, and I have him participate in writing them by making choices before decisions are made. This can involve all the steps that are made from ringing a door bell to what to say, to how many doors Adam can knock on so he feels a little more secure about how the evening is constructed. It’s also part of why I like the process of making Halloween costumes (although I’m not that talented at it, I still enjoy it) because it gets him involved and a chance to anticipate and be a part of any given event.

Two years ago, he wanted to be a ghost, and we managed to make together a Tim Burtonesque version… he loved that one; in fact I think he’s channeling Tim Burton again this year! Here’s a photo of that costume:

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And another year, he fell in love with a cowboy costume from the store – he wore that one two years in a row:

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It’s been a joy to watch Adam grow and develop over the years. Having an autistic child is wonderful to me, the challenges included as they have encouraged me to think outside of the box. Let’s all make our Halloweens what we want or need them to be, and find our contentment with that!

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2014

Filed Under (Academia, Acceptance, Anxiety, Behaviours, Communication, Community, Critical Disability Studies, Inclusion, Inspiration, Intelligence, Joy, Language, school) by Estee on 18-12-2013

There are days when I feel so grateful for the support Adam and I receive from the team, friends and family. My university is so supportive of our needs as well, allowing me a leave so I can lesson-plan for Adam and train him more in language and typing. With support since he was around five years old, Adam is now somewhat independent when conversations are not that open-ended and unclear. I can hand him a keyboard anytime and he can type his feelings or what he needs sometimes faster than he can speak the words. I also learned that animating words makes them meaningful and is better than rote vocabulary instruction.

Adam, as a hyperlexic individual since we could hear him speak at 11 months of age, loves letters and words. I am going to work with my son’s strengths. In so doing, I am training others in the process. Others watch how I do this with Adam and also learn to do it with him. I have no formal training other than personal study and my PhD work which focuses on semiotics and language and disability. This is my passion because of my son.

Adam is heading into puberty and has issues with anxiety, but seems most frustrated at not being able to say what he wants to say. When he gets the words out, he says them forcefully, looking into my eyes and saying the phrases again and again until I say it back. He knows I’ve understood him. I think it’s the way he’s been treated all of his life by us jabberers (dominant ordinary language users) in that we tend to repeat ourselves to autistic people who have trouble with ordinary language because we think they don’t understand us. Adam is doing what we have been doing to him. When I say the words back, echo him, he is satisfied that his message is understood. Phrases like, “I can’t wait anymore!” can be met by me with an acknowledgement and a timer which settles his need to know how much longer he must wait for his desired activity or item.

Also, operation calm down has worked. Adam is happier, the screaming tics abated. Following the stress and episode, Adam always emerges with more sentences (communication). I’ve yet to hear anything from the neurologists on it, but we keep trying just in case. This is not to “cure” the autism as much as it is to ensure that Adam’s health is attended to well; that we are not missing something. The health of the autistic person must be attended to as much as the non-disabled person. (Another topic about how to regard the autistic person might be better sought from autistic people themselves).

It was as if Adam was saying “please listen to me!” and we have. Some of it was because he didn’t enjoy a transition and the team and I will be working on this all year. That said, Adam is fairly flexible all things considered. We haul him on our travels, and I plan on taking him on many no matter what. I believe in respecting his difference and limitations while also helping him through without pushing too hard some days and knowing when to push because those days are so apparent. He loves to be with other people and to see new things. He loves being out in the world and engaged. It’s in the manner we engage him that is important to expand his horizons. I want to thank my university for supporting us in making this the best year for Adam and I. Without the understanding of schools and universities, we might never be able to do this important work that does effect so many people with disabilities in that not every year can be a consistent, machine-like operation. Sometimes we need to step back and focus on our children, or our own disabilities. I am overwhelmed by my school’s support. Thank you York University! I look forward to sharing my copious notes and experiences from the journey this year.

As for Adam this year, my mantra has nothing to do with compliance. It is about cooperation, engagement, respect, “muchness,” connection and yes, joy. Adam’s learning can’t happen without these principles.

Back to School 2013

Filed Under (Acceptance, Adam, Communication, Identity, Joy, Love, school) by Estee on 03-09-2013

It was back-to-school day. Adam started his new inclusive school today. It was not unfamiliar; he had been there two years ago. He had a great day and was typing very well. Adam was happy when I picked him up and was apparently glad to be back with the big kids at lunch and recess. In the meantime, I’m up to planning the rest of his programs, and my own. I am due to defend my thesis this Thursday and if all goes well, will start my doctorate and teaching assignment next week.

As I opened Adam’s bag this evening I got a new kind of homework that I was most delighted to find – I was asked to tell the teacher about Adam. I was asked to write in a circle about what Adam likes to do as well as answer questions such as: Who is he? What does he mean to you? What are the things about him that I should know? I was just thinking again the other day how, just because are kids have this label we name autism, that our children inherit an identity that does not belong to them. I mean, how often are we asked to talk about our children in positive ways (for lack of a better word)? Aren’t we typically asked by therapists what our kids like for the sake of using them as reinforcement as opposed to knowing who our children are? And what about knowing our children as people first? In thinking about the year ahead, I’ve spent much time over the summer pondering all the things that Adam is, what he loves, what he is good at, and what he brings to his family and to the world. Then surprise! I got this “homework” in his backpack today. Needless to say, all that thinking about what Adam is, as opposed to what he isn’t, helped me to fill the circle quickly. I’m so glad someone else sees the value of this too.

Blehhhhh!!

Filed Under (Joy) by Estee on 06-08-2013

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I’m just posting this photo because I love it. That’s it. Here’s Adam with his assistant and counsellor, obviously having some fun.

Okay, I’ll get political too…what opportunities that some kids could have if human support workers were part of the mosaic of supports that many people need in order to participate in society. Instead, Canadian governments and most autism charities will send our kids to ABA camps. I know… at least it’s something, but in the end, it’s still segregation. In the end, the goal is to make one like others, to normalize, and as a disability cannot be normalized, think of what we’re doing to autistic folks. Let’s lobby for the right to be autistic and the right to have the supports that people need, including other people!

That Loving, Fellowship Feeling

Filed Under (Adam, Family, Friendship, Inclusion, Joy, Living, school, Single Parenthood) by Estee on 05-08-2013

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Adam and Nolan lunch

This is Adam’s best friend. Aside from going back to camp this summer, which he is able to do with an assistant, this is the friend who Adam spends time with. We recognized it was a real, unscripted friendship when the two of them preferred to play without words, to roll around on the floor, or when Adam would lead his friend around the house to show him things. His friend is verbal and not autistic and seems to understand and have compassion for Adam, and I believe the feeling is mutual for Adam towards his friend.

There have been lots of events this past week, most importantly the decision to send him back to the school he attended two years ago, which is not an autism school, but a school for all kinds of wonderful kids. Adam had good friendships there; we could make adaptations in the way work was presented; he could show off his skills and he especially enjoyed the mentoring program when the older kids would teach him. There, he made lasting friendships that have stood the test of time – the same friends attend his camp, and they enjoy each other’s company. His typing stories is getting stronger this summer with our daily practice, and helping Adam with schedules and learning to be patient with me (I’m a single mom… I need his patience) is another important lesson he’s learning with success. Let’s just say, I’ve made these things my mission and I find when I attend to them carefully, we generally do well.

Here’s an example: Every weekend, he wants so badly to go to his grandparent’s house. There, he is soothed and served by my mother. My father gives him strong hugs and takes him on his long walks and subway rides. How could he not love the attention and understanding he receives there? (In fact, he loves them so much, I’m going to ask the TTC if they will take us on a special learning tour). If I don’t take him and I don’t have a plan, he had been getting quite distraught with me. I decided to let it be. I broke part of my foot on Friday and couldn’t do everything he asked. This prompted a teaching moment.

“Grandma’s house,” he demanded on Saturday, looking at me with determination in his eyes. I was a bit nervous he would bite his wrist if he got angry with me; he wears a chewy tube or heart around his neck so if he’s inclined to do so, he will choose that now instead.

“We can’t go today. We’ll go tomorrow,” I said, thinking whoops – that’s an abstract concept and I’m not sure if tomorrow could wait. What is tomorrow when we want it now? I tried making a calendar, and since he can read – I simply wrote in the plan for the days. We went through Saturday, then Sunday…

“Grandma’s house,” he said again emphatically.

“Not today. First we will eat lunch, then we will go for a drive,” I declared, thinking of my foot. Adam got out of the chair, he was sitting in, and I wondered what he was going to do next. Then, he walked towards the rotary phone I bought – to gain his interest in making telephone calls, since he seemed averse to talking on the phone. He picked up the receiver and began dialing. I quickly held up grandma and grandpa’s phone-number, just to make sure we weren’t calling Australia. He put his finger in each hole and dialed each number carefully. He began speaking into the phone, without my assistance.

“Hi,” he said quietly.

“Adam, may I listen?” I asked, knowing that my folks weren’t likely to be home. Sure enough it was the answering machine. “Okay, they’re not home,” I said to Adam. “Let’s call grandpa’s cell phone.” I held up the number for him to follow again and dial.

“Hello” he said into the receiver. Again, I did not know what was being said to Adam, or if anyone was even there. “I’m fine,” he said again. “I love you….can… I… go…to…your…house?” he asked softly, speaking each word deliberately.

“Adam,” I interjected. “May I please speak to grandpa?” I took the phone from Adam to ask my parents where they were and indeed, they were not going to be home. I asked if they would please tell Adam themselves (they were in the car on speaker phone).

“Tomorrow” I heard Adam say softly and he began to whine. “Bye.”

I was elated that Adam made his first phone call by himself. After that, we were able to follow through with the day without a hitch. I asked him if he wanted to go for ice cream, it went so well.

“What flavour do you want…raspberry?” I asked.

“No.”

“Lemon?”

“No.”

“How about chocolate?”

“No.” In fact, if you’ve ever watched Gumby,you might recall Mr.Nopey, from which Adam has earned one of his many nicknames; you’ll just about get the right intonation and speed of Adam’s replies.

I waited for a bit. Then Adam declared…”White!” I realized that someone told me he had tried lemon once and really liked it.

“I think white is lemon, Adam,” I said.

We drove to the frozen yoghurt shop and indeed, he loved lemon.

So today, with my broken foot, I sent Adam along with his friend to Canada’s Wonderland where they shared rides and won a couple of prizes. I’ve been thinking of the typing, the relationship we share when we do it together, preparing Adam the way he needs to be prepared, and Adam’s strong desire to connect. I think when I spend more time with Adam typing and sharing, and when he can spend more time in sincere relationships that aren’t always highly verbal and difficult for him, he is a happier kid. Then, as I finished my Master’s Research Paper (more or less) today, I was thinking of Larry’s line in the movie Wretches and Jabberer’s when he speaks to Tracy about their trip to Japan and Sri Lanka, and they’re in dialogue about how nice it was that they traveled together: “Larry loops twice on that loving fellowship feeling.” Indeed, there is something about the summer that triggers these feelings -perhaps it’s simply more time – and I’ve learned how important these feelings are…all year long.

“We Are A Critical Mass of Wretches” – Larry Bissonnette

Filed Under (Acceptance, Adam, Communication, Computing/iPad, Development, Inspiration, Joy, Uncategorized, Writing) by Estee on 16-07-2013

I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.

One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.

Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.

Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:

“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”

A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”

Thank you my little one. I am your devoted wretch-in-arms.

How I Deal

Filed Under (Ableism, Acceptance, Anxiety, autism, Estee, Joy, NEugenics, Parenting, The Joy Of Autism) by Estee on 10-06-2013

So I’ve just put Adam to bed. We’ve had another challenging month – a major basement flood ruined his space where he jumps on a trampoline and has his OT equipment. It’s his space where he is king. It’s our second flood, but this one was much worse…expensive damage and more importantly, it had to be totally ripped apart. The same week, Adam suffered the viral croup that’s been going around up here. Unable to move for a week, he hardly ate and broke out into frequent sweats. Unable to explain the way he feels in detail, or to have the energy to “type it out” as I say, I panicked and took him to the doctor three times to make sure he was going to be okay. In the middle of it all, my walls were being ripped out and fans and humidifiers hummed so loudly that it was difficult to feel at home let alone relax.

Then, Adam returned to school on Monday and started biting his wrists and arms. It hasn’t abated yet – he’s frustrated when his preferred activities are ending, he’s starting puberty and my great little guy is on the anxious side to begin with. He has all the difficulties with transition and arousal as expressed by other autistic adults. It’s very difficult to write about Adam in this way, but these challenges are inevitable in life. My mother confided in me that she used to bite her friends (she won’t mind me writing about it now) because she was frustrated and angry. I expect Adam is a bit frustrated and angry too – his ripped up space, his sickness that has kept him immobile and now having to return to demands not to mention the need to express the free will of becoming an older boy. The way I deal (despite my own stress) is to bring back routine, use visual supports, gestures, counting, less words, gentle affect. In the midst of chaos, this is one thing I know to do. I also have a routine, it seems, when I’m overloaded. I get stressed out and then realize its time to shut everything down, off and focus on calm and Adam. Then, as I do, continue to support Adam’s development and learning to cope with new experiences and on patience with the things that don’t work out as planned.

I had two other thoughts this evening when I considered writing about challenges, which I am wary of doing for all the twists and turns I see stories take for some people’s own self-interest. First, I recommend everyone to read Val William’s book, Disability and Discourse: Analysing Inclusive Conversation with People with Intellectual Disabilities. Using a conversational analysis between disabled and non-disabled support workers, she analyses the subtleties of our conversations, intonations and expectations against our desire to support autonomy and how we may in fact silence and disable it, as well as examples of how it can be enabled in people with severe communication disabilities, which is my area of special interest. I was considering how I might disempower Adam’s free will and autonomy by analysing my own behaviour as his parent in how I talk to him, what my expectations are, how I may garner an answer from him. I asked myself if I praise him because he has answered in a way I expected, or made a choice I preferred. Then I asked myself (and am more aware of this now he is entering puberty) how often do I praise the choices he makes that I might dislike or are inconvenient for me? How can I encourage and support his autonomy if I only praise what I think is acceptable? These are the reflexive questions and sometimes, fine lines.

Then, I came across two recent books that mention my name and work. The first is by Michael Prince and Bruce Doern, Three Bio Realms: Biotechnology and the Governance of Food, Health and Life in Canada. I have quoted Prince especially from his book Absent Citizens: Disability Politics and Policy in Canada. In Three Bio Realms he states:

“Bio-life technologies are especially susceptible to both the ‘wow’ and the ‘woah’ reactions and instincts. In this case, the ‘wow’ factor came in the announcement itself and press coverage of it. An immediate letter to the editor of The Globe and Mail newspaper expressed the ‘woah’ reaction in intensely human ways. The letter came from Estee Klar, who signed her letter as the founder of the Autism Acceptance Project (Klar, 2010). Her letter expressed the views of the mother of an autistic child reacting to the announcement about genetics and autism. She wrote ‘the lack of public awareness about autistic pride and the many autistic adults who have helped our understanding of what it means to be ‘different.’ She expressed deep concern about language that might cast persons with autism as having fouled-up genes. Klar concluded by stating that autistic people ‘are more than their genes’ and that like non-autistic people, are shaped by [their] environment, supportive families, good education and so forth. (Klar, 2010 in Doern and Prince, 2013, 198).”

I was surprised to see this disability scholar refer to autism as a “disease” because the reality is, there is no known etiology of autism. While there are other issues that confront many different individuals with the label, the term itself is too broad and deterministic regarding autistic being and identity. I also think it prudent to cite the woah factor in a society that searches for a panacea – from pills to technology to gene-causation – in the pursuit of a (perfect) ability that I think will still experience or may create new disabilities. The way we parse humans as (dis)abled repeats self-evident ableism.

And then I came across this book Bad Animals by Joel Yanofsky who says,

“I’m recounting the highlights of a telelphone interview I just had with Estee Klar. She’s a Toronto writer and curator I learned about when I read her heartfelt essay ‘The Perfect Child.’ It’s about her son Adam whose on the spectrum. Not long after Adam was diagnosed, she started TAAP or The Autism Acceptance Project. TAAP’s mission is ‘to bring about a different and positive view about autism to the public in order to raise tolerance and acceptance in the community.’ She also started blogging about her life and about autism, which she says on her website, is not about illness but a way of being. Even so, Klar is hardly starry-eyed. She knows first hand how tough dealing with autism is. She also knows that if she were to accept all the doom and gloom heaped on her over the years she’d be incapable of doing anything, including what she believes is best for her son. Currently, Klar’s blog reaches some two hundred and fifty thousand readers.”

I do think that many of us need to write-it-out, visit meet-up groups, talk it out, type-it-out despite some days I think I should just delete everything and walk away. For myself, I’m not a great writer but I just keep doing it. I have a compulsion and I guess it is a way I can deal, and if it helps you too to read it, then I’m glad for that. I am grateful that Yanofsky in that at least he highlighted that I am hardly “starry-eyed.” I guess despite the fact I can get very down just like anyone else, I am also determined to see that sun rise and know there are always many delightful days, and I don’t believe in simple answers and a final cure. I don’t believe in easy paths and the “pursuit of happiness” – when we think it is something to obtain and possess, it simply makes us more miserable. It’s like expectation – when we hold on to it, we will be disappointed. We can’t hang on to anything (obviously not a soothing statement for people who need regularity and routine). So why am I thinking about these two quotes about the way I think about autism and my life tonight? Well, if anything is final, my concern is the finality of the existence of people we deem not worthy to live because they do not fit an economic paradigm and who are considered burdens on society. The thrust of my work today deals with this and how we can support autistic people, and to reconsider how we view autonomy and independence as yet another path to normality (and oppression). Normal doesn’t exist and it never will for many of us, and for most, it is a mere delusion. Hmmm…delusion. A way to survive the ultimate reality? Think about it.

Happy New Year

Filed Under (Joy) by Estee on 07-01-2013

I wrote earlier that I just returned from Oaxaca, Mexico. Adam wasn’t with me this year. His dad and I take him on holiday every-other year… the “schedule” as I’ve come to think of it.

I got a new ukelele for Festivus from my musical beau (we literally play music together). When I picked up Adam from school today, we were reunited since he went with his father in late December. I was so excited to see him, my stomach in knots. I couldn’t contain myself, smothering his soft face with kisses that he tolerated for a while. As we drove home, a huge smile came over his face. We returned home, made dinner, played downstairs – back to the regular routine. I pulled out my new uke and played a new tune I’m learning and Adam danced for me. I can’t wait for bedtime – a book, a snuggle, a “hunker down beneath the covers,” and more smothering kisses goodnight. They don’t call it (s)Mother for nothing.

I hope this makes you smile. Happy New Year to you all!

The Adam Family

Filed Under (Ableism, Autism and Employment, Autism and Learning, Communication, Critical Disability Studies, Family, Inclusion, Inspiration, Joy) by Estee on 10-09-2012

We are The Adam Family. As we grow into our lives with autism, it becomes increasingly difficult to see the “normal” world as the actual opposite of what it purports to be by that label. The more on the margins of society we seem sit, the more absurd “the rules” seem to be. In thinking more about Inclusion and The Canadian Charter of Rights and Freedoms, I realized that the idea of Adam having his own family, therefore, is not a sight-out-of-reach. It is a possibility, his choice, and right which must be enabled and protected. How, on earth, if you are a new parent to an autistic child, particularly one like mine who has limited verbal ability, could this be possible? Well, it may seem a bit quirky, and some would be up-in-arms against us citing us as a future social welfare burden, but first let share this take on The Addam’s Family series:

Much of the humor derives from their culture clash with the rest of the world. They invariably treat normal visitors with great warmth and courtesy, even though their guests often have evil intentions. They are puzzled by the horrified reactions to their (to them) good-natured and normal behavior since they are under the impression that their tastes are shared by most of society. Accordingly they view “conventional” tastes with generally tolerant suspicion. For example, Fester once cites a neighboring family’s meticulously maintained petunia patches as evidence that they are “nothing but riff-raff.” A recurring theme in the epilogue of many episodes was the Addamses getting an update on the most recent visitor to their home, either via something in the newspaper or a phone call. Invariably, as a result of their visit to the Addamses, the visitor would be institutionalized, change professions, move out of the country, or have some other negative life-changing event. The Addamses would always misinterpret the update and see it as good news for that most recent visitor.

(Wikipedia)

I wish we could all live with the same conviction. When parents get frightened about autism, it’s usually because of fear for the future – will my child get married, go to school, have friends? The pressure to conform the unconformable is immense. For many years I quietly shared the same worries, although I feel my worries were more rooted in society’s acceptance of Adam. My viewpoint is shared with the more widespread social model of disability — that our modern definition of disabled is a term to describe the social barriers that make a life living with an impairment exclusive/segregated. There are naturally going to be times in the beginning of having an autism diagnosis, most-likely if we’ve never experienced disability before, that we will be thinking in terms of our own lives, how we grew up, went to school, made friends, had our first boy/girlfriends and later, maybe even got married and had families of our own. When we don’t see our children doing the same things in typical ways, we worry for them and maybe even for ourselves. The life trajectory is one that our society uses to plan every stage of our lives from how we go to school, to what we are supposed to become, to building our retirement nest-egg.

We expect to be on a path that is economically driven. We are raised to comply, to be a part of society. About a century ago, the formation of “school” was intended to prepare children for later entrance to the military. Today, we plan for our babies at the get-go with pre-school and envision them at Harvard – the ultimate preparation for a new kind of regime. We prepare our little ones for the economic march into consumerist culture. Our frame of reference for understanding is capitalist. Erich Fromm believed that we tend to categorize individuals “according to various types of status, to glorify superiors, and to look down on those who are regarded as of lower rank (e.g. persons belonging to other ‘races’) – must be understood in light of an authoritarian upbringing, which in turn is associated with other general authoritarian tendencies in the workplace and society in general.” (Alvesson and Sköldberg). That “authority” well, to coin James Carville, is “the economy, stupid.” (I’m using Carville’s words and am not implying anyone is stupid. I want to acknowledge the sensitivity I actually have when people use words that can be used violently). While resources are an issue for supporting autistic individuals, others site Libreralism as a issue as it put great stake in “liberty, automony and choice… Given the reality that some persons with disabilities will necessarily be in situations of intense dependency and reliance, can liberty and autonomy — with their emphasis on freedom from — really be the lodestars liberalism has assumed?” (Devlin and Pothier).

When we bring an autistic child into the world, we don’t fit the model pretty much from day one and especially after our children receive their first official diagnosis. We try to squeeze into charitable models for definitions of our existence, but they feel uncomfortable, placing us in (again) subordinate positions yielding to the “power” of the do-gooder/philanthropist and the “experts” in receipt of their research funds – an unequal relationship. Our families collide with ideologies that we are forced to question. Not “fitting in” is another way of describing how we are placed on the margins of society, or discriminated against. Relatively recent disability laws are made to protect us from exclusion, giving our children full citizenship rights.

Still, we struggle find such justice for them within their daily lives. We first look to school systems and are met with the red-tape of the process of getting IEP’s and special accommodations and quickly realize it’s a legal issue and process. I often wonder which “side” that law protects. We parents (I am writing as a mother so I have to assume that if you are disabled/autistic reading this, you will understand that I recognize this also as your issue) don’t count on having to fill in reams of paper applications, spending hours in meetings, navigating government support systems and administration when we are swaddling our new bundles-of-joy. The navigation to be special – not that it’s our choice – indicates from the start that we’re not supposed to be this way. Our children aren’t supposed to be autistic and public schools protect themselves from us with the red-tape, and we have to fight for our children to be included, not marginally integrated or tokenized. Most of us don’t “fight,” we become diplomatic contortionists and try to get our kids “in” to the extent we can. While it’s a worthy fight, it’s still one that we’d rather not spend our time on. We look forward to the day when autism – about twenty to thirty years behind our recongition of other disabilities, including intellectual disabilities – is widely accepted and welcomed in society. With that welcoming is also a recognition of the intersections between race, culture, gender among other interlocking connections, that make up experience.

As I let Adam go into the world, with the support he needs in order to be an equal citizen, I am always working on my visions for him as a parent. The other day, I thought long and hard about a photo I collected from Toronto’s Abilities Arts Festival a few years ago. It is a photo where two intellectually disabled parents sit on the couch with their three typical children — a “normal” family photo called “Lucky Strike.” The subjects also wrote a paragraph about how they got married and had a family with the help of their support workers. It dawned on me about Adam and his family: there is no reason why Adam may not have a family of his own, by accident or by choice as is the cycle of life for many a typical person. There is no reason why he cannot attend higher-education as an adult. There is no reason why he cannot participate in whatever he wants. It is, after all, the law, granted, subject to enforcement as well as interpretation and dominant social attitudes that are still weighted against the disabled person. We also know that not all our rights are enacted and there is a hesitancy by many families and individuals to go through the legal process. Not all universities understand the need and function of the aide worker. Although York University accommodates people with disabilities, it found itself in a legal dispute with Ashif Jaffer, a student with Down syndrome, because he claimed the university did not accommodate his needs. For these reasons, we have to keep on working hard, and likely take a few risks, for the rights of our beloved family members to be included with the accommodations that they require. This means also the help of aide workers and various technologies, among many other individualized needs.

People can have families and also be supported by others. Our children, even our non-verbal ones, can have a say in their plans and lives with guided decision-making practices. Non-verbal people may be able to type or write visual essays and participate in research about autism, and all autistic people have a right to both participate in research and have results disseminated to them in ways they can use and understand. Check out websites on emancipatory research and visual essay formats. No it’s not easy to do, but we’re starting to do it and we are inevitably going to learn by doing.

An “emancipatory” life requires support and that support requires a vision of possibility, enablement, democracy and a plan. As a paraplegic requires a wheelchair, many an autistic person requires people in their lives to support them getting to and from destinations, to having families, to making decisions, to managing the many details of life. Some of this right now is a privilege for the families that can afford them. It is, however, everyone’s right and I for one want to hear more stories about how families and autistic people are helping to let autistic people live their lives as autistic people. For the families who are able to provide the supports we seek from society and governments, we need to hear your stories in order to provide more buidling blocks of enablement.

What is independence? I can’t work on the technology of my computer on my own. I need tons of help with it. I need extra hands to help me around the house and in managing a schedule as a single mother. I need teachers, handy-men and someone to help me when I’m ill. I build my human network as a result of necessity. Others also need me and I am able to lend my hand or my special skill set. For reasons revolving around Adam, I am sensitive to our capitalist notions of independence and how that seems to relate to the family and school. Are we creating communities of people who are interdependent on each other, or human silos? How “happy” does that latter future look like sitting there all alone in them?

Here’s a future that I can see unraveling before my eyes, despite the struggles, tensions and issues we presently encounter and grapple with: I see more people employed in these areas to assist and guide, but further than this, to balance the power that can be offset by the “abled versus the disabled.” Ergo the terms “assistants and aide-workers,” not therapists. I see more effort towards emancipatory lives for the autistic, of all “functioning” levels. I see our growing ability to understand and respect one another, to honour the visual way and other modes of learning and communicating, presenting and even reading the materials by individuals with autism. It is a reciprocal human economy with autistic people in it.

For the first time since I’ve had Adam, I imagine that it might be possible, as Adam is my only-child, that I could one day be a grandmother after-all. It was actually one thing that made me a little sad when Adam was diagnosed — the world seemed to be locking its doors to us so soon. Of course, all of this is Adam’s choice, hopefully. It’s the choice that matters. The principles upon which I now imagine and locate our lives, in practice as well as principle, is one of possibility and of how our lives can be enriched, even made better, by including autistic people in them.

Adam’s life should be one of his own making, and I am here to support him down his many paths. The questions I now ask more often, are not only about how much work does Adam must do (as the onus has, to-date, largely be on the autistic person to become more normal before s/he can participate in society), but how can I help him obtain for himself not just a “quality of life,” but a vibrancy, of life — the excitement of possibility and choice — that many of us took for granted while we were growing up? This also belongs to him.

This can be our future — for our children and even for us as parents of autistic children. This is our Adam Family.

References:

Mats Alvesson & Kaj Skoldberg, Reflexive Methodolgoy: New Vistas for Qualitative Research, 2nd Ed.

Pothier, Dianne and Devlin, Richard.”Introduction” in Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law, edited by Dianne Pothier and Richard Devlin, pp. 1-24, 2006.

Happy OM

Filed Under (Ableism, Acceptance, Adam, Autism and Learning, Development, Joy, school) by Estee on 21-06-2012

Should I be looking over my shoulder? As autism mom and son are confronted with many obstacles, feeling settled seems like something that will be stolen from us at any moment. Nevertheless, I’m going to write about how happy I feel today because I recollect the difficult June we had last year when Adam’s former school shut down his class. They tried to place him elsewhere after we were given notice, but it didn’t work out. We scrambled to find Adam a new school, and that school is an ABA school. I fretted, of course. While we’ve always done some ABA alongside play-based and other programs that were very effective in Adam’s early years, we had good and not-so-good experiences. I learned that no matter what form of “therapy,” you decide to use for your child, it can all go south if people believe autism can be cured, or that autism is something that is an unfortunate act of nature (or whatever). Adam is a person-first and there is a fine line between nurturing the person — their strengths and challenges — versus viewing autism as just a “problem” that should be fixed at any cost.

I realized during a camp meeting today that it is a year later since the difficulties of the last one. After working with the head of Adam’s school, I feel we’ve got a pretty good thing going. We’ve worked together and with Adam’s excellent team which has been quilted together over the past decade. I am able to provide a lot of input, and Adam’s team go into the school to contribute to his typed communication, and other needs. Along with the structure that his type of school can provide, this is what makes it work for us because we can bring in the academic programs that Adam also needs and they are customized. We cobble our program together.

Adam seems more relaxed, cooperative, happier, and it feels like he’s getting ready to spread his wings a bit farther. Every day, Adam takes his own iPad pictures and sends me an indepedently written recount of his day. I get this by email. I sometimes send pictures to the school of things they don’t know anything about, and Adam recounts his weekend activities, for instance, on his own. They are still short sentences, and some days they are more detailed than others, but they are his. He has moved beyond sight-reading to phonetic reading and spelling, and this is pretty huge. He approaches his peers and wants to play with them in the way he never has before. He doesn’t know how yet to ask “play with me,” but it’s the first time he consistently wants to be with other kids, and not just the adults. We have our mini-conversations on our way home from school in the car, and on some days, he sustains his eye contact and talks to me with such engagement and intention that he commands mine. He still struggles with spoken language, but he speaks a lot more now and it always improves, although he is inconsistent. I know this sounds confusing, but Adam is complex. He says some pretty neat and funny stuff too, attesting to his sense of humour. It’s amazing what the man of few words is able to communicate and make us understand.

Today at the camp meeting — an inclusive camp — it was pure pleasure seeing everyone so excited to see Adam again. This is a camp that really cares about accommodating him and communicates well with us. I thanked my lucky stars to have such a wonderful group of people helping us out every single day as I sat around the table. For all the mountains I feel we climb, I just want to savour this. I want to thank all the fabulous people who make this happen for Adam which seems like a stark contrast to what the public system will offer us. In such good moments, I feel I must remind myself of how important it is to change the way we approach public education for autistic children. It is so disappointing how the system wants to cut back Educational Assistants here in Toronto, and Special Ed, and inclusion seems a priviledge for the verbal and “well-behaved.” The system is sick, not autistic children. I keep wondering why the cut-backs here, and have to assume (lest I use a less polite word) it’s because of the “cost,” and the doubt that autistic people can contribute or be of any value to society– a ratio that tips the economic scales against us. It seems to boil down to that.

To close, I end with a more optimistic tone — how the camp head revealed that many counsellors asked to work with Adam this year. Apparently, so many people at camp always want to come over and say hello to Adam that they have to ask them to hold off in order that Adam can get on with what he’s doing. He’s like a “camp celebrity” (their words, not mine). Here’s a kid who can’t speak fluently and who has many challenges; a child for whom standardized tests do not serve, and the public system underestimates.

This morning, Adam was chanting “Happy OM,” before he left for school, and I for the camp meeting. I didn’t know it was prophetic about the day so far. I hope for other positive signs.

Happy OM…happy OM….happy OMMMM.

The Purpose of Parenting Studies?

Filed Under (Family, Inclusion, Joy, Parenting, Research) by Estee on 29-05-2012

At IMFAR and with other researchers I meet, I am confronted with many requests to participate in “parent studies.” The purpose is to study what levels of stress, and how different it is to parent and autistic child. I am reticient to participate. What about parenting are the researchers trying to find? Are we attempting to affirm that life is harder with an autistic child? Of course, we have to ask what the researchers are hoping to find. Is the purpose to support parents, the autistic child, or both? Or is there a more insidious angle to this kind of research, that is to say, that autism itself is the problem? I know, that may sound blunt and provocative, but think about it. To what end are we really getting on with the business of helping autistic people contribute to society as autistic people? How are we really helping autistic people and their families with their quality of life?

Honestly, I don’t see the purpose in trying to affirm that life might be tougher with an autistic child in it, and I’ve written about that with the unconfirmed (by research) assumption that autism is the cause of increasing divorce rates here. All I know is that when Adam is happy and accommodated, I am very happy. If he is excluded, I too feel isolated. What is it that makes the perception of life harder, then? What about society could assist in supporting us all? These are some of the questions I wish the research would tackle.

A few parents and some commenters on other blog posts have stated that some parents, myself included, are in a state of denial by insisting that we find joy in our children. Asserting that your child is a joy is not a denial of the challenges that we all face. The act of assertion is the affirmation that our children’s lives are important and valuable. On all counts, Adam has been my greatest joy. Yes, I get stressed in trying to understand his discomfort. No parent wants to see their child in distress, and we can focus on that in some of our research.

Most of the stress we faced lived in incompatible circumstances. Once I could see that our environment had to be calm, and that there was no time for compromise with people who had no interest in supporting us, life became a little smoother. I’ve had four years to wrap ourselves in the warmth of the people who really care about us. Let’s face it, our plates are full and we don’t have time for everyone. Energy must be spent wisely.

I dont’ like to give advice, but I’ve had a few thoughts over the past few years about parenting an autistic child. If there is parenting stress, perhaps evaluate the other underlying factors that could be relating to the stress instead of just focussing on the autistic person in the family. This would include all of your relationships, including the one with yourself. Think about how you communicate about autism, and consider changing your thought patterns, attitude and language surrounding it. I know that as a mom of Adam, I’ve had to work, and continue to work, daily at my expectations and putting them in check. I look at my own anxiety levels and what I do to add or detract from the stress. Even when I’m at my limit, I accept bad thoughts and let them go through me. I express them in private and then my head is clear again to see Adam for the beautiful boy he is. My attitude is very important. Loving and accepting Adam has also helped me to love and accept myself, which wasn’t (and sometimes still isn’t easy). Yet what’s the point in having a double standard?

When others have accused me of being in denial of other people’s stress or autism itself, I came to learn that my approach was my way, the way I was raised and my survival mechanism. There is absolutely no one who can tell you how you should raise your autistic child, and the assistance out there is on the journey as much as we are as parents. And, by the way, we all have a right to enjoy our children for who and what they are! It is up to us completely to advocate for our children — our right to have and enjoy them, to be included in society, for a good and suitable education, for accommodation, for respect, equality, and excellent opportunities and living environments into our children’s adulthood. There’s no getting around it and no excuses. It sucks some days, but we can’t complain. We have to stick together and stop the urge of research and the typical population to pity us. Pity won’t get is the services we deserve. If we continue on the path, we’ll just get the dusty old van and the group home. Not to knock some of the individuals there who sacrafice and provide for our children on a daily basis. It’s just that I think people with disabilities don’t deserve dusty vans and the poverty line.

I just think we all deserve better. Parents feel stress because of the lack of support, accommodation and acceptance. We feel it because we are stared out in the check-out line, or at the park, or while waiting to get into school. We feel it when someone marks “retard” on the picnic table outside our kid’s school. Can you add ot the list? Yes, our children indeed have challenges. Stigma makes these challenges a whole lot more difficult. Now think of how the autistic person must feel.

On the up side, there are many couples and single parents who have found their niche and who have pulled together with stronger families because of the challenges that an Abelist society brings to us every day. There are friends who really pull for us and who believe in us as a whole, not a fractured, family. There are people rooting for us in every way. Here’s where to put our focus.

I have only one child. Sometimes I think the time I spend on Adam may be like raising a group of children, but he’s worth it. He’s worth doing the IEP, organizing programs, doing advocacy work, managing teams, people because there are so few autism services and programs suited for the autistic person. It’s like inventing the wheel over here. I don’t have to manage the jealousies of same-aged siblings who don’t understand why so much more time is spent with the special-needs child in the house, and even the sudden “adult” responsibilities they may feel. I know of many parents who do. We all have our own package of issues, though.

I hope that researchers doing parent-studies have these points in mind. Society’s view of disability has a great deal to do with how we parent, how we view our lives, how we convey autism and disability to our communities and future generations, and how we are supported. It’s not the fault of autism or the autistic child. We must be so cautious in slanting any research in this direction.

Google’s Valentine

Filed Under (Inspiration, Joy, Play) by Estee on 14-02-2012

I’m sure you’ve all seen the Google Valentine co-animated by Michael Lipman. The boy keeps trying to win the girl’s heart with things. In the end he does simply by sharing in the same activity with her.

It reminded me of how to engage with our autistic children this day and every day. Sometimes when our children engage in “self-stimulatory behaviour,” we don’t view it as functional so we don’t engage in it ourselves. Without making a big deal of it, try to do it quietly. The less words I use and the more I am with Adam, the more he can be with me. I am always taken aback at out loudly people talk to autistic children in particular, and how often we ask kids to mimic our “normal” behaviour. We need to take time to engage in the activities that make them happy. We also need to do it in order to see the value of our children as autistic people.

It’s cute. Enjoy it, and have a great Valentines Day, every day, with those you love.

Belly Laughing

Filed Under (Joy) by Estee on 08-02-2012

I had electricans in my house today as I finish fixing my kitchen. While they were doing their work I was fooling around on Facebook. There’s a new map application that let’s us mark where we are visiting. Seeing as how I made my first visit to the east recently, I wanted to gain some satisfaction by looking at my jaunts like red pins on paper. The blank white spaces in Africa and Russia reminded me how much more there is to see and learn. The white spaces felt like hope and possibility. As the last outlet was installed, I sighed at the continents.

If I get those calendars that list the countries and their codes, I have to put a check mark where I’ve been. With this new Facebook app, I was writing down all the places I’ve visited and lived until I received a message. “Wow you travel fast,” it said. “Are you Santa Claus?” I clicked back to my “wall.” I realized that the app posted every place I’ve visited as someplace I was currently in. “Estee Klar is in South Carolina. Estee Klar is in Freiburg.” The list was long and I realized that all my friends were receiving these endless messages on the “home” page. It appeared that I had traveled from Alaska to Sri Lanka in one day. How embarrassing, but it’s such a me thing to do.

I’ve made a vow to myself not take these minor stories for granted. So tonight, I was telling it to my boyfriend. Adam was sitting in between us before his bed time. I was laughing so hard at my own “joke” that I couldn’t even tell the story to him clearly. Adam thought this was hilarious.

“Laugh!” he exclaimed as I managed to get out the first two words. “Laugh. Laugh!” he said giggling at me, leaning his whole body in my lap. He looked into my eyes and laughed harder and we fueled each other until I was breathless. This was a good moment for him. He’s at that age when he makes himself laugh endlessly just so he can keep on feeling good. I remember when I did the same thing.

After the fact, I have to wonder how many times Adam gets to see his mother come undone in such a happy way. It’s nice to be okay with my “mistakes” and laughing at myself for it, even if I need some Facebook lessons. It’s even better when Adam laughs with me.

Everyday Is A Work of Art

Filed Under (Art, Inspiration, Joy) by Estee on 07-02-2012

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I have a favorite non-autism blog right now. It’s by friend/artist Carla Lipkin called A Water Colour A Day. I love Carla’s work (and she’s a lovely person too).The blog is a work of art — you must check it out.

It got me thinking of how another friend of mine, years ago when Poloroids were the rage, took pictures of herself every day the year before she turned fifty. On her fiftieth birthday, she put them all up and they made an exceptional piece. Blogging and journaling can be art too. The watercolour above is something I did a couple of months ago really quickly. I used to paint all the time while I was taking art studio and art history. Now it seems my duties as mother have taken precendence over the projects I really love doing. I have to ask myself why this has happened?

Looking at Carla’s blog made me think about the importance of the everyday. For some of us, we like to document it. We really do take the small stuff for granted. Adam also has artistic ability. Wouldn’t it be fun to make a little time every day to document something of our lives, no matter how seemingly trivial or small. At the end of the year these little things add up. Besides, isn’t every life a work of art?

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.