The “Adam Family”

Filed Under (Family) by Estee on 25-02-2009

As usual, I like to write most of my blog posts on the fly. Some are essays, some are just thoughts.

I’m going into the fifth month of my separation from Adam’s father. Separating after twelve years is not an easy task. It’s a real process of reflection and self-discovery and when children are involved, rebuilding a new type of relationship. By looking at pictures and old photos, we are reminded that what we build, even after divorce, is so important. Everything and everyone has something to teach us. Everyone we encounter is our teacher. My stepchildren are so important to me. Adam is so important to me. What I am learning is incredibly important as I learn to move on and continue growing.

So, for Adam and his wonderful family, I make this video as a tribute. I want Adam and the other kids to remember that what we built (and continue to build) is never really ever left behind. It lives within us. For even in divorce (despite the difficult process itself) what can remain, still, is so much love.

Learning: A Process of Discovery

Filed Under (Uncategorized) by Estee on 20-02-2009

I want you to watch this video presentation by Will Wright: “Will Wright Makes Toys That Make Worlds.   Take a few minutes to watch before reading the rest of this post. Wright creates video games that enable people to create worlds. He praises his Montessori school for the method in which he learned — which is a process of discovery — and uses the Montessori model in his games. 

Adam goes to a Montessori school. At first, I was told that “autistic kids shouldn’t go to a Montessori school because it has little social interaction opportunities.” Then, there was a Montessori school built here in Toronto that used ABA therapy — totally antithetical to the Montessori process. Needless to say, I never sent Adam there and I believe the school is out of business. The classic Montessori school has been a blessing in our lives and a boon to Adam.

Adam has more friends in this Inclusive school than ever. He is into the creation of his own creatures and has launched into a realm of pretend play that didn’t obviously exist for him when he was three. I say obviously because learning for Adam has taken a different path — no less important or valuable than traditional methods. Obviously might replace the world “typically.”

It is here that I will speak out against Applied Behavioural Interventions for autistic children. My child is barely verbal, yet he’s social. He loves pretend play which he didn’t “display” when he was younger. I cringe at the attempts of one former speech pathologist who made Adam “feed the baby,” each and every single day in preschool, but completely ignored the way he played on his own. I mean, how does that expand the mind?  Adam seemed so angry with her. He was probably thinking, “here comes that boring lady who wants me to feed the baby every day when I’ve got better things to do.” Today, I watch Adam progress and evolve, watching others and wanting to learn so badly. This can only come from within him. The environments we expose our children either nurture or squash the desire.

The bottom line is this: autistic people learn. They discover. They have their own path. I want this game for Adam. It has no set conclusion. It is open ended. It enables him to keep discovering, as does his wonderful school. He can play this with any member of his family or his friends.

While Adam does get lessons in structure, sequencing, motor planning and much much more, there has to be a balance to let children be and discover. People do not fit into little boxes. If we put them there, we may never understand their true potential.

Happy Face

Filed Under (Adam) by Estee on 19-02-2009

Adam came home from Florida on Monday with his dad. When he arrived, he was cranky. A mother knows the cries — he was hungry I deduced. A plane ride of Goldfish and movies didn’t suffice the large appetite of this otherwise slim and well-metabolized little boy.

I am the gushing mother of Adam. I’m ridiculous at it and love to do it here on this blog. What can I say? I don’t mourn the loss of a “normal” child to an autistic one. Adam is Adam and I am lucky to have him as part of my life as I watch him grow and evolve. He is not a greedy little boy, but he is generous with himself and his heart. He does this with few words, yet he manages to do it better than most.

Yet, when he’s cranky, it presses my red alarm buttons. I fed him quickly. So happy was he that I explained that his “tummy was happy,” and I drew this happy face on his actual stomach. Adam is really into faces these days. In a world that believes that autistic people don’t “do” pretend play, he not only makes faces with things and food, he was making many things with strings of his spaghetti once his appetite was quelched. He also did not stop looking at his “happy” tummy, and he laughed hysterically.

Yesterday (here I go a-gushing again), his aide told me that Adam was painting. There was music playing in the background and Adam proceeded to paint carefully and with intention along with the music. All the children in his class gathered around him. They expressed to the teachers around (while Adam heard of course) that he was a great painter….”he’s better than Van Gogh,” they exclaimed.

You see? There’s always something to celebrate. There is always something to make us happy.

Who is Blind?

Filed Under (Autism and The Media, Critical Disability Studies) by Estee on 15-02-2009

I am catching up on my movies. After just finishing the movie Blindness, I feel disturbed at its depiction of blind people as totally incompetent, they are quarantined and incarcerated, as disabled people were not that long ago. Then, on About.com, I found this protest:

National Federation of the Blind Protests the Movie Blindness
Monday October 6, 2008

The National Federation of the Blind (NFB) announced its strong objections to the new Miramax film release Blindness, promising to protest at cinemas across the nation. The film, which opened on October 3rd, is based on a novel by author José Saramago, in which the people of city suddenly go blind as a result of a certain virus. Fearing that the mysterious blindness is contagious, the government quarantines the blinded citizens in an abandoned asylum.

The NFB claims that the film will do substantial harm to the blind. Dr. Marc Maurer, President of the National Federation of the Blind, said “Blind people in this film are portrayed as incompetent, filthy, vicious, and depraved. They are unable to do even the simplest things like dressing, bathing, and finding the bathroom. The truth is that blind people regularly do all of the same things that sighted people do.”

I admit to listening carefully, perhaps sentimentally to the the last lines in the movie — the point where Danny Glover’s voice over comments at being afraid of losing the “intimacies” from being blind — the connection, the oxymoron of seeing more when blind. It’s spoken as if once sight returns, they will all put up some sort of guard yet again and cease to connect. It’s a quaint idea. The problem is, is that it is just another stereotype, just like autistic people are all “smart” and all blind people can “see deeper” into things by virtue of some sixth sense.

It is important to also note that not one actual blind person was in the movie. I guess we begin to SEE only when we recognize that all people are the same — no matter what their disability. “We are all perfect despite our imperfections,” I said in The Autism Acceptance Project video nearly three years ago now. “We are all the same despite our differences.” Yet, we are still so very blind to accepting this fact.

Be Still My Heart

Filed Under (Uncategorized) by Estee on 14-02-2009

Be still my heart. It is Valentine’s Day, or as I say to my son Adam, who is for the first time ever, traveling without me with my soon-to-be ex-husband, “Happy Heart Day.” But can the heart always be “happy?”

I say it to him because he is young. He understands what happy is, and enjoys the “happy face.” He loves toys with faces and makes faces on his plate with his food. It is his fascination – the face, that is. Simon Baron Cohen ought to check out my son’s sheer love of the face.

I refer to Adam often as my heart. We parents refer to having babies as our “hearts walking about the earth.” This cannot be more true. It is the greatest gift and the greatest pain. I believe all great gifts have this enormous duplicitous truth.

Be still my heart as Adam looks out in this picture his dad sent me as he peers our at the ocean in mommy’s old reading spot. I am happy that he’s happy, and of course sad I am not there. Being alone without my son for the first time is something to get used to.

Heart Day is bittersweet. We can be struck by cupid’s arrow that symbol for being caught by elated love, but it’s inevitably going to bleed. We can have expansive hearts for our children, and broken hearts from our lovers or friends who leave us or break a sacred trust. That which we deem sacred is at the highest risk, perhaps because we put it way too high up on a wobbly pedestal.

The heart is a marvelous thing. It is that one organ that keeps us moving that pump pump thumps with the vibrancy of life, and yet, we feel it. It can fly, it can suffer extreme pain. There is a lot of soul that pumps within that engine. We feel our hearts, quite literally, in every aspect of our emotional lives. If we sit back and just feel in the moment, that physical feeling that is emotion comes from two very important places – the stomach and the heart.

“I cant’ stomach it,” is a phase for something we cannot emotionally handle or that which we find disgusting. When people are upset, they often cannot eat as the stomach clenches with pain or worry.

But today we celebrate love with the heart. Love which is our lifeblood, our reason for being. We are programmed to love. I am most fortunate to have a son who I love unconditionally. I feel I have experienced life’s greatest blessing to know such love.

My heart is out there by the ocean, but I take solace in knowing that he’s happy. I could cry at the commercialized hearts in store windows and mourn the loss of coupledom as I go out and about today on my own. I could focus on only those lovers holding hands today and ignore the other people, just like me, who want to just get through another day of plastic and glittery commercialized happiness.

Naaah. It doesn’t work like that. Of course, going out today may be treacherous, but my heart is Adam and I will cherish that. My heart wants to be open, no matter what happens. Gentle am I, and I will be, with myself; a lovely, openhearted person who will celebrate myself and be open for what may or may not come.

At my age, it’s quite a revelation to love oneself, especially after the heart has been hurt. So imperfect am I, that I will celebrate my idiosyncrasies and the fact that I have given so much and will give that space and love to myself. Celebrate, I will, the dream I have fulfilled in having a wonderful and affable child who will grow up, I know, to be a generous man with his own heart. Understand, I will reflect, that the heart only grows bigger with scar tissue. Happy I will be, with the flow of this life I live and accept a new relationship with Adam’s father. Content, I am, in all of life’s ordinary moments.

Today I will take simple pleasures by recognizing life’s important blessings and lessons. And if for one moment, I feel sorry for myself because some silly Hallmark symbol I see out there delivers me the message that I’m not “complete” without another, well, at that point I can guffaw, maybe giggle with tears, and just remember how complete and lucky I already am.

____

Postscript: After writing this post, Adam sent me a “Happy Heart.”

US Court Says Measles Vaccine Not To Blame for Causing Autism

Filed Under (Activism, Autism and The Media, Autism and Vaccines) by Estee on 13-02-2009

Last night, while going out with a girlfriend, I ran into two comments about autism. The first was the “I’m sorry” [your kid has autism] comment, to which I can now calmly reply that this person need not be sorry for Adam is the best kid in the world (and then explain nicely why I respond as such). In fact, when I see neurotypical kids nag their parents and get greedy for things, I feel I am blessed with a conversely gentle, affable, loving, amazing child who is growing and learning and changing by the day.

The second was the usual question I get “So, what do you think of Jenny McCarthy?” Well, all you need to do is go to the right side bar, watch my Autism In The Media video for an answer on that. Usually, people unfamiliar with autism and the politics surrounding it will believe Jenny and are shocked that I do not endorse her. They sort of look at me a little perplexed and conclude “well at last she’s raising awareness.”

As I’ve said before and will say again — not all awareness and advocacy is healthy awareness and advocacy. Anything that shifts public perception to lesson the value of human beings based on their disability, sways people to feel sorry for us or our children, or endangers their health, is not advancing the needs of autistic individuals or creating an Inclusive society.  It is so unfortunate that Jenny has received so much air time and so many children have died as a result of her claims that vaccines cause autism. Refreshing was the woman last night who had asked me the question about my thoughts on Jenny. She also managed (as a scientist) to understand the scope of Jenny’s damage to autistic people.

This has been going on (and there are much better bloggers on the science and politics of vaccines and autism including Kathleen Seidel, Left Brain/Right Brain, Mike Stanton…). As I sat with my girlfriend at a restaurant last night, I receive an email to watch CNN. Any time there’s something about autism, I get similar emails, but the thing is, this is old news for so many of us. Those who watch the science, instead of following Jenny-And-The-Quacks, have known this for a long period of time. 

Andrew Wakefield is busted and CNN is finally reporting (what most of us already knew), that vaccines do not cause autism. Do you think Oprah and Larry King will follow suit? Do you think that science will be of more interest than mysticism, speculation, sensationalism, and autism as Hollywood entertainment?

For more on the US Court ruling, view the article here.

There Is A Better Way

Filed Under (Activism, Autism and The Media, Critical Disability Studies, Inclusion) by Estee on 11-02-2009

When I look at this video and of course, the recent CBC Documentary Positively Autistic (click on it on the right side bar of this blog for the actual video or go to http://www.cbc.ca/national/blog/special_feature/positively_autistic/).

I am very proud of those of us who step out and take the risks we need to take in order that we achieve a better and fair education for our children and an equal treatment from others. We work hard to try and convey the message that we need better understanding and better services across the board. And we do it all the while being called “crazy” and “unreasonable,” or we are the parents who love our “little babies now,” but we just “better wait until they grow older!” attacks. I suppose any movement that seeks to positively change things while risking out-of-the-box thinking, will result in opponents. It’s easier to stay with the status quo.

Coming from the place of diversity and Inclusion for all will advance all of that. I watched this video again, and felt it needed to be repeated.

Of course, most of us didn’t find Sawyer’s insistence that we must all be heartbroken (or continue to be) that accurate. But then again, joy, sadness, struggle — aren’t these the things that life is made of? Do we not create our own happiness? As I mentioned in the post The Metamorphosis, happiness, for me, is watching Adam grow and develop, and other unseen if not brief moments that we usually do not recognize for they come fleetingly. We just have to tune in to them.

The Metamorphosis

Filed Under (Single Parenthood) by Estee on 09-02-2009

I’m a self-proclaimed book-worm. Mind you, I haven’t read James Joyce. I haven’t read a lot of things listed in the 1001 Books You Must Read Before You Die. As a writer, sometimes I forget how to spell a word. I find many mistakes in my writing. I care not much for perfection, but process.

I do read, perhaps, too many books at one time. If one really captures my attention, I may hold on to it from start to finish. Lately, I read them all at once, picking up chapters and paragraphs here and there that still all seem interrelated. I learned that there are many ways to read a book, and it’s not always cover to cover.

As I am now alone in the world taking care of my son Adam, books are the friends and lovers that remain. Ready and loyal, they await me. They care. They give me guidance when I need it most. They are there when I need them and stand with allegiance, even if they agitate me with their sage or simply stupid ideas.

When I was first separated from my husband last fall, I turned to When You’re Falling Dive.

The book, by Mark Matousek, was well timed at a point when I was falling, but not yet diving like I meant it. Then I think, it is fine to write about the Joy of Autism, and I suppose we all find that falling-point in the beginning, but there I was last fall, suddenly alone and I had to eat my own words about joy and acceptance, because let’s face it, when something happens that you are not in agreement with, it’s more difficult to accept. Here I was (and still am) at a critical juncture where I can dive to live, or get stuck in the purgatory of despair. I choose the former.

So Mark’s book was like a special visitor who came at the right moment in time. Quoting from Ram Dass, the Dalai Lama and others in the midst of terminal diseases, he taught me that it is actually these very rough times that teach us how to live and be alive; that it is only in crisis when we become awake again. It is an opportunity. “Terror can be the door to enlightenment,” he says. “Terror is fuel; the wounding is power. Darkness carries the seeds of redemption. Authentic strength isn’t found in our armour but at the very pit of the wounds each of us manages to survive.” To translate the words of the Dalai Lama, we have to learn to walk joyfully through hell.

Terror and change can be the beginning of metamorphosis. Meta, from the Greek meaning to alter, or occurring later than or in succession to; and morph, meaning “form.” So, to alter our form is something that comes from within first, to without, second.

I really hate the idea used with autistic children – that they must morph into something else – coming from without their “cacoon.” I prefer the idea to be applied to all of us – that we have the capacity and the will to stand up to adversity not with armour, but with an open heart in order that we learn and change our form as the purpose of why we are here in the first place.

I consider the books I read part of my journey, so I had an idea that I might as well write about it! There is the outward struggle and the inward coping and managing. But there’s even more to adversity. What does it have to teach us?

Of course, no metamorphosis cannot occur, for me anyway, unless we also turn to creative acts and ideas. I turned then to Twyla Tharp and her book The Creative Habit: Learn It And Use It For Life.

For any writer or creative person, I highly recommend her book. I was reminded again how artists of all kinds must wear their hearts, so to say, “on their sleeve.” I learned that if you cannot transcribe the daily aspects and truths of your existence and what happens to you, you can easily be an artist-liar and churn out a bunch of crap. She says:

“The way I figure it, my work habits are applicable to everyone….My daily routines are transacational. Everything that happens in my day is a transaction between the external world and my internal world. Everything is raw material. Everything is relevant. Everything is usable. Everything feeds into my creativity.” (p.10)

The artist or writer, very much like the person, changes and sculpts the raw material into the finishing piece. We people, like art, have to take away our experiences and make sense of them. Victor Frankl, who writes Man’s Search for Meaning says that our suffering ceases to become suffering once we find meaning or tell it’s story. Creating and telling our stories is a must.

Be it losing my husband, or losing an expectation of the child we all think we’re supposed to have before we receive that autism diagnosis, the former idea is an extremely valuable point in the process of acceptance. We have to have the time to figure out our story. And it is time I need and am taking. It is way too early to tell certain aspects of my personal story – which is why I only allude to it within these blog posts. It is what we often call being “too close” to something to see it clearly. My mind, however, as is my spirit, are changing.

That said, I had to turn to the book On Bullshit, by Harry G. Frankfurt, just to make sure I wasn’t creating some of my own. I am not a fan of delusion. Not only that, I have certainly discovered that there is plenty of quackery and humbug to go around for all of us to choke on. Frankfurt quotes Longfellow’s verse who, he says, Wittgenstein used as his motto (remember that Wittgenstein is purported to have been autistic):

In the elder days of art
Builders wrought with greatest care
Each minute and unseen part
For the Gods are everywhere

Frankfurt concludes on this that,

“The point of these lines are clear. In the old days, craftsmen did not cut corners. They worked carefully, and they took care with every aspect of their work. Every part of the product was considered, and each was designed and made to be exactly what it should be. These craftsmen did not relax their thoughtful self-discipline even with respect to features of their work that would ordinarily not be visible. Although no one would notice if those features were not quite right, the craftsman would be bothered by their consciences. So nothing was swept under the rug. Or, one might perhaps also say, there was no bullshit.” (pp. 20-21)

Conscience. I like that word a lot. I think that many people delude themselves of the truth, but the conscience continues to nibble away as a messenger of the truth. If we are lying to ourselves about the true nature of something, we might try ignore it until we become agitated, ill or simply stuck. So as my guide, my conscience is there as I sit alone now in the dark of the four o’clock morning, reading these books as I am a woman soaking up solitude; working through every motion, every fear, every hope that solitude now has to offer.

Marion Milner, British psychoanalyst and writer of A Life of One’s Own is quoted by Florence Falk in On My Own: The Art Of Being a Woman Alone, which I bought right after my marital separation, but couldn’t bear to read right away until it nibbled for my attention. It reminded me of what Bette Midler said in the film The Women, where she tells a devastated Meg Ryan (who discovered her husband was having an affair), to be SELFISH.

Sitting back in a yoga-retreat where the fridge is padlocked in the middle of the night, Midler finds a joint from a worker and shares it with a highly dedicated, hard-working, high-profile Meg Ryan, who can’t figure out how she could be so betrayed after all her dedication. In Milner’s, and it seems Midler’s view, SELFISH is not a dirty word. It means uncensoring oneself “agains the verdict of [one’s] harshest internal judgement…For if selfish meant finding out what made her feel alive, well, then selfish she would be….[Milner’s] quest for happiness is what touches us most; for as time passed, and as she allowed herself the solitude to watch, to take in, to simply be that is so necessary for such an undertaking – all the while living an active life – she discovered, to her great surprise, that the ‘best things’ in her life had nothing to do with ‘successes, either in friendships or work or play,’ but were related to ‘very small moments’ when she let her rational mind fall away and was able to take in the world intuitively. In her pursuit, her ‘worst sin’ was to let herself be pulled in blindly in all directions so that she had no vitality left for needs that belonged to her personal self.” (pp.173-174)

I had to laugh as Meg unravelled in such conservative ways. She reminded me of myself — trying to be everything to everyone. Trying so darn hard. Of course, Midler’s advice was the turning point for Meg in the truest Hollywood sense. Meg’s character begins to write lists “What do I really want?” to determine the path to her future and turns a passion that she was chastised for, and didn’t really honour. She spent time filtering herself, distilling her life and her thoughts until her creative process lead her to become a mind-blowing designer.

How often do we criticize the “nonsensical” play of autistic children only to call it inappropriate or not really play at all? How often do we do this to ourselves?!! And yet, it is all play – these moment-to-moment experiences of living that are so vitally important. We seem to fail to SEE them as we get caught up in other things. I see it in Adam in how he plays in order to discover on his terms. I see it in my play as I huddle under the covers with the moon shining in my eyes in the early morning, beckoning me to read and be alone (which is not to say lonely as being alone is taboo in our culture), until I push out this stream-of-consciousness type of writing that is actually leading to another place.

You see, it’s all play, it’s all valid, it’s all part of the creative experience of living. I am transacational in the moments of my existence – from waking up to moonlight, to feeling the stark pang or the sudden sucking in of my breath as I awake to realize that I’m still, for better or for worse in these difficult moments, still alive (as if waking from a bad dream); to realizing that the bed, save for me, is empty and the house is unusually silent. I have taken the course of focusing on stability for my son – my beautiful autistic son and myself in order to rechart our course. I savour the last moments in the house we built for Adam (or that backyard at least) before we must leave it, the floors and walls that will vaguely remember our names, and then forget us forever as it is inhabitated by new strangers. It is all these threads that I will tie together to render a beautiful story.

W.G. Sebald once said, “ I think fiction writing which does not acknowledge the narrator himself is a form of imposture which I find very very difficult to take.” (p. 4). In James Wood’s, How Fiction Works, he talks in his early chapters on the omniscience of the author in fiction writing. “As soon as someone tells a story about a character, narrative seems to want to bend itself around the character, wants to merge with that character, to take on his or her way of thinking and speaking. A novelist’s ominiscience soon enough becomes a kind of secret sharing; this is called free indirect style.”

Hmm. So it is inescabable – the SELF, that is, as we write stories, paint pictures, create characters. We are always there, orchestrating, making sense, be it for ourselves and for others.

Acceptance is a creative act. It is a process. It is filled with stories, characters, moments of beauty and sadness. In recognizing the duplicity in all things, at that point alone, we can begin to accept them.

Single Parent Study

Filed Under (Uncategorized) by Estee on 08-02-2009

Thank you to those who answered my list of questions regarding single parenting of disabled children (specific focus on autism to be determined). I am interested in both the female and male perspectives. If you haven’t already signed up, please email me at esteewolfond@mac.com.

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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.