My Photo
Name:
Location: Toronto, Ontario, Canada

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

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

Wednesday, January 09, 2008

 

Resolutions and "Realities"


"The systematic denial on science's part of personality as a condition of events, this rigorous belief that in its own essential and innermost nature our world is a strictly impersonal world, may, conceivably, as the whirlgig of time goes round, prove to be the very defect that our descendants will be most surprised at in our own boasted science, the omission that to their eyes will most tend to make it look perspectiveless and short."
-- William James

The wind is blowing in Toronto today. Up to 100 kilometers per hour. Just the right kind of wind for me -- the strong wind that can clear the cobwebs and symbolize new beginnings.

And so I wish you all a Happy New Year. I started mine with a health scare (my brother-in-law welcomed me to the perils of "middle-age")which is why I haven't written that much over the past month. Turns out I'm going to be okay. In the meantime, I spent the holidays so happy with my Adam. The way his hair swept in the breeze, the way he smiles and is so affectionate with us all. At the sudden possibility of my becoming very ill, I wasn't scared about the "future of Adam" anymore. I know, it sounds strange. All our time as parents and we fret about who is going to "take care" of our children when we're gone.

I had to spend the last four weeks wondering and preparing for just that. While I was certainly, upset, that people compare autism to cancer in my situation and the circumstances of my mother who has gone through cancer twice now, I was scarred at only having to possibly MISS Adam's future and all of his remarkable and ordinary moments. And then, considering that there are things simply out of our control, I thought that the one most important obligation we have as parents, is to have faith and let go of our children -- no matter what their "needs." I don't mean to give them to institutions -- heaven's no. I mean to believe in them and let them grow without strangling them with our selfish worry.

I had to think of the possibility that I would become very ill over the next few months. I had to think of all the people I have faith in, and with who Adam has forged his own relationships with, and rely on those people and Adam to continue. I had to drum up the trust I have in Adam, even with his age and vulnerability -- that he would have to "speak" for himself in whatever manner he would.

While I waited for my tests, I spent time enjoying Adam, reading books with him, still teaching and guiding as parents do, but I was very relaxed with him. We had lots of fun and he began to speak more. He wants to play with other children and I enjoyed watching him make his own kind of initiations. He played a terrific Simon Says. We snuggled on the Florida beach where my in-laws live, watched some thundering waves, and we were very content. I'm not saying that it was just my being relaxed that Adam "progressed" (in fact I'm tiring of that word because every human being evolves and the brain is malleable and fluid and everything always changes). I'm saying that we were relaxed and as a result, I probably could just SEE and appreciate more in and of him.

As part of my commitment to my son, I will finish my book this year and spend more time playing with him. Playing music, ball, Simon Says, and other marvelous games. Not to just "teach" him, but to be with him. I truly enjoy him. I think learning comes from being with and doing things together. When we spend too much time hypothesizing what autism is and why autistic people do what they do, we tend to miss everything. We imprison autistic people to our low expectations, often based in false or ever-evolving theories, and we so limit ourselves to the many possibilities and gifts that people -- all "kinds" of people -- bring us everyday.

You won't see me engage in every autism news item this year. You won't see me publishing the derogatory comments that I sometimes receive from others on this blog, and you won't see me respond to questions on how to "treat" your autistic child, or acknowledge how you think I should raise my son. You see, I expect Adam may read this one day. I have personal difficulties in making any suggestions as to how someone else's child should be raised because the same choices in raising any other child also belongs to an autistic or any other disabled child. No government-mandated and segregated "autism program" or "surveillance list" will limit us or our options, and Canadians might wish to rethink the backwards direction such "programs" may be taking us. If anything, I will celebrate our children with you, share in the challenges created by obstacles unnecessarily placed on front of our kids and the adults today who are paving their way.

This blog speaks for itself and for the way our family lives and the choices we've made. The last thing we all need is another "expert" in the overwhelmingly vast sea of false ones. God knows it is those "experts" that compelled me to write a blog and a book in the first place. I will work with others who wish to improve the quality of service, education and inclusion for their children -- which, in my opinion, should be based on the inherent and natural being of the autistic person. That, dear friends, is called FREEDOM. Freedom to be, to roam, to have the education one deserves. I believe in working steadily and diligently in bettering opportunities and changing attitudes, but not worrying in order to "make things better," or "to get more services."

We will hear different interpretations of life with disabled children and they will collide with the interpretations of many other autistic and disabled individuals. One person may ardently claim for "scientifcally proven treatment" based on their "reality." Another may claim their right to freedom -- the freedom to be disabled or or the freedom to have options for their children and for them to be included in schools and society. Wallace Stevens said "reality is the product of the most august imagination." We assume there is only one reality, one code, one cause, one "scientifically proven treatment." We have believed that one day, science will solve everything, says Jonah Lehrer (his last names ironically means "teacher" in German) in his book Proust Was a Neuroscientist. Yet, life as in art, is what we make of it. It is how we paint, weave and write it. And from such constructions, science attempts to deconstruct life -- from how we experience it. Lerher points out that artists like Walt Whitman and George Eliot "witnessed the birth of modern science...[they] contemplated Darwin, Proust [and] Woolf admired Einstein -- they never stopped believing in the necessity of art. As scientists were beginning to separate thoughts into their anatomical parts, these artists wanted to understand consciousness from the inside. Our truth, they said, must begin with us, with what reality feels like."

The challenge of the year as I see it, begins not only with scientific deconstruction, but with listening to experience, particularly the experiences of autistic people. Their art, their writing, their political activism are not pretty little pieces or trite ramblings we can consume on the margins and forget about while the scientists do the "big" work and enjoy our research dollars. Both art and human experience must inform science, not the other way around. It is perhaps this trend to view medicine and science as the explanation for all things human, the faith in "scientifically proven" and the marketing and the money that gets poured into such promises, that disturbs me most of all. For there is no code that is written that can truly illustrate or explain every human soul.

"Science needs art to frame the mystery, but art needs science so that not everything is a mystery. Neither truth alone is our solution, for our reality exists in plural." (Lehrer)

8 Comments:

Blogger Maddy said...

Sorry to hear about the health scare, that's always a very sobering experience.

Book huh! Hope it's going to have lots of jokes? So if I sign up now, am I guaranteed a signed copy?

Cheers

11:24 AM  
Blogger Estee Klar-Wolfond said...

Maddy,

Of course. Can you guess what the joke will be?

12:29 PM  
Blogger kristina said...

take care of yourself and very glad to hear things are all right. keep writing---happy new year to you & yours!

3:12 PM  
Anonymous Anonymous said...

Hi Estee,
Just checking out your blog and web site as my dad, Jerry, sent me your recent article. I work with an autistic boy in grade 6. I would so much like to get your opinions about things regarding him. I have found that the so-called specialists in the school division don't really have experience or that as you write, they want to cure the autistic person. In the school setting it is easier to have the child fit into what is the normal than to go with the flow of the child and let them experience the world as they know it. Hope to talk with you soon, Your cousin, Marlene

5:39 PM  
Blogger kyra said...

oh my goodness, estee! i'm so sorry you endured a health scare. to say that would have made me terrified of missing out on fluffy's life would be an understatement of significant magnitude. unfortunately, passing panics of dying early pop into my mind all too often.

so, i'm SO relieved to hear you are well. more than well, calm, relaxed, happy, working on your book and spending time with that beautiful boy of yours.

blessings to you all.

happy new year!

7:40 PM  
Anonymous -Brian- said...

Yes, the scientific community has become quite notorious for scaring people, especially when it comes to health issues.

Whether a person is told that they might have a certain "condition" (that might in very rare cases be fatal), or parents are told that a child of theirs has a "devastating" disorder known as "autism", that is the negative influence of science, these days.

Will it ever be reversed--that is, will science ever be able to tell us the positives of life, instead of the negatives--and how much "joy" there really is in the human being, despite any "label" or "diagnosis"?

Problems are bound to arise, but the joy is still there, nontheless, and the joy will continue year after year....

9:34 PM  
Blogger Alyric said...

Glad to hear that reports of your ill health have been exaggerated (misquoting Mark Twain). Best to you and my thanks for your Hub presentation work:)

4:53 PM  
Blogger DJ said...

I was very happy to see this entry since you've echoes things I've believed for so long! Bless you and Adam...you are both awesome! I'm sorry to hear of the health scare but am glad to know that everything is ok in that regard. Take care fo yourself. You are such a blessing to the autism community. :^)

3:49 PM  

Post a Comment

Links to this post:

Create a Link

<< Home