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Location: Toronto, Ontario, Canada

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

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

Monday, February 13, 2006

 

Autism Kisses

Remember that nanny I was telling you about in my previous LOVE post? Well, she took off. Adam was sick yesterday with the croup and stopped breathing and she just LEFT. I couldn’t believe it. Good riddance, I guess. The good news is Adam is better today, taking Prednisone and breathing a lot easier. It was a scary day yesterday.

My heart breaks. It is because of Adam that she left. For him, my heart gets all ripped up. I don’t care about her. I care about him, and all the people who come in his life and those who don’t stay because they can’t handle “having to play” with him. I know, I know…what did I do keeping a girl like that? A favour to my other part-time, 15-year loyal nanny? Partly. Hope in a human being, always. I always think that people will “come around.”

I should have listened to my instinct. It’s always too damn right. Never fails. Every time I turn my back on instinct, I screw up. I was right. Should have listened to Blink.

Blink, written by Malcolm Gladwell, a University of Toronto history grad, quotes Simon Baron-Cohen’s Mind-Blindness theory in his arguments about intuition. He notes that people with autism cannot “read” minds in the important first-impression stage and are at a disadvantage where intuition is concerned, thereby losing an edge the rest of us have to make split second, profitable decisions (yes, it’s all about BUZINESS -- at least business people seem to be the book's primary audience). People with autism claim that “real-time” mind and body reading are difficult, but are hardly incapable of understanding others. I am always interested in how people with autism claim that they can think of their responses long after a conversation – how the processing takes longer. I suppose there are millisecond clues that are processed unknowingly by me…those clues we can’t break down into little bits, and call intuition. All I can do to perhaps come close to understanding that difficulty are those times when I am stumped by a person’s words – all those witty responses and come-backs I could have said long after the moment is over. Yet I hardly think that experience does the ACTUAL autistic experience justice.

Anyway, my heart will mend. No matter how hard I try to find the right people to encircle Adam, to be part of his world, I am guarded. I only want positive people around him, but I cannot always thwart off the negative, hurtful ones. I cannot always be around.

On the upside, I have written little about the people who do love him, from within and out of the family. Laura, his wonderful therapist who has gone on this journey with me and who is the most wonderful part of Adam’s expanding life; Morgan, Adam’s loving shadow at school who has unshattering belief in Adam’s abilities; Bianca, who is leaving us to have a baby, but who has stood by Adam and felt the hurt along with me; Ellen, Adam’s OT who has been more `right’ about Adam than any psychologist or doctor or “expert”; Stacy, who works with Adam once a week at OT with an unending white smile and more recently, Leslie, who has brought her lovely, calm and positive attitude into Adam’s life and is helping to shape his programs; to Flor, who stays by Adam and who plainly loves him; to Jaclyn who has taught Adam how to “bend his knees”; to Paula and Nancy, his teachers at Nursery School who always go the extra mile for Adam; to my friends who pass no intrinsic judgment and ask Adam to come over and play; to his music teachers who accept him for who he is; to the Snoezelen people who let him relax and just be; to grandparents who take this journey with Adam and I daily; and of course to my immediate family who deal with it all so lovingly. To all of you, a hearty thank you.

I talk too little of these people who make our lives wonderful and hopeful every single day. Without all of you, my optimism and strength would not be possible.

Tomorrow is Valentine’s Day. Hubby is skiing with daughter in Whistler. I am planning a sweet dinner (Pickle Barrel with candles?) with my other true love and reason for being. I didn’t budge all day from Adam’s side yesterday and in between his wheezes for air, I realized again how large love is and how my little heart can hardly contain it. Like today, Adam will surely lean into me tomorrow and give me his little kiss – for his "senses" or for love, I’ll take his “autism kisses” any day.

10 Comments:

Blogger Christine said...

I'm so glad to hear that Adam is doing better!

2:59 PM  
Blogger Kristina Chew said...

Happy Heart Day to both of you! Charlie was on prednisone too----- Too bad about the nanny's abrupt departure, but it sounds as if sooner was better.

3:43 PM  
Blogger Zilari said...

I would agree that my main communication barrier with others is related to a sort of "processing delay". Often it takes me quite a bit of algorithmic brain-cranking in order to simply determine the context in which a particular conversation would make most sense. I will sometimes realize what people meant in a conversation months or even years after the conversation actually happened. This also happens with song lyrics (in which I figure out what the heck the singer was saying years after I heard the song last) and even with academic information. I think some of it has to do with (a) having a good long-term memory, which is common in autistics, and (b) having to wait until there are enough pieces of information available to fill in the contextual gaps that were causing a lack of understanding. For instance, I have a piece of hardware on my desk at work. I got it from another employee who left. He tried to tell me what it was for before leaving, but I really couldn't understand it, and just basically used it like a decoration for almost a year! The other day, though, I was reading a document and suddenly I realized that the text was describing this exact THING I had on my desk! I was very happy to realize this...I couldn't have understood the device if I'd only seen it, or if I'd only read about it, but once I'd done both it made total sense.

10:30 PM  
Anonymous Anonymous said...

You are a brilliant woman, but trust those instincts. Its too easy to fall into the well of hope in other people and get hurt.Go back and think very hard about the kindergarten year.For your sake. For Adam's sake."All that glisters is not gold".Your son is golden, though.

8:20 PM  
Blogger Estee Klar-Wolfond said...

I've thought tons about it. I've been burned already...trust me...these are the every day experiences of dealing with a bigotted society in regards to "disability."

Sorry, I will remain the optimist. It is tenacity, determination and utter belief in oneself and one's child that will see us through.

I just hope I can impart some of this to you. If you read my blog, it is all about TRUSTING YOU INSTINCT.

School will be a challenge, but I have no fear...just worry that likes to seep in like dirty garbage.

Stay positive and stay strong. This is the only way things can be accomplished. The sum of Adam's life exists far beyond Kindergarten.

Estee

9:44 PM  
Anonymous Anonymous said...

The sum of Adam's life exists far beyond kindergarten of course but neither you nor he deserve or need extra grief. I can see that your blog is about trusting your instinct. We trusted ours and fell into a trap. I am trying to say that beyond your instinct, you will have to trust Adam's shadow to the fullest extent because she or he will be his buffer between what you have been told about the school, what you have seen with your eyes, and what actually takes place.It will be less about any bigotted responses and more about broken promises. You have lived your share of broken promises.We can tell that both you and your son are capable of great things.We are not worried about your end of the bargain.Our wish is that your experience will be a good one but you will have to be on them like a hawk, day in and day out.Adam can trust that you will.It is an exhausting job.We wish you strength and don't ever be afraid to give them hell if you have to. Good Lord, this is the woman who stood up to Buxbaum.Lady, you will be just fine.(FYI--we know you have "inside" info on the place. We used to be insiders too but we do not have your gumption.)

7:24 AM  
Blogger Estee Klar-Wolfond said...

Time to reveal your cards and come out of the bushes of anonmity. You seem to know me.
If you do, you will know that Adam's schooling, and learning and working with a team of people that I lead, IS my full-time job.

I am not too fond of people who like to "remain anonymous" when they seem to talk about me like my next door neighbour.

Thanks, but no thanks.

8:39 AM  
Blogger SquareGirl said...

Your instincts seem so right on Estee! I have to say that my experiences are similar to zilari's...I often have an experience where somewhere long after something ocured (days, weeks, months, years), I'll realize, "that's what that/he/she/etc meant!" I have always been an avid reader and that helps me.
So sorry to hear about Adam's loss, but the fact that he is surrounded by so many loving people who are pulling for him and you is priceless! I have always been grateful to be surrounded by people who really love me for who I am.

I love your posts and your committment to remaining open-minded to discover the "truth".

1:52 PM  
Blogger Estee Klar-Wolfond said...

Thanks, Squaregirl.

Adam has a group of people who have been with us for years, thankfully. Such loyalty is irreplacable. I wanted to mention the people who have stuck by us...there are many I have fired as a result of their view of Adam as a pathology. There is no room in life, in Adam's development, for such people.

2:48 PM  
Anonymous Anonymous said...

Progress comes in stages. Keep smiling!!

Scorpion

4:50 PM  

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