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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

Saturday, January 06, 2007

 

Celebrating Autistic Children Every Day

For all the parents who work so hard to provide the best opportunities for their children, who love them, who have undergone confusion and fear, who choose to live with joy and pride, who want a world of tolerance and acceptance where our children can be educated and contribute to society, and whose children may need further accomodations in adulthood, I propose we talk honestly while protecting our children's best interests and self-esteem.

"Joy doesn't come without struggle," I wrote when I chose The Joy of Autism. Joy is a choice, and the joy my child continues to bring me is the engine behind everything. These pictures reflect our journey with autism every day. Adam trying to kick a soccer ball after repeating over and over again (and thank goodness for Kevin of Sportball who convinced us to stay when I was about to leave the first day when all the kids were staring at him. He encouraged me, said Adam was doing great and even if he had to stay and watch on the sidelines that would be a good thing. Well, it was, and Adam began to learn soccer), his love of books and reading, his joy of watching the sand drip through his fingers, his innate curiousity, his fourth birthday celebration last April, his joy of dance at his cousin's Batmitzvah. His smile, his soul...is everthing. Thank God for him. I do not share the sentiments in The Autism Every Day video as its director Thierry suggests. I had my moments, early on with autism when I didn't understand it as much as I do today, when I was angry and confused, but I never thought of taking Adam's life because of autism. Adam is my life, my world, my everything -- my autism every day.

Even if you have a bad day, there are a multiude of others that make us content and happy. What are your joyful moments? For all the worry and work you do, name those stupendous, maybe subtle moments that elate you, for the achievements of our children are momentous occasions!! What price do we, and our children, pay by not celebrating them?








15 Comments:

Anonymous Anonymous said...

Be back later after I've a think. [glad [sort of] that you're 'static' enough to dig out those photos - fabulous smile and get those eyes!]
Cheers

12:35 PM  
Blogger Kristina Chew said...

I've kept a journal since Charlie was a baby and no matter how tough the day, I always have one good---one happy---one joyous moment to write, same as the ones you document here.

12:58 PM  
Anonymous Anonymous said...

So what exactly is your point? I enjoy my severely autistic son every day but I am also cognizant of the realities of his autistic condition and do not try to hide them from the world. You express your views on this blog site. A different perspective is offered in Autism Every Day. Personally I am happy to see parents speaking out and describing some of the realities their CHILDREN have to deal with now and when their parents are gone.


http://autisminnb.blogspot.com/

1:13 PM  
Blogger Estee Klar-Wolfond said...

Autism Reality:

I might reverse the question and ask you: what part of the point don’t you get? Expressing views without harming children is what I’m after. Raising the esteem in all autistic children is what I’m after.

Autism Every Day is not “balanced” or “true” or “real” in the sense that it is a staged video that coerced kids into meltdowns (not to mention the quick editing and dark music). It’s not to say that there isn’t a bit of “truth” therein. All GREAT propaganda contains elements of truth. As a lawyer, you should know that (particularly if you’ve studied Nazi propaganda films).

Finally, one can state challenges without stigmatizing people. There is a huge difference.

The reality of autism is that our kids need services and accommodations that befit the individual, not a blanket therapy – or a one-size-fits-all approach. The evidence and the science is noting this more and more.

You keep proclaiming on your own blog that any autistic who can write or speak, or type on the computer is a “savant.” Your idea about autism is so ridiculous and discriminatory – of course autistics can learn to read and write – it does not make them “high” functioning necessarily. What are you trying to say: that all autistics must be disasters? If they can write they are not autistic? Ridiculous. What it means is that they have to learn in different ways. Reading and writing does not constitute savantism – not in the general population and not in autism. It shows you’ve not done your homework and haven’t kept up to date with the science.

All autistics have a right to be accomodated. You seem to refuse to accept that autism represents itself so differently in every person. You can still advocate for services without having to take this out-dated and unscientific "stance." Some autistic people have many more needs than others, that is very true. Autism is not a reflection of lesser intelligence. Rather, it is a reflection of different challenges. I would argue that I find autism more challenging because of lack of understanding, accommodation and stigma.. Others might see it differently. I’m more interested in these discussions.

My son is autistic - the appearance of "his" autism is changing over time. He was diagnosed moderate, but I don't put much weight in that since it was made when he was only 18 months of age. He is intelligent. He can type. He struggles with language, but it is coming and I’m confident he will communicate soon – typing or talking. If you look at the emerging science and understanding of autism, you will know that shallow representations of autism as high and low functioning do not answer our need to educate and accommodate this complicated condition. Living with autism, and learning how my son learns and experiences the world has filled me with incredible optimism and given me a new perspective on dis-ability entirely. My work with Dr. Baum and "severely" disabled individuals has also enlightened me about the abilities in all individuals and our need to respect them and give them a chance to be...human - not regarded as less than.

No one is trying to “hide” from the challenges of autism. I often reference our challenges herein. BUT, our children face such a harsh world, that it is shocking for me to see that you don’t understand why our children need to be celebrated. Autistic people are here online expressing their daily and physical needs all the time. Are you ignoring them? Why do YOU need so much pity? Why can’t we make a drive to bettering our understanding of autism without stigma? Why can’t we make a drive to respect the abilities of all the dis-abled, so that we can tap the potential and improve the education they deserve? I can’t imagine you don’t want a better world for your son to live in. I’m glad to hear you enjoy him.

2:15 PM  
Blogger Estee Klar-Wolfond said...

It is also shocking, I might add, that as a parent of an autistic child, you do not listen to the autistic people who find this video not only misrepresentative of autism, but also find this video incredibly offensive.

Only in autism does this happen: where the very people the charity seeks to "help" are not allowed to have a voice or participate. This is an important point that I missed in the above response, but that I keep posting.

Yet, it seems that Autism Reality NB is invested in something and does not wish to accept reality.

2:22 PM  
Blogger Kassiane said...

One of the most joyful moments when I was working with K, who I used to blog about more (before I was always getting sick and not blogging...) was when he demonstrated he CAN read.

This child had a spoken vocabulary of 100 words on a 'good' day. And he could read every one of them. He knew his mom would be excited, so we showed her, and she was crying and hugging me and hugging him and then SHE started flapping because she wasn't sure what to do between her autistic kid who wanted more words and the autistic tutor who prefers very tight hugs.

Joy of autism...and neither he nor I are savants. Just regular autistic people who have mastered reading.

4:02 PM  
Anonymous Ms. Clark said...

Thanks for sharing the photos, Estee. He's so beautiful and so fine.

4:03 PM  
Blogger Kevin C. said...

Estee said; "It is also shocking, I might add, that as a parent of an autistic child, you do not listen to the autistic people who find this video not only misrepresentative of autism, but also find this video incredibly offensive. "

"Autism Every Day is not “balanced” or “true” or “real” in the sense that it is a staged video that coerced kids into meltdowns (not to mention the quick editing and dark music). "

Staged?

If there was an MS "Every Day" video, do you think it should show people working out on a Nautilus machine or jogging?

If there was an Alzheimer's "Every Day" video, do you think it should show people playing chess, doing crossword puzzles or appearing on Jeopardy?

If there was a Diabetes "Every Day" video, do you think it should show thin people eating candy bars and washing them down with 20 ounce Pepsi's?

In my opinion, the Autism Every day video is a true representation of what many families go through "Every Day" and until you have walked a mile in thier shoes...you should stop judging them!

1:27 AM  
Blogger Estee Klar-Wolfond said...

I don't think in a diabete's video, parents will talk about kiling their child. Also, at the diabetes events I attend, diabetics take part int he overall message and presentation. I don't think Autism Speaks likes to allow autistic people to speak. There is no question that a parent's struggle in coping with autism should be conveyed, however, the insensitivity of this video is causing bias and prejudice in school system by portraying all autistics as out-of-control, dangerous and hopeless, and not showing that with sensitivity, understanding and paitence, these children can be reached, taught and contribute meaninfully to our society.

Finally, the main point in all of this, is that this video is offensive the very population it seeks to represent. If this happend to an ethnic community, there would be outrage. So, as parents, we have to be senstive to these portrayls. It doesn't mean that parents should be ingnored or seek support, however, isn't the main group we are concerned about here, autistic people?

A direct quote in this video justifies murder-suicide but for the existence for the "normal" child in that mother's life. While my son was diagnosed three years ago, and I have been living with autism every day since that time, I can't imagine how a parent of a newly diagnosed child would feel after seeing the devastating portrayl of life that this video presents.

8:11 AM  
Blogger Estee Klar-Wolfond said...

I am writing quickly.. sorry for all the typos here..

Further, after getting past the initial heartbreak, I have chosen to accept that my son is different and to focus on getting society and those around us to look at Adam in the most positive light.

8:17 AM  
Anonymous Anonymous said...

Kevin C.

There is a reason you don't see a "Diabetes Everyday" or "Alzheimers Everyday". People with diabetes and alzheimers are consider persons. Those with autism are seen by most as non-persons and therefore we are denied the respect and dignity to speak for ourselves.

Christschool

8:47 AM  
Blogger r.b. said...

I remember being so tired of the crap about autism that I actually was looking for positive posts. I think I fed "the joy of autism" into the search engine and came up with your blog. How lucky for me!!

I also liked the book, "The Gift of Dyslexia", which tells the good side. Autism actually brings with it gifts.

9:08 AM  
Anonymous Anonymous said...

Tantrums staged? You have got to be joking!

12:17 PM  
Blogger Estee Klar-Wolfond said...

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work."

See reference at http://ballastexistenz.autistics.org/?p=159

Also, the director was seen on CBS television stating same.

The point is: you can demonize autism or you can show autism -- it's good days and bad. You can show parent's struggles and you can show autistic's struggles. However, when parents only want to be heard at the exclusion of autisitc people, whose needs we're trying to address here, right, well, that becomes a slanted view.

By the comments online alone, there are different thoughts and feelings about the video that MUST be addressed in order to be fair.

BTW, in order to have a civilized discussion, it is good to reveal who you are. There is nothing wrong in stating your viewpoint, and this is why we have a comments section. By expressing these opposing views, perhaps we can better embrace all views so that we can all do better and support each other.

I simply feel very strongly that as my son is autistic, I want the voice of autistics to be heard and respected. This was not done in this video and also, is not a balanced representation of autism humanized.

1:47 PM  
Anonymous kyra said...

oh, estee! i love these photos!

and yes, i'm for speaking honestly about our experience as parents raising children on the spectrum while remaining firmly grounded in our love and respect for our wonderful children and celebrating the joy and learning they bring. fluffy brings me joy every single day!

i'm sorry the autism speaks video was done poorly. i am. i think there needs to be a place for parents who feel unsupported, overwhelmed, frightened, and who are, unfortunately, uninformed about the abilities and awareness their children hold to speak honestly about that, too. all voices need to be heard but heard fairly and truthfully without hysteria or hype.

the autistics who were offended need to be heard and respected and yes, immediately be brought into the whole conversation, of course! but they can not speak for anyone else, can they? their experience can't trump anothers.

6:00 PM  

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