Ave atque Vale, Change.org

categories: acceptance, Advocacy, Education, social justice

Published July 31, 2009 @ 12:33AM PT

This is my last post here at the autism blog at Change.org. I relate why more towards the end. As this is my final word here, I wanted to focus on a topic that Dora and I think is important to note in writing about autism and disability, the need for critical thinking.

You can now find me at my website kristinachew.com and my new blog, We Go With Him.

Once upon a time I had a very different life.

For one thing, I taught freshman composition at a large Catholic university here in New Jersey (and, briefly, for another prominent institution of higher learning here). I was trained to teach Classics---the culture and history of the ancient Greeks and Romans---and to translate ancient Greek and Latin. I took the composition jobs because I needed to: My husband and I had just packed up and moved back to Jim's native New Jersey from St. Louis, to find the best education for our son Charlie. I first found a 0.333 position teaching Latin at a local public high school and then phoned in to say I wouldn't be able to take it, as I'd gotten a part-time position teaching composition (with benefits).

The students had to write a research essay and this meant I always had to devote one class to "Using Internet Sources." I'd go through the differences between .com, .org, .edu, .info and then show how you can't always judge a website by its "dot whatever." Like many professors, I did not allow students to use Wikipedia as a source on their papers (I still don't). We talked about peer-reviewed journals and used the library's numerous electronic databases. Students ended up with lists of bibliographical sources, URLs, and maybe the printed-out full text of a few articles.

Most of them didn't realize, that their real work began at this point: It's one thing to have a pile of research. It's another thing to read through all of it. And it's yet another to evaluate all that information, to synthesize and analyze and go beyond one's gut reactions and what just "made sense" or "seemed right." Especially when you encounter a source that makes an argument contrary to what you are convinced is right, you must demonstrate that you can, thoughtfully and carefully, evaluate the claims on their own terms, and turn a critical eye on your own views and even your own experience. You must look at the language the writer uses and at how they use the words: Is there rhetoric meant to attract a reader's sympathy? How does the writer use her or his sources---does she or he clearly and accurately represent their theses? Is there irony or obfuscation? You must go and look up the original sources rather than relying only on second- or third-party opinions.

What I often found very difficult to explain to my students was the difference between writing an essay using such critical thinking skills, and more of a response or reaction paper. Very often, students struggled to make arguments based on a careful synthesis of the ideas in their sources. They made arguments that were more akin to opinions and plugged in the sources only if they clearly supported their points.

In many discussions about autism, research, and science, on the Internet and elsewhere, the same sort of thing happens for reasons that are more than understandable.

As of June, I've been blogging about autism every day for four years. I started writing daily accounts of our son Charlie on a blog called My Son Has Autism that became Autismland. I shied away from writing about controversies. But when I started writing Autism Vox and focused more on science and health topics, I quickly found myself blogging about one "hot topic"---vaccines---after another. While I've tried to focus more on issues of education and policy here at Change.org, those "hot topics" have inevitably come up as one follows the latest in the media about autism. There is a lot---an Internet's worth---of information out there. It's become almost too easy to compile lists of sources and links and URLs, to read blog posts and Tweets and articles about all those "hot topics" and to pass them on to support the position one is taking. I know; I do it myself, though I certainly try to evaluate science and other sources for what they say.

And often in the heat of the moment, when we're trying to make a point---that something "caused autism" in a child or that a certain "treatment" is producing miraculous results---we just provide the information without sifting through and analyzing, and reflecting, and discerning, where our emotions are seeping into our views. When you're writing in the ever-changing environment of the Internet and when you're a parent honestly desperate to find something to help your child and to find support for why you're doing the crazy things you're doing, information that says just what you want it to say is hard to resist.

I know. Like many parents, I once tried to recover my son from autism, as I wrote in one my first posts here on Change.org. It's not easy to apply your critical thinking skills in the press of life, when you've just dragged yourself and your child back into the house after snatching him out of the path of a car in a McDonalds parking lot and been upbraided by random strangers who were in no mood to hear your explanation of how you don't know why your son started knocking his head at the top of the tube slide in the McPlayPlace because he can't talk and it wasn't a moment to pull out the PECS book.

Charlie doesn't do that sort of thing anymore (though we do go to McDonalds when he asks for it and, occasionally, to a McPlayPlace). He can somewhat tell us, in various ways (not always words) what's bothering him, and Jim and I have learned to understand his communications much better by spending so much time with him. It's from all that time, from watching Charlie, that we've learned what treatments, therapies, and educational/teaching methods seem to work best for him.

Parenting a child like Charlie means that you have to use your critical thinking skills. As my friend Shannon writes, you have to be able to identify and avoid autism cults. You've got to get your strategy together to advocate for your child at IEP meetings and get the school district to do the right thing for your child. You've go to be able to analyze, in a split second, why your child just got so upset in a place that he likes: Hormones? Stomachache? Too much noise? Bad day at school? Something we parents (with all good intentions) said or did?

I often say, figuring out how to take care of Charlie has been the biggest challenge I've ever faced, more than any exam I ever had to take in college or graduate school. Writing about this journey of Jim's and my life with Charlie has been the bread and butter of my blogging; it's certainly the basis for my very-much-in-progress-book about Charlie.

This is my last post on the autism blog at Change.org. In time this blog will morph into one about disability and disability rights, and I'm very pleased at this future transformation. As Charlie has gotten older, more and more of the issues that affect him---issues of employment, housing, transportation, support staff---overlap with disability issues more generally. Dora's and my posts will remain on Change.org and be integrated in the new blog. I think the almost eight months of blogging that we've done here comprise a nice oeuvre, a small archive of articles about key issues pertaining to autism and disability, from the perspectives of a self-advocate and of a parent. I have been particularly happy about the blog when Dora and I ended up posting on the same article (sometimes on the same day), but with our different perspectives.

I will still be blogging over at my website, kristinachew.com. My new blog is called We Go With Him, and I've included sections on my site with links to my writing on various topics here and on Autism Vox, as well as a section about teaching Charlie. I'm going to let We Go With Him evolve as I write it. Certainly some posts will chronicle our continue efforts to find a school for Charlie. While still following all those "hot topics" about autism and occasionally commenting on them (I just can't resist), I'll most likely be focusing on writing about being on the road with Charlie.

Thank you so very much for your readership, for letting us know what you think and for your support, which has meant a great deal. Back in December when I started writing this blog, Charlie was struggling mightily and Jim and I found ourselves facing some hard and terrible questions. Things have been looking up on the docks and Charlie has been well, very well, and we've been having a wonderful summer.

Life on the long road with Charlie is not easy, most of all for him. Life with Charlie is always very, very good for Jim and me because we have each other, because Charlie is with us, and because we're one tight team of three.

From our post on the autismfront to yours, we'll be seeing you.

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Comments (23)

Thank you for your voice and for sharing your opinions in a way that allows space for someone else's thoughts.

I am always thankful for your words and your wisdom.

Fondly-

Jen

Posted by Jenny Alice on 07/31/2009 @ 01:59AM PT
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Your blog has always been a guide and comfort to me as I struggle through the first year of what it means to be the father of an autistic child. I thank you for your wisdom and generosity and look forward to reading your new blog. Best of luck, Vincent

Posted by Vincent Precht on 07/31/2009 @ 04:27AM PT
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We'll miss you here, but I'll follow you around :-) See you at the new blogs!

Posted by Jen Niebler on 07/31/2009 @ 05:14AM PT
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Thank you for everything. I will continue to look forward to your wisdom, grace, and balance. And thanks especially for the reminder that critical thinking is essential, even when -- perhaps especially when -- in the storm of strong emotions.

Posted by Andrew Dell'Antonio on 07/31/2009 @ 05:43AM PT
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Kristina,

It's been a joy and honor to get to know you (and Jim and Charlie) through your writing and our personal correspondence. You can bet I'll keep following you on your road with Charlie.

Brett

Posted by Brett Miller on 07/31/2009 @ 06:44AM PT
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Wow, I'm really surprised! You've introduced me to a whole new world of critical thinking about autism - thanks for that. I hope the new life of the reconfigured blog is as vibrant as the old.

Posted by Joshua Levy on 07/31/2009 @ 07:21AM PT
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I've quietly enjoyed reading many of your posts, and I think the "Doing It Yourself" section of your new site has great promise. As one of your recent posts spoke on, there is so much these kids can learn outside of the classroom on their own and with help ("news at 11"), even when traditional modes of observation and evaluation would suggest that teaching is hopeless and progress unimaginable. I think that high expectation can-do attitude needs to be reinforced more, and is a critical message both in supporting the need for appropriate and diverse lifelong educational opportunities, and in nurturing personal growth at home.

I've also enjoyed the mixture of adult issues/parenting posts on Change.org, as there is so much unfinished business that will affect my child sooner than I, or the community, will be ready for - so I am sorry to see that convenience end. Thank you also for your advocacy efforts in education, housing, etc, and best wishes on your new project.

Posted by John Ruch on 07/31/2009 @ 08:08AM PT
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Thank you for commenting on that part of the site. The whole idea of "doing it yourself" has been really important to us for a long time; I'm one of those people who feels better when I'm busy and doing things. And certainly there's a huge payoff in being able to do things on one's own; it expands everyone's possibilities.

Dora's going to be blogging occasionally at the Autistic Self-Advocacy Network's Change.org blog:

http://www.change.org/autisticadvocacy/blog

And I think I'm going to be inclined to refer to her posts......

Posted by Kristina Chew on 07/31/2009 @ 02:30PM PT
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Hope the transition to your new blog goes well :)

Posted by Casdok Shrek on 07/31/2009 @ 08:09AM PT
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Thanks Kristina--nothing is so permanent as change.

Keep on blogging--and enjoy the rest of your summer!

Posted by Toms Mom on 07/31/2009 @ 08:35AM PT
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A door closes and another opens.

Many thanks to you and Dora for your time, energy and, most of all, your thoughts and ideas.

"You go with him", and I suspect we'll go with you ... along to your new writing home.

Respect and regards.

Posted by Regina Claypool-Frey on 07/31/2009 @ 09:26AM PT
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Thanks so much for being here and sharing, Kristina. I've just gone over and subscribed to the new blog. You're a hard woman to keep up with, but worth it! :)

Posted by Mary P Jones on 07/31/2009 @ 11:29AM PT
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Thank you so so very much to everyone---for sure one of the best things about blogging is getting to "know" so many people and to know there's a whole community out there. Thank you for following me to my new blog which I hope I'll be writing at for the long term!

Thanks again, plus, several times over.

Posted by Kristina Chew on 07/31/2009 @ 02:09PM PT
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I'm glad you're not giving up blogging because you sure do have a lot of interesting things to say and I enjoy reading them.

Posted by Shondolyn (Synesthesia) Gibson on 07/31/2009 @ 04:44PM PT
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I followed you through one move and I'll follow you through another. No other writer captures both the joys of parenting and the science behind autism quite like you do, Kristina. I'm also looking forward to the change in this space. Do you know if the name will change?

Posted by Ali ... on 07/31/2009 @ 06:05PM PT
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One last Q: What happens to the various petitions which are still open for signature?

Is change.org going to do anything substantive with these now that it's discontinuing the "autism" blog? I hope so - it would be a shame to let the hope and intent of the signers go to waste.

Posted by Regina Claypool-Frey on 07/31/2009 @ 06:38PM PT
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Kristina, I haven't had the time to follow you in the past few months because I have been so busy with life as it is for us right now, but I am glad I caught this post tonight. I really like what you have to say.. I have been hoping for more parents of children with autism to say these kinds of things. I wish you the best in your new blogging adventures and hope to catch up with you again soon.

Posted by L A on 08/01/2009 @ 08:50PM PT
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Vale atque bona fortuna, Dr. Chew.

Posted by Twyla Ramos on 08/01/2009 @ 10:30PM PT
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i'll just keep following you, kristina! many blessings on this new leg of your on-going adventure. i certainly relate to the shifts and changes. i see things differently now than when i began blogging 4 1/2 years ago. it's quite an education! sending xx

Posted by Kyra Anderson on 08/02/2009 @ 02:04PM PT
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Come to think of it, I was wondering why there wasn't a Disabilities cause here.

Aloha, or as a once and now future Bay Arean, "Have a nice day!"

Posted by Mark Romoser on 08/04/2009 @ 02:52PM PT
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Dang, now I gotta fix your link on my blog. lol

I am happy to see you're not going to let the turkeys get you down. ;) See you in your new home!!

Posted by Moi Bloggg on 09/04/2009 @ 08:33AM PT
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I take a break for a few months and come back to a good-bye? :0 Finally settled in the new place in Texas enough to start being "social" again, I decided to check in (and create a new account since I've misplaced the password for my old one :) ).

Good to hear you and yours have had a good summer!

Great post, and good luck on the new blog. Though I haven't read the blog here in a while I could see months back how your and Dora's posts were a foundation for a more general disabilities, it was showing up more and more within your posts and the Comments, too. I'd also like to add that..

"... why your child just got so upset in a place that he likes: Hormones? Stomachache? Too much noise? Bad day at school? Something we parents (with all good intentions) said or did?"

You also need to learn to live with occasionally being wrong, to learn from that and move forward without beating your self up emotionally.

Posted by Dwight F on 09/26/2009 @ 05:07AM PT
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BTW, yes of course I'm going to follow you on your new blog. :)

Posted by Dwight F on 09/26/2009 @ 05:11AM PT
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Author

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.