acceptance
Ave atque Vale, Change.org
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.
Sweet Sibling Short
Published July 30, 2009 @ 04:00PM PT
The Aspergers Association of New England (AANE) has a documentary short posted on their site called My Brother Tom. The film was made by Kaz Gamble about, well, his brother Tom (strange, I know). The film is also about acceptance, understanding, the importance of diagnosis, and insight both into a healthy sibling point of view and into issues specific to that generation of individuals who were not diagnosed until well into adulthood. Most importantly though, it's a sweet, fun film to watch.
Here's the trailer from YouTube.
You can view the full film on AANE's site.
Camp Charlie
Published July 30, 2009 @ 12:39AM PT
That's how Jim and I have been characterizing our summer. At first I saw Camp Charlie as a camp with one camper (Charlie) and two counselors (Jim and me), hurrying around in a somewhat harried manner. As July comes to an end, I've felt that it's become a camp with three campers on a full schedule of:
(1) Morning: Academic time (Charlie goes to Extended School Year (ESY), Jim and I sit in front of our respective computers and get as much done as we can).
(2) Afternoon: Recreation (a long bike ride, sometimes a swim + gym time); quiet time (in which I try to sneak in typing practice and other "edutainment" between video-watching on the computer); out-in-the-community time (often visiting various stores); canoeing (Jim's latest addition to his and Charlie's roster of outdoor pursuits)
(3) Evening activities: Shorter bike ride and/or basketball
Back in June, I was anticipating that this was going to be a tough summer. Charlie's school year ended with a stack of incident reports. He'd already been having a difficult and difficult-er time as the school year progressed and Jim and I were called into a district-requested IEP meeting in June. That meeting was cancelled by the district and rescheduled for July at which time we found ourselves back on the road to find Charlie a school.
We've been making the rounds visiting schools, reviewing Charlie's records in the school district offices, setting up appointments, having Charlie observed.
Many of you have been on this road before and your support suggestions have been more than welcomed. Just knowing you're all out there has made a tremendous difference: I'm heartened not only when I read your comments here. When we're at the table talking to the school district and the tape recorder is running, it means a great deal to know that you're not alone, that your child is one among many children for whom our educational system is not working. And that means, we need to change the system, change what is going on in the classroom and in the schools, and figure out how to create an appropriate education and accommodations for students with disabilities.
(As many people have pointed out to me, I should watch what I'm writing here about my son's school situation; school districts, consultants hired by the school districts, and others can of course read this. So I'll leave it at that.)
But back to Camp Charlie.
PDA Yay
Published July 27, 2009 @ 04:58PM PT
An article from the Star Tribune (MN) iPods may help Asperger's kids navigate life mostly highlights the use of iPods for social prompts (interesting correlation perhaps with the Scientific American story on verbal prompts for AS which deserves a post all its own). It may be fair to expand the scope of usefulness to Personal Digital Assistants (PDAs), prompts, and the autistic spectrum in general.
A PDA with calendar, tasks, and reminder capabilities can be great for those of us with little sense of time. Many organizational programs have graphical capabilities for people who don't resonate well with numbers or words. Notes, tasks, and reminders also can also substitute for short term memory. The awesomeness of PDAs with a built in GPS is invaluable for those of us with a tendency to confuse easily, especially in new places. PDAs that take pictures can help with memory, navigation, orienting in new places, all sorts of things. And PDA applications with favorite sights, sounds, and games can soothe the nerves. Best of all for anyone with executive function issues is that there is only one does-it-all device to keep track of, not a ton of separate calendars, notebooks, devices, etc. to lose, forget about, and curse.
As a long-time PDA user (as soon as they became marginally affordable over a decade ago), I am quite serious when I tell people my executive function skills are present not in my brain, but in my PDA.
The obvious point here is that a PDA can be an invaluable piece of assistive technology for autism-specific "stuff." Plus, PDAs are mainstream, even "cool," so there's no weird looks for using one.
The less obvious point is that it can be beneficial to think about what sort of tool can give a person a skill they don't otherwise have, rather than pouring energy into trying to find a way to make that person have the skill unassisted. What actually works is more important than appearances.
There Goes Yet Another Autism Myth
Published July 25, 2009 @ 12:37AM PT
There are so many autism myths floating around out there that debunking them often seems a constant aspect of advocating about autism. (And look out, too, for those autism cults.)
One myth that always rankles me is that autistic children don't change and that they can't; that a child will always be a two-year-old inside even when he is six feet tall. It is the case that it's often not easy for my son to deal with a new situation or a change in circumstances. This leads to some occasionally interesting moments when the inevitable new situation or change occurs (his favorite diner is closed for renovations; there's a different bus driver or new aide; he's tall enough to reach the top shelf of the cabinet). While Charlie often expresses maximum hesitancy to plunge into the new, he is not entirely resistant to change, not at all. What's tricky to ascertain is what Jim calls "the lag," the time between when Charlie realizes there's a change or something new going on, and when he assents to it and accepts it.
For quite a long time, Charlie's maintained a collection of CD and DVD cases and some CDs and DVDs. "Some" because many of the CDs and DVDs have been discarded; most have been so smudged and scratched that they are not playable; more than a few were secreted away down a certain crack in the stairs. There were two Beatles albums along with some Barney ones, some Disney ones, a (truth be told) Teletubbies album cover, and a smattering of jazz and blues and the Byrds. Charlie would spread them all out or stack them into piles of indeterminable organization and look at them absorbedly; at moments of extreme agitation, everything went flying.
After the most recent instance of the latter, I gathered everything up and put them into a big white trash bag. I heard the voice of some consultant whispering in my ear about the "inappropriateness" of Charlie "stimming" on all those things and how letting him do it would be (was clearly) an antecedent for "behaviors" and what was wrong with us, kiddie stuff should have gone o-u-t a long time ago.
What Are You? The Wacky World of Funny Accents
Published July 22, 2009 @ 10:51AM PT
There's a farmer's market down the street from me. Rainier cherries were on sale for $2.47 a pound--an irresistible opportunity.
There was no get-in-get-out for me this time--before I'd even gotten a bag for collecting my cherries, I was confronted by crescents of fresh cantaloupe, "have some fresh cantaloupe, have a sample, please," a voice, connection. Say thank you-- "Yes, thank you." Good grief, that melon is good! "Melon is very good."
"Oooo, what are you?" the lady asked me. "You have such an accent! I'm Russian."
This is kind of a funny moment. Do I say, "Oh, I am apraxic!" Or "I am autistic!" Do I say, "I am Italian, but my 'accent' is just a speech problem?" What are you? Always an interesting question.
After a lot of thinking about how much educating I want to do right that moment (none, all I really wanted was to plop those ripe, juicy cherries into my mouth) I answered, "I have trouble speaking." I smiled huge, laughed a little, so that she knows I do not take offense. It's a sequence of steps I've learned, practiced, repeat a lot. I have a few versions of the script.
I met recently with a lady with ALS who is interested in one of the speech devices I use. I handed her my device with my "greetings" page open for her to play with and she pressed on "I can hear you just fine." She started laughing. She understood exactly why I have that message. When I'm at a disability-related event instead of a fruit stand, or interacting with someone who has connections to the Deaf community, I get signed at just as often as spoken to.
This is an interesting example of how context and experience plays out in people's assumptions: my "accent" is assumed as coming from growing up as a non-English speaker to some, and assumed to be because I'm deaf to others, depending on what sort of culture one is attuned to.
I long ago got over the childhood torment I'd been put through over my "funny accent." It's just a fact of my life, and I have learned how both accept it and how to help others to understand and accept it also and move past it. Learning how to effectively dispel various not-quite-right reactions to atypical communication is a very valuable life skill to me and to the people I interact with.
Too Much Sad News
Published July 09, 2009 @ 02:25PM PT
This is turning into a very sad week for news about autism. Tuesday I wrote about the terribly sad and unnecessary death of 9-year-old Jeremy Fraser in March of this year. And then came reports about 10-year-old Michael Becht, Jr.: As reported in the July 7th Pioneer Press, Michael was found dead in his home in South St. Paul on Monday, July 6th. His mother, Patricia Becht, is the "only suspect" according to authorities. Becht and her 11-year-old daughter are both in the hospital with injuries but are expected to survive. Another daughter, 16-year-old Cara Freeman, has not been able to speak to either her mother or sister since Monday. In an interview with KAALtv said "'"No way in a million years I’d imagine she'd do this. She loved us too much.'" A relative noted that Becht, a single mother, had had "depression for years and has been on medication and in therapy for as long as she can remember."
Both Jeremy Fraser and Michael Becht, Jr., were autistic. The mothers of both boys have been accused in their deaths. Kristen LaBrie is accused of withholding cancer treatment and Patricia Becht is suspected in her son's death.
Me being the mother of an autistic son, hearing about stories like these cuts close to the bone, and I remember Katherine McCarron, who was three years old when she was killed by her mother, Karen McCarron. Katie's birthday is July 22nd; she would have been 7 years old this year.
And I think that all I can say is, after reading all these stories, I get up and go to wherever Charlie is and sit beside him, and am just glad for every moment, difficult and peaceful-easy, I have with him.
