River Rocks: gallian's journal|
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|Sunday, September 9th, 2012|
|Feeling Snarfly after a Bad Day
I had a stressful morning at work Friday. It had nothing to do with the students. I was stressed for unrelated reasons. However, because things have been going so well, I was able to recognize on the way to work that I was stressed. My experience last year, however, made anxious about how the day would go if I was less able to control myself in the classroom, which only added to the underlying unrelated stress and brought me pretty close to the breaking point. I took my paraprofessional aside before the day started and explained what coping mechanisms he was likely to see and to ask him, if it started affecting our classroom, to please tell me so I could get out of there and calm down. He seemed to get it.
We got down to the business of teaching and I settled into my routine. I could tell my stress level was still relatively high, though not as high as I had anticipated. (It certainly helped that the students were in good moods.) I did point out the self-calming tool I was using at one point (self-talk) because I was using it almost constantly. My paraprofessional smiled and shrugged in a non-verbal statement that I think I correctly interpreted as “that’s just part of you being you, no big deal.”
Feeling safe, and the passage of time, brought my stress levels down. (I didn’t get any resolution to the underlying cause of the anxiety.) What had been an overwhelming anxiety when I arrived at school was a nagging thought in the back of my mind by lunch time.
A stressful (or at least, stressed) day, but I came home at the end of it feeling quite good. Certainly a lot better than I anticipated when I left for work. Why? Because in my classroom it's okay to be Autistic and be a teacher. Because I can use my coping mechanisms and other compensatory tools, even when they don't look 'normal' and still have the respect of those I work with.
Yes, I'm feeling pretty snarfly right now, even after a bad day.
|Sunday, August 5th, 2012|
|teaching emotional understanding
I teach a daily social skills group to teenagers with severe communication challenges. I am autistic myself. I find this ironic at times. However, what I find most striking is the unwillingness of my students, on and off the spectrum, to identify negative emotions. I have come to believe it is the way that we teach this skill that is flawed, not our students' ability to acquire the concepts.
( Read more...Collapse )
First, I need to meet with the students' educational team. I need to explain to them how to model using this instructional strategy and how to use it directly with students. I need to get their buy-in for prioritizing learning over decorum, for prioritizing understanding over control. These are not the priorities we are used to. We work in an environment where the administration defines how good a day we had in my classroom by how often they did or did not hear us call for behavior support. However, they are the priorities my students need in ordered to be successful. These are the building blocks of self-monitoring, self-control, and self-advocacy; there are no more important, or more fundamental skills for my students to learn.
|Saturday, June 30th, 2012|
I am autistic: I have difficulty recognizing other's perspectives. It is hard for me to understand why they don't see things the same way I do; after all, it's obvious to me. When I stop and reflect, however, I realize that I, myself, have used multiple perspectives over my lifetime to understand myself and the world around me. (a description of that might make for an interesting post, but not this one.) If one person can have multiple perspectives over time, doesn't it stand to reason that different people can have multiple perspectives at the same time?
The metaphors I have used for self-understanding have changed drastically over my lifetime as I have grown, learned more about myself and explored different interests that resonated with me. When I look at the deeper meaning of each metaphor, I realize they are describing the same thing over and over. Different perspectives are like different metaphors: you have to look to the meaning to find where they are different and where they are the same. The language itself will not tell you.
It all comes back to language. I don't use it the same way as a neurotypical would. Autism is, in large part, a difference in communication, and I'm not as good at translating as one would expect from someone who's lived most of her life pretending to be neurotypical. I never paid enough attention to others' perspectives to bother to learn. Seeing a different perspective, for me, requires a translation: a reapplication of metaphors. I can't easily see how the metaphors line up, so I take them at face value and only see the difference.
Instead of putting myself in someone else's shoes, I need to put myself in their language. I need to apply their metaphors to my understanding to really know where they line up and where they diverge. Then, the challenging part, I need to explain it to them using their language, their metaphors, so they can understand me. Translation itself won't bridge the communication gap. The gap of values is so much more than a metaphor translation. The only way to do that is through education: education presented in language the student can understand. They only way I can teach people to see and value my perspective is by understanding and explaining it using theirs.
|Monday, April 30th, 2012|
|To "I Wish I Didn't have Aspergers" from gallian #AutismPositivity2012
I am not here to tell you that it never sucks to have Aspergers. Sometimes it does. I know, I've been bulled most of my life because of it. I won't say I wouldn't prefer to be able to communicate the same way as my coworkers, because if I could it would certainly make my working life a whole lot easier. However, Aspergers is an intrinsic part of who I am and I have no desire to change it.
I value direct communication. Missing all the social baggage associated with nonverbal cues means I never had to deal with the awkwardness of the high school social scene, or worse, dating. I found someone who was of like mind, and we simply skipped that step.
Combine my social oblivion with my sensory issues around taste and smell and I never had any interest in smoking or drinking, but I never felt any peer pressure to engage in those behaviors either, even when I was around people who wanted to pressure me. Tactile defensiveness means I'm incredibly picky about the feel of the clothes I wear, but deficits in pragmatic language mean I'm not influenced by any need to look "trendy" so I wear what I want. Occasionally, I even get compliments on my outfit, which never fail to confuse me.
Everyone has different strengths and weaknesses. You will find yours. I won't tell you it is going to be easy: the world was built for neurotypicals and we are not. However, it's well worth the effort. Besides, confusing the NTs can be fun. :)
|Monday, August 29th, 2011|
|Saturday, August 1st, 2009|
|Sunday, July 26th, 2009|
|Saturday, June 20th, 2009|
|Saturday, June 6th, 2009|
|Blink for Disability Rights
Please help my people
The poor and downtrod
I thought we all were
The children of God
God help the outcasts
Children of GodMy guess is that the kind of widespread intervention that is being advocated in the actual paper–restricted to “nonambulatory children with profound cognitive disabilities”, but still covering many thousands of children in the US alone–won’t cause that much of an eyeblink. But could this be said of the description above? What does this tell us about how “profound cognitive disability” (or is it the “nonambulatory” bit here)?
Change.org, which I read with regularity, has an autism action section and a human rights action section, both of which occasionally touch on larger issues pertaining to disability rights. (Unsurprisingly, the autism action more than the human rights action.) Is it any wonder that ADAPT advocates were told that the Community Choice Act, a part of President Obama's campaign platform, was "not a priority for this administration?"nightengalesknd
, here is a link
to the abstract for the Pediatrics
article. Can you find the whole thing? I've read some of Dr. Diekema's other work pre Ashley X, so I totally believe that it says what Spirit of our Time claims it does. Still, it would be nice to see the source material.
|Tuesday, April 21st, 2009|
|Final Thoughts on Baby Kaylee and DCD
Stephen Drake at Not Dead Yet has an update on Baby Kaylee.
She is now considered stable, and is going home. It appears her parents are better educated as to the reality of her condition than they were before the story broke. Would that have happened without the media attention? Or would she have become another Annie Farlow?
Dick Sosbey has a very thoughtful article
over at What Sorts of People about the moral and ethical implications of donation after cardiac death, the donation procedure that was going to be used to give Kaylee's heart to another child after the ventilator was turned off; the same procedure that killed Ruben Navarro
. Key excerpt here (emphasis mine:)
Is it merely coincidental that the donation-after-cardiac-death donors are almost always, if not always, severely cognitively impaired or labelled as severely cognitively impaired? Has anyone ever transplanted the heart of donation-after-cardiac-death donor who is not severely cognitively impaired into a recipient who is severely cognitively impaired? If so, I would be delighted to hear about it.
Many years ago, in defending the hospitals transplant of a healthy baboon’s heart into a human child, David Larson, co-director of the Center for Christian Ethics at Loma Linda University, has quoted as saying,
If a primate’s capability was higher than a human’s—say a severely mentally handicapped child’s—I think it would be appropriate to support the opposite approach . . . a transplant from a [severely mentally handicapped] child to save the life of a healthy baboon.
So, perhaps the real issue is not whether the donor is already dead or is killed in the process. The real issue is whether anyone cares if he or she is killed, and if the donor has or is thought to have a severe cognitive impairment, no one seems to care very much about the details. In my view, this is the heart of the matter.
|Friday, April 10th, 2009|
I don't celebrate Easter. Duh, I'm not Christian.
However, there is one part of Easter that I feel very passionately about: the bunnies. Every year, millions of baby rabbits are impulse-purchased as Easter gifts. They are cute, and people are under the mistaken impression that they are "low maintenance" (they're not) or that they make good "starter pets" for children (they don't. In fact they're poor pets for children due to their fragile bone structure and their general dislike of being picked up and cuddled.) 6-8 weeks from now, when the novelty wears off and the hormones of an unfixed pubescent rabbit start to kick in, most of those rabbits will be dumped at already overloaded shelters, where they will likely be euthanized, or worse "set free" into the wild, where they do not have the instincts to survive.
This is why I support the Make Mine Chocolate Campaign.
If you are going to get a rabbit this Easter, make it a stuffed one or a chocolate one. Let's make it a happy Easter for the bunnies too!
When you choose your chocolate, please, choose with your conscience. I know that many of my friends are chocolate connoisseurs (and that I am not.) However, before spending your money, I ask that you at least read what the Autistic Self Advocacy Network has to say, and consider signing the petition to tell Lindt Chocolates that Autism Speaks Doesn't Speak for Us.
|Thursday, April 9th, 2009|
Kaylee Wallace is a 2-month-old who deserves a chance to live. She has Joubert Syndrome which causes severe apnea, meaning she requires a ventilator while she sleeps to keep breathing. Joubert syndrome can also have other neuromuscular complications, but it's too early to tell how Kaylee will be effected long term. Many children with Joubert Syndrome grow out of their apnea.
But that is not how it is being reported by the media. I first heard about Kaylee's story from Stephen Drake of Not Dead Yet, who has a reasonable explanation of what is going on, in the hospital and in the media.
He is right though. The coverage leaves more questions than it answers.
I found this article
, which portrays a more accurate picture of Joubert Syndrome, according to the clinical definition. It interviews doctors familiar with the disability, and parents who have a child who lives with it. More importantly, it interviews Kaylee's father who says:"As parents we've decided that what we'll do is take it by the moment," Wallace said after meeting with doctors Wednesday.
"We're prepared if she's going to go home disabled in any way shape or form we would be happy with that outcome."
He wants her to live if she can, even if that means she has a disability, and if she can't live, he wants her to be able to donate her heart so another child can live. I don't see anything wrong with that. I just wish I was convinced that he had all the information available about her ability to live. The experts and parents quoted in the second article haven't actually met Kaylee or spoken with her family.
My understanding is that now that Kaylee is no longer a organ donor candidate, and she survived the night on her own, she is going home (again.) I worry though, what will happen to her when the media blitz dies down and she has another episode of apnea. Will they let this little fighter die? Or will they let her, like millions of Americans do every night, use a CPAP machine to help her breathe until she wakes up again.
Her family wants her to live. She's already proven, by staying awake all night the night she was supposed to die and give her heart to another child, that she wants to live. Will they kill her anyway in the name of "letting her die?" I hope not, and I wish I could be more sure.
|Friday, February 27th, 2009|
|Illinois Forced Sterilization Law
Did you know that forced sterilization is not actually illegal? The court precedent that made it legal (Buck v. Bell, 1927) was never actually overturned. However, most states require a court order and have stringent standards before that order will be given. Illinois doesn't. And they're about to make it even easier. Please sign the petition below to tell the just how bad of an idea this is.http://petitionspot.com/petitions/hb2290
|Thursday, February 26th, 2009|
Several things going on in my allergy-world.
First off, don't miss the fact that Gov. Patrick signed the new Food Allergy Training bill into law last month.
Second, a coworker's son has just been diagnosed with milk and soy allergies. I've been trying to help her out with information/recipes/etc., but had one of those conversations with her this morning that just made me cringe. They're "trying not to let this affect their life more than it has to." Which means, instead of buying alternative products or figuring out how to make things with substitutes, they're just not giving him those foods. (e.g. a taco without the shell or cheese, because the shells are not dairy free.) I understand that they don't have the money to spend on significant alternative/organic foods. However, her concern was that she cannot afford shopping for 3 different meal plans (her husband is diabetic and needs everything sugar free, she likes her sugar, and now this.) Food allergies are, granted, a lifestyle change, but it is much easier to do so for the whole family than for just one member. She's banking on the fact that, because the tests came back inconclusive, that he will outgrow this allergy as mysteriously as he grew into it. While it's possible, it bothers me for his sake to hear her conceptualizing his allergies in those terms. I tried to explain to her that none of the allergy tests are as reliable as we'd like them to be and that the only sure test is the food challenge.
Recently, I've been dealing with some significant GI issues. I'd been considering, if they didn't calm down soon, making a Dr. appt. they were bugging me so much. And that says rather a lot given my messed up GI system. However, I think I may have found a or maybe even the culprit. It appears that my low level egg intolerance has decided to blossom into a full-blown egg allergy. Upon discovering that, it occurred to me that, back when I had my allergy testing done in 2004, I wasn't actually tested for any of the top 8 allergens, except for milk. In fact, I overheard one of the nurses there saying that she refused to test people for peanuts because of the risk that someone might have a severe reaction. They didn't test any of the allergens that are responsible for 90% of anaphylaxis episodes (peanuts, tree nuts, shellfish.)
The more I think about it, the less thrilled I am with that health center. Further, what I need now, health-wise, is someone to help me monitor and treat my candida issues. My PCP has said she doesn't know anything about that, and referred me to the allergist, who has now left. I suppose I could try and get his information for his new practice in Wellesley and try and get an appointment with him there. That would be a start at least.
|Saturday, February 21st, 2009|
|How did I miss this???
from the FAAN website (http://www.foodallergy.org/Advocacy/restaurants.html
)Massachusetts Restaurant Bill Signed Into Law by Governor Patrick!
Senate Bill 2701, sponsored by Senator Steven Panagiotakos, was signed into law by Governor Patrick on January 15, 2009. This landmark legislation, the first of its kind in the U.S., calls on restaurants in Massachusetts to:
* display a food allergy awareness poster in the restaurant staff area
* place a notice on menus of the customer’s obligation to inform the server about any food allergies
* train food protection managers and persons in charge of restaurants on food allergy issues
The Massachusetts legislation also allows restaurants to earn a "Food Allergy Friendly" designation from the Department of Public Health.
Text of the senate bill:http://www.mass.gov/legis/laws/seslaw08/sl080527.htm
|Friday, February 20th, 2009|
|Peanut Allergy Cure Coming?
The article makes it sound like this is the only study being done of its ilk. It's not. However, from what I've read, they're all having similar success, and with peanut allergies, the most deadly and least outgrown childhood food allergy.
I don't know of any similar studies being done on adults, though. There is reason to believe that the mechanism of adult food allergy is different (because they don't get outgrown.) However, if this method works for every other allergy-type out there (environmental, childhood food, etc.) then it gives the rest of us just a bit of hope.
I'll take hope.
|Friday, February 6th, 2009|
I am not quiet about my loathing for Jerry Lewis and the damage he does to the perception of people (especially adults) with disabilities as autonomous people.
Now the Motion Picture Academy wants to give him a Humanitarian Award at this year's Oscars.
Please sign the petition to tell them to cancel that plan:http://www.petitiononline.com/jlno2009/petition.html
|Wednesday, February 4th, 2009|
|Autism Acton Alert from ASAN
Kristina Chew (formerly of Autism Vox, now blogging at autism.change.org) brings to our attention another negative ad campaign depicting autism as a monster devouring innocent children. I don't think anyone here has to ask to know what I think of such an ad campaign. Link to the ASAN (Autistic Self Advocacy Network) Petition to quelch it is above at the end of the article. or go straight here:http://www.change.org/autisticadvocacy/actions/view/action_for_children_unethical_ad_campaign_alert
Community reaction got the "Ransom Notes" pulled. Sufficient effort can do the same here. Please help; it only takes a minute.
EDIT: I got a response to my email. Basically, their argument is that because a real child with autism described his situation with the "Monster" metaphor, that makes it all okay. It doesn't. Further, it shows their lack of understanding (and compassion) about the issues surrounding public perceptions of autism. Which makes it even more important that this ad campaign be pulled. Please take a minute to send an email.
|Monday, September 1st, 2008|