January 09, 2005 October is Koufax Pledge Drive month
Oskidkamigwinnoak
Kathryn Cramer, in her ongoing quest to find a clue when it comes to parenting children with autism, declares herself thoroughly offended by my previous statement (intended for her comments, but banned by Ms. Cramer as being "trolling", so posted below):
ABA and biological interventions (chelation and gluten-free diets) have returned my sons from the brink - the brink of humanity, to be honest.
It's now quite clear that Ms. Cramer has little or no contact with families with more than mild or high-functioning autism. It's also clear that she has little or no contact with people from non-European cultures. Or if she does, she makes no attempt to understand us.
Europeans tend to view the natural world as a dicotomy between human and animal, with the former being positive, the latter, negative. This derives mostly from the tradition of animal domestication. Nature, if not tamed, is bad.
We view things differently. There are multiple symbiotic layers to the natural world, and they are seldom fixed. Humans, animals and spirits live separately, but never far apart. Our relationship with Bizewakamigw (the animal world) or Jibayki (the spirit world) is not the antagonistic one Europeans have with their animals, or their spirits, gods and ghosts as well.
Grace, the eldest of our four, was highly "spirited" as a child; her child's name, in fact, is Awah8dos, or "little spirited one", aka, "bug". She would throw earth-shattering temper tantrums when she was two, often for more than an hour on end; more than once, she reduced her nanny to tears. At times, she seemed to reside on the edges of Bizewakamigw, more bear cub than human. But we knew over time she would choose to live with us, and let her find her own way, with our guidance and support. Like the "Boy Who Went to Live with Bears", she did.
But Grace does not have autism. In fact, she's completely "neurologically typical."
When Sam first got sick and started to slip away, he did not head towards Bizewakamigw; instead, he moved slowly and silently into the shadow of Jibayki, more comfortable with the spirits and ghosts we could not see, but he could. Jonah soon joined him. More and more they left their human lives, and with such, their connection to their parents and siblings.
Many stories have been told of our forebearers who crossed the borders into the animal and spirit worlds. In some cases, the stories are generally happy ones, like that of Sigo. In others, they are quite tragic. But in all, the families who are left in the human world mourn the loss of their loved one, and seek to bring them back. So did we, using the best tools we had at our disposal: ABA. It was from that brink we pulled them back.
Ms. Cramer is offended by my use of this language because of her own inherent biases that "humanity" is somehow vastly superior to the animal and spirit worlds. We, however, do not hold such views. But still, we have no desire to lose our children permanently to those realms as we are, in fact, selfish. Yes, for our ourselves, and for our children. Not because residing in Jibayki is so terrible, but because it is so terribly far away; from us, and from the rest of humanity, Oskidkamigwinnoak.
When Ms. Cramer claims "I think I've learned enough unpleasant things about that subculture for one week," one wonders which "subculture"; families of children with autism or the not-so-noble savage?
Wow, what a beautiful way of putting it. And that's precisely it: I want my daughter in my world, not hers. Yes, it's a judgment; yes, it's selfish. So be it. And I really really really don't think people can "get" the nature of making that choice and what *not* making it means unless they've faced this kind of disability for their children, one that manifests itself not in some more definably "medical" way but in behavior. And yes, behavior is culturally determined. Of course it is. BUT. If our children are incapable of learning what is outside the boundaries of the normative in that culture (regardless of whether they reject it or not later), how can they survive? Which is why some of the Positive Behavioral Support people piss me off, by saying, "Well, we'll work to change the culture." Yeah, in my copious free time. Too blithe and airy by half.
Okay, done spewing.
Posted by: emily at January 9, 2005 11:33 PMGreat post!
What's funny to me is, when I read your comment, I understood what you meant. Maybe because I've seen it first hand and Ms. Cramer hasn't. My wife and I have a joke we tell eachother; 'Our son is perfect; it's the rest of the world that is screwed up.' Unfortunately, to survive you have to be just as screwed up as everyone else.
OT, but we just started our son on Melatonin (for sleep troubles) and it is working a great "upward spiral" for him and us (he sleeps throught the night, so we sleep through the night, everyone is less cranky, "behaviors" diminish due to better rest, and so on). Has anyone else tried Melatonin? If so, what has your experience with it been like?
Posted by: joshowitz at January 10, 2005 09:17 AMYes, Josh, we use melatonin, mostly with Jonah, who has pretty severe sleep "issues". It generally works great, though not if we give it to him too early, i.e., he still wakes up at 2 am and is up for 2-3 hours.
I sometimes take it as well ;-)
I have no personal experience with melatonin, but coturnix at circadiana seems to think it's overrated. I don't know what his personal credentials are, but he does seem to know some about sleep: http://circadiana.blogspot.com/2005/01/everything-you-always-wanted-to-know.html
Popping melatonin pills is one of the latest crazes. Melatonin failed as a sleeping pill and its uses as a scavenger of free radicals are dubious at best. It can shift one's clock, though (http://rebeldoctor.blogspot.com/2004/12/melatonin.htm). However, it cannot help against jet-lag or effects of shift-work (shift-lag) as melatonin is likely to shift only the main brain pacemaker in the suprachiasmatic nuclei. The problem with jet-lag and shift-lag is dissociation of rhythms between cells in different tissues, i.e., your brain clock may resynchornize to the new time-zone/schedule in a couple of days, the clocks in your heart and lungs in a week, and in your stomach and liver in a month. In the meantime, everything in your body is desynchronized and you feel really bad. If you keep changing your work shift over and over again, you never get to achieve complete synchronization, leading to long-term effects on health, including significant rise in heart attacks, stomach ulcers, and breast cancer.
Posted by: Peatey at January 10, 2005 10:59 AMUh, html tags don't seem to work. the big paragraph that begins with "Popping melatonin pills..." is from coturnix's post, not my words.
Posted by: Peatey at January 10, 2005 11:00 AMI wonder where the condition called "Asperger's Syndrome" fits in the animal'/spirit world continuum?
Posted by: Steve Plonk at January 10, 2005 04:53 PMI would imagine that many a shaman in olden days was an Aspie.
Posted by: MB at January 10, 2005 05:00 PMGood post. Me, I'm forever learning very unpleasant things about plenty of subcultures. It's the rage of the age...
Posted by: VJ at January 11, 2005 05:49 AMI heard an interview with Temple Grandin on NPR this afternoon in which she described autism as being a "waystation" between animal and human behavior. As she is autistic, she meant no insult. It made me think of this post.
She's got a few books out I think Dwight. Pretty interesting person, with some new insights into animal behavior. I think she was cautious about applyling her personal experience to others though.
Posted by: VJ at January 12, 2005 02:05 AMWe read Temple Grandin's book; amazing woman. Was beaten near-senseless for her autistic behaviors, then as an adult designed cow-herding gates for meat processors. She is very in touch with her animalistic nature, which is a good thing.
I really hate when people act like humans are the be-all, end-all of the planet/galaxy/universe. Which reminds me, HHttG--the movie is coming out this summer. Keep a towel handy!
Posted by: joshowitz at January 12, 2005 01:28 PMI guess I should have identified Temple Grandin but I assumed that everyone involved with autism already knew who she was and was familar with her story and her books. After all, she is probably the most famous autistic person whose fame arises in no small measure from her autism.
Posted by: dwight Meredith at January 12, 2005 03:42 PM