Sunday, October 07, 2007
I never guessed what a toll disability could have on a family's ability to stay sane and stay together. As I watch other families divorce and otherwise part ways, I am all the more resolved to keep ours together and stronger rather than weaker by virtue of the challenges we face. Kuruna is such a gift to the world. I don't want his life to be blamed for family strife.
I noted with cynicism (forgive me) the publicity surrounding Jenny McCarthy's new book on helping her son with Autism. She divorced her son's father over the strife of her son's diagnosis and treatment. Then (apparently) Jim Carrey saved the day but attaching to her son and making him more "normal." The book followed, with magazine articles trailing...all about her crusade to help her son overcome autism's limitations. I am not sure what her crusade proves other than the only way to overcome the inevitable relegation of children with developmental delay and their mothers to pariah status, one has to become an outspoken celebrity book author. I am not interested.
I am much more interested in finding a place in the world for my son - who has no super- powered comedic actor to intervene on his behalf. I would much rather spend my energy educating others about how to listen to children with autism and other "delay" diagnoses. I am more interested in finding help for families exhausted by all the emotional and physical work and disappointment. I am interested in helping families store up for their children's future without them.
I am not interested in celebrity sob stories or even in emotional testimonials. I am not interested in "fixing" the millions of children with developmental delay (though more research definitely is needed on causes and treatments). I am interested in creating a new culture that accepts and welcomes children and their families with developmental delays whether they are wealthy celebrities or just regular folk. I am interested in keeping the bright beaming smile on Kuruna's face each and every day without having to work so hard that I can't find my own smile anymore.
Thursday, July 12, 2007
Anyway, miracle hubby (MH) gets her a bowlof Cheerios and milk--which she rifles through--He then asks her if she wants some more, to which she replies yes. So MH gets a scooper full of O's and put them in her bowl and walks away. Satya then asks if she could have some more milk as well.
And then she says: "Dad it's called 'cheerios and milk', not 'cheerios and bowl.'"
Wednesday, May 09, 2007
Sunday, April 29, 2007
Quoting Andrew Revkin:
"...is the carbon-neutral movement just a gimmick?
On this, environmentalists aren’t neutral, and they don’t agree. Some believe it helps build support, but others argue that these purchases don’t accomplish anything meaningful — other than giving someone a slightly better feeling (or greener reputation) after buying a 6,000-square-foot house or passing the million-mile mark in a frequent-flier program. In fact, to many environmentalists, the carbon-neutral campaign is a sign of the times — easy on the sacrifice and big on the consumerism." go read it
We all know (don't we?) that Carbon-neutral companies don't work that way. They say they will put our carbon payments towards fighting global warming or other such vague efforts, but unless they are able to show someone else is literally offsetting my output, it is not going to work.
So, what can we do on a local scale to move off the dime and make some actual reductions? Better transit use and availability? Better community planning (work, stores, residences, schools within closer proximity)? What is it that we will do (are willing to do?!) in our communities to start a change? That's a question that bothers me daily because I think climate change is one problem we can't solve on an individual or family level. It will take community cooperation and sacrifice - which means the first step is building real community trust and cooperation first.
Who remembers how to do that?
Friday, April 27, 2007
I have to admit, my husband and I have recently had conversations about our financial state after law school that go something like this:
"How can we make $ X from our combined incomes so that buy a house in Vermont that will probably cost twice that, so that we can save for college for our children that will cost three times that, and so that we can save for retirement that will cost four to seven times that amount? Then we consider that out of that same income (which is still well above the national median, mind you) we must also pay off school loans, afford health, life and home insurance, and fulfill our commitments to our church and community organizations. It seems too much.
Then I thnk of the millions of families who are the "working poor" with no prospect for retirement, no health insurance, who live daily with job, food and housing insecurity. This is a real problem in Vermont and in the Upper Valley. But how in the world do we get people into office who care enough about our virtually invisible and certainly disenfranchised neighbors? Who can explain to those already in office that neglect of our poor citizens DOES effect the business bottom line through a complicated economic system of lost productivity, trade imbalance, regressive taxes and system-wide cost shifting?
There seems to be a threshold of entitlement for the wealthy, that makes $25 Million space vacations OK and somehow beyond ethical scrutiny. (see Simonyi's $25M space station trip). Considering that the majority of our national leaders either come from such wealth or now live in it, how do we raise their consciousness beyond compassion to the level of courage required to do something?
Wednesday, April 25, 2007
In a recent conversation about the origins of Gatorade, Satya asked why it was necessary to create an electrolyte sports drink. I explained the severe conditions under which young men train for the fall football season. I mentioned not only the hot humid Florida weather, but also how football uniforms with their layers of padding and jerseys and medical tape compound the problem, making it hard to rehydrate with water alone.
"So why don't they just play football in the winter so they don't risk sweating so much?" she asked. "And," she continued, "why don't they schedule basketball season early in the fall and possibly soccer?"
It seemed so simple. "Because they don't have a smart girl like you to run the athletics program," I replied, thinking that if she can solve the problems facing Division 1 college sports at age five, perhaps she'll be ready to work on the energy crisis by age nine or so.
Thursday, April 19, 2007
*(O.K. I am in law school, so it is fair to say I don't keep up with anything. My dear Mom keeps up with the news and research and sends me links and articles.)
What I am seeing makes me extremely uneasy. For instance, look at this list of symptomatic behaviors...
* lines up toys
* plays with toys in same manner every time
* is very organized
* is rigid about routines or object placements
* upset by changes
* eat few foods or only certain textures
* smells food
* unaware of danger (e.g., hot things)
* tantrums for no apparent reason
* has obsessive interests
* likes spinning objects
* likes to spin him/herself
* likes parts of objects (e.g., wheels)
* does not use toys appropriately (lines up cars by color rather that zooming them)
* special areas of talent or expertise
* walks over things (e.g., toys) unaware
Yes, I pulled them from the CDC website on Autism:
Look at them again. I removed only three or four:
* insensitive to pain
* unaware of danger (e.g., hot things)
* hand flapping/finger flicking/toe walking
How many professors (or other brilliant and talented but perhaps quirky types) do you know who exibit three or more of the behaviors from the top list (substitute toys with something else like pens, etc)?
We are being over inclusive here. I think we (I am using the human "we") have no idea what's going on with these kids and who fits in and who does not. We've considered professors (and other amazing people). What of these ASD spectrum characteristics would be evident in the prison population. (That's a bizarre and completely unsupported bomb, I know, but keep your mind open. That's what we do at this blog). I wonder how ASD responds to coke, to THP, to heroine. I wonder what happens to un-identified kids with ASD. I wonder what happens with unidentified poor kids with ASD. What do you think?
Why am I asking these questions? I think we are facing a huge mental health and or environmental problem that we are not equipped to understand much less address. When I look at the ASD informational websites and the number of kids with delays I see everyday, (scope of the disorder as described and the pervasiveness of the condition in the population), I get a very discomforting feeling.
On the one hand, there is a huge population of kids with serious problems. On the other hand, we are describing them with an overbroad brush. No wonder researchers voice such extreme opinions about the demographics of ASD. Is it an epidemic? Is it that we are better at diagnosing kids?
We've got an enormous group of people to look at, why can't we (or don't we) describe them accurately? You're kidding me that we can't do better than "special areas of talent or expertise"! That's not a problem description; that's an item on a college application. What logical person would put that in the same list with "hand flapping/finger flicking/toe walking"?! More interestingly, why do these symptoms show up in the same (beautiful, brilliant, challenged sweet) person?
I still can't pinpoint what exactly is wrong. It's just wrong, though. Something is wrong.
Saturday, March 24, 2007
Give me a break on the practical side. I am asking this initial question without regard to HOW. I just want to consider that perhaps the concepts of law are way outdated.
Law seems to have three major purposes. It deals with identity or "self" and property, alone or the interchange between them. Law has contracts and other instruments for legal entities (legal selves) to distribute property: contracts for sale, wills, etc. Law provides punishment for anyone who threatens or harms other person's or properties. I could go on.
However, our concepts of personhood or self and our uses for property have dramatically changed with the Internet and global warming.
"I" can be several different entities. I can be a corporation. I can be a celebrity with a stage name. I can be an unincorporated organization. I can be an anonymous (and unidentifiable) Internet presence. While we have maneuvered around these problems, it may be time to treat identity as usufructory or alternatively, as a collection.
And, speaking of usufructory, property, though by title perhaps "belonging" to a specific owner, actually belongs to a complex body of interdependent land and natural resources. Rather than taking property "to the exclusion of the rest of the world," perhaps we should give executory control of land only to those who would serve and lead the community in its use.
So where to start? How does one reform a system?
Sunday, March 04, 2007
This morning, I returned to law school work in earnest for the first time since the beginning of February. I took the long back road over the hill to school. (No need to get there too soon!) I chose Bob Dylan's Modern Times as my rambling music. As Dylan's "Spirit on the Water" colored my mood, I watched the snowy world pass by outside my window and noted how well our local plowers take care of the back roads. I also noted who has posted their property against hunters and x-country skiers and who has not. I cruised around curvy bends and across high country farms. Dylan is great on the road.
This album, in particular, evokes environments and people in motion. It transports me to seedy bars, open campfires, and church basements. Sometimes it just evokes an intimate Dylan concert. I was somewhere in one of these reveries when an enormous black object blocking the otherwise pure snowfield shocked me into braking.
About 20 mph further down the speedometer, head turned sharply to the left, I deciphered the vacuous presence. A large, black woolly cow stood, somewhat aloof, eying me from her fence post.
photo credit jdj150
Monday, February 26, 2007
Now, reluctantly scientists involved in the global warming discourse have added population growth to the list of contributors. Al Gore, Bill McKibben, The Washington Post and others in the environmental community list population growth among the top ten issues we must tackle.
I have yet to see or hear, however, any approach that can reconcile a couple's profoundly personal decision to procreate with the impersonal bureaucratic approaches to population control. Nor have I seen, outside of China's long standing policies, any government advocate control of its own population. Rather the trend seems to be that industrialized countries focus on stemming growth in developing countries, reflecting paternalistic and nationalistic sentiment about curbing new births.
We are in such a bubble of denial. I wonder what event will precipitate a paradigm shift in the Nations' approach to population growth. It will not be reaching 7 billion or 8 or 9. It won't be a great famine or weather-related disaster. It won't be a flu pandemic. I wonder what will burst our bubble.
I wonder if it will be a photograph.
In 1969, we first saw the Earth. No longer did we depend on imagined artist's conceptions. We saw the real thing through a lens. As many have recounted, the real image of the earth brought out truths no mathematical or literary descriptions could.
Today, we depend on huge numbers, statistics, and analogies to envision our population. It would be impossible, in fact, to actually count the people on the Earth or to see them all at once. Perhaps some smart person can overcome these challenges and illustrate in a meaningful way --perhaps using the wonders of digital photography and video, peer networking and the (Semantic?) Web--how our Planet groans. If we can indeed all come to understand the same truth (just how big is 6.4 billion?), then we might have a starting point for this conversation.
Wednesday, February 14, 2007
photo credit gadjoboy
It's a very white one at our house. 18 inches of powder at 4pm. Outside the window a sheet of white gauze hides the rest of the natural world. No trees. No mountains. No sky. No sun. Just snow, snow, snow.
Inside sniffy noses and occasional fits of "boredom" give way to masterfully designed forts, illuminated Valentine's cards, and smells of fresh bread in the oven.
We are all recovering from flu and regretting not having had the energy for the last week to make and send cards to all we love. Hugs (and hearts) and kisses!
photo credit Butterflysha
Wednesday, February 07, 2007
I can't remember what part of Winnie the Pooh this comes from. There is a Mr. Busy-Backson who is always running to the next thing. That was me today:
- I was up at 5...
- studying for a half hour,
- making lunches,
- making coffee for the magnificent spouse (He loves my coffee; therefore he is manificent.),
- breakfast - more studying (usually time for a run, but it is -1 F outside)
- off to Kuruna's neurologist (studying while we waited) Done at 12:30
- off to an interview (mine - far away, studying just before) there by 2:30; home by 5,
- back to cook dinner,
- kids to bed,
- folding laundry with Satya (no really, she loves this),
- violin practice with Satya (don't ask me how my piece is coming...),
- studying, and
- thank yous to prospective employers.
"His labor is a chant,
His idleness a tune;
Oh, for a bee's experience
Of clovers and of noon!" - Emily Dickinson
photo credit Iwona Kellie
Wednesday, January 31, 2007
From the Star Telegram - Austin
"Molly Ivins, whose biting columns mixed liberal populism with an irreverent Texas wit, died at 5:30 p.m. Wednesday at her home in Austin after an up-and-down battle with breast cancer she had waged for seven years. She was 62. "
Molly was a courageous and outstanding columnist who always kept this disaster (of leadership since 2000) in perspective for me.
I had hoped if anyone would be the first commander-in-panty-hose that it would be Ms. Ivins. . .though I am not sure that she actually ever wore panty-hose.
I am sorry she's gone.
To hold your seat in the Buddhist sense is to be patient, to remain unattached, un-reliant on certain things happening or maintaining. To hold your seat is to be just as open to bad things happening as to good things.
I chuckle over this tonight, as I look back on a "good" day. I hope I have the courage tomorrow morning when I wake to welcome the day and all the good and bad it will bring.
Wednesday, January 24, 2007
Or maybe I've gotten it all wrong. Perhaps, as some suggest, it is possible for us to create this change (as quickly as the ice caps are melting) simply by using the trains and lightbulbs available to us now. photo credit Bruno Rodrigues
Sunday, January 14, 2007
Satya's watching Finding Nemo this afternoon and (guess what?) Nemo's mother is killed in the first minute of the film. Is it time to join "mothers-against-mother-less-faerie-tales" (MAMLeFT).
I realized while drafting the MAMLeFT charter, that there is a very, very good reason Moms are out of the picture in stories like Snow White, Hansel and Gretel, Nemo and even Star Wars. If Hansel and Gretel's mom were around, their little jaunts into the woods everyday while Dad was away would have been HISTORY! They would have been sitting at home learning their lessons and getting some discipline (as well as a well rounded lunch!). The same goes for Snow White, Nemo and Luke!
That's not to say we moms don't have adventure in our blood. But we know that trekking off on pirate ships, hunting down witches and playing games of Truth or Dare must wait until after homework and chores.
In fact, nearly all of my childhood adventures occurred away from the maternal lair. The one exception: a spontaneous trip I took with my mom to Graceland when I was a teenager. But that's different. Elvis loved his momma and my mom loved Elvis. It was her adventure. Her mom wasn't there, and I had just come along for the ride . . . and the pink Cadillac key chain. Elvis bought that pink Cadillac for his Momma, so I guess even she needed an escape.
Turn the idea of motherless faerie tales on its head and I like it even more. Mothers have to be out of the picture because we are ultimately stabilizing, safe and reliable. We are ever the calm and nurturing harbor, the nightmare conquerors, perhaps even the wizards with the age-old answers. We are not companions forging the wilds. We are the soft embrace of home. Wow, it all sounds so conservative and old fashioned! How about primordial?
How about it's 1 in the morning and stable, safe and cozy sounds much more appealing than pirate adventures in a pink Caddy.
photo credit William Eckerslike
Friday, January 12, 2007
Instead, I am going to write about the wish game. It is much more productive of world peace, I think. Here's how it goes: Each person takes turns in a circle offering what they wish. But here's the trick. Your wish has to be for something you already have, or even better, are already experiencing.
What's the good of that?, you ask. Instant wish fulfillment. Instant happiness!
Isn't that what we Americans are always after anyway? It is the perfect combination of Buddhist practice and American culture. By wishing for what you have, you appreciate where you are and you make it brand spanking new again.
(Come to think of it, it's kind of like Bush's new strategy for Iraq. OK not really. And, I promised I wouldn't go there.)
So here's how it goes at our house--or actually in our car, 'cause that's the only place we play it:
Satya: I wish I were in the car on the way home
Me: You got your wish
Me: I wish I were going to law school...
Satya: You got your wish
Kuruna: I wish, I wish...stinkies!
(Ok, we don't really know what he is saying or what he means. I consider it the babel of a wise man)
Satya: I wish I were feeling udgy in my car seat and hungry
Me: You got your wish
Me: I wish I had two really silly kids...
You get the idea. I know it seems pointless and not all that funny. The path to enlightenment is quite unexpected...just start walking, you'll find it.
photo credit Mayu P
Thursday, January 04, 2007
From the safety of a more integrated society, I can comfortably agree with King on the principle: say what you believe and believe what you say; don't avoid taking a position merely to ensure you are secure or don't offend. In easy times, your inaction is cowardice. In hard times, your inaction is a danger to society and civilization.
I have heard stories about "the Greatest Generation" - how they stood for something, spoke up about it, acted on it. The Boomers also marched and stood and sat-in. What does my generation do? We post to Move on. I am not even sure I know what standing on principle looks like.
OK, that's not entirely fair. There are some amazing individuals. But I don't see the mass movement. Can effective protests and social movement really be made in the bloggosphere? All I ever here is "watch what you post; your future employer may be watching."
I want to show my children how to speak and act with conviction. They do it so well, already. So what is it exactly that I am standing for? The Dalai Lama stands for altruism, compassion and non-violence in its many relevant forms. OK. I am there. I am a Buddhist, anyway, so that makes sense. But how this translates to daily life, this question still frustrates me.