Archive for August 24th, 2009

Orlov on "Hunger Insurance"

Sharon August 24th, 2009

Orlov does it again:

 “I would like to sell you some hunger insurance. Are you insured against hunger? Perhaps you should be! Without this coverage, you may find it impossible to continue to afford feeding yourself and your family. With this coverage, not only will you be assured of continuing to get at least some food, but so will I. In fact, thanks to this plan, I will get to eat very, very well indeed.

Here’s how it works. You buy a hunger insurance plan from my hunger insurance company, or from one of my illustrious competitors in the hunger insurance industry. The hunger insurance market is very competitive, offering you plenty of consumer choice. You can even decide to go with a hunger maintenance organization (HMO); that would make a lot of sense if you are on a diet.

Whichever company you choose buys up food in bulk on your behalf. Then, should you come down with a case of hunger, you can file a claim, pay the copayment, and get some of the food. Certain feeding procedures, such as breakfast, are considered elective, and are not covered.

The company is in a position to demand lower prices for food from the food providers, and can even pass some of these savings on to you. (But the fine folks in the hunger insurance company do have to eat too, you know.) Of course, the food providers try to make up the difference by charging those without hunger insurance much higher prices, but how can anyone blame them? That’s just market economics. There may also be some food-related benefits, such as lower rental rates on bowls, spoons, napkins and feeding tubes (check the details of your plan).”

Read the whole thing.  You’ll laugh, but nervously.


Moving On

Sharon August 24th, 2009

There are, of course, plenty of moments in any life in which one despairs of the hope that really substantial change could be made in our society.  You look around and doing what needs doing seems hopeless.  But then, there are the other moments.

On Friday, we attended Eli’s annual end of school year ceremonies.  Unlike most kids, Eli attends school year round, along with all of the other 60 or so children who are part of his school for kids with autism.  The yearly graduation and celebration of their achievements is held in August, as the summer winds up.

In many ways, this is no different than open parent day at any school. In other ways, it is.  Some of the kids have elaborate academic achievements to show off, some have none at all.  In either case, many of the most important things come in tiny increments – this year, someone’s son learned to say “Hello” without prompting.  This year, someone’s daughter had only half the tantrums of the year before, and no longer cries when someone makes a loud noise.  Someone’s 7 year old finally toilet trained.  A 10 year old learned to converse about something other than trains.  These are the accomplishments that matter most – the ones that get our kids a little closer to being able to live in the world with everyone else.  While Eli did very well academically this year, the big things for us were these – he can put on his own socks.  He can now choose between 3 or 4 items, without having to echo the last one – he can pick the one he wants.  He can color.  He can answer abstract yes or no questions.  For a child with little language and poor self-care skills, these are the essentials, not that he’s able to identify the countries of Europe on a map.

My guess is that if you don’t have a disabled kid in your life, this sound tremendously sad and limited and unfortunate, and the idea of being in a room full of autistic children not very appealing.  And in some measure, that’s probably a normal response to those who have never had close experience with children with disabilities – it is a little scary for those it is alien to, and the idea of being thrilled that your kid can put on his socks seems strange, probably as though we’re secretly grieving for the child that never was, but putting a brave face on it.

And this may well be true for some people. I once read a book about a boy with autism that began with something along the lines of “X’s birthday is the saddest day of the year…” and went to detail why this was so, because on their son’s birthday the author and her husband spent the day mourning the child that might have been.  I admit, I can’t tell you much more about this book, because the whole beginning so disgusted me that I didn’t read it. 

And I don’t think that’s a normative response.  That is, it may seem, if you don’t have a child with a disability in your life as though you would spend your whole life reorienting your compass, grieving what isn’t and faking your way through pride and happiness at the accomplishments – after all, if you hold these kids up to “normal” children, they seem so strange – how could anyone reorient their priorities to be truly happy about their kids being their kids, and truly proud of their accomplishments, not because they are all the kids can do and you need some pride, but because they deserve your pride and appreciation?

I can’t tell you how it happens, but for most people, it does. The idea of spending my time mourning that Eli is Eli, and not something else seems bizarre to me.  I have a beautiful, funny, sweet and healthy kid, who I adore.  He does what he does, and what he can, and his accomplishments are no less natural to appreciate than the accomplishments of Simon.  Simon is bright and funny, but not at all athletically talented, but the idea that I would watch him playing sports and sit there thinking that I wish he was better at it is just as alien as my watching Eli do his things, and wishing he was otherwise.  That’s just not how I, and I think most people, experience our children.  Moreover, it is, I think, mostly impossible to live in this world, where people lose far more important things than assumptions about what a child should be able to do, without being grateful for the child you have.

 Those 60 children were surrounded by hundreds of parents, grandparents and siblings, aunts, uncles and cousins who arrived to celebrate the accomplishments of the kids they love.  As we arrived at the school, the heavens opened up, and as we cheered each class and each child, thunder rolled and tried to overpower us, and failed.  And what is remarkable about this is that watching the people around me, some of whom I know, and some of whom I do not, I saw no ambivalence – perhaps there was some, perhaps someone was putting on a brave face.  But in aggregate, it is impossible to imagine that most of those cheers and that applause that drowned out the storm came with internal hesitance – you simply cannot make that much joy and that much noise and show that much pride and love constrained by a sense of loss.

And that’s what I think makes me hopeful.  The students in that school come from every walk of life and every community.  Their parents and families are well off and educated, and poor and not.  The parents are typical consumers and recent immigrants and weirdos like us.  The parents and families are black and white, asian and hispanic, from everywhere.  Autism is a reality all over the world, and in many communities – there’s no picking and choosing here.  And I have no doubt that every parent, every grandparent and aunt and uncle, every cousin and brother and sister have at some moment thought “why is she this way?”  or “why did it have to be autism?” 

And yet, each of them (or most, at least) has also passed through that moment – accepted the things they don’t get to choose, that children come as children come, and reoriented themselves to find the blessings and delight, the hope for the future and the promise in those children.  They may have asked “why us?”  But then they moved on, accepting that this is their life, the way it is, and that joy comes, not despite the things we do not choose, but as part of them – new joys, new things we never expected.  The grandparents are just as excited when Nita sleeps over, the parents just as happy when their child learns to read, and we change our expectations, adapt our hopes, and they are just as fulfilling as the hopes we had before.

I don’t think I have to paint a picture of the analogy between having a disabled child and knowing that your way of life is about to shift radically.  Most of these parents did not choose their fate, just as we did not fully choose ours.  Most of them expected something else, dreamed of a future that was different.  But instead of writing memoirs wallowing in the grief of disappointment, each grandparent, each parent, each brother, aunt, sister, uncle was able to say “We have Lily, and we’re happy for and because of her.”  There is a time and place for disappointment, and a time and place for moving on, and all of them, or nearly all of them were able to do so.  This bodes well for us.

Asked, most of these parents probably would have said they could not handle a child with autism.  I suspect I would have as well.  And yet, when a child with autism came their way, they were not only able to “handle” it, but to make a life of joy and beauty, and moments of pure happiness and celebration out of that reality.  It can happen to all of us – and almost all of us manage, not just to survive, but to find new ways to be happy and grateful and feel that they got lucky.  Looking at that cross-section of people in the room, it seemed very clear that what they can do, a much larger cross-section of people can also do.  Perhaps not all, but more than many of us credit can move past the loss of something we’d expected, and into the ordinary work of finding joy in your life as it is.

At the end of the celebration, they bring up the children who are graduating.  Some will go on to mainstreaming, some have aged out of the program, or are moving or attending different programs.  This year, one of my son’s classmates, ”David”, who is very much attached to Eli (and Eli to him) aged out.  It was a difficult thing – his parents struggled to find an appropriate placement, and David was very scared at the thought of leaving the school he’d attended for five years – transitions are difficult for these kids, and graduation day was a tough one.

David cried through the first part of the program – you could watch the tears rolling down his cheeks and see what a difficult day this was for him.  For a kid with autism, this could easily result in a tantrum, or simple panic – hundreds of people staring at you and making a lot of noise is a lot of stimulation at the best of times, and this was hardly that.  His teacher had confided she didn’t know if he’d make it when the time came for him to come up and face the crowd as a graduate – that in practice, he had refused to go up, and been panicked by the very thought, even just facing his classmates and teachers, at bringing school to an end so publically.

As the oldest child, and the last one called, we waited, in that hot, noisy, crowded room, with thunder rolling overhead as they called David’s name.  People applauded, and more noise was added.  The aide assigned to him, already crying at the thought of David’s leaving, led him down the aisle to the stage. He was holding her hand and looking scared as he walked, but he climbed up.  He landed on the center stage, facing away from the crowd, with his back to us.  He stood that way for a moment, and the school’s director moved to guide him, to remind him that he was supposed to face us all.  But David didn’t need it.  He took his certificate of graduation from her, and all by himself, he turned around, and smiled radiantly at all of us.  We cheered and applauded, yelled and called his name out loud.  And David took in all the noise, all the people filled with pride and joy, who cheered as you cheer someone who has won the marathon, who has passed his limits and gone on and done more than you thought they could, who has made you dream new dreams and hope for new things.  And David joined in all our joy for him, and  took a bow.

Sharon

Independence Days Update: Harvest of Beginnings

Sharon August 24th, 2009

Perhaps the easiest part of my conversion to Judaism was the shift to the New Year beginning in autumn.  Perhaps because I spent so many years in school as both student and teacher, or perhaps because I don’t like hot weather much, but somehow, when the cool breeze of autumn blows in, the world seems entirely new again.  Actually, for me, it isn’t the breezes that bring in autumn, but that last declining week of August, when it is time to begin shifting my way of thinking over to the new schedule and realities.  One spend the Hebrew month of Elul getting ready for the holiday season – and in the Northeast, the whole world is perched on the verge of a massive shift, away from the idea that summer can linger forever, and back into the reality of the coming of winter.

For some people this might be depressing, some kind of Keatian “To Autumn” death and destruction thing, but I like winter, even if it has a measure of harshness.  This morning we woke to a cool breeze and the first night I’ve wanted a quilt for a while, knowing that summer may linger, but it is time to move on.

Fortunately, the produce of summer will linger for a good while – the heat has brought on the tomatoes and peppers and eggplant, and it is time for full scale preserving.  I’m putting up the last of the peaches and blueberries, making pickles like mad, and dehydrating zucchini and squash.  The peppermint is in flower and the early apples are ready – you have to make those into sauce, because they don’t last – or eat them out of hand, but what a pleasure.  The apples, too, are a reminder that summer is on the wane and autumn is icumen on.

We had a busy but delightful week – my favorite part was a picnic with friends that ended with the children brought back to our friends’ home to bathe and hear bedtime stories with them before we headed back to our place. I missed the best moment, where my friend’s five year old daughter took Asher off to be bathed, started his bath, settled him, and then apparently performed a nude interpretive dance for his benefit, in the tub.  At some point, of course, we’ll have to nip this sort of habit ;-) , but at five and three, its just plain adorable.

Not much else going on here, except that one of the new chickens has decided she’s an oxpecker and the goats are small rhinos.  She’s a cochin bantam, a tiny 8 week old handful of chicken who was thrown in with my much larger Cuckoo Marans and Rocks, and she’s decided her place is riding on the goat’s back.  They don’t seem to mind, and it does look very African Savanna, or at least as close as it gets out here in rural New York.

We’re starting the countdown to goatbabies – Selene has bagged up (that is, she has milk in her teats) and we’re guessing she’ll come first, since she’s substantially bigger than Maia.  Our best bet is mid-Septemberish, but they were in with a buck for two months, so who knows.  I admit, I can’t wait!

Plant something: Spinach, arugula, peas for pea shoots, lettuces, 3 tiny ginko trees I dug out of someone’s yard into a nursery bed.

Harvest something: Tomatoes, hot peppers, sweet peppers, eggplant, cucumbers, zucchini, summer squash, blueberries, raspberries, beets, carrots, chard, turnips, turnip greens, collards, kale, mustard, peppermint, feverfew, burdock root, green beans, asparagus bean, yarrow, mongolian yarrow, comfrey, eggs, milk.

Preserve something: Pickled cucumbers, made zucchini relish, dehydrated zucchini, canned summer squash casserole, dried herbs, tinctured herbs, made blueberry jam, made raspberry vodka.

Waste Not: Made hay bale cold frames from last year’s hay, let cats into food storage room for a while to make sure that it smells like cat before inevitable attempt by really dumb mice to enter our home in cold weather, decided that the wastage of having bedwetting son wear cloth protectants and soak through nightly, requiring me to wash them and all the bedding, was probably less than one eco-friendly pull up per night.

Want Not: Bought sock and underwear for kids and spouse, two bags of yard saled clothes for Eli to grow into, more tea for storage and shoes (Do other people’s children lose shoes? Simon lost a sandal in a pond and a set of sneakers at camp in the same week.  Eli sheds them constantly.  Asher told me he hid his sneakers – and we’ve yet to find them.  Not to mention the outgrowing!)

Build Community Food Systems: Did a site analysis for a community garden and made the case at a local zoning board. 

Eat the Food: Made pasta with ripe tomatoes, olives and pickled jalapenos in a roasted garlic sauce that was spectacular.  I have no idea what was in it – we just threw random stuff in, but boy was it good.  Also a really nice fava bean salad with chipotles.

How about you?

Sharon