Archive for the 'adapting in place' Category

Best Two Falls Out of Three: Wrestling with Temptation, Discipline and Self-Denial

Sharon December 14th, 2008

When we were first planning on moving to a farm in this area, we came very close to buying a gorgeous little farm in an Amish neighborhood a bit west of where we did buy.  The house was Amish built and fairly new, with four small bedrooms and large open public spaces (it looked pretty much like every other Amish home I’ve been in, if that’s a useful image for anyone), with a medium sized pole barn and 10 acres, fenced for livestock.  It was lovely.  It was under 25K (yep, you saw that right!).  I wanted to buy it - and my husband said “No way.”

But, I argued, we can add electricity and indoor plumbing gradually.  I appealed to his innate cheapness - we’d have no debt, we’d have money to put into the house straight off.  We’d adapt.  My husband’s reaction was  not just no, but “No!”  And we ended up spending considerably more money for the house we have now (which is wonderful and lovely too).

Now cheapness was only part of the reason I wanted this house so very much.  There was a deeper reason.  You see, self-discipline is not my middle name.  My reaction to “would you like a cookie” is almost always “sure,” with predictable effects.  I can justify all sorts of things with the reasoning that “this time is an exception.”  And, of course, I start noticing after a while how often the exceptions add up.    And my husband is not too different from me - he particularly hates raining on anyone else’s parade, so he’ll happily say “well, of course, honey, if you’re tired….” 

This lack of natural capacity for self-denial means that I work best if there are firm, hard rules, no exceptions (outside of the usual extraordinary circumstances) and mechanisms for enforcement.  Ideally those mechanisms are external, because the problem with making the rules for yourself is that you know the person who made them ;-)

What I really wanted the non-electric home for was simply the experience of not being able to flick on a light, not being able to turn up the heat, not being able to do things the easy way.  I knew we probably would add electricity at some point, ideally renewable,  but I felt that we might be able to add only those things that really mattered to us, very gradually, and to carefully pick and choose what uses of energy were essential to us.  I felt (and still feel) that would be the best way for me personally to go about reducing my impact.

You see, for a long time I didn’t have a lot of conveniences. I was a poor graduate student in a city.  I had no car, I had no washing machine, I had very little money. So, for example, I did laundry quite infrequently - I washed out underwear in the sink, wore my clothes a fair while, and when I could work up energy and money, I piled all my laundry in a sack, slung the heavy load on my back and hauled it a long quarter mile to the laundromat, and then hauled it back, often cussing all the way.

But the funny thing is that if you’d asked me whether my laundry situation was a major burden, I’d have laughed.  99% of the time I never thought much about what a pain it was to do the laundry - and the other !%, well, it was annoying, it was a pain, but it didn’t really matter that much, even when it was cold, even when the laundry was heavy, even when I didn’t like it.  After all, every life has bits we don’t enjoy, right?  Sometimes those bits really are a drag, but more often, they really aren’t that big a deal.  Now for some people, this would have been a big deal - someone who couldn’t haul their laundry or pull a cart, for example.  And yet, I think about all the elderly ladies in New York City who do just this - perhaps for some it is a huge burden, but don’t they also suggest that even in old age we might be able to find ways to do with less? 

Well, the first time I lived with an actual washer-dryer in my own house and didn’t save up coins, I was amazed by how wonderful it was.  And… how often everything suddenly seemed to need washing.  Now I knew I hadn’t always washed my clothes that often, and as far as I could remember, people didn’t sidle away because I smelled bad.  I knew my towels had usually been washed monthly.  But somehow, no matter how I tried, I never could (and still can’t) quite get my laundry down to the level of washing that I did (proportionally - with kids things are a bit different, but even a rough approximation per person) before I had a machine.  I just can’t - and I’ve been trying for a long time now.

The same thing is true of life without a car.  It had its hassles and hardships.  And I used to walk long distances quite routinely, sometimes in terrible weather.  I know that I’m perfectly capable of covering a few miles on foot without any major hardship - but even allowing some level of adaptation for children, I find it very hard not to use the car on occasions when it would be somewhat inconvenient not to.  That is, I find it hard to live in the mindset that allows me to make enough time to put the kids in the strollers and walk the four miles to the library.  More often, I find myself rushing about and saying “oh, gosh, we’re late, we have to take the car.”

I do it sometimes - we keep our driving quite low, using just over 80% less gas than the American average.  And by American standards, I wash probably less than most people.  But I also know that in the absence of the option of driving, I would make time to get there on foot.  In the absence of the washer, I would find less laundry. 

Yesterday, I broke the Sabbath by working.  I had a good reason, of course - I have a book deadline in less than two weeks, and I’m getting a little panicky that the manuscript might not be ready in time.  It is a perfectly decent reason for doing something I shouldn’t - except that I know that if I truly treated the Sabbath as inviolable, I’d have found a way to make sure that the book was further along.  I know that somewhere in the back of my head, I had already allowed myself “well, if things get really dire, I could always break the Sabbath.”  And that’s not exactly one of my proudest moments. 

I know there are people out there who can simply say “well, we park the car and use our bikes every time.”  For me, it is more like, “we park the car and can use our bikes about half the time it would be possible to.”  I’m always impressed by people who manage to have the “out” sitting right there and say no to it - sometimes I do, and sometimes, I don’t.

I do have self-discipline about some things - I won’t turn the heat rather than put on a layer, I generally won’t fly, even when people offer me a lot of money to come talk at their events, I won’t tell someone I think they are right just to keep the peace.  But it is a constant struggle with temptation.  And I find myself attracted, yet again, to absolute solutions - longing for a life where the easy ways out don’t even exist for me.

I thought about that recently as my friend Shasha writes about her move to an Amish farm which may or may not end up having to have electricity.  I admit, I envy her - most of all, I envy her the structural realities of a life without easy ways out.  I am curious - would I find them so burdensome that I’d seek out easier solutions?  Or would I find myself content with these lower energy, simpler choices?  I don’t know - and I can’t know without experimentation - but the experiments require major changes.

Every life, no matter how plain, requires self-discipline too, and I’d probably suffer some failures of that along the way.  Early this year, my washing machine, after an extended period of shredding my laundry every time I washed, conked out, and we were forced to consider whether to invest in a new, frontloading washing machine or a James Handwasher.  The frontloader won, and I don’t have a lot of regrets - maybe after everyone is 100% night dry, but with two using diapers at least part of the time and the occasional bedwetting, I don’t really want to handwash.  But I still wonder whether my estimation of the benefits of the washer was correct.  We have let other appliances break and not be replaced - and often haven’t really minded the lack.  For now I’m still a washing machine person, but the nagging sense that I can’t really fully evaluate my want/need for it in its presence has never gone away.

I grew up in the outer suburbs of Boston, in a small city that is now a regular commuting venue, but that in the 1980s was far out enough to be cheap.  My father never owned a car during most of his adult life, and despite the fact that we lived on the outskirts of everything, I grew up being able to get pretty much anywhere without one.  It might involve two buses and a commuter train, along with my bike, but I could and did get to outer suburbs all the time from my outer suburb.  It meant checking schedules, coordinating trips with other people, and often, standing around waiting for trains - but since I’d spent my whole childhood waiting for one bus or train or another (my father did not allow his residency in a cheap area to deny him or his family any of the pleasures of the city - we went everywhere, constantly), I don’t think I even noticed.  If I think of those days, it is longingly, of life without the hassles of car ownership.  I know that standing, waiting for a late train in February wasn’t fun - but that kind of “not fun” didn’t really matter much in the overall scheme of things.  I know that doing without things won’t always be fun - but how do I know how much that displeasure will actually count?

When we moved to the country we “had to” have a vehicle.  We’ve struggled to find good ways to balance the mobility we really need with the mobility we simply want - and to find ways to reduce temptation while upping our self-discipline.  At one pont, we were able to barter with neighbors to share a car - and knowing that we only had the vehicle on specific days made us more careful with our use.  For now, we only have one small car - the six of us cram (safely) into a Ford Taurus.  We look like clowns getting out of our tiny car - but it means we use less gas, and have to seriously consider whether it is worth being crammed to make longer trips.  It encourages us to use public transportation for visiting family and to skip unnecessary trips. 

And sometimes I wonder if we really ”have to” have a vehicle - could we combine a combination of two electric assist rickshaw bikes, a pre-made barter arrangement with our friend with a truck (for when the goats or hay must be hauled) and a shared commute for Eric?  I’m tempted sometimes to try it - and a little cautious about giving up my conveniences too.  I know someday we may have no choice but to give up the car - shouldn’t I be prepared for that?  Perhaps that will be our next project.

Culturally, we tend not to have a lot of respect for people who lack self-discipline, or a lot of concern about the idea of temptation.  We have decided, for example, that rules about avoiding sexual temptation, for example are outdated - we should, instead, rely primarily on our own self-discipline.  Thus, older ideas of modesty (which of course have their problems, since they often were primarily emphasized for women) and restraint have fallen away - to be replaced primarily with self restraint.  The only problem is, we don’t have much.

The same thing is true with technologies - we are told that there’s no point in objecting to a technology, or suggesting we shouldn’t go down certain technical avenues - no one has to have a cell phone or a car or a whatever.  The problem is that a narrative that says so presumes that we do have a cultural basis for self-denial, that we’ve been taught how to say no, how to think critically about our technologies, or, for that matter, about sex.  It assumes that we’ve been taught to value self restraint. 

There are real merits to self-denial and real pleasures in it, and not just austere ones, or the pleasures of being self-righteous.  That is, I genuinely think my life without a car would be better, more enjoyable, more fun than my life with one.  The economic, personal, time and social costs of the car - and certainly the costs of a car-based society are simply too high.  But not only do most of us not realize that cars actually take more time and money than they return, but most of us have never in our lives been asked to think about what self-discipline might do for us, whether it has any merits, other than the ability to sniff down your nose at someone not as austere.  In fact, the accusation of self-righteousness often completely undermines any discussion of self-limitation, simply because we cannot imagine that there are other merits involved.

There is certainly plenty of truth in the statement that I need more personal self-discipline, or that I can’t blame the fact that I eat too many cookies on the culture as a whole.  And I don’t.  But in a culture that dismisses the idea that temptation is a problem, that we might begin addressing our deepest social problems by restricting our capacity to give way to our worst selves, it is very hard to even begin to find a way at those problems.

I don’t know how many people struggle with this question of self-discipline, but I’d suspect a lot.  Figuring out solutions for myself and my family involve a range of strategies.  First, some creative deprivation - I think often the best way to use the minimum is not to have any choice.    The one bright side of our current economic crisis is that many of us may get some chance to explore creative deprivation - and we saw that last time we had a Depression, the habits of thrift and care lasted far longer than the Depression - our grandparents kept living the way they had to, in many cases, simply because they couldn’t imagine anything else - everything else seems too extravagant.

The second shift is the need for self-discipline - sometimes it isn’t good to take the cookie.  I need to work on the ability to “say no” and to find the immutable wall in myself that says “these rules aren’t just mine” - sometimes I get there by realizing the rules are God’s, sometimes by realizing that my actions affect other people, sometimes by simply promising that there will still be cookies later, and that I’ll be happier this way.  I’m working on the idea that self-denial has its own pleasures and satisfactions, that quieting that nagging sense that I’ve cheated - not just cheated on the rules, but cheated myself.  This week, I cheated myself out of the restoration that the Sabbath would bring me by not arranging my life for it.  I think sometimes I may have cheated myself out of knowing what I can actually do, by making my own life a little too easy.

I don’t think it is necessary to have a religious faith to exercise self-denial, but I don’t think it hurts - the idea that there are limits that are not of your own personal setting, and the creation of a community to explore them in,  is useful to me, at least.  And I’m reminded of a story that Scott Savage tells in _The Plain Reader_ he writes:

A story that appeared a number of years ago in the Amish publication _Family Life_ told of a busload of tourisst who visited an Amish farmer.  The group consisted of people from many religious denominations.  One of them said, “We already know all about Jesus Christ, but what does it mean to be Amish?”  The Amish fellow thought for a minute and then asked for a show of hands for how many in the tour group had televisions.  Every hand went up.  Then he asked how many thought that maybe having a television contributed to a lot of social and spiritual problems in society.  Again, every hand went up.  In light of this, he asked, how many would be willing to give up having television?  This time, no hands went up.  He went on to explain that this was the essence of being Amish: a willingness to do without something if that thing is not good for them spiritually.

The Amish do so with both the force of community and the force of faith behind them.  My own suspicions that I’d be better off without a car exist, not in complete isolation, but outside a unified cultural sense that cars are harmful - even though we know they are.   We are not all going to share Amish religious convictions - but I wonder if there is a way to translate some of their culture of self-limitation into a secular reality?

I know that the Amish relationship to the technologies they choose to use and those they choose not is probably the right one for most of us - don’t mistake me - I’m not saying we should all be Amish.  But the idea that we should look at our possessions, our technologies, our work and everything that structures our lives and ask ourselves whether it is good for us, is, I think, right.

But that’s not enough - the best and most ethical of us will find it hard to do this in isolation.  By ourselves, on our country road, it is painfully hard to imagine asking others to help us live without a car - or simply use ours less -  even if we were to trade or barter with them.  The burden of inconveniencing others in a project that they do not share or value seems high, perhaps too high.  In a community where many people wanted or needed to use their cars less, or even get rid of them, we could feel ourselves full participants, share strategies for reducing temptation, give back as we get.  It is a conundrum and a nut we have yet to crack.

I don’t know all the answers - I do know that the problem of temptation in our society needs some exploration and analysis.  We need to find ways to begin our discussions not from the point that all of us ought to live as perfect paragons of self-discipline, but that we might, at the same time we improve our practices, and explore the pleasures and merits of self-denial, but also wrestle with the enormously vexed question of managing temptation.


Making a Future for the Disabled: Facing Hard Times With Special Needs Kids

Sharon December 10th, 2008

Yesterday morning, Eli put on snowpants and boots before he went outside.  This was a big accomplishment for him - for years we’ve been struggling to balance his need to be outside in all sorts of weather with the fact that he really doesn’t like socks, shoes or shirts that much.  In June, this is no problem, but as the world gets colder, each year we have to struggle with the “Eli, you have to be dressed before you go out, and yes, you actually have to keep the clothes on.” 

But this year he really got it - we had some snow last weekend, and Eli got that the snowpants helped keep him dry, so when he wanted to go out to play in the fenced yard,  he put on snowpants, all by himself.  Now the little hitch in this story is that the snowpants were his three year old brother, Asher’s, and he could only get part way into them. Eli, at 4′8 is a strapping young man, and you can just imagine how the toddler pants fit.   And then the boots that he found were his Dad’s.  Oh, and he only found one of them.  So Eric found him outside on the front porch, hopping as best he could in a 3 year old’s snowpants and one giant boot.  And the snow had mostly melted.  But still.

Now we laughed (because we knew he would forgive us) but silly as it looked, this was a huge accomplishment for Eli, and while we were finding appropriate weather gear and helping him get it on, we told him how terrifically proud of him we were - and we were.

If you had to describe me, the words “wordy” “overeducated” and “overthinker” probably wouldn’t be wildly inappropriate.  I think some part of me assumed that my kids would live in language, as I do, like fish in water.  Instead, I got a little boy for whom language is a mystery, who fits into words about as well as he fit into those boots and snowpants.  He’s healthy, happy, funny and athletic - but words are not his thing, and probably never will be.  The odds are good that he’ll always need his parents or some other family member to help him navigate the world, at least some of the time.  Having an autistic kid is rather like going to the shelter to adopt an puppy, and coming home with a kitten.  It isn’t that kittens are bad - they are terrific - but if you go around thinking that you are going to get it to walk on a leash and bark for you, you are in for a rough time.

But that, at least for me, is the great gift of having a disabled child as well.  Because while having your puppy meow can be shocking and overwhelming, especially for parents who deal with much tougher permutations or deep health issues - it also does a lot to help you recognize what really matters - and that spills over into your worldview and tends to mellow it.  It is hard to spend a lot of time worrying that one kid might get into a second tier college, or might not make first string soccer, while you are getting really excited because your 11 year old finally walked himself to the bathroom with his crutches.  Disabled kids have their challenges, but they also get you right down to brass tacks - because of Eli I know that I’ll be thrilled if each of my boys is a good man, a mensch, does good work in the world and grows to fulfill their potential.  This is truly a gift - it is immensely freeing, and frankly, it saves a lot of time and energy.

But being freed from expectations doesn’t mean that facing a shifting world with kids with disabilities isn’t hard.  There are plenty of pleasures and compensations for most of us, but they can’t override the basic fear that a world already hard for our kids, is about to get less hospitable.

I’m grateful to a single mother who jump-started this post about what to do  by sending me part of a lovely piece she’d written on the subject of adapting with her two special-needs daughters, one with a potentially life-threatening condition.  This is what she wrote:

Like many parents of special needs children, I wonder - and worry - a lot about what effect this strange new world we are racing into will have on our sons and daughters. So many wonderful advances had been made in how we teach non-typically developing children and so many new technologies make life easier for people will all sorts of handicaps. What will happen when the battery powered wheelchairs can’t be recharged? When the school buses stop running? When the less common drugs are unprofitable to manufacture? When the time need for a theory routine is need for gardening for wood chopping?

Then, last night, I had an epiphany. It doesn’t answer any of my questions, but it gave me a bit of comfort that I’d like to share with others.

My older daughter was getting ready to babysit with her girl scout troop, and as she went through the toy closet, she pulled out a copy of Pizza Party, a game for young children where each player has a cardboard slice of pizza with holes in it, and fills it with circles representing different topping in order to complete a slice. A couple of years ago, she’d adapted it to play with a blind friend, cutting pieces of paper, cloth and sandpaper to represent three of the four topping and gluing them onto the pieces. Every time they played there were lots of jokes about eating sandpaper pizza.

I realized that families (and friends) of special needs children are all ready used to adapting, as are adults who themselves have special needs. We look at the bits and pieces of daily life - from socks to knives and forks to stair to backpacks to toilets to homework routines and lunch packing - and find different way of doing things that are better for us. And because children grow and change, we have to keep changing how we do things. This goes for all children, of course, but for some parents, making the transition from finger food to cutlery means proving a spoon at the right time, and for others, finding the spoon with just the correct angle between the bowl and the handle, or bending a spoon, drilling a hole in the handle and wedging a peg in to provide a better grip.

And we learn to adapt on the fly - in restaurants, at friends’ houses, school picnics - anywhere our child wants to do something and we need to make a change. And later, if we are lucky, our children start making suggestions and fixing things on their own.

We do this until it becomes second nature for us - and other members of our families. I didn’t have to tell my older daughter how to fix the game so her friend could play it. She didn’t even ask if she could, just got what she needed and set to.

It’s nice to think that this ability to see that we need a different way of doing things will help us in the days to come.

I’ve found what she has - that the practice of living in a world we didn’t expect, of shifting to a different worldview and dealing with crisis as a routine part of my life, has, I think helped me adapt. 

Now don’t get me wrong - there’s a lot to be worried about in raising a kid with disabilities in a changing world.  But I do think it is worth starting with the assets, the benefits and the gifts.  I say this for several reasons.  The first is that I think those of us who have special needs kids have already had a kind of boot camp in adapting to shifting realities.  Unlike a parent who always knows what is coming next - first they crawled, then they walked, then they ran - we’ve gotten used to not knowing. 

The other reason is that we live in a society that so deeply undervalues the disabled and overestimates their burdens (and this is not to underestimate them - I realize many parents have children who are much more demanding than I do).  I think this is best epitomized in our reproductive culture, where the risk of having a disabled child (discoverable by amniocentesis) is listed as equivalent to the risk of late miscarriage/early stillbirth caused by amniocentesis itself.  That is, pregnant women are told that losing their wanted pregnancy at 16-18 weeks is a worthwhile risk, because otherwise, are just as likely to have a disabled child.  That is, our reproductive culture says that having your baby die and be born with Down’s syndrome or spina bifida are equivalent losses.  This is just one example of the thousands of ways we learn that having a child with a disability is bad, wrong, to be avoided at all costs. 

Many parents who choose to bear or adopt a child they know will be disabled are strongly discouraged - they are told over and over again that such a child will be an unbearable burden, that the burden will be a one-sided destructive force.  When parents discover an unsuspected disability, often the assumption is that the child is a total loss to the family, a disaster they have to bear up under.  My claim is not that the blessings of such children always compensate for the losses - what I’m trying to get at is that our society so heavily overestimates the suffering caused by a disabled child that I think it is urgent to recognize that such children do not exist solely as a drag on their families.  The assumption that such children will inevitably cost their siblings goes along with the idea that disabled children are a burden - and there’s some truth - they do cost their siblings something sometimes.  And they return something to them.

When Simon was small, he was terrified of the dark.  From very early on, he and Eli slept together - at first I couldn’t keep Eli from climbing in his crib, and by the time Simon was old enough to sleep in a bed, the two were inseperable at night.  My fearful, non-disabled younger son relied on the stability, warmth and comfort of his not-at-all fearful older brother.  When Simon awoke in the night, if Eli’s body was not nearby, he would cry out “I need E-li!!!!”  At no point in any of my children’s lives has the relationship ever worked one way, one child giving, the other taking - reciprocity is not always even, but it is always present, and has been present in the lives of most families of disabled children I know. 

This is important because as our society becomes less wealthy, and as certain kinds of reproductive healthcare become less part of many people’s lives, more of us will have disabled children - the idea of choosing whether to give birth to a child with a disability will probably not disappear entirely, but there is a very good chance that those options will be the territory of an increasingly small number of wealthy people.  And if times get hard enough, we will probably see more children who are damaged by drugs and alcohol, and more children who have disabilities that might have been minimized or repaired by costly medical treatment, but who now have no access to such treatment. 

One of the things we can and I think must do - for our own sakes and for the parents who come after us, is do what we can to change the assumption that disabled children a disaster, so huge a disaster that anything would be worse than having them.  This belief burdens parents, children, siblings, and it subtly shapes the culture in destructive ways - not just for disabled children, but for anyone who becomes disabled by illness or age. 

Ok, beyond appreciating what you can appreciate (and I know I have this one easy - my child is physically healthy and responsive to me - for many people the bright side can be harder to find, and I truly understand that), what kind of preparations for the future should we be making for our disabled kids?  What new challenges might we face, and how might we deal with them?

1. I would expect to see services decline and be disrupted in many cases.  To the extent that’s possible, most of us should have contingency plans and the ability to keep some of our kids’ programs going ourselves, or with help.

- To some degree, services for disabled children will likely be among the last things to go in school systems, because in the US, the Americans with Disabilities Act mandates special needs services.  In the early stages, parents may have to act as advocates for their kids.  But in places where there are no funds, and without a rapid federal response, services will be cut eventually. Even suing won’t make money magically appear.   Moreover, increasing numbers of climate change related natural disasters may close schools.  This means the huge and overwhelming burden of helping your kids learn to function in the world may fall on parents and extended family members.  That means learning now how to meet as many of their needs as possible - attend parent trainings, watch your child’s therapists, talk to them about dealing with disruptions.  Consider recruiting help - grandparents, college students, teenagers, neighbors - anyone good with disabled kids might be able to learn to provide some support, and take the burden off of parents.   I realize none of this is easy, especially for families facing more, not less economic pressure.  And being your kid’s therapist is not a delight.  But we do have to face the reality that we may have to do some of this work - or find ways to get others to do it.

2.  Financial planning for your child’s future is not sufficient - the money may not be there when your child needs it.  Make backup plans for kids’ longterm future that rely on people rather than funds.  Start preparing family members, including kids, for this reality early.

- We can see this now - the money we’ve been saving for our kids is disappearing rapidly. That means that instead of expecting our kids to live in an apartment with paid help after we’re gone, our kids may need to rely on an aunt or a sibling.  We need to talk about this, and make plans.  And our other children, or nieces and nephews need to understand - gently, lovingly, age appropriately - that we parents will bear the responsibility of our children as long and as fully as we can, but that someday, their sister or brother or cousin may need their help.  In our society, we tend to see this as unfair - and it is, a little.  But the truth is having responsibility for others is not only a burden.  We can and should teach our non-disabled kids to view it this way - while also keeping too-heavy responsibilities off their shoulders as long as we can.  It is a balancing act - but an important one.

3. Work as hard as you can now to help your child achieve their full, functional potential.  We need to make sure that our kids can do everything they are able to for themselves, and return as much as they can for others.  In some ways, the coming shifts may not be bad for some kids - those with intellectual limitations may find that they do better in a society that emphasizes practical skills more than this one.  Kids need to be taught the value of hard work and discipline (this is easier said than done with some kids, I know), and be taught to participate in their world.  Start early on whatever practical skills your child can manage.  The difference between a burden and a responsibility is a child who learns to contribute to the extent of their abilities.  Children should be taught a trade when possible, certainly to participate in household and family activities.  Children who are going to receive must also learn to give.

4. For children who depend on high-cost health care, begin now making contingency plans to keep that coming.  My hope is that we get some form of universal health care out of Obama’s “let’s hurl money at the problem” plan.  If not, all of us are going to have to be advocates who get to know the resources available very well - many of us already are, but as resources get more limited, making sure our kids get their basic needs met becomes more and more essential. Now is the time to talk to your doctor about ways to get an extra reserve of medications, to your utility about making sure you don’t shut off electricty to a child who depends on it. Now is the time to talk to your hospital and your community about ensuring health care for the most vulnerable.

5. Forgive yourself for your limitations as a parent.  This has been something of a challenge for us - early on we decided that we would not be the kind of parents of an autistic child who devote their whole existance to that child, to “overcoming” autism.  We explicitly decided that after Eli’s many hours of therapy and training, he should come home to playtime and family time, and to being a participant in our family, rather than the center of our world.  I still believe this, but that doesn’t mean that I don’t sometimes wonder whether we made the wrong choice, if Eli would be more functional if we worked with him constantly and shifted our focus.  As times get more difficult, parents are likely to have to try and take the place of more professionals - and, frankly, we’re likely to fail sometimes.  What we don’t won’t be as good as the army of speech therapists and physical therapists.  It won’t be perfect.  Our kids may not go as far as they could have in a richer world where everything was better.  Or they may go further in different directions.  But the truth is that if we’ve done what we can, we’ve done what we can, and beating ourselves up for our imperfections is a waste of time.

6. Don’t isolate your child from the community.  I know a mother of a recently-diagnosed autistic preschooler who tells me “we never go anywhere, we can’t take him anywhere, he does weird things, he has trantrums…”  This is the wrong approach, no matter how hard, how embarassing, how uncomfortable it is, your child needs her community desperately - we don’t know what the future is going to bring, but all of us are going to need community.  So as difficult as it is to load up the wheelchair, as uncomfortable as it is to take out a child who has tantrums, as hard as it is to ask for help or to ask the neighbor kids to include your child - we have to.  We have to find ways for our children to participate in our society, so that when our communities come together, it will be as natural to include them as it can be.  The same is true with extended families, biological and chosen - your kids will need their family, and the people who love them.

7. If you are preparing, invest in adaptive strategies that will make your life easier.  The best money we ever spent in our lives was the inheritance from my husband’s grandparents we spent on fencing our front yard - now I can be gardening without looking up in panic and wondering where Eli has wandered to.  To the extent you can, make your own life and your child’s life easier - make the barn wheelchair accessible, get the assistive devices or dog.  And don’t let what you hope will be blind you to the reality that you may have to deal with things as they are now - no matter how much you hope your child will toilet train before the apocalypse, get some large-sized cloth diapers.  Be prepared to go forward from where you are.

8. Despite my focus on the benefits, I don’t want to include too much sentimental bullshit here - the idea that G-d never gives you more than you can handle is, to my mind, so much crap - plenty of people, including me, are regularly over their limits.  Yes, you need to love your kids and appreciate them for what they are.  But remember, you also get to complain.  So does your spouse and so do their siblings.  You don’t have to be constantly happy and feel blessed - I’m a Jew, and in my faith, whining is a sacrament.  It is ok to be angry, be sad (and for those who may actually lose children in this, I can’t imagine walking in your shoes, and you don’t need my permission), to be pissed at G-d or the universe or fate, to be overwhelmed, to screw up.  This is hard stuff sometimes. Even when it is mostly good, sometimes it sucks - and the best way to drive yourself crazy is to deny.  Every parent of a disabled kid needs some good friends with shoulders to cry on, some people who will help out when you can’t take it any more, a certain measure of self-forgiveness, an outlet to distract yourself when you can’t take it anymore, and the ability to make a good Margarita or three.

I’m sure other parents in other circumstances have additional suggestions.  I hope this helps someone, I really do. 



The Competence Project

Sharon November 5th, 2008

A human being should be able to change a diaper, plan an invasion, butcher a hog, conn a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects. -Robert A. Heinlein

I have an embarassing confession to make - I’m not handy at all, and I have absolutely no excuse for it.  You see, unlike my husband, who grew up in an apartment where a super handled any fixing, I grew up with two parents who were both extremely handy.  There was my Dad, who smelted his own bullets in our furnace, fixed things and taught me to handle a knife, an axe and screwdriver early on.  And, just in case I should try and get away with whining that I didn’t learn because I was a girl (total nonsense, my Dad would have had no truck with that), my step-mother is an extremely talented woodworker, who I got to watch renovate our home more or less by herself through my whole adolescence.  Sue is incredibly talented - I have beautiful bookcases, my sons have beautiful wooden toys and a gorgeous toy box - and whenever she comes to my house, runs about fixing everything that Eric and I are ignoring.  She tried hard to pass on her skills - and it didn’t take.  As a teenager, I was busy getting ready to live the life of the mind - the fact that even minds get broken toilets and funky wiring didn’t really register until after I left home.

Basically, the reason I’m not handy is that I’ve never bothered to really get the skill set in any coherent way - somehow when I was younger I wasn’t paying enough attention and didn’t realize what I was missing out on, and then I was busy getting other skill sets into order - busy learning gardening and farming, food preservation and mending (all, btw, skills I could have gotten from someone I was related to, but mostly didn’t - I sometimes wonder what the heck I was doing during my adolescence). 

Eric has the same lacks, with better excuse, although it is more embarassing for him, since he’s a guy, and thus “supposed to” know how to build stuff and fix things - particularly out in these parts where most of my neighbors pretty much could build their own houses from scratch with a McGyver-like collection of odds and ends.  We could probably make a plastic model of a house out of my son’s legos - but I wouldn’t bet on it not falling over.  We joke that there are two kinds of people in the world - the ones who have a window that won’t open and immediately rush over to fix it, because it shouldn’t be that way, and those who say “ok, I’ll just open the other window.”  We’re both the second kind, and there’s a price to that kind of laziness.

Now we’ve both been forced to learn some basics - we’ve gotten fairly good at small engine repair maintaining the ratty riding mower and the rag tag cars we’ve had over the years, and we can build simple, box shaped things.  They tend to look a little funny, though.  For a while I avoided most woodworking because I was pretty constantly pregnant or nursing and didn’t want the chemical exposure (and yes, I know there are ecological options out there), but that’s not been a good excuse for a while yet. 

And one of my New Year’s resolutions (yeah, I know it is only November, but we Jews get our New Year early) is to fix this gap.  Time for me to really understand how things go together, and get handy - at least enough.  I keep putting it off, though, because I really hate feeling incompetent. I remember when I first was learning to knit - I knew that eventually it would become as natural as breathing, but boy did I hate every single second of the period before it did - it was so frustrating, so maddening.  Why couldn’t I get good faster, dammit?!!  I don’t like to be bad at things - and of course, a period of being bad at things is required in order to get good.  It is easier not to try, to complain I can’t do it.

This was banged home to me the other day, when Isaiah, who is nearing five and in kindergarten, echoed my own internal whining.  You see, Isaiah is learning to read - and it isn’t his favorite thing.  He’s a natural at math and science, but unlike his big brother Simon, who picked up reading at 3 and never looked back, this language stuff is work for Isaiah.  Now don’t get me wrong - we’re in no hurry, and we’re not pushing him hard - he’s not even five yet, and we believe it is perfectly normal for him not to read for a while yet.  But we do require that he practice his letters and pre-reading activities, and do a little bit of practice sounding things out - maybe 10 minutes a day in total.

Well, yesterday, Isaiah told me that “I’ll do my reading work tomorrow.  Or the next day.  I’m not very good at it.”  I told him that I thought he was doing just fine, actually - that he was doing very well for his age.  And he told me that he liked math better, because it was easy, and he liked being good at things, so he didn’t want to learn to read if it meant not being good.  Well, out of the mouths of babes, as they say.

And I heard myself telling Isaiah that while it was ok that he didn’t want to read yet, that reading wasn’t one of that category of things that it matters much whether you are naturally talented or not - everyone needs to learn.  Barring some very serious disabilities, we pretty much accept that everyone is supposed to learn to read, and reasonably well (we’ll ignore the question of whether this happens or not).  I heard myself saying gently that there are certain things everyone needs to know, and reading is one of them.

And, of course, fixing things and being able to adapt your basic environment is too.  And of course, I don’t want my kids picking up the notion that learning how to do that isn’t just as important as learning how to read.  I want them to be as competent as they can be with language and with tools.  I was struck by my own cowardice - like Isaiah, I don’t want to be bad at it, so it is easier not to do it.  But the difference is that Isaiah’s only four, and he doesn’t really have to read right now.  We can let the whole thing go for a year or more, and be none the worse for it.  But the reality is that we might not have the money to pay people to fix our stuff soon - and I’m well past the age that I should be doing the work.

Periodically I hear others (and I do this myself) say “I’m not good at X” For X you can insert just about anything - growing food, sewing, cooking, repairing things.  Now sometimes this goes to a real physical disability that has to be overcome - or can’t.  There are things those of us with physical or intellectual limitations may never be able to do - just like there are people who will never master their times tables or learn to read.  But barring such disabilities, there are some things in life that the general consensus requires that we have a certain basic, minimal skill set in.  For example, children may come to reading or arithmetic with great difficulty or great ease, but the assumption is that they need to learn to read and do their times tables.  They may never do them naturally, but they have to be able to.  And the truth is that for most people who received an adequate education, they can read and figure, if laboriously.  

 There are large chunks of basic subsistence skills that we really need to treat as part of the same basic categories as reading and math - things that every adult person should have a certain level of minimal competence in, barring a true physical or mental barrier to them.  I’m not sure I’d use Robert Heinlein’s list quoted above, but you can come up with a decent one that isn’t too far off  and that prepares us for this new world where we can’t buy our way out of so many problems- all of us need to know how to cook a decent meal, handle an injury or illness crisis, tend a sick kid, fix a broken step, darn a sock, dehydrate a tomato, tell a story, grow a potato,  build a sun oven, bake a loaf of bread, put up fence, season cast iron, mend a rip, care for a dying person, sing a baby to sleep, clean a toilet, knit or crochet a sock, fix a roof, use a weapon, plant a tree,  immobilize a limb, make someone understand a counter-intuitive idea, save seed,  sharpen a knife, chop garlic, make beer, have courage, fix a bicycle tire, make soup, give a pep talk…

The truth is that for most people, with most things (and again, I know there are exceptions), “I’m not good at it” is a cop out.  The reality is that most of us aren’t going to be very good at everything - some things will always be struggle, and as long as we’ve got the time and money and energy to find alternative ways of dealing with it, it is perfectly fine to say that I want to reserve my struggling for things I care more about.  What’s not ok is telling our kids, or ourselves the lie that it is ok to use our fear of failure or our hatred of being bad at things as an excuse for picking up skills.

The other thing it isn’t ok to use as an excuse for this is division of labor, particularly by gender or class roles.  That’s not to say that there aren’t jobs that it won’t make sense to contract out to a partner or someone who needs the money - there’s nothing wrong with you saying “I have more money than time right now, I’m going to get someone to build in those pantry shelves.”  Nor is it bad to acknowledge that your 6′3, 200lb husband is probably better at hauling hay bales than a 5′1, 90lb spouse. 

But the reality is that spouses sometimes go away, and things happen when they aren’t around - and occasionally, they die or marriages break up.  Sometimes spouses are away just as the cattle need feeding, and the money dries up even though you really need those shelves.  The wrong attitude here is the “my wife does the cooking, so I don’t have to” or “I’m very important and I make lots of money, so I don’t have to know how to fix my bike.”  Instead, the idea is that all of us be able to handle the basics - we can hire our friend who is a talented seamstress to if there’s cash, but if rips need mending and there’s no money, we need to be able to make the clothes wearable.  All the men and boys need to know how to do “women’s work” at least to a competent minimum, and vice versa (and yes, I’m using the term ironically).  Everyone gets up on the roof, at least enough to be able to know how to keep the rain off - and then, if you are fortunate enough to have someone else in your life willing to go up in the rain and fix it, well, you can be grateful, but not dependent.

I’m going to bet that everyone one of us has a little guilty spot right now, a thing they know they should learn, a skill they’ve been avoiding picking up, something that they’ve already tried and put down in frustration because they sucked at it.  So I’m about to give you folks a bit of a challenge - I invite you to take a look at the holes in your own competence, pick one that needs filling, and get to work on filling it. 

My project is to get handy - I want to be able to build my own bookcases and fix my own plumbing.  I’ll be posting regularly about how it is all going, and I’m hoping for lots of support as I make plenty of stupid, incompetent mistakes. In turn, I really invite you to tell us about all your failures and inadequacies as you gain a skill you really need.  We promise, we aren’t going to let you fail.  And maybe you’ll inspire the rest of us to keep going, or to try yet another skill after we master the basics of this one. 

So who is in?


Stuck: Why Most of Us Really Will be Adapting-In-Place

Sharon October 7th, 2008

Want to know how the current economic crisis is playing out in most people’s lives right now?  Well, for some, there is the disastrous loss of a home or a job, the need to move, increasing stress and the sense of crisis.  But for most of us, so far, instead of increased mobility, we have less.

Had you planned on moving?  But the house won’t sell, so you are stuck.  Were you saving for a downpayment?  But wait, you don’t want to buy until the market bottoms out, right?  Were you nearing retirement?  But if your pension or 401K has tanked, you can’t retire.  Do you hate your job?  But you need your seniority if you want to outlast any coming layoffs, and you can’t risk your benefits.  Were you thinking of going to college or back to school, or have you just graduated?  Well, student loans are increasingly tough to get, and the job market is looking bad - back to Mom’s we go.

The first effects of our tanking economy have been enormous pressures on most families and households to stay where they are - even if they might be better off somewhere else.  And the dual problem of increased and decreased mobility seems truly unlikely to do anything but accellerate - for the rising numbers of unemployed and those who lose their houses, the need will be to move somewhere, anywhere they can find work and housing.  For those lucky enough to keep their jobs and homes, the ability to move or change jobs is rapidly disappearing.

Now to some degree, and for some people, this may not be so very bad.  Those who would have liked to move for career reasons or for a bigger house, parents who might have downsized to a condo but now have room for the kids and grandkids to move back in may find themselves not so very discommoded.  For others, who dreamed of buying a farm, wish to be closer to aging parents or beloved family, those who invested in an area that may not be sustainable - this is a big and serious problem.  Being trapped is better than being unemployed, but it isn’t good.

So the question becomes - how do we get out of the trap?  Is there any recourse for us now that credit and the old ways of getting things have dried up? 

And the answer is yes, but it will require a lot of something that most Americans don’t have in their friends, neighbors and family - trust and cooperative energy. What do I mean by that?  Well, the truth is that you probably only need one 2000 square foot house between two 4 person households - so if you can trust each other enough, and find a way, you and your sister (or your best friend or your neighbor) who both have houses teetering on the edge of foreclosure can save one of those houses and move into it.  But that requires that one of you be willing to give up their home, that everyone sacrifice privacy, that the fears that the arrangement work out badly don’t overwhelm the value of it.

What if you wanted to quit your job and start a business, building the local economy, but you can’t now?  Or if you need to retrain?  Well, one of the best possible tools for you might be the kind of collective funding that immigrant communities have brought to the US.  Everyone puts a certain amount of money into a kitty.  The money is loaned out to one of the members of the group, who is then required to repay it within a reasonable time.  Then, the money goes out to the next member.  This is scary stuff - someone might lose money, someone might fail and be unable to repay, everyone might get hurt a little by taking a risk.  On the other hand, everyone might gain, as well.

What if you were hoping to retire, and now you can’t, and it is increasingly hard for you to work?  Well, do you have any friends in the same situation?  Could you share housing, and make what’s left of your retirement money go further?  Could you let your grandkids or a your friend’s daughter move in with you, in exchange for her keeping up minimal costs.  Perhaps you could take your new free time, and barter some childcare and your house for someone to take over earning most of the payments.  Maybe you can change your dream of what a retirement is - perhaps to owning outright a little house with another couple.  But this is much harder and scarier than relying primarily on your money to take care of you and help you out of trouble.  It is hard for the person who is aging, and it is hard for the younger family they will rely on. 

In a crashing economy, family, community, friendship and social ties are what we have to compensate for a lack of money.  We turn to barter, to love, to friendship, to trust, to shared risk, to shared gain to make up what is missing in our lives.  We’re stuck - but we get unstuck by risking ourselves with other people.  And sometimes, it won’t work.  Sometimes we’ll lose, maybe even more than we can afford.  Odds are, however, mostly we won’t.  And if we do, the only thing we can do is remind ourselves that losing more than you can afford isn’t limited to direct human relations - it happens all the time in the industrial economy.


Love, Schmove - Just Tell Me How to Build Community With the Guy Who Mows His Lawn in his Speedo!

Sharon September 4th, 2008

In my last post (just scroll down) I waxed philosophical on what it might mean to love your neighbors, and how we might build a love economy in our communities.  I do ramble on moral principles sometimes, but be assured,  I’m done for the moment now ;-) .  Let’s get down to brass tacks.  How do you deal with the neighbors who not only do you not love yet, you can barely tolerate - and who haven’t expressed any particular desire to love you, unless you count letting their dog poop in your yard?  How about the ones you already can’t stand - or they can’t stand you?

This is one of those things I feel reasonably proud of our ability to do - build community, not with members of an ecovillage carefully selected for like-mindedness (nothing wrong with it if you happen to live in one, but most of us won’t), but with real neighbors.  I have a good relationship with my neighbors - we’ve shared a lot of things over the years, including childcare, a car, our washing machines, stress, gossip, meals, and time.  I trust that I could get their help in a crisis - and I hope they trust that they would have mine - in part because we have helped each other through various things. 

Does this paradise of neighborliness exist in a place where everyone shares our values and opinions?  Not hardly.  We cover the range of political opinions from far-left to far right to “don’t give a damn.”  We cover a reasonable religious range - Protestants of several stripes - from AME to Lutheran to Evangelical - to Catholics, Pagans, Athiests, and us - the neighborhood Jews.  As for visions of the future - well, at least one neighbor reads my blog (Hi Rick!) but most of them either don’t know what peak oil is, or politely think I’m a loon.  We disagree strongly on everything from what should be taught in the public schools, what constitutes a good diet to whether Syracuse making the finals is a cause for celebration. 

But what we do have is a good deal of common ground on other issues.  It is just a matter of finding it - and generally speaking, we find it at fairly basic levels.  We all eat, and higher food prices are pinching everyone’s purse.  Those of us who have kids all care about those kids’ future.  We all want to keep safe, and ensure a decent future for ourselves.  We all like being happy and all of us want a good life.  Now it is absolutely true that some people will have differences about how to get at these things.  But it is also true that usually, with most people, you can find some common ground, if you dig around.  Yes, they may be mostly concerned with the rising price of sugar cereals, and you with your morning bowl of quinoa porridge.  But now you have a talking point - your shared concern about food prices.  And maybe, just maybe, you have the beginnings of something else - the chance to say “I’ll pick up your sugar frosted loopies if they are below X price at my supermarket - will you check the quinoa bin to see if it costs less than this?”  And there probably is something you both eat.  Or maybe you worry a little bit about gas, and you could share a ride in to the supermarket.

I’ve only very rarely met someone with whom I could find no common ground at all - and I’m not perfect. I get pissy and grumpy, and I don’t always like people.  But there’s always something you can share - always.

What about the awful people with whom you are already at war?  Sometimes these things can be fixed - sometimes you can learn, if not to get along, to tolerate each other, and work together when absolutely necessary. But if too many bridges have been burned, the next step is simply to work on your community with someone else - move on to the next house on the road.  Nothing I say about community will ever mean that everyone is always working shoulder to shoulder - you can build community but some people will want nothing to do with it, or only on their own terms.  Sometimes there will be factions, or anger, or feuds.  The best strategy is to let it go, and move on - concentrate on the people who are willing to put differences aside, or those who don’t require so much effort.  We’ve all got to decide how to use our energies - chasing the person who hates you may not be the best choice. 

I am going to say something that may be a little controversial.  Back when I was dating, I met some guys who would tell me about their romantic history, and it turns out that all their ex-girlfriends were either crazy or evil in some way, every relationship had ended badly.  And I developed a rule that I pretty much think applies to this as well - everyone is entitled to one or two or maybe even three (depending on the length of the history) experiences with wackos and bad people. It happens to the best of us.  But if all their ex-girlfriends are psychos, if not one person they ever dated was someone they could like enough afterwards to have a civil relationship, much less a friendship, the general rule of thumb was that it wasn’t just the other people - it was them.

I realize that many people may not like to hear this, but I find this rule of thumb useful when people tell me about how they hate all their neighbors, they can’t get along with anyone, everyone always betrays them or is trying to hurt them.  That stuff happens. It is real.  There are bad people out there, as well as fools, creeps, etc…  But if it happens all the time, either the problem is partly in your ability to have relationships, or your inability to prevent being a victim, and some work needs to be done on that end as well.  That may mean learning to let things go, and to believe that other people aren’t trying to be unkind or hurtful, but are simply doing their best.  It may mean learning to stand up for yourself and not be a victim. It may mean learning to get along better with people - to not say what you think or demand to do things your way all the time.  Sometimes community building is about fixing yourself.  I know it sometimes has been for me.

How do you get started, if you don’t know your neighbors?  Well, one way is to enter into existing community structures.  Your community has them - Churches, synagogues, mosques, the PTA, the library board, the garden club, the local political parties, action groups for various issues, etc….

 I think there’s a tendency to underestimate existing community structures, and to decide “oh, those couldn’t possibly be made to serve our goals” - but that is what happened, for example, during World War II - existing neighborhood associations, church groups and other community structures were brought together to work on one project.  Often, there’s more interest than most of us would expect - for example, for years, I mostly kept my work and my synagogue life seperate, because I wasn’t sure how well they would overlap, and because I didn’t want to seem too pushy.  Finally, I pushed a little harder to get some green stuff going, and what I’ve found is that there’s more enthusiasm than I would ever have expected, and I’m the one telling people to slow down ;-) .  The moral of the story is that sometimes it is easier than you think it is to harness the power of institutions. 

Or perhaps you do need to start something - there is no group that you can join.  How do you get your neighbors together?  Well, how about some food?  Some music?  Beer?  Nothing builds community like inviting the neighbors over for some food.  Start talking - and listening - to what people are thinking about. 

 Once you know what they care about, that’s the key to finding a big tent way to get to working together - instead of bulk purchasing quinoa, you need to think about finding something everyone uses - or someone else who eats sugar frosted loopies to share a bulk order with. 

Remember, you don’t have to tell everyone everything.  You can bring up peak oil and climate change, and when the neighbors say “well, Newt Gingerich says we have all the oil we’d ever want and that we’re approaching an ice age” - let it slide.  It doesn’t really matter whether your neighbor is buying in bulk to save the planet or to save up for their Disney vacation - you are working together.

Sharing stuff is new to a lot of people - new things are hard.  So make sure you keep trying.  It might take five times to get an elderly neighbor to agree to let you pick up a carton of milk for her on your way home - the first few times, she might think it was polite to say no, or that you were judging her, or assuming something about her.  It might take five times - or even ten - before she realizes you are serious. 

Make it fun.  If you can get your neighbors to sit down and talk about preparing, or getting ready, make cookies or bring beer.  If you are going to share a bulk order, make the night you sort it all out a party.  If you want to start getting together to get work done in your neighborhood, make a big meal, and provide games for the kids.  Give people the benefits of community right away - don’t make them wait for it.

Keep pushing the envelope, even if it is hard.  First you borrow a cup of sugar, and then you lend one.  Next time, when your neighbor mentions her vacuum died, you can say “why don’t you share mine - I only use it on Tuesdays.”

Expect rejection - and don’t take it personally. You might have to try a dozen times to come up with something that meets their needs, or they might not care as much as you do about something.  This is disappointing - but it doesn’t mean that they are bad people or they don’t like you just because sometimes you have to work to find the right buy in.  Try not to be too judgemental - the guy in the speedo probably thinks he’s improving the neighborhood aesthetics, or maybe he’s just hot.  Consider it part of your vibrant local culture, instead of an ugly horror ;-) .

Most of all, keep at it.   Eventually, you won’t have to do so much work - community takes on a life of its own.


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