Archive for the ‘Ruminations and ramblings’ Category

It Doesn’t Work That Way

Friday, April 29th, 2011

I saw a bumper sticker on a minivan while I was driving around town yesterday. It read Parenting Advice Is Not Welcome Unless You Also Have A Child With Autism. I smiled a little, sideways, in understanding, and winced in sympathy.

Even before I knew that our son had autism, I had figured out that most of my instincts, and all my parenting books, were wrong for this child. My instinct is to cuddle a crying child, but it only made matters worse. I have sung babies to sleep since I started babysitting in my teens, but if I sang to my son, or even in his presence, he screamed. A time-out didn’t register, because he was in his own little world to begin with; what stressed him was being forced to interact, or having his routine disrupted. Explaining things to him was useless, (though I kept doing it) because he did not understand.

And for all that, he was a little boy. I took him to the library sometimes, because he’d taught himself to read and loved to look at the books. But he also loved to run, and so I found myself, one day, trying to get him to stop playing keep-away around a middle-aged gentleman who was most unamused by the antics. “What kind of mother are you, that you can’t control your child” he asked scathingly. “If he were mine I’d give him a good spanking. That would get his attention.” Yes, it would have, but it would have overwhelmed him so much he wouldn’t have understood the reason for it. I sat down on the floor, pulled my son into my lap on his next pass, and held him there by main force until he calmed down. I hoped my critic would go away once he was no longer an obstacle for a mischievous child, but no such luck. Finally, when my son was no longer fighting me, I looked up. “He’s autistic” I said, “and he’s four. What’s your excuse?” He stared at me for a second, muttered “Sorry; I didn’t know”, and finally, finally walked away. We left too; it was a couple of years before I tried to take my kid to the library again.

That was exactly it. He didn’t know. Most people don’t. Unless you live with it, it’s invisible; you can’t see that the beautiful child standing with his mother is neurologically different. Physical disabilities make people uncomfortable, but you can see them. Autism isn’t obvious unless you know exactly what you’re looking at. It looks like a tantrum at an age when tantrums should have been outgrown. It looks like defiance, or stubbornness, or repetitive, disruptive behavior. And yes, sometimes it looks like what would be lax parenting in a neurotypical kid. Even if my son’s behavior didn’t pull them in, absolute strangers felt called upon to tell me what I was doing wrong when he behaved in unexpected ways. Sometimes it was very specific advice, sometimes simply “I’d never let my child get away with that.” I resented the need to explain him all the time. I resented being judged and found wanting by the clueless.

He’s grown up quite a lot, and now the comments I get are complimentary. People tell me what lovely manners he has, and how helpful he is, and how confident. There’s still a lot they don’t see, but what they do see no longer arouses negative comment. I no longer get well-meant but irritating advice from random strangers in the mall. But I sure do understand that bumper sticker.

Parenting Advice Is Not Welcome Unless You Also Have A Child With Autism. Yes. That. Exactly that.

Expiration Date: None

Saturday, April 23rd, 2011

My son’s bar mitzvah is in less than a month now. All sorts of gifts are appearing magically. His godmother is making his guestbook. His school librarian is making his cake. She who keeps me from losing my mind is organizing the entire affair, because she rocks a party. And an old friend from high school and college is weaving his tallis.

That’s the one that most stuns me. We were very close then, but we lost track of each other more than 25 years ago. We both moved, I couldn’t remember her married name, and didn’t know who to ask. I thought her mother was probably still in Indianapolis, but I didn’t know her first name, knew my friend’s father had died and that her mom had sold the house and moved, and ran aground on the five pages of people with the same last name in the phone book. When I’d last spoken to her, she didn’t have any children. By the time a mutual friend mentioned her in passing and invited me to join them for lunch,, her daughter was grown and living on her own. She’s never met my son. But when she told me over that lunch that what she did now was weave custom prayer shawls and I mentioned that my son was becoming a bar mitzvah, she offered it as a gift. And having offered, she was determined to do it.

It made me uncomfortable. There was so much time between, though we picked up as if there had been a few months instead of all those years. I know both how much work goes into weaving and what such a thing costs. The other things are just as much gifts of love and creativity and the time of incredibly busy people. They are certainly just as treasured, but they were not a surprise. Hers was, and is.

I was talking it over with the woman who’s doing the party planning, saying I had no idea what I could have done so many years ago that would lead to such an offer. She looked at me as if I didn’t have much sense (and sometimes I don’t, I agree) and opined that it didn’t matter; whatever it was, the weaver remembers it, and it was important enough to her that it had no expiration date. It still matters to her. This is one of those times when all I can do is accept the gift, as I have accepted all the other such gifts, with immeasurable gratitude.

I am under no misapprehension. As much as they are gifts to our son, all of these are gifts to me as well. Truly, my friends are a blessing.

The Sound of Silence

Saturday, March 12th, 2011

The first time I woke up this morning, everything was exactly as usual. I took care of morning necessities, fed the cat, had a glass of soy milk, and went back to sleep. When our son woke up at his usual unsanctified hour, my wonderful husband got up with him. I registered that it was light out, a thing we will lose tonight with the change to daylight savings time (in March? Really?), and went back to sleep yet again.

But what woke me the next time (for the day) was not sound, but silence. The power had gone out, something I figured out when I looked at the clock to find a blank black bar looking back. The guys had gone up to the attic, so I couldn’t hear them, and all the rest of the usual background was gone. It was amazing how quiet the house was, without the sounds of modern life. No hum of the kid’s computer, or the refrigerator or freezer. No intermittent low chug from the well pump, nor sigh of air blown by the furnace fan. No vibration and swoosh as the sump pump ejected water from the crawl space. All I could hear was the purring of the cat by my legs, and the roar and rustle of the wind outside.

Silence isn’t really natural at any time. Nature certainly isn’t quiet under normal circumstances, so much so that when the meadow or woods fall still it’s as good as an alarm bell. Something the birds and squirrels and other little things are afraid of is nearby, and they are motionless and soundless so that they don’t attract its attention. It might be a cat or the shadow of a flying hunter or the pressure change that heralds a sudden summer storm, but whatever it is they freeze and wait until it either goes away or proves itself not a threat. Even less is a modern home silent. Every machine has its own voice, so that all that really impinges on awareness are things like the kid’s videos (If the Annoying Orange had a neck, I’d strangle it) or the beep and background “music” of his computer games.

But this morning, for about three hours, all that was gone. I’m still aware of its presence, having noticed and enjoyed its absence. By evening it will all be relegated to the background again, the unconscious underlying drone of the 21st century in America. But for now, my ears are awake, and I’m listening to my grey cat’s snoring by my shoulder and the wind carrying in the spring.

Not What They Intended

Wednesday, August 25th, 2010

I was walking through a parking lot in a nearby small town when a woman coming out the door of the Dollar Store met my eye, reached in her pocket, and handed me a flyer, saying “you should read this.” ‘Scuse me? You don’t know from Mother Eve – what is this thing and why are you handing it to me? When I glanced down, it was a classic, standard model Mark I tract. My spirituality isn’t likely to pull up roots at this point in my life, but I confess that I was curious. I glanced through it.

It starts with a middle aged man being loaded into an ambulance and asking for a priest. Next we see him with the classic sheet over his face, as a weeping young woman asks the priest if he managed to make his confession. The priest assures her that he confessed, was forgiven and received Last Rites, and that his soul was safely on his way to heaven. I noticed in passing that the words put into the priest’s mouth were “I forgave him” not “G-d forgave him”, but what do I know? I’m no Catholic. I’m also fairly certain that the clergyman isn’t the one personally doing the forgiving, which puts me ahead of the folks who wrote this little gem. But whatever. I forged on.

Next they show Our Hero at the proverbial Gates, with an indistinct but imposing figure pointing down. The next frame, clearly meant to be at the same time, is of the priest describing this man’s life, and assuring his flock that Our Hero was already enjoying Heaven’s Bliss, for he had been not only a been an observant Catholic, but a loyal son of Mother Church, known for charity and good works, building homes for the poor with his own funds, giving clothing to any poor child he saw, never throwing away leftovers from the restaurant he owned because “everyone knew” that if they came at the end of the day, he’d give anyone a package of leftovers sufficient for a family with no questions asked. They laid it on with a trowel; this guy was a Good Person.

“But I did everything right! Why am I condemned to the Lake of Fire?” cries Our Hero. And so he is brought for an audience with Jesus – another indistinct but imposing figure. (Why not G-d, I wondered? But again, what do I know? Not Christian in any form, much less this one, and never will be.) And in great detail, this figure tells the man that all that matters is that he never “accepted [Jesus] as his personal Lord and Savior in life, that everything he was taught by the Church was a lie, and that not only he but everyone who became Catholic because of his example would burn eternally, THE END.

I threw it away, of course, but I found myself thinking about the people who hand those things out and believe their message. How sad, to believe that your $DEITY is so cruel and petty. Good intentions count for nothing. Concern for those less fortunate counts for nothing. Charity, honorable behavior, ethics, morals, honest faith – all of those things count for nothing. The road to their divinity is a one-way street, accessible only through their particular gate-keeper. They have made G-d as finite and narrow-minded as they themselves are – making G-d in their image, rather than making themselves in G-d’s image.

I’ve seen these things before, and they’ve always left me disgusted. So did this one; no one has a right to determine the validity of another’s belief. But it left me with another response as well – pure pity. I’m pretty sure that wasn’t the reaction they were hoping for.

Past Due

Monday, May 31st, 2010

I’m cleaning. No idea where to start was no longer an excuse, so I started where I’m generally most comfortable, in the kitchen. Nor is this a “lick and a promise” cleaning; things are getting picked up, put away and thrown out. Small openings are getting cleaned with cotton swabs. The latest Goodwill box is filling up apace. Once I get through the kitchen, I figure I’ll tackle the bathroom. After that I’ll figure out where to go next.

It’s a slow process, partly because I haven’t done it in far too long and partly because I have about twice as much stuff as I do space for it. But this time I want to see it through. At one point I thought we’d live here a couple of years, and then move someplace better. But life and the economy intervened, it didn’t happen, and I’m tired of the current state of my house.

An “Ordinary” Heroine

Tuesday, January 12th, 2010

Miep Gies, the woman who found Anne Frank’s diary and saved it, has died at age 100. She was in her early thirties when the Nazis first came to Holland. Her employer, Otto Frank, had moved his family to Amsterdam to escape the increasing virulence of the Nazi regime in their native Germany. When the Nazis came to the place the Franks had hoped would be a haven, there was no way to run again. So the four of them, plus another small family and a single man – eight people in all – hid for a bit over two years, helped by Miep and her husband Jan and a few others. Even after their arrest, she risked going to the German police and trying to bribe them into letting the Franks go. Her courage was almost incomprehensible from my living room in the safety of 21st century Indiana.

I’ve been trying for the past several hours to think of something appropriate to say about her, something of what she taught simply by the way she lived her life, but there is too much there. That there is light, even in the deepest darkness. The greatness of spirit that an ordinary person is capable of, when the need arises. That heroism isn’t only in the grand gestures, but in the quiet, day in and day out actions of anyone who tries to do what is right even when it could cost them everything. She insisted that she was not a heroine, because, she said, she did not want children to think that it required someone special to do what was right. “Who is a hero?” she asked. “I was not. I was just an ordinary housewife and secretary.”

She was indeed a housewife and secretary, and a mother. But it was in her very “ordinariness”, in being the sort of person everyone knows, that she was most extraordinary.

In what you did, in what you said, in a girl’s writings carefully preserved, in the stories you told and by the example you set, you changed the world, Miep Gies. And in so doing, you blessed us all.

How’d That Happen?

Saturday, September 26th, 2009

Via the friend-of-a-friend sort of thing, I started reading the blog of a young woman (college age) in Norway.  She mostly blogs in English.  I’ve never asked her why, but if I didn’t know she was from Trondheim, I’d never have guessed.  Her use of English is quirky, but not so much more so than some of my other friends.

She started having some problems and talking about them, and I commented, sometimes telling her about applicable things I’d seen, sometimes asking questions that (she said) made her think rather than simply react, sometimes simply being sympathetic and telling her someone wished her well.  They’re all things I do in the way of listening, just this time it was in writing instead of in person.

Somewhere in the process, I seem to have acquired another fledgling.  She e-mails me now to talk things over that she doesn’t want to post publicly in her blog.  It seems what I have to say matters to her.  We’ve never met in person, but that doesn’t matter to her, or really much to me.  In everything but making her tea and listening in my own living room, it’s exactly like the other fledglings I’ve had.  On the one hand, it feels perfectly normal.  But when I stop to think about it, I find it utterly mind-boggling.

“Heaven for the Climate, Hell for the Company” – Mark Twain

Wednesday, February 25th, 2009

I just had two Purveyors of Religion (aka missionaries) appear at my door.  I was polite; I try always to be polite, even when I consider what they’re doing to be the height (shouldn’t that be depth?) of rudeness.  I told them it was a Jewish household, and when they didn’t take that hint, added one of my favorite Mark Twain quotes on religion.  That confused them, and they left.

People who knock on my door trying to bring me the One True Faith(tm) have always bothered me.  What, all others are counterfeit, like the Canterville Ghost? (If you haven’t read the short story, do so.  It’s fabulous.)  It’s the implicit arrogance of it that I find most disturbing.  I mean really.  To claim that they have the One True Way – and not just “Christianity” but their particular sect and flavor of Christianity requires that they claim that they, and only they, know the mind of the $DEITY.  I’ve always thought the whole point of any deity was to be beyond human, and beyond our comprehension.  We’re mortal, limited in our perceptions and ability to conceptualize; the Creator of the Universe(s) by definition is not.  So how can they, or anyone, say that not only are there a finite number of ways to approach that Infinite, there is only one, and they alone know it?

What unmitigated gall, and they themselves don’t perceive it.  And they think they’re doing me a favor?

A Virus of Fear

Wednesday, February 11th, 2009

I have just read an article that makes me absolutely furious.

In summary, it seems the doctor whose study ignited the scare that the MMR (measles-mumps-rubella) vaccine might have a correlation with autism falsified his data. Someone went back and looked at the patient records his findings were supposedly based on, and they didn’t match up at all.

For years I’ve sidestepped this controversy, telling people who tried to drag me and my advocacy abilities into the dispute about whether or not to vaccinate, and whether the vaccines might be causing autism, that I would leave that to others; my concern was to figure out what would help our children now, and how to make sure that they got it regardless of their parents’ income or educational level. It didn’t make sense to me, and I didn’t want to be dragged into the arguments. But a lot of parents have swallowed this hook, line and sinker. It feeds into fears of a technology most do not fully understand, and of not doing what is best for our children. And once internalized, that fear doesn’t go away easily. It’s like a virus itself, one for which there is no inoculation. This doctor has played on those fears. The article that started all of this came out 10 years ago, but it will take far longer to undo the damage it’s done. I won’t be surprised if it takes a full generation, and I’m sure it will never disappear entirely. Meanwhile children have been and will continue be put at needless risk of entirely preventable diseases by parents worried that the consequences of prevention will be worse than the diseases themselves.

Articles expire, so the text follows:

The doctor who sparked the scare over the safety of the MMR vaccine for children changed and misreported results in his research, creating the appearance of a possible link with autism, a Sunday Times investigation has found. (emphasis mine)

Confidential medical documents and interviews with witnesses have established that Andrew Wakefield manipulated patients’ data, which triggered fears that the MMR triple vaccine to protect against measles, mumps and rubella was linked to the condition.

The research was published in February 1998 in an article in The Lancet medical journal. It claimed that the families of eight out of 12 children attending a routine clinic at the hospital had blamed MMR for their autism, and said that problems came on within days of the jab. The team also claimed to have discovered a new inflammatory bowel disease underlying the children’s conditions.

However, our investigation, confirmed by evidence presented to the General Medical Council (GMC), reveals that: In most of the 12 cases, the children’s ailments as described in The Lancet were different from their hospital and GP records. Although the research paper claimed that problems came on within days of the jab, in only one case did medical records suggest this was true, and in many of the cases medical concerns had been raised before the children were vaccinated. Hospital pathologists, looking for inflammatory bowel disease, reported in the majority of cases that the gut was normal. This was then reviewed and the Lancet paper showed them as abnormal. Despite involving just a dozen children, the 1998 paper’s impact was extraordinary. After its publication, rates of inoculation fell from 92% to below 80%. Populations acquire “herd immunity” from measles when more than 95% of people have been vaccinated.

Last week official figures showed that 1,348 confirmed cases of measles in England and Wales were reported last year, compared with 56 in 1998. Two children have died of the disease.

With two professors, John Walker-Smith and Simon Murch, Wakefield is defending himself against allegations of serious professional misconduct brought by the GMC. The charges relate to ethical aspects of the project, not its findings. All three men deny any misconduct.

Through his lawyers, Wakefield this weekend denied the issues raised by our investigation, but declined to comment further.
(by Brian Deer, Times Online UK edition, Feb 8, 2009)

As if we hadn’t had enough to worry about.

Another Way of Seeing

Saturday, February 7th, 2009

It was above 50o F. today, so I took advantage of the relative warmth and sunshine to take a walk. I hoped it would improve the mood, and indeed it did.

But I was not walking quickly, and noticed details I don’t always perceive. A small marsh-willow (non-weeping) had a nest in the fork where three tiny branches met. It was a neat, perfectly woven cup, perhaps two and a half inches in diameter, and I found myself wondering how small a bird must be to occupy such a nest along with her hatchlings. It’s untenanted now, of course, but so well built and anchored that all the winds and storms this winter has presented so far have neither torn nor dislodged it.

A few feet further on I found a young locust. It too had a nest, though not as whole as the first. What intrigued me was that the second nest was braced by a small branch and a thorn long enough that had it not been sharp, it would have qualified as a twig in its own right. The tree itself was part of the bird’s defense, in a way more direct than the usual cloaking leaves. When I was a little girl, I read about thorns being used as pins, but I couldn’t imagine how that worked. The only thorns I’d ever seen were rose or berry thorns, and while those certainly could tear unwary arms, they were too short to fasten anything. But locust thorns make sense. They’re incredibly sharp, easily thin enough to pass through hand-woven fabric, and longer than my quilting pins. Looking at them, I thought that if one drilled a small hole in the flared end that attaches it to the tree, it could serve as quite a serviceable needle as well. I think I’d be more surprised to learn they hadn’t been used so than that they had.

Around the corner, there was an oak in my landlady’s yard. It would have been easy to take the brown bits at the tips of the twigs for a few last leaves the wind had left behind, had they not taken wing in a fluttering whirl. It may be winter, but the tree is still good camouflage for the small brown chirpy birds that brave the cold and snow and wind. Instead of hiding in the leaves, they look very like brown leaves themselves.

And home again, to my boychick on the computer. “Mom, look at this!” It was a picture of a large tornado he’d found on Wikipedia. The things I found outside were smaller and less dramatic. They’ve been there all along. I just wasn’t looking.