Archive for April, 2009

Little Signs of Spring #17

April 29, 2009

How I know that Spring is really here at the Doublewide Ranch…

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The Chipping Sparrow sings in the morning.

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The honeybees sip hummingbird nectar.

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Apple blossoms…umm…blossom.

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Tulips glisten after a sweet spring rain.

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And swallowtails swarm on lilacs.

(Note to my daughter Ariel:  Happy Birthday,  babygirl.  Wish you were here.)

Things Are Seldom What They Seem

April 21, 2009

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My favorite thing about the Doublewide Ranch is our front porch. We have a swing, two rockers, and a 15-mile view where we can see the lovely skyline of Asheville, eleven miles away. At night, the lights of the city twinkle and shimmer, and Asheville looks like the Emerald City in the Wizard of Oz.

But on this side of Asheville, there are lights that shine even brighter than the city lights, and for a long time, we speculated about what they might be. They shine luminous and golden and lovely—strung out like diamonds on a necklace. From a distance, it looks like a magical, fairytale sort of place and we spent a fair amount of time driving around in that area until we finally found the source of the radiant glow. What was it? Why, it was…a prison. Which, of course, explains the very bright, shining, golden lights.

The point I want to make here is that, from a distance, things aren’t always what they appear to be. And until we look closer and know more about a situation, we can often draw conclusions that are far from reality. And I make this point because, in recognizing National Autism Awareness Month,  I want to talk, not so much about autism, but about the great harm that words of judgment (so often based on scant knowledge) can do.

And as the mother of an autistic child, I have certainly known judgment. It’s bad enough when it comes from complete strangers—like the people who look askance when your child behaves in an inappropriate way in public. Truth is, I soon learned to tune those people out and shrug off their heedless words. But the judgment that hurts the most and cuts the deepest is judgment from the people you love—in my case, my extended family.

When Benjamin was very young (from about age two to four), he would scream in terror when I tried to cut his hair. It wasn’t a tantrum scream (believe me, I know the difference)—he was genuinely distressed. Having his hair cut was obviously, for whatever reason, very traumatic for him. (I have learned since that that’s fairly common with autistic children). So I made the decision to leave his hair long until we could figure out why it troubled him and how we could make it easier. (I did cut his bangs while he was sleeping).

This resulted in no end of snide comments and even ridicule from most of our extended family. Of course, I explained the reason to them, but it seemed to make no difference. Comments ranged from He looks like a girl to He looks ridiculous to You shouldn’t give in to his tantrums to Don’t you realize this is going to cause real gender identification problems for him?? (I reckon that means that they also didn’t like that I let him play with dolls.)

Around about the same time, Benjamin went through a phase where he liked to recite the complete dialogue (including narration) from videos he had seen. Amazingly, he could do this after seeing it only two or three times, and he did it verbatim, complete with inflections and accents. A real favorite was The Wrong Trousers (with Wallace and his faithful dog Gromit. Benjamin really fancied a British accent.) It was very entertaining, really. But, of course, this just gave more reason for my extended family to issue more unsolicited and ill-informed advice. “You must be letting him watch videos too much. That’s not good for children.” Well, no…actually I limited my children’s TV and video watching when they were young. I explained to my family that Benjamin could do this after seeing a video only two or three times. I could see from their self-righteous expressions that they didn’t believe me.

While most parents probably second-guess themselves and wonder if they’re doing the right thing for their children, I think parents of autistic children live with that feeling more than most. Often, it felt like I was traveling in a foreign country without a map, and sometimes all I could do was to put one foot in front of another, hold fast to hope, and pray I was traveling in the right direction. And it was not helpful to have people who have never been to that foreign country tell you that you’re going wrong.

I could go on and on with examples of how destructive to our spirit all the ill-informed opinions and unkind judgments of others were, but there’s really no point in that. But what I want to say is: If you know someone who is going through hardship—of any kind—first of all, listen. Listen to their fear, listen to their sadness, listen to what they’re NOT saying.

Second…educate yourself. Ask questions, read, seek answers—it shows you care. I really don’t think a single person in our extended families ever bothered to learn much of anything about autism. Yet, remarkably, they fancied themselves experts on how we should raise Benjamin. Imagine that.

Third, encourage. One of our dearest friends (who passed away a few years back) was our friend Ernie who, although blind, had the clearest vision of anyone I ever met. We were talking on the phone one day and she said, out of the blue, “You are the BEST mother!” And I cried. Just five little simple words, but they meant the world to me. We miss Ernie.

Fourth, unless they ask for it, resist the temptation to offer advice based only on your own experience. Remember: your reality is not their reality. As they say, don’t judge unless you’ve walked a mile in their shoes.

The irony here, of course, is that I’m likely preaching to the choir. Because if you’ve read this far, it means you care enough about me and my family to read through this little diatribe and that you’re probably not the sort to make rash judgments. Often, it seems that the very people who most need to hear something never do. As Paul Simon said in The Boxer, “…still a man hears what he wants to hear and disregards the rest.” (And, in case you’re wondering, no one in my extended family reads my blog. Even if they knew about it, I doubt they’d be interested enough to read it.) But if my words make one person think, then I think…perhaps…they are worthwhile. If nothing else, it’s probably a good thing to get this off my chest—it’s been a source of great pain for us.

So thank you for listening…and for your comments. They make me feel as though perhaps I’m not just crying in the wilderness—that my words are not all falling on deaf ears. For that, I am most grateful.

Blogging Blithe Bluebird Bliss

April 17, 2009

Though it’s a bit blurry,  I could not resist blogging this blithe bit of bluebird bliss in our backyard birdbath:

(Can you say that sentence ten times very fast?) :-)

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Hank and Homer-Part 3: A Visit from the Easter Bunny

April 14, 2009

Okay, so I know it’s a bit soon for yet another Hank and Homer tale, but I just couldn’t resist!  [Note to the snarky dude on Twitter who mildly ridiculed my last Hank and Homer post:  No need for snark----it's just for fun.  Silly, goofy fun.  Obviously, it's not everybody's idea of fun, but it makes the five-year-old in my heart happy.  Silliness can be very therapeutic. You should try it sometime.]

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Well, look who I caught in the act!  That most venerable and worthy of rabbits—the famous Easter Bunny!  He hopped by the Doublewide Ranch to see my little friends Hank and Homer because they…believe.  

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Hank and Homer really enjoyed their first Easter Egg hunt and had quite a haul!  Here they are counting their eggs.  They loved the bright, happy colors.  But there were a few hiccups along the way when…

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…Hank (who is easily distracted) started picking the pretty pink flowers instead of looking for eggs, leaving Homer to find them all.  Then…

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…that rascal Homer frightened poor Hank with a very silly Easter bunny disguise.  Of course, they both ended up laughing.  But then…

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…Hank was startled again when a bee landed on his head and made a bee-line for his ear! But, luckily,  the little critter bee-haved himself, was quite bee-nign, and was soon bee-gone, but not before creating quite a buzz!  

But sometimes even the best of friends bicker.  And so it was with Hank and Homer…

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…when they tussled briefly over the huge egg that they both found hidden in the daffodils.  But Hank and Homer are good eggs, and in the end…

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…they found a way to share the big red egg.  At first, they were just being silly, but then Homer got the notion that the egg halves looked like motorcycle helmets and that maybe he and Hank would look really cool on motorcycles.  “Hey, we could hit the highway on Harleys, Hank!” said Homer happily.   But Hank was not so thrilled at the thought (although he did enjoy the alliteration).  He’s the sort of fellow who likes to amble along at an easy pace and and stop and smell the flowers and touch the flowers and pick the flowers and roll in the flowers and sometimes even taste the flowers.  And how would they ever be able to hear the birds singing on a noisy motorcycle?  Also, Hank pointed out (very sensibly he thought) that perhaps driving a motorcycle was not the smartest idea for a couple of invertabrates without opposable thumbs.  (Opposable thumbs are very, very useful!)  Homer had to concede that Hank had a point, but he was a little sad because Homer loves adventure.  And Homer loves roadtrips.

But he loves Hank more.  So Homer agreed that maybe it was adventure enough to climb trees and play with gnomes and ride old Pinky and old Blue.  And adventure enough to ride their imaginary Harleys (very, very quiet Harleys!) down the endless flower-strewn roads of their dreams.

Promise

April 10, 2009

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(Honeybee finds our peach tree blossom)

Our Lord has written the promise of the resurrection, not in books alone, but in every leaf in spring-time. 

                                                               ~Martin Luther

A Blessed and Happy Easter to all.   

Benjamin Says It Best

April 7, 2009

April is National Autism Awareness Month, and I had planned to write a new post about autism today.   But I realized that nothing I could write says more about the experience of being autistic than the essay my son Benjamin wrote when he was in high school, which I featured in this post last year.   I hope you don’t mind a reprise—I think some things are worth repeating.  (If you’d care to read more about our experience with autism, click on “Autism” under “Categories” in my sidebar.)  And to learn more about autism in general, a good source is TEACCH in Chapel Hill, NC, where Benjamin was diagnosed. 

(All words in italics are the work of Benjamin)

Last year, my son Benjamin entered an essay contest for high school seniors through Newsweek magazine. The prize was scholarship money for college. He didn’t win, but, really, that was irrelevant. What was truly important in his essay, “Like One of You,” was the very first line.

To whom it may concern in the world: I’ve been in the closet for all these years, so to speak.”

Such a simple sentence—but the beginning of a profound transformation. That first line was his first step out of the closet and into the light.  For the first time, Benjamin was able to see what we have seen from the time he was born—what a precious and wondrous child of God he is. And for the first time, Benjamin was able to finally love himself the way we love him—for who he is.

Benjamin told the world that he is autistic.

“Yes, I’m autistic. A lot of people, when they hear “autism,” picture Dustin Hoffman in Rain Man with his supernatural mathematical ability. I am not a human calculator, nor can I tell you what day of the week January 3, 1971 was. Although autism affects people in different ways and varies in severity, most autistic people I have known are just regular human beings who want what everyone else wants—to be loved and accepted for who they are.”

It broke my heart when Benjamin used to beg me not to tell anyone about his autism. But even more heartbreaking, almost unbearably so, was how viciously and relentlessly he was teased and bullied in elementary school. It was a daily assault on his spirit and part of the reason he felt a sense of shame for who he was. His worst year was fourth grade. Most afternoons after school that year were spent trying to undo the damage done to his soul that day, to bind up the wounds to his heart. I’d sit and talk with him sometimes for hours.  But I never knew how to answer when he asked me why people are so cruel.  When I told his teacher what was happening, she dismissed it with a wave of her hand, “Oh, bullying’s just a part of growing up.” Benjamin, at the age of ten, told me that he wished he could die. He’d say that he wished God would take him home to heaven because the world was too hard a place for him to live.

It’s funny how bullies have a built-in radar for people who are different. Between them and kids who were simply uneducated about autism, my elementary experience was pretty miserable. Our family moved three times in elementary school alone to find the best place for me. My social awkwardness always attracted a constant stream of derision. It just took me a little longer to figure out that, no, not everyone wanted a hug all of the time (I later discovered that’s what relationships are for) and why some people could say something funny and get away with it while I would get in trouble. Kids saw this vulnerability and seized on it. I can’t tell you how many times I would get into trouble because the other kids would tell me to make a certain vulgar gesture or joke. In my naivety, I would do it in front of everyone, thinking that their laughs would finally gain me some sort of hard-earned popularity. But it didn’t, especially with teachers. Some teachers viewed me as a troublemaker and would chastise me. In fact, the only “friends” I made in elementary school were bullies looking for easy targets to torment.”

I’m writing about Benjamin now because he told me I could. Not only has he come to love and accept himself for who he is, but he wants the world to know about autism. April is National Autism Awareness Month, so I’m going to be writing about Benjamin and autism on my blog for a little while. But for now, I’ll let him speak again. After all, he does it so very well. I’ve been praying all these years that Benjamin might someday be able to sing loudly and proudly the song of himself. It’s a beautiful song. And so he does. Praise be.

“What we really need right now is a joint effort of teachers, parents, and students to learn and to teach others understanding and acceptance of those who are different….Parents of non-autistic children need to help their children to better understand differences in others and to accept them. Teachers should realize that what comes naturally to most people has to be learned by autistic people—we aren’t trying to cause trouble. And students need to think about how the taunts and insults that they casually toss off cut deep into our hearts. Just because someone isn’t a born sophisticate doesn’t mean that they are insulated from normal feelings. We’re really just one of you.”

Hank and Homer-Part 2: Hank and Homer’s Odyssey

April 2, 2009

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When I wrote about Hank and Homer (who at one time were  gloves and socks) and how they came into being here, you probably thought you’d seen the last of them.  Well, I  can’t help it—–I just love the little fellas.  And not just because I made them.  They make me smile every time I look at them, so if you’re reading this and thinking, “Good Lord, I can’t believe a 51-year-old-woman would be playing with a couple of stuffed animals!” well, I’m afraid you’re on the wrong blog and you should probably go read Nietzsche or something.  Wait a minute, even Nietzsche said, “In every real man a child is hidden that wants to play.”  Well, there you go.  And, thank God,  my inner child is always ready to play.

Anyway, Hank and Homer are finally starting to feel comfortable around the other invertebrates.  Homer was a little sensitive about his resemblance to Homer Simpson, so I made him a hat (out of a sock!) that I think somewhat mitigates the unfortunate resemblance.  He’s very fond of his new hat, but Hank’s a little jealous.   He wants a hat, too.  They’ve been working a lot on self-improvement (people are always telling them their heads are full of fluff!).  So they’ve been reading the classics.  As you can see, they started on Moby Dick, but then they heard the birds singing outside and saw the flowers waving in the breeze and knew it was time for an adventure! 

First up:  a ride in Mr. Gnome’s wheelbarrow!  For Hank, at least.  Homer just wanted to lie in the creeping phlox and bask in the warm spring sun.

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Giddyup, Pinky!  Hank takes a ride on old Pinky, while Homer…

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Rides old Blue.

Time for a little tree climbing—- into the flowering pear tree.  There were about ten thousand bees buzzing around the pear tree flowers.  Hank and Homer loved being in the bee-loud tree.  They even found a bird’s nest there!

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Look!  The dandelions are back!  Time to make a wish.  Hank wished for a hat just like Homer’s.

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But all that activity and fresh air makes little invertebrates kind of tired.  So back inside they went to watch the NCAA tournament on TV.  Sure, Hank and Homer’s TV is a little small and old, but watching the Tar Heels play basketball is exciting no matter how you’re watching it!  Go Heels!

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Not that they watch much TV.  They’d rather read.  After they finish Moby Dick, Homer is thinking about reading another book he heard was really good, if a mite long.  He really likes the name of the author—- Homer.  And he finds the title very exciting—-The Odyssey  (he does like a good adventure tale!)   Hank’s not so sure that these classics are all they’re cracked up to be.  But he’ll read The Odyssey if that’s what Homer wants because he likes to make him happy.   Because they’re best buddies.  And they always will be.


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