Archive for the ‘Autism’ Category

To Give To the Light

April 26, 2012

In the past, during the month of April (which is Autism Awareness Month), I’ve written about our experience with autism—about helping Benjamin as he learns to navigate the world. And I’ve written a lot about ways in which he’s felt rejected by that world and about the importance of teaching our children to be accepting of those who march to a different drumbeat. In the past few months, I’ve written about the pain of seeing your child suffer and the heartbreak of feeling so helpless to stop the suffering. There have been so many times I wished I could rock Benjamin for hours like I used to. When he was small and didn’t yet have the words to tell me what he was distressed about, rocking was our way of connecting. It was something I could do that helped, and sometimes it was just as soothing to me as to him.

So now I want to talk about hope. The last nine months have been the most difficult months I’ve ever gone through, but also the most rewarding. Benjamin’s journey back to wholeness has been arduous, and unfortunately, much of the help from outside sources we were hoping for didn’t happen. So, as when he was small, I’ve often felt as though it was largely up to me (by the grace of God) to help him into the light. So much of our profound journey together would be impossible to describe, so I won’t try. A couple of posts back I wrote this, and it probably describes it about as well as I can:

In Benjamin’s journey back to wholeness, he and I have had a lot of conversations about the importance of being your authentic self, even when people reject that self. Indeed, my children will both tell you that the #1 Mommy maxim they heard from me throughout their lives is the importance of being true to yourself. Hard for all of us, but especially hard for an autistic person like Benjamin. As an autistic person navigates the world, they are constantly challenged to conform themselves to the world in ways that are often difficult and in ways that may not come naturally. So their struggle to conform, yet maintain that inner core of authentic self, can be exhausting. And often discouraging. Benjamin’s working hard to learn that balance.

 And in helping him, I’ve often been reminded of my own need to remember the truths I know about myself, but sometimes lose sight of when I let the world pull and push me off balance. That equilibrium is so easy to talk about, but so hard to achieve. And that struggle for balance, as I tell Benjamin, is something we all have in common. It’s something we all share–whether we’re autistic or not. The important thing is to not lose sight of who you are or the sense of your own beauty. And to remember always who you are capable of becoming.

I love the recent picture above, but not because Benjamin is standing beside a fancy car, looking like Mr. Success. (the Infinity was neither ours nor Benjamin’s, by the way!). I love this photo because Benjamin looks so genuinely happy. He was about to head for an interview there—his first—which went very well, although he didn’t get the job.

But he’ll he heading to an interview in Raleigh next week—his first long trip alone and his most promising interview yet (he’s already done THREE phone interviews at the company, so clearly they like him). I’m telling you that because I’d like to ask for your prayers and good thoughts for him, please. We are very excited, but a little nervous, too. It’s a big step for him…and for us.

Benjamin and I recently realized that it’s been nine months since he first got sick. For both of us, his transformation in that time has been so profound as to seem like a rebirth. So with his birthday coming up soon, we talked about how wonderfully symbolic it would be if he ended up getting the job around his birthday, making his recovery period a sort of nine-month gestation.

Four years ago, Ariel wrote a wonderful Mother’s Day tribute to me on the blog she had at the time. I’ve gone back to it during difficult times when I needed help remembering my own worth and value, which means I’ve clicked back to it a whole, whole lot. I love the poem she wrote as a part of it, and have realized that it has meaning now beyond what she intended. Here’s an excerpt from it:

“Both times she gave birth,
she did so naturally. Each contraction
was a fiery push and pull, the urge
to keep us close and the need
to grant us to the world in an excruciating exit.
In Spanish, to give birth is
“dar a la luz,” to give to the light.
When I learned the phrase, I said it over
and over in my head. Voy a dar mi niña a la luz:
I am going to give my child to the light.
I imagined both a sacrifice and offering,
the greatest favor and the greatest risk.”

I’d be dishonest if I didn’t say I’m a bit anxious about Benjamin’s big step next week. But, as I did almost 23 years ago when he was born, I am going to give my child to the light. Benjamin’s birth 23 years ago was difficult and painful, and his rebirth in the past nine months has been often just as hard. But now, as then, all the pain was worth it. Well worth it. And I’ve never regretted it for a second.

You Can’t Judge a Box By Its Cover

January 26, 2012

Beautiful Imperfection–A battered butterfly (missing its lower parts but still flying) that we encountered on a hike

So, I tried hard to write a funny post.  The last thing I wanted to do was write again about our troubles.  Alas, I couldn’t seem to muster the light-heartedness I needed to write it well.  Not that I’ve lost my sense of humor.  No indeed.  It’s fully intact, as any of my friends or family can tell you.  Along with my sense of wonder, thank God.

The incident in question WAS funny, though.  Even if it didn’t seem so at the time.   When I saw the article in the paper before Christmas about the Senior Santa shoebox project at Meals on Wheels, I really wanted to do it.  Only problem was, I had to wrap a shoebox.  More precisely, I had to actually cover the surface of a shoebox with pretty paper in a presentable manner that did not resemble the work of a demented chimpanzee.  

Sounds easy enough, but the truth is, I am gift-wrapping impaired.  Incredibly, even gift bags are a challenge to me because I can never seem to get the tissue looking right.  So covering a shoebox seemed about as daunting as sewing that dress I was required to make in eighth grade home ec . (Poor Miss Nettie Herring—I was surely the most challenging sewing student she ever had!) 

But Dorothy,of the Wrexham Knitting Group in Wrexham,NorthWales made it look so easy!  She nimbly wrapped the shoebox with the cool, calm efficiency of a brain surgeon.  In fact, I’m quite certain Dorothy, if she put her mind to it, could easily learn and perform brain surgery.  She certainly made me believe, after I’d watched her about ten times, that I, too, could wrap a shoebox.  Until, that is, I actually tried to do it.

No need to recount every detail of the sad struggle.  Let’s just say it took me two hours, a whole roll of gift wrap, and lots and lots of tape.  Along with much wailing and gnashing of teeth.  It was a grim business, I tell you.  Until the end, when I suddenly became aware that I was breathing hard as though I’d run a marathon and that I was literally dripping sweat in a sixty-five degree house.  Which was, of course, ridiculous, and I started laughing.  Sort of like a demented chimpanzee, haha. 

Amazingly, in the end, it didn’t look too bad.  And filling the shoebox was a lot more fun than wrapping it.  I do hope that the recipient of my humble offering was able to see the love in it rather than the ragged edges.  Which, now that I think of it, is the very thing we hope for in our relationships with people.  That they can see the beauty and spirit in us, despite our ragged and lopsided edges.   That they can see that we’re doing our best, even when that best is far short of perfect.  That they can look past our differences and instead see what we have in common.  And that we may do the same for them.

In Benjamin’s journey back to wholeness, he and I have had a lot of conversations about the importance of being your authentic self, even when people reject that self.  Indeed, my children will both tell you that the #1 Mommy maxim they heard from me throughout their lives is the importance of being true to yourself.  Hard for all of us, but especially hard for an autistic person like Benjamin.  As an autistic person navigates the world, they are constantly challenged to conform themselves to the world in ways that are often difficult and in ways that may not come naturally.  So their struggle to conform, yet maintain that inner core of authentic self, can be exhausting.  And often discouraging. 

Benjamin’s working hard to learn that balance.  And in helping him, I’ve often been reminded of my own need to remember the truths I know about myself, but sometimes lose sight of when I let the world pull and push me off balance.   That equilibrium is so easy to talk about, but so hard to achieve.  And that struggle for balance, as I tell Benjamin, is something we all have in common.  It’s something we all share–whether we’re autistic or not.  The important thing is to not lose sight of who you are or the sense of your own beauty. And to remember always who you are capable of becoming.

Moving Forward

November 3, 2011

Many, many thanks to everyone who commented on my last post and to those who wrote me—it meant a great deal.  I know it’s sometimes unpleasant to read of unpleasant times (Lord knows it’s not much fun to write about them either), so I truly value those of you who have stuck with me.  I have gone back and read your kind, loving, and caring words more than once and been sustained by them.  We are grateful for your continued prayers and good thoughts for Benjamin…and for us.

Benjamin is home from the hospital now.  Our time now is filled with the slow rhythm of work, walking, talking, and quiet porch sitting, punctuated by visits from loved ones and trips into Asheville for counseling.  In some ways, the past few weeks have taken me back to Benjamin’s very early childhood, before he started school.

When something like this happens with your child, you start to question everything.  In Benjamin’s case, this questioning is even more intense because I worked so closely and intensely with him when he was small.  As I’ve mentioned before, Benjamin’s autism was much more pronounced when he was young.  If not distracted, he would spend hours rocking back and forth or spinning or even just flapping his hands and staring at them as though they were separate things. Until the age of four, his speech was mostly echoing back to us what we’d said to him. 

We had very little money then and there were few options for help for Benjamin, other than some physical therapy for his hypotonia.  Tom worked long hours as a carpenter just to keep a roof over our heads, so I felt like it was mostly up to me to help Benjamin—to convince him, in a sense, that engaging in our “world” was worthwhile.  I read everything I could get my hands on about autism, and we got some helpful suggestions from the place where Benjamin was diagnosed, TEACCH. 

The first thing I wanted to know then was what it felt like to be Benjamin.  So I got down on the floor with him and rocked back and forth to the same rhythm, trying to hear the same music he heard. Benjamin was always fascinated by light.  He’d stare at any light, rapt, as though he were seeing something we couldn’t—angels, perhaps.  He also liked to sit in the morning sunbeams as he rocked.  So there we’d sit, rocking in and out of the light streaming into our living room.  It was very soothing, actually, and I’ll have to say that I could see why he might prefer it to the unpredictable inconsistency and discomfort of “real” life. 

I’ve been thinking a lot about that, and the questions cycle through my head over and over.  What could I have done differently?  What if I’d taken him out of school and taught him at home when we couldn’t get his teachers to try to protect him from the relentless bullying? If I’d done that, how would he have learned what he needed to get along in the sometimes cruel world?  And the biggest one, I suppose: Did I even do the right thing by nudging him gently into our world?

But those are just the questions that go through my head at night, when I’m lying there waiting for sleep to come.   Really, I think perhaps questions about the past are only useful now if they somehow help to answer the more immediate and more important question:  How can we help Benjamin to find wholeness?

One morning recently, while Benjamin was eating breakfast and I was in the kitchen working, I put on the CD my dear friend Jayne had sent us.  In the note she sent with it, she said that she hoped the music would be a balm to my soul.  And indeed it was.  As I listened, I looked at Benjamin.  He had his eyes closed and was rocking back and forth, moving in time to the music.  I smiled to see that and closed my own eyes as “Be Still My Soul” began to play—the music seeming almost like warm hands stroking my weary spirit.  I rocked back and forth, too, just as had almost twenty years ago when I was trying to connect with my sweet boy, trying to convince him that my “world” was a place worth living in.  When I was trying to see that world through the eyes of Benjamin.

And, now, as it was then, progress is slow coming.  One day at the time, one hour at the time.  Two steps forward; one step back.  But now, as then, we are glad to be moving forward.  And we celebrate the smallest victories, relish the simplest pleasures, and I thank God, without ceasing, that He sent Benjamin to be my beloved son. 

Seeing Rightly

September 5, 2011

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”  (Antoine de Saint Exupéry)

I’m writing this post both to let you know I’ll be absent from the blogosphere for a while and to ask you for your most sincere and earnest good thoughts and prayers.

When I talk about our troubles in an oblique way, without giving many details, I’m not trying to be mysterious or melodramatic.  In fact, I wish I could tell you everything, to ease the burden I carry, but so much of it involves other people whose privacy I don’t wish to compromise.  Plus, who wants to hear all our trials?  It’s certainly too much to expect folks to listen to some endless recitation of our latest tribulations.  As I wrote in an earlier post, I start to feel almost embarrassed to relate another hardship.  I think, sub-consciously (or not), many people start to wonder if we’re somehow bringing this on ourselves.  You might wonder how could so many bad  things happen to one family or what we might have done to displease God.  Lord knows, I have sure wondered that.

And that is why I withdraw when things get overwhelming.  No matter how much people tell you that you should reach out to others (and I believe you should, which is why I’m writing this), the truth is, those others have their own problems, and I can’t realistically expect them to shoulder my burdens when it seems mine are endless. 

But I can and will ask you for your kindest thoughts and for your most sincere prayers.  Especially for my son Benjamin.  Long-time readers already know that Benjamin is autistic and that navigating the world is far more of a struggle for him than anyone knows.  And long-time readers also know that Benjamin’s had a tough time of it in the last two years.  An appendectomy, the loss of several loved ones, and a broken back (with lingering pain) have just added to his burden, and he has struggled for a while with depression.

And it all finally became more than he could bear.  He’s in the hospital now.  I’m telling you that because there is no shame in it.  The greater shame is in some of the things that contributed to his being where he is now.  The relentless bullying he endured when he was little when the adults that should have intervened, didn’t, for one.  I can’t tell you how many times teachers said (and they all knew he was autistic), “Oh, bullying’s just a natural part of growing up.  He needs to learn to stand up for himself.”

I’ve written before—extensively—about all the ways the world rejects those who are different (just click on “Autism” in my sidebar if you want to read those posts). But I’ll say again—please teach your children well.  Teach them first and foremost to be kind. I believe there is nothing more important.  And children learn kindness from their parents.  So…be kind.  Consistently.  If you are, you’ll never reject others because they are different.  If you are kind, you will love folks for who they are, whether they fit your narrow definition of “normal” or not.  And maybe, just maybe, you’ll figure out that perhaps they have something to teach you—something that may expand not only your mind, but your heart.

But right now, Benjamin’s heart is broken.  So is ours.  We have never felt such deep and profound grief.  So I ask you, from the bottom of my heart, for all the good thoughts and prayers you can muster.  And I thank you from the bottom of my heart for listening.

Summer at the Doublewide Ranch: An Update

September 29, 2010

(Why, yes…that IS a pink flamingo in the background!)

I’m finding it hard to write these days.  Even emails…and the comments I leave on your blogs.  You’d be surprised how long it takes for me to write those comments, as ordinary and dull as they sometimes are.   I’m not sure why I’m struggling so, but whatever the reason, I did want to give you a small glimpse of our lives this summer here at the Doublewide Ranch–in pictures.  If a picture really is worth a thousand words, then here are 10,478 of them. :-)

(Notice there are TWO monarchs here.  Monarchs in love?)

(I love that morning glories will claim anything they can reach.)

(Cosmos and the cosmos)

I also thought some of you might want to know how Ariel and Benjamin are doing.  Ariel is feeling much better, though she does feel quite tired in the evenings.  But who wouldn’t with full-time school, part-time work, and lots of trips back and forth from Chapel Hill to Raleigh where her fiance works and lives? Benjamin’s broken back seems to be healing well, especially considering he walks miles a day all over campus, lugging books and laptops and such.   Thank God the young are fast healers.   Physically, at least.

But the heart’s a little trickier.  If only a broken heart were as simple as a broken back and you could rest in the assurance that that broken heart will knit itself back together in a few months time, with a little extra care.  But, of course, nothing’s simple when it comes to the spirit.

Benjamin is feeling sad.  I wasn’t going to mention this, but it occurred to me that not mentioning it implies that I think there’s shame in being depressed.  But there’s not.  And I don’t.  It’s been a tough year for my boy, and…well…life has never been easy for him.  Sometimes, the world is not kind to those who are different.  Really, it’s hard for any of us to be completely “ourselves”  because we are so often burdened by other’s expectations of us. But it’s especially hard when you’re autistic, as Benjamin is,  and you’re constantly expected to adapt yourself to a world you don’t completely understand. 

Benjamin is the bravest and strongest person I know, but he’s struggling these days.  And there’s no shame in that.  And there’s no shame in my being honest, either, even if reading this makes some uncomfortable.  I simply cannot manage a pretense of happiness right now.  

So I’m asking for your very special prayers for a very special child of God–my beloved son, Benjamin.   May he know how much he is loved–by his family, by his many friends, by my readers who have come to know him through my posts.  But even more, may he know how much he is loved by his Creator, his Heavenly Father, who sent him to us so that he might shine his unique and lovely light in our lives and in this world. 

And Benjamin’s light  is a beautiful, blessed, and holy light indeed.  May he always see and know that, too.

Teach Your Children Well

April 7, 2010

(Benjamin gives Dolly a kiss)

It’s April, and not only are the birds singing and the pear trees blooming here at the Doublewide Ranch, but it’s once again National Autism Awareness Month.

As long-time readers know, my son Benjamin is autistic. Anyone who might be interested in reading about his experiences growing up autistic can click on “Autism” under “Categories” in my sidebar.

As I’ve looked over my previous posts about Benjamin, I’ve wondered if I’d painted too rosy a picture of his life now. Don’t get me wrong—he really has come a long way from the days when he’d rock back and forth, when he’d scream if I deviated even slightly from our usual route to the library, when he barely talked except to echo what others had said. Yes, a very long way indeed.

But when you go through the bullying and torment that Benjamin did growing up, simply because he was different, it leaves a permanent mark. Especially for a sensitive soul like his. Sensitivity can be a blessing and a curse. A blessing because you often see and hear and feel the beauty in this world that others overlook. But a curse, too—because this world is not always beautiful.

I’ve written before about the importance of teaching our children to embrace those who are different, as has Benjamin. But I thought it was worth repeating, because sometimes it seems that folks are becoming less and less tolerant and more and more disparaging of each other’s differences. So please forgive me for preaching once again (and,very likely, preaching to the choir).

My last post expressed the importance of not judging people by their outward image, by the things that hide the truth of who they are, and how we are all subject to the temptation of being judgmental. Sometimes those who congratulate themselves the most for their open-mindedness and eagerness to embrace diversity can be the least aware of how narrow their definition of diversity is.

When I was in my early twenties and far more naïve and innocent than I am now, I went to a party in Chapel Hill with the newspaper reporter that I was dating at the time. The party was a reunion of sorts of some of his classmates from the School of Journalism at UNC-Chapel Hill. They were mostly journalists in their 30’s from newspapers in Raleigh, Durham, and Chapel Hill who would have, for the most part, called themselves open-minded, tolerant, and progressive.

When Rob told me we were going to the party, I was really nervous. These people were all sophisticated college graduates, some of them with master’s degrees. I wasn’t. I pictured a party where everyone was having intellectual discussions and eating fancy hors d’oeuvres and drinking dry wine with their pinky fingers extended. So I dressed up in my Sunday best, with panty hose and heels and makeup and extra hair spray. Like I said, I was naïve.

When we got there, I saw right away that everyone else was in t-shirts and shorts, drinking beer and playing volleyball. My heart sank and my face turned crimson, but I was determined to make the best of it. Surely all these open-minded journalists wouldn’t care what I was wearing. Isn’t journalism all about looking beyond the outward appearance to find the truth?

The snickering started almost from the minute I got out of the car. At first, it was subtle–a snicker here, a snide remark there. But as they got drunker and drunker, the ridicule became more open, especially when I gamely tried to play volleyball. (Yes, I did look ridiculous, but like I said, I was trying to make the best of it.) One of them wondered where Rob had found the “redneck girl.” Another asked if I was looking for the Baptist church down the road. It would have helped a lot, I guess, if I’d gotten drunk, too. But I’ve never really been into that. Seems like it too often turns people into jerks.

My point is—even people who think they are enlightened and unbiased and open-minded can be provincial in a way that’s sometimes subtle, but no less bigoted than anybody else. In their case, it’s often hidden behind a thin veneer of political correctness, but all it takes is a naïve country bumpkin girl (as I was) to bring it out. Even our local progressive alternative weekly paper (that has many fine qualities otherwise) fairly often features cartoons that make fun of local white country people, in subtle and not-so-subtle ways. They’d never think of ridiculing minorities or gays (and that’s a good thing, of course) but uneducated country white people are fair game.

What I’m saying here is that we need to be teaching our children that it’s not okay to make fun of ANYBODY because they’re different from us, whether it’s their skin or the way they dress or even the way they talk. That is true “diversity” training. And we need to set an example by never ridiculing other people in front of our children, no matter who they are. Some of Benjamin’s worst bullies in elementary school were the children of highly educated professionals who, no doubt, taught their kids not to make fun of minorities or gays or people in wheelchairs. But apparently, they didn’t go far enough. I always made it clear to my children that they would be in some seriously deep doodoo if they EVER made fun of anyone.

But they never did. They have always been tolerant of differences (especially their weird mama!), and I’m happy to say that they both have friends who are black and white, gay and straight, loud and quiet, Buddhist and Baptist. And I think they know that their lives are far richer for having opened their minds and hearts to all kinds of people.

Benjamin really is doing well overall. He’ll be a senior in college next year in the Honors program and has so many friends that I sometimes can’t reach him on the phone. But he still bears the scars of the cruelty he endured. Sometimes the pain manifests as anger; sometimes, as depression. The wounds were deep and painful, and while the scars have faded some, they linger.  And seeing his sadness still breaks my heart in two.  

All because of children who weren’t taught that all souls have worth and value—no matter how they look or talk or dress or worship. No matter what drumbeat they march to. Even those who march just a little out of step.

Things Are Seldom What They Seem

April 21, 2009

benjamin-blog1

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.

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.”

Benjamin

April 26, 2008

(Benjamin wowing the crowd at Open Mic)

This will be the last post I do for a while about autism, but I couldn’t end the series without telling you about how Benjamin is doing now.  Well, I am happy and proud and enormously grateful to be able to say, “Very, very well, thank you.”   I wrote in my short story about grieving (after the diagnosis of autism) “the loss of the dreams and visions for her child that had begun in her heart with the first stirrings of life in her womb.”  Yes, it’s true that, for a while, you do grieve the death of old dreams.  But, soon, new dreams begin to take their place; hope begins to push away fear; and perhaps even, your new visions are truer and more benevolent, in that they are based more on the essence of who your child is rather than your own ego.

Benjamin is in college now after an illustrious high school career.  Really, he didn’t care much for what he considered the silly drama of high school, but he did exceptionally well, both academically and personally.  Not only was he at the top of his class, but he performed in the jazz band (playing guitar), played at Open Mic,and and often performed at benefits.  He was a junior marshal and was chosen to attend Governor’s School which anyone who lives in North Carolina knows is a great honor. 

I always told him he’d like college better than high school, and indeed he does.  He is thriving there and has found a church where he is accepted and welcomed for who he is. (Shouldn’t all churches be that way?)  Sure, he still faces challenges and sometimes struggles, but don’t we all?  And, sure, his challenges are bigger than those of most people, but I think his heart is big enough to handle it.  Really, to be perfectly honest, for him and for us, dealing with the cruelty, the judgment, and the ignorance of other people has been our biggest challenge.  Not the autism itself.

And, by the way, Benjamin is an amazing guitar player.  Now I know you’re smiling indulgently, thinking that I’m just another biased mother.  Well, sure I am, but, really, he is an amazing guitar player.  He plays everything from Bach to blues.  My favorite, of course, is the version of Ave Maria that he learned just for me, sounding very much like Chet Atkins.  I also love his own personal interpretation of Windy and Warm, which he arranged himself after listening to Doc and Merle Watson play it.  Not to mention the incredible Little Wing, played in the style of Stevie Ray Vaughan.  Honestly, he sounds like he is channeling Stevie Ray.  In fact, Chet Atkins, Doc and Merle Watson, and especially Stevie Ray Vaughan are his musical heroes. (When he was younger, he laboriously punched out a fan letter to Doc Watson in Braille. Never did hear back though).  

Benjamin is MY musical hero. 

(Benjamin and his Stevie Ray Vaughan guitar face)

Back when my children were very, very small, I had this little ritual that might sound kind of silly, but they LOVED it.  After their baths, when I’d be drying them with a big towel, I’d throw the towel over them and say, “Oh my, look at this, a special package from Heaven!  I wonder what it could be?”  Then I’d pull the towel away a bit at the time.  “Oh, look!  What beautiful hair!”  Then—“Oh my, what a perfect ear!”  “Oh goodness, those eyes are the loveliest color I ever did see!” 

By then, of course, they’d be giggling and they usually couldn’t stand the suspense any longer and they’d pull the whole towel off.  Then, I’d gasp in delight and clap my hands and say, “Well, would you look at that—it’s just the son (or daughter) I always wanted!  Thank you, God!”  Yeah, maybe it sounds corny, but Benjamin and Ariel wanted to do it every single time.

Benjamin recently told me that if he could have the choice to be autistic or not, he would still choose to be autistic.  He feels it has made him a stronger and more compassionate person.   “I would choose to be just who I am,” he said.

And that’s exactly what I would choose, too.  Benjamin—just as he is.  Just the son I always wanted

Thank you, God.

Thumper Was Right

April 25, 2008

Here’s another excerpt from the short story I wrote about autism when I was unable to write about it directly.  The only difference between my experience and Marilee’s is that my naysayers and advice givers were family members, which, I think, made it all the more hurtful.  I needed support, not ill-informed advice.  One of the most important things I could say to those who wonder how to help their loved ones whose child has been diagnosed is to educate yourself about autism and its manifestations.  There is so much good information out there—you have no excuse to be ignorant.  Another piece of advice?  Well, in the immortal words of Thumper, the little rabbit from the movie Bambi:

“If you can’t say somethin’ nice, don’t say nothin’ at all.”

Here’s the excerpt from “Circles:”

Over the next week, Marilee and Dan told friends and family about the diagnosis.  Marilee wasn’t sure what she expected or even wanted their reactions to be.  She imagined them bringing casseroles, cakes, fried chicken.  Maybe coming in to clean her house, wash her dishes.  Giving her time to grieve her loss—the loss of the dreams and visions for her child that had begun in her heart with the first stirrings of life in her womb.

But she knew that wouldn’t happen.  Women bringing casseroles meant someone was ill, injured, or dead.  The death of dreams didn’t count.

But people did come.  Not with cakes and soft murmurings of sympathy, but with brisk admonitions and advice.  Their next-door neighbor, Lynette, had taken a psychology course at the community college and ever since had borne out the adage that a little knowledge could be a dangerous thing.

“Listen, honey, I know,” Lynette had said.  “This boy is not autistic.  I saw autistics when our class volunteered at the state mental hospital.  They were banging their heads on the wall and hollering.  Gabriel is NOT autistic!”

Lynette had said this with a sense of smug self-satisfaction, as though now they could all rest easy—Gabriel was not autistic after all.  Marilee supposed it would do no good to point out that the clinic where Gabriel had been diagnosed was considered one of the leading authorities on autism in the world.  She sat stunned as Lynette went on about the “autistics” she’d seen at the state hospital, as though she was talking about the habits of zoo animals.

At church, Lorna, a woman in her Sunday School class, had drawn her aside.  Lorna considered herself a notable member of the congregation, and indeed she was, along with her five children.  They stood out on Sunday morning because the pews around them were always empty, except for the occasional hapless visitor forced to endure an hour of Lorna’s children kicking the back of the bench, talking aloud, or poking the visitor’s back.  These visitors were usually never seen again.  Some members secretly speculated that Lorna’s family might be a major factor in declining church membership numbers.

Lorna was always reading the latest books on raising a family and was eager to share her knowledge on how to rear the theoretical children she thought everyone had.  She was especially fond of catchy bromides, which she quoted reverentially, as though they had come straight from the mouth of God.

“Now, Marilee, you can’t keep this boy in a cocoon!” said Lorna.  “We must give our children not only roots, but wings!”

Marilee’s mind flashed back to the stick figure drawings in the brochure on autism.  She pictured the one that showed a figure darting out in front of a car.  “NO FEAR OF REAL DANGERS” was the caption.  She could almost hear the screeching brakes. 

Lorna had gone on, talking about how we must let our children learn from their experiences or something like that.  Marilee really hadn’t heard.  She was learning to tune these people out, like so much background noise, just as she had her minister when he spoke of Gabriel and his “affliction” as being part of the perfect will of God.

 


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