Benjamin

(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

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.

 

Benjamin Raps

When Benjamin was in the sixth or seventh grade, he wrote a rap song.  It’s not like what you might hear on the radio or blasting from the car next to you at the traffic light.  No…Benjamin spoke the truth.  I love this because it marks the point at which he was beginning to break free of the bondage of believing the ill-conceived and ill-founded opinions of others and learning to see the truth of who he really is. He was beginning to move towards acceptance, not only of his autism, but of every part of his being.  I think it is remarkable that he was only a middle-schooler at the time—I believe he shows great wisdom and insight. 

Personally, I’m afraid I’m still not free of that bondage.  I’m still learning from my son, but I have a ways to go.

His teacher at the time wrote on the paper, “Truth!!”   Amen!

Testify, Benjamin!

Image Isn’t Everything

 I’m Benjamin and I’m here to say—
Anyone’s image can be a false display.
If you think looks say it all
Get ready to take a fall.

Personality—
It’s the true reality.
Many girls are hot,
You find that a lot.

What is hard to find
Is a chick who is kind.
A girl who is smart
And takes you to her heart.

Take it from me.
It’s not what you see
But what’s at her core
That really matters more.

 

 

How to See Rightly

Other than my short story, the only thing I’ve written about autism in the sixteen years since Benjamin was diagnosed was this editorial.  I wrote it five years ago, when Benjamin was almost fourteen, during Autism Awareness Month.   It was never published either, so almost no one has read it. (It provides a couple of links to sites where you can learn more about autism, if you’re interested.  I hope you are).

It occurs to me that, quite likely, most of you reading this are already teaching your children the values I speak of, so perhaps I’m just preaching to the choir here.  But I feel such a need to shout this to the rooftops, to make my voice heard, because it seem to me that too many parents still aren’t teaching their children how to see rightly and perhaps aren’t seeing rightly themselves. 

So, just for the chance that there might be one person out there reading this that might be moved to think and contemplate change, here’s my piece, written in April of 2003:

How to See Rightly

Down East, where I grew up, was a great place to be a shy and quiet person.  My Daddy pastored small churches near Wallace and Warsaw, and most of the people I knew and loved there were country people who measured their words and weighed yours and gave you time to reveal yourself.  Which, of course, is a good thing if you’re like me—reserved and slow to speak, but generally worth knowing.

 

Now it seems that people seek instant everything—instant food, instant mail, instant answers, and instant appraisal of a person’s worth and value.  I’ve found that shyness and quietness are often equated with dullness, or even stupidity.  In general, people give you about two minutes to reveal yourself, which means that those of us who are slow thinkers and talkers are often dismissed as unworthy of further conversation.  Meanwhile, the glib, clever fast talkers seem to thrive (I call it the “game show-host syndrome”), whereas among the folks I grew up with down east, they might be regarded with mistrust and suspicion.  Now, it seems to me, image is everything and substance means little.  I believe this is a dangerous thing.

 

It is dangerous when people are elected or promoted to a position where the public good is at stake, in part because they have a polished, blow-dried appearance or can repeat over and over a phrase like “I believe in good American values!”  It is also dangerous when people are rejected because of the way they dress, their skin color, their sexual orientation, their bank accounts, or how clever they are with a quip.  But it is heartbreaking when your own child is rejected because they are different.

 

If you asked me to describe my 14-year-old son, I might first mention this: he is autistic.  (Autism is a brain dysfunction which affects language and communication, social functioning, and, often, intellectual development).  Yes, I might tell you that, but for one reason only—so you might look beyond that, into his heart and soul.  Autism does not define him.

 

I often quote a favorite phrase to my children from The Little Prince by Antoine de Saint-Exupery.   The fox tells the Little Prince a secret:  “It is only with the heart that one can see rightly; what is essential is invisible to the eye.”  If you were to look at my son with your eyes only, you might see a boy who sometimes speaks too loud, with unusual cadence and phrasing; who might talk obsessively about one subject; or who often doesn’t converse at all.  You might dismiss him, as some classmates have, as rather odd.  But that is his autism.  If you looked beyond that, if you could “see rightly” with your heart, you would see a boy who is kind, spiritual, creative, and highly intelligent, with a wonderful sense of humor.  He is an old soul, who often surprises me with his perceptive observations.  He recently asked me, “Did you ever think about this?  When we are in pursuit of answers, they evade us.  When we are evading answers, they pursue us.”  He has taught me so much and is definitely worth knowing, but people often don’t give him a second chance.

 

April is National Autism Awareness Month, and I write, in part, to draw attention to autism.  (To learn more, go to www.autismsociety-nc.org or www.teacch.com [where Benjamin was diagnosed]).  But I also hope to make people consider the importance of looking beyond the immediate, of seeing past the image.  If we are to teach our children well, we must teach them to “see rightly.”  We must help them learn that every soul has worth and value and that we must listen well to hear each soul singing.  We must teach them to see with their heart, to look beyond appearance and image; beyond the immediate and obvious; beyond sound bites and slick talk; beyond skin color, nationality, religion, or political affiliation.  We must teach them to see what is truly essential and honest and pure and good and true.  It is one simple step towards compassion and understanding.  In listening well and seeing rightly and teaching our children to do so, we can help to make the world a better place for all.

 

Circles

Ever since my son Benjamin was diagnosed with autism sixteen years ago, I’ve found it almost impossible to write anything about our personal experiences with it.  Not that there was any lack of things to write about—I could surely fill a book with what he (and we) endured.  It’s just that every time I’d start to write and begin to explore the regions of my heart that had to do with Benjamin’s autism, I’d start to cry and couldn’t stop.  And so it was three days ago when I wrote here about Benjamin—his victories and his pain.  It took me a long while to finish because I was crying so hard, I couldn’t see to write. 

But I’ve had such a need to write about it, especially when he was younger.  So I did—in fictional form.  This allowed me, I think, just enough space and detachment to be able to write about what grieved us.  So I thought I’d post here an excerpt from the short story I wrote back then, just so you might know a small measure of what we felt when he was diagnosed.  Obviously, I changed the names, and I should mention, as well, that the experiences of Gabriel, Marilee, and Dan don’t precisely mirror ours.  But their feelings do.

So below is an excerpt from my story, “Circles.”  It was never published and almost no one has read it (until now), but it served its purpose.  The scene here is in the car, as Marilee and Dan sit numbly outside the clinic where Gabriel had just been diagnosed with autism.  And, by the way, the brochure Marilee was reading was exactly the same brochure I was given, and her experience does reflect mine:

“….Marilee touched Dan’s hand.  It was ice cold, and he was looking away, distant and seemingly focused on something beyond her range of vision.  Gabriel’s gaze was always like that—unfocused, as though he were seeing inward rather than outward.
       She could see Gabriel in the rear view mirror, moving his thumbs and fingers together rapidly, while waving his arms about.  He sometimes did that for hours, flapping faster and faster, until his hands looked like separate things—small birds fluttering all around his head.
        Marilee looked down at her own hands, full of booklets and brochures the doctor had given them, seemingly relieved that he had something concrete to offer.  She stared at one of the booklets.  Under the heading, “CHARACTERISTICS OF AUTISM,” there were stick figure drawings illustrating each characteristic.  “NOT CUDDLY” showed a small figure pushing away from the embrace of a larger figure.  Marilee remembered nursing Gabriel and how he’d pull away from her, his body stiffened, even as he drank from her breast.  “‘SPINS OBJECTS” labeled a bent-over form absorbed in spinning a ball, oblivious to the world around him.  ““RESISTS CHANGE IN ROUTINE.”   In that one, the little stick person seemed to be striking the larger figure.  Gabriel kept all his little cars lined up in precise rows on his shelf and flew into a rage if she moved them while dusting.
        But it was when she saw “DIFFICULTY IN MIXING WITH OTHER CHILDREN” that she felt her grief rising.  In the illustration, three figures sat in a closed circle, playing together.  Set apart from the group and facing away was a desolate, hunched over form with his hands up to his face.  Marilee suddenly imagined that she saw the truth of Gabriel’s future in that one crude stick figure drawing and she began to sob.
         In the back seat, Gabriel paused for a moment, his hands suspended in the air.  But as his mother continued to weep, he began the flapping again, faster and more furious, his hands like two fighting birds.
       Neither Dan nor Marilee spoke on the long drive home, lost in thought and sadness.  From time to time, they glanced in the rear view mirror.  Gabriel was now spinning the wheels on a toy car, over and over, lost in his own solitary world.”

“Like One of You”

(All words in italics are the work of Benjamin R.)

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.”