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Making Doors

  • Posted on February 21, 2014 at 10:00 AM

As much effort as I intend to expend on changing the tract that Alex has been placed on, the long-term goal isn’t necessarily to “tract” him at all. You see, Alex has talent. Alex has had many disadvantages and has foregone the typical art instruction children receive in the United States for many years, yet he has an extraordinary interest and talent with visual arts.

These aren’t just the words of a proud mother. I know that I have little skill in assessing any form of visual art and even less aptitude in creating them. So, the best I could discern was to recognize that Alex’s art—indeed the art of all four of our boys—is better than anything I can produce, and to recognize (from the art training I have received) certain qualities that seemed rather remarkable. But, even to me, this didn’t mean much. So, I obtained the opinions of others who have more skill with assessing and creating visual arts. Turns out, I wasn’t wrong. In fact, the reactions I’ve gotten to Alex’s artwork (not to mention the other boys’) has been quite enthusiastic.

Now, as a professional writer, which is a form of art, I know how difficult it can be to make a career out of a talent and interest in a particular art form. Even when you have the advantages of encouragement, advanced schooling, and more or less “normal” interpersonal skills, advancing a career in the arts is a huge challenge. Many people try and more fail than succeed. The automatic conclusion is that it would be ridiculous to pursue such a path for Alex, because the odds are very much against him.

Yet, I also know that there are people with disabilities, even profound disabilities, who do pursue art as a career and do succeed in their endeavors. I also know that Alex experiences joy when creating his art and he experiences joy when sharing his art with others. Now, Alex experiences joy doing several different things—watching videos and swimming are prime examples. But art is one of the few things that he experiences joy when sharing it with others. This is significant in ways I can’t even articulate. If you get it, good; if not, well, then, I guess you’ll just have to take my word for it.

So, yes, the odds are long. Yes, it’s not something that will earn him a living right out of school. Yes, it’s something that will require special support just to make it possible. But it’s worth it. It’s worth pursuing. It’s worth it, because everybody deserves the opportunity to at least try to do what they love for a living.

So, you see, I’m not just looking for backdoors to open up a more acceptable tract for my son. I’m going to make the doors he needs to do what he loves.

Unleashed Creativity

  • Posted on January 17, 2014 at 7:56 AM

Alex’s teacher mentioned that he’d been playing with Legos at school. We’ve had Legos in the past, though they were usually reserved for Brandon. We didn’t want the younger boys playing with Legos, because of the mouthing issues, so we’d stuck with Mega Blocks for them. The boys had changed, but our patterns hadn’t. So, this Christmas, when I took my brother with me to shop for the boys’ presents, my brother picked out a big box of Legos-substitute. (All the Legos came in predetermined constructions and we wanted enough blocks for Alex to make whatever he wanted.)

Alex was really excited to receive a box of blocks, and when we got home Mark unearthed all our Legos blocks that had been hidden away—here and I’d thought he’d gotten rid of them! Now, Alex had three boxes of blocks to play with. He got started right away, trying different things, exploring what he could do with the blocks.

Then, during his first day back to school, Mark and I went through Alex’s room and cleaned out all the miscellaneous things, discarded two mattresses and boxsprings, replaced them with a single mattress, and put in a toy chest. We also placed all three boxes of blocks in Alex’s room. This left a lot of open space for Alex to play and explore his blocks in.

He’d had his blocks for a week and his “new” room for a day, when he made this:

Then, he made this:
A House made out of multi-colored Lego blocks with a door, windows, and white picket fence.

My brother, who is studying to be an architect and grew up playing with Legos, was very impressed. He took pictures, made them into Tweets, and shared them with others. The general consensus is, “The boy’s got talent!”

April Showers

  • Posted on July 5, 2013 at 10:00 AM

I had already graduated from high school when Columbine became short-hand for school massacre. For a single year, I had attended classes in a fairly rural high school; due to the poor academic offerings, I took college classes for the remainder of the last two years of my high school experience and only went to the high school building to fill out paperwork. Still, I remember very little security in my high school building.

Yet, there was abundant evidence of the potential for violence in my high school. Although we didn’t have gangs—at least none that I ever knew of—and there was relatively little blatant crime, bullying was rampant and went unchecked. Walking through the halls, I heard everything from threats laced with racial slurs to plans to get girls too drunk to realize they were having sex. It was an unpleasant place and I was happy to escape to the more civilized college environment.

When I heard about the Columbine shootings, I found I wasn’t as surprised and shocked as others seemed to be. I could imagine it. I could kind of, sort of understand it. Not that I had ever even entertained such an idea. But I knew people who might have and I understood why they would think about it. And I knew, if they had been pushed just a little bit further, they may even have acted on the impulse.

With all the violence that’s been going on in our society, I’ve shied away from the gorging of the media frenzy. I don’t like the way “freedom of the press” has been transformed into a form of harassment and invasion of privacy, whether it’s celebrities or disaster victims, man-made or otherwise. I also don’t like the way so many try to “cash in” on these disasters, either for profit or for political gain.

So, I was kind of surprised to find April Showers in my Netflix queue. It’s a movie about a school shooting. I wondered why I put it in there. I looked it up and found out that it was written and directed by Andrew Robinson, a Columbine survivor. Then, I remembered that the movie had been recommended in one of my classes.

Art is one of the ways we try to come to terms with the incomprehensible reality that surrounds us. April Showers is an honest exploration of a traumatic event, capturing the horror and the aftermath without relying on gore or sensationalism to tell the story. Life is full of consequence. If we thought a little more about it, then we’d all be able to live better lives.

Light Box

  • Posted on July 1, 2013 at 10:00 AM

My brother, Patrick, is a fabulous uncle to his three autistic nephews.

Now, in our case, we’re luckily enough to be blessed with a really understanding, supportive family who not only accept that our boys are different, but go out of their way to accommodate these three precious members of the family. We’re surrounded by this loving effort year-round, on all sides.

And I know this is a substantial blessing, because I talk to other parents and am often saddened to hear how other autistic children are excluded from events shared by their families. I think back to when the boys were little and none of us knew what was going on and remember just how hard it all was for everyone. So, I get it. I do.

But, at the same time, I don’t, because once we knew what we were dealing with our entire family made an effort to include these three special children. No ONE, not even one member of my family, has made my boys unwelcome. It took effort on all our parts, but the effort was made. And it works. Sure, our family events are different than they otherwise would be, but they do work. And, believe me, I know how lucky we are and how very blessed we are, because I couldn’t do what I do without all this wonderful, heart-warming support.

So, it’s not like my brother is a novelty when it comes to embracing my children as they are.

And yet, my brother is a novelty, because he gets my boys in a way that nobody else does, that nobody else would think of. Including me. Including Mark. Patrick understands a part of them that is its own special connection. And I’m constantly astounded by this, because he’s able to do this despite the distance that often separates us all.

My brother came for my commencement ceremony and during this visit the magic happened with a light box. Technically, a light box is not a toy. It’s a fancy tool that artists and architects use to do work. Patrick had one, and he decided to give it to his nephews.

M – A – G – I – C

It’s that simple.

Willy was fascinated. Alex was captivated. And Ben…adorable Ben. I turned around and saw Ben listening to the light. He was smiling, enjoying it, and listening to the light. I haven’t tried, so I don’t know if I could hear what he heard. But…that was so Ben and so strangely appropriate.

M – A – G – I – C

I can encourage my boys in their art. I can supply them with materials. I can look for opportunities. And I’m not alone in this. Many members of our family have contributed to their love of art, which gives them such joy.

But my brother understands this on a deeper level. On a light box level. And it’s its own kind of magic.

Autism In Art?

  • Posted on November 3, 2012 at 8:00 AM

I’m reading a book called Initiate by Tara Maya and I recently encountered a passage that felt very autistic. She described a magical being that was forced to interact in a human world, using sensory disorientation, sensory seeking behaviors, and social inappropriateness and confusion that seemed to me very much like an outward expression of autism.

So, I got curious. I found two posts on her blog that mention autism. First, back in 2008, she wrote a post that connected “theory of mind” to novel reading and writing. She quoted Lisa Zunshine’s book Why We Read Fiction: Theory of Mind and the Novel: “…it is our ToM [Theory of Mind] [which] makes literature as we know it possible.”

Maya then writes:

Perhaps novel writers suffer not just from hypergraphia, but from over-excitable mirror neurons as well. Thus we have a compulsion to both imagine what other minds are thinking and to then write about it. This could constitute a sort of inverse of autism, which renders it difficult to imagine what other people are thinking and feeling.

I wonder if Maya or, for that matter, Zunshine and Baron-Cohen (whose research is used in Zunshine’s book), realize that there is such a thing as an autistic author? That people with autism and Asperger’s do write fiction?

This post implies that Maya may have a curiosity regarding autism, but relies on non-autistic “experts” to form her impressions of the disorder. If so, this wouldn’t be an example of “autism in art,” but an example of “unconscious prejudice in art.”

But there’s a second post. In 2009, she wrote:

According to the cognitive science ‘theory of theory of mind’ (sic) we are all mind readers, to a greater or lesser extent. Those of us closer to the autistic side of the spectrum may prefer genres which tend to have flatter, easier-to-read characters, whereas those with highly honed hyper-acute mind reading skills may find flat characters painfully boring.

This almost suggests that she might include herself as among “those of us closer to the autistic side,” and yet she’s writing and reading fiction and still, seemingly, buying into the “theory of mind” bit.

Either way, it seems to me that if Maya wants to understand the autistic side of things, then she’s better off talking to people with autism than relying on non-autistic “experts” to interpret what it means to be autistic for her.

Artistic Expression

  • Posted on March 16, 2012 at 8:00 AM

Both Mark and I have artistic talents.  For Mark it’s singing, and some drawing and some photography (though, he’s never pursued those); for me it’s writing, obviously.  Our boys, all fours of them, have artistic talents as well.  Brandon, Willy, Alex and Ben all draw.  They do it for fun, but each has enough talent that they all could pursue it as a hobby or a vocation.  They all love music, too, though Brandon is the only one who wants to take that interest beyond personal pleasure, at least so far.  Willy has developed an interest in cinematography, though he doesn’t know the word.  He likes to watch and make home-made videos, particularly a kind of video called “Let’s Play” on YouTube.  Alex is mostly interested in drawing/coloring variations on Veggie Tales themes.  Ben’s interests include drawing a variety of images he picks up, mostly from movies or videos.  He’s even getting to the point where he can tell me a little about what he’s drawing.

Art as Communication

Right now, the younger boys (including Willy) mostly use their art as means of entertainment and expression, but art is also a form of communication.  They communicate their interests and their thoughts with what they draw.  Alex shows his peculiar vision, distorting, instead of recreating, some of the images within the pictures he colors, which I find fascinating, though I have no idea how to interpret these works.  Willy draws what interests him, what he’s fixated on.  For example, when Willy was obsessed with crying, he drew a lot of his characters with big crocodile tears.  Now, he’s drawing them in grids, showing their ranking—competition is a big focus for him now.  He wants to know where people stand.  Ben’s drawings vary from the various Dreamworks logos he’s seen to scenes from video segments he likes.  He doesn’t communicate what he wants so much as what he has watched; whereas most of Alex’s scenes are created from memory, and if you put the associated video on, he then tunes into the video, at least for a while, instead of stimming over the opening sequence.

As their skill with artwork advances, I expect they’ll be able to communicate more complex thoughts and emotions (I’m seeing some of that already).  Unfortunately, visual art isn’t my medium, so I’m a bit worried that my inability to interpret or understand their work is going to be a stumbling block for us.  Perhaps it already is.

Art as Vocation

One of my hopes is that, when the boys come of age, they’ll be able to pursue careers that interest them, that utilize their skills and talents—careers that they can be successful in despite their disabilities.  It is my belief that everyone should have the right (or perhaps the privilege) of trying, though not everyone will succeed.  My confidence in this regard is strongest with Willy, who (currently) is the least limited by his disabilities.  Because Willy is recognized by influential members of society (currently consisting of teachers and other school staff) as being capable, his disabilities are not used to limit his potential.  He’s “allowed” to pursue his interests.  Whereas Alex is limited by his disabilities.  Despite my best efforts, Alex’s capabilities tend to go unrecognized by those influential members of society; his future is seen as being limited by the services and supports that are provided to people with his disabilities.

I look to a future in which my boys—all four of them—can pursue their art as a vocation, as a career.  I look to a future in which Alex, especially Alex, is provided the services and supports he needs to pursue the career he wants for himself, not limited to the work tract that is expected and available to someone with his disabilities.  I’m still not sure how to bring that future to fruition, but I’m determined to make it possible.

The Art of Autism

And that’s one reason why, when I recently came across The Art of Autism via LinkedIn, I took an interest in the work they’re doing.  I’m already a fan of The Autism Acceptance Project.  I know it’s possible, and I know I’m not the only one who sees potential, instead of limitations.