You are currently browsing the archives for September 2010

(And the real prize is…)

  • Posted on September 27, 2010 at 6:08 AM

The Versatile Blogger award

The Versatile Blogger award

Kathleen of autismherd has graciously recognized me for The Versatile Blogger award.  She was recognized by the blogger at Big Daddy Autism, who was recognized by a blogger at Floortime lite mama.  In order to accept the award, I have to tell you seven things about myself that you don’t already know.  Then, I have to pass this on to seven bloggers that I think are great.

First, the seven (random) things you don’t already know about me:

1) Inside a plastic box is a print-out of the first novel I ever wrote.  I set it aside after Ben was born, because I couldn’t make it work.  Now, as I’m learning more about how to go about revising a novel in preparation for finishing my second novel (with my writing partner, Angel) I’m considering trying once again to make that first novel into something publishable.

2) This is the first year since I’ve legally become an adult that nobody has said, “You’re only [insert age]!”  At 30 years old (31 next month), I think I’m finally old enough to stop surprising people with how young I am.  I’m not really sure why my age has been such a surprise, but it seems my age has caught up with people’s impressions of me.

3) I have started drinking Java Monster’s Loca Moca in preference to any other coffee beverage.  This is an expensive habit, but I don’t get caffeine headaches anymore, so it’s worth it.

4) I prefer my music to be arranged in an order that tells a story.  I create playlists using songs as plot points or moments of character development and tell myself stories that I have no interest in writing in actual words. 

5) I will be getting my very first cell phone in the near future.  I am not a Luddite, but I feel no urge to have a piece of technology I don’t need.  Since I am driving two hours once a week to attend my classes (and then two hours back), it’s been decided that I require a cell phone.

6) I lived on the east coast for a while and became rather spoiled regarding seafood.  I especially like lobster, shrimp, and crab.  Now I live in Wisconsin and you just can’t get good, fresh seafood out here without paying an arm and a leg—or at least getting a second mortgage.  Someday I hope to make it back out east, just for the seafood.

7) My favorite bed was made by grandfather.  He made the wood posts and attached a canopy railing around it, while my mother sewed a yellow canopy to go on top of it.  I loved that bed!  Now I sleep in a much bigger bed and don’t even have a headboard let alone a canopy.  Though, if I had a canopy now it would be purple, not yellow.

Now something you probably do know about me (which ties into the title):  I have to say the real reward for this award is discovering new blogs!  I’ll be picking through all the links to add these new treasures to my lists.

Finally, seven blogs I think are great:

To Get to the Other Side by Estee

Whitterer on Autism by Maddy

Brilliant Mind, Broken Body by Kali

Aspitude! by Elesia

Aspie Rhetor by Melanie

Life with Aspergers by Gavin

And Comet’s Corner by Clay, even though he’s pretty much done with it.

Now, I have some links to check out!

Highlight It

16 Comments on (And the real prize is…)

Should We Label Characters?

  • Posted on September 25, 2010 at 12:09 AM

I recently watched A Wrinkle in Time, a movie based on Madeleine L’Engle’s book of the same name.  Watching this movie brought back memories of my childhood, when I fell in love with L’Engle’s characters.  I remember finding in Meg a character sufficiently off-beat and unsure that I could truly identify with her—yet also courageous and powerful enough that I could look up to her and aspire to do what she did.  It was something of a pivotal moment for me, realizing that however different I seemed from my peers there was someone, somewhere who understood well enough to create a character that resonated so perfectly with me.

Don’t get me wrong.  I love stories and I delve into them heart and soul.  I loved reading about the adventures of Lucy and her siblings in the Chronicles of Narnia or Bilbo and Frodo in The Lord of the Rings, among many, many others.  I live and breathe these stories with a sense of reality that sometimes intrudes on the real world.  These stories are why I became a writer.  I hope to write stories that captivate people in a similar way, providing them with an enriching escape that helps them return to the real world better people for the experience of it.

But as much as I would attach myself to these characters I didn’t identify with them the way I identified with Meg.  I’ve read hundreds of books and seen hundreds of movies.  I’ve watched a few television shows in their entireties.  Often this is a form of escape—not so much to get away from my life, but to get away from my sense of reality.  But in all these stories there are so few that resonate with me the way Madeleine L’Engle’s stories have done. 

So many characters seemed just a little too connected with their world—whatever world that happened to be.  Even the outsiders (God, I love outsiders!) fit in just a little too well.  But then there’s Meg.  She doesn’t fit.  Even when, as an adult, she merges, she doesn’t really fit.  She’s different.  And, at first, she’s uncomfortable being different.  But she grows into herself, into her differences.  That’s something I could identify with and aspire to long before I had any clue of the nature of my differences.

There’s a temptation among some people I admire to attribute neurotypes to characters and historical persons.  As much as I respect their desire to do so, I think that such labels may be a little bit misguided.  In the past, I’ve watched Bones and saw how Aspie-ish Dr. Brennan is.  And maybe she is.  Maybe, whether her creator intended it or not, Dr. Brennan could be labeled an Aspie.  Maybe, whether L’Engle intended it or not, Meg could be labeled an Aspie.  Charles Wallace certainly has some rather pronounced traits that suggest an autism spectrum neurotype.

As tempting as using such labels is, I feel that maybe we should resist the temptation.  Maybe the label is not the point.  Maybe it’s not necessary.

Human diversity is a vast thing that encapsulates each and every one of us.  Neurological diversity is a vast thing that encapsulates each and every one of us.  While our cultures and societies may try to cut diversities up into segments—some being desirable and valued and others being unfortunate and unworthy—diversity doesn’t really work that way.

Characters like Meg and Dr. Brennan help their audiences see that people really are different, and that those differences can be a source of a character’s strengths even as they represent weaknesses.  Balancing strengths and weaknesses is actually something of a rule in writing, because it more accurately reflects human nature than flawless characters or pure villains do.

And maybe that’s enough.  Maybe it’s enough that we recognize that people—and the characters patterned after people—are different, each and every one of us.  Maybe we don’t need a label to summarize those differences so much as we need a willingness to attach ourselves to the others that surround us.

Highlight It

6 Comments on Should We Label Characters?

Almost Okay

  • Posted on September 20, 2010 at 12:29 PM

Some things in life take on a feeling of regularity, despite their seeming abnormality.  For me, depression is one of those things.  As the clock strikes midnight on January 1st each and every year, I know I will experience four or five bouts of depression in the coming twelve months.  As abnormal as this may or may not be in the grand scheme of human living, it is normal for me. 

It is expected.  Knowing that it is expected makes it slightly, but only slightly, more endurable.

Also expected is the journey of depression itself.  It starts with resistance.  “I won’t let it happen again.”  “I’m going to power through and I’ll be fine.”  Or maybe even denial.  “I’m not heading into a depressive episode.”  “I’m not slowing down.  I’m not losing track of my own thoughts.”  “I am motivated.  I’m still working!”

Then, I reach the point where denial is no longer possible.  I’m stopped.  Like a sudden halt in the stampede of life, I’m thrown from the saddle and I find myself sitting in the dust—stunned.  Or, more accurately, I find myself sleeping for ten or twelve hours—when I usually subsist on six hours a day.  I find myself watching television or reading obsessively.  Episode after episode; book after book.  Anything to avoid dealing with the things on my to-do lists—the things of my life.

After wallowing in depression for a few weeks or a month, I drag myself out.  I force myself to be productive.  I move.  I work.  I get things done.  Slowly—so slowly—I climb from the depths of depression back onto the track of daily living.  I travel this path for a few months, then I fall again.

My depression is cyclic.  I know I will be depressed, but the times of depression are not themselves predictable.

Sometimes, however, there are hiccups in this cyclic process.  For example, illness can trigger depression for me.  At this stage of my life, productivity has taken a consuming, looming presence in my life.  There’s much to be done, and me to do it.  So, when I get sick, I become unproductive.  When I’m unproductive, my brain tricks itself into being depressed—after all, depression = unproductivity, therefore (logic assumes) unproductivity = depression.

I become sick.  Days pass by unproductively.  I feel depressed because I’m unproductive.  I feel worse because I’m sick.

I estimate that two or three of my depressive episodes each year are triggered this way.  I don’t start out by slipping into depression and unproductivity.  I start out unproductive and trick myself into depression.

Now, I’m trying to learn to trick myself out of it.  The past two weeks I’ve been struggling with illness, and thus with unproductivity and depression.  The reason I’ve been in bed is because of illness, but being in bed and watching the days slip by with so little getting done makes me depressed.  But being depressed keeps me in bed and ensures more days pass by with little getting done, even though my body is strong enough to start doing things again.

So, I do things.  I get things done.  I check things off.  And I try to feel undepressed.  Sometimes it feels like this strategy is working.  Then, I remember that I’m still doing things that should have been done last week.  And a little more time slips by.

Highlight It

2 Comments on Almost Okay

Looking to the Future

  • Posted on September 13, 2010 at 7:43 AM

As much attention as I place on my own academic progress, it’s not hard to imagine that I want my children to have the opportunity to go to college or to pursue whatever other vocational and educational advancements they may choose for themselves.

 Right now, Willy’s artistic abilities along with his interest in space and his eye for dimensions make architecture a promising field for him to pursue.  He also wants to make movies someday.  Alex’s interests tend to lean more towards drawing and manipulating letters, so his horizon is full of its own artistic potential, whether it is as a visual artist or a writer.  Whereas, Ben tends to lean more towards drama—he’s a showman and loves reciting stories. 

Any and all of these interests could be furthered with advanced training.  Some careers in these areas require college degrees.  Others could be pursued professionally without a degree, but training is still required.

Yet sometimes it seems like these opportunities will be outside my boys’ reach.  Will seems the most likely to go to college, because he is, thus far, the most of adaptive of my boys.  But even finding an art teacher who can communicate artistic techniques in a way Alex can understand and duplicate seems unattainable, let alone engaging in the kind of study many artists find invaluable when developing their craft.

Now there seems to be a bright spot on the horizon.  Recent articles have drawn my attention to the possibility that, perhaps, our society is ready to adapt better to the needs of our special students sufficiently well to give my children the opportunities they deserve.

For example, Lessons on Living with Autism is an article that, while pretentiously named, discusses a “College Internship Program” that prepares students with “high-functioning autism and Asperger’s disorder” for a better collegiate experience.

Some things in this article I find disagreeable.  Others seem very promising.  It’s too soon to know whether such a program can gain the kind of widespread support it needs to be both a success and widely accessible.  I would also like to see if it can be expanded to include as many autistics as want to participate—instead of singling out those regarded as “high-functioning”. 

It’s a step in the right direction that makes me just a little bit more at ease regarding the opportunities that will be available to my children.

Highlight It

3 Comments on Looking to the Future

Unmet Needs

  • Posted on September 10, 2010 at 4:57 PM

If I have a problem—an unmet need—surrounding the act of parenting my children with autism, there are many sources I can go to resolve my problem.  Because of tight budgets and inadequate levels of service, there is no guarantee that my problem will be solved—even if the problem is a major need that has a significant impact on my family’s quality of life.  However, there are many people and organizations that will try to assist me.

I have a voice.  And I’ve found those willing to listen.  This is a good thing.  But, it is also a problem in and of itself.

I have a voice.  People listen to me. 

My children are not so enabled.

The purpose of this post is not to say that society has no obligation to provide for the needs of parents of children with special needs.  Nor is it to say that those needs are not important.  Children need their parents, and their parents’ needs must be met in order to care for their children.  For many families, respite is, quite literally, a life saver.  And that’s just one example.

However, I believe our society needs, above all, a shift in focus.  This is big statement that includes parents in general, not just parents of children with special needs or parents of children with autism.  I have grown up in a very selfish age.  Some books I’ve read as a business student cited the 1980’s as a significant shift in focus.  Parents who grew up with relatively little found they had an abundance, and they did not want their children to go without anything they desired.  Marketers and businesses encouraged this, and the resulting sales fed some of the economic booms over the last few decades.  When the abundance was not available, people assumed debts to feed their unquenchable desires—and that led, at least in part, to the recent economic crash.  It also created spoiled children that grew into spoiled adults.  Those adults are now parenting today’s children—and they (the adults) are still spoiled, selfish, self-absorbed people.

This is not an accusation against individuals.  It’s a societal trend—specific to, but probably not exclusive to, the United States.

This trend is in-grained into our society—fed by marketers, service providers, businesses, and non-profit organizations—that it pervades just about every facet of our lives.  Sure, there are individuals who have not succumbed to this culture.  But the cultural shift is so huge it’s hardly recognizable—like trying to identify an elephant under a microscope.

Our children are those who, above all, must pay the cost of this culture.  From liberated women to liberated men, we have families pulled apart by selfishness and self-absorption.  And society as a whole caters to this self-involvement—supplies must match demands or the supplies sit unused.  It’s an economic law.  The demand created by those with the power—that’s us, the adults—is based on this self-indulgent culture.

I remember (when I was still in junior high) reading about some of the social justice movements of the times.  An oft-repeated slogan was:  “What about the children?”  This slogan was used for all sorts of things when I was growing up.  From environmental issues to the idea of nuclear war, from organizations determined to equalize the racial divides to charities designed to raise funds for the impoverished countries of the world.  “What about the children?  Think about the children!”

But the children grew up.  And now, for so many social justice movements, the call is “What about me?”

It’s a huge shift that affects so many parts of our culture.  The impact is devastating.  Sure, some social justice movements have profited a great deal from the focus.  Green is huge at least in part because the privileged middle-class use being green as a social stepping stone to being worthy of notice.  Gay rights movements have flourished, at least relatively speaking, because of the “What about me?” focus.  The neurodiversity movement exists, at least in part, because of the “What about me?” focus.

But so much of life isn’t about me.  And it isn’t about you.  It’s about the children.

There are many programs that have “helping individuals with autism” as their goal, and those programs should focus on those individuals with autism.  First and foremost.  The needs of their families are a secondary consideration, but a consideration nonetheless.  But that is not what we have today.  Programs focus on the parents:  either directly meeting the needs of the parents or meeting the needs of the children as those needs are expressed by the parents. 

Whether I’m talking to a doctor, to a teacher, or to a social worker, I often have to fight to get them to focus on my children’s needs.  I can tell them some of what those needs are, but these observations are always going to be filtered through my own perceptions and my own understanding.  There’s so much I don’t know.  And, try as hard as I do to learn, there’s so much I will never know.  That’s why we have specialists.  Unfortunately, parents often encounter so-called specialists who devalue their children; thus, parents have insisted in having more of a say, in order to advocate for their children’s well-being.  But the self-absorption and self-indulgence of our culture is very seductive and many parents focus on the wrong things—things that have more to do with themselves than their children.

My children need those specialists to take a step back from me, my needs, and my perceptions.  They need to see my children’s needs as independent from my own.  And they need to help me better meet my children’s needs.  Often, meeting the needs of my children alleviates needs I had because of my children’s unmet needs.  But, the reverse is not true quite as often.

For example, Ben is staying up late into the night.  Tuesday it was until after 11pm.  Wednesday it was after midnight before he fell asleep.  Thursday it was 11:30 pm.  Now, if I were to express my need, I might say something like, “I need a respite worker to sit up with Ben so I can get some work done.”  From a purely selfish perspective, that is what I need.  Meeting my need would not help Ben, who needs more sleep, get his needs met.  But at least my need would be met.  But wait.  What if we could meet Ben’s need?  (Yes, we tried that with the melatonin, but obviously that’s not working so well any more.)  If Ben got to sleep at a reasonable time, my need would be met and so would his.

It’s a shift in focus.  And that shift is an unmet need for our whole society.

Highlight It

5 Comments on Unmet Needs

Not Passing

  • Posted on September 7, 2010 at 6:50 PM

Earlier this year, I finished up four years of college in pursuit of a bachelor’s degree.  It was a great accomplishment for me, but it also thrust me into uncomfortable territory.  During those four years, I went to campus once—and that was just to take the test to get in.  Even my graduation ceremony was held off campus.  All my classes were online.

But graduate school will be different.  In order to get the graduate degree I want, I will have to take most (perhaps all) of my classes in person, on campus, amongst my fellow students.  Yes, that’s right.  I will actually leave the comfort of my own home and go out amongst strangers.

Now, I’m not sure how aptly “passing” applies to my situation.  As I’ve said before and will undoubtedly say again, I have no diagnosis of autism and, unless the medical services structure catches up, I’ll probably never be evaluated for a diagnosis—as things are now an adult diagnosis simply requires too much effort.  So, I’m not deemed to be on the autism spectrum.  However, I’m not neurotypical either.  Along with a history of mental health issues (depression and anxiety, mostly), I experience sensory stimuli differently from most people—something I was only able to figure out after my children were diagnosed with autism and sensory integration disorder.  Since I have figured it out, I’ve been able to consciously develop coping mechanisms.  I’ve thrown off the shackles of not-coping and use the coping mechanisms that allow me to be who I am without being overwhelmed, at least when I’m at home.

But what should I do about graduate school?  On the one hand, part of the purpose of attending a written communications program and getting a graduate degree in writing is to participate in the writing community.  You meet people who write and that helps improve your craft and also improves your long-term chances of a making a living writing by finding people who take an interest in your work.  That’s the idea anyway.  Fitting in (thus blending in) has something to do with that—not that I’ve ever understood what that really means or how one really goes about it, but it seems to be how our society works. 

On the other hand, my odd-seeming coping mechanisms help me concentrate.  They help me focus my mind on what I’m listening to instead of being distracted by the background sounds or the sensations of my own body.  Strange places can be very distracting with their white noises that aren’t my white noises.  If I can’t cope, then I can’t concentrate, and if I can’t concentrate, then I can’t learn—so what’s the point?

Besides, I’m more or less comfortable being who I am, so why should I hide that when part of being who I am makes me the writer that I am?

So, I made a conscious decision not to pass.  My first day in class, I took off my sandals and sat in my chair with my legs folded under me.  I got a few, brief looks, but that was about it.  I organized myself using a few different strategies that work for me.  People noticed, but nobody seemed to care.  I thought to myself that I’d be okay as long as nothing major happened.

Then, one day, I was talking with one of my peers when there was a malfunction with the multi-media equipment.  The equipment emitted a loud, long, high-pitched whir.  Everyone was annoyed.  I was beyond annoyed.  This was a sound I could not tolerate.  The sound crashed into my head and shattered every single thought like glass.  The shards of glass cut into my brain.  And everything hurt.  The sound was physically painful—not just to my head, but to my whole body.  It cut and cut and cut into me.  And when everything was cut to pieces, the sound cut the pieces to pieces.

I covered my ears just like I’ve seen my boys do so many times and I cowered in on myself.  I squeezed my eyes shut as if I could squeeze out the sound.  It seemed the whole world disappeared, except for the sound and my need to block it out.  But it still made its way into my head—weaker now with my hands over my ears—and it still hurt.  I don’t know if I made a counter-sound to try to drown it out.  I might have, but I don’t know.  I couldn’t think.  I couldn’t plan.  I couldn’t strategize.  For those long, drawn out moments, the rest of the world was just gone.  It was like my entire nervous system was in melt down mode.

And then, after several minutes, the sound stopped.  Nobody stared.  Nobody did anything.  The peer I was talking to simply resumed our conversation where we’d left off when the sound started.  However weird my behavior may have seemed, I was accepted just as I was.  No snide comments.  No put-downs.  No weird looks.  I was just accepted.

Maybe it’s that I’d already talked about my kids by then.  Maybe it’s that my peers are, for the most part, older than your average college student.  (The median age at my school is 38.)  Maybe it’s that one of my peers worked with kids on the spectrum and another is a psychology professor.  I don’t know.  But I’m not worried about whether I made the right decision in not passing any more.  I’m much more concerned about making an effort to be social—but that’s a whole different thing.

Highlight It

2 Comments on Not Passing

Melatonin Update

  • Posted on September 2, 2010 at 9:04 AM

So, we’ve had the liquid form melatonin for just about a week—long enough for the boys to have gotten used to it.  The delivery arrived just in time to get them on the sleep schedule they need to be ready to start school.

I am very impressed with the results.  The boys are calming down and sleeping much better at night.  Not only that, but—after only a few days of taking melatonin—they are ready for bed at an appropriate time.  I give them each a dose of melatonin, and by the time I’m ready to put them to bed—about twenty to thirty minutes later—they are going upstairs nicely and climbing eagerly into bed.  This is a fabulous change, since I used to have to herd the boys up the stairs—sometimes carrying one or both of the little ones—and then wrestle them into bed.  And still they wouldn’t stay there, so I’d camp out between their rooms for an hour or three until they finally fell asleep.  Melatonin has changed that!  Last night Ben was even curled up and drowsing on one of the downstairs couches before it was even time for bed—though I think that might be because he’s fighting off his first cold of the season.

Melatonin has been a great relief.  Not only does it work once the boys are actually dosed, the dosing is much easier than I expected.  The liquid form can be diluted in a small bit of milk or other beverage—Ben prefers Dr. Pepper over milk, silly guy that he is—and they drink it with little resistance, though it does require monitoring.  Willy is actually excited to take it and wants to make sure he gets to help with the dropper!

The only downside is that it doesn’t seem to carry over in the sense that it creates a sleep habit.  At least, it doesn’t help me to create a sleep habit.  I took melatonin two days in a row and was on a regular sleep schedule—going to bed at night and waking up in the morning.  Then, I didn’t take it two nights in a row and just kept going and going like I usually do.  Luckily, when I took melatonin last night, it helped me sleep and I woke up fine in the morning.  So, it works—it just doesn’t create a sleep habit that allows me to maintain a schedule without it.  At least not after two days of use.  So, I have to be sure we have a steady supply of melatonin for each week.

Overall, I’m impressed.  I appreciate the benefits to my family and hopes it keeps working this well over the long haul.  I’m glad I tried it.  I still retain my skepticism regarding the popularity of experimenting on children using various over-the-counter remedies.  But I also think that when a problem gets severe enough, trying remedies used by a large network of trustworthy individuals is an appropriate step.  The bottom-line, for me, is to remember that all these drugs on the market are, above all else, powerful and incompletely understood.  It’s not something to play around with “just in case it works.”  But taking a cautious, rational approach can allow us skeptics to make use of these drugs, while still preserving the long-term welfare of our children.

Highlight It

7 Comments on Melatonin Update