Let It Begin! Let It Begin!

As stated in my last post, today marks the start of NaNoWriMo, an attempt to produce a 50,000 word (at least) story by the end of November.  I went back and forth on which book I wanted to write, and I finally settled on 7 Days (working title), a recount of the week I spent with my autistic daughter, Natalie, while my then soon-to-be ex-wife Norma went up to baby-proof the home they were moving to, across the state.  It was a particularly difficult period of my life, as I was trying to adjust to the concept of living without my daughter on a day-to-day basis, while struggling with trying to take care of her by myself for such a long period of time, something no one else had ever attempted.  That being said, despite it being about divorce and feeling alone, I find a lot of humor in the events surrounding my life, and I hope others can as well.

I had several other stories I was interested in doing (in fact, I thought about writing the first chapter or two of several books, but I read the rules and saw that wasn’t acceptable).  My fear in writing this particular story was that I would get too bogged down in bitter feelings and negativity, or that I wouldn’t be successful at writing about my own life, but I figured what’s the harm?  Even if this story doesn’t pan out and it’s one I want to keep to myself, I’m only losing a month.  And perhaps writing it will prove to be cathartic, as the divorce has only been final for a few weeks.

Either way, at this point, I’m all in.  I don’t want to lose a day of writing by restarting, so I’m going to forget ahead with what I have.

By the way, in order to achieve my goal of 50,000 words, I have to write 1667 words per day.  Today, I clocked in 1709.  Just barely squeaked by!

Thanks for reading,

S.L. Madden

A Touching Moment

Earlier tonight, Natalie caught me in the cheek with the corner of an envelope, in that spastic way she has when she’s not paying attention to her surroundings. Sometimes it’s an elbow to the face, or a foot to the groin. Tonight, it was an envelope to the cheek.

Almost instinctually, I said, “Ow, baby, that hurt.” It didn’t–not really–but I usually say that when she does something that could cause others pain. I know deep down it’s a lost cause as she continues to be the sole center if her universe, but still I try.

Only, tonight, after I said those words I so often say, she turned to me and ever-so gently stroked my cheek where she’d gotten me. Then she went back to watching Cloudy With A Chance of Meatballs on her Kindle Fire.

I was stunned. I had no idea she was aware she’d hit me, never mind where . For a moment I thought perhaps I’d received a papercut and was bleeding, or it’d left some kind if a mark. Something that let her know what she’d done by looking at me after I’d spoken.

There was nothing, leading me to conclude she had heard my words and responded with empathy. In her non-verbal way, she had said, “I’m sorry.”

Perhaps she’s more aware of her surroundings than I give her credit for.

S.L. Madden

PS. Wanna hear something else touching? This is the first post I’ve written entirely with the touch screen on my phone. So maybe now you’ll forgive all the blatant typos. 🙂

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The Missing

This blog entry is brought to you by the letters B&E and the number 911.

It’s been awhile since this happened, but I think I’m just getting to the point where I can write about it.

For a period of about 30 minutes, Natalie disappeared.

I came home from work and used the restroom while Nat went outside.  A few minutes later, Norma pounded on the door, saying Nat was no longer in the yard.

Our first assumption was she had made it into the neighbor’s yard behind us.  This seemed obvious because the fence dividing our properties was down, making it easy for her to get over there.  I peeked over the fence and called out for her.  I didn’t see her anywhere and when she didn’t answer (not surprisingly), I decided to run around the block and ask the neighbor if they’d seen her.

Fairly spooked and definitely winded (that was my first run since I hurt my hip and any thoughts I had that I was over my injury were disproved with a vengeance), I pounded on their door and rang the bell.  No one answered.  Frustrated, I opened the gate and went into their backyard, telling myself that had to be where she was.  Very much aware of the fact I was trespassing, I looked all over the yard, holding my hands in the air in case they were the “shoot first, ask questions later” type.  I didn’t see her anywhere.

I tried to look in through their sliding glass door, but it struck me the doors were shut and that was something Natalie just wouldn’t do.  Besides, I saw no movement inside.

Now thoroughly scared, I wondered where she could have possibly gotten to.  Their yard still seemed the most logical place due to the fallen fence, but if she had a mind to escape, there were other ways out.  It occurred to me she might be at the park in the neighborhood, but as I started to make my way there, I realized she would have no way of knowing where to go (we always made it a point to drive different ways to get her there, just in case she got it in her head to get out the door and walk there).

Frantic, I went home and searched through the garage and the entire house, just in case she slipped back in while we were distracted.  We checked under the deck, in the surrounding shrubs, everywhere we could think.  Our next door neighbors offered to assist and while Norma ran over to the park, I called 911.

I was almost off the phone with them when I heard my neighbor announce they found her.

She was inside the neighbor’s house, the one with the sliding glass doors I was convinced Nat would never shut behind herself.

I made my way into their yard again, stepping over the fallen fence, all too aware of the fact I was trespassing while on the phone with the police.  Sure enough, she was standing at their sink.

I pounded on the glass door, still on the phone with 911.  She looked up at me, but in classic Natalie fashion, she kept at what she was doing.  I hastily thanked the dispatcher, apologized and hung up, even as I made my way into my neighbor’s house.

The first thing that struck me was it sounded like someone was home.  Music blared from downstairs and two pans of homemade pizzas sat on the counter.  Natalie looked up at me and casually turned and started walking up their stairs.

I grabbed her arm and led her to our yard, both furious and elated at the same time.  She was completely oblivious to what she’d done.  The neighbor who had helped us look for her grabbed some tools and put a sort of metal band-aid on the fence to keep it from falling for now.  While he was working on it, Nat went over and tried to push it down again.  Right in front of us!

Have I mentioned how much I love my daughter?

I went back over later that night to explain what had happened to the neighbors, as I could only imagine their horror when they saw whatever damage Nat had wrought (I didn’t look around when I was in their house).  Even though their lights were on and the dog was barking (thank goodness he hadn’t gotten ahold of Nat), nobody answered.

The next morning we finally made contact with the neighbors, providing a good deal of relief.  The man of the house thought it was just kids messing around, but the lady of the house was convinced it was something more sinister.  Apparently Natalie had broken eggs into several containers and mixed them up with different sauces (explains why she smelled odd after we brought her home).  The lady was convinced it was someone trying to send her a message.

“I know where you live and I can make my way in whenever I want.”

This was reinforced by the fact the people who broke in didn’t steal anything.  They didn’t even try to eat a piece of pizza (which surprised me, as I thought Nat might have gone for it).  We explained she’s been watching Elmo’s World where they talk about making cakes, and she’s rather obsessed with eggs.  We all laughed about it and moved on, with them telling us they’d keep an eye out for her and would probably lock their back door from now on.  According to them, they had left the house just a few minutes before Nat had made her way there.  Also, the dog was in the house, but somehow, the two didn’t cross paths.

For nearly giving us a heart attack, we were quite lucky.

I believe the ordeal made an impact on not only us, but our neighbors as well.  They stopped by the other day to talk to us about Autism, what it is and various things they’d researched.  They had their dog with them, and it growled and barked when it saw Nat.  So far, the fence has held up and I went around the perimeter in an attempt to prevent her from ever escaping again.

She may have only been gone for 30 minutes, but it was long enough for me to never want to experience it again.

 

S.L. Madden

 

If I Can Do It….

As many of you know, I am knee-deep in NaNoWriMo now.  No, it’s not a potentially contagious disease (although my mother has contracted NaNo fever this year and is working on a brand new fantasy).  It’s where writers and wanna-be’s the world over decide to dedicate their time and sanity toward writing at least 50,000 words of a new novel.  It may seem a lofty goal, but it averages out to 1667 words per day, assuming you write each day in November.

I have tried–and failed–three times before this.  Each time, I went in with gusto, convinced I’d come out with a workable rough copy.  And each time, a few weeks in, I thought, Eh, maybe I should be working on something else instead.

Not this year.

My pedal is fully to the metal, so to speak, and I really have no doubt I will meet the 50K goal.  In fact, I’m so confident, I’m raising my personal goal to 80K, or whatever it takes to write the words The End, by November 30th.  Granted, I’ll spend the next several weeks (months?) in rewrite and edit hell, but I’ll have something to work off, instead of having these ideas and characters trapped in my head.

Despite my bravado, it is daunting.  Writing a book–even a rough draft–in a month is a lot to take on.  And I can understand why some may shy from participating.  Whatever their excuse, however (barring any unforeseen natural disasters or family tragedies), I believe every single person who has the will and drive can make it happen.

I know some of you are in school, with classes and homework taking up a large part of your day.  Others work full-time, and by the time you’re done, your energy is depleted.  I understand all of these things.  I work full-time, leaving for work at 0845 and often getting home around 7 or 7:30 at night.  And when I do get home, I have an Autistic six-year-old to watch.  Why point out the fact she’s Autistic?  Because as time-consuming as kids are, my daughter is especially so.  I can’t don my headphones and get to typing for fear of her getting into something (which she will; she has no qualms taking advantage when we let our guards down).

The need to constantly be up and down, trying to keep an eye on her, isn’t very conducive to writing.  So I’ve had to devise some workarounds.  I get up early in the morning, about an hour to an hour and a half before I need to, for the sole purpose of writing.  Yes, I’m tired and more than likely shaving years off my life, but I’ve gotten a lot accomplished in this time without taking time away from my family (just those last few years of my life that really weren’t going to be all that high quality anyway).  Then, when I’m done, I email it to myself at work, so that I can continue writing during my lunch break.  That gives me about another 45 minutes to an hour, depending on how much time I have to spend eating.

This practice has allowed me to stay ahead of the curve this NaNo season, even though I missed out on a few days already.  If the need arose, I know my wife would allow me some time to write at night as well, but I truly try to not take up any time I could otherwise be spending with my family.

No, the one who is truly suffering here is my PS3, who sits up high on a shelf, watching me stumble down the hallway every morning.  I can practically hear its Cell processor thinking, Pick me.  Pick me.  Remember how much fun we have together?  We can have that again.  Just don’t go to the keyboard.  Pick up a controller.  Not the keyboard.  Not…Damn!

Don’t worry, PS3.  This isn’t forever.  Soon, NaNo will be a thing of the past (although I’ll be mentally preparing myself for next year).  Even with edits and rewrites, I’ll find a way to bring you back into my life.

Because not only am I a father, a husband, a full-time employee, a writer and, arguably, a generous lover…I’m also a gamer.  And if I can be all those things and still beat the 50K goal, anyone can.

S.L. Madden

(BTW, if there are any other fellow PS3 gamers out there, my gamer id is fractality820.  I could always use more friends.)

 

Fire + Water

As avid readers of this blog may recall, we purchased a Kindle Fire for my autistic daughter some time back, shortly after the device was released.  She’d been using and prospering with an iPad at school, but being an Amazon supporter (yay, Kindle!) and poor, I opted for the much-nicer-to-my-checkbook Fire.

Aside from a short period where she absolutely refused to use it without any sort of explanation, the Kindle Fire has been her best friend.  She uses it to solve puzzles, play games and even accesses YouTube when she wants to watch a particular clip.  It’s become a regular enforcer in our home, a means of learning, entertainment and a reward.  So, you can imagine my horror when she got water into it.

Taking advantage of a situation in a way I’m convinced only my daughter can do, she slipped out the backdoor while my wife was indisposed.  And since this occurred in summer, she decided, why not turn on the hose and flood the grass?  It was at this point, she set down her Kindle Fire, her friend, and ran off to play.

When I got home, my wife was understandably upset.  I knew something was wrong right away.  The last time I’d seen her like that, it was to tell me Natalie had dropped my beloved PS3 off the top of a bookshelf (don’t worry, it still lives to this day).

I wasn’t nearly as mad as I would think I would be (if I had to take a survey on how I would respond, I would have totally gotten it wrong).  Fearful the device was dead, we plugged it in to see if it worked.  The loading screen came on…and that was it.  It never got past that initial Kindle Fire screen.  Frantic, I jumped online to see if anybody else had any experience with this kind of craziness.  Turns out, we weren’t the only ones.

The first thing I read was, “Don’t plug it in.  Get the water out first, or you risk ruining the battery.”

Crap.

We unplugged it and looked at one another, knowing what had to be done.

A half hour later, I returned from the store, a brand new Kindle Fire in my possession.

I know, I know…it does nothing to teach her responsiblity, that there are penalties for her actions.  Unfortunately, she doesn’t understand these things and until we can communicate better with her, she would never make the connection.  There is no cause to the effect for her.  Or maybe I’m just rationalizing it because she was already incessantly saying, “Kindle, please.  I want Kindle, please.”

So, we got her a new one and loaded it up with the apps she used most from the old one.  For those of you who have one and are looking at getting another, Amazon makes it amazingly easy to transfer your apps over.  In a short time, it was fully loaded and the damaged unit went into the cupboard.  Oh, and this time, I bought a replacement plan for the new one, just in case.

A few days later, out of curiosity, I plugged the damaged unit in.

It turned on.

The battery only lasted for a few minutes, but it had power.  And from what I could tell, it worked fine.

More internet browsing revealed a good way to get water out of a device is to stick it in a bag of rice.  Even a co-worker confirmed this by saying he resuscitated a water-logged iPod.  So, I bought a cheap bag of white rice (no need for Jasmin or organic brown rice here) and stuck it in.  The next day, we pulled it out, and after knocking some rice out of the headphone plug, booted it up.

Eureka!

So, now we had two fully functioning Kindles.  I gave the new one to Natalie and took the old one to work with me to listen to MP3’s on, but it still troubled us we just paid $200 for a device we didn’t really need.  My wife called the store and they said they’d take the new one back if we still had the receipt.  So it was with some reluctance I wiped the new Kindle (Natalie seemed to prefer the old one, anyway, for some reason) and we prepared to return it.

The next day, my wife showed up to pick me up from work, the new Kindle in tow so we could return it on the way home.  Only, she also had the old Kindle and a concerned look on her face.

“It’s not working.”

For some reason, the old Kindle was stuck on the boot screen again.  Determined, I got it to reset and turned it back on.  It cleared the boot screen and went to the screen where you have to drag your finger across the screen to get to the carousel.  The touch feature didn’t work.

I tried several locations on the screen, but we were locked out.  Defeated, we returned home with both Kindles and again reinstalled her apps on the new device, while trying to figure out what we were going to do with the defective one.

The next day, it worked once more.

My wife and I discussed returning the new Kindle, but we were worried about the old one giving out again.  We watched it for several days, letting my daughter use it as she normally would.  It seemed strong as ever and, satisfied, we once again wiped the new unit and this time, returned it to the store.

This was several weeks ago, and though I still fear the Kindle giving out on us, it hasn’t disappointed.

Recently, a new version of the Kindle Fire was released and we’re contemplating picking one up and keeping the old unit for ourselves (we deserve toys too, don’t we?).  I hope they’re made as durable as the old model, because my daughter still doesn’t understand the concept of cause and effect.

S.L. Madden
Shop Amazon’s New Kindle Fire

How I Played With Fire (And Didn’t Get Burned)

A few weeks back, we had our first meeting with my daughter, Natalie’s, new teacher.  After two years of Preschool, Natalie started Kindergarten this year at a different school.  Because she’s Autistic and needs to be watched, she’s in a structured classroom, with other children grades K-2nd, who also have special needs.  This meeting, her IEP, is designed to set her goals for the year.

My wife and I panicked when we saw the meeting was going to take place in the conference room rather than her classroom.  She was used to the classroom, knew the toys and what she could and couldn’t get into to.  Even though I knew I’d still have to keep a close eye on her while my wife talked to the teachers, the classroom was a safer bet.  What was there to amuse her for an hour plus in the conference room?

When her teacher came up and said, “Let me grab my iPad for Natalie,” my wife and I looked at each other like she was crazy.  She did just say iPad, right?  That technological marvel (well, from my outdated standpoint), that costs at least $499  new?  We almost warned her against it.  Natalie loved electronics, but she also likes to destroy things to see what makes them work.  If we could afford to replace the iPad, we’d have one for ourselves.

Instead, we watched with trepidation as she handed it over to Natalie.  We didn’t know it at the time, but the teacher allows the kids to use the iPad as a sort of reward after completing their tasks.  As the meeting went on, I couldn’t help but watch as Natalie navigated the menus with ease.  I had read an article last year stating iPads were an ideal environment for Autistic people to explore, but I was still blown away.  She was able to go to the main screen, select the game she wanted (often times, puzzles) and perform them with no help.  At one point, I noticed everyone there was watching her work the system.  Even her teacher, who let her use it in the classroom, seemed amazed at how focused she was.  The meeting went close to an hour and a half and Natalie only got out of her seat once.

On the way back to the car, my wife and I both said the same thing.

We had to get an iPad.

Of course, as I said earlier, the iPad is a little out of our price range.  So, we started looking at our options.  There were cheaper tablets available, but the reviews on them were all over the place.  I looked at the possibility of getting a refurbished iPad, but it was still far more than we wanted to spend.  There were also a few tablets designed specifically for kids, namely the LeapPad and the InnoTab, but the games cost $25 or so (depending on where you purchased them) and they didn’t look anything like what Natalie was used to.  And even though they only cost $100, the price of the games would really add up.

But there was one other option: a Kindle Fire.

At $200, it’s still expensive, especially considering it’s for a five-year-old, but it’s much more doable than the iPad.  I’d been following news of the Fire since the story broke.  Despite many people comparing the iPad to the Fire, I had read just as many reviews stating that was like comparing apples to oranges.  We just wanted it for Natalie, so I set about scouring the app store to see if they had the same programs she’d been playing with at her IEP.

They did…sort of.

The puzzle games she was playing with were there, but I learned later they weren’t available yet for the Fire (they have since become available).  Also, she had a video that played Twinkle, Twinkle and had an animation of an owl.  I couldn’t find anything remotely like that on the app store.

Nonetheless, we took the plunge and bought the Kindle Fire, just before Thanksgiving (and thanks to a coupon, ended up getting our turkey free as a result…thanks Freddy’s!).  We beat the bus home and I raced to get it all set up before Natalie arrived.  Setting it to my WiFi connection was a snap and before I knew it, I was in the appstore, hurriedly looking for her snake puzzle.

When Natalie came home, she saw me with it in the kitchen and the first thing she said was, “Twinkle Twinkle.”

I offered a weak smile and my wife asked me to find a Twinkle Twinkle song, any version of it, to make her happy.  I ended up downloading one that didn’t have any animation (I didn’t realize it at the time).  Natalie didn’t much care for it, but that turned out to be a moot point.

The interface was new to her and the screen was a bit smaller than she was used to.  The first thing that threw her off (besides not having Twinkle Twinkle at her disposal) was the lack of a home button.  On the iPad, there was a button on the outside she could hit to bring her to the menu.  On the Fire, it’s a pull up menu on the touchscreen.  As a result, she kept hitting the only button that was available, which happened to be the power button.  Also, the default shelf screen is zoomed in, better suited to flipping through the apps than selecting them.  We had to show her how to hit the app button in order to more easily make a selection.

After that, it was like she was born to operate it.

She was already used to the puzzles, so that didn’t take much, but memory games were new for her.  We tried to play them with her before, but she would scatter the cards, toss them around, bend them, eat them…pretty much everything besides what she was supposed to do with them.  She didn’t have the option of being destructive with the cards on the screen.  At first, she kept selecting the same cards over and over, not sure what she was being asked to do.  Before long, though, it all clicked, and she was not only playing correctly, but she developed a method of finding the proper cards.  I quickly set about downloading as many matching and memory games as I could.

Some of the art programs are really good and others really frustrated her.  When she colors in a coloring book, she typically colors the whole page one color.  She tried to do the same thing with the programs, but some of them took too long.  The selectors were too small and she grew frustrated trying to color the screen.  I found one that was unique in that she could color the sky, for instance, but it wouldn’t color over the clouds in the sky, unless she picked her finger up and started coloring within the boundaries of the cloud.  She loves this program.  She still often colors it all one color, but she’s been experimenting with different colors, sometimes even switching up colors within the same picture.  Even though she can’t tell me, I’m pretty sure she’s becoming aware of the outlines surrounding each drawing as a result of working with the software.  It remains to be seen whether or not it’ll carry over to when she colors in her coloring books.

As a new owner of a tablet-like device, I had to check out a few of the games I’ve heard so much about.  I downloaded Fruit Ninja.  I figured Norma and I ought to have some fun with it, too.  After Norma showed Natalie how to do it once, she was hooked.  At first, she just touched the fruit, but she’s gotten much better.  She realized she has to draw a line through them and get as many as she can.  She still sometimes hits the bombs, but I think she does that on purpose.  She giggles whenever the screen goes white.

I also downloaded Angry Birds.  How could I not be part of the phenomena?  I checked it off very briefly after loading it and came to the conclusion it was a bit too complicated for Natalie.

Wrong again.

I came home the next day to find her launching the birds with ease.  She sometimes shot them backwards or aimed them at the ground, but she’s pulled off some astounding shots, toppling a whole building with a single bird.  And again, she knows how to navigate it so she can pick the level she wants, get in, get out.  I never would have imagined her being able to use a system so technologically advanced, given our restrictions with her being able to understand our instructions.

We have had one little problem, but it was an easy fix.  I tried to turn it on a few days after we got it and there was nothing.  No power, no light.  My wife swore she had charged it, but I couldn’t get anything from it.  I thought for sure it had bricked on me.  I looked up on Amazon to see if I should return it to them or to the store I bought it from, and I happened upon a forum talking about the same problem.  They recommended holding down the power button for twenty seconds.  I thought it was a long shot, but I gave it a try.  Twenty seconds later, the Kindle Fire was back up and running and I haven’t had the same problem again.

As this is my first foray into tablets, I may not be the best judge, but for what we were looking for, the Kindle Fire is amazing.  Natalie has never interacted with anything like she does her Kindle.  In the few short weeks she’s had it, she’s learned to stop and listen to the directions being given her, how to do matching games, how to connect the dots, how to decimate an army of green pigs and so much more.  If you’re looking at getting a Fire and you have an Autistic child, I can’t recommend it more.  The variety of new apps is growing steadily and there is already so much to choose from (a list of some of Natalie’s favorites is at the bottom).  I find new stuff every day, and while it’s not all a hit, she’s given every one a chance.

And not once have I heard her ask for Twinkle Twinkle again.

Fruit Ninja: http://www.amazon.com/gp/product/B004RJMUJO/ref=s9_bbs_gw_d0_g405_ir01?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=1Y5M05F368ZTRATP441X&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846  So simple, so addictive

Angry Birds: http://www.amazon.com/Rovio-Entertainment-Ltd-Angry-Ad-Free/dp/B004SBQGHS/ref=pd_sim_mas_2  I downloaded the ad free version before I saw there was one specifially for the Fire.  From what I’ve read, the $.99 version is just as good or better.  I just downloaded Rio and Seasons, but haven’t had a chance to check them out.

Monkey Preschool Lunchbox: http://www.amazon.com/THUP-Games-LLC-Preschool-Lunchbox/dp/B004DPC5Y2/ref=pd_sim_mas_15  I can’t say enough good things about this app (in fact, it’s the only one I’ve actually written a review for).  This was the program that helped teach Natalie how matching works and also to listen to what is being asked of her (the monkey makes specific requests and at first, she would just randomly hit the pictures.  Now, she pays attention and usually gets it right the first time.)

Balloon Spell For Kids: http://www.amazon.com/Ikanos-Tech-Balloon-Spell-Kids/dp/B004VCZVC0/ref=pd_sim_mas_48  This game has a word at the bottom and balloons that rise to the top.  You have to pop the balloon with the correct letters in order to spell the word.  My only complaint is it’s too easy to accidentally set the language to something else and then it’s too hard to navigate the menus to switch it back.

Kids Paint & Color: http://www.amazon.com/exec/obidos/tg/detail/-/B0061OABU8/ref=mas_ya?_encoding=UTF8&v=glance This is the art program she seems to like the most.  While some may not like the fact it colors in the details, it functions perfectly for how Natalie’s mind works.

Pretty much anything by AR Entertainment: http://www.amazon.com/s/ref=bl_sr_mobile-apps?_encoding=UTF8&node=2350149011&field-brandtextbin=AR%20Entertainment.net  This company makes the snake puzzle among other things.  I haven’t been disappointed in their apps yet.

There are so many other apps available.  This is just a sampling.  Most of them are $.99, although quite a few are available for free with ads and limited usage (number of puzzles available, etc.).

…But I Play One On TV!

I’ve been thinking a lot about how Autism is reflected on television lately.  Not necessarily documentaries or movies based on the subject, but characters with Autism who are part of a bigger cast.  Generally, they’re portrayed as the outcasts, the weird-o’s, the freaks.  Often, they have nervous tics, exaggerated mannerisms and a unique ability to see through the facade most of us are enshrouded in.  And for some reason, it doesn’t bother me.

Two of the biggest Autistic characters in recent years that comes to my mind are Abed, from Community and Gary, from Alphas.  I’m not sure if Community has ever come right out and called Abed Autistic (my wife claims they did on the “flashback” episode, but I don’t recall), but it seems rather obvious to me.  He’s part of the study group, but separate, constantly lost in his own little world made up of bits and pieces of television, movies and pop culture.  Everyone likes him until he goes a little too out there and suddenly, he’s too different and why can’t he be like everyone else?  Of course, in the end, he’s right, having subverted the egos and selfishness nobody else even realizes they can’t see through.

Abed is quirky, intelligent and has excellent recall.  All of these traits and more made me highly suspicious he was Autistic, before the show runners ever confirmed it.

Gary, on the other hand, is a little more blatant.  He’s mentioned he’s Autistic himself several times on the show, even bringing up his CARS score.  He’s very much aware he’s different, and he recites it to people, like it’s something that’s been drilled into him by his mother (as a side note, I don’t think they’ve ever made mention of his father; this strikes me as realistic given the number of marriages with Autistic children that end in divorce).

Of course, Alphas is a show about people with unique abilities and Gary’s is that he can see electromagnetic wavelengths, to the point where he can read people’s texts, hack into cameras and generally do all the cool stuff you’d normally expect someone sitting at a computer could pull off (assuming, of course, it’s television).  But the rest of the Alphas also have their unique abilities, so it’s really Gary’s Autism that sets him apart.  He repeats things several times, hates his food items touching (don’t even try to get him to eat a burrito) and he’s a stickler for things being the way he thinks they need to be.

I’m sure there plenty of parents out there who cringe when they see characters like this on-screen.  After all, they’re not an accurate representation of *their* children.  They’re certainly not anything like my daughter, Natalie.  But the spectrum is so broad, it’s really hard to define.  These characters do remind me in more ways than one of a few kids I transport.  The kids who are just amazingly smart and who know just about everything there is to know on subjects that interest them.  They’re also the kids who don’t mind getting in other people’s faces, asking loud questions and repeating themselves over and over until given a satisfactory answer.  In other words, they’re smart, gifted kids, who lack social smarts.

To me, they’re the very definition of the face of Autism (unlike when a waitress looked at my daughter a few years back and said, “She doesn’t look Autistic.”)  They’re not as independent as their TV counterparts (although Gary does still live with his mother) and they lack a lot of the scripted charm, but there are some definite similarities.  And it’s nice to see Autism portrayed a little more realistically than, say, the movie “Molly” starring Elizabeth Shue (and I say this as a long-time fan; I mean, who *didn’t* want her to be their babysitter back in the day?)  I cringe just reading about her portrayal as an Autistic and I fear this is society’s view in general of what a person with Autism is like.  Of course, it also has to do with her character becoming *normal*, which is a whole other level of WTF altogether.

I suppose that’s why I welcome Abed and Gary with open arms.  They may not be wholly realistic, but they’re much preferable to the alternative.  They’re not striving to be normal, but rather, they embrace who they are, unapologetically.  When I transport the kids on my bus, I don’t feel embarrassed or ashamed, like I know their parents do (they sometimes ride with their kids and spend the whole time telling them to calm down, be quiet, stop asking questions, etc.).  I feel hopeful.

My daughter is five now, and just barely starting to communicate with us.  I’ve long since given up on her being Ms. Social Butterfly, but to be able to talk, freely and passionately about something she cares about…that is my dream.  When I see these kids, I realize that someday, she might be able to talk to me like that.

It gives me hope.  Hope for her future.  And when I see these shows, these characters, it gives me hope someday, the general public will have a much better idea of what it means for my daughter to be who she is.

And if they want to believe she has some kind of super power, who am I to argue? 🙂

Write What You Know

Just the other night, my wife asked me if I’d ever considered writing a book on what it’s like to raise an Autistic daughter.  My initial response was I’m not good at writing about real life.  I’m more likely to have my interactions with Natalie influence a character’s development than to write a story based on her.  Thomas, the main character in an upcoming book, The Shadow Walker, is loosely based on my observations of Autistic young adults, but it’s not the thrust of the story.  Instead, it has to do with shadow creatures he observes and his obsession with figuring out what they are.

My mind just doesn’t work well with the real, the tangible.  The one time I tried to write a story based on my life, I ended up splitting myself into three different characters in order to explain the triplicity (?) of my personality.  I’ve considered writing a book based on being a para-transit driver, but for some reason, the main character is a woman struggling with her sexuality who falls in love with a dying client.  Yeah, that’s so not based on my life.

The truth of it is, I prefer to make up worlds rather than dwell in this one.  I’ve seen plenty of people comment they can’t stand Sci-Fi or Fantasy because it’s all made up, but that’s exactly the reason I love it.  I get enough of the real world by, well, living in it.  That’s not to say I don’t appreciate other genres.  I read all sorts of books/watch all kinds of movies.  I’m a sucker for a good Rom Com (I know a lot of people would argue that’s a contradiction of terms).  I like period pieces, horror, mysteries, humor, pretty much anything I can find entertainment in.  But when it comes to my own personal writing, I have a hard time keeping it real world.  I highly respect those who can write about their lives or someone else’s and keep it engaging, but that’s not me.  If I’m going to live and breathe and eat my stories, I find the monsters in my head much better company than those on display all day, every day, thanks to the 24-hour news station.  No matter how weird, depraved, odd or messed up my mind can be, it’s got nothing on real life.

As a side note, Ascension is 50% off for the next two days on Smashwords. https://www.smashwords.com/books/view/71161.  And in exciting news (well, to me, anyway), barring any unforeseen difficulties, I should have my second book, The Four-Year-Old Guardian, available for purchase this weekend.  So expect me to start pimping it out here soon. 🙂

Children are better seen *and* heard

“I can’t wait until my child’s old enough to argue with me.  That way I’ll know they’re capable of their own independent thought and not just regurgitating what I tell them.”

These words were said by me back in high school, well before I had a kid.  Who am I kidding?  Back then, I didn’t even have a girlfriend.  Both of my sisters had their first kids fairly young, but I was a late bloomer.  While their sons are well into teen-dom (the oldest is about to have a kid of his own, making my sister – who insists she’s still in her 20’s – quite a young grandmother), my daughter, Natalie, is barely starting Kindergarten next month.

Even though I waited until I was almost 30 to have her, I never lost my belief that children are among the most oppressed castes in society.  They’re expected to talk when spoken to, be silent when told, eat everything on their plate, whether they like it or not and generally be everything we didn’t want to be when we were young.  I managed to stay an advocate for children’s rights well into my adult life, right up to about the time I had a kid of my own….

I must admit, as a parent, it can sometimes be hard to maintain my beliefs.  I see children running around outside, playing with no adults around and I wonder where their parents are.  It doesn’t matter I spent my childhood walking the mean streets of Kennewick with my friends, with no cell phone to call home in case I got in trouble.  I keep as close of an eye on Natalie as I can, but there are times when she’s playing outside, I find myself wishing I could just let her play and I could go inside and get something done.  Maybe wash the dishes, work on a chapter or two.  But whether I’m being paranoid, overbearing or just a good dad, I can’t leave her by herself.  I can hang back and let her play, but I have to be there in case something happens.  I can’t protect her from everything, but I feel like I have to try.  Whether it’s keeping her from throwing her toys over the fence into the neighbor’s yard, trying to stop her from petting the bees so prevalent this time of year or hoping she doesn’t choke on the rocks and weeds she just put in her mouth, it can be exhausting.

Choking on rocks?  Did I mention she’s Autistic?

She was diagnosed when she was 2 and at the time, it seemed impossible.  Sure, she was a little behind in her language, but she was 2.  How could they possibly tell?  Now, at the age of 5, I have no idea where she fall on the spectrum, but there’s little doubt she does.

After two years of preschool and our best efforts, she’s come a long way.  But she’s understimulated, which has its good points (she loves hugs and kisses) and its bad (she has to put everything in her mouth, even if it’s not fit for consumption).  She talks a lot now, but it’s mostly echolalia (parroting things she’s heard from TV or us).  Granted, that’s how most kids learn to talk, but she’s five.  I thought by now, I’d be having philosophical discussions about the “Why” of it all, as children are wont to ask.  Instead, she never questions.  She protests, usually by shouting, “Out!” and motioning for me to get away or by stomping her feet and grabbing her ears while singing Twinkle Twinkle Little Star.  But she never asks why.

So many parents tell me I’m lucky, that once their children started talking, they just wouldn’t shut up.  I have to bite my lip and remind myself they have a different outlook on parenting than I do.  They don’t know what it’s like to wait so long to not just hear their children’s voice, but their thoughts.  Their feelings.  Here I am, five years in, and I still can’t wait for my daughter to argue with me.  Not the flailing around she does when I try to brush her teeth or the biting holes in her clothes she does when she’s having a severe meltdown, but the pure, unadulterated wisdom of a child, telling me what’s what, reminding me I am not infallible, no matter my age.

Even if I do end up having to pull rank on her. 🙂