Autism, community, family, health

Getting It Right: Your Characters With Developmental Disorders: Part 2

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Or: The Danger of Misrepresentation.

White Fang is into The Big Bang Theory right now. For those of you who aren’t familiar with the sitcom, it’s an American program focusing on the lives of 4 geniuses who are brilliant at their jobs, but not so much at love and interpersonal relationships. There are many ways in which this is a program that really appeals to geeks (tons of references to science and science fiction), as well as autists, because while we don’t get some of the references, we definitely get the moments of social and emotional awkwardness.

One of the characters in particular, Sheldon, appears to in fact have Asperger’s Syndrome; but the show never addresses this directly, and there are certain indicators that would really “seal the deal” for those of us with ASD — like him stimming or having certain intense phobias — that aren’t displayed or mentioned in the script. And the producers/directors/writers of the show have stated that, while they see how Sheldon’s traits would encourage viewers to consider him as Asperger’s, that’s not their intention for this character.

So, while I don’t necessarily have a problem with Sheldon existing, I do take slight issue with the way he’s 90% Asperger’s, but isn’t “intended” to be.

Recently, there have been more TV shows and novels trying to portray people with autism in a favorable light, to help build awareness and understanding of the disorders. (That’s right, it’s a disorder or a syndrome — not a disease.) And while I think this is something that we certainly need in our society, it concerns me because I believe most of these people aren’t going about it in the right way.

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Let’s talk about the “diversity” platform for a minute here. Is it just me, or does the “tolerance” movement seem to be championed by wealthy, NeuroTypical, physically healthy, college-educated people? Who can’t really relate to what it’s like to be a stay-at-home ASD parent on one income, with an autistic teenager and a special needs toddler? And yet supposedly they know just what will make White Fang’s education more effective, Muffin’s services more productive, make me feel the world is truly growing in understanding my children?

(Hashtag, not buying it.)

Muffin is not ASD, but he is special needs because of developmental disorders — just not the kind people usually think of with that term. Muffin was born 4 weeks premature, with torticollis, jaundice, acid reflux, and low birth weight. It has been a hard road for our little guy. The torticollis means he has asymmetry in the muscles of his neck, which led to delays in crawling, walking, jumping, and kicking. The acid reflux and his low birth weight meant he had to be on special formula for the first year of his life. We’ve been in and out of doctors’ offices, physical therapy clinics, and specialist appointments since the day he came home from the hospital. (Which happened when he was 9 days old, after being in the NICU from about the second he was born.)

We have managed all of this with one car, limited health insurance, an unusual work schedule (my husband’s), and White Fang learning to babysit. No nannies or in-home assistance, and certainly not on a budget that most politicians would grasp.

Anyway, my point is this — so why/how would I see myself in a film or a book with doctors who get it perfect the first time, a household income of 50 grand, reliable transportation, and kids that are always compliant with whatever treatments are recommended for them?

And how/why would I see myself in a portrayal of girls/women who get diagnosed overnight by some amazing specialist, and suddenly everyone in their lives gets their “quirks”, and lets them stim without saying anything, and be alone for hours on end and… Yeah, no. It doesn’t go like that.

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As much as I wish the entire NT world would become truly tolerant of ASD, this is not realistic. So, here’s what we need more of in fiction that’s hoping to bridge the gap:

  • Characters who are diagnosed but still have challenges. Being ASD in a world that’s threatening to your very being (nature can be overstimulating, folks) means we are not magically “made all better” by taking anti-anxiety meds and attending counseling. (Without creating any spoilers for my own work, a lot of Volume 2 will focus on accurate autism representation.)
  • An expanding depiction of developmental disorders. For example, Muffin’s torticollis. As well as speech disorders, dyslexia, phobias, social anxiety, ADHD, and sensory perception difficulties. (We seriously need fictional parents trying to raise children who won’t eat anything orange or can’t wear clothes made of polyester.)
  • Fiction that treats all of this as someone’s normal, and not something to be feared or eliminated. Getting rid of the negative parts of my or White Fang’s autism might also make our positive (and unique) traits vanish. It’s about finding a healthy balance, not a “cure.”
  • Fiction that is honest about how challenging all this can be for parents. But also making it clear that so many families would not trade their experience for a “regular” life.

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So, we also need more people in the know writing their stories. Is it your relative, friend, neighbor, co-worker in this situation? Ask them if they’d mind being interviewed for a magazine article, blog post, short story, or future novel. (A lot of them will say yes.)

Is it you (trying to live on Mars when you’re actually from Pluto)? Tell your story. Don’t be afraid. Blog, or vlog. Allow people to interview you. (You can do it. Believe in yourself.)

And if you’re completely NT, and don’t happen to know anyone who’s ASD (or developmentally challenged), then please get it out of your head that you know what’s best for us.

And if you already know that, thank you. Feel free to join our cause. We’d be happy to have you.

Just bring lots of patience, and cake, blankets, and books, and don’t take it personally if we can’t look you in the eye.

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books, community, reading

Life Hacks for Bookdragons

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So, you are a bookdragon. You take pride in this (as well you should). But after you embark on this life, you realize there are some things that could be problematic — for example, running out of shelf space, losing your bookmarks, or not having the budget to acquire all of the books. Well, today we are here to save your precious little overwraught selves with some tips to quell the quandaries.

How to not run out of shelf space. Having a designated bookcase (a pre-built, independent piece of furniture) is extremely helpful. But, if you collect several new books a year, they’ll fill up pretty quickly. So it may work better for you to have shelves that can be placed on walls (think with nuts and bolts — do consider your safety), possibly expanding upwards or outwards as needed.

Also, think about getting rid of books every now and again to help make space for new acquisitions. I know, I know, to some ears that will be heresy. But honestly, sometimes we just know we’re not going to read a book again, and library sales and charity shops are more than happy to take on well-treated secondhand books.

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Keep things organized. If you tend to have a long TBR or maybe receive a lot of ARCs, take notes when deliveries arrive. Try having a journal detailing the date of when new books came to your home, or of when you need to post the review by. Place sticky notes on or near your bookshelves or calendar, so that you don’t accidentally start reading this August release before finishing that July ARC.

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Do use bookmarks. Some readers don’t, and it’s really a personal preference, but dog-earing pages is just, well, bad. Infrequent readers tend to commit the even more heinous sin of leaving the book out, facedown on the page where they stopped. In the interest of keeping the binding intact for longer, please do not do this. (Some bookdragons will come after you, and they will not be happy.)

Bookmarks are easy to find for sale in bookstores and on websites. Libraries also often give them away. And you can honestly use old grocery lists or receipts as well (my husband uses index cards). Or you can make your own, if you’re craft-inclined.

If your issue is losing bookmarks, sticky notes will help with that. Or bookmarks with clips that attach them directly to the page.

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Don’t underestimate the power of the public library. Money needs to be spent on a million things other than new books. So, if you just don’t have a spare thousand dollars for all those new releases (and who does?), be patient, and within a few months, many of them will be available through your local library. (Don’t forget about inter-library loans as well. If where you live the library is simply the size of a postage stamp, requesting books from bigger libraries nearby is usually pretty easy and free.)

Take advantage of secondhand bookstores, online sales, and entering giveaways. Self-explanatory, really, when it comes to saving money.

Don’t request ARCs. If your problem is too many books waiting to be read, then reduce your future TBR by discontinuing your requests for advance copies of new releases. Many of us are beginning to feel that the cons of ARCs outweigh the benefits.

Limit what’s on your Kindle. If most of your TBR is physical (rather than digital) it’ll be much easier to keep track of, and trimmed to a healthy size.

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blogging, community, writing

The Decision Has Been Made

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There will be no Camp NaNo happening here this July. I have too many plans for Volume 2 to complete it on such a strict time limit as one month.

There will also be no memes or tags or regular themed, er, things for the foreseeable future. I have a short but intense TBR and discussion posts plan to work my way through.

There will probably also be less Twitter. I honestly love my Twitter community, and I will certainly be checking in with them. But the, you know, random sort of feed-reading that occurs all too often, when we’re really supposed to be doing something else (like sleeping, or writing) — that’s getting to me. It’s becoming a bit overwhelming. Not healthy.

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As the true summer approaches (it doesn’t feel like it’s started yet, since we haven’t finished the school year here), there are also other things that will happen — like children’s schedules changing — and the time for new errands begins — hopefully trips to the Farmers’ Market and the park and breaking out different recipes… As I mentioned earlier, I may be around online less in general soon.

But one of my major priorities is completing my Warriors TBR (before the new releases in the fall), and finishing Volume 2.

And I can’t even explain why I feel guilty for having made these choices! Please tell me this is normal blogger/online presence guilt, and it’s not just me?!

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So, expect to see something in this space once or twice a week for the next couple of months.

We shall still discuss bookish topics and fawn over lovely cat pictures.

Snippets from Volume 2 may even appear.

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Autism, community, movies

I’m Sorry, But I Just Don’t Get…

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Okay, this is probably a silly post, but I honestly have to say this is something that’s been troubling me. In the last few months, there’s been some major buzz around the new release of the Guardians of the Galaxy sequel, and the first new Wonder Woman film in forever. My Twitter feed is blowing up with the excitement over all of it. And I’m…well, I’m significantly — unimpressed.

Maybe it’s just an autism thing, but these are two realms of fandom that I may never be able to relate to. My true, heartfelt, unedited feelings towards Guardians of the Galaxy (yes, I saw the first movie) were: “But this is a group of criminals, fugitives from various transgressions against a variety of civilizations, including a talking tree and a talking racoon that just don’t do justice to either of those concepts…the green alien lady is seen as a traitor to her own people, and some random human kidnapped with only the greatest hits of the 70s in his Walkman becomes their leader? HUH? Why does the ruling class with all the power and the technology see them as a threat? And why would I see them as anything I’d want rescuing me?”

And then when I saw the trailers for Wonder Woman, my immediate reaction was: “Oh, don’t tell me they’re bringing back that nonsense, not when the feminist movement has come so far.”

(Man, am I going to get some flack for this.)

And in a way I feel bad, because so many people (in a lot of instances, people I know) are really happy that there was another Guardians of the Galaxy, and were really excited for Wonder Woman. And part of me also wonders why I can’t see beyond my initial views to grasp what they appreciate about these concepts.

But I’m struggling. I just can’t find a talking tree that only says the same thing over and over again amusing. I simply don’t see true feminist values in an Amazonian’s costume that shows off much more skin than is necessary to go fight bad guys.

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And I don’t want to hurt anyone’s feelings — I am a big subscriber to the “live and let live” view of surviving this existence. If you are totally in love with either/both of these fandoms, then go you. I’m glad it works for you, honestly. But I may have to just resign myself to not being part of it.

When I think of flawed superheroes, I think of Iron Man, and am satisfied with it. When I think of kick-butt women who personify using their feminine wiles to their advantage, I think of Natasha Romanoff/Black Widow, and I’m satisfied. Again, these are just my opinions. But they come from ideas that I hold dear and true to my core.

While I’m all for people who make mistakes being given second chances, I’m not for them getting broken out of prison — where they’re supposed to be facing the consequences for their bad choices — and suddenly saving the city (even when most of the citizens hated them?!), and then soaring away on their probably-stolen spaceship, all based on who the random human’s father supposedly is (and introduced way too late in the movie for me to buy it, sorry, folks).

While I’m all for women not “needing” men, and all for women superheroes, I just don’t (and probably never will) condone their “proving” it by running around in little more than a bathing suit. It’s extremely objectifying, it’s extremely sexist, and extremely impractical.

As a female on the autism spectrum, I am a rare breed. Most of the high-functioning ASD-ers do happen to be male, for whatever reason, and until recently, many girls who are Asperger’s or closer to PDD (that’d be me) were misdiagnosed as ADHD or anxiety/depression. And still, there aren’t that many of us. Take a room of 20 people on the spectrum, you’ll most likely count 15 boys and 5 girls. I have no answers for this variance, just the facts.

But what concretely puts us on the spectrum is certain neurological patterning, such as rigid thinking and a very low tolerance for “changing rules” morality. What I mean by this is: Why is it, in one movie, a man who robs a bank has to go to jail to atone for his sins, while, in another movie, another criminal is allowed to rob the banks of 14 planets and get away just because he has what that galaxy considers an awesome soundtrack?

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I may never be able to suspend my natural disbelief of such a notion to enjoy Guardians of the Galaxy. I may never comprehend why women have to fight to vote, to run for office, to go to school, to marry whom they choose, but also apparently have no problem with letting their clevage do more talking than their sword.

And yet, I wish I could be part of the enthusiasm surrounding these fandoms. Both these films — from a production-quality view — seem well-made and should be fun to watch. However…

Like I said, I keep coming back to these sticking points, and they are major for me.

I feel like I’m being invited to the party but I may never join in. And that feels like far too much of the rest of my life. I constantly avoid social gatherings, meeting people, going to new places because my sensory perception doesn’t like lots of noise and crowds and spaces that might not be warm/cool/big enough. And while I stand behind my right to avoid for the sake of my health (I will get panic attacks, migraines, etc.), I also don’t like the idea of never trying at all.

Sometimes I think about the idea of meeting in person someone I know well online. I believe I could do it — as long as I picked the place, the time of day, the environment, the, well, everything. And honestly, it’s not being “picky” or even “neurotic” — it’s protecting my physical health. Unfortunately, most people don’t understand that yet. Aren’t there superheroes that defend autistic values?

Maybe one day there will be?

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blogging, community

Some Announcements, Summer “Plans” and Foreseen Issues (Which May Cause Howls and Grumblings)

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Okay, okay, I promise to try to reign in the long post titles for a while.

So, my apologies for not being around much the last few days — I’m on the downside of a cold (that hit me much harder than anticipated), White Fang is officially in his last full week of school for the year, and Muffin is…well, being Muffin. (The other day, while I was trying to rest — because I couldn’t breathe or walk faster than a turtle — there was an incident with a misbehaving toddler and baby powder. It was not pretty. And it did wonders for my stress level, of course.)

Anyway, so along with being busy, and sick, and knowing that while the sickness won’t last (thankfully), I am very aware that my schedule over the next couple of weeks isn’t calming down just yet.

Also I am seriously trying to finish my draft of Volume 2, and that of course takes time and effort, and ideally the rest of the world just going away for a little bit.

So, if I don’t make regular appearances here for the short-term future, all of this shall be why.

As of now, White Fang is slotted for a camp in July (and we have yet to obtain summer clothing that fits — thanks, growth spurt). We’re still waiting to hear about an actual start date for Muffin at preschool. Otherwise we’re not expecting to go anywhere (though that would be nice, as we haven’t had a formal vacation in quite a while).

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Whining aside, still more extremely positive reviews on Masters and Beginners: Volume 1 are popping up, and I am very excited and humbled. If you haven’t yet obtained your copy, remember, there are still subscription boxes available (which means free gifts), and I do have an ebook (download-able to various sorts of computers, tablets, etc.), which at the moment comes with my short story collection at no extra charge. Do see my heading or sidebar for my contact information, so we can discuss paying and shipping or email and all the things related to this notion.

Okay, I am really bad at the self-promotion. Many, many thanks to all who have so far read and enjoyed Volume 1 and are encouraging others to follow their lead.

I am also planning to participate in Camp NaNo in July — whether this shall actually happen remains to be seen.

And eventually I will conquer my summer TBR. It’s been intensely shortened, to make it muchly realistic for my life.

Especially since, once fall approacheth, there shall be major shakeups headed my way.

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Enough on that right now. I am going to have two months in between. Remember that, Moth…

And so, not that it’s really exciting, I proceed to start catching up on neglected chores and tasks that must be fulfilled, regardless of the state of my health…

May your summers be wonderfully glorious and blessed with seashells and windchimes and cloud-free skies.

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blogging, community, family, writing

Half-Year Wrap-up

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HOW IS IT JUNE?!?! 

Ahem.

Okay, back at the beginning of this year (*sobbing over not yet developing the Time Lord gene that allows me to slow down the passage of months*), my plan was to post a wrap-up every 4 weeks, summarizing the past 30 days. In no way, shape or form did that come to fruition. (Hmmm, actually, maybe I squeezed out one — in the recent re-design of my layout, some things got shifted, moved, maybe cancelled…?!)

All right, trying again: So I’ve elected instead to attempt a half-year wrap-up. (Then I don’t have to worry about doing it again until December…)

Also, lately we have some new faces around here *waves* *thank you!*, so this could be a good way to catch up, too.

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JANUARY: It was my second blogiversary! I have now officially been blogging for well over two years!

FEBRUARY: White Fang (my oldest son) turned 14 on the 15th. He’s an accomplished YouTuber, and does well in school, and is famous in our community for having read almost every single publication in the Warriors series. (It’s where his screen name comes from.) His current obsession, er, hobby is Minecraft. For those of you who may not know, he’s on the high-functioning end of the autism spectrum, and I do still remember when he was a little baby.

MARCH: This month passed in pretty much a haze of storms, specialist meetings for Muffin, and preparing for my printing and official launch of Volume 1.

APRIL: April was a big stinking deal around here. On April 21st was the official release of Masters and Beginners (Volume 1 of the Order of the Twelve Tribes). It’s the first novel in my YA contemporary fantasy series (say that 3 times fast), and so far it’s receiving rave reviews in the blogisphere and on Goodreads. I am immensely pleased with this.

(If you’re interested in obtaining your own copy — paperback or digital — of Volume 1, see the blatant advertisement in my heading or sidebar.)

I participated in Camp NaNo for the first time. I reached my target word count, but the end result sucked (in my very biased, first-person-author view). Well, at least I know now what I don’t want to do with Volume 2… My revisions are so far going pretty well, and my plan for the future is to make July’s Camp NaNo Volume 2 Attempt 2.0. (Does any of that make sense?)

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MAY: May kind of blew by for me, as I had more meetings for Muffin, lots of editing to consider, TBR-trimming to do, and little things to arrange for White Fang before the end of the school year arrived.

JUNE: Last night was White Fang’s final chorus concert of the year. He starts final exams next week. Soon he will be finishing middle school. (Insert parental wailing here.)

Muffin turned 3 on the 3rd. He is a busy little guy. For several months now he’s been receiving speech therapy, and on his 4th or so round of physical therapy. By September, he’ll be enrolled in a preschool program for special needs children.

At present, he is obsessed with How to Train Your Dragon and dinosaurs.

And there we have it! Hope you’re all having a pleasant spring, moths!

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community, historical fiction

Cultural Authenticity in Fiction: Part 2

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All right, ABC Studios, I am mad, and with good reason. Did anybody else see the premiere of “Still Star-Crossed”, a new TV show that takes up the story of Romeo and Juliet’s grieving families where Shakespeare’s play left off? If you have, I’d love to hear your thoughts (just be prepared mine will be a little grouchy). If you didn’t, here’s a brief summary:

The set is supposed to be the late 1500s/early 1600s in Verona, Italy. The first episode starts with introducing the city’s ruling family (a black father/brother/sister with British accents); two big, feuding families, the Capulets and Montagues (both of which have white and black relatives); and the tragic young couple, Romeo and Juliet, caught in the middle. Romeo is black, Juliet is white; Romeo is 15 or 16, and Juliet is about 14, which is the only part of Shakespeare’s play the producers got right.

This is exactly what ticks me off. In the 16th century in Italy, the native Caucasians were in power and wealth, that historically simple. Anyone of African descent found within the city walls would have been slaves. They absolutely would not have been intermarrying with politically important families. And I am not sorry and I do not care if that offends the modern sensibilities of the network.

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If the producers truly felt that the 500-year-old story of Romeo and Juliet was worth revisiting with a diverse cast, how about setting it in the 1950s American South? Or in 2015 Los Angeles? Why couldn’t it be an Asian Romeo and a Hispanic Juliet? If the network is thinking about building bridges in our community, I’m not sure spotlighting the tensions between races is a good way to do it.

The idea of the show is that, after the tragic demise of Romeo and Juliet, the families proceed with an arranged marriage between a Capulet and a Montague to hopefully put the feud to rest. But, of course, the plan won’t work, and the feud will go on for the next 10 episodes or whatever.

But I won’t be watching it.

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