Autism, family, Parenting

Runt, Inc.

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Years ago, when White Fang was little, we referred to him as “the Runt.” Obviously he grew out of physically or emotionally fitting that title, yet we still fondly remember. We joked that the name of our family business (which we do not have) should be Runt, Inc.

Now we do actually have a Runt once again. But interestingly, we don’t refer to Muffin that way. It’s like White Fang secured that term so concretely in our memories that we never even considered applying it to Muffin.

Yet in so many ways Muffin does fit the idea of “a runt.” He was tiny when he was born, and he’s still a pretty little guy. However, White Fang certainly taught us that “runts” are not to be underestimated.

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White Fang was diagnosed ASD at age 4. He couldn’t speak proper words or sentences then. He needed occupational therapy and went to a special needs preschool for a year. He only graduated from speech therapy in 6th grade.

But he’s also spent those years learning to play percussion, singing in chorus, making the honor roll, and now he’s a programmer in training.

Muffin spent the first week of his life in the NICU. He still has to go to physical and speech therapy, and has fought hard to be as mobile as he is. He survived jaundice, acid reflux, lazy eye (and its surgery).

White Fang has sensory issues with texture, smell, and taste that mean he’s not a fun person to cook for. But he’s a master at changing diapers.

He and Muffin already have a very strong brotherly bond. I already know they will be there for each other in ways I can’t even imagine yet. White Fang knows what it’s like to have a rough start in life, and that you don’t have to let that define you. Muffin only knows his big brother takes care of him and plays with him and looks out for him. But he loves White Fang, too; and to Muffin, the ASD is normal. I have a feeling he’ll have White Fang’s back in ways we can’t even imagine yet.

So, yeah, don’t underestimate the runts.

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Autism, family

The Lens

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We all see the world through a lens. We often don’t want to admit it, but it’s true.

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But we need to speak up. Not the neurotypical folks who profess to have our corner — those of us on the spectrum. A lot of NTs do love us and support us being who we are — no forced conforming, no cure. And that’s the part I want to address right now.

We are not “broken.” We do not need to be “cured.” We are simply a way of living, a way of being that the rest of the world hasn’t caught onto yet.

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I put all these pleasant pictures in this post to remind myself that I don’t want to go on a rant today. There are other things I have to get to, and they feel more important this morning than focusing on the negative.

In a very loud and busy world, we are the quiet, the simplicity, the sense of taking a deep breath for the pure reason of feeling the sensation of our body and mind filling with fresh air.

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We hold up a lens to the world, and adjust it until we find the stillness, the colors, the tranquility of rest.

We love, we laugh, we observe. We think, we explore.

We create music and art, we write and some of us dance. We know the power of words and feelings, maybe better than most.

We hope to be accepted, because we really don’t see any reason to change our perspective.

Being appreciated as we are, and even respected, would be just great.

Hopefully one day there will be no need to adjust others’ lenses.

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family, Parenting, reading, Young Adult fiction

On The Subject of Desensitization

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I’ve mentioned how I feel about this topic before. But lately it’s really been bothering me. And apparently it is not just me, as there are a lot of reviews popping up around the online world regarding extreme violence and inappropriate content in books aimed at younger readers.

In the past year, I’ve come across a long list (we’re talking a whole arm here) of novels marketed as YA that I would completely and utterly not let my 14-year-old son read. (Not until he’s 18, because then he’s allowed to make more of his own decisions about this sort of thing.) And honestly, as a parent, I’m really concerned that so many teenagers are reading them. I know a lot of college students and twenty-something adults do read YA as well, and that bothers me a lot less, because if this sort of content is intended for people over 17, then that’s a different matter.

But, seriously, what kind of society do we live in when we, mothers and fathers wanting to protect our children, see something labeled as “Young Adult” or “Juvenile,” and don’t check it out ourselves? And don’t give me the argument of, “Well, it passed the ratings board, so it must be fine.” IT MIGHT NOT BE. Do your own research, folks.

Anyway, so onto my major discussion issue for today: What sort of lessons are we instilling in our culture, our families, our future, when we act like gratuitous violence and sex in our entertainment is considered perfectly acceptable for 11-year-olds to stumble across?

And then when people bring up the very reasonable idea that this type of thing really isn’t cool, we’re called “too sensitive” or “overly emotional” and told to “get a grip” and “stop being such a wuss.”

Well, then, I’m a self-declared sensitive, emotional wuss — and I DON’T CARE what the naysayers think.

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And I truly feel I am not a prude for suggesting this is a healthy cultural approach.

I am not one for censorship. Seriously, I’m not. But I firmly believe there need to be stricter social guidelines — particularly around children — on many of these issues.

Remember when we were young (I remember when the Berlin Wall came down; use that as your rule of thumb for guessing my age), and on Friday nights we’d be allowed to stay up and watch something like an old James Bond movie, back when the sexual references were mostly discreet, the language was reserved, and the violence was so clearly stunt men overdramatically collapsing onto cardboard boxes? And after we went to bed, moms and dads would watch, say, Lethal Weapon, which would, by today’s standards, be rather tame?

So, this is the crux of my biscuit: I firmly believe we need to re-evaluate our standards.

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I am an adult; I am very aware of the horrors the real world knows. But choosing to be polite is far from the same as being ignorant. Wanting to keep my 3-year-old innocent a little longer is not overprotective parenting.

I support teenagers being informed. I do not support them becoming desensitized.

If we’re supposed to be teaching our kids to love everybody, then why are we also suggesting that the best way to deal with a disagreement is to blow up somebody’s house with fancy special effects (and stream it live)?

What’s the point of encouraging kids to wait until marriage for certain levels of physical intimacy, and then publish novels — sold next to the Nintendo games — that include graphic descriptions of such actions (between unmarried 16-year-olds)?

We are sending extremely mixed messages to the next generation. And we need to knock it off.

Having a YA novel with violence in it for context — and carefully selecting how we describe the violence — is not in itself bad. For example, what if part of the point of the story covers terrorism, war, a car accident, or a super-spy like Jason Bourne? And if I’m watching a medical drama like Grey’s Anatomy, I don’t mind fake human innards on an operating table, because the show is about surgeons. But would I recommend a 3rd grader sit down and watch Grey’s Anatomy with me? Dear God, no.

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We need to be disturbed when we drive past a car accident where somebody may be seriously injured. We need to dive under the covers while trying to watch Pet Semetary. (By the way, I don’t watch horror, anyway.) We should be concerned (and not laugh) when a 5-year-old repeats the f-word.

I am becoming more aware that many people who should be disturbed by these things are not. And that disturbs me. When we read a book or see a movie that has a scene graphically depicting the violent death of a child or animal, we need to be angry, heartbroken, and questioning why the writers/directors found it necessary to include that level of detail.

It’s why we root for the Winchester brothers in Supernatural, who are definitely not saints. It’s why we designate James Bond as the good guy — because, while flawed, he certainly is not an evil villain. Why we support Jason Bourne beating up a bunch of guys on his way to find the truth — because his ultimate goal is not pure, malicious vengeance.

Why, when faced with the ultimate Time Lord question, to go back and kill Hitler as a schoolboy, White Fang and I concretely say no — because what if, just this once, he turns out to be good?

It’s why I will no longer watch R-rated movies, or read R-rated novels. Why I am not letting my children near them. Why I am teaching them to respect and love people who don’t look like them, or make choices we may not agree with.

It’s why I won’t support (financially or otherwise) authors that are promoting messages distinctly opposite from this.

And why I will still keep them in my prayers.

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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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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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