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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Autism, health

Autistic Burnout

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So, this is such a very personal post, and I wasn’t even going to bring it up.

I changed my mind. A dozen times. Finally landed here.

I’m suffering from what’s known as autistic burnout. We can all think of a time when we got burned out — like after finishing final exams, or graduating, planning a vacation, a wedding, moving house, having a baby — blah de blah. (Please excuse the sarcasm. There might be a lot of it.)

Anyway, here’s where it’s different for autists. The burnout comes not just after a period of prolonged or intense stress. It affects literally every part of our lives — our sleep, our appetite, temper, patience with children or misbehaving pets, the little annoyances of co-workers/spouses/neighbors/grocery store clerks. We are suffering greatly inside, and it often comes off as we’re being insensitive or rude or just selfish.

We’re not. We don’t mean to be.

The walls are closing in on us. It brings about panic attacks. Insomnia. Depression.

It goes on sometimes for a while. (Like months instead of a few days.)

Basically we’ll start to get control of the immediate situation (like we’ve quit a job, completed a course, taken a vacation, cut back on caffeine), and we’ll feel sort of better for a week, or even almost a month. Then we’ll have a meltdown because there were one too many phone calls that morning, and are back to square one.

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None of this is a choice. It becomes pure physical reaction based on anxiety created from overstimulated nerves.

IT SUCKS.

I have no concrete plan for complete recovery. Oh, there are suggestions — research and support organizations think therapy, or a support group, a vacation, cutting back on responsibilities, learning your limits and sticking to them, not pressuring yourself to “fit in” (pretend not to be ASD), could all help with recovering from/preventing burnout. All of this sounds fine. The problem for me is that my personal circumstances make a lot of it tough — I don’t always have reliable transportation, someone to watch Muffin, limited insurance — blah de blah, you get the idea.

Part of my plan so far includes not taking on anything new (for example, forget Camp NaNo, and not committing to posting more than twice a week for the rest of the summer). Also I’m trying to get my family to understand that I need more alone time, and if I don’t want to go to this event or on that day trip, it has nothing to do with them.

This will be a process. It may be a long one. (I am starting to hyperventilate at the very thought.)

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Sleep would also be really nice, but it’s a rare commodity in my household. Eating well is definitely advised. Not that I feel like cooking a lot of the time. Blah de blah…

I guess the major thing about this feeling is the concern that getting to the light at the end of the tunnel is…well…so–far–off.

Putting in more work on something that has already worn you out is not at all exciting, or even feasible.

I’ve come across a few things on blogs, vlogs, and group pages that suggest this is more likely to happen to autists nearing preschool age, adolescence, or middle age — because these are all times in life when the body and brain are growing or changing quickly, and that means for us we’re exerting even more effort into a process we have to go through, anyway. Our neurons and metabolisms are just exhausted afterwards.

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So, what is the solution? Well, for some of us it might be quitting a job, changing your living environment (everything from redecorating to moving), not participating in that bake sale, taking a hiatus from college. I’ve already cut back a lot, though — deciding not to worry about going back to teaching dance until next year, decreasing the pace on finishing Volume 2-4, not scheduling any appointments for Muffin that can be put off until fall.

But I can already tell just recognizing what would overwhelm me isn’t going to solve it all.

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I think I need not to read anything potentially upsetting for — well, this side of forever. Keep my TBR to re-reads of confirmed favorites and middle-grade fluffy fantasies.

I think I need to avoid potentially upsetting television — so, that’s the news gone. Okay, everything, really, except for Jeopardy! and The Big Bang Theory with White Fang. And kids’ movies.

Probably explore more instrumental music. Burn candles again. Borrow a stuffed animal from my kids for sleeping. Maybe try more vegetarian food.

Make the cat sleep with me every night.

Don’t even attempt to debate anything with anybody on social media.

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So, this has been a rather whiny post, and if you’ve made this far, thank you. (I mean it.)

Please enjoy the re-posts, and your own summers and families. I do love you all, and I so deeply appreciate all your support.

Wh-hine…

Deep breath.

Roar.

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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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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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Autism, family, Parenting, reading, writing

The Indistinct Howls and Grumbling Edition

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Seriously, this is what you people most want to read about? Well, I guess I asked for it when I included it as an option in the latest Twitter poll… But, sigh… And, well, I suppose this post is off to a good start.

Here’s what I’ve been grumbling about lately:

Muffin has been bingeing Dreamworks movies, particularly How to Train Your Dragon and the Ice Age series. He is presently obsessed with dragons. (I can hear some of you applauding his good taste.) I love dragons, too, and Ice Age. But every once in a while, it would be really nice for him to stop interchanging the discs at a nearly frantic pace, and watch something else for a little bit, maybe…

My writer’s playlist has run dry, feels hackneyed, and my ears are tired of it. Not that I’m never going to listen to any of these songs again. It’s just that, right now, I want something different, and I’m rather finnicky when it comes to selecting stuff like music…

I can’t seem to finish my tea while it’s still hot. It used to be mostly because of children, but nowadays it appears to have become its own thing. Groan…

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Work is progressing on Volume 2. Some of that results in lots of mumblings and complaints to self and the occasional howl…

I’m practically stalking my Goodreads page, hoping for amazing stats on Volume 1. It is being well-received, and there are some impending reviews which I know are going to be good. More than 170 people have entered my Goodreads giveaway (which ends Wednesday), and for a debut author, this is truly incredible. I guess I’m a little worried about this planing off, though, and that definitely results in howling…

I’ve hit a reading slump. I’ve knocked everything new off my TBR, except for Dawn of the Clans, which I don’t feel like starting right now. None of the new releases this spring are grabbing my attention, and this is generating a vaguely unsettling feeling…

The season finale of Riverdale was last week. This is now one of the only TV shows I regularly watch. Honestly, I don’t mind having to wait for the new season, I’m not 12. But the realization hit me that by October, by the time all the new episodes will be premiering, a whole lot will most likely be different in my life…

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Muffin will be starting preschool by the fall, if not before. While this is all good, because he’ll be able to receive all his services in one place, and I’ll certainly have more time to write, or even think about going back to teaching dance, it still means a big upheaval in our daily lives. That creates howling for a bunch of reasons…

As I think about the future, the fact that White Fang will be in high school in September is also not far from my mind. WHAT. HOW. DID. THIS. HAPPEN. I swear he was Muffin’s age just last month. Okay, it was more than 10 years ago. I am old. More than that, I just… How did he become so much his own person, who has this mind and personality and life that I’m learning about as we go — rather than being the expert on my small child? Because he grew up and discovered who he is and what he’s into, that’s why — and isn’t that what I tried so hard for over a decade to achieve? Insert wolf impression here…

My husband finally started reading Volume 1. Yes, it is among the great ironic moments of my life that some of the last people to read my first release are my immediate family. But the reason this is so momentuous for me is because my husband does not read fantasy or speculative fiction at all. (He once picked up a Frank Peretti novel circa 1995, and never finished it.) I’ve had to explain to him what a TARDIS is, that “faery” is a correct spelling, and the significance of Shroedinger’s Cat. He is so not a geek. Anyway, the fact that he got through the Prologue of Volume 1 and said, “This is really good!”, has intense personal meaning.

A-owwwwwwwwww…

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There are also some big personal things happening for a few people I know, and this gets to me, because I want to be able to help, and in some instances, I just can’t. Either I don’t live close enough, or it’s not my place to step in, and there’s really not much I can do other than stand back and watch developments unfold. I am a do-er, I like to participate in situations resolving, and know that it’s all going well. Especially when it concerns people I care about. So this is a tough bit.

A-owwwwwww…

Anyone have time to post a glowing review of Volume 1 to make me feel better?

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Autism, blogging, Encouragement, family, Parenting, writing

Mothering and Writing

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So, this was the next most-voted-for on my Twitter account poll. For those of you who don’t follow my Twitter feed and may be wondering what the blazes I’m going on about, I’m referring to the fact that, while I was sick, I truly had no energy/time/inspiration, but knew that eventually — like, when I was no longer sick — I would desire to post something on the blog (if nothing else, so you all knew I was alive). Anyway, I decided that the honorable tradition of asking your readers really wasn’t such a bad notion; so I placed a poll on Twitter — “what do I post about next?”

And, here we are: *mothering and writing*.

As most of you know, I am beset on a daily basis by two underage beings, one small, one taller than me, who are both under my charge and my jurisdiction. In human speak: I am a parent. (To three if you count the cat.) So, I spend a fair amount of my time cooking for the small thing, cleaning up after his destruction, making sure he participates in his physical and speech therapy home sessions, and that he doesn’t conquer Mars without a signed permission slip. (Oh, who are we kidding, Muffin sets no score by what I grant him permission to do.)

And White Fang, when he’s not in school, needs constant reminders to finish his chores, finish his homework, eat something, and prepare his dirty laundry for the washer, because he is a teenager and Minecraft is more important than anything else. And so, between all of this, there are days when writing (which I have now turned into my livelihood) becomes the challenge.

How do you balance being a parent with being a writer? the unnamed pollsters were undoubtedly yelling at their screens (and praying for answers they could use in their own lives). Well, I truly hope I don’t cause more yelling, but the fact is, not one thing works for everybody, and I can only relay what has worked (generally) for me, and honestly wish you blessings on your schedule and accomplishment.

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First, it’s all about time management. If your kids are in school, then you have the chance to dedicate the morning or the afternoon (on that day with no errands or chores or appointments) to writing, or editing, or goofing off on the internet and calling it “research.” But, no, seriously, when you have the opportunity to work, don’t squander it on trying to find the best middle name for your protagonist or determine what breed of dog their great-uncle owned in 1989. Just write — the major stuff, like the plot — and even if you end up cutting out a lot later, know you’re at least you’re making progress.

If your kids are still small (like Muffin), and need more attention than the ones who walk and talk and can do a lot for themselves, take advantage of naps, or find a babysitter for Wednesday afternoons — just write when you can. If you need to type everything because of ease or quicker achievement, do so. (Personally, I prefer to start with paper and pen, because working around the random scribbles when a pen was stolen, or an occasional grubby fingerprint on the page, is a lot easier than trying to cope with the computer being turned off when you’re halfway to your word count goal for that day.)

If you can, take a short vacation by yourself, and create your own writer’s retreat — send the kids to grandma’s once a month, or go to a favorite cafe once a week. (The latter sort of thing never works for me, because I can’t concentrate when I’m around other people vocally debating whether they want mocha or vanilla shots in their espresso.)

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Something that really helps me organize and plan my schedule and my plot is participating in Camp NaNoWriMo (which isn’t the contest, but more like a workshop). You can find like-minded individuals to bounce ideas off, whine to, or cheer each other on. Thank heavens it’s only twice a year ( because I also need to do marketing, and blogging, and take showers and even leave the house once in a while). But every few months, it’s important to make sure I’m on the right track with my WIP, and not wandering off into Neverland following a totally unrelated minor character or origin story for their pet lizard.

And it’s a really big deal to remember why you write. Is it a hobby, something you can put off for weeks at a time, and honestly be all right with? Or is it a sort of calling, a venture that you feel is necessary to include in your life? Do you dream of seeing your work in print, for the world to share? If so, then you truly need to put in the effort.

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