Shout Out To The Kids Who Tic

I posted this on my Tumblr a few days ago, but I figured I might as well post it here, too, because it's important to me, and may be important to some of you, too, so here, have some positivity:


Shout out to the autistic kids with Tourette’s

Shout out to the allistic kids with Tourette’s

Shout out to the kids with Tourette’s that have no comorbid disorders

Shout out to the kids who have so many comorbid disorders it sometimes feels like you’re drowning

Shout out to the kids who have very soft, tiny tics, and shout out to the kids who scream and punch things when they tic

Shout out to the kids with self-injurious tics, shout out to the kids with palilalia, echolalia, coprolalia, shout out to the kids who don’t fit into any pre-determined categories and shout out to the ones who fit in ALL the pre-determined categories

Shout out to the kids whose doctors try to de-diagnose them, shout out to the kids still waiting for a diagnosis, shout out to the kids whose parents or teachers or classmates tell them they’re faking, to the kids who are starting to wonder if maybe they are faking, shout out to the kids who are happily and firmly diagnosed and who are fortunate enough to have supportive kith and kin, shout out to the kids who never have to doubt that they’re telling the truth

Shout out to the kids who’ve been ticking since age 2, shout out to the kids who didn’t start ticking until sixteen, shout out to the kids who grew up and don’t tic anymore, shout out to all the adults who were told they’d stop ticking at eighteen but never did, shout out to the kids whose whole family tics and shout out to the kids who happen to be the first Tiquer in their family line

Shout out to the kids on medication, to the kids who never took medication, to the kids who tried medication and decided it wasn’t for them, shout out to all the kids who were prescribed medication they never should have been offered and ended up worse off because of it, shout out to the kids on medication who love their meds, shout out to the kids on medication who still tic because suppressing and managing isn’t the same thing as curing

Shout out to the kids with 504s and IEPs, and shout out to all the kids who live in a school district that won’t acknowledge them, shout out to the kids who can’t afford a diagnosis, shout out to the kids whose parents don’t believe them when they say they can’t help it, shout out to the kids who made their parents listen

Shout out to the kids who have to educate others every day of their life, to the kids who have to explain their disorder to every substitute so they don’t get yelled at, to the kids who are raising their voices and forcing the world to take note, and shout out to the kids who are shy or timid, to the kids who would rather blend into the background and not have to fight to be accepted.  

Shout out to the kids who laugh at their own tics, who cry about their tics, the kids who hold it all in until they explode at the end of the day and the kids who just let everything flow and don’t care who sees.  Shout out to the kids who struggle to get by, and shout out to the kids who are living well, and shout out to all of you living in between.  

Shout out to all my fellow Tiquers out there, the ones that have Tourette’s and the ones that Tourette’s is trying to take–you are strong and beautiful, and every day that you get through, no matter how difficult, no matter how strenuous, is a day that you become stronger and more vibrant.  There’s no wrong way to have Tourette’s, there’s no wrong way to respond to your overactive nervous system, you are doing you, and the you you are doing is perfect just as it is.  I believe in you, and you should believe in you too.

I am here for the kids who tic

A List of Things People Will Say to you When you Have Tourette's

     I love it when people ask me questions about my disorders.  After all, Tourette's and Fibromyalgia aren't exactly common, and I know how important it is to teach people about such things--if you destroy ignorance today, it could save a life tomorrow.

     So when people work up the courage to ask about how things work or feel, I'm almost always thrilled!  I love teaching, I love learning, and I love open, fearless discussions about the realities of life, peeling back the layers of stigma and ignorance that do nothing but fester when left opaque and undiscussed.  Transparency, in this case, is a good thing.

     But there are certain things that are said to someone with Tourette's that don't fill me with the warm fuzzies, things which are best left unsaid.  While I'm glad that I was able to address some of the things that have been said to me before they reached the ears of anyone else in the same boat, I'd appreciate it if anyone reading this didn't make the same mistake--unless, of course, you put them in the mouths of your characters, in which case it might add a touch of realism to the story.

• "What's that disease you have?  Can I catch it?  Is it safe to drink this?"
   

       Tourette's is NOT a disease.  It's a Syndrome, a disorder, a disability, but it's not a disease or an illness, a virus or bacteria or infection.  It cannot be caught or contracted, and the worst you'll catch if you drink from my water bottle is probably a sore throat.  

  
  

   

• "Have you tried medication?"
  
  

       Yes, actually, I have.  But as I've mentioned in other posts, due to low visibility and nil fatality there aren't any medications designed specifically for Tourette's Syndrome; the best you'll find are seizure medications, many of which can be very cognitively suppressant and/or harmful to your heart.  Clonidine is just about the only medication that does neither, but it's used primarily to treat ADHD, and didn't help me at all.

       The problem with this question is multifaceted; firstly, it implies that neither I, nor my family, nor the myriad of doctors I've been to have ever considered looking into medication.  Unless you're a homeopath, trust me when I say that medication is the first thing you think about when you're diagnosed--sometimes before you're diagnosed!  The better question would be "Does medication work?," the answer to which would be no, most of the time it doesn't.
  
       The second problem with this question is that it implies that medication is necessary.  For something like Tourette's, medication can sometimes help manage tics, yes, and if you have very severe tics or a particularly misunderstanding set of peers it can put you in a much greater sense of comfort.  But because it isn't deadly, there isn't a driving need to use it if you don't want it, and most people who ask this don't really care about the comfort of the afflicted individual--they care more for their own comfort and sense of worldly normalcy.
  
• "Can't they put you in a coma?"

       People have said this to me.  Please, take a second to think about this; human beings have approached me, called me by name, and very openly and genuinely asked me if (or told me that) a medically-induced coma could be a solution.  I honestly don't know where this comes from--what would that solve?  What would it change?  I think it just links back to the prioritizing of one's own comfort above the comfort of the afflicted individual, but to a new kind of extreme--imagine if you started coughing and someone came up and told you that your cough was so annoying that you needed to be locked in a closet for an indefinite period of time.  Yeah.  Not a great feeling.  

• "I wish I had Tourette's!"

      No.  No you don't.  You really, really don't.  You don't want the stares you'll get in public, or the ableist comments from your peers, the cruel nicknames people think are funny, or the way half the population doesn't even believe that what you have is real.  You don't want the loss of bodily autonomy or the mental illnesses that usually come hand-in-hand, and you absolutely do not want to be yelled at by police officers in the driving rain, or teachers who tell you you're lying when you try to explain yourself, or substitutes that were never told about your condition.

       You just really don't want this, so don't act like you do.  I know you mean well, but you clearly have not thought this through.

• "If I had Tourette's I'd swear all the time!"
  
       Well yes, maybe you would.  Or maybe you wouldn't have coprolalia at all, like ninety percent of people with Tourette's Syndrome.
  
       I'm also often asked if I ever swear on purpose and use my Tourette's as an excuse, and the answer is always no.  Yes, I swear, and yeah, having coprolalia has made me pretty callous about it--if I'd continued to care about it after it started I'd be in a pretty bad place, so the best thing for my own mental health was to embrace the practice and take a little control back.
  
       But never once have I used my Tourette's to excuse my own words.  When you have Tourette's, there's a separation that happens in your mind.  You delineate between "Me" and "It;"  Me and It are always battling for control over mouth and body, and you feel the need to protect the Me, to take credit where credit is due.  You learn not to feel pride or shame for what It does, and instead focus your energies on how Me functions.
  
       I cannot control it when It swears at my teachers, but I CAN control it when Me swears at teachers, so Me keeps its mouth shut where applicable; I've had tics that keep me from talking and tics that keep me talking, so when dealing with Tourette's silence is as much a weapon as speech.
  
• "You're just faking."
  
       Also, see; "Tourette's is fake" and "Stop it anyway" and "No you don't" for varying degrees of ableism.
  
       This is one of the worst things you can say to someone with Tourette's--or any disorder, disability, or illness, really. With Tourette's it often connects to the comments above--people are only faking so they can swear, after all, never mind that tons of children are injured by or beat up for tics every day that have nothing to do with cursing.  Tourette's is hell enough without the disbelief that accompanies it.
  
       I've also been told stories about kids that were faking it, like it hurts my case to have someone else screw up--not that I know they screwed up in the first place.  The story I best remember is one in which my sister-in-law's stepfather walked in on some of his students talking about how "awesome" it was they got to swear in class, at which point he told them that if they ever swore in his class again they'd see their comeuppance.
  
       My question, of course, is how does he know they weren't just trying to make the best of a bad situation?  That's kind of the status quo of the disabled.  "Look at this awful thing I have to deal with!" we say, and everyone says "Shut the fuck up you whining loser!"  "Well I guess at least I don't have to do gym anymore," we mumble, curling up into a ball.

• "You don't know what it's like to lose control of your life!"
  
  
       Of all the things that people have said to me over the years, I think this one is probably the one that pissed me off the most.  A girl I had known for years turned to me in the lunch line and said this to my face.  
  
       No, I don't know what it's like to lose control of your life.  I mean, I can't control what my arms and legs do, I never know what my mouth is going to do next, my emotions might as well be tied to the movements of the Earth around the sun and the moon around the Earth, I had to give up almost half my personality in response to and in order to cope with my disorders, and for two years I had to give up my personal passions because it was too exhausting to try to juggle Tourette's, Fibro, and plays, but yeah, no, I have no idea what it's like to lose control over my life.  None whatsoever.
  
       Never fucking say this to anyone with a disorder.  Never.  
  
  
  
  
       So there's a list of a few things people might say to you when you have Tourette's.  If any of my fellow Tiquers have anything they'd like to add or share, or if anyone has any questions, feel free to comment!   I'd love to hear your stories and answer your questions.
  
       If there's anything you've thought about saying to someone you know or any questions you've thought about asking, and you aren't 100% certain that it's appropriate to ask them, don't be afraid to send me a message instead, especially if the two of you aren't that close, and I'll try to be gentle with you no matter the outcome.  I'm not trying to dissuade you from sating your curiosity, but I am trying to protect other Tiquers from the damages of thoughtlessness and ignorance.  

How To Write Tourette's, Part Two: Character Basics

     Characters with Tourette's Syndrome are uncommon, but as our understanding of the disorder increases and awareness spreads, we're finding that it's more commonplace in real life than previously thought.  As I mentioned in this post, there the numbers were once as low as one in every thousand children, some think that the statistics might actually be one in every hundred.  As the prevalence rises irl, why shouldn't it rise in the media?

     So let's talk shop.

     How do you design a character with Tourette's?  Start with a character without Tourette's.  The disorder has a typical onset of age 7-12, but the full range extends further, and there is no "typical" case of Tourette's.  Regardless of the age, your character existed before the Tourette's, even if only in an infantile stage.  They had likes, dislikes, interests, hobbies, skills, a personality--before the Tourette's, your character was a whole person.

     Take a minute to think about how old your character was when their tics started, and what they were like before the onset.  Make a list of the things they enjoyed, the things they hated, and what they felt--their relationships, their background, their passions and opinions and lifestyle.

     Miribeth Cumberbatch, a girl in my current WIP, is an athletic teenager with a passion for body-building.  She loves to read and does fairly well in school.  She's always had trouble making meaningful connections with kids her age and tends to spend a lot of time with her mothers.  Until moving to Niloh, Miribeth never really questioned the state of the world--like many teens, she took things as they were and dealt with what problems she needed to on a day-to-day basis.  She has very few strong opinions and always tries to find the path of least resistance and lessened conflict when she can; her muscles are just for show.  Her family is poor, so she likes to do for others (in a non-monetary fashion) and she feels particularly protective of her mothers, feeling that they work hard enough to provide her with what they can.  Thus, when she senses that something would inhibit plans they're excited about or limit the options available to them, Miribeth tends to omit, stretch the truth, or outright lie.
     And she also has Tourette's.

     Reading that passage isn't terribly important, so don't feel bad if you tl;dr-ed it; the important part lies in the fact that there's a lot of shit up there, and her disorder takes up the line at the end.  Am I saying it's not a part of who she is?  FUCK no!  It colors every part of who she is, but people have a tendency to start with a disorder (or a phobia/sexuality/etc. etc.) and do the rest later, which often ends in disaster.  Maybe you already have a firm handle on CREATING the characters and you just need help doing the actual nitty-gritty shit, in which case just skip down a bit, no one told you you had to read the whole article.  But please don't just ASSUME you're one of those people, either.  If you have trouble writing/have never written a character with something "different" about them before, at least try it this way once.

     "Okay Maggie, I have my character.  Now what?"  Now you start to "filter in" the disorder.  How old was your character when they began experiencing tics?  What about when they were diagnosed?  The younger your character is when they start experiencing tics, the more used to them they're likely to become--but the less accepting their classmates are likely to be.  Depending on the child and the parents, it can also be much harder for the parents to understand that what's happening to their child isn't voluntary; young children aren't as capable of explaining to their parents that they're not in control of what their body is doing, and since many young children will lie about anything they think they can get away with, it can be hard for parents to believe it even if the child manages to express the sentiment coherently.

     When children begin onset at older ages, however, it can be seen as a purposeful attempt at being contrary, particularly if the children have contrary personalities.  Some parents don't believe in Tourette's, or will never be able to admit that something is happening to their child, but I'll touch on parental impacts later.

     The larger the gap between onset and diagnosis, the more emotional damage the child is likely to suffer at the hands of the disorder and those around them.  Without a diagnosis the child might be scared (or even terrified!), uncertain, and try to repress their tics, which rarely works and is extremely painful to do.  The child may be afraid that other people might notice, and when people do notice they're not likely to immediately react with understanding--most people don't know anything about Tourette's.

     In the time between my onset and diagnosis, I remember being terrified every time I went to play practice, afraid that someone would notice the way my neck twitched and that I'd be thrown out of the play and never allowed to act again.  I was afraid that the people I considered stage friends would think I was a freak and never talk to me again, or worse, ridicule me for something I had no control over.  I still remember crying in the bathroom of the church basement one day during a water break because we were trying to dance and I couldn't keep my head still, and I was one hundred percent convinced that I'd be found out.

     If your story involves your character at a young age, these may be experiences you'll want to touch on, but you'll want to consider them even if the character is older.  The things that other children (and parents!) do and say when you're in such a fragile state can be more adhesive than hot glue, and they can affect the future behaviors and decisions of your characters.  For instance, Miribeth's onset was at the age of seven, and her diagnosis at the age of nine.  Her tics were mostly mild, but her teachers were convinced that she was a defiant little shit, so her classmates teased her and made fun of the noises and the faces she made.  This is part of the reason that Miribeth has trouble forming deep bonds with kids her age--she can't forget that some of her classmates would call her the Grinch or ask her where her owner was when she barked, and teachers make her nervous because she had too many of them say the wrong things and ask the wrong questions.

     After diagnosis, things are different depending on the school, the parents, the teachers, the student--just as in all things, the variables make a difference.  I've also found that emotions concerning Tourette's are often in flux; the child may come to terms with their affliction following diagnosis, but they'll have days when all they can do is cry, days when they want to hit people and scream at the world, days when all they want is to be left alone or else held close--it can be an isolating experience, and it can make a child feel like a monster, or like they're broken.  Children can learn to accept their disorder and to love themselves, Tourette's and all, but it is an uphill climb, and even once it evens out, the occasion rainstorm can send you sliding right back down to your last campground, especially if the terrain (ie, the variables mentioned earlier) is unforgiving.

     In the next post on the subject I'll either dive deeper into Tourette's personal impact, or talk about parent, teacher, and comrade feelings and reactions.  I'm probably forgetting things and therefore may need to revisit this later, but the best way to figure out the personal impact of Tourette's in any given situation is to consider your character's personality and/or ask someone who has it--my inbox (or the comments section!) is always open if you have any questions, and if you have friends with Tourette's they may be quite pleased to share their experiences.  If anyone has anything they'd like to add, let me know!  The comments section is always open!

Character Development: Idiosyncrasies

     People are weird.
 
     We all do weird things now and then, with or without reason, and when you get to know someone well enough, repetitions of the behavioral pattern can result in head-shaking and laughter, maybe a few, "Oh, Donald"s thrown in (unless of course their name isn't Donald, but whose isn't, amirite?).  Humans have idiosyncrasies, and they add a new layer of depth to the people around us--they can be revealing or puzzling, amusing or disgusting, frustrating or embarrassing....

     We all have them, so why shouldn't our characters?

     As I see it, there are three main types of idiosyncrasies--Reasoned, Reasonable, and Weird.

1. Reasoned:  These are the types of traits that make complete sense once you know someone's history or inner self.  Maybe someone flinches when someone tries to touch them, and once you know that the character was abused, it makes perfect sense!  Or someone is boxed in by people on all sides and runs away to cower by themselves.  Maybe they have claustrophobia, or, if they're comfortable in tight spaces, they could have social anxiety.  Reasoned Idiosyncrasies just make sense--but not until you know the person. 
2. Reasonable:  Reasonable Idiosyncrasies make sense... kinda....  These are the idiosyncrasies that don't seem to have a root cause.  They just kind of exist, yet no one really questions it too much because the behavior is within our sphere of understanding.  Maybe the character collects rocks, not because they like geology, but because they just think rocks are pretty, or they laugh when they're nervous--a pretty common "nervous tic," at least in fiction.  Many nervous tics fall under this category.  You can't explain them, but you really don't have to.  They're just there.
3. Weird:  This is the interesting one.  These are the things people do that just make no sense whatsoever, things they might not be able to explain.  Sometimes it's situational--when the guy who hit Stephen King with his van told King that his leg was probably broken in five or six places, King's response was "I'm sorry."                                                                                                                           It doesn't make sense, but it's so human, something a number of us can imagine ourselves doing.  Show of hands, how many of you apologize to people on a daily basis for things you had no control over?  Things other people did to you?  ((You can't see them, but there are so many hands up right now, I promise, just trust me.))  And have you ever just gotten up in the middle of the night to sort through your bookshelf and rearrange everything by author?  I have.                                                           Other times, it's just a person being themselves.  Maybe they suck on their middle finger as opposed to their thumb, or they always feel like they have to have exactly the right pair of pants to wear, or the day will be horrible.  Maybe they always carry around a water bottle full of mud, and they might not be able to tell you why, just that they think it could come in handy, or they mutter ancient incantations under their breath instead of curse words, or they repeat every thirtieth word two times.                                                                                                                                                        Sometimes these things can overlap with the other two--the character could be recalling that mud helps draw out bee poison, or their parents were wizards, or they might have palilalia, or any number of things.  But weird is weird, and if no one can understand it, this might be the category it fits in best.

     If your character has at least one of each of these, they're on their way toward roundedness.  Multiples of some or all of these can flesh your character out further still.  Just make sure that your character doesn't become one big walking idiosyncrasy themselves.  If your character is too weird, they might not be taken seriously.

     On the other hand, if you're writing a comedy, go for it!  Try to find a balance that works with your story and characters.  Straight-laced heroes may only have one or two of each, where the less held-together heroes (or villains) might be riddled with them.  The more you have, the more potential for silliness, or for drama, depending on what kind of idiosyncrasies you use.

     Are there any idiosyncrasies you'd like to see more in fiction?  Any you'd like to see less?  Send it my way and I'll compile a list!