Monday, January 23, 2012

Why a service dog?

One of the things I, and my family and friends, have been asked repeatedly is what will the dog do?

What the service dog will do is two-fold.  First, the dog will help with the anxiety component related to my Tourette Syndrome.  And second, it will help with the physical aspects.  But to explain what the dog will do, I first have to really dig into what it feels like to be a Touretter.  Explaining Tourette's to a non-Touretter is very difficult, so bear with me.

The anxiety component is very central to my life as a Touretter.  Many people with Tourette's also carry an anxiety disorder diagnosis; as do I.  Over the last 6+ years it has ranged from mild to very very severe.  Right now, I would classify it as pretty mild; most of the time.  For whatever reason, when people with Tourette's experience any emotion in excess, their tics increase.  So if I am angry, upset, or even excited, my tics will be much worse and much more noticeable.  In addition to that, whenever you get anxious your tics get worse.  There is a lot of anxiety wrapped up in having Tourette's Syndrome; I never sleep enough and I live a life of hyper-vigilance.  I am always aware of where my body is and what it is doing.  I have to be.  When I am really tired or my brain is preoccupied with something else (like being upset or anxious) I can't keep tabs on where my arms and legs and head are and because I'm not as aware, the tics will sneak in unannounced.  If I can keep tabs on where everything is, the second I get that ticcy urge, I can squash it down.  Typically I do this with a combination of mental effort and by physically restraining my body parts (by crossing my arms, sitting on my hands, twisting my legs or arms up in a blanket, etc.).  The mental part is what is hard to explain to someone who doesn't live it.  Basically, it is like having a very thin net cast around my body at all times.  I am constantly having to check that everything is inside the "net" and that it doesn't have any holes (ie. tic urges).  I always have this block up, it is why I am delayed in answering questions in conversations and I have difficulty doing things fluently at times.  Because some part of my brain, big or small, is always worried about knowing where I am in space.

If, a tic escapes (either because I'm tired or because the urge is too much to ignore), one of two things happens.  Either, I am at home or with people I know and am comfortable with and I tic and then it goes away.  If I've been suppressing for a long time, the tic might be really bad, but as long as I'm not in a socially inappropriate situation, that is normally the end with it.  However, if I am somewhere where ticcing is "inappropriate" for whatever reason (like the movies, at a restaurant, or in a class) my anxiety automatically spikes.  It is a knee-jerk reaction that I have no control over.  This is due partially to years of embarrassment and judgement about my tics, and partially because I know the cycle I can slip into.  It is very easy for my body to start ticcing and not stop for 10+ minutes.  That may not sound like a lot of time, but try shaking your head "no" as hard as you possibly can and see how long you last.  Now add in clearing your throat until you lose your voice, jumping while you head bang, and tremoring your hands.  10 minutes can feel like an eternity and then some.  Once I start ticcing, the anxiety automatically kicks in.  Once I become more anxious, the tics get worse and on and on and on.  The tic attack has to run it's course, there have been very few instances where I have been able to get control once this starts to happen.  My thoughts become so preoccupied with what my body is doing, how much pain I'm in, and how much I wish it would stop, that the anxiety increases and I become incapable of stopping the tics.

This is where the dog comes in.  Dogs are naturally anxiety reducing; they help lower people's blood pressure and help decrease stress.  So why not just get a dog as a pet?  Why spend the equivalent of a college tuition on a dog?  Because this stress cycle happens anywhere and everywhere.  In fact, I am much more likely to start this anxiety-tic cycle out in public somewhere than at home.  At home, it doesn't matter what I do; I'm not bothering anybody but myself.  But if I'm on an airplane or in a movie theater sitting next to somebody, I can't afford to lose control.  It's very difficult to explain to somebody, even people who I know, why I can look completely normal one minute and why I'm smacking them the next.  It's not because I'm violent, it's because I lose control of my arm and it happens to fly into the person next to me.  But that's very difficult to explain, especially if I am in the midst of a tic attack.  A service dog will decrease anxiety, just by it's mere presence.

But it doesn't stop there.  Just like they can train service dogs to intervene in panic attacks, they can train the dog to intervene in one of my "tic attacks".  The dog will respond to physical cues - my tics - and will step in to draw my attention away from the tics.  One reason the tics get so bad is because it rapidly and suddenly consumes my every thought.  Having a dog who is trained to get my attention when I start ticcing will help that cycle not escalate as badly.  It is the same theory that they apply when training dogs for people with severe anxiety or PTSD.  The act of having to give the dog commands in that situation will draw my attention away from the tics and onto something else.  The fact that I have a service dog, will decrease the anxiety.  And the combination of these two things will give me the control I need to get my body back under control without hurting myself.


The dog will also help with the physical aspects of my tics.  I have what are called dystonic tics.  A dystonic tic is a sustained muscle contraction.  It isn't as noticeable as a simple or complex tic because those involve lots of movement; a dystonic tic doesn't really look that bad.  It isn't just a muscle contraction though; it is a muscle contraction that twists and contorts my body in ways it was never meant to move.  It involves every ounce of strength my muscles can exert and then some.  And it can last much longer than a simple tic; I have had these tics come and go all day long with very little break in between tics.

Some of these are just painful; I twist my right hand towards the outside of my body, turning my wrist.  This hurts, but it doesn't really impact my functionality.  However, when my right foot turns perpendicular to my body while I am walking, this is much more impactful.  I have turned my foot so far around and for so long, that the bone bruise on my kneecap showed green and blue on the skin.  This makes walking nearly impossible.  When tics like this happen, and I have many of them, I am typically only left with one functioning leg, and I have to drag the dysfunctional leg around until it decides to work again.  The dog will be trained to balance (through the use of a mobility harness) in these situations, helping me to be mobile until the tic abates.

In addition to the dystonic tics, I also head bang.  A lot.  This isn't so bad when I'm sitting on the couch.  Though, even then, it can become dangerous if I tic myself off the couch or into a piece of furniture (hello concussion...).  But, when I'm walking somewhere, head banging suddenly becomes highly dangerous.  I have ticced so hard while standing up I have knocked myself to the ground, and then continued to tic on the floor, often slamming my head repeatedly into the floor.  Hopefully, this happens on carpet or around somebody who knows me and can get a blanket or pillow to cushion the tics.  When I'm walking down stairs and this starts, I have to freeze wherever I am and if the tic doesn't go away quickly, I have to sit down on the steps for fear of falling down a flight of stairs.  Because of this risk, I am always aware of where I am when I'm walking.  I have to walk down stairs with my hands gripping the rail; I can't afford to risk walking down without a rail and starting to tic.  Even then, a lot of times I have to take elevators if I can't keep my body still enough to walk down stairs.  It is so frustrating, having a body that works, but having to wait on an elevator for a single flight of stairs because I don't have enough control.  When walking on flat surfaces, I like to walk next to walls or people I know.  This way if I become unbalanced there is something (or someone) for me to touch and ground myself until the tic passes.  However, I don't always get to walk where I want.  This is where the dog will help out; it will be trained to balance in these situations so that I don't have to be constantly aware of where I am walking or afraid of going up and down stairs.  Through the use of the mobility harness and the dog, I will be able to go anywhere without fear of losing my balance so badly I fall over.  The dog will help stabilize me until the tic passes.


In addition to all these things, the dog will do a lot more.  The dog will automatically alert people to the fact that there is something different about me.  Tourette's is a virtually invisible disability.  Until I start ticcing, there is no way for anybody to know that there is anything different about me.  In crowded spaces people come up right next to me and I have even had strangers get on the same escalator step as me in crowded malls.  The second somebody I don't know gets within arms reach, my thoughts automatically go towards don't tic, don't do anything that could hit them, don't move your arms.  It is a lot like having a very very bad itch; eventually it consumes every thought until it is all you can think about until you scratch the itch.  Not having to be constantly aware of everybody around me and constantly having to keep track of where my body is would be liberating.  A Heeling Allies service dog will be trained to provide what is called a buffer space by walking and standing a small distance away from me.  This will discourage people from getting too close to me, even in crowded situations.

The dog will also be trained to do something called deep pressure.  One of the things that helps stop a tic attack in it's path is receiving tactile impact from where my body is.  I can accomplish this by physically restraining the ticcing body part.  It is difficult to explain what it feels like to not be spatially aware of your body, but it is similar to what individuals with Autism experience.  When I start ticcing sometimes I can't even figure out where my body is in space to try and get it to stop.  Having the deep pressure to relax me will help to stop the tics because I won't have to be figuring out where my limbs are, the tactile feedback will automatically alert my brain.  Receiving tactile feedback is an automatic process, for me to "find" my arms or legs and then stop the ticcing is a coping skill I have trained myself to do over time.  Deep pressure is in essence recreating the feeling you get when you get a really hard hug.  The dog will do this by literally sitting in my lap or laying on top of my body (if I happen to be on the floor).  Not only that, but it will be trained to respond to severe tic attacks, like when I knock myself on the ground, and will do this automatically without requiring a verbal command which I am often incapable of giving if the tics are that severe.


So why the service dog?  Because Tourette Syndrome is a disability with no known cause and no cure.  Because I have tried every viable medication option and then some.  Because medication isn't a choice for me.  I am still trying it and I plan to stay on top of medical advances, but the sad truth is that Tourette Syndrome isn't the disability du jour.  It's not pretty and we don't like to talk about it as a society.  We would rather imagine Touretters as being people who scream "mother f***er" in inappropriate situations while twitching, than view it as a real disability.  There really isn't that much in the way of research and we don't know much about it.  We don't know in which part of the brain it occurs, only that something in the brain has gone haywire.  And if we don't know why it is happening, it is stupid to hope that we could find a cure or even a treatment option for everybody.  What works for one ticcer may not work for another, and then with cases like mine, even after trying 4 different classes of medication (totaling to 7 different medications at varying dosages) and after trying homeopathic remedies, sometimes nothing works.  The dog will help offset the symptoms and will help me have a greater quality of life by allowing me more independence and freedom.  It will help me integrate with the non-disabled population and the hope is that over time, my tics will decrease in severity and number by having the dog to diffuse situations that can escalate.  Many of my dangerous and painful tics have arisen out of severe tic attacks; one day my hands are flying up of their own volition, and then the next day because I am ticcing so hard, I accidentally hit myself in the forehead.  Then, before I know it, that has become it's own tic and what was once not that scary, is suddenly a tic causing severe pain.  Having the dog to diffuse these bad tic attacks can help the progression of tics where they will start relatively mild and then escalate into something dangerous.

postscript:  I am working with a friend to compile a videotape of my tics to send to the director of the service dog organization and to send to the trainer so that they have a better understanding of my tics and can imitate what I do to get the dog comfortable around somebody without control over their body.  I am working closely with the director to brainstorm ideas for the dog, and will post if we come up with another idea for a task the dog can perform.


UPDATE : If you have come here by searching for a service dog for your child with Tourette's please read my post here.  This isn't all sunshine and rainbows; this is a huge decision that will change my life forever, and not all in positive ways.  Please consider what I have to say about looking into a service dog for a child.

Friday, January 20, 2012

Hit the Wall

As of noon today I had hit the wall in my all-day seminars for student teaching at school (and thank goodness this was the last seminar for a while).  It has been so long since I have been in a traditional class setting that I had almost forgotten how hard it is to sit still and attend to a lecture, especially one that is redundant and doesn't carry much new information.  The last hour today we had the lecturer reading off of powerpoint slides and handouts to us.  All the information they presented was already available to us visually; classes like this are bad for someone like me.  If I don't have to pay 100% attention to what is being said because I feel like I might miss something, my brain is much more likely to take the easy way out and stop paying attention on the lecture, leading to more tics.

All week I have had some tic outbursts in seminars, but it had been mainly workshop based with time to talk with peers and hash out ideas.  Today, due to weather and the need to cram a lot of learning into a short amount of time, we have switched to lecture-based seminars to get as much knowledge about what we are about to do in as short a period of time as possible.  Lectures have never been my strong suit; they place an expectation on participants to sit still, be quiet, and pay attention.

There is a great clip in the Hallmark movie, Front of the Class, in which Brad Cohen (a teacher with Tourette Syndrome who was named Teacher of the Year his first year as a teacher) explains to one of his students why he struggled with learning to read.  He pokes the student on the shoulders, makes loud noises, and waves his hands in front of his eyes while he is trying to read a portion of text. 

This is what it is like to try and sit still in a lecture.  I can stay in my chair and relatively quiet, but that doesn't mean that I am actually absorbing any of what is said.  Today I have had to resort to the "sneak out and go to the bathroom" coping mechanism just to get a break and be able to move around a bit and tic without disrupting those around me.  It is much harder to try and sit still after having this expectation placed on me for the last 3 days from 5 or more hours a day.  It is much harder in a situation where the people who I am in class with and the people leading the classes do not know why I can't sit still or why I keep shaking my head; it isn't because I disagree with what's being said, but that's often the impression.  Teachers who know me don't mind the constant movement because they know I can't help it; teachers and guest lecturers who do not know me do not always appreciate the movement.  The girls I have been in classes with for the last 4 years are used to the constant movement and head shaking and are okay with it (I hope); but the people in the education program who I have not had classes with because we have been in different programs still stare.

I don't receive disability services from the university for a multitude of reasons.  Essentially, by the time I realized it was something I might want to pursue I hadn't seen a doctor regarding my tics in a number of years and then with a change in funding the services that they said they could offer me (like quiet testing rooms) changed, and there was no real point in me applying.  I get by in my classes all by myself, the most I have ever asked for has been guided notes to help follow along in a lecture.  And I know that because I am not on the caseload of the disabilities resources office, I cannot demand I get any accommodations in classes.  Because of this, I work twice as hard to get by in class; a lot of times I re-teach myself material at nights and on the weekends and I have had to teach myself how to be an auditory learner over the last few years because it can be so difficult to take notes during a class.

For me, it's not as simple most days as leaving class, letting the tics out, and going back to class and being able to concentrate.  Oftentimes, the act of leaving a classroom relieves the pressure to not tic, so I don't.  As soon as I'm back in a classroom environment, all my brain can think about is don'tticdon'tticdon'ttic... and it becomes a mantra once again.  I could spend all day in the hallway not ticcing, or I can spend class in a chair trying to pay attention and absorb some information, so I do.  This combined with extra study time at home has allowed me to be successful in school.  I never use Tourette's as an excuse to not do something to the same standard as everyone else; I just have to work that much harder to keep up sometimes.

...I squawked the entire car drive home.

Thursday, January 19, 2012

Tourette's is...

Tourette Syndrome is not swearing uncontrollably.
Swearing as a tic is called coprolalia.  This affects approximately 10-15% of people living with Tourette Syndrome.  I have lived with coprolalia and I promise you there is nothing funny about saying "f***" uncontrollably in possibly inappropriate situations.  I thought I wouldn't be able to be a teacher; thankfully for me, it has been over 2 years since my last coprolalic outburst and I do not consider myself to be coprolalic anymore.

Tourette Syndrome is not funny.
Yes, I look funny at times.  Yes, I find my tics mildly humorous at times.  Yes, people with Tourette's often have a very good sense of humor.  How can you not when you make a spectacle of yourself on a daily basis, doing and saying socially awkward and inappropriate things.  However, this doesn't mean it is okay for you to laugh at my tics.  This doesn't mean that I'm okay with people making fun of me behind my back.  Yes, I have a good attitude about living with Tourettes; but there are many many days where I am in chronic pain because of my tics.  And there are even more days when I wish I had a little bit more control over my tics so I could go out to a restaurant without dropping food or a utensil on the floor or so I could be in a crowded movie theater without worrying that I would make a large noise or hit the person sitting next to me.  Losing control over your body and your words is not funny; I don't find humor in the fact that I can't walk down a flight of stairs without worrying that I could fall.  Tourette's is a disability - think about the last time you laughed at somebody with a guide dog or somebody in a wheel chair.  Laughing at a person with Tourette's is the same thing.  

Tourette Syndrome is not something you "grow out of".
Granted, there are a small minority of children who are diagnosed very young and who do "grow out of" their Tourette's when they get older.  That isn't to say though, that every person with Tourette's will get better when they get older.  Tourette's isn't something that only children have.  It is a very real neurological disorder that many adults live with.  I still curse the day that the first neurologist told my parents that there was a chance I would be less symptomatic and maybe even not tic at all as I got older.  My parents hung onto this chance like it was their last hope, and it has taken 6 years for them to come to terms with the fact that for me this is a forever disability.  The Diagnostic and Statistical Manual of Mental Disorders (DSM) IV says that you cannot have a diagnosis of Tourette Syndrome unless you were symptomatic before the age of 18.  However, there are instances of adult-onset Tourette's and even more cases where people simply are not diagnosed until they are much older.

Tourette Syndrome is not curable.
I will live with my Tourette's every day for the rest of my life.  There is no cure.  There is not even a known cause (though there are many theories).  There are medications to try, cognitive behavioral therapy, and even brain surgery, but there is no one thing that works for everybody.  And then in cases like me, sometimes even all of those things do not help.  (I have tried medication and cognitive behavioral therapy techniques, but I am vehemently opposed to brain surgery.  Maybe one day if they discover what actually causes Tourette's and they can pinpoint where it occurs in the brain, I would consider it, but now it is predominately guess work with very few people undergoing brain surgery for Tourette's and even fewer having diminished tics as a result.  No thank you.)

Tourette Syndrome is not controllable.
This isn't something I can control.  I have unvoluntary tics which means I have some degree of control over when I tic and when I don't.  This doesn't mean that I tic because I want to.  This doesn't mean I can decide not to tic one day and make it happen.  This does mean that I am lucky because instead of living on disability because I have no control over my body, I can work.  I can drive.  I can be functional.  But saying you are functional is very different than saying I can control Tourette's.

Tourette Syndrome is a disability.
My condition is covered under the Americans with Disabilities Act (ADA).  This means I can't be kicked out of a movie theater or a restaurant because I am disruptive.  This means that I can't be denied housing because I have a disability (or a service dog) and that I cannot be kicked out of housing if my tics bother those around me.  I have to adapt my life and schedule every day to make myself successful in a world that is not made for people with disabilities.  People with Tourette's are not weak, they have a disability they cannot control.  I cannot be denied a job on the basis of my disability or because I require different accommodations than most people.  The unfortunate reality is that many people living with Tourette's who ask for accommodations in the work place lose their jobs.  It is a sad world when a smoker can get 15 minute smoking breaks, but when a person with a disability asks for small breaks throughout the work day to better control their disability (and thereby increasing their work productivity) they can lose their job.

Tourette Syndrome is something that has made me stronger.
I would not give up my life as a Touretter and the tough times I have had for anything.  I am a different person today than I would have been had I not lived with a disability.  I am infinitely stronger for everything I have experienced.  I may not like to be in a store and have everybody's eyes on me, but I don't care what anybody thinks.  I don't care that I'm the center of attention and that people are staring at me.  I don't care anymore if people in my class laugh when I make loud noises or throw pens.  I can walk into a room with people I don't know and tic without minding what anybody thinks.  Of course I still try and suppress as much as I can, but that is more about protecting myself and not injuring myself, than about making people around me feel more comfortable.

Tourette Syndrome is something that teaches patience and empathy.
I have empathy; much more than I would have ever had had I not had Tourette's.  I am a better person and a better teacher for it.  I am not as quick to judge people; I don't like to be judged at first glance, so why shouldn't I afford others the same courtesy?  I know that I don't know everything that is going on in a stranger's life, and it isn't my right to know.  I know that when people are snippy that there may be something else going on in their life affecting the way they are acting and so instead of jumping to the conclusion that they are rude, I am patient because I hope that people will afford me the same luxury if the situations were reversed.  I have also had to learn to be patient with myself.  It may take me over an hour to eat a meal because I can't control a spoon the way I want to or because my head is moving too much to eat.  It may take me a long time to walk through a grocery store because only one of my legs is working in the manner I want it too.  I may hold up the line at airport security because my hands won't work long enough to pack up my computer and zip my bag.  All of these things have taught me patience; I have had to learn that it is okay to slow down some times and take longer to work things through, not because I enjoy being lazy or taking a particularly long time to do a task, but because that is the way my body is working at the moment, and I have to be okay with that.

Tourette Syndrome is what makes me the teacher I am today.
I am a better teacher for what I have lived through.  I know what it is like to not fit in and I know what it is like to not do well in class because of things outside of my control.  I know what it is like to be bullied.  I can empathize with students with Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) because I understand what it means to not be able to sit still in a class.  I get what it's like to not be able to attend to a lecture because your mind is thinking of 100 things at once.  I may not understand what it is like to live their lives or live with their disability, but living with Tourette's has taught me much more about empathizing and being sympathetic to individual student needs.

Tourette's is not something I would wish on anybody.  It is a battle every day to do simple tasks like type an assignment, read a book, or feed myself.  However, it is not something I would give up tomorrow if I could (though there are a few tics I would like rid of).  It is a constant reminder to be humble and to be empathetic in my life and my job.  I know who true friends are because they are the ones who don't mind going out with you to a restaurant when you throw utensils on the floor.  They are the ones who don't care that you hit them if you sit next to them somewhere.  They are the ones who could care less what noises I make when we're having a conversation.  And the people who don't do these things?  Well... I didn't need them in my life anyway.

Tuesday, January 17, 2012

Up in the Air

When people travel their mental checklist is fairly straightforward.

Did I bring identification?
Do I have my confirmation numbers?
Did I remember to pack everything I needed?

When I travel, my checklist is much more complex.

Did I remember my Ativan in case I have a panic attack?
I don't take it often, but being around so many unfamiliar people and on an airplane is a prime time to have a panic attack.  If I forget to bring my anti-anxiety medication, the chances of panicking go through the roof; if I remember to bring it, I probably won't have to take it.  Weird, I know.

Did I bring my mouth-guard so I don't risk breaking a tooth?
Because it's happened.  Before I got my mouth-guard (it's a heavy-duty night guard typically used for people who grind their teeth) I didn't realize the damage I was doing to my jaw and teeth.  After fracturing a tooth and nearly having to have a root canal to fix it, the mouth-guard goes with me everywhere. 

Do I have my medical identification problem in case I encounter a problem traveling?
I know it's really weird to say, but I love my medical ID card.   It has a very brief definition of what  Tourette Syndrome is, and in a very tounge-in-cheek manner states "I'm sorry if it bothers you, it bothers me more."  I haven't yet been in a situation where I have needed to use it; however, if I am in a situation where my tics get the best of me and I am incapable of verbalizing what I need (or typically what I don't need), I know I have the ID card to speak for me.

Did I book the right seat on the airplane?
I am very particular about where I sit; it's not so much to help me, I will tic wherever I sit, it is to protect the people around me, who oftentimes do not even know they are in danger.  My right arm tics much more than my left, and so I try and sit in seats where my right arm is not next to people whom I don't know. In order to accomplish this, I either have to sit on the left-hand side of the plane in the aisle seat, or on the right-hand side of the plane in the window seat. Not sitting in one of these 2 locations causes a great deal of discomfort mentally and physically, as I have to wrestle the entire flight with my body to make sure it stays where it is supposed to stay. I have on multiple occasions - before I figured out where was the most appropriate seat - hit people who I didn't know. Not only is this highly embarrassing, it's completely inappropriate behavior from a “normal” person, which I look like until I lose control of my body.
This seating requirement also goes for movies, classes, and anywhere else where I have to standing or seated next to people I don't know.  This makes me an extremely flexible person when traveling or going out. ;)

Did I bring all of my medication in my carry-on?
In addition to being a Touretter, I also have chronic migraines and I do not sleep well.  It is a constant balancing act to keep all three of these conditions in check; if one goes out of whack the others are soon to follow.  For instance, if I don't sleep well for a few nights in a row, I will tic more.  If I tic more I am more likely to induce a migraine.  If I have a migraine I don't sleep well.  (Think a really twisted If you Give a Mouse a Cookie scenario).  For this reason I always have to travel with all of my medications, if I skip some of my pills, even for one night, it can set off a chain reaction.


For me being told I need to be still or quiet (or worse still and quiet) is cruel and unusal punishment.  Traveling, a time when it pays to be still and quiet, is by this definition torture. 

When I traveled back to school this morning it was a very stressful experience.  And in some ways, a much better travel experience compared to other trips.  Tourette's builds and builds inside your body; if I suppress tics all day, they eventually have to come out.  When I'm blocking as hard as I need to to travel by myself, I don't have complete control and my arms and legs jump around a lot.  I crane my neck and clear my throat.  This goes on the entire time I'm in an airport or on an airplane.  I'm not a good travel companion and I am miserable the entire experience.  However, with Tourettes, if I "let the tics out" and have what I call a tic "attack" where I give up on blocking and express everything I need to, I will have much greater success at suppressing tics for the next hour or so.

Unfortunately, this tic attack happened today in the security line.  It was building the whole time I was stuck in line and as soon as they started trying to hurry me through the x-ray line I lost control.  I hate being the slow person in the security line, but today I had no choice.  I lost control of my hands and was clearing my throat and squeaking the whole time.  Fortunately (unfortunately?) I was traveling with my cat - good practice for when I have my service dog - and because of this I got to go through the x-ray instead of having to hold still for the whole body scanner.  The TSA agents did realize there was something wrong and I was asked by one if I was alright. 

See? Totally adorable.

It was very rough not being able to collect my things and put them back where they all belonged to leave the checkpoint and go to my gate, and it was embarrassing squeaking and ticcing and knowing I had everybody's attention within earshot.  Luckily though, that was the worst of it and while the rest of the travel day wasn't fun, it wasn't completely torturous.

Tomorrow starts classes back up again, and even though I will be student-teaching this semester, I have to begin my semester in all-day seminars this week.
See: still, quiet, and cruel and unusual punishment

One more super cute kitty picture for good measure... He's not spoiled.  I swear.

Sunday, January 8, 2012

For Teachers

One of the things I do in my life is talk in teacher candidate classes.  I have been doing this for the last 2 years and I feel it is something very important.  I did not have a good time in school; I have always gotten good grades because I work hard, but good grades does not actually equate to learning in school.  I am friends with a lot of teachers and teacher candidates, many of whom I have not had the chance to share my story with.  For this reason, (and because I have done nothing of interest over the last few days except rest and ice my neck) today I wanted to talk about what you (a teacher) can do to help a student in the classroom who you know or suspect may have a tic disorder.

Onset for me was very late in childhood, typical age of onset is around 7 or 8 and I wasn't symptomatic until 15 years old.  Because of this, I still vividly remember coming to terms with my disability and having to quickly learn to adapt to my environment in school without my grades slipping.  I can relate to kids with disabilities, not because I think I know what it's like to walk in their shoes, but because I know what it is like to not be able to attend to a class.  I know what it's like to be bullied.  I know how it feels when you catch your peers imitating you and mocking you behind your back.  I know that feeling of dread and shame when you realize you slept through a class, not because you were out late the night before, but because the medications you are on knocked you on your ass.  I can relate to all these things, and I would be remiss if I didn't use my experiences to help teachers.  I implore teachers to share this post with other teachers; if I were able to help one teacher with one child with tics in their class, sharing these sometimes painful stories is worth it.

Children with Tourette Syndrome or other tic disorders are eligible to have a 504 plan; this allows for accomodations to their schooling.   A child whose only diagnosis is Tourette Syndrome does not qualify for self-contained special education classrooms.  Tourette's does not affect intelligence; it can make it difficult to share what you know with people due to motor tics while test-taking or verbal tics while talking, but it does not affect how smart a person is.  Students with Tourette's and other tic disorders will be in regular education classrooms and it is up to their teachers to accommodate them and make them as successful as possible

The first thing to note when talking about a person with tics in any setting is that they can NOT control it.  I write and say that I have a good deal of control; but that is in no way to say that I can make them go away.  I can mask them and hide them for a time, but eventually it becomes too much to try and squash down, and the tics come out.  Most times, after trying to suppress and block for so long the tics come out stronger and longer than they would have if I just let them express when I felt the urge.  If you know somebody who has tics, please don't every say "stop that" (or any permutation of that phrase).  Trust me, a Touretter knows that they are ticcing.  They know that they are distracting people and annoying people around them.  Bringing attention to that fact and informing a ticcer that you wish they would stop is like rubbing salt in a wound.

In the classroom, it is okay to talk about it.  In fact, it is probably better if you can talk about it so that the other kids in a class realize that what that child is doing is normal.  Yes, it can be annoying sometimes, but they don't do it on purpose.  My medical ID card says on the back "I'm sorry if it bothers you, it bothers me more."  This is the attitude I try and embrace everywhere I go; I acknowledge that I can be distracting and I try not to put myself in situations where I will bother people, but sometimes that cannot be helped.  And please, don't expect me to apologize for something that is out of my control.

If you have a ticcer in your classroom who is willing to talk about it, a presentation from them will have more meaning.  If your class is very young, maybe have a parent come in and talk or talk to your class yourself.  The Tourette's Syndrome Association has resources for teachers and parents.

One of the things I vividly remember from school is planning my day around which teachers would allow me to go to the bathroom without having to ask and sign out and make a scene.  I can still tell you more than 6 years later, which classes I would leave from and which I had to sit through.  Escaping to the bathroom to "let the tics out" is a coping skill nearly every child with Tourette's develops to be able to get through classes.  Don't argue with them.  Let a child with tics go to the bathroom as they feel necessary, if they know that you won't bother them about it and they know it is an option whenever they need it, chances are the anxiety around the tics will be reduced and the tics themselves might actually become less frequent.  If you have a younger student with tics, send them on errands, even if they are pretend errands.  Have a teacher they can bring "notes" to throughout the day when you feel that their tics and/or anxiety are escalating.

Let a child with Tourettes stand up as necessary.  It is still tortorous for me in a lecture to have to sit still in a desk at times.  I used to jump as a tic (complex motor) and if I got that urge it would be impossible for me to remain sitting.  Talk with the student about what might help; if they want a desk in the back of the room so they can get up and move, please let them.  Sometimes movement is all that I need to stave off a big tic attack; I go for walks a lot during classes just to move my muscles and get my anxiety back under control.

Also in regards to seating placement, the middle of the room is the worst place to be as a Touretter.  I like to sit in the front row now because that way I can pay the most attention.  However, in the front row I know I am a distraction to everyone behind me; I just don't care if people stare or notice anymore.  When I was in high school I wanted to sit in the back of the room; this minimized the number of people exposed to my tics and made it less likely I would become a distraction.  I also try and sit near doors, this way if I have to get up and leave during a class I can do so with minimal disruption to the class.  If I'm in the back or middle of a classroom and I get the sudden tic urge to squeak or clap or something just as equally disruptive, it is much harder to leave than if I am in a seat by the door. 

Individuals with Tourette's are typically on a variety of medications.  Because nobody knows what causes Tourette Syndrome, or why it occurs, there is no blanket medication for it.  There are classes of medications to try (anti-hypertensives, anti-convulsants, anti-anxiety, etc.) but these are only a vague guideline.  Not only that, but the medications can have severe side-effects.  I stopped taking medication for 4 years because I could not live with the side-effects.  I am trying new medication now, but I have yet to find something that makes my tics more manageable, much less actually gets rid of the tics.  I slept through a good deal of class in high school because it was physically impossible for me to remain awake.  Right now as I write this I am dizzy and nauseous because I just increased the amount of medication I am on.  If you have a child with Tourette's in your classroom, understand that there is a high likelihood of them being medicated.  Medications can cause all sorts of side effects and the fact that they are lethargic all the time, that they rapidly gain weight, or that they turn into absolute crabs (a possible side effect of my medication apparently) isn't always their fault.

If you are teaching older students, all these things and more apply.  Talk to the student, if they want to be able to go to a quiet testing room, arrange it.  There is nothing that makes me need to tic more than being in a quiet room with people trying to concentrate.  If you have a student who has trouble writing, allow them to dictate their tests to somebody else or type them (writing with a pen and typing are very different processes; I can type much easier than I can write).  Make accomodations as necessary for your student so that their grades don't become reflective of their disability.

If you use notes or powerpoints in class, print out copies for your student.  Having to stay quiet in a chair without ticcing while taking notes and paying attention to a lesson is too much.  I gave up on note-taking a long time ago because my writing would be illegible, I would tear holes in the paper, and on one occasion I actually threw a pen at another student in my class.  Now, I rely on guided notes and powerpoint lectures; I will recreate the lesson at home and re-teach myself material I missed so that I do not fall behind. 

Most importantly though, talk to the student.  Their tics will dictate the accomodations they need.  Every Touretter is different and while I have tried to lay out generic guidelines, a student will know what they need.  They will know what makes it difficult for them to learn.  Please, do not hesitate to comment or contact me if you have further questions or want to know how to get the conversation started with a student or a parent.

Thursday, January 5, 2012

It's My Party and I'll Bake if I want to

Yesterday, following a many-years long tradition, I baked my own birthday cake.  Before anybody feels bad, let me explain; I love baking.  And cooking.  And anything else that allows me to be in the kitchen.  I have a terrible sweet-tooth, but if I had to choose between eating sweets and baking sweets, I'd pick baking any day of the week.  Cooking is one of the few activities that minimizes my tics; I'm comfortable in the kitchen and there's something comforting about knowing that when I combine the right ingredients in the right ratio, it will work.  My birthday is the one time I get to completely indulge; I bake whatever I want with real butter and chocolate and cream.  This year I chose to bake Smitten Kitchen's tiramisu cake (link at the bottom of the post) and it was phenomenal. 

Life with Tourette's is difficult to explain to someone who doesn't experience it on a daily basis. I can cook in the kitchen, use chefs knives, and be around boiling water and the hot stove with absolutely no tics. But, put me in a quiet room with an exam and a pencil and tell me to write an essay, and it's torture. If I weren't a teacher candidate, I would most likely be at culinary school because it is one of the few professions I could do and enjoy doing with my disability. I am thankful every day that my choices and my life experiences have led me down a path that allows me to work in a profession that I not only enjoy doing but that I can do with my disability. I would not be the same teacher I am today, were it not for my experiences both when I was growing up in school and in college as a teacher candidate. I have more empathy for my students and I understand what it is like to live with a disability, and have to work and live in a world that is not adequately set up for you. I am unendingly grateful that I did not choose to go into a job field that would require me to sit at a desk in a cubicle for hours on end. There are many adults living with Tourette's who have to work in jobs that are difficult for them to perform with the tics that they have. It would be impossible for me to work at a 9-to-5 job  sitting at a desk without distracting everybody around me.

Birthday Dinner - Me and my sister

My birthday present to myself had to do with my new medication.  Because the doctor wants to put me on such a high dosage of the medication, I have to gradually increase it; every time I increase the dose I get nauseous and dizzy for a few days.  Last night I was supposed to increase the dosage of the medication I am on, but as a birthday gift to myself, I decided to wait until tomorrow.  I am tolerating the new medication surprisingly well - in spite of the nausea and dizziness, and even though I'm not seeing any benefit from the medication yet, 2 weeks is long for me to be on a medication with no side effects.   This medicine is a pretty big long-shot, it is an anti-convulsant and not really used to treat Tourette's, but it's the end of the line for me as I have tried everything else.


Tiramisu Cake Recipe
Adaptations I made to the recipe:  I doubled the amount of espresso soaking liquid, and while the cake was pleasantly moist, I really love tiramisu and in the future might even triple the soaking liquid and allow it to soak longer. I also doubled the amount of powdered sugar in the filling\frosting after reading reader reviews. This gave me a very firm frosting that I was able to spread all over the cake with absolutely no problems.

postscript: This post was nearly ready to put up last night, but at around 8 o'clock the pinched nerve in my neck became too much to bear, and I had to put the computer away. I don't say this to inspire sympathy, but to explain one more aspect of life with Tourette's.  This isn't something I deal with on a continuous basis; it flares up relatively infrequently. The combination of many events led to the nerve in my neck getting pinched as severely as it did last night, and I don't foresee this happening again in the near future.

Tuesday, January 3, 2012

Dragon Dictate and Computer Malfunctions

 The 1st time my computer hard drive failed, we wrote it off  and said it was because the computer was  two–years–old. When the hard drive failed again six–months later, we decided we had gotten a dud hard drive the 2nd time around and replaced  it again. I am now on my 4th hard drive in a 4-year-old computer.
Because of the nature of my major in the profession and chosen to go into, I am always on the 2 computer. I have to type lesson plans, research papers, e-mails, IEPs, and a multitude of other assignments for all of my classes. If I had unlimited time to complete assignments, it might be a different story. However, when I am under pressure to complete a lesson plan or a paper by a certain time, I cannot always rely on my hands to cooperate with what I need them to do. It is not an uncommon occurrence for me while working to lose control of my hands and begin to pound on the laptop. According to the tech guys who always fix my computer, if the computer is on and you bump it, you risk damaging the hard drive. What I do is way more damaging than a simple bump to the computer. In addition to pounding on the laptop and damaging the inner workings of the computer, the computer has fallen from the couch or floor on multiple occasions when I have full–body tics and I am unable to put the computer in a safe place.
After replacing the hard drive for the 3rd time, I got Dragon dictate software. This allows me to use my computer with only my voice and not my hands, hypothetically. While it is relatively easy to type, it is a lot more difficult to attempt to edit the passage of text once I have dictated relying only on my voice. I am attempting to write this blog post completely using DragonDictate, and it is proving most frustrating. Dragon is recognizing the about 98% of the words I speak, confusing only very short words like “and” and “in”, however fixing these small words is very time-consuming with only Dragon.
Using Dragon also requires that I remember all of the available commands. As I write this, I am sitting with my cheat sheet of voice commands that came with the software; however, this is only a handful of commands and I know that there are many many more that I haven't figured out yet. I am hoping that with more practice, and when I am back home in my quiet apartment, I will be more accurate using Dragon.
Dragon does pick up the all my tics, and continually attempts to give meaning to my throat clearing and squeaks. While I find this amusing now, one of the 1st times I am using the software, I am not sure how amusing this will remain for long. I am also going to research once I finish this post getting a microphone that uses Bluetooth and doesn't need to be plugged into my laptop. This is for a couple of reasons, and for one while the microphone that came with software has a very long corridors that connect to the computer it still connected. If I were to have a full tic attack I could very easily tangle myself up in the cord, damaging either the microphone or my computer in the process. In addition to that possibility, I have a kitten who is very fond of chewing on cords and who has destroyed multiple phone chargers and computer chargers. Having a wireless microphone is probably in everybody's best interest.