Tuesday, August 28, 2012


In case you were wondering where you insensitive pins on pinterest about Tourette Syndrome go, it was me.  (Similarly, if you were wondering who reported you or your page on facebook, it was me again!)  I have no problem reporting or blocking things I find offensive.

That being said, the extent that people are willing to go to just to harm others really astounds me.

Last week "trolls" got into one of the support groups on facebook.  For those of you not up on the internet lingo; a troll is a person who posts inflammatory things just to provoke a reaction from the people who frequent a forum or page.  And I really hope that there was just one person; because the thought that over 15 people on facebook joined together to harass a group of persons with a disability is unthinkable.  But to think that one person made over 15 facebook accounts under strange names each with profile pictures and the like, just to harass people on a support page is just as unthinkable.

I caught the tail end of what happened; it wasn't a page I am a member on, truthfully because it is not a page that was well monitored.  The pages I belong to all have admin and you have to get approved to be a member.  By looking at my facebook, you can see that I am a real person, I don't just have just one photo up, and that I talk about Tourette's.  Having open groups is asking for trouble; especially when it is a group of people looking for support for a disability with a horrible stigma attached to it.

I did my part though, spending about 30 minutes combing through posts and blocking/reporting people.  By the time I joined in, most of the troll accounts had been blocked, but the things that were still there really disgusted me.  I can't comprehend why somebody would want to say those things; how insecure about your own life you would have to be to make inappropriate jokes about tics in ... "interesting" places (use your imagination), or to harp on coprolalia like swearing uncontrollably is some kind of joke.

And I understand why it happens.  On the internet you can be anonymous, I can say whatever I want to and not get reprimanded.  Especially if I am using a fake account with a fake email address.  Eventually, a line is crossed and some action can be taken, but simply harassing somebody online normally isn't enough.

When I see things like what happened, it doesn't affect me.  I can't imagine how insecure and pathetic somebody must be before they decide to degrade somebody with a disability; why should I let the actions of people like that affect my attitude?  However, when I read horrid things like that, I imagine how I would have felt (and did feel) at 15-years-old when I was just diagnosed and terrified of my own body.  How a kid who is still struggling with their diagnosis would feel if they read those things.  And that makes me mad; you aren't just picking on a group of adults.  They were picking on a group of people with disabilities, many of whom have comorbid conditions that affect their processing abilities and emotions.  A group of parents with children who have a disability from which there is no cure, and a group of people who are trying to find some solace in the internet from the nasty things people say about us in public.

Parents; if you have a child (disability or not) on the internet you need to monitor what they are doing.  People say things on the internet that they would never in a million years say to somebody's face.  When you remove the need to have a face-to-face conversation, people lose control.  You should know what your kids are doing and be vigilant.  In my opinion (take it or leave it), 12/13 years old is too young to be on facebook.  Too young to be on forums that aren't closely monitored by either a parent or an administrator. 

Know what to do if you see bullying going on.  If it is directed towards you (or your child) you can take a screen-shot of the page and then block and report.  If the powers that be decide that what was said isn't bad, nothing will happen.  But if enough people report something, or if what was said was really bad, people can have accounts frozen/revoked.  And if you are abusing the privileges of a community you deserve to have those privileges revoked.  If it is something going on within a school, bring it to the principal's attention (this is why it is important to take a screenshot, because if somebody removes a status you won't be able to find it again).  Schools should have rules and consequences regarding cyber-bullying, and if they don't they need to.

Personally, I think that if somebody is hell-bent on bullying and harassing online, they should have internet service frozen.  Do it enough times, and their contracts should be dropped.  I don't know why we allow things to happen without consequences.  Facebook should be able to see the IP address accounts are being created from, and stop them if it is shown that a certain IP address continually gets reported.

And if it is your child who is saying these things?  They don't need the internet.  Simple as that.  For schoolwork, they can do it with you online.  Things like facebook are a privilege, not a necessity.

If you are the one saying these things, re-pinning these things, whatever, evaluate your own life.  What is so horrible with your life that the only way you can feel better about yourself is to make other people miserable?  Because it must be a doozy if you feel the need to bully a group of disabled people.

Even the things that are meant to be "funny" (i.e. "How are you disabled? Tourette Syndrome you b*tch."), I don't find funny.   The T-shirt that says "What do we want? A cure for Tourette's! When do we want it? C*nt." is vile and offensive.  Seriously, who is going to wear something like that out in public?  Here's your clue, not a person with Tourette's.  I have stayed away from this topic for a long time now, but I'm jumping in and I will try my hardest to not be on my soap box for very long.

Tourette's Guy.

He was a YouTube "sensation" when I was in high school.  This man does not have Tourette's.  And if he does, shame on him.  I have less respect for him if he actually has Tourette Syndrome than if he is just an asshole trying to be funny.  Nobody, with this disability would knowingly and willingly make fun of Tourette's in such a disgusting, blatant way.  I've only seen bits and pieces of a few videos (because I couldn't stomach more than that).  But, I've seen enough.  In my opinion, this man is one of the main reasons (if not the reason) that we have so much trouble with the "image" of Tourette's.  He made it okay to laugh at and poke fun at.  He perpetrated the stereotype that Tourette Syndrome is the "swearing disease", making everyone who does has Tourette Syndrome, coprolalia or not, embarrassed to say what they have (newsflash: only 10% of Touretters have coprolalia).

And this disgusts me.  I have to fight every minute of everyday to have a semblance of normalcy in my life.  Yesterday, I woke up and I couldn't walk because my calf muscle charlie-horsed all night.  I am limping around campus today because it still hurts to walk.  This is my life; random injuries that I can't even place what they are from anymore.  It wasn't until I started turning my foot to the inside (pigeon toed) last night instead of the outside (club foot) (both are dystonic tics), that I realized how I injured myself in the first place.  This is my life; I have so many tics that unless they cause actual, acute physical pain, I don't even register them anymore.  And that somebody spent time degrading this disability, turning it into a joke, is really disheartening.

And yes; I do report the "Tourette's Guy" pages; not that anything gets done.  I just want somebody to know that people are not content with allowing his filth to be spewed out onto the internet.

Now... That's not to say I can't laugh at what I have.  I seriously just laughed out loud when I found this on pinterest in the computer lab. 

Enjoy! :)

Cartoon Stock

UPDATE: I posted this on facebook after this post went live and I realized that if somebody didn't see it they might think I am normally this angry and "rant-y".  So, here it goes:

This week has been the week of TS injuries. Started the week with severe cramping in my lower calf muscle (due to a new dystonic tic). Finally got that worked out in time to give my self a (mild) concussion yesterday afternoon. I realize that my blog post on Tuesday [this one] wasn't in my typical style or tone of voice; I think that's partially due to the fact that I've been in pain for a prolonged period of time. I've debated editing the post or removing it because I'm not thrilled with the way it sounds, but I stand by the thoughts behind it. I wouldn't be "true" to this life if I didn't leave posts up that were influenced by frustration and pain; they are influencing factors in my life. Bullying of anybody, especially children with disabilities, is a huge hot-button issue for me. When I am a teacher, I want to work towards creating a school community where I work where the students in my class are just as accepted as their able-bodied peers. If I can stop just one student with a disability from experiencing what I did, I'll be happy. Being ridiculed and bullied for something that is 100% out of your control is unbearable, and I'm hoping I can help change the attitudes towards invisible disabilities (including Tourette's). So, I'm leaving it up and maybe one day I'll revisit the issue of bullying people with disabilities with a slightly less... frustrated point of view.  (8/30/12)

Saturday, August 25, 2012


I feel like this has become the "elephant in the blog".  If you follow me on Facebook, you have an idea of what's been going on.  I've not blogged anything since I found out about Owen, and I'm still not entirely certain what my thoughts about all of this are.  If I think about it, I still want to cry, so I'm just not thinking about it at all.

The story with Owen is this: he was limping for about a week before they took him in to the vet.  Some x-rays and specialists later, the best they can determine is that it is highly possible that he tore his cruciate ligament.  They think it is only a partial tear because he is still putting weight on the leg, but he is on crate rest and anti-inflammatories for the next few weeks to try and determine exactly what is wrong.  If it is a partial-tear, he runs the risk of tearing the ligament completely, or blowing out his other knee compensating for the injury.  There is surgery to fix a torn ligament, but there is about a 6-month recovery period.  After which it would still be uncertain about whether he would be able to do service work.

I'm sad about Owen; I've been preparing for him and been getting updates for months now.  His picture was the one on my computer, my blog... everywhere.  But... I never met him.  I only knew what they had told me about him, and for this I'm thankful.  I was already in love with Owen because of what he was being trained to do, but not because I had a bond with him.  The trainers, they are the ones who have the bond with him.  I know that Heeling Allies will do everything they can to get Owen sound again, and they will find him the best possible home whether that is as a service dog or as a pet.  They will do whatever they need to for him, and so I don't have to worry about Owen.

I am... "Sad" doesn't feel like the right word.  But "disappointed" implies that there is blame to place on somebody; and there isn't.  I'm having to change the way I have been thinking towards this semester.  Instead of getting a service dog within the first month of the semester, it is likely I won't have my new partner until the last few weeks of the semester.  And it isn't like I haven't already survived four-years of undergraduate school with no accommodations; it's that for a year I've been preparing for this.  School is tough for somebody with Tourette's, and I am thankful that my professors will be accommodating for my disability.  They are okay with me standing and pacing in the back of the classroom and leaving if necessary.  In fact, they will remind me to take breaks during classes because I will often refuse to (because something veryimportant may happen if I step out of the room for a minute).

Obviously, I wish I was going to be getting a service dog in September.  But if we are wishing for things, I wish I didn't need a service dog.  For most people, there are other options for coping with Tourette's, and so obviously, I wish that 7 years ago something would have worked.  Now, I've been screwed by so many "treatments" that it wouldn't matter to me if the doctors wanted to try something else.  I don't.

I know once classes start on Tuesday (at 8:00! ugh.) I will be busy throwing myself into my schoolwork and my new job (hopefully, I've applied to be a grad-assistant but won't find out about if I get it and how many hours until the semester starts) and I won't really have time to think about not getting my service dog soon.  I know when September 20th rolls around, it will be hard.  But, I know that school (when I'm in classes I want to be in) flies by.  I'm planning to go to my sister's Fall Family Weekend in Arizona in mid-October, and my dad is hoping to visit me the week before so I would have a "service-human" on the flight down to Arizona.  Then, it will be Thanksgiving before I know it (which is my favorite holiday) and I will hopefully be partnered with my service dog.  If not, it will happen quickly after the Thanksgiving holiday.

(I feel bad saying this, because I still feel like I've stolen this dog from another person.) Thankfully, there was another big Labrador in the program that they are "appropriating" for me.  The person they had in mind for him had to postpone their team-training by a lot of months, so he has been hanging out in training for a little while now.  This decision happened right before they would have begun his task-training, so he is a "blank-slate".  He has his basic obedience training and his public access training, so all that is left are his tasks.  Once they start working with him, they will have an idea of how long it will take him to learn his tasks and be solid in them, so after that we will be able to have an idea of when team-training will take place.

This new dog is actually related to Owen, they are cousins from the same breeder (who Heeling Allies is now working with; it's why they have so many giant Labradors!).  I have been told he has a very similar disposition to Owen, they said he is very sweet and polite.  And he looks very very cute!

So, without further ado, meet....


I am not a superstitious person, but after this experience I vow to never attempt to own anything other than black dogs.  My family has never owned anything but black dogs.  And if we attempt to, fate intervenes and we end up with a black dog.  I give up.  :)

Friday, August 10, 2012


No, I'm not being philosophical.  DREAM.  That's the name of the disability resources office on campus.  And I had my first positive interaction with them a few weeks ago.  I got my approval to bring Owen to campus (something you need if your university doesn't get any federal funding; I have no idea if Gonzaga does or doesn't, but I wanted to be safe) along with other accommodations I didn't even know I had access to.

Like flexible attendance policies.  Those words are so magical I'm going to say them again.  Flexible.  Attendance.  Policy.  Which means that if I have a migraine or am recovering from bad tics, I can email my professors that due to my disability I am missing class and it doesn't count towards my absences.  Gonzaga is strict about the absence policy and when there's only 7 people in your class, it's really noticeable when you're gone.  This policy means that even if a paper was due on a day I miss (for TS related reasons) or there was an exam, I can't be penalized for doing the work late.  Where was that four years ago?

I can also have a note taker if I want one.  What this means is that if I felt like I were unable to take notes in a class, they would ask somebody in my class to take notes for me using a carbon-copy notebook.  I don't anticipate using this; most if not all of my classes will provide guided notes and/or powerpoint presentations and if I miss something I feel comfortable asking my professors for the missing notes or other people in my class.

They also have given me additional testing time (25%) and a "distraction-reduced testing space".  Neither of these I actually anticipate using at school.  I do okay when testing in school; I can focus on one thing and manage to get it done.  It would be a bigger hassle for me to schedule a test with the disability resources office and go take it there.  But... I need these accommodations documented when I go to apply for disability accommodations for my BCBA exam next summer.  I can not sit in a room with other people for hours upon hours trying to take a test.  And quite honestly, it is more for everybody else in the room than it is for me.  It doesn't matter if I take the test in a quiet room or not, I will still tic.  But can you imagine the reactions of everybody else in the room trying to take a test if I were there squeaking and bouncing away?  In the past, I have never applied for accommodations for these types of tests (because I didn't have documentation of a need), and I tried my hardest to hide my tics.  Which normally meant finishing well before the time allotted, normally first of everybody in the room because there is only so long I can keep my body quiet.  Which led to some not so high test scores.  This time though, I will apply for accommodations.  I will appeal if they deny me and I will continue appealing until the date of the test if necessary.  If however, they refuse to give me my own testing room and if they refuse to allow Owen in the room (and allow us potty breaks if the test goes that long), I will not try to hide my tics.  They can deal with the backlash of having people unsatisfied with their testing environment.  If I follow all the rules, then it isn't my job anymore to make certain that I control my tics.

I, for the first time ever, have everything lined up to start the school year with the accommodations I need.  The disability resources office seemed totally excited about Owen and on board with anything I need.  They have told me that I can come to them with any problems I encounter; although I don't anticipate any seeing as I'm taking classes with 4 professors whom I know very well with 6 other students, whom I also know very well; all of whom know Owen is coming.  I don't know what they would do if somebody claimed they had a severe allergy; in an undergraduate program where I would actually have options for other classes, they would just move me.  But now, when I am taking such specific classes and I don't have other options, I don't know what they would do.  And I hope I don't have to find out.  Luckily for Owen and me, severe allergies or a phobia of dogs is not a reason to kick us out of a class (or anywhere for that matter).  If the allergies or phobia rise to the level of a disability, somebody has to come up with a way to accommodate us both.

~ ~ ~ ~ ~ 

There are 40 days until Owen and Darcie arrive!

Wednesday, August 8, 2012

Crawling out of my funk.

My "funk" seems to be almost over.  I have a history of situational depression and occasionally I slip back into those thoughts.  I know what to look for though, and I know what to do if I actually ever became depressed, all I've had lately have been those "funks" or moods.  Whatever you want to call them.

Just wanted to let people know that I was not still in a meltdown or freaking out or anything of the sort.

I do have updates on Owen (yay!) and my preparations for Owen, including my accommodations I get this year at school, but I'm going to address those in their own posts later this week when I have my thoughts back together and my brain functioning like it should. :)

Wednesday, August 1, 2012


I feel like a terrible blogger; I've been AWOL for a long time and while there are good reasons behind my absence, I tend to just disappear without much notice and stay quiet for a while.  My body does not do well with stress; or it does incredibly well.  It depends how you look at it.  I tend to hold it together just long enough to get through what I need to (finals, presentations, etc.) and then it crashes.  During the summer term I got migraine-sick which meant I spent more time sleeping than I did working on my school work for a week.  I then got caught playing catch-up to finish everything on time.  And I got it done; but I've spent the last week or so "sick".  I've been exhausted to the point of napping (and for somebody with sleep disturbances, napping never happens in my world), nauseous, and headachey for a week.

And all that leads to not such great thinking.  I give talks and I'm very open about my life, and a lot of times I get the response "you're so brave" or "you handle everything so well", or something along those lines.  I would never say anything in that kind of situation, but those comments make me laugh.  95% of the time, I am great with the lot I've been dealt and I'm pretty upbeat about everything, especially when I think about Owen and what my new future looks like.  But once in a while, the chronic pain and chronic exhaustion and the ticcing gets to me.  The pain is too much to deal with without medication (motrin - I don't touch anything stronger, unless we're talking about migraines) and excessive ice.  The exhaustion makes it hard to go do anything except hang out in my apartment.  And the ticcing becomes a bigger nuisance than normal.  And I get frustrated.  Upset and angry because "why can't my brain just work the way it's supposed to".  And I throw tantrums; not throw-myself-on-the-ground-tantrums, but throw things, scream and stomp my feet tantrums.  I cry.

These "pity-parties" can last a little while, a week or so, and then I get my head screwed back on straight and I figure it out, and I move on.  I couldn't tell you the last time I got in one of these funks, but I can tell you that I'm in one now.

And it's because of something I haven't talked about on this blog.  I started another blog a little while ago, but it's a "secret" blog because I haven't been promoting it (if you can find it, you can read it).  I'm sure I'll promote it once I'm not in my "funk" anymore, but right now I want it to stay just mine.  It's about my fight with my weight.  Which is something I'm not good talking about.  It makes me angry and defensive.  It makes me want to cry and stomp my feet.  For six years they [the doctors] had me on heavy-duty prescription pills.  Anti-depressants, anti-psychotics, anti-hypertensives, migraine medications, and anti-convulsants.  For six years I was on at least one medication that caused weight gain, sometimes more than one.  And these medications do permanent damage, mentally and physically.

Mentally, because each time I would resolve to eat healthy and work out and lose weight, it wouldn't matter.  I could do whatever I wanted to and the most that would happen would be that I would gain muscle mass and tone up.  I never lost weight.  Not in six years.  When that happens, and you're coping with school and work and a disability and it doesn't matter what you eat (I realize it does - but this is the thought process) because you are going to stay heavy no matter what, you eat what is easy.  Which isn't always healthy.  And you stop working out because it saves time not to.  And you pick up bad habits that are hard to change when it could matter that you're working out and eating healthy.

Physically, because your metabolism isn't a yo-yo.  It doesn't snap back as soon as you get off the medications.  It stays suppressed (or whatever you call it when your metabolism doesn't do what it should).  And then you take more pills, which screw up your metabolism more.  And then you go on starvation-diets (less than 1200 calories a day) for a while which trick your body into thinking you're starving, so it permanently messes up your metabolism.  And even when you're eating an appropriate amount and off all the pills, it doesn't matter to your metabolism because it's been permanently affected.

And as much as I try to stay away from the "it's not fair" thoughts, this is where I falter.  Because it isn't fair.  They put me on pills to try and stop the Tourette's.  And it didn't work.  No pill I took affected my tics at all.  Zip.  Zulch.  Zero.  But the pills caused permanent damage to my body and my thoughts surrounding my weight.  (Now, let's be truthful for a second - I in no way shape or form had a healthy body image before all this, but I wasn't overweight before the meds.)  And it's not fair.  That I now have to fight for my body and my health, when had the doctors left well enough alone, this wouldn't even have to be a topic of conversation.  And I'm beyond angry that they put me on migraine medication that they said was the only option that caused weight gain and now I learn that there was a side-effect free homeopathic remedy all along that, would you believe it, works

I know that there was no way of knowing that none of those medications would work, but still.  In my pity-party world, it's not fair. 

A long time ago I stopped saying "it's not fair" in regards to my Tourette's.  I'd rather have Tourette's than be an asshole, and while I think there are a lot of (read: almost all other) disabilities that are more readily acceptable in public, I am thankful I can walk and see and teach and do all the things I can do that another disability might have taken away from me.  But this weight thing, I don't know if I will ever stop thinking it wasn't fair.  Even after I've lost the weight - which I will, because I can do whatever I set my mind to - I will still be angry about the process, the years I've lost of horse-back riding and feeling fat for so many years.  I have over 100 pounds to lose to reach a "healthy" weight (based on BMI calculations) - though I'd be over the moon to lose 100 pounds, anything else would be ... icing on the cake.  :)

I have a long way to go.  And I will be talking with my doctor (ugh) when I have my physical over winter break about suggestions and options for helping, but I'm not hopeful that they'll suggest anything over eating healthy and exercising.  I know I need to change the way I think about this, but it can't happen overnight.  It's a process, one which I'm only beginning now, and one which will take a long time to accomplish.