I don't know if this will be interesting to anybody else, but these are my questions I do not want to forget to ask when Darcie is here. And yes, I know she is here for 12 days and I will have plenty of time to ask everything, but with the way my brain has been acting, it's best if I write everything down.
What can I do to work my bond with Owen as we are traveling during the holidays?
Where do you recommend sitting on an airplane? What can we do to make our first flight smooth?
Where should Owen stay if I am at the gym with him?
What do I do with his harness if we are going to be somewhere a long time? A movie? An airplane? A long car trip (a short one)?
How is his off leash recall?
How long is he okay to sit in class with me without needing a break? (I have a 3-hour class next semester. At night. Ugh.)
Is there a favorite treat? Favorite toy?
Things Owen really doesn't like? Foods or treats he can't tolerate?
When do we need to do our first vet appointment?
What kind of maintenance do I need to do for his harness? What happens if it breaks? Should I have a back-up vest?
Is there something I need to do for Owen when he has to walk on the snow? Musher's wax? Boots? Nothing? (Because, yeah. It snowed today. This Texas girl was not happy.)
What does Owen look like/do when he doesn't feel well?
Does he have a signal he does when he has to potty?
Everything else I think will be discussed during training without me having to worry about it now (like his tasks/commands, daily routine, etc.). I have no doubt I will have more questions as time goes on, but right now this is all I can come up with. Can anybody else think of anything I should ask?
Sunday, December 9, 2012
Thursday, December 6, 2012
Four days to go!
My thoughts are all jumbled up as I am in the final week before team training starts. I'm excited, nervous, super busy at school, not sleeping... You get the drift.
Funny enough, right now I'm trying to bring myself back down to reality. For one event I have imagined over and over again. When I get to meet Owen.
I have been excited for this dog to come into my life for over a year; he doesn't even know who I am. In my imaginary universe he sees me and is over-joyed (and I know this because he does the excited-Labrador-wiggle with his whole body). In fact, he is so excited that he needs to be reminded to be serious, because he is a service dog after all. Immediately we are best friends and our bond is unbreakable...
In reality?
I will likely be the one wiggling all over with my whole body doing the excited-Tourette's-spaz-attack. I will be the one who needs to be reminded to calm down and be serious for a minute.
Let's play a game. Let me know in the comments if you think:
(1) I will have a huge Tourette's-attack, likely combined with an anxiety attack.
(2) I will have a meltdown and start crying.
(3) I will act like a normal, rational, human being who is in control of their
emotions (ha!).
It's hard for me to picture this dog who I have been waiting for, dreaming about, imagining my new life with him, not knowing who I am. He doesn't know me from anybody else on the street. To me, he is already my whole life. But to him, I'm nothing.
I did get an email this morning from Darcie (yay!) that said she was excited about training and that Owen is ready to "belong to somebody". Service dogs are used to moving around a lot during training and working with different people, so I hope for Owen this transition is easy and our bond can form quickly.
Things I have to do this weekend?
Finish my research paper, bathe the cat, and clean the apartment.
Oh.
And sleep. :)
Funny enough, right now I'm trying to bring myself back down to reality. For one event I have imagined over and over again. When I get to meet Owen.
I have been excited for this dog to come into my life for over a year; he doesn't even know who I am. In my imaginary universe he sees me and is over-joyed (and I know this because he does the excited-Labrador-wiggle with his whole body). In fact, he is so excited that he needs to be reminded to be serious, because he is a service dog after all. Immediately we are best friends and our bond is unbreakable...
In reality?
I will likely be the one wiggling all over with my whole body doing the excited-Tourette's-spaz-attack. I will be the one who needs to be reminded to calm down and be serious for a minute.
Let's play a game. Let me know in the comments if you think:
(1) I will have a huge Tourette's-attack, likely combined with an anxiety attack.
(2) I will have a meltdown and start crying.
(3) I will act like a normal, rational, human being who is in control of their
emotions (ha!).
It's hard for me to picture this dog who I have been waiting for, dreaming about, imagining my new life with him, not knowing who I am. He doesn't know me from anybody else on the street. To me, he is already my whole life. But to him, I'm nothing.
I did get an email this morning from Darcie (yay!) that said she was excited about training and that Owen is ready to "belong to somebody". Service dogs are used to moving around a lot during training and working with different people, so I hope for Owen this transition is easy and our bond can form quickly.
Things I have to do this weekend?
Finish my research paper, bathe the cat, and clean the apartment.
Oh.
And sleep. :)
Monday, November 19, 2012
Giving Thanks
In the spirit of this week, I wanted to spend some time focusing on what I am thankful for. It is so easy when living with a disability, to get bogged down in the day-to-day doldrums. To give in and let the disability win. And I hate that part of this life; I hate that sometimes the Tourette's wins and dictates how I feel about my life. Don't get me wrong; this sucks. I wouldn't give it to anybody. But, I am thankful that I can see (with contacts), that I can hear and talk and walk.
Even when the tics make these things hard; I am still capable of doing them. Could I conceivably perceive a time when I might have to resort to adaptive equipment to walk? Sure. If my tics tried to take my legs away again, and it was beyond the scope of Owen's help, I would (begrudgingly) use adaptive equipment. Even when my tics make my eyes squint shut or make me blink so rapidly that I can't see straight, I am still capable of sight. Eventually the tics will subside and I will be able to see.
And yes, my tics have even taken away my ability to speak. I stutter due to the palalia and I have chronic aphasia that varies in severity. Some days I speak perfectly fine, and other times the words get so jumbled up in my brain that they come out in the wrong order or I use the wrong words. Or I lose vocabulary... It's good fun. But even when that happens, I can still write. I get teased about being too verbose on my blog, but it's because no matter what my brain is making me do with regards to verbal communication, I can always type and my thoughts come out just the way I want them. Now if only I had a computer that could keep up with my typing instead of eating the things I write due to hard-drive malfunctions...
I am unbelievably thankful for all of the people who donated to help me get Owen. Without your help, I wouldn't be about to embark on this amazing and incredible journey. I still can't fathom the generosity of perfect strangers. I am a cynic by nature; a pessimist if you will. I've seen the worst side of humanity due to my disability. I am slow to trust people and quick to end a relationship if I think I can't trust somebody anymore. I am cautious in public because I don't trust how anybody is going to react to me. And yet, because of my disability, I have seen the very best of people. I have had people I had no relationship to, no friends in common with, nothing, donate to help me get Owen. There was a family in contact with Heeling Allies about getting a dog for their disabled adult son and when Heeling Allies told them they didn't feel like they were the right fit, this family donated $250 to help me get my dog. Even though they were going to have to hire a private trainer where they lived to train a service dog for their son, they still donated to help me.
There have been people my mother knows through online forums who we have never met in person who have donated, collectively, hundreds of dollars.
There have been complete strangers who we don't know donate.
Teachers, with very little money themselves, have donated to help me get Owen.
I was hesitant a year ago to fundraise and ask for money; I didn't like having to ask for something, especially in so public a manner. But by doing so, I truly have seen the very best that humanity has to offer.
I am so thankful for my friends. I don't think you could understand what it means to be the friend of a Touretter unless you are one. It isn't easy.
Me? I'm used to the stares in public and the comments and everything that comes with having Tourette's. But somebody who is healthy having to deal with it too? That's asking a lot.
My friends could care less when people stare at me out in public or when people laugh or snicker or say something. They indignantly tell me that I should hit the person that is standing too close to me in line because I shouldn't have to struggle to mask my tics just because somebody has no concept of personal space. They don't mind when I make loud noises in a quiet place.
My friends position themselves on the right side of my body when walking or sitting somewhere. They do so, fully aware of the fact that by sitting or standing there, they will get hit. They do this so that I don't have to worry about hitting a stranger.
They ask me where I want to sit when we go to a movie theater. Sometimes this means sitting next to the asshole who won't stop talking the whole movie so that I can sit in the aisle.
They laughingly tell me that yes I did hit them when we were out somewhere and that is why they make sure to sit next to me.
They hear me bitch about the stuff I have to deal with, and even though they have no context for understanding my disability, they listen.
They stand up for me when somebody says something about me that they think is rude.
They look out for me; my friends have vehemently argued with me that I need to take a break, even when I am adamant that I am fine. They have covered for me at work so that I could take breaks when I needed them, even when it meant giving up some time off of their own break.
They help me keep track of my schedule when my brain refuses to remember what day it is. They laugh when I argue with them about what day my brain thinks it is, and text me reminders if I have to do something that is out of my normal schedule. They remind me when assignments are due and keep a lookout for me when my brain decides to check out for a few days.
They pick me up when they want to go out at night, because they know I won't drive if I'm tired. They drop me off at home without once expecting anything in return. And they do this without even asking.
They laugh and move things out of my way that I might knock over. They ignore the beeps and squeaks and snorts in a conversation. They don't see the tremors and eye rolling and head shaking. They accept it as part of who I am, and they don't hear or see the tics.
They never say that they are frustrated with me or embarrassed to be out with me. They simply don't see it anymore. They do what I wish everyone would; acknowledge that I have Tourette's, and move on.
And of course, I am unendingly thankful for Heeling Allies. I don't know if they will ever realize what it meant to me, a year and a half ago, to search "service dogs for Tourette Syndrome" and stumble upon their website. They have given me my hope back; hope for a normal life. Hope to be free of this chronic exhaustion and pain and fear of being in public.
Through Heeling Allies, I have met some amazing people who have received, or are about to recieve, a Heeling Allies dog. People who I know, beyond a shadow of a doubt, I will remain in contact with for years to come. (If you want to read about somebody who has been partnered with their Heeling Allies dog for a few months now, check out With Ben).
I am thankful for the opportunity I have been given. I have been given the chance to walk with a service dog, to hold my head up high and once again feel confident and safe with my body. I have met some amazing people throughout this journey, and I know I will meet a lot more. I have found my voice with regards to Tourette Syndrome awareness; a few years ago I was ashamed to admit what I have. Now I literally have the awareness ribbon tattooed on my body. It will always be a part of who I am. I am confident when speaking to groups of people about my life, and I sincerely hope that by doing so I am helping to change somebody's perspective on Tourette's.
And I hope that in a year from now I can be writing about how I am thankful for Owen; thankful for the new life he has given me; and maybe even thankful that I have a "big-girl" job.
Even when the tics make these things hard; I am still capable of doing them. Could I conceivably perceive a time when I might have to resort to adaptive equipment to walk? Sure. If my tics tried to take my legs away again, and it was beyond the scope of Owen's help, I would (begrudgingly) use adaptive equipment. Even when my tics make my eyes squint shut or make me blink so rapidly that I can't see straight, I am still capable of sight. Eventually the tics will subside and I will be able to see.
And yes, my tics have even taken away my ability to speak. I stutter due to the palalia and I have chronic aphasia that varies in severity. Some days I speak perfectly fine, and other times the words get so jumbled up in my brain that they come out in the wrong order or I use the wrong words. Or I lose vocabulary... It's good fun. But even when that happens, I can still write. I get teased about being too verbose on my blog, but it's because no matter what my brain is making me do with regards to verbal communication, I can always type and my thoughts come out just the way I want them. Now if only I had a computer that could keep up with my typing instead of eating the things I write due to hard-drive malfunctions...
I am unbelievably thankful for all of the people who donated to help me get Owen. Without your help, I wouldn't be about to embark on this amazing and incredible journey. I still can't fathom the generosity of perfect strangers. I am a cynic by nature; a pessimist if you will. I've seen the worst side of humanity due to my disability. I am slow to trust people and quick to end a relationship if I think I can't trust somebody anymore. I am cautious in public because I don't trust how anybody is going to react to me. And yet, because of my disability, I have seen the very best of people. I have had people I had no relationship to, no friends in common with, nothing, donate to help me get Owen. There was a family in contact with Heeling Allies about getting a dog for their disabled adult son and when Heeling Allies told them they didn't feel like they were the right fit, this family donated $250 to help me get my dog. Even though they were going to have to hire a private trainer where they lived to train a service dog for their son, they still donated to help me.
There have been people my mother knows through online forums who we have never met in person who have donated, collectively, hundreds of dollars.
There have been complete strangers who we don't know donate.
Teachers, with very little money themselves, have donated to help me get Owen.
I was hesitant a year ago to fundraise and ask for money; I didn't like having to ask for something, especially in so public a manner. But by doing so, I truly have seen the very best that humanity has to offer.
I am so thankful for my friends. I don't think you could understand what it means to be the friend of a Touretter unless you are one. It isn't easy.
Me? I'm used to the stares in public and the comments and everything that comes with having Tourette's. But somebody who is healthy having to deal with it too? That's asking a lot.
My friends could care less when people stare at me out in public or when people laugh or snicker or say something. They indignantly tell me that I should hit the person that is standing too close to me in line because I shouldn't have to struggle to mask my tics just because somebody has no concept of personal space. They don't mind when I make loud noises in a quiet place.
My friends position themselves on the right side of my body when walking or sitting somewhere. They do so, fully aware of the fact that by sitting or standing there, they will get hit. They do this so that I don't have to worry about hitting a stranger.
They ask me where I want to sit when we go to a movie theater. Sometimes this means sitting next to the asshole who won't stop talking the whole movie so that I can sit in the aisle.
They laughingly tell me that yes I did hit them when we were out somewhere and that is why they make sure to sit next to me.
They hear me bitch about the stuff I have to deal with, and even though they have no context for understanding my disability, they listen.
They stand up for me when somebody says something about me that they think is rude.
They look out for me; my friends have vehemently argued with me that I need to take a break, even when I am adamant that I am fine. They have covered for me at work so that I could take breaks when I needed them, even when it meant giving up some time off of their own break.
They help me keep track of my schedule when my brain refuses to remember what day it is. They laugh when I argue with them about what day my brain thinks it is, and text me reminders if I have to do something that is out of my normal schedule. They remind me when assignments are due and keep a lookout for me when my brain decides to check out for a few days.
They pick me up when they want to go out at night, because they know I won't drive if I'm tired. They drop me off at home without once expecting anything in return. And they do this without even asking.
They laugh and move things out of my way that I might knock over. They ignore the beeps and squeaks and snorts in a conversation. They don't see the tremors and eye rolling and head shaking. They accept it as part of who I am, and they don't hear or see the tics.
They never say that they are frustrated with me or embarrassed to be out with me. They simply don't see it anymore. They do what I wish everyone would; acknowledge that I have Tourette's, and move on.
And of course, I am unendingly thankful for Heeling Allies. I don't know if they will ever realize what it meant to me, a year and a half ago, to search "service dogs for Tourette Syndrome" and stumble upon their website. They have given me my hope back; hope for a normal life. Hope to be free of this chronic exhaustion and pain and fear of being in public.
Through Heeling Allies, I have met some amazing people who have received, or are about to recieve, a Heeling Allies dog. People who I know, beyond a shadow of a doubt, I will remain in contact with for years to come. (If you want to read about somebody who has been partnered with their Heeling Allies dog for a few months now, check out With Ben).
I am thankful for the opportunity I have been given. I have been given the chance to walk with a service dog, to hold my head up high and once again feel confident and safe with my body. I have met some amazing people throughout this journey, and I know I will meet a lot more. I have found my voice with regards to Tourette Syndrome awareness; a few years ago I was ashamed to admit what I have. Now I literally have the awareness ribbon tattooed on my body. It will always be a part of who I am. I am confident when speaking to groups of people about my life, and I sincerely hope that by doing so I am helping to change somebody's perspective on Tourette's.
And I hope that in a year from now I can be writing about how I am thankful for Owen; thankful for the new life he has given me; and maybe even thankful that I have a "big-girl" job.
Friday, November 9, 2012
A Week in the life of a Touretter
I imposed an interesting experiment on myself this past week. I didn't go to any Tourette's forums, facebook pages, or groups. I didn't have anything to do with the online community that encompasses the people dealing with Tourette Syndrome. It had become such a quick thing that when I checked my email, I would check my facebook and do a fast cruise through all the groups and whatnot I'm a member of. Sometimes frequenting each group more than once a day.
I very rarely posted anything unless I saw a post that I felt I had a good answer to, or something that had gone unanswered for a little while. But I did read everything.
And I got sick of reading stuff from parents. I got tired of reading how they were embarrassed when their child was saying obscenities out in public and people were looking at them like they were a bad parent. I didn't want to read anymore stories about educators failing kids with Tourette's or parents not knowing what to do or ask for. And I'm especially tired of having other people's parents give me medical advice.
Newsflash; I already have two parents.
When I post things on the groups about myself, I'm looking for support or ideas from other Touretters on how they deal with something similar. I'm not looking for a bunch of moms to urge me to go to a doctor or to seek medical treatment. And I think I've written enough here about why medical interventions are not an option I'm willing to consider right now.
But that's what happens when you post in these groups. The average age of people with Tourette's is high school aged, but the majority of members are moms of children with Tourette Syndrome and the occasional significant other of a Touretter. And that's not the group I'm looking for advice from. I make a go of it on my own for the most part, but every now and again it's nice to bounce ideas off of another adult who is living through what you are. To say, has anybody else ever had to deal with this? I don't want pity or sympathy, and I'm certainly not going to give anybody pity or sympathy.
I can't stand reading these parents freaking out because there was a glitch and all of their friends saw what they posted about having a child with Tourette's and up until now it was a "secret". I think you all know my thoughts on keeping something like this a secret.
It is not something to be ashamed about and I refuse to let anybody make me feel like it is. And I think parents who don't embrace this attitude will end up doing their children a disservice.
And while I would never say anything, because I try to be nice online, I can't stand reading posts from mild Touretters about how hard their lives are and I especially can't stand it when they all start talking about their waning periods (when their tics get better).
When I give presentations (typically in education classes at my university) I start out with giving the clinical definition of Tourette's and I always say:
Trust me, I don't want to hear about how you haven't ticced all week.
I realized the other day that while all of my posts are about living with Tourette Syndrome, in an effort to remain upbeat about my disability, I forewent actually talking about my day to day life with Tourette's. So here it is; a short glimpse into my life with Tourette's.
The other night I posted this on facebook.
"Ugh. One of the worst feelings in the world is your brain desperately sending tic messages to your body, but knowing if you tic it will cause severe pain (on top of the pain you are already in). For you neurotypical people that would be like having poison ivy somewhere on your body but not being allowed to scratch it. I can't wait to have 85 pounds of Labrador laying on top of me forcing my body to chill out."
And I got a lot of likes and positive comments and it surprised me because in that moment I was fighting my brain for control over my body and over my anxiety. That wasn't meant to be a happy post; it was me griping about my night. I was literally lying on the couch in tears because I was in so much pain (from my tics) that I couldn't stand the thought of ticcing anymore but my brain was trying its damnedest to make me tic. And yeah, I was able to stop the tics from happening, but at what cost? My anxiety went completely out of control as I was trying to stop myself from ticcing because I was anxious about the pain that would be caused if I did tic. My anxiety is already running high because of everything that is going to happen in the next month (literally, in a month, I will be done with the semester... yikes). When my anxiety is up, it doesn't take much to push it over the edge.
I have been rocking the double-wrist splint since I got back from Arizona due to the carpal tunnel syndrome symptoms in both hands. The braces help the numbness and tingling, and also force my hands to not tic so I can't make the problem worse.
I've been clicking my tongue everywhere I go.
My knees buckle without warning when I'm walking, making me stumble.
I wrenched my back so hard in class earlier this week that it still hurts.
I head bang pretty much throughout the entire day, especially in class, which is doing wonders for my already poor balance.
I have to walk around with one arm outstretched to keep me balanced and even then I stumble and trip. When I'm standing still I wobble back and forth, making it look like I'm about to fall over. So basically, I walk around looking intoxicated all day. Awesome.
And in Safeway tonight, I had an anxiety surge as I got boxed in by other people and carts trying to check out because I was petrified my brain would win and I would tic into somebody or something.
This is what the life of a Touretter is like, and that's barely the tip of the iceberg. This is what I haven't been putting on my blog for fear that it makes me seem whiny or ungrateful. But there it is, a small window into my life with Tourette's.
So what did I learn from my experiment? That I'm much happier without frequenting these groups. I don't need the added stress from dozens of other people's lives; I have plenty of my own. So for now, I'm staying off the facebook groups.
I can only anticipate that my anxiety will get worse until Darcie and Owen arrive (hopefully soon!), but hopefully I can keep it as low as possible in the interim. Right now, I'm pretending like I'm not getting on an airplane next weekend; because by now you all know how much I hate flying. : )
I very rarely posted anything unless I saw a post that I felt I had a good answer to, or something that had gone unanswered for a little while. But I did read everything.
And I got sick of reading stuff from parents. I got tired of reading how they were embarrassed when their child was saying obscenities out in public and people were looking at them like they were a bad parent. I didn't want to read anymore stories about educators failing kids with Tourette's or parents not knowing what to do or ask for. And I'm especially tired of having other people's parents give me medical advice.
Newsflash; I already have two parents.
When I post things on the groups about myself, I'm looking for support or ideas from other Touretters on how they deal with something similar. I'm not looking for a bunch of moms to urge me to go to a doctor or to seek medical treatment. And I think I've written enough here about why medical interventions are not an option I'm willing to consider right now.
But that's what happens when you post in these groups. The average age of people with Tourette's is high school aged, but the majority of members are moms of children with Tourette Syndrome and the occasional significant other of a Touretter. And that's not the group I'm looking for advice from. I make a go of it on my own for the most part, but every now and again it's nice to bounce ideas off of another adult who is living through what you are. To say, has anybody else ever had to deal with this? I don't want pity or sympathy, and I'm certainly not going to give anybody pity or sympathy.
I can't stand reading these parents freaking out because there was a glitch and all of their friends saw what they posted about having a child with Tourette's and up until now it was a "secret". I think you all know my thoughts on keeping something like this a secret.
It is not something to be ashamed about and I refuse to let anybody make me feel like it is. And I think parents who don't embrace this attitude will end up doing their children a disservice.
And while I would never say anything, because I try to be nice online, I can't stand reading posts from mild Touretters about how hard their lives are and I especially can't stand it when they all start talking about their waning periods (when their tics get better).
When I give presentations (typically in education classes at my university) I start out with giving the clinical definition of Tourette's and I always say:
To be diagnosed with Tourette Syndrome you have to have motor and vocal tics for more than 12 months. You can never go 4 weeks without ticcing. To put that in perspective, since I was diagnosed I have never gone 4 weeks without ticcing... I have never gone 4 days without ticcing. I'm doubtful I have gone 4 waking hours without ticcing. And there are some days where I don't go 4 minutes without my brain trying to make some part of my body tic.
Trust me, I don't want to hear about how you haven't ticced all week.
I realized the other day that while all of my posts are about living with Tourette Syndrome, in an effort to remain upbeat about my disability, I forewent actually talking about my day to day life with Tourette's. So here it is; a short glimpse into my life with Tourette's.
The other night I posted this on facebook.
"Ugh. One of the worst feelings in the world is your brain desperately sending tic messages to your body, but knowing if you tic it will cause severe pain (on top of the pain you are already in). For you neurotypical people that would be like having poison ivy somewhere on your body but not being allowed to scratch it. I can't wait to have 85 pounds of Labrador laying on top of me forcing my body to chill out."
And I got a lot of likes and positive comments and it surprised me because in that moment I was fighting my brain for control over my body and over my anxiety. That wasn't meant to be a happy post; it was me griping about my night. I was literally lying on the couch in tears because I was in so much pain (from my tics) that I couldn't stand the thought of ticcing anymore but my brain was trying its damnedest to make me tic. And yeah, I was able to stop the tics from happening, but at what cost? My anxiety went completely out of control as I was trying to stop myself from ticcing because I was anxious about the pain that would be caused if I did tic. My anxiety is already running high because of everything that is going to happen in the next month (literally, in a month, I will be done with the semester... yikes). When my anxiety is up, it doesn't take much to push it over the edge.
I have been rocking the double-wrist splint since I got back from Arizona due to the carpal tunnel syndrome symptoms in both hands. The braces help the numbness and tingling, and also force my hands to not tic so I can't make the problem worse.
I've been clicking my tongue everywhere I go.
My knees buckle without warning when I'm walking, making me stumble.
I wrenched my back so hard in class earlier this week that it still hurts.
I head bang pretty much throughout the entire day, especially in class, which is doing wonders for my already poor balance.
I have to walk around with one arm outstretched to keep me balanced and even then I stumble and trip. When I'm standing still I wobble back and forth, making it look like I'm about to fall over. So basically, I walk around looking intoxicated all day. Awesome.
And in Safeway tonight, I had an anxiety surge as I got boxed in by other people and carts trying to check out because I was petrified my brain would win and I would tic into somebody or something.
This is what the life of a Touretter is like, and that's barely the tip of the iceberg. This is what I haven't been putting on my blog for fear that it makes me seem whiny or ungrateful. But there it is, a small window into my life with Tourette's.
So what did I learn from my experiment? That I'm much happier without frequenting these groups. I don't need the added stress from dozens of other people's lives; I have plenty of my own. So for now, I'm staying off the facebook groups.
I can only anticipate that my anxiety will get worse until Darcie and Owen arrive (hopefully soon!), but hopefully I can keep it as low as possible in the interim. Right now, I'm pretending like I'm not getting on an airplane next weekend; because by now you all know how much I hate flying. : )
Saturday, November 3, 2012
Offensive 2.0
If you've been hanging out here for a while, you may recall an incident a few months ago (March 27 to be exact) in which I was shocked to see one of my favorite characters on one of my favorite television shows make fun of my disability.
I emailed CBS.
And I waited... and waited. And...
Nothing.
They couldn't even be bothered to send a generic, "I'm sorry you were offended," apology. Because that would have required someone somewhere to admit to guilt. To admit that they had participated in the exploitation of a disability for a few cheap laughs.
Apparently they have not gotten the message. Because this week on Elementary, a show I have been following and liking up until now, they did it again.
Made fun of Tourette Syndrome for absolutely no reason.
And I'm sick of it. Sick of being the brunt of somebody else's joke. Sick of being exploited because of a disability.
Tourette Syndrome does not give me an excuse to be, nor does it make me, rude. And for some reason, CBS is convinced that having Tourette's means that I'm rude and cannot control what comes out of my mouth. And again, I would like to point out that Tourette Syndrome means I have uncontrollable tics; it does not mean that I lack a verbal filter or am rude. And I am tired of seeing this misinformation portrayed on my television for a quick joke.
I want you to try something the next time you hear somebody making fun of Tourette's either on the television, in a movie, in person, whatever. Swap out the word "Tourette's" with any other minority group. Swap in a disability if you want. Does it sound okay if instead the butt of the joke is Autism, Down Syndrome, or hearing impairment. Does it sound okay to make fun of somebody who can't see, hear, or walk? Somebody who has different religious beliefs than you do or whose skin is a different color? Somebody whose brain, like mine, doesn't work quite right?
Oh. It doesn't. Just checking.
What I have is NOT funny. It is not a joke. And I dare anybody who thinks it is to live a day in my shoes. I'll gladly trade for a day.
As I said about 8 months ago, these things do not hurt my feelings. I could really care less; my day isn't going to be affected because oneasshole writer thinks it's funny to make a joke about living with Tourette Syndrome. Whatever. What comes around goes around.
But they do make my life harder to live. They make it acceptable to make fun of a neurological disability (I've done it now... dropped the "D-Word"). Jokes like this make it okay for the general public to make jokes about it too. And that is what I do not find okay. That a television show is - without any regard for the people who their jokes are affecting - influencing a group of people. That they are perpetrating the untrue notion that it is okay to make fun of a disability group.
Because that is what I am. A person with a disability. And when you make a joke about Tourette Syndrome, you are making a joke about a disability. Something that I, and many others, have to fight with every day just to be "normal". Just to be accepted by everyone else. And for every presentation I give, I reach 20 people. I don't even want to think of how many people watched Elementary this week.
I have to be direct and forceful when I give presentations. I took off my wrist braces this week in a class so that they could see how far back my wrists bend when I tic. And I saw a few of them attempting to twist their hands like mine, and then wincing. They winced again when I described how I wake up in the middle of the night to endless charlie horses in my legs. How I have pinched nerves. When I demonstrated how I walk on my toe joints and how I turn my ankle inside and walk on the outside of my foot.
I don't do these things to be mean or to garner pity. I do these things to counteract what the media has done. I do these things to put a picture with the phrase "Tourette Syndrome". I am brutally honest and open about my life; I want people to realize that this is not a laughing matter. I want them to realize that everyday of my life is a struggle that the majority of the population will never know. I want them to have a small glimpse into the everyday struggle I go through, so that the next time they hear the phrase "Tourette's", they think of me instead of some senseless joke.
And if that isn't enough to convince you, think about the 6- and 7-year-olds who are just finding out what Tourette Syndrome is and what it means to live this life. Think about how you would feel if somebody made fun of the one thing you were ashamed about on television. Now imagine you are in middle or high school and this happens to you.
Why do we need to make fun of a disability? Are the writers at CBS that strapped for comedic material? Or am I supposed to feel thankful because they linked my disability with a very intelligent, albiet wacky, character? I will not be as quiet this time. I am sick of this senseless attitude continuing and I will see a stop to it in my lifetime.
UPDATED to include my letter to CBS:
On this week's episode of Elementary, there was a joke made in regards to the character Sherlock Holmes having a "form of Tourette's".
As a person with severe Tourette Syndrome, I am once again, shocked that this network is exploiting a disability group for a few quick laughs.
In case you are unaware of what Tourette Syndrome is; allow me to explain it. It is a neurological disability in which my brain cannot control my motor movement or vocalizations. I have repetitive tics that occur at all hours of the day and in every situation. They have destroyed my body and cause severe, chronic, pain. I have to fight everyday to be accepted by the general public; trust me, a grown woman who looks "normal" is not accepted when she starts hitting herself, squawking, limping, or any of the other dozes of things my brain tells my body to do.
Jokes, like the one on this show, continue to perpetrate the notion that Tourette Syndrome is something funny. Something that it is okay to joke about. Just because I have Tourette Syndrome does not make me, nor give me an excuse to be, rude. By perpetrating this idea, you are making the everyday lives of people living with this misunderstood disorder more difficult.
I look forward to your response; however, I am not holding my breath.
I contacted CBS about this exact same problem in March of this year, regarding NCIS.
You can read more about my thoughts on both incidences at my blog,
Here: http://adogforkatherine.blogspot.com/2012/03/offensive.html
And here: http://adogforkatherine.blogspot.com/2012/11/offensive-20.html
I emailed CBS.
And I waited... and waited. And...
Nothing.
They couldn't even be bothered to send a generic, "I'm sorry you were offended," apology. Because that would have required someone somewhere to admit to guilt. To admit that they had participated in the exploitation of a disability for a few cheap laughs.
Apparently they have not gotten the message. Because this week on Elementary, a show I have been following and liking up until now, they did it again.
Made fun of Tourette Syndrome for absolutely no reason.
And I'm sick of it. Sick of being the brunt of somebody else's joke. Sick of being exploited because of a disability.
Tourette Syndrome does not give me an excuse to be, nor does it make me, rude. And for some reason, CBS is convinced that having Tourette's means that I'm rude and cannot control what comes out of my mouth. And again, I would like to point out that Tourette Syndrome means I have uncontrollable tics; it does not mean that I lack a verbal filter or am rude. And I am tired of seeing this misinformation portrayed on my television for a quick joke.
I want you to try something the next time you hear somebody making fun of Tourette's either on the television, in a movie, in person, whatever. Swap out the word "Tourette's" with any other minority group. Swap in a disability if you want. Does it sound okay if instead the butt of the joke is Autism, Down Syndrome, or hearing impairment. Does it sound okay to make fun of somebody who can't see, hear, or walk? Somebody who has different religious beliefs than you do or whose skin is a different color? Somebody whose brain, like mine, doesn't work quite right?
Oh. It doesn't. Just checking.
What I have is NOT funny. It is not a joke. And I dare anybody who thinks it is to live a day in my shoes. I'll gladly trade for a day.
As I said about 8 months ago, these things do not hurt my feelings. I could really care less; my day isn't going to be affected because one
But they do make my life harder to live. They make it acceptable to make fun of a neurological disability (I've done it now... dropped the "D-Word"). Jokes like this make it okay for the general public to make jokes about it too. And that is what I do not find okay. That a television show is - without any regard for the people who their jokes are affecting - influencing a group of people. That they are perpetrating the untrue notion that it is okay to make fun of a disability group.
Because that is what I am. A person with a disability. And when you make a joke about Tourette Syndrome, you are making a joke about a disability. Something that I, and many others, have to fight with every day just to be "normal". Just to be accepted by everyone else. And for every presentation I give, I reach 20 people. I don't even want to think of how many people watched Elementary this week.
I have to be direct and forceful when I give presentations. I took off my wrist braces this week in a class so that they could see how far back my wrists bend when I tic. And I saw a few of them attempting to twist their hands like mine, and then wincing. They winced again when I described how I wake up in the middle of the night to endless charlie horses in my legs. How I have pinched nerves. When I demonstrated how I walk on my toe joints and how I turn my ankle inside and walk on the outside of my foot.
I don't do these things to be mean or to garner pity. I do these things to counteract what the media has done. I do these things to put a picture with the phrase "Tourette Syndrome". I am brutally honest and open about my life; I want people to realize that this is not a laughing matter. I want them to realize that everyday of my life is a struggle that the majority of the population will never know. I want them to have a small glimpse into the everyday struggle I go through, so that the next time they hear the phrase "Tourette's", they think of me instead of some senseless joke.
And if that isn't enough to convince you, think about the 6- and 7-year-olds who are just finding out what Tourette Syndrome is and what it means to live this life. Think about how you would feel if somebody made fun of the one thing you were ashamed about on television. Now imagine you are in middle or high school and this happens to you.
Why do we need to make fun of a disability? Are the writers at CBS that strapped for comedic material? Or am I supposed to feel thankful because they linked my disability with a very intelligent, albiet wacky, character? I will not be as quiet this time. I am sick of this senseless attitude continuing and I will see a stop to it in my lifetime.
~ ~ ~ ~ ~
UPDATED to include my letter to CBS:
On this week's episode of Elementary, there was a joke made in regards to the character Sherlock Holmes having a "form of Tourette's".
As a person with severe Tourette Syndrome, I am once again, shocked that this network is exploiting a disability group for a few quick laughs.
In case you are unaware of what Tourette Syndrome is; allow me to explain it. It is a neurological disability in which my brain cannot control my motor movement or vocalizations. I have repetitive tics that occur at all hours of the day and in every situation. They have destroyed my body and cause severe, chronic, pain. I have to fight everyday to be accepted by the general public; trust me, a grown woman who looks "normal" is not accepted when she starts hitting herself, squawking, limping, or any of the other dozes of things my brain tells my body to do.
Jokes, like the one on this show, continue to perpetrate the notion that Tourette Syndrome is something funny. Something that it is okay to joke about. Just because I have Tourette Syndrome does not make me, nor give me an excuse to be, rude. By perpetrating this idea, you are making the everyday lives of people living with this misunderstood disorder more difficult.
I look forward to your response; however, I am not holding my breath.
I contacted CBS about this exact same problem in March of this year, regarding NCIS.
You can read more about my thoughts on both incidences at my blog,
Here: http://adogforkatherine.blogspot.com/2012/03/offensive.html
And here: http://adogforkatherine.blogspot.com/2012/11/offensive-20.html
Friday, October 19, 2012
And the saga continues...
If this were a love story this would be the point in which the heroine would say [dramatically]: "I never gave up hope. I knew it was him all along, I knew he would come back to me."
Figure it out yet?
Yes folks, I'm talking about Owen.
(And right now, you're going Really?! I know these things...)
Owen is 100% fine. Perfect. Ready to work.
He has gotten the go-ahead from multiple vets and I have all of the veterinary stories from the past week in my email, but I'm going to give you the short-version as I understand it.
A few weeks ago I got an email from Heeling Allies about Quincy, but also saying that Owen was not limping anymore and they were taking him to the vet. The news about Quincy was so-so (that he was doing okay, but not progressing like they wanted him to) but the news about Owen was very upbeat and unprecedented.
And a tiny seed was planted; what a story it would make if he made a miraculous comeback against all odds(!) and swooped in to save the day. And I'm not going to lie, I started to entertain those fantasies; fantastical as they were. But I didn't breathe a word to anyone.
Then, Sunday night I got an email. Much like the one I got back in August, but this one was full of good news. Great news. Owen was going to be okay.
Sunday night's email said that he had been cleared by their vet and a radiologist and that those doctors were fairly certain that there had been no ligament tear and that there would be no reason Owen couldn't be a service dog. Additionally, they told me that Quincy was not going to work out for me; he didn't have the stature or certainty to do what they wanted him to do. Owen was really the perfect match all along.
But it wasn't good enough; Heeling Allies did not want to place me with a dog they were not 100% sure would be suitable as a service dog. So they took him to an orthopedic specialist last week who looked at his x-rays and was able to say determinedly that there was no, and never had been, a ligament tear. If there had been one, even a small one, there would have been evidence of arthritis in his knee. Hooray!
They weren't through yet though. Yesterday morning Owen had a series of x-rays done under sedation on both knees to get the best picture possible and compare the knees to one another. I was told Sunday night that there were two ways this could go. One, there would be something very small they would have to fix surgically, but that would allow him to be a service dog. This option would have set us back to February so he could recover from surgery and reenter training. Two, there would be nothing wrong and we can do team training in November.
Are you excited yet? Curious?
I was on pins and needles for four days.
Yesterday morning I got the email.
OWEN IS OKAY!!!!
(That was what the subject heading was.)
His knees are totally fine. There was a tiny bit of fluid present in both knees (which is what led us down this road in the first place), but because it is present in both knees and it is so minimal, it is normal for him. There is no evidence of arthritis in his knees. Nothing.
He will be fine.
The official diagnosis of the injury is a really bad sprain and the vet recommends he be on a joint supplement indefinitely to lessen the chance of this happening again (which I was already planning on doing).
Owen will be back in training next week and we will just have to wait and see how quickly he relearns his tasks. He was on strict crate rest since the injury, but we hope he picks everything back up quickly. He was really great with all of his tasks, except picking up his leash. :)
Likely though, we are looking at team training in November, which considering it is already the middle of October, means I have about a month to start prepping and gettinganxious excited for Owen's arrival. Again.
I am really happy about this turn of events. Any dog they gave me would have been great; but... I connected with Owen automatically through pictures, before they even told me who my dog was. The first time I saw his picture on their page, I thought to myself, Wow, how lucky the person who gets that dog will be. And then it turned to, Maybe that's my dog... The things I know about Owen have made me fall in love with him more. The fact that he love-nibbles your chin when he does paws up. That he is so in-tune with his trainers that when they have to scold him for something, he makes them feel bad. The fact that he loves to swim. I cannot wait to have this huge smiley goofy dog in my life; and I'm finally letting myself get excited again after two months of trying to not get my hopes up after what happened in August.
I feel like a huge weight is lifted and I cannot wait to start this new chapter of my life.
Figure it out yet?
Yes folks, I'm talking about Owen.
(And right now, you're going Really?! I know these things...)
Owen is 100% fine. Perfect. Ready to work.
He has gotten the go-ahead from multiple vets and I have all of the veterinary stories from the past week in my email, but I'm going to give you the short-version as I understand it.
A few weeks ago I got an email from Heeling Allies about Quincy, but also saying that Owen was not limping anymore and they were taking him to the vet. The news about Quincy was so-so (that he was doing okay, but not progressing like they wanted him to) but the news about Owen was very upbeat and unprecedented.
And a tiny seed was planted; what a story it would make if he made a miraculous comeback against all odds(!) and swooped in to save the day. And I'm not going to lie, I started to entertain those fantasies; fantastical as they were. But I didn't breathe a word to anyone.
Then, Sunday night I got an email. Much like the one I got back in August, but this one was full of good news. Great news. Owen was going to be okay.
Sunday night's email said that he had been cleared by their vet and a radiologist and that those doctors were fairly certain that there had been no ligament tear and that there would be no reason Owen couldn't be a service dog. Additionally, they told me that Quincy was not going to work out for me; he didn't have the stature or certainty to do what they wanted him to do. Owen was really the perfect match all along.
But it wasn't good enough; Heeling Allies did not want to place me with a dog they were not 100% sure would be suitable as a service dog. So they took him to an orthopedic specialist last week who looked at his x-rays and was able to say determinedly that there was no, and never had been, a ligament tear. If there had been one, even a small one, there would have been evidence of arthritis in his knee. Hooray!
They weren't through yet though. Yesterday morning Owen had a series of x-rays done under sedation on both knees to get the best picture possible and compare the knees to one another. I was told Sunday night that there were two ways this could go. One, there would be something very small they would have to fix surgically, but that would allow him to be a service dog. This option would have set us back to February so he could recover from surgery and reenter training. Two, there would be nothing wrong and we can do team training in November.
Are you excited yet? Curious?
I was on pins and needles for four days.
Yesterday morning I got the email.
OWEN IS OKAY!!!!
(That was what the subject heading was.)
His knees are totally fine. There was a tiny bit of fluid present in both knees (which is what led us down this road in the first place), but because it is present in both knees and it is so minimal, it is normal for him. There is no evidence of arthritis in his knees. Nothing.
He will be fine.
The official diagnosis of the injury is a really bad sprain and the vet recommends he be on a joint supplement indefinitely to lessen the chance of this happening again (which I was already planning on doing).
Owen will be back in training next week and we will just have to wait and see how quickly he relearns his tasks. He was on strict crate rest since the injury, but we hope he picks everything back up quickly. He was really great with all of his tasks, except picking up his leash. :)
Likely though, we are looking at team training in November, which considering it is already the middle of October, means I have about a month to start prepping and getting
I am really happy about this turn of events. Any dog they gave me would have been great; but... I connected with Owen automatically through pictures, before they even told me who my dog was. The first time I saw his picture on their page, I thought to myself, Wow, how lucky the person who gets that dog will be. And then it turned to, Maybe that's my dog... The things I know about Owen have made me fall in love with him more. The fact that he love-nibbles your chin when he does paws up. That he is so in-tune with his trainers that when they have to scold him for something, he makes them feel bad. The fact that he loves to swim. I cannot wait to have this huge smiley goofy dog in my life; and I'm finally letting myself get excited again after two months of trying to not get my hopes up after what happened in August.
I feel like a huge weight is lifted and I cannot wait to start this new chapter of my life.
Wednesday, October 10, 2012
Touchy Subjects
I have this post that I add to periodically that will never - I mean never - be published on my blog. It's more of a diary than a blog post; venting when things don't go well or people say things they shouldn't. Sometimes I revisit those ideas when I'm in a better frame of mind, and some I condemn to the depths of the internet, never intended to be read by anybody.
But as people are finding my blog through google searches and posting comments, I feel like I need to address something that keeps popping up, even if by doing so I might hurt some feelings.
I'm talking about the idea of a service dog for a child with Tourette's.
Be forewarned... I don't agree with it; I don't think it is an appropriate option, and my reasoning is two-fold.
First, is the fact that I really don't feel like a service dog for a child is appropriate. A service dog is intended for the person with the disability, not the caretakers of the person with the disability. And I'm not talking about skilled companion teams where the person with the disability needs another person to help steward the dog. I'm talking about the service dogs that are carrying oxygen for toddlers (a toddler has no reason to be so independent there might be a chance of no adult supervision, especially one with a disability), the diabetic alert "service dogs" (who are really puppies and cost more than my professionally trained service dog and come with huge strings attached... but enough of that, if you're interested just start googling and you'll figure out which organization I'm talking about), and the "tether dogs" (dogs for children with Autism where the child is tethered to the dog through the use of a harness; dangerous for both child and dog and provides no training in any other coping strategies for the parents and child; what happens when the leash breaks, the child takes the harness off, the dog bolts... you get my point?).
Guide dog organizations won't provide a guide until a person is 16-years-old, and most have an age requirement of 18-years-old. This is one of the longest-used types of service dogs and the organizations have been around a long long time. There is a reason they have these guidelines in place. Personally, my viewpoint is that you should not have a service dog until you are of an age to steward (take care of) them by yourself. I think a dog for anyone under the age of 12-years-old (which is still really really young) is a waste of training time and money, and not an appropriate accommodation to use.
Now, you might say to yourself, What does she know? She doesn't even have her dog yet? And you would be right, I don't know what it is like to walk with a service dog yet. But I have been researching everything I can get my hands on for over a year. Since before I even reached out to Heeling Allies. I've been reading news stories, joining forums and support groups, and learning as much about service dog law as I can. I join forums and don't post anything - but I read everything. At first, I thought all service dogs were great! Everyone should have one!
But... as I'm learning more and more about what my new life is going to be like, I realize that this isn't true. A service dog does not have to be your last option available in regards to mitigating your disability, but for me it is. Don't you think I would rather take a pill and be fixed? I've tried all the easy stuff and the not-so-easy stuff. I'm out of choices and options. I have nowhere else to turn. Doctors literally tell me that they have no more ideas to try. Doctors apologize to me because they are out of options. I have exhausted every viable treatment option and then some.
But, I have a host of coping strategies in place. If my dog were to be sick one day I wouldn't be lost without him. I might struggle a bit more, but I would know how to handle my disability without my service dog. These coping strategies are imperative to anybody's life with a disability. They help you interact with the non-disabled population and for somebody like me, they are the reason I am able to do things like work, attend school, and drive. Without my coping strategies in place I would drown. With or without a dog, I wouldn't be able to do the things I need to do in order to survive, in order to thrive.
My dog is not going to "fix" everything. He won't make me not have Tourette Syndrome. He won't make me not be disabled.
And I fear sometimes that when parents start looking into service dogs for their children, that this is what they are after. A fix. A chance for their child to not be disabled anymore. That is not what my dog is about. He is about liberating me from the prison that is my mind and body. About giving me the chance to not be afraid of what my brain might tell my legs or arms to do when I am out in public. About giving me the strength and courage to brave a crowded room and know that I won't hit somebody who gets too close to me. About helping me get control of my body when I start ticcing, and helping me stay safe if it is something I can't control. He won't make my tics go away or make my anxiety go away. He won't make people treat me like I'm "normal"; in fact, I am more likely to be treated as a person with a disability with a service dog than without.
For me, this is an advantage. If people view me as a person with a disability they are less likely to think bad of me (and say nasty things or try and kick me out of somewhere) than if I am a normal looking person who makes obnoxious noises or can't sit still. I'm less likely to be thought of as somebody who is intoxicated. I am more likely to be believed when I say I am a person with a disability than if I look "normal".
For a lot of people with service dogs though, they don't like this added attention. Me? I get attention whether I want it or not. At least when walking with a service dog, the attention will be on the handsome hero by my side and not my tics. Do you really want your child to be permanently labeled by everybody who sees them as having a disability?
When somebody sees me walking with a service dog, there are two things they will think. One, that I am disabled. Or two, that I am a "faker" (somebody who is scamming the system to bring their pet with them). That's it; those are the two options. I won't have the choice to try and blend in anymore unless I leave my dog at home; at least now there are times I can blend in and am not noticed.
A service dog is a lot of responsibility - and I'm not just talking monetarily, though there are a lot of expenses associated with a service dog including high quality food, equipment, supplements, grooming tools, etc. A person with pets may not view it as such a responsibility, and having grown up with animals my entire life I know full-well the amount of time a dog will need as well as the things that I will have to do to take care of him.
The things I'm not looking forward to? Having to drag myself out of my apartment with severe migraines that make me want to gouge my eyes out and bash my skull in to take him to potty. I live in an apartment complex on the second story, to take him out, I have to go with him. Even on days where I would rather do anything but leave my apartment.
I'm going to have to be waking up much earlier now, I already have my alarm go off at 6am to get to school on time (sometimes I'll hit snooze for up to an hour because my brain is not physically capable of waking up yet). I will have to factor in at least 30 minutes extra time in the morning to get my dog ready. I'm hoping he is ready to go when my alarm goes off and tries to get me up, as opposed to my cat who views the alarm going off as a signal to cuddle with me and go back to sleep. I will reinforce him trying to wake me up, but the fact is, I will be waking up earlier than I do now.
They [the people with service dogs] say that having a service dog is like having a toddler with you everywhere you go. You have to plan your day around potty breaks, bring toys and snacks, have extra "clothes", have things with you in case there is an accident (they also say that if you and your service dog haven't had an accident in public, you haven't been working together long enough... oh joy)... You get the point. It's a huge commitment.
One I am ready and willing to make. But in my opinion I don't think a child is ready to make that commitment. Until they are able to steward their dog, they shouldn't have one.
And this isn't even taking into account the trouble with having a service dog in a public school setting. It's a big fight for children who are not old enough to properly steward their dog, and schools are not willing to train and provide an aide just so the child can have a service dog. Students are much more likely to be allowed a service dog in high school when they are able to take care of them themselves.
My service dog is so that I can be independent. Not so that anybody else in my life can have it easier. This is the difference in my mind; a parent wanting a service dog for their child will be the one in charge of the dog, and yes, the dog may help the child. They may help a whole lot. But until the person with the disability is old enough to have coping strategies in place so that they aren't relying on what a dog might be able to do, and until they are old enough to steward the dog, I don't think they are old enough to have a service dog.
My second reason is that Tourette's is constantly changing. It is something that gets worse during puberty and then appears to get better. There are a lot of people who have found medications that help them or who are able to control their tics. There are even more people who have mild Tourette's and are unmedicated without the things that I have to live with (chronic exhaustion, chronic pain...). For me, this dog is my last option. If it doesn't help in all the ways I hope he will, I am no worse off than I am now. But hopefully, my quality of life greatly improves.
If your child had a chance that other treatment options would work, please try them first. I don't like medications and I know a lot of families don't choose to medicate, but seriously. My life would be a heck of a lot easier if I didn't have severe adverse reactions to medications and if the medications had actually worked.
There is nothing left for me to do. Nothing left to try. I am an adult Touretter. I truly do believe I will live with this until the day that I die. I have gotten consistently more severe as time has progressed. Yes, I am more in control of my tics than I was 7 years ago. But then, those tics were simple. Hand tremors, head banging, squeaking. Yeah, they did get extremely intense at times. But I wasn't crippled by leg cramps or giving myself concussions or constantly pinching nerves. My tics right now are destructive to my body and causing permanent problems. And there is nothing the doctors can do.
This is what led me to choose a service dog as a viable way of helping to control my disability. I am a disabled adult who has never known what it means to be a non-disabled adult. Who has never known what it means to do all the things my non-disabled peers do without fear of what my brain and body will throw at me next. I will always have these challenges to overcome, but I am at the point in my life where I am able to make this choice for myself and I am well-informed of the things I will have to do in order to make this new life feasible.
In my opinion, a child does not need this put on them. They are not ready to handle the responsibility associated with walking with a service dog and they are not capable of stewarding them by themselves. They do not need to be walking around with this permanent identification to the rest of the world that they are disabled.
Work with your child to help them be more successful in school. I wouldn't have graduated Magna Cum Laude without all of the coping strategies I have in place, sans dog. Help your child become comfortable with who they are as a Touretter and help them be confident. And then if later down the road, when they are an adult, if they are - unfortunately - in the same boat I'm in, I will be more than happy support the decision to have a service dog.
Moral of the story: Don't comment on my blog about wanting a service dog for your 3-year-old, or 7-year-old, or 10-year-old. I don't think it's a good idea.
But as people are finding my blog through google searches and posting comments, I feel like I need to address something that keeps popping up, even if by doing so I might hurt some feelings.
I'm talking about the idea of a service dog for a child with Tourette's.
Be forewarned... I don't agree with it; I don't think it is an appropriate option, and my reasoning is two-fold.
First, is the fact that I really don't feel like a service dog for a child is appropriate. A service dog is intended for the person with the disability, not the caretakers of the person with the disability. And I'm not talking about skilled companion teams where the person with the disability needs another person to help steward the dog. I'm talking about the service dogs that are carrying oxygen for toddlers (a toddler has no reason to be so independent there might be a chance of no adult supervision, especially one with a disability), the diabetic alert "service dogs" (who are really puppies and cost more than my professionally trained service dog and come with huge strings attached... but enough of that, if you're interested just start googling and you'll figure out which organization I'm talking about), and the "tether dogs" (dogs for children with Autism where the child is tethered to the dog through the use of a harness; dangerous for both child and dog and provides no training in any other coping strategies for the parents and child; what happens when the leash breaks, the child takes the harness off, the dog bolts... you get my point?).
Guide dog organizations won't provide a guide until a person is 16-years-old, and most have an age requirement of 18-years-old. This is one of the longest-used types of service dogs and the organizations have been around a long long time. There is a reason they have these guidelines in place. Personally, my viewpoint is that you should not have a service dog until you are of an age to steward (take care of) them by yourself. I think a dog for anyone under the age of 12-years-old (which is still really really young) is a waste of training time and money, and not an appropriate accommodation to use.
Now, you might say to yourself, What does she know? She doesn't even have her dog yet? And you would be right, I don't know what it is like to walk with a service dog yet. But I have been researching everything I can get my hands on for over a year. Since before I even reached out to Heeling Allies. I've been reading news stories, joining forums and support groups, and learning as much about service dog law as I can. I join forums and don't post anything - but I read everything. At first, I thought all service dogs were great! Everyone should have one!
But... as I'm learning more and more about what my new life is going to be like, I realize that this isn't true. A service dog does not have to be your last option available in regards to mitigating your disability, but for me it is. Don't you think I would rather take a pill and be fixed? I've tried all the easy stuff and the not-so-easy stuff. I'm out of choices and options. I have nowhere else to turn. Doctors literally tell me that they have no more ideas to try. Doctors apologize to me because they are out of options. I have exhausted every viable treatment option and then some.
But, I have a host of coping strategies in place. If my dog were to be sick one day I wouldn't be lost without him. I might struggle a bit more, but I would know how to handle my disability without my service dog. These coping strategies are imperative to anybody's life with a disability. They help you interact with the non-disabled population and for somebody like me, they are the reason I am able to do things like work, attend school, and drive. Without my coping strategies in place I would drown. With or without a dog, I wouldn't be able to do the things I need to do in order to survive, in order to thrive.
My dog is not going to "fix" everything. He won't make me not have Tourette Syndrome. He won't make me not be disabled.
And I fear sometimes that when parents start looking into service dogs for their children, that this is what they are after. A fix. A chance for their child to not be disabled anymore. That is not what my dog is about. He is about liberating me from the prison that is my mind and body. About giving me the chance to not be afraid of what my brain might tell my legs or arms to do when I am out in public. About giving me the strength and courage to brave a crowded room and know that I won't hit somebody who gets too close to me. About helping me get control of my body when I start ticcing, and helping me stay safe if it is something I can't control. He won't make my tics go away or make my anxiety go away. He won't make people treat me like I'm "normal"; in fact, I am more likely to be treated as a person with a disability with a service dog than without.
For me, this is an advantage. If people view me as a person with a disability they are less likely to think bad of me (and say nasty things or try and kick me out of somewhere) than if I am a normal looking person who makes obnoxious noises or can't sit still. I'm less likely to be thought of as somebody who is intoxicated. I am more likely to be believed when I say I am a person with a disability than if I look "normal".
For a lot of people with service dogs though, they don't like this added attention. Me? I get attention whether I want it or not. At least when walking with a service dog, the attention will be on the handsome hero by my side and not my tics. Do you really want your child to be permanently labeled by everybody who sees them as having a disability?
When somebody sees me walking with a service dog, there are two things they will think. One, that I am disabled. Or two, that I am a "faker" (somebody who is scamming the system to bring their pet with them). That's it; those are the two options. I won't have the choice to try and blend in anymore unless I leave my dog at home; at least now there are times I can blend in and am not noticed.
A service dog is a lot of responsibility - and I'm not just talking monetarily, though there are a lot of expenses associated with a service dog including high quality food, equipment, supplements, grooming tools, etc. A person with pets may not view it as such a responsibility, and having grown up with animals my entire life I know full-well the amount of time a dog will need as well as the things that I will have to do to take care of him.
The things I'm not looking forward to? Having to drag myself out of my apartment with severe migraines that make me want to gouge my eyes out and bash my skull in to take him to potty. I live in an apartment complex on the second story, to take him out, I have to go with him. Even on days where I would rather do anything but leave my apartment.
I'm going to have to be waking up much earlier now, I already have my alarm go off at 6am to get to school on time (sometimes I'll hit snooze for up to an hour because my brain is not physically capable of waking up yet). I will have to factor in at least 30 minutes extra time in the morning to get my dog ready. I'm hoping he is ready to go when my alarm goes off and tries to get me up, as opposed to my cat who views the alarm going off as a signal to cuddle with me and go back to sleep. I will reinforce him trying to wake me up, but the fact is, I will be waking up earlier than I do now.
They [the people with service dogs] say that having a service dog is like having a toddler with you everywhere you go. You have to plan your day around potty breaks, bring toys and snacks, have extra "clothes", have things with you in case there is an accident (they also say that if you and your service dog haven't had an accident in public, you haven't been working together long enough... oh joy)... You get the point. It's a huge commitment.
One I am ready and willing to make. But in my opinion I don't think a child is ready to make that commitment. Until they are able to steward their dog, they shouldn't have one.
And this isn't even taking into account the trouble with having a service dog in a public school setting. It's a big fight for children who are not old enough to properly steward their dog, and schools are not willing to train and provide an aide just so the child can have a service dog. Students are much more likely to be allowed a service dog in high school when they are able to take care of them themselves.
My service dog is so that I can be independent. Not so that anybody else in my life can have it easier. This is the difference in my mind; a parent wanting a service dog for their child will be the one in charge of the dog, and yes, the dog may help the child. They may help a whole lot. But until the person with the disability is old enough to have coping strategies in place so that they aren't relying on what a dog might be able to do, and until they are old enough to steward the dog, I don't think they are old enough to have a service dog.
My second reason is that Tourette's is constantly changing. It is something that gets worse during puberty and then appears to get better. There are a lot of people who have found medications that help them or who are able to control their tics. There are even more people who have mild Tourette's and are unmedicated without the things that I have to live with (chronic exhaustion, chronic pain...). For me, this dog is my last option. If it doesn't help in all the ways I hope he will, I am no worse off than I am now. But hopefully, my quality of life greatly improves.
If your child had a chance that other treatment options would work, please try them first. I don't like medications and I know a lot of families don't choose to medicate, but seriously. My life would be a heck of a lot easier if I didn't have severe adverse reactions to medications and if the medications had actually worked.
There is nothing left for me to do. Nothing left to try. I am an adult Touretter. I truly do believe I will live with this until the day that I die. I have gotten consistently more severe as time has progressed. Yes, I am more in control of my tics than I was 7 years ago. But then, those tics were simple. Hand tremors, head banging, squeaking. Yeah, they did get extremely intense at times. But I wasn't crippled by leg cramps or giving myself concussions or constantly pinching nerves. My tics right now are destructive to my body and causing permanent problems. And there is nothing the doctors can do.
This is what led me to choose a service dog as a viable way of helping to control my disability. I am a disabled adult who has never known what it means to be a non-disabled adult. Who has never known what it means to do all the things my non-disabled peers do without fear of what my brain and body will throw at me next. I will always have these challenges to overcome, but I am at the point in my life where I am able to make this choice for myself and I am well-informed of the things I will have to do in order to make this new life feasible.
In my opinion, a child does not need this put on them. They are not ready to handle the responsibility associated with walking with a service dog and they are not capable of stewarding them by themselves. They do not need to be walking around with this permanent identification to the rest of the world that they are disabled.
Work with your child to help them be more successful in school. I wouldn't have graduated Magna Cum Laude without all of the coping strategies I have in place, sans dog. Help your child become comfortable with who they are as a Touretter and help them be confident. And then if later down the road, when they are an adult, if they are - unfortunately - in the same boat I'm in, I will be more than happy support the decision to have a service dog.
Moral of the story: Don't comment on my blog about wanting a service dog for your 3-year-old, or 7-year-old, or 10-year-old. I don't think it's a good idea.
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