Monday, January 23, 2012

Why a service dog?

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

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

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

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

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

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


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

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

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


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

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


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

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


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

12 comments:

  1. I have Tourette's, and this was interesting to read - I'm 23 and have had it since I was 8, diagnosed at 10.

    I just want to add that I sometimes try to explain the feeling of needing to do a tic as being similar, or coming from the same brain base function, as having an itch that you need to scratch, sort of a concise but not-quite-perfect descriptor.

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    1. Thanks for your reply! (I have to admit I was a little excited to see somebody else with TS commenting!)

      That is the same metaphor I use when I give presentations; either that one or the "staring contest" (where no matter how hard you try to keep your eyes open, eventually you are going to blink).

      I am getting my dog in 2 and a half months and I'm so excited for this next chapter of my life; I really think Owen is going to allow me to be more independent and less fearful of what my body will do (as well as give me the ability to pay better attention in class!). I hope you check back in to see how our progress is going. :)

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  2. I am looking forward to reading about your experiences with your service dog. My son was formally diagnosed with TS 2 weeks ago. His tics began when he was 5, he is now 9 1/2. The diagnosis came as no shock, I "knew" probably 2 years ago that this was not a transient thing for him. Anyway, I was searching for info on service dogs for TS and came upon your blog. I think as my son gets older he would benefit from one. I can see how our family pets who are not even specially trained help with his severe tics. Best of luck to you!

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    1. Thank you for your comment. I am very sorry your family is having to go through this; I can attest that it is not an easy thing to live with. While I didn't go through elementary school with TS and I've only just begun applying for services at my university so I can bring Owen when I get him, I graduated with my teaching credentials in special education in May and I present about Tourette's in the classroom, so if you have any questions please, let me know! My parents were not ready to have a child with TS (who really ever is), and it was very tough for me in school both socially and academically. Now though, I know what I am legally allowed to ask for and what all of my rights are, and I can hold my head up in classes and out in public and tic away. :)

      I am really looking forward to what my life will be like with Owen; the ability to go out in public and not fear what my body will do, the ability to actually sit still in class *and* pay attention at the same time, and I can't wait for people to stare at my giant yellow Labrador instead of my tics.

      Service dogs aren't a common thing for people with TS, and Owen certainly doesn't come with a cheap price tag, but it will be worth it to have the freedom that comes from walking with a service dog and to alleviate some of the stress surrounding living with Tourette's.

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  3. I have tourettes. I am almost 30 years old; I was diagnosed at 7. I now have a little girl who is 3, and has been showing signs of Tourettes for almost 10 months now. SHe is worse now than I have ever been even in my worse times. I have been wondering if a service dog, or therapy dog would help in getting her calm quicker. She seems to have high anxiety several times a day, and for many different causes. We are waiting for an appointment at the Tourette clinic at Toronto Western Hospital, to possibly get her diagnosed. WIth all the tics she's been doing, they seem to be increasing in number. RIght now she has about five different tics occurring during her day. I'm now doing lots of research to find out info on what type of dog would work best for her, as well as myself too. My T.S. is very mild, however, there are many bad days too. I have lots of anxiety issues, but those times seem to be invisible to others. My husband doesn't notice that much. Anyway, Thanks for putting this blog up. Looking forward to better days ahead!!!

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    1. A service dog is specifically trained to mitigate symptoms of a disability; like how Owen is being trained to help me balance when my tics make it difficult to walk or how he will give deep pressure to help me gain control of my body. A therapy dog is a dog that visits places and assists a variety of people; I think the term you are thinking of is an Emotional Support Animal. An ESA does not have to be trained, but it does not have public access. Its job is to be in the home for emotional support relating to a person's disability. Because your little girl is 3, that would probably be the choice you would have available to you now. A lot of organizations do not place dogs with children, some will place in a triad (dog-adult handler-disabled person). There is a lot of controversy in the service dog world about placing dogs with children; I'm a little on the fence.

      What it comes down to in my opinion though, is I'm getting Owen so that I can be 100% independent because I'm an adult and that's what I want and should be able to do. Children, especially before they are in school, do not need to be 100% independent. And when they are in school, you face issues with a service dog because you would have to have a one-on-one aide to take care of the dog during school hours, and from what I have heard schools do not like doing that. Especially considering, there really aren't reasons for a Touretter to have a one-on-one aide (check out my "For Teachers" post to learn about what a Touretter can and should have in school). Just some things to think about.

      Good luck at the clinic; I've had my share of doctors appointments (and disappointments) so I can empathize with what you must be going through. I, like many Touretters, have a generalized anxiety disorder. Owen isn't being specifically trained for this, though I will utilize some of his commands when I have panic attacks, and hopefully having him nearby when I start panicking will help to stop the thoughts. The way Owen will help with my anxiety is by overtime reducing the stress I feel regarding my tics, so that my overall anxiety is reduced.

      Good luck with your appointment and I hope you check in 6 weeks from now to hear how Owen and I are doing! :)

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  4. Hi and thank you so much for this blog. I have a daughter with TS. She is 13. I have also worked with other parents to for a support group for people with TS. I am interested in getting a dog for her. Can you let me know where you got yours?

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    1. Hi Kerry! I am getting my dog from an organization based in Seattle, WA called Heeling Allies (there is a link at the top of my page). I still do not have my service dog yet; I am going to be blogging about why soon, I am still trying to organize my thoughts about it. I will be hopefully receiving my dog in November or December of this year; so check in then to see how we are doing. :)

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    2. That being said, I do not know what their policy is about placing dogs with children. It is something that people feel very strongly about one way or the other, and especially with Tourette Syndrome (which can improve after puberty), it may not be something they are willing to do. I do not know.

      For me, this is the last option; I have exhausted everything else and I am "officially" an adult-Touretter. I do believe I will never "get better" and I have gotten progressively worse over the last 7 years, as opposed to improved.

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  5. Thank you for the information. My son will be 10 in a week and was diagnosed 2 years ago. He has gotten progressively worse the older he gets, but mostly the anxiety and the behaviors that come with it. My husband and I got him a puppy in January and have noticed a HUGE change in his anxiety as long as the dog is around, unfortunately school won't let him have his dog unless it is a therapy dog. That being said I am not sure that Perry is able to be what we need and even if he was I am not willing to separate him from my son for the amount of time it will take to go through the training. That being said I am very very interested in trying to get a dog that can be what we need. The change I have seen in my son since the first of the year are remarkable at home but his problems unfortunately occur, as you said in public, at school, at the store, times when it is inappropriate for him to have a panic attack but also inappropriate for him to have his "pet" with him. Thank you so much for the info and I look forward to seeing how things turn out for you and your dog.

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    1. Rhonda, I've just realized I never responded to you and I apologize for that. I try to reply to everybody really quickly, but the truth is that September and the first half of October really sucked. Tourette's wise.

      I think you may be a little confused with your terminology (and this is an important thing in the service dog world). A therapy dog is one that visits hospitals or retirement homes and is there to make other people feel better, but is not for a specific person with a disability.

      An Emotional Service Animal (which is sounds like your puppy is) is a pet for a person with a disability that reduces anxiety and makes them feel better. This does not mean the animal has any public access rights, but it does mean that were you ever to live in no pet housing or fly on an airplane, a doctor's note would allow the dog to go with you (this does not apply to no-pet hotels though).

      A service animal is a dog (the ADA now only applies to dogs, and in some cases miniature horses) that has been specifically trained to mitigate the symptoms of a person's disability. They must perform tasks or work; a task would be retrieving dropped objects or helping a person balance while walking, and work is something like a dog alerting to a person's seizures.

      I recently wrote about my thoughts for service dogs for children here (if you're interested in what I have to say): http://adogforkatherine.blogspot.com/2012/10/touchy-subjects.html

      I hope you check back in soon because Owen and I are set to be teamed up in a matter of weeks! I know it won't be all easy, and I'm not looking forward to going straight from team-training to my winter vacation (which will include multiple plane rides, family visits, and lots of places I am not comfortable being) but it will definitely push us to our limits. A trial-by-fire, so to speak. :)

      Best of luck to you and your family.

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  6. It's nice to meet another person who has considered using a service dog for TS. I have TS- going on twelve years now! I started using a service dog last year and the difference has been incredible. I wish you all the best in your journey with your new SD :)

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