What the service dog will do is two-fold. First, the dog will help with the anxiety component related to my Tourette Syndrome. And second, it will help with the physical aspects. But to explain what the dog will do, I first have to really dig into what it feels like to be a Touretter. Explaining Tourette's to a non-Touretter is very difficult, so bear with me.
The anxiety component is very central to my life as a Touretter. Many people with Tourette's also carry an anxiety disorder diagnosis; as do I. Over the last 6+ years it has ranged from mild to very very severe. Right now, I would classify it as pretty mild; most of the time. For whatever reason, when people with Tourette's experience any emotion in excess, their tics increase. So if I am angry, upset, or even excited, my tics will be much worse and much more noticeable. In addition to that, whenever you get anxious your tics get worse. There is a lot of anxiety wrapped up in having Tourette's Syndrome; I never sleep enough and I live a life of hyper-vigilance. I am always aware of where my body is and what it is doing. I have to be. When I am really tired or my brain is preoccupied with something else (like being upset or anxious) I can't keep tabs on where my arms and legs and head are and because I'm not as aware, the tics will sneak in unannounced. If I can keep tabs on where everything is, the second I get that ticcy urge, I can squash it down. Typically I do this with a combination of mental effort and by physically restraining my body parts (by crossing my arms, sitting on my hands, twisting my legs or arms up in a blanket, etc.). The mental part is what is hard to explain to someone who doesn't live it. Basically, it is like having a very thin net cast around my body at all times. I am constantly having to check that everything is inside the "net" and that it doesn't have any holes (ie. tic urges). I always have this block up, it is why I am delayed in answering questions in conversations and I have difficulty doing things fluently at times. Because some part of my brain, big or small, is always worried about knowing where I am in space.
If, a tic escapes (either because I'm tired or because the urge is too much to ignore), one of two things happens. Either, I am at home or with people I know and am comfortable with and I tic and then it goes away. If I've been suppressing for a long time, the tic might be really bad, but as long as I'm not in a socially inappropriate situation, that is normally the end with it. However, if I am somewhere where ticcing is "inappropriate" for whatever reason (like the movies, at a restaurant, or in a class) my anxiety automatically spikes. It is a knee-jerk reaction that I have no control over. This is due partially to years of embarrassment and judgement about my tics, and partially because I know the cycle I can slip into. It is very easy for my body to start ticcing and not stop for 10+ minutes. That may not sound like a lot of time, but try shaking your head "no" as hard as you possibly can and see how long you last. Now add in clearing your throat until you lose your voice, jumping while you head bang, and tremoring your hands. 10 minutes can feel like an eternity and then some. Once I start ticcing, the anxiety automatically kicks in. Once I become more anxious, the tics get worse and on and on and on. The tic attack has to run it's course, there have been very few instances where I have been able to get control once this starts to happen. My thoughts become so preoccupied with what my body is doing, how much pain I'm in, and how much I wish it would stop, that the anxiety increases and I become incapable of stopping the tics.
This is where the dog comes in. Dogs are naturally anxiety reducing; they help lower people's blood pressure and help decrease stress. So why not just get a dog as a pet? Why spend the equivalent of a college tuition on a dog? Because this stress cycle happens anywhere and everywhere. In fact, I am much more likely to start this anxiety-tic cycle out in public somewhere than at home. At home, it doesn't matter what I do; I'm not bothering anybody but myself. But if I'm on an airplane or in a movie theater sitting next to somebody, I can't afford to lose control. It's very difficult to explain to somebody, even people who I know, why I can look completely normal one minute and why I'm smacking them the next. It's not because I'm violent, it's because I lose control of my arm and it happens to fly into the person next to me. But that's very difficult to explain, especially if I am in the midst of a tic attack. A service dog will decrease anxiety, just by it's mere presence.
But it doesn't stop there. Just like they can train service dogs to intervene in panic attacks, they can train the dog to intervene in one of my "tic attacks". The dog will respond to physical cues - my tics - and will step in to draw my attention away from the tics. One reason the tics get so bad is because it rapidly and suddenly consumes my every thought. Having a dog who is trained to get my attention when I start ticcing will help that cycle not escalate as badly. It is the same theory that they apply when training dogs for people with severe anxiety or PTSD. The act of having to give the dog commands in that situation will draw my attention away from the tics and onto something else. The fact that I have a service dog, will decrease the anxiety. And the combination of these two things will give me the control I need to get my body back under control without hurting myself.
The dog will also help with the physical aspects of my tics. I have what are called dystonic tics. A dystonic tic is a sustained muscle contraction. It isn't as noticeable as a simple or complex tic because those involve lots of movement; a dystonic tic doesn't really look that bad. It isn't just a muscle contraction though; it is a muscle contraction that twists and contorts my body in ways it was never meant to move. It involves every ounce of strength my muscles can exert and then some. And it can last much longer than a simple tic; I have had these tics come and go all day long with very little break in between tics.
Some of these are just painful; I twist my right hand towards the outside of my body, turning my wrist. This hurts, but it doesn't really impact my functionality. However, when my right foot turns perpendicular to my body while I am walking, this is much more impactful. I have turned my foot so far around and for so long, that the bone bruise on my kneecap showed green and blue on the skin. This makes walking nearly impossible. When tics like this happen, and I have many of them, I am typically only left with one functioning leg, and I have to drag the dysfunctional leg around until it decides to work again. The dog will be trained to balance (through the use of a mobility harness) in these situations, helping me to be mobile until the tic abates.
In addition to the dystonic tics, I also head bang. A lot. This isn't so bad when I'm sitting on the couch. Though, even then, it can become dangerous if I tic myself off the couch or into a piece of furniture (hello concussion...). But, when I'm walking somewhere, head banging suddenly becomes highly dangerous. I have ticced so hard while standing up I have knocked myself to the ground, and then continued to tic on the floor, often slamming my head repeatedly into the floor. Hopefully, this happens on carpet or around somebody who knows me and can get a blanket or pillow to cushion the tics. When I'm walking down stairs and this starts, I have to freeze wherever I am and if the tic doesn't go away quickly, I have to sit down on the steps for fear of falling down a flight of stairs. Because of this risk, I am always aware of where I am when I'm walking. I have to walk down stairs with my hands gripping the rail; I can't afford to risk walking down without a rail and starting to tic. Even then, a lot of times I have to take elevators if I can't keep my body still enough to walk down stairs. It is so frustrating, having a body that works, but having to wait on an elevator for a single flight of stairs because I don't have enough control. When walking on flat surfaces, I like to walk next to walls or people I know. This way if I become unbalanced there is something (or someone) for me to touch and ground myself until the tic passes. However, I don't always get to walk where I want. This is where the dog will help out; it will be trained to balance in these situations so that I don't have to be constantly aware of where I am walking or afraid of going up and down stairs. Through the use of the mobility harness and the dog, I will be able to go anywhere without fear of losing my balance so badly I fall over. The dog will help stabilize me until the tic passes.
In addition to all these things, the dog will do a lot more. The dog will automatically alert people to the fact that there is something different about me. Tourette's is a virtually invisible disability. Until I start ticcing, there is no way for anybody to know that there is anything different about me. In crowded spaces people come up right next to me and I have even had strangers get on the same escalator step as me in crowded malls. The second somebody I don't know gets within arms reach, my thoughts automatically go towards don't tic, don't do anything that could hit them, don't move your arms. It is a lot like having a very very bad itch; eventually it consumes every thought until it is all you can think about until you scratch the itch. Not having to be constantly aware of everybody around me and constantly having to keep track of where my body is would be liberating. A Heeling Allies service dog will be trained to provide what is called a buffer space by walking and standing a small distance away from me. This will discourage people from getting too close to me, even in crowded situations.
The dog will also be trained to do something called deep pressure. One of the things that helps stop a tic attack in it's path is receiving tactile impact from where my body is. I can accomplish this by physically restraining the ticcing body part. It is difficult to explain what it feels like to not be spatially aware of your body, but it is similar to what individuals with Autism experience. When I start ticcing sometimes I can't even figure out where my body is in space to try and get it to stop. Having the deep pressure to relax me will help to stop the tics because I won't have to be figuring out where my limbs are, the tactile feedback will automatically alert my brain. Receiving tactile feedback is an automatic process, for me to "find" my arms or legs and then stop the ticcing is a coping skill I have trained myself to do over time. Deep pressure is in essence recreating the feeling you get when you get a really hard hug. The dog will do this by literally sitting in my lap or laying on top of my body (if I happen to be on the floor). Not only that, but it will be trained to respond to severe tic attacks, like when I knock myself on the ground, and will do this automatically without requiring a verbal command which I am often incapable of giving if the tics are that severe.
So why the service dog? Because Tourette Syndrome is a disability with no known cause and no cure. Because I have tried every viable medication option and then some. Because medication isn't a choice for me. I am still trying it and I plan to stay on top of medical advances, but the sad truth is that Tourette Syndrome isn't the disability du jour. It's not pretty and we don't like to talk about it as a society. We would rather imagine Touretters as being people who scream "mother f***er" in inappropriate situations while twitching, than view it as a real disability. There really isn't that much in the way of research and we don't know much about it. We don't know in which part of the brain it occurs, only that something in the brain has gone haywire. And if we don't know why it is happening, it is stupid to hope that we could find a cure or even a treatment option for everybody. What works for one ticcer may not work for another, and then with cases like mine, even after trying 4 different classes of medication (totaling to 7 different medications at varying dosages) and after trying homeopathic remedies, sometimes nothing works. The dog will help offset the symptoms and will help me have a greater quality of life by allowing me more independence and freedom. It will help me integrate with the non-disabled population and the hope is that over time, my tics will decrease in severity and number by having the dog to diffuse situations that can escalate. Many of my dangerous and painful tics have arisen out of severe tic attacks; one day my hands are flying up of their own volition, and then the next day because I am ticcing so hard, I accidentally hit myself in the forehead. Then, before I know it, that has become it's own tic and what was once not that scary, is suddenly a tic causing severe pain. Having the dog to diffuse these bad tic attacks can help the progression of tics where they will start relatively mild and then escalate into something dangerous.
postscript: I am working with a friend to compile a videotape of my tics to send to the director of the service dog organization and to send to the trainer so that they have a better understanding of my tics and can imitate what I do to get the dog comfortable around somebody without control over their body. I am working closely with the director to brainstorm ideas for the dog, and will post if we come up with another idea for a task the dog can perform.
UPDATE : If you have come here by searching for a service dog for your child with Tourette's please read my post here. This isn't all sunshine and rainbows; this is a huge decision that will change my life forever, and not all in positive ways. Please consider what I have to say about looking into a service dog for a child.