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.


  1. have you had DBS? just wondering as you say this is the last resort for you.

  2. No; the reasoning for this is two-fold. Right now it is not an option. My neuro does not feel like it is an appropriate course of action. And I agree. However, he also does not realize how severe my tics are. The way I see it, he will give me the same medication options regardless of how severe my tics are. The only thing I am keeping off the table by not telling exactly how severe my tics are - and he knows they are severe - is DBS (Deep Brain Stimulation, for those of you not in the know).

    The second reason is simple. I don't want it. I don't want to deal with the risks of brain surgery for a procedure we don't even know would work. The only time I would ever consider DBS would be if my tics were so severe I couldn't work, drive, etc. As it is now, I can do all those things, my tics just make it extremely hard.

    My service dog is the last option I am willing to try at this point in my life. I do not want any more medical interventions; I am tired of dealing with doctors who can't help and I am not willing to risk brain surgery.

  3. Thank you for your post. I have a 9 year old son with TS. We are not looking for a service dog but we are considering a regular pet dog to help with his anxiety. His tics are moderate to mild right now but his anxiety at night is pretty high since my husband started working the grave yard shift. It was while researching how a dog could help my son with his anxiety that I found your blog.

    1. That sounds like a great idea! Depending on your living situation, you may want to look into an Emotional Support Animal. An ESA does not have public access rights like a service dog and does not require any special training, but having a letter from a doctor recommending an ESA can help you get a dog into no-pet housing and/or not pay pet-deposits if you rent. You can read more about ESAs here:

      Owen has made such an impact on my life; this was the first time I have completed a semester at school without significant anxiety and panic attacks. I'm working on a post soon about how much different my life is now, but suffice it to say - dogs can be miracle workers. :)

    2. To Teri, if you have not gotten your son a dog yet - I think this is a GREAT idea. It should however be the right dog. I would try contacting some reputable foster based rescues in your area. Being foster based, the dogs have been living in a regular home and given basic training by foster parents, and they often get dogs that would be PERFECT for that type of job (I had one myself), but not many applicants looking for that. They've already been tested as adults in a multitude of situations, and you can know exactly what to expect, and also have the support system of the foster family. You don't have to deal with the stress of training a puppy, or not knowing whether or not the dog you get will turn out the way you hope. In rescue, it's amazing to see a dog go to a home where they can really make a difference. I wish you the best of luck!

      To Katherine, thank you for your post. I'm 26 with mild tourettes, but as life gets more stressful, the tics get worse.. I'm afraid of what's to come next, and have tried all the medications with either no effect or a horrible outcome. I have considered a service dog, but I can't pay for a fully trained one from an organization, and frankly other people need those ones more than I do. I am however very experienced in dog training, and could train my own.. but I also don't want to come off as a "faker" as you mention in your other article.. I'm very undecided at this point. I will continue to follow your blog though, it's very insightful. Thanks for sharing this journey!

    3. @PhoDOGrapher

      I don't want to come off as being anti-owner trainer, because I'm not. However, there is a very *very* low success rate for people training their own service dog. The wash out rate is quite high as not many dogs have the temperament to be service dogs. If Owen wasn't such the sweetheart he was, I would be worried about how he was handling our first week at work - but because he is amazing and has just the right temperament, I feel comfortable having him at school with me this week as we get ready for the first week of school (most days staying at work 10+ hours!) and I had zero worries last night at our meet the teacher night as we navigated through traffic jams as there were hundreds and hundreds of people packed into the school.

      Owen almost didn't get through training due to an injury (thankfully, it turned out to be a very bad sprain and nothing worse that would have put him out of commission) - the injury happened at the end of training; had I been training him myself, I would have had to face the reality of having a dog who may not have been able to work, that I would have put thousands of hours and dollars into training, and been maybe facing thousands of dollars in veterinary bills - all for a service dog who may not have been able to work. Because we went with a program, they absorbed all that risk.

      I wish you luck - I definitely understand the struggles that come with TS; as I have gotten older my tics have become more detrimental, but I have gotten better at suppressing them - leading to very high stress days! Owen is one-of-a-kind, and even with TS makes me want to cry, he makes me laugh every single day, and for that alone, I would be thankful. :)