Why Tourette's is not the same as OCD

This is something I see blurred all the time.  With the new DSM coming out soon, I am afraid the line will be blurred even more.  The DSMV is attempting to categorize Tourette's alongside other mental health problems, including OCD.  Something that could have drastic implications for somebody like me who has a neurological disability not a mental health problem.

Tourette's is not the same as Obsessive Compulsive Disorder.  They think that they are related genetically; this is why you may see OCD in a family and have a case of TS pop up (like my family) or why you see a lot of comorbidity between OCD and TS.  But they are NOT the same thing.

I have both.  My OCD is so mild, it's really not even worth talking about.  Except for the context of this post.  I am what is called a "checker".  I check things; that the doors are locked, the stove is off, etc.  My rituals (if you can even call something so mild a ritual) take maybe 3 minutes total out of my day.  Occasionally when my anxiety spikes, my OCD spikes as well.  Then the rituals become a little more demanding, and I have to actively work to control the OCD.  I can do it if I try hard.  Sometimes it's harder than others; but I can actively choose to not engage in the rituals if I want to deal with the stress of doing so and the mental effort required to resist.

But OCD rituals are not the same as having a tic.  When I turn a doorknob to make sure it's locked, I'm not ticcing.  When I want to get up and check if the stove is off, standing up to do so is not a tic.

For some reason, one I can't quite understand, it seems that parents are much more happy attributing their child's idiosyncrasies to Tourette's instead of OCD.  A compulsion to lick things, smell things, touch things, or taste things is just that.  It's a compulsion.  It is due to obsessive compulsive behaviors.  It is not due to Tourette's.

It makes me upset to see these things.  Tourette Syndrome is not a mental health problem.  It isn't psychiatric.  It is a neurological disorder.  This is a distinction that apparently even doctors have trouble making, seeing as the new DSM plans to place Tourette Syndrome under the same heading as mental health problems - "Anxiety and Obsessive-Compulsive Disorders".

Now, don't get me wrong.  I'm in no way saying that mental health problems are in any way less "severe" of a disability than what I have.  I'm not saying there is a problem with having a mental health problem.  Just that I don't have one.

Saying Tourette Syndrome is a mental health problem is the same thing as saying Parkinson's or Huntington's are mental health problems.  Everybody knows that is not true.  Why is it so hard to accept that Tourette's is neurological in nature?  No amount of therapy is going to cure me.  There is no "end" for me; sure, they could do things to my brain that might help.  But nothing is certain.  Something is haywire in my brain that cannot be fixed; but that doesn't make it a "mental health" problem.  It makes it neurological.

And these parents who are blurring the lines between Tourette's and OCD are perpetuating the idea that Tourette's is a mental health problem.  It's frustrating as an adult with Tourette's to continually read these things.  It isn't my place to step in and say I think somebody's child has OCD or that a compulsion (like smelling/tasting) is not a tic.  There are even adults with the dual-diagnosis who write about those compulsions being tics.  Who am I to say they are wrong?  Of course, it sounds "better" to say it is a tic than to say it is due to OCD.  But just because somebody thinks it sounds better, doesn't make it true.

My personal theory, is that the reason things like Cognitive Behavioral Intervention for Tics (CBIT) and Habit Reversal Training (HRT) are popular amongst the Tourette's population is that so many of us have the dual-diagnosis.  The line is blurred for many of us between tic and compulsion.  And when that line gets blurred, things like CBIT and HRT can work. 

Let me explain with an example from my own life.

A few years ago I had a string of horrible self-injurious tics.  They were still tics, not considered compulsions, but they were tics that had "mutated," so to speak.  Initially, I had a tic where my hands would fly up.  Then once, accidentally, one of my hands hit my head.  Over time, and due to a very severe migraine and weeks of poor sleep, those tics mutated into self-injurious behaviors.  I would ball up my fists and bash myself in the head.  Over and over and over.  But, it wasn't just a tic.

There was an inherently reinforcing quality to hitting myself in the head (sounds crazy, right?).  Migraines are helped by pressure; I've even bought (and lost) compression headbands to put ice packs in because the pressure can help dull the pain of a migraine.  By walloping myself in the head, I was temporarily relieving migraine pain.  So, over time, this tic became more of a compulsion.  It was being reinforced by the relief of migraine pain, which made the tic harder and harder to suppress.

This was the one tic I have ever been able to stop through the use of CBIT.  (No, I've never paid anybody to teach me the techniques - this was a crash course by my neurologist.)  Because the tic wasn't just a tic, I was able to use CBIT to stop it.  Other tics?  CBIT doesn't make a difference.

Now, there are some CBIT techniques I use daily that I feel are helpful.  I have taught myself how to recognize when a tic is going to happen, and I can suppress for an amount of time.  I can "transfer" tics; so if I don't want to squawk, maybe I can clear my throat or chirp (both of which are less noticeable than a giant squawk).  It's not an exact science and some people with Tourette's can't do this.  Is that because they haven't figured it out yet?  Because they aren't trying hard enough?

I don't think so.  With severe Tourette's you would do anything to try and make it stop.  If it were possible for a person to suppress, I have to believe they would learn how to do it.  However, I also think that no matter what was going on in my brain, I would have figured out how to do this.  The first year or so I didn't know how to suppress; it was a gradual learning process and it was not easy to learn how to do.  During that one year (first year of college) when my tics improved for no apparent reason, I forgot how to actively suppress.  And when those tics came back the next year, it was brutal for months while I re-taught myself how to suppress the tics and control my brain.  I think that no matter what, I would have learned how to do these things, no matter how extreme my Tourette's.  I can't imagine life without these coping strategies.

There are no tests for Tourette's, just like there are no tests for OCD.  There is no blood draw or CAT scan or MRI where they can look and say definitively whether or not you have either of these diagnoses.  They are diagnoses of last resort; when nothing else is wrong with you and you fit a certain number of criteria, the doctors can diagnose you with things like this.  The difference lies in the nuances, which may not seem that important to somebody else.  But when I am applying for work accommodations with my service dog, I would really prefer the DSMV accurately reflect my diagnosis instead of muddying up the water.

Dear parents of kids with Tourette's,

The other day I inadvertently stepped on some toes on an online group (thus solidifying my acceptance into the "extremes" group, but that's a different story).  I'm tired of censoring myself on online groups and trying to play nice.  It's hard to tell someone that is 15- or 20-years your senior that you don't value their opinion.  So often in these online groups I see medical advice traded by people with no medical background.  And I'm tired of it.  The thing is, I have two parents and a whole slew of medical professionals on my payroll.  I've seen so many specialists over the years; and the specialist I'm currently seeing is the last one.  There isn't anybody else he can refer me to.  When he says, "I don't know," it's really because there are no other choices.

The medical advice of a parent that I don't know online, isn't going to be anything I haven't heard or tried before.

So right about now you're asking yourself, why are you asking for medical advice online?

I'm not.

These parents see people like me venting about our day (because who can you vent to except somebody else who really gets it) and they step in to offer medical advice.  And then get mad when you tell them their advice isn't wanted or helpful (or that the advice they're offering is totally whack).  I know it comes from a good place; but really... I just can't get behind it.

If I wanted advice - I would explicitly say so.  But when I'm having a rotten day because I have pinched nerves and because my hands are going numb from carpal-tunnel syndrome, I'm not going to preface my vent with a disclaimer statement.  In my opinion, if somebody does not state that they want help, then don't offer it.

I'm years, countless pills, and many doctors into this diagnosis.  Do you really think that some random person on the internet is going to have heard of something I haven't tried yet?

This has long been my problem with online support groups for people like me with Tourette's.

They don't exist.

Approximately 90% of the people in these groups are parents moms of a child with Tourette's.  There are a few token adults in the group; but the "extremes" (which I don't even count as technically - think me times 10) get pushed aside.  People pity them and feel bad for them, but nobody can relate to it or empathize except other extremes.  The "extreme" group I am now a member of has 10 people in it - including myself.  The main page of the group?  There are over 800 people now.

The moms like to empathize with each other; they talk about how annoyed they are by their Touretter's tics and they trade medical advice.  They rant about their children's teachers but in the same breath say they don't believe in getting their child an IEP because that would "label" them.  Not to be callous, but if you won't label your child, you can't demand accommodations or modifications to the curriculum.  You can ask, but nobody is going to be forced to comply.  They talk about going to due process and suing the school district, which as a teacher upsets me.  I think any teacher, given the chance, would do the right thing by a child with special needs.  But when parents come in upset and angry and threatening, it isn't going to end well for anybody.

These moms blur the line between Tourette's and OCD - as if it is better to have tics than to have OCD.  Because then they don't feel the need to force their child to try and curb the behavior, if it's a tic, you can't do anything about it.  But if you label it OCD, then you should be trying to fix it.  My personal experience with OCD is that if you start allowing the rituals to occur without trying to quell them, they'll only escalate.  I'm working on a blog about it - but here's the situation in a nutshell: compulsions to taste, touch, smell, or lick things or people are not tics.

These moms like to offer people like me advice and sympathy; as though them telling you that they are proud of your accomplishments means anything.  As if them asking you if you've tried Tenex (the first pill everyone with Tourette's is given) is going to help.  But it makes them feel better.  They don't want to hear from us about the bad crap.  They want us to console them when they feel bad about their ticcer in the house.  They want to hear people tell them it's okay when their ticcer is driving them up the wall; they want to be told that they aren't a bad mother for losing their patience with their ticcer.

My honest opinion?  You don't want to hear it.

If I sound ticked off, it's because I am.  I'm tired of not having a safe space to talk about Tourette's.  I'm tired of having people who have no idea what I'm living with trying to help me.  I'm tired of constantly hearing about CBIT or HRT or some magical homeopathic supplement that you think is working.  Tourette's sucks.  It takes everything you have and then wants more.  It's hard to learn how to cope with and it's a fight every single day.  But it's one you have to learn how to fight - doping yourself up isn't going to help you learn how to cope with it.

So you know what?  Here's my unsolicited medical advice.  I know you didn't ask for it - but I'm going to give it anyway.  So there.

Medications don't fix everything.  You talk about how great your kids are doing on Risperidone or Xenazine (tetrabenazine), but do you know what those medications are doing to your child?  Do you understand the risks?  The side effects?  I read one parent talking about how there were no side effects on Xenazine - WRONG!  This is the pill I refused to even try.  There is a high rate of depression and even suicide on this medication.  With my history, there was no way I was going near it.  Insurance does not like to pay for it, making it hundreds of dollars a month for people with Tourette's.  Risperidone is highly addictive and very difficult to get off of.  It causes horrible side effects, including significant weight gain (mine came mainly from Orap, which is in the same class - antipsychotics - as Risperidone).

All of these medications eventually build up in your body; which cause the doctors to try and prescribe more.

Parents ask about Topomax a lot now; even though a lot of us with (bad) experience with the medication caution people about it, nobody listens.

Everybody says, "Medication works differently for everybody.  It's worth a chance."

But nobody says, "Medication works differently for everybody.  Maybe nothing will work."

Is it worth the chance?

Is that anybody's decision to make except the person taking the medication?

Is that the choice a parent should be allowed to make for their child?  How old should the child be until they can make that decision themselves?

The kids know they don't like the pills...  I read time and time again stories about how to get a child to take these medications.  Maybe they shouldn't be taking them...  Maybe there is a reason they are resisting the medications.

Maybe parents should listen.

My opinion - even though I know nobody asked for it - is that it's better to learn how to fight this early on.  Every minute of everyday, I have to fight the impulses in my brain that are trying to make my body do things I don't want it to.  Most of the time, I'm able to win.  But that is with years and years of practice.  If I were doped up on Risperidone or Haldol, I wouldn't be able to think straight - much less deal with my tics.  In my opinion it is always better to be clear headed than be doped up on pills.  What are you going to do when the pills stop working?  When they increase the dosage and the side effects get worse?  When the pharmacy messes up your pills?

Me?  I don't have to worry about those things.  I'm (tic) medication free and loving it.

Perplexing Question

So, I get asked this one question a lot.

And it probably isn't the question you're thinking of.

It isn't, "Is that a service dog?"

It's not, "What does he do for you?  You don't look disabled."

The question - believe it or not - is something along the lines of: Do you pet him at home?

Um... really?

Owen is exceedingly spoiled.  I don't think it's possible for a dog to be spoiled (in healthy, dog-appropriate ways) anymore than Owen is.  He eats food that is leaps and bounds above what I eat.  He "wears" gear that costs more than anything I have ever bought in my whole life.  I take better care of his nails than I do of my own.  I give Owen regular "massages" on his shoulders and upper back (where the harness sits).  He gets groomed all the time and has oodles of toys and good chew things.  He even has a cat to play with 24/7!

People act surprised that Owen gets to be primarily off-duty at home.  So, here I am, clearing the air.

Owen never wears his harness at home.  That is a "going out" harness.  Do I struggle to keep my balance at home?  Sure.  I'm slow and careful on the stairs going to and from my apartment.  In my apartment I wobble and keep my arms outstretched to help me balance.  I still tap walls and door frames inside my home.  Occasionally, I still fall.  When I do, Owen is right there to help me get up.

When he helps me get up, I'm not putting my whole weight on him.  In fact, I barely put any weight on him at all.  I use him to balance.  I put one hand on my knee (like I would anyway), and the other hand on his back.  He gets told the command "stand" twice; the first time to stand, and the second time to brace (they used to teach the command "brace" but it sounded too similar to "break" which caused confusion).  Having him to balance with when there isn't something else nearby makes a huge difference.  But he isn't in his harness at home.

I suck it up going to and from my truck.  The other morning I was unstable and hit a patch of ice and went down.  Owen was a little upset that I had fallen, but he helped me get up and we went on our way.  When we take walks, he isn't in his gear.  He's allowed to wander on-leash and sniff things and just be a dog.  He still has to mind though; if I say "here", I expect him to come here immediately.  Practicing these things is good, it encourages him minding me at all times - even when he is "off-duty".  Owen has to mind his manners regardless of where we are; he gets told "quiet" if he barks at home and gets told "enough" when playtime gets too rough for me (he likes to jump on top of me on the couch, ignoring whatever is in my lap).  He is expected to ignore other dogs (within reason) when he is off duty, I don't allow him to pull towards anything or anybody.  But he is still allowed to be a dog, just a well-behaved dog, when he is off-duty.

Owen is expected to do deep pressure therapy at home, but he loves it.  The other night I invited him up on the couch and he immediately settled right on top of me and fell asleep.  For Owen, DPT is a chance to snuggle - he loves doing it and will do it any chance I give him.  It's not "work".

I'm shocked that people don't realize that a service dog does get a chance to be a pet.  Just because I don't want random people petting Owen, doesn't mean I don't pet him.  It means I don't want you petting him.  Just because he is expected to be calm and quiet out in public doesn't mean he has to be that way all the time.  Owen is a naturally calm dog; they had to pair me with a chill dog who doesn't take things personally (I couldn't begin to count the number of times I walk into Owen or drop things on/near him).  Owen is slow and steady where I need him to be.  But he still gets zoomies like other animals and can act like a complete goofball when he wants to.

If there were anything I could do to give Owen a better life, I would do it.  We added in more exercise into our routine this week because he was getting destructive at night.  (The whole story is on our facebook page.)  But as far as Owen is concerned, he's got a pretty good life.  He gets to go with his person everywhere she goes (with the exception of a few places - like when I go to the gym for crazy busy classes), he eats good food, he has lots of toys and he even gets peanut butter once in a while. 

Wednesday night, in my grad class (6 other people and one professor I am very comfortable with) Owen had a great night.  He was a total stinker when we went to class; I went to get him situated under my desk and when I told him "under" he went under.  And kept going.  All the desks were pushed together, so Owen started wandering around under the tables looking for suckers to pet him.  He came right back when I called him and laid down at my feet, completely angelic.  I was so impressed with the other grad students.  Nobody paid him any attention at all; no pets, no looks, nothing.  It was great.  Had somebody pet him (or even looked at him), it would have reinforced the wandering under tables behavior.  Instead though, he got a correction from me and no attention from anybody in the classroom.  In Owen's mind, why would he ever do that again? 

After class we were hanging around talking informally for a bit and Owen was doing a "paws up" with me.  I told him "all done" and decided to give him some "off-duty" time.  This was something I would never ever do in any other class setting.  But the people in this class know me very well; they have seen me on the floor ticcing, unable to sit in desks.  They listen to me chirp and squawk in the observation room.  They help me out when I need it; whether that's carrying stuff or always being the scribe during group assignments.  They get me.  So I took Owen's gear off and told him "okay".

Oh my gosh, you've never seen a happier dog.  He couldn't figure out who to visit with first, and he got tons of pets.  Off-duty time ended when he tried to do a "paws-up" in my professor's lap.  Whoops!  She kind of patted her legs and leaned back in her chair a bit, a clear "signal" to Owen.  He knew he had made a goof though, and he got a few more pets before he went back to work.  He was a perfect gentleman on the way out.

With people I know, I'm comfortable with them petting Owen.  He got lots of pets in the office at school today while I was doing some paperwork.  He and I are working on differentiating "work" from "off-duty" time, even at school.  And so far he is doing quite well with it.  Obviously, if he were to start acting distracted at school, the pets would stop.  But for now, Owen loves getting to go to campus and I'm happy to let him keep enjoying it as long as he remembers he has a job to do.

Good service dog owners make sure that their dogs have time for play and downtime.  It's about finding a balance; when we start working as teachers (because yes, Owen will get to be a teacher too), I will have to make sure he gets downtime at school.  I pay close attention to Owen, looking for stress signals while we are working.  If we were in a situation where Owen wasn't comfortable and I didn't feel like we could work through it, we would leave.  And when we start working longer days, Owen and I will have to work harder to make sure we have that downtime in our schedule so he doesn't get burnt out.

So no, just because I won't let you pet my dog, doesn't mean I don't show him any affection whatsoever.  I love this crazy, goofy dog - and there's nothing I wouldn't do for him.

Please don't distract me...

...I'm working!

I have been thinking about this post for a long time.  How to word it in a way that doesn't come off too harshly.  How to approach this from a level-headed frame of mind.  How to make my point heard.

And what it comes down to is my dog.

I know that Owen is handsome (exceedingly so, in my opinion) and he attracts a lot of attention out.  And it isn't just me projecting this onto him; Darcie warned me that he was one of their top two attention-grabbing dogs out in public.  And it doesn't help matters that Owen hams it up out in public; when he spots somebody he thinks he can get to look at him (and hopefully come over and give pets), he perks his ears up, wags his tail, and does "puppy eyes".  (We actually heard a little girl out in public one day as Owen gave her this treatment cry, "Oh mommy, look!  He's doing puppy eyes!")

Usually, this is all Owen does.  He stays by my side (or wherever I have placed him) and is ready to work when I ask him.  If he starts to stray a little bit and looks like he might "break" his stay to go try and see people, I will tell him "leave it" and that normally refocuses him right away.  Worst case scenario normally is that he gets a leash "pop".  Because Owen wears a martingale collar, it doesn't do anything other than snap the chain under his chin and make a noise.  The collar barely tightens because the chain is pretty slack already, it is more about the noise of the chain when you give a correction, than actually choking the collar up.

Normally, this is all we have to do in public if Owen gets a little too people friendly.

However, this would be an ideal situation where the public respects our space and our privacy.  I understand that it is pointless to get upset over people looking at Owen; although it sometimes only takes a look (especially from kids) to put Owen in "puppy eye" mode.  But the people who make kissy noises at Owen?

I really don't understand what they are thinking.  This happened to us the other night night when we walked into a sushi restaurant (which I was a little on edge about because certain types of restaurants are more likely to try and refuse access - but we had no problem) and immediately, a group of patrons at the bar go "Awwwwh," loud enough to be heard across the entire restaurant.  As I was getting Owen into a comfy spot by my chair, this same group of women start making kissy noises at Owen.  Were they trying to distract my dog?  Get his attention?  Get him to come over?

I really can't understand why somebody would do that.  It happened to us as we were walking through the airport in Houston; a teen walking by us started making noises, trying to get Owen's attention.  Owen ignored her completely and I stared her down; she stopped immediately once I caught her attention (I think she thought I may have been blind - and I startled her).  But why would somebody try to distract a service dog?  I truly cannot comprehend what has to go through somebody's mind for that to be the choice they make.

Here's the thing.  If you distract Owen enough that he forgets his job, I have to give him a correction.  I have to get him in trouble because of other people's actions.  Why would somebody think it is appropriate to try and get my dog's attention from across the room?  I just can't wrap my brain around this one.

But these are normal things; they are easily corrected and Owen and I can go on our way.

Drive-by-petting on the other hand?  (Drive-by-petting: petting a service dog without the handler's knowledge; typically done with a hand lowered down to the dog's level as the offender walks past the service dog team)  We've already had two instances and we've been on our own less than a month.  The first was at the restaurant our first day on our own; at the time I was shocked.  Not to say that I forgive that offense now, because I still think it was beyond rude, but it was nothing compared to when we were at the Nutcracker ballet after Christmas in Houston.

Leaving the theater was a zoo, there were people everywhere.  On the way out of the theater, I turned around and saw an old man reaching out and trying to grab Owen's wagging tail!  Seriously?  I asked my dad to walk behind us and "watch Owen's tail" (he had no idea what I was talking about until we got out and I told him).  Once out of the theater, we were stopped for a moment while people tried to figure out where to go, and unbeknownst to me, a woman behind us had her hands all over Owen.  When we started to leave, Owen didn't follow with me.  Curious, I turned around to look at Owen and tell him "Let's go" again, only to see this woman I didn't know petting my dog.  She had the grace to look embarrassed when I caught her, and I thought that was the end of it.  However, as we started to leave, she ended up following right behind us the whole way out of the theater.  Owen kept looking over his shoulder at her; whether he wanted more pets or was leery of the stranger who had her hands all over him, I don't know.  Owen had to keep getting corrected to pay attention, and we were privy to the woman's conversation with her friend the whole way out of the theater.  Things like, "Oh, he's getting in trouble now," "I think that's because I pet him," and "I just pet him for a minute."

This is the problem though.  When you ask to pet Owen and I say yes (which is rare), he knows he is supposed to greet somebody because I give him the command "say hi".  He knows that for a brief period of time he can get pets, but then he must return to work.  But when something like this happens, it throws him for a loop.  And because of that, it led to a lot of corrections on my part, something I hated having to do.

My family says I should be appreciative of the parents who explain to their children that Owen is a "working dog" and that he has a job to do and that they can't pet him and of the people who respect our space and don't bother us (and I am).  But people doing the right thing, doesn't make up for the selfish people who distract my dog without thinking.  I doubt I will ever be "okay" with this; I know it is part of walking with a service dog, but that doesn't mean I have to be "okay" with it.

In my mind, it is basic dog etiquette.  I am shocked how many people say things like, "Oh, I had no idea I couldn't pet him when he's working."  Owen is my service dog who I need to have a somewhat normal life.  I don't bring him places with me so that other people can pet him.  Basic dog etiquette is that you don't interact with somebody's dog without asking them first.  End story.  You wouldn't go out of your way to pet somebody's dog while they were walking it on a sidewalk, so why do people go out of their way to pet my service dog?  I need Owen to live a normal life, trust me.  If I could feel the same way I do now about going places without Owen, I wouldn't have gone through this roller-coaster of a journey and spent $20,000 on a service dog.  I did that because I wanted my freedom and independence back.  And I have it.

But just because I choose to walk with a service dog for my health, doesn't mean that I bring him places for other people.  It doesn't give other people the right to distract me and him.  And just because I have a disability and a service dog doesn't make me a walking, talking, interactive show-and-tell exhibit.

I am practicing delivering a few responses that will help me out.  Nothing has been confirmed by a doctor, but over the last year or two I have noticed increasing processing delays during verbal conversations that I am not anticipating.  For example, if I can plan what to say before I call somebody (like a doctor's office to check on prescriptions or make an appointment), I do fine.  But if that same person calls me and I have to have an unplanned conversation it's very difficult for me.  The same goes for unplanned interactions out in public.  If I were going to give a presentation on Owen I would prepare what I wanted to say well in advance.  I talked with the other grad students tonight about rules for Owen (don't touch, don't feed, don't distract), and I practiced what I wanted to say beforehand.  But out in public when I turn around and there's somebody standing there trying to pet my dog, it throws me for a loop.  Practicing what I want to say in advance (and making sure what I say is short and to the point) will help me feel less flustered in situations like this.

Things you may hear if you try to interact with me and my dog out in public:

"Thank you for asking [to pet my dog], but he is a service dog and I need him to focus on his job right now."

"Please do not pet my dog, he is working." (getting increasingly loud and less polite as needed...) :)

"Sorry, I do not feel comfortable discussing my medical information in public."

And don't even get me started on the undergrads in the hallway who, while walking by the classroom, see Owen underneath my table and go "Awwwwwh" loud enough to distract the entire class I'm in.  (Do you know how ridiculous you sound?)

Home again, home again...

Whew!  3 weeks of traveling and family and doctors appointments; Owen and I are exhausted!  We got home two nights ago (late) and then yesterday morning we were up bright and early to go to work.  Owen and I did Sunday school and immediately afterwards went to the specialty dog food store that is located by work.  Owen eats a brand of food called Honest Kitchen; it is a dehydrated raw mix that I use as "topper".  He gets in in addition to his regular food as it has a lot of nutrients and extra goodies that kibble doesn't have.  I've only been able to find the small boxes locally, but luckily this store (which is amazing) is willing to order me a large box of the Honest Kitchen version Owen eats, which will save us a lot of money in the long run.

After doing that, we went to the grocery store - the first time we've gone grocery shopping by ourselves since team training!  It was soooo much smoother than the first time I tried shopping by myself.  Once we were done grocery shopping, we hopped over to the vet to pick up Toby.  Poor Toby was there for 21 days!  I think he's happy to be home, but honestly, Owen and I haven't seen much of our kitty cat friend since he got home.  He hung out with me last night on the couch, and I know Toby spent at least some of the night sleeping in bed with me and Owen, but I haven't seen him as much as normal.

I think everybody is very very tired.  In fact, as I write this, Owen is curled up on the couch, snoring on my feet.  Here's a little glimpse into what has Owen and me so tired!

Birthday breakfast with Owen!  We got up early to go out to breakfast with my mom; Owen caught a few zzzz's under the table while we ate.

I got my haircut and Owen slept (seems to be a common theme).  I chopped off *a lot* of hair - it's going to Locks of Love - but I think the short hair is slowly growing on me.  Owen was a superstar; he slept on his mat the whole time we were there!

Owen working in the AT&T store.  For a birthday present I got to replace my phone - my old iPhone was over 3 years old and was showing wear and tear.  I'm anything but easy on my technology; even with the best case I could buy (rubberized so when the phone got dropped or thrown it bounced), the phone was cracked and not working consistently.  In addition to getting my phone (and the Apple care warranty), we bought an Otterbox case - the "Defender" series.  Hopefully it can help keep my new phone safe!

Owen looks quite bored of Panera - I think we went at least 5 times when we were in California!

Owen, my mom, and I went "downtown" to the next town over where they have a large shopping center and PF Changs(!).  We had a great seat and I put Owen next to my chair in this out-of-the-way spot; so I thought.  It was out of the way of the servers and other patrons, but everybody who walked into or out of the restaurant walked right by Owen!  He loved the spot and loved getting to be the center of attention. :)

Our last day in California soaking up the sun!  We went to Yogurtland (a serve yourself frozen yogurt bar); Owen was quite thrilled to be there and I was thrilled to get to be in the sun a little bit longer (it's below freezing here all day long!). 

Our flight home was probably one of the best flights we have done; security went smoothly, we pre-boarded and got the exact seat I wanted, we had great seatmates and flight attendants who were enamored with Owen, and the flight went smoothly!  What more could you ask for?

Owen and I are enjoying being at home; we are having an "easy day" today, I am planning to work on reinforcing some of Owen's commands (specifically: leave it) that I have been lax on because I've been sick since we got back from Texas.  Tomorrow we have a nail appointment, chiropractor appointment, and our first class of the semester.  Wish us luck!

A Tale of Three Cities

Once upon a time there was a service dog and a girl who needed to go on a trip.  Their family was getting together in Texas for the holidays and they had to get on two different airplanes to go to Texas and one to go home.  They needed to go through security each time they got on an airplane (three different days, don't ask them why, they didn't book the flights), and each time security did something different.

In Spokane the TSA knew exactly what to do.  They let this girl and her service dog go right through the metal detector (which is legally required) with no arguing.  The girl went first and did not beep, and then she called her rockstar of a service dog through (this is the smartest way to do this you see, if they go through together and one of them beeps, they both get pat down - yuck).  She told her service dog to lay down and "stay" as she walked through the metal detector and then called "here!".  Her dog trotted through the metal detector and it went "beep beep beep".  The TSA pat her dog down (he was still wearing his harness, collar and leash as the law says he has to be on lead all the time and the TSA can't require the girl to take off his harness because she needs it).  After this girl's dog got lots of pets from the TSA agent, they took the girl and the dog to swab her hands.  Once this was done the girl and the dog had to wait for a long time to get their luggage.

You see, this service dog is a very special service dog who eats very special things.  One of the things he eats is probiotics so that he does not have any... gastrointestinal problems out in public.  Apparently, they turned a funny color on the x-ray, so the girl and the service dog had to wait and wait and wait as the TSA got a special chemistry kit to test the probiotics.  From now on the girl remembers to pack them in a suitcase that will be going under the plane.

After collecting their bags, the girl and the service dog were on their way!  (A very different experience than when the agents in Spokane decided the girl was a security threat despite her claims of "I have a disability" and "I have severe Tourette Syndrome" and humiliated her by going through every one of her things and frisking her while she was ticcing and on display for everyone to see).

In San Francisco, the security agents acted like they had never seen a service dog before.  And they were not nice.  The girl had to tell them she needed to go through the metal detector and before she did, Agent #1 tried to make her take off her service dog's mobility harness and leash.  "No," the girl explained nicely, "he is a service dog and I am not required to remove his gear."  Agent #1 acquiesced, the girl put her dog in a down stay, and walked through the metal detector.

This is where this story takes a turn for the worse.  The girl called her dog through the metal detector; beep beep beep!  The agents all paused and turned towards the beeping sound.  "You will need to take off his harness," they said.  "You need to send his leash through the x-ray machine," they called.  "No," they argued, "you have to take the things off!"

The girl was very upset at this point, she knew the rules but nobody around her seemed to know how to do their job.  She explained again and again, "This is my service dog.  You cannot require me to remove his gear, you can pat him down and we will be on our way."  Again, the agents all cried, "No, no, no!  Take off his gear!"  (The girl did not mention to them that they would be breaking their own rules anyway by requiring her to take off his collar and leash leaving her nothing to hold onto him with.)  One agent even tried suggesting, "Take off his collar and leash.  Can't you just hold onto his harness?"

All this arguing drew the attention of the supervisor who rushed over to see what the commotion was about.  Mortified, she told all the agents, "This is a service dog!  You cannot make her take off his gear!"  The supervisor demonstrated how to pat down a service dog (this service dog's favorite part of traveling) and then asked the girl if she needed to swab her hands.  Don't you know the rules? this girl thought as she explained that yes, her hands needed to be swabbed.  The girl and her service dog walked over to get her hands swabbed and again, the supervisor apologized for them not knowing the rules.  As the girl and her service dog walked away they heard the supervisor explaining the rules to all of the agents at the checkpoint.

In Houston, the TSA agent pretended not to see us.  There was a cry of "oh no!" as we approached the metal detector, and the girl and her service dog had to wait and wait to go through.  But nobody waved them through.  So they waited some more, there was a family with a baby going through the metal detector as well, but they were still unloading their stroller.  Surely, the girl thought, I could go through before them?  So she scooted closer.  Still, the agent pretended not to see us.

Finally, another TSA agent appeared, looking quite exacerbated.  She waved the girl and her service dog through (again: down stay, here, beep beep beep) and lo and behold, on the other side of the metal detector, poor TSA agent #1 was pressed in the corner hiding from the girl's service dog!  "He's very friendly," the girl assured the agent who was hiding, but to no avail.  The agent managed to escape through the metal detector into the body scanner and proclaimed, "I'm not coming out until the dog leaves!"  Oy vei, the girl thought.

The girl and her dog had to wait while the agent cried again and again "Animal check please!"  (Why she couldn't do it, the girl did not know).  Finally, another agent came to the girl's rescue, patted down the service dog, and away they went.  (Notice, no hand swabbing here!)

As the girl and the service dog successfully made it through their third security checkpoint of the trip, she thought to herself, Isn't it funny how nobody knows the rules and she wondered why it was that a national organization can't be consistent with their training and protocol.

* * * * *

Katherine & Owen's suggestions for traveling with a service dog:

*The TSA cannot require you to remove your dog's gear (which includes mobility harness, vest, collar, leash, etc.).  I think there is a rule about bags attatched to their gear; for example, I have ordered a bag that will attach to the back of Owen's new harness with velcro.  In it, I anticipate carrying keys, credit cards, my phone, and a few other things.  This I would be required to remove and send through the x-ray machine because it comes off easily and is more of a "bag" than required gear.  Whether you remove the gear is up to you - some people do because they feel it will be quicker to send it through the x-ray machine instead of waiting for a pat down (if you do this though, make sure you have a slip lead instead of the usual collar/leash combo as the metal will set off the detector anyway, which requires a pat down, negating the removal of the gear in the first place).  I choose to keep O's gear on because it is easier for me.  I can use his harness all the way up until I walk through the metal detector and he is there and ready to work as soon as I call him through.  Taking it off and then putting it back on through security would be very high stress for me and would leave me without my balance aid until we managed to get through the TSA.  At least this way I can hold onto the harness while we wait for Owen's pat down and while I get my hands wiped down.

*Go through the metal detector separately from your dog.  The rules are, whoever sets off the metal detector gets a pat down.  So if I go through and set it off, I get pat down.  If Owen goes through and sets it off (which he does), he gets a pat down (and let me just say, his pat down is no where near as invasive as the human pat down - Owen loves this part of traveling because he gets "pets").  If though, I am holding his leash and go through the metal detector and either of us set it off, we both get pat down.  What I do - which is what Darcie and I practiced during team training - is tell Owen to "down" right in front of the metal detector and then tell him to "stay".  I go through first (I have no idea how people "send their dogs through" ahead of them) and then call Owen through with "here".  To make life easier for both of us (so I don't have to go searching on the floor for his leash because the stinker won't hand it back to me) is tie his leash in a loose knot to the handle on his harness.  Once through, Owen and I wait for his pat down together.

*Your hands should be swabbed down.  If they aren't (like in Houston), it is a lapse in security.  The new regulations stipulate that while service dog handlers are not subject to a pat down - unless, of course, they set off the metal detector - they do get their hands swabbed for explosives (or whatever else they're looking for).  It is good practice to wash your hands before going through security *just in case*, but honestly I've forgotten to do so all three times we have been through security and have had no problems.

*Go potty right before security!  That is, take your service dog potty...  For me, once I get through security, I am not doing it again (unless it is a long travel day and we have a layover that gives us enough time).  Owen and I check in (and check our luggage) and then find a potty spot for him.  Don't trust that the gate agents (or anyone else for that matter) will know where it is, I have an app (Service Animal where to go) that gives a list of airports in the US and tells where their animal relief stations are.  For someone who is directionally challenged (like me) it is somewhat useful, but at the one airport where we didn't already know where it was, we just wandered around outside until we found some grass.  (Not to be weird or anything, but the animal relief spots are normally not clean and even if they are relatively clean, they have a lot of "good" smells and Owen doesn't want to focus anyway.)

*Ice is a-okay in Owen's book.  The first two flights we took were evening flights so Owen slept the whole time.  The third flight was a morning flight though and while he slept, he was definitely napping more than sound asleep.  He sat up and visited with me and my dad a few times and tried to follow me out into the aisle when I went to go to the bathroom (I thought he was sleeping!).  The flight attendants were superb and kept asking if we needed anything; we got some ice for O about halfway through the flight and he was happy to munch on the ice.  It helps the dogs feel less dehydrated but (as long as you don't give a lot) it won't fill up their bladder too much.  This was on a four-hour flight though where I knew he hadn't had much water in the morning and I hadn't had a chance to offer it in the airport before our flight.  On the shorter trips, I wouldn't offer anything until we landed.

*Paperwork.  Owen and I encountered no paperwork issues (except in the United lounge where we got chased down and asked for his "paperwork, ID, or vest" when they learned he wasn't a guide dog...).  The airlines are not allowed to ask me for anything if he is clearly marked (mobility harness) and if he is acting appropriately and my word is "credible".  If he wasn't marked or they felt like his behavior wasn't appropriate, they could ask me for proof that he is a service dog (I have a doctor's note and his paperwork from Heeling Allies).  However, current regulations say that if you are traveling with a Psychiatric Service Dog (PSD), you will need to provide a doctor's note.  To this I say, just don't tell them it is a PSD.  Seriously...  The rule makes no sense and I've heard of other people having their doctor's contacted by airlines looking for information (anybody ever heard of HIPPA?).  It's obviously up to the handler, but we just called the airlines and said I would be traveling with a service dog, they added him to the reservation, and that was it.  Nobody related to the airlines or security asked for anything else.  (But I had stuff just in case.  No, I shouldn't have to present it.  But I would rather present it and make my flight and file complaints later, than miss my flight because they were stubborn.)  I haven't encountered it yet, but if you have a problem, apparently the magic words are: "I want to speak with the Conflict Resolution Officer (CRO)".

*Be confident.  Square your shoulders and hold your head up high.  And act like you know what you're doing.  Even if you've never flown once.  In SFO I (smoothly) told the agent, "Well, they have swabbed my hands every time we have flown..."  Even though we had only flown once at this point.  Say things in a calm, yet firm manner (i.e.: "This is a service dog.  You cannot make me remove his gear."), even if you have to say it ten times.  Act like you know you belong even if you have never done it before.  This gives people less time to think about you and whether or not you are a legitimate team, leading to less conflict on your part.

*Practice elevators!  Ha!  I almost forgot this one.  Owen does not like elevators.  He decided they were "okay" during training when he practiced them with a dog who knew they were okay.  However, he still is not a fan.  He will try and balk sometimes at the gap between the elevator and the floor, and he braces himself when the movement starts.  Apparently, in Owen's world, elevators and plane doors are quite similar.  There is a gap in the floor and you are walking from one place where you have lots of room into (what appears to be) a very small, enclosed space.  The first plane ride, Owen balked big time and I was not expecting it.  I made a fool out of myself going "Let's go Owen, good boy, let's go, Owen here!" in this super high-pitched, up-beat voice.  And once he got on we partied it up.  The second time, I was prepared with food, and while he hesitated, with the treats he went over the gap without too much drama.  Then, we were in Texas for a while.  One day, about halfway through our trip, we went to get on an elevator and Owen hesitated.  I got him on and it started clicking in my head.  Every chance we got after that, we rode elevators (which was a lot of chances as we were at the airport dropping people off and at malls).  The third time we went to go on the plane, Owen walked on.  No problem.  We will be practicing elevators at school to make sure he remembers that they aren't a scary place.  I'm not saying every dog who has never flown needs to do this, but it seems to be my ticket to making sure Owen is happy to go on airplanes.

UPDATED TO ADD (tips from our fourth flight):

Somethings about the actual flight I forgot to mention.

*Owen and I use a mat on the planes.  Darcie recommended (and we got) an orthopedic bath mat from Costco.  It's made of memory foam and (because it's a bathmat) it is water repellant on the bottom - so if we were somewhere and there was something spilled on the floor, using the mat Owen wouldn't get wet - and has grips on the bottom to help Owen keep from sliding.  It isn't good for a service dog to be in one place unmoving for a long time (like a plane ride or movie), but the orthopedic bath mat helps a lot.  Owen loves it, he tries to beat me to it everytime I unroll it.  I have to make him "wait" (and say it like I mean it) until I get it unrolled where I want it.  Because trust me, once he's on top of it, I can't move it one inch!  This also helps Owen know where he is supposed to stay on the plane; on this last flight we took by ourselves (ie. no family members in the seat next to us in case Owen wanted to sprawl out), he tucked in the space right in front of me, barely creeping into the seat next to us.  If Owen - my big, blocky, 80-pound Labrador - can fit, most other dogs could too.

*Where you sit is a personal choice; here's what Owen and I do.  We sit in bulkhead; this is highly debated amongst the service dog community.  About half of the people will tell you that bulkhead is the best, and about half will say that it's the worst.  The argument being that if you don't sit in bulkhead, your dog has the space underneath the seat in front of you and the little bit of room under your seat.  I like bulkhead though; I fly on pretty little planes and I'm very dubious that Owen could fit in a regular seat.  In bulkhead, I can fit Owen where my feet would go and then put my feet up against the flat wall in front of us.   Before we sit down, I throw Owen's mat and whatever I want to do on the flight into the seats (usually a book and my phone).  I put everything else up into the area above the seats (as there is nothing else that will fit with Owen and me) and then I unroll his mat.  I tell Owen to "go to his place" and then arrange myself around him, afterwards moving all of my things into my seat.  We sit in the window seat - it gives us a little bit more room, and I know once we are situated there is no reason we will need to move until the flight is over.

*Preboard.  This one is short and sweet.  Make sure your service dog is on your reservation (call ahead - we forgot on this last flight and they added Owen for us when I checked my bags) and then after you get through security, go straight to the gate agent and ask for a "preboard slip".  On Southwest, it is a little blue plastic sleeve.  We didn't actually get one when we flew United because we were flying first class (so we could board first anyway), and when they called for preboarders, we just walked on anyway.  On one of the United flights the gate agent came to check with me before the flight to see if we needed assistance getting on the plane.  Which leads to our next suggestion.

*Take your time to get situated and do whatever it takes to get that.  You are a passenger with a disability who is traveling with a service dog.  I refuse to let myself get rushed by other passengers (basically as soon as the preboarders have gone through to go to the plane they will "release the masses").  If I'm travelling with somebody else I enlist their help to stand in the aisle and block people from crowding me (they can also help with putting luggage up which removes one thing I have to worry about).  When we travelled by ourselves, I purposefully put Owen in the aisleway so that nobody could get by.  We were working to get him situated and the stinker jumped onto his mat, wrinkling it up so that he wasn't actually laying on it at all, nor was he where I wanted him to sit.  I started to get him up to move him and the flight attendant asked if we were ready.  Lo and behold I turned around to see her blocking any other passengers from getting on the plane.  I was so excited.  She waited until Owen and I were ready to let everyone else on the plane; it made everything so much easier.  Don't let somebody pressure you into rushing your dog into his place; it's more important to me to make sure that Owen is situated and comfortable, than that everyone get on the flight two minutes faster.

*What to do with gear.  We've done everything; on our first flight I swapped Owen's harness out for his vest so that he was "marked".  It was a waste of time.  On the second and third flights, which were about 4-hours each, I removed Owen's harness and we put it up with our other carry-ons.  Because we were traveling with family, once the pilot gave the signal that we were "beginning our descent" my dad would get up and retrieve the harness.  I dressed Owen, putting the harness on as loosely as I could make it, and then put him back in his seat.  This worked well with somebody else there so we could maneuver around.  On our fourth flight though, I was by myself and it was a small plane.  Because it was a short flight and I knew that Owen had worn his harness much longer (like at the movies), I chose to loosen it as much as I could, and leave it on.  If the flight were any longer than it was (right under 2 hours), I would not do this.  I would likely remove it as we are getting situated, and then ask a flight attendant to retrieve it for us before we land.  I would hold onto it until the other people in my row left, then I would stand Owen up and get him dressed.

And just a word of caution; don't expect anybody to know where the service animal relief center is.  I take Owen out to potty after checking our bags but before we go through security.  I've never found an employee who knew where the grass was, so I "scout out" the situation before we head into the airport, and I make sure I have enough time to find a potty spot for Owen.  Sometimes (Houston) it can take a while.

Any questions we didn't answer about traveling?  Ask us!  Owen and I will be happy to share our travel experiences; after all, we are seasoned travelers already. :)

Priceless

3 airline tickets: hundreds of dollars and thousands of travel points

Suitcases brought with us: two for the human, one for the dog

Number of panic attacks in Texas: 0

Times we heard the cry of "doggie doggie doggie!": countless

Number of migraines in Texas: 0

Places we went in Texas: too many to count (at least 2 or 3 a day)

Number of times Owen did deep pressure tasks: (at least) 20

Keeping your sanity during a family reunion?  Priceless.

I love my family, but 10 days in one house with 8 people, one baby, two dogs, and one puppy...  It can get a little stressful at times.

Owen and I did so much and went so many places and I had no migraines and no panic attacks.  I was able to go places all day long (one day I even woke up at 5:00 with Owen and we were out until 11:00 at night!).  We went to the Galleria (think mall on steroids) in Houston, we went to church, and even went to the Nutcracker ballet!  Never could I have ever thought I would have been able to keep up with my family like that without the crashes I used to experience.

Owen did great on the airplanes, but I'm planning on making our travel stories their own post entirely.

Here is our trip, told through pictures!  I know there are more pictures somewhere and I'll add them to our facebook page when I get a hold of them.  Enjoy!
 

Luckily we were at this restaurant at a really off time because Owen was nowhere near out of the way!  The servers were really great and kept telling me not to worry about moving him because "he was sleeping".  I am still working on figuring out the best places to put Owen when we go out so that he is as much out of the way as possible; I know it's all me though.  Owen can curl up really small when he needs to!

Snoozing at lunch in Houston with a family friend - Owen attracted lots of attention here, we had people come talk to us at our table and as we were leaving I heard one man tell his wife, "See! I told you there was a dog here!"

We started playing a game when we went out places, trying to get pictures of Owen with things balanced on his head while he slept - we weren't very successful with the picture taking, but you can balance a lot on Owen!  For those of you not "in-the-know", Pappasitos is a hugely popular Tex Mex chain in Houston, the food is phenomenal and it is always crazy busy.  I was so proud of Owen here, with all the people, smells, and food on the floor, he just curled up and went to sleep!

Owen's at the Houston Ballet!  We saw the Nutcracker while we were in Houston; I was a little worried about how Owen would act with the music, but he slept through it!  In fact, he slept so well that during the first act he was whimpering in his sleep and during the second act he started snoring and grumping!  The people around us who didn't see us sit down were very confused!  The children were great, I heard lots of parents explaining that he was a service dog and was working, and I had one little girl ask me very politely to pet Owen (I had to say no as there were hundreds of little kids and I wasn't about to open that can of worms!).  The adults on the other hand, were not so great.  But I'll talk about that later.

Road trip!  My mom, Owen, and I drove out to Katy (about 20 minutes from Houston) to look at the area.  Katy has a great school district and is really good for special education and I'm hoping to apply to work there (along with some other districts) for this upcoming school year.  Owen snoozed the whole trip and when we got home he looked confused as if to say, "Why are we back home?  Did I miss something?"

 

Owen and I also had breakfast with a principal of the elementary school I went to when I lived in Houston.  It was great getting to meet with her and she is going to help me get my resume out to different schools in the Houston area, hopefully in a few months we will be back in Houston interviewing!  The tables were quite interesting at this restaurant, and there wasn't really room underneath for Owen, but he found a spot.  Wedged between the pole and the wall! (Don't worry, he didn't sleep with his head smooshed like this the whole time, I don't know what he was thinking!)  When it came time to leave, I had to move the table so he could get out!  He took the opportunity while I couldn't reach him to hoover up some crumbs on the floor.  Whoops!

Probably Owen's favorite part of the trip was getting to meet (and love on) lots of little kids.  Almost every night we had people over to my grandparent's house and they brought their kids.  This is Owen's favorite little girl "making sure he stays" while I got his dinner ready.  She then remarked while he was eating, "Wow, he's a really good eater." :)