Tuesday, December 27, 2011

Neurofeedback-Part One

The results of the qEEG were exactly what we suspected. Perrin has clinical ADHD which showed on the tests as a large red "hot" spot in his frontal lobe. There was also activity in the left brain, which is where speech/language is located, and in the area that controls movement (his tics and hyperactivity). Based on these results, Ann knew exactly where to place the electrodes during his sessions to target those specific areas with the main objective being to improve attention, focus, impulse control, speech, and even reading comprehension.
Perrin has had 6 neurofeedback sessions now. It is going really well so far, and he actually enjoys going. When he comes in, he's hooked up to a few electrodes, they pop in Scooby Doo, and he watches for 20 minutes. At first I thought he'd become frustrated when the screen faded out, but he's been really cool about it. Sheena, the administrator, explained to him that when his brain is running at the proper speed, he'll see the movie, and when his brain slows down or speeds up a little, it fades. She did a very good job explaining what to expect and how it works to him in a way that he understood. He asked her that first day if it was going to take away his tics, and she was very honest in saying that it might, but that what they were going to help with was his focus, but that it also may help with his tics a little bit. Our hope is that it will help enough with the attention and impulsivity that we can either lower his dosage of stimulants or take him off entirely, which in turn will decrease his tics.
We were told that we'd likely not see any significant changes until around the 15-20th sessions, so we're just biding our time until then. In the meantime, he's enjoying watching his videos and letting his brain do its thing.

Monday, December 19, 2011

When the schools fail

After four years of constant battles for supports, gruelling two hour IEP meetings, and weekly notes about negative behaviors, we have finally made the decision to withdraw Perrin from the public school and try homeschooling. I have grown more and more convinced that our public school is neither equipped nor has the desire to adequately support a child with Tourette's. I have held their hands step by step through all of this, going so far as calling and arranging a representative from the local TSA chapter to come in and do an inservice for the staff. I have scheduled meetings to discuss efficient disciplinary tactics that work, only to have them forgotten in the moment and replaced by public shaming into obedience. I have spent over a thousand dollars hiring an educational advocate to attend meetings where nothing is resolved, and we are repeatedly told we know nothing and have no say in our son's education.
It all started in kindergarten when, due to Perrin's intense sensory defensiveness and attention issues, the school felt he wouldn't function well in a general ed classroom filled with 25 other hyper five year olds. Since our district does not have any middle ground between gen ed and full-time special ed for a child with a disability that is not autism, we had to pressure the district into allowing us to  place Perrin in a PACE classroom, where he was in a small class with 5 other students with developmental disabilities. It was not the proper placement for him, as he does not have a cognitive disability and was intellectually capable of following standard curriculum, but we had no other option. We were told we could either put him in there or throw him into gen ed and "hope for the best." That year, his teacher was fresh out of college, and I do not believe she was prepared to educate a child with Perrin's disability. She tried her best, but halfway through the year, he was being locked in closets, restrained by 3 staff members at a time, and barely making it through the day. He left kindergarten not even knowing the alphabet. They kept him in PACE the next year, with the same teacher. He loved her, and she was perky and bubbly with an enthusiastic attitude. He was also on a hardcore antipsychotic at age 5, and medicated into compliance. They were now afraid to challenge him and push him beyond his comfort zone, so he was not taught to read. By the time we were blindsided at his IEP meeting in January with their assessment that he was ready for "mainstreaming," he still barely knew the alphabet, knew only about 20 sight words, and could only count to 20. This is far below grade level, yet they were certain they could accomodate him without him being excluded.
The student services coordinator at his homeschool sat in this meeting and told me that Perrin's OT and ST would be "push in," meaning the therapists would work with him in the classroom. I was also told that the special ed teacher would be "push in" as well. They wanted to have him in the new school after spring break.  All of the promises fell through, and all of his services were to be "pull out." His new "mainstream" education would be less inclusive than the PACE program had become by the time we did the move. I regret this decision to this day. He was not ready to leave, and since he is still a full grade level behind his peers, he is not included in any of their curriculum. He spends less than four hours a week in gen ed, and he is isolated by the gap in learning. He becomes so overwhelmed by the social chaos of recess that he gets into fights when the other kids chase him, and we have yet to get even a cursory story of any of these incidents other than the method of punishment Perrin is to receive that day.
All of this boils down to environment and resources. The general ed environment is loud, bright,chaotic, and not suitable for a child who feels everything so much more intensely than other kids. Despite even the very best efforts of a very overworked special ed teacher, he has little hope of catching up to his peers in such a competitive, test-based school. He's an easy target for bullies and already feels the isolation and disappointment from his team. It is time to shake things up. It's time for someone to take over who understands what goes on his mind and body. Someone who can provide the compassion and teaching style that he can handle in an environment where he feels safe and secure. So, until my best friend builds that commune we've been dreaming of since high school, I'll be teaching Perrin at home. Wish me luck. It will be quite an adventure for us both.

Monday, November 28, 2011

Treatment and taking risks

Tourette's is definitely not the easiest disorder to treat effectively. There is no medication currently on the market that has been designed specifically for Tourette's, though many people do find relief from SSRIs and antipsychotics. Perrin has been on risperidone, an antipsychotic, for 2 years now, and John was on haldol for many years as well. While they do help with somewhat with tics and mood regulation, you are also battling some pretty nasty side effects, both short and long term. Risperidone can cause high cholesterol and diabetes, which both run in my family, so I worry constantly about what these drugs are doing to Perrin's body. He also takes Daytrana for his ADHD, which does give him added concentration and improves his impulse control, but it also alters his personality. He goes from his bubbly and fun self to a very serious and somber kid for the 6 hours that he wears the patch. For years, we've been on this vicious cycle of medications, and for years I've been researching alternative remedies.
One of these methods is neurofeedback. I heard about this process about a year ago through some of my friends with children on the autism spectrum. I had heard that many of them had seen improvement with mood as well as ADHD symptoms. It sounded too good to be true, and at such a hefty pricetag - 2 sessions a week at $100 per session for up to 40 sessions - it really wasn't an option we truly considered. Until now.
The catalyst for this decision was hearing that neurofeedback may actually retrain the way Perrin's brain processes, and that if it works, could be permanent. I feel that, at this point, it's crucial to Perrin's quality of life now and in the future, to exhaust all possible avenues of treatment. It can't hurt him, and there are no horrible side effects that we've seen with medication. So why the hell not?
Step one was getting a qeeg done. I called and spoke with a neurologist who performs the neurofeedback at the office of Perrin's neuropsychiatrist, and he talked me through the entire procedure, what to expect, what to look for in a facility. We had Perrin's qeeg last week at Neuroconnections with Ann Rigby. Here is more information about brain mapping and neurofeedback
She was very informative and professional, and she gave me a social story for Perrin with instructions on how to practice with him. On the day of the qeeg, he had to sit still for 10 minutes with his eyes open and 10 minutes with his eyes closed. Not so easy for a kid with tics. But he and I practiced for a week before, and I explained in detail, exactly what he could expect. He was actually kind of excited about the whole thing.

Even with this tight swimcap type contraption on his head and clips on his ears, he rocked it! He really enjoyed watching his brain waves on the screen, and I gotta admit, it was very hypnotic. He had a few tics, and there would be a spike on the screen, but Ann was very good at reminding him to be still like a statue, which is the wording I used during our practices. Twenty minutes later, he was done. We get the results on Wednesday, which we are hoping will show the areas of his brain that need to be "retrained," which is the term they use to describe how neurofeedback works. Go brain! 

Saturday, October 22, 2011

A Dad's Perspective: Painful Tics and a Lack of Understanding

Our son has developed a tic where he licks/spits onto his upper arm (clothed or not) and then wipes his mouth with the length of his arm (similar to how a child might wipe their runny nose with their sleeve). He does this very frequently, and especially when reading and doing schoolwork. And it's to the point where the skin around his mouth has become extremely chapped and peeling. Having Tourette's myself, I know how frustrating my tics can be, but I'm amazed at how well he takes his tics in stride. But I can't imagine anyone looking at the resulting skin abrasions and thinking that someone would voluntarily perform these actions to themselves. So it was to my great surprise, and extreme anger, when our son informed us Friday that a substitute teacher had gotten on to him for doing his tics, saying something like "you'd better stop licking your shirt." And that this continued even after he told her this was a tic. And I know from my own experiences that this only makes the tics worse.

It seems like just when we're starting to make headway with the school and they're starting to understand our son and his condition, something like this happens and my confidence drops. I'd like to think this will get easier as he is better able to articulate his needs to his teachers, but at this point, I'm not too sure that'll be the case.

If there is one thing you should know about Tourette's, it's this:  People with Tourette's cannot stop their tics any more than you can stop a sneeze.  You may be able to suppress the urge for a while, if the urge isn't overbearing, but eventually, it's going to happen.  And the more you suppress it, the bigger it's going to be once it does happen.  The best thing to do if you're around someone with Tourette's is to just ignore the tics. It may not be easy sometimes, but it's not easy for the person doing the tics either.

Thursday, October 20, 2011

The Drug Catch 22

All traditional medication  for ADHD have disclaimers that warn you not to take stimulants if you have Tourette Syndrome. They will worsen tics and slowly turn you into Skeletor. But if you don't take stimulants, you'll have to take nonstimulants, which will make you as paranoid and anxious as a crack addict and become convinced that everyone is going to kill you. Since the tics are now constant and you have become mentally unstable, you will be prescribed antipsychotics, which will make you gain massive amounts of weight, could potentially give you diabetes, and may cause long term cognitive dulling. This is the neverending cycle of trying to treat both Tourette's and ADHD.
Perrin started taking medication at 5 years old. I was very hard core anti-meds for years, but I got an opportunity to observe him in preschool, and the behaviors I saw made me cry. He was unable to stick with any task for longer than 30 seconds and ran around the classroom with no rhyme or reason. Teachers found it impossible to teach him, and by kindergarten, he was unable to maintain focus long enough to learn the alphabet. I couldn't stand by and watch him flounder, so we put him on focalin for his ADHD. Over the next 9 months, he became thinner and thinner until we could see his rib cage. He rarely ate, and he lost a lot of that joy that our Perrin has. We also saw a huge increase in his OCD symptoms and tics. He was chewing large chunks of skin off of his fingers, and we had to keep them bandaged, so he couldn't hold a pencil.  In school he would gather up all the papers in the room and tear them up. He became obsessed with what John and I ate for supper and repeat the same questions over and over again until we gave him the answer he wanted, which was not always the obvious answer.
In January 2009, we tried prozac in the hopes that some of his aggressive anxiety would be helped. What we actually saw was mania so severe we had to take him out of school for a week. The first evening of mania was a nightmare. He jumped off his bed and hung from his ceiling fan. He jumped up on his window sill and tried to push the window out. He ran around the house smashing things and laughing this insane laugh that frightened me to my core. He looked and acted like a cornered animal for over 24 hours, and I can still vividly recall trying to hold him down in the bathroom floor so he wouldn't hurt himself and thinking he was going to break my arm. We stopped all meds.
That was when he was diagnosed with early onset bipolar disorder and prescribed risperdal, which is an antipsychotic that is often prescribed for people with schizophrenia and seizures. To this day, almost 2 years later, I credit this medication for saving our lives. For the first time, he was able to function in a classroom without leaping off of desks and biting his teachers. I was no longer getting phone calls that he had to be restrained or that he had peed in the middle of the classroom floor. Over the next year, he was mostly normal. And by normal, I mean functional. However, as so often happens with antipsychotics, he began gaining a lot of weight. He was eating constantly to the point where we had to put locks on the cabinets and refrigerator so he didn't sneak food when we left the room. My once highly energetic and athletic boy had become lethargic and physically awkward.
It was at this time that he was spending more time outside of the special ed classroom and interacting with his typically developing peers. He was behind quite a bit academically since kindergarten was a useless year, but he was finally learning. He could write his name, and learned the alphabet. He was even beginning to read and memorize sight words with the other 1st graders.
So he was emotionally stable now, and we had our happy kid back. He was also 15 pounds heavier, still had almost no impulse control, and couldn't focus long enough to read a 10 page beginner book.
Over this last summer, we tried focalin again, which increased his tics again. We put him on tenex to help ease some of the tics, and he became paranoid and angry. He hit kids for coming too close to him because he swore they were trying to kill him. He thought there were strangers coming in his window to kill us all. We started a new ADHD medication, which caused him to rub his face on his shoulders so hard it left his cheeks red and raw. We increased the risperdal to help with that tic. Now that he's back on stimulants, he has lost all the weight he gained from the risperdal, so he's now extremely skinny again.
We are now at the point with the current meds where he's able to complete his schoolwork, but he's not bubbly anymore while he's on it. He is just here. He wakes up so hyper that he growls and can't sit still long enough to finish breakfast, and then 3 hours after he puts on his Daytrana patch, he's a completely different child. He's serious and never smiles. His tics are so complex that it takes several minutes to get through each tic. He struggles so much with his mood and gets very angry very quickly. When they wear off, he again returns to the hyper, growling child who makes constant explosion noises and can barely carry on a conversation, but he's happy.
So this is the cycle of medications a child with Tourette's sometimes has to go through. There is no medication for Tourette's, and every psychiatrist we've had has just guessed at what may work. It's a constant tweaking of dosages and hoping each time that it will help. I have no idea what long term effects any of these experimentations will cause him, and it pains me that I have to rely on guesswork and a medical community that still doesn't know how to fix it.
But, at the end of the day, after the pills have been swallowed, and the red patches of skin that cover Perrin's back from the Daytrana are slathered with lotion, Perrin smiles and says "I had a great day with you today." And that's why we keep fighting. For more great days.

Wednesday, October 19, 2011

My man

I always struggle with putting my feelings for my husband into words that can fully embrace what he has meant to me. For those who know me well, it's no secret that when I met John back in 1999, I was at the height of my mental instability. I wasn't diagnosed with bipolar disorder until after Perrin was born, but there were obvious signs that I was unwell. I was a girl in tremendous pain, both physical and emotional. I had been discharged from the Army after a year of the worst hell I can imagine, and I felt like I had failed at being human. I had made way too many major life decisions in a very short time, and my edges were peeling. However, in the week that I met John, I was in my manic pixie party girl phase, and life was just about finding the fun and excitement in a desperate attempt to keep the crazy at bay. I believe that had I not been manic, I probably would've never caught his eye, so I am thankful for my bipolar brain for that bit of serendipity.
John changed my life. He was this mellow 20  year old guy who took himself way too seriously, but he swooped in and gave me a quiet mind for the first time in my life. He cleared up the muddles and loved being alive. He found this flicker of life left in me and ignited it. He helped me quit drinking excessively and gave me hope that allowed me to stop taking so many painkillers. He helped me face the scariest of my demons and was a safe haven, a warm place for me to fall. And I fell many times. I still fall now and again. And he continues to catch me. My crazy is caged, but when it bats against the walls, he helps me tell the monsters to fuck off. He is my anchor in the storm.
He is the most amazing father that a child could hope for. He doesn't hold back his love and affection for our son, and seeing that unconditional adoration in his eyes when Perrin hugs him is what I live for. He is the type of man that all boys should aspire to become. He can actually empathize with our son when his tics are bad or he's feeling sensory overload. They have a kinship that is undeniable. I feel unbelievably blessed that this is the man who chose to be mine, who chose to be the father of my child.

Monday, October 10, 2011

A Dad's Perspective: The Contagious Tics

One thing about Tourette Syndrome that has always intrigued me is how thinking/talking about TS or being around others with TS will cause my tics to increase. I recognized this very early on, when talking about my tics would markedly increase their frequency and intensity, or attending a TS support group would have similar affects. I've always just taken this as a constant, and have heard from others with TS that they have similar reactions.

But it didn't just end there. I discovered that, after spending significant amounts of time together, my wife and I start to "steal" each others' tics. For the most part, we have different tics, and, as is typical with TS, those tics change over time. However, sometimes when one of us takes on a new tic, it's something that the other of us has been doing for some time. We've made it a joke, usually claiming "hey, that's my tic - give it back" upon noticing the other "stealing" a tic.

In the last couple years, as we been paying particular attention to our son's tics, I've noticed a new phenomenon in myself. As my wife sees new tics developing in our son, particularly if it's one that has the potential of being a distraction in school or causing physical harm, she'll describe the new tic to me. What I've found though, is that if she also acts out the tic, I almost always start doing the tic myself. Sometimes it just one or two times, sometimes it's for much longer periods, but it seems to only be when she reenacts them and not when she just describes them verbally.

It really is strange how the mind works.

Sunday, September 25, 2011

The Dark Side

It's all very well and good to keep the mantra of "I have Tourette's, but Tourette's doesn't have me." It's all very sweet and inspiring to put on a smile for the world and talk about how we can overcome any obstacle that life can throw at us. And while all of that is true, and I do try to live my life and teach Perrin to live his life while not letting Tourette's define who we are, I gotta be completely honest. Sometimes, in fact, quite often, having Tourette's just sucks. And as much as I'd like to say that raising a child with Tourette's is a piece of cake, I'd be lying if I said it didn't sometimes frustrate me to the point of tears.
Yes, the three of us are a very happy, well-adjusted family, and we make the most out of every situation that gets handed to us, but sometimes I succumb to the dark side of Tourette's. Because in addition to tics, I suffer from depression and sometimes quite severe OCD.
I am incapable of having a conversation with someone without dissecting it word by word later when I'm alone and critiquing every thing I said or did. It's often quite difficult for me to watch a movie or even listen fully to a conversation because I am either typing out each word on my invisible keyboard or writing the words with my tongue on the back of my teeth. Yes, the tics are a pain in the ass, but as many people with Tourette's will tell you, it's often the "mental tics" that are the most crippling. I frequently have a hard time falling asleep at night because my brain simply can't shut off. It's almost as if there's a TV in my head, and when I close my eyes, my brain flips through the channels at lightning speed, and a constant barrage of images flash in my mind.
I do not have interests or hobbies. I have obsessions. If I hear a new song I like, I have to listen to it at least 100 times on a loop until even I'm sick to death of it. John gets annoyed with me because when I discover a new musician or TV show that I like, I talk about it ad nauseum until even I wanna punch myself in the throat. I repeat the same points over and over in a conversation because the first time I said it, it either didn't sound the way I wanted it to sound, or I had the words in the wrong order.
These things make it difficult for me to maintain friendships, because I quickly fear that I'm being obnoxious or inappropriate. I do not understand normal social protocols for many circumstances, and I have offended people on numerous occasions without understanding where I went wrong.
But above all this, it is the depression - a mysterious pit of despair - that I struggle with. I have always been somewhat melancholy, and I have never been famous for my winning smile, but overall I would say that I am usually content, if not happy. I am not entirely sure I am capable of sustaining any real happiness, or happiness as it is usually defined.
I see this same moderate contentment in Perrin, and I suspect he will be a lot like me. He doesn't laugh or smile often, and I have seen him fall into fits of sadness that linger and cannot be cheered. It is either one extreme or the other. Perrin, too, has obsessions that drive me a bit bonkers from time to time. He repeats himself and turns a simple bedtime routine into a 45 minute ritual that is maddening. He is intense, and his mood can shift from happy to furious in a matter of minutes with the right trigger. I've watched him become so manic that he nearly jumped out his 2nd story window. He has become so withdrawn that he turned his chair away from his classmates and refused to speak to anyone for weeks at a time.
These are the dark sides of Tourette's. I don't talk about them often, and I want so desperately for it not to affect our lives the way that it does, but to deny these feelings is to be dishonest about what it truly means to have this disorder. I will always try to look on the bright side, be outgoing without being offensive, and smile through real and imagined heartaches. I will continue to teach Perrin the importance of recognizing his own emotions and trying to find outlets for them. This is how we deal.

Monday, September 12, 2011

The power of acceptance

To be able to accept yourself just as you are is a powerful thing. Perhaps the most powerful thing a person must do. A person diagnosed with Tourette's has a hell of a lot more to accept than the average person. They have to accept that they are living in a body that will betray them. That they will sometimes feel trapped inside their own mind. That people will stare at them. That they may never feel comfortable in their body. That some people may fear them or judge them.
And at 7 years old, my son has fully embraced his Tourette's. He doesn't yet feel the weight of that acceptance, but he is now admitting that he has Tourette's and even talks about his tics with us and to his friend who also has TS. He talks freely about his tics, is able to talk with his therapist about what it feels like to need to tic, and has become his own advocate. The week before school started, I asked him what he'd tell other kids if they asked him why he was moving around so much or sniffing. He just looked at me and said, "I'll just tell them these are my tics, and I can't stop doing it."
I am often amazed at how brave and awesome Perrin is. He has to work so much harder than the other kids just to read a book because his tics slow him down so much, but he doesn't give up. He gets frustrated, but he is learning how to push through the exhaustion that his tics cause him.
If at this young age, he's able to accept who he is, I am more optimistic about his future than ever before.

Tuesday, August 23, 2011


Copralalia,  involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks, is a VERY rare symptom of Tourette Syndrome. In fact, only 10% of people diagnosed with TS have copralalia; however, many of us living with TS have had to deal with the prejudice caused mostly by media sensationalism. You've probably seen talk shows or movies that portray people "suffering" from TS who randomly shout obscenities or use highly offensive racial slurs. While I can understand the fascination the rest of society has with this tiny percentage, it is very important to me to debunk this assumption that we all have it.
While looking on cafepress.com for TS advocacy tshirts, I came across a lot of shirts with this sort of thing.

While I have a very good sense of humor about my TS, and John and I make jokes and tease each other a little bit as a coping mechanism, I would never wear a shirt like this. It would simply add fuel to the fire of a society that still kicks people with TS out of restaurants, movie theaters, and libraries. It keeps us separate and simply reinforces the stereotype that people with TS should be avoided.
My son just started 2nd grade, and he currently has a lot of motor and vocal tics. I have to go in every year and discuss with his teacher and the many support staff members that they do not need to worry that my son will scream "Fuck you!" when someone bumps him in the hallway.  
I certainly don't mean to demarginilize those with copralalia or make the assertion that they are making it harder on the rest of us. They have to deal with challenges the rest of us experience on a smaller scale. Being twitchy gets quite a lot of side-eye, sniffing usually evokes a lot of concerns for our health, and when my son snorts other children think he's pretending to be a pig and laugh. But I have actually had people back up with fear in their eyes when I announce that my son has Tourette's. Until the media representation of Tourette's is accurate, the stigma will only continue. If you're looking for accurate portrayals of people with TS, check these out.

Phoebe in Wonderland
A brilliant movie about a girl diagnosed with Tourette's. Watching this movie was like watching a moment in time in my own life, and it haunted me and made me cry and made me squeeze my son and tell him just how extraordinary he is.

I Have Tourette's But Tourette's Doesn't Have Me
These kids are badass! It's about acceptance. It's about education. It's about overcoming.

Wednesday, August 17, 2011

A Dad's Perspective: Disclosing Tourettes in the Workplace

Throughout my life, I've struggled with if, when and how to tell the people around me about my Tourette's.  In middle and high school, my tics were visible enough that there was no "hiding" them, so I there people around me knew, even if they didn't all have a label for it.  But when I left home for college, I had a clean social slate and my tics were subsiding by that point, so I opted not to be forthcoming about my diagnosis. I'm already an introverted personality type, so I didn't want to put up this additional social barrier, as I perceived it.  I also had a fear that publicly acknowledging my TS would poison my career opportunities (a fear I retain today).  Combine my tics with widespread misconceptions about TS, and I was scared people wouldn't hire me if they knew.

So, for the first decade of my professional life, I was silent about it. Given the wax/wane nature of Tourettes, there were times when it didn't matter.  But there were definitely times when stress levels were high, or stars were misaligned, or whatever causes these things, when my symptoms increased. I got very good at redirecting my tics into more "socially appropriate" gestures, or finding ways to postpone them ("postpone", not "suppress" - they usually came back with a vengeance that evening). But I'm sure my coworkers knew something was up.

I assume that most of the people around me thought I had "nervous tics"' or drank too much caffeine (which I do), or had bad allergies (I do at times, but sniffing and nose twitching/touching are also my most prominent tic). But I've never asked what people thought, so don't really know. Hell, given that I'm sniffing a lot and jittery/never sitting still, for all I know, people think I have a coke habit.

Then in 2008, I started working on a very stressful project that lasted two years. During this same time, my son's tics started to become very pronounced. This drove my tics to a level they hadn't been to since my teenage years, and it became very difficult to hide them. I again started in earnest the internal debate whether to disclose my condition or not. At this point, I had talked to my coworkers about my son's TS, so it's very possible they connected the dots on their own.  But I was in a consulting role, at a level which put me in front of client C-level execs and "decision makers". So, again, the fear of potential impact to my career kept me from putting a name to the assumptions. I don't know if this was the best decision - it's not like I could ask "would you hold me back if I told you this" and get a straight answer. But when it came down to it, I thought about the case where staffing decisions were being made, say for a potentially influential client, and the choice of who would lead the engagement was on the table.  What I feared was that the role would go to someone else 9 out of 10 times because you wouldn't want to put someone who tics as the "face" of the company. Again, I don't know that this would ever have happened, or that it would be a conscious bias.

After a couple of years, I left the consulting gig for an "industry" job.   In this case, I knew a couple of the guys on my new team, having worked with them before, and my role is not a client-facing one. One of the guys on my team that I knew also has a tremor, which also waxes and wanes. From what I could tell, people didn't treat him any differently because of it. I also have overheard someone in the office with a very pronounced stutter, but his coworkers were patient with him and acted as if it weren't there. All if this made me think that I'm ready to let go of this fear I have of disclosing my TS.  People I work closely with are going to notice the tics anyway, so why make them guess what's behind them.  Their assumptions are likely worse than the truth anyway. And how can I help my son confront his TS when I'm hiding from mine?  So I decided that if the opportunity presented itself, I would mention it. I wasn't going to force the conversation, but look for a natural place in conversations to throw it out there. And that eventually came while having a couple drinks with close coworkers on evening.  Now I just need to get more comfortable with the idea of being more "public" with it.  

Monday, July 25, 2011

To my mom

"Stop doing that!
"You're only trying to get attention!"
 "You're making too much noise!"
"Be still!"

Most kids with Tourette's have heard these phrases more times than they can count. People without TS simply cannot understand. You can say, "I can't help it" a hundred times, but unless someone actually has TS, they usually don't believe you.
I knew something was different about me when I was 6 years old. I had what my mom used to refer to as "bunny nose," where I'd twitch my nose like a rabbit. I think everyone thought it was cute at first, but over time, I'm pretty sure it drove my folks nuts. I do remember them telling me to stop doing it and accusing me of trying to get attention away from my little sister. I tried to explain that I couldn't stop, but no one believed me at first. That tic eventually evolved, and I began to stick my shoulder blades out as far as they would go. I used this to impress the neighborhood kids, who ooed and aahed over this freakish trick of mine. I must have been exhausting.
At no point in my childhood did I get a diagnosis. I learned to suppress my tics until I was alone in my room, and the depression and OCD that came along with just made me appear bookish and a good studier. I was a miserable child, always feeling misunderstood and mostly alone.
And here is where my mom comes in. She treated me like I was perfect. I was no different, no better, no worse than my two younger sisters. We were all unique and very different from each other, and she treated us as the special little snowflakes she thought we were. I was more artistic and free spirited, Jen was serious and brilliant, and Steph was athletic and funny. She encouraged me to write, to sing, to dance, to be who I was. There was no judgment, no criticism, just unending and unconditional support. Her only expectation for me was for me to be happy. That's all she cared about. "Do something that brings you joy," she told me over and over again. When I was bullied, when I was sad, when it felt like the world would collapse around me, she always said, "This too shall pass." And it always did.
She allowed me to dye my hair when I was 14 because she believed in self expression.
She allowed me to paint my bedroom this insanely bright yellow because it cheered me up.
She allowed me to dress however I wanted as long as I was following the school dress code.
She taught me that being weird or different or strange was not only okay but far superior to being what someone else considered normal.
She came to school and screamed at my teacher because she was treating me unfairly.
She was a warrior for me, and I have never gone a single day of my entire life not feeling loved.
And she never knew I had Tourette's.
So thank you, Mom, for having the patience, compassion, and humor to navigate the minefield that was me. If I'm half the mother you have been to me, I will consider that a success.

Wednesday, July 13, 2011

The ADD Morning

I begin my day with the relaxing sounds of the ocean, slowly lifting me from my dream state into a bright new day. Oh, and by relaxing sounds I really mean the howler monkey screeches of Perrin bouncing on my chest shouting "WAKE UP!!!" directly into my face.  His awakening resembles what I imagine it looks like to watch someone take a speedball. He comes barrelling through the house for about 20 minutes, a little Tasmanian devil with no purpose other than to get as much sensory input as possible. He picks up a toy, flies it around for a bit, throws it on the floor as if he suddenly forgot what it was, moves on to the next. He likes to do experiments and his "work" first thing in the morning. He'll just randomly say to me, "I need scissors, tape, and an airplane." He then proceeds to tape up the elliptical machine, attach the airplane to it, and then step back to admire his manic genius. He's typically so engrossed in these activities that he forgets to eat, so 30 minutes before school I have to follow him around with food suggestions or just make something, set it on the table, and hope that the scent of food somehow sends his body floating towards it like a Looney Toons cartoon. Then the true work is to be done.
20 minutes before school I begin the "It's time to get ready for school" routine.  It goes a little something like this.
Me: Perrin, it's time to go brush teeth. Go upstairs and do it.
Perrin continues his work, either ignoring me completely or truly not hearing me. I repeat this command directly in his face. He begins to move up the stairs. He reaches the top of the stairs.
Perrin: What did you tell me to do?
Me: Brush your teeth.
Perrin: I have to take off my jammies first.
Me: Okay, then brush your teeth.
Perrin removes his jammie shirt, then is distracted by something shiny in his toybox and proceeds to dig it out.
Me now in his room: Perrin, take off your shirt, then brush your teeth.
Perrin goes to the bathroom to brush his teeth. He puts the toothpaste onto the toothbrush and then drops the toothbrush onto the floor. This pisses him off, so now he insists he can't brush his teeth.
Me ready to jump out the window: Perrin, pick it up, rinse it off, and BRUSH!!!
Perrin, calmly, like he's trying to talk me down from a ledge: Mom, I am brushing. Chill.
Perrin starts to brush his teeth, notices something moving out the window and must investigate. The toothbrush is now dangling out of his mouth as he opens the curtains to peer out.
Me, the blood pumping in my ears: BRUSH!
Perrin, having brushed 5 of his teeth in 2 minutes, then is told to get dressed. This must be told to him step by step. Perrin, put on your shirt. Shiny object beckons him, and he stops. Perrin, put on your shorts. The neighbor walks by our window. Perrin runs to the window, shorts still in his hand. Once he is satisfied that nothing exciting is happening that he is missing, he puts his shorts on. Perrin, put on your socks. Perrin then puts on one sock, upside down, and then wanders into the kitchen like a newly resurrected zombie that doesn't quite remember how to use his limbs and dreamily asks if he has eaten breakfast. He then remembers that he hasn't yet struck me down with his light saber and lunges for it, going to the dark side, sock completely forgotten.
Me: Perrin, put it down, get over here, and put on your sock.
Perrin, laughing at me as if I'm the most ridiculous creature on the planet: Mom, you're being so silly.
Me, totally won over by his cuteness and his complete lack of regard for anything: Come give me a hug and then put on your sock.
At the end of this insane song and dance, Perrin is dressed and ready for school, seemingly unaware that his mother is on the edge of insanity. I drop him off at school, drive home, and stare at the clock wondering if it is really too early for a mojito.
And then it begins again tomorrow.

Tuesday, July 5, 2011

Life in the bubble

We do not do "normal" things very often. We don't go to festivals or parades or parties with lots of people. We have created a bubble of comfort from which we rarely emerge. To others, it may seem as though we are sheltering Perrin or isolating ourselves from the rest of the world. In many ways, this is probably true. We are sheltering him, and ourselves, from the chaos that frequently makes both John and Perrin completely shut down. I have to take a threat level assessment before we go anywhere to determine if any of us will be able to make it through an activity. We can't go for a family bike ride around the block because Perrin is convinced that he will crash into a bush and is therefore terrified. Because of this, he is missing out on a childhood rite of passage that I'm beginning to think may not be worth the drama. We were invited to a neighborhood BBQ thing yesterday for the 4th.  We had to leave after 2 hours because Perrin had become so convinced that the other kids were trying to kill him that he started to hit anyone who came near him.  He has become afraid of everything. We haven't watched a new movie in over a year because the last Shrek movie scared the shit out of him, and now he thinks every movie will have a bad guy in it. So we don't go to theaters anymore, which is something that he used to love. The fear makes our bubble smaller and smaller. Trying to bust out of that bubble usually ends in tears, and so I have to ask myself every day, "Is it worth it?" Is being a part of the world worth the suffering it causes? Am I making my son stronger by pushing him to do these "normal" things so that he can adapt or am I causing unnecessary trauma? Is the world worth popping the bubble?

Wednesday, June 15, 2011

Breaking the news

Perrin is 7, and along with Tourette's he also has OCD, SPD, ADHD, a mood disorder, an auditory processing disorder, and a learning disability. That's quite a bit for a child to deal with, so you can imagine how excrutiating a task it is to break this news to a child who really has no other interest in his life but to turn into a Transformer and watch "Ant Bully" on a continuous loop.
The discussion really began about a month ago when John and I were talking about our own tics one day, and Perrin casually asked, "What is Tourette's?" Simple question with a not so simple answer. John, being the rock star that he is, answered that it was this thing that some people have that makes their body do things we really don't want it to do. That was satisfactory at the moment, but when Perrin's teachers told me that some of the kids were asking why Perrin was sniffing and jumping at school, we realized that it was time to inform Perrin of his condition so that he can advocate for himself. Knowledge is power, and I want Perrin to have as much power over his own life as possible.
I checked out a book from the library that I felt described TS at a level that he could understand but that also didn't make it out to be this earth-shattering, debilitating disorder that a lot of media likes to portray it to be. The main character is even portrayed as having a good sense of humor about some of his tics, just as we do. After reading the book, I looked at Perrin and told him "Just like Nathan in the book, you have Tourette Syndrome, but Dad and I have it too, and it's just something that we have to live with. Sometimes we'll have a lot of tics, and sometimes we won't." I told him that when he snorts or punches his fists or jumps, that those were all tics. I tried to present it in a matter of fact, almost nonchalant way so that he didn't think it was dire or horrid. His response was, "I don't have Tourette Syndrome." He then got up and walked away from me. I admit my heart sank a little bit, because at that very moment I felt like I had taken something away from him. I had destroyed the image that he had that he was normal, just like everybody else. It was like I was hanging a bright neon light over his head that would flash "I am different!" for the rest of his life. Sometimes self-awareness is just shitty. I don't know where we'll go from here. I know he listened, and I know he gets it. I know denial is a natural part of the process of accepting what we are, but I hope that someday he'll feel comfortable talking with John and me about his tics and not hate us for passing this little genetic gem onto him. Only time will tell.

Tuesday, June 14, 2011

The Family That Tics Together Stays Together

My husband, son, and I all have Tourette Syndrome. We are quirky, fun, and often frustrating.
This is our journey through the struggles with tics, medication, and the rest of the world.
Our story begins with me and John. We met in 1999 when he and my best friend attended the same college. John was shy and adorable, and I instantly knew he was my mate. When we first began dating, he sat me down and got this intensely serious look on his face - you know that look that makes women terrified that the guy they're dating is either married with 3 kids, a member of a cult, or a militant vegetarian. When he told me that he had Tourette's, I almost laughed and just said, "Me too."
That was the first time in my life that I felt someone actually understood who I was, right down to the way my brain works. It was the happiest day of my life. I was no longer alone, always wondering if what I was feeling or thinking was normal or if I truly was a freak.
Our life together isn't always sunshine and rainbows. Two people living together with TS can be extremely challenging. We often share tics, and stress can worsen them substantially. If John is having a hard week at work, his tics will bleed into mine. We both have OCD but have different obsessions. I have spent 13 years trying to convince John that the world would implode if he left his socks on the floor, and he has spent 13 years trying to convince me that those socks are holding the universe together. I have a mood disorder which makes me somewhat unpredictable and overemotional. John could teach Cylons how to be more stoic.
And then came Perrin. While neurotypical people worry about their kids having 10 fingers and toes, we were having hours long discussions of whether or not we should have a child whose body would constantly betray him. Was it fair to bring a child into this world knowing he would be different, stared at, ridiculed? Who would struggle to write his name or tie his shoes because his brain had a very different idea of what he was supposed to be doing with his hands?
In the end we realized that our son would have the supreme advantage of always knowing his parents understand him. He will never be alone. When he is having a rough day with his tics, he will always know that Mom and Dad KNOW what he's going through. Empathy can be a powerful thing, and knowing that John feels what I feel has made living with this condition much easier. We still get depressed when kids pick on Perrin or exclude him because he's different. We still get depressed when we see how much Perrin struggles with school. But every life is a journey through pain as well as joy. It's about navigating through the obstacles that the world will throw at you and embracing the things that make you unique and even a little bit weird. John, Perrin, and I are on this journey together, and with the love that we have for each other, I have no doubt that we, as well as anyone else out there with TS, can accomplish great things.