So this is coprolalia

One of the most common misconceptions about Tourette Syndrome is that the main symptom associated with TS is cussing.  If you've read my previous posts, you know that the correct term for the use of words, phrases, and gestures that are deemed socially inappropriate is called "coprolalia", and that coprolalia is only present in about 10% of TS cases.  Tourette Syndrome is the presence of both motor and vocal tics, which does occasionally (but not in most cases) include coprolalia.

Sadly, coprolalia has made an appearance in our home.  Yesterday, Monster Man started with a sound of air blowing through his teeth.  Later in the afternoon, it turned into a "fu fu fu fu fu fu" sound.  He was trying hard not to let the full word come out of his mouth, and he was doing a good job holding it back.  It was a struggle for him, knowing that he needed to say a word that he knew he wasn't allowed to say.  He kept holding back, kept trying to find other things to change it into, but he reached a point that he could no longer keep it in.

Around lunch time today, I received a phone call from the school nurse.  Monster Man was in the clinic (where he's been spending a lot of time since the school year began), and he was having a major tic episode. No big deal, we thought.  She gave him some anxiety medicine and sent him back to class, our current plan in hopes to help him make it through the school day.  About an hour and a half later, I received another phone call.  His tics were getting worse, rather than better, and he'd been taken to the clinic in a wheelchair. This has also been a little more common lately, but it was also a sign that it was time for me to pick him up from school.  When I picked him up, I was greeted with the news that the "fu fu fu" sound had morphed into the word he was trying so hard to avoid saying.  In other words, coprolalia had officially made an appearance.  

It seems lately like each of his bad tics gets replaced by another.  It's heartbreaking to watch him struggle with these tics, and they can even be scary at times.  This latest tic, however, has been one that has hit us harder than any other.  Monster Man is upset that he's saying something that he would otherwise get in trouble for saying.  It's only been about an hour since he got home, and he's already shed quite a few tears of frustration.  I'd be lying if I said it hasn't brought me a few tears myself.

We shall see where this latest tic brings us.  We're working on replacement words, hoping these will help him for now.  In the meantime, prayers are greatly appreciated!

Explosive Tic Episodes

I mentioned recently that Tourette Syndrome isn't for wimps.  I didn't know when I wrote that article that Monster Man's TS would only get worse from the punching tic he'd developed that was hurting him so badly.  It's amazing how fast things can change.

Seventy-two hours ago, Monster Man was on his way home from his third day of his freshman year of high school.  He'd suppressed his tics throughout the day at school.  When he got home, he let loose his punching tic.  It would come in spurts, lasting several minutes every hour or so.  Nothing new.  We'd seen this pattern in him several times in recent weeks.

Forty-eight hours ago, Monster Man was on his way home from his fourth school day.  When he got home from school, I learned that he had been unable to suppress his punching tic the entire day, that he'd finally let a couple of punches loose as his class was leaving the room at one point during the day.  A little concerning, but still not too out-of-the-ordinary for him.  He'd had to let loose his other tics in the past from time to time.

After all the kids were home and we'd had dinner, Georgia Boy and I left the kids home alone to go return a Redbox movie, pick up a snack for Little Man for school the next day, and get Georgia Boy's hair cut. While his hair was being cut, I called home to ask Monster Man about a homework assignment  (thank you, Remind 101 app for sending me a message while we were out).  During our conversation, I noticed Monster Man was making an unusual sound, but didn't think a lot about it at first because he tends to make unusual sounds as a result of his Tourette Syndrome.  It wasn't until he said the words "I can't stop ticcing" that I began to worry.

As soon as Georgia Boy's hair was finished, we rushed home.  We found Monster Man doing his punching tic in combination with another tic - one that looked very much like a seizure.  He would shake violently, stop to do his punching tic, and then start shaking again.  It was both scary and heartbreaking to watch, and we were left feeling completely alone and helpless because we didn't know how to make things better for our son.  We desperately wanted to help him stop, but nothing seemed to work.  After two medications, time spent talking with his girlfriend (who also has TS) online, and almost three full hours, he finally calmed down enough to go to sleep.

Yesterday, I tried waking all the kids up for school.  Angel Baby and Little Man both got around for school (rather grudgingly, I might add, due to the lack of sleep they'd received while their brother was having his explosive tic episode), but Monster Man struggled to wake up.  Every time he opened his eyes, he'd start shaking violently again, then fall asleep immediately.

He ended up missing school. Instead, he had a visit to his neurologist for a change in his medications.  He started improving a little throughout the day, but never really stopped (it's a rare occasion to be tic-free for any length of time).  He took his new medicine combination at bedtime, and he slept really well last night.  He woke up this morning ready to return to school.

Sadly, he didn't make it through the school day.  I received a call just after 1:00 this afternoon that he was in the clinic with another bad tic episode.  His teacher had tried walking him to the clinic and had to get help to get him into a wheelchair to be wheeled to the clinic after he fell to the ground in his explosive tic episode.  I made the thirty minute trek to his high school to pick him up, where I found that his sister had been called from her class to help calm him down until I could arrive.

He's doing a little better now that he's home, but he still keeps going into the tic that looks so very much like a seizure.  It's amazing how just seventy-two hours ago, we were praying for relief from his punching tic, and now we're at the point that we just want him to be able to have a good night's sleep so he can get a rest from the pain these tic explosions are causing him.

"Tourette Syndrome Isn't For Wimps"

Before I get into my post, I want to apologize for my absence from this blog for the past year.  A number of things have kept me from being able to write.  That will be explained on my other blog, Random Thoughts From A Stay-At-Home Mom.

I want to thank one of my friends for the title of this latest post.  When I saw her post this sentence on Facebook this morning, I knew that it was exactly what needed to be shared today.  This simple quote from my friend explains how I've been feeling the past couple of days.

Last summer, Monster Man and Little Man attended Camp Twitch and Shout.  It was Monster Man's third year, Little Man's first.  The experience was wonderful for both of them, and we felt we were so blessed to have the opportunity to send them to such an incredible place once again.  It was a place where they felt that they could feel like they were just like everyone else, a place where they could feel accepted.

Perhaps the hardest part of sending kids to a Tourette Syndrome camp (or any group setting for those with TS) is that they 'tic shop'.  This is where they pick up new tics from others.  In Monster Man's case, it meant that he came home last summer with three new vocal tics: "Happy, happy, happy", "That's a fact, Jack", and "Yo, my name is Greg!" (his name is not Greg, so we got a kick out of that one).  By about the third day after camp, the new tics had lessened greatly, typical to 'tic shop' fashion.  By the end of the first week home, they had practically disappeared.

The boys attended Camp Twitch and Shout again this summer.  Monster Man's fourth year, Little Man's second.  This time, the new tics that Monster Man picked up were not as easy-going as the vocal tics that he picked up last year.  He instead picked up a punching tic, one where he grunts rather loudly while repeatedly punching.  It's not that he's punching others, but instead that he's punching tables, desks, walls, cabinets... anything hard that helps him feel the sensation his body is looking for.  We're trying to encourage him to punch softer things, like pillows, the couch, or the bed.  While it's helping him to relieve the urge to punch, it isn't fulfilling the sense of pain that his brain seems to be looking for.

Instead of decreasing in frequency and intensity like typical 'tic shop' tics, this one actually seems to be increasing.  I actually had to take him to the doctor today to have his bruised, swollen wrist checked and to have his meds temporarily increased in hopes of helping him to get past this particular phase with his tics.  It is heartbreaking to see him go through all of this pain and frustration, sometimes having tic 'attacks' that last 30 minutes with little break for his body to calm down.  It is exhausting for him, and he is frustrated to know that he can't control this urge to punch right now.

Sadly, this punch tic seems to be fairly common, and it's not the only tic that can end up hurting the ticcer. Some beat their head, their elbows, or their shoulders.  Some kick.  Some bend their bodies in positions that hurt, or forcefully push their bodies into positions that sometimes even cause broken bones.  Some people with TS have pseudo seizures, which look much like a seizure but stop just as quickly as they come on.  Some go into a temporary paralysis, unable to move their bodies as they become limp and just fall to the ground.

Sure there are tics that can make people laugh.  We came to enjoy "Yo, my name is Greg!" in the short time it was in our house.  Some can make people smile, like chirping, blowing kisses, or saying "Happy, happy, happy."  A fellow TS mom recently commented on how big of hearts our TS children have.  They can be such loving children, and they are true blessings.  But it is important to remember that "Tourette Syndrome isn't for wimps".  Our kids really do go through a lot of pain with their experiences.  And that is exactly why we will continue to fight for awareness of what Tourette Syndrome really is.  Our kids shouldn't just feel accepted and 'normal' one week a year.  They should have that acceptance everyday, everywhere.

Tourette Syndrome Awareness Month: Tics

You're at the grocery store and you notice a lady at the meat counter jerking her head to the side repeatedly.  You're out to eat and hear the child at the table next to you grunting throughout much of the meal.  While at the park, you hear someone yell 'fire' multiple times, despite the fact that there is no fire present. How do you respond?  Do you stop and stare?  Do you go to the people in question and ask if they are alright?  Do you walk away, assuming bad parenting, drug use, or even just the desire for attention are to blame?

Believe it or not, these are all situations that I have encountered in public places - situations that I am lucky enough to understand rather than to have a reaction like those I mentioned above.  For those of us blessed (yes, I did say blessed) enough to have experience with Tourette Syndrome, it's easy to understand that those situations are all examples of tics.  Rather than bring attention to the tics or assuming the worst, we're able to sympathize with the ticcers, understanding that they are struggling with the need to perform these actions, no matter how badly they want to control them.

Tics can come in many forms, motor and vocal, simple and complex.  The possibilities are endless.  Below are a few examples of each type of tic.  As you may notice, some tics can be unclear as to whether they are classified as simple or complex.  Please remember that these are just examples, and that for each example listed, there are many more that are not listed.  It is also important to remember that some children experience tics that show up for a short period of time and then disappear with no explanation, never to experience another tic again (in which case, wouldn't be indicative of a tic disorder such as Tourette Syndrome)

Simple Motor Tics - eye blinking, neck jerking, shoulder shrugging, facial grimaces

Complex Motor Tics - groaning behaviors, facial gestures, biting oneself, smelling things, stomping of feet, jumping

Simple Vocal Tics - throat clearing or coughing, grunting, sniffing, snorting, barking

Complex Vocal Tics - coprolalia (the use of inappropriate words, which is rather rare despite media portrayal of this being common with TS), palilalia (rapid repetition of a word or phrase), echolalia (repetition of words)

Some quick facts about Tourette Syndrome

I know I am a few days behind in my posts for Tourette Syndrome Awareness Month, but it is for good reason.  I wanted to share quite a bit of information that I thought would be better in one big post, rather than broken into daily posts.

Tourette Syndrome is not the result of bad parenting.  In fact, it is a neurological disorder which can be hereditary.  Symptoms typically occur before the age of 18, and most commonly start appearing between the ages of 2 and 15.  The most common characterization of Tourette Syndrome is the presence of tics, which are involuntary movements and/or vocalizations that repeatedly occur.  There is usually the presence of multiple tics, both motor and vocal tics, though they do not necessarily happen at the same time.  These can happen multiple times a day every day, or even coming and going over a course of time.  In order for the Tourette diagnosis to be given, the presence of these tics have to have occurred for at least one year.

With Tourette Syndrome, tics tend to follow a wax and wane pattern, meaning that they may suddenly appear, stay for a short period of time (or a long period of time), and then disappear, usually to suddenly return again at a later time.  They can also change in frequency and severity.  New tics can appear to replace old tics.  Tics can also increase in number and severity under certain circumstances, such as periods of high stress or exhaustion.

While tics tend to be involuntary, it is possible to control the tics for a period of time.  For example, some students can hold the tics in during the day at school.  However, when they reach their comfort zone (such as when they arrive at home), they must release the held back tics.  This can often result in outbursts of tics, and can even result in changes in mood.  Often times, holding in tics can also result in inability to concentrate.

It is important to remember that Tourette Syndrome is usually accompanied by a number of co-morbid disorders.  We will get into those in a future post.

Early signs of Tourette Syndrome

I often get asked how early on that I started seeing signs of Tourette Syndrome in Monster Man.  I always knew that he was a little 'different', but didn't quite know what was making him different until he was older.  Somewhere around the end of first, we do know that he started having some problems that we associated with allergies.  For a long time, we didn't realize that they could be anything else other than allergies, which he'd struggled with since he was a toddler.  For that reason, we're not really sure when the TS symptoms started and how many of his symptoms were TS related rather than allergy related.

It's with good reason that we so were so easily able to mistake signs of TS as being allergies.  Tics of the eye are often among the first motor tics, and the most common one is eye blinking.  Tics of the head and fact are often very common early motor tics.  Early vocal tics often include throat clearing and sniffing.  Monster Man had the eye blinking, throat clearing, and sniffing long before he had any other tics... all very common allergy symptoms.

There are also many complex motor tics that can be common closer to the onset of Tourettes symptoms.  These can include touching, thrusting of the arms and legs, and jumping.

It's important to remember that no two cases of Tourette Syndrome are exactly the same.  What can be early symptoms in some people may not show up at all in others.  Two people may share one or two of the same tics, but have a much larger list of tics that they don't have in common.  It's also important to realize that these early signs are just the most common, and that some people experience different tics than those listed early on.

It's That Time Again

It's that time of the year again.  Today officially marks the start of Tourette Syndrome Awareness Month, which runs from May 15 to June 15.  In the days to come, I will once again be sharing facts about Tourette Syndrome.  Please feel free to share my posts to help spread awareness of what TS really is.

To start us off for the month, here is the first fact:  Tourette Syndrome is not a swearing disease, as media often portrays it to be. It is a neurological disorder characterized by motor and vocal tics.  Coprolalia (the swearing often associated with TS) occurs in only about 10% of those with Tourette Syndrome.

EEGs for both the boys

I had to take both Monster Man and Little Man to the neurologist last month. It was time for Monster Man to be seen again, and it was at that same time that I took Little Man in to get his diagnosis, as well as to be seen for migraines. In addition to the TS and migraines, I had another concern that I had needed to discuss with the neurologist. For some time now, Monster Man has had a problem where he would quit talking mid-sentence, spacing out and completely forgetting that he was even talking. I was told by several people in a TS group I am part of that it could be TS related, but that it sounded more like absence seizures (petit mal seizures). In recent months, it had been brought to my attention that Little Man was also having spells where he would 'space out' and seem like he wasn't quite there. Given the fact that there is a close family history of epilepsy, it was a bit concerning to us. I mentioned this to the neurologist while we were at their appointment, and he scheduled both boys for EEGs the following week. After a long night of keeping them up until midnight and then waking them up at 5am (they were only allowed 5 hours of sleep prior to the testing so that they would be sleep deprived), Georgia Boy and I took them to have the EEGs performed. In our paperwork, we were told that the results would be ready through our physician in 7 to 10 business days, so we expected a long wait before finding out the results. Instead, the neurologist called us that afternoon with the results. Sure enough, both of the boys have been having absence seizures. The boys are now both adjusting to taking seizure medications, a transition that has been a little easier for Monster Man (who is used to taking medication for the TS; Little Man does not require medication for his TS at this time) than for Little Man. I think Little Man is finally adjusting, though, and we're already seeing a huge improvement in the amount of seizures we were previously seeing.

Not one, but two

I know I haven't posted here very much recently.  There has been a lot going on that has kept me from posting, but I've also kind of avoided posting anything until I could give some information that I didn't want to post until I knew for sure.

I'm pretty sure that I've mentioned before that Tourette syndrome can be hereditary.  While there are cases where it seems to come out of nowhere, more often than not there is usually someone in the family (somewhere along the lines) that has had TS or at least tics.  It's also not uncommon to find out when one of your children has TS that a sibling has tics or TS.

That has ended up being the case in our home.  Our seven-year-old son, Little Man, was diagnosed with Tourette Syndrome this morning.  And so our journey begins of raising not one, but two children with TS.

It's been a while

I know that it has been a while since I've updated here.  The truth is, there hasn't been a whole lot to report.  When it comes to a child with TS, that's definitely a good thing!

Monster Man started taking Clonidine over the summer.  When he first started taking it, he had a few side effects that were a little bothersome.  We almost took him off of it, but decided to give it a few more days since the side effects, while a little worrisome, only happened a couple of times.  Sure enough, once his body adjusted to the medication, the side effects went away.

When we first put Monster Man on Clonidine, our biggest concern was the rage issues he was having.  The neurologist told us that the Clonidine wouldn't help with the rage itself, but that it could possibly be improved by helping him control his tics.  At the time, his rage had gotten so severe that he had gone from having a single rage episode, lasting about an hour, every few weeks - or even months - to having as many as 12 a week, lasting anywhere from 45 minutes to 2 hours. 

Interestingly, the rage improved drastically, but the tics seemed to explode!  In the six months that Monster Man has been on Clonidine, he's only had two rage episodes, and both were only about 30 minutes in length.  And if he accidentally forgets to take his medicine (for example, if he spent the night at a friend's house and failed to take it), we can tell the next day because his behavior is so different.  On the other hand, he went from ticcing only a few times each hour to ticcing almost non-stop!  He suddenly had to have his fingers to his mouth constantly.  If he wasn't chewing the skin around his fingernails (which I previously mentioned), he was twisting the tip of his tongue with the tips of his fingers.  He also added a tic similar to blowing a raspberry, but it sounds similar to a horse (my hubby calls it the horse tic), which he had to do multiple times in an hour... Sometimes it seemed he'd only move his fingers from his mouth to do the horse tic before returning his fingers to his mouth once more.

He has learned to control his tics somewhat in certain situations.  He doesn't seem to do the horse tic very often at church, and I've been told he rarely does it at school either, but he has to release it all when he gets home, sometimes blowing raspberries for two or three minutes straight.  The fingers to the mouth thing, though, seems to be pretty much a constant.  I've even seen him twisting his tongue on the ball field in between pitches while at bat!  It can be really interesting at meals, when I've seen him pick up tiny pieces of food (sometimes even single grains of rice), roll them into even tinier pieces, and then roll the food along the tip of his tongue with his fingers, rather than twisting the tip of his tongue.

About two weeks ago, the doctor increased his dosage of Clonidine in hopes that it will help control the tics as well as it has been controlling the rage.  So far, we've noticed a good improvement.  His fingers aren't going to his mouth as often as they were, though he does still do this fairly often, and the horse tic doesn't seem to be present so much either.  We're seeing a much happier Monster Man than we've seen in a very long time, though he still has his moments (but what twelve-year-old boy doesn't?).  It's so nice to see him happy again!

I don't see it...

There is one comment that seems to be heard by just about every single one of us that has a child with TS.  At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it".  While the words may be quite harmless, there are other times when the words can end up being more hurtful.  Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.

I think there are a number of factors that can come into play as to whether or not someone "sees it."  Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control).  Another factor can be whether or not the child is comfortable around the person that doesn't see it.  Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone.  There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.

Mothers, on the other hand, are often more tuned in to the things that affect our children.  We have a sense when something is wrong, when there is something more than just habitual behaviors going on.  We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them.  Just because you don't see it doesn't mean that we don't see it.  When we do come to that realization, when we accept that our children are different, we need the support of those around us.  We don't want to hear the doubts cast our way.  We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support.  Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.

Adjustment Period

Monster Man has been going through a bit of an adjustment period.  About three weeks ago, he started taking Clonidine to help control some of his tics.  The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage.  We were told that it would take over two weeks before we start seeing results.  So far, we're not sure if the results we're seeing are an improvement or not.  Some of his tics have seemed to decrease, but others seem to have increased.  He also seems a little more 'jumpy'.  His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.

This past Saturday, we left for a camping trip to the mountains.  Sometimes, he seemed much better than he previously would have.  In the past, he's been very nervous going over the mountain roads, afraid he'd fall off.  He didn't seem to have those fears this time.  However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic.  He had gotten upset because he was ticcing a little and noticed someone was watching him.  The stress from being stared at caused him to start ticcing 100 times worse.  I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL).  A few minutes later, he was happily drawing again.  Seeing him struggle like that was so hard on both me and my husband.

We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening.  We're also keeping our eye out for signs of improvement.  We're really hoping that this medication will help improve Monster Man's symptoms.  He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.

The Last Day of School

Today is day 9 of Tourette Syndrome Awareness Month.  It also happens to be the last day of school for Monster Man, his siblings, and their classmates.  What does this mean for kids with TS?  As with any other kid, it means an incredible amount of excitement.  However, excitement (just like stress) can lead to an overabundance of tics.

The truth is, tics tend to increase in both number and severity during periods of high stress or excitement.  It's almost as if the ticcer's body doesn't know how to handle the extra stimuli, and thus goes into overdrive.  In Monster Man's case, he's been doing this half shoulder-shrug/half head-shake thing, which he only does during high excitement or high stress periods, and he's been doing this multiple times a minute.  Sometimes, he doesn't even notice he's doing it.  Other times, he's annoyed because he feels like he can't stop doing it.

Sadly, the high levels of stress and excitement can also lead to increased problems with other issues, like irritability that can lead to a rage episode.  When just the right trigger comes along, he can become like a stick of dynamite, exploding when the lit fuse finally reaches the stick.  As if he's suddenly been triggered, he just explodes, losing control of his emotions.

He was put to the test just a couple of days ago at school.  His teachers have all recently told me that they've never seen his lose his temper or get anywhere close to a rage episode, but they apparently spoke too soon.  With all the excitement of the end-of-the-year activities, he's been building up all the extra emotion inside him.  During field day, a classmate poured water over him, and he immediately responded by putting the kid in a headlock.  Thankfully the episode didn't go past there, as it very easily could have.  The teachers could have seen much worse had he not been able to regain his self-control as fast as he did.

It concerns me greatly to know that he did start to lose his temper at school, that a trigger set him off outside his usual comfort zone at home.  This only proves to me even more that I am doing the right thing in taking him back to the neurologist next month to see about getting him on a medication that can help him better control some of the issues he has.

Let's Talk About Tics

Today is day 3 of Tourette Syndrome Awareness Month, and I thought I'd take the opportunity to educate those who might be confused about what tics are, and about how they differ among those who have Tourette Syndrome.

Tics are repetitive, involuntary body movements, and they can be physical or audible.  Some tics can be quite simple, such as eye-blinking or sniffing.  Some are more complex, such as when Monster Man looks upward at the outer sides of his face (opposite directions and up at the same time) while making a really wide smile.  Blinking, snapping, chewing, etc are all examples of motor tics.  Verbal tics can include such things as throat clearing, barking, and shouting.

Some verbal tics can include coprolalia, echolalia, and palilalia.  Coprolalia refers to the desire to curse or say derogatory words or phrases.  Echolalia refers to repeating what others say (kind of similar to the copycat games that kids like to play, mimicking each other, but instead is involuntary).  Palilalia is the repetition of  one's own words or group of words.  This can be similar to a stutter.  In Monster Man's case, he occasionally will repeat a few words in his sentences ("I want to go to to go to the ball fields tonight").  It happens so quickly that he often doesn't even realize that he's repeated himself, and it can go unnoticed on occasion by those around him (thankfully, since a stutter is often made fun of by kids his age).

Tics have a tendency to wax and wan.  They can come on for a very short period of time, then disappear for a while before returning.  Sometimes they come, stay a while, and then disappear completely.  Very rarely do tics come on and never go away.

Tics differ greatly between those with Tourette Syndrome.  You might fill a room full of people with TS, only to find that no two are having the same tics.  While two people might have matches in their lists of tics, they may not exhibit the same tics at the same time.  And for every match that is on their lists, they have many more that do not match up.  The lists of tics can be just as different as the individuals who have the tics.

Made an Appointment... and more

I know it's been a while since I've posted here.  The truth is, I didn't want to feel like I was complaining since the majority of the time lately we've been dealing with severe rage episodes.  The rage has got to be the worst thing that any of us, including Monster Man, has been dealing with in our journey through life with Tourette Syndrome.  I do want to take a few moments to catch you up on the positives, though, and to give you an update on how he's doing.

Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school.  I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset.  I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check.  I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe.  He did really well, and they didn't have a single problem with him during the trip.  His team came in third place, so he was very excited about how well they did.

Softball season is back in full-force.  This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall.  He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons.  Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.

As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges.  He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with.  We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present.  He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).

I finally broke down today and called the neurologist to make another appointment.  I've been putting it off since we'd decided we wanted to try to avoid medication if possible.  He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own.  His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis.  I'll be counting down the days!

Haircut Time

Monster Man has been trying to let his hair get a little longer.  He has a certain style in mind, though we're having to come to a compromise on it.  He wants it longer like many of the boys are wearing these days, with his bangs coming slightly over one eye.  I, on the other hand, do not like the way it looks having hair over the eyes and worry about how it would affect both his vision and his eye tics.  I've agreed he can wear it a little longer as long as the bangs are not in front of either of his eyes.

The biggest problem I am having is getting Monster Man to understand that it needs to be trimmed from time to time to make sure he doesn't end up with a mullet or some other crazy hairstyle.  He's afraid that even a trim won't let his hair grow out.  The need to trim his hair has become a bit of a battle, and battles with Monster Man are never easy.

Last night, I gave Angel Baby and Little Man some very much needed haircuts.  Theirs were not trims, but instead were major cuts.  I planned on trimming Monster Man's hair afterward.  When he sat down and I started trimming just a little off the bangs (about 1/4 inch, if even that much).  I knew I had to take it slow, cutting very small amounts at a time since his head shaking tic has been bad again and I didn't want to end up cutting it too short.

I barely got any of it done before I came to the realization that I'm not going to be able to be the one to trim his hair when his head shaking tic is so severe.  Between the need to keep my hands steady and work to keep his hair looking good (especially since I have no training when it comes to cutting hair) and the need to fight back tears watching him struggle so much, it makes cutting his hair almost impossible for me.

I think for now I'll take him to get it trimmed, and try again another time if his head shaking isn't a problem.

Comfort Zone

I was talking to my aunt over the weekend, explaining some of the obstacles Monster Man faces after she'd asked about Tourette Syndrome, when my mom reminded me that I needed to explain to her about being Monster Man's "comfort zone".  I realized then that I've talked a little about being his comfort zone, but I haven't really explained what I mean when I say that I am his comfort zone.

Those with Tourette Syndrome often try to suppress their tics, their rage, or their anxiety.  Rather than letting others see their struggles, they hold them in as long as they can.  After all, the public isn't always as accepting of their tendencies as they should be.  As the tics and emotions are held inside, they build up more and more, just waiting to be released.  Then, when the Touretter can't hold it in any longer or gets somewhere where he or she can release the tics or emotions without worrying about being judged, the bottled up tics and emotions come out ... and they come out much stronger and much more severe than they would've had they initially been released.

That safe place to release the tics and emotions - that place where the Touretter knows that he or she will not be judged by the tics, the rage, the anxiety, etc - is his or her "comfort zone".  The comfort zone isn't just a place, however.  It is often times a person or a group of people.  In Monster Man's case, his comfort zone isn't at home; it is anywhere that I am.  He knows that my love is unconditional, that I won't stop loving him when he lashes out at me or when he shakes his head so hard it makes him dizzy.  He knows that, when he finally calms down (sometimes hours after his rage starts), I will always be there for a hug.  He knows that, no matter how many times he tells me he hates me, I continue to love him and I know that he really does love me.

Sometimes, being the comfort zone is a hard job.  It isn't easy to hear him call me names, to hear the hateful tone in his voice, and to have him blame me for all the struggles he is facing.  It isn't easy to have him aim all that anger directly at me.  But at the end of the day, when all is said and done, I know that he really does love me, and that he's only aiming his aggression at me because I am doing a good job of loving him and letting him know that he is loved.  And I know that all those harsh words will eventually be followed by hugs, apologies, and a much happier, more loving Monster Man.

His Worst Day Yet

Yesterday was Monster Man's worst TS day so far.  We were at the softball fields all day, as we had three games to play between the kids.  By the time I took him to the house of a friend that was watching him for part of the afternoon, he'd had three rough episodes of rage, and he'd developed two new tics.  His painful tic was back in full-force, which I think added to the rage he was experiencing.  While on the field for his game, I noticed he'd started a new head-shaking tic.  He was shaking his head, very similar to shaking it no, very hard.  He did this multiple times throughout the day.  On the way to our friend's house, he told me that he'd started a tooth-grinding tic, as well.  He was grinding his teeth in a way that wasn't noisy, but it was with enough force that it was painful.

He did pretty well at our friend's house, though all three tics continued to be a problem until he went to bed.  After we picked the kids up, we went back to the ball fields to watch the adults play and to let the kids play on the playground.  He had one more episode of rage during that time, and then another when we got home and it was time for the kids to go to bed.

By the time that bedtime came around last night, we were all ready for him to get to bed.  He needed to rest his brain and the rest of us needed to get away from the rage.  I also needed to get a chance to get away from seeing him struggle so much.  It's so hard to see him going through all of this.

Thankfully, today has been better than yesterday.  He's still having the same tics, but he hasn't had any problems with rage today at all.

Wax and Wan

Just as is characteristic of the tics associated with Tourette Syndrome, Monster Man's painful tic has wanned for now.  Tics seem to go through a wax and wan cycle.  They come, they go.  Some reappear.  Some stay gone.  We are hoping that this is one that will not make a reappearance.

Monster Man has had a number of tics that have stayed gone for quite some time after they've disappeared.  Some of them have been gone for so long that we are hopeful that they are gone permanently.  These all tend to be the more complex ones, too, like the painful tic or the 'take three steps and kick myself in the back of the leg' tic.

In place of the painful tic, Monster Man seems to have developed a head shaking tic.  He doesn't shake it all the time.  Instead, it's a sudden big shake, similar to a female tossing her hair over her shoulders in beach scenes in movies.  It involves a good portion of his upper body, from about his chest up, twisting to the side as he shakes his head like this.  I have seen this one before, about three or four months ago, and it lasted about a week last time.  It will be interesting to see how long it will stick around this time.

Painful tics

Today is the fourth day of Monster Man's newest tic - one that is actually physically causing him pain, but he can't control it.  He has started this new weird eye squinting thing.  Each time he does it, his eyes try to look in different directions.  It's like he's trying to look to the upper right and the upper left at the same time.  The first day and a half of it, he covered his face.  We were unable to see what he was doing.  Later that evening and most of yesterday, he started uncovering his face and I could see it was just the eyes.  Late last night, the tic progressed to include the majority of his face, opening his mouth in the really wide smile that almost seems to wide to be possible at the same time that his eyes are looking in two different directions like that.

It's so hard to know how much it is hurting my little boy.  I want nothing more than to see my son happy and healthy, and this latest tic has got to be his worst so far.  In fact, until this tic came along, he has always said that he likes his tics - that the tics make him special.  With this latest tic, though, he has started saying that he thinks that God is punishing him, that there must be something that he has done wrong, but he doesn't know what it is.  It breaks my heart to hear him saying things like that, and I am spending a good portion of my time reassuring him that he is not being punished. 

I am hoping that this tic will do like most of the others and that it won't be long before he's lost this tic and moved on to another one (less painful please!).