Family Camp Photos

I just realized that I never did update and tell everyone how Camp Twitch and Shout's family camp went.  I apologize for not doing so sooner.

The month of September was crazy for us.  Georgia Boy had a business trip to England, which left me home with Angel Baby, Monster Man, and Little Man for two weeks.  Family camp happened to fall during the time that he was gone, so the kids and I went to camp without him.  My mom was supposed to go with us, but she was unable to take the time off of work.  It was a great experience for the kids and I to have this extra time alone, and it gave us a fun distraction from missing their Daddy.

The camp weekend was filled with activity!  Dodgeball, kayaking, archery, wall climbing... There were so many great activities that we all got to enjoy.

Meal times were great, and they were often followed by dancing while the kids got to dress up in different costumes.

The kids were shocked that I was more than willing to dig for worms and even put them on the hooks when we went fishing.

What would a camp experience be without some s'mores?!

The group was smaller than usual, but we still had a blast.  We're already looking forward to next year's family camp!

Update on Family Camp

As you might have noticed, the widget on the side of the page ------->  has been changed to one specifically raising money for Camp Twitch and Shout.  This change has been made because we now have enough money for our family to attend Camp Twitch and Shout's family camp weekend.

We'd had a few unexpected expenses that took away the money we had saved for camp.  Georgia Boy has to travel for work soon, and he had some travel expenses that we're still waiting to be reimbursed for.  To top it off, he ended up needed both new tires on his car and a repair for a leak that made the car unsafe to drive.  It's amazing how fast something like that can hit and take away the money we'd saved up.

I originally started my fundraising specifically on GoFundMe.com.  I encountered a few problems with the links not wanting to post to that site, so I also added a wish on WishUponAHero.com to help bring in the money we needed.  We also had a garage sale to help earn what money we could to help pay for camp.  As of today, we officially have enough money to pay for family camp in full!

We do not like having to ask for help with things like this, so we have made the promise to ourselves that we will pay it forward by donating to Camp Twitch and Shout in hopes that it will help pay for another child to attend camp next summer.  To help with this, we've started a new fundraising page on GoFundMe that will allow us to take in extra donations specifically to help the camp.  When we're ready to send the funds to the camp, we can add our own to the total.

We are now looking forward both to attending family camp and to helping raise funds to help keep Camp Twitch and Shout affordable for families like ours.

A New Widget

I have added a new widget to the side of my blog.  It will be here for about the next month, when it will change to something a little different.   We're trying to save up for this year's family camp at Camp Twitch and Shout.  I don't usually like asking for help, but we've run across a slight (temporary) situation that is kind of freezing the money that we'd planned to use for family camp.  My husband is going to have to go out of town soon for work, and he's having to pay for his expenses and then be reimbursed.  This means that the money we'd planned for family camp is now going to have to be used to pay his expenses.  It was a hard decision for me, but I decided to give Gofundme.com a try.

The current widget is being used as a way to accept donations to help us with the cost of family camp.  Any help we can get with the cost of camp is very much appreciated.  Monster Man's birthday is next month, and I would love to be able to tell him for his birthday that family camp is paid for (whether by partial donations or not).  Even a small donation of around $5 will help make camp more affordable for this session.

I plan to pay the favor forward, giving money directly to the camp to help keep the costs down for next summer's campers, which brings me to the widget that I plan to replace the current widget with.  Once family camp is over, I am planning to replace the widget with another Gofundme.com widget, this time being one that will go to Camp Twitch and Shout to help other campers.

Please check out the new widget (and the one that will replace it) and, if you feel led to, please make a donation to help the camp.  Camp Twitch and Shout means so much to our family, and I am looking forward to doing my best to help the camp soon!

Dermatophagia and Trichophagia

 One of the things that Monster Man has been dealing with for a very long time (since well before his diagnosis) is biting his own fingers.  It started out with nail-biting and progressed into chewing on the skin around his nails. I cannot remember the last time that I actually had to clip Monster Man's fingernails because he's bit them down so short for so long.  

At first, we didn't realize that this was in any way, shape, or form related to Tourette Syndrome.  A few months after his diagnosis, I started noticing that other parents were talking about how they fight the chewing by using things such as chewelry (jewelry that can be chewed on).  With all the posts I was seeing online in the Tourettes groups that I am on, I came to realize that chewing of skin (whether it be on the fingers, the toes, or wherever), as well as the chewing of hair, is very common in the TS world.

I finally discovered today that there are actually names for the chewing of skin and hair.  Those that chew on their skin most likely suffer from dermatophagia, while those that chew on their hair most likely suffer from trichophagia.  Both conditions are not part of Tourette Syndrome itself, but are actually part of a TS comorbid... Obsessive Compulsive Disorder.  

In my reading on dermatophagia, I came to realize that it is something I've always struggled with myself.  I have always chewed the inside of my mouth, often leaving sores on the inside of my cheek and on the inside of my lip.  As a kid, I tried to control it either by chewing on pencils or chewing gum.  I ended up with TMJ in middle school, and I had to cut back on the gum chewing.  I've been chewing the inside of my mouth off and on ever since.

I still haven't found something to help Monster Man compensate for the need to chew his fingers.  We've tried multiple times, unsuccessfully, to at least limit how much he chews on his fingers. He often chews on them until they bleed or scab, and we're concerned about the possibility of infection if he doesn't start controlling how much he chews.  We're hoping something will come to us soon, but at least we know now what we're really dealing with. 

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.

No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!

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.

Comorbid Conditions & Tourette Syndrome

Today is day 8 of Tourette Syndrome Awareness Month, which (as I've stated in a previous post) runs from May 15 to June 15.  I want to take the opportunity today to share a little about comorbid conditions.  I've used the term many times in the past, yet I've still received a lot of question about the term "comorbid".  It seems that what throws most people off is the word "morbid", which is most commonly thought of as "gruesome" or "unwholesomely gloomy".  Dictionary.com gives four definitions for the word "morbid", including the two more common definitions I just mentioned.  However, it can also mean "affected by, caused by, causting, or characteristic of disease" or "pertaining to diseased parts".  In the case of co-morbid conditions, it would be more the "affected by,..." definition.

Comorbid condition of Tourette Syndrome can include Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), bipolar, depression, anxiety, and rage. They can also include learning disorders, such as dyslexia and dysgraphia.  In many cases, these comorbid conditions are actually harder on the individual with TS than the actual tics are.

It is important to remember that these can appear together but do not always.  Some people may have one or two comorbids with their TS, some may have none, some may have many.  Like the difference in tics, it seems that you can have a room full of ticcers and not see a completely matching list of comorbids between two individuals.  It is also important to realize that just because a child exhibits one of the comorbids, it doesn't mean that the child has Tourette Syndrome.  A child with ADHD could just have ADHD.  A child with OCD could just have OCD.  These are all conditions that can occur on their own or along with other conditions.

Tourettes in the Classroom

I missed my post for day 7 of Tourette Syndrome Awareness Month, so I decided I'd do a quick one this morning to make up for it.  This past school year has been filled with struggles for Monster Man at school.  Through it all, though, he's managed to maintain his grades to mostly A's and B's (one very high C).  It hasn't been easy, and he's faced many challenges along the way, but that's how it tends to be for students with Tourette Syndrome.

Tourette Syndrome can be hard enough to live with at home, let alone to be in a classroom setting, with students that can see (and possibly make fun of) the tics, teachers who think the student is being disruptive, and the added stress of trying to keep up with the lessons while controlling the urge to tic.  So many co-morbid issues add to these problems, as well, such as ADHD and disgraphia.  The classroom setting can be very stressful indeed for students with Tourette Syndrome.

The Tourette Syndrome Association offers many resources to help educators understand and prepare for students with Tourette Syndrome.  As parents, it can help make our children's classroom lives easier if we provide their teachers with some of these materials.  It would also be helpful for schools to keep some of these materials (many of which can be found for free or at a very low cost) on hand to prepare not only for current students with TS, but for any new students that might come along or anyone that might get diagnosed.  Being prepared can make the classroom life so much easier for everyone involved.

Driving with Tourettes

Today is day 6 of Tourette Syndrome Awareness Month.  Since the weekend was incredibly busy for me, I figured I'd stick with a smaller post for today.  I was thinking about a question that someone recently asked me, and I thought I'd answer her question here in case anyone else has asked that same question.  "Can someone with Tourette Syndrome drive?"

In most cases, the answer to that question is yes.  Tourette Syndrome in itself is not a cause for someone being unable to drive.  There really isn't much reason as to why someone with TS couldn't drive, unless there are other medical issues that are co-existing along with the TS, or unless the tics make it too hard to concentrate on the road or drive safely.  In fact, I've talked to several people that have said the concentration it takes to drive is a good distraction from the tics, giving the ticcer a break from their usual tics.  One person I talked to said that they wouldn't tic while driving, but would have to release their tics (in this person's case, severe head shaking) at every red light and stop sign.  As soon as he was able to drive again, the tics would be controlled until the next chance to stop.

Not only can people with Tourette Syndrome drive a car, but they can also race a car.  I've mentioned before about the racing record that was accomplished by Trey Shannon for TS Awareness.  I may also have mentioned that NASCAR drivers Kenny Wallace and Steve Wallace both have Tourette Syndrome.  They offer hope to ticcers like Monster Man who have dreams of one day racing a car themselves.

Camp Twin Lakes

I thought I'd post something a little different for day 5 of Tourette Syndrome Awareness Month.  I've mentioned in previous posts about Camp Twitch and Shout, the wonderful camp that Monster Man attended last summer, and that we attended as a family in the fall.  Camp Twitch and Shout is a week-long summer camp for children ages 7 to 17 that have Tourette Syndrome.  For that week, the kids are free to tic to their heart's desire.  There is no one staring at them while they twitch, no one feeling disrupted by their need to shout.  It's a special place where they can feel 100% 'normal'.  In the fall, families come together for a weekend filled with camp activities, a little bit of education for the parents, and (most importantly to us) the chance to connect with other families that know what we experience daily.

Camp Twitch and Shout is one of several wonderful camps offered through Camp Twin Lakes.  Camp Twin Lakes holds several different camps for children living with disabilities, life threatening diseases, or other challenges.  There are camps for children with Tourette Syndrome, diabetes, weight management issues, Autism spectrum disorders, developmental or intellectual disabilities, burn injuries, asthma, sickle cell disease, spina bifida, cancer, celiac disease, muscular dystrophy, juvenile arthritis, hearing impairment, brain injuries, bleeding disorders, epilepsy, amputations, and so many other situations, including some camps for children living with family members going through some of these situations.  All of these camps offer their campers a chance to connect, a chance to feel like they are truly accepted, a chance to feel like they belong.

Camp Twin Lakes is one of five organizations in the running today for a chance to win a Toyota vehicle.  Each day for 100 days, Toyota is giving away a vehicle to an organization that is trying to make a difference.  Camp Twin Lakes could really use the Toyota Tundra.  Among the many ways that the camp could benefit from having this vehicle is their newest program, Camp-To-Go, which allows Camp Twin Lakes to have camp activities in children's hospitals around Georgia.  It's such a great opportunity for children who can't make it to a camp location due to their medical needs.

Please take a few moments today to check out the Toyota 100 Cars for Good page on Facebook.  While you're there, please put in your vote to help Camp Twin Lakes be today's winner.  Voting begins at 10am Eastern time, and runs until 11:59pm.

Not a spiritual thing

I have seen and heard many comments - on websites, in emails, and out in public - about Tourette Syndrome being a spiritual thing.  Some of those that are not informed think that people with Tourette Syndrome are vulnerable in their spiritual connections with God.  They either aren't strong enough to stand up against the demonic forces that are causing them to tic, have a spiritual battle going on in them, are possessed by the devil, or even worship Satan.  Yes, those are all comments that I have seen or heard.  So, for day 4 of Tourette Syndrome Awareness Month, I want to take the time to address these comments.

In researching information about Tourette Syndrome online, I ran across a forum where people were discussing those who struggle daily with TS.  In this forum, I saw some of the comments I mentioned above.  I also saw comments that stated that people with Tourette Syndrome should not be allowed to date, let alone marry and procreate.  In fact, I saw one comment that referred to children of parents with TS as being the spawn of Satan.  How sad to think that this whole group of people is so uninformed!

I saw one person, in an email, back up his comment of Tourettes being a 'spiritual thing' by stating that people with Tourette Syndrome use obscene words or gestures.  As I've mentioned previously, coprolalia (the use of such obscenities) only occurs in somewhere around 10% of all cases of Tourette Syndrome.

The truth is, Tourette Syndrome is not a spiritual thing at all.  Instead, it is a neurological disorder.  It is not caused by demons, but instead by brain impulses.  It can, in many cases, be hereditary, though this isn't always the case.  Some theories on cause (since no cause is known) show that brain abnormalities, caused by chemicals in the brain such as dopamine and serotonin.

If you hear or see someone make a comment about the spiritual well-being of a person living with Tourette Syndrome, please take the time to explain to them the truth.  Tourette Syndrome is NOT a spiritual thing, and it can be very hurtful to those who suffer from it to hear it even suggested.

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.

Statistics that Raise Questions

In looking up some information this morning to share for Tourette Syndrome Awareness Month, I ran across some statistics on a Neuroscience For Kids page.  The site states that between 100,000 and 200,000 Americans have Tourette Syndrome, a number that I was well aware of (in actuality, the number is estimated to be closer to 200,000).  It then went on to say that "About 1 million Americans may have very mild symptoms of TS."  In 2011, the population of the United States reached over 311 million.  When you look at 1 million, it seems like a small portion of the US, seeing how large the population of the US is.  However, when you think of it in the terms of 1 out of about every 311 people, it makes you really stop to think.

Tourette Syndrome is much more common than most people realize.  On the average day, we can easily encounter 300+ people.  Work, school, running errands... Everywhere we go, we are surrounded by others, most of which we don't even know.  When you think about all the people that enter our lives, even if only for a split second in passing, you realize that there is a possibility that at least 1 of those individuals that crosses your path has Tourette Syndrome or symptoms of Tourette Syndrome.

If the numbers are that high, why is it that there is very little awareness about what Tourette Syndrome really is?  There is so much awareness out there for other medical conditions - Autism, Down Syndrome, Cerebral Palsy, Epilepsy, etc - that we don't even really stop to think anything is out of the ordinary anymore when we come face-to-face with someone affected by these conditions.  So why is it that when people see or hear someone ticcing in public, they stop and stare?  Why isn't there more awareness that there are medical reasons for these behaviors, that kids aren't just being unruly?

Tourette Syndrome isn't completely ignored by the media.  Sure, there are portrayals of people living with TS on movies and TV shows. Sadly, though, the majority of these portrayals only show people who have coprolalia (the use of obscenities).  The truth is that only 10%-15% (statistics vary depending on source) of people with Tourette Syndrome exhibit signs on coprolalia.  The media, for the most part, fails to portray what life with Tourettes is really like.  Until more accurate accounts are shown, TS awareness is going to be skewed.

A Little Challenge

Today marks the beginning of Tourette Syndrome Awareness Month, which runs from May 15 to June 15 each year.  To start the month off, I'd like to issue a little challenge to those of you who do not have Tourette Syndrome.  This is a chance to for you to get a little bit of a better understanding of what life is like for those, like Monster Man, who live with the constant tics that play such a big part in life with Tourette Syndrome.

Think of the things that we do involuntarily - breathing, blinking... even yawning. Now, I want you to concentrate really hard on holding your breath and keeping your eyes open.  Do not blink.  Do not take a breath.  Do not yawn.  No matter what, until I tell you to do otherwise, I want you to try hard to control these movements.

It's hard to do, isn't it?  Now imagine that you have people fussing at you.  "Stop blinking!"  "Why can't you just control yourself?"  "I said stop that this instant!"  "If I see you blink one more time..."  Can you imagine what it is like to have those around you fussing at you, even punishing you, for doing the things that you must do?

This is what life is like for those with Tourette Syndrome.  Their tics come just as involuntarily as breathing, blinking, and yawning come for the rest of us.  They struggle to control the need to clear their throat, shake their head, bark, etc.  Sometimes, those that don't understand will tell them to stop, punish them for being 'disruptive', and ridicule them for their 'lack of control'.

Okay, now I want you to quit holding your breath.  You can blink, too, if you need to.  You're probably breathing heavier than usual now, trying to take in extra air.  You may be blinking excessively, too, making up for the lack of blinking you did while you were controlling your movements.  For those that manage to control their tics - at school, at work, in public - the release is usually similar.  Once they can finally let go and tic, all those extra bottled up tics usually want to come out with a vengeance.

Please keep this in mind next time you see or hear someone doing something you might view as strange or unruly.  They may not just be acting up.  They might not just be trying to get attention.  They might, in all actuality, be struggling to control these behaviors that come to them as involuntarily as breathing and blinking.

I thought I'd shared this already

I thought that I'd shared this already, but just found this shown in my saved drafts.  If this is a repeat, I apologize for the double post!


I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.

                Monster Man was always so different from our other two kids, as well as from all my friends’ kids.  When he was five weeks old, I woke up to find him blue.  He’d developed what turned out to be the first of a series of respiratory infections.  By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.  

                Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do.  He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between.  He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys.  The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car.  Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme.   We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.

                For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening.  That was when his personality really started to blossom.  The boy has been full of character from that moment on!  He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination.  From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus.  He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents.  For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to.  When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him. 

                In the months preceding Monster Man’s diagnosis, I joined the National Tourette Syndrome Association Facebook page.  It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art.  Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before.  Just about all use their art as a form of therapy.  I guess this would be where Monster Man’s overactive imagination comes in handy, especially when he’s drawing…

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!

Gotta wonder

Knowing that Tourette Syndrome can be hereditary, it's hard to look at Angel Baby and Little Man without wondering if they, too, might have Tourette Syndrome like Monster Man does.  What makes us wonder even more is the fact that we know that both Angel Baby and Little Man have issues that can be comorbid with Tourettes.

Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS.  While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics.  She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song.  She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior.  Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.

Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister.  We have, however, had to accept that he has OCD.  We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors.  Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves.  A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately.  He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well.  Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!).  The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.

OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome.  It's so hard not to wonder if we're seeing signs of things to come with our other two children.

Check-up Time

It was time for Monster Man's yearly check-up today.  In a way, he was looking forward to it because that meant he could get his physical for Camp Twitch and Shout completed, making him one step closer to the camp he loves so dearly.  All weekend, we talked about his check-up and needing to get the forms filled out for camp.  I wanted to make sure that he knew well in advance that we were going to the doctor because I know how he can get when it comes to things like doctor's visits and (dare I even say it?!) shots.  I didn't want him to feel like I'd blindsided him, taking him with no warning.  I figured if we talked about it ahead of time, he wouldn't be as anxious about it when it was actually time for the appointment.

Like even the best laid plans, my plans didn't quite work out, either.  I'd made the appointment for the middle of day, at a time when I knew that both Angel Baby and Little Man would still be in school.  With them in school, I'd be able to focus all of my attention of Monster Man.  Little Man, however, started getting sick over the weekend, and he ended up at the doctor's office right alongside his brother.  Little Man, it turned out, had bronchitis, so I was glad I decided to take him to the doctor, but it did mean I wasn't able to focus as much attention on calming Monster Man's nerves as I'd liked to.

As it turned out, Monster Man needed all the help he could get.  When we went into the first room, where he had his vision and blood pressure checked, he started getting worked up about having to have his iron level checked.  Once he found out he had to have his finger pricked, he started to melt down.  We were able to calm him down long enough to get his finger pricked and the iron tested, but that was about it.  By the time that we got into the room, he was in tears because he realized he was going to have to have shots.  I'm actually surprised that the family in the room next to us couldn't hear him raising his voice to announce that "You can give me my shots over my dead body.  You'll have to kill me first," and asking "Why can't they put me to sleep to give me my shots?"  I resorted to giving him one of his anti-histamine tablets, which we use to calm him down when his anxiety or his rage are acting up.  His pediatrician had not heard how upset he can get before, and she could hear him through the door crying that I couldn't make him take his pill and that I wasn't his boss.  Oh what fun we were already having at that point, and the doctor hadn't even walked into the room yet!

For the most part, the appointment itself went well.  Despite his anxiety level, he was able to make it through the appointment and through Little Man's appointment without losing it, right up until the moment when it was clear he couldn't hold off on getting his shots any longer.  At the point when the nurse entered the room, he started crying again, and it ended up taking another nurse holding one arm still while I held the other for the one nurse to be able to give him both of his shots.  It was only two shots, unlike the six that he just knew we were going to "kill" him by giving him.  They were over in less time than it took to give him his pill, not counting the time it took to get him under control long enough to give the shots.  It is heartbreaking to watch him fight so hard, especially since he gets so strong and hard to control!

When all was said and done, though, he looked up at the nurses and me and said "That wasn't so bad.  That was stupid."  He let me know multiple times over the next half hour that he felt really, really stupid for fighting so hard and getting so worked up.

He says that he won't be so worked up next time, but I'm not holding my breath with that one.  I've heard that from him before.  I think the anxiety he gets just builds up so much for him, and it makes the whole idea of shots seem ten times worse than they really are.

Attachments

I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future. 

         

As I took clothes out of the washing machine tonight, I discovered two heads to Lego men had fallen out of a pocket and were stuck in the rubber liner of our washing machine.  It’s such an unusual find, but it’s also one that brings back memories.  The Lego heads, which I’m sure belonged to my youngest son, Little Man, have yet to be missed by my children.  That wouldn’t have been the case if they’d belonged to Monster Man when he was little.

                Most kids carry around a lovey of some sort for at least a short period of time in their lives.  When I think of loveys, I usually think of blankies, baby dolls, or teddy bears.  Monster Man, however, formed an attachment with an object that many people thought was crazy.  If you’ve ever seen Toy Story, you know that Buzz Lightyear loses his arm in one scene.  When Monster Man asked for a Toy Story Play-doh kit when he was little, I thought nothing of it.  When he ripped off the arm of the included Buzz Lightyear doll, I must admit I was a little concerned, but I did find it amusing… until he grew attached to Buzz Lightyear’s arm.

                The arm couldn’t have been more than an inch and a half in length, and was very narrow.  It was something that could easily be misplaced, and it often did when the kids would play in their playroom, emptying their toy box onto the floor and burying Buzz Lightyear’s arm in the process.  When toys were put up afterward, the arm would often get tossed into the toy box along with the other toys.  It wouldn’t present a real problem until Monster Man decided he needed the arm, usually at bedtime, and we’d begin a frantic search to find the missing arm.  There were even times that he’d wake up in the middle of the night to find Buzz Lightyear’s arm was no longer under his pillow, and we’d have to search in, under, and around his bed until the arm was found before Monster Man would drift off to sleep again.

                I’ve heard other people talk about having a back-up doll/teddy/blanket in case their child’s beloved lovey was to disappear.  I couldn’t see any way of having a back-up Buzz Lightyear arm, short of buying a whole other Toy Story Play-doh kit and breaking the arm off that one.  That’s exactly what we ended up doing about six months after the original kit was bought.  Buzz Lightyear’s arm ended up in the mouth of one of our puppies, and the arm lost that particular battle.  By that time, the Toy Story Play-doh kit was hard to find, too, and we ended up in an extensive search for a replacement before finally finding one and letting Monster Man do the honors of breaking Buzz Lightyear’s arm free.  Thankfully, he decided a month or so after that to let the Buzz Lightyear arm go, and he moved on to bigger and better things.

                During the time that Monster Man was attached to Buzz Lightyear’s arm, I often heard people refer to his attachment as an “obsession”.  At the time, I brushed it off and just counted it as being compared to any other lovey a child has, only an odd choice for a lovey.  I didn’t give the word “obsession” much thought until after Monster Man’s diagnosis of Tourette Syndrome.  In reading about Tourette Syndrome, I discovered that obsession was usually used in terms of OCD, but that there are some reported cases of obsession with objects, subjects, etc.  Perhaps, in the long run, we’ll discover that there really was more to this unusual lovey than we realized way back then.

I came to an upsetting decision

I had to come to a decision over the weekend that has been kind of upsetting for me.  I have tried, up until now, to keep Monster Man off any medications for his Tourettes.  I know so many people have benefited from them, but the list of side effects and the whole process of finding which one will work best for my child just scares me.  I've heard horror stories about what the wrong medications can do (making symptoms worse instead of better, making kids seem like zombies, extreme weight gain...) and I didn't want to see Monster Man possibly go through those experiences.  I had debated at one time, trying to get him into a study before I'd heard these horror stories, and I felt like we'd dodged a bullet when the study didn't work out.  It was so upsetting for me to realize that I cannot help my son without the help of these medications.  I felt like I had failed my child, and it broke my heart to know that I couldn't help make him better on my own.

Friday, Monster Man had the worst rage episode he'd ever had.  This time, he got violent with it.  He'd never done more than an attempt to hit once or twice in his rage episodes previously, but this time he actually pinned down his little brother, grabbing his shoulders and shaking him until I pulled him off of Little Man.  When Little Man ran to my room to hide, and Angel Baby stepped between the two boys in an attempt to protect the youngest, Monster Man knocked her down and starting squeezing her as hard as he could with his hands.  I had to pull him off of her and have Angel Baby lock herself and Little Man in my room until I was able to get Monster Man calmed down.  For nearly 45 minutes, I watched as my son struggled to get himself under control, an evil look crossing over his face.  For nearly 45 minutes, I listened as my son yelled how much he hated us and how he felt like we hated him, too.  When it was all over, Monster Man cried along with me, scared of his own actions.  He wasn't even aware of everything that had transpired over the previous 45 minutes, and was terrified to learn that he'd tried to hurt his brother and sister.  "What if I'd hurt them really bad?" he cried.

Listening to my son sob as he came to the realization that he'd said and done such horrible things, as he repeated over and over how much he truly loves his family, was enough for me to finally give in and make that decision to finally get him on the medication he needs to hopefully put him in more control of his emotions, where he can finally fend off these horrible rage episodes.

So now I've begun this new journey... one filled with researching for the best doctors, the best medicines, the best therapies... one that I hope will finally bring my son some peace.

Rage, Negative Thoughts, and a Great Idea

We've been dealing with a lot of rage lately, an issue that faces so many TS families. I've mentioned before that Monster Man's anger goes far beyond just 'having a temper' or even pre-teen hormonal attitude. Those who have experienced the rage that often goes along with Tourette Syndrome, rather it be Monster Man's rage or their own family member or friend with TS, know exactly what I am talking about. Without having lived it, it is hard to grasp just how bad a rage episode can really be.

 Another issue that seems to go hand-in-hand sometimes is negative thoughts. Usually, these negative thoughts intrude in our lives when we least expect them. Our happy-go-lucky loved ones can suddenly become depressed, thinking (and sometimes vocalizing) negative thoughts. For Monster Man, we usually hear things like "I'm stupid", "I'm a horrible person", "You don't love me", and "I make everyone miserable". It's heartbreaking to hear him say these things, and even worse when I see that now-familiar haze wash over his normally shiny eyes. Now matter how much I reassure him that we love him, that he's smart and wonderful, and that we love having him around, I can't quite seem to break him out of the invisible chains that seem to be holding him back.

Another TS mom posted on her blog, Howdy Fence Neighbor, about a suggestion she got from another mom that can help remind our children of the positive things during periods of negative intrusive thoughts. Her idea is a 'Positive Box'. Whenever something positive happens, you write it down on a strip of paper and put it in the Positive Box. Whenever the negative thoughts start filling their heads, you pull out the box and read through the strips with them, helping to remind them of the positives that have happened. By getting their minds off of the negatives and focusing on the positives, you can work to break through those invisible chains. We'll be making our own Positive Box this week so we can start filling it right away.

Allowing Imagination to Become His Therapy

I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.

                Monster Man’s imagination has always stood out to those who spend time with him.  From the time that he could talk, it was obvious to us that he was one-of-a-kind.  At home, he was always living in a world of make believe.  He wore costumes as often as he could get away with it, he repeated movie lines and acted out scenes from all his favorite movies, and came up with stories that constantly kept us entertained.  When he started preschool, his teachers often commented on his incredible stories and drawings, pointing out how advanced his imagination was compared to his peers.  His elaborate imagination has followed him through all the years, remaining with him even as he started middle school earlier this year.

                Monster Man's imagination has been a big part of all of his favorite activities.  He has always loved to read, getting wrapped up in books for hours on end.  He loves to become a part of the world that lives inside the pages of the books, putting himself into the scenes and interacting with the characters in his mind.  Sometimes, he enjoys acting out the scenes and pretending he is his favorite characters, getting his brother and sister to act out the stories with him.  Sometimes, he likes to write out his own new ending to the stories, building on where the stories left off.  Most of all, though, he loves to draw out the scenes the way that he sees them in his head.

                Drawing has become a form of therapy for Monster Man.  It allows him to live in his own fantasy land, making an escape from the pressures he faces on a daily basis.  Whenever he is feeling overwhelmed, when his tics are at their worst, or when he’s having a bad day, he will sit at the table with some paper and his tools of choice – pens or pencils, crayons or markers, even paints or oil pastels – and sets to work drawing and coloring his cares away.

Monster Man is Santa Claus

I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.

                Monster Man was always so different from our other two kids, as well as from all my friends’ kids.  When he was five weeks old, I woke up to find him blue.  He’d developed what turned out to be the first of a series of respiratory infections.  By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.  

                Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do.  He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between.  He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys.  The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car.  Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme.   We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.

                For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening.  That was when his personality really started to blossom.  The boy has been full of character from that moment on!  He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination.  From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus.  He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents.  For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to.  When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him. 

                In the months preceding Monster Man's diagnosis, I joined the National Tourette Syndrome Association Facebook page.  It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art.  Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before.  Just about all use their art as a form of therapy.  I guess this would be where Monster Man's overactive imagination comes in handy, especially when he’s drawing…

How it all started

I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  Since some of you missed how this all started and wanted to know more about how we found out Monster Man had Tourette Syndrome, I thought it would be nice to share the article with you.  I will share more of the articles in the near future.

“Monster Man, stop clearing your throat.”  We must’ve said that exact sentence 1,000 times in the one school year that I’d taken our son out of school to homeschool him.  He’d been blinking excessively in recent months, too.  His allergies were probably just acting up.  Time to break out the Claritin, I kept thinking.  The Claritin seemed to ease some of the symptoms, especially once the sniffling started up, but still Monster Man continued to clear his throat.  I can’t begin to count the number of times that I checked his throat to see if he was getting sick on me.  It took about 8 months of treating the symptoms with Claritin and telling our son to stop clearing his throat before he finally admitted to me that he couldn’t control it.  No matter how much he tried to stop it, it only got worse.

When it was time for Monster Man’s check-up at the pediatrician, I mentioned to her the symptoms that he’d been having.  Since my husband has epilepsy, I had been told years earlier to report to the doctors any unusual behavior that I’d noticed.  Certainly the inability to stop clearing his throat would be considered unusual.

Our daughter had been sent to the hospital for tests a couple of years earlier, ruling out epilepsy at the same time that she had a sleep study done for possible sleep apnea.  I figured Monster Man would be sent for similar tests.  Certainly it wasn’t anything we should really worry about, just preliminary tests, right?  I wasn’t at all prepared for what the doctor told me at that check-up.

“Those are tics,” she’d told me after I had confirmed with her that they got worse when he was told to stop.  She then continued on to tell me that tics didn’t always mean Tourette Syndrome, but that she wanted my son to see the neurologist to find out. 

Wait a minute.  Tourette Syndrome?  I was blown away by the suggestion alone.  All I knew about TS was the little bit I’d seen depicted on television shows and movies.  When I got home from his check-up that January morning, I immediately got online and began researching information.  The TSA website was helpful, opening my eyes to how different Tourette Syndrome is from what is so often shown on television.  It also helped me to realize that Monster Man had been showing many of the symptoms for far longer than I had even realized.  It only took a few short days for me to decide in my mind that this was exactly what we were dealing with.

Monster Man wasn’t able to get into the neurologist until that October, over nine months after receiving the referral from his pediatrician.  By the time that he was able to see the neurologist, he’d developed over 20 new tics as well as having developed severe problems with anxiety.  Thankfully, we’d had all those months to prepare ourselves and Monster Man for the official diagnosis. 

While I had been able to prepare our family for the diagnosis while waiting for our appointment, I had also discovered that there were two things that really disappointed me.  First, there was no active Georgia chapter of the TSA, which meant that it would be harder for our family to find other families we could relate to.  We wanted Monster Man to be able to make friends experiencing the same thing he was, friends who would help him feel like he wasn’t alone, friends who would understand all the changes he was going through.  Second, the vast majority of the information that I was able to find was on medical websites or advocacy websites.  There was very little written in terms that the average person could fully understand, and there was even less that was written from the point-of-view of someone living through the diagnosis, the changes, and the daily struggles.  Both of those things are being remedied.  Georgia is finally getting a chapter of the Tourette Syndrome Association, and I have started a blog on Tourette Syndrome.

For our family, the new Georgia chapter of the Tourette Syndrome will give us a chance to connect with other families that have experienced what we are experiencing.  It will give us a place to turn to for advice and support.  Most importantly, it will give us a place to find new friends.

As for my blog, it has been designed to serve myself as well as others.  When I started What Tourettes Has Taught Me, I had intended it as a place to keep my friends and family informed of the changes going on in Monster Man’s life.  I soon realized that it was a great source of information for those who are newly diagnosed, those who are awaiting diagnosis, and those that just want to learn more about Tourette Syndrome.  It didn’t take long for me to realize that writing my blog was also therapeutic, giving me a chance to get all of my frustrations and my celebrations out of my head.  It shouldn’t have come as a surprise to me, since I’ve always been better at expressing myself through writing instead of through talking.  It’s amazing how fast typing all my thoughts out can remove the weight off my shoulders!

Writing my blog has also helped us to discover just how far back Monster Man started showing signs that he was different from other kids, and how young he was when he started showing symptoms that went unrecognized – symptoms that were easy to pass off as being something else.  How easy it was to answer the question of “Why does he do that?” with “because he is Monster Man”  Kind of like the two years he spent believing he was Santa Claus…

My apologies

I know that I have kind of let this blog slip over the past few months, and I apologize for that.  The truth is, I've kind of been afraid to write anything about how Monster Man has been doing.  Just when I start to write that things are going really well for him, he has a turn-around, which then gets flipped back to the good side whenever I start to write about that.  The roller-coaster we call life has had so many ups and downs lately, and I'm afraid if I get high enough on one hill to share the view, we'll go spiraling downhill faster than I can ever imagine.

School has been going pretty well for Monster Man.  His grades had slipped a little at the beginning of the school year, but they've risen at a rather fast rate, and he's shown a significant amount of improvement.  He had mostly B's and C's his first grading period, and he's now up to all A's and B's.  He's starting to make a few new friends, and he's finally finding things that excite him about some of his classes.  I am so proud of him for working so hard to succeed in school.

Our home life has been particularly challenging.  Some days, we don't know what is typical preteen boy attitude and sibling rivalry, and what is his Tourettes and rage.  Other days, it's very obvious that Tourette Syndrome is taking hold of my sweet boy and shaking him up.  We'll go days - or even weeks - without a major episode of rage.  Then everything that he must've been bottling up during that time just seems to explode from inside.  Whenever possible, we try to let him stay in his room where he can release all the anger and frustration without having to worry about anyone getting in the path of his sometimes violent behavior.  When his rage does reach that violent point, however, we're still relying heavily on the anti-histamine his doctor had previously prescribed for anxiety. The good news is that we seem to be having more good days then bad.

His tics have become a part of our daily life, with very short periods of off-time in the typical wax-wan pattern that is common with Tourette Syndrome.  Thankfully, most of those are easy to live with for all of us, especially for Monster Man.  Who cares if he's blinking a lot, clearing his throat, tapping his hands (a new tic), sniffling, or chewing his fingers (a tic we've been dealing with for several years without me realizing it was a tic)?  We'll take those tics if it means having our sweet boy around!