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!

Church Retreat

I sent Monster Man and Angel Baby on a youth retreat with the church this weekend.  While it normally wouldn't have been such a big deal, I was having a hard time deciding whether or not they should go this time.  Their fighting has gotten pretty bad lately, which has really affected Monster Man's mood.  He's been getting angry much quicker, which means that I've had to be on lookout for it to turn into full-blown rage.  Thankfully, it hasn't gotten that far, and we've been able to avoid having to use his medicine, but I was still nervous about how he'd do without me there to watch for telltale signs.  After all, I'm the one that usually gets to see him at his worse, so I know what to look for before it turns into something really bad.

Add to all the fact that we have a new youth minister, and you can see why I wasn't as sure about them going this time.  I love the new youth minister and his wife, and I know they will be a positive influence in our church, but I am more than a little nervous about them seeing this whole other side of Monster Man... the side that people who don't know about his issues might see and think that he's a bratty, disruptive, or disrespectful kid.  I have informed the new youth minister about Monster Man's TS, and about all that goes with it, but he had almost 40 kids with him that he were new to him, and I know that it could be hard to remember what I told him when he's trying to remember all the details about each and every one of the kids in the group.  There were other chaperons on the trip, some that might be able to distinguish what is normal Monster Man behavior and what might be him getting into trouble, but I've still been nervous about not being there with him this weekend.  Still, I've had to learn to put my faith in God and to trust that he'll be okay without me there to intervene.

I am looking forward to having both Monster Man and Angel Baby home tonight.  I want to hear how everything went, to find out if they enjoyed their weekend away, and to find out what they learned.

24 Hours for the Tourette Syndrome Association

In October of 2010, a go-karting world record was set.  This record was for a solo driver who drove a go-kart 801.38 miles in a 24-period.  The driver of that world record drive was Lloyd de Boltz-Miller from the United Kingdom.  Earlier this week, that record was broken.


Trey Shannon, a 26-year-old aerospace engineer living in Virginia, took his seat behind the wheel of his go-kart on the morning of October 25 with two goals.  One, to break the previous go-karting world record.  Two, to raise money and awareness for the Tourette Syndrome Association.


Trey Shannon, like my Monster Man, has Tourette Syndrome.  He has kept a positive attitude, never allowing his TS to hold him back from doing the things he loves - especially racing.  It is with other children facing a life with TS in mind that Trey Shannon does was can to help the Tourette Syndrome Association.


Thanks to the help of many sponsors and a team of supporters, Trey Shannon drove 847 miles in 24 hours at New Castle Motorsports Park in Indiana, going well beyond the previous world record.  Congratulations to Mr. Shannon, and thank you for raising awareness for those living with Tourette Syndrome!

For news footage, please check out this link.

A video that explains Camp Twitch and Shout

This video was put together by one of the many inspiring girls at Camp Twitch and Shout, the wonderful camp that Monster Man attended over the summer and that our family attended for family camp a couple of weeks ago. The song playing in the background is one of the main theme songs that the kids learn at camp, R. Kelly's 'The World's Greatest'. It is such a positive message to teach these kids, that they can be what they inspire to be. The boy speaking at the end, sharing his wish for the camp, is Monster Man.

There are many great ways to help Camp Twitch and Shout, including 'Spin for Kids' and 'Denim and Pearls', as well as through the Pampered Chef fundraisers I have been holding (I will be holding another closer to Christmas). If you are interested in helping Camp Twitch and Shout, please check out the website.

Stress and sickness

I really don't like it when Monster Man is sick.  When he's sick, it's a whole new experience compared to what it is like when Angel Baby and Little Man are sick.  With Monster Man, even a slight cold can completely knock him out and make him miserable.

Take today, for example.  He started coughing a little last night, but it was nothing major.  In fact, it almost sounded like he was making himself cough, something he's done off and on in the past as one of his tics, so we just kind of ignored it.  This morning, he woke up feeling miserable.  What had started off as a fake-sounding cough last night had turned into a sore throat, headache, stomach ache, body aches, slight cough, and a low-grade fever.

I could barely get him down the stairs when I woke the kids up for school, let alone get him to get dressed.  Even though he knew he was staying home and that he needed to get ready for a trip to the doctor (I thought maybe he had strep throat since it was going around and his tonsils were rather large), it was still a battle to get him to get up and eat breakfast.

It didn't take long for Monster Man's body temp to start to rise.  While I couldn't find the thermometer to take his temperature (which isn't an easy task to begin with when he's ticcing), I could tell that he had gone from being a little warm to burning up.  It's not uncommon for Monster Man to spike a fever like that, and he has even been known to develop a fever when he is stressed out.  And Monster Man was definitely stressed out this morning.  He was convinced that he was majorly sick, and the stress not only added to the fever but also to the severity of his tics.  While in the waiting room at the doctor's office, he was so concerned that his head was shaking almost nonstop during our wait.  The head-shaking didn't slow down until he realized that he was going to get to see his usual pediatrician (who has recently returned from maternity leave).

The trip to the pediatrician's office revealed that he didn't have strep throat after all.  The doctor said his symptoms appeared to be viral.  Amazingly, once he realized that he was going to make it and that he didn't even need a prescription, his temperature started dropping.  By the time we walked back out to the car, he was even smiling and asking if we could go to the store.

It's become apparent to me that Monster Man is able to make himself sick whenever he gets worked up.  It's almost like the stress triggers his entire body to start acting up.  I don't really think that he knows he is doing, just that he gets himself so worked up that he makes himself sick (and not just the usual sick-to-the-stomach kind of sick that usually accompanies stress).

Hopefully we'll be able to find a way to help him cope with his stress without becoming so sick.

Camp Twitch and Shout Family Camp

I've mentioned previously that Monster Man attended Camp Twitch and Shout over the summer, and that the camp has come to mean a lot to him and to our family as a whole.  During the weekend of September 23 - 25, we got to experience Camp Twitch and Shout as a family.

When we arrived at the camp on Friday night, we were a little nervous.  We knew we would be sharing our cabin with another family, but we didn't know who that family would be.  What would it be like to be put in a cabin with a family we didn't even know?  I guess that is what Monster Man must've felt like when we first dropped him off at camp over the summer.  

We'd barely gotten a chance to introduce ourselves to our roommates (which, thankfully, turned out to be the family of one of the boys from Monster Man's summer cabin) when it was time for dinner, followed by some get-to-know-you games and then a dodgeball tournament.

The tournament was followed by s'mores around a campfire and then bedtime.  We had to turn in early because our Saturday was packed with activities.  Shortly after our breakfast, the kids were taken off in supervised groups while the parents had some time for a quick meeting followed by some Minute-To-Win-It games.

Afterward, we had some family time.  We took a few minutes to practice some archery, and then my hubby and the kids all went either kayaking or on paddle boats.

After lunch, the kids went back in their supervised groups while the adults got to enjoy some activities without the kids.  For my hubby, this meant wall-climbing.

After a kickball game and some more family time, it was time for a cookout in the pavilion.  Angel Baby enjoyed this a lot, since she ended up dancing before dinner with some of the counselors and campers.

That night, despite the cool temps, we had a pool party and a build-your-own ice cream sundae event.  We all enjoyed both events before turning in for the night. 

Sunday morning was a little sad.  While we enjoyed the activities that were planned, we knew that our time together was coming to an end.  After breakfast, we spent some family time doing activities we enjoyed.  We spent a little time fishing, and Little Man caught his first fish.

After our family time, the families all came together for some messy olymp-tics games.  

We barely had time to clean up before it was time for lunch and then closing ceremonies.  As part of the closing ceremonies, we were asked to write our wishes for Tourette Syndrome or for Camp Twitch and Shout on a card, which we attached to a balloon and let go at the end of the ceremony.  During the closing ceremony, everyone was invited to come up on stage and share his or her wish with the other campers.  Monster Man shared his wish, that he could have camp everyday, with the crowd before we released the balloons.

We were sad to see family camp come to an end, and to have to say goodbye to all the new friends we made while we were there.  We are already looking forward to Camp Twitch and Shout's family camp next year!