Followers

Sunday, November 13, 2011

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.

Friday, October 28, 2011

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.

Sunday, October 9, 2011

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.

Thursday, October 6, 2011

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.

Tuesday, October 4, 2011

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!

Monday, September 5, 2011

Eleven!

Tonight, I went into Monster Man's bedroom and told him goodnight, realizing that it was the last time I would be telling that to him as a 10-year-old.  Tomorrow, my Monster Man turns 11!  What a wonderful 11 years it has been leading up to this big birthday.









Happy 11th birthday, Monster Man!

Thursday, August 18, 2011

Fundraiser for Camp Twitch and Shout

Camp Twitch and Shout, located at Camp Will-A-Way in Winder (in partnership with Camp Twin Lakes), is a week-long camp for children ages 7 to 17 who have Tourette Syndrome. As many of you know, Monster Man attended this camp over the summer. It did amazing things for him, helping him connect with others like himself while boosting his self-confidence. Camp Twitch and Shout has given so much to my son, and I want to help give back to the camp. More information about the camp can be found at http://www.camptwitchandsh
out.com/

From now until noon on August 31, I am hosting a fundraiser for Camp Twitch and Shout through my Pampered Chef website. Depending on the total sales, Camp Twitch and Shout will receive between 10% and 15% of the sales. In addition to the percentage, Camp Twitch and Shout will receive an additional $3 per cooking show (in the Atlanta area) or catalog show (anywhere in the U.S.) that is booked through the fundraiser. Even if you are not interested in purchasing any Pampered Chef items at this time, you can still contribute to this fundraiser either by booking a show or by passing on this information to others. Please feel free to send this invite to your family, friends, co-workers, etc so that they might be able to help raise money for Camp Twitch and Shout.

To check out the fundraiser, please visit my page at www.pamperedchef.biz/alissadorough. Once you are on the site, click on the words "Shop Now". When prompted to choose a host, you can either enter 'Camp Twitch and Shout' OR use the host name 'Twitch Shout'. This will allow you to view the catalog. If you are interested in setting up your own show to contribute the additional $3, please use the 'host a show' option to contact me. I will then be able to call you back to set up your show.

Thank you in advance for your help with this fundraiser!

Alissa Dorough - Pampered Chef Independent Consultant

www.pamperedchef.biz/alissadorough

Sunday, July 31, 2011

Ups and Downs

The past several weeks have been a series of ups and downs where Monster Man is concerned.  School starts this coming Thursday.  For Monster Man, that doesn't just mean a new school year; it also means a new school.  Monster Man will be moving up to middle school this year.

At the end of last school year, he was so excited about the new opportunities that lay ahead.  He was eager to join the band, attend after school clubs, and go to his first school dance.  Most of all, he was looking forward to having a locker.  Middle school would be filled with exciting changes!

Then the anxiety hit.  Kids in middle school can be mean, as Angel Baby so nicely informed him.  Middle school comes with more responsibility, and he suddenly realized that the school work would get harder too.  Just the thought of harder work alone was enough to bring Monster Man to tears.  He began to have panic attacks at the mention of middle school and the start of a new school year.

I was in between a rock and a hard place.  On one hand, I wanted to be able to stay at home and homeschool Monster Man again.  I wanted to be able to hold him back and protect him from all the things he found so frightening.  On the other hand, I knew that sheltering him from the things that scared him wouldn't help prepare him for the future.  I also knew that my own busy school schedule wouldn't allow me to be home to homeschool him.

Just when I was about to give up my own classes to stay home with him, he decided he was excited again.  Over the past couple of weeks, Monster Man has continued to go back and forth on the issue. One day, he's excited about going to school.  The next, he's back to being scared.  His backpack is packed and ready to go now.  We meet his teachers Tuesday night.  Thursday morning, I hope to be able to get him on the bus without his anxiety building up too much.  If it comes down to it, I will drive him to school to give him more time to calm his nerves.

I am sure he will be fine.  I can't wait for Thursday to get here so I can hear how his first day of middle school goes!

Thursday, July 14, 2011

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.

Monday, July 11, 2011

Camp Twitch and Shout

Monster Man had the honor of attending Camp Twitch and Shout last week.  This incredible camp offers kids with Tourette Syndrome the chance to spend a week with other kids like themselves, being themselves and not having to worry about hiding their need to 'twitch and shout'.

When we first dropped Monster Man off at his camp last Sunday, we were a little concerned about how he would do.  After everything we had read about the camp, and after the wonderful tour and friendly staff, we had no concerns about it being the right place for our son, but we weren't sure if he was ready for a week away from us.  We had some many questions about how he would react being away for so long, whether or not he'd have a rage episode, if he'd try to test the limits while swimming, etc.

Thankfully, the counselors had taken the time to get to know everything that we reported might present a problem during the week.  They had come to the camp prepared for anything Monster Man might throw at them, and they did an amazing job giving him what he has told us was 'an amazing week'.

Monster Man loved the camp so much that he was in tears when I went to pick him up, sad to be leaving his new friends behind him.  He is already counting down the days until the family camp in September, as well as making plans for his trip to camp next summer.

I am so thankful that he has Camp Twitch and Shout to help him make new friends like himself and to help him discover that he isn't so different after all (and that being different is a great thing to be!).

Tuesday, June 28, 2011

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.

Thursday, June 16, 2011

The End of a Good Break

Monster Man has had such a good break from some of the worst problems he faces with Tourette Syndrome.  After about five days in a row of panic attacks, which were also days filled with many episodes of rage, as well as about two weeks of a really bad head-shaking tic, he has managed to have almost a full week with no rage, no panic attacks, and very few mild tics.

Of course, Tourette Syndrome seems to like to throw us all for a loop.  We had some storms come through last night that evidently brought back some of Monster Man's anxiety.  He didn't come downstairs to let us know that he was scared, so he instead stayed in his room where he didn't sleep well last night.  Of course, that has affected his attitude for today.  We've already seen the start of what easily could've turned into episodes of rage had we not been able to get him calmed down before they worsened.  To top it all off, the storms started while we were at church last night, with us driving home in the storm, which set off the head shaking tic and also brought back his 'painful tic'.  As Monster Man's nerves were getting hit harder, his head was shaking faster, his eyes kept looking up in opposite directions, and he'd get that really wide smile.  Between the eyes and the smile, he had quite a headache when we got home.

It is so sad to see him go through these sudden changes, when even Monster Man isn't sure what to expect with each passing moment.  Sometimes, he asks me if he is 'losing it'.  Other times, he asks me what is wrong with him and why he can't learn to control the tics, the anger, and the anxiety.  I still don't have all the answers he needs, so all I can do is hug him and reassure him that everything will be okay.

Thursday, June 2, 2011

Panic Attack!

I knew anxiety pretty much goes hand-in-hand with Tourette Syndrome, but it still didn't prepare me for the major scare that Monster Man gave me Tuesday morning.  It was early in the morning.  Little Man was playing the Wii and Angel Baby was still asleep.  I was taking advantage of the quiet, lazy morning.  I sat on the couch, working on my computer, doing the first required assignments for my online classes, which were due to start the next morning (I like to get ahead as much as possible).  When Monster Man woke up, he came downstairs and curled up next to me on the couch, his head resting on my shoulder.

Within a few minutes of walking down the stairs, he started shaking uncontrollably.  He balled up almost in the fetal position, still keeping his head on my shoulder while bringing his knees to his chest.  He continued to shake like that, gasping every few minutes.  When I asked him what was wrong, he said he didn't know.  All he did know was that he didn't feel right and that he was struggling to breath.

He'd been experiencing some problems with anxiety the night before, so I figured the whole episode was anxiety related.  I had him breath deep, having him copy my examples in an effort to calm him down.  I considered calling his pediatrician, but I knew if I was advised to bring him in that he would never let me get him in the car and drive him there.  He wanted me to hold him, to reassure him that he'd be okay.  Instead of getting up to make the call, I decided to continue the breathing exercises with him, all the while running my fingers through his hair and keeping one arm wrapped around him.  After what seemed to me like forever but was probably only a matter of minutes, he fell asleep in my arms.  He stayed there, sleeping in my arms, for about 15 minutes before he woke up feeling a lot better but still exhausted.

In asking for advice, I discovered that panic attacks are not uncommon in those with Tourette Syndrome.  I also found out that his behavior during the attack was pretty typical for those who have experienced them or have children who have experienced them.  It was a huge relief to find out that this was just another normal part of the TS, and that he isn't (as he started worrying after he had it) 'going mad'.  He's had two more panic attacks start to appear since then, but he has been able to control them with breathing and prayer before they got as bad as that first attack.  If he ever has another bad one, I've received some good tips on how to handle them:  deep breathing, warm showers, massages, and distraction techniques.

Monday, May 30, 2011

The Need to Protect Him

There are times when I feel like there is such a strong need to protect Monster Man.  It seems like there is always something, somewhere that he needs me to protect him from.

The outside world can be such a cruel place, especially with those who don't understand what he is going through.  During the early stages of one of his rage episodes, I overheard someone who was witnessing it state that he was being a brat and that he needed disciplined.  They had no idea what he and I were both dealing with at that particular moment, that his rage was not something that he could easily control, and that disciplining him in any way other than to remove him from the situation and give him time to 'cool down' would only have made the situation worse.

The cruelty of those that make remarks like that are not the only thing he needs protected from, though.  He's recently started having a severe head-shaking tic.  There are times when it is very mild, and there are other times when he shakes his head repeatedly to the point that he makes himself dizzy.  As you can imagine, this means that certain situations are not the best to have him in while his tics are at their worst.  We were at a cookout yesterday, and he was swinging rather high on a swing right near our picnic table.  As he was swinging, he was shaking his head worse than he had all day.  I had images in my head of him getting dizzy and falling from the swing.  Later, we were swimming in the lake where we were having the cookout, and he was still shaking his head rather hard.  I could tell by his expression that he was getting dizzy, but he was refusing to admit it because he didn't want me taking away the fun he was having with his friends in the water. He isn't a very strong swimmer, so I already didn't want him going anywhere where he couldn't touch the ground, and the head shaking made me even more determined to keep him in shallow water.  He was heartbroken that I didn't trust him enough to let him go into deeper water, but I had that need to protect him.

The sad thing is that I know I will not always be there to protect him from things that some people might not see the danger in.  I won't be there to keep him from going headfirst into deeper water, to keep him from getting in over his head in a situation that he might not be able to get himself out of.  And I won't always be there to keep him from being subjected to the cruel comments and stares of people who don't understand the challenges he faces on a daily basis.  I will eventually have to allow him to protect himself and to know how to handle these situations.

Saturday, May 28, 2011

Goodbye Elementary School

Monster Man's birthday is September 6, just a few days after the cut-off date for our school system.  As a result, he started off school a year behind most of the kids his age.  While this may have benefited many other kids, it wasn't the case for Monster Man.  He taught himself to read before pre-k, catching on to the reading lessons I was giving to Angel Baby.  By kindergarten, he had surpassed his sister's reading level and was actually reading (and understanding) books from the Harry Potter series.  His skills in math were advanced, as well, so he quickly became bored in school.

Last school year, we made the decision to pull him out of school and homeschool him using Georgia Cyber Academy, which allowed him to work at his own pace.  Since he was already advanced, GCA allowed him to complete both the 3rd and the 4th grade at home.  He returned to public school this school year in the 5th grade.

Prior to his diagnosis of Tourette Syndrome, and before he started having so many problems as a result of his TS, we had no doubt in our minds that we'd done the right thing for him.  As he started struggling more with short-term memory, numerous tics, and his OCD leading him to believe that he was doing poorly in school just because he wasn't getting all A's, we began to question if even being back in public school was the right thing for him at all.  Thankfully, he had teachers that were more than understanding and were able to work with him in just the ways that he needed.

I am pleased to announce that Monster Man completed both the 5th grade and elementary school on Thursday!  We are working on ways to improve his memory or to overcome the issues he was having with forgetting things (sometimes even forgetting to turn in work he had completed), such as writing more down in order to keep track of what he needs to get done.  He is looking forward to starting middle school in the fall!

Monday, May 16, 2011

Tourette Syndrome Awareness Month

May 15 through June 15 is officially designated as Tourette Syndrome Awareness Month.  This is a month made to help bring awareness to others about an obstacle so many people around the world live with on a daily basis.  They are challenged with tics, many of which can make life hard to live with.  They face a life full of challenges that are both physical and emotional.  Their brains take control of their bodies, and they have little control over the actions their bodies are taking at the hands of their overly active brains.  Each day, those with Tourette Syndrome battle with their brains, fighting to take control over the desire to blink excessively, shake their heads, repeat words, and so much more.

The most common thing I've heard as a parent of a child with Tourette Syndrome is one simple question.  "He's not going to start cussing is he?"  (BTW- the proper term for the use of obscenities and slurs is coprolalia).  It sounds innocent enough, but it really shows just how misunderstood Tourette Syndrome is.  I recently encountered someone who suggested that Tourette Syndrome had a spiritual link because "it almost always is accompanied by swearing".  It made me realize just how wrong people often are in how they view this condition.  According to the Tourette Syndrome Association website, "cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS."  Somehow 15% doesn't sound like "almost always" to me.  And the truth is, the majority of those I've talked to that either have TS or have family members with TS are Christians with a strong sense of faith and a very good connection to God.  Tourette Syndrome affects people of all religions, just as it affects people of all races, genders, and even income levels.  Tourette Syndrome doesn't discriminate.  It doesn't select those who are less spiritual than others.


As I've mentioned, those with Tourette Syndrome are faced with a number of challenges.  Tourette Syndrome often coexists with disorders such as Obsessive Compulsive Disorder (OCD), anxiety, Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), Sensory Processing Disorder (SPD), Sensory Integration Disorder (SID), insomnia, bipolar, depression, or any number of other behavioral, learning, or sleeping disorders.  As if these challenges are not enough, many people who live with Tourette Syndrome are faced with the reactions of those who do not understand the condition.  There are the countless stares, the snide remarks, and the bullies.  Sometimes, there are even those who deal with family members who, for lack of understanding or out of embarrassment, make nasty comments or even go to the point of emotional abuse rather than giving support, comfort, and love.  The home and the family should be a comfort zone for those with TS, but sadly this isn't always the case.


While there are those with Tourette Syndrome who would rather hide their condition from those around them, there are many more who long for acceptance and understanding.  Please take the time, during Tourette Syndrome Awareness Month and the rest of the year, to find out more about TS and the lives of those living with it.  Should you have any questions about Tourette Syndrome, please check out the links along the side of this blog or feel free to ask me any questions that I might be able to help you with. 



Friday, May 13, 2011

A mixture of emotions

The past couple of weeks have been pretty tough.  Monster Man is alternating between episodes of rage and episodes of extreme clingy-ness.  One minute, he's in full rage mode, yelling and throwing things over what seems to us as no big deal (like asking him to clean his room, help unload the dishwasher, or even brush his teeth).  The next minute, he's practically attached to my hip, begging for forgiveness for having been in an episode of rage previously.  No matter how many times I tell him that it's okay, that I understand he is having a hard time controlling his emotions, he still apologizes.  And then he apologizes for apologizing.  And sometimes he apologizes for apologizing for apologizing...

I'm beginning to think that he's living in a constant fear of hurting someone's feelings.  While he's having an episode, he tells us how much he hates us and how much he thinks we hate him.  He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us.  He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs.  It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.

The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it.  I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere.  If we're staying home, I try to just let him work through the emotions.  If we don't have to be somewhere, then we stay home when he's having a bad day.  It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well.  We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.

In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps.  While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right).  He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues.  My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come.  I guess only time will tell.

Monday, May 2, 2011

Why Anti-Histamines Work

I have been doing a little research into why the anti-histamine that Monster Man is on has been helping so much with his rage.  Someone on the TSA Facebook page had recently mentioned that her doctor said there was a histamine-connection to Tourette Syndrome.  I am posting links to some articles on the subject that help to explain this connection.  To me, it offers more explanation as to why an anti-histamine has been so successful at controlling Monster Man's rage and bringing down the number of episodes he's been having at times when they'd otherwise be at their worst.

Potential Role for Histamine Identified in Tourette's Syndrome

Abnormalities in Brain Histamine may be Key Factor in Tourette Syndrome

A Surprising Clue to Tourette Syndrome

More control

We had another softball game on Saturday morning.  The past few weeks at softball, as I've mentioned, had been filled with on-again/off-again episodes of rage.  One of the big things we were dealing with as a result of the rage was that Monster Man didn't want anyone touching his softball equipment, nor did he want to share his treasured spot on the pitcher's mound.  He skinned his knees up pretty badly early in the week last week and was still having problems walking as a result, so I'd been warning him for a few days that I was going to put him in the outfield so he didn't have to run as much.  At first, he was okay with it, but as game day rolled around he let me know that he was not happy at all with this arrangement, and he kept begging me to put him in the pitcher's circle.  He even went as far as refusing to get dressed Saturday morning until the very last possible second, when I threatened to take him in his pajamas (I've mentioned before that I am coaching, so I have to be at the fields).  He was NOT playing if he couldn't be pitcher.

Once at the fields, he sat in a chair and pouted while watching Angel Baby's game.  During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend.  I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game.  He went into the outfield without a single complaint.

The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit.  The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes.  She is the one person that he fights the hardest not to let her touch his softball equipment.  So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her!  And he didn't throw a fit when I decided to keep him in the outfield for the entire game.  Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.

The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help.  I am so relieved that I have found something to help him control himself when his emotions get the best of him.

Tuesday, April 26, 2011

A Little Control

After a rage-filled night at the ball park on Friday night, I was beginning to get a little desperate to help Monster Man find a way to control the rage.  Since I coach his team, I have to be at the ball fields for every game.  Since my hubby is working long hours, Monster Man has to be at the fields with me.  And since softball is one of the few things he looks forward to all week, Monster Man does not sit out at the games.  There is no leaving him home when he's had a bad day, no having him 'sit one out'.  I knew I had to find a way to help him have a calmer day at the ball park on Saturday.

I think I've mentioned before that the kids' current insurance will not cover anything for Tourette Syndrome.  I cannot get him the additional testing he needs for school, the therapy he needs to help him learn to control certain behaviors, or the medications he needs to help with the anxiety.  His pediatrician had previously prescribed something very mild that is similar to a stronger form of Benadryl.  In fact, Angel Baby has the same prescription for when she has allergic reactions.  In Monster Man's case, the medicine is supposed to be used to help mellow him out when his anxiety starts up.  We had never given it to him before because I'd never seemed to have it with me in cases when he ended up needing it, and I've had to talk him through controlling his breathing to help calm him down when I couldn't easily remove him from the situation.  I wasn't really sure how well the medication worked, but I decided that if it was supposed to help calm him down when the anxiety attacked, maybe it would help with the rage.

Before heading to the fields on Saturday morning, I gave him a dose of the medicine.  Within 30 minutes, he actually seemed happier than he had in days.  He was laughing and telling jokes with his sister, rather than yelling at her every time she even looked his direction (the way he had been for over a week).  When we first got to the fields, he wanted to love on me and kept giving me hugs rather than glaring at me and yelling over every little thing that didn't go his way.  During his game, he only had two minor setbacks, nothing compared to the experiences he'd had a week earlier.  He was able to calm down much quicker and to get back under control.  In fact, he told me that he felt more in control of his emotions than he had in a long time.

This particular medicine is not going to be a daily thing for him.  It is still going to just be used on days when he needs more help controlling his rage.  It now has a home in my purse, where I can easily find it and distribute it when he's starting to have a meltdown (hopefully before he goes in full rage mode).  It isn't a long-term solution, but I know it's there if we need it.  It's comforting to know that we have finally found something to help Monster Man for now.

Sunday, April 17, 2011

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.

Thursday, April 14, 2011

Another Inspiring Artist

A couple of weeks ago, we were listening to our favorite radio station - 104.7 The Fish - out of Atlanta while we were driving to the ball fields.  We heard a new artist on the radio that my kids and I all truly enjoyed.  This young lady was the latest artist to be picked up on Toby Mac's record label, Gotee Records. My kids were especially excited to find out that this she was from Atlanta.  This new artist is 19-year-old Jamie-Grace.

My kids were excited to learn that someone that young could already be on the road to a successful singing career (something Angel Baby hopes to do one day), singing Christian music and sharing her gift with the world.  Two days after hearing the song 'Hold Me' for the first time, I found out something about Jamie-Grace that made her even more of an inspiration to our family.  Jamie-Grace has Tourette Syndrome.  Since her diagnosis at the age of 11, Jamie-Grace has been sharing her story and her faith with audiences around the United States.

Jamie-Grace joins the ranks of many others who have soared through the challenges of Tourette Syndrome, not allowing it to hold them back.  It is so important for those with TS to see others following their dreams and to realize that they can achieve their dreams if they just believe.

Please enjoy the video of Jamie-Grace's 'Hold Me'.



Wednesday, April 13, 2011

Rage - Looking Back

I often catch myself saying that Monster Man's symptoms appeared out of nowhere - that one day he was a normal, happy-go-lucky boy and then suddenly he was filled with tics, anxiety, etc.  Looking back, though, I realize that the rage started much earlier than his other symptoms did.

Somewhere between the ages of two and three, Monster Man developed a temper that went far beyond the terrible twos, no matter how much I tried to pass it off as just that.  I remember him being about two and a half and getting extremely upset about not getting his way.  He went to the end table by the coach and flipped the table over with one large yank on one of the legs.  The lamp, picture frames, etc that were on top of the end table went flying.

Another time, when he was almost three, he through a fit in a parking lot that resulted in me holding him tightly while sitting on a grassy median, trying desperately to get him to calm down.  I finally managed to get him inside the car, sitting in my lap until he calmed down (at which point I put him in his car seat so we could head home).  I didn't want him running in front of a car, something he'd almost done in the process of our struggles.  As I closed the car door, an off-duty police officer knocked on the car window asking if he could help me, stating he'd watched me struggling for over 45 minutes.  Just seeing the officer finally helped to calm him down, and we were able to get him in his car seat and ready to leave.

Still another time, a few months after his third birthday, I remember sitting with him in my lap, trying to get him to stay quiet at an event at his sister's school.  When I told him he needed to calm down, he suddenly got so angry that he turned around and tried to choke me.  It didn't take long for me to get him under control, but you could still see that look in his eyes that he gets to this day with his rage episodes.  Once he calmed down, he was back to snuggling with me and telling me how much he loves me.

It always amazes me that he can be so loving one minute and so angry the next.  He reminds me of Jekyll and Hyde, suddenly changing from good to bad and then back to good, usually without any warning.

Tuesday, April 12, 2011

Another sleepless night

Nothing gets Monster Man's anxiety acting up like knowing there is the possibility of severe weather heading our way.  Yesterday, we were told to expect severe storms overnight.  Our county was amongst the many included in a tornado watch effective until 3am today.  Usually, I try to keep Monster Man from finding out about these watches, not wanting to scare him.  Last night, though, he heard me talking to my hubby as I went through the process of setting our weather alert radio (which my hubby had previously packed away when trying to help clean up our room).

The process of setting the radio only took a few short minutes, and we didn't even think Monster Man had heard the conversation.  About five minutes after the radio was set, though, Monster Man started 'hearing' the storms (they hadn't even reached Georgia yet when he was already sure he heard the storms).  While my hubby was watching television, Monster Man was sure he heard the weather radio alerting us of a tornado.  He kept jumping out of bed, telling us that the bad weather was hear.

Oddly enough, it never even stormed at our house.  In fact, it barely even rained.  Either way, just knowing it could've happened was enough to keep Monster Man awake most of the night.

Wednesday, April 6, 2011

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.

Sunday, April 3, 2011

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!).

Thursday, March 31, 2011

Fish Oil

I think I've mentioned before that my hubby has epilepsy.  About six months ago, we got to noticing that he has had an improvement even in the number of little 'spasms' he has when he first wakes up, and that the improvements have seemed to have started since he began taking fish oil pills to help lower his cholesterol.  We thought it was a coincidence, but we kind of questioned whether or not it really could've played a role in his improvements.

While I was reading "Against Medical Advice", I happened to look at the back at the list of medications and vitamins that Cory Friedman had tried in an effort to improve his tics.  I notice that one of the items on the list was fish oil.  This really sparked my curiosity.  I mean, we'd already noticed that my hubby had improved.  Was it really possible that fish oil could improve the symptoms of neurological disorders?

I got to researching online, and it looks like it really is a possibility.  The DHA from the omega-3 fatty acids are linked both to brain and eye function.  I'd known that it was recommended for women to take during pregnancy to benefit the unborn baby, but I hadn't realized that adults could just as easily benefit from it.  From what I've read, it is possible that the DHA levels - required for brain and eye function - are lower in those with neurological disorders.  Since the levels are lower, and the small amount is being split between brain and eye function, there can symptoms such as the 'spasms' my hubby has been experiencing and the tics that Monster Man experiences on a daily basis.

I picked up a bottle of gummy vitamins today.  These are supposed to be mainly the omega-3 fatty acids from fish oil.  I'm going to have Monster Man start taking them every day to see if they help him like they have his dad.  Right now, anything that won't harm him is worth a shot.

Monday, March 28, 2011

Facing his biggest fear

Monster Man's biggest fear, especially since he's started having problems with anxiety, has been heights.  Going to a hockey game, he had to be calmed down and eased to our seats when he realized we were sitting higher up than he expected.  When we stopped to see Tallulah Gorge last fall (we stopped at a gift shop after a camping trip, and the gift shop had a viewing deck), he spent 45 minutes working himself up to the point that he could go to the railing of the viewing deck and look out at the gorge, though we had told him he could stay inside the gift shop with one of us while everyone else looked at the gorge - a stop that could've taken about 10 minutes.  Just knowing that he was visiting my mom in the mountains last summer (you can't even tell you're in the mountains where she is at), he was sure he was too high up and was going to fall off the mountain.  Like I said, heights terrify him.

The fact that he's so scare of heights is what makes his latest behavior so interesting.  I've heard from so many other parents of children with TS about this desire to do dangerous things.  In 'Against Medical Advice', Cory Friedman grabbed the steering wheel and pulled it in the opposite direction she was trying to turn.  Another time, he climbed as high up in a tree as he possibly could, almost falling on multiple occasions.  In Monster Man's case, he is trying to climb up different things to jump off of them!  At church, he gets on the outer edge of the porch, about six feet off the ground, and tries to jump off.  At the ball fields, I've caught him climbing up a wall that is approximately ten feet high, getting ready to jump off of that.  We stopped at a park this past Friday, and I caught him getting ready to jump off the playground equipment, right next to the top of the slide. I've been able to stop him in all these cases, before he could manage to get hurt in the process of his jumping. I can't imagine what he's doing when I'm not looking!

In Monster Man suddenly having this desire to face his biggest fear, and to overcome it by jumping off of high places, he has given me a new fear, one I'm half-expecting to become a reality at some point in the future.  I am scared that he will end up jumping off something one day, before anyone can stop him, and that I'll be getting a phone call to take him to the ER for a broken arm or leg.  Hopefully he'll get over this desire before he manages to hurt himself.

James Patterson's Against Medical Advice

I have recently started reading "Against Medical Advice" by James Patterson and Hal Friedman.  The story centers around Hal Friedman's son, Cory, and his struggles with Tourette Syndrome.  Cory's story began at a much younger age than Monster Man's, with his tics becoming noticeable shortly before his 5th birthday.  That led the family on a long journey, filled with many medications and even more struggles.

I'm not quite 100 pages in yet (I've only been reading it for two days), but I've already noticed so many parallels between Cory Friedman's experiences and the experiences Monster Man has had thus far.  The tics coming on suddenly.  The waxing and waning of the tics (getting better, worse, better, worse, and so on).  The constant repeating of the word "sorry".  Repeating what others say (Monster Man does this on rare occasion).  The anxiety that seems to increase the severity of the tics.  Even the need to laugh off some of the problems so he's laughing with the other kids instead of them laughing at him.   I've already found myself heartbroken at times just realizing what Monster Man is really going through.

I'm really enjoying reading this book.  It has given me so much insight into what my son, and others like him, experience on a daily basis.  I was told by many on the TSA Facebook page that it is a must-read, and I have to say that I agree with them!

Tuesday, March 22, 2011

Some interesting occurrences

We've had a couple of interesting occurrences over the past few days that have really stuck out as being different, even when it comes to Monster Man.

One day last week, I took the kids to the grocery store with me to get a few items.  Not much, and I planned on being in and out of the store in about 10 minutes' time, if that long.  While walking down one aisle, I happened to notice that Monster Man kept drifting over to the right, along the shelves, so that he could rub his shoulder on the different items hanging down off the sides (like the packs of seasonings that are clipped on chains), as well as rubbing his shoulder on the coupon machines.  I wasn't sure what he was doing, so I pulled him away before he could 'bump into' the next one.  When he realized he'd missed one, he actually had to take a step back and make sure he bumped into it before he could continue down the aisle.  He progressed like this through the whole store, and I don't think he really even realized what he was doing.  He had that glazed over look to his eyes that he sometimes gets with his tics.  Sure enough, after talking to a few other parents of children with TS, this is something they have experienced!  Since that day, he's also done this walking along the plants in a home improvement store.  Needless to say, I'm not taking him down any aisles filled with glass objects for a while.

Yesterday, Monster Man came home from school slapping himself on the arms.  He kept complaining that it felt like someone was biting him on the arms (not the usually feeling of itchiness caused by a bug bite kind of biting, either).  He said he'd that feeling all day long, and it continued until he went to bed.  I am anxious to see if this has continued when he gets home from school.  Someone suggested to me that it could be a tic and that he's trying to explain why he is slapping himself.

Thursday, March 17, 2011

Trying to Reach a New Understanding

Tourette Syndrome is so often misunderstood.  When I first started telling family and friends that Monster Man most likely had Tourette Syndrome, the most common response I got was "He isn't going to start cussing is he?".  Sadly, this is one of the most misunderstood things about Tourette Syndrome.  The reality is that cussing, or coprolalia as it is officially called, is actually very rare.

Most people with Tourette Syndrome have similar tics to what Monster Man is experiencing - eye blinking, throat clearing, sniffing, and other similar movements.  Some are a little more complex, such as the times when Monster Man starts taking three steps and then kicking himself in the back of the leg.  There is such a variety of tics that are experienced, and they range in varying degrees.  Tourette Syndrome has many faces.

In recent weeks, there has been a little more awareness about Tourette Syndrome.  In fact, TS is making headlines thanks to American Idol finalist James Durbin.  James Durbin has both Tourette Syndrome and Asperger's (a form of autism).  His appearance on American Idol has been bringing about a new interest for many looking for find more information on both Tourette Syndrome and Asperger's.  James Durbin is helping Americans reach a new understanding.

I found a great news clip this morning from Atlanta's Fox 5 that talks more about James Durbin and gives a little more insight into life with TS.  Thank you to Fox 5 for helping spread the word!


Tuesday, March 15, 2011

Leg Pain

For many years now, Monster Man has been experiencing severe pain in his legs.  Sometimes the pain gets so bad that he doesn't even want to walk, and he just lays there, holding his legs and crying.  I always feel so bad for him, especially when it sneaks up at times when we don't have medicine on us.  I usually try to remember to keep ibuprofen with me for times like that, but there are occasions when I've taken it out for one reason or another, or I've run out and haven't had a chance to buy more, and he starts hurting when we're away from home.

We usually try to massage his legs when it starts up, hoping to offer him some relief.  Sometimes it requires an ice pack.  Sometimes we have to rub him down with Icy Hot to give him the relief he needs.  Almost always, the ibuprofen is a requirement in order for his legs to stop throbbing.  It is heartbreaking to see him in so much pain!

I've recently discovered that many people with Tourette Syndrome complain of leg pain like this.  From what I'm understanding, they have tics in their legs that are causing the pain to arise and to worsen.  I wish there was a way to train him to have a different tic at those times, like some people are able to do with other tics (screaming being replaced with whistling, cussing being replaced with similar but more acceptable words, etc).

Monday, March 14, 2011

Time Change Rage

We had been doing so well in recent weeks that I'd thought we might be over Monster Man's anger issues.  Sure, he'd had his share of being upset over the things most kids get upset about - sibling rivalry, not getting his way, etc - but he still seemed to have gotten rid of the anger that tends to build up and then come barreling out of him almost in a fit of rage.

He didn't feel really well all weekend.  For the most part, he was fine.  He'd get upset about something and then start laying around.  Whenever he'd start laying down, upset, he'd spike a fever and start complaining of a headache and stomachache.  My hubby used to do the same thing as a child, kind of as a stress reaction, and it didn't take us long to figure out that was what was going on with Monster Man this weekend.  Once he got up and got moving, especially once he found something fun to do, his fever would drop and he'd be back to normal.

Between this and the time change, it was not much of a surprise that Monster Man was in such a bad mood this morning.  He had napped quite a bit over the weekend when he wasn't feeling well, but he could not seem to get to sleep last night when he was sent to bed for the night.  This morning, he dragged to get around and then had to be rushed to get out of the door before the bus arrived to pick him up.

He seemed to get upset over everything this morning.  I told him to make sure he got his jacket, he yelled that he knew and then glared at me.  I told him that he needed to make sure he had his backpack, he yelled that he already had it.  At one point, he got mad and sat on the steps because I told him not to stand with the front door open (didn't want him letting out the dog).  Then he refused to talk to me except to yell at me even more.  I was proud of him, though, because I saw him pick something up to throw it, and then he caught himself and put it down before he could act on impulse.

Unless you've seen Monster Man at his worse, or unless you've lived with someone with the same anger issues as Monster Man, you might easily pass it off as just being typical moodiness in a boy his age.  However, those who have experienced what I have with Monster Man realize that there is quite a difference between the two.

I am hoping he will be back to my happy little boy once he gets home from school today.

Friday, March 11, 2011

He's a winner


Last night, Monster Man had his first ever science fair.  For his project, he made a couple of hovercrafts.  The first used a CD, a bottle cap (like the caps on a dish soap bottle), and a balloon.  The second used a paper plate instead of the CD.  He wanted to test which made the better hovercraft.  As he suspected, the CD worked much better.  It was a lot of fun putting the two on the floor and seeing how they traveled.  The CD glided almost three feet from it's starting point, while the plate only moved about an inch.

The experiment went really well, and he did a great job with the display.  When we went to the science fair last night, we got to see all the other science fair projects.  This was for the gifted program in his school, and there were science fair projects from second grade, third grade, fourth grade, and fifth grade.  There were so many great experiments, and it was fun checking out all the displays.

The best moment for Monster Man, though, came when he was awarded second place for the fifth grade level.  I am one proud mom.  He did so well!

Tuesday, March 8, 2011

Changing my own focus

One of the mothers on the National Tourette Syndrome Association's Facebook page posted a link last night to a blog post she had written on Giving up vs. Letting up.  She originally wrote the article almost a year ago, but I think she shared it with us at the perfect time.

Lately, I've had a lot of concern over about Monster Man and the issues he has had alongside the Tourette Syndrome.  Most of the time, we don't notice his tics anymore.  However, we can't help but notice his anxiety, the recent problems with lying, and the fact that he's been so easily distracted the past few days.  It's hard not to notice the anger he has been quick to express on more than one occasion.  Some days, it has seemed like my little boy has been slipping away from me, and it's been easy to want to search for any possible way to bring him back to me.

I've mentioned before that Monster Man has told me that he doesn't want any medication to take away his TS.  Instead, he's told me that God gave him TS to make him special.  He likes his tics because they are part of what makes him who he is.

The article reminded me that the TS is just a part of who Monster Man is.  He is so much more first.  I just have to stay focused on the comic, the artist, the softball player, the wanna be Nascar driver, the hockey fan, the intelligent student, ...

Sunday, March 6, 2011

Anxiety + Ice Hockey = Calmness?!

My mom pointed out to me something last night that I hadn't really taken notice of before.  With all of Monster Man's issues with anxiety and nervousness, she said, you would think that all of the action of ice hockey would make him one very nervous little boy.  I could see what she means - the puck is always flying from one side of the arena to the other, sometimes flying over the glass; the sport is very fast-paced, which can be hard to keep up with and can be very intense in itself; the players get into fights, oftentimes ramming other players against the glass.  It really is an exciting, very active sport.  It made her wonder how Monster Man can sit and watch the games without his anxiety getting the best of him.

It took me a moment to realize that ice hockey has the opposite effect on him.  With all the games we've gone to, he's rarely expressed concern over anything other than the time we sat higher up than he was comfortable with.  In fact, ice hockey seems to have a calming effect on him.  It's my guess that all the action gives him something to place  his focus on, something that serves as a distraction from the things that seem to bother him the most.  He does tic quite often during hockey games, and there are times when it seems like the severity of the tics seems to coincide with the intensity of the game, but his fears seem to melt away completely during game time.

He recently asked me if I could find him a little league hockey team to play on.  We're going to be busy with softball until the end of May, but I think that I might have to give in and either get him on a league or at least get him a few lessons so that we can see where it goes from there.  As much as the thought of him out there in the middle of the action worries me, I still think it might be good for him.

Friday, March 4, 2011

Anxiety leads to lying

Wednesday was Angel Baby's birthday.  While I was out running errands that day, I stopped at McDonald's and bought myself a Happy meal for lunch.  I threw the toy in Angel Baby's seat, knowing she'd find it when we left for church that evening.  Instead, Monster Man was the first to enter the van.  He gave Angel Baby the toy, insisting that he'd found it at school and had brought it home to give to her as a present.  Since I didn't want to encourage any lying, I told him that he knew that wasn't the truth and that I knew where it had come from.  Even as I explained what the toy was and where it had come from, he kept insisting that he was telling the truth.  He started crying, saying that no one ever believes him anymore and that it's almost like we don't love him anymore.  How are we supposed to believe the things that we know for certain are lies?


It took almost 10 minutes for him to finally calm down and to admit that he'd found the toy in the car.  Since he and Angel Baby had been arguing earlier, he explained that he'd given it to and come up with the story in hopes that it would make her like him again.  


It was kind of scary, though, when it first happened.  He didn't show his usual signs that he was lying.  He looked me straight in the eyes and didn't even blink, rather than looking away and getting tears in his eyes (the tears came afterward).  It was almost like he'd begun to believe his story as he was telling it.  No matter how much I tried to calm him down, he just became more and more agitated that I didn't believe his story.


When I got home that evening, I immediately got online to ask the members of the National Tourette Syndrome Association's Facebook Page if they'd had any experience with anything like this.  Many reported both lying and stealing being part of their compulsive side of their anxiety/OCD.  One said that her child would lie like that in her continued efforts to be a people-pleaser.  Again, it was related to the anxiety.  Monster Man has always been the people-pleaser type, too, so I wouldn't be surprised if his lying stemmed from similar anxiety.  


The members of the group gave me some great advice on handling it, recommending that I talk to him individually about it (rather than in front of even his siblings) so that he wouldn't get embarrassed.  The embarrassment tends to make the anxiety and the situation as a whole a lot worse.  Next time, I'll be better prepared.  

God's Special Angels

I remember talking to one of my friends many years ago, back when Monster Man was a toddler and had not yet started showing signs of having Tourette Syndrome.  My friend's son has Down Syndrome, and she was telling me how some people asked her what had happened to him - if she'd done anything wrong to have a 'child like him'.  I remember telling her that God had chosen her to raise her son because He knew she was the perfect person to take care of His special angel.  


When Monster Man started having tics, and then when he added the anxiety to the mix, she turned those words right around on me.  It's true.  God only gives the job of raising His special angels to those He knows can handle it.  There might be times that seem tougher than others, but there are so many blessings to go right along with it, and we can rest assured that God is holding us in his arms and carrying us through those tougher times.


No, the challenges of raising a child with Tourette Syndrome are not the same as the challenges of raising a child with Down Syndrome, but they are both very challenging experiences.  It is comforting to know that God is in control and that He will not give us more than we can handle.

Wednesday, March 2, 2011

Anxiety strikes again

As storms made their way through Georgia on Monday night, we found ourselves under a severe thunderstorm warning and a tornado watch.  Some areas around us got hit really hard by nasty storms that caused damage to cars, homes, etc.  Some areas were pummeled by golf ball sized hail.  Just knowing that there were storms nearby was enough to get Monster Man's anxiety working in overdrive.

Monster Man was in his room, drawing cartoons, when the first few flashes of lightning and rolls of thunder reached our area.  Evidently, even with the storm still in the distance, it was enough to make him look out his window 'just to check' because he heard a noise.  That was when he became certain that he had seen a funnel cloud swirling around in the sky across the street.  The poor boy came running down the stairs to warn me, afraid that we needed to find shelter.  I opened the front door to look outside, hoping to calm him down by showing him that there was no funnel cloud.  He was so worried about me opening the door that I had to reassure him that it was safe before he'd even let me unlock the deadbolt to open the door.

Of course, the storm was in the distance as I'd mentioned before.  We had no hail.  The wind had only picked up a very little bit, to the point that you had to really look to notice the difference.  The storm never got any closer to our house than that, either.  It was probably a few miles from us at it's closest point.  Still, just knowing that the storm was out there somewhere was enough to have Monster Man in panic mode.  Even after the storms died down, it was another hour before he was finally calm enough to be able to get ready for bed.

It must be hard on Monster Man, having to fight off so many fears like that.  He told me that he thinks his anxiety has him seeing and hearing things that aren't really there.  I love that he has a very active imagination the rest of the time, but I feel so bad for him knowing that the active imagination gets in the way of his happiness at times like this.