Tuesday, January 31, 2012

Rage, Negative Thoughts, and a Great Idea

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

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

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

Saturday, January 14, 2012

Allowing Imagination to Become His Therapy

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

                Monster Man’s imagination has always stood out to those who spend time with him.  From the time that he could talk, it was obvious to us that he was one-of-a-kind.  At home, he was always living in a world of make believe.  He wore costumes as often as he could get away with it, he repeated movie lines and acted out scenes from all his favorite movies, and came up with stories that constantly kept us entertained.  When he started preschool, his teachers often commented on his incredible stories and drawings, pointing out how advanced his imagination was compared to his peers.  His elaborate imagination has followed him through all the years, remaining with him even as he started middle school earlier this year.
                Monster Man's imagination has been a big part of all of his favorite activities.  He has always loved to read, getting wrapped up in books for hours on end.  He loves to become a part of the world that lives inside the pages of the books, putting himself into the scenes and interacting with the characters in his mind.  Sometimes, he enjoys acting out the scenes and pretending he is his favorite characters, getting his brother and sister to act out the stories with him.  Sometimes, he likes to write out his own new ending to the stories, building on where the stories left off.  Most of all, though, he loves to draw out the scenes the way that he sees them in his head.
                Drawing has become a form of therapy for Monster Man.  It allows him to live in his own fantasy land, making an escape from the pressures he faces on a daily basis.  Whenever he is feeling overwhelmed, when his tics are at their worst, or when he’s having a bad day, he will sit at the table with some paper and his tools of choice – pens or pencils, crayons or markers, even paints or oil pastels – and sets to work drawing and coloring his cares away.

Tuesday, January 10, 2012

Monster Man is Santa Claus

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

                Monster Man was always so different from our other two kids, as well as from all my friends’ kids.  When he was five weeks old, I woke up to find him blue.  He’d developed what turned out to be the first of a series of respiratory infections.  By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.  
                Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do.  He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between.  He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys.  The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car.  Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme.   We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.
                For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening.  That was when his personality really started to blossom.  The boy has been full of character from that moment on!  He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination.  From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus.  He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents.  For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to.  When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him. 
                In the months preceding Monster Man's diagnosis, I joined the National Tourette Syndrome Association Facebook page.  It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art.  Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before.  Just about all use their art as a form of therapy.  I guess this would be where Monster Man's overactive imagination comes in handy, especially when he’s drawing…

Saturday, January 7, 2012

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!