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!).

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.

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.

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).

Return of the "woo-oo"

We have come to the point where we don't even notice most of Monster Man's tics anymore.  There is one tic that really sticks out, though.  It had gone away for a while, but it returned earlier this week.  It's his loudest tic, the one that is most noticeable to others.  Sometimes, the tic almost seems like a normal reaction, as it usually happens when he is watching a movie or playing video games and gets excited, but there are other times when he is excited that this tic shows up.

With this particular tic, we've noticed (as I already stated) that it seems to happen when he is excited.  He lets out a loud "Woo-oo".  Doesn't seem like much, but there are times when he is watching something particularly exciting and he keeps repeating it every couple of minutes.  It's fine at home or at hockey games, but wouldn't be fine at a movie theater or another public performance where it would become a distraction to those around us.  It's sad to think that we have to limit him from certain activities like that just so that his tics don't become bothersome since he hasn't learned to control them very well yet.

For now, he's more comfortable in situations where he can be excited and not have to worry.  I guess it will be that way for a while, until this tics disappears again or until he finds a way to control it.

A School Performance

Monster Man was in a performance at school yesterday, and it gave me a chance to realize something I had never noticed before. When he was up on stage, singing with the other students, he didn't have his usual eye blinking or throat clearing (or sniffing) tics. He was actually able to control them up on the stage, which really amazed me with how much he struggles to control them at other times.

He's always been a bit of a goof in front of a crowd. During VBS performances at other churches, Monster Man would be the one child rocking out on air guitar throughout the songs. When other kids are standing still singing, or even just swaying a little, Monster Man is the one that has to dance. Sure enough, while he wasn't tic-ing on stage last night, he was emphasizing words of the song with a swing of his arm or he was tilting his head from side to side to the music. It occurred to me last night that maybe, just maybe, these little antics are his way of controlling the tics. Most importantly, though - They kept a smile on his face!

I was so proud of Monster Man last night, watching him and knowing how hard he was working on the inside to keep his tics under control. Sometimes we take things like that for granted.