Friday, December 31, 2010

It's heartbreaking

Okay, I'll admit it. It's heartbreaking to see my happy-go-lucky little boy turn into the little boy with all the anxiety he has been experiencing. Monster Man's life has changed so much over the past year. While the anxiety is the worst of it for us, there are so many other changes that make my heart ache for him.

Monster Man turned 10 this year. As he's grown older, his hormones have started to change bit by bit. Maybe because of the hormones, but maybe still because of the new struggles he is facing in learning to live with his tics, he has started having horrible mood swings. It doesn't take much to make him angry these days. Some mornings, he's already yelling before he even makes it to the school bus. I know he doesn't mean to be so angry so much of the time, and he's often quick to apologize when he realizes that his temper is getting away from him, but it still saddens me to see how angry he is.

I've noticed that he seems to withdraw from us a little more than he used to, as well. Some days we have to practically beg him to come out of his room. He chooses to stay on his bed, reading a book (at least he's doing something of value with his time), rather than spending family time with us some nights. I've also noticed that he gets a spaced off look from time to time, like he's not completely there with us even when he is sitting right by us. Some days, I cry thinking of my Monster Man slipping away from us.

I know we all have many challenges ahead of us. Our faith in God will help us through.


Monster Man used to be the type of child that wasn't afraid of anything. I remember going to the bathroom one time when he was two and walking out to find him standing on top of the refrigerator. While on the swings, he always begged to be pushed higher. Danger? What danger? He didn't seem to know what the word meant.

Imagine my surprise when he started having major anxiety issues this past summer! He and Angel Baby visited my mom in the North Carolina mountains over the summer. You can't even tell you're in the mountains where she lives, but he was sure he was going to fall off the side of the mountain. When he heard about a hurricane in the Atlantic, he was sure it was going to come up the mountain after them. A couple of weeks later, he was invited to Six Flags with his best friend. He refused to go on most of the rides, afraid that the rides would come off the tracks, that he might slip out of his seat belt, that something - anything - might happen to kill him. In fact, he was so scared and was vocalizing his concerns so loudly that he ended up scaring people in line around him.

A week later, my hubby and I took the kids to the Huntsville Space and Rocket Center to see the Star Wars exhibit. Monster Man, a major Star Wars fan, would have a blast (we thought). When we arrived at the space center, he started panicking that the rockets out front would fall over on top of him. We had a hard time getting him to walk around and an even harder time convincing him to give the rides a try (interestingly, once he got on the rides he kept wanting to ride over and over again). Worst of all, he was terrified by the domed movie theater. Sitting too high had him in tears, and he still hid his face when I moved lower with him. The objects on the screen were too big for his comfort.

His anxiety hasn't just turned out to be fear about his own well-being. If Angel Baby's bus is even ten minutes late getting home, he worries that it might have gotten in an accident. If Little Man is running around, Monster Man is afraid he'll fall and get hurt. Sometimes, it seems like Monster Man is in almost a constant state of worry, and it breaks my heart.

Unfortunately, anxiety can go hand-in-hand with Tourette Syndrome. We're currently working on ways to help him calm down when his anxiety hits, including breathing exercises and a lot of patience, and his doctor has given him some medicine for when his anxiety is at its worst (though I've never remembered to have it with me at the times he's needed it thus far, so we're still not sure how well it works for him).

The evergrowing tic-list

I mentioned previously that Monster Man started out with two noticeable tics and that the list grew significantly soon after we realized what we were dealing with. Of course, he doesn't have them all at the same time. They come and go, sometimes increasing in severity while others seem to dissipate. They seem to come out of thin air, and some seem to disappear just as quickly as they developed.

Some of Monster Man's tics include:
- Forceful eye blinking
- Throat clearing
- Constant sniffing (he can even sniff and talk at the same time)
- Nose twitching
- Pulling his lips together on the sides while pushing out his bottom lip (kind of hard to explain)
- Taking 3 steps then kicking himself in the back of the leg
- Dragging his toes when wearing flip flops (he went through three pairs this summer before we finally figured out what was going on and had to make him quit wearing them so he wouldn't trip)
- When he gets half-way up or half-way down the stairs, he changes pace and dips down (we always think he's going to fall because of the loud thud it makes)
- Moving his arms in a waving motion, starting with the left hand up to his shoulder, turning his head, and then moving from his right shoulder down to his right hand (looks similar to a dance sometimes)
- Pulling up the left side of his face, almost like a half-smile that forces his eye closed

There are so many more, but these are the ones that come to mind right now. Of course, some are more complex than others. We're still working to identify what all triggers certain tics. The only real obvious ones we've discovered are the flip flops causing him to drag his toes and anxiety causing him to pull his lips together.

In the beginning

We've always known that Monster Man was different. From the time he could talk, he always did things his own way. He didn't like pizza when he was younger, concerned about the pizza sauce getting on his hands (he had no problem with other foods covering him, oddly enough). He didn't like ice cream when he was little, either, choosing instead to have warmer treats than something so cold. Now, at the age of ten, he still doesn't like having milk on his cereal since he says it changes the texture. Those are just a few of the things we noticed, all centered around food, but there were many other things that have always seemed different.

Monster Man has always had an extremely active imagination. From shortly after his second birthday until well after his fifth, he believed that he was Santa. Not just believing in Santa, but truly believing that he was the man in red himself. He wore a red sweatsuit and Santa hat nearly everywhere he went, introducing himself to kids as Santa Claus. He spent hours on end 'practicing' flying his sleigh. He asked for 'real reindeer that can fly' for Christmas. He took imagination to a whole new level, so much so in fact that we often heard comments about whether or not he was normal.

Over time, we came up for a simple answer for why he did things the way that he did. "Because he's Monster Man." We used this answer for just about everything he did. Why did he have to create crazy voices and repeat lines from movies while we watched them? Why did he insist on always wearing his socks inside out? Why did he have to have his food cut just the right way, including having his PBJ cut into four triangles? Why did he get so easily upset when he couldn't get things done just right? Why was he such a perfectionist with his school work? Why did he seem so quirky? Why does he seem like such a spazz? All these questions, and probably a thousand others, were answered the same way.

Out of all three of my children, Monster Man always seemed to be the sickest. What might be a mild cold for Angel Baby would turn out to be a major illness for Monster Man. I remember waking up one morning when he was five weeks old and finding him blue. It was just the start of many respiratory problems he has faced, especially over the course of his first eighteen months of life. During that time, he spent a total of fifteen months sick, with only a few healthy days scattered here and there between illnesses. RSV, bronchitis (three times), and pneumonia (twice) plagued the poor baby, though he rarely let them bring him down. As he got older, he still continued to get extremely sick. He fought off numerous cases of strep, scarlet fever, and ear infections. He ended up with mono in kindergarten and Lyme disease at the end of second grade. It seemed like if anyone was going to get something major, it was going to be Monster Man.

Somewhere around the time that he came down with Lyme disease, Monster Man started having problems with what we thought were allergies. He blinked a lot, really forceful blinks that looked like his eyes were really bothering him. He started clearing his throat all the time, as well. We started treating him with Claritin, hoping to help ease the symptoms he was experiencing. Angel Baby has severe allergies, so it only seemed right that the symptoms Monster Man was experiencing were related to allergies as well. Unfortunately, the more we worked to get rid of the symptoms, the worse the blinking and throat clearing got.

I finally mentioned the symptoms to the pediatrician this past January, nearly two years after the first of the symptoms began. It wasn't until then that we realized that these weren't allergy symptoms at all. Instead, they were tics. He was referred to a pediatric neurologist, though his doctor told me it didn't necessarily mean that he had Tourettes. It took us nearly 10 full months to get an appointment that stuck (the appointments kept getting rescheduled by the office), and by then Monster Man had developed many other tics. In fact, we had seen a total of almost 20 tics by the time that he was finally seen and diagnosed.

And so begins my blogging journey as we experience Monster Man's struggles and triumphs with Tourettes Syndrome.