I know I've said it before, but sick kids and Tourette Syndrome do not go together very well. Monster Man currently has the same cold that Angel Baby and Little Man are just recovering from. While Little Man was cranky, stuffy, and had a scratchy throat, his symptoms were very mild. His did develop an ear infection and a slight case of conjunctivitis as well. Angel Baby was crankier than Little Man, a little sleepier than usual, and she ended up losing her voice. While she seemed to feel bad, her symptoms still seem pretty mild to what Monster Man is going through.
Monster Man seemed to be doing better over the weekend, but apparently got re-exposed to the germs, developed something new, or the virus is just trying hard to reappear for him. He stayed home on Thursday, going to the doctor with his brother and sister, but his symptoms seemed pretty mild. I actually thought we might make it through without his pattern of having the illness become a major ordeal for him. Instead, he came home today feeling so miserable that he crashed on the couch and slept for over an hour when he got out of school. When he woke up, he had a fever and his throat was hurting so bad he could barely swallow. He cried for over 20 minutes, until his ibuprofen finally kicked in and gave him some relief.
Whenever he gets sick like this, he gets panicky, too. Monster Man was so sure this afternoon that something was horribly wrong with him, and that he was going to have to go to the hospital. Every time that he is sick, we go through the same process of reassuring him that he will be okay.
Poor Monster Man is having a hard time with this virus, as usual. I wish that just one time he could get a cold that came and went without knocking him off of his feet.
While laughter is the best medicine, I have a hard time finding the humor in the rage that Monster Man seems to experience quite often. He'll go through several great days, with little anxiety and very few tics. Then he gets hit with days where he seems angry at the world. He isn't feeling well today, which is adding to the anger.
Some days, his anger is aimed more at his brother and sister. Most days, though, it seems like his anger is aimed more at me. I've heard that because I am his "comfort zone" (the person he feels most comfortable around, who he can feel free to tic around and who he gets the most comfort from when he's experiencing anxiety), he feels more comfortable expressing his anger to me. Sometimes I wish that he wasn't so comfortable expressing that anger around me because the attitude always comes out that he can't stand me. Yes, he's even told me he hates me (which is completely unacceptable) during these times of rage. Hearing the tone of his voice, the yelling, the spite, and the choices of words while he's so angry is not just upsetting, it's hurtful.
After he calms down, he always apologizes and comes to me for hugs, and then he starts to get clingy and seems to have developed another stage of separation anxiety, and he's the complete opposite of the child he was only a few minutes earlier. It's amazing how fast his attitude shifts.
I've always heard the term "Laughter is the best medicine". For Monster Man, this is definitely the case. He always prefers to find the humor in the worst of situations, whenever possible, rather than to dwell on the negatives in a situation. He has also been known to use the humor to educate others about Tourette Syndrome.
I have talked to several people that want to keep Tourette Syndrome a serious thing. They cannot stand for the slightest joke to be cracked, for inappropriate comments to be made, etc. Monster Man, on the other hand, laughs along with the comments and then takes the opportunity to say things like "That's not how everyone with TS is" or "It's not really like that". He finds, as do I, that there are times that humor can be an important tool in educating and spreading the word about Tourette Syndrome.
Humor can be used to explain what life with TS is like, to ease his self-consciousness when his tics are at their worst in public, and to help overcome some of his anxiety issues. No, it's not appropriate to make fun of someone with Tourettes, but - as Monster Man has learned - you can take a negative situation (if you're put in that situation) and turn it into something positive.
The past week has been going really well for Monster Man. His anxiety level is a lot lower than it has been in previous weeks, which means that his tics have been pretty mild. Last week, he picked up a new tic that, thankfully, only lasted a few days. He was making random 'farting' sounds with his mouth whenever he was starting to get nervous. It would help ease the nerves, and it would end up making him laugh sometimes afterward, but even he was getting annoyed by it after a while because he didn't want people thinking he was being rude. I think that the lack of anxiety has been a blessing for him this week so that he could have a break from some of the tics that he gets most annoyed with.
That is the thing about Tourette Syndrome. The tics come and go like that. New ones pop up randomly. They seem to go away just as fast as they appear. Sometimes they reappear later down the road. Sometimes there are tics that we see for a short time and have yet to see reappear. Each day is new experience, and we never know what the day will hold.
I think that Monster Man benefited from the several months that passed between the time that we first started to suspect Tourette Syndrome and the time that he was actually diagnosed. It gave him a lot of time to learn about TS and to get comfortable with the diagnosis. By the time that the doctor looked at me and said "He does have Tourette Syndrome", Monster Man and I were both able to just reply with "okay." There was no shock, no upset. In fact, we were more relieved. We were relieved to have an official diagnosis, to know that we were for sure dealing with what we'd thought we were dealing with. We were prepared, and we could face this challenge head-on.
Over the past few days, we've been discussing the medical research study that Monster Man may have the opportunity to become involved in. We talked about the benefits, as well as the risks. Believe it or not, Monster Man actually expressed that he was concerned that he'd lose his tics. He has told us, on more than one occasion, that the tics are part of what makes him special. He likes being different, having something that sets him apart from the other kids. His biggest concern, as is ours, is the level of anxiety he deals with on pretty much a daily basis. He wants something that will help take the anxiety away from him, and he's okay if the medication limits the number of tics, but he wants to keep on tic-ing.
I'm really impressed with how well Monster Man has faced this challenge!
So we went to find out about the medical research study, and so far it sounds like it might be a good thing. We went ahead and had the initial screening done yesterday, checking to make sure he qualifies. We're supposed to hear something back in about a week to get everything set up for Monster Man to start this study.
We're still researching a little before we make a definite decision, and that (of course) also depends on if he qualifies or not. We are asking around about the medicine being used in the study, trying to find out who has had experience using it, what kinds of side effects they have had, etc. We really want to make sure that this is the best thing for Monster Man. We don't want to head into this seeing free medication and a little extra cash, but instead want to know if this is the best solution for him. We want him to be happy, and we want him to stay healthy. We don't want to put our child at risk, and we're hoping to find a solution that puts his best interest first.
Like I said, we are really leaning toward giving it a try. The people that I've talked to with experience with this medication have all, for the most part, been positive. No one has complained of the side effects, and only one has said that they didn't really notice a difference. The feedback I've received thus far has been very helpful. The information I've been given, combined with prayer, will help me to make the best decision for my son.
Since the kids' current insurance will not cover Tourette Syndrome, I have been looking for an alternative to help us get Monster Man the help that he needs. I recently ran across a medical research study that is being done that will give him the medication he needs, the therapy he needs, and will pay us for time and travel. I'm not completely convinced that I want to go the medication route with him, but we go tomorrow to discuss the study further and to find out if he qualifies. I know we will be asked a list of questions, but I am going in with a list of my own. I want to make sure that the medication is not going to end up causing him further problem, and that this is really the best solution for him.
At first, I was very relieved to find that we might possibly have found a solution to the problems with getting him treatment. However, I am really starting to get nervous about the whole thing. Is this really what is best for him? Is this going to harm him in any way? Is this going to help him at least get back a portion of the happiness that he had before, when he wasn't plagued by anxiety? I am praying to God that I will know what is the best answer this tomorrow.
I know that I mentioned previously that I felt that no one was to blame for Monster Man having Tourette Syndrome, and that I actually felt like he was chosen by God to have it. Instead of feeling that it is a burden, I feel that it is part of what makes Monster Man who he is, that makes him have such a detailed imagination that he can put himself into other characters (like Santa Claus) and not only think about that character as a whole, but go into detail about what being that character entails. The same imagination that let him become Santa is the same attention to detail that allows him to draw out his future race car. His imagination comes alive not only in play but also in his drawings and in his writing. Perhaps the amount of detail he puts into everything stems directly from his TS.
Why do I say that? If you read Jonah Lehrer's article on The Advantages of Tourette Syndrome, you will read that studies are showing that those with TS are more precise in detail, making fewer errors on challenges in eye-movement experiments and more accurately timing the length of time in which objects appear on a screen, than their peers without TS. Perhaps there is an advantage to TS, after all. It doesn't hinder those with TS, making it impossible to reach their goals. Instead, it makes them better at what they do. It adds to their talents. It, as I've said before, makes them who they are.
I've spent a lot of time on the National Tourette Syndrome Association Facebook Page recently, and I have found that many of the members there feel the same way. While the challenges that go along with TS really stink, they can still see the gift that they were given.
There seems to me that there is no greater evil to someone with Tourette Syndrome than people who don't understand. This is especially true when those that don't understand are in your own family. I have been working hard to get my husband to understand what Monster Man is going through, but it isn't an easy task. I figured that he would be the one person who would be most likely to understand the challenges that Monster Man is faced with; after all, it's my hubby who has epilepsy and who has struggled with ADD. Instead, though, I listen to him fuss at Monster Man for the things that my sweet boy cannot control. Some of his tics can get frustrating, I'll admit, but it is heartbreaking to hear my son get fussed at for his tics, and it is even more heartbreaking to hear Monster Man's reaction. You can hear how upset he gets, and you can certainly see it on his face.
I want to take him under my protective wings and shield him from all harm, but I know that this will only make matters worse in the long run. I know that I must teach Monster Man how to stand up for himself, how to face those that are not understanding and to teach them rather than to run away.
I've had several people suggest that we watch Front of the Class, a Hallmark Special Presentation about a real life teacher with TS. I have tried to find this for rent, but have been unsuccessful. It has aired a few times in recent months, but we do not have cable to be able to watch it while it is on. I am planning to purchase my own copy soon so that I can use it not only to educate my family, but to also share with others who might want to know more about Tourette Syndrome.
The question came up on the National Tourette Syndrome Association Facebook page yesterday as to what all celebrities have been diagnosed with TS. While the answers given didn't include all of them, it was quite interesting to find out who does have TS, who did have TS, and who is speculated to have TS.
One that immediately stuck out to me is NASCAR driver Steve Wallace. Son of driver Rusty Wallace, Steve is one of the younger drivers in NASCAR at this time. I've read somewhere that his uncle, NASCAR driver Kenny Wallace, has also stated that he was diagnosed. This is of particular interest to me, as well as to Monster Man, since Monster Man has (as I've mentioned in a previous post) talked a lot about driving for NASCAR someday. I would love for him to be able to meet these two drivers and to find out that it is still possible to make his dream come true!
Soccer players David Beckham and Tim Howard, x-treme motocross racer Jeremy "Twitch" Stenberg, minor league baseball players Jim Eisenreich and Mike Johnston, and retired pro golfer Calvin Peete are amongst the list of pro-athletes that been diagnosed with Tourette Syndrome.
There are also many comedians, musicians, and actors that make up the list of celebrities with TS. We were only a little surprised to see that Dan Aykroyd and Howie Mandel were both on the list. Robin Williams is speculated to have TS, though some say that his is a 'self-imposed' kind of Tourette Syndrome. There is also so research that suggests that Mozart might have had Tourette Syndrome, as well.
When you see the list of celebrities that have faced TS head on, overcoming the daily challenges to do what they love best, it gives a better idea of just how possible it is to reach your dreams even when faced with Tourette Syndrome.
Monster Man has always been a bit clingy to me. The clingy-ness comes in spurts, getting progressively worse, then better, then worse again. He's always loved to be by my side when he isn't playing a video game, reading a book, or drawing. If I'm sitting by him when he's playing a video game, there are even times when he practically sits on top of me. We just figured he was a cuddly kind of boy, one who loved to hug and to spend time with me. There are times that the clinging seems to resemble separation anxiety, but we can usually work past it when it gets that bad. He also likes to say "I love you" a lot more than the other kids. Again, we just figured it was part of how loving he is. It never occurred to us that this isn't normal, that this might be part of something bigger.
I learned yesterday that this is actually part of his Tourette Syndrome. It seems to be more of the OCD side, if I'm reading right. It appears that many kids with TS seem to fear that something might happen to their parents, to the point that some call their parents, text them, etc multiple times a day just to say "I love you". Though he doesn't call me or text me, he does seem to feel the need to say it multiple times a day, even multiple times in an hour. He can be in one room and I'll be in another, and he'll yell "Mommy" from where he is. As soon as I ask what he needs, he'll just answer with "I love you." To me, there seems to be many worse problems to have than to have a child that loves you, but it does tend to be a problem when the clingy-ness gets to be a little disruptive to my classwork, his homework, and getting other things done.
Another part of his OCD and TS that I hadn't realized was part of the big picture was how often he apologizes. It broke my heart before to realize how much he was apologizing, since I thought that he must constantly think he is doing wrong. I thought that he might be a little depressed thinking that he was this person that needed to apologize for everything. He apologizes for every little thing sometimes, including apologizing for apologizing. Sometimes he apologizes for his "I love you"s because he thinks it's an inconvenience (I've told him that, while there are times that I need him to be quiet - like when I'm taking a test for school - I don't mind him saying "I love you", and that there is never a need to apologize for loving anyone). This need to apologize also seems to come in spurts, but I never realized that the need to apologize was part of his TS and OCD until I read about this yesterday, right along with the information on the clinging and the need to say "I love you".
I must say that I am a bit relieved to find out that his need to apologize is all part of what he is already dealing with. It is much easier to think about than the depression that I had previously thought might be to blame.
It's hard to know what behaviors are related to Monster Man's Tourrette Syndrome and what behaviors he can control. We try not to use his TS as an excuse for everything, but there are times that we don't know if it's to blame or not. Like volume control, for example. This morning, Monster Man's voice keeps getting progressively louder as he speaks, and it's really starting to annoy my husband. One minute, Monster Man is practically whispering, and then a few minutes later it sounds like he is almost yelling. He says he can't control it, that's he's not meaning to be loud, but we can't really be sure since he's using the "I can't help it" excuse a lot lately.
Monster Man can't seem to control the impulse to ask questions, either. We'll be watching a movie and a sudden question comes out about the character or the plot, and he just blurts it before he has time to even think about it. We're wondering if this is what is happening at school, too, since he gets notes home from time to time about needing to control his talking.
I have a lot of questions I would really like to talk to a doctor about, but we're unable to take Monster Man for treatment related to TS due to his current insurance. Hopefully we'll all have better insurance soon so that we can get him the therapy, etc that he needs and so that we can get answers to questions like impulsive talking, volume control, and what may be things he is using TS as an excuse for.
I've been thinking back a little, trying to remember when Monster Man really started showing signs of his TS and OCD. Though the majority of the signs didn't show themselves until the past couple of years, I have to wonder if maybe the anxiety started much earlier than I realized.
Monster Man didn't learn how to swim until this past summer. I didn't think too much of it, though I did notice that his troubles were due to fear once he realized that he was actually swimming without support. Before this summer, he'd make it about three feet before his feet would drop below the water and he would start to sink. I remember when he was younger, even when he was tall enough to touch in the shallow end, he'd start crying that he was drowning if I wasn't holding on to him. I thought he was just nervous and overreacting, and I kept reassuring him; we even quit going to the pool for quite some time just to give him a break from trying to teach him to swim. Now that I look back at it, knowing what he is experiencing with his anxiety/OCD, I have to wonder if this was an early sign of things to come.
Sometimes I listen to the things that Monster Man talks about being when he grows up, and it almost makes me want to cry. So many of the things he mentions involve the things that he has recently become so scared of.
For years, he has talked about being a racecar driver. He wants to be a part of Nascar, driving right alongside some of his favorite drivers. He has made plans of how to get the money for his car, who to turn to for sponsorship, even what colors he wants his car to be. He has drawn pictures of his dream car, posting them all over his room. He has created his own version of a Nascar magazine for kids. I would love to see him meet this dream that he has put so much effort into, but then I think back to the fact that he's scared of the possibility of accidents, that he doesn't even like to sit on the driver's side of the car anymore, and it makes me wonder how he will ever be able to reach this dream.
He has also started taking an interest in outer space. He often talks about becoming an astronaut. He draws pictures of space shuttles sometimes, but he doesn't put as much effort into this dream as he does into his dream of becoming a Nascar driver. Still, though, I can't help but wonder about how he can achieve this goal. He's terrified of heights, busting into tears at the thought of being in a high space (though we can usually help him become more comfortable if we allow him to take time to adjust and if we stay patient with him. Even the thought of getting on an airplane scares him, so how could he handle getting into a space shuttle? And what about his reaction at the space center, when he was scared the rockets would fall over on top of him and crush him. He didn't even want to go near them, so how is he supposed to get into a shuttle? He talks about saving up to send himself to Space Camp, but I just don't know if I'd be able to let him go knowing how much these things scare him.
I want so badly to support Monster Man with his dreams. I've always wanted to encourage my children and to help them reach the goals that they hope to achieve. It's so hard to support Monster Man with all these questions in my mind, though. All I can do is pray for his fears to be relieved.
You never really know when a new tic or a new fear will start up. It seems like they come out of nowhere. It's weird how something that you have done just about every day of your life can suddenly turn into something that makes you nervous or at least uncomfortable.
Earlier today, I took Angel Baby, Monster Man, and Little Man to the store with me. Little Man sat in his usual seat directly behind me and Angel Baby sat in the other captain's seat beside him. Monster Man chose to sit on the rear bench seat, directly behind Little Man. I was driving down the road, less than five minutes from the house, when Monster Man suddenly informed me that he needed to change seats. I had to stop to let him move over directly behind Angel Baby. His reason for the switch, as told in a very nervous tone, was that he was "uncomfortable" and that sitting on that side of the van is "kind of freaky". Evidently, he suddenly realized that the cars on the other side of the road were closer to him than he thought, and he suddenly became afraid that one might cross over the yellow line and hit the van, injuring him. Once we got to the store, he also informed me that he was "kind of scared" when crossing the parking lot, afraid someone might come flying into the parking lot and hit one of us.
I can't even begin to imagine what it must be like to be in his shoes, constantly afraid that something bad might happen.
There are times that my husband and I question where Monster Man got his Tourettes, and if either of us is to blame. Not necessarily that we could control it, just we wonder if we are the one that passed down the gene that gave him the problems he is dealing with. Sometimes, I even wonder if it came from both of us.
My husband has epilepsy. From our research, it appears that there is a link between epilepsy and TS. In many cases, children with TS have a parent with either epilepsy or TS, and somewhere along the lines a relative has one or the other even if it isn't a parent. Of course, as would be expected, this link bothers my husband. We've always prayed that our children wouldn't have epilepsy, that they wouldn't have to live in fear of the possibility of a seizure. When we first discovered that Monster Man could have TS, we were actually relieved to know that it wasn't epilepsy, since some of the tics were twitching of the entire left side of his face.
Of course, there are issues on my side of the family that are often found to go along with TS. I have a sensory integration disorder, though mine has never been fully diagnosed (I've had a doctor tell me that is what it is, but it wasn't my own doctor). I can stand certain textures or certain sounds. I get physically ill sometimes just thinking about the sound of fingernails scratching jean-clad legs, and the thought of touching rough fabric sends a chill down my spine. There are times when I have a hard time getting dressed right after a shower just because I don't want to touch the fabric. My family used to think that I was just being picky and strange, though I've since discovered that I get this from my grandmother. Anxiety, as I've mentioned previously, also tends to go hand-in-hand with TS, and my family has had its share of problems with anxiety.
Like I said, we've spent a lot of time contemplating which one of us is to blame, or if we are both to blame, for the challenges that Monster Man is facing. The truth is, though, no one is to blame. As I explained to Monster Man tonight why children with different disabilities are considered 'special', it's not that they were given a burden. Instead, they were chosen by God to have this gift - this one thing that sets them apart from others and makes them who they are. They can look at the challenges they face as something to be upset about, or they can come to understand that maybe, just maybe, they wouldn't be the wonderful people they are inside if they didn't have TS.
From what I've been reading about Tourette Syndrome through both the TSA website and from the National Tourette Syndrome Association facebook page, I've discovered that Monster Man's anxiety issues aren't just anxiety. In fact, they are labeled as a form of OCD. With TS, people who have obsessive compulsive disorder tend to dwell on fear of disasters. It's more a fear of the uncontrollable, rather than a fear of what could happen if you don't do things a certain way (which is the more common form of OCD in patients without TS). This really explains a lot about his anxiety. I mentioned previously about his fear of a hurricane coming up the mountain and his fear about roller coasters coming off the tracks or displayed rockets falling over on top of him. From what I've been reading, this is actually more OCD than just general anxiety.
Monster Man's fears seem to be a big problem sometimes. They seemed to develop overnight, and they've really hit him hard. I was really worried at first that he was alone in these fears, and that something more was really wrong. It is a relief to me to know that this is just a part of his TS, and that so many others with TS are going through the same thing.
Sometimes knowing that Monster Man has Tourette Syndrome makes it hard for me to know if certain behaviors are something that he can control or if they are tics. For about a month now, every time Monster Man gets excited while playing a video game or watching a movie, he'll yell "woo-ooo" (like woohoo, without the h). It's always the same noise, always the same tone, and it's always when he is excited. At first, we were telling him to quiet down since he often did this with someone sitting next to him, and it is loud enough that it hurts our ears when we are in close proximity to him. In fact, it seems loud just being in the same room with him when he does this. Now we think it might be one of his many tics, though. It doesn't seem like he can control it, and now he's even starting to get a little upset when he does it himself.
The worst thing about this particular (possible) tic is that it bothers him more than the others. Yes, it does bother us at times, but it really seems to aggravate him even more. He is starting to realize that he can't always control his own body, and it upsets him to feel so helpless. It's going to take a lot of time and work to help him learn how to control this tic and the others he is already experiencing. Hopefully we will soon be able to get him the help he needs to learn how to take back some control of his body.
I've often been told that I have a large amount of patience when it comes to children. I didn't know just how much patience one person could have until recently. With all that Monster Man is going through, I've had to learn to be 100 times more patient than I already was before.
The biggest test of my patience has come from Monster Man's anxiety issues. We visited Tallulah Gorge a couple of months ago, and it took almost 45 minutes to get Monster Man to feel comfortable enough to take even a quick look over the lookout into the gorge below. What we'd intended as a 20 minute stop turned into almost an hour as we waited for his nerves to calm. When the worst of his fears hit, we have to choose our battles wisely with him. Is it really going to hurt to give in and let him back away from his fears from time to time? Or should we encourage him to face his fears to help him overcome them? We've learned that each situation is different, and we have to decide whether to help him face his fears or to allow him to turn away.
As the clock struck midnight tonight, signaling the start of 2011, the air outside our windows was filled with the familiar sound of fireworks. Our neighbor's were welcoming the new year in style, celebrating the end of the old and the start of the new. Inside our house was a different story, however. I'd managed to get the kids all to bed around 11:00, and I thought they were all asleep. Of course, Monster Man made his way into my bedroom almost immediately after the first firework exploded. Once again, his anxiety had kicked in and he was extremely nervous. I could tell this by the way he was positioning his mouth, a tic that is triggered by stress for him. He didn't want to admit it, telling me that he just couldn't sleep, but I could see a little fear in his eyes as well.
This time, I was prepared for the situation. I've sometimes been known to let him bring a blanket and pillow into my room and sleep on my floor, and there have been times when I've found him doing the same in Angel Baby's bedroom. Tonight, however, I had a different plan. He received a LeapFrog Crammer for Christmas, a handheld learning device that pairs practice quizzes and flashcards with an MP3 player to help make learning fun. Instead of sleeping with someone else (though Little Man's presence in their room has recently been enough to help Monster Man feel a little safer), I suggested he put his ear phones in and listen to his MP3 player until the fireworks have stopped. For once, he actually went with my suggestion on the first try. Maybe this patience thing is finally helping us both learn how to handle these situations.
