The Side No One Sees

We've had a rough few weeks with the Tourette's. Munchkin #3's tics are still continuous and there doesn't seem to be anything that will work to stop – or even slow – them. We did get him to the TS doctor, which is a two-hour trip one-way. It takes up most of one day to get there, see the doctor, and then come home. Not something we undertake lightly, but we felt it was important for the doctor to see him out-of-control like this. Normally when we go, things are pretty good.

The TS doctor was concerned. I think he finally saw what we've been telling him about these episodes, so the trip was worthwhile. He had initially switched Munchkin #3 to a different medication about two weeks ago, so when we saw him in the office, he doubled the dose of the new stuff. It has done little to nothing so far. He did mention we might have to triple it or even go higher. That makes me nervous. I don't want to drug my child; I just want to give him his life back.

Speaking of lives, this is the side of the syndrome most people don't see. Now, if you have a family member with a visible problem or disability, you will know exactly what I'm talking about. In the stores, you get the stares. You get the snide comments. You get the rude remarks. People walk away from you, and they are angry. Well, you know what? I'm angry too. I try to be nice; try to understand most people don't know about this thing called Tourette's … but, do you have to be rude and nasty? Just ASK why he’s doing that … politely. We’ll be happy to educate you.

Yesterday, I had him in the grocery store with me. Now, you have to understand his main tic right now is making a farting sound with his mouth. He also squeaks in a high pitch, jerks his arms, and about every fourth tic, he shuffles his feet. It's pretty obvious something is wrong. First, we encountered an older man who said to me, “Sounds like he is in love with farting.” I smiled; wasn't up to trying to educate this one. Next, a woman stared at him and followed us around the store. Aisle after aisle, she just kept up right behind us – staring. Next, another man said, “Doesn't he ever shut up?” I told him he can't, this is involuntary. He nodded and walked away quickly.

Last, but not least, we were in line paying for the groceries. My wonderful son was bagging everything up, even though his tics were making the simple task much more difficult. But, he wanted to help me. The stalking lady walked past him and said, “You are a rude little boy!” If I had been near her, I would have stuck my foot out to trip her. I mean, what the…? Can’t they see he’s shaking too? Can’t they understand NO ONE would keep that up for that long by choice? I looked at my son and saw the tears forming in his eyes and my heart just broke. He said, “Mom, did you hear what she just said?” I told him, “Yes, and she is just ignorant. If she had any brains at all, she would have politely asked why you were doing it, and then we could have told her.” He smiled. I smiled. Inside, we both were angry and hurt.

The sad part is, we get this kind of behavior from so-called adults everywhere we go now.

I'm Back!

Well, it's certainly been a while since I posted! Sorry about that, our family had several crisis in a row and blogging took a back seat for a while.

First, my mother fell and broke her hip. Since she is nearly 80 years old, this was a concern to us all. She had many complications from the fall and endured six surgeries. The last was only a week ago and we're hoping she doesn't need any more. Add to that an infection that wouldn't heal and a scare with her heart, and it becomes clear why we've been so worried about her. As I write this, she has finally been discharged after 5 weeks from the hospital and is currently in a rehab facility. I think she is on the road to recovery at long last.

Since I was spending so much time at the hospital with my mother, then coming home and trying to do all my normal activities as well, I managed to run myself down. I caught that awful flu bug going around and wound up in the hospital for a week myself. Recovering slowly, but each day is better than the last, so I'm not complaining.

Now, all of the above would be tough on any family, but we're not just any family. We're a Tourette's family. Simply put, added stress equals added symptoms and behaviors. Munchkin #3 really lost it with both grandma and mom in the hospital. He had nightly meltdowns and let me tell you, nothing breaks my heart more than to hear him cry over the phone that he needs me home and I'm stuck in the hospital. My husband did the best he could, but this is a kid who craves routine and mom not home at night is definitely not the routine. So, he cried. He didn't sleep. He was miserable. His tics increased until they were nearly non-stop, and he missed a lot of school.

Meanwhile, Munchkin #2 handled things in a different manner. His response to the stress was to get into trouble. Constant trouble, mind you. He defied teachers and his father. He got detentions at school. He became sullen and moody. Yes, he's days away from being 13, so some of this is normal. But, some isn't. I'm worried about #2, to be honest. Things are settling down and he's still sullen and moody. He just wants to be alone and sleep. Since he's shorter than most kids his age, I know he gets bullied at school. We've tried to stop it, but it still continues. In my heart, I think he's depressed and I'm going to look into counseling for him. I hate to see any of my kids hurting and I feel he is. Maybe a counselor can get him to talk a bit because he's sure not talking to us anymore.

Munchkin #1 actually did fairly well over the last month and a half, all things considered. She was moderately helpful with her brothers, and actually did her chores while I was in the hospital. Doesn't seem like much, but normally getting her to do any chore is ... well, a chore. Don't get me wrong - at 14, she thinks she knows everything there is to know and actually came out and told us that she knows much better than her "lame" parents. Okay, she didn't use the word "lame" but you could tell in the roll of the eyes it was on the tip of her tongue. Basically, she drives us crazy - which I suppose is her job as head teenager of the family. But, again, all things considered, she's handled the extra stress on the family fairly well.

Things will be happening with Munchkin #3 over the next few days. His tics never subsided once I came home and at this point, school is pretty much out of the question. All he is learning is how cruel the other kids can be - nothing much else. We're making an unscheduled trip to see the Tourette's doctor to try and address some of this. We're also considering home schooling for a while. I'm no teacher, but I know the school setting is not right for him at this point. We have to do something. I'll update the blog as we make these decisions for him.

In the interim, stay healthy out there. I don't know about other areas, but here people are dropping like flies from that flu virus. All the hospitals are full as well. So, take your vitamins and wash your hands frequently. If you do get it, take care of yourself.

More to come.

Elvis in Rapture, or How to Survive Church Services with Kids

We have raised the kids to be fairly religious throughout their lives. We're blessed with a parish that accepts children in services, even when they get a bit loud or inappropriate. Our priest actively encourages parent's to bring children as well, so we've always felt very comfortable. We have, however, had our share of mishaps in church - some humorous, some mortifying. In retrospect, they are all now humorous, but I do wonder how we got through some of them.

There was the time the youngest munchkin was acting up around the age of 3, so his father took him by the hand and whispered, "I'm taking you to the car!" Three-year-olds have amazingly loud and clear voices in such situations, I've found. To our horror, this small, sweet, angelic child shouted out, "GOOD! It was boring in here anyway!" Certain members of the congregation still snicker when they see this child. He is also the one that found the bingo machine at the tender age of 2. Two-year-olds have an amazing knack for finding out how to remove the lids of things, and then finding the power switch. Stories still float around about the bingo balls that were flying everywhere and the small boy trying to catch them and put them back in, sensing his own impending doom. I won't even go into the potty training years on church grounds. Suffice to say the child was never modest and the priest had never had small children around much. Use your imagination from there.

The older boy had his moments as well. There was the time, when he was all of 4, that he became convinced the priest was actually Jesus. No amount of explaining was going to deter him. Finally, after a long talk, he said, "So Jesus is in the church still, right?" We agreed and told him that Jesus was just invisible. He digested this for two days and we thought we had finally gotten him over this weird obsession. Sunday came. We are experienced parents, we really should have known better. As the service began, the priest led the procession down the center aisle towards the alter. My precious 4-year-old stood up on the pew and screamed out, "See mom? I TOLD you we could see Jesus!" as he pointed to the priest. More snickers from the congregation. We're known in that church.

The kids, when they became of age, all wanted to be alter servers. Munchkin #1 began the trend and she has been doing it for the better part of six years now. Her brother joined her the next year when he became eligible. He's never been as comfortable as she is, but he's found the things he likes to do and does them. He's not the type to branch out to new things, as she is. Different styles for different kids.

Meanwhile, the youngest sat in the pews and anxiously awaited his turn to be up on the alter. By the time he was approaching the right age though, he had already been diagnosed with the Tourette's and his repertoire of tics was quite impressive - and disruptive. We worried. We're parent's; that's our job. I spoke to the priest, who basically didn't even want to hear my concerns. He told me if any child in the entire congregation, regardless of any other issues whatsoever, wanted to be a server, he would be happy to have them. He's a wonderful man and true to his word, he trained the youngest three times longer than anyone else until the munchkin was comfortable, and then he brought him up during a service. He's been serving for two years now and loves it. This is one of the only places he does not fight with his brother and sister - he tells us God is watching, so he must be on his best behavior. I tell God to keep watching!

His tics don't go away on the alter, but most people have learned to ignore them. Sometimes it's more difficult, such as when he's making rather rude sounds during a reading, or shaking his arms when carrying the jug of wine. We still worry - it's still our job. But today, things were going fairly smoothly. I had taken the oldest and the youngest to church by myself as munchkin #2 and hubby were at an all day wrestling tournament.

Munchkin #3 was having few tics here and there, but nothing overly noticeable and nothing too disruptive. Then, they hit. I realized he had been trying to hold them back because when he does, they will explode out of him after a while. This was an explosion. The entire congregation was singing "Gloria," and I began to hear the odd snicker. I know that sound, I have "mother's ears" that focus in on it instantly. Looking up to the back of the alter, I can see my youngest son in the throws of some pretty severe physical tics. Of course, given their nature, I'm probably the only one who realized they were indeed tics. As we sang out "Gloria" there he was, raising his arms up in the air repeatedly, head going back over and over, mouth opening, and body shaking. He looked like either the rapture had taken hold, or he was channeling the spirit of Elvis. Or, some weird combination of the two. I looked over at my daughter, who was actively snickering. I looked at the priest. He had wisely closed his eyes to avoid laughing. Meanwhile, Elvis in rapture continued on. I wanted to crawl under the pew, or laugh hysterically - I wasn't sure which. Instead, I lowered my eyes and sang, willing us all to just get through the song.

We did get through it, and his tics waned as the energy began to get used up in him. I mouthed to not hold them back and he nodded. The rest of the service I could see that he still had tics, but they were more manageable. The service ended and I let out a breath I didn't even know I was holding. One more mass under our belts and the spirit of Elvis seemed to be behaving.

After the mass, I had to wait for the kids to take off their robes, etc. People came up to me and told me what lovely children I have. No one mentioned Elvis or rapture, only that it was so nice to see them serving God, and so nice to see the older one helping the younger throughout. This, my friends, is what being a Christian is all about. Overlooking the imperfections we all have and seeing the positive. We are very lucky.

Troubles at School

Well, munchkin #3 strikes again. My "welcome" to the new week was a call from the principal saying he stole some pens and pencils from his special ed teacher. He loves this teacher, I can't imagine what he was thinking. Or, that he was thinking at all! The principal stressed that he told the truth when confronted, so I guess that is something. I personally hate lying, but I do understand kids do it. I'm glad maybe the years of stressing the importance of telling the truth seemed to have sunk in.

We asked him why he did it and he replied, "Because I wanted them." This is a 10-year-old, not a kid in kindergarten. He knows better. The principal said he is not acting like himself at school and we've noticed some of the same behaviors at home. He has no impulse control at all. He's more defiant; more aggressive. I don't know what this is - could puberty be starting so soon? Or is this something to do with the medication we switched him to back in November? Or, something else entirely? Sometimes it's all a guessing game.

He did get tears in his eyes when we pushed him on why he would do this. He mentioned kids teasing him at school and insisted his tics are worse at school than at home. Guess I need to call his teacher in the morning and verify that. Sometimes he gets an exaggerated idea in his head and it's real to him, but not to the rest of us. However, it's entirely possible he is getting more nervous at school due to the teasing, which will increase the tics. It can be a vicious circle. Any strong emotions - even positive ones - will make them worse.

I am so glad we see the TS doc next week. He's going to get an earful!

Back To School And Routine

It's been a busy week. The kids went back to school on Wednesday and we always hold our breaths with Munchkin #3 (youngest). There was a time when he was younger that he would have a real problem going back after a vacation like this. Thankfully, the last two years he has not had that reaction - he runs happily back into school and the routine he loves so much. This time was the same, but we still always have that worry in the back of our heads. When you have a kid like this, you know things can turn on a dime. You know that everything can be stable going to bed one night and by the next morning, things have fallen apart. It's happened so many times in the past that you learn to not trust the good times too much. It is just so easy for it all to fall apart.

His last battle with the tics was like this. He had enjoyed an almost tic-free summer - we heard or saw one or two every now and again. This phase lasted so long that we began to think maybe his TS was improving, even though we had been told to expect it to get worse as he approaches puberty. Then he woke up one day about a month into the school year with constant, non-stop tics. The night before, he had been fine and almost tic-free. Makes you wonder what exactly happened, but it is simply the nature of the disorder.

Most people have the view that the tics are either under voluntary control (they are NOT) and annoying (okay, they are that). When you have a child with near constant tics, going out is an adventure unto itself. Even relatives are annoyed and embarrassed by the child's bizarre behaviors. Imagine if you will taking your son out to a restaurant. Should be a simple, normal, and even routine thing by the time the child is 10, right? Now imagine that child is squeaking, spitting, grimacing, yelling out nonsensical words, throwing his arms up in the air, and shaking his entire body - non-stop. He puts food on his fork and jerks his arms, sending the food flying. Food goes in his mouth, but he has to spit at just that moment, so out it comes again. Then he begins to get upset because people are looking, staring, making rude comments. The more upset he gets, the worse the tics get.

I think you can see my point. Going ANYWHERE is almost impossible. School became a nightmare, and life became one as well. His body hurt from doing these motions over and over again, his throat hurt from all the vocal tics. The only time he got a break was when he was sound asleep, but try just falling asleep doing all of the above. Thankfully, he sees a specialist who changed his medication and got them under better control. We still see more than we did over the summer, but he's back to living a normal life again at least. Well, normal as it gets, anyway.

Back to school though. I got off the track a bit! They all went back on Wednesday and of course the two boys were sick (and stayed home) by Friday. Can't win - germs seem to follow my three around and attack every other day. Yep, I know every parent feels this way!

Anyway, on Thursday morning, I finally realized something. Getting the youngest (Munchkin #3) up and dressed for school is always a challenge. Well, he didn't want to wake up and was running late as a consequence. So there I am telling him to hurry, he's going to be late, put your shoes on, etc. and I look at him - he's going slower and slower. The more I say to hurry, the longer he has to take to do even the simplest of things. My frustration levels, needless to say, were sky high and here's this kid just glaring at me. Hmmm. Normal kid passive/aggressive behavior for being hurried when he doesn't want to be? I'm beginning to think so. He has been very resistant lately to anyone telling him to do things he doesn't want to do. Now, all kids resist that, but he does it by whining and complaining loudly, and just not listening to anyone else. He does this endlessly until he either gets his own way or finally gives up.

I'm beginning to see a pattern here, but I haven't quite figured it out or what to do about it. He's always been a difficult child to discipline as he doesn't react the way other kids do. When he was younger, I'd put him in timeout and he'd refuse to come out of it. Or, he'd have a meltdown. So, you never know with this kid. But, I am starting to see that this latest bit is his way of protesting things he doesn't like. Don't get me wrong - I'd MUCH rather have this than hitting or meltdowns. But, I'm wondering how to get past it, especially things like the slowing down when you're late thing! I will need to give this more thought.