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.