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.

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!