I only cry when he can't see me

Monday. Twelve days ago. Noah came home from camp and I noticed he was jerking his head. It was bizarre. His head moved one way and his eyes the other.

I asked him if he was OK. If he felt OK.

He said he was fine. And asked me why.

Noah had karate class that afternoon. During his class I worked with one of the instructors in the back room. It has a window that looks out onto the main studio floor. We both watched Noah as I told her what I had noticed just an hour earlier. She worked in mental health for many years. She understands what we are going through with Noah.

His head jerked. It bobbed. It jerked again.

He practiced with his class. He did his self defense. He led kata.

His head jerked. Left. Right. Left, and left again. Forward. Backward.

His meds? his instructor asked me.

I don't know. We are tapering him off the drug that would most concern me if it was a drug reaction.

It's a tic, I say.

Somehow, I just know.
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The next day we see The New Psychiatrist (TNP). Because I spent most of the session talking with her, she didn't see Noah for long. She said it could be a tic, they are common in kids with Noah's complex problems. Or it could be a learned behavior. Is there anyone at camp that moves their head like this? Is he copying them?

I don't think so. It doesn't feel like it is something he is controlling, I tell her. 

Talk to the camp. Find out. We'll watch it.
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Wednesday. Karate promotion. Noah is center floor amongst his classmates. Perfect spot for pictures. Perfect view for us as he demonstrates all he learned this cycle and why he deserves his brown belt. His advanced belt! We are so proud!

Noah raised his hand every time a volunteer was called for. He smiled the entire time.

He kicked, he chopped. He performed his kata.

And his head jerked, and jerked, and jerked. It was unlike anything I have ever experienced. I felt like I was watching a movie. A documentary perhaps.

At times his head moved so forcefully, so intensely that the rest of his body had to move with it or he would have fallen down.

When it was time to remove his old green belt and put on his new brown belt, parents were called to the floor to help. Rich went to him.

I can't stop my head from moving, Noah said.

Oh my beautiful boy. What is happening to you?
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I cry when Noah can't see me. I can't let him know how much this concerns me.

It is worse when he is in public. If I hug him when we are out I feel his head moving against me. It is not as obvious at home. Just a jerk here and there. Perhaps ten minutes with no movement. Perhaps 15.

He drifts off to sleep as I hold him and I feel his head moving on the pillow.

I know he is not mimicking someone. I know he can not control this. I don't know why it is happening.
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Another appointment with TNP. Now she is concerned.

It could be a medication reaction. It could be he has Tourette Syndrome. It could be the medication he was on was masking the symptoms, and now that we are tapering him off it is showing.

More appointments to come. More questions to ask.

How much more does this child have to deal with? How much more can go wrong in his brain?

It has taken me twelve days to be able to talk about this without crying.

I will be strong for Noah. I follow his lead. He has only mentioned it twice.

He says it is annoying. He said his brain is making him do it. He can't stop it.

He goes back to his Lego's.
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I only cry when he can't see me.

I will not let him know how much this upsets me. I will not make it worse for him.

My tears will stop. I will pass through this cycle of grief. I will mourn yet again, and move on.

I will look for answers. I will learn to accept what is.

I will love him even more.