Tuesday, August 30, 2011

First vacuums, now knives?

Rich and I have been trading off staying home with Noah the past two weeks since camp is over and school starts this week.

One day last week Rich went upstairs to do something; he said he was only up there about ten minutes or so. He came downstairs and Noah was outside playing.

And then he noticed all the butter/table knives were missing from the utensil drawer.  We have slowly been losing spoons over the last year or so, but I recently solved that mystery when I saw Noah throw out his yogurt container with the spoon still in it.

But for butter knives to suddenly go missing? Well, that smelled of Noah, and the smell wasn't good.

Turns out Noah had them outside with him. We still don't know why. He doesn't know why. A little target practice perhaps? A "let's see how far I can throw this?"

Rich and Noah went on a knife hunt in the back yard and found most of them.

He didn't tell me until a couple days after it happened. I guess he didn't want to give me one more thing to worry about.

But seriously dude. I don't think that is something you try and pretend didn't happen.Yeah, it is one more thing for me to over analyze and worry about. But since I'm already worrying about so much, what is one more ? Think of it as adding a little more variety to my worries.


Sunday, August 28, 2011

When vacuum's come alive

Noah is afraid of the vacuum cleaner. One day a couple weeks ago he told me the vacuum scared him.

Now he's never liked the noise of the vacuum, and he makes sure it doesn't get too close to him when it is on, but he has never shown actual fear. In fact, over the past couple of months he has helped me vacuum and earned some money doing it. He was proud of himself that he could do it and do a good job.

So to hear him suddenly say he is afraid of it was surprising.

At first I thought he was using it as an excuse to not have to help me clean his room. I wasn't very sympathetic, as you can imagine.

But then he started talking about how it looked like it was smiling at him, and asked me to turn it around so the "face" part was towards the wall. He refused to walk past it if he thought he had to get too close to it.

When I left it in his room that day I was cleaning it, he freaked out.

It turns out he had a dream and it tried to eat him. Then a few days later he had a dream and it ate Kiel.

I can understand how that could turn into an irrational fear. At eight he still has magical thinking, right?

But still, he was almost humanizing it as he spoke of the vacuum. Like it was alive and was really going to come after him.

The fear seems to have eased up a bit. I saw him go up to it and pat it and say "good vacuum cleaner" the other day. Today he was fine with me using it with him right next to him.

I realize I over think everything about Noah. I remind myself of that whenever I start worrying about something he has done.

I'm having a hard time convincing myself that this is just normal eight year old behavior though. And I really don't think he is playing me; if he is, the kid is fucking brilliant.

Frankly, it scares me more than a little. Is this psychotic thinking? A tear in his link with reality? A glimpse at what is to come?


Sunday, August 14, 2011

Awful, awful, awful, awful...and then something incredible happens...and then awful, awful, awful, awful...

 I watched The Backup Plan with Jennifer Lopez tonight and it is fucking hysterical.

This bit though made me stop and say "wow, yeah, exactly."

It's awful, awful, awful and then something incredible happens. And then awful, awful, awful, awful, awful...and something incredible happens.

Well, I don't know what it is like in a normal family with normal kids, but that is what it is like with Noah most of the time.

Yesterday Noah's camp had their end of the year camp show. I wasn't able to go but Rich was there. Noah was awesome. In fact, after it was over Rich called me to tell me about it and he was all choked up about it. It was really sweet.

One of the songs his group did was Michael Jackson's Beat It. Noah had a "dance" solo towards the end. Here is a little clip of it. He's in all black with the gold vest. Please note the large white glove he is wearing. ;)

The video is about 23 seconds. It makes me smile and laugh. This is the incredible.

And then the awful, awful, awful...today at karate I saw him taking money out of my purse. I told him to put it back. He grabbed it anyway and went running out of the karate studio. In front of everyone in the middle of my class.

That is what he is doing now. If he doesn't like what we are telling him to do, or if he is being reprimanded or directed to do something he doesn't want to do, he takes off.

I refuse to run after him. It would be like trying to catch a puppy. I won't catch him and it will just be more fun for him.

So instead I feel absolutely ineffective because at the moment there is not a thing I can do until he comes back.

Awful, awful, awful...

And then we came home and he helped me pick up and vacuum, and it was a little bit of the incredible again.


Wednesday, August 10, 2011

The Boy of summer

Despite the tone of the last two posts, we really have had a good summer. Actually, I should say Noah has had a good summer, so we all have had a good summer.

Noah is at a different summer day camp than he was at the last two years. This one has two parts - a special needs part and a "typical" kids part. His group is a bit of a hybrid between the two sides. The staff is well trained, and mostly special ed teachers or in school for special ed. Many of the counselors have siblings with special needs.

Noah loves it! He comes home every day and can't stop talking about how much fun he had. We had a goal for him that he would learn to swim, and he met that goal in week five. Yeah Noah! They have sheep, goats, chickens, dogs, therapy horses, a donkey, gardens, plus all the typical summer camp activities.

They facilitate inclusion and he has had a couple "buddies" from the "typical" side that ask to play with Noah frequently.

I will admit I was nervous about sending him to this camp. I knew the special needs side was highly special needs - mostly low-functioning autism and mental retardation. I wasn't sure how Noah was going to handle that. Well, he has handled it wonderfully. We have had some conversations throughout the summer about how everyone is different, and that some people have brains that work differently and that they need extra help. It's been a good way to work on acceptance and kindness.

The week before he started camp I found out the group he was in was going to range from 8yo to 13yo. Noah was the baby and whether that was a good thing or a bad thing remained to be seen.

Noah has had a perfect summer there. No issues with aggression. A few reminders to keep his feet on the ground and that he is not a mountain goat climbing all over the picnic tables, but basically that is it.

What a difference from the last two summers when I worried every time the phone rang that it was going to be camp calling with a problem and had a constant fear that he would be asked not to return.

For the first time in three years I don't want summer to end! I wasn't sure I would ever say that again.

But in true MNT fashion, I am now worried about school starting and how he is going to handle the transition to a new teacher and the increased demands of third grade work. I had hoped to have more information to give the school about how Noah's brain worked and what he would need to learn, but instead we took a step back from that and are giving TNP time to get to know Noah so she can help guide us.

I'm still concerned about the tic, but I'm no longer crying when I see him do it. He commented today that he couldn't make it stop and it was annoying him. I asked him if it happened all the time and he said no. He was fairly matter of fact about it.

We talk with TNP tomorrow so I hope to have a better idea of our plan for the next few weeks as we head back to school.

Thanks to everyone for all of your support! Your kind and encouraging words mean so much to me! I am very lucky to have such wonderful readers.


Friday, August 05, 2011

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.

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.
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?
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.
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.
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.


Tuesday, August 02, 2011

I need to write. I need it to soothe my soul.

I need to write. I need it to soothe my soul.

Yet what I need to write about is so difficult, so emotional, so painful for me, that I find myself doing everything but writing.

We have been seeing a new psychiatrist since mid-June. She is horrified by the amount of medication Noah is on. She wants to try and pull him off everything so she can see what his baseline is. She says it will be a long process; six months or more. He may end up hospitalized at some point. And she acknowledges that we may not be able to get him off everything.

Rich and I agree with her. We have been questioning the medications for a long time. Yet we trusted the previous psychiatrist. We needed to trust him. We had no reason not to trust him.

Now we need to trust the new psychiatrist (TNP).

TNP makes me uncomfortable sometimes. It was a rocky start between us. I was convinced after the first appointment that she doesn't like me and that she thinks I am the reason Noah is so messed up. I don't think she believes that now.

Now I think she has had a chance to see just how bad things are with Noah. How disconnected he can be. How disorganized his thinking is. How worried we are about him. How much we love him.

She indicated the disorganized thinking could be an indication of future psychosis.Or not.

Today she was concerned about how disconnected he seemed. That sometimes he just isn't "there."

I wanted to be a smart ass and say "uh, yeah, why do you think we are here?" But I didn't. I just nodded my head and said "yes, I know."

She told me last week that Noah is the extreme of the extreme of the outliers. He isn't a single diagnosis, or even two. He's multiple. And we don't even know all of them yet. Or what may spring up as he grows older.

My child is complex. My child is difficult. My child's future is unknown.

I haven't told you everything though. I can't tonight. I've cried enough for one day. Maybe tomorrow.