Tone me down and break a board

I guess if there is one good thing about insomnia it at least has me writing this week. Well, writing at night on my blog, less so at work were I actually have deadlines and shit. Don't expect too much though. I don't have my glasses on so I can barely make out the letters I am typing. Add to that the pharmaceutical helper I just took and you never know what I'm going to say.

So anyone think I may have been a little over excited about Noah making a friend?

I know many of you understand why I'm excited, but I was a bit over the top the last couple days with my glee. More like I was the one that had a new BFF.

Think you know where this is going?

Yeah, NBF cancelled on Noah tonight for buddy board breaking at karate. His mom called and said he wasn't feeling well.

Yes, I know, he very well may not be feeling well. I shouldn't be reading something in to it. Except I can't quite help myself. My first thought was shit, what did Noah do to upset/scare/piss off NBF so he didn't want to come?

Or did I get too excited in front of the other mother and scare her away myself? One of my good friends did tell me the other day to be careful what I tell NBF's mom, to perhaps not be quite so open about our difficulties (wise woman that Julie).

Oh hell, who knows. Maybe he really was sick. Or maybe he got too nervous about karate and board breaking.

Anyway....

So let me tell you about board breaking! Awesomeness. Noah did it last year, but this is the first time I was able to break a board.

And I was fierce!

Behold the evidence!

I broke that sucker with my bare hand!

Noah rocked it out as well.

Here he is preparing to break the board with an axe kick (which I keep mishearing him say as an ass kick, and that makes me laugh).

Here he is focusing on the board.

A little game of what is harder, my head or the board.

Post break! Too bad mommy's camera doesn't get those speed shots.

It was fun, and I'm glad Noah let me be his buddy so I got to break my own board.

I'm taking it to work and putting it up on my office wall to remind people not to mess with me. ;)

Of friends and tics and insomnia

It's 12:15am and I'm wide awake, despite the Ambien I took an hour and a half ago.

Insomnia is fucking kicking my ass again.

Despite that, I wanted to post something good on here, since I know it has been a while.

A couple good things actually.

First, Noah's tic has subsided dramatically, especially the head movements. He still has the throat clearing (verbal tic), especially when he is doing homework or at the computer. Sometimes a day or two goes by and I don't notice them at all.

I know they could (most likely will) come back. I know new ones could manifest. I think though, that we will be ok. The shock has passed; acceptance has moved in.

But the really good thing I wanted to share, is that Noah has a friend. A real friend. Yes, I know, versus a fake friend. ha ha

Maybe I should say he has a friendship that is returned. A best friend that considers Noah his best friend as well.

I met his mom at meet the teacher night and I heard her say "I need to meet the parents of this boy Noah that NBF (Noah's best friend) keeps talking about."  So I went up to her and said "I'm Noah's mom, and all he talks about is your son."

So...blah blah blah...we set up a play date with the boys for last Sunday.

Am I the only one that gets nervous about play dates because it is as much a date between the parents as it is between the kids? I felt like I was headed out on a first date. Granted, it was to Burger King and I was in jeans and no makeup...but still. There was that awkward first conversation, made only slightly easier because we could always fall back on the "so, what's your kids diagnosis" line of conversation.

Of course, I had to keep reminding myself not to say too much lest I scare her away completely. 

Great news though, Noah and NBF had a great time. And NBF's mom and I clicked as well.

When you have kids like ours you worry beyond the typical is my kid hanging out with a good crowd worries. Since Noah is in an emotional support class he is with other kids that struggle with their behaviors and emotions. There are kids in there that I would not consider a good match for Noah, either because Noah would dominate them, or because Noah would be learning negative behaviors from them.

NBF is similar to Noah in energy and impulsiveness. He has a good heart and is kind. I could see the two of them supporting each other and it made my heart smile.

They ride the bus together and it makes me happy to see Noah get on the bus with a big smile as he sits next to NBF every morning.

NBF is coming with Noah tomorrow to karate for buddy board breaking. His mom will be there too. We are both excited to see our boys break boards.

This is the first time Noah has brought a buddy with him to any activity at karate.

Honestly, and yes I know it's probably over the top, but I am so happy about this! I feel like something big and wonderful just opened up for Noah. Something I was afraid was never going to happen.

I better die in the first wave

The thing is, I'm in a kind of grey space right now. Stress is high, coping is low. There isn't much joy** in life right now.

I actually realized this a few weeks ago, when I started thinking I would want to be taken in the first wave.

You know, the first wave of the alien attack* (or maybe the zombie attack?).

No sense making it through the first wave, or the second wave, and joining the resistance. Shit, I can barely cope with family life right now when I have power and modern conveniences and ready access to pharmaceuticals. Plus, I'm exhausted all the time. I can't imagine taking care of my family when we are hiding from aliens (or zombies), not to mention the total lack of wi-fi access.

I used to think that I'd be one of the strong ones in an emergency. I'm pretty self sufficient. I have the common sense. I can do things, especially if I'm told I can't. I may not be the most physically fit, but I could make do. Plus my extra insulation just meant I'd go longer if food was scarce. And fuck if I was going to let the aliens win. Or the zombies. Or the Republicans.

But lately, the grey is heavier. And I started thinking that if there is no joy, why would I really want to go to all that trouble? And why would I want to drag Noah through it, when it would be a world even more chaotic than he deals with now?

At least when I'm lying awake because I can't turn my thoughts off I have new topics to obsess over. Less boredom, more morbidity.

I probably should call that number my therapist gave me. I might need a bit of a pharmaceutical tweak.

 *Thanks to the TNT summer series Falling Skies for this morbid train of thought. Loved the show though, even if I won't be fighting next to Noah Wyle!

**I wrote this last night. Sometimes before I go to bed I write my best stuff. Sometimes it's the craziest. You can decide what this post is. The fact that I wrote this at all is actually making me laugh right now. So maybe I do have a bit of joy in me, even if it is twisted at the moment. I mean really, aliens and zombies? Shit, it really is the Republicans we need to be scared of.

Unless they were taken over by the aliens...

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.

 

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?

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.

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.

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.

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.

Doing the science, so you don't have to.

I was a bit of a science geek in school. I capital L-O-V-E loved MacGyver. I didn't have normal crushes on normal teen idols, oh no. Once I moved past Shawn Cassidy and Donny Osmond, it was pretty much MacGyver all the way.

And just to prove he still sets me all aquiver, I just wasted an hour at this website dedicated to the series.

Anyway...I could write an entire blog post or twelve on why I loved the guy so much (shut up! He was not just a character!). Or tell you how when a guy I was dating fixed my furnace with no more than a rubber band and a paper clip (I shit you not!) I was so turned on I wanted to throw him down on the cold, hard basement floor and have wild monkey sex with him right then and there, but I won't bore you with those silly stories.

Because really, when I sat down to write this I was going to tell you how much I loved science and how in the MNT household I am keeping that love alive and passing it on to my children. Until I got sidetracked by my lusty thoughts of MacGyver that is.

But back to science, and my children, and passing on the love, etc. etc.

I always assumed that I would be one of those moms that did science experiments with her kids. I also assumed I would be one of those moms that did all kinds of cool things in the kitchen with her kids, and did art projects, and took them to cool, educational places.

And then Noah came along and I tried all of those things and the ingredients for the science experiment were all dumped in together, the measuring spoons were thrown into the mixer while it was running, the paint ended up every where but on the paper, and he was "that kid" inside the giant heart at the Franklin Institute that wouldn't come out.

So the paint dried up, and the baking slowed down, and we stay away from giant walk-in hearts.

But, we still do science experiments! It's just that they are rarely planned or intentional. We do however learn from them.

For example, just the other day Kiel taught me that combs don't flush. They also don't really float. In fact, they will slide down far enough into the workings of the toilet that you don't really know it is there. Well, not until after your morning constitutional and you realize the toilet is plugged up, so you get the plunger and start plunging away. So you plunge and plunge, and finally things are moving again, but you can still see a little bit of blue way down just peeking out into the bottom of the bowl, with some floaters around it. You start to think that maybe Kiel tried to flush his night time pullup down and figure you are going to have to pull it out. So you try to get clever and turn the plunger around and fish it out with the handle end. But that doesn't work, and you realize if it was indeed a pullup there is no way anything would be flushing down. So you plunge some more, and you flush, and you prove to yourself that the water is flowing down again, but you still see this little bit of blue, way down deep in the bowl. And you still see some floaters, so you know it isn't all going down. Plus, you didn't hear that satisfying gurgle burp that you usually hear after a successful unclogging.

And then you realize that you have nothing left to do but plunge your hand down deep into the toilet and pull it out yourself. Don't worry, I promptly cut my hand off at the wrist so no worries if you ever do meet me in person, just shake my left hand. And out came my big blue comb. The comb I use every morning to untangle my wet hair. The comb that now has shit stuck between some of the tines. The comb that was picked up yesterday morning by the trash guys.

So remember, combs don't flush. The combination of comb and shit doesn't float. And no matter how many times you flush that comb is still going to have poop between the tines.

Awesome stuff right?

Now, just the week before Noah helped me conduct another science experiment. This one involved one of those sandwich cracker packs, the pocket of his shorts, and the washing machine.

Maybe it was his hint that he wanted me to make meatloaf, because those crackers came out perfectly crushed. The consistency and uniformity of the crumbs was truly perfection.

Unfortunately, the crumbs didn't stay in the wrapping they started out in. They didn't even stay in the pocket. Oh no, they left a nice uniform coating of wet cracker crumbs on all the clothes and the inside of the washer and then the dryer.

I'm all for multi-tasking and economy of motion, but take my word for it, crush your crackers by hand. Doing it in the washer and dryer is highly inefficient for both effort and output.


And there you have it. I did the science so you don't have to.

You are welcome.