The Time Between

I wrote this shortly after Noah came home from the hospital. I was letting it sit overnight before I posted it. Obviously I never came back to it. 

To those of you who have commented recently asking how we are doing, and to all my other readers, thank you! Thank you for caring about us! Thank you for pushing me to update! 

This post is about how things were. I will post again about how things are. They are good! Right now things are good! I thought about just posting that, and deleting this all together, but I think it's important to know what the in between was.

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If it isn't obvious to you by now, let me just put it out there.

I only come here anymore when I need to wallow. Roll around in all my drama. Like a pig in shit you might say.

There is no time to come here with the good stuff. Hell, I have half a dozen partially written posts waiting for me to finish that have nothing to do with the good stuff.

There is good stuff. There is. Kiel is full of the good stuff. And Noah has plenty of it too.

I get overwhelmed by the crap we are dealing with, and then as I start to write it down here, I feel like kicking myself in the teeth for all the damn self pity that surfaces.

For cripes sake woman. You are the mom. You don't get to fall to pieces.

Noah is doing differently since his hospitalization. I wouldn't say he is doing better however. He's full of energy and emotion, but it comes out in overwhelming ways. He's too fast. His body, his thoughts. He's defiant yet loving. Stubborn and reactive yet more connected than he has been in months.

He constantly picks on Kiel, and as I understand from his teacher, a couple of the more vulnerable kids at school.

For whatever reason, he has decided that he's going to act crazy. I guess he figures if that is what people expect from him he's going to give it to them.  

That's how I roll, he says.

He's loud, obnoxious, a step beyond just silly. He won't stop when asked. He won't lower his voice. He says really strange things.

I think it's an act. Most of it is an act. I think. I don't always know. I hope it is an act.

Last week he told me he can't stop thinking about killing me. He was helping me put away dishes and when he was doing the silverware he handed me a sharp knife and said "get this scary thing away from me." Then a few minutes later he threw himself into me for a hug, his head pressed into my chest, almost in tears. He tells me he doesn't understand why he can't stop thinking about killing me because he loves me so much and he doesn't want me to die. This was not an act.

We are on top of it. I spoke with the psychiatrist and he thinks it may be because of a recent medication addition. It freaked me out, still does actually, but I talked to him today and he said he only thought that the one day, but I probably shouldn't let him have any knives.

Last week I offended the psychologist. Well, it seemed like he was offended. Perhaps it was just irritation. I questioned him on why we were continuing to do a behavior program that wasn't working. I asked the same questions I have previously about applying behavioral modification to a child with brain damage, when the current info says it doesn't work. When our history says it doesn't work. I told Rich I can't waste my time on this when it isn't getting us anywhere. Tomorrow I will officially end our professional relationship.

I interviewed a behavior specialist (BSC) last week for Noah. I got the impression that most families don't interview prior to them taking on a case. I guess they aren't used to working with someone that has been playing this game for so long. I asked her about her education and experience. I asked about her knowledge of trauma and trauma based therapy. I asked about neuro-behavioral theory and what she knew about the brain when exposed to alcohol and when it doesn't receive appropriate care as a newborn and infant.

I found out today I scared her away.  I am not surprised.

I'm tired of spending months working with someone that doesn't understand what we are dealing with, and tries to apply traditional methods to my very non-traditional child, despite all my explanations of what we have tried in the past and what didn't work before.


Mostly though, I'm just tired. Very, very tired. Bone tired. Hard to get off the couch tired. Napping almost every day after work tired. Struggling to get even the basics around the house done tired. The stress is not just affecting my mind now, it's affecting my health.

Stigma is an Asshole

Oh boy do I have some stories I need to tell. Soon. Hopefully, I will have time soon.

Tonight I want to talk about stigma. Last week was Mental Illness Awareness Week. I didn't know about it though until mid-way through the week. Probably because I've been so busy the last two weeks dealing with my sons mental illness.

Is it considered irony, or just coincidence, that tonight I write about stigma, when two weeks ago I was afraid to post what was happening to us on Facebook because of the stigma?

Last week in the midst of Noah's mania and my worry that I wasn't doing enough to get him help, I knew I needed to blog. I gave it quite a bit of thought however. I decided it was okay to blog about it, but I wouldn't post it on Facebook. That way only my regular readers would see it.

I mean, you aren't really supposed to post things that aren't flowers and rainbows and unicorns or links to idiotic conservative sound bites on Facebook, right? I've received crap from family (extended) a few times about what I have shared about Noah. Because I keep it real and I guess that makes them uncomfortable.

So yes, I wasn't going to talk about his mania on Facebook. Even though that's not how I typically share our life.

I like to keep our life real. I'm not comfortable hiding the truth. Life is a balance of good and bad, so why wouldn't I share both parts?

But last week was more truth than I was sure it was socially acceptable to share.

Sure, if you are taking your kid to the ER for a broken arm or stitches, you can share away, and you'll get all kinds of comments offering prayer and healing thoughts, and concern. I mean you can relate to that right? What parent hasn't had to take their child to the ER at least once.

People don't really know what to say when you say you are calling the mental health crisis line or taking your child to the crazy people ER emergency psychiatrist. Most people can't relate to that. (I'm glad that's the case actually, I wouldn't wish this on any child or adult.)

I think I've discussed this before, and I'm not saying it again out of the same bitterness I once spoke of it (I've worked hard to move past that part of my life.),

When a child has cancer, or is born with life threatening physical defect or illness, friends and family tend to rally round. Offers of help come from all directions. Maybe someone organizes a fund raiser, or sets up a schedule to deliver meals, or help with child care. They do this because it is all too easy to imagine the same horrible thing happening to your own child. It's a visceral reaction. You can't help but put yourself in the shoes of that parent. And you give thanks to who or what you believe in, that it isn't your child.

But when mental illness strikes a family, it's uncomfortable. No one really knows what to say. Or you receive the offers of prayer and kind thoughts initially, but the expectation is that you won't bring it up again. It's too uncomfortable. Too messy. If it isn't happening to your child you can't relate. It scares you because you don't understand it. You don't want your children around it, even though you know it isn't contagious.

If only people could understand that mental illness is a disease of the brain in the same way cancer, diabetes, arthritis, and heart disease are diseases of the body. The only difference is that in many cases those diseases of the body can be cured, the diseases of the brain can be treated, but you don't necessarily cure bipolar disorder, depression, or anxiety. You hope you manage it.

Everything that is going on with Noah is in his brain. Not just the bipolar disorder.

So stigma.

Stigma isolates.
Stigma hides.
Stigma prevents some from getting care.
Stigma is an asshole.

So help remove the asshole.
Remove the stigma!

If your friend has a mental illness, be a shoulder for them. Give them a hug. Acknowledge their illness. Let them talk if they want to, don't belittle their illness. Offer them help in more concrete ways as well, help them catch up with laundry, or pick up their house, take them a meal. When you are fighting to control your own brain it doesn't leave much energy to do the normal day to day activities like house keeping. Take their kids for a couple hours so they can have some quiet time.

If you have a friend with a child with a mental illness do the same thing. But also consider how it is affecting their other children if they have them. Consider how exhausted that parent might be from fighting to get help for their child while parenting their child who very well could be quite difficult to raise. Take them a meal occasionally, or take the child out for a couple hours. (Noah would be thrilled to have someone take him out to shoot hoops or kick the soccer ball around. He holds it together better with other people, because he feels less safe to fall apart with them.) Or offer to babysit so the parents can go out. Too many marriages of parents with children of special needs fail. (Something like 85%. Rich and I aren't immune to the lousy stats either.)

When you have a child with an illness (physical or mental) it's a rough road. I don't need to tell anyone that. What makes it harder though is feeling like you have to hide one but not the other.

Stop the stigma. 

 

This was last week. It's not over.

Since the incident at soccer Noah has become increasingly fast. Not fast like "wow, watch that kid run" fast, but "wow, this kid is manic" fast. Or in other words, Noah's been riding the wackadoodle express, and frankly, it doesn't look like he's headed for a station any time soon.

Typically, Noah holds himself together at school fairly well. He's able to do that because of his awesome teacher and all of the supports he has in place. He has rough days here and there, but for the most part his behavior is acceptable.

This week he hasn't been able settle at school at all. He's all over the place, talking fast, racing through his work, not able to sit still, and very argumentative.

When Noah's teacher says he had a rough day I believe him. When he says Noah is wild or a mess. I get concerned. Especially when what I'm seeing at home is the same thing.

Monday we had an intake visit with a new therapist. In the past Noah has barely interacted with doctors and therapists. Monday he wouldn't stop talking. He also wouldn't stop moving. In this 8 x 8 office he was all over the place. The couch, me, under the therapists desk, hanging upside down over the couch, jumping on the couch. You name it, if he could do it in that little room he did. He was so happy though, and kind of silly in a fun way. It was exhausting, but I couldn't really get mad at him because it was so different from his typical melt downs.

Tuesday he was like that as well, but he was more irritable and argumentative. He refused to come inside after playing and kept running from the front door to the back door. It was a little like chasing a puppy, except that I don't chase. And pork chops don't work as bait.

Wednesday his teacher emailed me saying he was concerned and that Noah again hadn't settled all day. I knew we had to do something, but I wasn't sure what. I emailed his neurologist and was told to take him to the ER. If I had any concerns that they weren't going to be able to handle Noah's psych needs before, I know it now.

Unfortunately, we are in between psychiatrists right now. We were asked to leave the last one (that's a blog post just waiting to be written) and can't get in with the new one until November. In the meantime we have been seeing a neurologist. I thought we would be OK in this "in between" time, but obviously I was wrong.

I paced my office Wednesday trying to figure out what to do. Do we take him to the ER? Am I ready for him to be hospitalized? NO. I'm not. He's bad right now, but I don't think we are there yet.

So I called our counties child mental health hotline and spoke with a crisis worker. We discussed options. An hour later she was at our house. We sat on our back deck and she talked with Noah. He paced back and forth but he did have a conversation with her. In the end we decided to take him for an emergency psych evaluation the next morning.

That was yesterday. I wasn't sure what to expect. We were seeing a psychiatrist I knew nothing about. I never even Googled the guy.

The doc was great. He really picked up on all of what was going on with Noah. Of course Noah made it pretty easy for him. Again he was all over the office. He was more like a two year old than a ten year old.

We have adjusted his medications and are hopeful. He wasn't manic last night, which is the first time in five days I've seen him settled.

I wrote this last Friday. I didn't get a chance to finish writing it until tonight. A lot has happened since then.


 

Yesterday I wrote about Noah slipping into mania and that we restarted his mood stabilizers. 

What I haven't written about is why he wasn't on them.

You may recall we are working with a new psychiatrist (TNP) who came very well recommended. 

She spent the summer getting to know Noah. She has also been trying to get Noah off some of his medications. It didn't go very well, and at the point when the tic surfaced we were concerned it was a withdrawal reaction. That and the slide back into some of his more negative behaviors had us agreeing that we needed to stop and let him stabilize again.

Then TNP suggested we look into a research trial at the National Institutes of Health, which would allow Noah to be in an inpatient facility and be taken off all of his medications so she could see what Noah was like unmedicated, since it had been several years since he wasn't on anything.

There was a trial that seemed like it would fit Noah, and would result in his being taken off all meds, intensive imaging and computer studies being done, and then restabilized on meds that are part of the study.

We started to seriously consider it as TNP was very persuasive with her opinion that Noah needed inpatient treatment before he was going to be able to get stabilized. Since it is almost impossible to get a child like Noah into a truly good facility for the time he would need at a place we could afford, the NIH seemed perfect. 

One on one nursing to child ratio. Only 5 kids on the unit. Personal tutor so he wouldn't miss school. Music therapy, art therapy, sports every day.

The big sticking point though was that it is in Bethesda, and they would only pay for us to visit every other weekend. There was no way I was going to send Noah off like that and not be there to see him every day. The plan was that I would find a way to stay there while he was inpatient. I could work remotely during the day, and spend the afternoon/evening with Noah. 

That was the only way I could imagine doing it. TNP didn't think that was a good idea. She felt I should be home with Kiel and visiting Noah every other weekend would be fine. She felt RIch and I needed the respite and time to just parent Kiel and give him some normalcy. 

I didn't necessarily disagree with TNP, but I still couldn't imagine just leaving my 8 yo child in a hospital by himself.

So, after several phone calls with various people in the department, and then contact with TNP, the head psychiatrist there called to speak with us.

After reviewing all the information he told me that Noah would not be a good match for the study; not that he didn't fit the study based on his symptoms, but because it is a cohort study so the healthy cohort would need to fit his non-mood disorder disorders. And that, would be near to impossible. So essentially, Noah is too fucked up for the NIH. 

Honestly, it was a relief when they told me. I was upset too of course, but I was almost convinced this was what he needed. I was relieved because now I didn't have to make what was feeling like the most difficult decision I had ever faced. 

In talking with the psychiatrist at NIH I asked him what he might do with Noah's case, knowing that we want to get him off meds, or at least minimize as much as possible. He recommended that we stop the lithium. He was part of a study that compared lithium to placebo and kids like Noah, and it showed absolutely no difference between the two.

So, based on that TNP and I decided to try and take Noah off his lithium. He took a half dose for two weeks and did fine. Then we stopped it completely. Within days I could see him escalating. His behavior at school was worse. His behavior at home was worse. He was moving and talking faster. He was having more melt downs, and being more aggresive towards Kiel.

At one week post stopping it completely TNP wasn't convinced that was the reason his behaviors were changing. She said it could be coincidental. At week two when she saw him in his office and saw the mania, she agreed that he needed to restart the lithium and that this confirms in her mind that Noah does indeed have a mood disorder.

He restarted the lithium the night before he had the manic episode at school last week.

My World: when SEPTA takes you home to mania

Last week I was working with a client in Philly. I got up early and caught the train to the city. For some reason it reminded me of this book.

specifically this page:

Except, I'm definitely not Daddy's kitty.*

But still, it makes me feel all grown up and shit, like I'm play acting. Which is kind of crazy considering I have very grownup responsibilities and I'm not play acting with those.

So yes, I was in the city all week working with a client in Chinatown. And if you know me you know that meant I had some good lunches while I was there! We had Japanese one day, Burmese one day, and Malaysian one day. Yumm!!

The whole week working there was great, if tiring. I enjoyed the people working on the project for us and we really clicked. The project itself was super interesting and I learned a lot.

The city part of the week was a nice balance to the home part of the week where Noah was rapidly spiraling into mania.

Unfortunately, the two met up when I received a call from the school nurse on Wednesday while I was waiting in the train station to catch the train home.

The call was to tell me that Noah was racing: body, mind and mouth. The teachers were concerned so they brought him to the nurse to be checked out. By then he was speaking nonsense to them. Real words, but they made no sense in the context of the conversation.

I wasn't able to hear well since I was underground, and I knew my train would be there any second. All I knew was Noah was decompensating and that it was freaking the school out. And I was an hour train ride and then another 15 minute car ride away from Noah. 

Fortunately, I was able to get a hold of Noah's behavior specialist who immediately headed over to the school. While I was on the train I was able to get a hold of the psychiatrist and make sure we were on the same page if I got to the school and he was truly psychotic. Her response was along the lines of "you'll know if he needs to go to the hospital. If he isn't making sense that is not good." 

The rest of the train ride, besides finding myself unconsciously pushing on the seat in front of me like I could make the train move faster, was spent running through all the possible scenarios depending on what I found when I got to Noah. 

I arrived at his school about 15 minutes before the end of the day. He was still manic, but he was making sense. He couldn't stop his body from moving, and couldn't stop talking, but he wasn't as bad as he had been. He did not appear to have crossed that line into psychosis, thankfully.

I took him home and managed to get him to go to karate for a class. The instructors worked him hard, but even trying to tire him out he was still racing. But, he was slightly more regulated.

He's back on his mood stabilizer now, and doing better.

*not really sure what that even means.

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.

Breaking

Tonight my heart is breaking for Noah. It feels like the demons in his head are winning. I don't know what else to do to help him fight them. Nothing is helping right now.

I caught him walking out of the house with a table knife in his pocket. He doesn't know why he had it, just that he felt like he needed it. There is no sense in it. We were on our way to meet Rich and Kiel for dinner.

Asking him to remove the knife and other objects in his pocket triggered a temper tantrum. Telling him we were not going to go out to dinner because he wasn't able to listen and follow directions resulted in a full out rage.

I videoed about a minute of it, and he is like a crazed animal. It's so frightening. For him, for me.

The psychiatrist called mid rage so he got to hear the screaming and banging over the phone. More changes to his medication. He is on lithium now. I never thought we would reach that point, and definitely not so soon.

He's asleep now and should be good until morning, although he has nightmares most nights.  I hope I can sleep.

I don't believe in god or hell. But tonight I think I believe in demons, because I don't know what else could be tormenting him like this.

My poor little boy.

A Recipe for a Pissed Off Mom

Take weeks of trying to get Noah off one med and onto another one so he's not really controlled on anything yet and is riding a thin line of mania mixed with mean and nasty.

And then add in a good dose of Mommy and her fucking hormones because apparently my normal level of craziness isn't enough, so we had to add in perimenopause.

Then throw in a pinch of Noah deciding to take two packs of gum from the store yesterday via his pocket, and then lie to us about it when Rich found it.

Mix in a good dose of two boys waking up three times between them during the night.

And let it slow simmer on a rainy Saturday when Rich is at work and all the boys do is fight, wrestle, and say NO to me.

And there you have it! A big pot of Bitch Ass Mommy is not Taking Any Shit.

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You might say I'm struggling with the whole therapeutic parenting bit the last few days.

All that over a cookie?

Yesterday while on our way to Noah's vision therapy appointment I had to pull off to the side of the road.

Because of a cookie. A cookie I wouldn't give Noah, even though he was starving! and needed! that cookie.*

So Noah had a temper tantrum. Like a two year-old, but in an eight year-old body. A screaming, trash talking, spitting and throwing, kicking my seat temper tantrum. While I was driving.

And I thought "fuck this shit" and I pulled over and sat there with my hazard lights on, while Noah continued to freak the fuck out. And I sat there checking my email on my phone and half hoping/half fearing that the police were going to pull up behind me.

Eventually he calmed down and we drove home. No police. I have no idea if it made an impact on him or not. I do know he will be cleaning up the spit in the back seat after school tomorrow.

When we got home Noah went to spend some time in his room. I ate the cookie. It was a good cookie!

*There was a cookie, and I did refuse to give it to him because between picking him up from school and him seeing there was a cookie, I realized he had lied to me about cleaning something out of the car the night before.

Updated worries

So help me Noah is going to school tomorrow if I have to sit next to him in the class room and poke him all day long to keep him awake.

He missed four more days of school last week. He made it on Monday, but then woke up with a fever again on Tuesday and was home the rest of the week.

I was trying to remember how many days he missed the week before, but that was two weeks ago peoples and I've slipped a few shots of tequila in my OJ tonight. I just know it was too freaking many.

We repeated his blood work last week and to my relief his white blood cell count was elevated, which is consistent with an infection and makes sense! And, even more of a relief his platelet count was normal! 

His WBC was probably low two weeks ago from a viral infection, and is elevated now because of a different infection. Just bad luck I guess. The platelet count though I can't figure out. If it was due to the Depakote I would expect it would still be low as his dose hasn't decreased that much yet. 

I think I'm going to ask for a repeat level in a couple weeks. Making Noah endure another needle stick is worth my peace of mind, right? Right?

I feel like I am in negotiations with Noah's psychiatrist to get him off the Depakote completely. I'm not sure I've gotten it across to him that I know that Noah needs to be on a mood stabilizer, but that I think Depakote is hurting him more than it is helping him. I need to know if he's in la la land so often because of the medication or because his brain is more messed up than I thought.

We have a phone consult scheduled for next Friday. I get to pay him $140 for a 20 minute phone call. That's a deal, right? Right?

So I'll be pushing the issue then. If he isn't in agreement I guess I need to start looking for a new psychiatrist. Maybe one that takes insurance?

Perspective

One of the things I got out of last weekend was some much needed perspective.

While we go through some crazy shit with Noah, we could have it much worse. So much worse! I had to be careful actually, as I listened to everyone's story, that I didn't project their reality onto Noah's future. Believe me, some of the tears I cried last weekend were because of my fear for his future.

The truth is we just don't know what it is going to be like for Noah, or us with Noah, five years or ten years or twenty years from now. It doesn't stop me from worrying and fretting over it, but when it comes down to it I just don't know. I hope that everything we are doing for him now will make his future easier. Shit, pretty much everything we do is in some way trying to help him. But when you are dealing with a childhood mental illness, you just can't know. You hope, and if you are of the praying sort, you pray I guess.

Still, right now we don't have it as hard as many of the moms that I met last weekend. In the moment that doesn't necessarily make it any easier, but when I can take a step back later and look at what is going on with more perspective it helps. Sometimes anyway.

Some of the women are going through serious shit with their kids. I think I'm feeling a bit of survivors guilt right now. Kind of ironic in a way. It's not like Noah doesn't have one seriously difficult road in front of him. A road that we will try to help him navigate as much as we can.
 

Things here really suck.

I haven't written in a while because it was just too much. Too much shit to put out in the universe.

But that doesn't seem to be helping, so maybe I do need to write.

Life with Noah sucks right now. It's hard not to resent the hell out of him for creating such chaos in our family. I know it's not his fault, but that rarely makes it easier to live with.

His meltdowns have become rages. Animal like rages. You look into his eyes and you see something you have never seen before. He screams, he cries, he slams and bangs and throws, and hurls hate at us. And these happen at least once a day.

A couple weeks ago he went into a rage because he didn't like the bagel I had for his snack before vision therapy. I had to restrain him. Twenty minutes into it I had them call Rich to leave work and come help me. It took 50 minutes from the start of it to get him to a point we could get him to the car. It was horrifying to have to sit in the therapy room trying to restrain him and knowing everyone in the waiting room was hearing him scream that I was hurting him, that he couldn't breath, that he was going to kill me, kill Kiel...and on and on and on.

I am thankful that no one called the police that day. I am even more thankful that no one in our neighborhood has called them considering the daily screaming matches and the times he has banged on his window for "help."

And then in between the rages he apologizes and can be as sweet as sugar and I renew my efforts to stay calm and do whatever I can to help him.

I'm tired. I'm tired of so many things. I'm tired of fighting to get the school to understand what he needs, especially since I'm not really sure what that is myself.

I'm tired of dealing with his poop. And finding poop balls in the dryer because he hides poopy underwear in the laundry. And I'm tired of pee. I don't even want to go into his bedroom because of the smell. And he doesn't care! He doesn't care that it stinks, that sometimes he stinks. He doesn't care that sometimes poop falls out of his underwear and onto the floor of his classroom, which has so grossed out his teacher she has suggested we send him to school in a pull-up.

I am so tired of his refusal to do almost anything we tell him to do. OMG, how dare we expect him to be responsible for something.

I'm tired of waking up at night and realizing that once again he isn't sleeping and he's downstairs watching TV or raiding the cupboards for contraband.

I'm tired of trying to keep things "normal" for Kiel, who is so sensitive to what is going on with Noah that he is constantly asking all of us if we are happy and apologizing for things that he had nothing to do with.

And I am so tired of people, who I know have the best of intentions, telling me they understand when I know they can't have a fucking clue what it is like. You with your "normal" kids and your "normal" difficulties have no idea the hell it is to live with a child like Noah. I don't want your advice. I don't want to hear what worked with your "normal" kids. Because it doesn't work with Noah. Believe me, we've tried.

And yes, I have been talking to his doctor. We are adjusting medication. We are trying not to take it personally. I know it is the RAD and the bipolar. I know that. But it doesn't make it any easier to deal with when he's screaming at you that he wants you dead.

Mental Illness Weighs Heavy in my Thoughts

The subject of mental illness has been heavy in my thoughts recently.

And this is one of those posts that I've started and restarted several times.

It's an inspired post for the From Left to Write book club for The Swan Thieves by Elizabeth Kostova. In this book club we don't review the books, but instead we write a post that is inspired by the book.

As with many of the books we read for From Left to Write, there are many directions I could go with my "inspiration." But as I read the first few chapters of The Swan Thieves I knew what I needed to write about.

Integral to the story is Robert, a renowned artist, who attacks a painting in a gallery. As the story evolves we follow Roberts psychiatrist as he attempts to find out why Robert did what he did, it moves from past to present, giving glimpses into who Robert is, and his obsession with a woman from the past. It's a deeply involved story with many layers.

Early on I guessed that Robert was bipolar, with his episodes of mania and depression. And I knew that I needed to write about Noah, and our recent acceptance that he too is bipolar, although it is still more loosely defined as a "mood disorder" because of his age.

The incident in early December that I wrote about in this post took away all doubt in our minds that not only does Noah have Reactive Attachment Disorder, but as is often the case with RAD children, he has a chemical imbalance in his brain; a mental illness.

Sometimes I feel like Noah is an onion. We keep peeling away layers to try and find out just what is going on inside his brain. So much of it is trial and error. Speculation. Specialists seeing what they specialize in.

So as his parents we take in what the experts tell us, and then as the two people that know Noah the best, we consider, and ponder, and hope we are making the best choices and listening to the right people.

With each diagnosis, as we consider it, and whether we ultimately accept it or not, I grieve for him, for his future, and for our family. Because each diagnosis defines another layer of difficulty he is facing, and will likely continue to face, possibly for his entire life.

To hear your 7 year old child say he does not want to live is almost beyond description. Knowing adults with bipolar disorder and hearing their stories makes me fear even more.

Until now we have worried about Noah's future. Worried about his impulsiveness, his learning difficulties, his difficulties socially. But we never worried for his life. That is a door that has now been opened.

You bring a child into your life, whether by birth or adoption, and you dream about their future. You wish for them a good life, a happy life, a stable life. A life where when they are an adult, with a family of their own, you are there for them, but more as an equal, a friend, than as a caregiver.

When you have a child with a mental illness it is hard not to worry about that future. Will he be more susceptible to drug or alcohol abuse. Will he be able to hold a job. Will he continue to take his medication, and recognize when he needs help.

And what if he doesn't?

You hear of families that have given up on their children for far less. Personally, I can't imagine ever giving up on Noah. But I'll be honest, a life with a child, or even an adult child, with a mental illness like bipolar disorder was not in that fairy tale I created in my mind when we became a family.

I suppose to some it sounds dramatic, but I fear for his life now. 

As a pharmacist I have always been especially interested in psychiatry. I grew up with a mother that suffered with depression and anxiety since my early teen years. Depression runs strong in that side of my family, and it didn't pass me by.

But the intensity in Noah's emotions is far scarier than anything I have dealt with myself.

I'm not giving up hope. We will continue to provide Noah with every intervention and therapy possible. And I will continue to hope that his psychiatrist is correct when he tells us that by regulating Noah's brain chemistry now there is a chance he won't need medication as an adult.

And I will continue to worry. Because I am his mother, and I love him beyond description.

This is an inspired post written for the "From Left to Write" Book Club. A copy of The Swan Thieves was provided to me by the publishers. I am not being compensated for this post and all opinions are my own.

Remember when I wrote this post last week about how fast Noah's mind and body were going?

Well, it's taken me some time to be able to come back and tell you about the aftermath. I needed some time to process, and to decide if I should be writing it here or not. That part I'll discuss a little later.*

Noah was in what I believe is a manic state, or perhaps a hypomanic state. Everything was running fast. He was mostly pleasant, but you could tell it wouldn't take much to push him over to the edge of anger. And it happened. He went from enjoying the first night of Hanukkah to raging and screaming, throwing and kicking. Like a switch was turned on. He alternated between the raging and aggression with hysterical crying, during which he was hiding in the bathtub or his bedroom closet. During those time he told us several times he wanted to die, that he was an idiot, that he shouldn't be in this family, that he was a looser and someone please give him a knife so he can kill himself.

It was the most gut wrenching, horrifying thing I have ever heard. My boy, who is not even eight yet, saying he wanted to die.

We were trying to take him off one of his medications. Obviously that wasn't going to work. We are slowly tapering him back up. He is doing better this week, but is still quick to frustration. It's like walking on egg shells around him. It's exhausting and frustrating. I worry for him, for his future.

*I'm considering starting another blog that would be password protected. I no longer feel safe writing here, and I haven't for a year. My writing has changed because of that and I know I have lost readers. But most important for me, because I've changed what I write, I've lost a big part of my place to work through things.

I think I'll keep this blog and just put the more emotional posts in a password protected one. I need to figure out how to go about it so that those that I want to read get the password.

Anyone else gone this direction? Thoughts? Regrets?

Monday, Monday

I woke up this morning covered in little boy pee. Damn diaper failure. At least it wasn't my own though!

The bus was early, but she waited for us. The bonus was I had a few extra minutes to myself before I had to leave for work.

Too bad I didn't take that time to remember to put my laptop in my briefcase, because as soon as I arrived at work and turned on my desktop I realized that the project I was working on was saved on my laptop.

Fortunately, I'm only about 12 minutes away at that time of day, so I was home, project retrieved, and back at work in less than 35 minutes.

Unfortunately, on my way back to work I drove by a police officer standing on the line in the middle of the road, shooting an injured deer on the side of the road.* I mean I literally drove by as he was aiming the rifle. He waited until I had just passed him to pull the trigger but I heard the crack of the shot. What made it even worse was that the deer was laying down on all four legs, but her head and shoulders were up and she was obviously conscious. She was gorgeous. I know there wasn't anything else that could have been done, but it was still shocking to witness. Of course I started crying and sobbed the rest of the way to work. Just because I grew up a country girl doesn't mean I want anything to do with hunting, even if I understand the practical need for it. I could only think of two things:  that she probably had her own babies that would miss her (I don't care of that is probably romanticizing deer family life) and worse, what if I had had Noah with me and he had witnessed it. He has enough confusing thoughts and nightmares without having to see something like that. Thankfully it was just me.

Work went fine and the day flew by. I even managed to score a couple Pillow Pets at Kohls for $16 a piece with free shipping. Whoo hoo!

Noah got off the bus this afternoon and I could tell his body and mind were moving fast. It took him almost twenty minutes to change into his karate uniform. He spent five minutes of that time running around the house naked. Every part of him is on hyper-drive when he's like that. He talked non-stop to and from karate and during vision exercises, homework and dinner. It continued until his night time meds kicked in and slowed him down enough he could go to sleep. This is his second "manic" period in less than a week. I think it is safe to say that he needs the mood stabilizer we are trying to take him off. He has been off it for ten days and in that time he has had two of these manic episodes and eight out of the ten days he has had major meltdowns in the evening. It sucks that the only way to know for sure if he needs something is to try and take him off of it.

Right now Kiel is in the middle of a bedtime strike and is attempting to charm his way out of the bedroom and down to the couch. Good luck kid.

Better day tomorrow right?

*I live in the 'burbs in an area that was once only farms, fields and woods. It still has plenty of all of that interspersed in the developments that have been built in the last 10 or 15 years. This was a very wooded area.

Two out of Three

Noah doesn't have school this week so Rich and I are taking turns staying home.

He had two awesome days this week, yesterday with me and Monday with Rich. Today he had a horrible afternoon with Rich. Like he was a completely different kid than he was yesterday.

Maybe there were some warning signs yesterday. Or maybe there is no warning and it just is, like a switch is flipped. To the right = awesome; to the left = hell.

After his vision therapy appointment yesterday afternoon we went to the market to grab a few things, which of course turned into a full cart. Noah was so awesome. He was happy. He was helpful and fun and accepting. A joy to be with. Except he was going at 1.5 times normal speed. He didn't stop talking the entire time. Everything was just fast. Not bad fast, just fast. Not-normal fast.

It's so bizarre to watch.

And absolutely heartbreaking when it turns into a day like today, a day where he is definitely not happy.