The During - You don't get casseroles when your child is in the nut house

Another post from the time Noah was in the hospital. 

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I get that people don't always know what to say to me. My honesty about what is going on with Noah is uncomfortable for some.

Having a child at a psychiatric hospital isn't the same as if they were in a "real" hospital. At least that is what most people think.  Noah might not be fighting for his life (right now anyway), but we are damn well fighting for Noah's future right now, and for our family. 

If Noah was in a regular hospital we would be able to stay. We would be able to be with him 24/7 if we wanted. At this hospital we can visit twice a day for an hour. On the hospitals schedule, not ours. They give us a few minutes leeway on either side, but don't bother asking for anything different.

The house is staying neater without Noah here, and the kitchen isn't getting as messy because we aren't eating regular meals. The laundry is clean but still in baskets. The vacuum hasn't been touched in a while or the toilets cleaned. A wonderful friend of mine has gifted me with a visit from her cleaning woman. She will come sometime next week. I feel guilty accepting what feels to me like an extravagant gift, but I am accepting it gratefully. Very gratefully. As awesome as it will be to have someone clean our house, it is even more wonderful to know that we are being thought of and that someone understands how difficult this time is and that help is appreciated.

Two other friends of mine, teachers that have worked with both Noah and Kiel, sent me a gift bag with chocolate and a gift certificate for a massage. While the gift itself is wonderful, it is another reminder that we are not alone. We have isolated ourselves in the past, but as we go through this I am learning how much we need help and that we can't do this alone.

My trauma mommas have been unbelievably supportive. So many of them have been through this themselves. There is no stigma when talking about it with them.

The parent's of Kiel's best friend have been very helpful, especially taking Kiel at times so we could visit Noah together.

Unfortunately, it's situations like this that show you who you can't count on as well. I'm incredibly sad that my brother and his wife have not contacted us at all. I think that hurts me more than anything else as we go through this with Noah.

 

The During - A day in the life of a psych unit mom

Another post I wrote but didn't go back and publish. I thought about not posting it at all, but someday another mother will be going through this and maybe they will find this post. If it can help her by reading about someone else having been there, well, then the words stay. 

I wrote this about two weeks into his stay.

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For the most part I feel like I have my feet back under me. We have a routine now. One of us visits Noah at noon (usually me), one of us at 5:30pm (usually Rich). It depends on the day and if Kiel is at home or school.

I don't have to get Noah on the school bus in the morning obviously; therefore, I have the luxury of sleeping in twenty minutes later. Technically anyway. Most mornings Noah calls and wakes me up. His calls either involve his lunch request or him crying wanting to come home. Sometimes both. Either way the calls are difficult. If his call is just to ask for something he feels distant. If he cries begging to come home I feel cruel.

I shower and get ready for work in a quiet house, since Kiel and Rich have already left for the day. There is no yelling downstairs to remind Noah to eat his breakfast or put on his socks then his shoes. No running down stairs to find Noah waiting for the bus in front of the door...with it closed so he can't see if the bus is there or not. The quiet is more disturbing than it is peaceful.

I get to work. Late. But with no excuse right now other than I'm not a morning person and the motivation to get out of bed is not there.

I check in with Rich to see if he talked to anyone at the hospital or to update him on my call with Noah. We confirm who is seeing him at noon, and who is going in the evening. Who is picking up food for him or what we have at home already.

I missed almost two weeks of work so now I'm trying to catch up. Projects don't stop just because I feel like our life is on hold. I'm concentrating better than I did two weeks ago, but I still find myself drifting off into worry at random times throughout the day. I have no choice but to commit to meetings and deadlines even though right now I find it difficult to see the future at all - be it next week or next month.

I'm very fortunate that my coworkers and my boss have been supportive. One of my coworkers completely took over the final piece of a project I had due earlier this week. My boss has stepped up and is taking a bigger role in another project I'm leading. I feel guilty. In the past I've managed my commitments at work, even when life with Noah was a struggle.

It's not a secret where Noah is right now, but most people at work don't know outside of the team I work with. It's not something that comes up naturally in conversation, although I have been known to just blurt it out.

At 11:45am I leave to visit Noah. Most days I'm slipping out of a meeting early, or trying to rush a conference call so I don't miss any time with Noah. If he's having a good day he might be at the gym, and not notice that I'm not there right at noon. If he isn't at the gym sometimes he is waiting for me. Even if he isn't I'm guaranteed a huge hug when I do arrive, which is the first time I've felt whole all day.

Most days I'm the only parent there visiting at that time. I'm lucky that the hospital is so close to both my office and our home. Some of the children receive no visitors. I don't know if it is because they do not have families or their families are too far away. The other day I watched a child leave dragging her belongings with her in a black trash bag. It made me sad. I don't know for sure, but I don't think she was leaving with a family member.

The noon visit is almost always our best visit of the two. It makes a difference when we are the only ones in the small classroom that is where families are allowed to visit. When it is just the two of us, after we talk for a bit I read to him while he eats lunch. Then he curls into me as best as he can since we are sitting in plastic desk chairs. Some days he falls asleep. The new medication combined with the lack of sleep at night makes him tired. Some days he looks drugged, especially the first day the dose is increased. Before that his body was fast. He was up and down during my visit. The only thing keeping him in the room was my reading to him. He constantly moved in his chair, or paced, sometimes climbing on the desks until I made him get down. He wanted to be there though, and I knew that listening to my voice reading the story was keeping him connected to me in a way that just talking with him could not. Perhaps not having to respond removed some of the pressure on him.

After an hour I have to leave. Visiting time is over and I have to go back to work.

Since I don't have to get home in time for the afternoon school bus I can stay until almost 5pm. I've turned off the alarm on my phone that used to go off at 2:45pm as a reminder that I need to leave by 3pm. I stay as late as I can to make up for my time away at noon, and to try to catch up. It isn't unusual for me to bring work home with me to finish up after Noah's homework is done, or after the boys are in bed. Right now though I don't have the energy to work in the evening.

I get home in time for Rich to drop off Kiel and head to the hospital for his visit. Or, if I'm visiting I go directly to see Noah.

Whoever is at home feeds Kiel dinner. We have only had one real meal at home with Kiel in the last three weeks, and that was because a good friend came to watch Kiel so both Rich and I could visit Noah together. She also brought us dinner! I've learned you don't get casseroles when your child is just hah fucking hah in a psych hospital.

It's 7pm by the time Rich and I are both home. Kiel has a lot more freedom right now since he can handle a less structured schedule than Noah can. We've moved his bedtime to 8pm instead of 7:30pm. We take turns putting him to bed. One of us snuggles with him until he is asleep. Sometimes when it is my turn Rich comes up soon after and goes to sleep himself. Most times when it is Rich putting him to bed he falls asleep with him.

Noah usually calls between 8 and 8:30pm. We both talk with him, and most nights he and Kiel talk too. Some nights, like tonight, the call is good. Other nights he cries wanting to come home. Some nights he doesn't sound completely connected to the world.

I spend most evenings by myself. Rich deals with the stress by going to bed early. I'm tired, but can't sleep.  I watch TV, or check in on Facebook. Sometimes, like tonight, I try to write a blog post. I flit between activities. I don't have the emotional energy to fully concentrate on one thing, or to do anything but sit on the couch. The kitchen is dirty and I don't really care.

I force myself to bed around midnight. It's hard to see Noah's empty bedroom. I've never been a good sleeper and it is even harder to fall asleep now. If it's a good night I'm asleep before 2am. My stress shows up in my dreams.

The alarm goes off, far too early considering my lack of sleep. Then I do it all again.


 

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.

His Empty Room

I have looked forward to Noah's first night away from home for several years. It is a right of passage after all.

I always thought it would be his first sleepover with a friend, or a night with grandma and papa. Maybe his first time at summer camp.

I always thought his first night away would have happened by now.

I have mourned the absence of invites from friends and grandparents.

I never imagined his first night away would be at a psychiatric hospital. Or that one night would turn into fourteen. Or that fourteen would turn into sixteen and then more.

At night as I get ready for bed I look down the hall at his empty room. He sleeps with his door closed, but for now I keep it open. I keep his night light on. I won't pretend he is here, even if I cry myself to sleep most nights because he isn't.

I know he's not sleeping well at night. Yesterday he asked us to bring him one of his blankets from home. (The blanket you made for him when he was a baby Aunt Robyn.)

This morning we were told he is having auditory hallucinations. The door is telling him if he sleeps he will die. When I talked to him about it he said it was a dream. That isn't what he told the psychiatrist though. 

Tonight he asked if I remembered his blanket. I didn't. Now I'm awake at 1:30 am worrying and hoping nothing is talking to him, even in his dreams.

 

Decisions: When the head knows, but the heart is saying "la la la...shut up bitch, I can't hear you."

We find ourselves in the unenviable position of having to make a very difficult decision regarding Noah. The most difficult decision we have faced yet.  It's not that we haven't made difficult decisions about his care in the past, and I know we will likely face even more difficult decisions in the future, but this one just sucks. It means we have taken that next step forward on the path of mental illness.

Noah has been spiraling downward for several months. We've watched it happen, but kept hoping with every doctor appointment, medication change, and relatively good day scattered amongst the difficult, that maybe it would get better.

It isn't though. It isn't getting better. He is getting worse. The line is getting thinner, and more and more often I see him leaning perilously close to the edge of reality.

There are times that I am not sure if he's walking in the same world that the rest of us are. 

He needs to be admitted to a psychiatric hospital. He needs his medications changed and we can't do that safely at home. He needs a set of eyes on him 24/7 that aren't mine or Rich's. 

My head and gut know what needs to be done. My heart though is fighting me and fighting me hard.

I'm scared. I'm scared to leave my little boy somewhere that I can only visit twice a day for an hour at a time. 

I'm scared because he has never been away from home without us.

I'm scared that he will be scared.

I'm scared he won't be able to take GG's blanket. Or worse, that he will and it will get lost.

I'm scared that he will hate me for doing this.

I'm scared that something bad will happen to him there.

I'm scared the other kids will teach him things, or behaviors, that he doesn't need to know.

I'm scared if we don't do it he will keep getting worse.

I'm scared if we do that they won't be able to help him. 

I'm scared that I'm going to feel relief when he isn't here.

I'm scared that if we have a few days of normalcy and peace in our house, days where we aren't constantly dealing with behaviors and meltdowns, that it is going to be even harder to go back to it when he comes home. And yes, I do want to throw up after writing that because I know it is awful. I also know it is true. I don't doubt my love for him, but I am so tired. What does that say about me? 

I expected the psychiatrist to tell me today that he needs to go. Instead he left it very much up to us. He didn't say it was the wrong thing, but he also didn't say "yes, you need to do this now." He did remind me though, that I'm the grown up and that I need to look at the bigger picture, because Noah can't.

The psychologist thinks we should, and he's spent more time with Noah than the psychiatrist.

His teacher is concerned, and said today that Noah isn't the same kid he was last fall.

I know what needs to be done.

I know.

I hate it, but I know.

I'm just not sure I'm ready yet to tell my heart to shut up and let my head lead the way.

I'm scared for what is and what is yet to come.

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.


 

Pulling back and reconnecting

I wrote this post several weeks ago. I needed it to sit for a while to make sure I was ready to post it. I think it's ready now.

Parenting is hard. It just is, and there is no way to really prepare for it. You jump in and hope you swim. Fortunately, Rich and I have managed to keep our heads above water, despite some very deep water and long periods of doggy paddling. Occasionally we have needed some help and managed to grab on to some floaty devices at just the right time.

I've learned from every wave we have managed to navigate ourselves through. I've learned to float when I can, but always have lungs full of air just in case.

And I think maybe I got a little over confident.

Amidst juggling Noah's medical needs, his academic needs, and his physical needs, I think I forgot about his emotional needs.


We had a pretty good summer, and his transition into fourth grade and a new school overall went smoothly (on the Noah scale of smoothness anyway). Soccer was great in the fall and although it took lots of encouragement he's loving playing basketball this winter. We've seen improvement with his reading, and he's keeping up in math. He even received an A in science last marking period and a B in social studies.

He has an amazing emotional support teacher and overall the school is very supportive of him. There were bumps to be sure, but overall we have been so proud of him.

While I am always thinking about what is coming up next and what more we should be doing for him, I let us float the last few months. We received the results of his neuropsych testing from the FASD clinic the end of October. It included several recommendations, medical and academic, that I was very slowly chipping away at, but not with any urgency. Mostly I was enjoying not feeling like we were always being chased by the shark.

Looking back, I think things started to change in November. Perhaps it was Kiel's birthday. Or the month of disrupted school attendance due to super storm Sandy and then school holidays around Thanksgiving. Or maybe it wasn't any of that.

What I do know is that Noah started to struggle a little more, both at school and at home. He created more chaos at home, got into more things around the house we thought he knew he shouldn't. He was plugging up the toilet again, the encopresis was back and I felt like poop was everywhere. He was taking longer to do homework and was almost impossible to keep focused.

He started picking his nose again and washing his hands obsessively. And new motor tics started in his arms and neck. 

It was getting to the point where I didn't trust him out of my site. Too many times he created chaos in minutes. Some of it dangerous. I questioned if I could keep him safe.

He was mouthier and brattier and ruder than ever. And so incredibly oppositional.

Words were said that should never been spoken. 

I was frustrated. Rich was frustrated. The things we used to handle OK started to drive us crazy.

And then we have Kiel. He turned five. He's sleeping in his own room (finally). I'm able to spend more time alone with him and LOVE our Mommy-Kiel days. He's a sweet, funny kid that loves to cuddle. He tells me a hundred times a day (if not more) that he loves me and that I'm his best mom ever. He's the best of everything a five year old little boy can be.

I love both my boys intensely, fiercely, with a depth I never imagined was possible. But the truth is that I like Kiel far more than I like Noah the last couple months.

Looking back, I realize it's an insidious, horrible pattern. The more frustrated we became, the more Noah acted out. The more he acted out, the more frustrated we became. More frustration, more yelling, more rudeness, more acting out.

He was in trouble all the time. And while I was saying we can't let this continue, I was handling it more like a a strict no-nonsense parent, than the therapeutic parent he needed. The parent that understood why he struggled.

He had several rough days at school this week, and on Wednesday he hit a new low. On Tuesday he was in trouble for rhyming "stick" and "dick" (except he didn't know what "dick" meant so didn't understand why he was in trouble) and because he ate like a dog at lunch (except it was like a pig and he can't believe they didn't know that). Wednesday at recess he jumped the property line fence (because they were playing chase and he was running away from the kid that was "it."), he was removed from art class, and screamed at his aid, his general ed teacher, and his ES teacher; all before 1pm.

When he walked in the door that afternoon his first words were "I had the worst day ever."

Those words changed something in me.

Instead of consequences, I gave him a big hug and told him I loved him and it was OK.

We sat on the couch together and I held him.  I asked him if he knew how much I loved him.

He told me "no."

Those words broke my heart. How had I let it come to this? How did I let him get to the point that he questioned my love for him?

You can't fix everything with love, but you are going to find it much harder to fix anything without it.

We talked and cuddled. We reconnected physically. I'm not sure the last time I sat with him like that was.

Before bed we sat on the couch together again. The hour between dinner and bed had been rocky. I could see a physical difference in him. He was more settled when we were together on the couch. Now he looked angry, and sad.

We sat together, although he wouldn't cuddle then, and I asked him why he was so sad. I wouldn't let it go. He covered himself, including his face, with a blanket. He didn't want to talk. He said he didn't know how to say it. He didn't know the words. I pushed a little more.

Finally he said "it's you and Dad." He didn't say much more than that, but I didn't need to hear more. The pieces were coming together.

I know I had pulled back from him. I know things were said that made him question the stability of his life here. I know he felt misunderstood.

He was in trouble all the time and more often than not he didn't understand why what he did was wrong, or couldn't understand why it was such a big deal. It wasn't like he planned on doing those things.

While I could tell other people that he had brain damage and it affected his impulse control and ability to connect actions with consequences, I wasn't using that knowledge as I parented him.

We talked. I made it very clear how much we love him. I apologized for my poor behavior. We talked about how we could both make it better. I reminded him that my job as his mother was to keep him safe, to raise him to be a good adult, to teach him how to be a good person, a good husband, a good father in the future. We talked about how the older I get the more I learn, and that when you are only almost ten you know a lot less than your parents, and that is why sometimes you just have to accept that mom and dad are in charge and even if you don't always like it you have to do what you are told. I'm sure I said far more than he could absorb. It seemed to work though.

Rich put him to bed with a quick whisper from me that he needed to reconnect and I would explain later.

I shared with Rich and made it very clear that we both needed to rethink how we were parenting because what we were doing was breaking Noah.

Noah went to school Thursday morning with a smile on his face. He told me he was going to have a great day. I emailed his teacher to tell him what I thought was going on, especially that I thought he was feeling misunderstood.

His teacher sent me this picture in the morning and said "This is the Noah I know!"

He had a perfect behavior day on Thursday. He also participated in his first after-school basketball program and did great. He was SO EXCITED when he came out of the gym to tell me he received a 100 points (perfect day). He was a different kid than the one we had been living with the last two months.

Sometimes I forget just how easy it is to screw up as a parent. Sometimes I lose sight of why this gig is so important. Sometimes I need reminders, like the sweet, silly face of this boy.

When reality goes beyond the imaginable.

Today started out like most Fridays. Kiel snuggled in bed with me until my alarm sounded, telling me it was time to make sure Noah was ready for the school bus. A quick shower for me, a final check of Noah to make sure he was clean, grabbing clothes for Kiel to change into before we leave for his speech therapy. And then, the bus comes and I tell Noah I love him and to have a good day as I gently steer him out the door. Blowing kisses to him and waving as the bus pulls away. Knowing I will be there at 3:35pm to great him when the bus brings him home.

And the bus did bring him home at 3:35pm and the three of us rushed off to get the boys hair cut in preparation for our visit with Santa tomorrow.

But as I sat and checked email on my phone while the stylist cut their hair, I read about the tragedy in Newtown, CT. It suddenly hit me that there were families (20 if latest reports are correct) that did not get to pick up their children from school today, or greet them as they climbed off the bus.

It is beyond my comprehension. It makes me physically ill to even consider something like that happening to Noah or Kiel. It's like my brain won't let me think in that direction. Road block constructed. Don't go there!

But we have to go there don't we? As parents we have to think about these things? If we don't think about them, if we don't consider how we can prevent things like this from happening again, it could be our kids that don't come home the next time.

We must have better gun control. I believe in the intent of the 2nd amendment, but I also believe we can have common sense gun regulations. You are going to have a very difficult time convincing me that anyone in the general public needs access to a semi-automatic weapon. Or that 20 more kids wouldn't be alive today if someone with two semi-automatic pistols and a civilian version of a military rifle never had access to those weapons. It doesn't matter to me, or to the families of those 20 children I bet, that those guns were legally obtained by someone other than the shooter.

I am sickened, just sickened, tonight as I see people on Facebook adamantly denying that there should be gun regulations. The fact is guns kill people. Guns are designed to kill.

It saddens me that this will again become a political issue. This isn't a political issue. This is a safety issue. A life issue. Guns do kill people. Period. And it is never too soon after a tragedy like this to start the discussion, because it can't continue like this.

(As an aside, this is an interesting article about the lack of available guns in Japan that was written last summer. FYI - I haven't "fact checked" it.)

And as important, maybe more important, we also need better, more comprehensive, and more accessible medical mental health care. Have any of the shooters in our recent history not had a psychiatric condition that someone was concerned about somewhere in their past?

I worry about Noah's mental health every day. Any time a tragedy like this occurs I can't help but think "what if it was my son." And as much as I worry that it could be Noah or Kiel in the wrong place at the wrong time, I mean, what if it was my son that did something like this? What if I'm not getting Noah enough help? I have had to fight for every piece of assistance we have received, and I'm not convinced we have done enough. What if we didn't have the strength to fight for the help we have received? Or the knowledge to know how to do it? 


Tonight Noah was mad at Kiel for something, and mad at me because I turned off the TV and separated the two of them. He went to his desk and started to loudly draw. I asked him what he was drawing. Killing people he said.

I'm still finding it hard to breathe.


 

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.