Counseling

Zack slept most of the day, then when he got up, he started stressing out about the counseling tomorrow. Some quotes:

• I am not going.
• I am going, but I am not going to talk or listen.
• I want to go to another counselor
• You are not trying to make me happy, you are standing in the way of my happiness. If I could kill myself, I would be happy.
  
• I cannot go outside, because a dog would bite me.

• I am just going to sleep through the counseling.

Eventually I negotiated with him to have cooperation for two counseling sessions. I hope it will be easier for him once he has been there and see what it is like. A lot seems to be anxiety about the unknown.

Thanks for the feedback about offering three choices. Yes, I'll have to do something like that, U gave to figure out which will work best for him and us. A friend said to ask about something where the whole family sits together and discusses things like that, led by a counselor. I'll ask about that tomorrow.

Good Things

1. I read through all the paperwork of his hospitalization and one thing that kept coming back. 'Pros: supportive family'. Made me feel better to read that, since I still feel like a failure otherwise :p
2. Today, he actually walked away from the situation when people started eating breakfast, instead of exploding. Of course, it might have helped that he didn't sleep all night so was ready to go to bed anyway. Yes, his sleep schedule is all messed up already, he cannot fall asleep easily at all and he ends up sleeping weird times.
   

I Can Not Eat!

Throwing plate and pasta into the sink. 'NO!!! I don't want Ysa to eat here. I hate the sound she makes when she eats pasta!!! The sound of her fork scraping against her teeth!'

I said he could get his ear plugs, didn't want to. We reached the compromise where Ysa ate somewhere else, watching something she wanted to watch on tv and Zack ate by himself in the kitchen. I have no idea whether I did well. I don't want to tiptoe around him, and expect the other kids to do so. All the other kids ate somewhere else too. Feh, this is not easy. This kept everyone happy in the short run, but is it the best thing in the long run? Do I even have to worry about that, since things change anyway?

I am documenting all this to take to the counselor. What is reasonable to expect from an autistic 13yo who just came home from hospital?

I guess I don't mind one-time accomodations, but I do not want to go back to the egg shells we walked on before this all came to a crisis. Not easy at all.

He is Home

So far so good. I have a lot of questions though and a lot of 'how to best find a new balance for our family'. On the way back from the center, he proposed 'what if i behave for a month, can I get a new pokemon game' I decided that that might not be a bad idea, a nice incentive to get for when he cooperates and does well. Yes, I know good behavior should be expected anyway, but in this case, I think it is appropriate to use bribe/reward/whatever you want to call it.

We have first counseling appointment set up for Friday afternoon. I am very curious to see how that will go, since he always has been super opposed to counseling in the past.

I got a bunch of papers to take to the counseling session with me, I went through all of them last night. Interesting observations, for example, he still is very low on the weight charts for his age / height, and his BMI is only 15.1 He had been low on the weight charts, but now I want to follow up on that with our family doctor. There also were questions about his thyroid, but it looked like tests had been done, so just another thing to ask and follow up.

He needs glasses, which is not a surprise, since both me, my hubby, and Vincent all have bad eyes too, developing around Zack's age. I will set up appt with my dr and talk about all this.

He slept in today. Not sure whether that's a good thing or a bad thing, it was past noon before he got up. Waking him up always has been very bad in the past, he will be grumpy all day. But this way he will fall in weird sleep pattern again.

For breakfast he couldn't find 'a good spoon' and almost fell apart about that. This is not going to be easy.

He's Coming Home!

Just talked to the center, he can come home today! I'll be picking him up this afternoon. Woohoo!

Good Visit

Not much time, but quick update on today's visit. It went very well, he was very calm, and looks like he'll be home on Tuesday. They are trying to get us into local counseling, they got told our local place might have room for him a month from now...

They told that was not acceptable, and they are working on changing that now, we sure do need support when he gets home.

The energy felt different today, he felt much calmer.

Update

First, thanks to all the feedback on the medication dilemma. I appreciate all the different view points to help me make up my mind. For now, we obviously don't have much choices, so I am just going with what the doctors say to get us past this crisis. I don't have enough knowledge to make informed decisions. After the crisis, we'll sit down with his own doctor and talk about all the options available to us. I will also do a LOT of reading on the whole medication issue and he

Zack has been taking his medication now. I talked to the social worker, and they would like to keep him a few more days to monitor his reactions to it. They think he will be ready to come home early next week.

Sigh.

Talking, Visiting, and Medication.

After the hearing, we went to the children's center and talked with Zack, our social worker, and his doctor. Zack's input mostly was 'I want to go home'. He did do some other talking though when the doctor wasn't there. On the upbeat side, he got ear plugs to use when the noise is too much for him. Very simple, but hopefully very effective way of helping him deal with that trigger.

He got started on 0.5 mg of Risperidone this morning. He seemed mostly ok with the idea, but tonight I talked to him on the phone and he told me he had refused to take his meds.

I am very much on the fence about this. On the one hand, I wonder whether he does have a chemical imbalance, and whether the medication will help. On the other hand, I am scared of the side effects, scared of the diabetes that can develop because of that, unsure whether we have tried every other option that's available to us. I also always have felt very strongly about not forcing medication on my kids unless life threatening, and in this case, I just am not sure. Will we be able to get good results with just counseling? Could a change of environment help? Are there other things we can do? Or do we need medication and will it help?

On the pro-med side, letters like this one:

"I wanted to comment on your blog post where you are clearly upset that you have to try medication for Zack.

I know that you like to do things in more natural ways when possible, but I really think that medication may be important for Zack. Especially with a family history of depression, there is a good chance that this is a chemical thing, and that righting this chemical imbalance is probably very important for Zack.

We have put A on medication for depression and the difference is astounding. A was making vague suicidal "threats" like saying he wished he were dead, had never been born, was someone different, etc. That was enough to get him to a psychologist, who felt that we should try meds fairly early on, particularly since we too have a family history, which points more strongly to a chemical cause of the depression. We were reluctant, but the meds make a huge difference for him. (He takes lexapro.)

The best analogy I have heard for it is that you wouldn't make a nearsighted person try to cope without glasses, so why make someone with a chemical imbalance try to cope without the necessary balancing chemicals. We have been told he may be able to wean off them at some point, but we probably won't do it during puberty since that is such a hard/depressing time anyhow.

Anyhow, it sounds like you have agreed to try the meds at this point, so I only wanted to offer you some comfort that I think you are doing the right thing, I think it will help, and I think some kids with chemical issues need drugs, and it can be a great unkindness to withhold them."

I find myself nodding while reading this letter and similar ones. Yes, of course I should give my kid meds, of course I will support him.

Then there is the anti-meds side:

"For his sake, keep him off of that shit. Sorry, I'm really on a soapbox now. Psychiatry has detriorated into a drug pushing business sponsored by Eli Lilly (drug manufacturer). You MUST resist this."

I read about all the side effects of risperidone, and read articles about new antipsychotic drugs carrying risks for children. Gotta love the obsessive googling which enables us to get more information than we ever can process.

I think my biggest issue is that there just is not enough research and experience with a lot of those newer medications. The brain is an amazing thing. Yes, we might be able to get a short term improvement by blocking a certain chemical. But what will it do to the brain and the body in the long run? I really am scared and worried about this.

For now, I have agreed to try medication, mostly because I feel we have run out of other options. I am wondering whether we really have though. For now we obviously have, having him in the hospital. But once he is home, can we try other things? Is there any way to convince him to take counseling seriously? Would it help him to spend some time away from home in a supporting and loving environment, maybe some of my dutch family?

All this while making sure to keep both Zack and all the other family members safe.

I HATE the idea of forcing medication on my kid, medication I can not 100 % be sure it is the best choice for him. Medication which is still relatively new. On the other hand, things were not going well without medication and suicide sure is life threatening. And how can I be happy with myself if I do not give medication when he does need it? But how can I live with myself if I do medicate, and he gets the serious side effects and has lifelong health issues because of them.

I feel I am doomed if I do, doomed if I don't.

The Hearing

We first ended up at the wrong hospital, but finally found the right one, still in time. It was amazing how unorganized it all was though. We came in, there was no check-in or anything. We asked around and were told to just sit and wait and someone would come in occasionally to ask for certain people.

We met the social worker who I talked to on Friday, and she told us it usually takes a few hours at least. We were prepared for a long wait.

It turned out it wasn't too bad, and after a while Zack showed up. He had his very own attorney, and it didn't take long before we got summoned into the court room. The judge listened to our stories, and found probable cause for the commitment. This means that he can be committed for up to 10 days, starting on the day he got admitted (which was last Saturday)

I have to say that it really, really, really, really sucks to be sitting in court and telling that your kid felt not safe to be at home. Not what I ever had dreamt of experiencing with my teenagers. Reality can be a bitch. The judge asked Zack whether he had to say anything, and he first said no, then added 'I want to go home.'

I just wanted to scoop him up and take him home with me, this situation really stinks.

Digging up Old Evals

Spent some time digging up old evals and copying them. While copying, I reread them and saw there were warning signs back then already. Depression was mentioned, and I remember talking about it with his doctor, but we decided that at that point intervention wasn't warranted yet. Not to mention that many other things were going on, we were worried about dyslexia and about him learning to read, and his speech. The depression seemed more like an 'keep an eye on it' than anything else. And of course, I know that my kids are perfect and would never be depressed. Since depressed kids obviously can blame their parents for all their troubles. And I wouldn't want to admit to being a less than perfect parent, so my kid can't be depressed either.

OK, maybe I didn't really think that, but I still feel like we might have missed warning signs back then. Gotta love hindsight, and feeling like a failure.

Parenting was so much easier when the biggest issue was breastfeeding versus bottlefeeding.

Yesterday, I found that I just wanted to curl up in bed, and pull blankets over my head and not come out for a while. I did realize that that might be the fastest way to getting myself depressed too, so instead, I went outside and did grounding exercises.

Today, I had the weird sensation that the world just went on doing their own things while my kid is in the hospital being miserable. It seemed wrong. I remember feeling the same way after my miscarriages, and during other stressful times in my life, when someone died or was very ill. I am pretty sure it is a normal reaction, I just somehow hadn't expected it .

I am coping mostly ok, but boy, this is hard.

Parenting is not for sissies.

Fifth and Last Phone Call

End of the day, the same doctor again, telling me they would like to try him on some medication. They are starting with half a dose. I wrote down the name so I could google it obsessively tonight, and then promptly lost the piece of paper with the name. I will see dr tomorrow anyway, so will ask it again, and get some more info on it. I hate the idea of medicating him, but I feel that there aren't many options right now, so I am willing to try. But I still hate, detest, and loathe the idea.

He asked about history of depression in family and I told him about Zack's father being chronically depressed. He correctly concluded that with depressed husband, it often must feel like single parenting.

Fourth Phone Call

Finally a doctor! We talked for quite a while, he asked me many questions. He kept apologizing that he was taking so much of my time, I kept telling him he could take as much time as he wanted. I promised to dig up old evulations on Zack, which we had done when he got speech therapy in our local public school. This phone call mostly consisted of him trying to figure out what is going on with Zack, what are his issues. It was nice to actually talk to someone medical for a change though, instead of someone who just wanted my money.

Third Phone Call

This time, it was someone telling me the name of Zack's social worker. And informing me that she was out today, but would be in tomorrow. Seems like everything takes quite a lot of time, since he was admitted three days ago, and I felt like nothing had happened yet.

Second Phone Call

'Hello, this is the billing department'

Yes, before I got any medical phone calls, I first got a worried phone call asking me where they could get their money. Gotta love American health care.

We got it all sorted out, but it's always a pain to deal with those administrative details.

First Phone Call

Many phone calls today.

First one, early in the morning.

"Can you be at a hearing tomorrow morning?" Yes, of course I can. The hearing is going to be in the same city as the hospital, about an hour's drive from here. I'll have to get up early.

This hearing is to check whether Zack's involuntary commitment was warranted or not. I am in no doubt that it is, but still not looking forward to the hearing and the reality of stating that yes, my kids entertains thoughts to kill himself and others, and yes, I am worried about keeping him and my other kids safe. 'Hello, my name is Xandra, and my kid wants to kill himself.'

Sigh.

We visited

Today, my husband and me visited Zack. The short story: it was depressing, he was bored and wants to come home.

The long story: the drive wasn't too bad, about an hour. We had to drive around for a bit, but found it relatively fast. The building is low, and darkish looking. There was outside play space, with huge fences around it. It was raining, which only added to the gloominess of the place and my mood. Before we got in, we first had to show a picture id. Once we were in, we had to wait in hallway with some chairs and tables, till a few minutes later someone met us. She told us we would meet Zack at the unit, because they didn't know how he would do when we had to leave again. Otherwise , i guess we would have met him in this hallway at one of the tables.

We got to sit down in a larger room and soon, Zack came in. We had brought him the newspaper with colour comics and some new books. Including a notebook and a pen. We also brought some Luna bars, but he told me he was not going to eat those. But he did accept a package of the disgusting jelly beans from Harry Potter. We had to have everything we brought signed in, checked, and approved by the nurses.

He immediately started reading the colour comics. We talked some, found out not much had happened yet. He has a room by himself, which contains a camera. He needs to ask permission to go to the bathroom. The light in his room has to be on at all times, if he wants to have it dark at night, he needs to keep the room door open. He has a hard time sleeping because of that. When the door is open, there is quite a lot of noise.

He had been playing with lego, had made a dragon, a goldfish, and a bunch of other things. He said the nurses really liked his creations, but he wasn't sure whether they were truthful or not 'because you never can tell with public workers'.

He complained there wasn't much to do, I hope that the books and notebook we brought will help him out a bit. I have no idea how long he has to stay, it feels like nothing really happens during the weekend. So I am waiting for tomorrow and hope to get some answers. I have heard 2 to 5 days mentioned for cases like this. We'll see what happens.

I asked him about the food, he said it was disgusting. He seems not to be starving though, so they must be able to find something he will eat.

There were many kids and parents walking around in the unit. It made me wonder about all the stories behind them, about all the things they must have gone through to end up in here.

I am a bit worried about when he comes home, how things will be going. I think we all have to work together to find a good way of living together. I don't know whether Zack will be easier or harder after this experience. I would hope in the long run, things will be easier and better, but I am worried that in the short term, things might be harder at first. Not much I can do about all this right now anyway, but I find myself pondering a lot.

Asleep

Called at 3:45pm and he is asleep now. He went to bed when he arrived late last night. Woke up at 11am, ate some food and went back to sleep. I guess he must be tired after all this. I know I am :p

The Longer Story

Yesterday, it was not easy to get Zack to the counselor appointment, but eventually we arrived there. Once there, he first refused to get in the office, then sat with his hands in his ears 'I am not listening, I am not listening!' The counselor told him to take his hands out of his ears or go back to the waiting room. She was not seeing him if he behaved that way. He refused to go to waiting room. She gave him choice, have her escort him to waiting room, have me escort him to waiting room, or have police escort him to waiting room. He chose to stay in room instead and listen.

It was a long and hard talk, Zack didn't participate, just read his magazine. I am sure he listened to all though. We got offered options of counseling and participating, or we could have him involuntarily committed. Zack agreed to try counseling, reluctantly, but we still had the option for 40 days from the day of the Ysa incident.

Went home, and things only got worse. Screaming , yelling 'fuck fuck fuck' and so much anger. Will was getting cereal and started crying at the idea of having to eat it with Zack around. Meanwhile Zack told Vincent that he was going to kill us all in our sleep that night. I decided that enough was enough and I could not deal with this at home any longer.

Made phone call, was told to go to ER. Where we spent at least eight long hours waiting waiting waiting. Talking, waiting. Talking waiting. Filling in 5,000 forms. Playing chess. Reading the New Yorker. Waiting waiting waiting.

Our local hospital doesn't have child psych unit, so he needed to be transported to a city about 1.5 hours away. It was around 2am when the ambulance finally arrived. Zack was very calm by now, and resolved to his fate. He still did not talk though, just said 'Piss off' when psych tried to talk to him. Sigh.

Apart from the wait, our local hospital was great, they were very supportive, very understanding. I was projecting my thoughts on them 'I am sure they think WTF is she doing , not getting him the help he needs, she must be a horrible mother' Yes, i know they weren't, but I am good at accusing myself. Also , being there gave me more and more time to realize how our 'normal' and 'doing ok' was not really normal anymore. Too much revolving around Zack. Too much anger from his side. Feh.

The nurse hugged Zack and me when he left. She was so nice and understanding. That made a HUGE difference.

Parenting is not for sissies.

Now waiting for phone call from hospital. I am very very very stressed.

Involuntarily Committed

ok, we ended up, after a lot of drama , with him being involuntarily committed to a hospital. will tell more tomorrow, it involved 8 hours ER wait. feh.

Intro

Zack is a 13yo boy who got diagnosed with aspergers syndrome a few years ago. In some ways, he is doing very well with it. In other ways he is not. Last november we ended up in the local emergency room when he put a plastic bag over his head, but while i was sitting next to him. So it feels like he wasn't really trying, since he know i wouldn't let him. We spent many hours in emergency room, then got sent home.

He has been very resistant to the idea of getting help, refusing to speak to a counselor or contemplate medication. Most of the time, this is ok, and we seem to be managing ok. Although 'ok' seems more and more to involve walking on egg shells around him. It seems like our level of 'normal' has been involving to a level of 'Let's try to not provoke Zack' kind of normalcy. Still most of the time, we deal, he deals, and everything seems ok.

Things happen when he gets frustrated. Frustrations can easily be triggered by not having a clean bowl of the right color, hearing someone hit a spoon against a bowl, not having bacon in the house, there are a bunch of things which can set him off. This will evolve into him screaming, yelling at people. 'I hate you!' is popular, throwing things, and threatening to kill himself and other people. After some time he calms down and goes back to normal.

Last week we had dentist appt and he didn't want to go. So he told me he was going to kill himself after the dentist. Which doesn't make sense, since why go to the dentist at all if planning to suicide. I always have felt it is just threats, a way of saying 'I am frustrated', but this is beyond normal and is getting old. I would love to help him, but he is not open to help from me or others, and sometimes I just don't know anymore. It is easy to focus on the good times and gloss over the bad times.

This morning, I got up and he seemed very pleasant, very fine. He was making himself some breakfast. Then my husband got up, and Zack HATES the sound his spoon makes on his bowl of morning cereal, so Zack fell apart and started screaming. My husband took his bowl somewhere else, and later left the house in a huff. Zack seemed kind of calmed down, but still close to explosion. When his sisters got up, I asked them to wait a bit to give him some space to eat his breakfast in peace. They were not happy about this (I can't blame them) but did comply.

I needed to make a phone call, trying to figure out insurance coverage, since things feel beyond what I can deal with now. When I came back, Ysa told me that Zack had tried to choke her. Not good :( Worse than usual :( Usually it's just threats. This was more and scary. I have always wanted to believe he won't hurt anyone. I still want to believe that, but this is just not acceptable.

After this, Zack finally agreed that he would be willing to come to a counselor with me, but he is NOT willing to say anything to the counselor. This is a big step forwards though, so I'll take it.

I finally connected with the mental health place I was trying to connect with and ran into another 'we have to check insurance and our billing person will get back to you on Monday' (I have been calling them since last week Thursday, more than a week now, playing phone tag and getting frustrated). I just did NOT want to wait till Monday, so I said we had a kind of a crisis here and that seemed to upgrade my level from 'new patient we can fit in within three months if lucky' to 'emergency' and within 10 minutes I got called back by their emergency person.

Finally action!

We have an appointment at 2:30, I hope I can get Zack to come with me, but if not , I will go and talk and ponder options.

I saw Zack's doctor last week (after the dentist related suicidal threats) and she told me I could always call 911 if I felt he was a danger to himself or others. I have to admit that I have contemplated that in the past, but I always felt like 'overreacting'. I have used 911 as threats to get him to behave though when he was out of control, but I always felt bad and guilty about it. It felt like admitting defeat, both to Zack and to the community at large.

Today the emergency person told me the same thing 'If you feel he is a danger to himself or others, don't hesitate to call 911' Good to know. But it's easier to think he isn't a danger and things aren't as bad as they look.

I want to get him help, but he has been totally refusing to get any. Today, it is not an option anymore. Maybe I should have been like that earlier, it is hard to know what is best in any given situation. I like to think I did the best I could, under the circumstances I was handed. But it is easy to beat myself up and say 'if only'.