Disturbing newish behaviour - not sure what to do (long)

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It's been a long time since I posted. My son, Logan, is now 12 and is generally doing very well. A recent neuropsych evaluation confirmed that he's somewhere on the spectrum, showed that he is ADD but not ADHD (secondary to the ASD), dismissed ODD from his list of letters (thank goodness - I never believed it), and his anxiety hasn't really changed. Logan is on Prosac for the anxiety and Olanzapine for mood stablization. It also seems to be the right kind of meds for the newer issues... being an antipsychotic

So, here's where I'd like some help. In the last year Logan has had a change in his behaviours that is really concerning. There are several, but I think they are related. First is something we've sort-of seen before, but much less severe. Logan tends to go into a "red" state when angry, and loses track of what is going on. He will rage, become physically violent, and out of control. Then when he begins to calm he reverts, blanking out the entire incident. He will claim to have no knowledge of what happened or how he happened to get where he is. The incidents are always violent. The time involved varies quite a bit. Here are some examples:

1. Due to exclusion by other kids (long story - typical aspie stuff really, not the issue here) Logan blew up, grabbed a kid and started punching and kicking him. The principal happened to be nearby at the time, pulled him off and brought him to the office. He spent about 20 minutes or so yelling at the principal and making various threats. Then he suddenly stopped, looked around, and asked why he was in the office and what happened. He succeeded in remembering what happened 2 days later.

2. Another event triggered by social misunderstanding, Logan ended wrestling with another kid, got slightly injured, and then went red, punching and climbing over the school bus seats. The driver couldn't get him to stop but by the time the yard supervisor arrived he was able to be removed and reverted to not knowing what had happened. He did remember relatively soon, in about 2 hours.

3. The most upsetting incident from my point of view... Logan was outside with the dog and his sister (who is 4). She refused to play sword fighting with him, so he went red and grabbed her, hit her in the face, threw her to the ground and began pounding her into the ground face-first with hands and feet. I happened to be inside and hear the commotion, witnessing the "pounding" and screamed at him, which was enough to call him off. She ran inside, he came to the door crying "what did I do?". Honestly, I was furious, and found it next to impossible to believe him. Thankfully Sylvanna was not really hurt, most upset and scared, and even forgave him. I told Logan not to come into the house until he remembered what happened, and not even 30 seconds later he was pounding on the door saying "sorry".

So, is this blanking out real? What can I do about these flash temper flares? He's been given tons of support in controlling his temper, encouraged to walk away, ask for help, etc. I know it will happen, don't get me wrong, but I can't watch him every second here at home, and at school there is of course far less supervision.

Next issue is related to extreme moods. When Logan gets really upset or angry he will complain of physical pain, chest pain, "fainting", collasping, paralysis, and loss of consciousness. Afterwards he's exhausted. I don't always get to observe it, but from what little I've seen it "looks" like play-acting. I'm not saying what he feels isn't real, but it looks "all in his head". It really scares the school, and often scares him. He will often cry after and I've had several calls from school about it. I've been asked to bring him home too. I'm suspecting it is a case of severe anxiety attacks, but it's hard to say. There are various causes and certainly the pre-Christmas season showed a huge increase in incidents. I do worry about a "real" physical cause, but suspect it is anxiety. I have not been able to talk to the doctor about these ones yet as they are quite new (the last 1-2 months) and we've not had an appointment (am planning to book one as soon as the office is open post-holidays).

What do I do when he's like this? What can the school do? I tend to just make him get up and do something, or the complete opposite... walk away until he can come "back to himself". I can't stand hearing him cry about how afraid he is, or how he can't control himself. It is terribly distressing for me, and I have no idea what to do. I don't want to coddle it, but I don't want to ignore it. I don't want to deny that it feels real, but I don't want to encourage it either. It breaks my heart.

Third issue is longer standing, since around March last year. It is somewhat related to the second in that it includes a physical reaction that is "in his head". Basically Logan goes into a state of being upset about something he did or that happened. He blames himself, but not in a "normal" fashion. He says that he hears a voice that is internal but "not him" that insults him, accuses him, tells him to not seek help, tells him to punish himself. He definitely considers the influence external, but does not "hear" it like we normally hear things.

I've seen Logan in this state only a few times, but he's told me of many other incidents. He will sit and argue with himself. You only hear "his" side, but he's clearly responding to what he "hears". He screams "stop hurting me" and says that there is physical pain. He cries for help from me, and is clearly terrified.

The only thing I managed to do to help him was create a mantra: "I am myself. I do not need to listen. I make my own decisions." While this helps a bit, it means an hour or more of fighting with "it". Then he just suddenly snaps out of it. He's understandably exhausted. I don't know what triggers it, or what stops it. I have noticed it happening more often if he has for some reason missed his Olanzapine. In particular if he misses 2+ days an incident is pretty much unavoidable. He didn't have the incidents before taking this medication, so I don't know if the meds might have brought it on, or it's just coincidental timing. But the incidents are real and scary. They are NOT NORMAL - I don't know how to put it better. The thought that he might be having schizoid episodes terrifies me - he has enough difficulties as it is.

I have talked to the doctor about the first and third issues. For the first, it is apparently a feature of aspergers that isn't uncommon. For the third, basically the doctor says he's on the right meds for the problem...

I feel lost and confused. I want to help, but don't know what to do. I don't know how "real" these episodes are. Sometimes I feel as though they are just put on, though at a deeper level I know they can't be. I also wonder if sometimes it is real and sometimes put on. But he seems so truly afraid.

So am I.

When I was that age I had extreme meltdowns like that. I still do not as bad though where I'm hitting people. I get to this point where I'm so frustrated and not sure how to explain it. But I always explained myself as either having an on or off. I don't have a middle ground. Either I'm totally normal. But when I have a meltdown and it's turned on, I completely lose turn of complete emotional and logical thought. When I was your sons age I use to do the very same thing. I tried explaining it to people that I couldn't control myself, that I logicaly was turned off. Any sound decision I made was completely broken. For me, now that I am older I'm not that bad. I don't hit people and I have a longer fuse than what I use to as a kid. I learned how to control myself and extend my fuse, now I'm the type to rarely get angry or have a meltdown. I'd suggest trying to help him extend his fuse. Sounds to me he has a very short fuse right now.

Some meds can have a side effect of extreme irritation. Irritability is a side effect of Olanzapine. Do you feel like his moods have been more unstable since medication? There are other mood stabilizers out there, and since it seems to not exactly be working anyway perhaps you can ask his pdoc for a change.

The olanzapine has been better than other ones we've tried. There was Strarrera and Risperidol (if I remember right) neither of which was good, though the Risperidol worked for a bit before backfiring and making him more angry. There might be other options too, but I'd not say he's any more irritated than before, if anything he is better. It's just the psychotic-type stuff that has me really worried.

I'd really look into a med change. There are a lot more options that might work better. The disassociation is a red flag for me, at least.

OH MY -

This was us a year ago, getting worse and worse to the point of hallucinations and screaming "stop hurting me". no joke, I could have typed your post. the forgetting of incidents, violence, swaring at the adult with no filter, hunger....everything.

Finally after the hallucinations, I pulled my son from the stuff that had been stressing him out. We are now homeschooling, he no longer has kids to play with, which is a bummer but..... All of the meltdowns - gone. Hallucinations - gone. To top it all off, we weaned him off of all meds and still none of the crazy behaviors.

A couple of days ago he suffered a huge dissapointment, one which clearly pushed him to the edge and he was able to stay in control. I am 100% sure that six months ago, he would have needed to be restrained.

BTW - my son just turned 12.

I have to go now, but PM me if you want to talk. things were so bad, I was looking at residential facilities as I thought we couldn't keep him at home much longer.

Thanks Kailuamom. While school is stressful, I know from experience that I am not successful as a homeschooler I am just not consistent enough. The other problem is that his sister is a big stressor at home, and there's no real way I can get him away from her. She loves to push his buttons (and everyone else's too).

I would love to talk to you further in PMs though. Any help is welcome.

I do believe that these behaviors are meltdown related, which means that I would recommend following the protocol we all use for mitigating meltdowns: find and eliminate stress factors. Control the child's environment. It all gets harder when they hit adolescence as your son has done, because everything in his body is changing, but it is usually the same thing: a meltdown.

There is build up to a meltdown, even if no one in the family or the child himself is seeing it. The trigger isn't the cause, it is just the straw that broke the camel's back. To keep the trigger from sparking the fire you have to keep that piling straw as small as possible.

Even though the process in the book is a little different than what your son seems to experience, there is a good description of the steps towards meltdown in the book written by one of our ASD members, free for download at ASDStuff.com . I think the main difficulty you will have is that your son, like Kaliaumom's son in the past, doesn't seem to be aware of the build up, and all the things leading up to the trigger. He also may not be exhibiting signs of stress in ways that you will be able to look for, but try anyway: it can be the most subtle things, like the way the eyes gloss, or how jerky a hand movement gets. The sooner someone can find the hallmarks of the build up process, the sooner you will figure out the accumulating stress factors, and the sooner you figure out the accumulating stress factors, the sooner you can make progress.

It is worth noting that stress factors can include things your son believes he enjoys. That proved to be true for my son, who used to be drawn to noisy and crowded places like a fly to the light. As someone told me back then, just because a child likes something, does not mean it is good for them or that they can handle it. Once I really paid attention, I was able to see that behavior problems almost always followed these fun outings. By changing how we approached them, a lot of issues were resolved.

You may have to make difficult changes to meet your son's needs, but it will be very much worth it. It is an investment.

I seem to remember Kaliuamom saying that she would never be able to home school and, yet, that is what she is doing. Everything needs to be on the table if you are going to find the right answer. Everything.

I am sorry things are in such a difficult place, but they can improve. Your son needs you to pay close attention and tell him what he isn't capable of seeing for himself.

I can relate to the sister being a stress factor, by the way. My daughter loves to push my son's buttons, too, and we've had to come down hard calling her on it.

I don't know where your son is in this process, but maybe if you post what he can do in terms of emotional regulation, some of the wiser heads could help with the process. We are barely at the stage of getting our son to identify emotions, so I can't be much concrete help. We do practice having him identify and talk about emotions pre-pre-pre meltdown, but most of the time I have to tell him what emotion I think it is (when I am pretty sure.) I haven't gotten far enough to know what comes next.

If you post more information about where your son is in the self-regulation process, maybe some of the wiser folks can give you concrete steps to follow. If you can get him to follow a calming procedure when he is in a pre-meltdown stage, maybe he'll get into a habit of it, and be able to do it when you are not around??? Do you know what calms him?

Um - Yeah.... I work full time at a carreer level job (so no punching a time clock, but fairly intense responsibilities, travel, working at night from home...). my husband travels for a living. Homeschooling was completely off the table for me. It was non negotiable, I was not considering it. When I heard about successes here, I immediatly dismissed them as nice for you, but not possible for me.

What happened for me was I finally decided was that I needed to bring DS home so I could figure out what he needed. (this was after eloping from school and running into traffic and the big halllucination episode) I decided that if his future amounted to sitting home playing computer games it would be better than this wreck of a child, who I was considering placing in residential care. I really felt to the core of my being that we would lose him forever if things didn't change.

I did not feel we had any options.

At the point when I pulled him from school, I did not plan to homeschool, rather figure out what he needed. Over time I found that the pressure of the school structure was causing him problems. He doesn't do well when faced with "do this now or face consequences", he just shuts down. I learned this by starting HSing with a strict structure. (there were also tons of other stressors, social and sensory being HUGE, but the structure itself was bigger than I imagined).

We hired an MFT intern (so someone with a Masters in therapy, but still working on their hours) to tutor him 12 hours per week. Here's what we discovered - the structure combined with his attention issues causes him stress. Once stressed, he stops learning. We started engaging DS in deciding what and how he would learn and BINGO, success. He has been creating science videos which require so much more learning than the stupid worksheets that had him stumped.

Right now I am almost entirely letting go of concerns over academics. If he is whole and complete, he wants to learn and the academics happen. We had to make a family agreement that our priorities were: Mental Health, Family Harmony then School. It just wasn't working placing School first.

He now is wants to go back to a school structure. I have given him some goals he needs to manage before I will start the process. 1: he needs to get up at 7:30 without me dogging him. 2: he needs to do assigned work when he's told. (Personally I don't place high value on that one BUT if he's to be successful at school, he needs to be able to do this. I am hoping that I can continue with what we are doing and have him take music at the Junior high next year.

If you are interested in a structured program we use www.time4learning.com, it's $20 a month and provides all of the structured curriculum you need (also grades and keeps records). I am not using this fully, but it is an easy way to get started.

To figure out the triggers, we calendered all meltdowns and journaled what was going on that day and just before. (Everything - food, social, environmental, toileting, sleep, meds - everything). Over time we were able to see what the cumulate stressors were, and we stopped haveing "the straw that broke the camels back". Today, because we have eliminated all of the cumulate stressors, he seems to manage the "straws" pretty well.

Good luck!

Wow, lots to think about. My problem with home schooling is that I am a very disorganized person. I can't seem to stay on a schedule no matter what I do. Away from home (at work or when I was in school) I have no problems with the schedules, but once I am at home I just can't seem to keep myself in line. I have a long history of depression and other related issues. It comes and goes, and my levels of activity vary widely.

Logan has very little self-motivation in anything. He doesn't have specific interests the way most aspies do, though he does have many varied interests in general. The problem is that he won't pursue them with any real effort. He in finally reading a lot, while before it was a lot of effort. He loves video games and computer games, so that's an option for learning. He also loves to go places and see things. He likes change and experiencing new things (yes atypical too - but that's him). The structure of school is actually rather hard for him. He's super social, but is inept at social interaction, so is constantly getting into conflicts with others because of it.

For emotional regulation, he has the language mostly, and can usually express himself if asked. He has used a red/yellow/green system or 5 point scale mostly at school. I don't really know what helps him very well. I've tried all kinds of things, but much of the work happens at school, where I have little real access to what's happening. Until the last few years he was fine at home 90% of the time. School was where the issues were.

This year school has been unusually difficult as he had to change schools. His old one only went to grade 6. His friends went to one school, where he was also supposed to go. But Logan was an out of bounds student, and when the support allotments came through they decided that he no longer could go there. This was at the end of June... so I had little to no time to relocate him. Fortunately our own school boundaries had changed within the last year, and Logan no longer had to go to the horrible school he attended in JK/SK. The new school is huge. There are 5 grade 7 classes (similar size to the one hewas supposed to go to, but where he at least had his old peer group) - so roughly 100 grade 7 students. There are 5 JK/SK classes too - so you can imagine how many total in the school... His old school had about 230 students total from JK-6. The school is trying hard to help him, but the support in the school is miserably inadequate. In his class alone there are two kids with Downs Syndrome, and I don't know how many others with difficulties. There is only one support worker/EA for the entire grade 7-8 population of 200 kids.

I would love to homeschool Logan. I tried when he was in SK (I pulled him from that horrid school and teacher). I'm just really bad at it. My emotional instability makes it really hard for me. Maybe now that he's older and can perhaps be more self-directed it might be better.

Then I'd also need to persuade my husband that it would be better. Not sure if I'd have luck there or not. Lack of peers wouldn't be nice either as we live on a farm so there are not even any neighbour kids to play with.

I sound like a sob story here I don't mean to, really. Doesn't help that the kids are fighting in the background as I type... Normal sibling fighting, not escalated stuff... lol

I'm just really frustrated overall

All I can say is that for us it couldn't really get worse, so at least at home, I can figure out what's needed.

I resist structure and am not particularly organized, but my bottom line is I really felt like we were at a life or death crossroads. You may not be there - if not, I hope you don't get to that place, it is a very scary bad place to be.

The other thing is Hsing may not be your answer, but it may be helpful to know that by trial. If you tried it when he was little, it is very different than at 12, and like I said the least productive day at home at least isn't doing the kid damage.

Some thoughts I had while reading this... and it sounds very scary to me -- having black outs like that and completely "losing" one's place in time and space -- I believe that your son is not pretending to do this to get out of trouble:

-- change in meds may be an issue: dosage of meds, formulation of meds (sustained release versus not sustained release for example)

-- combination of meds in other words fluoxetine plus olanzepine as a combo -- can this cause a problem and also dosing of each drug (mg of fluoxetine and mg of olanzepine should be optimized for him if this is indeed a good combo)

-- hormonal changes! Since he is 12, he is probably going through some hormonal changes and these can have big impact on mood and behavior -- I'd also look at the impact of hormones and teen growth transition with each meds. The SSRI type of antidepressants of which prozac belongs have shown to increase problematic behaviors in children and adolescents (in the published studies there is an increase in suicidal ideation, I'm not trying to scare you or say this is what is happening, only to suggest that SSRI type of antidepressants have different effects in children and teens and any time a child or teen is on a SSRI drug they must be monitored very very carefully)

-- the rage -- is there a possibility of an underlying mood comorbidity like anxious depression or bipolar disorder. Again I'm not saying this is the case. My main concern is to identify the underlying ORGANIC (medical) causes of the issue.

Justriding - funny you say that, I'm so glad you did! That was actually my plan for bringing him home. Reduce all stressors and fix the meds. What I had found with the trial and error process, is that you never knew whether it was a reaction to a med or an interraction between meds.

My plan was to wean him off of what he was on and then see what his real symptoms were and then get him on the right meds.

How suprised am I that after the weaning.....all of the symptoms are gone.

Now, is it possible that meds could help my child? Yes. I am pretty gun shy though after the radical, violent and psychotic episodes. Were they from the meds? I don't know, but the improvement is so huge off of meds, I have been surprised.

We are going to Stanford for an evaluation soon, maybe they will be able to figure out ways to help with meds, I don't know.

It sounds to me like the child is in an incredibly difficult school situation and underwent a huge change in school situation just as his hormones were kicking in. That could be the main source of the problem right there. AS kids do not adapt well to major change, especially when that change puts them into a less suitable environment.

What about a much smaller, private school situation? Is there anything like that where you live?

Time to brainstorm every option you can think of, and maybe to call an emergency IEP at the school and see if there is anything more or better they can do for him.

My gut says that the things you are seeing are reactive, and the primary piece in a solution will be in fixing his environment.

Things may well be reactive, or at least in part. The issues did start before last school year ended, but that doesn't mean that it rules out the current stressors. When Logan was in grade 1 he went to a small private school, sadly the enrollment was too small and they closed. any other private options either don't have the size advantage I need, have a purely book-learned approach, or are too expensive. I can't consider something that costs $30-40,000 a year. The old one was $500 a month, which I managed, though even that was tight at times.

I am happy with the Prozac in general for Logan. Before he went on it he was having severe anxiety. He would get into a panic over the weirdest things, such as fretting that an airplane would crash land on top of our car while we were driving... These illogical panics ended with the Prozac. He also stopped having the terrible nightmares of waking to a world where everyone but him had died. Earlier he had terrible separation anxiety to the point where I couldn't stand on the opposite side of a closed door with a window without him panicking. He's even panic in the same room as me if he was facing the other way and I didn't immediately respond to his comment of "I love you." So it has greatly improved.

Generally I hate medications. I don't like Logan being on them. Sadly as he has grown older the need for them has become more evident. I will for sure talk to the doctor about the current meds and if there is any chance that they are contributing to the current problems. I'm not sure how seriously she takes my concerns. Not that she's ignoring me, but the constant appeal to me as the parent who knows Logan best... well I go to her for advice... She's not a bad doctor or anything (I hear she's one of the best) but I feel so helpless sometimes.

I just don't know where things are going.

I will try to keep track of what gets Logan going, but from what I can tell it's nearly everything that builds up... Little stuff, usually related to not getting to do what he wants to do, or to being angry at himself for not doing a better job, or others being annoying, or... Well, pretty much anything. It just builds. Sometimes he's fine about it all and shrugs it off, sometimes he just can't cope with even the smallest thing. Some mornings just start out that way, others he's happy as can be. His moods change rapidly on a normal basis, so it's hard to say.

I'm not sure how much puberty hormones have come into play yet. He's not showing too many signs of puberty beyond the average pre-pubescent boy. It's coming, don't get me wrong, but he's not in the throes yet (thank goodness). I do worry that the beginning of these problems are puberty related though I know my own depression started at 14 with puberty