Meltdown recovery

[peglem]

I wanted to appeal to those who have or have had severe meltdowns....I've been working on helping Allie recover from them when they happen. There has been some progress with this. I wondered if you could share your experiences with me re: things you do to calm back down and regain control.

[roadracer]

I also need this help, as when I mentioned my methods here people told me I better stop before I get put in the hospital. I have been working on it but could still use some more methods.
When I was little I went threw the head banging, was made to stop, but just went to biting, then to hiting myself in the head, to more biting...etc. I think you get the point. So I have made (atleast what I think) is great progress in stopping the biting.
The only method I have is to notice when everything is starting to build, I must get away to some place calm, to calm myself before I get to the point where it is to much to handle, so I dont go into meltdown mode. When it does happen though, after, I dont think there is anything a person could offer, or say, or do that is going to calm me. The only thing that calms me is the thing above that I am not supposed to do. If I cant do them then I just have to let it run its corse and everntually I will feel better.
I did have them strong pills I tried before to calm myself, but I only ever tried them two times, because the side effects where so bad.
I can tell you that for me, if my mom tried to comfort me or tried to help calm me, it would make it ten times worse, for me the best thing people can do is leave me alone!!!! The best I can do is get away from everyone to a quiet, calm place.
Sorry I cant be of any help, as I really wish I could give you a great remidy

[peglem]

So, when you're actually in the midst of a meltdown, self injury is calming to you? Just trying to make sure I understand. Also, would somebody else injuring you have the same effect? (not that I'm advocating that!) Is it like an irresistable compulsion to injure? Can you tell me, is it the act of inflicting the injury that calms, or the injury itself?

[roadracer]

I will ansear those questions, but I got the idea from the last time I talked about this, that I really shouldnt talk about it because there is a chance I could be put in the hospital because of it

So, when you're actually in the midst of a meltdown, self injury is calming to you?
Yes, very, it is the only reason I ever did it, when I was little, like 6 years old banging my head was calming, would drown out the bad sensory things, and that is why I did it, because it was my only method I had to calm myself. I would do a self injury every time I would get over loaded. So now when I bite, it is for the same reason, to calm myself. The feeling is like someone just druged you, I dont feel pain, only calming like someone gave me a sedative. Head banging is a much more intense feeling than biting, and since I never really feel pain while doing these things, well I can see how kids can go to far with it. When I was little and did the head banging I knew just how hard to hit my head to get the feeling, and never went to far with it, but I can understand why autistic kids do go to far.

Now my understanding from what people say is that there are kids who also do self injury because they are under sensitive and need stimulation, but I have never experienced it that way. I really think it might be a misunderstanding among the so called experts, because it does not make any sence to me, but I am far from a expert, so I really dont know, but I really think that autistic people usually do it for the same reason that I do/did it.

Also, would somebody else injuring you have the same effect? (not that I'm advocating that!)
Heck no, if someone bit me I would probably punch them a good one :eek: anyway my experience is that the person knows just how hard to do it, like how hard to bite or how hard to hit there head.

Is it like an irresistable compulsion to injure? Can you tell me, is it the act of inflicting the injury that calms, or the injury itself?
It is hard to stop myself from doing it when I am in meltdown mode, but using the methods that grimes recomended to me I cut it way way back, but still end up doing it during the bad ones, but I am working on it, as you need something to replace it slowly to be able to do away with it. I have been squezing between my thumb and fingure, it is not as good but it can get me threw without biting into my arm or hand for most of the time. I have stoped punching things also when I get like that. Before with the biting and the punching I could really bloody myself up during a bad meltdown.
REALLY hope I did not freak anyone out with all that

[roadracer]

What does Allie do during a meltdown?

[peglem]

I will ansear those questions, but I got the idea from the last time I talked about this, that I really shouldnt talk about it because there is a chance I could be put in the hospital because of it

I sure appreciate your response. My child can't tell me anything, so I don't really have another way to get the information. I don't see how you could be hospitalized from discussion here, but maybe you know something I don't.


Now my understanding from what people say is that there are kids who also do self injury because they are under sensitive and need stimulation, but I have never experienced it that way. I really think it might be a misunderstanding among the so called experts, because it does not make any sence to me, but I am far from a expert, so I really dont know, but I really think that autistic people usually do it for the same reason that I do/did it.
Yeah, I was told this a lot by "experts" when Allie was younger and just never made any sense to me. My Hub and I use the "she needs the input" line as a kind of sarcastic joke when we can't figure out why Allie is doing something. I think this theory was developed by the sensory integration people because they noticed that SI stuff can decrease self injury...

It is hard to stop myself from doing it when I am in meltdown mode, but using the methods that grimes recomended to me I cut it way way back, but still end up doing it during the bad ones, but I am working on it, as you need something to replace it slowly to be able to do away with it. I have been squezing between my thumb and fingure, it is not as good but it can get me threw without biting into my arm or hand for most of the time. I have stoped punching things also when I get like that. Before with the biting and the punching I could really bloody myself up during a bad meltdown.


The reason I asked about the act of injuring vs. the actual injury is because I'm looking into the opiate theory of SIB. I wondered if the injury causing the release of endorphins was what made you calm (I know you can't tell, since you don't see endorphins) or just the act of satisfying the urge to injure.
My daughter only bites herself when she is prevented from head banging. She does try just smacking herself in the head, too. (doesn't seem to do the job, but hey, she's trying). So, today, I tried pinching the web between her finger and thumb-not hard enough to bruise or anything (I do this to my own hands when I have a headache to provoke endorphins). It did seem to help. My daughter reflexively strikes out at me when I interfere with meltdown, but at the same time seems to want me there to coach (for lack of a better word) her through it.

REALLY hope I did not freak anyone out with all that
I think this topic is way under-discussed on autism boards. I get the feeling that parents are uncomfortable telling other people their child is doing this. It really makes you feel like a crappy parent (emotionally, not intellectually) because we're supposed to be the ones who make things better when our child is hurting and we feel so helpless to do so.
Anyway, I do truly appreciate the fact that you're willing to put this out there to help me understand. Its very kind of you.

[peglem]

What does Allie do during a meltdown?

Oops, I started my previous post before I saw this.

She smashes her head into hard surfaces, mostly walls. She bites herself if she can't bang. She smashes her knee into her face. She elbows herself in the hip (this causes some pretty significant bruising on her hip and lower back) and she smacks her fist on the top and side of her head. There was a period of time when she was pinching her thighs and upper arms, but she doesn't do that too much anymore. She almost never bites her hands anymore either, but sometimes comes home from school with wounds from biting.

[tgrimes]

I will ansear those questions, but I got the idea from the last time I talked about this, that I really shouldnt talk about it because there is a chance I could be put in the hospital because of it




What thread are you talking about or was this in pm?

[roadracer]

I don't see how you could be hospitalized from discussion here,
I dont also, so that is the reason I posted about it anyway.
I wondered if the injury causing the release of endorphins was what made you calm
yeah, I think it might be a brain chemicel thing, it is the only reason I did it because the feeling is like a sedative med feeling.
The calming meds really worked, just being able to take it when I needed to, they were way more calming then I needed, but they also had side effects that were worse then everything else. When ever I get a doctor I guess I should try a med for when I need it.

[tgrimes]

I think this topic is way under-discussed on autism boards. I get the feeling that parents are uncomfortable telling other people their child is doing this. It really makes you feel like a crappy parent (emotionally, not intellectually) because we're supposed to be the ones who make things better when our child is hurting and we feel so helpless to do so.
Anyway, I do truly appreciate the fact that you're willing to put this out there to help me understand. Its very kind of you.

This is so true... but people are scared they will get policed through cps or something by describing an incident in detail. Hard to tell professional help as well.

[peglem]

What kind of med was it? What kind of side effects? Allie has been through tons of meds, with minimal help and sometimes they make it worse.

But, the one I want to look into next (don't know if I can get a doc to try it or not) is Naltrexone. Its actually an opiate blocker, but, blocking those receptors seems to cause the body to make lots of endorphins, so, as the theory goes, you don't have to provoke them w/ SIB.

[peglem]

This is so true... but people are scared they will get policed through cps or something by describing an incident in detail. Hard to tell professional help as well.

When Allie was younger I was worried terribly about somebody seeing all her injuries and reporting to CPS. But, with time, I've relaxed a bit because I think I have enough professionals who would attest to the fact that I'm dealing with it in better than anybody else could. Telling professionals is hard for me because they don't really understand the magnitude of the problem unless they see an incident.

[roadracer]

What kind of med was it? What kind of side effects? Allie has been through tons of meds, with minimal help and sometimes they make it worse.

But, the one I want to look into next (don't know if I can get a doc to try it or not) is Naltrexone. Its actually an opiate blocker, but, blocking those receptors seems to cause the body to make lots of endorphins, so, as the theory goes, you don't have to provoke them w/ SIB.

Heck, I dont know what med it was, I just dug up a few bottles, one says promethazine, would that be it??? another says mirtazapine, and yet another says fluoxetine, or maybe it is non of them and I cant find it, then there are some bottles with some giant horse pill looking ones that I think might be antibiotics. I dont really know, I dont take any of these and I think I only took maybe one or two pills out of all these bottles, I need to get ride of them all.
I am afraid of taking a tylonal or advil, and when I got my widom teeth out I refused to take a pain pill. I have a big fear of meds.

The side effects of the one I tried was double and blured vision, but the double vision might not actually been from the med because I get double vision when I am tired, and it also mad me extremely dizzy and so freaking happy that is was TO happy, if that makes sence, I think you could have traquelized a horse with them.

[peglem]

I don't know about promethazine..never heard of it. We tried mirtazapine...I really thought that one would be good. Its supposed to make you sleepy and increase appetite. (Allie was going through a period of poor appetite and weight loss + she always has sleep issues) It caused bad rages, even at very small doses. Don't know if it increased appetite-we gave it up after 3 days. Fluoxetine is, i think, prozac (or what's the other "p" SSRI?), which we also tried many years ago...I don't think it did anything.

Thanks for the reply. And you should get rid of those.

[peglem]

Looked up promethazine. Its an antihistamine.

[tgrimes]

When Allie was younger I was worried terribly about somebody seeing all her injuries and reporting to CPS. But, with time, I've relaxed a bit because I think I have enough professionals who would attest to the fact that I'm dealing with it in better than anybody else could.

See? School is good for some things... :rolleyes:


Telling professionals is hard for me because they don't really understand the magnitude of the problem unless they see an incident.

Yes, and they want to move on, like it's really a topic they want to avoid.

Can i just say something here? I know you want advice from people who have had this, but just want to share what I think the situation is with Theo, and most of the SIBS (but I'm not sure.) Once he was able to make sentences, he said 'i want to die' along with the injury, or afterwards. Now, he talks about suicide usually sometime before the behavior. When he does it now, it seems like he is trying to get an idea of enough pain, so he can get a thought of dying out of his head. I know that at this point i could just ask him if that is why, but I don't want to ask, because I am worried I will put that idea in his head (if it isn't true.) So I just go with his statements about why he is doing it. Which are above. After each incident, there is a period of time where he is just tired and seems wiped out, like he has beaten himself into submission. I don't mean he really beats himself up, in his case he never did this hard enough or long enough to need a helmet, so that is not something I can identify with. He has not had an incident since the last time i posted about him feeling that way.
Having said that, my older son had different meltdowns and he never said anything about dying, he talked about having tingling in his hands and feet before an incident, but could not remember the incident itself. He only has 'regular' tantrums now. (meaning the frequency or duration I would kind of expect from any kid)
Anyway, I don't know if any of that is helpful because it's not firsthand, but hope you get some more answers on this.

[peglem]

See? School is good for some things... :rolleyes:



Yes, and they want to move on, like it's really a topic they want to avoid.

Can i just say something here? I know you want advice from people who have had this, but just want to share what I think the situation is with Theo, and most of the SIBS (but I'm not sure.) Once he was able to make sentences, he said 'i want to die' along with the injury, or afterwards. Now, he talks about suicide usually sometime before the behavior. When he does it now, it seems like he is trying to get an idea of enough pain, so he can get a thought of dying out of his head. I know that at this point i could just ask him if that is why, but I don't want to ask, because I am worried I will put that idea in his head (if it isn't true.) So I just go with his statements about why he is doing it. Which are above. After each incident, there is a period of time where he is just tired and seems wiped out, like he has beaten himself into submission. I don't mean he really beats himself up, in his case he never did this hard enough or long enough to need a helmet, so that is not something I can identify with. He has not had an incident since the last time i posted about him feeling that way.
Having said that, my older son had different meltdowns and he never said anything about dying, he talked about having tingling in his hands and feet before an incident, but could not remember the incident itself. He only has 'regular' tantrums now. (meaning the frequency or duration I would kind of expect from any kid)
Anyway, I don't know if any of that is helpful because it's not firsthand, but hope you get some more answers on this.

So, do you think for Theo, its a way to get an obsessive thought to go away? I know for Allie, sometimes, OCD behaviors will trigger a meltdown. That must be scary to hear your child talk like that.

[tgrimes]

Maybe... but it usually starts over feeling like a 'failure' somehow. He even uses that word. This has been traditionally connected to school in his case. At least 4 of the the last 5 really bad times were. However, one of the last times was following an obsessing spell, some thing he wanted and i wouldn't buy, (yeah, you can imagine how i felt after that day) but usually when he's obsessing it's about something he really can't give up, like he's insistent on talking about it, and nothing else.
So, just saying, if he was obsessing, wouldn't he start by talking negative for a long time repeatedly? Or the fact that it's negative, no talk, just hurt?
Yes, it is so scary, we really can't talk sense to him when he gets in that mood.

[peglem]

Hmmm...I can't tell if Allie's having obsessive thoughts(hence my trying to read her mind through a surrogate here), but I know they can happen without a compulsive component. But, You know your child, so you're probably right.
So, is there anything you can do to help him out? It sounds a bit like depression. Does he come out of the "mood" after a meltdown? Has he tried increasing endorphins by pinching between the thumb and forefinger?

I'm trying to figure out if the urge to SI comes from an imbalance between endorphins and ACTH. So when anxiety is too great, the balance is skewed toward ACTH and injury results in a flood of endorphins which rebalances the two.

[Aspigander]

I'm still trying to wrap my mind around my more severe meltdowns, when I was younger. I used to have aggressive meltdowns, but it tended to be outward (to others) rather than inward (to myself) aggression (and yes, I hate talking about it, but it's reality). I'm not even sure about meltdown recovery. I believe, with the understanding I have now, that when my parents were getting ready to call the police because of my aggression, I'd run to my room and I'm not sure if I just suppressed at that point or if the quieter environment helped get me calmed down. I don't even know how long it would take to calm me down. I do believe that had I not retreated (for fear of being hauled off by cops), I wouldn't have been able to either suppress or recover, whichever it was. So I think getting away did something.

I believe most of my meltdowns aren't/weren't so much sensory issues as much as anxiety. It's like I'm in survival mode -- do what I need to do to get the anxiety to go away. This makes things difficult on my poor mom when she's trying to retreat from me when my anxiety is building and I'm approaching meltdown, as my anxiety levels rise at the thought of not resolving the issue that's making me anxious in the first place, and that's just enough anxiety to push me over the edge into meltdown. I'm not physically aggressive to her (won't hit, punch, or grab her throat), other than sometimes trying to block her escape. Ironically, it's not until she has escaped and I'm alone that I'm able to calm down.

Sometimes, as discussed in another thread, I'll start pacing when I feel the anxiety building to avoid a meltdown. This helps to just get out enough of the energy that is generated by the anxiety to not start melting down. Once in meltdown mode? I think I'm realizing, just typing this post, kind of having a lightbulb moment here, that the best thing may be if I can get into a space where I'm alone. I just need to figure out how I'm going to pull that off if I'm melting down before I get to the 'survival mode' phase of a meltdown.

When I say survival mode, here's the best analogy I can come up with. Something I think I've heard many years ago, but honestly it's been so long that I'm not sure if I really did hear it or if I just imagined it. So this may be a poor analogy, but the best one I can come up with. I've heard that if someone is drowning, struggling to hold their head above water, and someone swims out to rescue them, there is a danger that the drowning victim may push the rescuer underwater to help them stay above water and keep from drowning themselves. It's not that they are trying to injure or drown the other person, but at that point they're acting on pure instinct, just do what they need to do to keep their head above water and stay alive, and thus may go to push the other person down in that process. That's kind of what it's like when I'm in the survival phase of a meltdown. All rational thought of "if I just get to where I can be alone, I'll eventually calm down" goes out the window, just like any thought of "if I let this person pull me to shore instead of pushing them under, I'll live" goes out the window for the drowning victim in my analogy.

[lisa6wks]

Peg,
I don't know if this is something that will help, but I used to have a student with severe meltdowns ( he had smith magenis syndrome) and he used to like being wrapped in a blanket, like a cocoon and then I would sit with him and keep a hand on him for comfort. He would quickly calm down and begin to suck his thumb.
One of my students now, has some pretty bad meltdowns as well, we are putting her in a swing and turning her, 5 times to the left, 5 times to the right for approx 2 to 3 minutes. It does seem to almost sedate her a little. We are doing it every hour and every hour and a half or two hours we are doing a combo of brushing, putting pressure on her joints, lotion message and hand hugs. It seems to be cutting down on the amount of meltdowns she is having although I understand it can take up to two weeks before you see any results and we have only done it for a week. I really hope it helps though.

Lisa

[peglem]

Thanks, Lisa. That's in keeping sort of with what we are doing when a meltdown happens-trying to set up some kind of regulatory pattern- swaying while hugging, clapping or tapping, familiar song, where we stop for her to supply the next word, anything rhythmic seems to help bring her out of it. The school has not identified sensory issues as a trigger (although I know sometimes they are for her). But her Iep meeting is tomorrow (EEEK!), so I'll bring up a sensory program for her. Implementing regulatory patterns in the midst of meltdown is difficult because you will get punched, kicked, bitten, pinched and head butted in the process. But, a sensory program may help to reduce # of incidences.

[lisa6wks]

Peg,
What you are saying makes so much sense. Does she have particular music she likes listening to? We also find that singing familiar songs to our student helps her to calm down, she is non verbal so she doesn't sing with us, however when she is happier, she "sings" melodies without words.
Do you have an OT or OT consultation included in Allie's IEP? I am hoping they are writing a sensory diet into her IEP under the section of supports/modifications. One thing we have found to be helpful is to leave the brushes out for our student to use on herself when she feels the need. I wonder if something like that would help with Allie? I really feel for you, luckily my student is pretty small, but she is taking a pretty big toll on my body now that I am in my 50's and I hate the restrictions that have to be placed on her because of our not being able to trust that her behavior will always be safe.

Lisa

[peglem]

Allie is nonverbal as well. When I say she gives the missing word, I mean sign. Raffi music (can anybody listen to that and stay in a bad mood?) lends itself well- Like his little ducks song- we stop where you'd usually say ducks- she signs the animal she wants. Other songs she uses are "Oh, when the _______ come marching in" and "Hey diddle diddle the _________and the fiddle, the______ jumped over the moon"

Lots of times the OT is not at the IEP meeting...Bottom line, the school, I think has given up because their program isn't working for her. She's 14 yo.

[roadracer]

just wondering, why is it important to interfere when they are having a meltdown? I only know what it is like for me, and when I was young and if my mom would not leave me alone during a meltdown it would make it much worse, and if I didn't get that time by myself to recover I would be on edge for another one soon when something else happened. I know every one is different, but if she is punching and kicking I would see that as a sign she wants left alone to be by herself so she can fully recover, so why is it important to do the stuff while she is having a meltdown?
Also what is a sensory diet?

[peglem]

just wondering, why is it important to interfere when they are having a meltdown? I only know what it is like for me, and when I was young and if my mom would not leave me alone during a meltdown it would make it much worse, and if I didn't get that time by myself to recover I would be on edge for another one soon when something else happened. I know every one is different, but if she is punching and kicking I would see that as a sign she wants left alone to be by herself so she can fully recover, so why is it important to do the stuff while she is having a meltdown?
Also what is a sensory diet?

She will hurt herself. Last summer, we had her in the emergency room 2x. (or maybe the summer before) The first time she had a raccoon mask of bruising all around her eyes, from hitting her head-not her eyes (the blood was just pooling there). The second time her whole head felt squishy and spongy...we were told it was just a big bruise. She already has a bony formation under the skin on her forehead from banging. Her hands have knots, scarring and callouses from biting. There have been many, many times where she will pull me on top of her to hold her down. It appears to me that she wants help with it. But, ultimately, I want her to learn how to get herself under control. Adulthood is looming and I won't be alive forever. I have a pretty good idea what will happen if this is still going on in adulthood. She'll most likely be chemically restrained by people whose main concern is their own comfort and ease. We have tried just leaving it alone...it doesn't improve anything. The very first suggestion we got from the behavioral experts, when she was very young, was to try ignoring it. It escalates when it is ignored.

A sensory diet is a routine of various calming sensory stimuli-brushing the skin w/ a soft brush, deep pressure, that sort of thing. You can learn more by looking up sensory integration...you have sensory issues, right? It could be something that would help you with that.

[roadracer]

She will hurt herself. Last summer, we had her in the emergency room 2x. (or maybe the summer before) The first time she had a raccoon mask of bruising all around her eyes, from hitting her head-not her eyes (the blood was just pooling there). The second time her whole head felt squishy and spongy...we were told it was just a big bruise. She already has a bony formation under the skin on her forehead from banging. Her hands have knots, scarring and callouses from biting. There have been many, many times where she will pull me on top of her to hold her down. It appears to me that she wants help with it. But, ultimately, I want her to learn how to get herself under control. Adulthood is looming and I won't be alive forever. I have a pretty good idea what will happen if this is still going on in adulthood. She'll most likely be chemically restrained by people whose main concern is their own comfort and ease. We have tried just leaving it alone...it doesn't improve anything. The very first suggestion we got from the behavioral experts, when she was very young, was to try ignoring it. It escalates when it is ignored.

okay, I understand now, and I really hope she can get it under control. Being druged by uncaring people sounds horible. You know what to do and know better then the so called expert that said to ignore it, you know what helps Allie.
My hands look bad also, not something I am proud of, but I cant say I ever went that far with it. In that case I can see how the music and stuff would help for after. Music can really get me in a good mood again after something like a meltdown, but for me it does nothing to help during.

A sensory diet is a routine of various calming sensory stimuli-brushing the skin w/ a soft brush, deep pressure, that sort of thing. You can learn more by looking up sensory integration...you have sensory issues, right? It could be something that would help you with that.

Yes, this is what causes most of my problems, now as a adult most of my meltdown like episodes are from sensory overload, my sensory problems are by far the worst thing I experience everday. I am going to look it up now, thanks

[lisa6wks]

Peg,
I know you are a teacher (from both sides) as well. Ask for the sensory diet and if they say they can't put it in the IEP because the OT is not there, then end the meeting and ask for a new date. There is no way I can believe a child like your daughter, they way you have described her, cannot have sensory issues. I just think they really start discounting it once the child gets older. I think she needs a swing there at school, maybe a weighter or pressure vest and a daily schedule of sensory tools to help keep her in the right frame of mind for learning. You can't learn if you don't feel right. She should have a tool box available from which she can choose something that helps her self regulate such as brushes, a cd player, you know what I mean and they need to become more proactive. It's much easier to do this stuff at school than it is at home. It doesn't sound like a "behavior" per se, the behavior happens as a result of the discomfort she is feeling.

Good luck tomorrow
Lisa

[peglem]

We paid dearly for a consultation with an advocate last Thursday. She's basically told us to ask them to give us PWN on anything we request that they refuse to provide. And yes, stop the meeting if we have too many problems and want to wait til our advocate can meet with them. Its not just this issue that we're dealing with-
I think Allie does have some sensory problems, but much of the time, I think its task avoidance because she's so sick of doing the same things over and over.

[Aspigander]

Peg, I'm about to work on a more detailed reply on something you said a few posts back, but what is PWN?

[Aspigander]

There have been many, many times where she will pull me on top of her to hold her down. It appears to me that she wants help with it.

You know, that has me thinking. I'd mentioned in a post back on page 2 of this thread that sometimes I'll tend to go into survival mode during a meltdown. I've always thought my 'survival mode' happens when my mom is trying to get away/not wanting to resolve the meltdown inducing issue (understandably -- you can't resolve much when the person you're trying to talk to is not rational, which I'm not while melting down), but now I'm wondering if it's a bit more involved than that.

I'm wondering if the increased anxiety I feel that puts me into that 'survival mode' when she tries to retreat is from me wanting someone rational on the scene while I'm having a meltdown. Unfortunately, though, it backfires because she's not overly rational when I'm anxious and/or melting down, and perhaps the reason that I do eventually calm down once she's out of the picture is because I don't have her own anxiety adding to the meltdown anymore.

Just thinking out loud there. When you mentioned Allie's behavior seeming to want your help, I'm wondering if that might be why I go into that survival mode. Any thoughts?

[peglem]

PWN=prior written notice, which sounds stupid when you consider the fact that the written notice is not given prior to the refusal, but after. Just one more thing that doesn't make sense, eh?

[Aspigander]

Perhaps it should be post written notice, since it comes post-refusal.

So basically you're asking them to write a rationale for their refusal?

[roadracer]

I looked up sensory diet, I have used a lot of those methods and tools before. Like Lisa said, I think she needs a 'tool box' avalable. Even if you dont think her sensory problems are that bad, I still think the tools used for the sensory diet will really help a bunch because I am thinking they would be calming to almost anyone who used the them.

For instance I never leave the house without my mp3 player, I always have it in a pocket (they make them tiny now day) so if things start to build I can throw on the ear phones and calm down to some Neil Young. My next step up is ear plugs, when I need quiet, I throw in some ear plugs. While at home I got the aroma therapy stuff, music, relaxation cds, the led light, also got a weighted bear on my bed. And since I chew on things often, like my shirt, I gave up the chewing on pens, and chew on these things called 'chewy tubes'. One has bumps on it and it is the best thing for me when I am tense and get the urge to chew on something. I used to chew my fingure nails till they were bloody, was able to stop that by using the chewy things. You would believe how many little things make a big difference, like seamless socks and just wearing sandles most of the time.
So even if she does not have sensory problems that bad, I still think Lisa's advice will help so much

[roadracer]

a bunch of activities
http://www.mindspring.com/~dgn/sensory.htm
http://www.sensory-processing-disorder.com/sensory-integration-activities.html

[peglem]

You know, that has me thinking. I'd mentioned in a post back on page 2 of this thread that sometimes I'll tend to go into survival mode during a meltdown. I've always thought my 'survival mode' happens when my mom is trying to get away/not wanting to resolve the meltdown inducing issue (understandably -- you can't resolve much when the person you're trying to talk to is not rational, which I'm not while melting down), but now I'm wondering if it's a bit more involved than that.

I'm wondering if the increased anxiety I feel that puts me into that 'survival mode' when she tries to retreat is from me wanting someone rational on the scene while I'm having a meltdown. Unfortunately, though, it backfires because she's not overly rational when I'm anxious and/or melting down, and perhaps the reason that I do eventually calm down once she's out of the picture is because I don't have her own anxiety adding to the meltdown anymore.

Just thinking out loud there. When you mentioned Allie's behavior seeming to want your help, I'm wondering if that might be why I go into that survival mode. Any thoughts?

You may be onto something there. I have trained myself to be absolutely calm no matter what Allie does...most of the time(I feel awful about it when I don't). My getting upset only adds to the anxiety. Mostly what I see (and this is my best guess after years and years of dealing) is that Allie is terrified when this happens to her, and like a wild animal, strikes out w/o thinking (they don't call it flight or fight for nothing). It took me awhile (too long) to figure out that Allie doesn't want this to happen. When I did, I talked to her about it (one of the few times I think she really paid attention to me) and I promised her I would do anything I could to help her and that when she gets upset she should come and get me and I'll help her stay safe. Sometimes, coming to get me looks like coming after me, but She started that after our conversation (previously she'd just fall to the ground and go at it) so I know what she's trying to do, even though her body isn't cooperating. We also have a "safe place" here in the house-padded on back and sides where she knows to go to. I focus on what she's doing right during the episode. When she goes to the safe place, I tell her what a good idea that is. Any attempt at stopping or resisting the impulse to injure is recognized. And when its over, I tell her she sure is getting good at calming down. All this has greatly reduced the length of episodes. They could go on for hours before I started trying to help her get things under control.

So, it could be that you are kinda seeking the comfort and security of your mom, like when you were and infant. I'm not calling you a big baby-I'm saying this is how we all learn to self comfort-through that mom (okay and dad) interaction when we are very young.

[peglem]

I wanted to add: Many times when Allie is hurting me during an episode, I'll say softly, "Go ahead and hit me if that helps you calm down." That makes her stop hitting me usually. So i wonder if she even knows she's doing it before I tell her.

[Aspigander]

You may be onto something there. I have trained myself to be absolutely calm no matter what Allie does...most of the time(I feel awful about it when I don't). My getting upset only adds to the anxiety. Mostly what I see (and this is my best guess after years and years of dealing) is that Allie is terrified when this happens to her, and like a wild animal, strikes out w/o thinking (they don't call it flight or fight for nothing). It took me awhile (too long) to figure out that Allie doesn't want this to happen. When I did, I talked to her about it (one of the few times I think she really paid attention to me) and I promised her I would do anything I could to help her and that when she gets upset she should come and get me and I'll help her stay safe. Sometimes, coming to get me looks like coming after me, but She started that after our conversation (previously she'd just fall to the ground and go at it) so I know what she's trying to do, even though her body isn't cooperating. We also have a "safe place" here in the house-padded on back and sides where she knows to go to. I focus on what she's doing right during the episode. When she goes to the safe place, I tell her what a good idea that is. Any attempt at stopping or resisting the impulse to injure is recognized. And when its over, I tell her she sure is getting good at calming down. All this has greatly reduced the length of episodes. They could go on for hours before I started trying to help her get things under control.

So, it could be that you are kinda seeking the comfort and security of your mom, like when you were and infant. I'm not calling you a big baby-I'm saying this is how we all learn to self comfort-through that mom (okay and dad) interaction when we are very young.

Fortunately, for me, we don't have to worry that I'll self injure. But I think it might be the same concept (looking to mom for security). Actually sometimes I do think I want the presence of someone who is completely rational and grounded when I am not.

Since my mom can't seem to remain that way during an episode (I think my anxiety is contagious), do you have any ideas for dealing with meltdown without going into survival mode when she goes to retreat? Retreating can also be hanging up the phone (and not answering a call back) if we're not actually with each other but talking on the phone (which, ironically, I've been known to do on occasion). I'm just wondering what a next best thing might be, since having that rational grounded presence doesn't seem possible (not to mention I'd like to be able to get myself recovered without needing someone else anyway).

[Aspigander]

I wanted to add: Many times when Allie is hurting me during an episode, I'll say softly, "Go ahead and hit me if that helps you calm down." That makes her stop hitting me usually. So i wonder if she even knows she's doing it before I tell her.

Hmmm...that's interesting. I wonder if you're onto something, that she may not know until you say something.

You are very patient.

[Aspigander]

Speaking of sensory diet -- I don't think I have really bad sensory issues (some, but I don't think bad enough to be the source of meltdown), I wonder if something like that might help with the anxiety? Maybe I should look into that.

[peglem]

Fortunately, for me, we don't have to worry that I'll self injure. But I think it might be the same concept (looking to mom for security). Actually sometimes I do think I want the presence of someone who is completely rational and grounded when I am not.

Since my mom can't seem to remain that way during an episode (I think my anxiety is contagious), do you have any ideas for dealing with meltdown without going into survival mode when she goes to retreat? Retreating can also be hanging up the phone (and not answering a call back) if we're not actually with each other but talking on the phone (which, ironically, I've been known to do on occasion). I'm just wondering what a next best thing might be, since having that rational grounded presence doesn't seem possible (not to mention I'd like to be able to get myself recovered without needing someone else anyway).

I don't really have any idea what you can do to self soothe. This might be something you want to explore with your psychologist.

[tgrimes]

Thanks, Lisa. That's in keeping sort of with what we are doing when a meltdown happens-trying to set up some kind of regulatory pattern- swaying while hugging, clapping or tapping, familiar song, where we stop for her to supply the next word, anything rhythmic seems to help bring her out of it. The school has not identified sensory issues as a trigger (although I know sometimes they are for her). But her Iep meeting is tomorrow (EEEK!), so I'll bring up a sensory program for her. Implementing regulatory patterns in the midst of meltdown is difficult because you will get punched, kicked, bitten, pinched and head butted in the process. But, a sensory program may help to reduce # of incidences.

Pegs,
I was remembering some stuff today, about what things were important in dealing with this, what made sense and what didn't, so I just want to add a couple more things but keep in mind, they may have only made sense to me, so take it with a grain of salt.
I told you earlier there is an 'afterphase' that seems like he is all washed out, no energy, defeated sort of thing, you mentioned a while back that did not happen with Allie so this may be different. I see a lot of similarities with this and my own disorder, so you get the idea, that may be his true Dx and we still don't know. But before that even happens, that's what I want to talk about, there are still two things you might want to separate:
1. Duration of self-injury episode... if you are there, and she allows you to be there, good. She obviously directed some of your actions you already use in this part.
2. Beginning to stop ... this is maybe important for you to use discretion on what to do then, because you may want some of those positive things you do to happen then, and not before this time. The reasoning is simply to not have the same things introduced during a strees response, lest they eventually become a trigger in their own right.
For instance, we used the bath and certain aromas (bubble bath, and the scent of baby wipes) to try overwhelm the senses or distract, but it later became clear (as he 'helped' me get it, as Allie is helping you) that those things were not supposed to be introduced until some sign of progress. I guess he was showing me that his true comforts were to be reserved for just that, and not something to associate with stress.
Hope this makes some sense, on what you choose to use and when.

[Nikabee]

I know I'm late jumping into this, but I agree... it's such an important topic and most people don't want to deal with it.

One thing caught my attention: you said that Allie pulls you on top of her sometimes? Would that be a need for deep pressure or for restraint? Maybe a bit of both?

I've noticed that after melt-downs, Kaelen often seems truly horrified by the damage he's done... like he was not aware of what he's doing. He has quite a range of melt-down behaviors - both self injury and aggression toward others.

One thing I thought I'd share: I really think that they look to us for security when they're out of control. Kaelen's VERY verbal (a blessing and curse, sometimes). Once, when I was starting 'lose it,' he said "GREAT! Now nobody's driving the bus!" and stormed off. That was an 'ah-ha' moment for me. It's terrifying to me sometimes to watch him so out of control and not 'himself.' But I think it's just as terrifying to him. They need us to be their anchor and safety net when they're ready for it.

Anyway, that's just my .02 worth.

[roadracer]

Oh, I almost forgot the most important part (at least for me) is that after feel so horrible about how I acted. I know that I shouldn't act like that so I really feel bad after, especially if I did something I regret. I never want to get like that and would try anything to avoid loosing control. That is why even that I have the fear of meds I tried it anyway those couple times.

[peglem]

One thing caught my attention: you said that Allie pulls you on top of her sometimes? Would that be a need for deep pressure or for restraint? Maybe a bit of both?

I'm guessing restraint, just because I don't really put my weight on her. Its more of a straddle. (*heh* I'm not so in shape as I once was.)

I wish I'd caught on as quickly as you did....we used to really handle it as though she was misbehaving. It took finding out that Disneyland is NOT the happiest place on earth, for me to figure it out.

[roadracer]

It took finding out that Disneyland is NOT the happiest place on earth, for me to figure it out.

okay now I understand why my family would never take me to Disney. It always botherd me because aunts and uncles and cousins would all get together and go every summer, but I was never invited. That always hurt my feelings, but after reading your post it occurs to me that I probably would not have enjoyed it and it would have been one big lond sensory meltdown.

[Aspigander]

Just reread something and had to ask a question:

maybe a weighter or pressure vest

What are weighters and pressure vests?

[peglem]

Oh, Allie loved Disneyland. "The incident" was on her third trip there. Let me see if I can find the post where I explained. I'll get back to you.

[Nikabee]

It took finding out that Disneyland is NOT the happiest place on earth, for me to figure it out.

That's sort of like my theory that Satan owns Chuck E Cheese's? :D

What are weighters and pressure vests?

Those are sensory tools (like ankle weights or a vest/blanket with heavy weights sewn in) used to provide the feeling of deep pressure, which is soothing and helps you feel 'anchored'. Just like using an anchor when you dock will keep your boat from drifting away uncontrollably, these tools help you keep control over your body.

They also help with proprioception (kind of the same thing, really), which is how your brain understands where parts of your body are, in relation to the whole. For instance, if you can close your eyes and clap your hands together in front of you - that's using the proprioceptive sense. Or, closing your eyes and touching your nose with your finger. That information is sent to our brains through the joints and tendons in our body.

Does that help or did I just make it more confusing? lol

[roadracer]

Just reread something and had to ask a question:



What are weighters and pressure vests?

http://www.especialneeds.com/product.php?productid=1451&cat=11&page=1
http://www.especialneeds.com/weighted-blankets.html
http://www.especialneeds.com/sensory-motor-weighted-vests.html

Pegs, that website has a hundred different sensory things to try

[roadracer]

I want one of these, I wonder if it would be strage for a adult to have one of these on there bed (asking a guy who has a weighted plush bear, lol)
They make it in size 3 foot by 6 foot, plenty big enough for me
http://www.especialneeds.com/tumble-forms-2-weighted-blanket.html
I can already feel my body craving it, sort of like was said about rolling up tight in a blanket, I do that often while trying to go to sleep.

[Aspigander]

I want one of these, I wonder if it would be strage for a adult to have one of these on there bed (asking a guy who has a weighted plush bear, lol)
They make it in size 3 foot by 6 foot, plenty big enough for me
http://www.especialneeds.com/tumble-forms-2-weighted-blanket.html
I can already feel my body craving it, sort of like was said about rolling up tight in a blanket, I do that often while trying to go to sleep.

Color pattern on that thing might be a little strange for an adult, but if it works, go for it.

That reminds me, I wondering if I'm doing the same thing there with amount of blankets I use on the bed. There's one sheet (covering me, not counting the one on the mattress), two regular blankets, and a big comforter. Even in summer. I might try throwing those off during summer nights but without fail I'll pull them all back over.

[peglem]

Oh, Allie loved Disneyland. "The incident" was on her third trip there. Let me see if I can find the post where I explained. I'll get back to you.

Here's the thread with my Disneyland post:
http://brain.hastypastry.net/forums/showthread.php?t=4427
Its #7

[roadracer]

Here's the thread with my Disneyland post:
http://brain.hastypastry.net/forums/showthread.php?t=4427
Its #7

Oh, okay, she lost it because she couldnt get to the bathroom, but it is great that crowds dont bother her because you know what, at 25 I would have had a bigger meltdown then that being in the middle of that crowd, I wouldnt have been able to handle it!!!! They would have had to take me out of there in a ambulance giving me oxygen and everything because in a crowd like that I would been so panic/meltdown to the point that I probably would have passed out.

[peglem]

Oh, okay, she lost it because she couldnt get to the bathroom, but it is great that crowds dont bother her because you know what, at 25 I would have had a bigger meltdown then that being in the middle of that crowd, I wouldnt have been able to handle it!!!! They would have had to take me out of there in a ambulance giving me oxygen and everything because in a crowd like that I would been so panic/meltdown to the point that I probably would have passed out.
It sure would have been easier to get her out of there if she had passed out.
She lost it because she thought she couldn't get to the bathroom. Most children, even much younger than her (she was 11 at the time) would have just checked with their mom and known everything was okay.

[Aspigander]

Is there a such thing as a meltdown that causes one to pass out?

[peglem]

I don't know, but When Allie was @ 2 years old, she'd drop into a deep sleep if she encountered a place with sensory overload- like ChuckieCheese Pizza. All those games with flashing lights and the noise from the crowd and the smell of the pizza. Within about 3 seconds, she'd just shut down with her face in my shoulder a be in a deep sleep. That's where I'm headed now, too. Deep sleep, that is.

[Nikabee]

I don't know about 'passing out' either, but like Peg mentioned - Kaelen sleeps in the most unusual places and times when he's overloaded. I just think it's really exhausting to deal with all of that. After most meltdowns, he either 'zones out' or sleeps.

[roadracer]

Is there a such thing as a meltdown that causes one to pass out?

okay, so I have never passed out in public because of a meltdown, but I can say it fealt like I was going to pass out before, probably from the high level of panic being in the middle of a crowd like was described would cause for me.
I REALLY panic when in a crowd, a crowded store will have me runing for the exit. Do you remember me telling the story about falling over at the start line of a bike race because of the crowd watching me caused me to panic?

[Aspigander]

Yes, I do remember that story. So you felt like you might pass out?

[Nikabee]

I can say it fealt like I was going to pass out before

Ok wow, that's pretty interesting to me. I wonder if the sensation somehow causes or is linked to the meltdown behaviors? Kaelen describes the lead-up to a meltdown as speeding toward a brick wall and then he hits it and loses control. Could the 'speeding' sensation be like the feeling that you might pass out?

People usually pass out when there isn't enough oxygen getting to the brain... that's what gives you that 'sensation.' I wonder if something might be happening physically with the oxygen levels that would lead to the meltdown. Obviously when we we're panicked, less oxygen gets to the brain... but not all of Kaelen's meltdown are because of panic (that I know of)...ok, it's late and I'm just rambling now. Does any of this make sense? lol

[roadracer]

yep makes sense, I guess I should have said that that type of meltdown panic from being in a crowd is different from my normal meltdown.
Normally it sensory things that build on me, and keep building to it is over loading, and I go into a meltdown, usually requiring me to get to some place quiet to calm myself down. Sometimes if it is really bad I injure like I talked about, to stop it
The crowd thing is more panic I guess, and the panic causes me to breath hard and feel light headed. I dont get like that during a sensory meltdown
To add to it when I loose my temper it is somewhat different then the sensory meltdown mode I go into. When I get pushed to loosing my temper, and it does not happen to often, that is the worst times because I dont care if I hurt myself and can really hurt myself with the biting and puching walls and head banging walls, etc. Normally during a sensory meltdown I try to stop myself from doing those things, but at the most during the worst times I bite myself, but I have been working on trying to stop it. The worst times I loose me temper I can look like I was in a fight with someone, but that is rare

[Nikabee]

Ah ok. Thanks for explaining the difference to me. Sometimes I just wish I could crawl inside his body so I could know what he's feeling and be able help. But then, it would probably scare the crap out of me! He's much tougher than I am. ;)

[Kristen (ColeysMom)]

I'm going to quote more from this book Pegs...

In Survival Strategies for Parenting Your ADD Child, I suggested that AD children tend to "stalk reactions" from adults. They are driven to annoy people because, faced with their inability to maintain attention and happy mood, getting in a hassle with an adult is preferable to living with the feeling of isolation. A high degree of interpersonal emotionality raises adrenaline and gives one a sense of power and control. Unfortunately given the tendency the AD child has to instability, once his adrenaline levels begin to rise, he may have little ability to calm himself down - he becomes a guided missle with no recall capability.

This thread is VERY interesting to me and I'm hanging on every word, but I have little if anything to add...hope this offers something...forgive me if it's way off...