Question, searching for what this might be?

[Tiapet]

So difficult child #2, middle 15yo, has this habit of controlling or rather trying to control every one and everything in her life/world. This goes across all boarders including at school. To give you an idea of how it works:

Some one does something, she tells about it, whether it's an adult or child, teacher, parent, sibling, etc. - kind of like tattling or ratting everything out even if there is absolutely NOTHING wrong with what the person did she feels compelled to report what the person did. It could be if "SHE" thinks they did something wrong, or if they should have been doing something and they weren't or if they did something and it wasn't the way "SHE" thinks it should be done (even if it's the way it should be done by the way of the world order).

God forbid you tell her about anything, such as we "might" do A she believes you said you WERE doing it for sure and then she goes off that you said you were doing it and all out battles begin. Or if you say we are doing something but not until such and such time, she will freak out and bug for hours before about it consistently every 5 minutes (or less) until it happens and when it gets close she starts getting nasty that you aren't doing it or getting out the door RIGHT THIS MINUTE when you don't need to leave for at least how ever many minutes. You could be in your room and she will bang on bedroom doors first thing in the morning waking you up telling you that you are going to be late (such as for an appointment) when you have a half hour or more to go and not stop doing it until you come out. In the mean time you may be trying to get a shower, etc.

She takes inventory of everything - in the house, in school, etc. She knows what is there and when someone takes something and I just don't get it. I mean when it comes to food, since she is food obsessed it kind of makes sense because she "thinks" all food is hers whether it is or not and she always wants everyone else's food whether she is entitled to it or (she will steal it even if it is locked down at times). She freaks out if someone takes something even if they are allowed to or entitled to it, etc.

She orders people around and tells them what to do, including the adults (us). She will NOT stop this under any circumstances. We have found nothing, NOTHING! that stops her. She is so out of control of herself yet is trying to control everything else. It is funny, well not funny to me that this is so. How can someone who can't control themself even think about trying or wanting to control anything else, let alone adults/parents/teachers? I believe perhaps this is exactly "why" she is maybe doing it, that she is so out of control and is trying to control "something" since she can't control herself but instead is trying to control EVERYTHING.

The doctor either isn't listening to me about this or doesn't seem to care about it. Her worker has seen it. She literally does hold this house hostage with all this control.

So, do any of you have any thoughts about this and what it might be? I don't think I've ever seen anything like it before and it's getting worse as the days, weeks, months go on. It's just got to stop or we've got to do something about this because none of us can live like this. I think I've told before about how she makes lists in school about what the kids in her class (sped class) do wrong and then gives to the teacher (ie: this one did this and he's not suppose to be and he did it this many times), she also tries to "teach" the class under the disguies of "tutoring" kids (as if the teacher can't teach SHE can right in front of the teacher and presented as such) and gets all huffy that they "HAVE" to have this and SHE MUST get to school early/stay late to "help" (which we never have her do). It's pretty serious.

 

[keista]

OMG! Sounds like a VERY INTENSE version of DD1. IOW I'm thinking Autism Spectrum Disorders (ASD).

The obsessing about events/items is perseveration to the nth degree.
Constantly correcting/reporting everyone else is black and white thinking pertaining to "rules" Of course, it is her perception. This especially becomes a problem when a rule is made, eg no gum chewing, then a classmate chews gum, and there is no punishment. She probably really freaks in such situations. It's because she doesn't understand the subtleties of "exceptions to rules" or allowing ppl some leeway. the rule is the rule is the rule, and she feels the need to report/enforce it.

Words like might, maybe, possibly just do not register. They are much too vague. Try not to use such words. Even if she asks for something, it's better to say that you can't make that decision at the moment and simply will not respond right now. Something like that has a much lowere likelyhood of causing her to jump straight to the "it's a go" conclusion.

Rushing you on appointments: Need to create visual schedules. Include things that you need to do to get ready, and the approximate times it takes. Couple this with constant assurance that you are on top of it and if there is a delay you will take responsibility for it.

 

[TeDo]

I agree with Keista. Autism Spectrum Disorders (ASD) is the impression I got too, heavy on the obsessive.

 

[Tiapet]

Thanks. I have thought she displayed some of this but she has so many other things going on and I do believe so many diagnosis overlap too. Like she has BiPolar (BP), ADHD which is has a very inattentive feature to it (go figure!), of course ODD (or is it?), her eating disorder not otherwise specified, and suspected BI. She does obsess on other things so I was thinking she has some Obsessive Compulsive Disorder (OCD) in there but again, diagnosis overlap so it's hard but we've just found nothing that is helping her.

I have written things down for her and I do remind her that I am aware of time and I will take care of and be responsible for everything but it's not enough. I do also try never to say the might or maybe because as a general rule, none of the difficult child's can handle anything other then black or white thinking nor sarcasm type stuff. Figures of speech also isn't understood too well.

You know the saying "forcing a round peg in a square hole"? That's like what she is doing with everyone/thing in life and it's gotten so crazy around here it's unbearable. The other thing I should mention is that when you point out to her her entitlement issues like this is she jokingly/seriously calls herself "queen of the universe"! On some level she seriously does believe it and tries to act upon it. I'm so sure Autism Spectrum Disorders (ASD) kids would do that would they?

 

[keista]

Yeah, they would and they do. As always, there are exceptions to the rules, but Autism Spectrum Disorders (ASD) kids (high functioning ones at least) are generally VERY self assured and self confident and think they know EVERYTHING. Superficially and to a small degree, this can be mis-identified as the grandiose thinking of BiPolar (BP). in my opinion and experience, in Autism Spectrum Disorders (ASD) it's more realism-based.

For example, years ago, DD1 was once complemented on her singing while we were shopping. Immediately she considered herself a GREAT singer. She's a good singer with a pretty voice, but she's far from GREAT at the moment - she needs to put in a lot of work on many facets of her singing. If when she does, I do think she can become GREAT. in my opinion and experience, this is very Autism Spectrum Disorders (ASD). However, if she pushed it further to believing that she was 100% STAR QUALITY at this very moment and it was my fault that I was denying her the opportunities to be discovered NOW, I'd categorize that as the grandiose thinking that is characteristic of BiPolar (BP).

Yes, it could be Obsessive Compulsive Disorder (OCD)/anxiety issues. You could try anti anxiety medications to try and quiet some of these behaviors. Paxil did work for DD1, especially for her social/stranger anxieties) until things just went bad with that medication.

And yes, the problem is that these all overlap, and it could be all at the same time as well.

 

[DammitJanet]

Actually this sounds a whole lot like Cory! I wonder if Cory could have Autism Spectrum Disorders (ASD) traits? Hmmm.

Cory has always been one that we could never say "maybe" to because that would automatically mean yes. If he heard us even talking about maybe going somewhere he would be convinced we were going there and would bug us to death. Half the time he had not even heard us correctly. He still tries to control things that he has no business controlling. This is one of the big problems on the job. He has his nose in everyone else's business. He needs to mind what he is doing and let his father run the job but instead he wants to tell his dad what should be done. Not good.

He has some issues controlling himself but he wants to watch what is going on around him. Sigh.

 

[whatamess]

It sounds like Asperger's, Obsessive Compulsive Disorder (OCD) or obsessive-compulsive personality disorder (which is different than just Obsessive Compulsive Disorder (OCD)).

 

[helpangel]

If I get a vote it sounds like Asperger's to me too the everything black/white (no gray), letter of the law, manipulating everything that's every kid diagnosis'd Asperger's I've seen besides Angel; she does some of that stuff but way too much gray area with her.

But when I look at those diagnosis's in signature - was a neuropsychologist evaluation done on her or did those come from a psychiatrist? psychiatrist's tend to give symptoms diagnosis's more then look for underlying cause, at least been our experience. All those diagnosis's could be symptoms of bipolar and unstable bipolar kids tend to try to manipulate their entire environment to make it more user friendly. It's like since can't control inside their head they try to control everything around them.

Who knows? all kids different; but that's my opinion. Good luck getting to the bottom of this can imagine it's getting annoying.

Nancy

 

[ksm]

. All those diagnosis's could be symptoms of bipolar and unstable bipolar kids tend to try to manipulate their entire environment to make it more user friendly. It's like since can't control inside their head they try to control everything around them.Nancy

Your sentence about trying to control everything around them really fits what is going on with our difficult child. She is 14 and she wants to tell everyone where to sit at the table, who gets to sit in the front seat (always her!) what food we should have for supper, how to spend our money, etc.

Just 5 minutes ago, I woke the girls up for church and told them I had made baked Amish oatmeal with apples and cinnamon for breakfast, and her response... why can't we just have plain oatmeal sometimes? Duh. I have fixed baked oatmeal twice this year!

Sometimes she will get an idea in her head... and then runs with it. She will then bring it up and when we make some changes as to what will actually happen, it is a melt down, as in her head, it was supposed to be... "go to the mall, stop for ice cream, go to a movie" But maybe what she is offered is "stop by Target, then grocery store to buy ice cream, and then watch a movie on netflix." Of course all her plans involve me spending my money on what she wants... not her spending any of her money for what she wants.


I do worry about bipolar... as her biomom is bipolar. I really do think we will get to that diagnosis eventually, but it seems like therapists only want to give "symptoms" and not diagnosis.

Sorry I am venting too. Wish I had answers! KSM

 

[helpangel]

And heaven help you if the store closes while you deal with the flat tire that wasn't in the agenda in the kids head. I think that's why none of the sticker charts or reward programs worked here, Angel gets so hyper focused on the reward she totally misses what she has to do to earn it. When she gets in "mission mode" she often gets tunnel vision and anything deters her from mission is often met with aggression.

This thread has the potential of getting huge because every parent of kids diagnosis bipolar or on the spectrum is going to see many things their child is doing here - Angel been diagnosis both I could have written that post a couple years ago. I've been looking at this thread then looking at my kid wondering what's bipolar & what's Asperger's (never did figure it out) but I spotted a place I really dropped the ball, the past couple years I've been focusing on treating her bipolar and pretending the Asperger's didn't exist - this thread was a good reminder to me to stop focusing on one disorder and look at whole kid. The only disorder or diagnosis Tiepet listed that Angel has not had at some time was eating disorder (yet a few years back had to padlock the fridge, wonder if we missed one?).

I still think a neuropsychologist evaluation would be a good idea Tiepet is correct on a couple major points; a lot of these diagnosis's have overlapping symptoms & this is affecting every aspect of kids life and the entire family. The behaviors she listed and the term "square peg in round hole" has me thinking on the spectrum is a good place to look for answers, but this could be so many different things I was wrong to speculate on a diagnosis.

In the back of my mind I'm kind of hoping this is just a very strong willed child with leadership qualities who refuses to follow anyone; don't think so but we can always hope.

Are there any food sensitivity issues going on? I know very basic but sometimes with each new discovery I've had to go back to square one and reexamine things that were previously ruled out. Hereditary info, medical rule outs, environmental etc. Hope you get some answers soon I've lived with a kid like this for over 15years and can confirm its a real PITA

 

[keista]

The only disorder or diagnosis Tiepet listed that Angel has not had at some time was eating disorder (yet a few years back had to padlock the fridge, wonder if we missed one?).

It's possible you didn't get a separate eating disorder diagnosis because it was just assumed it was part of the Asperger's.

I also find Tiapet's list of dxes interesting because is does seem to be more a list of symptoms but when looked at together could be something else.

 

[Tiapet]

For us, it's far more then strong will and no leadership skills. She can not lead by any means. She can not problem solve at all. She follows any and everyone and if it's a bad thing, she surely picks it up and does it as well as copy cat things. She tends to be a hypochondriac with everything always wrong to the point that at times it's dangerous. Like with medication side effects. Because I I have to take a wait and see approach with her, this is where the danger is. She failed all 3 mood stabilizers. She has basically failed many medications. The only things we have her on now is a stimulant to control the ADHD symptoms (and we can't use any other or change dose or she gets a tick or another medication doesn't work) and clonidine for sleep, which doesn't even always work properly because she can't always get to sleep good and surely doesn't always stay asleep and that I think is mostly because her brain is always "on" in foraging mode because she will always come down through the night rummaging for food. I think it's now trained to do so and that's why she wakes up as it's the only thing she does when she gets up. We have no other options on medications it seems.

The brain injury is the complicating factor as it has yet to be officially diagnosed. I "know" that it must be there because cognitively she just doesn't get so much that she should, her brain just doesn't process things right at all. It's like dealing with a child of 15 who has some MR issues yet on paper she doesn't (as in psychological testing). This all breaks my heart because she is always (underlying) a sunny dispositioned child since birth, very sociable (I call her a social butterfly) and people are naturally attracted to her because of this. But the darker side that the general world does not see is the rages, the anger, the horrendous mouth and attitude we get at home (the workers see and she will display this in public when we are out). The school and peers can see the controlling however. So she CAN control the raging and mouth (though she will get into it with peers at times-ie bullying) at school! She gets angry at school but will not let it out like she does at home. I get that she feels "safe" to do so at home.

As for the Obsessive Compulsive Disorder (OCD) thing too, it's funny to the worker that at school she must organize and have her classroom and things perfect and clean but at home, omg, the house is a cluttered mess all over the place! Generally the mess in the house (what causes the house to be a mess) is from her. What ever she drops (clothes, books, dishes, etc) or does she creates a mess and just leaves right then and there. You can literally see where she has been. Her room.....looks like a hoarder lives in it! No joke! I can't tell you how many times we've cleaned it out only for her to accumulate "stuff" again. She collects things like crazy. I'm about ready to bring her down to 5 outfits of clothes and ditch the rest as I can't stand it anymore but then there is hygiene issues and well....I can't. As it is she has to have her mattress and box spring on the floor because of her hoarding of food and even that is risky as she stuffs food under that too. We've had pb&j smashed into the carpet under that! EWWW. A dresser in room? She doesn't even used it! Clean clothes she will take up and literally just throw on floor. If I have her keep them down here then she rifles through them and they scatter all over the house.

The issues are really far too many. I'd probably end up writing a book over it. I try to appreciate the good things about her each day and make it through to the next. I try to give her opportunities each day to reach for new things as well. I'm trying to get her to "earn" things she wants instead of demanding everything but of course that is not working either as she (and I hate using the word) is lazy. She expects everything to be given to her and when others are getting stuff through earning she gets seriously jealous.

 

[helpangel]

OMG Tiepet it's like you are standing next to me looking in Angel's room right now, I started reading out loud and she even walked over here to see if I had posted that about her LOL

Now that she is back to what she was doing yes I get it - I run out of spoons? her room! open drawers and find all kinds of science projects or follow the fly's or smell in there to locate source.

been there done that I often think she believes the entire world is just here to service her, no wonder the siblings mockingly call her "princess Angel" more like "queen" if ask me and anyone doesn't please her she wants to yell "off with their heads" - guess I should just be greatful we don't have royal blood and its not a couple centuries ago.

:queen:

 

[Tiapet]

We do lovingly call her "your royal....what ever word comes at the time (could be princess or queen)" from time to time and she will laugh. Like yes your royal.... other times we use it as in "you are NOT the queen of the universe". It actually got started, this particular phrase due to the fact that she would always end her phone calls to her boy-friend (not boyfriend) with that phrase. We adopted it hence why we get away with it. But I'm telling you she started this long long ago when her and her little brother was very little. She would "pretend" (though we now know it wasn't so pretend) that she was the princess and him her slave and make him do all kinds of things for her to the point that at one time she had him crawling around on hands and knees with a leash and collar attached like a dog! I'm not kidding either!! That was about when they were 6 and 7 respectively I think. She has claimed a loveseat in our house that absolutely is hers and there is a hard time getting her to get off of or even share a space for anyone else to sit on. Luckily we do have another couch. There is a mess all around that loveseat and a tv tray that she leaves up and it's all hers. Some things may get replaced and moved but the mess is hers and boy does she lounge on that like it's a queen's throne. She will even lay down and eat at times (and I have to yell at her to SIT up) as WHO lays down and eats? I can't even think about how hard it is to do that and swallow? Just another sign of how lazy she can be sadly.

As for the diagnosis', I don't necessarily believe all of them. I believe she displays symptoms (like some of you said) and I know there is family history of some of it. I just am not sure that she actually HAS these things. I don't know how we will ever be able to stabilize her moods since she failed the 3 main mood stabilizers due to side effects (all had pretty much the same effect on her, some with far worse ones). Of the effects it has to do with her "brain" and what it did physically too. None of them should have done that. Thank god she will be going to a Neurologist as soon as the referral is done. I just hope it's a good one as we won't have any choice to go to another if not.

The other factor in all this is that she was born with some genetic orthopedic issues. I do know that some of the kids born with these "sometimes" also have issues to. Is there a common thread? I don't know. Another factor I learned about 2 years ago regarding exexecutive functioning skills is that there is a link to problems with it and schizophrenia (and perhaps there is another link they don't know about?). The reason I brought this up is the link is also linked to a blood disorder she carries from me. It's relatively rare and ours is a double strand in the DNA which makes it even rarer.

I swear, if I don't come out with some sort of doctorate in medical/psychology stuff with whole families information and struggles that I've dealt with in my life time...well I should have! I've learned so much stuff that the average person would never know on the average lifetime. We are one complex family on both fronts! LOL

 

[keista]

She will even lay down and eat at times (and I have to yell at her to SIT up) as WHO lays down and eats? I can't even think about how hard it is to do that and swallow? Just another sign of how lazy she can be sadly.

This is most likely a sensory issue. The only way I can make DD1 eat sitting up is to have her on a backless stool and away from the wall. Otherwise, she's leaning on the wall, leaning back, feet on the wall, etc. On the rare occasion I let snacks in the living room (like popcorn on a movie night) it's always eaten laying down. (by the way I LOVE snacking lying down, yes, I've got definite "traits")

 

[Marguerite]

This does sound very much like "everything around me seems out of my control, so I am just going to take control back so I can begin to predict what is likely to happen."

We've had a houseful of these. Even easy child has some of this in her, which made life interesting when she clashed with the younger, even more stubborn and Obsessive Compulsive Disorder (OCD) kids.

Your mention of suspected but undiagnosed brain injury, because she should be able to achieve at a higher level than she actually is - this is what we have seen in our three younger ones. They started out well but at some point simply failed to 'get it' at school. easy child 2/difficult child 2 especially was assessed at age 4, as being in the top 1% of the population. She was skipped a grade into K at age 4 and did well to begin with. Then at about grade 3 there were a few glitches starting up which at first seemed to be easy child 2/difficult child 2 trying to dumb down to be popular because smart was not popular. It took another two years for us to realise there was more to the problem, and another year before we could even begin to get answers. easy child 2/difficult child 2 has always been an extreme control freak (which is one reason she assessed as so bright when younger - she expended a lot of her intellect in learning fast, how to control people around her; she was very good at it).

Now what also concerns me - the wide range of diagnoses your daughter has had, plus the range of medications that have 'failed'. Sometimes a medication fails because the diagnosis is wrong. And in girls, it is often more difficult to get the diagnosis right, if it's on the autism spectrum in any way. easy child 2/difficult child 2 is now 25 (heading for 26) and we're about to get the neuropsychologist report handed down next week. The provisional diagnosis now is Asperger's. However, the shrink who finally said, "I think you need to be assessed for Asperger's," had only a month earlier insisted that it could NOT be Asperger's but was almost certainly bipolar. I could see why superficially the doctor thought bipolar, but easy child 2/difficult child 2's more detailed history shows the flaws in this diagnosis.

The thing is, we've been trying to find answers for easy child 2/difficult child 2 since she was 10. She had her first neuropsychologist assessment done when she was 4. When she was 10, the school did another one. And then there were smaller subtests done through high school, but we were never given the results. Just told, "my, she IS bright, isn't she?" but nobody asked why she was not achieving at her expected level.

So now she's 25 and we're (hopefully) finally getting a diagnosis.

I hope it doesn't take so long for your daughter, but I'm suspecting you've already been up and down the same garden path as us, several times over.

Oh, and I'm sure I needn't add that difficult child 3 ramps up this experience for us by several orders of magnitude. One kid left at home and we feel like his hostages sometimes.

Marg

 

[Bunny]

I often think she believes the entire world is just here to service her,

That's funny because I think that about difficult child sometimes. He wants what he wants and everyone else is just supposed to give it to him.

difficult child can be like this at time, but not to the degree that you child is. The therapist told me that with difficult child it's a way of dealing with anxiety. The more he can control in his world, the less he has to be anxious about. When things are out of his control he starts to get anxious, which ramps up the bad behaviors. Try as we might, he simply does not understand that not everything and everyone wants to be controlled by him, especially me! As he has gotten older it has gotten a little better, but I think that the medications help alot.