An Angry Vent about a doctor (long)

[Tiapet]

I sat on this overnight to think if I really wanted to post or not but I'm still aggravated and wanted a little feedback.

Yesterday we went to the developmental pediatric psychiatric doctor. Initially, based on last appointment, we were suppose to have ms queen just do some more simple test (whatever that meant and whatever there was left to even do at this point-academic stuff). So we get there and the doctor tells us to come in to talk to us, no queen, instead. Ooookay. Hmmm So she begins a discussion right off with how difficult child is on tenex and I said noooooooo. You remember the insurance wouldn't cover it? We went back and forth about that a few minutes with her saying yes but didn't we get that figured out and get them to cover it? ( at that moment I hadn't recalled that we did)
I was a bit peeved then because I felt it was irresponsible as a doctor to not have notes on what she does with the child's medications each and every time we change or do anything with medications. So I go a bit set off. She said well how about if I call the pharmacy and see if they will cover it because I want to try this again? Huh?

Then finally I remembered that we discontinued it because difficult child developed a tick from it so I told her that. I said it's in your notes, it should be there to look and see. It seemed she was relying on me to recall. So she did go through her notes and the only thing she found was regarding insurance not taking it.
By then I was really starting to get even more aggravated because at that moment I was still back at the insurance issue and her notes and her statements to me (really wish I could recall full detail of conversation now) because I felt as though "how stupid of me not to remember right" is how she was making me feel. Well I'm a parent of 3 difficult children, one that is graduating at the moment and in the middle of college stuff, a rental that is in foreclosure and faced with having to move by end of June, a SO who's been out of work since a year ago May 30th and no luck with work and not knowing where we'll move to at the moment "incase he gets a job-which could even be out of state let alone across the state", and medication that clouds my head/memory at times that details can get jumbled on the spot or overall. Isn't SHE the one who is suppose to have notes, legally, on what she does with medications? And "I'm" the one feeling like I did something bad?

So we move on to other things. We discuss how there isn't a label currently for ms queen and I brought up the fact that her CA teacher (the one in charge of her resource room) suggested that if she had a label of Autism that there was some social skills classes or supports that they could offer but only "if". So I asked this doctor, since at our last visit we discussed difficult child having "some" of the characteristics of autism spectrum but that she didn't feel she exactly had it, how we could access getting this from the school. She went on about how she didn't feel comfortable giving difficult child that label to get these services AND how...get this....since difficult child doesn't display any social issues (like they can't get along with anyone or don't like to be around people) and any Autism Spectrum children "always" display this, particularly before age 3 (difficult child does in the fact that she can't get along with peers appropriately-i.e. immaturity, has to be first, interrupts, etc..but didn't display it before age 3). Now someone please correct me if I am wrong but I believe that to be not true? No how could I get her to understand nor accept this what so ever. Remember, this is a TOP Medical Facility here in NC (so again, if I'm wrong PLEASE correct me!) She treated me as if I didn't know anything, which she should know better after talking to other staff that have dealt with me and the difficult children there. She even said Aspergers was the same rule of thumb?

Then she brought up the fact that she had talked to difficult children past therapist and how she had agreed that difficult child would have benefited if she went to this residential day school (which would have been 5 days a week and home weekends). Therapist knew that it couldn't happen due to exdh and legal issues involved. So she wanted to know how I felt on something like that. I had already discussed this with this doctor before as well and told her the same thing therapist did regarding the legal reasons. Why was she revisiting it? I told her I did, after our last conversation, go to him and ask about it and as I had previously told her, it WOULD be a legal issue should I try to do it. Again, no notes on this in her files (As I'm sitting there I actually was seeing no notes apparently in file just the normal stuff basically of prescriptions written, reports of tests, etc...).

We started talking about diagnosis then. And she referred to labels and such and I don't recall exactly what was said but it came across as though, via her statements, that she felt as though I wanted a label put on difficult child. I told her I do not want a label, that's not what I am looking for at all. I want to know how we can help her or access services to help her. That's all. So then she asked if they were following the recommendations made by the pscyhologist who did the overall testing there and I said for the most part yes they are but there are other services she needs and I can't get. Like more help in math. This child is basically getting by on D's in resource classes and yet they keep passing her along from grade to grade and think it's ok because it's not an F. How is this helping her to learn? She said she needs tutoring. I said I agree but the school said that difficult child is getting all the services they have as it is and they have nothing more to offer her. I also let her know that SO and oldest difficult child extremely capable of tutoring math since they are almost genius in that dept but that difficult child just can't seem to "grasp" how to learn it and "that" is the problem. Not so much the tutoring.Well then perhaps we need the help of the law depart of the facility (of where we are at) she says. Huh? I'm thinking again, how is that going to help difficult child get figured out how to learn? I said, well based on what I know about special education the school has to provide what the child needs as long as it can be demonstrated she needs it and MY concern, and the whole point here is to figure out how we can demonstrate that difficult child NEEDS these services since on her testing it's not apparent by scores but yet she can't do the work. For example, a word problem- she can't seem to grasp what functions to use to solve it. In simple math she has just NOW been able to get to solving but don't set up a number problem that involves too many numbers like 345,897 + 34589= or 8765x3454= because she won't be able to do it well. For the multiplication she will sometimes add the problems or multiply it backwards almost like having dyslexia but she doesn't have that (she's been tested). And algebra...omg...no way could she understand equations and that will become a mandatory class. Money? She still doesn't understand money denominations properly or how to maneuver equations on that! This is passing a 6th grader???? So when I told this doctor what I knew about special education and what school has to provide she says "do you have a degree in special education?" I said no, but I've been doing this for so many years, I've been an advocate, I've worked with NAMI and other families and I've gone into schools for IEP's. She says again, "do you have a degree in special education?" Of course I answered again. NO! I said I don't need one to know what is the law!

So we move forward again (and as you can tell, I was getting angrier and more frustrated with her). I told her how her resource room teacher at the second to last IEP conference (actually I think it was just a conference) has asked me if difficult child had schizophrenia or DID or had been checked for that because we had been discussing how she can be jekyll and hyde in moods. I waivered back and forth trying to recall which the teacher had actually said at the time because it was quite a while since that had been and as I said, a lot is going on and my head is jumbled on the spot (later in care I recalled it was mulitiple personalities of course!). At the moment I said that the doctor looked at me strangely, like I had too heads or something was wrong with me. I got the feeling like.....oh I don't know exactly like I said something wrong (not to mention she said "what is DID?"- ummm this is an accomplished doctor who doesn't know what DID is?). I felt like I was suddenly under a microscope! Then I just about lost it completely with her. I got totally frustated and with what ever she said next and I wasn't nice about it as I snapped at her. She said "I didn't mean to make you angry". I said to her "I don't like being made to feel like I'm losing my mind or don't know what I'm talking about."

Ok so I can tell you all the underlying thing on the losing the mind part. Exdh would always make me feel like I didn't hear what I actually hear or say things that I actually said, not to mention other family members. You may know the term "crazy makers?" Well that's what I have dealt with most of my life and 13 years of marriage so I do get triggered sometimes and due to what this doctor was doing it did just that. Also, because I felt like she was talking down to me as though I don't know anything about special education or anything much else. Many of you have dealt with this situation before. This relationship has become toxic and I have decided that I am leaving and moving forward. Even if we don't leave the area, I'm getting away from this place. After almost 3 years, honestly, I don't think we've made any headway with them and that's the saddest part because they are so well known and I gave them more then enough ample time. With this doctor it seems everything that was stated was going to happen, each visit it changed. Initially we started out going in one direction - we were going to start with genetic testing to start ruling certain things out like fragile x, etc.. and then it became more like the same of dealing with a psychiatrist. Not dealing with a specialist like she was suppose to be for middle difficult child and little dude basically has been left to just medication management and getting nowhere. Oldest difficult child left her therapist a while ago. Last thing her therpist said to her (at 16 no less) is that all she can do is get out of the house! WoW! Oldest asked at that time to go into foster care and almost did get HERSELF placed there thinking that was her only option. Yes, it's that bad with the little ones but that wasn't her only option but that is the way the therapist pushed her only I didn't learn that until this past week!


So tell me ladies please.......I can take it! Where did I go wrong, and I know it's only one side of the story, if I went wrong? Was I justified in being angry with her for no notes or treating me the way she did over the special education? I'm listening.......

 

[smallworld]

Is she a child psychiatrist or a developmental pediatrician? It makes a difference in terms of qualifications.

 

[tictoc]

Hi,
Just wanted to comment on getting your difficult child into social skills classes...I don't think it is correct that your child has to have an autism spectrum diagnosis to qualify for an IEP under the "autistic like behaviors catetory," nor should she have to be placed in that category to get social skills help at school. I know that a lot of school districts claim that this is so, but it really isn't. The child's needs, not the particular label, are supposed to drive the services. So, if she could benefit from social skills classes, then she should receive them, regardless of her diagnosis or lack of diagnosis.

My son, for example, has a formal diagnosis of Tourette Syndrome and ADHD. He qualifies for an IEP under the "other health impaired" category, but he receives social skills classes through his school's autism inclusion program. The school fought us on this, but we only had to push back a little before the school conceded that they had to offer difficult child autism services even without the autism diagnosis.


Good luck.

 

[Tiapet]

small, she isn't a psychiatrist. This is what I found on her " practices pediatric developmental behavioral health and pediatrics". Her office is in the behavioral health office and she doesn't practive medicine like a pediatrician at all. She does all the psychology stuff.

tictoc - that is exactly what the school told. She "had" to have that diagnosis or she couldn't have these services so "please let us know if she gets this diagnosis so we can offer her them". Thanks for the information on that. I guess I can go back to them and push back now! There is very little time left in school year now and I know they will do nothing because they are trying desperately to fit everyone's end of year IEP renewals in as it is. Since we are potential/probably moving, maybe it's a good idea to take it up with the new school and see how it goes?

 

[BusynMember]

I got as far as what she said about spectrum kids and then my sight went red. Whatever her title, she doesn't have a clue what she is talking about. It's true that classically low-functioning autistic kids probably can't really get along with people, although many do relate to their parents well. But your child obviously, if on the spectrum (and to be it seems she could be) is not low functioning and either has Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. Um, my son was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified and/or high functioning autism. He gets along with everyone and is very non-confrontational. He doesn't have good conversational skills and tends to either monologue at people or stay pretty quiet, but he has a group of school friends. His teachers love him and he likes to help other kids in Special Education classes where he used to be. Plain and simple, whoever this person is, he or she does not know anything about Autism Spectrum Disorders (ASD) and I would get another opinion. If she IS on the spectrum, she will need more than just social skills and she can really improve. And medications don't really do it for any sort of spectrum disorder. If the child rages it can take off the edge, but it won't stop the Autism Spectrum Disorders (ASD) symptoms as they are hardwired into the brain and the child needs to be taught how to learn social norms. This "Specialist" is not your friend...or anyone's friend. Find someone else.

Ok, now I'll go back and read the rest of your post Pardon me for cutting you short.

 

[Marguerite]

I only have literally two minutes to throw a reply together. You'll have to put up with my typo's.

First - you did fairly well considering what you were dealing with. Autism - social skills issues don't necessarily mean "withdrawn" or "aloof". It's a misconception. difficult child 3 is very gregarious, loves people. But he doesn't know hoe to interact appropriately. She was correctwhen she said that socially, Asperger's is the same as autism. But she has an old-fashioned concept of autism, very narrow compared to more modern understqanding.

Now - what oyu have to do form here - KEEP A DAILY DIARY. YOu write in it whatever happened tta day. Use it to commmunicate with the teachers. Get the teachers to also communicate back to yoyu. YOU collate it all. Take a copy to all appointments. USe the diary as a recordof her progress and problems - this can really help you pinpoint the exact problems you were describing.

about tat problem - we had it too. It's very much an attention issue (as in ADHD) and also, in my opinion, very much a facet of autism too. Not all Pervasive Developmental Disorder (PDD) kids have this, but mostly the ones who also have ADHD have some degree of difficulty with this. Also, learnnig where social issues are a peroblem - that is a stumblnig block. Also, word problems - I coach Maths andI've observed this very problem. Tere are other things you need to do - get her eyeschecked out by a developmentaloptometrist, if you can find one. You need the fine detail, she is having trouble finding the informarion andchoosing what she needs. She needs tyo be coached in how to identify what she needs. It'd adifferent mental approach.

Sorry, gotta run. UI won't be back for hours, uless I get a short grap in an hour or so. If husband isn't too busy (although I'm afraid he will be today) he might fill in some gaps for you.

I WILL be back to this topic.

sorry about the typos I haven't even r4eadf over this.

Marg

 

[BusynMember]

I'd like to add to what Marg said about the ADHD being a symptom of Autism Spectrum Disorders (ASD). IT IS! My son has a terrible time concentrating, however Autism Spectrum Disorders (ASD) kids are also often sensitive to medication and stimulants just made him mean and aggressive. But there is definitely a strong link between the two. Kids with Autism Spectrum Disorders (ASD) have much worse social skills. Some ADD kids have good social skills...my daughter has it and medications are really helping her concentration, but has amazing social skills for her age, really picks up social cues well, and has friends everywhere. My son is quite shy with anyone he doesn't know or in a group of new people.BUT some Autism Spectrum Disorders (ASD) kids are very friendly, although often inappropriate in the way they approach people. They need to be taught.

Okay, off my soap box

 

[JJJ]

Diagnosis does not drive IEP services, needs do. If the school says difficult child needs social skills class, she gets them even if her diagnosis is "purple cow".

 

[smallworld]

JJJ is right -- needs as written in the IEP dictate services, NOT diagnosis.

We didn't have very good luck with a developmental pediatrican here. He messed up our son J's medications, and then when J was manic from a bad medication reaction, the doctor told us to create a behavioral plan that in his emotional state there was no way J could follow. It was a complete fiasco, and we ended up leaving this doctor within 3 months start to finish.

If you are not certain whether your daughter has an Autism Spectrum Disorders (ASD) diagnosis, you could call your local Autism Society chapter and find out who is the best diagnostician in your area. You might get some better answers that way.

 

[DammitJanet]

Are you going to one of the Developmental Evaluation Centers here? I would think she would be getting a bit old for them.

Are we talking a light blue flag or a darker blue flag? That gives me a clearer picture of where you are dealing with...if at all. LOL. I think I may know the residential school they are talking about...is it in Raleigh? I thought that was a very good place to be honest but I dont think you would have but a couple more years for her to attend. Maybe 2. Why wont exh agree to it? I think it is publicly funded. He certainly wont like where she ends up if you cant control her. I know a few other EGBS schools around the area but if xh wont agree...tough. Oh...how old is she? There is a place down here for girls. I also know of a wilderness camp down here that takes girls. Something to think about.

 

[DaisyFace]

Tiapet--

I, too, have run into idjit docs/therapists who have, upon meeting my daughter, proclaimed "O she's not autistic--her eyes are fine!"



Don't blame yourself. My impression is that you are coming across as a little "too knowledgable" for this doctor's comfort. Her problem with you is not your fault--but it is probably leading her to feel as though you are "trying" to make-up a problem about your child based upon something you saw online or a movie-of-the-week. So she's out to prove you wrong....instead of really examing your child's issues.

I think the best solution is to find a new doctor. I know there are so few to choose from....but this one sounds as though she's going to cause you nothing but aggravation.

And chances are, you are not the only parent that has run into this with this doctor...

So don't beat yourself up!

 

[Marguerite]

I'm back now.

You are right to be concerned. Also right to be frustrated with this doctor who seems to want to play mind games with you, to cover up her own inadequacy and paranoia over you having more tan a faint clue about your own child.

If you can, get another opinion, preferably far away from this person. Find a neuropsychologist for an assessment. If you can, get a referral from your local autism association. The problem is, the understanding of autism has changed a lot in recent years, it has broadened (thankfully) which means some kids who previously would have been left without a diagnosis, now have a label that covers them and can be used to get support. And although it shouldn't work that way (get the label before help can be given) unfortunately, too many areas do work that way and the effort to fight them can be just too much, on top of what you're already trying to do with raising a very demanding child.

Another problem - girls tend to be atypical. A girl with Pervasive Developmental Disorder (PDD) in some form can sometimes seem more capable, especially in areas usually considered classic autism symptoms. Also, the smarter the child in general, the better they can mask the symptoms. They're not doing it to be deceptive, but because the one thing they want (like so many of us) is to fit in. Someone can be autistic, but still aware they are different and very much wanting to fit in.

Rules are important. While some rules are obvious and often written down, these kids observe those around them and in their own minds, analyse events in order to determine what the rules REALLY are. For example, at difficult child 3's school there was a school rule, "Do not hit other people. The punishment is detention." That was written down.
But difficult child 3 observed that it didn't always work that way. Kids would hit him at times and those kids would not get into trouble. But often when he hit these kids back, he would get into trouble. He couldn't work out that the other kids knew when the teachers weren't looking. For difficult child 3 with no theory of mind, he believed that what HE saw, so did everyone else including teachers. So if difficult child 3 saw a kid hit him, then he was convinced the teachers must know it too - every thought in his own head was surely there for everyone to see? So to difficult child 3's mind, the rule became, "Do not hit others or you will be put on detention. However, if you hit difficult child 3, that won't be punished."
Then difficult child 3 found that when he hit back, he would be put on detention. But other kids would hit and push each other, and not get into trouble. He saw it happen often. So the rule became in his mind, "It's wrong to hit other people, unless that person is difficult child 3. Then it's OK." Also came the rule, "difficult child 3 will be in trouble, no matter what he tries to do. It is because he is difficult child 3."

We had similar problems with difficult child 1 - he believed he was a bad person because he was made tat way. He was always getting into trouble for his inability to sit still, so he 'learned' that his fate in life was to be in trouble. It was to his mind because he simply was a bad person.

It takes a lot of effort and a lot of positive reinforcement, to undo such damage.

Keeping a diary, putting it all in writing, is a good way to keep your confidence in what you know about your child. It also helps reinforce it when what is written in the diary includes observations by others, including teachers.

Another thing that you probably need to do, to help you in this sort of situation - take along some notes, the questions you want answered and any points you want to make, put them in writing before your appointment. Also take your notebook and pen in with you and make notes. Any doctor or therapist who looks askance at this is someone who doesn't get it. I've only a couple of times had a doctor or similar, get annoyed with me for taking notes. And each time, they turned out to not be good doctors for me, for various reasons.

I also sometimes have found a doctor or similar react unfavourably to my technical or medical knowledge. Again, I feel, with hindsight, that they feel threatened by it because they need to feel superior. And frankly, I prefer to work with my doctors and therapists as team players, not as someone gazing adoringly at a specialist on a pedestal. I need to know, I need to be informed, and similarly if I have something to contribute then I will, and any doctor who doesn't like it just has to accept it or find me moving on to consult someone who is not so insecure.

I don't big-note myself for having the knowledge I do - if a doctor says to me, "You sound like you've read up on this. Are you a health professional?" I tell them the truth. Plain and simple - I've studied to a certain extent as part of my qualifications. I see no reason to hide my knowledge, or to apologise for it.

In the same way, when having to cope with a child like mine, I've learned a lot over the years. And living with it, I recognise autism in its various forms very readily. My kids reckon I see autism under every rock, but I don't believe it's because I'm obsessed with it or have a one-track mind; I think it's because I'm so familiar with it, that I know it so readily when I do encounter it. Of course I don't go up to total strangers and say to them, "I think your child has autism," because I don't know them or where they are on their journey. But if someone asks me, I will venture an opinion if I think it is appropriate to do so. I also emphasise, I am only a parent, I do not have qualifications to make a diagnosis.

I have found, in my case, that doctors etc who find my knowledge discomforting also tend to not be a good fit for me in other ways. Most recently, my rheumatologist has fallen into this category. My gastroenterologist also at first seemed discomforted by my knowledge, until he seemed to accept it when I said, "You are the doctor. I have some knowledge form my studies, but your qualifications are more detailed, of course, and also more recent. While it means you won't have to explain things in simple detail, I do want to be kept fully informed so I can understand."
The gastroenterologist seemed happy with this. The rheumatologist, however, keeps asking me, "Why do you seem to know so much?" as if he has forgotten (he probably has). Plus he doesn't like complex questions, he likes to give simple answers and when I don't find the answer sufficiently enlightening, he gets testy with me for asking more questions. Also I began to feel he was not telling me stuff I needed to know, and instead dishing out a formulaic approach to treatment which was not in my best interests, so I've asked my GP to find me someone else, especially since the rheumatologist said to me, "Since you don't want to take prednisone, I don't think there's any point you seeming me regularly. Only come back to see me if your symptoms return."
Well, the symptoms couldn't return, because they had never gone away! And I still want answers, I still want someone to REALLY keep tabs on my condition and help find out how to treat this - and this guy doesn't seem interested. I don't worship him enough, plus I refused the treatment he wanted (because all my other doctors were horrified at the damage prednisone was doing to their treatment of me).

What I'm saying - you need your health professionals to be team players. In the team are all the other health professionals as well as the patient, and the patient's family. While it is correct to listen to the doctor and take their professional advice, it is also important to inform yourself and use your knowledge to help. Clearly if your information is wrong and the doctor tells you, then you accept this and learn from it.

My mother in law used to be a nurse. She now has a lot of health problems (old age, too) and still hides her past experience because she says, "doctors don't like it if they find you know the terminology. They don't like it if you're too knowledgeable."
But the last few times she's been in hospital, we've deliberately blown her cover and told them - "she's an ex-nurse. Use that information, you might get better results from her. Don't treat her like an idiot, she resents it. But she won't let on she understands, so to a certain extent she deserves it."

It's an old attitude, one that these days is misplaced. Or should be.

Frankly, it's an attitude that only gets in the way.

Also, and tis is my own personal observation, the one branch of the health professions where I've seen the most paranoia and the most instability, is in psychology. Lately I've seen far less of it, most psychologists I've encountered in recent years have been balanced, stable, personally secure. But occasionally I come across one who still seems to have problems, and I find I just can't work with them.

I don't know why it's in psychology, mostly. husband said he noticed the same thing when he was studying psychology at uni - he said the lecturers were all nuts, and had a massive collective chip on their shoulders about being disregarded in the health professions.

So if this therapist is one such - walk away. Get a referral to someone else who won't waste your time trying to make you feel insecure and uncertain, in order to make the psychologist feel more in control. Because such a person would rather blame you or convince you there is not problem, than admit that this child is a handful who needs more careful professional assessment.

Marg

 

[susiestar]

I think this doctor you are seeing is just a therapist - psychologist or licensed social worker. NOT a medical doctor. She sounds like an ill-informed idjit and I would find someone else before I spent another penny on her. You need someone you can work with.

I took a lot of psychiatric classes in college. Only one had a prof that wasn't nuts. One psychiatric prof didn't recognize me when he came into a used bookstore I ran. He had all sorts of totally inappropriate questions and on one visit he FLASHED me! In those days I was studying photography and always had a camera at hand. I grabbed a photo and then told him to wait. I wrote my name, student ID and the time of the class I had him for. I told him he either gave me an A without me coming to class again or I would show the photo to the police and the president of the university (who was a neighbor). I was 16 at the time. Not the most honorable thing for me to do, but he was using the book I used in high school for psychology and mostly all he did was draw cartoons on the chalkboard. Ones that had NOTHING to do with anything. I would do it differently today, but I WAS 16 at the time.

Now psychology students are required to spend more time in therapy to get any degree past a bachelors. This is because everyone has baggage and it is hard to treat someone else's baggage until you have coped with your own.

Your "doctor" has too much of her own baggage. She is also an idiot. There are a lot of them out there.

We had the best luck of all docs with our dev pediatrician. He is the one that Shari's Weegfg is seeing and he is AWESOME. The only reason we changed was because our insurance changed.

Find someone who will work with you and not pretend to be the "boss" of you. This one is too insecure to be effective.

 

[Tiapet]

In general, after all these years doing this, I knew school had to provide the services if the child needed it, which is what I was pointing out to both the school and this doctor (who is a doctor -pediatric development and medicine specialist with degree). What I have been trying to do is "prove" she needs the service to the school via this doctor, as well as get this point across to the doctor that I need to prove this to the school. Not look for a particular label for her to access it but someway of proving it that I have apparently not been able to sufficiently to satisfy the schools criteria as of yet. Because I told her I have been doing this for so many years, advocating, working with others, etc.. all my knowledge is when she flat out asked if I had a degree in special education. No, of course not, most of us don't and we don't NEED one to do what we do! LOL

No Janet, not going to a developmental center. It's the dark blue flag up here but just learned that this particular place is actually an offshoot of the name sake they are using and not the actually Psychology department of it (go figure). That there is a whole department of people we should have been going to and not here. I'm beginning to wonder if all these people we have been using for all the difficult child's at this place aren't just rejects from the name sake! LOL Why else wouldn't they be working in the main facility and under the main name? The school you may be thinking of up here only takes the kids (boys and girls) until they are 12. She just aged out for it so can no longer attend and there was talk of it closing recently (in fact I'm not so sure they still aren't closing) and yes it is publicly funded. The light blue place, I've since learned is THE place I should have been going to as they are much more known for Pscyh stuff! I didn't know. I came here and was lost. Back in PA I knew as much as you know about NC. I have no contacts and know no one down here, even still. Since we're going to be moving (and at this moment don't even have a clue where the heck that's going to be) I can't even do anything. The one thing I have decided is that I am NOT going back to this place with any of the difficult child after looking back over the last 3 years of care. We've gotten no where with them at all. In the past, we've at least gotten tiny steps in other places. In fact, here's a good one....oldest difficult child at 16 went to her therapist very frustrated over sibling difficult children behaviors being off the wall and she couldn't tolerate it. The advice given to her? The best thing she could do was to get out of house! Ok, so then mx emo decided at that time she wanted to consider being placed in foster care!!! What therapist would advocate splitting up a family rather then trying to help difficult child work through it (as she basically had no coping skills to begin with due to her OWN issues)? The sibling difficult children weren't getting adequate treatment that was helping them (which I was complaining about repeatedly to the facility). I kept telling them the medications weren't working for them as well and the psychiatrist wasn't properly addressing it and he as well wasn't keeping notes either on what or why we did things with different medications and put them back on medications that didn't work the first time even though I told him this anyway!

Ms queen has stumped everyone as to what really is all going on with her. The only FIRM diagnosis we have at this time with her is ADHD inattentive (the wind can blow and she's distracted) and severe ODD. For 5 years we've questioned BiPolar (BP) but some have thrown that out as well. She has mood fluctuations on a dime. She can be crying hysterically one minute like someone died and instantly stop and then be laughing just as hysterically. She shows inappropriate emotions at times, other times it is appropriate ( or is is mimick/faked? - we don't know). She lies terribly, steals to the point of klepto almost (no reasoning on some of the things she takes), steals food (including breaking into locked things), manipulates everyone (especially those that don't know her), overlying charming and sweet to those that don't know her so she is well liked, extremely immature and can't get along with peers and will play with kids light years younger then her, prefers and clings to adults, will listen to adults even if she is rooms away or upstairs (like sitting in her room sitting listening to all downstairs going on and do nothing while sitting there listening- or sit outside her sisters bedroom door listening when she has company), does not understand (or care?) about stranger danger what so ever, seems to be overtly sexual and notices things of a sexual nature (ex; a feminine commercial product - lady spins around and her dress twirls but you can't see anything, she mentions how "high" up it is, she will notice females cleavage and stare), she wants to be sitting on peoples lap if she can at 13 or as close to them as she possibly can get, she is overly "huggy" with many people including teachers or those she might have just met but when it comes to me, she is stand offish (she was attached to my hip practically the first year or more of her life due to birth defects/medical needs process we had to go through so we were close and she got lots of attention from all sources), she demands to be first for everything (in school and at home), things "must" be her way and does try to control the house overall (these are some of the reasons why Autism Spectrum Disorders (ASD) doesn't quite fit as well). When we first moved here, she went around the neighborhood the day we moved in and knocked on everyone's door (literally) to see if they had kids she could play with. Something you just don' t do!

On the other hand, prior to 4/5 years old she was nothing like this! She was always a sweet, lovable, charming child. A social butterfly (which she is now still but inappropriately so). At that age is when things started to slowly change, or at least when we started noticing things changing. They wanted to keep her back in k and almost every year since then but for wrong reasons at the time. I did allow and ask for it in 5th because she wasn't socially ready for 6th grade at all and they were going to fight me until she didn't make the end of grade testing to pass through. So getting back to some changes, she began by stealing food and hiding it in her bed (at time she shared a bedroom- now she doesn't and hasn't for 3 1/2 years). She also began the tantrums and rages and screaming. These things have only increased as has the lying now. Once we moved and as she has aged and has had to be more accountable for academics and older child normal things all these other things have stood out more because she wasn't capable of doing them (like the math, telling time, money, caring properly for herself, etc...).

Any yes, I have dealt with many doctors both for myself and difficult children being challanged with my knowledge. I have learned it's not the right mix when we can't be a team. For myself I leave the docs and usually for the kids too but in this case I thought I was at the right place, one of the best places and of course I've now learned a little more. It just goes to show how we do the best we can with what we know at the time and do better when we know more. Problem is all the damage that happens in the mean time and I've had a lot of damage done by some people so far sadly.

As far as exdh and why he won't allow anything Janet, in his mind, he will take difficult child if she has to go anywhere! This coming from someone who refused to participate in all the docs and therapy sessions when we were together for oldest difficult child, denied she had anything wrong with her (even when she went inpatient), resented her for what she was doing to "mess up his life and how he couldn't have druggy firends over", and finally, after all the abuse we've been through from him and his drug use, I would not EVER send her to him....EVER! He hasn't the where with all to help her in the slightest and I don't believe he even would for a moment. So, that's what would happen if we went to court, he has rights to her and could end up getting her and the chance to have her. been there done that and already had to fight to keep them away and almost lost (believe it or not with everything I had documented and with testimony from therapist, etc..) courts sometimes are not fair and I'm not willing to risk this at all. It's her life that would be compromised if I lost the risk.

 

[DammitJanet]

Well wish you had a clue about the move. Light blue place has some good stuff. Cory went there for a neuropsychopharmocology exam when he was 10. It was interesting. If you move someplace in this state, let me know and I will try to help you.

 

[Marguerite]

The sexual curiosity stuff plus some of the other things you describe, sound way beyond anything that Pervasive Developmental Disorder (PDD) could describe. It is difficult sometimes, because a kid with Pervasive Developmental Disorder (PDD), especially if it's undiagnosed and untreated, will appear to have unexplained mood swings. The reason for this is, these kids do often feel very depressed at their inability to connect with the world and the way it all so often seems so unfair. But they can be so easily distracted out of their depression at least briefly, by the things they are obsessed with. However, that is all it is - a short-term distraction, the original mood will be back either with the next frustration, or when they are no longer distracted.

But the lying doesn't usually fit with Pervasive Developmental Disorder (PDD), especially if it's really credible and well thought out. A detailed, totally fictional and credible lie is generally not within the scope of someone with Pervasive Developmental Disorder (PDD).

A lot of the other things you describe, including the sexual curiosity - that still could fir with Pervasive Developmental Disorder (PDD), although the sexual side of things also can be BiPolar (BP). But I think you know all this. If someone with Asperger's just happens to be focussed on sex and sexuality (and who knows why they become interested in this or that?) then it could also like like a BiPolar (BP) precocity.

Perhaps because I live in a household of Aspies etc, that my response to inappropriateness is pragmatic - I bring it back to practicality i some way. For example, the ad for feminine hygiene with a woman twirling - my response to difficult child's extreme interest would be, "What do you think is the purpose of that ad? Is it a successful ad, do you think? It has made you pay attention, which gives them a better chance of you perhaps choosing their product, or maybe even talking about the ad so other people will remember the product. So by actively choosing to have that lady's skirt blow up just so far and no higher - they made that ad more successful. Good for you to have noticed. But always be aware of how much advertising is designed to manipulate your thinking."

Sex sells. Our kids are exposed to this and so it's n wonder that someone vulnerable will fixate on sexual matters younger than they should. OK, you feel her interest is way over the top - perhaps by being matter-of-fact about her responses and showing her how they have actually been solicited by the advertising (or her developing hormones) then you can be helping her back to a more realistic position.

As with stims, if you try to block it or subvert it, you can drive the problem underground and make it ten times bigger (like fungus). Whereas if you dig it all over, turn over the soil and spread it out to dry in the full light of day, you can kill off the fungal spores (metaphor here) and she may transfer her intense need for something to be interested in, to something more appropriate.

Information and knowledge can also help. For example, if your child is sexually precocious and determined to have sex at the first possible opportunity, be aware that you will not be able to legally prevent it. A chastity belt might prevent, but that is not legal. No, the best protection is a combination of information and access to resources. Use the obsession to ensure the child is as informed as possible about the consequences of unprotected sex, and also provide protection to the child so that unprotected sex is less likely to happen; or if it does, then the consequences can be reduced as far as possible.

When I was a kid, our railway stations had huge posters about VD. As an avid reader, I had the darn things memorised. No way was I ever going to have unprotected sex outside of marriage. Times have changed.

When it became clear that at least some of my kids were likely to have unprotected sex, I took them condom shopping. Here, we can buy them in the supermarket. I asked the kids whether they wanted ribbed or not ribbed. I told them that frankly, despite what the advertising says, it makes very little difference since the nerve endings in the vagina are simply not sensitive enough to feel the difference. I told them which brands to avoid (too thick, therefore no fun for the boys) and when I found the flavoured condoms, I made a loud fuss and asked the kids which flavours they wanted to try. I warned them off banana though. When we got home I showed them where the condoms were kept and told them to help themselves if they needed any. I said I'd keep track and re-stock when the supplies ran down, or they could put them on the shopping list.

I think the whole experience of shopping with mama bought us at least another couple of years, before any of the kids dared have sex.

Marg

 

[Tiapet]

Marg - I'm actively working with her on the whole sexuality now as I see it I'm not going to be able to stop her what so ever and I'm able to be extremely open with my oldest and it works/worked well (however she is not preoccupied in anyway like this one either). I want to be sure this difficult child won't be pregnant at a young age or getting an STD because she is toooooo interested in sexual things and boys in general. She has been since she was a little girl as a matter of fact. Like I said, all things sexual. I've not ruled out the BiPolar (BP) because there is such a strong family history of it that it just can't be ruled out but there is all this other stuff going on that also comes into play so I know there can be multiple things here. Problem is, she shuts down/off and refuses to listen to anything and just doesn't get anything at all (or so it appears) in general towards all things, like the stranger danger and being so forward, learning things she needs to, etc. In her mind, the way it works, I can do what I want. Period. Female hygenien?ugh! She will not properly dispose of things, we find papers all over the place nor items that should be wrapped up - openly just splayed about. It's just gross! The things she is focused on, shaving her legs like crazy. It's funny. She will steal her sisters razor and shaving cream to do so even. She has bad acne. We have bought her all the products to help with it and taught her how she must properly care for her face, she refuses to do so. She will do it when she feels like it. Showers, she'll take them when she feels like it otherwise it's a fight. She wants to dress revealing so I make sure to buy clothes that aren't. Even then, she will end up wearing maybe 2-3 outfits out of all her clothes over and over again rather then all the clothes she has going to waste and it's not a sensory thing. She just says "I don't like them" when she liked them when they were bought.

I don't know about depression. I mean she never "seems" depressed in general but I suppose she could be. She doesn't display anything like it other then anger if she is and anger is often triggered effect if so. She is laughing most often (inapparopriately) and giggly and smiling. It's eery. She does seem to live in a fantasy/unrealistic world too. We've said this for years now about her. The way she thinks is just not normal for the most part as if she is in charge and can control everything, literally. That if we all weren't here everything would be fine (her words). Ooookay? And how would you support yourself?? No answer, she just thinks she'd be able to live magically.

I wouldn't say her lies are always well thought out. I guess sometimes they are? I'm not sure. Mostly they aren't she just sticks to it very strongly even once she is caught dead to rights that she is lied and can be proven she has lied (shown the proof). For example, an item is found in her room that she has stolen, she will say she didn't steal it her brother did and he put it there. We known fact he didn't do it (due to timing and him not even being around at time). She will swear he did, carry on, throw a tantrum, scream bloody murder (literally like someone is killing her) why won't we believe her, we never believe her, etc..

The screaming (as described above) is something she does often. Sometimes if she is frustrated or angry in general at something she will stand there and just scream like that at the top of her lungs period! She has a hard time using her words when frustrated it appears to us. Also, when she wants something, often she won't tell us, she has to "show us". I don't know why, she just does. She gets really angry with us over that. We say just tell us what you want. She will say I can't. And wants us to come with us so she can show us what ever it is in the closet or refrigerator or whatever. This issue often comes up over food. The other thing with food, ever single day is that she never knows what she wants if we don't say we are having such and such (which she always balks at if we do say). So she must have the closet opened to "see" what is in there. She knows what is in that closet through and through yet she must "see" it every single time. She says she forgets but if we don't know where something is sometime, she sure as heck knows exactly where it is and will point it out. It's really really strange!

I figure if I keep posting here with how she is, all the collective heads here will help with their insights and maybe it will help me help her towards what might be going on and when I do move forward towards another doctor/location I will be on better footing this time to act. This has been my giant puzzle that I have not been able to solve or make headway on now for over 3 years. I figured out how to help older and younger difficult child, I can't seem to help her much and it bugs me.

 

[confuzzled]

i am no a doctor, nor do i play on one tv, but honestly? and i do NOT mean to sound presumptious....i'm assuming some of this stuff has been done, but i'm saying it on the off chance it hasnt.

i'd find it hard to believe your difficult child has (or only has) adhd-in and ODD. not just hard, impossible. i think life works in mysterious ways, and i'm actually glad you told off the current doctors and hope you find a new one asap. i think its aggregious that a professional could chalk any of this up to adhd/odd.

i'd personally take a very hard look at whatever medications yours is on....i'd be very concerned if there is any stimulant (ESPECIALLY alone!).

comorbidity? maybe. but from what you say, i personally wouldnt be leaning to spectrum diagnosis's. i'm not even so sure i'd buy the adhd-in diagnosis right now. if you havent already, i think i'd be starting down the road to have all things medical ruled out (neurology, audiology, endocrinology, and so on) and then either deal with a medical issue or know its time to really just focus on the psychiatric side. which may mean a reasonable time impatient stay for the professionals you choose to REALLY evaluate the situation and REALLY be agressive with medications.

i also think all of this is way beyond the scope of any therapist or sw or case manager or other layperson with a few letters after their name. i really think the situation requires a very hands on psychiatrist, as in psychiatrist, not psychologist, who will see her regularly...not once a month for 10 min. i know its easier said than done, but it sounds like even right here you have great local support with someone who has been there done that....at least the two of you can put your heads together to rule dr's OUT if nothing else.

i dont know what you are looking at, but i hope you are finally on the road to finding the sorely needed help your difficult child needs.

my heart goes out to both you and your difficult child.

 

[Marguerite]

Confuzzled, I still see Pervasive Developmental Disorder (PDD) issues but I agree, there sounds to be more here. And the ADHD label could be getting in the way. As for the ODD - forget it. It's a description, nothing more. It also is getting in the way of a real diagnosis. Because ODD is a result, not a cause.

I think you need a multidisciplinary approach, with various specialisations talking to one another and if possible getting their heads together.

She does sound like she has significant language issues - expressive. Especially when agitated.

The lying - it's not too complex for Pervasive Developmental Disorder (PDD). Especially the insistence that she is right and nobody is believing her. However, the ongoing insistence in the face of alternative evidence - either she is not able to understand (especially when agitated) the evidence against her lie, or she now believes it herself. Which tells me she probably IS, at least at times, out of touch with reality.

As for her needing to show you things, needing to see things - I believe you need to give way on this, complete,y for a while. Just see what happens if you do. Because I don't think she is doing this to be annoying, I think she really needs to do this. I don't know why, but it seems to be part of the puzzle. You say she knows what is in the fridge already before she looks, but has to look anyway - how do you know she knows already? Or do you assume that she SHOULD know, because she only looked five minutes earlier? Her inability to know and need to look, could be connected to the apparent ADHD, the information not being laid down in memory due to inattention (at the brain level). ADHD is a great deal more than a kid simply being distracted. At the level of the brain, it can be quite nasty, in what the child has to deal with.

Stimulant medications, if not really right for her, could be a big part of the problem. But if they happen to be right for her, they won't be making her worse. Stimulant medications when given appropriately for ADHD have a paradoxic, calming effect. They are actually stimulating an otherwise faulty switch in the brain that now is switching off the impulsivity (allegedly).

Frankly, the ADHD in this sounds to me like at some stage a doctor was clutching at straws or perhaps taking a revolving door approach to this kid, shoving the medications at her because she seemed to be similar to the last ten kids who walked through his door.

But girls are different in how they express ADHD and Pervasive Developmental Disorder (PDD). Plus you can have co-morbidity in a number of conditions.

I agree with confuzzled - you need someone good, someone who doesn't always diagnose the same thing in every patient. So avoid, if you can, the specialist who seems to specialise in Pervasive Developmental Disorder (PDD), or in ADHD. Or even BiPolar (BP). If you can, find a clinic that has a range of disciplines in it. She needs a Speech Pathologist, she needs a neuropsychologist assessment and she needs a pediatric psychiatrist or similar. Probably more.

If you feel it's just too much to try and find such a place, or they're too far away - then think about how your life will be if you DON'T find such a place to help you with answers. The effort involved is an investment in your child. I'm probably preaching to the choir with this one.

Marg

 

[TerryJ2]

Sigh.
Maybe your doctor went to school with-Daisyface's dr?

Sounds like a combo Pervasive Developmental Disorder (PDD) and Borderline (BPD) to me, but with-the medications, it's hard to tell.

I agree with-Confuzzled, that you need a good psychiatrist and other referrals to rule out medical issues.
We're still doing that after all these yrs, but you never know. Sigh.
(We just ruled out high testosterone, for example, in regard to aggression and early puberty, a day late and dollar short.)

This is so frustrating.