ridiculously long intro--new

Discussion in 'General Parenting' started by confuzzled, Jan 20, 2010.

  1. confuzzled

    confuzzled Member

    nice to meet you all, sorry to do so under our circumstances.
    i'm here trying to figure out what is up with my daughter. the story
    is long, and complex, so feel free to ask if you need more info.


    there has always been something.

    walked at 8 mo, bit of a late talker but nothing extreme-answer
    was she was so focused on motor skills, potty training was tough, maybe late 3?

    we've had different diagnosis's suggested throughout the years, but no one ever seems to agree, and no one ever has a plan. *I* put the plans in place for school.

    she's probably extremely hf Autism Spectrum Disorders (ASD). also has adhd like issues. definitely
    now has self esteem problems/depression/anxiety. impulsivity is an issue.
    she's hyperlexic (hence early rule in/out of Autism Spectrum Disorders (ASD)'s), social skills stink, but
    until this year there has always been THE bff. shes had some communication issues with pragmatics and not always the best at it, but much improved. comprehends everything she reads. can often repeat what she's read verbatim. sometimes incorporates things she's read into conversation.
    she also is very bright-
    (old fsiq:118, and she's a poor tester--noted as acadamic skills are very advanced).

    she's had an iep since 4 under comm. impaired, full array of services, and a para since k. most recent one is with her for the last two years,
    i'm not overly impressed but the good one got literally
    requested out from under us. iep is weak, and i havent insisted on compliance or real, appropriate goals--i cared more about insuring services. my bad--wont happen again.

    classification was changed around 8 to OHI at schools insistance, since comm issues were resolving, to retain services. placement has always been mainstream with the exception of spEd for reading/spelling/etc since she was on a much higher level academically and she needed small group/challenging work. just now moved her to spEd math. i couldnt, and still cant, even fathom her in a self contained class for the autistic or ed or anything less than typical.

    she also doesnt present with enough issues to label one way or the other. with the overlaps in symptoms she's not so clear cut. i've heard a lot of autistic flavor, possibly gifted, probably bored, hyperactive, etc over the years. once in a while defiant gets thrown in there...more by those who dont know her, or the whole picture--never by those who do.

    the last formal diagnosis was adhd, by a neurologist, who started
    her on focalin 5mg at oh, say, 80lbs or so....so umm, no, we saw no difference and Difficult Child'd it. he saw no need to try an appropriate dose and only wanted to take the edge off. (and as a huge aside, i know him, he knew what i needed for this school classification issue, and i've always assumed we were both not totally convinced of adhd...i had no idea it could present so differently in girls) so i can't conclusively say if it worked or not.

    that was 2 years ago. and now she's entering puberty.


    impulsivity kicked into high gear at the start of this school year. hates school, difficulty focusing, poorer judgement than usual. huge frustration issues with school (quite frankly, very justified! two words: spiral curriculum). something was up, but we chalked it up to puberty, more rigorous, lecture heavy school, etc.

    no doctors were involved on any level--she does see the school psychiatric and has for three years.

    late nov, she started slamming her head on her desk and then was talking out loud to an "imaginary friend". she starts insisting this character is real (its a take on a real character in a game).

    first it was thought to be frustration and the imaginary friend was a coping mechanism.

    then the psychiatric thought she had a break with reality.

    i had no real reason to doubt her opinion, she's seen daughter for 3 years. she put me on high alert. i was desperately working on finding a kid psychiatrist and couldnt get an appointment to save my life. i saw a single instance of the
    talking to imaginary friend and it was pretty terrifying, at least after it having been suggested that she had a break with reality (otherwise, seriously, i might have told her to stop fooling around!).

    we were walking on eggshells with her.

    early dec, she slams head on desk and in the process somehow stabs her hand with a pencil. (she maintains to this day she meant to slam her head and the hand was an accident).

    it was suggested (actually, impressed on me--self injurious behavior) that she needed a psychiatric hospital immediately and ultimately was admitted
    to the psychiatric hospital that night. she stayed for 5 days, the first in which she slept til 11am (not admitted until 2am)--and by the time i came in a 1pm she had already seen psychiatrist and was diagnosis'd with Pervasive Developmental Disorder (PDD)-not otherwise specified rule out aspergers,
    depression and anxiety and was to be started on zoloft. he did NOT think she was hallucinating and felt it was part of Autism Spectrum Disorders (ASD). she was kept for medication monitoring (for zoloft??) which they forgot to write for so it was NOT started the next day, with no one realizing their error until daughter asks me if she's supposed to get a pill.

    she had a few "groups" but never saw psychiatrist again--after the
    inital hysteria at being there, she was compliant, well behaved and motivated to follow the rules to come home. model patient. (she's NOT a manipulator at all) couldnt say enough nice about her. psychiatric hospital sent us home with appts for second psychiatrist, therapist for intake which included third psychiatrist and a one month rx for zoloft.


    she's seen a second psychiatrist who went down the conduct disorder road--Obsessive Compulsive Disorder (OCD), odd, adhd, anxiety, impulsivity disorder, and watch for signs of kleptomania?? after less then an hour appointment. also kept saying "its allll about her", wth that meant, i'll never really know. i ditched her, and pray i dont live to regret it.

    now with a third psychiatrist who confirmed aspergers and impulsivity control issues. also seeing a neuropsychologist. he too agreed with above. he suggested trying stimulant therapy for the adhd like stuff. (treat the symptoms regardless of labels idea) we agreed that would give us a lot of info very quickly, sent me to regular pediatrician for rx, got one for concerta, and promised i'd check with psychiatrist before starting it. neuropsychologist was trying to discourage formal testing to save me money???? even though i assured him i didnt care and was insisting we need it to figure out whats going on.
    i seem to be the only one who thinks it will be useful to help her, even if
    its in life skills, or edu, or whatever, since there is NO conclusive test for ANY of these suggested labels. maybe i'm wrong, who knows, but its my kid, my $$, and what possible motivation can he have to NOT want to test this kid, especially with a cash in hand paying parent whos insisting on it???

    i have to follow up with him so she can draw for him, and then
    he's implied we can decide on which testing to do (i've already got test slot scheduled for early feb) mentioned the nepsy.

    school is on board to do the edu testing, because, quite frankly, i cant really cant afford all of this. no one really expects edu testing to show much of anything by that shes bright.

    she did great on 50 mg. zoloft. or so i thought. amazing holidays with her--happy, social, good mood, etc. we thought it was a wonder pill.

    i get tag teamed by school when i go in last week to plan the triennal and told she is manic-y and symptoms are ramping up again (their words, not mine) after a fabulous 2 week honeymoon. did not specifically say she was talking to imag. friend, but talked about making her hands
    into puppets (two hands talking back and forth kind of thing) and i really didnt think to clarify any further, mainly because it sounded like she was bored and entertaining herself rather than hallucinating, and i took it as she did it once, not constantly . but the manic word along with ramping up scares the daylights out of me.

    according to them this was happening for the last week. WHY they didnt feel the need to call me immediately i'll never know. it was a huge problem--i still had the carpy psychiatrist appointment and had cancelled it the day before--i'd have kept it had i known this information.

    i saw nothing unusual at home.

    called psychiatrist in a panic who is confused over why i'm calling and drops zoloft to 25mg. just in case.

    go to psychiatrist today for an emergency appointment where she proceeds to rip me a new one...as i sit there dumbfounded. she rants there are two many doctors involved (i dont disagree but i believe we need her AND a neuropsychologist right now), she doesnt seem interested in getting
    to the bottom of if there is a mental illness here, a dev. delay, or comorbidity of multiple issues. she seems to be missing my point that *I* am doing what everyone is telling me to do, and that *I* have to rely on the school psychiatric to some degree, and that *I* am not an expert,
    and that if *I* knew what was really going on with daughter i've have told her, and that *I* am terrified FOR daughter. also not getting my panic that if there IS an underlying mental illness and we are missing it, with the Autism Spectrum Disorders (ASD) label, she is excluded automatically from psychiatric hospital. she also said neuropsychologist testing wasnt useful in guiding her diagnosis, implying shes not thrilled about him being involved. (i understand its NOT the dsm-iv, but ftlog!)

    she then decides we SHOULD start the concerta and Difficult Child's the zoloft entirely?? she tells me not to be concerned since concerta is metabolized fast. she also says if, when we see her at the end of march, we need to we will consider abilify. (again, *i* thought that mood stabilizers
    come first, then symptom medications, which is really the reason i felt the need to check on the concerta to begin with).

    i have no idea how exactly abilify made it into the conversation
    when she is pretty insistent that Autism Spectrum Disorders (ASD) explains it all.

    and THIS is the one i thought was good.

    i'm ready to slam *MY* head on a desk.

    if you read this far, thanks. any words of wisdom or even random thoughts are welcome :)

    i'm overwhelmed, i'm ready for my own axis diagnosis, and this is exhausting me. i literally cant do this. i dont know who to believe, what to do, where to turn. i do.not.care what the label is for label purposes, call her whatever you want. but the treatment for these things is very different. i just want to help my kid. properly.
  2. Marguerite

    Marguerite Active Member

    Welcome. Sorry you need us. Can see tat you definitely do!

    I agree with the Asperger's, it makes sense to me.

    It does sound to me like a lot of what is going on has been misinterpreted. Possible break with reality? I'm sceptical. But yes, keep an open mind. Girls with Asperger's do present a little differently sometimes, it can be confusing.

    At 10 years old, you're heading for fun and games when hormones kick in.

    The psychiatrist - can't understand that reaction. I understand the position you're in, with so many experts involved. It can get very confusing and that could have been what psychiatrist meant. But hey, this sort of thing evolves. Besides, if you want you can have an army looking out for her, it's not psychiatrist's problem. I would advise you cut it to the minimum, in terms of who has responsibility. You can have more strings to the bow but keep prescribing rights to one doctor only. The others can observe and suggest, can all know about one another, but you should only have one spider at the centre of the web.

    It does take a team to support a child like this. There is no room for prima donnas or drama queens on the team. All medicos must be team players.

    Others will be along soon to help.

  3. susiestar

    susiestar Roll With It

    Welcome! I am pleased to meet you and sorry for the circumstances.

    Sure seems like the docs/adults are as much trouble as your difficult child, if not more! (difficult child is gift from God, the child that brought you here).

    It very much sounds as if you have an Aspie or high functioning Autism Spectrum Disorders (ASD) of some kind. My not a mental health practitioner opinion. Not worth the paper it is not printed on, LOL.

    Let various docs be upset, as long as they help you.

    in my opinion you NEED the neuropsychologist. Get school to do as many tests as they will. Also have them do an Occupational Therapist (OT) evaluation and TRY to get them to do a complete evaluation including for sensory integration disorder (Sensory Integration Disorder (SID)). Treatment for Sensory Integration Disorder (SID) can be very helpful and most kids with Autism Spectrum Disorders (ASD) have some level of it. Sensitivity to stimuli or seeking an unusual level of stimuli.

    Many parents here feel neuropsychs do the best testing and are very thorough. I haven't had that experience, but I AM in Oklahoma and the best in many professions are not here. We also only found one linked to a psychiatric hospital and they don't pay well, Know what I mean??

    Ask the other parents what tests to ask for. They will problem know some specific names of tests.

    SSRI medications like zoloft are tricky. they can seem great and then BAM! they are a big problem. My son did very well on them. For a few months. Then he became physically aggressive and more depressed. Males seem to have this reaction, females not as much. Your daughter reacted almost the way my daughter did. She was trialed on both prozac and then zoloft as an attempt to help her deal with abuse my difficult child did to her. With each of them she was almost high. My happy to please you daughter led her 3rd grade class in a song and then in dancing around the room in a sort of conga line while the teacher tried to get them all to sit down. She was so happy the teacher would have thought she was high on some illegal drug if she hadn't known we were trying some medications to help her with a very serious situation.

    We had NO idea this could happen, but in children it is a normal response to many SSRI medications. As they get older their bodies seem to handle the medications differently, or so it seems to me. I think that tapering off the zoloft is an excellent idea. After even 2 weeks it should be tapered off. Did the doctor give you directions to taper the medication, or just tell you to stop it? Most docs I know do not believe that stopping an SSRI can have withdrawal symptoms. They can. I have 1st hand experience. If you wonder, google "zoloft withdrawal". You will be amazed. It probably will not be as bad as many make it sound online, simply because she has not been on it long.

    Concerta is a different beast. It is a stimulant. It is time released so it stays in the body for about 8-12 hours if my memory is correct. If it does not help then it will be out of her body quickly. Stimulants are fast in, fast out. My son did well on this medication for years. It was very effective for the ADHD part of his Aspergers. But not everyone is helped by it.

    I do think the time she slammed her head on the desk and stabbed herself in the hand was serious. It is a big deal, in my opinion. Clearly the hospital thought so, though why a 5 day stay I do not know. Probably it was all the insurance would pay for. Sadly that is often the case. More often though, they send us home with kids that need help, so I am very glad they kept her. I would ask for a copy of her records to verify the number of times the psychiatrist saw her. I would file a complaint over them not medicating her for over a day after medications were ordered. It is a sign that the psychiatric hospital is not very good, in my opinion. Of course they could have had a number of very violent patients and just been swamped, but medications are a serious deal and just forgetting them is NOT supposed to happen. So a complaint to the hospital could be very important in alerting someone that there is something really wrong up there.

    Other parents will have other ideas, questions, and suggestions for you. If possible could you click the User CP button and follow the directions to make a signature like the one at the bottom of my post? It will help us keep your situation clear in our minds.

    I also recommend that you write a Parent Report. You can find it in the FAQ section of the board, along with a list of common abbreviations. The Parent Report may be in a thread titled Parent Input/MDE (multidisciplinary evaluation). It contains the outline that many of us have found invaluable. It is a way to organize all the info that you have and will get about your difficult child. It can be invaluable when seeing a new doctor, among other things. (Oh, age 3 is not really late for potty training. Many sources say that potty training much before age 3 is often parent training, a parent learning the behavioral signs that a child is ready to use the potty rather than the child actually mastering the feat. this is just fyi and it may be that for her, 3 was late. Girls do tend to potty train earlier than boys.)

    Welcome to our group, again!

    Many hugs,

  4. confuzzled

    confuzzled Member

    thank you both for the replies--you were both VERY helpful ;-)

    i've been keeping a journal for the last few weeks to try to get this all sorted out--of course, you can see from my post that there is a LOT of info (of course, theres plenty more, i tried to hit the highlights!) and none of these professionals are really getting the full picture in one visit.

    and its not helping that the school tells me bits and pieces well after the fact, if at all. i'm not too sure they would have bothered to tell me much of anything if i wasnt in front of them. unfortunately for me, a good majority of the issues are happening AT school. its tough too because her
    academics arent really an issue---for 4 years of this math nonsense they insisted she was at the top of her class and not having a problem...apparently only i could see how she was struggling. shes on the honor roll.

    i know it cant be sorted out quickly. i actually think i'm the only one that DOES think that. nor do i think she will be "fixed" with a pill....she's always going to be rather interesting. she'll also probably cure cancer, change the way we use the internet or create some new dimension of animation.

    did i mention she is teaching herself japanese? and corrected the psychiatrist when they were talking about it? and was right?

    and yes, the zoloft was tapered from 50mg down to 25 mg. (LOVED the conga line story!!)

    concerta starts tomorrow. while i'm not a fan of medications, i *AM* sick of talking about this over 10 years and doing much of nothing medically....and i do think i need to trial it to see.

    this neuropsychologist testing literally cant come fast enough for me....

    OH, and my sig is showing for me--if its not i'll re-do it!!!
  5. confuzzled

    confuzzled Member

    OH---and for the record.....;)

    if my sig is now showing, you'll see i'm not new to the party--only to this specific branch.

    and one thing i know for a fact...while no one but a doctor IS a doctor....the best, and most useful sources of info for both diagnostics and services IS other parents or directly involved people.

    every.single.one of her docs reccommended a social skills group. not ONE could tell me where to find one.

    went to a support group for the first time in my life last night, not so much for support but for info....two other parents showed up. by the time i left i had phone #'s, contact people in hand, for a good amount of specific rec opportunities (no formal social skills group, but close enough, not a service either had even known about), a complete working knowledge of who's worth seeing and who's not for Autism Spectrum Disorders (ASD) stuff, and much more.

    and it only took two hours out of my life.

    based on what i've read here, i already trust that you all are VERY knowledgeable, will be VERY helpful.......

    of course, i always do my own homework
  6. DaisyFace

    DaisyFace Love me...Love me not

    Hello and Welcome!

    I can relate to so much of what you have written (including, by the way, the doctor upset that too many docs were involved...I've had the same conversation.)

    Sadly, mental illness is an in-exact science...

    Hopefully, you get some real answers soon!

  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there :) I understand why you are confuzzled ;) First off, never count on anyone at school to give you good answers. Sadly, they do not hire and brightest and best and almost never get a diagnosis right.

    I have a son with high functioning Autism Spectrum Disorders (ASD). There is really no sort of extemely high functioning almost-not-there Autism Spectrum Disorders (ASD) that brings people to this board. She doesn't sound "barely" Autism Spectrum Disorders (ASD). She sounds VERY Autism Spectrum Disorders (ASD). She is so much like my son, except for him not having behavioral issues, that they could be boy/girl twins. I really doubt your child has CD. I think she has untreated Aspergers which can cause too many mental health issues to name. A psychiatrist is not the person to go to for Aspergers either. She would need interventions specific to the disorder.

    I want to ask about speech. Sure, she probably speaks well and even probably sounds very verbal, like a little professor. However, can she hold a give and take age-appropriate conversation? Or does she dominate the conversation with HER specific obsessive interests while answering only "yes" or "no" when talking about other things. My son can break into a ten minute monologue when asked about his few interests. Other than that, he basically answers "yes" "no" "I don't know" "I can't explain" etc. For my son speech included answering people's questions approrpiately, not monologuing and a certain degree of social skills. by the way, we got his social skills help in school. We demanded it, fought for it, got it. We did hire a free parent advocate. You often have to fight very hard.

    The reason my son has no behavioral issues now is that he has had Autism Spectrum Disorders (ASD) treatment since infancy, even before he had the diagnose, which didn't come until he was 11. We told the school what he needed. They really thought everything was peachy.

    My son is now sixteen. I am not trying to brag. I am trying to tell you how good it can get if the Autism Spectrum Disorders (ASD) is addressed. He is mainstreamed almost 100% and has a 3.45 grade point average with 99% of his work done on his own. He can ask for help if he needs it, but he doesn't need it much anymore. He has a small group of friends...mostly the "geeks" and is probably the sweetest, kindest teen on the face of the earth. Yes, he used to rage, tear out his hair, scratch his face, bite me, etc. He was frustrated at being misunderstood. He "gets it" more now and understands his own disability. It is NOT easy to have Autism Spectrum Disorders (ASD) and it looks like a mental health issue when it is really neurological.

    I recommend she see somebody (a therapist) who specializes in autistic children. These therapists know how to handle them and to get the most out of them and to bring them out of their hell that they have to figure out called "the world."

    These kids have phenomenal rote memories. I smiled at your daughter teaching herself Japanese. That is very typical. My son is doing great in German class too. He is like an elephant, he never forgets a detail. Yet he has trouble explaining abstract thoughts such as "Why did I enjoy my vacation and how did it make me feel?" Autism Spectrum Disorders (ASD) kids have trouble with what, why, how, who questions.

    I hope you explore Autism Spectrum Disorders (ASD) further. in my opinion your professionals are not focusing on the right things and that in my opinion is why she keeps getting worse. Here is a good link about it:

  8. mstang67chic

    mstang67chic Going Green

    Welcome! As we say around here, we're sorry you had to find us but glad you did. You've gotten some wonderful advice so far and I can't really add to it as my son doesn't really have the same issues as your daughter.

    But...I will say that this board, this marvelous, incredible board, is a sanity saver, a floatation device, a refuge, a virtual encyclopedia of information, a support system, a comedy lounge and a family. And the best part? As it's located in your computer, it can go with you ANYWHERE!!!

    The people here GET IT. We may not all have some of the same experiences but they are similar enough that we understand. I said that my son has different issues from your daughter and while that affects my ability to give you advice or opinions on what I think you should do, it does not affect my ability to understand. I understand the frustration and difficulties of raising a difficult child, of dealing with clueless/well meaning family and friends, of idjit doctors and so called professionals, of wanting to run screaming into the night. I understand.

    We come from all over. Coast to coast here in the US, Canada, Australia, England, Jerusalem....all over the globe. We come from different economic groups, religions, cultures and politics but we are united in our children and our support of each other. Oh...and our humor. Sometimes I think that is the only thing that has kept me above water sometimes. We have our own individual sense of humor, the somewhat twisted ones we've developed as parents of difficult child's and our communal one that has evolved over the years. We have inside jokes that have come and gone, ones that have stuck and I'm sure you'll hear about and we are always coming up with new ones. There have been times (and I'm sure I'm not alone on this) that I had absolutely nothing to contribute. I couldn't comment coherently on other's posts and couldn't even muster up the energy to send someone a hug. But I still came here to read because I KNEW that somewhere I would find SOMETHING to laugh at and I NEEDED that.

    Come here long enough and you'll find yourself hooked. A couple of days go by without checking the board and you'll get twitchy. One of our ladies recently had a new grandbaby born. She went to her son and daughter in law's house WITH her laptop but had no internet. So she started calling each of us that she had numbers for so she could get her board fix! LOL ('Cause you know.....we're just that fabulous! :cutie_pie: )

    So anyhoo....look around if you haven't already, feel free to ask questions either on a post or privately through a PM. Find a comfy spot, kick your shoes off, take a deep breath and settle in. You've found a good place here.
  9. confuzzled

    confuzzled Member

    thanks for the reply and the link--i'm familiar with oasis.

    the "flavor" comment in my sig was kind of sarcastic....thats a favorite
    of most professionals who know her. we all know its like being a little bit pregnant....you either are, or you arent.

    i have no problem with her being on the spectrum if she truly is, we will deal with it accordingly. what that will look like, I don't know--we are in a part of the state that is truly lacking in services, but i'll figure it out.

    the issue is that all these symptoms are NEW. she wasnt a headbanger all her life. she didnt talk to imaginary friends with a change in affect all her life. she was no where near as impulsive as she is now. and she had never had self esteem issues before either. (granted, that one can be easily explained and could be plain old depression).

    THATS where the concern came in.

    i normally would NOT put a lot of stock in a school (whomever). i still dont know if the school psychiatric is right or wrong. i *DO* know she believed she had my daughter's best interest at heart, if that makes sense. (she's also infamous for the flavor comment, and actually, off the record, said to me before the psychiatric hospital, "dont let anyone tell you this is Autism Spectrum Disorders (ASD)".

    i did have a lot of confidence in the original neuro who strongly ruled it out--in fact, that was actually her longest evaluation to date. 2 years ago.

    the change is whats disturbing....

    i'm going to start a new thread later on our concerta day
    needless to say, if i need to start a thread, it wasnt good... :anxious:
  10. Marguerite

    Marguerite Active Member

    MWM, what you're talking about here is conversational ability (ie social skills) rather than language.

    The "I only want to talk about MY pet topic" is not necessarily connected to language problems, it's a social issue primarily. But I agree - VERY Aspie!
    Everything MWM has said here (other than my nitpicking over language vs social issues) is the best advice. Also the good news - the smarter the kid is, the better they eventually can adapt and mimic normality. Some people call it "losing the diagnosis" but I really hate that because autism in its various forms, IS for life, but when someone has adapted to the point where they seem perfectly normal, you should never dismiss this. Underneath it all there is still the autistic person concentrating the whole time, to maintain that social normality. They will always be a bit quirky, too, as quirky as they feel they can get away with. They need it to a certain extent, to relive their stress. But they find their niche.
    Also as MWM indicated, they will increasingly seek out like-minded people as friends.
    difficult child 1's best friend at school was a classic Aspie, of the withdrawn kind. He was always a big bloke, and his large size plus lack of expression in face and voice had some of the teachers really scared of him. Plus he did crazy things which included demonstrating his lack of pain response. One day he poured lighter fluid over his hand and set fire to it. Or a teacher would walk past and say to him, "Pick up that piece of paper," and instead of rushing to comply, he would stand there, look blankly at the teacher and say, "Say please!"
    Based on an unsubstantiated and untrue rumour, the acting principal told him he was not welcome to return for his final year. He wouldn't tell his mother (or me) why. difficult child 1 finally told me some years later, and it was a grave injustice. The school did the wrong thing, all round. If the school's suspicions had been right (that he had brought a gun to school), they should have called the police. But the suspicion was based on Chinese Whispers rumour - he had brought his Junior Shooters Licence to school, he had a shotgun on his uncle's property which he sometimes used to help keep the rabbit plague population under control, and in his wallet he kept the licence for that gun. A teacher heard the phrase, "X has brought a gun to school," and told the acting principal.

    X has remained a very close friend of difficult child 1's. He was Best Man at his wedding, and I think difficult child 1 will be Best Man at his wedding (coming up in the next year). X's mother was at difficult child 1's wedding also.
    Other friends of my boys - a lot of Asperger's in various forms. difficult child 3's best friend since before Kindergarten, is another boy with autism. Thanks to contacts we have made through difficult child 3's drama class, the kids all worked together on a feature film ("The Black Balloon" with Toni Collette, Luke Ford and Gemma Ward) and more friendships were forged.

    There are some wonderful qualities in kids on the spectrum. Intense loyalty is one. Despite past views that kids on the spectrum were unemotional, we now know they feel emotions intensely. We just don't always recognise it, through the apparent lack of interest. They show their emotions in different ways. Just because someone with autism isn't smiling, doesn't mean they're not enjoying something. When they DO smile, it lights your world.
    They are also generally very law-abiding, but only if the rules around them make sense and can be seen to be implemented. If the rules are being constantly broken, it upsets and confuses them and they will not value rules which are being broken.
    They generally learn not to attempt to tell lies, but this takes more time. They are generally bad at telling a complex lie, plus it often can feel very uncomfortable for them to tell a lie. Over time, the lies ease off as they learn for themselves that truth feels better and frankly is easier. The more you catch them out in lying, the sooner they will morph into truthful beings. But can you handle the truth? It can be painfully sharp sometimes.
    For example, difficult child 3 said to me, just before I embarked on my doctor-ordered diet, "It's OK, Mum. I love you even though you are fat."
    That was his attempt to make me feel better!
    Thanks, son...

    Confuzzled, you said,
    That is something I have noticed - it changes. Not only have stims and tics changed in our kids (sometimes weekly or more often; sometimes decades pass before a stimulant changes) but we find different things presenting.
    easy child 2/difficult child 2 (who we believe is Aspie although doctors won't commit to a full diagnosis, they prefer to say she has "traits" of Asperger's) seems to have become MORE of a problem in the last five years or so. In o ther words, since reaching adulthood, it's become MORE obvious to us. It was like, "Now I'm an adult, I can be myself and stop trying to be normal."
    A lot of her traits were disguised as fun eccentricities. For example, she had (has?) an obsession with furry textures. As a young child, she carried her teddy bear everywhere. When she reached her teens this was not socially acceptable to her peers, so she made a cow-print fur fabric cover for her school folder, then instead of putting her folder in her backpack, she carried it everywhere. Since other girls were decorating their folders with rock group stickers and glitter, easy child 2/difficult child 2's was different and distinctive. She had STYLE. Carrying your folder was a way for girls in her grade to assert their individuality, at a school where school uniforms were mandated strictly.

    Now she is an adult, married and living independently, she gets her fur fix in other ways. First, her husband is very hairy. Plus she won't let him cut his hair. Next, her beloved teddy bear is still in her bed. I've seen him, sleeping in, cuddling her teddy bear. She has covered her couch with a fur fabric throw. Her love of certain textures has extended to satin and other soft fabrics, plus her need to be held firmly has extended to her buying industrial-strength corsets and wearing them, tightly laced. She buys pretty ones in velvet which she can wear over her (Goth) clothes. She looks like a cross between Morticia Addams and Mary Poppins. With red hair and white skin. OK, her very appearance screams, "I am different!" at people, but her intelligence compensates for any weirdness, she is very well-read. But her appearance automatically winnows out who is prepared to approach her and talk - like-minded people gravitate to her, fast. More conservative people are scared off by her.

    She can pass for "normal" in the workplace when she has to. One recent workplace had a uniform like a Swiss maiden - cute little lacy cap, frilly apron, full skirt in stripes - she hated it. So she made her own amusement with customers by trying to pretend she had a natural accent form another country. One day she would be Scottish, another day Irish (she tended to prefer Irish). She was trying to master a Welsh accent. She had French down pat. People were very willing to believe she was Irish, with her looks. The degree of detail she would put in to this, was to alleviate the boredom of her job.

    The problem I have with easy child 2/difficult child 2 is, she doesn't fir the typical Aspie pattern. But I have been told that scientists are now realising that girls are often very different, when it comes to Asperger's. easy child 2/difficult child 2 can do some things which Aspies are not supposed to be good at - she is very imaginative and creative, for example. She is amazing at crafting detailed fictional narratives, stories for children. She identifies with children and I believe in some part of her, she will never grow up, she will always have that Peter Pan aspect to her personality. For someone whose ambition is to be a primary schoolteacher (that's Elementary, in the US) I think that is a quality her students will love.

    But she gets stressed easily, flies apart so fast you get hit by schrapnel.

    Another point of interest for you - easy child 2/difficult child 2 has appeared to be not only perfectly normal (and not Aspie or even ADHD in any way) when she was younger, but was assessed as being a child genius. What we missed, was her intense absorption in some specific topic areas. Her interests were broader, so we missed it. But the intensity was always there and as she got older, it narrowed and became more intense and she became more determined to get things her own way.

    The headbanger stuff - it's maybe a bit like cutting (which easy child 2/difficult child 2 went through a stage of, so did difficult child 1). They didn't cut until their teens, it developed as a result of stress getting out of control and cutting was their way to try to define stress and control it. I think your daughter's headbanging is my kids' cutting. Her headbanging could easily morph into cutting. And they can be very good at hiding it.

    easy child 2/difficult child 2 still doesn't have a definitive diagnosis. She does have a diagnosis of ADD (inattentive type) which has been enough for her to access services in general (in tertiary education - she had zero support at school). Once she is on the books of the college counsellors here, they work with her intensively to identify the specifics of exactly hat kind of support she is asking for. So she's not searching for a more detailed label just yet - it won't change anything.

    What you describe as your daughter "talking to an imaginary friend" - there isn't necessarily anything psychotic in that. If your daughter knows, intellectually, that there isn't really anyone there, but she is just using this as a technique to help herself cope, I wouldn't be too concerned. I sometimes talk aloud to myself and even sometimes visualise a different person in my head, like the classic cartoonish "good angel, evil angel" scenario on each shoulder.

    It is so easy for psychiatrists to see what they're looking for. Especially when dealing with literalmindedness!

    An Aussie Aspie & author, Wendy Lawson (she wrote "Life Behind Glass") was about 19 (I think) when a psychiatrist asked her, "Do you hear voices?"
    "Of course I do!" she replied. "Doesn't everyone?"
    On the basis of that she was diagnosed with schizophrenia and institutionalised for a number of years.
    Eventually someone realised that she was not schizophrenic. Her answer to that question? "Of course I hear voices. They are vocalisations, they are sound, you hear sound, you don't see it or smell it. What a stupid question!"

    It is also possible to have more than one condition.

    Your daughter, if she's Aspie, is likely to be very stressed. She is also likely to be less capable of handling stress. Put those together and these kid can be innovative in the techniques they independently develop to deal with stress. So it stands to reason - even if there is n formal diagnosis, stress management techniques with a therapist can be very helpful.

    I look at your description of your 17 yo as "cooler than cool" and think of easy child 2/difficult child 2. Also, where you have one Pervasive Developmental Disorder (PDD) kid in the family, you increase the chances of traits at least, in others. Or as husband puts it, "Autism doesn't just run in our family, it gallops."

  11. confuzzled

    confuzzled Member

    thanks marg :D

    you made me smile. its funny you pulled that exact quote--i stumbled on it after this all started and would have laid a bet thats exactly what we were seeing. i actually questioned daughter specifically on that exact thing. it was a lightbulb moment for me....except...

    daughter does insist its real, talks to her, sits next to her, and often pokes her. and lives in my guest room. a hair more than of course i hear voices, Know what I mean?? the poking is bizarre. i really, really want to believe its truly imaginary play and a coping mechanism, and an Autism Spectrum Disorders (ASD) trait.

    i'm just terrified its not.

    as for ds...well, lol, he's not on the spectrum but has everything under the sun wrong with him--major congenital anomolies, juvenile arthritis, major allergies, non verbal, and on and on. happiest person i know. and he IS the coolest of the cool (i dont want to put too much info about both kids in one post because if anyone was ever looking they would clearly know its me!). he's a player though...and zeros in on the prettiest girl in the room (often the most endowed, too, ROFL!)

    suffice to say, i'm familiar with a variety of things on the medical and educational side courtesy of him.

    which is pretty much why daughter had services and has been hauled to a variety of docs when she was younger. at some point, when they kept telling me i was "overconcerned", i had to believe them. i've always known there was something (Autism Spectrum Disorders (ASD))...for whatever reason, she fell through the proverbial cracks.
  12. susiestar

    susiestar Roll With It

    Your sig is great. We get a lot of new people who don't use the web much, so we try to ask in a way that helps a person understand if they are new to the internet. The comment about not being a doctor is also because some who are new here think we can give a true diagnosis. Telling you that we are not docs just protects us all, it was not meant to imply you were less than intelligent. I love the sarcastic humor, it fits well with some of us, LOL!

    I have also found that parents are by far the best sources of information. The in real life support groups I have been to for Autism Spectrum Disorders (ASD) tend to be parents without the level of info you found or that we have here. I stopped going because it was a real downer, the parents all talked about the worst of living with a child with an Autism Spectrum Disorders (ASD) and few of them had "normal" expectations for their kids. Most seemed to feel their kids could not ever live on their own or get married or be parents. It was not the right group(s) for me. This group fit better for me. I am thrilled that your in real life support group was so helpful!! Gives me hope that I might find or found a support group with parents more of my mindset (to push my child to be a self sufficient, productive adult who reaches his full potention, rather than focusing on what he cannot do.).

    I am glad you joined us!!
  13. confuzzled

    confuzzled Member

    ROFL susie...

    umm....i didnt say they werent a hot mess, cause trust me, that was the pervasive attitude with both other parents.

    they just had good contacts, LMAO.

    i might go once more to see if more people with address books show up, but i doubt it will be for me....i'm not a wallow-er.

    i do know that i've always got the best info from other parents.....

    i've learned to take what i need, and pass on all the rest.