Another put off

Discussion in 'General Parenting' started by wakeupcall, Apr 29, 2008.

  1. wakeupcall

    wakeupcall Well-Known Member

    This morning difficult child had a psychiatrist appointment for a medication check. I don't know how to get through to her or anyone else that there are pieces missing in this. She asked what I would hope to get out of neuropsychologist testing that I don't already know. How does one answer that? She says regular psychology testing would tell me all that could be told about him and that mental disorders are not definitive, yadda, yadda, yadda.

    IF someone would tell me he's mildly retarded, then I wouldn't push as I do. IF someone would say he's NOT, then I NEED to continue to push. I get so blasted frustrated! Two independent testing say IQ 98/102..the third and most recent said 75. I know it's just a number, but it's significant in what he's able to learn and what he can't!!

    He sat there in the appointment like a zombie....like he was drugged out. I was terribly embarrassed that he behaved like that. If he'd been at school he'd have been in band and having a ball that time of day. (I know....I guess she can see through that!) *Sigh*....it's never-ending. Last month I stopped all psycho therapy because we were wasting time and money with difficult child just sitting and participating very, very little. We've been going EVERY week for 1 1/2 years.

    Oh yeah........our home life just plain s***s! He's mean, rude, argumentive with every sentence uttered, defiant, etc. We never have a whole day that is peaceful....and I mean NEVER. Do you guys get tired of trying like I do? The ONLY difference in him from when he was a toddler is that he doesn't hit me any longer. Yes, that's progress, but that's the only accomplishment in eight years of medications and therapy. He interrupts, makes weird sounds when we try to watch tv or something, he slams every door(hard enough to shake the windows) as he comes in and out of a room or outside, he torments our Yorkies, he jumps on the furniture, he p**ps in his pants, he trashes his room, he sleeps in our bedroom, he has a blankie most of the time he's home (without anyone else around).

    Oh.......................sorry. I bend your ears all the time. I guess I just feel a little better when I can let it out. He's run off any friends, so there's not someone else to listen. I hate to burden my grown daughter and my brother is childless, so what would he know. husband and I just complain to each other....then I have you guys. Thanks for being here. Tomorrow will be another day. :dissapointed:
     
  2. trinityroyal

    trinityroyal Well-Known Member

    Oh Pamela,

    I wish I had some advice, an answer for you, anything.
    I can only offer {{{{{HUGS}}}}}, a set of broad shoulders, and ears to listen.

    Vent away. We're here.

    Trinity
     
  3. tryinghard

    tryinghard New Member

    Pamela,

    I understand. Most of my days the last eight weeks have been spent arguing, complaining, directing, demanding difficult child. I feel bad for him too. Last night he cried and cried. Last night easy child told me our home is "a war zone".

    And I am such a peaceful person....that is all I want for my family..peace and harmony....
     
  4. 4sumrzn

    4sumrzn New Member

    I'm so sorry. I must say...I can't compare anything to the questions that were asked of you "yet". But, when the "home life" part is mentioned.....tired of trying? Yes, yes I do. I don't get hit like I did when difficult child was younger....she "acts it out" trying, but doesn't follow through anymore. Peaceful? Well, that word has taken on a different meaning for me......I have found that asking myself "could it be worse"? makes it peaceful for me, knowing it could be. The interruptions, noises, doors slamming (makes one dog very upset...we're not too happy with it either), constantly messing with one of the dogs (digs in ears, pulls tail, lays on him, tries to pick him up, pulls on legs, teasing...bug, bug, bug). The child is like a tornado at ALL times, including eating! Trashes everything. She doesn't p**p pants (thank goodness) & doesn't have anything special like a blankie (I did). BUT, still makes it into our room EVERY night...sleeps in the smallest little space on the floor....flops around like a fish at times, slamming into dresser & bed......no big deal to her! Just us! LOL!

    Oh... and friends? Hmmmm.....SHE doesn't have any (just for a side note)! Me, I do the same with husband....we complain to each other too. I feel lucky that I have this wonderful place like you do to let it out!!!!! {{{HUGS}}}

    I'm guessing this will not make any sense at all.....took me an hour up & down from the computer. Sorry.
     
  5. Steely

    Steely Active Member

    Did the psychiatrist have any medication solutions?

    Do not give up!!!! I know it is horrible, and it stinks, and it s***s, and a thousand other things! But don't give up. I almost did a billion times. However, something in me kept pressing, and challenging everyone around me, until I got what I thought was necessary at the time for my difficult child. A trillion medication changes later, and a bunch of therapists, we have made progress. My difficult child seems to finally adapting to the world around him.

    Keep fighting the good fight, it is not in vain.
     
  6. Fran

    Fran Former Site Owner

    I do get tired of it. Every day. Then I get up and do it again. It's just like the movie "Groundhog Day". One day I hope I get it right.

    Why would the psychiatric care if you want additional testing? It costs them nothing and answers questions for you. You would think the Dr. would want to help you answer your questions. They have no idea what our lives are like do they?

    Vent away. I know no matter how bad it is you do get up and do it again and again.
     
  7. dreamer

    dreamer New Member

    I am wondering if the doctor does not bother with more testing becuz...when it boils down to the nitty gritty..chronolgical age means little and IQ means little if a person cannot utilyze whatever IQ they might have..and mental illness, mood disorders etc CAN and DO affect ability to utilyze IQ. So, doctor may figure it is moot for now---difficult child is not seeming to hold on to certain lessons anyway.....
     
  8. smallworld

    smallworld Moderator

    Pam, I'd find a new psychiatrist. Any psychiatrist who talks you out of testing when you've hit a brick wall isn't helpful. Believe it or not, our psychiatrists strongly urged us to do testing because it gave them additional insight into our children's strengths and weaknesses. The psychological testing provided information about their world view, their specific worries, whether their thoughts were reality-based or distorted, whether there was mania or depression present. In your difficult child's case, I think this information would be helpful both to you and the psychiatrist.

    Without intensive testing, you don't honestly know if your difficult child has a mood disorder, an autistic spectrum disorder or a disorder from Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). All of these disorders require different interventions so it does matter.
     
  9. Star*

    Star* call 911........call 911

    PamelaJ,

    If you have done all you can do -
    If you have looked everywhere you can -
    If you are tired beyond belief -

    THen what is wrong with finding him somewhere to live with someone who can raise him?

    Dude is happier - or as happy as Dude can be still being Dude.

    I'm happier because while I miss him with all my heart - I don't miss the drama and all it entails

    DF is happier for the same

    Just curious. - WHat is wrong with letting him go to a foster home - if he is NOT happy at your house then he should go somewhere he can be happy or at the least somewhere you can't hear him compliain about you.


    Hugs
     
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I do get tired and worn down. I like Fran's comparison to the movie "Groundhog Day". It's the same thing over and over again. I'm sorry you are so worn out. When you said you never have a peaceful day that resonated with me. I don't remember the last time we had a peaceful day. But... I do get parts of peaceful days by trying to do nice things for me-like working out, reading a book, just vegging with-husband.

    I don't understand the resistance on the doctor's part to the testing. How frustrating. Hugs.
     
  11. Marguerite

    Marguerite Active Member

    Testing too much or too often is pointless, because you're not getting true results. But if you take the tests which HAVE been done, all of them, and dig into the sub-scores, THERE should be your answers. Are his scores in each sub-group similar? Or are they really high in some spots and really low in others? Are there ANY really high scores? Any low ones? If there is a wide disparity, the results should not be averaged out into a single IQ score, because it is meaningless.

    For example - difficult child 1 was tested when he was about 15. He had some very high scores (up to 16 or 17) and some really low ones (one was as low as 6). But they were averaged out and I was told, "He's not as bright as you reckon, he's only a little above average. This means that when you look at how he's actually doing it's not that bad. He may be at the top of the class in one or two subjects, but that is as much as he can do. He'll never be better than average in most of his subjects, and his IQ score reflects this. So his current below-average marks are not such a big deal."

    Interestingly, a different school counsellor said the same thing about difficult child 3. "He's really doing very well, considering his IQ is only a little above average."
    "Since when is his IQ only a little above average?" I asked her. "He was assessed six months ago as having an IQ in the top 1%."
    "I tested him last week," she told me. "I had half an hour spare, so I gave him a quick assessment. And when I averaged it all out, his IQ score came in at 105."

    I did try to tell her - first, she had tested him without my knowledge or permission, or I would have reminded her of the futility of testing him again so soon. Second, you can't get any sort of accurate idea in half an hour's testing. Third, I strongly suspected she had found big gaps in his sub-scores (she did admit this) which meant that averaging it all out with big gaps was inappropriate.

    Of course she just smiled in a superior way; clearly, I was a protective parent convinced I had a genius child and refusing to be convinced otherwise by her evidence.

    So I didn't tell her my final killing argument - I'm going to have more faith in the two-day, detailed testing by two PhD students in clinical psychology specialising in testing students with autism, than in a school counsellor whose training in psychology was perfunctory, at best and who believes that difficult child 3 "isn't autistic any more" because his vocabulary now falls in the normal range.

    IQ testing was not designed to identify ACCURATELY a child with major problems developmentally. It was designed to distinguish between one child and another, in the sub-group of children capable of attending a mainstream school at the time the tests were developed. And remember, back in those days difficult children were generally not in mainstream schools. The tests were also socially and culturally skewed, so a test developed for white US students will be far less likely to give an accurate picture when given to Asian students, for example.

    I remember doing various IQ tests when I was a child. I also remember being given a briefing beforehand, being told to ignore certain specified questions because they didn't apply to students being educated in Australia. Or we were told how to interpret the question (such as recognising that "fall" means "autumn"). An IQ test that leans on being able to spell accurately is going to mark Aussie kids wrong, if the spelling standards use US spelling. And vice versa. But due to numbers of tests published as proportional to population of that country, it was always cheaper for people in Australia to buy the US-printed tests than to seek out Australian versions of them.

    That is just an example, but in general you shouldn't stress over test results being 99, or 101, or 105. They are by their very nature, inaccurate. As a result, their innate error is often quite large. They can give a broad idea, but not much more.

    It's the difference between accuracy and precision. I might measure the length of a piece of string, to be 9.6754 cm. But if the ruler I'm using has no graduations smaller than a mm, this is far too precise. The error HAS to be, by definition, half the smallest division on the measuring device. That means, for a ruler graduated in mm, the error has to be plus or minus 0.5 mm, or 0.05 cm. The measurement of 9.6754 cm, plus or minus 0.05 cm, is ludicrous. It may be accurate, but it is not precise. You should correct the answer to reflect this - the string's length should be described as 9.7 cm, plus or minus 0.05 cm.

    I don't know my own IQ score. Although I and my fellow classmates in my era got tested a lot, the results were kept secret. However, I always suspected I'd scored highly because of the way teachers reacted to me when they first read my records. They almost genuflected (until they got to know me). And I always felt like a fraud, because I was never able to achieve at the level they all expected. I suspect I only scored as high as I did, because I was an avid reader with a corresponding larger vocabulary than usual. I remember one IQ test being administered on a one-to-one basis. I was being shown a series of pictures (four images to a page) and asked to point to the one image out of the four which best corresponded to the word he gave me. One in particular amazed my questioner - it was "tangent". The images were a circle and a line, but only in one image did the circle rest on the line touching at only one point. I only knew the answer because I had been idly reading my maths text book while waiting for the tester to arrive.

    I'm with the others - find a new psychiatrist, one who places less importance in the specific score, but who instead looks at the subscores, as well as your actual observed problems, and says, "let's work from here."

    Marg
     
  12. smallworld

    smallworld Moderator

    I believe Pam's difficult child hasn't been tested in 4 years so I don't think we're talking about too frequent testing. Furthermore, the kind of testing I'm talking about is not just IQ testing (but I agree you need to look at the subtest scores to understand strengths and weaknesses). My youngest daughter is about to undergo psychiatric-ed testing, and only about 3 hours involves IQ and achievement testing (the educational part). The rest involves assessing her psychological state, which is very important for any child with mood issues.
     
  13. Marguerite

    Marguerite Active Member

    Thanks for the distinction - I didn't see the reference to how recent it was.

    My concern was primarily to do with IQ testing and the perhaps too great a reliance placed on the results, as well as the problems from having IQ tests done too close together. We've been told there should be at least two years between tests. But again, that's IQ tests.

    If you examine the sub-scores and want more information than they can give you, you can always have supplementary testing done within that time-frame, to go into more detail. Sub-sub tests, if you will. We did that with difficult child 1 when he scored so low in one sub-test that we wanted to know why. Another psychologist looked purely at that area of concern and said he had another four or five tests he could do, each examining a portion of that area.

    It's like having a blood test where a doctor is looking at a smear of your blood on a microscope slide. A half-hour IQ test is like holding the microscope slide up to the light and trying to see with the naked eye, enough detail to make any kind of diagnosis. Perhaps, at a stretch, you could say, "the slide looks a bit pale, you might be anaemic," but frankly, you just can't see enough to be sure.

    Or for a more appropriate test, one which goes for a number of hours, it's like the doctor putting the slide under a microscope at 300x and then using a counting grid to say, "You have W number of red blood cells and T number of white blood cells, therefore you are not anaemic, but the white count is slightly elevated which indicates a possible infection."

    Or for the really specialised tests which only look at one particular area - the doctor hands the slide over to a haematologist, who examines it more closely and says, "of the white cells here, your monocytes (one kind of white cell) are showing abnormalities which are indicative of a particular form of leukemia."
    Or the specialist could look in even more detail at even higher magnification (under an electron microscope, for example) and say, "when we really look into the fine detail of your monocytes, I can discern some defects in cell membrane function which could account for the abnormalities we've noticed at lower magnification."

    Of course,while he's looking at a single monocyte under the electron microscope, he's not looking at anything else.

    The capacity for detailed examination is there in everything. But you should only look if there is a need. To look with that degree of detail, at everything, takes too long. You should only zoom in on the areas of concern.

    In difficult child 3's case, the psychologist discovered a problem for difficult child 3 in transferring information from one point to another. While part of that problem relates to difficult child 3's poor short-term memory, another part COULD be fixed - difficult child 3's vision. With reading glasses plus special prisms to make his eyes work a bit harder, difficult child 3's information transfer rate improved.

    As smallworld mentioned, there are other test procedures which also should give you valuable information. Her psychological state is also important, because the smartest child in the world won't do well if she is deeply depressed or lacks motivation.

    Marg
     
  14. wakeupcall

    wakeupcall Well-Known Member

    Sitting with breakfast surrounding me (comfort food?), I made a chart of difficult child's scores; 1/04, 11/04, and 11/07. I plotted all his sub-scores because I, too, think they are most important. There's a HUGE discrepancy in his digit span (for instance) from Jan. '04 at 12 (administered by a professional) to Nov. '07 at 5 (intermediate school diagnostician). I think the only way for me to try to weed out the truth is to have an independent test done.
     
  15. witzend

    witzend Well-Known Member

    I don't really understand the neuro psychiatric test, so I don't have any advice particular to that.

    I think if I were in your shoes I would worry that perhaps you have gone as far as you can with this psychiatrist. After all, that professional relationship has to be built on trust with your most innermost workings and those of your difficult child's. If difficult child isn't participating in the therapy, it's throwing good money after bad to continue.

    I saw the same types of behaviors with M at around your difficult child's age. I found out later that he and his friends were doing some street drugs. I really don't know how much it was, because he was such a liar. I think in your case that after 4 years, further testing seems reasonable. He was only 8 when he was tested before. That's a huge age difference as far as mental maturity goes. I would also ask for a tox screen on him, but I wouldn't tell him why they were drawing blood. It would be a breech of trust if he actually isn't doing recreational drugs. But in my humble opinion, it would be better to rule it out than to wonder. Just as you would want to rule out a brain tumor or encephalitis.

    I am so in awe of all you folks who adopted children at birth, and have found that there may be family illnesses or previously hidden birth defects that you were unaware of. You keep going and I know that must be hard when you really don't know the whole background other than what little bit you were clued into.
     
  16. pepperidge

    pepperidge New Member

    Pamela,

    Particularly with IQ testing in that range, and all the other issues that you describe, fetal alcohol keeps jumping out at me. while I am not one to believe that diagnosis's necessarily make a big difference, I do think that if there is some Fetal Alcohol Syndrome (FAS) component, it will guide what you can hope to achieve in a lot of domains.

    I would think that neuropsychologist testing might be enlightening, because it may reveal some specific issues that could be addressed. My Fetal Alcohol Syndrome (FAS) child, for instance, has a huge problem remembering what he has learned. He can learn it, but it the next day it is out of his head. He needs far more repetition of concepts. And I am better armed in the IEP discussions now.

    Also he is much harder to medicate than my oldests more BiPolar (BP) type child. We have had some luck actually with Zoloft with my youngest -- I was real reluctant to go there, but it has helped with his getting stuck on things.

    Anyway, just some thoughts. I am sorry you are going through what you are going through. It stinks. I know. Got to go get the little lovlies up for school. More later.

    P.
     
  17. wakeupcall

    wakeupcall Well-Known Member

    In this part of TX, the psychiatrist does nothing but manage medications. Therapists do testing and of course, no medication management. difficult child sitting there staring out the window wasn't unusual, I guess...just pi**es me off. The psychiatrist thought nothing of it....suppose she sees it often, but still....grrrr.

    Yesterday the psychiatrist didn't have in difficult child's records the most recent testing done by the school in Nov. (I screwed up) This morning I faxed it to her and she's already called me suggesting we DO have independent testing done asap. She thinks schools end up manipulating it anyway. difficult child has had three tests done, one independent and two by the school so far. The independent was done in Jan. of '04, so it's time.

    We have considered Fetal Alcohol Syndrome (FAS) before, though the bio mother said she didn't drink. I know for a fact that the bio father did, so who knows. Even when we took him to TX Children's Hospital for testing they mentioned the possibility.

    Star*, I really do understand what you are saying about a foster home. That is absolutely not an option. We already live every day without one of our children and.....well, it's not an option, period. Thanks for thinking of all of us, though. We'll muddle through this and do the very best we can.

    Isn't every day interesting?
     
  18. smallworld

    smallworld Moderator

    I'm glad the psychiatrist is recommending new testing. I hope you get some answers that give you new direction.
     
  19. Nancy

    Nancy Well-Known Member Staff Member

    Pamela,

    I understand and often feel the same way. You and me....we are the same age, we both have older easy child's. We both adopted our difficult child's at birth. We are both struggling beyond belief trying to do the right thing by them and leaving no stone unturned. We are both so tired and our home lives are in shambles.

    We have told our difficult child that in 13 months when she is 18 she is welcome to live on her own, or she is welcome to live with us until she get settled if she can follow our rules. It is her choice at that point.

    Hugs,
    Nancy
     
  20. pepperidge

    pepperidge New Member

    Hi Pam,

    When we adopted our youngest, we were told birthmother did not drink. Yet we have a Fetal Alcohol Syndrome (FAS) child (diagnosed when he was abourt 18 mos). So I do not obviously believe we got the truth, and in fact, it doesn't take too much alcohol to produce children with some aspects of fetal alcohol. It is a spectrum issue. Unfortunately, it is kind of a depressing diagnosis because it is organic brain damage that isn't going to go away. Some of the more severely afflicted children have what seems to be almost Reactive Attachment Disorder (RAD)-like behavior.

    There is much on the web that will tell you about the characteristics of Fetal Alcohol Syndrome (FAS) children, but relatively less about what to do about it.

    Anyway, don't know if it fits your case. I would definitely get neuropsychologist testing because if there are issues about brain damage it is useful to understand as precisely as possible what the deficits are.

    Some days it is hard to derive any joy being around our children. I get worried when I have to complete forms that ask you what are the five best things about your child and I can only think of one thing to say. You sound completely worn out and exhausted. I don't have any words of advice, other than to figure out what you need to do before all the joy is completely extinguished in your life.

    hugs
    P.
     
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