newbie delurking

Discussion in 'General Parenting' started by idohope, Jul 16, 2009.

  1. idohope

    idohope Member

    My daughter is 11 and has been diagnosed with an unspecified mood disorder and ODD.

    Some background: Development was normal. She walked at 10 months, talked on time, interacted well as an infant. Evidence of sensory issues from an early age. She never liked being in a car seat and riding in the car has been a source of stress for 11 years, has to sit in a certain seat adjusted a specific way, the seat belt does not feel right and she often tries to ride with it so loose that it would not protect her in a crash. Clothes are also an issue (she currently does not wear underwear because there is no pair that is comfortable to her).

    When she was 3 or 4 we noticed that she a tendency to have very strong tantrums but assumed she would outgrow them. She had them at home but never at preschool. Tantrums started at school the first week of Kindergarten. She continued to have tantrums at home and at school thru K and first grade. She no longer tantrums at school but does at home. At home tantrums could be over riding in the car, or doing a family activity that she did not want to do, dinner time, food choices etc.

    When she tantrums she will cry loudly and stand right next to me and sometimes push me with her body. She tantrums for up to 1 hour and it is very difficult to escape her during this time. She will not go to her room. We have tried physically putting her there and holding the door closed but this has gotten dangerous as she gets older and stronger. I have sometimes locked my self in my car as it is the only way that I can escape from her standing right next to me yelling/crying during a tantrum. She has started to pull my hair and has slapped me a couple of times.

    During the school year we have 1-2 mornings a week where she refuses to get on the bus to school, she has a major meltdown/tantrum and we wind up driving her late with her crying. It mostly comes out as defiance but there are times when it comes out as “I just can’t do this”. She seems to be OK once we actually get her into the school. I have checked with the principal on several of these days and am consistently told she is doing fine. She also refuses to go to doctors for physical ailments. We need to bribe/force her to go if she needs medical care. It is very difficult to get her to take medication even if she has something like strep throat and is pain.

    The summer before 2nd grade we contacted her pediatrician who recommended that since she had tantrums at school we initiate testing thru the school and he wrote to the school requesting testing and that she be evaluated for an IEP. The following tests were performed via the school: WISC-IV, Behavior Assessment System for Children-2, WIAT-II, and an evaluation by the school Occupational Therapist (OT).
    The school findings from the tests indicated that she has some sensory issues, and significant variability on the subtests of the WISC-IV (range of 67th to 96th percentile) and the WIAT-II (range of 59th to 96th percentile); there were behavioral issues that were identified as at risk or clinically significant. The schools conclusion was that she was performing at or above grade level, had stopped having tantrums at school, and did not need an IEP.

    We then went thru a succession of tdocs outside the school system. One would not work with difficult child but told husband and I to read two books with totally opposite approaches and pick the one that we thought would work the best. We started with another therapist. difficult child did not want to go and we initially took her there by force and the first couple of sessions were spent with her tantruming for the hour. I was able to get her to agree to come for a 10 minute session and we were able to work that up to 1 hour (if I sat with her) but she would shut down whenever the therapist tried to get her to discuss her emotions or behavior. Six months after we started that therapist closed his practice. I requested a clinical summary and it stated the diagnosis was an unspecified mood disorder. Our current therapist saw difficult child once (we dragged difficult child to an initial meeting) and diagnosed her with ODD. Working with husband and me, therapist has been teaching us PCIT (parent child interactive therapy) and has established a behavorial modification system. There have been some improvements but I feel something more needs to be done but I am not sure how to get there and what my next steps should be.

    I know from reading this board that the ODD is describing the symptoms and is not a diagnosis of her underlying problems. I feel that she struggles with sensory issues and with anxiety (but know that I am not capable of diagnosing).

    She recently had some physical medical issues and dealing with that put her in tail spin. We had about 2 months of daily tantrums and she is finally coming out of that and the tantrums are lessening to a couple per week. difficult child is adamant that she likes her behavior and she does not want to change. She says she will not see a therapist. We have never mentioned psychiatrist to her and have actually scheduled and then canceled appts because we could not figure out how to get her to go or how we would ever get her to take medications if prescribed. I don’t even know how a Neuropysch would be able to evaluate her when mention of a doctor visit can trigger a tantrum.

    Some specific questions:
    1)Do you think it is worth finding a neuropsychologist to review the testing that we have from 2nd grade and see if they can determine what are specific issues for her without actually seeing difficult child?
    2)Do you think I should bring her to a neuropsychologist and that a good one will find a way to test her even if she is refusing and tantruming?
    3)Although I am willing for some short term worsening of her behavior for long term gain I worry that forcing her to go to appointments is doing more harm than good. She tells us that we don’t love her and want to change her and her tantruming increases for days around an appointment. Are therapist and psychiatrist appts something that we impose our will on her about?

    Thank you all in advance.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Big "YES" to the neuropsychologist. More is going on with her than has been found out and that the school will find out.

    But a neuropsychologist won't just look at someone else's work and give you an opinion. He will want to evaluate your child, and in my opinion it will be well worth it. Her tantrumming will be a clue to what could be wrong with her. A good neuropsychologist tests from 6-10 hours and does not form conclusions in advance of the testing. I was impressed with the sorts of tests our neuropsychologist gave my son. No other professional had been that thorough and he didn't stop until he had tested for every area of functionality. In the end, he was t he one who diagonsed my son correctly and that's when all the wonderful progress began. Before that, he was just put on a ton of medications with a bunch of alphabet soup diagnoses w hich meant, "Don't really know!"

    If you go to a neuropsychologist, you will have a better idea of what type of therapist can help your child. I've been to at least twenty myself (I have a serious mood disorder) and, trust me, some of them are worthless, some make you feel worse, some are good--in my opinion the ones who focus on cognitive therapy. You can make a better decision when you have a better idea of what is really going on with her. Misdiagnoses is common and can be horrible for the child and her family.

    Good luck :D And welcome!
  3. SRL

    SRL Active Member

    I know on the surface this looks like defiance but to me it has anxiety written all over it. For kids with anxiety and sensory issues, places like school and doctors offices can be excruciatingly painful.

    I'd strongly encourage the neuropsychologist appointment. If there are more issues that haven't been surfaced (and I wouldn't trust the school district or a therapist on that) then you really are shooting in the dark as far as a treatment plan. I'd have no qualms about bribing a child to go to an important evaluation.

    How is she doing socially? Does she have similar interests as girls her own age?

  4. Nomad

    Nomad Guest

    A few quick thoughts, you are always free to get a second opinion...although I know that is exhausting once you've already been through a lot of testing. Sometimes things are not clear early on, but later become more evident as a child matures. It might be a good idea to double check with a NeuroPych.

    Make sure she has understanding and patient teachers as she progresses through school. You might want to do at least a little volunteer work. Do not "baby" or enable your daughter, but perhaps provide a little gentle assistence/support for now to help her get through this and also for you to explore what is going on. Again, let her do what she can do on her own. Praise her for her accomplishments.

    If you are taking her to a t-doctor, make sure that this person is somebody she really likes. Are they doing play therapy? Are you doing any Family Therapy as well?

    Please make sure to nurture your relationship with your spouse. It will be very important for your child to see that you and your spouse are a united and loving couple. Provide clear boundaries for her to follow. Additionally, encourage her to have some close playmates from school, etc.

    Wishing you well.
  5. busywend

    busywend Well-Known Member Staff Member

    Absolutely on the neuropsychologist evaluation. Yes, a good one will still be able to evaluate her - even if it takes hours. I would suggest a longer appointment than usual when you book it. Explain the tantrums and the possibility it could take extra time for the doctor to really see her without a tantrum.

    I agree sensory and anxiety issues are seemingly the cause of her tantrums. This is since birth she knows what she can and can not tolerate.

    Heck yeah you want to change her! LOL! I know it is hard to hear your child say that to you, mine says the same thing. I finally told her that I did want her to change, her behavior not her inner beauty. Play it up! Be very honest and direct.
    Yes - we do want to change your behavior. The tantrums are not pleasant or fun - for anyone.
    Yes - of course we love you, which is why we want your behavior to improve - so others can love you, too. Don't you want people to hang around and places to go when you are older?
  6. lizanne2

    lizanne2 New Member

    I wanted to add my support. Everyone is right on track! Similiar stuff to my difficult child at the early ages.

    I will say that we saw many different docs all with varying degrees of success. It took a while to find a doctor who could explain my child to me and I believed her and understood was a breakthrough for us.

  7. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Ido - welcome to the site. Glad you delurked and joined in our discussion.

  8. idohope

    idohope Member

    Thank you all.

    To SRL: She does pretty well socially and has friends that she interacts with. Seems interested in the same things they are like bike riding, webkins, nail polish, talking on the phone. Most of them have witnessed at least the start of a tantrum if not a full meltdown but seem fairly forgiving of her behavior at this point. I anticipate this will change in the coming years. She is very athletic and is involved in several sports. For the sports, getting ready to go and the transition to get there can be a nightmare but she is fine once there.

    To Nomad: difficult child does not currently see a therapist. husband, myself go regularly and easy child 1 comes occasionally to get support. We do PCIT with difficult child at home. difficult child refuses to go and we would have to literally carry her in the door to get her to the therapist.

    Although they determined an IEP was not needed, the school has been careful about the teacher selection and I appreciate that. I think having seen the tantrums in first grade (and having had to remove the rest of class from the room when they could not physically remove or calm her) they realized what they could be in for with the wrong teacher. LOL

    I also really need to take the advice about husband. Our relationship has definitely been put on a back burner and we have not always been on the same page but we now both go regularly to therapist and are both reading a couple of the Ross Greene books. I will work on the nurturing the relationship.

    Based on your posts it seems like if I were to get difficult child to see someone at this point it should be a neuropsychologist and once we have a better understanding of the underlying issues we could better identify the right therapist.

    Thank you again for all the supportive replies.
  9. TerryJ2

    TerryJ2 Well-Known Member

    Hi Ido, welcome.
    I had to chuckle at Wendy's response, because I had highlighted this to comment on:
    She tells us that we don't love her and want to change her and her tantruming increases for days around an appointment

    All you have to do is change the word "and" to "therefore" and you are in agreement with-one another. BECAUSE you love her, you want to change her.

    I agree, she has anxiety issues and is very easily stressed out. I also agree on the neuropsychologist evaluation.
    Yes, it will be easier to chose an appropriate therapist once you have a handle on a good diagnosis.
  10. Babbs

    Babbs New Member

    You mentioned that she had an "Occupational Therapist (OT) evaluation" as part of the school evaluation. What were the areas evaluated? Occupational Therapist (OT) means occupational therapy but different OTs evaluate different areas. I noticed sensory processing was mentioned, what about motor skills, functional self help skills, social skills, and executive functioning?

    Being that your daughter didn't qualify for special education in the school system, she wouldn't be receiving direct Occupational Therapist (OT) services for any of the above areas in school but have you considered taking her for evaluation and services through a private practice Occupational Therapist (OT)? Much more easily obtained for most people (even with "average" test scores many times a private Occupational Therapist (OT) can work with a child who has 1 or 2 specific skill deficits).

    If your daughter is being overwhelmed by sensory stimulation, then often the nervous system is operating on fight, flight, or fright mode all the time. Kids can often handle the overload at school by focusing full effort on it to "fit in" etc, but are exhausted by the end of the day which makes it worse at home. Some outside support from an Occupational Therapist (OT) maybe helpful.

    You mentioned being concerned that forcing her to attend appointments may be doing more harm than good. My question is do you think she'll be able to be successful in school, home and in her community long term without intervention? If the answer is yes, then don't do it. If the answer is no, then you'd be doing more harm by not making the visits happen.

    Finally, you mentioned that she says that you don't love her and want to change her. Wow, what a manipulator at such a young age! (Like many of our kids.) Many of our kids resist change and actually perceive change as being physically painful. Have you approached it as that you're not trying to change her? That you're trying to find a way for her to have different strategies to deal with different situations to make life easier for her? I know my difficult child was resistant to counseling for a while until we realized we were sending the message that something was wrong that needed to be changed. difficult child's attitude changed when we switched counselors and explained that we were trying to find someone to help teach difficult child a wider range of skills to use when angry, lonely, overwhelmed etc.
  11. susiestar

    susiestar Roll With It

    Welcome! I read this last night and have been thinking about my response. It sure sounds like you have a difficult child.

    I think a new neuropsychologist evaluation (including having old testing reviewed and any new testing the neurospych recommends), a PRIVATE Occupational Therapist (OT) evaluation and therapy, a therapist she LIKES, and some issues you are willing to fight tooth and nail over are called for.

    I can't say she needs medication for sure. I suspect that it might really help her, but I am not a psychiatrist. I would make it policy that if she balks at medications she loses everything until they are taken. She sits at a chair at the kitchen table and cannot do anything else until she takes the medications. NOTHING. It will be a vicious fight, but it will be worth it in the long run. Explain ONCE that the new policy is that you will get the medications and give them to her. She will take them. If she says no then she has to go sit at the table with NOTHING to do/eat/drink/watch and no one talks to her except to see if she has taken her medications. Tell her that medications are an adult decision. If she feels odd or bad after she takes them, you will listen and evaluate if they need to be continued or stopped. But SHE will take any medications you give. Period.

    This NEEDS to be a big deal for you. medications may very well make her life better. medications could SAVE her life (the suicide rate for kids with bipolar is staggeringly high). If she gets sick with strep or something and won't take medications she can end up truly ill. Dead type ill. Whatever reason has her refusing to take medications, it should NOT be accepted. I don't know if she is bipolar, haven't a clue, but it is still a risk. I used to have to break up capsules of antibiotics to divide them into doses for my youngest. He can't tolerate the artificial sweeteners in kids medications. I poured the dose into a spoon and then put a half teaspoon or so of chocolate syrup into the spoon and stirred it with a toothpick. thank you got to lick the spoon until clean. If it was a really nasty tasting medication he got a second ahlf teaspoon of chocolate syrup if he didn't complain before he took it.

    Maybe you can use m&m's to teach her to swallow, or use sprinkles in chocolate syrup to practice taking medications. BEcause what happens if she really NEEDS a medication and you are alone with no one to help you force them into her? As she grows it will become a bigger and bigger issue unless you do your best to stop it now. That is ONLY my opinion.

    As for school deciding she doesn't need an IEP, well , I would send a letter formally requesting another evaluation. It MUST be sent certified mail with signature confirmation. This puts legal protections into place for her. It also establishes a start date for the timeline. Schools have a certain number of days from the date the letter is received to get her tested and to schedule a meeting. I am willing to bet that she needs an IEP. For more on this check out the Sp Ed 101 forum. The mods there are incredible.

    She is a few years older than she was when the evaluations were done. At her age the change over those years is pretty dramatic. New things will likely show up. this give you more info to help figure out exactly what help she needs. A new neuropsychologist is very much needed. Same for the private Occupational Therapist (OT) evaluation.

    Don't rely on the school testing. They only test for a few things, not how everything in her life is impacted. They focus only on how academics are affected. A private Occupational Therapist (OT) will test for all the sensory problems seh shows. I totally "get" the refusal to wear underwear, anything tight around my waist is painful. If you can find out what her sensory issues are you can do a lot of things to help. They will help in ALL areas of her life. In other areas you should also not trust school testing or their interpretations of the results. Often they don't know what they are talking about, from my experience.

    As nebulous as her diagnosis is, I strongly recommend writing a parent report. It is a way to organize and present all of the problems and gifts she has, all of your hopes and dreams for her, all of the things you have already done, and all of the testing that has been done. Some parents here developed an outline for it. My only addition to their outline was to add photos of my difficult child at the front of the report and at the befinning of each section. I used a big one for the front of the report and smaller ones at the start of each section. I didn't use a 'real" photo, I just taped it on the master copy and xeroxed the photo on other copies.

    Here is a link to the Parent Report:

    I want to recommend some books. Many are in libraries, but you can also order them from amazon or from some of the online used bookstores. Sometimes you can find them in regular bookstores, but I haven't always had luck with that.

    The Explosive Child by Ross Greene is essential - it gives you a whole different way to approach parenting, because the traditional method just doesn't work with difficult children.

    The Bipolar Child by Papalous is essential reading for anyone with a child with a mood disorder. It explains a lot and has vital information about how the brain works and how kids present very differently than adults.

    The Out of Synch Child by Carol Kranowitz is going to be the best way to understand what your daughter is going through when she can't stand the feel of her clothing, or the taste of something, or needs to sit on her head on the couch to watch tv. It also describes ways to help this kind of problems, including one technique that is proven to rewire how the brain handles sensory input.

    The Out of Sync Child Has Fun is also by Kranowitz. It is packed with fun things to do with your difficult child. The activities provide various kinds of sensory stimulation that she needs. Best of all, many of them are very cheap or have ways to modify them to be very cheap.

    Have a good weekend!
  12. graceupongrace

    graceupongrace New Member


    Welcome. I'm pretty new here, but have found many helpful answers -- and learned many good questions to ask!

    She tells us that we don’t love her and want to change her

    My difficult child often plays the "you don't love me" card, or its variant, "I know you hate me." The reality is that our difficult children unload everything on us because they know that we'll love them no matter what. That line is designed specifically to yank your chain.

    The key is to avoid getting defensive. When I hear that, I calmly say, "Oh. I'm sorry you feel that way, because I do love you." Or I'll say, "Really? How would things look if if I loved you? What would be different?" When I refuse to react to that manipulation, it takes all the fun out of it! ;)

    As far as taking medications, I've made it clear that that's non-negotiable. On the few occasions my difficult child has started to resist, I've pointed out that until he is 18, I am legally responsible for his health care. He could not go to a doctor or hospital and get treatment without my consent; neither can he refuse medications. As I'm sure you know, it's really important for you to understand any medications and how they work if you end up going that route. Not long ago, my difficult child tried to tell me and the psychiatrist that the Vyvanse (stimulant for ADHD) wasn't working. I explained that I could see a clear difference in his behavior before and after he takes his Vyvanse. And psychiatrist showed him test scores with and without medications. That stopped him in his tracks, and he hasn't complained since.

    Hope this helps!
  13. Lothlorien

    Lothlorien Active Member Staff Member

    I agree with the others that a neuropsychologist appointment is crucial. My daughter has anxiety also....even with things that are fun and she wants to do. I don't tell her anything about what we are doing until just before it happens. This way, the build up and meltdown doesn't occur. I'm not sure that will still work when she's 11, but maybe you could try it. Don't tell her where you are going until you get there.

    Here is a link to info about doing a parent report. This will help the doctor out.
  14. idohope

    idohope Member

    Thank you Babs, Susiestar, Graceupongrace, and Lothlorien and the others who have responded with such detailed and thoughtful replies.

    Babs asked if I think she will be successful long term without intervention. Of course, I dont know. Somedays I think it could go either way. I do think that there is a fairly narrow window before puberty hits and I worry that she could being headed to a very bad place if her issues are not addressed before there is a wide variety of self destructive behaviors available to her.

    To the others: Thanks for your advice about standing strong about the medications and doctor visits. Sometimes you get worn down and dont think you could stand up to the battle. But I know that I can do what needs to be done. Lurking on this site has been a help and now joining will be an even bigger source of support.

    Thanks for the books suggestions. I will read the ones that I do not already have and get started on the parent report.

    Thanks again.
  15. susiestar

    susiestar Roll With It

    Hope, we ALL know that worn down, exhausted feeling when we just don't feel strong enough to handle something, even if we know that whatever it is, it is vital. You are not alone with this anymore. We are here with you, and will be here for support for as long as you want.

    There are ways to relieve some of the stress and tension that go hand in hand with her anxiety. An Occupational Therapist (OT) evaluation can help with this a lot. They will also help with the sensory stuff. There are a few "quick and easy" things that can help if she is getting tense . One is to ask her to stop and breathe with you. Long slow deep breaths, with her hand on her belly to feel it rise and fall. Count to 5 on the inhale and 5 on the exhale. Another is to reach out and gently rub her ears. The top and side of the ears as well as the earlobe. Be gentle and don't force it. You might try it when she is calm to learn how to do it and to show her how good it feels. Then have her try it on you, if she wants to. It makes all of us into jello. I never use it in the middle of the rage or meltdown but if I can catch a kid before they get that wound up, it can help.

    Work with her to develop a signal that is just between you and her to tell you when she just cannot handle any more and needs to go. Or to have music or whatever stop if she is at home. You will have to work with her so she learns not to abuse it, but it is a valuable tool. Then explore things in the books by Kranowitz to see what will help her in a meltdown.

    Just remember that the docs are experts in their field of study. Children are NOT fields. Moms are the experts on kids. Moms carried them under their hearts for many months. Moms carried them in their hearts while they waited and worked through an adoption. Moms spend hours and hours each day with kids. Docs study fields. They spend very short amounts of time with individual kids.

    So who do you trust to guide you through this maze? (besides the other moms here, of course ;);) ) You trust the docs to give you information and informed opinions. You trust your mommy heart and your mommy instincts to guide you through the tough decisions. The big mistakes I made were always when I ignored that feeling that something was wrong. Trust that feeling - it is there for a reason.

  16. graceupongrace

    graceupongrace New Member


    I just want to add that you are wise to seek additional help at this age. My difficult child was about your daughter's age when the troubles really began to escalate. He didn't have the sensory issues, but we endured frequent and increasingly horrible meltdowns.

    We are by no means out of the woods. Thee are still many days when I feel worn down and don't think I can stand up to the battle. We are on a journey that involves ups and downs, trial and error, and evolving diagnoses and treatments. But I can honestly say that had we not begun to address the problems at age 11, we would be in an even more difficult spot today. Having a difficult child is like having a typical teenager x 10.

    I hope that we can provide some help -- even if it's just to provide an ear so you can vent, a shoulder to cry on, and the assurance that you're not a bad parent and you're not the cause of the problems.
  17. Marguerite

    Marguerite Active Member

    Welcome out of the dark...

    You asked some questions.

    1) Yes, organise the neuropsychologist. You need someone to really take a good look at her. But you also need her on side with this, to make it easier for everyone. Also to make it easier - get copies of all past tests, as much detail as you can. Don't worry if the tests are out of date or contradictory - so much the better. With the past tests like WISC etc, you need the sub-scores especially. These tests have separate sections and each one has its own score, between 0 and 20 (although either 0 or 20 is unrealistic and frankly, useless). For a "normal" person, most of these sub-scores should be only two or three points apart. Where you have wider discrepancies, more than 6 or 7 points apart, you have clear indication NOT of someone who is faking being smarter in some areas, but someone who is having trouble in some areas and who desperately need help. The higher score areas indicate the person's true abilities, where the other scores SHOULD be. A wide range often indicates someone who is smarter than te test average indicates and who is being held back in some areas; such a person is often frustrated with themselves, has poor self-esteem, often has a lot of issues with anger, raging and discipline. Taking this along with the other things you report, especially the sensory stuff, and I do strongly feel Pervasive Developmental Disorder (PDD) needs to be looked at. Not autism full-on (no history of language delay), but maybe Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified. Also what a lot of therapists are still learning - Asperger's presents differently in girls. It can be very difficult to pin down especially the brighter the child. Because a brighter child is more capable of learning how to blend in and adapt. Adaptation is what we all do as we learn to grow up and develop our social skills as well as learn how to just plain live in the world. We learn what sells.

    Past testing also shows the pattern of what was measured on the day. her degree of cooperation (or not) is also highly revelant. A lot of testing depends on the tester and how rigid (or not) they are, as well as the person being tested. School testing is useful as a starting point and if you're lucky, they do a good enough job to not need anything further. But too often the schools do a perfunctory job and analyse it badly. difficult child 1 was assessed by his school counsellor when he was 6. He was anxious, fidgetty and was unable to complete the test (but it was scored as if he had - crazy!). The school counsellor said that his score was very low, it put him in the mild mental retardation range. However, he was actually achieving in te top quarter of his grade - how could this be? They had to attack me (there was political stuff at the time making me a target for the school counsellor) so the analysis was NOT that the testing was an underestimate, but that difficult child 1 was achieving higher than his capability because I was "pressure-cooking" him. What they didn't recognise - NO child can achieve better than their capability. If you can achieve it, then you are capable of achieving it.

    A more common finding, even in a child who scores well, is a child who is under-achieving. If the testing is also an underestimate, then you risk not recognising a child who is underachieving because they are gifted but learning disabled. Some people might not think it's a problem if the child is still doing OK, but that won't last.

    The issue with education access - every child deserves the chance to not only achieve, but to be able to achieve to the best of their ability. If your child is doing OK but acutally has the capability to do brilliantly, if only... then the school still has a responsibility to step in and make that possible, if there is something they could do to help the child over a learning difficulty.

    For example - a child may have problems with handwriting, it causes a lot of pain because of perhaps a broken bone. The child has been doing well before this but there is an exam coming up. The child has already done well enoguh throughthe year to pass well, but is it fair to deny that child access to a scribe, or some other way of assessment other than handwriting, in order to fully demonstrate his/her capabilities? To just leave the child to struggle and therefore not be able to demonstrate his/her capabilities in that final exam, is to not do justice either to that child or to the rest of the class. Imagine how it would feel both to the child who missed out on first place due to an unfair exam conditions, as well as the child who DOES score first but knows it should have gone to the smarter student.

    You say she's doing OK socially - that's really good. But will this last, and is it as good as she should be doing? At her age it's easier to slide through. difficult child 1 had great friends at this age. As he got older though, it became more obvious that he was a bit weird and his friendship base changed to the outcasts.
    easy child 2/difficult child 2 at times went a bit off the rails with friends, she tended to side with the underdogs which sometimes meant she was associating with the real misfits. Some kids are underdogs for a reason and easy child got into a bit of strife at times by hanging out with girls she actually didn't like much but felt sorry for.
    Later in high school she was popular and is still in touch with old school friends. However, we are convinced she is Aspie. It's not just about having friends - your daughter's friends sound very understanding of her, but her behaviour IS socially outside the norm. And that is an important factor here.

    Now to your daughter's refusal and tantrumming. I agree, she sounds very anxious and is having difficulty also with frustration and self-esteem. As you're already reading Ross Greene (I presume, Explosive Child?) then you probably already see that she needs to feel in control. Often we as parents see our role as to assert control, that if w give control to our children then we are abdicating our own position. But that is not necessarily so - our role is to guide our children, not to drag them. A strong-willed child can be taught to use that will for self-discipline and self-control, rather than using it to fight us trying to control her (or him). And since our ultimate goal as parents is for our children to be happy and independent, we can use this to short-cut that part of the process.

    I can't do this for you, all I can do is tell you what has worked for us. We keep difficult child 3 feeling like he has a say, we keep him involved in the process. If he has to see a doctor we explain why and ifhe refuses we ask him for his input into another way. For example, difficult child 3 had a bad cold with fever and sore troat. I said, "We need tosee the doctor."
    difficult child 3 said, "I'm too sick to see a doctor."
    I said, "it is when you are this sick, that a doctor can help make you well faster. A doctor can tell us what to do to make you feel better and can also check to make sure it's not something nastier that could get worse if we just leave it."
    difficult child 3 said, "I'm too sick to get dressed, I just want to go to bed."
    We didn't have the option of a house call so I said, "That's OK, just put this rob on, it wraps around you like a blanket. And pull your ugg boots on, they will keep your legs warm and comfortable. You can lie down in the doctor's rooms."

    So he went, and lay down on the doctor's couch. The doctor came out and saw him, did her prod and poke, checked the bits she could get to. She wrote a prescription for antibiotics (luckily difficult child 3 is OK with medications) and told us to keep him hydrated and dosed with antipyretics.

    Another time - difficult child 3 didn't want to see the doctor but long experience of knowing that HE gets to tell the doctor what is wrong 9which gives him control) and I will only speak up to keep him on topic or to add anything I feel he may have left out - he was OK with it. Until the doctor said, "I want blood tests."
    "Whao! Wait a minute!" difficult child 3 is not good with blood tests. He had a ganglion surgery a few years ago and needed blood cross-match before the surgery. We walked in off the street for the bood test, I quietly warned the technician of difficult child 3's anxiety but she blustered through it and it was a disaster, difficult child 3 was cooperating but his body couldn't cope, the adrenalin washing thorugh his body shut down his peripheral vascular system and the technician couldn't get blood out of him. Not without half an hour of trying this and that and finally coaching him to breathe slowly, so that with each breath out, we got another few drops.
    SO when the GP ordered blood tests we talked about it. "We need to know wat your body is doing," I said. The informaiton will be important, it will tell the doctor a lot of useful stuff and make it easier to make you better faster. What scares you?"
    "I'm scared of it hurting again. I'm scared of fainting again. I'm scared of vomitting again."
    All genuine fears.
    So I said, "What if it doesn't hurt this time? What if we can guarantee it?"
    So we went to buy emla cream and I put it on him. He complained that the tape hurt, that it dug in. I told him that it was still going to be OK, it wouldn't be for long and the end result would be worth it (privately, I hope so). We waited as long as we could, difficult child 3 whingeing about the tape being uncomfortable and he kept prodding at it to see when he would stop feeling the prod. Finally we'd waited long enough (hopefully) and we went in to the pathologist's. I quickly explained (again, without difficult child 3 hearing) and they were wonderful. They let him lie down "because that way the blood collects more easily."
    It went off without a hitch and difficult child 3 was sold on emla.

    Next time the doctor wanted bloods, he reached for the emla. But we didn't have time for it to work properly, so he felt the pinprick of the needle. However, he hadn't had time to panic so there was no problem with the blood flow and after that brief pinprick there was no problem.

    Next time bloods were ordered difficult child 3 was debating - will we use emla or not? He kept insisting he wanted emla (which would have meant I had to buy another packet) and he also had to have at least a day to prepare himself for the tests (he's increasingly needing more time to prepare himself for change). And of course all this time he's used every opportunity to watch me have blood drawn as well as an injections I've needed (for a while I was needing gentamycin shots in the rear end - yes, I let him watch those too). He said "I need to harden my heart" to seeing needles.

    In the end, difficult child 3 decided to have the blood draw without emla. Same pathology firm but by this time they let him sit up for it and they really are good - it was over in asplit second and although there was an initial 'ouch' he smiled because there were no problems and we were out of there in minutes. It's taken us a couple of years of this, but he is now mostly over his needle phobia. He knows he has control, he knows there are options to make it easier if he needs to.

    It can be tedious, it sometimes seem we're pandering to his foolishness or his whims. The thing is - for a kid like this, if we hadn't done this then every blood test, every medical examination would be a screaming match with a terrified, panicked kid getting increasingly difficult to hold down. In my view, the end result is the important thing. If some people are critical of how we've "pandered to this spoilt brat" then I don't give a rat's. All I care about is the NOW - we have a kid who can now handle blood tests without puking, fainting or having to be held down by four people.

    The battle seems daunting, but when you get a result like the one I described - it makes it worth all that effort.

    You are doing the right thing pushing for more informaiton and support now. I suggest you talk to her about how she feels about herself and how you DON'T want to turn her into a perfect being, just into someone who is happy with herself and what she can do. You love her and want the best for her, but at the moment there seem to be obstacles in how things work for her, and you want to help make those obstacles go away. But first those obstacles have to be found, recognised and then measured. All the doctors, all the tdocs, all these people are there as tools to help HER to find how she herself can be the best she can be, AS HERSELF.
    If you wanted her hair colour changed, you'd buy a bottle of hair dye. If you wanted her eye colour changed, you'd buy her coloured contact lenses. If you wanted her nose changed, you'd get her to a plastic surgeon. But you're nnot doing any of that because you love her. But you know she is not happy and that makes you sad because you love her.
    Getting her help is a team effort. There is help out there. In the past you've had some duds by the sound of it. Feel free to agree with her (if you do) when she is critical of past efforts. This is about her and she needs to have some say in this, but I think you need to push as hard as you can because the alternative is unthinkable. Ask her how she thinks things will go, if you fail to get her assessed and supported.
    Include in this scenario, the fact that as she moves into higher grades the work is going to get more subtle, more complex and she may suddenly hit an acedmic brick wall especially in some subjecgs. No matter how bright she is, this happens to some kids because of an underlying and undiagnosed condition. But when support is in place this can be dealt with by finding another way around the problems (which is exactly where we are now with difficult child 3).

    Also let her know (if this is part of her fear) that at least some of the options you're looking at ARE NOT that she is nuts, or has a psychiatric problem. But they do need to be considered and ruled out (or in if that is appropriate, but don't tell her that yet if it's an issue for her). Pervasive Developmental Disorder (PDD) for example is more a neurological condition and not psychological. ADHD also. Even some other conditions like bipolar are often a chemical imbalance rather than primarily psychiatric in origin.

    Let her express her fears so you can help her face them, explore the absolute worst case scenarios and help her see that life will continue past them and if help is available, such problems can be overcome.

    Fear can be crippling. Fear ignored or denied even more so. Fears faced and overcome are empowering.

    Get your husband to lurk here and post here too if you can. It did wonders for me and my husband because it helps him get a glimpse inside what is worrying me about the kids and we can then tal about it more. Even tough we were already talking about it, having him see what I wasputting in writing made it easeir because what we write is more distilled, more concentrated and sometimes easier to get the point across. He is now a member of this site in his own right.

    With appointmens coming up, give her time to get used to the idea and ask her what is worrying her about them. Try to help her face her fears and where possible, find ways to reduce the need for anxiety.

    Also where all else fails - I use bribes. The professionals call it "postive reinforcement" - we follow a doctor's appointment with a stopover at difficult child 3's favourite fast food place sometimes, or perhaps the mall.

    Everything helps.

    Letus know how you get on.