TURNERS SYNDROME and Behavioral Disorders?

Discussion in 'General Parenting' started by tekepunch, Mar 9, 2009.

  1. tekepunch

    tekepunch New Member

    My daughter (11 yrs) has had behavioral problems most of her life, and they have gotten only worse. Though she has had home issues through a bad divorce, I was wondering how many other children with Turner's Syndrome have the same sort of problems. Her latest evaluation. says that she don't have NLD which is said to be related to turners, nor Bipolar or ADHD, the Dr. thinks it is ODD, Conduct Disorder, Anxiety, some Obsessive Compulsive Disorder (OCD) and she just needs some therapy and positive reinforcement. In the meantime, me and her brother are suffering through tandrums and non-stop issues of defiance, anger, strange behavior, etc. including homework until 11 p.m. and having to fight to dress her and drag her to school in the morning. I physically and mentally am exhausted and her brother has been patient, but it's not fair to him. I have virtually no help. Her father thinks it's all my fualt, she lived with him for 2 years (he thought he could do better) but he made it worse by discipliining her with extreme fear and eventually abuse and I had to take her back, he also taught her a very bad disrespect for me, making it harder to get through to her. I'm taking her to a pediatrician for a 2nd opinion, then her Pediatric Endocronoligist about the hormones. Anybody relate, anybody have a turners child?
  2. Marguerite

    Marguerite Active Member

    It sounds like a lot of damage has been done and you're going to need to change the way you handle her, to make any progress. Often the strict approach is not effective, especially for a difficult child, because we're asking them to comply at a level they just can't handle. It's like punishing a newborn baby for not telling us in words what they want.

    A book we recommend here is "The Explosive Child" by Ross Greene. It's a different way of handling a child, it almost turns previous methods on their heads. You can use the techniques on easy child kids too (difficult child = Gift From God, the child that brought you here, easy child = Perfect Child, although none really are THAT perfect!).

    I don't personally know any kids with Turners Syndrome, but I do know about it. And from what I know, I suspect that even the experts are still floundering, when it comes to what each kid is capable of and where the child can achieve (or has difficulty). So in this, you will probably have to work out a lot of it for yourself. Sorry. It really will dpeend on where she can perform, and where she just can't do it.

    As far as discipline goes - try Explsoive Child, you really have nothing to lose. And the really good thing about it - if it works for you (and I think it has a good chance) then it will work for anyone who uses the same techniques and is on the same page. Anyone NOT on the same page, is suddenly going to seem like an ogre. It works by changing the way she sees you. You are no longer the strict disciplinarian (because it didn't work, did it?) and instead, you are the support, the facilitator, the assistant. She sees you in the role of helper and she learns to go to you for help and to work WITH you.
    There are something you need to ignore - just do't react to the disrespect or shouting. But instead, show respect and don't shout, because YOU are the hero who is showing the standard of how to behave. You then have every right to quietly say, when she is shouting at you - "I'm not shouting at you; please don't shout at me."

    Much of how it works is in the preliminary set-up. You try to put things in place when she's calm. Of course when a kid is raging, they often forget plans and strategies, but it's a matter of keeping your cool and helping her regain her composure before you try to get anything more out of her. Teaching her to communicate frustration in more effective, acceptable ways is perhaps a big target, but it makes a very big difference when you can get to that stage.

    The aim of all of this - to get her to learn to behave more appropriately. And it seems from what you say, that a lot of her bad behaviour is likely to be due to frustration, anger (at past mismanagement, especially if her father was overly strict) and possibly difficulty in maintaining self-control at the moment.

    There are going to be some areas where she just can't perform at the same level as others of her age. This is frustrating to her as well as you, and from what I understand of Turner's (I could be wrong, because my information may be faulty) there are going to be some areas where it will always be alien territory. What you may need to begin to focus on, especially as things get more challenging academically, is finding a career path for her and putting it in place now. Again, this is very much dependent on how she is going and what she is capable of. Another thing about genetic defects - there can be a very wide variation in how the condition is presented, simply because there can be anything form a partial loss/added chromosome, to full expression. A Downs girl we know is considerably handicapped, at 15 she still can't read. And yet another Downs boy we know, same age, has been doing really well in school. There really is a wide range in capability, every kid is different.

    On the subject of her wanting to stay up late to do homework - if it IS homework she is doing, I would actually let her do it. But I would talk to her teacher about the time it is taking her. easy child was about 11 when she began burning the midnight oil doing homework and assignments, because she hadn't organised her time properly. I remember getting up once at 2 am because an assignment she had been working on, was lost when the computer suddenly crashed and she hadn't done a save for a few hours. I typed, while she dictated. it was the quickest way for me to get back to bed and get sleep! But easy child did learn, as I let her stay up, that if she did her homework late at night she would be tired andcranky the next day. She learnt fairly quickly, as a rsult of natural consequences, to use a bit more careful organisation.

    Maybe your daughter's teacher could help her organise herself a bit better with homework? Help her set up a homework plan, for example, so she's not needing to be up so late at night. But this shouldn't be a battle for you, to this extent. By talking to her teacher about it, instead of you being part of your daughter's problem, you have become part of her solution. She is not as well equipped as you, to solve problems. She needs to know that you can be her problem-solver, or at least help her learn how to find her own solutions.

    You will find h her doctors can help you with medical issues, with hormone levels and other stuff (all very important for her medical care), but are not going to be very useful when it comes to the behavioural issues you're facing. And even the usual psychologists - their yardsticks are people with a full complement of chromosomes, and frankly a lot of their measures are not really going to be as relevant. What you deal with, is what you deal with.

    Be wary of labels which define her behaviour - they may not be a comfortable fit. She is her own person, she has her own qualities.

    I wish I could be more help, but what we CAN do here, is provide support and ideas for ways to handle specific behaviour problems, regardless of the underlying cause. And that's why I love that book so much - the diagnosis doesn't matter. It just dives in and works on te behaviour, in ways that are ridiculously easy to implement, compared to the alternatives.

    There are other books, also. They're all worth a read. And before you fork out money for any book, try and grab a copy form a local library. There is some discussion on Explsoive Child in the Early Childhood forum, it can give you a bit more idea.

    Welcome to the site.

  3. susiestar

    susiestar Roll With It

    I have friend with an adult daughter with Turner's. She was a NIGHTMARE for her mom and dad. They were still together until she was in high school, but Dad blamed Mom for all of it and refused to deal with the child at all.

    She was sneaky and manipulative and would do the throwing items in the pool maneuver, taking anything that anyone valued and ruining it or hiding it, all sorts of nasty things like manipulating other kids to fight or exclude someone.

    somehow they got most of it to stop. Largely this was done by other kids though. They eventually caught on to her and turned against her. It was sad, but the natural consequence of what she was doing.

    I wish I had advice. I would try a developmental pediatrician rather than a regular one though. They have special training and can be very helpful with this.
  4. shad16_12

    shad16_12 Member

    HI Tekepunch...My son has genetic disorder that involves 45 xo cell line...manifestations of those cells are similar as seen in Turners Syndrome Mosaic...He's a rare case. Im gonna get some info together for you and ill post back to you tomorrow. I just saw your post and its late here...There arent many people here that are familiar with Tourette's Syndrome> but they sure know about behavioural disorders...i did get a response here from a lady whose stepdau has Turners. Ill find her name for you too. sonja
    Last edited: Mar 10, 2009
  5. tekepunch,

    I don't have any experience with children your daughter's age with Turners Syndrome, but I do have a good bit of experience working with older adolescents with Turners Syndrome. It does sound to me that you are dealing with some behaviors that may not necessarily be tied to the Turners Syndrome. Is something at school causing her a lot of anxiety? Is she possibly being teased or bullied at school? The physical hallmarks of Turners Syndrome can be quite obvious , and I wonder if she isn't struggling with that.Other children can be very cruel, especially when confronted with things that they don't understand. I can say that "The Explosive Child" has worked so well for us, I wish I had discovered it years ago! I highly recommend it. Using the "basket system" recommended in the book may help you sort out some of these behaviors.

    I worked with a couple of lovely young women with Turners Syndrome in a vocational program. They had the obvious physical manifestations, but they both had the most delightful personalities. They were sunny, happy, friendly, and most talkative. The good news is that they adjusted quite well to their work settings and were very popular with their co-workers (adults are so much more accepting than children). I placed one in a job at the IRS, and one humorous situation developed there. We supplied a job coach for the young lady and on the first day on the job they both were invited to have lunch with the director of the 800+ employee center. Several days later, the director called me. She said, we love our new employee - but every day at lunch time she comes to my office to have lunch with me! She needed me to tell her how to handle her "new friend". The young lady just didn't get that subtle understanding that the chief officer wouldn't have lunch with her every day.... you can be sure that the job coach spent a lot of time later working with her on "social distinctions"... and she did, with great success.

    I hope that you can find out what is causing your daughter such difficulty, and that it is a situation that can soon be modified.
  6. kitty lover

    kitty lover Guest

    I have been a lurker for a long time and have only posted a couple of times but have gained so much from this website. I wanted to reply to you because I am a woman with Turners Syndrome. I was diagnosed at the age of 14. I have to say that I never had any behavior problems and I was much easier to raise than my brother and sister. My biggest problem as a young girl was low self esteem because I was so small. I didn't know a lot about Tourette's Syndrome then and never met any Tourette's Syndrome women or girls until I was in my 30s. I don't believe any of them had behavior problems growing up either. I believe the problems you are having with your daughter are related to other issues. I know it must be exhausting for you and I hope you find the encouragement and help you need soon. It's been a very hard road for me with my daughter who I adopted at age 11. She is 21 now and still continues to be a very complicated young lady although I love her with all my heart. I wish you the best and please PM me if you would like to talk with me any further. I have a special place in my heart for Tourette's Syndrome girls.
  7. Marguerite

    Marguerite Active Member

    So looking back at all these posts, I reiterate - every child is different. It does make me wonder if this child has something else going on besides the Turner's.

    But really - what we're trying to do here, is help you get a different and more effective way of managing your daughter's behaviour. Whatever the underlying condition (including none) which may be behind the behaviour, this is where you need help.

    So again - read the book. See what you think about it, I do feel it has a good chance of helping you.

    Also, there are likely to be a lot of conflicting emotions in your daughter, depending on what she is having to deal with at school, with friends, with her father (from what you've told us, especially) - at the moment she sounds like a confused, angry young girl.

    Kitty lover, I'm so glad you came forward to offer support and contact, I think that will be so valuable here. It must have been so difficult for you, to have been diagnosed so late. A lot to deal with, when everyone else around you was going through so much change.

  8. shad16_12

    shad16_12 Member

    ["Cliinical experience and psychological research have identified adolescence as a particular critical period for girls with Tourette's Syndrome.

    Although Turner's Syndrome does not seem to be associated with an increased risk of psychiatric disturbance, some problems in social and emotional adjustmenthave been noted.

    Adjustment problems in the areas if immaturity, difficulties in the abilities to concentrate, and increased activity level have been documented in multiple samples of younger girls with Tourette's Syndrome. For adolescent girls with Tourette's Syndrome, immaturity, poor self-esteem, and anxiety seem to be central issues. Girls with Turner's Syndrome have been found to have more problems in school and with peer relationships than do girls with short stature who do not have Tourette's Syndrome. These appear to intensify during the adolescent years.

    There are three major areas of risk: immaturity, isolation from peers, and poor self-esteem. Not all girls with Turner's Syndrome will experience these problems. Adolescent cognitive changes may also be delayed in girls with Tourette's Syndrome. Thus individuals, especially those with learning disabilities, may be initially overwhelmed by the increased academic demands of middle and high school.

    Parents, teachers and friends may also find it difficult to see these girls moving into young womanhood and continue to treat them ina moer childlike fashion. These same factors may contribute to withdrawl, or in some, cases, exclusion from peers. Some girls with Tourette's Syndrome tend to retain immature interests, such as doll play, as theri peers are becoming increasingly focussed on boys, clothes, and social cliques.

    Although the problems cannot be totally eliminated, they can be minimized and steps can be taken to build skills necessary to foster appropriate adolescent psychological growth and developement. It is critical that parents take an active role in helping their daughters navigate this difficult period even if much of what they do is "behind the scenes". To facilitate maturity, age-appropriate expectations are critical, as well as hormone therapy.

    At school, it may be necessary to get help from teachers and administrators to address teasing. It is important to encourage the girl with Tourette's Syndrome to handle routine comments about her size and to help her develope a "thick skin" against minor teasing.

    Parents may have to take an unusually active role in their daughters social life. This may mean being willing to do more than their fair share of driving, having kids over to the house more often, and structuring activities to allow a daughter to spend positive time with peers. One important way to to help structure social activities is to make sure she is persuing and developing her own areas of talent, be they gymnastics, music, dance etc. Becoming skilled in such areas is a terrific boost to self-esteem, while also providing a natural social forum.

    Another way to help girls with Tourette's Syndrome to develope good social skills is to provide good education reagarding Turner's Syndrome. This education should allow the girl to understand Tourette's Syndrome without allowing Turner's Syndrome to take on too much importance in their lives.-they are first and foremost a multifaceted person and having Tourette's Syndrome is just one aspect of who they are. Getting a chance to meet other girls with Tourette's Syndrome can be very helpful."
    **TURNER SYNDROME--"ACROSS THE LIFESPAN" Dr Joanne Rovet...Published by Klein Graphics.

    ***It is my understanding that Tourette's Syndrome is associated with ADHD/ANXIETY/NonVerbal Learning Disorder (NVLD)
    My son fits this profile he has been diagnosis'd with all three.*** I have talked to other parents with girls with Tourette's Syndrome and they have not been diagnosed with any of these but may have issues related to the issues Dr Rovet talks about. Im sure those issues can cause hyperactivity and anxiety. I think the degree to which the psycho emotional problems develope to the point of being diagnosed are dependant in part on the enivironment and circumstances of the childs life. The learning profile is beyond our control but if there are other events in the childs life (seperation/divorce, financial strain, relocation, parents emotional state etc) that exascerbate possible other diagnosis...then they may develope ADHD and or anxiety disorders.

    I agree that regardless of the underlying diagnosis of Turners Sydrome, the important thing is to deal with the symptoms that you are seeing from a psychiatric perspective. Some of it may be related to feedback she's getting from others...some may be her own view of herself. The Tourette's Syndrome diagnosis does give you a place to start because there are a unique set of challenges that can come with a Tourette's Syndrome dignosis so it gives you a place to start investigating.

    Turner's SYndrome Society of the United States http://www.turnersyndrome.org/
    They may be able to help hook you up with another family in your area. Also your endocrinologist or genetics Dept at your local children's hospital may have a list of families who are wanting to connect.
    Last edited: Mar 11, 2009
  9. Marguerite

    Marguerite Active Member

    Wow! What wonderfful resources we have here, when we all team up and pool what we have and what we know.

    Here's hoping we have provided enough useful informqation to go on with for now, to begin to make a difference.

  10. HannahMarie

    HannahMarie Guest

    Hi tekepunch,
    i know you made this post awhile ago but i came across it and had to reply.
    Im 18yrs old and have a very mild form of Tourette's Syndrome, im what they call a "mosaic", they only impact of the Tourette's Syndrome you can see with me is really my height (4'11), but when i was doing some reading about how Tourette's Syndrome can affect behaviour, some of it was describing me.
    Tourette's Syndrome has been known to cause mood swings, make you argumetative and very stubborn. Weither its my Tourette's Syndrome or just my personality i dont know, but i was more than a little nasty to my mom so many times, im surprised she put up with me. I wont tell you im all grown up and over it now at 18, i still lock heads with my mom, but what i can say is that, ive got better, i think its a natural part of growing up to fight with your parents, but eventually Tourette's Syndrome or no Tourette's Syndrome you get over the worst of it. From the teenage point of view, the worst thing my mom ever did was try to shout back when i got angry, the best thing she ever did was walk away from me for a while and let me get over it myself.
    I know it must be hard seeing your daughter have a tough time, but it will get easier and for what its worth i know for a fact that after shes had a mood swing she feels auwful for whats shes done, i know it always do. One day she'll realise and say sorry for it all, its almost deffinately not you shes angry at, 98% of the time i was angry at the fact i was angry and didnt know why and the closest peron to take it out on was mum.
    Hope that helped sort of,
    best wishes
    Hannah x