New here... questions

Discussion in 'General Parenting' started by paisleysea, Oct 23, 2010.

  1. paisleysea

    paisleysea Guest

    Hi there. I'm Mindy and I have 3 kiddos. Despite the fact that my middle son has a very serious and rare genetic disability, it's my oldest who has been giving me the biggest challenges lately. J is 10 and has always been highly sensitive and inflexible but lately he seems to be flying off the handle all.the.time.

    He's seen therapists in the past but it's only this most recent therapist who seems to "get" him. (Interestingly she hasn't even met him yet). She has said he fits pretty well with the diagnosis of ODD with a touch of ADHD. Not a big surprise to us. And, really, we've been approaching discipline with him the way many recommend disciplining an ODD child just because it's what we have found that works.

    So obviously it's exhausting parenting him but at least it somewhat seems to be going well. The problems we're having now are at school and with his little sister who's 4.

    J is very intelligent and has tested in the gifted program at school but I suspect he's been coasting for the most part because now that he's in 5th and the work is getting more challenging (meaning he can't get by on smarts alone) his work is suffering and his confidence is diminishing. His friends have always been great in sports while J is not. But at least he was always the smart one. Now that he's struggling in school he's feeling pretty worthless. To make matters worse, his teacher is pretty old school in her approach to work and discipline. This is not sitting well with J. So my question is should we inform his teacher of his new diagnosis? My fear is that this will stigmatize J in her eyes (this is based on her reaction to learning about J's little brother with the disability).

    Next issue is with J's interactions with his 4 yr old sister. He used to adore her and she still adores him but their interactions lately have been so explosive and hostile. He can turn on her in an instant and it scares the heck out of her. I've learned how to control my own reactions with J but when it's between J and his sister I feel powerless. And she's learning some of his bad habits (yelling at us, expressing negative opinions to everything). Her personality "default" is loving, easy going and delightful. So seeing her adopt her brother's attitudes and expressions is disturbing. The therapist so far is helping us deal with J but has offered no tips yet on sibling interaction and it's to the point where I just want to keep them separated to avoid the inevitable problems.

    And I know that difficult child refers to your difficult child, but what exactly does it stand for?
  2. DaisyFace

    DaisyFace Love me...Love me not

    Hi Mindy!

    Welcome to our group!

    difficult child means "Gift from G-d"....for only a greater power could know which families were equipped to handle such challenging children.

    As far as your son's "diagnosis" is concerned...many of us here feel that ODD is more of a description than a diagnosis. And to tell his teachers that he is oppositional and defiant is not likely to garner a lot of pity, empathy, or understanding.

    I think you need to get a more complete analysis - to find out why your son is oppositional and defiant. What kinds of specialists has he seen? What kind of therapist is he seeing now/who diagnosed him "ODD" ?
  3. paisleysea

    paisleysea Guest

    Thanks for your reply! I suspect that J's ODD stems in part from his difficult temperament (since birth). He's also highly sensitive, early verbal skills without the ability to really process everything he's tuning in to and understanding on a verbal level. At the age of 3 when we could have been helping him learn coping we skills we were busy trying to keep his new baby brother alive.

    He's also very intelligent and arrives at answers quickly while having a difficult time breaking things down into parts to "explain" himself. The typical manner in schools of showing work and breaking down assignments into parts doesn't work well for him. I was like this in school, as well, but learned quickly to work backwards to please my teachers.

    I suspect from his behavior and what he shares with me that school has become a highly frustrating environment. He doesn't like being told what to do and even gets teased by his peers for enjoying reading so much. In a society where sports and athletic ability are valued so highly it can be difficult for the more brainy kids to feel valued, Know what I mean??

    The therapist we are working with right now is a pediatric psychologist who has years of experience working with children like J. How would I obtain a more complete analysis?
  4. Marguerite

    Marguerite Active Member

    Welcome, Paisleysea!

    I am glad you have found discipline methods which seem to be working. We here have often found a lot of benefit from a book called "The Explosive Child" by Ross Greene. I call it "change of mindset" by which I mean, often when you think of your child s ODD, you tend to also feel a bit resentful and angry towards this child who seems to delight in choosing to be difficult. But the mindset changer means if you can turn this around (flip the switch in your own head) and see this child as simply being incapable, due to combined frustrations, hidden disabilities (despite high ability in other areas) and a short fuse all combining to make social skills and other normal development, not working well - it makes it easier to not resent your child, but then to step forward and feel more compassionate in support. This can almost magically bring improvement in some kids. It is far less likely to work with those very small few who really are choosing to be a problem, because for whatever warped purpose, they feel superior when they have people chasing after them; it becomes an unhealthy mind game and power game. It can be confusing, because power is also very much an issue for kids who struggle due to life suddenly seeming too confusing. For those kids, giving them some power can actually bring about good improvement.

    I think you need to consider Pervasive Developmental Disorder (PDD) in some form. This is not necessarily the bad news some people might see; there can be a lot of positive benefit to high-functioning Pervasive Developmental Disorder (PDD). But the journey to work it out can be very frustrating. Here, we can help short-cut it. Even if it's not Pervasive Developmental Disorder (PDD), there is enough similarity for it to be a valuable working hypothesis for you, I feel.

    Go to and look at their online Pervasive Developmental Disorder (PDD) questionnaire. It's only a guide, nothing more. But you can print out the results (whatever they show) and take it to a neuropsychologist or even just the GP, to indicate the areas of concern.

    What worried me about your description - what rings the bells of my memory, in other words - is your description of a seemingly very bright child who has been coasting academically, now beginning to struggle because he has to actually THINK and not simply use key words to find the answers. As the work becomes more socially complex; as the kids are required to "read between the lines", you find a sudden difficulty in a child who socially lags behind others. This social lag can seem mild in play situations, but in class it can show up especially in gifted programs where the truly socially advanced students can readily do the humanities subjects. I'm betting he is doing better in Maths than in English? And in English, is good at grammar but suddenly doing badly in more complex comprehension exercises?

    An example - a Pervasive Developmental Disorder (PDD) kid has a comprehension exercise to do. A question asks, "Where did John lead the donkey?" and the Pervasive Developmental Disorder (PDD) student skims the text looking for keywords "John" and "donkey" to find the answer quickly. But as the children get older the questions become more challenging. "In this poem, 'Dulci et Decorum Est', is Wilfred Owen presenting a consensist or a conflict point of view? State your reasons for your answer." (That, by the way, is the level at which difficult child 3 is expected to work - it's a struggle, but with practice, he can now answer such a question at age 16 - if the question is defined more clearly, he can now easily answer it. As it stands as I wrote it, he would need to mentally revisit the definitions of consensus and conflict before he could formulate an answer, and if like his Aspie brother he had trouble multitasking mentally, he would need to practice writing down his thought processes in a mind map).

    It is not unusual for a Pervasive Developmental Disorder (PDD) kid to be bright, even to the level of being a gifted genius. But USING it, especially as the work gets more complex - that is the problem. Coaching won't help, if it doesn't address the underlying brain maturity delay. That brain will get there, but it could take years longer than you plan for. Meanwehile he will feel academically frustrated if he fails to find a subject at which he can continue to excel.

    Your son undoubtedly knows he's bright. Probably also doesn't suffer fools gladly. And now he is struggling, he feels he himself is the fool he despises.

    What he needs - he has to find what he is still good at, independent of that need for social brain maturity. He needs to feel better about himself and also to know it is not his fault and, especially with some help and hard work, he can improve. It also helped my kids to be told that while Pervasive Developmental Disorder (PDD) is technically a disability, it also brings surprising and valuable gifts.
    To learn more, read up on the work of Tony Attwood, then follow where those connections lead.

    Also, stick around here and let us know how you get on. There is a lot of help and support here, from so many other parents who have been where you are. Plus your own experiences will be able to in turn help others.

  5. paisleysea

    paisleysea Guest

    Thanks Marg! I have been over to childbrain and J scored very low in Pervasive Developmental Disorder (PDD). I filled out the questionnaire simply because I know that ODD can mask other problems but I've never suspected him of having Pervasive Developmental Disorder (PDD). He can tune into people and emotions and then just as easily (at least appear to) tune them out. He's always had a wide range of friends and is usually well-liked. He scores relatively high in math but his real strength lies in reading and verbal ability/comprehension. He's very creative and definitely can think outside the box. I do think that ADHD fits somewhat and wonder if that coupled with his personality is what accounts for most of the problem.

    We knew long ago how important it is for him to find something that he can do that makes him feel good and gives him confidence. We've been searching for a long time. So far the only thing he really loves is video games. Fine in moderation but the search continues.
  6. flutterby

    flutterby Fly away!

  7. smallworld

    smallworld Moderator

    Clinicians who diagnose ODD do kids and their parents a great disservice. I just attended an all-day workshop this week with Dr. Ross Greene, who wrote The Explosive Child (which you absolutely should read), and he called ODD a "meaningless disorder." Essentially, ODD is a set of behaviors for which there is an underlying cause. When the underlying cause is identified and treated, the oppositional behaviors subside.

    To obtain a more accurate diagnosis, I recommend locating a neuropsychologist who can do a full evaluation (typically 6 to 10 hours of testing) on your son to figure out what is going on. Neuropsychologists can be found at children's and university teaching hospitals.

    Welcome! We're glad to have you here with us.
  8. paisleysea

    paisleysea Guest

    NonVerbal Learning Disorder (NVLD) does sound more on target. Thanks!

    I have read The Explosive Child and visited Dr. Greene's website. I liked his ideas and felt it fit J but don't remember finding the recommendations helpful or easy to follow. Maybe I'll have to check it out again since it seems to be so popular here.

    We live near both Duke and UNC Chapel Hill so I'm sure I can find a great neuropsychologist. relatively easily. Thanks for the help!
  9. TerryJ2

    TerryJ2 Well-Known Member

    That's great that you live near Duck and UNC Chapel Hill. Fingers crossed for a great expert!
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    NonVerbal Learning Disorder (NVLD) is very close to Asperger's Syndrome. Some think it is the same thing. So it could probably benefit from Autism Spectrum Disorders (ASD) interventions.
    Does your son know how to hold give and take conversations? Does he listen and talk about his feelings as well as just nod or monologue?
  11. paisleysea

    paisleysea Guest

    He can definitely converse about feelings in a typical way. He has a wonderfully irreverent sense of humor. There is really absolutely nothing socially awkward about him. Nobody, not even doctors or therapists, have ever noted anything "off" about him. I've worked with kids with Asperger's and have a few friends with kids on the spectrum. I've always been able to detect that ever so slight difference in their affect. It's just not something I see in J. He does have some difficulties with gross and fine motor tasks and I've often wondered how that might fit in.
  12. Marguerite

    Marguerite Active Member

    There are some forms of severe ADHD (or, if you take out the hyperactivity, ADD) which can have motor impairment or other issues involved. Occupational Therapy assessment can give you a clearer picture - sometimes the answer is surprising. For example, we had to have easy child 2/difficult child 2 assessed by an Occupational Therapist (OT) in order to get accommodations for her handwriting problems in exams. The Occupational Therapist (OT) happened to find a few other problems we had not known about - turned out she also has dyspraxia and kinesthesia. The Occupational Therapist (OT) said, "Well, that just means you have some difficulty in knowing where your body is, in relation to everything. You're likely to seem a bit clumsier and have poor balance," at which my girl laughed. She's been working professionally as a stiltwalker since she was 8 years old! But it is true, apart from her brilliant sense of balance, she is unco. And when she was learning ballet, the only way she could learn a choreography routine, was for the teacher to manually position her arms and legs. She could not learn body movement by just watching.

    So an Occupational Therapist (OT) assessment can sometimes give you surprising but valid information. Similarly, with a speech therapist.

    Since you say he scores well in reading and verbal comprehension, help him focus on this as his strength. But be careful - as he gets older, this does become more subtle and therefore more challenging. You might need to work with him to maintain his high level of ability here.

    easy child 2/difficult child 2 never seemed to have Asperger's, but we realised when she was 10 that she had problems with laying down memory. She had been doing well in school up to this point when she suddenly seemed to slam into a learning brick wall. We couldn't understand it and neither could she. A school-based psychometric assessment showed an apparent IQ drop of 20 points, which also didn't seem to make sense. Further investigation led to a diagnosis of ADD (inattentive type) as well as "she has some traits of Asperger's". This was despite her continuing ability to a high level in reading, grammar, spelling and comprehension. In fact, she never had problems with comprehension at any level and continued to choose English at the top level right through her schooling. But that memory problem - it drove us crazy. It was not immediately apparent, except academically. Especially in Maths, which had been one of her best subjects. She could sit there in a Maths lesson, follow it all, do t he problems, seem to really 'get it'. Then a few days later, she couldn't remember how to do it. She could remember being taugt it, but needed a refresher. If a few more days had passed, she wouldn't even remember having been taught it.

    We were told this was due to the ADD preventing the memories being laid down as deeply as they should have been; the inattention t the level of the brain meant that the mental recording was only superficial and too easily erased. She needed help in ensuring her memories were more thoroughly engraved in her brain.

    medications were the trick for her - a surprisingly low dose is all that was needed. She still takes medications (she's 24) but only on days when she needs to focus. So in Grade 6 when she was diagnosed, she had been almost failing in Maths (despite it being one of her best subjects in previous years). We had tried intensive coaching, but to no avail. Unless THAT topic kept getting revisited every few days, she would forget it so thoroughly she had to be re-taught. But after starting on medications, in Grade 7 she topped her class in Maths, six months later.

    WHat I did with all my kids to ensure the best comprehension capability - I used to read every book they did. So with the girls, I read all the Babysitters Club books as well as Babysitters Little Sister. Christopher Pike and all those. Then Ann Rice books - I stayed up with it all. Then we would discuss the books. Because we started so young, it set up the pattern for them, to read between the lines. It is more difficult with boys because the range of books available do not encourage this level of introspection. So when that expectation hits at school, they can suddenly flounder, where before they were doing well.

    WHat has been a support for difficult child 3 (who refuses to read narrative books despite a high capability) has been a TV education show on poetry. The program is made in the UK but screened in Australia as part of the TV for schools programming. As a result of watching this program (including more repeats of it than 'I Love Lucy'!) difficult child 3 now has a really good grasp of poetry analysis, and also professes to really love poetry. Unusual for someone with autism. His English teacher recently gave him a one-on-one lesson in poetry and was blown away by his ability, when in other topics he obviously struggles.

    I read the books that the kids do, and we discuss them in terms of the hidden messages. "When the main character did this, how do you think the other characters felt? How would you have felt? How could she have done things differently? Can you see a general theme in this book, that ties all the sub-plots together?"

    These talks were useful on so many levels - they gave me a window into how my kids were thinking, how their compassion and empathy was developing, and even if they were having serious social problems (not necessarily because of any lacks in them - easy child had problems with a classmate who would control all the social interactions in the class).

    We now believe easy child 2/difficult child 2 has mild Asperger's. But her first year in high school *grade 7 for us) was marked not only by a return to Maths ability, but by her winning a major writing competition with a very imaginative and complex fantastic story. She had written it for school, I read it and sent it off to the competition for her. It matches with the sort of pictures she used to draw, from very young (pre-school) - very detailed, intricate,, complex. She just has a mind that works that way.

    Mindy, it is possible that all you are concerned about could be explained by inattentive-type ADHD. There could also be some kinesthesia issues. But to be sure, it needs thorough assessment. The motor skills issues need Occupational Therapist (OT) assessment. The possible NonVerbal Learning Disorder (NVLD) - Speech Pathology. But go carefully with SpeechPathology - we have a very good friend who is a Speech Pathologist, who recently assessed difficult child 3. She went beyond the basic tests which showed his abilities all now within the normal range or above. Because difficult child 3 had language delay IN THE PAST but has now caught up and progressed to a university-level vocabulary, he tests now as normal. But she dug deeper and fond a wide gap between difficult child 3's vocabulary, and his ability to access that ability in normal time-frame. This is a facet of the earlier language delay and is actually responsible for his speech dysfluency. As a result, difficult child 3 will always be frustrated by his difficulty with word-finding. Interestingly, easy child 2/difficult child 2 has word finding difficulties too, although she never had language delay.

    These gaps in function can be extremely frustrating, especially as a child is beginning to get a handle on what they are good at and what their classmates may be better at. When I talk about brain maturity, I am not equating that with intelligence or even capability. But sometimes some parts of a child's brain can take a little longer to mature, and this can show up in a sudden gap in ability than seems to appear almost overnight. The child feels shocked - he could do that before! Or he thinks, why has the work suddenly become impossibly difficult, just in this little area? I remember when I went to high school (age 11, here), I went to a high school out of the local area where I had been going to school. The curriculum material had been subtly different so when a certain topic was taught, the other students were familiar with it and I was floundering. In my best subject, too! It was a huge blow to my confidence and it took me years to recover, even though that topic only lasted a couple of weeks.

    Whatever your son's problems, I would suggest working primarily on symptoms, for a start. Get the experts to define the range of his capabilities, in order to better support him and teach him that the beat way to achieve is to identify your weak areas, then target them directly. Too often the education system teaches our kids to avoid the hard stuff. The bright kids especially, need encouragement and support to learn to go right to the problem areas and work on them. Being bright, it's too easy to slide by and close your eyes to one small, tricky, topic area. But this is a very bad habit to get into and will do them a disservice life long, if they don't break this habit.

    easy child came home from school one day when she was 6. "David beat me in Maths today, I need to study. That cannot happen again." As she got older she needed to keep this attitude toward her own learning. She's needed occasional encouragement and "attagirl" support to keep this. School can really knock a kid's confidence, even a bright kid's. If learning problems suddenly emerge from the mists, it just adds to the hurdles your child needs help over.

    WHatever it is - ADHD, Asperger's, or something else not yet identified - follow the symptoms and work from there, to begin with. Use what works and dump what doesn't. And don't feel guilty asking for help, for a kid who already is a high achiever. Every child deserves the right to be able to achieve to the best of his abilities. If learning problems get in the way, and this kid SHOULD be in the top 10% of the class but is only in the middle range, it is still OK to say, "He needs help with his learning problems so he can do as well as we all know he is capable of." Anything less is frustrating to him, and demoralising.

    Similarly, if the best a kid can do is the bottom 10%, he needs to know that achieving that is absolutely great.

    We need to learn to work to our own potentials, not everyone else's expectations.

    He sounds like a great kid, actually.

    Keep us posted.