New here and glad I found you!

Discussion in 'General Parenting' started by indeeptrouble, May 7, 2010.

  1. :D Wow - I did a search on Trileptal and aggression and found this forum! Hurray!
    I've never known a place where people can understand what my life is like!!
    (although I am both married to and mother of a difficult child, so I'm hoping to find someone else who knows how that is - anyone on here?)

    My difficult child son is 13. diagnosis with ODD, ADHD, possible Pervasive Developmental Disorder (PDD)-not otherwise specified when he was 8? (best I remember).
    He went to the only place in Alabama that our insurance covered for counseling. Did no good until they finally referred him to a county mental health center and we discovered a county run school intervention program. They helped tremendously.

    He was in FYI (family youth intervention) for 4 years but I have just pulled him out of school to homeschool him because of all the horrible mornings trying to get him on the bus! He was diagnosis with type 1 diabetes this January, so that just escalated problems.

    Life is a bit easier now since we can sleep late. I let him choose the subject for schooling for the day and he does enough for the week in that subject, so it's one subject a day each week. That seems to work ok so far. (he just now had a mini-fit though, saying he's not supposed to do history again any of next week because he's doing it now. Guess I need to make a time line to show him what it means to do something once a week)

    He's on Prevacid (ulcers age 8), Buspar (anxiety disorder I forgot to mention above) and just started Trileptal to hopefully help with the aggression.

    Contributing GREATLY to the problem is husband, who is another difficult child. He was able to hide his problems from me while we dated - I had no idea until we had kids. Then my husband disappeared and this horrible difficult child took his place! I think as long as husband had all my attention, he was happy. Once I had to take care of babies, he did not like that. :(

    So husband and DS get "into it" a LOT. They will both argue about anything and everything (that does NOT matter!!! Who cares if DS says the sky is purple?! husband cares, that's who!) Compounding the problem is husband works for a grocery store, so hours change constantly, he can be off during our school time or two days in a row (ugh!) and DS is home all the time now. More time to argue!

    I work 4 hours a day in the afternoons and just the other day I got a call - DS was flipping out because his glucometer wasn't beeping (he checks blood sugar with it and I had turned off the beep). He thought it was broken and husband was being his normal "lovely" self and just forcing things instead of explaining what was going on. So DS is screaming, husband is yelling and I'm at work. :(

    I've already had to quit my morning job to homeschool him and I'm beginning to think I'll have to quit my afternoon job too! (we can't afford for me to). Boss won't let DS come to work with me, even though other people bring their kids all the time (child care setting). Boss likes to think she is helping me but she makes life more difficult.

    Wow this was an epic post! LOL
    So, anyone else both married to and mother to a difficult child?
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I think a lot of us were at one time, but usually that ends in divorce :tongue:.

    I would have a lot less patience toward the adult (hub) than the child and it isn't helping to set a good example for difficult child's father to act like he does. Do you think he'd be willing to go into counseling? in my opinion family counseling is necessary in order to help all the family dynamics.

    If the special school was helping your son in my opinion it's probably better than he go back there than to be home, not socialize at all, and fight with husband. Maybe the school will allow him to start later. You need time off too. If these new medications don't help your son, I also highly recommend seeing if you can find a neuropsychologist you can afford for a fresh evaluation. If he is Pervasive Developmental Disorder (PDD)-not otherwise specified at all, he needs interventions which he won't get at home and probably is not given at a psychiatric school either. Pervasive Developmental Disorder (PDD)-not otherwise specified is a neurological disorder.

    Wow, you sure have a lot on your plate. Good luck, whatever you decide to do and welcome to the board.
  3. Thanks for the welcome :D
    husband has been to counseling - it works about three months or so, then he is back to his usual self.
    FYI is supposed to offer family counseling, but they never have. They never see the behavior we get at home, so I don't think they really take us seriously.
    And today, I'm just tired of fighting the world. So I'm going to play computer games until DS wakes up. :tongue:

  4. Marguerite

    Marguerite Active Member

    Yep. But I'm lucky - husband is very housebroken. He's also a member of this site, he lurks all the time and posts occasionally too, as "Marg's Man". We think husband has Asperger's. However, he does have problems clashing with difficult child 3 at times when he is overtired and snaps back into old "disciplinarian" habits. Also he can be very inflexible, especially when he's tired. And difficult child 3 is also very inflexible and it can be a bad mix. husband though has a really good grasp of his strengths and weaknesses and is really working hard to do things the right way.

    What helped us a great deal - reading "The Explosive Child" by Ross Greene. I read it and found, even as I was reading it and before I made any changes, difficult child 3's behaviour was already improving (because I was already making changes just in my attitude, and this began to have positive benefits on difficult child 3 immediately).

    I gave the book to husband but he just couldn't get into it, it just didn't seem to 'sink in' for him. So I wrote a summary for him and also explained it to him; then as I put it into practice I explained how it worked as we went. This all actually helped me a lot, because to be able to explain it, I really had to have a good grasp of it myself.

    What we found - because I was the first one to really have a good grasp of how it worked and to use it, we became "good cop, bad cop" and difficult child 3 became even more hostile to husband, because husband was still far more in "because I said so" mode (a very bad thing with Pervasive Developmental Disorder (PDD)-ish kids).

    I strongly recommend you read the book AND do your best to recruit husband to how it works. It won't be easy, but if your husband is at least prepared to see that there is another way that could work, you are ahead of the game. If you can get him to lurk here and maybe (if he wants to) PM my husband, it might help.

    I am writing this knowing my husband will be reading this - he reads everything I post, always has. This has actually been very helpful for our communication and teamwork in raising our kids. sometimes he will come home and say, "I read your posts while I was at work today. I hadn't realised you felt that way," or "I didn't agree with what you wrote. I think you didn't put my side very well." We then would discuss it and work out any differences. It all is good to help us be on the same page. And also, what we write in a post is far more concentrated than what we might say to one another; he was getting it in a more concentrated dose, more cohesive.

    The problems aren't fixed, but we now have a different way of dealing with things. husband has also had to learn to be far more tolerant, far more patient and he IS learning this because he can see that it works. It is helping him personally in other ways.

    Other topics I want to share with you - Pervasive Developmental Disorder (PDD) is not seen as a disability in this house. It is simply a different way of brain functioning, one which brings gifts with it too. We support and nurture those gifts, we value them and we work to help the child do things his way. You sound like you're also doing this but letting your son spend all of one day on one subject - this is what we found has worked for us, first with difficult child 1 and then with difficult child 3. But we have added a few refinements to our schooling program that might help you. Feel free to 'steal' whatever of my methods you think will help, and discard the rest.

    1) School work during school hours.
    That means even if he feels sick, he still works on schoolwork and not on non-school stuff. In your case you set the school hours time yourself, in consultation with your son. But this is an important rule to stick to. When you can, replace it with an outcomes based system where he has to complete a certain amount of work to consider his school day (or school week) done. Also part of this - if he is so sick he just wants to sleep, we let difficult child 3 sleep. Because he doesn't do this often and only when he is genuinely sick. If he's well enough to sit up awake in bed, he's well enough to read a textbook. Or if he's well enough to sit up in a blanket on the couch, he's well enough to watch a documentary on DVD. Or do some educational computer stuff.

    2) difficult child 3 chooses which subject to work on next, but I guide him if I feel my availability is going to be needed more, or less, and I have to plan fort the times when I will be available. We're also moving towards a system of "Put solid effort into this subject for the next hour, and if you can then we will go do X for the next half hour." At the moment X is a driving lesson. But it could also be a promised trip to the mall, if he has got his work done efficiently.

    3) Involve your son in his own education choices. So if you feel he is getting a bit into a rut and needs to be shaken up a bit, discuss with him about planning a day excursion somewhere as part of his study. If his hands hurt to do writing tasks, let him type his answers on the computer, for example. If he has a laptop computer he can use (or something similar) then let him use it in the car and keep a journal on it. difficult child 3 has a small inexpensive word processor which he was given to use while still in mainstream, because of his problems with his hands hurting (hypermobile joints). A home-schooled student is a portable student, and we go on trips occasionally and each time difficult child 3 keeps a travel journal plus we make sure he logs everything educational we do, and the places we go. We link in every subject we can - when we went to New Zealand, we took lots of photos of geothermal power stations, of volcanic activity, of various land formations (such as glacial valleys, boiling mud, steam vents, glow-worm caves) and then got him to write about it at the end of each day. When we bathed in a hot spring we got him to copy down the list of the mineral salts in the water, for his science teacher. And for the sports teacher we took photos of the first commercial bungee jump centre in the world. difficult child 3 is a correspondence student, so he does have subject teachers - on the other end of a phone or mailing envelope.

    As far as social skills while at home, vs social skills in any mainstream school - we make a point of getting difficult child 3 out mixing with people. But because he can always come home when HE wants to, it means that if he's at a friend's house and someone is being mean to him, he can always leave. But at school he couldn't do that, and if it was teachers being mean, or not stopping other kids being mean, it was bad. We've found that difficult child 3 has learnt better social interaction now he's at home, because HE is in more control of the interaction and can suspend it if it's not working or he's not coping. He's also been in a better position to learn more appropriate lifelong social skills such as when he helps me with the grocery shopping - he has had to learn to interact appropriately with other customers, with shopkeepers, with people of all ages, sizes, shapes, walks of life. it is actually NOT natural, nor will it help him later in life, to be forced to spend most of every day in a room with the same 40 kids all his age, with only one not very interested adult in supervision. When difficult child 3 was in mainstream he was learning very bad social rules and bad habits were forming which have taken some time to repair. His short fuse got shorter, he had learned to hit back when other kids hit him, he also learned that he would always be the one to get into trouble even if he didn't start it. He was treated as stupid, as violent and as a liar. None of these are true. But he was believing this about himself and this was making our job as parents almost impossible. Plus he was vomiting at school every day, purely from the stress of being there. He wanted to be there, he loves being around other kids (yes, he is autistic but that doesn't have to mean he chooses to be apart) and he loves being in any enriched environment where learning opportunities are all around him. But the bullying was so bad it was undermining his self-confidence.

    YOu need to get a handle on the diagnosis for difficult child and for husband. Even if husband is too old to be assessed (and at his age, it wouldn't achieve much) he needs to be prepared to at least accept, even informally, that the son's diagnosis has undoubtedly had a genetic component. Also look into yourself and your side of the family - we've found Pervasive Developmental Disorder (PDD) tendencies on both sides in our family too.

    Don't try to block the Pervasive Developmental Disorder (PDD) stuff. Indulge it, as long as you can. Don't try to switch off stimming, these kids need to stimulant. But over time they will learn to choose stims which are more subtle and more acceptable socially.

    Some more study for you to help - read anything by Tony Attwood, on Asperger's and autism. he puts things in a very positive, supportive light which could make it easier for your husband to accept that this might describe him too. Especially if he realises you love him as he is, warts and all, stims etc and all. Your son also needs to know this. Keep things light, non-judgmental and respectful all round.

    The golden rule is respect. But nobody should demand respect. You have to SHOW respect, in order to be given respect in turn. And as parents, you have to be the ones to begin. Think about how we traditionally treat our kids - it's generally not how we would treat an adult living under the same roof. Compare how you speak to your child, with how you speak to your neighbour or your friend. Now try to interact with your child the same way you would with your friend. Even if your friend is rude to you but you know your friend is having a bad day - how would you handle it?

    THis is not giving in to your child, it is actually teaching your child how to behave to others. It really works with Pervasive Developmental Disorder (PDD) people.

    Next - for your husband especially - go to and run the Pervasive Developmental Disorder (PDD) questionnaire on him. If you think he can accept it, discuss the results with him, maybe ask him what he thinks. Or find a Tony Attwood article on Asperger's and see if it could describe your husband.

    The first Tony Attwood article I read was shown to me by a psychologist. The article listed the good qualities of someone with Asperger's. This expands to include Pervasive Developmental Disorder (PDD)-not otherwise specified.

    They are loyal. Extremely so. They would walk over burning coals for a friend or family member, even if the same loyalty is not returned.

    They are capable of deep, intense love as well as other emotions. We just don't always recognise those emotions because although they feel them, they don't always show it in ways we recognise.

    They are able to focus intensely, to a greater degree and for far longer, than most people. This can be a huge asset in the workplace. This is also the case for those who also have ADHD. It just has to be on the correct topic.

    Their problem solving skills are usually highly advanced.

    These abilities can be used to forge a possible career path, even if the person's obsessions seem odd and unproductive. For example, Temple Grandin's obsession is cattle and cattle loading chutes. But she has a very good career designing cattle loading chutes and related works. She is able to simply stand and look at a building, and in her head the necessary modifications are already drawing themselves. In her head she can rotate her drawings, walk through them, look at them from any angle and 'run' them to make sure they WILL work. This is not what most people call normal, but is IS very valuable.

    My difficult child 3 can't do that. He can't draw for nuts. But his grasp of electronics and computers is remarkable. We're gently pushing him in that direction for a career path.

    Welcome to the board, we can help.

  5. thanks so much Marg - I actually checked 'The Explosive Child' out of the library just yesterday ;)
    First thing on my list is his sleeping schedule. He can literally stay awake until 7 am then of course want to sleep all day.
    I'm hoping his buspar will help with this - he was on it for a while but had to go off when first diagnosis with diabetes. Now we are working it back in and just adjusting his insulin dose to compensate.
    I tried Plan B on him this morning and we will be trying the following:
    let him have ice cream right before bed and he must be asleep by 10 - he goes to bed at 8:30.
    If that doesn't work and he isn't asleep by 10, then he will go to bed at 8 and we will change what TV he watches to fall asleep.
    (currently he likes karate type movies - lots of violence and action :( but he explodes if I try to guide him to another genre of TV for bedtime.
    I don't know how it will work but I'm willing to try.
    husband is doing ok these days - he pretty much leaves the DS to me to deal with, which since they fight when the interact, works for me.
    I'm headed to that childbrain page to see about it now :D
  6. Marguerite

    Marguerite Active Member

    I'm assuming he's bright. Often these kids are brighter than they're given credit. Also as a teen, he will be trending towards a reverse of the day-night pattern. I think it's a teen thing very much.

    So I think you need to sit him down and give him a lesson in melatonin and light exposure to the brain. We're working on this with difficult child 3 now.

    First by having the talk, it is a way to get him 'on board' and involved in functioning better. If he understands why his body is doing this, he is more likely to work with you rather than against you. After all, it's not you who is the problem. It's his teen hormones plus his light exposure pattern. Here is some Wikipedia info on melatonin.

    What we are also doing, is a reward system we set up ages ago, but adapting it now to difficult child 3's bedtime. Again, we discussed it and worked out compromises. Even if you think you've compromised too much, give it a go and revisit the topic. if it isn't working, and you can easily demonstrate this to him, he may be more prepared to say, "OK, let's change this a bit more your way."

    Our reward system - for compliance (in whatever we have agreed ton, to the degree we have agreed) difficult child 3 earns 15 minutes of my time, spent playing a computer game with him. We tend to play Mario Party (because I can stand that one!). It is important to not let owed time accumulate too much or he loses the reward effect and the positive reinforcement fails. it is also good to have the reward non-material. My time spent with him on computer gaming is something he absolutely loves, because he gets to share what he loves socially.

    He used to earn 15 minutes for every day he was meltdown-free. Then we managed well indefinitely and we let that one slide. Now the reward is for being in bed on time. He is allowed to read a book, but he has to have all electronic screens off by a certain time. That time is currently being negotiated.
    The reason for tis - when a kid plays a computer game or watches TV, they are exposing their brain to light. This affects their melatonin and their day-night cycle. Even reading a book with a bedlamp on is greatly preferable, because the reflected light off the page is not the same as staring into a light source such as a game screen.

    Also important information - lack of sleep can undermine medications, especially ADHD medications. He needs to understand this, too. Although in our family, the kids never seem to be aware of their medications affecting them well or not, they have to accept by other people's responses to them, if it's working. and they always have the attitude of, "If I haven't had a lot of sleep, everyone else is mean to me."
    It has taken a lot of continued reinforcement to convince them that it's not everybody else being mean, it's THEM being grumpy and difficult to get on with.

    Our current target - difficult child 3 earns 15 minutes of my time if he's in bed by 11.30 pm. I help by reminding him of the time, but I don't nag unless he's up after 1 am. Because if he's not sleeping, I am not sleeping and I need my sleep. If difficult child 3 is up after 11.30 pm but still in bed before midnight, he earns 5 minutes.

    Now to the flip side - next morning. Even on weekends, difficult child 3 is not allowed to sleep in. I get him up at 8.30 pm at the latest. We have discussed the best time to get up and ready to begin schoolwork at 9 am. I think we need to change the time and will be discussing this with him via the therapist tomorrow. But no sleeping in means he will be more likely to go to bed at a better time that night, due to the accrued lack of sleep.

    Risperdal tends to sedate, we found we had to stop giving it to difficult child 1 in the mornings because he would just go back to bed and sleep. If risperdal is sedating your son, dose him earlier at night, talk to the doctor about increasing the night-time dose and reducing any morning dose. Or you could discuss trialling melatonin, see if it can help. it doesn't always work because the computer gaming can over-ride te pills.

    We don't restrict the amount of gaming, but we do try to restrict the times when games may be played. We need to restrict gaming late in the evening. And of course not during school hours.

    You need to involve your son in his own management. But if you need reinforcements, get therapist or psychiatrist on side to help explain to him why he needs to be working towards better health choices.

  7. Thanks Marg.
    Yes, he is very bright. School tested his IQ at 93 :laugh: I don't know if he intentionally "threw the test" or if it was just a bad day for him, but I KNOW he is smarter than that!
    He's currently off risperdal because it affects his blood sugar - he just started trileptal last week. No change that I can see but it's only 1/2 a pill right now.
    I'll print out the melatonin stuff and have him read it tomorrow for school work - he does better if I don't try to "teach him" to his face, but print out things for him to learn.
    My Dad takes melatonin, I'll see where he gets his and see about trialing DS on it.
    DS loves to read, so if we make a trip to the library to get special bedtime books, that may help matters.
    Thanks again!!!
  8. Marguerite

    Marguerite Active Member

    Kids with Pervasive Developmental Disorder (PDD) can be very difficult to accurately assess. Ditto for ADHD. If you can get your hands on the school results, have a look at the sub-scores. They have information embedded that could be useful.

    IQ tests were developed originally to grade kids across the spectrum of normality, in a standard classroom. At the time these tests were developed, "normal" was a lot narrower and would not have included kids too different. The original testing simply obtained results and from there, the results were graded and a scale determined. The scales we have now are based on those early arbitrary assignments of scores. It's pure statistics - average was scored as 100. I'm not sure of the exact details, but for every Standard Deviation away from 100, the score would have been determined at a specific value (I think 20, I'm not sure). It all is based on this.

    The troubles begin when you try to apply a test originally developed for a particular set of conditions, to someone outside those conditions. For example, a lot of the testing I had done on me as a kid, were US-based in their design and I was often instructed to adapt my answers accordingly. So a question such as "What month does Fall start?" would give you a very different answer if you live in the southern hemisphere, and if I were being graded by someone thinking in northern hemisphere terms, I'd have been marked wrong.

    Similarly, if you assess a child who has hearing problems (and only give the test verbally) or if the child's first language is not English - then you will not get an accurate picture.
    Another example - a young boy I knew, a neighbour, had a near-drowning accident at age 2. Before the accident he had been a little slow to talk since he was being raised to be bilingual, Spanish-English. Spanish was spoken in the home, English spoken at pre-school. After the accident while doctors were assessing his level of brain damage, they declared him to be non-responsive to verbal commands because he did not obey commands given in English. It turned out that first, he wasn't responding because he was a little kid who didn't want to; plus he had 'lost' his English and reverted back to Spanish only, having lost some months of memory. Once they began working with him in Spanish and from there, English - he began to demonstrate that he had not lost any intellectual function at all.

    I've found the best option when dealing with what I see as major inconsistencies in assessments, is to always trust my own instincts with my child. We also have been told that our child was "not the full quid". difficult child 1 and difficult child 3 both 'failed' their first IQ tests. Even later assessments gave results that seemed too low. And this is not just an over-indulgent mother here saying this, but the test results done by different people produced often very different results. That alone indicates problems in repeatability and accuracy. What is SUPPOSED to be the case - IQ tests are always supposed to give the same result, within about 5 or 10 points at most. But too often, especially with kids who are 'different', you get a much bigger variation. This is another indication of poor correlation between the test result, and the child's true IQ.

    So trust your instincts and always treat your child like the genius you believe him to be. There IS research to show tat children treated as if they got brilliant results, can actually go on to GET better IQ scores when tested further down the track.

    That of course is one more nail in the coffin for the idea of long-term accuracy and repeatability.

  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Just a quick note (Marg and I are often on the same page as we deal with the same problem): ADD and Autism Spectrum Disorders (ASD) can be quite different. My daughter has ADD, yet her social skills are fantastic and she may be one of the most popular kids on the planet. A child with Autism Spectrum Disorders (ASD) will ALWAYS have impaired social skills. If he doesn't, he's not Autism Spectrum Disorders (ASD).

    Good luck ;)
  10. SearchingForRainbows

    SearchingForRainbows Active Member


    Just want to welcome you to our little corner of the world... You've already been given excellent advice and I really don't have anything to add. Glad you found us. SFR
  11. SearchingForRainbows

    SearchingForRainbows Active Member


    Just want to welcome you to our little corner of the world... You've already been given excellent advice and I really don't have anything to add. Glad you found us. SFR
  12. Marguerite

    Marguerite Active Member

    MWM is right about the difference between ADD & Autism Spectrum Disorders (ASD) when it comes to socialisation. My only intention was to make it clear that even though they are often different conditions (although some doctors feel they are increasingly similar and possibly connected) - both are sufficiently different to the original groups used to set the parameters for IQ testing, that both groups are difficult to get a really accurate picture of, using such testing. You need someone who knows what they're doing and who doesn't also have a vested interest in proving your child not only isn't tat smart, but also doesn't need expensive interventions.

    For example - a kid getting IQ tested who is doing amazingly well in some subject areas such as Maths, but not doing so well when it comes to more subtle 'hidden meaning' questions can produce interesting results. When looking at the subscores you can see some areas scoring, say, 17 and other areas scoring as low as 6. Now the rules of assessment, when done properly, say that such wide discrepancies should NOT be added together and then averaged. But that is exactly what schools especially tend to do.
    A sub-score of 17 would equate with an IQ of 170, if all the other subscores were as high. A kid who is generally functioning OK with no learning problem issues will tend to have similar sub-scores in each category. But where you notice big differences - it does NOT mean the kid is "dumb" in the low score areas, it means that for whatever reason, the child does not assess well in those areas. This is a deficit in the test, not the child.

    All three of my younger kids had, at times, test results like these. But only at times. at other times a more expert tester dealt with this by digging deeper and doing more detailed testing to identify the nature of the problem, in order to give us tools to help our child overcome these problems.

    For example, one section of the test is Coding. This assesses how well the child can transfer information form one point to another. difficult child 1 scored very low when tested at school, but the school counsellor averaged out all the scores, which meant that a child who SHOULD have been identified as gifted but learning disabled ended up being categorised as "Not as bright as you thought, but actually achieving quite well considering he's actually a bit below average IQ."
    We got the subscores sent to a neuropsychologist who dug deeper and found that difficult child 1 was having problems in the Coding test because he needed reading glasses!
    Now, wearing reading glasses or not, should not make any difference to your IQ.

    So always be wary of assessments especially if your instincts tell you different things to the official reports.

  13. yea, I had a hard time not laughing at them during the meeting in which they presented his scores. I knew good and well (and so does anyone who has contact with DS for any length of time) that he is not below normal IQ. But I also knew if he didn't show a 20 point discrepancy between IQ and schoolwork, they didn't have to provide special services. He ended up getting the services anyway, based on "other health impairment" so I didn't worry about it.
    Right now it's a toss up between focusing on getting him re-analyzed by a neuropath and focusing on his diabetes care. *my brain* can only handle so much! :tongue:
  14. TerryJ2

    TerryJ2 Well-Known Member

    Indeeptrouble, nice to meet you. You've already gotten some great ideas and advice and you're already putting some plans in place. Good for you!