Nothing is working!!!

Discussion in 'General Parenting' started by Dara, Jul 20, 2008.

  1. Dara

    Dara New Member

    I really dont know what to do anymore. nothing works. Sammy's behavior at home is horrific. The therapists advice is: He is very sensitive to subtleties. There are a gazillion incidents a day caused by a gazzilion different subtleties so how the heck are we supposed to figure out what each of those are? It took them 4 months when he first started at a year to figure out that he was only choking on food when sitting in the highchair so take away the highchair. How are we supposed to figure out every subtle move we make. My eye twitched My hair blew in the wind My husband turned left.... That is a cop out not a plan of action
    We also are doing the token system. Sammy works for rewards during the day. The problem is Sammy doesnt care. The reward has to happen the second he is interested in it and that is before he has earned tokens. Nothing holds great power over him. He doesnt care and because he is so strong willed, he would never give us the satisfaction of letting us know that he cared. A token system can only work if he cares about the reward and he doesnt. We are only keeping the therapists around now for the potty training and once that is over we are done with them. Sammy was evaluated by a speech therapist at school and in home. She was stunned at the difference in Sammy in the 2 places. At school he was coopertive and talking. HE did have issues with initiating social interaction which she will work on. At home he used fake words would not answer anything threw tantrums, rolled around on the floor. She originally wanted to do an articulation test but then said, he has a great vocabulary and articulation. She said it is a matter of him choosing to speak because he is perfectly able. That is everything with Sammy. At school, they are stunned to hear about his behavior at home at therapy the other parents wondered why he was even there. I dont know what to do for him and us anymore. I think I am calling a psychiatrist. Maybe they can help. We are so desperate for some help to come up with a working plan to help him behave at home!
  2. nvts

    nvts Active Member

    Dara, I'm so sorry that you feel that you're beating your head against the wall! This junk is soooo frustrating especially at Sammy's age.

    Can I recommend that you take a look at It will help you better define what's going on with Sammy and his issues at hand.

    Have you had the neuropsychologist done? They should be able to put you in an appropriate direction for treating Sammy's symptoms. You also need to talk to the Dept. of Developmental Disabilities. They'd be able to help you with respite care, etc.

    It truly sounds like a ton of sensory issues for Sammy (that's my totally uneducated conclusion!). Has he been evaluated for occupational therapy? If he's really chugging along with sensory problems, he could be hearing, seeing, smelling, feeling or tasting something at home and not at school that's throwing him for a curve. Occupational Therapist (OT) evaluation could be key in all of this.

    Just a few thoughts!

  3. Sara PA

    Sara PA New Member

    A token system for a three year old? Even four year olds have trouble with delayed gratification and impulse control. It's pretty common for three year olds want what they want and want it now. That's the nature of the beast....and the level of development.
  4. smallworld

    smallworld Moderator

    I agree that a token system at age 3 would cause more frustration and meltdowns than prevent them. Heck, even my 15-year-old has a hard time with a token system.
  5. TerryJ2

    TerryJ2 Well-Known Member

    Very frustrating.
    Does he roll around on the floor only when you are there, or will he do it for hrs in his own rm when no one is looking?

    My eye twitched My hair blew in the wind My husband turned left.... That is a cop out not a plan of action

    I totally understand and agree with-this. That's one of the issues I had with-The Explosive Child and some other books. But I eventually learned that it was my reaction that was just as important as my son's.
    For ex., I quickly learned that if my difficult child choked on food, he'd better darn well be turning blue or I was going to ignore it. That attitude made a huge diff because he stopped doing it almost immediately.
    I pared down our activities, since he is horrid at transitions, and focused on what needed to be done (school, grocery shoppiing, etc.) and did desentization, no matter how much he battled me, and eventually he learned to cope.

    Doesn't your psychiatric give you any practical ideas?

    What's going on with-the potty training? I'm assuming you mean during the daytime so he can go to preschool.

    I know what you mean about tokens and not caring. It worked for a short time for our difficult child merely because it was a novelty and it gave him attention. Since he was sooooo into immediate gratification, he soon gave up on it.

    The fact that he CAN do it at school (daycare?) implies to me that there may be a psychological component, a control issue at home. Have you talked to the psychiatric about that?

  6. Dara

    Dara New Member

    That really is our big issue. He does have these abilities and he does use them at school or in therapy or other places but at home or even out with us, he is a completely different child. A lot of people I know who live other places have mentioned the possiblitly of him being Bipolar and I said we would not be surprised in the least. He was 4 in june, he does in fact have impulse control issues, he does have issues with having a thought in his brain not necessarily sharing that thought with us and acting on whatever emotion is with that thought. What I mean is he will be playing or sitting and eating or whatever the activity and suddenly get furious and throw whatever it is that he is holding. He gets instantly irrate and nobody knows why. It is like he thought about something that really made him mad and he acted on it instantly. With Sammy, even if you know something is going to make him mad, there is no build up. It is instant rage and you cant reason with that. You cant calm him or get him out of it. Many times, when it is over, he has no idea what it is that he has done it seems. I dont know for sure because we can never get any accurate information from him. Like talking to a brick wall might actually be easier than trying to talk to Sammy. When he is in a good mood like today, he used good words and we could have conversations he pretended to be the teacher and I was the class, he had a playdate . He only had 4 or 5 major incidents today. Today was a fabulous day. Yesterday, was a day full of rages from the time he woke up until he went to bed. There was little to no communication. Could not ask him a simple question like "do you want juice" HE would not respond to anything, he would kick me hit me do whatever he could to hurt me. It was a day of what the heck do we do to stop this!
    Since we came back to regular school, we have not had one bad report. They talk about how much fun he is and how talkitive heis. He sings his heart out to all of the songs and his a little comedian. I dont get it! How does one young child have 2 such drastically different personalities!
    Oh, as for the potty training, he doesnt go on the toilet. The therapists are going to do a potty party but not in our house and without us involved in the begining so he actually aquires the skill.
    We did try neuropsychologist and he didnt help at all. he didnt even examine Sammy. It was a crazy appointment.
    I need things to get better. First they said once he speaks his behavior will get better, well he is speaking and no change. There has never been any change in his behavior. We need someone with a plan who understands that Sammy is quite bright and the normal tricks dont work on him. We need someone who thinks outside the box and recognizes Sammy for how he is and understands what might help him instead of saying I dont know or hmm and leaving us hanging with no clue of what to do!
  7. SRL

    SRL Active Member

    Dara, wan't he scheduled for an appointment at Mayo Clinic this summer?
  8. Christy

    Christy New Member

    My son came to live with us when he was almost four years old. His behaviors were not normal. I would describe them to others and many would discount them because he was so young and had been through a lot. I taught preschool as well, and I could see that what my son was exhibiting wasn't typical behaviors. I understand your frustration. That said, your son is very young and at this point all you may be able to do is seek infrormation and structure his environment to be as sucessful as possible. What ever you can do to make things less stressful and lead to a better outcome. At this age and given the developmental delays, it is unlikely that you will be able to motivate your son with tokens. Any rewards need to be immediate. Why do you think he does better in the school environment? Would he benefit form more structure at home? Who gave the original diagnosis of Pervasive Developmental Disorder (PDD)? Have a neuropsychologist evaluation if you are able, gather informtion from the therapist and teachers. Don't look for a fix to a problem, look for ways to work around it instead.

    Good Luck!
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Dara...from what you have posted before it seems like what is frustrating you the most is the fact that Sammy is seemingly being deliberate about when and where he will perform behaviors...both good and bad. He will talk and behave appropriately for a semi-normal 4 year old boy in his therapy group or preschool setting but will revert to tantrums and nonsense babbling at home or with you. This seems like willful and defiant behavior on his part.

    I dont know if it is or not but I can sure see how it would seem that way. I know that with my bipolar I am able to hold it together for a short time away from home and then I come home and blow. Maybe that is what is happening to him.

    As far as what you are seeing where he seems to just go off on a rage where it seems like something something triggers him inside his brain...well that could be that he is thinking of something and almost having a conversation in his brain...and he gets mad. I do this too. Not so much the getting mad part but I will be having these thoughts...almost talking to myself inside my head and its like I think Im talking outloud and will start talking to others in mid story and others are
  10. susiestar

    susiestar Roll With It


    any chance the rages are actually caused by seizures? If so, he would not be able to give you any info.

    I do see how frustrating this must be. I agree that a token system doesn't make sense for a child his age. I refused when they wanted us to do one for my son when he was 8. I think they set up an unreasonable expectation in a child that he will get a tangible reward - some things you do because you do them. Off my soapbox now - I just HATE token systems!

    I hope you can get some help.

    How is your husband doing?

  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Has Sammy seen a neuropsychologist? They are probably the best ones, even while young, as figuring out what is going on.
    I'm just a mom, but to me he sounds more Autism Spectrum Disorders (ASD) than bipolar. I would have him evaluated full-scale. Kids can behave differently in different situations. If Sammy is in a Special Education Preschool, they are very structured, calm, and orderly, which may account for his doing better there.
    I'm thrown a bit by "he talks in school, but not at home." If he has normal conversations at home, but not at school, that's very "different." WHatever you decide, I wish you luck.
  12. Marguerite

    Marguerite Active Member

    Sorry you're finding things so difficult, Dara. With Sammy still so young, it makes it even harder.

    The token system, and any other system you're trying - if it's working, then that is fabulous. But if it's not working, for whatever reason, then there's no point trying it. To try and fail is far worse than not trying, when it comes to discipline and training. If you're trying something and it's being ignored or having no effect, then it is teaching him that nothing works; that he is going to always be frustrated by the people in his life.

    At 3 or 4 years of age, this will keep happening over and over. It DOES get better but for now that's probably small comfort. It's NOW you want to be better and I don't blame you.

    I think seeing a psychiatrist is a good idea, but a neuropsychologist is still likely to be vital.

    I'm still thinking autism needs to be given serious consideration, and from what you say elective mutism should be looked at too.

    what is the difference (from Sammy's point of view) between home and school? Often with things like elective mutism, it's at home where they talk and school where they don't. difficult child 3 would use the toilet perfectly well at home but would refuse away from home; if pushed, he would have a full-blown panic attack.

    Whose idea was it to test Sammy at home as well as at school? That was a stroke of genius. Whoever it was, keep that person on your phone's speed dial. That sort of intuition is what you will need.

    You've been told that something subtle in Sammy's environment at home or in how you do things, is causing the problems. It IS frustrating to not be able to instantly identify the problem, but that IS how it is for many people with their kids, PCs or difficult children. There is no blame or shame on you for not being able to instantly identify the problem and to fix it - you're not superhuman, even if sometimes you feel like you have to try to be. Don't beat yourself up. And don't let anyone else dump the guilt on you either. Guilt only slows people down, slows down reactions and gets in the way of effectiveness.

    I remember when walking the floor with easy child as a new baby. easy child was crying, tired, hungry and I was so exhausted I couldn't think straight. I tried feeding her, but she didn't feed for more than a minute or two. I tried burping her but no result. I tried putting her to bed but she only screamed louder. I handed the baby to husband, went into another room and rang my mother to talk. My mother reminded me that I was experienced with babies thanks to my sisters using me as a babysitter so much over the years but told me that with your own baby sometimes you can be too close to see the problem. We talked, I felt better, then husband brought easy child into the room. My mother herd her and said, "She needs to be burped!"
    "I've done that!" I told her, but Mum said, "Lie her across your knees, tummy down and rub her back firmly. Then put her back up on your shoulder with a cloth in place. You should remember that trick - I've seen you use that one with your sisters' babies."

    And she was right. I should have remembered because tat was a favourite trick of mine to try to help a fractious young baby.
    And it did the trick. easy child had a bubble of wind too far down for the usual burping techniques to shift and every time she tried to feed when she didn't need it, made her feel worse.
    But I had been too tired to think of it, and my efforts were making easy child feel worse and making me feel more tired and more ineffectual. It took someone more remote and coming in fresh to hear the problem and suggest what should have been obvious to me.

    I'm wondering if Sammy has something like this happening for him - and you. You're all tired (Sammy as well as you) and the more tired and frustrated you all get, the worse it is for both of you and the further away you feel you are from any good answers.

    As for "once he is speaking his behaviour will get better" - clearly that's not the case. So it's time to re-think - his bad behaviour then is NOT connected to his not understanding. Something else is the cause, or at least part of the cause. Something in his environment at home which he is having a lot of difficulty with.

    What if you go to school and observe? Is there any way you could watch how things are at school to help you see what could be different? And please, do not think that they are simply better at handling him - I don't think the answer is that simple. This ISN'T about you going to school to learn how to handle him the right way - it's about you observing, as a parent (and also a trained professional, which is a very useful advantage) what are the stimuli (or lack of them) in his environment and in his day to help your broader overview on his needs and his behaviour.

    If your presence is going to distract too much then perhaps don't; but then again, if it means the school sees what you get at home, maybe that could be an advantage?

    You are Sammy's mother. You are the most experienced in him. You see more of the various "incarnations" of Sammy. But you don't see absolutely everything so all other points of view are of value. But you may be at this moment a bit too tired and too upset to be seeing what you need to. It's a common problem, we all go through this. Some of us almost live permanently in a state of bewilderment!

    Seriously though, if you can somehow get to see samples of the different behaviours as well as the different environments, you may get a better understanding.

    While writing this, I'm thinking of Temple Grandin and cows. At the conference I saw her at in Sydney some years ago, she talked about how farmers were puzzled as to why cows going through a race were stalling at some points, causing pile-ups and bottlenecks. The farmers walked the chase and could find nothing wrong with the cows' environment. It seemed perfectly fine to them. Nothing hanging down, no distractions, nothing to "spook" them as far as they could see.
    But when Temple Grandin walked through she could see it form the cow's point of view (a facet of how her autism manifests). She saw the things that would trigger a fear reaction in the cow - a corner as the chase changed direction, for example. A paint mark on the otherwise smooth wall. So her modified chase had smooth curves instead of corners (nothing with straight edges joined). All uniform in colour. Nothing hanging down. No sudden loud machinery noises on the other side of the chase. And so on. Sometimes it really was as simple as putting in a curve instead of a bend or joint. It could make a HUGE difference to how smoothly the cattle moved from one area to another. Smooth movement meant fewer injuries, fewer pauses, better working conditions, fewer staff needed - in general, better productivity.

    The farmers worked with those cattle all their lives. They were skilled, caring, dedicated workmen. They lived cattle, they knew cattle. And they couldn't see it until it was pointed out. Whereas Temple Grandin can THINK like a cow and so understands from the cow's point of view better than any farmer could. Once she pointed out the problems to the farmers, they could see it. And they call her back all the time, here and everywhere, because they know she is good at what she does.

    Something is happening for Sammy that is like those cattle in the chute.

    I hope you can find some answers. But in the meantime, take time out for you, to de-stress. It actually might be the fastest way to find the answers for Sammy. Coming back fresh might help you see, if the answer is at all obvious. And if it's not - then there is absolutely no way you could be criticised for not instantly having Sammy's problem solved.

  13. Dara

    Dara New Member

    I am going to try and answer all of the questions: Sammy has seen a neuropsychologist. The only one we could find in our area and he was horrible. Not only did he not spend any time with Sammy, He spoke in double talk and only used phrases that nobody understood and didnt want to see Sammy again. We got nothing out of that appointment in fact we lost some brain cells from that one!
    sammy's Neurologist is a behavior neurologist and he is someone who we actually like. He is not surprised by anything we have told him about Sammy. He says that he has Pervasive Developmental Disorder (PDD) and subclinical epilepsy. He told us as the seizures are controlled, more Pervasive Developmental Disorder (PDD) symptoms may appear. He was right. We tried Zoloft to help with the mood swings and it didnt do anything but keep him up at night, The dr then wanted to try Ritalin because it could help with the impulse control issue and mood swings and help repair the part of his brain that was damaged from the seizures. After the first dose Sammy began tounge thrusts so that ended that one. It seems that Sammy's system is not quite ready for these medications. DOnt get me wrong I know that we will be on something at some point but for whatever reason he cant handle them right now. We have our appointment with the neurologist in sept. The reason that Sammy is not in a special needs preschool is because he copies the child who is worse off who has no language or autistic behaviors. We need him around normal kids who have normal behaviors where he can learn from them. The Speech therapist did note that in school he did not know how to initiate an activity with friends or centers that were set up. He would just meander about until someone would help him get involoved. That is something that we have been talking to his ABA therapists about for almost a year that we wanted to address. It actually was my idea and the Speech therapists idea to evaluate at home as well. Basically we are going to be using a picture schedule to really do the first this and then this idea. Sammy is a very high anxiety child. I used to be that way too. I used to be perfect at school or anywhere else I was and come home and explode...not quite to the point that Sammy does. I do believe that part of it is that he is comfortable wiht us and knows we love him no matter what. I think another part is that this is a child who has been full of rage since day one for whatever reason we may never know. I think another part is that he thrives on negativity. If something negative has happened he holds on to that like an addiction and that behavior doesnt stop. Myrelationship with him is difficult. He spiralled out of control when he was 15 months old I was teaching and he was in the class next to me. He didnt understand it and it made him mad. Our relationship has never recovered. That anger from that moment has become an addiction for our relationship. That is just how he is around me and the doctors say it is very hard to break as we can see. I am calling the neurologists office today and I am calling the Psychiatrist office today. I dont think that there is a fix it plan but there has to be something that can at least help make it a little better!
  14. Marguerite

    Marguerite Active Member

    Dara, you said, "We tried Zoloft to help with the mood swings and it didnt do anything but keep him up at night" - we had the same problem with difficult child 3. He was just 5 when we tried Zoloft. It did seem to help, but we had to stop it after three days.

    Sorry about the neuropsychologist - if you're getting on great with the neurologist, that is great. Sometimes you take the help where you get it.

    I also get your problem about Sammy copying the abnormal behaviours. We had tat problem with difficult child 3 as well. We had the choice of a special autism class but realised it would be a mistake for that very reason. A year or so later when it would have worked, we couldn't get a place.

    You said, "It actually was my idea and the Speech therapists idea to evaluate at home as well."

    OK, so YOU are the genius responsible. Good thinking, 99.

    And at school he has difficulty getting started and it sounds to me like he is also having trouble making choices until someone steps in and directs him. That sounds very typical (and also like difficult child 3).

    The negativity and anger - I think you're right about calling the psychiatrist. It needs to be broken, it has become a bad habit in so many ways.

    Dara, I really do think you are doing a great deal to help Sammy already.

    I'm coming back to his difficulty getting started at school, and trouble making choices. I'm wondering if this is a problem at home too, but at home you are the one on the spot to help him and this anger you describe is getting in his way.

    You said, "I do believe that part of it is that he is comfortable wiht us and knows we love him no matter what."

    That is something a lot of us here have found. It's cold comfort to know that we make our children feel safe and loved.

    Let us know how you get on with the psychiatrist. If he turns out to be not much help, what about a clinical psychologist who deals with cognitive behaviour therapy?

  15. susiestar

    susiestar Roll With It


    Please know that I am thinking about you. You are doing a great job with a very difficult task - raising Sammy. Sadly for us moms, if we do it right then our kids "bless" us with more of their outbursts and rages because they know we love them.

    this will be a long road. Take breaks, make sure you have time to recharge yourself somehow. Remember that Sammy knows you love him and THAT is the most important thing when raising a child.


  16. Christy

    Christy New Member

    You are doing a great job seking help for your son. Hopefully you will start to see improvement and his behaviors will become more managable. Try to seek out the good things and enjoy Sammy as much as you can. It may be next to impossible at times but it is important to step back and examine your relationship. I think during the earlier years, I wanted so much to help my son that I was always pushing him to improve. I tended to measure him against the norm instead of taking him as he was and enjoying him. Can you enjoy the rages, obviously not. But thinking back, there was a lot of small stuff that I could have overlooked and both my son and I would have been a lot happier.

    Good luck,
  17. Dara

    Dara New Member

    Like yesterday and today, he was great. Yes we had some major incidents but on the whole he was great and we tell him that. We tell him how proud we are of him and how much fun we are having. We let him know how much we enjoy him and we do.
  18. TerryJ2

    TerryJ2 Well-Known Member

    Wow, lots of info here.
    I was all set to respond but everyone beat me to it--with-even better ideas.
    I agree, he's too young for the medications you tried--his system clearly can't handle them.
    I like Marg's idea about the cows--silly as it seems, it contains a great deal of logic. It just depends upon the point of view.
    I am beginning to see a pattern with-neuropsychs. A good one is worth a million bucks. A bad or disinterested one is--nope, not just one--too many to count. :(
  19. Sara PA

    Sara PA New Member

    I never quite understood why, with the subclinical epilepsy diagnosis, you trialed an antidepressant and a stimulant but not a anticonvulsant. For starts, anticonvulsants are tested on and approved for children his age. There is information about how they work, the side effects and dosage. None of that is true for antidepressants and stims. Plus, both antidepressants and stims carry warnings that they should be given cautiously to people with seizure disoders. And finally, the three of the four mood stabilizers are anticonvulsants. Why wouldn't one of them be a first choice?

    For that matter, I don't understand how partial seizure activity has been ruled out. So much of what you describe could be partial seizures. I think there's a good chance it isn't subclinical epilepsy and you are seeing seizure activity but don't recognize it as such.
  20. Sara PA

    Sara PA New Member

    And another thing -- Ritalin to repair brain damage? Everyone I knew who was having seizures -- including those who seizures were caused by brain damage -- were prescribed anticonvulsants. Many of those people took the anticonvulsants for a number of years, then were able to stop. I was told when I stopped taking them that for some people, the anticonvulsants heal the brain. I don't know if that's true, if there is an clinical evidence to support it, but it is the same thing my friend (auto accident) was told.