How about pretending all is fine?

Discussion in 'General Parenting' started by Ktllc, Dec 5, 2011.

  1. Ktllc

    Ktllc New Member

    I am SO stressed and exhausted by V and his issues. The kid is non stop and never allows anyone to just breath. All those strategies and therapies that don't work. Everyone has changed except V!!! What's the point??? He sucks my energy to the point I'm totally drained.
    I've decided to go back to full school days. Between all 3 kids, somedays I have to make 4 round trips to drop them off and pick them up. That is just TOO much. To that, you add therapies and I'm ready to explode.
    We have worked so hard in trying to understand and accomodate, but I have to come to the realization that V is the same old V he's always been...
    The school seems to think everything is just fine, then why not go for a full day and give myself a break?
    Somehow, things have to get better. I don't think I can last for years if things don't change.
    I wish there were someone out there who could help our family, but instead I'm stuck with the Occupational Therapist (OT) who finally saw that V is just being oppositional and not scared at all. Just playing her big time. And then, let's not even mention idiot behavioral therapist who treats wrong kiddo.
    And to top it all: V looks so normal and cute! Who would believe how hard it is to raise him??
    I really think sensory processing disorder (SPD) is the wrong diagnosis. Here is a list of the issues I see:
    -do things on his own terms only (he will not change his mind EVER!)
    -problem expressing thoughts, pulling out in informations stored in his brain
    -issues processing verbal information
    - gets frustrated wen forgets words/name/thoughts
    - repeats same thoughts and questions over and over (he will no stop despite how many times I listen or answer)
    - gets stuck on things/events and CANNOT get passed it.
    Do any of those signs ring a bell to you? Any advise?


    Sounds exactly like Tommy and I feel exactly how you do (see previous post). Tommy has been diagnosed with either Pervasive Developmental Disorder (PDD) or Aspergers but the diagnosis that rules our lives is the ODD....without the defiance and aggression, I think we could stand it. Same as you...CONSTANT questioning. Also always needs us to entertain him. Kids in the neighborhood don't want to play with him and yet he calls or goes to their doors numerous times a day. Obviously not picking up on social cues. I see you're in NC. Wouldn't it be funny if you lived down the block or something...lolo. I'm in Huntersville.
  3. TeDo

    TeDo Guest

    I'm at the same point you are today. difficult child 1 is in rare form again and in less than an hour has pushed me beyond my limits over something where he was wrong and argued VEHEMENTLY that he was right, twisting the details to try to make it look like he was. He just DOES NOT GET IT! I am tired of arguing with him. I am tired of always being wrong and both kids making everything my fault. I get tired of trying to reason with them. I just don't get their thinking some times and it frustrates me to no end.

    I hear ya. Sending ****HUGS**** your way.
  4. Malika

    Malika Well-Known Member

    Sorry all this is really getting to you Ktllc (and it does). My sense is that what really makes this so difficult is the fact that you have two other young children and a husband who is quite often away working - is that fair to say? Having just a difficult child to deal with is hard enough when there are no other children in the family; having to juggle it with all the rest of your priorities must be really stressful. As for change not happening yet - as you may remember, I don't think one can count on anything being fixed in the short term. However... it does sound to me as though you maybe have the wrong diagnosis (it being so difficult to diagnose accurately at this young age, of course). On a simple layperson's view, with no personal experience, what you describe sounds to me like Asperger's or autism, though you say this has been "ruled out". I get the sense of your little boy living in a world that is not the right shape for him and he is incredibly frustrated... he of course needs specialised help. I know how exhausted and fed up you are with all the evaluations, etc, but is there any chance you can take him to be evaluated at a big city centre, maybe a university hospital?
    Hugs. Sorry it is so hard. With accurate help it will be less hard, so you have to track that down.
  5. DaisyFace

    DaisyFace Love me...Love me not



    If the school thinks everything is fine - then I think you SHOULD let him go the full day. Either it WILL be fine...and you will get a much-needed break. Or Occupational Therapist (OT) WON'T be fine - and then the school will realize you were right all along. That sounds like a Win-Win to me!
  6. Ktllc

    Ktllc New Member

    Just picked him up, he seemed to have survived. His behavior has not been the best lately and I don't think it will gt worst (?), it was nice to have an extra 2hour break! :)
    The neuro psychologist got in touch with me and I have faxed back all the paperwork... I did mention that I don't believe the sensory processing disorder (SPD) is causing us issues, but something else. He might have sensory processing disorder (SPD) and need all that extra sensory input (jumping, running, crashing etc), but that is not off limit in our house. He naturally does his own therapy and conflicts never rise from his energy level.
    I was wondering how Autism Spectrum Disorders (ASD) and Pervasive Developmental Disorder (PDD) are different? Could the psychologist have ruled Autism Spectrum Disorders (ASD) but not have thought/tested Pervasive Developmental Disorder (PDD)??
    Will the neuro psychiatric pick it up if it is there?
    And once we have a label, do we have the local resources to help him??? Or should we plan on moving where help exist?
    Yeah, I don't think I can pretend everything is fine. But, maybe, I need to force myself for a couple days... Just to take a break.
  7. Malika

    Malika Well-Known Member

    Perhaps you don't have to pretend that all is fine so much as genuinely accept what is fine... Apparently he is fine at school - so take that and run with it :)
    How was V's early speech and language development? This is also supposed to be one of the predictors of autism/Pervasive Developmental Disorder (PDD)... But don't think about that for a couple of days if you'd rather not!
  8. doubletrouble

    doubletrouble New Member

    Sounds a lot like my ds13. He went to Occupational Therapist (OT) for about one year after being diagnosed--by the Occupational Therapist (OT)--for sensory processing disorder (SPD). I was told by her that sensory processing disorder (SPD) and adhd can present the same, but that he definitely had sensory processing disorder (SPD). So we never had him tested for adhd, until he was 13 and almost getting expelled from his jr. high. To make a long story short, he tested positive, was put on adhd medications and has had no behavior problems in school since. (He can still be a defiant stinker at home, though.) I WISH we had considered ADHD earlier.
  9. buddy

    buddy New Member

    yeah, You have it in your signature already and if no one has tried to use autism methods with him then it is truly worth a try. Behavioral therapy does not work for kids with Autism Spectrum Disorders (ASD) and that is probably why you are struggling. He may have sensory issues that are mild and play into it, but not the full story so that is why Occupational Therapist (OT) is not the be all end all either. so, not doubting you, because you live with him, but why say autistic traits but not austism??? I did that exact thing for years so just wondering.
  10. Ktllc

    Ktllc New Member

    Why say autistic traits? I am just repeating what I have been told by the behaviorist and the psychologist who ruled out Autism Spectrum Disorders (ASD).... The psychiatric had a Master level, the neuro psychiatric we will see (soon!) has a Phd level. Maybe that will make a difference in the testing and findings.
    One of the reasons Autism Spectrum Disorders (ASD) was ruled out: he understands how a conversation is supposed to go (back and forth) although he mostly was centered on himself and his interests. But she said that he had the concept. She says "the quality and nature of his social and communication difficulties, while similar in some regards to children with Autism Spectrum Disorders (ASD), do not rise to the level that and Autism Spectrum Disorders (ASD) appears warranted".
    husband and I both feel that V could blossom if he had a teacher who knew how to reach him. The few times I was able to do so, he was SO proud of his work and the results stuck with him. But it is very emotionally intense for me (and him) to actually teach him (parents don't always make the best teachers!). At school, he plays on his own and just gets lost in the crowd. He still scrible like a 2 year old and the teachers don't try to teach him. V explained that they give him a pencil and paper, right his name on it and then live. He told me that he does not know what to do.

    It's hard to realize that I simply don't have the skills to reach him. I need someone to show me, to explain how to proceed. Who will teach me autism methods if V appears too high functioning for a diagnosis???
  11. TeDo

    TeDo Guest

    Autism Spectrum Disorders (ASD) is a spectrum. difficult child 2 is VERY high functioning and can converse with ANYONE in an appropriate manner about anything and can maintain eye contact BUT has rigid thinking, need for routine, obsessions, etc. His diagnosis is Pervasive Developmental Disorder (PDD)-not otherwise specified which is also on the spectrum. I hope the neuropsychologist is more up-to-date on the Autism Spectrum Disorders (ASD) stuff. The rule here is "always trust your mommy gut". I will try to find some books that teach what you need to know about teaching kids with Autism Spectrum Disorders (ASD).
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Autism Spectrum Disorders (ASD) and Pervasive Developmental Disorder (PDD) are the same thing. I think that you should see a neuropsychologist. They do actual testing, from 6-10 hours of it. I wouldn't trust a regular psychologist or a behaviorist to diagnose my kiddo. Neuropsychs are way different than regular psychologists and I have no idea what kind of education a behaviorist has...sounds like somebody who relies on behavioral methods only to deal with our kids...sadly, often this does not work with our differently wired kids.

    I was told "autistic traits" for my son too at first, but he is on the autism spectrum. That diagnosis. came later. For us it opened the door to a lot of help. It explained a lot too and we were able to adapt our parenting to h is unique look at the world. He has really improved A LOT with all the help he has gotten. He no longer rages or acts out hardly at all. In fact, he's a pretty mellow guy and always was, except when he was exposed to too much stimuli or too tired or overwhelmed. Autistic spectrum kids of all stripes are very easily frustrated and that's where we see a lot of that ODD-type behavior, but it is really NOT is overstimulation. Autism Spectrum Disorders (ASD) kids/Pervasive Developmental Disorder (PDD) kids usually have A LOT of sensory issues too.

    I think seeing that neuropsychologist is a good first step in the right direction. Meanwhile, is there any respite in your area?
  13. buddy

    buddy New Member

    This is classic high functioning/Asperger type of conversation. I actually had one clinic say that about Q too, he scored smack dab in the autistic range on the ADOS and they said his eye contact didn't rise to the level...blah blah blah....

    Well, he had another medical clinic and two school evaluations say differently. so crazy how they can make such a conclusion from one visit. I think that it is true for all kids, it takes the right teacher to bring our kids out. i hope your next evaluation will look at the bigger picture. Even Q has back adn forth communication, but it is all on him and if he wants a convo to go on he will just ask questions. I have had long conversations with many an Autism Spectrum Disorders (ASD) child.... Ask TeDo, her kids are amazing conversationalists. I know my son and I would be found dead on the floor if I had to teach him, lol... I get that too.

    It will be so interesting to hear what the neuropsychologist says, especially given all the new information. OH gosh, that he plays by himself, that says tons... to pin a no to a diagnois for one symptom..that makes no sense. For now, they need only a few symtpoms in each of a few categories. That is why kids look so different with Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorder (PDD).

    You can ask us! You can call an autism center if there is one by you. Explain that your son was diagnosed with autistic traits and you want to have some methods to help work with. There are some wonderful books and I still use several of them. I will work on a list of my favorites ok? If I lose this thread pm me so I can remember....
  14. Ktllc

    Ktllc New Member

    At that point, I am really doubting her diagnosis. But I know she based her diagnosis on several observations... we talked to her for 1 hour (all 3: husband, V and myself) and kept him for 45min to run the tests, finally talked to all of us again for about 1 hour. Whatever V is, he is definitely high functioning in the sense that he does not stand out to the untrained eye.
    I have inquired about respite, but since we have no "good" diagnosis (sensory processing disorder (SPD) often not recognized) I doubt we will get it. I'll ask the behaviorist and see if she can make a referral. I know that my stress makes things worst for V, it's like being caught in a vicious circle and it takes a lot of energy and good karma to break it. I need to spend some quality time with him to restore things, but I need a break from him at the same time.
    If the behaviorist is not too lousy, maybe she can give some idea on restoring our relationship that stress is damaging everyday. I need to stay practical, because let's be realistic: V will not change even if he wants to.