new here, 9 yr old son with diagnosis's

Discussion in 'General Parenting' started by cfa3, Feb 9, 2009.

  1. cfa3

    cfa3 New Member

    hello everyone,

    i came across this site in my desperate search for info and help in the itnernet. i have no idea what "difficult child" is as i see all over here. my son is NOT diagnosed with a conduct disorder, however his problems are conduct related and i always have trouble finding sites and forums where we "fit in". in brief, he is 9, formally diagnosed with ADHD, Obsessive Compulsive Disorder (OCD), Tourette's, and Pervasive Developmental Disorder (PDD) not otherwise specified. he is very smart, bright, kind, sweet, nice, warm, sensitive, emotional, delayed maturity, quirky, had tics but hasnt had them for 11 months, angry, temper, frustrated. He has been diagnosed since age 2! he always was different, had problems with aggression since age 1! he is normal IQ, does his 3rd grade school work, but we have had to change schools every year or even every few months since he was 3! we live in FL. he has attended public schools only because our city has no good private schools. anyhow, i know my son has problems that he cannot control. i know the aggression problems he has are like little explosions that he cant seem to control because he is VERY smart and has no comprehension problems and understands and can even talk to you about feelings, self control, good choices, etc etc etc on and on. I myself am even sick of talking about that stuff. it does NOT make any difference. now i know my son is very emotionally immature and has many problems with emotions, mood, processing his feelings and having typical thought patterns and responses. so i guess thats why he doesnt translate knowing that hitting other kids is bad with changing his behavior.

    i fear i am jumping aorund too much because i am so upset trying to understand and figure this out. at home and in general life my son is not easy or easy to handle, he is defiant, oppositional, but not to extremes and he is no longer aggressive at home or in the community, ONLY at school, and only on some occassions when a peer has rejected him or someone wont play with him or a teacher is scoling him, he responds with hitting, kicking, even biting! he has had to be restrained as recent as a few months ago and he is 9! this is a very intelligent child! he does not steal, lie, stuff like that, but somethingin his brain doesnt know how to not lash out violenty when upset. i dont know if its specifically the peers not accepting him that makes hmi aggressive, i dont know if he has some psychiatric disorder not yet diagnosed, i dont know if its some food he is eating, i dont know WHY and i dont know other parents of kids who are like this: high functioning, rational, normal IQ, not typical but not severe, yet who can also be aggressive at the drop of a pin! i have spent a life savings on the most expensive psychologists, neurologists, and no one can tell me anything exceopt he is very complex, hard case. i know that! so, i dont know if my case fits in here and if anyone here has anything to say in comment, but anything is appreciated, i dont know how to school him, to look for a private school in another state, to give up and keep him home, to try medication which i am not persnally a fan of (i am not a judgmental person and would never judge others for what they do to help their child!) etc. Thank you for reading! :sad-very:
  2. klmno

    klmno Active Member

    Hello and welcome!! difficult child means "gift from God"- otherwise known as "the child that brought us here". We use "difficult child" instead of our child's real name in order to maintain their privacy and security. Some people are more comfortable using the child's first initial.

    Many of our kids are not diagnosis'd with Conduct Disorder, and just as you mentioned about yours, our kids have problems that effect their behavior and make it a little harder for us parents to know how to manage them effectively, deal with their schools, extended family, etc. So, it sounds like you have found the right place and will fit in!! We understand your frustrations with trying to find answers and help and many here can share experiences. There is an amazing "cyber-friendship" and support system here.
  3. bran155

    bran155 Guest

    Hello and welcome. You have stumbled across a wonderful place to connect with others who are dealing with very similar issues. The people here are amazing, smart, supportive and truly have been a blessing in my life.

    I'm sorry you are having a difficult time. We all can relate to your struggle. Others will be along shortly to welcome you as well as give you advice.

    Just wanted to say hi.

    (((HUGS))) :)
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and welcome :)
    Why don't you tell us a little about what you've tried to help your son. Has he gotten services for both his Pervasive Developmental Disorder (PDD)-not otherwise specified and the Tourette's Syndrome? What about school? Can he make friends?
    Sounds like you and your little one have lots of your plates...please tell us more. Is he mainstreamed in school? Would a smaller environment be more soothing to him? Does he have an IEP?
  5. DaisyFace

    DaisyFace Love me...Love me not

    Hello and Welcome--

    You have finally found a place where the other parents have kids that are a LOT likes yours...and rest assured, we understand! And these children can be very hard to deal with....we love them...but we find their behaviors SO frustrating sometimes--and there don't seem to be any answers or magic pills that make life any easier.

    You will find the book "The Explosive Child" by Ross Greene recommended on this site over and over..If you have not yet read it, check it out for yourself. The author has some excellent advice for parents.

    You are not alone. We are all here for you--to provide answers if we can...and an ear if you ever just need to vent.


  6. cfa3

    cfa3 New Member

    Thank you for your reply. I have tried the following:

    -all natural diet, minimal gluten and dairy, nothing artificial, he is still on it
    -some vitamins, fish oil
    -sporadic behavior therapy but i do have a good handle on behavior at home and now am consistent with it
    -Special Education classes for the past 6 years
    -we did a yeast free diet for a little while as well recently
    -abilify at 8 yrs old which seemed to help for a few months then my son had the ugliest, most horrifying breakdown where he was suicidal and i thought we would all never recuprate, took months for him to normalize once we finally took him off the abilify

    As for "Services" for those, the services here in FL are horrible unless youre rich. we've have psychiatrists, a few psychologists, a few behaviorists, nthing has made any major impact on anything except some of the things ive learned from the behaviorists and the things ive learned from researching on my own. we tried talk therapy and wasted a lot of money as my son was/is too immature to do that and the supposed "great" therapist had no idea what to do with him. the tourette's has been confusing, his physical tics stopped exactl 12 months ago and have not returned, so i dont know what to think about that. they stopped as soon as i put him on a high magnesium program.

    he is not mainstreamed in school because whenevr he has been in a reg classroom, he has needed too much help to get by there on his own, and this district doesnt want to provide a one on one aide. we just made a change to yet another school where they say they will mainstream him, but im not sure how. he has had the smaller environment in a behavior classroom but the problems with that was that the kids in there were REALLY agitated and had a lot of problems which just made HIM act worse, so we just took him out. i havent tried private school because first of all we live in a horrible place for things like good services and any private schools and secondly, the one private school for special needs i did look into here said they dont take "behavior cases"! he has an IEP that i work diligently on, but my god, i work full time and barely have enough time to stay sane much less research the law as much as i would need to for him to have a really helpful IEP. i have tried, i have read alot and advocate and am a very squeaky wheel with the school system, but money and lawyers talk and complaining parents get the brush off.

    i appreciate your post and everyone else's., i am just trying to figure out how to help him, i think he may just be really emotionally distrubed and it justs manifests in ADHD and other symptoms i dont know because i cannot seem to find a doctor or psychologist who can figure him out. thank you!

  7. klmno

    klmno Active Member

    Unfortunately, therapists (as we call "tdocs" here) are disappointing many times. I second the suggestion to read The Explosive Child- it is not just for kids who are walking time bombs, as the name suggests and it can really help you as a parent to relieve some stress and frustration and help your child in an easier way.

    My son just recently had a bad reaction to abilify, too.
  8. Janna

    Janna New Member

    Autism Spectrum stuff is the pitts where school is concerned. Do they not have Autism specific classrooms in your area? With his Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis he SHOULD be getting Autism interventions.

    See about getting an Advocate. Call the Dept of Education at the captial of your state (or look online) and see if you can get someone to help you in the school setting. Mainstream, early on, in my opinion, is bad for Autistic kids. My son is 12 and still cannot maintain. It's entirely too much stimulation.
  9. cfa3

    cfa3 New Member

    Thank you, i will definitely get The Explosive Child, because he is explosive! we try soooo hard not chastise him, make him feel bad, etc but we dont know how to react sometimes. he will SAY, i dont have self control, help me help me, and i jsut dont know what to do but try and soothe him and then the next second he is acting viscious and mean again....this lasted for like 4 hours tonite. the thing is, that is kinda rare, this doesnt happen THAT often and sometimes he is even really emotionally stable and doing well and not acting like this AT ALL. do you all find that too? like a roller coaster? sometimes your child is pretty OK and other times really doing badly? its almsot like a moon phase or something. he will do well for a few months then be a wreck for a few weeks and so on and over and over.

    YES we have an he is now in autism supported program, but the thing is he is less autistic than he is ADHD and emotion problems and Obsessive Compulsive Disorder (OCD), so he doesnt fit in with those kids and thats why im looking for mainstreaming for some of his day. its so hard to make a fit! then he has these awful aggressive explosions or hitting classmates and everyone thinks he shoud be send to some maximum security or something! its like you cant win. i dontknow, we;ll see, im just trying to not lose my job and help my son and stay somewhat, if anyone who is not in this boat could begin to understand huh! thank goodness for places like this forum and you all have been very kind in replying to me, thank you!

    p.s. That abilify is the scariest thing i have ever tried! how frightening to try something that a doctor tells you is harmless and then go thru a living hell!
  10. TerryJ2

    TerryJ2 Well-Known Member

    Hi cfa3, welcome.

    You ought to fit right in here! So many of those behaviors sound familiar.

    I agree with-Janna, that with-a Pervasive Developmental Disorder (PDD) diagnosis you should definitely be getting good aides at school. That is a neurological issue, not just behavior. They are passing the buck.

    I've wondered about placing my son in a sped ed class, but didn't, partly for the exact reason you mentioned--the other kids are even more hyper and it can make my difficult child worse.

    I am so sorry about his reaction to Abilify. Sometimes we learn the hard way. :(

    When we started the gluten free diet, I still had boxes of wheat pasta and bread around the pantry and in the cupboards. difficult child found them and his behavior would go right back to Square 1. I finally cleaned out everything, gave away the wheat products to my friends and threw the rest away. A total clean sweep. I have Quaker Oat choc chip bars locked in my ofc and I carry the key in my pocket.
    I just mention this because your note said "minimal gluten and dairy" and you may want to take it to "no gluten and dairy." When we go to McDonald's, we get hamburgers with-o the bun. Lots of people do that now because of the S.Beach Diet. No biggie.
    I'm still learning about hidden gluten ... just last wk someone on this bb told me to watch out for some kinds of soy sauce. :(

    I am so sorry that you've had such middle-of-the-road doctors. Heck, *I* can tell you that your son is a complicated, difficult case! :) ;) And I don't get pd for it. ;)
    It is SO frustrating trying to find a good dr. All you have to do is troll through our notes here and you'll see that you're in good company.

    But don't give up. There are some good doctors out there. You will find one.

    I am so sorry that your son hits at school. My son is more the opposite--he holds it in all day and then lets me have it once he gets home. He has matured a lot and learned a lot from therapy. Right now we're going once a wk. When things are acute, we go 3X a wk. For a while, things were calm and we only went once a mo.
    Last edited: Feb 9, 2009
  11. Hound dog

    Hound dog Nana's are Beautiful

    Welcome to the board. :D

    You could be talking about my son as a child.

    I dunno. I know that with my Travis.......every emotion he feels is more intense than other people. So when he's happy, the boy is happy. If he was excited, he was all over the place excited. And if he was mad.....OMG was he mad.

    Once I realized it was all his emotions, not just the mad, somehow it made it easier for me to deal with. Which, by the way, he still is this way. Although as an adult he has learned to control the mad. We worked on that alot.

    I can empathize with the whole school thing. Let's just say I'm glad mine graduated. ;) But you'll get lots of good sound advice here about schools, services and IEPs and such from parents who really know their stuff. Without the guidance here, Travis may not have graduated at all.

    Sounds like you're already a warrior parent. :D Glad to have you aboard.

  12. robinm1922

    robinm1922 One day at a time

    CAF3 I just wanted to let you know I sent you a private message.
    This is a wonderful group of people here and you will find a ton of support!
    Best of luck,
  13. crazymama30

    crazymama30 Active Member

    Just wanted to pop in and say welcome. I don't have much to add, but just wanted to offer my support.