We need advice....

Discussion in 'General Parenting' started by JsGrama, Sep 25, 2017.

  1. JsGrama

    JsGrama New Member

    I am seeking advice for my grandson. He is a 9 year old, very spirited little guy, my whole world. Sadly, his world is in chaos. He has been diagnosed with ADHD, ODD, and Obsessive Compulsive Disorder (OCD). I feel it's not so much ADHD as it is ODD. We can handle him however school is a whole other issue. He is currently being medicated, not the route we want to go, school says otherwise. He is hellbound and determined that he is not going to school. Period. He begs me not to make him go. Today I got yet another call to come pick him up. He was throwing chairs at the staff this time. He is very defiant with any authority figure, and in his head he needs to be in control of whatever is happening. Once he starts feeling he is not in control, all hell breaks loose. This is not a case of spoiled child syndrome. He gets disciplined, loses priveledges etc. Our issues include lost jobs, having to be at the school so often, he gets insane angry to the point of hitting, kicking, screaming, throwing things, damaging walls in my house and so on. He is involved with people and programs that supposedly are thete to help him. Doctors don't listen. We are doing all we know how to do. Our fear is that at some point we will be dealing with social services and I won't have it. He is not going to become another statistic, another lost kid. There has to be a way to break thru and get our little guy to settle down. The negative behaviour started when he was 3 and he was diagnosed at 5. Any suggestions??
    Last edited: Sep 25, 2017
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have one suggestion only. Kids are misdiagnosed all the time, especially very young kids. The combination of diagnoses could very well be high functioning autism, which causes a very low level of frustration, sensitivity to noise/touch/overstimulation, an inability to stop doing one thing and start another, high anxiety, dislike and fear of new things, and sometimes early delays in speech and other areas. IQ can be normal or very high.

    My son was wrongly diagnosed with ADD/ODD until age 11. He is 24 now and doing great.

    Go to a neuro psychologist. You can find them in children's hospitals and university clinics. My son was tested for ten hours, in every area. It is not an IQ test.

    Of course it is up to you. To me he sounds as if he has big red flags for autism and pediatricians and regular therapists do not do intensive testing and often mistake Autism Spectrum Disorders (ASD) for ADHD/ODD and pump them with drugs which often dont help. My son did really well on no medications and with autistic iterventions. This is after various dictors told us he couldnt be on the autism spectrum and gave him a bunch of wrong diagnoses, including bipolar at age 9, and put him on a slew of drugs.

    My son is a calm, happy, unmediced adult with some quirks, but everyone loves him. He would not be where he is without the right diagnosis and proper treatment. Now he is on his own and paying his own way. We are so proud of this great young man who was so challenging when young. Obviously he never had ODD or bipolar. I never quit looking for the right answer, the right help that would make a difference. Neuro psychologistsare psychologists with extra training in the brain. They are nothing like neurologists...do not mistake the two.

    Whatever you decide to do, good luck.
    Last edited: Sep 25, 2017
  3. JsGrama

    JsGrama New Member

    I am so happy things turned out well for him ❤ We will keep pushing. No way am I giving up on him. We have talked about autism but like I said, they don't listen. He is working with a therapist. Fingers crossed.
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Therapists cant tell. We tried that too. If a professional won't listen, they are unhelpful. Find someone who listens. Do you have custody?

    Bless you.

    Please try a neuro psychiatric. Take care.
  5. susiestar

    susiestar Roll With It

    Tell your pediatrician, the doctor he sees for checkups and colds, that you think something was missed. Ask for a referral to a developmental pediatrician and to a neuropsychologist. If you get resistance, push back. Insist. Take your grandson in for an appointment and make sure it is at a time when he will be tired and let the doctor see some of the behaviors. Not a full blown rage, but a difficult time. I often found it was far more effective at getting doctors to do what I wanted. Or else I took in video and made them sit and watch it in my presence. They griped about it, but what did I care that they were not happy? I was paying for there time, I got to tell them what to do in that time. Period. Yes, I can be a bit insistent with them, but only if being nice doesn't work the first 2 or 3 times. Or I am really tired of the bovine excrement being given to me on my child's behalf. Learn to be assertive for your grandson, and teach his mother to be also.

    Rquest an IEP in writing. THis puts into place federal protections. Each time they send him home from school is a suspension. They only get 10, or maybe 10 days of suspension. I am not sure if it is days or suspensions. Either way, there is a limit and sending him home early because he is having a fit, well, that counts as 1. If they do it 2 days in a row, but he went to school in the morning? If you send a letter requesting evaluation for an IEP, that puts those protections into place and they only get 10. Then they have to evaluate his placement.

    Your son has a legal right to what is called FAPE in LRE. That is a Free and Appropriate Public Education in the Least Restrictive Environment. Maybe he needs an aide. Or occupational therapy to help with sensory integration disorder. This can be a HUGE problem for kids on the autistic spectrum. I will be blunt, your son sounds like he might be. I am just guessing here. SWOT and I often think alike. But my son (now 26, fully self supporting and living in his own apartment) has a very high functioning form of autism that used to be called Aspergers. He has separate diagnoses of ADHD and Obsessive Compulsive Disorder (OCD) (or CDO as he calls it, because then it is in alphabetical order, yes, I do insert an eyeroll there!). He certainly also had ODD, but that is a garbage diagnosis.

    ADHD and Obsessive Compulsive Disorder (OCD) are often part of autism spectrum disorder, especially the type my son has. The Obsessive Compulsive Disorder (OCD) includes becoming obsessive on a particular subject. It is part and parcel of Aspergers. My son learned to moderate this in certain social situations because we refused to allow him to only speak about his obsessions. He was high enough functioning that we could insist on this. Many kids are not high enough functioning for their families to make this happen.

    Adhd is real. Stimulants really do help. I can see why you would be distrustful. But they don't work like stimulants in someone who truly has adhd. What if the hardest thing you had to do all day was to sit still? You had to do it ALL DAY and you simply were incapable of it? I bet after 3 years you would be pretty angry at those authorities who didn't recognize that you were not trying to be badly behaved. They yelled at you no matter how hard you tried. You got into trouble no matter what, so after a while, you figured you might as well do whatever you wanted, or even do the opposite of what they wanted. This is what a LOT of adhd kids end up doing, esp the boys. My mom is adhd and remembers being so frustrated and upset because no one ever recognized how hard she tried to not follow the 100 things per minute that popped into her head that just HAD to be done RIGHT NOW!!! Instead she got into trouble for not being well behaved like the other girls. She remembers this as early as first grade. If she was really interested in something, like a book, she would focus on it so completely that she would block out thoughts of everything else. Then she didn't hear when she was told to stop reading, or to do something else. So she ended up in trouble for that. She found it incredibly frustrating and difficult.

    We put my son on stimulants and my mom was skeptical. She hadn't realized that she had adhd yet. She thought that everyone's mind was like that. We lived out of state and she came to visit us. I let her take my son out to breakfast with his siblings without having given him his medication. I let her cope with all 3 of the kids on her own. Then when they got home (first peaceful coffee I had in months!) I got the younger two busy with something. I quietly said it was time for my oldest son's medications and he ran over to me eagerly. That shocked my mom, that he was eager for medication. Then I had him do something with my mom and I while the other kids were busy. The change shocked her. She thought he would be a zombie. He was NOT. He was calmer, but it was a thoughtful and more intelligent calm. It was clear that he was more comfortable in his own skin when he was medicated. That he liked himself better.

    My mom paid a lot of attention to my son's adhd over the next few years. She started to research it. Then with the help of a psychiatrist and some testing, she realized she also has adhd. She takes a small dose of a stimulant when she needs to focus on something like her checkbook or taxes. She cannot understand how she ever got an education without the help they give her. It is like having driven for decades with no glasses when she needed coke bottle thick lenses all that time! That is how she describes it.

    I call ODD a garbage can diagnosis for a reason. A diagnosis has two parts. The first is a list of symptoms or description of the problem. The second part is the part that aims you toward the help or the solution, the fix. ODD describes the problem, it tells you what it is. The kids do not react well toward authority, they have little respect toward it. It does not give you ANY clue as to what is causing it. ODD can come about because of bipolar disorder due to problems with brain chemistry. It can come about due to schizophrenia, where the person isn't perceiving reality correctly and is hallucinating or having delusions. It can come about because of autism where the person has no understanding of social rules and does not understand that we give older people respect even when they are being incredibly rude because we see their survival to that age as a real accomplishment. Or it could be because a brain tumor is pressing on part of their brain and causing it to secrete a hormone that is making wacky things happen. We just simply don't have a clue why the person is reacting that way.

    This is why the ODD diagnosis is not going to help. YOu can find people who will blather on about it, but they won't blather on about it in a way that will help you or your difficult child.

    To get some real help, go to the Special Education section of this forum and look for the form letter to send to your school to start the IEP process. The thread will talk about sending the letter via registered certified mail with return receipt requested. You MUST do this becauae otherwise you cannot prove they got the letter.

    Go to the link in the bottom of my signature and read about the Parent Report. Start writing on for your difficult child. Trust me, it will help you communicate with the doctors! It can be an incredibly powerful document, one of the most powerful tools you can find to help your child.

    Go to the list of books that we recommend and work your way through them as you can.

    The very last thing you should do to help your child? Do something very nice for yourself! Often!! This is very very important!!

    Welcome to our forum and please, take only the advice that works for your family and your situation.
  6. wisernow

    wisernow wisernow

    the advice above is wonderful. One other comment....is there any bullying going on at school?
  7. HMBgal

    HMBgal Active Member

    Sounds so much like my grandson at that age. We tried ADHD medications and they made him jittery and not feel well. We tried for 2 years on all different kinds and the rages continued at home and at school. Because he stopped growing and hadn't gained a pound in 2 years, the doctors took him off stimulants. The other piece for him was anxiety. So much anxiety all the time. Looking back, this was at the bottom of a lot of our troubles. He's so much better now. Perfect? Lord have mercy no. But he's in middle school now in a classroom with wrap-around emotional support, daily class meetings to talk things out, small class, etc. He's grade level academically (and way ahead in a few subjects). He says he feels safer in this class than in the general ed classroom. He's mainstreamed for computer coding, PE, and anything else that he says he wants to try. He is on a low dose of Abilify, but they now want to wean him off that, too. We'll see. A combination of the right educational placement and appropriate supports that are actually developed and followed consistently, natural maturation--who knows? Lots of variables but he's so much better when we got a handle on the anxiety. He's still unfocused and we are dealing with that. I'm assuming your grandson has an IEP.
  8. susiestar

    susiestar Roll With It

    I am curious. What does the school do when he starts throwing chairs at staff? Has he ever told you what specifically set him off? Why he threw the chairs? Has anyone ever asked him in a quiet, non demanding way? I mean asking him at a time when he is not being lectured or yelled at. Truly had a discussion about what it is that upsets him so badly that he starts throwing stuff at the staff.

    I am NOT meaning to imply that you don't talk to your child!! I just know how hectic life can be. How hard it can be to find a quiet time to discuss what is going on in a way that your child will actually open up to you. I used to have to take my kids out one at a time on "date night" so that we had time to really talk to see if anything was bothering them. Finding time and money for that could be a challenge with 3 kids!

    Does your son have occupational therapy for sensory issues? Has he been evaluated for sensory integration disorder? PLEASE, I beg you, get him evaluated for this. It is best to use a private occupational therapist because you get what you pay for. People with sensory integration disorder can feel like the world is attacking them = everything is too.. Too loud, too bright, too everything sometimes. Some people need more of a certain type of sensory stimulation, others need less of a certain type. Some need more of one type and less of another. Or more of ten types and less of twenty types. This is something that will always be with him if he has it. There are therapies that will help him greatly, but he will only be eligible for some of them for another couple of years. So he needs to see an Occupational Therapist as soon as you can.

    I am suggesting this now because I know that for some students, certain types of sensory stimulation can make them aggressive. They can't always tell you why, but there is always a reason why a child is acting out and throwing chairs. Sensory issues can be one big reason why that is hard to see but fairly easy to treat. To learn more about sensory integration disorder (Sensory Integration Disorder (SID)), read The Out of Sync Child by Kranowitz.

    One of the best things about Sensory Integration Disorder (SID) is the treatment. It requires no pills, so mom does not have to worry about side effects. One of the best therapies is brushing therapy. You use a soft brush in a specific pattern over the body and follow it with gently joint compression. Most children enjoy it or at the least don't object to it. You must be taught it by an Occupational Therapist, but then you do it at home or a teacher does it at school (it is done a certain number of times each day,. then the number tapers off after a period of months). This doesn't sound like it would do much. It actually rewires the brain - this has been proven!! I find that really cool, especially as no medication is involved!! I was told it would not work after a certain age but I really question that.

    The other treatment for Sensory Integration Disorder (SID) is called a sensory diet. You provide activities that give the types of sensory input that your child needs. My youngest needed deep pressure on the top of his head. So we let him sit on his head on the couch while he watched tv. We always had, mostly because I don't believe in fussing over things I don't need to fuss over. Suddenly I could call it therapy rather than ignoring something odd that he was doing!! The sensory things he needed to do were the things that he was drawn to. If you have watched for what your kid is drawn to in toys, games, crafts, etc... and provided that, you may already have provided much of the sensory stuff he needs just by following his instincts. For some kids it is more movement related. I know one family who installed a swing and a climbing apparatus in their basement for days when the kids couldn't play outside. Their son needed that sensory input every day, often all day. They padded the floor and walls. Then they learned they needed to pad the ceiling too, so they did.

    Kranowitz has a wonderful book called The Out of Sync Child Has Fun that is packed with activities to provide sensory input for whatever type of sensory needs your child has. She even has suggestions to make each activity less expensive. The activities truly are fun. I wore several copies of the book out. Every kid in the neighborhood would come running every time I got the book out. My children and several neighborhood children all started getting better grades and behaving better in school when we did more activities out of the book each week or weekend.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Great post, Susie.

    Oh, those sensory issues for sensitive kids!

    Also I once asked my Autism Spectrum Disorders (ASD) son what happens when he gets so mad that he acts out. He was young still, and like many Autism Spectrum Disorders (ASD) young ones, not good at explaining his emotions.

    "I dont know" was his first answer. Finally he said,"I get mad cuz Im frustrated." He stuttered while giving the second answer because it was so very hard for him to express his feelings.

    But I got it from then on. Frustration.

    He no longer acts out. He is still not good at expressing his feelings, but i think HE understands better and can calm himself, a skill he had to learn.