i don't know what to do

Discussion in 'General Parenting' started by italiansass, Jul 10, 2007.

  1. italiansass

    italiansass New Member

    I have a 5 yr old who was diagnosed last year with ADHD. He also has CP. This past year he has been on several, about 5, medications. And he is currently on Clonidine. He takes 3 pills a day, .1mg. Today, he seen a new doctor, who basically, I felt attacked me. He went on and on about the amt of medications he has been on. And that that shouldnt have been the case, when it wasnt me prescribing the medications, it was his doctor. And his blood pressure was high today, and he suggested taking him off of the clonidine altogether. But he didnt give me any options I felt for otherwise dealing with my son. Other than saying that he was one of the most active childs hes seen in his career. And that he wasn't sure if he could help him or not. I don't know what to do. I don't know what to feel. Spanking him doesnt work, time outs don't work, talking him down doesnt work. What am i to do? I feel exhausted, alone, and bewildered. Any ideas would be helpful and appreciated.
  2. Marguerite

    Marguerite Active Member

    What a weird doctor! One minute says he doesn't think he can help, the next he's berating you and wanting to change difficult child's medications... can't have it both ways. Generally when a doctor takes it on himself to change a patient's medications, it's a way of saying, "You are now my patient, I will follow through with this and take charge of your health care form here."

    You will find doctors like this - they became doctors because they wanted to eradicate all illness. They are more pathological than most of the patients they see!

    And that's what they call it PRACTICING medicine - some of them NEVER get the hang of it!

    You can't punish a kid for what he can't change or can't control. If you do, all you're teaching the child is that he will be punished for who he is.

    Get your hands on "The Explosive Child" by Ross Greene. There is also some discussion of this book on the Early Childhood forum. This book helps a lot. Not everybody on this site swears by it - just most of us. It will certainly help you faster and more effectively that this doctor!

  3. JJJ

    JJJ Active Member

    First, welcome. I'm sorry you had to find us, but welcome to your soft place to land.

    Second, I wouldn't go back to that doctor. We left several doctors after 1 appointment -- including the one that recommended institutionalizing our 4 year old (this after less than 10 minutes).

    And finally, have hope. My youngest difficult child was just like that at 5. He is now FINALLY starting to gain control of himself. It was a combination of finding the right medication combo (and we went through alot), behavioral modification (get Ross Green's Explosive Child), and time. He is finally stable enough on his medications and has made the developmental progress needed to really start working on his behavior.

    He is still a handful but is responding to verbal correction (rather than needing to constantly physically redirect him), he is able to express regret for his action when he does something wrong, and his ability to participate in family life (sit at the table, do small chores,etc) is increasing.

    We just started therapeutic horseback riding and he is even calmer after he rides :smile:

  4. gcvmom

    gcvmom Here we go again!

    We just had a similar experience during a second opinion with a psychiatrist at a university hospital. Needless to say, we're not going back there!

    I would encourage you to keep looking for a doctor with a better fit for you and your son. Some good places to ask for references are your pediatrician, children's hospital, insurance company, or CHADD.org. Or even asking around through people you know in your community. We happened to find our current psychiatrist (with whom I'm actually very happy) through an Occupational Therapist (OT) office and a therapist's office (both places recommended this guy).

    It's very hard to not feel discouraged, so I completely sympathize with you there!
  5. Sunlight

    Sunlight Active Member

    can you contact the CP foundation? my nephew is 12, ODD and also has cerebral palsy. he gets lots of resources that way.
  6. italiansass

    italiansass New Member

    Yes I have already ordered the book by Ross Greene, I am ready to try anything with him. Because it seems nothing I do works with him. Time outs don't work because he tries to hurt himself, and bc he can't feel pain normally it doesn't affect him, just me. And holding him to calm him doesn't work, it just enrages him more. Yeah I'm definitely not going to go back to that doctor. Me and my fiance took custody of Joey when he was a year old, and in that time I have never felt so attacked or insulted as a mother to him. I have tried my best to give him everything that will help him live a stable and quality life.
    And I am searching for a doctor, but because we live in the country a doctor isn't easy to find. I'm thinking that I'll contact his pediatrician and see if she'll refill his clonidine until at least November, because I found a really good doctor but his next appointment isn't until November. He done his residency at Johns Hopkins and his special interest are ADHD and devlopmental delays.
    Joey isnt by any means a bad child. He is very loving and very happy usually. And I can't sit with him and read to him, and he has a leap pad that he loves. He knows his ABCs, his basic colors, and can count to 10. When he was diagnosed with CP at 18 months, his neruologists said that almost half of his brain was brain damaged, and that I really shouldn't expect to much from him. So all the things he does I'm extremely proud of bc those are things he wasnt expected to do. To look at him you wouldn't even know he has CP. He is very smart. And to have that doctor tell me that he was one of the worst kids that he has seen in 30 years, it made me so mad and upset.
    I think that if I could only find a behavior modification for him that worked that it would be okay. Because his worse habits are his whining and his meltdowns. I mean he gets extremely explosive and I'm sure I have contributed to this, bc he gets so out of it that I just give in to him. I don't know. I hate it for him, he didnt have the best of life to start out with. HIs mother abused and neglected him, probably contributing or even causing the brain damage in the first place, and I hate that he'll never probably have like other children.
    But I don't think I am a bad mother, I do no different that hundreds of other mothers out there. So I just didn't get why I should be made to feel like a bad mother by that doctor.
    Joey does receive speech therapy, occuptional therapy and physical therapy. And his Occupational Therapist (OT) is working on sensory with him.
    So I don't know, I do know that this actually helps to speak to other parents that have children that are behaviorally challenged. My family and friends don't seem to get it, they think that I make excuses for Joey, and some say theres nothing wrong with him, yet none of them will watch him not even for a couple of hours. And thats okay, bc truthfully I don't think I trust anyone else with him. I know how frustrating it can be with him, and at least with me I know hes safe.
    Anyway, Im sorry this was so long. But thank you sincerely.
  7. Marguerite

    Marguerite Active Member

    The issue is, regarding discipline - you need to be consistent. And you need to NOT do anything that isn't working or that you can't follow through with. Ignore bad behaviour rather than half-heartedly correct it then drop any consequence. At least if you're ignoring it, you're sending the message of, "I'm not dealing with this right now; nor am I acknowledging it." of course you can't go on that way, but unless you can follow through, don't start anything. Or you make the problems ten times worse. Fast.

    He sounds like a bright kid. He also sounds very frustrated, but a lot of things (including physical limitations). As a starting point, don't punish the behaviour borne of frustration. ignore it. Move him somewhere safe and ignore him. He might threaten to hurt himself but if you remove anything he can use to injure himself with, then walk away and leave him until he calms down, you might get better results. If he STILL hurts himself and does real damage, take him to the hospital. That is not good. But I'm betting he's attention-seeking and not serious about the threatened self-harm (although you may feel I'm wrong, and I could be - trust your instincts, please). Generally, a smart kid who is merely frustrated, won't do himself serious harm deliberately.

    If holding him makes him worse, don't do it. It may be great for some, but not for others. You find what works and do it. You stop doing what doesn't work. It's as simple as that.

    it's not a perfect answer but it's a start. All you can do is make a start. To think of anything else is just too overwhelming.

    He seems to respond well to academic stimulation - give him more. Throw more at him as long as he can handle it. Challenge him with puzzles, complex problems, whatever you feel will help him develop.

    I know how you feel about not letting anyone else watch him - we were repeatedly offered respite for difficult child 3 but I could never bring myself to take it up. Respite is great if you can use it but not all of us can.

    Turn off your guilt. It's a waste of energy. Turn off feeling bad that he will never be normal - what is normal, anyway? All this is slowing you down and putting up a barrier for you. He may be sensing this and resenting what he may feel is your pity. Also, don't talk about any of this in front of him or where there is any possibility of it being in his hearing. Our kids are always smarter than we think. They are also VERY quick to take on their own personal burden of guilt and inadequacy.
    Instead, teach him that he can do anything he puts his mind to. A book I would recommend (try and find it in the library) is "I Can Jump Puddles" by Alan Marshall. it's an old Aussie book but a darned good one. Marshall was an author who contracted polio when he was a young boy. This changed his life as his plans to be a horse breaker like his father, had to go. He would never ride a horse, let alone be able to break one. ALL his knowledge counted for nothing. Or so they thought.
    It's an entertaining, uplifting read about living with people trying to protect you, but still trying to be a 'normal' boy. It has been made into a mini-series starring Adam Garnett and later Lewis Fitzgerald as Alan - the mini-series may only be available in Australia; and a movie was made in Czechoslovakia, of all places. All are entertaining - the book, the film and the mini-series. And all are very different but the message is the same - when you see t he boy not only riding the horse but jumping it, you can only marvel at the stubbornness and glory of the human spirit.

    A man I met at a major charity fundraising committee has cerebral palsy. He is hard to understand sometimes, when he speaks. But when he speaks the room goes quiet because he is ALWAYS worth listening to. He has difficulty walking but holds down a very senior position as an accountant - he was actually the treasurer for our state combined charities committee. Very respected - I later saw him interviewed on TV about something to do with accounting. An amazing man, a sharp wit and someone clearly who's found his niche in life.
    We have another bloke in Australia with cerebral palsy - he's a stand-up comic. A rebel, always the difficult kid, he admits to having been a big behaviour problem. His stage name is Steady Eddie. Also someone whose CDs would be worth tracking down.

    I tell you this not so you can share this with your son, but so YOU can feel positive and not negative. If your son wants to go climb a tree, let him. Don't help him unless he asks for it.
    Our neighbour's son had a near-drowning incident which left him with severe cerebral palsy. Her son was a year older than difficult child 3. At the time I could see the problems she was living with, but I could also see the different problems difficult child 3 had. Although her son was non-verbal and for a long time had lost any English he had learned he would respond to me if I said ANYTHING in Spanish, even the 'count to 10' which is all I can do. I could see his eyes intently on my face, encouraging me to keep trying. At the time he was a physical wreck who people said should have been allowed to die. He had no controlled movement of his own at all; no swallowing; his eyes would roll up into his head at first; he was completely dependent.

    They moved away some years ago but last I heard he was learning via a computer, using it communicate, was eating and drinking normally and learning to walk (a Hart walker). And, of course, still bilingual. He could move himself around on the floor and would get himself up onto his knees. His parents keep saying, "He can do whatever he wants - he is already doing more than they ever said he would." I know that if he indicated he wanted to climb a tree, his father would climb it with him.

    You don't have to be Supermum. Just mum. Your aim is for him to be happy, productive and independent. He's got a few obstacles to this and will need your help in finding ways around them, but he can do it. He's already on the way.

    The bad behaviour you see, the frustration - it's a very healthy sign. he's fighting. It's far better than if he was just giving up.

    All you can do is help him deal with it productively and channel it.

    He is not a normal child. You need to think (and operate) outside the square. We all do. It sounds like you've already begun to do this. Have faith in yourself, your feelings and your decisions. And have faith in him also.

  8. SRL

    SRL Active Member

    Originally Posted By: italiansass
    Joey isnt by any means a bad child. He is very loving and very happy usually. And I can't sit with him and read to him, and he has a leap pad that he loves. He knows his ABCs, his basic colors, and can count to 10. When he was diagnosed with CP at 18 months, his neruologists said that almost half of his brain was brain damaged, and that I really shouldn't expect to much from him.

    I missed this part about quite significant brain damage beyond CP in your other post. Is he being seen regularly by a neurologist? If the last time he was evaluated by a pediatric neurologist was at 18 months then it's time for a followup appointment. There sometimes are issues such as unrecognized seizures taking place that can contribute to behavioral problems.
  9. italiansass

    italiansass New Member

    Joey does see a neurologist regularly and matter of fact I have had him tested for seizures, and he just recently had another MRI.
    And I don't pity Joey, nor feel sorry for him. Nor for myself. And it's not like I expect him to be like other children, I know he is his own person. And that he is just as special as other kids, if not more becuase of the challenges he is going to have to face. And I know part of my problem is not being consistent with him. But I have been trying to be more consistent, not giving in to his whining, and setting him down and making him sit down until he's done with his temper tantrums. And yes I agree with you, he is attention seeking. And I don't think he wants to hurt himself. But what concerns me with him, is he can't feel pain normally so he could very well do something to hurt himself and him not know it. I have seen him head butt his head so hard that his eyes roll back in his head and he near passes out. So thats what concerns me, but Ive noticed if I'm not focused on him that he doesnt really do the temper tantrums as bad as if I sit there and watch him. So I'm learning to walk away.
    I do have faith in him, and I have faith in myself as a mother. But its always a concern in the back of my mind, that if theres anything I do wrong, his birth mother, if she ever wanted to try to get him back would use it against me. And I could never stand to lose Joey. This is so much harder, but I love him and I am committed to getting him the life he deserves.