New member popping in to say "Hi"

Discussion in 'General Parenting' started by no one gets me, Nov 30, 2012.

  1. no one gets me

    no one gets me New Member

    Wow, Google led me here when I looked up medication wash, because a friend's daughter was in the hospital for one and I didn't want to sound stupid and ask. But boy, did I need to find this place!

    I hope my signature does a decent job of telling a bit about us. I struggle quite a bit with my own issues, and as my username states, no one really gets it. My difficult child knows how to use my issues to his advantage, and it is hard to tell what is actually related to his diagnosis, and what is simply a smart kid who knows how to get his way.

    This is the first year in school that he has an IEP in place, and it shows on his report card. There were no negative remarks about his behavior. I also don't get calls from school on a regular basis anymore to address suspensions, etc. He is incredibly smart. Way ahead in reading and math, and needs very little instruction when he is given new types or harder types of math problems to work.

    He was diagnosis'd with ADHD almost 2 years ago. It was his second evaluation. I had taken him in a year before that as well. I was more concerned about his lack of social skills, and was worried about possible Autism Spectrum Disorders (ASD). But that is really all they looked for in that evaluation. Once his school had complaints and plenty of them to back up what I was saying, they had me bring him in again. He's been on Concerta now for a year and a half, and while it makes some positive differences for him, I really hate the negative side effects. So he only takes it on school days, or on days when he will be expected to sit quietly for something.

    Very recently, I recorded him making the noises he makes in his sleep and played the recording for my sleep medicine doctor. He wanted to get him in for a sleep study, because he was hearing airway collapses. He wasn't just making noises, he was struggling to breathe! So we scheduled a sleep study and sure enough, he has borderline severe sleep apnea. He was referred to ENT to talk about the possibility of surgery to open up his airway, and that doctor said "Yes. He has very large tonsils and adenoids. Let's get those out and see if we can get him breathing easy while he sleeps."

    I can tell you that the surgery made a huge difference in the quality of his sleep. He doesn't thrash around or make noises or snore anymore. (He sleeps in my bed, so I really noticed a HUGE difference.) Now our struggle is the Concerta. The negative side effects are really outweighing the good ones. The way it was explained to me is that children with sleep apnea may be misdiagnosed with behavioral disorders. All of the doctors I have talked to have confirmed that. But we have another month before the next sleep appointment, and then who knows how long before they can get him in to redo the sleep study. I'm tired of the zombie who comes home from school. No emotion, just a flat "Jackie Paper" boy who looks like my difficult child, but acts nothing like him. He wasn't like this before surgery. I don't think he needs to take it any more, or at least have his dose reduced. (YAY! Doctor just called and will cut his dose in HALF!!:choir:)Let's just hope he doesn't go back to rolling around on the floor and running out of the classroom.

    My own story is a very complicated one. Suffice it to say that I'm an enigma. When I say no one gets me, I mean even the doctors.

    When I was taken to a psychiatric ward on a 51/50 last year, the doctor told me he was surprised I had made it as long as I had without having a serious breakdown. I told him I hadn't, I had just managed to hide it all well enough to avoid appearing to need help until then. So I have learned to look for help for myself, and to accept it when it is offered, as I had been doing for my son.

    Maybe this will just be a temporary place for me, but I appreciate just having somewhere to put my struggles out there without feeling exposed.
  2. DDD

    DDD Well-Known Member

    Welcome aboard. Glad you found us. It's great that the Dr. responded so quickly to your request for a reduction in the Concerta. That is the stimulant medication that was most effective for my difficult child's. Their little sister takes Vyvance and has had few side effects. You'll notice that quite a few of our parents have a number of diagnosis's like you do. I can only imagine what a challenge it is coping with a difficult child when you have issues of your's hard enough with-o any diagnosis's.

    Time for me to get back to work. Others will be along to greet you. DDD
  3. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Hi NOGM and welcome to the board!

    Glad you found us and happy you feel comfortable -- often that's what we are looking for. You have found a place of warm support and wise advice.

  4. TerryJ2

    TerryJ2 Well-Known Member

    Welcome, noonegetsme! Glad you found us. You certainly are on the right track with-dxes and medications and the IEP. You certainly know how to advocate. You're WAY ahead of most newcomers. Bravo!
    So, tell me about your difficult child and what this rolling around on the floor thing is. Is he stimming? Anxious? Bored? Angry?
    Maybe he needs a weighted blanket.

    I noticed in your signature that you have fibromyalgia and sleep apnea ... I'm sure you know that lack of sleep and stress are huge factors in fibromyalgia. They go hand-in-hand. I hope you are taking an anti-anxiety medication. And even though you have fibro, I would suggest exercise, maybe swimming.

    I hope you stay with-us.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Send me a private message. I'm another one who baffles psychiatrists and neuropsychs. For starteres, I have face blindness, neurological soft signs, and other really weird stuff. Nobody gets me either, not even
  6. no one gets me

    no one gets me New Member

    I don't think he's stimming, although I had never really given that much thought. It is more a way to be defiant. Like the way a child will become a wet noodle when you try to pick them up and they don't want to be picked up. He's a bigger kid, so he knows it is hard for anyone to force him to do what he doesn't want to do if he gets on the floor. He does have a tendency to pace though, and again, never thought of it as stimming, but it makes sense now.

    He has only done that once with me, and it was in a bagel shop. I just ignored it and walked out the door. He got up and followed me and has never done it again. He's a good button finder and pusher. He knows how to get under your skin and he really seems to seek ways to do so. I have always believed the issues at school are from boredom. He is such a fast learner, and the ridiculously simple homework sheets he brings home make me sick. He wants harder things to do, so I give them to him. He has a math workbook at school that is above his grade level that he can work in after he has done his class work. I understand that they have to give the kids the building blocks so that they will be able to do advanced math later, but it really bothers me that they are more concerned with how a child gets to the answer as opposed to that they can get to the right answer. Maybe we'd be higher in ranking in the world in the US if the focus on math was changed to help student find a way that makes sense for them instead of insisting that they do it a certain way. There is no way I can help him with his math now because I wasn't taught to do it that way. Its a subject I will be bringing up in parent teacher conferences.

  7. TerryJ2

    TerryJ2 Well-Known Member

    Good idea to bring it up with-the math teacher.

    In regard to rolling on the floor, I was at my wit's end one night at the grocery store and difficult child was on the floor, having a tantrum. I sat down next to him, started kicking my legs and screaming. He stopped and said, "MOM, you can't do that!"
    "Oh? Why not? You're doing it." (Notice that he stopped long enough to tell me that.)

    I told him I'd stop as soon as he did. He stopped.

    That sort of thing doesn't always work, but I have tried everything at least once. :)