Q is repeating a demand over and over and over and over and over and over....

Discussion in 'General Parenting' started by buddy, Nov 26, 2011.

  1. buddy

    buddy New Member

    Now he is walking up the stairs to make sure I hear it louder and louder. He heard someone outside and decided to start saying I needed to unlock the new locks I put in. So he was at the computer saying , "come on do the lock" now he has said it at least 100 times and is getting closer and closer to me. I have said nothing and am trying to wait it out but the truth is if he escalates, like starts hitting walls or kicking them, I have to stop him because I rent and I have a town home on each side and a little one under us.

    Now he is saying it faster.... help me to ignore please.... I can do this... maybe I will go get some pie.
  2. Steely

    Steely Active Member

    Sending strength -
  3. buddy

    buddy New Member

    He is in full glory now.... Went to get pie and he grabbed it. I took it back thus pie was all over my hands. I threw it away. He just slipped into the lock pit and now is in that stuck place. Everything that has ever gone wrong ever is being brought up. He is staying in control just enough that when I remind him that I will not allow unsafe behavior nomatter what or why, he will go away and sit and breathe for a few seconds and then he starts up again. I am trying to just stay calm and type.... He finally has been quiet for about 50 seconds, maybe we are on the other side. He had picked up a tuna can to throw at me but I warned him I would call for help and he put it down. but was still jumping out of his skin. Since we have never had such serious safety issues before, this is new to him. Needing such a strong, no earning his way out of it kind of situation in our home. I usually can allow him to earn his way to priveleges but this is not negotiable. Not ready for that yet. If his switch can flip this quickly, then it is just not safe.

    Still not yelling anymore. And he just said, mom, I need to start over. I am calm now. I am going to be nice so I can watch tv tonight. I said, well that would be great but you need to find away to fix what happened. He said, I'm sorry. I said sorry only works if you never do it again, so think of another way to earn your way back to tv. He said, I will go potty and flush the toilet....!!! (OK, trying to be serious here and one of those automatic laughs came out) He said, really I will! I said, well, I think there are a few things you can pick up...like all your laundry and stuff.

    Darn, he hears people outside again.... yelling to see who is there again. YUCK please let him just go do the chores.

    Ok, quiet again...
  4. TeDo

    TeDo Guest

    Have you ever had that caged in feeling? He might be feeling that. Is there a way the two of you can do something to take his mind off the noise outside? Just a thought. It usually works for difficult child 1. Sending more strength your way!!
  5. Malika

    Malika Well-Known Member

    Sorry to hear this, Buddy. Do you feel worried that the violent actions will become a habit?
  6. buddy

    buddy New Member

    They have gone in waves... he has times when they are frequent and then nothing for months and months. We still have less than he has had in the past. But, he is bigger and stronger and has better aim. THAT is the problem. So, I did tell him, since I had already threatened to call 911 before and had already increased his anxiety... I had to discuss that with him at one point. I told him that because of the medication and safety issues, the team at the hospital and the police say I have to have a safety plan. I had to tell the police that we have some issues and so if I call I might need help with you until you can calm down. They said I must have the locks or you will not be safe sometimes. He didn't love that, but was not upset because I didn't say he was going to be arrested and taken away etc.

    So today I did tell him, if he can't settle down then I have to put our safety plan into action. I think that did cue him to start doing his relaxation stuff. I heard him taking deep breaths (hard to tell if he is huffing and puffing mad or trying to relax at times) But even though he heard people his yell actually was asking if that was our neighbor and his dog (my former student who is deaf and has a service dog...his voice is distinctive). He didn't escalate again.

    He asked for a quiet go no where day. But maybe we need to get out.

    Well, as icky as it is when it happens..... in the big picture, this was nothing. Hope he is all done.
  7. Malika

    Malika Well-Known Member

    This might be something of a 64,000 dollar question, but how much control do you think Q has over his actions?
  8. TeDo

    TeDo Guest

    Maybe try asking him if he needs to get out for a little while. Remind him it was his choice to stay home but that you are willing to take himout somewhere for X amount of time if he thinks that might help. He's a smart kid. You have your hands full (I know, old cliche but true today).
    Lasted edited by : Nov 26, 2011
  9. buddy

    buddy New Member

    some days he has some control. I think he doesn't have control over the sudden emotional surges he gets. and there are clearly times when he just is in full on, out of it, blurting and raging aggression, not in control. Some/most things are impulsive, though. But I think today, I could sense there was a certain amount of control. Can I explain to someone the difference??? I wish so I could say when it is worth trying to reason with him. I can see it in his eyes. His voice varies more... not just a panic sounding yell. But I knew today that I could remind him of what will happen (THAT he can't think of in the moment on his own) and that he would reconsider. He did.

    I do think that we are still recovering from hospital learned behavior. He picked up some tricks that need to fade out.

    Overall, maybe the new medications are making him more reachable in those moments? sad to say the only way I will know is to have more of them. There are full on months when he is clearly not in control of any actions... just gets hit with a surge and reacts and can't calm. I want to think he can learn to control more though. I see it most months, when medications are adjusted and working well, and when seizures are not zinging him into anger/rage. the blurts and some of the impulse jumping around etc... those at times, when he wants so desperately to earn something and to avoid a consequence...but still it happens, those I am sure he can't control. He gets too down on himself afterwards. Too desperate, asking for me to find a way to "fix" it.

    He told me again two days ago that he knows the only way to stop all of this is to die. (of course, then later after stepping on a mouse on a sidewalk, he forgot and didn't take his shoes off inside the house. He sat on the couch then ran to me and said, mom, I forgt to take my shoes off and dead mouse is on the couch...I wont die from teh germs will I?? He worries about diseases etc. and says he hopes to live to over 100 all of the time) so dont think he really wants to die, think he really wants the hard stuff to stop.

    by the way, there is no dead mouse on my couch..he just thought germs must have gone from his shoes to the couch. I keep our couch covered so I can wash it becasue there is no point with him....getting a new couch? not gonna happen. But a nice washable cover works fine.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Get this child tested for Tourettes. Do you have a neurologist you can take him to for this?

    Honestly, I think his reasons for the things that he does are a little different that the rest of our children because of his brain injury. Does he have a yearly CT scan or anything? Were you told that he may have some behavior problems due to the surgery? Did they remove all of the tumor? My mom had a brain tumor...it changed her behavior after the surgery...
  11. buddy

    buddy New Member

    Mwm ...hi. yeah he goes to the neuro frequently. Went last week will go to psychiatrist this week then neuro the next....lots-o-docs lately. He has. MRI s done for the type of mass he has needs a certain MRI when small. His was so big a cat scan did catch it back when he had surgery. It is all gone it is a blood filled low pressure vessel unlike an AVM but affects can be similar. It leaked so he had several strokes ...when they went in his brain was pushed all the way to the left side.it had been that way with high pressures for a long time. So he has the area directly hurt by the cavernous angioma and the mass effect trauma from the pressure his brain was under for so long. It did return to midline after surgery, and the amount they had to remove was not huge, there is a fluid filled spot on the right frontal/temporal lobe area.

    I have thought of that though. Kind of like the Autism Spectrum Disorders (ASD), I have said, he is very Tourette's like. I am not sure what we would gain from that diagnosis. except maybe people would understand more easily? But lots of Tourette's Syndrome kids are really not treated right either, so is he better off when we say he is just plain old brain injured? Here is a handout I give people who work with him...skip it if too long, I dont think we can do attachments right? on the sheet I hand out, his specific symptoms are highlighted and comments I added are in italics, the formatting seems to be a little goofed here, but you can probably guess from what I have said which things apply.... I will add a star by the ones I have highlighted, ok?

    Last edited: Nov 26, 2011
  12. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Dang. I know a lot about Traumatic Brain Injury (TBI)'s but just reading this makes me ache for him.
  13. buddy

    buddy New Member

    Yeah, me too. OK so, there are some things that he does that are not really covered by the ABI and clearly fall in the on the autism spectrum. He was actually diagnosed PDDnos before they found the angioma. It was not emphasized to me because they honestly felt that it was probably that the psychiatrist thought that not knowing the mass was there and once the mass was found he would recover. (dont we wish). But now it seems it was true, not one person thinks anymore his Autism Spectrum Disorders (ASD) symptoms are really brain injury things, he truly does meet criteria easily for autism, though some things certainly overlap both things....

    And if you read that, you see why I just feel like complicating things by adding a million mental health diagnoses just doesn't make sense, unless it would offer better services, but due to the autism and structural nature of this, putting him with EBD kids (more straight mental health or behavior disordered kids) has not worked. IF it did I would be all for it! It is not anything personal, just that my kid provokes them and they influence him too easily. He is so echolalic and perseverative that it just ends up a nightmare. Some of that has happened just from this hospital experience.

    I certainly have no problem asking them about tourettes, just to see what they say. Do you guys think it would benefit him? I am certainly open if it would.
  14. Steely

    Steely Active Member

    He is so lucky that you adopted him Buddy....you are amazing. Hang in there.
  15. TeDo

    TeDo Guest

    Buddy, my question to you is "Is it going to hurt anything if you just ask about it?".
  16. buddy

    buddy New Member

    I honestly dont know. I suspect not since I really can have just casual conversations with his doctors and they are not going to over-react and write anything down that will jeapordize things. I think like Autism Spectrum Disorders (ASD), Tourette's is fine to have him labeled with since it does describe his behaviors in part. But having worked with kids with Tourette's I have felt there are tons of people who dont really buy they are struggling that much and they dont get the more generalized behavior issues (other than the tics) that often come with Tourette's. Would I be pushed deeper in the "well he understands so he can control it bettr" pond. When I watch people read thru this, they understand how he simply cant retrieve what he "knows" at times. IT is in black and white with contrast on an MRI! I dont know, I get tired, why can't people just get it that if a kid could do better they would. (usually) whatever the reason for it, help them. (I know, oversimplification, but my brain hurts sometimes)

    IN the past here is why I have not pursued the Tourette's things, and I suspect why his docs have not gone there:

    Lasted edited by : Jan 15, 2015
  17. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    buddy, Tourtettes Syndrome is a medical condition, not a mental health issue. Q. may have some issues due to autism, but not everything is because of it. Repeating things over and over again is not autism, not with foul language. I mean they can repeat what they hear, not the way you explained it...it's different...lol. Am I making sense? Yikes, I hope so. And autism doesn't cause seizures...I am thinking that the brain mass must have had some residual effects...

    I'm really not quite sure yet why you are afraid to hear he may have Tourettes? I was under the impression that it CAN be treated so that the tics are under better control. If not, at least Q. will understand his behavior better and perhaps not self-label himself as "bad" or "crazy." Do the doctors feel he had the brain mass when he was born? Was he "typical" as a baby? Do you have that history? I know how complicated it is when they are adopted...the records are not always clear...

    One last thing: Who would you ask about Tourettes? A psychiatrist would not be qualified to diagnose that disorder. That is, if you are going to ask at all...lol. I'm sew confuzzled. I can only imagine how YOU feel :)
  18. buddy

    buddy New Member

    MWM, I am not in any way afraid of Tourettes....that is not it at all. I must not have been clear, sorry. I also did not say it was a mental health issue, just saying that in the past I have said that it is not important to me to add a bunch of diagnosis like other mental health diagnosis. to the mix. The mental health ones in particular have caused issues for us because if the SD focuses on those then he does not get appropriate placement. I was not implying that tourettes was in that. Yes, the seizures are from the brain injury. I was saying that some have asked if his autism symptoms fall under the brain injury too and while some symptoms overlap, many do not...so it is felt that even if he had never had the brain injury he would have still had autism (he has a bio brother with autism too so....). But I am not so sure if he didn't have the brain injury if he would have the Tourette's symptoms. I think those symptoms totally overlap, so my question is simply what difference does it make if the symptoms are accounted for under ABI instead of Tourettes. Will it offer him treatments that I do not know about? If so I would for sure ask more. Though as I said, seems like he would not be diagnosed with that since his medical condition over rides the diagnosis in the dsm.

    So, not resisting it or denying it is tics... I believe it is the same, and I am just honestly asking how it will benefit him to have that diagnosis. The tics are evaluated and accounted for by the brain injury. He doesn't actually meet criteria when I have asked his pediatrician (and now looked it up myself) in the past because though he has the symptoms to meet it, he has the "general medical condition" which accounts for the symptoms....The DSM then says that he can't be diagnosed with it.

    I can see that for some people it may be helpful if I could just say he has Tourette's and then they would be more familiar with what is going on. But, I have also worked with kids who have it and because there is no medical proof of it (like we have the mri showing the brain injury) I have worked with staff who just think the kid is manipulative etc. that already happens to us and he has the surgery reports and images to prove the injury and symptoms.

    So, my question is simply what will it benefit him? I am truly honestly open to it if there is a benefit. We have chosen medications to specifically address tics/impulse control/moods/seizures/aggression/anxiety. Are there specific treatments that are used in tourette's that we could try, that would be wonderful. We are going back to more eeg/biofeedback etc.

    Am I still being confusing? I am not not not against it, just think it is already covered.... but I sure could be wrong....

    by the way, I can ask all of them...and am willing to...the pediatrician (specializes in conditions that affect behavior, adhd, autism, tourettes, etc...) psychiatrist, psychologist, neurologist. Our neurologist takes lead for us.
  19. buddy

    buddy New Member

    so, re reptitions (peserverative langauge/incessant talking) and foul language (on my list of symptoms below...says inappropriate langauge etc...) ....did you read the brain injury stuff I posted? This is all listed under the specific brain injury he has... do you see what I mean.? Technically the brain injury trumps Tourettes. One is not "better" than the other, lol. Just that to get a diagnosis of Tourettes it has to not be caused by medication, drugs, or a general medical condition that can otherwise cause the tics. His symptoms are a result of another medical condition.
  20. InsaneCdn

    InsaneCdn Well-Known Member

    One diagnosis trumping another diagnosis... is an old argument. It keeps on revolving.

    For example... Autism Spectrum Disorders (ASD) is supposed to trump ADHD, Developmental Coordination Disorder (DCD), Sensory Integration Disorder (SID), etc...
    Not every Autism Spectrum Disorders (ASD) kid has all of those.
    So, its becoming a little more common to list specific sub-dxes, with the understanding that the Autism Spectrum Disorders (ASD) overrides the actual diagnosis.
    Because - the sub-dxes actually provide more useful information for places like school.

    Might this tourette's diagnosis vs. Traumatic Brain Injury (TBI) be about the same?