Kind of new here

Discussion in 'General Parenting' started by tammyjh, Dec 17, 2007.

  1. tammyjh

    tammyjh New Member

    I've posted before in the past but have trouble sticking with posting.

    I'm Tammy and my difficult child is my oldest daughter, Abigail who is 14. When she was a baby, she had a seizure disorder that didn't respond to medications so she had a surgery in which the two halves of her brain were disconnected from each other and a lot of her right hemisphere was removed (temporal lobe, and quite a bit of her parietal and frontal lobes). On the whole, she does fairly well but due to surgery, she has a lot of symptoms similar to Asperger's and ADHD. She's very immature but articulates very well so she seems to function on a higher level than what she actually does. She has a full scale IQ of 72 with the verbal being higher than the performance. The predominant problem is and always has been the mood. In the last year, she's had 3 hospital being a developmental disorder unit and the mood keeps deteriorating. Her hospital stays were due to depression and she was caught trying to cut herself with scissors on the bus last year. It seems the depression is under control but her irritibility is not. We've always known that it would probably escalate to physical aggression, which it has. Her frustration tolerance is very low and she can become irate over what most people consider little things. Getting her to take a shower can be an all out battle. Things that are non negotiables are the hardest. She cannot stay home alone because she tried to run away from home one day last year and continues to threaten to try. We live in Maine and her dad lives in PA....she was going to walk to PA....and she actually believed it was doable. We've had crisis involved some and we've seen lots of dr.'s/specialists/psychiatrists/psychologists/counselors, etc..over the years. We've recently had her working with therapists at neuro rehab but thats not proving to help with much more than the PT and Occupational Therapist (OT) that she recieved at school. The ST was going to work with her on understand nonverbal communication skills and thats needed too but the biggest issue is the mood and no one seems to really want to dig in to that one. She's one that acts one way at home and another at appts. so its really hard for people to understand that we are not exaggerating when we discuss her behavior. Another thing thats hard for others to get is that she "wants" to go to the hospital and once she gets there, she's happy. So, being happy at the hospital means she's stable(to them)so they want to discharge her asap.
    Anyway, its getting long and I'm sure confusing so I'll stop here for now. The bottom line is that I have a child who has little control over her moods and litte control over what she does when she's in her moods. We keep hearing how she's been given more coping skills but the problem isn't in the coping skills, its in her ability to access them and actually use them when she needs to....she can't. So, thats all for now. Thanks if you've gotten to the bottom of this and understood any of
  2. smallworld

    smallworld Moderator

    Tammy, welcome! I'm glad you found us.

    One thing you should be aware of is that irritability in children is often a symptom of depression. So her depression may not actually be under control.

    Is Abigail on any medications? If so, what and are they making things better, worse or about the same?

    If you haven't read The Explosive Child by Ross Greene, you might want to get your hands on a copy. It's helped many of us parent our extra-challenging children.

    Again, welcome.
  3. DDD

    DDD Well-Known Member

    I'm afraid I can't be of much help but reading your description of your daughter's issues "rings" very much like the information
    sites that I access trying to understand the repercussions of our
    boys Traumatic Brain Injury (TBI). Obviously, there is a common bond of brain surgery.

    I don't know if it would be of any help to you but there are message boards for "caregivers" of Traumatic Brain Injury (TBI) patients as well as many
    resource sites that attempt to humanize the deficits that do result from brain injury. There are frequent references to temper tantrums, depression, inconsistent effort etc. etc.

    My personal knowledge is growing and, frankly, it is alarming.
    In part, at least, I can grasp your frustration and concern. I
    am basically an optimistic person but with brain injury I think
    I have already tempered that tendency. Hugs. DDD
  4. tammyjh

    tammyjh New Member

    Thanks for the welcomes.

    Yes, I have read The Explosive Child. In fact, we have his old book, the revised book, the book "Treating Explosive Kids" by Dr. Greene and Stuart Ablon, and their dvd called "Parenting the Explosive Child". The one hospital where she was an inpatient in for a short time uses The Collaborative Problem Solving Approach. It wasn't an approach that worked well with daughter but my other kids are pretty good with it lol. Abby is super concrete and is not able to negotiate when she's in her mood. Her moods switch so fast that its not possible to catch her before she's flipped out to try to talk her down.

    And yes, we've been reading a lot about brain injury and I did visit a caregiver board a few times. I say "we" because husband does a lot of reading and is very involved. We know that a certain amount of rewiring has gone on which is a great accomplishment but some areas are still lacking. Her empathy is extremly low and she has no desire to really be a part of the family. I've always been ok with the fact that she likes her computer or her barbies better than me because she's not that way out of spite, its because of whats missing. Not that she's older, the worry in that area is that she's become physically aggressive if she doesn't get her way and where she lacks empathy, she doesn't care if she hurts anyone or not.

    She has been tried on quite a few different medications. with very little results. She is currently on prozac, which was started in a different hospital while she was on their developmental disorders unit for 6 months. There was a definite change in her depression or the level of depression that we had seen here but the question the change because she is on prozac or because she was out of the house. It has been theorized that it may be too overstimulating emotionally for her here because she doesn't really understand or want to understand the social dynamics of the family. We have an appointment. tomorrow with her psychiatrist to discuss other medication options. We have a pretty good case manager who will be there tomorrow and we've been going through the SLOW process of getting in home supports....still in the meetings phase.
  5. DDD

    DDD Well-Known Member

    I wish you well. Hugs. DDD
  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    glad you have found your back.

    I hope, with both the psychiatrist and the case manager, that the meeting tomorrow is positive and some solid plans are laid for difficult child.

  7. Big Bad Kitty

    Big Bad Kitty lolcat

    Hi Tammy, glad you wandered back.

    We may not have an answer for you. But this is a safe place to land. This board is full of warm, caring wonderful women (and men!) who do not judge, but lend and ear and a shoulder.

    Hope you stick around! Hugs your way.
  8. Star*

    Star* call 911

    Hi and Welcome,

    Since you like to read, I have an excellent suggestion. It's called Mapping, by Wilton Hellams, Ph.d - it talks about the thing you are going through with your daughter and her re-wiring the brain and how it's achieved and how our brains think. I really believe it would be a benefit to you - you can go through Amazon here to order it - (it helps the site)

    Do you suppose that Abigail does so well in an institutional setting because of the level of structure there? Maybe she's not articulating to you that "feels good = structure" which - trust me we tried with my son, at home and can not ever achieve a level of structure that would be a comfort to him. People like that do well in the military as well.

    Yes, I can see a 14 year old thinking walking to PA was a doable thing. Mine was going to walk to FL from SC when he was 12. I threw his suitcase out on the front lawn and told him to GO FOR IT. I understand in your case you can't - but for me it was sure funny to see difficult child sit at the end of the lane and think. Everything I could pack into that suitcase went in - while he was yelling "GOOD, you forgot my socks or just don't care if I have socks." I thought "You needs socks - you'll get socks every last pair in your drawer." He came back about 2 hours later. It wasn't the last time I'd throw his stuff out in the suitcase on the lawn - I got pretty good at tossing that bugger. Later on I used trash bags - he could buy MY suitcase if he needed. lol

    Do you get any kind of respite? Does her biodad in PA - help or hinder?

    Sounds like you really have your hands full.

    Come back often - you may not find specific info you need here because of your unique situation with Abigail, but you never know - you may post and someone else may say HEY ME TOO. Never know - the nicest people I've met are from here.

  9. ML

    ML Guest

    Welcome Tammy!
  10. tammyjh

    tammyjh New Member

    I will have to check that book out..thanks for the suggestion.

    Her dad doesn't help or hinder. He pays his support but doesn't want to be involved other than that. She used to visit a couple times a year but in the last year or so, his interest in dealing with her and her issues for even a short period of time has dwindled.

    We don't have respite at this time but will be filling out the paperwork soon. I talked to our case manager just last week about this because there aren't too many family members willing to sit with her anymore.

    Yes, I know she liked the structure at the hospital although by the end of her 6 month stay, she was tired of it and just about as hard for them to deal with as she was for us. We often refer to it as a cookie dispenser analogy. Abby views people like cookie dispensers. When you are dispensing the right kind of cookies, she's very happy. When you run out of cookies, she then looks for another dispenser. By the end of her stay, all the cookie dispensers on her unit were empty(in her view).