Were you surprised by your difficult child's CGAF score?

Discussion in 'General Parenting' started by totoro, Oct 30, 2009.

  1. totoro

    totoro Mom? What's a GFG?

    Linda's post about KT got me thinking about the K's first CGAF score and how it has dropped and how it made me cry the first time it was explained to me.
    (Children's Global Assessment Score)
    I think her first one was 53 or so?
    It has dropped to 50-41 range, I can't remember what her exact number is offhand.

    But the fact that she has continued to drop makes me kind of sad, but I also try to keep in my mind that she still has many years ahead of her..

    I have also spent a lot of time keeping in the back of my mind that she may always need my help. She is severely mentally ill and she may prosper and she may thrive in her growth.
    She may not.
    I will continue to have those moments that take my breath away with the hurt and sadness of our kids reality.
    But then the feelings of OK get over it and keep going.... that sad fact that this our job. :(
    Hanging onto the little rewards and the little triumphs!
    The fact that she was able to write 2 sentences in school neatly! It took an hour, but hey she did it.:D
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    T...I think these scores can really make you stop in your tracks if you think about them. I dont remember ever actually seeing them for Cory. I have seen them more for me...obviously. I actually think there are times I am worse than they give me credit for...lol. I live in the 40s. I dont think I will ever get out of it. Even with all the help and interventions, I am just not capable of rising above that but my life is ok. As long as I have my family around me...I do ok. What is completely unreal is that if something happened to Tony I would probably have to have Cory step in for him. Cory gets me much more than anyone else.
  3. GoingNorth

    GoingNorth Crazy Cat Lady

    When husband was still alive, my GAF ran around 65. He was my support and he handled stuff I couldn't.

    When I was awarded SSDI, my GAF came back at 48 from the SSDI psychiatrist, and 52 from MY psychiatrist.

    I don't have any supports in place. I have my mother and sister and a dear friend, but that is about it.

    I manage. Being medicated is a lot of it. I don't have the type of life I'd like to have, but I have had to accept some limitations and fight others. I think it's the same with any disabled person.

    I don't want to think about what my GAF was the first three years after husband died. I could barely take care of myself. Couldn't hold down a job.

    Bipolar is a b-tch of a disease and I wouldn't wish it on anyone. One good thing that came out of all the SSDI stuff is that my family has accepted that I am ill, and that I'm not some sort of horrible person like the bipolar people who make the news.

    I'm not violent. My BiPolar (BP) manifests mostly as horrible depression and hypomania. My 'support team' will pick up on the hypomania instantly if I am talking on the phone with them, and promptly ask if I'd had my medications checked recently.
  4. rlsnights

    rlsnights New Member

    CGAF scores are very subjective and not very reliable measures of functioning for the most part. They are most helpful when given by the same professional on the same person over a lengthy period of time. Even then their near universal use is because insurance companies are fond of them.

    Numbers, we love numbers, give us numbers...we don't care if the numbers don't measure anything meaningful or that you can have 10 psychiatrists assess the same person and you'll get 10 different CGAF's, assuming the person is not catatonic.

    That's not to dismiss your sadness or the accuracy of your perceptions about your child's well-being. It's just that picking a number between 1 and 100 to label a person's ability to function in daily life is really in the eye of the beholder based on that snapshot moment of interaction.

    Like the labels we use for mental illness, they are only somewhat meaningful and helpful. Mostly labels serve as a general shorthand between professionals. But it's rather like you and I talking over the phone and we each say something is round. OK, but what do we each mean by that? Is it round like a plate or an egg or a hula hoop or a ball? Is it bright yellow or grey with red stripes? We will have to go into a lot more detail before we know what we each mean when we say something is round.

    Same deal with MI labels and CGAF. It may help distinguish between round and square but it might not be as helpful when you're comparing a square to a rectangle to a triangle.

    All of which is to say, trust your mom instincts before you trust a bunch of numbers in my humble opinion.

    I don't need a set of unreliable numbers to evoke my sadness, fear and grief over the challenges my child faces. It's very hard to look past that and focus on the ways my children are overcoming their challenges. But every day they are making progress somewhere in some way. The victories may be big and life-altering or they may be small and short-lived.

    Either way I try to savor my children and their victories and I do my best to make sure my kids know I am proud of them. I know you do that too.

    I think we have to try to live in the moment and not give up hope. Sorry I'm a bit down myself today. Think I'm writing more for me than for you. :)
  5. Fran

    Fran Former Site Owner

    Totoro, I wrote this in 2002 when I was starting to realize that my son wasn't going to grow out of this and that he may need supervision all of his life. It was a shock but not a shock. No one said that to us but I tried to see his behavior and the natural progression would be. It wasn't optimisitic.

    I know how you feel.

  6. crazymama30

    crazymama30 Active Member

    I have never seen difficult child's nor husband's gaf scores, nor do I EVER want to. I think it would send to a place I don't want to be.

    Part of me is curious, but part of me is not. Stuff like that really gets to me. When husband's psychiatrist filled out my fmla paperwork his description of husband's symptoms was very hard to take.
  7. totoro

    totoro Mom? What's a GFG?

    Fran thank you for sharing your writing.
    I had to shield the tears from the girls.
    I honestly don't know how she will do throughout her life. But I do love that girl, I love her with more than my heart and soul.
    I sat and stared at her the other day, as she paced non-stop through the house... it hurt so bad because I just wanted to hold her and make it stop for her.

    I know all of this is a number and it means nothing, I know what I see and feel is the most important thing to me and her.
    What I hate though is some days I just want to run away... just that flash, for a moment, you wonder...
    Because I know I am in this for the rest of my life.
  8. Fran

    Fran Former Site Owner

    I can tell you that fear of the unknown back then was worse than living with the known behaviors now. I gauged it pretty accurately.
  9. timer lady

    timer lady Queen of Hearts

    Toto, I wasn't surprised initially ~ the recent scores did though. Like you, I sit & wonder - hope that the hurts can be healed. The BiPolar (BP) medications are as good as it gets right now, it's the emotional disorders that are holding my tweedles back. The Reactive Attachment Disorder (RAD) & PTSD.

    I know your fears; your awesome love for your difficult child as you sit back in tears. Our babies take us to our knees and we use our "mama bear" strength to get back up & keep going.

    One day at a time.