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Re: [CEREBRAL PALSY CLUB] DNR

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  • Faustina H Ortiz
    Hi Em, I am sorry to hear about all the stuff you go through. You must know how I feel at times. I sometimes feel useless. I want so much for my daughter to
    Message 1 of 8 , Apr 1, 2005
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      Hi Em,
      I am sorry to hear about all the stuff you go through. You must know how I feel at times. I sometimes feel useless. I want so much for my daughter to walk and talk like any normal child. She gets very frustated(because she can't do much) she has started biting her hands. They have calases on them. What can I do about that? I do have pictures of her and her father in her room. They just shared a very special bond that I will never be able to replace. There are times that she will lay in bed and stare at the door around 10:00p.m. (that was the time her dad would get out of work) waiting for her dad. Sometimes she just cries because she misses him. I feel so bad for her but yet I know what she is going threw. I miss my daddy too. My daughter's name is Abigail Magdalena. She is 8yrs old. She is the most beautiful little girl you have ever seen. Inside and out. Thank you for listening and for answering my questions.
      Your friend
      Tina

      Em <emilygroups@...> wrote:
      Hi Tina,
      I do get quite attached to the kids i work with, especially those i do
      respite work with. I always get very sad when a child passes away, i
      especially feel for the parents and siblings. I often spend time with
      siblings after the child I work with has died, it gives the parents
      time to grieve and the siblings someone to talk to, often the parents
      don't have the time or know what to do/say to their children. I don't
      think I could do this work if i didn't get attached to the children,
      they are all beautiful.
      I actually find it easier to accept when the child has been sick and
      suffering and they finally pass away, they are at peace and don't have
      to suffer anymore. It is harder when the death is unexpected or
      dragged on.
      I have only ever got upset by two children i work with (i still work
      with both). One girl is the same age as me and has profound CP and no
      intellectual disability. She has no control of her body, very minimal
      control of her head. She has so much to say but cannot talk. She has
      her arms and legs strapped to her chair (by choice, otherwise they fly
      around and get her upset). One arm has yes on it and the other no. She
      uses these well but it is hard. I always felt sorry for her because
      she is trapped in her body, she wants to do so much but can't. The
      second is a boy who also has severe CP and no ID. He has a baclofin
      implant which has helped so much, he still struggles to control his
      legs and has a little control over his arms. He is trying really hard
      to relax his arms and legs. He is also unable to speak although is now
      saying, mum, dad, sauce and tooth (for tooth brush) semi-clearly. I
      just find it really frustrating and sad that i can't do something to
      help these two children (the girl's CP is actually caused by CMV the
      same as our girl, Trini is lucky!) Camps are challenging with these
      two, although the boy has gone in the flying fox the past 3 years
      being held by a leader. Showering and lifting is difficult without the
      proper facilities and volunteer leaders often struggle to communicate
      and work with them for long. I often spend most of the weeks with them
      (different camps luckily). I love working with them but it often gets
      upsetting at night when they are in bed and you think about what they
      are missing out on.
      I don't know how much your daughter understands or communicates? Maybe
      you can just explain to her that their was an accident and daddy has
      gone to heaven? When my uncle passed away (he had a brain haemorage)
      his granddaughter was only 2. She was told that grandpa had died, he
      was gone and now was in heaven. They pointed out a bright star in the
      sky and told her it was him. Now she's 5 and goes outside some nights
      and looks and the sky and sings twinle twinle little star (it still
      makes everyone cry) but seems to make her happy. Do you have a photo
      of your daughter and husband that she could have in her room or
      something that is just for her so she doesn't forget him?
      I just realised i don't know your daughter's name or age?

      Emily


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    • Em
      I used to work with a girl who has CP and an ID, she lost her father in an accident. She used to see a child psychologist, she didn t speak but could
      Message 2 of 8 , Apr 1, 2005
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        I used to work with a girl who has CP and an ID, she lost her father
        in an accident. She used to see a child psychologist, she didn't speak
        but could understand things when put simply and nod or shake her head.
        She really seemed to make some progress. I think just having the
        opportunity for some time out with someone who understood and knew
        what to ask helped her emormously. It must be very hard for you and
        her.
        I don't think there is a time when any parent or carer of a child with
        a disability doesn't wish that their child could just do this or that
        like any other child. I know that on camps we often get the chance to
        help the kids do things that they wouldn't normally get to do. The
        smile on the faces on the children when they get to go on the flying
        fox (don't worry they sit on a leaders lap and strap them both in),
        bounce on trampolines, some have been down water slides, jumping
        castles, and more.
        If she bites her hands only out of frustration can you physically stop
        her and try to work out what is wrong? Will she calm down if she knows
        that you understand? even if you can't do anything about it.
        What sort of school does Abigail attend? Do they work on communication?
        If you don't mind me asking, do you get any respite?
        I love the name Abigail, very beautiful, it sounds like it suits her.
        Emily
      • Faustina H Ortiz
        My daughter has some communication skills but not much. I have asked for some type of therapy to help her deal with the loss of her father. But all anyone
        Message 3 of 8 , Apr 1, 2005
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          My daughter has some communication skills but not much. I have asked for some type of therapy to help her deal with the loss of her father. But all anyone tells me is that she can't possibly know what is going on. I know that they are wrong. She knows and understands more than anyone gives her credit for. I am considering sending her to camp for the first time. No I don't get any respite for her. I have been the one taking care of her all her life. I want nothing but the best for her. She is my hero. She has taught me not to take things for granted. Abigail has also taught me how to never give up. Though it seems as though she is constantly fighting to overcome her disability, she always has a smile on her face. She is my little angel. Everyday I look into her eyes I see my husband all over again. She is so much like him. I hold her as much as I can and try to explain to her that though her dad isn't her physicaly he will always be in her heart. It just hurts me when she wakes up in
          the middle of the night crying for her daddy. I put on the song he dedicated to her(chiquitita by Aba) and it seems to calm her down and put her to sleep. Thanks for listening to me. Thank you for all the advice and kind words you have given me.
          Tina

          Em <emilygroups@...> wrote:
          I used to work with a girl who has CP and an ID, she lost her father
          in an accident. She used to see a child psychologist, she didn't speak
          but could understand things when put simply and nod or shake her head.
          She really seemed to make some progress. I think just having the
          opportunity for some time out with someone who understood and knew
          what to ask helped her emormously. It must be very hard for you and
          her.
          I don't think there is a time when any parent or carer of a child with
          a disability doesn't wish that their child could just do this or that
          like any other child. I know that on camps we often get the chance to
          help the kids do things that they wouldn't normally get to do. The
          smile on the faces on the children when they get to go on the flying
          fox (don't worry they sit on a leaders lap and strap them both in),
          bounce on trampolines, some have been down water slides, jumping
          castles, and more.
          If she bites her hands only out of frustration can you physically stop
          her and try to work out what is wrong? Will she calm down if she knows
          that you understand? even if you can't do anything about it.
          What sort of school does Abigail attend? Do they work on communication?
          If you don't mind me asking, do you get any respite?
          I love the name Abigail, very beautiful, it sounds like it suits her.
          Emily


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          http://groups.yahoo.com/group/cerebralpalsyclub/

          To unsubscribe from this group, send an email to:
          cerebralpalsyclub-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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        • Em
          I really feel for you and Abigail. You know your daughter better than anyone (and spend all the time with her). In Australia you only need a referral to see a
          Message 4 of 8 , Apr 1, 2005
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            I really feel for you and Abigail. You know your daughter better than
            anyone (and spend all the time with her). In Australia you only need a
            referral to see a psychologist or psychiatrist, not a counseller.
            Could you find a good counseller that is willing to give it a go?
            Maybe it's different where you are?
            Camps are great fun. Again, they're going to be different in different
            places. My friends have worked on Camp USA for a year and loved it.
            They usually do try to make it fun for the child and you would have a
            break, probably not the first time, you'll worry but when you see how
            happy she is you won't even remember being worried.
            It's great that you have the song to play for her, i bet she is lying
            there thinking about her dad as she goes to sleep. It must be really
            hard for you.
            Emily
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