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3608Re: [CEREBRAL PALSY CLUB] Parenting and Discipline for child with global delays... pls help

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  • ana ilano
    Jun 1, 2006
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      hi alma, i know what you mean, i can relate. I have a 6 year old spastic daughter, we do everything for her. She still cannot eat solid foods so we're giving her pediasure and oatmeal. She still cannot sit, cannot walk, can't even say a word.....but we know that she understands us coz when its bath time, she makes a move that we understand and when i say its time for her to pass motion, she will. Unlike your daughter who loves to go out always, mine is not......she doesn't like the mall especially...she doesn't like noisy sounds except for her favorite music. I have 2 kids, teh youngest is normal....when she cries, the youngest sings her amazing grace or calls me and tells me that her sister is crying. She now weighs 20KG....she has this big stroller a mountain buggy.....wherever we go....it has be with us. She used to have a PT, OT before when we were still in singapore but when were expatriated here in china......all of it stop. I too sometimes get upset coz she
      sleeps very early at night and wakes up at 1am.....crying and she stops after maybe an hour. I don't get enough sleep anymore but my fighting spirit is still okay. But sometimes, we're only human, we get tired but after a while...were back on track.. Have patience, its nice to hear that ur daughter can say words that u can understand and she can walk.




      ALMA <liliocat@...> wrote:
      Thank goodness for the recent posts of parenting and discipline for
      children with global delays. I knew that I was not alone, but to see
      it as a recent subject just reassured me that I am not losing it alone.

      I have a 24 month old dtr that was 3 months premature. She was born
      at 27 weeks old and had a rough 3.5 months in the NICU. Alana had
      battled NEC, 2 kidney failures, sepsis, and multiple arrests in the
      NICU, plus extensive respiratory distress. She is our miracle child!
      Her "scars" of prematurity resulted in IVH 3, mild PVL, at least
      moderate CP, global delays, FTT, CVI.

      Because of Alana's limited mobility (not crawling, rolling over,
      sitting, walking yet without moderate assistance), I am either
      carrying her 80% of the time, or she is in her high chair or sitting
      chair. She babbles a lot and we can understand a few
      verbalizations/phrases from her. Alana can express if she likes her
      food by saying, "Mmm...it's good." Or, "I like that." When the phone
      rings, she seems to say, "Who is that?" She can say Dada and Ma/mama.
      I think she can understand no to some degree because she reacts by
      fussing and or she will give me a sad frown that will result in a cry.
      If I ask her if she wants to take a bath, change her diaper, swing,
      or go walk-walk, she will grunt "awh." If she does not understand or
      want to do what I ask her, she will grunt "uh-huk."

      Here is my problem: It seems like Alana needs constant attention.
      Either carrying, holding, singing, talking, and or animating. I am
      not exaggerating when I say that I am a walking and carrying show from
      the time she is fully awake in the morning until 12:30 a.m. when she
      sleeps. I am the primary caregiver. She has FTT and is so particular
      when she feeds that I am the only one who can feed her effectively
      with the bottle. She does eat jar food and whatever table tidbit she
      can swallow. She weighs around 18 pounds and is over 30 inches long.
      She does not have a g tube.

      If I do not entertain her, she will probably fuss or cry for hours. I
      cannot afford for her to do this for long because she will burn energy
      that she needs or throw up her food in her tummy. When she gets
      upset, she will cry, gag, and then cough out her stomach contents. It
      is becoming hard to settle her down.

      I feel like I have to bring her EVERYWHERE I go. I do not have any
      breaks even while she naps because I have to hold her upright due to
      her reflux after bottle feeding.

      Am I alone with the aforementioned situation?

      I have coped so far by just trying to keep her in a good mood or to
      have numb ears. However, being the sole caregiver it becomes
      challenging even more and I have moments when I am pulling my hair
      out. My dh helps ocassionally and has a demanding job. My parents
      are old and are dealing with my grandmother who had a major stroke.
      We cannot afford a nanny or skilled child care. I have not worked in
      over a year.

      Any tips?

      What about long-term? I worry that she will require high attention
      and that no one else can give her necessary attention when she is
      older or when I am gone in every aspect. Are there parents with older
      children who went through this? How can you prepare me/one for the
      worse case scenario with a child with global delays. I call myself
      optimistic, faithful and positive, while my dh and some medical staff
      could call me stubborn or unrealistic when it comes to my only dtr.

      I have no other children. No strong support system. I know I am not
      taking good care of myself either. My dh thinks that my known
      extremely patient self is changing and that I have a short temper with
      him. My response is that I do not like to fret or spend energy on
      things or people that give me uncalled or unnecessary stress, as I am
      trying to focus on my dtr.

      Any suggestions or advice here?

      Alana has PT and OT twice a week each, plus vision therapy. I have
      not found a play group or support group in my neighborhood that is
      convenient or appropriate for our situation.

      I appreciate any help.

      Thank you,
      Alma






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