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3613Re: [CEREBRAL PALSY CLUB] Parenting and Discipline for child with global delays... pls help

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  • staci
    Jun 1, 2006
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      Hey Alma,
      I know how you feel about needing a break. My son was just like your daughter when he was a baby he could never be layed down he would wake up immediately and start crying. I also had no one to really help me. I hope someone on here has some ideas for you. I would say mothers day out programs that some churches have but I'm not sure if you feel comfortable with that.
      Some typical children are very clingy too. My daughter is and was breastfed and still is so attached to me like an infant. She always needs me to confort her to sleep and wakes up several times at night. If shes sick I am just like you are with your daughter she won't let me put her down.
      I think that my son Hunter who has Cp has gotten better with age and since he started preschool he is a lot more independent.
      You daughter's speech sounds really good to me. When my son was that age he would say whats that? all the time.

      One thing is for sure we all need a break sometimes. I have been really stressed out myself lately. I hope we get more ideas.
      Staci
      BRIDGET NICHOLS <bridget.1@...> wrote:
      Hello Alma!

      My son, Preston, will be 3 in August. He's been diagnosed with Hypotonic Cerebral Palsy, Seizures, and suspected to have CVI. He used to have acid reflux and was on a feeding tube for 3 months when he was around 7 months old. He's currently receiving PT, OT, OM, VI, SP services every week. He doesn't talk yet and doesn't chew his food very well, but he can sit, crawl, and he can stand if he's leaning on something or if we hold his hands for balance. He can take steps if he hold his hands for balance.

      I have 3 things that I can place Preston in to keep him upright and active when I need to clean or take a break. I have an Exersaucer, Jumperoo, and an infant walker that I can place him in to keep him busy and interested. He's getting too big for them but as long as he can fit and can hold him, I'll use them. He's 37" tall and 35 pounds (a big boy). Maybe those kinds of toys would work for your daughter as well?

      Just an idea!

      Bridget Nichols
      www.prestonslife.com

      oo.com> 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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