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3610Re: Parenting and Discipline for child with global delays... pls help

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  • gr8fultogod
    Jun 1, 2006
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      Dear Alma,

      My son is so similar to your daughter....he is 2, has ataxic CP, and
      wants constant help to move about. Our PT has stressed that we need
      to teach him to "be happy" on his own, but it's easier said than done!
      My first thought after reading your post is compassion for you and
      all the other parents on this site who nurture a special needs child.
      It can be very stressful, and it is SOOOO important to try to find
      some nurture time for yourself. I don't think the human body was
      designed to handle this much stress.

      For the first two years of Phillip's life I was so stressed out that I
      was almost over the edge....I woke up thinking about him, cared for
      him all day long, went to sleep thinking about him, got up in the
      middle of the night to do internet research, handled all his doctor
      appointments, therapy sessions, struggled with feeding him and trying
      to get weight onto his skinny body....fought with doctors who advised
      things I didn't agree with, tried to educate the rest of my family so
      they would take his needs seriously, etc..... I became depressed and
      was constantly worried.

      In December I was diagnosed with Stage III ovarian cancer, and my
      outlook changed. I still have to care for Phillip's needs, but I have
      realized that worry accomplishes no good thing, and stressing out over
      my child will do more harm for him (and for me). I want to encourage
      you to hang in there--it sounds like your daughter is progressing, and
      I have a feeling things will get easier for you over time. Try to
      find a playgroup. I joined the MOMS Club (there are many chapters all
      over the US). These moms not only didn't care that Phillip has
      special needs, they welcomed us into their group and have provided us
      with meals now that I'm going through chemo.

      I know you cannot afford a full-time nanny (we had to get help when I
      was recuperating from two major surgeries and now that I'm in chemo
      and flat on my back after each session--my in-laws are helping
      financially with that). Is there any way you could afford someone for
      a few hours a week?? Perhaps a high school student during the summer
      months or after school... Getting a chance to have some grown-up time
      is important, but not only that, I think our children need to have
      time away from us....it helps them learn to cope on their own (Phillip
      is SUCH a mama's boy anyway...). My husband also has a very demanding
      job, but he manages to take care of Phillip one or two evenings a
      month so I can go out (sometimes all by myself!)

      God bless you and all the other parents of CP kids....

      Hugs,
      Mary



      --- In cerebralpalsyclub@yahoogroups.com, "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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