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RE: [CEREBRAL PALSY CLUB] Confused

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  • Curt & Kim
    Hi Debbi, I have twins. They are fraternal and they are boys - 2 1/2 years-old. They were born 13 weeks early and one is PERFECT (Brixon) if not advanced in
    Message 1 of 12 , Apr 12, 2004
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      Hi Debbi,

      I have twins. They are fraternal and they are boys - 2 1/2 years-old. They
      were born 13 weeks early and one is PERFECT (Brixon) if not advanced in ALL
      areas for his age and the other (Jaxon) has a hearing impairment and
      cerebral palsy which translates to wearing glasses, a cochlear implant,
      braces (AFO's), walks with a walker, etc.

      In regards to your question, I can't tell you how many times I got so
      discouraged with Jaxon's lack of progress I could have hurt someone and then
      one day I realize that he is doing some skill that I thought he would NEVER,
      EVER accomplish. It is true...it just takes time. And, you have to
      appreciate the small steps. So many people have asked me if it was hard to
      have Brixon do everything on track when Jaxon wasn't. No, it never really
      was. I never really compared them directly in that way. I have always looked
      at Brixon as SUCH a blessing as he kept us going with all the fun and new
      things he was doing. And then, whenever Jaxon would accomplish something, we
      would have Brixon praise him too. Brixon is just now beginning to understand
      Jaxon's limitations a bit. I am explaining more and more to him about
      Jaxon's Dr. appts. I can now ask him if Jaxon's ears work good like Brixon's
      and he will say "no," but I still don't think he understands that that means
      Jaxon can't hear him.

      It is so hard not to worry for our children. It comes very naturally.
      Taking each day as it comes though and having high expectations for your
      child will get you through it. Sometimes though, nothing works and you have
      to take the time to grieve. Just realize that when you do that, you can get
      right back up and continue on this journey that your daughter is taking you
      on. It's not a journey you signed up for, but neither did she and she is so
      blessed to have her family accompany her on this journey. Appreciate the
      small accomplishments because they will accumulate. Allow her to develop
      her own characteristics and special ways. She is also blessed to have a big
      brother that undoubtedly will be by her side always.

      Take care and know that you are in many people's thoughts and prayers.

      Sincerely,

      Kim (Jaxon and Brixon's mom)
      -----Original Message-----
      From: punkindebbi [mailto:punkindebbi@...]
      Sent: Sunday, April 11, 2004 9:58 PM
      To: cerebralpalsyclub@yahoogroups.com
      Subject: [CEREBRAL PALSY CLUB] Confused


      Thanks to those who wrote about the speech issue that I brought up.
      I just am very confused. I feel just frustrated that I have all of
      these questions about my daughter, and all of the docs say that we
      have to wait and see, that it is just too early to know. She just
      turned two and all they can tell me is that she has low tone cp. We
      don't know what type of cp, we don't know when or if she will walk
      independently, talk, potty train, what type of school she will go to,
      what the quality of her life will be, if she will go to college, and
      the list goes on and on. I just don't know what her life will be
      like and that is very hard for me. My son is four and he is so
      healthy and active and has done everything early, inclulding walking
      at 7 1/2 months, and we never had any of this fear for his life, or
      all of these unanswered questions. Do any of you have these
      feelings? How do you handle this? It is just so different having a
      healthy child and one who has special needs.

      Anyway, I hope that you all are feeling better than I am right now!

      Debbi,
      Mommy to Caleb 4, and Gracie 2



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    • Debra Marasco-McNulty
      You may want to contact United Cerebral Palsy s (UCP) corporate office. Steve Bennett has been director for 1 year now and has great connections to sources of
      Message 2 of 12 , Apr 12, 2004
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        You may want to contact United Cerebral Palsy's (UCP)
        corporate office. Steve Bennett has been director for
        1 year now and has great connections to sources of
        information. Also through some UCPs you may qualify
        for scholarship money for the purchase of equipement
        etc.

        You have a great/needed plan. I do arts & crafts with
        disabled teens and adults who come to my house for
        extended care. Schools and adult programs close 2:30
        to 3:30 and in our area there is a lack of "childcare"
        for this age group so parents can work.

        Debra Marasco-McNulty, UCP board member in San Luis
        Obispo, CA


        --- Shannon Tinsley <enlighten_me18@...> wrote:
        > Hello Debra and all;
        >
        > I too am the parent of an 8yr old little girl with
        > spastistic cerebral palsy who doesn't walk and has
        > several delays. She is bright and very energetic and
        > likes to try to do the normal things on her ie:
        > brushing her teeth, wiping herself after going to
        > the bathroom and dressing. However, these simple
        > things are very difficult for Jordan and I assist
        > her asmuch as possible.
        >
        > I live in the Westchester County in the state of New
        > York and I'm in the process of creating some sort of
        > recreational activities for children with physical
        > disabilities bringing them Arts & Crafts, Music from
        > noted celebrites and all sorts of things.
        >
        > I ask anyone who knows anything about setting up a
        > Non-Profit organization for assistance in my goals.
        >
        > Debra, just hold on because when the Dr.'s say no
        > your child can still say yes. It will take some time
        > and patience and don't accept the first opinion
        > about your child, dig deeper until you can't dig
        > anymore.
        >
        > Shannon Tinsley parent of Jordan
        >
        > Debra Marasco-McNulty <debraphp@...> wrote:
        > Special children have a way of anchoring us in the
        > present and learn to take day by day. But as you,
        > there is a constant grieving of the "loss" of the
        > "normal" child and the loving of the beautiful
        > angel.
        > My older son was active, healthy, walked at 9 mos,
        > potty trained at 20 mos, etc. I did the common
        > thing
        > of comparing the boys development. Now I just try
        > to
        > treat Jason as normal as possible.
        >
        > Yes, alot of frustration, but many challenges and
        > opportunities.
        >
        > Look up "chronic sorrow", "sensory integration" and
        > "oral motor therapy" as starting points.
        >
        > Debra
        > --- punkindebbi <punkindebbi@...> wrote:
        > > Thanks to those who wrote about the speech issue
        > > that I brought up.
        > > I just am very confused. I feel just frustrated
        > > that I have all of
        > > these questions about my daughter, and all of the
        > > docs say that we
        > > have to wait and see, that it is just too early to
        > > know. She just
        > > turned two and all they can tell me is that she
        > has
        > > low tone cp. We
        > > don't know what type of cp, we don't know when or
        > if
        > > she will walk
        > > independently, talk, potty train, what type of
        > > school she will go to,
        > > what the quality of her life will be, if she will
        > go
        > > to college, and
        > > the list goes on and on. I just don't know what
        > her
        > > life will be
        > > like and that is very hard for me. My son is four
        > > and he is so
        > > healthy and active and has done everything early,
        > > inclulding walking
        > > at 7 1/2 months, and we never had any of this fear
        > > for his life, or
        > > all of these unanswered questions. Do any of you
        > > have these
        > > feelings? How do you handle this? It is just so
        > > different having a
        > > healthy child and one who has special needs.
        > >
        > > Anyway, I hope that you all are feeling better
        > than
        > > I am right now!
        > >
        > > Debbi,
        > > Mommy to Caleb 4, and Gracie 2
        > >
        > >
        >
        >
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