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RE: [CEREBRAL PALSY CLUB] When Question arise

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  • **Buddy**
    Lisa: As a child. and as an adult, there werre people who asked me questions about my disability. In most cases, it was easy to tell people about what it was
    Message 1 of 6 , Aug 22, 2004
      Lisa:

      As a child. and as an adult, there werre people who asked me questions about
      my disability. In most cases, it was easy to tell people about what it was
      that I had. It took me a few years to be able to really understand what CP
      was, and I think my mom did a good job explaining it to me. Most times,
      there are adults that understand what CP is, and 75% of the time, its the
      3-5 year olds that wonder when they see me walk by them. They say "Mommy,
      what happened to his legs" or "why does he use those." (referring to my
      crutches)

      When this happens, I will sometimes hear parents act as if their child asked
      a "forbidden" or "off limits" question. They sigh, and act as if it was an
      embarrassment to them. What I do is to come right down to thier level (Im
      over 6' tall) so they can feel more comfortable tallking to me. I look them
      right in the eye, and I say something that is age appropriate.....Such as:

      "These crutches help me to walk and support me. Your legs help you to walk
      and support you, and that is what my crutches do for me.......what happened
      is that in my head, there are signals that go from your brain to your legs,
      and in my case, the part of the brain that deals with the signals to my legs
      is not functioning as it would be for you. I can walk, I just can't walk
      as well as you can, but that doesn't stop me."

      I tell the parents that I would much rather have a child or an adult ask me
      about my disability, rather then to assume the worst. There is nothing to
      be asamed of about having a disability, and those that don't ASK will not
      learn about a diabled child. (or adult)

      Austin and his twin may not ask about his disability because it may not be
      an issue for him or his twin. They may think that having a special brother
      is cool, or that Austin is special, and they deal with it on their own
      levels. Children are inquisitive, and they WILL ASK about a disability, but
      they should not be afraid of the fact that a special needs child is gonna
      "break" if they touch him/her. Basically, all you need to do is be ready
      for the day that Austin, his friends or other family members may ask about
      his CP - If you can tell Austin or his twin about Austin's CP in a way that
      wont frighten them, then I would do so. Austin is a special young man, and
      I know that you love him dearly. Tell Austin that he is a special young
      man....and that he can do anything he sets his mind to - make him feel
      really good, and remember to tell him the good points of having a
      disability - Most importantly, tell him to always try his best, and NOT to
      give up - give him as much support as you can, and I am sure that Austin and
      his Twin will be able to deal with any questions that may arise - and make
      sure that you are there for the times that they may not understand what is
      asked.............Believe me, that is the best way to deal with it.

      I had friends that would take care of me in school, and they were not mean
      or hurtful. They learned alot about me, and I learned alot about them. It
      got to be a good feeling if I would fall somewhere in a hall or classroom,
      because a bunch of my friends were there to help me :) I also knew that
      when the chips were down that they would help me :) If you can instill the
      fact that Austin is a "special" one of a kind person that has needs, but can
      do alot for himself, that will give him confidence as he grows up.

      I, being 32, have been asked many times about my disability, and my response
      is based on the age of the child, and the type of question asked.........CP
      can be a frightening thing to a child who has not seen a child that has it,
      but if you can explain, then it doesn't seem to be as frightening. I had a
      cousin when she was 2, that would NOT come near me when I was anywhere near
      my crutches, because she thought I ws a "robot" or that I was gonna hit her.
      But, when my Uncle brought her to me about 3 hours later, she wanted to sit
      and hug me, because she did'nt feel threatend by my crutches.......but I
      undertood why, because I was about 6' tall with these metal sticks, and she
      was scared :)

      Hope this helps you - if you want to contact me, please feel free to do so

      bsb31@...

      Buddy
      32/m/cp/VT

      -----Original Message-----
      From: Lisa McDonald [mailto:frazzledone413@...]
      Sent: Sunday, August 22, 2004 2:14 PM
      To: cerebralpalsyclub@yahoogroups.com
      Subject: [CEREBRAL PALSY CLUB] When Question arise


      Austin ( 5 y.o. spastic diplegia, twin is "normal") is transitioning from
      a school for special needs children to our home public school for
      Kindergarten this year. I am wondering how you all handle questions from
      other children about your childs condition. Even Austin,or his twin for
      that matter, never really questioned his disability.

      Any input would be greatly appreciated.

      Thanks

      Lisa Mc


      [Non-text portions of this message have been removed]


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    • Shannon Tinsley
      That is one of the main reasons i would like to bring more awarness to CP. Being a young parent, I get that a lot too. Before we got the wheelchair, Jordan
      Message 2 of 6 , Aug 22, 2004
        That is one of the main reasons i would like to bring more awarness to CP. Being a young parent, I get that a lot too. Before we got the wheelchair, Jordan used to ride in a stroller and people would say "your too big to be in that stroller" Or "You should be pushing your Mommy" But the most common one is "I'm soo sorry" But I'm not sorry. Jordan came here to teach me unconditional love and being that she is so articulate helps even more.

        I no longer get discourage and the knot in my stomach when people would question me. It's so much easier now. My goal is to bring more awarness to CP thru music, tv, concerts and so much more. I think once people are aware on a national level that it will be less difficult for situations like that. However, i do see them trying to mainstream this with Ad's in Toys R Us circulars and others. Well, I'm very proud of you Buddy and respect the way you handle yourself.

        Shannon

        **Buddy** <bsb31@...> wrote:
        Lisa:

        As a child. and as an adult, there werre people who asked me questions about
        my disability. In most cases, it was easy to tell people about what it was
        that I had. It took me a few years to be able to really understand what CP
        was, and I think my mom did a good job explaining it to me. Most times,
        there are adults that understand what CP is, and 75% of the time, its the
        3-5 year olds that wonder when they see me walk by them. They say "Mommy,
        what happened to his legs" or "why does he use those." (referring to my
        crutches)

        When this happens, I will sometimes hear parents act as if their child asked
        a "forbidden" or "off limits" question. They sigh, and act as if it was an
        embarrassment to them. What I do is to come right down to thier level (Im
        over 6' tall) so they can feel more comfortable tallking to me. I look them
        right in the eye, and I say something that is age appropriate.....Such as:

        "These crutches help me to walk and support me. Your legs help you to walk
        and support you, and that is what my crutches do for me.......what happened
        is that in my head, there are signals that go from your brain to your legs,
        and in my case, the part of the brain that deals with the signals to my legs
        is not functioning as it would be for you. I can walk, I just can't walk
        as well as you can, but that doesn't stop me."

        I tell the parents that I would much rather have a child or an adult ask me
        about my disability, rather then to assume the worst. There is nothing to
        be asamed of about having a disability, and those that don't ASK will not
        learn about a diabled child. (or adult)

        Austin and his twin may not ask about his disability because it may not be
        an issue for him or his twin. They may think that having a special brother
        is cool, or that Austin is special, and they deal with it on their own
        levels. Children are inquisitive, and they WILL ASK about a disability, but
        they should not be afraid of the fact that a special needs child is gonna
        "break" if they touch him/her. Basically, all you need to do is be ready
        for the day that Austin, his friends or other family members may ask about
        his CP - If you can tell Austin or his twin about Austin's CP in a way that
        wont frighten them, then I would do so. Austin is a special young man, and
        I know that you love him dearly. Tell Austin that he is a special young
        man....and that he can do anything he sets his mind to - make him feel
        really good, and remember to tell him the good points of having a
        disability - Most importantly, tell him to always try his best, and NOT to
        give up - give him as much support as you can, and I am sure that Austin and
        his Twin will be able to deal with any questions that may arise - and make
        sure that you are there for the times that they may not understand what is
        asked.............Believe me, that is the best way to deal with it.

        I had friends that would take care of me in school, and they were not mean
        or hurtful. They learned alot about me, and I learned alot about them. It
        got to be a good feeling if I would fall somewhere in a hall or classroom,
        because a bunch of my friends were there to help me :) I also knew that
        when the chips were down that they would help me :) If you can instill the
        fact that Austin is a "special" one of a kind person that has needs, but can
        do alot for himself, that will give him confidence as he grows up.

        I, being 32, have been asked many times about my disability, and my response
        is based on the age of the child, and the type of question asked.........CP
        can be a frightening thing to a child who has not seen a child that has it,
        but if you can explain, then it doesn't seem to be as frightening. I had a
        cousin when she was 2, that would NOT come near me when I was anywhere near
        my crutches, because she thought I ws a "robot" or that I was gonna hit her.
        But, when my Uncle brought her to me about 3 hours later, she wanted to sit
        and hug me, because she did'nt feel threatend by my crutches.......but I
        undertood why, because I was about 6' tall with these metal sticks, and she
        was scared :)

        Hope this helps you - if you want to contact me, please feel free to do so

        bsb31@...

        Buddy
        32/m/cp/VT

        -----Original Message-----
        From: Lisa McDonald [mailto:frazzledone413@...]
        Sent: Sunday, August 22, 2004 2:14 PM
        To: cerebralpalsyclub@yahoogroups.com
        Subject: [CEREBRAL PALSY CLUB] When Question arise


        Austin ( 5 y.o. spastic diplegia, twin is "normal") is transitioning from
        a school for special needs children to our home public school for
        Kindergarten this year. I am wondering how you all handle questions from
        other children about your childs condition. Even Austin,or his twin for
        that matter, never really questioned his disability.

        Any input would be greatly appreciated.

        Thanks

        Lisa Mc


        [Non-text portions of this message have been removed]


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      • Lisa McDonald
        Buddy, THANK YOU SO MUCH for your encouraging words! I will always have an answer at the tip of my tongue now. By the way you sound in your email, you should
        Message 3 of 6 , Aug 22, 2004
          Buddy,

          THANK YOU SO MUCH for your encouraging words! I will always have an answer
          at the tip of my tongue now. By the way you sound in your email, you should
          do motivational speeches! Good for you for being so honest!

          Thanks again!

          Lisa

          > Lisa:
          >
          > As a child. and as an adult, there werre people who asked me questions
          about
          > my disability. In most cases, it was easy to tell people about what it
          was
          > that I had. It took me a few years to be able to really understand what
          CP
          > was, and I think my mom did a good job explaining it to me. Most times,
          > there are adults that understand what CP is, and 75% of the time, its the
          > 3-5 year olds that wonder when they see me walk by them. They say "Mommy,
          > what happened to his legs" or "why does he use those." (referring to my
          > crutches)
          >
          > When this happens, I will sometimes hear parents act as if their child
          asked
          > a "forbidden" or "off limits" question. They sigh, and act as if it was
          an
          > embarrassment to them. What I do is to come right down to thier level (Im
          > over 6' tall) so they can feel more comfortable tallking to me. I look
          them
          > right in the eye, and I say something that is age appropriate.....Such as:
          >
          > "These crutches help me to walk and support me. Your legs help you to
          walk
          > and support you, and that is what my crutches do for me.......what
          happened
          > is that in my head, there are signals that go from your brain to your
          legs,
          > and in my case, the part of the brain that deals with the signals to my
          legs
          > is not functioning as it would be for you. I can walk, I just can't walk
          > as well as you can, but that doesn't stop me."
          >
          > I tell the parents that I would much rather have a child or an adult ask
          me
          > about my disability, rather then to assume the worst. There is nothing to
          > be asamed of about having a disability, and those that don't ASK will not
          > learn about a diabled child. (or adult)
          >
          > Austin and his twin may not ask about his disability because it may not be
          > an issue for him or his twin. They may think that having a special
          brother
          > is cool, or that Austin is special, and they deal with it on their own
          > levels. Children are inquisitive, and they WILL ASK about a disability,
          but
          > they should not be afraid of the fact that a special needs child is gonna
          > "break" if they touch him/her. Basically, all you need to do is be ready
          > for the day that Austin, his friends or other family members may ask about
          > his CP - If you can tell Austin or his twin about Austin's CP in a way
          that
          > wont frighten them, then I would do so. Austin is a special young man,
          and
          > I know that you love him dearly. Tell Austin that he is a special young
          > man....and that he can do anything he sets his mind to - make him feel
          > really good, and remember to tell him the good points of having a
          > disability - Most importantly, tell him to always try his best, and NOT to
          > give up - give him as much support as you can, and I am sure that Austin
          and
          > his Twin will be able to deal with any questions that may arise - and make
          > sure that you are there for the times that they may not understand what is
          > asked.............Believe me, that is the best way to deal with it.
          >
          > I had friends that would take care of me in school, and they were not mean
          > or hurtful. They learned alot about me, and I learned alot about them.
          It
          > got to be a good feeling if I would fall somewhere in a hall or classroom,
          > because a bunch of my friends were there to help me :) I also knew that
          > when the chips were down that they would help me :) If you can instill
          the
          > fact that Austin is a "special" one of a kind person that has needs, but
          can
          > do alot for himself, that will give him confidence as he grows up.
          >
          > I, being 32, have been asked many times about my disability, and my
          response
          > is based on the age of the child, and the type of question
          asked.........CP
          > can be a frightening thing to a child who has not seen a child that has
          it,
          > but if you can explain, then it doesn't seem to be as frightening. I had
          a
          > cousin when she was 2, that would NOT come near me when I was anywhere
          near
          > my crutches, because she thought I ws a "robot" or that I was gonna hit
          her.
          > But, when my Uncle brought her to me about 3 hours later, she wanted to
          sit
          > and hug me, because she did'nt feel threatend by my crutches.......but I
          > undertood why, because I was about 6' tall with these metal sticks, and
          she
          > was scared :)
          >
          > Hope this helps you - if you want to contact me, please feel free to do so
          >
          > bsb31@...
          >
          > Buddy
          > 32/m/cp/VT
          >
          > -----Original Message-----
          > From: Lisa McDonald [mailto:frazzledone413@...]
          > Sent: Sunday, August 22, 2004 2:14 PM
          > To: cerebralpalsyclub@yahoogroups.com
          > Subject: [CEREBRAL PALSY CLUB] When Question arise
          >
          >
          > Austin ( 5 y.o. spastic diplegia, twin is "normal") is transitioning
          from
          > a school for special needs children to our home public school for
          > Kindergarten this year. I am wondering how you all handle questions from
          > other children about your childs condition. Even Austin,or his twin for
          > that matter, never really questioned his disability.
          >
          > Any input would be greatly appreciated.
          >
          > Thanks
          >
          > Lisa Mc
          >
          >
          > [Non-text portions of this message have been removed]
          >
          >
          > Yahoo! Groups Sponsor
          > ADVERTISEMENT
          >
          >
          >
          >
          >
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          > --
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          >
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          > http://groups.yahoo.com/group/cerebralpalsyclub/
          >
          > b.. To unsubscribe from this group, send an email to:
          > cerebralpalsyclub-unsubscribe@yahoogroups.com
          >
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          >
          >
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          > [Non-text portions of this message have been removed]
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          >
        • Debra Marasco-McNulty
          When my son was growing up, I tried to make sure I answered questions, even the unasked questions. I would see a child staring at Jason and I would talk to
          Message 4 of 6 , Aug 25, 2004
            When my son was growing up, I tried to make sure I
            answered questions, even the unasked questions. I
            would see a child staring at Jason and I would talk to
            them, something like "Hi, my name is Mrs. Marasco adn
            this is my son Jason. He is not able to walk or use
            his hands yet, but maybe he will some day. But he
            hears great and if you want to say Hi he would like
            that. But, we're not sure how much he sees so what we
            do is touch his hand when we talk to him so he knows
            it is him we are talking too." or "big stroller, huh,
            he can't walk yet, isn't it neat that they make
            stroller for all sizes of people". One time a 'punk
            rock' type guy with piercings etc saw Jason's trach
            and said "Man! Whats with that?", I replied"New type
            of body piercing, his brother got his tongue pierced
            and Jason just wanted to outdo him." Shows that the
            guy was probly on something when he said, "Wow< that's
            rich", then gave Jason a thumbs up saying "righteous!"
            The teens say translated,that was a positive feedback.
            Jason's disability is due to a stroke when he was a
            baby; but when a teen was skateboarding by, he said
            "What happend too him!" and pointed his finger,
            Jason's stepfather replied "skateboard accident,
            wasn't wearing a helmet."

            I guess it depends on the way questions are asked and
            my mood at the time. Now that I've been through this
            a number of years, my skin is a little thicker and
            some things don't bother me as much as it used to. I
            would try not to over-react when I was with his
            brother because he would get real angry and defensive
            of his brother with people's stareing etc.

            Debra M-Mc
            --- Lisa McDonald <frazzledone413@...> wrote:

            > Austin ( 5 y.o. spastic diplegia, twin is "normal")
            > is transitioning from a school for special needs
            > children to our home public school for Kindergarten
            > this year. I am wondering how you all handle
            > questions from other children about your childs
            > condition. Even Austin,or his twin for that matter,
            > never really questioned his disability.
            >
            > Any input would be greatly appreciated.
            >
            > Thanks
            >
            > Lisa Mc
            >
            >
            > [Non-text portions of this message have been
            > removed]
            >
            >
          • chrisb16_us
            ... wrote: Hi everyone I could not pass this one up. When Kids ask about my 11 year olds disability I simply tell them that Joshs brain
            Message 5 of 6 , Aug 30, 2004
              --- In cerebralpalsyclub@yahoogroups.com, Shannon Tinsley
              <enlighten_me18@y...> wrote: Hi everyone I could not pass this one
              up. When Kids ask about my 11 year olds disability I simply tell
              them that Joshs brain was hurt when he was born and that he can't
              walk or talk because his brain can't remind him too. It is very
              simple and to the point and they really seem to understand. ( works
              on some adults too) lol My younger son is 6 and has taken over that
              explanation for me. Which makes me very proud he has only ever asked
              about his brother once when he was 2. I told him the same thing and
              he has never needed to ask again. hope that helps.
              > That is one of the main reasons i would like to bring more awarness
              to CP. Being a young parent, I get that a lot too. Before we got the
              wheelchair, Jordan used to ride in a stroller and people would
              say "your too big to be in that stroller" Or "You should be pushing
              your Mommy" But the most common one is "I'm soo sorry" But I'm not
              sorry. Jordan came here to teach me unconditional love and being that
              she is so articulate helps even more.
              >
              > I no longer get discourage and the knot in my stomach when people
              would question me. It's so much easier now. My goal is to bring more
              awarness to CP thru music, tv, concerts and so much more. I think
              once people are aware on a national level that it will be less
              difficult for situations like that. However, i do see them trying to
              mainstream this with Ad's in Toys R Us circulars and others. Well,
              I'm very proud of you Buddy and respect the way you handle yourself.
              >
              > Shannon
              >
              > **Buddy** <bsb31@c...> wrote:
              > Lisa:
              >
              > As a child. and as an adult, there werre people who asked me
              questions about
              > my disability. In most cases, it was easy to tell people about
              what it was
              > that I had. It took me a few years to be able to really understand
              what CP
              > was, and I think my mom did a good job explaining it to me. Most
              times,
              > there are adults that understand what CP is, and 75% of the time,
              its the
              > 3-5 year olds that wonder when they see me walk by them. They
              say "Mommy,
              > what happened to his legs" or "why does he use those." (referring
              to my
              > crutches)
              >
              > When this happens, I will sometimes hear parents act as if their
              child asked
              > a "forbidden" or "off limits" question. They sigh, and act as if
              it was an
              > embarrassment to them. What I do is to come right down to thier
              level (Im
              > over 6' tall) so they can feel more comfortable tallking to me. I
              look them
              > right in the eye, and I say something that is age
              appropriate.....Such as:
              >
              > "These crutches help me to walk and support me. Your legs help you
              to walk
              > and support you, and that is what my crutches do for me.......what
              happened
              > is that in my head, there are signals that go from your brain to
              your legs,
              > and in my case, the part of the brain that deals with the signals
              to my legs
              > is not functioning as it would be for you. I can walk, I just
              can't walk
              > as well as you can, but that doesn't stop me."
              >
              > I tell the parents that I would much rather have a child or an
              adult ask me
              > about my disability, rather then to assume the worst. There is
              nothing to
              > be asamed of about having a disability, and those that don't ASK
              will not
              > learn about a diabled child. (or adult)
              >
              > Austin and his twin may not ask about his disability because it may
              not be
              > an issue for him or his twin. They may think that having a special
              brother
              > is cool, or that Austin is special, and they deal with it on their
              own
              > levels. Children are inquisitive, and they WILL ASK about a
              disability, but
              > they should not be afraid of the fact that a special needs child is
              gonna
              > "break" if they touch him/her. Basically, all you need to do is be
              ready
              > for the day that Austin, his friends or other family members may
              ask about
              > his CP - If you can tell Austin or his twin about Austin's CP in a
              way that
              > wont frighten them, then I would do so. Austin is a special young
              man, and
              > I know that you love him dearly. Tell Austin that he is a special
              young
              > man....and that he can do anything he sets his mind to - make him
              feel
              > really good, and remember to tell him the good points of having a
              > disability - Most importantly, tell him to always try his best, and
              NOT to
              > give up - give him as much support as you can, and I am sure that
              Austin and
              > his Twin will be able to deal with any questions that may arise -
              and make
              > sure that you are there for the times that they may not understand
              what is
              > asked.............Believe me, that is the best way to deal with it.
              >
              > I had friends that would take care of me in school, and they were
              not mean
              > or hurtful. They learned alot about me, and I learned alot about
              them. It
              > got to be a good feeling if I would fall somewhere in a hall or
              classroom,
              > because a bunch of my friends were there to help me :) I also knew
              that
              > when the chips were down that they would help me :) If you can
              instill the
              > fact that Austin is a "special" one of a kind person that has
              needs, but can
              > do alot for himself, that will give him confidence as he grows up.
              >
              > I, being 32, have been asked many times about my disability, and my
              response
              > is based on the age of the child, and the type of question
              asked.........CP
              > can be a frightening thing to a child who has not seen a child that
              has it,
              > but if you can explain, then it doesn't seem to be as frightening.
              I had a
              > cousin when she was 2, that would NOT come near me when I was
              anywhere near
              > my crutches, because she thought I ws a "robot" or that I was gonna
              hit her.
              > But, when my Uncle brought her to me about 3 hours later, she
              wanted to sit
              > and hug me, because she did'nt feel threatend by my
              crutches.......but I
              > undertood why, because I was about 6' tall with these metal sticks,
              and she
              > was scared :)
              >
              > Hope this helps you - if you want to contact me, please feel free
              to do so
              >
              > bsb31@c...
              >
              > Buddy
              > 32/m/cp/VT
              >
              > -----Original Message-----
              > From: Lisa McDonald [mailto:frazzledone413@c...]
              > Sent: Sunday, August 22, 2004 2:14 PM
              > To: cerebralpalsyclub@yahoogroups.com
              > Subject: [CEREBRAL PALSY CLUB] When Question arise
              >
              >
              > Austin ( 5 y.o. spastic diplegia, twin is "normal") is
              transitioning from
              > a school for special needs children to our home public school for
              > Kindergarten this year. I am wondering how you all handle
              questions from
              > other children about your childs condition. Even Austin,or his
              twin for
              > that matter, never really questioned his disability.
              >
              > Any input would be greatly appreciated.
              >
              > Thanks
              >
              > Lisa Mc
              >
              >
              > [Non-text portions of this message have been removed]
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