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RE: [CEREBRAL PALSY CLUB] Re: Difficult 3 year old

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  • **Buddy**
    Shannon: I know that raising a child with special needs is not easy, and I guess I was no angel myself. I consider myself lucky that I was mainstreamed from
    Message 1 of 6 , Jan 22, 2005
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      Shannon:

      I know that raising a child with special needs is not easy, and I guess I
      was no angel myself. I consider myself lucky that I was mainstreamed from
      the start. (Kindergarten on up) I had to transfer to another school in the
      neighboring town because they had the setup that I needed. The City did not
      have a special services person that could adequately provide for my needs,
      so at the end of grade 3, I was told to say goodbye to all my friends and
      that I would be moving to the town school for grade 4. Little did I know
      that would be the start of the best years of my life, where in a span of 2
      years in grade 4, they would get my math level to grade level, and help me
      to write/print better, and I met some really good friends that I went
      through school with. I graduated from elementary school in 1987, High
      School in 1991, college (A,S,) 1993 and (B,S,) 1995.

      I even got to meet some people in the multi-age/multi-handicap classes and I
      was selected to assist them once a week and socialize with some of them.
      The experience hit home, because some of them could not speak, or were
      nonverbal and used communication devices or noises to communicate thier
      needs - Just like my brother Richard used to do. Jordan is in a class with
      special needs children, and some are unable to communicate with speech or
      with communication devices. Jordan, if she is able to communicate with
      speech is a very lucky girl, and hopefully she will understand that there
      are others in her class that are unable to communicate the way she does.

      Melissa communicates in an appropriate way considering the scope of her
      disability - some children can't do any more than make noises to make
      themselves known (Ricky used to make noises too) Jordan should not be
      allowed to whine and cry to get what she wants if she can speak to you in an
      appropriate way, and you should only respond to her wants if she can use her
      voice to communicate them to you - if she decides to throw a tantrum, then
      you could follow the advice below.


      >>I've visited the classroom several times and notice that Jordan (my
      daughter) is on of the ones who is more verbal. I would like to see her
      with normal children of her age to mainstream her slowly into regular or
      special classes.<<


      Jordan should be using her skills to her best ability, and NOT trying to
      backstep or communicate in any other way then she has the ability to. If
      Jordan is in a class with special needs kids of multiple age groups, she
      should be told that if she wants to be able to move to a mainstream class
      someday, that they want her to be ready as much as possible. At nine, it
      can be difficult if she has not been mainsreamed or exposed to her peers
      (her own age level) in the classroom, but it is NOT impossible - but some of
      her behaviors can be modified to some degree so that it would be easier.
      You cannot cry and whine in a mainstream class setting when you want
      something you can't get, and I quickly learned that this behavior would not
      get you anywhere, especially when I saw my friends laughing at me - peer
      pressure can correct this behavior somewhat, but your services team should
      be able to help you with some of this, to determine what behaviors are
      appropriate for her, and which are not if you wish to go the mainstream
      route. Of Course, the Team will be with you and Jordan all the way, so you
      should use them as much as possible to help you - they can help you make the
      decision. Mainstreaming is NOT easy, and there are gonna be challenges all
      the way - but I can tell you that as far as I am concerned, it helped me
      become a better person because I had to learn to keep my emotions/anger in
      check, and sometimes and it was hard, but I had good friends that helped me
      to learn the things that you just don't learn in a special class (the 1 to
      1, the companionship, and the ability to deal with me when I just don't
      "get" something)

      >>Sometimes it's difficult because at school she acts one way then at home
      she's another person. For examle they will tell me she's not doing something
      there but when I have her one on one she's always completing the task<<

      Yes, it can be difficult - the setting she is in can be a determining factor
      in how she behaves. Jordan may not do a task well in one environmental
      setting, but complete it at home one on one. This may be due to the fact
      that you stick with it until it is finished and her attention is on target
      while completing it - maybe she is distracted at school or other factors are
      causing her not to complete tasks well - I don't know if there is a way that
      the Team can help you there, but Jordan may work best 1 to 1 to complete
      tasks. It would depend on her IEP, which can be made to suit her needs :)

      >>It becomes very frustrating at times and I find myself in tears behind
      closed doors because I'm supposed to be this "strong" young lady who defeats
      adversaties in life. These past 9 years have been a test of my faith, but as
      she grows I don't know if I'll be able to withstand it.<<

      Shannon: Having a child is one of the many wonders in life that is a good
      thing. Your job is as a mother, and with that comes some interesting
      challenges that you will face yourself and as a team. I don't think anyone
      expects you to slay dragons, or defeat adversaries like Goliath, but you
      have been there for Jordan, and I am sure that she loves you very much, and
      that you love her equally as much, but you know what? You are strong,
      because you are FACING these challenges everyday, and each time you do, you
      get stronger, because you take something away from each challenge and
      remember what you learned from it. It is OK to feel like you are not sure
      what to do, and it's OK to "crash" every once and awhile - Everyone does :)
      Just remember the most important thing is that regardless of what happens:
      DO NOT LET yourself or Jordan "feel sorry" for herself - that is the worst
      thing you can do - because for every person who does this, there are people
      MUCH WORSE OFF then you two are :) Be proud of what Jordan does, and be
      PROUD that you are her momma - God gave you an angel, and through HIM, you
      will do just fine :)

      >>Jordan is also very talented with music and I would love to see her have
      voice lessons, participate in different activities but I'm a single mom and
      I work and a lot of those things are done while I'm working.<<

      is there a way that some of these types of activities are offered as an
      after school supervised activity? I know that I was in Chorus for about 5
      years while I was in Elementary/Middle School, and I learned alot when I was
      doing this, even going to a couple valley wide concerts and things - I am
      not sure whether some of these types of activities such as Music are offered
      in her curriculum, but I know that Music and Art and Phys. Ed. were offered
      to me (P.E. was 1 one one, then increased to 5 students in my PE class),
      which made it easier to do things such as tennis, golf, archery,
      badminton,etc. You may find that these classes may be offered during her
      school day, or as a after school activity Maybe they will bus her home
      afterwards :)

      I just wanted to say pray for me that I may be able to be the mother/parent
      that I need to be to this Angel sent by God.

      Shannon: Of COURSE I will :)

      Good Luck

      Buddy
      32/m/CP/VT





      -----Original Message-----
      From: Shannon Tinsley [mailto:enlighten_me18@...]
      Sent: Friday, January 21, 2005 3:23 PM
      To: cerebralpalsyclub@yahoogroups.com
      Subject: Re: [CEREBRAL PALSY CLUB] Re: Difficult 3 year old


      Well, I have a similar problem as well. My daughter who is nine (9) with
      spastistic CP is in a classroom where some of the children can't talk or
      don't communicate very well verbally. So at home she tends to whine and cry
      for the simple things. When I ask her why she says because Melissa (child in
      class who doesn't talk at all but makes noises to communicate) does it.



      Jordan's Mom

      Brian Baker <bsb31@...> wrote:

      --- In cerebralpalsyclub@yahoogroups.com, "rockchalkfan17"
      <rockchalkfan17@y...> wrote:
      >
      > I have a 3 year old daughter with severe CP who has started
      > preschool this year. She loves school, however is becoming
      > increasingly frustrated and bored at home. The problem? I also
      > have a 5 1/2 month old baby girl who also keeps me very busy. My
      > oldest has now decided to use tantrums as her favorite way of
      > communicating. Any suggestions or advice from anyone who's been
      > there or is going through a similar situation?
      >
      > Thank you from a stessed out mother on the edge...

      Hello there :)

      I would say that the reason your daughter is "acting out" is to get
      more attention. This can be a problem for both parents of non-
      disabled children as well as for those who have disabled children.
      I am not sure what she does in school, and it may be that the things
      she does in school stimulate her so that she is not frustrated or
      bored because there is always action going on in school, and when
      she gets home, she may find that she does not get that level of
      attention, which may cause your daughter to "act up" in an
      inappropriate way - (tantrums) which causes YOU to pull your hair
      out and stress yourself out, because you are taking care of her
      sister, who is younger then she is, and requires more of your
      attention.

      I am not sure of the level of severity of your daughter's CP, so I
      need to ask if she can walk or is mobile, or in a wheelchair, and
      whether she can get around the house by propelling herself, or
      whether she is unable to do this task or to communicate with speech
      or with a communication device. Frustration in communication or
      mobility may be a problem, but if she can communicate and ambulate
      in a way that you feel is appropriate, this may not be a problem per
      se, and you would have to use an appropriate deterant to let her
      know that you want her to use the appropriate means of communication
      that you KNOW she can use to get your attention. This means that if
      she can tell you what she wants without throwing a tantrum, whining,
      etc, that this is what she should be told is the "right way" to get
      your attention.

      LET US ASSUME SHE "CAN" COMMUNICATE APPROPRIATELY
      =================================================
      If this is the case:

      If she decides to throw a fit, hit, pinch, cry, screem, pout, etc,
      you simply tell her that "This behavior is not acceptable, and you
      will not get what you want by acting this way" and you remove her
      from the situation until she can calm down enough to tell you what
      she wants. The time out should be situationally appropriate, as
      well as age appropriate. Each time she acts liike this, you do the
      same thing, and remain consistant - do not reward bad behavior.

      You could also tell her that she is a "big girl" and that if she
      wants something, she needs to tell you or ask you using her "Big
      girl" voice, because you will not respond to her requests if she is
      not acting like a big girl. This does not mean that you totally
      ignore her needs, just ignore the inappropriate behavior, and soon,
      she will realize that the only way she gets what she wants is to act
      like a big girl - or you could go the other way, and ask her if she
      is a baby, and if she says "no" then you could say "Then you need to
      show me you can act/talk like a big girl does, and not like a baby,
      or you will be treated like one." I have nephews, and I know that
      the minute you say that "you are acting like a baby, and will be
      treated like one then" they will quickly decide to change thier
      attitudes.

      As far as attention goes, this can be hard, but I suggest that as
      much as possible, you spend as much time as you can with your
      daughter, and as necessary have her dad or other family members
      spend some QT with her as well - this will take *some* of the
      pressure off of you. The main problem that I see is that your
      daughter wants to have your attention, and she thinks that throwing
      tantrums will get that attention - YOU have to take control and show
      her that the "attention" she gets from bad behavior is the attention
      that she does NOT want. Her Sister is the baby, and sister has
      reason to cry and that is to let you know something is up - As the
      oldest, your daughter must communicate in an acceptable way
      (considering her disability fully) so that she can get what she
      needs and wants - do NOT be afraid of saying "NO" :) and dont be
      afraid to hear it come from your daughter, because at 3, they are
      testing the waters to see what they can do and not do for themselves.

      Good Luck ;)

      Buddy
      32/m/CP/VT






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      [Non-text portions of this message have been removed]
    • Shannon Tinsley
      Buddy: Words and emotions could not express how I felt after reading your email which I also read aloud to Jordan who did nothing but smiled and smirked as I
      Message 2 of 6 , Jan 24, 2005
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        Buddy:

        Words and emotions could not express how I felt after reading your email which I also read aloud to Jordan who did nothing but smiled and smirked as I read it, especially the part when you said "Jordan should not be allowed to whine and cry for the things that she wants" etc... And all weekend long she kept saying "I have to talk and not cry when I want something, right Mommy? My heart was filled with a joy that came from a person whom I've never even come in contact with.

        I realized that I just as Jordan is special so am I because I know God choose me and considered me special just as Jordan is. I realize that Jordan is a challenge, but I've been one as well to life and those around me. I don't take anything for granted and my patience has been tried and true. Just last night we were reading "Mr. Brown Can Moo" by Dr. Seuss and I wanted to see if Jordan could read the sentence instead of memorizing which she does a lot. Well, it took a while but considering that she knows her letters and can recognize words, I challenged her and by pointing to each word and making her start from the begining when she fumbled she finally did it! Then to top it off I wrote on a seperate piece of paper "Jordan I love you very much, Love Mommy" and I asked her to read it, and she did it! All I could do was cry and thank my Master up above for patience, love and kindness.

        So I just wanted to share that with you Buddy, that you have encouraged me and although the road may not be easy and will get harder, it's your words that I will think of when I'm in need.

        I wish you much success in your life and much happiness.

        Shannon & Jordan in New York

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

        I know that raising a child with special needs is not easy, and I guess I
        was no angel myself. I consider myself lucky that I was mainstreamed from
        the start. (Kindergarten on up) I had to transfer to another school in the
        neighboring town because they had the setup that I needed. The City did not
        have a special services person that could adequately provide for my needs,
        so at the end of grade 3, I was told to say goodbye to all my friends and
        that I would be moving to the town school for grade 4. Little did I know
        that would be the start of the best years of my life, where in a span of 2
        years in grade 4, they would get my math level to grade level, and help me
        to write/print better, and I met some really good friends that I went
        through school with. I graduated from elementary school in 1987, High
        School in 1991, college (A,S,) 1993 and (B,S,) 1995.

        I even got to meet some people in the multi-age/multi-handicap classes and I
        was selected to assist them once a week and socialize with some of them.
        The experience hit home, because some of them could not speak, or were
        nonverbal and used communication devices or noises to communicate thier
        needs - Just like my brother Richard used to do. Jordan is in a class with
        special needs children, and some are unable to communicate with speech or
        with communication devices. Jordan, if she is able to communicate with
        speech is a very lucky girl, and hopefully she will understand that there
        are others in her class that are unable to communicate the way she does.

        Melissa communicates in an appropriate way considering the scope of her
        disability - some children can't do any more than make noises to make
        themselves known (Ricky used to make noises too) Jordan should not be
        allowed to whine and cry to get what she wants if she can speak to you in an
        appropriate way, and you should only respond to her wants if she can use her
        voice to communicate them to you - if she decides to throw a tantrum, then
        you could follow the advice below.


        >>I've visited the classroom several times and notice that Jordan (my
        daughter) is on of the ones who is more verbal. I would like to see her
        with normal children of her age to mainstream her slowly into regular or
        special classes.<<


        Jordan should be using her skills to her best ability, and NOT trying to
        backstep or communicate in any other way then she has the ability to. If
        Jordan is in a class with special needs kids of multiple age groups, she
        should be told that if she wants to be able to move to a mainstream class
        someday, that they want her to be ready as much as possible. At nine, it
        can be difficult if she has not been mainsreamed or exposed to her peers
        (her own age level) in the classroom, but it is NOT impossible - but some of
        her behaviors can be modified to some degree so that it would be easier.
        You cannot cry and whine in a mainstream class setting when you want
        something you can't get, and I quickly learned that this behavior would not
        get you anywhere, especially when I saw my friends laughing at me - peer
        pressure can correct this behavior somewhat, but your services team should
        be able to help you with some of this, to determine what behaviors are
        appropriate for her, and which are not if you wish to go the mainstream
        route. Of Course, the Team will be with you and Jordan all the way, so you
        should use them as much as possible to help you - they can help you make the
        decision. Mainstreaming is NOT easy, and there are gonna be challenges all
        the way - but I can tell you that as far as I am concerned, it helped me
        become a better person because I had to learn to keep my emotions/anger in
        check, and sometimes and it was hard, but I had good friends that helped me
        to learn the things that you just don't learn in a special class (the 1 to
        1, the companionship, and the ability to deal with me when I just don't
        "get" something)

        >>Sometimes it's difficult because at school she acts one way then at home
        she's another person. For examle they will tell me she's not doing something
        there but when I have her one on one she's always completing the task<<

        Yes, it can be difficult - the setting she is in can be a determining factor
        in how she behaves. Jordan may not do a task well in one environmental
        setting, but complete it at home one on one. This may be due to the fact
        that you stick with it until it is finished and her attention is on target
        while completing it - maybe she is distracted at school or other factors are
        causing her not to complete tasks well - I don't know if there is a way that
        the Team can help you there, but Jordan may work best 1 to 1 to complete
        tasks. It would depend on her IEP, which can be made to suit her needs :)

        >>It becomes very frustrating at times and I find myself in tears behind
        closed doors because I'm supposed to be this "strong" young lady who defeats
        adversaties in life. These past 9 years have been a test of my faith, but as
        she grows I don't know if I'll be able to withstand it.<<

        Shannon: Having a child is one of the many wonders in life that is a good
        thing. Your job is as a mother, and with that comes some interesting
        challenges that you will face yourself and as a team. I don't think anyone
        expects you to slay dragons, or defeat adversaries like Goliath, but you
        have been there for Jordan, and I am sure that she loves you very much, and
        that you love her equally as much, but you know what? You are strong,
        because you are FACING these challenges everyday, and each time you do, you
        get stronger, because you take something away from each challenge and
        remember what you learned from it. It is OK to feel like you are not sure
        what to do, and it's OK to "crash" every once and awhile - Everyone does :)
        Just remember the most important thing is that regardless of what happens:
        DO NOT LET yourself or Jordan "feel sorry" for herself - that is the worst
        thing you can do - because for every person who does this, there are people
        MUCH WORSE OFF then you two are :) Be proud of what Jordan does, and be
        PROUD that you are her momma - God gave you an angel, and through HIM, you
        will do just fine :)

        >>Jordan is also very talented with music and I would love to see her have
        voice lessons, participate in different activities but I'm a single mom and
        I work and a lot of those things are done while I'm working.<<

        is there a way that some of these types of activities are offered as an
        after school supervised activity? I know that I was in Chorus for about 5
        years while I was in Elementary/Middle School, and I learned alot when I was
        doing this, even going to a couple valley wide concerts and things - I am
        not sure whether some of these types of activities such as Music are offered
        in her curriculum, but I know that Music and Art and Phys. Ed. were offered
        to me (P.E. was 1 one one, then increased to 5 students in my PE class),
        which made it easier to do things such as tennis, golf, archery,
        badminton,etc. You may find that these classes may be offered during her
        school day, or as a after school activity Maybe they will bus her home
        afterwards :)

        I just wanted to say pray for me that I may be able to be the mother/parent
        that I need to be to this Angel sent by God.

        Shannon: Of COURSE I will :)

        Good Luck

        Buddy
        32/m/CP/VT





        -----Original Message-----
        From: Shannon Tinsley [mailto:enlighten_me18@...]
        Sent: Friday, January 21, 2005 3:23 PM
        To: cerebralpalsyclub@yahoogroups.com
        Subject: Re: [CEREBRAL PALSY CLUB] Re: Difficult 3 year old


        Well, I have a similar problem as well. My daughter who is nine (9) with
        spastistic CP is in a classroom where some of the children can't talk or
        don't communicate very well verbally. So at home she tends to whine and cry
        for the simple things. When I ask her why she says because Melissa (child in
        class who doesn't talk at all but makes noises to communicate) does it.



        Jordan's Mom

        Brian Baker <bsb31@...> wrote:

        --- In cerebralpalsyclub@yahoogroups.com, "rockchalkfan17"
        <rockchalkfan17@y...> wrote:
        >
        > I have a 3 year old daughter with severe CP who has started
        > preschool this year. She loves school, however is becoming
        > increasingly frustrated and bored at home. The problem? I also
        > have a 5 1/2 month old baby girl who also keeps me very busy. My
        > oldest has now decided to use tantrums as her favorite way of
        > communicating. Any suggestions or advice from anyone who's been
        > there or is going through a similar situation?
        >
        > Thank you from a stessed out mother on the edge...

        Hello there :)

        I would say that the reason your daughter is "acting out" is to get
        more attention. This can be a problem for both parents of non-
        disabled children as well as for those who have disabled children.
        I am not sure what she does in school, and it may be that the things
        she does in school stimulate her so that she is not frustrated or
        bored because there is always action going on in school, and when
        she gets home, she may find that she does not get that level of
        attention, which may cause your daughter to "act up" in an
        inappropriate way - (tantrums) which causes YOU to pull your hair
        out and stress yourself out, because you are taking care of her
        sister, who is younger then she is, and requires more of your
        attention.

        I am not sure of the level of severity of your daughter's CP, so I
        need to ask if she can walk or is mobile, or in a wheelchair, and
        whether she can get around the house by propelling herself, or
        whether she is unable to do this task or to communicate with speech
        or with a communication device. Frustration in communication or
        mobility may be a problem, but if she can communicate and ambulate
        in a way that you feel is appropriate, this may not be a problem per
        se, and you would have to use an appropriate deterant to let her
        know that you want her to use the appropriate means of communication
        that you KNOW she can use to get your attention. This means that if
        she can tell you what she wants without throwing a tantrum, whining,
        etc, that this is what she should be told is the "right way" to get
        your attention.

        LET US ASSUME SHE "CAN" COMMUNICATE APPROPRIATELY
        =================================================
        If this is the case:

        If she decides to throw a fit, hit, pinch, cry, screem, pout, etc,
        you simply tell her that "This behavior is not acceptable, and you
        will not get what you want by acting this way" and you remove her
        from the situation until she can calm down enough to tell you what
        she wants. The time out should be situationally appropriate, as
        well as age appropriate. Each time she acts liike this, you do the
        same thing, and remain consistant - do not reward bad behavior.

        You could also tell her that she is a "big girl" and that if she
        wants something, she needs to tell you or ask you using her "Big
        girl" voice, because you will not respond to her requests if she is
        not acting like a big girl. This does not mean that you totally
        ignore her needs, just ignore the inappropriate behavior, and soon,
        she will realize that the only way she gets what she wants is to act
        like a big girl - or you could go the other way, and ask her if she
        is a baby, and if she says "no" then you could say "Then you need to
        show me you can act/talk like a big girl does, and not like a baby,
        or you will be treated like one." I have nephews, and I know that
        the minute you say that "you are acting like a baby, and will be
        treated like one then" they will quickly decide to change thier
        attitudes.

        As far as attention goes, this can be hard, but I suggest that as
        much as possible, you spend as much time as you can with your
        daughter, and as necessary have her dad or other family members
        spend some QT with her as well - this will take *some* of the
        pressure off of you. The main problem that I see is that your
        daughter wants to have your attention, and she thinks that throwing
        tantrums will get that attention - YOU have to take control and show
        her that the "attention" she gets from bad behavior is the attention
        that she does NOT want. Her Sister is the baby, and sister has
        reason to cry and that is to let you know something is up - As the
        oldest, your daughter must communicate in an acceptable way
        (considering her disability fully) so that she can get what she
        needs and wants - do NOT be afraid of saying "NO" :) and dont be
        afraid to hear it come from your daughter, because at 3, they are
        testing the waters to see what they can do and not do for themselves.

        Good Luck ;)

        Buddy
        32/m/CP/VT






        ---------------------------------
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        To visit your group on the web, go to:
        http://groups.yahoo.com/group/cerebralpalsyclub/

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        ----------------------------------------------------------------------------
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        Yahoo! Groups Links

        a.. To visit your group on the web, go to:
        http://groups.yahoo.com/group/cerebralpalsyclub/

        b.. To unsubscribe from this group, send an email to:
        cerebralpalsyclub-unsubscribe@yahoogroups.com

        c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



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



        ---------------------------------
        Yahoo! Groups Links

        To visit your group on the web, go to:
        http://groups.yahoo.com/group/cerebralpalsyclub/

        To unsubscribe from this group, send an email to:
        cerebralpalsyclub-unsubscribe@yahoogroups.com

        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


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      • ajay kumar
        hi everybody, the problems narrated by all them below is touching when i consider the case of my son with that. my son aged 8 yrs is suffering from severe
        Message 3 of 6 , Jan 25, 2005
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          hi everybody,
          the problems narrated by all them below is touching when i consider the case of my son with that. my son aged 8 yrs is suffering from severe spastic CP and is trying to stand when supported by some body and no speech . he is going to a special school as there is no other way in this part of the world. only some medicre way way of therapy(the best that is available) is being given to him. i am giving ayurvedic treatment which i am very much sure is helping to relax his tones. i am now a days worried about his speech in particular as i feel that the others can be looked after by therapy. if some body could give us a helping hand so that a lot of kids in my sons school can be helped.

          thanks,

          regards,

          ajay

          Shannon Tinsley <enlighten_me18@...> wrote:
          Buddy:

          Words and emotions could not express how I felt after reading your email which I also read aloud to Jordan who did nothing but smiled and smirked as I read it, especially the part when you said "Jordan should not be allowed to whine and cry for the things that she wants" etc... And all weekend long she kept saying "I have to talk and not cry when I want something, right Mommy? My heart was filled with a joy that came from a person whom I've never even come in contact with.

          I realized that I just as Jordan is special so am I because I know God choose me and considered me special just as Jordan is. I realize that Jordan is a challenge, but I've been one as well to life and those around me. I don't take anything for granted and my patience has been tried and true. Just last night we were reading "Mr. Brown Can Moo" by Dr. Seuss and I wanted to see if Jordan could read the sentence instead of memorizing which she does a lot. Well, it took a while but considering that she knows her letters and can recognize words, I challenged her and by pointing to each word and making her start from the begining when she fumbled she finally did it! Then to top it off I wrote on a seperate piece of paper "Jordan I love you very much, Love Mommy" and I asked her to read it, and she did it! All I could do was cry and thank my Master up above for patience, love and kindness.

          So I just wanted to share that with you Buddy, that you have encouraged me and although the road may not be easy and will get harder, it's your words that I will think of when I'm in need.

          I wish you much success in your life and much happiness.

          Shannon & Jordan in New York

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

          I know that raising a child with special needs is not easy, and I guess I
          was no angel myself. I consider myself lucky that I was mainstreamed from
          the start. (Kindergarten on up) I had to transfer to another school in the
          neighboring town because they had the setup that I needed. The City did not
          have a special services person that could adequately provide for my needs,
          so at the end of grade 3, I was told to say goodbye to all my friends and
          that I would be moving to the town school for grade 4. Little did I know
          that would be the start of the best years of my life, where in a span of 2
          years in grade 4, they would get my math level to grade level, and help me
          to write/print better, and I met some really good friends that I went
          through school with. I graduated from elementary school in 1987, High
          School in 1991, college (A,S,) 1993 and (B,S,) 1995.

          I even got to meet some people in the multi-age/multi-handicap classes and I
          was selected to assist them once a week and socialize with some of them.
          The experience hit home, because some of them could not speak, or were
          nonverbal and used communication devices or noises to communicate thier
          needs - Just like my brother Richard used to do. Jordan is in a class with
          special needs children, and some are unable to communicate with speech or
          with communication devices. Jordan, if she is able to communicate with
          speech is a very lucky girl, and hopefully she will understand that there
          are others in her class that are unable to communicate the way she does.

          Melissa communicates in an appropriate way considering the scope of her
          disability - some children can't do any more than make noises to make
          themselves known (Ricky used to make noises too) Jordan should not be
          allowed to whine and cry to get what she wants if she can speak to you in an
          appropriate way, and you should only respond to her wants if she can use her
          voice to communicate them to you - if she decides to throw a tantrum, then
          you could follow the advice below.


          >>I've visited the classroom several times and notice that Jordan (my
          daughter) is on of the ones who is more verbal. I would like to see her
          with normal children of her age to mainstream her slowly into regular or
          special classes.<<


          Jordan should be using her skills to her best ability, and NOT trying to
          backstep or communicate in any other way then she has the ability to. If
          Jordan is in a class with special needs kids of multiple age groups, she
          should be told that if she wants to be able to move to a mainstream class
          someday, that they want her to be ready as much as possible. At nine, it
          can be difficult if she has not been mainsreamed or exposed to her peers
          (her own age level) in the classroom, but it is NOT impossible - but some of
          her behaviors can be modified to some degree so that it would be easier.
          You cannot cry and whine in a mainstream class setting when you want
          something you can't get, and I quickly learned that this behavior would not
          get you anywhere, especially when I saw my friends laughing at me - peer
          pressure can correct this behavior somewhat, but your services team should
          be able to help you with some of this, to determine what behaviors are
          appropriate for her, and which are not if you wish to go the mainstream
          route. Of Course, the Team will be with you and Jordan all the way, so you
          should use them as much as possible to help you - they can help you make the
          decision. Mainstreaming is NOT easy, and there are gonna be challenges all
          the way - but I can tell you that as far as I am concerned, it helped me
          become a better person because I had to learn to keep my emotions/anger in
          check, and sometimes and it was hard, but I had good friends that helped me
          to learn the things that you just don't learn in a special class (the 1 to
          1, the companionship, and the ability to deal with me when I just don't
          "get" something)

          >>Sometimes it's difficult because at school she acts one way then at home
          she's another person. For examle they will tell me she's not doing something
          there but when I have her one on one she's always completing the task<<

          Yes, it can be difficult - the setting she is in can be a determining factor
          in how she behaves. Jordan may not do a task well in one environmental
          setting, but complete it at home one on one. This may be due to the fact
          that you stick with it until it is finished and her attention is on target
          while completing it - maybe she is distracted at school or other factors are
          causing her not to complete tasks well - I don't know if there is a way that
          the Team can help you there, but Jordan may work best 1 to 1 to complete
          tasks. It would depend on her IEP, which can be made to suit her needs :)

          >>It becomes very frustrating at times and I find myself in tears behind
          closed doors because I'm supposed to be this "strong" young lady who defeats
          adversaties in life. These past 9 years have been a test of my faith, but as
          she grows I don't know if I'll be able to withstand it.<<

          Shannon: Having a child is one of the many wonders in life that is a good
          thing. Your job is as a mother, and with that comes some interesting
          challenges that you will face yourself and as a team. I don't think anyone
          expects you to slay dragons, or defeat adversaries like Goliath, but you
          have been there for Jordan, and I am sure that she loves you very much, and
          that you love her equally as much, but you know what? You are strong,
          because you are FACING these challenges everyday, and each time you do, you
          get stronger, because you take something away from each challenge and
          remember what you learned from it. It is OK to feel like you are not sure
          what to do, and it's OK to "crash" every once and awhile - Everyone does :)
          Just remember the most important thing is that regardless of what happens:
          DO NOT LET yourself or Jordan "feel sorry" for herself - that is the worst
          thing you can do - because for every person who does this, there are people
          MUCH WORSE OFF then you two are :) Be proud of what Jordan does, and be
          PROUD that you are her momma - God gave you an angel, and through HIM, you
          will do just fine :)

          >>Jordan is also very talented with music and I would love to see her have
          voice lessons, participate in different activities but I'm a single mom and
          I work and a lot of those things are done while I'm working.<<

          is there a way that some of these types of activities are offered as an
          after school supervised activity? I know that I was in Chorus for about 5
          years while I was in Elementary/Middle School, and I learned alot when I was
          doing this, even going to a couple valley wide concerts and things - I am
          not sure whether some of these types of activities such as Music are offered
          in her curriculum, but I know that Music and Art and Phys. Ed. were offered
          to me (P.E. was 1 one one, then increased to 5 students in my PE class),
          which made it easier to do things such as tennis, golf, archery,
          badminton,etc. You may find that these classes may be offered during her
          school day, or as a after school activity Maybe they will bus her home
          afterwards :)

          I just wanted to say pray for me that I may be able to be the mother/parent
          that I need to be to this Angel sent by God.

          Shannon: Of COURSE I will :)

          Good Luck

          Buddy
          32/m/CP/VT





          -----Original Message-----
          From: Shannon Tinsley [mailto:enlighten_me18@...]
          Sent: Friday, January 21, 2005 3:23 PM
          To: cerebralpalsyclub@yahoogroups.com
          Subject: Re: [CEREBRAL PALSY CLUB] Re: Difficult 3 year old


          Well, I have a similar problem as well. My daughter who is nine (9) with
          spastistic CP is in a classroom where some of the children can't talk or
          don't communicate very well verbally. So at home she tends to whine and cry
          for the simple things. When I ask her why she says because Melissa (child in
          class who doesn't talk at all but makes noises to communicate) does it.



          Jordan's Mom

          Brian Baker <bsb31@...> wrote:

          --- In cerebralpalsyclub@yahoogroups.com, "rockchalkfan17"
          <rockchalkfan17@y...> wrote:
          >
          > I have a 3 year old daughter with severe CP who has started
          > preschool this year. She loves school, however is becoming
          > increasingly frustrated and bored at home. The problem? I also
          > have a 5 1/2 month old baby girl who also keeps me very busy. My
          > oldest has now decided to use tantrums as her favorite way of
          > communicating. Any suggestions or advice from anyone who's been
          > there or is going through a similar situation?
          >
          > Thank you from a stessed out mother on the edge...

          Hello there :)

          I would say that the reason your daughter is "acting out" is to get
          more attention. This can be a problem for both parents of non-
          disabled children as well as for those who have disabled children.
          I am not sure what she does in school, and it may be that the things
          she does in school stimulate her so that she is not frustrated or
          bored because there is always action going on in school, and when
          she gets home, she may find that she does not get that level of
          attention, which may cause your daughter to "act up" in an
          inappropriate way - (tantrums) which causes YOU to pull your hair
          out and stress yourself out, because you are taking care of her
          sister, who is younger then she is, and requires more of your
          attention.

          I am not sure of the level of severity of your daughter's CP, so I
          need to ask if she can walk or is mobile, or in a wheelchair, and
          whether she can get around the house by propelling herself, or
          whether she is unable to do this task or to communicate with speech
          or with a communication device. Frustration in communication or
          mobility may be a problem, but if she can communicate and ambulate
          in a way that you feel is appropriate, this may not be a problem per
          se, and you would have to use an appropriate deterant to let her
          know that you want her to use the appropriate means of communication
          that you KNOW she can use to get your attention. This means that if
          she can tell you what she wants without throwing a tantrum, whining,
          etc, that this is what she should be told is the "right way" to get
          your attention.

          LET US ASSUME SHE "CAN" COMMUNICATE APPROPRIATELY
          =================================================
          If this is the case:

          If she decides to throw a fit, hit, pinch, cry, screem, pout, etc,
          you simply tell her that "This behavior is not acceptable, and you
          will not get what you want by acting this way" and you remove her
          from the situation until she can calm down enough to tell you what
          she wants. The time out should be situationally appropriate, as
          well as age appropriate. Each time she acts liike this, you do the
          same thing, and remain consistant - do not reward bad behavior.

          You could also tell her that she is a "big girl" and that if she
          wants something, she needs to tell you or ask you using her "Big
          girl" voice, because you will not respond to her requests if she is
          not acting like a big girl. This does not mean that you totally
          ignore her needs, just ignore the inappropriate behavior, and soon,
          she will realize that the only way she gets what she wants is to act
          like a big girl - or you could go the other way, and ask her if she
          is a baby, and if she says "no" then you could say "Then you need to
          show me you can act/talk like a big girl does, and not like a baby,
          or you will be treated like one." I have nephews, and I know that
          the minute you say that "you are acting like a baby, and will be
          treated like one then" they will quickly decide to change thier
          attitudes.

          As far as attention goes, this can be hard, but I suggest that as
          much as possible, you spend as much time as you can with your
          daughter, and as necessary have her dad or other family members
          spend some QT with her as well - this will take *some* of the
          pressure off of you. The main problem that I see is that your
          daughter wants to have your attention, and she thinks that throwing
          tantrums will get that attention - YOU have to take control and show
          her that the "attention" she gets from bad behavior is the attention
          that she does NOT want. Her Sister is the baby, and sister has
          reason to cry and that is to let you know something is up - As the
          oldest, your daughter must communicate in an acceptable way
          (considering her disability fully) so that she can get what she
          needs and wants - do NOT be afraid of saying "NO" :) and dont be
          afraid to hear it come from your daughter, because at 3, they are
          testing the waters to see what they can do and not do for themselves.

          Good Luck ;)

          Buddy
          32/m/CP/VT






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