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Re: [Adults AMC] Not new but new...

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  • JRTowner@aol.com
    I can relate to what you are saying. I knew at about age 7 that I was di fferent to the point people didn t want me around. My second grade teacher thought
    Message 1 of 11 , Aug 1, 2004
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      I can relate to what you are saying. I knew at about age 7 that I was di
      fferent to the point people didn't want me around. My second grade teacher
      thought I belonged in Special Ed and failed me on purposed even though my answers
      were correct. It took a "Angry Parents-Teacher-Principal-School board"
      meeting to determine I was not going to be kept after school and miss my ride and
      be forced to walk 17 blocks and I was not going to get any more correct
      questions marked wrong

      The following year I tried to enroll in Brownies and was told I by the Troop
      Leader that I would be was too much trouble to have in the troop. I had
      braces to the knee on both legs at the time. My Mom started a troop for girls
      that were not wanted for one reason or another.

      After the fifth grade no one wanted to be around me. By that time girls
      were thinking about boyfriends and girlish things. I was labeled "uncool" and
      was ostracized. When we had gym and teams were chosen, I was always last. If
      I was the one doing the choosing, no one wanted to be on my team and were
      visible and verbal disappointed with having to be there.

      Junior High years were spent in and out the hospital. Senior High was a
      nightmare beginning on the first day when kids I had known all my life said I
      could not eat at their table. I was allowed to leave class a few minutes early
      to get to the lunchroom and the next class. So I was allowed to save a
      table for some kids, so I found a place to eat for the next four years. But I
      was never allowed to join them after school or in any school activities.

      Boyfriends were nonexistent as no boy would want to be seen with me. I made
      good grades (graduated 69/969) but was not offered any help by the school
      counselor in getting any grant or scholarship because people like me did not go
      to college. We got a job like at Walgreen's or Ben Franklin's and liked it.
      Yet the state of Missouri offered a full ride if only the school would have
      help me with the paper work.

      I worked since I was 16. I couldn't get a summer job like other kids. No
      one would hire me. So I went to the country and got a job a sheep herder.
      Dang, they are stupid animals.

      My folks helped me some with college but Papa's plant closed down and there
      went my source of income. I found a job and stayed for 3 years and then got
      a job with the government. I can still remember Papa sitting me down and
      telling me not to try moving from job to job as people wouldn't hire me. My
      foster brother got to be a petroleum engineer and was encouraged all along the
      way with scholarships and sororities and professor taking him under their
      wing.

      I went back to school and took a Creative Writing course. For the first
      time someone said "Job Well Done." The professor reviewed the thing we wrote
      with each student and said if I ever needed a letter of recommendation, he
      would write one for me. For the first time I felt as a good as a Normal. I
      since have been published.

      I had supervisors try firing me because I was handicapped. In fact, one
      told me she would never have hired me if she knew from my resume that I was
      handicapped. I find I take jobs as an individual and not a a team worker.

      I've been denied housing because I "might not be able to get out of a ground
      floor unit in case of a fire". I was shown apartments on the second floor
      with no hand rail. I've been denied life insurance. Once when I traveled I
      was going to be denied an airplane ticket because of being handicapped. The
      agent ask out loud if I could hold my bladder for three hours on the plane.
      What are the lavatories for? Now at the time I only walked with a limp, no
      canes, crutches or braces. A talk with his supervisor and the word LAWYER did a
      wonderful job.

      I wish there was a mentoring group for the disabled child/adult that could
      help with education, social life, employment, housing and etc. I'd work with
      the group anyway I could. I know there is a group like ADAPT that helps with
      housing bit I'm not sure of the services offered the disabled in St. Louis
      as I was never once offered any type of help.



      Denise

      Dogs are not our whole life,
      But they make our lives whole.


      [Non-text portions of this message have been removed]
    • wildwheels27@aol.com
      Wow just reading you guys stories makes me realize that i m not struggling alone. i have 2 college degrees and people refuse to hire me. i have never been
      Message 2 of 11 , Aug 1, 2004
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        Wow just reading you guys stories makes me realize that i'm not struggling
        alone. i have 2 college degrees and people refuse to hire me. i have never
        been told no on a job opportunity but i have been denied a job. i guess growing
        up i was lucky. my mom worked in the school system and had a good reputation
        that i was not denied anything. i never got special treatment. yet i know
        there was one teacher in high school that was discriminative toward me. my
        choir teacher. i was the only senior in the all girls choir. i asked him to move
        me up to the mixed choir because i know i was good. but he said no because
        he needed me in the girls choir. said i was too strong of a leader. yet i
        know its because he didn't want his mixed choir looking bad with a crippled girl
        in it..college was awesome. i was top of my class.... i graduated with
        honors. but now i'm stuck at home collecting SSI because no one will hire me with a
        disability..So now I'm going back to school. Getting my masters.let them
        tell me NO now with a masters DEGREE!!!

        Sincerely,
        Farrah


        [Non-text portions of this message have been removed]
      • John
        So, I need to clarify what my intentions with my original post. We ALL have stories about how we are treated in everyday life. The fact that I have achieved
        Message 3 of 11 , Aug 1, 2004
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          So,
          I need to clarify what my intentions with my original post. We ALL
          have stories about how we are treated in everyday life. The fact
          that I have achieved what I wanted to makes me look back and realize
          it didn't have to be as hard as it was. I am an extrovert by
          nature, always have been, which made up for some of my own
          shortcomings and forced me to GET WHAT I WANT. I am seriously
          interested in meeting others with AMC who are willing to extend
          themselves to others in a way only we can. Children with AMC (or
          any other disability) have it worse than we did. The ideal person
          is given to us through TV/ Movies/ Video which puts the AMC children
          in an emotional hole. That needs to be attacked. A plan needs to
          be formulated and I am willing to fly/ drive to people/ families/
          etc who could benefit from my experiences. It is important not to
          lose sight of the fact, while we have our own lives there are others
          who want to make one.
          Being a disabled man who owns his own business, teaches, and coaches
          able-bodied youths in basketball-- I have resources and ideas to
          start something special. I am not a believer that emailing or having
          a website on this subject will get the job done correctly. The most
          influential people in my life were people who I met. To see exactly
          how one carries themselves and stands for what they believe in.
          In conclusion, WE as AMC Adults need to come together first,
          discuss ideas, formulate a program, and put it to use. I wish we
          had a conference or something where this could take place. I think
          sometimes WE as adults can get caught up in our own support that we
          forget about children who are going through exactly what we did. We
          can help that. Any ideas?
          If you want to know more about my basketball program check out my
          Basektball site www.cmachawks.com. I was recently named the
          Southern New England Basketball Chair which is the highest level. I
          want to use this stature to help the above stated cause. I do not
          want to come off as arrogant but truth be told, I feel if I wasn't a
          little forceful I would have never acheived what I wanted to.

          Thank you and hope to hear back. If anyone wants to chat you can PM
          me jkottori (Yahoo).

          John
        • TERRY2745@AOL.COM
          John, I like the enthusiasm you have to want to help kids. That is & has been my goal also. you wrote you don’t believe in websites & emails helping, well I
          Message 4 of 11 , Aug 2, 2004
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            John,
            I like the enthusiasm you have to want to help kids. That is & has been my
            goal also.
            you wrote you don’t believe in websites & emails helping, well I definitely
            have to disagree with you there. A few years ago I made my web page & thro that
            I have met many families with amc children, Through the AMC groups I have
            also. You have to start somewhere, & that’s where I did! I made a tape of myself
            for the children, I’ve sent out over 50 around the world, for the children. Id
            love to be able to do more & hear your ideas, but please don’t slam what
            others are doing, I do feel I have helped & all the other AMC pages have too. In a
            day of internet access, I think its good to get as much info about how amc
            affects others out as possible. I would have never been able to communicate with
            people from all over the world with AMC if it wasn’t for the internet!
            Please, let me hear your ideas, I’m interested in helping the kids too
            ~Theresa Theresa's page


            [Non-text portions of this message have been removed]
          • John
            Terry, We know each other. I used to be an AOL member and we chat a few times. I am not slamming websites but for this aspect, they do not have the same
            Message 5 of 11 , Aug 2, 2004
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              Terry,
              We know each other. I used to be an AOL member and we chat a few
              times. I am not slamming websites but for this aspect, they do not
              have the same impact. I deal with kids 12 months out of the year.
              In a course of a week, I teach (in one form or another) Pre-K to
              12th grade. I have asked different age levels about people who
              impact their lives and have received that meeting in person or
              hearing speeches as the MOST effective. What you are doing is great
              and people need that. I understand your point and do not mean to
              take away from that. This is the reason, I posted here and not in
              Avenues ETC... This is a group for Adults. We hold the keys. We
              can make a new road in dealing with these issues. We can help
              parents try to understand medical/ physical issues but it is very
              hard to get them to understand what a child goes/ will go through
              emotionally and mentally. Only WE can understand that. That is my
              concern and my goal. I am a bit of a perfectionist when it comes to
              things like this. The core of what I would like to happen is for
              children to physically see us carry ourselves. To see us as
              energetic individuals who will not give into the "you will live a
              certain way because you are told to." This has great impact on how
              they feel mentally and emotionally. Obviously, different age levels
              demand different needs and things need to be organized in a manner
              which suits each specific level. Meaning, High School aged children
              deal with different issues than Primary Levels.
              I understand for some having a conference would be a tough task but
              we have to try. A non-for-profit organization can be created to
              help with any costs. While, I do not need any assistance in this
              aspect, I would work my tail off helping others meet any kind of
              goal. If there is ANYONE who would feel a conference of some sort
              (a weekend, day, an hour) will benefit us then please have an open
              mind. I am always open to ideas and do not want to lead alone.
              That is why I am asking for help.

              John
            • Andy DeSanctis
              Hey John - I think you are missing the point of the website. The problems that so many of us face in the areas of support is that AMC is very rare, and
              Message 6 of 11 , Aug 2, 2004
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                Hey John -

                I think you are missing the point of the website. The
                problems that so many of us face in the areas of
                support is that AMC is very rare, and therefore, those
                who have it are spread out all over the country. On
                top of the fact that many of us are unable to travel
                as easily as others - getting together is is even more
                of a rarity. The website solves this problem.

                I think you have the right idea in presenting children
                with AMC with rolemodels who have AMC - but I also
                think that's being narrow in scope. Kids with
                disabilities need to know how others who are disabled,
                regardless of the condition, handle themselves in
                society and most of all, I think, need to know how to
                ask for help. I think sometimes, one can be so hell
                bent on "doing it myself" that the failure that can
                accompany becomes counterproductive -especially on the
                mind of a teenager trying to find his / her place in
                the world. Ultimately, is doesn't matter if one has
                cerebral palsy, AMC, spinabiphita, whatever - the
                difficulties assimilating are the same.

                I'm all for educating parents on how to deal and help
                their kids deal, but I'm more for implementing
                psychological counseling along with PT / OT. This is
                one of the few physical ailments, depending on
                severity of course, where great improvements can be
                made and the mental health of the child should not be
                ignored.

                I'm wary of disseminating specific physical / medical
                issues to parents. Unfortunaly, this disease has so
                many variations / properties from person to person
                that the best advice to give new parents is to dig
                their claws into the medical community, and force a
                case specific understanding of what's going on with
                their child.

                Just as a background, I 've got AMC, but in a mild
                case. Never had surguries - played sports in High
                School and College and skied competatively through
                both. I very rarely post (although I do check back
                frequently) because in a way i guess I feel guilty. My
                problems are of the lesser extent, but you guys are
                inspirational for sure, and John's posts about
                organizing awareness among different age groups /
                comminuties gets me going.

                Andy



                --- John <jkottori@...> wrote:

                > Terry,
                > We know each other. I used to be an AOL member and
                > we chat a few
                > times. I am not slamming websites but for this
                > aspect, they do not
                > have the same impact. I deal with kids 12 months out
                > of the year.
                > In a course of a week, I teach (in one form or
                > another) Pre-K to
                > 12th grade. I have asked different age levels about
                > people who
                > impact their lives and have received that meeting in
                > person or
                > hearing speeches as the MOST effective. What you
                > are doing is great
                > and people need that. I understand your point and
                > do not mean to
                > take away from that. This is the reason, I posted
                > here and not in
                > Avenues ETC... This is a group for Adults. We hold
                > the keys. We
                > can make a new road in dealing with these issues.
                > We can help
                > parents try to understand medical/ physical issues
                > but it is very
                > hard to get them to understand what a child goes/
                > will go through
                > emotionally and mentally. Only WE can understand
                > that. That is my
                > concern and my goal. I am a bit of a perfectionist
                > when it comes to
                > things like this. The core of what I would like to
                > happen is for
                > children to physically see us carry ourselves. To
                > see us as
                > energetic individuals who will not give into the
                > "you will live a
                > certain way because you are told to." This has
                > great impact on how
                > they feel mentally and emotionally. Obviously,
                > different age levels
                > demand different needs and things need to be
                > organized in a manner
                > which suits each specific level. Meaning, High
                > School aged children
                > deal with different issues than Primary Levels.
                > I understand for some having a conference would be a
                > tough task but
                > we have to try. A non-for-profit organization can
                > be created to
                > help with any costs. While, I do not need any
                > assistance in this
                > aspect, I would work my tail off helping others meet
                > any kind of
                > goal. If there is ANYONE who would feel a
                > conference of some sort
                > (a weekend, day, an hour) will benefit us then
                > please have an open
                > mind. I am always open to ideas and do not want to
                > lead alone.
                > That is why I am asking for help.
                >
                > John
                >
                >





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              • TERRY2745@AOL.COM
                yea John, I remember talking with you! PLEASE let me know about anything I can do to be involved with what you are doing! ~Theresa Theresa s page [Non-text
                Message 7 of 11 , Aug 2, 2004
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                  yea John, I remember talking with you!
                  PLEASE let me know about anything I can do to be involved with what you are
                  doing!
                  ~Theresa Theresa's page


                  [Non-text portions of this message have been removed]
                • TERRY2745@AOL.COM
                  thanks 4 backin me up Andy! :) I am a person who tries to support kids with any disability or not!! Kids are the future....... ~Theresa Theresa s page
                  Message 8 of 11 , Aug 2, 2004
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                    thanks 4 backin me up Andy! :)
                    I am a person who tries to support kids with any disability or not!!
                    Kids are the future.......
                    ~Theresa Theresa's page


                    [Non-text portions of this message have been removed]
                  • azah mohamad
                    John wrote: So, I need to clarify what my intentions with my original post. We ALL have stories about how we are treated in everyday
                    Message 9 of 11 , Aug 6, 2004
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                      John <jkottori@...> wrote: So,
                      I need to clarify what my intentions with my original post. We ALL
                      have stories about how we are treated in everyday life. The fact
                      that I have achieved what I wanted to makes me look back and realize
                      it didn't have to be as hard as it was. I am an extrovert by
                      nature, always have been, which made up for some of my own
                      shortcomings and forced me to GET WHAT I WANT. I am seriously
                      interested in meeting others with AMC who are willing to extend
                      themselves to others in a way only we can. Children with AMC (or
                      any other disability) have it worse than we did. The ideal person
                      is given to us through TV/ Movies/ Video which puts the AMC children
                      in an emotional hole. That needs to be attacked. A plan needs to
                      be formulated and I am willing to fly/ drive to people/ families/
                      etc who could benefit from my experiences. It is important not to
                      lose sight of the fact, while we have our own lives there are others
                      who want to make one.
                      Being a disabled man who owns his own business, teaches, and coaches
                      able-bodied youths in basketball-- I have resources and ideas to
                      start something special. I am not a believer that emailing or having
                      a website on this subject will get the job done correctly. The most
                      influential people in my life were people who I met. To see exactly
                      how one carries themselves and stands for what they believe in.
                      In conclusion, WE as AMC Adults need to come together first,
                      discuss ideas, formulate a program, and put it to use. I wish we
                      had a conference or something where this could take place. I think
                      sometimes WE as adults can get caught up in our own support that we
                      forget about children who are going through exactly what we did. We
                      can help that. Any ideas?
                      If you want to know more about my basketball program check out my
                      Basektball site www.cmachawks.com. I was recently named the
                      Southern New England Basketball Chair which is the highest level. I
                      want to use this stature to help the above stated cause. I do not
                      want to come off as arrogant but truth be told, I feel if I wasn't a
                      little forceful I would have never acheived what I wanted to.

                      Thank you and hope to hear back. If anyone wants to chat you can PM
                      me jkottori (Yahoo).

                      John


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                      Dear John,

                      As a mother who has a child suffering from aMC, I agree with you comment. In my country Malaysia, not everybody knows what AMC is...everytime they ask about my son, Azrul's condition, we have to explain in detail about his condition. Futhermore, at this moment in time, we are having problems sending Azrul to school, he's six years old this year.

                      He is still unable to walk but he goes to pre school evrey day learning to write and read. We are still trying to find enough money in order to operate his hands and do a second operation on his legs. He has difficulty walking becoz his right leg is a bit longer than the left. Its very difficult to seek funds for operations in my country especially if the operation is to be done in a private hospital.Wr need to find as least US$15,000 for his operation.

                      Our problem with Azrul now is he is getting lazy and does'nt want to do much exercise. His means of transport at home is a trycycle which is getting smaller as he is growing bigger in size. As parents we don't exactly know how to encourage him to learn to walk or use his hands to feed himself. There are times when I lose hope in ever seeing him walk or become dependent on himself in future but I still hope he will change for the better.

                      P/s : I've attached a picture of Azrul for you to see.

                      Yours faithfully,

                      Azah






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                    • JRTowner@aol.com
                      I m willing to do something positive in the AMC/disabled kids lives. How about the first step being a chat amongst ourselves to discuss what we can do,
                      Message 10 of 11 , Aug 7, 2004
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                        I'm willing to do something positive in the AMC/disabled kids lives. How
                        about the first step being a chat amongst ourselves to discuss what we can do,
                        where is it going to take place, how is going to get done.

                        Since logistics is a problem, I'll make a suggestion that we sign on to
                        yahoo, go to this groups home page, and use the chat room to start. What's a
                        good time to start? If you list a time be sure to include the tie zone, like
                        if it 7 PM Eastern or 7 PM Central. What's good for everybody?
                        Denise

                        Dogs are not our whole life,
                        But they make our lives whole.


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