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  • jane jaquias-ross
    Hi I m new to the group. I m a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is using an electric chair and he has very minimal movement in
    Message 1 of 21 , Apr 1 11:02 PM
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      Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is using an electric chair and he has very minimal movement in his arms and fingers, so I have to feed him and do his personal hygeine and care. Is there someone out there who was very dependent just like my son? And if so then tell me what usually happens when someone like him gets too heavy for me to carry... what will I do?

      Also, My son is in the 10th grade now and he has an aide with him at school to help him out. He helps take notes, gets the books out of his backpack, feeds him etc.... I was wondering if anyone out there is going through college right now and if so what type of assistance do they receive from the disabilities assistance centers on campus.

      thanks,
      I'm really excited about this support group and I'm looking forward to getting some good information from everyone.

      Jane


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    • Melissa Snyder
      Hi, I m new to the group as well. My name is Melissa and i m 21yrs old and was a college student at Mars Hill College in NC. As far as college goes, my advice
      Message 2 of 21 , Apr 2 9:38 AM
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        Hi, I'm new to the group as well. My name is Melissa and i'm 21yrs old and was a college student at Mars Hill College in NC. As far as college goes, my advice would be for him to attend a public college, because if they get federal funding they are required by law to provide someone to help RJ with his needs, whereas at a private institution it is very difficult. i'm not sure if the have the same serives up there as they do in the south but if there is you should definitly open a case with the Dept. of Vocational Rehabilitation...they offer many services that can help. Good luck.
        -melissa

        jane jaquias-ross <janecrisol@...> wrote:
        Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is using an electric chair and he has very minimal movement in his arms and fingers, so I have to feed him and do his personal hygeine and care. Is there someone out there who was very dependent just like my son? And if so then tell me what usually happens when someone like him gets too heavy for me to carry... what will I do?

        Also, My son is in the 10th grade now and he has an aide with him at school to help him out. He helps take notes, gets the books out of his backpack, feeds him etc.... I was wondering if anyone out there is going through college right now and if so what type of assistance do they receive from the disabilities assistance centers on campus.

        thanks,
        I'm really excited about this support group and I'm looking forward to getting some good information from everyone.

        Jane

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      • Betty Hicks
        Jane, That happens to be my middle name. Anyways, I’m 42 and I had to and still do, need help with my personal care as a kid and although I weighed pretty
        Message 3 of 21 , Apr 2 9:38 AM
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          Jane,

          That happens to be my middle name. Anyways, I�m 42 and I had to and still
          do, need help with my personal care as a kid and although I weighed pretty
          light, 75lbs. There were times when it felt like I weighed a ton of bricks
          to my mom on some days. Has your son made any comments about moving out on
          his own, that way he would have people come in and help him. Be much easier
          for you as you get older and him as he gets older and no matter what, the
          weight creeps up on him.

          When I turned 18 I got my own apt. and I hired people to come in to help me,
          granted I didn�t need to be fed but I did need help with everything else.
          Bathing, dressing, housecleaning, etc. I had a person living with me
          besides another person coming in to help me.

          Not sure how California does this, but here in Wisconsin each county has
          COP/CIPP programs that a person signs up for to get funding to pay for
          attendants. Now I�m sure there are waiting lists, always seems to be when
          you need something. There was one when I signed up for it and that was back
          in 1982, wow, just realized that was 25 years ago. Now I feel old. Lol.
          Anyways, the wait was short for me, mainly because I kept calling
          practically every week to see where my name was.

          For college, I never really used the services that they have now, mainly
          because I am able to write myself, at that time, the only services they
          offered was writers for people that needed help with their exams, otherwise
          they would make the student find a note taker themselves. I�m sure it�s
          totally different now than when I went to college. Just a question, or a
          thought, is RJ thinking of going to a major university or a community
          college? The treatment is different between the two I think. I went to
          community college and it was easier.

          Hope this helps,

          Betty


          --
          No virus found in this outgoing message.
          Checked by AVG Free Edition.
          Version: 7.5.446 / Virus Database: 268.18.18/734 - Release Date: 3/26/2007
          2:31 PM



          [Non-text portions of this message have been removed]
        • Casey Jones
          Hi Jane, When I went to college a few years ago there were ample services for the disabled. You will need to call the college he wants to go to and set up a
          Message 4 of 21 , Apr 2 10:53 AM
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            Hi Jane,

            When I went to college a few years ago there were ample services for the disabled. You will need to call the college he wants to go to and set up a meeting with disability services counselor. Some of the services I know were offered when I was in school are a note taker/scribe, tape recorders were allowed, extra time was alotted for tests and you could probably get a personal care assistant. His best bet is to go to a community college or a university that has a nursing dept. You can often find a nursing student willing to do the job for minimal money.

            While I was in school I nearly had an accident because I had to go to the restroom very bad and none of my friends were around. Luckily a classmate of mine saw me in distress and offered assistance since she was a nursing student.

            There are options out there for your son. If he can use the computer with assistive devices such as Dragon Dictate or other verbal command software then he could possibly try an online college. Many universities are offering their same programs online.

            Hope this helps some and good luck. Tell him that he will have every opportunity to go to college should he want to go!

            Casey
            http://www.cljdesign.com

            jane jaquias-ross <janecrisol@...> wrote: Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is using an electric chair and he has very minimal movement in his arms and fingers, so I have to feed him and do his personal hygeine and care. Is there someone out there who was very dependent just like my son? And if so then tell me what usually happens when someone like him gets too heavy for me to carry... what will I do?

            Also, My son is in the 10th grade now and he has an aide with him at school to help him out. He helps take notes, gets the books out of his backpack, feeds him etc.... I was wondering if anyone out there is going through college right now and if so what type of assistance do they receive from the disabilities assistance centers on campus.

            thanks,
            I'm really excited about this support group and I'm looking forward to getting some good information from everyone.

            Jane

            ---------------------------------
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            Casey Leeann Jones
            Independent Beauty Consultant
            Cell: (713) 516-0171
            Home: (281) 448-2426
            caseybelle@...
            www.marykay.com/caseybelle





            [Non-text portions of this message have been removed]
          • TUCMUM@aol.com
            In a message dated 4/2/2007 9:48:58 A.M. Pacific Standard Time, missbetty37@ameritech.net writes: Not sure how California does this, but here in Wisconsin
            Message 5 of 21 , Apr 2 3:10 PM
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              In a message dated 4/2/2007 9:48:58 A.M. Pacific Standard Time,
              missbetty37@... writes:

              Not sure how California does this, but here in Wisconsin each county has
              COP/CIPP programs that a person signs up for to get funding to pay for
              attendants. Now I’m sure there are waiting lists, always seems to be when
              you need something. There was one when I signed up for it and that was back
              in 1982, wow, just realized that was 25 years ago. Now I feel old. Lol.
              Anyways, the wait was short for me, mainly because I kept calling
              practically every week to see where my name was.



              In Ca. there is a program that is called IHSS (In Home Support Services) I
              get it for my son that is only nine but it last a life time and they pay for
              personal care. He is aloud to hire anyone he wants to get paid to do the work
              they give him hours for.
              Traci (Tuckers mom from Central Ca.)



              ************************************** See what's free at http://www.aol.com


              [Non-text portions of this message have been removed]
            • janecrisol
              Hey Betty, Thanks for your response. Yeah for now I m able to carry him.. but let me tell you I can tell every year he is definitely getting heavier. So... you
              Message 6 of 21 , Apr 2 3:33 PM
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                Hey Betty,
                Thanks for your response. Yeah for now I'm able to carry him.. but
                let me tell you I can tell every year he is definitely getting
                heavier. So... you were able to get outside assistance for living on
                your own... Hmmmm... that's really interesting.. I've never even
                thought that would be a possibility for him since he is so dependent
                on us for care. I will ask his therapy unit for any info that they
                may have. What does COP and CIPP stand for? Can I ask what was your
                major in college and what do you do now for a living? I'm guessing my
                son is not a mild case since he cannot walk and he has very minimal
                use of his hands and arms. He basically writes using a pen or pencil
                in his mouth. RJ is very smart and he would like to be a corporate
                lawyer. His first choice is USC, UCLA, Chapman University, ...
                Although now I've heard from a few people that a private setting may
                not be the best choice since they wouldn't offer as much support.
                I'm definitely going to be looking more into this.

                thanks again for all your input.
                Jane


                - In amc_adults@yahoogroups.com, "Betty Hicks" <missbetty37@...>
                wrote:
                >
                > Jane,
                >
                > That happens to be my middle name. Anyways, I'm 42 and I had to
                and still
                > do, need help with my personal care as a kid and although I weighed
                pretty
                > light, 75lbs. There were times when it felt like I weighed a ton
                of bricks
                > to my mom on some days. Has your son made any comments about
                moving out on
                > his own, that way he would have people come in and help him. Be
                much easier
                > for you as you get older and him as he gets older and no matter
                what, the
                > weight creeps up on him.
                >
                > When I turned 18 I got my own apt. and I hired people to come in to
                help me,
                > granted I didn't need to be fed but I did need help with everything
                else.
                > Bathing, dressing, housecleaning, etc. I had a person living with
                me
                > besides another person coming in to help me.
                >
                > Not sure how California does this, but here in Wisconsin each
                county has
                > COP/CIPP programs that a person signs up for to get funding to pay
                for
                > attendants. Now I'm sure there are waiting lists, always seems to
                be when
                > you need something. There was one when I signed up for it and that
                was back
                > in 1982, wow, just realized that was 25 years ago. Now I feel
                old. Lol.
                > Anyways, the wait was short for me, mainly because I kept calling
                > practically every week to see where my name was.
                >
                > For college, I never really used the services that they have now,
                mainly
                > because I am able to write myself, at that time, the only services
                they
                > offered was writers for people that needed help with their exams,
                otherwise
                > they would make the student find a note taker themselves. I'm sure
                it's
                > totally different now than when I went to college. Just a
                question, or a
                > thought, is RJ thinking of going to a major university or a
                community
                > college? The treatment is different between the two I think. I
                went to
                > community college and it was easier.
                >
                > Hope this helps,
                >
                > Betty
                >
                >
                > --
                > No virus found in this outgoing message.
                > Checked by AVG Free Edition.
                > Version: 7.5.446 / Virus Database: 268.18.18/734 - Release Date:
                3/26/2007
                > 2:31 PM
                >
                >
                >
                > [Non-text portions of this message have been removed]
                >
              • janecrisol
                Hi Casey I will definitely have my son start looking into specifically what each University can provide for him. He is basically very dependent and his limbs
                Message 7 of 21 , Apr 2 3:38 PM
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                  Hi Casey
                  I will definitely have my son start looking into specifically what
                  each University can provide for him. He is basically very dependent
                  and his limbs are all affected...so I'm starting to look into other
                  support groups such as quadraplegic groups.

                  Do you use Dragon Dictate regularly? Is is pretty simple to use? RJ
                  should be getting a new laptop soon which was provided by the school
                  district. Let me know more about that software.

                  thanks
                  jane


                  --- In amc_adults@yahoogroups.com, Casey Jones <texascowgirl2426@...>
                  wrote:
                  >
                  > Hi Jane,
                  >
                  > When I went to college a few years ago there were ample services
                  for the disabled. You will need to call the college he wants to go to
                  and set up a meeting with disability services counselor. Some of the
                  services I know were offered when I was in school are a note
                  taker/scribe, tape recorders were allowed, extra time was alotted for
                  tests and you could probably get a personal care assistant. His best
                  bet is to go to a community college or a university that has a
                  nursing dept. You can often find a nursing student willing to do the
                  job for minimal money.
                  >
                  > While I was in school I nearly had an accident because I had to
                  go to the restroom very bad and none of my friends were around.
                  Luckily a classmate of mine saw me in distress and offered
                  assistance since she was a nursing student.
                  >
                  > There are options out there for your son. If he can use the
                  computer with assistive devices such as Dragon Dictate or other
                  verbal command software then he could possibly try an online college.
                  Many universities are offering their same programs online.
                  >
                  > Hope this helps some and good luck. Tell him that he will have
                  every opportunity to go to college should he want to go!
                  >
                  > Casey
                  > http://www.cljdesign.com
                  >
                  > jane jaquias-ross <janecrisol@...>
                  wrote: Hi I'm new to the group. I'm
                  a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is
                  using an electric chair and he has very minimal movement in his arms
                  and fingers, so I have to feed him and do his personal hygeine and
                  care. Is there someone out there who was very dependent just like my
                  son? And if so then tell me what usually happens when someone like
                  him gets too heavy for me to carry... what will I do?
                  >
                  > Also, My son is in the 10th grade now and he has an aide with
                  him at school to help him out. He helps take notes, gets the books
                  out of his backpack, feeds him etc.... I was wondering if anyone out
                  there is going through college right now and if so what type of
                  assistance do they receive from the disabilities assistance centers
                  on campus.
                  >
                  > thanks,
                  > I'm really excited about this support group and I'm looking
                  forward to getting some good information from everyone.
                  >
                  > Jane
                  >
                  > ---------------------------------
                  > Expecting? Get great news right away with email Auto-Check.
                  > Try the Yahoo! Mail Beta.
                  >
                  > [Non-text portions of this message have been removed]
                  >
                  >
                  >
                  >
                  >
                  >
                  > Casey Leeann Jones
                  > Independent Beauty Consultant
                  > Cell: (713) 516-0171
                  > Home: (281) 448-2426
                  > caseybelle@...
                  > www.marykay.com/caseybelle
                  >
                  >
                  >
                  >
                  >
                  > [Non-text portions of this message have been removed]
                  >
                • janecrisol
                  Hi Traci, I m confused.. your email started out saying out in Wisconsin but in the end you signed off saying Traci in Centrail California.. Are you in
                  Message 8 of 21 , Apr 2 3:53 PM
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                    Hi Traci,
                    I'm confused.. your email started out saying out in Wisconsin but in
                    the end you signed off saying Traci in Centrail California.. Are you
                    in California? if so what part? And you said .. it's called In home
                    support services? Do you have a number that I can call for that? How
                    did you hear about it? I'm so surprise that a therapist hasn't told
                    me about anything like that.

                    thanks---


                    In amc_adults@yahoogroups.com, TUCMUM@... wrote:
                    >
                    >
                    > In a message dated 4/2/2007 9:48:58 A.M. Pacific Standard Time,
                    > missbetty37@... writes:
                    >
                    > Not sure how California does this, but here in Wisconsin each
                    county has
                    > COP/CIPP programs that a person signs up for to get funding to
                    pay for
                    > attendants. Now I’m sure there are waiting lists, always seems
                    to be when
                    > you need something. There was one when I signed up for it and
                    that was back
                    > in 1982, wow, just realized that was 25 years ago. Now I feel
                    old. Lol.
                    > Anyways, the wait was short for me, mainly because I kept calling
                    > practically every week to see where my name was.
                    >
                    >
                    >
                    > In Ca. there is a program that is called IHSS (In Home Support
                    Services) I
                    > get it for my son that is only nine but it last a life time and
                    they pay for
                    > personal care. He is aloud to hire anyone he wants to get paid to
                    do the work
                    > they give him hours for.
                    > Traci (Tuckers mom from Central Ca.)
                    >
                    >
                    >
                    > ************************************** See what's free at
                    http://www.aol.com
                    >
                    >
                    > [Non-text portions of this message have been removed]
                    >
                  • TUCMUM@aol.com
                    I started my email out by adding to what Betty had said my Highlighting what Betty had already said. Yes I am in Ca. I live in Tulare near Fresno. Traci
                    Message 9 of 21 , Apr 2 4:03 PM
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                      I started my email out by adding to what Betty had said my Highlighting
                      what Betty had already said. Yes I am in Ca. I live in Tulare near Fresno.
                      Traci



                      ************************************** See what's free at http://www.aol.com


                      [Non-text portions of this message have been removed]
                    • TUCMUM@aol.com
                      Sorry I sent to soon. Each county had a different number, I will call and see if they can give me the one for what is it Long Beach? Or maybe I will be able to
                      Message 10 of 21 , Apr 2 4:05 PM
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                        Sorry I sent to soon. Each county had a different number, I will call and
                        see if they can give me the one for what is it Long Beach? Or maybe I will be
                        able to look it up on line?
                        Traci



                        ************************************** See what's free at http://www.aol.com


                        [Non-text portions of this message have been removed]
                      • Kenzie Harrison
                        Hi Jane, I m Kenzie I am 18 and I am going to graduate high shool in May. I had an aide at school and use a scooter/electric chair.I am not quite as dependent
                        Message 11 of 21 , Apr 2 9:31 PM
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                          Hi Jane,
                          I'm Kenzie I am 18 and I am going to graduate high shool in May. I had an aide at school and use a scooter/electric chair.I am not quite as dependent as your son because I am mainly affected in my neck because I can't sit upright and hold my head up. I guess your son and I do have some things in common. My mom also still has to wash my hair for me because I am unable to hold my arms up high enough to reach the top of my head. My mom tells me that I will be able to do it myself because god will help me. It always reassures me however when I couldn't do something the normal I always find an alternative.
                          I am also taking two college classes and have found that the disability service office is very helpful they helped me find a table that I could pull my scooter up to that was low enough for my height.
                          My mom also used to carry me up until I was in Jr. High and the only reason she stopped then is because she had back problems. I hope this helps.
                          Kenzie in IL

                          jane jaquias-ross <janecrisol@...> wrote:
                          Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live in Long Beach. RJ is using an electric chair and he has very minimal movement in his arms and fingers, so I have to feed him and do his personal hygeine and care. Is there someone out there who was very dependent just like my son? And if so then tell me what usually happens when someone like him gets too heavy for me to carry... what will I do?

                          Also, My son is in the 10th grade now and he has an aide with him at school to help him out. He helps take notes, gets the books out of his backpack, feeds him etc.... I was wondering if anyone out there is going through college right now and if so what type of assistance do they receive from the disabilities assistance centers on campus.

                          thanks,
                          I'm really excited about this support group and I'm looking forward to getting some good information from everyone.

                          Jane

                          ---------------------------------
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                        • Allyson
                          I didn t need any personal care help in school, but i did start actually at a non public college. I was very nicce for me at the time because it was small,
                          Message 12 of 21 , Apr 2 11:47 PM
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                            I didn't need any personal care help in school, but i
                            did start actually at a non public college. I was very
                            nicce for me at the time because it was small,
                            actually only one building to get around. I actually
                            got more assistence in this college then i did in the
                            public college i graduated from. At the private
                            college i had much more relyable note takers. only
                            stayed in private college for a year, then move out
                            and went away to college (needed a little freedom
                            being middle child in a family of 5 kids). Ended up at
                            the local public college after i ran out of money.
                            Most state have some sort of rehab services, if your
                            son picks a private college rehab services will work
                            with the college or hire private help for your son.
                            There goal is to get you son through any type of
                            training needed and assist in him being able to
                            support and work in society.

                            I got hooked up with rehab services when i was about
                            16 years old, however due to some learning issues and
                            not scoreing high on my ACT they did not help me pay
                            for school so i work summers, finally Graduated in
                            december and they are helping fund my 1st car yay,
                            which trust me i'd happly pay for college over the
                            insane cost of the crap, i mean equipment in my car.

                            Ally
                            --- janecrisol <janecrisol@...> wrote:

                            > Hey Betty,
                            > Thanks for your response. Yeah for now I'm able to
                            > carry him.. but
                            > let me tell you I can tell every year he is
                            > definitely getting
                            > heavier. So... you were able to get outside
                            > assistance for living on
                            > your own... Hmmmm... that's really interesting..
                            > I've never even
                            > thought that would be a possibility for him since he
                            > is so dependent
                            > on us for care. I will ask his therapy unit for any
                            > info that they
                            > may have. What does COP and CIPP stand for? Can I
                            > ask what was your
                            > major in college and what do you do now for a
                            > living? I'm guessing my
                            > son is not a mild case since he cannot walk and he
                            > has very minimal
                            > use of his hands and arms. He basically writes using
                            > a pen or pencil
                            > in his mouth. RJ is very smart and he would like to
                            > be a corporate
                            > lawyer. His first choice is USC, UCLA, Chapman
                            > University, ...
                            > Although now I've heard from a few people that a
                            > private setting may
                            > not be the best choice since they wouldn't offer as
                            > much support.
                            > I'm definitely going to be looking more into this.
                            >
                            > thanks again for all your input.
                            > Jane
                            >
                            >
                            > - In amc_adults@yahoogroups.com, "Betty Hicks"
                            > <missbetty37@...>
                            > wrote:
                            > >
                            > > Jane,
                            > >
                            > > That happens to be my middle name. Anyways, I'm
                            > 42 and I had to
                            > and still
                            > > do, need help with my personal care as a kid and
                            > although I weighed
                            > pretty
                            > > light, 75lbs. There were times when it felt like
                            > I weighed a ton
                            > of bricks
                            > > to my mom on some days. Has your son made any
                            > comments about
                            > moving out on
                            > > his own, that way he would have people come in and
                            > help him. Be
                            > much easier
                            > > for you as you get older and him as he gets older
                            > and no matter
                            > what, the
                            > > weight creeps up on him.
                            > >
                            > > When I turned 18 I got my own apt. and I hired
                            > people to come in to
                            > help me,
                            > > granted I didn't need to be fed but I did need
                            > help with everything
                            > else.
                            > > Bathing, dressing, housecleaning, etc. I had a
                            > person living with
                            > me
                            > > besides another person coming in to help me.
                            > >
                            > > Not sure how California does this, but here in
                            > Wisconsin each
                            > county has
                            > > COP/CIPP programs that a person signs up for to
                            > get funding to pay
                            > for
                            > > attendants. Now I'm sure there are waiting lists,
                            > always seems to
                            > be when
                            > > you need something. There was one when I signed
                            > up for it and that
                            > was back
                            > > in 1982, wow, just realized that was 25 years ago.
                            > Now I feel
                            > old. Lol.
                            > > Anyways, the wait was short for me, mainly because
                            > I kept calling
                            > > practically every week to see where my name was.
                            > >
                            > > For college, I never really used the services that
                            > they have now,
                            > mainly
                            > > because I am able to write myself, at that time,
                            > the only services
                            > they
                            > > offered was writers for people that needed help
                            > with their exams,
                            > otherwise
                            > > they would make the student find a note taker
                            > themselves. I'm sure
                            > it's
                            > > totally different now than when I went to college.
                            > Just a
                            > question, or a
                            > > thought, is RJ thinking of going to a major
                            > university or a
                            > community
                            > > college? The treatment is different between the
                            > two I think. I
                            > went to
                            > > community college and it was easier.
                            > >
                            > > Hope this helps,
                            > >
                            > > Betty
                            > >
                            > >
                            > > --
                            > > No virus found in this outgoing message.
                            > > Checked by AVG Free Edition.
                            > > Version: 7.5.446 / Virus Database: 268.18.18/734 -
                            > Release Date:
                            > 3/26/2007
                            > > 2:31 PM
                            > >
                            > >
                            > >
                            > > [Non-text portions of this message have been
                            > removed]
                            > >
                            >
                            >
                            >




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                          • Allyson
                            Actually its very very easy to use and 1000% improved. I ve been working with people train them in the use of this software for about 6 years now, which is one
                            Message 13 of 21 , Apr 2 11:51 PM
                            • 0 Attachment
                              Actually its very very easy to use and 1000% improved.
                              I've been working with people train them in the use of
                              this software for about 6 years now, which is one way
                              i paid for school. If he gets it and has any trouble
                              feel free to email me.

                              allycat70001@...


                              --- janecrisol <janecrisol@...> wrote:

                              > Hi Casey
                              > I will definitely have my son start looking into
                              > specifically what
                              > each University can provide for him. He is basically
                              > very dependent
                              > and his limbs are all affected...so I'm starting to
                              > look into other
                              > support groups such as quadraplegic groups.
                              >
                              > Do you use Dragon Dictate regularly? Is is pretty
                              > simple to use? RJ
                              > should be getting a new laptop soon which was
                              > provided by the school
                              > district. Let me know more about that software.
                              >
                              > thanks
                              > jane
                              >
                              >
                              > --- In amc_adults@yahoogroups.com, Casey Jones
                              > <texascowgirl2426@...>
                              > wrote:
                              > >
                              > > Hi Jane,
                              > >
                              > > When I went to college a few years ago there were
                              > ample services
                              > for the disabled. You will need to call the college
                              > he wants to go to
                              > and set up a meeting with disability services
                              > counselor. Some of the
                              > services I know were offered when I was in school
                              > are a note
                              > taker/scribe, tape recorders were allowed, extra
                              > time was alotted for
                              > tests and you could probably get a personal care
                              > assistant. His best
                              > bet is to go to a community college or a university
                              > that has a
                              > nursing dept. You can often find a nursing student
                              > willing to do the
                              > job for minimal money.
                              > >
                              > > While I was in school I nearly had an accident
                              > because I had to
                              > go to the restroom very bad and none of my friends
                              > were around.
                              > Luckily a classmate of mine saw me in distress and
                              > offered
                              > assistance since she was a nursing student.
                              > >
                              > > There are options out there for your son. If he
                              > can use the
                              > computer with assistive devices such as Dragon
                              > Dictate or other
                              > verbal command software then he could possibly try
                              > an online college.
                              > Many universities are offering their same programs
                              > online.
                              > >
                              > > Hope this helps some and good luck. Tell him that
                              > he will have
                              > every opportunity to go to college should he want to
                              > go!
                              > >
                              > > Casey
                              > > http://www.cljdesign.com
                              > >
                              > > jane jaquias-ross <janecrisol@...>
                              > wrote: Hi I'm new
                              > to the group. I'm
                              > a mother of a 15 year old boy (RJ) and we live in
                              > Long Beach. RJ is
                              > using an electric chair and he has very minimal
                              > movement in his arms
                              > and fingers, so I have to feed him and do his
                              > personal hygeine and
                              > care. Is there someone out there who was very
                              > dependent just like my
                              > son? And if so then tell me what usually happens
                              > when someone like
                              > him gets too heavy for me to carry... what will I
                              > do?
                              > >
                              > > Also, My son is in the 10th grade now and he
                              > has an aide with
                              > him at school to help him out. He helps take notes,
                              > gets the books
                              > out of his backpack, feeds him etc.... I was
                              > wondering if anyone out
                              > there is going through college right now and if so
                              > what type of
                              > assistance do they receive from the disabilities
                              > assistance centers
                              > on campus.
                              > >
                              > > thanks,
                              > > I'm really excited about this support group and
                              > I'm looking
                              > forward to getting some good information from
                              > everyone.
                              > >
                              > > Jane
                              > >
                              > > ---------------------------------
                              > > Expecting? Get great news right away with email
                              > Auto-Check.
                              > > Try the Yahoo! Mail Beta.
                              > >
                              > > [Non-text portions of this message have been
                              > removed]
                              > >
                              > >
                              > >
                              > >
                              > >
                              > >
                              > > Casey Leeann Jones
                              > > Independent Beauty Consultant
                              > > Cell: (713) 516-0171
                              > > Home: (281) 448-2426
                              > > caseybelle@...
                              > > www.marykay.com/caseybelle
                              > >
                              > >
                              > >
                              > >
                              > >
                              > > [Non-text portions of this message have been
                              > removed]
                              > >
                              >
                              >
                              >




                              ____________________________________________________________________________________
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                            • tracey_schalk
                              Hi Jane, Welcome to the group! I m 19 and I ve been in college for 1 1/2 years and disability services is amazing in comparison to the IEP process in high
                              Message 14 of 21 , Apr 3 1:54 PM
                              • 0 Attachment
                                Hi Jane,

                                Welcome to the group! I'm 19 and I've been in college for 1 1/2 years and disability
                                services is amazing in comparison to the IEP process in high school. I go to a public
                                univeristy but I don't think that private colleges are allowed to not be ADA accesible when
                                they build new buildings. I know a girl at Harvard who is a paraplegic and they had to
                                provide an accessible dorm room which required reconstruction. Any type of
                                accomodations your son is getting at the high school level he should be able to get at the
                                college level. Word of advice when he is a senior, have the school do another multifactored
                                evaluation and write a whole new IEP. I had another MFE done my senior year and from
                                what I've heard if you don't and the college wants a more current one you can be charged
                                for it to be carried out but they don't charge for accomodations or anything. Its really
                                rather simple to get the accomodations just take his IEP and MFE into the office of
                                disability services before he starts classes and they'll make sure he gets what he needs to
                                be educationally successful. If your son will need personal Care attendants while there, get
                                involved with your local department of vocational rehab when he is a junior in high school.
                                They'll usually pay for alot including PCA's. I'm currently getting them to pay for my living
                                expenses because the communte to my university is considered a physical strain on my
                                body because I'd have to commute 100 miles a day.

                                Take Care,

                                Tracey

                                --- In amc_adults@yahoogroups.com, jane jaquias-ross <janecrisol@...> wrote:
                                >
                                > Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live in Long
                                Beach. RJ is using an electric chair and he has very minimal movement in his arms and
                                fingers, so I have to feed him and do his personal hygeine and care. Is there someone out
                                there who was very dependent just like my son? And if so then tell me what usually
                                happens when someone like him gets too heavy for me to carry... what will I do?
                                >
                                > Also, My son is in the 10th grade now and he has an aide with him at school to help
                                him out. He helps take notes, gets the books out of his backpack, feeds him etc.... I was
                                wondering if anyone out there is going through college right now and if so what type of
                                assistance do they receive from the disabilities assistance centers on campus.
                                >
                                > thanks,
                                > I'm really excited about this support group and I'm looking forward to getting some
                                good information from everyone.
                                >
                                > Jane
                                >
                                >
                                > ---------------------------------
                                > Expecting? Get great news right away with email Auto-Check.
                                > Try the Yahoo! Mail Beta.
                                >
                                > [Non-text portions of this message have been removed]
                                >
                              • janecrisol
                                Hi Tracey So what is a MFE? So basically towards the end of his senior year we should do like a closing IEP huh? Usually we do it a month or two after school
                                Message 15 of 21 , Apr 3 10:19 PM
                                • 0 Attachment
                                  Hi Tracey
                                  So what is a MFE? So basically towards the end of his senior year we
                                  should do like a closing IEP huh? Usually we do it a month or two
                                  after school begins. And what are PCA's ? And you said get involved
                                  when he's a junior? Why's that? Thanks for all your great info. I'm
                                  definitely taking notes for future reference.
                                  ---


                                  In amc_adults@yahoogroups.com, "tracey_schalk" <tracey_schalk@...>
                                  wrote:
                                  >
                                  > Hi Jane,
                                  >
                                  > Welcome to the group! I'm 19 and I've been in college for 1 1/2
                                  years and disability
                                  > services is amazing in comparison to the IEP process in high
                                  school. I go to a public
                                  > univeristy but I don't think that private colleges are allowed to
                                  not be ADA accesible when
                                  > they build new buildings. I know a girl at Harvard who is a
                                  paraplegic and they had to
                                  > provide an accessible dorm room which required reconstruction. Any
                                  type of
                                  > accomodations your son is getting at the high school level he
                                  should be able to get at the
                                  > college level. Word of advice when he is a senior, have the school
                                  do another multifactored
                                  > evaluation and write a whole new IEP. I had another MFE done my
                                  senior year and from
                                  > what I've heard if you don't and the college wants a more current
                                  one you can be charged
                                  > for it to be carried out but they don't charge for accomodations or
                                  anything. Its really
                                  > rather simple to get the accomodations just take his IEP and MFE
                                  into the office of
                                  > disability services before he starts classes and they'll make sure
                                  he gets what he needs to
                                  > be educationally successful. If your son will need personal Care
                                  attendants while there, get
                                  > involved with your local department of vocational rehab when he is
                                  a junior in high school.
                                  > They'll usually pay for alot including PCA's. I'm currently getting
                                  them to pay for my living
                                  > expenses because the communte to my university is considered a
                                  physical strain on my
                                  > body because I'd have to commute 100 miles a day.
                                  >
                                  > Take Care,
                                  >
                                  > Tracey
                                  >
                                  > --- In amc_adults@yahoogroups.com, jane jaquias-ross <janecrisol@>
                                  wrote:
                                  > >
                                  > > Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ)
                                  and we live in Long
                                  > Beach. RJ is using an electric chair and he has very minimal
                                  movement in his arms and
                                  > fingers, so I have to feed him and do his personal hygeine and
                                  care. Is there someone out
                                  > there who was very dependent just like my son? And if so then tell
                                  me what usually
                                  > happens when someone like him gets too heavy for me to carry...
                                  what will I do?
                                  > >
                                  > > Also, My son is in the 10th grade now and he has an aide with
                                  him at school to help
                                  > him out. He helps take notes, gets the books out of his backpack,
                                  feeds him etc.... I was
                                  > wondering if anyone out there is going through college right now
                                  and if so what type of
                                  > assistance do they receive from the disabilities assistance centers
                                  on campus.
                                  > >
                                  > > thanks,
                                  > > I'm really excited about this support group and I'm looking
                                  forward to getting some
                                  > good information from everyone.
                                  > >
                                  > > Jane
                                  > >
                                  > >
                                  > > ---------------------------------
                                  > > Expecting? Get great news right away with email Auto-Check.
                                  > > Try the Yahoo! Mail Beta.
                                  > >
                                  > > [Non-text portions of this message have been removed]
                                  > >
                                  >
                                • Betty Hicks
                                  Jane, I went to school for Human Services, of course the first day of class the teacher said you guys are entering the worst profession if you are trying to
                                  Message 16 of 21 , Apr 4 10:31 AM
                                  • 0 Attachment
                                    Jane,

                                    I went to school for Human Services, of course the first day of class the
                                    teacher said you guys are entering the worst profession if you are trying to
                                    find a job in this field. Then she went on to say that because this town,
                                    Madison, WI is a University town, most employers in Madison will not look at
                                    anyone with an Associate�s Degree, they want employees with Bachelors or
                                    higher, and then she said you can go on to the University after 2 years here
                                    but you will pretty much have to start over at the freshman level because
                                    none of our classes that we require for Human Services will not transfer.
                                    Now, I�m not sure if that was her way to see who would actually drop out
                                    because only 1 did, the rest of us stayed. But she was right about not
                                    being able to find a job here in Madison because I didn�t get one, the jobs
                                    were out of town. So I�m not doing what I went to school for, I sometimes
                                    use it on my friends when they have problems. I do temp work at a
                                    Independent Living Center, I am a Receptionist when the regular one is on
                                    vacation. Gives me some extra cash. Every month I get SSI and that I use
                                    to pay bills and all.

                                    Everyone here was suggesting getting in touch with the Division of
                                    Vocational Rehab, I don�t agree with that. I went to them before I
                                    graduated High school which was back in 1984 so things may have gotten much
                                    better since then, but the way you are describing your son, he is worse off
                                    than me, no offense, I�m able to type and answer phones, write, feed myself,
                                    but I am slow I grant you that, can�t type 100 wpm. I actually know someone
                                    who can, but anyways I�m in a power wheelchair, in their final report they
                                    said that I was not college material because of being physically slow and so
                                    we will not pay for any college for Betty. They based this decision on a 1
                                    week evaluation at a goodwill here in town where they had me doing all sorts
                                    of things. And some of it was new so of course I would be slow at first.
                                    Everything was on a timer so that didn�t help me. That�s my experience.

                                    COP/CIPP2 I�m not sure what they stand for but they help me to pay for my
                                    attendants and anything else I need to stay independent in my home.

                                    Hopes this helps,

                                    Betty


                                    --
                                    No virus found in this outgoing message.
                                    Checked by AVG Free Edition.
                                    Version: 7.5.446 / Virus Database: 268.18.25/743 - Release Date: 4/2/2007
                                    4:24 PM



                                    [Non-text portions of this message have been removed]
                                  • David
                                    Betty, is right about Division of Vocational Rehabilitation. I have gotten stuck with them twice in my lifetime, the first time was when I was 17, it took me
                                    Message 17 of 21 , Apr 5 3:36 PM
                                    • 0 Attachment
                                      Betty, is right about Division of Vocational Rehabilitation. I have
                                      gotten stuck with them twice in my lifetime, the first time was when
                                      I was 17, it took me 3 years to get clear enough of them to get on
                                      with life, the second time was after almost 4 years of being out of
                                      work and needing some more education to continue in the computer
                                      industry. I am a network engineer and software tester, ( not exactly
                                      a dieing industry) but the DVR people here in my area(washington
                                      state) decided that the whole computer industry is dieing, and within
                                      5-7 years will be dormant. that was of course just over 5 years ago
                                      now. they wanted me to do something other than computers( after 18
                                      years in the industry) but they wouldnt allow me to do my own
                                      business, because what I wanted to do nobody else was doing in the
                                      entire state of washington, I had/have data from other people making
                                      in excess of $70,000 per year doing it and thought it sounded like
                                      fun to be able to make enough money to get off of state aid and
                                      actually be contributing to the community instead of living off of
                                      it. but DVR wouldnt hear of it and put me through several different
                                      tests,(including a psych test) that only showed that I could do
                                      anything I chose to do. it took me finally accepting a job in a
                                      totally different field for long enough to get out from under DVR's
                                      thumb to get away from them. I am still not doing what I want to do,
                                      but I have gotten back to the computer industry and software
                                      testing....at least I can pay bills now.


                                      just my $.02 worth...STAY AWAY from DVR.


                                      David

                                      --- In amc_adults@yahoogroups.com, "Betty Hicks" <missbetty37@...>
                                      wrote:
                                      >
                                      > Jane,
                                      >
                                      > I went to school for Human Services, of course the first day of
                                      class the
                                      > teacher said you guys are entering the worst profession if you are
                                      trying to
                                      > find a job in this field. Then she went on to say that because
                                      this town,
                                      > Madison, WI is a University town, most employers in Madison will
                                      not look at
                                      > anyone with an Associate's Degree, they want employees with
                                      Bachelors or
                                      > higher, and then she said you can go on to the University after 2
                                      years here
                                      > but you will pretty much have to start over at the freshman level
                                      because
                                      > none of our classes that we require for Human Services will not
                                      transfer.
                                      > Now, I'm not sure if that was her way to see who would actually
                                      drop out
                                      > because only 1 did, the rest of us stayed. But she was right about
                                      not
                                      > being able to find a job here in Madison because I didn't get one,
                                      the jobs
                                      > were out of town. So I'm not doing what I went to school for, I
                                      sometimes
                                      > use it on my friends when they have problems. I do temp work at a
                                      > Independent Living Center, I am a Receptionist when the regular one
                                      is on
                                      > vacation. Gives me some extra cash. Every month I get SSI and
                                      that I use
                                      > to pay bills and all.
                                      >
                                      > Everyone here was suggesting getting in touch with the Division of
                                      > Vocational Rehab, I don't agree with that. I went to them before I
                                      > graduated High school which was back in 1984 so things may have
                                      gotten much
                                      > better since then, but the way you are describing your son, he is
                                      worse off
                                      > than me, no offense, I'm able to type and answer phones, write,
                                      feed myself,
                                      > but I am slow I grant you that, can't type 100 wpm. I actually
                                      know someone
                                      > who can, but anyways I'm in a power wheelchair, in their final
                                      report they
                                      > said that I was not college material because of being physically
                                      slow and so
                                      > we will not pay for any college for Betty. They based this
                                      decision on a 1
                                      > week evaluation at a goodwill here in town where they had me doing
                                      all sorts
                                      > of things. And some of it was new so of course I would be slow at
                                      first.
                                      > Everything was on a timer so that didn't help me. That's my
                                      experience.
                                      >
                                      > COP/CIPP2 I'm not sure what they stand for but they help me to pay
                                      for my
                                      > attendants and anything else I need to stay independent in my home.
                                      >
                                      > Hopes this helps,
                                      >
                                      > Betty
                                      >
                                      >
                                      > --
                                      > No virus found in this outgoing message.
                                      > Checked by AVG Free Edition.
                                      > Version: 7.5.446 / Virus Database: 268.18.25/743 - Release Date:
                                      4/2/2007
                                      > 4:24 PM
                                      >
                                      >
                                      >
                                      > [Non-text portions of this message have been removed]
                                      >
                                    • Amanda Hall
                                      Hey, I am curious if any of you have neurological problems. I ve read that some people with AMC have neurological problems. Please write me back if you do. I
                                      Message 18 of 21 , Apr 5 3:57 PM
                                      • 0 Attachment
                                        Hey,
                                        I am curious if any of you have neurological problems.
                                        I've read that some people with AMC have neurological
                                        problems. Please write me back if you do. I am having
                                        alot of problems. Such as Trigeminal Neuralgia,
                                        Cluster headaches, Hemicrania Continua, etc. Having
                                        problems with the left side of my face down my neck
                                        and arm.
                                        Thanks,
                                        Mandi

                                        AMANDA LYNN HALL
                                        "There is nothing in the Dark
                                        that isn't in the Light"





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                                      • DANIEL S
                                        hi im dan from oregon and i have the same problem my right side my id is daniel1964444@yahoo.com Amanda Hall wrote: Hey, I am
                                        Message 19 of 21 , Apr 5 4:29 PM
                                        • 0 Attachment
                                          hi im dan from oregon and i have the same problem my right side
                                          my id is daniel1964444@...

                                          Amanda Hall <amanda_lynn_hall@...> wrote:
                                          Hey,
                                          I am curious if any of you have neurological problems.
                                          I've read that some people with AMC have neurological
                                          problems. Please write me back if you do. I am having
                                          alot of problems. Such as Trigeminal Neuralgia,
                                          Cluster headaches, Hemicrania Continua, etc. Having
                                          problems with the left side of my face down my neck
                                          and arm.
                                          Thanks,
                                          Mandi

                                          AMANDA LYNN HALL
                                          "There is nothing in the Dark
                                          that isn't in the Light"

                                          __________________________________________________________
                                          It's here! Your new message!
                                          Get new email alerts with the free Yahoo! Toolbar.
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                                        • Denise
                                          Jane Have you looked into getting lifts installed? A couple of companies that send me advertisements have websites Sure Hands is at www.surehands.com And
                                          Message 20 of 21 , Apr 9 4:29 PM
                                          • 0 Attachment
                                            Jane
                                            Have you looked into getting lifts installed? A couple of companies that send me advertisements have websites
                                            Sure Hands is at www.surehands.com
                                            And Barrier Free Lifts is at www.BarrierFreeLifts.com
                                            You might try a local medical equipment company or even check with your PT office and check with insurance company if they will pay for it. Probably Not but you might catch them on a good day

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




                                            [Non-text portions of this message have been removed]
                                          • janet cresswell
                                            Hey all Welcome all members with amc I am Janet from UK and I am mobile by an electric scooter and adapted car All my limbs are affected and have had 26
                                            Message 21 of 21 , Apr 20 5:49 AM
                                            • 0 Attachment
                                              Hey all
                                              Welcome all members with amc
                                              I am Janet from UK and I am mobile by an electric scooter and adapted car
                                              All my limbs are affected and have had 26 surgeries, some successful and
                                              some not!
                                              I am a student at university and study creative writing which I enjoy very
                                              much
                                              I also enjoy travelling abroad, socializing and most types of music
                                              Please email me if you want to know more...
                                              Love
                                              Janet blue xx
                                              Http://janetcresswell.tripod.com
                                              -------Original Message-------

                                              From: Melissa Snyder
                                              Date: 04/02/07 17:47:16
                                              To: amc_adults@yahoogroups.com
                                              Subject: Re: [Adults AMC] new

                                              Hi, I'm new to the group as well. My name is Melissa and i'm 21yrs old and
                                              was a college student at Mars Hill College in NC. As far as college goes, my
                                              advice would be for him to attend a public college, because if they get
                                              federal funding they are required by law to provide someone to help RJ with
                                              his needs, whereas at a private institution it is very difficult. i'm not
                                              sure if the have the same serives up there as they do in the south but if
                                              there is you should definitly open a case with the Dept. of Vocational
                                              Rehabilitation...they offer many services that can help. Good luck.
                                              -melissa

                                              jane jaquias-ross <janecrisol@...> wrote:
                                              Hi I'm new to the group. I'm a mother of a 15 year old boy (RJ) and we live
                                              in Long Beach. RJ is using an electric chair and he has very minimal
                                              movement in his arms and fingers, so I have to feed him and do his personal
                                              hygeine and care. Is there someone out there who was very dependent just
                                              like my son? And if so then tell me what usually happens when someone like
                                              him gets too heavy for me to carry... what will I do?

                                              Also, My son is in the 10th grade now and he has an aide with him at school
                                              to help him out. He helps take notes, gets the books out of his backpack,
                                              feeds him etc.... I was wondering if anyone out there is going through
                                              college right now and if so what type of assistance do they receive from the
                                              disabilities assistance centers on campus.

                                              thanks,
                                              I'm really excited about this support group and I'm looking forward to
                                              getting some good information from everyone.

                                              Jane

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