Re: sharing some frusterations

[Guest guest]

,

I am sorry to read about your struggles but I understand. I have a cousin

who is only deaf and it was hard for him to take notes, keep up with the

coursework and pass his exams. Your talking about model and bottle is perfect.

That happens so often and is hard to explain to people.

About your fatigue, of course your sleep apnea has to do with it but so does

your having to work twice as hard just to get the information that others do

easily. I am not only talking about hearing. You have visual difficulties

and more which can increase your fatigue.

Last, the part you spoke about the CHARGE mental disability is important to

me. Patty does have the ADD, OCD, Tourettes, etc., but that isn't the only

reason for her emotional responses and feeling of her " self. " I have to share

that recently I was worried about her and was wondering about the CHARGE

thing. I spoke to a CHARGE specialist who I trust implicitly. I asked if what

she was experiencing was CHARGE and would last forever. This professional

explained what I was thinking to be the cause. She said that anyone who has

disabilities and has to struggle as an adult, not have social opportunities,

doesn't have appropriate services, and feels frustrated and stressed exhibit

the same feelings and behaviors. It is a human thing and the " disability "

doesn't matter. Everyone wants to be understood, everyone wants to be

accepted.

Everyone wants to be needed, and a part of this world. Everyone needs the

world modified appropriately to be as successful as they can. If not the

frustrations occur and from there other things occur.

I am saying it in a weird complicated way and I am sure specialists out

there can and do say it better. What I am trying to share is it might not be

CHARGE but your stress and frustrations. Don't worry about that part.

Have you thought of taking a tape recorder with you? Can the professor give

you his/her outline ON A COMPUTER? If the exams are from class notes and

you aren't getting the information he is providing the rest of the class due to

your disability then he cannot grade you as such. Can you go in and speak

to him about this? Can you show him the notes you have in comparison to his

tests? If your peer note taker isn't providing you good notes can he get

someone else? The person giving you the notes might have been happy at first

but

finds it frustrating for herself. What grade is that person getting anyway?

You want someone who takes good eligible notes AND is getting good grades

from them.

When Patty had taken classes she had someone taking notes for her but she

wasn't able to read them. So she asked others in the class. She finally ended

up with someone who did well by her. But then Patty tried to be independent

and didn't access available disability services. If she isn't serviced

appropriately then failure occurs. It is one of those hard things to deal with

and is a self fulfilling prophecy. If the person has abilities and is

serviced appropriately they can do as well as their potential. If not failure

occurs yet is not the persons true potential. Failure can be caused.

, are you serviced by anyone on campus for disabilities? Of course

you want to be as independent as possible but there are times where you need

to ask for help. I think this is one of those. But you need help by

someone who understands what it is to be hearing impaired in combination with

being

visually impaired. Then you also need someone who understands your fatigue

and other CHARGE issues.

I would really advocate for you to be able to take the exams again after you

get the proper notes and information. Can they give you an incomplete and

then grade you later after you take the tests again with the real notes?

Advocate for yourself in that they cannot fail you due to your disability. How

in the world can you know something without being given the information TO

learn and know it?

Just in case, if you can do nothing about it and have to have an F on your

transcripts then just know tons of " normal " students get that grade every once

in a while.

Good luck.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

,

I am sorry to read about your struggles but I understand. I have a cousin

who is only deaf and it was hard for him to take notes, keep up with the

coursework and pass his exams. Your talking about model and bottle is perfect.

That happens so often and is hard to explain to people.

About your fatigue, of course your sleep apnea has to do with it but so does

your having to work twice as hard just to get the information that others do

easily. I am not only talking about hearing. You have visual difficulties

and more which can increase your fatigue.

Last, the part you spoke about the CHARGE mental disability is important to

me. Patty does have the ADD, OCD, Tourettes, etc., but that isn't the only

reason for her emotional responses and feeling of her " self. " I have to share

that recently I was worried about her and was wondering about the CHARGE

thing. I spoke to a CHARGE specialist who I trust implicitly. I asked if what

she was experiencing was CHARGE and would last forever. This professional

explained what I was thinking to be the cause. She said that anyone who has

disabilities and has to struggle as an adult, not have social opportunities,

doesn't have appropriate services, and feels frustrated and stressed exhibit

the same feelings and behaviors. It is a human thing and the " disability "

doesn't matter. Everyone wants to be understood, everyone wants to be

accepted.

Everyone wants to be needed, and a part of this world. Everyone needs the

world modified appropriately to be as successful as they can. If not the

frustrations occur and from there other things occur.

I am saying it in a weird complicated way and I am sure specialists out

there can and do say it better. What I am trying to share is it might not be

CHARGE but your stress and frustrations. Don't worry about that part.

Have you thought of taking a tape recorder with you? Can the professor give

you his/her outline ON A COMPUTER? If the exams are from class notes and

you aren't getting the information he is providing the rest of the class due to

your disability then he cannot grade you as such. Can you go in and speak

to him about this? Can you show him the notes you have in comparison to his

tests? If your peer note taker isn't providing you good notes can he get

someone else? The person giving you the notes might have been happy at first

but

finds it frustrating for herself. What grade is that person getting anyway?

You want someone who takes good eligible notes AND is getting good grades

from them.

When Patty had taken classes she had someone taking notes for her but she

wasn't able to read them. So she asked others in the class. She finally ended

up with someone who did well by her. But then Patty tried to be independent

and didn't access available disability services. If she isn't serviced

appropriately then failure occurs. It is one of those hard things to deal with

and is a self fulfilling prophecy. If the person has abilities and is

serviced appropriately they can do as well as their potential. If not failure

occurs yet is not the persons true potential. Failure can be caused.

, are you serviced by anyone on campus for disabilities? Of course

you want to be as independent as possible but there are times where you need

to ask for help. I think this is one of those. But you need help by

someone who understands what it is to be hearing impaired in combination with

being

visually impaired. Then you also need someone who understands your fatigue

and other CHARGE issues.

I would really advocate for you to be able to take the exams again after you

get the proper notes and information. Can they give you an incomplete and

then grade you later after you take the tests again with the real notes?

Advocate for yourself in that they cannot fail you due to your disability. How

in the world can you know something without being given the information TO

learn and know it?

Just in case, if you can do nothing about it and have to have an F on your

transcripts then just know tons of " normal " students get that grade every once

in a while.

Good luck.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

, This is so frustrating to hear! There are accomodations

for disabilities that colleges must adhere to. I would find out

through the administration who can help you with this. The instructor

should give you another option rather than require another student to

help--and I can't imagine how it makes you feel as this person doesn't

seem to want to help (that's another issue all together). So, I would

find out what accomodations can be made through the school, and also

consider having a tape recorder in the class? That might help. This

instructor may need to do something herself to accomodate you--we all

learn differently and so it would actually help her to grow as a

teacher to learn to appeal to different learning styles. That is her

charge as an effective teacher to do so. Good luck and please keep us

posted!

B.

>

> Hello everyone,

>

> I thought I would share this on list as perhaps this will give some

insight

> for parents on what its like being a person with dual disabilities

trying to

> go to school.

>

> This semester I am taking three courses, Humanities Frontiers of

Thought,

> Humanities World Religion and Creative Writing: Fiction. Two courses

are

> going just fine but world religion is a nightmare! I love the course

and

> find it extremely interesting. The instructor is awesome, she's so

> passionate and I just love listening to her explain things. But here

is the

> problem: She does no written notes, she just writes everything on

the board.

> Well, I cannot see the board. So I do the best I can listening to new

> terminology and names orally and taking notes on my laptop. But I am

finding

> that extremely difficult. I missing so much of the new terminology by

> misspelling it. So I set up with the instructor for a classmate to take

> notes. This is someone who the instructor recommended. Its kind of

obvious

> to me that she really doesn't want to give me her notes and ONLY

gives me

> the stuff from the board and not the full lecture notes. I am

finding that

> very difficult as its hard to compare my notes with all the mistakes

to her

> very limited notes. So, I have failed my first two exams in this course

> which together were worth 40% of my grade. This is the first time

I've ever

> been in any danger of failing a course. I've always been a good

student! Its

> too late to withdraw from the course now with only four weeks left

in the

> semester. Plus with my sleep apnea I have been sooo tired. I have

not yet

> gotten on a CPAP machine and I cant even begin explain how tired I

am all

> the time. I come home and take naps. I can barely keep my eyes open

in class

> and I cannot get through the day without multiple cups of coffee.

This is

> the first semester where my motivation and concentration has really

been

> affected by this. Last semester one of my instructors actually got

mad at me

> for being so tired all the time. That was before I knew I had sleep

apnea.

> Plus I know my hearing is a big issue. I have been fighting the gov.

for a

> new hearing aid. Right now I use it on full blast and that really

distorts

> the sound. For example, my instructor was talking about " models " and

there I

> am sitting there trying to figure out why she's talking about

" bottles " . I

> am going to go in and talk to counseling about getting a medical

deferral

> but I am unsure my doctor will be willing to sign off on this. I

feel so

> stupid because I am failing what really is a relatively easy course!

I have

> been told that I do not have any mental disability, which from what I

> understand is pretty common with CHARGE. But things like this make me

> wonder. And what's even more frustrating, I actually like the

course! I've

> never failed a college course before and I hate the idea of having

an F on

> my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

>

>

> CHARGE Adult

>

[Guest guest]

, This is so frustrating to hear! There are accomodations

for disabilities that colleges must adhere to. I would find out

through the administration who can help you with this. The instructor

should give you another option rather than require another student to

help--and I can't imagine how it makes you feel as this person doesn't

seem to want to help (that's another issue all together). So, I would

find out what accomodations can be made through the school, and also

consider having a tape recorder in the class? That might help. This

instructor may need to do something herself to accomodate you--we all

learn differently and so it would actually help her to grow as a

teacher to learn to appeal to different learning styles. That is her

charge as an effective teacher to do so. Good luck and please keep us

posted!

B.

>

> Hello everyone,

>

> I thought I would share this on list as perhaps this will give some

insight

> for parents on what its like being a person with dual disabilities

trying to

> go to school.

>

> This semester I am taking three courses, Humanities Frontiers of

Thought,

> Humanities World Religion and Creative Writing: Fiction. Two courses

are

> going just fine but world religion is a nightmare! I love the course

and

> find it extremely interesting. The instructor is awesome, she's so

> passionate and I just love listening to her explain things. But here

is the

> problem: She does no written notes, she just writes everything on

the board.

> Well, I cannot see the board. So I do the best I can listening to new

> terminology and names orally and taking notes on my laptop. But I am

finding

> that extremely difficult. I missing so much of the new terminology by

> misspelling it. So I set up with the instructor for a classmate to take

> notes. This is someone who the instructor recommended. Its kind of

obvious

> to me that she really doesn't want to give me her notes and ONLY

gives me

> the stuff from the board and not the full lecture notes. I am

finding that

> very difficult as its hard to compare my notes with all the mistakes

to her

> very limited notes. So, I have failed my first two exams in this course

> which together were worth 40% of my grade. This is the first time

I've ever

> been in any danger of failing a course. I've always been a good

student! Its

> too late to withdraw from the course now with only four weeks left

in the

> semester. Plus with my sleep apnea I have been sooo tired. I have

not yet

> gotten on a CPAP machine and I cant even begin explain how tired I

am all

> the time. I come home and take naps. I can barely keep my eyes open

in class

> and I cannot get through the day without multiple cups of coffee.

This is

> the first semester where my motivation and concentration has really

been

> affected by this. Last semester one of my instructors actually got

mad at me

> for being so tired all the time. That was before I knew I had sleep

apnea.

> Plus I know my hearing is a big issue. I have been fighting the gov.

for a

> new hearing aid. Right now I use it on full blast and that really

distorts

> the sound. For example, my instructor was talking about " models " and

there I

> am sitting there trying to figure out why she's talking about

" bottles " . I

> am going to go in and talk to counseling about getting a medical

deferral

> but I am unsure my doctor will be willing to sign off on this. I

feel so

> stupid because I am failing what really is a relatively easy course!

I have

> been told that I do not have any mental disability, which from what I

> understand is pretty common with CHARGE. But things like this make me

> wonder. And what's even more frustrating, I actually like the

course! I've

> never failed a college course before and I hate the idea of having

an F on

> my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

>

>

> CHARGE Adult

>

[Guest guest]

,

Your college must have an office for students with disabilities. Can you have

them hire a note-taker for you? Someone who actually has an ounce of compassion

for another person and could do a better job? When I was in graduate school, I

was paid a small wage to type up a classmate's final paper because she had

carpal-tunnel and couldn't type that much. She could pick any student to do the

job, and the disability office paid me.

I'm really kind of being a hypocrite though. As ashamed as I am to admit it,

when I was in undergrad I think I had an attitude closer to your " hired-hand. "

I would get annoyed that people with learning disabilities would get extra time

to take exams and stuff. I became less selfish as I got older, but I truly

didn't understand until I had my son.

(mom to Evan 8 mos)

PS Another thing you may try: there is a special kind of CCTV (I think it is

called an Apex), that switches from near to far. So you can focus it in on the

board and it will magnify the teachers writing for you, and if you need it for

near you just swivel it down to your paper. It even stores the focus settings

so you don't have to reload them until you move the CCTV somewhere else. If you

had one of these, then you wouldn't have to rely so much on another student.

Nieder wrote:

Hello everyone,

I thought I would share this on list as perhaps this will give some insight

for parents on what its like being a person with dual disabilities trying to

go to school.

This semester I am taking three courses, Humanities Frontiers of Thought,

Humanities World Religion and Creative Writing: Fiction. Two courses are

going just fine but world religion is a nightmare! I love the course and

find it extremely interesting. The instructor is awesome, she's so

passionate and I just love listening to her explain things. But here is the

problem: She does no written notes, she just writes everything on the board.

Well, I cannot see the board. So I do the best I can listening to new

terminology and names orally and taking notes on my laptop. But I am finding

that extremely difficult. I missing so much of the new terminology by

misspelling it. So I set up with the instructor for a classmate to take

notes. This is someone who the instructor recommended. Its kind of obvious

to me that she really doesn't want to give me her notes and ONLY gives me

the stuff from the board and not the full lecture notes. I am finding that

very difficult as its hard to compare my notes with all the mistakes to her

very limited notes. So, I have failed my first two exams in this course

which together were worth 40% of my grade. This is the first time I've ever

been in any danger of failing a course. I've always been a good student! Its

too late to withdraw from the course now with only four weeks left in the

semester. Plus with my sleep apnea I have been sooo tired. I have not yet

gotten on a CPAP machine and I cant even begin explain how tired I am all

the time. I come home and take naps. I can barely keep my eyes open in class

and I cannot get through the day without multiple cups of coffee. This is

the first semester where my motivation and concentration has really been

affected by this. Last semester one of my instructors actually got mad at me

for being so tired all the time. That was before I knew I had sleep apnea.

Plus I know my hearing is a big issue. I have been fighting the gov. for a

new hearing aid. Right now I use it on full blast and that really distorts

the sound. For example, my instructor was talking about " models " and there I

am sitting there trying to figure out why she's talking about " bottles " . I

am going to go in and talk to counseling about getting a medical deferral

but I am unsure my doctor will be willing to sign off on this. I feel so

stupid because I am failing what really is a relatively easy course! I have

been told that I do not have any mental disability, which from what I

understand is pretty common with CHARGE. But things like this make me

wonder. And what's even more frustrating, I actually like the course! I've

never failed a college course before and I hate the idea of having an F on

my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

CHARGE Adult

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

Your college must have an office for students with disabilities. Can you have

them hire a note-taker for you? Someone who actually has an ounce of compassion

for another person and could do a better job? When I was in graduate school, I

was paid a small wage to type up a classmate's final paper because she had

carpal-tunnel and couldn't type that much. She could pick any student to do the

job, and the disability office paid me.

I'm really kind of being a hypocrite though. As ashamed as I am to admit it,

when I was in undergrad I think I had an attitude closer to your " hired-hand. "

I would get annoyed that people with learning disabilities would get extra time

to take exams and stuff. I became less selfish as I got older, but I truly

didn't understand until I had my son.

(mom to Evan 8 mos)

PS Another thing you may try: there is a special kind of CCTV (I think it is

called an Apex), that switches from near to far. So you can focus it in on the

board and it will magnify the teachers writing for you, and if you need it for

near you just swivel it down to your paper. It even stores the focus settings

so you don't have to reload them until you move the CCTV somewhere else. If you

had one of these, then you wouldn't have to rely so much on another student.

Nieder wrote:

Hello everyone,

I thought I would share this on list as perhaps this will give some insight

for parents on what its like being a person with dual disabilities trying to

go to school.

This semester I am taking three courses, Humanities Frontiers of Thought,

Humanities World Religion and Creative Writing: Fiction. Two courses are

going just fine but world religion is a nightmare! I love the course and

find it extremely interesting. The instructor is awesome, she's so

passionate and I just love listening to her explain things. But here is the

problem: She does no written notes, she just writes everything on the board.

Well, I cannot see the board. So I do the best I can listening to new

terminology and names orally and taking notes on my laptop. But I am finding

that extremely difficult. I missing so much of the new terminology by

misspelling it. So I set up with the instructor for a classmate to take

notes. This is someone who the instructor recommended. Its kind of obvious

to me that she really doesn't want to give me her notes and ONLY gives me

the stuff from the board and not the full lecture notes. I am finding that

very difficult as its hard to compare my notes with all the mistakes to her

very limited notes. So, I have failed my first two exams in this course

which together were worth 40% of my grade. This is the first time I've ever

been in any danger of failing a course. I've always been a good student! Its

too late to withdraw from the course now with only four weeks left in the

semester. Plus with my sleep apnea I have been sooo tired. I have not yet

gotten on a CPAP machine and I cant even begin explain how tired I am all

the time. I come home and take naps. I can barely keep my eyes open in class

and I cannot get through the day without multiple cups of coffee. This is

the first semester where my motivation and concentration has really been

affected by this. Last semester one of my instructors actually got mad at me

for being so tired all the time. That was before I knew I had sleep apnea.

Plus I know my hearing is a big issue. I have been fighting the gov. for a

new hearing aid. Right now I use it on full blast and that really distorts

the sound. For example, my instructor was talking about " models " and there I

am sitting there trying to figure out why she's talking about " bottles " . I

am going to go in and talk to counseling about getting a medical deferral

but I am unsure my doctor will be willing to sign off on this. I feel so

stupid because I am failing what really is a relatively easy course! I have

been told that I do not have any mental disability, which from what I

understand is pretty common with CHARGE. But things like this make me

wonder. And what's even more frustrating, I actually like the course! I've

never failed a college course before and I hate the idea of having an F on

my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

CHARGE Adult

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

Your college must have an office for students with disabilities. Can you have

them hire a note-taker for you? Someone who actually has an ounce of compassion

for another person and could do a better job? When I was in graduate school, I

was paid a small wage to type up a classmate's final paper because she had

carpal-tunnel and couldn't type that much. She could pick any student to do the

job, and the disability office paid me.

I'm really kind of being a hypocrite though. As ashamed as I am to admit it,

when I was in undergrad I think I had an attitude closer to your " hired-hand. "

I would get annoyed that people with learning disabilities would get extra time

to take exams and stuff. I became less selfish as I got older, but I truly

didn't understand until I had my son.

(mom to Evan 8 mos)

PS Another thing you may try: there is a special kind of CCTV (I think it is

called an Apex), that switches from near to far. So you can focus it in on the

board and it will magnify the teachers writing for you, and if you need it for

near you just swivel it down to your paper. It even stores the focus settings

so you don't have to reload them until you move the CCTV somewhere else. If you

had one of these, then you wouldn't have to rely so much on another student.

Nieder wrote:

Hello everyone,

I thought I would share this on list as perhaps this will give some insight

for parents on what its like being a person with dual disabilities trying to

go to school.

This semester I am taking three courses, Humanities Frontiers of Thought,

Humanities World Religion and Creative Writing: Fiction. Two courses are

going just fine but world religion is a nightmare! I love the course and

find it extremely interesting. The instructor is awesome, she's so

passionate and I just love listening to her explain things. But here is the

problem: She does no written notes, she just writes everything on the board.

Well, I cannot see the board. So I do the best I can listening to new

terminology and names orally and taking notes on my laptop. But I am finding

that extremely difficult. I missing so much of the new terminology by

misspelling it. So I set up with the instructor for a classmate to take

notes. This is someone who the instructor recommended. Its kind of obvious

to me that she really doesn't want to give me her notes and ONLY gives me

the stuff from the board and not the full lecture notes. I am finding that

very difficult as its hard to compare my notes with all the mistakes to her

very limited notes. So, I have failed my first two exams in this course

which together were worth 40% of my grade. This is the first time I've ever

been in any danger of failing a course. I've always been a good student! Its

too late to withdraw from the course now with only four weeks left in the

semester. Plus with my sleep apnea I have been sooo tired. I have not yet

gotten on a CPAP machine and I cant even begin explain how tired I am all

the time. I come home and take naps. I can barely keep my eyes open in class

and I cannot get through the day without multiple cups of coffee. This is

the first semester where my motivation and concentration has really been

affected by this. Last semester one of my instructors actually got mad at me

for being so tired all the time. That was before I knew I had sleep apnea.

Plus I know my hearing is a big issue. I have been fighting the gov. for a

new hearing aid. Right now I use it on full blast and that really distorts

the sound. For example, my instructor was talking about " models " and there I

am sitting there trying to figure out why she's talking about " bottles " . I

am going to go in and talk to counseling about getting a medical deferral

but I am unsure my doctor will be willing to sign off on this. I feel so

stupid because I am failing what really is a relatively easy course! I have

been told that I do not have any mental disability, which from what I

understand is pretty common with CHARGE. But things like this make me

wonder. And what's even more frustrating, I actually like the course! I've

never failed a college course before and I hate the idea of having an F on

my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

CHARGE Adult

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

This sounds like a really tough situation! It would be nice to know up

front what the teaching style of different professors was before choosing

which time to take a particular course. I know my son struggles if the

teachers are all read the book and write the answer; it is almost a

guarantee of failure, but if they lecture, have class discussion, and humor,

then he does great. When Tyler signs up for classes, he talks to a

disability counselor at the college, they give him tips on how the different

teachers teach. That is far easier for him, than trying to switch after the

semester starts.

Good luck, I so admire your ability to figure out solutions, because we KNOW

any F you have, would have zero to do with intelligence and everything to do

with getting the information in, in the first place.

Kim

> Hello everyone,

>

> I thought I would share this on list as perhaps this will give some insight

> for parents on what its like being a person with dual disabilities trying to

> go to school.

>

> This semester I am taking three courses, Humanities Frontiers of Thought,

> Humanities World Religion and Creative Writing: Fiction. Two courses are

> going just fine but world religion is a nightmare! I love the course and

> find it extremely interesting. The instructor is awesome, she's so

> passionate and I just love listening to her explain things. But here is the

> problem: She does no written notes, she just writes everything on the board.

> Well, I cannot see the board. So I do the best I can listening to new

> terminology and names orally and taking notes on my laptop. But I am finding

> that extremely difficult. I missing so much of the new terminology by

> misspelling it. So I set up with the instructor for a classmate to take

> notes. This is someone who the instructor recommended. Its kind of obvious

> to me that she really doesn't want to give me her notes and ONLY gives me

> the stuff from the board and not the full lecture notes. I am finding that

> very difficult as its hard to compare my notes with all the mistakes to her

> very limited notes. So, I have failed my first two exams in this course

> which together were worth 40% of my grade. This is the first time I've ever

> been in any danger of failing a course. I've always been a good student! Its

> too late to withdraw from the course now with only four weeks left in the

> semester. Plus with my sleep apnea I have been sooo tired. I have not yet

> gotten on a CPAP machine and I cant even begin explain how tired I am all

> the time. I come home and take naps. I can barely keep my eyes open in class

> and I cannot get through the day without multiple cups of coffee. This is

> the first semester where my motivation and concentration has really been

> affected by this. Last semester one of my instructors actually got mad at me

> for being so tired all the time. That was before I knew I had sleep apnea.

> Plus I know my hearing is a big issue. I have been fighting the gov. for a

> new hearing aid. Right now I use it on full blast and that really distorts

> the sound. For example, my instructor was talking about " models " and there I

> am sitting there trying to figure out why she's talking about " bottles " . I

> am going to go in and talk to counseling about getting a medical deferral

> but I am unsure my doctor will be willing to sign off on this. I feel so

> stupid because I am failing what really is a relatively easy course! I have

> been told that I do not have any mental disability, which from what I

> understand is pretty common with CHARGE. But things like this make me

> wonder. And what's even more frustrating, I actually like the course! I've

> never failed a college course before and I hate the idea of having an F on

> my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

>

>

> CHARGE Adult

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

tafe otu here has a disability thing stupid people i wanna wack them buy me

a ticket and ill coem kill them all for u

>

> ,

>

> This sounds like a really tough situation! It would be nice to know up

> front what the teaching style of different professors was before choosing

> which time to take a particular course. I know my son struggles if the

> teachers are all read the book and write the answer; it is almost a

> guarantee of failure, but if they lecture, have class discussion, and

> humor,

> then he does great. When Tyler signs up for classes, he talks to a

> disability counselor at the college, they give him tips on how the

> different

> teachers teach. That is far easier for him, than trying to switch after

> the

> semester starts.

>

> Good luck, I so admire your ability to figure out solutions, because we

> KNOW

> any F you have, would have zero to do with intelligence and everything to

> do

> with getting the information in, in the first place.

>

> Kim

>

>

>

>

>

>

> > Hello everyone,

> >

> > I thought I would share this on list as perhaps this will give some

> insight

> > for parents on what its like being a person with dual disabilities

> trying to

> > go to school.

> >

> > This semester I am taking three courses, Humanities Frontiers of

> Thought,

> > Humanities World Religion and Creative Writing: Fiction. Two courses are

> > going just fine but world religion is a nightmare! I love the course and

> > find it extremely interesting. The instructor is awesome, she's so

> > passionate and I just love listening to her explain things. But here is

> the

> > problem: She does no written notes, she just writes everything on the

> board.

> > Well, I cannot see the board. So I do the best I can listening to new

> > terminology and names orally and taking notes on my laptop. But I am

> finding

> > that extremely difficult. I missing so much of the new terminology by

> > misspelling it. So I set up with the instructor for a classmate to take

> > notes. This is someone who the instructor recommended. Its kind of

> obvious

> > to me that she really doesn't want to give me her notes and ONLY gives

> me

> > the stuff from the board and not the full lecture notes. I am finding

> that

> > very difficult as its hard to compare my notes with all the mistakes to

> her

> > very limited notes. So, I have failed my first two exams in this course

> > which together were worth 40% of my grade. This is the first time I've

> ever

> > been in any danger of failing a course. I've always been a good student!

> Its

> > too late to withdraw from the course now with only four weeks left in

> the

> > semester. Plus with my sleep apnea I have been sooo tired. I have not

> yet

> > gotten on a CPAP machine and I cant even begin explain how tired I am

> all

> > the time. I come home and take naps. I can barely keep my eyes open in

> class

> > and I cannot get through the day without multiple cups of coffee. This

> is

> > the first semester where my motivation and concentration has really been

> > affected by this. Last semester one of my instructors actually got mad

> at me

> > for being so tired all the time. That was before I knew I had sleep

> apnea.

> > Plus I know my hearing is a big issue. I have been fighting the gov. for

> a

> > new hearing aid. Right now I use it on full blast and that really

> distorts

> > the sound. For example, my instructor was talking about " models " and

> there I

> > am sitting there trying to figure out why she's talking about " bottles " .

> I

> > am going to go in and talk to counseling about getting a medical

> deferral

> > but I am unsure my doctor will be willing to sign off on this. I feel so

> > stupid because I am failing what really is a relatively easy course! I

> have

> > been told that I do not have any mental disability, which from what I

> > understand is pretty common with CHARGE. But things like this make me

> > wonder. And what's even more frustrating, I actually like the course!

> I've

> > never failed a college course before and I hate the idea of having an F

> on

> > my transcripts. Anyhow, there's my vent for the night! Talk to you soon.

> >

> >

> > CHARGE Adult

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

,

We are here for support and to hear your vent, but I have to say I am so

impressed with your self-advocacy abilities.

Kim

> Hey everyone,

>

> To answer the question a few people have asked, I have tried taping the

> lectures with a 4 track tape recorder and a mini cassette recorder. The sound

> quality is so poor that with my hearing loss, its pretty much useless. A

> digital recorder would probably work well, but its a little out of my price

> range at the moment. I have spoken to student services, specifically

> Disability services, and they haven't been the most helpful. I find that they

> aren't always the best at listening to individuals needs. They will often go,

> oh well this person didn't need that accommodation, why do you? As well as I

> have been around the system too long for them to really pull the wool over my

> eyes, and they tend to get annoyed by that. I am going to demand a note taker

> that the school hires, and that person will type up the notes for me for any

> class where the instructor does not have notes I can have. This is the first

> time I have been in the situation where the instructor does not provide notes

> for her lectures. I can understand this, as when I do lectures for classes and

> businesses, I don't use notes either. I find notes actually quite restricting.

> Its all in a persons teaching style. Unfortunately its not always conducive to

> the students learning styles/needs. I am going to call first thing tomorrow

> morning to talk to a counselor about this, someone who is not in the

> disability services department and is completely nutreal. I think what people

> tend to forget is that speaking one on one in a little office is sooo much

> different then sitting in the classoom, trying to follow an instructor thats

> walking around the room, hearing what other students are saying and trying to

> figure out what is said with new terminology and so on. And a course such as

> world religion, alot of the names and terminology is not even in English. Very

> frusterating! And with me being so tired all the time... its even making

> things harder. This is also my only morning class which makes me wonder if

> that is also affecting my concentration. My other two courses are

> afternoon/evening where I have been up for a while and a little more

> energetic.

>

>

> Re: sharing some frusterations

>

>

> ,

>

> I am sorry to read about your struggles but I understand. I have a cousin

> who is only deaf and it was hard for him to take notes, keep up with the

> coursework and pass his exams. Your talking about model and bottle is

> perfect.

> That happens so often and is hard to explain to people.

>

> About your fatigue, of course your sleep apnea has to do with it but so

> does

> your having to work twice as hard just to get the information that others

> do

> easily. I am not only talking about hearing. You have visual difficulties

> and more which can increase your fatigue.

>

> Last, the part you spoke about the CHARGE mental disability is important to

> me. Patty does have the ADD, OCD, Tourettes, etc., but that isn't the only

> reason for her emotional responses and feeling of her " self. " I have to

> share

> that recently I was worried about her and was wondering about the CHARGE

> thing. I spoke to a CHARGE specialist who I trust implicitly. I asked if

> what

> she was experiencing was CHARGE and would last forever. This professional

> explained what I was thinking to be the cause. She said that anyone who

> has

> disabilities and has to struggle as an adult, not have social

> opportunities,

> doesn't have appropriate services, and feels frustrated and stressed

> exhibit

> the same feelings and behaviors. It is a human thing and the " disability "

> doesn't matter. Everyone wants to be understood, everyone wants to be

> accepted.

> Everyone wants to be needed, and a part of this world. Everyone needs the

> world modified appropriately to be as successful as they can. If not the

> frustrations occur and from there other things occur.

>

> I am saying it in a weird complicated way and I am sure specialists out

> there can and do say it better. What I am trying to share is it might not

> be

> CHARGE but your stress and frustrations. Don't worry about that part.

>

> Have you thought of taking a tape recorder with you? Can the professor

> give

> you his/her outline ON A COMPUTER? If the exams are from class notes and

> you aren't getting the information he is providing the rest of the class

> due to

> your disability then he cannot grade you as such. Can you go in and speak

> to him about this? Can you show him the notes you have in comparison to

> his

> tests? If your peer note taker isn't providing you good notes can he get

> someone else? The person giving you the notes might have been happy at

> first but

> finds it frustrating for herself. What grade is that person getting

> anyway?

> You want someone who takes good eligible notes AND is getting good grades

> from them.

>

> When Patty had taken classes she had someone taking notes for her but she

> wasn't able to read them. So she asked others in the class. She finally

> ended

> up with someone who did well by her. But then Patty tried to be

> independent

> and didn't access available disability services. If she isn't serviced

> appropriately then failure occurs. It is one of those hard things to deal

> with

> and is a self fulfilling prophecy. If the person has abilities and is

> serviced appropriately they can do as well as their potential. If not

> failure

> occurs yet is not the persons true potential. Failure can be caused.

>

> , are you serviced by anyone on campus for disabilities? Of

> course

> you want to be as independent as possible but there are times where you

> need

> to ask for help. I think this is one of those. But you need help by

> someone who understands what it is to be hearing impaired in combination

> with being

> visually impaired. Then you also need someone who understands your fatigue

> and other CHARGE issues.

>

> I would really advocate for you to be able to take the exams again after

> you

> get the proper notes and information. Can they give you an incomplete and

> then grade you later after you take the tests again with the real notes?

> Advocate for yourself in that they cannot fail you due to your disability.

> How

> in the world can you know something without being given the information TO

> learn and know it?

>

> Just in case, if you can do nothing about it and have to have an F on your

> transcripts then just know tons of " normal " students get that grade every

> once

> in a while.

>

> Good luck.

>

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>