Re: I was accepted for dissability services funding!

[Guest guest]

YAY love u

>

> Well after fighting since mid 2004, I have some GOOD news! (finaly!)

>

> I got accepted for ontario dissability funding. I dunno if it was the

> letters last summer to the odsp office (um i think i was very very

> insistant and wasnt going to take no for an answere) or my doctor

> getting innundated with phone calls (all of wich my counceller clamed

> she hadnt called my doc that one day...)

>

> Anyways I can finaly get all my adaptive tech! Finaly i can read like

> everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> can hear on. Finaly I can afford to get proper diet suplements. Finaly

> I can get the meds i should be on. I can get listening devices. I can

> get stuff for my back and I can get mobility stuff. Finaly I can get a

> bed shaker so I can be woken up. I can get the screen reader, I can get

> JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> to make my life better! Finaly!

>

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

YAY love u

>

> Well after fighting since mid 2004, I have some GOOD news! (finaly!)

>

> I got accepted for ontario dissability funding. I dunno if it was the

> letters last summer to the odsp office (um i think i was very very

> insistant and wasnt going to take no for an answere) or my doctor

> getting innundated with phone calls (all of wich my counceller clamed

> she hadnt called my doc that one day...)

>

> Anyways I can finaly get all my adaptive tech! Finaly i can read like

> everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> can hear on. Finaly I can afford to get proper diet suplements. Finaly

> I can get the meds i should be on. I can get listening devices. I can

> get stuff for my back and I can get mobility stuff. Finaly I can get a

> bed shaker so I can be woken up. I can get the screen reader, I can get

> JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> to make my life better! Finaly!

>

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

YAY love u

>

> Well after fighting since mid 2004, I have some GOOD news! (finaly!)

>

> I got accepted for ontario dissability funding. I dunno if it was the

> letters last summer to the odsp office (um i think i was very very

> insistant and wasnt going to take no for an answere) or my doctor

> getting innundated with phone calls (all of wich my counceller clamed

> she hadnt called my doc that one day...)

>

> Anyways I can finaly get all my adaptive tech! Finaly i can read like

> everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> can hear on. Finaly I can afford to get proper diet suplements. Finaly

> I can get the meds i should be on. I can get listening devices. I can

> get stuff for my back and I can get mobility stuff. Finaly I can get a

> bed shaker so I can be woken up. I can get the screen reader, I can get

> JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> to make my life better! Finaly!

>

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

thats really cool Chantelle Does that mean like u get a fortnightly

payment? thatis really cool!

>

> YAY love u

>

>

> >

> > Well after fighting since mid 2004, I have some GOOD news! (finaly!)

> >

> > I got accepted for ontario dissability funding. I dunno if it was the

> > letters last summer to the odsp office (um i think i was very very

> > insistant and wasnt going to take no for an answere) or my doctor

> > getting innundated with phone calls (all of wich my counceller clamed

> > she hadnt called my doc that one day...)

> >

> > Anyways I can finaly get all my adaptive tech! Finaly i can read like

> > everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> > can hear on. Finaly I can afford to get proper diet suplements. Finaly

> > I can get the meds i should be on. I can get listening devices. I can

> > get stuff for my back and I can get mobility stuff. Finaly I can get a

> > bed shaker so I can be woken up. I can get the screen reader, I can get

> > JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> > to make my life better! Finaly!

> >

> > Now I need to go sleep. i was soooo stressed out and now I can just

> > breath again. I dont need to be so tence.

> >

> > Tuesday is my Psyc evaluation.

> >

> > Chantelle

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; 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

> >

> > 8th International

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

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

> >

[Guest guest]

thats really cool Chantelle Does that mean like u get a fortnightly

payment? thatis really cool!

>

> YAY love u

>

>

> >

> > Well after fighting since mid 2004, I have some GOOD news! (finaly!)

> >

> > I got accepted for ontario dissability funding. I dunno if it was the

> > letters last summer to the odsp office (um i think i was very very

> > insistant and wasnt going to take no for an answere) or my doctor

> > getting innundated with phone calls (all of wich my counceller clamed

> > she hadnt called my doc that one day...)

> >

> > Anyways I can finaly get all my adaptive tech! Finaly i can read like

> > everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> > can hear on. Finaly I can afford to get proper diet suplements. Finaly

> > I can get the meds i should be on. I can get listening devices. I can

> > get stuff for my back and I can get mobility stuff. Finaly I can get a

> > bed shaker so I can be woken up. I can get the screen reader, I can get

> > JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> > to make my life better! Finaly!

> >

> > Now I need to go sleep. i was soooo stressed out and now I can just

> > breath again. I dont need to be so tence.

> >

> > Tuesday is my Psyc evaluation.

> >

> > Chantelle

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; 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

> >

> > 8th International

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

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

> >

[Guest guest]

Chantelle,

This is such wonderful news. To be able to get the supports you need

that will allow your gifts to shine and to be relieved of the stress

of trying to do it all yourslef!

Kim

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

CHARGE Syndrome Foundation; 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

>

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Chantelle,

This is such wonderful news. To be able to get the supports you need

that will allow your gifts to shine and to be relieved of the stress

of trying to do it all yourslef!

Kim

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

CHARGE Syndrome Foundation; 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

>

> 8th International

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

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Yes brilliant news, well done Lesley xx

> > Now I need to go sleep. i was soooo stressed out and now I can

just

> > breath again. I dont need to be so tence.

> >

> > Tuesday is my Psyc evaluation.

> >

> > Chantelle

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

> >

> > Membership of this email support group does not constitute

membership in the CHARGE Syndrome Foundation; 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

> >

> > 8th International

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

available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Fabulous news!!! As you get stuff, I'd love to hear what things are helpful

and how they help. It's hard as a parent to know what kinds of things to

ask for Aubrie and what to expect might be helpful in the future.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Fabulous news!!! As you get stuff, I'd love to hear what things are helpful

and how they help. It's hard as a parent to know what kinds of things to

ask for Aubrie and what to expect might be helpful in the future.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I will deffinatly let you guys know what works well for me. How much vision

and hearing loss does Aubrie have? I think a cctv (closed captioned tv) is a

must for most any visualy impared kid.

Chantelle

[Guest guest]

I will deffinatly let you guys know what works well for me. How much vision

and hearing loss does Aubrie have? I think a cctv (closed captioned tv) is a

must for most any visualy impared kid.

Chantelle

[Guest guest]

I will deffinatly let you guys know what works well for me. How much vision

and hearing loss does Aubrie have? I think a cctv (closed captioned tv) is a

must for most any visualy impared kid.

Chantelle

[Guest guest]

Aubrie has near-normal vision in one eye and near-normal hearing in one ear.

She has problems with distance vision and sound localization. The " f " is

the worst sound for her to hear. She's so young that it's hard to know what

she sees well and what she does not. I asked her today about seeing the

board at school and worksheets. Sometimes the images on worksheets are too

small so she uses a magnifier or they enlarge the copy. She says she can

see the board. The teacher has her seated right up front and uses a white

dry-erase board with black marker. She has never complained about not

seeing the TV and she doesn't make an effort to sit right up close.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Aubrie has near-normal vision in one eye and near-normal hearing in one ear.

She has problems with distance vision and sound localization. The " f " is

the worst sound for her to hear. She's so young that it's hard to know what

she sees well and what she does not. I asked her today about seeing the

board at school and worksheets. Sometimes the images on worksheets are too

small so she uses a magnifier or they enlarge the copy. She says she can

see the board. The teacher has her seated right up front and uses a white

dry-erase board with black marker. She has never complained about not

seeing the TV and she doesn't make an effort to sit right up close.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Aubrie has near-normal vision in one eye and near-normal hearing in one ear.

She has problems with distance vision and sound localization. The " f " is

the worst sound for her to hear. She's so young that it's hard to know what

she sees well and what she does not. I asked her today about seeing the

board at school and worksheets. Sometimes the images on worksheets are too

small so she uses a magnifier or they enlarge the copy. She says she can

see the board. The teacher has her seated right up front and uses a white

dry-erase board with black marker. She has never complained about not

seeing the TV and she doesn't make an effort to sit right up close.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Seems like Aubrie has similar to what i had as a youngster. My vision in my

good eye was near normal (same with good ear) and so it seems like i coped

really well. Does Aubrie have any visual field restriction in her good eye?

Sometimes enlarging text and using a bigger paper is combersom.

Last semester i had all my textbook put on extra large text and it was in

this really big paper. Each chapter is huge and to be honest, i didnt read

much of the text because it was a pain to carry the chapters around! My

sympathy goes out to brail readers! OMG! Id rather listen to the chapter on

audio, even with my hearing loss. I wish i had the upper body strength to

carry all those enlarged text chapters or some heavy brail books. Not a

really practical solution for chargers im afraid, lol!

I dont know if there are cheap cctv's but that might be something you want

to consider in a couple years.

I still need to figure out what hearing devices i need. I will definatly

keep the list updated with what devices worked the best for me. I know a lot

of the ones im going to start with are more school related, but I will look

into some that might assist with personal living as well.

>

> Aubrie has near-normal vision in one eye and near-normal hearing in one

> ear.

> She has problems with distance vision and sound localization....

[Guest guest]

Congratulations

persistance finally paid off

i'm so glad you're finally going to get the adaptive tech and basic supplies

that you need!!!

Cole

>

> Well after fighting since mid 2004, I have some GOOD news! (finaly!)

>

> I got accepted for ontario dissability funding. I dunno if it was the

> letters last summer to the odsp office (um i think i was very very

> insistant and wasnt going to take no for an answere) or my doctor

> getting innundated with phone calls (all of wich my counceller clamed

> she hadnt called my doc that one day...)

>

> Anyways I can finaly get all my adaptive tech! Finaly i can read like

> everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> can hear on. Finaly I can afford to get proper diet suplements. Finaly

> I can get the meds i should be on. I can get listening devices. I can

> get stuff for my back and I can get mobility stuff. Finaly I can get a

> bed shaker so I can be woken up. I can get the screen reader, I can get

> JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> to make my life better! Finaly!

>

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

>

>

>

[Guest guest]

Congratulations

persistance finally paid off

i'm so glad you're finally going to get the adaptive tech and basic supplies

that you need!!!

Cole

>

> Well after fighting since mid 2004, I have some GOOD news! (finaly!)

>

> I got accepted for ontario dissability funding. I dunno if it was the

> letters last summer to the odsp office (um i think i was very very

> insistant and wasnt going to take no for an answere) or my doctor

> getting innundated with phone calls (all of wich my counceller clamed

> she hadnt called my doc that one day...)

>

> Anyways I can finaly get all my adaptive tech! Finaly i can read like

> everyone elce. Finaly i can get new glasses. Finaly I can get a phone i

> can hear on. Finaly I can afford to get proper diet suplements. Finaly

> I can get the meds i should be on. I can get listening devices. I can

> get stuff for my back and I can get mobility stuff. Finaly I can get a

> bed shaker so I can be woken up. I can get the screen reader, I can get

> JAWS and other adaptive stuff for my computer. Finaly I can get stuff

> to make my life better! Finaly!

>

> Now I need to go sleep. i was soooo stressed out and now I can just

> breath again. I dont need to be so tence.

>

> Tuesday is my Psyc evaluation.

>

> Chantelle

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

>

>

>

[Guest guest]

Chantelle-

Your personal experience is such a help. Aubrie seems to compensate fine.

We don't know of any visual field restrictions in her good eye. We haven't

been successful in field testing yet. When we offer her modifications, she

may like them at first, but then she just goes back to managing with things

as they are. We enlarge her math basic facts tests. Those were hard when

small -- her written answers over-filled the space so they went into the

next problems.

I was surprised how much trouble she had learning to identify coins. She's

beginning to get it now. And with a large watch with clear numbers, she's

telling time! It occurred to me yesterday that she can't see the clock in

the classroom so does not have the benefit of knowing what time it is

through the day so we are going to start wearing her watch routinely. It's

new so it wasn't an option before.

I saw a cool device at an expo. It could magnify a paper from the desk or

it could be turned to magnify something far away -- a chalkboard, TV, stage

production, whatever. It was portable and offered so many options. I can

see that being very helpful to Aubrie one day. But by then, who knows what

else will be available too!

When working on her email, she chooses a huge font and asks those emailing

her to reply in large font. That helps. She can read the regular font on

the screen to find icons etc but it's too difficult to enjoy reading an

entire email.

If you haven't had new hearing aids in a while, you may be pleasantly

surprised at how far the technology has come. Aubrie got new ones this

summer and they are incredible! She also got a new wireless FM system for

school that is great.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Chantelle-

Your personal experience is such a help. Aubrie seems to compensate fine.

We don't know of any visual field restrictions in her good eye. We haven't

been successful in field testing yet. When we offer her modifications, she

may like them at first, but then she just goes back to managing with things

as they are. We enlarge her math basic facts tests. Those were hard when

small -- her written answers over-filled the space so they went into the

next problems.

I was surprised how much trouble she had learning to identify coins. She's

beginning to get it now. And with a large watch with clear numbers, she's

telling time! It occurred to me yesterday that she can't see the clock in

the classroom so does not have the benefit of knowing what time it is

through the day so we are going to start wearing her watch routinely. It's

new so it wasn't an option before.

I saw a cool device at an expo. It could magnify a paper from the desk or

it could be turned to magnify something far away -- a chalkboard, TV, stage

production, whatever. It was portable and offered so many options. I can

see that being very helpful to Aubrie one day. But by then, who knows what

else will be available too!

When working on her email, she chooses a huge font and asks those emailing

her to reply in large font. That helps. She can read the regular font on

the screen to find icons etc but it's too difficult to enjoy reading an

entire email.

If you haven't had new hearing aids in a while, you may be pleasantly

surprised at how far the technology has come. Aubrie got new ones this

summer and they are incredible! She also got a new wireless FM system for

school that is great.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Chantelle-

Your personal experience is such a help. Aubrie seems to compensate fine.

We don't know of any visual field restrictions in her good eye. We haven't

been successful in field testing yet. When we offer her modifications, she

may like them at first, but then she just goes back to managing with things

as they are. We enlarge her math basic facts tests. Those were hard when

small -- her written answers over-filled the space so they went into the

next problems.

I was surprised how much trouble she had learning to identify coins. She's

beginning to get it now. And with a large watch with clear numbers, she's

telling time! It occurred to me yesterday that she can't see the clock in

the classroom so does not have the benefit of knowing what time it is

through the day so we are going to start wearing her watch routinely. It's

new so it wasn't an option before.

I saw a cool device at an expo. It could magnify a paper from the desk or

it could be turned to magnify something far away -- a chalkboard, TV, stage

production, whatever. It was portable and offered so many options. I can

see that being very helpful to Aubrie one day. But by then, who knows what

else will be available too!

When working on her email, she chooses a huge font and asks those emailing

her to reply in large font. That helps. She can read the regular font on

the screen to find icons etc but it's too difficult to enjoy reading an

entire email.

If you haven't had new hearing aids in a while, you may be pleasantly

surprised at how far the technology has come. Aubrie got new ones this

summer and they are incredible! She also got a new wireless FM system for

school that is great.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I wish i could say i did this on my own or self avocated but i didnt. I dont

know how to say it without what i say coming out sounding just wrong. (I

just deleted several paragraphs explaining why its not self advocating but

anyways...)

Basicaly I had a ton of help that involved a lot of people. Have to say the

list did play a big part too.

Thats all im gonna say.

Chantelle

[Guest guest]

I wish i could say i did this on my own or self avocated but i didnt. I dont

know how to say it without what i say coming out sounding just wrong. (I

just deleted several paragraphs explaining why its not self advocating but

anyways...)

Basicaly I had a ton of help that involved a lot of people. Have to say the

list did play a big part too.

Thats all im gonna say.

Chantelle

[Guest guest]

Chantelle-

You had to self-advocate getting all those folks coordinated to help you.

Just appealing to them to do whatever it is they did was self-advocating.

Don't sell yourself short. If you didn't speak up for your needs and speak

up to the right people and do it over and over again til they listened and

responded, you wouldn't have what you need. You may think all you did was

sit back and whine while everyone else did all the " important " work. I

don't think that's exactly right. Pat yourself on the back as you thank all

those who supported and helped you.

One big lesson I learned when I had Aubrie was how to ask for help and then

how to graciously accept it. Heck, just admitting I needed help was a big

step! Anyway, I understand you don't want to take all the credit -- go

ahead and share it -- but don't sell yourself short. " Self-advocating "

doesn't mean doing it all alone. It means being a part of the process.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ