Re: First Impressions from Aubrie's neuropsych eval

[Guest guest]

Michele,

great idea on hiring an advocate!! A good 'outside " advocate and you will be a

dynamic team for little Miss.

pam

> ----------

> From: CHARGE on behalf of Michele Westmaas

> Reply To: CHARGE

> Sent: Wednesday, May 3, 2006 11:58 AM

> To: CHARGE

> Subject: RE: First Impressions from Aubrie's neuropsych eval

>

> Kim-

> Thanks for the info and for keeping us in mind. I will send the report.

> Turns out we don't get it on Fri. That will be just a consult -- going

> through the testing results in detail. Then she writes up the report -- so

> it'll be another week or so.

>

> I hired an advocate yesterday to attend the next IEP meetings with me. It's

> time that things simply get done right -- right now. I can't keep going

> along making some progress each time. The tortoise and hare theory doesn't

> work with that cuz I've got to get all the progress made in time for her

> education!! My stomach is in knots just thinking about it.

>

> Michele W

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

>

>

>

>

> 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]

Michele,

great idea on hiring an advocate!! A good 'outside " advocate and you will be a

dynamic team for little Miss.

pam

> ----------

> From: CHARGE on behalf of Michele Westmaas

> Reply To: CHARGE

> Sent: Wednesday, May 3, 2006 11:58 AM

> To: CHARGE

> Subject: RE: First Impressions from Aubrie's neuropsych eval

>

> Kim-

> Thanks for the info and for keeping us in mind. I will send the report.

> Turns out we don't get it on Fri. That will be just a consult -- going

> through the testing results in detail. Then she writes up the report -- so

> it'll be another week or so.

>

> I hired an advocate yesterday to attend the next IEP meetings with me. It's

> time that things simply get done right -- right now. I can't keep going

> along making some progress each time. The tortoise and hare theory doesn't

> work with that cuz I've got to get all the progress made in time for her

> education!! My stomach is in knots just thinking about it.

>

> Michele W

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

>

>

>

>

> 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]

Pam-

It's making me a nervous wreck... but I do think it's the right step. We

has a meeting scheduled next Wed and the advocate can't make that one.

Rather than canceling, I am keeping it as an information-gathering session.

At least we'll get it all out on the table and have a good idea of where the

conflicts are before we reconvene with the advocate. If they are really

worried, maybe they'll just do it all right at the first meeting! Ha...

Michele W

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

RE: First Impressions from Aubrie's neuropsych eval

Michele,

great idea on hiring an advocate!! A good 'outside " advocate and you will be

a dynamic team for little Miss.

pam

[Guest guest]

Pam-

It's making me a nervous wreck... but I do think it's the right step. We

has a meeting scheduled next Wed and the advocate can't make that one.

Rather than canceling, I am keeping it as an information-gathering session.

At least we'll get it all out on the table and have a good idea of where the

conflicts are before we reconvene with the advocate. If they are really

worried, maybe they'll just do it all right at the first meeting! Ha...

Michele W

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

RE: First Impressions from Aubrie's neuropsych eval

Michele,

great idea on hiring an advocate!! A good 'outside " advocate and you will be

a dynamic team for little Miss.

pam

[Guest guest]

Flo-

It's so frustrating tho. I know my arguments. I do mean business. But

still, they can wear me down or give me a nibble. I just don't have the

energy that the advocate will have since he's not burdened with my emotional

stuff and my part of being in this small town community. It just shouldn't

have to come to this.

Michele W

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

Re: First Impressions from Aubrie's neuropsych eval

Michele,

Different situation, similar story. We had a sort of lockhorn situation

with the cochlear implant audiologist. After several meetings, we requested

one more to which we took an advocate. She had known he was coming so she

armed herself with a couple of her team members, presumably safety in

numbers! Long story short, we have never known her to be so forthcoming and

informative, and the advocate barely needed to say anything; only to be

present although he would have said plenty if she had not done a 360 degree

turn.

You go girl. Think of it as being possibly the only way Aubrie will get

what she needs and they will know you mean business. The very best of luck

for the meeting!

Flo

[Guest guest]

Flo-

It's so frustrating tho. I know my arguments. I do mean business. But

still, they can wear me down or give me a nibble. I just don't have the

energy that the advocate will have since he's not burdened with my emotional

stuff and my part of being in this small town community. It just shouldn't

have to come to this.

Michele W

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

Re: First Impressions from Aubrie's neuropsych eval

Michele,

Different situation, similar story. We had a sort of lockhorn situation

with the cochlear implant audiologist. After several meetings, we requested

one more to which we took an advocate. She had known he was coming so she

armed herself with a couple of her team members, presumably safety in

numbers! Long story short, we have never known her to be so forthcoming and

informative, and the advocate barely needed to say anything; only to be

present although he would have said plenty if she had not done a 360 degree

turn.

You go girl. Think of it as being possibly the only way Aubrie will get

what she needs and they will know you mean business. The very best of luck

for the meeting!

Flo

[Guest guest]

Michele,

I think brining an advocate is good for everyone in the good times and the

bad. An advocate is someone who isn't taking all the information in as parents

so they can step outside that emotional part and hear what a parent can't

sometimes. They also can say what a parent is saying and be heard.

A good advocate is one who helps the team talk and work together!

Best of luck.

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

[Guest guest]

Michele,

I think brining an advocate is good for everyone in the good times and the

bad. An advocate is someone who isn't taking all the information in as parents

so they can step outside that emotional part and hear what a parent can't

sometimes. They also can say what a parent is saying and be heard.

A good advocate is one who helps the team talk and work together!

Best of luck.

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

[Guest guest]

Michele,

I think brining an advocate is good for everyone in the good times and the

bad. An advocate is someone who isn't taking all the information in as parents

so they can step outside that emotional part and hear what a parent can't

sometimes. They also can say what a parent is saying and be heard.

A good advocate is one who helps the team talk and work together!

Best of luck.

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