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Michele,

Doing fine isn't good enough. Not now not ever.

Raising the child to be functioning at their fullest potential is the only

way. And that means you have to find the experts out there who will be able to

appropriately test for that potential. I never allowed testing at all until

Perkins. Otherwise those in our school system limited Patty incredibly. I

mean INCREDIBLY. We used running records instead. Testing for that potential

needs to be done only by specialists who know which test to give, how to modify

that to meet the child's needs, and then you need to have the expert be able

to interpret the outcomes to then make recommendations. These recommendations

need to be specific and appropriate for her and her alone.

Oh, and watch out for interpretation of scores. Remember there is no

evaluation which has been made that is normed for those children who are deaf.

If

there isn't a realistic eval for the deaf then you must know there isn't one

normed for deaf/blind and there sure isn't one for multiply disabled children

who

have CHARGE. With that being said though there are numerous evaluations

which can be done by true experts, interpreted by true experts who have

knowledge

of CHARGE and dual sensory impairments, and recommendations can be made-only

by those experts.

Sliding by isn't good enough.

Bonnie

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Michele,

Doing fine isn't good enough. Not now not ever.

Raising the child to be functioning at their fullest potential is the only

way. And that means you have to find the experts out there who will be able to

appropriately test for that potential. I never allowed testing at all until

Perkins. Otherwise those in our school system limited Patty incredibly. I

mean INCREDIBLY. We used running records instead. Testing for that potential

needs to be done only by specialists who know which test to give, how to modify

that to meet the child's needs, and then you need to have the expert be able

to interpret the outcomes to then make recommendations. These recommendations

need to be specific and appropriate for her and her alone.

Oh, and watch out for interpretation of scores. Remember there is no

evaluation which has been made that is normed for those children who are deaf.

If

there isn't a realistic eval for the deaf then you must know there isn't one

normed for deaf/blind and there sure isn't one for multiply disabled children

who

have CHARGE. With that being said though there are numerous evaluations

which can be done by true experts, interpreted by true experts who have

knowledge

of CHARGE and dual sensory impairments, and recommendations can be made-only

by those experts.

Sliding by isn't good enough.

Bonnie

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Bonnie-

Thanks. Keep me motivated and inspired. When it gets tough, it's hard

to keep plugging along. I feel for Pam who is hearing all these

conversations and can't help but realize how much I am counting on this

eval at Perkins. But the eval isn't the end... then it's getting all

the things we need to be done.

Michele W

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Martha,

stop sewing!!! Pin them up to the proper height and I will sew them for you and

Kate--it is one domestic thing I am pretty good at!

pam

> ----------

> From: lewcap@...

> Reply To: CHARGE

> Sent: Tuesday, September 7, 2004 11:15 PM

> To: CHARGE

> Subject: RE: cool software

>

> Having the proper documentation reminds me: save everything, and I do

> mean everything. If you have to enter litigation, you'll need copies of every

> letter written, etc. Keep good computer files. Keep a school/home

> notebook. Send letters so that you get a receipt. Just stash everything

> where you can eventually find it. Been there, done that, but we still miss

> things... goes back to Perkins at the end of the week and this

> non-seamstress must hem 6 pairs of overalls. They look awful...Martha

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

>

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Martha,

stop sewing!!! Pin them up to the proper height and I will sew them for you and

Kate--it is one domestic thing I am pretty good at!

pam

> ----------

> From: lewcap@...

> Reply To: CHARGE

> Sent: Tuesday, September 7, 2004 11:15 PM

> To: CHARGE

> Subject: RE: cool software

>

> Having the proper documentation reminds me: save everything, and I do

> mean everything. If you have to enter litigation, you'll need copies of every

> letter written, etc. Keep good computer files. Keep a school/home

> notebook. Send letters so that you get a receipt. Just stash everything

> where you can eventually find it. Been there, done that, but we still miss

> things... goes back to Perkins at the end of the week and this

> non-seamstress must hem 6 pairs of overalls. They look awful...Martha

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

>

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Unfortunately the regular classroom teacher does not have the skills

or specialized knowledge for things such as advancing technology, O & M,

assistive devices, etc. As well, the regular curriculum seems to take

up SO much of the time, (but especially for the kids like those with

CHARGE, MORE time to initiate language,write down the answers,....)

An expanded core curriculum needs to be agreed on in the IEP, and the

regular teacher needs to understand that less quantity demands can be

placed on the individual. Evaluation can be based on enough sample

work or other specialised testing so the teacher knows the basic

concepts or basic ideas have been understood. It may be necessary to

withdraw from the classroom for specialized learning, ie.keyboarding

class early on for example. " Best practices " do not always mean the

best or most up to date technology depending on the school board or

district. Sometimes private service providers are necessary (in the

summer or holiday time for example) so that when returning to the

class, the child can bring those skills in with them. In Ontario now

for example, there is a private vision technology resource center that

has just opened for private consultations and classes. This is partly

due to technology is changing soooo quickly, it is simply too costly

to keep providing updated training time for many specialized teachers.

There is also Canadian National Institute for the Blind who provides

technology teaching services. So perhaps for what you are thinking

the " best of the best " could be, may not be provided strickly within

the school system.

Ann Gloyn

Education Specialist

Canada

> Pam-

> Everything you said made sense. Now my question is how to implement

> all those things in the classroom in a way that is effective. Specific

> plans for technology learning, specific curriculum etc.

>

> And if the school does not have the provide the " Best " and " maximize

> potential " , then how do we determine what is " appropriate " and what is

> " above and beyond " ?

>

> I am in a very confusing frame of mind lately. Part could be lack of

> sleep and stress, but part is just that these issues are so complex for

> me. I hope that you guys can help me sort it out in a way that I can

> bring it back and make a difference. There may be things that don't

> need to be done, but the things that do need to be done, need to be

done

> now. How's that for " did I make sense " ??

>

> More later--

> Michele W

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Pam: I want to hug you, but we won't get to see you on Friday, therefore

can't until November. . I've managed to hem 2-3 pairs of overalls but am

balking at doing more at 11:00. I cannot believe that this could be 's

last year with ya'll and might just cry and cry. Martha

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Pam: Oops: if you're really serious, just double the hem. I doubt that we'll

have room in 's suitcase to bring the overalls with us, but I'll ship

them. I bet you never thought you'd be sewing at Perkins! Martha

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