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Thanks Sheri. I had planned to do that....have a new position at work and

can't post from there as much as I like.

>From: sbyrne1281@...

>Reply-To: Listen-Uponelist

>To: Listen-Uponelist

>Subject: Re: New to the List

>Date: Wed, 1 Mar 2000 22:34:12 EST

>

>

>Unfortunately, Lead Line was shutdown while you were offline (I think

>Barbara retired)

>

>If someone hasn't previously posted this, Kay's ever-useful hearing aid

>funding URL is

>

>http://www.listen-up.org/haidfund.htm

>

>Sheri

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

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In a message dated 3/1/2000 11:55:02 PM Eastern Standard Time,

scaruso3@... writes:

<< apparently

insurance companies don't feel that acquiring speech and language is

that important, nor is hearing loss a medical issue. >>

It isn't a medical issue to them. We were told that " hearing loss is an

educational issue....not a medical issue " by an insurance company when we

requested coverage for speech therapy by a professional not on their approved

list. None on the list were qualified to work with my deaf child and

admitted it. Finally they agreed to pay with the lifetime benefit of

$5,000.00. NOW, how much speech therapy do you think that is? NOT MUCH!

The unqualified person we saw i made $20-25 an hour but the hospital charged

us (sit down) $168 a session. The person that had dealt with deaf children

before charged about $50 an hour.

Medical benefits can be a real rip-off sometimes. Blue Cross won't buy

hearing aids but they paid $58 thousand for Jake's CI, surgeon and anesthesia

fees and a CAT scan under general anesthesia. What sense does that make?

Off to bed,

Elaine B

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  • 2 weeks later...
Guest guest

Hi Celeste, My name is & I'm fairly new to this site. You appear to be

extremely knowledgeable from a legal standpoint & I would like to know if you

have any pointers as far as sending my child to a summer camp & requesting a

transliterator for her. she is moderat to severe & I worry once the hearing

aids come out during water activties-she is really at a loss. Also I am

thinking of sending her to a pivate school next year & was wondering about

state service & their obligations under the Disabilites act. Any

suggestions???

Thanks for your time

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Guest guest

Celeste,

Thank you for the wealth of info. We have contacted Early Intervention and

they are going to be paying for Em's hearing aids which we will be getting in

the next month or so.

Thanks to all of you who took the time to show me compassion and to share

your knowledge and experience. I am looking forward to the journey ahead

because it will unlock a world of communication for my daughter. You are all

an inspiration.

Jen

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  • 1 month later...
Guest guest

Hi all,

I'm new to the list. I am HOH as is my DH and 2 DS, , 4 in May and

almost 16mos. My loss is from birth and my DH is a later onset,

progressive loss which starts in late teens, early twenties. Both my boys

appear to have my type of loss at this point and both are receiving services

through a Parent-Infant Program in our county school system. gets

weekly home visits with a teacher and attends preschool every day in

the afternoon. I look forward to hearing from you all and hope to be able

to help with any questions or problems you all may have.

D.

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Guest guest

Welcome to the list ! I've learned so much from this list. I think that

there are two other mothers who are D/HOH. I'm curious to know what language

approach do you take? My 4yo daughter is HOH and wears hearing aids and an FM

system. She is oral. We just decided to go oral with her this school year and

she has progressed amazingly! Good luck to you. Glad you found this list.

Suzette

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  • 2 years later...

Hi!

Yes, I'm very familar with Deafblindness. My husband is Deaf/Blind and with

Usher's Syndrome, plus 2 other famiily members, and cousins. CHARGE syndrome

is relatively new to me. I've followed the student that I will have since

she was 6 years old. She is now in 9th grade and for the first time I will

have her in my class. I'm very excited to be working with her this year.

But I'm curious if there are any activities that I can do to work with her in

comprehension and social skills. Teachers before me did not work with her

consistantly. I will hopefully have her for 4-5 years. I want to include

Braille, but she is very emotionally, so I'm not sure if this would be good

or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

also I want to include signwriting with her, since it seems the other

teachers before tried to use pictures with her words. Anyways, thank you so

much for your response and any feedback is really helpful to me!

Thank you!

Cole

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Hi!

Yes, I'm very familar with Deafblindness. My husband is Deaf/Blind and with

Usher's Syndrome, plus 2 other famiily members, and cousins. CHARGE syndrome

is relatively new to me. I've followed the student that I will have since

she was 6 years old. She is now in 9th grade and for the first time I will

have her in my class. I'm very excited to be working with her this year.

But I'm curious if there are any activities that I can do to work with her in

comprehension and social skills. Teachers before me did not work with her

consistantly. I will hopefully have her for 4-5 years. I want to include

Braille, but she is very emotionally, so I'm not sure if this would be good

or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

also I want to include signwriting with her, since it seems the other

teachers before tried to use pictures with her words. Anyways, thank you so

much for your response and any feedback is really helpful to me!

Thank you!

Cole

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I was not clear by your message if you were familiar with people who had a

combined vision and hearing loss or knew people with one or the other.

Deafblindness is a unique field. There is a wealth of information out

there. I would start by consulting your states (If you are in the US)

Deafblind project. I congratulate you on recognizing this student's

potential and welcome to the list.

Kim Lauger

Mother to Dylan 6, CHARGE, Kayla 11, Tyler 14, wife to Roy

----------

>

>To: CHARGE

>Subject: New to the list

>Date: Fri, Aug 16, 2002, 8:03 PM

>

> Hello, my name is Cole and I'm a Deaf Educator with a student

> with CHARGE syndrome. I'm really new to this, but I have some

> experience with Deaf/Blind from my husband, and I, myself am Deaf. I

> feel that this student has many capabilities, but I'm unsure as what

> activities I can use to build her social skills and reading

> comprehension. She is already in 9th grade, so this presents me with

> a challenge. IF there is any website with suggested lesson or

> activites that you might recommend to me, please do. She is a very

> smart young girl and I would like high expectations for her, even

> though it seems that many teachers aren't willing to give that to

> her. Any comments would be deeply appreciated:)

>

> Smiles

> Cole

>

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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I was not clear by your message if you were familiar with people who had a

combined vision and hearing loss or knew people with one or the other.

Deafblindness is a unique field. There is a wealth of information out

there. I would start by consulting your states (If you are in the US)

Deafblind project. I congratulate you on recognizing this student's

potential and welcome to the list.

Kim Lauger

Mother to Dylan 6, CHARGE, Kayla 11, Tyler 14, wife to Roy

----------

>

>To: CHARGE

>Subject: New to the list

>Date: Fri, Aug 16, 2002, 8:03 PM

>

> Hello, my name is Cole and I'm a Deaf Educator with a student

> with CHARGE syndrome. I'm really new to this, but I have some

> experience with Deaf/Blind from my husband, and I, myself am Deaf. I

> feel that this student has many capabilities, but I'm unsure as what

> activities I can use to build her social skills and reading

> comprehension. She is already in 9th grade, so this presents me with

> a challenge. IF there is any website with suggested lesson or

> activites that you might recommend to me, please do. She is a very

> smart young girl and I would like high expectations for her, even

> though it seems that many teachers aren't willing to give that to

> her. Any comments would be deeply appreciated:)

>

> Smiles

> Cole

>

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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Thank you so much for the very helpful information!! Please if you could

email me privately at ncicewolf@..., then I can give you my address to

send any material that would help my student.

You've been extremely helpful!

Thank you:)

Smiles

Cole

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Dear ,

Welcome to the list! I hope you learn as much from us as I am sure we will

learn from you.

Our daughter will be starting 9th grade this year. She has had a number of

factors that have not been optimal in terms of school, but is on a very

good track now. Perhaps some of what we have learned will be of help with

your student.

Our daughter has colobomas and is profoundly deaf. She has cortical vision

impairment I believe as well. She uses sign to communicate and receive

information as well as written communication and picture exchange

communication.

For each child I think there is a way to communicate that jumps out at you

and seems to be the most efficient way to communicate. For each child this

will be different. For Kendra, printed materials are by far the easiest

way for her to access information. She seems to have difficulty processing

moving visual information and sign language is therefore difficult for

her. However, glasses have helped tremendously in her ability to access

signed information. Occupational therapy, eye therapy, and HANDLE

http://www.handle.org exercises have all also helped.

In addition to the visual processing difficulty, Kendra also has limb

apraxia. An American Sign Language researcher diagnosed Kendra with this

condition. This affects her ability to use her expressive sign and she is

making significant headway in overcoming it with occupational therapy and

certain dietary approaches.

The dietary approaches are helping in learning in general, attention,

focusing, comprehension and language use and acquisition in specific.

Due to all of the above factors, here is a short description of what seems

to be the ideal approach for teaching Kendra based on what I know at this time.

Classroom access to information is different than access to information in

a home or 1:1 setting, so I will focus on the classroom for now as you are

a teacher. In order for Kendra to access information visually she must be

seated where there are no obstructions to the teacher and at a good angle

for her. Next, if the material is familiar, Kendra can access the signing

in this manner. If the material is new, such as a book being read and

signed, Kendra would need someone to sit with her and either sign the

material to her individually or to write what is being said. Pairing the

writing with simple drawings helps Kendra understand the idea as well. An

intervenor or aide are the people who often can perform this kind of

assistance.

For expressive communication, Kendra's limb apraxia (or idiomotor apraxia)

slows her down significantly and having access to a communication book that

has printed words that Kendra can access helps her express herself. If the

student is not reading, these words could be symbols or could be concrete

objects. We feel information from the PECS website and a PECS workshop

really helped us utilize this approach. We also are impressed for Kendra

with information from the APRICOT system which utilizes line drawings to

clarify more abstract concepts.

I'd be happy to send samples of what I am describing if that could be of

help. Each student is at a different place developmentally and

linguistically and I think sometimes there is a tendency to push a child

too quickly or not encourage enough and therefor limit progress. I am so

impressed that you are seeking information because that is the mark of an

ideal teacher for children with CHARGE. Ann Gloyn is noted for mentioning

that certain underpinnings must be in place before language learning and

usage actually takes place, so it is really important to try to be sure the

underpinnings are there. My opinion is that occupational therapy and/or

sensory integration therapy is usually helpful for kids with CHARGE.

For my daughter and possibly for your student, positive reinforcement and

measured steps are really beneficial. Kendra has a friend in her class

(the child also has CHARGE but communicates excellently already with sign)

who takes her under her wing and teaches her how to interact. If you can

arrange for such a student to interact and be-friend your student it may

prove an excellent way to increase language and to improve social

interaction learning, confidence and happiness.

Once more I welcome you and commend you for your interest and dedication!

Best wishes,

Mom to Kendra, and Camille

California

At 10:58 AM 8/17/02 -0400, you wrote:

>Hi!

>

>Yes, I'm very familar with Deafblindness. My husband is Deaf/Blind and with

>Usher's Syndrome, plus 2 other famiily members, and cousins. CHARGE syndrome

>is relatively new to me. I've followed the student that I will have since

>she was 6 years old. She is now in 9th grade and for the first time I will

>have her in my class. I'm very excited to be working with her this year.

>But I'm curious if there are any activities that I can do to work with her in

>comprehension and social skills. Teachers before me did not work with her

>consistantly. I will hopefully have her for 4-5 years. I want to include

>Braille, but she is very emotionally, so I'm not sure if this would be good

>or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

>also I want to include signwriting with her, since it seems the other

>teachers before tried to use pictures with her words. Anyways, thank you so

>much for your response and any feedback is really helpful to me!

>

>Thank you!

> Cole

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Dear ,

Welcome to the list! I hope you learn as much from us as I am sure we will

learn from you.

Our daughter will be starting 9th grade this year. She has had a number of

factors that have not been optimal in terms of school, but is on a very

good track now. Perhaps some of what we have learned will be of help with

your student.

Our daughter has colobomas and is profoundly deaf. She has cortical vision

impairment I believe as well. She uses sign to communicate and receive

information as well as written communication and picture exchange

communication.

For each child I think there is a way to communicate that jumps out at you

and seems to be the most efficient way to communicate. For each child this

will be different. For Kendra, printed materials are by far the easiest

way for her to access information. She seems to have difficulty processing

moving visual information and sign language is therefore difficult for

her. However, glasses have helped tremendously in her ability to access

signed information. Occupational therapy, eye therapy, and HANDLE

http://www.handle.org exercises have all also helped.

In addition to the visual processing difficulty, Kendra also has limb

apraxia. An American Sign Language researcher diagnosed Kendra with this

condition. This affects her ability to use her expressive sign and she is

making significant headway in overcoming it with occupational therapy and

certain dietary approaches.

The dietary approaches are helping in learning in general, attention,

focusing, comprehension and language use and acquisition in specific.

Due to all of the above factors, here is a short description of what seems

to be the ideal approach for teaching Kendra based on what I know at this time.

Classroom access to information is different than access to information in

a home or 1:1 setting, so I will focus on the classroom for now as you are

a teacher. In order for Kendra to access information visually she must be

seated where there are no obstructions to the teacher and at a good angle

for her. Next, if the material is familiar, Kendra can access the signing

in this manner. If the material is new, such as a book being read and

signed, Kendra would need someone to sit with her and either sign the

material to her individually or to write what is being said. Pairing the

writing with simple drawings helps Kendra understand the idea as well. An

intervenor or aide are the people who often can perform this kind of

assistance.

For expressive communication, Kendra's limb apraxia (or idiomotor apraxia)

slows her down significantly and having access to a communication book that

has printed words that Kendra can access helps her express herself. If the

student is not reading, these words could be symbols or could be concrete

objects. We feel information from the PECS website and a PECS workshop

really helped us utilize this approach. We also are impressed for Kendra

with information from the APRICOT system which utilizes line drawings to

clarify more abstract concepts.

I'd be happy to send samples of what I am describing if that could be of

help. Each student is at a different place developmentally and

linguistically and I think sometimes there is a tendency to push a child

too quickly or not encourage enough and therefor limit progress. I am so

impressed that you are seeking information because that is the mark of an

ideal teacher for children with CHARGE. Ann Gloyn is noted for mentioning

that certain underpinnings must be in place before language learning and

usage actually takes place, so it is really important to try to be sure the

underpinnings are there. My opinion is that occupational therapy and/or

sensory integration therapy is usually helpful for kids with CHARGE.

For my daughter and possibly for your student, positive reinforcement and

measured steps are really beneficial. Kendra has a friend in her class

(the child also has CHARGE but communicates excellently already with sign)

who takes her under her wing and teaches her how to interact. If you can

arrange for such a student to interact and be-friend your student it may

prove an excellent way to increase language and to improve social

interaction learning, confidence and happiness.

Once more I welcome you and commend you for your interest and dedication!

Best wishes,

Mom to Kendra, and Camille

California

At 10:58 AM 8/17/02 -0400, you wrote:

>Hi!

>

>Yes, I'm very familar with Deafblindness. My husband is Deaf/Blind and with

>Usher's Syndrome, plus 2 other famiily members, and cousins. CHARGE syndrome

>is relatively new to me. I've followed the student that I will have since

>she was 6 years old. She is now in 9th grade and for the first time I will

>have her in my class. I'm very excited to be working with her this year.

>But I'm curious if there are any activities that I can do to work with her in

>comprehension and social skills. Teachers before me did not work with her

>consistantly. I will hopefully have her for 4-5 years. I want to include

>Braille, but she is very emotionally, so I'm not sure if this would be good

>or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

>also I want to include signwriting with her, since it seems the other

>teachers before tried to use pictures with her words. Anyways, thank you so

>much for your response and any feedback is really helpful to me!

>

>Thank you!

> Cole

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: It was so nice to hear the enthusiasm and belief in possibilities that

came through on your 1st.

post!! Congenitally deafblind is much different from acquired. Concepts you

may think are there need

experiential, concrete discovery. As well, information transfer from one

situation to another does not

always occur in children with congenial deafblindness. If you can review her

file, give us exact

vision/hearing test assessment information, and where coloboma's are located

within eye; that will help.

Also, early gross motor dev'p issues, especially balance or any reports you can

find on status of inner

ear/vestibular anatomy will help us determine if eye reflexes and problems in

space perception and mov't will

be issues. Consistency of approaches is always a big problem, but wise not to

totally discard everything

that she may be familiar in terms of approaches. Your State deafblind project

could be consulted to perform

a functional Vision/learning media assessment before the decision to go to

braille is made. Realizing

individuals with CHARGE have many problems with ocular motor, (tracking,

scanning, near point convergence,

etc) have visual efficiency skills ever been a part of the program? Perceptual

vision factors often appear

in CHARGE such as depth perception; figure-ground problems, visual closure;

visual spatial relationships; and

contrast sensitivity. Ensure they include these as part of the assessment. If

there is some literacy, using

simple adapted on Mcall Spelling Test or Sloss Words for reading, Grey

test in Comprehension could

help ID some sort of level for us to be able to suggest materials/approaches.

Could use all the picture/word

materials, ( hopefully passed on from the earlier teacher,) and assess just how

many are understood both in

visual discrimination and meaning. This could be done early in year before

decisions are made on

approaches. Most common mistakes are: using too detailed pictures, incorrect

sizes both of print/pictures;

not using material in real-life activities to join meaning and representation

concepts; not starting at a

stage concrete enough...(ie. real objects come first); not joining the real

objects to more abstract material

such as the pictures and words presented together in 'Enactive' language

approach, or concrete activity

using pictures/words to prepare and follow activity up. I would use an

'emotion' calendar right from

start, for prepatory feelings and for emotional discovery through the day.

Lots of mirror work, drawing

our own faces together, then progress to picture faces, like from Boardmaker

computer program.

ANN GLOYN, Deafblind and Special Education Specialist, Canada

NCIcewolf@... wrote:

> Hi!

>

> She is now in 9th grade and for the first time I will

> have her in my class. I'm very excited to be working with her this year.

> But I'm curious if there are any activities that I can do to work with her in

> comprehension and social skills. Teachers before me did not work with her

> consistantly. I will hopefully have her for 4-5 years. I want to include

> Braille, but she is very emotionally, so I'm not sure if this would be good

> or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

> also I want to include signwriting with her, since it seems the other

> teachers before tried to use pictures with her words. Anyways, thank you so

> much for your response and any feedback is really helpful to me!

>

> Thank you!

> Cole

>

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Share on other sites

: It was so nice to hear the enthusiasm and belief in possibilities that

came through on your 1st.

post!! Congenitally deafblind is much different from acquired. Concepts you

may think are there need

experiential, concrete discovery. As well, information transfer from one

situation to another does not

always occur in children with congenial deafblindness. If you can review her

file, give us exact

vision/hearing test assessment information, and where coloboma's are located

within eye; that will help.

Also, early gross motor dev'p issues, especially balance or any reports you can

find on status of inner

ear/vestibular anatomy will help us determine if eye reflexes and problems in

space perception and mov't will

be issues. Consistency of approaches is always a big problem, but wise not to

totally discard everything

that she may be familiar in terms of approaches. Your State deafblind project

could be consulted to perform

a functional Vision/learning media assessment before the decision to go to

braille is made. Realizing

individuals with CHARGE have many problems with ocular motor, (tracking,

scanning, near point convergence,

etc) have visual efficiency skills ever been a part of the program? Perceptual

vision factors often appear

in CHARGE such as depth perception; figure-ground problems, visual closure;

visual spatial relationships; and

contrast sensitivity. Ensure they include these as part of the assessment. If

there is some literacy, using

simple adapted on Mcall Spelling Test or Sloss Words for reading, Grey

test in Comprehension could

help ID some sort of level for us to be able to suggest materials/approaches.

Could use all the picture/word

materials, ( hopefully passed on from the earlier teacher,) and assess just how

many are understood both in

visual discrimination and meaning. This could be done early in year before

decisions are made on

approaches. Most common mistakes are: using too detailed pictures, incorrect

sizes both of print/pictures;

not using material in real-life activities to join meaning and representation

concepts; not starting at a

stage concrete enough...(ie. real objects come first); not joining the real

objects to more abstract material

such as the pictures and words presented together in 'Enactive' language

approach, or concrete activity

using pictures/words to prepare and follow activity up. I would use an

'emotion' calendar right from

start, for prepatory feelings and for emotional discovery through the day.

Lots of mirror work, drawing

our own faces together, then progress to picture faces, like from Boardmaker

computer program.

ANN GLOYN, Deafblind and Special Education Specialist, Canada

NCIcewolf@... wrote:

> Hi!

>

> She is now in 9th grade and for the first time I will

> have her in my class. I'm very excited to be working with her this year.

> But I'm curious if there are any activities that I can do to work with her in

> comprehension and social skills. Teachers before me did not work with her

> consistantly. I will hopefully have her for 4-5 years. I want to include

> Braille, but she is very emotionally, so I'm not sure if this would be good

> or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

> also I want to include signwriting with her, since it seems the other

> teachers before tried to use pictures with her words. Anyways, thank you so

> much for your response and any feedback is really helpful to me!

>

> Thank you!

> Cole

>

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Share on other sites

Thanks for answering Ann. You are such a wealth of info.

Concept development, and the mystery of CHARGE kids and language are the 2

areas that I felt were important to take a good luck at right off the bat,

but didn't know how to address them succinctly. You did a great job. Kim

----------

>

>To: CHARGE

>Subject: Re: New to the list

>Date: Sat, Aug 17, 2002, 11:30 AM

>

> : It was so nice to hear the enthusiasm and belief in possibilities

> that came through on your 1st.

> post!! Congenitally deafblind is much different from acquired. Concepts

> you may think are there need

> experiential, concrete discovery. As well, information transfer from one

> situation to another does not

> always occur in children with congenial deafblindness. If you can review

> her file, give us exact

> vision/hearing test assessment information, and where coloboma's are

> located within eye; that will help.

> Also, early gross motor dev'p issues, especially balance or any reports you

> can find on status of inner

> ear/vestibular anatomy will help us determine if eye reflexes and problems

> in space perception and mov't will

> be issues. Consistency of approaches is always a big problem, but wise not

> to totally discard everything

> that she may be familiar in terms of approaches. Your State deafblind

> project could be consulted to perform

> a functional Vision/learning media assessment before the decision to go to

> braille is made. Realizing

> individuals with CHARGE have many problems with ocular motor, (tracking,

> scanning, near point convergence,

> etc) have visual efficiency skills ever been a part of the program?

> Perceptual vision factors often appear

> in CHARGE such as depth perception; figure-ground problems, visual closure;

> visual spatial relationships; and

> contrast sensitivity. Ensure they include these as part of the assessment.

> If there is some literacy, using

> simple adapted on Mcall Spelling Test or Sloss Words for reading,

> Grey test in Comprehension could

> help ID some sort of level for us to be able to suggest

> materials/approaches. Could use all the picture/word

> materials, ( hopefully passed on from the earlier teacher,) and assess just

> how many are understood both in

> visual discrimination and meaning. This could be done early in year before

> decisions are made on

> approaches. Most common mistakes are: using too detailed pictures,

> incorrect sizes both of print/pictures;

> not using material in real-life activities to join meaning and

> representation concepts; not starting at a

> stage concrete enough...(ie. real objects come first); not joining the real

> objects to more abstract material

> such as the pictures and words presented together in 'Enactive' language

> approach, or concrete activity

> using pictures/words to prepare and follow activity up. I would use an

> 'emotion' calendar right from

> start, for prepatory feelings and for emotional discovery through the

> day. Lots of mirror work, drawing

> our own faces together, then progress to picture faces, like from

> Boardmaker computer program.

> ANN GLOYN, Deafblind and Special Education Specialist, Canada

>

> NCIcewolf@... wrote:

>

>> Hi!

>>

>> She is now in 9th grade and for the first time I will

>> have her in my class. I'm very excited to be working with her this year.

>> But I'm curious if there are any activities that I can do to work with her in

>> comprehension and social skills. Teachers before me did not work with her

>> consistantly. I will hopefully have her for 4-5 years. I want to include

>> Braille, but she is very emotionally, so I'm not sure if this would be good

>> or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

>> also I want to include signwriting with her, since it seems the other

>> teachers before tried to use pictures with her words. Anyways, thank you so

>> much for your response and any feedback is really helpful to me!

>>

>> Thank you!

>> Cole

>>

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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Thanks for answering Ann. You are such a wealth of info.

Concept development, and the mystery of CHARGE kids and language are the 2

areas that I felt were important to take a good luck at right off the bat,

but didn't know how to address them succinctly. You did a great job. Kim

----------

>

>To: CHARGE

>Subject: Re: New to the list

>Date: Sat, Aug 17, 2002, 11:30 AM

>

> : It was so nice to hear the enthusiasm and belief in possibilities

> that came through on your 1st.

> post!! Congenitally deafblind is much different from acquired. Concepts

> you may think are there need

> experiential, concrete discovery. As well, information transfer from one

> situation to another does not

> always occur in children with congenial deafblindness. If you can review

> her file, give us exact

> vision/hearing test assessment information, and where coloboma's are

> located within eye; that will help.

> Also, early gross motor dev'p issues, especially balance or any reports you

> can find on status of inner

> ear/vestibular anatomy will help us determine if eye reflexes and problems

> in space perception and mov't will

> be issues. Consistency of approaches is always a big problem, but wise not

> to totally discard everything

> that she may be familiar in terms of approaches. Your State deafblind

> project could be consulted to perform

> a functional Vision/learning media assessment before the decision to go to

> braille is made. Realizing

> individuals with CHARGE have many problems with ocular motor, (tracking,

> scanning, near point convergence,

> etc) have visual efficiency skills ever been a part of the program?

> Perceptual vision factors often appear

> in CHARGE such as depth perception; figure-ground problems, visual closure;

> visual spatial relationships; and

> contrast sensitivity. Ensure they include these as part of the assessment.

> If there is some literacy, using

> simple adapted on Mcall Spelling Test or Sloss Words for reading,

> Grey test in Comprehension could

> help ID some sort of level for us to be able to suggest

> materials/approaches. Could use all the picture/word

> materials, ( hopefully passed on from the earlier teacher,) and assess just

> how many are understood both in

> visual discrimination and meaning. This could be done early in year before

> decisions are made on

> approaches. Most common mistakes are: using too detailed pictures,

> incorrect sizes both of print/pictures;

> not using material in real-life activities to join meaning and

> representation concepts; not starting at a

> stage concrete enough...(ie. real objects come first); not joining the real

> objects to more abstract material

> such as the pictures and words presented together in 'Enactive' language

> approach, or concrete activity

> using pictures/words to prepare and follow activity up. I would use an

> 'emotion' calendar right from

> start, for prepatory feelings and for emotional discovery through the

> day. Lots of mirror work, drawing

> our own faces together, then progress to picture faces, like from

> Boardmaker computer program.

> ANN GLOYN, Deafblind and Special Education Specialist, Canada

>

> NCIcewolf@... wrote:

>

>> Hi!

>>

>> She is now in 9th grade and for the first time I will

>> have her in my class. I'm very excited to be working with her this year.

>> But I'm curious if there are any activities that I can do to work with her in

>> comprehension and social skills. Teachers before me did not work with her

>> consistantly. I will hopefully have her for 4-5 years. I want to include

>> Braille, but she is very emotionally, so I'm not sure if this would be good

>> or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

>> also I want to include signwriting with her, since it seems the other

>> teachers before tried to use pictures with her words. Anyways, thank you so

>> much for your response and any feedback is really helpful to me!

>>

>> Thank you!

>> Cole

>>

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

Link to comment
Share on other sites

Thanks for answering Ann. You are such a wealth of info.

Concept development, and the mystery of CHARGE kids and language are the 2

areas that I felt were important to take a good luck at right off the bat,

but didn't know how to address them succinctly. You did a great job. Kim

----------

>

>To: CHARGE

>Subject: Re: New to the list

>Date: Sat, Aug 17, 2002, 11:30 AM

>

> : It was so nice to hear the enthusiasm and belief in possibilities

> that came through on your 1st.

> post!! Congenitally deafblind is much different from acquired. Concepts

> you may think are there need

> experiential, concrete discovery. As well, information transfer from one

> situation to another does not

> always occur in children with congenial deafblindness. If you can review

> her file, give us exact

> vision/hearing test assessment information, and where coloboma's are

> located within eye; that will help.

> Also, early gross motor dev'p issues, especially balance or any reports you

> can find on status of inner

> ear/vestibular anatomy will help us determine if eye reflexes and problems

> in space perception and mov't will

> be issues. Consistency of approaches is always a big problem, but wise not

> to totally discard everything

> that she may be familiar in terms of approaches. Your State deafblind

> project could be consulted to perform

> a functional Vision/learning media assessment before the decision to go to

> braille is made. Realizing

> individuals with CHARGE have many problems with ocular motor, (tracking,

> scanning, near point convergence,

> etc) have visual efficiency skills ever been a part of the program?

> Perceptual vision factors often appear

> in CHARGE such as depth perception; figure-ground problems, visual closure;

> visual spatial relationships; and

> contrast sensitivity. Ensure they include these as part of the assessment.

> If there is some literacy, using

> simple adapted on Mcall Spelling Test or Sloss Words for reading,

> Grey test in Comprehension could

> help ID some sort of level for us to be able to suggest

> materials/approaches. Could use all the picture/word

> materials, ( hopefully passed on from the earlier teacher,) and assess just

> how many are understood both in

> visual discrimination and meaning. This could be done early in year before

> decisions are made on

> approaches. Most common mistakes are: using too detailed pictures,

> incorrect sizes both of print/pictures;

> not using material in real-life activities to join meaning and

> representation concepts; not starting at a

> stage concrete enough...(ie. real objects come first); not joining the real

> objects to more abstract material

> such as the pictures and words presented together in 'Enactive' language

> approach, or concrete activity

> using pictures/words to prepare and follow activity up. I would use an

> 'emotion' calendar right from

> start, for prepatory feelings and for emotional discovery through the

> day. Lots of mirror work, drawing

> our own faces together, then progress to picture faces, like from

> Boardmaker computer program.

> ANN GLOYN, Deafblind and Special Education Specialist, Canada

>

> NCIcewolf@... wrote:

>

>> Hi!

>>

>> She is now in 9th grade and for the first time I will

>> have her in my class. I'm very excited to be working with her this year.

>> But I'm curious if there are any activities that I can do to work with her in

>> comprehension and social skills. Teachers before me did not work with her

>> consistantly. I will hopefully have her for 4-5 years. I want to include

>> Braille, but she is very emotionally, so I'm not sure if this would be good

>> or not. When she is happy, she is VERY happy, sad, VERY sad, visa versa, and

>> also I want to include signwriting with her, since it seems the other

>> teachers before tried to use pictures with her words. Anyways, thank you so

>> much for your response and any feedback is really helpful to me!

>>

>> Thank you!

>> Cole

>>

>

>

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

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The people at the Perkins School in Watertown, Massachusetts have a

lot of experience with CHARGE children. You might give them a call-I

think they would be very helpful.

Geo

> Hello, my name is Cole and I'm a Deaf Educator with a student

> with CHARGE syndrome. I'm really new to this, but I have some

> experience with Deaf/Blind from my husband, and I, myself am Deaf.

I

> feel that this student has many capabilities, but I'm unsure as

what

> activities I can use to build her social skills and reading

> comprehension. She is already in 9th grade, so this presents me

with

> a challenge. IF there is any website with suggested lesson or

> activites that you might recommend to me, please do. She is a very

> smart young girl and I would like high expectations for her, even

> though it seems that many teachers aren't willing to give that to

> her. Any comments would be deeply appreciated:)

>

> Smiles

> Cole

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Share on other sites

The people at the Perkins School in Watertown, Massachusetts have a

lot of experience with CHARGE children. You might give them a call-I

think they would be very helpful.

Geo

> Hello, my name is Cole and I'm a Deaf Educator with a student

> with CHARGE syndrome. I'm really new to this, but I have some

> experience with Deaf/Blind from my husband, and I, myself am Deaf.

I

> feel that this student has many capabilities, but I'm unsure as

what

> activities I can use to build her social skills and reading

> comprehension. She is already in 9th grade, so this presents me

with

> a challenge. IF there is any website with suggested lesson or

> activites that you might recommend to me, please do. She is a very

> smart young girl and I would like high expectations for her, even

> though it seems that many teachers aren't willing to give that to

> her. Any comments would be deeply appreciated:)

>

> Smiles

> Cole

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