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Michele,

I am so glad the visit went so well. I am sure the evaluation will provide

countless ideas and strategies to help Aubrie at school.

With their evaluation and a receptive team at home, a lot of good can

happen!

Kim

>

> Ok-- I'm going to try to tell you about our visit. I have some kind of

> head cold with dizziness that is interfering with my typing. We had

> such a great time that I hate to tell you about it when I'm not feeling

> that enthusiasm -- but I can't stand waiting to feel better!

>

> We arrived on Monday afternoon, met Underwood (the eval team

> spvr), and went to our house. The guest houses were not available so we

> stayed in a beautiful home that will soon be home to the president of

> the school. It was in a bit of disarray as they prepare to remodel or

> whatever, but it was comfortable and relaxing to have it all to ourselves.

>

> Monday night we went for dinner with Bonnie and Patty. Oh, my -- I

> can't even describe it! Patty is as wonderful as I remember her- and

> Bonnie -- well-- she's definitely a kindred spirit. Patty and Aubrie

> sat together in the backseat and in the booth at the restaurant. They

> could be twins 13 years removed. For me, I wanted to cry with joy at

> seeing my daughter fast-forward 13 years. After all that time in

> infancy of worry and concern at not having a vision of her future, there

> it was -- right before my eyes. And it's definitely a future I can look

> forward to and rejoice in. For Bonnie, she wanted to cry at feeling

> brought back in time to Patty's childhood. It was a wonderful

> experience for us all, I think.

>

> One funny thing -- during dinner Patty was telling us something. Then

> Aubrie asks me, " Mom, why does she have that voice? " . Apparently,

> Aubrie doesn't have a clue that her voice is different as well. I

> explained that Patty's voice was hers all grown up!

>

> Aubrie had noticed all the white canes at Perkins right away. Then

> Patty used hers to walk from the car into the restaurant and Aubrie was

> able to see first hand how it can help a person to manage without having

> to hold mommy's hand -- fine for a 6-yr-old but not so great at 20.

>

> My only regret is that I didn't get a picture of the girls together that

> night. Sorry Patty, I'm old enough that you'll always be " the girls " to

> me even when you're Kay's age!! (Smile, Kay!)

>

> Tuesday was nonstop evals for Aubrie. As usual, she came through with

> flying colors living up to my expectations. She kept at it all day

> without complaint -- enjoying the attention and giving it her best

> effort. Every professional was wonderful. I was talking with Martha

> (the DB program spvr) later about how great everyone is. Apparently

> they screen well in the hiring process to get folks who are there for

> the children -- and it shows when you are there. Everyone was pleasant

> and cheerful and exceptionally caring to the children. Each child is

> truly valued for who they are.

>

> I wish every parent of the resident children could be a fly on the wall

> and see what I saw. The kids arrived for breakfast dressed as cute as

> their moms would have dressed them. The staff would gush over them,

> " Oh, aren't you so pretty today!! " and " Oh, you're in such a good mood

> today! " , etc. If a child didn't like what was served for a meal, there

> was always a supply of favorites on hand to substitute. Each child has

> their own space -- chair, utensils, whatever they need. And when a

> newcomer walks into a room, the first question is what you need to join

> in -- special chair, whatever. We didn't see the sleeping areas, but we

> had meals in the dining area and visited in the family room one evening

> as well. I was impressed with the cleanliness too. I mean, it's

> institutional (things labeled etc) but it still has a family feel to it

> -- as much as you can within the confines of a residential institution.

>

> Oh, and the " cottages " -- nothing cottage-like at all! The campus is

> like an ivy-league college! Beautiful stone buildings, rich woodwork,

> gorgeous landscaping, etc. Of course, Aubrie has amazing karma so we

> were there during wonderful fall weather. Warm enough to enjoy the

> sunshine but cool enough to not overheat as we would have in the

> summer. We were able to walk everywhere easily. And what other kid

> just happens to be there for the annual " Fun Day " ??

>

> On Wed, we had more evals til noon and then joined in the festivities

> for the afternoon. It was a huge carnival with food, music, pony rides,

> petting zoo, etc. Aubrie had spent an hour on Tues afternoon in the

> elementary DB classroom so we hung out with those kids for the fest.

> Aubrie felt right at home with her new friends. " A CHARGE classroom,

> Mom!! " The teacher was delightful -- of course! As soon as that was

> over, it was time to head to the train. We were lucky to have a ride

> with Bonnie again for a bit for time together. Unfortunately, there

> wasn't time for Bonnie to leave work, go back home for Patty, and still

> get to us again so we missed out on Patty that day.

>

> Ok, so it was great fun. But what about the evals? We talked with each

> specialist as we went along. Plus we had ongoing conversations with Pam

> and Martha to try to combine all the info together. I didn't take notes

> so now I need to try to recall everything to discuss with Aubrie's

> school team until we get the report in a few months. The Perkins team

> met on Friday but I haven't had a chance to call to get the update on

> that yet. After Boston, we went directly to CT for a wedding. That was

> a whirlwind of nonstop fun and catching up with DJ's extended family so

> Perkins seems like it happened a year ago!

>

> Let's see if I can think out loud and recall the major highlights of the

> evals--

> PT-- 1) They couldn't do too much due to the recent hip surgery. But

> they suggested kinsethetic taping for Aubrie's shoulders. I need to

> look it up on the 'net and find a practitioner near us. It's a new

> therapy from Japan that uses tape placed strategically on the muscles to

> stimulate the contraction you need for improvement. The tape is left

> on a week at a time for several weeks. It could help strengthen

> Aubrie's shoulders. And I think I could use it for improved posture!

> 2) They use lycra skirts for hip stability. The skirt is worn for an

> hour or so a day. It's like a tube skirt that gives proprioceptive

> feedback to the whole hip joint as well as providing and promoting

> stability and proper alignment. It's something I can make at home with

> the right instructions.

> OT -- 1) They did an eval and found that Aubrie is lacking some of the

> basic pre-writing skills. So we need to back up and work on those basic

> strokes (diagonal line, box, etc) before continuing with letter

> writing. They agreed with continuing with HWOT but I think we need to

> use the full curriculum rather than just haphazardly using the materials.

> Speech -- Did 2 sessions of full eval which we don't have results of yet.

> O & M -- was able to do limited work given that Aubrie can't get around

> independently yet.

> Pam's Psych -- results of 2 sessions of testing to come later...

> Tech -- suggested use of Intellikeys rather than the traditional

> keyboard we were going to use plus Clicker4 for wordprocessing.

> Suggested traditional keyboarding instruction later.

> Audio -- agreed that bone conduction may be a good option and we should

> explore that.

> Sign language -- we all agreed that it would be a good thing, but not so

> critical as to upset the world by demanding it in the IEP. A thought

> was to develop a sign language club with Aubrie, friends, and others

> from the community. We have a deaf high schooler who could be a

> facilitator.

> General -- a general thought that will help us was to really break down

> the purpose of each activity. For example, we have spelling,

> handwriting, and computers all interrealated. For spelling, the goal is

> to spell the words which can probably be best met with oral testing.

> For handwriting, take it back to the basics and start over. For

> computers, we have two goals -- school work and creative

> writing/literacy exploration. For school work, intellikeys can help to

> get the worksheets etc done by computer. For creative writing, Clicker4

> helps to write easily and keep the creative thoughts flowing. We

> thought we were breaking down the purposes, but I think we have to get

> even more elemental than we were doing.

>

> Enough already! I'm sure there's more to say. You know me... I really

> could go on forever. Later...

>

> Michele W

> Aubrie's mom 6 yrs

>

>

>

>

>

>

>

>

> 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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Michele,

Oh my. I don't know how to say what my heart wants to. I think you know

without my words.

I do have a video of when Patty was about 4 or 5. It would give you chills

if you saw it.

What amazes me the most is that although Patty and Aubrie are from different

families, different experiences, different lives, our two girls are more

similar than Patty is to her own sister. And by that I don't mean just

physically

either. They have the same mannerisms, same likes/dislikes, same sense of

humor, same intuition of people, and same joy.

And- I did see myself in you. I saw my emotions and feelings when Patty was

such a young girl. Don't worry. Aubrie is as determined as Patty. She'll

make it.

The two of you are amazing and special people. It was an honor. I just wish

we had more time and that Patty could have somehow made it to you. BUT !!!

We will be out to Illinois soon I hope!

Thanks for the fun.

Bonnie

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Wow, Sounds like a wonderful trip all around. I know how Bonnie feels " looking

back " I felt that way at the last conference.

Glad things are going so well for Aubrie.

Lynn

perkins visit -- long

Ok-- I'm going to try to tell you about our visit. I have some kind of

head cold with dizziness that is interfering with my typing. We had

such a great time that I hate to tell you about it when I'm not feeling

that enthusiasm -- but I can't stand waiting to feel better!

We arrived on Monday afternoon, met Underwood (the eval team

spvr), and went to our house. The guest houses were not available so we

stayed in a beautiful home that will soon be home to the president of

the school. It was in a bit of disarray as they prepare to remodel or

whatever, but it was comfortable and relaxing to have it all to ourselves.

Monday night we went for dinner with Bonnie and Patty. Oh, my -- I

can't even describe it! Patty is as wonderful as I remember her- and

Bonnie -- well-- she's definitely a kindred spirit. Patty and Aubrie

sat together in the backseat and in the booth at the restaurant. They

could be twins 13 years removed. For me, I wanted to cry with joy at

seeing my daughter fast-forward 13 years. After all that time in

infancy of worry and concern at not having a vision of her future, there

it was -- right before my eyes. And it's definitely a future I can look

forward to and rejoice in. For Bonnie, she wanted to cry at feeling

brought back in time to Patty's childhood. It was a wonderful

experience for us all, I think.

One funny thing -- during dinner Patty was telling us something. Then

Aubrie asks me, " Mom, why does she have that voice? " . Apparently,

Aubrie doesn't have a clue that her voice is different as well. I

explained that Patty's voice was hers all grown up!

Aubrie had noticed all the white canes at Perkins right away. Then

Patty used hers to walk from the car into the restaurant and Aubrie was

able to see first hand how it can help a person to manage without having

to hold mommy's hand -- fine for a 6-yr-old but not so great at 20.

My only regret is that I didn't get a picture of the girls together that

night. Sorry Patty, I'm old enough that you'll always be " the girls " to

me even when you're Kay's age!! (Smile, Kay!)

Tuesday was nonstop evals for Aubrie. As usual, she came through with

flying colors living up to my expectations. She kept at it all day

without complaint -- enjoying the attention and giving it her best

effort. Every professional was wonderful. I was talking with Martha

(the DB program spvr) later about how great everyone is. Apparently

they screen well in the hiring process to get folks who are there for

the children -- and it shows when you are there. Everyone was pleasant

and cheerful and exceptionally caring to the children. Each child is

truly valued for who they are.

I wish every parent of the resident children could be a fly on the wall

and see what I saw. The kids arrived for breakfast dressed as cute as

their moms would have dressed them. The staff would gush over them,

" Oh, aren't you so pretty today!! " and " Oh, you're in such a good mood

today! " , etc. If a child didn't like what was served for a meal, there

was always a supply of favorites on hand to substitute. Each child has

their own space -- chair, utensils, whatever they need. And when a

newcomer walks into a room, the first question is what you need to join

in -- special chair, whatever. We didn't see the sleeping areas, but we

had meals in the dining area and visited in the family room one evening

as well. I was impressed with the cleanliness too. I mean, it's

institutional (things labeled etc) but it still has a family feel to it

-- as much as you can within the confines of a residential institution.

Oh, and the " cottages " -- nothing cottage-like at all! The campus is

like an ivy-league college! Beautiful stone buildings, rich woodwork,

gorgeous landscaping, etc. Of course, Aubrie has amazing karma so we

were there during wonderful fall weather. Warm enough to enjoy the

sunshine but cool enough to not overheat as we would have in the

summer. We were able to walk everywhere easily. And what other kid

just happens to be there for the annual " Fun Day " ??

On Wed, we had more evals til noon and then joined in the festivities

for the afternoon. It was a huge carnival with food, music, pony rides,

petting zoo, etc. Aubrie had spent an hour on Tues afternoon in the

elementary DB classroom so we hung out with those kids for the fest.

Aubrie felt right at home with her new friends. " A CHARGE classroom,

Mom!! " The teacher was delightful -- of course! As soon as that was

over, it was time to head to the train. We were lucky to have a ride

with Bonnie again for a bit for time together. Unfortunately, there

wasn't time for Bonnie to leave work, go back home for Patty, and still

get to us again so we missed out on Patty that day.

Ok, so it was great fun. But what about the evals? We talked with each

specialist as we went along. Plus we had ongoing conversations with Pam

and Martha to try to combine all the info together. I didn't take notes

so now I need to try to recall everything to discuss with Aubrie's

school team until we get the report in a few months. The Perkins team

met on Friday but I haven't had a chance to call to get the update on

that yet. After Boston, we went directly to CT for a wedding. That was

a whirlwind of nonstop fun and catching up with DJ's extended family so

Perkins seems like it happened a year ago!

Let's see if I can think out loud and recall the major highlights of the

evals--

PT-- 1) They couldn't do too much due to the recent hip surgery. But

they suggested kinsethetic taping for Aubrie's shoulders. I need to

look it up on the 'net and find a practitioner near us. It's a new

therapy from Japan that uses tape placed strategically on the muscles to

stimulate the contraction you need for improvement. The tape is left

on a week at a time for several weeks. It could help strengthen

Aubrie's shoulders. And I think I could use it for improved posture!

2) They use lycra skirts for hip stability. The skirt is worn for an

hour or so a day. It's like a tube skirt that gives proprioceptive

feedback to the whole hip joint as well as providing and promoting

stability and proper alignment. It's something I can make at home with

the right instructions.

OT -- 1) They did an eval and found that Aubrie is lacking some of the

basic pre-writing skills. So we need to back up and work on those basic

strokes (diagonal line, box, etc) before continuing with letter

writing. They agreed with continuing with HWOT but I think we need to

use the full curriculum rather than just haphazardly using the materials.

Speech -- Did 2 sessions of full eval which we don't have results of yet.

O & M -- was able to do limited work given that Aubrie can't get around

independently yet.

Pam's Psych -- results of 2 sessions of testing to come later...

Tech -- suggested use of Intellikeys rather than the traditional

keyboard we were going to use plus Clicker4 for wordprocessing.

Suggested traditional keyboarding instruction later.

Audio -- agreed that bone conduction may be a good option and we should

explore that.

Sign language -- we all agreed that it would be a good thing, but not so

critical as to upset the world by demanding it in the IEP. A thought

was to develop a sign language club with Aubrie, friends, and others

from the community. We have a deaf high schooler who could be a

facilitator.

General -- a general thought that will help us was to really break down

the purpose of each activity. For example, we have spelling,

handwriting, and computers all interrealated. For spelling, the goal is

to spell the words which can probably be best met with oral testing.

For handwriting, take it back to the basics and start over. For

computers, we have two goals -- school work and creative

writing/literacy exploration. For school work, intellikeys can help to

get the worksheets etc done by computer. For creative writing, Clicker4

helps to write easily and keep the creative thoughts flowing. We

thought we were breaking down the purposes, but I think we have to get

even more elemental than we were doing.

Enough already! I'm sure there's more to say. You know me... I really

could go on forever. Later...

Michele W

Aubrie's mom 6 yrs

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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Bonnie-

I would love to see that video. Bring it with you when you come this

way. Do you have photos that you could photocopy or scan? I'd love to

see Patty as a child. It is so interesting that they have so many

similarities, as you said, coming from different families, etc. Already

I'd noticed that Aubrie and her CHARGE peers are really like CHARGE

" siblings " -- but with Patty it is almost freaky. I'm sure it's so much

more intense for you because you knew Patty as a child and I'm just

comparing them now.

Michele

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Michele,

I enjoyed reading all about Aubrie's Perkins adventure, thanks for sharing. It

sounds very similar to the evaluations they do at the APSEA school up here. We

had CHARGE week with three of them the same age heading to school for

evaluation, it was so great, we all lived together in the same apartment for a

week.

I'm glad it was a positive experience, I'm jealous you got to see Patty & Bonnie

again - I'm not sure if we'll make the conference next year and I can't even

dwell on it because it's just too upsetting thinking I " m not going to get to see

you guys all next year....!

take care and give Aubrie a hug!

,

Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme

New Brunswick, CANADA

Visit the Weir family at: http://ca.geocities.com/weirfamilyrogers

lisaweir@...

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-

Your week of evals together sounds really fun! I hope you make it next

summer -- but I wonder too if I'll get funding together in time. It's

coming so fast and I haven't started -- nor do I have the energy to

think about it right now. I am hoping for the best and hoping you find

a way too.

Michele

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Michele,

After reading that, the only thing I can say is what an experience!

Sheryl

Mom to Mitch 18 & 18

> Ok-- I'm going to try to tell you about our visit. I have some

kind of

> head cold with dizziness that is interfering with my typing. We

had

> such a great time that I hate to tell you about it when I'm not

feeling

> that enthusiasm -- but I can't stand waiting to feel better!

>

> We arrived on Monday afternoon, met Underwood (the eval team

> spvr), and went to our house. The guest houses were not available

so we

> stayed in a beautiful home that will soon be home to the president

of

> the school. It was in a bit of disarray as they prepare to remodel

or

> whatever, but it was comfortable and relaxing to have it all to

ourselves.

>

> Monday night we went for dinner with Bonnie and Patty. Oh, my -- I

> can't even describe it! Patty is as wonderful as I remember her-

and

> Bonnie -- well-- she's definitely a kindred spirit. Patty and

Aubrie

> sat together in the backseat and in the booth at the restaurant.

They

> could be twins 13 years removed. For me, I wanted to cry with joy

at

> seeing my daughter fast-forward 13 years. After all that time in

> infancy of worry and concern at not having a vision of her future,

there

> it was -- right before my eyes. And it's definitely a future I can

look

> forward to and rejoice in. For Bonnie, she wanted to cry at

feeling

> brought back in time to Patty's childhood. It was a wonderful

> experience for us all, I think.

>

> One funny thing -- during dinner Patty was telling us something.

Then

> Aubrie asks me, " Mom, why does she have that voice? " . Apparently,

> Aubrie doesn't have a clue that her voice is different as well. I

> explained that Patty's voice was hers all grown up!

>

> Aubrie had noticed all the white canes at Perkins right away. Then

> Patty used hers to walk from the car into the restaurant and Aubrie

was

> able to see first hand how it can help a person to manage without

having

> to hold mommy's hand -- fine for a 6-yr-old but not so great at 20.

>

> My only regret is that I didn't get a picture of the girls together

that

> night. Sorry Patty, I'm old enough that you'll always be " the

girls " to

> me even when you're Kay's age!! (Smile, Kay!)

>

> Tuesday was nonstop evals for Aubrie. As usual, she came through

with

> flying colors living up to my expectations. She kept at it all day

> without complaint -- enjoying the attention and giving it her best

> effort. Every professional was wonderful. I was talking with

Martha

> (the DB program spvr) later about how great everyone is.

Apparently

> they screen well in the hiring process to get folks who are there

for

> the children -- and it shows when you are there. Everyone was

pleasant

> and cheerful and exceptionally caring to the children. Each child

is

> truly valued for who they are.

>

> I wish every parent of the resident children could be a fly on the

wall

> and see what I saw. The kids arrived for breakfast dressed as cute

as

> their moms would have dressed them. The staff would gush over

them,

> " Oh, aren't you so pretty today!! " and " Oh, you're in such a good

mood

> today! " , etc. If a child didn't like what was served for a meal,

there

> was always a supply of favorites on hand to substitute. Each child

has

> their own space -- chair, utensils, whatever they need. And when a

> newcomer walks into a room, the first question is what you need to

join

> in -- special chair, whatever. We didn't see the sleeping areas,

but we

> had meals in the dining area and visited in the family room one

evening

> as well. I was impressed with the cleanliness too. I mean, it's

> institutional (things labeled etc) but it still has a family feel

to it

> -- as much as you can within the confines of a residential

institution.

>

> Oh, and the " cottages " -- nothing cottage-like at all! The campus

is

> like an ivy-league college! Beautiful stone buildings, rich

woodwork,

> gorgeous landscaping, etc. Of course, Aubrie has amazing karma so

we

> were there during wonderful fall weather. Warm enough to enjoy the

> sunshine but cool enough to not overheat as we would have in the

> summer. We were able to walk everywhere easily. And what other

kid

> just happens to be there for the annual " Fun Day " ??

>

> On Wed, we had more evals til noon and then joined in the

festivities

> for the afternoon. It was a huge carnival with food, music, pony

rides,

> petting zoo, etc. Aubrie had spent an hour on Tues afternoon in

the

> elementary DB classroom so we hung out with those kids for the

fest.

> Aubrie felt right at home with her new friends. " A CHARGE

classroom,

> Mom!! " The teacher was delightful -- of course! As soon as that

was

> over, it was time to head to the train. We were lucky to have a

ride

> with Bonnie again for a bit for time together. Unfortunately,

there

> wasn't time for Bonnie to leave work, go back home for Patty, and

still

> get to us again so we missed out on Patty that day.

>

> Ok, so it was great fun. But what about the evals? We talked with

each

> specialist as we went along. Plus we had ongoing conversations

with Pam

> and Martha to try to combine all the info together. I didn't take

notes

> so now I need to try to recall everything to discuss with Aubrie's

> school team until we get the report in a few months. The Perkins

team

> met on Friday but I haven't had a chance to call to get the update

on

> that yet. After Boston, we went directly to CT for a wedding.

That was

> a whirlwind of nonstop fun and catching up with DJ's extended

family so

> Perkins seems like it happened a year ago!

>

> Let's see if I can think out loud and recall the major highlights

of the

> evals--

> PT-- 1) They couldn't do too much due to the recent hip surgery.

But

> they suggested kinsethetic taping for Aubrie's shoulders. I need

to

> look it up on the 'net and find a practitioner near us. It's a new

> therapy from Japan that uses tape placed strategically on the

muscles to

> stimulate the contraction you need for improvement. The tape is

left

> on a week at a time for several weeks. It could help strengthen

> Aubrie's shoulders. And I think I could use it for improved

posture!

> 2) They use lycra skirts for hip stability. The skirt is worn for

an

> hour or so a day. It's like a tube skirt that gives proprioceptive

> feedback to the whole hip joint as well as providing and promoting

> stability and proper alignment. It's something I can make at home

with

> the right instructions.

> OT -- 1) They did an eval and found that Aubrie is lacking some of

the

> basic pre-writing skills. So we need to back up and work on those

basic

> strokes (diagonal line, box, etc) before continuing with letter

> writing. They agreed with continuing with HWOT but I think we need

to

> use the full curriculum rather than just haphazardly using the

materials.

> Speech -- Did 2 sessions of full eval which we don't have results

of yet.

> O & M -- was able to do limited work given that Aubrie can't get

around

> independently yet.

> Pam's Psych -- results of 2 sessions of testing to come later...

> Tech -- suggested use of Intellikeys rather than the traditional

> keyboard we were going to use plus Clicker4 for wordprocessing.

> Suggested traditional keyboarding instruction later.

> Audio -- agreed that bone conduction may be a good option and we

should

> explore that.

> Sign language -- we all agreed that it would be a good thing, but

not so

> critical as to upset the world by demanding it in the IEP. A

thought

> was to develop a sign language club with Aubrie, friends, and

others

> from the community. We have a deaf high schooler who could be a

> facilitator.

> General -- a general thought that will help us was to really break

down

> the purpose of each activity. For example, we have spelling,

> handwriting, and computers all interrealated. For spelling, the

goal is

> to spell the words which can probably be best met with oral

testing.

> For handwriting, take it back to the basics and start over. For

> computers, we have two goals -- school work and creative

> writing/literacy exploration. For school work, intellikeys can

help to

> get the worksheets etc done by computer. For creative writing,

Clicker4

> helps to write easily and keep the creative thoughts flowing. We

> thought we were breaking down the purposes, but I think we have to

get

> even more elemental than we were doing.

>

> Enough already! I'm sure there's more to say. You know me... I

really

> could go on forever. Later...

>

> Michele W

> Aubrie's mom 6 yrs

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> We will be out to Illinois soon I hope!

>

>

> Thanks for the fun.

>

> Bonnie

>

>

Bonnie,

When will you be coming this way? I met you at the Indy conference

and would love to meet up with you if you had some time. You and

Patty give me the inspiration that I need more often than you

probably know.

Sheryl

Mom to Mitch 18 & 18 CHARGE

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Oh I'm so excited about your trip. I wish I had been there too! Patty was an

inspiration to me at the CHARGE conference. I know you all had a great time.

I'm glad you found out what to do about the writing. I hope it helps her.

This is great.

Kay

perkins visit -- long

>

> Ok-- I'm going to try to tell you about our visit. I have some kind of

> head cold with dizziness that is interfering with my typing. We had

> such a great time that I hate to tell you about it when I'm not feeling

> that enthusiasm -- but I can't stand waiting to feel better!

>

> We arrived on Monday afternoon, met Underwood (the eval team

> spvr), and went to our house. The guest houses were not available so we

> stayed in a beautiful home that will soon be home to the president of

> the school. It was in a bit of disarray as they prepare to remodel or

> whatever, but it was comfortable and relaxing to have it all to ourselves.

>

> Monday night we went for dinner with Bonnie and Patty. Oh, my -- I

> can't even describe it! Patty is as wonderful as I remember her- and

> Bonnie -- well-- she's definitely a kindred spirit. Patty and Aubrie

> sat together in the backseat and in the booth at the restaurant. They

> could be twins 13 years removed. For me, I wanted to cry with joy at

> seeing my daughter fast-forward 13 years. After all that time in

> infancy of worry and concern at not having a vision of her future, there

> it was -- right before my eyes. And it's definitely a future I can look

> forward to and rejoice in. For Bonnie, she wanted to cry at feeling

> brought back in time to Patty's childhood. It was a wonderful

> experience for us all, I think.

>

> One funny thing -- during dinner Patty was telling us something. Then

> Aubrie asks me, " Mom, why does she have that voice? " . Apparently,

> Aubrie doesn't have a clue that her voice is different as well. I

> explained that Patty's voice was hers all grown up!

>

> Aubrie had noticed all the white canes at Perkins right away. Then

> Patty used hers to walk from the car into the restaurant and Aubrie was

> able to see first hand how it can help a person to manage without having

> to hold mommy's hand -- fine for a 6-yr-old but not so great at 20.

>

> My only regret is that I didn't get a picture of the girls together that

> night. Sorry Patty, I'm old enough that you'll always be " the girls " to

> me even when you're Kay's age!! (Smile, Kay!)

>

> Tuesday was nonstop evals for Aubrie. As usual, she came through with

> flying colors living up to my expectations. She kept at it all day

> without complaint -- enjoying the attention and giving it her best

> effort. Every professional was wonderful. I was talking with Martha

> (the DB program spvr) later about how great everyone is. Apparently

> they screen well in the hiring process to get folks who are there for

> the children -- and it shows when you are there. Everyone was pleasant

> and cheerful and exceptionally caring to the children. Each child is

> truly valued for who they are.

>

> I wish every parent of the resident children could be a fly on the wall

> and see what I saw. The kids arrived for breakfast dressed as cute as

> their moms would have dressed them. The staff would gush over them,

> " Oh, aren't you so pretty today!! " and " Oh, you're in such a good mood

> today! " , etc. If a child didn't like what was served for a meal, there

> was always a supply of favorites on hand to substitute. Each child has

> their own space -- chair, utensils, whatever they need. And when a

> newcomer walks into a room, the first question is what you need to join

> in -- special chair, whatever. We didn't see the sleeping areas, but we

> had meals in the dining area and visited in the family room one evening

> as well. I was impressed with the cleanliness too. I mean, it's

> institutional (things labeled etc) but it still has a family feel to it

> -- as much as you can within the confines of a residential institution.

>

> Oh, and the " cottages " -- nothing cottage-like at all! The campus is

> like an ivy-league college! Beautiful stone buildings, rich woodwork,

> gorgeous landscaping, etc. Of course, Aubrie has amazing karma so we

> were there during wonderful fall weather. Warm enough to enjoy the

> sunshine but cool enough to not overheat as we would have in the

> summer. We were able to walk everywhere easily. And what other kid

> just happens to be there for the annual " Fun Day " ??

>

> On Wed, we had more evals til noon and then joined in the festivities

> for the afternoon. It was a huge carnival with food, music, pony rides,

> petting zoo, etc. Aubrie had spent an hour on Tues afternoon in the

> elementary DB classroom so we hung out with those kids for the fest.

> Aubrie felt right at home with her new friends. " A CHARGE classroom,

> Mom!! " The teacher was delightful -- of course! As soon as that was

> over, it was time to head to the train. We were lucky to have a ride

> with Bonnie again for a bit for time together. Unfortunately, there

> wasn't time for Bonnie to leave work, go back home for Patty, and still

> get to us again so we missed out on Patty that day.

>

> Ok, so it was great fun. But what about the evals? We talked with each

> specialist as we went along. Plus we had ongoing conversations with Pam

> and Martha to try to combine all the info together. I didn't take notes

> so now I need to try to recall everything to discuss with Aubrie's

> school team until we get the report in a few months. The Perkins team

> met on Friday but I haven't had a chance to call to get the update on

> that yet. After Boston, we went directly to CT for a wedding. That was

> a whirlwind of nonstop fun and catching up with DJ's extended family so

> Perkins seems like it happened a year ago!

>

> Let's see if I can think out loud and recall the major highlights of the

> evals--

> PT-- 1) They couldn't do too much due to the recent hip surgery. But

> they suggested kinsethetic taping for Aubrie's shoulders. I need to

> look it up on the 'net and find a practitioner near us. It's a new

> therapy from Japan that uses tape placed strategically on the muscles to

> stimulate the contraction you need for improvement. The tape is left

> on a week at a time for several weeks. It could help strengthen

> Aubrie's shoulders. And I think I could use it for improved posture!

> 2) They use lycra skirts for hip stability. The skirt is worn for an

> hour or so a day. It's like a tube skirt that gives proprioceptive

> feedback to the whole hip joint as well as providing and promoting

> stability and proper alignment. It's something I can make at home with

> the right instructions.

> OT -- 1) They did an eval and found that Aubrie is lacking some of the

> basic pre-writing skills. So we need to back up and work on those basic

> strokes (diagonal line, box, etc) before continuing with letter

> writing. They agreed with continuing with HWOT but I think we need to

> use the full curriculum rather than just haphazardly using the materials.

> Speech -- Did 2 sessions of full eval which we don't have results of yet.

> O & M -- was able to do limited work given that Aubrie can't get around

> independently yet.

> Pam's Psych -- results of 2 sessions of testing to come later...

> Tech -- suggested use of Intellikeys rather than the traditional

> keyboard we were going to use plus Clicker4 for wordprocessing.

> Suggested traditional keyboarding instruction later.

> Audio -- agreed that bone conduction may be a good option and we should

> explore that.

> Sign language -- we all agreed that it would be a good thing, but not so

> critical as to upset the world by demanding it in the IEP. A thought

> was to develop a sign language club with Aubrie, friends, and others

> from the community. We have a deaf high schooler who could be a

> facilitator.

> General -- a general thought that will help us was to really break down

> the purpose of each activity. For example, we have spelling,

> handwriting, and computers all interrealated. For spelling, the goal is

> to spell the words which can probably be best met with oral testing.

> For handwriting, take it back to the basics and start over. For

> computers, we have two goals -- school work and creative

> writing/literacy exploration. For school work, intellikeys can help to

> get the worksheets etc done by computer. For creative writing, Clicker4

> helps to write easily and keep the creative thoughts flowing. We

> thought we were breaking down the purposes, but I think we have to get

> even more elemental than we were doing.

>

> Enough already! I'm sure there's more to say. You know me... I really

> could go on forever. Later...

>

> Michele W

> Aubrie's mom 6 yrs

>

>

>

>

>

>

>

>

> 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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Kay-

Thanks for sharing in our excitement. I will let you guys know how

things go as we put into practice some of the suggestions from Perkins.

Right now, we're getting ready for weekend guests and fall color

festival so it'll be a while before I can get on top of things again.

Michele W

Aubrie's mom

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