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Dylan was 3 yrs 8 mos when he started walking independently. (My finger is

still always available for him to grab onto when he feels he needs a little

support for different situations. - Isn't it amazing what can be

communicated though the touch of one little finger?) He did have the

transition tool of an assistive mobility device between the walker and

independent walking. It is like a blind person's cane on wheels. It's

intention was to help him feel changes in surface etc coming up, but having

it to hang onto did help his security. Then he took to walking with his

back up against my legs, so he felt support from behind, then one day he

just took off.

Kim

> ,

>

> Yes, she did seem to like the walker outside more than inside recently. Like

> you said, I think she has more opportunity in the house to take the easy way

> out! Lately, though, even outside, she's rather walk with just one of us

> holding her hand than with her walker. This is actually helping her more with

> balance than the walker, I think, because she's got a lot less support with

> just one finger from us rather than the walker--but at the same time, it

> doesn't do much to promote independence. I guess it's a trade-off, and maybe

> the independence will start to come back more once she's mastered some walking

> skills. We're up to about 8 or 9 steps now completely on her own. I was

> looking back through my journal yesterday, and she was only at 2 steps in

> April, so she's making some decent progress!

>

> , mom to (3 1/2)

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

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'

* uses a combination of true PECS and made up ones. She responds to

both photos and line drawings (and also ordinary pictures but we have not

got round to including these in the PECS yet). We had a big meeting a

couple of months ago in which it was decided that it is worth using all her

highly motivating system. Don't forget though that she is 1-1/2 years older

than so knows and has experienced more. School had made her some

communication books with photos and line drawings about 1-1/2 years ago as

her receptive language was not that great either (shame, we had the books

with us in Miami. Would have been happy to share!). She can now sign

everything in the books but her meaningful communication still lags behind.

She has a high vocab but mostly for nouns so she loves to label things.

**That's how come she can put pictures and sign together. She can sit with

a book and name everything but now we are trying to move her language on so

she can communicate with us not just to name things. She is also very much

a one word signer.

***When we ran out of furniture, we asked her to use walls, built in

cupboards etc but that was only for very short distances. How is with

Kaye walker outdoors?

look forwad to hearing more on progress.

Oh, and the CI meeting got postponed to tomorrow so there should be some

news soon.

Flo

>From: Kauffman <lakcharge@...

*Does use a true PECS system, with line drawings, or have you made

your own?

**That's neat to hear that puts the pictures and the signs together.

That's what I'd like to see eventually do.

***That's a great idea, too, about moving your furniture around so that

was able to cruise to everything. Ours is still pretty spaced out

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Using pictures as cues is common in deafblindness and there are many types

out there to choose from including real photographs. The part of PECS that

I see as unique and needed for our kids is the formal sessions where they

work on the exchange, the part that lets them know a response is required.

Hence the Picture EXCHANGE Communication System. It takes 3 people to do it

properly and it needs adapted for a deaf child. It's important that the

photo chosen has meaning for them, but it is the exchange that teaches the

social aspects of reciprocal communication.

(This is a program that is generally school based in the states.)

Kim

> '

> * uses a combination of true PECS and made up ones. She responds to

> both photos and line drawings (and also ordinary pictures but we have not

> got round to including these in the PECS yet). We had a big meeting a

> couple of months ago in which it was decided that it is worth using all her

> highly motivating system. Don't forget though that she is 1-1/2 years older

> than so knows and has experienced more. School had made her some

> communication books with photos and line drawings about 1-1/2 years ago as

> her receptive language was not that great either (shame, we had the books

> with us in Miami. Would have been happy to share!). She can now sign

> everything in the books but her meaningful communication still lags behind.

> She has a high vocab but mostly for nouns so she loves to label things.

>

> **That's how come she can put pictures and sign together. She can sit with

> a book and name everything but now we are trying to move her language on so

> she can communicate with us not just to name things. She is also very much

> a one word signer.

>

> ***When we ran out of furniture, we asked her to use walls, built in

> cupboards etc but that was only for very short distances. How is with

> Kaye walker outdoors?

>

> look forwad to hearing more on progress.

>

> Oh, and the CI meeting got postponed to tomorrow so there should be some

> news soon.

>

> Flo

>

>> From: Kauffman <lakcharge@...

>

> *Does use a true PECS system, with line drawings, or have you made

> your own?

>

> **That's neat to hear that puts the pictures and the signs together.

> That's what I'd like to see eventually do.

>

> ***That's a great idea, too, about moving your furniture around so that

> was able to cruise to everything. Ours is still pretty spaced out

>

>

>

>

>

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

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> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

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Flo,

Oh, I wish I would have seen 's communication book at the conference! I

would have liked to have had another week with all the families there, just to

visit and share experiences, etc.--there just wasn't enough time for that. So,

what's in her communication book? Is it mostly things she's familiar with, like

people in her life, things at home and school, etc.? Arlin took some pictures

around the house here last week and we're going to have the teacher laminate

those, but maybe we should start a book for her, too, with photos like that. We

tried that when she was much younger (not even a year) at the urging of her deaf

specialist, but she was just too young to be interested at that point. She

might be a lot more interested now, though. Thanks for bringing up that idea!

's not even at the labeling point with signs yet. Maybe the photos will

help with that.

can maneuver outside in her Kaye walker pretty good, but she's really into

wanting to be " unconfined " right now. She wants a finger to grab onto, or we've

even started just holding onto the collar of her shirt in the back. She will

use the wall for support inside, but we usually have to help her balance by

giving her a finger to hang onto with her outside hand. She's getting there,

but it's just slow for her. It amazes me how little balance she has sometimes.

She can be standing, leaning against something, and then just take a complete

fall to the right or backwards, just like a tree crashing down. I keep

wondering if there's anything out there, therapy or otherwise, that can help

with that. Maybe it's just a matter of time for the brain to figure out how to

adjust without the semicircular canals, though. Are 's canals missing?

Let us know how the CI meeting goes! I'll be thinking about you.

, mom to

---------------------------------

Start your day with Yahoo! - make it your home page

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These kids are so amazing. If I randomly fell over like a tree, I'm not

sure I would ever get up and walk. is doing great moving forward in

spite of it.

On the book, it took 2 1/2 years of consistent use before Dylan got the

concept that he could use his cues to communicate with us and even so it is

still very slow. It took until he was 8 before we could put all the cues in

a book and have him choose one. Before that it was too complex, so we set

up his day 2 cues at a time.

He has a book now and will follow the schedule, but he hates to set the cues

up himself.

Decide on what you want with the picture cues before setting up the book.

Is it for her to have them all together so she can choose or is it to be

used as a schedule. Either way start with just a few pictures.

Kim L

> Flo,

>

> Oh, I wish I would have seen 's communication book at the conference!

> I would have liked to have had another week with all the families there, just

> to visit and share experiences, etc.--there just wasn't enough time for that.

> So, what's in her communication book? Is it mostly things she's familiar

> with, like people in her life, things at home and school, etc.? Arlin took

> some pictures around the house here last week and we're going to have the

> teacher laminate those, but maybe we should start a book for her, too, with

> photos like that. We tried that when she was much younger (not even a year)

> at the urging of her deaf specialist, but she was just too young to be

> interested at that point. She might be a lot more interested now, though.

> Thanks for bringing up that idea! 's not even at the labeling point with

> signs yet. Maybe the photos will help with that.

>

> can maneuver outside in her Kaye walker pretty good, but she's really

> into wanting to be " unconfined " right now. She wants a finger to grab onto,

> or we've even started just holding onto the collar of her shirt in the back.

> She will use the wall for support inside, but we usually have to help her

> balance by giving her a finger to hang onto with her outside hand. She's

> getting there, but it's just slow for her. It amazes me how little balance

> she has sometimes. She can be standing, leaning against something, and then

> just take a complete fall to the right or backwards, just like a tree crashing

> down. I keep wondering if there's anything out there, therapy or otherwise,

> that can help with that. Maybe it's just a matter of time for the brain to

> figure out how to adjust without the semicircular canals, though. Are

> 's canals missing?

>

> Let us know how the CI meeting goes! I'll be thinking about you.

>

> , mom to

>

>

> ---------------------------------

> Start your day with Yahoo! - make it your home page

>

>

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Good advice on the book, Kim. I think I'd like to start her out with a few

pictures for a schedule. She's really into routines right now--everything has

to be in its right place and everything has to be in the same order for her--so

I'm thinking now might be a good time to introduce a schedule system. I think

it will take her quite a while to really get the whole concept, but it seems

like a good place to start. Her preschool is going to work with us on it this

fall.

And yes, I know what you mean about these kids being so resilient. When

falls over like that, she doesn't even cry or get irritated or anything--she

just picks herself back up as if nothing happened, and off she goes!

__________________________________________________

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