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now if the district will just cooperate you should have everything in

place--depending on next years teacher--unfortunately it's never ending.

good luck with finding the right answers.

good news

>I just met with Aubrie's teacher to discuss the things we're seeing. You

> guys, I cried while talking to her. She is a gem. *She* was the one

> telling me that it's not just her hearing, her vision, her sinuses, etc.

> It's not that she doesn't want to do something. it's that her brain just

> can't. She can't. But we don't understand why. This woman totally gets

> it. I'm amazed and so thankful. She is frustrated because she sees

> what's

> happening and is powerless and feeling inadequate because she doesn't

> understand the whys and doesn't know what to do. *She* told me that this

> felt like a turning point where things could go well if we do it right or

> fall apart for Aubrie if we don't. That's just how I feel. This is a

> critical time and this woman totally gets it.

>

>

>

> Now my challenge will be to get the school administrators to get it and

> move

> quickly with some solutions. Where will we get the solutions? I have no

> idea.

>

>

>

> I talked to Dr Davenport and she suggested a neuropsych (just as my local

> neuropsych suggested). So I have begun the search. I have a name to

> start

> with and we'll see where that leads.

>

>

>

> Back to the teacher - she also gets that it's ok for Aubrie to rock when

> she

> needs to regroup. But she's frustrated that we can't teach her a better

> way

> - -or that she gets to that level to start with. She lets Aubrie get up

> and

> walk if she needs to. I mean, there's none of the " we do things this way

> in

> my classroom " mentality. It's all about what does Aubrie need and if it's

> not bothering anyone else, what's the difference.

>

>

>

> And she's seeing the inconsistencies in Aubrie's attention, ability to

> focus, and performance. One moment, she can be right on. The next, she

> can

> be completely out there. No rhyme or reason. But the teacher also

> believes

> in Aubrie's potential and doesn't want to underestimate her or expect too

> little.

>

>

>

> So I'm feeling great about the people she has working with her. But how

> to

> provide them with the understanding and support they need to support

> Aubrie?

>

>

>

> Michele W

> Aubrie's mom 8 yrs

>

>

>

>

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-

That's just it -- if the district cooperates and depending on next year's

teacher. But what a huge step to have the teacher sharing my concerns. If

I don't get any action, I'm sure she'll request the help too. We're on the

same page and have the same concerns. I can't imagine her letting things

continue as is for the rest of the year. Even if it was just left to her

and me to figure it out, we will. Of course, I don't want to do that, but I

feel fairly confident that something will work out one way or another.

Michele W

Re: good news

now if the district will just cooperate you should have everything in

place--depending on next years teacher--unfortunately it's never ending.

good luck with finding the right answers.

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hope so--hugs

Re: good news

>

> now if the district will just cooperate you should have everything in

> place--depending on next years teacher--unfortunately it's never ending.

> good luck with finding the right answers.

>

>

>

>

>

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

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

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Michele,

This is really important and such good news. A year (2nd year even) with a

good teacher can not only be great for now, but if she helps figure things

out now and gets it into the IEP then it helps years down the road and it

helps if the teacher is looking for the solutions instead of just you. That

way the recommendations are coming from inside the school, not from " just

mom " as some special ed directors are inclined to think.

Go for it!

Kim

> -

> That's just it -- if the district cooperates and depending on next year's

> teacher. But what a huge step to have the teacher sharing my concerns. If

> I don't get any action, I'm sure she'll request the help too. We're on the

> same page and have the same concerns. I can't imagine her letting things

> continue as is for the rest of the year. Even if it was just left to her

> and me to figure it out, we will. Of course, I don't want to do that, but I

> feel fairly confident that something will work out one way or another.

>

> Michele W

>

> Re: good news

>

> now if the district will just cooperate you should have everything in

> place--depending on next years teacher--unfortunately it's never ending.

> good luck with finding the right answers.

>

>

>

>

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

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cool

>

> Michele,

>

> This is really important and such good news. A year (2nd year even) with

> a

> good teacher can not only be great for now, but if she helps figure things

> out now and gets it into the IEP then it helps years down the road and it

> helps if the teacher is looking for the solutions instead of just

> you. That

> way the recommendations are coming from inside the school, not from " just

> mom " as some special ed directors are inclined to think.

>

> Go for it!

>

> Kim

>

>

>

>

> > -

> > That's just it -- if the district cooperates and depending on next

> year's

> > teacher. But what a huge step to have the teacher sharing my

> concerns. If

> > I don't get any action, I'm sure she'll request the help too. We're on

> the

> > same page and have the same concerns. I can't imagine her letting

> things

> > continue as is for the rest of the year. Even if it was just left to

> her

> > and me to figure it out, we will. Of course, I don't want to do that,

> but I

> > feel fairly confident that something will work out one way or another.

> >

> > Michele W

> >

> > Re: good news

> >

> > now if the district will just cooperate you should have everything in

> > place--depending on next years teacher--unfortunately it's never ending.

> > good luck with finding the right answers.

> >

> >

> >

> >

> >

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

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > 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@... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

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

> >

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  • 4 weeks later...

That is great news! Congratulations. Sounds like this training was

meant to be, the way it has worked out so well. Hope it all goes

without a hitch and that Patty really enjoys it!

Sharon from West Oz

>With all the things going on we do have some good news to share. Patty was

>recently evaluated at Easter Seals in Boston for vocational training. They

>found the same as all her evals showed since she was young, that she should do

>something with computers for a career.

>

>So now Patty will be going in and receiving training at their office in

>Boston specifically for this. Yea.

>

>Even better is this is kind of working with our schedule. I drop Patty off

>at the computer rail near where I work early in the morning. She

>travels alone

>right in to the city. The office is right near the station where she gets

>off the train. When done she hops back on the commuter rail to the

>town where I

>work and goes to the coffee shop nearby to wait for me to pick her up. If

>she's bored there are tons of stores to go window shopping in while

>she waits.

>Talk about being independent! It is harder than it sounds. We did practice

>this with her before she started because finding the train back is the most

>confusing part. It took me weeks to figure it out when we first

>moved here and

>she did it in two days.

>

>Better is that Patty is really pleased with herself. She's coming back to

>being my chatty Patty again. And by the way this has all been occurring while

>she's been going thorough her surgery and illnesses.

>

>We'll see where this will lead Patty. It's all good.

>

>The only bad thing in this is that we have had tons of snow today. She goes

>in bright and early in the morning. Guess she'll have to bundle up.

>

>Wahoo

>

>

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

>

>

>

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i second taht lol xxxxxx

>

> That is great news! Congratulations. Sounds like this training was

> meant to be, the way it has worked out so well. Hope it all goes

> without a hitch and that Patty really enjoys it!

> Sharon from West Oz

>

> >With all the things going on we do have some good news to share. Patty

> was

> >recently evaluated at Easter Seals in Boston for vocational

> training. They

> >found the same as all her evals showed since she was young, that she

> should do

> >something with computers for a career.

> >

> >So now Patty will be going in and receiving training at their office in

> >Boston specifically for this. Yea.

> >

> >Even better is this is kind of working with our schedule. I drop Patty

> off

> >at the computer rail near where I work early in the morning. She

> >travels alone

> >right in to the city. The office is right near the station where she

> gets

> >off the train. When done she hops back on the commuter rail to the

> >town where I

> >work and goes to the coffee shop nearby to wait for me to pick her

> up. If

> >she's bored there are tons of stores to go window shopping in while

> >she waits.

> >Talk about being independent! It is harder than it sounds. We did

> practice

> >this with her before she started because finding the train back is the

> most

> >confusing part. It took me weeks to figure it out when we first

> >moved here and

> >she did it in two days.

> >

> >Better is that Patty is really pleased with herself. She's coming back

> to

> >being my chatty Patty again. And by the way this has all been occurring

> while

> >she's been going thorough her surgery and illnesses.

> >

> >We'll see where this will lead Patty. It's all good.

> >

> >The only bad thing in this is that we have had tons of snow today. She

> goes

> >in bright and early in the morning. Guess she'll have to bundle up.

> >

> >Wahoo

> >

> >

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

> >

> >

> >

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This sounds so wonderful! I hope it really meets your expectations. No

more of the " it didn't turn out as we hoped " posts, right? I can just

imagine Patty getting to know the folks at the coffee shop and local shops,

building new relationships as she blossoms in her new routine. Can't wait

to hear more after a few weeks. We've been watching your weather on the

news. We got snow here but less than an inch. Just when we thought we had

escaped " real " winter -- here it is to show us whose boss!

Michele W

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-Great news Bonnie and Patty!! Wonderful, Wonderful, Wonderful

, mom to Makenna 5 years old

-- In CHARGE , Turk22082@... wrote:

>

> With all the things going on we do have some good news to share.

Patty was

> recently evaluated at Easter Seals in Boston for vocational

training. They

> found the same as all her evals showed since she was young, that

she should do

> something with computers for a career.

>

> So now Patty will be going in and receiving training at their

office in

> Boston specifically for this. Yea.

>

> Even better is this is kind of working with our schedule. I drop

Patty off

> at the computer rail near where I work early in the morning. She

travels alone

> right in to the city. The office is right near the station where

she gets

> off the train. When done she hops back on the commuter rail to

the town where I

> work and goes to the coffee shop nearby to wait for me to pick her

up. If

> she's bored there are tons of stores to go window shopping in

while she waits.

> Talk about being independent! It is harder than it sounds. We

did practice

> this with her before she started because finding the train back is

the most

> confusing part. It took me weeks to figure it out when we first

moved here and

> she did it in two days.

>

> Better is that Patty is really pleased with herself. She's coming

back to

> being my chatty Patty again. And by the way this has all been

occurring while

> she's been going thorough her surgery and illnesses.

>

> We'll see where this will lead Patty. It's all good.

>

> The only bad thing in this is that we have had tons of snow

today. She goes

> in bright and early in the morning. Guess she'll have to bundle

up.

>

> Wahoo

>

>

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

>

>

>

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glad things are on track!!

Good news

> With all the things going on we do have some good news to share. Patty

> was

> recently evaluated at Easter Seals in Boston for vocational training.

> They

> found the same as all her evals showed since she was young, that she

> should do

> something with computers for a career.

>

> So now Patty will be going in and receiving training at their office in

> Boston specifically for this. Yea.

>

> Even better is this is kind of working with our schedule. I drop Patty

> off

> at the computer rail near where I work early in the morning. She travels

> alone

> right in to the city. The office is right near the station where she gets

> off the train. When done she hops back on the commuter rail to the town

> where I

> work and goes to the coffee shop nearby to wait for me to pick her up. If

> she's bored there are tons of stores to go window shopping in while she

> waits.

> Talk about being independent! It is harder than it sounds. We did

> practice

> this with her before she started because finding the train back is the

> most

> confusing part. It took me weeks to figure it out when we first moved

> here and

> she did it in two days.

>

> Better is that Patty is really pleased with herself. She's coming back to

> being my chatty Patty again. And by the way this has all been occurring

> while

> she's been going thorough her surgery and illnesses.

>

> We'll see where this will lead Patty. It's all good.

>

> The only bad thing in this is that we have had tons of snow today. She

> goes

> in bright and early in the morning. Guess she'll have to bundle up.

>

> Wahoo

>

>

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

>

>

>

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