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Rosie-

I also distribute both! The thing I've been sharing lately is that both can

be true for the same family. There are times when I feel like I'm in

Holland and times when I feel like I'm in Beirut. I used to think I was

crazy - but then I realized that they are both parts of my truth. Our lives

are full of dichotomies so why not this one? It'll be the topic of another

column!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

lie Parrish

Sent: Friday, January 12, 2007 6:57 AM

To: CHARGE

Subject: Re: My first column

Michele,

Great article! I agree with what you said about our thoughts and

beliefs evolving. That's true of everyone. But you hit it dead-on for

parents of children with special needs. Your article reminded me a bit

of the " Welcome to Holland " essay. When I first read that, I thought

this is so wonderful and true. Then, a few years later when I was

teaching a families course at the university, I ran across the rebuttal

essay, " Welcome to Beirut " and that one rang much truer. Now, I

distribute both of those to my students so they understand that

families sometimes have different approaches/perceptions, or that their

perceptions definitely can change over time.

Rosie (Neal, 11, CHARGE; -marie, 6)

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Rosie,

Have you seen Chantelle's poem related to " Welcome to Holland " , called " I am

Holland " ? If not, you might want to read it and consider adding it to your

already excellent choices of " Welcome to Holland " and " Welcome to Beirut " . It

would add other vital aspects to the issues.

In what area or field are you pursuing your Ph.D.? It sounds like you are

already having a striking influence on students. Is your ultimate goal at this

time to teach or ?.

Mom to Kendra, and Camille

Re: My first column

Michele,

Great article! I agree with what you said about our thoughts and

beliefs evolving. That's true of everyone. But you hit it dead-on for

parents of children with special needs. Your article reminded me a bit

of the " Welcome to Holland " essay. When I first read that, I thought

this is so wonderful and true. Then, a few years later when I was

teaching a families course at the university, I ran across the rebuttal

essay, " Welcome to Beirut " and that one rang much truer. Now, I

distribute both of those to my students so they understand that

families sometimes have different approaches/perceptions, or that their

perceptions definitely can change over time.

Rosie (Neal, 11, CHARGE; -marie, 6)

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Michele

This is how it is!! you could not have captured it any better, its

perfect and so very very true!!

well done Les x

> Rosie,

>

> Have you seen Chantelle's poem related to " Welcome to Holland " , called " I am

> Holland " ? If not, you might want to read it and consider adding it to your

> already excellent choices of " Welcome to Holland " and " Welcome to Beirut " .

> It would add other vital aspects to the issues.

>

> In what area or field are you pursuing your Ph.D.? It sounds like you are

> already having a striking influence on students. Is your ultimate goal at

> this time to teach or ?.

>

>

> Mom to Kendra, and Camille

> Re: My first column

>

>

> Michele,

> Great article! I agree with what you said about our thoughts and

> beliefs evolving. That's true of everyone. But you hit it dead-on for

> parents of children with special needs. Your article reminded me a bit

> of the " Welcome to Holland " essay. When I first read that, I thought

> this is so wonderful and true. Then, a few years later when I was

> teaching a families course at the university, I ran across the rebuttal

> essay, " Welcome to Beirut " and that one rang much truer. Now, I

> distribute both of those to my students so they understand that

> families sometimes have different approaches/perceptions, or that their

> perceptions definitely can change over time.

> Rosie (Neal, 11, CHARGE; -marie, 6)

>

>

>

>

>

>

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Michele,

Sorry to take so long to reply. We've been out of town for several days

visiting family, so I'm just now plowing through all the list posts.

You wrote:

We all need to write an " Support Warehouse Order " form to add to our

manuals! In fact, wouldn't it be a good addition to the Foundation website

to have a compilation of profiles of our kids - their dx's as well as the

needed supports that go with that?? I know I'd find it helpful to know what

other kids like Aubrie are getting (or needing and not getting).

I think that's a great idea! I think it would be really helpful for all of

us--new parents and not-so-new parents included.

I wonder if someone here would be willing to draft some kind of brief form

that we could all use, so that everyone's info is similar in nature.

Volunteers??

, mom to (4)

http://kauffmanlak.blogspot.com/

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

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-

You're onto something now. A form that had all possible supports listed so

that we check which our kids have gotten in the past, are getting now, need

but aren't getting, or will need in the future. Then room to list anything

additional " others " . I guess we'd have to list our kid's age, dx's, and

school placement (current and past). Anything else we need to add?? I

would create the form and compile the replies if we can wait however long it

takes me to get it done.

- Can the yahoo groups poll do something this lengthy??

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Kauffman

Sent: Monday, January 15, 2007 2:36 PM

To: CHARGE

Subject: Re: My first column

Michele,

Sorry to take so long to reply. We've been out of town for several days

visiting family, so I'm just now plowing through all the list posts.

You wrote:

We all need to write an " Support Warehouse Order " form to add to our

manuals! In fact, wouldn't it be a good addition to the Foundation website

to have a compilation of profiles of our kids - their dx's as well as the

needed supports that go with that?? I know I'd find it helpful to know what

other kids like Aubrie are getting (or needing and not getting).

I think that's a great idea! I think it would be really helpful for all of

us--new parents and not-so-new parents included.

I wonder if someone here would be willing to draft some kind of brief form

that we could all use, so that everyone's info is similar in nature.

Volunteers??

, mom to (4)

http://kauffmanlak. <http://kauffmanlak.blogspot.com/> blogspot.com/

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This would be great, Michele! I'm willing to help out if you need it. I like

your idea of using check boxes as much as possible--that will keep everyone on

the same track and simplify the compilation. Maybe we could have different

categories of CHARGE issues that people could check off--vision, hearing, heart,

atresia, feeding, balance, sensory, sleep, endo, etc. Then under each of those,

possible supports they are getting/using, and then maybe a place under that for

additional notes for each category if people had additional info they wanted to

include? Of course, we'll need all the general info--name, location, age, etc.

And a category for school would be good too--what type of school attended, the

supports received there, etc. Does this sound along the lines you were

thinking?

, mom to (4)

http://kauffmanlak.blogspot.com/

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

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Yep, that's what I had in mind exactly. I wonder where we start?? Using

the manual as a guide to the possibilities in each area? Seems like we

should create a draft and then pass it around a bit for revision. I'll be

good at including everything we've experienced, but I know I'll forget

things and leave out things we haven't experienced. We'll need to make use

of all the intelligence and collective-memory here on the list to get a good

document together.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Kauffman

Sent: Monday, January 15, 2007 11:06 PM

To: CHARGE

Subject: Re: My first column

This would be great, Michele! I'm willing to help out if you need it. I like

your idea of using check boxes as much as possible--that will keep everyone

on the same track and simplify the compilation. Maybe we could have

different categories of CHARGE issues that people could check off--vision,

hearing, heart, atresia, feeding, balance, sensory, sleep, endo, etc. Then

under each of those, possible supports they are getting/using, and then

maybe a place under that for additional notes for each category if people

had additional info they wanted to include? Of course, we'll need all the

general info--name, location, age, etc. And a category for school would be

good too--what type of school attended, the supports received there, etc.

Does this sound along the lines you were thinking?

, mom to (4)

http://kauffmanlak. <http://kauffmanlak.blogspot.com/> blogspot.com/

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kim great to c u in here again

>

> HI Michele,

>

> I am so glad you have the opportunity to write this column. This was

> wonderful.

>

> Kim

> Certified HANDLE Screener and Intern

> Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

> and wife to Roy who makes all things possible in our lives.

>

> PS - The National media will pick up on it soon, and then it will be

> Oprah before you know it.

>

>

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Oprah -- yes, well, she'll be knocking on my door soon, I'm sure!

Michele W

Re: My first column

HI Michele,

I am so glad you have the opportunity to write this column. This was wonderful.

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

and wife to Roy who makes all things possible in our lives.

PS - The National media will pick up on it soon, and then it will be

Oprah before you know it.

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Yes, and well she should. You have a lot of wisdom about a lot of issues, some

of which are related to CHARGE. CHARGE is, in some ways, incredibly more

complex than can be imagined. That you bring clarity to people on the issues is

just phenomenal!

:-)

Re: My first column

HI Michele,

I am so glad you have the opportunity to write this column. This was

wonderful.

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

and wife to Roy who makes all things possible in our lives.

PS - The National media will pick up on it soon, and then it will be

Oprah before you know it.

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