Welcome Sue!

[Guest guest]

Hi Sara!

I was nosing around on " onelist " for a list on LKS for my sister-in-law.

(Her son, may or may not have it). They dumped us when we adopted " disabled "

kids, but now I am her new best friend. Anyway, I think I may have goofed

with this list. I thought it was for anyone who had 2 kids with DS, but I

see in your welcome letter is says:

" This listserv is designed for parents of multiples

(twins, triplets, etc.) in which one or more of the

children have Down syndrome. "

Since I don't have any twins or triplets, I'm not sure I belong here.

The boys are doing well. I gave a talk to Zack's class about DS (while he

was in speech). They were really wonderful. They had lots of great things

to say about Zack and one girl even improved my " Donut hole story " . I sent a

note home to the parents with our phone number, in case they had questions.

The children all asked if they could call Zack. I told them they could, if

it was o.k. with their parents. Everyone promised to call - no one did. I

waited a week - I was sooo disappointed. Then today, the phone rang. A

little boy asked for Zack! I listened on the extension, just in case he

asked Zack over or something. They just chatted and said goodbye in a few

minutes. I am on Cloud 9! Another boy in Zack's class draws him a smiley

face every day he does all his work. That is so sweet! I've always said,

" It's not the kids that don't accept Zack - it's the parents! " Maybe if I

keep pushing, I can win them over too!

Matt and Zack swim and ice skate still. Zack is having some trouble

swimming, He wants to go, but cries while he's there. I think we changed

teachers too many times. College kids are unpredictable - the keep quitting.

Now, the owner of the swim club is giving them lessons. (He doesn't give

anyone else lessons - we are special!) Matt is swimming like a fish, but

doesn't like skating. Zack has quit using an aide for basketball. She just

sits on the sidelines for moral support.

is walking everywhere and destroying everything in his path! He is

eating mushy table foods. He has been having trouble with his feeding tube.

The balloons keep breaking. One in 3 weeks and one in 1 week. They are

supposed to last a month. We put him on antacid, quit giving him his oil,

nothing works. My insurance company will be none too happy, the buttons cost

$190 each!

Take care and let me know how it's going with you! I'll send a photo when we

do our annual Christmas photo shoot!

Sue

[Guest guest]

Sorry everyone! Sent the last message to the list in error! Please ignore.

Tired mom syndrome!

[Guest guest]

Sue,

You are MORE than welcome here! You have two boys with

DS... and you are NOT the only one! I need to change

my wording in the welcome letter!

HOOORAY for Zack's friend! You're right, it's the

parents, not the kids. Everyone loves Zack, how could

they not? ... WALKING?! Wow! That boy is one of

the strongest kids I know! WAY TO GO ALEX! And Matt...

the superhero (is he still into superheros?) ... he's

definatly kicking Superman's butt!

I love hearing about your boys! I can't wait to see

the x-mas photo this year! I have the last two ...

it's sooooo nice to see how well they are doing and

how big they get after each year!

Cheers,

Sara

--- Zmadad@... wrote:

> From: Zmadad@...

>

> Hi Sara!

>

> I was nosing around on " onelist " for a list on LKS

> for my sister-in-law.

> (Her son, may or may not have it). They dumped us

> when we adopted " disabled "

> kids, but now I am her new best friend. Anyway, I

> think I may have goofed

> with this list. I thought it was for anyone who had

> 2 kids with DS, but I

> see in your welcome letter is says:

>

> " This listserv is designed for parents of multiples

> (twins, triplets, etc.) in which one or more of the

> children have Down syndrome. "

>

> Since I don't have any twins or triplets, I'm not

> sure I belong here.

>

> The boys are doing well. I gave a talk to Zack's

> class about DS (while he

> was in speech). They were really wonderful. They

> had lots of great things

> to say about Zack and one girl even improved my

> " Donut hole story " . I sent a

> note home to the parents with our phone number, in

> case they had questions.

> The children all asked if they could call Zack. I

> told them they could, if

> it was o.k. with their parents. Everyone promised

> to call - no one did. I

> waited a week - I was sooo disappointed. Then

> today, the phone rang. A

> little boy asked for Zack! I listened on the

> extension, just in case he

> asked Zack over or something. They just chatted and

> said goodbye in a few

> minutes. I am on Cloud 9! Another boy in Zack's

> class draws him a smiley

> face every day he does all his work. That is so

> sweet! I've always said,

> " It's not the kids that don't accept Zack - it's the

> parents! " Maybe if I

> keep pushing, I can win them over too!

>

> Matt and Zack swim and ice skate still. Zack is

> having some trouble

> swimming, He wants to go, but cries while he's

> there. I think we changed

> teachers too many times. College kids are

> unpredictable - the keep quitting.

> Now, the owner of the swim club is giving them

> lessons. (He doesn't give

> anyone else lessons - we are special!) Matt is

> swimming like a fish, but

> doesn't like skating. Zack has quit using an aide

> for basketball. She just

> sits on the sidelines for moral support.

>

> is walking everywhere and destroying everything

> in his path! He is

> eating mushy table foods. He has been having

> trouble with his feeding tube.

> The balloons keep breaking. One in 3 weeks and one

> in 1 week. They are

> supposed to last a month. We put him on antacid,

> quit giving him his oil,

> nothing works. My insurance company will be none

> too happy, the buttons cost

> $190 each!

>

> Take care and let me know how it's going with you!

> I'll send a photo when we

> do our annual Christmas photo shoot!

>

> Sue

>

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

[Guest guest]

Welcome Sue,

I'm and I have 17 month old boy/girl

twins. My little boy, Landon has DS and my little girl

Ashton doesn't. I look forward to hearing more about

your boys. How old are they? You are in the right

place! There are several other moms on here that have

more than one child with DS who are not from a

multiple birth. Again, welcome to the list.

mom to Landon

(DS) and Ashton 17 months

--- Sara Greenberg <dsyndrome@...> wrote:

>

> Sue,

>

> You are MORE than welcome here! You have two boys

> with

> DS... and you are NOT the only one! I need to change

> my wording in the welcome letter!

>

> HOOORAY for Zack's friend! You're right, it's the

> parents, not the kids. Everyone loves Zack, how

> could

> they not? ... WALKING?! Wow! That boy is one of

> the strongest kids I know! WAY TO GO ALEX! And

> Matt...

> the superhero (is he still into superheros?) ...

> he's

> definatly kicking Superman's butt!

>

> I love hearing about your boys! I can't wait to see

> the x-mas photo this year! I have the last two ...

> it's sooooo nice to see how well they are doing and

> how big they get after each year!

>

> Cheers,

> Sara

>

> --- Zmadad@... wrote:

> > From: Zmadad@...

> >

> > Hi Sara!

> >

> > I was nosing around on " onelist " for a list on LKS

> > for my sister-in-law.

> > (Her son, may or may not have it). They dumped us

> > when we adopted " disabled "

> > kids, but now I am her new best friend. Anyway, I

> > think I may have goofed

> > with this list. I thought it was for anyone who

> had

> > 2 kids with DS, but I

> > see in your welcome letter is says:

> >

> > " This listserv is designed for parents of

> multiples

> > (twins, triplets, etc.) in which one or more of

> the

> > children have Down syndrome. "

> >

> > Since I don't have any twins or triplets, I'm not

> > sure I belong here.

> >

> > The boys are doing well. I gave a talk to Zack's

> > class about DS (while he

> > was in speech). They were really wonderful. They

> > had lots of great things

> > to say about Zack and one girl even improved my

> > " Donut hole story " . I sent a

> > note home to the parents with our phone number, in

> > case they had questions.

> > The children all asked if they could call Zack. I

> > told them they could, if

> > it was o.k. with their parents. Everyone promised

> > to call - no one did. I

> > waited a week - I was sooo disappointed. Then

> > today, the phone rang. A

> > little boy asked for Zack! I listened on the

> > extension, just in case he

> > asked Zack over or something. They just chatted

> and

> > said goodbye in a few

> > minutes. I am on Cloud 9! Another boy in Zack's

> > class draws him a smiley

> > face every day he does all his work. That is so

> > sweet! I've always said,

> > " It's not the kids that don't accept Zack - it's

> the

> > parents! " Maybe if I

> > keep pushing, I can win them over too!

> >

> > Matt and Zack swim and ice skate still. Zack is

> > having some trouble

> > swimming, He wants to go, but cries while he's

> > there. I think we changed

> > teachers too many times. College kids are

> > unpredictable - the keep quitting.

> > Now, the owner of the swim club is giving them

> > lessons. (He doesn't give

> > anyone else lessons - we are special!) Matt is

> > swimming like a fish, but

> > doesn't like skating. Zack has quit using an aide

> > for basketball. She just

> > sits on the sidelines for moral support.

> >

> > is walking everywhere and destroying

> everything

> > in his path! He is

> > eating mushy table foods. He has been having

> > trouble with his feeding tube.

> > The balloons keep breaking. One in 3 weeks and

> one

> > in 1 week. They are

> > supposed to last a month. We put him on antacid,

> > quit giving him his oil,

> > nothing works. My insurance company will be none

> > too happy, the buttons cost

> > $190 each!

> >

> > Take care and let me know how it's going with you!

>

> > I'll send a photo when we

> > do our annual Christmas photo shoot!

> >

> > Sue

> >

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

[Guest guest]

Hi Sue- My name is Carolyn and I am one of the Moms with 2 children with DS

that don't come from multiple births. Emma is 3 1/2 and Nicki is 2 1/2.

They are my youngest of 4 children but I have to admit that having them so

close in age is almost like having twins!!!! We enjoy them immensely and

their older siblings on and think they are the stars, the sun

with wind and the moon all rolled into 2 packages. They both have an

amazing sense of humour and manke me laugh everyday - what more could I

want!!! (Emma could be a little more vocal.....but that's another story!).

Everyone on this list is so nice and supportive, you indeed are in the right

place - don't you just hate it when you send a message to the wrong place

and it just happens to go to a whole list of people!!!! I would love to

hear more about your children so don't you go anywhere!!!

You have jsut enough time to get to know some of us before December 9th 9.30

EST when we are having a live chat for Christmas! There will be a reminder

posted before then but put it in you diary!

Carolyn

Mum to on 8ish, 61/2, Emma (ds)31/2 and Nicki (ds)2 1/2

[Guest guest]

WELCOME SUE!!!!!!!!

HI I am also a mom of 2 children with DS that are not mulitplie birth. My

name is . I have 6yr and Dayton 17 months.They both are the

light of my life. We have had some really hard times in the past. We are

getting along pretty good now. I do not have any other children due to

facts that my chances are so great to have another child with DS. So for now

our family is complete with my husband and our kids.

I have found this list a great support. Hope you do to. Can't wait to get to

know your family.

God Bless

Medrano

Re: Welcome Sue!

>From: " tonycarolyn " <tonycarolyn@...>

>

>Hi Sue- My name is Carolyn and I am one of the Moms with 2 children with DS

>that don't come from multiple births. Emma is 3 1/2 and Nicki is 2 1/2.

>They are my youngest of 4 children but I have to admit that having them so

>close in age is almost like having twins!!!! We enjoy them immensely and

>their older siblings on and think they are the stars, the sun

>with wind and the moon all rolled into 2 packages. They both have an

>amazing sense of humour and manke me laugh everyday - what more could I

>want!!! (Emma could be a little more vocal.....but that's another story!).

>

>Everyone on this list is so nice and supportive, you indeed are in the

right

>place - don't you just hate it when you send a message to the wrong place

>and it just happens to go to a whole list of people!!!! I would love to

>hear more about your children so don't you go anywhere!!!

>

>You have jsut enough time to get to know some of us before December 9th

9.30

>EST when we are having a live chat for Christmas! There will be a reminder

>posted before then but put it in you diary!

>

>Carolyn

>Mum to on 8ish, 61/2, Emma (ds)31/2 and Nicki (ds)2 1/2

>

>>http://DSyndrome.com/Multiples

>

[Guest guest]

Thanks for that wonderful summary of your background -- IPADD

members with transition-age or approaching-transition-age students,

here's your chance to get some questions answered. FYI, IPADD has

two documents from Sue's TOTAL project referenced in our Files and

Links sections on Transition:

http://www.isbe.state.il.us/spec-ed/html/transition_video.htm#mod1

This link takes you to a series of videos and worksheets that cover

this often-confusing process called transition.

http://www.vermiliontpc.com/iep/student_directed_iep.htm

This link should take you to a project called the Student-Directed

IEP that was funded thru TOTAL and is the best online, visually-

presented IEP format I've ever seen.

Sue, if what I've posted here is out-of-date or you'd like to

comment on any of the materials (how, when and by whom they can best

be used, etc) pls share with us.

We really appreciate you being with us this week, and for sharing

some of your daughter's story with us. You're an inspiration to

many!

Laurie