New member

Posted October 10, 2005 · October 10, 2005

I have 2 children with down syndrome who are not twins but they came to me by adoption not naturally. The important thing for you to remember is just because your first has had a lot of serious health concerns your second may not. My oldest son with DS has had every medical problem possible I swear and my youngest with ds has been very healthy. I just think of how much knowledge you will have in dealing with your second child w/ ds. I think you are very lucky I have always wanted a little girl with ds..................Merry

Merry Low Parent to 13 DS, congenital heart defect, congestive heart failure, Leukemia(in remission), chronic lung disease, asthma, Failure to thrive, and osteoperosis; Kate 12 ADHD, NAS, Long QT Syndrome and tourettes; Jaykob 9 DS, ADHD, moderate hearing loss

-- New member

1. What is your name?

Koz-Riddle

2. What are the first names of your children and how old are they?

-Taryn (3 yrs.)

-Cate (18 months with ds)

-Another child due in Feb. 06, diagnosed with down syndrome via amnio.

4. Which state or country do you live in?

Texas

5. Anything else you want to tell us?

Looking for other families who have had 2 children with down syndrome (not as twins or triplets)

We are having a rough time with the diagnosis of our third child and considering adoption. Our 2nd daughter had two major abdominal surgeries in her first year of life and has therapy or doctor visits every week. My husband and I have kept a positive attitude and are trying to provide the best possible environment for her. We are committed to doing whatever we need to do to help her live her best life.

We were so excited about the third pregnancy and have just been devasted by the news of this child's diagnosis. I think we were just starting to truly accept Cate's situation. (her down syndrome was confirmed at birth). If anyone has been in this situation, any advice would be appreciated. I truly admire people who say I will just deal with the situation. One of my biggest fears is resenting this child and not being overjoyed at the arrival of our new daughter. (Of course, the pregnancy hormones are not helping at all).

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Posted October 10, 2005 · October 10, 2005

You have found the right place for questions and support. Welcome.

mom to Amy 18, Kelsey 15, Davey (DS) 5 and Will 5

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of mary koz-riddleSent: Monday, October 10, 2005 8:28 AMTo: Multiples-DS Subject: New member

1. What is your name?

Koz-Riddle

2. What are the first names of your children and how old are they?

-Taryn (3 yrs.)

-Cate (18 months with ds)

-Another child due in Feb. 06, diagnosed with down syndrome via amnio.

4. Which state or country do you live in?

Texas

5. Anything else you want to tell us?

Looking for other families who have had 2 children with down syndrome (not as twins or triplets)

We are having a rough time with the diagnosis of our third child and considering adoption. Our 2nd daughter had two major abdominal surgeries in her first year of life and has therapy or doctor visits every week. My husband and I have kept a positive attitude and are trying to provide the best possible environment for her. We are committed to doing whatever we need to do to help her live her best life.

We were so excited about the third pregnancy and have just been devasted by the news of this child's diagnosis. I think we were just starting to truly accept Cate's situation. (her down syndrome was confirmed at birth). If anyone has been in this situation, any advice would be appreciated. I truly admire people who say I will just deal with the situation. One of my biggest fears is resenting this child and not being overjoyed at the arrival of our new daughter. (Of course, the pregnancy hormones are not helping at all).

Posted October 11, 2005 · October 11, 2005

,

Welcome to the group, I see you had some wonderful input from other moms of multiple DS children. I would like to tell you our story, when I read that you feared resenting your new daughter, it hit home for me. My husband and I went for many years w/o having a child then tried invitro and were successful, at 16 weeks our AFP came back very low, a tell tale sign for DS, we had an amnio, we had decided if the results were positive we would terminate, the tests were fine and Jake our oldest was born. We tried IVF again 2 years later and became pregnant w/ triplets, only when theywere born we found out Zack baby A has DS. I have a 43 year old brother w/DS who was instituationalized at 6 weeks, doesn't speak, isn't potty trained, and on a lot of drugs. He is the very saddest part of my life, the sorrow we feel for what has been stolen from him never goes away. He was at Willowbrook a terrible NY instituation and we as little girls visited him there and were scared to death of these "strange" people. So as you can imagine the news of Zack's diagnosis sent me off the deep end. It took time, but now at 7 Zack is the light of my life, through him we have experienced such love and pure spirit, our whole family has been healed and we have a new found appreciation for all of Gods creations. He is not any of the terrible things I imagined he would be. More wonderful people have entered our lives because of Zack than I would have dreamed of. Give your self a chance to work through the news.

Irene

Jake 9

Zack DS, , 7

New member

1. What is your name?

Koz-Riddle

2. What are the first names of your children and how old are they?

-Taryn (3 yrs.)

-Cate (18 months with ds)

-Another child due in Feb. 06, diagnosed with down syndrome via amnio.

4. Which state or country do you live in?

Texas

5. Anything else you want to tell us?

Looking for other families who have had 2 children with down syndrome (not as twins or triplets)

We are having a rough time with the diagnosis of our third child and considering adoption. Our 2nd daughter had two major abdominal surgeries in her first year of life and has therapy or doctor visits every week. My husband and I have kept a positive attitude and are trying to provide the best possible environment for her. We are committed to doing whatever we need to do to help her live her best life.

We were so excited about the third pregnancy and have just been devasted by the news of this child's diagnosis. I think we were just starting to truly accept Cate's situation. (her down syndrome was confirmed at birth). If anyone has been in this situation, any advice would be appreciated. I truly admire people who say I will just deal with the situation. One of my biggest fears is resenting this child and not being overjoyed at the arrival of our new daughter. (Of course, the pregnancy hormones are not helping at all).

Posted October 13, 2005 · October 13, 2005

1. What is your name?

2. What are the first names of your children and how

old are they? Vinnie (DS) & Sloan, 7 years

What happened to # 3 ??

4. Which state or country do you live in? Virginia

5. Anything else you want to tell us? Vinnie suffers

from Alopecia (baldness) & seasonal allergies, but he

has been tested for allergies and tested negative to

grass, mold, dog... and many more... I'm tired of

hearing the " he'll grow out of it "

~, Moma to Vinnie (DS) & Hey Mom, to Sloan

__________________________________

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Posted October 13, 2005 · October 13, 2005

Hi

I actually only read with this group and haven't posted in a long

time, but I am on a couple other groups and they said that I should

come over and share my experience. I am Anne, mom to four children

Jimmy 11, Danny 9, Mikey 6 (ds) and 4 (ds). I like you found

out in pregnancy that would also have DS. I was completely

devastated. I honestly did not think I could handle it again. I am

not a genetic carrier and neither is my husband Tom. I too felt God

was totally abandoning me and was very angry at him for quite

awhile. I will admit I had trouble immediately bonding with

because I had so much emotion to work through. But four years later

I could never imagine life without her. She is like the glue that

holds the family together. She is an absolute joy. Mikey and she

are best friends and I know in their lives they will always have

each other. God's plan was more perfect than mine and I feel so

blessed. Mikey has been very sick (he was diagnosed with leukemia

when he was almost four) but has been healthy as an ox. I

feel that has been a blessing. She is so positive, so energetic, so

full of life and she has been nothing but a blessing. Our family is

so much closer because Mikey and are in it. My two older boys

love their siblings and they are so good with them. I know they are

better human beings because of Mikey and . You have a tough

road and tough decision, but if you would like to talk or email, I

would be more than willing to do that. My email is

tomannemiller@.... This group is awesome and they can be a

huge support for you. Just know I know what you are feeling but

there really is great hope at the end of it all.

Good luck

Anne

>

> 1. What is your name?

>

> Koz-Riddle

>

> 2. What are the first names of your children and how old are they?

>

> -Taryn (3 yrs.)

> -Cate (18 months with ds)

> -Another child due in Feb. 06, diagnosed with down syndrome via

amnio.

>

> 4. Which state or country do you live in?

> Texas

>

> 5. Anything else you want to tell us?

>

> Looking for other families who have had 2 children with down

syndrome (not as twins or triplets)

> We are having a rough time with the diagnosis of our third child

and considering adoption. Our 2nd daughter had two major abdominal

surgeries in her first year of life and has therapy or doctor visits

every week. My husband and I have kept a positive attitude and are

trying to provide the best possible environment for her. We are

committed to doing whatever we need to do to help her live her best

life.

>

> We were so excited about the third pregnancy and have just been

devasted by the news of this child's diagnosis. I think we were just

starting to truly accept Cate's situation. (her down syndrome was

confirmed at birth). If anyone has been in this situation, any

advice would be appreciated. I truly admire people who say I will

just deal with the situation. One of my biggest fears is resenting

this child and not being overjoyed at the arrival of our new

daughter. (Of course, the pregnancy hormones are not helping at all).

>

Posted February 8, 2006 · February 8, 2006

Welcome Heath, Dana and Family,

This is truly a family group---they are all the best. They're here in good and bad times. Sounds like you surely have your hands full. I hope everyone is healthy and happy------

Sherrill

mom to Jillian age 8, and (D/s) age 4

Posted September 10, 2006 · September 10, 2006

Hi! I just joined the group and thought I would send an intro out.

I'm Mimi, mom to 6 ~ Bethany, Lauryn, Maurra, Noah, Garrett &

. Lauryn is 16 and has Down Syndrome & Autism. One doctor

calls it PDD another calls it Autism, so we are going to a third for

a " tie breaker " . Lauryn is a junior in high school and doing great!

Bethany is 18 and a senior in high school... Maurra is 10 and has

cerebral palsy, asperger's syndrome and bipolar. Noah is deceased

(stillborn 7-5-00), Garrett is 5 and has a mood disorder & anxiety

disorder. is 4 with fetal valproate acid syndrome,

encephalopathy, asthma and global delays.

I am a stay at home mom for the most part... I am working on

becoming a Parent Leader for our state and a support group

coordinator. I am a state certified parent advocate for the state

we used to live in.

We live in Green Bay, WI but I was raised in Darien, IL - married a

Navy man, and we spent a good portion of our years in West Virginia

(his home state) - which I still have the accent. :-)

Well, I hope you all have a great Sunday! The men of my family are

going to watch the Green Bay Packer vs. Chicago Bears game... My

father lives with us, so not sure how today is going to be in my

living room. lol

Smiles~

Mimi

Posted September 10, 2006 · September 10, 2006

Welcome to this wonderful group, Mimi!

Liz-Mom to Tori 6 1/2 yrs.-Pa.

New member

Hi! I just joined the group and thought I would send an intro out.

I'm Mimi, mom to 6 ~ Bethany, Lauryn, Maurra, Noah, Garrett &

. Lauryn is 16 and has Down Syndrome & Autism. One doctor

calls it PDD another calls it Autism, so we are going to a third for

a " tie breaker " . Lauryn is a junior in high school and doing great!

Bethany is 18 and a senior in high school... Maurra is 10 and has

cerebral palsy, asperger's syndrome and bipolar. Noah is deceased

(stillborn 7-5-00), Garrett is 5 and has a mood disorder & anxiety

disorder. is 4 with fetal valproate acid syndrome,

encephalopathy, asthma and global delays.

I am a stay at home mom for the most part... I am working on

becoming a Parent Leader for our state and a support group

coordinator. I am a state certified parent advocate for the state

we used to live in.

We live in Green Bay, WI but I was raised in Darien, IL - married a

Navy man, and we spent a good portion of our years in West Virginia

(his home state) - which I still have the accent. :-)

Well, I hope you all have a great Sunday! The men of my family are

going to watch the Green Bay Packer vs. Chicago Bears game... My

father lives with us, so not sure how today is going to be in my

living room. lol

Smiles~

Mimi

Posted September 10, 2006 · September 10, 2006

Welcome to the gruop Mimi ~ I am mom to Dylan, 11, with DS/Autism/Diabetes. We

are in Delavan, Wisconsin. Does Lauryn attend the Syble Hopp School? I've

heard good things about it but have never talked to anyone who attended there.

Our son attends a similar type school here in Walworth County.

Becky

wi_advocate4kids wrote:

Hi! I just joined the group and thought I would send an intro out.

I'm Mimi, mom to 6 ~ Bethany, Lauryn, Maurra, Noah, Garrett &

. Lauryn is 16 and has Down Syndrome & Autism. One doctor

calls it PDD another calls it Autism, so we are going to a third for

a " tie breaker " . Lauryn is a junior in high school and doing great!

Bethany is 18 and a senior in high school... Maurra is 10 and has

cerebral palsy, asperger's syndrome and bipolar. Noah is deceased

(stillborn 7-5-00), Garrett is 5 and has a mood disorder & anxiety

disorder. is 4 with fetal valproate acid syndrome,

encephalopathy, asthma and global delays.

I am a stay at home mom for the most part... I am working on

becoming a Parent Leader for our state and a support group

coordinator. I am a state certified parent advocate for the state

we used to live in.

We live in Green Bay, WI but I was raised in Darien, IL - married a

Navy man, and we spent a good portion of our years in West Virginia

(his home state) - which I still have the accent. :-)

Well, I hope you all have a great Sunday! The men of my family are

going to watch the Green Bay Packer vs. Chicago Bears game... My

father lives with us, so not sure how today is going to be in my

living room. lol

Smiles~

Mimi

__________________________________________________

Posted September 10, 2006 · September 10, 2006

Hi Becky~

Lauryn doesn't attend Syble Hopp because we live within Green Bay city

limits... Syble Hopp only accepts students from surrounding areas, none living

in city limits... go figure... not sure as to why, but we did visit the school

" somewhat " when we were house hunting here before our move and I was not

impressed with the school in the least bit. We drove 15 hours up here and

actually had made an appt with the director and when we arrived, he would not

let us go anywhere except stand in the main entry way for over an hour just

talking... I was quite ticked and very put off by the school. So now we won't

even consider putting the kids into their summer camps - we used the city's park

program for special needs kids and the kids had a blast!

Sorry I couldn't come up with anything positive to say, but I can tell you

that I LOVE Green Bay's public schools that my kids are in... (3 different

ones) They have good IEP's, good supports, ect...

Mimi... mom to Lauryn 16/ds/autistic/mild hydrocephalic

Becky Kligora wrote:

Welcome to the gruop Mimi ~ I am mom to Dylan, 11, with

DS/Autism/Diabetes. We are in Delavan, Wisconsin. Does Lauryn attend the Syble

Hopp School? I've heard good things about it but have never talked to anyone who

attended there. Our son attends a similar type school here in Walworth County.

Becky

wi_advocate4kids wrote:

Hi! I just joined the group and thought I would send an intro out.

I'm Mimi, mom to 6 ~ Bethany, Lauryn, Maurra, Noah, Garrett &

. Lauryn is 16 and has Down Syndrome & Autism. One doctor

calls it PDD another calls it Autism, so we are going to a third for

a " tie breaker " . Lauryn is a junior in high school and doing great!

Bethany is 18 and a senior in high school... Maurra is 10 and has

cerebral palsy, asperger's syndrome and bipolar. Noah is deceased

(stillborn 7-5-00), Garrett is 5 and has a mood disorder & anxiety

disorder. is 4 with fetal valproate acid syndrome,

encephalopathy, asthma and global delays.

I am a stay at home mom for the most part... I am working on

becoming a Parent Leader for our state and a support group

coordinator. I am a state certified parent advocate for the state

we used to live in.

We live in Green Bay, WI but I was raised in Darien, IL - married a

Navy man, and we spent a good portion of our years in West Virginia

(his home state) - which I still have the accent. :-)

Well, I hope you all have a great Sunday! The men of my family are

going to watch the Green Bay Packer vs. Chicago Bears game... My

father lives with us, so not sure how today is going to be in my

living room. lol

Smiles~

Mimi

__________________________________________________

Posted September 10, 2006 · September 10, 2006

That's interesting ~ I would have been furious after that visit too! Kind of

makes you wonder why they wouldn't let you walk around. I've heard great things

about Green Bay Public schools too.

Becky

Wisconsin Advocate wrote:

Hi Becky~

Lauryn doesn't attend Syble Hopp because we live within Green Bay city limits...

Syble Hopp only accepts students from surrounding areas, none living in city

limits... go figure... not sure as to why, but we did visit the school

" somewhat " when we were house hunting here before our move and I was not

impressed with the school in the least bit. We drove 15 hours up here and

actually had made an appt with the director and when we arrived, he would not

let us go anywhere except stand in the main entry way for over an hour just

talking... I was quite ticked and very put off by the school. So now we won't

even consider putting the kids into their summer camps - we used the city's park

program for special needs kids and the kids had a blast!

Sorry I couldn't come up with anything positive to say, but I can tell you that

I LOVE Green Bay's public schools that my kids are in... (3 different ones) They

have good IEP's, good supports, ect...

Mimi... mom to Lauryn 16/ds/autistic/mild hydrocephalic

Becky Kligora wrote:

Welcome to the gruop Mimi ~ I am mom to Dylan, 11, with DS/Autism/Diabetes. We

are in Delavan, Wisconsin. Does Lauryn attend the Syble Hopp School? I've heard

good things about it but have never talked to anyone who attended there. Our son

attends a similar type school here in Walworth County.

Becky

wi_advocate4kids wrote:

Hi! I just joined the group and thought I would send an intro out.

I'm Mimi, mom to 6 ~ Bethany, Lauryn, Maurra, Noah, Garrett &

. Lauryn is 16 and has Down Syndrome & Autism. One doctor

calls it PDD another calls it Autism, so we are going to a third for

a " tie breaker " . Lauryn is a junior in high school and doing great!

Bethany is 18 and a senior in high school... Maurra is 10 and has

cerebral palsy, asperger's syndrome and bipolar. Noah is deceased

(stillborn 7-5-00), Garrett is 5 and has a mood disorder & anxiety

disorder. is 4 with fetal valproate acid syndrome,

encephalopathy, asthma and global delays.

I am a stay at home mom for the most part... I am working on

becoming a Parent Leader for our state and a support group

coordinator. I am a state certified parent advocate for the state

we used to live in.

We live in Green Bay, WI but I was raised in Darien, IL - married a

Navy man, and we spent a good portion of our years in West Virginia

(his home state) - which I still have the accent. :-)

Well, I hope you all have a great Sunday! The men of my family are

going to watch the Green Bay Packer vs. Chicago Bears game... My

father lives with us, so not sure how today is going to be in my

living room. lol

Smiles~

Mimi

__________________________________________________

Posted September 11, 2006 · September 11, 2006

Once I got the kids into GB schools, I have never looked back. Everything has

been great since our move here. We moved here without knowing a soul! I did a

search of the top 100 children's hospitals and Milw was 2nd. Then finding out

how great the schools are just made the move worth it.

Mimi

Becky Kligora wrote:

That's interesting ~ I would have been furious after that visit too!

Kind of makes you wonder why they wouldn't let you walk around. I've heard great

things about Green Bay Public schools too.