Jump to content
RemedySpot.com

New here

Rate this topic


Guest guest

Recommended Posts

Thanks for the welcome Carolyn! I know a few families like yours who have two biological kids with either Down's or autism. I have to admit that I find that situation to be remarkable, since the odds are against it, especially if the Down's isn't Translocation. Glad your kids are doing so well. I know how much I enjoy my girls! Nice to be here! Marilyn

Link to comment
Share on other sites

Hi Marilyn and welcome to this great group!

I'm Carolyn from New Zealand and am the mother of 4 kids. My youngest 2

girls both have Ds (and are my biological children). Emma is nearly 6 and

Nicki is nearly 5 and have Trisomy 21.

I thought about homeschooling.........for 1 second. I just felt that my

role as mother would conflict too much if I was also to become the educator

as well. Just my opinion though as I know many who successfully and happily

homeschool their children.

Nicki is now at a Montessori preschool and Emma has just started at a

Special School this year and is LOVING every minute of it. She is

blossoming in the caring and loving environment of that school - I'm

thrilled!

Again, welcome to you and your family to the group - I know you'll

thoroughly enjoy it.

Carolyn

Mum to on, , Emma (Ds) and Nicki (Ds)

www.geocities.com/nz_mom/sykesfamily.html

New here

> My name is Marilyn. just found this group. I live in NJ, and am the

> mother of 8 children, ages 2-23. The three middle girls, ages 7, 9,

> and 15, are all adopted and have DS. The youngest also has ADHD,

> Sensory Integration Disorder, and Celiac Disease. She is also Mosaic,

> not Trisomy 21. I suspect the other two girls also have Celiac

> Disease, and we're having them tested soon. The oldest is lower

> functioning than most kids with DS, plus we're now running into the

> adolescent female problems! I don't know of many people with more

> than one DS child, adopted or not, so I am glad to be here.I am also

> seriously considering homeschooling for the younger two girls, so if

> anyone here is doing that, feedback would be welcome. Guess that's

> it! Thanks for being here, and for letting me be here. Marilyn

>

>

> http://DSyndrome.com/Multiples

>

>

Link to comment
Share on other sites

Hi Gail! I live in Essex county! I have known two sets of twins and one set of triplets where one child had DS. One was a boy/girl set, but the boy was the one with DS. Thanks for saying "hi"! Marilyn

Link to comment
Share on other sites

Thanks for the welcome ! Two of our girls have tubes also. The three of them have functional heart murmurs (no serious defects, thank God!), and all three wear glasses. (7) was just diagnosed with Celiac Disease, and has ADHD and Sensory Integration, but all three girls are really basically fine. Could be a lot worse! I'm looking forward to meeting all of you! Marilyn

Link to comment
Share on other sites

Hi Marilyn,

Welcome to our group. You will find a lot of support and information from our group. I am Marcia, Mom to Lucas, who is 11 and Twins, and Sara, who are 7. Sara has DS and does not. We live in a small town in Central Oregon, where all of my kids go to the same public elementary school. Sara is doing well in an inclusion all-day kindergarten class with pull-out time for one on one instruction, as well as speech therapy. I have to say, every morning getting three kids to the bus by 7:25 a.m., makes me think about home schooling, but as Carolyn said, I just think about it for a minute and then I know that my children are in the best setting for each of them.

I look forward to hearing more about you and your family. It sounds like you have wonderful children.

Marcia

Link to comment
Share on other sites

WElcome Marilyn!

I'm Gail, Mom to 4. My last two are b/g twins, and Tara. Tara was

born with Ds. I'm also from NJ, northern NJ to be exact, although I grew

up in Bergen County, I now live in Sussex county.

Gail.......Bobby 8, Jillian 5 1/2, and Tara{Ds} 2yrs & 11 mos.

Link to comment
Share on other sites

Hi Marilyn, Welcome to the list. We have 4 kids at our house. Amy is 14, Kelsey is 11, Davey and Will just turned two last Saturday. Davey has DS. Davey just got tubes in his ears on Thursday. This is his second set. He got his first set at 9 months. Other than that he is very healthy. He is working very hard on his walking. Looking forward to hearing more about your family. New here My name is Marilyn. just found this group. I live in NJ, and am themother of 8 children, ages 2-23. The three middle girls, ages 7, 9,and 15, are all adopted and have DS. The youngest also has ADHD,Sensory Integration Disorder, and Celiac Disease. She is also Mosaic,not Trisomy 21. I suspect the other two girls also have CeliacDisease, and we're having them tested soon. The oldest is lowerfunctioning than most kids with DS, plus we're now running into theadolescent female problems! I don't know of many people with morethan one DS child, adopted or not, so I am glad to be here.I am alsoseriously considering homeschooling for the younger two girls, so ifanyone here is doing that, feedback would be welcome. Guess that'sit! Thanks for being here, and for letting me be here. Marilynhttp://DSyndrome.com/Multiples

Link to comment
Share on other sites

Hi Marilyn and Welcome to the group!

I am Pam and my family and I live in Tennessee. I have 4 children, Josh 20, Dusty 15 and identical twin girls Hannah and , both DS age 6.

Wow, 8 kids! You are a busy Mom! I look forward to hearing more about your family.

sahmomof8 <sahmomof8@...> wrote: My name is Marilyn. just found this group. I live in NJ, and am the mother of 8 children, ages 2-23. The three middle girls, ages 7, 9, and 15, are all adopted and have DS. The youngest also has ADHD, Sensory Integration Disorder, and Celiac Disease. She is also Mosaic, not Trisomy 21. I suspect the other two girls also have Celiac Disease, and we're having them tested soon. The oldest is lower functioning than most kids with DS, plus we're now running into the adolescent female problems! I don't know of many people with more than one DS child, adopted or not, so I am glad to be here.I am also seriously considering homeschooling for the younger two girls, so if anyone here is doing that, feedback would be welcome. Guess that's it! Thanks for being here, and for letting me be here. Marilynhttp://DSyndrome.com/Multiples

Link to comment
Share on other sites

Marcia--My oldest daughter with DS, Meaghan (15), gets on the bus around the same time as your kids. She's the earliest bus time, and she's the one I was not thinking of homeschooling, so even if I did, I'd still be getting up at that horrendous hour for the bus! So I sure wouldn't gain anything in that way! The other two girls get on almost an hour later. So many here with twins! I always wanted twins--but not anymore! I'm a bit too old for that! :) Thanks for the welcome. Marilyn

Link to comment
Share on other sites

Hi Sara! Well, you surprised me! I guess I had just assumed that the list owner would be a mom! Glad to be here. I will definitely check out those websites you gave me. I am looking forward to sharing with the other moms here. There's no local DS support group where I live now (northern NJ). I had helped to start one in the Poconos when Meaghan was a baby (with a woman named Sara!), and that group grew very large, and was very active, so I kind of miss that. This is the next best thing. Marilyn

Link to comment
Share on other sites

Gail--OMG!!! You're 5 minutes away from me twice a week! Both my younger girls graduated from Stepping Stones. Just ask anyone there about and Conover. They'll know! Anytime you want to meet at the diner while your little one's in school, just let me know! Nice to meet you! Marilyn

Link to comment
Share on other sites

Hi Marilyn!

Welcome to the group! We all look forward to getting to know you and your

girls better!

I am Sara, the list owner. I do not have any kids yet... I'm a student at

University at Buffalo and have been working with and for kids with DS for

about 8 years. More info on me at: http://www.DSyndrome.com if you are

interested! No test at the end! :o))

This group is great! The best mothers on Earth are here to offer support

and advice (and that isn't at all biased!). We are mostly mothers of twins

or triplets (either indentical twins... or non-identical with one or both

kids with DS) and a few seperate-birth twins. There are a few mom's like

yourself, who adopted, as well. We sure are glad you joined us! Make sure

you check out all of our beautiful children on the list's web site under

" photos " and add pictures of your girls if you can! The site is:

Multiples-DS/

Cheers!

Sara

--On Saturday, February 23, 2002, 5:50 PM +0000 sahmomof8

<sahmomof8@...> wrote:

> My name is Marilyn. just found this group. I live in NJ, and am the

> mother of 8 children, ages 2-23. The three middle girls, ages 7, 9,

> and 15, are all adopted and have DS. The youngest also has ADHD,

> Sensory Integration Disorder, and Celiac Disease. She is also Mosaic,

> not Trisomy 21. I suspect the other two girls also have Celiac

> Disease, and we're having them tested soon. The oldest is lower

> functioning than most kids with DS, plus we're now running into the

> adolescent female problems! I don't know of many people with more

> than one DS child, adopted or not, so I am glad to be here.I am also

> seriously considering homeschooling for the younger two girls, so if

> anyone here is doing that, feedback would be welcome. Guess that's

> it! Thanks for being here, and for letting me be here. Marilyn

>

>

> http://DSyndrome.com/Multiples

>

>

Link to comment
Share on other sites

Marilyn, Gail here.......

Tara attends school twice a week in Livingston, NJ called Stepping

Stones. Have you heard of it? I go with Tara and her twin, and my

5 and a-half-year old Jillian{who has pm Kindergarten, so we make it

home on time}every Tues and Thurs, 9-11 am........and I am right now

piling my case to Vernon{my district} to convince them to keep/let Tara

stay at Stepping Stones. I have visited my districts preschool disabled,

and was not pleased at all, Tara would be lost with all thoses

speech-delayed children..............Tara and turn three March 22,

and 23rd {thats another story!}

Gail........Bobby 8, Jillian 5 1/2, and Tara{Ds} 2 & 11mos

Link to comment
Share on other sites

Hi ! Finally a homeschooler! Did you know there's another group just for people homeschooling kids with DS? Or is that spam? I hope not. It's not my group, although I did join. There's also a group called NATHHAN. It's a nationwide organization for people who homeschool kids with all sorts of disabilities. It's really great when it comes to resources. The website is www.nathhan.com. If you need resources, feel free to contact me off-list. I've got a lot of curriculum ideas, videos, websites, etc. I am not new to homeschooling. I've been doing it on and off for 18 years. I just haven't "taken the plunge" with the girls yet. But I have looked into it a lot, and I probably will do it. Gotta run before my dh pulls the plug! :) Marilyn

Link to comment
Share on other sites

Marilyn, Hi there. Welcome to the group. My name is and my

husband and I have 5 children. My oldest is 14 and our youngest are

twins that are 21 mos. old. One of my twins, has down syndrome.

I'm homeschooling this next year also, but don't know a whole lot about

it from an experience standpoint as we're just starting with it. I'm

really looking forward to getting to know you better.

Link to comment
Share on other sites

It's a date!!!!

Would love to know how you liked Stepping Stones? We LOVE it there!

Don't know where Tara, or the rest of this family would be had we not

found the school! Now you know why I'm " fighting " my district to keep

her there for her preschool years! And YES, I'll ask Judi B. about your

and !!!! Small world?

Gail from Vernon NJ

>

> Gail--OMG!!! You're 5 minutes away from me twice a week! Both my

> younger girls graduated from Stepping Stones. Just ask anyone there

> about and Conover. They'll know! Anytime you want to meet

> at the diner while your little one's in school, just let me know! Nice

> to meet you! Marilyn

>

Link to comment
Share on other sites

Gail--You come a long way for Stepping Stones! No wonder your district isn't happy! I thought maybe you were from Cedar Grove or Maplewood or something like that, since they're known to be difficult. Judy Bellina definitely knows who the girls are, as do all the teachers and therapists. We were there for several years and we absolutely loved it! We never wanted to leave! Anytime you want to meet at the Livingston Diner around the corner on Northfield, just let me know. Write me off-list later and I'll give you my number. Gotta run and get the girls to school! Marilyn

Link to comment
Share on other sites

--It could show up in bloodwork I think, although I've heard that many times the blood doesn't show it! 's bloodwork also didn't show it--the bloodwork said 100 percent Trisomy 21. But the cheek swab showed 26 percent normal chromosomes! And that was our main reason for finally having her tested--everyone since she was a baby had said she didn't look or act like a "typical" Down's child! I guess they were right. And as stereotyped as it sounds, she is indeed higher functioning than my other two girls with "regular" Down's. Could be Mosaicism, could just be . I don't know. Marilyn

Link to comment
Share on other sites

Hi Marilyn - I'm Judi, mom to Sam & , 5 year

old idential twins w/ds. I'm glad you found us and

look forward to learning more about you and your

family!

Judi

__________________________________________________

Link to comment
Share on other sites

LOL Marilyn - You're not being a " nosybody " !!

Check out their pictures in the photosection at

groups. I think Pam has an album for Hannah and

too. I know there are a few more families

w/identicals here but can't remember who they are

(other than the Webers!). Fraternal twins (where one

does and one doesn't have Ds) are much more common!

People are always amazed because they think they look

identical, but I don't! They have some very subtle

differences in them (for example if you get them

side-by-side, you can see that Sam has a rounder face

and has a longer face). Plus, they have such

completely different personalities - is hyper

and on the go (my motor driven child) and Sam is very

laid back, thoughtful, etc (my observant child).

Most of the time for teachers, daycare, babysitters

etc. I just tell them to lift up their shirt - Sam has

a herniated bellybutton and doesn't (plus

has a scar on his tummy from his malrotation

surgery).

Judi

--- sahmomof8@... wrote:

> Hi Judi! Wow! More identical twins! Sorry to sound

> like a nosybody, but I'm

> just fascinated because I always my whole life

> wanted identical twins! Marilyn

>

>

__________________________________________________

Link to comment
Share on other sites

Hi Marilyn I'm mom to 30 month old twins Annemieke (ds) and Arielle.

We are in the great state of KY, but DH and I are originally from DE. Glad

to have you join our group.

Quick question for everyone - How do you find out what kind of downs your

child has ?? I've had a couple of therapists ask me if Mieke is mosaic

because she is doing so well.

Link to comment
Share on other sites

  • 2 months later...
Guest guest

ok posting a reply to my own post. Don't ya all love people like

me. I kept reading and found the site with your recipes posted. ok

now the question. what brand and flavor of protein do you use when

you make these things I thought protein powder could not be cooked

with. see one question answered another one made. sorry

C

> Hi all I'm new here and really don't spend a lot of time here but

am

> trying. Just read a post that referred to " power bread " was

> wondering if someone makes bread with protein in it? if so could

you

> pass along a recipe? Would be great if you could email me directly

> at ccuda6@y... because I don't know that I will be able to find

> my answer here among all the list. also is there a way to read the

> messages so that once youve read them they don't pop up again, so I

> don't have to sort through them all each time?

>

> Thanks for your help.

>

> Colleen

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...