Sunday, December 27, 2009

We want Christmas and holiday pictures!!

I hope everyone had a great holiday season so far, enjoying lots of good food, special times with family, and miles of smiles from our kids! 

We’d like to see some of your holiday pictures, be it from Thanksgiving or any of the December holidays.  Email them to and we’ll have a special Superstar Parade—Holiday Edition.  It will be fun to see how everyone celebrated and especially how the kids enjoyed the festivities.

Hope you can all join us for the next meeting, January 12, 2010, 6pm, at United Services St. Peters.

Monday, December 7, 2009

MPACT meeting 12/8/09

Our monthly meeting this month is an MPACT training meeting on “Special Education Law” at 6:30 pm at United Services in St. Peters.

In order to be effective when advocating for your child's education, you need to understand the laws that can impact their educational experience. This training will provide an overview of Individuals with Disabilities Education Act, Section 504 of the Rehabilitation Act of 1973, the Family Educational Right to Privacy Act, the Americans with Disabilities Act, and No Child Left Behind.

Thursday, November 19, 2009

Playdates upcoming! Preschool and 5-12

A couple dates coming soon for playgroups…

The preschool group has another 3rd Friday date at Harvester Christian Church in the Family Life Center Gym, Friday, November 20, at 10:30am.  Feel free to bring toys to play with and share.

The 5-12 playgroup will be meeting at Pizza Street on Mid Rivers Mall Drive on Friday, December 4th, at 5:00pm.  See below for more details!

From Karen and Lori:

We have the party room reserved for our group.  A minimum of 15 paying guests is required.  ALL persons entering the restaurant will be expected to purchase the buffet.  You will have to pay for the cost of your child’s meal & yourself at the counter when you walk in.  Let them know you are with the Ryan party in the party room.

Adults $4.99, kids ages 4-9 $2.99 and kids 3 & under free.

The reservation is for 1 hour, 15 minutes.  If there is no party scheduled immediately afterwards, time may be extended. 

Also, you will have to pay for the cost of the tokens for your kids to play in the arcade after pizza.  Siblings are welcome too!  Hope to see you there!

Let us know if you are attending.  Thank you!

Karen at

Lori at

Tuesday, November 17, 2009

Attention Moms!!

Ever feel like this….


Well, you need a break!  It’s time for momsnightout copy and we hope you’re planning to join us!

We’ll be meeting at the Painted Pot in O’Fallon from 7-10pm on Friday, November 20 for a night of margaritas, food, and art. The Painted Pot is near Shop N Save at Hwy K and O’Fallon Road. The St. Charles Group will pay your $10 fee to get you in you only have to pay for is whatever art project you want to make. Bringing a dish and more drinks are also an option, so please feel free to do so if you want.

If you have any questions, please contact Adrienne at

We hope to see you there!!

Monday, November 16, 2009

An Evening at Leaps and Bounds

Instead of our regular meeting this past week, we met at Leaps and Bounds in St. Peters for a little bit of a playtime with some sensory experiences thrown in.  We had a great turnout and it seemed that everyone had a good time!

Here’s a few pictures from the evening.

Wednesday, October 14, 2009

Walk in the Park pictures

We had a great time at Walk in the Park, even though it was a bit chilly that day! 

If you were there and have pictures, please send them to so we can share them with the group!! 

Monday, October 5, 2009

5-12 Playgroup for October

From Karen and Lori:

Our next playgroup will be at Zachary's Playground at 1 PM on October 24.  Since it is around lunchtime please feel free to bring a snack or lunch for you and your child/family.  If anyone needs directions please let Karen or Lori know. 

We loved how many people came to our first group and we hope to have another great turnout again.  Please pass the word on to anyone else you know who has a child with DS in the age range of 5-12.

Thanks!  Don't forget to let one of us know if you can make it or not!!



October weekend preschool playgroup

The weekend preschool playgroup that was planned for this coming Saturday, 10/10, has been moved to 10/17 at 10 am.   Emily will be hosting at her house and graciously providing lunch!  Please leave a comment here with contact information or email if you’d like further information with her address and directions or if you have any questions.  We had 26 at our last weekend playgroup, and we hope to have even more this time!  Come out and join us!

Thursday, October 1, 2009

Walk in the Park!!


The 2009 Walk in the Park event is this coming Saturday at Busch Stadium.  I know several of our families are planning to go, and it looks like it’s going to be a great fall day for baseball! 

Are you going?!? I am, and I’ll look for you!

Monday, September 28, 2009

October Meeting--Financial issues relating to special needs

Our next meeting will be on Tuesday, October 13, at 6pm at United Service in St. Peters.

Joanne with Prudential will be talking to us about some financial tips and issues related to children with special needs and how to prepare appropriately. It will be very helpful for everyone!! Please plan to be there!

Sunday, September 27, 2009

Weekend Playgroup: September

We had a GREAT turnout for our first weekend preschool playgroup on 9/12.  Joanna J. and her family hosted the whole lot of us and everyone had a fun time.

There were 9 families including 9 little ones with DS, 4 siblings, 9 moms and 4 dads, for a total of 26 people in all.

Here’s a few pics of the good times we shared.

Our attempt at getting the kids together for a group picture in the beginning.

The dads (who we were so glad to have come too!) and their kids.   Bill and Matthew, Todd and Blake, Muncher and Braska (and sleeping Kinlee), and Jim and Roy.

There was some great conversation and sharing about what’s worked for us or what we need to know about or what we’ve learned so far in our journey.

One of our newer playmates, Roy, and his mom Julie.

Shane showed off his ball skills.

Zoe was a fan of the camera and liked to have her picture taken.

Our youngest little friend in attendance, Illyanna.

We want to thank Joanna again for hosting!  Everyone had such a nice time and seemed to really enjoy getting to visit and share our stories and victories!

Our next group will be October 10, and details will follow very soon.  Mark your calendars!

Monday, September 21, 2009

Great article: Seen through loving eyes

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Yesterday, she had another winner, called Seen Through Loving Eyes.   What do you think? Have you had similar experience? Share your thoughts in the comments.


My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.

Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year.

“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.

It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.

My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.

But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.

He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.

This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?

Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.

All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.

In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.

“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’

Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.

Divorce and Down syndrome

Jeffrey Pomranka, the COO of the DSAGSL, wrote a letter to the editor of the Post-Dispatch that was recently published.  It was related to the popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols.  The fan had a son with DS.  Jeff’s letter is well worth the read.  Click here for the letter and Jeff’s explanation.

Wednesday, September 16, 2009

Friday Preschool Playdate

It’s short notice, but we have an opportunity to use the gym at the family life center at Harvester Christian Church this Friday, 9/18/09.  We’ll be there at 10:30 am, and the kids can bring a riding toy or something if they’d like.  There will be lots of room to play and run and crawl and roll or just sit and watch!  It is a carpeted gym, also.

For more details about the location within the HCC campus, please leave a comment here or drop an email to  Hope you can make it!

(Pictures from our weekend playdate this last week will be up soon!)

Sunday, September 6, 2009

Preschool playgroup: Fall kickoff

Wednesday, 8/26, the first preschool playdate of the school year was at Mid Rivers Mall.  We met early and had the whole play area to ourselves for a while.  The kids LOVED that part!

In attendance this time were Jack, Braska, and Illyanna, along with Braska’s little sister Kinlee and Illyanna’s big brother Hudson.  The kids AND the moms had a very enjoyable time!

Jack, Hudson, Braska. (Remember, you can always click on a picture to see it bigger.)

Here’s our newest playgroup member, the adorable Illyanna.

Jack and Braska sneaking a little hug.

Kinlee had her own little corner to play in.

Our next preschool playgroup is scheduled for Saturday, September 12 at 10:30am.  If you would like more details, please email  There will also be another weekday playdate later in September, more details to follow.  We hope you can join us next time!

Thursday, September 3, 2009

New playdates for ages 5-12

Karen R. and Lori H. have put together a new playgroup for girls and boys ages 5-12.  YAY!!!

Here’s the announcement from them about the details.

Meeting at The Painted Zebra on Mid Rivers Mall Drive on Saturday, September 12, from 11 am to 1 pm.

The cost is $5.00 per person to paint, plus the cost of the item you are painting.  We need a group of 6 or more to get the $5.00 per person cost.  We are allowed to bring snacks, cake, or drinks for our kids.

RSVP to Karen R. at or Lori H. at .

Please let us know if you are coming and what kind of snack you are bringing.  We can all share. Thanks!!!

Thursday, August 27, 2009

Gotta love Albert!

Check out this press release about the new clinic for ADULTS with Down syndrome soon to be opened at St. Luke’s Hospital in Chesterfield

I’ve known about this project for a while since my sister works for St. Luke’s, but it’s new news that Albert Pujols has signed on in cooperation with this new clinic.  That is exciting!


Many of you may know that Albert has a daughter with DS, and he has a foundation here in the St. Louis area, the Pujols Family Foundation, that does alot of things for people with DS and their families. They are very popular among the DS community in these parts!

How exciting is it to have an ADULT clinic designated for people with DS?!?  So many of us cherish our DS Centers for our kids, and it’s great to see a need noticed to focus on their health after they’ve “aged out” of the pediatric practice system.  Yay St. Luke’s!  Yay Albert!  Go Cards!

Monday, August 24, 2009

Two Playdates Set!

Wednesday, August 26, we’ll be meeting at Mid Rivers Mall at the play area near Borders.  We’ll meet at 9:30 am, before most stores open, so it’s nice and quiet in there.  But not for long when our kiddos arrive!!

And Saturday, September 12, at 10:30 am we’ll be meeting at a home of one of our families in St. Charles.  We’ll not publish info here for privacy sake, but if you can make it to this one, please email and we’ll be sure you have directions!  So far, this seems to be a popular date, so we hope to have a great group that day!

We’ll be setting up another weekday playdate in September, so watch for that info soon.

Make it a great day out there! :)

Thursday, August 20, 2009

Preschool playgroup!!

We’ll be scheduling one or two dates for our preschool playgroup in the next few days.  If you’re interested in getting together, please leave a comment here or email so that we can be sure to let you know in a timely manner when we get these dates.

We sometimes meet at a house, or at the mall play area, or at a park.  But the kids ALWAYS have fun!  And I think the parents do too! We’ve got quite a few in this age range now, so we’d love to have our kids getting to know each other and enjoying new play buddies!

There is also a preschool playgroup that meets at the Kirkwood Early Childhood Center Discovery Room (100 N. Sappinton Rd, 63122) on these upcoming dates Monday September 14th 9:30-11:00, Friday October 9th 4:30-6:00 (afternoon time), and Friday November 13th from 9:30-11:00.  The contact for that group is Julie Missey and you can email her at or call her at 314-909-9895.  Those might be an opportunity as well for your little ones to have a fun time!

For those of you with kids older than this, it would be great to set up another kind of play event too, maybe a park or something as well, so don’t hesitate to comment if you’d like to get that together.  We can never go wrong with too many playtimes, right?!?

Saturday, August 15, 2009

StC Superstar Parade #4

Here’s a couple more handsome little guys to show off!  It’s like toddler GQ!

Gabriel is 14 months old.

Anthony is 22 months old.

Let’s have some pics! Send them in so we can feature your superstar!!  If you know kiddos that you haven’t yet seen here, let their parents know that we’d love to get the chance to show them off.

Thursday, August 6, 2009

StC Superstar Parade #3

Here’s a couple of our adorable 2-year-old boys… Stephen, showing off his superstar smile, and Blake, taking his new birthday ride for a spin.  Doesn’t our future look SO bright!!

If you haven’t sent pictures yet, please do!!  And if you get new great shots you want to show off, send them on over to .

Monday, August 3, 2009

Webmaster revealed and blog list is up!

Ok, so maybe "revealed" is a bit too dramatic! As a means of explanation, let me say that the webmaster term is just a generic word to mean the person that's handling and managing the website, or in this case, the blog. My name is Randa-Kay, RK to many, and I have a 2 1/2-year-old daughter named Braska who has Down syndrome. We've been involved with the St. Charles group of the DSAGSL since returning to St. Charles in May of 2008, moving back here from Champaign, IL. So when you email the with pictures or content ideas or when you make a comment here on the blog, it's coming to me. Now you know!

Our fearless leader, Adrienne, is also right along side me in this little venture, of course!

We've added the beginnings of a Blogroll, a list of family blogs done by the families in our group. The link list is in the right margin, so be sure to check out what's going on with these families as another way of getting to know each other.

So far, the feedback we're getting by email and via the polls in the margin here on the blog tells us that the families in our group would really like to connect more with each other, getting to know the children and parents more than what generally happens at meetings, especially since so many aren't able to regularly attend the meetings. This is what we're working toward, and if there are other things we can provide or help with, PLEASE let us know!

Some things in the works for our group include fun family outings, great relevant topics for the meetings, and playgroup opportunities for our younger kids. Keep watching for more details!

Sunday, August 2, 2009

StC Superstar Parade #2

We’re getting some great pictures!  Please keep sending them.  We’ll be putting together a great montage soon.

Miss Hannah (6) is a little beauty in her lovely hat.

Russell (11) and two of his biggest fans, his sisters!

Parker (3) loves a good book, especially a DOG book!

And here’s Patrick (6) the next pro on the links.

Thursday, July 30, 2009

New features added: Chat box, links, and polls

As we are still in the development stage of this blog, things are being added each day.  The latest items are a chatbox in the margin to the right, a list of links to other discussion forums that might be of interest, and there are a couple of polls in the right margin, as well, that will help us create something that will really be useful for you!

The ChatBox is available to anyone, and it will tell you if others are online.  There is no need to sign up, just type in whatever name you would like to use where it assigns you guest number.  If you click “show all” at the top of the Chatbox, it will show you who else is online and ready to chat.  This is a great place to meet up with others and talk about…well, anything!  We may set up specific times to all meet and chat.  Again, we’re looking for ways to connect with each other and get to know our families.

There are a few links to discussion forums, some of which are favorites of a few people in our StC group, so if you check them out, you might see names you know!  These forums are a great way to learn and be encouraged by other parents of kids with DS.  More links to a variety of things will be added as we move forward.

And lastly, there are a couple of polls in the margin that will really help us build this blog to be what the group wants and needs it to be.  We’ve had GREAT feedback so far, and we want to continue to listen to what you have to say! So take a minute and vote in the polls!

More features and gadgets to come soon, along with alot of great resources for our area.  Stay tuned!

Wednesday, July 29, 2009

StC Superstar Parade #1

Here’s the first few pics we’ve received… if you would like to have your superstar included, send in some pics!! We wanna see them!

Here’s Shane (4) at the Buddy Walk, showing off his firefighting skills!

Matthew (almost 2!) is drawing his mom a very cool picture.

Jackson (2 1/2) is saying “Hi!” during a short pause in the action at the park playdate on Friday night.

Flying high and loving it! Braska (2 1/2) is all smiles at the park on Friday.

And a group shot of a meet-up earlier this month…Braska and Matthew hit it off, as did their parents!

Send in your pics!! And feel free to share a brag about what they’re doing, too!

Do you have a family blog or website?

We'll be compiling a list of family blogs or websites to put links here (called a blogroll) on the group blog, for those who would like to be included. This is another way that we can connect with each other, get to know other families in our groups, and share helpful tips with each other when a need arises.

Leave a comment on this post with your blog or website address if you'd like to be included in the link list.

(And if you are interested in starting a free family blog, email the webmaster through the link in the right margin and we'll walk you through it. It's super easy and a great way to connect with friends and family who might not get to see you as often as they would like.)

Have a great day!

Tuesday, July 28, 2009

Keep the pictures coming!!

We've already received pictures from a few of you, so be sure to send us a couple shots of your kiddo! Check back in a few days for the beginning of our Superstar Parade!

Friday Blast 7/24/09

Last week's Friday Blast from the DSAGSL came today. Here's a link in case you haven't seen it. Some great opportunities there, including the Walk in the Park and a chance to go as a VIP to Rams training camp!!

Click here.

Sunday, July 19, 2009

Friday Blast 07/17/09

Here's a link to this week's Friday Blast. It's a great way to see what's going on with the DSAGSL currently, and it has some interesting links to info, also.

Check it out!

Saturday, July 18, 2009

Welcome to the new blog!

We hope you'll find this place helpful for info on upcoming meetings, resources, and a place to connect with other families in St. Charles County. If you have ideas on content or pictures you'd like to share, please email the webmaster.

This can be a place to share accomplishments of what your kids are doing, things happening that you'd like to let others know about, ideas for meetings or social get-togethers, or just ask others about resources in our area that they have found helpful. We'd love to hear your thoughts.

We're glad you're here!!!