Down Syndrome St. Charles, MO

Ready for lots of fun???

2011-08-26T05:21:00.001-07:00

It’s time for us to get going again! We’ve got some GREAT things planned for this coming school year.

September 10 is Parents’ Night Out for good fellowship, food, and fun! We’ll have poker for those who like to be a little competitive (no $$ needed!) and who knows what else might crop up! Come as a couple, come with a friend, or come by yourself. We’ll be sure everyone has a great time! Please RSVP to Adrienne asap. mommyto3oneds@yahoo.com

October 16 is our Family Picnic at the City Centre Park and Pavillion in St. Peters. More details soon, but plan to bring the whole family! RSVP info will be around soon on this one.

PLAYDATES!!! We have been generously given the opportunity to have several playdates scheduled at the Calvary Church indoor playground. It is a SUPER place for kids from little tiny tots to the bigger kids who want to run, climb, and jump in their area! Dates will be available soon!

And there will be more family events to share about soon. Along with meetings that present topics that will be helpful as well.

So get ready! It’s going to be a great year with StC!

Mom’s Night Out in May!!

2011-04-15T16:44:00.001-07:00

See details below… and please RSVP!

It’s going to be a GREAT night!
(Click the image to make it larger.)

World Down Syndrome Day 2011

2011-03-21T00:03:00.000-07:00

3-21-2011
For 3 copies of the 21st chromosome, unique to Down syndrome.

World Down Syndrome Day.

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone.

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her. Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

Meeting tomorrow—Dance Party!

2011-03-19T20:34:00.001-07:00

March 20 at 4pm at Family Therapy Solutions.

It’s a Dance Day Party!! Get your groove on!!

Important meeting this Sunday!

2011-02-23T12:03:00.001-08:00

If you haven’t RSVP’d for our meeting this Sunday afternoon, please do so right away. It’s going to be a great one.

The Met Life Center for Special Needs Planning will be presenting a FREE seminar on Feb 27 at 4pm at Family Therapy Solutions. Family Therapy is located @ 2120 Bryan Valley Commercial Drive (Bryan Rd in center where Radical Resale is) in O Fallon, MO.

Family Therapy Solutions

FOOD WILL BE PROVIDED.

This will focus on two main elements.

~~Why having a special needs trust is important to ensure that your child will receive the appropriate benefits from all available resources as they move through the childhood and adult years.

~~How the process of setting up a special needs trust works.

This presentation will be given by J. Todd Gentry, from the Met Life Center for Special Needs Planning in Chesterfield. He also serves on the DSAGSL board of directors. The meeting will be casual with plenty of interaction for questions and answers, as well as information on the legal side of the trust.

We have several families who have attended this seminar before and have spoken highly of it. Some are currently in process of setting up their trusts through Todd and the Met Life office.

This is VERY valuable information, so we highly encourage you to make a point to come. It is important to have all the information about how to best plan for your child's future care.

We hope to see you there!!

Superstar Parade: Bumblebee, bug, and bones

2010-11-10T21:40:00.000-08:00

Braska was a friendly bumblebee, going to Trunk or Treat at her PaPaw's church.

Jack borrowed Braska's bumblebee "hat" for a while.

Jack, AKA Mr. Bones, and Kinlee the Ladybug were excited to be going to the Fall Festival!

Don't forget to send us your pictures of birthdays, holiday celebrations, or any other events that you'd like to share! DownSyndromeStC@gmail.com

Superstar Parade: Toy Story Halloween

2010-11-02T14:08:00.001-07:00

(Don’t forget, if you haven’t completed the survey, please do! Click here.)

We LOVE to get pictures to share, and this is a GREAT time to send us your Halloween pictures to show off your kiddos!

Here’s Shane (Woody), Megan (Jessie), and William (Buzz Lightyear) showing some very marvelous smiles!

Send your Halloween pics to DownSyndromeStC@gmail.com and we’ll share them with the group!

Your chance to help us improve!

2010-10-29T13:05:00.001-07:00

Hopefully you’ve all received the email from Adrienne with the link to the survey that we have put together to try to learn what our StC group members are looking for in group events, resources, and activities.

Please take the time to complete the survey as soon as you can. It will only take about 2-3 minutes and it will help us plan the future of the group in a way that will include and provide interesting offerings for the most people possible.

Click here to go to the online survey. It is anonymous, so please let us know how we are doing and how we can improve!

Happy Birthday, Anthony!!

2010-10-23T06:41:00.001-07:00

Our friend Anthony turned 3 last Sunday, October 17! Woo Hoo!

He had a super cool Buzz Lightyear party at the park and clearly had lots of fun. Look at those smiles!!

We’re glad you had a great birthday, Anthony!!

(We want to celebrate with YOU, too, so send us your kids’ birthday pictures to share with the group! )

Pumpkin Patch this Sunday

2010-10-22T21:41:00.001-07:00

This month’s meeting is being taken on the road! We’ll be meeting at Eagle’s Fork Pumpkin Patch in Moscow Mills at 4pm on Sunday, October 24.

Bring the whole family! This is a great opportunity for fall family photos and great memories. Join us!!

Eagle's Fork
65 Eagle Fork Lane
Moscow Mills, MO 63362
(636) 366-9825

They are located off of Hwy 40 and John Creech Road. If you are headed north on 40 you turn left on John Creech Rd and then an immediate right onto Eagle Fork Lane. It's right there up on the right hand side and visible from Hwy 40.

We did this a few years ago as a group and had a decent turn out! You don't have to pay to get in, only for pumpkins you buy, snacks if you choose and there are activities you can do to pay for but those are optional. We can just hang out and let the kids run around or even do a hay ride! If you plan on going, email Adrienne, (mommyto3oneds@yahoo.com) so she can get some sort of count of who is coming to keep an eye on families that show up. Thanks!

p.s. If it's raining that day, stay home! :)

Congratulations, Abby!!!!

2010-10-22T21:32:00.001-07:00

Abby won her first Special Olympics medal on Sunday, October 17. Hooray for Abby!!

(Please send your celebrations, birthdays, and announcements to DownSyndromeStC@gmail.com )

Mom’s Night Out 2010! Coming soon!

2010-10-11T04:10:00.000-07:00

Mark your calendars now for November 12 from 6 to 8 pm. It’s time for Mom’s Night Out at the Painted Pot again! The StC Community Group will pay for your fee for the evening, you only pay for whatever pottery you want to work on.

This is a really fun night of laughs, good food, drinks, and lots of great friends. We’ll be meeting at the Painted Pot, choosing items to decorate, and enjoying some moms-only time. Last year this was a HUGE hit, and we are still talking about some of the super cool things that were made.

This is a GREAT opportunity to do some very special customized Christmas gifts, so be sure to plan to join us. Bring a yummy appetizer or dessert to share, too.

The BONUS is that Family Therapy Solutions will be having a "Parent's Night Out" Respite night that night so if you need a sitter and/or respite provider for ALL your children, this will be avail through them. MORE INFO TO COME SOON!

September group meeting

2010-10-09T13:35:00.001-07:00

Our September group meeting was lots of fun, especially for our younger attendees… the kids! We had 8 families and about 30 adults and children. It was a nice cool fall evening, perfect for sliding and swinging, and plenty of visiting between the parents.

We were most wonderfully pleased to meet sweet little Leah, one of our newest group members. She was a hit with all ages, and she was happy to oblige with tons of cuteness. Welcome Leah and family!!

We practically had the park to ourselves, so we took advantage of a “group swing” time!

Our next meeting will be October 24 at 4pm at Family Therapy Solutions. We hope to see a really good crowd that night, too! Come and join us!

Preschool playgroup next week!

2010-10-07T12:58:00.001-07:00

Our next preschool playgroup (weekday) is next Friday, October 15, at City Centre Park in St. Peters at 10 am. This has been a great place for kids of all ages the last few times we’ve met there. We hope for beautiful fall weather!

All birth-through-preschool kids, parents, and siblings are welcome! We hope to see you there! It’s a really great opportunity to get to know and visit with other parents in a relaxed environment. And sometimes we go to lunch afterward, too!

We are also trying to get weekend dates on the schedule for the preschool group. If you have ideas of a place that would work, please email DownSyndromeStC@gmail.com. We’re working on a couple of dates for October and November weekends. Details as soon as they’re available.

September preschool playgroup fun

2010-10-06T17:39:00.001-07:00

We had a good time at the park last month!

Anthony showed off his driving skills.

Jack explored the area next to the playground, showing off his well-controlled high step!

Braska and Kinlee love the swings!

We worked up an appetite, so we went to get lunch afterwards. Chicken fingers and french fries were very popular!

More dates soon! Stay tuned! If you would like to host a playgroup date, please let us know!

Preschool (or anyone!) park playdate

2010-09-16T12:36:00.001-07:00

Since the weather is super nice—finally!—we’re doing an impromptu playgroup at the park on Friday, September 17, 2010 at City Centre Park on Mexico Road in St. Peters. We’ll meet at 10 am and just have time to play and visit and enjoy the gorgeous sunshine with nice temps! This is an adaptive park with baby swings, toddler and older-child areas, and benches for chatting moms and dads.

Anyone is welcome, though we understand that many are in school or working. Especially for those that might have preschoolers who would like some outside time, please join us!

Email DownSyndromeStC@gmail.com if you have any questions.

See you there!

First Fall Meeting Tonight!!

2010-08-29T10:22:00.000-07:00

We will be kicking off the season with our first monthly meeting tonight at 4pm at Family Therapy Solutions in O'Fallon. You may bring your child if you need to, but there will not be childcare specifically. Feel free to bring snacks or a brown bag supper if you would like. It will be a casual environment. We'd love to see you!!

IMPORTANT: Do not bring anything with PEANUTS or NUTS due to allergy issues. Thank you.

Meetings from this point forward will be on the 4th Sunday afternoon of each month at 4pm at the same location, Family Therapy Solutions.

Email DownSyndromeStC@gmail.com if you have any questions, or you may call or text 636-395-0110.

Sign language night

2010-07-28T07:58:00.001-07:00

Family Therapy Solutions hosted an evening of information and beginning signs last night for families, and there was a good turnout! There were a few families from our group represented, and it was great to get to visit with others and make new acquaintances.

Here’s a list of online resources for signing that was handed out last night.

http://www.dawnsignpress.com
http://www.signingtime.com
http://www.babysigningtime.com
http://www.handsofexpression.com
http://www.lifeprint.com/asl101/pages-layout/concepts.htm
http://www.babysigns.com
http://www.signingbaby.com
http://www.toddlerinterpreting.com
http://www.babies-and-sign-language.com
http://www.simplysignin.com

Here’s a link to two of the kids from our StC group showing some of their signs last year. Click here.

If you have more questions about signing with your child, please don’t hesitate to leave a comment or email DownSyndromeStC@gmail.com and we can share experiences with our local families and connect you to resources if you’d like.

Thanks to the gang at Family Therapy Solutions for hosting this great event!!

Pictures from Zachary’s Playground

2010-05-17T12:47:00.000-07:00

We received pictures from the school-age playgroup at Zachary’s Playground in April. Clearly, fun was had by ALL!

Don’t Miss This! Family potluck!!

2010-05-15T07:39:00.001-07:00

If you haven’t RSVP’d yet for our Family PotLuck, make sure to do it right now! We are SO looking forward to this afternoon with all our families!

There will be entertainment for the kids with a clown and balloon animals and face painting, too! And there will plenty of space for the children to play and get to know each other.

We’re really excited about the opportunity to use the Family Therapy Solutions space, and we’re very thankful for their generosity toward our group. A safe place to bring your kids and visit with other families.

These events are great for connecting with other parents, and that is the #1 request we get from new and “old” families in the area. So make sure to plan for this afternoon event and come out to join us!

New pictures for background please!

2010-03-25T07:56:00.001-07:00

It’s time to freshen things up! And this weekend is the right time, since the Pujols Family Foundation is hosting a Picture Day full of scrapbooking on Saturday! I’ll be doing digital scrapbooking alongside all of the moms who do it the “real way.” Ha!

(There may still be space available, Moms, if you’re interested! It’s going to be great! Call Jen at 314-878-2105 if you’re interested.)

So if you’d like to have your child and family highlighted in the blog background, send one or two pictures to DownSyndromeStC@gmail.com. Be sure to include the child’s name and age, please. We’ll use as many as we can fit in there, and the rest we’ll use in a new edition of StC SuperStar Parade!

We’d love to see the older bunch, the newborns, and everyone in the middle! Be watching for the new background early next week.

March Preschool Playgroup Pics

2010-03-20T18:53:00.001-07:00

Today we had a great meeting of our preschool playgroup. Joanna, Julianna, and Taylor were great hosts! We had 15 in attendance, 5 families represented: 5 moms, 5 kiddos, and 5 siblings.

Little Adam was snoozing when he arrived, so Braska and Jack decided they’d check him out without waking him…one on each side. Too cute!

Taylor was happy to share his toys.

When Adam had enough nap, he was all about finding fun stuff to do!

Anthony checked out the bunny with dancing chicks.

And Joanna had yummy pizzas and mac ‘n cheese for lunch, a hit with everyone!

Thanks, Joanna, for hosting!!

Our next playgroup meeting will be at Kristin’s house on April 24 at 10 am. RSVP for the address to DownSyndromeStC@gmail.com Hope you can join us!

Fun at the Funfest!

2010-03-14T17:42:00.001-07:00

The funfest last month was a GREAT event! Thanks to Hope High School for hosting and doing a wonderful job! There was a really great turnout of families who enjoyed the day. We weren’t able to catch pictures of all the kids there, but we did get a few to show some of the cool things the kids got to do.

And here's a little movie clip just for fun...look at those girls go!

Pizza Street Playdate

2010-03-10T06:21:00.001-08:00

The 5-12 playgroup invited our whole group to join them at Pizza Street in December. They had a pretty good turnout, and as you can see below, everyone had a great time!!

Upcoming monthly meetings: March and April

2010-03-06T10:40:00.000-08:00

This coming Tuesday, March 9, is our monthly group meeting at 6:30 pm. We’ll be changing things up a little bit and meeting at the St. Louis Bread Company near Mid Rivers Mall in St. Peters. (Next to Pier 1)

We would love to see you, catch up on what’s great, what’s frustrating, or how we can help you, because that’s what we are all here for! To share the good and the tough and encourage whenever we can. If you’ve never come to a meeting, this would be a GREAT time to meet some new friends, catch up with an old one or two, and relax with others who are walking this journey with you. Tuesday, 6pm, be there!

For our April meeting, on Tuesday the 13th at 6pm, our group and United Services are coming together to offer a resource evening!

(Click on the image above to see it larger.)

“We want to invite you to participate in a resource fair. United Services is working in conjunction with the St. Charles Down Syndrome Community Group which meets monthly at United Services. We will have information on a variety of community resources that provide therapy, family support, case management, respite, recreation opportunities, advocacy, and more.”

So mark these dates down right now, and make a point to take advantage of these times to connect with others in the group. Everyone has something to contribute that will help someone else!

Playgroup dates for preschool group

2010-03-05T19:19:00.001-08:00

We finally have a couple of preschool playdates set! Yay!!!

Saturday, March 20, we will be meeting in the morning at Joann’s house, where we met a few months ago. She has graciously offered her home again, and we’re excited to get together!

Then in April, on Saturday the 24th, we’ll be meeting at Kristin’s house in the morning as well. I’m sure Shane and Megan will be wonderful little junior hosts!

If you plant to attend and/or want details of times and address, please email DownSyndromeStC@gmail.com . We’d like to have a general idea of how many to expect for each date. (We want to respect privacy, so we don’t share too many personal details like last names and addresses in this public realm.)

We hope you can make it! It will be FUN!

PS… Be watching for more details about a very exciting weekend May event for ALL our StC families, together, having a great time!

Don’t Miss the FunFest!

2010-02-10T20:44:00.001-08:00

The Hope High School Leadership Class and Fort Zumwalt Early Childhood Education is hosting a

FunFest

For the Down Syndrome Association of Greater St. Louis and their St. Charles Community Group.

Come enjoy…
~Face Painting
~Games and Activities
~Pictures with Ruffy the Rascal
~Prizes
~………and much more!

Where?
Hope High School, 307 West Pitman, O’Fallon, MO 63366

When?
Saturday, February 27, 2010, 10 am to 12 noon.

Please note: Event is limited to the first 50 children. RSVP requested.
(Siblings are welcome.)

RSVP—Call 636-281-9815 (Fort Zumwalt Early Childhood Education) or 636-751-8388. Or you can email tratcliff@fz.k12.mo.us or mommyof3oneds@yahoo.com .

Be sure to get spaces reserved for your children right away! Let’s have a great turnout to thank them for this great event for our kids!

Superstar Parade—Holiday Edition!!

2010-01-21T05:53:00.001-08:00

At long last, here are the pictures we received of our holiday fun!!

Anthony and his brother Braden

___________________________________

Gwenith and her sister Jordyn

Illyanna

Shane, sister Megan, and family

______________________________
Regina (a special Parade guest!)

________________________________

Braska, her sister Kinlee, and a cameo by Jack!

__________________________________
Jackson and his brother Tyler

If you have holiday pictures that you’d like to share, please send them to DownSyndromeStC@gmail.com and we’ll have part 2 of our Holiday Superstar Parade!

Email problem resolved! Apologies!!

2010-01-20T14:04:00.001-08:00

We had an unknown email problem the last several weeks, and it has just been found and corrected! If you sent pictures or questions, please know they will be posted and/or answered this week! So sorry for the confusion!

Also, preschool playgroup dates are being set for this semester. If you did not get the email today regarding this, please let me know so you can be added to the preschool list.

Have a great week!!

We want Christmas and holiday pictures!!

2009-12-27T17:18:00.001-08:00

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 DownSyndromeStC@gmail.com 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.

MPACT meeting 12/8/09

2009-12-07T20:30:00.001-08:00

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.

Playdates upcoming! Preschool and 5-12

2009-11-19T08:34:00.001-08:00

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 tkaaryan@sbcglobal.net

Lori at laholbrook28@yahoo.com

Attention Moms!!

2009-11-17T06:11:00.001-08:00

Ever feel like this….

Well, you need a break! It’s time for 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 mommyof3oneds@yahoo.com.

We hope to see you there!!

An Evening at Leaps and Bounds

2009-11-16T14:28:00.001-08:00

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.

Walk in the Park pictures

2009-10-14T15:34:00.001-07:00

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 DownSyndromeStC@gmail.com so we can share them with the group!!

5-12 Playgroup for October

2009-10-05T14:20:00.001-07:00

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!!

Lori: laholbrook28@yahoo.com

Karen: tkaaryan@sbcglobal.net

October weekend preschool playgroup

2009-10-05T14:05:00.001-07:00

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 DownSyndromeStC@gmail.com 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!

Walk in the Park!!

2009-10-01T13:58:00.001-07:00

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!

October Meeting--Financial issues relating to special needs

2009-09-28T16:51:00.000-07:00

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!

Weekend Playgroup: September

2009-09-27T16:45:00.001-07:00

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!

Great article: Seen through loving eyes

2009-09-21T14:37:00.001-07:00

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

2009-09-21T13:58:00.001-07:00

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.

Friday Preschool Playdate

2009-09-16T21:03:00.001-07:00

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 DownSyndromeStC@gmail.com. Hope you can make it!

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

Preschool playgroup: Fall kickoff

2009-09-06T20:28:00.001-07:00

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 DownSyndromeStC@gmail.com. There will also be another weekday playdate later in September, more details to follow. We hope you can join us next time!

New playdates for ages 5-12

2009-09-03T20:14:00.001-07:00

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 tkaaryan@sbcglobal.net or Lori H. at laholbrook28@yahoo.com .

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

Gotta love Albert!

2009-08-27T11:54:00.001-07:00

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!

Two Playdates Set!

2009-08-24T11:06:00.001-07:00

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 DownSyndromeStC@gmail.com 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! :)

Preschool playgroup!!

2009-08-20T09:16:00.001-07:00

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 DownSyndromeStC@gmail.com 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 jsmissey@sbcglobal.net 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?!?

StC Superstar Parade #4

2009-08-15T09:40:00.001-07:00

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.

StC Superstar Parade #3

2009-08-06T20:21:00.001-07:00

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 DownSyndromeStC@gmail.com .

Webmaster revealed and blog list is up!

2009-08-03T09:26:00.000-07:00

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 DownSyndromeStC@gmail.com 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!

StC Superstar Parade #2

2009-08-02T17:50:00.001-07:00

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.

New features added: Chat box, links, and polls

2009-07-30T10:53:00.000-07:00

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!

StC Superstar Parade #1

2009-07-29T10:20:00.000-07:00

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?

2009-07-29T06:22:00.001-07:00

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!

Keep the pictures coming!!

2009-07-28T20:56:00.000-07:00

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

2009-07-28T19:22:00.000-07:00

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.

Friday Blast 07/17/09

2009-07-19T06:31:00.000-07:00

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!

Welcome to the new blog!

2009-07-18T12:54:00.001-07:00

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!!!