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!!!