Bridging a community

Samone is the leader and organizer of the newest community group in the area, the North County Community Group. She took time out of her schedule to tell us about her story with her son, Mykell, and why starting this group has been so important to her.

Hello! My name is Samone Yancy and I am honored to be the new North County Community Group leader. My husband and I have two boys together who are 8 and 6, and I have two step children who are 19 and 17. Mykell is our 6 year old who has Down syndrome.

I never thought in a million years that I would be a mother of a child with ANY disability. I was 28 when we became pregnant with Mykell, and at 4 months we were told that there was a possibility that Mykell would have Trisomy 21. This was devastating news for my husband and me. Besides the ultrasound testing we decided not to do any further testing, but we prayed about it and made a decision that we will love our baby no matter what. Months later on our EXACT due date and on his grandmother’s birthday, July 15th,  Mykell was born. I remember his features were very mild and my first thought was “THANK GOD he does not have it!” (And at this point it was not confirmed by the Doctor) But after the first day I remember looking at him and I said to myself “My baby has down syndrome”.  I have to be honest and admit that the first few months were hard, and while I did love my baby, I was consumed with thinking about his future and wondering how people would treat him. This made me cry, cry and cry some more.  Thankfully, by the grace God and the support of my husband, I got stronger and focused on loving my baby and PRAYING for his future.

When Mykell was first born as I looked into support groups in my area, I noticed they were not consistent.  One of my goals is to have a consistent support group in the North County.  Another goal is to bring awareness to the community, as well as support and education to families and friends of individuals with Down syndrome. I am also a woman of great faith, I am an encourager and I plan to personally be there for the moms as they go through the different phases of having a child with Down syndrome.  My last goal is to bond, plan fun activities and participate in DSAGSL events together. I already feel that this will be an AMAZING group and I am extremely excited about it.

The first North County Community Group meeting will be April 11 at 6:30pm at Victory Resource Center in Ferguson, MO. For more information contact Samone at 214.222.7047 or vrcorg@ymail.com.

More than a photo – capturing special family moments

Just yesterday we opened up sign ups for photo sessions to be featured in our 2014 calendar. Calendar photo sessions are now a DSAGSL tradition, with the help of many talented and generous photographers. This week we invited one of those photographers, Nichole Olea of Solea Photography, to write for us about her many experiences taking photos of kids and adults with Down syndrome. What she gave us far exceeded our expectations and will definitely touch your heart.

Wow, I was so honored when the Down Syndrome Association of Greater St. Louis asked me to be a guest blogger!  Of course I jumped at the opportunity to share how much I love working with this organization and why.

When I tell people about the DSAGSL and how I’m involved with them, I always get asked the same two questions – (1) how did you get involved and (2) what makes it so important to you?  So I thought this was a great time to answer those questions…

I was introduced to the DSAGSL about 5 years ago by a family member that knew someone on the board; I was told they are always looking for photographers to donate services.  Shortly after that I met about an idea to offer free family portraits to the families of children with Down syndrome and then use the photos for a calendar that they have been putting together for the past few years.  It was confided in me that many parents are a little hesitant to take their kids with Down syndrome to get a professional portrait because it’s not always an easy process and can be very upsetting.  This has been something that several other parents have confided in me throughout the years, as well.  I thought, “How sad that these families haven’t had a fun and enjoyable experience while capturing their family memories”.  I knew that I could offer a service to them and I couldn’t wait to get started!

The first year was a huge success, but it wasn’t until the second year that I realized that this is something that I’m extremely passionate about.  There is one photo session in particular that is responsible for opening my eyes and touching my heart:

I had a mid-afternoon session scheduled with a sweet 2-year-old little girl named Lydia during one of those unbearably hot summer days – you know the ones!  It goes without saying that she really wasn’t interested in being photographed.  It was hot and sticky, right in the middle of nap time and Lydia was pretty unhappy!  She didn’t really cry or complain, but she sure didn’t smile either.  I wasn’t really happy with any of the images I was getting during that shoot.  Lydia was adorable with her cute blond pig tails, rosey round checks and bright blue eyes, but I wasn’t capturing her true spirit…yet!  I noticed that she kept making hand gestures and soon found out that Lydia knew sign language and was asking for her little brother.  We took a small break for Lydia to get a drink and give her brother a quick hug.  I remember her dad was holding the baby brother and let the two have a quick embrace that lasted only a few seconds.  I quickly grabbed my camera and was barely able to snap off one or two shots before the moment passed and to this day one it is one of the most moving images I have in my portfolio.  Not technically perfect – the composition is way off and maybe a little out of focus, but I’ve never captured a more natural moment in my entire career.

Several months later I found out that Lydia was scheduled for a very routine surgery to repair a hole in her heart.  Unfortunately sweet little Lydia had complications with her surgery and was hospitalized for several weeks.  I’m sad to say that Lydia didn’t make it and after a long fight she passed away.  I, of course, wanted to pass along some of the photos we had taken that day with the people that knew and loved Lydia – after all they were some of the last photos taken of this sweet angel.  I intended to have some images printed to display at the funeral but when I arrived the first thing I saw was a large image of Lydia and her brother barely touching noses in a quick impromptu embrace – the image that I barely captured!

It was that moment that really hit home for me. How much I love my job and truly the importance of what I do.  I help families capture memories that they will cherish for a lifetime.  I know it sounds corny, like something on a hallmark card, but I don’t take that job lightly.

Nichole Olea
Solea Photography
soleaphoto.com 

Want to see your loved one with Down syndrome in our calendar? Sign up for a photo session here! And learn about all of our great photographers: Solea Photography, MK Loeffler Photography, Your Story Photo Art, Fisher Photography and MNC Photography

Relay and Run for 21 – an inside look

In just over a week, people from across the area will lace up and run for Down syndrome in the Relay and Run for 21 half marathon and half marathon team relay. The run’s originator, Jeff Marvin, told us the back story of how this run came to be for our blog this week.

In the spring of 2011 I was sitting around the kitchen table at the firehouse discussing ways to raise money and awareness for Down syndrome; I wanted to do more than just sell T-shirts.  A suggestion was made about starting a run, since they seemed to be popular and a way to achieve my goals.  In the beginning, all of this was just an idea and nothing more.

In the summer of that same year I ran in a relay race from Madison, WI to Chicago, IL, which gave me more ideas about our race.  So, with a few ideas, my wife Amy and I started working on what type of run we wanted to do and how we would accomplish our goals. We didn’t want to do a 5K race because everyone does that, and after my recent relay event we decided on incorporating a relay.  I wanted to do a 21K and Amy thought a 3-person relay would be a good representation of Down syndrome.  The concept of the race is a 21K (representing the 21st chromosome) and three person relay (representing the three copies of the 21st chromosome that characterizes Down syndrome).

Originally I thought we could pull this off and develop our own 501c3 called Peter’s Peeps.  Realizing this can’t be accomplished with just us, we decided to bring in a new local organization I was a part of and that was D.A.D.S St Louis. I approached Barry Haith and Tim Neinhaus about making this idea a D.A.D.S spring event.  Jeff Neuschwander and Fleet Feet were already on board and soon we were developing a course and filing for the necessary permits.

The original idea for a course was going to be from the DSAGSL office in University City, to the Pujols Family Foundation in Westport Plaza, Maryland Heights.  But, since we wanted the course to be a 21K, we needed more distance and better parking options – this is how downtown Clayton became our starting point.  The point-to-point concept is another unique aspect of our race. It does present a challenge in planning, but in return our race is different from every other race in St. Louis – most of which are using a loop course concept.  The first year we put this race together in 2 ½ months and we were able to donate $5,000 split between the two charities, the DSAGSL and the Pujols Family Foundation.

This year we’ve had more time to plan and it’s paid off, as we are expected to almost double our runners and sponsorships.  This year the charities represented are the Down Syndrome Association of Greater St. Louis, the Pujols Family Foundation and now the D.A.D.S Community outreach fund.  D.A.D.S. is a group of dads that meet once a month to discuss how they can bring more awareness and advocacy for their children with down syndrome.  There are many chapters in the United States and we just started one in St Louis 2 ½ years ago.

The Relay and Run for 21 has become a passion.  What has been accomplished thus far is a true team effort and this is just the beginning.  With the continued help from the DSAGSL, PFF and D.A.D.S, this run will continue to be very successful for years to come.

Run for a cause on March 24! Register to run alone or with a friend – or volunteer at the race! Find out more at the race website here.

Make your mark on 3/21

Stumped on how to celebrate World Down Syndrome Day? We’re here to help!

It’s always nice to have a reason to celebrate, and in the Down syndrome community March 21 is a great day to do some big celebrating!

Chosen because of the numerical similarity to the medical name for Down syndrome (Trisomy 21, 3 copies of the 21st chromosome), 3/21 each year is a day to celebrate those we love who have Down syndrome and to make others aware of the intrinsic value of individuals with Down syndrome. Only recently has it taken on a larger audience, but World Down Syndrome Day (WDSD) is becoming a full-blown holiday in many areas. The blue and yellow that are held to be Down syndrome awareness colors are often seen in creative ways on March 21.

Locally, many families and groups celebrate WDSD in a variety of ways. Last year, my friend and I made iron-on transfers and created shirts that we and our kids proudly wore that day, telling those around us that we were celebrating EXTRA blessings. Some of our teachers and therapists also requested shirts when they heard we were making them, so there were many matching shirts bringing awareness at the school that our kids attended. It was an encouraging show of support and exemplified the love that these team members have for our children. We also took in blue and yellow frosted cupcakes to share with the classes of our kids and we read books about Down syndrome and talked about how we all are different in some ways but, in the most important ways, we are the same.

There are many ways to celebrate WDSD and use it as a chance to bring up conversations with friends, family and coworkers about why we are so proud of our loved ones with Down syndrome. Here are a few ideas and examples of what others have done.

  • Take cookies or cupcakes to school/ work decorated with blue and yellow (the DS awareness colors)
  • Make a little note with a picture of your child to leave next to the goodies in the break room inviting coworkers to celebrate with you
  • Pass out Tootsie Roll Pops with different colored wrappers with a note that says “We all look different on the outside, but it is what is on the inside that counts”
  • Read a book to your child’s class:
    • Age Appropriate Books:
      • My Friend Isabelle (ages 2-6)
      • Hi, I’m Ben and I’ve Got a Secret (ages 2-6)
      • Taking Down Syndrome to School (ages 5-10)
  • Pass out World Down Syndrome Day posters
  • Post facts about DS or celebrate your child on Facebook, Twitter or send an email to family and friends
  • Mail a postcard to family and friends celebrating your child. One last year showed a friend playing the guitar with a note that said, “Rocking his extra chromosome”
  • Have a Genes day or Dress Down for Down Syndrome day at work. Have people donate the money to the DSAGSL to participate.
  • Share a you tube video:

So choose one of these or get creative with your own celebration ideas! Just make sure that you take this chance to tell someone about how proud you are of your loved one, how valuable and precious they are.

If you’d like to join a group for a celebration, check out the DSAGSL Calendar to find one near you!

DSAGSL at the Affiliates in Action conference

Learning is the beginning of wealth. Learning is the beginning of health. Learning is the beginning of spirituality. Searching and learning is where the miracle process all begins.

- Jim Rohn

DSAGSL was fortunate enough to send two representatives to this year’s Affiliates in Action conference in Cincinnati. Aside from what the city itself had to offer – Skyline chili!  Graeter’s ice cream! – we walked away with a wealth of information, not to mention a great impression on the health of DSAGSL.  (And to Cardinal Nation, I assure you that we didn’t step within five blocks of their baseball stadium.)

Dance party time at AIA! A great time was had by all of the attendees on Saturday night during the conference.

Our delegation attended sessions throughout the three-day event, and gained a ton of insight about how we can work more effectively with our members and how we can be a part of what’s happening nationally to benefit individuals with Down syndrome. If there were several themes among everyone we spoke to, they were:

  • Progress – As we’ll share below, a number of groups are making strides in research and contributing to longer, more productive lives among the Ds population.  It’s a great story so far, but of course we have a lot of work left to do.
  • Collaboration – The good news is that there are many “doers” in the Ds community. The bad news is that we’re often duplicating our efforts, or in conflict about which method or idea is best. It seems several organizations are stepping up to bring people together and focus solely on making progress, which is definitely a good thing.
  •  Advocacy – Research is great, as are communication and idea sharing. But we all recognize there is more to do, and that is made possible by groups like DSAGSL and people like you continuing to raise awareness and pushing for more awareness, funding and support for Down syndrome.

Below is a sampling of the people and information we encountered. In addition to these presentations, there are a couple dozen others that we have at our office.  Contact us if you see a topic not covered here – we would love to share what we know and help you learn more!

  • Diagnosis to Delivery – Outlines many of the prenatal resources available to families to ensure the best possible information as a family begins its journey.  (Note: There is much discussion right now about which book is best or which philosophy is best. DSAGSL maintains a commitment to finding the BEST information for a family and for an individual, knowing that the best info may mean something different to each family.) See the presentation – click here
  • Seeking Home for Children with Ds – The rate of families who forge ahead with their child after learning of a diagnosis is increasing.  Groups like the National DS Adoption Network are also doing great work to ensure bright futures for children blessed with an extra chromosome. See the presentation – click here  
  • Research – As mentioned earlier, several organizations are stepping to the forefront.  DS Research and Treatment Foundation shared very good information on cognition, and the Global Down Syndrome Foundation also shared their latest findings regarding research and especially the connection to Alzheimer’s. See the presentations - Down Syndrome Cognition Research / Connection Between Alzheimer’s and Down Syndrome
  • Health Care – As the landscape of health care changes, in large part due to the Affordable Care Act, it’s important to know how it affects you. This presenter, based in Wisconsin, notes the impact of ACA on a national scale in addition to his home state. See the presentations – click here
  • Advocacy and Outreach – So many great presentations on this front! From NDSS sharing about governmental advocacy, to learning more about reaching minority populations, to tips on speaking to your child’s classroom, there is much to learn about using your voice to make sure people are truly aware and informed about Down syndrome. See the presentations - Make a Difference Through Advocacy / How To Talk To Classrooms of All Ages / Strategies for Outreach to the Hispanic Community

In looking back at the quote that started this post, the process of searching and learning was extremely productive and we’re glad to put this information to work for you.  Our staff is always glad to help you or take part in a presentation in your community, or to connect you with a resource that helps other to be more aware and appreciative of Down syndrome.  Most importantly, we’re excited to use what we’ve learned to improve how we serve the many miraculous and inspiring individuals with Down syndrome in our area.

PS – Two quick commercials if you’ve read this far:

  1. Please take the time to join us on Saturday for our 2013 Family Conference.  Our volunteers and staff have brought in our best speaker lineup yet, and it’s a great time to learn more about transitions – no matter what age your loved one may be.
  2. Registration for the 2013 Step Up for Down Syndrome walk is now open!  We have a VERY big goal in our sights and we need your help to get there!  Team leaders are encouraged to join us at the St. Louis Arc (1177 N Warson Rd, STL 63132) at 7:00pm on March 13 to learn more about this year’s walk and how your team captain can be a TV star in this year’s SUDS commercial.  See you there!

Jeremie Ballinger
DSAGSL, Executive Director