The Down Syndrome Association of Greater St. Louis celebrates 2013 Walk in the Park

(press release)

(St. Louis) Families from St. Louis and surrounding areas will come together with the Down Syndrome Association of Greater St. Louis (DSAGSL) to cheer on the St. Louis Cardinals at the annual Walk in the Park event at Busch Stadium on Saturday, September 28. Walk in the Park brings together more than 2,400 people from throughout the St. Louis Metro area to support and celebrate individuals with Down syndrome, and to raise community awareness about Down syndrome.  Walk in the Park participants will attend a pre-game pep rally hosted by Team Fred bird, happening just outside Busch Stadium, before walking the warning track. Attendees will then join the crowd in cheering on the Cardinals as they battle the Chicago Cubs! This is not an event to miss!

Please join us for a family day to remember! Event day schedule is as follows:

• [PHOTO OPPORTUNITY] 3:00pm: Pep Rally across from Gate 1, parking lot    between Poplar & Spruce

• 4:00pm: Over 2,400 supporters walk the stadium warning track

• 5:30pm: Pre-game ceremony and ceremonial first pitch

• 6:15: Play ball! Cardinals vs. Chicago Cubs

Tickets cost $35. For more information about the event please contact Jeremie at the DSAGSL office 314-961-2504 or jeremie@dsagsl.org. More information about our organization can also be found at dsagsl.org

About Down Syndrome

Down syndrome is a genetic condition that causes delays in physical and intellectual development. 1 in 691 babies is born with Down syndrome, making Down syndrome the most commonly occurring genetic anomaly. With medical advances, appropriate education, and social acceptance, people with Down syndrome are capable of excelling in school, successful employment, independent living, and most importantly, being contributing members of society.

About the Down Syndrome Association of Greater St. Louis

The Down Syndrome Association of Greater St. Louis is a non-profit organization that works to benefit the lives of people with Down syndrome and their families through individual and family support, education, public awareness, and advocacy. We envision a community where all people with Down syndrome can achieve their full potential.

Golf (and Fish) ’till You Drop for Down Syndrome Awareness- Birdies and Bass on July 15!

(press release)

The Down Syndrome Association of Greater St. Louis to hold 3rd Annual Birdies and Bass Tournament

The Down Syndrome Association of Greater St. Louis (DSAGSL) will host the 2013 Birdies and Bass tournament presented by Nucor Steel on Monday July 15 to help celebrate Down syndrome awareness. The tournament will include a day full of golfing and fishing as well as a dinner reception, live auction and raffle prizes.

This will be the third annual Birdies and Bass tournament. Birdies and Bass creates an opportunity for families and friends to come together in support for all of the special people in their lives who are affected by Down syndrome. Those interested are invited to form teams and encourage families and friends to join in a fun filled attempt at raising awareness for Down Syndrome.

The event will take place at Persimmon Woods Golf Club in Weldon Spring, MO. Participants will receive lunch, dinner, and beverages on course and chances to win various prizes. The schedule of events for the tournament is as follows:

  • 9:00am-Professional fishing clinic followed by an opportunity to fish for bass to lower golf score
  • 10:00am- Registration and lunch followed by the “birdies” portion of the event
  • After golf-Dinner and awards ceremony followed by the closing

For more information about Birdies and Bass or to become a sponsor please contact Jeremie at the DSAGSL office 314-961-2504 or jeremie@dsagsl.org. More information about our organization and this event can also be found at dsagsl.org.

 About Down Syndrome

Down syndrome is a genetic condition that causes delays in physical and intellectual development. 1 in 691 babies is born with Down syndrome, making Down syndrome the most commonly occurring genetic anomaly. With medical advances, appropriate education, and social acceptance, people with Down syndrome are capable of excelling in school, successful employment, independent living, and most importantly, being contributing members of society.

 
About the Down Syndrome Association of Greater St. Louis

The Down Syndrome Association of Greater St. Louis is a non-profit organization that works to benefit the lives of people with Down syndrome and their families through individual and family support, education, public awareness, and advocacy. We envision a community where all people with Down syndrome can achieve their full potential.

Learning the ropes – a Bike Camp volunteer’s personal experience

Last week we wrapped up the Lydia Cox Memorial Bike Camp at South Technical High School here in St. Louis. The camp was designed to teach individuals with special needs how to ride a two-wheel bike, a goal that has a success rate per camper of over 80%. By the end of the week, the whole camp was celebrating milestones and accomplishments – and this celebration was not lost on our volunteers. In today’s blog post, Katie, a first-time Bike Camp volunteer, talks about meeting, helping, getting to know and, of course, cheering on, her riders over the course of the week.

Matt – the confident crooner

With this year being my first year as a volunteer at Bike Camp, I was excited for the opportunity to see the joy of learning how to ride a bike, in action. I volunteered for two sessions each day. For my first session, I was paired with Matt, a tall teenager decked out in Cardinal gear and a talkative personality. Matt was well-balanced and had previous experience on a tandem bike, so right off the bat we were jogging beside him and his steady pedaling. It was a blast, and definitely a good workout. As the roller that replaced the back wheel became more and more altered to closely mimic an actual tire, we worked on balance and posture during his turns. Matt was confident and when we mastered the turns on the bike by the third day, we were on to the two wheeler.

My favorite moments with Matt, the speedy rider, was when he would get a consistent pace and really be in the zone. At that point, which was very often, he would start to sing. He sang to himself, but at a volume that enabled the other riders in proximity to know he was quickly approaching. Matt belting some great tunes allowed me to really see his confidence on the bike flourish each day. He was self-assured in his pedaling, balanced on his turns, and moving at a steady-speed – what else was there to do besides sing? I would have joined him in song, to celebrate his progress, but I had to focus on keeping up with the speed racer.

By Thursday, instead of running beside Matt, there to steady him if needed, I was on the sidelines, cheering for Matt. My confidence soon matched his confidence and I no longer worried if he needed help or assistance. He had mastered the bike, as well as, what to do if he didn’t make each turn. I had to opportunity to talk with Matt’s dad and share his excitement over Matt’s incredible skills on the new bike. Matt’s dad told me about their tandem bike and the rides they enjoyed together. Matt mastering the two wheeler, his own bike, really provided new biking opportunities for the two of them. It was a joy to watch Matt and it was a joy to witness a proud father become even more proud of his bike-riding son.

Drew – the strong, silent type

My second session, was with Drew, the very quiet, but very strong, 15 year old that was very focused on getting right on his bike the second he was in arms reach. Because Drew struggled to keep his head up, I walked backwards, in front of his bike for most of the session for the first couple of days. I was constantly encouraging him to look up at me by keeping a big smile on my face, which was easy to do in Drew’s presence. By day 3, I didn’t have to walk backwards as much, because he was looking straight ahead with new confidence, all on his own.

The best moment on the first day was when Drew hit a cone at a turn and thought it was absolutely hilarious. It was the first time I saw his amazing smile, and because he was very quiet at camp, I was thrilled to see more of his awesome personality. Drew was the ultimate rider because when he got on the two-wheeler, every so often he would lose balance and tip over, causing myself to panic, but causing Drew to laugh. He found humor in his little falls and allowed us to see his infectious smile. Encouraging Drew to keep his strong legs in constant movement, kept us in constant movement. Every time he picked up speed, he smiled, I smiled, everyone smiled.  His attitude and strong determination led him to get on the two-wheeler on Thursday and Friday, where I was able to see his amazing progress and pride in himself.

Bike Camp was an absolute joy to volunteer at for the week. As an avid volunteer with those with developmental disabilities, I loved interacting with all the riders and witnessing their progress in learning how to ride a bike. Bike riding is a rewarding experience because of the personal effort you put towards the act of biking. Riding a two-wheeled bike is something done on your own, as you, only, are in control of the pedals, brake and the handle bars. Many times those with developmental disabilities don’t always get the chance to truly do something on their own. This camp allowed the riders to develop the skills to really do something on their own, have full control, and succeed at the enjoyable experience of riding a bike. It was a honor to be among the new riders, and see the personal accomplishments of their stronger confidence and self-assurance.

Blog share – Noah’s Bike Camp story {TherapyOnWry.com}

Mom and blogger, Andrea, shares her son Noah’s experience at the Lydia Cox Memorial Bike Camp that took place June 3-7 at South Tech High School. For this and more from Andrea’s blog, Therapy On Wry, visit her at www.therapyonwry.com. Photos courtesy Therapy On Wry.

I Believe I Can Fly

I am not a quitter by any stretch of the imagination.  Once I begin a project — I see it through to the end.  No matter how much blood, sweat and tears are required.  My biggest roadblock is often in the starting.  As a parent, raising a child with special needs, I’m conditioned to come up with creative ways to help my child learn and do all the things I see his peers doing.  But sometimes, the road stretched before me seems all uphill.

It’s those times that I’m reminded of the words from American Poet, Ralph Waldo Emerson:“We are limited, not by our abilities, but by our vision.”And, it’s also about this time I must remind my hard-headed self that I’m not supposed to be doing this alone.A couple of months ago Noah’s occupational therapist asked me why Noah wasn’t riding a bike.  Her question caught me offguard and I responded with something like, “Are you crazy?”Seriously, we’re talking about a kid who regularly stubs his toe or bumps his head walking from his bedroom to the kitchen.  The idea of teaching him to ride a bike on two wheels seemed like a prescription for an ER visit.  But, then she told me about a program called “I Can Shine” (formally known as Lose the Training Wheels).  I was hesitant, but decided to investigate the program.  When I went online I learned that together the Down Syndrome Association of Greater St. Louis (DSAGSL) and the Lydia Faith Cox Foundation would be hosting the five day bike camp in my area.  I spoke with Erin Suelmann, DSAGSL’s Program Director, who shared some encouraging stats…the “I Can Shine” program boasts an 80% success rate.

I liked those odds.

The program costs $150 but because of the generosity of both the DSAGSL and the Lydia Faith Cox  Foundation, included a brand new bike and custom-fitted helmet for each camper.

On the first day Noah was a little apprehensive.  ”Why are we doing this?” he asked.

“Because it’s going to be great!  YOU are going to learn to ride a bike!”

Noah was really worried about falling.  I assured him that he would have two spotters, one on either side of him, who would be making sure he was safe. Camp was held at South Technical High School in Sunset Hills.  After we signed in and he received his official “I Can Shine” t-shirt, we headed over to the bike helmet-fitting area.  Two representatives from Children’s Hospital were on hand to make sure each camper had a perfectly fit helmet.  While Noah waited in line, he was introduced to Steph and Heather, the two volunteers who would be spotting and cheering Noah on all week.  Immediately, Steph began breaking the ice by finding ways to interject Star Wars into their conversations.  I’d forgotten that earlier, when I’d initially signed Noah up for camp, that I had provided them with a list of Noah’s likes.

I breathed a sigh.

We were off to a good start.  After Noah received his helmet, the three of them headed to the gym and the team put Noah on one of their special “roller bikes”.  Each roller bike has been handcrafted and designed by retired, mechanical engineering professor and program founder, Richard Klein.  That first day, I watched Noah’s confidence grow with each lap he made around the gym — all the while his two spotters were running alongside him — laughing and eager to listen to Noah share his vast knowledge of Star Wars trivia during the 75 minute session.

That evening at dinner, when it was Noah’s turn to say what he was thankful for, he shared, “I’m thankful for bike camp.”

I pushed down the lump that had suddenly taken over all the space in my throat and squeaked, “me too.”

The next day, Noah was excited about going to camp and eagerly jumped on a bike.  By day three, he was up on two wheels!  Between running (literally) his spotters ragged as he pedaled with more confidence and speed!…Noah really enjoyed leaving his mark as he squeezed his brakes hard to make tire tracks at the end of the straightway.

“How long was that one?” he inquired.

Boys…everything is a competition.

Day four was devoted to turning.  He fell once and I held my breath but kept my feet planted to the spot as the volunteers were quick to get Noah back up on his bike to try…try again.

As I watched Noah ride and Steve snap enough pictures for us to create a stop action movie…I spent a little time talking to Suzie Risher, founder of the Lydia Faith Cox Foundation, named after her daughter who died three years ago.

I marveled at this woman.  She could have easily (and I wouldn’t blame her a bit!) curled up and let her grief swallow her up.  I cannot imagine a grief larger than when a parent loses a child.  But, she didn’t.   And, because of her vision to see beyond today and even tomorrow –she has given myself and many other parents the opportunity to watch our children soar.

I believe Lydia’s spirit was with us at camp, giving each one of our children invisible wings…now it’s up to us not to clip them with thoughts of doubt.

Today, after another successful ride with his Dad, Noah came in to tell me that he rode down our hill for the first time…”and I went FAST!”  He told me he kept thinking, “I believe I can fly.”

Ask Megan – her best advice, straight from the source

Today for Ask Megan, we are putting down the video camera and letting Megan pick up a pen and paper. 

Megan has been the start of her video blog for almost two months and she couldn’t be happier about it. She’s covered a lot in that short time – from questions about her personal life, her hopes and dreams, her vacation plans, thoughts on important current issues and even her favorite cookie recipe. To celebrate her role with the DSAGSL, we asked Megan to type up her best pieces of advice to share with you – her favorite audience.

  • Be your own person. Be who you are and don’t ever change.
  • We are all the same, but we are different.
  • You have the right to stand up for yourself and what you believe in. Be a Self-
    Advocate!
  • You have your own voice so use that voice that you have.
  • Never back down , don’t give up. That comes from within.
  • Your heart gives out a heartbeat that keeps you alive and the right to be born. You have the right to live. So Live! Live life!

ADVOCACY UPDATE: Contact Maryland Governor Regarding Death of Ethan saylor

(information via NDSC)

Overview 

It has been almost five months since Ethan Saylor, a 26-year-old man with Down syndrome, died while being restrained by off duty law enforcement officers. Ethan was attending a movie at a local theater in Frederick County, Maryland – a place he visited quite often. When Ethan verbally refused to leave the theater after the movie ended, and while his support staff had gone to get their car, mall security was called, and Ethan was restrained face-down. Ethan’s staff reentered the theater, attempted to intervene to calm the situation and was refused. Ethan’s mother, who had been called by Ethan’s staff, was within a few minutes of the theater. Instead of picking her son up and taking him home, Ethan’s mother was re-routed to the local ER and was met with the devastating news that her beloved son was dead. A grieving family has lost their beautiful son.

Take Action

There has been much speculation about the details surrounding Ethan’s tragic death since it occurred. The only way to get a complete understanding of what occurred so that appropriate measures can be taken with regard to those involved, is through an independent investigation. The Frederick County Sheriff and State’s Attorney have already expressed their views that having Down syndrome was the sole contributor to Mr. Saylor’s death, rather than the security guards’ responses to Mr. Saylor, an individual with Down syndrome.

Please email, fax, and/or call Governor Martin O’Malley of Maryland to demand an independent investigation into the death of Ethan Saylor. 

Call Script Talking Points

Governor Martin O’Malley

Toll-Free 800-811-8336

Office:  410-974-3901

Hello, I am (state name and where you live). I am a (parent, sibling, grandparent, aunt/uncle, teacher, friend) of a person with Down syndrome. I am calling about Ethan Saylor, a man with Down syndrome who died while at The Regal Westview Movie Theaters in Frederick, Maryland in January.

I am requesting an independent investigation into Ethan’s death, so the facts can come out and those responsible can be appropriately prosecuted.

While waiting for his support staff to retrieve their car after the movie, Ethan decided he wanted to remain for another showing. He verbalized to the Officers his intent to remain and refused to leave his seat. The Officers attempted to physically remove him from the theater. He was restrained face-down by three plain-clothes officers moonlighting as mall security. Ethan died from asphyxiation from a crushed larynx while handcuffed. His senseless and avoidable death was ruled a homicide by the Maryland Medical Examiner. The Frederick County Sheriff’s Office (FCSO) and The Office of the Frederick County State’s Attorney neglected to conduct a thorough investigation of the facts involving the case. A Grand Jury was convened but failed to hand down an indictment against the officers involved.

Despite the Sheriff’s own public comment that the internal investigation has been completed and the officers have returned to full duty, the FCSO refuses to release investigation results to the family’s attorney, despite numerous written requests.  Ethan’s death was senseless and entirely avoidable.

Email/Fax Template

Governor Martin O’Malley

Email: governor@gov.state.md.us Fax: 410-974-3275

Dear Governor O’Malley:

I am writing as a (parent, sibling, grandparent, aunt/uncle, teacher, friend) of a person with Down syndrome regarding Ethan Saylor, a man with Down syndrome who died while at The Regal Westview Movie Theater in Frederick, Maryland in January. I am requesting an independent investigation into Ethan’s death, so the facts can come out and those responsible can be appropriately prosecuted. Despite the Sheriff’s own public comment that the internal investigation has been completed and the officers have returned to full duty, the Frederick County Sheriff’s Office refuses to release investigation results to the family’s attorney, despite numerous written requests.

While waiting for his support staff to retrieve their car after the movie, Ethan refused to leave his seat. He was restrained face-down by three plain-clothes officers moonlighting as mall security. Ethan died from a crushed larynx while handcuffed. His senseless death was ruled a homicide, but the Frederick County Sheriff and Prosecutor neglected to conduct a thorough investigation of the facts and the grand jury refused to indict. The prosecuting attorney’s office refuses to turn the results of the investigation over to the family’s attorney. Ethan’s death was senseless and entirely avoidable.

Sincerely,
[Insert contact information]