Wednesday, August 31, 2011

IEP step-by-step guide

IEP Meeting

from disability scoop:

A new guide released Tuesday provides parents with a step-by-step look at how to obtain special education services from their school district.

The 26-page download from Autism Speaks offers a broad overview of the legal rights of parents and students with disabilities and walks through the process of forming an individualized education program or IEP.

The guide was prepared by attorneys at Goodwin Procter for the autism advocacy group, but is written in layman’s terms, using bullet points and flow charts for clarity.

“The IEP process can be daunting, overwhelming and highly frustrating for parents who are trying to ensure their child is getting the appropriate educational opportunities,” said Lisa Goring, vice president of family services at Autism Speaks. “We hope this guide will give families an effective road map that prepares them to make informed decisions and advocate for their child as effectively as possible.”

Though produced by Autism Speaks, most of the information included in the guide is applicable to all students that qualify for special education, irrespective of their diagnosis.

Tuesday, August 30, 2011

Troy Polamalu supports sidelined player with Down syndrome

In mid-August, Prep Rally brought you the story of Brett Bowden, the inspiring Hobbton (N.C.) High football player with Down Syndrome who will be unable to suit up with his longtime varsity teammates during the 2011 season because he turned 19 before the school year began. Well, now the young athlete's cause has gained a celebrity football backer: Steelers All-Pro linebacker Troy Polamalu.

Shortly after Bowden's story became national news, someone sent Polamalu a link to the Facebook page entitled "Let Brett Bowden Play ", an online forum where more than 65,000 Facebook users have pressed "like" and commented in an effort to add public pressure to the North Carolina High School Athletic Association, which first ruled that Bowden couldn't dress with his teammates.

Like many others, Polamalu was moved by Bowden's story, and decided to fire out the following Tweet on his personal Twitter feed :

"This young man Brett has Down Syndrome & because of his age is barred from High School fball.Plz like his Facebook page"

While it's impossible to know how many more "likes" or fans Polamalu's Tweet helped Bowden gain, the linebacker's brief online missive was re-Tweeted by more than 100 people itself, which would lead one to believe it was read a fair share of times. That's not to mention the nearly 250,000 followers of Polamalu's personal account who would have seen the Tweet in their own Twitter feed as it went live.

Of course, none of this has dramatically changed Bowden's core situation. The junior continues to attend Hobbton practices and games, even though he can't dress out in the team's full uniform. He will allegedly going to be able to participate in touchdown drills after the team's games during the forthcoming season, with the stipulation that those plays will have to be run after all competition has been completed.

That being said, it never hurts to have celebrities backing one's cause, particularly when they are of the caliber -- both in terms of achievement and likable personality -- as Polamalu.

Add to that the pro arena football offer which has already been extended to Bowden , and at least the teenager knows he has plenty of people behind him ... and options if he ever wants to try another level of football. That's more than you can say for a lot of football players around the country.

Group to climb Mount Kilimanjaro to raise funds for Up With Downs

from Inforum:

Three-year-old Tate St. Louis has a way of making even strangers fall in love with him.
His family says they would do anything for him, even hiking up the tallest mountain in Africa.
That’s exactly what they plan to do.

Tate’s uncles John and Jeff Amble, grandmother Jane Amble, along with aunt Terese Amble (Jeff’s wife), great-aunt Jodi Borgen and John’s girlfriend, Christina Mitsialis, plan to hike to the top of Mount Kilimanjaro this week.

The group hopes to use the trek as a fundraiser for Up With Downs, a Fargo-Moorhead-based organization co-facilitated by Tate’s mother, Liz St. Louis.

Up With Downs aims to improve the lives of individuals with Down syndrome and their families with education, support and activities.

“As soon as we decided that we wanted to use the trip to try to make a difference, we knew that Up With Downs was the organization we wanted to support,” John Amble said. “Our goal is to raise $5,895, one dollar for every meter of Mount Kilimanjaro’s vertical height.”

So far, the group has raised about $3,200.

The idea to conquer Mount Kilimanjaro sprung from a discussion between John Amble, his aunt Jodi and his mother, Jane, while they were visiting him in London, where he now lives.

An experienced climber, Amble said he has wanted to try Kilimanjaro for several years.

“My girlfriend said yes immediately, as did my brother and his wife. Once we all decided to do it, we thought that it would be a great opportunity to raise money for an important cause, and doing so for Up With Downs would make the trip so much more meaningful,” John Amble said.

While Borgen was also in right away – she hoped to one day climb Mount Kilimanjaro anyway – Jane Amble admits she needed a little convincing to make the climb.

“The more we talked about it … not only to do it for my family, but for a good cause, I was hooked,” Jane Amble said.

She said she has been training for about four to six months, hiking around the F-M area.
The group will arrive in Tanzania on Monday and begin their climb on Wednesday.

“The route we’re taking is called the Rongai Route, one of the least-used routes, and that begins on the northern side of the mountain, near the border with Kenya,” John Amble said.

Both Jane and Liz St. Louis said the adventure with a good cause was not a surprising proposition coming from John.

John graduated from the University of Minnesota in 2004 and served for several years as an intelligence officer in the US Army.

After deploying to Iraq, John moved to London and earned a master’s degree from King’s College London in 2010. He then deployed a second time and served in Afghanistan. He currently is back in school, completing a Ph.D. in Middle East studies.

Although John has lived many of the past years far from home, he and Tate are close.
“To have my family care enough to raise money for the group was just kind of amazing,” Liz St. Louis said.

Contributions to the climb and Up With Downs can be made at

Friday, August 26, 2011

Down Syndrome Association Launches Football League

from Leesburg Today:

The Down Syndrome Association of Northern Virginia this fall will sponsor the first football league for individuals with special needs in the Northern Virginia area.

"We are proud to bring this opportunity to individuals with special needs in Northern Virginia," said Brian Ray, president of DSANV. "This league is about the entire football experience--the excitement of the sport, the unity of a team, the support of the fans, and the reward of players pushing themselves to achieve. But most importantly, it's about transforming disabilities into abilities and achievements."

DSANV created this league to give young people with a physical or intellectual disability the opportunity to participate in the popular American pastime. The friendly games will be played in a non-contact, modified flag football style in order to encourage team work and inclusivity.

The league will kick-off its inaugural season with its first game on Saturday, Sept. 10, and will run until Saturday, Nov. 12. Games will be played at noon on Saturdays at Freedom High School in South Riding.
There is no registration fee and participation is open to the public. Upon registration, each player will receive a team jersey.

Midway through the season, DSANV plans its 7th annual Buddy Walk fundraiser, which will be held from 10 a.m.-2 p.m. Saturday, Oct. 15 fat Bull Run Regional Park in Centreville. The proceeds raised from this event allow DSANV to continue offering programs that promote understanding and acceptance of people with Down syndrome. To register for this year's Buddy Walk, please visit​.

For additional information about the league or to register for participation, please contact Maureen Buckley at (703) 621-7129 or

Thursday, August 25, 2011

boys raise money for Down syndrome with lemonade

The Rosser boys, Brendan, 7, and Brett, 4, turned a recent cloudy day in one full of sunshine. When the Springfield boys learned their father sponsored a hole for a golf tournament for Down Syndrome, they asked many questions about Down Syndrome and then decided they wanted to help. The tournament, The Lil Bealsy Tee-Up for Down Syndrome, is Friday, Aug. 19.

After much thought, the Rossers decided to have a lemonade stand to try to earn money to help the children.

They first set up their stand at a park, but there were no customers. After making a couple of calls, Brendan and Brett set up business at the Acme on Baltimore Pike.

They learned first hand how many people are willing to help a good cause. The boys made $89 and served each customer with a smile, explaining why they were selling lemonade.

The boys delivered the money to the founder of the organization, Brian Beale.

Wednesday, August 24, 2011

Grandfather to race across Sahara for Down syndrome

Richard Davies would go to the ends of the earth for his grandchildren.

And next April, he will.

The 57-year-old attorney will participate in the Marathon des Sables, or Marathon of the Sands, and in doing so, hopes to raise money and awareness for The Up Side of Downs, an organization for families affected by Down syndrome.

Davies, a native of Wales, has two grandchildren, one by each of his daughters, with the disorder.

He said when he tells people about the trip, most just ask, “Are you crazy?”

He says, “Maybe people will think, ‘If you are willing to do that, then I’m willing to donate.’ ”


The Marathon des Sables is a 155-mile, seven-day race through the desert of Morocco.

Competitors run or power walk through some of the most remote sections of the Sahara while carrying a backpack with essential gear, food, sleeping bag and clothing for the week. Water (generally nine liters per day) is provided and rationed, along with a two-sided Berber tent each night for sleeping.

According to the official regulations, there are six stages over seven days, with the first three daily stages set around 20-25 miles each. The fourth stage is around 50 miles, the fifth stage is always a full marathon of 26.2 miles, and the sixth and last stage is from 9 to 13 miles.

Only 850 people worldwide are chosen by lottery to participate each year. Davies is one of 45 from the United States and the only participant from Ohio.

The entry fee for the race is $3,900, with first prize being around $6,500. When air fare, at about $2,000, is added in, along with equipment costs, it may leave you scratching your head.

“People don’t run it to win prizes. They say it’s just an achievement to finish,” said Davies, who calls it a once -in-a-lifetime opportunity. “Only 11,000 people have done this.”

A big fan of television show “The Amazing Race,” Davies always thought, “I can do that.”

That sums up his mental attitude. He believes his fear of being posted on the online “quitters list” will drive him.

“I don’t want to make a fool of myself,” he said.

Participants get one flare in case they get lost in the sand, but if they use it, their race is over.

The same goes for the one allowable IV in case of dehydration. If you need a second one, you’re done.

Training for desert heat and the weight he will need to carry is the next step.

He plans to run in heavy clothing, work on his core and shoulder muscles and perhaps find a nearby college with a heat chamber.

“I recognize it’s going to be awfully hot,” he said.

He will go to Morocco a few days ahead of the race to get acclimated to the nearly 120-degree heat.


Davies said he always has been very independent, even as a child.

As an 8-year-old, he would fly from the United States to his boarding school in England. He said he even traveled alone across the Atlantic on the Queen Mary and the Queen Elizabeth when he was an elementary student.

“Someone would meet me at the dock and put me on a train to the school,” he remembers with a smile.

Now his adventures revolve around orienteering, a navigation activity using a map and compass.

Participants receive a detailed topographic map on which a variety of land features are circled as control points. The hiker navigates as quickly as possible to each marker.

Most events are held at local metro parks, Davies said.

His command of the compass, he said, will come in handy should he get lost in a sand storm in the Sahara Desert.

His loved ones at home, including his wife, Billie, can watch his progress online because he will be wearing a GPS system on his ankle. Cameras will allow them to see him at the check points.


Among those watching will be his 10-year-old grandson, Ryan Troyer, of Lake Township.

Ryan, along with Davies’ 4-year-old granddaughter, Drusilla, who lives in Portland, Ore., has Down syndrome.

“They are wonderful,” said the soft-spoken Davies, whose Welsh accent is faint but noticeable. “They are loving, wonderful, headstrong children.”

Ryan’s mother, Amy Troyer, said she watched a video about the marathon and was in “utter shock.”

“I’m behind him 100 percent. He can bring some awareness to something close to our hearts,” she said.

Troyer remembers when Ryan was born, she and her husband, Mark, were given a video that presented the most somber view of their future with Ryan.

She remembers going home and making dozens of calls to find help. She compared it to “throwing rocks and seeing if they hit anything.”

What transpired was her new career path as a counselor and advocate for people who find themselves in her situation.

“There is a reason they are here. God has a plan for them,” Troyer said. “We are a different family because of Ryan.”

Her daughter Abigail, 13, is his biggest advocate, she said.

“If I can just tell parents, ‘Don’t mourn.’ If I can help them not to be sad,” Troyer said. “I’m here to make a difference.”

Her father hopes his walk across the Sahara will bring money and awareness to an organization that has been there for his daughters.

“I say to myself, ‘I can do it,’ ” he said. “And I pray for strength and resolve to do it.”

Tuesday, August 23, 2011

special girl takes on traditional school

from the Coloradoan:

When Gretchen Coon walks to the bus stop every morning, the 6-year-old is already famous, waving at everybody in sight and yelling their names.

She stepped off the bus at Linton Elementary School on Monday morning and began greeting her public, shaking hands and hugging the many parents, teachers and students who approached her as if she were a celebrity as she walked to her kindergarten classroom with confidence and pride.

In many ways, she is a celebrity. Gretchen has been a familiar face to the Linton family since her sister, Brigid, 7, stepped through the school’s doors. The girls’ mother, Linda Trentman, volunteered for the school and often brought Gretchen along.

While many people know her for her big heart and huge hugs, Gretchen Coon has another
characteristic most recognize: Down syndrome.

But unlike some special needs students, Gretchen started school in a traditional classroom Monday, a decision her parents, Trentman and Jeffrey Coon, said was crucial to her development.

“The statistics on Down syndrome are changing because more and more kids are being given the opportunity to be educated in a traditional classroom with their peers, as opposed to going to special schools or away to institutions,” Jeffrey Coon said.

Beyond the benefits to Gretchen’s own learning process, Trentman said her daughter’s ability to love without prejudice will teach other students to live openly with kindness and respect.

“Let (special needs kids) be who they are,” Trentman said. “They make other people better people. She still brings tears to my eyes because she’s such a great kid.”

“She’s been a magnet for everything positive,” Jeffrey Coon added. “I have flaws; she has none. Everything that comes out of her is 100 percent pure.”

Gretchen has always opened her heart to meeting and loving everybody she meets. Whether it’s her big sister’s classmates or a person on the street, Gretchen proudly extends her hand to make a new friend, Brigid said.

“She’s the brave one.”

For her parents, Gretchen’s first day of school was a milestone they have prepared for since she was born. As for Gretchen, going to school for the first time meant only one thing: making new friends at recess.

“I’m going there to have recess,” Gretchen said. “I go outside and play around. The end.”

She waited patiently as she sat in her classroom for the first time, learning how to sign up for lunch, hang up her backpack and sing the morning song. But finally, it was time.

Gretchen ran out to the playground, beaming in anticipation, and headed straight to the jungle gym. She marched up the stairs without the slightest hint of trepidation as a group of about 10 students gathered at the bottom to cheer her on.

She looked down and hesitated.

“C’mon, Gretchy,” her sister and friends cheered.

With a small smile, she slid down into the arms of a family that loved and appreciated her for being just who she is.

Monday, August 22, 2011

Meet Do Something Awards Winner Sarah Cronk


Sarah won a $100,000 Grand Prize at this year's Do Something Awards on Vh1. Check out what inspired Sarah to start her program in her interview below.

Sarah Cronk watched her older brother Charlie struggle to fit in during high school because of his disabilities. He was depressed and anxious, until the captain of the swim team invited him to join. Suddenly, the cool kids welcomed him, and he found a new group of friends. Inspired by Charlie, Sarah co-founded the first high school-based inclusive cheerleading squad in the nation. Today, The Sparkle Effect has generated 26 squads in 15 states and South Africa, encouraging a culture of acceptance in every community.

Interview with Sarah Cronk asked Sarah how she got started with her project and what advice she has for other young people. How did you feel when you first learned of the problem you are addressing?
Sarah Cronk: When I first began to see that most high school students with disabilities are excluded from high school sports (and the accompanying social benefits), I felt disheartened. My older brother Charlie was born with a disability that prevents him from fully understanding social cues, yet Charlie is very socially motivated and one of the kindest people I know. Transitioning into high school was rough for Charlie. Then, a popular upperclassman invited Charlie to join the swim team. The swimmers accepted Charlie into their social group and gave Charlie a place where he belonged. To me, this idea of belonging–of being an accepted part of a high school community–shouldn’t be considered a privilege available only to some students. Rather, we should consider it a basic human right.

DS: How do you feel about it now?
SC: I feel very optimistic! I have seen first-hand the willingness teens have to accept and include their peers with disabilities. I also feel that teens are perfectly positioned for this important task. Adults, no matter how well meaning, simply cannot provide the social acceptance that every teen wants. Only teens can lead the social inclusion movement.

DS: What person or experience sticks with you from when you first started your project?
SC: I will never forget my experiences with one of the girls on our local Sparkles squad. Alison arrived at the first practice with a unique set of challenges. She felt uncomfortable with the texture of the practice mats and refused to stand on them. For several practices, she came dressed in a variety of different wigs. She spoke only if called by the name of the particular character (like Hannah Montana) she had dressed as that day. At first, I didn’t know how to handle the situation, so I looked to Alison’s mom for guidance. Her advice: just go with it. Following her mother’s lead, I decided to meet Alison where she was, even if that meant calling her Hannah Montana for a few weeks. For a while, I let go of teaching Alison cheerleading skills altogether. Instead, I worked on building trust.
During the first few football games, Alison attached herself to one of our peer coaches–literally. Alison clung tightly to her arm, and would not to let go even to clap or jump. Eventually, about four months into the program, we began to see a shift. Bit by bit, we saw the wigs and costumes less often. Alison began to respond to her own name, to interact with the other girls, and to participate right along with everyone else. She even began calling her teammates in the evenings and arranging for movie dates and shopping excursions on the weekends.
Now, it is always Alison, not Hannah Montana, who shows up to practice. It is Alison who cheers in front of hundreds of fans. It is Alison who struts out onto the basketball court independently, confident that her teammates are there if she needs them, but also confident that she can perform beautifully in front of the students.

DS: Who or what is your inspiration to keep going?
SC: My biggest inspiration is hearing back from cheerleaders, students with disabilities, and their parents who have benefitted from their own Sparkle Effect squad. I also love to hear from teachers and administrators who say The Sparkle Effect has inspired a resurgence of school and community spirit. Cheerleaders across the country have reported that they love their work with The Sparkle Effect so much that the trajectory of their lives has changed. Some have decided to go into special education. One girl even went on to create another inclusive club within her school, which sponsors monthly inclusive social events, like pizza parties and movie nights.
My favorite stories are from parents. Parents of students on Sparkle Effect squads report that their children have improved physical fitness and motor skills, greater confidence, and higher self-esteem. Some parents have even reported that the benefits of inclusion on the field have resulted in better report cards in the classroom. One father told me that he heard his daughter say more in a 45-minute Sparkle Effect practice than he had heard her say in the past four years.

DS: Can you describe the moment you knew that you were actually making a difference?
SC: Our local Sparkles squad began practicing in the high school cafeteria in the summer of 2008. The Sparkles did a great job in the safe, sheltered environment of our school’s cafeteria. However, I worried about the student body’s reaction during the Sparkles’ debut at the first home football game. Our “front line” of seniors is known for being particularly rowdy, and I was concerned about how they would respond to our new group.
As it turned out, my fears were completely unfounded. As the Sparkles took the field with us, the entire student section—even the senior boys—stood up and began chanting, “Let’s Go Sparkles, let’s Go!” When we finished performing, the entire stadium full of spectators rose to their feet and began to cheer. At that moment, I realized that this unprecedented and unlikely squad was going to change my high school forever.

DS: What was the most difficult roadblock you faced when you tried to start your project? When you were growing it?
SC: While finding our first local Sparkles turned out to be relatively easy, the first few weeks of practice were bumpy, to say the least. One girl repeatedly threw tantrums. Another kept hitting, kicking, and scratching her teammates. Many of the girls lacked impulse control and all of the girls lacked focus. We decided to go back to basics. We focused a little less on cheering and stunting and a little more on games and exercises that would help us get to know one another. After a few weeks, the girls learned to trust us and one another. They actually began to skip into practice with bright eyes and huge smiles.
The Sparkle Effect came with a completely different set of obstacles. When I first created The Sparkle Effect, I had enthusiasm, passion, and a website that included all of the tools necessary for other teens across America to duplicate the success of our Sparkles’ program. What I didn’t have was money. This turned out to be a blessing in disguise. Without funds, I was forced to come up with creative ideas for getting the word out about The Sparkle Effect. I turned to national organizations focused on disabilities, high school sports, and volunteerism, and asked them to profile The Sparkle Effect on their websites cost-free. The support I received was both humbling and awe-inspiring. Within a few months, The Sparkle Effect was appearing on several national websites. Then, much to my surprise, in the fall of 2009, our local Sparkles squad captured the attention of the national media. After appearing in People Magazine and on Oprah, I received tons of e-mails. The national exposure invigorated and inspired hundreds of cheerleaders across the country.

DS: What’s been the biggest lesson through the process?
SC: I have learned that while having compassion is important, acting on that compassion is critical. I have also come to understand that social inclusion helps people learn to see the person and not the disability. I have thoroughly enjoyed turning on its head the stereotype of cheerleaders as self-involved elitists. Sparkle Effect teams instantly transform what was previously seen as the most exclusive group in high school into the most inclusive.

DS: What has surprised you the most about the journey that has taken you here today?
I started the Sparkles and The Sparkle Effect because I wanted to help students with disabilities find social connection. I didn’t fully understand that connection is a two-way street. Through my work, I have found levels of connection that I never expected. I thought that I would be teaching students with disabilities. I did not realize that they would be the ones teaching me.
The amazing, wildly enthusiastic support from student fans nationwide has been a surprise. When it comes to the social inclusion of students with disabilities, students are leading the charge and sending the message loud and clear to other teens and adults: Tt’s cool to care.

DS: What advice do you have for other young leaders who are having a tough time getting their ideas off of the ground?
SC: Adopt an unwavering belief that you can and will make a difference. If and when you get stuck, let go of the uncertainty about the big picture. Refuse to see roadblocks. Instead, see signposts. Understand that roadblocks are actually arrows pointing to a new (and usually better!) path to your destination.
Also, assume that people are good and helpful and well-meaning (people love positive reinforcement).
Finally, never be afraid to be totally excited about your work. The world needs more unbridled enthusiasm.

DS: If you could have done one thing differently based on what you know now, what would it be and why?
SC: I would have sought advice and assistance earlier than I did. I [knew that I would] only generate squads if people knew about them. I decided to mail 100 letters to high school cheer squads nationwide, telling them about The Sparkle Effect and urging them to start a squad. This work generated not a single squad.
Then, in a moment born more of desperation than inspiration, I contacted Jeff Webb, the President and CEO of Varsity, Inc. and the Universal Cheerleading Association, the two largest and most successful cheerleading companies in the world. Mr. Webb had started his extraordinarily successful company by himself out of his tiny apartment, so I thought that maybe he would be willing to offer advice. Not only did he offer advice, Mr. Webb has turned out to be one of my most ardent and effective supporters. His companies have featured The Sparkle Effect on their websites, in a video that aired on closed-circuit hotel television at the Walt Disney Resort during the National Cheerleading Championships, and at cheerleading camps across the country. Mr. Webb also agreed to partner with me to provide cheerleading uniforms to new Sparkle Effect squads throughout the country. His company, Varsity Spirit Fashions, matches Sparkle Effect grants dollar-for-dollar and adds a 20% discount to all uniform purchases. Through Mr. Webb’s unwavering support, The Sparkle Effect has reached virtually every high school cheerleader in America and outfitted seventeen squads nationwide. Now, whenever I need help, I ask for it!

DS: What’s next for your project?
SC: The Sparkle Effect will continue to generate and outfit squads coast to coast! The Sparkle Effect is enjoying tremendous momentum. We have generated twenty-seven squads, twenty-three of which were created in the past fourteen months alone!
In the highly competitive world of high school sports, teens are taught to perfect their skills, to conquer, to win. Sparkle Effect squads are not about perfection; they are about connection. In many towns across America, Friday night football and basketball games are the main event. Sparkle Effect teams nationwide are throwing a big, bright spotlight on the richness that results from inclusion. Fans are leaving sporting events entertained and inspired. I know that the magic of The Sparkle Effect can easily reach into every high school in the country. When it does, game night in America will never be the same.

Bonus Question: If you could have any celebrity film a PSA for you, who would it be and why?
SC: Jane Lynch! On the hit show Glee, Jane plays Sue Sylvester, a wonderfully wicked high-school cheerleading coach. Sue defied expectations when she allowed a sophomore girl with Down syndrome to join the Cheerios squad. It was soon revealed that Sue has a sister with Down syndrome. The close relationship between the sisters exposes Sue’s tenderness and humanity. I believe that Jane Lynch appeals to teens and adults alike and she would be the perfect celeb to promote The Sparkle Effect!

Saturday, August 20, 2011

student with Down syndrome left on bus for 5 hours

Some south suburban officials are calling for the removal of a bus driver who allegedly left a student with Down syndrome on a school bus Tuesday for five hours.

The 19-year-old female student on the Alpha School Bus Co. vehicle was discovered when the bus returned about 1:30 p.m. to a Crestwood terminal.

The student was supposed to arrive at a transition program operated by the Southwest Cook County Cooperative Association for Special Education in Orland Park, school officials said.
The student had apparently drifted to sleep, a relative said.

The student’s grandmother and officials of the Southwest Cook County Cooperative Association and Bremen Community High School District officials want the bus driver removed.

State law requires school bus drivers to walk to the rear of the bus and make a visual sweep, checking for passengers after each route to prevent such incidents.

Crestwood police said the matter still is under investigation.

Bus officials could not be reached for comment.

Friday, August 19, 2011

Lauren Potter with 2011 Do Something Award winner: The Sparkle Effect

from wetpaint:

Cheerleader Becky Jackson (Lauren Potter) is by far one of the most adorable characters on Glee — so we always love it whenever the actress decides to make a public appearance!

On August 14, Lauren popped up in Hollywood as a presenter at the 2011 VH1 Do Something Awards. Afterward, she posed for photos with co-star Jane Lynch (Sue) — who hosted the awards — and 2011 Do Something Award winner Sarah Cronk.

Sarah received the award for creating The Sparkle Effect — a community program that creates opportunities for students with disabilities to participate in cheerleading squads and other sports.

Sounds like something that would be right up Becky and Sue’s alley!

Actress Lauren Potter (L) congratulates Sarah Cronk, the "Do Something Winner", at the end of the Do Something Awards in Los Angeles, California August 14, 2011.

Lauren Potter on the red carpet at the 2011 Do Something Awards

from oceanUP:

An oceanUP Interview with Lauren Potter of GLEE at the 2011 Do Something Awards 8/14 at the Hollywood Palladium.

$30,000 grant to STAR, Inc., Lighting the Way


from Stamford Plus:

The United Way of Coastal Fairfield County has provided a $30,000 grant to STAR, Inc., Lighting the Way… Funds will go to STAR's Birth to Three Services offered at the STAR Rubino Family Center located in Norwalk. Rubino Family Center provides early intervention services designed for children with developmental and health related needs including autism, Down syndrome, significant prematurity and other developmental delays.

"The work we are doing here is so important for families in Mid-Fairfield County. Statistics show that over 35% of the children who receive early intervention services are able to reach their developmental milestones by age three and not require further services. We are so grateful to the United Way of Coastal Fairfield County for their support that helps us continue our work within the community," said Barbara Fitzpatrick, Director of STAR Rubino Family Center.

STAR, Inc., Lighting the Way is a not–for-profit organization serving infants, children and adults with developmental disabilities, as well as providing support services to their families. We create opportunities for individuals to live full lives with independence, freedom of choice and personal growth by providing support, services and advocacy. We inform and encourage the community to recognize and appreciate the value of all individuals. For additional information about the Rubino Family Center at STAR, Inc., Lighting the Way call Director Barbara Fitzpatrick at 203-855-0634 or visit STAR's website at

The United Way of Coastal Fairfield County advances the common good by creating opportunities for a better life for all. They focus on the building blocks for a good life: quality education that leads to a stable job, enough income to support a family through retirement, and good health. To accomplish this, they energize and inspire people to make a difference; reflect the diversity of the communities we serve; act as leader and trusted partner in crafting human care strategies within and across our communities; increase investments in these strategies by expanding and diversifying development efforts and supporting the efforts of others; measure, communicate about, and learn from these efforts.

Thursday, August 18, 2011

Teens run to support siblings with Down syndrome

Brittany and Lindsey Nolan of Elk Grove Village have performed with their sister, Kelsey, in smash hit musicals, from “High School Musical” to “Grease.”

Kelsey has Down syndrome and she has inspired her older sisters to major in special education in college.

Advertisement  Still, on Sunday, they went the extra mile: Brittany and Lindsey Nolan were among seven siblings of teens with Down syndrome to run in the Chicago Rock ’n’ Roll half marathon.

“I’ve never even run a mile before,” concedes Lindsey, 19, before she started training.

Her sister nods in agreement, adding that they encouraged each other and the other siblings to keep up with their workouts.

“I just want to finish,” said Brittany, 21.

They were among 23 runners in all who competed as part of the Angel Endurance Team, raising money for the Schaumburg-based United Parents Support for Down syndrome, or “UPS for DownS.”

The organization offers support, education and encouragement for families that have children with Down syndrome. Their mission is to share their potential and abilities to the wider community.

Other siblings who ran included Adam Reninger, 19, of Schaumburg; Carlos Santillan, 19 of Palatine; Frank Cassata, 17 of Arlington Heights; Samantha Shimanek, 19, of Wood Dale; and Kate Ford, 16, of Orland Park.

When asked if they had ever run a half-marathon before, or even a race, they answer with a resounding, “no.”

Yet, just as resolved were they in pointing to the motivating factor that pushed them to train since last January: their love and admiration for siblings with Down syndrome.

“Our siblings have over come a lot of challenges and obstacles in their lives,” Frank Cassata said. “If they can handle that, we can handle 13 miles. No problem.”

They gathered Friday night with well-wishers at a special pre-race pasta party at the Belvedere Banquets in Elk Grove Village.

During an introduction, each runner was awarded a medal and goody bag from their siblings with Down syndrome: Kelsey Nolan, 17; Allie Reninger, 17; Stephanie Santillan, 11; Cristina Cassata, 15; Jacob Shimanek, 15; and Jack Ford, 18.

All of the teen runners said they had watched other participants honored at previous pasta dinners. This year, they resolved to get in the race themselves.

“I’ve done sibling workshops, volunteered at family events and attended lots of other events with UPS for DownS,” Samantha Shimanek said. “But I’ve never done the endurance team. My goal is to run the whole thing.”

Carlos Santillan, who played soccer at Fremd High School before attending Harper College and now DePaul University, said he never ran more than four or five miles during high school practices.

He and Adam Reninger served as counselors over the summer at Camp Soar, or Special Outdoor Adaptive Recreational experience in Williams Bay, Wis. Together, they ran in the mornings to train for their endurance run.

“I’ve only been a member of UPS for DownS for the last five years,” he said. “But I love what they do and I try to participate in as many things as I can.

“But more than that, I wanted to help out,” he adds. “And this was one thing I could do.”

Wednesday, August 17, 2011

Pro football coach wants special athlete on his team


A high school football player with Down syndrome is being offered the chance of a lifetime.
Brett Bowden has lead the Hobbton Wildcats onto the field religiously for two seasons, even scoring a touchdown in a game. But on Friday night, his helmet sits on a bench and his shoulder pads are put away.

“That's all he knows,” said Pat Bowden, Brett’s mother. “That's all he's ever done. And to take that away? It's different. It's like he's not a player anymore.”

Bowden will be a junior this year at Hobbton High School in Sampson County , but he will not be able to play this season, because at 19, he is too old.

James Terry, coach of the arena football team, the Reno Barons, saw Bowden’s story online. He says it really upset him and wants to give Bowden a chance to be a part of his team.

"The only qualifications in pro football is that you are 18 years of age or older," Reno Baron head coach James Terry said. "We're going to sign him. We'll sign him to a pro football, professional football contract to play at our level which is about AAA."

The Sampson County School District announced yesterday Brett can still dress out and lead the team onto the field, but he will not be allowed to play.

Terry says he wants to give Brett a chance to be a part of his team.

"I have a real opportunity here in the position that I am in football to help somebody who loves the game as much as I do, to really help a family and a young man who can get more from this than I ever did," Terry said. "I played professionally and collegiately, and I envy this kid, because I think he gets more out of being part of this team than any of us could possibly imagine."

Pat Bowden says she could not believe terry's offer.

“To even offer that from a little town that we're from, just a little tiny hole,” said Pat Bowden. “I mean words can't describe it.”

Brett's story has garnered some major attention. A Facebook page that his sister helped organize now has more than 60,000 fans. However, Brett doesn't seem to care about the attention. He wants nothing more than to be a Wildcat.

Tuesday, August 16, 2011

Glee Camp in Farmington Hills, Michigan

These smiling singers give the camera the “Glee” symbol.

They surely "don't stop believin" they're stars.

Or at least that they're on their way to being stars, after some top-notch, special training this week during Glee Camp, featuring songs and choreography from the popular TV series Glee that include classic hits like, Don't Stop Believing by Journey, plus two numbers by Lady Gaga, who was a guest artist on the show last season.

Glee Camp is new this year to the Farmington Hills Special Services Department, Cultural Arts Division, and is happening all week at the Farmington Players Barn. Instructors include professional vocalists Teresa Marbury and Bruce Pooley, who make up the musical duo Rock and Soul, along with award-winning choreographer Toi Banks and choir instructor Brian Christian.

They can see the enthusiasm — and talent — of the 25 kids who are playing Glee for the week.

“They all have voices, it's amazing,” said Marbury, who said the camp is teaching singing, dancing, choir and artist development such as stage presence. “It's in their DNA and we're here to bring it out and hopefully they'll continue to grow. They're already musically inclined.”

One particular Glee Camp student is adding something to the experience by being a participant. He's 23-year-old Danny Friedman, of West Bloomfield, who has Down syndrome. His mother, Linda Friedman, is grateful that they allowed him to join.

“They were so wonderful and so receptive,” she said. “They're angels.”

Doctors told her Danny, three pounds at birth, wouldn't walk or talk. Music has changed all of that. His singing has led to talking, then to writing and reading.

“He's always modeled after others,” she said, including his sister Nina, who loves to sing. They used to have pretend microphones and their fireplace area as their stage.

“You give him a microphone and a big crowd, and he comes alive,” she said.

Linda Friedman said having the other kids learn alongside Danny is beneficial for everyone.

“To have him be included is a win-win situation,” she said. “Because everyone learns. This is a blessing. I can't tell them enough how thankful I am.”

  • Justin Cayal, 11, of Farmington Hills, said he is enjoying the Glee Camp experience.
  • “We're singing all the favorite songs that we like and we're having fun with those songs,” he said. “It's amazing.”
  • Emily Carroll, 12, of Farmington Hills, is taking the experience to heart.
  • “I'm so happy about being able to do this,” she said. “I want to become a famous singer.”
  • Working in the Glee factor into such a day camp is a great combo, according to Chloe Grisa, 12, of Livonia, who someday wants to perform on Broadway.
  • “It's been really fun. Considering how much I love Glee, it's been even more fun,” she said. “People say I am just like Rachel from Glee.”
  • She was sporting a Rachel-esque outfit that included a plaid skirt.
  • Izzy Alo, 11, of Bloomfield Hills, said the Glee Camp will also help her achieve her dreams of musical performance.
  • “It makes me feel more confident about singing in front of people,” she said. “And I love Glee.”
"Their shadows searching in the night," sings Satyam Joseph, a line from Journey's "Don't Stop Believing."

They surely “don't stop believin''' they're stars.

Monday, August 15, 2011

“Inspirational” Brogan highlighted as a role model in government report

Brogan Johnston, who has Down's Syndrome, has been singled out as a role model in a report to the government intended to encourage people with disabilities into employment. She works 30 hours a week as a post room porter at the Norfolk and Norwich University Hospital 
Photo by Simon Finlay

from EDP24:

A young Fakenham woman with Down’s Syndrome has been singled out as a role model in a report to the government intended to encourage people with disabilities into employment.

Every Sunday Brogan Johnston, 22, is buzzing with excitement in anticipation of starting a new working week.

She works 30 hours a week as a post room porter and Norfolk and Norwich University Hospital and her positive attitude led to her being invited to Whitehall, London to record a short video which is now on the website YouTube.

The 1min 58sec clip was recorded at Caxton House in June and in it Miss Johnston talks about her duties at work and how she secured it through Project Search.

Miss Johnston said: “I love my job. It is my dream job. I really like the people I work with and I enjoy being part of a team.”

Her final words on the video are: “I am keeping my job forever.”

Miss Johnston’s story appears among others in a report called the Sayce Review, carried out by Liz Sayce, the chief executive of RADAR, the UK’s largest disability organisation.

Miss Johnston attended Fakenham Junior School, Fakenham High School and Fakenham College. She then completed a two-year catering course at City College, Norwich and finished the one-year Project Search programme in August last year.

This was done through City College and carried out at Norfolk and Norwich University Hospital with support from Norfolk County Council, Remploy, and Serco.

Project Search works by having a college tutor and job coach running a year-long programme of work training for 12 people.

Through this Miss Johnston carried out an internship, performing three different jobs at the hospital, one per term, working in the post room, reception and ward catering before securing her paid job in the post room which she started on August 27 last year.

The project also identified her strengths and weaknesses, highlighting her polite, friendly nature, excellent reading and writing abilities and good memory and she was also given training on CV writing and interview techniques.

Miss Johnston, who lives on The Drift with her mother and father Vanessa and Paris Johnston and two sisters Amber, 20, and Saskia, 17, was asked to go to London after she was seen in a newspaper article in April.

The article reported on how City College, Norwich received an award for its work to get people with disabilities into work and Miss Johnston was highlighted in it as a success story of Project Search.

Mrs Johnston said: “When the telephone call came saying Brogan had got the job we screamed, we laughed, we cried, we hugged and we jumped around.

“Brogan loves her job, she has a great passion for it and she really is an inspiration to others with disabilities because she shows them what can be done with the right attitude and support. I am so proud of her.

“She has regular performance reviews and each one so far has said that she is doing a wonderful job.

“She has one coming up soon and she has written in her form that she wants her boss’s job in the post room.”

Stevie Read, practice development nurse an project search liaison, said: “People with disabilities make a valuable contribution to the Norfolk and Norwich University Hospital workforce.

“Removing some of the barriers they face when getting into employment benefits the hospital, all members of staff and patients.

“People with learning disabilities have the same aspirations to work as everyone else and as major employers we have a responsibility to help them to reach their goals.”

The Sayce Review, called Getting in, Staying in and Getting on, looked at how money is spent to help disabled people into work.

It found disabled people have the same aspirations as all people and the money the government spends should help them into mainstream jobs.

The review makes a number of recommendations which are being considered by the Department of Work and Pensions which launched a public consultation on them last month.

Sunday, August 14, 2011

upcoming drama "American Horror Story" includes an actress with Down syndrome

from the Chicago Tribune:

I haven't seen the pilot of FX's upcoming drama "American Horror Story," but the series of video "clues" about the story and some of its characters has me anticipating the thriller even more.

It looks pretty strange.

"American Horror Story," premiering Oct. 5, comes from "Glee" creators Ryan Murphy and Brad Falchuk. But I'm guessing it'll get freaky like their earlier FX series, "Nip/Tuck," did. Check out the videos above and let me know if you agree.

The first video, or clue, is title "Cello" and as you can see, shows a leater clad person playing a woman as if she were a cello. According to FX, "this mind-bending clue introduces you to two unique series characters and their rather unusual relationship."

Clue No. 2, called "Baby," shows a doll. Or is it a baby, as FX asks? Is the meaning in the familiar tune?
I'll add more clues as FX releases them. If you have an idea about what the clues reveal, you can tweet with the hashtag #ahsfx. The show's Facebook page is Facebook/American Horror Story.

Here's what I know about the series:

It centers on Ben Harmon (Dylan McDermott), a therapist who moves with his wife, Vivien, (Connie Britton) and their daughter, Violet (Taissa Farmiga), from Boston to San Francisco--and into a haunted house--in an attempt to rebuild their lives after a miscarriage and affair. Frances Conroy plays their housekeeper, Moira, while Alexandra Breckenridge stars as a younger version of the same character.

Oscar winner Jessica Lange stars as Constance, who lives next door with a daughter who has Down Syndrome. She seems to know a lot about the Harmon house. Denis O'Hare plays Larry Harvey, "the Burnt Man," a former resident of the house Evan Peters is Tate Langdon, one of Ben's patients.

I'm ready to get freaky.

Friday, August 12, 2011

Largest Prenatal Medical Outreach Campaign about Down Syndrome in US History


Thanks to generous funding by the National Down Syndrome Society (NDSS) and the Joseph P Kennedy Foundation, last week Lettercase successfully completed the largest and most credible prenatal medical outreach campaign about Down syndrome in the US.

Over the past six months, 10,000 copies of "Understanding a Down Syndrome Diagnosis" have been distributed to legislators, university leaders, Down syndrome community leaders, and medical professionals nationwide, including over 4100 booklets to practicing OB/GYNs and more than 4000 booklets to all genetic counselors and medical geneticists in the country.

The booklets represent a historic agreement between the medical and disability communities because they were created with input from the Down Syndrome Consensus Group, which includes experts from the National Society of Genetic Counselors (NSGC), the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Congress, and NDSS.

The booklets have already begun to impact society in the short time since their release. In fact the booklets were featured in the Washington Post, "On Parenting" blog by Allison Wohl, and they have been included as a recommended resource in the published NSGC guidelines on how genetic counselors should communicate a prenatal diagnosis of Down syndrome.

Lettercase CEO and the booklet author, Stephanie Meredith, says, "One expectant mother from Boston who received the Lettercase booklet told us she initially 'felt like she was drowning' after learning about a prenatal Down syndrome diagnosis, but then receiving the booklet felt like she was being 'thrown a lifeline.' These patients learning about a diagnosis are entitled to appropriate support and the up-to-date and balanced information that our booklets offer."

According to Madeleine Will, Director of the NDSS Policy Center, “Even though NDSS, Lettercase, and the Kennedy Foundation have collectively made tremendous strides in the effort to provide prenatal Down syndrome education resources, there is still much work to be done. With more advanced prenatal blood tests on the horizon for 2011 or 2012 and thousands more medical providers who need resources, advocacy for the importance of patient resources and securing additional copies for providers is critical.”

Thursday, August 11, 2011

vote for Reece’s Rainbow in the Classy Awards

In only 5 years, Reece’s Rainbow has found  “forever families” for more than 500+ orphans with Down syndrome and other special needs….*entirely* in the cyber world and through the exclusive use of social media.

Our website, parent blogs, Facebook, Twitter, and our new Iphone Apps have completely changed the dynamics of this ministry and our ability to raise awareness for these children!

FIVE HUNDRED CHILDREN are home and living the life they deserve to live, while 500 more are still waiting on our site.

Winning the Classy Awards will bring tremendous awareness and exposure for the rest of our waiting children and adopting families, who are all in need of grant donations. As we go into Buddy Walk season and our Christmas Angel Tree Project, this visibility will be critical to that life-saving success in 2011. Reece’s Rainbow is not just a charity…we have grown into a  movement that visually shares the blessing of Down syndrome and special needs across the DS community in the US and worldwide. Each and every adoption makes a global statement…proof of the potential and value of these children…evidence of what families will be missing out on if they terminate their pregnancies…

The need is great, but the opportunity to serve and change the world is even greater…and ACHIEVABLE….with your vote

Please pass on, post on your Facebook and blogs, we only have 3 short weeks of voting left and a monumental opportunity to raise RR to the next level!

Wednesday, August 10, 2011

Bowden can still be part of the team


from Fay Observer:

N.C. High School Athletic Association commissioner Davis Whitfield issued a statement Wednesday concerning the football future of 19-year-old Brett Bowden, a Hobbton student who has Down syndrome and is now over the age limit for participation.

"I want to be clear that the student-athlete has not been 'kicked off the team,' " Whitfield said. "Brett Bowden could still be a part of the team, lead his team on the field, wear his jersey and be with his teammates, including some of the postgame activities he has done in the past.

"The only thing that he cannot do now that he could do before is dress out in full uniform, since a student must be eligible to be dressed for a contest. He is over the age limit based on the eligibility rules, and this State Board of Education policy is one we are not allowed to set aside."

Bowden, a rising junior, dressed out in full uniform with pads each of the last two seasons and even ran for a game-ending touchdown last year thanks to the cooperation of coaches from rival Midway. After each game, offensive and defensive players from Hobbton line up near an end zone for one final snap that features a handoff to Bowden, who runs the ball in for a touchdown.

NCHSAA schools abide by a rule that says student-athletes who turn 19 on or before Aug. 31 are ineligible to play. As of 8 p.m. Wednesday night, there were nearly 23,000 fans of the Facebook page "Let Brett Bowden Play." Bowden turned 19 in May.

"I understand the rules," said Pat Bowden, Brett's mother. "We understand that. We're not asking for him to get on that field and play. All we wanted was things to stay like they were, exercise and just enjoy the game."

Bowden will still be able to do most of what he did before, only without pads and a helmet.

from WWAY TV3:
VIDEO: Age rule ends special athlete's football career | WWAY NewsChannel 3


from NC Prep Report:

For the past two years, Brett Bowden has suited up for every practice with HobbtonHigh School's varsity football team, and although he doesn't play in the games, he's always on the sideline cheering on his teammates.
His teammates even let him run a touchdown play after every game.
But Brett recently turned 19, and the North Carolina High School Athletic Association says he is no longer eligible to suit up because he is too old. Allowing him to do so, Hobbton High athletics administrators say, is a violation of state rules.
"When I found out, I was heartbroken. I mean, the tears were just flowing," Brett's mother, Pat Bowden, said Monday. "It means a lot for him just to stand there and be a part of them, just like them."
A spokesman for the NCHAA says it undersntads and appreciates the community support for Brett but that there's nothing that can be done. He can continue wearing a team jersey and sitting on the sideline, but he can't suit up or play.
Brett's family and friends have gone online in an effort to bring attention to the story.
Since starting a Facebook page last Friday, more than 1,200 people have rallied behind Brett, expressing their desires that he be allowed to continue suiting up.
"What they are doing to Brett is so unfair," one person wrote on the page. "The presence of Brett (on) the team teaches a big lesson to the community and teammates. LET HIM PLAY."
"The whole NCHSAA should be utterly ashamed of themselves for being so inconsiderate to someone that just wants to be a part of something!" another person wrote.
Pat Bowden says her son still doesn't know that he's no longer allowed to put on the uniform.
Family and friend are hoping that there is still a chance that the NCHSAA will make an exception before the team's first scrimmage next week.
If not, Pat Bowden says, she will have to explain to Brett why he can't wear his uniform.
Brett has a close relationship to the team, his mother says, and the news that he can no longer participate in practices has been difficult for them, too.
"They're his family," Pat Bowden said. "They're his brothers, his best friends."
"It literally breaks my heart," said Charles Chestnutt, Brett's teammate and close friend.
The Hobbton High football team is still reeling from the loss last year of its starting quarterback, Brad Evans, who committed suicide.
Brett has worn Evans' number on his helmet, and other players say that he has helped them heal.
"He's just been my buddy. He's been my inspiration – one of the reasons I keep doing what I do every day, playing football," Chestnutt said.