Archive for May, 2007

A night to remember

Young adults with Down syndrome find acceptance at a prom of their own By Katya Cengel kcengel@courier-journal.com
The Courier-Journal - Louisville, Kentucky

After eight thumb-wrestling matches and five glasses of water, 13-year-old Ryan Esselman took a break. And asked for another glass of water.

“When he gets nervous, he starts to drink water,” said his sister, and thumb-wrestling opponent, Laura Esselman, 16.

Ryan had reason to be nervous. It was his first prom, and he had asked his big sister to keep him company. While inviting your sister to the prom might guarantee you an empty table in some circles, at the Joy Prom last weekend no one stared.That’s because the party guests were not high school seniors celebrating their last big bash before college, but people with Down syndrome from Louisville and the surrounding area enjoying a rare moment of acceptance.

“So many of these kids are marginalized,” said Garry Gupton, father of 17-year-old Grant, who has Down syndrome. “Here they can just be themselves, they don’t have to worry about fitting in or what other people are going to think.”

Before the dance Saturday night, the partygoers primped and prepped in the multipurpose room at Down Syndrome of Louisville on Bardstown Road. There was crying, sulking and excitement as the young men got their hair gelled and shoes shined and the women got their makeup, nails and hair done.

Ashley Hatcher entered the chaotic room in a floor-length, shimmering blue dress, a silver throw on her shoulders.

“Want some curls in your hair?” asked her mother, Pat Hatcher.

Ashley, 22, gave her a look. “Just go,” she said.

‘Night With the stars’Many young adults with Down syndrome attend their high school proms, but Joy Prom was an alternative for those who might not feel comfortable doing so, said Diana Merzweiler, executive director of Down Syndrome of Louisville.

The nonprofit, which provides social, educational and support services for the local Down syndrome community, has held dances before, but never a prom, said Merzweiler.

The idea came from Brandon Shields, high school pastor at Highview Baptist Church Fegenbush Campus. Shields had heard about a similar event at a church in North Carolina and decided to have the 40 or so students who make up the church’s junior class and their parents take it on.

With $500 from the church, plenty of donations and the help of Down Syndrome of Louisville, the students and parents managed to throw “A Night With the Stars” at the church’s East Campus on Shelbyville Road. It came complete with a red carpet, movie-themed decorations, a tour bus for shuttling partygoers, a DJ and plenty of pizza rolls.

“We have several families in our church who have students with Down syndrome and other mental challenges, and we wanted to put on something that would be done with excellence, that would be really nice,” Shields said.

One of those students is Emily McCullum, 21, who attended the prom and whose brother Kevan, 17, helped get the partygoers ready for the evening.

At one point Daniel Nolteneyer held out his boutonniere to Kevan and asked, “Can you help me put it on?”

Kevan looked around the room, then turned back slowly to Daniel, a 25-year-old greeter at Wal-Mart.

“Actually, I have no idea how to do it,” Kevan said. “You might want to ask, like, a female.”

A junior at Whitefield Academy, Kevan has yet to attend his own prom. Sister Emily attended hers at Jeffersontown High School several years ago, but this night, said Kevan, gave her a chance to hang out with more of her friends from the church and Down Syndrome of Louisville.

Emily sat patiently while she had her hair done in what she called a “J.Lo,” because it resembled how Jennifer Lopez wore her hair in the 2002 movie “Maid in Manhattan.”

Grant Gupton wasn’t nearly as composed. It was his first prom and he paced back and forth in his tux, waiting for his date.

“He’s prancing like an expectant groom,” commented his father, Garry, director of communications at Highview Baptist.

Grant’s date, Amber Taylor, 22, dressed in a floor-length white gown, looked like a blushing bride.

Connor Dawson, meanwhile, went stag, but managed to pull a group of pretty female volunteers into his corner with a show of one-armed cartwheels.

By the time the tour bus arrived to take the 40 or so partygoers to the church, the 14-year-old had secured a date — all of them.

Let the dancing beginAfter walking the red carpet in front of the church, the prom guests came to a long, dim hall leading to the basement, where the dance was held. It was there that 17-year-old Alex Embry stopped.

Standing to the side, he stared at a piece of paper with his parents’ names and phone numbers on it. He had come all the way from Bowling Green, Ky., for the dance, but was too shy to enter on his own. Kim Lemons-Faulkner, a hairstylist who helped get the young women ready, ushered him the rest of the way.

Inside, ABBA’s “Dancing Queen” was blasting, and Amber, her shoes off, was on the dance floor. A few minutes later, when the Village People’s “Y.M.C.A.” came on, almost everyone else joined her as she led a train of her friends and Highland Baptist teens around the room.

While the other volunteers danced, Edward Smith, 17, played DJ with his father, Lawrence Smith.

“Me, all the time I go to parties, dances and formals and stuff,” Edward said. “This might only happen for them once in their lives, so it literally is a once-in-a-lifetime type thing.”

Ian Mauney had plenty of chances to party in high school. He still remembers the limo he took to the prom more than seven years ago with “all my friends,” members of the Fern Creek High School football team on which he was a kicker.

Now, “if it was not for the Down Syndrome of Louisville events and that of family, his social calendar would be at a standstill,” said his mother, Carolyn Mauney, who picked him up later that night.

Marc Freeman never made it to his Eastern High School prom.

“Nobody asked me, as cute as I am,” said Marc, who’s 31.

At the Joy Prom, he showed off the break-dancing moves he never got to use. The party was a chance for him “to be accepted rather than an outsider,” said his mother, Jary Freeman.

She was impressed with how much the party looked like a prom, with decorative yellow stars hanging from the ceiling, strobe lighting, and Greek columns for the photos.

And it felt like a prom, too, with drama — a girl upset because her boyfriend danced with another girl — and humor — Mark Hublar, 42, in a white suit, wisecracking, “I thought I died and went to babe heaven.”

“I look like John Travolta, although I know I’m not,” Hublar said of his outfit, which included a sparkling blue bow tie and vest.

A few renditions of “Y.M.C.A.” later, Edward paused amid his DJ duties to reflect on the scene.

“You will find more genuine people here than you will find in most high schools,” he said.

And, he added, more gentlemanly behavior.

Volunteer Sarah Raley, 16, was charmed when the cartwheeling Connor asked her to dance.

“He kneeled down, kissed my hand and said, ‘Do you want to dance?’ ” she said.

Daniel Nolteneyer also got down on his knee for his date, Ashley Hatcher. When it was all over he walked her out, her arm hooked in the crook of his.

“She’s beautiful,” he said. “She reminds me of a movie star.”

Reporter Katya Cengel can be reached at (502) 582-4224.

Great pictures from the evening can be found here!


Please vote for Chickahominy Fire Station!

Please vote!! - Click here for complete story, it will touch your heart!

We have the great opportunity to support a fire station for their work with a person with Down’s Syndrome. Station 10 of the Hanover County, VA Fire Department (Chickahominy) is a finalist in the Firedog Across America contest, sponsored by Circuit City.

They were named a finalist out of over 5,100 entrants, specifically for their work with a gentleman in the community who has Down Syndrome. The members have taken him in as an associate member of the station, and it has done wonders for both him and the firefighters.

Between now and May 13th, people will have the chance to vote for which finalist they like the best. Every vote earns a $1 donation from Circuit City to that station, and the firehouse with the most votes receives an additional $100,000.Station 10 is currently in 2nd place in the voting, and needs our help to win the Grand Prize.

The link to vote for the station is attached. You can watch the short video and read the essay that was submitted to get a feel for the impact they’ve had on the community. It is a true inspiration.

http://web.firedog.com/acrossamerica/finalist.aspx?fi=6

They are finalist #6. After voting, you will receive a confirmation email from Firedog. Be sure to click on it to confirm your vote.

We are trying to get the word out to as many people as possible, so after voting please forward this to your networks of friends and family, and support this most worthy cause.


Hearing Loss…

We had Elly’s post-op appointment on Thursday. Her throat is healing fine from her T/A but her perforated ear drums are not healing. The ENT will not consider repairing the ear drums until she is at least 4 - 6 years old. A hearing test showed her hearing at about 40 dB - clearly not adequate for speech/language or education.

Another hearing test today at Children’s Hospital reinforced last Thursdays VRA (Visual Reinforcement Audiometry). She had results ranging from 35-45 dB with most frequencies around 40 dB. This means hearing aides. They were not able to get individual ear results as Elly would not leave the inserts in. By the time they got around to that part of the test, she was done and tired of it all. They decided that they would prefer some individual ear information before setting hearing aides so we have scheduled her for a sedated ABR and ear mold prep next Monday. This will also give us more information as to whether or not her hearing loss is primarily conductive or mixed. (That info may also make a difference in funding) When the ear molds come back she will be fit with loaner hearing aides (through the U of MN) until we can figure out the funding. She can use the loaners for up to 6 months.

Funding is imporant, as a preliminary call to insurance on Friday indicated that we have no coverage for hearing aides………how can that be? We are busy filling out paperwork and looking into other potential options.

We were kind of taken by surprise, but want to provide her with what she needs to develop to her potential. We are shocked by the degree of loss that she has (I wouldn’t have guessed Moderate) and are bummed that she will need to undergo sedation again, but we are pleased that we know about this and have a chance to intervene. Hopefully, she can begin hearing things adequately for speech/language and educational purposes soon. I hope it won’t be difficult to get her to leave the hearing aides in. Keep us in your prayers.


Featuring Elly…….and Tarenne!

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My dear friend Nicole from T21 online has decided to feature friends with Down syndrome on her blog All 4 My Gals during her weekly advocacy posts. This week she has chosen Elly and we are so honored. Nicole was one of my earliest inspirations as I was waiting for Elly to learn to nurse and more recently she has supported my blogging efforts. We have spoken on the phone and have had an online relationship since the beginning! I can’t wait to meet her in person some day. Nicole’s beautiful daughter, Tarenne, also has Down syndrome and her blog is a wonderful place where she is a fearless advocate. She honestly chronicles her love for all 4 of her daughters and her husband and is a wonderful Christain woman. I encourage you to visit her site and say “Hi”. Check out her post about Elly - here. Below are some gorgous pictures of Tarenne and Nicole!