Tuesday, January 31, 2012

Research Down Syndrome enters second year of national running program

from News Medical:

Research Down Syndrome (RDS), a nonprofit foundation that is among the leading sources for funding of Down syndrome related cognitive research, is entering the second year of its national running program, Race for the Extraordinary, to help increase public awareness and funding for Down syndrome research.  The mission of RDS is the development of safe and effective therapies to address the intellectual difficulties associated with Down syndrome.
Building on successful marathon and other race events during 2011 in major cities, including New York City, Chicago and San Diego, RDS is expanding its running program to greatly increase its research funding, and has been accepted as a charity partner in multiple marathons across the country. Shorter fun races are being organized as well.  "We are grateful for the enthusiastic support we received in events during 2011," states Dr. Robert Schoen, RDS President, "Our goal is to support persons with Down syndrome by significantly increasing our fundraising in 2012."

Advances in Down syndrome research have led to such progress as the recent initiation by Roche Pharmaceuticals of a Phase 1 clinical trial to investigate the safety and tolerability of a molecule designed to address the cognitive and behavioral deficits associated with Down syndrome. The RDS Race for the Extraordinary initiative will add increased support for such research.

In recent decades, improved health care, expanded education and community opportunities, and the support of families and advocacy groups has improved the quality of life for individuals with Down syndrome.  As a result, Dr. Schoen notes, "Over the past 30 years, the life expectancy of those with Down syndrome has more than doubled -- underscoring the importance of development of treatments that will assist this population to achieve and maintain independent living."

Adults With Down Syndrome Can Live Independently And Have A Satisfying Life

from WebWire:

Adults with Down syndrome are more able than ever to live independent lives. A detailed transition plan developed early in a child’s school years can be the key to success.

Many parents worry that their children with Down syndrome will never be able to be self-sufficient. But that is not necessarily the case. According to author Craig Kendall, "Young adults with Down syndrome can work. They often live on their own with some help, and some even get married. A transition plan can make all the difference" The best time for parents to develop a transition plan is before their loved one leaves school.

According to Craig Kendall, co-author of "How to Live, Love and Succeed with Down Syndrome" parents should develop a transition plan a year or so before their your loved one leaves school. Every person with Down syndrome is different, of course, so no two life courses will be the same. Kendall recommends that at least a year before a child is getting ready to leave school, the parents meet with school officials and try to develop a transition plan for them.

"You will want to consider several things" says Kendall. "Do you think your child is able to work? Young adults with Down syndrome can hold a variety of jobs, for example, working in restaurants" The article How to Live Independently and Have a Satisfying Life for Adults With Down Syndrome, states that many Down syndrome adults lead an independent life; and new types of jobs are creating opportunities that never existed before. According to the web site http://www.downsyndromehope.com/, living life independently is possible as long as parents follow some basic steps.

Friday, January 27, 2012

Chris Wragge honored at the NDSS Gala & Auction

from Celebrity Circuit by Camille Mann:

(CBS) WCBS-TV anchor Chris Wragge will be honored at the 26th Annual National Down Syndrome Society Gala & Auction February 9th.

NDSS chose to honor Wragge for his longtime support of the organization and say that he embodies its mission of promoting the value, acceptance and inclusion of people with Down syndrome.

Actor Chris Burke, who played Corky on the TV series "Life Goes On," will present Wragge with his award.
Wragge was named NDSS Media Ambassador in 2007 and has served as the Master of Ceremonies at the New York City Buddy Walk and other events in the New York City area.

NDSS is a nonprofit organization representing the more than 400,000 Americans with Down syndrome, and it serves as an advocate for the value, acceptance and inclusion of people with Down syndrome.

Thursday, January 26, 2012

cheerleading, teamwork and respect

from Particularly Perfect:

The spirit, joy and enthusiasm on the team is beyond contagious.  When they smile, you smile.  When they cheer, you cheer.  It is a team of kids with special needs...accompanied by "typical" middle and high school cheerleaders that work with the team because they want to.  Giving up an hour or two every week to practice.  Sending a message of acceptance to all of those around them...it's a beautiful thing.  I am so grateful for the coach who opens the gym to our team and the kids that work with Kayla and her friends.

This past weekend was their first competition.  They were the first to take the floor...and the only team of athletes with special needs.

Go Wings!

When their routine was over and the crowd was moved to their feet {the one and only time that day}, I couldn't control the tears.  They were tears of happiness, of course.  Tears of pride.  Tears because my girl and her friends got the one thing that I want for her in life...RESPECT.  The crowd respected them.  The judges respected them.  The other cheerleaders respected them.

Sunday we delivered a message.  In a world of "typical" cheerleading squads...people with disabilities can compete, too.  People with disabilities can cheer, have fun, laugh...and just be "typical" kids.

They can be exactly who they were meant to be...perfect just the way they are.  I mean seriously...at the end of the day does it really matter if you land a jump perfectly or dance right to the beat or remember every step of the routine?  Are those the things in life we remember from childhood?  No.  It's the memories.  The memories of having fun.   Life should be one big hot fudge sundae filled with scoops of happiness, drizzled with love, dollops of laughter and sprinkled with friendship.   But to me, the cherry on the top...the one thing that will make the sundae perfect...will always be respect.

Wednesday, January 25, 2012

23 year old with Down syndrome will serve in the Israeli Army

Elad Gevandschnaider, 23 years old, was born with Down syndrome. Because of his disability Elad, is not required to serve in the Israeli Army, still, he decided to volunteer. It started with two years of national service in a primary school in the southern part of Israel, Beer Sheva, and now Elad has just learned he has been accepted to serve two more years at an Israeli army equipment base. As a volunteer soldier, Elad has dreamed of the day when he would be able to wear a real soldier’s uniform and serve his country. Talk to Elad and he will tell you that the primary reason he has been able to do something that no other special needs person has done in the history of Israel, and he will tell you the story of his love for tennis and how the Israel Tennis Centers have been the focal point of his life for many years.
Elad has been playing tennis for six years. He is the son of immigrants who arrived in Israel in the 1960's: his father is Polish and his mother hails from Morocco. The family lives in Beer Sheva and Elad trains three times a week at the Israel Tennis Center near his home: twice in the Special Tennis Program and once on the Achievement Program where he competes with all the other children. At the end of February, Elad will travel to Florida for three weeks to participate in exhibition matches in order to raise funds for the Israel Tennis Centers ("ITC") and the special needs children programs – marking the first time that a player with special needs will travel to the United States and represent the Tennis Center Foundation in such an event.
In the past year and a half, Elad has made great progress with his tennis. It started at the National Special Olympics tournament which was followed by the European Championships held in Warsaw, Poland in February 2010. Elad, during his first tournament abroad, won the silver medal; it was very emotional for his Polish father, who accompanied him to the tournament. Elad’s father Yossi Gevandschnaider noted that, “When Elad was 17 his physical education teacher suggested he try to play tennis. I didn't even realize that he was talented or that he had any potential for success. His coaches proposed that he start competing in tournaments organized by the Special Olympics organization which works with the ITC. We started traveling to tournaments throughout Israel where Elad achieved some great results."
In June 2011, Elad continued with his international success – this time at the World Games for Special Olympics in Athens, Greece. Four players went out to represent Israel: Elad, Tamir Segal (ITC – Kiryat Shmona) and two Arab children who train at the Tennis Centers in Jerusalem, Muhammad Kunbar and Jafar Tawil. It was the first time that Arab sportsmen represented Israel at an international Special Olympics event and both came from the tennis programs of the Israel Tennis Centers. Elad won the silver medal in singles and in the true spirit of Co-Existence, he won the bronze doubles medal with Muhammad Kunbar.
When they returned to Israel, the athletes attended receptions hosted by the Prime Minister, Benjamin Netanyahu and the President, Shimon Peres. The most emotional moment of the reception with the President came when Elad, who even before the Games in Greece was filmed for a television commercial singing the "Hatikva", was asked by Peres himself to stand and sing it again. Elad stood up and sang the Israeli Anthem in its entirety in front of the whole crowd.
The Israel Tennis Centers Foundation (ITC) (http://www.israeltenniscenters.org/) is a 501 (c) 3 non profit organization that has worked for over 35 years to enhance the social, psychological, and physical development of Israeli youth through the medium of sport. Most of ITC Centers are located in disadvantaged neighborhoods or outlying development towns throughout Israel, from Kiryat Shmona on the Lebanese border in the North to Beer Sheva bordering the Negev Desert in the South.

Thursday, January 19, 2012

Raising a Child with Down Syndrome: Advice and Resources

from Amy Julia Becker:

When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice that I and other parents of children with Down syndrome can offer.

It then includes 8 sections with suggestions within each:
  1. Learn the Facts First
  2. Get In Touch with Other Parents
  3. Organize Relevant Information
  4. Find Good Doctors, Therapists, and Specialists
  5. Put Together Your Village
  6. Remember Your Child is a Child First
  7. Prioritize Communication
  8. Focus on Your Child’s Strengths
Click here to read the whole article on parents.com: How to Raise a Child with Down Syndrome: Advice and Resources.

Tuesday, January 17, 2012

The 2 for 2 thank you video - a must watch

from Kelle Hampton's 2 for 2 Initiative:

Please join us in spreading the word. Every child is important. Every child deserves a promising future.

Help us in our 2 for 2 initiative. $200,000 to support the National Down Syndrome Society in honor of Nella's two sweet years of life. Please share our video and our message--help us raise awareness for a more tolerant society that embraces and celebrates differences.

Visit Nella's 2 for 2 Fund to donate.

Sunday, January 15, 2012

Actor with Down syndrome Peter ten Brink in new Hallmark movie

New movie based on an inspiring true story premieres Sunday, January 29 on ABC

from Hallmark:

John Corbett (Sex and the City, Hallmark Hall of Fame’s November Christmas) plays Michigan high school football coach and special-education teacher Mike Kersjes who helps his special-ed students achieve their impossible dream: to attend Space Camp at the U.S. Space & Rocket Center in Huntsville, Ala. Their inspiring journey – based on a true story – is recounted in a new Hallmark Hall of Fame film, A Smile as Big as the Moon, premiering on ABC Sunday, January 29, 2012, 9-11pm ET/PT.

In the Hallmark Hall of Fame movie, many of the special-ed students are played by young actors who are, themselves, "special." Down syndrome, ADD, autism, dyslexia, etc. – these are real kids with real special needs playing real kids with real special needs.

from Make it Better by MIBS:

Peter ten Brink has been a fixture on the North Shore theater scene since he began acting at age 8.
But now, a national audience will get to know the New Trier High School teen when he appears in the Hallmark Hall of Fame movie “A Smile as Big as the Moon,” airing Jan. 29 on ABC.
Ten Brink plays Ben Schmidt, a high school student with Down syndrome who dreams of someday becoming an astronaut. His teacher, Mike Kersjes (played by John Corbett of "Sex and the City" and "My Big Fat Greek Wedding" fame) is inspired by Ben’s dreams to try to get his class of special education students accepted into NASA’s Space Camp. The movie is based on a true-life account by Kersjes, who wrote a memoir of the same name.
The role came to ten Brink’s attention through the Down Syndrome Association of Los Angeles, which keeps a file of actors with Down syndrome. After finding out he was up for consideration, he took a whirlwind trip to North Carolina around Labor Day to audition. He got the call offering him the part, ten Brink said, while at McDonald’s “waiting for my Chicken Selects.”
“Ben Schmidt had Down syndrome like me. The character wants to go to Space Camp … but Space Camp is really for gifted children, not special needs,” ten Brink said. The story follows the struggles and triumphs of the class as they work toward their goal against all odds.
Ten Brink previously played the lead role in the independent short film “By Any Other Name” and also has a part in the upcoming feature length project “Nightlights,” both by Play On Productions. He got his start acting with Special Gifts Theatre, a Northbrook-based company that features actors with special needs.
He began working with New Trier’s Theatre program while he was still in junior high, landing a role in the school’s production of “The Music Man,” and has participated in New Trier Theatre classes throughout high school.
“Peter ten Brink has been very involved in our Theatre Workshop and Theatre 2: Acting courses,” said New Trier Performing Arts Coordinator Anne James-Noonan. “He is passionate about acting and has been an enthusiastic scene partner to many of our New Trier Theatre students.”
New Trier Theatre teacher Hilerre Kirsch said she has enjoyed ten Brink’s contributions to her classes.
“Peter’s passion for theatre was evident the first time I met him!” Kirsch said. “He was clearly serious about his acting and became a leader in his classes, offering advice and comments that were appreciated by his classmates.”
“A Smile as Big as the Moon” premieres on ABC on Sunday, Jan. 29, from 8-10 p.m. CST. More information about the film, including photos, interviews, and clips, can be found online at www.hhof.tv.

Saturday, January 14, 2012

More about Ryan Langston and other people with Down syndrome in the media

from The Boston Herald by Tenley Woodman:

Before last Tuesday, Ryan Langston was a 6-year-old boy with Down syndrome.

But after his modeling shots in a Target catalog went viral, he’s become a source of inspiration for families with children with disabilities.

“We are very happy and proud that Ryan is being such a wonderful face for kids with Down syndrome and we think he’s a great little ambassador,” Ryan’s mother, Amanda Langston, told the Herald last week from the family’s home in northern New Jersey.
The Langstons — Jim, Amanda and Ryan’s fraternal twin brother, Ian — said they have been overwhelmed with the outpouring of interest and support generated by Dallas-based daddy blogger Rick Smith’s post “Target Is ‘Down’ With Down Syndrome: 5 Things Target Said By Saying Nothing At All.”

Author of http://www.noahsdad.com/, a blog chronicling the life of his 11-month-old son with Down syndrome, Smith said traffic to the site was so heavy he had to get a new server to handle the scores of people posting words of encouragement and sharing stories about loved ones with the disorder on the comment board.

“It validates what we do,” Smith said.

Boston-area parents of children with Down syndrome are overjoyed with the response.

“I almost feel like it is a battle cry received,” said Wendy Agudelo, 42, of North Andover, mother to 6-year-old Abigail.

“With this ad campaign it says, ‘We see that these kids are just the same,’ ” Agudelo said.

Ryan isn’t the only child with Down syndrome making a splash in the modeling world.

Matthew Mammano, 11, of Holbrook, a model with Boston-based Model Club Inc., has appeared in Houghton Mifflin textbooks, special-needs toy catalogs and even on “Sesame Street.”

“He’s a ham. He loves it,” said his mom Michelle Santone. “I wish there was more work for these kids.”

Tim Ayers, director of Model Club, said the industry is becoming more inclusive, but still has a way to go.

“Boston is really conservative in what they do,” Ayers said. “Boston is kind of behind in their mentality in what they are looking for.”

Chelmsford mother Maura Fitzpatrick, 41, was rebuffed by a local agency when she tried to find work for her 9-year-old daughter, Amanda Russo, who has Down syndrome.

“They wrote me back and said they didn’t think there was a market for kids with disabilities. That sent me on a rampage,” Fitzpatrick said.

A Manhattan-based modeling group thought otherwise, and Amanda was chosen for a Parents magazine shoot.

“Toys R Us has always included handicapped kids in their print media. I wish we saw more of it,” Fitzpatrick said.

Friday, January 13, 2012

Patients with Down Syndrome Not Benefitted by Alzheimer's Drug

from Third Age:

Patients with both Down syndrome and Alzheimer’s disease are not benefitted by a popular drug used to treat cognitive decline, a new study shows. According to HealthDay News, researchers from King’s College London found that the brain function of people older than 40 years with Down syndrome was not helped by taking memantine.

The results came as disappointing to researchers, who had been excited about the positive results found in mice with Down syndrome.

To test the effectiveness of memantine, 88 people with Down syndrome received the drug for one year, while another 85 people received a placebo. Some study participants had Alzheimer’s while some did not.

Overall brain function declined in both groups regardless of whether or not they were taking the drug.
In fact, memantine was not only ineffective, it was dangerous. Eleven percent of people in the group that took the medication experienced serious adverse side effects, compared to just seven percent of people in the placebo group. Five people from the memantine group eventually died of these complications.

Still, researchers were pleased that their work would contribute to the ongoing field of study involving Down syndrome and Alzheimer’s. According to HealthDay, the issue is particularly important as nearly 40 percent of people with Down syndrome will be diagnosed with dementia once they pass the age of 60.

“Memantine is not an effective treatment in this group of patients,” said study author Clive Ballard. “We believe that this robust finding will have implications for clinical practice and research strategy in the future. Specifically, therapies that are beneficial for people with Alzheimer’s disease are not necessarily effective for the treatment of cognitive impairment or dementia in the context of Down syndrome.”

Thursday, January 12, 2012

Kelle Hampton's 2 for 2 campaign

from Kelle Hampton's 2 for 2 fundraising page:

Last year, for Nella’s first birthday, we launched Nella’s ONEder Fund with hopes we might be able to raise $15,000. In a matter of three weeks, we raised over $100,000. We will never forget those weeks—how we cried watching our online fundraising page change within minutes and recognizing just how much people care. We were inspired by others’ generosity—most of which came from people we’ve never met, and our family is eternally grateful for how people are willing to join the cause on behalf of Nella and the more than 400,000 other individuals with Down syndrome living in the United States.

We’re not done yet. We’ve been blessed with another fulfilling year, a year in which we’ve continually been thankful for our daughter’s health and milestones. She’s a funny, inquisitive, smart little girl on the brink of two, and we want to celebrate once again by raising money to show the world our kids deserve everything any kid deserves—opportunity, a bright future.

Our goal this year is to raise the roof on our current funds—2 for 2. We hope to raise $200,000 by the time Nella turns two—that is $75,000 more to add to the already generous support from over 5,500 people since October 2010 (our first fundraiser for NDSS). That doesn’t give us a whole lot of time, but we’ve been inspired and astounded by the kindness of others before. We know it can happen again. Please join us in supporting the NDSS, and make a donation to Nella’s 2for2 Fund and, by doing so, help enrich the lives of others. $5, $10—it adds up. We’ve got proof, thanks to you.

Our family sincerely thanks you. Your generosity has inspired us, and we promise to continue our efforts and give back.

The Hampton Family

Wednesday, January 11, 2012

America's Supernanny: Child With Down Syndrome Keeps Leaving House On His Own

Deborah Tillman walked into a pretty tough and scary situation with the Fitzgerald family on "America's Supernanny" (Tue., 9 p.m. EST On Lifetime). She found a father who was so preoccupied with his congregation at church that he was almost an absentee parent. That left stay-at-home mom Jenny completely overwhelmed and feeling defeated at home with four kids.
To make matters more complicated, the Fitzgerald's 8-year old son Garrett has Down syndrome, and Jenny had never really learned how best to communicate and work with her special-needs son.
Tillman was particularly disturbed when she discovered that Garrett has a tendency to run out of the house and head off down the street completely unsupervised. She implemented some visual communication techniques for both Garrett and Jenny, and wrangled Dad into being more involved at home to help get the family headed in the right direction. The changes left Jenny feeling better about herself and her role in her family's life.
Follow Deborah Tillman to new families each week on "America's Supernanny," Tuesdays at 9 p.m. EST on Lifetime.

Tuesday, January 10, 2012

iPad, iPod, iPhone apps for children with Down syndrome

from Touch Autism:

Touch Autism began to build mobile device applications (iPod, iPad, iPhone, and others) for children with autism spectrum disorders, Down syndrome, intellectual disabilities and other special needs after discovering how incredibly useful this type of technology can be.
Some of the many advantages of these apps are that they suit visual learners, they allow for non-verbal and non-written responding, they provide immediate and consistent feedback, and are very motivating, because they are just so much fun!
Touch Autism is a two person team dedicated to making the best technological apps for autism, Down syndrome and other special needs that we can! The Touch Autism Team is comprised of Jenny Winningham, a Board Certified Behavior Analyst and Tomas Krones a Software Engineer. The two of us continuously work toward creating technologies that can help people with autism spectrum disorders, Down syndrome and other intellectual disabilities live independent and productive lives.

  1. Staying Safe and Safer Strangers- A Stranger Danger Social Story for Autism, Down Syndrome & Other Special Need - This app is made up of two community safety social stories. One story focuses on safer strangers and buildings, and the other focuses on what to do if you are lost. 
  2. Calm Counter - Social Story and Anger Management Tool for Autism, Down Syndrome and Special Needs - The app opens up to a "I need a break screen" that vocalizes "I need a break" when it is tapped. The screen then transitions to a red screen with an angry face and the number ten. With each tap the screen transitions to a calmer face and color. In this way, the app prompts the user to count backwards from ten followed by a deep breath. The app also includes a simple social story with line drawings about anger. The social story talks about feeling angry and things you can do, like counting to ten, breathing deeply and taking a break, to calm yourself down. The settings screen allows you to choose from male, female or no vocals for counting back from ten and for reading the social story out loud.
  3. Touch Trainer - Autism & Special Education - The Turn Taker uses visual and/or audio cues to facilitate turn taking and/or sharing in children diagnosed with an autism spectrum disorder, Down syndrome or other special need. This app has also been used successfully with young children, children diagnosed with ADHD, and with any child that finds it difficult to share! 
  4. Divorce Social Story - A Social Story for Children about Divorce – Autism, Down Syndrome and Special Needs - This app is a simple and short social story about diveroce and what it means for a  child. The app uses simple language and graphics to explain that divorce means parents living in separate houses, and that it's ok. 
  5. Turn Taker - Sharing Tool and Social Story for Autism, Down Syndrome and Special Needs - The Turn Taker uses visual and/or audio cues to facilitate turn taking and/or sharing in children diagnosed with an autism spectrum disorder, Down syndrome or other special need. This app has also been used successfully with young children, children diagnosed with ADHD, and with any child that finds it difficult to share!
  6. Preference & Reinforcer Assessment - Autism & Special Education - his Preference (Reinforcer) Assessment app was designed by a BCBA (board certified behavior analyst) to make running a preference (reinforcer) assessment amazingly easy to do, so that anyone can effectively and scientifically determine their child’s or client’s preferences. Reinforcement (Preference) Assessments are an incredibly important procedure in any behavior change program. They are not conducted nearly as often as they should be because they can be difficult to run, or because many parents, caregivers or practitioners have not been sufficiently trained to run them. This app includes such features as descriptions of all of the types of preference assessments, a timer to determine the end of a trial, and specific instructions and visuals to help you set up and run the assessment. Once the assessment is finished the app will automatically calculate the percentage of times each item was selected in which it was available, and will present this info in an easy to read bar graph. The data and graph from each client will be saved on the app, so that the user can easily review results from past assessments.
  7. My Day With WH Words - A Social Story and Speech Tool for Autism, Down Syndrome and Other Special Needs - This app includes a social story about talking about one's day, and a simple visual support for "WH" questions (Who, What, When, Where, Why, How). The story focuses on why it's important to tell people about your day, and what each different WH questions mean.
  8. Potty Training Social Story - Autism, Down Syndrome & Special Needs - This is an interactive story about potty training that is customizable for boys or girls. The app also includes and extensive FAQ page that lists answers written by a board certified behavior analyst to common potty training questions.
  9. Knock Knock Numbers - Autism & Special Education - Knock Knock Numbers was designed by a BCBA as a fun way to teach kids how to tell knock knock jokes, while working on number recognition. The app teaches 20 different jokes and each one prompts the user to identify a number between one and ten.
  10. Conversation Social Stories and Simple PECS Communication Tool - Autism, Down Syndrome & Special Needs - This app is made up of four social stories about different conversational skills and simple communication tools to go with them. The stories focus on greetings, asking someone to play, what to talk about in a conversation and tips for great conversations. 
  11. Autism Apps - Autism Apps is simply a comprehensive list of apps that are being used with and by people diagnosed with autism, Down syndrome and other special needs. It also includes links to any available information that can be found for each app. The Apps are also separated into over 30 categories, and the descriptions are all searchable, so any type of app is easy to find and download.
  12. Touch Tutorial - Elderly, Autism & Special Education - Touch Tutorial was designed by a BCBA (Board Certified Behavior Analyst) to teach users with little to no experience with new technology how to use touchscreens. Touchscreens, like those found on ipads, iphones, ipod touches or other devices, are being used more and more frequently in every day society. This application uses easy to understand language and icons to teach foundational skills and then builds on these skills so that the user learns many of the common gestures necessary to operate a touchscreen device. Also see Touch Tutorial Lite - Autism, Special Education & Elderly 

Monday, January 9, 2012

Plumbing company donating portion of profits to NDSS

from Green Bay Press Gazette:

Precision Plumbing LLC of Crivitz is donating 5 percent of its profits from December, January and February to the National Down Syndrome Society.

The company is owned and operated by John Hensley of Crivitz.

He is married to Lora, formerly of Coleman, who has a 10-year-old daughter, Mackenzie, who was born with Down's Syndrome.

The total amount donated each month will be noted on Precision Plumbing's website and on their Facebook page.

Hensley started Precision Plumbing in April 2011 after acquiring his Master Plumber's license.

Sunday, January 8, 2012

Girl Scout rides float in Rose Bowl Parade

from Manhattan Beach Patch by Ann Louise Bannan:

Waving to all of the people who lined the five-mile-plus Tournament of Roses Parade route was pretty tiring, but Caley Versfelt, of Manhattan Beach, found a way to make it work.
"I put my arm down, then I put it back up," she said.

Versfelt, age 20, who has Down Syndrome, was one of 10 young women and girls chosen to represent the different levels of Girl Scouting on the flower be-decked float that was part of yesterday's big parade. Each float rider was selected based on their Girl Scout history, accomplishments and achievements in community service, according to a Girl Scout website.
Filled with images of scouting and its activities, from robotics to the famous cookies, the float, which celebrates the Girl Scouts of America's 100-year anniversary, was accompanied by 60 Gold and Silver Girl Scouts and a color guard.

Versfelt first joined the Girl Scouts when she was in kindergarten for the reason many girls do - to make friends.

"It was a welcoming group for her," Shail Versfelt, Caley's mom, told Manhattan Beach Patch, noting that her daughter tended to do well in organized groups.

When the family moved to Manhattan Beach, they found Troop #277, and Caley went on to earn her Silver and Gold Awards - comparable to the Eagle Award in Boy Scouts.

Scouting has been a good fit for Caley, said her mom, stretching Caley beyond what she might have otherwise accomplished. In fact, says Versfelt, from early on Carley seemed to try harder when she was with other scouts than she would when with her family only.

Last February, Caley traveled with Girl Scouts to Puerto Rico, without her family.

"I was really scared at first," she said, adding that once she'd had the experience, "It inspired me to travel more."

For sure, Caley's good works don't begin and end with the Girl Scouts. She has mentored children and adults with special needs and raises funds for The Friendship Circle, an organization that helps children with special needs find friends and participate in activities. She also attends UCLA through the university's GenerationNeXt program.

Indeed, Caley is always up for a challenge. For Caley, the challenge of the Rose Parade was seeing all the people lining the parade route, which was, she told MB Patch, a little scary. The weather was notable, too, she said.

"It was cold in the beginning," she recalled of parade day. "Then in the middle, it was warming up and I was sweating."

Would she ride a float again? You bet!

"I really enjoyed it," she said.

Saturday, January 7, 2012

three teens created the dance troupe The Huggables

from Morris Daily Herald by Kris Stadalsky:

When Olivia Longo or Hanna Pottinger perform an arabesque in dance class, a sense of accomplishment and pride can be seen on their faces, as well as their parents’ and instructors’ faces.

A group of dance students, who all have Down Syndrome, are learning ballet, jazz and even hip hop thanks to three teens who created the dance troupe The Huggables.

Carley Serena, Kelsie Chasten and Julia Malinowski, best friends for years and now seniors at Joliet Catholic Academy, started The Huggables this summer to give young girls with disabilities an opportunity they hadn’t had before.

“We tried soccer and other sports,” said Hanna’s dad, Kurt Pottinger. “This type of activity is perfect. They all get a chance to participate all the time. She wants me to watch, she loves it.”

The instructors’ desire to create the class stems from their love of dance, children and wanting to help others.

Helping others less fortunate is something all three come by naturally. The teens watched  their mothers, who are also good friends, help those in need through the organization they created, Shorewood H.U.G.S. (Helping You Get Started).

Although H.U.G.S. runs out of Shorewood, the non-profit organization grants wishes to families in need all over the area.  Serena and Malinowski live in Shorewood, while Chasten lives in Channahon.

The teens have been volunteering for H.U.G.S  since the eighth grade, helping out at fundraisers and other events. It was through helping one family whose child has Down Syndrome that the teen dancers came up with the idea for The Huggables.

“We saw our parents grant wishes through H.U.G.S. and we asked how could we do something,” said Serena. “It evolved from that.”

The program was started this past summer with just a few dancers. Now it has grown to include eight young girls. Serena, Chasten and Malinowski have seen their students’ abilities grow by leaps and bounds.

“It’s amazing what they learned from the first day,” Malinowski said.

The instructors have a great rapport with their students. Once they put on their red tutus, the students are almost magically transformed, happily and ambitiously doing whatever is asked of them.

“The leaders are really great with them,” Pottinger said. “They are phenomenal with the girls.”

Autum Longo’s first day in class didn’t start out exactly as planned, said the teens.

At first Autum sat on the sidelines with her parents, keeping her head down. The instructors encouraged her to join in, but she kept refusing.

Suddenly Autum changed her mind and joined the class. Not only did she follow along perfectly, she had been watching and learning the steps the entire time. She knew exactly what to do. Now she loves coming to class every Sunday.

“Now she knows everything, she’s awesome,” said Chasten.

The dance class is held every Sunday at Nouveau Dance Company in Plainfield. Owner Lindy Wade was gracious enough to donate space in her studio for the program.

Christine Longo brings daughter Olivia all the way from Chicago Heights every week.

“She looks forward to it,” Longo said. “There’s not a lot of opportunities for her to be with her peers. It has helped her to develop friendships with kids with similar disabilities.”

All three of the instructors will be focusing on child-related studies when they go to college next fall.

Malinowski intends to be a pediatric nurse; Serena a speech pathologist; and Chasten an occupational therapist or dietician working with children.

But The Huggables dance program will continue even after they head to college, perhaps in the form of a dance camp or another format, they said.

For now the instructors are having a riot teaching their students to sway their hips and turn their heads to hip hop music or strut across the dance floor, wands in hand, pointing each toe as they attempt that perfect ballet position.

“We love it as much as they do,” said Malinowski. “I don’t know who has more fun.”

Friday, January 6, 2012

Prenatal Down Syndrome Diagnosis Booklets Available Free to Medical Providers

from PR.com:
Atlanta, GA, December 23, 2011 --(PR.com)-- This week, Canister launched a revamped Lettercase program to distribute free copies of "Understanding a Down Syndrome Diagnosis" to medical providers nationwide. The booklets, authored by Stephanie Meredith, were created with input from representatives of the national medical organizations, including the American Congress of Obstetricians and Gynecologists, the American College of Medical Genetics, and the National Society of Genetic Counselors, and the national Down syndrome organizations.

The booklet contains accurate, up-to-date, and balanced prenatal information about Down syndrome for patients learning about a prenatal diagnosis from their physician. The booklet covers available health and education services, common medical conditions for babies with Down syndrome, information about pregnancy options, and helpful resources about the condition. The booklet also includes a Spanish translation and has been optimized for different reading levels.

Practicing medical providers who are involved in delivering Down syndrome diagnoses are eligible for a free copy of the booklet at http://www.lettercase.org/, and medical facilities may also purchase additional copies as needed. The philanthropic program is funded exclusively by the creators of the booklet, Canister, a small design studio in Atlanta, GA.

Justin Meredith, the owner of Canister, explained, "We created these booklets four years ago to fill a void of resources for expectant parents learning about a Down syndrome diagnosis. Since that time, we have distributed nearly 20,000 booklets and been fortunate enough to receive feedback and assistance from representatives of the national medical and Down syndrome organizations. The medical professionals have always been the keystone of our program, so we've dedicated our professional skill and funding capacity to make this resource available to them."

Thursday, January 5, 2012

2 separate pregnancies with Down syndrome - "I wouldn’t change anything"

from The Herald by Rosemarie Milsom:

When Dakota Skye Rutherford was born after a traumatic caesarean section on November 5, 2006, her parents Joelene and Rob were overwhelmed by shock and sadness. A couple of hours after Joelene emerged from the disorientating fog of the general anaesthetic, a doctor confirmed what the couple already knew in their hearts: their daughter had Down syndrome.
‘‘She was sound asleep when Rob handed her to me,’’ Joelene, 26, remembers, ‘‘but I could tell straight away because of the shape of her eyes, her chubby little face. Even though we knew, hearing the specialist say it broke us in half.’’
The joyful congratulatory messages and gestures that envelop new parents, particularly after the birth of a much-anticipated first-born baby, were replaced by commiseration and tears. ‘‘The whole family cried their eyes out,’’ Joelene says sadly, her eyes downcast. ‘‘It was like someone had died,’’ adds Rob, who is seated opposite in the lounge room of the family’s rented Cardiff home.
The couple was thrust into the confusing and frightening new world of disability. Hospital staff proffered books and information sheets about Down syndrome, a nurse listed the reasons why Dakota had been diagnosed and other medical staff discussed, says Joelene, ‘‘the negatives’’ of the condition. A visit from a family with a child with the condition was hastily arranged.
They were also put in contact with Down Syndrome NSW, which provides support to families trying to navigate their way through emotion and information overload.
‘‘The first thing we say when we meet new parents is ‘congratulations’,’’ family support officer Judy Davidson says. ‘‘You’d be surprised how many people tell us that that’s the first time anyone has said that to them.’’
Joelene and Rob, who had no idea what the diagnosis meant, learnt that their fair-haired baby was the one-in-700 born with an extra chromosome, which causes problems with the way the brain and body develops. They discovered that Down syndrome is the most common identifiable cause of an intellectual disability and related to the condition are a number of medical issues including heart defects, hearing and visual problems, epilepsy, hypothyroidism and gastrointestinal malformations.
While Dakota struggled to feed because of low muscle tone – this is common among babies born with Down syndrome and is known as hyoptonia – she did not appear to have any other major health problems, which provided some solace during the confusing and distressing 11 days that mother and daughter spent in hospital.
‘‘I remember it like it was yesterday,’’ Rob, 35, says. ‘‘Seeing what Jo went through [with the birth] and then dealing with the fact our baby had a disability, it was really hard to take. I remember driving home in the morning, I was so buggered, and I just cried and cried. I was like that for days. It was so surreal.’’
A routine scan when Joelene was 12 weeks’ pregnant showed that she had a high chance of having a baby with Down syndrome. But at a follow-up ultrasound four weeks later, none of the other physical markers of Down syndrome were detected. The couple was relieved, believing that their longed-for daughter did not have the genetic condition. Then 21 and with no other health concerns apart from debilitating morning sickness, the young mum-to-be did not think she was in the high-risk category. (In fact, the majority of babies with Down syndrome are born to women under 35: more women in this age group have babies and are not necessarily targeted for prenatal screening.)
The couple, who met at a Jehovah’s Witness gathering at the University of Newcastle in 2004, chose not to have more invasive pre-natal testing. Termination was never a consideration: ‘‘It’s our responsibility if we’re going to fall pregnant and we need to deal with whatever follows,’’ Joelene explains.
So they put any concerns at the back of their minds and excitedly prepared for Dakota’s arrival.
‘‘Finding out we were pregnant was the happiest day of our lives,’’ Joelene says, brightening.
‘‘We’d been trying for nine months and just as we decided to stop stressing about it, we got a positive result. We’d been having a few marriage problems and Rob felt that a baby would help.
It was such an amazing feeling [being pregnant]. That fixed us.’’

Activists are often motivated by a desire to protect that which they hold dear. The reason for Joelene and Rob’s decision to share their story with Weekender is wrapped snugly in pink and white, and sleeping peacefully in the crook of my left arm. Like her boisterous big sister, five-week-old Ruby Jae was born with Down syndrome.
The couple was told that their third child – they also have a 14-month-old son named Kayden Jon – had the same condition after Joelene was treated for excessive fluid retention when she was 27 weeks’ pregnant.

An ultrasound showed that little Ruby’s bowel had not formed properly, a strong indicator of Down syndrome. This time, Joelene wanted to know for sure so she could be spared the shock that followed Dakota’s arrival. Some of the three litres of amniotic fluid that was drained by medical staff was tested.
‘‘I had the procedure on a Tuesday and I rang at lunchtime on Thursday, but the result wasn’t in yet,’’ Joelene calmly recalls. ‘‘And then two hours later I got a call. I could tell straight away from the tone of voice. ‘Hi Joelene’,’’ she says, mimicking the quiet concern of the hospital staff member who had the unenviable task of informing her that her baby had Down’s. Having two children in one family with the condition is rare; the chance of a couple who have one child with Down syndrome conceiving another baby with the condition is about 1 percent.
‘‘I rang Rob and I was howling like an animal. How could this happen? Physically, how? We went through every emotion – crying, anger, I was swearing my head off, confusion.’’
Adds Rob: ‘‘Denial. I think we were waiting for that call to say, ‘Sorry, we mixed up your result with someone else’s’. We were delirious, then we were laughing and making jokes, stupid jokes.’’
Each year the couple proudly participates in the Buddy Walk, which is held in Newcastle in October during Down Syndrome Awareness Week, and encourages families to invite their supporters.
The Rutherfords had 30 people walking with them last time.
‘‘I joked that now we’d have two reasons to do the Buddy Walk,’’ Joelene half laughs. ‘‘After we let it sink in, we just went, ‘What can you do?’ That’s where we’re at now. This is our life and we wouldn’t change it.’’

Cradling dark-haired Ruby, who was born four weeks early and required surgery soon after to fix her bowel obstruction, is no different to holding any sweet-smelling newborn. Her nappy pops and bubbles with wind, she purses her lips and starts agitating for a feed with the occasional small cry.
In a world obsessed by image, it’s hard not to feel a pang when taking in her delicate but distinctive facial features, which, for people with Down syndrome, act like a neon sign attracting judgment, prejudice and misunderstanding.
Joelene and Rob deflect lingering stares and insensitive comments with their deep love for each other and their children. They don’t want pity; they would like the rest of us to question our assumptions about Down syndrome.
‘‘When you hear the word ‘disability’ you just think of so many negative things,’’ Rob says. ‘‘I guess that’s what I’ve taken in from the whole experience; having a child with a disability, I don’t really see what Dakota can’t do. She has so much ability.’’
‘‘I don’t even like using the word disability,’’ Joelene adds. ‘‘I prefer special needs.’’
Dakota attends day care and will start kindergarten at Hamilton South Public School next year. She enjoys her books and watching TV and is obsessed with Garfield, Madagascar and Justine Clarke; she’s moved past her Dora the Explorer phase. ‘‘Little Miss Sunshine’’, as her parents call her, loves nursing her little sister and playing with Kayden. Her moods shift like those of any five-year-old – from smiley to stubborn and back again. She has characteristics more in common with family members than other children with Down’s.
‘‘One of the myths you have to deal with as a parent is that children with Down syndrome are ‘always happy, always loving’, whereas people with Down syndrome are like everyone else; they experience a range of emotions,’’ says Judy Davidson, whose 15-year-old daughter Georgia has Down’s. ‘‘They’ll come with the skills and passions that are part of their family and who they are, not their condition.
‘‘A lot of parents can be fed information when they’re holding their tiny newborn baby, ‘Well, don’t expect them to do this, don’t expect them to do that’, whereas what we’re wanting for our babies is what other parents want for their baby – the opportunity to watch them grow and develop their own passions and strengths and to support and encourage them.’’
Joelene is understandably nervous about Dakota starting school. Like most mothers, she fears the barbs of schoolyard bullies.
She admits, mortified, that in high school she was one of the teens who knew the words that would ‘‘set off’’ students with intellectual disabilities.
‘‘Every parent wants their child to be smart and able to cope with life,’’ Joelene says. ‘‘To know that Dakota’s getting to the point where she’s going to have to start defending herself, and to have that intellectual limitation is devastating for me. How is she going to relay to us that she’s had a bad day?’’
The couple is also concerned about the impact that having two siblings with special needs will have on Kayden. So much of their attention and energy is directed at the girls.
It is a demanding juggling act that has thankfully become a little easier since Joelene sought assistance earlier this year when it was all getting too much.
‘‘We decided to do so much on our own,’’ she says, ‘‘but it got to the point where I needed support. I’ve learnt that it’s OK if you’re having trouble coping, you don’t have to be brave all the time.’’
Respite care was arranged for Dakota one day a week and Joelene’s mother, Helen, who lives nearby, assists whenever she can.
‘‘There are plenty of people with kids, not just with Down’s but with other issues, and I don’t want people to think they have to do it all on their own,’’ Joelene says.
‘‘We’re still going to have challenges – everyone does – but there is plenty of help out there. Don’t be ashamed of asking.’’
The only time during the interview that Joelene becomes anxious is when I ask how long they’ve lived in their Cardiff home.
‘‘We’ve actually got to find somewhere else to live because the owners have sold it,’’ she says.
The couple has been searching across Newcastle – no easy feat when Rob is working six days a week and Joelene has to arrange care for the two older children – without luck.
‘‘We’ve applied for five houses, but we don’t even get a look-in,’’ Joelene says with a hint of frustration and fear. ‘‘We’re desperate to find somewhere.’’
Joelene had been to two open houses the previous weekend but was overwhelmed by the number of other families submitting applications. ‘‘Everyone’s in the same situation so I know how hard it is,’’ she says, charitably. ‘‘We’ll be right,’’ Rob counters. ‘‘I’m sure something will come along.’’

Four weeks after Dakota was born, Joelene returned to her full-time job in administration and Rob, then a labourer with a back injury, became a stay-at-home dad.
It is clear when talking to the couple that their daughter transformed Rob for the better. He mentions in passing a serious car accident, depression and family issues; it’s not difficult to read between the lines.
‘‘I had a lot of anger,’’ he says now. ‘‘I was popping pills every day [for pain relief]. Thanks to Jo and Dakota, I sorted myself out. I had a job to do with Dakota and it’s made us very strong.’’
Once the couple found out they were expecting a third child, Rob knew it was time to retrain and rejoin the workforce. At his local employment office earlier this year, he noticed a flyer for a week-long indigenous empowerment program founded in Newcastle by Brian Dowd, who operates Black on Track, a respected indigenous employment and development program that is being implemented nationally.
Rob had been toying with the idea of doing youth work and embraced the opportunity to resolve lingering emotional issues.
He now proudly works for Dowd.
‘‘He’s a completely different person to who I married,’’ Joelene says, with respect and admiration. ‘‘This is a brand new Rob. I had to get to know him all over again, it was very emotional for me. He’s so positive now.’’
How have the past five years of dramatic peaks and troughs changed her?
‘‘I’m more content in myself. I haven’t fallen in a heap, I’ve managed to get on with life. I’ve succeeded so far; I hope I continue to be a good mum and carer.
‘‘It’s the hardest job in the world and you’re going to have your bad days and feel like you’re not coping, but you need to know that you’re doing the best you can.’’
Joelene and Rob describe how Dakota – and now little Ruby – have opened their minds.
‘‘You’re proud to say you’ve got a child with Down syndrome,’’ Joelene says. ‘‘I am,’’ Rob adds, smiling. ‘‘I wouldn’t change anything."

Wednesday, January 4, 2012

the only way he’s going to be part of it is if he plays football

from The Star Phoenix by Kevin Mitchell:

Stardom found Houston Berg this year, at the last place you would have expected.

Here’s what Houston did, once a week, for seven weeks: Took a handoff, found a hole, eluded
grasping arms, rambled down the football field with cheers ringing in his ears.

He’d score his touchdown, then turn around and dance, transfusing the stadium in sweetness and light.

Houston, a 16-year-old member of the Saskatoon St. Joseph junior high football team, has Down syndrome.

But his head coach didn’t want him to be a water boy or an errand runner. He wanted Houston to play — to experience, in his own way, what everybody else did.

“We’re in the kid business,” said coach Al Cooney. “This is for kids. Anyone should be able to have the opportunity.”

So Cooney talked to opposing teams and they formulated a plan, with the enthusiastic approval of players across the league.

Houston lined up at tailback for two plays each game, always early in the third quarter. The first time, an opponent would tackle him. The second time, he’d find open lanes; would magically dodge would-be tacklers. Arms would reach out, grasp, find nothing but the breeze from Houston’s passing body. Defenders would fall down. The field would open up. Tears would fill his mother’s eyes as she watched from the bleachers.

He’d cross the goal-line, he’d move his body through a choreographed dance, he’d be a football hero. He didn’t notice, or care, that the clock was stopped during his two-play stint; that the chains weren’t moving.

Houston Berg was a football player, with the helmet and pads, and he’d just been tackled, then scored a touchdown, and even opponents were happy for him, and what more could a kid want?
“He had quite a few touchdown dances,” noted St. Joseph middle linebacker Cassidy Skinner. “He’d practice them in gym class.”

“It was,” said Cooney, “the highest point of the games (when Houston carried the football). The peak of the action came when that was happening.

“(Opposing coaches) all talked to their players, coached them up in terms of letting Houston experience a little bit of success and failure. He’d get a touchdown, or he’d get tackled, but it was all planned. We didn’t want him to get hurt, obviously.”

Houston — whose older brothers Mitch and Carter have both played in the Western Hockey League — faithfully attended every football practice and took part in individual and skills drills. When the team scrimmaged, he’d run a few reps of the plays he’d use for the next game. The strategy usually called for him to follow his blockers up the middle, though he’d often break away and do his own thing.

Houston learned to listen quietly, without misbehaving, when the coach was talking. He learned patience. It wasn’t easy, standing on the sidelines an entire football game, just to get his two plays. When his enthusiasm waned, teammates would pick up him verbally, get him going again.

It all started with a humble request from parents Holly and Dale Berg to get Houston involved in the football program. Perhaps, the thinking went, he could fill water bottles. Or something.
“But Mr. Cooney just said, ‘Well, the only way he’s going to be part of it is if he plays,’ ” recalled Houston’s mother Holly. “I wondered if we’d bit off more than we could chew, to be honest.”

But her fears subsided when she saw how deeply the entire league bought in and she’d now like Houston to keep playing football.

Next year, the Grade 10 student plans to suit up for the junior team again. Holly doesn’t think it’s right to ask the senior squad if he can play, because those realities are different — just like she won’t ask about basketball, knowing the game’s flow would make it impossible for Houston to integrate like he did on the gridiron.

“I’m not going to ask for something that’s not doable,” she said. “I know our limitations and I don’t want it to be all about him, because that’s not what it’s for. This is everybody’s game. But it’s nice he can be part of it — still have his game, but give it to everybody.”

And she hopes Houston’s experience can show other parents, coaches and schools what can be done for kids with special needs. Some people, she says, don’t know how to relate to those with Down syndrome. But Houston likes music and roughhousing, and loves playing sports — both at his school and in Special Olympics, where he’s involved in track, basketball, swimming and soccer.

He is, says his mom, just a guy. Like the other kids in his school who are just guys.

“There’s many, many kids out there who just need someone to say, ‘Would you like to come out and play?’ ” Holly said. “Maybe it’s a little bit of work initially, but the reward is huge at the end of it.”

She’s watched Houston grow as a person since the first time teammates dressed him in pads and walked with him onto the field. He’s learned about being patient and the value of working hard at something you love. His status as a football player has aided his confidence at school.

Houston says he was scared when he ventured onto the turf for his first-ever game action.

Scared, and nervous. But he gamely took the ball from the quarterback and ran outside his comfort zone, and his life changed because of it.

Houston tells the reporter that one of many things he likes about football is wearing the pads; that they made him feel bigger.

“So you looked like a real tough football player when you were out there?” he’s asked.
Houston pauses and smiles shyly.

“Yes,” he said. “I am.”