Tuesday, April 30, 2013

Family Sues After Seeing Altered, 'Offensive' Images of Son with Down Syndrome

by Susanna Kim from ABC News:
A Nashville family is suing Cox Media and other defendants after they posted altered images of their son with Down syndrome with descriptions that read "Retarded News" and other "offensive" mischaracterizations.
Pamela and Bernard Holland are parents of Adam, who was diagnosed with Down syndrome at birth. The suit, filed with the U.S. District Court for the Middle District of Tennessee, claims the the Hollands were shocked to learn that an image of Adam taken in July 2004, when he was 17, was used for commercial use with "defamatory" descriptions, the Hollands' lawsuit states.
Pamela Holland declined to comment to ABC News on the suit.
In the original photo, Adam is holding a sketch he created while attending an art class at the Vanderbilt Kennedy Center in Nashville. But a radio station in Tampa, Fla., that is owned by Cox Media Group, WHPT-FM, used the image on its website in which Adam holds a sign that reads "Retarded News."
The lawsuit does not describe how the radio station obtained the image.
Last summer, the group "Spread the Word to End the Word," which campaigns to end the use of the word "retard" to describe people with mental disabilities, contacted the radio station about the photo.
The program director of the radio station wrote an email to the campaign, apologizing for the use of the photo by "The Cowhead Show."

Monday, April 29, 2013

VooDoo's 14-year-old fan scores a one-of-a-kind touchdown

by John Roach from NOLA.com:
Friday's game against the Pittsburgh Power counted as a loss for the New Orleans VooDoo, but not every local fan saw it that way. Andrew Lafourcade, a 14-year-old boy with Down Syndrome, got a moment he--and those who witnessed it--won't soon forget.
After VooDoo kick returner Brent Holmes received the "opening kick," he pitched it to Lafourcade, who was decked in a VooDoo uniform. Lafourcade proceeded to zig-zag his way through Power defenders, with his VooDoo teammates cheering him on, all the way for a touchdown.
Lafourcade punctuated his score with a salsa-style touchdown dance. "This day has made Andrew's life," his mother Ann told the team afterward. "He was so excited and I was so proud of him for getting the job done."
Lafourcade, who is not able to play sports at a playground any more because of insurance restrictions, plays baseball and soccer in the Miracle League of Greater New Orleans. The Miracle League is designed to serve kids who cannot be accommodated by established leagues because their special needs and/or disabilities.
The vision of the program is to provide any disabled child, regardless of their level of disability, the opportunity to play team sports and enjoy the emotional and physical benefits of being part of a team.

Sunday, April 28, 2013

Bracelets program gets boost

A program designed to assist caregivers of those with Alzheimer’s disease, autism, Down syndrome, traumatic brain injuries and dementia received another boost Monday.
by Mike Fornes from Cheboygan News:
CHEBOYGAN  --  A program designed to assist caregivers of those with Alzheimer’s disease, autism, Down syndrome, traumatic brain injuries and dementia received another boost Monday.
Burnie Myers from the Cheboygan County United Way presented a $1,400 check to Cheboygan County Sheriff Dale Clarmont to purchase four additional Project Lifesaver bracelets.
Project Lifesaver, a program designed to track and rescue those with cognitive conditions who tend to wander from home, was originally obtained with funds from a federal grant in 2011.
“When a person goes missing, caregivers need to call 911,” Clarmont said. “The Cheboygan County Search and Rescue Team has been specifically trained to respond, set up and utilize the equipment to locate those that wander. The average rescue time is around 30 minutes for people equipped with the bracelets.”
Clarmont said the team averages between 15 and 20 calls for service each year. The service is available for Cheboygan County residents.
“Our goal is to obtain at least 10 transmitters for use in our county,” Clarmont explained. “Time becomes the enemy in locating people who wander and because of this program we are able to provide a service that gives peace of mind to the families of those afflicted.”
Anyone interested in the program is urged to contact Detective Todd Ross at 627-3155.

Saturday, April 27, 2013

Man Accused of Raping Special Needs Woman

from News Channel 3 WREG Memphis by Adam Hammond:
(Memphis) After a year on the run an accused rapist is behind bars after a Memphis woman says he raped her special needs sister.
William Scott, also known as Willie Sally was arrested in a traffic stop in Nashville and brought back to Memphis on charges he raped a woman with Down’s syndrome.
“It`s been awful ever since everything happened.  Really awful,” said the victim’s sister.
Scott is accused of going into this apartment on Cane Meadow Circle and raping a thirty year old woman with Down`s syndrome.
Her sister says she has the mental capacity of a 5-year-old.
“She really didn`t say anything she just kind of shut down. Shut down completely. It was hard you know,” said the victim’s sister.
The victim’s sister says she returned home and found her deep freezer blocking the front door.
She realized something wasn’t right, and once she got inside claims to have seen Scott naked having sex with her special needs sister.
“Since everything happened it`s just basically taken a turn for the worst as far as family, and it really just messed everything up,” said the sister.
Scott got away through a back gate and was on the run for over a year.
“I`m glad he was caught of course, but just the emotional pain and turmoil we`ve gone through. I mean I had to move and we suffered from that.  We`re still going through it to this day,” said the victim’s sister.
Scott lived a few doors down from the alleged victim who has since moved.
He’s being held on $100,000 bail.

Friday, April 26, 2013

Student With Down Syndrome Named to National Honor Society

Student With Down Syndrome Named to National Honor Society
by Brad Drazen from NBC Connecticut:
Jamie Roland, a junior at Hall High School in West Hartford, is being rewarded with membership into National Honor Society, but his journey to junior year has not been an easy one.
Roland has Down Syndrome. The family previously lived in Florida and his mother, Lisa, said she was told that a boy with Jamie's challenges didn't belong in a mainstream public school, so she home-schooled her son for several years before they moved to Connecticut in 2009.
"We came with a lot of baggage and we were very reticent about putting him in school," Lisa Roland said. "We didn't know how he was going to act or react to such a large environment."
In his three years at Hall High, Jamie has thrived both in and out of the classroom.
"The other students are nice, engaged and are fun to hang out with," the energetic 18-year-old said.
Lisa said they study together every night after school for at least four hours and that hard work has paid off.
Jamie's maintained a 3.6 grade point average and has been rewarded with membership into National Honor Society.

Wednesday, April 24, 2013

National Down syndrome advocates press for independent inquiry into Md. man’s custody death

from the Washington Post by the Associated Press:
National advocates for people with Down syndrome said Tuesday they are pressing for an independent investigation into the death of a man who suffocated while three security officers were trying to forcibly remove him from a movie theater.
The National Down Syndrome Congress and the National Down Syndrome Society said they have met twice with U.S. Justice Department officials about the Jan. 12 death of Robert Ethan Saylor, 26, of New Market. Saylor had Down syndrome.
Officials from the agency’s criminal and civil-rights divisions said on Monday that they need more information before deciding how to proceed, the advocacy groups said.
The executive director of the National Down Syndrome Congress said the officers caused Saylor’s death.
“Ethan did not die because he had Down syndrome. Ethan died because he was improperly restrained by three police officers,” said David Tolleson.

Tuesday, April 23, 2013

4/22 meeting with Dept of Justice about Robert Ethan Saylor & Town Hall 4/23

NDSC and NDSS want to see justice served in Robert Ethan Saylor’s case and increase awareness and accountability by police departments across the country to prevent another tragedy from occurring.
To address the civil rights violation in Ethan’s case, NDSS and NDSC, with F.R.I.E.N.D.S. of Frederick County and Ethan’s mother, Patti Saylor, will meet with the U.S. Department of Justice, Office of Civil Rights next Monday, April 22.  Our organizations will continue to demand an independent inquiry, as we have done to date.

Our organizations also believe that training materials for police departments across the country will enhance efforts to prevent another tragedy through education and better understanding.  NDSC and NDSS are developing and disseminating training materials for law enforcement and first responders that will address specific health and behavioral concerns associated with people with Down syndrome.  If individuals or affiliates would like to share materials once they are completed, please e-mail susan@ndsccenter.org.

NDSS and NDSC will also co-host a town hall meeting on Tuesday, April 23, at 12:00 PM ET.  All are encouraged to attend to hear more and attendees will have the opportunity to voice questions and concerns.  You can join the Town Hall by dialing 1-877-410-5657 and using the following passcode:  69126.

As we continue our efforts, we encourage advocates to sign the petitions at change.org and whitehouse.gov.    We will continue to provide updates as they are available.

Monday, April 22, 2013

This is one of my favorite videos about Down Syndrome - please share it!

Please share this video with family, friends, classmates, coworkers, and anyone else who needs to understand what it means to have Down syndrome.

This video explores the life, hopes, challenges, and dreams of three kids living with Down syndrome: Elyssa, Rachel, and Sam.


Sunday, April 21, 2013

NDSS Spring Luncheon honoring Hoda Kotb, Jordyn Dannenbaum, & Mikayal's Voice

Please join us! We are excited to return to 583 Park Avenue in New York City to celebrate the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community.

NDSS Spring Luncheon
Tuesday, May 14, 2013
11:30 am – 2:30 pm
583 Park Avenue
63rd Street and Park Avenue
New York City

Hoda Kotb
Co-host, Fourth Hour of Today; Correspondent, Dateline NBC; Author, TenYears Later: Six People Who Faced Adversity and Transformed Their Lives

The Melissa Riggio Voices Award
Presented to Jordyn Dannenbaum, a 20 year old Self-Advocate from Villanova, Pennsylvania.

Mikayla's Voice
An organization that develops and supports inclusive programs that educate, inspire and empower kids of all ages and abilities.

Click here to learn more and register for the event.

Click here for a printable invitation.

Thank you for your ongoing loyalty to NDSS and the Down syndrome community,
Pamela Sandonato
Vice President of Development
National Down Syndrome Society
666 Broadway, 8th Floor
New York, NY 10012
212-763-4365 direct

Saturday, April 20, 2013

What it feels like to: grow up with Down syndrome

by Andrew Macintyre from the Herald Scotland,
I am 25 and go to Cardonald College in Glasgow. I've done drama for three years and this year I'm studying art. Quite a few of my friends from West Lane Gardens day centre in Johnstone go there. Only two of them have Down syndrome and the rest have other learning difficulties.
I go to the centre on Tuesdays and Fridays. It is run by Capability Scotland and I've been going since I was 18, but it's closing in December. We found out in October 2010 and did petitions – we got about 1700 signatures by early 2011, but it is still closing.
The day centre is 10 minutes from home, where I live with my mum and dad, and I can get there myself by bus. I do snooker, cinema, arts and crafts, gardening and cooking, and we have social evenings. If I could do anything, I'd stop the closure of West Lane.
My mum and dad had to fight to get me into the right mainstream high school, and I'm glad they did. I did three Standard grades – geography, English and social and vocational skills. An auxiliary came with me to classes and I had one-to-one tutorials with a learning support teacher. I got quite good marks in my Standard grades and got the Scottish Qualifications Agency Gold Award as candidate of the year.
I've been trying to get a job and have had lots of work experience. I've been at Barclays bank in the admin department, the Grand Central Hotel in Glasgow and the King's Theatre in Glasgow. I'm going to volunteer at Sense Scotland. I'm also a trainer for Down's Syndrome Scotland and they give me money for that. I get a payslip, which feels good.

Friday, April 19, 2013

Jenny Hatch gets new attorney

from WAVY 10:
Jenny Hatch, a young woman with Down Syndrome, has gotten a new attorney in hopes of moving out of a group home.
Hatch, 28, has been in and out of courts for months. Her mother fought to keep Jenny in a group home, but Jenny has repeatedly said she wants to live with her friends, Kelly Morris and Jim Talbert, who say they will gladly take her in.
The implications of Jenny's case are gaining statewide attention. The State of Virginia was recently sued by the U.S. Department of Justice for putting too many people like Jenny into group homes, instead of single family homes like Morris and Talbert's.
This week, Jenny was appointed an attorney provided the by the Quality Trust for Individuals with Disabilities, who will co-counsel Jenny's case with Robert Brown.
Legal Director Jonathan Martinis specializes in cases like Jenny's and says he will fight for her freedom starting with the guardianship trial in May.

Thursday, April 18, 2013

13 articles reviewing events following Robert Ethan Saylor's tragic death at a movie theater

Tuesday, April 16, 2013 6:00 am
In the News-Post’s Saturday lead story, Sheriff Chuck Jenkins argued that his department was capable of conducting use-of-force investigations. In particular, he was referring to two recent fatalities that involved sheriff’s deputies.
Sunday, April 14, 2013 6:00 am
Frederick County Sheriff Chuck Jenkins says he believes his office is able to handle use-of-force investigations internally, even as calls increase for a more independent look at recent cases.

Saturday, April 13, 2013 6:00 am
The deputies who had Robert Ethan Saylor in custody just before his death have returned to full duty, Frederick County Sheriff Chuck Jenkins said Friday.
Sunday, April 7, 2013 6:00 am
Our community is feeling horrible about the senseless death of Robert Saylor, a young man out to enjoy his recreation, but who could not seem to conform to rules that perhaps made no sense to him.
Thursday, March 28, 2013 6:00 am
A conflict resolution office within the Department of Justice is working with Down syndrome advocacy groups and the family of a New Market man who died in January while in the custody of off-duty sheriff's deputies.

Sign the petition to direct the DOJ & FBI to investigate the death of Robert Ethan Saylor

from the White House.gov:

we petition the obama administration to:

Ethan Saylor was a 26 yr old man with Down Syndrome. In Jan 2013, watching a movie, his chaperone told him to wait in the theater while she got the car.

A theater employee called mall police since Ethan hadn't bought a 2nd ticket. 3 off-duty sheriffs responded.

They dragged Ethan from the theater, hog-tied him with 3 sets of handcuffs, held him down with their weight, ignored the health-care worker that told them she had the situation under control, & intimidated others trying to render aid. Ethan suffocated to death. His final words: "I Want my Mommy".

We ask you, as our President and as a father, to express your condolences to the Saylor family, and to direct the FBI and DOJ to investigate whether Ethan's civil rights were violated, & whether police brutality caused his death.

  • Signatures needed by May 03, 2013 to reach goal of 100,000: 98,363
  • Total signatures on this petition: 1,637

Created: Apr 02, 2013

Teen with down syndrome turned away from gym

KLTV.com-Tyler, Longview, Jacksonville, Texas | ETX News
by Justin Hanson from KLTV 7:
A Mid-South family with two children says they tried to join a fitness center earlier this week but were turned away because the staff was not trained to deal with one of their children, who has Down Syndrome.
"After we purchased our family membership, we could only bring three-quarters of our family," said mother Sherrie Cates.
No matter the day or circumstance, 13-year-old Mollie Cates is a happy young lady.
Her parents said they were shocked at how they were treated when they took Mollie and her older sister to Ripley Family Fitness Center Monday.
"We got turned away because of her," said father Kevin Cates.
Kevin and his wife said it was the first time all four family members had been to the gym together.
"Their brochure says they don't turn anyone away, anyone can come in. But, we were met at the door and they said their staff isn't trained to deal with anyone like Mollie," said Sherrie.
Sherrie said her daughter is in a regular class at school and even participates in physical education. She said there is no reason she should not be able to go to the gym.
"We were never given a chance to say, 'We'll be with her. This is how we can work with her.' We were just told, 'No, there's no one here who can work with her,'" said Sherrie.
The gym is owned and operated by the city of Ripley.  City attorney Steve Crain said the gym has never come in contact with a customer with Down Syndrome.
Crain says they are working now on ways to accommodate Mollie Cates.
"She needs to be strong and healthy just like everyone else. I want her to have that chance," said Kevin.
City Attorney Steve Crain says the Cates family never included Mollie's name on the official application, which also requires a doctor's statement for membership.
Crain calls the whole thing a misunderstanding.

Wednesday, April 17, 2013

man goes to police after disabled son is slapped at bowling alley

by Macradee Aegerter from Fox News:
An Overland Park father is pressing charges after he says his son with Down Syndrome was slapped across the face by an employee of AMF College Lanes.

Mark Camacho is speaking out about the incident because he says this could be anyone’s son or daughter with a disability and he says no one should be subject to discrimination or assault.

Camacho’s 21-year old son, Daniel, is an active young man living with a disability.

Despite having Down Syndrome, Daniel is an eagle scout, a first degree black belt and every Friday night he bowls with his Special Olympics bowling league.

“He’s a very kind and gentle young man. And he sees the good in everybody and everywhere,” Camacho said.

It’s at that bowling alley two weeks ago that Camacho says an assault took place. It started, he says, with Daniel, who has the mental capacity of a teenager, horsing around.

“He observed my son running around and being playful. And hitting people in the back of the ear like that. Like young people are prone to do,” said Camacho.

Camacho says it ended when Daniel did the same thing to an employee of the bowling alley.

“The man turned around and according to the witness and according to my son, the man turned around and smacked him in the face like that and called him stupid,” Camacho explained.

Camacho says he’s angry over what happened.

“Its tough enough in life to live with a disability, to be a parent of someone with a disability, let alone in that setting that they can become victimized quickly by someone who’s supposed to be working with them and helping them and being kind to them,” he said.

More than anything though, he says he’s concerned for anyone with a disability. A vulnerable population who is often picked on, discriminated against and unable to speak up, he says.

“I want people to know that this happened, not because it’s unique or special but because this could happen to anyone’s son or daughter who has a disability,” he said.

Camacho filed a police report with Overland Park police. He says he hopes the man is prosecuted.

AMF College Lanes referred us to their corporate office. The corporate office is not open on weekends.

Tuesday, April 16, 2013

Wedding Day Is A Dream Come True

by Andy Banker from FOX 2 St. Louis:
It was a wedding for the ages in Clayton Saturday, drawing a crowd from Chicago, New York, North Carolina, and Washington, D.C.  FOX2 went behind the scenes with the bride, her mom, and sisters, as they got ready for a real life, Cinderella story.
Perhaps no one had ever dreamed longer and harder of her wedding day, than Lydia Orso, 35. She was born for it.
“She had binders and binders of vows she’s written; songs she’s wanted to sing; dreams, poems.  She’s collected pictures forever,” said Lydia’s bridesmaid, sister Melanie Orso.
“I’ve been dreaming about my wedding since I was 2.  I was planning my wedding since I was 2,” Lydia said.
Orso was born with Down Syndrome.  As she grew up there were doubts whether someday a prince really would come for her.  She graduated from high school and community college;  yet always dreamed of being Cinderella.
“I always think about my mom telling me that the doctor thought she wasn’t going to walk or talk or any of that,” said Lydia`s sister and bridesmaid, Angie Thomas.  “Look at her.  She’s just an inspiration to everybody.  Here she is getting married!”
The ladies were all getting their hair and makeup done at David`s in Clayton in the hours leading up to the wedding, Saturday.
Yes, she’s found her prince, Tom Swenson, 39.   He is the whole package.

Linda Crnic Institute for Down Syndrome Co-Hosts Workshop on Cognition in Down Syndrome in Washington, D.C., on April 13-15

Workshop will bring top scientists together to share discoveries, explore collaborations
from the Herald Online:
The Linda Crnic Institute for Down Syndrome will co-host the “Workshop on Cognition in Down Syndrome – Molecular, Cellular and Behavioral Features and the Promise of Pharmacotherapies” April 13-15 in Washington, D.C. The workshop will bring top scientists together to share discoveries and explore collaborations with the aim to improve the lives of people with Down syndrome.

Katheleen Gardiner, Ph.D., a professor at the Crnic Institute and the University of Colorado School of Medicine’s Department of Pediatrics, is the workshop’s organizer. This is the third international workshop she has organized on Down syndrome and the biology of chromosome 21.

Gardiner received a grant from the Jérôme Lejeune Foundation to organize the workshop and the past two workshops she organized in 2004 and 2007. More than 130 experts from a variety of scientific disciplines are expected to attend the workshop.

“Our invited speakers are not Down syndrome researchers but may be interested in a specific gene on chromosome 21 or in some other type or specific feature of intellectual disability,” Gardiner said. “They may be persuaded to think about doing Down syndrome research and/or provide new ideas, research tools or perspectives to current Down syndrome researchers.”

Monday, April 15, 2013

‘Bieber Fever’ fundraiser: Concert-ticket raffle will benefit Special Olympics

Students tap ‘Bieber Fever’ for fundraiser: Concert-ticket raffle will benefit Special Olympics

(THOUSAND OAKS, Calif. – March 22, 2013) California Lutheran University students are raffling off VIP tickets for a Justin Bieber concert to raise money for Special Olympics Ventura County.

Two winners will be randomly selected and each will receive a pair of VIP box seat tickets for Bieber’s June 24 concert at the Staples Center. Raffle tickets are $10.

The Thousand Oaks-based Krishak Foundation, which was started by 15-year-old La Reina High School student Divya Manthena, donated the tickets to Special Olympics Ventura County. Students in Jean Kelso Sandlin’s Advanced Public Relations class met with Manthena and are promoting the raffle as part of a service-learning project this semester.

Raffle entry forms are available on the Special Olympics website at sosc.org/biebervip. Tickets can also be purchased at various “Bieber Storm” sites at Ventura County businesses. All entries must be received or postmarked by May 15.

The next “Bieber Storm” event is scheduled to take place during the Conejo Valley Days from May 2 – 3 at Conejo Creek Park in Thousand Oaks, Calif. Additional events will be announced via social media platforms including Twitter and Instagram at @SO_BieberVIP, and on the group’s Facebook page, Raffle for Justin Bieber Tickets.

With a goal to raise $20,000, the class plans to sell 2,000 tickets through their hyper-local social media campaign.

Special Olympics provides physical fitness and athletic competitions, social interaction, community involvement and empowerment to people with intellectual disabilities. Within Ventura County, the organization offers 600 athletes training and competition opportunities in 10 year-round sports at more than 20 training sites.

For additional information, contact Jan Radnoti, regional sports manager for Special Olympics Ventura County, at 805-650-7717.

Sunday, April 14, 2013

A Sweet Child with Down Syndrome and a Dog Show Life's Perfection

From HeathCliff Rothman:
We love the LOVE in this video. We invite you to share.

A Sweet Child with Down Syndrome and a Dog Show Life's Perfection
Sugar for the soul! A Sweet Child with Down Syndrome and a Golden Labrador reach across to touch each other ... Two tender creatures expressing their beauty -  and the Sweetness of Life. Remember: we ALL ahve a tender heart that beats within us. Show others. Creater of video unknown.

Saturday, April 13, 2013

'Odd Socks' music video for World Down Syndrome Day by Agi and Magsi

'Odd Socks' music video for World Down Syndrome Day by Agi and Magsi
by Agnieszka Kolaczynska

Wear odd socks for world Down syndrome day!

To find out why go to my latest blogpost on www.agnieszkaproductions.co.uk

We make documentaries about our lives together and release them annually, here is the first one : http://www.youtube.com/watch?v=P61qn7aguJo and here is the second one: http://www.youtube.com/watch?v=-6jIVTEWBhQ 

The third one is out soon-subscribe to my facebook page agnieszkaproductions to get latest film & blog news.

Music is: "Beautiful Uncertainty" by Kuba Oms.starring Magsi & Agi.
Buy Song: http://VideoStarApp.com/BeautifulUncertainty Please share freely and comment below if you enjoy it!

Friday, April 12, 2013

Was the Glee school shooting episode offensive to people with Down syndrome?

by Sonya Sorich from the Ledger-Enquirer
Warning: This post contains some spoilers about the April 11 episode of "Glee." If you haven't seen the show and want to avoid spoilers, stop reading now. Thanks.The April 11 episode of "Glee," which featured a high school shooting, sparked a debate on Twitter about the Fox show's treatment of a character with Down syndrome.
SPOILER ALERT: Becky, a student with Down syndrome, brought her father's gun to school. Earlier in the episode, she expressed fear about her life after high school. The gun fired accidentally and Becky's classmates don't know what really happened because cheerleading coach Sue Sylvester took the blame. As a result, Sue was fired from the school.
That's the short summary. Read Entertainment Weekly's full recap here.
Anyway, as I monitored Twitter throughout the show, I noticed a growing pool of tweets from people who shared an opinion: By making Becky the one with the gun, "Glee" reinforced a belief that people with Down syndrome aren't normal. Some sample tweets:
  • "Thank you Glee for setting Down Syndrome awareness and acceptance back light years. Some people now see our kids in an even worse light." (@T21ASDMommy)
  • "I shouldn't feel the need to be making the distinction to people that having Down Syndrome is not code for 'mentally unstable.' Thanks, Glee" (@KaitlynLauren14)
  • "Really, #glee, I heard you had the girl with Down Syndrome become a high school gun shooter. So much for comedy, this is just sad. #rude" (@Leaayo)
Lauren Potter, the actress who plays Becky, talked to the Huffington Post about the controversy surrounding her role on the episode. The plot didn't make her appear less human, the actress suggests.
"Whether she has Down syndrome or not, it doesn't matter ... Why wouldn't it be somebody with Down syndrome because she's a kid. She's a teenager. She makes stupid decisions just like other teenagers do," she told the Huffington Post.

Song honoring WDSD 2013

from Natalie Burgess Alberts:
Hello! My 16 month old son, Jarom, hase Down syndrome and is the light of my life. I am celebrating World Down Syndrome Day 2013 with the release of a song I wrote specifically for this occaison, "Angel With a Broken Wing". I would be honored if you would share the link below to my webpage so I can share the joy I have found in this journey. The song can be streamed over the internet, and/or purchased by download. 10% of the proceeds will go towards Down syndrome research and the download is only $0.75

Stream or download Natalie's song "Angel With a Broken Wing" here.

Thursday, April 11, 2013

Dancing for Down's draws 300 to Surf Ballroom

by Kristin Buehner from Globe Gazette.com:
People with a heart for their friends and family members with Down syndrome put on their dancing shoes Saturday and headed for the Surf Ballroom to help raise money for a good cause.
The third annual Dancing For Down’s brought in an estimated 300 people from the Waterloo-Cedar Falls and Mason City-Clear Lake areas.

“It’s a great way to raise funds for the work our group does and to raise awareness of the cause,” said Jake Byers of Waterloo, president of the local board of Designer Genes Down Syndrome.
Byers, who stood holding his 5-year-old daughter Hannah, said, “We want to raise awareness that people with Down syndrome are a blessing in our lives.”
In addition to a rock ’n’ roll dance with a disc jockey, a large silent auction and raffle were planned to help raise money for the group’s work, which includes helping new parents of children with Down syndrome and working with schools to advance the cause of inclusion in the classroom.
The Designer Genes group also sponsors activities such as Fun Days, Movie Days and Swimming Days for people with Down syndrome and gives scholarships for people to attend special camps and educational conferences, Byers said.
Dixie and Keith Stiles of Mason City were among the crowd attending the event with their granddaughter, Emma Stiles, who has Down syndrome.
Like many of the children attending, Emma had dressed up in a red dress and shoes for the big night, her grandparents said.
“It’s just so awesome that they do something like this,” Dixie Stiles said. “It’s good for the kids. It’s like a party for them.”
Keith Stiles agreed.
“I think more than the kids have fun,” he said with a grin. “It’s a nice venue, too.”

Wednesday, April 10, 2013

Changing the Face of Beauty

Changing the Face of Beauty from SolidLine Media on Vimeo.

Our Mission: To integrate individuals with disabilities into general advertising. It is our goal that all people will be represented all the time. It is just right.
Changing the Face of Beauty feels that it is so important for all people to see themselves in advertising and the media. We believe it is such a key part of true integration and acceptance. 1 in 4 people in our country have a disability. That is too many people under represented in our media today. Anyone who looks at our gallery will know why it is so very easy to include all individuals with disabilities into their advertising!
We are very thankful to the families of these beautiful children and young adults, as well as for the photographers that capture the light they have. This takes teamwork!

Tuesday, April 9, 2013

A Mother's reflection on WDSD 2013

World Down Syndrome Day 2013
by Katie from 5 boys and 1 girl make 6:
I write this post in honor of my daughter Grace and for the many Mothers that walked before me paving the way for my daughter and all people living with a disability.   My life changed the day I was told my child would be born with Down Syndrome.  The things that bothered me just hours before no longer had a place in my life.  When Grace was born our family transformed and we become more caring and accepting individuals.
I struggled this year to come up with a story to share on this very special day.  I felt like I knocked it out of the park last year when I wrote about  women who were close to me and who inspired me.  It didn’t come to me till I was photographing a very special little boy named Remy. So to Remy and his Mama I say thank you for opening yet another door of opportunity and wisdom by introducing me to Josephine Lapp.
I am sharing Josephine’s story not because she is a Mother of a child with Down Syndrome.  I am sharing her story because she was at the beginning of the movement of acceptance that started over 50 years ago.  She stimulated change in our community and for our world by not taking no for an answer and pushing through fear to find opportunity for her daughter.  Today instead of hiding our children we celebrate them.  We celebrate what makes them unique and for that I am forever thankful.
Josephine (Jo) is a mother of 3 children, 2 girls and a boy.  She is 97 years young and still advocating for Tina, her daughter who was born with a brain injury.  Sixty years ago Jo was told by the Catholic School Tina attended that she was not able to keep up.  They suggested she be put into public school where there were resources.  When Jo inquired with the public school she was told that her daughter had to be reviewed by a psychologist in order to receive special education services.  The psychologist had not been out to that school for 2 years.  Jo took matters into her own hands and utilized political contacts to get someone to review her daughters case as well as the many other children waiting for an appointment.  All the children were reviewed within two days and the only child rejected was Tina.  She was devastated, as any mother would have been, to be told that her daughter was not capable of learning.

That did not stop her.  Even though she felt lost and abandoned by the system she searched and found an article about a local organization called The Garden Center.  She found herself attending a board meeting consisting of predominately men.  Yep, she was the only women in the room.  At that time they were sharing space above a fire department that would no longer be available the coming year.  As the meeting ended the local non-board members exited the room and she spoke up.  She asked how much money the school had in their fund.  The men in the room looked at her like she had lost her mind.  She asked them again how much money was in the fund.  They finally told her 5,000.00 and she proceeded to tell them that was good because they needed that to build their own school.  She turned and asked for volunteers to help organize the plan  and no one raised their hand so she appointed men to the positions of finding land, budgets and building designs.  Within a week the land was found and volunteers were stepping up to help.  Months later the building was finished and their children had a school.
Once the school was finished she proposed a residential faculty because of the growing concern of aging  parents and students.  Within a couple years she had the residential home right next door built by 100% donations of time, money and skills.  15 students had their own rooms while sharing a living room, kitchen and multiple bathrooms.  Now Garden Center services 100′s of day program participants and houses 75 residents in a home environment.
While I was sitting in Jo’s home I could not help but be humbled by her strength and her determination.  Even now at 97 years young she is concerned about the residents that are now senior citizens.  She wants a plan in place for the aging.  She has created a beautiful  idea in her head that will make the Garden Center even more magical then it already is.
One thing I have realized this past year is that it does not matter what disability you are dealing with, or what obstacles you have been dealt in your life, it is what you do with your time.  It is what you make your passion.  Those two things can be life changing for yourself and so many other people.  Jo is an inspiration.  When she was told by a respected Doctor that her daughter was not capable of learning she cried and then she stood up and made a change.  That change paved the way for my daughter and your child.  She made sure that there was opportunity for our children to live semi independently with their peers and their friends.  She found a way to teach them life skills and give them jobs if they were capable.  Before schools like this children with developmental disabilities had very little opportunity outside of their own homes or institutions.
I asked Jo as I was leaving if she had any words of wisdom for myself and the other parents who are walking along side their children.  She told me that she would tell them to spread their love around to all their children.  She encouraged me to let all my children know how much I loved them and to spend time with my husband to show him the love he deserves.  I love that.  She is all about working hard and loving hard.
As we celebrate the extra 21st chromosome this Thursday I will remember to not only “Rock my Socks” but to continually spread myself to my family as well as to the world.  I will stand up for what I believe in.  I will encourage others who are doing amazing things just like Jo Lapp and I will help because there is a lot of work left to do.  Jo and her friends started something great and it is our turn, it is our responsibility to support it and nurture it into something even greater.
Parents are great, they are strong and our children are even stronger.  The sky is the limit for individuals with Down Syndrome and we will not accept anything less.  I am proud to be a parent of “Differently-abled” children!  Their strength and hard work inspire me every day.  So I am asking you all to take that time to get to know someone this week with Down Syndrome. Answer them when they great you with a, “hello”.  Look at them in the eye and shake their hand and don’t forget to wear crazy socks on Thursday to celebrate with us!
I am closing this post with a beautiful video produced by the IDSC in honor of our loved ones.  Our loved ones rock! We are lucky to walk next to them on their road of life. This video explains who they are and why thier life is valuable and important not only to their families but to our world.

Monday, April 8, 2013

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

by Karen from Friendship Circle.org:
It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive.

It may help to have a response prepared for that day.  Having that comeback line at the tip of the tongue gives a little edge of confidence that actually prevents people from saying rude things in the first place.  

Here are ten simple responses that work in real life situations.
10. “Excuse me?”  Miss Manners says that this is always the most polite response.  It causes the person with the original comment to pause and re-think his words.  If he repeats the rude comment, simply repeat in a sweet voice, “Excuse me?”  Keep going with it until the light bulb switches on.
9. “I’m sorry that my (or my child’s) permanent disability has caused you a temporary inconvenience.”  One of my buddies uses this line, and it is a conversation-ender.
8. “Thank you for your concern.”  With a smile.
7. Silence.  With a smile.  And walk away.
6. “Why do you want to know?”  Sometimes it is necessary to answer a question with a question, especially when you are cornered by a personal question on a delicate topic.
5. ”Why would you say that?” Force them to think about what they just said.
4. “Nothing is wrong with her.  Is something wrong with you?”  Ask with genuine concern, without sarcasm.  Often the person is asking because of a family member with a similar condition.
3. “Yes, he can talk.  He can also hear and understand everything you say about him.” For just a little guilt trip.    
2. “I respectfully disagree.” 
1. “I have (or my child has) an equal right to be here.” This is the line I’ve been saving all these years – but I’ve never had to use it in any of the many, many awkward public situations I’ve found myself.  My belief in equal rights is what makes me stand taller.

What is your standard response to unhelpful comments or questions?  Please share in the comments below.

Sunday, April 7, 2013

couple with Down syndrome land jobs, find love

by Sonya Padgett from The San Francisco Chronicle:
The way Michelle Desrochers looks at her boyfriend and then places her hand in his, you can tell she adores him.
He understands her, Desrochers, 24, says of Carlos Sierra. He treats her with respect and kindness, opens doors for her and even finishes her sentences.
They are wildly in love. They plan to marry. First, though, they must both complete couples counseling and life skills training, which will teach them how to be in a relationship and how to live independently.
Sierra, 29, and Desrochers have Down syndrome, a genetic disorder caused by the presence of an extra chromosome.
Those born with the syndrome experience mild to moderate intellectual disabilities and delayed physical development. Many suffer from heart problems and other health conditions that can shorten their life expectancy. According to the National Institutes of Health, about 6,000 babies in the U.S. are born every year with the condition.
March 21 was World Down Syndrome Day, observed to help raise awareness of people with Down syndrome and the challenges they face, including a society that may not realize they are people who have hopes, dreams and desires.
If there is one thing Desrochers' mother, Barbara, would want people to know, it's that those with Down syndrome are capable of many things. They can live full, happy lives and even have successful relationships.
Her daughter and Sierra are good examples of that.

Saturday, April 6, 2013

Down syndrome doesn't deter young artists

from Evansville Courier & Press, NECN.com:
Down syndrome is no hindrance to the creation of art. That's the lesson seven area youths with Down syndrome are learning during an eight-week Art Smart class being taught by local photographer and artist Nikki Davis.
Davis, who is also interim director of S.M.I.L.E. on Down Syndrome, tells her students that art has no boundaries, no limitations and that artists use their creative vision to express their feelings or ideas.
S.M.I.L.E., is an acronym for Support, Management, Information, Love and Encouragement, a network and support organization for parents and families with Down syndrome children. Although the organization focuses on individuals with Down syndrome, the classes which explore different media — clay, acrylics, watercolors, pencils, charcoal and pastels — are also open to individuals with autism.
"Art provides one more avenue of ability, rather than focusing on a disability, it provides opportunity for creativity," Nina Fuller, founder and president of S.M.I.L.E, told the Evansville Courier & Press ( ).
As paint brushes swirled watercolors across paper, the budding artists learned to use bright colors, water and different types of brushes to create their own vision of landscapes.
"What's the first thing we learned?" Davis asks the students.
"Everybody's painting will look different" she and the students reply.
Davis, started the classes because she felt through art the students learn valuable life skills that can also translate into everyday life.
"I chose to pursue this as option for our members because art helps meet a number of goals that we have for our attendees. Art offers: physical and occupational training through improving motor skills, cognitive training by improvement of memory, prioritization, planning, organization, psychosocial training by improving interpersonal skills, expression of feelings and meets emotional goals by improving impaired control, by easing anxiety, and by giving our artists a sense of pride and accomplishment," Davis said.
Classes are held every other Monday, free of charge to participants at Wired Coffeehouse in downtown Evansville. Supplies are provided by SMILE with help from a grant from the Evansville Optimist Club.

Friday, April 5, 2013

Outlawing Abortion Won’t Help Children with Down Syndrome

by Allison Piepmeier from The New York Times:
My daughter, like all kids, is a delight and a lot of work. Now 4, she talks nonstop, although her speech isn’t always comprehensible. She reads. She performs class conversations for me: “What does a cow say? Moo. Great work, Maybelle!” This evening she sang me “I’m Just a Girl Who Can’t Say No” from “Oklahoma!” (a song that, in my daughter’s case, is clearly untrue because she excels at saying no).

Maybelle has Down syndrome, a condition I knew almost nothing about before she was born. During the four years she has been alive, I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high. The most recent research suggests that for every child born with Down syndrome, another is terminated. With the increasing availability of noninvasive prenatal tests that can take place within the first few weeks of pregnancy, many in the Down syndrome and disability rights communities fear that abortion rates will skyrocket, that a process often identified as eugenic will escalate, and that Down syndrome will essentially be eliminated — at least among those with the resources for prenatal testing and the desire to terminate.

That is why some parents of children with Down syndrome are celebrating the news that North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome. One parent wrote that “it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected.”

Thursday, April 4, 2013

Couple With Down Syndrome Says They Were Mistreated At Movie Theater

by Dianna Rocco from CBS Philly 3:
“It was going to be a special day; it was Anna’s birthday,” said Stefan Slowinski.
The 18-year-old had saved up his money to take his girlfriend, AnnaRose, to the movies for her 17th birthday, but it wasn’t the special day he had planned after the two accidentally sat in the wrong seats, and a manager asked them to move.
“I thought he was unfriendly and treated us the wrong way. He found two seats in the back of the theater. They were not together,” AnnaRose Rubright explained.
Anna and Stefan have Down syndrome, and the AMC theater in Marlton has a new seating policy that includes assigning a seat to each person with a ticket. While Anna and Stefan were in the right seat numbers, they were sitting in row D instead of C.
The teens’ parents say that instead of moving them to the proper seats, the general manager moved them to the back of the theater, on opposite sides of the aisle.
“They wanted to hold hands together like any other 18-year-old and 17-year-old couple does at the movie theater,” said Anna’s mom Lin Rubright.
When Anna got home that night, she was upset and told her parents what happened. They went to the theater to confront the general manager, who they say was unapologetic.

13 Things Never to Say to the Mom of a Child With Down Syndrome

by Jeanne Sager from The Stir:
People can say some of the most hurtful things to one another. Think you've heard some truly awful stuff?

Try being the parent of a child with Down syndrome.

Babies with Down syndrome are born with 47 chromosomes instead of 46, and the severity of their symptoms varies. But there are some pretty common physical signs that accompany Down syndrome, and that opens these kids -- and their parents -- up to everything from rude staring to downright cruel comments.

Sadly, some people don't even realize they're being offensive!

The Stir asked the parents of some children with Down syndrome to share some of the ridiculous comments they hear most often about their beautiful babies. If you've ever said anything on the list, consider this your notice not to say it again!

1. Oh, he looks so normal -- Normal as opposed to what?
2. I'm so sorry -- "What the hell are they sorry for?" asks Jennifer Lister, mom of little Riley, who refers to her daughter's condition as "Up syndrome." "For not being blessed themselves with a child who has UP syndrome?"
3. What's wrong with her face? -- Nothing! She was born that way!
4. She doesn't even look Downs -- Kids with DS aren't carbon copies of one another!
5. They don't live very long, do they? -- Actually, medicine and science have come a long way. According to the National Institutes of Health, "Although many children have physical and mental limitations, they can live independent and productive lives well into adulthood."

Wednesday, April 3, 2013

Basketball gives boy with Down syndrome a chance to be more than special

by Holly Simon from Chicago Parent.com:
The Oak Lawn Special Olympics Basketball Day has to be one of my favorite days of the year. Not only because my youngest son, Nathaniel, gets to play basketball with his friends, but because I have the chance to watch an amazing team of young athletes grow and learn together.
My son, 10, started with the Junior Jordans when he was 8. Not only could Nate barely hold the ball, but dribbling down the court was an impossible feat. Now one of my greatest joys is watching him dribble the ball all the way down the court with a smile on his face that reaches from ear to ear.
I am the proud mom of five kids. I have been to countless games. From basketball to rugby and a decade of volleyball. But on this day, everything you may have thought about winning or losing goes right out the door.
This day is about happiness. It's full of pure radiance from a child who can barely walk but gets the ball in his hands and guards it with all his might. It's about the child that was lifted over his head by a coach just to make a basket. It's about teamwork where an opposite teammate shields a smaller child from getting blocked. It's about acceptance, awareness, love, excitement and pure, raw pride.

Baby from Tampa crash that killed mother has Down syndrome

from the Tampa Bay Times by Jessica Vander Velde:
When Olga Valentin learned the baby growing inside her had Down syndrome, she cried and cried.
Soon, though, the 27-year-old came to regard little Nevaeh Pierce, born Oct. 1, as a blessing.
"She felt that God gave her this baby for a reason," said Valentin's sister, Sheila Mendez.
Early Monday, as Valentin drove across Hillsborough County to show off 6-month-old Nevaeh to a friend, she lost control of her car.
It flipped several times on State Road 60, near U.S. 301, threw her from it and landed atop her. Valentin died.
The baby was left with only scratches. Nevaeh had been buckled into a child safety seat in the back, authorities said — but Valentin had neglected to wear her own seat belt.
The infant is now with her father's sister in Mulberry.
That's because the father, 39-year-old Vidall Pierce, who is registered sex offender, is in the Pinellas County Jail facing charges of violating his probation on previous drug and bad check counts.
He called Valentin's family on Tuesday to say he hopes to care for the baby when he gets out of jail, Mendez said.

Tuesday, April 2, 2013

Dual Diagnosis of Down Syndrome & Autism

from NDSS by George T. Capone, M.D. Adapted From Disability Solutions Volume 3, Issues 5 & 6

During the past 10 years, I’ve evaluated hundreds of children with Down syndrome, each one with their own strengths and weaknesses, and certainly their own personality. I don’t think I’ve met a parent who does not care deeply for their child at the clinic; their love and dedication is obvious. But some of the families stand out in my mind. Sometimes parents bring their child with Down syndrome to the clinic—not always for the first time—and they are deeply distraught about a change in their child’s behavior or development. Sometimes they describe situations and isolated concerns that worry them such as their child has stopped learning new signs or using speech. He is happy playing by himself, seeming to need no one else to make the odd game (shaking a toy, lining things up) he is playing fun. When they call to him, he doesn’t look at them. Maybe he isn’t hearing well? He will only eat 3 or 4 foods. The suggestion of a new food, or even an old favorite, brings about a tantrum like no other. He is constantly staring at the lights and ceiling fans. Not just while they pass by, but obsessively. Getting him to stop staring at the lights is sometimes difficult and may result in a scene. He requires a certain order to things. Moving a chair to another spot in the room upsets him until it is returned to its usual spot.
Some families do their own research and mention they think their child may have autistic spectrum disorder (ASD) along with Down syndrome. Others have no idea what may be happening. They do know it isn’t good and they want answers now. This article is for families in situations like this and other, similar ones. If your child has been dually-diagnosed with Down syndrome and autistic spectrum disorder (DS-ASD) or if you believe your child may have ASD, you will learn a little more about what that means, what we are learning through data collection, and insights to the evaluation process.