Wednesday, December 31, 2014

Local trainer pays goodness forward

from local 12 WKRC CBS Cincinnati:
CINCINNATI (Liz Bonis) -- A local fitness specialist who has quite a story to tell is now helping others in a very unique way.

Josh Harris, a person trainer, said, "I was 335 pounds and I was struggling with addictions and all kinds of stuff that were negatives. I was able to turn it around. I lost 165 pounds and that's how I ended up here."

Hard to believe when you look at Josh now that he used to look very different. How's he doing now?

"I am great, I am great. Life is good; God is good," Josh told Local 12.

Josh made a decision recently he would pay that goodness forward in a very unique way. He launched a personal training program at no charge to those with special needs. That's how Josh met Chad.

Chad Meyer said, "He helps me learn nutrition, and how to use the machines."

"Chad just came in here and he gave his best. And he just continually gives his best week in and week out," Josh said.

Tuesday, December 30, 2014

Making Your Mark: Grocery dance

by LaSalle Blanks from ABC 13 News Now:
Virginia Beach -- A father, daughter dance isn't unusual. It is if it's in an aisle at the grocery store. That's exactly what happened when Dave Floyd took his 11 year-old daughter, Lauren, to Food Lion in Virginia Beach.
"That's a typical day at the grocery store," Dave said. "She wanted to dance and I pulled the phone out."
After posting it on Facebook, 24 hours later Dave's and his daughter's video had more than 30,000 likes.
"This just went crazy," Dave said. "I couldn't believe the reaction to a simple thing like shopping at the grocery store."
Dave hopes the video can help change perceptions. His daughter Lauren has Down Syndrome. But in the video, she also has a big smile, energy and joy. Dave wants people to see that in the video.
"I want them to see a typical child," he said.

Monday, December 29, 2014

Family that embraces daughter is great gift

by Hellen Middlebrook from Pacific Daily News:
For most of us, friends are a normal part of life. But what if your life isn't normal? And what if you aren't?
Deborah, our daughter with Down syndrome, has been growing up without friends. I know this is not the case for every child with disabilities; those who go to school usually experience some level of friendship. Deborah has been in similar settings, but these have not been enough to cultivate friendships.
In her almost 15 years, I've watched Deborah be patronized by adults and rejected by her peers. Adults often treat her as if she's a teddy bear -- something to hug and say nice things at. Very rarely do adults actually talk with her.
With the exception of one young lady who has left the island, those of her own generation have ignored her. If they do see her, they don't acknowledge her. Deborah has never been invited to a birthday party or an outing. But she has been told to "go inside" when others have been outside playing.
Such things are hard on a mother's heart.
I know it can be difficult to understand her; I know it's also difficult for her to keep up with a conversation. And I know if she is ever to have friends, it's up to me to create the situations to foster friendships.

Sunday, December 28, 2014

Central Florida Dreamplex opening for special needs families

by Roxanne Brown from Daily Commercial:
For years, pediatric physical therapist Amy Gomes has looked for a place in south Lake County where people with special needs can take classes, exercise, play, learn, spend time with their families and find employment.
Her search is finally over.The Central Florida Dreamplex, under the umbrella of the Central Florida Pediatric Therapy Foundation, will have a grand opening from 11 a.m. to 3 p.m. on Jan. 10.
“It’s a place for entire families to go and collaborate, even if it means that someone in their family is in a wheelchair, has autism, Down’s syndrome or whatever it may be that classifies them as special needs,” said Cameron Gomes, Amy’s son, who will manage the facility. “The main thing is it’s a place where everyone can feel like they fully belong and that it fits the needs of the whole family.”
At the Dreamplex, people will find a climbing wall, which will allow children to develop their muscles with the help of therapists or parents without reaching scary heights. There will be wheelchair-accessible fitness equipment and suspended equipment designed for children with autism or sensory issues.
Inside, a mirrored area will be designated for Taekwondo, ballet, tumbling and other lessons, plus a snack bar to serve healthy foods and juices.
The gym also will be available for use by family members without special needs while their children are taking classes or participating in scheduled activities.
“Parents can get their workout in while their kids are doing their thing, and get that out of the way,” Gomes said, adding he wants to start adaptive sports programs at a local venue such as wheelchair soccer and basketball.

Saturday, December 27, 2014

Down Syndrome Academy growth spurs expansion

Down Syndrome Academy growth spurs expansion
from The Observer &
The Down Syndrome Academy announced expansion of their post-High School educational and vocational facility for students with Down syndrome, increasing classroom capacity from 30 to 50 students.
The Down Syndrome Academy opened its doors in January 2014, and has seen steady growth as families seek much more than just a special needs day program.In attributing the Academy’s growth, founder and President Rosa Rocha says, “our unique curriculum endeavors to build on their High School education so they can reach their academic potential and apply it to a fulfilling work and social life. The social programs also help students and families navigate the tough transition to adulthood within a friendly and supportive community.”

Friday, December 26, 2014

Girl with Down syndrome gets new wheelchair, stolen one recovered

CORONA, Calif. >> A four-year-old girl with Down syndrome who had an highly-priced wheelchair stolen from the front of her households dwelling in Corona received a new one on Monday.
The Riverside Press-Enterprise reports a convoy of police officers delivered a new replacement wheelchair for Jocelyn Ordonez on Monday. Police vehicles rolled up to her residence with emergency lights flashing.
Police mentioned word about last weeks theft spread and they have been inundated with calls and emails with presents of assistance. The nonprofit group San Diego Down Syndrome utilised donations to buy the $2,500 replacement wheelchair for Joselyn.

Coincidentally, police received a tip on Monday and positioned the stolen wheelchair. Officer Jesse Cervantes says they dont have a suspect in the theft, but they plan to return it to Joselyn.

Thursday, December 25, 2014

Eleven, With Down Syndrome, and Still a Santa-Loving Little Girl. Maybe.

by Amy Silverman from the parenting blog on The New York Times:
I’m beginning to suspect that my daughter Sophie no longer believes in Santa Claus.
Sophie is 11 (or as she’ll quickly correct you, 11 and a half) and preoccupied with the trappings of tween life – One Direction, cheerleading, mascara, boys. She recently announced that purple is no longer her favorite; now she’s into blue, a “grown-up color,” she tells me.
In many ways, though, my little girl is still just that. A little girl. Sophie sucks her thumb and carries around an old, stuffed Piglet. I had to get her Velcro-fastened tennis shoes for cheer, since she can’t tie her shoes. And for years, she’s dictated her Santa letter to me each December, afraid, she explains, that he’ll never be able to decipher her handwriting. She’s right, her handwriting is terrible, despite years of therapy.
Sophie has Down syndrome.
My husband, Ray, and I didn’t know Sophie had it before she was born; she was the first person with Down syndrome I’d ever met, this tiny, jaundiced baby with squinty eyes and a bad heart. In those early days, after talking to nurses and friends, I pieced together a few “facts,” sort of a playbook on D.S. Nothing particularly useful, as it turned out, but all I could handle at the time.
Sophie would be cheerful and loving, and maybe a little stubborn. She would never drive a car. She would probably be the Homecoming Queen in high school. She would live with us her whole life.
And she’d always believe in Santa Claus.

Wednesday, December 24, 2014

New #IMREADY Campaign Pushes for Child Models With Disabilities to be Featured in Media

PHOTO: Ralph Lauren: William says #IMREADY for change. We want YOU to include models with disabilities in 2015.

Earlier this year, Target reached out to the Down Syndrome Association of Minnesota in search of a child model. On December 14, the discount chain featured two-year-old Izzy Bradley who has Down syndrome.
This sparked a social media movement aiming to encourage the inclusion of models with disabilities in advertisements.
Launched last month by Changing the Face of Beauty, #15in2015 is the campaign vying to get 15 retailers to use models with special needs in 2015.
"I reached out to the co-founder to promote models being in ads and she was completely on board,” said Heather Bradley, mom of Izzy Bradley. “We thought this would be a great way to capitalize on the positive response from Izzy, so we decided to move this forward by getting the attention of other companies.”
And it’s working: This morning, Infantino announced on Facebook that they are the first of 15 brands to accept challenge of including models with disabilities in 2015.
"We are committed to using models that reflect the same diversity you see on a playground. Check out our Facebook page to see our cutie cover model, who is rocking her extra chromosome." -Infantino Toys
To get involved, parents post photos of their children onto Facebook, while hashtagging #IMREADY and #15in2015.
“Since Izzy was in the ad, Heather and I thought why don’t we promote these kids and say, ‘we’re ready, it’s time,’” said Katie Driscoll, co-founder of Changing the Face of Beauty. “That’s how we launched the #IMREADY portion and it’s already gone crazy.”
In addition to Target, Nordstrom has advocated featuring models with all abilities in their ads.
In the past, Driscoll’s five-year-old daughter Grace, who also has Down syndrome, appeared in the holiday lookbook of Tori Spelling’s Little Maven collection.
“She my motivation behind this and behind the change, Driscoll said. “I think that advertisers need to realize that people with disabilities make up one of the largest minorities in the world. Target and Nordstrom really set the precedence of inclusion. I really think the more we recognize that, the more other companies will catch on.”

Here are some of the hopeful faces of #IMREADY:
PHOTO: @Sears Camden says #IMREADY to be the next fresh face for Sears! YOU and Camden can take us one step closer to #changingthefaceofbeauty and helping reach the goal of fifteen new retailers in 2015. 
Meghan Roberson
PHOTO: @Sears Camden says #IMREADY to be the next fresh face for Sears! YOU and Camden can take us one step closer to #changingthefaceofbeauty and helping reach the goal of fifteen new retailers in 2015.
PHOTO: Janie and Jack: Kate says #imready to be the next fresh face for Janie and Jack! 
Janessa Gross
PHOTO: Janie and Jack: Kate says #imready to be the next fresh face for Janie and Jack!
PHOTO: Jadons wearing Target in this photo and wants to follow in Izzys footsteps and model for the company. 
Sheryl Smith
PHOTO: Jadon's wearing Target in this photo and wants to follow in Izzy's footsteps and model for the company.
PHOTO: Dash challenges Boden to continue to be a leader of inclusion advertising! #15in2015 #thellenshow #Miniboden #Boden 
Kim Kann
PHOTO: Dash challenges Boden to continue to be a leader of inclusion advertising! #15in2015 #thellenshow #Miniboden #Boden
PHOTO: Hey Carters Thechildrensplace ToysRUs/BabiesRUs Old Navy Gymboree Macys BabyGap Carolynn says #IMREADY for change. 
Geralynn Moore
PHOTO: Hey Carter's Thechildren'splace Toys"R"Us/Babies"R"Us Old Navy Gymboree Macy's BabyGap Carolynn says #IMREADY for change.
PHOTO: Ralph Lauren: William says #IMREADY for change. We want YOU to include models with disabilities in 2015. 
Genevieve Brown
PHOTO: Ralph Lauren: William says #IMREADY for change. We want YOU to include models with disabilities in 2015.
PHOTO: Crayola, we are ready...are you? You can join the #15in2015 challenge and help by #changingthefaceofbeauty. Join us! #IMREADY 
Becky Carey
PHOTO: Crayola, we are ready...are you? You can join the #15in2015 challenge and help by #changingthefaceofbeauty. Join us! #IMREADY
PHOTO: Carter says #iamready to be the next fresh face for Gap. YOU and Carter can take us one step closer to #changingthefaceofbeauty and helping reach the goal of fifteen new retailers in 2015. #15in2015 
Stacey Calcano
PHOTO: Carter says #iamready to be the next fresh face for Gap. YOU and Carter can take us one step closer to #changingthefaceofbeauty and helping reach the goal of fifteen new retailers in 2015. #15in2015
PHOTO: Miles wants to model for Macys, Honest Company and Janie & Jack.  
Andrea Winkler
PHOTO: Miles wants to model for Macy's, Honest Company and Janie & Jack.

Tuesday, December 23, 2014

Champion gymnast with Down syndrome overcomes obstacles, inspires others

by Scott Stump from
For Chelsea Werner, gymnastics started as a way to develop more muscle tone, a symptom from her diagnosis of Down syndrome. But now the sport is a way for her to show others just how much is possible for other athletes with the disorder.
Werner, 22, has transformed from being unable to execute simple muscle maneuvers to a four-time national championship at the Special Olympics (she also has an international championship under her belt). The Californian's inspiring journey is the latest installment TODAY's "I Am Unbroken" series, which examines stories of perseverance like that of Louis Zamperini, the World War II hero profiled in the best-selling book "Unbroken," which now has been made into a feature film directed by Angelina Jolie.
"She has put in this many years and hours of gymnastics training and all those times when she didn't get a ribbon, and she kept going,'' Dawn Pombo, Chelsea's gymnastics coach, told TODAY. "She fits it to every aspect of what 'Unbroken' means.''

Monday, December 22, 2014

bakery seeks funds through crowsourcing, would provide jobs for those with developmental disabilities

by Larissa Mulkern from
WOLFEBORO — Professionally trained pastry chef Katie Johnson intends to raise more than just bread dough when she opens her new bakery, From Scratch Baking Co., this spring at 45 North Main Street.

Johnson, 29, a 2004 graduate of Kingswood Regional High School, intends to raise awareness and understanding by staffing her new business with workers with developmental disabilities. One of those workers will be her older sister, Kristin, who has Down syndrome but inspires Katie every day.
“I founded the bakery on the principle that while people with disabilities may have a unique set of challenges, they also have incredible talents and skills to offer the workplace.
“Kristin proves this every single day. She has taught me a lot about life and people — she’s very joyful. She tells is like it is.”
And Kristin happens to be very precise, a skill useful when measuring out ingredients, for instance, Katie noted during a recent tour of the new bakery location. Renovations are under way at the former site of the Evergrain natural food store.
Johnson said she chose to open as a business, rather than a nonprofit, to prove that working with people with disabilities is a viable business decision and does not need to be seen as charity. Her employees will work in baking, customer service and landscaping, with each employee matched with a role that aligns with their individual skill sets and talents.

Sunday, December 21, 2014

Sick kids flown to the North Pole for Santa

by Bill Kirkos CNN from WBST 42:
(CNN) -
While most children wait and hope Santa visits them at home on Christmas Eve, this year dozens of Denver-area children went directly to the big man's Arctic home turf.
The children, many of whom are being treated for serious illnesses or are victims of abuse or homelessness, were flown to the "North Pole" this holiday season on a Fantasy Flight.
The Fantasy Flight program began in 1992 at Washington's Dulles International Airport, and has since spread to Los Angeles and other airports around the country. Though the destination may be fantasy, the flight is not. Airline employees and retirees volunteer their time, and United Airlines donates the jets.
Children are selected from the Make-A-Wish-Foundation, children's hospitals and various youth social service establishments.

Saturday, December 20, 2014

Pope blesses special-needs child from Brownsville

A Brownsville family received blessings from Pope Francis on Wednesday at the Vatican—the same day as the Pope’s 78th birthday.
Two weeks ago, Dolores Zarate, wife and mother of two children, received the letter of a lifetime from the Vatican, which invited her family the be a part of the Papal audience.

Zarate had written a letter eight months ago and asked for a blessing from Pope Francis for her 13-year-old daughter, Zaraiah, who has Down syndrome, autism and seizures that affect her learning ability.
Zarate and her husband, Sergio, founded the non-profit organization Down by the Border to educate and encourage families of children with Down syndrome and other special needs. Sergio said his wife is determined to help their daughter overcome her battle to communicate.
On Wednesday, Dolores Zarate said she wished Pope Francis a happy birthday before introducing herself and her daughter. Zarate said Pope Francis bent down to kiss Zariah and said a prayer in Italian.
“Go in peace, yours is the kingdom in heaven,” Pope Francis said, before he reached into his pocket and presented the daughter and mother with a rosary.
In return, Zariah leaned her face against the Pope’s elbow and gave him a hug, something her parents said she never does.
A more complete version of this story is available on

Friday, December 19, 2014

Woman used daughter with Down syndrome to steal from Target

by Anthony Fay from 22 WWLP:
HADLEY, Mass. (WWLP) – Hadley police will be seeking an arrest warrant following a theft at the Hampshire Mall Target store, that was caught on surveillance video. Hadley police posted on their official Facebook page that they’re requesting the warrant for a 57 year-old woman from Agawam, who they say used her 25 year-old daughter (who has Down syndrome) to steal toys from the store.
Hadley police say that after a customer tipped them off to the theft, Target security reviewed surveillance footage, which showed the woman and her daughter placing toys into a carriage. The woman then allegedly left her daughter near an empty checkout lane, until a third person gave a signal once there were no nearby employees, and the daughter left the store with the merchandise.
Police say that the woman, whose name has not been released, was identified due to similar incidents that took place at stores in East Longmeadow and South Windsor, Connecticut. The warrant they are seeking is for the crime of larceny over $250.

Thursday, December 18, 2014


by Anna Bitong from Thousand Oaks Acorn:
Six-year-old Brianna Pitzele, who was born with Down syndrome, stood on the floor of the House of Representatives earlier this month and cast the final vote to pass the Achieving a Better Life Experience (ABLE) Act, which will allow people with disabilities to save money without losing government benefits.
Brianna’s father, Brad Pitzele, who advocated strongly for the bill, watched on Dec. 3 as his firstborn cast two votes in favor of the law on behalf of U.S. Reps. Julia Brownley and Cheri Bustos of Illinois, where Pitzele lived before moving to Thousand Oaks. The legislation passed overwhelmingly, 404-17, winning bipartisan support.
“I was overcome with joy,” Pitzele said. “There were tears streaming down my face. I was smiling and waving at her. She was blowing kisses at me and yelling ‘Daddy!’ from the floor up to me in the mezzanine.”

Wednesday, December 17, 2014

The Achieving a Better Life Experience (ABLE) Act Passed in Senate Tuesday

The Achieving a Better Life Experience (ABLE) Act Passed in Senate Tuesday
After Eight Years, Congress’ Most Bipartisan Bill Passes Set for a Presidential Signing
Washington, DC, December 17- Following overwhelming passage in the House of Representatives (404-17) last week, the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) passed the US Senate as part of the Tax Extenders Package last evening. The ABLE Act is the most bipartisan, bicameral bill before the 113th Congress. The President now has ten days to sign the bill for it to become law.
No other bill before the 113th Congress equals or surpasses the ABLE Act’s bipartisan and bicameral support - 77 United States Senators, including Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY), and the bill’s Senate Champions Bob Casey (D-PA) and Richard Burr (R-NC). In the House, 381 Representatives, including a dedicated set of House Champions - Congressman Ander Crenshaw (R-FL), House Budget Committee Ranking Member Chris Van Hollen (D-MD), House Republican Conference Chair Cathy McMorris Rodgers (R-WA) and House Rules Committee Chairman Pete Sessions (R-TX).
“Passage of the ABLE Act is a major victory for those with disabilities and their families,” Casey said. “This bill reminds us all that those with disabilities have a lot of ability. Soon those with disabilities and their families will be able to better save for their long-term care.”
“Some have called the ABLE Act the most significant piece of legislation affecting the disabled since passage of the American Disabilities Act nearly 25 years ago.  I got involved in this effort nearly 8 years ago with Senator Casey.  Families of severely disabled children came to us expressing the critical need for an easy way to save for their child’s future expenses, especially since many Americans with Down syndrome and autism are now outliving their parents,” said Senator Burr. “Most middle-class families don’t have the money to spend on lawyers and financial planners to set up sophisticated trusts to make sure that their disabled child will be OK long after they are gone.  What’s worse current federal law actually discourages parents from putting any assets in the name of their disabled child in fear of disqualifying them from federal programs down the road. It’s utterly unacceptable that our current laws doom a child born with a disability to a lifetime of poverty and dependence.  This is especially unfortunate when a parent or other family member has the resources and the desire to save and plan for that child’s future expenses but are advised by lawyers and planners not to.  The ABLE Act will take the first critical step in ending this injustice.”
NDSS has been one of the leading advocacy organizations behind the ABLE Act for over eight years and four Congress. Last week, ABLE House Champions renamed the landmark legislation to honor NDSS’ late Vice Chairman and chief ABLE Act architect Stephen Beck Jr., who passed away suddenly just days after the House passage. “The ABLE Act’s initial concept grew out of an idea around Steve Beck’s kitchen table, and now will be forever marked with his legacy,” said NDSS Chairman Rob Taishoff.
“The ABLE Act proves that people with disabilities and their families can make a difference. We fought long and hard to make the ABLE Act a reality for all people with Down syndrome and their families in this country,” said Sara Weir, NDSS interim President. “This landmark legislation puts a stake in the ground that people with disabilities, for the first time ever, can work and save money for the future. For NDSS, this has been a civil rights issue, and we can’t wait for President Obama to sign this bill into law.”
Under current law, they cannot have more than $2,000 worth of assets before critical government support programs they need are cut off.  In the face of enormous medical, transportation, and education costs, that amount does not extend very far and certainly hinders independent living.
The National Down Syndrome Society (NDSS), Autism Speaks and more than 100 other national organizations have endorsed the bill, which will ease the financial strain on families who have loved ones with disabilities.

About NDSS
The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community.

Thursday, December 4, 2014

Members Offer Rare Display of Emotion With ABLE Act

by Matt Fuller from Roll Call:
There are many votes members of Congress cast that mean absolutely nothing. Procedural motions. Uncontroversial bills and amendments that are forgotten as soon as they are voted on.
Then there are other votes — those constituents may never notice but that are, for some lawmakers, unforgettable.
On Wednesday, the House passed a bill, 404-17, that would establish tax-exempt savings accounts for individuals with disabilities. The bill, which is expected to pass in the Senate, exempts savings, up to certain levels, and distributions from those savings for individuals and families applying for means-tested federal programs.
Currently, people with disabilities can lose access to federal programs such as Medicaid or Supplemental Security Income once they establish a certain level of savings.
For those eligible, the so-called Achieving a Better Life Experience Act could mean a more independent life, making it easier to prepare for future financial needs. For certain members of Congress, the bill means actually doing something.
For the bill’s sponsor, Florida Republican Ander Crenshaw, the measure is an emotional victory.
“It just means a lot,” Crenshaw told CQ Roll Call Tuesday, choking back tears. “Helpin’ a lot of people.”
“I just see their faces and it just …” he said, trailing off.

Tuesday, December 2, 2014

URGENT: Call Your Reps & Urge Them to VOTE YES to the ABLE Act Tomorrow!

Down Syndrome Advocates:

Thank you for all the calls, emails, tweets and facebook posts over the last few weeks. We are closer than ever to the passage of the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313). 

We still need your help!

Please contact your Members of Congress TODAY by clicking the TAKE ACTION button below, and calling your Representative asking them VOTE YES on the ABLE Act on Wednesday!

Thank you for helping to #passtheABLEact!


Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Friday, November 21, 2014

Pope’s call to help the vulnerable turns to the autistic at Vatican conference

by Michelle Boorstein from The Washington Post:
57 countries will update one another on such issues as genetic research, pain management and government policies toward people with autism.
It will also begin with a Mass and a monsignor preaching on suffering and will include presentations on how the church can better include autistic people in the core aspects of Catholic life, such as the sacraments of confession and Holy Communion. It will end with an audience Saturday with Francis, an event advocates hope will significantly move the needle on awareness, particularly in Spanish-speaking countries.
Bob and Suzanne Wright, Catholics and co-founders of the major U.S. advocacy group Autism Speaks, will give a presentation at the conference.
“We speak at colleges and places like that, but they don’t reach large audiences,” said Bob Wright, former chairman of NBC/Universal and grandfather of a teenage boy with autism. “Then we started with the religious aspect, but the problem is there aren’t any leaders who have large numbers. Most religions are split up. We zeroed in on the pope, and this pope in particular, because he has such a gift for reaching out to people, and he wants the church to be more inclusive.”
Organizing any conference on autism — which affects one in every 68 children, according to Autism Speaks — is challenging because of the range of opposing views on such issues as the role of vaccines in autism spectrum disorder. The conference doesn’t appear to touch on vaccines but includes a presentation on other potential environmental impacts.

Thursday, November 20, 2014

Carly Booth still aiming to be world number one

by Jonathan Sutherland from BBC Scotland:
If it came down to self-belief, Carly Booth would already be world number one.
But, after a tough couple of years, the global ranking of Scottish golf's child prodigy is a lowly 441.
Now aged 22, she's ready for a re-launch, determined to climb to the pinnacle of her sport and confound the sceptics.
However, she also has another mission - to help her brother compete at the Special Olympics  next year.
Booth burst on to the Scottish golfing scene in precocious fashion, becoming the youngest ladies' club champion in Britain at the age of 11.
Two years later, she was asked in a newspaper interview where she saw herself in 10 years' time.
Her answer? World number one.

Wednesday, November 19, 2014

let's #passtheABLEact this year!

from the NDSS:

Great news... House and Senate Leadership continue to hear from the disability community that the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) must pass this year! Keep it up!

We need you to make four easy phone calls, tweets and posts to ensure ABLE gets scheduled for a vote!

Please contact the following Leadership offices (all templates are provided below):

Senate Majority Leader Harry Reid:
Leadership Office:
 (202) 224-2158
Talking Points & Sample Tweets

Minority Leader Mitch McConnell:
Leadership Office: (202) 224-3135
Talking Points & Sample Tweets

Majority Leader Kevin McCarthy:
Leadership Office: (202) 225-4000
Talking Points & Sample Tweets

Speaker John Boehner:
Leadership Office: (202) 225-0600
Talking Points and Sample Tweets

Thank you for all you do and let's #passtheABLEact this year!


Ginny Sessions Siller
Manager, Grassroots and Development Programming
National Down Syndrome Society

Friday, November 14, 2014

Disney’s next movie should have a princess with a disability

by Keston Ott-Dahl from The Washington Post:
As an adult on the rare occasions when I did encounter a person with Down syndrome or other disabilities, I chose to walk away for fear they might want to hug me or drool on me. In short, I was a despicable ableist and according to the International Journal of Humanities and Social Science and a study published by the Global Down syndrome Foundation, I was not alone. Discrimination against people with Down syndrome has been well known for centuries, and American history is full of horrid examples: the “ugly laws” barring disabled people who might be deemed “unsightly” from appearing in public; the story after story after story after story after story after galling story of abuse that still often goes punished.  
It never dawned on me that I was discriminating, and I never realized how awful I was or that I would someday be given a chance to be a better human being, which is a tale better left said in my memoir, “Saving Delaney, Saving Me.”
The Global Down Syndrome Foundation reports that it wasn’t until the 1980s that the vogue for institutionalizing Americans with Down syndrome began to fade and only today are researchers making more concerted efforts to unleash the amazing capabilities of people with Down syndrome.
Those researchers have made monumental strides. Today, with Early Intervention therapies and focused educational programs, it is common to read about people with Down syndrome  living on their own, getting married, and even owning businesses, driving cars, going to college, performing as actors, having careers, and working as activists for the Down syndrome community. Broadly speaking, people with intellectual and mental disabilities are increasingly joining the workforce.

Thursday, November 13, 2014

Boy with Down syndrome completes epic bike ride for charity

by Tyson Shine from Yahoo News:
A 12-year-old boy with Down syndrome has helped raised thousands of dollars for the Special Olympics riding from Tasmania's east coast to Hobart.

Sporting a flat tyre, Lucah Mathiassen and his mother Kristin were part of a team of four who completed the journey with a warm welcome in the capital.

The pair and a support crew took four days to ride the 280 kilometres from St Helens in the north-east.

"[We had] 35-kilometre winds straight in the face along the east coast, that was definitely a challenge," Ms Mathiassen said.

The ride raised more than $5,000 for the Special Olympics which offers an opportunity for people with a disability to try competitive sport.

"Lucah will be involved at some point, when he's a little bit older," Ms Mathiassen said.

"Here is a single mum with her son with Down Syndrome ... wanting to do a ride for her son to be able to compete in Special Olympics, but also raising funds for us as well," Special Olympics Tasmania manager Bernadette Black said.

Wednesday, November 12, 2014

Contact Majority Leader Kevin McCarthy to Bring the ABLE Act for a Vote!

Down Syndrome Advocates:

We need your help TODAY!

Please call and email Majority Leader Kevin McCarthy asking him to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) to a vote under suspension next week!

Contact Majority Leader Kevin McCarthy for his support! Call-in script and email template provided below.

Majority Leader Kevin McCarthy:
Leadership Office: (202) 255-4000

Email Template

TALKING points

-I'm calling to ask Majority Leader Kevin McCarthy to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) under suspension next week.

-As Majority Leader, we need his leadership to bring the MOST BIPARTISAN BILL up for a vote - the ABLE Act has 85% of the ENTIRE CONGRESS COSPONSORING IT - with 74 Senators and 381 Representatives cosponsoring.

-The House Ways and Means Committee already unanimously voted the ABLE Act out of committee.

-The Senate Finance Committee held a hearing on the bill and, in September, issued a press release outlining their intention to being the ABLE Act to a vote once Congress returns from recess and after the election.

Monday, November 10, 2014

Incredible dancer with Down syndrome pushes toward greatness

FOX 10 News |
from FOX 10 Phoenix:
MAHTOMEDI, Minn. (KMSP) - Mikayla Holmgren has been dancing since she was a little girl. When she's dancing, she's in her element. Just like any other dancer, she's pushed to be great, and her instructor says there's nothing she can't do. She has Down syndrome, and that's simply not a barrier in front of her path to success. Never nervous, the 19-year-old has her parents to thank for her confidence.

“The more knowledge you have about our children, you realize that what you believed 20 years ago that they weren't teachable was not true,” her mom Sandi Holmgren said.

"She knows a lot more than she can articulate sometimes, so that's part of it and I think that shows up in the physical things; she can just perform,” dad Craig Holmgren said.

Sunday, November 9, 2014

Girl finds best friend at K9 Country Club

from KREM2:
A business called the K9 Country Club in Spokane Valley not only houses and trains dogs, but they also help match them up with kids who have special needs.
It is a program that has made a big impact on one little girl named Ella.
"Ella is eight-years-old," said Ella's mother Kacey Bode. "She has down syndrome. She's a very fun little girl. She's the light of our lives."

Second grader Ella has no shortage of people loving her.
"All you can say is she is Ella!" Bode said. "She has so much personality."
Ella's energy is a great fit for a special pup named Luna.
"We started coming here about two months ago," Bode said. "It's been an amazing fit. Ella and Nick the trainer just hit it off."
"They have a very innocent, special, loving way to connect to the dogs," said K9 Country Club Trainer Nick Lungo. "If I can facilitate that, I feel like I'm using my gift."

Saturday, November 8, 2014

Seeing the light: One mother’s story of raising a child with Down syndrome

by Melinda Carstensen from Fox News:
As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.
When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.
But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.
“You just have this sinking feeling of dread,” LeVeque, now 43, told “I had this thing in my head— I don’t know where it comes from— maybe it’s pride: ‘I’m healthy. I went to an Ivy League school. I ran a marathon.’”
When LeVeque recounts receiving the prenatal diagnosis, and the days that followed, the word “fear” peppers her description.

Friday, November 7, 2014

New Concept in Kids' and Teens' Eyewear: Online Eyewear Retailer

from Digital Journal:
MIAMI, Nov. 6, 2014 /PRNewswire/ -- In response to seeing many children enter their optical shop at Miami Children's Hospital in Miami wearing ill-fitting eyewear, Ivonne Goldstein and her husband, Dr. Roberto Warman, an acclaimed pediatric neuro-ophthalmologist, are creating the next generation of online optical with their recently launched The site is the only online optical shop dedicated exclusively to kids and teens.
Logo -
Goldstein and Dr. Warman created the site when their optical shop of the same name – Optiwow – recently celebrated 15 years in business.  
Owners of Pediatric Ophthalmology Consultants at Miami Children's Hospital for more than 25 years, Goldstein, CEO of, and Dr. Warman created the site to offer kids and teens access to a reasonably-priced, large selection of attractive, well-fit, high quality, age-appropriate children's prescription eyewear. The site offers products including eyeglasses, sunglasses, sports goggles, swim goggles, diving masks, eyewear for kids and teens with Down syndrome, and much more.
Chosen by optical experts,'s online kids' eyewear selection is displayed on the easy-to-navigate website, allowing the customer to choose glasses based on a child's age and gender. The site also provides frame shape guides and a virtual try-on application to test the frame styles on the child's face. Each pair is custom created, custom fit with top-quality lenses, and quality checked by's licensed pediatric optical team. stocks and curates prescription eyewear from top designers of children's glasses such as Disney®, Miraflex®, Nike Vision®, Converse®, Lucky®, Guess® and Ray-Ban®. The site carries only the latest styles and highest quality lenses for children, and avoids scaled-down versions of adult eyewear styles, focusing on the brands that cater their designs to a child's needs. Discontinued styles and copies are never an option on

Thursday, November 6, 2014

4 Reasons Why Congress Should Pass the ABLE Act

by Mona McGee from E.D.Bellis:
Washington, DC is polarized due to the divided government and amidst all of the political grandstanding is a measure that could make a positive impact on many families. Even though there is unlikely to be much legislating until after the November election, this piece of legislation has bi-partisan support and could make its way into the lame-duck session.
The reason this piece of legislation would be helpful is because of the large financial strains on many people who have families with disabled members and this is compounded over-time. The indirect costs can be un-sustainable, and this will allow for more cost-effective budgeting should it be executed as visualized.

On September 19, Senate Finance Committee Chairman Ron Wyden (D-OR), Ranking Member Orrin Hatch (R-UT), Senator Bob Casey (D-PA), and Senator Richard Burr (R-NC) released a joint statement updating the public on the Achieving a Better Life Experience (S.313 and H.R.647) ABLE Act status.
They indicated that the Senate has generated momentum and positive progress on passage of the bill. The four Senators announced that as a result of bi-partisan collaboration, a policy agreement has been reached that will be the foundation for passing this legislation and obtaining Presidential signature in the lame duck Congressional session, which begins November 12, 2014.
Although no plan has been developed yet to pay for the $2.1 billion cost over 10 years, legislators are optimistic that agreement can be reached. The ABLE Act legislation, to allow people with disabilities to open tax-advantaged savings accounts, has been in development for eight years. This passage could provide some relief for the many families who struggle financially to save for and or finance the care for their loved ones.

The ABLE Act would allow people with disabilities and their families to save money in new tax-free “ABLE” accounts for any of the following disability-related expenses:
• Education, from pre-K to college
• Housing, be it for rent or for purchase as long as it’s a primary residence
• Transportation, including moving expenses
• Employment support, like job training
• Health, including insurance premiums and assistive technology like wheelchairs
• Miscellaneous items like financial management and legal fees
The IRS would treat ABLE accounts like existing 529 college savings plans (also known as qualified tuition programs): after-tax contributions would not be tax deductible but earnings would accumulate tax free and qualified withdrawals would also be spared.

Thursday, October 30, 2014

Kid Rock surprises fan, makes birthday wish come true

by Brian McCollum from The Detroit Free Press:
One Kid Rock fan just got a present he'll remember for many birthdays to come.
The Detroit star popped in on a 30th birthday party Monday for Dan McGurk, a diehard Rock fan who had been trying to get the musician's attention via letters and videos.
McGurk has Down Syndrome, according to Toledo's WTOL-TV, and had been working to get a party invitation onto Rock's radar for months.
Video of Monday night's scene was later posted to YouTube. As friends and family watch on at the Clarkston Union restaurant, McGurk lights up with surprise and delight as Rock strolls in singing "Happy Birthday."

Wednesday, October 29, 2014

Alun Rees had 'worst' pressure sores, Wrexham inquest hears

A man with Down's Syndrome had the worst pressure sores some medical staff had ever seen when he was admitted to hospital, an inquest has heard.
Alun Rees died from multiple organ failure due to an overwhelming sepsis infection a month after being taken to Wrexham Maelor Hospital in August 2011.
The 54-year-old had been cared for by his sister at their home in Brymbo since 1993.
The hearing in Ruthin was told the house was "not fit to live in".
Home Office pathologist Dr Brian Rodgers said it was his view that the sores had been present on Mr Rees's body for a period of time.
"They could have been there for weeks" he said, adding that some medical staff had documented that they were "some of the worst they'd ever seen".
Ambulance technician Douglas Green, who attended the home of Mr Rees and his sister, Brenda Griffiths, on the day he was admitted to hospital, told the hearing it was "not fit to live in".
He described it as cluttered with an "overwhelming smell" which he agreed was probably because of a "lack of hygiene and ventilation".
He told the hearing Mr Rees's sister had called the ambulance because her brother's breathing had changed, he was pale, weak and lethargic.

Tuesday, October 28, 2014

fourth-grader with Down syndrome wins self-advocacy award

by Elena Kadvany from Palo Alto Online:
Dashiell Meier might be Palo Alto's most accomplished 10 year old.
The Ohlone Elementary School fourth-grader with Down syndrome has been to Sacramento several times to advocate for Down syndrome awareness. This February, he traveled to Capitol Hill to meet with members of Congress as a representative of the Silicon Valley Down Syndrome Network. He also participated in the National Down Syndrome Society's annual Buddy Walk in Washington, D.C.
And since first grade, Dashiell has been an advocate, speaking to Palo Alto elementary school classrooms about his experience as a person with disabilities. He explains why he can't run as fast as other kids (common conditions of Down syndrome are weak muscles and joint instability) or what to do if someone can't understand what he's saying, since he has trouble enunciating (just ask him to repeat himself).
Dashiell, an infectiously positive and energetic boy, was this year nominated by two of his teachers for a national self-advocacy honor. The Council For Exceptional Children's "Yes I Can!" Award recognizes children and youth ages 2 to 21 with special needs who demonstrate achievement in one of seven categories: self-advocacy, academics, arts, athletics, school and community activities, technology and transition.

Saturday, October 18, 2014

Maryland Police Training Commission Adopts Training Objectives

by Kevin McManus from 930 WFMD Free Talk:
Proposals to help improve training of police officers when dealing with persons with disabilities were adopted last week by the Maryland Police Training Commission. The recommendations, from the Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities (the Inclusion Commission), are expected to be incorporated into training programs for law enforcement recruits, according to George Failla, the Acting Secretary of the Maryland Department of Disabilities.
"As we move forward with the next academy or set of academy training sessions for the new recruits, all different academies will need to meet these training objectives," says Failla.
The Inclusion Commission was set up last year by the Governor following the death of Ethan Saylor of New Market. He died following a struggle with off-duty Sheriff's Deputies who were trying to remove him from a movie theater. Saylor had Down Syndrome.

Friday, October 17, 2014

Splendid scenery on a winding road

My granddaughter, Lucy, has Down syndrome. When she was born 11 years ago and I heard these words, I was shattered.
Stereotypes take a long time to die. My head was full of them, despite knowing Chris McLean, who has Down syndrome and has been part of our extended family for more than 40 years, despite having watched the television series “Life Goes On” and seeing how much a person with Down syndrome can accomplish.
I boomeranged back to images I’d seen as a child and articles I’d read then, and worried about Lucy’s future and our future as a family. How could we live with fear and sadness and worry the rest of our lives?
The beginning of everything is the hardest. When you have a baby with Down syndrome, the beginning is extra hard. Doctors tell you all the medical issues that might arise with your perfectly beautiful newborn, and it’s overwhelming. If every baby placed in a mother’s arms came with a long list of life’s tragedies that statistically might happen, women would stop having children.
Eleven years later I’m aware that the journey has not been without challenges. Fear and sadness and worry come and go in everybody’s life. The difference is that life with a typical kid is like a ride on the freeway. There are some stops and starts, traffic, bridge repairs, closed exits, and there are accidents now and then, sometimes fatal ones. But mostly it’s 60 m.p.h., no detours, no traffic lights, no potholes.
Life with a kid who has Down syndrome or autism or Asperger’s or cerebral palsy or muscular dystrophy or anything that makes her different from most everyone else is like traveling a country road in Maine.
The road is narrow and it’s hilly and it twists and turns, and for long stretches you’re all alone on that road. And it’s always slow going, stop signs and animal crossings and sleepy little towns where the speed limit is actually enforced. And when it rains the road is slick and dangerous. And when it snows it is almost impassable. And sometimes you wish there were an exit to a well-lit, smooth, straight highway.
But there isn’t.

Thursday, October 16, 2014

WATCH: Heartwarming video shows officer giving NYPD hat to young fan in Times Square

A heartwarming new video is making the rounds of a NYPD officer doing a good deed. A young fan was left beaming.

In the video, one of the officers hands a boy with Down 's syndrome an NYPD cap. With the cap firmly on, the child then salutes the officers before walking away.

The video was recorded by a tourist from Brazil.

Wednesday, October 15, 2014

The Black Swamp Ice Frogs, a special education hockey team, received new training piece

by Natasha Ivery from The BG News:
A special education hockey team received a new piece of equipment in a special revealing ceremony that will help them avoid injuries and improve their game.
This Saturday, the Black Swamp Ice Frogs, the special education hockey team from the Bowling Green area, received a new piece of equipment called the Kaye Trainer that will help team members who are a little shaky on walking skills in moving around on the ice better and improve their skill in the University’s Ice Arena.
The Kaye Trainer was donated by Randy Young and his council in Baton Rouge, Louisiana. Randy Young is the past international president of United Commercial Travelers, a nonprofit financial service membership organization that supports causes and communities across America.
“The history of UCT is pretty extensive and there’s a lot of connections,” says young. “UCT was started in 1888 by two traveling salesman and dues were $5 that they placed in a jar to draw from when their families needed it. It’s grown into so much since then.”
Jen Chillinsky, community outreach manager for UCT, said UCT is an organization that provides a lot of services and is interested in various causes.
“Four years ago, UCT needed an organization to aid with intellectual and mental disabilities and we got involved with the Ice Frogs. Our first Winter Hockey Fest was held in Toledo, Ohio and to date we’ve raised $25,000,” Chillinsky said. “This January, our next Winter Hockey Fest will be in January in Bolencia, California. We host them and travel from the West to East coast each year. It’s an easy way for families who don’t have that much money to get involved.”

Tuesday, October 14, 2014

Bismarck parents buy coffee house for son’s future

by Karee Magee from The Bismark Tribune:
Sandy and Matt McMerty, like most parents, believe in setting the bar high for their three children in order to see them succeed. But for the McMertys, that meant buying a coffee shop in the Bismarck Public Library for their eldest son.
When Cristian McMerty, 13, was born with Down syndrome, the McMertys wanted to find a way for their son to succeed in life instead of being limited.
“You can set the bar low and reach it, but that’s a lot worse than setting the bar high and giving a person the chance to reach it,” said Sandy McMerty, marketing communication manager at the Department of Commerce.
After stumbling across Tim’s Place in Albuquerque, N.M., the McMertys were inspired.
Tim’s Place is a successful restaurant owned and operated by Tim Harris, a man with Down syndrome, where the slogan is “comfort, food, and hugs.”
“We thought, wouldn’t it be great if we had some type of business we could all run together,” said Matt McMerty, owner of a record management company, Docustore.
Years after deciding on what the McMertys call their “big dream,” they opened The Gifted Bean Coffee House.
The McMertys said they are hoping that if the coffee house works out, Cristian will be able to take over the business.
His parents said that he already wants to start.
“He keeps telling his teachers he can’t come to school today because he has to work,” Matt McMerty said.
The McMertys began speaking with the previous owner at the end of August.
Matt McMerty said he thought it would take about two years before they could purchase the business, but the owner wanted to sell immediately.

Monday, October 13, 2014

Ballet Dancer Gives Kids With Down Syndrome A New Hope Of Expressing Themselves Through Dance

from Superstar Magazine:
Colleen Perry was inspired by a magazine article to let kids and adults with Down Syndrome express themselves through ballet and hip hop dance. That’s how the incredible dance program called Free 2 Be Me Dance was born.

Sunday, October 12, 2014

Chatting with Kellie, a Disney Lover with Down Syndrome

Kellie’s mother knew that something was up.  It wasn’t like her daughter to complain about aches and pains, and she seemed to be getting sick all the time.  Normally she was as bubbly and chatty as any other eight year-old girl; perhaps even more so.  She usually relished any kind of outing, whether it be shopping or going out to eat, and struck up a conversation with every single person she met along the way, always with the same question: “Have you ever been to Disneyland?”  Kellie made friends everywhere!  Now she seemed to be tired all the time… too tired, even, for a day trip to her favorite place in the whole world: the nearby Disneyland theme park.
So, Kellie’s mother took her to see the pediatrician.  Along with the genetic disorder, Down Syndrome, Kellie had been born with a heart defect and had undergone open heart surgery when she was very young.  Evette wondered if her daughter’s symptoms were cardiac in nature but another, more frightening thought soon took hold.  “Could it be leukemia?” she asked the doctor, hoping and praying that she would say no.  After all, hadn’t her youngest child been through enough?
Instead of rejecting that possibility the doctor opted to do a blood test, which Kellie endured without a complaint.  That night Evette and her husband, Lance, anxiously awaited their daughter’s test results.  The next morning, the doctor called.
“Which hospital do you want me to send you to?” she said.
Kellie was admitted to Children’s Hospital of Orange County, near Disneyland.  Further tests of her spinal fluid confirmed that she had acute lymphoblastic leukemia (ALL), a cancer of the white blood cells, the cells in the body that normally fight infections.
According to the National Cancer Institute, ALL is the most common cancer in children, representing 23 percent of cancer diagnoses among children younger than 15 years of age.  It occurs in about one of every 29,000 children in the United States each year, with a somewhat higher incidence for children born with Down Syndrome.

Sunday, October 5, 2014

Beyond Awareness: National Down Syndrome Acceptance Month

by Meriah Nichols from The Huffington Post:
October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already.
We are aware.
We are aware that people with Down syndrome are the same as people without: deserving of equal rights, opportunities and privileges. We are aware of what features associated with Down syndrome look like, we are aware of discrimination and prejudice that is regularly leveled at people with Down syndrome.
We are aware that the world is not often kind to people with Down syndrome -- that people with Down syndrome can suffer horribly at the hands of people who do not accept them. Those hurting hands can belong to relatives, to members of the justice system, to acquaintances or strangers. Yes, we are aware of this, and perhaps this is partly the fear that keeps women from choosing to have a child with Down syndrome, perhaps this awareness does more harm than good.
I want us to try to move beyond awareness. I want us to move into acceptance.
Let's try to put our awareness into action and actively accept people with Down syndrome. Let's try and move two steps past our comfort zone, whatever that might be.
Are you uncomfortable around people with Down syndrome? Let's be honest here. If you are, go ahead and challenge yourself to just go up to someone with Down syndrome, look at them and greet them from your heart. A sincere "hello".
And then move forward.

Saturday, October 4, 2014

10 things TO SAY when a baby is born with Down syndrome

A while back I posted 10 things not to say to a parent of a child with Down syndrome.
Someone emailed me a day or two later.
“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”
I was touched by this person’s desire to learn about such a delicate subject.
I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.
Here’s my list of 10 things to say to when a baby is born with Down syndrome
10. How are you doing?
After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”

Friday, October 3, 2014

Easing into Eugenics: Forecasts of a Diminshed Down Syndrome Population

by Stephanie Petroni from
In examining the evolution of society’s treatment of those who experience perceived disabilities- intellectual or physical, it would seem that progress has been significant. The last institution in Ontario that warehoused almost 2, 000 people with developmental disabilities was closed in 2009. Individuals were relocated to their original communities where most will live out the rest of their days in small group homes or in fewer cases, with family. The educational system and workplace are striving towards inclusive environments and there is an increase in government support for individuals so that people of all abilities may fully participate in all aspects of community.
However, various Down Syndrome organizations, as well as many self-advocates, have been sounding the alarm on the topic of pre-screening for the extra 21st chromosome during pregnancy.

Thursday, October 2, 2014

Dementia in those with Down syndrome now twice as likely

by Christina Finn from

THE PREVALENCE OF dementia among people with Down syndrome has almost doubled, according to a new study by Trinity College’s School of Nursing and Midwifery.
Dementia has increased from 15.8% to 29.9%, according to the second wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (TILDA).
This is a much higher level than those seen in the general population.

Intellectual disability 
Not only has the prevalence almost doubled, but the study, which is the first one in the world to include people with a intellectual disability (ID) into a long term ageing study, shows that the average age of the onset of dementia for people with Down syndrome is 55 years old, with some cases presenting in their 40s.
By comparison, the majority with dementia in the general population are over 65 years of age.
Osteoporosis has also doubled since the first wave of the report three years ago. It has doubled from 8.1% to 16.4% for those with an ID. The study showed that nearly 70% who took part in the health assessment study had poor bone health, which the report states indicates a high level of under diagnosing.
There was also a 50% increase in cataracts.
Other findings show that those with an ID are less like to suffer from other conditions.
Rates of hypertension were more than 50% lower in the ID group (17.5%) than those in the general population (37%).

Wednesday, October 1, 2014

Helping children with Down syndrome to develop clearer speech


DSE Logo

Helping children with Down syndrome to develop clearer speech
People with Down syndrome often struggle to express themselves clearly. This can be frustrating and a significant obstacle in daily life and in education. Speech clarity is one of the most common concerns identified by families of children with Down syndrome.
To help children with Down syndrome develop clearer speech, we are developing new, evidence-based resources to practice speech sound recognition, discrimination and production, combining speech sounds, and saying and repeating whole words and phrases.
See and Learn Playing with Sounds iPad edition
DSE's See and Learn Speech resources begin with See and Learn Playing with Sounds, offering activities to expose young children to individual speech sounds, to teach them to distinguish between sounds and to encourage them to imitate and practice saying individual sounds.
Next, See and Learn Putting Sounds Together provides activities to help children practice saying simple vowel-consonant combinations and symbolic sounds.
NEW EDITIONS AND APPS COMING SOON - New versions of See and Learn Playing with Sounds and See and Learn Putting Sounds Together will be available both as apps and as printed kits in late October.
See and Learn Saying Later Words iPad edition
Following from See and Learn Putting Sounds Together, See and Learn Saying Words offers activities to practice saying whole words in sets of words beginning with the same sound.
Research suggests that repeated practice saying whole words can improve speech clarity for young people with Down syndrome. Together with See and Learn Saying More Words and See and Learn Saying Later Words, DSE's speech resources offer structured activities to encourage regular speech practice.
AVAILABLE NOW - Our new See and Learn Saying Words, See and Learn Saying More Words and See and Learn Saying Later Words apps are available to download now for iPads, Android tablets and Windows 8.1 tablets and PCs. Our apps include both UK and US English resources, guides and record forms.
UK English printed editions of See and Learn Saying Words, See and Learn Saying More Words and See and Learn Saying Later Words are also now available to order from our UK online store. (Printed US English editions will be available soon from our US online store.)

Saying Words

Saying Words
See and Learn Saying Words provides simple activities that encourage the imitation and repetition of one- and two-syllable words. It includes eight sets of words, each starting with a speech sound that usually develops early in typical development (b, d, m, p, y, n, w and h).

Download from Google Play
Download See and Learn Saying Words on the App Store
Download See and Learn Saying Words from the Windows Store

Saying More Words

Saying More Words
See and Learn Saying More Words continues to introduce target words representing a range of vowel-consonant combinations and vocabulary suitable for younger children and likely to follow developmentally from those introduced in Saying Words (c/k, ch, f, g, r, t and v).

Download from Google Play
Download See and Learn Saying More Words on the App Store
Download See and Learn Saying More Words from the Windows Store

Saying Later Words

Saying Later Words
See and Learn Saying Later Words includes activities to practice six sets of one or two syllable words beginning with sounds that typically develop following those introduced in See and Learn Saying More Words (sh, th, s, z, l, and j).

Download from Google Play
Download See and Learn Saying Later Words on the App Store
Download See and Learn Saying Later Words from the Windows Store

See and Learn Speech webinar

Join us on Friday for a free webinar to learn more about our See and Learn Speech resources and how they are designed to help children with Down syndrome develop clearer speech.

Find out more...

Support better education for children with Down syndrome
For over 30 years, DSE has advanced our understanding of the needs of children with Down syndrome and pioneered better teaching approaches.
Our research and resources help over 130,000 people in over 190 countries worldwide each year. Our work for young people with Down syndrome and their families around the world depends on the generous support of our donors.
We need your support to fund vital new research, to develop and evaluate new and improved teaching resources, and to develop and provide more effective training for teachers, teaching assistants and therapists.
Help us ensure a better future for children with Down syndrome today.




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