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


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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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