Thursday, January 31, 2013

woman with Down syndrome accidentally called radio station bullied by DJ

A 30-year-old woman with Down syndrome accidentally called into a radio show and her family says the bullying that followed was unacceptable. Kellie Baker mistakenly called the The Mo Show on Q92 in Alliance on Jan. 21 looking to speak with her friend, Kelly Ann Burkhart.


Wednesday, January 30, 2013

Social Security Administration’s Ending the Use of the “R-word”

from The Arc:
In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.
This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law.  In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws.  The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.
“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.  This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible.  And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.
The proposed regulation published today has a 30 day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

Tuesday, January 29, 2013

is Miralax bad for you?

Since it was first introduced 13 years ago, a drug called Miralax — an odorless, tasteless laxative that can be easily diluted in orange juice or water — has become a staple in many American households.
But the way many families use Miralax and its many generic equivalents has strayed far from its original intent. The Food and Drug Administration approved the drug for use only by adults, and for only seven days at a time.
Instead, Miralax has become a long-term solution for childhood constipation — a problem that can be troubling not just physically, but also emotionally — rather than a short-term fix so that parents can change their children’s diets to include more fruits and vegetables.
“I’ve had kids on it daily for years,” said Dr. Scott W. Cohen, a pediatrician in Beverly Hills, Calif., adding that he will generally refer them to a specialist in prolonged cases. For children with chronic constipation who are not being helped by dietary changes, “We literally give it like water.”
No studies have shown that the drug’s active ingredient — polyethylene glycol 3350, or PEG — has severe side effects. But there is a growing chorus of questions about why it has been used and prescribed for children for so many years.
Last week, for example, the Empire State Consumer Project, a New York consumer group, sent a citizen petition to the F.D.A. on behalf of parents concerned about the increase in so-called adverse events related to PEG that health professionals and consumers have reported to the F.D.A. over the past decade.
The warning label on Miralax does not reflect a known risk to children. It means only that no long-term studies that meet the F.D.A.’s standards have been conducted on children using Miralax and its generic counterparts, which work by drawing water into the colon. However, discussion groups on many Web sites suggest that thousands of parents have questions and concerns about it, including the effects of long-term use.

Monday, January 28, 2013

United States Department of Education Guidance Calls for Leveling the Playing Field for Students with Disabilities

from Special Olympics:
US Department of Education Guidance
On 1/25/13, the United States Department of Education (DOE) released new guidance to schools and school systems throughout the nation that receive federal aid about the requirements of providing quality sports opportunities for students with disabilities.
While the guidance does not make new law, it does identify the responsibilities that schools and school systems have under section 504 of the Rehabilitation Act. The key messages in the new guidance could be summarized as the following:
  • Every school child with a disability must be  evaluated as an individual relative to their sports and physical activity participation. No generalizations about the ability of a child or children who have disabilities in the same category are permissible. 
    • Reasonable accommodations for children with disabilities to participate in sports activities are required; the basic nature of a sport does not need to be compromised under this guidance, but where reasonable accommodations do not alter the nature of the sport, they should be made. 
    • School districts and schools must provide aids and services to enable students with disabilities to participate if the lack of such aids and services would not permit participation.
    •Exclusion of students from sports activities is not permissible.  Therefore, if children with disabilities cannot be accommodated within existing programs, alternatives need to be developed. 

    • Acknowledging that there are safety issues involved in youth sports, schools need to determine if adjustments in existing programs can be reasonably accomplished without creating real safety issues for other students that cannot be mitigated.  This would be a rationale for creating separate sporting opportunities for youth with disabilities in such instances. 

Sunday, January 27, 2013

cigarette barbarity for child with Down syndrome

from The Telegraph India:
A two-year-old with Down syndrome is battling for life after being allegedly burned with cigarette butts by a woman faith healer who inflicted the torture in the name of curing him.
“I was shocked to see fresh scars of burning by cigarette butts on the child’s tummy. I counted 11 such scars on his body and there were several others that were caused several months back. This shows he has been going through this for quite some time,” said Dr Abdul Rasheed, the paediatrician treating the child.
The burning continued over months on the toddler, born to poor and illiterate parents from Kangan in central Kashmir, Rasheed said. Other doctors recalled having come across several similar cases of torture inflicted by peers, spiritual leaders often involved in occult practices.
In this case, too, the parents have not approached the cops so far. “No case has been registered as the family is unwilling to approach the police. In fact, they virtually worship her (the faith healer) and are not willing to name her,” Rasheed said.
The family has admitted taking the boy to the woman peer in Bonigam village, not far from their home in Murgund village in Kangan.
But Rasheed said the family was reluctant to reveal the ordeal to avoid landing the woman in trouble.

Saturday, January 26, 2013

Perscription for a Pet PigL "Twinkie" helps boy with Down syndrome

A South Florida family went hog wild, after they were allowed to keep their pet.
"She calms him down when he's very agitated," said Heather Ray. "He does get very agitated easily. She helps as a calming effect to him. She gives him the acceptance that not all special needs people really get in our society unfortunately."
She is six pounds and totally house broken. She uses the kitty litter and is fully equipped with a tail that wags, and now she is an official emotional therapy animal for her pal Kason, who was born with Down Syndrome.
"I think that's the most important thing for me as a mother," said Ray, "To see him get that unconditional love and acceptance."
A dog or a cat were out of the question because Kason's dad has severe allergies. Miniature pigs however are hyper-allergenic.
Two months ago, the fight started at City Hall. "City ordinance does not allow pigs as pets," said City Attorney, Bob Goehrig. "Pigs are considered live stock."
Two months later, the threat of $500 a day fines is finally gone thanks to a doctor's prescription for a Juliana pig, Twinkie can officially stay.

Friday, January 25, 2013

The Perfect Toy for a Child with Special Needs

from Lisa of Differently the Same:
As a mother of a child with special needs, I’m always on the lookout for toys that will help my daughter.  This past Christmas as I was pushing my cart full of gifts through Toys ‘R Us, I stumbled upon one of the best toys for fine motor and cognitive development.  It’s called the Super Sorting Pie.  It comes with a colorful assortment of fruit, a pie divided up into sections and tweezers.  This activity is great because the tweezers are a bit of a challenge to pinch together, making it the perfect strengthening activity for those little hands.  It also teaches color and fruit recognition and can be used for introducing math concepts.  Math for my daughter has proved to be difficult since it is so abstract for her. When I find a toy like this that turns counting, making patterns, adding and subtracting into a grand game, it’s the ideal gift for my girl.
I know that my daughter, Megan has a tendency to get a little…..out-of-sorts, if you will, when new concepts are introduced which manifest themselves as a challenge.  Avoidance behaviors rear their ugly head and teaching her anything becomes next to impossible.  However, we all know, the more fun you make learning, the more engaged and willing children become.
It was extremely exciting watching Megan Christmas morning tear the Super Sorting Pie box right open!  She was more than eager to play with this terrific toy that would secretly teach her important concepts. Over the last month we have made countless pies together. Without any help from me, I have watched her successfully sort the fruit.  We’ve counted the fruit.  We’ve matched the colors.  We’ve learned how to pinch those tweezers real hard, giving her the tight grip needed on those little fruits so that she can pick them up and transfer them into the pie victoriously!
Megan is a girly girl and loves to pretend she is cooking.  ”Baking a pie”, in this case, a Super Sorting Pie, is pure entertainment in her recipe book for learning. You know what’s fabulous about this? She has no idea there is anything being taught because she is having such a pleasant time doing it!  As a result, no avoidance behaviors!  And no avoidance behaviors means she is open to what is being introduced.  Learning is happening!
It’s a win-win situation!
Smiles for all.

Thursday, January 24, 2013

Owen Groesser makes 3-pointers & SportsCenter!

from ESPN:
Middle schooler with Down Syndrome, Owen Groesser, makes SportsCenter's Top Plays after draining two 3-pointers.
Owen Groesser enjoyed a night to remember, and took Twitter by storm in the process.
Groesser, a junior high student with Down syndrome, made a pair of 3-pointers in his school's basketball game Wednesday, prompting a Twitter campaign that resulted in a highlight on "SportsCenter."
According to ABC affiliate WXYZ in Detroit, Groesser had not played this season for Van Hoosen Junior High School, which was playing its season finale Wednesday.
But after entering late in the game, Groesser received a pass beyond the arc and sank a 3-pointer, sparking a wild celebration in the stands. Groesser also made another 3-pointer, finishing with six points in approximately two minutes of playing time.
After the game, Groesser's friends and teammates launched a Twitter campaign called #GetOwenOnSportsCenter, which trended as highlights of the game spread on the Internet.
The campaign was a success, as Groesser's exploits were featured on "SportsCenter's" Top-10 highlights Wednesday night.

Robert Griffin III Helped An 8th Grader With Down Syndrome Get On SportsCenter
Owen Groesser is an eighth grade basketball player with Down Syndrome from Rochester Hills, Michigan. He had not played all season until his coach had him play the final two minutes of the team's final game. Owen made the most of his two minutes sinking two three pointers.
Friends and family then started a movement on Twitter to try and get Owen on SportsCenter.
One person reached out to Robert Griffin III through Twitter and RG3 forwarded (retweeted) the message to his 780,000 followers. And sure enough, Owen came in at #10 on SportsCenter's "Top 10" and later he and his father were interviewed.
There are a lot of bad things on Twitter. But there are also a lot of great things. Here's the "Top 10" clip as well as a shot of Owen and his dad being interviewed...

Down syndrome: Nutrient-dense foods are best

from Daily Nation by Sona Parmar Mukherjee:
I seem to be seeing a lot of children since I reopened the clinic and yesterday, I saw a little girl with Down syndrome.
Down syndrome is a condition where a baby is born with an extra 21st chromosome. Most experts believe that this extra chromosome changes the normal development of the brain, which then leads to various mental and physical problems. It’s because of this that children like Juliet tend to be at a higher risk of certain health concerns.
The first is something that you probably wouldn’t have expected: children with Down syndrome are more likely to be overweight. They tend to burn calories at a slower rate and many are diagnosed with an under-active thyroid (which can further contribute to weight gain).
The best way to avoid unnecessary weight gain is to feed children nutrient-dense “real” foods and limit junk foods. As a rule of thumb, buy food that is grown rather than manufactured; so, plenty of fruit and vegetables. Since digestive issues are common in children with Down syndrome, a truly digestible diet can go a long way in preventing or treating yeast and/or constipation issues as soon as they appear.
Another common digestive issue is GERD or gastroesophageal reflux disease. Symptoms range from heartburn and sore throat, to regurgitation and chest pain. Common trigger foods include citrus fruits and foods high in sugars and fat (chips, biscuits, ice cream, fatty meat).
Children with Down syndrome are also more likely to suffer from a gluten intolerance or coeliac disease. Gluten is a protein found in wheat, barley, oats and rye, and an intolerance to it causes damage to the lining of the small intestine, which in turn affects absorption of vital nutrients.
For this reason, it’s best to wait until a child’s digestive system is more developed before introducing these foods, usually around 18-24 months. You may find keeping a food diary invaluable during this time. (Diarrhoea, stomach ache, bloating, irritability, rashes and mouth sores are possible symptoms.)
Gluten aside, some research in the US has shown that most children with Down syndrome are also lactose-intolerant, and do better on a milk-free diet. Dairy produce also increases the production of mucous, which can increase nasal congestion and the tendency to bronchial infections, both of which are more prevalent in children with this condition.
As I explained to Juliet’s parents, the idea is to create a good nutritional foundation. As Juliet grows and becomes more independent, she’ll have to be able make the right food choices on her own.
If you have an older child (Juliet is six years old), start slowly, making subtle changes to their diet. A total overhaul is likely to lead to resistance, whereas small, gradual changes will make it easier both on the child and the rest of the family.
Postscript: It is generally accepted that Down syndrome is a fait accompli, that little can be done to help the situation. It’s just a matter of accepting your child for who s/he is.
Enter the work of a small group of motivated parents and doctors in the US and Canada. They claim to have shown that if nutritional intervention is started early enough, growth rates and cognitive development could be normalised, and many of the physical and mental features of Down syndrome partially prevented or improved. If you would like more information on this, please do get in touch.
The writer is a clinical nutritionist and certified by the Nutritional Therapy Council in the UK. Please direct any questions about family nutrition to her on

Wednesday, January 23, 2013

waiter refuses to serve customer who insulted boy with Down syndrome

from Fox news:
A Houston waiter's Facebook page has been inundated with friend requests and messages after a story of how he stood up for a special needs child went viral.
Michael Garcia, a waiter at Laurenzo's, was serving a family who have been regulars since the restaurant opened. The family includes 5-year-old Milo, who has Down syndrome.
"Milo wasn't being bad, he was just talking and making little noises," Garcia told But a customer at a nearby table who was also with his family began making comments about Milo.
The customer got up from the table and moved his family to another table further away from Milo, but still in Garcia's serving section.
Garcia said the man continued talking about Milo and said, "special needs children need to be special somewhere else."
"My personal feelings took over because that's ignorance in my opinion and I told him 'Sir, I won't be able to serve you,'" Garcia tells
The man and his family got up and left the restaurant, while Milo's family was unaware of the incident at all.
"Maybe there were other ways I could have handled it, but Milo is such an angel, he is a gift from God as are all special needs children," Garcia said.
Garcia did not tell Milo's family of the incident because he didn't want to cause them any pain. He compared his actions to wanting to shield someone and said he hopes someone would do the same for his family. Another server told Milo's family what Garcia had done.
"We can't lose track of what this is about," Garcia said about the amount of attention the story has gotten.
"It is about Milo, it is about educating ourselves and when people are different, why should you treat them any different?"
"It's fear of the unknown," he said.'s Alexandria Hein contributed to this report. 
Read more:

Tuesday, January 22, 2013

My Brother Used to Have Down Syndrome

By Eva Glettner from the Huffington Post:

I can't tell you how happy it makes me to read that Kara Marcum is going to be homecoming queen at Bolivar Central High School. This speaks volumes for the entire school. I am personally invested in this story. My brother, who is almost 30, has Down Syndrome. But before you start feeling bad for him, there are a few things that you should know. Jacob is THE MAN. Seriously. With his Ray Bans, Penguin shirts and New Balance sneaks, Jacob is cool to the max. He works out at the local gym and has the guns to prove it. Everyone is smitten by his infectious attitude. Jacob is always smiling and just grateful to welcome each day as it comes. His stint at a local coffee shop translated into almost immediately higher sales.

I'm not going to lie. When I was little, I remember thinking "I wish I didn't have to bring Jacob along" to movies, the park, anywhere. But that thought was fleeting because my friends were so welcoming and loving. They would ask "are you bringing Jacob?" They looked past his speech impediment and his somewhat awkward gait and just saw him for what he is: absolute goodness. If anyone in public ever made Jacob feel uncomfortable, my friends and his friends were the first to step up. As my parents carted him to various therapies and doctors appointments, Jacob continued to get more and more awesome. His favorite movie growing up was "Muppets Take Manhattan" and we both learned the dialogue by heart after one-too-many viewings. "You hear that New York, the frog is staying!" was a quote that, to this day, is still stuck in my head.

Jacob really is taking the world by storm as we all knew that he would. He's a big social media guy and let it be known that he invited me to join his Google Plus circle before I even set up an account. He has over 1,000 Facebook friends and that number grows by the minute. When one of my blogs was entered into a contest, he rallied up enough votes for me to win the thing. Jacob is a powerhouse.

He is so great with his niece and nephews. The greatest thing about children is that they see him for who he is (as my dear childhood friends taught me many moons ago). They welcome him, they smile with him and they laugh. Oh, what a laugh. When Jacob smiles, it is more of a guffaw. My children have asked me why "Uncle Jakie" as he is affectionately called, "speaks different." I remind them that we all have different struggles and needs and that's what makes us special. I like the term "special needs" so much more than "disabled." Jacob isn't "dis" anything.

Jacob has taken his driver's written permit test thirteen times. But he does not give up. He studies the practice tests daily. It is his hope to one day drive a car, even though I have told him countless times that there is nothing worse than driving in LA. He's also stubborn. He will only go to special needs events if he is the counselor. You see, according to Jacob, he "used to have Down Syndrome when he was little." He's outgrown it and I love him for that. He works at a local private school, and he lists his job title as "Assistant Director" on his Facebook page. And you and I know that he is such a valued asset to the team, next year he might be promoted to Director.

I don't tell him enough how truly cool he is. Jacob, you are most certainly the man. I have four brothers and we all agree that Jacob is the most responsible and organized sibling of the bunch. No doubt about it. Thanks for continually reminding us what's important in life. Keep laughing, bro. 

Follow Eva Glettner on Twitter:

Monday, January 21, 2013

Student with Down Syndrome Crowned Homecoming Queen

kara marcum

by Adm Hammond from WREG News Channel 3:
You can tell by her shoes Kara Marcum loves sparkly things, and Friday night Kara may trade in those sparkly shoes for a shiny tiara if she is elected homecoming queen.
The Bolivar High senior class is rallying around this special needs student by voting her to the homecoming court.
Kara told News Channel 3 she is happy and excited about the honor.
She says her dress is black but the other details are still a secret.
Caleb McKinney is Kara’s escort for homecoming court.
“She makes everybody’s day better and this is just giving back to her I guess because she deserves it,” said McKinney.
He says she brings the entire school together, and the fact that she’s on the homecoming court shows the school’s kindness and acceptance.
“I feel really privileged and blessed to be a part of this because she’s just a great person, and I wouldn’t want to walk out anybody but her,” said McKinney.
Kara’s teacher Angela Galloway says her sense of humor, charm and positive attitude got Kara the votes and made her a role model for other students.
“She just brings everyone together and it’s great to see everyone embrace her no matter what’s going,” said Galloway.
Kara tells News Channel 3 she would be excited if she won the crown, and it would complete this homecoming fairytale for her.

Sunday, January 20, 2013

Poetry reading features author with Down syndrome

Teresa Murray, 25, will read from her new book – “Attitude to Gratitude” – Sunday at 4 p.m. at Slice of Heaven. 

by Margo Sullivan from the Jamestown Press:
Teresa Murray knows she is about to turn some heads when her friends in Jamestown find out she has published a book of poetry.
Murray, 25, of Jamestown, was born with Down syndrome, a genetic abnormality. Down syndrome patients have an extra – or part of an extra – chromosome, and the condition usually causes developmental delays. But recent studies also have focused on patients with exceptional literary abilities, whose powers with the written word are comparable to the drawings and other accomplishments of savants.
Murray, who attended the Jamestown schools and graduated from North Kingstown High, may someday find a place in that special group with literary gifts. She says she is the first person in her family to publish a book of poems, and that’s saying something in a family with a record of high achievements.
Her grandfather, Dr. Joseph Edward Murray, performed the first successful kidney transplant and won the Nobel Prize. He died recently, and one of her poems, “Fragile,” delves into her feelings about losing him and her maternal grandmother, who also died recently.
Her grandfather saved her life, she said, because he arranged for heart surgery when she was an infant.
“I would not be here without him,” she said.
Murray said it’s hard to answer when asked about why she writes. She started writing because she had been unable to pray, she said.
“It’s not because what I wanted was to actually feel God,” she said. “You can’t actually hear him because he’s not co-existent where I was. Where I would talk to him, most of the time, I’m always asking

God, ‘Can you do this? Can you do that?’ That is not what God wants you to do.”
She said God wants people to pray for others, not for themselves. Poetry has become her way to pray, as she believes God wants.
“I cannot be told what to pray, and I cannot...” She stopped for a moment to find the right words. “To me praying is like going outside and clearing your head.”
In writing down her observations about nature and in images, she has been able to capture her ideals.
Murray has been working on the book for three years, according to Mary Wright of Jamestown.
Wright edited some of the poems to correct errors in grammatical tense. She and Murray collaborated on one poem, which they will perform in tandem at a poetry reading Sunday at Slice of Heaven. Wright will read the lines she wrote, and Murray will read the lines she penned. Murray will also read some selections from her book, “Attitude to Gratitude,” which include some lyrics on overcoming a disability. The event will take place from 4 to 5 p.m. While the event is free, Wright said it would help her organize if those interested RSVP by calling her at 741-9818.
Murray started writing poetry five years ago after attending a workshop, “Power of the Poets.” Lisa Starr, then the state poet laureate, created the workshop and took it on the road around Rhode Island. Murray was attending weekly Learning Unlimited classes at Salve Regina, and when the workshop came to the university, the organizers invited the Learning Unlimited class to come by. Heather Sullivan, another Rhode Island poet, was also involved with the workshops.
Murray liked the workshops, which met once a week on Thursday nights, but her first poems weren’t successful. “I was not good at it initially.”
But she kept trying and found she had something to say. “It’s kind of like you have an epiphany,” she said.
Murray remembers she wondered if it was all God’s idea.
“Was this your idea, God?” she said. “To help me find my place and other ways to express myself?”
She finds many ideas for poems from observations on her walks around town.
Murray is the daughter of Joseph Link Murray and Karin Murray of Jamestown, and she wants her parents to be proud of her, she said.
“They are the best parents anybody ever had,” she said. “I feel like I have to keep my end of my ballgame up. My other siblings are very successful. My sister is a doctor and my brother is a consultant. I basically am in Jamestown and doing stuff that pleases me. This book is the biggest thing that ever happened to me.”
Murray said the book represents proof she has done “something right” by her parents.
“I’m their first child who actually published a book,” she said. Murray hopes her poems will help other people with disabilities, and even change attitudes about Down syndrome.
Murray calls Wright her editor, mentor and friend.
Wright said she once asked Murray what it was like to have Down syndrome. Murray had assured her she could ask her anything about her condition, Wright said.
She described the experience of having Down syndrome vividly, Wright remembers.
“It’s like having a hammer without the nails,” Murray told her.
According to Wright, Murray lives between the two worlds of Down syndrome and ordinary life. She sometimes becomes upset when she sees people discourage disabled people from trying, but added she understands the temptation.
“I can see the qualities of a Down syndrome child,” Murray said. “The special feature is around the face.”
She said she sometimes labels herself as well, but she understands the consequences. If she accepts the Down syndrome label, she doesn’t try as hard.
“My parents always raised the bar,” she said.
Wright said she doubts there is anything Murray cannot accomplish.
“When I first met her she was in first grade,” Wright said. Murray defied everyone’s expectations then.
“Teresa was one of the first to learn to read,” Wright remembered. She was in a regular classroom and working with a specialeducation aide. She stayed in regular classrooms all through high school.
“From my perspective, I don’t think there is anything Teresa can’t do if she decides to do it.”
Murray lives independently and holds down a job at McQuade’s Marketplace. She has plans to publish more writing.

Saturday, January 19, 2013

Taipei opens store staffed by people with Down syndrome

By Huang Chung-jung and Jake Chung from The Taipei Times:
The store is the city’s 41st sheltered workshop and is to provide employment opportunities for more than 600 people with the Down syndrome.
The Taipei City Government yesterday unveiled its 41st sheltered workshop with an opening ceremony at the Nangang Exhibition Center MRT station, hoping to provide more employment opportunities for the physically or mentally challenged.
Ai Bu Luo Suo (愛不囉嗦), meaning “love is not troublesome” is the name of the new store, with its English name being “Abrazo,” meaning “to embrace” in Spanish.
The store embodied the spirit of “Abrazo” that “to love [someone] is not troublesome; just embrace [them,]” city officials said.
The store also marked the first joint venture between the city government and the Down Syndrome Foundation of the R.O.C. as the city government has contracted the foundation to manage the store.
Down syndrome is a condition caused by an abnormality of chromosome 21 at birth. While the syndrome sometimes manifests physically — in alteration of the appearance of some facial characteristics or delayed physical growth — it also delays cognitive ability.
The store is expected to provide employment opportunities for nearly 600 people who are physically challenged, Taipei Mayor Hau Lung-bin (郝龍斌) said at the event.
Hau expressed his gratitude to the volunteers who have helped make the store a reality, such as Lien Hwa Co, which provided the store and its employees — consisting of patients with Down syndrome  — with the nation’s first automated noodle maker.
Meanwhile, Taipei Department of Labor Commissioner Chen Yeh-hsin (陳業鑫) said that over the Lunar New Year holidays, there would be a variety of products made by people who are physically challenged.
For example, bakeries under the Children ARE US Foundation will be offering a special package priced at NT$499, Chen said, adding that other products, such as egg rolls, coffee beans, creme brules, chocolates and discounts for stationery, would also be available.
People who are interested can check out for more information.

Friday, January 18, 2013

man with Down syndrome, forced from theater, dies

from the Frederick News
State and county officials are trying to determine why a developmentally disabled man died Saturday after off-duty sheriff's deputies tried to remove him from a Frederick movie theater
The Frederick County Bureau of Investigation and the Maryland Office of the Chief Medical Examiner are investigating the death of Robert E. Saylor, 26, of New Market, after he suffered a medical emergency at the Regal Cinemas Westview Stadium 16, a Frederick County Sheriff's Office news release stated.
Saylor had Down syndrome, according to Cpl. Jennifer Bailey of the sheriff's office.
A theater employee asked the off-duty deputies for help at about 11 p.m., saying Saylor had already watched a movie and was refusing to leave one of the theaters, the news release stated. The deputies were working for Hill Management at the Westview Promenade shopping center.
The employee said Saylor needed to leave the theater or pay for a new ticket, the release stated.
When the deputies spoke to Saylor, he refused to leave and he cursed at them, the release stated. After several minutes, they removed Saylor from his seat to escort him out of the theater.
Saylor continued to resist and was handcuffed, the release stated. When he suffered a medical emergency in the theater, the deputies immediately removed the handcuffs and called for emergency medical assistance.
Saylor was taken to Frederick Memorial Hospital, where he was pronounced dead.
A cause of death has not been determined, according to the release and the medical examiner's office. Bureau investigators attended the autopsy in Baltimore and were conducting follow-up interviews with witnesses Tuesday.
The sheriff's office did not release information before Tuesday at the request of Saylor's family, Bailey said.

Thursday, January 17, 2013

Boys 6 and 7, Stand Up For Sisters with Down Syndrome

Screen shot of the Facebook video: "Hollis Boys, 6 and 7, "Speaking up for our sisters" against hate"
Two young boys in Illinois took it upon themselves to stand up to bullies in a video that has gone viral on Facebook.
Posted to Facebook and YouTube in September of 2012 by Everyone Matters, at, a "global inclusiveness campaign" that fights for equality, the video titled "Hollis Boys, 6 and 7, "Speaking up for our sisters" against hate," has spread world-wide. 

It stems from an April, 2011 vandalism of the family car and home, when hateful messages were spray-painted one night, because two daughters in the family have Down Syndrome.
Since the video was published online, has spread on Facebook through 365,000+ likes and over 150,000 shares.

(editor's note: video contains graphic language spray-painted on house)

Wednesday, January 16, 2013

Surf event raises awareness for Down syndrome

Article Tab: Jeremy Fraser, 11, of Tustin gives a thumbs up  after riding his surf board during the Surfs Up for Down Syndrome at the Huntington Beach Pier last year. The event is put on by the International Surfing Museum, and Rex and Jennifer Hudler's Team Up for Down Syndrome.
Jeremy Fraser, 11, of Tustin gives a thumbs up after riding his surf board during the "Surfs Up for Down Syndrome at the Huntington Beach Pier last year. The event is put on by the International Surfing Museum, and Rex and Jennifer Hudler's Team Up for Down Syndrome.
By Laylan Connelly from the Orange County Register:
If you want to see what pure happiness is, come down to Huntington Beach on Jan. 19 to watch as a group of very special people experience the thrill of catching a wave.
The second annual Surf's Up for Down Syndrome is an event that brings together the surf community, a great cause that gets kids and adults with Down Syndrome on surfboards. Everyone from pro surfers, to junior lifeguards, to pro baseball players come out to support.
The event was created by Rex and Jennifer Hudler, who started the nonprofit Team Up for Down Syndrome in honor of their son Cade, 16, who was also among the group of surfers with big smiles on their faces as they learned to surf last year. Rex Hudler is a former pro baseball player and game announcer.
Spectators can come watch the surf event at 9 a.m., where surfers will meet with volunteers on the sand to get into wetsuits and learn the basic lessons before getting in the water. Volunteers surrounded the surfers, so when they took a spill they could lift them up and get them right back on the boards.
"We're here to lift them up, to raise them up," Rex Hudler said at last year's event.
Surfers who help out with the lessons include women's World Tour competitor Courtney Conlogue, pro Danny Nichols, champion Jericho Poppler, and local hero David Nuuhiwa.
The surf event and fundraiser party later at 4:30 p.m. that day at the Waterfront Hilton is co-hosed by the Rex and Jennifer Hudler's Team Up For Down Syndrome and The Friends of the Huntington Beach City Junior Lifeguards.
There are still tickets available for the fundraiser, which will draw hundreds of locals from the community together to help support of education and services for children who have special needs, as well as the Junior Lifeguard programs and scholarships.
At the fundraiser, there will be a cocktail hour and music by Cali Conscious, dinner and auctions where attendees can bid on everything from surfing and baseball memorabilia and more. The night will wrap up with music by the Chantays.
Funds from the event will go to The Friends of the Huntington Beach City Junior Lifeguards, a non-profit that raises money for the junior lifeguard program, which celebrates its 50th year anniversary this year. It will also raise funds for scholarships and a new surf program for youths with Down syndrome.
The surf and beach activities are free, and tickets for the event at the Hilton run $125 per person, with only a limited amount still available. More info: or call 714-665-8326.

Tuesday, January 15, 2013

Defending Kids with Down Syndrome: A Life Lesson on Vacation

from Time Health & Family by Bonnie Rochman:
On vacation last week in Hawaii, my family took a break from snorkeling azure waters to make a run for shave ice. (For the uninitiated, shave ice — Hawaiians drop the “d” — is the Rainbow State’s superior version of snow cones, powdery crystals that savvy foodies douse with exotic fruit syrups like passion fruit and guava.) Then we joined scores of other care-free kids and parents to stroll the main drag of the touristy former whaling town where we’d gone for our dessert fix.
The sidewalks were packed. We saw Steven Tyler in a shark-tooth shop (for real!). My husband spotted my older daughter’s first-grade teacher. And my 10-year-old son wandered into a store targeted ingeniously for boys his age, with whoopee cushions and T-shirts featuring silly, inane slogans.
As he laughed his way through the shop, I wandered in after him only to come face to face with what can best be described as the section of the store that makes fun of people with intellectual disabilities. One shirt read “No, I’m not retarded.” The other had a cutesie drawing of a schoolbus and was captioned, “My mom tells me I ride the little bus because I’m special.”
I froze. I looked around to see if any other adults had read the T-shirts and shared my disbelief. As I was still processing the messages on the shirts, another family ambled in. With them were their children, including a son with Down syndrome.
I felt panicky. As a mother, I wanted to turn those T-shirts around so that the other mom, the one who gave birth to a boy with Down syndrome and is doing her best to raise him in a society that is not always kind, wouldn’t see them and be forced to worry on vacation about the way our culture treats children like hers.
But I wasn’t quick enough. The family was heading straight toward those shirts. Flustered, I barked at my son, who hadn’t seen the shirts, to come outside. “We can not stay in this store,” I told him sharply.
My son and my daughters, ages 5 and 7, were confused. “This store is making fun of people with Down syndrome,” I told them. What’s Down syndrome? asked my kids. I explained to them that people with Down syndrome are born with an extra chromosome and that chromosomes help determine how people think and act and look, what they like and dislike, what they’re good at and what’s a struggle for them. The extra chromosome that people with Down syndrome carry makes their brains work differently than most people, I told my kids; it also makes it more likely that they’ll have trouble with their hearts. They are slower to learn things so that a 10-year-old with Down syndrome may or may not know how to read. They may grow up and not be able to live on their own and get married. Or, I told them, if they get the right support and help they need, they could also go to college and have their own children.
I didn’t tell them that children born today with Down syndrome enter a world of early interventions and expert medical care that continues to improve the quality of their lives. Nor did I share that this is happening just as a battery of new prenatal tests are increasingly able to detect the condition earlier and earlier in pregnancy, allowing women to potentially terminate affected pregnancies sooner. That was far too sophisticated a conversation to have. Instead, we focused on how to treat people with respect regardless of what they look like.
Being different is not a reason for ridicule. It was an important lesson, albeit one I wish I hadn’t had to teach. If you see someone being mistreated, I told my children, you stand up for that person.
I wish I’d done that, wish I’d had more presence of mind at the time and marched up to the saleswoman to let her know that messages of disrespect directed toward people with mental retardation are unacceptable.
That’s exactly what the mother of the boy with Down syndrome did, her voice trembling, as my family and I watched from the open-air entryway.
As one mom to another, I couldn’t help but tear up. I offered a big smile and thanked her for speaking out as she walked toward the sunset with her family, holding her son’s hand tightly.

Monday, January 14, 2013

New comprehensive Down syndrome program

from News 8 WTNH by Jocelyn Maminta:
It is a one of a kind program and Connecticut Children's Medical Center came up with it. It's a comprehensive outreach for families with children with Down Syndrome.
Louisa Knapp is among the hundreds in Connecticut born with down syndrome, a genetic disorder that affects a child's development.           
Louisa's family is among a growing number discovering the newly launched Comprehensive Down Syndrome Program at Connecticut Children's Medical Center.
"How's your hearing," asked Dr. Greenstein.
Dr. Robert Greenstein heads up this first of it's kind program in the state.
"This would make available in a timely manner the kind of services that are necessary to improve the health of the child and therefore reduce the anxiety among the family," said Dr. Greenstein.
A huge void until now, with services specifically tailored to address the special needs of a patient with Down syndrome which can be misdiagnosed, delaying treatment.
"Can I see your teeth please," asked Dr. Greenstein.
For Louisa, a stuffy nose led to surgery after Dr. Greenstein recommended a specialist.
"He managed for her to be seen by someone who is now with this program who is very comfortable with kids with down syndrome and understood the unique needs and she had her tonsils and adenoids removed and it was life changing for her," said Sheryl Knapp, Louisa's mother.
At this visit, the concern is Louisa's hearing, a common problem among patients with Down syndrome.
"She often says I can't hear you or say that again. I don't know if she really can't hear or if she's just saying it," said Knapp.
Getting her hearing tested with an audiologist is now on Louisa's schedule.
"There's an expectation that you have to find out how much you can but it also comes with an emotional upheaval as well for families," said Dr. Greenstein.   
What's offered here is a big relief for families like Louisa's, looking for a central resource to meet all the needs for children with down syndrome.

For more information, visit

Sunday, January 13, 2013

Why Down Syndrome Boosts Susceptibility to Other Conditions

from Science
A study led by UC Irvine researchers has revealed some of the underlying neural factors that explain why people with Down syndrome are more susceptible to Alzheimer's disease, diabetes and autistic spectrum disorders. Jorge Busciglio, associate professor of neurobiology & behavior, and colleagues analyzed the cellular and molecular mechanisms leading to oxidative stress and mitochondrial dysfunction in individuals with Down syndrome.
They found that this breakdown in energy metabolism within brain cells contributes to the higher probability of these other conditions.
Down syndrome occurs when a person has 47 chromosomes instead of the usual 46. Estimates suggest that 25 percent or more of individuals over 35 with Down syndrome show signs of Alzheimer's-type dementia. This percentage increases with age.
The incidence of Alzheimer's disease in people with Down syndrome is roughly three to five times greater than in the general population. Pablo Helguera, Jaqueline Seiglie and Michael Hanna of UC Irvine; Jose Rodriguez of UCLA; and Gustavo Helguera of Argentina's University of Buenos Aires also contributed to the study, which appears in the Jan. 8 issue of Cell Metabolism and was supported by the Larry L. Hillblom Foundation and the National Institutes of Health.

University of California - Irvine (2013, January 10). Why Down syndrome boosts susceptibility to other conditions. ScienceDaily. Retrieved January

Saturday, January 12, 2013

UK Govt Grossly Under-Reports # of Babies with Down Syndrome Babi Aborted

by Dr. Peter Saunders from
Some of the most common congenital abnormalities accounting for abortions in England and Wales are ‘trisomies’, in which there are three copies of one particular chromosome rather than two.
The most common trisomies are Down’s syndrome (trisomy 21), Edwards’ syndrome (18) and Patau syndrome (13).
But how many of each are aborted?  Well it depends very much on who you ask.
The National Down Syndrome Cytogenetic Register (NDSCR) was set up on 1 January 1989. It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down’s, Patau and Edwards syndromes diagnosed antenatally or postnatally.
Its 2010 annual report was published in December 2011 and is available here.
In 2010, 1,868 Down’s syndrome diagnoses were made, 1,188 (64%) prenatally and 680 (36%) postnatally. Of the 1,188 babies diagnosed prenatally 942 were aborted, 25 miscarried or were stillborn, 52 were born alive and in 167 the outcome was unknown.
Of the 466 babies diagnosed prenatally with Edwards’ syndrome 344 were aborted. Of those 191 babies diagnosed prenatally with Patau syndrome 151 were aborted.
So in total, according to the NDSCR, there were at least 942 babies with Down’s syndrome, 344 with Edwards’ syndrome and 151 with Patau syndrome aborted in 2010.
This gives us an overall total of at least 1,437 abortions of babies with one of the three conditions. I say ‘at least’ because the NDSCR estimates that a substantial proportion of those babies with trisomy with ‘unknown’ outcomes were also aborted.
But if we go to the Department of Health’s abortion statistics we get a different story altogether.
The Abortion Statistics for England and Wales in 2010 were published in May 2011 and are also available on line.
But they tell us (Table 9) that in 2010 there were only 482 abortions for Down’s syndrome, 164 for Edwards syndrome and 51 for Patau’s syndrome. Together these made up 30% of the 2,290 abortions carried out for congenital abnormalities (ground E) in that year. But the total with one of these three conditions is only 697.
The disparities are astounding. 740 babies aborted with one of the three trisomy conditions, or 51.5% of the NDSCR’s total of 1,437, were apparently not reported by the Department of Health. For Down’s syndrome 460 out of 942, or 49%, were not reported.
If the NDSCR statistics are accurate, and there is no reason to doubt them, then this means that the Department of Health is being notified about less than half of the abortions carried out for trisomy 13, 18 or 21.
Does this mean that doctors are knowingly falsifying abortion certification forms by neglecting to put down the true diagnosis for babies with congenital abnormalities? Or are they perhaps, possibly even deliberately, mis-classifying them as abortions on mental health grounds? Or are they just not bothering to report at all?
Is this possibly even evidence of a failure of abortion reporting on a much greater scale?
Might this be an under-reporting problem that goes much beyond babies with trisomy conditions? Might it actually be that only half of all abortions for any fetal abnormality are being reported?
Is it even possible that this degree of under-reporting operates across other categories of abortion, perhaps even all categories? In other words might the Department of Health figures be grossly under-reporting the total number of abortions in England in Wales?
Whatever the truth of the matter is, the disparities in the figures are alarming and need to be investigated urgently. Note: Dr. Peter Saunders is a doctor and the CEO of Christian Medical Fellowship, a British organization with 4,500 doctors and 1,000 medical students as members. This article originally appeared on his blog. He is also associated with the Care Not Killing Alliance in the UK.

Friday, January 11, 2013

Ninth Annual Trisomy 21 Symposium

Ninth Annual Trisomy 21 Symposium
Saturday, March 16, 2013

Trisomy 21 is the most frequently occurring chromosomal abnormality, found once every
800 to 1,000 live births. However, both pediatric and adult clinical care continues to
present significant and unique challenges.

Children with trisomy 21 are at higher risk for congenital heart disease, gastrointestinal abnormalities, endocrinologic disorders, epilepsy, musculoskeletal issues that affect motor abilities, hearing loss, speech apraxia, sleep disorders, feeding disorders, and developmental disabilities, including learning disabilities, mental retardation and autism. Deficits in any of these areas can adversely affect the child’s development and adaptive behavior.

This one-day symposium will provide parents and healthcare professionals with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of trisomy 21.

Presentation Summaries:

Dental Management of the Patient with Down Syndrome (Trisomy 21) Angela Stout, D.M.D., M.P.H. - This presentation will discuss various dental characteristics and
anomalies that exist with patients who have Down syndrome and will review tips for the parent and caregiver to maintain good oral health for their child/patient. Several treatment options
and behavior management techniques will be offered to guide and assist the parent/caregiver to get their child/patient through dental examinations and treatment.

Promoting Health and Mental Wellbeing in Individuals with Down Syndrome: Lessons Learned from the Adult Down Syndrome Center of Advocate Lutheran General Hospital Brian Chicoine, M.D. - Dennis McGuire, Ph.D.Drs. Chicoine and McGuire will discuss findings from a multidisciplinary clinic serving the health and psychosocial
needs of over 5,000 teens and adults with Down syndrome in suburban Chicago. They will discuss the interaction of physical and mental health conditions and discuss ways to reduce the risk of mental health/behavioral conditions. They will also discuss health promotion strategies and behavioral characteristics that are adaptive.

Monica Walters Martinez and David Martinez Self-advocates and Stars of the HBO Documentary, Monica & David Moderator: Ali Codina - Monica & David is a documentary that explores the marriage of two adults with Down syndrome and the family that strives to support their needs. Monica and David are blissfully in love and want what other adults have — an independent life. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.