Friday, May 25, 2012

teen with Down Syndrome graduates with standard diploma

from 12 by Beth Shelburne:

Allison Gabriel is a young woman who has dreamed big since she was little. This girl with a big smile is a lot of things--daughter, sister, friend to many.
Allison's strengths have always been the focus in the Gabriel house, because even though Allison has Down syndrome, her parents say it's no big deal.
"Not everyone in this world is perfect. In fact I don't know anyone who's perfect other than Jesus and so... She is who she is," Allison's mom, Susan, said.
 Allison had to work extra hard to pass her exit exams to achieve her goal of graduating with a standard diploma. But despite that achievement, when you talk to Allison, it's never about her.
When asked how she feels about graduation, she said, "It feels great... And I like to be with my sister."
"She does have a heart like Jesus," her mom says. "I mean if you do something to offend her and she gets her feelings hurt often, if you say I'm sorry it's over with."
This compassionate young woman rises to the occasion, because her parents, Susan and Harry, expect her to.
Whether it's a beauty walk or playing basketball at Northridge High School, anything Allison has wanted to do, they've encouraged her and asked others to give her a chance.
Susan says Allison's success is in part thanks to her community.
When Allison was just six weeks old, she started early intervention at the University of Alabama Rise school.
"I think living in Tuscaloosa really, you are kind of at an advantage because when Allison was born Gene Stallings was here so his son was here and it was just people accepted things better," Susan said.
Allison's classmates love her, and what a gift she's given them: a lifetime of open hearts thanks to their time together over the years.
"She knows no boundaries and knows no limits," her dad Harry said.
And she got there with grace and the strength of her family's unconditional love. A big congratulations to Allison. The skies the limit.

see the video here

Tuesday, May 22, 2012

Dreams come true for a special couple

from by Alex Consiglio:
Michael Arruda put on his best suit three years ago on Christmas Eve, got a ride over to his lifelong friend's home and had her roused from a sound sleep at 12:01 a.m.
Melissa Mancini came down her winding staircase in her robe to find Michael down on one knee with a dozen red roses and a wedding ring.
"What are you doing here?" she asked. Then, suddenly, she realized her dreams were coming true.
Michael and Melissa were married today at St. Catherine of Siena Church in front of more than 400 people.
They are a unique couple. They both have Down Syndrome.
The couple, who have known each other since they were 2-years-old, left the church in a horse and carriage. They rode back to Melissa's father's home behind the Trillium Health Centre.
"Wooooooo, we're married," yelled Melissa, 25. "We did it!"
Melissa said the horse carriage ride back — despite the "stinky" smell — was "amazing and beautiful." It was just what she always dreamed of since deciding more than a decade ago that she would marry Michael.
They've been dating for seven years, but Ellie De Sousa, Michael's mother, said the two have been taking about getting married since they were just 12.
"Michael was always chasing Melissa around," said De Sousa. "Melissa wouldn't give him the time of day until she began to be interested in men, and then it was settled."
De Sousa said Melissa and Michael first met when she founded Peel's Caring Network for Challenged Children with Anna Mancini, Melissa's mother.
The two have been inseparable since.
Moving forward, the newlyweds will alternate living in the Mancini and De Sousa homes, month by month.
"I wasn't nervous at all," said Michael. In fact, his mother was probably more nervous than either him or Melissa.
"I'm married!" yelled Michael, a big smile on his face as he held Melissa's hand.
For their honeymoon, the newlyweds will first head to Niagara Falls before flying to the Dominican Republic, where Melissa's sister will be joining them.
"She won't be sleeping in my room anymore," said Melissa, pointing out to her mother Anna that she's now a married woman.
"It's a real fairy tale story," said Anna.

Click here for wedding photos!

Monday, May 21, 2012

dancer with Down syndrome wins gold at regional competition

Many people with Down syndrome are described as having a lack of coordination — but Royal Oak resident Ryan Dupuis, 24, proves that wrong.

Dupuis has been dancing for the past 18 years, and while attending Royal Oak High School, he was on the varsity cheerleading team.

He is the only student at Juliana’s Academy of Dance in Madison Heights with a disability. Yet, he was selected by the owner to be a co-instructor for a boys hip-hop class.

Last week, Dupuis competed at the senior division of Star Systems National Talent’s regional competition in Sterling Heights, against more than 70 adults, where he won a gold trophy for his solo dance of “Party Rock” by LMFAO. He is now qualified to compete in the national competition in Las Vegas at the end of June, and it was the first year Dupuis performed in a competition.

Juliana Pirpinelli, owner of Juliana’s Academy of Dance, said, “The audience went crazy over him.”

“It’s hard to get up in front of an audience. I used to throw up before I would perform. But he walks up on that stage like it’s nothing,” she said.

Dupuis’ mother Colleen said all the instructors and students at the dance studio “see him for his abilities, not his disabilities.”

“The young people here treat him like everybody else. There’s no difference, and he dances just like they do,” she said.
Dupuis has been a student at Juliana’s Academy of Dance for five years. He has performed a solo during every dance recital since he started, and he said he plans on dancing for at least six more years. Every year, he picks his own song. His first year, he dressed up like Michael Jackson and danced to “Thriller.”

His mother said Dupuis loves all kinds of music — from pop to country. He wanted to dance to “Sexy and I Know It” by LMFAO this year instead of “Party Rock,” but she said no.

“He can shake those hips a little too well,” she said, with a laugh. “He can make Shakira jealous.”

Dupuis has been a co-teacher for the 7- to 11-year-old hip-hop class, “The Junior Big Bang Attack,” with Corey Whitfield, 27, every Thursday night for the past year.

Whitfield said Dupuis helped choreograph the students’ competitive dance, which won first place in the group hip-hop division and third place in overall hip-hop.

“(Dupuis) is three years younger than me, but he dances better than me. I'm jealous,” Whitfield said. “This kid can dance circles around me, and I’ve been dancing for 22 years.”

Whitfield said he remembers when he first saw Dupuis dance three years ago. This was before he began teaching at the academy, but he already heard about Dupuis’ talent from others within the community.

“One of my students I trained at a gymnastic facility brought me to a recital. (The student) told me that Ryan was going to do a solo. Immediately, my mouth dropped to the floor. Not only that, but seeing him perform with a group of kids, as well, the way he kept up with the choreography more than some of the kids who have been dancing a longer time, it really puts dancing in perspective. This kid puts one hundred million percent in. He is amazing,” he said.

Colleen Dupuis said her son has had 22 surgeries in his life, recently had two major knee surgeries, was born with a heart defect and has a cyst on his hipbone. He also was diagnosed with Graves Disease, an autoimmune disorder that leads to overactivity of the thyroid glad. Yet Dupuis still keeps going.

“He’s overcome a lot of medical obstacles. You cannot keep him down. Sometimes he feels sore afterwards, but he doesn’t care,” she said. Pirpinelli, the dance academy owner, said, “I think it’s good for the kids in the class to learn that everybody has worth and everybody can offer something. Ryan has a lot of worth.”

Church lifts ban on Catholic boy, 8, taking Holy Communion because he has Down's Syndrome

from The Daily Mail by Chris Brooke:

When Denum Ellarby walked down the aisle with his classmates to take Holy Communion for the first time his parents felt a mixture of pride and relief.

For the family have had to battle what they regarded as ‘cruel discrimination’ by the Catholic Church to ensure their eight-year-old son with Down’s Syndrome could take part in the important First Communion ceremony.

Until the Daily Mail highlighted his plight in January the local priest, backed by the diocese, was refusing to allow him to take part as he would not understand the preparation classes or ‘enjoy participation in Mass.’

His mother Clare Ellarby believed his disability was responsible for the church’s refusal to accept him and collected a 400 signature petition in support of Denum from the local community.

But in the wake of the bad publicity the church had a change of heart.

At a meeting with the parish priest Father Patrick Mungovin and the boy’s headteacher at his Roman Catholic primary school, special arrangements were agreed for Denum to be prepared for First Communion.

Mrs Ellarby had not been going to Mass with Denum because she thought the hour-long service was too much for him, but she started taking him to church each Sunday to persuade the priest to accept him.

Although he was not allowed to join his classmates in their monthly preparation sessions, he was given his own private weekly religious tuition by a member of the church support staff.

Despite all this Denum’s parents remained unsure of what would happen until a week ago when the priest told them he would be allowed to join his school friends in the communion ceremony.

‘I am very happy they have allowed him to take communion after all, but they have made him do more than most other people,’ said Mrs Ellarby, 31.

‘I think they shouldn’t have done what they did in the first place and if it wasn’t for the Daily Mail and the media interest he would not have been taking part at all. 'The church, quite rightly, came in for a lot of criticism. I think they have got a way to go before properly accepting children like Denum and other people with disabilities.’

Mrs Ellarby said four generations of her family had worshipped at St Mary of the Angels Church in Batley, West Yorkshire, where Denum was baptised and where she had taken her First Communion as a child.

She and her husband Darren, 37, a property developer, said she expected her local church would be ‘flexible’ in their approach to Denum being prepared for the ceremony and were shocked at the parish priest’s stance.

‘I am really glad that Father Patrick changed his mind and has made this possible,’ she said.

After previously making his first confession, Denum did what was required on Saturday when he took his First Communion in front of dozens of friends and relatives.

‘It was a lovely service and I am so glad we fought for Denum to be treated like anyone else,’ said Mrs Ellarby.

Unfortunately the church has still not completely learnt from the experience. Three weeks ago church officials held a First Communion party for the classmates who had been prepared together, but Denum did not receive an invitation.

The church always denied ‘banning’ Denum. A spokesman for the diocese refused to comment on Denum’s situation, but said the church wanted ‘to thank all those people both young and old who have shown the courage to come forward, take part in the preparations and so take this step in Faith.’

Read more:

Friday, May 18, 2012

Select NDSC Convention Workshops Streamed Live

from the NDSC:
For the first time ever, selected workshops will be streamed live for families and professionals who are unable to make the trip to Washington, DC. While we expect this year's convention to be one of our best attended ever, we are excited about the possibilities related to extending our reach even more! For a minimal fee, NDSC members will be able to take a peek into the largest gathering of its kind anywhere in the world. Stay tuned for details about the workshops chosen for streaming, and all of the details related to accessing the content on your computer.

Coventry ends deal to cover Sequenom's Down Syndrome test

from Reuters:

Genetic analysis products maker Sequenom Inc said insurer Coventry Health Care Inc terminated an agreement to provide coverage for its prenatal test to detect certain chromosomal abnormalities including Down Syndrome.

Coventry had agreed to provide coverage to its 2.2 million members for Sequenom's MaterniT21 PLUS testing service, which needs only the mother's blood to detect chromosomal abnormality, from July 1.
Sequenom said on Thursday that Coventry terminated the agreement without citing any cause, effective August 31.

Sequenom shares fell 12 percent to $4.22 in after-market trade. They closed at $4.77 on Thursday on the Nasdaq.

Thursday, May 17, 2012

How a cheerleader with Down's Syndrome became homecoming queen and touched a community

from The Daily Mail:
It can be a difficult time for many teens.
But high school for Barbara Behlmann has been exhilarating. 
The 19-year-old has inspired her classmates at Hazelwood West High in St Louis - not because she was crowned homecoming queen or is a star cheerleader - but because she has Down's Syndrome.

One of her teachers, Jodi Schutzenhofer, explained to 'Unknowingly, Barbara has taught us all that nothing is impossible if you are willing to work for what you want.'As the website reports, Barbara was four-years-old when child welfare workers placed her in the foster home of Gary and Karen Behlmann - malnourished at 22lbs.

Her birth parents had neglected and abandoned her; by then, she had already lived in 17 other homes and had extreme difficulties communicating.Doctors described her as having 'failure to thrive.'

But the Behlmanns, STL Today reports, said slowly with nurturing and intense speech and language therapy, she began to flourish. Today, she is considered one of the most outgoing students at Hazelwood - and one of the most popular. 

Read more:

Wednesday, May 16, 2012

Terminally Ill Man Receives Random Acts of Kindness

from Mashable by Christine Erickson:
Scott Widak and his family recently received the greatest gift anyone in their situation could receive — a viral act of encouragement and kindness from complete strangers.
Widak, 47, has Down syndrome and is terminally ill with liver disease. After frequently checking in and out of the hospital, Widak is now at home with his 85-year-old mother, who’s helping with his in-home hospice care.
To cope with such a challenging situation, Widak’s nephew, Sean O’Connor, turned to the Reddit community to see if anyone would be interested in sending a letter to his uncle.
“One of my uncle’s favorite things to do is open mail, and I thought that if he got a lot of mail it would cheer him up,” says O’Connor.
Within three hours, the post received more than 1,300 comments, most of which expressed interest in sending mail. O’Connor then included a link to a news article about Widak and his art, along with two photos of him and his mother, a P.O. box address and a few things he’s interested in, like Johnny Cash.
Due to the amount of personal information, Reddit removed the post four hours later — which was apparently enough time for most of the commenters to copy the address.
Following the post, Widak received hundreds of letters from all over the world, including the United States, Sweden, Finland, Australia, Japan, the United Kingdom and Mexico. According to O’Connor, there is still mail coming in.
In addition to beautifully written letters, Reddit users have sent custom artwork, art supplies, DVDs and personal keepsakes that they wanted to pass on to Widak.
Sony Music Entertainment sent him 15 CDs/DVDs, which were mostly by Johnny Cash.
“The mail that’s arrived has all been extremely positive and thoughtful,” says O’Connor. “My family and I are amazed at how so many strangers could come together for a random act of kindness.”
O’Connor and his family have shared these images of Widak and the overwhelming amount of mail he’s received. Take a look and share your thoughts in the comments.

Tuesday, May 15, 2012

mother refuses to be bowed by myriad hardships

from the Richmond Times-Dispatch by Bill Lohmann:
This is not exactly the way Kim Moncrief figured motherhood would go, but that's OK by her.
"It's been an adventure," Moncrief said one recent afternoon, sitting at her dining room table. "That's for sure."
Here's a recap of the last half-dozen years: Her son Logan was born in 2006 with Down syndrome and a heart defect that required two surgeries by the time he was 3 months old; her twins born in 2009 needed physical therapy when they were slow to crawl and walk; and she has battled breast cancer. Twice.
In the middle of everything, her husband, Johnny, was laid off from the staffing agency where he worked as a manager, and they started several businesses to stay afloat.
"We waited all this time, bought a house, had everything set up," Moncrief said. "You just never know what's going to happen in your life.
"It's never been normal since the day we started this. Now, we look at it and just laugh because first of all, it's silly to think about what 'normal' is. 'Normal' is just whatever you become."
Moncrief marvels at the unexpected paths she has taken because of her circumstances. Friends marvel at the way she has traveled those paths.
"When I look at Kim, I see the most remarkable person I have ever met," said Anne White. "Whenever I start to think things are tough, all I have to do is think about all Kim has endured and how graceful she has been through it all, and I realize things really aren't that bad.
"It's about how we deal with the challenges we are given in life, and she is truly an inspiration in how she has dealt with everything."
White's daughter, Lindsay, who just turned 20 and who has Down syndrome, dances with Miracles in Motion, a dance troupe for children with special needs that Moncrief founded after Logan was born. While she was managing her children's special needs and undergoing treatment for breast cancer, Moncrief, a longtime dance instructor, was encouraging and inspiring other people's children through tap and ballet.
"Even through her bouts with cancer, she made sure our kids' dance routines kept going with little disruption for them," White said. "She was battling cancer, yet wanted to make sure the dancers were OK. How selfless is that?"
Lyn Dodge, whose 8-year-old daughter Emily has Down syndrome and dances with Miracles in Motion, said, "Kim is an incredible woman with a huge heart for everyone. She certainly gives way more than she receives."

* * * * *
Moncrief, 42, knew her life had changed when tests during her first pregnancy showed the child was likely to be born with Down syndrome — and that was if he survived at all. In utero, the child's heart wasn't formed properly, one lung wasn't doing anything and the other was filled with fluid, as was the brain.
"Once we got over the initial shock of it, then we just sort of went through it," Moncrief said during an interview at her home in western Henrico County. "We just decided we're just going to keep going. If he makes it, he was meant to be here, and if he doesn't make it, then we're meant to do something with that.
"There's a purpose for everything."
Just before Logan was born, the chamber in his heart developed, his lung began working properly and the fluid cleared from his brain.
"It was really crazy," she said. "They said it was a miracle."
Another moment of magic had occurred weeks earlier when Moncrief faced one of her competitive dance classes and told them what was going on with her pregnancy. She told them if the baby survived he would have Down syndrome, "but we want him here." The reaction was largely somber except for one student who blurted excitedly, "That is awesome!"
The student, Ashley Gregory, came up with the idea for a dance troupe for children with special needs. She reminded Moncrief for months what a cool idea it would be until Miracles in Motion came to be under the auspices of Ann Catherine Cross School of Dance, where Moncrief teaches and where Gregory still helps her.
"She's my other inspiration," Moncrief said.
Logan is the other one. Before Moncrief could start Miracles in Motion — in which she would provide instruction and costumes to children with a wide range of disabilities and have them perform, just like the children without any special needs, so the community could see them, too — she needed to get her son well.
He spent much of his first year in hospitals. Once he was on the mend, she launched Miracles in Motion.
Then she was diagnosed with breast cancer.
She underwent a lumpectomy and radiation treatments, and everything looked good. So she and Johnny decided to try to have another child — and they ended up with twins.
The twins, Isabella and Gibson, were 4 months old when Moncrief discovered she had breast cancer again. A month later, Johnny lost his job, and the couple scrambled to bring in income, starting an ice-cream shop, a commercial cleaning firm and a T-shirt business ( that aims to raise awareness about Down syndrome.
"It was wild there for a while," Johnny Moncrief said. "We really feel like God put us in situations that we've overcome and been able to inspire others. It's almost like we've been able to do more through it than we would have ever been able to do otherwise.
"You can't sit around saying, 'What if?' all the time. This is the way it is, and you have to live with it. It just becomes your life."
Kim underwent a mastectomy and additional surgeries. Family and friends stepped forward and helped with meals and support, and the Moncriefs made it through.
"It was a crazy blur of things," Kim said. "I don't know how it all worked out, but it did.
"Everything is good now."
The twins, now 2½, are running around, and Logan, who turns 6 in June, is thriving — still undergoing therapy, but playing basketball and soccer and loving going on stage to perform with Miracles in Motion. Johnny is working as an insurance agent, as well as managing businesses the couple started in recent years. Kim's health is fine, and she's back to teaching dance, including Miracles in Motion.
"It's just unbelievable how nothing can seem to get her down," said daughter-in-law Amber White, who is married to Moncrief's stepson, Jeffrey, from her first marriage. "She remains positive throughout everything. She will never be defeated."
Moncrief said the challenges of the past few years have made her wiser and more confident, taught her to take what you're given, learn what you can and press on, and "it will work itself out."
"I've always been open to whatever comes," she said. "I've always been the kind of person that rides the wave, just kind of jump in and go, 'Wooo!'
"I always knew there was something important I was supposed to do, but I wasn't there yet. Then I had Logan and the dance troupe. Everything has come together the past five years, and I know where I'm supposed to be."

Daunting problems, undaunted parents

from the Philadelphia Inquirer by Tom Avril:

Reduced to bare numbers, the story of Katie seems impossible.
Age: 9 1/2 years.
Height: 29 inches.
Weight: Less than 11 pounds.
Yet that is how she was, lying in a crib in a Bulgarian orphanage, when Susanna Musser showed up to become her mom.
The little girl was alive, more or less. Her legs looked thin as broomsticks. Her skin was colorless, her brown eyes empty. She looked as if she might break.
Thousands of miles away, physicians at Children's Hospital of Philadelphia reviewed her records and struggled to understand. Katie had Down syndrome, but that would not explain why, at the age most children enter fourth grade, she weighed little more than a baby.
The doctors eventually agreed with Susanna and her husband, Joe, that this was a case of horrific neglect - that Katie, along with more than a dozen other disabled children at the orphanage, was simply a victim of long-term starvation.
What Katie needed, in careful doses, was healthy food. Once she left the orphanage for her trip back to Pennsylvania, however, the hollow-faced child had other ideas.
Finally in the arms of parents who had waited months to hold her fragile body, Katie suddenly refused to eat.

A blessing

It began, as so much else does these days, with the Internet.
Joe and Susanna Musser had a large, happy bunch of kids in their cozy, gray-shingled house, at the end of a gravel driveway in Lancaster County. Joe, a former pastor, earned a living as a carpenter, while Susanna taught their nine children at home.
Then came Verity. The Mussers' 10th child, whose name means truth, was born with Down syndrome. Though they knew almost nothing about children with disabilities, they saw her as a blessing from God.
So when Susanna started a blog, she named it "The Blessing of Verity," and it quickly drew an avid group of followers.
One of them e-mailed Susanna to ask about adopting children with Down syndrome, so Susanna did some research. She came across a Today show video from 2007, with wrenching images of emaciated children, confined to cribs in a Serbian mental institution. Some, like Verity, had Down syndrome.
Devout Christians, Susanna and Joe couldn't imagine that someone like their daughter would be discarded that way.
They looked at each other and realized that they, too, wanted to adopt.

Read the full story here.

Monday, May 14, 2012

Leading with her heart

A day after the birth of her first child, Coleen Popp was handed a book on Down syndrome.
The specialist explained to her and her husband, Christopher Popp, that the best thing they could do now was to bond with their son Brendan.
“Before the day was over, that book was done,” she says. “I’d met a few people with Down syndrome, but I didn’t know what it was. I didn’t know what that meant. I didn’t know what that meant for Brendan. I needed to know.”
Her husband went on the Internet and found all sorts of resources.
“That started our journey,” she says.
It was the family’s introduction to the genetic condition in which a person has 47 chromosomes instead of the usual 46. While symptoms vary and can range from mild to severe, Popp was determined that her son – and all others with special needs – should be accepted and treated like any other member of the community.
Becoming a mother to Brendan, her oldest son, also launched Popp on a quest to let people know of options available for children with special needs. Through her work with various organizations, including the Delaware Foundation Reaching Citizens with Intellectual Disabilities, where she was recently named a board trustee overseeing education awareness programs, Popp aims to let others know about available options, as well as letting people better know the special-needs community.
“Having a kid with a disability is very overwhelming, yes I will agree to that,” says Popp, now 38 and the mother of three in Middletown. “But it doesn’t have to be either – there are resources available. If you have any doubts in your mind, erase them.
“For every time the doctor says ‘He’s not going to do this’ or ‘He can’t do that’ or ‘He’s going to have a hard time with this,’ erase that and let your son or daughter set their own boundaries and set your own goals and make sure you obtain them. Make sure they’re attainable because that’s what helped us.”
Her enthusiasm to educate others is an inspiration to many involved in special-need programs, says Anthony T. Glenn, the foundation’s executive director.
Read the full article here.

Thursday, May 10, 2012

Fantastic Speakers lined up for the CDSS Conference 5/18-5/20

The 2012 Canadian Down Syndrome Conference is May 18-20 in Toronto.

Remember to register for the conference if you haven't yet - spots are filling up fast. We hope to see you there!

  • You can also download the 2012 Conference Preview brochure. Included in the brochure is more information about the conference, including a short list of sessions!
  • Download it here: 2.3 MB (PDF file)
  • If you have any questions or concerns please email

Keynote and Endnote Speakers

Our Keynote Speaker: Marlee Matlin
Academy Award winning actress, author, mother, and advocate.
MarleeMarlee Matlin received worldwide critical acclaim for her motion picture debut in Paramount Pictures’ Children of a Lesser God, earning her the Academy Award for Best Actress. At age 21, she became the youngest recipient of the Best Actress Oscar, making her one of only four actresses to receive that honour for a film debut. In addition to the Oscar, Matlin was honoured by the Hollywood Foreign Press Association with the Golden Globe Award for Best Actress in a Drama.

Passionate about children, she has also appeared in a number of educational and children’s programs. She can currently be seen starring in Disney’s highly acclaimed Baby Einstein DVD series, teaching sign language to infants and toddlers.

Matlin currently serves as a National Celebrity Spokesperson for the American Red Cross, encouraging Americans to donate blood. She has worked on behalf of closed captioning and was instrumental in getting Congress to pass federal legislation requiring all televisions manufactured in the United States be equipped with closed captioning technology. She also serves on the boards of a number of charitable organizations including Easter Seals, The Children Affected by Aids Foundation, as well as those charities which primarily benefit children. In 1995, Matlin served as Chairperson for National Volunteer Week and was honored in a White House Rose Garden ceremony by President Clinton. In 2006 Matlin was honored by AOL as “Chief Everything Officer,” highlighting the important contributions of mothers, both home and work environments.

Our Endnote Speaker: Dr. Dave Williams
Astronaut, medical doctor, and parent advocate.

Dr. Dafydd (Dave) Rhys WilliamsWith a passion for healthcare and risk management, prior to entering the Canadian Space Agency's program, Dr. Dave Williams worked as an emergency room doctor and later as director of emergency services at Sunnybrook Health Sciences Centre in Toronto. Formerly the director for the McMaster Centre for Medical Robotics, where he led a team dedicated to developing innovative technologies to assist the development of local and remote patient care. July 2011 marked a new journey for Williams as he became President and Chief Executive Officer of Southlake Regional Health Centre.

Dave Williams joined an exclusive club when he blasted into space aboard the Space Shuttle Columbia, and again on Shuttle Endeavour where he walked out into the great beyond. Having also lived and worked in the world's only underwater ocean laboratory, he became Canada's first dual astronaut and aquanaut.

A true Canadian hero, Williams is down-to-earth with a compelling and unique approach to peak performance, environmental stewardship, our futures and risk management.

2012 Speakers and Sessions

Sessions in Red are Self-Advocate Friendly
Sessions in Blue are Self-Advocate Only
  1. Sara Bingham: Enhancing Language and Lessening Frustration
  2. Emily Bolyea-Kyere: An Introduction to the Best Buddies Friendship Program
  3. Patrice César: Film Presentation: Trisomie 21 Défi Pérou (translated title: Up with Downs: The Peruvian Challenge)
  4. Dr. Brian Chicoine: Promoting Health for Adolescents and Adults with Down Syndrome
  5. Jim Cochrane: Step by Step- A Lifetime of Transitions 
  6. Joe Dale and Mark Wafer: Employment Options for Adults Who Have a Disability
  7. Maria Dellapina, Specs 4 Us: Children's Vision Awareness for Parents and Guardians
  8. Sujeet Desai: My Story: Improvising Disability with Multiple Intelligence
  9. Dr. Koch: Whats Next: Politically, Practically, and Socially (Bioethics of Prenatal Screening)
  10. Laura LaChance: Dental Care and Down Syndrome
  11. Barbara Laird: Before Behavior Begin
  12. Arleigh Luckett and Kristy Simons: Potty Time- A Whole Body Approach to Toilet Learning
  13. Marlee Matlin: Self-Advocate Meet & Greet 
  14. Dr. Dennis McGuire: Promoting Strengths and Creative Potential in Persons with Down Syndrome
  15. Mercer Family: Leaving Home
  16. Karen Meredith Blott: Getting What You Want: Why You Need to Consider Personality
  17. Lorraine Paquin, Jullian Paquin, and Nicole Paquin: Advocacy and Action
  18. Dr. Gordon L. Porter, CM: Making the Case for Inclusion: Strategies for Parent Activists
  19. Dr. Mary Pothos: Medical Issues in Children with Down Syndrome: Everything You Ever Wanted to Know and More
  20. Erin Sheldon: Using Technology for Inclusion
  21. Sarah Strathy and Maryanne Bruni, Silver Creek Preschool: Total Communication Approach in an Integrated Pre-school
  22. Catherine St. Cyr: The Benefits of the Montessori Experience for Children with Down Syndrome
  23. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Boys and Men with Down Syndrome
  24. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Girls and Women with Down Syndrome
  25. Surrey Place Centre: What You Need to Know… All About Your Health 
  26. Voices At The Table Advocacy (VATTA) Committee: Down Syndrome: The Evolution

Wednesday, May 9, 2012

Michigan High Schooler With Down Syndrome Might Get to Play Basketball Despite Age Issue

from Forbes by Bob Cook:
When the Ispheming Hematites 2012-13 boys basketball season tips off, a familiar figure might be at the end of the bench: 5-foot-1, 130-pound Eric Dompierre. Until today, May 7, it looked like there was zero chance that would happen, because the Michigan State High School Athletic Association wasn’t going to waive its rule that students who are 19 by Sept. 1 can’t play sports at member schools. This, despite Dompierre being 19 as a high school senior only because he started elementary school at a later age, a result of his Down syndrome.

However, the MHSAA issued a news release, following a spring meeting in the northern Michigan vacation hamlet of Gaylord, that opened up the possibility Dompierre will be allow to play.
Actually, the release made it abundantly clear that while the MHSAA is getting a lot of heat for not allowing Dompierre to play, it’s the member schools who have effectively prevented that from happening, and it’s the member schools who will decide whether that will happen. It also made it clear that it believed Ispheming High (located in Michigan’s Upper Peninsula) hadn’t followed the correct process to get a waiver in the first place. Dompierre isn’t mentioned by name.
Basically, the release reads like something an organization defensive about its image would put out after being publicly pressured to do something it wasn’t planning to do. (I would have the MHSAA respond to that statement, but the release concludes by saying, in bold type, that the organization won’t offer any further comment.)
From the release:

The Representative Council of the Michigan High School Athletic Association, at its Spring meeting which concluded here today, approved a proposal for a vote by member schools which would change the organization’s Constitution to allow for a waiver of its maximum age limitation under narrowly defined circumstances.
Ballots will be mailed this week.  Schools have two weeks to return the ballots, which must be signed by the school principal and superintendent.  The MHSAA will post the wording of the proposal on its website not later than May 14.

Currently under MHSAA rules, a student who turns 19 prior to Sept. 1 of a school year is not eligible for interscholastic athletics.  Michigan is one of approximately 40 states which use this maximum or have a younger maximum age limit. The MHSAA’s Constitution, which can only be changed by a two-thirds vote of member schools, does not allow the maximum age rule to be waived.   Michigan is in the majority of states which do not allow waiver of the rule.
“We recognize that member schools have preferred a bright line for the maximum age rule,” said MHSAA Executive Director John E. “Jack” Roberts.  “We have prepared for a vote of the membership what we believe is the best alternative – better for Michigan than any proposal we have reviewed from other sources.
“The Representative Council does not advance proposals it does not want the membership to support, and an affirmative vote by schools is being specifically requested on this proposal.”
Based on member school input, the Council previously rejected proposals from the same member school district for a constitutional vote in 2010 and 2011.  The school district did not exercise its option to launch its own petition drive of member schools; nor did it avail itself of an athletic eligibility advancement provision in the MHSAA Handbook which allows for over aged students to have four years of high school participation with their age group.
To be fair, the MHSAA is a member organization, and if the member schools don’t want to offer a waiver, the MHSAA’s hands are tied. (That was the point of the previous conversation I had with the organization when I first wrote about the Dompierre situation.)
So the MHSAA’s release couldn’t be plainer. The MHSAA is saying, if Eric Dompierre is not allowed to play, don’t blame us. Blame the high schools in Michigan for deciding the rulebook is more important than one student and one school that isn’t seeking a competitive advantage, that just wants to revel in the joy of an inspirational figure who generally comes in when the outcome of a game is no longer in doubt.

Passion for fashion drives self-taught Port St. Lucie artist with Down syndrome

from the Palm Beach Post by Julius Whigham II:
When Katie Henderson developed an interest in drawing and sketching a few years ago, it didn't take long for her to get noticed.
Her designs earned her an artist of the month award at the Ability Resource Center in Fort Pierce four years ago.
Today, Henderson, who was born with Down syndrome, is an entrepreneur who recently started her own business and had her drawings featured at a Stuart art gallery.
Henderson, 29, said that she likes to draw fashion models.
"I like fashion, I like looking at fashion magazines," she said. "I have fashion shows on DVD."
Henderson grew up in Virginia, but moved to Port St. Lucie with her family in 2005. She began drawing a few years ago, using inspirations from fashion and paper doll sketchbooks, her mother, Ruth Henderson, said. She taught herself to draw, with her images often focusing on abstract shapes.
With some help from her family, Katie started her own business last year - Miss Katie's Kreations. The online store ( features golf T-shirts with designs by Katie and note cards with her fashion drawings.
"She told her dad that he needed to be an entrepreneur and (invest in her business)," Ruth Henderson said. "She has a golf line and a fashion line."
Katie's artwork was selected to be part of an exhibit last month at the Osceola32 gallery in Stuart. The exhibit was entitled "The Magical Journey of Empowered Women."
Later this month, Katie will be a guest at a Research Down Syndrome Foundation event at the University of Notre Dame in South Bend, Ind. She has contributed an original drawing and a print to the event. She also will have an exhibit at the National Down Syndrome Congress in July in Washington, D.C.
"I think she's become an inspiration to families that have children with Down syndrome (and) adults with Down syndrome," her mom said.

What are your hobbies?
She likes to draw and watch movies.
What is your favorite TV show?
She said that the television series Charmed is one of her favorites.
Who are your favorite musical artists?
'I like Britney Spears. She has a new (album) I like Hillary Duff.'
Who is your favorite artist?
'I try to do my own (style).'
What's your favorite meal?
'I like pizza.'
Who would you like to meet?
She would like to meet Britney Spears.

Tuesday, May 8, 2012

Kent State Student Excels Despite Down Syndrome

from Kent Patch by Kelsey Misbrener:

Megan Rothermel has never let the word “no” stop her from achieving academic success and independence. And she hears the word a lot.
No, she can’t learn Spanish because she has Down syndrome.
No, she can’t be independent because she has diabetes.
But to all the doubters, the short, pony-tailed 23-year-old says, “Watch me.”

Academic ups and downs
The first trial came in kindergarten when Megan’s mother, DeeOnda, tried to enroll her in the Garrettsville school system. The system’s policy said no students with multiple disabilities could attend. They were instead sent to Ravenna schools, which were better equipped for disabled students.
But Ravenna was far away. DeeOnda wanted Megan to go to school with her neighbors so she could make friends close to home. After DeeOnda debated with the Garrettsville school staff, they finally agreed to accept Megan.
She became the first multiple-disability student at the school, and she still talks to her best friend she met in kindergarten.
“Every time we started school, every year, the teachers would be real hesitant about having her in their classroom,” DeeOnda said.
The teachers thought Megan would require a lot of extra work on their part. DeeOnda said it was mainly the Down syndrome that worried them. “And probably ‘cause of my health issue too,” Megan, who’d been silent, adds softly.
Before 1975, students with multiple disabilities were rarely sent to school at all. Many were housed in mental institutions until the Education of the Handicapped Act forced public schools to create special intervention and education programs for the disabled, according to the U.S. Department of Education.
Though teachers had their doubts about Megan, she said she exceeded their expectations.
“The only downfall I had is math. But science, history, language … I excelled in. I got A’s,“ Megan said triumphantly.
In high school, Megan took regular education classes — except for one special education class in English.
Because she didn’t take regular English she couldn’t take a class she was interested in: spanish. School policy dicatated students had to pass the regular English class to take a foreign language.
“So mom said that was okay, and we went and got (Spanish) CD’s, and I taught myself Spanish,” Megan said matter-of-factly.
Along with the tapes, she got some help from the Spanish teacher, Anna Stamolis. Anna said she met Megan after substituting in the special education room.

“She’d always say, ‘I wanna learn to speak Spanish,’” Anna said. So Anna gave Megan a Spanish book to study on her own. She soon found out Megan had a great memory and could learn Spanish words and sentences with ease.

“And I would see the Spanish teacher in the hallway and I would speak to her in Spanish, and then the teacher really liked me; liked how I spoke to her, and invited me to be in her class,” Megan said, grinning.
School administrators made an exception to their rule and let Megan take Spanish.
“I would put the kids to shame because she’d get a 95 or 96 percent on her tests and kids in regular (education) couldn’t do that,” Anna said.

People with Down syndrome have proven quite adept at understanding information, but they often struggle to express the knowledge they’ve retained, according to the National Down Syndrome Society. They have trouble processing information and then focusing attention on one task. Megan’s been taking classes and improving her Spanish for five years.
“I can say, “Hola, muy bien, y tu?” Megan brags, rolling her R’s. She’s also taken two semesters of American Sign Language through Kent State University’s Career and Community Services program for the intellectually disabled. Those classes prepared her for an unexpected opportunity. She got to sign the national anthem at last December’s Special Olympics.
“I stood in front of everybody,” Megan proudly announced.
And she plans on taking Greek next semester.

Breaking away
Megan is 23, but her unpredictable diabetes makes her rely on her mother to help her when her blood sugar is high or low.
She contracted Type 1 Diabetes when she had chicken pox in kindergarten. Her antibodies tried to kill the virus, but instead they unintentionally killed part of her pancreas. The organ stopped producing insulin, and she had to start injecting herself with insulin to regulate her blood sugar.
She must figure out exactly how many carbs she’ll ingest before every meal of the day. For every 15 carbs, she must inject two units of insulin. Megan’s math skills are lacking, so she has to call her mother every time she eats to calculate how much insulin to take.
Even if she painstakingly keeps track of her diet, her blood sugar sometimes still drops or rises for apparently no reason at all. In the past, her mother or high school aids were always around to help her. Now that she’s taking college courses and spending more time on her own she must watch it herself. Not all by herself, though; her best friend Kelsy Hodgkinson is usually there to throw her a sugary treat or tell her to take an insulin shot to bring her back to normal.
Kelsy said Megan starts to yawn and get grumpy when her sugar start to plummet. Kelsy then makes sure Megan eats sugary food to raise it back to normal. If Megan’s sugar is extremely low, Kelsy calls DeeOnda to come and take Megan to the emergency room. Sometimes Kelsy has to call DeeOnda during class.
Once, Kelsy noticed Megan was becoming irritable. She saw Megan reaching for her tube of mini M&M’s, but she knew her fine motor skills weren’t the best because of Down syndrome. Kelsey jumped up, grabbed the tube, ripped the plastic case off, and handed Megan some chocolates.

On her own
Megan’s also ready for another kind of independence.
“She’s got a boyfriend now,” DeeOnda slyly admits.
“Thanks, mom” Megan replied sarcastically — with a hint of excitement.
Megan met her 6-foot tall, brown-haired boyfriend Brad Bohrer in Kent State’s CCS program.
“He came up to me and said, ‘I’m gonna marry Megan,’” DeeOnda said. “I said, ‘You are? Does she know this?’ He said, ‘No,’ and I said, ‘Well Brad, don’t you think you ‘oughta tell her?’”
So Brad told her, and they started dating. Megan brings Brad into the conversation whenever she can, whether it’s mooning over the flowers and stuffed animals he’s given her or giggling about his Michael Jackson-esque dance moves.
“They’re talkin’ about getting married. But it’s not gonna happen ‘til they’re out of school,” DeeOnda said.
“Thanks mom,” Megan grumbled.
So far, they’ve been to the mall, movies and dinner. Though their parents must drive them to dates because neither of them have a driver’s license, Megan’s still hopeful the two of them can live by themselves one day. Even if that means living one driveway from her family’s home. The Rothermels own a guest home in their cul-de-sac, which they’ll give to Megan once she’s ready to move out.
Still, Megan won’t be able to enjoy a traditional family life. Her depleted pancreas can’t support a pregnancy.
“He wants to have five kids, but I’m a diabetic and I can’t put my body through it,” Megan said.
Brad told her he would much rather sacrifice having a baby rather than put Megan’s life in jeopardy.
“So, we switched from five kids to five dogs,” Megan said with a grin.
“I’m okay with the dogs,” DeeOnda chuckled.

Friday, May 4, 2012

actor with Down syndrome tackles Hamlet

from This is Cornwall:

A theatre company is to stage Shakespeare's Hamlet at the Minack Theatre with a Down's Syndrome actor taking the title role for the very first time.

Tommy Jessop, pictured, whose work includes a lead role in the BAFTA-nominated Coming Down The Mountain on BBC television, is touring with Blue Apple Theatre, one of the leading disability arts companies in the south which creates opportunities for actors with learning disabilities to perform in mainstream productions.

The play is being staged at Porthcurno's Minack on Saturday, May 12, at 7.30pm and will continue its tour across 12 UK locations.

Jane Jessop, founding director of Blue Apple Theatre in Winchester, said Hamlet was chosen as "the ultimate Shakespeare play" that would challenge both the cast and audience.

"All that actors with learning disabilities can mostly get is a supporting role so to put someone like Tommy with Down's Syndrome on stage as Hamlet, one of the highest profile roles in the whole of world literature, is extremely exciting.

"Watching it is like seeing a miracle, knowing what the prognosis is for people when they're born with Down's Syndrome and how so little is expected of them," she added.

"Shakespeare speaks to us all. I believe this will be extremely thought-provoking, powerful and utterly moving and we will all, cast and audiences, gain something wonderful from this production," said Jane.

The actors at Blue Apple Theatre have a range of disabilities, such as autism, including Asperger Syndrome, Down's Syndrome and behavioural difficulties. The discipline, challenge and excitement of learning lines, rehearsing and putting on a play helps them to develop new skills and increase their self-esteem, confidence and independence.

Blue Apple's Hamlet has been adapted by scriptwriter and film-maker William Jessop, 29, who has shortened the 210-minute play to just 70 minutes, without losing the key elements of the drama.

He said: "I've kept Shakespeare's original language, so the key challenge has been to work closely with each actor to make sure they understand and own everything they're saying and make each part their own."

Tommy, 27, who has featured in Casualty, Holby City and in afternoon plays on BBC Radio 4, said that Hamlet was his most difficult role to date.

"Learning the lines has been challenging, as Hamlet's in almost every other scene, and there's a range of emotions to put across. There's a bit of sadness, a bit of happiness and a bit of anger," he added.

To book tickets, phone the Minack on 01736 810181 or visit

Thursday, May 3, 2012

Girl's Dream Comes True At Local Prom

from KVIA ABC-7 by Jennifer Myers:

Carolann Nunez is a Special Olympics gold medalist. She has also won second place in a national Glamor Shots contest. But the one thing Nunez really wanted to accomplish was being crowned prom queen at Americas High School.

Girl's Dream Comes True At Local Prom - News Story - KVIA El Paso

Her friends and family came together to make last Saturday's prom a truly memorable moment for Nunez. They made posters, tweeted to encourage voters and even spread the word on Facebook to help boost her numbers.

"Carolann has dreamed of being prom queen for years and years. She's watched Disney movies with prom queens getting crowned. For years and years she's always wanted to be prom queen," said her father, Michael Nunez.

Carolann Nunez has Down Syndrome. But that hasn't stopped her from achieving what many high school girls see as the epitome of high school accolades, something she says she couldn't have done without her friends and family. "So proud of them. My parents helped me make a dream come true," said Nunez.

ABC-7 spoke with a few Americas students, many of whom said they were touched by Nunez's kind heart and warm spirit. "She's the happiest person in the world. She's so energetic and full of life. She's the sweetest person on earth," said Americas senior Gabrielle Roper. "Every day when I see her, she's always really happy. She says hi to everybody. She's really friendly," said prom king Brian Contreras.

Nunez picked out a pink sparkly dress for the big occasion, and her father went as her date.

After she was crowned, the screams and cheers that followed after she was crowned showed just how much her fellow students cared.

After the prom king and queen dance, she ran up to one of her biggest supporters.

"She said, 'Daddy, I did it!' and gave me a great big hug," said her father.

ABC-7 asked her father what he would say if he could speak to all of the students that voted for Nunez. "Thank you to the student body. Their caring and acceptance of Carolann has just been fantastic. All the thanks in the world goes out to them for making her dream come true."

Jon Will's gift

from the Washington Post by George F. Will:

When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable. The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect — an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.

Two things that have enhanced Jon’s life are the Washington subway system, which opened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.

Except he is, in a way. He has the gift of serenity, in this sense:
The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

This year Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.

Tuesday, May 1, 2012

Cathy McMorris Rodgers open to being Romney's VP

from USA Today by Catalina Camia:

The only woman in the House Republican leadership team reportedly is open to being Mitt Romney's running mate and would like to see a woman on the ticket.

Rep. Cathy McMorris Rodgers, R-Wash., vice chairwoman of the House GOP Conference, acknowledged her interest in being Romney's No. 2 in an interview with National Review. She was first elected to the House in 2005.

She said she's not "seeking" to be picked -- and even admirers say she's a long shot -- and wants Romney to choose a conservative and, if possible, a woman.

"Republican women bring an important voice to the table," McMorris Rodgers is quoted as saying. "The big issues that face this country right now — the economy, jobs, the debt, and health care — are on the forefront of people's minds, and especially on women's minds."

The veepstakes have begun in earnest and have taken on the aura of a reality TV show. As USA TODAY's Susan Page reports today, some of Romney's potential running mates are making big speeches, promoting books and are essentially doing "tryouts" in joint appearances with the presumptive GOP nominee.

Sen. Kelly Ayotte, R-N.H., who is sometimes mentioned as a potential VP choice, was on the campaign trail yesterday with Romney. Her stock went up today on Intrade, where she's now given a 4.4% chance of being the nominee. (Florida Sen. Marco Rubio and Ohio Sen. Rob Portman are tops on Intrade.)

Scientists make stunning inner space observations

from Science Codex by University of Leicester:

Scientists using high-powered microscopes have made a stunning observation of the architecture within a cell – and identified for the first time how the architecture changes during the formation of gametes, also known as sex cells, in order to successfully complete the process.

The findings by the international team led by the University of Leicester could impact on the treatment of disorders caused by a misregulation of cellular structures called microtubules. These disorders include Down syndrome, lissencephaly (a brain formation disorder) or cancer.

By exploiting yeast cells, the researchers have discovered for the first time the precise structure adopted by microtubules, which play a vital role in the process of gamete formation, and identified the protein responsible for creating the structure. They further found that the protein needs to be regulated in order to complete gamete formation, failure of which may lead to production of gametes with the wrong number of chromosomes. In humans, these may contribute to disorders such as Down sydrome that result from chromosomal abnormalities.