Saturday, March 31, 2012

A fantastic video showing support for WDSD

An amazing video showing community support of World Down Syndrome Day by Kelly Ryser. Mobile viewers click here.

no R-word in movie "Anchorman 2"

From Spread the Word to End the Word:

You may have heard that Will Ferrell & Adam McKay are going to release a sequel to their popular movie "Anchorman." Well, check out this great conversation on Twitter from a good friend of ours who asked McKay to please not use the R-word in the sequel!! Kudos and thank you Adam!! One victory at a time, our community is making a difference!!

Friday, March 30, 2012

Andrew Banar insprires and motivates with Group Hug Apparel

from the Leamington Post by Pat Bailey:

He doesn’t wear a cape. He hasn’t rescued any damsels in distress — but Andrew Banar is a hero.
And fittingly, the 20-year-old entrepreneur officially earned that designation on World Down Syndrome Day, Wednesday, March 21.

But he doesn’t see himself as a hero.

“I just try to do nice things,” he said.

While the Cardinal Carter student was born with Down Syndrome, he has not let it hold him back. In fact, he has probably accomplished more than many of his peers.

Like starting his own business. Or maybe donating more than $8,000 to local charities. Or even making plans for a post-secondary education.

And that is where his dream began.

For Andrew the dream of going to college motivated him to look beyond any limits that may have been placed on him.

And with the help of an extremely supportive mom, Karen Pickle, Andrew was able to combine his artistic talent with his love of drumming which led to Group Hug Apparel.

His apparel company, which features his own designs and the catch phrase ‘Rock On’, has earned thousands of dollars in just two years in business — probably enough to pay for Andrew’s college education.

But in a selfless decision, Andrew decided to share his earnings with more than 10 different local charities.

“It’s important to give back to the community,” said Andrew, “because everyone needs help — and I like to help people.”

And help them he has.

He spends virtually every weekend at community events — hocking his wares and mingling with members of the community.

Andrew has become a familiar face to many and now a hero — one that puts a face, and especially a smile, to the Down Syndrome Society of Canada.

He and nine others were chosen from hundreds of entries to be one of the society’s heroes.

According to the Canadian Down Syndrome website, the heroes were chosen “to showcase the abilities and accomplishments of persons with Down Syndrome and encourage independence, self-advocacy and freedom for persons with Down Syndrome to make their own choices.”

They are recognized as “strong community leaders who make a difference in the lives of people with Down Syndrome”, it continued.

Andrew epitomizes the society’s definition of a hero.

His mom beams with pride when speaking of her son and his accomplishments — especially his latest, hero status.

“When you have a child with a disability,” she said, “you want them to have the best life possible, without needing to worry about all of life’s challenges.”

“You help them fulfill dreams and goals by working around their abilities,” she added, “and if that means changing things up so they can accomplish them and be a part of society like everyone else — then that is part of my job as being a mom.”

In many ways though, Andrew is a typical young adult — he loves playing the drums, playing Rock Band, watching movies, hanging out with family and friends and heading south for a little vacation.

“He is caring, thoughtful and has a spirit that I wish everyone in the world could see,” she said.
Thanks to his ambitious aspirations — many have already had that pleasure.

“He is my daily inspiration,” she said, “and keeps me focused.”

Thursday, March 29, 2012

Rally Behind Teen With Down Syndrome Being Forced Off Team Due to Age

from NESN from John Beattie:

Rules are rules.

That's what "they" say.

Rules are also meant to be broken -- that's what a lot of other people say. But what are rules, really? Rules -- particularly in sports -- are meant to keep people safe. They're in place to even the playing field and to allow each person, place or thing involved a fair shot.

Eric Dompierre wasn't born with an even playing field -- he was born with Down Syndrome. but he doesn't go home after school at Ishpeming High School to lament his handicap, he goes to basketball practice. At least he used to, according to

Dompierre is being forced to sit out his upcoming senior year of basketball because of an age rule that the MHSAA has in place, stating that players over the age of 18 years old aren't allowed to participate in sports.

"I'd be sad if I couldn't play with them and not have them in my life. They want me to play, and I want to play with them," Eric said.

Dompierre and the Ishpeming school district have already submitted two revisions to the rule. Both have been denied.

"He gets a lot of his confidence from the fact that he gets in the games, and he has a lot of support, not only from people here in Ishpeming, but people from all over the area are supportive of him. If he's told that he's not allowed to play anymore, I think he's going to lose a lot of that confidence. And that's been a key to his development," said Eric's dad, Dean.

A third proposal is in the works as we speak. In the meantime, a petition has been launched by that you can sign (right now) to help this worthwhile cause.

Michigan doesn't have to look far for inspiration as Ohio's High School Athletic Association waives the age rule for students with disabilities. In fact, 23 other states allow students who suffer from disabilities to play high school sports after 18, as well.

So what's the hold up?

The MHSAA handbook has the rule in place for a reason. In fact, all handbooks have very important rules for very strict and ideal reasons. But this rule isn't one of them -- not when it comes to Eric, at least.

This isn't an argument about rules, whether you feel they're meant to be bent, broken, untouched or torched. This is matter of evening Eric's playing field for just one more year and not letting his handicap get the better of him, even if it's for one more high school basketball season. It's also an argument for all future student-athletes with disabilities to be able to at least enjoy sports and enjoy the lifelong lessons that come with teamwork, camaraderie and competition. What the state will sacrifice in rewriting a rulebook will not even begin to compare to the joy Eric gains from being with his teammates for one final year.

To sign the petition that will grant Eric one more year of eligibility, click here>>

update from The New York Times:
A third request, which was submitted March 26, suggests language used in Ohio and seven other states that include similar age-rule exceptions for students with disabilities, with no specific reference to Down syndrome. It could be the Dompierres’ best — and last — chance to change the rule.

Roberts said the “broadening definition” of disabilities led to a discussion of where the line would be drawn, and raised concerns about the potential number of waiver requests. Such an exception could open up the state association to allegations in court, he said, as the lack of an exception did in 1995 in an age-rule case that reached the United States Sixth Circuit Court of Appeals. The association was a defendant, and the court found, according to Roberts, “to decide which disabilities should and shouldn’t apply for waiver put an undue burden on the association.”

Dean Dompierre first did the math regarding his son’s eligibility four years ago, after the varsity basketball coach saw Eric playing in the gym and said, “I’ve got him down as a four-year player.” Eric soon began attending off-season workouts and also joined the football team as a backup kicker. The basketball season ended in March, but Dean started preparing Eric for the possibility that his athletic career was ending when the second request was denied. He answered with more uncertainty when Eric would ask, “How are we doing with the law?”

Dean posted a petition in support of his son on the high school’s Web site on March 23. A week later, more than 70,000 people had signed it.

Dompierre has also sought help from Deborah Moore, the associate commissioner of the Ohio High School Athletic Association, who wrote her state’s age-rule exception.

In Ohio, if a student is considered disabled as defined by the Americans with Disabilities Act, the school’s principal, on behalf of the student, can submit an age-exception application, consisting of an outline of the disability and statements — to gather rivaling perspectives — from the principal and an administrator of a school that plays the student’s school in sports, outlining four main criteria: safety risk, physical advantage, competitive equity and redshirting.

“This is basically a rule of compassion,” Moore said.

Moore could not recall any cases in Ohio that had ended in court. Over nine years, statistics provided by Moore showed 24 disabled high school students had been approved and 16 had been denied, with one pending.

Roberts said the Michigan association had not specifically investigated the success of Ohio’s rule.
It is unlikely that a decision will be made regarding Eric Dompierre until May, when the association’s representative council is next scheduled to meet.

“Ultimately, the rules for Michigan high school athletics are not to be established by online petitions and they’re not going to be established by what happens in other states,” Roberts said. “It’s going to be determined by what the schools of this state want for its operation.”

Wednesday, March 28, 2012

So why do some people act so weird around me?

from Ladies Home Journal by By Hallie Levine Sklar:

Hi, my name is Johanna. I'm 4 years old and I have Down syndrome.I love to dance and swing on swings and play with my dog Ivry. Mommy and Daddy think I'm a pretty cool kid. So why do some people act so weird around me?

"Your son is adorable," exclaimed the elderly blonde. I was standing in our neighborhood park, watching my 23-month-old son, Teddy, pretend to steer a miniature bus. He sat next to another little boy who looked about the same age; they were banging on pretend horns and yelling "beep beep" while ignoring each other in typical toddler fashion. I suspected the woman was the boy's grandmother. She kept bobbing her head and smiling, that broad benevolent grin adults sometimes get when they're not quite sure how to interact with little kids.

"Thanks," I said. I felt sticky warm fingers and turned around to see my daughter, Johanna, then 3, holding on to my legs and grinning.

"Why hello, you," I said, smiling down at her while silently berating myself for letting her walk out of the house looking like such a disaster. She'd woken up grouchy from her nap and wouldn't let me fix her blond ponytails, which sagged despondently like demented bunny ears. She had smears of chocolate all over her mouth and her pink dress, remnants of the brownie she'd eaten in the car on our way over, and her nose was running.

I was about to take out some wipes to clean off her face when I noticed the woman staring. This happens quite a bit with Jo Jo, who has Down syndrome. Most of the time it doesn't bother me when strangers look at my daughter -- their gaze often seems more curious than anything else.
But that day my stomach tightened. The woman was looking at my daughter with bewilderment and horror, as if a chimpanzee had somehow managed to wander into the kiddy park. It was unnerving, but I reminded myself that as the mother of a newborn (my 5-week-old was sleeping in a stroller beside me), sleep deprivation might've made me paranoid. I decided to give her the benefit of the doubt.

"You've got a cute little guy there yourself," I said, pointing at the boy next to Teddy. "Is he your grandson?"

"Yes," she said quickly. She was trying to keep her face expressionless, but her eyes gave her away: They were darting over nervously to Jo Jo. There was a long moment of uncomfortable silence, which the woman broke by nodding at Teddy.

"Your little guy is darling, just darling," she said again. "So handsome. Look at those huge eyes, and those long eyelashes! He's going to be a heartbreaker when he's older."

"Thank you," I said.

Just then a new passenger boarded the toy bus, a flaxen-haired toddler girl wearing a pink dress very similar to Jo Jo's.

"Why hello there," the woman gushed. "Aren't you a pretty little thing. You're darling, just darling. Look at those curls! And that adorable big pink bow!"

I wondered about the reason for the woman's awkward behavior toward my daughter; maybe she'd never met a child with Down syndrome before. I put my arm protectively around Johanna, who had lost interest in us and was singing "Itsy Bitsy Spider," making gesticulating motions with her hands. "This is Jo Jo, my oldest," I said.

The woman looked at my daughter and said nothing. She refused to meet my eyes and instead stuck her hand in her purse and fiddled around, pretending to look for something.

I've seen that silent disdain before and I've dubbed it The Look. It's relatively subtle -- people don't overtly stare but let their eyes flick over my daughter dismissively before they turn their backs. If I'm introduced to them in the park or at a playgroup, they smile hello, give Jo Jo The Look, and then discreetly turn away. I saw The Look on a mom right before she told me she would pass on a playdate because she'd rather her twins be with "other kids who are at the same level developmentally."

People often say hurtful things about Jo Jo, but I've come to realize they usually mean well.

There was the elderly woman at the mall who exclaimed, "How wonderful that you bring her out and don't just send her off to an institution!" Then there was my former coworker, who, when he saw Jo Jo, said, "She's so cute! You're lucky -- most kids with Down syndrome aren't." And the teenage lifeguard at the pool where our family swims, who thought it was okay to insult another teenager by calling him retarded. When I confronted him, he realized his mistake and apologized quite sincerely. "I think your daughter is adorable," the young man told me. "I wasn't thinking of her when I said it. Honestly." The Look is different. It feels as if the people who look at Jo Jo this way aren't even seeing her as a fellow human.

I comfort myself by rationalizing that these people just don't know Johanna and that if they spent a few hours with her they'd realize that in many ways she's just a typical little girl. She loves reading books and dancing around our playroom in her tutu waving her nana's old silk scarves.

Indeed, a few minutes after I walked away from that woman in the playground, the sting started to fade. Teddy and Jo Jo were on the big-kid swings, squealing as I pushed them higher and higher. Jo Jo arched backward and grinned at me. I took in all the details of her face: its beautiful heart shape, her wide almond-shaped hazel eyes, her rosebud lips. I squinted my eyes and examined her closely, trying to put myself in that woman's shoes and see what she saw -- a child with Down syndrome -- but I couldn't. All I could see was my beautiful, perfect child, Johanna.

Tuesday, March 27, 2012

Preview Kelle Hampton's book "Bloom" release 4/3/2012

Love me. Love me. I'm not what you expected, but oh, please love me.

That was the most defining moment of my life. That was the beginning of my story.

From the outside looking in, Kelle Hampton had the perfect life: a beautiful two-year-old daughter, a loving husband, a thriving photography career, and great friends. When she learned she was pregnant with her second child, she and her husband, Brett, were ecstatic. Her pregnancy went smoothly and the ultrasounds showed a beautiful, healthy, high-kicking baby girl.

But when her new daughter was placed in her arms in the delivery room, Kelle knew instantly that something was wrong. Nella looked different than her two-year-old sister, Lainey, had at birth. As she watched friends and family celebrate with champagne toasts and endless photographs, a terrified Kelle was certain that Nella had Down syndrome—a fear her pediatrician soon confirmed. Yet gradually Kelle's fear and pain were vanquished by joy, as she embraced the realization that she had been chosen to experience an extraordinary and special gift.

With lyrical prose and gorgeous full-color photography, Bloom takes readers on a wondrous journey through Nella's first year of life—a gripping, hilarious, and intensely poignant trip of transformation in which a mother learns that perfection comes in all different shapes. It is a story about embracing life and really living it, of being fearless and accepting difference, of going beyond constricting definitions of beauty, and of the awesome power of perspective. As Kelle writes, "There is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky."

Be the first to read Kelle Hampton's Bloom. Free viewing of Chapter One from Bookperk.

Kelle Hampton's Blog post on her book Bloom.

Watch the book trailer below, featuring Kelle’s photographs:

Amazon Reviews:
“In her tender and genuinely beautiful memoir, Kelle Hampton encourages us to not simply accept the unexpected circumstances of our lives, but to embrace them like the things we wished for all along.” (Matthew Logelin, New York Times bestselling author of Two Kisses for Maddy)

“Bloom is one of the most emotionally stirring books I’ve ever read…. This story is a reminder that perfect, when it comes to human beings, is such a relative (and irrelevant) term…and that a mother’s love for her child is a powerful, eternal, unshakable force.” (Ree Drummond, New York Times bestselling author of The Pioneer Woman Cooks)

“Kelle Hampton…reminds us that life may not always look pretty or perfect, but it is always beautiful…. She has indeed made of her life something ‘wild and precious’ and her book, like her two beautiful girls, is a bundle of joy. I finished it reluctantly and with a full heart.” (Claire Fontaine, national bestselling author of Come Back: A Mother and Daughter's Journey Through Hell and Back)

A girl's life successes after open heart surgery

from Ealing Gazette by Poppy Bradbury:

A young girl with Down syndrome has come leaps and bounds since surviving open heart surgery as a newborn.

Ten-year-old Lucie Fickling weighed just seven pounds at birth and under went major surgery for a heart defect aged just three months old.

Despite a difficult first year, the sprightly youngster has gone on to win top awards in scouting and gymnastics.

Lucie joined the First Northolt Sea Scouts, based in Dabbs Hill Lane, Northolt, as a beaver four years ago. After months of hard work to collect 15 badges, two weeks ago she was awarded the Chief Scouts Silver award - one of the highest accolades for a young cub.

But that was not her only taste of success.

The sporty youngster has travelled to Florida to compete in the World Cheerleading Championships and recently won two silver medals for the vault and floor at the regional finals of the Gymnastics Movement for People with Disabilities.

And now Lucie has been nominated as Young Person of the Year in the Ealing Gazette's annual Pride in Our People awards by her proud godmother Dawn Ward.

She said: "She's so enthusiastic in everything she does despite her disability and she never lets it hinder her. She does find things difficult but she perseveres and perseveres until she gets there."

Her mother Tracey Fickling said: "The first three months of her life she slept and we couldn't do anything with her because of her heart. She was in hospital for three weeks and slowly progressed.

"She's excelled so much. She loves her gymnastics. She works so hard and she's a determined little girl. It makes me so proud because she has to work so hard to achieve what she does."

Tracey said joining the scouts was a great opportunity for Lucie, who attends Hedgewood Special School in Hayes, to mix with mainstream children.

Monday, March 26, 2012

World Down Syndrome Day "Building Our Future" Conference Video

From the United Nations Webcast:

“Building our future” Conference at the United Nations, New York City - World Down Syndrome Day 3/21/2012

iPad: more than a toy it's a powerful teaching tool

From PRWeb from ACDS:

The iPad isn't just about fun and games, it's a voice for those who are unable to or just learning to speak, and a powerful teaching tool. For the last year, many students at ACDS have been able communicate, some for the first time, thanks to the iPad.

"With our population, it's exciting to use 21st century technology to help us with our goal of preparing children to transition on into the public school setting at the age of 5," explained Cecilia Barry, SBL/SDL, principal of ACDS, an early intervention and special education preschool working with individuals with Down syndrome, Autism spectrum disorders and other developmental disabilities and their families.

The road to the iPad began when Jessica Litwack, one of ACDS' speech/language pathologists first heard about how iPads were being used at a convention of the American Speech & Hearing Association in 2010. When she got an iPad as a Christmas present and played with it, she saw the potential. Then there was a student, diagnosed with Apraxia, an oral-motor speech disorder, who had difficulty communicating verbally. His tech savvy parents had discovered the iPad was an effective communication aid for their son at home and his speech therapist coordinated utilization of the iPAD for home and school. Thus, an idea was born.

With donations from the Parent Teacher Organization, individual parents, as well as one provided by the Nassau Suffolk Chapter of the Autism Society of America, ACDS now has 11 iPads. Ideally, ACDS would like all 15 pre-school teachers to have an iPad; right now they are used primarily by the speech pathologists. Better still, ACDS aspires to create a library of iPads that could be loaned out to students.

Using the iPad, ACDS' littlest ones, those ages 2-5, have been able to communicate -- some for the first time. The touch-and-swipe screen gives them the ability to express themselves and serves as a tool that enables these children to participate in classroom activities with their peers.

"The iPad is being used across disabilities and has been remarkable in particular for (use with children with) autism spectrum disorder as well as those with Down syndrome,” said Barry.

The iPad is versatile and can be used as an augmentative device to help individuals communicate. However, the iPad is significantly less expensive than the thousands of dollars that other augmentative devices can cost. It's also just cool, fun, and socially acceptable which matters to children who have shown that they are motivated to learn with the iPad.

"With the iPad, children are motivated to focus and pay attention for a longer period of time. Many children with Down syndrome and autism spectrum disorders are visual learners, so the iPad appeals to their learning style," ¬said Barry. "These kids are not reading, they're using pictures to communicate. For example, they can touch a picture of a sandwich or chicken nuggets on the iPad screen to indicate their preference and a voice recorded on the iPad states their preference in response to their touch," explained Litwack.

Another effective teaching tool of the iPad is it’s camera. It enables the iPad to become more dynamic and specifically geared to each child’s needs. An ACDS teacher recently used the iPad as a means of assessing knowledge of identification of classmates for a child who was unable to speak. Using the ipad’s camera, the teacher took a picture of the individual children in the classroom. The student was shown the iPad with these pictures and was asked to identify his friends when they were named. By touching the pictures on the iPad he was able to pick them out one by one – thus displaying a skill no one previously knew he had.

The iPad has opened a whole new world. "Everybody loves The Itsy Bitsy Spider. But it's different when the kids can touch the screen and it comes to life for them," said Barry.

There are numerous apps designed for children with special needs. “The iPad has apps that not only teach readiness skills in a fun way, but many apps also have the ability to automatically record data on students progress,” said Tricia Leahy, special education teacher. “We can monitor their progress with data that is automatically calculated at our finger tips!”

What's key, is ACDS' coordination with parents. “If an upcoming classroom topic is winter and the target words are coat or hat, I would have parents review the vocabulary pictures on their child’s iPad with their child so that the child would be prepared for the lesson in school. This prepares them to participate, to have a voice with the lesson," said Michele Harrington, Speech/Language Pathologist. The goal, if the child has their own iPad, is to have them practice at home.

Much is said about how technology is being misused by young people, but for the children at ACDS, technology is changing lives. "This is a great opportunity" said Barry.

ACDS, located in Plainview, New York is dedicated to providing lifetime resources of exceptional quality, innovation and inclusion for individuals with Down syndrome, Autism and other developmental disabilities and their families. ACDS has been providing programs and services in and around Long Island for 45 years. ACDS currently serves more than 750 children and adults, providing services that include Early Intervention and preschool special education programs, respite and recreation programs for children, teens and adults, adult Medicaid service coordination and seven supervised group homes in Nassau County.

Friday, March 23, 2012

Medicaid Eligibility & Enrollment Final Rule Webinars

The Centers for Medicare & Medicaid Services, Center for Medicaid and CHIP Services is hosting a series of webinars to explain key components of the Medicaid Eligibility final rule.  The webinar materials, including an audio recording and transcript, will be available after the event.
Upcoming seminars:

March 29, 3:00 p.m. EST MAGI Methods and Household Scenarios
April 5, 3:00 p.m. EST:  Coordination across Medicaid, CHIP, and Affordable Insurance Exchanges
April 19, 3:00 pm. EST:  Application, Verification, and Accessibility for individuals with disabilities and those with limited English proficiency
April 26, 3:00 p.m. EST:  MAGI Screening & Renewals
May 10, 3:00 p.m. EST:  Eligibility & Enrollment Wrap-up

Administration for Children and Families
U.S. Department of Health and Human Services

Thursday, March 22, 2012

Diana Stolfo proud to serve as a voice for Down Syndrome

from North by Karen Kleinmann:

Though March might symbolize Irish luck along with the official transition from the winter months to spring beginnings, another event will give additional meaning to the month as World Down Syndrome Day has now been officially recognized by the United Nations.

Allendale resident Diana Stolfo was chosen to represent the National Down Syndrome Society at the UN's March 21 conference recognizing it as World Down Syndrome Day. Above, Stolfo works at her job at the Gap in Ridgewood.

The UN held a conference at its headquarters in New York City on March 21 to celebrate the event and there representing the National Down Syndrome Society (NDSS), which collaborated with other organizations for the event, was self-advocate Diana Stolfo, a current Allendale Orchard Commons resident.

The UN officially recognized the day after Down Syndrome International (DSI) and countries around the world had partitioned the organization to name March 21 after Down syndrome, which is a life-long genetic condition in which varying degree of learning and/or physical disabilities may be present.

Stolfo said she likes being an inspiration to others and thinks it's important that people put aside notions that "we can't do anything. We can, we just have to do it differently," she said.

The former Ridgewood resident added that she enjoys things as much as other people and can work and live independently, but more importantly, she's never been hindered by her condition and continues to follow her dreams and make them become a reality.

"NDSS is considered a sponsor and we wanted to have a wonderful self-advocate be at the event. We chose Diana. We wanted her to be front and center and to shine instead of just having someone from our organization," said Julie Cevallos, vice president of marketing for NDSS.

She added that March 21 being recognized on an international level will help promote the condition and fight stereotypes associated with Down syndrome.

The 501(c)(3) nonprofit's mission is to be the "national advocate for the value, acceptance and inclusion of people with Down syndrome," Cevallos said, and this world recognition fits with NDSS' envisioned world in which "all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities," she said.

Stolfo joined Cevallos Monday night on NBC New York's Nightly News with Chuck Scarborough to speak about World Down Syndrome Day. "It'll truly be an inspiring event," Cevallos said of yesterday's event. "I think it's important that it's recognized globally as every country is in a different point of acceptance. Some have been very instrumental in having more inclusion in schools and society. But it's important not just as a country but as a world to accept and include people with Down syndrome and other special needs."

Serving as an inspiration Cevallos said Stolfo "exemplifies everything we want the day to stand for, including having people integrate in society, schools and community life" and that Stolfo serves as a role model to many.

"Diana is a wonderful example for people worldwide of what you can do when you are included and accepted," Cevallos added.

On a local level, Stolfo has served as an inspiration to others and made strides to bring attention and awareness to people with special needs, whether it's advocating for greater access to transportation or promoting additional special needs housing.

Stolfo said she enjoys speaking engagements and wants to educate and inspire people to learn more about Down syndrome.

To date she's participated in 12 speaking engagements since 2010 and Wednesday's event was her 13th public speaking event, which does not include interviews on news networks.

In October 2010, when Allendale opened its first special needs housing called Orchard Commons, Stolfo sought to be among the 30 adults that would be given the opportunity to live there independently.

Since that time, she's worked with United Way, which supports expanding housing for special needs, doing speaking engagements and advocating for greater access to transportation in Allendale and bringing awareness to the need of transportation access for those with special needs at a Bergen County Freeholder public hearing.

She said developing more housing for people with special needs is important and she's talked with United Way three times between July and November and also spoke at the Governor's convention on housing and economic development. She also addressed the ARC & Cape Resource Center for Bergen County Special Services.

She's been the Grand Marshall for the Down Syndrome Buddy Walk of Bergen County and spoken at the Ridgewood Access for All weekend testimonial.

In 2011, Stolfo spoke at the National Down Syndrome Society Gala at the award presentation in February, and spent several days in May and June speaking at the DD Connect Housing Panel, Bergen County Freeholders on transportation, NJ TIPS, NJ Transit in Trenton on access for transportation for those with special needs.

Stolfo said she shares and celebrates her life and accomplishments in order to inspire others.

"We've been very blessed," said Stolfo's mother, Joanne. "Diana has been able to accomplish so much and she lives in a great community. She attended ECLC as a senior and was in the Ridgewood School system before that, which also gave her a great education."

While Stolfo attended school in Ridgewood, she participated in DECA, was on the honor roll and joined the student council.

But becoming a self-advocate started when she was thinking of running for president of the student council, she said.

"I said, 'I'm not going to run for president, I'm going to run for special needs,' and I did," Stolfo said.
She became the representative for those with special needs on the student council.

After she started school at ECLC of New Jersey in Ho-Ho-Kus for her senior year of high school, Stolfo became the student council president and was also the newsletter editor.

"Diana's so inspiring, especially to other people who may have other challenges or for parents who might not know what to expect," said Cevellos, who added that Stolfo will be receiving an award at a later NDSS luncheon for her involvement.

World Down Syndrome Day

World Down Syndrome Day had previously been established in 2006 by DSI, with the goal of "raising awareness and mobilizing support and recognition of the dignity, rights and well-being of people with Down syndrome across the world," according to its website.

The UN's event, "Building our Future," featured speakers from the sponsored organizations, the Missions of Brazil and Poland to the UN, as well as other collaborators around the world.

The day included information about the significance of having it on March 21, as Cevallos said it is the 21st day of the third month of the year - a symbol of the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome.

Statistics indicated that one in every 691 babies in the United States is born with Down syndrome, and more than 400,000 people affected by Down syndrome in the United States and an estimated 7 million people in the world and people with the condition have an increased risk for congenital heart defects, thyroid conditions, Alzheimer's disease, childhood leukemia and respiratory and hearing problems.
Cevallos said that the day is not just focused on what makes those living with Down syndrome different, but the emphasis is on celebrating who they are as people in addition to educating the world about the condition and offering stories of inspiration.

"Public awareness to promote the value and inclusion and acceptance of people with Down syndrome," Cevallos said. "I think we're making great strides but not consistent in the world and country, the more we can share the more we can all learn."

She added that "people don't always understand or know what to expect or no anyone with Down syndrome, education and awareness is one thing, schools are tough, teachers are expected to provide education on an individual basis yet include everyone as part of the larger group, so it's not easy. It takes time to meet the needs of all children."

NDSS' My Great Story collection can be found at for more examples of what it means to have Down syndrome in today's world.

Combating stereotypes

"We try to fight stereotypes and it's important that it has its own day," said Cevallos. "March 21 characterizes the condition. But they are people first. They are living with a condition that gives challenges, and it's across the board, the challenges are not the same and they range in degree."
One stereotype of those with Down syndrome is that they cannot maintain a job or live independently.
But Stolfo proves that's not always the case, while certain jobs may be better suited for people with specific types of special needs, it shouldn't be used as a disclaimer for all people with special needs, she said.

She's proud to announce that she has four part-time jobs, one of which she's had for more than a decade.
Stolfo said it's important that people recognize that Down syndrome is a condition, but it doesn't shape who she is.

For her jobs, she currently works as a receptionist at Our Lady of Mt. Carmel church rectory in Ridgewood; is a clerical assistant at ECLC of New Jersey in Ho-Ho-Kus; is a dance assistant at Meaningful Movements in Midland Park; and works as a sales and stock associate at the Gap in Ridgewood.

She's worked at the Gap for 12 years, she said, and previously worked in a supermarket, restaurant and in a real estate company in various positions.

Stolfo's also had several internships, including working at Valley Hospital as a volunteer, a teacher's assistant at a summer special education program in Franklin Lakes and volunteering at the Ridgewood Chamber of Commerce.

Another stereotype Stolfo said is not true is that people with special needs cannot have meaningful relationships.

She said she enjoys living independently at Orchard Commons and has been dating her boyfriend for three years, who also has Down Syndrome and lives at Orchard Commons.

"I also like Zumba and exercising, movies and dancing," she said. "We're just like everyone else - we can see, hear and speak. I want us to be heard by our voice and not anything else."

Stolfo has also been involved with the Special Olympics as a gymnastic athlete and been awarded with the president's award for excellence, Rebecca S. McDonald Transition Award and the Eagle of the Cross Award for Roman Catholic Youth Group Leadership.

She said she personally doesn't like the word "disability" because it implies "we're not able to do something - that we don't have the ability. What matters who is you are. I changed the word to 'differently-abled' because what matters is what's in our hearts."

Wednesday, March 21, 2012

World Down Syndrome Day event at the UN in NYC

DSD is celebrating WDSD with the Global DS community at the United Nations In NYC. 84 nations endorsed the UN proclamation to make 3/21 WDSD.

Watch it live at:
Select channel 6

Amazing speakers including self advocates!

Goto more info.

Monday, March 19, 2012

Help us get special WDSD acknowledgement from Google

World Down Syndrome Day is Wednesday 3/21, please email Google at and request that they feature this artwork by Mark Jones on their home page as a Doodle in honor of WDSD.

Surf's Up for Down Syndrome

from Daily Pilot by Steve Virgen:

Scott McCall is no stranger to the water.

The 30-year-old grew up in Huntington Beach. He learned to swim at Pacific Sands Cabana Club with his sisters, Jayme and Megan. But McCall always wanted to surf.

He received special lessons at the Surf's Up for Down Syndrome event Friday. McCall was one of several potential surfers with Down syndrome learning from pros and experts near the Huntington Beach Pier.

Former Angels announcer Rex Hudler's Team Up for Down Syndrome, in conjunction with the International Surfing Museum, put on the inaugural event, which also featured live and silent auctions, as well as a banquet at Sandy's Beach Grill.

The sun glistening off the waves wasn't the only radiant scene Friday afternoon. There were smiles galore and laughter from amazement, as adults and adolescents with special needs rode waves.

McCall's father, John, said his son had tried surfing before, but had not been able to stand up. McCall stood up for a bit and caught some waves Friday, said Danny Nichols, his teacher.

"Scott killed it," Nichols said of McCall's sessions. "He did a great job. We paddled into a few waves. He stood up and had good balance. Out of eight or nine waves, he stood on five of them."

Nichols, a former pro who lives in Huntington Beach and owns a silk-screen T-shirt business, found out about the event from Brett Barnes, the owner of Duke's Huntington Beach.

Nichols said he was honored to help out and gained joy from working with people with Down syndrome.
John McCall said he was excited for his son. "I want to get him on the board so we can surf together," he said.

Hudler, a former Major League Baseball player who went on to become the Angels' color man, called the surfing portion of the event the highlight of the day.

Hudler and his wife, Jennifer, have four children. Their 15-year-old, Cade, was born with Down syndrome.

They watched Cade learn and try to surf with all his friends.

"I've been emotional the whole day to see the fun they had out here," Rex Hudler said, standing by the shore. "The typical kids showing them and how much fun they were having was also great. And to see that, given a chance, kids with Down syndrome can do anything. That's why I call it 'up syndrome.' It's not Down syndrome."

Friday, March 16, 2012

Down Syndrome Research and Treatment Foundation's plus15 campaign

I'm writing from the plus15 campaign, which is the Down Syndrome Research and Treatment Foundation's campaign to spread the word about Down syndrome cognition research.  DSRTF supports research to improve learning, memory, and speech in people with Down syndrome, with the goal of greater independence and increased cognitive ability for our loved ones.

We're excited about World Down Syndrome Day and have planned a few ways to celebrate.  We wanted to reach out and let you know, in the hope that you might share our excitement and pass the word along to your community.

Here's what we have going on:
  • 3-to-1 donation matching on 3/21.  Give to DSRTF on 3/21, and your donation will be matched 3:1, thanks to the generous support of one of our funders.  This is an incredible one-day opportunity to maximize your donation to DSRTF.  Please mark your calendars and give! $15 becomes $60, $25 becomes $100, and every bit counts. You can donate here:
  • Webinar.  In honor of World Down Syndrome Day, DSRTF is hosting a special webinar with Dr. Roger Reeves of Johns Hopkins University.  As you may know, Dr. Reeves is a leading researcher in the area of Down syndrome, having studied it for over 25 years. DSRTF is a proud supporter of Dr. Reeves’ work, and we hope you will join us for this one-hour webinar about Down syndrome cognition research on Wednesday, March 21 at 10:00 AM PT/1:00 PM ET. Sign up here:
  • plus15's World Map.  What would an increase in cognitive ability mean to you and your loved one with Down syndrome? plus15 is creating a world map — available here:  —  with testimonies, photos and videos to show the world, and our legislators, the importance of cognition research in providing greater opportunity to those with DS.  To participate, send your first name, city/state, a video or a photo, and a note that completes the following sentence:  "A 15 percent increase in cognition means that my (son/daughter, etc.) could _____________."  Upload to our Facebook page at or send it via e-mail to  Together we'll put Down syndrome on the map.
Grassroots support is essential to efforts like ours, and we count on word of mouth — or in this case, word of blog — to help spread the word about what we do.

You can visit our web site for more info about plus15 and DSRTF, and of course I'd be happy to answer any questions you might have.

Thursday, March 15, 2012

Two friends with Down syndrome competing in the LA Marathon

from the Examiner by Lindsey Rowe:
Angela Armenta & Antoinette Mendoza are two friends who have Down Syndrome, but they are not letting that stop them from completing the LA Marathon March 18th!

These two determined ladies are part of Team ARC, an organization that helps individuals with developmental disabilities and an official charity of the LA Marathon. According to ARC, Angela & Antoinette will be the first women with Down Syndrome to complete the LA Marathon, and they are beyond excited to hold that title! Their inspiration came about when they saw their friends Rafael & Tim, two men with special needs, complete five marathons over the last few years.

Angela will embark on this journey with her friends by her side, along with her brother Joe and sister Rebecca, encouraging her to complete the 26.2 mile journey. Since the beginning of her training, her family says that Angela’s heath has improved and that through this rigorous process, her personality has come alive, her speech has improved and she is actively using new vocabulary words she has learned while training. Despite being diagnosed with a hole in her heart at age 5, with medical clearance from her doctor, Angela is determined to succeed and ready for this challenge!

Antoinette’s dream is to finish the marathon alongside her two friends, Rafael & Tim. Already an avid 5k participant, she is very proud of the medals she currently has and cannot wait to add the LA Marathon medal to the collection. Antoinette beams when she tells people about the race “I can do it, run all the way from Dodger stadium to the ocean, I try my best, 26.2 miles, I love it!” Antoinette will be running with Rafael, Tim, an ARC staff member who has volunteered to assist them and a Physical Therapy student from USC.

As these two inspirational ladies make history, Team ARC hopes to bring awareness to the developmentally disabled community and the importance of health & friendships, while giving hope to parents of children with special needs.

Wednesday, March 14, 2012

Princess Diana's goddaughter who has Down syndrome ‘When will I be normal?’

from the Daily Mail by Rosa Monckton:

Having been away for a few days, I walked into the house to be met by my 16-year-old daughter, Domenica, usually so happy and bouncy.

‘Why am I a Down’s Syndrome?’ was her greeting. ‘Why can’t I do maths?’ Followed by the most heartbreaking question of all: ‘When will I be normal?’

As a mother, you always worry about how your children will cope when you are not there, but you can reconcile yourself to the idea that they will be fine, and independence will be the making of them.

Every September, there appears a flurry of agonised articles by mothers wondering how they will cope with empty-nest syndrome as their children leave home for university.

As a mother of a child with a learning disability, I would give anything to have that problem, and I read these articles through tears of rage.
 For every parent of a disabled child, the thought of that child becoming an adult is terrifying and all-pervasive.

I know that in some sense Domenica is never going to grow up, even if the law, once she turns 18, will regard her as an adult like any other.

Domenica, despite her encyclopaedic knowledge of teenage programmes on the Disney channel, cannot tell the time.

She is unable to tie her shoelaces or her dressing-gown cord. She cannot put her hair in a ponytail or go out on her own. And none of this will magically change when she becomes an adult in the eyes of the law.

This turning point is a huge problem for those with a learning disability. There is no allowance for the fact that a disabled child will become a disabled adult, seemingly no understanding that a lifelong learning disability is exactly that – lifelong.

Overnight, vulnerable children are thrown into the lion’s den of adult services, often with disastrous results.

There needs to be a recognition that a learning disability does not change from childhood to adulthood. Perhaps part of the problem is the replacement of the word ‘handicapped’ with ‘learning disability’.

The impression created is that we are dealing with people who are just a little bit slow.In general, when people talk about disability, they mean a physical disability. In those cases, the person with the disability is as self-aware as anyone is, but when you are dealing with a mental disability the issues are much more fraught.

I find it very difficult to explain to Domenica why the people she was at school with have moved on, and all seem to be doing things she is unable to do.

The looming question, that colours every decision I make, is: what will happen to Domenica when we are no longer around to look after her? She fears independence because she is self-aware enough to know that it will be very difficult for her.

I wanted to meet other parents on the same journey, and this became the subject of the BBC documentary Letting Go, to be shown this week.While making the film, I met a mother whose life expectancy was limited, and who had to make the terribly painful decision to move her teenage son out of her home so that he would have time to adapt to living somewhere else before she died. 
 I am in touch with one mother who is in her late 80s, and her disabled son, who is now in his 50s, has always lived at home. He is not capable of living anywhere else and she is confronted with her own mortality. It is far too late for him to adapt to living elsewhere.
 Domenica has always been in mainstream education. A school for pupils with mild learning difficulties would perhaps have been better – madness, a child like Domenica sitting in a chemistry class – but, within our county, they have all been closed.
 She has now been lucky enough to get a place at Chickenshed, an inclusive theatre company and performing arts day school in North London. She is doing a BTEC extended diploma in performing arts, a sixth-form course.

She is happy there, but is now convinced that she could have a career on the stage, and be a pop star and a supermodel. She sees no reason at all why this should not be possible. I realise many children of The X Factor generation have these delusions, but it is particularly pronounced in a child like Domenica.

I don’t in any way want to limit her horizons, but I feel that I must manage her expectations. I have to make sure Domenica has certain skills that will perhaps, in the future, enable her to get out to work, and be part of a community.

She has already done a week-long waitressing course at Chalk Farm Hotel near Eastbourne, which employs and trains only people with learning disabilities, and I will encourage her to do more in that vein.

It is very important for all people with learning disabilities that they become as independent as possible, and don’t stagnate in some form of institutional care, staring slack-jawed at a television screen all day long.

It is vital to have the sense of self-esteem that comes with doing some honest work, if they are at all capable of it.Where these young adults live is an overwhelming problem for parents. The disability lobby in this country has been driven by those with physical difficulties, while those with a learning disability have been dragged along in their wake.

While it is absolutely right that people with physical disabilities should be living independent lives, it is not necessarily appropriate or even possible for those who are more vulnerable and trusting.

There is an ideology that says that everyone is the same, and has the same right to live independently. This is putting people with learning disabilities into inappropriate accommodation, often with only two hours of care a day, and in flats on their own.
 The sense of isolation that they feel, but cannot express, is heartbreaking to witness. What sort of society thinks this could be a suitable way to live? What sort of society allows the social worker, without the parent present, to interview the ‘client’, and after half an hour decide a flat in the community is an appropriate setting?
 Some inspirational parents I know, unable to find somewhere suitable for their daughter, rented a house in Hove, where she now lives with four friends.
 There is always someone there at night, and the number of carers in the day depends on what they are doing.
 The atmosphere in the house is that of any group of young people living together. There has been such a demand for places that they have now opened two other houses. They have constant battles with the local authority, which would prefer for these young people to be living in single-occupancy flats.

One mother told me that her daughter, who has Down’s Syndrome, was moved into a flat on her own. After six months, she had put on five stone. Her mother spoke to the social worker, who replied that ‘It was your daughter’s choice’ to eat all day long, and cited the Human Rights Act. This young woman is not capable of making such a choice, and needs support and guidance, not another packet of crisps.

Another mother wrote to tell me that an Adult Services Reviewing Officer had written to her daughter, asking her to think about her ‘goals for the year’, and what she was ‘hoping to achieve’. Her daughter cannot walk, talk or feed herself, and has no mental capacity.
We have a system in place in our country that is supposed to support the most vulnerable, but it is failing. It has become so complex and unintelligible that it is not helping those who need it most.
 I accept a system that hopes to deal with disability from cradle to grave cannot have clear-cut simplicity, but over the years there appears to have been little joined-up thinking, and I suspect even the professionals have lost their ability to make good decisions.
 One vast improvement would be to have a single assessment of the needs of families, rather than the endless to-ings and fro-ings between various departments that currently makes the system both intimidating to the user and far too time-consuming.
 In opposition, David Cameron, who himself was the father of a severely disabled child, told me that this would be his preference, but nothing has changed.
 I have had dealings with Government: I have sat on various committees, had meetings with Ministers, and even one with the Prime Minister, but there seems to be a bureaucratic inertia that is holding the Government back from making the necessary changes.
 In 2010, George Osborne announced an extra £2 billion a year for social care by 2014 in his Comprehensive Spending Review, but this money – supplied by the taxpayer and granted to local authorities – is not ring-fenced.
 Local authorities are not legally obliged to spend the money on what it was intended for, resulting in a postcode lottery for parents.
 The Government defends this on the grounds of ‘localism’, and says it is up to the local authority to decide whether to use it for the purpose it was given.

As a result, I know of several parents who have had to move away from their families and friends in order to secure better provision.  All I want for Domenica is for people to accept her as I do, to recognise the contribution she can make, and to keep her safe.
 All my maternal instincts scream at me to keep her with me at home for ever. But then what happens when we die?
 And here is how I answered her questions. ‘Why am I a Down’s Syndrome?’; ‘You’re not, you are Domenica.’
 ‘Why can’t I do maths?’;  ‘I can’t either.’
‘When will I be normal?’; ‘No one is normal, we are all different.’
But some are more different, and more vulnerable than others.