Wednesday, October 31, 2012

Friendship and games

Friendship, fun, games, learning.  I love Special Olympics.  My family loves Special Olympics.  Our son loves Special Olympics.  We have learned so much and gained precious friendships.

I hope you enjoy these smiles Special Olympics style as much as I do.

Be gentle.

Monday, October 29, 2012

Celebrate Down Syndrome Awareness

I was contacted by another family to support their cause for Down Syndrome Awareness and education in the medical schools.  What a great cause!  Let's educate our new physicians with the facts.  Please support my new friend's cause.

Celebrate the UPside of Down™ during National Down Syndrome Awareness Month: Dispelling Myths and Smashing Stereotypes

Dr. Julia Kinder is celebrating National Down Syndrome Awareness Month with a Sweepstakes, Photo Contest, and a Petition to Medical School Faculty across the United States.

Click here for the National Down Syndrome Awareness Month page! Celebrate the UPside of Down™!
Celebrate the UPside of Down!
Quote startMy ultimate goal is for the birth of every baby with Down syndrome to be celebrated, and for every baby to receive the care required to maximize their developmental potential.Quote end
Cape Girardeau, MO (PRWEB) October 18, 2012
Dr. Julia Kinder, practicing physician, national speaker, and an advocate for children with special needs, is celebrating National Down Syndrome Awareness Month with an online Photo Contest, Sweepstakes, and a very important Petition. These can be found on her website, The photo contest gives families of children with Down syndrome an avenue for showcasing their child’s abilities. The sweepstakes offers fun awareness products created by Dr. Kinder while drawing attention to dispelling the myths and stereotypes surrounding Down syndrome. The newly launched petition calls upon medical schools to provide more training on Down syndrome.
“No parent should feel like their baby's life starts out with a death; the death of their dreams for the future, the end of their hope for a happy, healthy child,” said Dr. Kinder, owner of “But it happens every day, because physicians who deliver the diagnosis of Down syndrome often give inaccurate, incomplete, and negative information that intensifies the unfounded fear of this diagnosis.”
Currently physicians do not receive training on giving the diagnosis of Down syndrome in a productive way, according to Dr. Kinder. Nor do they learn of needed resources for parents and baby. Medical education focuses on the possible health and learning issues, which not every child will encounter. Physicians do not understand what a child with Down syndrome is like outside of the medical aspects. What is crucial to every baby with Down syndrome is that they begin receiving early intervention and therapy immediately. Medical education does not cover this topic, therefore, physicians are missing a crucial piece of information to pass along to new parents.
Dr. Kinder has been a practicing physician for the past decade. However, eight years ago when her daughter was born with Down syndrome, she discovered her medical training did nothing to prepare her for raising a child with Down syndrome.
“Ella is completely healthy and smart, which contradicts everything I learned about Down syndrome,” said Dr. Kinder. “Medical school taught me about a laundry list of health problems and mental retardation, none of which applied to my child. I had no practical information on how to take care of her. I didn’t know she needed to start therapy immediately. When she was born, the doctors and hospital gave me no information or resources. I left the hospital without so much as a pamphlet.”
According to Dr. Kinder, the information on Down syndrome that doctors give to new parents tends to focus on the potential medical and learning problems. Doctors have not been trained to explain to these new parents that a child with Down syndrome is more like other children than they are different, and that many of the medical issues never materialize. Parents leave the hospital with the impression that their child’s prospects for a happy, healthy, and fulfilled life are grim. Unfortunately, many parents admit they struggled to connect emotionally with their baby during those first few months, as if unconsciously attempting to prepare for some awful manifestation of the diagnosis.
“I have decided to tackle this issue head-on,” states Dr. Kinder. “It is unacceptable for the medical community to contribute to a new parent’s fear of their own baby. This negative emotional state can prevent parents from providing the appropriate care their newborn needs. Babies with Down syndrome must start early intervention and therapy immediately - it should not be delayed because doctors fail to give parents complete and accurate information, along with resources for support.”
Dr. Kinder has spent eight years speaking to the medical community, future teachers and therapists, and to the general public regarding Down syndrome, as well as counseled hundreds of new parents. In 2009 Dr. Kinder began blogging on the topic, giving new parents hope and direction. She has devised fun ways to dispel the myths and darkness by promoting positive phrases such as “My kid has more Chromosomes than yours” as well as the “UPside of Down” concept. She encourages others to proudly display the UPside of Down with car decals, shirts, bracelets, and other awareness products that she has developed. Dr. Kinder has created a tribe of families who support each other and spread awareness. Their motto is, “Go beyond just surviving [with Down syndrome] to Thriving - become a Thrivalist!”
“I want to show the world the UPside of Down syndrome and I want to improve the education medical students receive on helping new parents,” said Dr. Kinder. “My ultimate goal is for the birth of every baby with Down syndrome to be celebrated, and for every baby to receive the care required to maximize their developmental potential.”
To get involved and sign Dr. Kinder’s petition please go to To learn more about her website’s Down Syndrome Awareness Month activities and to participate in the celebration, please visit
About Dr. Julia Kinder
Dr. Julia A. Pewitt Kinder is an accomplished national speaker, early childhood education advocate, author and practicing physician. She and husband Mitch reside in Cape Girardeau, Mo., with their three children, Ella and twin boys Paxton and Dexter. Dr. Kinder is licensed to practice in both Missouri and Texas and is in private practice with her brother in Jackson, Missouri. She also serves as a hospice physician for Tri-County Hospice. In addition, Dr. Kinder is a certified fitness instructor and promotes easy ways to incorporate exercise into daily routines. More information about Dr. Kinder can be found on her website at

Be gentle.

Sunday, October 28, 2012

The right to vote. Is it a given for those with Down Syndrome?

No......  And this young man fought for his right to vote and won.  As a parent we need to be aware this can happen to our child too.

Clinton Gode (left) learned to cook from his dad, Art Gode, a retired welder.  As is often the case with fathers and sons, Clinton and his dad don't share the same political beliefs.  "I am my own person," Clinton said.  That's true, Art said, nodding his head: "He will let you know what he thinks."

LAKE HAVASU CITY - All his life, when Clinton Gode wanted to do something -- learn to swim, ride a quad, show goats in 4-H -- his parents helped him figure out how to make it happen. No matter that he has Down syndrome.

But when he turned 18, his parents became his legal guardians in order to handle his health care and his finances -- "Clinton would give you his last nickel if you asked for it," his dad says, chuckling. And Arizona law had been clear since statehood: If you can't manage your own affairs, you can't vote.

Clinton's parents had explained it to him. But it didn't sink in until the moment in a Mohave County court when a judge approved the guardianship.

"It made me feel really, really bad," Clinton says.
He turned to his dad on the bench next to him and said, "I want the right to vote."
Art Gode looked into his son's crestfallen face and told him, "We'll see what we can do."
"We have never accepted 'no' in his life, and that was just another 'no,' " Art says. "We just do not flat accept 'no.' "

It would take Clinton, his parents, a band of advocates for people who have disabilities, a willing lawmaker and a judge before they would get a "yes."
Clinton, now 25, will vote for the first time Nov. 6.

And that will mark another first: His will be the first ballot cast under a new state law that allows people with disabilities who have guardians to petition the court for the right to vote.
Clinton has been voting for as long as he can remember.

At home, it was his dad calling the family from the kitchen: "Hands in the air if you want spaghetti for dinner." At the dinner table, Clinton's parents made a routine of talking with him and his sister, Cassy, who is three years older, about what was going on at school, in their town, and the world.

"I think that is part of where Clinton's confidence comes from," his mom, Janet, says. "Whether it is right or wrong, we allow him to say it, and we listen to what he has to say."

At school, Clinton helped choose his class representative on the student council. At 16, he ran for sergeant at arms of the local 4-H club -- and won. He spent a week at a leadership conference in Washington, D.C., touring the city with the club's other officers.

He grew up in the small city of Kingman, riding the bus to school and raising chickens and goats on the family's 40 acres. He also tagged along with his dad, a retired welder, as he volunteered to teach police and firefighters how to best deal with people with disabilities, or assembled information packets for parents of newborns with disabilities.

Clinton got to know community leaders who eventually became elected officials, and he went with his dad to the state Capitol in Phoenix for meetings about disability issues.

When Clinton's sister was old enough to vote for the first time, he felt the excitement in the household. He was 15 at the time, but it seemed only logical to him that he, too, would do the same one day.

Clinton Gode (center) dances while his best friend, William Kawa (right) sings karaoke at The Spot.  Dancing along with Clinton is Lake Havasu City resident Monte Sandlin.  Clinton, who only works part-time, wants a full-time job, he has worked since he was 18 - wiping down tables in the cafeteria at the hospital and then bagging groceries.  "I just want to work," Clinton said.  "I am voting for Barack Obama because he says more jobs," Clinton said.

As when he expected to be part of the high school's varsity soccer team. (He earned a letter jacket as manager.)

As when he expected to graduate with his class, although students with disabilities may stay in school until age 22. (He earned a "Certificate of Completion" instead of a diploma.)

"He was insistent that a whole lot more education wasn't going to do him much good. He was a worker," Art Gode says.

So Clinton went to work. His first job was wiping down tables in the cafeteria at the hospital where his mom works; then he worked bagging groceries at the Kingman Safeway store.
And though his parents had thought Clinton would always live with them, he -- like most young adults -- wanted to live on his own, or as close to it as possible. He moved into a group home for adults with disabilities, a spot that was close to his job and friends, where there was a staff to help him.

For Clinton, then, voting was about more than a ballot. It would mean he was a participant in his community, that his voice mattered, just like everyone else's.

Clinton Gode introduces himself to Arizona Center for Disability Law Candidate Forum moderator Larry Clausen, while Arizona State Senate candidate Dr. Kelli Ward (left front) talks with Lester Galst.

"I should have a say," he said.

It would take some time, but he would get it.

A bill to satisfy all
Clinton was still in middle school when the effort to establish voting rights for people like him really got under way.

In 2000, state voters approved several changes to the Arizona Constitution. One of those would remove the exclusion from voting for people who had a guardian because of a disability, said Peri Jude Radecic, executive director of the Arizona Center for Disability Law. Such an exclusion was common in early state constitutions because of the belief that some disabilities could render a person's judgment unsound.

In Arizona, a person with a guardian because of a mental or physical disability is in legal terms considered an "incapacitated person." He or she cannot marry, get a driver's license, buy property, use a credit card or take out a loan.

In 2003, Radecic says, lawmakers passed a bill to allow limited guardianships, which would give people some oversight and assistance without having to give up full control.
But then in 2004 and again in 2005, bills to allow people to vote even with disabilities and full guardianship were stalled in the House by Rep. Eddie Farnsworth, R-Gilbert, after being passed by the state Senate.

Farnsworth worried that people who were legally incapacitated could easily be influenced by their caregivers. He also was concerned about protecting those who do not have the level of ability Clinton does.

"It's very easy to meet someone like Clinton and say, 'We have to give this right to everyone under guardianship.' The emotion takes over. You want to help them," Farnsworth says.

So the challenge was to find a way to ensure that a person who otherwise can't manage his or her affairs has the capacity to make an individual choice in order to vote. Advocates from the Arizona Center for Disability Law, The ARC of Arizona and the Office of the Arizona Secretary of State met with Farnsworth, and together, they figured out how to write a bill to satisfy all.
Farnsworth sponsored the legislation himself, and Clinton became the official spokesman for House Bill 2377. He met with lawmakers in their offices and earnestly explained his stance.
"I told them that I wanted the right to vote," Clinton says. "They listened to me."

The bill passed in the Senate, 29-0, on April 3. And when House members voted two days later, Clinton sat in the chair of the speaker of the House and banged the gavel to start the meeting. The bill passed again, 58-1.

"That made me feel very happy!" Clinton said.

Signed by Gov. Jan Brewer on April 10, the law permits a judge to determine, by clear and convincing evidence, that a person with a disability has sufficient understanding to exercise their right to vote.

The right to vote

The law went into effect on Aug. 1, and on Aug. 9, Clinton -- in a freshly ironed button-down shirt -- filed in with his parents and attorney to see Mohave County Superior Court Judge Lee Jantzen.

For half an hour, Jantzen asked Clinton questions, some specific and some general, and listened as Clinton explained who he wanted to vote for and how he reached his decision.
"The judge and me, we talked about politics," Clinton says. "I told him, 'I want every person to have the right to vote. There are people who don't care about politics, but I do care.' "
Jantzen says he wasn't concerned about how Clinton voted, but how much he understood about the process and whether the decision was his own.

"Clearly, he was making independent decisions, and he wasn't doing this just for giggles. This was something that he thought seriously about," Jantzen says.

"In the end, it's not about who you are voting for. It's about having the right."

When the judge ruled, giving Clinton the right to vote, he looked at his parents, tears in his eyes, and punched both fists into the air: "Yes!"

"Quite honestly," Clinton's dad says, "there were tears in everybody's eyes."

Judge Jantzen admits he was moved: "I don't get to do very many good things as a judge.
"That one was very rewarding."

His own beliefs

Clinton carefully slides a voter-registration card out of his wallet and hands it across the red, white and blue tablecloth printed with the word "Vote" on his kitchen table.

"I am very, very proud of that," he says.

His parents have just arrived, having made the 90-minute drive from their house to Lake Havasu City, where Clinton now lives in a studio apartment at New Horizons, a non-profit agency that provides services to people with disabilities.

A brown leather recliner sits in front of a big TV hooked up to a video-game system. To the left of a framed picture of a red sports car, he's pinned up a picture from a magazine of a blonde in a white bikini.

"Did you watch the president debate on TV last week?" his mom asks from the kitchen as she hunts for Ziploc bags.

Clinton pulls open a drawer -- there they are -- and answers, "Yes, I did."

"Did it put you to sleep?" his dad asks, chuckling.

"No, no," Clinton says. "I heard Barack Obama and Mitt Romney butt heads a lot."

As it often is with fathers and sons, Clinton and his dad don't share the same political beliefs.
"I am my own person," Clinton says proudly, putting an arm around his dad's waist.

Art nods: "He will let you know what he thinks. When he gets hold of an idea, he's like a bulldog. He doesn't let go."

Janet stays out of it. A nurse and director of the emergency room at Kingman Regional Medical Center, her issue is health care. She and Clinton's sister, Cassy, texted back and forth during the debates.

Who is Clinton's dad voting for? "Not the same guy you are, that's for sure," Art tells his son, chuckling again.

Clinton plans to vote for President Barack Obama.

"I watch candidates on TV, and I heard Barack Obama say about health care and education and jobs," he says.

Clinton also agrees with Obama that it is time to end the war in Afghanistan: "We need those guys to come back home."

Clinton is among the many who have felt the impact of this tough economy. A year and a half ago, budget cuts forced his Kingman group home to close.

"I lost my home," Clinton says. "That shouldn't happen to anybody."

He moved here, where he has friends -- including a girlfriend -- and plenty to do. Today he has plans to go bowling, followed by a cooking class, and then out again for karaoke.

There are staff members here at all times, and someone comes in every day for a few hours to take Clinton to the grocery store and help with meal planning. He cleans his apartment and does his laundry.

"I love it here," Clinton says.

But Clinton wishes he could find a job, a real one, full time, maybe as a mechanic, or a chef's assistant. Really, he'll take anything.

"I just want to work," Clinton says. "Most of all, I am a hands-on kind of guy."

When he moved here, Clinton had to leave his Safeway job. The only work he's found is cleaning up a parking lot after a swap meet on Mondays.

"I am voting for Barack Obama because he says more jobs," Clinton says again.
His dad smiles and says, "I hope you are right, Clint. I hope you are right."

Talking politics

Later that day, Clinton and his friends, all adults with disabilities at New Horizons, are just back from bowling at Havasu Lanes, where Clinton scored a 77 -- not his highest game ever but not bad, he says.

They are gathered in the communal kitchen on the grounds, which include several studio apartments and three group homes, to make pizza.

Everyone does something -- open the can of olives, find the tin foil -- to help. Clinton slices green bell peppers with even strokes of a big knife, just like his dad taught him.

He would like to have his own cooking show one day. He throws his arms wide and says it would be called "Clinton's Homemade Cooking."

"I like it," says Jimmy Slonina, who is leaning on the counter and watching.

"Think we have enough pepperoni?" asks Robert Peterson, a staff member overseeing the cooking venture.

"Definitely," Clinton says as he spreads red sauce on the individual-size pizza crusts with the back side of a ladle.

"Put some more sauce on that one," Peterson tells Clinton, pointing.

"You've got it, Chef!" Clinton says.

Clinton doesn't talk politics with his friends unless someone else brings it up, and he never asks who someone is voting for.

"Your vote is private," Clinton says. But he is happy to talk about his choice, or listen to someone else talk about theirs if they choose.

The talk turns to a candidate forum on disability issues being held at New Horizons the next day, sponsored by the same groups that pushed for the new voting-rights law.

Clinton's best friend, William Kawa, already knows what he is going to ask: "Are you willing to support a bill to help people like me get dental and vision insurance?" He adds, "Because I need to get my teeth cleaned and my eyes checked."

Dental and vision services for disabled adults with state health care were cut in 2009.

"That is a very good question, Will," Clinton tells him, throwing one arm around his shoulders.

Asking tough questions

At the candidate forum the next morning, every seat is taken, wheelchair users in the front row, staff and caregivers standing in the back.

"Look at that spark," says Radecic of the Arizona Center for Disabilities Law as she watches Clinton make his way through the room, shaking hands and posing for pictures as if he were running for office himself.

"It takes a heart like Clinton's to make a positive plea. Now he's opened this door for so many more people to vote," Radecic says.

Kelli Ward, who is running for state Senate, and Sonny Borrelli, a candidate for the House, both Republicans, sit at a table at the front of the room.

New Horizons CEO Terry Delia talks about the new law and how it came about: "Thanks to our own Clinton Gode."

Clinton stands, holds his arms wide and bobs his head, acknowledging the applause.

This forum is an opportunity for clients to ask questions and think about the issues that impact them, a life skill like cooking or computer class, Delia says. Of 35 clients, Delia says, one is a regular voter.

A person's disability does not determine what he or she is capable of, Delia says.

"Can I step up? I have really big questions for them," Clinton says. Really, it is more of a statement: "We need our dental care. We need our budget cuts minimized. I know you have your side, but I want to open the front door to everyone to get dental care and vision care."
And then more questions come, and they are not easy to answer, or hear.

The state budget for adults and children with developmental disabilities was cut 10 percent in 2009 and another 5 percent in 2011, Delia explains in a whisper. Many in this room have lost dental and vision coverage or have been forced out of job programs or classes.

In the front row, Roxanne Harshman, who has Down syndrome, leans to her left to read from a piece of paper in Kayla Brumet's lap. Brumet uses a wheelchair.

"This is for Kayla," Harshman says, and she explains that because of budget cuts, Brumet can't afford a communication device to talk to friends and family. Brumet nods to confirm.

A man speaks up who only has $20 left from his Social Security after paying room and board. It is enough for one soda every day, his only pleasure.

Clinton raises his hand again: "We need to find jobs to get money. We want to contribute. We do not want to sit around and do nothing."

"That's right!" says Jeff Crouse, who uses a wheelchair. He leads the applause.

Afterward, Mike Ward shakes Clinton's hand: "Great job, man." Clinton knows Mike and Kelli Ward well. They are both doctors, and Mike Ward works with Clinton's mother.

"You've got a future career in politics," he tells Clinton.

Clinton circles back through the room to find Borrelli. Clinton wants someone to sponsor a bill to provide state funding for Special Olympics, an idea he wants to run by Borrelli.

"I want to work with you, and you and me to sit down and work together," Clinton tells him.
Borrelli, a former city councilman, is interested. He says they should come up with a plan.
"I thought the forum was awesome," Clinton says. "They listened to what we had to say."
Empowered by that, Clinton says next he will invite Obama to visit him at New Horizons. He'll introduce the president to his friends, and he can see for himself what it is like for them.

Clinton believes the president will listen too.

"Oh, he's going to listen. If not," he says, raising his forefinger, "I'm going to say, 'Barack Obama, you need to hear me.'

"I am a voter."

Read more:

Be gentle

Saturday, October 27, 2012

New national medical registry for Down Syndrome

National Institutes of Health Establishes First National Patient Registry for Individuals with Down Syndrome

Read more here:

Global Down Syndrome Foundation support key to registry and increased focus on Down syndrome research
 — The first national Down syndrome patient registry to be housed at the Eunice Kennedy Shriver National Institute of Child Health and Human Development was spearheaded by the Global Down Syndrome Foundation with support from many organizations, including those on the National Institutes of Health (NIH) Down Syndrome Consortium.
The national registry will collect much needed medical information from people with Down syndrome, and connect people with Down syndrome and their families with scientists engaging in research that is of interest to those people and their families. The registry will be used to identify critical health trends, the most effective treatments and clinical trials for potential therapies.
The National Institutes of Health has awarded a $300,000 contract to PatientCrossroads to jump-start and operate the registry through September 2013. People with Down syndrome or their families will be able to enter and update contact information and health history in an online, secure, confidential database. Participants can choose which information they would like to display, receive reminders about their own medical care and compare their medical information to that of other registrants confidentially and anonymously.
Those who give permission may be contacted by authorized clinicians and researchers to see whether they are interested in joining a research study.
“This is so important to get even a baseline on health issues associated with Down syndrome,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “Clearly other conditions and diseases have registries and biobanks, and our community deserves the same. The advantage of being late to the table is that we have put lots of best-practice protections in place to benefit people with Down syndrome and their families. Clearly if implemented and supported appropriately, this will be a huge game-changer regarding health outcomes for our children and adults with Down syndrome.”
In 2010 the NICHD and Global Down Syndrome Foundation co-sponsored the first Down Syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne T. Maddox, deputy director of the NICHD, which is funding the registry. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”
“Down syndrome is complex,” Dr. Maddox said. “A wide array of scientific expertise is required to address all its aspects in a comprehensive manner.”
“We’re grateful to those who provided us with the advice that allowed us to establish a national registry,” Dr. Maddox continued. “We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online.”
The plan for the registry evolved from the 2010 NICHD-Global Down Syndrome Foundation conference and is supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the 2007 NIH Down Syndrome Research Plan.
About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show -- the single-largest annual fundraiser benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at
About the National Institutes of Health (NIH)
NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

Read more here:

Be gentle.

Friday, October 26, 2012

A first for Stephen while he rocks his extra chromosome

An inspiring story about an inspiring young man named Stephen, just what I needed to start my Friday.  I hope you enjoy it too.

Stephen becomes first councillor in the UK with Down's syndrome

A man with Down's syndrome is believed to be the first person in the UK with the condition to become a parish councillor.

Cllr Stephen Green, 47, previously made the headlines for learning to read music and performing his first piano recital.

Last week he was elected as member of Nuthall Parish Council in Nottinghamshire after his predecessor, Councillor Paul Simpson, stepped down.Stephen Green has become a parish councillor for Nuthall (Picture: SWNS)

It was the second time Stephen, from Nutthall, had stood for election to the council after narrowly getting beaten in an election eight years ago.

But when no one else stood for the seat, Stephen was elected to the council.

He said: "I want to help other people in the community I've grown up and lived in all my life.

"I stood before at the election so I'm very pleased to be councillor now.

"There will be some challenges but I've got a good support network around me."

Stephen’s father, Grenville Green, added: "It's a big achievement for Stephen.

"I'm ecstatic. He lost his mum when he was 28. It's not been an easy ride.

"I get so much enjoyment out of his achievements. He was willing to fight this election."

He added: "I was a bit disappointed nobody put up, to be honest, because it would have proved a point.
"He's got a lot to offer Nuthall. He can teach people manners and how to behave in public."

Liz Silver, of the Nottinghamshire Disabled People's Movement, said: "It's great news, I hope he enjoys it.

"I think generally disabled people do have concerns about discrimination and stereotyping; it affects some people more than others."

Be gentle.

Thursday, October 25, 2012

There's that word again..............

We talked about it before.  End the use of the R-word.  I cringe every time I hear it.  Change the R-word to RESPECT.  Spread the word to end the use of the r-word.

If you have checked out the web site, they have some wonderful items for sale such as t-shirts and mugs.  I purchased a couple of t-shirts for my family.  I love wearing them.  They are a good quality shirt, the graphics are great, and I love the message on them.  I first saw these shirts at a Special Olympics event.  I just had to have one.

I was wearing one of my shirts the other day while I was grocery shopping.  At the checkout, the clerk saw my shirt.  She asked me about it.  I started into my regular "speech" about the R-Word.  She stopped me part way through. And began telling me her story of her son and his struggles through school.  One of the administrators hat the school had called her son retarded.  Her son was now twenty.  She was devastated.  It stayed with her.  I saw the hurt in her face.  Wasn't there a better way to discuss her son's struggles in school?  I think so........

So, I was interested to see that yesterday, the R-Word hit center stage in the media.  And a young Special Olympian took it upon himself to educate and advocate.  Continue on to read this inspiring young man's words.

Special Olympian with Down Syndrome shames Ann Coulter over calling Obama ‘retard’ 

The incendiary conservative pundit stood by her use of the slur Tuesday, but John Franklin Stephens challenged her to attend the Special Olympics and leave with an unchanged heart.


A Special Olympian with Down Syndrome castigated right-wing flamethrower Ann Coulter for calling President Obama a 'retard' after the final presidential debate.

A Special Olympics athlete with Down syndrome has shamed conservative pundit Ann Coulter in an open letter after she called President Obama a “retard” this week.
“Come on Ms. Coulter, you aren't dumb and you aren't shallow,” wrote John Franklin Stephens in a blog post. “So why are you continually using a word like the R-word as an insult?”
Stephens, 30, told Coulter that he has “struggled with the public's perception that an intellectual disability means that I am dumb and shallow.”
“I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.”
Coulter used the offensive term when commenting about the final presidential debate on Twitter.
“I highly approve of Romney's decision to be kind and gentle to the retard,” Coulter wrote Monday night.


John Franklin Stephens is a Special Olympics athlete.

Despite widespread outrage about the tweet, Coulter doubled down on her word choice on Tuesday.
“If he's ‘the smartest guy in the room’ it must be one retarded room,” she wrote about Obama.
In his open letter, Stephens wondered whether Coulter had used the word to suggest that President Obama was “bullied as a child by people like you” or that he “has to struggle to be thoughtful about everything he says.”
“After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me,” he wrote. “You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.”
“Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor,” he said.
Stephens invited Coulter to attend the Special Olympics, challenging her to “walk away with your heart unchanged.”
Coulter has not yet publicly responded to the open letter, which Stephens signed “a friend you haven’t made yet.”
The conservative commentator has a long history of using inflammatory and offensive language.
Her latest insensitive remark comes just weeks after she was criticized for joking that national “coming out” day would be followed by national “disown your son” day.

An Open Letter to Ann Coulter

John Franklin Stephens
The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.
Dear Ann Coulter,
Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.
I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.
Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.
Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.
Because, Ms. Coulter, that is who we are – and much, much more.
After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me.  You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.
I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics.  See if you can walk away with your heart unchanged.
A friend you haven’t made yet,
John Franklin Stephens
Global Messenger
Special Olympics Virginia
EDITOR’S NOTE: John has previously written powerful opinion pieces on the R-word.Read one here.

Be gentle.

Tuesday, October 23, 2012

Every parent's nightmare.

What a sad, scary nightmare........  This is not a story to make you smile with a happy ending. This is a parent's is a horrible, horrible incident that shattered a family.  I am sharing it so every parent makes sure as best to their ability that their child is always in a safe environment at all times.

Please say a prayer for these families.

Girl with Down syndrome found dead near Riverview school

RIVERVIEW — An 11-year-old girl with Down syndrome who slipped away from Rodgers Middle School even as adults watched her class was found dead Monday evening in a murky pond near the school.
Jennifer Caballero, who went by Jenny and whose mother held her in her arms at the bus stop every morning before school, walked away from her physical education class at midday Monday.
The class, which had about 20 children with special needs, was in the gym with about 140 other students, some of them playing basketball, said school district spokeswoman Linda Cobbe. Six teacher aides were assigned to watch Jenny's class.
Hillsborough County school superintendent MaryEllen Elia, who appeared at the Riverview school Monday evening, could not say how the child slipped away.
"There's no question that there are some things that have to be investigated," Elia said, promising the district would work with the Sheriff's Office to investigate.
The pond is about 100 yards from the gym and surrounded by a 4-foot fence. Though Jenny was a special needs child, she had the ability to climb a fence, said Sheriff David Gee.
"We don't know how long she was not under direct supervision," said Gee, who also appeared at the school. "We do not believe it was a very long time."
What they do know is the following:
About 12:30 p.m., shortly after Jenny's class went to the gym after lunch, employees realized she was missing after two students said they had seen her walk out a door.
Earlier, the girl had tried to go under the bleachers by herself, authorities said. Gee said supervisors said they were keeping an eye on her because they thought she was still trying to hide.
Officials put the school on lockdown. At dismissal time, school officials did a "controlled release," watching those coming and going to make sure Jenny did not leave with someone.
For five hours, the Sheriff's Office searched for Jenny, a 5-foot girl with dark pigtails.
Deputies first searched the interior of the school, checking every locker and closet. They used canine units on the ground and a helicopter in the air.
Two ponds are near the school. A dive team first searched the one in front of the school. About 5:15 p.m., it started on the second one, behind the school, according to sheriff's spokesman Larry McKinnon. About an hour later, the team discovered the body in 12 feet of water, about 20 feet from the shoreline.
Jenny becomes at least the fourth special-needs child in this area this year to have been found dead in a body of water despite nearby adult supervision.
In April, a 9-year-old girl with autism attending a birthday party in Riverview slipped away unnoticed and drowned in a pond. In June, a 4-year-old Holiday boy with autism slid out a window after his mother had put him to bed and ended up in a neighbor's pool. And in September, a 15-year-old with autism drowned in a Temple Terrace municipal pool while at a charter school party.
Rodgers Middle, which serves grades 6 to 8, has about 1,000 students. Jenny had attended the school for only about six weeks. She had transferred from another school within the district, though it was not clear Monday night which one, according to Cobbe.
Scores of neighbors turned up at the school Monday, offering their help. Many left in tears and questioned how a child, especially a disabled one, could disappear that fast.
Jenny's family has lived in the area nearly 20 years, said neighbor Heather Boffo. Jenny was the youngest of three daughters; their father works in the farming industry, and their mother stays at home. Neither speaks English, and Jenny's teen sister had to do most of the talking with deputies, said Boffo.
Through the Sheriff's Office, the family declined interviews.
Jenny was a sweet child, neighbors said, and on afternoons when the family had the windows open, neighbors could hear her laughing at cartoons on TV.
"You hear her screaming because she's just joyful," said Boffo.
She walked with a limp and was never far from her mother.
"She's always got a hold of her mama's hand," said neighbor Lorraine Boffo, Heather's mother.
Neighbors never knew the child to disappear. They questioned not only how she walked away from the school but also why deputies did not search the second pond until hours later.
"That should've been the first place they looked," said Heather Boffo.
McKinnon said the first thought was that the child was still inside the school, which is why deputies scoured the building. Jenny's mother walked the school grounds, too, hoping the sound of her voice might lure her.
The canine unit, which includes two bloodhounds, didn't pick up any scents as it circled the school. McKinnon said the ponds were dark and soupy, and the dive teams had to work slowly and methodically.
McKinnon added that no one knows yet when Jenny might have entered the water. "I don't think there's anyone who can say we should've done anything different," he said. "It's a tragedy."
Gee said as much when he choked up at his news conference Monday evening.
"I can't even begin to tell you how sad it is," he said.
Times researcher John Martin contributed to this report. Jessica Vander Velde can be reached at or (813) 226-3433.
[Last modified: Oct 23, 2012 12:05 AM]

Copyright 2012 Tampa Bay Times

Be gentle.