Brody's Buddy Ride raises money and awareness for Down syndrome

from WKTV News:
Brody Savicki is no stranger to the public eye. He's a local youngster with a lot of spirit. He also has Down Syndrome. Brody's Buddy Ride was created to raise money for local children with Down syndrome.

Savicki has made many appearances on NewsChannel 2 Newstalk during the Live at Five Newshour.

Saturday, some 75 bike riders set out on a 63-mile journey. The rode 63 miles because 63 is 21 times 3. It signifies Trisomy-21. The 21st chromosome has three copies in Down syndrome.

The riders departed from Clinton and returned to Clinton at the end of their ride.

Richard Majka coordinates the ride.

He said, "All the money is donated to children and families who have children with Down syndrome, to help with any medical problems and any needs they have."

Miss You Can Do It Pageant In Peoria

Arizona family travels to Michigan to help another family whose daughter is battling cancer

by Kim Russell from WXYZ ABC 7:
WARREN, Mich. (WXYZ) - A family from Arizona stopped in at a Warren home today to do yard work. The reason?  They know a little girl who lives there is fighting cancer.
Lexi Spencer, 11, has Down Syndrome and is halfway through an expected 30 month treatment for cancer.
The Murset Family wanted to make it easier for Christine and Jim Spencer to focus on their daughter, without having to worry about chores outside the house. Gregg Murset, his wife, and six children cleaned windows, weeded, trimmed trees, and did other chores today.
Gregg says he is trying to practice what he preaches. He runs a website, myjobchart.com .  It helps kids keep track of their chores and good deed through an app.
Kids can then earn an allowance, buy items, or donate money to charities.
"This is an outgrowth of what myjobchart is," said Murset. "It is teaching kids responsibility, work ethic, and giving back."
The Spencer family isn't the only family benefiting. The Mursets are traveling more than 6,000 miles this summer helping families.
"I don't think anybody has done this before," said Syndney Murset, 13. "It is fun to help people and see what their reactions are. "
For Lexi's parents seeing the get done, is a weight off their shoulders.
"I can't tell you how heartwarming it is for people to come from so far and do things we have wanted to do. I mean, our windows, they haven't been washed in 2 years," said Christine Spencer. 

At Special Olympics ceremony, Frankie Edgar finds a little perspective

by Ben Fowlkes from MMAJunkie.com:
Former UFC lightweight champ Frankie Edgar had personal reasons for attending the opening ceremony of the New Jersey Special Olympics Summer Games at The College of New Jersey in Ewing, N.J., at the end of May.
The 32-year-old Edgar has an aunt and a cousin with Down Syndrome, he said. His aunt competed in a version of the games as a younger woman, so he thought it’d be nice to show up and lend his support as a pro athlete from the Garden State.
What he didn’t expect was that he’d also get something out of it, something he could use now that he’s eight years into his pro career, and still trying to recapture the fire that made him a UFC champion once.
“Sports, it brings people together in so many different ways,” Edgar told MMAjunkie. “Just to see the smiles on the athletes’ faces as they’re walking out and getting cheered by the fans and their families, that was something really special.
“For me it is a job, something I have to do. I mean, I do enjoy it, but it does get a little tedious at times when you’re doing it every day, all day. To see people going and competing for the joy and for the sake of fun, it kind of reminds me that I get to do something for a living that people enjoy doing. Working out and participating in sports, it’s something people do for recreation, and for me it’s my life.”

McFadden hopes to bring home USG medal for brother

by Rick Gillespie from The Spectrum:
CEDAR CITY – The strident sounds of shotgun blasts filled the air Saturday as a diverse group of athletes competed in the Utah Summer Games trap shooting event.
Shooters ranging in age from 8 to 84 years gathered at the Cedar City trap club and spent the day wielding their weapons in search of a good time and a bit of USG glory.
Some were seasoned shooters, some were new to the sport, but among them stood one young participant who wasn’t there just to win a spot for himself on the podium.
Connor McFadden, 11, was out there competing for his older brother Johnny, who has Down Syndrome and is unable to shoot.
If Connor wins a medal, Johnny takes his spot on the podium and gets the experience of having the crowd cheering him on.
“I do it so he can feel good because he can’t do it by himself,” Connor said. “It makes me feel good that I can make someone happy.”
It’s a win-win situation for both Connor and Johnny, their father James McFadden said, and looking out for their brother is something Johnny’s siblings have always done.

Get to know: Nancy Gianni, founder of GiGi's Playhouse, Inc.

 

by Tarah Thorne from My Suburban Life:

South Barrington mother Nancy Gianni founded GiGi's Playhouse, Inc., a national Down syndrome awareness and achievement organization in Hoffman Estates in 2003, shortly after her daughter Giuliana (GiGi) was born with Down syndrome.

Gianni said that as a new mother who knew nothing about Down syndrome, she felt devastated and hopeless, until she realized that Giuliana was more like her two other children, Franco and Isabella, than different....

Gianni shared her story with Barrington Suburban Life reporter Tarah Thorne, explaining how greatly her non-profit organization has grown in just over a decade.

Thorne: Can you believe how far GiGi's has come?

No. We are truly blessed. I am constantly blown away by our growth.

Thorne: What was your goal starting GiGi's?

Educating my own community on the potential of individuals with Down syndrome. I also wanted people to have a place to celebrate and understand their diagnosis and take away some of the fear associated with Down syndrome.

Thorne: In what ways has GiGi's changed or stayed the same today?

We have now evolved into education and achievement centers, offering free one-on-one tutoring in literacy and math and 30 other educational and therapeutic programs. We also went from one location in 2003 to 22 in 2014, with several more communities working to open in their areas.

ABLE Act Would Allow Families to Prepare for the Future

by Laurel Joss from Autism Daily Newscast:
Caring for a loved one with autism is expensive. The expenses of raising a child with autism can include medical care, therapies, and respite care, but they do not end there. When children with autism grow up, they still have needs, including housing, utilities, and for many, around-the-clock supervision.
A recent survey by Autism Speaks of over 10,000 people from various socioeconomic and ethnic backgrounds in the United States found that only one out of four families were saving money for their child’s future needs. This statistic is frightening, considering the sheer numbers of children who will be ageing out of the school system in the next decade.
The Achieving A Better Life Experience Act (ABLE Act – S.313/H.R. 647) would allow families in the United States to open tax-free accounts similar to college savings accounts, health savings accounts, and individual retirement accounts in order to provide for their child’s future needs. Funds could be used for qualified expenses, including medical and dental care, education, housing, transportation, and job training programs. The ABLE Act also includes Medicaid fraud protection and a Medicaid pay-back provision when the beneficiary passes away.
Money saved through an ABLE account would not count against an individual’s eligibility for federal benefits, allowing individuals with disabilities to earn an income and save money towards their future without losing the benefits necessary for daily living.
Canada currently offers a similar program using Registered Disability Savings Plans (RDSP).

Parents with developmentally disabled children fight new regulations

by Anna Meiler from News Channel 2 WKTV Utica:

UTICA, N.Y. (WKTV) -- For many parents, their kids grow up, leave home and start their own lives. But, for parents with developmentally disabled children, their job never ends.

New regulations are forcing aging moms and dads to ask a painful question. Patricia Vilello wonders what will happen to her 38-year-old son with Down Syndrome if she isn't there to care for him.

"As a parent it causes a lot of sleepless nights," said Vilello.

Tommy used to be on a residential placement list through the ARC, but the state created a priority list six months ago that overrides it, which means Tommy could wait longer for a group home.

"The state does not want to open any more certified group homes. They're telling the parents to be creative, have your family and friends involved with taking care of them after we're gone. It's a 24/7 job. People aren't going to turn their lives upside down," said Villelo.

Cuts are also threatening structural workshops that Tommy attends three days a week at the ARC.

"It gives him a job, a place to go every day, mingle with peers, earn some money of his own. Everyone needs that to feel worthy," said Villelo.

Support for ABLE Act Continues to Grow

from PennsNews.com:
WASHINGTON, D.C. – Today, support continued to grow for the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647), introduced by U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC), bringing the total number of co-sponsors in the Senate to 60 members.  Introduced in the 113^th Congress in February, this bill would provide an improved quality of life for individuals with disabilities through tax-free savings accounts.

“This is a significant step forward for the ABLE Act and for the families of children with disabilities,” Senator Casey said. “Now that this bill has 60 cosponsors, I’m urging the Senate to take action on it in the new year. The fact that only 6 bills in all of Congress have this many cosponsors is a sign of the overwhelming support for this effort to make a major difference in the lives of these families.”

“The ABLE Act is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of college-bound kids,” Senator Burr said.  “I am very excited that we now have 60 Senators on board and can hopefully expect swift movement on the Senate floor to send this bill to the President.”

The legislation would amend Section 529 of the Internal Revenue Service Code to 1986 to allow use of tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

Parents of children with Down syndrome mentor other parents

by Karen Garloch from The Charlotte Observer and Centre Daily Times:
About two hours after Melissa Thomason gave birth to her son Welles, she and her husband learned their baby had the chromosomal abnormality known as Down syndrome.
"I remember sitting in the hospital room and having a lot of uncertainty about what that diagnosis meant for us, what it meant for him." She wished she could talk to someone who'd had the same experience.
So when the Down Syndrome Association of Greater Charlotte (N.C.) recruited parents to become mentors for new parents of babies with Down syndrome, Thomason was among the first to sign up. "I felt like I needed to be that person for someone else."Through the "First Call" program, Thomason, 32, of Harrisburg, N.C., has been matched with two other families who learned of their babies' Down syndrome through prenatal genetic testing.
Both couples had chosen to continue their pregnancies before they met Thomason, but she wouldn't have been surprised if they had considered abortion. If she had known in advance, Thomason said, "I would have had serious questions about whether I wanted to continue the pregnancy or not.
"Today though, Welles is 11 months old, and Thomason feels differently."

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

A Family adapts to new challenges of a child with Down Syndrome

by Melissa Constanzer from WJFW NBC 12:

Gleason - We all want perfect, healthy, and happy babies but sometimes things don't go as perfectly as planned. One Gleason woman and her family learned how to accept this.

"The second I looked at the picture, I knew he had Down Syndrome," said Shannon Staskiewicz.

Shannon Staskiewicz couldn't lose that thought when she first saw her new baby boy. "I was depressed, I was angry, I was grieving, you know, I expected to have this perfect little boy. And while he is perfect in his own way, it took a long time to make that connection. When I looked at him, all I saw was Down Syndrome, I didn't see Hunter," says Shannon.

She couldn't prepare for this. So she turned to other mothers online for help.

"I, you know, connected with a number of mom's on face book and they were so helpful. You know, just to say, that's normal, you know, it's normal to be sad, it's normal to be angry, but now you need to accept him for who he is," said Shannon.

But the family couldn't afford for the anger to last long. Hunter needed lots of care and attention.

"About twenty-five to forty percent of all Down Syndrome babies have some form of cardiac malformation," said Dr. Dennis McFadden, Shannon's OB/GYN.

Life-Changing Lessons for Parents in the UAE

by Dhanusha Gokulan from the Khaleej Times:
Ghada Omar, mother of a one-year-old with Down syndrome is extremely active on Facebook and other social networking websites. Omar’s statuses and updates revolve around her need to find information about her son Hassan’s condition. The boy was diagnosed with Down syndrome at birth.

Apart from looking for support groups online, Omar seeks to raise awareness and gather information about special needs kids through social media. “When Hassan was born I was completely ignorant. I did not think that something like this would happen to us, especially since our family has no history of Down syndrome. But discovering that my child has Down syndrome turned by life 360 degrees. It tests you as a parent on so many levels,” said Omar.

An Awe-Inspiring Showing of Support: another truth about Down syndrome walks

by Mark Leach from DownSyndromePrenatalTesting.com:

Tomorrow is my local organization’s annual charitable walk to kick off October being National Down Syndrome Awareness Month. I can’t wait.

Last week, as part of a blog hop, I posted “The Truth about Down Syndrome Walks.” In that post, the truth shared was that Down syndrome walks can be overwhelming. And, they indeed can be for the reasons I mentioned in the earlier post. But here’s another truth:

Down syndrome walks are an awe-inspiring showing of support.

We’re now less than 24 hours away from our annual walk, and I must admit that I am eager with anticipation for tomorrow. This is something I could not have fathomed before our daughter was born.

Before then, I had occasionally participated in other charitable walks. My firm sponsors many of them and I would often come out as a show of support for our firm team. One year, my participation went beyond the call of duty by my entry into a “Dude Looks Like a Lady” contest for the American Heart Association’s Walk. I believe photographic evidence is still out there in cyberspace.

Buddy House dream to become reality for Down syndrome organization

by Alyssa Harvey from The Daily News:

Down Syndrome of South Central Kentucky will see a vision become reality with the opening of its Buddy House for Down Syndrome.

”Five years ago, it was just a dream. It’s like it developed so quickly and came together. We can’t believe we’re starting out with such an incredible facility. The community donated money, time and resources,” said house director Jane Tichenor. “On our own, we couldn’t have done it. We had people who don’t have Down syndrome and just wanted to help. I am humbled and speechless at the generosity of people.”

An open house will be from 10 a.m. to 6 p.m. Thursday at 522 State St., with an official ribbon-cutting at 4 p.m. The BG Rockerz will perform during the ribbon-cutting. Official Buddy House T-shirts, including special shirts for infants and toddlers, will be sold for $10.

The date of the open house has significance – Thursday is World Down Syndrome Day, observed every March 21 to symbolize a third copy of the 21st chromosome in people with the genetic condition.

The house will have education and activities for infants, children and adults with Down syndrome and their families, as well as parents who have learned their child will have the genetic condition before birth.

”We want to reach out to people who just received a diagnosis, or gave birth to a child with Down syndrome. We have a welcome area where they can feel comfortable,” Tichenor said. “It’s a place where we can actually help our children, infants and adults, to support them in education and supplement what they learn in school to help them be more successful in life.”

The 3,000-square-foot building will house a Western Kentucky University-themed Big Red Room that will feature computers to help continue adult literacy and math and a Big Bright Room for school-aged children to help them develop speech, adaptive play and gross motor skills. There will be a lending library, meeting room, a kitchen to teach independent living skill and space for the BG Rockerz and ADAM group for younger children to dance.

”They learn so much. It even helps their speech,” Tichenor said. “They’re following directions and learning to have body control and balance.”

Because of its downtown location, Tichenor is “excited for opportunities of being out in the community.”

”We want everyone to know this will be a place to come gather and grow together and want to see all our loved ones with Down syndrome be all they can be and reach their full potential,” she said. “The more I meet these wonderful people, the more I love them.”

3/6/2013 Spread the Word to End the Word Day

Why Pledge?
The R-word is the word 'retard(ed)'. Why does it hurt? The R-word hurts because it is exclusive. It's offensive. It's derogatory.

Question: What is Spread the Word to End the Word?

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support.

How to discuss the R-word with others.

Act Now!
Pledge your support to eliminate the demeaning use of the r-word.

                    TAKE THE PLEDGE NOW

What Can You Do Today?

• Take the Pledge
• Forward this email to all your friends inviting them to Take the Pledge.
• Find an R-word event taking place near you and participate.
• Make a new friend by introducing yourself to someone with an intellectual disability. 
• Share your stories! We know you have stories and it's never been easier to share yours with the world! It's quick, easy and fun!
• Post photos & videos of your events, pledge banners & posters on our Facebook page.
• Follow @EndtheWord on Twitter and tweet with #Rword to join the conversation.
• Use our new "I Pledged" Facebook Cover Photo on your profile and ask your friends to pledge.
• Do you get why the R-word is so offensive? Take this online test from Love That Max.
• Share videos from our You Tube channel.
• Get involved with Special Olympics & Best Buddies.

In the News Check out some of the news highlights in the lead up to our big day of awareness. Share them with your social networks & friends!

• New York Times:  A Word Gone Wrong
• Huffington Post:  A Word Can Be a Matter of Life and Death
• KDVR Fox 31:  Actor John C. McGinely Talks R-word
• Huffington Post: Stopping The R-word Is Not Enough: Culture - Not Just Language - Must Change

Apple’s Accessibility Options Improve Lives

by Juli from Pad Gadget:
Apple is known for having some of the most robust and advanced accessibility options on its iDevices, allowing people with vision, motor, and hearing impairments to have full access to the iPad and the iPhone.
For example, with VoiceOver options people with vision impairments can have everything on the screen read aloud, which lets them access a range of different apps and features on iDevices.

One man, David Woodbridge, uses Apple’s accessibility options with great success. Woodbridge, who has been blind since he was a teenager, owns several different Apple devices, including iPads, iPhones, and MacBooks. Woodbridge was interviewed by the Sydney Morning Herald, where he detailed his life with Apple’s products.
VoiceOver is the main feature that allows Woodbridge to use his iDevices to run a successful business and to interact with his wife and children. Here’s what Woodbridge has to say about the feature:

“With VoiceOver I can support not only myself but also my boys and my wife. I press the Home button on the iPhone three times to turn VoiceOver on or off when I need to help them. For example, if my wife gets an SMS when she is driving I can call up VoiceOver on her iPhone to read the message to her and we can reply using Siri, which is one of the great iOS developments, getting better all the time.
Or, say an app on one of the iPads is not working properly. I use VoiceOver to shut the app down from App Switcher, relaunch it and triple-click to hand the iPad back with the app running as good as new.’’

He goes on to describe how he operates his Apple TV with VoiceOver and Apple’s Remote app, and explains that one of his favorite apps is Light Detector, which tells him if all of the lights in the house are off.
There are actually hundreds of apps designed for people with disabilities in the App Store, which is yet another reason why Apple has a leg up on the competition when it comes to accessibility.
Woodbridge is certainly not alone. Just a look at a few of his favorite apps, including the aforementioned Light Detector, Fleksy, a typing assistant, and the Looktel Money Reader, used for identifying money, reveal quite a few positive reviews from other folks with visual impairments.
Even I had the chance to explore Apple’s accessibility options when I had eye surgery two months ago. I couldn’t read my phone or my iPad for several days, but both devices were able to read to me, which was a total lifesaver.
Kudos to Apple for its continued dedication to accessibility – the company rarely gets enough recognition for all that it does to help disabled users – and kudos to Woodbridge, a man who makes the most out of the technology at his fingertips.

Living with Down Syndrome

By Christina Kristofic from Philly Burbs.com:
If you ask Kathryn Drenth to tell you about her Down syndrome, she’ll probably pull down her shirt and show you the scar from the open heart surgery she had when she was 6 months old. Her mother immediately will make her cover up and say, “Remember what we said about privacy.”Mariah Drenth-Cormick is trying to stop that demonstration now because she knows it won’t be long before that’s a social taboo.“I don’t think she thinks Down syndrome is any different from the scar on her chest,” Mariah told a class at Delaware Valley College recently.
Seven-year old Kathryn thinks she’s just like other kids her age.
And in some ways, she’s right.
Kathryn has the same energy and excitement for life that other kids her age do. She loves going to Simon Butler Elementary School, where she sits in a mainstream class and studies the same things other second-graders do.
Kathryn loves playing with her classmates at recess or after school. She loves spending time at home with her family, where she might watch cartoons, play games, lead a dance party, read to her baby dolls or fight with her younger brother.
But Kathryn and her classmates are only 7. And Kathryn’s classmates don’t have an extra chromosome that will slow their physical and mental development.
So how much longer will Kathryn be like most of the other kids? When will they outpace her?
Mariah Drenth-Cormick, one of the co-chairwomen of the Bucks County Down Syndrome Interest Group, knows her daughter will always be behind other kids.
But she doesn’t know by how much.
Mariah said the geneticist at The Children’s Hospital of Philadelphia who officially identified Kathryn’s condition a few days after she was born told her that Kathryn would not be able to do basic problem-solving tasks. The example the geneticist gave Mariah, which she gave the students at DelVal was: If someone told Kathryn to take the elevator to the third floor of a building and use it again to get back to the first floor, and a fire broke out somewhere in the building, Kathryn would not know to take the stairs and would insist on waiting for the elevator to get out. But Mariah knows that’s not true of her daughter.
“This girl can connive anything out of anyone and she has very good negotiating skills,” Mariah said.
Mariah is letting Kathryn show her — and others — what Down syndrome is.
As one of the co-chairs of the Bucks County Down Syndrome Interest Group, Mariah represents about 160 families of children with Down syndrome in Bucks County. She regularly takes Kathryn to meet women who are pregnant with or just gave birth to babies with Down syndrome, so the women can “see what a kid with Down syndrome looks like, what they can do and can’t do, how they bend in half.”
The visit to DelVal was the first time Mariah took Kathryn to speak to a college class.
“I just want to create the normalcy about it,” she said.
“Yes, it’s an extra chromosome. It’s not that scary. I think when people hear Down syndrome, especially older people, they have a preconceived notion that you put the child in an institution. We have special education, an IU, so many wonderful supports in place... Kathryn is only one grade-level behind. She can do everything on the playground except for the really high monkey bars. I can’t do the really high monkey bars. She’s just had such an awesome team and support that has helped her succeed.”
Kathryn crawled at 10 months and walked at 2 years old — later than most kids.
She started occupational therapy, physical therapy and speech therapy as a toddler, so she is more advanced than some other kids her age who have Down syndrome. Mariah said she knows other children in the area who have Down syndrome who have to go to another school that offers more support for them.
Kathryn’s condition means she has trouble reading and writing some words her mainstream classmates already have mastered. Her speech isn’t as clear as theirs. And because she has low muscle tone and control, her handwriting is bigger and sloppier.
So she gets extra help each day from therapists and learning support teachers.
The other kids in her mainstream class, who might know that Kathryn is different, don’t treat her like she is.
“This group of second-graders is one of the kindest groups I have ever met. There is this genuine respect the kids have for each other,” said Susan Zubak, Kathryn’s second-grade teacher. “And Kathryn is a bit of a celebrity at times in here. Kids will actually go out of their way to have the opportunity to read with Kathryn.”
Being part of a mainstream class is good for Kathryn’s growth and development, Zubak said, because it gives Kathryn the opportunity “to come in and see some higher-level thinking skills going on and model herself off what she sees going on in the classroom.”
The kids in the mainstream class learn from it, too. Rebekah Detweiler, Kathryn’s learning support teacher said, they can get to know Kathryn “and see that everyone’s different and there’s all different kinds of people.”
And then, Detweiler said, Kathryn and other children with development disabilities can “feel like they’re included with their community of learners.”
Kathryn’s family tries to treat her like a typical child her age and sets high standards for her. Mariah said, “She has boundaries. ‘Here’s what we expect of you in public. Don’t lift your skirt. Sit like a lady.’ “
Some of the other rules: Say “please” and “thank you,” don’t give other people attitude.
Kathryn follows the rules most of the time — as well as any 7-year old can. And her parents remind her of the rules regularly.
“We want her to be an independent person who eventually has a job,” Mariah said. “If we coddle her and do things for her, she’s never going to learn to do things for herself.”
Mariah said she and her family want to see Kathryn have her own home one day and “have any opportunity a typical person would.”
“If she wants to go to college, we’ll find a college that will meet her needs,” Mariah said. “I think she can be anything she wants to be.”
If you ask Kathryn what she wants to be when she grows up, she’ll give you a different answer each time. She told a reporter one day that she wanted to be a teacher. She told the DelVal class she wanted to be a princess.
She has typical 7-year old dreams.

Christina Kristofic: 215-345-3079;
email, ckristofic@phillyburbs.com;
Twitter, @CKristofic

hospital budget cuts could end independent living

by Brix Fowler from NBC 33 TV:
Kathy Edmonston's 30-year old son Zachry has Down syndrome. To help take care of him, she's getting assistance from both the federal and state governments. That has allowed Zach to live relatively independently. This means having an apartment and holding down two jobs. He even has time for a girlfriend.
"We've been able to, sort of, demonstrate independence and give him that opportunity to be that independent individual that he is. So, it's been a real success story," says Kathy Edmonston.
That success, however, is in danger for those living in Louisiana with similar situations due to a more than $850 million reduction in federal Medicaid assistance. This has meant laying off workers, streamlining services and closing down healthcare facilities.
"She's back on grade level with the rest of the kids her age, "Roselyn Davis, said. "When you think of a three to four year deficit, to be able to make that up inside of a year and a half, I think it's awesome.”
One of the hospitals closing is Southeast Medical Center. Davis' 16-year old daughter, Kayla, has been going there for more than a year and a half to treat her bipolar disorder. But with Southeast set to shut its doors at the end of the year to save Louisiana around $1.5 million. She’s afraid this decision will put her daughter's life is in danger.
"One of my greatest fears has been that one time that she's successful. That time when she doesn't wake up," says Davis.
On top of the massive reduction in federal Medicaid assistance more than $150 million is set to be slashed from the LSU Hospitals' budget. That means more than 1500 positions are set to be cut, including more than 340 at Earl k. Long hospital in Baton Rouge.
"When you change the system all at once in four weeks or six weeks that's quite draconian," Dr. Paul Perkowski, a Baton Rouge-based physician, explained.
Dr. Perkowski says the cuts are having an effect on more than just the care patients are receiving. It's also causing a brain-drain that could cause future doctors to leave the state and not come back.
"Those medical students and residents in training now no longer have a hospital to practice their craft, to train in their craft," Dr. Perkowski continued. "So, if those residents leave for other opportunities because their hospital is closing or experiencing budget trauma, then those residents are unlikely to practice medicine in Louisiana."
Roselyn hopes that doesn't happen. For now, she and Kayla are doing the best they can with seemingly ever-decreasing resources.
"Today is a little bit better than yesterday. It's a day by day process. Sometimes it's hour by hour. We don't make a lot of plans," she said. "We just take it as it goes."
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AHS reverses funding cut to Down syndrome clinic

from CBC News:

Alberta Health Services has reversed a decision that families believed would have closed a Down syndrome clinic at the Stollery Children's Hospital.

AHS planned to stop funding a nurse coordinator who provided care and arranged treatment for 180 children in Edmonton and northern Alberta.

On Thursday, AHS released a statement saying the position will be maintained.

"Care provided at the clinic will not change, and we are committed to ensuring community supports continue," the statement said, adding: "AHS is sorry for the distress this has caused for the families."

Shelley Wywal, whose five-year-old daughter Elora has Down syndrome, said she was excited and relieved about the decision.

"But also a little bit cautious, because our level of trust that this clinic will carry on as it has has kinda been broken," she said.

"We're concerned with what's going to happen with funding in the future and how as parents we can be assured that we don't need to be afraid."