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Kick up ‘yer heels and join Elly’s Extras!

Posted by familysnows on 15 Aug 2009 | Tagged as: Down syndrome Awareness, Elly

This year the annual St. Paul Walk has a new name: Step Up For Down Syndrome (formerly Buddy Walk) and we want ya’ll to put on your boots and join us for a hootin’ good time!! The walk is September 20 and we are getting so very excited for another fun afternoon of music, food, and exercise. The walk will once again be held at Como Park-Midway Picnic Pavilion in St. Paul with check in beginning at 10:30 and the walk starting at noon.

This year we will have team bandanas and the Down syndrome association will once again have tee-shirts and lunches for everyone registered. The deadline for shirts has been placed early this year so I am asking your assistance in replying ASAP if you are planning to attend so that I can reserve a shirt for you. The following link will take you to my Google Spreadsheet where I am collecting the registration data: REGISTER HERE. I need to order the shirts next week (August 21).

We have also set up a First Giving page to offer further support for the Down Syndrome Association of MN. Their work is essential in providing awareness, advocacy, and support for individuals with Down syndrome and their families in Minnesota. Our page can be viewed HERE.

We hope to see you on September 20th and have you join us in showing support and advocacy for Elly and other individuals with Down syndrome. We will share more details as the walk approaches. Thank you for your support!!

Elly Got Glasses

Posted by familysnows on 23 Dec 2008 | Tagged as: Down syndrome Awareness, Elly, Uncategorized

Elly got glasses this fall. She does a great job of leaving them on in school. We are working on expanding that to other venues, but for now we are thrilled that she wears them in school, along with her hearing aid. She has focusing in her right eye when things get too close and the eye will sometimes cross. The opthamologist thinks that the glasses will be temporary and needed for about 3 years. We got her glasses from Specs 4 Us.

Glasses-for-Elly by you.

Another Beautiful Queen!

Posted by familysnows on 16 Oct 2008 | Tagged as: Down syndrome Awareness

I wouldn’t take my crown off either!!

Trig Palin has quite a following!

Posted by familysnows on 16 Oct 2008 | Tagged as: Down syndrome Awareness, Elly, Family, Uncategorized

Oct. 15: NBC’s Savannah Guthrie talks about Republican vice-presidential candidate Sarah Palin’s focus on Down syndrome and her relationship with her baby son Trig. See the video HERE !

Homecoming Queen and Prom King

Posted by familysnows on 30 Sep 2008 | Tagged as: Down syndrome Awareness

What do a Homecoming Queen and a Prom King have in common? Down syndrome.

October is Down Syndrome Awareness Month and anybody that visits my blog at all, knows that I love stories about individuals with Down syndrome. Here are a couple of stories that I have come across lately and they both have to deal with royalty! People with Down syndrome are very special!!

Beautiful Kelli Stein of Hankinson, ND was recently crowned Homecoming Queen. Her story of inclusion, love and support brought tears to my eyes. She is royal! Click HERE to see a video of her special night.

King Zach Wincent, of St. Charles, IL is now attending Elgin Community College, Elgin, IL. He is a prom king, college student, entrepreneur and part-time Target employee! His story was featured HERE on CNN.com.

To see the articles about both Kelli and Zach and to find additional links read on.

October is Down Syndrome Awareness Month

Posted by familysnows on 30 Sep 2008 | Tagged as: Down syndrome Awareness

MINNEAPOLIS, Sept 30, 2008 /PRNewswire-USNewswire via COMTEX/ –

Minnesota’s Fraser organization is national leader in serving families of children with Down syndrome.

Vice presidential candidate Sarah Palin’s family was recently thrust into the national spotlight. Like thousands of parents across the United States, Palin has a child with Down syndrome. Thanks to organizations like Fraser, Palin’s child is growing up in a society that will provide him many opportunities. But it wasn’t always that way.

Kennedy–Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

Posted by familysnows on 26 Sep 2008 | Tagged as: Down syndrome Awareness

New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns. Read more HERE , HERE, and HERE. I’m hoping and praying that this means that new parents will truly receive fair, unbiased, and current information about Down syndrome or any other condition and be connected with support services and networks that could offer assistance.

I can’t help it - more about Trig!

Posted by familysnows on 13 Sep 2008 | Tagged as: Down syndrome Awareness, Elly

I have purposefully avoided posting much about Sarah Palin on my blog to avoid politics. The purpose of this blog has been to share our family and to educate about Down syndrome. We want to show that we can have a child/sibling with Down syndrome and still lead somewhat normal lives, whatever that means! :) In the event that a parent new to the world of DS should stumble upon us we hope to show them that their lives will be filled with blessings beyond imagination. Their lives will be rich with potential and possibilities along with some challenges.

Sarah Palin’s nomination has caused quite a frenzy, but not without controversy. Even within the Down syndrome community there is much discussion about whether or not she is the right candidate on the right ticket. But political debates aside, she has given much attention to Down syndrome and disabilities in general - and that is awesome. I am excited to see articles in major newspapers and magazines across the country. I am hopeful as I see media catching on to people first language - Trig’s a baby who has Down syndrome, not a Down’s baby.

I have rejoiced since Trig’s arrival last April, I posted this within days of his birth. Why would I not continue to do so? Especially when these articles affirm that Trig’s life is valuable. Most children with Down syndrome will not receive the focus and attention that Trig will. Go Trig, go Elly!!!

WHAT TRIG CAN TEACH AMERICA

Rich Lowry, New York Post, September 9, 2008

PERHAPS nothing Sarah Palin said in her boffo address at the Republican Convention had as much resonance as her statement that “sometimes even the greatest joys bring challenge.”

That truism was redeemed from mere Hallmark-card sentimentality because everyone knew that Palin’s 17-year-old daughter, Bristol, is pregnant and that Palin herself gave birth to a boy, Trig, with Down syndrome in April. The joys in the Palin household lately have been particularly leavened with challenges.

Palin’s choice to give birth to Trig after she learned of his condition 13 weeks into her pregnancy endeared her to pro-lifers and contributed to the frenzied excitement among social conservatives about her selection. The national stage she’s now been given means her choice could have much wider significance and constitute an enormous symbolic leap ahead for children with Down syndrome and their parents.

As many as an estimated nine out of 10 children with Down syndrome are aborted in the womb, sought out by increasingly sophisticated prenatal tests and eliminated as too flawed, too burdensome, too different to live. This is the ugly eugenic underbelly of American life, even as we congratulate ourselves on our tolerance and diversity.

Parents of children with Down syndrome routinely encounter a “how could you?” disapproval. Former Washington Post reporter Patricia E. Bauer writes that strangers consider her daughter with Down syndrome as falling “into the category of avoidable human suffering. At best, a tragic mistake. At worst, a living embodiment of the pro-life movement. Less than human. A drain on society. That someone I love is regarded that way is unspeakably painful to me.”

Here comes Trig, who - via his mother, especially if she wins - will have a high-profile platform to expose the rest of us to his personhood and dignity. Palin always describes him, aptly, as “a perfectly beautiful baby boy.” After her speech, she held him on stage as she was joined by the rest of her family. Given how dated assumptions are about Down syndrome, he could do us much good growing up in the Naval Observatory.

It used to be that children with Down syndrome were institutionalized at birth. Without the love, care and education that any child needs, they lived stunted lives. Now, a generation of people with Down syndrome has been raised by families that love them. Advances in medical care and education mean they live full lives. Their capabilities differ - as is the case with everyone - but they graduate from high school, hold jobs and live on their own.

When Palin got the news about Trig, she was devastated and scared. She kept it to herself, until her husband got back from a business trip. They didn’t tell anyone else, including their other children. “Not knowing in my own heart if I was going to be ready to embrace a child with special needs,” she told People magazine, “I couldn’t talk about it.” It wasn’t until he was born that she says her fears washed away.

No one should trivialize the challenges Trig and the Palins will face. About 40 percent of children with Down syndrome are born with a heart defect. There will be the cruelty - intentional or not - of other children and the frustrations of struggling with tasks that come so much easier to others. And yet there will be the joy, as unalloyed and precious as any of us experience.

Palin said in an interview shortly after Trig was born: “I’m looking at him right now, and I see perfection. I keep thinking in our world, what is normal and what is perfect?” That is the subversive promise of children like Trig, undermining all our superficial assumptions about what’s truly important.

The Palins will have a humbling, heartbreaking and inspiring lesson in life’s priorities from Trig. Here’s hoping it’s one that, one way or the other, the rest of us share.

Breaking the Chromosome Barrier

Posted by familysnows on 11 Sep 2008 | Tagged as: Down syndrome Awareness, Elly

Trig’s Breakthrough

By Michael GersonWednesday, September 10, 2008; Page A15

In addition to Barack Obama making history as the first African American to be nominated for president and Sarah Palin taking her shotgun to the glass ceiling, there was a third civil rights barrier broken at the political conventions this year.

Trig Paxson Van Palin — pronounced by his mother “beautiful” and “perfect” and applauded at center stage of the Republican convention — smashed the chromosomal barrier. And it was all the more moving for the innocence and indifference of this 4-month-old civil rights leader.

It was not always this way. John F. Kennedy’s younger sister Rosemary, who was born in 1918, had a mental disability that was treated as a family secret. For decades Rosemary was hidden as a “childhood victim of spinal meningitis.” Joseph Kennedy subjected his daughter to a destructive lobotomy when she was 23. It was the remarkable Eunice Kennedy Shriver who talked openly of her sister’s condition in 1962 and went on to found the Special Olympics as a summer camp in her back yard — part of a great social movement of compassion and inclusion.

Trig’s moment in the spotlight is a milestone of that movement. But it comes at a paradoxical time. Unlike what is accorded African Americans and women, civil rights protections for people with Down syndrome have rapidly eroded over the past few decades. Of the cases of Down syndrome diagnosed by prenatal testing each year, about 90 percent are eliminated by abortion. Last year the American College of Obstetricians and Gynecologists recommended universal, early testing for Down syndrome — not just for older pregnant women. Some expect this increased screening to reduce the number of Down syndrome births to something far lower than the 5,500 we see today, perhaps to fewer than 1,000.

The wrenching diagnosis of 47 chromosomes must seem to parents like the end of a dream instead of the beginning of a life. But children born with Down syndrome — who learn slowly but love deeply — are generally not experienced by their parents as a curse but as a complex blessing. And when allowed to survive, men and women with an extra chromosome experience themselves as people with abilities, limits and rights. Yet when Down syndrome is detected through testing, many parents report that genetic counselors and physicians emphasize the difficulties of raising a child with a disability and urge abortion.

This is properly called eugenic abortion — the ending of “imperfect” lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of people who have disabilities. By eliminating less perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption — “Didn’t you get an amnio?” — and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependent are viewed as less valuable, and the weak must occasionally be culled.

The protest against these trends has come in interesting forms. Last year pro-choice Sen. Edward Kennedy joined with pro-life Sen. Sam Brownback to propose a bill that would have required medical professionals to tell expectant parents that genetic tests are sometimes inaccurate and to give them up-to-date information on the quality of life that people with Down syndrome can enjoy. The bill did not pass, but it was a principled gesture from Rosemary’s brother.

Join us for the 2008 Buddy Walk!

Posted by familysnows on 27 Aug 2008 | Tagged as: Down syndrome Awareness, Elly

Please join Elly’s Extra’s in a ‘gold medal’ walk for Down syndrome awareness and support. This will be the Eleventh Annual Buddy Walk held by the Down Syndrome Association of Minnesota. Last year over 5000 people participated in the St. Paul Buddy Walk.

Sunday September 21st - Midway Picnic, Como Park, St. Paul
Check in begins at 10:30, Walk starts at Noon

The Buddy Walk is the single most important source of financial support for the Down Syndrome Association of Minnesota. Due to your efforts, we have raised thousands of dollars to support Association activities – such as our Regional, grandparent and youth & adult conferences, financial support for our 23 parent groups, new and expectant parent packets, books, videos…..and more.

Please join us in making this year’s Walk another great success! Let us know how many from your family will be attending and how many shirts in each size your family needs by clicking on Elly’s picture. We can’t wait to see you there!

If the picture link doesn’t work, please register at: http://spreadsheets.google.com/viewform?key=pqbA59tQh2t0Gv4clqr7rTQ

Be still my “Achy Breaky Heart!”

Posted by familysnows on 26 Aug 2008 | Tagged as: Down syndrome Awareness

More on MN resident Amanda Wothe. I am so excited for her: Gold Medals, a Time magazine ad, AND meeting Billy Rae Cyrus!! How cool!

Wednesday, August 27, 2008 - The Frazee Forum - by Barbie Porter

Frazee Resident Overcomes Odds to Achieve Goals

Frazee resident Amanda Wothe met her favorite singer/actor Billy Ray Cyrus during WE Fest.

For Frazee resident Amanda Wothe, meeting Billy Ray Cyrus at WE Fest was almost as sweet as earning 39 medals in the Special Olympics and being featured in a Carlson Toyota ad in Time magazine.

Amanda has been a long time fan of Billy Ray, dating back to his “Achy Breaky Heart,” mullet haircut days.

When Amanda heard he was performing at WE Fest, she utilized an inside source to get tickets - her mom, Tammy, who works in the music festival’s corporate office.

“I was able to get an extra ticket, but most of the stars don’t meet the fans anymore,” Tammy explained. “So we weren’t expecting that.”

However, when word reached Billy Ray that an accomplished young woman would like meet him, he gladly obliged.

After pleasantries were exchanged, Billy Ray noticed Amanda was wearing a T-shirt from his TV sitcom, Hannah Montana, which stars his daughter Miley.

“He teased her about it,” Tammy recalled. “Then he gave her a hug, autographed a program and the two talked. He’s very personable and interacts well with his fans.”

Amanda admitted she felt tongue tied at times when speaking to Billy Ray, but it unraveled when she saw him perform.

“She was screaming the whole time,” her mom declared. “It was a really great day for everyone.”

Time magazine, photo shoots and the Special Olympics

In six years of competing in the Special Olympics, Amanda, who has Down syndrome, racked up 39 gold and silver medals, including five in national competition.

Amanda is also a scholar who graduated with honors.

Her accolades grabbed the attention of Carlson Toyota, Coon Rapids, which asked her to be in an ad published in the Aug. 25 edition of Time magazine.

“They called four days before graduation,” Tammy explained. “They said of all the athletes (in Special Olympics) she was the one they wanted for the ad.”

After rearranging a graduation party with classmates, Amanda and her mother zipped down to the Twin Cities for the ad’s photo shoot.

“They gave her outfits for the shoot, brought her to the beach and really treated her like a celebrity,” Tammy recalled. “They even gave her a radio controlled car and promised to give her a real one when she got her license.”

While the gifts and recognition were appreciated, Amanda learned the true weight of her winnings.

“I had to stand there holding my medals,” Amanda explained. “It felt like my arms were breaking.”

It’s not the first time Amanda performed under physical strain.

While competing at the Special Olympics in a hoop routine, Amanda sprained an ankle.

“When that happened, I went from being a coach back to being mom,” Tammy said. “I rushed to her side and she calmly asked me to step aside and let the medics do their job so she could get back to the competition.”

Trading in sneakers to be a public speaker

Like most athletes, Amanda carries her work ethic and dedication into areas outside of the physical realm.

She’s spoken on behalf of Special Olympics on numerous occasions, including at national competitions, award ceremonies and the Mall of America.

Pretty amazing, considering doctors told her she wouldn’t be able to talk.

Tammy recalled the day in Amanda’s childhood when her doctors suggested she learn sign language as a form of communication.

“She had fluid building up in her ears and that was impeding her speech abilities,” Tammy explained. “We had that drained and she hasn’t stopped talking since.”

However, Amanda did learn sign language, but as a second language, or as she called it, “a hobby.”

Amanda also plans to enter the workforce this September, another feat she was told she wouldn’t achieve.

“She’ll be doing a variety of things like sorting fishing tackle or placing inserts in the newspaper,” Tammy explained.

With every step and every word, Amanda showcases what can be achieved if one has the desire and will to overcome perception and obstacles.

“Since Amanda was born people have always tried to hold her back,” Tammy stated. “But she keeps rewriting the rules. We’re all very proud of her.”

Amanda Wothe (left) hugs her mom, Tammy, who is one of her main Special Olympic coaches. Her father, Jay, owns Wothe Bait, Frazee. Photo by Barbie Porter