Friday June 25th

Registration: 4pm at the Fairground Gates
Street Cruise: 6-7pm through old Town Auburn
“Super-Charged Chili Cook-Off”: 7-10pm

*Live music will be played all night.  Spectator fee is $3 at the gate and 12 and under are FREE.  Chili Kits (tasting cup, spoon and napkin) can be purchased for $5 per kit per person.

*Interested in being a Chili or Cornbread Cook? Please visit our website www.NDSCoalition.org or call Heather Haskin at 916-532-4773 for more details.

Saturday June 26th

Pancake Breakfast: 7-9am
Lunch: Starts 11am (Hot Dog Lunch to include chips and a drink)
Awards: 2pm

*Other days events to include, Raffle, Silent Auction, 50/50, Oldies band, awards, and so much more.

This is an event you don’t want to miss. For more registration information please click on the “Cruisin’ For Down Syndrome” box on our homepage at www.NDSCoalition.org or call Heather Haskin at 916-532-4773 or Jason Haskin at 916-749-0095. All proceeds from the show go to benefit the local efforts of the National Down Syndrome Coalition.  Hope to see you all there!

At first glance Katie Van Groningen might look like a 19-year-old girl but when she dives into a pool it’s as though she transforms into an aquatic animal.

Barely ever coming up for air, Van Groningen’s methodical strokes and determined spirit have earned her numerous Special Olympics medals, including the two gold medals she recently won at a regional competition in Roseville.

“It felt pretty special,” Van Groningen said of receiving gold medals.

And despite being diagnosed with Down syndrome shortly after birth, Van Groningen said she’s never  felt different from anyone else.

That is also, perhaps, one of the most interesting aspects of Van Groningen’s life. The Placer High School graduate has a genetic, chromosomal disorder that technically puts challenges in front of her. But for Van Groningen, the challenges are not getting another fourth-place finish – “I just don’t like that number,” she said – and working toward being an independent adult.

Lori Van Groningen, Katie’s mother, said she’s learned that as a parent of a daughter with Down syndrome, that those with mental and physical disabilities live lives similar to those who don’t have those disabilities.

“They’re more like us than not like us,” Lori Van Groningen said.

Katie Van Groningen is much like any 19-year-old girl. She has favorite activities such as swimming and bowling, her favorite movie is the popular “Twilight” and she was excited to celebrate her boyfriend’s birthday over the weekend.

Her mother says her worries for her daughter are similar to normal parental concern.

“I get a phone call that she’s locked out of the house and I think, ‘How can she be alone?’ but then that can happen to anybody,” Lori Van Groningen said. “It’s just the same worries as any parent. They’re just highlighted in certain areas.”

Over the next few weeks Katie Van Groningen will continue to train with her teammates for the Northern California Special Olympics summer games. Her coach, Sharon Scudero, said she’s waiting to see how many athletes she can take.

She said Katie Van Groningen is one of the few swimmers with Down syndrome on the team who is “legal” in all four swim strokes. Being legal means that a swimmer does not get disqualified. Special Olympic athletes are held to U.S. Swimming standards, Scudero explained.

“She has the best attitude ever,” Scudero said of Katie Van Groningen. “She never, ever complains and she’ll do anything you ask her and more.”

Katie Van Groningen’s determination to do well is apparent when she’s in the water. During practice as a friend and team member was jokingly splashing her, she motioned for them to stop as her coach was getting ready to time them on a lap.

However, out of the water, she’s quick to joke around with friends.

“I like them,” Katie Van Groningen said of her teammates. “They’re my friends.”

This summer she’ll take her first solo commercial airline ride to visit a friend in Colorado. She’ll take a class this year at Sierra College and she is learning life skills through a program at Placer County Office of Education.

She and her family are also looking into a special education higher education institution where students with special needs live on campus for two years and attend classes.

Lori Van Groningen said it will be hard to let go, but thinks independence for Katie Van Groningen will be good for everyone.

When asked what’s she learned from her daughter, Lori Van Groningen pondered a minute and then said she’s been more accepting of people and more sensitive to different situations.

“Life is just about the simple things,” Lori Van Groningen said. “There are far things worse than having Down syndrome.”

The Journal’s Jenifer Gee can be reached at jeniferg@goldcountrymedia.com or post a comment.

———-

Get to know: Katie Van Groningen

Special Olympian: Van Groningen has been training with the local Special Olympics swim team for several years. She has multiple medals, including two golds she won in freestyle relay and butterfly stroke races.

Legally swimming: Van Groningen is one of the only swimmers with Down syndrome on her team who can legally swim all four strokes in competition, which means she does not get disqualified.

Athletic interests: Van Groningen plays on a baseball team, learned to ski, and competes on the Special Olympics bowling team

Favorite movie: Twilight

She loves: Her Siamese cat, Trina

Age: 19

May 8, 2009 (CHICAGO) (WLS) — Everyone’s mother is special. But some go an extra mile to make significant changes for their children.

Northwest suburban Nancy Gianni is one of them. She is dedicated to making the world a better place for individuals with down syndrome.

Five-and-a-half years ago, Nancy Gianni created Gigi’s Playhouse in Hoffman Estates for children with down syndrome and their families. They have now five playhouses, and with Nancy’s commitment, they will have them all over the United States.

“I remember when we first opened, and our opening, no one really know, What is a down syndrome awareness center, what is it going to be?” said Nancy. “And I kind of thought it was just going to be me and my mom and, you know, no one else being there, and we had almost a thousand people at that opening.”

This was just the beginning of Gigi’s Playhouse. After giving birth to her daughter, Gigi, who has down syndrome, Nancy knew she had to make a difference for her daughter and others after receiving mixed messages from the medical community.

“We realized she was more like my other three kids than she was different, and that’s when I decided to show the world, you know, try to take away some of that fear associated with just the words ‘down syndrome.’ Take away some of that fear and show the tremendous potential that our kids have,” Nancy said.

Since opening the first Gigi’s Playhouse, it has grown tremendously with a variety of programs, ranging from literacy to social development and educational resources.

Nancy’s energy and support has made a difference for so many families, like Randi Gillespe and her 4 1/2-year-old daughter Madeline Grace.

“The people that are involved in Gigi’s Playhouse, from Nancy who is just a breath of fresh air, you know, I remember meeting her and it was like she was my best friend, she just gave me the biggest hug and saw my daughter Madeline and started playing with Made and gave her ooh’s and aahh’s, a lot of kisses, and then when I met Nancy again she remembered out names,” Randi said.

Peggy Delaney and her 16-month-old son Jack are benefitting from Nancy’s efforts.

“It’s made a huge difference in our life,” Peggy said, “made it joyful taking Jack out and just wanting to say, ‘Here’s my baby, isn’t he great?’ is the most exciting part of everyday. And I don’t know if I really would have celebrated that right when he was born if it wasn’t for Gigi’s Playhouse, it just made me very proud to have my little boy in my life.”

Nancy’s commitment to raise awareness about down syndrome has been recognized beyond families of children with down syndrome. She was voted one of 2008’s Chicagoans of the year by Chicago Magazine.

“They called and told me that I had been given this incredible honor,” said Nancy. “I screamed and jumped around for along time, and then they told me. I went to a luncheon where I was presented with an award and The Tribune Foundation gave me a thousand dollar donation to the playhouse and it was fantastic.”

As a mother, Nancy is just trying to give her daughter with down syndrome the best life possible in a positive environment.

“You know, they all thank me and I thank them more than they can ever, you know, they do more for me and so do the kids than anything,” Nancy said.

Gigi’s Playhouse has five locations, four in the Chicago area and one in Iowa. For more information go to www.gigisplayhouse.org

Friday, May 8, 2009

From Matangi Tonga:

DARWIN, Australia — World-record holder Tahnee Afuhaamango has got to be Tonga’s best-kept secret. The young Tongan-Australian swimming sensation not only became the overall World Female Champion at the Down Syndrome International Swimming Organisation Championships in Portugal last December, but over the last four years she has smashed world records and won several gold medals representing Tonga.

Known as the “Territory superfish” the talented 26-year-old swimmer from Darwin, who represented Australia for the first time in Portugal, won a total of seven gold medals, two-silver and set six World Records during the Down Syndrome International Swimming Organisation DSISO Championships.

What is most amazing is that Tahnee is Down syndrome and has a physical disability on her right arm but judging from her outstanding achievements this has made this young woman stronger and more determined to become the best in her field of sport.
Tahnee was born in Townsville, Queensland to a Tongan father Leipua Afuhaamango and an Australian mother Donna.

As well as representing Australia the swimming champ has also represented Tonga twice at two international championships. The first was at during the 3rd DSISO World Championship in Ireland in 2006 where she won gold medals in the 50m butterfly, 50m freestyle and 100m individual medley as well as setting new world records.

Tahnee represented Tonga again and performed her best at the Taiwan International Invitational in 2007 where she set a world record in 50m breast stroke for Tonga.

Tahnee’s other awards include being the winner of the 2006/07 Australian Northern Territory Achievers Award Sport Category and the 2007 Rotary Shine On Award for the most outstanding achievement by a person with disability.

She was also awarded a full scholarship at the Northern Territory Institute of Sport in January 2007, making her the first Down Syndrome elite athlete in Australia to receive a sport scholarship.

Tahnee’s current medal tally stands at 38 gold, 23 silver and 23 bronzes as of January 2009.

Friday June 26th

Registration: 4pm at the Fairground Gates
Street Cruise: 6-7pm through old Town Auburn
“Super-Charged Chili Cook-Off” Wine & Beer tasting: 7-10pm

*We will feature many local beer and wine vendors along with one of the hottest Swing bands around “Moonlight Swing” Big Band for dancing.

*Interested in being a Chili Cook, Wine or Beer Vendor? Please visit our website www.NDSCoalition.org or call Heather Haskin at 916-532-4773 for more details.

Saturday June 27th

Pancake Breakfast: 7-9am
Poker Walk: Starts 9am
Lunch: Starts 11am (Tri-Tip Sandwich or Hot Dog Lunch, to include chips and a drink)
Awards: 3pm

*Other days events to include, Raffle, Silent Auction, 50/50, Oldies band, awards, and so much more.

This is an event you don’t want to miss. For more registration information please click on the “Cruisin’ For Down Syndrome” box on our homepage at www.NDSCoalition.org or call Heather Haskin at 916-532-4773 or Jason Haskin at 916-768-8934. All proceeds from the show go to benefit the local efforts of the National Down Syndrome Coalition.  Hope to see you all there!

Please join us on Saturday May 23, 2009 at 6pm for the finest seafood around at Joe’s Crab Shack (1210 Front Street, Sacramento, CA 95814) in Old Town Sacramento.  After we finish our fine feast we can stroll through the many streets and businesses in Old Town and listen to the greatest Jazz sounds around during the Sacramento Jazz Festival.  If you are interested in viewing the menu for Joe’s please visit their site at www.JoesCrabShack.com or to learn more about the Sacramento Jazz Festival visit www.SacJazz.com (click on schedule and then May 23rd).

If interested in attending please RSVP by Wednesday, May 20th to this link  RSVP for an Event.  If you are in need of FREE childcare then please also let us know in advance.  Childcare will be provided at the Haskin Home in Roseville, CA.  Hope to see you all there!!!

Project Play @ Maidu Park

Brain Gym® is a system of quick and enjoyable physical activities that enhance whole brain functioning. It’s a lively and effective tool for children who have special needs. Parents can help their children to increase whole body coordination, attention and focus, writing abilities and more with Brain Gym.
The workshop will include movement experiences, a simple discussion about the brain, and adaptations for children who have disabilities.

Learning Objectives of the two hour workshop:

• Parents will demonstrate PACE: a quick system that prepares the child’s nervous system for optimal learning. Adaptations for children with disabilities will be discussed.
• Parents will understand the basic physiology of learning and identify how stress interferes with the child’s ability to learn.
• Parents will demonstrate specific Brain Gym movements.
• Parents will demonstrate various Brain Gym adaptations that may be used for children with special needs.

Presenter:
Suzy Campbell, OTR/L has worked with children for over 25 years in occupational therapy. She has a private practice in which she uses Brain Gym and developmental kinesiology with children who have challenges.

To learn more about Brain Gym you can visit there websites at www.braingym.com & www.braingym.org

This lecture will be held,

Friday, April 24th, 2009

from 7-9pm

at Abundant Life Fellowship Church

706 Atlantic Street, Roseville, CA 95678

*Please Note: This event is intended for Parents only and no childcare will be provided.

FEE: FREE

If interested in attending this lecture please,

RSVP by Thursday, April 23, 2009

RSVP for an Event

or contact us at Info@NDSCoalition.org or 916-532-4773

We will bring the meat.  Please sign up for one of the following dishes:

appetizer

salad

beans

chips

paper products

drinks

dessert

Please R.S.V.P.  with the dish you would like to bring at:   RSVP for an Event

2/9/2009

My life
Six words changed my entire life: “Down syndrome is your best case scenario.”

Those were the doctor’s words at my 20-week ultrasound. As we studied the monitor and watched the baby inside of me squirm and wiggle, the doctor pointed out the enlarged ventricles on the brain, the multiple defects in the formation of the heart, the lack of a nose bridge, the small limbs. Down syndrome was now our best-case scenario, because our first child’s condition was most likely “incompatible with life.”

An amniocentesis and three excruciatingly long days later, we received confirmation of the diagnosis. My prayers had been answered. Amidst the overwhelming fear and grief was relief and gratitude. It was only Down syndrome. It could have been so much worse.

It’s amazing how perspective changes everything.

Our daughter Lily was born four months later. The doctors had done their best to prepare us for the worst. We expected her to be premature. She would be tiny and blue because of her heart defects, unable to breath on her own, and would be taken immediately to the neonatal intensive care unit.

But Lily arrived two days before her due date. She weighed more than eight pounds and was bright pink. She not only breathed on her own, she screamed and cried like any other newborn. And after a swarm of specialists examined her, the nurse handed her to me. I held my child within minutes of her birth, looked into her eyes for the first time and told her “I love you and I’m so glad you’re here.” Under other circumstances I would have had hours to nuzzle my newborn. I only had a moment, but it was more than I ever expected.

Perspective.

This year Lily entered kindergarten. Over the past five years she has continued to amaze us, proving that with patience, determination and courage, she can achieve almost anything. But imagining her in a classroom with 24 other children, none of whom have a disability, brought only fear and grief. Would she make friends despite her social immaturity and unintelligible speech? Would she be avoided because she grinds her teeth? Would she be teased because of her odd behaviors? Would the teachers have patience with her processing delays? Would she be part of the class or just a child who sits to the side and observes the “typical” children as they play and learn? With each question came worry, weighing me down and disabling me.

I spent days consumed by fear and worry, realizing that kindergarten was the start of the rest of her life.

And then I received an e-mail from a friend whose daughter is 3 and also has Down syndrome. Unlike Lily, Ashley’s biggest challenges are not social or academic. She has battled leukemia for more than a year. Her mother wrote about the sadness she felt because Ashley’s hair was falling out again; she’d been so excited when it had finally grown back. Suddenly, Lily in kindergarten was no longer a source of worry. She wasn’t in bed at home too weak to go to school or play with friends. She only has Down syndrome. It could be so much worse.

Perspective.

As I dropped Lily off at school recently, I watched as she lined up with her class. One girl called out, “Hi Lily!” Other children yelled, “Lily! Lily’s here!” A few others rushed over and hugged her. All 24 children greeted my daughter as if she were their best friend.

I know I will continue to experience fear and grief throughout Lily’s life. I will feel sadness every time she faces an obstacle that only exists because she has Down syndrome. I will worry that the day will come when other children don’t race to greet her each morning. But I will also be forever grateful for each challenge that allows her to achieve great success, for each relationship that strengthens her character, for the opportunity to be her mother.

If I focus on the gratitude, I can get through the fear. After all, it’s just a matter of perspective.