Remembering Annette and the 2007 Indiana Buddy Walk

Today is the 6 month Anniversary of our friend Annette's death. In honor of Annette, I submitted an article for our DSI Buddy Walk Newsletter, as the request was to provide an article about what the Buddy Walk meant to our families. While I could have written about how I brought Nash to our first Buddy Walk in 2001 when he was 6 months old, and I was just overpowered with anxiety, fear and joy and all of the aforementioned emotions, I chose to write about one magical Buddy Walk; last year in October of 2007. My draft: Buddy Walk 2007 and Memories of Annette Our family consists of three, plus a few hundred or so, since the birth of our son Nash in February 2001 thanks to the members of the IDSF, now DSI family, and those we have met via internet support boards. When Nash was born, and his diagnosis of Trisomy 21 official, we bought books, cried a bunch, loved on our son, and went on-line. My support was my loving husband Jeff, our families, a box of tissues and a group of gals originally on a parentsplace.com Down syndrome board, which later evolved into the tri21online.com discussion group. On this board, I was able to somewhat covertly discuss my fears, dreams and issue-of-the-day, share my love of internet research and my findings to all those that will listen, make some friendships that still, to this day, feel stronger than genetic family ties. The strength of the bond among those of us with children with Down syndrome is inexplicable to those not officially members of our exclusive club; those with a family member with Down syndrome. The strength of this bond was evident at the 2007 Buddy Walk. Annette Lammer and her husband Tom became friends with Jeff and me via the internet in early 2001 when Annette and I met on-line. Their son Ryan also has Down syndrome and is Nash’s age, born within a week of each other. Our friendship grew as we shared triumphs and disappointments, and finally met each other in person. These meetings are known as “IRL’s” in the online communities, or “In Real Life” meetings. The IRL’s were held in various locals, and the last one with Annette was at our home in Indiana for the 2007 Buddy Walk. We had over 80 people attend the IRL at our house in Noblesville after the Buddy Walk from all over the country, including Annette and family from Canada. But I knew this was much more than an IRL. It was a gathering of friends for Annette who all share that special bond of having a child with Down syndrome, as we didn’t know how long we would be blessed with her friendship and presence here on earth. Annette was diagnosed with synovial sarcoma in February 2006, five years from when her son Ryan was born. She passed away on December 16, 2007, just two months after that wonderful gathering at the Buddy Walk. So you see, the Buddy Walk is a special event for many of us; a place to gather family, friends and those special in our lives. It’s for educators, therapists, friends and family to show their support for Down syndrome Awareness. It’s an event to celebrate, and for us that knew Annette, to remember. And we will be doing just that for the 2008 Buddy Walk in Indianapolis. Celebrating and remembering. We hope you all join us! Annette at the 2007 Buddy Walk- God Speed Annette, we miss you. Annette and family on the right at the end Please leave a link to your Buddy Walk or IRL experience in your response for us to enjoy, expecially if it pertains to our much loved, much missed Annette.

Another Couple with Down syndrome to Wed- Get it Down 31 for 21: Post 11

Bernadette and Josh to Wed Thursday, 10/11/07 Couple with Down syndrome prepare to wed They expect their love to transcend limitations By CLAUDIA PINTO Staff Writer Doctors referred to Gwenn Resha's baby as a "mongoloid idiot" and advised her to put the infant in a nursery and have another one real quick. "They said nursery, but they were meaning institution," Resha said. "Back then, there was no expectation that people with Down syndrome would do anything but sit and vegetate." Resha's daughter, Bernadette, has helped to debunk that once-widespread belief. The 28-year-old has graduated from high school, acted as a paid spokeswoman for Easter Seals and Special Olympics, appeared in the movie Gummo and become an accomplished artist whose paintings sell for hundreds of dollars. On Nov. 11, she will do something else that experts a generation ago would not have thought possible: she is getting married to a man who also has Down syndrome. Advocates say marriage is rare between two people with Down syndrome but becoming more common because of longer life spans made possible by medical advancements. Newer laws ensure their right to education and employment, which have made independence possible. No one tracks the number of such marriages across the country. "I don't know of any other couple with Down syndrome who have been married in Tennessee," said Sheila Moore, executive director of the Down Syndrome Association of Middle Tennessee. "This is very exciting for Bernadette and Josh. It's also very exciting for the Down syndrome community. It's gives us hope and excitement that individuals with Down syndrome are having more opportunities and living more normal lives than ever before." Bernadette Resha of Nashville and her fiancé, Josh Putman, of Mt. Juliet, seem unconcerned about being pioneers. They just want to be together. "I like Bernadette. I love her like a wife," said Putman, 25. "Every time I met her, her is a good person, a good athlete. And her is a good artist." Bernadette Resha responded to the kind words with a shy giggle and tenderly touched Putman's arm. "He is my very close friend, boyfriend," she said. "I like for him to support me and be a good husband." They had opportunities Advocates say that Bernadette Resha and Putman are part of the first generation of children with Down syndrome who have had opportunities to be educated and employed. Instead of living out their lives in an institution, they have been included in public schools. Their individualized education plans typically include employment training and instruction on how to live independently. "Prior to 1975, it was not mandated for children with Down syndrome to be educated," said Madeleine Will, vice president of public policy for the National Down Syndrome Association. "It's believed there were 1 million children with Down syndrome and other disabilities who weren't being educated." In the early 1990s, the Americans with Disabilities Act required that accommodations be made in the workplace when possible, and prohibited discrimination. As a result, "adults with Down syndrome are achieving more than ever before," Moore said. "They are graduating from high school. They are employed in our community." In addition, medical advances have dramatically increased the life expectancy of people with Down syndrome. Will said that in the 1980s, whites with Down syndrome typically didn't live to the age of 25. That compares with an average lifespan of 55 today. Down syndrome, caused by a chromosomal abnormality, comes with a host of medical conditions, including heart and digestive problems. "Now almost all of these things can be corrected," Moore said. While progress has been made, advocates say there are still many obstacles that people with Down syndrome face in getting married. Will said the primary problem is that people with Down syndrome who choose to get married will receive one-quarter less in Supplemental Security Income, a federal program that gives money to people with disabilities who have little or no income. "Sometimes they just move in together and don't get married because they can't afford it otherwise," Moore said. Putman and Bernadette Resha will receive $300 less each month in federal benefits. That means their parents will have to provide them with additional financial support. In addition to Bernadette Resha's income as an artist, Putman works part time bagging groceries at a Publix grocery store. It doesn't seem right to Bernadette's father, Louis Resha. "If you have a disability, you shouldn't be penalized for getting married," he said. Independence possible Putman was unaware of the symbolism, but he chose to propose to Bernadette on July 4: Independence Day. Once the two are married, they will move from their parents' homes and live independently for the first time in their lives in a Nashville apartment. Putman fondly remembers the day he asked Bernadette to marry him. It was in her parents' kitchen in the middle of a party. "I got my knee down. I said, 'I love you a lot.' I said, 'Bernadette, will you marry me?' " Putman recalled. "Bernadette said yes. Then Bernadette started crying. Then Bernadette's dad, Louis, started crying. That was a big happy moment." Putman and Bernadette Resha have been lifelong friends. They met at St. Bernard's preschool when Bernadette Resha was 5 and Putman was 2. But it wasn't until 1995, when Putman accompanied the family to the Special Olympics' World Gamesin Connecticut, that they "somehow saw each other in a different way," Gwenn Resha said. "I think their love for each other probably is more sincere than other people because their friendship just kept getting stronger and stronger," she said. They like to go out to eat, go to the movies, walk in the mall, spend time together — many of the same things other couples like to do. Like other couples, they are looking forward to getting married and spending their lives together. However, they aren't interested in having children. "No kids," Bernadette Resha said. "It's real hard to care (for) children. It's a big task." The two realize it will be hard enough to take care of each other. They are confident they can do it, though. They know how to clean the house, wash clothes, and do minor cooking. Their parents will regularly check in on them. "Our responsibility is, grow up. Be a young man and young lady," Putman said. "We together. It's nice together. Sometimes it's good and bad. We work it out." to view the video go HERE

Nash was chosen as one of five kids from the whole school to read today....

at the 9 week convocation celebrating the end of the year, and those that had reading skills with the most gains from the beginning of the year. While we are still working on our First Grade IEP, as we have issues with LRE percentages and categorization- 51 or 50, I know we have the support of the principal and staff and will get there.... but I digress. This post is about today, and Nash. Reading. To. The. School. We are so, so proud. He didn't read "What Am I" like the video here; he was quiet (hmmmm where did THAT come from?) and you couldn't hear him well, but he read his book, got great applause from the wonderful kids at his elementary, and we are so, so proud... did I already say how proud we are of our Nashtaters? Once I can figure out how to edit a 45 minute video of the entire program (we gave away 4 bikes for reading too!) I will post it.... I just have to say, again, how proud we are of our boy! And thank you again Mr. Harvey - our principal - for your philosophy of acknowledging and praising diversity in all children. And a shout out to Mrs. Minnich and Mrs. Tappy...the wonder team. I so hope we can continue the gains in First grade...

It's Always Something :)

Nash's elementary school had "Grandparents or Special Person Day" today, and Nash's Gaga (my mom) and Grandma (Jeff's Mom) both attended. Nash welcomed them with open announcement to the class, big hugs and then they settled down to a lesson about seeds and matching colors to seeds, along with writing what the seeds would soon become....Nash gave both grandmas a card with his pink Chicago tulip picture on it, along with his new school picture thanking them for coming to grandparents day. I just imagine my dad, Nash's Chuck Chuck, and how he would have loved this visit to Nash's school today. I know he watched from above...... Then my mom left and Jeff's mom went back to her speech pathology association conference (yes, my mother-in-law is a speech therapist! How lucky are we??) and Nash went on to his Goddard afternoon K class. I loved hearing about the day from my mom and Jeff's mom - I can't ever get enough feedback from any teacher, para, principal, or child that has any connection to my child during the day while I am away from him. As a matter of fact, I think a legislated mandated camera into my son's classroom with internet hook up to my work computer isn't an unreasonable request of the legislature, do you? (I thought those thoughts were supposed to wane after the 3-5 weaning period......sigh.) Anywho... Jeff picked Nash up from Goddard as he always does, and we (Jeff, Nash, Grandma and Me) went to PF Changs for dinner. Don't you love Lettuce Wraps! So we all meet up at PF Changs. I eat, we eat, and it's all a social whirlwind. Nash tells us he has to go to the bathroom, I take him knowing its an opportunity for social banter for him and that's why he has this urge to find the bathroom; So from the table to the bathroom, and while in the bathroom and while exiting the bathroom to our table.... "hi, what's your name" "Hi, I'm Nash" "I like your mustache" "Hi Mr. Douglas" (from Shaggy Dog...the movie) "like your shoes" "insert some line he has memorized from a movie here".....sigh Yes, I wanted him to be verbal, and yes, he is now six, very verbal and now all of a sudden I want him to be quiet! :) then we have another moment. A woman comes over to our table after we have finished eating. Nash is now in my lap as its about 7pm and he has been going nonstop for 12 hours. She says to Nash "we have a Tigger fan here"...I didn't follow until I saw that she pointed to Nash's striped orange shirt he had on, which also had a generic football player on it and said, "well we are big football fans". Then she said "you are just adorable"! to Nash. She is about 50, and I wonder if she is part of the speech pathology conference that my MIL is attending....in other words....my radar goes up as usually its someone that has a child with Ds or knows a child, or has some connection that comes up to us. I am sorting this info in my brain as she speaks... But she offers nothing and we say hi. Nash says hi. I say "Do you want to tell her your name"? Nash offers nothing...he is spent. She smiles and says that he has been so well behaved tonight, which lets us know she has been observing. PF Changs is not on the family friendly list...but it isn't a no no either. So I respond, yes it has been a good evening for behavior tonight! and leave it at that....she smiles, knowingly, and says Good Night Nash! And leaves..... it's always the hit and runs that make us wonder, and also make us thankful

Beyond the Diagnosis

WTHR Channel 13 Indianapolis is currently running a three part series featuring............Down syndrome! The beautiful and talented anchor Andrea Morehead (who is visibly pregnant now, and of the wonderful age of 44) is presenting this series titled "Beyond the Diagnosis". As it is explained on the Channel 13 website: In this three-part series, Andrea Morehead talks to families with children wtih Down syndrome about the challenges they face as they try to change people's perceptions. Beyond the Diagnosis - Part One - Meet Lilly Roush and her parents, Liz and Matt. They talk candidly about the prognosis at birth, the medical challenges along the way and how their unwavering love gives them hope that Lilly will achieve goals beyond their dreams. Beyond the Diagnosis - Part Two - In Part Two of Beyond the Diagnosis, Andrea Morehead brings you the story of LaDonna Baker, who in her mid-forties was told about the Down Syndrome prognosis in her third month of pregnancy. She speaks candidly about how she found out. Her son, Aaron, has faced medical challenges since he was born and is currently at Riley Hospital for Children. LaDonna says she wouldn't change a thing. Andrea also will explore the controversy surrounding genetic testing and counseling for all pregnant women, regardless of age. You'll also meet a woman who is a national spokesperson for Down Syndrome and offers hope for families. Beyond the Diagnosis - Part Three - Katie Cortelyou is breaking down barriers every day. As a person with Down Syndrome who works at a local hospital, she touches lives all the time and challenges people's perceptions about what people with Down syndrome people can accomplish. She also gives hope to parents of children with Down Syndrome by volunteering at a local clinic. (edited to person first language) Andrea and I have emailed and I provided the GIFTS information as well as the DADS, and IDSF. I told her congratulations on her pregnancy! But I didn't ask the real question I wanted to ask......so its wait and see.........

Happy World Down syndrome Day!

Celebrate! WORLD DOWN SYNDROME DAY – MARCH 21, 2007 March 21, 2007 is officially earmarked as the second World Down Syndrome Day (WDSD). The date — 3/21 — signifies the uniqueness of Down syndrome in the triplication (trisomy) of the21st chromosome and is used synonymously with Down syndrome. To celebrate this special occasion, the Indiana Down Syndrome Foundation will again host Wednesday, March 21, 2007 - 7pm Warren Performing Arts Center 9801 East 16th St., just east of Post Rd., just south of I-70 Free admission; free parking showcasing the talents of performers of all ages and abilities — including some individuals who have Down syndrome