Down Right Beautiful

Max McGinley
John C. McGinley's son (actor)

My son, Max, was born the day Princess Di died. Lauren, Max’s mother, and I didn’t know why everyone was in shock, but we knew why we were. During her pregnancy, Lauren didn’t have an amnio, but all the blood tests and sonograms came back okay. Everything was thumbs-up for us to have a little girl. When a little boy came out instead, that was fine. But 20 minutes later, the doctor told us that Max had Down syndrome. I didn’t know what Down syndrome was, not a clue. At first I just wanted to take on his problems, just give them to me instead of this little newborn. Then this crazy blame game started, and I wondered what I had done to cause this. There wasn’t any family history; it made no sense. Turns out, Down syndrome is the most common genetic disorder, occurring once in every 800 births, and no one really knows why it happens. It just does. Max avoided the heart issues and digestive problems that babies with Down syndrome are prone to, but the damned seizures took hold of him when he was 3. It’s not the Norman Rockwell relationship that you sign on for when becoming a parent. I began to gear down my expectations for Max. Here was a kid who already had special needs and challenges, and now he was being set back even more. It seemed horribly unfair. I came to understand that my son would do things on his own terms and at his own speed. I resigned myself to the fact that there wouldn’t be a lot of games of catch between us. But just because I gave up hoping for such things doesn’t mean I didn’t miss them. It was a huge forfeiture of desire and expectations. After about six months, Max’s seizures abated, and it took him a year to reacclimatize. Ever since, his progress has been amazing. He’s in the top percentile for growth for his age. He’s 10 years old, and he just started third grade at an inclusive program at a mainstream school. His math and reading abilities are fantastic. Outside of school, Max is always bouncing on the trampoline or swimming. He’s just this great big glorious kid. Last summer, Max and I often went to the beach in Malibu with our dogs. I’d bring a tennis ball for Max to throw to them, and one day he turned around and threw it right to me. I threw it back, he made a nice two-handed catch, and we kept at it. He didn’t make a big deal of it, but it caught me completely off guard. To play catch with my son was the defining moment of my life. That ball toss helped me understand that all the things I had surrendered hope of ever doing with my son were still attainable; they were just waiting for the right time. It’s the great comeback story. With that one perfect toss, my son had arrived at something I had left behind a long, long time ago.  John C. McGinley, 48, plays Dr. Perry Cox on Scrubs .

Full article:
 http://www.bestlifeonline.com/cms/publish/fatherhood/My_Partner_in_Patience.php

Johnny Stallings
Gene Stallings' son (coach)

Legendary football coach Gene Stallings made history as the youngest college coach at the helm of his alma mater, Texas A&M, and a perfect 12-0 season during his reign at the University of Alabama. But he says raising his son Johnny was his greatest reward.  “My life wouldn’t have been nearly as rich without Johnny, no question about it.” Johnny who was born with Down syndrome in 1962.  He outlived his doctors’ prediction that he wouldn’t live past the age of two because of heart problems, and when he died at 46 on Aug. 2, 2008 the accolades poured in.  “We’ve got more than 1,300 letters,” Stallings said. “Not notes, but letters telling us what a difference Johnny made in their lives, and thanking us for sharing Johnny.” “If the good Lord asked if he could give me a perfectly normal child or Johnny, I’d pick Johnny every time,” Stallings said. “No doubt about it.” He added that ignorance must account for the fact that 90 percent of women who are pre-natally diagnosed with carrying a child with Down syndrome choose to abort the child.  “They just don’t know what they are missing,” said Stallings, who now works on his farm in Powderly, Texas, and gives motivational speeches. “Johnny was 46 years old and didn’t know a bad word. He saw the good in everyone. He loved going to church on Sundays and Wednesdays, and he remembered everyone’s name.”  “When we got to church, there would be 20 women lined up to give him a hug.” Stallings wrote about the challenges and joys of raising Johnny and his remarkable coaching career in a book, “Another Season: A Coach’s Story of Raising an Exceptional Son.”  The book weaves a moving tale of how a fiercely competitive man with a high-powered job – and the players he coached – discovered humanity through Johnny that they would not otherwise have known. Johnny became a fixture in the stadiums where Stallings coached, which included the Dallas Cowboys and the St. Louis and Arizona Cardinals.  At the University of Alabama, the football equipment room is named in honor of Johnny. And a playground for the campus’s RISE program for disabled children where Johnny volunteered is named for him.

Full story:
 http://www.cnsnews.com/public/content/article.aspx?RsrcID=37761

Melissa Riggio
Steve Riggio's daughter (Barnes & Noble CEO)

I Have Down Syndrome—Know Me Before You Judge Me
A Lot Like You - Even though I have Down syndrome, my life is a lot like yours. I read books and watch TV. I listen to music with my friends. I’m on the swim team and in chorus at school. I think about the future, like who I’ll marry. And I get along with my sisters—except when they take my CDs without asking! Some of my classes are with typical kids, and some are with kids with learning disabilities. I have an aide who goes with me to my harder classes, like math and biology. She helps me take notes and gives me tips on how I should study for tests. It really helps, but I also challenge myself to do well. For instance, my goal was to be in a typical English class by 12th grade. That’s exactly what happened this year!  But sometimes it’s hard being with typical kids. For instance, I don’t drive, but a lot of kids in my school do. I don’t know if I’ll ever be able to, and that’s hard to accept. It’s true that I don’t learn some things as fast as other people. But that won’t stop me from trying. I just know that if I work really hard and be myself, I can do almost anything.
See Me - But I still have to remind myself all the time that it really is OK to just be myself. Sometimes all I see—all I think other people see—is the outside of me, not the inside. And I really want people to go in there and see what I’m all about. Maybe that’s why I write poetry—so people can find out who I really am. My poems are all about my feelings: when I hope, when I hurt. I’m not sure where the ideas come from—I just look them up in my head. It’s like I have this gut feeling that comes out of me and onto the paper.  I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you. (excerpt from her story published in National Geographic Kids)
Full article:
 http://kids.nationalgeographic.com/portal/site/Kids/menuitem.5b1c7b0f2785ed81b92c3010ca248a0c/?vgnextoid=864421ee85c9e010VgnVCM1000006b02a8c0RCRD&vgnextchannel=1c78edfab621d010VgnVCM1000006640a8c0RCRD
Melissa's website: http://www.riggio.net/

Melissa Riggio passed away on April 7, 2008 at the age of 20, during a battle with leukemia that took her away from us much too soon. Her writing introduced us to her hopes and dreams, as well as her love of her sisters, Laura and Christina. Her poems inspired performer Rachel Fuller to set them to music, with Pete Townshend of The Who producing. Melissa Riggio wrote a fine article for the National Geographic Kids magazine explaining what having friends, and having Down syndrome, meant in her life. Her words set the tone for the book, Chicken Soup for the Soul - Children with Special Needs. She was crowned Prom Queen at her high school, had a job she enjoyed, with aspirations to continue her education and become a counselor. She also continued working toward her dream of becoming a singer and performer. Melissa Riggio's spirit and strong, positive influence will continue beyond her twenty years in the world. Those of us who will never meet her in life will continue to benefit from that influence, her inspiration and accomplishments. I wish we could have seen who she would have become if her life had continued along with ours.
Full article: http://www.bellaonline.com/articles/art56423.asp