Watch a Today Show segment featuring Self Advocate Karen Gaffney who recently swam Lake Tahoe to provide greater awareness and acceptance of individuals with Down syndrome.
Down Syndrome Opens Doors by Kara Childers
Blake Docking might have Down syndrome, but he’s taught Gordon Docking—his dad and the president and chief executive officer of St. Mary’s Hospital of Blue Springs—how to live and how to give.
“He opened the door to a world we didn’t even know existed,” Gordon said.
Humming to the University of Missouri Marching Band CD, Blake smiles at his dad and then runs upstairs to grab his newest Special Olympics medal. Blake likes to win, but it’s his love of participating that humbles Gordon and his wife Susan.
“His is the very outlook we should have,” Susan said, telling a recent Blake story that brings tears to her eyes.
It was a close soccer game, and Blake’s team was winning. In the last seconds, the other team scored, winning the game. The parents were horrified; they were mad. But not Blake. He ran right up to the kid who had scored the winning goal and gave him a high five.
“He’s our best teacher,” Susan said.
It’s been 19 years since the Dockings learned that their second child and first son was diagnosed with Down syndrome; 19 years since the life lessons began.
“When they told us, you feel like you’ve been run over by a truck,” said Gordon. “We were absolutely numb at that point.”
Gordon and Susan were confused. They were scared. All they knew was that their baby had a disorder they knew nothing about.
“We were hungry for information,” Gordon said. “And there wasn’t any available.”
A lack of resources in Kansas City left the Dockings desperate. But they were lucky. Another new mother in the Kansas City hospital had a 3-year-old with Down syndrome. Nurses scheduled a meeting between the Dockings and the woman, who sat down with Gordon and Susan and just talked. She talked about the bad days, the good days, the medical complications and the miracles. Most importantly, she showed the Dockings that they could survive and thrive with a Down syndrome child.
“Oh, my God, we can do this as a family,” Susan said they realized after talking to the woman.
“She helped us so much,” Gordon said. “But it didn’t seem fair that we got this opportunity, and other people didn’t.”
Inspired, Susan began gathering any information she could on Down syndrome. Just a few months after having Blake, Susan and Gordon were called in by Kansas City hospitals to counsel new parents. Using their experiences with Blake including open-heart surgery, the frequent ear infections and other medical problems¬ the Dockings helped other new parents understand that they were not alone. And that Down syndrome is not the end of the world.
“Down syndrome is a whole lot more normal than not normal,” Gordon said, smiling at Blake and a student award he just received.
The Dockings’ new-parent program gained momentum. When the Down Syndrome Guild of Kansas City organized, the Dockings were on the board, and the guild took over the program. That program still helps new parents today.
“It’s kind of personally satisfying that my son Blake’s legacy in Kansas City might be this program for new parents of children with Down syndrome,” Gordon said.
At St. Mary’s, an updated resource book is always available in the birthing unit. Whenever a new baby is born with Down syndrome, which happens maybe five to seven times a year, the book is given to the family. And DSG is called in to provide new parent mentors.
“That was probably the most helpful thing for us when Blake was born 19 years ago,” Gordon said.
With an Olathe East High School senior, Gordon and Susan don’t qualify as new parents anymore, but Gordon has taken his involvement with the Down syndrome community in Kansas City to a new level. As president of First Downs for Down Syndrome, Gordon heads up the fund-raising arm of DSG and the Down syndrome clinic at Children’s Mercy Hospital in Kansas City.
The fundraising organization works with the Kansas City Chiefs offensive line to raise hundreds of thousands of dollars a year for Down syndrome research and programming. For the last three years, First Downs has supported Children’s Mercy research linking Down syndrome in young children with pediatric leukemia.
“I know what they’re doing is cutting edge research... it’s the only place in the world where it’s going on,” Gordon said. “If they can identify what the link is, what causes the higher rate, then society and my family benefits from that breakthrough.
“It affects Blue Springs like it affects every community in the United States and beyond our borders. If they’re able to find these linkages... if they can come up with a way to prevent the children from Down syndrome from getting leukemia, then everybody benefits.”
Dr. Peter Rogan, who directs the research, has identified at least two and maybe three genes that can be connected with leukemia in children with Down syndrome.
“We’ve been very grateful for First Downs for supporting our research,” Rogan said. “To me, I’m grateful for an organization like First Downs because they’ve recognized that they need to make a commitment is longer than just one year... it allows us to keep working on this project year after year.
“It’s well-worth it when the day is over.”
“Well worth it” is how the Dockings feel about the struggles they experienced and still experience with Blake. The Dockings have come along way since the day Blake was born and they first realized he would be different. But for the Dockings, different is good.
“Maybe he is actually the one who is normal, and we have problems,” Gordon said.
Blake just grins and winks.
To reach Kara Childers send e-mail to firstname.lastname@example.org or call 816-350-6323.
Welcome to Holland by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
For more stories about families and Down syndrome, visit the Dad’s Corner.
Down Syndrome Guild of Greater Kansas City
10200 W. 75th Street, Suite 281
Shawnee Mission, KS 66204