Each year World Down Syndrome Day (WDSS) is celebrated on March 21. I mentioned this last week in one of my blogs. This is because scientifically Down syndrome is caused by a triple copy of the 21st chromosome so instead of the typical 46 chromosomes, a person with Down syndrome has 47. In recent years individuals and groups around the world have ramped up efforts to make this a day of celebrating the abilities of individuals with Down syndrome. In fact, it becomes almost a month of celebrating the lives of individuals with Down syndrome. A few years ago the Down Syndrome Guild of Greater Kansas City decided to start the “Commitment to Excellence” awards as a part of the WDSD celebration. Families are encouraged to nominate community members who provide dedicated and exemplary service to individuals with Down syndrome and their families. The DSG Prize Patrol then fans out about the Greater Kansas City area showering the recipients with gifts and kudos. It is a celebration. We like celebrations in the Down syndrome community! Each year we try to nominate someone.
This year we nominated our worship minister John Hollan and he was deservedly selected. For logistical reasons, everyone doesn’t get celebrated on WDSD day itself. So on Monday, March 25 we were able to surprise “Mr. John” (Rachel’s name for him) at the Blue Valley Baptist staff meeting. My official nomination form said this:
As a worship minister, John has sought to educate himself about individuals with Down syndrome and how to best meet their spiritual needs. This is best illustrated by a story of another mom of a daughter with Down syndrome who also attends our church. When her daughter decided to join youth choir this year, John went to the mom and wanted to know how he could best minister to her daughter. They told me that in in her daughter’s almost 15 years of life they had never had a minister ask how to meet their needs. John has helped us to find an appropriate voice teacher for Rachel. John treats Rachel just like the other kids and at the end of last choir year, John recognized Rachel for her hard work and tremendous progress in her singing. Rachel loves Mr. John and you can understand why.”
I didn’t have room on the nomination form to share how John works with our kids with Down syndrome at Christian Youth Theater. John is the m ake-up chairperson for the shows. Many individuals with Down syndrome have sensory issues and are sometimes fearful of the characters when they are in full make up. He is sensitive to these needs and works through them with staff and families. Rachel was so afraid of the Wicked Witch in Wizard of Oz. She was friends with the Rachel who was cast as the witch but still, she was so afraid she would shake when she saw her in full make up and heard her screech! John had an idea and it worked. Rachel joined the Wicked Witch in the makeup room and watched her being made up. John used the time to calm Rachel’s fears and all was fine.
When Rachel had pneumonia last fall and was in the hospital for 12 days, John visited several time. One visit Rachel’s respiratory therapist had been trying to get her to blow. Wasn’t going well. John stepped in and used some of his vocal training and his past work with Rachel in choir to work with her on her breathing exercises. It was genius and we all agreed that they might consider employing him. Just a few examples of why we believe John’s commitment was deserving of a celebration.
One more though. After viewing the Just Like You-Down Syndrome video John wrote a beautiful blog. I’ll not re-post the entire blog but this is an excerpt
“When Rachel joined student choirs, I started learning… I did a small bit of reading and web surfing, but mostly I just did what seemed right in including Rachel in the workings of our choir. I knew her parents have very high expectations for her in regards to effort and attitude, and I found that all I had to do was teach accordingly. It was a great year for BOTH of us, I believe, and now I find myself feeling a stronger responsibility not only to include her in the workings of our ministry, but also to find ways to help her follow Jesus more effectively. That is, after all, a pastoral responsibility.
It was a startling thought to me when I realized that churches on the whole aren’t always prepared to disciple those who have cognitive and physical challenges. My calling as one of the pastors at BVBC is to shepherd the people in my charge, and God has given me all kinds of wonderful people to lead… a couple of them happen to have Down syndrome. Granted, I’m FAR from being proficient in maneuvering their special educational needs, but I am learning ways to treat them as they want to be treated… just like I treat the other kids in my choir.
Recently Rachel had the opportunity to be included in a short 13-minute film called “Just Like You” that features three sets of real-life friends; in each pair one friend is a “typical” teen and the other has Down syndrome. The film GENUINELY warmed my heart and gave me hope for our future. I would encourage you to take a few minutes and watch it. It’s TOTALLY worth your time. Further, I would encourage you to step into opportunities you encounter that might involve people with Down syndrome. It’s not hard… just don’t shy away.
When we know better, we do better.”
Rachel was invited to say something about Mr. John and she said, “He is the best choir director ever. I love Mr. John.” She tells us this often. She loves and admires him. When we know better, we do better.
March 27, 2013
