If there were an award for “Best Place to Live If You Have a Child with Down Syndrome” I have to think Louisville, Kentucky would be in the running. I am proud to live in a community where there is a partnership between our local Down syndrome organization and the medical community. I am proud to live in the second state in the U.S. to pass a Down Syndrome Pro-Information Law. I am thankful that when we bought our house seven years ago, we happened to pick a home that is two and a half miles from the Down Syndrome of Louisville Lifelong Learning Center. And I am glad that they were our first call after we received Owen’s diagnosis.
The day John and I met with Diana we were still reeling from the initial shock of the test results. We had no idea what our future would look like. Visiting DSL for the first time was a scary thing because walking through those doors made it a bit more real. Diana answered all of our questions and told us about her personal connection with Down syndrome, her grandson. She bragged on the class of college graduates they were about to be celebrating. She gave us a tour of their beautiful early childhood development facility. By telling us all the things the children and adults were doing at the center, she was telling us everything our son would be able to do. What I remembered most about meeting her at DSL that first day is how much she smiled. We were not smiling. We were not there yet. Looking back, I realize she was excited for us. We were about to embark an incredible journey. We were lucky and we did not know it yet.
We know it now. We are lucky to be parents of a sweet little boy. Lucky to be part of the DS community. And lucky to be part of the DS community in Louisville. I am going to brag on my city a bit now.
Many communities have local support organizations. In Louisville, we are unique in that we have a campus that facilitates services for birth through adulthood with a staff that is dedicated to being DS experts. To our knowledge, our Lifelong Learning Center is the only of its kind in the country. I just looked at the calendar and there is an activity, most of the time two, almost every day of this month. Owen and I go to the Infant Class once a month and meet other families. These classes are led by Developmental Interventionists who I would best describe as Occupational Therapists that specialize in Down syndrome. We can ask them questions and they keep us up to date on the latest developmental tools and techniques. When Owen is a toddler, there is a class every week. This is in addition to Early Intervention services we receive, which were set up by, you guessed it, Down Syndrome of Louisville.
Throughout the year they do an education series with a different presentation every month focusing on different topics. Last month they brought in Dr. Michael Harpold, a researcher from the Lumind Foundation (formerly know as the Down Syndrome Research and Treatment Foundation) to share the latest breakthroughs in research regarding Down syndrome and information about clinical trials going on right now. Most people would have to attend the National Down Syndrome Congress Annual Convention to see something like this. DSL brought it to us. None of this we’ve had to pay for.
Speaking of the NDSC, three of the presentations at this year’s convention came from Louisville presenters. If you’ve been reading this and wondering if this is not relevant to you because you live in another city, there are things happening here that are making an an impact on a national and global scale. We are getting some things right here. Every community needs a Down Syndrome of Louisville.
In October we have the opportunity to support Down Syndrome of Louisville by participating in the Steps to Independence Walk. We have a team walking in Owen’s name. You can click here to donate, or better yet, join our team! We still need walkers (or runners)!
I can’t wait to walk on the morning October 4th, but there is something else I am really looking forward to that evening. Last year a movie was shot in Louisville called Produce. The movie stars David DeSanctis, a Louisville native and Ballard grad with Down syndrome. You can view the trailer below. The movie will release in theaters in 2015, but the evening of October 4th they are going have a special viewing of Produce at Louisville Slugger Field! Tickets are available here and $5 from every ticket will benefit local Down syndrome advocacy organizations.
Here’s another video featuring the cast of Produce and DSL members and staff highlighting an issue that needs some attention:
Down Syndrome of Louisville is an organization unlike anything else in the country, and they’ve had a huge impact on our lives, and on the way the world views people like Owen. It’s not in my nature to ask others to give, but DSL has given so much to us. If you feel compelled to donate to Team Owen, we would be thrilled, and if you are free on the 4th and want to spend a pretty fall day walking on the waterfront, Owen will have a hug waiting for you at the finish line!