Sunny skies, a beautiful mountain backdrop, and friends from all around the world converged on Denver in mid-July for the annual Down syndrome convention, hosted by the National Down Syndrome Congress. It’s a family reunion of sorts…The goal: Learn more. Meet new friends. Reunite with old friends. And DANCE!
The Down Syndrome Network Oregon awarded three scholarships to member families to attend the conference. Additionally, three board members attended with families, including DSNO founder Paula Schiedler, and Barb and Karen Gaffney, who gave the keynote speech on Friday night.
Karen raised the roof that night. She had hundreds in the room rise to their feet with a thunderous applause when she asked doctors to focus their research on helping individuals with Down syndrome, and bettering their lives – rather than terminating them. Karen’s words launched the conference into a positive, learning experience that no one will soon forget. The topics introduced ranged from: improving speech clarity, unraveling the IEP process with success, and financial planning for ongoing care of special needs individuals. Specialists including Brian Skotko, Libby Kumin, and Pat Winders shared their expertise in genetics such as prenatal diagnosis, the benefits of site reading, and tools for enhancing gross motor skills.
“I always come away with a great list of things that we can easily incorporate into our lives,” said DSNO scholarship recipient Sue Coleman, mother of Cy (4), and Rita (2 with DS), of St. Paul, Oregon. “I learned that our kiddos will learn better in combining audio, visual and motor skills.“Most of all, I love hearing from adults with Down syndrome about how they have graduated college, drive, get married, own homes and are part of the workforce.”
The conference is as much about learning what works as it is about meetings friends who are walking in your shoes. Everyone dons a smile all week long. I remember one of the gross motor sessions where Pat Winders introduced a walker that enabled a young four-year-old to run across the room. All 40 attendees stood from their seats and cheered the little boy’s newfound skill and speed. It was awesome.
Each year, the Conference is held in mid to late July. More than 50 sessions are scheduled during a 2-day period. Every conference offers fee-based childcare, making it reasonable for a family to attend. Concurrently running with the conference are a self-advocate conference for individuals with DS and a sibling conference full of fun activities, including sharing sessions and field trips to amusement parks and elsewhere.
The annual Down Syndrome Conference is coordinated by the National Down Syndrome Congress (NDSC). Next year’s conference will be July 11-13, 2014 in Indianapolis. If you were unable to attend this year’s conference, we have two ways for you to learn more:
- NDSC recently posted 55 sessions online. NDSC members can pay $45 for full-access; non-members pay $75. Here is the link: http://convention.ndsccenter.org/registration/
- Down Syndrome Network will host a Moms’ Coffee on September 6th, from 10:30am to 12:30am, with local attendees who will share their experience. Watch the DSNO website for more information.
DSNO hosted author George Estreich during the May Moms’ Coffee, with over 20 attendees.
At the event, the Corvallis father read excerpts from his re-released book The Shape of the Eye. It’s a personal memoir intertwined with facts about Down syndrome that he created to share his experience with Laura, his 12-year-old daughter born with Down syndrome.
Hearing his stories took me back to the days when I was afraid. The day our Lizzie was born.
On November 18, 2011, Elizabeth Piper popped out by c-section. A little butterball, everyone in the operation room said. She was small in length, but weighed 9 pounds and 8 ounces. I remember vividly her very round belly, her short legs that stayed scrunched up in their fetal position, and the bluish pigment of her skin. I thought something wasn’t quite right. And later, doctors diagnosed Lizzie with Down syndrome.
As the author shared his stories of Laura, parents in the room nodded at familiar experiences and asked him great questions about how writing the story helped him to accept and support his daughter, Laura.
Estreich also wrote an OpEd in the New York Times about the waiter in Texas who stood up for a child with Down Syndrome at his restaurant.
The May Moms’ Coffee was my first experience hosting. All members of DSNO are welcome to host Moms’ Coffees, which are open to family members of individuals with Down syndrome, as well as friends. Coffees are primarily held in the host’s home, and childcare is coordinated by the host with assistance from the DSNO Board of Directors. The purpose is to educate and support parents who have sons, grandsons and daughters or granddaughters with Down syndrome.
Upcoming coffees, not yet scheduled, include topics such as the National Down Syndrome Conference in Denver on July 20-21, family and estate planning, and Buddy Walk 2013. Check back here for dates and times to be announced.
Contributed by: Jennifer Dale