By Alex Bourquein
Living a life of independence is a goal for most adults. But for adults with Down syndrome, this can be difficult to achieve. Ben Erdman proves it is possible. Armed with his own special brand of humor, he lives independently, has held a job at the General Facilities and Provosts Office at Texas A&M University, participates in the Special Olympics every year, and never passes up the opportunity for a good dance party. After an eight-year hiatus from the board of the Down Syndrome Association of the Brazos Valley, he has resumed his position as a member and self-advocate, eager to continue raising awareness for Down syndrome.
The Down Syndrome Association of the Brazos Valley focuses on supporting families with children who have Down syndrome and helping every person who goes through their programs reach their highest potential. Their most important mission is creating a culture of acceptance for kids and adults with special needs and aiding the community in realizing they are more alike than different.
“We are creating hands-on opportunities to create real-life independence skills … that’s different for each person, but we want everyone who goes through our programs to reach the highest level of independence possible, whatever that means for them,” says DSABV Executive Director Melisa May.
The DSABV implements education and medical outreach programs, offers classes with a hands-on learning environment, and holds events that raise funds for the organization to make these programs and classes possible.
The education program focuses on offering direct support to participants with a one-to-one volunteer ratio. Students work at their own pace and volunteers work through problems step-by-step until the student understands what it means. People affected by Down syndrome often have problems with early speech difficulty, hearing loss, vision problems, and understanding abstract concepts.
“Some of us with Down syndrome that are in our 40s or 50s, we were born in a time where Down syndrome was not recognized. They kept putting us down and people thought we couldn’t go to school, but I proved them wrong,” says Erdman.
Erdman first got involved in the DSABV in 2003 through his wife’s parents. His wife Wendy also has Down syndrome. Together, they have spoken in conferences all over the country to bring awareness to Down syndrome as self-advocates. Erdman was also a keynote speaker for the opening of a new Down Syndrome Association in Spring Lake, Michigan.
The first time Erdman was on the board, he used it as an opportunity to communicate with friends and go on trips either to connect with fellow board members or spread awareness as a self-advocate. He is currently setting out to get more funding for the association and re-establish Fun for Adults with Down Syndrome, or FADS, an event that last took place in 2010.
For many parents of children with Down syndrome, the DSABV is the only service that bridges the gaps within the Texas education system. By providing children with additional therapy and offering education classes that cater to their individual abilities, the DSABV is an important resource for parents. Texas is the lowest-funded state for special needs, and the state legislature recently made cuts to Medicaid programs aimed towards therapists who do pediatric work, such as language pathologists, occupational therapists, and physical therapists.
Parents like Katy Foley, DSABV board secretary, are frustrated with the cuts made by the Texas legislature. “We still are able to get therapy twice a week, but whereas two years ago we got an hour, now we get 35 minutes,” she says. “One of the reasons the DSABV exists is to fill the gaps that the Medicaid cuts create.”
The DSABV believes in bridging the education gap for children with special needs while providing support for the parents of these extraordinary individuals through their programs. Funds are raised for their programs through their Down Syndrome Awareness Gala in March and their Buddy Walk in October, which will be at the Millican Reserve this year and will introduce a 5K option for participants. The DSABV also offers classes throughout the year to teach children, teens, and adults the necessary skills to become better self-advocates.
For more information on their programs and upcoming classes, visit www.dsabv.org.
A Ministry in Motion
In January, Suzanne’s Studio of Dance began offering free dance classes for children with special needs.
“I believe dance is such a gift, and it’s not just for certain people,” says Bethany Sleebos, co-owner of Suzanne’s Studio of Dance. “It’s a way to communicate without words and just enjoy getting to move.”
The classes are bi-weekly from 7:30 p.m. to 8 p.m., though the kids often arrive early to socialize with their peers. The class was formed from the understanding that families with special needs children are not often able to spend money on dance classes and as a way to give back to the community in a positive, impactful way.
For more information on these and other classes, visit www.suzannesdancestudio.com.