October is Down Syndrome Awareness Month and is an opportunity to build awareness about this genetic trait that affects roughly 1 in every 691 births in the United States, and is present in every race, culture, gender and socioeconomic background. Though it is the most frequently occurring birth disorder in the U.S., there is little funding provided to address this disorder by the National Institutes of Health.
There are approximately 400,000 people in the U.S. with this genetic trait. The most common form of Down Syndrome is called Trisomy 21, where instead of the usual 46 chromosomes present in a typical cell, there exists 47 chromosomes in the cell of someone with Down Syndrome. This additional cell results in certain physical traits such as low muscle tone, small stature and an upward slant in the eye lid. In addition, this additional chromosome impacts the individual’s cognitive abilities resulting in a delayed response in speech, comprehension and other cognitive processing skills. All of these physical and cognitive traits vary with the individual. However, the majority of people have mild to moderate cognitive delays. (Source: www.ndss.org). As awareness and intervention has grown over the years about Down Syndrome, more and more people with this genetic trait are growing up to be independent and productive individuals.
Over the past several years, people with Down Syndrome have become increasingly integrated into society and the recognition of their abilities and accomplishments are ever widening. For example, in the late 1980s, ABC television network introduced a drama series called “Life Goes On” that examined the challenges and successes of raising a teenager, played by actor Chris Burke, who had Down Syndrome.
In 2000, Karen Gaffney at age 23 was the first person with Down Syndrome to swim the English Channel as part of a six-person relay team. She would later go on to swim the 9-mile distance across Lake Tahoe in 2007. Others include Hu Yizhou, an internationally acclaimed conductor; Sujeet Desai, a highly accomplished musician; and Laura Bruckman, a German dancer.
In addition, in the U.S. more and more young people with Down Syndrome are completing high school, many are going on to postsecondary schools and a handful have even earned graduate school degrees.
For many families in the U.S., National Down Syndrome Awareness Month is a time to build awareness and educate those who aren’t familiar with people with Down Syndrome and share how they enrich the lives of their families and those around them.
One such family resides in Windsor. Charlie and Lori Couch have four children, one of whom was born with Down Syndrome. Though surprised by the diagnosis, Charlie and Lori embraced Caleb and worked hard to raise him just like their other children.
The early years did require some additional intervention, including physical, occupational and speech therapy to aid in his development. Caleb learned quickly to master many of the physical skills that his siblings acquired naturally. These early intervention experiences had a significant impact on his development and success as a youngster.
Today Caleb is a very active 7-year-old. He enjoys going to school and interacting with his peers. He can read, write and can do simple math. He enjoys jumping on a trampoline, riding his scooter and playing games on his iPad.
Even with his successes there continue to be challenges though, particularly with communication. Caleb struggles to articulate words in a way that can be difficult to understand. These shortcomings can be hard for Caleb, his parents and teachers.
As a first-grade student at Tozer Primary School in Windsor, teachers have been an invaluable source of support for Caleb in assisting him further in developing an ability to speak more clearly, but also to become a better student.
His teachers at Tozer have worked to integrate Caleb into the classroom and adjusting his work so he can learn at a pace that reflects his abilities and skill levels. Math is his most difficult subject given the complexity of grasping number patterns and mathematical expressions.
Tozer Primary staff and teachers have been very supportive in helping Caleb and three other children at the school with Down Syndrome. Tozer’s Principal Shelly Prenger brought in a special educator, Patty McVay, from the Sie Center for Down Syndrome at The Children’s Hospital in Aurora to support teachers on how best to assist children with Down Syndrome in the classroom. In fact, Tozer Primary was the first school in Colorado that Patty McVay visited to assist in the Sie Center’s inaugural efforts to build educational opportunities and awareness of children with Down Syndrome. Now Patty coordinates with more than 200 elementary schools throughout the state to strengthen education opportunities and experiences for children with Down Syndrome.
So, if you happen to cross paths with Caleb or others with Down Syndrome, don’t be shy in saying hello. You might be surprised that people with Down Syndrome are more alike than different.
Lori Couch lives in Windsor with her husband, Charlie, and their four children.