By Kristen Rhoads, Education Program Specialist, Office of Special Education Programs
October is Down Syndrome Awareness Month – a time to celebrate what makes individuals with Down syndrome wonderful.
According to the Centers for Disease Control and Prevention, Down syndrome occurs in 1 out of approximately every 700 births, with about 6000 babies born with Down syndrome in the United States each year. It is a lifelong, genetic disorder caused by a full or partial third copy of the 21st chromosome. Individuals with Down syndrome typically demonstrate profiles of relative strengths in visuospatial processing, social skills, and receptive language and needs for support in many areas including expressive language, motor, and cognitive skills. They may also have other health-related issues, including most commonly: hearing loss, ear infections, sleep apnea, eye diseases, and heart defects. With services, supports, and high expectations for performance, many individuals with Down syndrome earn high school diplomas, participate in post-secondary education, live independently, and become valuable contributors to society.
In celebration of Down Syndrome Awareness Month, we asked Dr. Stephen Camarata, Professor in the Department of Hearing and Speech Sciences at Vanderbilt University, for his thoughts on educating children with Down syndrome and potential directions for research. Dr. Camarata is the Co-Investigator for a NCSER-funded grant to evaluate the efficacy of interventions designed to produce speech accuracy and comprehensibility of elementary school students with Down syndrome.
What should families keep in mind when their child is initially diagnosed with Down syndrome?
In our Down Syndrome Clinic here at Vanderbilt University, there is an initial "burst" of medical activity when the family first learns that their child has Down syndrome. Families spend time making sure that the child's basic health needs are met and have a lot of appointments doing imaging, surgery, and so on. Then, the family settles in as the Down syndrome unfolds. The child's development –talking and communication, education, and behavior - all become immediate and long term foci.
Are there common misconceptions about individuals with Down syndrome?
A BIG problem is that there is a myth of a learning shelf life or a mythical critical period for learning. All too often this means that educators quit trying to teach academic skills to people with Down syndrome when they reach the age of 10 or 12. Tragically, this can mean pushing children through custodial care with minimal academic content instruction until they "age out" of educational support.
Another important consideration that I sometimes see is that people have low expectations and, therefore, underestimate the learning abilities of a child with Down syndrome. In a sense, they set the bar "too low” or do not provide meaningful learning opportunities. Therefore, educators may inadvertently prevent a child with Down syndrome from reaching his or her potential. Down syndrome is highly variable, so it is important to provide multiple types of opportunities and let the child show you how much and how fast he or she can learn.
Are there areas of research or practice that you think require more attention?
With regard to key research areas, my own recommendations are to:
- Examine further the benefits of inclusion – for both a child with Down syndrome and his or her peers
- Develop and evaluate interventions or strategies that improve communication, speech, language, social and literacy skills, especially reading comprehension.
- Investigate learning in adolescence and develop and evaluate interventions that optimize academic and transition outcomes in middle school and beyond.
- Examine strategies to improve parent and family support. All of the terrific things that we have learned for training parents of children with Autism Spectrum Disorders may also work for families that include a child with Down syndrome. More research in this area is needed.
Visit our website, for more information about the research that NCSER funds.
Questions? Comments? Please send them to IESResearch@ed.gov.
