Blog: What I have learned from persons with Down syndrome
About 25 years ago, Sheila Hebein, then Executive Director of the National Association for Down Syndrome (NADS), came to Advocate Lutheran General Hospital in Park Ridge, Ill. She asked the hospital president to develop a clinic for adults with Down syndrome. The parents in NADS were finding that their sons and daughters were getting good care as children, but not the same quality of care when they became adults.
Through a series of events, that request went through Dr. Ron Ferguson, the family medicine chairman at Lutheran General Hospital at the time, to me, the newest faculty member, but also the one with the most experience working with adults with intellectual disabilities. 25 years and more than 6,000 patients later, the Adult Down Syndrome Center is the largest Center specifically serving adolescents and adults with Down syndrome, and until the last few years, the only one providing primary care. And we keep growing and learning.
Around the time the Center was being developed, our 5-year-old daughter asked about it. I explained to her that people with Down syndrome have 47 chromosomes while she, and most people, have 46. Her response was, “What a jip!” In the eyes of a 5-year-old and her understanding of the blessing of abundance, 47 was clearly more and better. Many times since I have reflected on both the prophetic and insightful nature of her comment.
A few years before the Center opened, Robert Fulghum wrote “All I Really Need to Know I Learned in Kindergarten.” I have often thought that I should write a companion book, “All I Need to Know Can Be Learned from People with Down Syndrome.” In it, I would describe some of the many lessons that I have learned.
Our former social worker, Dennis McGuire, PhD, described “empathy radar” in people with Down syndrome. He told a story that a patient’s mother shared. While attending a parent-student-teacher conference one evening, the mom and son were listening to the teacher discuss the academic progress of the boy with Down syndrome. Suddenly, the boy stopped the conversation by asking the teacher, “How are you doing?”
Concerned that he didn’t understand the purpose of the meeting, his mom went to correct him but noticed the teacher started to cry. Mom was mortified, but the teacher quickly stopped her from redirecting her son. The teacher shared that her best friend from her home town had died the day before and she would be leaving for the funeral right after the conferences. She hadn’t told anyone because she thought it would make it more difficult to get through the evening. However, the boy with Down syndrome had clearly picked up on her feelings. The rest of the conference was spent discussing his empathy and sense of reading and being sensitive to others’ feelings. That is one of scores of similar stories. Empathy radar.
Being in touch with one’s own feelings is important, just as is being in touch with those of others. When I give a patient a compliment, such as, “I hear you are a good swimmer,” the most common response I hear is, “I know.” Not “thank you.” Not the common, “Oh it is nothing,” “No, I don’t have that talent,” or “That is not true.” No false modesty. Just a realization of who they are and the talents they have. As a person, a teacher, a doctor, and a parent, I have asked myself many times, “How much do I accept and how much do I encourage or strive for improvement?” The joyful balance in the lives of so many of our patients is both admirable and a lesson.
While acceptance is a fine quality, striving is equally so. One of the joys of seeing patients with Down syndrome is asking them what activities they are doing and participating in. There always seems to be something new. A while back, a patient came into the office and reported he was scuba diving. Now perhaps I was projecting my own fears, but I hadn’t really thought of a person with Down syndrome doing that. A week later, another patient reported she was also scuba diving. Another day, another new activity, another hurdle jumped.
When I graduated from medical school in 1984, the life expectancy of people with Down syndrome was less than 30 years. No wonder I don’t recall anyone in medical school teaching us about adults with Down syndrome. They weren’t around in great numbers. Now the life expectancy is about 60 years. How many other physicians can say that the life expectancy of their patient population has doubled during their career?
The realization is that it is truly an incredible time in history to be serving people with Down syndrome and their families. An amazing time to be learning from them, to be exploring new vistas, and sharing what we have learned. Today, January 17th, 2017, we are celebrating the 25th anniversary of the Center’s opening. We are planning a number of events throughout the year. This has given me an opportunity to reflect on these past 25 years and on the future. The steep ascent in the life expectancy of people with Down syndrome is matched by the knowledge we are learning from and about them. What will the next 25 years bring? I know there is no need to think that far ahead. The next five or 10 will surely be inspiring.
About the Author
Dr. Brian Chicoine, is the Medical Director of the Adult Down Syndrome Center with Advocate Medical Group at Advocate Lutheran General Hospital in Park Ridge, Ill.