Blog: What I have learned from persons with Down syndrome

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. Nearly 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 we keep learning.

Around the time the Center was being developed 25 years ago, our 5-year-old daughter asked about the Center. 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. In 2017, we will be celebrating the 25th anniversary of the Center. We are planning a number of events. 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.

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Comments

15 Comments

  1. Please do write your book! Many of us have much to learn from it.

  2. Thank you for your years of dedication to our people with Down Syndrome. Kim loved you, loved coming to visit, and then going out to lunch afterwards! We miss seeing you and all the wonderful ladies at the ADSC. Keep up the great work!

  3. Thanks for all your years of dedication to our people with Down Syndrome. We were so happy to find you in 1999. Kim loved you, loved coming to see you, and loved going to lunch afterward. You all made such a difference in her life. We miss seeing you and all the wonderful staff at ADSC. Keep up the good work!!

  4. Stormey Shepherd March 21, 2016 at 12:53 pm · Reply

    Great article Dr. Chicoine. I’m delighted to know about the wonderful work and achievements you and your staff do at the Adult Down Center. I know your patients appreciate you all.

    Thanks for sharing your insights. Keep up the good work!

  5. Nora Grajdura RN March 21, 2016 at 1:18 pm · Reply

    Dear Brian,
    It was my good fortune to have worked with you during your residency at LGH over 25 years ago. You were a great doctor then and now you have a wonderful legacy. What a rewarding career you have led.

  6. Thank you, Dr. Chicoine, for all you do for our special population.

  7. Betty Kearns Ulanski March 21, 2016 at 4:48 pm · Reply

    Thanks for all you’ve done over the years since we met long ago via GLADS, and for the reminder that there is always a lot to learn when you listen and care.

  8. Thank you for all you and the ADSC staff do for our children!

  9. Thank you for all you do Dr. Chicoine!

  10. BethAnn Beasley March 21, 2016 at 7:25 pm · Reply

    Thank you, Dr. Chicione, your team and Advocate Health Care for the wonderful work being done at the Adult Down’ Syndrome Center AND for publishing this article that we can share today! The Center and your team live the mission of taking care of our neighbors and treating all equally. SO proud to be part of this organization. Dr.Chicione, please write your book!

  11. Janet Colangelo March 21, 2016 at 11:02 pm · Reply

    Thank you, Dr. Chicoine, for this article and for all you do for our “kids”. I’m so glad we found you for Kevin. It’s wonderful for us to have a place like the Adult Down Syndrome Center. God bless!

  12. Dr. Chicoine, it has been a real pleasure to know you for these many years. Your example is an inspiration. Working with people to help them live fuller lives is a commendable vocation, and I think that we can learn a lot from your experiences.

  13. Virginia Augustinsky March 22, 2016 at 6:53 am · Reply

    Thank you. Just two simple, everyday words yet they are to convey the utmost feelings of gratitude for the quality of level of care you deliver, the gifted and talented staff you have assembled, and the genuine love, comfort, dedication, and commitment you show as you help guide our adults with Down Syndrome and their families through their lives that you have helped make longer and richer!
    May you, your staff, and families continue to be blessed with the time, strength, energy, and resources needed for the clinic’s ongoing success.
    And, by all means, write the book!

  14. Clarissa Deterding March 22, 2016 at 9:19 am · Reply

    Thank you for everything you and your team do! I really enjoyed working with you when I was at Neighborhood Services. May you continue to enrich people’s lives everyday!

  15. We are forever blessed to have Dr Chicoine in our area for our daughter, Christine, to have
    excellent medical care. Those not so close-by just need to read his books and articles like
    this one to gain insight into the care of your loved one.

About the Author

Dr. Brian Chicoine
Dr. Brian Chicoine

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.