October 6, 2012

6/31 Myths about Adults with DS

Alex is 19 and entering the next phase of her life. She is an adult and will graduate from childhood medicine. We live in a small community, and although our Pediatrician is wonderful and has always kept up on the latest information about down syndrome she does not treat adults.  I know it is time to look for a doctor who understands adult down syndrome health and mental wellness issues, but I have not done anything about it yet. Why isn't she still a baby?

At the NADS Conference I attended a session given by Dr. Brian Chicoine, Medical Director of the Adult Down Syndrome Center at Advocate Lutheran General Hospital.  I have known Brian and his work for a long time, we were both NADS Board members and would meet at the Center. I have always admired the Center’s approach to medicine and particularly as it relates to people with down syndrome. Their mission statement says it all:

Enhancing the well-being of adolescents, 12 and older, and adults with Down syndrome using a team approach to provide comprehensive, holistic, community-based health care services

Just as we know our kids' behavioral and other challenges are not always health related, so it is with adults. His philosophy is not to treat an illness until he understands the why. This is exactly what I want for Alex, as she can make herself sick when something is not right in her world. And this is why I would like Alex to meet with doctors who work with a lot of folks with down syndrome.

Dr. Chicoine’s presentation was just the right amount of humor and fact. Who can’t laugh at his stories of dance parties and hugs? Or clients that surprise him with all types of kindness? This is the world we all know and love.

I learned a lot of great things at this presentation, all factual and some surprising, but what I found most amusing were seven myths about people with Down syndrome that are NOT true:
  • They are asexual
  • Are oversexed or uncontrollable
  • Have increased needs to touch and affection
  • Experience puberty later than their peers
  • Lack the capacity to form lasting relationships
  • Are sterile (I had thought men were – but there are 3 documented cases of men with down syndrome fathering babies)
  • Are not capable of maintaining a marriage

Most parents of children and adults with down syndrome will most likely say “duh” after reading these, but it is nice to know this came from a doctor who has worked with over 5,000 people with down syndrome.

Stay tuned
7/31 The Plan
8/31 South Korea

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