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Providing support & information about Downs Syndrome in the Essex & North East London area


To Hug Or Not To Hug

“I attended the funeral of a patient today.  I looked around at all the people in the church: his family, friends, people from where he lived for more than 30 years, people from the nursing home that was home for several months before he died, an incredibly supportive church community, and others.

A thought that crossed my mind was a discussion several years ago at a meeting attended by physicians and others who serve people with Down syndrome.  The participants were from all over the world.  During one part of the meeting, the attendees had the opportunity to present the case of a person with Down syndrome that they were caring for.  The audience asked questions, gave suggestions, etc.

During one presentation, a physician discussed a person with Down syndrome who was having some behavioral challenges.  An older physician (I vaguely remember that he was from somewhere in Europe) asked the presenter if the person with Down syndrome had people in his life who hugged him.

The physician who asked the question had a pretty thick accent and there were clearly some in the audience who questioned whether he understood the presentation.  I have to admit, that for a brief moment, I was one of those people. However, I quickly realized as did many others, that this older, wiser gentleman understood very well.  In fact, the presenter replied that he thought the person with Down syndrome probably didn’t have anyone in his life who hugged him.

As my mind came back, today, to the funeral service, I reflected on the deceased’s life.  He clearly had people in his life who hugged him. Many probably only figuratively but others clearly literally hugged him.  He really lived a good life. Now I don’t pretend that hugging was the sole driving force behind his wonderful life.  However, it certainly was an important piece to have people in his life that cared for him and made sure he knew it.

I also reflected on a recent conversation we had in the office.  It was around the issue of the staff at the Adult Down Syndrome Center hugging patients.  Patients reach out to us for support and understanding and many people with Down syndrome tend to be naturally physically affectionate.  After a tough blood draw, a discussion about health issues that may be challenging, or even just the struggle of coming to the office, many patients reach out to us for a hug.

Unfortunately, many of our patients are not good at deciphering who is appropriate to hug and who is not.  If I can hug the doctor, how come I can’t hug the butcher, a staff member of the opposite sex, or a stranger?  These are questions families and the staff (of group homes, day programs, schools, etc) are trying to help people with Down syndrome understand.

Unfortunately, in this day and age, the realistic concern about sexual abuse is high.  Equally unfortunate, as noted above, many people with Down syndrome have difficulty discriminating between appropriate and inappropriate people to hug.  Often the solution is that no one but family can hug the person.  For those with families, there is still a significant loss of support for the person with Down syndrome who best expresses and receives that support with a hug.  For those without families, there may be no hugs at all. When this topic is addressed, sometimes the audience will respond just as I did initially to the physician who asked the question about hugging—perhaps there is a miscommunication. Could this really be an important subject?  Why are we discussing this?

Emotional support of each other is clearly an important topic and certainly no less so for people with Down syndrome.  Unfortunately, we also must discuss sexual abuse because it does happen.  How do we find a healthy balance? I haven’t been able to find much research on the subject and have gotten bogged down in finding a way to study it in a meaningful way.  I certainly am curious as to how others have thought about this subject and what they have read.  Any thoughts? ‘

The above article is taken from the Facebook page of the Adult Down Syndrome Clinic.




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