Special learning

Last week we were in a dialog with a variety of stakeholders in the care of disabled children in Kuching, Sarawak, Malaysia. One parent, Mr. Chi Poh Yung who founded a daycare center for children with cerebral palsy, named Wishesland, taught us the following valuable lessons. As doctors perhaps the most special and valuable learning comes to us by listening to our patients or their closest relatives.

1. In his daycare center, Mr. Chi said, no one is allowed to use the word cannot. Instead of saying that a child cannot walk or talk which provokes in our mind, the image of bedridden children not able to talk, the staff is very much encouraged to talk about these children as still learning to walk and to talk. This provokes in the mind of everyone who hears it, an image of a walking and talking child. I think personally that this change in approach is a very valuable thing. Positive expectations, positive imagery in our minds (and the patient's minds), leads to more positive beliefs in the potential of each child and eventually to better outcomes.

2. No one can touch a child in any way without asking his or her permission. How many times doctors show our students the brisk reflexes of the children who are badly affected without asking first explicitly permission of the children? They may not be able to answer in words, but they will feel respected and valued as a human being. No matter how bad the mental status of our patients, we will do no harm by asking permission for anything we do in the process of the medical consultation or during a teaching session. It can only benefit the person we examine, the patient.

Small things at first sight, but actually quite big things, at least big in the difference they can make for children who suffer from a severe disability and their parents.