Pour les parents des enfants qui fixent ma fille handicapée

Daniel Willingham a écrit:
Tomorrow, March 18, is Trisomy-18 awareness day. It’s important to me because one of my daughters, Esprit, has Trisomy-18. In the spirit of the day I’m going to offer just a little background for those who are unfamiliar with it, but focus mostly on one interaction small children typically have with Esprit—staring at her.

By way of background, Trisomy-18 is a chromosome disorder. Each cell in the human body has 23 pairs of chromosomes, strands of DNA. Trisomy means that there are three copies, not two, of one of the pairs. Three copies of the 21st chromosome is Trisomy-21, also called Downs Syndrome. Three copies of the 18th chromosome give you Trisomy-18, also called Edwards Syndrome. (So now you know why they picked the eighteenth of March—3/18—as Trisomy-18 awareness day. )

There’s no particular cause—it’s a fluke. There’s also no cure, and over 90% of the children born with Trisomy-18 die within the first year.

Esprit is unusual for still being here at age 13, but her profile is typical of Trisomy-18 in other ways. She cannot walk or speak, and she learned to sit upright about a year ago. Cognitively, she’s like a one-year old on many dimensions.

My goal here is not to raise awareness about the medical side of Trisomy-18—if you’ve read to this point, you’ve come close to the end of my knowledge—but rather to consider the manner in which you are most likely to encounter a child with Trisomy-18; out and about with your own child. Older kids (and their parents) will sneak a surreptitious glance at Esprit. Many adults will smile and some will approach her, always with warmth.

But kids aged two to six are generally flummoxed and show it. Parents are usually not prepared to respond to their child’s curiosity and bafflement.