I had the great priviledge to know Esprit.
We had some fun when we got to hang out together. Now, please understand, we didn’t have serious conversations about response to intervention and such. To be sure, though, she grabbed onto me, as one can see in this photo… I want to think she was giggling.
Esprit had disabilities. The genetic basis of her disabilities was trisomy-18, a rare disorder. The syndrome has many associated problems (physical and intellectual disability) and usually a very brief life span. Her father helped educate the public about kids with disabilities by writing honestly about her (e.g., Willingham, 2018). There is an important message here: Please don’t try to ignore disability; it’s a natural part of humanity and individuals with disability should be treated like humans.
In this photo, Esprit was about 8 years old. A huge proportion of children with Trisomy-18 don’t make it through their first year, so she’s at a ripe old age!
In July 2021, when Esprit was past her age of majority, I got an e-mail message from Esprit’s father, Dan, that Esprit had passed away the previous day. Although I was greatly saddened, I have a hard time conceptualizing the sadness that her parents and siblings experieneced.
Still, there is a good side here. I got to know Esprit. I’m glad to have had that opportunity. Over her too-brief life, I had the pleasure of spending time with her. I think I can say with confindence that, for me, she provided special education.
Willingham, D. T. (2018). My daughter’s disabled. Please don’t look away from her. Los Angeles Times. https://www.latimes.com/opinion/op-ed/la-oe-willingham-how-to-interact-with-a-disabled-child-20180322-story.html