Expect. Don’t Accept.

This is my book club read for the month.  It was an inspiring, if not entirely engrossing read.  The memoir covers Daugherty’s experiences as a father to Jillian, his second child, who has Down syndrome.  The diagnosis is a surprise to Daugherty and his wife Kerry, but they become loving, attentive, and tireless advocates for their loving, attentive, and tireless daughter.

Early on in the book, Daugherty reveals the mantras that he and his wife developed in the hospital that carry them through in their parenting journey.

“All You Can Do Is All You Can Do.

Nothing Is Definite.

Let Jillian be Jillian.

And above all: Expect. Don’t Accept.”

I was pretty floored that so early on they had a set of goalposts.  They wanted to help Jillian become the best Jillian she could be, regardless of what established knowledge of her disability would dictate.  Mainstreamed classrooms, riding a two-wheeler, having a boyfriend, learning to navigate public transportation, attending college, achieving independence…every goal that Jillian met involved hours of work, patience, and bravery on the part of the whole family and their village.

Chapters in the second third of the book about the battle to get public education services for Jillian soured me on some of the tenacity.  Public education law dictates that districts provide a free and appropriate education for all students, and if services that a student requires are not in place, the school must provide them or pay for the service elsewhere.  The Daughertys face a lot of opposition in their quest to get the best possible educational outcomes for Jillian, which made total sense in the efforts to have her mainstreamed with modified workloads. It started to feel less like a quest for justice to me and more like an inequitable distribution of resources for one student when the family locks horns with the district over their wish for Jillian to receive 2 hours a day of one-on-one training at a specialized reading center to the tune of $19,500 a year.  Daugherty himself speaks to his ambivalence about the battle, but it left me feeling a bit checked-out for the remainder of the memoir.

Even though I didn’t love this book, I think it will make for a lively book club discussion.  Opinions about the lengths the family went to to help Jillian achieve such extraordinary milestones are sure to be varied, and the book does touch on the implications of earlier prenatal testing in regards to the numbers of people with Down syndrome living among us.