Sportswriter Paul Daugherty had a few choice words for God when he learned that his daughter Jillian had Down syndrome. But he writes that the day of her birth "was the last bad day." In An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter, Daugherty writes about Jillian and his family's life together, living with a disability.
Daugherty's story is raw and personal, revealing the struggles that his family went through in Jillian's education and upbringing. Yet above all he conveys a sense of hope and joy as Jillian's personality and cheerful attitude shine through. Paul and his wife determined from the start that they wanted more for Jillian than the expectations of medical and educational professionals. For too long, parents "had been told their kids with special needs could not achieve." The Daughertys threw out that advice, educated themselves about laws regarding the education of special needs children, and fought for Jillian to be educated in a mainstream classroom.
I loved these chapters, as my family has been through the same trials: witnessing the horror of the self-contained classroom, convincing teachers that modification doesn't just mean crossing out a few questions, bringing legal pressure to bear on the district to simply follow the law. Daugherty writes, "No parents of typical kids have to fight their school district for the right to have their children in a typical classroom."
Why is inclusion such an important issue to parents of children with special needs? First of all, it's the law. But more importantly, "If you want kids with disabilities to achieve beyond the norm, why would you put them in a segregated classroom, only with other kids with disabilities?" Children should not be excluded from the overall educational experiences shared by their typical peers. And as inclusion advocate (and Jillian's future mother-in-law) says, "There aren't special lines at the grocery store" for people with special needs.
The Daugherty's love for Jillian is overflowing in the pages of An Uncomplicated Life. I'm sure they would say they simply love their daughter. But Jillian is the kind of person whose love spreads around her wherever she goes. As Daugherty's mother said, "Jillian is the best Christian I know. . . . She's kind. She loves genuinely. She gives. She enjoys life. . . . She acts like the rest of the world should act but doesn't. . . . Those who know her are moved to do better, to be better. To do good." Daugherty himself writes, "Jillian is closer to perfect than anyone I've known."
An Uncomplicated Life follows Jillian's life from birth, through childhood, to college, and eventually to engagement to her "best boy." Her story is a testament to the power of a family who chose to look not at what she couldn't do, but what she could do, who asks that we not merely look at Jillian, but see her. Jillian's example will inspire many parents of children with special needs not to settle for less than what standards the world might hold but to "expect, not accept." My daughter is 13, and has travelled some of the road Jillian has. Jillian's story encourages me to continue to raise her like Jillian, who is aware of the "shackles" of her disability but didn't let them hold her back. Thank you, Paul Daugherty, for sharing your beautiful daughter with us.
Thanks to Edelweiss and the publisher for the complimentary electronic review copy!
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