Read it. That’s all there is to it. I loved this book and would recommend it not just to those closest to our daughter Ella, who also has Down Syndrome, but to anyone looking to become a better person. In An Uncomplicated Life, Paul Daugherty explores the complicated kaleidoscope of emotion that comes with his daughter, Jillian’s uncomplicated life. We don’t all have the privilege or opportunity to be front and centre in the life of an individual with Down Syndrome but because of this book, anyone can read about what that is like and draw wisdom and inspiration from the author’s experience. Daugherty traces the life of his daughter Jillian from her birth to her engagement to the love of her life, Ryan. He recounts the struggles, the victories and everything in between. It struck me as I read about his later conversations with friends of Jillian, that I have never heard of someone feeling as though their relationship with an individual with Down Syndrome was detrimental but rather, quite the opposite. Everyone who let Jillian into their heart benefited from her friendship – they felt that she helped them become a better person.
As a parent of a child with Down Syndrome this book struck a cord. Actually, not just one cord but many – from the twinkling major note flutters to the deepest minor cord clusters. It filled me with hope, it inspired me to keep fighting for inclusion and it gave me perspective on the challenges that lie ahead. Daugherty keeps it real. He doesn’t try to sugarcoat Jillian’s disability – he admits, its hard work. So many memoires about Down Syndrome only explore the grieving process after a child is born and while these books have their own benefits what happens after acceptance? What does life actually look like? Daugherty hits on all the major aspects of raising a child with Down Syndrome from IEP’s (Individualized Education Plans), to pre-natal testing and Down Syndrome Research, to inclusion, to sex to independent living.
I know that not every individual with Down Syndrome will live a life like Jillian Daugherty’s however, even now, at six years old, I see many similarities between my Ella and Jillian and I can only hope for some of the same experiences: going to university, finding belonging and falling in love.
I want everyone who loves Ella to read this book. When you have a child with Down Syndrome you mourn the ideals that you had for the life of your child but here is the clincher – their life might not be as you imagined but it can still be full and wonderful and rich and Jillian Daugherty’s life is the perfect example of that. I want everyone to know this. I want everyone who holds either conscious or subconscious stereotypes about disabilities to take a step back and adapt a new perspective – one of ability, not disability, one of more the same than different.
Thank you to Paul and Jillian (and Ryan) for sharing your inspiring story with us. You are changing the world and I dare say, Ryan, you are truly famous in my eyes!
You can purchase An Uncomplicated Life on Amazon. Here for Canadian readers or here for American readers.
**These are associate links (which means I get a little something if you do purchase through my site – thank you in advance for your support)
3 Comments
I will put this on my reading list. I feel the same way about Nerdy, Shy and Socially Inappropriate and Aspergirls both written by women on the spectrum and still giving insight to men on the spectrum in the first one. I have a tougher time with parental accounts unless it is written with deep insight and understanding from an autistic adult or something…most I find condescending or ableist or about the achievements of the parents instead of the person or about encouraging parents which is fine, but not enough about the particular beauty and unique differences…lately this book is making waves in the autism community and I like this review the best:http://eisforerin.com/2015/09/10/neurotribes-book-review/
Glad you found this book inspiring. Also, do you know of any books written in first person account of a child or adult with down syndrome that you would recommend? While I like some parenting books at times I would LOVE to read first person accounts. Anyway, in the meantime I will add this to my list and hope to get to it soon!
Thanks for the recommendation. I will put it on my list and hopefully we can chat about it – although, I can never quite guarantee how long it will take me to read a book (often that is up to Audrey 😉 ) I see what you are saying about a first person perspective however, I also appreciate the parent’s perspective since that is the role I play. I found this book on Amazon and will probably order it as well. http://www.amazon.com/Count-Us-In-Growing-Syndrome/dp/0156031957
Just from the “About this book” chapter, it sounds very interesting. And after all, Jason and Mitchell, the authors, say they hope everyone will read this book – well, everyone: I guess that means me! Other than that, I have not heard of any books written by an individual with Down Syndrome.
P.S. If you ever get extra time could you put this on your reading list?
http://www.amazon.ca/Nerdy-Shy-Socially-Inappropriate-Asperger/dp/1849057575
Maybe in the summer we can switch thoughts on each book…deal?:)