Ashley keeps up on a lot of blogs, particularly those that are by parents of special needs kids. Maybe I’ll have her do a post soon on them. One that she has been following for a while now is Fighting Monsters with Rubber Swords, the funny, sad, heartfelt and thoughtful blog of Robert Rummel-Hudson. His daughter Schuyler was born with a brain malformation called bilateral perisylvian polymicrogyria, which most noticeably affects her ability to speak. Rob has been blogging for several years now and recently published Schulyer’s Monster: A Father’s Journey with His Wordless Daughter. Ashley loved it, recommended I read it, I read it, loved it, recommended it to my book club and they all loved it.

What stands out immediately in the book is Rob’s honesty. I assume that most parents want to be considered good parents, and I’m sure there would be a tendency to gloss over some of the less glamorous moments that every parent has, but Rob lays it all out there. His candor and quick wit had me drawn in from the beginning. I wasn’t sure how much I would be able to relate to Rob, having just started my fatherhood journey, but the book deals with so many topics that we all can relate to: fighting for something we believe in, struggling to find meaning in life, feeling inadequate and feeling tremendous love.

He writes a lot about dealing with doctors and schools, and fighting for Schuyler when the “experts” disagreed with him. One thing he shows over and over again is how well-informed parents are the best experts on their children. With Ashley in med school now, I’ve been thinking a lot about the relationship between doctors and patients now that so much information about health is available online. I know I tend to self-diagnose before I even think about going to a doctor (if I even go after self-diagnosing), and having spent my whole life with myself, I know quite a bit about how I work. So when doctor’s don’t even listen to what I have to say it feels like when the dude at Jiffy Lube tries to tell me that my fuel filter needs changing because he doesn’t know I replaced it a month ago. Rob shows that a parent can be the best advocate and best expert of his or her child, and really should take the time to be just that.

This book is a great read for anyone, and I think doctors and educators – especially those in special education – could gain some great insights from it. Schuyler’s journey is truly remarkable, in no small part due to her crusading parents. People say it’s hard to describe a parents love for a child, but Rob does a great job of conveying it. A perk to reading Schuyler’s Monster is that I can keep up on Schuyler (and get a healthy dose of Rob’s synicism) on the blog.