If you haven’t already read this book, I highly recommend it. I devoured it in one day, and that’s while parenting a two year old so I think that says a lot!
In the book, the author’s (Rob Rummel-Hudson) daughter’s name is Schuyler and her “monster” is the neurological disorder Congenital Bilateral Perisylvian Syndrome (CBPS) . According to Schuyler’s dad, “verbal apraxia is one of the manifestations of Schuyler’s Bilateral Perisylvian Polymicrogyria”. Apraxia isn’t actually mentioned in the book, but I came across this information later on his blog.
I got really emotional reading this book and I didn’t expect that. Reading this father’s journey with his daughter’s disorder brought back all of the feelings I’ve had over the last year on this rough road with Henry. He articulated so much of what I went through and in an eloquent and real sort of way. It was almost like reliving the first months when we were left wondering …what is this, will he ever speak, will he be happy? These are all questions that most parents of nonverbal children ask themselves at some point, especially when a diagnosis has not yet been made. It was so relatable from a parent’s perspective because it verbalized the anger, the mourning, the self doubts, the protectiveness you feel for your child and the absolute joy in even the littlest of triumphs.
I also liked reading it from the father’s point of view. A lot of stories about special needs children are told by the mother, who is typically seen as the main caregiver and advocate. Of course this isn’t always the case, it just seems to be what you hear about most…whether it be in books, articles, blogs etc. So this perspective was refreshing and insightful. The book touched on how these situations can affect your marriage and other relationships, the challenges battling the school system and advocating for your child, and the remarkable benefits of AAC devices for children like Schuyler.
This book is full of heart with a dose of humor. It’s a testament to a parent’s unwavering love for his child. It’s a must read!