by Kristin Cummings and The SLP Book Club
I am so glad that Schuyler’s Monster was chosen for July’s book for the SLP Book Club! This is a book that I have already passed on to friends and parents to read. Schuyler’s Monster is a father’s story about his journey with his daughter. Schuyler (pronounced Skyler) was 18 months old when her pediatrician became concerned about her communication development. After many tests and doctor’s appointments, Schuyler was finally diagnosed with bilateral perisylvian polymicrogyria (an extremely rare neurological disorder)
One thing that I loved about this book is that Robert Rummel-Hudson does not candy coat his daughter’s disability, the journey, and the stress that comes with raising a child with special needs (including an affair.) He calls Schuyler’s disability her “monster.” Although some have been upset about Robert’s word choice, I admire his honesty. Caring for a special need’s child is not easy. Even more, having to see the “monster” take away your child’s ability to communicate with you is heartbreaking. This book brought out many emotions in me. There was one point where I was furious at Schuler’s teachers when her father realized they had muted her communication device and forgot to turn the sound back on before they sent her home! I was also thrilled and proud of Schuyler when she defended her self from a girl at the mall playground that was bullying her. Overall, this was a fantastic, eye-opening read. I would highly recommend this book to others. But don’t just take my word for it; here is what some of the other readers thought about the book:
“I could not put this book down. I read it in two days! It was truly amazing. I kept picking out passages to read to anyone who would listen. The humor and passion written in this book is so great. There were many parts of this book I wanted to shout and yell at uncooperative therapist/ bystanders. It was an eye opener to see how they dealt with conflict and did their best to overcome it. I was lucky enough to intern at a preschool that was designed for children with severe communication disorders. We used as many modes of communication possible with the students (gestures, spoken, pictures, aac, sign language, etc) and to hear about a school designed for AAC users exclusively was amazing. I am so happy I was able to learn more about AAC at that internship so I can continue to use it today.
To finish off my random comments about this book, a quote I loved.
“Imagine walking through the woods at night, all alone. In the darkness behind you, something is following, stalking you. You can hear it…. In your mind you wonder What is it?… your mind conjures up the most likely explanations. Suddenly you stumble into an open area bathed in moonlight. You step to the center and turn to see what is following you.
The bushes part, and out steps a Tyrannosaurus Rex.”
“I really enjoyed the book. However, I was slightly disturbed about how dad referred to the monster. If Schuyler is to go back and read this, I wonder what she would think about being told a monster lived inside her. Dad was pretty clear in separating the monster from Schuyler and almost treated them as 2. To me, the parents needed to accept her as a whole and not put such a negative connotation on her disability. I went to his blog and she is now cheerleading in grade 8, but the monster continues to exist. If we think of kids on our caseload, whether it be deafness, autism or CP, we would never separate the dx from the child. Don’t get me wrong, the book was very good and I was glad to see how they fought the school system with the assistive communication. I was very troubled that they would turn her “voice” off. I hear the horror stories, but so sad to read about them. I hate to hear that is still happening. With the deaf, I know many kids were told to take off their hearing aids, or told not to sign – depending on what phase the world was going through. Most of that was 30yrs ago – with all the laws in spec Ed, I am surprised it was tolerated by anyone. Here, in Canada, it would have gone to court pretty quickly.”
It is never to late to join in the reading fun. Currently, we are reading Out With It by Katherine Preston. To learn more about the book club, please visit Simply Speech!
About our Contributors: Kristin Cummings and the SLP Book Club
Kristin Cummings, MS., CCC/SLP is a private therapist from St. Petersburg, FL. She has a background in early childhood and school based therapy. She is the author of the Simply Speech blog. You can reach Kristin by email at [email protected] or Twitter @simply_speech