Schuyler’s monster was not a creepy creature hiding in the closet, nor was it a lovable wild-rumpus animal longing for mischief, rather the monster that held Schuyler in its claws was a terrible, rare disorder which left an adorable, happy little girl unable to speak. For two long years Schuyler’s parents searched for answers in hearing clinics and child development centers to their beloved daughter’s worrisome lack of speech as well as her drooling and lack of fine motor control only to end up with a vague, inconclusive diagnosis of pervasive developmental disorder. The answer finally came after an MRI: congenital bilateral perisylvian syndrome, a brain malformation that would never get any better. “She was broken,” her heartbroken father writes, “and they would never be able to fix her.”
How do you treat the untreatable? – start with two parents absolutely determined to give Schuyler the tools she needed to succeed. And if this meant alienating well-meaning teachers who low-balled Schuyler’s abilities, or soliciting donations for a top-of-the- line Alternative and Augmentative Communication device (the “big box of words”, as they would call her AAC device) that allowed Schuyler to communicate, or even moving to a conservative community that had a superior special education program, well, that’s what her parents would willingly do to fight Schuyler’s monster. Blunt, heartfelt, with a welcome dose of black humor, Schuyler’s Monster is a thoroughly engaging memoir of a charming, wordless little girl.
Schuyler’s Monster by Robert Rummel-Hudson