The Citizen, Auburn NY
July 6, 2008
Review: Schuyler’s Monster
It is a universal truth that every parent wants his or her child to be healthy and happy; every other desire for them becomes secondary. When your child is born, you hold your own breath until you hear your baby take his first breath, and you wait for the doctor to say “You have a healthy baby!”
Imagine that you have a little girl who appears perfectly healthy, but as she grows older, you get a growing sense that something is wrong. Robert Rummel-Hudson and his wife Julie experienced that with their daughter, Schuyler. Robert began a blog about their experiences that became the book Schuyler’s Monster: A Father’s Journey with His Wordless Daughter.
Schuyler was a beautiful baby, and as she reached age two, it became apparent that she did not talk like other children of her age did. She didn’t say ‘mama’ or ‘dada’. Schuyler could pronounce vowels, but no consonants. She babbled a soft language that seemed to belong only to her.
At her eighteen month checkup, her doctor asked Robert and Julie if Schuyler had any speech. With each successive question Dr. Simon asked them about Schuyler, a sinking feeling that something was wrong became more pervasive.
Dr. Simon scheduled Schuyler for a hearing test. She failed her first test, and a second, more intensive test was given, which Schuyler passed. She could hear, but she couldn’t or maybe wouldn’t, talk. As Schuyler turned three years of age, other issues emerged. Toilet training was difficult, and she seemed to have low muscle tone and fine motor skills problems.
Robert and Julie lived in New Haven, and so had access to the Yale Child Study Center. Occupational and speech therapists worked with Schuyler. At this stage, Julie believed that it would be best to teach Schuyler sign language so that she could communicate with people.
The speech therapist opposed this idea, believing that it sometimes encourages speech-delayed children to rely on sign language rather than learn speech. This was the start of many struggles that Julie and Robert would face as they disagreed with experts on what was best for Schuyler.
They still did not have an answer as to what exactly was wrong with Schuyler. An MRI was given, and when Dr. Simon and her colleague showed Robert and Julie the results, it was shocking. Schuyler’s MRI showed that her brain has huge sections that were grey.
Those sections became known as Schuyler’s Monster. She had brain damage that had been with her since before birth. Called bilateral perisylvian polymicrogyria, it was extremely rare, and incurable.
Robert and Julie were devastated. All of their dreams for their daughter evaporated. After seeing a renowned expert in Detroit, they were told that she wouldn’t get better, but she probably wouldn’t get worse either. They did have to worry about her having seizures as she got older, seizures that could cause severe damage or even death.
How does a parent process this information? Where do they go from here? This can tear a family apart, and Robert is honest about how he and Julie drifted away from each other in an attempt to lessen the pain of the everyday sadness that hung over them.
The most moving chapter in the book is a letter that Robert wrote to Schuyler. It was written on Christmas night, after an unhappy day when Schuyler became frustrated with her inability to communicate with her parents.
Robert shares his feelings of frustration and guilt. He feels that he is a failure and a fraud as a father. He is sorry that he is not the father she deserves. He’d give anything to fix what’s broken, and his “heart breaks in two every night” for her. Your heart will break reading this letter.
One of the main themes of this book is how fierce parents must be in their fight to get their children the proper treatment and services from schools. On top of dealing with the health of their child, these parents also have to educate themselves on their legal rights.
Robert and Julie fought with more than one school district to get Schuyler the best education possible. They researched Alternative and Augmentative Communication (AAC) devices that would allow Schuyler to use a computer to communicate her words. The first time Robert and Julie heard a voice from the device speaking their daughter’s words, they cried.
When they discussed this with Schuyler’s teachers, some were responsive, others were not. The schools had to educate everyone on a limited budget, and Robert and Julie were responsible for getting the best possible education for their daughter. Frequently, these two paths collided rather than converged.
As Schuyler got older, she realized that she was different from other children. Robert and Julie dreaded this day. They were living in Austin, Texas, a progressive community, but were unhappy with the schools. In a stroke of luck, they met some teachers in nearby Plano, a more conservative community.
At this school, there were teachers and therapists who were excited about working with Schuyler. They had an entire class of children who used AAC devices to communicate. Schuyler would spend part of the day in this class, and part mainstreamed with other students. This was a dream come true for Robert and Julie!
Schuyler is a beautiful girl, so full of life and curiosity. She is ethereal, fairy-like at times, yet she adores dinosaurs and monsters. Although her life is difficult, as she grows older she becomes more aware of her difference from others, and she accepts it with grace. She teaches her parents about perseverance, unconditional love and true happiness.
Schuyler’s Monster is one family’s true story about dealing with every parent’s fear. Rummel-Hudson shares his fears, doubts, and anger at having to deal with Schuyler’s monster. He is honest about the indelible pain it has caused him and his wife, but he also speaks of the incredible joy that Schuyler has brought to their lives.
We all play the hand that we are dealt in life. Knowing that there are many people like Robert, Julie and Schuyler who play their difficult hand with grit, tenacity and love makes this world a much better place in which to live. I give Schuyler’s Monster four and half stars, and thanks to Rosemary for recommending it.
Schuyler’s Monster: A Father’s Journey with His Wordless Daughter by Robert Rummel-Hudson, published by St. Martin’s Press, hardcover, $22.95
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