Chapters 9 and 10

“No one knows for sure why it happens. It might begin with an infections, perhaps one so slight that the mother never even knows it happened.” Robert wrestles with coming to terms with what they call “the monster” referring to their new diagnosis they have received for Schuylers brain disorders called Polymicrogyria. Poly meaning ‘many’, micro meaning ‘small’, and gyria which refer to the fold in the surface of the brain. A typical brain has these folds, but a brain affected by this disease has too many and they can be smaller than they should be. Robert goes on to explain that the Polymicrogyria is really an umbrella term for a number of disorders in the same family. They all however share some common traits or symptoms including: feeding difficulties, respiratory issues, developmental delays, fine motor dysfunction, seizures, and mental retardation. Almost all of the disorders are bilateral and can be difficult to diagnose, visible only in an MRI or CT scan. Robert goes on to break down several disorder within the family of disorders, but finally arrives at Shuylers monster called ‘bilateral perisylvian polymicrogyria’ or BPP. Some of the differentiating features of BPP were facial paralysis, resulting in speech difficulties, excessive drooling that can lead to feeding problems with in infancy. Robert points out that “it lives in the deeply grooved area” of the brain call the Sylvian fissure, which impairs both speech and fine motor areas. The other “terrifying’ weapon that Schuyler’s monster could present were seizures. Robert goes on to go through a description of absence seizures and grand mal seizures. Patients suffering from BPP develop symptoms @ different times and with varying levels of severity. Some are profoundly impaired, some suffer from cebral palsy, other need feeding tubes. Shuyler suffered a ‘complete speech deficit, as well as some difficulty chewing some foods, weak but not paralyzed facial muscles”. He ends the chapter with a fearful thought of what is to come and specifically the onset of seizures. Shuyler is three at this time and the seizures typically would present around 6-10 years of age. He ends the chapter saying “There was no way of knowing if a bigger monster lay in wait for her.”

Overall impression of Chapter 9 is that Robert gives a very clinical description of ‘Shuyler’s’ monster during a fact finding stage of their process. He still gives very ‘broad’ description re: her communication and the therapist in me wanted more specifics re: her use of signs? Receptive language? Non-oral communication? Pragmatics ect. Ect. Ect. Perhaps more to come in later chapters?

In chapter 10 anger gives way to acceptance. This seems to allow Robert to begin looking at some more practical approaches to Shuyler’s monster. He begins by obsessively looking up everything he can find online about her condition and in 2003 there wasn’t much info out there. Her condition had only been identified 10 years prior. In the decade to follow there was much learned by two specific doctors/specialists. According to Robert “We found enough information to scare the crap out of us, but not really very much that was of any use to Schuyler.” Robert felt lost on what to do next and was eventually referred to visit a geneticist at Yale. Robert described the doctor as being cold and ‘wasn’t a terribly sociable person and wasn’t necessarily concerned about Shuyler as a person.’ In the end he found his no-BS approach oddly refreshing. Robert gained some comfort from this geneticist in that the doctor wasn’t terribly concerned about mental retardation and the doctor remained unconvinced that any absence seizures had occurred. The doctor told Robert “There’s a lot crap out on the Internet, and most of its wrong” “I’d just stay away from it altogether if I were you” Good advice!

The diagnosis brought them to a place that they accepted that there was no solution to Schuylers problems and nothing was going to fix it. Robert starts thinking more about Schuylers future. It seems he has gotten over the initial panic and raw anger/fear and is ready to seek out functional solutions for Shuyler’s condition. One such example is that they end up pulling Schuyler out of her classroom in Connecticut. Robert noted that one of the things that attracted them to Connecticut was the great school system, which seemed to all fall apart or did not apply any longer in the special education world. They were particularly unhappy with the large mixed classes and varying levels of needs. The most severe kids obviously attracted the most attention in the classroom and Robert noted the only individual attention they felt Schuyler received was during Speech, OT, and PT. They eventually become disenchanted with not just the schools, but with Connecticut and decide to move to Austin, Texas. So they pick up and move to Texas with Robert working at the Apple help desk. The chapter comes to a close with a termination notice from Apple. The chapter ends with Robert stepping outside on Valentine’s Day to an unexpected snow flurry and a sneaking suspicion that their move to Austin had been a mistake.

–Jason Murray, SLP at Westport Middle

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7 thoughts on “Chapters 9 and 10

  1. Melanie says:

    The last two sentences of chapter 9 left a lasting impression on me. Schulyer’s seizures associated with BPP started at age 3 and they typically present in BPP between the ages of 6 and 10. “There was no way of knowing if a bigger monster lay in wait for her.” As a parent, I can’t imagine the anxiety of knowing the seizures started way earlier than normal and how the early onset of seizures will impact her overall life ( more frequent seizures, longer lasting seizures, cognitive skills, eating, etc.). They keep facing major setbacks and it is a wonder they have the strength to carry on.

    I think as a clinician it would be unsettling as well because gains made could be completely eliminated by seizures. And I am sure the parents keep that in the back of the minds at all times.

  2. Karen says:

    Finally, a diagnosis, an answer. Sometimes we need to be careful what you wish for. After learning of the diagnosis, the fact finding mission often isn’t very pretty as was in this case. I believe, however, that this was the first time they were closer to acceptance. I had strong feelings when I read this chapter about the medical establishment. If this doctor wouldn’t have asked for the MRI, when no one else had, they may never have come to a diagnosis.

  3. Rachel Lacap says:

    Like the nerd that I am, I enjoyed the scientific nuances of chapter 9 and learning a little more about BPP. I felt the fear and terror that her parents felt about the possibility of impending seizures. The future is scary with such unknowns in its path.
    In chapter 10, I felt like the family was looking for a fresh start. I know first hand that living in a city wherein you have no family is difficult, even for families who do not have children with special needs. I cannot imagine not having that support system when it is just you and your spouse. I completely understand their desire to move closer to family. I hope that the authors feelings of the move being a mistake are unfounded and just nerves over a new situation.

  4. Kim Raho says:

    I thought about INSURANCE and needed salary. Open enrollment is ending for us now, but Robert had snow flurries falling on his “big stupid unemployed head.” Gosh, it is a big thing for all of us to have insurance and stability to cover medical bills etc. It is one of the major benefits of working at JCPS. I can’t imagine making such a huge move to Austin with a child who has special needs, and then right away you are terminated from your new job. Talking about stress? New frightening diagnosis for your child? Move to another part of the country? New job? Then, lack of job and insurance. As I was filling out my Open Enrollment plan and reading this…I thought….what would he do now? He kept saying “I needed it to work out.” And, “I really tried to make it work.”

  5. Marie Fisher says:

    I enjoyed both of these chapters. These chapters reminded me of how minimal my “stresses” are at the current moment (a common feeling I have while reading this book). Like Kim, I was also stressed about my long to-do list this week and reading about Robert’s move to Austin and the fear of having insurance and a stable job definitely puts things into perspective. I also agree with Jason in that Robert provided ‘broad’ descriptions of Schuyler’s diagnosis of Polymicrogyria. I wanted to know more of the specifics as well, but I guess not everyone reading this book is a SLP nerd! 🙂

  6. Sarah Coty says:

    This chapter was one of the more chilling chapters for me. They hear this major diagnosis but still don’t have real answers as there are so many potentials such as more seizures, unknown about her continued development, a prognosis that is unclear. I do think it’s amazing that they finally were able to get a diagnosis as they had been through so much with no real answers.

  7. allison forrester says:

    Theses chapters are definitely a pivotal moment in the book, because all of this time goes by with no diagnosis and they finally have it. I wondered why there was no genetic or neurological testing before this point. I have a friend who has a daughter with Angelman Syndrome and Schuyler reminds me a lot of her, so I feel like I know her.

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