“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