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2. Matthew
- Vanderbilt University Press
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22 chapter 2 Matthew Stepping into Tom and Cheryl’s minivan was déjà vu for me: Sesame Street music on the CD player, the Kennedy Krieger Institute looming behind us, and a pale, dark-haired boy under a blanket in the back seat, snuggled next to his mother. It could have been me and Jonah during one of our many visits to Baltimore over the course of his ten-month hospitalization. But this time it was another boy I had come to visit: Tom and Cheryl’s thirteen-year-old son, Matthew, who was admitted to KKI’s Neurobehavioral Unit (NBU) in March 2009, like Jonah, for uncontrollable aggressive and self-injurious behaviors (SIBs). WewerewellonourwaytoMcDonald’s—alsoafavoriteofJonah’s— before Matthew emerged from his blanket to check me out. Diagnosed with autism and mental retardation, Matthew is non-verbal. Instead of greeting me vocally, he smiled, and that’s when I noticed his eyes, which weren’t like Jonah’s at all. Not only are Matthew’s eyes a striking grey-green color, but there was something subtly asymmetrical about his gaze that took me a moment to pinpoint: Matthew’s right pupil was much more dilated than his left. This, I learned, was because the lens in his right eye had been removed during surgery ten months ago. Matthew’s SIB was so bad that he had detached his own retinas. Tom and Cheryl weren’t even sure when the injury occurred, but it was diagnosed during routine tests KKI performs on all new patients who bang or hit themselves on the head. Matthew, who, at the time of his admission, hit himself in the face an average of two hundred times every hour, clearly met those criteria. Ophthalmologists estimated the retinas had been detached for at least three, and possibly five, months. Tom and Cheryl were shocked; because Matthew All names have been changed to protect privacy. Matthew 23 doesn’t speak, he couldn’t even tell them how badly his vision had deteriorated. Surgery was required immediately. Tom and Cheryl’s planned four-day trip to Baltimore to help Matthew settle in at KKI stretched to forty days. Although the surgery went well, Matthew detached his right retina a second time within a week. His doctors agreed to a second surgery, but warned that Matthew would blind himself unless his SIB could be stopped—something eight previous hospitalizations and a year in a residential treatment facility had failed to do. It was at this point that Dr. Wachtel , Matthew’s new psychiatrist at KKI, suggested he might be a good candidate for ECT. Tom and Cheryl aren’t the kind of parents who blindly follow their doctors. They have been integrally involved in Matthew’s treatment since he was diagnosed at twenty-one months. Tom even stepped down from his managerial position with an insurance company to take a more supportive role, one that would allow him to work fewer and more flexible hours, so he could focus on Matthew’s care. Tom and Cheryl designed spreadsheets charting every medication Matthew has ever taken, the dosages prescribed, and their effects—or, in many cases, the lack thereof—and have chronicled every specialist their son has seen, every diagnostic test, every hospitalization. While Matthew was still living at home, Tom and Cheryl were in constant contact with the school district, as well as the agencies that provided their home aides. When they found a residential treatment program they thought might help their son, they fought to create a new state funding program to support children as young as Matthew (then eight) in residential placements if their conditions warranted it. Six months later, when they decided it wasn’t helping, they marshaled all the state and local agencies required to bring him home. So, when Dr. Wachtel and Matthew’s NBU team recommended ECT, Tom and Cheryl didn’t agree immediately. They ordered a book on ECT to be delivered overnight to their hotel and spent the weekend reading it, along with any articles they could find on the Internet . They spoke personally with the doctor who would be performing the ECT. Only when they felt sufficiently educated did Cheryl give their answer: “How soon can we start?” “It was a no-brainer,” Cheryl said, as we waited in a booth at [54.243.2.41] Project MUSE (2024-03-28 23:51 GMT) Each Day I Like It Better 24 McDonald’s for Tom to navigate the overloaded...