CAMAFLAUGE RETAINER
Jamie knows this story is in the book, but he wanted to list it here anyway, just because.
PENNSYLVANIA COUNTIES
All sixty-seven of them, in alphabetical order, sometimes annotated with the names of their county seats (Bellefonte for Centre County, for example). For the sake of variety, Jamie sometimes lists them not in alphabetical order but by the year of their founding. Yes, he does this all by memory.
HANNING WITH NEW FRIENDS IN STATE COLLEGE
I am puzzled by “hanning.” Jamie almost never misspells the name of even the most exotic creatures in animal hangman. But yes, he does like hanging with new friends!
OFFICIAL STUFF LIKE OFFICIAL PUDDING
This is a curious feature of contemporary capitalism that never fails to amuse Jamie: the designation of products or corporations as the Official Thing of a sports franchise or league. It began at a Mets game in 2010, when Jamie and I were surprised to learn that Cozy Shack is the official pudding of the New York Mets. Official pudding? The official beer and the official hot dog, that makes sense. But pudding?
We soon learned that the sports world is full to bursting with all manner of official products, from the official pizza and TV of the National Football League (Papa John’s, Samsung) to the official salty snack of the Pittsburgh Pirates and the official training restaurant (say what?) of the Mets (Utz, Subway). If you hang with us for long enough in State College you will also learn that the Philadelphia Eagles have an official coffee (Dunkin’ Donuts) and the Pittsburgh Penguins have an official ketchup (Heinz, of course). And as this book goes to press, Jamie reminds me that I have to acknowledge that Casillero del Diablo is the official wine of the New Jersey Devils. It is a strange world we live in, is it not?
FUNNY NAME IN EVERY STATE
Lover, Pennsylvania. Romney, Virginia. Horseheads, New York. Jamie reads highway signs on all our road trips, and never fails to call out town names he finds silly. We have not yet found a funny name in every state, because Jamie has been to only—only!—thirty-nine of the fifty. But we are getting there. Ketchum, Idaho, and Smackover, Arkansas, someday you will be ours.
SUTDY ABOUT THE COMPOSERS
Jamie has those composers locked down. He knows how to spell “study,” too—he just gets a little careless sometimes. Perhaps relatedly, he sometimes skips small words when he reads aloud. He does not sweat the small stuff.
SUCBA DIVING IN SAINT JOHN’S
He did not actually scuba dive in St. John in the US Virgin Islands in 2014. What he did do—and it took as much courage as going off the diving board—was agree to wear a mask and fins for swimming. He was leery of the deep water and afraid to go down into it to see all the fish. But with Janet’s help, he managed to get an eyeful of hundreds of beautiful tropical fish, and now he’s totally up for doing that again. Perhaps next time he will try the snorkel. . . .
Update: In March 2016, he tried the snorkel! It was difficult for him, and sometimes he would put the entire mouthpiece behind his teeth, which induced gagging. But when he got his teeth clamped in the right spot and closed his lips over the mouthpiece, he was able to snorkel and see tropical fish and a couple of sea turtles and a couple of manta rays. (Neither of us had ever seen manta rays except in aquariums.) He was thrilled. And as I held his hand and paddled around the coral reefs of Saltpond Bay on the southeast end of St. John, I kept thinking, He is a brave and very good young man, and je suis très, très fier.
“BEATLES”
So central to Jamie’s love of the world they get quotation marks!
THE SIMPSONS
Jamie is not really a big Simpsons fan. In the past, his favorite TV shows have been things like SpongeBob SquarePants (which he now considers “annoying,” as he informed me as we went to press), iCarly (he owns the DVDs of the first three seasons), Big Time Rush, and Monk (he asked me if he could have my mother’s DVDs of the first four seasons after she died). But like millions of his nondisabled peers, Jamie knows that sometimes, a quote from The Simpsons is the perfect response to the world. Mmmmm . . . donuts. What can’t they do?
ZOMBIES
Not the band, the creatures. It all started with Jamie’s meditations on the Inferi in Harry Potter. Now Night of the Living Dead is among Jamie’s favorite movies, and he’s especially tickled that it was filmed near George Romero’s native city, Pittsburgh.
THE FIRST DVD OF BIG TIME RUSH
Apparently this is the better of the two BTR DVDs Jamie owns.
LOST OLD DEBIT CARD IN NORTH CAROLINA
You know, you absent-mindedly leave just one debit card in one ATM in Durham and your kid never lets you forget it. From 2006.
HOW LONG SUBMARGED IN THE POOL
Inspired, as I mention in the chapter on Jamie’s athletic accomplishments, by Percy Jackson.
THE HUB CORAL
In Penn State’s HUB-Robeson student center, there is an aquarium, a gift from the Class of 1999. In it is a small coral reef populated by tangs, sea stars, giant cucumbers, snails, blue-legged hermits, and about forty species of coral. When we moved here, Jamie would visit the tank on weekends, and he could look at it for hours or until his father’s patience wore out, whichever came first. (It really is a beautiful thing.)
ATLAS OF THE WORLD
Which Jamie takes with him every time he travels, and in which he finds hours of edification and material for lists and lists.
SOCCER IN THE LIVING ROOM
Another weekend amusement from when we first moved to State College. We didn’t use a real soccer ball—we played with something much lighter and less likely to do damage. I had to defend the entrance to the kitchen, and Jamie had to defend a piece of furniture whose legs constituted the goalposts—goalposts that were just barely wider than the diameter of the ball. Jamie won every single game we played.
And now for three things Jamie didn’t write down but told me:
ARCHITECTURAL DIGEST
Jamie often visits Schlow Library in downtown State College, where he peruses the magazines—including this one, to which he has had a subscription since fall 2014. He is very enthusiastic about it, asking me every month whether his new issue has arrived yet. I do not know what drew him to lavish depictions of rich people’s houses; it could be that he finds lavish depictions of rich people’s houses worthy objects of his attention, or it could be that he associates the magazine with his brother the architect, who was given a gift subscription by fond Lyon grandparents who wanted to encourage teenage Nick and apparently believed that Architectural Digest had something to do with architecture. Either way, Jamie is delighted whenever a new issue arrives, and he keeps his issues in his basement lair.
MAGIC CARDS
Oh, goodness, the Magic cards. I estimate that there are over two thousand of these things in the house, most of them in shoeboxes in the basement lair. I have asked Jamie more than once if he wants to learn to play the game, but he is not interested—he just likes the cards. All his many many many many cards.
SHARKS
They endured.
Acknowledgments
This book is dedicated to all the people who have cared for or worked with Jamie, but I’d like also to single out the people who have been indelible influences on his life. Some of his teachers and paraprofessionals are mentioned by name in the book, as well they should be, for their great work; but I wanted to try—with Jamie’s help—to give a shout-out to everyone Jamie remembers especially fondly.
His earliest aides and helpers appear in Life as We Know It: Rita Huddle and Sara Jane Annin, his first early-intervention supervisors; Ofra Tandoor, the physical therapist who got him to the point at which he could try to walk; Nancy Yeagle, the occupational therapist who got him to the point at which he could try to write; and Anne Osterling, the speech therapist who got him to the point at which he could begin to chatter. Doctors Donald Davidson and Kenneth Weiss were his first pediatricians; in State College, Craig Collison and Jeffrey Pro have been
his primary-care physicians.
His teachers, from kindergarten through eighth grade: Ms. Warner, Ms. Walker, Ms. Borgeson, and Ms. Williams in Champaign; Mr. Hockenberry, Ms. Wolf, Ms. Peachy, Mr. Tranell, Ms. Owens, Ms. Pelligrini, Ms. Westerhaus, Ms. Lee, Ms. Hetrick, Ms. Kump, and Mme. Eid in State College. His paraprofessionals: Ms. Avellone, Ms. Hiser, and Ms. McCabe in Champaign; Ms. Poorman, Ms. Pontano, Ms. Moyer, Mr. Burruss, Ms. Kaufmann, and Ms. Walker in State College. At LifeLink PSU, Marla Yukelson was consistently supportive; at Penn State, Marianne Karwacki hired Jamie into his first two paying jobs; Sandy Cecco of United Cerebral Palsy-Central Pennsylvania works with him twice a week at the animal shelter and on independent-living skills more generally; and at the Arc, Terry and Alex have been his job coaches and Lisa Schencker his caseworker. Thanks also to Luke Ebeling for shepherding us through the maze of Pennsylvania bureaucracy.
And his many companions, chiefly Denise O’Brien and Liz Minster in Champaign, who were far more than babysitters; they were guides and mentors. In State College, chiefly Vita McHale, Erin Greech, Clairen Percival, Jenna Groff, Anthony Alberici-Bainbridge, and the amazing Lindsay Northup-Moore, who not only gave that moving speech at his graduation from LifeLink PSU but stayed with him at our house for nine days in the summer of 2012, while Janet was teaching in Ireland and I was attending a conference in Australia. Jamie’s LifeLink PSU mentors included Peggy Reals, Stephanie Berdya, Brin Kendal, and Sara Licata, whose names still bring a smile to his face. And then there were all the companions Jamie remembers only by first name: Julene (his first), Heidi, Wendy, Amanda, Josh, David, Sibi, and Laura.
All of these people treated Jamie with care, friendship, and respect. All of them treated him like a fully-fledged member of the human family. All of them helped Janet and me lead our lives as college professors—indeed, as college professors whose schedules sometimes take one of them to Dublin while the other heads off to Canberra.
And then there is Jamie’s extended family. From day one—literally, from the day I dashed home from the hospital to call everyone with the news that Jamie was born (this used to be one of Jamie’s favorite stories, but he has long since outgrown it)—his grandparents and aunts (seven) and uncles (three) and cousins (four, all younger than he) have been a source of love and constant delight for him. Special thanks are surely due to the relatives who have hosted him when we have traveled for business: Bud Lyon, Sarah Higgins, and the twins, Trevor and Dash (and special thanks to Trevor for his own Adventures with Jamie); to Barbara Lyon and Steve Maggs (who have also vacationed with us many times); to my parents, Maurice Bérubé and the late Anne Clarke Bérubé (who also watched Jamie and Nick while Janet and I took three-day mini-vacations on Cape Hatteras in the mid-’90s); to Kay Lyon, Janet’s mother, and Janet’s dear departed father, Brad, for taking Jamie for more overnights than we can count; and to my sister Katherine Bérubé Boyer. But everyone else—Cynthia Lyon and Collin Tilton; Jeannie Bérubé, Clair Bérubé, Johnny Bérubé, and Marie and Christopher Boyer; Todd Lyon and Hayward Gatling—is just as important in Jamie’s world and have helped to make Jamie’s world as rich and as enjoyable as it is. There is nothing Jamie enjoys so much as a large family gathering with all the people he loves, and with good reason. Bud and Barbara deserve another round of thanks for being willing (and able!) to sing Beatles songs to Jamie over and over and over again. . . .
Oddly enough, since 2002, Jamie has attended eight conventions of the Modern Language Association (MLA) in venues ranging from Vancouver to Philadelphia to Austin, Texas. MLA executive director Rosemary Feal has always welcomed him warmly, and Jamie knows it and is grateful; he genuinely enjoys going and greeting everyone he knows and many people he doesn’t. One year he decided to get acquainted with Simon Gikandi, from Princeton by way of Uganda, who was sitting by himself at a party (Jamie opened by asking where Professor Gikandi was from, and he loved the answer). Within five minutes of Jamie’s arrival, that table became The Table Everyone Sat At. At the 2016 MLA convention Jamie decided that, as an employee of Penn State Press, it was his job to go to the book exhibit and work the Penn State Press booth, asking passersby what their field was and what kind of books they liked, and then handing them copies of the Penn State Press brochure. So thanks also to Kendra Boileau, editor in chief of the press, and of course to Tony Sanfilippo, who hired Jamie in 2014.
Our closest family friends are practically family. Here at Penn State, Susan Squier, Gowen Roper, Hester Blum, and Jonathan Eburne have been not only great friends but great souls; Amanda Anderson, once our neighbor on Willis Avenue in Champaign (and our English Department colleague at Illinois), remains one of Jamie’s favorite people; and Gail Corbin and her family have been boon companions for decades. All our family friends have offered Jamie a place in their homes (whenever he should need one) and a place in their hearts, and Jamie thinks of them with great affection. As do we.
Christopher Robinson and Phyllis Eisenson Anderson read most of this book in manuscript; Conal Ho read the chapter on Nick—as did Nick, passing around the pages to Rachel and to his friend Arthur Shufran. Joanna Green at Beacon Press is an eagle-eyed and sympathetic editor, and I thank her for making this book so much better than I could have managed on my own. I am of course deeply grateful that she and Helene Atwan supported this book so strongly and enthusiastically. And a special thanks to J. M. Coetzee, who graciously gave me permission to borrow hundreds of his words—that brilliant passage from Elizabeth Costello that closes the discussion of Jamie’s relationship to his animal companions. I have solemnly promised Mr. Coetzee that I will return these words when I am done with them.
Everyone who knows our family knows that Janet Lyon is an extraordinary woman. Scholar, nurse, dancer, teacher, singer, writer, ridiculously talented and resourceful mother, gorgeous, generous, and delightfully witty wife, and—not least—a merciless editor. You should know this too, because without her, nothing in this book or in my life makes sense.
Notes
[11] about whom she has written movingly in Raising Henry Rachel Adams, Raising Henry: A Memoir of Motherhood, Disability, and Discovery (New Haven, CT: Yale University Press, 2013).
[17] Jean Bethke Elshtain, reviewing the book for a Christian journal Elshtain, “Idiots, Imbeciles, Cretins,” Books and Culture: A Christian Review 4, no. 1 (January/February 1998), http://www.booksandculture.com/articles/1998/janfeb/8b1018.html.
[17] Here’s the relevant passage Michael Bérubé, Life as We Know It: A Father, A Family, and an Exceptional Child (New York: Pantheon, 1996), 89–90.
[18] such openness is the very essence of parenting Michael Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering (Cambridge, MA: Harvard University Press, 2004), 45.
[28] the extraordinary account of her nearly fatal stroke Jill Bolte Taylor, My Stroke of Insight: A Brain Scientist’s Personal Journey (New York: Viking, 2008).
[28] “deserving of love, opportunity, and acceptance just as they are” Timothy Shriver, Fully Alive: Discovering What Matters Most (New York: Farrar, Straus and Giroux, 2014), 23.
[53] the 2006 Hastings Center report Erik Parens, ed., Surgically Shaping Children: Technology, Ethics and the Pursuit of Normality (Baltimore: Johns Hopkins University Press, 2006).
[62] “parents have a definitional license to be paternalistic” Andrew Solomon, Far from the Tree: Parents, Children, and the Search for Identity (New York: Scribner, 2012), 111. Harlan Lane is a professor of psychology at Northeastern University and an advocate for the Deaf community.
[63] “Eat Too Many Doughnuts and Take a Nap” D. J. Bannerman, J. B. Sheldon, J. A. Sherman, and A. E. Harchik, “Balancing the Right to Habilitation with the Right to Personal Liberties: The Rights of People with Developmental Disabilities to Eat Too Many Doughnuts and Take a Nap,” Journal of Applied Behavior Analysis 23, no. 1 (Spring 1990): 79–89.
[63] Jamie’s Supplemental Security Income In December 2014, Congress passed, and President Obama signed in
to law, the Achieving a Better Life Experience (ABLE) Act, which allows people with disabilities to own up to $100,000 in assets. The plan is to be administered by the states, very much like 529 plans for college savings. (Indeed, since the ABLE Act amends Section 529 of the IRS code, ABLE accounts will be another variety of 529s.) Until we can open an ABLE account in Pennsylvania, however, Jamie will maintain his special-needs trust.
[64] “shards of wood and glass” Courtney Jolley, “Dynamic Duo,” Potential (Kennedy Krieger Institute) (Fall 2005), http://www.kennedykrieger.org/potential-online/potential-fall-2005/dynamic-duo.
[65] “Could the Dems really have done that bad of a job vetting this family?” For the antics of Malkin and Limbaugh, and the response of Senator McConnell, see Paul Krugman, “Sliming Graeme Frost,” New York Times, October 12, 2007, http://www.nytimes.com/2007/10/12/opinion/12krugman.html.
[65] “kicking the crutches out from under Tiny Tim” Bérubé, Life as We Know It, 51.
[68] “The liberal media attacked Sarah Palin” Andy Barr and Mike Allen, “Barone: Media Wanted Palin Abortion,” Politico, November 11, 2008, http://www.politico.com/story/2008/11/barone-media-wanted-palin-abortion-015527.
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