This month I am posting part of an essay I'm working on that was inspired by a blog post about a conversation with my oldest son Abe a year or so ago.
After dinner one night, as my oldest son Abe is emptying the dishwasher, he casually asks me if I know the chance of someone being diagnosed with autism.
I know it is high, but can’t remember exactly.
"One in 100?" I guess.
"One in one hundred fifty," he tells me, his 11-year-old eyes uncharacteristically wide with a mix of concern and awe.
We’ve just finished reading Al Capone Does My Shirts, a novel set in 1935 about a boy who lives on Alcratraz with his mom, dad, and sister who has autism. Abe learned about autism from that book, and then he saw an Autism Speaks commercial in which they compared the odds of a young boy later winning a golf championship to that same boy eventually having a child diagnosed with autism. For an athletic kid who is confident he will play professional baseball someday, this commercial had an impact. Something Abe considers rare, like having a kid with autism or any disability, is actually thousands of times more likely than him ever playing pro sports. This surprises him.
“Wow. One in one-fifty”, I repeat back, mirroring his awe.
Next he asks when we learned that his nearly nine-year-old brother Oscar had Prader-Willi syndrome. While Abe might be new to the language of autism, disability has been a part of his life since Oscar was born. Prader-Willi syndrome is a rare genetic disorder that causes developmental delays, cognitive impairments, low muscle tone, learning disabilities, behavior challenges, short stature, slow metabolism and most notably, insatiable appetite.
Oscar exhibits all of these characteristics to some degree, but he is also a hardworking, determined and fun kid who loves animals and music. He says he’s going to be a zookeeper and a rock musician when he grows up. If he has his way he’ll take over for Green Day’s lead guitarist Billy Joe Armstrong and run the San Francisco Zoo. I’m already scheming about how to help him get as close as he can to those dreams. (Perhaps a decent garage band and a volunteer position as a Zoo Docent will do?)
So when did we find out he had PWS? The answer to Abe’s question rolls off my tongue more easily than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."
"Hmm", Abe muses, lifting the silverware basket out of the dishwasher. "So he got it after he was born?"
"No, it happened in utero, when he was still inside me." I lean casually on the counter then, watching Abe sort the clean silverware into the drawer. I am balancing attentiveness and restraint, aware that if I appear too eager he might stop talking. Pre-teens are funny that way.
"So, you did it?" he asks cautiously, looking up from the drawer, aware of the gravity of that question.
"Well, kind of, but not really...." I reply. I explain, as I did a few years ago, that my egg had two chromosome 15s by accident and his dad’s sperm only had one, as it was supposed to. We talk about how the wrong chromosome 15, the paternal copy, got kicked out, leaving Oscar with two maternal copies, and PWS. I even tell him that the official type of PWS that Oscar has is called Uniparental Disomy, or UPD, literally meaning two chromosomes from one parent, me. The more common type of PWS occurs when there is a deletion of genetic material on the paternal chromosome. But either way, paternal genes are missing.
“So, Oscar, got lucky, then, having this kind of PWS, right Mom?” Abe asks, remembering that when Oscar was born we were told that PWS by “deletion” is sometimes considered to be more severe than UPD. Abe reminds me of myself so many years ago, searching for the hope amid the devastation.
But Abe doesn’t remember that when we had this same talk three years ago, he blamed me for Oscar’s disability. He pounded the arms of the faded green chair where he was sitting in our living room and kicked the huge pine toy box we use as a coffee table. He cried. He raged. It was my body that messed up. “It’s all your fault!” he screamed at me while I sat adjacent and tried to rub his leg. He didn’t want me to touch him and he jerked and twisted his agile body away, out of my reach.
Three years ago, Abe was a third grader struggling with social issues while Oscar had just started Kindergarten at the same tiny one hundred-student school. I don’t know if Abe’s grief surfaced that year because his disabled brother had invaded his school and friendships. Or was it because Abe suddenly realized that Oscar’s best Kindergarten buddy Karl was everything Oscar would never be? While Oscar stutters, often has a spaced-out look, and can’t follow the complex social and physical maneuvers required to play team sports, Karl is compassionate, articulate, and a gifted athlete that ignored the unwritten playground rules and inserted himself into the third-graders’ games with Abe’s friends in a way Oscar never could. When I heard the stories of Abe helping Karl join that sports-crazed group I knew Abe saw in Karl the brother he would never have.
I understand this grief, this grief of contrast, of missing what could be rather than appreciating what is. When Oscar was born quiet, blue, and limp, his arms dangling lifelessly at his sides I could only think of Abe’s lusty cry, tight fists and chunky thighs. When Oscar’s tiny mouth couldn’t close tightly around my nipple I could only think of Abe’s insistent suckle. While Abe woke me every two hours to nurse, I woke Oscar to eat. He was too weak to nurse, too sleepy to suck and was tube fed for those first few weeks.
Abe is much calmer, now, having processed his intense feelings in therapy and with me in the last three years. I tell Abe now that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out. Oscar would have had trisomy 15, and those fetuses don’t usually make it to term.
A shadow falls over Abe’s freckled face and he looks up at me from where he is chucking tupperware haphazardly into the cupboard.
"Wow," he says, "That would have been really sad. To not...have him."
After Abe finishes with the dishes and our conversation, I help Oscar settle into bed for the night. At nearly nine years old he is of average height and slim build. He is easily distracted by food but he does not steal. Not yet, I remind myself often, as almost all people with PWS eventually do forage for food. And though Oscar is weaker and slower than his peers, he is stronger than I’d ever imagined possible. He likes to run, scooter, and swing. He learned to ride a two-wheeler bike just a few months ago. He definitely has learning disabilities and areas of cognitive impairment, but he’s also an enthusiastic, hard-working, and well-liked student who reads at grade level and loves math even if he struggles with it.
Oscar climbs into his bottom bunk now and snuggles up next to his crew of eighteen stuffed giraffes. Giraffes are such gentle creatures, graceful despite their awkwardness, a bit like Oscar. He’s been collecting them for five years now, acquiring a few a year from friends and family, and now the herd takes up more than half the width of the bed. He leans over to line them up just right on their special pillow while I read him some math problems that I’ve made up for him. I call it "Zookeeper Math" and there are four word problems on the sheet. We may never get around to actually doing them, but I know he will enjoy hearing them, since he intends to be a zookeeper when he grows up.
This one is his favorite:
Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?
By the time I've read all four word-problems, Oscar is giggling so hard his chin drops to his chest and he falls over on top of his giraffes. When he laughs like this his muscles get really weak and he sometimes even falls to the ground. It’s all part of PWS and doesn’t scare me like it did when I thought he was having seizures. These days I know the sudden weakness is just a sign that he is really enjoying a joke or a story.
I tease him them, "You love your Mama, don't you Oscar? You love your Mama!!"
Oscar keeps laughing, unable to stop, while I pull the covers up over his shoulders and dot his cheeks and forehead with kisses.
Abe is right, I think to myself, my eyes stinging with tears even though I’ve had this thought many times before. It really would be so sad to not have him.
Mary Hill blogs about Prader-Willi syndrome and life with three children (now ages 12, 10, and 6) over at Finding Joy in Simple Things.