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This Was Not In The Brochure

Melissa McKay

    My son loves Legos, Pixar movies, and Minions. His favorite book is The Very Hungry Caterpillar, and he has heard or read it so many times, he can recite it from memory. At the dinner table, he sits on his haunches with his knees tucked under his chin. My son runs everywhere he goes. He burps loudly in public, and we have to remind him to use his manners. When friends or family come to visit, he grins from ear to ear while showing off his latest artwork or Lego creation. He LOVES to sing, in particular, songs from VeggieTales videos. (Side note: For those who’ve never had the privilege of viewing, VeggieTales is a cartoon featuring talking vegetables that present Bible stories in a humorous and kid-friendly format. It’s as goofy as it sounds. The musical numbers, though silly, are quite catchy. But I digress.) He plays these videos on the computer and sings “Oh wheeeeeeeere is my hairbrush?” as loud as he can, ad nauseam. He sounds like a typical little boy...only he’s not. My son is six feet tall, twenty one years old, and autistic.
    A couple of weeks ago, my husband, son, and I helped our daughter move into the dorm for her first year of college. She is the younger of our two children. If I mention something about my kids to people I’ve just met or customers at work, conversations go something like this:
    THEM: So you’ve got kids? How many?
    ME: Two. An eighteen-year-old daughter and twenty-one-year-old son.
    THEM: Oh wow! Both in school?
    ME: Yes.
    THEM: So you’re an empty-nester!
    ME: Well, not exactlyÉ
    This is where the conversation gets complicated. It is true that both children are in school, but while our youngest has moved onto a college campus, our adult son has one more year of high school. For years we pretended that he would obtain a college education, until that day as a twelve-year-old we thought it was safe to leave him outside for a while to ride laps around the house on his bicycle and he wandered away. We called 911 and endured mind-numbing terror for the longest 90 minutes of my life, as the police searched for him. He was found when drivers on I-65 called 911 to report a kid driving his bicycle against traffic along the concrete barrier that divided the north and south lanes. Five lanes of northbound traffic were stopped so the police could safely rescue him. In one afternoon, we went from the “college track” to survival mode. We could no longer ignore this truth: Watering down facts about ancient Mesopotamian culture so he could get a barely passable grade was a waste of energy, if our son couldn’t grasp the concept of how dangerous it was to cruise down the interstate on his bike among traffic moving at 70 miles an hour. We agreed with teachers that the time had come to switch our son to a life skills curriculum.
    The months leading up to and after my son’s high school graduation put me in an emotional tailspin. It was exhausting to provide answers for all of the questions. “Will he graduate with his class? Will he go to college? Will he get a job? What kind of job does he want to pursue? Will he live at home with you, or do you think he will ever be able to live on his own?” I was also asked, “How does it feel now that Pierce is a senior?” My response most often was, “It’s weird”. That was all I could come up with. How do you describe a situation where everything changes yet simultaneously stays the same? We went through the motions with all of his senior friends, pretending that he was on to new and exciting things just like the rest of them. But I couldn’t deny the fact that our son’s future won’t be the same as everyone else’s. Part of me was filled with pride as we watched him walk across the stage in his cap and gown and receive his diploma, knowing how hard ALL of us had worked to get him to that point. An even larger part of me was overcome with despair, because just three months later, while his friends packed their cars and drove away to college, our son would be hitching a ride with his little sister back to the high school he’d just graduated from. He would be learning essential life skills like grocery shopping, laundry, personal care, and handling finances, then ride the school bus home. As his friends moved into dorm rooms, some far from home, he’d be living with his parents, sleeping in his childhood bedroom that’s filled with Legos, children’s books, and Disney toys, where he “wakes up” his model WALL-E robot every single morning, then shuts him back down before getting in bed every single night. The guys in our church’s youth group, boys that he’d grown up with, wouldn’t be around to watch Marvel movies with him and play games at church camp. Our son would still be at church, too old for the youth group, yet having nothing at all in common with the 20-somethings in the young adult ministry. While his friends started a new chapter, we’d arrived at a comma in the sentence.
    A few months ago, a judge decided that it was in our son’s best interest that my husband and I be granted conservatorship. There it is, in black and white; the proof that our adult son is incapable of making financial, housing, transportation, and healthcare decisions. The court document doesn’t change anything, really. We’ve been navigating through this wild ride for two decades. He’ll never move out to live in his own apartment, though we haven’t dismissed the possibility of a group home or assisted living. There have been many, many downs, but there have also been many triumphs. When our son achieves something wonderful, like a first place ribbon in a Special Olympics race or earning an internship at our local hospital in food service, I blast it all over on social media, as you do when you’re a proud mom. My husband and I are heaped with praise: “You’re such a great mom!” “You and your husband are wonderful parents!” I even get the “God knew just what he was doing by giving YOU a kid as special as your son.” (I try not to visibly cringe over that last one.) If I’m being honest, we’re just making this up as we go along. Far from feeling like a parenting genius, or chosen by God because He believes I am better equipped than other parents to raise a child with special needs (nonsense), I’m just thankful that we’ve managed to keep our son from the brink of death. There are millions of moms like me who can say, “Um, I’m sorry, but this wasn’t in the brochure.” We get some goggles to adjust to this change in our vision of parenting, and we just keep doing the next right thing. We make course corrections every time a new obstacle appears. We screw up and learn what not to do ever again. We yell “PLEASE STOP!” after the same word, sentence or song has been repeated on a non-stop loop for fifteen minutes. We celebrate the minute victories that are few and far between. We collapse in exhausted relief at the end of the day that we are all still alive, speaking to each other (most days), and somewhat sane.

 

This was accepted for publication in the Winter 2019 release of “Anti Heroin Chic”.

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