I know more people than I can count who mark each Christmas with a photo of their (perfectly developing) kids. In some cases these (perfectly developing) kids are arranged in the same order sitting on a set of stairs (the youngest at the bottom, the eldest at the top, and of course the middle ones in the middle, if there are any.) Always in the same order left to right, and while not in exactly the same clothes each year, usually the colors are thematically consistent annum to annum.
In other cases they’re photos of the kids in their seasonal finest. Over time the girls range from achingly innocent to unsettlingly adult, while the boys evolve from angelic to mischievous to athletic or geeky or maybe board room prospect—the kind of guys I used to date.
I’m not fond of these yearly updates, because they make me grieve for everything my twin sons with autism are not, and most likely never will be. I admit it: I’m envious. And now that I’m in my fifties, I’m getting the pictures of the grandkids. Grandkids! People I went to high school and college with are grandparents! When I think of these former classmates, they are agelessly youthful in my mind, still poised with endless potential. I remember silly conversations about the future with my best friend Kathy. Kathy and I were close from grade 8 until we each got married, when we moved to opposite ends of the east coast with our new husbands; she to Cape Cod, where she still lives, and me to the sea aboard Arabella, the 38’ ketch Steve and I bought for our first home, ranging from Maine to the Bahamas. Kathy and I shared a dorm room for two out of four years at Framingham State College, which, if you’ve ever been college roommates, allows for some interesting conversations.
“I can see you now when you’re old,” Kathy said.
“What.”
“You’ll be sixty years old, still drying your hair over the side of your head.”
I’d read in Glamour that if you used these new hair blow dryer things it burned your hair till it became straw and maybe fell out, so I let my long hair dry naturally–but to add volume, I brushed it as it dried, first over on one side of my head, and then the other. My hair was thick, so this took an hour or two. Whatever. I had to study anyway. English majors had a lot of books to read.
“And you’ll still be wearing t-shirts and jeans all the time.”
For the record, I still dry my hair this way—for a while, anyway, but now that I’m a Busy Woman I do finish it off with a blow dryer once it’s well on its way. This process can drive Steve crazy. We listen to the Daily Audio Bible together each morning after I’ve showered but before it’s blow-dry time. Steve helps me stay on track so I’m not late for work.
“Don’t you need to dry?” he’ll say somewhere after the Old Testament and the New Testament, but before Psalms and Proverbs. Where in there depends a lot on how long the Old Testament reading is for that day.
I’ll feel my hair. “Nope. It’s too wet to dry.” Steve doesn’t get it, but after 34 years he’s learned not to ask.
I still wear jeans when I can, but like in my Mom’s day when it was taboo to wear white after Labor Day, today it’s considered unseemly for women beyond a Certain Age to wear t-shirts with sayings on them. So I’ve switched to more age appropriate tops that go with jeans, which of course pretty much go with anything for dress-down occasions.
And now I get these photos each year from old and new friends made across the decades, which, over the last twenty years, now make me sad. Sad for me. I wish I could say I’m happy for everyone else, and somewhere deep inside I suppose I am. But at the top, it cuts. I can’t help but wonder, “If it wasn’t for the autism, what kind of people would Jason and Josh be?” And now, “I will never be a grandmother.” When we figured we’d be endlessly young, the thought of never being a grandmother never entered my mind, one way or another. I guess I thought well, it will just happen, in that conveyer belt of life, but I never gave it any thought, and I certainly never figured I’d care about it.
I usually toss the photos, but I put the cards on the fireplace mantle as a kind of collection. I’m always fascinated to see how many cards we’ll get each season, since I have never—ever—been a Christmas card sender. Sending us a Christmas card is like buying a lottery ticket. You’ll never get a payoff, but have fun with it.
This past Thanksgiving—the one we just had—I boycotted it. It’s been a busy year of job changes and learning how to be parents of two young adults with autism, and as I watched November 26 creep closer and closer on the calendar this year, I just couldn’t bring myself to jump into it. I hosted Thanksgiving for various parts of our family for 18 of the last 19 years, since my Mom died. There’s a lot that goes into that under normal conditions. Throw two kids with autism into the mix, and it’s unbelievably complex. Not so much the cooking stuff (although the cleanup is impressive), but the emotions. Any family gathering can be emotionally provocative. Add two kids with autism who have no connection to or interest in holidays, and you find these are equal opportunity “act out” occasions, regardless of our perfect plans and preparations. Which just makes all that hard work for naught, and makes me pour another glass of wine that I swore I’d have none of since it’s nothing but empty calories.
That said, I do think of holidays past this time each year—an over-the-shoulder glance at the conveyer belt behind us, kind of to see if those pre-autism events ever really happened. The first Thanksgiving aboard Arabella on The Great Escape, we anchored amongst other yachtie snow birds in West Palm Beach. My first Thanksgiving among palm trees, New England girl that I am. We’d been motor-sailing down the Intracoastal Waterway for several weeks, so our provisions were low. There was no place to land the dinghy, so I rowed Steve to a sea wall that looked like it was part of town property. Steve was in stringy cut-offs, long hair and at least three days’ growth of beard. He carried a hand-held radio he could call me with when he wanted to be picked up.
Turns out the seawall and the property beyond belonged to a convent. I kid you not. By this time I was rowing back to the boat, so Steve had no choice but to tresspass the convent and try to get to the road without getting arrested. Looking the part, he pretended he was an undercover cop in pursuit of an arms dealer, taking cover behind saintly statuary, speaking covertly into the handheld, and eventually crashing through a hedge onto the sidewalk.
The liquor store was not impressed with Steve’s appearance. A clerk made a hushed phone call, and a few minutes later a police cruiser pulled up, providing two cops to trail Steve as he (all evidence to the contrary) debated between Mouton-Cadet Blanc and a Beringer Pinot Noir.
In the end we had a delightful, quiet Thanksgiving aboard. There was a 12 lb turkey prepared in our Force 10 propane marine stove, with stuffing and mashed potatoes and gravy. Steve caught and filleted two fish for our cats, and we watched the sun set over Old Port Cove.
Probably my other favorite Thanksgiving took place when the kids were around six. My dad, sister, brother and sister-in-law came up from Massachusetts. We prepared an enormous turkey, and I had a rib eye steak I’d bought but had yet to cook. I figured this would be the day, since we were grilling some vegetables on the deck anyway.
“Who wants steak?” I asked, figuring we’d cook it to order.
“Me! Me! Me! Me!” And truth be told, that steak looked pretty good to me too. What to do? One steak, 6 hungry eaters. There was only one thing to do. It was pushing noon, and I knew Burgess’ Market—best beef in town! and the only store open on Thanksgiving—closed at 1. My sister and I dashed into Bath and were literally the last customers let into the door before it was locked. We bought $75 worth of top-of-the-line beef, and so the First Annual Turkey Revolt was born. Steve and I had turkey leftovers for a month.
So you can see it was well within my DNA to boycott Thanksgiving this year, given the history of the Revolt. It was time. I was tired. Josh was in his group home, and Jason would enjoy the holiday in his apartment in complete isolation, as has been his desire and tradition since he moved out three years ago. The only thing that’s changed for Jason over these three years has been that the first year he fixed his own Thanksgiving feast. Now he prefers Mom and Dad to bring it cooked and ready to go, preferably around noon time. I figured I’d sleep late, throw the turkey in the oven, mix up some Stove Top and Ore-Ida mashed potatoes, and call it good. My sister was in Texas, so I broke the news to Dad, who took it well. He promised his day would not be a TV dinner in front of Mayberry RFD (the latter of which actually sounded pretty good to him), so I cleared my mind of any thoughts of planning a holiday.
The first thing that went wrong on Thanksgiving was I woke up sick. I guess I should say sicker, because I’d been fighting a cold for a few days, no doubt caught from Steve, who’d been sick for a week. I had a sore throat and a stuffy nose, and a head that felt like a ton of bricks. Still, I didn’t want to be a spoil sport, so I took some cold medicine and we proceeded to prepare the meal for ourselves and Jason’s delivery.
We arrived with Jay’s care packaged as promised at noon. I knocked on the door, but there was no answer. Funny. I could swear I heard his voice. I tried the door. It was unlocked. Hmm. That’s odd. I could feel my anxiety rising.
“Jay?” We looked through the three-room apartment. Nothing. I called his phone—and heard it ring. It was on the kitchen counter. Oh my gosh, Jay never goes anywhere without his phone. And his keys—his keys were still there!
We panicked. All kinds of dire possibilities ran through us. He must have been abducted. Abducted? The kid is 6 feet tall, weighs 220 pounds and has a black belt in Tae Kwon Do. He lives in a secure building with the elderly and disabled. Who would abduct him?
I was sure I heard his voice. Steve told me to stay in the apartment in case Jason came back; he went to check outside. Nothing. My head was pounding. My poor baby, where are you? What’s wrong?
I was one step from calling the police, when we thought to knock on the neighbor’s door. Miss Sandy is an elderly woman who lives in the only other apartment on Jason’s street-level floor, which also houses the Community Room and the laundry facilities.
No answer, but I heard something inside. “Miss Sandy?” Finally I could hear her coming, wheeling to the door in her wheelchair.
“Oh, hi!” She pointed behind her, and there was Jay. Jay shaking. Jay nervous. Jay with furtive eye gaze, repeating phrases like “true,” which he does when he’s “off.” Good Lord, what was happening??
Well, at least we knew Jason was okay. That was Job One. At least we could work the problem now. Thank God.
At first Jason didn’t want to leave. “I’ve never seen him like this,” Miss Sandy said. We had, but not in a long, long time. When Jason escalates, he eventually lands in a place of non-compliance, and we were skirting that edge. We’ll end up calling the police anyway, I thought, but to help contain him.
The other thing that escalates Jason when things go wrong is being hangry. If you haven’t seen the Snickers ad, hangry is when you get angry because you’re hungry. Once introduced to the concept, we realized that Jason does struggle more with life’s little mishaps if he is concurrently hungry, so much so that we’ve taught him that about himself, and to ensure he has something (healthy) inside him throughout the day. It being Thanksgiving, however, Jason probably skipped breakfast, and here we were at lunchtime. But something else must have happened. Hungry by itself doesn’t provoke Jason unless something else is going on.
“I think he’s lonely,” Miss Sandy whispered. Lonely? Lonely? The kid who hid in his room when the relatives were over, the young adult who advised us three years running in no uncertain terms that he did not want to come to his “childhood home” for Thanksgiving, but wanted to do the entire event “independently?” This individual with autism who has wanted little to do with anyone else for 22 years was lonely?
He was lonely! Steve slowly talked Jason into a calmer place, and operating on the hypothesis that Jason was indeed lonely, we got him to come with us to our home. Jason spent the afternoon wandering through our house touching base with different rooms, checking out books that were his he might, after all, want to have in his apartment, and (I suspect), seeing if he could save a little on his grocery bill by absconding with the shampoo that mysteriously disappeared (something I did when I came home from college 😉 We loved on him and laughed with him, and suddenly I thought—My boy has come to visit on Thanksgiving! He’s lonely! He loves us!
I remember feeling this way once before. Jason didn’t start to talk until he was 8 and a half. Eventually the words came out, but it was pretty basic stuff. I want this, that’s a (whatever), twinkle twinkle little star. No conversations, nothing complex, but at least it was vocal.
Then one day he lied. Joy to the world, my little one told a bold-faced lie. “Joshua drank all the juice,” Jay said. I knew for a fact Jason had finished it, because I watched him. I was in the same room with Jason when he did it, but Jason didn’t seem to think that was relevant. But that didn’t matter. In terms of higher-order thinking related to the mystery of speech, my previously non-verbal son managed to assemble a sentence, weigh it against reality, fabricate an alternate reality, and initiate it as an important thing to communicate. My son could lie!!! Yippeee!!
And now, he was lonely. Thank you God.
Growth continues in adults with autism, as it does with all of us. Since Thanksgiving, we’ve talked to Jason a lot about loneliness: what it means, what it might feel like, how to prevent it, and what to do when it comes along anyway. He’s learning. Yesterday Jason called just to say he was feeling better, after a minor injury at work. He’s never appeared to have the “theory of mind” that other people might be worried about him, and that he could alleviate that worry by reaching out. What an amazingly “normal” thing to do.
I adore my boys. I accept them for who they are, but watch with fascination every step of continued change and growth, even now that they are adults.
I never thought I’d say this, but—Hooray for loneliness! Maybe there will be a grandkid or two someday after all.