This has been a hard year. We’ve had a lot of developmental successes for the kids, epiphanies about their behavior, growing pains emotionally, and some heart crushing realizations. That’s the most I can share without oversharing. It’s been a hard year seems like a pathetic understatement and a bid for sympathy, neither is intended. This life with those on the spectrum is surprising, enlightening, challenging, and heartbreaking all at the same time.
We keep trying to slug it through the best we can and every attempted family outing feels like yet another scientific experiment to test the limits of each of our individual skills at coping and problem solving. It was on the return ride home from one of these mercurial family outings (the ones where you can almost hear the roller coaster gears grinding as the anxiety ratchets up and down throughout) that I began to reflect on what our kids’ behavioral therapist refers to as “the rose, the thorn, and the bud”. Or, as I like to call it, “the good, the bad, and our hopes”.
It seemed like a sure thing, this outing. Owen loves trains. Leonora loves trains. I like trains. Jamie tolerates them. Where could things go wrong?
Funny videos of the kids singing Christmas songs and picking their noses (eating it too) were recorded. Snacks were consumed. Excitement was noted with happy screeching and shouts of “YAY!” during the car ride. Then we arrived.
There was one important, nay I say key, ingredient to this scenario I had not anticipated that Jamie quickly pointed out as we arrived, “Oh, yeah, train freaks.”
I took in the crowd of three hundred people and counted maybe twelve kids amongst them, including our own. Keep in mind this is marketed as a fun holiday train ride with festive ornaments, an offer of taking your picture with Santa, and an entire tent of toys to walk through on your way to waiting in line to board.
Everything about this spelled “kid event” yet the people surrounding us had the irritable dismissiveness of business travelers being told that there was a delay for boarding. I suddenly felt anxious realizing we had just walked into the worst of kid events. The advertised-family-fun-event-meant-for-adults. I mumbled to myself, “I think we can, I think we can…” Jamie looked at me with the merriment of a man waiting for a proctologist.
The kids started to get anxious because: 1. they were staring eye level into the butts of adults and 2. they sensed, much like ourselves, that people like us were unwanted. By us I mean “people not obsessed with trains”.
We did our best to keep them moving in our small spot in line by letting them dance on top of our feet, ride on our shoulders to have a break from their flatulent ozone level, and stuff them with all of the contraband from my oversized mom purse. By the time we reached the train we were stumbling on just hoping for seats together. Other families desperately began the race for the “best” seats. We reached the first car and I grabbed the first set of four seats facing each other next to a west facing window and practically shoved everyone into place.
My smug sense of accomplishment lasted all of five seconds as the train started to move and Owen whimpered, “It not going fast…IT. NOT. GOINGGGGG!”
“Ok, we’re not going fast YET but maybe we’ll go faster and look at this view! We can see the river and the trees – “
Leonora joined in to help, “Yeah, Owen, and they said Santa might come by.”
He sat down and looked slightly mollified but not convinced. He rested his head on his hand and grumbled, “It go slow.” He stood for most of the ride with his chin resting on the sill of the window. I fear that his epitaph will read, “No ride is worth it unless it’s fast.”
Leonora kept her fluffy Santa hat on, snuggled, and tried to sing holiday songs to which Owen shouted, “NO sing-ING!”
Bah Humbug was in full effect.
I had almost forgotten about the advertised “Santa visit” until I heard sleigh bells nearing us and the voice of an elderly man shouting “ho, ho!”. My guts twisted and Jamie and I shot each other the “oh !@%#” face that we’ve exchanged all too often in these events that signals the following: block Owen’s escape, secure your belongings, make sure there’s nothing that can be weaponized, and reassure Leonora that the we’re going to make it through the onslaught.
Santa approached, oblivious to his danger, and bellowed a jovial, “Ho, ho, Merry Christmas!”
Owen stood on his seat and growled. A sudden flash of inspiration came to me.
“Owen?!” he looked over at me warily, “Remember, all the Santas report back to the real one and I KNOW that you want that truck…”
He jumped down, scampered across everyone, and grabbed onto that Santa like he was a buoy in the tumultuous sea. His sweet little face looked at him and said, “Hi Santa!”
The man looked at me with a little concern and leaned down, “Have you been a good little – “
“I WANT MY TRANSPORTER TRUCK, THE BLUE POLICE STATION, and, and…-”
“Wish him a “Merry Christmas”, honey,” I smiled at the Santa and nodded in hopes he understood that this exchange would not end with him being bit.
Owen nodded and took a deep breath as Santa bent back to a standing position, “Merry Christmas, Santa.” The man smiled and stood with Owen and Leonora for a photo.
She looked up at him, “I want my brother to have a sled and I’m ok with a baby doll. I sent you a picture. Oh, sorry, I haven’t sent the letter.”
The man smiled stiffly at us, laughed, and wished us well. Two volunteers offered us candy canes and all hell broke loose. Owen tried to eat it with the wrapper on. Leonora got it stuck to her hands. Allergy-friendly gummy candy was unearthed from my bag which then had to be swapped into an empty bag from Halloween I keep in my purse to serve Owen his portion in. (He thinks all the best candy is Halloween candy. I realized this and saved the empty wrappers to reuse them. Not the most hygienic practice but better than a needless meltdown over semantics.)
The train still didn’t go fast enough for him and we did our best to distract him. He was a trooper and remained withdrawn and staring out the window the rest of the hour long trip. We pointed out the sights and enjoyed quiet moments of gazing out the large window together. Jamie nodded off and I snapped pictures like a deranged tourist.
It became quickly evident afterwards that this was fortunate because to take any afterwards was impossible. The opportunity to stop and do a photo we were trampled by train freaks or shoved by the river of people pushing at us from either side the moment we tried to stop after leaving the train.
I was proud of the kids for holding it together, proud of myself for surviving, and we all were thankful to get back in the car. It was worth the attempt and we just keep trying until we find the few events that work. I would be lying if I said I wasn’t disappointed a bit, that moments like these are hard when so many other families can attend holiday events and never pause to consider so many calamities and sensory issues that we have to be mindful of. Everyone has their challenges with family gatherings but most are still not feasible for us. I’ve given up on trying to explain this to others and simply smile, nod, and move on.
I was withdrawn myself on the ride home. Feeling defeated that it wasn’t a success and hoping that something else might work for all four of us and realizing that it’s probably for the best to stick to the one-on-one outings with the kids like we usually do. Even for the holidays.
Leonora was staring at me in the side mirror and I smiled at her.
“Ok, kids, what was your favorite part of today?” (Remember “the rose, the thorn, and the bud”?)
Owen sighed and looked out the window. Leonora thought about it and said, “Santa!…I liked the train too. I liked all the bridges… and the trees and the river…and (giggle) Santa.”
Owen chimed in, “I want a transporter truck, a blue police station, and candy.”
Jamie and I exchanged glances and I turned to our backseat consumers, “Ok, so if Santa brings you these things that means you’re on the “nice” list. Are you going to try and stay on the “nice” list all year?”
Owen grumbled a “naughty” word and pouted.
I immediately felt bad. Sarcasm and banter are lost on this one. He only hears criticism in even mild teasing. I knew this and shouldn’t have pushed it after him keeping it together on our outing.
“Owen?” He wouldn’t look at me, “We know you deserve to be on the nice list. We’re proud of you. You did great today. I’m sorry I teased you.”
He looked forward finally but wouldn’t look at me. He kept his eyes on his lap. I offered him an applesauce pouch and he perked up. His mouth turned up at the corners as he vacuumed down his baby food pouch and quietly wished me “thanks”. I noticed that his baby dimples were smoothing into big boy cheekbones. His hair was changing and becoming courser with a slight wave. As his sister’s hair darkens his lightens. It’s as if they’re meeting in the middle. Fitting really since their bond is even tighter lately. She checks on him, dotes on him, helps him, consoles him, and snuggles him. My eyes flit as far as they can over my left shoulder at her and see her smiling at me. I reached back and held her hand.
“Owen said a bad word.” Oh, yes, and tells on him. Constantly.
“Leonora, there’s no bad words just misused ones. Owen, are you feeling ok?”
Leonora sighed, clearly unhappy with not having justice served on her traveling companion’s gauf, “But mamaaaaa, he said a BAD word.”
“What did he say?”
“….I, I – can’t SAY it!”
Oh boy, Jamie and I exchange a look and he continues driving.
“Leonora, tell me the first letter of the word.”
She thinks about it and solemnly responds, “It starts with an “f”.”
Jamie and I both swallow a gasp and chuckle instead. Owen becomes indignant and shouts, “I did not!”
“Ok, what did you say then?”
He mumbles, “I say-ed, “I growl.”
I try not to laugh, “You mean about the train disappointing you?”
“Ok, that’s understandable. Leonora, what do you think the “f” word is?”
“I don’t know…”foul”?”
We started laughing and the kids join in as you do when others are laughing. They have plenty of time to learn about the “f” word. There’s always a good reason to use it and lately we have many.
“So “foul” can be used many ways and there’s different spellings but none of the uses are bad. There’s “fowl” for birds you eat. We call that “poultry” but then there’s “foul” for something that smells bad or breaking the rule in a game or even bad behavior.”
I get home and peel sticky bits of candy cane off my purse, unearth wads of used baby wipes, set aside ticket stubs and pamphlets to take photos of and recycle. My feet ache, I’m disappointed that the outing was a let down to Owen, relieved that Leonora liked it ok, and that none of us ran off/were injured/or fully melted down.
Much like the train ride for Owen, we’re taking in the view and waiting for this ride, this phase, to end. It’s been a hard year of extreme highs and lows but the view always changes and the ride will come to end along with this year. It’s best to to enjoy what we can and hope the next phase is better. Here’s hoping the scenery changes for us all and that your holiday season is tolerable if not joyous.