Autism in Banff National Park

We had Bush’s Hickory Smoked Baked Beans last night, and said to Steve, “I feel like we’re eating a campfire.” Because everything in our house now smells like campfire–our tent, sleeping bags, and clothes are all holding the smells of our camping trip hostage.

I love it.

Steve and I went to Banff two years ago, just the two of us. It was Steve’s first “real” trip to Alberta–the province I grew up in. He fell in love instantly. The Canadian Rockies will do that to you.

A few months ago, Steve announced he wanted to do the trip again–this time with the kids. It’s a fourteen hour trip up to Lethbridge, Alberta (where my aunt and uncle live) and another 3 hours or so to Banff. It’s a long way to be away from home if something goes wrong. And we’re camping–neither of us are outdoorsy. It’s a 50/50 shot if we can get a fire going. But honestly my main concern was the bears. I’m talking grizzly bears.

Grizzly bears and two kids–one an autistic kid? Sign me up.

I’ll admit, my need to go back to Alberta this time trumped all other concerns. Even the bear ones. It sounds selfish, but sometimes I get that way. Selfish. We work with autism every day around here and sometimes I just want to do something I want to do. Even if it’s logistically almost impossible, even if it isn’t “autisticly ideal.” So I said yes to the Canadian Rockies trip. For me.

I researched Pintrest for camping hacks. I made a fire starter kit. I bought a mini camping stove. Somehow Steve and I were able to shove 4 sleeping bags, 4 pillows, 4 suitcases, one tent, and all our supplies into the Camry. The kids were squished, but that’s what long car trips are all about, right?

We got into Lethbridge late Saturday night, and spent a couple of days recouping before our big week-long camping trip in the backwoods of Banff. Okay, so it really wasn’t the backwoods, it was a civilized campground surrounded by an electric fence to keep out the bears and we stayed in a hotel every other night, but for our family it was essentially backwoods.

Lethbridge, Alberta

J and my cousin Jessica making cookies. Jessica was amazing with J–even when J was trying to get away with things he shouldn’t she kept him in line and he loved being with her for it.

Then we headed up to Banff. I wondered how this would work for J. I always wonder how things work with J. Sometimes I wish I could crawl into his brain–a real version of Inside Out–is he’s capable of what I expect from him. Am I short changing him? Am I asking for too much? Can he do this?

With some divine intervention (a family willing to let W on their boat at Lake Louise so Steve and I could canoe with J, the downpour of rain waiting until our last night to show up, no bear encounters) and some perseverance by J, it worked. Camping is exhausting. It’s setting up camp, it’s hiking, it’s driving, it’s doing it again at another location. I’m so grateful that J’s getting more flexible with his routine. Things aren’t always perfect and there were a few big meltdowns. Two days in I had to think on the fly the new privileges that would work for our transient lifestyle (I can’t take away the Wii or trampoline while we’re travelling) but s’mores privileges and socks to bed can work just as well 😉

Here are some pictures of our trip:

Lake Louise

J trying out paddling on the canoe. And yes, I was terrified he’d drop it in the lake.

W paddling with the VERY generous family that let her on their boat. The company only allowed two adults and two small children. Both J and W were too heavy to be considered small children.

Marble Canyon (Kootenay National Park)

My little hikers.

Johnston Canyon:

One of J’s favorite places. You hike up to the first set of falls, wait in line to crawl into a small cave to get a spectacular view of the falls.

Top of Whistlers Mountain (Jasper National Park)

I was so proud of him here. J was pretty scared to ride up the tram to the top of the mountain. He kept saying “but it’s on a wire.” When we were let off, you still have to hike quite a ways to the top. The air is REALLY thin and the hike is REALLY steep. He had to take a lot of breaks, but HE MADE IT. He kept saying, “This is just like running” 🙂

Our last day in Banff

It’s been interesting coming back home. I feel like we’ve been gone for months. It’s only been two weeks. The best part is that I feel recharged (which is strange, because of all the work and stress of travelling). It must be the mountain air. And J is really happy. He’s happy to be home in his routine and it’s like he’s matured a little more over the last two weeks. He tells me over and over every day that he loved our trip. He tells me every day that he loves Banff. Sometimes I wonder that if we just remove all the things around us–all the busy stimuli and our responsibilities–and strip down to the basics: food, shelter, human interaction, nature–if we develop ourselves a little more too. If we find a little more of ourselves again.

Oh, and this is everything I love about Alberta:

When Family Can Help You Settle Your Glitter

I feel like the summer is flying by and we’ll be starting school again in no time. I was talking to a co-worker last week and we both decided that the fourth of July is the halfway mark of summer. After that it’s just a fast downhill descent to the beginning of fall semester. That means J will be soon starting grade seven and I’m not ready for that. We’ve got so many things to learn and work on before that happens. We’ve been working on handwriting, but I want that to be at a better place before school starts. We’ve been working on reading comprehension but not as much as I’d like. I had grand plans for writing projects but we’ve only completed one. There’s still so much I want to go over with him.

With all my ambitions for academic rigor, I need to remember that living is part of learning. I keep telling myself this–that there are lessons to learn, opportunities outside of our daily drills of running, piano, handwriting, reading comprehension, and math. It’s really hard; I feel like we’ve been playing catch-up since the toddler years and to give myself permission to let that go for a few weeks is hard. There’s a lot of paranoia being a mom of an autistic child. Every wasted day is a wasted opportunity to rewire the brain. Every change in routine can undo weeks of work, so I repeat this mantra:

Living is learning too.

This week we headed to Kansas City, Missouri and Wichita, Kansas to visit our parents. We were lucky enough to have some siblings meet up with us. I brought along J’s piano books and some “homework” along the way. Sometimes we were able to fit most of his routine in, sometimes just a few things. We’re lucky that J has (mostly) gotten over his insistence on strict scheduling. He prefers to practice piano every day, but when we missed one day it wasn’t the end of the world. Some activities were great–the 10 hours at Worlds of Fun with late lunch and late dinner ended up working out just fine. The trip to the Royals stadium the next night went well initially–until J started thinking about our dog Fred and how much he missed him. By the 8th inning when J announced he was so tired and that ten o’clock was way past his bedtime. The workers of Kauffman stadium got to experience a full twelve year old autistic meltdown. It’s hard to know how to push when you’re out of town, out of your element.

Enjoying the Royals Game (before the meltdown)

Smoke from the Canadian wildfires made it as far south as Kansas City making for a hazy night.

A few days later we headed down to Wichita and visited more family. My sister’s kids were there as well and so W had a good time playing with them. They went to the trampoline park and the Nut House. Overall the whole trip has been a good experience.

Fun with cousins at the trampoline park.

The autism factor is interesting when you’re dealing with family. We live so far away from family that we’re lucky if we see them every six months,and within six months, J changes astronomically. Luckily, family is always willing to learn, support, and enforce the things you’re working on. I explained to everyone: “If he talks about exit signs or spelling words, just tell him that it’s inappropriate and redirect the conversation. He knows it’s inappropriate and he won’t be hurt if you call him on it. If you’re annoyed that he keeps talking on and on about the same thing, it’s okay to tell him to stop. The great thing with J is he’ll keep trying to interact with you until he figures out the right way.” That’s great thing about family is that they’ll back you up, even if they’re uncomfortable or unsure if they’re “doing it right” they’ll still try.

*Bonus points and a shout out to my sister Laura–one day J was having an anxiety attack (because he was overtired from the late fourth of July fireworks). She knew exactly what to do, she pulled him in close to her and started rubbing his back, ignoring all of his anxiety-filled gibberish, while I was able to grab the ipad for a calming app. Sometimes you feel so isolated in this autism journey, and when someone who isn’t by your side every day and doesn’t deal with autism every day is able to give you a hand, it makes all the world of difference.

*The “Settle Your Glitter” app available through iTunes is awesome. And it’s free. Which makes it even more awesome. You can check it out here:

https://itunes.apple.com/us/app/settle-your-glitter/id962467492?mt=8

Room 404 and the Women’s World Cup

We’ll start with room 404, because everyone loves a good hotel story. There’s something about being transient, staying overnight in a strange room where other people have slept just hours before you. Newsmagazines like 20/20 like to go in and investigate with black lights all of the horrors that lie in the bed sheets, walls, and bathrooms. For some reason we like to be thrilled and terrified by hotel rooms.

Growing up, my family had a lot of road trips, and the highlight of every road trip for me and my sister was staying in motels. We loved the creepiness of them. We loved to freak each other out with the “did you hear that?” “did you see that?” at the random gurgles of the running toilets or flash of headlights pulling into the parking lot in front of the room next to us. I remember one night sitting at the edge of a lumpy floral comforter, staying up to watch an episode of Sherlock Holmes on a patchy cable station on our way to our grandparents in Ontario. It was the Adventure of the Speckled Band–the one about the mysterious room in the mansion where they find a person dead and discover that the perpetrator is a adder snake that crawls through the ventilation system to access its victim. Best episode ever for a night in a motel. For the rest of the night my sister and I lay terrified, twitching under the wool sheets waiting for a snake to crawl through the vents. Best motel stay ever.

Unfortunately terrifying never ends up being thrilling for J. It always just stays terrifying. We headed up again to Winnipeg on Friday to watch the Women’s World Cup USA v Sweden match because Steve and W are crazy about soccer. At first it seemed that we could pull off another whirlwind trip up to Winnipeg and to make it easier on us, we decided that this time we’d stay in a hotel and not have to roll into Fargo at 3 am. Everything seemed to be going our way, J cleared the 25 min wait at the border, there was no fighting between J and W in the backseat, Steve and I were relatively calm, despite the fact we realized that we were running late and we still needed to stop at our hotel in downtown Winnipeg before we could eat dinner and loop back to the stadium. It was about 5 min into Winnipeg when J started to get panicky.

J: “We’re staying in a hotel, right?”
Me: “Yes.”
J: “When are we going to the hotel?”
Me: “Right now.”
J: “I want to be there NOW.”
Me: “We will, it’s just a few more miles.”

At this point, J starts hyperventilating in the back seat. I feel his feet kicking the back of my seat and his voice gets higher and higher in pitch as his sister, W tries to calm him down.

J: “We’re here, we’re at the hotel!”
Steve: “We’re almost there. It’s on Smith St. Can you help me find Smith St?”

At every intersection J yells, “Stop the car, we’re here, we’re at Smith St.”

All this is happening while Steve and I are trying to navigate downtown Winnipeg–the one ways, the funky intersections, the driving lanes that all of a sudden turn into side street parking and you have to switch lanes last second, eyes scanning frantically for Smith street. The entire car is a shaken up pop bottle just waiting to explode.

J is crying in the back seat: “My head hurts, my stomach hurts.”

And then I realize J is having a panic attack and I suddenly realize why he needs to get to the hotel now.

J has number phobias–right now it’s the number 142. He collects bad numbers in his brain and likes to let them stew in anxiety until they’re absolutely perfectly tainted and some sort of catastrophic event is going to occur if that number pops up. I’m not sure if it’s the autism, the anxiety, obsessive compulsive disorder. At this point it doesn’t matter. This isn’t the imaginary snake in the room that’s thrilling and terrifying. This is the number 142 we’re talking about and to J is just terrifying.

I know exactly what the problem is, and I can’t do anything about it.

“What number is it? What number are we staying in?” J yells between sobs.

“I don’t know,” I say, “It doesn’t matter. It’s just a number.”

J: “What number is it!” he shrieks.

There are ways to talk through anxiety, things I should be doing but I don’t remember right now and I don’t care. I’ve been in the car for 3 hours. I’m a little stressed out right now.

“I don’t know,” I yell back, “It’s just a stupid number. You have to learn to just get over it. It’s just a number. Get over it!”

I know. Not my finest parenting moment. And with everything I’ve read about parenting anxiety, it’s probably one of the worst things to say to someone with anxiety: just get over it. I’m not a person who has chronic anxiety. Yes, I have my stress out moments like right now in the car, but real anxiety doesn’t make sense to me. I’ve had this discussion with J’s therapist before. He’s explained to me that anxiety doesn’t make sense. That’s it’s a faulty switch in the brain that makes the brain go into fight or flight mode over (seemingly) non threatening stimuli. To J, it makes total sense to him.

By the time we pull into the parking lot, J is jumping out the car. Steve and I barely have time to process what kind of place we’ve checked into, since there is a security officer patrolling the lot and it IS downtown and it was the last available room in Winnipeg and there are a lot of random people just loitering. We quickly catch up to J and head inside. J beats us to the lobby desk and on his tiptoes (it’s a really tall desk) leans over to the man in a ponytail and practically yells at the man, “What number is it!”

“Hey,” Steve says, “We just came in from Fargo, and we just want to check in.”

I say a silent prayer to myself that we are not staying in #142.

“Room 404,” the man says, sliding the keys to Steve. “You can take the elevator or stairs.”

“304?” J says–this is his trick. He’s still revved up on anxiety and changing things makes him feel like he’s in control when he feels so out of control.

“You know it’s 404,” Steve says to J. “And this number’s just fine.”

After we unload our car and wave goodbye to the security officer, we head to the stadium. J is still revved, but he’s starting to calm down. In fact, by the time we make it to the stadium, he’s exhausted.

Somehow we made it to the stadium on time. Somehow we survived the game–buying $12 worth of water bottles (at $3 bucks a piece) because that’s all the Canadian cash I had on me. J wanted mini donuts but he handled just having water. The poor kids was exhausted. For most of the game, he lay in Steve’s lap as we all cooked in the sun. W had a blast. We sat by some good friends of ours from Fargo and W loved sitting by her BFF. She got into all the crowd chants. She loved picking out the plays and the “bad calls” along with the people who sat behind us (whose American flags kept flapping at the back of my head. I kept thinking I was having beer spilled on me). I’m glad she had a good time.

It sounds a little dramatic. Lots of times things in the Beck family end up being a little dramatic. A lot of that is because of the autism. But I would go back and do this trip all over again. Just because it can be stressful doesn’t mean that we shut down life and hide out at home. W needs these experiences. J needs these experiences. Steve and I need to get out and have a life too.

It’s all part of trying to navigate real life. Meltdowns included.

Bringing Autism to a Rock Concert

I should start off by saying that there probably isn’t one right way of doing this. In fact, initially, we weren’t sure if there was any real way of doing this. If you do the math, taking J to see Imagine Dragons looked like this:

autism + travel 3 hours to Winnipeg + alternative rock concert late at night = pure insanity

So we decided to go ahead and buy 4 tickets despite of all that. YOLO, right?

We were banking on a few things. This was Imagine Dragons. J is absolutely obsessed with Imagine Dragons, so there was a chance it might work. And J is fresh off his first year of middle school so we have maturity (HA! sort of) on our side. J’s always up for a car trip, so the three hours to Winnipeg wouldn’t be a problem.

But there are plenty of potential “hiccups” when it comes to autism, and the fact that we would be technically out of the country if any meltdowns occurred and hours from home was a little unnerving to both me and Steve. You just can’t turn back and go home after 5 min of a failed attempted when it’s three hours back to Fargo. As Steve’s dad would say, we were “working without a net ladies and gentleman.”

These were the potential anxiety hot spots we anticipated:

1. Crossing the border

2. Waiting. Waiting through the first act. Waiting for the right song to come on.

3. The Sensory Overload Extravaganza of strobe lights, lasers, smoke machines, 120 decibels of distorted sound, and much, much, more.

Crossing the Border: We checked the wait times at the Pembina/Emerson border online the hour before we left. When we left at 2 pm the wait time was 40 min. This was bad news. 40 min to wait in a parked car was 40 min to fuel anxiety for the rest of the night. I couldn’t think of anything but, “If any meltdowns happened while we are waiting or talking to the border patrol I will take away all privileges and turn the car back to Fargo.” You know, your standard parenting threat. J was motivated. He didn’t want to lose privileges or the concert and told me he would have no problems. Luckily, by the time we got to the Pembina crossing there was no wait. First hot spot averted.

Waiting: Steve and I have been to enough concerts to know that even though your ticket might not say it, there is ALWAYS AN OPENING ACT. The concert tickets stated that the concert started at 7, so we timed our departure from Fargo to get to the MTS Centre around 7:30 ish to catch the tail end of the opening act and make sure we were there at the start of the Imagine Dragons opening number. Once we crossed the border, we heard via a radio station that the opening act would end at 8:15. Steve and I quickly changed our strategy. We would eat dinner, hang out, and take a walk around the Forks to kill time and then show up at the MTS Centre around 8:15. J is a clock Nazi, so he soon discovered our change in schedule, but conceded that it was “just a glitch” (thank you SLP Amy and Social Thinking jargon) and he was fine to eat at the Forks. However, when we arrived at the MTS Centre at 8:00, the ticket scanners told us there was ANOTHER opening act and that Imagine Dragons wouldn’t be on until 9:30. Another “glitch.” We tried walking around the MTS Centre downtown, but if you know Winnipeg nothing is open after 8:00 pm. The only thing open was Dollarama. We bought J a $3 hat. We killed some more time. Finally at 9:30 we were in our seats ready for the show to start.

Sensory Overload: I tried to prepare J for this a few short days before the concert. Most kids with autism benefit with knowing exactly what is going to happen before it happens. Unfortunately, with J this backfires. You have to find that sweet spot where you give enough info but not too much (and not too far in advance–his anxiety will have a heyday discovering everything that will go wrong if he knows too much). I YouTubed pirated cellphone recordings of Imagine Dragons concerts. Thank you YouTube user XE53 for your recording of the 2014 Seattle, Washington concert. J was able to see all of the pyrotechnics and poor audio in all its glory in anticipation for the real concert. I explained to him that the concert would be very loud, have lots of flashing lights, and maybe fireworks. I told him it would be fun and asked him if all of the lights and sound would be okay. He told me it would be “just fine” so we decided to bring his sound reduction headphones, “just in case.”

At around 9, we sat through the last few songs of Metric, the very last opening act. It was a warm-up–a test for us. J closed his eyes tight during the first few sets of strobe lights and I thought, “this is it–we’re headed home,” but his eyes flickered open. By the time Imagine Dragons opened with “Shots” J’s nervous system, J’s anxiety seemed to settle down. For the first time since 2pm, I felt I could settle down and just be there in the moment too.

I’m so glad we risked it. The tickets, the time, the travel. You never know what will happen with autism. You can plan everything right, and everything can still go wrong. The look on J’s face was just priceless when his favorite songs came on. It’s an enormously powerful experience attending a live concert. You feel the music in an entirely different way. It was exciting for us to see J experience that.  We made it to the second to last song (nearing 11:00 pm), when J said he was done. A total success for the Beck history books.

Today J woke up at noon, singing the lyrics to “Shots” to himself and announced to everyone with great enthusiasm, “I’m awake and I’m okay.”

Glad to hear J. I’m glad we all made it through last night.