The Standard Procedures of Getting Dressed

For weeks I’ve been trying to figure out how to teach J to pay more attention when getting dressed. Too many mornings he’ll come down with his shirt inside out. Workout shorts on backwards. He always has one sock on the right way and one on upside down. Our camping trip to Banff and Jasper was really the last straw for me on this. He would dress in the tent only to come out looking like a mismatched hobo (to be fair we were wearing grungy camping clothes). It was such a pain to have him go back in the tent to “fix it.” Or worse, his left sock would be slipping off his foot because he put it on upside down and so we would have to pull his shoes of and fix it for him before the start of a hike. He honestly has no clue when he messes these things up. And he gets really embarrassed and frustrated when he as to “fix it.”

For days after our trip I couldn’t figure out the best way of going about this. Telling him his shirt was inside out didn’t do anything. Telling him his shirt was on backwards didn’t do anything. In fact, he seemed even more confused as to what to do. I’d show him a pair of underwear and say “Look, this is the front of the underwear” and he’d still come out with it on backwards. This clearly wasn’t a motor skills issue. He can button and zip and snap anything on his clothes (it’s not naturally easy; years of OT has helped with this). I started realizing that this was almost a proprioceptive issue–almost a deficit between his mind and body–or outside objects and their relation to his body. Front and back. Inside and out. Years ago he had the same problem with prepositions. He didn’t know what I meant by putting the book, “on, over, under” the table. He didn’t know where those words were in relation to him.

I decided to use his anchor chart for this. (Yes he has an anchor chart nailed onto his wall in his bedroom). And I decided to just tackle the “backwards” issues and leave the “inside out” issues for later. I also wanted as little words as possible. Verbal commands just seemed more confusing and frustrating for him. I also wanted to make sure he was more mindful in dressing. Too often he’s in such a rush to get dressed and get going he doesn’t check the mirror when he leaves the room. This is what I came up with:

I would never have thought in a million years that I would be spending late nights as a parent drawing skivvies on outlines of human bodies.

Forgive my lack of artistic ability. Even with a google searched and printed outline of a human body I can’t make this human look human. Ken doll hair. Spandex yoga pants. I chose to make a dotted line for a tag with the word “tag.” So many shirts now have no tags and just writing on the shirt where the tag is supposed to be–probably as a result of a lot of kids having sensory issues over tags 😉

Once again I was going for minimal words. I changed the directional words to “top” and “bottom.”

So far it’s great. J is really self-conscious about privacy right now (which is great–at this age he should be) so this lets him figure it out himself without me watching over him. It’s really funny. He’ll spend a good 8-10 minutes getting dressed now and I know he’s really trying to figure out the chart and how he translates that to himself.

Every morning now everything is on the right way! Sometimes we still get an inside out shirt, but the tags are in the back! When he gets this down more efficiency, then I’ll have to brainstorm a way for “inside out and right-side out.”

Maybe this will make school mornings a little less stressful and easier. But for now, let’s just live up what’s left of summer.

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:

What’s on our iPad: Reading Comprehension Edition

I used to think that we are all inherently good or bad at things. But after hearing Temple Grandin speak in Fargo a few years ago explain her strengths and weaknesses in math (how she was terrible at algebra and fantastic at geometry), it made me see “subjects” and “challenges” in a whole new way, and it helped me understand J a little bit better.

J is an amazing speller–he always has been. Before he could really talk, he could spell words, not just easy words like “cat” and “dog.” He could spell “dinosaur” and “Hy-Vee-Food & Drug” and “Old Navy” and “octagon.” When he was three. He loves grammar and usage–so much that he will take a pen and scribble out the misspelled words and bad grammar on Mac and Cheese boxes or other “poor English/cutesy English” marketed items. He loves the thesaurus and homophones and antonyms and palindromes. He will kick your trash at Scrabble.

But he is absolutely terrible at reading comprehension. Since he doesn’t cooperate with state testing, and since we’ve never gotten an “accurate” reading on his strengths and weaknesses (mostly because he doesn’t want to do the test and he’ll guess random letters like A, D, D, C just to get the test done), I’ve been trying to pinpoint a little better where his strengths and weakness are. I found a few websites for practice Common Core test prep and we’ve done a practice test almost every day this past month. I started at grade 2 just to gauge where J is using this test website: prepdog.org.

The questions are shorter, and it allows him to develop better test taking skills. The tests aren’t good but not perfect. There are some spelling mistakes (which J is quick to point out). Sometimes there are really badly worded questions, but by going through this, I realized that standardized testing might not be as evil as I once thought. It’s allowed me to notice trends in J’s strengths. Believe it or not, he focuses on feelings in the story (at grade 2 this is pretty easy to find in the text). I’m guessing because he’s had so much therapy on that. He does really well at short paragraphs with once central idea–something I wasn’t sure he was able to do. He DOES NOT know the difference between fact and opinion. He CANNOT make very good inferences. He has a hard time with sequences and steps (what did Jimmy do before he picked up the pen).

By serendipitous luck, I stumbled on these great reading comprehension apps for J, and they’ve been really good for him. They target specific areas of reading comprehension: fact v opinion, inferences, main ideas, etc. As I’m learning more and more with J, we have to teach him the pieces of the puzzle first before he can put it all together. I really love these apps for J.  I’ve learned through trial and error what apps work best, the most important being no “games.” No “cutesy characters” or bells and whistles. He loses all focus on the assignment and will start perseverating on the games. Second, no repetitive, predictable programing. He figures that out really quickly and starts to fixate on the patterns and then will perseverate on the program itself and not the content. Scholastic’s Read 180 is terrible for him because of the repetitive, predictable nature of it. He likes to get things wrong on purpose because the computer will talk back to him every time.

There is very little repetition in these apps. They will ask you to read the same passages or sentences again, but every time they ask you a different question about the passage. Which is great! Because J actually has to read the question and think about it instead of memorizing the answer after the first time. I love it from an English perspective because it shows you that you can read the same passage multiple times and get different things out of it every time. It was so funny to see the look on J’s face when he figured out that the same sentence could mean different things 🙂 Here are some of the screen shots of the various apps. We’re still at the beginner levels because that’s where he’s at comprehension-wise. But I know over the next couple of months he’ll figure it out pretty quickly. They might not be for every kid with autism, but they’ve been sure working well for J.

The apps are by Janine Toole (here). We started by the free downloads.

Here are some screen shots of each individual app:

WH2

Fact Opinion

Inference Ace

Inference Clues

Main Idea Sentences

We don’t solely rely on the apps for reading practice, of course. We still read a novel together every day. I still print off the prepdog tests so he can practice a test on paper. Just one more tool in our arsenal of learning.

What reading apps or reading strategies do you like?

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

Working With the Handwriting Enigma

Through the last few months of school, I’ve been itching to work on J’s handwriting problems. With school going on, I couldn’t squeeze in the time or afford another homework battle when we had so many other things to do. Ever since he was three years old, J’s worked with an OT on his fine and gross motor skills. At three years old, he had already started Handwriting Without Tears (http://www.hwtears.com/hwt). He loves handwriting. He’s the only kid his age that I know who actually chooses cursive over printing. In fact, when I have my college students write in-class assignments, every single assignment comes back to me printed. Printed. Apparently kids these days don’t use cursive anymore.

J wasn’t always terrible at handwriting and printing. In fact, he was amazing. He entered kindergarten already knowing upper and lower case letters. Because he could print, we could get into his mind in ways we couldn’t through his speech because he’s much better at expressing himself through writing than he is through speaking.

Here is a sample of J’s printing right when he started kindergarten.

(This is J expressing his anxiety over light switches, shortly after our move to Fargo. It looks big, but it’s actually on a note card)

Printing and writing are a way he can process the world around him. Here is a map he drew of our neighborhood, including circles for Christmas lights and flags.

(This is about grade one or 7-8 years old)

This is J’s writing today. I don’t know what happened. I don’t know if he needed daily practice on his writing skills, or just trying to keep up with new concepts in class was too much combined with the fine motor skills required for printing/handwriting, but his writing just exploded–literally–all over the page. And I’ve noticed in the last year or two it’s gotten worse and worse:

Copying out one definition

Word on top of words

Teachers tell me over and over that handwriting doesn’t matter anymore. That kids type everything now, and that J will be just fine (he can type more wpm than me). But I don’t buy it. There is much more to writing than just writing words down. Handwriting plays a crucial role in our lives. It forces us to synthesize information when we write it down (because we can’t write nearly as fast as we can type), while we tend to type things verbatim on the computer. Studies are finding our brains retain information better when we write things down than when we type them. http://www.npr.org/2015/05/27/408794237/in-a-digital-chapter-paper-notebooks-are-as-relevant-as-ever

J’s not developmentally at the point he can synthesize information, but he needs to write. The last two months of this school year I realized it was the only way he could study and remember his social studies words (like Peloponnesian Wars, Delian League, Pericles, etc). It’s like his brain needed to feel the words through his pencil in order to retain them.

And then there’s math:

He doesn’t even have enough room to complete the next step

Handwriting requires visual spatial planning. J is really good at math, he knows every single step in answering an equation, but won’t get it right unless he dictates the steps and numbers to a para educator. In fact he’ll get it wrong every single time on his own because he can’t line things up.

So yeah, I’m going to say handwriting is pretty important to this kid.

Ever since school has been out, J and I practice handwriting every single day. He’s done it in the past, I know he can do it again. About a month before school was out, one of J’s paras ordered printing paper for him (like he had back in elementary school), he seemed to get the hang of it pretty quickly again. Math was still a problem. We’ve tried grid paper in the past, but it was just too visually overstimulating for him. There were too many boxes, and sometimes (like fractions) it was hard to organize it on the page. So I  decided to make my own paper. It was really crude, but I cut strips of construction paper, glued them on printer paper, and then took it to the UPS store and made $25.00 worth of copies. This is how it turned out:

And this is J using it for math:

Three completed problems

And this is J using it for handwriting:

I added bars in a different color so that he can see how he needs to account for spacing and how to plan the size of his letters

In fact, a few days ago, I couldn’t find a modified paper for him as we were studying geography so I pulled out a regular sheet of paper and it’s amazing!

(He still takes more than one line to write his letters, but HUGE improvement)

Anyone else struggle with handwriting? What kind of creative things have you come up with? What problems do you encounter?

Rites of Passage, Milestones, and Lawnmowers

J and W just hanging out.

I have a love hate relationship with rites of passage and milestones. Most of the time I hate them. They remind me of how “behind” J is, or how he’s just not like every other kid his age. I remember going to playgroups watching some babies walk and talk at ten months, their mothers proudly boasting their prodigy child’s accomplishments and then going home thinking, “My baby’s smart too. I know it. He’s just not doing those things right now.”

Milestones, physical abilities, rites of passage. They’re all really big things. Some parents hold their children back in school so their kids can have an almost full year advantage over the other kids in their grade. You now have kindergartners who are starting off kindergarten at six years old, who will turn seven just before school ends. Many times it’s because parents are making sure their kids have that extra developmental advantage to try out for school sports. So they can run faster and jump higher than the other kids in their grade.

While kids like J are still just getting the hang of running and jumping.

There’s prom and preschool graduation, learner’s permits and driver’s licenses. All dictated by the forces that be that they will happen at predetermined times and places. It’s part of our culture. They make blockbuster movies out of these sorts of things.

When J was a toddler, I asked J’s early intervention preschool teacher for developmental milestone charts–the kind the therapists used to assess toddlers when they’re looking for problems. She gave me three–one was for emotional development, the second for physical development, and the third for social development. J was behind in every single area, gaps of missing progress all over the charts. I would spread these charts out on our dining room table every few weeks, long bar graphs of data stretched out under month and year ranges. I would take a highlighter and highlight any milestone (always months after the suggested range) when it happened. I never celebrated them like other parents did. How fun is it to say to another parent, “My kid finally put two word sentences together!” when that parent’s kid has long past graduated two word sentences and now rattling off imaginative stories with another peer? I never “celebrated” J’s milestones with anyone. I’d keep them to myself and pull out the highlighter, thinking, “now if we just can get him to do x, y, and z, then maybe we’d be a little closer to catching up.”

Milestones now don’t happen as quickly and diversely as they do at the toddler stage (saying 5 words, saying 10 words, drinking from a straw, jumping on one foot…). Many of the milestones you reach at this age are social/emotional. And I know he’ll be behind on those as well–because, autism.

But this weekend we had a milestone happen and I’m pretty excited about it. And I’m excited to let people know about it. Maybe it’s because “mowing a lawn” won’t show up on any developmental checklist. There’s no “right age” to mowing a lawn. In fact, this weekend, I learned how to mow the lawn for the first time.

Steve gave me and J the tutorial, showed us the parts of the mower. He explained the automatic mode and how the mower shuts off as soon as you let go of the handle. We’d tried this with J last year, but it didn’t work. The mower was too loud. It was too heavy to push. Ultimately J was terrified of it. Even with J’s sound-cancelling headphones we couldn’t get him to touch the mower for more than a few seconds. He didn’t have the strength even to push the lawn mower forward or sustain the attention needed to be safe. But this year was a different story. His body and brain decided they were both ready. And with supervision he did it! And I had one of those giddy proud mom moments–where he’s actually doing something another kid his age would be doing. It’s even more amazing for me to think–all those things I know about J that most people don’t when they watch him–how big of a deal this really is. How his brain is always in sensory overload and how he’s regulating that better. How he’s maturing now to focus better and respect the machine. And to see the confidence in his face when he’s doing it. And best of all NO HEADPHONES!

So here is my proud rite of passage moment. I present to you J and the lawnmower:

(It’s not perfect–not perfect at all. You’ll notice the pizza slice strips of longer grass he’s missed).

Mastering the pivot.

Sometimes you just have to wait for all of the pieces to fall into place. And if they don’t, you just have to come back later and try it again.

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.