Navigating the Dissonance

 

We’ve been talking a lot about Star Wars lately. It’s practically Societal Canon. I’m not sure you can navigate Western Culture without encountering multiple Star Wars references in your lifetime.

Sometimes I feel like I’m doing a dance, always trying to find connections with J’s world and our world. So he can participate in our world. So I can make sense of his world and make it a little better. One thing I’m constantly trying to expose him to is pop culture—so he knows what kids are talking about at school. It’s like being required to learn all that Greek Mythology in school before you can talk about literature in the upper English classes. If you don’t know the reference of “the Midas touch,” you have no idea what anyone’s talking about. If you don’t know who Darth Vader, Katniss, or Triss is, you’ll have a hard time connecting to the middle school world around you.

Halloween costumes were always hard. Trying to find something J really enjoyed while at the same time finding something that people could recognize was a challenge. He went as “Max” from “Where the Wild Things Are” one year. Most people didn’t know who he was, even though the movie came out that year.

Sometimes those connections are so hard to make. Especially with music. J loves music, but every so often there are songs that just seem to destroy his life. I mentioned to my sister how much J hates Adele—like how “Someone Like You” throws him into some of the worst emotional meltdowns. My theory is that the pitch of her voice, the way she hits the notes sends his brain into an auditory fit. I imagine his sensory lines misfiring and the faulty processing—it’s why you’ll find him running out of Walmart screaming, or rocking huddled in a ball on the floor of the canned fruit section if “Someone Like You” is playing through the overhead speakers.

“I don’t know why but it’s her—it’s Adele.” I explain to my sister. “It’s her voice—he absolutely hates her voice. It’s so bad that as soon as the piano starts, he knows it’s coming. He’s in full meltdown mode.”

“You have to check out this story on NPR,” my sister tells me. “It’s from a few years ago. No joke—it’s about Adele. And it’s about ‘Someone Like You.’ It’s why, scientifically, people are drawn to her voice.”

So I checked out the story here. It’s called “Why some songs make you cry.” And it might be the reason why J cries tears of pain every time he hears it.

It was a revelation. (Seriously listen to the clip–it’s actually really fascinating).

Apparently there is a scientific reason why the masses are drawn to Adele. It’s because of her use of “appoggiatura.” That accented dissonance—that hanging between two notes that draws so much angst and emotion out of us, it’s that hang and release that makes it so satisfying. But for J it seems to be a holding pattern for anxiety—something that he’s afraid will never be resolved. It’s almost so much emotion he can’t handle it. A possible scientific explanation as to why J ends up on the floor in the fetal position with his ears covered when he hears that song. He just can’t handle the emotional dissonance.

He has other songs that are triggers for him. Ryan Adam’s “Desire” also ensues panic—my theory is that the harmonica with the exaggerated “appoggiatura” and the specific notes and range hits an auditory trigger that set him off.  He has no problem with Ryan Adam’s cover of Taylor Swift’s “Bad Blood”—there’s no harmonica there. But at the same time, not all harmonicas seem to be bad. In Bob Dylan’s “Girl from the North Country”–the Freewheelin’ version–the harmonica is filled with appoggiatura. In fact I have to turn it down in the car when he blasts into his solo. But J is just fine with it. Maybe it’s the soprano range he has a problem with. Or full, forcefull singing. A combination of both?

When we had J’s hearing tested at 18 months I told the clinician that J could hear perfectly fine. “It’s not necessarily whether he can hear or not,” she explained, “it’s how he’s hearing frequencies that we’re measuring.”

 

Maybe there are some frequencies he’s just not processing like the rest of us. I wish I had a PhD in audiology and the resources to test it. To see if my theories are right.

The problem with the processing issues becomes more complicated when you add anxiety to the mix.  “Someone Like You” has tainted Adele—the performer—for J. When “Rolling in the Deep” came out, he was initially okay with it—not his favourite, but he wasn’t scrambling to get out of the car if it was on. But because he’s made the connection that the two songs are by the same artist, he now has to find something wrong with “Rolling in the Deep.” Now he’s decided that “Rolling in the Deep” is “tainted” too—because it has the word fever, which in turn taints other things. Now he’s decided that words that start with “f” and “r” are tainted words. Which means Taylor Swift’s “Blank Space” is a problem too.

“Why?” I ask him, “You love Taylor Swift.”

“Because I don’t like the word “forever.”

You know, because of “f” and “r.”

“It’s a bad word,” he says to me with 100% conviction.

You can see how the anxiety can spiral out of control. All because of Adele.

I know it sounds crazy at first, but there really seems to be a method to this madness. You just have to be around it enough times. You always have to be observing it. And then you’ll see it.

So when “Hello” came out a few months ago, I knew we were going to have problems. “Hello” is everywhere. It’s sometimes on two different stations at the same time. SNL made a skit of it. So did the Muppets. In the car, at the grocery store, in the lobby. “Hello” is EVERYWHERE. And so when J heard in the car for the very first time, I debated changing the station—but I stopped. I needed to see how bad of a reaction this would trigger.

“What song is this?” J asked from the back street, a little anxious.

“I don’t know,” I said, playing dumb. “They sing ‘hello’ a lot. Maybe it’s called ‘hello.’”

“Hm,” he says in the back seat. “Is this Adele? It sounds like Adele.”

“I don’t know if it’s Adele. Let’s keep listening.” I lied. Straight through my teeth. But I was wondering—hoping—we could get through this song. Because we needed to. Because if we couldn’t acclimate him to “Hello” our lives were going to be hell for the next year or more. “Hello” isn’t going away anytime soon.

But “Hello” doesn’t have the same wailing, wanting quality as “Someone Like You.” It’s more of a “Hey, I want your attention. Can you hear me?” quality to it.

“Is this Adele?” he asked even more panicked.

“I don’t know. Do you like this? Is this an okay song?”

There was silence in the backseat. I could hear some deep breathing, trying to calm himself down. I could tell he was trying to figure out all the things his brain was processing.

We made it through the song. I didn’t tell him it was Adele. It took about five more times on the radio for me to finally muster up the courage to tell him the truth—which he ended up being okay with. Because he was able to be conditioned to hear the song without any preconceived anxieties attached to it.

To say that it’s a relief would be an understatement. For some reason, he’s able to process her “appoggiatura” better in “Hello.” The range seems to be right. The sounds aren’t so offensive in his brain. It’s a good thing too—because the most recent time we heard “Hello” on the radio, J happily said, “Mom, we’re singing that song in choir.” I know they play top 40 songs all the time in Art when the kids are working on their projects. And I know “Hello” makes it through the rounds.

Music, pop culture, can be nasty traps for autistic kids. Stuck somewhere they can’t understand, or stuck somewhere they literally can’t process—where music can actually be painful inside their heads. It’s so frustrating to me sometimes—because when people see him taking a panic attack over a song they just see the meltdown and us trying to coax him through it. I’m sure they think, “What’s his problem? It’s just a song.” I don’t have the time to explain to them in 1,000 words or less my scientific theories as to why it’s happening. That being the outsider he has to adapt and regulate everything he is to co-exist.

Here are some more interesting ways that music isn’t just something we experience—that it’s something our brain develops very specific responses to, just like other stimuli. In case you didn’t realize how much music messes with your head 😉

 

Neverland

J, our little Kindergarten Peter Pan

Up until now, I feel like we’ve been negotiating this puberty thing okay. J’s obsessed with hygiene and cleanliness. He would take showers three times a day if we let him. Flossing has to be followed up by mouthwash. We even introduced deodorant before the start of the school year. I let him choose out the scent, and we lucked out on the first try on the application type (it’s a click kind that dispenses a cool wet deodorant—something I thought he’d never go for sensory wise). We practice using it a couple of times a week because he really isn’t a smelly kid yet, but with autism, the more practice and exposure the better the success. We’re doing pretty good right? I mean he’s okay with deodorant! I had even bought a great book with really simple social stories to help kids with autism muddle through puberty (They even have great social stories for autistic girls learning to negotiate their periods).

But we haven’t hit any of the real bumps yet and he’s already grown out of that book.

The other day as J was putting on his deodorant—the deodorant that I felt so proud of successfully transitioned to–I reminded him that one day he’ll have hair under his armpits.

“No,” he said shaking his head. “I just want hair on my head.”

“Well you’re getting older, and so you’re going to be growing hair in other places of your body.” (Which we had already talked about) before. But this time I think it clicked because J looked at me horrified, almost betrayed, almost teary eyed that his body would do something he absolutely wanted no part of.

“But it’s not going to be that way forever, right?”

“Well, honey, yeah, it kind of is.”

Puberty is a strange, strange thing. It has the inevitable way of making you feel like there’s something wrong with you. When I went through it, I felt the exact same way too.  I was a late bloomer. By the end of grade seven I was the only girl in the change room still in a cami while the rest of the girls had graduated to wearing bras. I was desperate for a bra—not because I wanted one, but I felt there was something wrong with me because I didn’t have one. I finally convinced my mom to get me a training bra, even though that was probably pushing it too. My period went the same way. I was 14, at the end of grade 9 when that happened. I felt like I was the only girl on the planet who hadn’t had their period yet and that there was something totally wrong with my body because it didn’t seem to be doing the same things at the same time as my friends.

It’s hard trying to prepare your kids for this transition. It’s hard to know when things are going to kick into gear. You kind of have an idea on the order of how things will happen. But you don’t know when that will be. Months of steady successive changes? A sudden change and then we’re stalled for the next six-nine months waiting for the next thing to happen?

J’s not the only one who’s feeling horrifyingly betrayed. W has no desire to enter this territory whatsoever. She’s a staunch rebel to all things, “girly” (in her mind giggling over boys, celebrities, caring about hair and clothes–although she has started to take a little more interest in clothes). We watched Pirates of the Caribbean with the kids on Friday and at the end of the movie she announces: “Ugh! Close your eyes everyone. There’s going to be a kiss pretty soon. You can just tell by the music.”

W, our little Preschool Tinkerbell

This girl isn’t interested in kissing any boys soon.

It’s hard enough negotiating the onset of puberty with W. But I can talk to her about the emotional things. She understands what’s going on with the changes in her body—even if she doesn’t like it.

It’s hard figuring out puberty and autism. I’ll be really honest. I’m glad that we’re dealing with boy+autism+puberty. My hats off to you are who are raising girls+autism+puberty. So much harder to negotiate in so many ways. In some ways I think it’s really cruel that these kids who aren’t emotionally ready (let’s be honest, who is anyway?) have to deal with a changing body that they don’t even understand fully in the first place because of their sensory processing issues.

A few weeks ago, the school sent home a packet of literature and worksheets that J’s health class would be discussing and what we’d like them to go over with him. After thinking about it for a while, I eventually decided that he should know about everything that pertains to his own body. We’ll hold off on the girls and sex for now.

The strange thing is I’m not so much worried about the sex and girls with him as I am with him learning about those things in a classroom where he can read the awkward embarrassment from the boys and the girls. The mini eruptions of snickers and giggles. With a 5 second giggle from anyone in the class, J will interpret that sex and development is truly funny—not awkward—and therefore we run the risk of J saying something “human developmentally inappropriate to someone” later down the road.

The other problem is, that we also run the risk of him being socially inappropriate because he doesn’t know how to talk about the things he’s trying to figure out—like trying to make a comment on a girl’s development like he would their freckles or haircut. Or just saying something because he’s curious. Boys his age can sneak around these urges to “say something” because they know how or when to say it and get away with it—when teachers aren’t listening, or in some coded sexual euphemisms. I’m not saying this is right at all—I hated when boys would make sexually ambiguous comments at me or my friends.

Ugh. I know I have said this many times in our autism experience, but sometimes raising a child with autism is so much more complicated. Poor J. Social rules are hard enough to figure out. Sexuality is even harder. Half the time our society can’t even get it right.

It’s a conversation we’ll be having many times over in the next few years. As things change with him or when changes happen to W. He’ll learn it all eventually, and probably not in perfect timing (because when exactly is that anyways?). I guess the one thing we have going for us as parents is that these life changing events don’t happen all in one night. I guess the universe has granted us some mercy there.

W’s Kindergarten Picture

W’s Grade 6 Picture

J’s Kindergarten Picture

J’s Grade 7 picture

But right now, if my kids could negotiate with the universe and have it their way, I’m sure they’d stay in Neverland forever.

And Then Came Fred

 

Fred Beck

Steve and I never planned on getting a dog. 13 years of marriage and it never came up once, that is until January of 2014. W had gotten a fish tank for Christmas and within a week and a half and three trips to Petco (and PetSmart) we went through five guppies.

Five.

It was really painful to watch, with W tearfully questioning what she’d done wrong and why they had to “just keep dying.” She’d run to her bedroom everyday as soon as she got home to see if her fish had died while she was at school. Then, while sitting on the edge of W’s bed with an arm full of laundry, I watched the last guppy as it desperately fought dropsy and thought, This one’s a goner too.

And now we’ll have to get a dog.

Even though Steve and I never talked about it, the thought of getting a dog had crossed my mind before. I didn’t want a dog at all. I liked my house. We had finally started to recover from the grad school poverty days and had slowly accumulated “nice things.” I was thinking of all the other problems with dog ownership. The obedience classes. The potty training. Raising two kids is hard enough. I didn’t want that all over again. But every once in a while I had this nagging thought that the kids needed a dog. Even if I could convince Steve it might be a good idea, I couldn’t see it working for one big reason.

J was absolutely terrified of dogs.

So terrified that J’s anxiety around them made him dangerous. He would drop all of his things on the way to school, cover his ears, and run across the street without looking if he heard a dog bark or even saw one calmly coming towards him a block away. If we happened to get close enough to a dog, and the dog jumped or barked at all, J would scream and fight out of our arms to run away–making him all the more dangerous around an excited dog. He couldn’t even go trick-or-treating without screaming or crying because almost every other house in our neighbourhood had a dog. He hated going outside in the summer to ride his bike or ride his scooter because somewhere there might be a dog in someone’s back yard. He had even catalogued in his brain which houses had dogs.

I did some research about autism and dogs when the guppies started dying. There was a ton of anecdotal evidence of autistic children benefiting from dogs, but I couldn’t find any hard evidence supporting this. I did find one study at the time that dogs can benefit kids on the spectrum if introduced after the age of five. I watched videos of therapy dogs working with autistic children. In one video, after a year of daily therapy, a little boy with dog anxiety was able to pet a dog.

We weren’t going to spend thousands of dollars on a service dog, and I didn’t want to put up with a year’s work of very stressful conditioning in order for J to be okay with dogs. We were struggling with a load of other anxiety issues. I couldn’t do that.

Finally, we decided that we would try the humane society. With a two week trial we could see if we could really commit to a dog and see how J would react to it. If it didn’t work then we’d just give the dog back. We explained to the humane society the situation (that our son had autism and that there was a very good possibility we would be returning the dog). They were happy to help us, and said they had two senior dogs (Fred and Rupert) that met our requirements of 1) house trained 2) no barking 3) no jumping on furniture. We decided to give Fred a go.

Fred’s online posting from the Humane Society. 

We found out that Fred was with a foster family. All the noise and chaos of the kennel made him anxious (sound like someone else?). The foster family brought Fred over to our house (and kept him on a leash), and all of us stood in the front entrance huddled around Fred–except for J. J sat on the couch on the opposite side of the room, covering his ears, saying he didn’t like the dog and he wanted the dog to leave now.

The family said good-bye (trying not to choke up–they really liked him too and later we found out that they were considering to adopt him if we didn’t) and it was the four of us and Fred. J was still stressed, but eventually got off the couch. And we eventually convinced him to pet the dog (still on the leash–J insisted it stay on the whole time). The kids went to bed later that night, and the only way we could convince J to go to bed was to promise to give the dog back the next day. But I knew J. I saw how he was able to slink off the couch and pet him. I just had a feeling that it might work.

The next morning J woke up and said, “where’s Fred?” not because he wanted to make sure he was gone, but because something happened over night that made him okay with it. He was excited to see Fred.

I’m not going to say that two week trial was easy. It was awful–not because of the kids, the kids adapted just fine, but it was hard on Steve and me. I’d call my parents or sister and cry saying, “what have we done?” Fred had separation anxiety issues. He’d have accidents if we left him alone at home. Finally we learned that kenneling him while we were out would be a good option. Except that he hated the kennel too. It was a huge learning curve for me and Steve. I’d never had a dog and so I didn’t know what I was doing. We’d call friends with dogs for tips. We learned that dogs liked to sleep close to their owners and not in the basement by themselves. We ended up taking turns sleeping on the couch by Fred the first few nights because we didn’t know that.

We got so desperate at one point to convince Fred that the kennel was okay that Steve actually crawled in and sat with him. We then found out later that this kennel was WAY too large for him.

It’s been two years this week and I can’t imagine life without Fred. Yes, there are some days when Steve and I say, “why do we have a dog?” when we have to clean up a mess, walk him when it’s -20 out, or try to plan a summer holiday. But we’ve seen how he’s been great for both J and W. Sure Fred’s got his quirks–in fact J and Fred are similar in a lot of ways, but that’s what it means to bring someone into the family. Families are really just a big, beautiful mess. We chose to bring someone into a family but we don’t know what that really means, what the struggles and successes are that come with it. And how that someone will change entirely how you see life. How you all awkwardly and gracefully evolve into each other. I think about this all the time with J–I had no idea for almost two years that the baby I brought home would be so complicated. It’s not how I pictured my life to be like at all. But if you told me a few years ago we would be dog owners, I wouldn’t have pictured that either.

J at his first dog walk, about 100 dogs and he didn’t even flinch.

J and W on the dog walk

Giving Fred a bath

That Physical Piece

Before a run during Christmas break. It’s great to see J adjust to different weather conditions in running. It actually dovetails quite nicely with some of the mindfulness exercises we do before bed.

Growing up, I remember an old man with a toque and big boxing glove mittens, jogging down the sidewalk along Riverbend Road in the dead of winter. Shirtless. Each year I’d watch him as we drove by in our warm car just shocked–and amazed, thinking that this had to be the year he caught pneumonia and died. My parents would just shake their heads in unbelief as they watched him too. But even though we thought he was crazy, we really, really admired him. We didn’t really know why he did what he did every winter, but we knew he must have some sort of iron will–some incredible motivation to do it.

Mr Chan looking exactly how I remembered him. He has an amazing story himself. You can read about it here. Photo Courtesy Connelly-McKinley Funeral home.

I had to channel Mr. Chan today to get myself psyched up enough to run with J after school today. Fargo winters are much like Edmonton winters. Today wasn’t really cold at all, only -4 C (25 F), but there was a killer wind from the south which made it feel MUCH colder. I’m a fair weather runner. I’ll run, but it’s got to be under the right conditions. And I don’t run outside from the months of January-March. It’s too dark and cold, and really all I want to do is hang out in a blanket on the couch and watch Netflix. But this past year has made me realize how important it is for J to get out and run, play, burn energy any way he can. J needs that physical outlet (probably even more now that he’s hit puberty). He needs it not just for his physical health, but for his mental/emotional health as well. No matter what time of year or what the weather is like.

I mentioned J and medication in last week’s post. Even though he’s on medication for both his anxiety and ADHD symptoms we consider it just a piece in J’s regimen. Medication doesn’t solve all of his problems–and we don’t expect it to. We’re hoping that with the right dosage, it can quiet his brain down enough so he can hear his body, understand what it needs, and help him interact appropriately with the world around him.

Exercise helps J interact appropriately in the world around him. J typically goes on a run before school, then at school he has other opportunities to participate in physical activity. Of course there’s PE, but he also has movement breaks associated with occupational therapy which can include yoga. There’s also an additional time during the day where J goes to the weight room, does a circuit there, and then races on one of the video bikes. Then after school, J and I usually try to get in a 2-2 1/2 mile run before homework.

It’s crazy how much energy this kid burns–how much time of his day revolves around physical activity. But he needs it. He’s happier and works harder when he gets it. When we sit down to read or work through homework this body just feels calmer beside mine.

Over Christmas we tried to throw a few other things in the mix. We went sledding a few times and even made it out skating. My poor kids aren’t the best skaters around (every other kid their age seems to have been born on skates) but I’m really proud that they stick it out every time. Especially J. I know he’s making important connections in his brain when he’s trying to coordinate his body on ice.

It’s been fun to see him grow into this. He’s starting to run faster than me now (and I’m just hoping I’ll be able to keep up until it’s warm enough so I can bike beside him if I have to). Steve’s convinced him the treadmill is an okay option and we can get him to run 3/4 of a mile on that–our only option when it’s too cold and dark to go outside before school. Yes it can be an ordeal–if we’re sledding or skating it’s the whole snow pants, scarf, toque, waterproof mitts, loading up the car with sleds or skates routine. If we’re running outside it’s the whole find a few layers of long-sleeve shirts and see what fits under a windbreaker as well as putting on snow cleats on top of running shoes. For a kid with fine motor skills it’s a lot of work, but an essential part of having a “good” day. And it’s great that he’s starting to realize it too.