Big Problems/Little Problems

J drew the number 147 on the mirror after a shower (this is Wednesday, the day before 142 Thursday). He’s always thinking about numbers. Did this mean that 142 was going to be a non-issue on Thursday? Did this mean 147 was going to be the new “bad number?” I asked J about it and he said, “It’s just 147. It’s not good or bad.”

To say that J has a volatile relationship with numbers would be an understatement. J and numbers have a long and complicated history. Numbers were among the first words J picked up in the early years while we were still struggling with speech. J could pick out numbers patterns and knew most of his single digit subtraction and addition facts pre-K. J had an obsession with numbers. He loved numbers. But at around grade 1 / grade 2, he started to develop strange fears about numbers.

He’s been living with number phobias ever since. The ones J deems “tainted” or “threatening” change every few months. Right now, one of those numbers just happens to be 142.

J also just happens to keep track (and numbers) every single day of the school year. That way he can keep track of every single catastrophic event (in J’s eyes, anything that happens unexpectedly is a catastrophic event) and which day (aka NUMBER) it happens on. My theory is that’s how some of the number phobia starts. It at least explains a piece of it.

J has been dreading the 142 day of school for about a month now. I made an appointment weeks ago with Dr. T, J’s therapist, and they talked about strategies he could use to get through the day when it came around.

I used the Social Thinking Language that J’s speech teachers have really been trying to enforce over the last few years, the idea of big problem (near crisis) vs little problem (a glitch).

J (and a lot of kids on the spectrum) have a hard time figuring out that most things in life fall on a spectrum. I think this has to do a lot with the faulty switches in their brain that are rooted in anxiety. To them, either something’s a threat, or it’s safe. Either something’s good or it’s bad. It’s that cave man protective skill. J’s brain can’t slow down enough (naturally) to think that there might be different and varied approaches to looking at the world. Or that most things we see every day aren’t big problems (we don’t get earthquakes or tsunamis every day). Most things are little problems, like a “glitch” (running out of milk, getting corn stuck in your teeth, you know, annoying, but not life-threatening). There’s a great link for the Social Thinking chart explaining glitches here.

Up until the last year or so, all problems=big problems.
Will all of that positive narrative we had been building the last month, I felt J and I were ready to face this week. J was feeling confident in his anxiety strategies for handling the “bad number.” Then Monday came, four days before D-day, and I wasn’t sure we were even going to make it to the anticipated apocalypse.

It started with Monday morning drop off. Monday was French Fry Day (another phobia for J—he’s deathly afraid of French fries) and so Steve had packed a bag lunch for J the night before. For the first time in a very long time, we were ON TIME. I wanted a great start to the week, especially with 142 coming up, and we were off to that great start, until I drove up to the school and J asked, “Where’s my bag lunch?”

Crap! I thought. “I’ll bring it sometime this morning,” I said. My mind immediately started spinning on how I was going to pull this off. Would I have to be late/cancel my 9:00 am appointment? I’d have a little time to squeeze after. But would it be enough time before lunch? Would he be a hot mess of anxiety all morning long until it got there?

“When?” J insisted “When are you going to bring it?”

“Sometime before lunch.” I said, because I was still trying to figure out the logistics in my head.

“When before lunch?” I could see the anxiety stewing already. The shaking in his hands. The way he nods his head emphatically, demanding an answer.

I let W out of the car and watched her dash into the school. “Okay, we’ll drive back home now, and you’ll be a few minutes late.”

J hates being late, but I think the prospect of confronting a tray of fries in the lunch line and French fry anxiety trumped the being late anxiety. We got home, got his lunch, and got to school. Forgotten lunch, just a little problem—a glitch. Something I needed to remember too.

Shortly before pickup, I received a text from J’s para that I might want to pick up J early. His shoelace got caught in the pedal of the stationary bike he uses daily for a brain break, and he got into a small panic attack because he couldn’t get his foot unstuck momentarily, but it was enough of problem that it took him a good five minutes to calm down after it happened. But by the time I got there, he had pulled himself together and was pretty proud of himself for doing it. Again, small problems—a glitch.

During track practice after school, there was a mix-up on the 4 mile route. The pack J was running with turned around about the 3.5 mile point. J didn’t know where he was going, and so he turned around with them. But, by the time the coach and I caught up to them, the coach told them that they had to run all the way to the gas/station and stop sign. J was LIVID. J didn’t want to turn around run and head back for the additional ½ mile or so and then turn around again to go back to the school. His mind was fixed on the return trip. He told me he hated me, and then he told me all the things he hated about everything else in the world, and 142 came up again—all during the run back for a good mile. Finally I said, “That’s enough. If you make it to the school without complaining, that means you will have handled 2 glitches today. The shoelace glitch AND the route mix up.”

For some reason that clicked with him. And he made it back, without a peep.

Monday was crazy and full of glitches but I really think it helped us prepare for the bigger anxiety a few days later. Monday J was able to work through all the small problems that came his way, which gave him the confidence to use his coping skills and handle 142 in the way he needed to. And he did.

J enjoying his creation of a peanut butter Oreo blizzard

W joining in the celebration. When J wins, we all win

Thursday came and we made it through the 142 day of school with no problems! Even with speech cancelled that day (J hates it when people mess with the schedule) He had made it!  He got ice cream at DQ for handling it, just like we promised him last month when the infamous 142 started showing up in J’s daily conversations. With J, food always works well as an extra motivator.

“142 isn’t a monster,” J explained to me Thursday night. “It’s just a number” he said shrugging. “Just a glitch. It comes and goes. It won’t last forever.”

And just like that, 142 came and went without incident. Not a problem at all.

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 😉

 

Evolution of the Choir Concert

I’m holding my breath–ready to pass out–because we’re so close to the finish line but I can’t quite declare that we’re in the clear yet. At noon today, I announced to Steve that we had just passed the twilight zone hour (if J’s going to have a catastrophic meltdown at school it’s almost guaranteed to happen during the 11:00am-12:00 pm) and that we have one more day to go. We just need J to hold it together for one more day and then we can officially declare victory for the semester.

I don’t know why, but Christmas time has always been hard for J. Someone at church told me once that she had severe anxiety and that Christmas always triggered a flare up in her anxiety too. Maybe it’s the expectations we have at this time of year, the “countdown” to the “big day,” the crazy scheduling, the added responsibilities. I think for J it probably is a lot or all of these things.

I’m learning more and more that when you love (and live) with someone with anxiety, it’s hard not to let their anxiety become yours. Typically I really like this time of year, but over the years it’s become a season of helping J cope and manage. It’s become a season of holding your breath, crossing your fingers, doing a little dance, knocking wood, praying, and all other sorts of ritualistic and superstitious behaviour to ensure you both make it.

This year has been a little different (knock on wood). J has been able to do a great job of managing his anxiety up until the holiday (we still have tomorrow–I hope I don’t jinx it) however, this year’s been hard in the sense that because J’s getting older, the crazy scheduling and other daily responsibilities are bigger now. Choir concerts are on school nights instead of during the day, huge homework projects and end of unit exams are booked up right until the last two days of school. For the first time (for as long as I can remember) I’m really, REALLY, ready for the kids to be out of school just so we don’t have to keep up with the school stuff  or worry that J is going to have an explosive meltdown because of the stress of the season.

So far we’re making it. We had a really big victory last week. J had his grade 7 choir concert and he NAILED IT. For Steve and I, choir concerts have historically been a really stressful experience. In the beginning (k-grade 2 or 3), J wouldn’t let us in the same room as him during the concert. Even if he saw us try to sneak in, he’d begin a full on meltdown on the risers and scream.  Once J decided it was okay for us to watch him, it was painful to see how he couldn’t stay still on stage–how he’d fidget–not in endearingly quirky ways, but in socially inappropriate, ways. If he’d get excited during a song, he’d rub his legs while he was singing and jump up and down or smell his fingers, or flap his hands.

But this year–this year–was a breakthrough. J’s para (who is AMAZING–we’ve always seemed to luck out with amazing support staff ) came that evening to help out in the backstage in the wings. J had two girls placed beside him to help him out too. This was the same set up as last year, but his para worked really, really, hard with him to prepare him for onstage behavior. As in: no flipping ties, no flapping hands, no flipping band aids on fingers (he compulsively picks his fingers until they bleed), no chewing or picking fingers, no rocking, no hands on legs, no rubbing legs, no smelling fingers, and stay as still as you can. And this year the stars aligned and it happened. We had the best choir concert on record.

Here’s a short little bit of video evidence. J sings with the girls because 1) he still has a soprano voice and 2) grade 7 girls are much more mature than grade 7 boys and are therefore much better peer helpers.

(I cut down the clips so you can see how K and L, the girls beside him help him out at the 0:08 and the 2:17 mark. Bless his heart–he’s trying so hard to keep his body parts all in control.)

 

As I sat in the audience, it took everything in me not to erupt into a blubbering,crying mess. That’s one of the amazing things about the autism experience. Your heart just spills over with love for the people who help your kid out along the way. I just sat there, that gratitude you know you can never really repay for someone, for C his para, K and L standing next to him, E and M and all the other girls on stage who have helped him all through elementary school.

Yeah. There’s some pretty awesome people in the world. And I’m really glad they’re sharing the same space on this planet as me.

Have a very Merry Christmas or a very happy holiday in whatever way you celebrate!

–The Becks

 

 

What we remember (and how we teach our children about the world)

Bringing J to an awareness of the world–especially grown up things always makes me a little nervous. J’s brain is a steel trap for memories–especially memories that carry any pain or anxiety. J remembers things like back when he was in grade two, where the lunch ladies burnt the school pizza and set off the fire alarm while he was at gym, causing a (minor) evacuation. That was the 89th day of school and he won’t let that go. And every year since we hold our breath, cross our fingers, and go through all sorts of rituals to make it through the day when the 89th day of school rolls through. There’s a myriad little things like this J collects and stores in his brain, always remembering, always filing and pulling out those files occasionally to revisit them. To J, that’s what it means to remember.

November gets me thinking of the things we do, the rituals we do to remember things. Wednesday (November 11) was Veteran’s Day (U.S.) or Remembrance Day (Canada). American Thanksgiving comes up at the end of the month too. One of the things I remember as a kid—rituals ingrained in my head—came with Remembrance Day. As soon as Halloween was over, everyone started wearing poppies. Bright red flowers everywhere. In November we learned Remembrance Day songs in music class. I remember learning “One Tin Soldier” the 1969 song by The Original Caste. I remember it because it was a ballad—a story about a mountain kingdom and a valley. It was a war song. I mean, at seven and eight we were singing about people wanting to kill their neighbours, wanting treasure (which was really peace on earth), bloody mornings. You don’t forget things like that when you’re a kid.

 

And then there was the day before Remembrance Day at school. Where we watched old herky jerky black and white silent films of WWI and WWII footage. There was always an assembly—300 kids in a gymnasium where there was the reciting of In Flanders Fields by John McCrae followed by a junior high visitor who played a painful rendition of taps on their trumpet. And then 300 squirrely elementary kids sitting criss-cross applesauce on the floor were expected to sit through a moment of silence. Out of all the holidays and celebrations in Canada, I find it the most haunting, most patriotic, the most (almost) spiritual ritual Canadians have. And I wanted my kids to experience a little piece of that.

It’s a hard call sometimes as a parent, on what you want to expose your kids to. What are the world’s necessary evils you should teach them, warn them about, experience them to.? We’ve sheltered J and W a lot about what goes on in the “real world.” Even as an adult there’s only so much “real world” I can take before I want to shut off the TV or radio for a few months.

I wanted my kids to experience Remembrance Day—in that haunting, patriotic, spiritual way. But J has severe anxiety issues and that steel trap mind for things like this. But finally I came to this conclusion–history is safe. It’s behind you, it’s something you haven’t been through yourself, almost like reading a novel or learning the song “One Tin Soldier.” You can pick it apart and analyze it. Learn from it.

So we drove up to Winnipeg early Wednesday morning and made it (one time!) for the Remembrance Day service at the RBC Convention Centre. A cute military family sat behind us, two parents, service man and woman, telling their little elementary school boy what was going on while the black and white WWII footage was playing as we waited for the parade of flags to start the ceremony. “Who died?” The mom asked the boy. “Great grandmas and grandpas died,” the mom answers her own question.

My kids got to wear poppies and we sat through the whole hour and forty-five minute service. It reminded me of a funeral, the standing, the sitting, the standing, the sitting prompted by the emcee. The placing of wreaths (which took FOREVER—all the little kids [even mine] were a quiet squirrely in their seats).

And then, while I was sweating it out, hoping my kids would be quiet and respectful until the end, one of the speakers—a WWII vet (who recalled his arrival at Juno beach with all of the horrors of war) said, “if we don’t remember, who will?”

That’s why we do this. That’s why we make our children sit still and go through these rituals. Because it IS important. It’s important to J, with all of his anxiety and rituals and (at times) paranoia, it’s important for him to learn to be still and respectful and remember. He didn’t say a word through the service. I’m not even sure how much he picked up on. But that’s okay, because I don’t know if anyone of us can really understand what happened in those wars. But we do understand this: that we need to be grateful.

These past weeks we’ve talked about refugees with the kids. We showed them this video one of my cousins posted about refugees landing in Europe. We asked them questions about “what do you think it would feel like to leave everything at home and have to move to another country without any of your clothes or iPad or games or anything?” we say, “look at these kind people helping out. Do you think you would help out like that?”

Yesterday I had NPR on in the car. My kids never listen to NPR with me, but this time J heard “Paris” mentioned and asked. “What’s going on in Paris?” He’s obsessed with geography right now. He knows Paris is the capital of France. I didn’t know what to say. Does he really need to know this? I thought, but he is asking. He’s expecting an answer.

“Some bad people hurt and killed many people in Paris.”

“That’s not good,” he said.

“No, it’s not.” I said.

Right there, in the car, J learned another step closer to empathy.

We don’t tell him about the school shootings that happen so frequently. Murders, racism, descriminiation, and violence. We try to keep him away from the heart-heavy headlines. I think he’s steel trap brain would hold on and hoard all those things.

But we’re starting to talk about the human problems and struggles. The stories that help us remember we are a human family. Because it helps us help this autistic boy understand others and ultimately himself better. to learn those lessons in empathy.

We’re asking this question more and more:

“What do you think it would feel like?”

It’s that question that helps us all remember what it’s like to be human.

That Time at the Dentist

Thursday we took the whole family to the dentist and it was hard. Really hard. But not necessarily in the way you might think.

J had the first appointment. We did this because we knew this was going to be hard. But we also knew that J had been a few times before, and we know that with J, the more times he does something, the better he’ll do. He’s been to a few cleanings before. He never makes it to the end, but usually the hygienist can get a little something done before he squirms to much or takes a full on anxiety attack.

Thursday went okay–at least us parents felt it went okay initially. In fact, before the dentist consult, I thought things were going pretty good. Not perfect, but not terrible. J handled the xrays like a pro–a huge improvement from the first few visits. He handled the large, awkward wing bite film cutting into his cheek. He handled the readjustments when it slipped. He held still when the pictures were taken. Both Steve and I were SO proud of him. Big steps here, people. I wanted to say to everyone, “look how awesome he’s doing!”

This is J post xray bite-wings, and “LOOK HOW AWESOME HE IS DOING!”

And then came the scaling, and to the hygienist’s credit, she really tried her best. She was really patient with him, but he was just too squirrely and unpredictable to get much done. At that point we all decided to give J a break and consult with the dentist. But the dentist took about 15-20 min to get to us and by then J was totally done. He was a hot sweaty, anxious mess. After a quick consult, we found out that J had two cavities, and that we were going to be referred to a dentist at the hospital–you know–fully put under to take care of the cavities AND the cleaning. And at that point I almost started bawling my face off in the office because I’m going to have to put my child under full anesthesia and that freaks the heck out of me.

I don’t know why. I’m writing this a few days later and I’m realizing it’s not the end of the world. I’ve been put under twice in my life for surgery. Steve’s been under twice too. Kids go under all the time for tubes in the ears. But I think I was a little more vulnerable that day for a few reasons.

Maybe because it was because we work on anxiety every day and a lot of times the anxiety monster wins. Today it won. I get that he might need some sort of sedation for the cavities. Maybe laughing gas? Does he really have to go all the way under? We have tried pulling teeth twice at this office–the first time went fine–J handled the needle, tolorated the numbing and the dentist got his tooth out without any big problems. The second time, J was so paranoid about the numbing (the needle wasn’t the big deal–it was when he started to freak out about his cheek falling asleep that was the big deal) and it was an all out wrestling match to get the tooth out. We were all a little shaken up about that.

So yes, I get that he’ll need to have sedation–possibly be put all the way under for the cavities.

But the cleaning? I know he’ll figure it out. Heck, he figured out the bite-wing x-rays and was an all star over that AT THIS VERY VISIT.I know if we get this boy in the chair enough times he will learn how to get through it. He always does. He held his own urine for 7.5 hrs when we were potty training because he was so resistant to everything potty training and then he did it. At 3 and a half. And he’s been potty trained ever since. We had an all out stand off back in March about piano practice 45 minutes of me sitting on the piano bench waiting for him to finally sit down and do it. He’s practiced M-F ever since. He isn’t always happy about it, but he’ll do it. Bike riding, numbers, gymnasiums. That’s just how this kid works. That’s how he gets through all anxiety. He just has to push through it.

I know it would be the same way with a cleaning. We could spend 5 min in the chair at a time with a scaling. Then go home, and then come back next week and bump it to 8, then 10, and then the whole time. It would be SO good for his health in the long run. He wouldn’t have to wait annually or even longer for the “full meal deal” fully sedated in the hospital. I KNOW HE COULD DO IT. I’ve known him for almost 13 years now. And as I start to try to articulate this cleaning plan to them I realize what a ridiculous request this is for them. This is totally, 100% not financially viable to do it this way. I know at the end of the day this is a job and the reason we all work is to make money. I know they don’t “do disabilities.” Their office doesn’t have any of the resources for that. Steve asked about laughing gas and they don’t even have that in the building. I know this is also a private practice and they can service whomever they want. I don’t blame them. It’s true that they’re not equipped to handle him. It’s true J is hard. If he weren’t my son and I didn’t know him well enough, I wouldn’t want to try helping him or feel confident in helping him either. If I didn’t know anything about autism, I wouldn’t know how to treat him either. And the more I step away from this experience, the more I see this dentist is right. They are just not a good fit for each other and the dentist is being very responsible in referring us somewhere else.

But what I really want, and I don’t know if this is even possible, but what J needs is someone who is willing to let us “scream it out” for the first couple of times, who is willing to fail the first couple of times. That’s the hard thing about dealing with the world outside of our home. Many times it’s not feasible to let him scream it out. It can be unnerving, annoying, and most people out there know absolutely nothing about autism. We all share this world and there are social norms and protocol to follow, because let’s be honest, none of us are the same, none of us see the world the same way, and we all have to somehow figure out how to work and live and be with each other. That’s why the norms and protocol are there. We all have individual rights we want protected and honored. Sometimes they knock heads with each other. And giving and taking is just being a part of the community.

At the end of the day, my requests might be unreasonable. With this dentist they definitely are. No fault on his part. My requests might not be okay for anyone and that’s okay too. Of course, being a mother, I am biased and sometimes that clouds my judgement and that might include my judgement on dental procedures. In the end, hospital admission is what we might have to do, and if that’s the right path in the end, then it will be the best decision to make.

I came home, still really upset. After talking with my sister she let me know that there are lots of dental options out there, even pediatric dentists with beds to strap down children while they’re on laughing gas–Hannibal Lecter straight-jacket style–all in the dentist office. She knows because she’s been in these offices and her son saw 4 different dentists until they found the right one for him. He doesn’t have autism, but he has anxiety going to the dentist. As she said, “plenty of people have bonafide fears of the dentist.”

So I press on in my quest for the right dental procedures for J. I’ll look into the sedation dentistry offices here in Fargo (which in retrospect, that is probably the first place I should have gone. I probably should have done a LOT more research going into this. I guess I thought over the years J and the current dentist would just grow into each other. Which is ridiculous, because they see each other a good 20 min at most a year). I’ll probably go into each office and talk to the dentists face to face and see what they think and feel about the issue. I’ll ask if they’ve every treated kids with autism before. I’ll ask them if they really feel like hospital admission is the best option for the cavities, if they feel like they would be up to trying cleanings with us, or if they think that is both too much for them and J to handle. At the end of the day it comes down to the right fit and procedures for J. Sometimes I forget that with health needs (including dentist) you have to really research and shop around–really shop around. The health care professional might be great for your friend’s family, but not for yours. You’re doctor might be great for you but not your husband. Every dentist or doctor has strengths and weaknesses (like us all) and it’s my job to see who is the best for J and his needs.

Signing off for now–until the next installment of the dental saga 🙂

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.