Full Catastrophe Living

Me back in the glory days–not really the glory days. I wasn’t really a fast runner at all. This is my picture of XC. I don’t know if it will ever match up with J’s picture of XC

The turn of events this week are all because of one teeny tiny mistake. I thought J would picture this week in the exact same way as I pictured this week. I do this sometimes. I remove me and J from the world for a little bit, we work hard on hard things together, and then I expect us to end up at some better place I’ve created in my mind. I’m not shooting for the stars or anything. Just a small, positive change. One step forward instead of three steps back. That’s all. No Disney inspirational movie making plot here. I’m just looking for baby step progress.

This is how I saw this week and the events leading up to it:

We run all winter. We master the mental and physical hoops that come with running in below freezing temperatures. Track season starts. J runs with the group without complaining—with that new mental capacity we’ve been practicing the last five months. He stays close enough to the group, maybe a block, or block and a half behind. Last of the pack, that’s what I’m anticipating. But not too far behind. Not four or five blocks behind like XC season. That’s how I saw track happening. Like I said. I wasn’t expecting anything much or outrageous.

This is how J saw this week :

Just like XC. Same routes, same friends, same coaches. Because that’s what I told him it would be like. “Track is just like XC, J” I had told him over and over again for the last 5 months. “You’re going to love it.”

And that’s where I made my mistake. J took me literally. He thought track would be the literal version of XC reincarnated.

And boom. Worlds collided. His expectations vs my expectations and you have full on catastrophe.

That’s what started Monday’s troubles.

Monday I get a call from one of J’s paras around 2 in the afternoon, letting me know that the first track practice will be held in the cafeteria after school (because of weather) and so we could discuss where I could meet up with them. “Oh,” I said. “We should probably let J know then. I think he’s expecting to start practice up at the high school.”

J’s para text a few minutes later:

“I told j that track will be in the cafeteria today and he did not like that idea.”

No, he did not like that idea at all. When I came to meet him after school, he came out with his track bag over his shoulder, fully dressed in the clothes I sent him to school with.

“He had a little meltdown—not a big one where I had to call the principal—but he said he didn’t want to go to track today. He says that he doesn’t want to go to the cafeteria for track.”

On the way home, J was all tears when I asked him about why he didn’t want to go. I had my suspicions. In J’s brain kids shouldn’t be running in the cafeteria—or the halls of the school—which was where they were going to practice sprints. In J’s brain, that’s not what track looked like. Track was going to be just like XC. Running for a long time. At the high school. Outside. With friends. Just like I had promised.

“How do you feel?” he asked mid-mini-meltdown in the back seat.

“Sad. Disappointed,” I said. “I thought you wanted to run track.”

When we pulled into the driveway, J suddenly stopped crying. “I want to go back,” he said determined. “I WANT to go back.”

J changed quickly and we rushed back to the school. He joined the track team in the cafeteria. I watched him as he fully participated with his uncoordinated body, arms and legs flopping all over the place as he tried the lunges and skips and jumps and other form drills with dozens of other kids in the tiny cafeteria. He also waited patiently for all the boys to run sprints on the 3^rd floor hallway.

“J, I’m so proud of you,” I said on the second drive home. “Isn’t track great?”

“Yes! I’m going to do it again tomorrow.”

“Wow,” I thought. “We’ve done it! J got over the changes. He’s adjusted his expectations. It was just a little glitch, but now we’re good.

And then Tuesday happened.

Around two in the afternoon I got another call. J had another meltdown and this time principals were involved. I have to say, sometimes when I get called in, it feels like I’m the specialist called into a crime scene—like Sherlock Holmes, the person who finds the clues that no one else sees and has to figure out what the heck just happened. We get J calmed down and settled, and we try to figure out what happened. They tell me J started obsessing and stressing out about numbers, and words, and spellings (all symptoms of his anxiety) and then it just escalated from there. But the thing that sticks out to me the most is the phrase J keeps saying over and over in the room, “I don’t want to stay after school.”

And that’s when my best educated guess clicked—I say educated guess because by this point, I know I will never truly understand the reasoning and logic that happens in J’s brain.

“I think he’s stressed out about track,” I said. “He had a mini meltdown after school about it yesterday, but we went back and he ended up being okay. But maybe he’s not okay. I mean, it’s not what he’s expecting—running in the school, for one thing.”

And then I remembered something else.

“In elementary school, if J had a bad behavior day, he had to stay after school—like detention. I think he’s equating staying inside the school, after school, with detention, even if it’s for track.”

J came home early with me. He missed track. As I drove W to piano lessons, we passed the long distance track team running. Outside. I was all tears. Because J has taken 4 minutes off of his mile time over the winter. 4 whole minutes. And because of his anxiety—the most disabling part of his autism diagnosis, he wouldn’t be able to run track. I started questioning if XC was going to be a reality in the fall. We came home and I made a T chart comparing XC and Track for J. J wrote down his “new picture of track looked like.” I explained to him that staying after school for track was not detention and that we didn’t do detentions anymore. And then I was done parenting for the day.

I asked Steve to do all the homework with him that night. I made dinner and read a chapter of The Roundhouse. Steve and I watched Netflix the rest of the night.

And then came Wednesday

By Wednesday, I had no expectations for anything. J saw the kids on Tuesday and said he really, really wanted to try track again. The paras and I texted back and forth that day about it. They said J was excited to do it. I met him after school. J’s special ed teacher (who is also one of the track coaches) let me know that the middle school long distance team would be meeting at the high school (not because of J, just because that was the plan) and so J and I met the team at the high school. And J ran with the boys/girls high schoolers and middle schoolers, straggling about a block behind the last girl runner. This is what I was thinking track would be like. It was a good day.

Thursday practice looked much like Wednesday’s, except the boys and girls middle schoolers ran their own route. J was able to keep up with at least one other runner at all times during the run (which is a huge relief for me, having a buddy who can also be aware when crossing streets). He even finished his run with the first finishing girl.

I look back at this week and I think, “Wow, that’s not how I expected this week to go at all—after Monday. Especially after Tuesday.”

We celebrated making through the week at Sandy’s donuts. Because you have to celebrate the little things.

I think that’s what keeps me going. It’s what keeps me from giving up altogether with J. Knowing every day will be so much different than the day before. It’s so unpredictable, that even after a bad day I can’t guarantee that the next day will be bad. Living with J is truly full catastrophe living.

Jon Kabat-Zinn once said that “the nature of the human condition [is] to actually, at times, encounter uncertainty, stress, pain, loss, grief, sadness and also a tremendous potential for joy, connection, love, affiliation.  And all of that is ‘the full catastrophe.’  It’s not just the bad stuff.  It’s everything.  And the question is, “Can we love it, can we live inside of it in ways that actually enliven us and allow us to be fully human?”

That, says Jon Kabat-Zinn, is what full catastrophe living is. And I think that’s the perfect definition of this whole parenting business.

Never a Controlled Experiment

We visited the Plains Art Museum the day after Christmas. This is the first time J had ever shown interest in the installments at all. He went around reading the placards. He did get bored after a little bit, but I was impressed that he could focus enough to find something he was interested in. He really got into Picasso’s biography, and we made a game touring Picasso’s pottery and figuring out which President of the United States was in office when each piece was made. Usually he’s very overstimulated in places like this. Maybe the new dosage helped. Maybe he’s just maturing. Sometimes it’s really hard to tell.

I feel like maybe I should write this post in installments—in fact, maybe over the next few weeks I’ll go into a little more about our experiences and thoughts on autism and medication. It’s obviously not an experience, story, or discussion that can be summed up in 1,000 words or less. It’s also a very emotionally charged one—some people feel really strongly for or against medication.

At this point in J’s life we feel that medication for his anxiety and ADHD symptoms are necessary. That might change. After all, he’s constantly changing. In fact, we saw Dr. R. a week and a half ago and after the nurse took J’s vitals she exclaimed, “Wow! He’s grown an inch and a half in TWO MONTHS.” It’s crazy. I’d noticed he’d been growing too, but I didn’t realize it had been so much so fast.

After our visit with Dr. R, she suggested that we might try upping J’s medication for his ADHD symptoms and thought that trying them over Christmas break would be a good idea. I came home and Steve and I talked about it and we decided to go ahead and try. J would be out of school for two weeks, and although we wouldn’t get a good reading on how it would affect his academic performance, we would be able to see how it affects his impulsivity and whether it increases those precious few seconds between a trigger and a reaction (the time where he can also apply some of the mindfulness strategies we practice every day). It would also give us a chance to see if J would have any negative side effects—in a safer, more manageable environment. After all, it would be harder for teachers (and more embarrassing for J) if he had more extreme emotional mood swings, stomach aches, etc. at school.

Two days into the new dosage, I started to doubt the timing. I had thought starting two days before Christmas would be best. It would give us two full weeks to see if 1) the medication was helping 2) the medications was helping but had undesirable side effects or 3) the medication didn’t seem to be doing anything at all. What I hadn’t thought about was that things would be totally different for J this week. Steve’s mom would be flying into town for Christmas, we wouldn’t have that fixed “school” routine, our eating habits and times would be all off, and then there was the whole Christmas Day experience, which J historically has had a really hard time with.

The first two days went fine. And then Christmas Day and Boxing Day happened. For those of you who are not familiar with ADHD medications, there’s this magical, bewitching hour (otherwise known as hell) that sometimes happens between 3:30-4:30pm when the medication wears off. Some kids have a severe reaction, a “coming down” or “rebound,” and they need to take another half dosage to ease the “coming down.” We went through this a year ago for a few days after initially starting the medication, but I forgot how bad it was. To say that J was an emotional wreck Christmas Day and the following day would be an understatement. His sleep for both of nights was terrible. I’m glad Steve’s mom was patient and understanding through the whole ordeal. She only gets to see him a few times a year, and I felt bad that she had to experience this side of him, but she was so supportive, calm, and patient. After those two days, Steve and I almost took him off the new dosage—but at the same time, I wasn’t sure if he was having meltdowns and sleep issues because of the medication, or because it was Christmas and his routine was off and grandma was here.

I started kicking myself for upping the dosage “at the wrong” time but then I thought: When is the right time?

After all, parenting has never been a controlled experiment.

The variables are constantly changing. Children are constantly growing—it’s their job. They grow tall, gain weight, lose weight, and hit puberty. Their body mass and levels of hormones are constantly fluctuating. They never sleep for the exact same amount of time every night and never eat the exact same caloric intake a day. No matter how “routine” our lives are, we never do the exact same things at the exact same time for the exact amount of time long enough to come up with any perfectly controlled results. There are 1,000s of factors every day that we can’t control and are always changing. People unexpectedly drop by or call. Things surprisingly go right or wrong. Nothing is 100% steady or predictable.

With J the variables were most definitely all mixed up. The meltdowns and “jitters” could be the medication. It could be the holiday and non-existent routine. It could be both. Or it could be something else altogether. Like being a teenager and waking up “on the wrong side of the bed.” A hormone swing.

Since we were in the holiday weekend, and didn’t have access to Dr. R’s office until Monday (it was bad, but I couldn’t justify it being an emergency call), we decided to stay the course. And Sunday was better and today was better too. In fact, I feel like J’s attention and impulse control have been really, really good today. And we haven’t had any “rebounds” or bewitching hours Sunday or today. I’ve been better at asking J how he’s feeling–before the tapering of the medication. “J how are you feeling? Are you feeling jittery? How’s your tummy? Are you feeling anxious?”

It’s hard to tell. Maybe today seemed better because I wanted it to seem better—because I needed today to be better. I’m not always an objective observer. But we’ll keep at it, and we’ll be keeping in touch with the doctor’s office along the way. In a few weeks we’ll be able to really see if it’s the right choice forward or not. As J always says, “tomorrow’s a new day!” And that really could mean anything.

Here are some pictures of our holiday with Sandy. It was great having her here! It’s great that she’s so supportive of us as well. She really gets to see the good, the bad, and the ugly, but that’s what families are for, right?

J with one of Star Wallowing Bull’s paintings

Grandma Sandy and the family at the Plains Art Museum

1st edition Picasso pottery

Picasso pottery

Star Wallowing Bull

This Mid-Semester Slump

The curse of daylight savings means that the sun is down around 5 here…but it also means the pretty lights get turned on when you head downtown for an early dinner.

This past week was sort of a bummer week for my middle school kiddos.

After two months of working really hard, J started up with some disruptive behaviors at school again. We still aren’t sure why; we’re still trying to figure that out. His principal, teachers, paras, and Steve and I have tried to pool ideas of what it might be. Have there been any changes in routine? Could his mouth be bothering him? (he gnaws cankers into his cheeks and lip like nobody’s business) Could it be daylight savings? (I swear it’s dark by 5 here in Fargo) We’re coming up on the holidays (and once again a change in routine) could it be that? Or maybe he’s being a middle schooler trying to test the limits. Maybe he’s just being obstinate and defiant.

With J it’s never a controlled experiment. The variables are constantly changing. Which makes it so hard to find a cause.

By Thursday, W had problems of her own. When I picked her up, she plunked down in the back seat, sniffing snot and squeezing the tears back into her eyes.

“Mom, they took away 6-2’s personal devices [aka personal laptops],” she said between sobs. “I’ve held my tears in all day, but I’m just so mad!”

“What do you mean?” I asked, trying to be sympathetic. Honestly I could care less. Sometimes I wish my kids didn’t have technology accessible to them at all times.

“They caught some kids being on websites they shouldn’t be on.”

“Yeah?” Once again I said, trying to sound sympathetic, though taking kids’ devices away for doing inappopriate things sounds pretty legit to me.

“It’s just a few kids,” she said getting worked up again. “And now we all have to pay for it. It’s going to be so embarrassing when we show up to other classes and the other sixth grade teams have their devices and we don’t.”

“It’ll be a good opportunity to learn and do things without a computer. When I was your age I had to look up everything in the library.”

I knew as soon as I said it that W would think I’m an ancient dinosaur.

Friday W plopped in the car again, steaming mad, holding back sniffles again. “The principal came in to talk to the 6ths graders. You’re not supposed to share locker combinations with anyone, but people did and now things are getting stolen. He said that this is middle school and just because someone is your friend one week doesn’t mean they’ll be your friend the next week.”

“Okay,” I thought. That’s actually some pretty sage advice.

“And then our other teacher said we were slobs because we never cleaned up after ourselves!”

Like I said, it’s been a rough week for the Becks on the school front.

I realized that W–and possibly J, and probably the whole staff at my kids’ middle school have hit the mid-semester slump. This is the first semester in 5 years that I haven’t been an adjunct at one of the universities here, but every semester for the last 5 years, at about this time (those weeks leading up to Thanksgiving) I’ve experienced the mid-semester slump. Tough times for administration, tough times for the teachers, tough times for the students.

The mid-semester slump where the honeymoon with your students is over, and the feeling is mutual on their end. You’re counting down the weeks until the end of semester, and you’re trying to keep that vigor and passion for your subject even though they’re half awake and attendance is spotty because of pressures from other classes. Out of nowhere you have students showing up during your office hours—office hours you’re desperately trying to keep open so you can catch up on grading. These are the students that haven’t attended your class since the third week of the semester, and even though your grades aren’t up-to-date on Blackboard, you know that they’re failing your class now and they will fail your class by the end of the semester. You have to break the news to them—the news they already know. Sometimes they’ll even say, “If I don’t pass your class, Ms. Beck, I’ll be kicked out of school.” And even though it’s not your fault they’re failing your class, you feel like an awful person, and you hope they don’t show up during the last few days of the semester to fill out an SROI (a student evaluation of the instructor’s teaching abilities) because you don’t want them filling it out while they’re still mad at you for not passing them.

This week made me really appreciate what the teachers and staff do for my kids and their educational endeavors. Being a teacher is hard.  I really really appreciate what they have to put up with.

And because I’m frustrated with J right now, I appreciate them even more. I appreciate it when after we have an incident de-briefing, they tell me that they still love my kid and that we’ll figure this out.

Saturday night, decided to try to take a break from the slump. Steve was in Las Vegas for a work conference, so it was just me and the kids. We went out to eat. We came home and had ice cream.

Dinner at Sweeto Burrito. To ease the slump.

 

The kids have two days of school and then it’s a break for Thanksgiving and then a few more weeks until winter break. Like I tell J when we’re running and it’s getting tough: “We’ve got this. This won’t last forever.”

 

Ape Brains and the Middle School Boy

J at the Topeka Zoo in 2008. Meeting the apes.

Because we walk after school from the middle school to the high school every day, I’m getting a refresher of what the real middle school population looks like. Not the one that you see in the halls, following school rules, responsibly exchanging books from their lockers to be prepared for the next class. The population who is headed home from a long day of school, letting out that bottled energy, true colors showing. The pushing, shoving, jeering, girl flirting kind of middle school population.

More specifically, the ape-brain middle school boy population.

Like the kid who pushes 30 miles an hour on his moped, circling the block a few times to impress the girls walking home. The boy chasing after the moped, flip-flops smacking against the road while his friends walking behind on the sidewalk wail and cheer after him, also trying to impress the girls walking home.

J watched this whole scenario go down the other day and said to me, very loudly and proudly because he’s great at judging other people’s bad behaviors, “That’s really dangerous. They’re engaging in risk behaviors.”

Risk behaviors: Actions of choices that may cause injury or harm to you or others. One of many terms in Chapter 1 grade 7 Teen Health we’ve been practicing since school started. Along with consequences, cumulative risk, prevention, self-evaluation. Every kid in grade 7 health has been learning these terms since school started. Because apparently for the human brain to progress, it has to digress.

And for some reason boys seem to most visibly manifest the digression to the ape brain.

My sister reminds me of this all the time. She should know. She taught junior high art for a few years. She’s told me stories of boys–neurotypical boys doing really stupid things. A “normal” boy slithering on his stomach into her art classroom, claiming he was a snake. The boy who thought it would be really funny to set off a stink bomb but failed to think that setting it off right next to him would 1) ensure he was the victim of the most potent part of the bomb and 2) would pretty much let everyone know that he was the perpetrator. The boy who showed up in a fur coat every single day of the year. My sister’s stories trigger memories I have of middle school behavior. Like when I was in junior high and heard that a boy in another homeroom took a pair of scissors to a girl’s ponytail sitting in front of him.

During J’s ultrasound and the “reveal” of the little turtle between his legs all I could think of was what boys looked like in middle school. I knew nothing about boys. I grew up with one sister. I had no idea what to do with boys. Especially when they turned into boys like that.

I’m pretty sure J had an ape brain day today, full of defiance, work-avoidance, attention seeking, pushing the limits. At least, that’s what my gut told me today when I picked him up after school, “This is it. This is definitely a middle school boy pushing the limits exhibiting full risk behaviors.” But with J it’s tough. I can’t always be 100% sure. Not all “behavior” days look the same. Last week’s spectacle looked different. Last week, my gut said, “This isn’t middle school boy. This is something else.” It didn’t feel like middle school boy. I can’t even say for sure if it even looked like autism boy, because sometimes I suspect there are other things going on we don’t even know about.

So while there are rules and protocol to follow for the typical testing-the-limits middle school boy, there are no rules and protocol for dealing with the autistic testing-the-limits middle school boy. Because here’s the fun thing about autism: autism looks different in every kid. And to make matters worse, it very, rarely stands alone. It’s got friends like anxiety, obsessive compulsive disorder, ADHD, oppositional defiant disorder, and more that look a lot alike and like to hang out with each other. It’s what leaves us parents, teachers, and caregivers banging our heads against the wall. Trying to figure out what to do.

Steve and I escorted J home after school angry and demoralized. J knew the drill. Late dinner minutes. Privileges taken away. But when he got through the door, he started to panic. “I need to go exercise.” We had already said no to cross-country. That’s a privilege. He has to behave to go. But he got more panicky and insisted. “I need to go exercise now. I need to get all this bad energy out.”

So we rushed to get changed and were able to get out of the door by 4. Steve drove us and we were lucky enough to hop out of the car and catch the boys at the intersection by the high school. Today was a hard practice. We ran drills. We ran far. J started crying quietly to himself near the end. He kept muttering, “This is hard but I can do it.”

I’m still not sure if letting J do cross-country today was the right thing. It is a privilege. He has to behave to go. But at the same time it seemed like he needed it. He seemed to know himself well enough to need it.

I’m not sure what we can do for now because I feel like we’re sort of spinning in circles. We need to find out if it’s the middle school boy kicking in, amped up anxiety that’s looking a whole lot different than it did a few months ago, autism that’s looking different now that he’s getting older, something new altogether, or some or all of the above. Unfortunately all of this takes trial and error and time. For the doctors to figure things out. For the teachers to figure things out. For Steve and I to figure things out.

Tomorrow’s a new day. We’ll see what happens.