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.

Where’s the Smart Boy’s Guide?

Emotions and middle school are such an awful combination–for parents and kids. W had the bulk of her frustrations at the beginning of this year. Understanding social drama is hard at this age. I looked online for resources for middle school girls and emotions, and not only did books come up for parents, but there were dozens of resources for middle school girls. I ordered three books from the American Girl Smart Girl’s Guide series: A Smart Girl’s Guide to Knowing What to Say, A Smart Girls Guide Drama, Rumors, and Secrets, and A Smart Girls’ Guide Friendship Troubles. I was SO impressed with all of them. “How to compromise with your parents and teachers. What to do if you need to say no. Dealing with difficult adults. What to do if a friend lets you down. What to say when your friend’s parents get divorced.” That’s just a small fraction of the topics covered in the Knowing What to Say book. We read some of it together, and then she read the rest of them on her own.

W gobbled all of them up in a day.

J’s been consistently the one who has been struggling with middle school (and autism) emotions the most. Thursday W had a violin performance at the high school and needed to be dropped off at 6. I was still finishing off the second coat of paint in the kitchen at 5 and sent Steve to grab a Little Caesar’s pizza (because dinner was not happening that night). Just as Steve headed out the door, J yelled, “we’re getting bread sticks, right? RIGHT? RIGHT?”

Usually J absolutely has to have Kraft Macaroni and Cheese on the weekends. But a few weeks ago he tried Ramen and decided he could “compromise” and have that every once in a while too.

Steve, in a hurry (and just as stressed as I was) just had pizza on his mind and said, “No, not tonight,” and closed the door.

J came running into the kitchen in full-fledged meltdown, “NO, NO, we HAVE to get bread sticks. I want bread sticks. I WANT BREAD STICKS!”

I’m not sure if it was anxiety because we always get bread sticks, or just plain old selfishness because he wanted bread sticks, but I knew we had a problem because he doesn’t handle either of those things very well. I came down from the step stool, paint brush still in my hand, with an open paint tray in the middle of the floor, and as calmly and quietly (I’m really trying to work on my “you’re driving me crazy/your tantrum is sending my blood pressure through the roof” reaction of not yelling back) said, “J, there is wet paint on the walls, and there’s paint on the floor. Please get out of the kitchen.”

But when J is in full-fledged meltdown mode, and when he’s at that place he wants to engage you in your space and pick a fight.

“Dad’s getting bread sticks, right? Right?” And then immediately came the baiting.

“What happens if dad doesn’t get bread sticks?”

“You can handle it,” I said, because that’s the line we always give J when he’s having a hard time with something. I should have said nothing. I know better than to engage him verbally, because that’s exactly what he wants me to do. It seems really strange, actually, coming from a kid who has been in speech therapy pretty much all his life and has a hard time with meaningful communication and yet when it comes to a verbal fight, he’s all in.

But I was tired, and starving, and I had paint all over my hands and in my hair, and on my clothes and I just wanted to be done with the kitchen and the concert and the night in general. And J was beyond the point of reason.

“You need to go to your room now. You can’t have a tantrum in front of me right now. There’s paint everywhere. You have to go to your room.”

“I’m not having pizza. I’m having bread sticks AND pizza. Not just pizza, bread sticks AND pizza,” he kept repeating. But after about a minute of crying and yelling, he stomped up to his room. And cried and screamed for about 5 more minutes, came back down again with big red puffy eyes (really puffy because he’s battling eczema around his eyes right now too).

“I’m going to have leftovers.” He announced.

“Wow. Yes,” I said. “Good idea to solve your problem.”

By the time Steve came home with the pizza, J warmed up his leftovers in the microwave. And ate 3 slices of pizza.

The optimist in me thought we’d be past the meltdown and tantrums at 13. But we’re still here. The good news is that, as crazy as the bread stick story sounds, his meltdowns have come a long, LONG, way. Just a year or two ago, we’d be engaged in this battle for at least 45 minutes. After 45 minutes, he would still be inconsolable. Steve would probably be headed back to Little Caesars to get a package of bread sticks. One of us would be missing the concert because J wouldn’t be able to pull himself together by then, even with winning the bread stick battle.

Helping J manage his emotions and deal with them in an appropriate way has been a struggle for as long as I can remember. In fact, that’s one of the main reasons he still is in speech therapy. J doesn’t have a stutter, lisp, or struggle with pronunciation. He struggles with meaningful communication, social appropriateness, and understanding other people’s point of view, and I owe a lot of J’s progress to J’s speech therapists. They create social stories to help him navigate stressful situations, they create social stories to help him know what to say. He has a class with other kids on the spectrum, other special ed kids, who also need to practice their speech and social skills. Sort of like W’s Smart girl books. A little more simplified.

J’s also become quite the chef in the kitchen. In fact, he has quite a few kitchen responsibilities like loading and unloading the dishwasher. He really thrives with responsibility. In a weird way I think it helps him regulate his emotions better.

There are no Smart Boy’s Books out there to help boys understand and navigate their emotions. (If there are any, PLEASE let me know). Most of the books under “middle school+boys+emotions” are parenting books, or books that are gender neutral in approaching emotions and social struggles. There are very few middle school boys books geared to the boys themselves that go beyond the puberty talk. As I’ve looked through books that might help J navigate the social emotional issues he will facing in the next five years and beyond, I’m finding that it’s really hard to find these books about boys for boys unless you are a boy on the spectrum. Books for kids on the spectrum are good, but I want him to see that other boys struggle and have questions about their emotions too.

J needs empathy, kindness, social appropriateness, and managing emotions spelled out for him. And I’m guessing he’s not the only boy out there. I’m guessing there are non autistic/spectrum boys who need some guidance in these areas too.

It’s actually one of the weird things about autism I’m really grateful for (not the tantrums), the weekly discussions on feelings, the instruction he gets from his speech therapist and psychologist. I feel like boys don’t get much instruction on how to navigate their emotions. It’s strange to me that we think that young girls are the ones who really need direction in this area or are the only ones who want to explore and talk about these things. Clearly boys struggle to understand their emotions and social worlds too.

J loves talking about emotions. He loves trying to understand other people, even when it’s hard for him. That’s why he’s always loved speech. And he gets excited to visit with his psychologist Dr. T.

And that’s why I’ve started reading , with W’s permission, A Smart Girl’s Guide to Knowing What to Say with J. Some of it is still a little “old for him” but I’m keeping that book on my radar. In fact, I’ve picked out some pages he can work on right now. Like “25 things to say after hi.”

So far, he’s into it. He doesn’t even care that it’s “for girls.”

 

 

 

Making Pictures out of Words

W reading to J, back when they were babies

One of J’s biggest academic struggles is with reading comprehension. In the beginning he was a fabulous reader. He could sound out words and burn through the early reader books because he’s good at individual words. He loves to figure out how they work together and what the rules are for putting them together. He’s always been a kid who wants to know the rules. (As I’m typing this I’m wondering if we should be reading poetry with this boy to help him build those images and other sensory experiences with words…)

There was even  a time where he was obsessed with synonyms, antonyms, and homophones. Especially the homophones. He just thought it was the greatest thing in the world that two words could sound exactly the same but be spelled two different ways and mean two different things.

J loves individual words but has a hard time seeing how they work together as a whole to produce something abstract such as an emotion or motivation. This is typical for kids on the autism spectrum. They don’t understand why people do the things they do in real life–why someone would say something to someone and turn around and do completely the opposite thing?–there’s no logic in that at all. As a toddler (and sometimes even now if he doesn’t know the person very well) he had a hard time reading how someone felt based on the expression on their face. When you read a story you have to make all these connections without any visual cues–all the cues are hidden in the words with nuance and meaning.

Reading novels for school has become more challenging over the years. Usually J and I have a copy of the book at home and we take turns reading sections of the book aloud. At the end of the chapter, my strategy is to usually ask him, “Tell me one thing you remember about what we just read,” and he will pick out something that caught his attention and then I can steer the conversation to other things in the chapter–questions about characters, things they like/dislike, what the character wants (or what/who is challenging the character). Then I write down short notes on what we’ve talked about so we can go back and refresh our minds later as the story progresses or if there’s a test coming up. It looks something like this:

J just recently finished The Thief of Always by Clive Barker (a fantasy book with magic–good fun for a kid who looks at the world in a very literal way 😉 ) for class and had a test over the book. I was able to see a copy of the test beforehand so I could help prep J to study at home. This test was heavily based on character profiles: what each character said and did, often direct quotes from the text. At first it was really overwhelming to prep him for it. J could barely get through summarizing the plot with help. How was he going to get through a test that was more character driven than plot driven?

Two days before the test, I came up with the idea of character profile sheets. I realized that J had no real pictures in his head of what these characters looked like, so I googled images of the characters from the book and assigned important plot points or quotes from the novel so J could visually see them. Descriptions of hair color or other physical features were covered by the picture. When I had quotes for or about the character, I included them in their profile. It helped reinforce the physical description, motives, or important events for the character. It really helped differentiate the three cats for J. He knew what roles the cats had in the story but would get the three confused as one character when I quizzed him. The pictures helped straighten it out for him.

 

For some reason, Lulu turning into a fish was something that really stuck out in his brain so the quote was easy for him.

Here’s a good example of how the description of an old woman was better reinforced by a picture. As we read the book, I tried to explain the concept of spider web hair, and J just couldn’t understand what that meant. I think he thought her hair was spider webs. This was a nice bridge of the figurative and literal description.

The 3 cats. J LOVED the cats, but thought the cat was just one character. This helped clarify that for him.

I’m always trying to think of creative ways to help J understand what he’s reading better, and the visual character profiles really helped for him. There are things that I would do differently for next time though. Next time we’ll try doing the profiles as we read along and not two days before the test. I’ll have J help pick out the pictures he thinks best fit the descriptions in the book and the pictures in his head. I’ll also see if we can get modifications in the test for a book like this–This book had twelve characters he had to identify and pair up with quotes and half of them had magical powers which was really hard for J to navigate.

It can be an awful mess helping J out academically. I feel like I come up with good ideas after the fact and it’s when I see the mistakes I’ve made that I know what to do and not do for the next time. Sometimes I feel like I’m failing in my attempts and just making him more frustrated about himself instead. But this time, I’m really excited to add this idea to our reading strategies, even if it was a disaster at times along the way. One more way to look a things that might help for the next time.

Just thought I’d share what we are trying 🙂

As a side note, and follow up to the last post, J got 44/46 on his Latin test! I really feel like he’s starting to understand studying strategies a little better!

 

 

 

 

Learning How to Learn

 

It’s taken the second semester of grade 7 to feel like I’m finally understanding how to reinforce what J’s learning at school at home. I feel like we’re starting to get a good system going with J’s paras and teachers in how to modify assignments, tests, and practice assignments that will help J learn the best.

J’s strengths lie in memorization, and he does really well with flashcards (homemade ones or through Quizlet. Are you familiar with Quizlet? It’s a wonderful free little app that lets you practice through flashcards, matching, definitions, etc). He’s funny with the memorization though. You give him a map of Africa and he can fill out all 55 countries in 2 min or less, but you give him a human body and it’s a lot harder for him to label that “map.” One thing I’m learning with him is that all skills aren’t equal. If it’s a subject he’s interested in, then you’ve hit the memorization jackpot (think superhuman skills–I’m not exaggerating on this). If it’s something he’s not interested in, he can still memorize it, it takes more time and diligent practice. That’s one thing that we’ve been working with his teachers and paras. Trying to get notes and terms and concepts home ASAP so we can start working on them weeks before the test (not a few days before). I know it sounds like a no-brainer, but it’s a lot harder than it sounds. It takes a lot of coordination, and a lot of stuff being sent home and sent back to school. I’ve been really excited this last month, however. I feel like we’re getting into that back and forth groove.

J came home with some AWESOME practice sheets his para made for him to help him study the human body. BIG versions of the traditional 8 1/2 x 11 computer printouts and laminated so he can use a dry erase marker to do that repetitive practice (also to accommodate his handwriting issues!). He also has flash cards to practice the functions and definitions of certain things (mechanical digestion, chemical digestion, arteries, etc). His science teacher has modified the amount of content J has to know (he has to label 10/16 bones on the skeleton, 4/11 parts of the heart–right/left ventricle and right/left atrium, etc). Enough to give him an introduction of the human body and practice a way of learning and studying without overwhelming him.

Labeling the ventricles on the heart

Identifying bones

Practicing the definitions through handwriting and modified paper

J is also a nontraditional learner. His body language can fool you into thinking he’s not paying attention, tired, or checked out. This first video shows him practicing Latin numbers. With his head on the table, it looks like he’s checked out, but if you listen to him, you can tell he’s really concentrating (and trying not to look at the answers on the table). Don’t judge my Latin pronunciation–the only language I know besides English is French, and J has already corrected me a few times of my French-ish pronunciation of Latin terms. This is one of a million reasons why his paras are so important–they can undo any damage I do when I don’t teach him things exactly right.

J earns jellybeans for studying masses of words or definitions. Since he has to learn his colours in Latin, I make him tell me what the Latin colour is and the Latin number of jelly beans before he gets it. Whether we’re studying Latin or the heart. It’s good “not studying” studying.

Sometimes we use Quizlet, and sometimes I make a homemade version. Here’s J practicing his Latin colours through matching.

I also try to mix up the ways we practice things (like the jellybeans). Here’s J identifying body parts by just touching his body.

It’s taken a lot of coordination and a lot of organization (personally–I am not an organized person by nature). I try to get as much of my work and writing done before the kids come home so we can focus the rest of the night on studying. Sometimes I have to multitask and make dinner, but we make sure we do the daily practice DAILY. I admit there are some nights where I just don’t want to do it (and think his paras can do it during resource) but in order for J to really learn (and understand what he’s learning is important) we need to reinforce at home. Sometimes it’s a fight. Most times he’s willing to practice.

It’s not Pintrest worthy, but here are my binders for J’s practice sheets and studying. That way I don’t have piles of papers on our counters and I can keep copies of practice sheets and Ziplocs for flash cards and other study helps with each separate subject. This has made my life a million times easier.

The funny thing about this whole study experience, is that I’m learning all of this over again as I’m working with him. I don’t know exactly where my trachea or small intestine is, and I get along just fine. I always Google things when I need to. I have a basic idea of what an artery is, but I don’t remember the exact definition. I know that blood flows in and out of our heart in different directions, but I don’t remember how or where that happens until I start reading his textbook again. J’s teachers and I go back and forth a lot on what exactly will be helpful for J to learn and what won’t matter in the end. But the more I work with him I realize, that the content he learns now isn’t the only thing that matters. Most of us forget at least half of the content (or more) learned in middle school and high school by the time we graduate. It’s the practice and discipline and thinking skills that are the most important for J to learn, because those are the real life skills most of us develop in our public school experience. It’s those skills that take us into our post secondary education or job sites and it’s those skills we practice daily that get us the knowledge that’s most applicable for us.

So on the days I’m frustrated when J forgets where his gastrocnemius muscle is (ps, it’s not in your stomach like you’d think) when he absolutely knew where it was the day before I try not to get discouraged. Because in the end, learning to learn is a process. And that’s a whole lesson in itself.