Hey everyone! This week I moved my blog to www.thisautismlife.com. Hopefully it’s a little easier to navigate. This week’s post is on how hard it can be having a sibling with autism. Our W is such a trooper! You can read this week’s post here: http://thisautismlife.com/bittersweet-moments/
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.
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.
Two weeks ago J and W were in the middle of DSW, patiently waiting for me to decide between five different variations of the same white sneaker.
I walked down the aisle going back and forth between the shoes on display, while the kids dragged their feet behind me.
“It’s lunchtime mom, I’m hungry,” said J. It was actually way past lunch time. It was 2 in the afternoon. I knew he was anxious, but I knew I still had probably 15-20 minutes until we were in the pre-meltdown zone. The kids had a snack before we left, which was how we gotten to this point, but J has ideas about lunch and what it should look like—a steaming hot blue box of Kraft macaroni and cheese in a bowl with Parmesan cheese on top. I didn’t have this flexibility to push lunch until 2 pm two or three years ago. Two or three years ago, lunch time was at 11:40, no matter where you were. The world stopped at 11:40, and if you didn’t have that mac n cheese in front of J, you’d have an epic meltdown.
“Why don’t you just choose one?” W asked, clearly done with the whole ordeal. But I couldn’t, because I’m the type of person that takes forever to make a decision. Having five options doesn’t help the situation at all.
The store was packed. It was a holiday weekend. Holiday weekends in Fargo mean Canadians come down to shop too. Mix that up with all the moms who take their kids shopping because they have to entertain their kids on a day off, and shopping can be a nightmare. My kids weren’t the only ones having a miserable time.
J had resigned himself to sitting on one of those little stools—the ones with the slanted mirrors designed to let you look at your feet—and W had convinced me to let her have the phone (when I got home, I discovered that there was a photo booth’s worth of selfies on my phone).
Then, four or five aisles down—close to the men’s section, we hear this really loud, obnoxious, snappy, “Mom, Mo-om, MOM!”
I didn’t look over to see who was yelling for mom—but it sounded like a teenage girl. At first, it sounded like a rude teenage girl, trying to boss around her mom, but as she kept calling for “mom” it seemed her behavior could be because of other things. It was as if she didn’t realize she was being that loud. Maybe she had autism, Down’s syndrome, or some other developmental delay. Maybe she was just a rude teen. It didn’t matter. Both mom and daughter seemed to be having a hard moment. It happens to the best of us.
My kids didn’t flinch. J was kicking the stool absent mindedly, W was zombied-out with my phone. But there were two other ladies, in their forties, in the aisle with me, and it bothered them. But they didn’t go over to help the girl. They just started to giggle and then squawked, “Mom, Mo-om, MOM!” to each other.
I hate to admit this, but I didn’t do anything. I wanted to say something to those ladies but I didn’t. J laughs at things when he isn’t comfortable, so I get it. But these women were older. And I’m guessing more socially savvy than my autistic son. After a minute or two, we didn’t hear anything from the teenage girl a few aisles down. My kids were at their breaking point with the shopping trip, and I decided to leave before we had a loud outburst of our own. I still hadn’t made a decision on shoes.
On the car ride home I had a million questions (and lots of guilt) running through my head. What should I have done? Do you say something to women just a few years older than you when they’re being inappropriate? I know there are social rules about correcting someone older then you. Do you say something when it’s not your kid or your business? Maybe I was making the whole thing up, my reasons for the teen’s behavior, maybe it was just a really rude girl talking to her mother. But still, squawking and laughing is inappropriate. I’m guessing “MOM!” was having a hard time no matter what the circumstances were. I should have said something. When J was in the full fledge autism toddler stage, always in a tantrum puddle on the floor in some public place, and the rude older ladies would inform me of all the wrong things I was doing as a parent, all I wanted was someone to say something. I wished someone would have stuck up for me.
This first week of April ushers in Autism Awareness month, and with Autism Awareness month comes all sorts of things. The lists of autism symptoms, the statistics, and autism stories will be all over the internet. You may see buildings downtown “lighting it up blue” to show support and awareness. Yes, it’s important to be aware of autism, its symptoms, especially if your child or a child you know seems to be on the spectrum. Yes it’s important to know about autism so that you can interact with and help those on the spectrum. Those things do help. But as a mother of an autistic child, the thing I’d love the most would be an increase in kindness. You don’t have to know anything about autism in order to be kind.
We’ve had a blue light on our porch since mid-February, not for autism, but because people around us in our community have been struggling for very different reasons. The whole city of Fargo has had a blue light porch vigil to show support for an officer shot and killed in the line of duty. The community wanted to show support for his family and his fellow officers. People wanted to help. It’s now April and the blue lights are still sprinkled everywhere around the city. It’s been absolutely amazing to see the ways people of have reached out with kindness in ways beyond the blue lights.
Blue lights. Blue lights for officers and blue lights for autism. Two very different reasons. Blue lights for me now are a reminder that we need to be kind, gentle, and supportive. People hurt at different times for different reasons. It reminds me how fragile we humans really are. We need to be there for each other.
We don’t need rude laughter, we don’t need squawking. No matter what the nature of the hard thing is we’re going through.
I’ll never know that mom and daughter’s story. It doesn’t matter. I don’t have to. It’s not my place to judge or make assumptions. Next time I have a DSW moment though, I think I know what I’ll say. Next time I’ll open my mouth and say, “let’s be kind.”
At least, that’s, what I hope, I’ll have the courage to say.
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 3rd 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.”
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.
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?”
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.
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.”
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!
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.
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.
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.
I have a world map and a map of the US folded and stacked on top of my jeans in my closet. J’s framed Imagine Dragons poster is also in our room, leaned up against the foot of our bed. They’ll be there until Tuesday, fingers crossed, until J earns the right to have them back.
Right now when I get dressed or go to bed, I have these visual reminders of how much space J can take up in my life. It’s easy to let J overtake every aspect of my life. Space is something I have to fight for. It doesn’t just happen.
I got married young (just shy of 21). I had J less than a week before turning 22. J and autism have been my entire adult life. Maybe that’s why I fight so hard to make sure I have my space without him.
It’s easy to become an autism martyr. It’s easy for autism to creep into every thought you have. It’s an easy go-to place to wallow in when you feel like your life’s not going the way you want it to. That’s why it’s so important that I fight for my space, because it’s the only thing that keeps me sane through this whole thing. I still have my life to live.
I was “me” before Steve, J, or W. I’m still that person (yes, evolved a million times over from the experiences I’ve had over the past 15 years married with kids) and I’m always trying to make sure I learn and improve on that person too. It’s important to my family, I feel especially to my daughter. She needs to feel the right to develop herself in the ways she needs to as well–unlike me, her life started with autism. Even though I love my children, I’m not just their mother. I am so many other things too. It’s dangerous to get stuck into seeing yourself as one thing, especially a mother of an autistic child, because you can’t see the myriad other things you are too.
It’s hard to say if I’d feel the same way or not if J didn’t have autism, although I’m guessing I probably would. I’ve needed that “me” time before we knew J had autism. We were a poor grad school family when Steve was attending the University of Illinois and I substitute taught in the Urbana school district every Friday, while pregnant with W. The extra money was nice, but getting out of the house once a week, being an adult “me” was worth much more than the money. Raising another human is an especially exhausting, all-consuming experience. I had to step out of that, even for a short amount of time, on a regular basis.
When W started kindergarten, I really felt I needed to go back to school again. With a lot of Steve’s support (he took a sabbatical during some of that time so I could TA and go to school full time) I was able to graduate with my MFA. I had gone back and forth between speech therapy (or some other education emphasis) and an MFA. Speech therapy (and even education) required that I go back and take more undergraduate classes before a masters program. My life track before marriage and kids was in English, so the MFA won out. A few weeks into the program I realized how important it really was that I develop “me” in other ways than in the special needs department and that I was really starving to develop my own interests.
Over the years I’ve realized that in all the ways I fought for my space, I’ve ended up reciprocating them back to J and my family. My experiences in the Urbana Public School District helped me understand the special education process better, even when I didn’t have a stake yet in special education. I could see teacher’s perspectives and how challenging their jobs could be. I’ve been able to see hundreds of kids with different backgrounds, different learning challenges, and different learning strengths that have helped me understand my kids better.
My MFA experiences have been invaluable too. I use one of my favorite reading comprehension strategies taught in my TA class with J on a daily basis. Understanding the human experience and exploring human motivation has helped me imagine a little better what J’s world probably looks like. My creative nonfiction class changed my whole perspective on what reality means to each person, and how even two people sharing the same experience will tell their stories in very different ways because of how they interpret the world around them. Creating fictional stories outside of my experience helps me understand others better and has helped lessen the pain of well-meaning, yet hurtful comments I’ve received. It’s helped me escape my life in healthy ways when I need to the most.
I try my best to read my family’s cues to make sure there’s a balance. Sometimes you get stuck temporarily and a balance can’t be reached, and things are just hard for a while. Even though both my kids were in school, I know the last few months of my MFA were hard on W. I spent many late nights on thesis revisions, I’d grade papers after school or cram reading assignments in while my kids played outside. I’d set dinner out for the family, or Steve would make something, and I’d head out for night classes and workshops. It was something everyone in our family had to make adjustments for. Right now our family is changing again. J needs special attention sometimes with the ups and downs of middle school, and W has her own share of challenges too. Sometimes I have to put off my own projects temporarily for them. But it’s okay, because we all have the right to be needy sometimes. There’s a lot of give and take that happens here.
I know every family, every relationship, requires negotiation of space. It’s a dance that needs to be monitored constantly. Sometimes I’m better at managing that dance than others. Sometimes I play the autism martyr supermom and forget to take care of myself and sometimes I play the selfish, self-pitying mom and forget that sometimes I need to wait my turn too–family issues function on a triage system. I think the most helpful revelation for me through all of this is that our family is made up of constant, fluid seasons of need. Everyone in our family should have a turn to have their needs met, especially when autism is constantly monopolizing that space.
When J was little I treated his life and experiences as a recovery. I was going to make him better. I knew there was no cure for autism and that because of the complex nature of the neurological disorder there might not ever be one. But I was on a mission to make as many of his symptoms disappear as I could. I was going to make him as non-autistic as possible. I was going to fix him.
I cringe when I think about the perspective I had. I would like to think I’m independent and strong and noble, that I see the injustices of discrimination in the world and I stand up for “the underdog.” I’m not as brave as I’d like to think I am. I feel like I’m a little like Katharine Hepburn’s character in Guess Who’s Coming to Dinner. It’s one thing to say you believe in embracing differences and different perspectives but sometimes it’s a different story when that different person is your own child. There are times I don’t like the fact my kid is different. It’s a humble pill to swallow.
I’ve mentioned my feelings about milestones, the shame I feel sometimes when J’s behind in this post here, and I’m trying to be better at this. I’m trying to celebrate the little things more because J’s life isn’t a recovery. It’s his life. It’s the way he experiences the world and even though it’s not the way I see or do it, or the same way his friends are seeing and doing it, that’s okay. It’s his life. I need to be better at celebrating his life.
Here are three celebrations this week. They’re little and big at the same time. I feel like these middle school years can be so volatile, but this week has shown me they can be amazing too.
Self Restraint:
Once a week Steve and I have our dessert night–dessert just for us, not the kids. W will express her displeasure the next day. J will take his fingers and pinch a bite out of the leftovers if we’re not looking and so we always have to hide things in the kitchen from him. His impulsiveness is a huge struggle and I know he’d never pass the marshmallow test. At least that’s what I’ve always thought. This week I had forgotten to hide the last ramekin of molten lava. Later that day it remained untouched. By night it was still there. J had manged to conjure enough self restraint leave it alone.
He’s also shown self-restraint in other ways this week. Over the weekend we were watching Netflix and a “violent scene” (two people dueling with swords) came on screen. J really doesn’t know how to process violence–and I’ve realized it’s a hard thing to teach a child with autism how to process violence in a socially acceptable way. It’s not just J. We’ve been to movies before with special needs kids in the audience and they’re always laughing at the most “inappropriate times.” Time after time I’ve explained it to J this way: “When the bad guy falls or gets hurt, it’s okay to feel a little good about it. If a bad guy gets hurt in a silly way, it’s okay to laugh. If it’s the good guy who’s getting hurt then it’s not okay to laugh.People think you’re a bad person if you laugh when a good guy gets hurt.” Even as I type this I see how ridiculous it sounds. I guess we’re a little ridiculous as a society sometimes.
I’ve tried explaining this to him for years, but no matter the situation J always giggles when people are fighting or hurting each other because that’s the only way he can process it. This weekend, as the two men were fighting to the death onscreen, he announced, “This is violent, I have to leave now, I’ll be back later,” and he left the room. Steve and I were floored. We had never introduced the concept of “just leaving” to him before. We had always just tried to coach him through it, rattling the “rules of violence” to him again. It’s just a little thing in the whole scheme of this last week. But I feel like J’s hitting a new milestone too. He’s gaining more confidence in being in control of his thoughts and actions.
The PACER test:
This week I got a text from J’s para, letting me know how well J did in PE that day. They had run the PACER test (The Progressive Aerobic Cardiovascular Endurance Run (PACER) is a multistage shuttle run . . . designed to measure aerobic capacity, which is characterized by endurance, performance, and fitness. The objective of the PACER is to run as long as possible while keeping a specified pace. Students run back and forth across a 20-meter space at a pace that gets faster each minute. A point is scored for each 20-meter distance covered. The test is easier in the beginning but progressively gets more difficult.) (Nova.edu) and J had scored a 53 (the average range for his age is between 41-78) and was one of about 6 kids still going at that time. Just two years ago, J wouldn’t step in a gym. He wouldn’t run when asked. Now he loves it. He’s running with his peers. Major progress!
J and Fred:
Fred, our senior dog, has been struggling a little lately. His hips are bothering him and some days he struggles to walk. Sunday morning was one of those days. We gave him some medication and decided to make sure he took it easy. Even though he’s an anxious dog and ABSOLUTELY NEEDS exercise before we kennel him, we decided to hold off on the exercise because he was struggling so bad.
When we came back from church we came home to a messy dog and a messy kennel. It stresses J out if Fred messes his kennel, but Sunday he said, “I want to help,” so I carried the dog upstairs and J helped me bathe Fred. I held up his paws while J took a rag and very carefully cleaned each paw off. It was really sweet how gentle he was. It made me realize that J is capable of compassion and responsibility and I think I’m guilty of seeing J as always being the one who always needs to be taken care of. He can take care of others too.
This week J has been making connections on his own about who he is and how he wants to interact with the world around him. It’s not at the same rate and in the same ways as his peers most of the time. But it’s an amazing thing to watch him start to figure himself out.
I think it’s almost impossible as a parent with a special needs child to not be constantly thinking about the future. I’ve been guilty a million times over. I’ve kept a running list of potential professions for J since he was 5.
-At 5 I thought he might have a potential career as a mail carrier. He created mental maps and physical maps of the neighborhood constantly, complete with Christmas lights, basketball hoops, and flags. The only big hang-up was dogs. At that time, J was terrified of dogs.
-I’ve gone back and forth on the idea of a grocery store bagger or even cashier. It’s a low skill job, and the days I feel like he’s failing dismally in academic areas, this is the job that comes to mind. But it’s not the perfect one either. At 7 he would have meltdowns if he saw people with freckles. He’s over that now, but he gets fidgety over spellings and numbers. Would he have a meltdown if he saw a name or a brand with a “misspelled” name? If a total rang up with a “bad number?”
-At 10 I thought he might have a future as a bus driver. The driver on my route to work was definitely on the spectrum. I learned a new obscure fact about the Beatles every day. If I was lucky he’d mix it up with some Buddy Holly trivia. But would J ever be able to learn how to drive? Would his brain blow up if he couldn’t hit the stops on time?
I keep a list of a dozen possible professions for J in my head. I’ve come up with stenographer, and proofreader or copyeditor. I’ve come up with the possibility of community college or a late entry to college (as a nontraditional student at 30 something. I had a student once in one of my classes who started college for the first time at 35 because of her anxiety issues). I keep the possibilities filed away because I want to make sure that once J graduates from high school, we’ll be able to find a place for him.
This week we his future was lightly touched upon at parent teacher conferences. I got to sit down with each of J’s three core teachers and listen to how they see J, how they’re trying to reach him on a relational level, and how they’re trying to reach him at an academic level. The question on everyone’s mind is, “how do I know if what we’re teaching J is what J needs?” What will he need to succeed in the future?
The answer is I don’t know. Do we push the more complicated steps in algebra when he’s frustrated with the first steps of algebra? Does he really need to know the pythagorean theorem or not? In reality, the answer is probably no. He will probably get along fine with a more “applied math” approach. In fact, I have gotten through life with just “applied math” skills. I have an MFA and not once have I had to graph an equation or use the pythagorean theorem since my first year as an undergraduate. I work at a university and can function just fine without the “higher math” in my life.
Right now I feel that it’s important to keep trying though. It’s by throwing things at J that we can find out what J is good at and not good at, because the truth is I really have no idea. We can see where his interests are and how to push him in those areas. He might be terrible at algebra but really good at geometry. He may be terrible at reading comprehension but a whiz at grammar and usage.
The more I try to plan J’s future out, the more I try to determine what he’s good at and not good at, the more I realize it’s a futile waste of my energy. He is always changing and progressing–dramatically sometimes. Strengths come out of nowhere. Two years ago, J became obsessed with Presidents of the United States. He knows the order of the 44 presidents starting with George Washington forward and can do it from Barack Obama backward. He knows when they were all born, died, how long their terms were, when their terms were. He just picked it up and he’s been on fire about it ever since.
This year it’s been the same way with geography. He knows almost every capital city of every country on this planet.He’s just started World Language Survey and within 2 days he could identify all 16 phrases—including differentiating between Arabic and Urdu—and I know it’s because of his interest in countries that he’s interested in what is spoken in different countries. We’re only a couple of weeks in—I don’t know how he’ll pick up new languages—but he’s incredibly smart at English grammar and usage. At the same time, he could be terrible and another language’s grammar and usage. I don’t know, but I’m glad we’re giving him a shot in World Languages.
Academically, he’s good at memorization. He’s bad with abstract concepts. It’s easy to feel discouraged and feel like he’s really “learning something” when he can’t yet apply a lot of his knowledge.
When Temple Grandin (an autistic woman and professor and Colorado State University in Animal Science and who also swears off Algebra ;)) came to Fargo back in 2013, one of the things she said that stuck out to me was, “It’s not just memorization. It start’s that way. The more they get out and learn specific examples, it builds their Google base.” Being exposed to those concepts–even if he doesn’t understand them all, builds his Google base.
She also talked about starting with “areas of strength” and spreading out from there. J loves maps—especially Africa. That’s a bridge to vocabulary words in his unit that have more social constructs around them. I really believe the more times he hears the word, “refugee, Apartheid, push and pull factors, colonization” at home or at school, the bigger we’re building that Google base. It will be there ready to access when he’s able to figure it out.
There’s no way to know an autistic child’s threshold for learning and growth—which gives you hope when things get rough. But in the back of your mind you are always terrified of failing them because you don’t know how far they can go if they have the chance. You don’t know how much to push or if it’s too much. You see stories like Carly Fleischmann‘s or Martin Pistorius‘s and you’re scared to stop pushing. I felt that from the teachers on conference night. I know it well. I think about it every day too.
You can watch Carly’s amazing story here:
So I keep monitoring, pushing and engaging him. I’m asking his teachers to keep doing the same. I keep that list of potential professions running through my head but in reality I can’t really plan his life out for him at this point. He changes so quickly. And the world is changing just as quickly too. Well educated millennials can’t get jobs right now. Technology is also eliminating jobs. Even if he were “neuro-typical” I couldn’t plan and predict his life for him.
For now, I think the only plan to go in is this: make him the best person he can be today.
The Messy Art of Parenting Autism 