Big Problems/Little Problems

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

J enjoying his creation of a peanut butter Oreo blizzard

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

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

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

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

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.”

 

 

 

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.

Life Lately

J was so excited to participate in hat day on Friday. Last week we had a police officer killed in duty and his school was doing a “hat day” fundraiser. 

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: 

3 years ago, J ran his first kids run through the Fargo Marathon. He tolerated the experience, but really wasn’t a fan of running.

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.

Prepping for an IEP

 

J and W at J’s early intervention preschool in Lawrence, Kansas.It’s hard to believe J has had regular IEPs years before this!

J’s IEP is coming up this week.

It’s something I’ve been doing for as long as I can remember.  I have binders full of Assessments, Evaluations, Re-Evaluations, Progress Reports, IFSPs (an IEP for kids under 3), IEPS (an Individual Education Program once a child turns 3),and behavioral  assessments. I even have copies of “my rights” as a parent of a child with disabilities from three different states.

I can’t imagine what it would be like to be a parent without all of these binders. To just send your kids off to school and collect report cards a couple of times a year.

Over the years, I’ve learned some things along the way—things that go past the anatomy of an IEP. There’s plenty of websites out there that explain that like this one here. But I’ve learned some things about the mental/emotional aspect of the IEP meeting. And sometimes that’s a little harder to navigate than the goals and objectives and the construction of the IEP itself.

Here are seven things I’ve learned:

1. Be objective—as objective as you can. I know it’s hard as a parent. You have to leave all your emotional crap at home. If you really have a gut feeling that your child isn’t understanding, doing, learning, something, don’t hide it. Bring it up. The good, bad, and the ugly. Just because your child is struggling, doesn’t mean you’re a bad parent. Be willing to admit that your child is having a hard time keeping up or behaving him/herself. If you’re frustrated with how things are playing out at school, don’t lash out on staff. Look at the current plan and see how you can improve that instead. It sounds very clinical because in some ways it has to be. Doctors can’t let their emotions overcome their thought processes when helping their patients.
2. Make sure to bring up your child’s strengths: I think any parent—those of neurotypical kids as well—can say that their child behaves differently at home than they do at school. Often, with kids on the spectrum they feel more comfortable in their home environment and can show strengths in learning and talents that might not show up at school. Make sure you notify the team of these things. They may not be seeing them.
3. Be an advocate for your child: If you feel like your child isn’t getting the services they need, tell the team. Hopefully you’ve been in constant contact with the team before the IEP (and so your concerns don’t seem like they’re coming way out of left field), but if they still aren’t addressing your concerns, make sure you bring them up and hold your ground. If there is something your child really, really needs, make sure that it’s included in the IEP.
4. Come prepared. Review past IEPs and assesments. Look at the progress reports of past goals. Which goals were the most successful and why? Which goals were the least successful and why? This will help you gauge where the best place/level to challenge your child and encourage the best success. Sometimes goals are too lofty and have to be revisited for the next IEP. Sometimes they’re too easy and they need to be revisited for the next IEP. Sometimes they’re too specific or too general. If you’re receiving services outside of the district, make sure you include any information from those services that might be helpful.
5. Prep the team before you get to the meeting. Write a little summary of what you’ve been seeing at home (both the positive and the negative) and send it out. I find there’s limited time in an IEP meeting and there’s always so much I want to say. If everyone’s read the summary before the meeting, I feel the team knows better where I’m coming from, and hopefully we can be more efficient with our time.
6. Be a good listener. There’s a lot of group dynamics happening in an IEP meeting, and different people have different sets of information/perspective that others in the group don’t have. Try to be fair and make sure you listen to everyone’s voice. It’s really easy for one person (yourself included) to dominate the conversation.
7. Remember that this is one moment in your life and your child’s life. It’s easy to get overwhelmed and feel like you’re drowning on all the things that need to be “fixed.” But every child is constantly evolving. That’s why your parenting strategies become obsolete in a few short months, weeks, or even days after you’ve come up with some brilliant plan, and you have to figure out something new again. As J would say (reciting one of his mindfulness apps), “It isn’t always going to be like this. Thoughts (substitute hard things) come and go like leaves on a river.” Tap into those mindfulness strategies. It will also help you with #1.

As I’ve prepared for this round, I’ve had some new insights through looking at J’s past IEPS. I understand J’s behavior goals will be important to discuss in this next IEP meeting, but I’m also anxious to talk about his academic goals as well. While going through these documents (all the way back to 2005) I’ve noticed that over the years the IEP goals have focused heavily on behaviors (appropriate class behavior, reducing outbursts, and using language to communicate needs). These goals have been on every IEP J has ever had in some shape or form. In fact, on one of J’s eligibility assesments (under “background information”) it states:

“Records indicated he entered school with a tremendous base of concept knowledge and age-appropriate pre-academic readiness skills. J’s weaknesses have consistently been in behavior. His records show IEP goals attempting to increase prosocial interactions with peers and decrease disruptive behavior. J’s previous district stated ‘He displays a high level of stereotypical repetitive behaviors that interfere with his learning’ (November 2007).”

J has been able to “muddle through” academics over the years. He has an incredible memory so math has been historically a strength for him, as well as spelling and grammar. In fact, he came into kindergarten being able to spell at a second grade level, read basic sight words, and new his basic math facts. Over the years, modifications have been made for him in other areas (such as reading comprehension). But now I feel like we’re hitting a turning point. He’s been slipping in the academics category. Now that we’re in middle school he needs to learn how to “take tests.” He needs to learn to study for a test to if he’s going to be able to “muddle through.” Last year he was dismal in these areas, but this year we’ve been seeing glimpses of progress at home. We’re starting to figure out how to get him to “study.” How to get him to work “independently.” Not at grade appropriate levels, but he’s learning the concepts. And I can’t help but think that in the end, knowing how to “do the task” and consequently, eliminate half of the frustration, might improve behavior and attention at the same time. Give him something to encourage prosocial interactions with peers. We’ll see.

I have a love/hate relationship with IEPS. I’m excited to see how J’s grown and at the same time I can get discouraged that he’s always behind in something. That’s why #7 is probably the most important for me personally. I have to remember that Rome wasn’t built in a day.

Math Update:

Steve marked this. The American system of marking makes me smile. In Canada, you put a check beside the correct ones, an “x”by the wrong ones. In the States, you just put a check by the wrong ones. Steve added stars to the correct ones to make J feel good about himself.

The last two weeks we’ve been working on adding and subtracting integers with J. Every day. I decided to suck up all my math phobias and to try to figure out how to get J to learn this. I printed off free worksheets from mathdrills.com. Easy EASY integer problems he could do in his sleep. I wanted to make sure he REALLY knew the rules of integers. After a week and a half, I decided that it was time for J to do the whole sheet on his own. It took him 8 min. Alone in his room. No hovering to tell him to focus and do the next question. No talking through the steps with him. He felt confident (and proud enough) to do them ALL ON HIS OWN—FOR THE FIRST TIME EVER. NOT ONCE DID I REMIND HIM TO SIT BACK DOWN AND DO HIS WORK. He got 22/30 right. 72%. And the next day doing his real integer homework, with larger computations, was SO MUCH EASIER. Because he can do the larger computations without the integer mumbo jumbo. He was doing larger computations in grades two and three, and yet for the past few weeks in school he’d been bombing every worksheet because of the addition of integers rules.  It really confirmed to me that he needs to practice the steps as simply as possible—over and over and over again—he’ll have no problem applying them later.

See? Like I said, they’re constantly evolving!

 

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.”

 

Little Changes and a Step Closer to Empathy

Fall is in full force here in Fargo. J insists that our fridge is stocked with chilled cider and that every morning starts with hot chocolate chip muffins. He has set ideas about these things.

I insist that J looks for the changes in the trees as we walk to the high school for XC practice. Fall is by far the best reminder for me that little changes happen every day. The way that the tops of a maple catch crimson one day and in a few more days the fiery red has spread to the next tier of branches and then the next week a new tier catches fire. When I watch the trees I’m reminded that these things take time and that most changes aren’t baptisms by fire. They happen moment by moment. Trees don’t turn in a day, or even at the same time. J and I talk about this every day when we walk to practice. We make a game of finding the new things.

This week we’ve experienced little shifts in the J world. When J gets out of school his para and I have a little “2 minute replay” on how the day went. One thing his para mentioned this week was how math is becoming a struggle for J. He’s having a hard time organizing and executing the multiple steps now required to make it through a problem. My heart sunk when I heard this. This is the one thing J has always been able to do since a toddler. It feels like sometimes we’re starting to lose some of his core strengths. And let’s be honest, math isn’t my core strength.

“He’s doing really well in Language Arts though. He’s doing really well in comprehension. He had no problem with it on his last test on Thunder Cave,” his para tells me.

What? Reading Comprehension? When did this switch happen in his brain? This is something he’s struggled with his entire life.

One switch I’ve noticed this last month is that J’s been making progress socially. I notice it as we sit in the car waiting to walk up to practice. He’ll open the door and yell out, “Hey L! I hope you have a great weekend!” or “Hey, K! I’ll see you tomorrow!” No Chevy talk (see this post). 100% appropriate, on topic, short and sweet interactions.

Friday was J’s birthday party and J was more than excited for it. He just went ahead, asking kids on his own if they wanted to come to his party. We’ve done a movie night for every birthday for as long as I can remember. It’s the easiest for someone who struggles with social interactions. You spend the first half hour eating pizza while kids trickle in, then you start the movie (which is usually over an hour), then you eat cake, then parents arrive for pick up. It’s the ultimate autism party (or first date). You get to hang out with someone without actually have to interact, and both sides usually end up having a good time.

This time we tried something different. We held a karaoke party instead. Eight stellar kids from school came over to eat pizza, sing, eat cake, and jump on the trampoline. When the last kid left Steve and I were floored. How did that just happen? We had a successful party with successful social interaction. Sure, J was his quirky autistic self, but he took turns with karaoke, listened to other people sing (without getting impatient or complaining about the song choice which is what he does when we do it together as a family). Once again, no Chevy talk.

Seriously, some of the best kids on the planet. If you think the world is falling apart, you should meet these kids. They’ll blow your mind.

Love the look on J’s face.

The next morning J was relishing in the post birthday glory, but the XC team had a meet in South Fargo and I thought it would be a great opportunity for J to support his teammates. Keep the positive interactions happening, right? After breakfast when I told him that we were going, he told me flat out, “No, I don’t want to go. I don’t want to do that.”

I asked him how he would have felt if none of his friends came to his party. “They have to come to my party, they’re my friends,” he said, almost as if they had no choice in the matter. I told him that he had to go cheer on his teammates because “they are your friends and they expect you to come.” He still wasn’t happy. After all, the world revolves him and we do things the way he thinks they should be done. Because autism.

We showed up at the meet and the middle school girls ran first—in fact, one of the friends who showed up to the party the night before was there. He cheered out of obligation. Only because I told him to. His heart was definitely not into it. In fact, he kept asking for the Gatorade we brought along, (just in case) because it was supposed to be hot that day. He kept asking for it (very loudly) as these poor kids were running by, thirsty and exhausted. I had to explain to him how rude it was to ask for Gatorades in front of runners who were running but he didn’t buy it. He was thirsty and that’s all he could think about. Himself.

The boys at the starting line. Watching them gives me those nervous race day butterflies!

By the time our boys ran, J was very impatient. He wanted to go home but I insisted we stay. He cheered on the boys just like he did the girls—a halfhearted effort, but he was there, doing it. Because I kept saying, spelling it out to him that “when we are friends with someone, we are there with them. Physically with them. They see your body here and they know that you are their friend. Just like your friends were there, at our house, for your party.”

At the end of the race we met up with our small group of middle school racers as they were choking down their water. They were genuinely excited to see J there. They kept saying over and over, “J, we’re so glad you came to watch us run!” Sweaty high fives all over the place. And J picked up on that because he’s starting to read—understand genuine-no-strings attached-no ulterior-motive-emotion. It was the first time all morning he was glad to be there. The meet was still about him in his brain—I know that—because seeing them happy made him feel good about himself (yes, it’s still very selfish) but it’s a step closer to empathy. It’s a step closer to understanding the people in the world around them.

J cheering on one of our runners.

I think of his para’s comments on reading comprehension. I’m not sure why it’s improving. Maybe it’s all the books we read every night. Maybe it’s the reading comprehension app we try to use every day. Maybe it’s a combination of things. Life experiences—having friends come over, being there for friends, maybe that’s helping him understand things better. There’s a strong relationship between the two. More and more research is coming out that kids need to be taught empathy—especially boys. They don’t necessarily just “pick it up.” There’s also research coming out that reading—especially fiction—helps people develop stronger feelings of empathy. As Atticus Finch says: “You never really understand a person until you consider things from his point of view… Until you climb into his skin and walk around in it.”

We’re not ready to walk around yet, but we’re getting closer. Being in the same space is a start.

Whatever is happening, we’ll take it. Even if it means we’ll be working more on math…

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.

My $64,000 Question

Enjoying the last days of summer

It’s the third day back into school and I’m exhausted. Some of it has to do with my wrestle with the Neti pot and the lack of sleep I got last night due to allergies, but most of it has to do with the emotional up and downs of starting a brand new school year with a middle schooler with autism.

You think I’d learn this by now, being a somewhat seasoned adult (right?), but I’m constantly forgetting transitions happen all the time. I think most of us think of the big transitions: weddings, baby births, high school graduation, empty nesting, retirement, etc, but I know I’m forgetting the ones that seem to happen every few months. This summer we adjusted our routine a lot. J woke up, went for a run, practiced piano, we worked on reading skills, math skills, any other school prep we could think of, played, had dinner, played outside again as a family, and then after the kids went to bed I worked on my part-time job until I went to bed. Of course, we went on a few trips so we had to figure out our routine again on the fly, and then we were back to our home routine again. And then school happened.

I’m not going to lie, I was ready for this transition–sort of. I was ready for for W to not be around teasing and complaining about J–which was getting worse every day we got closer to school. I was ready to be able to do my part-time job (which I LOVE–it’s the best job ever–I can keep my brain from going to mush and still spend time with my kids) during the day again. Working with J practically one-on-one all day and then my “downtime” filled with more work was making me pretty batty by the end. Just ask Steve. There may have been one or two emotional meltdowns.

But I wasn’t ready for J to go back to school. Last year–his first year at middle school was hard. The hardest year we’ve ever had in public school. Between a jump in homework and academic expectations and behavioral problems and adjustments we came out of that year a little battle-scarred. I wasn’t ready to sign up for that again.

Because for some reason, J becomes a completely different kid when he leaves our house. Especially when he goes to school.

Middle school registration

Last week, we went to back to school night. W and the grade six class had their orientation 20 minutes before J’s grade seven class, so Steve took W while I drove around with J to kill time until J’s orientation and out of nowhere we started having this conversation. A really great conversation. J started off by talking about the new school year, specifically what year he’ll graduate middle school in and then high school. He asked me what happens after high school and I dodged the question because with him I really don’t know yet what that looks like.

“Hey mom, look that’s a crazy orange car!” He says pointing out the window. He’s forgotten his post high school question and has moved on. “Why do people choose that color of car–that orange color.”

“I don’t know, J,” I say, because I don’t. It’s a pretty ugly color if you ask me. “Our family always buys used cars and we really don’t get to pick the color, but some people buy new cars and they get to choose the color. What color would you pick?” I ask, not really expecting an answer, because I think his brain’s moved onto something else.

“Black,” he says, not even skipping a beat. Which really surprises me, because that means he’s thought about this before–and I see a little glimpse of his personality. So I prod more.

“What car would you buy?”

“A Chevy trailblazer.”

“Wow,” I say, impressed again. “Do you know what kind of car I’d like to get?”

“No, what?”

“A Prius. Like our friends have. I want to help out the earth and use less gas,” I wonder if I could even venture into an explanation of global warming with him, but by now it’s time to head back to find a parking spot and mentally prep him for orientation.

He survives orientation well enough. It’s in the gym, and he has a thing with gyms. A fire alarm went off while he was in the gym back when he was in second grade and he will probably remember that for the rest of his life. In fact, he can tell you the date AND day of the week if you asked him. During orientation, a parent was standing right beside the fire alarm pull station and that was sort of freaking him out because J was afraid the parent might accidentally set it off, so his para was gracious and talked to the parent about maybe standing somewhere else. We did leave 5 minutes early because at that point his anxiety was in full force.

After orientation we went down to his locker to load up the last of the school supplies and he was SO excited to see his friends he hadn’t seen all summer. And that’s when the J we know at home totally disappears.

“Can you eat Chevys!? Can you eat Chevys!?” He starts running around asking every kid he sees.

“Can you eat Chevys!?” Is the key phrase J uses to interact with friends. For some reason he thinks it’s funny. 1) Because it’s a ridiculous question, and 2) No one knows what to say to that and so guaranteed you’ll get a great facial reaction.

The kids know J. J does this all the time with them. And, bless their hearts, he goes to school with some of the kindest, most patient kids out there. But it also breaks my heart a little. Because the kid I had an awesome conversation with 30 minutes earlier–one that I had an on-topic, appropriate conversation his friends never see. They don’t get to see the kid we see at home. The one that’s quirky and full blown autistic and says out-there things but is also capable of really great, on-topic, meaningful conversations too.

That’s my $64,000 question. That’s a big piece of the puzzle I’m constantly trying to figure out. How do we get J to be the same J at school as he is at home? The J who can argue, manipulate, talk, and have fun with–in good, socially appropriate ways with his sister. How do we get him to do that with the kids at school? How do we get the kid who gets frustrated but ends up pulling through with a task at home to work that hard at school? How do we get him to obey school rules like he does with home rules? I know we’ll be revisiting J’s IEP in the next few months, but for me, that’s a huge mom goal.

Because he can have all the quirks, talents, and abilities in the world at home, but if he can’t translate those skills to the outside world, then it doesn’t matter in the end. I’ve thought about this a lot. I’ve seen it year after year in the first year college English classes I’ve taught. You’ll get smart kids–kids that got As in high school who end up failing or dropping out of class half way through semester because they can’t do this either. They haven’t been able to translate those skills in a new environment, without the net of parents and teachers keeping them in line. It’s just as much a problem for typical developing kids as well as kids with special needs.

First Day!

So far we’re surviving. The first two days were great. Today not so much. I think he’s testing the waters. We’ll figure it out as we go along. J will test and learn and comply and we’ll have to be on our toes in every response. But overall I’m optimistic for a better year. The teachers know him better. I’ve seen a change in his maturity this summer. And the best thing about this kid–when all is said and done, he really, truly, honestly, doesn’t want to let Steve or me down. He really cares what we think and he doesn’t want to disappoint us. He’s always been like that. Despite the autism. And that’s something we can work with.