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.”

 

 

 

Negotiating Space

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.

Steve and I both graduated in 2002 with our BAs. I was 7 months pregnant at the time.

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.

Once W was born, I stopped subbing altogether. My time and my space had to be put on hiatus for a few years.

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.

Pregnant with W and subbing at the same time. We didn’t have a ton of money at the time and I had about 2 or 3 “nicer” maternity shirts that I rotated through when I subbed. This shirt was one of them.

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.

MFA graduation, 2012. My sister and Steve were some of my biggest supports through the whole process.

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.

 

 

Never a Controlled Experiment

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

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

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

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

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

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

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

After all, parenting has never been a controlled experiment.

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

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

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

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

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

Grandma Sandy and the family at the Plains Art Museum

J with one of Star Wallowing Bull’s paintings

1st edition Picasso pottery

Picasso pottery

Star Wallowing Bull

Evolution of the Choir Concert

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

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

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

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

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

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

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

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

 

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

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

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

–The Becks

 

 

Outwit, Outlast, Outplay: Lessons Learned from this Month

New Jersey’s version of “The Old Man and the Sea”

Apparently toughness runs in my blood. My paternal grandmother and her family lived through some tough times in Belarus. Her family had survived World War I (most of them, my great grandmother buried two children on the side of the road as they fled from the Germans) and somehow made it through the Polish Soviet war afterward before emigrating to Canada in 1926. My maternal grandfather grew up on the Saskatchewan prairie—in the middle of nowhere—in a log homestead where in those winter months of -30C the ice would come through the joints in the wall and he’d have to sleep in every article of clothing he owned to keep from freezing during the Great Depression. His family relied on his ingenuity (as well as the ingenuity of his siblings) to make extra money and to keep everyone fed, clothed, and the household running. He later lied about his age so he could enlist in the Canadian Army during WWII to defend the country. There’s a lot of survivor grit in my family. And every day I’m counting on the possibility that I somehow inherited some of that.

Because being J’s mom requires survivor grit, and unfortunately, there’s never a day off. There is no forgiveness from deviating from the plan. If I let down my guard for a millisecond, J sees that and uses it to his advantage. Yes, sometimes our relationship is an all-out combat type of relationship. If we don’t practice reading comprehension for two weeks there’s hell to pay when we start it back up again. If we let up on piano practice for a few weeks it’s me v him, battle of the wills on the piano bench seeing who can sit long enough without relenting. If I stick with it long enough (at least 45 min) J will relent.

Outwit, Outlast, Outplay.

Most days I have no problems putting on a game face. Most of the time I can handle the stresses of having an autistic child—it’s not always a picnic, but I can do it. I get up every morning, put one foot forward, go through our routine and go to bed at the end of the day and wake up and do it again.

Sure, I’ll have those demoralizing moments of, “Well shoot. That just blew up in our face. What do we do next?” and sometimes there’s a few tears, but at the end of the day I really do like the challenge. I like to figure things out, research, research, research, (I love to read), and build new strategies. I love the fact that this experience lets me understand the human condition. I’m a writer. I thrive on that. But two or three times a year, I’ll have a meltdown–that full on cry-out where you’re body just shakes and your eyes are so puffy it’s hard to put in contacts the next morning. And there’s snot. Lots of snot: all over your face and the sleeves of your shirt. You just feel like you’ve sort of hit a wall.

A few weeks ago, I hit my threshold. I had one of those meltdowns.

It wasn’t J’s fault, really. This time it came down to burn out. Running on all cylinders, pushing an elephant up a mountain, running a marathon to find out that mile marker 19 was mismarked and you were only on mile 16. Pick your burnout metaphor.

These are the things I came out with after this triannual meltdown:

1) Know your sabre tooth tiger response. Mine is flight. Luckily I have a spouse who knows me well enough to know that’s my response and to be okay with it. It was Steve’s idea to fly me out to New Jersey to see a friend for 5 days so I could mentally regroup. I’m so glad I have such supportive friends on the other side. Hayley was more than happy to let me crash at her place for a while. I was really grateful, because sometimes I have to run away in order to come back feeling better. (My favorite thing Steve says to me right before I have to take a trip somewhere is, “Have fun! Remember to come back, right?”)

Hayley showing me the Jersey Shore

Hayley’s a good friend from grad school and it was so nice to not “do” anything and to talk writing and craft and MFA memories and publishing and to remember who I was again and what my plans for myself were and to NOT HAVE TO TALK ABOUT KIDS OR BE AROUND KIDS and just hang out with her! I needed to remember what I look like without J. Hayley took me to Princeton, probably the highlight of my trip, and I fantasized what it would be like to be a student again—a student there, just to sit in on lectures and listen and learn and LEARN. About everything. About writing. To sit in on a class taught by Joyce Carol Oates. Hayley and I joked about what our lives would be like to be a student there. Speculated what the party life would be like. I ate up the ivy league atmosphere, the trendy campus steeped in academic traditions. Because at the end of the day, I really do like challenges. I love learning new things. I think it’s in my DNA. I like to figure things out, research, research, research, (I love to read), and build new strategies. I love the fact that reading and studying lets me understand the human condition. I’m a writer. I thrive on that.

Oh Princeton, such a very pretty college town. I wonder if they have any teaching positions for Steve…

2) My two loves in life can sometimes be my mental/emotional downfall: being a mother and being a writer. There’s a lot of criticism and a lot of failure in both. It can take YEARS of your best efforts to be finished, sent of, and then rejected and rejected again. (Ugh! my Butterfly Endings manuscript is killing me. I’ve had to have sent that out to at least 30 journals by now, but all I’ve been getting lately is, “close, no cigar” type rejections). And you can never stop being either, which contributes to burnout. Obviously, with kids, you’re always on call, but as a writer, your mind is always turning too. I found this article online the other day that helped me figure out how to tame the creative burnout too:

http://performing.artshub.com.au/news-article/career-advice/performing-arts/madeleine-dore/why-we-are-burning-out-in-the-arts-249582

3) Eliminate stupid stress: This comes in many forms. Sometimes it’s just saying “no” to something or someone. Maybe it’s giving yourself permission to give into a few guilty pleasures (like downtime where you do NOTHING–no reading up on autism, no reading, no nothing. Total veg on the couch). Maybe it’s putting down that manuscript you’ve been beating your head against the wall about (I have 2 short stories that have been driving me crazy). Maybe it means not watching baseball the only time of the year you actually care about baseball (because your Blue Jays are pitted against your husband’s Royals). I kept my emotional distance on this one this year. I checked the Jays’ score on my phone up until they were out. Once the Royals made the World Series I let Steve sweat it out by himself. Usually I’m a supportive wife but this year I just needed to leave the family room. I don’t need unnecessary stress when I’m already stressed out. Sure, it’s thrilling and fun. The Royals put on an incredible show (Steve did show me the highlights) but I can’t go weeks on end, in real time, stressing out on something that doesn’t matter at the end of the day (sorry Steve. I know. Sacrilege.). Got to keep the emotional reserves up. Got to pick my stress-out battles.

I’m always teaching J how to manage his thoughts, how to “train his brain” to not respond, act, react, or become anxious about something. At 35 I’m learning that sometimes I need to play games with my brain to keep it grounded and far from wandering off into crazy town and hanging out there too long.

Outwit, Outlast, Outplay.

Here’s to survival and sanity for everyone!