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.

The Truth About Santa

We worked so hard for this picture. It’s funny the things we do as parents.

Back in April, Steve, W, J, and I had a pow-wow in our living room. Steve wasn’t on board with the idea (he’s the one who loves our kids being little and doesn’t want them to grow up). I’m always the one who wants them to grow up (maybe it’s because of J and his delays; I have that extra push for my kids to be on their own and to ‘get things’). I had decided we were going to tell them the truth about the Easter bunny. After all, J was almost done his first year of middle school and W (even though she’s almost a full year younger than other kids in her grade) was headed there in August. I assumed most kids by middle school knew the truth about the Easter bunny, and I didn’t want either of them to feel embarrassed or risk the chance that our kids would be made fun of for still believing.

My track record for trying to explain the mysteries of life hasn’t been great so far. One time, while picking W up afterschool, W asked me what sex was. Totally taken off-guard, and keeping my eyes on the road, I proceeded to explain sex to her. I explained how the anatomical parts (with their proper names) interacted with each other in very basic terms. I checked the rear view mirror a few times to gauge how it was going and it didn’t look like it was going well. She looked horrified. I quickly threw in the intimacy part in there, and how it really is enjoyable (even if it didn’t sound like it) and that it’s a way two people show that they love each other, but I could tell by her face that she didn’t believe me.

I’ve had follow-up conversations with W about sex (mostly to clarify or soften the information bomb I dropped on her). I always think I’m ready to do these things, but then I start talking and then realize I’m not.

That Easter morning, I dropped the Easter bunny bomb. Without any preface, or any softening (because like I said, I’m finding I’m no good at this) I said, “W, J, there’s no such thing as the Easter bunny, right?”

I couldn’t read J’s face at all. W’s face went through all sorts of emotions. First to confusion, more confusion, and then came the soft sobs. And then came the follow up question—the question I wasn’t prepared for. I was already questioning my success in speaking the Easter bunny truth, but you could see the wheels turning and W all of the sudden looked at me.

“So does this mean Santa’s not real too?”

Steve gave me the look of “see, I told you this was a bad idea.” Since I didn’t know or want to answer this one (I could tell I was crushing her heart—if you know W she’s the sweetest, gentlest, most innocent, I-love-my-childhood kid), I decided to stall by asking J.

“J, do you think Santa’s real?”

Without a beat, he said with 100% surety, “No. Santa’s not real.”

Definitely not what I had expected.

J’s not good about talking about himself or expressing his inner thoughts. Understanding his own emotions and thought processes is hard. His answer floored me. I just assumed he still believed because that’s what we told him and he believes and does whatever we ask of him (because all of his life he’s relied on other people to interpret or explain the world to him. He just doesn’t pick up on those things because of his autism). I had made assumptions about his thoughts and feelings without ever asking him—without even trying to get him to understand his own thoughts and feelings. Unfortunately, I hate to admit, I do that a lot.

Now that Christmas is here, I think about how often J has to just comply with things. Believe things we tell him. Buy the rationale we give him. I’m sure he has questions, doubts, concerns, but since he can’t articulate them, he ends up just goes along with it. I think back to the times when he was a toddler, trying to plant him on Santa’s lap for a good picture. One that we could stick in our photo album because at that time, I was already grieving the fact that my child wasn’t like other people’s children and I just wanted to that moment—that picture everyone else had. J wasn’t even interested in toys, at least not in the way other kids were interested in toys (a typical marker of autism). J refused to even wait in line. He had no real interest in Santa at all. Because I wanted to have that normal rite of passage—even a screaming child on Santa’s lap– we worked on it.

I strategized with his preschool teacher how to go about it. We talked about social stories. Finally we were able to get J to wait in a line (even though he was always on the verge of a meltdown) and to sit on his lap and at least say “hello.” It’s silly really—I’m sure he saw right through it the whole time. The stranger in a fake beard. The coming down the chimney business. But he did it, because we told him it was important. Even if he didn’t understand why.

It makes me wonder what else J rolls with just because he knows he’s supposed to but doesn’t buy into at the same time. This whole Santa thing has given me a totally different perspective. I am his mother, and it’s my job to explain the world to him, but I need to remember too how to let him see it in the way he needs to as well so he can carve his own place into it.

We do this all the time. How many other people (autistic or not) have to comply with a world constructed by a majority? Even things that don’t make sense sometimes. I know J sees the double standard when strangers expect him to look them in the eye and engage in small talk—but when we go through the checkout line in the grocery store, he sees that same stranger talking on their cell phone, totally ignoring the cashier—no eye contact at all. Sometimes I think we are all stuck in our little autistic worlds, thinking everyone sees the world the same way we do. The only difference is, we don’t have a bunch of adults reconditioning us to live the norm.

This Christmas season has been different. The kids know about Santa (W did end up forgiving us for lying to her) and their Christmas hasn’t been ruined. In fact, they’re having just as much fun as they always have. I’m not going to lie. Not have to be sneaking around about Santa has been pretty awesome. It’s a hundred times less stressful. The other day J and I saw a Christmas ornament for Fred, and I said we could buy it and put it in his stocking. J was pretty excited for that.

This week the kids have their choir concerts. W has her piano concert. The busyness of the season is here, but even with the countdowns and the disruptive schedules, things that always stress him out, J has told me several times he’s excited for Christmas. He’s starting to figure out Christmas in the way he needs to. And it’s pretty awesome.

Staying Inside the Lines

I feel like when you’re doing the autism gig, you’re constantly keeping your kid within the lines, corralling them into the spaces society creates. There’s personal boundaries, ethical boundaries, social boundaries. As a society I think that’s how we make sense of the world.

Autistic kids are always seeking these lines and laws and boundaries too. Except they have their own lines and boundaries and many times they don’t match up with everyone else’s.

Of course, “staying inside the figurative lines” has always been sort of an enigma to J. Figurative lines are more nuanced. You can’t see someone’s personal bubble–and everybody’s is different. You can tell a joke but sometimes it backfires and hurts someone’s feelings. These are the things you can’t see. They’re harder to judge.

Watching J trick-or-treat this year was a great reminder to me of the progress he’s made especially in the last two years trying to navigate these invisible lines. J hasn’t been the best trick-or-treater. Up until these last two years his experiences have been hard at times. I think trick-or-treating is a little bit of an enigma for kids with autism. It’s the one time a year where you ring door bells and beg strangers for candy. There’s always that awkward moment at the screen door where you’re not sure if you’re invited in, because the person at the door leaves you between the screen door and the front door (but leaves the front door open) and tells you to wait one second but you’re not allowed to come in. Sometimes the person will drop candy in your bag, and other times they’ll hold the bowl–do you wait for them to take something out of the bowl and give it to you? Do you take one on your own? Do you take more than one? Then you’re supposed to recite some phrase that makes no sense at all: “Trick-or-treat!” what does that even mean? Is the person at the door tricking you? Are you supposed to do a trick? Nobody does either of these things. All of the lines of traditional social decorum you’re supposed to stay inside are gone and there’s this weird dance between you and a stranger going on at the door.

To make things worse for J, there was the whole dog factor. J was terrified of dogs up until two years ago (when we ended up adopting a dog of our own and J could figure out dogs a little better–that’s another story for another day) and so every doorbell was like Russian roulette and if the lot fell on a dog door, J would go flying down the driveway before the dog owner could drop a few pieces of candy in his bag.

I guarantee most people don’t think about any of these things when it comes to Halloween. I can tell you I never did until J and autism came around.

This year everything went perfectly. I was so proud of our J, seeing him go up to each door by himself, with confidence, and go through all the quirky motions of “trick-or-treat decorum,” wait patiently for candy, taking an appropriate amount when offered a bowl, saying hello to the dogs. Saying thank you EVERY TIME. Wishing people a “Happy Halloween” as if he were wishing people a “Merry Christmas.” It was wonderful. And bittersweet, because just as he’s finally figured out this strange ritual we’ve constructed for kids he’s on the edge of being too old to participate. I find that’s often the strange thing about parenting an autistic child, once you’ve finally mastered something you want to pause, enjoy it, shout from the rooftops “hey look! we’ve figured it out,” but you can’t, because society’s constantly moving on and you have to keep running along too.

J went as Commander Riker (sans the beard) and W went as Rosie the Riviter this year.

Even though it’s tough, J knows “staying inside the lines” is so important to keeping himself happy. He has a really hard time functioning if he can’t figure out where the lines are. Even when it comes to school work. I think J feels constantly out of control, like things are shifting all around him–lots of times visually and mentally. Drawing lines, boxing things up, compartmentalizing, containing things. There’s a control in that, and it helps J make sense of things.

I’ve mentioned J’s visual spatial processing issues before. Containing things, keeping letters and symbols in their right place is very hard and yet very important, especially when it comes to taking notes and doing math problems. J’s been struggling with math lately. I have to say, this is hard. Because I was/still am an absolute mess when it comes to math. That’s why I became an English major. I was so terrible at math that at one point my parents made me do a stint in Kumon for a year. That year I did worksheets on fractions. Every day. Drill after drill. I have to say it’s probably the one thing in math I can do in my sleep. Right now J is reviewing fractions again–and here’s a sample of the basic method I came up with for dealing with fractions. It’s basically boxing up fractions to keep the numbers straight. Of course he’s doing more complicated fractions than this (mixed numbers, subtracting/borrowing from mixed numbers–maybe I’ll put the rest of my fractions strategies in another post), but here’s where it begins. He still struggles with some of the harder stuff–the more steps added on, the more there is to juggle. But he seems to get this method.

Here’s the weird irony of it all. As an autism parent, you’re constantly keeping your kid within the lines, corralling them into the spaces society creates, providing highly structured learning experiences for your child. But at the same time, you as a parent have to think outside all of these things. You’re forced to think outside of the box to solve problems other people can’t solve ALL THE TIME. To look at our world–our society–in ways that nobody else normally thinks of them. It gives you perspective and ingenuity you never thought you had. And I have to say that’s really satisfying too–just as much as seeing your child master the art of staying in the lines.

Bildungsroman

“Blidungsroman.” “Coming-of-Age.” “Novel of Formation.” “Growing Up”

J the nugget. A perfectly beautiful, healthy, 8 lb 5 oz little boy. Who just happened to ace the APGAR.

J is 13 years old today and officially a teenager. It’s always been uncharted territory with him. He’s always been my mystery child. We’re always trying to figure out what we can do to make him comfortable and safe or what we should do to make sure he can have the best learning experiences possible. Why does he do the things he does? Why doesn’t he experience and feel the world the same way we do?

But now, at 13, we’re starting a different type of uncharted territory.

Our society eats up coming-of-age stories. YA stories are just dripping of wonderful, painful, angsty material. Go into any Barnes and Noble and you’ll see a good third of the store filled with these novels. They’re big money makers. They’re good blockbuster movie makers. Because even adults come back flocking for “coming-of-age” stories. I’m not sure why we still find them appealing. Because our own angst wasn’t angsty enough? Because there’s an underdog to cheer for? Because finding oneself is the ultimate payoff? Because we still haven’t found ourselves yet?

I know this story is going to be a doozy. Teenage life is hard. My teenage life was hard. All of those things like fitting in, boys, trying to find independence from my family, trying to find out what I’m good at so I know what I want to be when I grow up. Hard stuff.

For J it’s going to be even more than that. Going through those things with a body that is oversensitive to everything all the time but it’s now changing and growing and hormonal. Hormones are hard enough when you don’t have autism. Or how about having no clue about the basics of social interaction, let alone the secret languages and nuances of teenage communication? It’s going to be wonderful, painful, and angsty. It’s going to make for a great coming-of-age story.

Even though I’m in my mid-thirties I feel like I’ve been on my own Bildungsroman with J these past 13 years. Not with him, but alongside him, because:

J at one year.

“A Bildungsroman relates the growing up or ‘coming of age’ of a sensitive person who goes in search of answers to life’s questions with the expectation that these will result from gaining experience of the world. . . . Usually in the beginning of the story there is an emotional loss which makes the protagonist leave on his journey. In a Bildungsroman, the goal is maturity, and the protagonist achieves it gradually and with difficulty. The genre often features a main conflict between the main character and society. Typically, the values of society are gradually accepted by the protagonist and he/she is ultimately accepted into society — the protagonist’s mistakes and disappointments are over. In some works, the protagonist is able to reach out and help others after having achieved maturity.” (Wikipedia)

I hope the next 5 + years J and I will be able to successfully navigate our “coming-of-age” stories, side by side. It’s crazy to think that I still am finding out who I am. If these high stakes will make or break me. In some ways J and I are still in this symbiotic relationship. Giving and taking and making mistakes and experiencing disappointments all in the hopes that we can each find our place in society. That we can both feel successful in our own ways–the ways we need to.

And maybe, after we survive these next couple of years and growing pains, part of that J mystery will be solved, and we’ll really get to find out who this J really is. It might take longer than that too. I feel like every year we get closer. Sometimes I get frustrated that it’s not happening fast enough, but I know when we do, when he can sit in his own skin long enough and understand how it works, and who he is, he’ll be able to show us, and it’s going to be amazing.

Happy Birthday, J. Let the Bildungsroman begin!

W, Teen Vogue, and New Territory

This week a fuschia envelope arrived in the mailbox, addressed exclusively to “W,” inviting her to sign up for a year’s worth of Teen Vogue and I thought W? Our W?

Teen Vogue you’ve got this girl all wrong. This girl is into dirt and butterflies and sap samples. She loves books and her microscope kit. I have to remind this girl to brush her hair every morning before she leaves our house or else she won’t do it. Her mind is nowhere near fashion, beauty, and celebrities. This girl doesn’t even have her own cell phone. She’s turning 11 this week.

But Teen Vogue’s calling card made me realize that things are changing. W starts middle school this week. MIDDLE SCHOOL. And this little girl I know now will have a whole new academic, emotional, social, and physical (shudder) dynamic to deal with.

And of course there’s the autism dynamic.

I’m nervous. This is new territory. J and autism–it’s all W’s ever known. Six weeks after she was born she was right there with J in early intervention preschool, speech, occupational therapy. First in her car seat, then propped up as a six month old sitting next to him on his carpet square, toddling down the halls of his early intervention school, later as a peer model in that same classroom.

Autism has affected every single one of us in this family. But I think it’s affected W the most. Steve and I have lived the majority of our lives without ever knowing a thing about autism. W has lived with it every single day of her life.

I ask her about it a lot. I ask her if she feels like she gets enough attention from us, because I know she doesn’t. She assures me that she’s fine–that hanging out with just me would be nice sometimes, but “I know that J needs more help than me.” I ask her if she gets embarrassed about J. “Sometimes,” she says. But she’s always the first one to come to his defense. Like if some stranger at the grocery store criticizes something J does. “People just need to get over the things he does,” she tells me. “People just need to know what autism is.”

I admire her. A lot. The way she bounces back so quickly if J ruins her crafts, licks the brownie batter bowl before she’s gotten a chance. She doesn’t stay mad very long if we have to leave a movie theatre, or some other fun activity early if J has a meltdown. Most of the time she has more patience with J than I do.

And now, I think their paths are going to diverge. She’s going to experience middle school fully in all its gore and glory in ways that J doesn’t always understand. W understands everything. She notices every little look, glance, sigh, social cue around. These next few years are going to be exciting and terrifying at the same time. We’re all going to be figuring this out together.

So Teen Vogue, give us a few years. This girl has a ton of stuff on her plate. Don’t make her grow up too fast. In fact, there are times where I wished she didn’t have to be so grown up. Let her still have fun with butterflies and nets and rock collections.

There’s plenty of time later in life for beauty and fashion.

Rites of Passage, Milestones, and Lawnmowers

J and W just hanging out.

I have a love hate relationship with rites of passage and milestones. Most of the time I hate them. They remind me of how “behind” J is, or how he’s just not like every other kid his age. I remember going to playgroups watching some babies walk and talk at ten months, their mothers proudly boasting their prodigy child’s accomplishments and then going home thinking, “My baby’s smart too. I know it. He’s just not doing those things right now.”

Milestones, physical abilities, rites of passage. They’re all really big things. Some parents hold their children back in school so their kids can have an almost full year advantage over the other kids in their grade. You now have kindergartners who are starting off kindergarten at six years old, who will turn seven just before school ends. Many times it’s because parents are making sure their kids have that extra developmental advantage to try out for school sports. So they can run faster and jump higher than the other kids in their grade.

While kids like J are still just getting the hang of running and jumping.

There’s prom and preschool graduation, learner’s permits and driver’s licenses. All dictated by the forces that be that they will happen at predetermined times and places. It’s part of our culture. They make blockbuster movies out of these sorts of things.

When J was a toddler, I asked J’s early intervention preschool teacher for developmental milestone charts–the kind the therapists used to assess toddlers when they’re looking for problems. She gave me three–one was for emotional development, the second for physical development, and the third for social development. J was behind in every single area, gaps of missing progress all over the charts. I would spread these charts out on our dining room table every few weeks, long bar graphs of data stretched out under month and year ranges. I would take a highlighter and highlight any milestone (always months after the suggested range) when it happened. I never celebrated them like other parents did. How fun is it to say to another parent, “My kid finally put two word sentences together!” when that parent’s kid has long past graduated two word sentences and now rattling off imaginative stories with another peer? I never “celebrated” J’s milestones with anyone. I’d keep them to myself and pull out the highlighter, thinking, “now if we just can get him to do x, y, and z, then maybe we’d be a little closer to catching up.”

Milestones now don’t happen as quickly and diversely as they do at the toddler stage (saying 5 words, saying 10 words, drinking from a straw, jumping on one foot…). Many of the milestones you reach at this age are social/emotional. And I know he’ll be behind on those as well–because, autism.

But this weekend we had a milestone happen and I’m pretty excited about it. And I’m excited to let people know about it. Maybe it’s because “mowing a lawn” won’t show up on any developmental checklist. There’s no “right age” to mowing a lawn. In fact, this weekend, I learned how to mow the lawn for the first time.

Steve gave me and J the tutorial, showed us the parts of the mower. He explained the automatic mode and how the mower shuts off as soon as you let go of the handle. We’d tried this with J last year, but it didn’t work. The mower was too loud. It was too heavy to push. Ultimately J was terrified of it. Even with J’s sound-cancelling headphones we couldn’t get him to touch the mower for more than a few seconds. He didn’t have the strength even to push the lawn mower forward or sustain the attention needed to be safe. But this year was a different story. His body and brain decided they were both ready. And with supervision he did it! And I had one of those giddy proud mom moments–where he’s actually doing something another kid his age would be doing. It’s even more amazing for me to think–all those things I know about J that most people don’t when they watch him–how big of a deal this really is. How his brain is always in sensory overload and how he’s regulating that better. How he’s maturing now to focus better and respect the machine. And to see the confidence in his face when he’s doing it. And best of all NO HEADPHONES!

So here is my proud rite of passage moment. I present to you J and the lawnmower:

(It’s not perfect–not perfect at all. You’ll notice the pizza slice strips of longer grass he’s missed).

Mastering the pivot.

Sometimes you just have to wait for all of the pieces to fall into place. And if they don’t, you just have to come back later and try it again.