Meanwhile, Sky....

The siege of 2016 continues as we wait for Tuesday to come and for Ren to have his follow-up appointment with the spine surgeon. Of course, it only feels like everything has ground to a halt. For the past two weeks, life as been full-steam ahead with work and school even if we are all still spending more time than usual cooped up together. 

All this togetherness continues to teach me stuff. A few days ago, I posted this to the Facebook page:

Something amazing happened last night. Sky barged into our room and interrupted a conversation Ren and I were having (happens all. the. time.)

Me: Wait. 

Sky: Mom, Mom, Mom, Mom. 

Me: (holds hand up to remind him he has to wait) 

Sky: (fidgeting, dying to talk, but still waiting) 

Me: (stopping my conversation because he's too distracting even if he is technically waiting) What do you want, Honey? 

Sky: Ok. First, you know when frogs are babies...? 

Me (interrupting him, exasperated): Sky, do you really need to interrupt the conversation I'm trying to have with Daddy to talk about frogs right now? (What the heck?!?! He was playing cars with Stow when I left him five minutes ago. How in the world did he get on frogs so quickly?) 

Sky (pauses, then says half to himself under his breath): Okay, that one I can save for later. (Then, looks at me, and says): Second, can we watch the fourth Harry Potter movie tonight? 

Me: (dumbfounded)

I mean, sure, he didn't need to interrupt our conversation to ask about watching a movie, either, but HE WAS ABLE TO REFRAIN FROM TELLING ME SOMETHING DESPITE THE FACT HE HAD ALREADY STARTED TO TELL ME AND HE CLEARLY WANTED TO TELL ME.

He's 11. That's the first time this has ever happened.

At the risk of going on too long in a Facebook post, I didn't describe the singing of the heavenly hosts that echoed through my head in that moment when Sky actually restrained himself. I also didn't go into excruciating detail about all the times he starts any conversation as soon as he steps into the room never taking a moment to assess whether people there are busy or talking or sleeping. He is getting better at things we've been working on, and we do have a long way to go. But, I wrote that post because I realized that with the chaos of parenting three kids while also nursing a spouse through his fifth spine surgery, I sometimes forget to celebrate these moments that highlight how Sky is slowly but surely coming into his own.

Sky (b. 2004 -   )
"Untitled," 2015
Mixed media
Courtesy of the artist (found under the seat of the car. And, for what it's worth, the egg fell from the carton....)

A few days before this post, as I wrote an e-mail to a mom with a recently diagnosed three year-old, I realized that it's getting harder and harder to remember just how much we didn't know five years ago when Sky was first diagnosed. Don't get me wrong. It can still be a challenge to manage some of the sensory and social skill challenges that are a part of our everyday lives. But, as I was explaining to this mom about OT, PT, speech, ABA, IEPs, and the benefits some folks experience with dietary changes, I suddenly felt very grateful for just how far we've come and for all the many people who've walked with us on this journey.

I ended my e-mail with this reminder. It's something I've told myself a lot over the past five years, but I'm not sure I really believed my own advice until recently: 

I know this is all probably overwhelming, but my biggest advice is this: Don't panic. Take it one step at a time. Gradually implement therapies and/or dietary changes as you are able to handle them. Never feel bad about not doing enough soon enough. You'll keep learning and figuring things out as you go. Do what you can when you can. You are your child's biggest and most important advocate. That can feel like a lot of pressure, but as long as you are taking care of yourself and doing what you can as you can, you will get there.

Rain Rubble Earthlings

A friend ask Sky to draw a picture of St. Basil's Cathedral in Moscow with a monster on it. I suppose you could say it was his first commissioned piece. He'd never seen a picture of St. Basil's, so I showed him one on the Internet. Within an hour, he'd drawn this:

Ren and I thought something this violent might jeopardize any future political ambitions, so we suggested he tone it down a bit. Thirty minutes later, he'd created this somewhat tamer scene: 

\

Not to be outdone by her brother, Pink created her own version of a monster attacking St. Basil's only her monster was a cute "bat monster," and he was met by a giant bird, a unicorn, and a pegasus:

*****

My kids are always drawing, and a lot of times their ingenuity their ability to communicate so clearly with their art kind of blows my mind. Today when I went to tuck Pink into bed, I found this:

Pink P's guide to calming down when you're sad. Have you ever seen sadder people? She proffers all sorts of advice in her book. In this illustrated guide, she suggests hugging Mom, kissing Mom, playing with a beloved toy, watching a favorite TV show, and even screaming into your pillow.

If none of those work, you can always chew on something:

Though I suggest chewing on something slightly less larger than your head.

Or, take a nap:

With your pink pillow of course.

Mostly, though, she thinks you should just calm yourself down already. I mean, sheesh, you shouldn't need a picture for that.

Here's the thing...Just when I think the hard parts of parenting are about to get the best of me, I stumble across something they've done that's unexpected and insightful, and I am reminded that being a mom is so much more than slogging through the muck of things like early morning bento making and argument refereeing!

Thank goodness, too. Without their quirky creativity, I'm not sure I could keep my sense of humor especially when I seem to spend ALL of my free time writing strongly-worded e-mails to school. [Today alone, I wrote one message to Pink's principal suggesting they find better ways to celebrate Earth Day than by giving toys only to the kids who purchase "hot lunch" (but not to the ones like Pink who can't eat hot lunch due to allergies) and a series of e-mails to Sky's teacher troubleshooting ways to make sure he is adequately supported in his attempts to advocate for himself when he's being picked on.]

So, RAIN RUBBLE EARTHLINGS! There's nothing in this world a few well-placed monsters and a couple of unexpected drawings can't fix.

Midweek Diversion (Trust Me, You'll Like the First One)

I've started to suspect the children's bulletins at church are for my entertainment more than anything else. 

Minus the exploding airplane and the giant robot arm (deus ex machina, literally), this looks exactly like our church.

And, here are a few more shots from the Star Wars series...

Who knew one of these guys could look so wistful?

A Midweek Diversion Brought to You by Sky

Some recent random art by our resident illustrator...

On a Scale from 1 to 10...

One of the ways that being on the autism spectrum impacts Sky's life (and therefore the rest of our lives) is that it is much harder for him to figure out what to do with his emotions. Whether he's feeling good or bad, it's easy for him to slip into the extremes. So, one moment he can be gnashing his teeth questioning his very existence and the next jumping giddily around the house. Regulating  emotions can be difficult for any kid, but for Sky, it's an active daily struggle to keep it together and to behave "appropriately." I've written about his meltdowns in the past (here, here, and here among other posts), and he can still fall apart like no one's business. But, lately he's become much more interested in trying to figure out how to get a handle on this.

For about 9 months now, we have been working with a play-based behavioral therapist who turns out to be a perfect fit for Sky. Her willingness to work with all of us to understand how his challenges impact the whole family paired with Sky's increased motivation to make things better have yielded some amazing results.

In their last session, they came up with this.

Click on the picture to enlarge it. Trust me, you'll want to get the full effect.

This is a visual cue chart that Sky created to help him be more in tune with his feelings. In making it, he had to think about how to articulate and graph his various emotional states. Now that he has this poster, he's trying to use it to keep himself aware of where he is on the scale and to think about different strategies for avoiding going above level 6 (and what to do if he does). The first night, of course, that meant that every two minutes he told me what number he was "just so [I] would know." Admittedly his verbal play-by-play got a little annoying, but, as time passes the goal is for him to shift from extrinsic control mechanisms (i.e. other people helping him manage his emotions) to intrinsic ones (i.e. he recognizes when he's getting into the hot zone and makes the necessary adjustments on his own). The first step is this chart, which will hopefully become a go-to tool to help him cope with the wide-range of emotions we experience in everyday life. 

In case you can't read it, here's how the chart breaks down (and my commentary because I just couldn't resist):

1-3 Great, controlled, fine. These faces make me laugh because I'm pretty sure they are direct copies of the pain chart he saw on the wall at the pediatrician's office the last time we were in. 

4-5 Mad, controlled, angry. By number 5, Sky is moving away from his pain chart inspiration and into unchartered ground. 

6 Freaked out, controlled, keeping feelings inside. You guys, I love number 6. This is where Sky finds himself a lot. The good news is that he really does try hard to keep his growing frustration inside. The bad news is that it's still really hard for him to do that, so sometimes this stage lasts for about a millisecond before he slips into 7-10. 

7-10 Totally lost it, hitting, yelling, etc. These pictures speak for themselves, but I do want to note that 90% of the time Sky hits levels 7 through 10 either his sister is bugging him or he thinks his dad or I don't understand what he's trying to say. On the bright side, this means we know exactly where we still need to do some work!

Sky was thrilled when I asked him if I could show this to you guys. "I love it when I can tell people what it's like to be me!" he said, grinning. He really does love to help.

Me? I love it that he tries so hard and that he keeps fighting the good fight--kinda like a superhero. This has been our theme song lately. Between the back and the allergies and the autism, maybe these kids ARE superheroes. Either way, I think I'll keep them!

Perfect 10

Sky turned 10. I'm still trying to wrap my head around this, actually. When he was an infant, I looked at moms of 10 year-olds and they seemed like parenting pros. Ironically (or, perhaps, totally predictably), I don't feel any more competent or skilled as a parent than I did the day he was born (though I am a heck of a lot better at dealing with bodily fluids).

On that day, when it was just the two us for the first time, I felt pretty overwhelmed. I had no idea how I would parent this kid. But I did know that we were definitely in this together, and that no matter what, I would always love him and I would always have his back. I told him that then. He sighed and snuggled, still getting used to the bright big world.

Last week, I told him this story of our first conversation. The cool thing about Sky is that if you slow down and pay attention, you can watch him hear you, process what you said, and then react slowly and deeply to it. I watched him do this after I told him this story. It took a couple of seconds for the light to shine in his eyes. He knows I love him, but he also longs to hear every detail of the wondrous story of us. "Thanks, Mom," he said with with a huge smile. I could tell he was simultaneously relieved and really touched. In his book, if I've had his back this far, I'm good for my word.

Random Sky Art

To tell you the truth, though, I feel unbelievably lucky to be this kid's mom. Sure, it's challenging and mind bending at times, but holy cow! He's so smart, funny, and creative. He's kind and a genuinely sincere kid. But, none of these adjectives comes close to describing what it's like to join him in his world and glimpse things through his eyes. It's a trip, and it's also the best ride of my life.

And, the thing that makes it all better is that we are slowly but surely figuring out how to make autism manageable for us, for him. There are still days when the stims, the anxieties, and the social/sensory stuff just totally quash our good vibe, but we are figuring it out. And, more importantly, Sky is figuring it out. He's learning to see all the awesome in himself and share it with others. He's learning how to track with the rest of us, and It. Is. So. Much. Fun.

Yesterday, we went into the Hallmark shop where we discovered the newest collection of Christmas ornaments. Much to the chagrin of the woman working behind the counter, we tried out most of them. I was particularly fond of the Brady Bunch ornament (in case you're wondering, it plays the whole entire theme song). Sky was interested in the newest Star Wars offerings. If I buy one, it will be the Cantina Band ornament. It will most definitely not be this one:

Go ahead, click on the link. Trust me. You'll be sorry if you don't.

When we listened to this in the store (after looking for the darn button for about 5 minutes--hint, it's on Vader's left), it seemed to be turned up to the-whole-store-can-hear-it volume level. At another time and in another place, Sky would've freaked out when I pushed the button to stop the ornament short, saying, "Wow. I can't imagine an ornament with more Christmas spirit."

Instead of freaking out, though, he laughed and walked out of the store grinning. No meltdowns. No resistance. Just good-natured ribbing.

On the way to the car, I said: "It's like saying, oops. I killed the woman I love. Merry Christmas!"

He joined me on my riff, "Or, someone ate all the Christmas cookies. Nooooooooooooooooo!"

"Yeah," I agreed. "Nothing says Happy Holidays like death and destruction!"

We're in a sweet spot.  Sky's coming into his own. He's figuring it out. He's understanding jokes. He's learning to read people's non-verbal cues. He getting better at keeping his sensory-driven impulses under control. Sure, he still has to work hard, and it's not always easy. But to me he's  perfect--a perfect, perfect 10.

All the Joy, All the Sorrow

A month or so ago, Sky brought home a letter from his school art teacher saying his picture had been selected for the "young artists" exhibit at the city art museum. She told us to look for a picture of him in the local paper. That was back in February, or maybe early March, so I wasn't even sure which paper to look in or when.

For a couple of weeks, I tried buying all of the local papers but eventually gave up, assuming I'd missed it.

Then last week, Sky brought home an extra copy of the paper along with a glossy photo of himself holding this picture.

The actual picture is squarely framed. This is a picture of a picture of the picture, though. So, less square.

This, you guys. This is the picture that got selected. He's one of five kids out of 350 in his school to have a piece selected. So, it turns out it was kind of a big deal, which is why his art teacher reminded us of the exhibit opening (more than once). We wouldn't have missed it for the world.

Of course, it was a mad house with kids in grades K through 12 from all the district schools and their families in attendance. As soon as we got there, Sky spotted his art teacher. He wanted to introduce her to us, but he kept trying to get her attention by standing just behind her in a very crowded and loud room. Every time she walked off, he got discouraged and came to me for help. Unfortunately, since it was nap time, Stow decided this would be the perfect time to show off his "death drop" skills--you know when toddler goes from vertical to horizontal in a single motion-- so I found myself weaving through the crowd, dragging a 36-pound toddler in the prone position while encouraging my socially awkward son to step in front of his teacher. After five minutes of dragging and weaving over the entire area of the exhibit, I may or may not have resorted to giving Sky a little shove to get him into her path.

When she saw him, her eyes lit up and she grabbed his hand and took him right to his picture. He got that sheepish proud grin he gets that I love so much. As we were weaving back through the crowd, me still dragging Stow, she said to me, "He's brilliant, you know. The way his brain works is fascinating. I'm amazed by how he sees things."

When we got to his painting, we took a picture of the two of them in front of it. She called over her husband and introduced him to Sky as "the one who did the incredible Native American storytelling project." He congratulated Sky on his work, and she turned back to me and said, "It's a pleasure to teach such an out-of-the-box thinker. He really is quite talented. Wait until you see the one he's working on now. The layers are amazing. You'll want to frame it." And then she was off into the crowd, pulled away by another student wanting to introduce her to his parents.

That, you guys. That is what it's like to meet a teacher who really sees Sky, a teacher who refuses to be put off by his sound effects or his inappropriate comments or his need to move at inopportune times, and empowers him to express all the brilliant ideas bottled up inside of him.

*****

Twenty minutes later, on the car ride home, I got an entirely unexpected e-mail from the woman who runs the after school art program Sky had been attending for the past six months. In it she outlined his allegedly escalating behavioral issues. She ended her message with this:

"[His teacher] doesn't feel she can adequately support his needs, the needs of the rest of the class and maintain a positive learning environment. After much consideration, we will not be accepting Sky's enrollment for this last session. A credit has been processed. I'm sorry for waiting this long, it was a difficult decision."

This. This is what it's like to live with autism. Because, when you are living with autism, you experience all the joy and all the sorrow, and sometimes you do it all at the same time.

See, it's not just about me and my kid. I get my kid. I love my kid. I love it when people get my kid, because when they do, he feels happy and proud and confident in a way that fills me with unimaginable joy. But a lot of people don't get my kid. They judge him and are mean to him and discriminate against him because what they see is not the awesomeness that hides just beyond the verbal stims and the poor social skills and the seeming inattentivenss. They only see those things that are very much a part of his autism. And they discount him for it.

I love every single thing that makes Sky who he is, but I don't love the way people treat him because of it, and I don't think I will ever stop being heartbroken every time something like this happens to him.

(To be continued...PART 2, PART 3, POSTSCRIPT)

My Christmas Wish: Time for a Love Bomb

As you guys know my 9 year-old son Sky is on the autism spectrum. While his autism is "mild," it impacts every point of contact he has with the world around him--his senses, his understanding of language, and his ability to read social cues. We received his diagnosis three years ago this week, and every year, I try to commemorate what I've come to see as this rebirth in some way. It wasn't as much a rebirth for Sky as it was for Ren and I, because for the first time ever, we could understand why he did the things he did, and we could become much better parents for him. We feel so incredibly blessed by this life we have and especially that this diagnosis has helped us help him.

I started blogging not long after his diagnosis because I was looking for a community of parents who had been through this. Autism can be lonely because there is so much misinformation and missing information, and there really is no handbook for how to get your kid all the things he/she needs. In other words, I started blogging for myself. But then a funny thing happened. Sky took interest in my blog. He wanted to hear the stories I was telling. Then he wanted to tell his own. If you have a chance to look through the archives, you will see him desperately trying to help others understand what it's like to have autism. (The posts under the label "Illustration by Sky" touch on this topic the most).

As many of you know, over the summer, we had to move. We moved away from the occupational and speech therapists who'd worked with Sky for more than two years. We moved away from the small school full of friends who've known him since the first days of his diagnosis and who came to accept him just as he is. And we moved when he was in third grade, just when kids seem to be more aware of the social nuances of life and a lot less forgiving of difference.

The move has been hard for me because I completely lost my network of support and have struggled to locate therapists who can help the way the ones we had before did. But, the move has been harder for Sky. He's not like everyone else. He makes a lot of noises, asks weird questions, misreads social cues, and consistently invades peoples' personal space. Not the best traits for helping the new kid fit in, and he's feeling his "difference" like never before. Every day, he says to me, "Mom, it seems like the kids don't understand what it's like to have autism" or "Mom, I miss my old friends because they 'got' me" or "Don't they know how hard I'm trying?" Last week he told me that he's always picked last for gym (everyone's worst nightmare) and that "it's hard to be friends" with the little girl who lives across the street and who happens to be in his class because "every time I try to talk to her, she walks away." My heart is breaking for him, but more than that, I worry because he is getting discouraged, and he no longer feels confident enough to advocate for himself. He's a smart, kind, and funny kid, but he's losing his voice.

So, my wish is this. I wish you, my readers (and your friends and neighbors, and heck, even complete strangers), would love bomb Sky by reading his old posts (click on the label below) and offering him encouraging feedback. By telling him what he helped you understand about autism, and by encouraging him to write more. Let's help him rediscover his voice and to keep telling his story.

Awards Day

Awards Day gets me every time. Part of it, of course, is that school is ending, leaving a vast unknown ahead of us. Before I had kids, I wasn't great with change. Then I had a kid with ASD, and change is even more anxiety-provoking. Besides the yawning abyss of summer vacation immediately before us, I also know that most of what we accomplished during the school year will need to be re-accomplished come August, and the thought of this makes my heart race.

So maybe I don't always go into Awards Day with the best attitude. I mean, I appreciate the idea of rewarding accomplishments and noting things that are notable. Thing is, my kid isn't going to get most improved. He will probably never be the best citizen in the class. And, his Christian attitude is easy to miss when it's camouflaged by his personal space issues and his tendency to say whatever's on his mind regardless of whether it's appropriate or not. He won't even have perfect attendance since he misses an hour every Wednesday for speech and OT (even though we get up extra early that day so he can get most of it finished before his classmates are even done with breakfast).

Sky's accomplishments are no less noteworthy than his classmates', though he will probably never be rewarded for them. He interrupted his teacher less this year. He had fewer meltdowns and panic attacks. He started to better grasp the concepts of personal space and turn-taking in conversations. He didn't hate school.

I know I'm supposed to take solace in the fact that he's making progress, but it's still hard to sit through Awards Day and not daydream about how things could be different. Part of the time, I find myself wishing Sky's struggles didn't distract from his learning experience, and part of the time I wonder if he has some hidden untapped genius like the Indiana kid who turned out to be an astrophysicist. I know I'm being ridiculous and that I just need to keep encouraging Sky's strengths and helping him overcome his weaknesses, but sometimes it's hard to stifle those thoughts especially when award-day activities slip from the first hour into the second one.

Fortunately, it seems like whenever I find myself obsessing about these things, Sky turns around and does something that reminds me we're doing okay as his parents.

Today, it was this:

In case you're wondering (if you aren't now, you will be by the end--trust me), he hijacked the Mary Engelbreit stamps I had in the garage sale pile. Of course, you will have to get to the end to find out why the robot got an "F" on his attempt to rule the world. And, I know some of you probably think I should stop posting these stories by my 8 year-old, but you see what he wrote in red. How can I say no to that?

I love two things about this picture:  the sense of perspective and motion, and the fact that the guy in the picture is making a Japanese sound effect when he flies through the air.

The good news is the robot seems to have an on-off switch. The bad news is that I have no idea how Sky knows the "I believe I can fly" reference. 

Some of this feels vaguely like Iron Giant, which would explain a lot. But not everything. I mean, where does he get this stuff? We don't let him watch much that's PG even, and besides one of the Star Wars films, he's not seen any of the stuff most boys his age have watched.

This is where the story initially ended, but I had more work to do, so I encouraged him to keep going. You can tell me whether you think it was a good idea. Also, in case you're wondering, the X's on the eyes are never a good thing.

More X eyes and smashed buildings. 

Notice the bird on this page and the one before it?

I kinda love this alien. It's as if he's a cross between Gumby and the Marshmallow Man from Ghost Busters.

But he's totally bad ass.

Even when running away.

Of course he was. 

Of course he did.

Of course they did.

I had to ask about this one. Apparently this little robot can only shoot from his feet. You'd think that might be a disadvantage.

But it turns out it's not.

I don't know about you, but I think the ME illustrations might add a layer of meaning that wasn't entirely intended.

Before I had a chance to post this story, Sky went to speech and OT and wrote this addition. I really heart it on a number of levels:

About the Author 

Sky grew up in [small town, state] with his family. He loves robots and is always curious about how they work. He loves to look at the detail in explosions. He likes to hear them too. He also loves to build and draw; that's why he made this book on June 3, 2013. He also has autism. He never lets autism get in the way of things, even though it's hard sometimes. Autism has made him really good at some things too, especially drawing. He made more books and comic books, like "The Wagon" and "The Wagon 2 Weirdo." He's very good at origami. His dad named Ren is Japanese. His mom Moe is American. He lived in Japan for a few years when he was young. He loves the trains in Japan, almost as much as he loves robots!

I'm Pretty Sure That's Not What They Meant

Sky loves the kids' bulletins from church. They keep him busy and help him process the sermon. But this past Sunday, I think maybe he missed the point.

I could be wrong, though. You be the judge:

Kind of makes you want to be Presbyterian, doesn't it? I mean, look at all the fun we have at church.

I double-checked with Sky about the name of Mrs. Mryc. She is a Mrs. and it is spelled Myrc. I was sure she was a he, what with the cowlick (Sky usually reserves the cowlick for self portraits), the pants and her lack of cleavage--not at all like her BFF (her cousin? her lover?) Ms. Jorji, who has very accurately-depicted breasts. Have any of you ever seen such attention to detail? Not many 8 year-olds remember to properly accentuate the cleavage. I don't know whether to be proud or disturbed. And, really, it's a wonder the kids and I don't get in trouble for talking during church. Sometimes these things take a lot of explanation.

*****

There's a lot more to say about this picture, but I think I will stop and just let Jack, asome kid, cool dude, and flying baby speak for themselves. Oh, and I know I should quit letting my kids write my blog for me. I keep resolving to do that, and then they come up with gems like this one. Can you blame me?

If you'd like to enjoy more of Sky's often inappropriate artwork, follow the label "Illustration by Sky."

The Three Cows

Well, somehow Sky (age, 8) has convinced his speech therapist to become his creative collaborator. They threw this story together one 45-minute session. I'm not sure there's any great therapeutic benefit to this (you tell me--maybe there is). It DID totally reignited Sky's enthusiasm for speech, so there's that. Hope you enjoy it!

(click on pictures to enlarge_