#candycorn

Sky will soon turn 13 (GAH!), and, so, this Halloween, he found himself in the existential morass of really wanting candy but no longer wanting to pretend that dressing up, knocking on people's door, and asking them for candy is anywhere close to a thing that people should do. Granted, trick-or-treating and Sky have always had a very fraught relationship. I don't think I am exaggerating when I say that there are an infinite number of costume- and candy-related meltdown triggers that come together in a perfect storm on the final day of every October. My hope was that this Halloween would be the one where he was just too cool to care about any of it anymore, so we didn't talk about costumes when I shopped for Pink and Stow, and he seemed ok with just handing out candy.

But, then for reasons probably too complicated to describe in detail, this year Sky decided that candy corn is the hill he's willing to die on (figuratively, of course). It all started when we got boo-ed. Do you guys know about "boo-ing"? Someone leaves a basket/bucket/bag of goodies on the front porch, rings the bell, and runs away. Then you are left with some snacks and trinkets and instructions to pay it forward. One of the requirements is that you hang a sign letting people know you've been boo-ed. In theory, this is an awesome way to build holiday cheer and have fun with your neighbors.

In practice, my kids are insane.

Stow quickly figured out that this whole boo-ing thing could be quite a racket. Within 24 hours, unbeknownst to me, he removed the fancy handmade sign (see below) I'd hung on the door. Only I didn't know it and was mortified to see that not only was it missing but that we'd been boo-ed again. You guys, I can't handle THAT much holiday cheer. I can barely manage a shower most days. When the first sign disappeared, I thought maybe someone had knocked it down mistakenly (and also that maybe I was being punished for being such a lazy cheapskate who didn't want to change the color ink cartridges in the printer). So, the second time, I hung the pre-made version of the "We got boo-ed" sign. That one disappeared, too. Then I had Sky make one. At least he's got a better sense of design than me.

My sign.

It wasn't until I caught Stow in the act of taking down the third sign, that I understood what was happening. For all his social skills issues and troubles with language, that child is extremely adept at getting what he wants. And, in this case, he wanted more cool Halloween stuff. No amount of reasoning could convince him that he shouldn't keep taking down the sign. So, we compromised, and Sky's second sign (the 4th one overall) said, "We got boo-ed" in big letters and then "But Stow wants more candy" in fine print. Stow agreed to this compromise but only after I let him make a sign of his own with larger print.

Sky's second sign and Stow's amendment (name redacted)

******

Anyway, back to candy corn...the kind neighbor who boo-ed us, knew about our allergies and so left three allergy-friendly packages of it for the kids. So nice, right? I mean, really, our neighbors are the best (and they also read this blog, so I hope they won't stop including us in their amazing-ness after reading this post). After all, what's not to like about candy corn? I'll tell you what's not to like -- it was as if that tiny packet of candy corn opened a long-sealed portal to all the things Sky once loved but can't eat anymore. You know how kids on the spectrum can get stuck on a single idea and not let it go? Well, Sky's perseveration planted itself squarely in Candycornville and never left. Multiple times a day, I was treated to lectures and treatises on why I needed to make sure they all had a steady supply of candy corn. It was only fair. Other kids could eat it. It is THE BEST CANDY ON THE PLANET.

Candy corn. You guys.

Seeing no other way, I asked my friend where she'd gotten the candy corn and went to get some. It was sold out, so I got another variety pack of Halloween snacks the kids could eat. For a millisecond, that seemed to appease Sky.

Then on Sunday, our church had a Halloween party. Sky, of course, still being in the morass of pre-teen-ness, decided to stay home but reminded me (more than once) to bring home some candy corn from the party. And, I planned to bring him some, I really did. I even checked the package to make sure he wasn't allergic. But, then Stow almost choked on one, and I decided that candy corn is indeed the Devil's candy and not needed in our house. Miraculously, Sky seemed to forget about candy corn for awhile--long enough, in fact, that I thought maybe we were past it. It was as if the candy corn wars had reached a tenuous, yet hopeful, cease fire.

Of course, if life has taught me anything, it's taught me that siblings have a way of making things a lot harder than they need to be. That night at dinner, Pink announced out of the blue, "Mom, remember when Stow almost choked on that candy corn?"

In my brain, panic. I mean, of course I remember the near-death experience that happened mere hours before, but why, oh why, must this child take this shot across the bow, re-opening the possibility of a candy corn barrage? Pink's warning shot hit its target square between the eyes. With the words "candy corn," Sky snapped to attention and went into full perseveration meltdown mode. Stow, seeing his chance, decided this would be the best time to stand on his chair and do a little candy corn dance. Any hope of getting back to a peaceful dinner disappeared as we heard Sky in his room weeping, the words CAAAAAANDY COOOOOORN on his lips. For the rest of the night and into the next morning, whenever Sky was in earshot, Stow would hiss whisper "caaannndy coorrrnnn" as if possessed by some little brother candy corn demon. It took several meltdowns or near meltdowns for Sky to figure out how to ignore him, and when he finally did I gave him a big hug for his effort.

Seeing this, Stow, wracked with jealousy at the obvious turning of my affections, went into a full-blown meltdown of his own. "You don't loooooove meeeeeeee!" he cried, and then proceeded to repeat those words nonstop for the next 30 minutes until we were able to get him onto the bus and send him off to school.

#candycorn
#rememberthecandycornalamo
#boohoo
#parentinganinja
#thisiswhywecanthavenicethings
#halloween2017






You've been booed image from: https://www.happinessishomemade.net/free-youve-been-booed-printables/

Bite Me image from: https://www.etsy.com/listing/464721104/killer-crafts-candy-corn-bite-me-plate?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=corn%20plates&ref=sr_gallery_26

50 Easy Steps to Sunday Morning Waffles

1. Refuse to get out of bed until the absolute last minute even though each kid has come in twice to report on everything from the content of their dreams to details of their current Lego creation to the quality of their bowel movements.

2. Walk into the kitchen only to find that it and the living room look like something from The Hangover even though everything was in its place when you stumbled into bed 6 hours earlier.

3. Have a mini-stroke and go back to bed.

4. Try hard to ignore the increase in decibels coming from the other room.

5. Give up on sleeping, say a small prayer, and get up for a second time, hoping that somehow things are better.

6. Find that very little has changed but muster up all of your patience to calmly tell the children that you will make pancakes if they get things cleaned up.

7. Meet resistance. They want waffles.

8. Agree to make waffles while desperately wracking your brain to remember where you put the waffle iron.

9. Experience a wave of relief when one of the kids runs to the right cabinet and excitedly pulls out the waffle iron.

10. Have second thoughts when you realize they've pulled out the Darth Vader waffle iron.

Darth Vader's handiwork

11. Tell the kids to get out the ingredients while you go to brush your teeth in an attempt to buy yourself a few more minutes of peace and quiet.

12. Be met by an anxious pre-teen who tells you he can't find any pancake mix.

13. Tell him to look again. And, then again.

14. After he tells you that he can't find it a third time, look for yourself.

15. Realize too late that the three attempts to find pancake mix have triggered an anxiety-induced meltdown.

16. Try to talk your pre-teen down from his meltdown while rummaging through the pantry.

17. Determine that there is indeed no pancake mix in the house and that you don't have time to go out and buy some.

18. Look in three other cabinets hoping that pancake mix will somehow miraculously appear while simultaneously debating the merits of running to the grocery store at this time on a Sunday morning.

19. Suppress your growing sense of panic when the younger two children come to see what all the racket is about and immediately insist they be able to help.

20. Despite your best efforts, watch as the melting down older son triggers a completely different (but equally difficult) response in the younger son.

21. Dodge incoming jab, shoves, and the occasional flying object from melting down younger son who is overwhelmed by the noise and chaos.

22. Hand younger son an iPad in an attempt to keep him from single-handedly triggering the apocalypse.

23. Grab your Kitchen Survival Guide (seriously, you guys, my mom gave this to me for college graduation, and I STILL use it more than any other cookbook I have) and frantically search for a waffle recipe.

24. Realize (with a wave of relief) that you have all the ingredients the recipe calls for.

25. Talk your older son down from his meltdown by giving him the job of measuring everything.

26. Plug in the Darth Vader waffle iron and try to remember how you're supposed to know when it's hot enough.

27. Help pre-teen find and mix everything while demonstrating the difference between sifted and unsifted flour but not before rummaging through the cabinets as you try to remember whether or not you have a sifter (you do).

28. While you're waiting for the waffle iron to heat, send the pre-teen to the garage freezer to look for sausage links.

29. Immediately regret that decision as he can't find sausage either and retreats to his safe space in an attempt to avoid a second meltdown in an hour.

30. Go to the garage and get the damn sausage yourself.

31. Start heating the sausage and realize that finally the waffle iron is ready.

32. Put the first batch of batter in.

33.  Wait....for a really long time

34. Try to ignore your 12 yo who is in the other room muttering under his breath about how big a mistake your failure to just go to the grocery store and buy more pancake mix was.

35. Wonder whether the light was supposed to be on or off and open the waffle iron to check.

36. Decide the light is supposed to be off.

37. Wait.

38. Realize you can't keep the 6 y.o. distracted by iPad videos forever.

39. Tell him to get out forks and put fruit on all the plates.

40. WILL the waffle iron to heat the waffle faster.

41. Peek inside the waffle maker again and decide there's no way you're making church, especially since the 12 yo is starting to panic again, and the 6 yo is freaking out about not having a waffle, yet.

42. After waiting for 30 minutes with no luck, get out the back-up waffle maker.....you know, the one you got for your wedding but completely forgot you had.

43. Plug it in.

44. Try to remember if the green light is supposed to be on or off.

45. Decide it's supposed to be off.

46. Wait.

47. Even though the Darth Vader waffle is clearly not done, scrape it out of the waffle maker and give half of it to each of the younger kids since they're the only ones around and seem desperate enough to eat anything.

This all-American breakfast brought to you by Moe, the world's greatest mom.

48. As you're putting batter into the back-up waffle maker, realize you only have enough for one more waffle.

49. Begin negotiations with three children to figure out how to avoid World War III.

50. Wish you never got out of bed.

On Getting Pummeled

Growing up in a small town in the rural Midwest, not surprisingly, I didn't get into many fist fights. In fact, I was only ever punched once, by a kid named Dallas who should've been in 8th grade, not with me in 6th. Dallas stood beside me in lunch line. I was the last name in the alphabet, and he was the first kid to transfer in that year. When Dallas wasn't in detention or in-school suspension, he stood next to me in line and sat next to me at lunch.

Dallas and I didn't have much in common, so we rarely spoke to one another. He sought to be (and on some level was) an intimidating kid. You'd think, then, that I would give Dallas his space. And, normally, I did, but you guys, 6th grade was rough; I was in a class with all sorts of kids who got into all sorts of trouble, and on this particular day, I guess I'd had enough. Because, when Dallas started cursing because our line wasn't getting picked to go in for lunch, I turned to him and pointed out that if he'd shut up, our chances of going would increase considerably. He responded by shoving me, so I shoved him back. That's when he clocked me.

I don't know if you've ever been punched in the face, but it's a weird sensation: CONK! That's what it sounds like, followed by an odd ringing sound (I mean, I guess I understand the phrase "getting your bell rung" better thanks to Dallas). I was less hurt than really, really shocked that he actually hit me. Sure, I ended up with a brushed cheek and a stiff jaw, but more than that I walked away with a visceral understanding of just how unnatural violence is. Bodies aren't meant to be punched, and there is no way to reason around the violation that occurs when that line is crossed.

*****

Our bodies have limits; this is the lesson I've been reminded of over and over again over the past few years. We are not Wile E Coyote who can peel himself up off the road, re-inflate, and jump back into the chase. In fact, these bodies we inhabit are very, very fragile. Ren's brother, full of life one minute, expired on the sidewalk the next. Ren, able to run a marathon one night and unable to walk the next day. The body, it betrays us.

Part of why I am thinking about this is because I have watched the man who used to run to the peak of the mountain to check out the view before running down to get me and take me along to enjoy it be completely waylaid by his own body. Ren has literally shrunk before my eyes, bending further and further forward as his spine slowly but surely gives up on him. We have been together for 20 years, and this tragic saga has dominated the last six. It used to be that the most stressful part of the saga of the spine was that we didn't know what would happen next--it was like watching a super slow-motion chain-reaction train wreck with no end in sight. Now, though, the nature of our tragedy is clear. Ren's back is done; he will have a fusion of the thoracic spine, T1-T12--twelve full levels compared to the two and three levels of his previous two fusions. The surgery itself will take 6-7 hours with another 2-3 hours in the recovery room. After that, it could take 1-2 years before he is "back to normal," though we all know that normal is long gone.

I don't know how to describe this disruption to our lives as anything other than violent. The children no longer remember life before Dad's back went south. They don't remember the hiking, the running, the playing. They don't remember Dad not being in pain. It's hard not to feel mad and sad and jealous of all the people around us who are going about their lives raising children and building amazing (not tragic) memories. Surgery #6 will stop us in our tracks. I will become a single mom. Ren will miss months of our children's lives.

The other reason I've been thinking a lot about violence and the limits of the human body is the very real struggle we are having with aggressive meltdowns. I've written about autism and meltdowns many times before (here, here, and here, for example), but this is different. Those meltdowns tested my mental stamina. These test me physically. And, what I have learned is that I am not strong enough. Because I am mom, I am the recipient of most of the aggressive meltdowns that happen at our house. And, because I am not a cartoon mom, I end up with scratches and bruises and wake up with aches and pains. 

Since I am not strong enough to defend myself, Ren has been intervening. Perhaps the greatest irony of all is that despite his crappy spine, Ren is still stronger than me. When a meltdown starts, using some story about Power Rangers or superheroes or Godzilla as a distraction, he swoops in and employs a simple judo move to neutralize the situation. Then he sits calmly and waits for the episode to pass. It makes me mad that I am not strong enough to hold my own; I hate that I crumble after a few good right hooks. With a spine like his, Ren shouldn't be wrestling on my behalf.

We are working hard to get to the other side of this aggressive meltdown phase before surgery #6 at the end of July. These days, I have a pretty good idea of my outer limits. It scares me to know that the challenges on the near horizon far exceed them. People often say that God doesn't give you more than you can handle. I think I used to believe this meant that the struggles helped us build character. I don't really believe that any more. Because, whether I have the strength to face the impending challenges or not, they are coming, and I know that I have no choice but to put my head down and walk into the massive raging hurricane, one foot steadily in front of the other.

Clearly This is Why We Can't Have Nice Things

A friend (who isn't on FB and who also doesn't read my blog so never knows I talk about her quite regularly in my posts) told me about the calming buckets she'd made for her kids to use whenever they just needed to chill out. In each bucket is a collection of fidgets and art supplies for each child to use for as long as they needed in order to become human again after a meltdown or argument. I liked this idea a lot. But, I also knew that, since I am not nearly as organized as my friend, there wasn't enough room on top of the refrigerator or in my closet for three whole buckets of stuff and that if I didn't put them in either of those places, the items would disappear almost immediately into the flow of toys, books, papers, and pens that always seems to be migrating around the house.

Still, I liked the idea of giving the kids an emergency kit to use BEFORE their behavior devolves into a big fat mess of screaming/crying/fighting, which is what seems to happen most evenings just about dinner time. So, last weekend, while I was waiting for Pink P to finish at a friend's Chuck E Cheese party, I went to the dollar store and bought a bunch of tactile balls. Then I went online and ordered a couple of liquid timers, some stretchy string, and a glitter wand. Altogether, I spent about $15.

One shining moment: the box of stuff.

When the stuff arrived, I threw it into a box that was both smaller and a different color than all of the other sensory boxes. Then I sat the kids down and went over the ground rules. "THIS," I declared, "is our emergency sensory box. When you feel like you want to yell or cry or hit, I want you to get this box, take it to the couch, and spend as long as you need to calm down." They were rapt with attention--you know, when they weren't trying to fight jockey with each other to be the first to grab one of the bright shiny sensory balls. "But, WAIT," I continued. "There are some rules. First, you can only use this box when you are sitting on the couch. Second, you cannot throw the balls, and third, everything must go back into the box when you are done."

They seemed to understand. They really did.

But then all of the balls disappeared and the stretchy strings were turned into lassos and the whole thing fell apart, It turns out that missing emergency sensory box balls are perfect triggers for mom-sized meltdowns. Who knew?

Epic Summer Saga 3: How Can Video Games Lead to Meltdown? Let Me Count the Ways

Any parent to boys, especially boys with Asperger-ish tendencies, knows that video games can be a blessing and a curse. Nothing short cuts sensory overload and anxiety-induced meltdowns quite like a screen full of computer graphics. Then again, nothing can trigger a meltdown quite like my kid's obsession with games like Mine Craft.  Just over a week ago, Sky got an upgrade on Mine Craft. Things have been hellish ever since. Here's a list of meltdown triggers since then:

1. Four words: revert to factory settings

The day after Sky got his upgrade, his Kindle Fire inexplicably uninstalled itself. Apparently Sky had no idea something like this could happen. How could technology fail him so? Oh, the horror! Oh, the injustice! Oh. My. Gosh. I've never seem him meltdown so quickly and so thoroughly as he did when he turned on his Kindle to discover a black screen.  The apps, the books, the everything? Gone. Pfft. Vanished without a trace. And he was inconsolable. In the end, I had to promise him a day of unlimited play time once the Kindle was fixed (thus setting myself up for the next major cause for meltdown...) just to keep him from hyperventilating.

2.  Kindle Free Time

Do you guys know about this app? You pay $3 a month, and then you get access to tons of free kids books, games, apps and movies. More importantly, though, you get the ability to set usage time limits. We love it. Sky, not so much. Sky's Kindle is set to allow unlimited access to books, but his app usage is limited to an hour a day in the summer. Ironically, we thought putting Free Time onto Sky's Kindle would help eliminate the constant negotiations we endured when he played the DS.

Ah, nope. According to Sky, using Kindle Free time = torture. He even polls his friends to see if their parents are as mean as we are. According to Sky NONE of his friends have limits set on their gaming. This may actually be true. I've asked several and only found one other parent who seems to have some means of controlling how much her kid games.  Maybe those kids don't get as obsessed with games as mine. Maybe their parents don't care how much time they spend glued to a screen. I'm not sure, but I do know that Sky thinks we must be the meanest, most strict parents in like ever.

Major meltdown number two came when I told Sky he could only play for three hours the day after Ren fixed the Kindle instead of the initial all day I'd originally promised. See, I figured it would take  Ren a couple of days to get it fixed, but actually, it only took an hour. So, the next morning, when I gave the Kindle back to Sky, I explained that he would get three hours instead of the usual one since he'd missed play time the day before. Silly me thinking he'd adjust to the change, thinking he meant it when he said he understood why the daily limit was (an incredibly generous) three hours. Silly me, when I was shocked by his meltdown.

3. Taking Away the Device

After two consecutive days of meltdown, on the third day, I suggested that he take a break from his Kindle.

Meltdown.

I mean, I didn't even have the chance to talk him through the pros of giving it up for a day or two. Ren and I were headed out of town, and I knew I couldn't leave a highly meltdown-prone Sky with my parents. But, I also couldn't give in and give him his Kindle after such bad behavior the days before. So, I told him he could play his DS a little.

And, he played non-stop pretty much the entire time we were gone.  I don't know about you, but when I leave my kids with someone else, I don't expect them to strictly enforce all of our rules, especially the ones about how the kids spend their free time. So, by the time we got back, Sky had played DS for hours and hours.  I suppose this wouldn't have been a big deal, except that it was Father's Day.

4. Father's Day Cards

Ren and I spent Father's Day weekend driving to our new city to close on our new house. Six hours each way, with a house closing, house cleaning, and construction preparation sandwiched in between. When we finally got home, it was 8:30 and time for the kids to go to bed. Sky didn't even realize we'd returned because he was so obsessed by his DS. But, as soon as I was able to get him away from his game, he realized that he hadn't finished the Father's Day card he'd started making hours before.

Meltdown.

How could we have gotten home so soon? Why didn't Big Sissy make him stop playing his game? Why didn't someone remind him to color it? Why, oh why, was Father's Day ruined by this ill-fated turn of events?

The cover of the Father's Day card Sky didn't finish. It's a super hero with a vacuum, and really, I can't think of a better homage to Ren than this.

By the time we got him through the Great Father's Day Meltdown of 2013, I was convinced that everything had the potential to cause video-game-related meltdowns. This made me more determined than ever to get him away from his games for awhile.

Thankfully, finally, on day five, Sky agreed he needed put his devices away** for the day. And, we had a great day, a great one!


**TODAY'S PSA: Apparently, one must say "put them away" and NOT "put them into time out." Even though these are the exact same thing in practice, one phrase causes meltdowns and the other does not.


Part 1
Part 2
Part 4

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!

Torn

Sky drew this for you guys. Apparently the hero is a guy with a special brain like him. Like all of his stories, it's fascinating, well-developed, and fun to read. But do you see the faint lines in the paper, the places where edges don't quite meet? Maybe you can't see them. But, I can. See, this is the story I tore into 8 pieces, this story he spent over an hour drawing. Of course, I didn't plan to tear it. And I didn't know he'd spent so much time on it. But, there you have it. 

The story I tore.

Some of you probably think it's no big deal that I tore up a piece of paper. Others of you might think it was a horrible thing to do. I can tell you I feel guilty about it, even now. 

To me it represents the way our family's fabric is ripped apart by autism. I don't mean to be melodramatic. But, then again, maybe I do. See, I ripped this story in the middle of Sky's third major meltdown in less than 24 hours. I was hoping to get his attention, to help him see how his destructive behavior towards others hurts them. It didn't work. All it did is give us both a taped-up reminder of the things we can't quite fix.

This one started when Sky discovered that Stow had dumped out his rock collection. As soon as Sky saw his stuff on the ground, he started hitting Pink P and screaming. He was mad at Pink for not stopping Stow. It takes approximately 1 second to go from peace to chaos at our house. I can be standing 5 feet away and still not get there in time.

When Sky melts down, life stops indefinitely and everything falls apart. No matter what is going on, safety becomes the primary concern.  I grab Sky and Ren gets Stow and Pink.  Ren's back can no longer handle the wrestling it takes to get Sky into a safe place until the meltdown subsides. So a lot of times, it feels like I am the source and target for this rage that comes from some place none of us can understand. After the meltdown, when Sky has come back to himself, he usually can't explain why he melted down or  remember what he did during the meltdown. 

This is not a tantrum. You need to know this. There are distinct differences. Children who throw tantrums do it to get what they want. There is a clear desire and the tantrum is a way of manipulating the situation to their favor. They will be aware of who is watching and will take care not to hurt themselves. Tantrums end when the child gets what he/she wants or the parent is able to resolve the stand off in different way. Meltdowns aren't like this. Meltdowns happen when a kid is somehow overstimulated and out of sorts due to lack of sleep, sensory overload, illness, confusion, frustration, or whatever. When a kid melts down, he's not in control. He can't usually tell you what made him melt down. He is not aware of who is around or how his action affects others. He will hurt himself and those around him with no knowledge that he's doing it.  Just as there is no way to predict when a meltdown might start, there's also no way to predict when it will end. 

This is the picture Sky drew after the meltdown, when I brought him to my office to give him some peaceful one-on-one time with me.

Fortunately, Sky doesn't go through meltdown phases nearly as much as he used to, but they are still a real and peace-shattering part of our lives. Not long after any given meltdown, Sky is fine. Since it's not a conscious act on his part, he also suffers no residual guilt or anxiety. That, to me, is the cruelest thing about the meltdowns and the cruelest thing about autism. Because it's always the rest of us who are left to pick up the pieces.

Top 10 Sky Meltdown Triggers

Well, I made it ten days. Ten days until I broke down and bought a Diet Coke. So not only did I fail in my goal, but I'm probably also damned (click here if you have no idea what I am talking about). Like I said, I'm new to the whole giving up something for Lent thing, so I'm hoping there are do-overs.  Or maybe my inability to make it for forty days proves my spiritual inferiority? I'm not sure, but I tend to think God doesn't care if I drink Diet Coke or not. I'm a free-wheelin' Protestant, though, so what do I know?

I'll bet you're wondering what drove me to drink (Diet Coke, obviously!). I'm pretty sure it's the full moon. I mean the full moon and its apparent impact on the behavior of a certain 8 y.o. ASD kid I know. Sometimes Sky seems to come a bit unhinged, and I am starting to see that things like changing seasons, unpredictable weather, and the phases of the moon influence this.

The behavioral challenges vary. Sometimes it's a type of echolalia marked by the repetition of certain unsavory words or phrases ("butt" and "poop" come to mind). Other times it's heightened anxiety, and this time it's an increased likelihood of meltdowns. I've said this before, but when Sky melts down, everything else grinds to a halt (although we are getting better at, whenever possible, isolating him with one parent while the other goes about the daily routine with Stow and Pink P). What makes me crazy is that it is nearly impossible to predict why or when Sky will melt down with any kind of accuracy. Two days ago it was a lid left off of a marker (not even his). Today it was Pink P's unclear explanation of the cupcake picture she drew at school.

That said, certain things are sure to get his goat if he's at all out of sorts. Here's a list of the Top 10 Sky Meltdown Triggers:

1. Pink P: Mommy, I'm wearing my fast shoes today, so I'm a cheetah. Sky: No, you're not.  Pink P: Yuh-huhh. Sky: (*meltdown*)

2. The sauce touched my rice! (*meltdown*) 

3. Stop singing princess songs! (*meltdown*)

4. The sun's not out yet, why is it time to wake up? (*meltdown*) 

5. "Homework" doesn't make any sense. We work at school, we don't work at home. Whoever invented homework didn't know what they were talking about. (*meltdown*) 

6. Stow, don't touch my stuff! (*meltdown*) 

7. Nobody understands me! (*meltdown*) 

8. Sky: Pink P that's not how you spell [INSERT WORD HERE]. Pink P: Yuh-huhh Sky: (*meltdown*) 

9. Babies make bad choices! (*meltdown*) 

10. I wish I was an only child! (*meltdown*), or alternatively, I wish I was a twin! (*meltdown*)

Clearly, he's a boy struggling for control of his world, and we'll keep working to help him find the balance between being able to accept what he can't control and being able to take control when he can. Until then, I'm probably gonna need a few Diet Cokes, though. 

Two Years Out: Reflections from an Autism Parent

Two years ago this month, we got Sky's autism diagnosis. As I've said before, I was less shocked than relieved to finally know why life with him was so darn difficult (link). So, two years out, here's what I want you to know about life with autism:

Kids with autism have what's called a pervasive developmental disorder, a term you probably haven't heard unless you're living it. Post diagnosis, I quickly learned how totally appropriate this designation is. Autism impacts every aspect of my son's life--his relationship with food and sleep, his experience in school, what he obsesses about, the way he sees, hears, smells, and feels, how he understands what people say and do. In other words, essentially every point of contact he has with the world around him is impacted by autism. It also impacts every aspect of our lives with him; it’s pervasive because no one in our support network escapes his autism unscathed. Everyone who interacts with him has to have a deep understanding of his dietary needs. They also have to understand how to talk to him so that he can understand what they are saying. They have to know the routine and be able to stick to it. They have to be infinitely patient (especially when he interrupts for the millionth time to explain in excruciating detail a scene from a movie he watched months ago). Most importantly, they need to know what to do if he has a meltdown.

When my son has a meltdown, time stands still. He’s so loud, we couldn’t carry on a conversation if we wanted to. He’s totally out of control of his words and thoughts. When he melts down, I have to drop what I am doing, go to where he is, and try to talk him off the ledge. If that doesn’t work, I have to hold onto him until I can walk him to his safe zone where sometimes (but not always) he can calm himself down. Meltdowns happen when he is overwhelmed, and he can get overwhelmed for myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick. Maybe someone said something he couldn’t understand. Maybe Mom is a little tired. Maybe there’s a bug on the window sill. Maybe Sister is singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t answer the question fast enough. Maybe his sock has a tiny hole. The list of possible triggers is maddeningly endless, and there is no way to completely eliminate them. We do our best by maintaining vigilant consistency in our routine and our diet. If it’s not on the schedule, we don’t do it.

When you're handed an autism diagnosis, you aren't also handed an autism handbook. That’d be way too easy. Instead, you're given a list of suggestions and sent out on your own to make sense of it all. In our case, our list said he might benefit from occupational therapy, he should join a social skills group, he'll probably be bullied, so he'll need support in school, and if the sensory stuff gets to be too much, he might need medication. Oh, and don't believe the stuff you read about diet. None of that's true, and if you read it, it might scare you.

It took me awhile to figure out that the person who diagnosed Sky was decidedly afraid of biomedical interventions, though I still have no idea why. See when you have a kid with autism you also unwillingly stumble into two very contentious debates--one is about the role of vaccines in causing autism and the other about whether autism can be "cured" with diet, supplements, and other interventions. Your doctor can't help you understand these debates. In fact, most pediatricians know surprisingly little about ASD and what to do about it. If you're lucky, like we were, you will at least have one that's willing to consider the information you present about these issues and try to refer you to where you need to go. If you're even luckier, you'll find a doctor like our new one who is up on the research and who knows which tests to run and which diets to try and who knows what to do when an ASD kid is sick.

The thing is, there is no road map for any of this. It takes a good year post diagnosis to figure out how to start getting the services you need. In our case, it took another six months to find a good doctor and to understand enough about the diet stuff to embark on a gluten free, casein free, organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.

And you can’t escape your life. You inhabit it every single day with the knowledge that it might not get easier and that the only people who really understand what it's like to have an autistic kid are people with autistic kids. We're like an exclusive members-only club full of people who really don't want to be there. You're lucky you can’t join this club. Please know how lucky you are. My son’s case is relatively mild. He can talk. He doesn't run away or stay up all night. He’s potty trained. He keeps up in school. So, we're lucky, too. I know that, and yet, I can't help but mourn for all we’ve lost to autism.

It’s taken awhile for me to accept that this life is mine, and as I have, I’ve come up with a list of things I want people with “neurotypical” (aka non-autistic) kids to learn from my experience.

Here you go:

1. Know that some things are a lot easier for you than they are for other parents and that doesn't make us bitter or jealous. We just want you to understand things are really REALLY hard sometimes.

2. Don’t judge the parents whose kid is total chaos. Chances are he’s melting down, sensory over-stimulated, or completely confused by the social cues coming at him from all sides.

3. Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Baby sit. Bring the grown-ups coffee.

4. Educate, I mean really educate, yourself about autism (and don’t use television or movies to do it).*

5 Resist references to Rain Man or that kid from Parenthood. As the saying goes, “If you've met one kid on the autism spectrum, you've met one kid on the autism spectrum." They can all be very different from one another.

6. Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.

7. Resist the urge to tell a kid she's too old to chew on a baby toy/ride in a stroller/hold mom’s hand/get carried. This may be the only way the kid can get from point A to point B without everything falling apart.

8. Understand that most ASD kids don't "look" autistic (whatever that means).

9. Realize that to some kids a trip to Walmart/an amusement park/the mall/a grocery store/pretty much anywhere can be like running the sensory gauntlet without a sword.

10. Know that even though you can't really understand, you can still help.


For my reflections on year one, click here.


* The HBO movie about Temple Grandin (called Temple Grandin) is the exception. You can also see her TED talk.

What You Need to Know: Two Years Out

First, this. A statement from Autistic Self Advocacy Network about the events in Connecticut.

The shooter was autistic. So what? Please know all you can about autism before you even begin to think about what that means. My guess is that this fact alone is irrelevant. The shooter was also 20, male, the son of a teacher, and the youngest in his family. And, there's a lot we don't know and shouldn't know about him, his family, or the situation. Please don't let mainstream media tell you what you know about autism.

Ren and I are heartbroken for all involved just like the rest of our nation in mourning. What else can we say? What can anyone say?

*****

And now, my original post for today, this two-year anniversary of Sky's diagnosis--What You Need to Know:

Kids with autism have what's called a pervasive developmental disorder, a term you probably haven't heard unless you're living it. Post diagnosis, I quickly learned how totally appropriate this designation is! Autism impacts every aspect of my son's life--his relationship with food and sleep, his experience in school, what he obsesses about, the way he sees, hears, smells, and feels, how he understands what people say and do. In other words, essentially every point of contact he has with the world around him is impacted by autism. It also impacts every aspect of our lives with him; it’s pervasive because no one in our support network escapes his autism unscathed. Everyone who interacts with him has to have a deep understanding of his dietary needs. They also have to understand how to talk to him so that he can understand what they are saying. They have to know the routine and be able to stick to it. They have to be infinitely patient (especially when he interrupts for the millionth time to explain in excruciating detail a scene from a movie he watched months ago). Most importantly, they need to know what to do if he has a meltdown.

When my son has a meltdown, time stands still. He’s so loud, we couldn’t carry on a conversation if we wanted to. He’s totally out of control of his words and thoughts. When he melts down, I have to drop what I am doing, go to where he is, and try to talk him off the ledge. If that doesn’t work, I have to hold onto him until I can walk him to his safe zone where sometimes (but not always) he can calm himself down. Meltdowns happen when he is overwhelmed, and he can get overwhelmed for myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick. Maybe someone said something he couldn’t understand. Maybe Mom is a little tired. Maybe there’s a bug on the window sill. Maybe Sister is singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t answer the question fast enough. Maybe his sock has a tiny hole. The list of possible triggers is maddeningly endless, and there is no way to completely eliminate them. We do our best by maintaining vigilant consistency in our routine and our diet. If it’s not on the schedule, we don’t do it.

When you're handed an autism diagnosis, you aren't also handed an autism handbook. That’d be way too easy. Instead, you're given a list of suggestions and sent out on your own to make sense of it all. In our case, our list said he might benefit from occupational therapy, he should join a social skills group, he'll probably be bullied, so he'll need support in school, and if the sensory stuff gets to be too much, he might need medication. Oh, and don't believe the stuff you read about diet. None of that's true, and if you read it, it might scare you.

See when you have a kid with autism you also unwillingly stumble into two very contentious debates--one is about the role of vaccines in causing autism and the other about whether autism can be "cured" with diet, supplements, and other interventions. Your doctor can't help you understand these debates. In fact, most pediatricians know surprisingly little about ASD and what to do about it. If you're lucky, like we were, you will at least have one that's willing to consider the information you present about these issues and order the appropriate tests or refer you to the appropriate professional.

The thing is, there is no road map for any of this. It takes a good year post diagnosis to figure out how to start getting the services you need. In our case, it took another six months to understand enough about the diet stuff to embark on a gluten free, casein free, organic diet. It all takes time. It all takes money, and meanwhile, you're still living with a kid with autism.

It’s taken awhile for me to accept that this life is mine, and as I have, I’ve come up with a list of things I want people with “neurotypical” (aka non-autistic) kids to learn from my experience.

Here you go:

1. Know how lucky you are.

2. Don’t judge the parents whose kid is total chaos. Chances are he’s melting down, sensory over-stimulated, or completely confused by the social cues coming at him from all sides.

3. Don’t be afraid to reach out to a family affected by autism. Offer to help. Drive their neurotypical kids to practice. Baby sit. Bring coffee.

4. Educate, I mean really educate, yourself about autism (and don’t use television or movies to do it).

5. Resist references to Rain Man or that kid from Parenthood. As the saying goes, “If you've met one kid on the autism spectrum, you've met one kid on the autism spectrum." They are all very different.

6. Don’t bat an eye when you see a kid who's clearly too old for diapers. Believe me, his mom already knows this.

7. Resist the urge to tell a kid she's too old to chew on a baby toy/ride in a stroller/hold mom’s hand/get carried. This may be the only way the kid can get from point A to point B without everything falling apart.

8. Understand that most ASD kids don't "look" autistic (whatever that means).

9. Realize that to some kids a trip to Walmart/an amusement park/the mall/a grocery store/pretty much anywhere can be like running the sensory gauntlet without a sword.

10. Know that you can't really understand, but you can learn how to see all the difference in the world with openness and acceptance.


For my reflections on year one, click here.