Normal

He snuggles up to me in bed. He breathes on me. He wraps his arms around me. He is the most beautiful comforter in the world.

He hits me. He throws toys at my head. He seeks destruction in any form. He is wild.

He calms down. He breathes. He counts. He counts all the time. Sometimes to 20. Sometimes more.

He goes in his room when he can’t stop. When he can’t stop himself. He throws himself against the door. The house shakes. The loudness is both deafening and silent as we move through our routines.

Sudden calm. The walls are still. It is safe. He is safe. He is quiet now. Hugging his daddy. Asking for mommy. Blue eyes wide and searching. A pep in his step. A playful smile.

What just happened? I don’t understand.

Little Boy Lost

That is the last picture of Case. I took it in February of 2013.

I hate this photo.

That little boy went away and never came back. I grieve him every single day.

Sometimes, kids with autism are born and you know early on that they are different.

Sometimes, kids with autism are born and you have no idea there is anything different about them until 18 months or so.

My First Case hit every milestone. Laughed all the time. Knew all his vocabulary words. Pointed at pictures in books and labeled them appropriately. Went out with mommy every single day on so many adventures and never got upset or had meltdowns. We could go anywhere on a whim. And we did. First Case loved going to the marina in Annapolis. Strolling down Dock Street. Watching boats. Going to the science museum and looking at dinosaurs and sitting through planetarium shows with ease. First Case thought it was funny to shrug his shoulders and say "What in the world?" to me whenever I caught him doing something nutty. He once danced to Kelly Clarkson on the beach. The song was "Catch My Breath" and somebody nearby started playing it. He was building a sand castle and just started moving to the rhythm. I bought him an ice cream cone because it was the cutest thing I had ever seen in my life. I thought First Case might end up being a chef because he would eat and seemingly savor absolutely anything. We went out to dinner once a week because Daddy worked at night. He ate hummus and tarragon chicken salad and egg drop soup. He was a breeze.

And then the wind stopped. Everything stopped. The talking. The pointing. The interests. The books. The laughing. The eating. The dancing.

And I called Anne Arundel County and asked them to send a developmental specialist to the house to evaluate him. I thought he might have a delay. A very large woman who spoke way too loudly and took up all the space in our apartment spent about 30 minutes with First Case and asked him to do various things with blocks and toys and little contraptions she had brought. When she was done, she asked Matt and I to wait in another room while she did paperwork.

When we came out, she was sitting on our couch. And she started crying and said, "Unfortunately, your son appears to be on the autism spectrum."

And I called and complained to her supervisor and anyone in Anne Arundel County who would listen to me because she had no right to cry. That was my job. And she had no right to tell me Case was autistic. Because deep down inside I already knew that.

I have met two versions of my son. I miss the first one. I miss him every single day. He was the sun. Yellow and bright with a smile that split your heart right open because it was so joyful.

My second Case still has that smile. It hides behind a cloud more than it should. But when it comes out ... I think those moments are the ones that just reach inside me and grab every organ and squeeze them and make my chest tight and everything stop for a moment because nothing means more to me than seeing him genuinely happy. Knowing he can be. Praying we can keep him that way.

I wonder sometimes what First Case would be doing these days. Would he be in first grade with a little bit of homework every night and karate classes on Wednesdays? Would he watch movies on Netflix with his family on Friday nights and tell me about his day if I asked? What would his bedroom look like? He can't have anything in his room presently because he throws objects when he's angry. He has a bed and two bean bag chairs with no pictures on the walls because he throws those, too. There's not even a lamp. Would First Case have picked out football bedding or Lightning McQueen posters for his walls? Would he have an art desk or a drum set in the corner? Does he know what he wants to be when he grows up?

God gave us the Real Case for a reason. I smile just writing that because I know it to be true. But I don't know why I had to meet First Case. I didn't get to say goodbye. I didn't even know he was leaving.

Old Ladies

Luckily for you all I'm gonna keep this one short and even a little sweet.

It's Christmas time, and it's snowing like it's supposed to snow with pretty flakes and no shoveling involved.

The kids are in a good mood and we're hanging out around my mom's beautiful Christmas decorations. I included some pictures with this post, but I really can't do her home justice.

You know how some people are really good at Rubik's cubes, and some people can bake 38 layer cakes with rose petals and glitter and calligraphy, while others are really talented at murder? My mom is the absolute best home decorator that isn't on TLC or HGTV or ID (the only channel she watches). She makes every room she touches a genuine joy to be in. And this time of year is her Super Bowl.

So this is the warmth I'm feeling as I settle onto the living room floor to enjoy the first ever board game I have attempted with my children.

Charly is meticulously setting up Candy Land as Case observes from a distance. He's not sure what to make of this activity, but the colorful candy road on the game board kind of looks like train tracks, so there is the possibility of participation.

We set up our characters at the start line and start picking cards. Within three minutes Charly is flinging herself across the board for no apparent reason and writhing around like she's been tasered. It appears I overestimated her maturity level.

My mom attempts to garner Charly's interest one last time:

Mom: Charly, do you want to watch me and Mommy play Candy Land so you can see how it works?
Case: (Jumping into the conversation out of the blue) LET'S WATCH TWO OLD LADIES!

I immediately packed up the game and googled "Home Botox."

Luckily, Laney got the brunt of their boredom while I was injecting my forehead with bacteria in the bathroom. I included a couple pictures of the torture she endured, too.

Today was actually pretty tame. But as Christmas draws nearer, I get more and more excited about the endless shit show possibilities.

For now, I'm going to head to bed and light my pine glistening snowflake candle infused with elf blood and reindeer shit. Or whatever this Yankee monstrosity is. But I'll set anything festive on fire this time of year, so I'll let you know how it is.

Here's to Christmas decorations and moms and Yankee Candles and little boys with no filter.

Hope everyone is having a good weekend!

It's the little things...like suppositories

I caught Case in my bedroom yesterday wielding a pair of scissors he had scored from my bathroom. As soon as he saw me enter the room he came running up to me. "Oh, HERE YOU GO!" in a delightful yelly sing-song voice. This response indicated destruction. I inspected my room, not finding anything. But I know. I'll find it eventually.

We go downstairs and find Charly attempting to draw on furniture with markers. She has a compulsion. Markers are her crack. Drawing on expensive furniture is how she inhales. Ethan Allen would be her drug den. Seriously, what is wrong with three year olds? They are terrible, terrible people. Were we all like this when we were three? She spends more time in her room than inmates do in their cells. And she doesn't care. When I told her the Elf on the Shelf was gonna put her on Santa's shit list (not my exact words), she said "No he won't. I'm just gonna whisper in his ear when you're not looking and tell him what to say to Santa."

Just like my children, my morning routine sucks. I'm still up with Laney at night. It's a total fog. I hear her on the monitor, I go in her nursery, I grab something that might be a bottle, might not be, and shove it in her mouth. I wake up in the morning and can't remember if I was in there 1x, 2x, 3x? It's a total blur. So I stumble around and put things  over my head that might be clothes, and paint my eyes with eyeliner or a Sharpie. Whatever I can find in my purse. And so this morning I'm nearing the end of my routine with the last part involving the all-important curling iron. Otherwise I look like a face with a broom behind it. So I hit the "on" button and nothing happens. That's odd. I look at the outlet. It's plugged in. I hit the reset button. Nothing happens. I look down at the cord. Oh. That's what Case was doing with the scissors. It's cut in half. And wouldn't you know -- today's the day I'm supposed to be on TV. Because of course it is. Thank you, Case. It's always something. Always a little thing I'm not expecting. But this goes for all of us, right? Whether we have kids, or don't, whether they're "neurotypical" (that's "normal" in the autism world), or not.

But good news today -- even though it came out of something bad. Case informed his teacher that his "belly hurt" this morning. Not a big deal for most people, but Case has never really communicated when he doesn't feel well. It's so hard getting him to say what hurts, and so frustrating as a parent because all you want to do is make him feel better but you have no idea where to start. So he's developing some communication tools. And he was in fact sick, and he had to come home from school. Which is how I ended up inserting a suppository into his rectum this evening. First time I've ever had that honor. And he insisted on watching Netflix while we did this ("Netflix and Pill). So I've got a blue rubber glove on, and this is all really weird, and I've got him bent over next to the Christmas tree, so that's a nice accessory to this horror show. And Charly is hovering over me trying to watch all this, and she's jumping up and down in a red sparkly dress asking how much this will hurt Case. But he handles it so well. I was expecting some kind of exorcism response. But no. Charly, however, became belligerent after I informed her she could not have a suppository, too. What is wrong with these three year olds?

These little unexpected things make up every day. And they are so damn funny. I get asked all the time how I deal with all this, and I always shudder at that question because I don't want anyone to think that Case has made life hard. Our life is no more difficult than most of yours. Case just made it different. We adapt to him, and it's OK. We all have something, right? We all have big things. And little things. I used to get so unbelievably stressed out by everything. I didn't adapt. I sucked as a mom because I couldn't go with the flow. I wasn't present. I spent all my time thinking about how I could make things better. Now, I celebrate the curling iron cord. I am ecstatic over a suppository situation going well. No more expectations. Just realizations. Does that make sense?

Beauty in motion

I took Case to see Legendary Santa for a work event tonight. I was driving down W. Broad street playing PacMan with the cones and squinting through the windshield because I can't see a goddamn thing at night. Can anyone actually see well after 6PM these days? I swear we're all so lucky there aren't more car accidents because no one seems to know what the hell they're doing once the sun goes down. Lanes no longer exist. My car's personal space is non-existent. Merging is a life or death situation. Anyway, I'll stop ranting. I'm driving in the car thinking about how this is gonna go, planning the evening, devising the tactics I'll use once things go south. I have a package of toy horses in the car right now. He doesn't know about it, but it's my emergency pony pack. Case is really into horses these days and these plastic foals could end up saving lives. I've determined what I'll say once Case gets near Santa and how I'll inform them that Case won't answer the question "What do you want for Christmas?" We're just here for the picture and a little adventure.

And here's why it is so awesome to take a chance sometimes. The line for Santa was extremely long. No way Case could endure 45 minutes in a crowded room waiting patiently. I mean, how many "normal" kids could do that? So, we threw seeing Santa out the window. And you know what? The coolest thing happened. There was a really pretty carousel running toward the back of the museum. And what is Case really into these days? Horses. And can you imagine his face when he saw a giant circle of colorful horses that glide up and down alongside soft music and lighting?

You don't have to imagine. There's the video. It was so sweet. And he's so beautiful and his face and smile grab my heart and I want everything to be OK for him because he's absolutely wonderful and weird and pure. All our kids are.

We ended the evening with an exuberant Case yelling "HAPPY HALLOWEEN!!!" at everyone we passed on the way to the parking lot. Oh, and he called my boss's wife "Sugar." "Hi Sugar!" It was charming. He's charming.

Goodnight eveyone

I have to go see a man about a horse

I showed up at the house today to decorate the old Christmas tree. (Matt and I are divorced, if you weren't aware. But I wanted to mention this because otherwise half of what I write might not make sense. It's really OK, though. We are putting the kids first, spending all our weekends together with them, and getting along like mature adults should. Which is amazing for us).

Anyway, I was excited to get the kids involved now that Charly's getting older and Case is starting to understand more about Santa and some of the traditions. Don't ask me to explain Baby Jesus or Mary and Joseph to him because it would get weird really fast. If I put a manger scene in the house Case would have Baby Jesus tied down on one of his train tracks and he would show no mercy. My feet would start burning as Hell rises up to engulf me in flames. We're just sticking with the tree and presents for the moment.

I was reticent to bring anything breakable along -- in meltdown mode, Case will throw the nearest object. If he's anywhere near that tree, we're f****d. It would be like that scene in the movie "Dodgeball" when the old dude is throwing wrenches. I did buy a metallic tree with colorful ball ornaments. It was cute. I presented it to the kids and placed it on a side table. Case had those ornaments off in two minutes. I thought they were attached very well. But Case proved me wrong. Case had that tree figured out before I even took it out of the bag. He's like that. He's mechanically kinda brilliant. And it's fascinating to watch him when he's focused and tinkering with objects. Case will end up kicking ass in trade school if the horrible, awful system supposedly providing help for ASD kids (autism spectrum disorder) gets its act together and delivers the support he and other kids desperately need. But that's a whole other blog entry.

Communication was tough today. He was fixated on a horse and penguin I know nothing about. This is what the conversation was like all afternoon:

Case: Want to get horse and penguin.
Me: What horse and penguin?
Case: Want to get horse and penguin.
Me: Where are horse and penguin?
Case: Want to go for a ride and get horse and penguin.
Me: We're not going in the car today.
Case: (shrieking) WANT TO GET HORSE AND PENGUIN!
Me: Help mommy decorate the tree.
Case: (stands at front door while boring holes into my head with his heated stare)

I felt terrible. I wish to GOD I knew what he meant/what he wanted. It absolutely sucks. I am so sorry he can't communicate the way I do, and I wish I could communicate the way he does. Sometimes, it's amazing having a conversation with him. It's hilarious. For instance, over Thanksgiving, we had these exchanges:

Case: Want to go see Ron.
Me: Who is Ron?
Case: Who is the bear?

or

Case: Want to go to school
Me: It's nighttime. School is tomorrow. The bus will come in the morning.
Case: Going to school now (puts on backpack and stands at door)
Me: Case, you can see Ms. H tomorrow.
Case: Ms. H is a polar bear.

or

(in the car, Case is in the backseat)

Me: Case, do not hit your sister!
Case: (silence)
Me: Case.
Case: HOT DOG! WHO WANTS A HOT DOG!

Some days he communicates really well. Some days he repeats the same phrase over and over again to the point all your hair is on the floor. And not every day is an adventure. I didn't take him anywhere today so the odds of something insane happening were reduced at least 80%.

But this is a snapshot of the everyday stuff. Please excuse any grammatical/spelling/tense errors. I'm writing the exact words running through my brain, and it's late and I have to get up early and there's an infant just steps away who could wake up at any time. I'll go back and edit these when I have time. So never, probably. Thank you, as always, for reading.

--Ashly

Penguin

The first blog post is called "Penguin."

Why?

Because in the car ride on the way to our first stop on a little (weird) family tacky lights tour this evening, I asked my six-year-old son, Case, how he was doing in the back seat.

He yelled back "Penguin!!"

And so when it came down to what I should name my first blog post, nothing came to mind. No title made sense. Sort of like "penguin."

Raising a six-year-old son with autism is absolutely hilarious. Absolutely exasperating. Absolutely heartbreaking. Absolutely wonderful. Absolutely chaotic.

Example in point -- Tonight. When we're leaving a beautifully lit up holiday home and a total meltdown ensues. Luckily, Case always saves the worst for the largest crowds.

The writhing boy was slung over dad's shoulders, but not before managing to rip off his slip on red Lightning McQueen shoes and launching them across the roped off front yard display which contained approximately eight thousand twinkling polar bears, reindeer, candy canes and some inexplicable rubber duckies. The crowd around us started murmuring, and staring, and laughing.

I immediately thought "OK, I'll come back tomorrow morning and ring their doorbell and recite my usual speech when weird shit happens and retrieve the shoes then."

Luckily, my three-year-old daughter, while a big fat liar, is also an adult sometimes and processed the situation immediately. She darted across the Christmas land mine yard and retrieved the shoes without fanfare.

We did our usual getaway car exit with everyone running down the driveway and flinging themselves into the vehicle while fumbling with keys, coats, phones, seat belts, car seats, baby bottles, pills, you name it. Usually we forget something like a full coffee cup on the car roof, or a purse in the grass. But tonight it was dark so I don't know what we lost. Other than our dignity. And almost some shoes.

This is just a taste of the circus. I'm going to spend some time updating the blog with things I have written in the past, along with things I have been saving for the right time. Thank you for reading this first entry. This story is just the norm. I kind of love it.

-Ashly