Things I Can Do

Each summer, we send our son to sleep-away camp while we rent a house on the Eastern Shore of Maryland. Here are things I can do while my 17 year-old with autism is at sleep-away camp:

Send my typically-developing 14-year-old son and husband off to golf with my parents while I stay and bike along the postcard-perfect shore, startling a fox into dropping its breakfast of a small, black bird as he darts into the tall grass.

Pedaling and pedaling and pedaling as I think about my brother-in-law, who was killed by a drunk driver as he cycled the bike he built for himself, with his own hands. Wanting to remember him because I’m terrified of forgetting him but exhausted from the sadness, the grieving, the complete enormity of the loss. I pedal until I can’t tell if the wet on my cheeks is from the sprinkling of raindrops or my tears.

Read The Glass Castle, thinking to myself that I’ve read it before—I feel like I’ve read it before--but not wanting to stop since it’s captivating and I’m not really sure if I’ve read it before. It’s worth reading twice, anyway. Most good books are. I put off reading the Lena Dunham book I bought for this trip. I fear there’s too much thinking involved, too much seriousness. Perhaps an unfounded fear, I love her after all, Girls is a tour-de-force and she's so brave, but I’m not brave enough to take the chance. There’s time for that later, I think to myself. Later, for Lena.

Pay attention to—be present with—my typical son who I fear gets the shortest end of a very short stick. A nub, really. Steal glimpses of who he will be as he slowly becomes a man because I have the leisure to really look at him. To really see him. Do you understand what I mean? To see him? Waiting to hear him talk about girls but settling for listening about water erosion instead as he casts another line into the Bay. Later, I guilt him into yet another bike ride with me because each ride--no matter how reluctant--gets him off of his computer. (That computer!) A smidgeon of a victory, each minute off of a screen a triumph of sorts. Sorry, not sorry.

Play Pictionary late into the night with my typical son and my husband and my parents, marveling at our incapacity for even the most rudimentary art skills needed for the game. Admire my ability to draw the outline of a sheep+dog=sheepdog to win that round but exasperated at my ineptness in depicting “outside.” Appreciate the normalcy of it all, the quiet in the other rooms apart from us.

Perch unmoved atop a splintered, weathered wooden bench on the shore of the Chesapeake Bay for 15 uninterrupted minutes, admiring how the last of the sun dances on top of the small waves of the water, nursing a club soda since I’m saving my allotment of wine for dinner. 

I wonder how much the owner paid for all the riprap he needs to hold back the unrelenting lap lap lap of the Bay’s waves. How often they need to repair, to beat back the water and the driftwood the storms deposit on the top of the rocks.

Complete one book, disappointing since I usually finish two on vacation but was sufficiently distracted by the caretaker’s unexpected tirade about how the rental property’s owner wouldn’t give him enough money and is letting this place go so it’s starting to look like a n----r shack and we should come see this other house he takes care of for owners who give him enough money, leaving my mother flabbergasted, me offended, we’re all offended, and my husband red-hot sure-fire pissed. My dad shook his head and pulled at his ear. After the caretaker came back two days later, I also got to calm my husband down after he gave the cantankerous caretaker an earful. He left quickly. The owner apologized. So, you know, just one book this week, although maybe only a half of a book since I’m convinced I really did read The Glass Castle before, so that wouldn’t count.

Sit at a brown-paper-covered octagonal picnic table on the deck of a local seafood place, picking blue crabs covered in Old Bay and dip the magical white meat in a tiny plastic cup of vinegar (or butter, you choose, but I prefer the tart and bite of the vinegar). Watch the sunset dapple the calm water of the Bay, understanding that my typical son professes to love crabs—he can eat three or four, really, he says--but knowing he’ll only eat one and declare himself full and move on to the chicken tenders. See my mom answer her cell phone with spice-covered fingers, then pressing the phone to her ear and the fingers to her forehead as she hears my sister’s boyfriend tell her that she’s gone back to the hospital with complications after the birth of their first child. She’ll be fine, the baby’s fine, my sister’s fine, but I worry. I worry. We’ve had too much loss the past year and a half to be still. At least, for me. I can’t be still. I am always pacing, even if it’s just in my mind. Moving, moving, always moving, restless.

And yet, despite all the restlessness, the pacing, the ruminating, I do find time to sit. To calm. To breathe.

The Look

Cheesecake Factory. The finest restaurant in which Conor has binged and purged.

I'm not truly certain why it happens. I have an inkling. But it does happen. Not every time, not every month, but often enough. We'll go out to eat, and Conor winds up giving back some or much of what he ate.

See, we eat out each Wednesday night. I don't remember how it started, but our routine is to go out to eat on Wednesdays at a rotating list of restaurants. Red Robin, a local spaghetti joint that thankfully closed, Outback Steakhouse, you get the drift.

Listen, I'm certainly not going to complain about not having to cook dinner and do the dishes. And trust me, it's quite an accomplishment to have a child on the spectrum who can go to a restaurant for a meal. Not everyone can say that.

Vomiting at Red Robin? Ok, I get that. Trust me, I get it. Outback Steakhouse? Ok, I can see it. All that G'day Mate and Hallo Sheila! is enough to make me nauseous. But The Cheesecake Factory? The Cheesecake Factory? What's he got against The Cheesecake Factory?

We sit. He gobbles bread and fat pats of butter. We try to limit him, lie to him and tell him that we need all those extra pats of butter we tell him he can't have. We slip them into our pockets, finding the forgotten butter bombs hours later. He slurps down two huge glasses of raspberry lemonade, the kind with the sugar around the rim. The waitress, she keeps bringing them to him without us asking. He inhales handfuls of french fries with ketchup. He shovels bow tie pasta with marinara sauce into his mouth.

We cajole him to slow down, take a breath, take a break, please, you don't need to eat so much. Please, honey, please don't eat so much. Drink slower, don't gulp.

Then he gets The Look. If you're a parent, you know The Look. Hell, if you were in a fraternity, you know The Look.

"Conor," I ask him, rubbing his back gently as he leans forward. "Are you feeling ok? Do you need to go to the restroom?"

"No!" he says. "I don't want to be sick." He wraps his arms around his ample belly.

"You don't look like you feel well, sweetie," I said. "Are you eating too much pasta? That might make your tummy upset, eating too much."

"No!" he replies loudly, his voice raspy with puberty. He rapidly, defiantly shoves the remains of the bow tie pasta into his mouth. He swallows and sits back. "There," he continues, "I finished it."

"Ok, honey. But we're going to go to the bathroom now," I say firmly and stand up.

We walk, him in front, my hand on his back, wending our way through the other diners. He's with me, we have to go into the women's room, at least if he's going to vomit. So I can hold his hair back.

(No, seriously, vomiting requires more, shall we say, hand-holding. He's less independent in this area.)

He heads for the large white sink with the silver sparkling faucet. Grasping the edge of the Corian counter, he belches loudly.

"Conor," I implore quietly, "why don't we try the toilet?"

"Ok," he acquiesces. I'm surprised; he's never agreed before. We brush past an older woman-of-a-certain-age who seems only a bit aghast at the sight of a 15 year old man/child in the women's room. Thankfully, the large wheelchair accessible stall is empty, and I quickly lock the door behind us.

Standing upright, he vomits into the still, clear water, keeping the mess to a minimum. I'm not excited about the prospect of having to wipe up a public toilet, but I do what I can. Years of coping with Conor's bodily fluid output has given me a sad sort of expertise in this area.

I can tell from the, uh, lack of volume that he hasn't cleared out his stomach much at all. To be frank, I doubt this bit of stuff even hit his stomach.

He's done, he announces. He wipes his mouth on the back of his hand. He's ready to go back to the table. He raises his hand for a high-five.

"Wash your hands, sweetie," I say. "Let's go wash your hands."

Write On

“So, today, Conor and I reviewed the new Appropriate vs. Inappropriate Behavior social story,” Paisley, his in-home aid, explained to me at the end of her session. “Tomorrow, Conor and I will review the calendar story, talk about the budget for the week, and I’ll introduce the Back Up Plan story.”

"Oh,” I said, wincing. “I didn’t make the changes to the Back Up Plan story yet.”

Paisley raised an eyebrow. It’s understandable, after all. Her confusion, that is. I had specifically told her I was going into my home office to write her paycheck and make the changes the behaviorist suggested to the social story.

“I got distracted,” I explained hurriedly.

“See, yesterday, when the kids were in camp," I continued, "I cleaned the third floor. Vacuumed, dusted, did the bathroom, the whole she-bang. Except my office. I didn’t have time for that. Why clean my office before I shred the box of documents?" I shrugged. "It makes a total mess. So I wrote your check—I had to write two ‘cause I screwed the first one up—and then I thought—shredding!”

I smiled broadly. Please don't hate me, I silently pleaded. I thrust her paycheck toward her. Maybe that'll help.

She blinked at me. I felt shame.

“It’ll only take a minute, I swear,” I blurted out. “It’s just a few word changes.” Paisley chuckled. 

I blame my husband. It’s his fault, he totally nags me about the shredding.

SHRED, WOMAN, SHRED!

One picture on the entire Internet of a man nagging a woman.
A bjillion pictures of women nagging men.
Seriously?

Ok, not really, it’s not his fault. He doesn't give a rat's fart about shredding. I do, I care about the shredding. O-KAY?

I’m sorry, I’m sorry, it’s just…

IF I HAVE TO PUT TOGETHER ANOTHER SOCIAL STORY FOR CONOR, I WILL RIP MY FUCKING HAIR OUT.

Whew. Well, there you go. Good to have that off my chest. I feel so much better now.

Aaaahhh. That's better.

Carol Gray did an amazing thing when she developed social stories to help communicate ideas, social conventions, and whatnot through these stories. While they have never been effective in directly reducing Conor's behaviors, they are remarkably useful in teaching rules, protocols, expectations, and to describe upcoming events. Which, when wrapped up in a nice, neat ball, help minimize upsets. Mostly. Sometimes. On occasion.

Some of Conor's social stories were written by behaviorists on the unit. Others were written by Paisley, a portion of them are by me, one or two by the new behaviorist. The majority are collaborations. Some are long (Conor whines about them, he doesn't like reading); others are brief.

Conor has 17 social stories in heavy rotation right now. There have been a few more, but they have fallen by the wayside. Retired, if you will. He likes to choose the color of the social story folder, and he has even helped me write one called "Buzz and Woody help Conor review his budget"--

We wrote this one together after the Aquarium outing snafu,
plagued by my rookie mistakes.

We have them for EVERYTHING it feels like. Conor, don't pick your nose. Don't freak out about the electricity going out. Here's when we go to the library and how that all works. Managing your money. Going on vacation with him. Going on vacation without him. Stuff like that.

Here's why you can't eat ice cream all day, every day, Conor--

Hint: A minute on the lips...

Why Conor has to buy clothes from the men's section now. No, I'm not kidding, Paisley had to write a story about this. Conor really doesn't like the idea of growing up, but that's for another post. (Quite honestly, I think he's just chapped that he has to pay higher prices now. It puts a big crimp in his spending. Welcome to the real world, babe. Growing up IS a bitch sometimes.)

I finally did put the finishing touches on the Back Up Plan social story. See, he really doesn't like it when Mother Nature messes with his mini-golf outings. Or his hikes. Or swimming. You get the picture.

So, one of his behaviorists came up with a protocol for what to do when he has chosen an outdoor outing for his reinforcer for good behavior, and Mother Nature pisses rains all over it.

It was a collaboration. One of his behaviorists came up with the protocol, the other behaviorist added some things to it, Paisley wrote the text during one of Conor's infamous naps, and I selected The Bee Movie as the theme, found the pictures on the Internet, and threw it all into PowerPoint with a few of my own touches. Then we sent it around for edits, tweaked the protocol again once more (two back up choices, not just one), and...

voilà! 

Sorry for the quick transition between slides. You'll have to pause it if you want to read the text because I have finished my shredding and have moved on to my filing. Don't be jealous; I can't help that I live the glamorous life over here.

The Rookie

“I feel sorry for you, Mom,” said Aidan, my 11 year-old typical son. He shook his head, a rueful smile passing across his face.

“Feel sorry for me? Why do you feel sorry for me?“ I asked as I tossed items around our cubby room. How do we have so much STUFF?!

“Having to deal with Conor all the time,” he continued. “I feel sorry for you.”

“Don’t feel sorry for me,“ I said sharply. A little too sharply, I suppose. Forgive me. “Don’t feel sorry for me, Aidan. Conor is my son.”

“And Dad,” he continued, as if he hadn't heard me at all. “Dad just can’t ever get a break. I feel sorry for him, too.”

“Yes,” I sighed, resigned now. “I suppose that’s true.” It’s true, it is. I can leave Conor with my husband, he can handle it alone if Conor has a tantrum. Me, not so much.

I stared at the back of Aidan’s head as he walked away, his copper hair reflecting the sunlight from the window. How can he be just 11 years old?

God knows, it had been a tough week with Conor. For all of us. I won't admit to self-pity, but I will cop to practically buckling under the strain.

See, one Sunday, Conor decided to buy himself some shorts from his beloved Black Dog online store. I let him, it fit within his budget and protocol, after all, and it IS his money. Problem was, the next day his earned outing was to the National Aquarium, downtown. Silly me, I thought the outing was about visiting the sharks, the fish, a stingray or two. Ride the elevator, the walking escalators, carefully spin through the revolving door. Get some bagels after.

 

Rookie mistake #1. Always remember: it’s about the shopping. 

I should know better. In Conor reality, the outing was about the gift shop. T-shirts were $28.00, you see, and he simply did not have enough money left in his budget after buying those coveted Black Dog shorts. Oh, there was plenty to buy for less coin, but he had his heart set on that t-shirt. He has no need for the Aquarium shot glass, you see. (Me, of course, I could put that to good use.)

Conor darted wildly through the gift shop; stomping, screaming, crying, red-faced. I’ll spare you the details; it was all very public. My husband and Brian, Conor’s 1:1 in-home aid that day, muscled him out. Aidan hung his head.

Later, after a half-hearted speed tour of the Aquarium, Aidan and I took a cab home. The cabbie overcharged us. I didn’t care. I just wanted home.

Rookie mistake #2. Always take two cars, even if it's just the four of us. 

Conor didn’t have a tantrum that day. He came close. He didn’t have a tantrum the next day. He came close. Nothing made him happy. You get the picture. He rode the edge hard, pushing the limit each day. Chapped, I would say, with no salve. He would not be soothed.

Dig nails in, pinch,
pull, then twist.
Quite effective.

Finally, a week later, it happened. He threw a basketball into the yard. I told him to put it back in the rack with the others. He refused. I looked at his other in-home aid, Paisley.

“Am I doing something wrong?” I asked her.

She shrugged. He'd been close to the edge so often that week, it was hard to know what was going on with him. Since I had told him to do it, I had to follow the behavioral protocol. Three steps—repeat the demand, model the behavior, hand-over-hand. He did it.

Then he blew. It was unexpected, and ugly. Difficult. He’s getting bigger, you know. At 14 years-old, he already outweighs me by fifteen pounds. I wasn’t much help to Paisley, I'm embarrassed to say. The next day we agreed; we were both very sore.

Rookie mistake #3. Don’t tell him to do something unless you’re prepared to follow through. 

Maybe someday I'll stop making all these rookie mistakes. God knows I've had enough practice. We've been at this for twelve years now, so clearly I'm not a quick learner. I don't know, it seems like there's so much to keep track of, so much to do that time gets squashed, and he's just so hard to get a grasp on some days. I mean, I can't find the manual to Conor anywhere.

What I do know is this. We asked Conor's psychiatrist to increase his medication. (While it's not unusual for him to get worked up, being that worked up for so many consecutive days is unusual.) We tweaked his behavior protocol a smidge as well, and I'm going to start working out more often.

Exercise. Sigh. Sure I will.  Right after I have this glass of wine.

See?  Easy-peasy. Two birds with one stone.
Plus, you can drink red wine AND it helps your muscles!
It says so right here, so it must be true.

File This, Baby.

Yeah, so, it's like this. About a year ago, I decided that if I couldn't hold down a j.o.b. due to the demands of caring for Conor, I would make like he would be my job. God knows there's enough work here for a full-time position, what with all the protocols and social stories and doctor visits and therapists and dietary shenanigans and whatnot Conor needs. Not to mention all the time wasted dealing with tantrums. I figured doing this would give me some emotional distance while also helping me deal with my bitterness at having to give up a career. Not that I had much of one to give up, seeing as I popped him out when I was but a child. (What? 29 years old is still a child, right?)

No sweat, boss. Want that alphabetical or chronological?

To be completely honest, though, I'm not really great at much except filing. Look, I don't mean to brag here, but I file like a beast, whether I'm punching paper for a 3-ring binder or placing the papers loose in a manila folder. 

Sha-ZAM, alphabetize that, suck-ah!

(I'm really terrible at the 2-hole puncher, though, so no doctor's office would ever hire me. Those things are extremely complicated. I blame the math involved.) 

And scanning? Don't even get me started on my whip-smart scanning ability. A broken automated document feeder doesn't even slow me down. True story.

I can always attempt laminating, but it's such a niche market that it's quite competitive. You have to have, like, a PhD in Laminating before anyone will even LOOK at your resume. (I'm self-taught, so no luck there.)

Sometimes I can put words together to form sentences people read (thanks, Mom and Dad, for reading, you're the best), but any editor would be wincing right now what with my sentence fragments, coarse language, and using terms like 'what with'. Additionally, I have a problem with rampant overuse of the comma. I know, I don't know why, it's like I'm a comma ADDICT.  My poor parents, when they read what I write, they must sound like they've just run a marathon what with all the pausing of breath and the stopping and starting and stuff.

('What with' is my new favorite phrase, I've just decided, that. Comma.)

Anyhoo, what with the rise of the Internet and the popularity of electronic documents and all, the job prospects of a comma addict that can file actual made-from-trees paper is seriously in decline. I know, right?! Progress sucks.

So, in order to fill all my (cough) spare time whilst Conor wiles away the hours in school, I decided that I would start locking myself in my home office and write social stories about not picking your nose (not you you, Conor, he picks his nose), and call doctors for appointments and results, and email behaviorists their (mostly completed) data sheets back, and manage his calendar, and whatnot. I go to the pharmacy a lot too. For both of us.

Hey baby, how much for your accountant calculator?
I'll give you whatever, as long as you love me.

(Conor has a remarkably complicated calendar, but that's for a later post. Suffice to say that we use it to help control his behavior and to manage his obsessive interests and desire to be out amongst the people.

He's just like Justin Beiber that way, enjoying time with the common man. And buying stuff.)

Right now, for example, I have to type up a chart that outlines for Conor the following things:

1.     Things That Conor Can Control
2.     Things That An Adult Controls
3.     Things That No One Can Control

(Yeah, we're having issues with control. OBVIOUSLY.)

I know! So very exciting!Thankfully, Conor's in-home aid, Paisley, put the actual list together when he was napping the other day, so I don't have to actually use my brain. I just type it up, print it out, and... FILE IT! Sha-ZAM!

Oh, wait, no, I actually have to go over the list with Conor. Might have to delegate that, not my area of expertise.

Hmmmm, what else is there? Oh, prepare for IEP meetings, manage in-home behavioral aids (they expect me to know things and train them and, you know, pay them), marathon conference calls and meetings with the behaviorist, and...

I know! In my spare time, I take care of things for my other kid. (Whew, almost forgot about him for a minute. He's so quiet.)

Despite the fact that there's no pay, no benefits, and the work environment is fairly isolating, there are definite perks to treating all my slaving away on providing supports for Conor as my job. The biggest one being that I totally get to sleep with my hot boss. He plays "boss man", and I get to play "secretary" and help him with his, um, filing.

This is a REALLY old picture. Sometimes I make him
put on a suit and pretend to be Don Draper.

So, yeah, it's like that.

What's That Smell?

“What’s that smell?” Conor asked, slamming into the kitchen one afternoon.

Quickly, I glanced at Conor’s in-home aid. Brian arrived just a few minutes before Conor came home from his earned outing with his dad, and he and I were seated at the kitchen table discussing his schedule.

Brian stared back at me with a slightly alarmed look on his face.

“Um, what smell, Conor?” I replied, surprised. It wasn’t me, I swear. Cross my heart and hope to die. I didn’t even smell anything. Truth.

“That smell, what’s that smell?” he repeated emphatically, pointing at me.

I glanced again at Brian. 

“Uh, I don’t smell anything, Conor, but whatever you smell, it wasn’t me,” I protested, pointing at Brian.

“Hey, ho, it wasn’t me,” said Brian with a grin, throwing his hands up in the air. “I’m not taking the rap for that.”

“Maybe it was Linus,” I offered. Thank God we have a dog. Seriously, I think that’s half the reason people get dogs, to blame farts on them.

“Why did Linus fart?” Conor continued. “Why does Linus gots gas?”

“I don’t know, Conor,” I said. I got up to let the dog outside. “Let’s move on.” Poor Linus, I could tell he resented getting the blame for the nonexistent smell. It’s tough, a dog’s life.

Time was, we could fart with abandon around Conor. Throw caution to the wind, as it were. Not that I actually do that, no, I don’t do that. But if I did fart (though I never do), he certainly wasn’t going to tell anyone.

Quite frankly, with his own significant gastro-intestinal issues, Conor certainly shouldn’t be pointing fingers at anyone, being Farty McFarty Pants himself most of the time. Still, seeing as he was wrapped up in his head, in his mind, with his obsessions and sensory overloads and with limited expressive language, and whatnot, a person could let a big one rip and mum’s the word.

I mean, not that I would ever do that, but if I wanted to, I could. Conor certainly wasn’t going to go over his friend’s house and laugh about how his mom ripped a shotgun blast the day before. That would require friends and language and the sort.

(Again, I’m not saying I ever do that, just that if I did, hypothetically, Conor wouldn’t say anything about it.)

But over the past year, thanks to a pop in expressive language and increased relatedness, our son has become the Fart Police. A living, breathing Fart Alert if you will. 

I mean, for the love of Pete, he will not let one little SBD waft past his button-nose nostrils without crowing “What’s that smell? Who farted?”

I did, Conor, and it smells like roses, I want to say. (Not that I ever do that, but if I did, it would. Smell like roses, that is.)

Oh, but it gets better! Not only does Conor now proclaim it to everyone within earshot (not that I would ever fart in front of people, no, I don’t do that. Fart that is. Ever.) 

No, now he has to interrogate you on the gas you passed.

“Who farted? Daddy, who farted?” Conor crowed one evening.

“I did, Conor,” my husband sighed. It was late, and he was weary from travelling home from Miami that day.

“Why did Daddy fart?” Conor asked, pointing his finger at my husband. “Why?”

“Must’ve been that Cuban sandwich I ate in the Miami airport for lunch,” my husband laughed wryly. “It’s not sitting so well, thanks.”

“Why did Daddy eat a Cuban sandwich?” Conor continued his interrogation.

My husband sighed heavily, shaking his head.

“I’m asking myself the same thing, Conor. The same thing.”

Bada Boom

Aidan, my 10 year-old typical kid, and I jetted down to Duck Key, Florida, this past week for a little respite on his Spring Break. Friends of ours spend a week at a resort there, and I just latch on to their vacation plans like a leech each year.

(Hey, what can I say? They're of Irish descent, and Aidan has red hair and freckles.  I just push him in the door of their rental house and figure they'll never notice they've got a fifth kid at the beach. I got to read two books before they even realized he was there.)

Duck Key is far to go for just four days, but I love these mini-vacations. It gives me enough time to disconnect from all the demands of parenting Conor and really enjoy concentrated time with Aidan.

After a two hour flight to Miami, we had a 100 mile commute to the Florida Keys. This gave us much needed quality time.

"Mom, why does that sign say 'Gentleman's Club' but has a picture of a lady on it?" Aidan inquired, looking at me rather quizzically.

((Who the hell taught that kid to read?!?))

"Because it's a place where men go to look at naked ladies dance around," I replied. Keep your eyes on the road, Alisa, eyes on the road.

I glanced at him quickly. Damn. Aidan, sitting in the passenger seat next to me, screwed his face up like he just ate a lemon. "I don't think I'd like that," he continued. He's currently mortified by anyone's nakedness, including his own.

"Wait until you're older.  I'm bettin' you change your mind," I countered.

"Does Dad go to those places?" he continued.

((Who the hell taught this kid to talk?!? And why isn't he playing on his iPhone?))

"Only with skanky clients twenty-five years ago," I replied.

No! Not really.  That's just what I thought.  What I really said was--

"You'll have to have that discussion with your father."

(Programming note:  my husband does not frequent strip clubs. What can I say?
I was like a deer in the headlights. I wanted to lob that hot one in my husband's side of the court tout-de-suite!)

 

See?  Quality time.

("The answer is NO!, Alisa," my friend laughed when I arrived and told her the story about the Gentleman's Club questions. "Just...No!" Damn, I always get the answers wrong to word problems.)

Bwa ha ha ha ha!  Just say no!

Getting Conor prepared for the disappearance of his mom and brother for four days took some finagling. I made sure we went during school days so his schedule remained structured. (My boys are in two separate school systems, so they have totally separate spring breaks. It works quite well for us.) I made sure all Conor's favorite foods were stocked up in the house so my husband wasn't caught off guard by a lack of inventory.  I forbade all of Conor's aids, therapists, and school personnel from getting sick or having a car breakdown for that week or otherwise having a life.

Ok, ok, I forgot to leave the check for Conor's art therapist but she was cool with it. She said she might come back.  Maybe.

It doesn't matter.  Conor wound up having a tantrum the day before, threw up the morning we left, and missed school that first day.

Sorry, honey, gotta go!  Don't want to miss my flight!

 



Bye! Love you!  Sorry about the vomit! Mwah!

Here's a copy of the social story I put together for Conor. (I saved the PowerPoint file as a movie, so I apologize for any technical issues. I'm pretty hopeless at these things.) I really emphasized staying on Level Three during my absence. He still screws up his pronouns so writing things in his voice--in a way he can understand things--can be tricky.



The day after Aidan and I returned from our respite, Conor had another tantrum, this time at school. Looks like we were back in the thick of things.

That's ok, though.  Aidan's back in school (finally! my God, fourteen days is forever) and preparing for the highlight of his fourth grade year--the PUBERTY and SEXUALITY unit. The way I see it, our little trip past the Gentleman's Club was a great start to his learning all about human sexuality, reproduction, and character development. I'm just a little ahead of the game. You know, because of all of our quality time.

Bada boom, bada bing.

You Might Think It's Funny, But It's Snot

You can only wear white at Wimbledon, but you can blow
your snot onto the courts. Provided, of course, that it's white.

There were clues that Conor wasn't feeling too well. That maybe he was coming down with a little somethin'. The snuffling. The dry throat. Wiping his nose on every blanket and dish towel he could get his schnoz on.

Or the fact that he was literally blowing his nose on the back of his hand and fingers. Yeah, that.  Some clues. (I knew I should have gone to med school. I am all over this.)

Conor has a cold. And he would like someone to take the boogers out of his nose. And how, you may ask, did I sleuth that out?

Maybe it's because HE SCREAMED IT AT ME EVERY MINUTE OF THE DAY.

"CONOR DOESN'T WANT A STUFFY NOSE!  CONOR WANTS THE BOOGERS TO COME OUT OF HIS NOSE! TAKE THE BUG OUT!  TAKE THE GERM OUT OF MY NOSE! MOM MOM MOM I NEED TO GO TO THE DOCTOR! I NEED MORE MEDICINE."

All. Day. Long.

We sent him to school on Wednesday because he had an early-dismissal. (Every Wednesday is early dismissal.) So it was only a few hours. Plus, it was just a little head cold and not a bad one at that. No fever. Barely a cough. Just some congestion and a really bad attitude. However, we sort of got the impression, shall we say, that school personnel thought he should have been kept at home to recuperate.(Recuperate=torturing his mother rather than his 1:1s and teachers.)

And so, on Thursday, we found ourselves at home with a Conor chock-a-block full of snot.

(Hey, that rhymes. ♫chock-a-block-full-of-snot♫. Nice little ditty.)
During every waking moment, he would look intently in our eyes, and entreat us to TAKE THE BOOGERS OUT OF CONOR'S NOSE! MOM!  CONOR DOESN'T WANT TO BE SICK ANYMORE. TAKE THE SNOT OUT!"

Oh, wait, no, I got it myself.

At one point, I was so crazed from his yelling at me that I desperately suggested a walk to our local grocery store. I guess I figured that the fresh air and the change of scenery would distract him for a bit.

Well, the only thing worse than having your 14 year-old yelling at you nonstop is to have him yelling at you nonstop IN PUBLIC.

At one point on our walk, Conor yelped, "Conor's going to do ring-around-the-rosie on the street sign that says Indian Lane and THEN Mommy will help Conor get the boogers out."  And he did it, like a wacky, weird little voodoo song-and-dance routine. My husband and I just stared.  When he finished, I grabbed his hand and we continued walking like nothing ever happened.

♫♫♫♫♫Not happening, not happening, la-di-da-di-da-da.♫♫♫♫

A quick public service announcement: Yelling at your child to STOP YELLING AT ME! is not an approved behavioral intervention for children with autism, Tourettes, and a cold.  It does, however, prove I'm not a cyborg.

But if I WAS a cyborg, I would be a sexy one.
Because, why not?  Plus, I really dig those shoes.

I'm only human.  And a sick Conor is an exhausting Conor. (Well, more exhausting than he is on a usual day.) I haven't been this tired since his brother was a newborn.  It's probably because I wound up sleeping in his bed for three nights straight.  He asked me to, and this way, I can give him the Tylenol Cold + Sinus immediately upon his waking in the middle of the night.

Open mouth. Pop pills. Sip of water. Go back to sleep. (And that was just me.) No, not going back to sleep for a bit? Gonna be awake for a few more hours? Ok. Sigh.

I pulled out all the stops. The Afrin. The Tylenol Cold+Sinus. The Vicks VapoRub. (Yeah, I slathered that everywhere. I practically gave the kid a bath in it.)  The warm mist humidifier with the generic VapoSteam liquid stuff in the little cup. I tell you, I had that thing turned so far up that it was practically raining in his bedroom.

The only thing I didn't try was that blue bulb thingy they give you when you have a newborn. You know, to suck the snot out of their nose? (Damn, why didn't I think of that?) Thankfully, the cold didn't last very long, at least not the worst of it.  He went to school on Friday and is back on track with his activities. Now we're busy slathering balm on his poor chapped lips and nose. You know how that is, when you blow your nose too much and then the decongestant dries your lips out.

"Mom?" he asked me softly on Thursday night before bed. "Mom? Conor wants the boogers out of my nose."

I know, honey, I replied. I know.

All I know, Conor, is that you can pick your friends, and you can pick your nose but your mom sure as hell ain't picking your nose for you. Sorry, buddy.

Not Tonight, Honey.

Conor's already on to Easter.
This kit he chose had sequins in them.
So very razzle dazzle.
I think they look like colorful little nips.

Last Saturday night, my husband and I lay spooning after a night of long, slow, passionate lovemaking.

"I'm glad we're finished with the long holiday season," he whispered sweetly to me in my ear. "I feel like we can finally take a breath from Conor's holiday madness."

I kid you, I'm kidding, that's totally not true.

Well, my husband DID say that, but he was practically passed out on the other side of our king-size bed. I was barely awake myself, having collapsed on my own pillow 20 seconds before.

"Mmmmhmmmuhhuhpffftmumble," I think I said in reply. We had just capped the long holiday season with Conor's 14th birthday party that day and we were toast. Done. Finished. Exhausted. So exhausted. No, really, not-tonight-honey-don't-you-dare-touch-me exhausted.

It's true, though, what my husband said. Every year, on September 1st, it's as if a starter pistol goes off in my little guy's brain, and he begins to obsess about the upcoming holiday schedule.

And... we're off!

Halloween!

Thanksgiving!

Mommy's Birthday!
(Hey, it's a holiday, at least in Conor's mind. I'm certainly not arguing.)

CHRISTMAS!

New Year's Eve!

Valentine's Day!

Conor's Birthday!!!!!!!!!!!!!!  

(Conor's birthday is February 14th. I never have to buy my husband a Valentine's present again, baby. Twelve hours of labor and three hours of pushing his ginormous spawn out of my hoo-ha is enough of a present for one Hallmark holiday IMHO. I figure I'm good until at least 2021.)

Wait, what was I talking about again? So distracted... oh, right.

On September 1st, that imaginary starter pistol goes off, and Conor becomes frenzied, obsessed, demanding, persistently so.  He practically races from holiday to holiday, breathless with anticipation and anxiety. One holiday isn't over before he's asking about the next one.

"You want to be a doctor, when's Conor going to dress up for Halloween?  

When's Conor going trick-or-treating?  

Want Conor to go to the Gerkin's house for Halloween? 

When will we celebrate Mommy's birthday? 

What time will we go to Nanny's house for Thanksgiving?

When will we go to Grandma's house at Christmastime? Can Conor

choose his outings for December 28th today?

It's Conor's birthday coming up, can Conor go to Amazing Glaze for his birthday party, with six friends and Aidan and paint pottery for your birthday?"

These aren't unreasonable questions, really, it's not that. It's just hard to answer them all in five minutes at 6:30am on September 1st. I haven't even figured out what I'm cooking for dinner that night! 

And he interrogates you like an FBI agent until you give him an answer.  It's torture. He'll ratchet up the intensity of his questioning and his perserveration until you're ready to say anything.

Ok, ok, I'll admit it!  I was on the grassy knoll 

with Lee Harvey Oswald in 1963! 

I wasn't born yet, but I was there! Just stop asking me!

And the constant wanting, it just never stops. Wanting to buy and aquire, his rampant attempts at accumulating things and maybe giving them away.  It's like he's a Kardashian or something. (Except for the giving away part.)

What do you mean you're not going to
buy Conor anything he wants?
Don't you know it's the holiday season?

Buy, buy, buy...I want, I want, I want!

Conor wants to do this Conor wants to do that when is Conor going here when is Conor going there when can Conor see this when can Conor see that Conor wants to buy Mommy a present Conor wants to buy Nanny a present Conor wants to buy everyone on the planet a present when when when when when?!!

UGH! It's enough to drive a woman to drink.

We do our best to manage his behavior.  Otherwise, he'd devolve into a whirling dervish of anxiety. (Sometimes still does, despite our efforts.)


He has a budget and a budget rules book to live by.

He has a calendar of when activities will happen and where, when school is in and when school is out.

He has social stories out the whazoo about this event and that event. And, this year, a special budget just to buy Christmas gifts for his immediate family only.  (And Linus the dog, we buy the dog Christmas gifts.  Don't judge, he's family.)

Sorry, cousins. He's got, like, a bjillion of
those so they didn't make the "approved" list.

I plan everything well in advance (as much as I possibly can, anyway). And, of course, there's his Levels protocol.

It's not that so much of this is inappropriate, these questions and the desire to purchase items and to travel and see our family and do fun things. I want to do all those things, too. Who doesn't?

It's the near-constant bubbling of the wanting, the questioning, the desiring, the anxiety, the constant perseverations, and the need for control. It's the frantic race from holiday to holiday, from activity to activity without a breath that is so wearing.  Each and every activity, holiday, vacation, and community outing takes so much work and effort on everyone to make it successful.

It's almost as if Conor's a bottle of soda.  Shake it up a little, and it'll fizz. Shake it up a lot, and it'll pour over.  Add a Mentos candy and watch him explode!

So, yeah, it's exhausting. It takes an incredible amount of work to keep Conor on the nice and even, and sometimes even that's not enough to keep him from exploding. And cleaning up that mess?  Not fun.  Not fun at all.

All I can tell ya is that we have six weeks until the Easter holiday. My poor husband may not get laid until April. Good thing Easter's early this year.

Check out this very cool video. I can't wait to show it to my kids. Fun summer project?

Stick A Needle In Me

I haven't felt much like writing these days. A sort of general malaise has me by the throat. I just can't seem to shake it off.

A few years back, when I was very sick, I did a series of acupuncture treatments.

So relaxing.  No, really.

During our discussions (you know, before she stuck needles all over my body), my acupuncturist/therapist/platonic girl crush determined that my least favorite time of year was actually NOT what she called "true winter". (Usually late November, December, January in Maryland.)

Rather, it was what she called the rising spring--February, March, into April--that really bothered me.  As I thought about it, it makes sense.

True spring brings flowers, longer days, and a little warmth here and there.  We don't have to crank up the space heaters or the fireplace as high as before, and Paisley (Conor's in-home aid) and I can take him hiking or for a long walk.

The summer, hard as it is with a less concrete schedule for Conor, at least brings with it sunshine, margaritas, boat rides, and flip flops. (Did I mention margaritas?)

Crisp autumn nights bring beer, slow-cooker meals, football games, and school.

SCHOOL ROCKS!!

Google "male cheerleader" and this is what comes up.
Um, yay school?

Google just "cheerleader" and this is what you get. Men suck.
FYI, this is what my acupuncturist looked like,
but she wore regular clothes.

And true winter?  Well, at least we have school (see above) if it doesn't snow, Thanksgiving, my birthday and Christmas, so I'm usually awash in guilt-free shopping and presents.  So I've got that going for me.

Knowing this is a tough time of year helps minimize my freak-outs. I can increase my intake of red wine, ramp up the amount of retail therapy at Target, and begin to obsess over our summer "vacation" plans. You know, self-care.

Hey, if it's good enough for Britney Spears, it's good enough for me.

It's quite simple, really. Rising spring is the perfect storm of exhaustion from the Christmas holidays and travel with autism, being cooped up in the house too long with autism, traveling with autism for spring break, and preparing for the upcoming summer with autism.

And summer's coming. School will be ending. People will be online posting about how happy they are school has ended, they'll upload pictures of their beach houses and how they slept until 10am everyday, picnics, sunbathing at the pool, a sort of endless nights bonanza. (No more homework! No more lunches to pack!)

Oh, we try to do those things, too. Boat rides with my dad, a trip to the beach to see my in-laws, summer day camp.  (Forget sleeping in. That'll never happen.)

But what people don't see is what's behind our pictures.  How hard it is to make each outing successful. What the toll of a topsy-turvy schedule takes on Conor and my family. Everyone tells us that kids with autism need routine to succeed, and then for months every year, we're left to fend for ourselves.

Last summer, we tried to take a "vacation" twice.  Both times, we cut the visit short due to severe tantrums and fled with our tails between our legs. Quite literally into the night. I didn't write about it because, honestly, I didn't know how.

"Conor ruins another vacation," Aidan cried in the backseat of the car.

Well, can't argue about that.

See?  See?  I'm already getting all worked up about it.  Just the memory.

Sigh.

I have to say, sometimes anticipating the events is more nerve-wracking than actually doing them.  At least then I can put my head down and push through it. Like a linebacker.

Bring it on, baby.  BRING IT! I've spent all rising spring getting ready.

So, each rising spring, I busy myself trying to prepare, mentally, emotionally, financially, logistically.

My husband might describe my behavior as "obsessing" rather than "preparing".  Well, pffffttt, I say to that.

What will we do differently this summer?  The same? How can I help my family have a less stressful summer? I'll write more social stories, better social stories. More medication, different medication, less medication.  More behaviorist support, less behaviorist support.  Less vacation, shorter vacation, different vacation. More red wine, better red wine. Chocolate!  I'll eat more chocolate!

Trying to put the pieces into place for my son's summer, it can be stressful.  Not to mention painful, what with all the bikini waxing and whatnot summer brings with it. (For me, not Conor.  He doesn't wax.)

I think it's time to go back to the acupuncturist.  Maybe a more intensive treatment this time of year, though.

Yeah, that should do it.

Problem, First World It Is

Over the past few months, Conor has developed an obsession with the navigation system on our cars.  I have no clue how this particular obsession started. I really don't. But when we purchased a new SUV last March, Conor decided that he absolutely had to map every destination to which he journeyed. (We had a nav system in our last car, but he didn't really care about it. Then, bam! New car=new obsession. Go figure.)

It doesn't matter whether it's down the street or to his grandparent's house, to the library or to the beach, it is absolutely required to first look up the address on a smart phone and then input it into the GPS. Red Robin, Outback Steakhouse, the bowling alley, his aunt's house or the mall...no matter that he's been there a bjillion times and can give you the directions himself, ve must put ze address in ze system or else!

Put it in ze GPS system, Fraulein. Schnell.

I'm not kidding, the library is a 15 minute walk from our house, and he still insists on putting the address in the system. (Hey, of course I drive, it's wicked cold out there. I'm a delicate flower, you know.)

School.  He routes the drive to school. 3 miles from our house. He still routes it. It's maddening.

(And yes, he sits in the front seat of the car. Hell, he's bigger than I am and I sit in the front seat. Seriously, though, I don't always like him sitting in the back seat with his younger--physically much smaller--brother.

And, of course, he knows how to program the thing. He's better at it than we are.)

Now, I don't know what it's like where you live, but I live in Baltimore.

Yes, Baltimore. And I don't mean the suburbs of Baltimore.  I pay city taxes, hon. I reside (gasp) within the city limits.

Baltimore--home of The Wire, Homicide: Life On The Streets, and Hard Times At Douglass High.  You can argue about the accuracy of the portrayal of my beloved city, but its reputation is such that The Onion recently satirized Charm City's parade for our Super Bowl XVLII Champion Ravens.

[Yeah, baby, Super Bowl CHAMPS! Boo-yah! We're wacko for Flacco, baby!]

(See The Onion's Baltimore Looking For Safer City To Host Super Bowl Parade. It would be funny if it weren't so sad.)

I don't care what you say.  I love this city somethin' awful.  I'm not really sure what it is, exactly, that captivates me. Amazing restaurants? National Aquarium? Revered colleges and universities? Award-winning hospital?

Maybe it's because I spy John Waters at the grocery store now and again... and the cashier has no idea who he is!

Yes, that's him. How do you not know who John Waters is?
Um, hello, Hairspray?!

Maybe it's because you can buy crab cakes and a microbrew at the baseball stadium or the pockets of beautifully renovated row houses throughout the city. Perhaps it's because I can walk to the grocery store, the library, a Starbucks, the chinese carryout and still only be five miles from downtown.

Maybe it's because there are people here a whole helluva lot weirder than my kid with autism. (Like John Waters, for example.)

Yeah, hon.

My lust for Monument City aside, in truth we have a serious crime problem and some significant urban decay. As a resident, I've gotten good at avoiding dodgy neighborhoods and crime-infested areas when I'm not scoring some smack. (I kid, I kid you. It's a big problem. The city's, not mine.)

Anyhoo, my GPS?  Not so much with the dodging.  My kid?  Not so much either.

See, the thing is, Conor takes the GPS route as gospel.  If the thick blue line points one way to the bowling alley, then by God you are to follow that route like a Catholic pilgrim to Medugorje. One does not deviate from the path set by the almighty car navigation system.

Grave danger you are in. Impatient you are. The GPS you must follow.

Taking a turn not sanctioned by the GPS system? Have you gone to the dark side? (You can almost see the fireworks going off in Conor's brain. It blows. his. mind.)

So last night, as we were heading to our local Red Robin restaurant for dinner, I lost my bearings because I was in the back seat, engrossed in figuring out how to get Face Time to work on my typical son's iPhone. (Hint: don't let the little whippersnappers change the date and time on their phone. It mucks everything up.  Who knew?)

I look up at the buildings flashing by in the dark, and ask my husband, "Where ARE we?"

"Following the GPS, hon," he replied in his best fake-Baltimore accent.  (He's a carpetbagger from Connecticut. I know, right? He's cute though.)

Oh, for the love of Pete. "Which would you rather do," I asked my husband. "Drive through the ghetto following the GPS or tell Conor we have to go a different way than the route on the screen because it's safer?"

"Drive through the ghetto," he promptly answered.

"Ah," I declared. "Remember, Jim. If once you start down the dark path, forever will it dominate your destiny, consume you it will, as it did Obi-Wan's apprentice."

Be careful, my love.