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 Fourth of July

On the 4th of July this year, Conor rode his bike quite slowly in the neighborhood parade along with the toddlers and their wagons, their dogs, and their moms. He ate a red, white, and blue popsicle, and--towering over the younger kids--danced and jumped in the water shower emanating from the firetruck that parked at the end of the street.

And then he drank water from a cup he found on the street, dipping it into a pothole by the front passenger-side tire of the red-white-and-gold firetruck, lifting it to his lips, and gulping.

Yeah, that's what I said. On the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street.

I learned this from his aid, Paisley, who accompanied me on the outing. She told me as we walked Conor and his bike down the alley to our house, the two of them soaked through from the firetruck shower.

(It's a fire pump truck, right? Is that the technical term? No matter, I suppose.) I was relatively dry, having stood by a tree with our bikes a short distance away. I justified my dryness by telling myself that she was getting paid for her time, so it was ok that I was being a jerk, standing away from the jumble of jumping little kids and the water shower.

"I tried to get there to block him from doing it," she said a bit dejectedly. I could tell she felt badly. "But I couldn't get there fast enough." I just stared at her. "Shit," I said, my stomach sinking. She nodded.

I fell silent. What was there to say? Mutely, we put the bike back in the garage, walked Conor into the house, and I followed Conor up the stairs to his bedroom to change his sopping clothes. Paisley disappeared into the powder room to change as well. (This wasn't her first 4th of July with us, so she came prepared. Clearly, I've been a jerk before.)

After a few minutes, Conor--in dry t-shirt and shorts--threw the sopping clothes in the laundry basket, and I escorted him back downstairs so Paisley could help him with his lunch. Quietly, I took my husband aside and told him what Conor had done. That our 15 year-old had drank water from a pothole in the road, using a clear plastic cup he found on the street.

And then I trudged wearily back up the stairs. I sat on the edge of our king-sized bed, and I cried. Not the hot, tumultuous tears of pain and anger and frustration that I often emit after one of my son's amazing tantrums. No, these were the quiet kind, just a few of them, really. I felt queasy.

You know, my son has so many skills. He's made great progress since he regressed. He's quite verbal (although still struggling conversationally). He's independent in the bathroom (yet he still struggles with that at times, too). He's an artist and a baker. He loves listening to music and bouncing a basketball, often at the same time. He's a keen observer of his environment, and he doesn't miss much even if you think he's not listening.

But still... but still, so disabled.

What is that, I wondered to myself as the tears plopped down on the back of my freckled, increasingly wizened hands. What makes him think--hey, there's a cup there, and here's a pool of water in the road, and I'm going to use this dirty cup to drink this dirty water?

What part of his brain thinks, WOW, what a great idea!?!

What is that?

Sure, he could be thirsty. I get that. But this is a kid who wouldn't drink bottled Deer Park spring water in the Sahara desert at high noon. No, not my kid. He hates water.

Cranberry juice, root beer, Crystal Light, lemonade--these are the things in his repertoire. He knows, he asks me for a drink all the time. All the time!

I'm thirsty, he might say, can we stop at the 7 Eleven on Falls Road?

I used to think that if I gave my son enough therapy, enough medical attention, enough typical peer interaction, enough community inclusion, he wouldn't do such inexplicable things anymore.

I guess not. It's not enough therapy, or maybe not the right things. I don't know. I suppose it doesn't matter what we do. It just is. You know, I'm not sure why this incident continues to bother me, nag at me. It makes me feel defeated, I guess. Beaten down.

This summer, on the Fourth of July, Conor drank water from a pothole in the road, using a clear, plastic cup he found on the street. What is that?

Easy-Peasy

By mid-July, Conor had not had a full-blown tantrum for seven and a half months, the longest amount of time since he began tantruming that day in February 2010. This remarkable feat was made possible by two short-term stints in Sheppard Pratt (a local psychiatric facility), a 5 1/2 month inpatient hospitalization at the Kennedy Krieger Institute's NeuroBehavioral Unit, two psychiatrists (one on-unit, one off) and their multiple meds, one neurologist, two behaviorists (simultaneously), six behavioral protocols, and 20 hours+ of in-home behavioral aids for the last 2 1/2 years, and a Level 5 school (that's a step below residential school here in Maryland) with a 6' 4" tall, 250lb 1:1 aid that I like to call The Big Man.

You know, easy-peasy. 

Aint' nothin' but a thing.

Good times never last, they say, and on July 23rd, Conor gave my husband a big 'ol tantrum for his 56th birthday (usually I get these on my birthday so I'm a little jealous), then gave his school aid a tantrum on July 31st, the last day of summer school (helping The Big Man truly appreciate his Toronto vacation, I'm sure), and then had an almost-tantrum on August 18th in which we panicked and called his in-home aid to come back to the house for a few hours to help us manage the behaviors.

Needless to say, we found ourselves with an emergency appointment on August 1st with his psychiatrist so that we could increase his happy medicine. (Prozac.) We declined to increase the antipsychotic (Abilify) since we're struggling with his overweightness but thought it was a good strategy to increase the SSRI. Despite the horrific hiccup on the 18th with the near-tantrum, we struggled through the rest of the summer break, and seamlessly started school on August 25th.

You know, I really don't know what to say here. Things were going great, until they weren't. 

In June, we were in Conor's psychiatrist's office for a routine visit, saying just how great, how awesome he was doing. Smiles all around. 

Balloons, confetti, the works. I'm dreaming of long weekends away with my husband on some tropical island. Conor's doing great, hooray!

In August, I'm calling her scheduler in a panic, hoping to get some grip on his mood and behavior.  And I'm back to feeling like I can barely leave our house.

Sure, in July our primary behaviorist went on maternity leave, but she nicely found us a qualified substitute who came with her to be trained prior to the leave. And of course, in June, our secondary behaviorist had left that company (and therefore us), but hey, she was the 4th behaviorist with that group in less than 3 years. (Shrug.) So we were used to that. 

Yes, it was the summer, and summer always sucks, but, thanks to lots of snow days, the school calendar ran into sleep-away camp, which ran into day camp, which then ran into summer school. Bam, bam, bam. Busy is good, structure is golden.

Sure, sure, our in-home aid who had been with us the longest said she'd have to cut her hours in half since she's going back to school (the nerve, really, for her to have a life), so we had to find and train yet another in-home aid. Who then said he could only do half of half of her hours so we have to find and train still another one.

Sweet baby Jesus, it's like I'm running a freakin' Applebees over here, what with the turnover, and the training, the messes, and the emergencies but without the teriyaki-sauce smothered chicken breasts. 

Seriously, I am not qualified to do all this, I was a freakin' ENGLISH MAJOR, for God's sake. Everyone knows that English majors are useless for anything but reading, writing, and drinking coffee. Who doesn't know that?

Ok, ok, so I went on to get an MBA at a qualified institution of higher education, I should know what I'm doing, managing all these people and things. But everyone knows that MBAs are useless for anything but filling out forms, needlessly networking, googling, and drinking coffee. Everyone.

Let's face it, all I'm really good at is filing. I file like a beast. Which helps with the paperwork, but not much else.

Half the time, trying to manage all this for my son, I feel like I've totally been caught with my pants down, but I can't really figure out why since some of the time I'm wearing a skirt. (Especially in the summer, you know, for the air flow.)

I'm really trying, that's the sad part. Trying hard.

It's all just a bit too much to handle, is all I'm saying. The meds, the moods, the constant obsessions, the aids, school, camp, his protocols, doctors, social stories ... his challenging behavior.

For once, just once, just for a little while, I want things with Conor to be easy.

Or at least, easier. I'll settle for easier.

The Pinky Swear

"You don't need this mug you made for Miss Kaidyn anymore. You don't have tantrums anymore, pinky swear," Conor declared. "I'm going to throw it in the trash."

"Wait, what?" I replied from my computer perch around the corner. I was engrossed in Facebook, as usual, ignoring Conor as he paced around our kitchen.

I pushed my chair back just in time to see Conor throw the mug he insisted be created into the kitchen trash.

"There!" he pronounced loudly.

"Conor," I said, a bit alarmed, "why did you throw the mug for Miss Kaidyn in the trash? It says 'Miss Kaidyn is The Best'. She's gonna love it!" (Lately, he's been going around throwing my kitchenware into the trash and saying we don't need it anymore. I have no earthly idea why he's doing this. I've lost a muffin pan and rescued a loaf pan so far.)

"Conor doesn't have tantrums anymore, you pinky swore," he replied, looking earnest.

"Honey, that's great, but Miss Kaidyn is still coming tomorrow for your session."

"Why?!?" Conor said flatly, confused.

"Because, Miss Karen just had a baby last week, so Miss Kaidyn is coming for the session instead. To do skills," I said. "We explained this to you many times."

He walked off in a bit of a huff. I think he thought he wriggled out of skills session since Miss Karen was on leave. I don't know. I rescued the mug. You never know, he may want it back. Or not.

For the past year and a half, Miss Karen, a Board Certified Behavior Analyst, has been coming to our home to work with Conor on his social skills and life skills, and collaborating with the Kennedy Krieger Institute's NeuroBehavioral Unit to ameliorate his challenging tantrum behavior.

Recently, however, she decided to push out another rug rat of her own, so now she's on maternity leave. Fortunately, she found a BCBA willing to take us on for a short-term stint, and Miss Karen explained the situation to Conor before she squeezed out the little pipsqueak, thank God.

It's true, Conor's behavior has improved greatly. He's made good progress since Miss Karen came on board. Sometimes, though, I think this behaviorist thing is overrated. I mean, how hard can it be? I came up with this 'pinky swear' thing with Conor all on my own. And it's been working great.

Make this meatloaf gluten-free, and I'll put my lips
all over it. The singer? Not so much.

See, like many teenage boys, Conor likes to make promises that he clearly has no intention of keeping. (He's like Meatloaf. Give him what he wants, and he promises to love you forever. Or not. Ask him in the morning.)

"You'll get on the treadmill later," he promises me. (He switches pronouns. He means he'll get on the treadmill. Or not.)

"Conor will take a shower at 7:30pm," he assures us. Or maybe 8:00pm. Or not.

"You'll do a BRT with Mommy after Miss Paisley leaves," he says to his in-home aid. "Uh-huh," she replies with a smile. "Sure you will."

One day, I do not know what possessed me, but when Conor made one of his many promises, I held up my right pinky and said, "Swear, Conor. Pinky swear that you'll do it next time."

He looked puzzled. "What is 'pinky swear'?" He asked, wrapping his pinky around mine.

"It's a promise. When you say you're going to do something, and you pinky swear, that means you have to do it," I explained earnestly.

That was it. No social story. No well-thought out behavior protocol based on Applied Behavioral Analysis techniques or studies showing the efficacy of the pinky swear.

No video model showing Conor how to do the pinky swear, no social group with peers discussing the value of the pinky swear. Just a mom with the attitude of a 12 year-old girl with a Hello Kitty barrette, a patent leather purse, and sparkly pink nails.

And whattayaknow, it worked! Every time he makes one of his pronouncements--"Next time, I'll change into my bathing suit in the bathroom"--and I make him pinky swear? Half the time, he's cool with it and the other half, he gets this look on his face like, oh shit she caught me. And he does it. He does it!

"You pinky swore, Conor," I say to him when he balks at doing what he promised.

"Pinky swear is a promise to next time," he often crows back. I'll high-five that.

Yeah, who needs a Master's degree in behavioral analysis or human services or some such nonsense? Shit, if I had known it was this simple, we would've avoided a whole helluva lot of problems.



This poor woman in the video, wearing that horrid white outfit and having to be groped by Meatloaf, LOL. But boy, does it bring back college memories.

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."

So Sue Me

So, the last time I wrote, I lied. Well, I didn't lie exactly. I don't know what you call it when it's unintentional. An untruth? I was misinformed?

Look, I'll just come out with it. The last time I wrote, I said that Conor only really identifies two emotions: happy and sad. While these are the emotions that I know he can correctly identify and express, I now think we can add 'scared' to that list.

I know this because my husband raised his voice to our typical son, Aidan, the other day, and Conor became quite flustered.

"Why is Daddy yelling?" Conor asked.

"I'm sorry, I didn't mean to yell," my husband apologized. "How did that make you feel, when Daddy yelled?"

"Scared," Conor answered, looking furtively at his younger brother who was sulking at the kitchen table. (Aidan certainly didn't look scared. More like pissed off.)

Now, don't be all judge-y about the yelling, like Oprah or something. None of us are cyborgs over here. It had been a long day, and Aidan screwed up as 11 year-old kids sometimes do. I know it's all rainbows and ice cream where you live, but over here we just have a lot of pickles sometimes. (That makes no kind of sense, but you know what I mean.)

Anyway, I digress. So. We now know Conor identifies and expresses 3 emotions--happy, sad, and scared. On occasion, Conor will say he's disappointed. But does he really know what that means?

Or is Conor simply parroting back words we've said so many times?

What, lady, can't build a seven level
sand castle for your kid? Incompetent boob.

Let's be honest. With me for a mom, Conor has become well acquainted with the concept of 'disappointment'. So it's possible he really understands it.

In my defense, I blame Kai-Lan. See, that little twit made a seven level sand castle in one of her episodes that I simply could not replicate on our vacation last year.

Needless to say, Conor was a little disappointed.


"WANT MOMMY TO MAKE A SEVEN LEVEL SAND CASTLE!" Conor bellowed.

Yeah, there you go Conor! Bam!
Eat that, Kai-Lan.

Stupid-ass Kai-Lan, I muttered under my breath as I desperately tried to build a tower in the too-dry sand.

"Oh Conor, you must be so disappointed that Mommy has no idea how to build you a seven level sand castle, " I said to him. I felt great shame. But seriously, who can keep up with a cartoon? I have enough trouble keeping up with the SuperMoms on Pinterest.

Really, it ruined his entire beach vacation last year, my utter incompetence in sand sculpture. I can dig my toes in the sand, but that's the extent of my sand-based talents.

Suck it, Kai-Lan.

And that's just one example. I have a million more. Brick walls don't open up to a magical train to take you to Hogwarts, no matter how hard you ram the shopping cart into them. (True story.) I tried to make it happen for you, Conor, really I did, but I'm no Molly Weasley. And no matter how hard I try, I can't make the Target discount gingerbread kit look like the picture on the box. It ain't happenin'.

The gist of it is that although Conor will say he's disappointed, I'm not sure if he's accurately identifying his emotion (he's usually quite upset at the time) or if he's just parroting back what I've said to him many, many, many times. Seriously, I've screwed up more than once, as hard as that is to imagine. Each time, I tell him how disappointed he must feel.

Thus, in the interest of trying to teach Conor how to both identify and to express a fuller range of his emotions while finding constructive ways of coping with them (i.e. not throwing a mega-watt tantrum on the beach because your mom is an incompetent boob and not a cartoon preschooler that can build seven level sand castles), we've recently introduced a 5-point scale into Conor's behavioral protocol. (By we, I mean his behaviorist.)

This scale is based on The Incredible 5-Point Scale: The Significantly Improved and Expanded Second Edition by Kari Dunn Buron and Mitzi Curtis. Makes me kinda wonder how bad the first edition was if they had to significantly improve and expand it, but now I'm just being judge-y. Like Oprah and the yelling.

(Sorry for the poor quality, but my scanner is a cheap piece of crap. It really hampers my work, and I get poor marks for it on my performance reviews all the time.)

The Explosive Guy is my favorite. The picture, I mean, not when Conor is The Explosive Guy--that goes without saying.

As you can see (with your reading glasses maybe), it matches a stage with an animal, a description of his behavior when he feels a certain way, a picture of someone demonstrating the emotion, and things that Conor can do to calm down.

Oh, and there is a caregiver guide as well. Just in case you don't figure out what to do by Conor's Tip Sheet. 

(Again, apologies for the quality. I'm sorry, it's just that my OCD tendencies make me apologize too often when things are not perfect. I apologize for continuing to say I'm sorry. Sorry.)

Anyway, our primary goal is to reduce the frequency of tantrums, of course, by first helping Conor to identify how he's feeling and then to master steps that he can do to calm himself. For example, getting a snack and a drink often calms Conor because he's prone to agitation when he's hungry. Doing yoga poses and relaxation techniques work like a charm, when you can get him to participate in them.

(Washing face and hands sounds like a great idea, except now he screams for you to wash his belly. Sigh. So we wash his belly. Not the same thing.)

Our second goal is to reduce the number of "upsets" that he has. Currently, Conor has roughly 1.5 tantrums per month, a great reduction over the past two years. (Thank you, Kennedy Krieger NBU.) But the number of times that he almost has a burst (see Stage 4 above, the "bee"), is much more often. It's quite stressful. 

I'm sorry, let me re-phrase that. 

It's quite stressful. 

Yeah, like that, but worse.

So we're trying to catch him at Stage 2 or Stage 3. Heading it off at the pass, as it were. It's been helpful, actually. Not the miracle answer; just another tool in the tool box.

So there, that's it. My big confession. Conor can identify 3, maybe 4 emotions, not just 2 like I said before. So I lied (not intentionally, to be sure), so sue me.

Of course, there's a social story his behaviorist wrote to go with it all. And I'm secretly thrilled that I figured out, finally, how to get the slides in the movie to go slower. Yay me!

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.

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.”

An Artist At Work

Conor's self portrait in clay and mixed media

One weekend not too long ago, Mary Beth Marsden, a local journalist, interviewed me about Conor and his art for a video she was putting together for Real Look Autism. A nonprofit organization, Real Look Autism uses videos to share ideas for working with children who have Autism Spectrum Disorders. Her website and YouTube channel also serve as places to share insights.

Mary Beth and I chatted about Conor's interests, his art, our mutual friends, the autism community. (She has a child on the spectrum as well.) As we talked quietly in the next room, her cameraman, John, filmed one of Conor's art therapy sessions.

"Is Conor always this quiet?" she whispered as we watched Conor and his therapist from the next room.

"No," I replied. "It depends on the day."

Some days my ears ring from all his chattering and sing songs, requests and scripts. Other days, the silence deafens me and I strain to hear a murmured 'yes' or 'please'. I'm never quite sure why this is so. Why some days he seems to grasp language so easily, and other days it eludes him as he searches mightily for it. Sometimes you can actually see the struggle on his face. Other times, it's as if he can't be bothered; there are more interesting things going on inside his head.

Is he tired? Anxious? Noncompliant? Out of sorts? Overwhelmed?  Preoccupied? Do the words move around in there, so much so that he can't find them some days?

Yes. No. Maybe. I think so? Probably. Who knows.

It's a mystery to me, as much of my son is. I've always admired those parents, mostly moms, that proclaim that they know their child best. Know them so intimately, in fact, that they can tell you, without a shred of doubt, what their child is thinking and feeling, what the best approach involves.

Too often, for my comfort at least, I feel my son is hidden behind a shroud, obscured from my ever knowing him thoroughly and intimately. I'd like to lift that veil completely one day. For now, we're stuck with peeking under it once in awhile. It vexes me, to be honest. I want to know what's in there, what is in that brain? There has got to be more in there than he can ever express verbally.

Conor's airport. He says this is the Southwest terminal.
He has plans for an American Airlines terminal now too.

Perhaps that's what made me try art therapy with Conor so many years ago. I had read about it in one of the very first Pathfinders for Autism newsletters, and art therapy sounded like a fun-but-therapeutic way to fill 45 minutes. Or maybe I was in my 'throw something at the autism and see if it sticks' phase. (We tried horseback riding and massage as well. He liked massage; I liked the horses. We stuck with massage. I miss the barn and the sounds of the horses huffing at me.)

Oh yes, of course, we tried Applied Behavioral Analysis, Relationship Development Intervention, biomedical treatments and other things as well. All had their place.

But art therapy? Seeing Conor become an artist while improving his functional, life, and social skills has been a uniquely joyful experience for me.

I've included two videos. First, is the marvelous piece from Real Look Autism featuring his art therapist, Cathy Goucher. Cathy co-founded Make Studio, and she has been working with Conor since he was eight years old. They did a really wonderful job. You'll notice, however, that Conor doesn't talk much in the video. For some reason, that day, he didn't have much to say. In the end, I think he was tired, and he didn't like the fact that art therapy was on Saturday instead of Tuesday. I guess.




In the video below, I asked Conor to talk about the hotel he is building with Cathy. (Pardon the sound of running water, I neglected to turn off the filters for the fish tanks. Sigh.)

Sometimes he says he needs help thinking of the answer. And at one point, Conor starts to list numbers he somehow associates with using the treadmill.  I have no idea what it all means (something about how long you walk on the treadmill), but I think it provides some insight into how... odd his thinking and verbalizing seems sometimes. Hey, at least he corrects me when I'm wrong about the levels in his hotel. And why am I so loud?

Because I Said So

Yeah, I did it. I swore I never would, at least to Conor, but I did. It was inevitable, I suppose. I've spent years trying to structure things, and communicate things, and explain things in terms he can understand.

Years of speech therapy focusing on expressive and receptive language, social skills groups that never quite worked, reams of paper spent on social story after social story, doctors and diets geared toward better health, better behavior, increased language and learning, hours upon hours upon dollars of Applied Behavioral Analysis to break down every little task and academic goal.

All trying to integrate him more smoothly into our family, our community, into... our life. To help him understand the world and to help the world understand him.

At the end of the day, I just cracked.

"Mom?" Conor asked, squeezing his hands together in front of his ample belly. "Can Conor play the drums now?"

"No," I replied, sighing with exhaustion. "You can't play the drums now."

Conor had already eaten, that's true, but my husband and I were trying to get our dinner on the table and do homework with Aidan while simultaneously tripping over the dog with every step. (Poor Linus had been in the kennel while we were away, and he had what Aidan lovingly calls "kennel fever". Translation: the dog has lost his damn mind.)

It had been a long day, for reasons that are now unclear to me. But I was exhausted and wanted a modicum of quiet.

"Why?" Conor asked, continuing to wring his hands together. "Why can't Conor play the drums?"

"Because I said so, Conor. That's why."

Oh boy. There it is. Yeah, I said it.

We'd spent years trying to elicit the 'w' questions out of Conor. You know them from journalism class--who, what, where, when, why and how. (I don't know how 'how' got in there, but there it is at the end. It must be at the end, because Conor doesn't ask 'how' questions yet.) Finally, after gobs of intensive intervention ('gobs' being the clinical term for years and years), Conor began asking as many 'why' questions as a typical toddler.
For a kid who lost all his language for a good long while, asking 'why' is a huge deal.

HUGE. 

I loved it, I reveled in it. I swore I'd always give him an explanation to the 'why'. Until I started running out of answers.

Merry Christmas?

I should clarify that Conor's usually not asking 'why' questions about abstract concepts. You know the typical--why is the sky blue, Mummy? Why are the leaves green, Mummy? Why are there so many Kardashians, Mum?

Generally, Conor's asking 'why' in response to a decision we've made that affects him or when someone is showing a strong emotion. ("Why is that baby crying?" for example. Or, why the hell can't I play on the drums, lady?)

And so here I was, just too weary to explain to him that my ears were just too tired to hear him bang bang bang on his brother's drum set. How do I explain that to my son who never seems to tire of his own voice, loud music, slapping rubber balls against brick walls, the thwack thwack thwack of the basketball on the court?

But then again, I really can't believe I even said it to him. Because I said so. I mean, what's next?

Improved eye contact and joint attention? Don't you look at me like that! 

Modeling behavior from typical peers? If Johnny jumped off the bridge, would you jump off too?

Do it, man. It's totally RAD!

Having to explain an abstract concept more than just a few times so he understands it? How many times do I have to tell you?

Refuse to deal with noncompliant behavior? Wait until your father gets home! 

All because I was just too exhausted to explain to Conor why he couldn't crash away at the cymbals on his brother's drum set.

I suppose it's not that big of a deal. After all, most parents find themselves spitting out these words to their spawn eventually. Perhaps it's even inevitable, despite best intentions.

Come to think of it, I've got a few other parenting gems that I haven't pulled out yet when dealing with either of my boys.  

Phrases like--

You and me? We're going to have a come to Jesus if you don't straighten out.

Yeah, I'll give you somethin' to cry about.

Don't smile, your face will crack.

If you think you're going out in those clothes, you got a 'nother thing comin'.

And my favorite--

Sit your ass down in that chair, I'm not done talkin' yet.