On Death and The Not Knowing

If I don’t get this out now, I may never write anything again. I can’t go around it or over it, I can only go through it. It’s what I’ve learned, these past 16 years raising Conor, my son with autism who inspires this blog. You plant your feet, square your shoulders, clench your jaw, and just keep moving forward.

You face it. Stare it down. Wrestle it. It’s the only way.

Hold on a second, though. Let me take a deep breath.





On Saturday, December 27th, at 2:30pm, my brother-in-law, Tom Palermo, was killed by a drunk, texting driver as he biked a mile from my home. (We live close to my sister, and Tom wasn't far into his ride.)

She struck him as he rode in the bike lane, and she left him to die on the side of the road as she drove drunkenly onward for miles, and then back, passing the scene yet again until she went home and called a friend. The friend told her to go back. She blew a .22 on the breathalyzer test, well above the .08 legal limit in my state.

An avid cyclist and bike frame builder, Tom had been encouraged by my younger sister, Rachel, to enjoy the sunny, warm-for-December day, their kids happily playing with the Christmas toys they had received just two days earlier. (You can read more about it in this philly.com article.)

It’s hard to explain to your developmentally disabled teen how such a thing happens when you can’t really even understand it yourself. Words escape me. Usually I can figure out something to say, some black and white means of explaining the world to Conor—sometimes even a little white lie, truth be told--but this? I just can’t. For such a thing to happen…it makes no sense. Nine months later, it still makes no sense. Sometimes I look around even now and question myself, asking--wait, what just happened? It’s inexplicable.

It’s true, Conor knows that his Uncle Tom was in a bike accident and is gone. In the starkest of terms, he understands this. Over the years, he’s experienced loss—his Great-Grandma, his Grandpa. Emotionally, however, I’m not sure quite what is going on in his mind. Honestly, it may be years before we know. After all, he has trouble understanding and coping with his emotions on a typical day, with run-of-the-mill things.

His behavior deteriorated over the holiday break, yes, but it’s hard to piece out what was due to the traumatic event we experienced versus the usual behavioral challenges we face regularly over a protracted school break. Unstructured time is rarely good for my son, and the chaos and grief surrounding Tom’s death certainly meant my husband and I were less than capable in managing him or his schedule. Thankfully, his aids stepped in and tirelessly worked overtime.

Only once or twice have I seen Conor actually, honestly trying to process the accident, to understand it. He likes to ride his bike, you know? We usually stick to trails but sometimes we ride on the street. Because of his disability, we’ve insistently tried to instill safety rules with him since it’s not uncommon for individuals on the spectrum to have no sense of danger. Stay to the right, wear a helmet, stop at crosswalks, ring your bell to alert other riders and joggers, watch for cars.

“Uncle Tom made a mistake,” Conor blurted out one day in March, looking at me piercingly as we drove down the highway on spring break. We had taken him to Florida, a promised reward for good behavior on our Christmas vacation. The Christmas vacation we cut short to rush home to be with family after Tom’s death.

“No, Conor,” I replied emphatically, staring at the flat road ahead. “Uncle Tom did not make a mistake. The driver made a mistake.” I could tell he wanted some assurance that he’d be safe when he rode his bike.

I glanced quickly at him. “Uncle Tom had an accident, he made a mistake,” he repeated, still looking at me. His eye contact, usually so nonexistent, was intense.

“No, Conor, no,” I said. “The driver made a mistake. Not Uncle Tom. Uncle Tom did everything the way he was supposed to.”

“The driver didn’t make a back up plan. The driver was not paying attention, and she made a mistake,” he continued.

He repeats things, you know. Constantly. Rules, lessons learned, protocols, dates of when he had tantrums, and so on. Constantly repeating. It soothes him sometimes; other times, it agitates him. It reinforces the protocols; it brings up past hurts and transgressions. There seems to be no rhyme or reason. Sometimes we can use it to reinforce behaviors and learning, but other times it serves only to work him up more and so we ignore it or try to redirect him. It’s a complicated dance between us.

This consistent talk about Tom and the accident, though important for Conor, just stabs at me. It still hurts. I guess it always will.

We didn’t take him to the funeral. I couldn’t stand the thought of him disrupting the service, and it only would’ve contributed to unpredictable behavior. We took him to his Great-Grandmother’s funeral; he was so young and so involved in his autism. We didn’t think it would affect him.

We were wrong. Our mistake wasn’t immediately evident. It took a few years, but then, when he became upset, Conor would say he wished his father would die. It was clear that he didn’t really want his dad to die. He just wanted him to leave him alone and let him do what he wanted. But still.

After his grandfather’s funeral three years ago, not long after his discharge from his third hospitalization, Conor continued to say he wished his father would die when he was upset. Or agitated. When he’s angry, he says it to be hurtful.

Then, he started just randomly saying it. He came up with new and inventive ways to say it, too.

“Mom?” he might say in his singsong voice. “Mom? I want Paisley to come stay with Conor, Mommy, and Aidan in July.” Paisley is an aid that stays with us sometimes when my husband travels. She’s been with us for four years, a rare consistency for autism families.

“Why, honey, why do you want Paisley to come in July?” I might reply, not knowing what was coming.

“Because Daddy is going to have a funeral in July,” he might calmly reply.

He’s been doing this for years now. I’m supposed to ignore it, to redirect the conversation. Sometimes it works. Sometimes it doesn’t. Sometimes, I'm so exhausted or angry that I just don't care, and I give him a dirty look. Which is not ignoring it, mind you, but I’m only human. I have learned not to respond with words or conversation. It only escalates his behavior, particularly if he’s already agitated.

Last year, for a long period of time, Conor would say he wanted Paisley’s fiancé to die and then dissolve in peals of laughter. Or he’d say it and start escalating. But mostly…he giggles.

“Paisley is going to be crying because Don died,” he might giggle as he shovels sweet potato in his mouth.

“Eat your dinner, Conor,” I reply, gritting my teeth.

He still says it, but with less frequency because we’ve been ignoring it. And maybe because she actually married the guy. Except now? Now, Conor adds “in a bike accident” at the end. This is particularly painful in a family gathering with my newly widowed sister and her two young children. I know she understands, deep down, because she’s heard his comments about my husband before. But it can’t be easy to hear. And their kids? They're 7 and 5 years old. If they hear that? I don't know what I'd do. We've been lucky so far.

I wished that it helped to sit down and talk to him about it, about death and loss and coping. Talk to him like I talk to my typical child. With all my heart, I do. We’ve tried and tried. But it doesn’t help. It just seems to egg him on when he thinks it’s funny (such as the case with Paisley’s Don) or to escalate his behavior when it’s a signal he’s angry about something denied (like with his dad).

Honestly, we’re still also trying to figure out if its his Tourette’s Syndrome (yelling out inappropriate comments involuntarily is a symptom) or purposeful. I guess if it were purposeful, it would be better since we could target it behaviorally. His aids think it’s purposeful. The smiling, the giggling. Yelling it at us when he’s agitated. But if it were the Tourette’s…well, he couldn’t help it, I guess, and it would be hard, but at least I wouldn’t think he was a bastard for saying it. It's hard to think that about your child, especially one with a disability. But it's such a hurtful thing for him to say. I struggle with it.

At the end of the day, I think it’s purposeful. If I were a gambling woman, I would bet money on it. Is he saying it for attention? To express his loss? To soothe a compulsion? Because he honestly thinks it’s funny? To be hurtful? All of the above? None of the above? I don’t know, and that, in itself, is one of the incredibly difficult parts of raising my son with autism. The not knowing.





We really, really miss you, Tom. Wish you were here.

Catching Up

To begin with the obvious, it's been a good long while since I've written anything. At first, I felt like I didn't have much new to say. From my son's obsessions and behavioral protocols, his budget, his tantrums and his multiple hospitalizations, the struggle to provide a stable environment for my typical child, the impact of Mother Nature on our quest for routine and structure, the difficulty of holiday and summer breaks, blah blah blah wah wah wah--sometimes I feel I've touched on it all. Even the dog has had his due.

And if I'm honest, I've been in a bit of a funk for the last six months, and I've found that most people generally don't want to read something funky. Or smell it. Bruno Mars is good funky, but that's about it.

Then, like Dorothy in the Wizard of Oz, I got caught up in the tornado of planning a charity gala in

Being interviewed by media company at the gala for a
promotional video for Pathfinders for Autism.
Not sure I made the cut, but it was fun!
Picture by Rachel Rock Photography

October and early November. A fun kind of whirlwind, to be sure, but a significant time commitment nonetheless. All for a great cause, of course.

Pathfinders for Autism is a Maryland-based nonprofit that helps caregivers and individuals with autism find the support and services that they need, trains first responders and emergency personnel in dealing with individuals on the spectrum, hosts free family fun nights in our community, and more.

Being in charge of the live and silent auction meant a tremendous amount of groveling and begging for super cool items, so I spent most of my writing time making sure that committee members were getting some nice swag. I tell ya, being in management is really tough. It's hard telling people what to do all day. I mean, people who are not my husband.

(Oh, who am I kidding, only the dog listens to me, and I think it’s because he feels sorry for me.)

Next thing I know, the fantabulous gala was over (thank God, those 5 inch heels HURT, what was I thinking?), and Christmas came barreling. Shopping is such hard work for a demanding recipient—I mean, look at the effort Kim Kardashian puts into it--especially in a time crunch. Conor has pretty high expectations, and at 16 years old, he still believes in Santa Claus. I remember one year, I spent months trying to find one of those scrolling signs that you see in store fronts.

He never used it. Oh well.

Along with Christmas each year comes a trip to Massachusetts and other New England states to see family. Planning travel with my son with autism is such an angst-ridden process. It usually makes me want to hide my head in the sand.  

On our way home

(Which I would be happy to do if we were going to the beach… but no beach. Just an over-chlorinated hotel pool.)

We've had mixed results during our 'vacations' in the past. I mean, you never know if your macadamia nuts will be served to you in the bag instead of on a silver platter, for Pete's sake. I mean, seriously. And then they don't bother to heat up the lemon water to the most optimal temperature. How are you supposed to clean the macadamia nut dust off your fingers? Unbelievable.

It takes a ton of planning, in all seriousness, to ensure a successful, smooth experience when traveling with my son. I actually considered packing some sweet potatoes in my carry-on bag along with all his medications but came to my senses. (I packed them in the checked baggage. Duh. Nonstop flight.

For those that don't know, Conor eats a sweet potato every night. Every. Night.)

Surely, I remember thinking to myself, this year's trip up north would be much easier than last year's. 

This year, while we were away visiting my in-laws just after Christmas, my sister’s husband was struck and killed by a drunk driver as he rode his bicycle on a warm-for-December Saturday afternoon in Baltimore. We cut our trip short and flew back home as quickly as we could. Conor handled it well, all things considered.

I did not handle it well, myself.

This deserves its own, more thoughtful blog post, so that’s all I’ll say about that right now. It’s hard to write when you’re crying, I’ve discovered. And I get a headache from all the trying-not-to-cry-ing. (Conor gets upset when I am upset, so I try to limit how much he sees.)

Suffice to say, it’s been difficult to get back on track. Grief is exhausting, I’ve found. Not sure I really realized that before now. Nobody told me that. Or maybe I just didn’t understand.

In any case, while I’m writing the next blog post, click here to read an old one. It's about Rachel and Tom's wedding. Or rather, how they nicely included Conor in it.  

We miss you, Tom.

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.

Take Me Out To The Ball Game

Last night, we took Conor to a minor league baseball game at Ripken Stadium in Aberdeen, Maryland.

A local nonprofit, Pathfinders for Autism, coordinated a Free Family Fun event (sponsored by Morgan Stanley), for families with a loved one on the spectrum. I volunteer for Pathfinders, and this is one of many fun events we put on.

(See how I seamlessly worked in that plug for Pathfinders for Autism and our event sponsor? Smooooth. 'Cause that's how I roll.)

Conor loves these kinds of things, you betcha he does. He loves himself a community outing. So I slapped on some lipstick, we threw his backpack in the car, and headed 32 miles north to visit the Ironbirds as they took on Auburn. Conor rode shotgun, as usual. (Best position to play with the GPS. He's still obsessed.) I sat in the back with our typical 12 year-old son, Aidan, who ignored me and then quickly fell asleep.

10 miles into the trip, and my husband glanced back at me as I played with my iPhone in the backseat. "Check Conor out," he stage-whispered to me.

I tore my eyes away from my Facebook app and looked at Conor. My son was staring straight ahead at the road, taking a break from spinning the dial on the GPS and looking up addresses in Montana. (I don't know why Montana, just... Montana. He likes the zip codes there. Shrug.)

"What am I supposed to be checking out?" I stage-whispered back. I don't know why the hell we were whispering. He's not deaf, for crying out loud. He can hear us.

Too bad Conor wasn't dressed
this dapper when he
did his little Twist.
But it was a
baseball game,
after all.

Wait, what? What was that? Conor's cheek twitched and then his whole body did this little jumpy thing. Then he grabbed the library book he insisted on bringing on the trip (he never reads), and he shook it several times. A few seconds later, again, with the twitching and the jumpy and the shaking. Twitch, jump, shake shake shake. Twitch, jump, shake shake shake. Twitch, jump, shake shake shake. His own little involuntary version of The Twist.

Damn Tourette's. Months and months without a single tic, and then... guess it's back. It comes and goes. He doesn't have the worst case, but it does mean additional medication and sometimes the tics make him cranky.

I went back to looking at my phone, this time entering the date the tics started up again since we're seeing the neurologist in a few weeks.

We continued on to the stadium. I wish I could say that I enjoyed the game, but I didn't glimpse a second of it, really. See, Conor doesn't like to sit and watch baseball games. He lives for the food and entertainment.

"Excuse me," he barked at the Pathfinders for Autism staffer at the front entrance. "Do you know where is Rita's Italian Ice here?" Shelly kindly pointed the way. We trailed closely after him.

Conor wants to know when he can drive.

No, Conor didn't watch the game. He ping-ponged back and forth from the Rita's Italian Ice to the corn on the cob at the Seafood Shack (mmmmm, butter) to The Claw arcade game and back to popcorn. He posed with the mascot and the stadium sponsor's mini-monster truck, then bumped into the other patrons as he meandered around the small stadium.

He veered right and left, bobbing and weaving toward whatever caught his eye, unaware of social conventions like boundaries, right-of-way, and that invisible bubble of space people carry around with them.

In public, we try to keep him within arm's reach, to rope him in when we need, but it can be challenging. Still, most people were patient, and it wasn't too crowded.

And, lucky guy, he met retired Baltimore Oriole B.J. Surhoff, who also volunteers with Pathfinders for Autism, but Conor was more interested in getting B.J.'s pretty blonde wife's digits. "What's your name?" he asked her. "Do you text?"

"C'mon, lover boy," I muttered as I put my arm around his shoulders and turned him toward the exit. "Time to head out."

This is not the Ironbirds mascot. It's some steakhouse's mascot.
Conor still wanted his picture taken.
One of his in-home aids is from Kansas, so she gave him
this t-shirt from her last trip home.

Just A Schmear.

Guys, I found a schmear tonight. Of poop. On the closet door in our first floor bathroom.

Well, it's not really a closet, it's some doors we put on a shower stall that cost too much to take out of our miniature bathroom and truly convert to a closet, so it's a set of closet doors to a shower that I store stuff in for the bathroom like toilet paper, wipes, towels, and tampons and stuff.

Oh right, that's not the point.

What is the point, exactly?

Oh, the schmear. Right. Listen, I know I have no place to complain about the poop thing. My son is pretty independent in the toileting area, and I know plenty, I mean, PLENTY of people whose children are not, and they have Code Browns all the time. I'm not changing diapers on my 15 year old, so no complaints.

Not complaining. Just... explaining. That's right, explaining.

My kid is pretty verbal, he reads, he writes, he does some math. He cooks, he creates, he swims. I've got it, well, not great but ok compared to lots of families in my situation. I mean, there's the grand-mal tantrum thing, that sucks (particularly the three hospitalizations, one for 5 1/2 months), and the inappropriate behavior, the perseverations, and the upsets and the protocols out the whazoo and everything else that comes with his autism, but still...

So I'm just going to spend ten minutes meditating on how grateful I am for all those good things.

I'm going to pretend I'm that pretty while I pretend to meditate.

Ok, fuck it, fine, whatever, I'm complaining. I have a 15 year-old son with autism and lots of skills and still...still, with the schmears of poop. (Which Google keeps trying to change to schemers of poop, and I am not amused, Sergey. At all.)

I'm sorry, I know it's just a small thing, teeny-tiny, almost nothing, a little schmear, but it's just gross. And it catches me off guard. I think that's what it is, to be honest. I go along, thinking that this part of his life is fairly typical, you know, one less thing, and then--wham--autism, right in my face. In a very icky sort of way. I've spent the last ten minutes changing all the hand towels in the house because, well, you never know. Don't want to be scrubbing the day off of my face and--surprise! Here's a little schmear for ya, Mom!

Yeah, well, by now it's evident that my so-called meditating isn't helping me with the complaining and a positive outlook. So I think I'm gonna go on YouTube and watch videos of kittens and puppies cavorting with cheetahs and elephants to a Turn Down For What? soundtrack to put me in a better frame of mind.

On second thought, maybe I'l just throw darts at Julie Andrews as she sings "My Favorite Things". That's a calming, positive sort of activity, right?

A Spelling Bee

"Mom?" Conor called out in his new man/child baritone from the kitchen pantry around the corner. "Mom? What does a-s-s spell?"

"Excuse me, Conor, what was that?" I asked, bending over the open oven door. Hot air billowed over me as I took out Conor's lemon-flavored cupcakes. He's been cooking like a fiend lately.

"What did you say, babe?" I continued as I lifted the cupcake pans up onto the stove top, my hands encased in puffy, red, quilted oven mitts. Surely, I hadn't heard him right.

"What does a-s-s spell?" he repeated, coming around the corner to peer at me intensely. No, no smile on his face, he's not joking. He lifted his pointer finger for emphasis.

Quizzically, I cocked my head at him and parroted back, "what does a-s-s spell, Conor? What do you mean?" I felt the dread growing in my stomach. Dear Lord, first 'penis' and 'vagina' and now 'ass'? This teenage thing is getting more uncomfortable by the minute.

I thought about asking him to use it in a sentence, you know? To make sure I heard him right? But then he just would say, "What does a-s-s spell?" ('Cause it is in a sentence that way after all. Can't argue with that, I guess. Logical.)

"What does a-s-s spell?" he asked again.

"What do you mean? Did you see that somewhere?" I asked, trying to dodge the subject.

"Yes, here on the receipt for the vase you painted for Auntie Joyce," he replied, leading me back to the pantry. He means the one he painted, at the paint-your-own-pottery place during his earned community outing. "On the bulletin board."

What the... what?

I muttered invectives under my breath. I'll admit it, my first thought was a disgruntled employee put this description into the computer. Like, look at this stupid, small ass vase this disabled kid picked out, and now I'm going to have to explain to Conor about the word 'ass', and what it means, and it's not just a donkey or something mommy yells at the other drivers on the road when they're being stupid, and then I'm going to have to talk to the owner of the business, and Conor's in there all the time, and it would be awkward, and I'd have to give them all the stink eye, and they'll hate me even though it's not my fault...

(I'm not melodramatic at all. I don't catastrophize events or anything. No, not at all.

Don't tell my therapist. She thinks I'm all better.)

"What up, guys," my husband said as he entered the kitchen. I thrust the receipt in his face.

"Conor wants to know what the word 'a-s-s' means," I replied, tapping the receipt. I pointed at the word for emphasis. "Right there."

"Well, I'm going to call them and ask," he chuckled. (Well, duh. He's so rational and non-melodramatic and stuff.)

Assorted, the employee who answered the phone said. Surely there was a period after the abbreviation ass?

"Um, no, there's no period," my husband explained to the employee on the phone. "And Conor had lots of questions." He hung up.

"Assorted, she said it stands for assorted, the vases come in all sorts of sizes," he told me, smiling. "There was a lot of laughter."

Ok, then, there you go. A-s-s means assorted, Conor.

You know, I can just hear his voice in my head when we go to the paint-your-own-pottery place next time--

"Mom? Can I have a big ass vase this time?"

Going Old School

Last night, Conor downloaded Mariah Carey's Dreamlover video. (Each Friday and Monday night, Conor is allowed to download a song or video of his choice as long as it's not marked "E" for Explicit by iTunes.)



Yeah, it may be sugary and quite a bit dated (albeit with some extremely fine looking young men dancing, not that I noticed or anything); a little old school perhaps, but his last video choice was The Black Eyed Pea's My Humps. (Which, to be fair, is probably considered old school itself these days.)



Now, don't get me wrong. I love The Black Eyed Peas, and My Humps...well, nothin' wrong with a little rump shakin' now and again. I've been known to shake my own booty a time or two, although the effect was quite disappointing given that I have a severe shortage of junk in my trunk.

But yes, I had my reservations about the My Humps video.  Yet, I did let him download it last week, as it fit the parameter of not being marked "Explicit." Besides, he has access to YouTube during his Treasure Chest times, and since we often use this half hour window to do frivolous things like go to the bathroom, start dinner, parent our typical kid, or throw laundry in the machine, he can be unsupervised long enough to check it out on his own if he really wants.

It's a tough call sometimes. Particularly since I'm not the most, well, strict parent. (You know the saying--when the going gets tough, give in. That's about right, isn't it?)

Look, Conor used to tell me what video he wanted to download ahead of time, so I was able to go on YouTube myself to scope it out. But then I'd get into a discussion with my husband about the video in question, we'd go 'round and 'round, and often it was just hard to make the call. Sure, Beyoncé might be dancing around in a skimpy costume (my boy loves Beyoncé), but it covers more than some women wear on the beach, so... is that ok? Or is it not? Is this word ok? That word ok? These lyrics? Those lyrics?

Then Conor started putting off his decision until it was actually time to download the song, and the gig was up.

And, of course, there's also the stark reality that my son is growing up. I can't complain about his compulsive Caillou watching on the one hand, and then turn around and complain about exposure to older, more mature themes. I mean, do I want him watching baby shows and listening to baby songs for the rest of his life? No. Most definitively, no.  He has friends, he listens to the radio, he navigates the Internet like a champ. I can't keep him in a bubble. At the same time, we're struggling to  address appropriate behavior and language, and it's uncomfortable and hard.

And finally, do I want to provoke a tantrum over a video that isn't downright explicit? If it's Friday night at 8:30pm, and we're tired and he's tired and I want the kids to go to bed so I can have a glass of wine and watch TV with my husband, do I risk a throw-down over some young women shakin' what they got?

And so, here we are. Trying to navigate a transition to adulthood for a young man with extreme social deficits and some significant behavioral challenges but also a very curious mind. I imagine we'll go down some dead-ends unintentionally, but hopefully we'll figure it out. Time will tell, I suppose.

In the meantime, I think all this means I'm going to have to write another social story if Conor starts going on about lovely lady lumps and bumps and humps. Which I really hope he doesn't do, since ain't nobody got time for that.

I Believe In You?

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."

Re-entry

"Mom, how many dollars do you have left?" Conor asked me as I came in the door after my 5-day trip. His typical brother and I had gone to Florida for Spring Break, leaving Conor and his father to fend for themselves. (My boys are in separate school systems, so different weeks of Spring Break. It works for us.)

"I don't know, you'll have to ask your dad," I replied wearily, heaving the extra-large black rolling suitcase up and over the step into our foyer. The airline had hung a scarlet tag marked "HEAVY USE CAUTION" on my bag, announcing the shame of my over-packing to everyone whose eye it caught. My yellow carry-on bag fell off my shoulder and clunked onto the wooden floor.

"Mom," he continued, squeezing his hands together. "Mom, how many dollars do you have left?" (He means how much does he have left to spend. He switches pronouns sometimes. Of course, I'm sure my husband truly is wondering how much I have left to spend after 5 days in sunny Florida with our youngest son.)

"Conor, Mom just walked in the door," my husband, Jim, chided gently. "Why don't you say 'hi Mommy, how was your trip?'"

"HiMommyhowwasyourtrip?" Conor said. "How many dollars do you have left?" Jim shook his head.

"Six," my husband said, exasperated. "Conor, you have six dollars left to spend."

"Mom," Conor said, holding his hand out to take mine. "Can you help Conor order off of Clay King a triple light-switch plate for six dollars?"

"Sure, honey," I replied, sighing. I left the bags in the foyer where they landed. Maybe my imaginary butler will magically whisk them away, I thought. "I'll help you."

Coming home after a trip away from Conor is bittersweet for me. I love him, I miss him, but I need that annual break. (My husband gets to golf for a week with his buddies once a year. I get to go on Spring Break with Aidan and one of my closest friends. That's our deal.)

When I return, though, it seems as if Conor doesn't miss me at all. That's what I told my husband that night over a late dinner as the kids were engrossed in America's Funniest Videos.

"It's like he didn't miss me at all," I said to my husband, picking at my food. I felt weary and numb from a day's travel. "It's all about what I need to do for him, what he needs, what he wants me to do." It feels like he only misses what I usually do for him, like he's not missing me for, well, who I am to him. I know it's because of his disorder, of course, but it still hurts my feelings sometimes. As silly as that sounds.

It also didn't help that Conor had FaceTimed me everyday while I was away, sometimes twice. He would sneak away from my husband on his Treasure Chest time and videoconference me before Jim even knew what he was doing.

"I want Mommy to ride the tram while she FaceTimes Conor," he'd ask. (The resort has an electric shuttle, or tram, to take people around the campus. Conor went last year, so he knows exactly what is there.)

"I want Mommy to get ice cream and order cookies-and-cream ice cream and eat it while we FaceTime."

"I want Mommy to buy Conor's t-shirt in the gift shop while we FaceTime." Every time my cell phone rang, it felt like my own Svengali calling to order me around. Show me this, do it that way, do it on my terms.

"He missed you," my husband assured me. "Especially at night when it was your turn to put him to bed. He would ask about you. He missed you, I know he did."

"It doesn't feel like it," I replied, shoveling the food into my mouth. "It doesn't feel like it at all."

Give It A Rest

Have you ever been so tired that you can't fathom ever not being tired anymore? God, I am so tired, and I've been having these stupid heart palpitations since I had elective surgery in January.  (They do, I have to say, look fabulous, thanks for asking.)

These heart palpitations, though, are totally freaking me out.

And I'm supposed to be going away next week with my typical son for a bit of respite. Which sounds really great, but leaving for 5 days fills me with anxiety.

Well, fills me with more anxiety than I already feel on a daily basis because, let's be honest, I have anxiety all the time.

I suppose I could say it's because Conor is really Mommy-focused these days, but that's not the whole truth. There is so much routine for my husband to remember here at home, there's the ever-present fear of a tantrum, we have a freakin' menagerie of animals now, and of course, the palpitations.

(The cardiologist can see me in 3 weeks, the receptionist said. Oh sure, it can wait. It's just, you know, my heart.)

And Conor, who just turned 15 in February, he's having a hard time growing up recently. I know this, because he tells me he doesn't want to grow up.

"Conor," I said to him this morning as he begrudgingly woke up over a bowl of oatmeal, "you did a really nice job of making a teenager decision last night to do your BRTs when you were upset, and to stay on Level 3 with your good behavior. Way to go!"

"Conor doesn't want to grow up," he muttered, rubbing his eyes.

"Why?" I asked. "Are you scared to grow up?" (I know, I'm leading the witness. Sometimes you have to, the communication disorder is just so hard.)

"Yes," he replied. "Conor wants to be a baby."

Of course, in the past, Conor has said he wants to be a baby because "babies get to hit". Those are his words, by the way. Babies don't get in trouble for hitting, he thinks. (Ok, insert frowny face here.)

But this time he admitted that he was scared to grow up. Which I get, 'cause it's, you know, scary. And he can't deal with the increased societal pressures of behaving appropriately very well. It's hard for him to hold it together a lot of the time.

But then we watched "My Cat From Hell" and the woman's cat had died. (It was the replacement cat that was the terror.)

"Why did the cat named Mia die?" Conor asked me, tucked under the fleece blanket on our couch. It's been freezing here in Maryland.

"Because it was old," I said. (It was.)

"Conor's not getting old. Conor won't die," he continued.

"No, sweetie," I assured him, patting his arm. "You're still young! You're just a teenager!"

Christ, I thought to myself. Maybe I'll stop complaining about him watching Caillou after all. Nobody ever dies on Caillou. It's not like watching a Disney movie.

Still, I don't have to worry about that today. I'm too busy worrying just about next week and how things will go while I am gone. Still, I will get on that plane tomorrow with my almost 12 year old typical kid and will close my eyes and hope that everything goes smoothly. Except now the weather forecast is calling for snow and ice tonight into tomorrow because, well, why not?

Yeah, something else for me to worry about. Sigh. I need a break.

Keep Your Hands To Yourself

"Conor wants to touch my leg closer to my penis," I said.

"He says that?" his behaviorist, Karen, asked as her eyebrows shot up.

"Yes, he does," I replied, rolling my eyes. "Then he tries to touch my upper thigh."

Just for the record, I don't have a penis. Not sure why I feel the need to say that, but I do, so I am. So there we go. 

And for some reason, I was pretty sure Conor knew women didn't have penises. I feel like I taught him about the different type of equipment years ago. Evidently not. He still screws up his pronouns sometimes so maybe he's just flipping it around? (The pronouns, not his penis.)

I don't know. He's still trying to touch my upper inner thigh inappropriately despite my blocking/ignoring/re-directing, and it's starting to really freak me out. And, if I'm being honest, to piss me off royally.

"Has he had sex ed?" Karen continued to press me. "I used to teach sex ed, I can put something together for him."

Oh dear God, I am not prepared for Conor and the whole sex education thing. 

Look, I'm no prude. I've filled in the birds and the bees for his typical brother years ago. Hell, thanks to my unfiltered mouth, we've even had to explain to Aidan what the term 'ho' means. And, props to Google and an improperly set parental control filter, he looked up the literal meaning of the f-bomb on the Internet himself and told me all about it. ("I like to know things," Aidan told me. Well, now you know.)

Fuck, now Aidan knows what that means.

So, back to Conor. We've had our brushes with needing sex ed, what with the questions about eggs, his infatuation with pretty women, and even a discussion about S&M. (Thank you, Rihanna, for that little one.)

It's just that you never know what you're gonna get with Conor, and I do not want to be in the mall listening to him yell out vaGIna vaGIna vaGIna!

I don't know why that would be more embarrassing than his calling out PEnis PEnis PEnis!, which he may do--while giggling. (Insert discussion of feminist/misogynist/patriarchal society/puritanism here.) All I know is that I don't want to be around when Conor starts calling either of those things out as we leave the mall's food court. Just... no, I don't want that. Nobody wants that.

So yes, I will happily hand off the sex education topic for my son on the spectrum to his behaviorist. Leave it to the professional. (Although, in fairness to Karen, that doesn't mean you won't hear Conor belting out vaGIna at the mall's food court, sad to say.) 

In the meantime, since he does this most frequently during his morning routine, Karen has come up with a means of removing myself, somewhat, from this process. That's the idea anyway. He's fixated on having me help him do the things he needs to do in the morning (as opposed to his father helping him).  


She's broken down the steps in his morning routine, and we're working on his independence in this area. I start him off with the first item on the token board and check-in periodically with him to make sure he's moving along, trying to limit the verbal prompts and helping out when needed. He's supposed to move the token down to the bottom when he's completed that step.

Reducing our interaction will hopefully lower the number of times he's engaging in this fucking annoying behavior, thus (again, hopefully) reducing the self-reinforcing aspect of it and limiting its saliency.

So win-win: more independence in a daily routine and less groping of his mom's upper inner thigh. And, no sex education talk for me.

Win-win-win!



Look, I tell Conor, just don't hand me no lines and keep your hands to yourself.

Hey, it's a sing-along. (Start around 0.53. The first 30 seconds are pretty boring. The quality is terrible but it was 1987.)