Wednesday, January 29, 2014


Two weekends ago, in a moment of weakness, I agreed to let Conor earn a hermit crab named Linda as his next Extreme Superstar Award. 

What can I say? He hit me up before I was finished my coffee, and I was only halfway through the Sunday Styles section of the New York Times. I hadn’t even had the chance to read about the five designer outfits Julia Roberts wore one whirlwind day in Manhattan before he was hounding me.

“When can Conor get a hermit crab named Linda?!?” he crowed at me for the hundredth time, pointing his finger at my face. “I want to put it on the calendar rules book!”

Before I knew what was happening, I opened my mouth and blurted, “You can earn a hermit crab named Linda for your next Extreme Superstar Award, Conor.” Close mouth. Open mouth again, insert hot sweet coffee, close mouth. (Ah, look, Julia Roberts is wearing Stella McCartney. Now Valentino. Hey, mixing it up with Dolce & Gabanna!) 

Conor's big blue eyes got even wider, and he looked shocked for a moment. "YES!" he yelled. "Named LINDA!"

Look, Ma, a new tattoo!
Oh, for the love of God, let me just say that for my next tattoo, I should have “Sucker” inked on my forehead. Do I need another animal to try to keep alive? After all, Linda will join our already packed menagerie (if/when Conor earns it)—Linus (standard poodle), Gordon (gecko), Sierra (bearded dragon), and Rex and Fredella (goldfish). I successfully thwarted a request for a rabbit named Dakota once, but I totally caved on the crab. Maybe it’s because I’m from Maryland; we do love our crabs. Can’t deny that. They're delicious.

Ah, hell, the way I figure it, a hermit crab is much less work than any of the other animals. Plus, it’s a lot cheaper than a new bed frame, which also tops the list of Extreme Superstar Award reinforcers.

Look, this is how the whole thing went down.

Last September, Conor sees me redecorating his typical brother’s room. Despite being almost 12 years old, Aidan’s bedroom still looked much like a toddler’s. Some paint, a new rug, an Ikea chair, and some sports pictures on the wall, and voila! Teenage room.

Well, you woulda thought I just bought his brother a brand new puppy. From then on, the idea of re-doing his bedroom gripped Conor’s brain like a vise. Never mind that we had done it over just before his discharge from the NeuroBehavioral Unit. (Done nicely with two accent walls in colonial red, his favorite color.) 

Ok, I admit it, his room is a little bare, at least half of it. 

We're supposed to use the mat to block head banging but
usually we're just barely hanging on during the firestorm.

So now it's just a crude headboard.

We deliberately keep it that way, as we try to manage his tantrums in his bedroom. Less stuff to throw at us, ya know? He tore all the pictures and the star light down and pitched them at us in a rage anyway, so I didn’t bother to replace them. The other side of the room is more… well, cluttered.

Funny, I never noticed how completely different the two sides of the room look.
Kind of split-personality. Oh look, there's the other mat in the corner by the lamp.

He never seemed to care. But now? Now, Conor wanted to change it all. Preferably that day. Like, NOW.  (Did I say he wanted it now? Wasn't sure if I mentioned that.)
I know he wanted it now, because he told me. All. The. Time.

In our never-ending quest to get our son’s challenging behaviors under control for extended periods of time, my husband and I, together with his behaviorist, tweak his protocol every so often. We hope, of course, to reduce the frequency of his tantrums. We’ve had moderate success over the past year and a half-- since Nov. 2012, Conor has averaged 31.5 days between bursts (some low numbers of 2 and 5 days between bursts and some high numbers of 55 and 80 days between). Essentially, he’s been averaging about 1 per month for awhile, with a few longer stretches. 

You can see notes where we've added or changed things in his protocol. We started the
Extreme Superstar Award on 12/4/2013. His behaviorist keeps the data for us, so I've got to give her props.

 The duration of the tantrums remains stubborn at an average of 50 minutes. This, of course, doesn’t count the almost-tantrums, which can be almost as stressful as the real thing.

Mario Buatta is known for his love of chintz.
He's famous for decorating for celebrities like Mariah
Carey. All I can say is… ew.
So, my hubby and I figured, if Conor really wanted to unleash his inner Mario Buatta, let’s use it to our advantage. If he didn’t have a tantrum for three months, we told him, he could re-decorate his bedroom. At Christmas. 

“Can he go that long?” his behaviorist asked, raising an eyebrow when I told her what we had done. “Has he done that before?”

“39 days,” I replied, “but he’s really motivated by a new ceiling fan.” (Ceiling fans are Conor porn.)

In hindsight, I can see it wasn’t really fair to expect him to go that long without a burst. Not without some support, a social story, a protocol, something in writing, a visual schedule or system that we all understood. Basically, a binding legal contract…with pictures and tokens.

This, of course, is what went running through my mind after his tantrum 60 days into the little impromptu experiment. Ok, ok, I’m not a behaviorist, I just play one in real life. I don’t always know what the hell I’m doing, despite having a behaviorist on the payroll for years. Yet we got 60 days out of it. 

But he failed. So I failed.

Conor earns the star at 8:30pm each night.
But he has to be on good behavior 24 hours a
day to earn the Extreme Superstar Award.
And thus, we re-grouped. We broke down the items Conor wanted into a list—new ceiling fan, 6-drawer dresser, rug, bed frame—and started yet another behavioral protocol. We wrote him a social story explaining that, if he went 30 days straight with no tantrum, he could earn one BIG item. This way, he can earn items that may be over his budget, that are extremely motivating, that encourage a longer-term focus.

I came up with the name "Extreme Superstar Award," inspired by competitive reality TV shows and his current protocol. It's really, really important that you flash some jazz hands when you talk about the protocol. Gives it that little extra pizzazz.

So this is the 5th layer of a behavioral protocol, if we don’t include the 5 point emotional scale. 6th layer? I don’t know, I’ve lost count. Token every 30 minutes to earn screen time, superstar token every 3 hours for earned outing twice a week, financial bonus for 4 consecutive days without a burst, perseveration protocol and budget protocol to address common triggers…egads. 

It’s giving me a headache just thinking about it. (I'm not even going to go into how we got from earning a new 6-drawer dresser to a hermit crab. This post is already too long. Suffice to say, the dresser arrived early but broken and he discovered a friend had a hermit crab. A HERMIT CRAB!!!)

So, there it is. That’s the story of how we wound up with yet another behavioral protocol and the promise to earn a hermit crab named Linda.

Let’s just hope I’ve had coffee, some bacon and eggs, and a good 30 minutes with the Sunday edition of the New York Times Magazine before he asks me for that spankin’ red hot Jeep Cherokee he’s had his eye on lately.

Yeah, Conor wants to know when he’s gonna be able to drive. 
Hold me.

Tuesday, January 07, 2014

Town Crier

Whereas, Conor had a Very Public Meltdown in the Game Room of T.F. Green Airport in Providence, Rhode Island, because of Plane Delay, and had to Abort the Flight Home from Christmas Travel To See Family, and Hence, spent More Than Ninety Minutes Thrashing his Mother In the Backseat of a Rented white Altima with his Wicked Tongue, Continually and Unremittingly and At Great Volume as His Father Drove South in Lashing Rain and Wind with White Knuckles on the Wheel of Steering.

and Further, Conor spent the Remaining Five And A Half Hours in the Rented white Altima happy and Asking to Snuggle with his Mom to Enable Sleep. She Declined to Snuggle. He Slept somewhat Anyhow.

Whereupon, arriving at Home, Conor Re-Commenced the Very Loud Meltdown in said Home as his Mother Dared! to Ask Him to Carry In his plastic Cup from the Rented white Altima, and As Such, Father determined to Sleep in the Room with Conor as Conor Stomped About and Screamed and Wished Daddy to DIE! DIE! DIE!

And Thusly, also Conor Demanded Quite Loudly to be able to Disrobe Completely and Sleep Naked. And to Poop within the Water Closet. (He Did Not Poop despite Vigorous Effort.) And Thusly, again, Conor Stomped and Screamed and Caterwauled Quite Viciously whilst Naked and Finally Settled in bed, with His Nakedness under the Covers and his Father's fully-clothed self most decidedly Above the Covers.

Sleep still Eludes Them at 1:33am as Monday Morning Commenceth hence.
I'm a crier.

You know, 'one that cries, especially,' according to Yahoo. (I love the 'especially'.) I admit it. I am. I really can't help it. I've always been this way, it's my nature.

I'm… sensitive. (It's ok, you can say it with a lisp and a high falsetto. That's cool.)

I cry when I'm tired. I cry when I'm angry. I cry when I'm hormonal. I cry when I'm sad. Except when I'm depressed. Then I don't cry at all. Weird, right?

I cry when I write sometimes. I'm crying as I sit outside my typical son's room so I can intercept a raging Conor before he has a chance to go in there and frighten the shit out of Aidan as he tries to get some sleep.

(Right now it's 1:33am, and I've been sitting on this stair step for so long now that my ass has fallen asleep. But it doesn't matter anymore--I can't tell if my ass is asleep or if it's numb because of the amount of Apothic Red I've consumed.)
Ok, it's not 1:33am anymore. I wound up going to bed at 2am, when Conor finally quieted down.

To continue--

This is Jon Cryer; he plays Duckie in Pretty in Pink
for those of you younger than 40.
You may know him as that inane character
on sex-obsessed Two and a Half Man/Children.
I cry, especially, when I'm frustrated. And man, I was more frustrated than Ducky on Prom Night when Blane takes Andie to the dance in Pretty in Pink. (Or, rather, doesn't take Andie to the dance, but gets her in the end anyway.)

I blame myself. My husband suggested we drive from Baltimore to Boston (and back, obvs) to visit family for the holidays. Seriously? Drive to Boston from Baltimore? For four days? (Two days of driving, two days of visiting.) Talk about your ass falling asleep.

I suggested the train. My husband hates the train. Too long but just as public as the plane.

So ok, I figured we could fly. Conor's a pretty good flyer, he loves to fly. We've taken him on Spring Break with no problems, and he recently completed a quick trip up and back to see the New Englanders already, so I figured it wouldn't be a problem.

I know, it was so unlike me, I hate flying with Conor, but there it is.

So… I buy the tickets, pack our bags, write the social story, hire a house sitter for the critters, and away we go. Fly up to Providence, Rhode Island (cheaper than Boston's Logan), grab a rental car, and head over to his cousins' house for our first visit. They live only 15 minutes from the Rhode Island airport, Conor loves it there, easy-peasy. Spend a few hours visiting and noshing. Great, he does great.

And, over the next few days, we drive from house to house to house, visiting aunts, uncles, cousins, grandparents, grandaunts, and catching up. We spent a lot of time in the rental car but also time in the pool, on the treadmill, drinking wine, and hanging out with family members. We even crashed one birthday party.

And he was great, he was doing really, really great. Usually our trips are filled with ups and downs and upsets and what not, but this time, he's really holding it together. So when I saw the weather forecast of a rainy, windy night on the day we're set to fly back home, I wasn't too worried. I called to see if we can get on an earlier flight, but we could not. All booked up.

No worries, I thought to myself. Stick to the plan.

My husband and I checked the flight status and the flight was on time, so off we went to the airport. I was a little cocky 'cause I signed up for flight status texts to be sent directly to my phone while my husband has to go to the website like a sucker. I could totally get the flight status like a boss. Two texts already, still on time. Yeah, baby. 'Cause that's how I roll. On. Time.

Rental car dropped? Check.

Bags checked at the curb? Yup.

Security? Like shit through a goose. Fast and smooth.

My husband took the kids for pizza while I sauntered down to the gate for the pre-boarding pass.  Yeah, you know the one, for pre-boarding when you have a family member with a disability, or a disability yourself.

"Hi," I smiled sweetly at the flight attendant behind the counter. "I'm traveling with a child with autism, and I was hoping we could get a pre-board authorization pass?" Big, dazzling smile.

I looked at the board behind her. Our flight's not listed. As I turned away, I asked, "oh, and the flight's still on time, right?" I mean, it has to be, right?

'Cause I hadn't received a text.

"Oh, no," she replied smiling sweetly back at me. "It hasn't left Chicago yet. De-icing now. It's pushed back an hour and a half."

Oh God. Suddenly, my phone buzzed. I'd gotten a text. From my husband.

Guess I'm the sucker now.

Down the hall, they came toward me. We had to tell him. I mean, we can't NOT tell Conor. The flight was at least 90 minutes late, if not more. So, we told him about the delay.

Let's just say it was not taken well. Fortunately, I was able to get us into the nearly deserted game room so we weren't out in the full view of every other pissed off passenger at the airport. One poor dad and his kid left quickly as Conor began screaming and stomping and wailing and such nonsense.

"You shouldn't scream like that," the kid said sternly on his way out of the game room.

"That's not helpful," I replied curtly as I went back to trying to calm Conor down.

Yeah, see, I can correct your kid AND try vainly to calm my kid down AT THE SAME TIME. Like a BOSS.

(This "boss" thing isn't working out for me. FYI.)

And so, we left. Our bags made the flight. We didn't. They wouldn't have let him on the flight like that anyway. I certainly wouldn't. My husband wisely told the Hertz counter agent that we had a 'medical emergency' (as Conor screamed and caterwauled in the rental car area), and, wow, did we get that white Altima rented quite quickly.

And that's how I found myself, in the back seat of a rented white Altima with a very upset Conor, trying to hold back the tears from yet another frustrating, maddening, saddening, exhausting almost-tantrum. I don't know, I have to take a lesson from my typical 11 year old or something. I saw Aidan almost crying and then, the next second, cool as a cucumber. Like nothing ever happened.

I've gotta figure that out for myself. Someday.