Tuesday, March 03, 2015

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.







Thursday, November 20, 2014

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?

Thursday, September 04, 2014

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.





Thursday, July 17, 2014

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.


Monday, July 14, 2014

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.

Monday, June 16, 2014

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?





Thursday, May 29, 2014

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?"