Tuesday, June 21, 2016

Things I Can Do


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

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

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

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


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

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

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

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


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

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

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



Monday, December 14, 2015

Release The Kraken

This is Conor when you deny a trip to the bank.
I'm thinking of making it our Christmas card.
This summer, I taught Conor about cashing checks at the bank, and oh my God, it’s like I released the Kraken. Rapidly, it became this seething ball of obsession and wanting and churning and angst and gnashing of teeth. 

At one point, I kid you not, he practically foamed at the mouth, demanding to go to the bank once or twice a day for increasingly bigger amounts of money. 

I blame myself. I don’t know what I was thinking. I should have known better. But it was the end of the summer, we were exhausted from trying to manage everything.

It all began with my brother-in-law and his wife giving Conor a wallet for his birthday last February. 
A wallet purchased from the bestest, most awesomest store on the planet, The Black Dog Store


Looks so innocuous, doesn't it?


It made me a little bit nervous, since Conor's so into money, but he delighted in putting a few dollars in it and paying for his root beer here, some french fries there, an ice cream cone or two. Then he started wanting more and more money, for buying baking mixes and pottery to paint, for purchases on his outings and bowling. Next thing you know, we're running to the ATM every day, and Conor wants to accompany us to the machine to punch in the numbers. It was all making me quite uncomfortable as he was becoming more and more Machiavellian about the whole thing. 

Plus, Conor yells out the PIN number as we’re typing it in, so there’s that. 

So, you know, life skill. I decide I’ll take Conor to the bank once a week to cash a check for what we use for his needs anyway. This way, in addition to keeping a little bit of privacy with our PIN, he’ll learn about budgeting, practice some social skills, understand the value of money, and what not. Teachable moments, right? That’s what this parenting thing is all about, I’ve been told. (I kind of thought it was about having a little minion to fetch your adult beverage of choice during the football game? But evidently it’s about this teaching thing.) 



Turns out, Conor thought the bank was just a big ol’ pile of free money for him to spend on this, that, and the other thing. Mostly he wants ceiling fans, sometimes French fries, perhaps the grocery store each day, birthday gifts for random people, often to throw a party. (I’m not kidding, he’s like a frat guy wanting a party every weekend with 50 friends. It’s a problem. He calls them “Activity Day Fests” like they do at school. He creates the menu, picks the venue, chooses a date, outlines the activities--swimming, outdoor movie presentation, corn hole--and then chooses who he wants to invite. He’s the Julie McCoy on our little Love Boat here.

I felt horrible, like I had put us back at where we were before he went on Kennedy Krieger Institute’s NeuroBehavioral Unit (NBU). This great idea of mine set off weeks of behavioral upsets, and he came pretty close to having a tantrum many times. See, Conor’s obsessed with buying things, and he was placed on a strict budget by the NBU behavioral staff before his discharge. It’s been incredibly helpful and effective, but also seriously difficult.

Conor’s constant desire to acquire items of obsession—baking mixes, pottery, puzzles, t-shirts, mugs--is like a candle burning inside of him for every waking moment. Money doesn’t just burn a hole in his pocket. It practically sets him on fire. So we manage his access to it very carefully. We try to balance what he needs to be able to operate as independently as possible with making sure you don’t turn the heat up too high on that fire. It would burn us all down. Truly.

Now, however, he’s moved beyond buying things, to being obsessed with the buying. It’s the transaction of the cash. If you’re craving fries at Five Guys, my teen is right there at your shoulder offering to hand your money over for you, counting it out carefully and slowly. If you need tampons from the grocery store, Conor’s your guy, ladies. He’ll help you out. Unlike most guys, he’s not skeeved out by the mere thought of you menstruating. Not if it means buying something.

Don’t worry, dear stranger, that teen hovering at your shoulder doesn’t want to steal your wad of cash. He just wants to spend it for you. He’s very generous with other people’s money.

For the most part, he prefers cash--fives, tens, and twenties. (Singles quickly get handed back to me. 
Singles are for chumps, evidently.) But he will swipe your credit card for you if push comes to shove. You know, if he has to he’ll use a credit card. 

It's true, we've had some success with the wallet obsession. He's demonstrated that he can communicate effectively (most of the time) to purchase the item he wants, can count out the appropriate amount of money, and knows when he's supposed to receive change. These are important skills for him to learn, and I'm not above using money to motivate him for these skills.

(Yeah, yeah, we're using money to motivate him to learn how to use money. The little money-grubber. The irony is not lost on me.)

My son buys french fries
independently at Five Guys.
We spend a LOT of money
on french fries. I'm not sure
which is more motivating--money or
fries!

If my teen with autism doesn’t have a tantrum for a week, I’m willing to give him a little more coin. It is what it is. Being more flexible and holding himself together emotionally and behaviorally is a lesson my teen with autism needs to learn. If an extra $1.50 in his pocket motivates him to not have a tantrum, so be it.

But utilizing Conor’s obsessive interests can sometimes backfire if you don’t prepare carefully. It’s very vogue right now in the autism community to regard obsessions as “passions” and to use them in crafting vocational opportunities and to soothe anxieties and behavioral upsets. On the surface, it sounds like a great idea, a positive one. And it can be. After all, if an individual “passionately” loves organizing items, they’ll be much happier and more compliant re-shelving library books by their Dewey decimal number rather than planting flowers in someone’s garden or doing janitorial work. And vice versa.

And if they need access to a preferred item they’re obsessed with because their sensory system is on overload, I completely get that. Like a salve that soothes a burn, indulging in an obsession can be helpful to some.

But with my son’s obsessions, it feels more like scratching a mosquito bite than applying a soothing ointment on a burn. Sure, it feels good at the time, and it can satisfy his itch at the moment. But then the bite just gets itchier and itchier and itchier, and you don’t stop him from scratching it more and more and more, and the next thing you know--it’s infected. And painful and swollen and green, with pus boiling out of it.

You get the picture. It gets ugly. It erupts.



We worked through it. We’ve learned. Once a week now, he and I sit down at our paint-spattered wooden kitchen table and put together a budget for the week. Day-by-day, Conor and I go through the calendar and look at what he’s got planned for that week—pizza night, athletic trainer, riding the light rail, Five Guys for fries, ice cream—and add it all up. I write a check for cash, and we go to the bank.

Then we sit back down at the same kitchen table and divvy up the cash, labeling each amount with its intended purpose. There are still kinks to be worked out. Currently, he’s struggling with his obsession for specific denominations, which drives him to withdraw more money than he needs. He loves $10 bills, so even though he’ll only spend $4 on ice cream once a week, he wants to withdraw $10. I’d like him to get the $4 out. He wants to use a $10 bill and “hand the change back.” 


My mistake wasn’t the idea of helping Conor to learn about budgeting and using the bank to accomplish the things he wants to do. My mistake was not thinking ahead, not thinking it through, not placing the appropriate parameters and boundaries for him so that he can successfully manage his obsessive interest. Conor needs those external boundaries to manage his obsessions because he simply cannot do it internally.


It’s a process. A negotiation. It’s getting easier, little by little, but I can’t say it’s perfect. I think we’ll be doing this dance for a very long time. 


For the love of money

Thursday, September 24, 2015

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 fiancĂ© 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.


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.