In 2012, 4 months after a 6 month stay at an inpatient NeuroBehavioral Unit to address his severe behavior, we tearfully told The Chef that his grandfather, Phil, passed away. We took him with us to the funeral. Despite bringing an aid with us, we quickly realized that we had made a mistake. There's limited space to grieve when you have to deal with behavior, to be frank. Phil deserved our undivided attention.
In 2014, my sister’s husband was killed by a drunk driver 2 days after Christmas. The maelstrom that followed reverberated for the better part of a year or more. It still does, I think, though more of a quiet hum that never goes away. We did not take The Chef to the funeral. We had learned.
In 2017, my sister-in-law’s husband drowned off the coast of Nantucket while on vacation. This time, we were able to attend the funeral before telling The Chef what happened. We snuck away for the service, with me flying up and back to Massachusetts the same day. After a few weeks, we sat down and told The Chef what had happened and helped him process it. We were learning how to cope. Though this, too, adds to the quiet but constant hum in our lives. I turn up the radio to try to drown it all out.
In February of 2018, on our 21st wedding anniversary and while my husband was hospitalized with a severe throat infection, my mother-in-law, Helen, passed away after a long, ugly struggle with dementia. We snuck away for the funeral, with me flying up and back to Massachusetts the same day. We waited 2 weeks before we sat down with The Chef and his behaviorist to tell him that his grandmother had died. He gave the ceramic box he had painted for Helen a few weeks before to his aunt.
27 days after my mother-in-law passed, my husband’s college roommate and best friend, Chris, died of glioblastoma, an aggressive brain cancer. We snuck away for the funeral in Boston, with me flying up and back the same day. We did not tell The Chef what had happened. We thought we could keep it close. We didn’t realize that he was texting Chris’ widow. We thought we were coping with it all, but clearly we were not. I turn the radio up even louder.
In 2021, the beautiful teenage son of a friend took his own life. A special educator, our friend had spent years and years coming to our home for a few hours each weekday to teach The Chef his ABCs and 123s. She brought her adorable toddler son and his big brown eyes to our home each day for our childcare provider to watch while she helped The Chef learn to read and write. The Chef had a crush on her daughter and wrote Vera’s name on our wall. Hearing of Ezra’s death at his own hands shook us to our core. We have not told The Chef. We do not know how. We can’t cope with that. I can’t. I don’t know how. They've lived on the opposite coast for years now, so it's manageable. I know The Chef texts our friends and asks about Vera and Ezra. In my mind, I whisper for their forgiveness.
And now,last Monday night, I told The Chef that my husband’s older brother died. He doesn’t know about Uncle Peter’s brave effort to survive COVID or that my husband wasn’t really golfing with buddies when he twice sped off to Connecticut for days without notice. He only knows that Peter’s brain had a stroke and that means that his brain got hurt. I don’t want The Chef to worry even more about “the big flu” as he calls it. I dial the radio up even more, adding a heavy bass.
I couldn’t make Peter's funeral. I couldn’t go up and back. COVID means flights aren’t as frequent or reliable as they once were. Bradley airport, Green airport, Logan International... nothing that would get me up and back in a day. I’m still struggling with that, despite the nice assurances family gives me. I don’t give myself assurances. I'm not that nice.
To cope, my son lit a candle. He wrote Peter's name in a photo book he made years ago that he calls his “Prayer Book.” (We don’t pray.) The book outlines the losses that we've had over the years with a narrative that he dictated. Next, he typed up a “sorry letter” to his aunt and ran off to shove it in a mailbox immediately. And then, he painted his widowed aunt a gift. He chose a mug with LOVE on it and asked me what else to write on it.
I don’t know, I thought to myself. I don’t know anymore what to write.
My toes are getting uglier," I lamented to my husband, pushing my foot out to show him while we watched The Sinner. (Great show, btw. Jessica Biel, who knew?) I haven't had a pedicure in months.
"Not as ugly as these toes," he replied, showing me his own. He hasn't had a pedicure ever.
I mull this over, man vs. woman. I don't get my nails manicured and I think it's ugly. He doesn't think about his nails at all. I feel unkempt and a bit avant garde with my brown and grey landing strip in the middle of the blonde hair, a sort of natural, unexpected balayage. His curly hair just gets curlier. He pats it down. He doesn't think about his hair much either.
Nothing is as it's supposed to be. The Chef aged out of the school system on June 10th, and for years I'd worked so hard, so hard at putting all the pieces together. He was accepted into the adult day services program of our choice. I felt something tight let go in my chest when that happened. A school year with only one snow day and acceptance into a great program? Sham-WOW! I nearly broke my arm patting myself on the back as I cried tears of relief.
For a number of years, I've been in a race to get my son set up for an adult life independent of us. In the past 6 years, we've had two brother-in-laws die unexpectedly and tragically, and my husband's best friend fought brain cancer for almost 2 years before he passed. A colleague of mine on a nonprofit board and her husband were killed in a car crash, leaving their disabled son in a group home. Thank god, I thought to myself, that their son was taken care of before that accident happened. But now, as I push the button on the washing machine every morning to launder the face masks we've used the day before, I feel unmoored.
Everybody has something, my father told me. (In my family, you don't sit around and feel sorry for yourself. You get your ass up and deal with things.) But my something feels particularly heavy right now. I don't know where to turn or what to do. I guess none of us do.
The Chef doesn't want to leave school. He's refused for years to acknowledge that he's "graduating." We knew the transition would be fraught during the best of times. Great, I thought to myself when we learned where he would go. Now we can tell him where he's going and that he'll know people there. We'll be close and able to manage things. He'll have some continuity with his vocational work from school but also experience new opportunities.
Oh, I'm sure they'll open up again. Of course things will. We can't do this forever. I mean, can we?
While I've been impressed with the flexibility and patience he's demonstrated so far (thanks to increased meds, hard work by our behavior tech, and some creative thinking on our part), it's been a strain. He's regressed, mostly in his life skills.
He wants mommy or daddy to do everything for him. Instead of showering independently, he demands a bath every night. I have to lay down with him every night to get him to sleep and then he still crawls into my bed in the middle of the night. Getting him to brush his teeth is a struggle.
I spend my days programming for The Chef with the limited outings we're allowed. We go to Target, to Wal Mart, to the post office. We bake and drop off muffins and cookies and pies and cakes. We drive 45 minutes for ice cream because what the hell else are we going to do? Masked and gloved, armed with bottles of sanitizer, standing 6 feet away from everyone, we do what we can.
On my downtime--what little there is--I try to figure out how we're going to tell him that he can't go to Busch Gardens this summer or to the fireworks or sleep away camp. I have to tell him sometime soon that he's not going back to school.
Sleep away camp really hurts the most, to be honest. It's our only family respite time and I cherish it every year. He's 21 now and next year he'll be too old to go.
The best laid schemes o’ Mice an’ Men Gang aft agley, An’ lea’e us nought but grief an’ pain, For promis’d joy!
"It's November!" The Chef exclaims as he rushes in the door, the wind gusting around him as his 1:1 aid trails close behind. "I want to talk to Mom. Mom! MOM! IT'S NOVEMBER!"
"Yes, it's November, Conor," I mutter. He whooshes by me to throw his backpack in his cubby. I sigh. My 17 year-old son with autism and mild intellectual disability pronounces that it's November almost daily, several times a day because, well, it IS November after all. And he's been waiting since Labor Day to talk about, and plan for, the Christmas holiday.
I put the kibosh on the pre-Halloween Christmas talk a few years ago. Other than one of my aunts--who is prone to finishing her holiday shopping in July, good Lord--Conor is the one person that I've met that loves Christmas more than Santa and his seven dwarfs. (Wait, that's Snow White, isn't it? The dwarfs? Elves? Toddlers? Whatever.) If it were up to him, we'd start planning Christmas on December 26th every year.
Now, if you know me (and you probably do because only my family and the people my mother pays to read my blog posts will see this, I'm sure), you know that I like to be organized. Not in a "I'll-cut-you-if-the-sugar bowl-is-out-of-place" kind of way, but more like "if-I-have-to-look-for-your-car-keys-one-more-time-I'll-scream" kind of way.
So believe me, if it worked for us, I'd love to have Conor organize his Christmas way in advance. Being organized helps manage his anxiety, his expectations, and, thus, his behavior. The autism trifecta. We make lists and calendars, visual reminders and travel trackers, social stories to explain things (everything, really). And we even have an inventory of his unpainted pottery items. (Don't ask. Long story. I practically need supply chain management software to keep track of all the pottery.)
But when it comes to Christmas, my son is like a balloon. He can start out quietly, calmly asking about making a list or trying to talk about what he wants for Christmas. Discuss who is going to be at my parents' house on Christmas Eve and what he'll do the next day. It may be July, but ok.
In the past, I have acquiesced and let him dictate a list for me to send to Santa Claus and his 27 Garden Gnomes in July. And that would be the end of that, you might think.
Oh no, my pretty. That's not the end of that. Because that list then starts to fill this Conor balloon with air. He doesn't want to wait until December to get his gifts or to buy gifts for us. Waiting is hard. Sohard.
And that list--it puffs and puffs, and it blows the Conor balloon up until it's bursting and ready to pop. It fills that balloon with what I call "exciety", where he's just so excited about Christmas day and what it might bring that it creates a tremendous amount of anxiety because it has to be just the way he's thought it to be. (By the way, I've just come up with that term 'exciety', and I am so calling my attorney in the morning to trademark it. I'm going to make a fortune, I just know it.)
Where was I?
Oh, and the next thing you know, you're facing a 17 year-old man/child having not just a cow but a whole herd because you won't buy him the $300 18,000 piece Ravensberger puzzle he asked Santa Claus and his 56 Toddlers for, and it's only the day after Labor Day.
This is #notaballoon. Someone's
#gettinjiggywithit in the great outdoors.
Except we live in the city.
So that's why I make him wait until November to even talk about Christmas. It makes for a long holiday season if your kid's level of exciety about Christmas is just as high on the Fourth of July as it is at Thanksgiving. It keeps you on pins and needles. And we all know that pins and needles aren't good for balloons.
For too many years, my kid's Christmas balloon has popped, leaving him, us, and everyone around us exhausted, limp, and deflated. Kind of like this condom I found left in the leaves below the oak trees that line the street in front of our house.
Come to think of it, pins and needles aren't great for condoms either.
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.
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 thebestest,most awesomeststore on the planet, TheBlack 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
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
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.
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.
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.