I Hate Your Kids

...and other things autism parents won't say out loud.

[ihateyourkids]

Recently I found myself in one of those rare situations when I have the sofa all to myself and my brain is quiet enough to entertain the possibility of something longer than a Tweet.

It usually plays out the same way:

1. I decide to watch a show.

2. I feel excited about this prospect.

3. I turn on the TV and see how many choices I have and become immediately overwhelmed.

4. I scroll and scroll until my attention span reverts to its pea-sized default mode.

5. I shut the TV, open my laptop, and start shopping for reading glasses or something.

This time, though, right before my eyes glazed over, I remembered my friend Dori telling me about an Israeli show called On the Spectrum that had just started streaming on HBO Max.

I'd pretended to be enthusiastic when she mentioned it, but I hadn't really planned on watching it. I'm generally allergic to autism content, and just the title of this one alone was enough to give me hives. Then there was the premise: Three autistic adults sharing an apartment. It sounded very Friends-meets-Atypical to me, so yeah, thanks but no thanks. Also, like most programming in this category, it features people on the high-functioning end of said spectrum. There’s nothing wrong with that, per se, but in my opinion it just makes the rest of this population seem even more invisible than they already are.

Still, I wasn't ready to give up on immersing myself in something for an hour or two. Besides, I trust Dori’s taste, I’m weirdly partial to Israeli TV (One word: Shtisel), and with just ten episodes coming in at around thirty minutes each, it was not a big commitment. So I went for it, clicking my way through the Apple TV screen with confidence and purpose, like I'd actually just accomplished something.

I’m happy to report On the Spectrum did not send me into mental anaphylaxis. In fact, quite the opposite. I loved every second of this freaking series, which expertly blends all of the regular 20-something roommate stuff (friendships, fights, and not one but two highly-trafficked coffee shops) with Zohar, Ron, and Amit’s specific challenges.

Either unwilling or unable to mold themselves to fit into a world they don't always understand and vice versa, they bungle job interviews, get arrested, and have awkward and potentially dangerous sexual encounters. It also deals with questions I’m sort of obsessed with now that Benjamin is about to turn eighteen, like what is the right amount of autonomy to give a person who will always need support, and how can you maximize a person’s agency (and therefore their dignity), while also doing your best to ensure they don’t capsize? It's heavy and funny, and like all great TV, never predictable or overly sentimental.

There was one thing I found jarring, though, at least at first, and that is the total absence of parents. “Where are they?” I practically screamed during some of the moments when our friends needed them most. We do know where they are (Ron’s parents are in San Francisco, Zohar's died when she was a teenager, and Amit's dad is local and available for the occasional lunch), but we never see them. We don’t even hear their voices on the other end of the phone line.

At first I kept waiting to meet them, whether at lunch or on the phone or in a flashback, but soon I was able to accept their relegation to the wah-wah Charlie Brown grown-up zone. The characters have advocates (Yaeli, their counselor and Zohar's brother Asher) who are always stepping in to help, which helped me relax a bit. Then, about mid-way through, I understood that keeping parents off-screen was a decision, and a pretty brilliant one at that.

We tend to put ourselves at the center of our kids’ stories. Sometimes it’s because it's truly what they need, and other times it's what we think they need. It's also true that sometimes we do it because it's what we need.

It was refreshing—a relief, even—to spend a few hours by myself on the sofa, feeling sidelined, erased.

[ihateyourkids]

The perfect pandemic pet

As far as I know, there has been exactly one non-terrible news story to come out of this pandemic. It’s the thing about how dogs are killing it right now. Apparently they’re getting adopted left and right, and, because their owners are around all the time, they’re happier than ever. Yay dogs! Like everything in the media these days, though, even a benign, sunny story such as this one has the potential to be weaponized. I know this because it has been--by my 10-year-old daughter.  

Annoyingly, the coverage has totally reinvigorated her dog campaign, which she launched around the time she learned to speak. There is now a Powerpoint presentation. 

I don’t want a dog, for lots of reasons, and we ended up getting her hermit crabs. A lame substitute, I know, yet, also, in my opinion, a very appropriate pet choice for these hermit-esque times. She named them Aang and Zuko after characters on The Last Airbender, and while she hasn’t let go of her dog dreams, she is quite fond of the little, endearingly creepy guys. 

The other day, while on a break from Zoom school, she rushed downstairs to refill their water dish and forgot to replace the top of their tank. 

I would have called her down to fix it, but she was already back in “class.” I also could have done it myself, but I did not. I was feeling lazy, and I also wasn’t very worried they’d escape.  

While the crabs had been able to scale the plastic walls of their previous enclosure, their new and far more spacious home was made of glass, which they couldn’t climb. They'd spent a lot of time hanging from their old roof and we felt badly this was no longer possible. To make up for it we’d bought them a blue plastic climbing stick specifically marketed for hermit crabs, but it was too short and not very sturdy. Most of the time they knocked it over, but even when they managed to climb to the top they’d just sit up there, their beady eyes staring longingly, it seemed, at the ceiling.

When I finally walked the ten steps it took to get to the patio where we keep them because they need humidity to thrive, I realized there was only one crab inside. I wasn’t sure if it was Aang or Zuko that was gone. I can never remember who’s who, even though their shells are different colors.

I was dismayed, but also a little impressed. How had he done it? I scanned the surrounding area but there was no sign of the crab. I suspiciously eyed a fat lizard, but really I knew it was just pregnant.   

“He’s dead! I know it! And it’s all my fault!” Ayla wailed when I called her down to the scene of the crime. We continued our futile search around the backyard. 

I felt badly for Ayla, and also for the other, remaining crab (Zuko, it turned out). Apparently, hermit crabs are very social creatures. Mostly, though, I was worried there would be an even stronger push for a dog.

I picked up the tipped-over climbing stick and used it to gently dig around until lo and behold, I struck shell. There was Aang, burrowed comfortably in the special soil we got at Petco--hiding out instead of roaming around the dangerous, increasingly overwhelming world. 

Ayla implored me to cover him back up and leave him alone.

“He’s probably molting,” she said, which made a lot of sense. 

[ihateyourkids]

The Quarantine Diaries, chapter one: All the Good Things

Listen, I know the last thing the world needs right now is another account of what it’s like being stuck inside, homeschooling a bunch of kids. If you’ve seen one picture of a child with headphones doing online learning, you’ve seen them all. Same goes for the shots of homemade baked goods, preschoolers doing downward dog, and sketches inspired by Mo Willems' (admittedly adorable) Lunch Doodles. 

Our instagrammable moments of late are boring (or, at least, more boring than usual). Which makes sense. Underneath all of that suffocating, pervasive anxiety, we are bored. 

The other day (I think? what are days anymore?) someone on Twitter called pre-pandemic life the “Before Time,” which was just so funny and creepy and perfect. Anyway, I’ve been thinking about how while in the Before Time our online sharing was heftily driven by narcissism, it’s different now. It’s still partly that, of course, but it’s something else, too. Right now putting ourselves out there feels necessary. It’s a way to feel less isolated, a way to process the weirdness. 

The images we’re choosing to share are, as usual, far from accurate representations of the whole picture of our quarantined lives. They don't capture the marathon-vibe of the days and the fighting and the soggy towels piled up on the bathroom floor (and if they do, even that’s curated). But right now we kind of need to pretend our lives look a certain way. Otherwise we might go crazy. 

I’d be lying if I said I’ve spent more time this week thinking about the things I’m grateful for than the things that are freaking me out. But in the spirit of not going crazy, I think I’ll choose to write about the former. I guess that means this is technically a gratitude list, which is something I would have seriously rolled my eyes at a week and a half ago. But what can I say--things change. Like every single day. Drastically. 

So here goes, the top six things I’ve been grateful for during the Covid-19 quarantine. It might be boring, but it’s all I’ve got.

1. Benjamin’s good mood. This is a kid who goes through some pretty stormy, anxious periods, and is especially triggered by changes to his routine. He’s been super chill lately, though, and all I can say is I couldn’t have asked for a better way to go into a global pandemic. He still requires an incredible amount of structure and supervision, but he has been following his schedule easily and laughing a lot. 

As his therapist reminded me over text yesterday, it’s only week one. Things will likely get dicey at some point, but I’m just going to live in the moment, as those gratitude list-types like to say. (In all seriousness, though, my heart hurts for all of my fellow special needs families who are suddenly without the support they utterly rely on. It’s impossible for regular people to understand what it will be like to go without the school programs and services that provide structure, education, and respite, and there’s just no way to spin that.)  

2. Those other two kids. It would be rude not to include them, and besides, they’ve been very good, doing their school work and chores and sometimes acting like friends. The other morning they came downstairs wearing the same shirt, not on purpose. 

3. My husband. It would also be very rude not to include him. I know this because he said so himself. Really though, his work is putting him through a high-stakes, pressure cooker brand of stress I’m totally not built for, so it’s highly impressive to see him handling it calmly, and working like a maniac around the clock. (From home. Yay!)

4. Technology. Between Zoom, FaceTime, and check-in texts, for once being overly connected feels like it’s going to save my life, not ruin it. 

5. Space, especially of the outdoor variety. This is probably the first time I honestly feel truly grateful to not be living in New York City.

6.  The beach. Okay, so since I started writing this the beaches have closed. But at least the beach path, where we can walk and bike and see the ocean, is still open. For now. 

[ihateyourkids]

It’s not what you say, it’s how you say it

The other night I went into Benjamin’s room to put on Inside Out, the 2015 Pixar film about the drama going down in the mind of a young girl. It’s a cornerstone of Benjamin’s bedtime routine. Without exaggeration I can say he’s seen it at least two thousand times. 

We were sitting side by side at the edge of his bed watching the TV flicker on and fill up with a glowing Apple TV cityscape, when I realized there was something I really wanted to know.

“Who is your favorite character in Inside Out?” I asked.

“Inside,” he said, which was pretty much along the lines of what I’d expected him to say.

It’s not that I doubt Benjamin has a favorite, but I understand that his autism makes it difficult for him to process abstract questions and even more difficult to access his answers. Usually I would have dropped it or changed the subject, but for some reason I kept going.

“I mean, who is your favorite person in the movie?”

“Person.”

Okay. I took a second to try to find another way. “No, I mean, which is your favorite emotion?”  

“Fear.” He said it without missing a beat and so confidently that I thought I might fall over.

“Wow, yeah, that’s a good one!” I said, even though I haven’t seen it in years and didn’t remember a thing about Fear. Even though I was so giddy it took massive amounts of self-control to manage my emotions and not do a crazy happy laugh and tell him how awesome he is. I didn’t want to seem patronizing.

There were so many other questions I wanted to ask, like why he likes Fear the most and what in real life makes him feel afraid and if he was beaming and giggling at that moment because it felt amazing to share information that went beyond the regular, concrete grocery list fare. 

I didn’t want to push it, though. I hope I get to those questions one day. If I do, I’ll remember to be very careful with my words. 

[ihateyourkids]

Good listening

“Can your child follow one-step commands?”

This is a question I’ve been asked many, many times over the years. It’s a staple on the assessments Benjamin’s schools and camps and psychologist-issued evaluations use to gauge where he holds developmentally. If you answer yes, the next question will be about his ability to follow two-step commands, and so on.

For a long time, during the period when you’d tell Benjamin to, say, get his shoes, and he’d totally ignore you and you’d hope it was out of defiance because that would be so much better than a vast, unconquerable comprehension issue, I hated these questions. 

But that’s all in the past. These days you can say, “Hey Ben—run upstairs and get your sneakers. I think they’re in Zack’s room,” and presto, without any pause or explanation or prompting, the sneakers appear.  

That said, as great as he is at following instructions (which is to say a lot greater than other people who live in my house), if any of these assessments had a question that asked if my child would be able to listen through the door of the bathroom he’s been locked inside for twenty long, sweaty, adrenaline-flooded minutes, and follow a complicated, multi-step command laying out how to re-attach the door handle in order to free himself,  I think I probably would have said no.  

At least up until yesterday. 

“I wish one of us had taken a picture of his face when he opened the door,” said our friend Joey, who, within six minutes of receiving our early-morning text came over with his tools and skills and therapeutically calm demeanor.  

Unfortunately we missed the moment, but I like to think it looked something like this:

[ihateyourkids]

Blackouts and birthdays

A little over sixteen years ago I woke up and decided I was too pregnant to go to work. Yes, I was huge and exhausted and my ankles were so swollen it looked like my calves went straight into my feet, but I could have gone in. Instead I decided to elevate my crazy-looking legs and spend the day researching baby gear and reading stay-at-home vs. work-out-of-home mom smackdown threads on parenting message boards.

It turned out to be a weirdly prescient decision. At around 4 PM the entire city--and many other cities and towns across North America--lost power. During the blackout, while Moshe bar-hopped his way down the length of Manhattan, eventually crossing the bridge into Brooklyn on a borrowed bike, I sat on the roof of my building paying close attention to my body for any signs of labor. I was due in just a couple of weeks. 

It was scary, figuring out a birth plan alone in the dark, but it was also a little bit thrilling. Going early would mean I wouldn’t have to sit around waiting and waiting and waiting, feeling gross and anxious because there is nothing more unnerving than not knowing exactly how and when everything is going to instantly shift, or how you’re going to feel or what it’s all going to look like. You can go online and talk to people and gather up as much information as you possibly can, but it’s all just words. It’s impossible to picture this person you haven’t yet met, to know how he or she is going to change you and your whole life. Before you’ve lived it it’s all just murky outlines, like the city that night.

I didn’t go into labor for another three weeks, and then only because I was induced. I pushed for hours with no results because the baby was face up. Apparently downward facing is the standard direction. The epidural ran out right before the gazillion-year-old doctor busted out the forceps and in the middle of all of it my mother-in-law knocked on the door with cookies for the nurses. 

I haven’t experienced another grid-based blackout like that one in August 2003, but there have been many, many times the immediate future has felt concealed by that same kind of darkness. When I could never have imagined what was going to come next or how things would turn out. Those unlit moments often feel just as scary and thrilling as that night on the roof, when my flip phone was slowly dying and I wondered how I’d get to the hospital and I met neighbors I’d ridden the elevator with before but had never spoken to. When the whole city was suspended and quiet and connected. 

All that to say, happy 16th birthday to Benjamin, who has taught us how to adjust our eyes and be patient about the stuff we don't yet know or understand. 

[ihateyourkids]

When dinner gets trashed

Benjamin plans out our weekly dinner menus. This, in many ways, is very cool. I love that he has an opinion and a voice, and that he’s helping me stay organized. The downside is he has a rotation of exactly six meals, and not everyone in my house likes every single one of those meals and even if they do, they don’t necessarily want to eat them week after week after week. Also, he becomes overly focused on this part of our routine, which means he talks about it (what we had yesterday, what we’re having that night, what’s up next, plus the groceries necessary for preparation) incessantly, and if anything doesn’t go exactly as planned he gets really upset. Sometimes really upset is just like it sounds, and other times it’s worse than that.

On regular week nights I can pretty much deal, since his rotation (turkey tacos, pizza, pasta bake, beans and rice, and hamburgers, all with a side of roasted broccoli or cauliflower rice) is relatively nutritious and there’s usually one component I can adapt for an unenthusiastic customer. The problem is Friday night, when we have this big Shabbat dinner which involves a detailed list that always includes things I really don't want to make, either because they’re too much work or too unhealthy or both, or just: Enough already.

Last week was his first Friday night home since returning from camp, and because I’m nice and also an idiot, I made exactly everything he requested, plus I bought a birthday cake for Moshe. It was lovely, but not without repercussions. Let’s just say there’s been quite a bit of chit chat about steak and deli roll and challah dough and chicken (deep fried!) and cookie sticks and, obviously, birthday cake over the last several days. The only thing that got me through was knowing Tracy was coming over Thursday night.

In case you haven’t read about her here before, Tracy is our behaviorist. She’s an excellent behaviorist, the kind who really observes and hears you and rapidly assesses the situation before coming up with strategies that are simultaneously simple and genius.  

Her plan for Operation Shabbat was to...make another list. But instead of letting Benjamin dictate the whole thing, we would do it together.

First I wrote down three things I wanted to include, and then Benjamin got to choose three items from a pre-written list that had some, but not all, of his greatest hits.

Nobody was surprised when he wasn’t very excited about this, or when he tried selecting things that weren’t options.  

“Eight,” he said, pointing to the list we’d presented to him. It had seven choices.

He was pretty persistent about adding the things he had in mind, and it was unclear if he didn’t understand the whole concept, or if he was just trying to tell us to get with the program. His program. Eventually, though, he accepted it and picked his dishes and had a super cheerful, non-anxious night, which meant I did too.

This morning he bounded downstairs, fully dressed for school, while I was still drinking my coffee. He immediately started in, a shade stress-ily, with the original, not-happening menu he’d come up with on his own.  

The familiar dread started to creep in, but then I remembered Tracy’s advice and I redirected him to our collaboration. Except it wasn’t on the counter, where I’d left it.

“Hey Ben, where’s the list?”

“Garbage,” he said, without missing a beat.

He’d balled it up and hidden it in the recycling bin so well I couldn’t find it, but at least he was nice enough to fish it out for me from underneath the pile of broken-down cereal and cracker boxes.

I smoothed it out and we practiced reading it again. 

[ihateyourkids]

Five things I’ve learned about camp

My kids are away at sleep away camp. This means the fridge has four things in it, I can carry the laundry upstairs in one hand, and I’m all caught up on TV. It might sound lonely, but it’s not.  I’m very relaxed. Like, yoga retreat plus Transcendental Meditation plus Xanax relaxed.

There’s only one even vaguely stressful thing in my life right now and it turns out it’s exactly the same thing I find stressful during the school year: My children. 

It’s annoying, not knowing how they’re doing. I mean, on a macro level I know how they’re doing. I haven’t gotten a call, which means nobody has broken a bone or set fire to anything or is debilitatingly miserable. The micro piece, though, is trickier.

For specific details (are they happy? clean? social? liking the food? into the activities?) I rely on two main avenues of information. The first is the camp website, where photos are routinely posted. This source, as I’ve previously noted, is problematic. The pictures are majorly lacking in context and capture only a tiny percentage of a camper’s day. Sometimes there are no photos. It’s all very crazy-making.  

The next best way to find out what the F is going on over there is via letters. This, I’ve also noted, is problematic too. It’s hard to gather facts from mail that has never arrived.

Ayla is currently spending her first full session at camp. Because the boys don’t write, I wasn’t expecting much from her. I certainly wasn’t expecting to hear from her nearly every day, but we do. Sometimes we get two letters at a time. She has requested more stamps.

I can’t say she’s giving me nearly as much intel as I’d like, but communicating with her in this old-timey, delayed way isn’t nothing. In fact it’s a fascinating little window into her young mind.

Here’s what I’ve learned so far:

1.     Ayla misses us, although it’s getting better. Now “I miss you” is not the only thing she says, and she’s stopped drawing frowny faces.

2.     “Some of the girls in my bunk are rude, some are okay, and some of them are nice.” So basically camp is like everywhere else.

3.     She has read all of her books and would like us to send more.

4.     She’s learning about the strange and confusing nature of time: “Dear Mom, It hasn’t been a long time [since I arrived] but it feels like years.”

5.     I ask too many questions and I should relax even more if that’s humanly possible and stop worrying and refreshing-refreshing-refreshing the photo page because really, everything is fine. 

That’s what “P.S. You should chill out,” probably means, right? 

[ihateyourkids]

Out of Order

There are a few ways Benjamin enjoys listening to music in the car. Lately it needs to be streamed through my phone via Bluetooth. Annoyingly, my iTunes library is currently set up so that when you play an album the songs are all shuffled. I’d like to fix it, as I prefer hearing albums in their intended order, but I haven’t, a little bit because I’m lazy and a lot because it’s not bothering Benjamin.

This is unusual (Benjamin’s flexibility, that is, not my laziness). He’s hyper-sensitive to even the smallest changes, including, and maybe especially, in the car. It’s not uncommon for at least some hell to break loose if the A/C isn’t set to exactly the same temperature in both zones, his seat belt is twisted, or his mobile breakfast doesn’t include a (non-vegan) cheese panini on olive zaatar bread wrapped in foil, accompanied by a paper towel folded just so. The fact that he’s not deeply unsettled by the jarring nature of a jumbled soundtrack is something I need to encourage and probably celebrate. So I’ve kept it this way even though it drives me crazy.

Yesterday on the way to school he asked me to play The Beatles’ Abbey Road. Near the end of Polythene Pam I braced myself for the abrupt cut off that was about to happen. It’s not my favorite song, but my favorite part of the album is when it escalates and merges with the beginning of She Came in Through the Bathroom Window, which is my favorite.  

At the final crescendo, right before the anticipated break, I started singing the words we would have heard if the order was right. 

“She came in through the bathroom window! Protected by a silver spoon!” I belted out karaoke-style, taking advantage of the fact that Zack wasn’t in the car to panic over the totally likely possibility that we’d pull up next to a friend from school and they’d see me and my voice would magically transmit to their car. 

Benjamin wasn’t embarrassed. He got it, which I knew because he made eye contact in the rearview mirror and smiled.  

Of all the parenting cliches, I think the truest one is the thing about how you’re only as happy as your least happy child. In my case I’m only as happy as my most aggressively anxious, obsessively perseverative child. When he’s flexible and calm all is good in the world. When he isn’t, I don’t feel so great. 

I can empathize with Benjamin when he demands that particular details are executed in a  particular way, and when he loses it because they haven’t been. But I can’t fully understand the depth and complexity of his rigidity and I don’t know that I ever will. Our brains just work so differently. 

In that moment, though, we were on the same wavelength--both very aware of the way the mixed-up order was making us feel, but able to tolerate it. Maybe there was even some excitement and not entirely unpleasant suspense in waiting to hear what the algorithm, or whatever it is that dictates the shuffle feature, would bring us.

When the next song came on he asked me to switch it back to the Polythene Pam and I did, but then he whined, indicating it wasn’t actually what he wanted. He said a couple of things I couldn’t decode and then, finally, “Window.”  

I obliged and we both sat back and enjoyed the music, the way it was supposed to be heard.

[ihateyourkids]

Friends

We have a no phone rule in the car, but Zack and Ayla and I were waiting forever for the drawbridge to go down (#floridaproblems) when I remembered I’d been meaning to show them a shot Benjamin’s teacher had posted to the school communication app that day.

 It’s of Benjamin and one of his classmates. Apparently he’d asked for a hug. 

“Aw, Ben has a girflriend,” Zack said.

“No, it’s more like a girl who’s a friend,” I said, which the three of us understood was no less sweet or monumental. Benjamin has basically never befriended anyone in his peer group. He connects mostly with adults who are either super intuitive or have been formally trained to get him. 

“Zack! I think Ben’s in the friend zone!” Ayla said, and they laughed in the most generous way, and just like that their big brother was included in one of their dumb, long-running inside jokes. 

[ihateyourkids]

The vegan cheese didn’t work out so well

Most weekday mornings I make Benjamin the same thing for breakfast: A cheese panini on olive zaatar bread. I cut it in half and wrap it in foil (details you would surely learn if you were ever to ask Benjamin about his breakfast). Then I place it on the floor next to his backpack, on top of a folded third of a select-a-size paper towel. 

He eats it in the car, washing it down with everything in my purple one-liter water bottle. When he’s done, he scrunches up the paper towel and foil and backhand tosses it into the trunk, which he apparently sees as a large trash can. I’m working on that. Or at least it’s on my list of things to work on.  

The other morning was a morning like all other mornings, except instead of driving to a school he’s attended for seven years, we were driving to a school he’s attended for seven days. New route, new building, new teachers, new students. 

Overall he’s doing great there so far. I’m not sure if he’s using everything he’s got to hold it together in the face of this vast, profound newness or if he’s truly enjoying himself, but I’m very proud of him. A person can only take so much world-rocking change, though, and it is my opinion that he's compensating by trying to make sure every other detail of his life remains completely controlled and predictable. With Benjamin this manifests in constant, anxious list-making. Grocery list-making.

When he’s in this mode I become very conflicted. Like, part of me wants to honor him and grant his request to, say, go to Costco on Wednesday and buy the same things we bought at Costco last Wednesday, but part of me knows this is a bad idea because then, next week, likely as early as Sunday, he’ll start in again with the Costco talk.

“Mommy car Costco. Croissants. Blackberries. Raspberries. Strawberries. Pirate’s Booty.”

He’ll say it five thousand times, sometimes dictating the list so I can write it on a dry erase board (write, erase, rewrite—so much fun!). When that gets old he’ll type it up on my phone’s Notes app, but only if I’m there to listen to him read it aloud and then reread it for him. 

Honestly, I wouldn’t even mind the crazy-makingness of it all if the repetition actually soothed him. But it doesn’t. He becomes increasingly tense, a little more with each list, until the actual trip happens. Then he’s good. Until it starts up all over again. 

I know I should redirect him by, say, acknowledging that yes, there is a store called Costco, and they do sell croissants and blackberries and raspberries and strawberries and Pirate’s Booty, and going there is so much fun! I’d leave it at that, without promising a trip, because I want to make him more flexible, and also because while the berries really do go quickly, our home can only contain so many one-ounce bags of Pirate’s Booty. Which, for the record, BENJAMIN DOES NOT EVEN EAT.

The other night I noticed there was no shredded cheese. Right away those two alternating voices started battling it out in my brain. My first instinct was to run to the store so the morning would be as smooth as possible, but then the other voice said, “Just use that objectively gross vegan cheese you picked up today at Whole Foods. The packaging claims it melts! It will be fine! Change is good!” 

There was a much quieter voice, too. It said, “I am tired and I don’t want to go to the store.” She was very convincing. 

So the other morning was different from all other mornings because Benjamin was going to a new school, and also because his panini must have tasted like plastic. 

I watched him closely in the rearview mirror, holding my breath. One bite in he made a whining noise and his face scrunched up in a way that suggested not just aversion, but a real physical reaction. One eye was watering, and appeared  swollen. Had I glossed over the ingredients too quickly? Was this stuff gluten and dairy and soy-free, but not nut-free? Not coconut-free? Benjamin is allergic to those foods.

At the next red light I switched off my phone’s do-not-disturb setting so I could perform some emergency Googling. I pulled up the ingredient list, which looked entirely veggie and chemical-based, i.e., safe. Meanwhile, Benjamin continued to eat, not out of enjoyment (obviously) but like he was on a mission, taking bites so big I was nervous he’d choke. When I pulled over to let Zack and Ayla off at school I inspected him for hives. He did not have any, and his eye no longer looked swollen. It had probably just been a disgust-induced squint.

“We need shredded cheese!” He bellowed as the car started up again.

“We do!”

 “Kosher Kingdom, shredded cheese!”

 “Yep!”

 “Mommy car Kosher Kingdom shredded cheese!”

“It’s on my list—don’t worry.”

 “Cheese throw out!” He said, making the motion one would make if one were pouring the contents of a bag of vegan cheese into the trash. Or my trunk.

 Okay fine. Point taken. 

Change is good most of the time, but not always.

[ihateyourkids]

Fresh start, new shirts

We went away this past weekend. It wasn’t until we were on our way back from the airport that I realized, with a sinking feeling, that I’d forgotten to complete an important item on my pre-trip to-do list.

“The shirts!” I said to Moshe, slightly less panicked than I’d have been if I wasn’t just emerging from a travel haze. “I forgot to get rid of them!”

We’d explained to Benjamin he was starting a new school. We also reviewed with him the thoughtful and impressively well-designed social story his new teacher put together. But we knew the torrent of preparatory words and images would all melt away in the face of the tangible fact of the navy polos he’s been wearing most weekdays for the last seven years.

Benjamin is both predictable and organized. The first thing he would do upon arriving home would be to locate his iPad, click on a cooking video, and blast the volume. The second would be to stack on his chair his clothing for the following day—grey pants, black socks, and, if it was available to him, the wrong uniform shirt. 

Switching schools in March, especially after being in the same place for so long, has been a difficult concept for him to grasp. For us, too. Switching out the old shirt once it was already in his careful pile wouldn’t help. 

Moshe had a plan.

“When we get home, run in ahead of me and move them.” 

He’s good, that guy.

So while everyone was stretching out and lugging bags and moving like complaining snails, I slid into the house, grabbed the shirts and scrunched them into my closet so they were hidden by my hanging stuff. 

Benjamin, as expected, wasn’t thrilled they were missing. But he didn’t even come close to freaking out, not even when we presented him with their replacements. There were two colors, orange and grey. His new school is really into giving the students choices. I like that. Our kids have less agency over their lives than their peers, so it’s nice to think he’s going to have more opportunities to make decisions, even if it’s just over what color to wear.

He chose orange.  

[ihateyourkids]

The OG family unit

A long time ago, when Benjamin was 15-months-old and still an only child, we took him on vacation to Florida. For a few days we escaped winter, hanging out at the pool and playing in mulch-covered playgrounds.  

I’m sure I was exhausted most of the time because Benjamin slept worse on vacation than he did at home, and I was also likely stressed over how to divide our time between my parents. But I don’t remember any of that. All I remember is feeling the stillness that happens when you step out of everyday life and away from making dinner and the self-multiplying stack of paperwork on the kitchen counter and having to remember to buy detergent.

Benjamin walked for the first time on that trip. Someone caught it on video, him moving from me to Moshe across the blue-carpeted playroom floor at my dad’s house. We must not have fastened the snaps at the crotch of his onesie after changing him, because it was open at the bottom and the panels flapped around as he toddled.

It was exciting and also a huge relief. Even though I was staunchly relaxed when it came to meeting milestones, we knew it was possible the not walking thing could become a Thing.

It was our second near-Thing. Not long before our vacation, Benjamin’s diligent pediatrician had mentioned that kids Benjamin’s age often have a few more words than he did at that point. It probably couldn’t hurt, he said, to set up one of the free evaluations provided by the city’s Early Intervention program. I thought he was overdoing it, but I listen to doctors. So, like a Good Mom dealing with a potential Thing I made the necessary calls and arranged for the speech therapist and special educator to come over. I felt quite validated when they both determined, separately, that while yes, Benjamin could have had more words, he was still on target for his age.

Next thing you know, thanks to some tropical air and soft carpeting, Benjamin was up and wobbling and I could cancel our upcoming date with the physical therapist. This felt like success, like we’d been making our way around the board game Trouble and had finally landed on that first peg in the home zone, where you couldn’t get knocked out. Safe. From what, I wasn’t sure, but from something that would certainly have been disruptive and annoying and heavy.

The human brain, it turns out, doesn’t play by the rules of Trouble. Soon Benjamin stopped saying “moo” when we asked what a cow said, and he also stopped doing things that indicated he was observing and mimicking others, like “cleaning” our apartment with a Swiffer three times his size. He stopped caring when you knocked over the towers he made with his stacking cups, and I don’t know if he stopped pointing or if he’d never pointed in the first place, but he wasn’t doing it by his second birthday, and this was apparently a big deal. 

There was a diagnosis and endless Internet research and specialists and special diets and special schools and almost right away another baby. There was a while spent avoiding airplanes and birthday parties and grocery stores and most friends’ houses and I lost my dad and Moshe lost his, and then there was another baby and a move from a cold, dense, rich city to a warmer, more open, seemingly vapid one. There were new schools and new friends and lots of driving and beach days. There were periods of calm and periods of chaos and epic messes and minor miracles.

We didn’t fly anywhere alone with Benjamin, just the three of us, until last week. It was different. He was 15 in years instead of months, and we went headfirst into the cold instead of taking a break from it. Also, this time we weren’t hoping to dodge another evaluation, we were seeking one out.

There’s been a lot going on lately—not so much with Benjamin himself but with the system that’s supposed to support him—and it’s been confusing. Less confusing than it was back then, when we didn’t know what the hell was going on, but confusing enough that we felt compelled to do some testing and get advice from the expert who cleared things up for us in the early days. The one who, with astounding amounts of knowledge and savvy, gave us a plan we could follow.  

So even though the circumstances were different, even though this was technically business, not pleasure, the three of us once again packed up and ditched our everyday routine, with its mundane hassles and comforts, and went through airport security and bought overpriced treats at Hudson News and plugged our headphones into devices and flew somewhere that was familiar but wasn’t home. 

Like last time, there was walking involved, except now through a city instead of across a room. Benjamin really enjoyed it. In the few hours of free time we had he sped ahead of us to the rhythm of the music on his iPod, as we went to the hotel and to get quesadillas and hash browns and dumplings and to briefly visit family and browse at the M&M store. 

Like last time, he had us all to himself, although back then we were probably less distracted. iPhones hadn’t been invented yet.

Also, just like last time, we were still in the middle of making our way around the game board, popping the dice in it’s clicky plastic dome, hoping we’d land somewhere okay.

 . 

[ihateyourkids]

Of Rats and Men: A Bar Mitzvah Story

Zack just had his bar mitzvah. For a long time it was the big thing on the horizon, the event we were all working toward and looking forward to. It was nice to have this happy focus to land on when I was doing errands and carpool and other boring activities.

I’d be sitting there, stuck in some intense Miami winter traffic, and instead of caving into road rage, I’d shift gears (figuratively) and imagine Zack accomplishing this goal in front of our community and all of the other various important people, built-in and curated over the years, who would be traveling here for the event. I especially liked imagining everyone interacting and maybe getting to know one another. It made me feel a very specific kind of delight, similar to the way I feel when a character from a favorite book shows up in something else by the same author.

I’d also think about what we should wear, which would inevitably make me think about the photos we would take, which would remind me of how really soon this event that hadn’t yet happened would be frozen in time via a few images and how over the coming years we’d flip through albums and talk about how good and bad and young and old we all looked, and also maybe the craziness of the fact that not everyone in those photos was around anymore. Stuff happens in the time that stretches out between milestones.

I thought about much lighter things, too, like about how the synagogue social hall was going to look full of flowers and framed photos of Zack and a bit of New York Giants paraphernalia, and if I’d been really stupid to agree to order those personalized cocktail napkins, and if the seventh graders at the kids dance party would dress like 22-year-olds and be on their phones the whole time.

And then, finally, eventually, and also in what felt like five seconds, Zack got up in front of a lot of people and read his whole Torah portion, and it was obvious that his year plus of hard work had paid off. Everyone did mingle and connect, although it turns out it was more fun imagining that part—in real life I was mostly consumed by anxiety and guilt over not spending enough time with certain people (i.e., every single person there).  We all looked nice for the pictures, especially Zack in his fancy suit and handkerchief and cufflinks and tie clip, and the room looked even better than I’d imagined it would during all of those antsy red light moments. The cocktail napkins = totally fine. The kids were basically all dressed appropriately and I’m pretty sure they were dancing more than Snapchatting. Zack certainly had the best night of his entire young life.

And then we went home with a stack of envelopes and the neon glasses the DJ gave out and a few of the remaining Zack masks on sticks I’d ordered. Zack and the camp friends I’d somehow allowed to sleepover for the whole weekend went for a late night swim before crashing on their deflating air mattresses, and the next day everyone left and that was that.

Some people asked if I was relieved or sad it was over. I was neither. It was more neutral—like there had been a wormhole that had opened in our life, sucking up time and energy and money and emotional real estate, and then it collapsed and everything looked mostly the same, except things were slightly, imperceptibly different, because there had been some time travel involved. In this case it had been that Zack went into the weekend a kid, and had come out of it a man, according to Jewish law. To us he was still a shower-averse middle schooler who’d just gotten his braces off, but okay.

His Hebrew birthday was the week of the bar mitzvah, but he turned thirteen on the Gregorian calendar this week. The night before Zack’s English birthday, Moshe went to barbeque a plant-based burger for himself and found a rat in our grill. Yes, a real, live rat. Like from the film Ratatouille. But also like from the New York City subway system. And, also, apparently from our seemingly sanitary beachside neighborhood.

“It got in there with the hood closed, so just leave it alone and it will eventually leave!” I hissed/screeched at Moshe. I did not support his plan of scaring away the rodent by turning on the gas. Somehow a cooked rat seemed worse than a live one, at least when it involved our appliances.

We sat inside frozen, looking out at the grill through the locked patio doors, unable to agree on a course of action. Finally we turned to the newly-minted adult in the house and asked if he’d check the rat status. He easily agreed, and went out there utterly calm and un-skeeved. We shielded our eyes as he opened the grill.

“Yup, it’s still there,” Zack reported.

A couple of seconds later: “Okay, it’s gone.”

And that was that.

Photos by Jerome Royes

[ihateyourkids]

The best way to prep for a bar mitzvah: Leave town

Zack’s bar mitzvah is right around the corner. If it had been up to me I would have spent this whole winter break in stressy hibernation--a kind of planning fugue state. That’s how I operate. But luckily (I think?) Moshe and I operate differently, and he convinced me to break out of my comfort zone to take a family trip. We drove just a couple of hours away to a town with decent waves and a sweet little surf school.

I’ve never been able to pinpoint one activity all three of my kids, with their various ages and interests and differently wired brains, have been able to do together.  Until now. 

Yes, Ayla and Zack have both tried surfing separately, and Benjamin has participated in the uber-special Surfers Healing. But there he is surfing tandem with a professional, which is amazing, but different than going out on his own board and being forced to be more independent. He did great. They all did, each in their own way and at his or her own level. What more can you ask for?

The time off the beach was nice, too. Benjamin is so into music lately, and he spent a lot of the downtime that is typically so challenging for him with headphones on, jamming to his favorites. This was especially helpful during those fantastic 4 AM vacation wake ups.

ln general he was just more content and at peace than ever. This really encouraged Ayla, who gets nervous when he’s nervous, to let her guard down and try to connect with him. 

I’m not going to pretend there wasn’t an irritating amount of fighting, but there was also whispering and cracking up over ridiculous inside jokes, probably at our expense but who cares because laughing is so much less annoying than whining.  

It was short but sweet and I didn’t really fall behind on planning. If anything, I think we’re all a little bit more ready.  

[ihateyourkids]

The Benjamin Papers

Benjamin is a 15-year-old male who enjoys having his picture taken

Part of the job of being a special needs parent is wading through piles of paperwork. This is definitely one of the downsides, a little bit because paperwork is annoying, and a lot because this particular kind of paperwork is a catalog of your kid’s deficits. 

I’ve always been decent at facing these evaluations and IEPs and incident reports, these portraits of my son rendered almost entirely in the negative. I understand they serve a singular purpose, which is to explain to the city or school or insurance company exactly how Benjamin needs and deserves to be served. So I read them in a neutral and detached way, the way I’d read a newspaper. Okay fine, maybe in this current climate that isn’t the best example. Let’s say I read them as if they are passages in a textbook. As if these clinical accounts of my son’s communication delays and below-grade-level academic skills and maladaptive behaviors are all just facts I need to hold somewhere in my brain, for a test I might take one day.  

Recently, though, I was handed a report that was impossible to read in a neutral and detached way. It made me feel very bad. As soon as I put it down I had this desire to grab a really inky red pen and mark it up with edits, switching all of those weaknesses out for Benjamin’s many strengths and funny quirks and insanely massive gains.  

That was the seed of the idea for this post. I thought I’d write a pretend report that countered all of those other unfortunate real ones. My made-up document was going to start out with the same standard first few words they all begin with: “Benjamin is a 15-year-old male who…” But then I’d ditch all of the downers, and instead include details that round him out, that make him a whole person. Details I wished mattered in that context, like that he’s obsessed with M.I.A. and Cardi B and the soundtrack from Matilda right now, and that he’s the only kid in my house who doesn’t need to be prompted to put away his laundry, and that he can remember something he ate on a field trip in 2006.

I started to write it, this list of the things most people don’t know about Benjamin because it’s not always so easy to get to know him, but I didn’t like how it was turning out. It felt gimmicky and insincere, like an online dating profile or something. Nobody is just a sum of their challenges--or a just collection of positive qualities, either. That’s not how it works. 

Writing about my life and family here is something I do for myself. It’s a good way for me to process all of those difficult and funny and furious and mundane moments, and I especially love looking back at what I’ve recorded.  A lot of it is stuff I wouldn’t have remembered--at least not in very much detail--if it wasn’t written down. It occurred to me as I was staring at the screen, trying to figure out how to save a post that didn’t feel completely honest, that I’ve also been doing something else here in this tiny corner of the Internet for the last eight years. I’ve been putting together an alternate public record of Benjamin, one that truly counters all of those reports. I’m very happy it exists.

photo by Jerome Royes

[ihateyourkids]

A holiday message from Benjamin

Thanksgiving is not my favorite holiday. I don’t love the food, we don’t have a big extended family we’re obligated to be with and be annoyed by, and it’s just weird to have one day when everything is closed, another when you can’t buy anything for fear of being stampeded, and then after that a whole weekend to get through. 

The looseness and routine upheaval that characterize a few days off of school are always stressful for Benjamin, and this time is no exception. In fact, it sort of feels worse. Usually in these situations it really helps to show him his calendar, on which days gone by are Xed off, and the ones coming up are filled in with tiny lunch and dinner menus, written in pencil. In case things change. 

Unfortunately, for some reason this tool is not currently working. This morning he came downstairs dressed and ready to spend the day at his respite center (not happening until tomorrow), and whenever we try to entice him with the prospect of Thanksgiving, he very urgently corrects us. 

“Shabbat!” he’ll say, followed by the foods he’s expecting. “Challah dough! Marinate steak! Cookie sticks!” 

We just nod and change the subject. Trying to explain that Shabbat is not happening until Thanksgiving is but a bloated memory doesn’t go over very well.

After a difficult morning he was sitting on the sofa watching Moana when I heard him calling me. 

“Help me Mommy. Computer Daddy. Pictures,” he said.

I wasn’t surprised that he wanted me to log on to Moshe’s computer so he could scroll through old photos. It’s one of his favorite activities. There are thousands of images, and apparently he’s memorized the order because he can zoom through them so quickly that they all blur together and then suddenly stop, with purpose, on the thing he’s been looking for. 

This time it was a string of photos from a trip we took to New York many Thanksgivings ago, right after we moved. This was very surprising.  

We looked through them together and he talked about every single one, in that way that he does, which is by pointing out super specific details in each photo, things most people who don’t see the world the way he does would never point out. 

“Brown luggage.”

“Brown building. Dark brown. Jacket. Hood.”

“Dinosaur shirt.”

“Ayla sweater.”

“Dark green. Home.” This was our old house. 

“Kiddush,” he said, pointing to the bottles in the background, which do sort of look like the drinks table at a synagogue kiddush, although this was actually our Thanksgiving meal. 

“Rice Krispies, ingredients: Marshmallows, butter.” (Translation: The thing in Zack’s mouth is a Rice Krispie treat, which I remember even though this photo was taken six years ago.)

The choice to show me these pictures could have been a fluke, or it could have been a form of communication. Like morse code, or a message in a bottle. Maybe Benjamin wishes we were up North because Thanksgiving is something that should be experienced in the cold, or maybe, like me, he’s not feeling the food. Who knows. All I can say for sure is that while the day didn’t totally turn around after that, it definitely got a little bit better.