I hate your kids

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

04 / 17

TBT: Passover Brain strikes again

I’m not generally a Throwback Thursday kind of girl (combing through and possibly even scanning ancient photos that nobody except my mom really cares about anyway = too much work). That said, in honor of Passover, which we’re currently smack in the middle of (two Seders down, six days of cracker sandwiches to go), I am re-posting something I wrote for Kveller around this time last year. It turns out copying and pasting is a lot less work than generating original content.

The piece is about how whenever this holiday rolls around I can never seem to remember how I’ve prepared for it in the past. This is bad news when it comes to the shopping and cooking part, and even worse when it comes to prepping my routine-loving son for a week of no school, different food, and a house full of guests. Then I went on to list how I’d so far been doing a spectacular job of getting Benjamin into matzah mode, and that I’d surely remember it all next time around. 

Full disclosure: I did not follow one—literally, not even one—piece of my own advice this Passover. Not because I was too frazzled and lazy to, say, create a social story or wean Benjamin off cereal days before he would actually be forbidden to eat it. Well, not entirely too frazzled and lazy, anyway. See, Benjamin has been incredibly flexible and calm lately, plus he understands so much more right off the bat. As soon as I say something he seems to immediately process it and know what I’m talking about. So why would he need all the hype and visuals? Obviously he fully got that our house was being depleted of regular food and filled with in laws.

Now I see how ridiculous that thought process was. If I need to constantly review my lists and schedules and menus and talk it all over with anyone who will listen in order to reassure myself it’s all going to be fine, why wouldn’t Benjamin need his very own equivalent of that?

So we were off to a rocky start, behaviorally and anxiety level speaking, but things are falling into place. Therapists coming to the rescue with stuff like bowling excursions really help, too.

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And next year, when I’m remembering the story of Jews being freed from slavery and all that, I’ll remember to print out a social story, too.

Now, the TBT portion of this post, care of Kveller:

How I Prepare My Autistic Son for Passover
By Jana Banin at 9:54 am

No grilled cheese for eight days?
Every year around this time I come down with an acute form of memory loss. I call it Passover Brain. With just two weeks to go before the first Seder, the panic sets in and suddenly it’s as if I’m observing the holiday for the very first time.

Where did I store the seder plate? How do I get those crumbs out from way underneath the oven? Does anyone make haroset safe for my nut-allergic kids? And why–why–is the only thing in my “Pesach” folder a 3-year-old shopping list?

The biggest missing piece, though, has nothing to do with what I need to do to get ready. Instead, the thing I most wish to find in that skinny file is a guide on how to prepare my son Benjamin for this crazy holiday.

Because of his autism, Benjamin, 9, has an incredibly difficult time with change. This is a kid who breaks down when I take a different route to school or heat up his lunch in the toaster instead of the microwave. Throw in the fact that his life basically revolves around food–”his” food–and Passover (which we observe strictly) becomes pretty daunting. No soy bacon in the morning. No grilled cheese Wednesday night. No restaurant Pizza Sunday night. It’s going to be a long eight days.

Since I can’t remember exactly how I’ve geared up in the past, this year I’m figuring it out as I go along. Here’s what I have so far.

1. Write a social story, i.e., a book explaining exactly what the holiday is going to look like–and more importantly, what the pantry is going to look like.

2. Involve Benjamin in the shopping. The social story helped introduce the idea that Passover is coming, but I saw it all click for him when we rolled through the special section in the grocery store. He helped load up the cart and then, when we left without matzah (I’d planned on getting it somewhere else), he spun the cart around and grabbed a 10-box case.

3. Find substitutes for his favorite things. Okay, so there’s no way around the cereal dilemma–Crispy Os will never, ever pass for Cheerios. But beef fry in place of the soy stuff he loves just might do the trick.

4. Start weaning him off his favorite things immediately. I’ll admit it: One of the reasons Benjamin is so rigid is because I let him be. I pack him the same exact snack every day because I don’t want to deal with a tantrum when he doesn’t get the yogurt, apple, Oreo, and bag of Pirate’s Booty he’s expecting. But as bad as that tantrum might be, there likely won’t be one the next time. Constantly changing it up is the key to increasing his flexibility. In other words, it’s time to bust out the Tam Tams.

5. Print out this list and stick it in the file. Right now.


04 / 2

What World Autism Awareness Day means to me

1.    On a basic level, not too much. Every day is Autism Awareness Day around here (in a good way!).

2.    A Facebook feed full of ribbons and puzzle pieces and statistics and bittersweet posts from parents whose kids lost their words as toddlers and are now different—but not worse—versions of who they were supposed to be. It’s all a little bit overwhelming, to be honest.

3.    Guilt over feeling overwhelmed by the social media onslaught (which I totally contributed to, naturally). Awareness is good for everyone, and I also like the trend of people renaming it “Autism Acceptance Day.”

4.    Avonte Oquendo. I can’t think of another news story that captured and haunted the special needs world (and the world at large) the way Avonte’s did. No child with autism is the same, yet so many of us saw our children in Avonte. This heartbreaking piece in New York magazine brings home how spectacularly dire it is to properly meet the needs of our kids.

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xo


03 / 18

All dressed up, nowhere to go

Because I am an incredibly organized person, I waited until there were just a few days left before our snowy vacation to make sure everything fit.

I guess everyone is really excited to get away, because they all insisted on staying bundled, 80-degree weather notwithstanding.

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Don’t be fooled by Benjamin’s chilled-out demeanor. He proceeded to request boots and gloves, and when I asked if he was ready to shed the gear he offered up a polite “no thank you.” Which was okay, until he demanded the car, and then skates, which I’m 99.9 percent sure translates to “skis.” Redirecting him wasn’t easy, but at least now I’m fairly confident the trip will be. 


02 / 24

Surf camp here we come

Surfers Healing is a (free!) one-day camp held all around the United States for children with autism. Sounds pretty great, right? We thought so too. Because sometimes weirdly lucky things happen, it turns Moshe is friends with Daniel Paisner, who co-wrote a book about Izzy Paskowitz, the surfing guru—and autism dad—behind the program.

First Moshe reached out to the organization about the possibility of holding a local event. Then he found a couple of awesome friends to host and sponsor. Now, a couple of months later, Surfer’s Healing is officially slated to come to our area!

Check out the list of upcoming dates to see if they’re stopping over near you, too. Then watch their clip from “Last Call With Carson Daly.”

Surfers Healing Spotlight - Last Call With Carson Daly from Joe LaMattina on Vimeo.

In the video, Izzy and his wife Danielle talk about how therapeutic surfing has been for their son Isaiah who has autism—as well as for the other children they take out. There’s also some footage from “The Swell Life,” a reality show about their family from the Oprah Winfrey Network.

The part that really got me was the mom of a camper getting choked up watching her son on the water.

“I wasn’t sure if he would like it but he’s having such a good time,” she said through happy tears.

I know exactly what she means—I’ve said the same thing so many times. I’m never surprised that Benjamin can do something, it’s just that his anxiety often gets in the way of him trying and/or enjoying new things. There is hands down absolutely nothing better than watching him go for something and love it. Such as, for example, surfing.

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See that fuzzy, speck of a person out there? That’s Benjamin. On a surfboard. Where he remained for a solid 90 minutes.

Something tells me he’s going to have fun at camp.


02 / 5

Some people (like me) never learn

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Disastrous messes are no fun, but obviously it’s impossible to stay mad at this face.

“How come about half of your stories start with ‘I never thought Benjamin would go for the [fill in the blank food or otherwise messy item]?’” my sister asked when I told her about how, at the super fantastic hour of 4:30 AM, we discovered our living room blanketed with the contents of an entire box of Rice Krispies.

More frustrating than the clean up is knowing just how right my sister is. This isn’t the first time Benjamin has raided the kitchen. Or the second. Or the third. You don’t need to have a PhD in molecular biology (like my sister) to get the point.  

 I’m not sure why Benjamin does this—or why we have been so unsuccessful at curbing the behavior. (Getting him to clean it up is supposed to work, but hasn’t in our case). It could be a regular impulse control issue, or the fact that sneaking food is a way for him to take some control in a world in which he probably often feels he has very little control. He could not care at all that it makes us crazy—or he might like making us crazy. I will add these questions to the list of things I plan on asking him someday.

Just as baffling: If I know that my incredibly intelligent kid who is becoming more and more adept at problem solving every day is going to do something, why aren’t I more careful?

That, my friends, is something I was asking myself this morning, when I found him on the sofa with the jar of oily, sticky Sunbutter he’d found in our one unlocked kitchen cabinet—the very same cabinet that had housed the Rice Krispies. Luckily he hadn’t succeeded in breaking the seal, so crisis averted. Just do me a favor and don’t tell my sister. She’ll kill me.


01 / 27

Milestone Monday: The yoga edition

We often focus on the brand-new, crazy miraculous achievements our kids make (reading! chilling out! performing in a musical!), but not so much, I’ve realized, on the slow and steady improvement of previously-acquired skills. Like, in this case, Yoga.

Benjamin’s been bending and stretching since he was three. As good as he’s become at the practice, he’s always needed some kind of nearly constant cue to stay on task—be it physical, visual, or verbal. Lately, though, he’s much more independent. So independent that the person guiding him can step back. And take a bunch of shots. (Thanks Victoria!)

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01 / 21

5 birthday party problems, solved

Throwing parties causes me so much anxiety sometimes I think I have an actual phobia.

The good news is Zack’s eighth birthday celebration went off without a hitch. The even better news is the flood of relief I experienced once I knew it was all good (I’d included the correct date and time on the invitation, bought enough food, didn’t forget to invite anyone, and so on) helped me handle all actual party-related issues with ease.

Problem #1: How could we get Benjamin to participate in the go-cart racing festivities?
Solution: We wouldn’t. We’ve tried this activity before, and he is officially terrified of it. While we (and by “we” I mean a skilled and patient therapist) often have success convincing him to try things he’s afraid of, this wasn’t necessarily the best time to push him. Luckily the party room was equipped with TV, and we were equipped with a Monsters University DVD.

Problem #2: Who’s going to watch Ayla?
Solution: Monsters University and a Ring Pop.

Problem #3: What to do when Zack doesn’t receive a medal because he wasn’t among the top three fastest racers?
Solution: Go against my deep-seated belief that kids should only be called winners if they’ve actually earned it, and snag a medal for him on the sly. Whatever—it’s his birthday!

Problem #4: How to keep Benjamin away from the cake, pre-candle lighting?
Solution: Monsters University, and also lots of self-control on his part. That’s not to say he wasn’t eagerly awaiting this portion of the party. We were treated to a couple of sweet renditions of Happy Birthday prior to cake cutting.

Problem #5: How to keep Benjamin away from the leftovers?
Solution: Toss them. After Benjamin’ endless—and I mean endless—requests (“cake,” “I want cake please,” etc.), it was clear if we didn’t get rid of the thing we’d find whatever I didn’t end up eating all over our sofa at 5 am the following day.

So really, he did me a big favor.


01 / 14

Today’s near-death experience

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Speaking of when things don’t go as planned, this photograph was taken today at 7 a.m. Its purpose was to document and commemorate Zack’s happily uneventful stint as class fish babysitter. Somehow, we’d managed to avoid a few previous—and fatal—mistakes. 

Benjamin didn’t feed 2C Junior an entire container of fish food!

We didn’t overfill the bowl to the point where 2C Junior could leap out!

2C Junior did not end up in the “fish hospital” located in the lake behind our home! 

Fast forward thirty minutes. Parked in the school lot, I noticed Zack had loosened his iron grip on the bowl, i.e., the bowl was lying diagonally in his lap. And the bowl was empty.  

"Good thing I’m not grossed out by touching a fish!" Zack said proudly after he’d rescued 2C Junior from underneath the seat in front of him, in what was, thank goodness, the nick of time. 

Good thing. 


01 / 9

When things don’t go as planned: The winter break edition

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I was thinking this post would be about how special and amazing it was for Moshe and Benjamin to return together to the Bahamas, seven years after their first father-son trip.  

I’d start out by providing some context. While these days Benjamin loves exploring new environments and has a bunch of interests, back then, at age 3, we had to drag him, kicking and screaming, into any place he hadn’t yet spent a significant amount of time. Plus, if something wasn’t a pretzel or an episode of “Elmo’s World,” it was basically invisible to him. The kid could have been at the best children’s museum, toy store, or zoo in the universe and he’d either be freaking out or entirely impervious to whatever was captivating every single other child there.

The idea of a trip full of cabs, planes, shuttle buses, strange beds, and overall pervasive routine disruption sounded insane. To top it all off, we were in the middle of a long and only marginally successful potty training mission. Still, Moshe was somehow convinced Benjamin would fall in love the watery wonderland that is the Atlantis hotel, and brave, awesome dad that he is, he booked two tickets to Nassau.

"I feel pretty confident that the day we spent talking about the trip hit home and that he understands where we were going," Moshe said in the 11-page, photo-illustrated vacation summary he wrote up for Benjamin’s therapists afterward. "Of course he’s wearing underpants, but for my own sanity they are underneath a pull up. Just in case my confidence is misplaced, I self medicate."

At first, I would have told you in the post I was certain I’d write, it seemed my husband’s confidence was misplaced. Benjamin screamed for the duration of the plane ride, then vomited in the van on the way to the hotel. The traffic resulting from Anna Nicole Smith’s funeral (I kid you not) didn’t help, but soon things were looking up. Benjamin noticed—and even smiled—at the cruise ships they passed by, and he was delighted to finally arrive at the resort. 

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I’d have included some of my favorite lines from Moshe’s story, such as ”We order pancakes from room service. He eats them with a fork!" and "He clings to me when we get on board the boat, but as soon as we start moving he looks out at the water and at the other boats and gets very excited. It’s the type of excitement where he starts to bite me a lot. I eventually get him to stop."

And of course there’s the requisite I-sort-of-hate-your-kids sentiment prevalent in that newly-diagnosed time. “I start by giving him a recap of our day together and he doesn’t look at me,” Moshe said in an excerpt recounting one of their meals together. “I watch a family at a nearby table and get depressed. But then I think, we are in a new restaurant, he is calm and eating on his own, so I cheer up.”

Then there’d be a couple more pictures, like the one of Benj swimming with dolphins 

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and the one of our happy reunion a couple of days later.

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"When we get home Jana wants to know why Benjamin looks like a hobo," read Moshe’s caption of a photo in which my toddler is wearing a broken zip-up sweatshirt with nothing underneath. 

The truth is although Benjamin looked like a mess, he was actually in great spirits, completely, miraculously unruffled by the EIGHT extra hours tacked on to the trip due to a flight delay. The trip had been amazing—he’d explored and engaged in a way he never had before. Looking through Moshe’s write up now, it’s clear this was a major turning point for him.

Now’s the part where I’d fast forward to the recently-concluded, present-day winter break. We spent the first part of the vacation at home, making sure to show Benjamin videos of Disney cruises in preparation for our upcoming (and first!) adventure at sea. Since the boat stopped in the Bahamas and Moshe had booked entrance to the Atlantis for just the two of them, we also busted out that dusty old travelogue. 

We thought the images might jog Benjamin’s steel trap-like memory, and even if not, at least they’d get him ready for the visit. Naturally this time Benjamin, older, wiser, and more verbal, would be even more enthralled by the place, with it’s floor-to-ceiling fish tanks and endless pools.

Alas, that was not to be. While Benjamin had been super psyched for the cruise (“I want boat” he said about a million times in the days leading up to the voyage), the reality of being on a massive, lilting, crowded vessel with lots to do but no real structure was a different story.

For pretty much exactly the first half of the three-day trip he was palpably stressed out, whining constantly, unwilling to participate in activities, and sleeping just several hours a night. Unfortunately the Atlantis outing fell during that anxious time, and, long story short, he was nervous all day. So much so that my swimming-obsessed child, wouldn’t even set foot in the water.

So while, sadly, I am unable to post photo reenactments of Benjamin zipping down water slides or floating down the lazy river, the good news is Benjamin eventually got into the swing of cruising—and I have the happy shots to prove it. (They’re all care of Benjamin’s therapist Linda who was sweet and crazy enough to come with us.)

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At first I was bummed to learn grown ups aren’t allowed to attend the camp/child care programs (at this point Benjamin can’t really do stuff like that without the supervision of someone who “gets” him). But then I found out about the frequent open house periods, when adults are welcomed. Benjamin loved the baking activity.

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In a room with many ropes.

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Having fun with Linda.

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Benjamin’s not the only one who had fun with Linda. 

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She’s no Minnie Mouse, but she’ll do. 

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We don’t have that many pictures of Zack, since he was always either on the water slide that involves a chute opening up beneath your feet, sending you plummeting straight down a dark tube, or organizing camp-wide Mario Kart tournaments.

Other highlights from the boat include a movie theater showing current movies (think “Frozen” and “Saving Mr. Banks”), nightly theatrical productions, and a late-night pirate-themed dance party with fireworks.

The moral of the story: There’s no way to predict how things are going to turn out. That, and Moshe should write more travel journals. 


12 / 19

Benjamin’s super weird and sort of hilarious Christmas obsession

The list of things I hope Benjamin might some day accomplish is very, very long. Absent from that list is him turning me on to a freaky, funny viralish Christmas video featuring heavily made up hipsters. But Benjamin did turn me on to a freaky, funny viralish Christmas video featuring heavily made up hipsters, and I have to say, it was a pretty cool experience.

When I heard “Christmas Face” booming from his iPad (for the first of what would be 10,000 times), I was sure Benjamin’s YouTube surfing had bounced him from cake decorating videos right on into “Yo Gabba Gabba” territory.

Instead, he’d been perusing another one of his favorite genres, special effects make up tutorials. There he found this one by a duo called Rhett and Link, who appear to be YouTube stars. The video features these guys, along with fellow internet celebs Grace Helbig and Hannah Hart, singing their Gabba-for-grownups tune while transforming themselves into festive Effie Trinkets.    


I have no idea if Benjamin appreciates the lyrics, but there are some good ones in there. I especially liked “It’s my mother fruitcakin’ Christmas Face,” “What the elf has she done to herself?” and “Feliz Navi Dang!”

My reconnaissance Google research mission revealed that Benjamin is not the only one watching this musical masterpiece. In the last day or so “Christmas Face” has been written up on a bunch of blogs and on The Huffington Post. Thanks for keeping me ahead of the curve, Benj!

I should probably return the favor and play him the prequel, a little ditty called “Christmas Sweatz.” But then I’ll have another catchy song buzzing around my head all day.


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