I hate your kids

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

07 / 18

Camp photos: Love them or hate them?

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Annoyed or just caught off guard?

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Happy, but what’s all over his face?

Thankfully, most sleep away camps ban most forms of technology. But while our campers are undergoing a much-needed screen detox, parents are more glued than ever. At least this parent is.

Part of it is that with my cooking, chauffeuring, and nagging responsibilities drastically cut, I have more time than ever to waste online. The rest has to do with those amazing and infuriating photos my children’s camps post on a daily basis. Amazing because they offer a window into the kids’ summer lives; infuriating because they offer a window into the kids’ summer lives.

Back in my day, when dinosaurs roamed the land and the closest thing to a cell phone was a regular-sized phone you plugged into your car, children shipped off to summer camp could only access their parents  via snail mail or very, very rarely a phone call—and vice versa. Now, while they’re still cut off from us, we parents—addicted and feeling entitled to constant contact and information—are able to see our little ones swimming, boating, cheering for their color war teams, and more.

I’m not saying these shots don’t bring me a ton of joy—they certainly do. And in the case of Benjamin, who likely won’t tell me a single thing about what happened in the three weeks he was gone, they are sort of vital. But in my opinion the images chip away at the mystique and no-parents-allowed vibe of camp, as well as raise many a crazy-making question.

For example: Does he look happy here? Okay, so he looks happy in this one, but was it his only happy moment that day? Why is he always pictured alone, and not, like so many others, with his arm slung over a friend’s’ shoulders? Why are there so many shots of the counselors with that cute short kid and not my kid? Is he not one of their favorites? How come I don’t see him in that group hiking shot? And, worst of all: HOW CAN THERE NOT BE ANY PHOTOS OF HIM TODAY?

Then there’s what the cameras are doing to our kids. Can’t camp be one place in our ridiculously over-documented world where they don’t have to stop what they’re doing and pose? Where they can live in the moment and not feel the need to be Instagram-ready?

Not that any of this will stop me from my compulsive web stalking. In fact, uh, signing off. Don’t worry—if there are any new, smiley shots I’ll totally put them on Facebook so you (and the world!) can see what a great time my happy, cute kids are having.


07 / 7

10 unexpected things that happened on the way to camp

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This year’s journey to sleep away camp was packed with surprises. Mostly good ones.

1. A lovely TSA agent let us cut right to the front of the (long) security line. 

2. A lovely woman behind us in the security line sweetly let me know that her daughter is on the spectrum, too, and that she (mom, not daughter) could watch Benjamin if I needed to use the bathroom before my flight took off.

3. A lovely woman in our row let us have her window seat when she saw how, ahem, adamant Benjamin was about sitting in it.

4. Benjamin thanked her verbally—and by not throwing up during the flight.

5. At baggage claim our carousel was entirely empty, and not because everyone brought carry ons. Nobody’s luggage made it onto the flight. It was to arrive later that day.

6. After a long drive and a quick Target run (a few things to get Benjamin through a duffel bag-less day or two), we arrived at camp, where any anxiety Benjamin had been harboring seemed to melt away. Instead of clinging to me and asking for the car, like last year, he casually waved and said, “Bye Mommy.”

7. Later that day the driver delivering the delayed luggage called to tell me he was probably going to get to camp late at night, after the office closed, and if nobody was there to receive Benjamin’s stuff, he was going to leave it outside in the wilderness. And take a picture of it. Because obviously a picture of the bag containing everything my son needs for three weeks is just as good as the real thing.

8. The next morning the camp had still not received the bag.

9. This afternoon I was informed that the driver was missing. The airline was attempting to call his family to find out if they’d heard from him. Eek.

10. Biggest surprise of all: This evening the stuff was tracked down (not sure about the driver). It’s expected to arrive tomorrow. 


06 / 25

Five reasons to love American Ninja Warrior

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If you’re not familiar with American Ninja Warrior, it’s the U.S. spin-off of a Japanese reality show in which very fit people jump and hang from things, with the ultimate goal of being among the top ten very fit people to make it to the final showdown on Japan’s Mt. Midoriyama. (So basically, Iron Chef with stunts).

Zack, who has a history of infatuation with televised competition, and whose goal in life is to complete the INSANITY workout video series, is hooked. Here’s why I’m on board.

1. It’s threat-friendly. (i.e., “If you don’t stop singing ‘Ayla is annoying’ to the tune of  Everything is Awesome you cannot watch the upcoming American Ninja Warrior.”)

2. I get to hear Zack’s various creative pronunciations of Mt. Midoriyama.

3. It’s way better than Full House, which I have recently learned is still totally a thing.

4. Actually, now that I think about it, it’s way better than exactly everything on Nick Jr. Except for The Thundermans. They’re a family of superheroes!

5. Vincente King, an autistic contestant featured on the Miami episode. While Zack is aware that people who have the same diagnosis as his brother can be successful at many different things, he has never seen someone with autism be successful at something he is personally so obsessed with.

“I know this! I know this!” Zack shouted at the TV as Vincente’s mom, in a back story interview, described how her son has trouble making friends because of his communication difficulties.

I have to admit, I was pretty crushed when Vincente was disqualified after falling during his second to last obstacle. The thing is, Zack wasn’t.

 “I’m proud of him for even getting to American Ninja Warrior,” he told me. “And he only made one mistake! That’s awesome.”


Vincente King, American Ninja Warrior ~ Miami… by HumanSlinky

(Photo by: John Parra/NBC)


06 / 23

The horribleness of strangers

Yesterday at How to Train Your Dragon 2, Benjamin started laughing at a very high volume during a very somber scene. Out of consideration for my fellow moviegoers, I decided it would be a great time for a bathroom break. So off we went.

In the restroom, Benjamin switched to his regular yelpy noises that can be (and this time were) even louder than his ill-timed laughter. Because we were not in a dark theater full of people paying to be entertained, I didn’t even try to shush him. Fine, right? Not according to the person at the far end of the vast, Mexican-tiled bathroom I’d assumed was empty.

“SHUT UP!!!!” this person bellowed with some serious, Drago Bloodfist-like rage.

“Excuse me?”

Lame, I know, but I was waiting for my heart rate to lower and my head to clear before deciding on an appropriate response. Would I explain he wasn’t being loud on purpose? Or match her rage, plus throw in some bad words?

I was still working it out when my adversary emerged from her stall. She was a woman of around sixty, with a linebacker physique, culottes, and a sour expression. Her grey hair was pulled up into a ponytail near the very top of her head. I want to say she was wearing a fanny pack, but maybe I’m imagining it. I was still cloudy from the adrenaline at that point.

Not cloudy enough, though, that I don’t remember my response. Which was…nothing.

Listen, I’m not saying terrible style necessarily indicates craziness, but from 10 or so stalls away I definitely sensed some crazy. And what I’ve learned over the years is that it’s a total waste of time and energy to deliver any kind of response—be it of the shaming or the educational or the furious variety—to a crazy person.

So I waited for her to march out, and then Benjamin and I hit the photo booth in the lobby.

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We could have gone back into the theater and caught the last 20 minutes of the movie with Zack and my mom, but I was still sort of worked up. Plus, Benjamin had already seen it. So he knew how it was going to end.


05 / 21

Million Dollar Question

imageOne iPad, coming right up!

Benjamin knows how to tell us what he wants, usually with a word or two. For a long time now we’ve been working on teaching him to ask for what he wants. This has proven to be a challenge, most likely because questions require lots more organization and motor planning than simply spitting out “pizza” or “car wash.”

Another thing we’ve been working on is not acknowledging him when, instead of saying “pizza” or “car wash,” he whines to get our attention. This has also proven to be a challenge, most likely because it is basically humanly impossible to ignore his whining. Especially when it’s 5:30 in the morning and you’re irritable and you don’t want any of your other children to wake up.

Typically, in these situations I’ll bust into his room and either ask him what he needs (not great), or instruct him to use his words (slightly better). So you can imagine my surprise this morning when, before I even opened my mouth, I was greeted with this:

“Mommy, can I please have my iPad?”

It made me pretty happy, which he must have picked up on because as soon as I stopped cheering and handed him the thing he said “you’re welcome.”

Then he kicked me out.


05 / 16

On the title of this blog, and disliking typical kids for the right reasons

As I hope I’ve made abundantly clear over time in various posts, I no longer hate your kids. In fact, I already didn’t hate them when I launched the thing, although back then those irrational feelings were still fresh enough that the bitter and aggressive title was meaningful and funny (to me, anyway).

I quickly accepted this new version of my son the psychologists and developmental pediatricians and other specialists introduced me to, and soon I stopped wanting him to be anyone else. Benjamin wasn’t on the same developmental track as the precocious children we were surrounded by, the ones who said funny things and actually liked birthday parties and petting zoos, but instead of lingering on that I celebrated every teeny tiny hard-won accomplishment. Eventually I even stopped looking at his peers wistfully, imagining how Benjamin would be if he’d remained on their path.

Not long after that, I got knee deep in raising two typical kids of my own. Then, not long after that, I realized that parenting those guys can be just as challenging as raising a child with special needs.

Sure, as a result of  not having autism Zack and Ayla mostly do what they’re supposed to (developmentally speaking, anyway), educating them is not a huge drama, and I don’t stay up at night worrying about what will happen to them when I die.

But they do talk back to me, make bad choices even though they should know better, and act extremely spoiled. And they fight. LIKE, ALL THE TIME LATELY. And guess what? When they are in the car screaming and crying and whaling on each other because someone is singing along to Free To Be… You and Me too loudly, I may not hate them, but I also don’t like them very much.

Meanwhile, check out Mr. Peace Love and Happiness over there on the left, who per usual didn’t get involved in yesterday’s fight, and for once didn’t freak out (like I did) over the noise.

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So I guess I’ve come full circle: Typical kids can really really really frustrate me—not because I’m jealous of their typicalness, but because of their typicalness. That is all.


P.S. Ayla announced this morning that she wasn’t going to fight in the car on the way to school, and she stuck to it. Also, they all sang along happily to Vampire Weekend (which actually happens to be incredibly kid-friendly, if you’re looking for some new crowd pleasers), instead of obnoxiously demanding Free To Be… You and Me or Frozen or Here Come the ABCs. So we’re all good.


05 / 13

Ten things I learned from Surfers Healing

Surfers Healing: An organization that runs free one-day surf camps for children with autism.

My husband: A highly energetic and motivated person, who, in addition to working like crazy at his real job and coaching a handful of little league teams, coordinated Surfers Healing’s inaugural Florida event. He had some help, most notably from his amazing friend Daniel Paisner, co-author of Scratching the Horizon: A Surfing Life, a book about Surfers Healing founder Izzy Paskowitz, and another equally amazing (not to mention ridiculously generous) friend, Tom Feeley who hosted the event at his hotel, Sole on the Ocean.

But still. As someone who can barely make it to the grocery store these days, I am in total awe of the tremendous amount of effort that went into putting this thing together.

It happened this past weekend, and, well…wow! What an education—for the kids who learned to surf, and for me too. Here’s some of what I took away.

1. The surfing community is full of natural-born therapists. The humongous-hearted professional surfers who came all the way from California and Hawaii (plus a few from Florida, too) are equal parts patient, chill, firm, and sweet. As you might imagine, some of the children were terrified to hit the waves (even Benjamin, who has surfed before and loves it, freaked out over being made to wear a life jacket), and these guys handled it like the pros that they are. Children were gently(ish) pried from their parents and thrown onto boards, where the surfers rode the waves with them, tandem-style. According to my unscientific survey, 99 percent of the kids came back thrilled.

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Benjamin’s first outing required lots of manpower.

2. The surfing community is full of people with excellent core strength and balance.

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3. Being so involved has its perks, the main one being that our typical children got to surf, too. (Yes, that’s Ayla up there.) And here’s one of Ayla and Zack, surfing together.

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4. Watching families cheer as their kids ride back into shore really pulls at the heartstrings. image

5. So does the outpouring of support from our friends, who made donations and showed up to spend the day with us.

6. It’s entirely normal to throw up while surfing. Luckily it didn’t stop Benjamin from going right back out.

7. Sometimes when cops approach you on the beach, it’s not to question your permit. It’s to tell you how impressed they are—and that they’re sending over their friends from the local news.

8. Being in the presence of so many cool tattoos can make an eight-year-old realize that the kind he’s getting in birthday party loot bags are lame. Let’s just say Zack is really looking forward to turning 18.

9. It takes a very special person to run this kind of organization.

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Izzy Paskowitz = very special person.

10. When Izzy used the word “magic” to describe these events, he was 100 percent right.

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04 / 25

He’s crafty

In case you’re wondering who’s behind this piece of digital art, Benjamin’s gone ahead and cleared it up. Or maybe this AMAZINGLY AMAZING display of spelling and letter formation is meant to be part of the thing. That’s up for interpretation, I guess.

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In other art news, Benjamin is a budding potter. We enrolled him in a ceramics class mostly because we thought he’d enjoy the sensory component. Turns out he not only loves handling the clay, but also creating stuff with it. What’s probably most exciting is how great he is at following the involved instructions. So much so, in fact, that the teacher recently asked his (typically developing) classmates to watch what Benjamin was doing and follow his lead.

His first creation:

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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


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