Benjamin and Ayla bond. And stretch.

People are always asking me how Benjamin gets along with his brother and sister. It’s a hard question to answer, mainly because I end up coming off so negative which I really hate. The truth is there isn’t too much sibling interaction happening—especially between Benjamin and Ayla.

Zack, 7, is old enough—and has sat through enough therapy sessions—to understand how to relate to and engage with his brother, at least on some level. But Ayla just doesn’t get him, and it’s mutual. It drives Benjamin crazy when she whines (a frequent occurence) and it drives Ayla crazy when he expresses his annoyance by yelling out, “Ayla crying” or “Ayla funny” (not sure how he came up with that one). 

And then, yesterday, this happened.

Benjamin was following a Youtube yoga video during a therapy session, and Ayla joined in. And he let her. 

Benjamin and I visit a special needs sleepaway camp. I survive, and learn 6 important things.

On Sunday Benjamin and I flew up north to visit a camp he’ll probably attend this summer.

I was pretty terrified. What if he freaked out and/or threw up on the plane, or the rental car GPS sent us to the wrong town?. I was emotional, too. How is my kid almost 10 years old, and when exactly did he progress to the point where we’re even considering sleepaway camp?

But overall the trip was a success—and a real educational experience. Here are some things I learned. 

1. Benjamin’s new habit/tic/stim of clearing his throat in a way that makes it sound as if he’s hawking a loogie is not conducive to airline travel. Especially when the woman I am sitting next to is a germophobe who covers her ENTIRE FACE with her fleece every time he makes this sound. 

2. Although he was quite comfortable in New York City for the whole eight years he lived there, the city—where we quickly stopped to visit my sister before driving upstate—now makes him super anxious. He refused to walk by subway stations and dogs, which makes a stroll through Manhattan quite difficult. He did enjoy Dylan’s Candy Bar, though. 

3. This particular Courtyard Marriot is awesome. Benjamin got to swim. 

and watch Spongebob over breakfast in the lobby, where each booth had its own TV.

4. The special needs camp we visited after breakfast is as well-maintained and well-run as I’d hoped it would be. Benjamin had a great time exploring the grounds.

I’m sure he’ll do even better his first day there this summer, when the staff arrives and the whole place is up and running. (Until it’s time for bed, anyway, and he realizes he’s staying there—without us. Ugh.)

5. My mother-in-law was actually slightly offended by the fact that I have not included her in this blog so far. I snapped this photo of Benjamin eating lunch with his safta at the family bakery she manages. I was glad we had time to stop there before going back to the airport. 

6. Nobody seems to care that kids much older than 7 go nuts in the amazing amazing amazing play space in the Jet Blue terminal. 

See how happy Benjamin is here? Multiply his joyful expression by two thousand and you can imagine how psyched he was when we got home. 

Welcome, dollhouse

Someone like’s his little sister’s birthday present almost as much as she does. 

Take this quiz

It’s pop quiz day here at IHYK. Let’s see if you can figure out why this poorly-taken photo is thrilling to anyone who knows Benjamin well. 

A) Benjamin, who rarely does anything imaginative (at least not spontaneously) and has never really cracked a joke, tried on his brother’s hat. He then proceeded to walk around the house smiling, as if wearing part of someone else’s baseball uniform is a  funny thing to do. 

B) Instead of just freezing and repeating the word “cheese” because he knows that’s what we’re expecting, Benjamin seemed genuinely glad to pose for this picture.

C) After six long years I finally replaced my broken food processor.  

D) All of the above. 

Answer: D. (Well, except for C, which is really only thrilling to me). 

Me and my clogs on a fashion blog

The lovely Mara Menachem of Haute Drop-Off, a blog showcasing parents in the schoolyard (and their outfits), was nice enough to include me today. Flattering, but also deceiving—I was caught on the rare day when I had an event that required something fancier than ripped jeans and a holey t-shirt.

Anyway, scroll through Mara’s great blog and check out some truly stylish moms and dads. 

Milestone Monday: Benjamin becomes a couch potato

Forget all of the talking and reading and bike riding—Benjamin is finally doing something I’m really proud of: Staring at a screen.  

Okay, so the kid has been an electronics junkie ever since his Baby Einstein days. From the moment he could use his words to make requests he was asking for Elmo, and he instantly figured out the iPad. 

Lately, though, his taste, attention span, and skills have seriously evolved. Instead of watching the same episode of Yo Gabba Gabba  over and over, he sits through age-appropriate movies, laughing at the right parts. And you should see him on the iPad.  he’s no longer flipping quickly between apps intended for toddlers. Over the last few weeks he’s taught himself to play a bunch of those tricky endless running games like Pitfall, Subway Surf, and Temple Run. 

Long, unstructured days (like today: fever = no school) are still daunting, but definitely less so now that he wants to sit around for longer periods of time.

His new obsession: Wreck-It Ralph (or, in Benjamin speak, “Sugar Rush”). 

Out of my way mom, you’re blocking Vanellope.

An Astonishing April

“I woke up at 6:01 today,” Zack announced this morning when I came downstairs to make coffee. “But I also woke up at 2:15. That time it was because I fell out of my bed. I was astonished!”

Zack’s expanding vocabulary is just one example of how my kids are surprising me this month. Here, a couple more:

* Although she showed zero signs of potty training readiness, I bit the bullet after  discovering that Ayla was basically the last kid in her class still in diapers. She’s learned to pee in the potty most of the time, and I’ve learned that I am way too old and tired to potty train a toddler.

* In a bizarre turn of events, Benjamin, who survived for many years on pretzels, Cheerios, and chicken nuggets, is now the best eater in the house. His new obsession, which you cannot see in the picture below because he finished it all before touching his chicken: Quinoa. 

* Benjamin is riding a two-wheeler on his own! I would include a picture, but he’s too fast. The good news is he now actually looks at the road ahead of him while peddling. Now we just need to teach him to keep the same focus during his basketball drills. 

Passover prep, autism-style

How I’m getting Benjamin ready for a grilled cheese-less eight days, 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.

At the carwash

Each therapy session Benjamin gets to select an activity he can do once he’s finished working. Whenever a trip to the carwash is on his list of available choices he’s all over it.

His therapist Kayla always tells me how much he enjoys doing the drive through, but I didn’t totally get it until I saw the video she took today. 

Unsolved Mysteries: The Autism Edition

 When Benjamin was diagnosed with autism I quickly learned I’d be working jobs I’d never applied for. Over the last seven years I’ve worn lots of different hats: Advocate, purveyor of snake oil, therapist coordinator, (impatient, subpar) teacher, laminator, (now long-retired) kid hater. The most surprising gig so far, though, has been that of detective. 

At the very beginning I set about attacking the big mysteries. What had made my son swerve so swiftly and violently off the track of typical development? (Unsolved.) Was it possible he’d never really been on that track to begin with? (Unsolved.) Could we fix him? (Definitely not, and that was fine.)

Once I realized there was no point focusing on the larger than life stuff, I was able to throw all of my super sleuth energy into something far more useful: Figuring out my kid. Because when you are living with someone with severe communication impairments there’s a lot of figuring out to do. Why is he crying? Why is he laughing?  Is there any part of him that wants to play with other kids? Is he upset or in actual physical pain? Does he understand what we’re saying to him? 

It’s a tough job, but it does come with vacation time. There are long stretches when Benjamin’s language is up and anxiety levels are down and I feel like I’m really getting him. Unfortunately, this is not one of them.

Lately Benjamin has been having intense break downs that seem to come out of nowhere. They are most prevalent on weekends, when the days are longer and looser. This weekend I worked overtime. 

Case #1. Benjamin asks to watch Frankenweenie. Benjamin giggles during Frankenweenie. Thirty minutes into Frankenweenie Benjamin is sobbing and aggressive.

Hypothesis: He is upset because he has realized he forgot to eat his after-lunch cookie.

Status: Unsolved. 

Case #2. While on a scooter ride, Benjamin indicates he would like to cross the street. Once we’ve crossed he scoots up to the front door of my friend’s house, which he has never visited. He stands there whining but thankfully moves on relatively easily when redirected. 

Hypothesis: I’m wrong and he has been there, at which time he ate something he really liked.

Status: Unsolved.

Case #3. I tell Benjamin that when he wakes up the next day he is going to see his dad, who has been out of town for most of the week. He doesn’t get too agitated, but he does say, “No thank you. Linda.” 

Hypothesis: He is either angry at his his dad for traveling or really, really into his therapist Linda. Or a little bit of both.

Status: Unsolved.

Case #4. It’s Sunday morning and he’s on edge, pacing the kitchen, whining, and occasionally trying to pinch his siblings. 

Hypothesis: He does not like that I am breaking routine by making something different (pancakes) for breakfast. 

Status: Unsolved (although he did ultimately enjoy the pancakes). 

When I wasn’t all wrapped up in decoding and easing Benjamin’s anxiety, I was working on the bigger, underlying conundrum: Why is Benjamin so prone to losing it lately?

The good news is I think know the answer to this one. See, Benjamin has been making huge cognitive leaps. He’s learned to read and spell, he’s taught himself (!) to play Pitfall and other age-appropriate iPad games, and overall he seems just so tuned in. More than ever it’s clear he does understand much of what we say to him. The problem is, while his expressive language is improving, it’s still lagging far behind these other improvements.

I know how frustrated I get, constantly trying to interpret what’s on his mind. But I can’t even begin to imagine how frustrating it is for him to not be able to tell me. 

That’s why the tidbits he does randomly manage to reveal—no matter how small or peripheral—can eclipse a series of stumpers. Like when we were doing the coloring portion of his math homework this weekend.

“Orange and green,” he said before I’d asked which crayon he wanted to use for the picture of the rabbits. “Carrots.” 

There were no carrots in the illustration, but using a white crayon on white paper is no fun, and bunnies eat carrots, which are green and orange, so why not go with those colors? 

“I like your thinking,” I said.