May 14

Some funny things Benjamin said

Before I get started, I’d like to acknowledge the sheer incredibleness of the title of this post. 

There was once a time when I wasn’t sure Benjamin would ever say anything. Then came the time when I wasn’t sure if he’d ever use language to express anything past his most basic needs. And now, while he’s still not like those barfy youngsters from my kid-hating days who walked around spewing adorable lines, he has been pretty mind-blowingly verbal lately.

Here, a few of my recent favorites. 

1. “Fish! Light!” The other day Benjamin came home from a fun afternoon with Linda, his therapist, with a huge smile—and a couple of new pets. He watched her set up the tank with a level of focus usually reserved for an Alvin and the Chipmunks film. I thought he’d lose interest after the fish were released from the bag they came in, but the next day he brought me over to the tank and pointed out the little guys, and the blue light that makes their home glow. 

2. “I want Kale.” I should note there was also a time when I thought my kid would never eat anything other than chicken nuggets and pretzels.

3. “I like Ketchup.” Benjamin still loves his video modeling program. I still love listening to him learn to comment. 

4. “The luck of the Irish be with you!” More fun with video modeling! The last time Benjamin’s lead therapist came over she made an on-the-fly video of herself saying stuff about the pictures in one of Benjamin’s beloved cookbooks. The point is to get him to do more than just label the stuff he sees, which he does pretty obsessively while flipping through the pages. Okay, so he mumbled this line, but you’ve got to appreciate the deadpan fake laugh. 

5. “Happy.” What he had to say about a photo of himself in which he is smiling. 


Apr 17
[Flash 10 is required to watch video]

To you this probably looks like a grainy video of Benjamin pretending to put ketchup on a hot dog. To me (at the risk of sounding melodramatic), it’s footage of a minor miracle. 

Like many kids with autism, Benjamin is epically delayed when it comes to play skills. Back around the time of his diagnosis, we bought him every toy he ever so much as looked at, plus every toy anyone has ever said was good for spectrum kids. I’d be hard pressed to name one he liked enough to pick up on his own and engage with for more than a few seconds. 

Zillions of hours of therapy later, he’s now pretty good at closed ended activities, such as puzzles and simple board games, although he generally only seems to enjoy them even remotely while in an actual therapy session. But pretend play—forget it. Six years of intense programming, and nothing. He’s never even been into trains or action figures in that stimmy, repetitive, lining up way many of his autistic peers exhibit. 

So when Tracy, his super duper talented lead home therapist, walked in with a Little Tykes barbeque set a couple of weeks ago, I was a slightly hopeful, but mostly skeptical. Fast forward one hour, and my jaw was practically hitting the floor. 

Tracy set up a mini dvd player next to the grill, on which she ran a short video of herself playing with—and commenting on—the plastic hot dog, bun, tongs, etc. Benjamin was prompted by Sarah, Tracy’s colleague, to model the actions and words he heard on screen. 

Not only did he immediately get the concept of video modeling, but he acted as if  it was the most awesome, hilarious thing he’d ever experienced. He was cracking up,  copying Tracy’s comments, and even coming up with some of his own lines. My favorite was “I like hot dogs,” which he proceeded to sing throughout the remainder of the session. No small feat for a kid who rarely ever says anything other than, “I want [fill in the blank].”

The grill is now the highlight of his nightly sessions. This evening, while tucking him into bed, I asked Benjamin if he’d  had fun playing with it. Instead of his usual response (a flat yes or no that often doesn’t indicate if he’s even understood my question), he giggled and said, “Yeah. I want Ketchup.” 


Apr 16

Zack on autism in ancient Egypt

Ever since learning about the assassinations of Martin Luther King Jr. and Abraham Lincoln, Zack has been sort of obsessed with death. So I wasn’t surprised when, during our nightly reading of a kiddified Barack Obama biography, he got stuck on the fact that Obama’s grandmother died just two days before the 2008 election. This led us to the question of whether or not she’d been able to vote for him from heaven, which led us to average life span, which led us to, yes, autism in ancient Egypt. 

Zack: How come Avraham lived for so long?

Me: The world was a lot different back in the time of the Torah. 

Zack: How?

Me: [Stumped pause] There were no iPads, there was no TV… Yeah, there were no electronics.

Zack: So if Benjamin had been a slave in Egypt and he had autism he would have said to them, “I want TV. I want Yo Gabba.” And they would have said, “There is no TV!” 

Glad to see that Jewish day school education is paying off. 


Apr 15

It’s not fair

It’s Autism Awareness Month, and over at Parents.com, Ellen Seidman, of Love That Max, has handed over her column to autism bloggers. I was happy to contribute. Click here to read about how life isn’t fair for Zack, and how this is (hopefully) a good thing. 


Apr 6

Cleaning and crying this Passover

It’s that time of year again! My latest on Kveller.

Autism, Passover, and Spring Cleaning

By Jana Banin at 9:35 am

Raising a child with autism comes with a lot of crap. I’m not talking about the stares from strangers, the battles with insurance companies and school boards, or even the underlying, ever-present stress of wondering what my son’s future will look like. That’s all part of it, of course. But the crap I speak of today is of the tangible, dust-collecting variety.

What can I say? Autism takes up a lot of freaking space. There are the binders of therapist-recorded data, the pendaflex folders filled with evaluations and invoices, and, of course, the endless piles of teaching materials.

From the huge dry erase board on which we draw Benjamin’s daily schedule, to the card next to the bathroom sink featuring a pictorial breakdown of the act of hand washing (water on, wash hands, water off, dry), to the playroom closet stuffed with toys and games and visuals his therapist uses during sessions, our house is pretty much blanketed with tools that help Benjamin learn to communicate, follow routines, and transition more easily.

Benjamin, 8, was diagnosed 6 years ago, so by now these items have become a natural part of the landscape of our home—a part I rarely think about them. That is, until Passover rolls around.

I’m one of the crazies who does a whole top-to-bottom cleaning thing before the holiday, so every spring I’m forced me to confront (and organize, weed out, and de-grime) the sheer amount of stuff.

The process is always cathartic, and often emotional, too. This year the thing that really got me was the bin filled with stories and other visual tools we’ve used to get Benjamin through rough times. Maybe it’s because they were all made by his old therapists, who I’ve missed so much since moving out of New York last summer, or maybe it’s because the materials are full of cute photos of Benjamin, but I was pretty choked up. This wasn’t just a dusty pile of laminated print outs, this was a history of my son and his development. Here, a few highlights.

Benjamin’s Exercise Book, age 4: Atara, Benjamin’s old occupational therapist put this together so we could practice the yoga poses she was working on with him at school. I was floored when I first saw it—not only because she figured out that yoga could give him the sensory input he needed to stay calm and focused, but because he could actually do it. There was my kid, who couldn’t follow a simple command like “throw it in the trash” or “say hi to Daddy,” doing downward dog.

A Trip to the Barber Shop, age 4: To say that Benjamin was terrified of getting a haircut is a gross understatement. Atara practiced the routine with him (sitting in the chair, wearing the cape, getting his hair sprayed and finally snipped) a bunch of times and when he got really good she made this book so we could read it together before future visits to his stylist.

This Week We Are Going on a Trip, age 5: Watching Benjamin learn to ski was mind blowing. I’d forgotten how we used to have to duct tape his gloves to his jacket so he wouldn’t pull them off until I saw this book his teachers made to prep him for an upcoming trip.

Yeah! It’s Time for Passover!, age 6: Benjamin has a hard time with change, and things really change over Passover. Megan, Benjamin’s former speech therapist, made us this book to help Benjamin get mentally prepared for a trip to Safta’s house, and for the sudden absence of his favorite foods. This is one I’m going to edit and use again this year.

* Calendar, age 7: Even though I talked about our move often with Benjamin before it happened, I wasn’t entirely sure how much he understood. To help him process the information, Megan made this calendar, which laid out when everything was happening. Interestingly, every time we tried to go over it with him he became super anxious, showing us that he likely understood way more than we gave him credit for.

After lots of kvelling and a few tears, the stuff is all organized, free of stray Cheerios, and packed away in the playroom closet until next year, when I’m sure there will be lots more to go through.


Mar 29

Is a boring post better than no post at all?

As you may have noticed, I’ve had nothing to say lately. This, I’ve realized, is sort of a good thing. What it really means is I have nothing to complain about. 

The other night I thought that was going to change. Moshe was working late and Benjamin’s home therapist cancelled. Lots of complaining potential there. But then, wouldn’t you know it, everything went totally smoothly. On top if it all, in an extremely rare turn of events, Benjamin and Zack actually sort of did an activity together. 

I knew Zack would love those little capsules that turn into sponge animals when dropped into water, but I was certain Benjamin would lose interest as soon as I told him he couldn’t eat them. But he was fully engaged, which got Zack even more excited. It was really cute. 

Then Benjamin squeezed project glue all over the sofa. But whatever, I’m so over complaining.


Mar 14

On the road

Florida is a crazy place. I mostly take in the craziness from my car, since I’m pretty much always in a car. Hence this post: The three craziest things I saw while driving this week.

1. A guy waving around a huge, gun-shaped sign reading “We buy guns.”

2. This billboard:

To be fair, I see this billboard—and others like it—all the time. But today, stuck at a red light, it actually worked on me a little. 

3. So bummed that the light changed before I snapped a photo of this awesome one, but I’ll try to do it justice. It was an ad, pasted on the door of a BMW, for a company that does Venetian plaster (whatever that is). The photo featured the brother/owners, sitting back-to-back and dressed in matching outfits. Their slogan: “We work only for rich people.” 


Mar 1

My nanny left me

A repost of my latest on Kveller.

 

Mar 1 2012

I Just Got Dumped

By Jana Banin at 11:30 am

I was dumped

I was recently dumped. It’s the first time in years I’ve gone through a breakup, but it turns out I’m handling it exactly the same way I would have back in the day.

Namely, I’ve been driving around, blasting melodramatic music (now its Adele instead of Tiffany or Joe Jackson or the Smiths or whoever made me weepy at the time, but same difference), rehashing the details in an effort to figure out what wrong, and web stalking the other woman. Yep, there was another woman. And, according to Facebook, she is cute and blonde. Bitch.

There’s just one difference between my heartbreaks of long ago and this current one: I’m not mourning a guy at the moment. I’m mourning my nanny. 

This isn’t so much about my relationship with N., of course. We got along pretty well (I thought so anyway). What I can’t believe is that she could just walk out onAyla, my 22-month-old. The two of them had a special connection, and even now I believe it was the real thing.

Ayla’s picture was the screensaver on N.’s phone. Neighbors would text me from the playground to tell me they’d just seen her singing to or playing a silly game with Ayla, and that Ayla seemed to be having a blast. Some days Ayla cried when N. left for the day.

Listen, I know that ultimately it was just her job, and I didn’t expect her to stick around forever. But I was still very upset when she just didn’t show up for work one day.

I was even more upset when I finally reached her. She apologized profusely—she’d been in a biking accident and the friend she’d asked to tell me the news must have dropped the ball. Her leg was broken and she’d be out for between four and six weeks. I felt awful for her.

Shortly after that my upsetness peaked. Someone called to inform me that N. was not in fact healing at her aunt’s place in Tampa. Nor was she back home in Peru—where she’d said she was considering returning to once she got better. Turns out N. was maybe a mile away, working for another family in our sizable yet tight-knit suburban Jewish community.

It was then that I was flung back into spurned girlfriend mode. How could I have trusted someone who could tell that kind of lie? Was this somehow my fault? What would I say if I ran into her in the neighborhood? These are the questions I ask myself as I turn down assignments and cut Ayla’s naps short so we can make it to her brothers’ schools on time for pick up.

Luckily, this kind of rejection has been way easier to recover from than the romantic kind. Yes, I’m hurt and disappointed, but getting stuck on it just isn’t an option. My life can’t run if I don’t move on. So slowly, via setups and the Internet, I’m starting to meet other people. Hopefully I’ll have better luck this time.


Feb 29

What To Teach Your Children About Kids With Special Needs

So glad Ellen Seidman (of Love That Max fame), included me in this great Babble post! All parents everywhere should read it. 


Feb 28

Please help Benjamin’s old school

When we were discussing the move to Florida, one of the only things holding us back was Benjamin’s school. Thanks to them, Benjamin started stringing words together into short sentences, eating food other than chicken nuggets, rollerblading, and writing his name—among other things. It’s a very special place and we were devastated to have to leave. 

As you can imagine, I was shocked and saddened to learn about their current crisis. They experienced a puff back, which is a dry fire. It resulted in the loss of their building as well as 95% of everything inside (learning supplies, curriculum materials, toys, furniture, therapy equipment, etc).

They are currently rebuilding the school and are accepting all donations in any form (money, toys, books, supplies, etc). If you would like to donate let me know and I can put you in touch with the right person. 

Here, some pictures of Benjamin in the place where he learned basically everything he knows.



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