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On the last day of his after-school tennis program, my 6-year-old came home with a trophy.
“Wow Zack, I’m so proud of you!” I said.
“Why? Everyone got one.” His blasé tone shifted immediately and somewhat manically to intense excitement.
“Oh yeah! Oh yeah!” Zack chanted as he pumped the trophy overhead, just like he’d seen a classmate do at his recent reading awards ceremony. Read the rest of this entry →
Everyone is busy and everyone has trouble keeping up. While I don’t claim any special level of industriousness for myself, I can say that, in the phrase people often use, I have a lot on my plate.
I’m divorced, and I live in Israel, where I have no family, other than my children, to help me out with life’s occasional emergencies. My sons are 16 and 12, and my older boy was diagnosed with autism (PDD/NOS) at age 3. He goes to a number of afterschool therapy appointments every week and sometimes I fill in for his aide at school during the day. My younger son has his own afterschool activities, some of which he cannot get to on his own. I work as the movie critic for the Jerusalem Post, reviewing films, covering the Israeli movie industry, and interviewing Israeli and foreign filmmakers. Read the rest of this entry →
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. Read the rest of this entry →
Shabbat shalom, indeed.
Over the summer we moved from Brownstone Brooklyn to suburban Florida. While our three children are thrilled about year-round pool and playground access (which actually is pretty awesome), for me it’s been a rough transition.
I miss my friends. I miss my kids’ friends. I miss my kids’ schools. I miss the front porch of our 100-year old house. I miss being able to walk a few hundred feet to get a coffee, a light bulb, or a manicure.
So yes, I complain about our new home. A lot. Luckily for those obligated to listen to me, though, there is one 25-hour period each week when I cease all Florida bashing. See, on Shabbat, I kind of love it here. Read the rest of this entry →
My son Zack was 2 when his big brother noticed him for the first time. One minute we were all hanging out on the couch in our pajamas; the next Benjamin was on top of Zack, giving him a bear hug. Every couple of minutes he’d get up, only to pounce on the little guy again seconds later.
The whole time (and it went on for quite a while) my husband and I sat there speechless, shocked and amazed and choked up by the sight of our autistic (and therefore seriously socially delayed) 4-year-old finally showing affection toward his little brother. And Zack, well, Zack just lay there, grinning like a 7th grade girl who’d just learned her crush liked her back.
It’s been almost four years since that lovefest and I’m sad to report there haven’t been too many repeat performances. I’m not saying my boys don’t have a relationship. They do, and in fact it happens to be a relationship that is very special and unique. Zack watches out for his big brother, and he’s the first one to yell out, “Good job, I’m so proud of you!” when Benjamin says a new word or learns a new skill. I know Benjamin loves his brother back, but unfortunately autism makes it pretty impossible for him to express that. I think Zack gets it, but still, I feel for the kid. It sucks to give and give and give without getting anything back.
That all changed recently, when Zack opened a Captain America doll, the Hanukkah gift his brother had chosen and wrapped for him. See, Benjamin’s school had this totally brilliant idea to take a field trip to the mall. Parents sent in cash and listed the recipients’ interests (superheroes for Zack and Elmo for Ayla, our youngest), and the students (with some guidance from their teachers, I suspect) went shopping for their loved ones.
As usual, Benjamin didn’t seem to register Zack’s over-the-moon, “Thanks Benjamin, I love it!” But what happened a couple of days later was just as rewarding. I walked into our playroom and found Benjamin holding Captain America and pressing the button that makes him talk. This, from a kid who barely ever touches anything in that obnoxiously fully-loaded playroom.
Obviously Benjamin’s choice wasn’t arbitrary. He liked that chatty, leotard-clad figurine, and I like to think he thought Zack would like it, too. I also like to think they’ll be playing with it—together—soon.
The minute I walked into my son Zack’s school Hanukkah party I began tallying the ways in which it was poorly suited for an autistic kid. My autistic kid, anyway.
Obstacle number one for Benjamin, Zack’s big brother: The table at the entrance, full of shiny made-in-China Hanukkah paraphernalia which Benjamin immediately started groping, much to the dismay of the bubbes from the affiliated synagogue hawking the stuff. Right after that I carefully steered my sugar-obsessed and impulse control-challenged child past the very tempting and very open cups of icing at the cookie decorating station. Then we hit the actual party, which was basically a bunch of tiny maniacs zooming across the athletic field (that’s right, an outdoor party in December—gotta love Florida living), throwing back latkes and diving into the foam pit to the beat of the blaring music.
Great, I thought to myself. A whole hour until my husband Moshe would arrive, which meant a whole hour chasing Benjamin up and down the field, hoping he wouldn’t get lost or freak out when he heard his least favorite noise de jour, i.e., someone speaking into the microphone.
The thing is, as hard as these kinds of events are for Benjamin (and as hard as it is for me to manage him at these events), we have to keep on attending. Not only because it’s unfair to make Zack to miss out, but because exposing Benjamin to new and over stimulating situations is the only way he’s going to get used to them.
For a while that evening I was very conscious of how all of his hard work, practicing at various birthday parties and field trips and big Shabbat meals, has paid off. Yes, I was on edge and resentful of the other parents who didn’t know how lucky they were to be able to casually chat with one another as their regular kids romped around. But Benjamin seemed to be enjoying the playground, not to mention the endless supply of Fruit By The Foot. It could be worse, right? Read the rest of this entry →
I’ve been thinking a lot about Rosh Hashanah during the last couple of weeks. First, in an out-of-character burst of preparedness, I made and froze a kugel and a tray of oatmeal date bars. Then, in an out-of-character burst of craftiness I sat down with my kids and did the Rosh Hashanah-themed sand art project the elderly women outside my son Zack’s school guilted me into buy. And yesterday, Zack came home with a book on apples he chose because he’s had the holiday on his mind.
So yes, we’ve been in the spirit. But the real reason the impending New Year has been especially palpable in our house is because our house is covered in honey. Literally. The cabinet pulls are sticky, our brand-new couch is streaked with it, and when the light shines through the sliding glass doors at a certain angle, the splotches the mop missed seem to glow.
See, while the rest of us have been busy cooking and crafting and reading, Benjamin, my autistic 8-year-old, has been busy scaling the kitchen counters in search of the jars of honey we’ve hidden (not very well, obviously). When he gets his hands on one, either because it’s 5 am and everyone’s sleeping, or I’ve run upstairs to put the baby down for a nap, or we simply flat-out refuse to get up from what we’re doing for the millionth time to trail him, he quickly unscrews the top and pours. Some ends up in his mouth. The rest, everywhere else.
We have, of course, thought about trashing it all, just like we did with the sugar and the ice cream sandwiches and the lollipops and all of the other edibles Benjamin has been obsessed with in the past. But for some reason, we’ve drawn the line at honey. We’re pushing back, refusing to let a hyper-impulsive 8-year-old dictate the makeup of our pantry.
So, like I said, I’ve been thinking a lot about Rosh Hashanah lately. Every time I bust out the mop, I’ll start thinking about how Benjamin is going to handle four long, structure-less days with no school. About how many messes we’ll be cleaning up. About how many angry outbursts we’ll have to manage. About how, when the woman in the shul office asked if I wanted a high holiday seat for any kids over 6, I shook my head no. About how when Benjamin was tiny, I was so excited for him to begin learning about the rich tradition he was born into, and about how that day has never really come.
Then, in an effort to keep it together, I’ll shift gears and start thinking about better things. About how the holidays have changed for the better. Like, for example, this past Passover, when he happily sat through both seders. And lately on Friday nights Benjamin’s the first one at the table, (sometimes an hour early, but oh well. “I want cup juice,” he’ll demand, and when Zack and Moshe belt out Shalom Aleichem he giggles.
And the truth is, last Rosh Hashanah, Benjamin wouldn’t have dared dip an apple in honey—he would never have touched a new food. In the past year he’s begun exploring his world—something I wasn’t sure he’d ever do. It’s messy, but it can be sweet, too.
We recently moved to Florida from Brooklyn. I grew up down here, so coming back shouldn’t feel like such a major adjustment. But it does, and I’m guessing that’s because all of my parenting experience up until now has been in New York, and I spend a good 80 percent of my time parenting these days.
I’ve been trying really hard not to focus on the things I don’t like about our new life, such as, for example, the eternal carpool pick-up line at my son Zack’s school. (Two-hundred SUVs and minivans idling for 45 minutes, every day? Really? They can’t come up with a more efficient system?). Instead I’ve been concentrating on the things I do like. High up on that list is the ubiquity of school uniforms.
Uniforms, generally khaki or navy shorts and a polo shirt, are required pretty much everywhere around here as far as I can tell—at public schools, private schools (including Zack’s Jewish day school), and even at my older son Benjamin’s tiny special ed program.
There’s a lot to love about these preppy little outfits, in my opinion. Not only are they totally cute, but they make getting out the door in the morning about a hundred times easier and wearing them means children have fewer opportunities to show off and compete. Read the rest of this entry →
When my son Elijah was born, my mother established a 529 College Savings Account for him and told me that she intended to make modest contributions every year on his birthday. I was very touched by her gesture and thought it was a lovely expression of the good values she passed on to me about the importance of education.
Six and a half years later, my mother continues those annual contributions. But my feelings about them have become much more complicated. You see, Elijah is autistic and his communication difficulties and other developmental delays are significant. He will probably never be able to live independently. Although much is still unclear about what his future holds, attending college seems increasingly unlikely.
I’ve thought about investigating whether 529 accounts can be used for other purposes (camp tuition? therapy dog?) but I haven’t been able to bring myself to do the research. I also haven’t talked to my mom about it. Does she continue to build a college fund because she is in denial? Are the contributions a sham she keeps up to avoid hurting my feelings? I’m not sure.
It feels so odd to have grown up in a strongly achievement-focused family and to now be walking down a totally unexpected path with my son. I try to accept and embrace Elijah exactly as he is but I also wrestle with feelings of shame and embarrassment. Jewish women like me are supposed to give their parents gifted grandchildren, right? Read the rest of this entry →
One thing I learned after my son Benjamin was diagnosed with autism is that raising a kid with special needs can be a very isolating experience. Sure, the couple of amazing autism mom friends I’ve been lucky enough to meet have helped tremendously, but most of the time I still felt like an outsider in the mainstream parenting world.
That all changed shortly after I started blogging about autism. Suddenly I discovered a whole community of other special needs bloggers I hadn’t known existed. It was like walking into a virtual playground full of parents who weren’t looking at me funny because my kid was making weird noises or gunning for their kids’ snacks. Everyone there was just like me.
Once in while I’ll stumble across a special needs blog I really identify with—one that, in addition to reporting on life in my alternate mommy universe, is Jew-y, too. I am by no means partial to these sites (the bond I feel with fellow special needs parents transcends any cultural barrier you could think of), but I do often wonder where their authors went to camp.
Here, a couple of the Jewish(y) special needs blogs I enjoy.
I’m Just That Way and That’s Just Me: This blog is by the honest, funny autism mom Dani G., who describes herself as a “A sassy mother warrior from Los Angeles raising a very sweet little girl in the Midwest.” Very sweet indeed—I loved the video of Little Bird (her blog pseudonym) saying the blessing over the Hanukkah candles. In Hebrew.
My Shtub: Sheva, a super-cute Lubavitcher with great vintage librarian glasses, blogs about crafting, the holidays, and her three kids—including Rozie, who has Down Syndrome. Spend a couple of minutes scrolling through her posts and she’ll be your hero. Besides making the most professional-looking mishloach manot you’ve ever seen and taking beautiful photos of her beautiful children, she’s also fighting cancer. This woman is just amazing.
Living With Logan: Logan, a twin and the youngest of seven, has severe food allergies, seizures, and high-functioning autism. Judging from the Christmas posts, I’m not sure if he’s a Yid—but his Bubbe, who writes the “Ask Bubbe” column, certainly is. Her answers to serious questions (“Help me Bubbe! I am drowning in repetitive questions from my child with autism. Any suggestions?”) are peppered with lots of oys and bubbelahs, but they’re packed with good tips, too.
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Kvell, verb `k'vell
To burst with pride, as over one's child
Kveller, noun `k'vell-er
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