Friday, September 30, 2011

X is for Xenophilia

X is for Xenophilia

Spell-check doesn't believe that word exists.

But says it does, so I didn't have to make it up.

Because I so would have.

Because for every phobia there should be a philia. A love to counter the fear, the hate.

Xenophobia is all around us, it seems, built into our psyches, a part of the genome, holdover from our collective ancestral heritage, our hunter gatherer days when strangers brought danger and death with them more often than not, competitors for scarce resources.

Behaviors are somehow adaptive, help the survival of a species or they die out.  (Yes, I'm an evolutionist. Because I am not crazy.) So once it served a purpose.

But we live in another world, now, where our tribe is actually the entirety of the human race. And we may find ourselves to have more commonality with someone from across the globe than across the street.

But it doesn't always come naturally, this comfort with the strange and different, it often has to be taught. And so I am trying to teach my sons through word and deed. Although Jacob, in his own way is also my teacher in this, being essentially colorblind and delighted by all that is new.

And while the official definition of xenophobia cites: "a fear or hatred of foreigners or strangers or of that which is foreign or strange," how it manifests here in melting pot America, often cuts around the lines of race, as much as culture, and where and how we cross them. Or not.

So, yes, I guess I'm talking about race again. And racism, of course. I think about it a lot. And since Mocha Momma asked us to stop being silent, I've been talking about it, here, too. Just the tip of the iceberg, but you have to start somewhere.

And I know a white girl talking about race is not always welcome, sometimes suspect. But that's OK, I'm willing to take whatever comes out of opening up the dialogue here. Because to remain silent is to collude with the forces of fear and ignorance.

I have a friend who has raised four children in this city, mostly because it is the best place for them to be exposed to the full panoply of humanity and cultures. She has given me wise counsel on how to counter the fear kids often have of difference, how to cajole them out of their nascent xenophobia.

Her friends and acquaintances are black white Asian mixed-race gay straight Jewish Christian Muslim abled and differently-abled. As are mine. As are her children's. As are my chidren's.

Especially because I have a child who is different, other, often seen as strange? Working hard to create an environment of tolerance and acceptance, a community that crosses lines, is not only a nice ideal; it is vital. And it's personal.

Xenophilia: [zee-nuh-fil-ee-uh]  — noun 
an attraction to foreign peoples, cultures, or customs.
— antonym: xenophobia

Just think for a moment about what our world would look like if I could be granted my wish: a magic wand that turns phobia into philia.


A small alphabetic and phonemic transformation, 2 letters in all.

But a universe of difference in meaning and manifestation. With the potential to transform the world.

Because at the core of war sits xenophobia, working its poison, seeking destruction of the different, the "other."

Because me, I'll take love over hate any day.

And the world that I want to live in, the world that I want for my children?

Chooses love, too.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And X? Hardest damn letter in the English language to come up with a good word to riff off of. Xylophone? Xanthosis? Xiphoid? Give me a break.

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Wednesday, September 28, 2011

Wordless Wednesday: Boys & Baseball

OK, for those of you who read my LONG (but hopefully amusing) rant yesterday, I figure you deserve a day off, so I'm going to be ALMOST truly wordless today.

Enjoy these pictures from the Mets game we took the boys to a couple of weeks ago.

Yes, they were deep into their losing streak and lay down like dogs before the Cubs (The Cubs! yeah, it was that bad) but the boys didn't seem to care and we all had a lovely time.

First time at the new stadium
Were our seats in Heaven? Yes. But at $3 a pop, who can complain?
Could the fielding have been any worse? Not likely.
I'm not sure there's enough branding and advertising in the stadium....
Jake LOVES him his baseball!

For all my Jewish friends and readers: L'Shana Tovah, enjoy the holiday!

For the non-Jewish or non-observant folks who live in New York City, and other highly Jewish areas: enjoy your relaxing FOUR day weekend!

For those of you scratching your heads: Rosh Hashanah, The Jewish New Year, the start of the High Holy Days begins tonight at sundown. And NYC schools are closed Thursday & Friday for the 2-day holiday.

And I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.

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Tuesday, September 27, 2011

Shoot Me Now (singing the health insurance idiocy blues)

Me? I am not by nature a brawler, a fight-picker; someone fond of my own angry self. I'm a conciliator, a peacekeeper. I really dislike confrontation, have been accused of avoiding it by sidling away, like a smiling crab doing the side-step.

But somehow, as I sit down to write a lovely "just write" post tonight? I can't do it. I have no lyrical in me. I find myself steaming and gunning the throttle. Again.

Maybe I need to start a theme day...  Cranky Rant Tuesdays.

My tag line? "Come visit my blog on Tuesdays when you want to feel better about YOUR life by reading about all that's gone pear shaped in MINE!"

Think it will catch on? Hmmm.

So, you may be asking yourself (those who aren't backing away slowly, that is)... What has my knickers all in a bunch? My panties in a twist? My... well, you get the picture....

Health Insurance idiocy. Also Big Pharma greed. And Chain Pharmacy stupidity and incompetence.

OK, now it's time for my Canadian/English/Irish/Australian/Norwegian/etc.etc. friends and readers to snicker and gloat. Yes, all of you who live in those godforsakencommunist countries that have - GASP! - socialized medicine.... go ahead, I'll wait.

OK, done now? Good, let's get on with it.

First the set up: My son Jacob takes a number of psychoactive medications. He's on a "cocktail."  Sounds fancy, but it's not. He's just... complicated in his neuro-biological differences. And so the help needs to be complex, too. Really.

And with a very intelligent intelligence at the wheel, prescribing and tinkering. We (very luckily) have that.

And the 3 different medications he's currently on (very low doses, all, don't worry)? Are keeping him rolling along beautifully right now. Calm, happy; NOT riddled with anxiety and gnashing his teeth; NOT crumpling into a sodden weepy heap over a dropped pencil. And also WITH increased concentration and attention; able to really listen and learn better than ever. (Spitting over left shoulder 3 times and warding off the evil eye.)

So, we recently needed to change health insurance policies (due to an expiring COBRA situation). My husband and I are both freelance / self-employed. We pay for our insurance ourselves. You can see where I'm going here, yes? There really are only lousy overpriced policies available for people like us. And we picked the best of that bad bunch. But still...

We are now in the situation where the medicines that Jacob has been prescribed and HAS BEEN TAKING, the ones that are demonstrably working for him, are needing to be "pre-approved" by the insurance company.

Yeah, that's as much fun as that sounds.

And the approval process? So NOT what was described to me by the pharmacist: "Have your doctor call this number and explain why it needs to be, and they'll approve the medication." As if.

When the doctor called me back after my frantic message, I could hear the stress, the weariness in his voice. He told me that it's not just "a phone call" that's required, but rather it's TEN phone calls. And being transferred from department to department, and being put on hold, and hung up on. And then calling back, and being transferred again.

"They make it hard on us doctors on PURPOSE, to discourage us from prescribing certain medications -- the newer, still patented ones. They think we'll give up and pick something older and cheaper -- even if it's inappropriate for the patient -- just to avoid the hassle and time drain. It's harassment and coercion, pure and simple."

And then this time it wasn't just a conversation, but FIVE full pages of paperwork he had to fill out - questionnaires and ESSAYS to write to justify giving this medication over others which are in the same CATEGORY as the one the doctor had prescribed but are truly DIFFERENT medicines.

Because a bunch of accountants' opinions about what medicines my autistic son needs to be taking count SO MUCH more than those of his highly regarded pediatric psycho-pharmacologist who has been practicing for a bazillion years and regularly lunches with and picks the brains of the guys who literally WROTE THE BOOKS on most childhood psychiatric & developmental issues and are at the forefront of all the cutting edge research.

(Sorry, I shout a lot in ALL CAPS when I'm truly peeved. And I'm truly peeved, in case you hadn't noticed.)

This was all today.

Yesterday it was me showing up the local D-R pharmacy counter at 6:15 to pick up a medication we had run out of, that Jake needed THAT NIGHT to find a long line of unhappy people, EVERY ONE having trouble with their prescriptions being filled properly.

And I was only AT the motherfucking D-R because they (and other big chains like them) had effectively closed down all the small family run pharmacies in the nearby neighborhood where the pharmacist KNOWS you and gives a rat's ass about your family.

Now, being all sensible-like, I had called at 5 PM and spoken with the pharmacist there to make SURE they had gotten the script called in and that I could pick it up right away. I was told yes, definitely in. He had me hold on while he checked to make sure it was in stock (it was), told me they were busy and to come for it after 6. Took Jake's birth date info.

But when  I get to the front of the line? No filled bottle waiting for me, no prescription sitting in the in-box waiting to be filled. Seemingly no record of it being called in at all. Questions of my sanity ensued... am I CERTAIN it was THIS D-R and not the one up the road? YES!

And not only had they no record of my doctor calling in the prescription, but they had no record of my son Jacob in their computer. Which is quite odd since we've been having prescriptions filled there since the boys were BORN, 9 years ago.

Oh, what was that? Since they merged with another Pharmacy Giant and put in a new computer system a few weeks ago it WIPED OUT all their patient and medication data and now EVERY patient is considered a new patient and they have no history on anyone. Nice going, guys. Well done!

Would I please step aside and wait while they try to find Jimmy Hoffa my son's prescription.

Finally the pharmacist that had taken my call and gone off shift at 5:30 returned the page and straightened it out... the prescription (unfilled) was sitting on the back counter, face DOWN. Because it couldn't be entered into the computer, because they didn't have Jake's info in the computer, because he's a "new patient."  Riiiight.

So it's going to take ANOTHER HALF HOUR to get him into the computer and get the prescription filled. And can I stand over there with the growing crowd of fuming customers to wait, please.

And then? After that fun-filled 1/2 hour?

THAT'S when I find out that it's not automatically covered on our new, stinky plan. That it needs to be "pre-approved" with a call from my now-closed doctor's office to the insurance company's bean counting gate-keepers. 

Or? I can pay retail... $266.


And do you know? It's really not a new medication at all. It's a new formulation of an OLD one that has been around for years. But someone figured out how to make a really good time release delivery method for it. So THAT'S the part that's patented. That's why it's so much $$.

And if my son is going to take this medication, he really needs a steady supply in his blood stream, I really can't give him 6 pills a day at four hour intervals, waking him up in the middle of the night for meds now, can I?

So, yes, he NEEDS this expensive time release formulation. Which is THIS expensive because... they think can get away with it.


My son needs his evening and morning dose.

I get them to break up the prescription and sell me 2 pills at retail.

I go home, crisis averted.

And yes, I may have exploded a few times in the drug store. Especially when they pretty much accused me of hallucinating the 5 pm conversation with their other pharmacist.

And, yes, some of this is my own damn fault for waiting until the very last minute to get the refill, turning something that should have been an annoyance into a crisis. That's ADD's calling card there, folks.

And did I mention that during all of this the kids were being watched by the upstairs neighbors, because Jake was still finishing his dinner and they really didn't want to come out to the store with me, and I was only going to be gone 15 minutes?

Yeah. I owe them. Big time.

OK, rant essentially over. Jets cooling now....

And that concludes today's edition of Cranky Rant Tuesdays at The Squashed Bologna.

Tune in next week folks, to hear all about the "check engine light" in our 1997 Toyota that just won't stay off.

(Don't you just wish you were me, now?)

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Monday, September 26, 2011

Choosing kindness

I find myself having to fight my over-critical mind these days. A lot.

With my kids.

With my husband.

And especially with myself.

This Sunday morning, things went a bit awry with Jacob's just-woken-up-and-kind-of-groggy first-thing-in-the-morning pee.

"I'm wet" he called out to me from the bathroom. As I helped him strip off his soggy PJs, I answered his request for "dry pajamas, please Mom" with the rejoinder that since he was getting up anyway, it was best to get dressed for the day, that he should go to the living room and I would bring his clothes in there.

"I want pajamas" he said. Again.

But I didn't listen. I got all practical on him, reminded him it wasn't HE who did the mountains of laundry every week, and I'd be bringing him soft shorts and a T-shirt which were just like pajamas, anyway.

I stepping into the living room, clothes in hand, to find tears streaming down my sweet boy's face. "I want pajamas, Mom" he wailed, "I want to play computer in pajamas."

Now, I knew some of this was autistic rigidity. That the recent tradition of my early-rising boy getting to play undisturbed on the computer for an hour or so while the rest of us lazy sods got an extra hour of sleep on Sunday mornings was somehow tied into wearing his pajamas in his mind -- while getting dressed was probably tied to being rushed through his morning breakfast and hustled downstairs to meet the school bus.

And like a good Autism Mom, I usually try to break up rigidities before they ossify. And just as I was about to get all hard-line with my boy I looked into his eyes, saw how much this meant to him, how much he didn't understand about why I wanted him in clothes.

And I just couldn't do it.

How important was this battle, anyway?

And isn't there something thoroughly delicious about lounging around in pajamas of a Sunday morning? And something about donning clothes that says one has to get down to business and be productive?

Jake understood this. He wanted a REAL Sunday morning. In pajamas.

I hugged him.

I dried his tears with the hem of my nightgown.

I brought him a clean set of PJs.

I set aside my critical mind, the one that said that was ANOTHER pair of pajamas I'd have to wash on Tuesday.

So what.

I chose kindness.

Today was a busy day full of to-ing and fro-ing and the thousand little errands that just suck all the time out of a day.

Jake had an early morning dental appointment, so I had to bring him with me to drop Ethan off at school, then take him on the subway all the way downtown to HIS school after the dentist.

I had groceries to buy, prescriptions to drop off, prescriptions to pick up. I had to pick up some cheap bathmats to replace the ones the cat keeps peeing on. Etc. Etc. Etc.

You know the kind of day.

In the middle of of it all, I am power-walking past the fancy-shmancy make-up store bluemercury on Broadway, when I suddenly feel compelled to stop in to shpritz myself with "Beach" (yes, the same perfume & store that inspired my Coppertone story).

I am, as usual, make-up less and slightly bedraggled (though, I proudly brag, freshly showered, whoo-hoo!) It is empty inside the store, a slow Monday, so the crew eyeing me up and down very politely ask if I would like a free "freshen up" with the make-up artist.

I'm about to decline, no time, no inclination, when I take a pause. My critical mind is telling me I have 997 errands left, it is telling me that even with all the make-up in the world I will still be overweight and 51 years old. That no one but the cat and my kids is going to see me in my lovely done-up state (the effects having long worn off by the time my husband gets home late from work).

But then I shove all that aside and I think: "Why not?"

I think: "Someone wants to give me something. I get to sit and be pampered for five, maybe ten minutes. Why the hell not?"

So I say "Yes."

"Yes" to the universe.

"Yes" to me.

And, of course, it turns out not just about how a little concealer, eye shadow and lip gloss can make me look like I actually get enough sleep.

It turns out that, if you listen, everybody has a story.

I sat and chatted with the make-up artist, a lovely man named Tony, while he did his magic.

And, me being me, I'm talking about my kids. And autism.

And wouldn't you know that Tony has a young cousin on the autism spectrum, a girl. And wouldn't you know that he has a brother with cerebral palsy. So he is a special needs sibling, himself.

And we talk about group homes and caretaking and independence. And elderly parents.

Which proves you can have a real conversation anywhere, even in this chancel of artifice.

And, yes, I buy a few small things - that concealer really was MAGIC. (You want to know? T. LeClerc. Tres French. Tres chic.)

And I walk out of there feeling, well, refreshed. Glad I took a moment for me, a moment to breathe, to connect with a stranger. Ready to take on errand number 214. 

And then, at the supermarket, when the guy in front of me was twenty cents shy of being able to pay for his groceries, I was happy to pull out a quarter, spot him the small change.

Finding the inner critic quieted.

Being kind to myself, and flowing that out into the world. 

I am linking this post up to Be Enough Me Mondays over at the wonderful Just.Be.Enough.

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Saturday, September 24, 2011

SNSS: A Tale of Two Brothers

Today's SNSS guest, Laura Shumaker is the mother of three sons, one of whom, Matthew, is on the autism spectrum. While she is more of a veteran, no longer quite in the trenches with us, as her sons are older, she does remember it all, quite clearly.  

If her name sounds familiar, it is because you may have read her wonderful memoir: "A Regular Guy: Growing Up With Autism" about life with her son, Matthew. The book's sub-title, "A family's story of love and acceptance" lets you know exactly where she is coming from. A beautiful place. 

Besides this book, Laura writes an autism blog for The San Fransisco Chronicle's online site SFGate, at her own eponymous site, Laura Shumaker, as well as for a number of other venues, including, NPR Perspectives, and 5 Minutes for Special Needs. 

Her work is inspirational, the mission statement on her blog: "launching teens and young adults with autism." And this is exactly what I need to hear: tales of launching, of success.

While her sons have, by now, grown into young men, the story Laura chooses to share with us here comes from a few years ago, when her son Matthew and his NT brother Andy were both (yes, BOTH) in college. So come, now, read, and be inspired:

A Tale of Two Brothers - by Laura Shumaker

It was an icy cold morning our Northern California town. I tapped lightly on my son, Andy's, door to wake him for an early morning flight back to the east coast, where was freshman in college. During his three week winter break, my husband and I were struck by how little time he needed to spend with us.

Though he was perfectly pleasant, he was always in a hurry to be anywhere but home.

"Have you had a meaningful conversation with him?" I asked my husband after a week and a half, "I sure haven't." "No," he sighed, "but he's thrown me a few lines." Paranoid that we had gone wrong somewhere along the way, we polled our friends in similar circumstances, and they assured us that his behavior was normal.

"Join the club," they laughed, so we relaxed and made ourselves available for conversation and meals, and were grateful for the scraps that came our way.

It was clear, however, that Andy couldn't wait to get back to school, so much so that I was ready for him to leave.

Just as I took a quick swig of coffee before our trip to the airport Andy stepped out fully dressed, packed and ready to go. The night before, he had printed out his boarding pass and arranged for a ride from JFK to his school in Connecticut.


It was quite a different scene one week earlier, when Andy's 20-year-old brother Matthew, who has autism, prepared for his trip back to Pennsylvania, where he attends a special school.

"Mom," he had said the night before his trip, "I need to make pancakes in the morning."

His flight was at 7:10.

"Of course," I said. It was an outrageous request, but one I'd anticipated. Travel days were hard for Matthew, and sticking to his routine would increase the odds of the day being a successful one. So we were up at 4:15, setting his place at the table and warming the griddle.

After breakfast, he counted the money that he had earned during the break doing garden work, and left it piled neatly in the drawer next to his bed. It was no use telling him to put it in a wallet or the bank.

"I like the dollars stacked," he said, "and we're not going to talk about it anymore."

I looked to see if he had cut his bangs the night before, another one of his pre-travel rituals.

Oh, man, he sure did.

Matthew is high functioning but socially inept, and it's necessary for him to fly with a helper. Today, he would be flying back to school with a young woman who worked at his school. She had flown Matthew home and had been touring California during his stay.

During visits home, Matthew, a self-proclaimed landscape specialist, is obsessed with garden work--mowing, blowing and edging with precision.

When he is not doing it himself, he studies other garden crews in our neighborhood and around town. They all know him and are kind to him, as are the neighbors for whom they work.

This year, after three or four days, he grew tired of gardening and announced that he was ready to hang out with his friends. The only problem is he has no friends.

"You can go to the movies with me and my friends," Andy offered as he always does, but Matthew refused.

"I have my own friends," he said proudly, and proceeded to call people who had been kind to him five years ago during his first and only year in public high school.

He called them over and over and over. Their mothers took most of the calls, and I'm sure they wondered why I didn't put a stop to his obsessive behavior.

"Matthew," I said, "calling once or twice is fine, but if you keep calling, that's bothering, and you'll make people angry." I told him that when I was his age, a guy I liked called me too much and it drove me away.

"But did you still think he was nice?" Matthew asked, his lip quivering.

Before I could answer, the sound of a lawnmower around the corner distracted him, and with the promise of a friendly garden crew he was off with a grin. I could exhale for the moment, but I remained constantly on edge until delivering him into the hands of his travel companion for his flight back to school.

"Having a brother like Matthew will make Andy a better person," said well-meaning friends when Matthew was first diagnosed with autism at age three. While their words were meant to comfort and encourage me, they implied that tough times were ahead for baby Andy, which strengthened my resolve to protect him.

Andy was five when I first noticed playmates in the park teasing him about his brother's hand flapping, and I flew to his side, ready to take on the little jerks.

"He has a brain problem," Andy was explaining to them cheerfully, "He can't help it."

The boys nodded anxiously and backed away.

"Andy," I said with a lump in my throat, "I'm so proud of you. That was very loyal." "Thank you," he said, "I'm proud of you, too."

It wasn't long, though, until the novelty of educating his peers wore off, and by the time he was seven, I watched Andy's exuberant explanations turn defensive, and I swooped in with suggestions of snappy comeback lines for him to use in a pinch.

Takes one to know one


Get a life!

But by the time he was twelve and entering his middle school years, Andy got tired of using all of the clever lines as Matthew's impulsive behavior and public meltdowns increased.

"Andy needs a break," I told my husband. "Why don't you go to his game today, and I'll stay home with Matthew." Andy seemed pleased with this arrangement, but when he came home, he looked strangely sad for a boy who had scored three goals.

"I had such a great game," he said. "I wish you could have been there."

Soon after, Andy stopped having friends over and started refusing invitations.

"The last time I went to a friend's house," he said, "they asked me why we never hang out at my house. I don't want to say 'because I'm tired of apologizing for my brother.'"

"Would you like to talk to someone?" I asked, "or maybe join some kind of a sibling support group?"

"Or could I just talk to you sometimes?" he replied quietly, "and sometimes can we do stuff-just you and me-without Matthew?"

"Oh, of course!" I said, choking up. And, wouldn't you know it, the next day Andy had a slight fever, but we decided he was well enough to go to Pier 39 with me for the day.

The next few years with Matthew were especially hard, and Andy prided himself on being one of the few people in the world who could calm Matthew down when he was upset, and on being the one who could make Matthew laugh the hardest.
"I've got him," he would say when Matthew climbed off the yellow school bus in tears. The two would go out to the mulberry tree in the back and sit on opposite branches until Andy got Matthew to smile. When they walked back in the house, Andy flashed me a secret victorious smile, and I put my hand over my heart in reply.

When I was having doubts about whether or not to send Matthew to a residential school, it was an innocent comment from Andy that helped me make my decision.

"If he goes, maybe both you and Dad can go to my games."

A month to the day that Matthew left for his school in Pennsylvania, Andy, who was now in ninth grade, burst into the house after school looking nervous but exhilarated. He asked if I could help him clean up the house-now.

"Luke and Greg are on their way over!"

I couldn't even remember the last time he'd had friends over.

Within minutes, the clutter of the house was stacked on my bed, the house was vacuumed and the toilets cleaned. I was shoving the mop back in the closet when the doorbell rang.

"Hi, guys," I said, grinning like a modern June Cleaver. "He's back in his room."

Before I could bake the cookies that I had thrown together in my manic state, the boys rushed out laughing and announced they were walking downtown. They flew out the front door, and I burst into tears.

The morning Andy was born, I still thought Matthew was just a regular two-year-old, and I worried whether I could ever love this second baby as much as I did the first. The feeling evaporated the moment I was alone with Andy for the first time in my hospital room, kissing his fuzzy baby head and studying his chubby hands.

Now I had not just Matthew, but brothers, and I imagined the two growing up together. Andy would look up to Matthew, and learn from him. When they were in school, the teachers would say, "Oh, you're Matthew Shumaker's brother!" and Andy would beam.

They would drive around together as teenagers, have the same friends, and I would raise them to be loyal to one another. They might go to different colleges; that would be healthy. But wouldn't it be great if they lived near each other as men and if their wives were friends?

I could never have known that Andy and Matthew would blossom at about the same time-3000 miles apart. I couldn't have imagined that Matthew would be an autistic young man, and that I'd be grateful that he was living and learning with teachers who understood him and valued him.

And I could never have guessed that Andy, after suffering through his reclusive period, would experience a joyous rebirth as he entered high school and that he would reclaim the class clown status that had eroded since grammar school.

He would enjoy sports, friends and classes. By senior year, his homebody stage would be a distant memory as he made plans to go to college at Yale.

When I drove Andy to the airport after winter break, he asked me if I had heard Matthew speak Spanish.

"No. He speaks Spanish?"

"He pretends to speak Spanish," Andy said with a smile, "when he hangs out with some of the garden crews."

"Oh, no, that's terrible!" I said, "They must think he's racist or something!"

"Come on, Mom," he laughed, "They think it's hilarious. They can tell he' know."

Andy jumped out of the car, dragging his huge duffel bag behind him.

"I love you, Mom. Thanks for everything. And don't worry so much about Matthew. He'll find his way. And you know I'll always look out for him."

He walked into the airport, and I drove away, conscious that my 18-year-old son had just thrown me a line. But he meant it.

And I grabbed it gratefully.


Reading this post,
 my heart aches, nearly breaks open with the hope that some day Ethan will come into an easier relationship with his brother the way her Andy has.

I also had the pleasure of meeting Laura in person at the Special Needs Parent Bloggers mini-con that took place within BlogHer11 this summer. And I can state unequivocally that she is as lovely and encouraging in person as she is in print.

So having read this here, you are certainly going to want to read more words of wisdom from Laura. You'll find her on her website, Laura Shumaker, and herSan Fransisco Chronicleblog.

First, you simply MUST read this incredibly touching post written by her NT son Andy about his brother.  Then, if you haven't yet, you will want to read her whole book, a taste of which is here on her site.

Also you will want to read her San Fransisco Chronicle blog for the community information as well as personal stories, especially this VERY important post about how to deal with the POLICE. This information is vital, potentially LIFE SAVING when you have a large son like I do.

Finally, you should also go "like" Laura on her book's Facebook Fan Page. and by all means follow her on Twitter, too!  

Thank you, Laura for sharing your wonderful family with us here today.

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Friday, September 23, 2011


Yes, I know that elderly widows outnumber elderly widowers on an order of perhaps ten to one. Or more. And I know that elderly widowers who are not terminally crotchety or hideously homely have ladies ten, twenty years their junior circling like bees 'round the hive. Carrying casseroles.

But, still... my lovely, loving, eminently lovable, recently widowed 89 year-young mother is lonely. She likes male companionship. A friend to laugh with, to watch old movies with.

My mother wants a man. Someone to grow older with. To spoon with, a counterweight on the other, colder side of the big bed.

But I must warn: my father was a hard act to follow. You’ll need a sharp brain, good taste, a lively sense of humor, exercised daily.

And? Mom sits on the decidedly arty, bohemian side of the fence. Conservatives need not apply. Some time spent on the couch would be helpful.

Also note: she will not be cooking any casseroles. She WILL whip up a nice cup of hot cocoa in the microwave, and order up a mean takeout, like the true New Yorker that she is.

Speaks a bissel Yiddish, but loves her lobster; would be folk dancing if her knees worked better. Feisty, genuine, she’s the polar opposite of a little old lady. Curses like a sailor, loves babies and puppies and Matisse. Also? Mash reruns, exotic cuisines, fireflies and full moons.

She is kind to strangers, endlessly curious, and will beat the pants off you in a friendly game of anagrams.

If you don’t have passion for life? Don’t bother calling. There's snow on the roof, but still flaming bright embers in her heart.

That's my Mom. She's still got some kick in her yet, nowhere near ready for the bucket.

So if you're a New York gentleman of a certain age who fits this bill? Don't be a stranger. Get in touch. And consider yourself a lucky, lucky man.

This post is based on the prompt, “Write a personal ad, looking for love for your character or someone in your life” from Write on Edge. I didn't think I was going to do the prompt this week, was drawing a blank. Then I spoke to my mother today, and it came to me in a flash.

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Wednesday, September 21, 2011

Sand Trap Weekend

This weekend I spent too much time caught in the sand trap, mourning the family I thought I should have instead of enjoying the one that I actually do.

And, truth to tell, it's pretty hard to enjoy my family right now.

Jacob is getting on Ethan's every last nerve, every minute of the day they are together. And Ethan is being mean to his brother. And there's only so much I can do.

One has Autism and the other doesn't. It is what it is.

I fled the coop for 4 hours on Sunday afternoon to attend a family event (for my husband's family, so he couldn't say no to watching the boys for the afternoon) and the boys just sat around the apartment with screens of various sorts on a beautiful day.

I tried, I tried, really I tried to get Ethan a playdate for the afternoon, but it didn't pan out, so our wonderful upstairs neighbors (who have nearly adopted the boy) having other plans, deposited him back home at 2:30, and the idea of going anywhere with his brother brought tears and moans and groans of "I HATE him, he ruins EVERYTHING mom!"

So there I was at a lovely old world, old school, top tier French restaurant in NYC eating and drinking up a storm with the female contingent of my husband's large and embracing, enveloping family (we affectionately call them the Borg Collective for a reason) but still fielding phone calls from home, pulled in two directions and fully present in neither.

My usual state.

This weekend I struggled to be a good enough mother. Struggled and failed. I didn't have the energy, the herculean energy it takes to pull on the happy face and make fun happen for our family.

We used to be able to just roll out and spend the day together. Jake was a bit odd, but often lost in his own internal little world. We had to make sure he didn't wander off, but for a spectrum kid he was pretty easy to take out into the world.

But now that he wants to interact and talk all the time, he requires a lot more energy and focus. He still loves going out, but now I have to be completely vigilant, to keep him from going up to everyone he sees and starting strange conversations.  And he so drives his brother 'round the bend.

I am sure some day Ethan will develop more distance, more compassion, but right now he is all rage and annoyance. And I don't want to be here in the middle of it. Not at all, not even for one minute of it.

And so I dread the weekends. I get a stone in the pit of my stomach as 3:45 pm on Friday rolls around, knowing  the boys are mine and more or less together until 6:45 am on Monday.

I ask too much from my friends, the mothers of Ethan's friends. I am always foisting him off on them. And if those kids want to come over, we're really limited to the ones with high tolerance for Jacob.

I am tired of whining about this, tired of complaining. Also I am worried that I am making my wonderful son Jacob sound like a burden, which he never is.  He is lively and delightful and full of light. But exhausting. Yes exhausting, always, too.

And the biggest issue is the dynamics between the two, so far from healed, so far from resolved. Maybe worse now than it's ever been, I can't really tell, I have no perspective.

So I separate and separate and separate some more, as much as I can. And still at bedtime tonight Ethan asks when we'll make enough money so we can get a bigger apartment and he can have his own room, asks if I could send Jacob away for a day "Send him on a trip to D.C., Mom." so he and I can have a day together, at home just us "because I almost never get time at home without Jacob around. "

And also the separateness feels just too separate, feels like individuals and not a family. I want a family unit, damn it, something that feels cohesive and whole. Not just this hole in my heart. Not a big one, but a small one, drippity leaking, draining the joy out drop by drop.

It's 4 am and I have not gone to bed yet. Sitting here ruminating and writing. Because if you don't go to bed, tomorrow never comes, right?

Damn, got that wrong too.

Just Write
And I'm linking this up with Heather's "Just Write" Tuesdays meme at The Extraordinary Ordinary, even though it's not the lovely little slice of life I wanted to write tonight. Oh, well.

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Sunday, September 18, 2011

Blog Gems: School Daze

Hey boys and girls! Yes, it's time for the Blog Gems - Air Your Archives link-up again!

As our kids have just (FINALLY) completed their first full week of school here in New York City, and the first salvos of the homework wars have been fired off, I'm thinking a lot about school. So I figured, why not make that the theme for this fortnight's Blog Gems linky?

So, because it's on my mind, now it's on yours... this week's prompt is: School

School... yours... your kids'... Elementary... High School... College... your workplace (if you're a teacher)... childhood memories of your own school days... back-to-school... graduation...  anything related to SCHOOL.

Now dive into those archives and come up with something... I know you've got one! The post you wrote about the time your kid's school REALLY pissed you off? That's the one I want to read. Or the one about running into your old 5th grade teacher in a silver lame bikini on a gay beach. That one, too. It's all good. 

NOTE: try to dig deep into your archives, if you've got them. Your regular readers will have read last week's post anyway. So go back a year  -- or two! -- find something in the attic that not enough people read, or that you just simply adore. This is your chance for fresh eyeballs... go for it!

If you've done this before, you can just skip on down to the linky at the bottom.

If you're new here: Welcome, read on....

Come! link up! Tell all your friends! I promised my friend Jen her lovely linky meme would be alive and well when she brings it back home to her blog, The King and Eye, some time in the fall (or whenever she's ready). So don't make a liar out of me.

About Blog Gems (from Jen):
How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow MY blog for now (and Jen's blog once I hand her back the reins) to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code here). Putting the button on your blog is not a deal-breaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

4. Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help spread the word by telling your blogging friends, either by tweeting this or blogging about your entry.

The rule is that you're supposed to select a post from your archives that fits the prompt... but it's a lenient rule, and broad interpretations are welcome, so be creative!

And here's what I have to add:
It's a wonderful chance to get fresh eyeballs on your great posts from the past. People tend to put in recent posts because they're freshly in our radar, but I would encourage rooting around in your archive and dredging stuff up that's deeply buried, if you can.

So come on... link up a school-related gem from the past.  Aaaaand Go!

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Saturday, September 17, 2011

SNSS: Noah, my Brother

Today's SNSS guest poster is a mom and she's a blogger, but she's not a special needs mom blogger. What Lyz Lenz is, instead, is a SISTER of a very special brother. 

Lyz blogs, fittingly, at where her tag line reads: "Eschewing pants, eating McNuggets and getting knocked up." She is a wonderful writer: smart, insightful and very, very funny.  

Calling herself a "Social Media Ninja" she also manages social media and writes for a number of other sites as well, including YourTango where she is a community manager (busy woman).

Motherhood is a recent development for her (her baby girl is not yet even one) but as an older sister she has been taking care of people in her family for a long, long time. Especially her youngest brother, who has Downs Syndrome as well as further complicating issues. 

Come read her here, as she writes movingly about her brother Noah, and his special place in her family:


Noah, my Brother - by Lyz Lenz

I have seven siblings. One is perky with curly hair. One is hilarious and likes to play with legos. Two are good at art. One dedicates her life to serving others. Another dedicates her life to giving people great hairstyles. I have a brother who is in the Army and can run a mile in six minutes. I have a sister who is the best message therapist I’ve ever met. She’s also the most sarcastic person I know. And then there is my youngest brother, Noah.

Noah loves to snuggle. He loves to watch Toy Story and collect army men. He once got kicked out of school for dancing on a table. He also got kicked out of school for yelling at a teacher. Noah is sweet and a little spicy. And among the many things that he is, Noah is also Downs Syndrome.

But it’s a little more complicated than that. Noah also has other disabilities. He is 15 and he can’t talk and just learned how to go to the bathroom by himself. And as much as I hate it, those are the things that define him to most people.

To most people, Noah is not my brother who got kicked out of school. He’s not my brother who carries around a Sheriff Woody doll. Or the brother who gives the best hugs. To everyone I meet he is Noah my disabled brother.

But to me and my siblings he is so much more.

My brother Noah was born on June 12, 1997. He was three months early and was so small my dad could hold him in the palm of his hand. But my dad didn’t do that. He carried him with both hands, cradled against his chest, while all seven of us siblings circled around so happy that Noah was part of the family.

Two weeks after he was born were told he had Downs Syndrome and six years later, we would find out that he also suffered from additional complications that meant he’d never be able to hold down a job or live on his own.

I was thirteen when Noah was allowed to come home from the hospital and I would often sit by his crib, watching him breathe. Making sure he was okay. When he woke up, his blue eyes would watch the ceiling fan circle round-and-round his head.

Maybe he will make fans one day, I thought before remembering that the doctor had said he may never have a career. I ran downstairs and crawled into an old sleeping bag, hiding my tears and my horrible thoughts. It doesn’t matter how good he is, no one will give him the chance.

Before Noah was born, I had known a girl with Downs, her name was Janna, and every time I saw her she would tell me about her boyfriends. “I kissed them!” she would yell and I would sneak away. “Go play with Janna,” mom insisted. But I hated every minute of it.

I hated the way she smelled of mothballs and body odor. I hated the way she laughed at everything and hugged me. I hated that she was twenty and could barely read. Most of all I hated the way people looked at her as she loped along, oblivious to their scornful stares.

I didn’t want Noah to be like that, but most of all I didn’t want to think of him like that. I fell asleep in the sleeping bag and woke up to my mom kissing my forehead. “It’s okay to be mad,” she said. “I know you love him.”

And that’s what it is to be a sibling of someone with special needs—you exist simultaneously in a place of love and acceptance and frustration and guilt. But I wouldn’t ever choose anything different.

I’m older now and so is Noah. But I still get angry. I get angry when I don’t know how to talk to him, when I have a hard time understanding what he wants. I get angry when he comes for a visit and then leaves and I feel like I didn’t get a chance to tell him that I love him and what he means to me. And I know he gets frustrated too.

One by one, his brothers and sisters are leaving home and leaving him. He uses sign language to tell my mom to call us. And when he sees us, he just wants to sit and hug. And I do sit and hug him, but it’s never long enough and that makes me mad too.

Noah is so many other things. He’s the kid who tried to flush the dog down the toilet. He’s the kid who can eat his weight in Cheetos. He’s the brother who influenced one of my sisters to become a teacher and another to become a social worker. He’s the brother that taught me patience.

He’s also just Noah, my brother.


Reading this post, I was so moved by the loving relationship between the siblings. Noah is lucky to have so many caring brothers and sisters, and I am touched by how lucky THEY feel to have him in their lives, too.

Also this sentence: "And that’s what it is to be a sibling of someone with special needs—you exist simultaneously in a place of love and acceptance and frustration and guilt." just gripped my heart. Ethan is not so much in that place of love and acceptance yet, but I sincerely hope he will be some day.

Having read these beautiful words here, you're going to want to follow Lyz back home to her blog, But I gotta warn you, as poignant as Lyz is here? She is mostly side-splittingly funny and sardonic there.

If you want to start with one of her more serious posts, go to this lovely one about another brother (which includes some beautiful moments in his relationship with Noah, too). And read this beautiful post about what coming up out of that all-encompassing first month of mothering feels like.

And for the funny? Where do I start... try this hysterical letter to future babysitters of her daughter, or this post about her obsession with all things related to crime and criminology.

Besides keeping her own blog, Lyz is also a Community Manager at YourTango where she writes about all aspects of love and relationships.

Finally, you can find and follow Lyz on Twitter as @lyzl, where she is as fun and funny as you would imagine.

Thank you so much, Lyz, for this beautiful post. You are a brave and honest writer and I am honored to have you here.

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Thursday, September 15, 2011

...and that's why I'm a Twit

(as in some fool who likes to tweet on Twitter, not an upper-crust British nitwit a la Monty Python.)

Hello, my name is Varda and I am a Twitter addict.

OK, I've been cutting down some lately, as I have recognized that it can get in the way of, well, that (highly over-rated) "real life" stuff. When your son complains that you "Love your computer more than you love us!" you know it's time to scale back a wee bit.

A year and a half ago I didn't know even know what Twitter was. Well, I mean I'd heard of it, but hadn't given it much thought other than as that "wacky thing" some folks do.

Now I can't imagine how I wasted my time before Twitter. It's so efficient, so effective at sucking all the "spare time" out of my day.

But also, truth to tell, useful.

Sometimes I just want to shout into the cave and hear a voice back that is other than my own, echoing. Sometimes I have important things to say to the universe (well, to the approximately 1800 souls in it who follow me, that is), while other times I just want to share my momentary thoughts with at least the illusion that someone is listening.

Like today.

I was sitting in the car waiting for the clock to strike 11 so I could leave (following the arcane rules of the NYC Alternate Side Shuffle... if you live here -- and especially if you own and street-park a car - you understand; and if you don't, be glad you don't have to) my brain just bouncing around in the void.

So I sent out this tweet:

And got this back:

And that's it. Just what I needed. To know I'm not alone.

And then when I got home (car legal, good 'til Monday at 9:30), just checking in, I read this:

and decided to click on over to read her post. It was about aggravation vs. thankfulness and contained this poster:

A timely reminder if ever there was one, as I have been uber-cranky lately. Forgetting to feel grateful. Forgetting all that I am always hammering home to Ethan the complainer, reminding him how lucky he is.

I can hear my own voice yakking away at him, telling him: "The key to happiness is not how MUCH you have but how GRATEFUL you are for whatever you do have" in response to his whining for this or that toy he has seen advertised on TV and MUST HAVE or he will be miserable forever.

I remember when he was little, maybe four, and was being all fussy about his clothes, wanting to wear a very specific something that was dirty in the hamper, declaring every other possible item terrible, I just lost it with him. I was yelling about how spoiled he is, about how in so much of the world kids have only one or two sets of clothing that they own and THAT IS IT. And if they want them clean they have to wash them by hand, every day, maybe even in a river miles from home.

And he got a quivering lip and I thought "OK, maybe I'm laying it on a little thick" but he then said to me with so much compassion: "Oh, Mommy, that is just SO sad. Can I send them some of my clothes?"

And we hugged for a bit, and talked about what we could do to help those less fortunate than ourselves.

And that sweet memory of my son, and remembering to be grateful for all that I have in my life? Thanks to Twitter and the random moment I popped on to read.

That's one of the things I love about it, how it increases the serendipity quotient in my life.

Other things I love: That it is teaching me brevity, how to be more concise, I, who am so in love with words, who easily earns my reputation as "Queen of the run on sentence (with parenthetic clauses)". But Twitter? 140 characters, baby, or you're toast.

Also, I am by nature an eavesdropper, and Twitter was MADE for that, I can listen in on other people's conversations all day to my heart's content, no one the wiser.

I would like to call myself the Queen of Twitter, but really I'm not. I go through phases, I'm in and out. Sometimes I just read and lurk a lot. Mostly that's fun (see above paragraph) but other days I'm feeling down, vulnerable. And then I feel all left out, wonder why no one is @ing me. (Duh, dorkus, you have to jump into the conversation and @ others to be included, REMEMBER?)

The real Queen of Twitter right now (in my humble opinion) is, quite fittingly, my friend Alexandra aka The Empress who tweets as @GDRPempress and writes the blog Good Day, Regular People. She was on of my two wonderful BlogHer11 roommates, and it would be hard to find a lovelier, more gracious woman on all the planet, let alone the interwebs.

Any delightful or vital conversation going on - there she is! She re-tweets like crazy, offers tweets of support and encouragement constantly. Her stream looks like this, all day long: 

Also Alexandra is first on the spot with important messages and alerts. (And yes, it was she who clued me in to Anna See's tragic loss of her son last week.)

So if you're looking to pick up ONE new follow on Twitter - make it Alexandra. (After ME, of course. Do follow me, please! @Squashedmom, of course.)

So yes, when it's not leading me to fritter away my time, I can truly say that Twitter has embiggened my life (is TOO a word, coined on the Simpsons).

So that, ladies and gentlemen, is why I'm (proud to be) a Twit.

(And you can Tweet me, and we can talk all about it, or anything else you want to, in 140 character bursts.)

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Tuesday, September 13, 2011

Imagining the unimaginable

On Friday I received a chilling set of Twitter messages from my friend Alexandra:
I went, I read, I left a message. Words, just words, but they were all I had. No one could do what we all wanted to: turn back time's hands and undo the undoing of this boy.

I cried and cried for a boy I didn't actually know, the son of a woman I had never met. But whose words I knew. A woman like me: a blogger, a mother.

The mother is Anna See, of the blog An Inch of Gray.

Her son is/was Jack.


Now, forever.

He was playing in his friend's yard. A back yard just a few houses away. Just a typical boy, at play. The creek had breached its banks. He tumbled in, was swept away.

And just like that, a light is snuffed out, a life is gone.


But not to me, the mother of an autistic son.

Tragedy is not distant, but in fact stalks me. It's the shadow that walks by my side always, the fear that because of his autism, because he understands the risks of the world so much less than a typical child of his nine years, my son Jacob will be lost.

Swept away.

That chasing a pigeon or ball bounced wrong he will run into the street...

That drawn to water, as so many autistic children are, he will step into a river too rapid, fall into a pool too deep...

That with his friendly, too trusting nature he would walk off with a seemingly kind stranger without a backward glance...

That, strong, willful boy that he is, he will loosen himself from my hand when we are in the ocean and be carried out to sea...

That, large boy that he is, he will walk up to an armed police officer, saying and doing something innocent but seemingly provocative when he is no longer a still cute 9 year-old but a six-foot-plus seeming adult teenager...

That, curious boy that he is, he will take one step too close to a raging, flood-swelled creek, and be swept away.

I know, I quake, that one short twist of fate could put me right into Anna's awful shoes.

So I weep for her, and for all the mothers who have lost their young.

And I hug my sons a little tighter, watch over them a little more hawk-like. Knowing it can never be enough. That the unforeseen moment of disaster can not, by its own nature, be seen, known, avoided.

But still, the instinct is there. The magical thinking: "I can keep my children safe."

But I live with these statistics: Autistic kids are often bolters, runners, escape artists. Approximately half of all autistic children wander, at least once. And the number one cause of death among autistic children that wander? Is drowning.

We like to think this cannot be us, our family. But it can be. In the blink of an eye, a moment's distraction; a step taken into exactly the wrong place at the wrong time.

Anna is an incredible woman, capable of tagging her memorial post for her son "thank you for loving us" as well as "heartbroken."

So go there, now, leave her family your love.

Write your own post for Anna, and link up here, where Kate of The Big Piece of Cake is gathering them all. (And read them.)

Our hearts pull toward Anna's. We offer words of solace knowing they can never fill the empty son-shaped space on this earth.

But they are what we have to offer her.

Our words of love.

Our prayers, from those who pray.

Our sisterhood, no less real because it is digital, ethereal.

As her son is no less real, now that he lives on in memory, in spirit, and on Anna's blog, smiling his incandescent smile.

Beautiful boy.

Forever 12.

(Anna, you and your family are in my heart, tonight and forever.)

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Sunday, September 11, 2011

The Other Twins

As everyone knows, ten years ago today, my city, my country, and the world changed irrevocably; all were diminished forever.

This is one of those touchstone moments, that everyone who was alive and old enough to be cognizant knows exactly where they were, who they were with, what they were doing at the exact moment that they heard the news of the planes hitting the Twin Towers, the towers falling.

Some didn't have to "hear the news" as they were close enough to see, hear, feel the event itself. My friend Peter was working in the towers, his life saved by a forward thinking manager who told his people to get out and go home, in spite of what the building management people were telling him.

I do not know a single New Yorker who did not know someone who lost someone that day, there being way less than six degree of separation here.

I myself, in spite of living in the city, was kept in a bubble, unaware of what had gone down for a good hour afterward. At exactly 8:45 AM, I had arrived for a breakfast date, and entering the Barking Dog Diner, greeted my friend who had taken a cozy dark booth on the inside -- there being two basic choices in seating: cave or greenhouse.

I say I was meeting a friend, but strangely enough, she was someone I was actually meeting for the first time. In 2001 I was just dipping my toes in the water of an online life, and that morning I was meeting my first internet friend IRL. We had connected at a fertility website, back when "interacting" online meant posting notes on a message board site and waiting hours (and sometimes days) for a reply.

My friend had just completed a successful IVF cycle at the same center where I was planning to undergo one, if my September IUI failed (it did - the twins are IVF). She was in town for her first ultrasound, and I was rushing to find out her news. She lived upstate, near Albany, but had traveled down to NYC to do her fertility treatment because of the sterling reputation of the center we were at (Weil-Cornell, for the curious).

Deeply nauseated, she had been worried it might be twins, was hoping she was carrying a singleton. When I arrived she was glowing, happy to have witnessed that miraculous thing: her (single) baby's heart-beat in grainy black and white on the ultrasound monitor.

Unaware of all that was going on in the world around us, cocooned in the glow of long awaited happiness finally unfurled, we talked and dreamed of our futures as mommies. I looked to her and hoped I was seeing shadows of my future.

Finally, it was time for us to leave; for her to head back to Penn Station and catch the Amtrak back North to her husband (who sadly could not come with her this day) and for me to head to work, conveniently right across from Penn station. We were going to catch a cab together.

While she made her way to the bathroom, I went up front to pay and was annoyed to find the cashier/hostess had abandoned her station, was furiously pacing and smoking (?!?) on the sidewalk outside. When I stepped out to find her, she was jumpy as a cat, apologized profusely and added tensely: "It's just I'm so upset by what's going on, I had to have a cig."

I must have stared at her blankly because her look softened. We spoke over each other; me: "What do you mean, what's going on?" and her: "Oh, honey, you don't know, do you?"

She then proceeded to tell me that two planes had hit the Twin Towers, and they were aflame. She pointed me southward to witness the plumes of smoke rising, ominously black in the brilliant blue sky.

Just then a cab stopped smack in the middle of the intersection of York Avenue and 77th Street. The driver rolled down his window and cried out to the world: "The towers are falling, the towers are falling!"

I paid our breakfast bill in a blur, came back to our booth to find my friend and break the news to her. It seemed surreal, impossible. Could that really have happened while we sat and ate breakfast so calmly, so unaware, in this selfsame city, just a few miles to the south?

We were both in a daze, needing to contact husbands and head west. I had it in my head to still go in to work, she thought there was a chance she could catch a train, desperately wanting to be heading out, home.

Miraculously while we were both calling and getting busy signal after busy signal, cell towers vastly overloaded, my cell phone rang. My husband had gotten through. He disabused us of the notion of heading toward Penn Station, told my friend they had already sealed off the city to rail traffic, told me I was in no circumstances going anywhere but home. And my friend, obviously was coming with me.

New, barely knowing each other outside the details of our ovulation cycles, we were abruptly bonded by strange circumstance. Sitting in our living room together, numbly watching events unfold on the TV, we barely spoke, just witnessed.

Luckily my friend had an aunt who resided in the city, and in my neighborhood no less. Contact was eventually made, my friend departed, and my husband and I found ourselves alone, together, un-moored except for each other.

Ahead lay days of nervous baby steps back out into the world; lay our trip to my niece's September 15th wedding in Maryland, making jokes along the way about traveling from one target zone to another; lay contemplating and then going through with our final, ultimately successful attempt to become pregnant, made ever more poignant in this, our post-9/11 world.

But that evening there was only us, walking slowly down Riverside Drive, hand in hand, gazing southwards at the haze of smoke hanging over the smoldering pits where just that morning buildings had stood.

They were not beautiful, those Twin Towers, products of 1970's minimalist uber-functional architecture; but they were ours, and somehow majestic in their dominance of the New York City Skyline.

Ten years is both a short and long time. The entirety of our sons' lives. But also the blink of an eye. Especially for the many who lost loved ones that day, whose time-dulled grief is made knife sharp again each year, as September 11th rolls around.

I cried that day for the shattering -- of lives, of innocence, of an easy sense of all being right with the world that can never return again.

I cried again this morning, remembering; and with the small sadness that my sons will never know that little uplift of the heart that came when flying back to New York from distant shores, of spotting the Twins, those beckoning towers, welcoming you, and knowing you are finally home.

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Saturday, September 10, 2011

Hopeful about my fledgling

I know it's Saturday, but there is no Special Needs Sibling Saturdays today. That's because it's the 10th of the month, so I'm over at

today, talking about my autistic son Jacob's experience at sleep-away camp. Actually, since he really hasn't told me anything about it, I'm talking more about MY process and experience in sending him there.

So come read me over at Hopeful Parents today as I contemplate my little Fledgling.

And if you're disappointed about not finding

today, maybe you missed some of the last few posts that came out in late summer when everyone was distracted, immersed in end of vacation and back to school madness.

Did you read all of these?:

When a Brother's Love Hurts

 by Gina of Special Happens

It’s Just Not Fair

 by Shell of Things I Can't Say

How Will They Know?

 by Caryn Haluska of Living with Logan

They are wonderful and should have more eyeballs. And you'll find SNSS back here again next Saturday with fresh tales of special needs siblings.

Thursday, September 8, 2011

U is for Uncharted Territory

U is for…

Uncharted Territory

What I feel I step out into every day, in my life lived here with my son Jacob, on our own particular wavelength of the Autism Spectrum.

Because he is like other ASD kids in this or that aspect, but his particular constellation of neurobiology is completely unique. A supernova unto himself. 

I have a friend (who himself is on the spectrum w/ NVLD) who says of his SN son: He has a 100% diagnosis of being {NAME}. Of that we are certain.

Sometimes when I tell people I have a "high-ish functioning" kid on the autism spectrum they say, "Oh, Aspergers" and I have to laugh. Because, truth to tell, he is the anti-Aspergers, language processing being his primary deficit.

A little professor he most certainly is not.

When I tell another autism mom he loves baseball she nods and talks of how obsessed with the stats her aspie son is, and I have to laugh. Jake wouldn't know a stat if it bit him in the ass. And his knowledge of the basic rules is sketchy at best (let alone the thousand arcane ones that the baseball obsessed usually revel in being privy to).

No, Jake loves baseball for the... well, I actually have no idea exactly why, other than that his (wonderful) school took the kids to a minor league game on a field trip this July, and somehow he fell in love with the boys of summer that day.

I think perhaps he loves the drama of it all. He likes to shout out: "You're out!" and "He's pitching the ball, Mom!" or "He's hitting the ball, Mom!" excitedly while watching a game on TV. And Jake is over the moon that our family is going to a Mets game soon (his idea).

My little corner of the neurodiverse universe.

And, in another corner of it, today is Ethan's first day of school. 4th grade, a big year. He's anxious (it took him FOREVER to fall asleep last night).

4th grade is his uncharted territory: new teacher, new kids (and none of his close friends in his class), academics ramping up, ADD acting up (anxiety always triggers it).

And, most importantly, standardized tests that count, REALLY count, as in NYC they pretty much determine what middle school he'll get into. And he knows it (the kids talk). And he feels the pressure, and wishes he could go back to simpler times.

Nine years old, and already nostalgic, declaring, "My friend Peter is so lucky he's in 2nd grade, they don't have any big tests yet. 2nd grade was a great year." and sighing.

It was not easy for me to get this post out today, having just rounded the bend from those last lingering weeks of summer vacation, the unstructured days starting out glorious and degenerating into bored, fighting children and exhausted parents barely parenting. There be dragons here.

I almost called this post "U is for Unfinished" and made it a one sentence post:

U is for Unfinishe….

But couldn’t bring myself to do that (even though I gave myself a nice little chuckle at the conceptual humor involved in that stunt) because, well, when have I EVER been short form, really?

So I started to search for other U words, and realized so many of them were "Un-" words. How appropriate, as my life feels like it's full of a lot of Un-s right now.

Some days I feel:






My real self just buried so far:


That the pressures so thoroughly:



Unrelieved, nearly


But I am also:

Unrelenting in my search to find new ways to help and support Jacob

Uncompromising in my insistence that the bar be set high for him

Unbending in my belief in him, that no one should ever, ever

Underestimate his intelligence or

Understanding of what is going on around him.

And my life is also, always:

Unbelievably fulfilling

Unimaginably beautiful, and full of love, here, in the

Uncharted territory I sail off into every day.

And? It's a good thing I like dragons.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And maybe I should have just written about Ukuleles.

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