If it's not one thing, it's a flat tire and 103 fever

This is going to be a fairly short one, if not a particularly sweet one...

When I went to pick Ethan up from camp on Friday morning, I was so happy. It was a beautiful day and I'd had the wonderful company of my friend Deb on the 2 hour drive hour out, as I was giving her boys a ride home, too. We have a lot in common, had a lot to talk about, and the drive-time just flew by.

I arrived to find Ethan looking tired and miserable, sitting on his duffel bag. I was expecting a happy-dance reunion, and I got a nine-mile stare instead. A mumble and a tearful hug.

I was more than a little miffed to find out that the message I had specifically asked to be delivered to him, that I would be doing the LATE pick-up time, as I wanted to take the camp tour, and thus to NOT worry that he was one of the last campers being picked up? Had NOT been communicated to him at all.

I assumed that an hour of anxiety was the source of his listlessness and clinginess, his resistance to going on the walking tour of the camp. That and the fact that he had slept poorly the night before. As he reported to me, he had woken up in the wee hours to pee, and had had trouble falling back asleep.

I really should know better. When Ethan is THAT out of sorts, something is up. My friend Amy even wrote a blog post about this phenomenon recently (called: those who cannot remember strep throat are doomed to repeat it) that I had read, and actually shaken my head thinking *I* certainly knew better. The more fool, I.

Because it wasn't until after the tour (which I dragged him on) and after lunch in town (which he only ate half of) while in the local penny candy store (that he was being surprisingly less than enthusiastic about) that I heard him complain of feeling cold. And it was actually rather warm in this store.

That's when the bells and whistles FINALLY went off in my head and I put my hand on the back of his neck... to find it burning up.

Feverish Ethan, with friends

A short trip to the local drug store for a thermometer revealed a temperature of nearly 103.

Yikes! No wonder he'd been feeling so punk. I had also picked up some tylenol (pretty sure he would need it) so boy properly dosed, we cut short our poke-about town walk and got into the car to head home.

The medicine kicked in and the ride home was going swimmingly. That is until a large chunk of debris - it looked like a piece of bumper, maybe - flew off a car diagonally in front of us and landed in the road: hard plastic, light blue and deadly to our right rear tire.

After the bump of rolling over it, I felt the sickeningly familiar chunkity-chunkity-chunk and pulled over fast, on a section of I-80 that fortunately had a decently wide breakdown lane. The boys were all thrilled, they had never been in a car that had sprouted a flat tire, let alone one on a major highway - quel excitement!

After some time on the phone with AAA and being told we'd have a long wait for a tow truck to come to our aid, we were pleasantly surprised by fast efficient service.

Of course the spare was in a well in the trunk, which had to be emptied of camp duffels, and of course it was completely flat. But I had warned the operator of this probability and the truck driver actually had a tank of air with him, and the spare, once inflated, thankfully, held.

I was nervous as a cat the whole long, long final hour of our ride home; every bump or slight shimmy making me fear my cranky old spare had given up the ghost. But it held true and got us back home to the city with narry but a good tale for the boys to tell their friends.

I might have kissed the sidewalk in relief when we finally stepped out of the car, home safe, but I know how many dogs have peed there. So I settled for a friendly pat of the old girl's roof, telling her "Good car, good car."

And I thanked the parking fairies for delivering us a spot nearly right in front of our house. Not quite rock-star, but proof they weren't pissed at us, either.

Hopefully Jake's return home tomorrow will involve less highway adventure, and no need for thermometers.

Last year's fledgling, this year's eagle

My two empty nest days are over.

Tomorrow I am up early once again, driving out to Pennsylvania to pick Ethan up from camp.

So, with no time to write, and also Jacob much on my mind, as he spends his week at special needs sleep-away camp for the SECOND year in a row, I thought I would re-post my report from his first year there.

Last year I called him a "fledgling" as he was leaving the nest for the very first time. This year he has shown himself to be a veritable eagle, soaring high on his own wings, so easily.

Here is that post (written for the Hopeful Parents site) from last summer:

Jake & me at camp welcoming ceremony 2011

Fledgling

This summer, an amazing thing happened in our lives: our 9 year-old autistic son Jacob went to (ASD) sleep-away camp for a whole week in late August. And we didn't get that dreaded phone call to come get him because he was falling apart, unable to hack it. He had a great time.

This is the child who clung to me and sobbed when I left him at pre-school...

Who had to have a photo of me taped up in his cubby at Kindergarten, so the teachers could bring him over and point to it when he got sad and called out for me, reminding him that he would be going home to me on the bus in just a few scant hours...

The boy who every time we are out and about in the world doing anything, even something he truly loves, will ask, after a few hours, to go home please, telling me that he misses Coco (the cat) and his blue bear.

So knowing all this, why did we dare send him in the first place?

Well, we did it for him and we did it for us. For him because he is too dependent about things he actually has the ability to be independent with, but not the inclination; thinking that a week without us would kick-start some self-reliance, push him to take more responsibility for himself, where others are having expectations for him with the bar held high.

We also wanted him to have the confidence that comes with knowing he could spend a week apart from us and survive, and maybe even thrive.  We were hoping he would make friends, would try new things, that the experience would open up his life.

And also? I was terrified. Because while Jake may live in the body of a rather large nine year-old, emotionally and socially he is a LOT more like a four year-old. And you don't send four year-olds off to camp alone.

Also, the camp was a pilot program, being run out of a regular (Jewish) camp, at the end of their regular season. So this was an experiment on all sides. It was set up for "high functioning kids on the autism spectrum" ages 9 to 13, and I was afraid that Jake would have less language and be youngest both physically and emotionally.

We were teetering on the fence about this for a long time: was this the right thing to do, or should we wait another summer.  But I didn't want to underestimate my son, and I wanted to give him this opportunity to grow.

So, with trepidation, a few Sundays ago I loaded up the car with Jacob and a giant black duffle trunk containing a huge portion of his worldly belongings, a full set of medicine & vitamin packs and a detailed description of his GF/CF diet.

We had written social stories aplenty, made a special calendar that he could check off each day until it was the next Sunday and he was to come home. Blue bear came with, and he held him the whole ride up.

It was just Jake and I traveling North to the Berkshires together because his twin brother Ethan was traveling West to another state this same Sunday with their Dad, on his way to an introductory week of sleep-away camp, himself, along with a bunch of his friends. (Remember when I said this was for US, too?)

The whole ride up I chatted away to an unusually quiet Jake in the back seat, talking about camp and how today was Sunday and I was going to leave him there and come back the NEXT Sunday and pick him up. It was impossible to know how much was sinking in or not.

We arrived to be warmly greeted by a lovely staff. There were around a dozen kids in the program, and surprisingly about half were girls. There was a family welcoming ceremony with songs and prayers and introductions.

You know you're at Autism Spectrum camp when someone steps up to introduce themselves to a group and says "Hi, I'm Dan" and a voice from the peanut gallery calls out: "You're short!" (He was.)

Toward the end of the ceremony, Jake turned to me and asked, calmly, "Are you going now, Mom?" So I guess he understood, after all. I told him I was not leaving quite yet, that all the mommies and daddies would be kissing their kids goodbye at once and then he would go off with his counselors to settle into his bunk and begin the fun.

And when the time came, that's exactly what happened. A big kiss and hug, a wave, and goodbye, Jake. Wow. Someone had tears in their eyes, and it wasn't the boy.

I got a call the next day, and nearly had a heart attack because I got to my phone just as it rolled into voicemail. But it turned out to be a courtesy call, wanting to reassure us that all was fine, share that Jake had settled in well and was happily having fun.

Like all modern camps these days, photos posted daily to their website and we were able to see our boy swimming, dancing, sculpting, playing games, playing drums. Sometimes smiling and laughing sometimes looking a little lost inside himself, but never scowling, unhappy.

How strange it felt to not have him home, how many extra hours I had in my day to get things done, how unstructured my evenings became -- which was both exhilarating and vaguely un-mooring; that's another story for another day.

And then, when it was time to pick him up, he ran to Ethan and I beaming, happy to see us, but turning and waving goodbye to his new friends, too. A happy, tired boy, my little fledgling, one step closer to becoming the young man he will someday be.

NOTE: This post originally appeared on the group Hopeful Parents site on September 10th, 2011. Click HERE to read the original there.

Full Circles

"Tree of Life"

It's four am and I should be asleep.

I have a long day of driving ahead of me, up to the Berkshires in Western Massachusetts and then back home again.

I am taking Jacob up to camp.

It's the same special needs program at the sweet, wonderful Jewish sleep-away camp he went to and loved last year.

But still, sleep is not coming.

On top of everything else that is making me anxious these days, there is this:

Even though he went last year, even though he is a year older and his communication skills have jumped leaps and bounds over where he was a year ago?

My son Jacob is still quite autistic; still unable to reliably report on his activities; still as likely to answer "yes" to any and all questions asked of him, because he knows that answer makes us questioners happy, as opposed to trying to represent some sort of truth.

"Did you do math is in school today, Jake?"

"Yes!"

"Did you play basketball today?"

"Yes!" 

"Did you go to the moon today, Jake?"

"Yes!" 

(So my son is still an astronaut.)

And also, though he can say "I want..." this or that, will tell you "No, I don't like that!" if he hates something you've given him to eat or wear... still, he doesn't really know how to thoroughly advocate for himself yet.

I worry.

And I'm struck once again by how different my feelings were two nights ago, preparing to send his twin brother Ethan off to HIS one week sleep-away camp; the excitement, the certainty that he would be having a good time, easily able to let the folks there know what he needs, to take care of himself.

Twins. But so different.

<> = <> = <>

On road, in the early morning of what is sure to be a beautiful day, Jake is in the back seat and we are listening to pop music on the radio.

Driving up to New England, the highway passes through the Riverdale area of The Bronx; means I pass right by the exit I took to go see and take care of my parents for two years, in this, their old car, now mine. Today the exit sign for 254th street brings my heart into my throat, tears burning my eyes.

My mother so diminished and frail now, hurting and in the hospital. I am contrasting that with visions of my parents when they first moved here, back from Florida together, the two of them. So much younger, so full of life in 2005.

Seven years.

And he is now gone and she is in the endgame. And my children are now ten, double digits; on the precipice of launching into teendom. Life flowing in two directions all around me.

<> = <> = <>

It has indeed turned out to be a beautiful day, the finest of this whole hot miserable summer. I am sitting on a bench in the outdoor sanctuary at Jacob's camp. In the place where, as 14 year old, I had lain a mosaic; now long gone, replaced by a lovely tree of life ark.

This camp has changed over years since 1974, yet also so much remains the same. Walking past the old red barn, chills ran down my spine, memories shuffling past. Last year the special needs camp was held at this camp's sister location nearby. But this year: here.

Last year the opening ceremony was lovely, but did not evoke the past.

This year I sit in this exact same spot as my fourteen year-old self, and past and present swirled together like the light and dark sections of a mixed pumpernickel bread. As we sing the the words of the prayers, my arm around Jacob who is leaning deep, snuggled into my side, I am crying.

Growing up in non-religious household, going away to this camp at fourteen was the first time I was really exposed to Hebrew and prayer. That one summer, four and a half weeks, really, have remained a deep & meaningful time, are a part of shaping who I am.

Not particularly observant now, there is still, somewhere in my core, a rooted sense of Jewish self, an unshakable identity. And I know my one month here at Jewish sleep-away camp instilled that.

People have asked me why my near fervently non-religious parents had sent me here, of all places. And there was the official, and I'm sure true reason: I had always wanted to go away to camp, they wanted to give me what I wanted before it was too late, and this was the cheapest camp they could find.

But I also have to think that they somehow knew, maybe even subconsciously, that I needed this, needed to belong to something larger than just myself and my tiny nuclear family.  

And now I sit, my son at my side, my mother in a hospital bed, physically distant but ever on my mind. And in front of me, in this sanctuary, is a beautiful, sculptural Tree of Life.

A visceral image of what I sit in the middle of every day, these days, caring for the young and the old. Looking backwards and forwards.

But today, trying to be just here. In and of this moment.

And then my son hops up, heeds the call for campers to make their departure. He plants one more kiss on my chin, runs up the hill to the awaiting counselors. Just when I think he's off with nary a glance back, he turns, offers me a big smile and wave and happy "Goodbye, Mom!" shouted at the top of his lungs.

And he's gone.

Jake waving goodbye

I am linking this up with my friend Heather's Just Write

Hodge-podge Edition

Five things I want to tell you (updates and downloads of momentary thoughts from my currently chaotic brain) in no particular order. Kind of like what you'll get if you open up one of my kitchen drawers (don't ask):

1. Ethan has been dropped off at camp.

Ethan, excited at camp drop-off

Five whole days apart. I am missing him. And yet? Wow, is the house quieter and more peaceful.

Every now and then something happens and I realize yet again that my son who doesn't have autism is actually higher maintenance and more exhausting to parent much of the time. Go figure.

2. And Jacob? About to do the same with him on Tuesday, a return to the wonderful ASD Jewish camp program he went to last summer. The one I had to drive like a bat out of hell up to last summer, a full day early, to pick him up and then race Hurricane Irene back down to New York.

Please let this year be a repeat of the wonderful time he had last year, but can we just skip the hurricane emergency and accompanying parental anxiety? Thanks in advance, gods of Autism. And extreme weather.

3. My mother is doing... better. I have heard that the swelling around her eye has gone down considerably. It was so hard to not be with her yesterday, but I had to take Ethan across 2 states to camp, and then come back, and I just didn't have it in me to then travel an hour each way in an opposite direction. (Many thanks to Suzanne who lives one town over, and came to visit my mom in my absence. True friend.)

I will spend today with her. Hopefully she can go home. Even if that "home" is no longer a true home (sob), but just her nursing home bed, it's better than a hospital one.

Mom is constantly anxious about her glasses, which I will be bringing with me today when I see her. But she forgets. This is the tragedy of my mother's cognitive impairment. In the moment she is so with it: bright and connected and funny and kind. But her short-term memory, her ability to make things told to her stick? Is just... GONE.

And so she is constantly anxious and worried and upset about mysteries that have no need to be mysteries if she could just remember. But she can't.

I HAVE her glasses. They have been fixed. I will bring them to her today. She has been given this information at least twenty times in the last two days. But I am positive she will wake up this morning not knowing where her glasses are, and worrying that they are completely broken and she will never get them back.

Number 342 of the things that are breaking my heart.

4. I am having a really hard time right now with all that's going on (and I'm not even telling the half of it). Anxious. I do not feel anxiety often. Which is a good thing because I tolerate it REALLY poorly. I am jumpy, twitchy and more distracted than usual. My ADD goes into hyper-drive. And I get really cranky. And negative.

And I write things like this:

When you've been spending time with your sad, injured mother, you tend to think ungenerous thoughts about strangers as you walk around streets of New York, like: "How come YOU get to stroll down Broadway chatting with someone who is clearly your sister, with your twin, odd, ungainly gaits while my Mother has to lie in a hospital bed with a baseball sized purple goose egg swelling her eye shut?" 

The brain screams NotFairNotFairNotFair as I and everyone else just walk about on our daily routines, oblivious to the manifold disasters that lurk around each bend. Every able-minded and -bodied person is just one misplaced step away from becoming a member of the underclass injured, the invisibles who shuffle or wheel among us oblivious, lucky folks.

See? I am just SO much fun right now. (Yes, it IS appropriate to start feeling sympathy for my husband right about now.)

5. Squirrel! ... Shiny! ... Was I going to say something else i was going to tell you? Never mind. I'll remember later. You don't mind a call around midnight, right? Or better yet - something to post about tomorrow.

Week in Review (with pictures!)

I'm still pinned to the wall, a bug squashed against the windshield of life.  And yet I want to check in here, to let you know...

Some things this week went right:

Ethan & friend preparing to launch on camping trip

Ethan had a great 3-day overnight camping trip with his day-camp. He's been watching the older kids do this for years, and now he finally IS them. Perfect weather. Good friends. Kid food galore. And he came home only slightly sunburnt. Total win.

Jake asked for and got a haircut Friday, and is very happily telling everyone about it.

Before the cut

Haircut! (Handsome boy)

I had a lovely, long visit with my mother Thursday. I gave her a manicure, a lenghty process as I have to do one hand at a time and let it totally dry before doing the other one.

This is because she has a need to blow her nose. A LOT (she has a two tissue box a day habit). And so if I do both hands at once, one gets ruined in the nose blowing/wiping process. She just can't help herself.

Mom, showing off manicure

I went to dinner with her, which was a good thing as I found out that in spite of my talking to the nutritionist at intake, she was getting food she really dislikes. No wonder she isn't eating enough and is losing weight.

I looked at the tough hunk of "pork loin" on her plate and asked why she had chosen this for dinner, as I knew it was not going to end up crossing her lips. "I don't choose, they just bring me food." was her reply.

"Mom, you fill out a menu choice form." I remind her. "No," she says "I don't. They just bring me food. I don't like a lot of it."

So those menu things they bring each week that she's supposed to be circling her choices on? She was just adding them to the pile of papers on her dresser. Had no idea what they were for.

It seems no matter how many times you tell people your mother has cognitive and memory issues, because she is so bright and with-it in the moment, they treat her like she is capable of a level of self-management and decision making that she really just isn't.

You can't just hand her a menu and tell her to turn it in later. You have to sit with her and ask her questions. Fill it out for her. Really. 

I had a long, possibly LOUD talk with the head of dining and now *I* will get the weekly menus to make choices for her.

After dinner (a nice piece of fish was hastily procured for her, and she ate a good half of it!) I took her outside into one of the courtyards. It had been too hot early in the afternoon when I had arrived, but by six thirty was delightful.

Mom loves flowers so. It lifted her spirits immeasurably to sit in a garden, even a somewhat scraggly one. And it was the perfect place for me to give her a good shoulder / neck / back massage (as I try to do every time I visit).

I left her in her room, digging in to the new puzzle book I'd brought. She had been awake, alert and lively for the entire visit. A vast improvement over past weeks, and even just this past Tuesday. Step by step. Bit by bit, coming back to life.

And then I was on to see my aunt, uncle and cousins, not even a mile from Mom. We sat in the yard and drank in each others company and cocktails (virgin for me, drive home ahead).

Flower in my aunt & uncle's garden

How much I love my family can not be measured. How they are circling round the wagons, all come in to care for and spend Eva's last significant days with her, so beautiful to see.

Greta, 14, borrowed my iPhone to take "selfies"

And Eva herself had a bit of a rally. Was asking for food. Small bits, but still, strawberry ice cream, blueberries, tiny bites of all sorts of treats were being gobbled up.

I left late, after dinner and many laughs and hugs.

Passed yet another major accident on the highway. Grateful, again, that it wasn't me. Grateful for so much, as I wearily made my way home.

Goodnight Irene

Photo source: NASA Goddard Photo

I figure having shared my neurotic fixation on the coming hurricane with you (you’re welcome) I have to write about the actual event, right?

Well, here in my neighborhood, New York City's Upper West Side (UWS)? A nearly non-event.

We live on high ground with solid bedrock underneath, in a brick apartment building built nearly 100 years ago when things were made to last, well, centuries. We’re on a single digit floor, high enough to look at thrashing tree tops, but well below the strong shearing winds. Safe.

The drive to pick up Jake from camp and bring him back to NYC was a bit hairy, with bands of drenching rain coming out of nowhere and then disappearing completely. But it was mostly the tension of having to make it back before the bridges and tunnels closed (most never did) combined with everyone's anxiety, as well as my own, that made it intense.

Really, I've driven through worse thunderstorms. Two so far this summer, in fact.

And while I had called and e-mailed like the crazy woman I was on Thursday campaigning to get Jake's camp to close a day early (it did), I was sad to have to miss the closing ceremony planned for Sunday, which was to have been a lovely family event.

I had been hoping to connect with other local autism families and possibly even make connections with the parents of kids Jake had been particularly drawn to during his week, ever seeking to help him have a true friendship spark.

Also? I love any chance to hang out with special needs / autism parents. We're a big-hearted, tempered-tough breed, usually with a good sense of gallows humor (at least the folks I like to hang with have one).

And I missed that. It was more of a "grab your kid and run before the storm" situation. Packing had clearly been done in a hurry. And since 3 of the 12 kids at camp were named Jacob? Yeah, we have some other kids' T-shirts and I'm sure they've got some of my guy's stuff.

I still haven't completely inventoried what has gone missing yet. But the most important thing - the irreplaceable blue bear? Safe and sound with us.

Others have not been so lucky. My heart goes out to them

I have spoken with friends in the suburbs and the country without power, those whose children were deeply frightened by crashing trees and rising waters.

A blogger you may know - Kelcey of the Mama Bird Diaries - has been flooded out of her home, and for God knows how long. She has young children, it's going to be rough, so go show her some support, here. (And, amazingly, she's kept her sense of humor intact.)

Vermont is in bad shape, having never dreamed, landlocked and deeply northern, that a tropical storm could impact, devastate them so.

Here there are a few trees down, but the sun was shining today and all the world seemed back to business as usual. We were out and about, too. The boys and I treated ourselves to Shake Shack for dinner tonight, and the joint was hopping.

I was pissy about folks complaining, whining about the "big deal about nothing" and feeling that the city shouldn't have shut down.

"I'd rather be over-prepared than under-prepared, wouldn't you?" I asked them, reminding them that there were people who lost lives, places where it wasn't "nothing" at all. (Yeah, I was a bit of a bitch today.)

And now we're back to trying to find ways to fill these last days of summer before back-to-school-ness takes over our lives. We will be getting busy, soon.

There are still mountains of musty smelling camp laundry to be done, bags to be unpacked from all our journeys (including my BlogHer swag bag - what the hell is IN there, anyway?) And summer's curls to be shorn, and school supplies to be hunted and gathered.

We are moving on.

Goodnight, Irene, now fizzling out over the deep blue Northern sea.

Your winds whipped down our street, you rains lashed our windows; and soon you will be a story we tell... where and how we danced with Irene.


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Beside Myself

I am not someone who feels anxiety easily; or often.

That's the good news.

The bad news is that my tolerance for anxiety? Very low.

So on those rare occasions when I DO feel anxious?

I'm a nut. A total blithering mess. Fruit loops.

If I talked to you, or left you a voice message, or sent you an e-mail today, you completely know what I'm talking about.

Yes, today was one such day.

And what has me so cranked up to 11?

The boys are both away at summer camp for the first time this week, so as I'd mentioned, I'm a bit off balance from that.

But what has completely unhinged me is the hurricane thing. Irene. Headed for my fair city of New York as we speak.

And then? Up through New England, like where Jacob is at camp right now, and where I was supposed to have picked him up at about 2 pm on Sunday, which is currently right about the time Irene is predicted to make landfall in the New York area.

So, um, yeah. something's gotta change.

And I leave at 7 AM tomorrow morning to pick up Ethan at HIS camp in Pennsylvania.

We had all sorts of plans and rendezvous with friends planned, and now it's all gone to hell in a handbasket and I'm scrambling to figure out when and how I will be scooping my Jacob boy up and running him back home...

I was going to say "to safety" but really? I'm bringing him home into a category one or two hurricane.

But we live on high ground in a brick building, so I assume we're OK.  And we don't really need to take public transportation anywhere, being in walking distance of so pretty much everything.

And Ethan would love to live on breakfast cereal and cookies and crackers and other such "non-perishable food items" for three days, so that's all good.

But I had things I was supposed to DO today -- enjoy my last day of "empty nest"... clean up my apartment... do laundry... finish my TWO post BlogHer11 posts including my "Secret Style Session" re-cap which is DUE today at the latest.

But all I can do is watch the hurricane updates on TV and my computer, and send nutty emails to Jake's camp director, and call everyone to set up contingency plans and find places to sleep along the route, and mostly spend all my time running "if this, then that, but if this other thing, then that other thing" scenarios through my head.

You ever see a dog who has decided to try to catch his tail and will. not. stop. until he has it in his teeth, spinning faster, ever faster in circles on the rug, as that thing he MUST catch just keeps jumping out of his reach?

Me, today.

My brain on anxiety: not a pretty picture.

I believe the term "hot mess" was coined for such a state.

So ladies of Mom's Fashion File and all your wonderful sponsors, please forgive me for not getting my post in on time. I will try to finish it from the road on Friday, but may be too busy jumping out of my skin while watching CNN. (In the meantime, readers, go read my friend Cheryl's WONDERFUL account of the event here on BlogHer)

OK, time to catch a few hours of shut-eye before I head off to my doom pick up my sons from camp.

I feel sad that I have to pick Jake up early, that he won't get his full week away, but safety first my friends. Safety first.

My tail! I think I've finally got... oh, damn, there it goes again....


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(Hurricane graphic courtesy of US Government NOAA)

Five days of empty nest

At camp welcoming ceremony with Jake

Well, the boys are both at camp and we haven't gotten a phone call to come scoop them up yet, so I've got my fingers crossed that nobody gets injured and the phone call never comes, and this experiment will turn out to have been a whopping success.

I'm still stunned, and reeling. Delighted by the freedom and missing them fierce, all at the same time.

I got home yesterday at about 6 pm, after driving Jake up to camp in the Berkshires on Sunday and then staying overnight up there with friends, not wanting to do the round trip all in one day.

I was supposed to leave in the morning, but I was having so much fun being a grown-up, socializing as me and not as "mom," I stayed through lunch. It was the most vacation-like 24 hours I'd had all summer, and it was glorious.

Last night my husband had plans to go out to dinner with friends and I spontaneously called up a dear friend and had dinner with her, myself. Did you catch that word "spontaneously"? Been missing from my vocabulary for, well, nine years now.

Walking out the door yesterday evening without making plans for children, hiring a sitter, calculating how long to stay out (the "is the extra hour of fun worth the extra hour of sitter" quotient)? Glorious. And strange.

Strolling with my husband down Riverside Drive on our way to our respective dinners, I was positively giddy.

But today, I've felt a little un-moored all day. "Mom" is so at the core of my identity, I don't know who I am if I'm not caring for or planning for the care of little ones.

Even when I was across the country at BlogHer, I was still calling, getting texts, still the one "in charge" of arrangements, even if the execution of them was in other hands.  I had even gotten a 3:30 AM call from my husband one morning, California time, needing to know where to find the boys' lunch boxes. (Scared the bejeesus out of my roomies, too.)

But this? This is hand them over and then pick them up. Totally out of my hands. Totally unprecedented.

But the instincts, they don't just go away, even when the brain says "stop."

Tonight at about 6 pm, at the time when even if the boys had been out and about all day they would surely be home and needing to be fed, I was jumpy. I just couldn't shake the feeling that I needed to be doing SOMETHING for SOMEONE. Nope.

I am going to try my hardest to enjoy my last 2 days of freedom. I have a lot to do, busy, busy days planned, but I will be sleeping in Wednesday and Thursday. 6 AM wake-ups, 7 days a week for years on end has been brutal.

And I'm going to try to quench the little back-of the-mind voices that are worrying about my boys. Especially Jake who seemed so barely ready for this, about whom I went back and forth, and back and forth before deciding to go through with it.

It's so hard with him, to know how much he actually understands about what is going on around him. I have often both under- AND over- estimated his comprehension of situations.

I'd been doing my best to prepare him: writing social stories, reading Arthur Goes to Camp together. The whole ride up I talked about how long a week was, reminded him I'd be leaving him but would definitely, no matter what, be back to pick him up the next Sunday.

We had arrived at camp just in time for the opening ceremony, and as we sat together through the songs and heartfelt, cheery welcomes, Jake turned to me every few minutes and asked "Are you leaving now, Mom?" So, yeah, I guess that part had sunk in.

You know you're at ASD camp when someone stands in front of the group to introduce himself "Hi, I'm Dan..." and a voice from the peanut gallery pipes up "You're short!" Luckily Dan had a sense of humor and we all laughed.

You also know you're at a special needs camp when there are large kids screaming and crying and carrying on about separating from their parents. My heart went out to those kids and moms while I secretly thanked every supreme being I'd ever heard of that it wasn't MY kid.

Jake was amazing, giving me a warm hug and kiss and saying goodbye... and then going off with the group, like he did that every day. He never ceases to surprise me.

Ethan was nervous about fitting in, but as he's at camp with three good friends, I'm sure he's having a great time. And even if he's miserable, it's only five days, right?

On Friday morning I leave early (6 AM wake-up again. SIGH.) to go fetch Ethan. And he'll have a day with me, Jacob-free, which should please him immensely. And then Sunday we drive up to get Jake, and then it's full-time family time once again. For the two more weeks until school begins.

The moment I see their faces once again, I know how much I've missed them will come flooding over me, and I'll try not to embarrass them too much with my tears and kisses.

Within hours of their being home, I know these five child-free days will seem like a fever dream, a distant memory... like lazy Sunday mornings, or having a waist.

But for now I'm going to try to lay the strangeness and anxieties aside, and milk this time dry. Go to the movies - spontaneously! Eat something Ethan loves - and NOT have to share it with him. Shout something to my husband from one room to the next in the late evening and not worry about waking a sleeping child. Sleep naked. Step out at midnight, just to look at the moon and the stars.

Glorious.



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What He Needs

Today was the last official day of public school here in NYC. Ridiculously late by any standards.

Ethan was already gone, his camp having started yesterday. I gave him a free pass to miss the final day and a half of what is essentially babysitting, because, as he put it: "Everybody makes friends the first day at camp, Mom, I don't want to miss that." Socially astute, this son of mine.

So today I was at his school even though he wasn't. I dropped Ethan off at camp then u-turned and headed back down, passed my street and kept going. Rebounding many blocks in the opposite direction to take care of some final paperwork and say some goodbye-for-summers.

New York City is a landscape of micro-neighborhoods, and so I was also saying goodbye to this comfortable one around Ethan's school. It's close enough to home and filled with useful stores and services, so that we will probably be by there at times this summer; but it will no longer be part of my daily mind-space.

I therefore have my summer & school-year routines, each different, each looked forward to and/or missed when in the opposite mode.

Ethan's camp is in the same uptown neighborhood as his preschool had been, so there is a lovely quality of familiarity and return each summer. I catch nostalgic glimpses of 3 and 4 year old Ethan around every bend.

Sweet memories wafting up, helping to ease the pain of Ethan's new-found "Just leave me at the entrance and don't let the gate hit your ass too hard on the way out, Mom." attitude he has suddenly adopted at drop-off this summer.

Where once there was clinging & kisses, there is now quick dismissal. I knew this was coming, was even looking forward to it in some ways, but it's hard to reconcile with the boy who still climbs into my lap each evening at bedtime, fiercely demanding his talk & cuddle time.

Outside Ethan's school this morning, I ran into my friend Sandra. She is all excited about (and exhausted preparing for) a big European vacation she has coming up.

Alone with her husband.

Unfathomable to me.

Though we have kids the same age, she is more than ten years younger than me. Her daughters will be having a blast at their Grandparents home, her parents being more than 20 years younger than mine, making all this possible.

But I also realize that it's not all of the unfathom. Even were we all so much younger, even had we the financial resources to pull such a trip off, it would not be on the table for us, just not in the cards.

Jacob needs me just too damn much.

He could not tolerate that large a block of separation. And frankly, truth be told, neither could I.

It feels like another life, the one in which I traveled for work and pleasure, hopped on and off of planes, packed with precision and ease for days, weeks, or months, and just set off.

It WAS another life, and I was another me.

A not-mother me. A not-yet-autism-mom me, for certain.
 
This summer we are looking into the possibility of sending Jacob to a special needs sleepaway camp for one week. It will be in a town near where my in-laws have their vacation home. A place comfortable & familiar to Jake.

I / we could really use the break. And yet I'm filled with trepidation.

We have never been separated for this long before. One night twice, two nights once. That's pretty much all.

I am his ambassador to the world, his interpreter. I know his thoughts, needs, moods like none other. I am what he wants, needs; always.

And yet... and yet... he is nearly 9. He does go to school every day and they seem to have figured him out just fine. He is getting older, and he needs to grow more independent, not just stranger.

Jacob is awesome these days. He is expanding his repertoire, telling stories, constantly, that begin with "Once upon a time..."

And even though they are all variations on a few basic themes? They are VARIATIONS, not rote repetitions. Yes, he is making things up, combining elements in novel ways, inventing characters. AWESOME!

But the talking all the time is getting exhausting. His week off school (that comes to an end TOMORROW, YES!) has been quite a challenge for me.

(Yes, I've seen every kids movie out now. Cars 2? Twice.)

And his full month off, after summer school ends, will likely be likewise challenging. This camp could really be a godsend. For all of us.

We are probably going to try it, if they'll have him (application is in and we are awaiting) and if we can scrounge up the cash to cover it.

But still, I am afraid. I fear he will be too sad, too lonely, too alone without anyone who understands what he is thinking/feeling/needing.

And I know, even though I desperately need the break, I will spend much of our time apart thinking about him, worrying about him, wondering how he is doing.

The camp number on speed-dial, my fingers hovering, constantly, inches from the phone.

He needs me.



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Half-Time

Yesterday was Jake's last day of school.

A half-day.

After a week of "half" days.

Really?

"Half?"

Because they feel more like a quarter to me.

Like the school bus picks him up, takes him to school, circles 'round the block a couple-a-three times, then picks him back up from school and deposits him into my hands.

And if I'm lucky?

I've had a chance to shower.

Or have just arrived back barely-on-time, breathless from some end-of-the-year-drama-class-play-last-publishing-party at Ethan's school.

Ethan and the other Tasmanian Devil

Or have been at Jake's Award Ceremony / Moving-Up celebratory lunch at his school.

Jake is a "Math Wizard"

Or have gotten my mother to the doctor and back in time to meet Jake's bus.

Or have gotten the teacher and therapist cards & gifts purchased and/or re-purchased.

(Um, I *might* have shot myself in the foot by picking up the B&N gift cards early in the spring, thinking I was being all efficient and not last-minutey. But I had forgotten the early-purchase-misplacement factor. And then I could not find them to save my life and had to buy new ones. Or maybe I didn't.)

(Honey, if you are reading this? We can use them in December, for teacher holiday gitfs. I should find them by then. Promise.)

(Yeah, the ADD is just so much fun sometimes.)

And now? Starts Jake's week off.

Vacation. (For Him.)

No school.

No camp.

Camp Mom.

All Mom, all the time.

So if the blogging is a little light in these weeks?

It's not you, it's me.

Really.

Me and Jake, on break together.

(Ethan's last day of school is Friday. He starts camp Monday. Seamless.)

I love my Jacob to pieces, but when that school bus comes round to pick him up late next week?

I'm going to kiss the driver, I swear.

(Just kidding, Honey, just kidding!)

Jake is doing great, really great. Everyone says so.

But? He also still talking ALL. THE. TIME.

So we're going to keep busy, go on lots of "field trips" like the one to the Liberty Science Center last weekend.

Who knew plumbing could be this much fun?

You know what we'll be doing this Friday morning, don't you? (Hint: Jake has been announcing "Cars 2 coming to theaters on June 24th!" since, oh, last September.)

And after I put Jake on his bus?

The silence will be deafening.

I will revel in it.

At least until Ethan wakes up, requesting morning kisses and hugs, checking last night's final WNBA basketball scores (NY Liberty plays all summer), bringing his own special flavor of noise to the table.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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