Sweat Memories

Spring has now surrendered herself to summer’s sultry heat. As I stretch my loosening limbs and feel the sweat trickle, tickley, down my slick armpits, I get thrown, always, back through time's twisty tunnels: summers past rushing by, swirling their memories around me, tantalizing snippets.

Sense memories all, sticky, sweaty summers full of swelter and promise. One stands out, recently plucked from the memory box…

Summer of ’77. High school graduation; beginnings and endings, all rolled up into one.

Or maybe more like this: a constant tumbling head over heels of endings and beginnings, chasing each others tails, a blur of old and new and old and new; the wheel, spun again and again, the endless yin and yang of it, as I tried to make a 16 year-old's sense out of my life.

My parents loved me dearly, cherished me fiercely, but were often clueless. They didn't attend my high school graduation ceremony. I had been ambivalent about attending it myself, and by the time I decided to show up after all, they had made other plans; important plans.

Not nearly as callous as that seems, I'm sure they had asked me at least three times if I’d minded that they weren’t there.  And I'm sure I'd reassured them that it meant very little to me and I was OK. But I also know at some deeper level I was disappointed, feelings were hurt, a disconnect widened.

As a mother, I have learned to listen beneath, to the waves below the words; to discount, at times, the surface, the brave “I’m OK”s from little boys who aren’t. My mother never did, needing reassurance more than truth. Pity.

At sixteen, I was so very young and clueless, though I'd thought myself sophisticated, a worldly woman. I was sorting through so many things in my mind, and developing just about zero practical skills for negotiating an adult life in the actual world.

Navels were for gazing, and I did, how I did.

New York City (suburbs). 1977.

It was the summer of Sam; and Star Wars.

I remember waiting hours for tickets on opening week, the first time I had ever done that, with my last high school boyfriend, Ben. Sitting on the roof of his Black 1963 American Rambler in the parking lot of the Huntington Mall cinema, we were trying to catch a slim breeze as we waited for day to wheel into night and the movie's magic lantern to begin.

I have since seen that film dozens of times, but will always remember my first, seen with a last. Beginnings and endings tumbled together, wearing each other smooth like the rocks in the rushing river we camped beside, on the sweet and wondrous weekend road trip we took together that summer.

That summer of last high school boyfriend, while I was also quietly falling in love, unrequited, with girls right and left; my head and my heart in a tug of war (along with some select other parts).

I did not even have my plans solidified for the fall, having missed the drop-dead dates for completing college applications, my parents once again useless here, being "no pressure" individualist hippie types, never realizing that a sixteen year-old girl might need a little guidance, a little pressure to make things happen, barely knowing her own mind, leaf-tumbling through life, lucky beyond all knowing that life never tossed evil into her hapless path.

And the soundtrack to all this mayhem? Somewhere between Patti Smith’s Horses album on my stereo, Springsteen’s Born to Run blasting out of a jukebox, John Prine being strummed on my boyfriend's guitar and Abba’s Dancing Queen wafting in from a somewhere distant radio.

If the smell of being thirteen was Coppertone? The smell of sixteen turning seventeen for me was sweat; the intoxicating scent of fresh sweat, honestly earned.

And the salt taste of it, the startlingly metallic and musky tang of it, on my hungry, awakening, clueless tongue.


P.S. If you want to see me on the day of my High School Graduation? Go here: I Was a Senior Feminist-Hippie-Hottie  

This post was inspired by a prompt at The Red Dress Club. This week's RemembeRED assignment was to write a post about Graduation. 

Please click on the button above, go to the link-up and read the other wonderful posts you'll find there.
 


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SOC Monday (oops): Going Nowhere

Well, I'm a day late with this thing, but it's Memorial Day Weekend and so Monday feels like Sunday, no? That's my story and I'm sticking to it. It couldn't be that I'm just having such damn trouble getting anything done these days, no that's not it at all....

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We went nowhere this Memorial Day weekend. We being the kids and I. My husband went somewhere. he is in Milan. MILAN, people, as in Italy.

But he is working his ass off there, teaching an intensive class. So i can't really resent that he is in ITALY while i am alone in New york City in a beastly heat wave ALONE with the boys and nothing to do, nowhere to go, now can I, much?

I used to go places. I used to travel the country and the world on shoots, with plays, for film festivals. sometimes even just for fun.

I miss it, people.

My passport has expired. Ten years. Ten years since I've left the country. I don't do that work anymore. We don;t have the money to travel for fun.

And the kids? Are an odd combination of tough and easy travelers. They were real troopers on our recent sojourn to Lowell, Mass. for their cousin Greta's Bat Mitzvah (post on that in process, coming soon). but its still a hell of a lot of work for me to haul them anywhere.

I wrote a post about the physical (and emotional) baggage that comes along with taking Jake out. And i know that he's actually a fairly "easy" kid on the spectrum ,that there art people who literally CAN NOT go anywhere as a family. I am grateful that we are not on that sort of plane of existence.

But still, the big problem is.. we have nowhere to go. I can't just go somewhere, me and the boys - the two of them don't get along well enough to be alone together in tight quarters for days on end. In our home its bad enough, but without our computers and thousand toys  yikes! Plus Ethan has playdates here.

But going away with others? well, let's just say the invitations to stay with friends with country homes? Just don;t roll in. My close friends love Jake, always tell me how amazing he is, but Jake for the whole weekend? would give anybody pause. Means it will not be quiet and restful for anyone in that house. even my friends who love Jake to death? They have husbands who have not signed on for autism. 

I don't know any families with autistic kids who get invited away for weekends. (And Ethan is a handful in his own way, too.) And also many of my closest friends? don't have summer houses anyway, are trolling for their own invites.

So we puttered around the city, went to movies, swam in a ridiculously overcrowded city pool (boys loved it anyway) ate too much junkfood, spent too much time on videogames/computers, had a bunch of playdates.

It was a pleasant, not dreadful, weekend. I am now completely exhausted, and have a week ahead of me I do NOT look forward to - dealing with my mother's 19 year old about to die cat who has become incontinent and will likely need to be put to sleep.

But still, it would have been nice to be able to go away somewhere. I miss vacations, travel, excitement.  I would like to be in Milan.

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Oh, I am so sorry. Was not intending this one to be a whiny rant, but that's where it went anyway. I'm tired of being tired, folks. I'm feeling mighty short on wit these days, sorry. I will try to return to witty or lyrical or something else soon. 

New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the link and let's hear your 5 minutes of brilliance...

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SNSS: Sisters

Our lovely guest today is a woman who needs no introduction (but, of course, I will be providing one anyway) for it is none other than Jess of a Diary of a Mom. Jess has been blogging about autism longer than many of us, and, from the very beginning, she has been an amazing connector, a community builder, generous, reaching out to all. 

In 2009 Jess wrote, Welcome to the Club, a letter to help guide and ease the fears of parents whose children have been newly diagnosed on the autism spectrum. If you know anyone in this situation, please send them to this important post.

Her most recent efforts? The "light it up blue" autism awareness campaign whose letter to President Obama got her an invite to The White House for their Autism Awareness Month community event, an extraordinary experience which she then (again, generously) shared with everyone via her blog. (You can read about this here, in parts one, two, three, four, five, six, and seven.)

On the personal front, Jess is a mother to two daughters. Her youngest, Brooke, is on the autism spectrum; Brooke's older sister, Katie, is not. Katie is incredibly loving towards and helpful with her sister, and theirs is a beautiful story.

Jess is exquisitely sensitive to the needs of her children, to a depth rarely seen. And to combine that exquisite sensitivity with such powerful, moving, beautiful writing; and add in her strength of will, her community-building character? Is the reason why Jess and her blog are beloved and read by so many.

It is also the reason that while every other SNSS post so far has been original to this series, this one is not. Jess so wanted to participate in this series, as the relationship between her daughters is very important to her, but she just had too many commitments; it was impossible to add yet another plate to the many she is keeping spinning right now. So Jess asked if it would be OK to use a previous post of hers instead, as she has written often on this topic, near and dear to her heart. 

I felt that Jess and her place in our community was too important not to include here, so I have chosen this beautiful post about the relationship between her daughters (originally published in April, as "what she needed") to share with you today for Special Needs Sibling Saturdays.

I am sure many of you reading this already know and read Jess, but for those who don't you are now in for a special treat...

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Sisters - by Jess

She showed me the picture covertly so that Brooke wouldn’t see it.

“Look, Mama, I drew Brooke as Rapunzel in the tower and that’s me, climbing up her long hair to come save her! Don’t you think she’ll love it?”

Katie had been working on the picture for nearly half an hour before she finally decided that it was done. She presented it to Brooke with a flourish.

“Look, Brooke,” she said, beaming. “I made this just for you.”

Brooke took the paper from her and without so much as a glance handed it to me. “I don’t want it,” she said. “Sorry.”

Brooke and I had a chat. Ultimately, the best we could do was a parroted, “Thank you, Katie. That was very nice of you.”

Katie was crushed.

Later that day, Katie and our sitter, Julie had a special outing to the mall. For her birthday, Julie had gotten her a gift card to her favorite shop and had promised that they would hit the mall together to do some shopping. Katie couldn’t wait.

She’s been begging for a trip to the mall alone with a friend. (Not quite there yet, kiddo.) So the half-step toward independence meant the world to her. She had packed up her gift card and tucked her very own money into the wallet in her very grown-up purse.

They’d spent hours at the mall.

She came home carrying a shopping bag, flush with excitement. She pulled me in close for a secret. “Mama,” she said. “I got Brooke the best present EVER! She’s going to LOVE it! You know how she keeps saying she wants earrings just like me but we know that wouldn’t really work cause she’d try to pull them out cause they’d hurt? Well, I got her MAGNETIC earrings! Isn’t that the BEST? I’m sooooo excited!!! OK, shhhhh! Don’t tell her. I can’t wait to see how happy she is when she sees them.”

She reached into her shopping bag and pulled out a small, hot pink gift bag. She’d even thought to get a gift bag in her sister’s favorite color. “Brooke!” she yelled. “I got you a present at the mall!”

Her sister looked up from her drawing.

“You did?”

“I did. Want to see what I got you?”

Katie was beside herself. She couldn’t wait to see her sister’s reaction.

Brooke pulled the earrings out of the bag, set them on the table and went back to her drawing. “I don’t want them,” she said. “Sorry.”

Katie tried to explain. Perhaps she didn’t know what they were. Maybe she just didn’t understand. “Brooke, you can be just like Katie. See, they’re earrings, like mine. Look, Brooke, this is what you do with them ..”

Brooke let out a sharp shriek, then yelled, “I DON’T WANT THEM. SORRY!”

The dam broke. Katie couldn’t take it anymore. I talked to Brooke briefly. Said the same things I’d said earlier. Told her we’d talk about it again later.

Katie and I walked together into the kitchen, carrying the cast-off bag. I peeked inside. There were two other pairs of earrings in the bag that Brooke hadn’t even seen. I turned them over – $5.95 each. On her big trip to the mall, my girl had spent eighteen dollars of her OWN money on something she thought her sister would love. To no avail. Eighteen dollars.

I held my girl as she let it all out, the words tumbling over each other as she sobbed. “I just wish that there was a shot or a pill or something, Mama. Something, anything that Brooke could take that would make her autism just go away. I’m just so tired of it. I just wish I had a typical sister. I’ve just been trying so hard. I just want to show her that I love her but nothing’s working. Nothing.”

I said the right things. I did. I told her that she is the best sister that I ever could have imagined. I told her that she doesn’t always have to be, I told her that Brooke knows how much she loves her – that it would be impossible for her not to. I told her that she doesn’t always have the ability to show that. And above all, I told her that I know how much that hurts.

I told her that I understood. That from the bottom of my heart, I understood. I told her that Brooke might very likely come back to the earrings later. It had been a long day and she just might not be able to handle something new. But I knew that wasn’t the point anymore. When there was nothing more to say, I held her and let her cry.

Last night, after presenting the Autism Awareness mural to the mayor, we went out to dinner at a local mall. During dinner, Brooke needed a walk. “Ooh, Mama. May I take her, please?” Katie begged, just like she always does. “I promise I’ll be responsible!”

We’d never agreed before, but the mall was quiet and it seemed like a good opportunity for a first run. Brooke resisted. “No, Mama would.”

With some cajoling, she agreed to walk with her sister.

We gave them strict parameters and then watched them walk away. Two minutes in, Luau said, “You going or me?” I got up and headed in the same direction.

By the time I reached them, they were headed back toward me, walking arm in arm. Periodically, Brooke would spin out, then come back and re-attach herself to her sister. Each and every time she came back, Katie’s arms were open.

Brooke stopped walking in front of the entrance to a shop. I wondered if she was going to go in. Instead, she leaned into her sister and hugged Katie for all she was worth. Katie hugged her back, grinning from ear to ear. I felt like a voyeur as I feverishly snapped a picture with my phone.

They began to walk again, slowly, lazily. Katie kissed her sister’s head and said, “Thanks, Brooke, I needed that.”

And her Mama thought, “Me too, baby. Me too.”

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As you can see from what have just read, Jess is an "Autism Mom" extraordinaire.  I do not say this lightly: I have never yet met a parent more aware of exactly who each of her children are, and what they specifically need as Jess. She is an inspiration and a role model for me, truly. 

And now? You really must go back to Jess's blog, a Diary of a Mom, and read more. She doesn't have a "best of" page, but that's OK because you can click on any month of her archives and just start reading and you will be astounded. But let me point you to a few specific posts, anyway: 

For more about the relationship between her girls, these posts, from last October's "Spotlight on Siblings" week are wonderful: this pair about another sibling reaching out to Katie, big sister as little sister and little sister becomes big sister, are extraordinary. Also this one, and this one are truly touching.

And then, because telling her own family's story is not enough, here is a great post about how to help YOUR children: what siblings would like parents and service providers to know.

Whatever she is writing about, Jess so honestly and beautifully shares her love, her fears, her joys and her heartbreaks. Go, read! (And have a box of Kleenex handy, you'll need it.)

And of course, Jess is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 17th of every month.   

Finally, you can find and follow her on Twitter and "like" her on her Facebook page, where she is, of course, building yet another support community. 


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I Was a Senior Feminist-Hippie-Hottie

What?

When of Liz of a belle a bean and a chicago dog came up with the fun idea of posting photographs of ourselves from our senior year of High School, I'm sure she was thinking most moms would be coming up with late 80's and early 90's style: big big hair, big sweaters, neon bright make-up and leggings. Well, ladies I'm a good bit older than y'all.

When Natalie from Mommy of a Monster & Twins was graduating high school in 1992 and rocking her glamour style?  I was a 32 year-old bride (my "starter marriage", not the one that took & gave me my boys).

My high school senior year? 1977, baby! And while technically the hippie era was over by about 5 years and punk and disco were vying for the official "youth style" title, my friends and I were nostalgic throwbacks. All artsy-fartsy, hippie-dippy, loosey-goosey, anti-materialistic. Also? Budding feminists.

So in my box of senior year pictures (if I could find it) you would NOT see: make-up, prom pix (didn't go, didn't believe in it - too bourgeois) big hair, big shoulders, or underwear (didn't wear it, didn't believe in it - too bourgeois). Sigh. (My kids better not follow in my footsteps.)

What you would see: my natural curly hair (in that awkward stage of being grown out), lots of loose cotton clothing from India via Manhattan's MacDougal Street, hairy legs & pits.

There aren't a lot of photos of me from that year, for, you see, I was a Photographer, to be found on the OTHER side of the camera, a Creator, no mere passive female object. (Did I mention I was starting to become a bit dogmatic and insufferable that year, in that way teenage zealots can be? Maybe just a tad.)

Well, I actually managed to dig up three photos from my senior graduation day, none official (horrors, perish the thought!) but these few blurry, dark photos do prove that I did actually show up at my graduation, in spite it being a, you know, patriarchal, conservative institution and all.

Maybe because there was a great graduation party that night. A girl's gotta have her priorities straight, after all. 

So here is me circa June 1977, on the front lawn of my house with my parents, Graduation Day:

Me & Mom, Graduation Day, June 1977

 Me & Dad, Graduation Day, June 1977

Me, Graduation Day, June 1977

And was I wearing a skirt as a strapless dress that day? Why yes, yes I believe I was. What? It was freaking hot in June. A skinny 16 year-old can get away with that shit, right? In 1977? You betcha!

I was a Senior Feminist-Hippie-Hottie, for sure!

Come dig out your pictures and link up, too!

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13 Things to Do in the ER for 30 Hours

I had all kinds of plans and ambitions for my life and blog this Monday and Tuesday, which all came to naught because of one of *THOSE* phone calls I received Monday, early afternoon.  A classic "your mother isn't feeling well and we think she should be seen by a doctor right away" phone call.

So out went the Book Expo 11 plans, including a tea party at Random House with the fabulous Lisa See. Out went my Red Dress Club  RemembeRED memoir post.

In came the grueling grind: sleep deprivation and worry and tedium and adrenaline and annoyance and rage and acceptance and stupor and... a lot of sour lemons. So I made the bloggers version of lemonade: whipped up a post about it.

It is now late late Tuesday night, and my mother has FINALLY been admitted to a proper bed in a proper room on the appropriate ward. I wrote this post Monday night between midnight and about 3 AM, typing with my thumbs on my little no-keyboard Droid cellphone. That I still had functional thumbs today? Nothing short of miraculous.

So without further ado, I bring you:

13 Things to do in the ER while waiting with your 88 year-old mother for them to find her a bed and move her the hell upstairs:

1.  Eat 2 packs of peanut M&Ms for dinner. (What? Like you've never experienced vending machine cuisine at its finest?)

2.  Read The New Yorker you brought with you cover to cover, even the articles about obscure sports figures you don't care about and the reviews of movies you were never planning to see in the 1st place.

3.  Feel inordinately proud of yourself that you managed to snag, vulture-like, from the patient vacating the berth next door: the pillow your mother's head is dizzily resting upon and the hard, narrow, plastic chair that is currently causing you a literal pain in the butt. As there are so very few of these rare and valuable commodities in the insanely overcrowded ER, you had to consciously restrain yourself from performing a fist pump of victory upon their procurement.

4.  Calling overcooked fish, white rice & soggy mixed veggies "a meal" and pouncing upon it with your mother when it arrives at 8 pm after 6 foodless hours spent in the ER.  (Also? Feeling like a genius for re-purposing the "real lemon juice" packets provided with the tea to make the fish vaguely palatable.)  

5.  Wish you could shut your ears and not hear, the same way you can close your eyes and not see, so as to not have to listen to the 15 minutes of crying, screaming, wailing, cursing, gurgling and pleading going on in the curtained bay next to yours as a young woman has "about a gallon of pus" surgically drained from abscesses in her jaw. Realize how many doctors really do have impatience with, and markedly little empathy for patient's pain. (Be incredibly grateful for the amazing man who is your mother's - and was your father's - eminently patient & empathetic cardiologist. A menschier doctor does not exist.)

6.  Try to hold the lockless stall door closed by sheer will as you pee as quickly as female-humanly possible in the filthy visitor bathroom that you had been hoping not to encounter, but just couldn't hold it in any longer.

7.  Tie the undone shoelaces of the incredibly adorable 3 year old girl who has sidled up to you in the outer waiting room and tapped you on the knee to request assistance with said task, while her bedraggled mother simultaneously tries to fill out paperwork & calm her screaming, ill infant. Give up on trying to answer an urgent email and play with this sweet child for the last 5 minutes of your 10 minute "plugged-in" break from the inner ER electronic blackout zone. Return to your mother with a smile on your face.

8.  Try not to cry, yourself, as you (expecting tears and howls) break the news to your autistic son that you will NOT be home to put him to bed as you had PROMISED him you would be this morning, kissing him goodbye at the school bus door. Be surprised and thankful for his calmness, but even more wrenched by his brave little "OK, mommy I'll see you in the morning." Pray they find a bed for your Mom before 5 AM so as to make THAT one true. (They didn't.)

9.  Listen in to the weary mother of the young man in the next-door berth to the other side as she explains to the hospital security guard for the 10th time why she cannot leave for the standard shift-change visitor clearing protocol, as her non-verbal, seizure-prone, mentality challenged son would be completely lost and unable to communicate without her by his side. Try very hard not to start thinking about how life will be if Jacob still has significant communications problems when he is a man, no longer a child, and my presence by his side will be constantly questioned, his disability invisible.

10.  Be eternally grateful it's just an "ordinary" busy Monday and so we're not being "entertained" by one of the loud, drunk/high, belligerent & yet also inappropriately amorous couples who always manage to show up in the ER on Saturday nights. (I had enough of THOSE on my train ride from Boston to Lowell two weeks ago.)

11.  Laugh when your Mom loudly contemplates what she can possibly lift from the stocked supply shelves you pass, walking her to the one non-filthy patient bathroom on the far side of the ER. Make her laugh as you invent imaginary uses for the pink bedpan you assume she plans on stealing.  Look the other way as she nicks a mini tissue box: "It''s such a convenient size!"

12.  Try not to think about why you know this ER like the back of your hand, can find your way through the catacombed passageways of this hospital's lower corridors like a resident, pushing back against the tide of memories of your father spending much time and mother-in-law dying in the selfsame ward they are seeking to place your mother in, tonight.

13. Two words: angry birds. Two less fun words: dead battery. Two even less fun words: puking toddler. (And yes, a hurling pediatric patient missed my feet by inches today when my Mom was in triage. But it was sweet to hear him say afterward: "I feew bedda now" to the surprised nurse.)

And? that's all folks. Wish us luck!

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Well, we finally got the luck... some 30 HOURS late.  Much more hilarity ensued, more stories to tell... another night. 

Now? TO BED.


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SNSS: Sibling Saplings

Today's guest poster blogs as the Spectrummy Mummy at her eponymous blog Spectrummy Mummy.  As you can tell from the vowel choice, she is not American, but rather an Englishwoman, whose American Foreign Service Corp husband has been posted back stateside for the past few years.  

We about to lose her to another country soon, and I was thrilled to have had the chance to meet her recently, however briefly. I can happily report back that she is even more lovely in person than on her blog (never a guaranteed thing, as many of us have found out at meet-ups and conferences). 

Spectrummy Mummy is the mother of two young children, a four year old daughter, Pudding, on the autism spectrum (currently holding an Aspergers diagnosis) and her little brother, Cubby, just turned two, who, while not on the spectrum, has sensory issues. Of the exact opposite type as his sister. 

You can see it's a busy, complicated household. Add in the impending move overseas, and a mother could easily become overwhelmed. Yet somehow Spectrummy Mummy manages to keep her calm, clear focus on her children and what they need; manages to keep an open heart, a loving, thankful perspective.

And then she writes about it so beautifully, too. As you will see here, read ...

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Sibling Saplings - by Spectrummy Mummy

I was born and raised in the same place.  My roots grew deep into the soil.  I shared a childhood with my friends, and with our years of shared experiences, we remained friends as we became adults together.  My chosen sisters.

I wasn't close to my brothers growing up, but planted side by side, as we've grown older, our branches have intertwined.  Though I live on a different continent, I feel that we're probably closer now than ever.

It is different for Third Culture Kids like mine.  My little saplings are transplanted from one country to another every two or three years.  Their roots don't get a chance to bury into the ground, but spread like vines across the world.

Many Foreign Service children find it tough to make friends, and instead rely on the closeness of the sibling relationship-friendship with the only person to understand and share their life.  It is not uncommon for such children to describe their brothers and sisters as best friends.  That is how I imagined things would be for Pudding and Cubby.

The seeds were planted two years ago, when Cubby was born, but the signs of autism were emerging in Pudding.  Pudding's sheltered little world was disturbed by this chaotic, screaming, routine-breaking, parent-snatching, attention-stealing, unpredictable bundle of need.  From the very beginning, she was conflicted about his arrival in her life, resenting and pursuing him at once.

Sensory-seeking Pudding was too boisterous in her attentions, and the sensitive-avoider Cubby would scream whenever she came near.  Pudding would lash out at him, or withdraw into herself.  A relationship between the two of them seemed impossible.

I would try to come up with games or sensory play that they might share in together.  Inevitably, it led to fighting and tears.  Everybody felt frustrated and miserable, myself included.  Pretty pathetic for what was supposed to be fun for all.  So I gave up.

I'd concentrate on one child at a time.  Finding something else to occupy the other, or making the most of Cubby's nap time, or the times that my husband was around so we could, at times, divide and enjoy our only children.  I let go of my expectations of the kind of siblings they'd be, and let them just be.

Now things are really starting to change.  Since Cubby turned two, the developmental gap between the two of them is closing.  They find each other funny, get into trouble together, blame each other for their mischief, and fight too, of course.

But mostly, they play; sometimes side-by-side, sometimes even together.  I didn't need to teach them, they are figuring it out together, dare I say, like ordinary siblings.  Ordinary being a word I don't tend to associate with either of them.

I think of Cubby as a sort of hybrid plant.  He has sensory processing differences, like his sister, but without the communication challenges.  He can already tell us with his words the things that bother him, which Pudding would only show through her behavior at this age.  The more I learn from and about one child, the more I can understand, and apply it to the other.

They are still very young, of course.  I don't know what will happen when Cubby's development surpasses that of his sister.  I don't know if autism will create distance, or if moving will bring them closer.

All I do know is that they are experiencing the world together in a way that nobody else is.  They have a unique connection.  The shoots of a budding relationship have appeared.

It is a connection that grows organically, and is cultivated by the two of them alone.  When Cubby couldn't bear to be touched by his tactile-loving sister, she was the one who covered him in stickers, and he let her.  Pudding struggled to do her yoga homework for occupational therapy, and Cubby was the one who motivated her.

She was the one he sought for a hug when he was distraught at his parents for a blood draw that went wrong.  I just have to leave them to it, which is the part I find difficult.

In amongst the thicket of squabbling and demands, they are flourishing.  They are still very young, and they have plenty of time to grow together.  My hope is that if I can just stop trying to propagate a relationship between them, a beautiful togetherness will blossom.  Perhaps it will be perennial.

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I  am truly touched by this sweet, moving, lyrical post; the image of her children as plants growing side by side is one I will keep with me for a long time.  

I am thrilled for Spectrummy Mummy that Pudding and Cubby are starting to find their own way into a relationship now. I can feel how they will grow together, how Cubby will support and help his sister (when he isn't busy annoying her, as little brothers are wont to do).

So now that you have gotten a little taste of her here, you will surely want to go over to Spectrummy Mummy's blog for more.

Be sure to read this lovely post about her awkward daughter transforming into a Mermaid in the water, this moving one about a day when everything was all too much and Spectrummy Mummy dissolved into tears, or this insightful one about how Behaviour Is Communication (note British spelling, she's an Englishwoman for sure).

Also? Spectrummy Mummy is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 19th of every month.  And she posts at the SPD Blogger Network. (Busy woman.)

Finally, you can find and follow her on Twitter and "like" her on Facebook, where she is just as lovely as she is everywhere else. 

Thank you again, Spectrummy Mummy, for sharing your beautiful, growing, sapling children with us. 

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E is for Ethan

E is for Ethan

Could it be otherwise?

I don't think so, for he is the big "E" in my life.

My firstborn.
 
By one minute.

(Not that he ever lets me or his brother forget it.)

So, for once, this won't be all about autism, though it certainly informs and affects Ethan's life, presses in upon him.  And he likes that not one bit, declaiming with wailing voice, "Why did I have to have a twin brother with autism? Why can't I have a regular brother, like other people?"

And I have no answers for him, no easy solace, no words of comfort, other than to agree that it is indeed hard. But also this rejoinder: that we don't pick the families we are born into, that we all just have to play the hand we're dealt.

And I hold him while he cries. And I remind him of the wonderful things about his brother, while making sure he knows it's OK for it not to be OK.

He is allowed to be mad at, even to hate and resent his brother. He is not allowed to be cruel to him, a line clearly drawn in the sand.

Ethan, the boy, will talk about his feelings. I hope this is something he can retain, that it will survive the rough pitch and tumble of male adolescence, let him grow into a man who will talk about his feelings openly with his closest friends, with the woman he loves.

Ethan, the boy, is passionate. He loves his friends, basketball, computers, and his toys/collections.

His current obsession? Gogo's Crazy Bones. Never heard of them? Then you're probably not living with a 7 to 9 year old right now.

He is of the age of changes. From one minute to the next, quick and quixotic, patterns long stable are shifting, tossed aside as he stretches his "big boy" muscles, both literal and figurative.

Conversations with Ethan are still so often delightful (except when he is going on and on about Basketball players and game stats, and then I am looking for the knitting needles to puncture my eardrums with).

I am still central to his life. And I hold my breath knowing that I will blink and he will be releasing my hand as we walk down the street, moving on into Tweendom; and then beyond.

Looking forward is a little scary; unknown adventures in parenting await. So let me look back for a moment, tell a story from the beginning:

Ethan was newborn, still in the hospital, maybe 2 days old. I was looking at him versus Jake, marveling at how vastly different they were from each other. Not quite night and day, but barely twin-like.

Jacob was a newborn straight out of central casting: a big-headed, Winston Churchill resembling, bald but for tonsure-like blond fringe, classic Gerber baby.

Ethan... not so much so. With his smaller head, fine features, visible and expressive eyebrows, scalp covered in dark but thin and sparse hair, including seeming sideburns (that led us to quip we should have named him Elvis instead) he resembled nothing so much as a miniature middle-aged balding guy. Seriously. But in a cute way.

So that day, when he was sleeping in my arms, I leaned down and whispered in his ear: "I know your secret: you're not really a baby. In reality, you're a tiny forty year-old man, somehow magically transformed into an infant. But don't worry, I won't tell anyone, your secret is safe with me."

As soon as those words were out of my mouth - I swear this is true - still deep asleep, his mouth broke into a giant grin and his eyes popped wide open then rapidly rolled back and forth in a crazy fashion.

This went on for about 5 seconds, a near perfect rendition of a Groucho Marx comedic eye roll. Then his eyes snapped shut, his smile vanished and he was once again, simply, a sleeping newborn.

But we had shared a moment; and I knew, I knew.

Here he is, then:

Ethan, 5 minutes old

And now:

Ethan 8 years old

Being the mother of Grouch Marx, reincarnate, isn't always easy; but it's never dull, often highly entertaining, and always deeply rewarding.

E is for Ethan...

Energetic, enthusiastic, enchanting, exhausting, extraordinary, eminently lovable.

My son.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And now, of course, "E" is one of my very favorite letters. Bet you can guess the others.

I'm also linking this post up to Maxabella's I'm grateful for...  because I am eternally grateful for my son, Ethan.


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Dunia

Asked to picture my grandmother in her vital days, before the stroke that laid her low, creating the shadow who hovers dimly in the background of my later childhood years, this image comes:

Dunia, in her kitchen; yellowed light from an ancient ceiling fixture suffusing everything with a sulfuric glow, wiping her hands on her ever-present stained apron, a cigarette stuck to her lower lip, as if by glue and not mere spittle, the red edge of a pack of Pall Malls peeking up out of the apron's torn pocket.

Moments before, her hands were furiously busy with wooden bowl and gleaming blade, chopping up the eggs, onions and chicken livers whose frying smell hangs close, blends with the cigarette smoke to create a thick haze in the kitchen: the smell of Grandma Dunia's house. (I have that chopper now, passed down the maternal line, its metal handle still retaining a hint of the red paint that once caught my eye, there in my grandmother's kitchen.)

Outdoors the air is fresher though also strange, dank, loamy; her yard deeply shadowed by old tress, old bushes grown tall and feral. The lilac that stands by our own garage door comes from these here, my flower-loving mother happy to have a piece of home with her. But somehow, here, even the lilacs seem dour, moody, menacing as they tower over me, the smallest, palest thing around for miles.

The old swing-set in the backyard is miraculously still standing, and I push the upstairs tenant's twin toddlers higher and higher to their squealing delight. At eight, I am the big girl, enjoy watching the little girls' flashing smiles, marvel at the many tiny pink-barretted braids it must have taken their mother hours to tame their hair into.

I do not know this will be my last visit, that my grandmother's days of independence are swiftly numbered. I will miss spending time with these little girls, the only young, new things in this creaking old house.

Finally the gloaming completely engulfs the yard, a perfect background for the fireflies dancing delight. But it is time to head inside, the night being no time for young girls to linger outdoors in this now rough neighborhood.

Smoke swirls through all the rooms of this house, as my grandmother lights one cigarette off the dying ember of the previous, a chain that will, by necessity, end the soon-coming day she keels over.

My mother, once a smoker too, now quit, waves her hand in front of her face to clear a small circle of air, hoping to breathe freely.  She knows better then to ask her mother to stop smoking, in spite of the wheezing it now brings on. She knows better than to ask her mother for anything, empathy and generosity running decidedly short in this house.

We do not visit often, but when we do I marvel at how different it is here than in my home. Her ancient standard poodle skulks like a ghost from room to room, large and silent, its one eye turned milky strange, a frightening apparition to a child used to frisky cats.

The television is round at the edges, encased in a huge wooden cabinet, almost unrecognizable to me, but for the comfort it provides; the familiar images appearing therein reminding me that I still inhabit the same solid world, though the frame has shifted.

While I watch TV, the grown-ups talk and talk. I do not try to listen in. When my grandmother tells a joke, though the telling is in English, the punch line is always in Yiddish, a language I do not understand. Even the laughter here bears a sharper edge, a tang, is not easy and light. 

When it comes time to leave, my mother comes to sit in the back seat with me, her lap my pillow, a sleepy girl's fondest wish. The car's windows are open, inviting night's fresh air to rush all around us, and we gratefully inhale.

She strokes my head, her hands ever gentle with me, as her mother's never were with her.  And I drift off, knowing I will wake up in the arms of my strong father carrying me from the car, bringing me home.


Curious about my unusual Grandmother? I have written about her before: here, and here.

This post was inspired by a prompt at The Red Dress Club. This week's RemembeRED assignment was to write a post inspired by this photo:

Please click on the button above, go to the link-up and read the other wonderful posts you'll find there.
 

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Search Me

Searching for a little levity today, I thought I would list some of the web searches that have, rightly or wrongly, driven people to my blog. Thank you, Google, for this:

"pokemon with a generalized anxiety disorder" (guilty as charged)

"allie brosh and stalking" (Just for the record, let me make this clear... I have NEVER stalked Allie Brosh. In fact, *she* stalks me. Yeah. Right. OK, well, maybe just a little stalking... but only cyber-)

"beyblade cake" (probably this July, that's what I'll be making)

"sandwich generation angst" (Oh, yeah, we got that! Also? On first page for this one on Google Search. YAY!)

"jokes about the sandwich generation" (a few, if you consider my quips about my Dad about to lose his toes "jokes." I'm generally funnier about my kids.)

"jacob is a poopy head" (No, no, Jacob sings "Ethan is a poopyhead!" and "Twinkle, twinkle, little poopyhead." Can't they get anything right?)

"bologna and autism" (Nothing to add to this. Except, yes, Jacob does eat bologna. Organic turkey bologna. I don't *think* it has anything to do with his autism.)

"everyday is autism awareness day in my world" (mine, too!)

"good sandwich based on gems" (Hope they weren't too disappointed. Guessing my "Blog Gems" post triggered this. Also?  Wouldn't that be a bit too... crunchy?)

"autism mom blog" (Biggest "Duh" on the planet)

"confessions from the sandwich generation" (Not so much confessing as whining, bitching and moaning, but I'll take it.)

"bologna odor in walls" (Guessing if they truly needed help with that they didn't stay long. Also? Eeeeew!)

"origin of because y is a crooked letter" (Yeah, I wrote a post about that, my Grandmother's favorite saying. Well, actually it's a toss-up between that and "put your tuchis on the table")

"do autistic children like chuck e cheese" (Mine does, but he is a sensory seeker. But for a sensory avoider? Let's put it this way... the first time we walked into a Chuck E Cheese my husband turned to me and said: "This is where we'll go when we die if we've been VERY, VERY bad." And he's not even autistic, just a man who likes a bit of calm and quiet.)

"spring is here and i can't wait for summer get along with friends" (good luck with THAT)

"how to include typical siblings in special needs childrens lives" (When you come up with the answer, would you please come back and share it with me?)

"ironman childrens regalia" (yes, Jake has gone there)

"sweaty girls" (needless to say this person was very disappointed)

"coppertone" (Yup, wrote one on that!)

"coppertone ass" (Nope, did NOT write one on THAT!)

"autism mom" (Me, me, me, me!)

"why different pronunciation of bologna city and meat"(You know I've been wondering a bit about that myself, but actually don't really care as long as you pronounce MY blog name right.)

"momsomnia" (Don't think I was the first one to coin it, but I amused myself when I came up with this word. Became less amusing as I found need to use it a lot.)

"thoughts for my son" (every day in every way)

"want to get direction in my life" (Oh, man, so do I, so do I. Sorry I'm not gonna be much help here.)

"world laughter day parties" (I LOVE this. Wish I were at one.)

"not allowed to be sick" (definition of a Mom)

"my parents are getting old" (In my case? Not so much the getting, more the "are" - or "were" in the case of my Dad.)

"life with jake, autism blog" (Yes, that's us. Also? There are a LOT of Jakes out there, so maybe we weren't the one you were looking for, but I hope you pulled up a chair and stayed a while anyway.)

"sibling rivalry good or bad" (Yes.)

"special needs parents, parallel lives" (Well, there's -unfortunately- a lot of us out there. Don't know if you found your parallels here, but hope you found something relatable.)

"ethan sharer" (Sometimes. Others it's Ethan: hoarder, but we're working on that.)

"television is a drug" (They were probably looking for the video of my friend Todd Alcott's monologue, but since I embedded that in my post, they got the 2 for 1 deal.) 

"autism growing older" (It sure is getting old around these parts. Or maybe they meant autistic kids getting older. Wrote about that, too.)

"homework wars" (Been there, done that. Both boys. Wish we weren't in the trenches.)

"mayday mayday" (Yep, I put out that call a few weeks ago. Of course if they were really on a ship going down, my post wouldn't have been much help to them. Of course if they were really on a ship going down why would they be wasting time Googling shit, anyway?)

"he really needed to pee" (Did I mentions I have boys? Boys who often get too distracted to... take care of business in a timely fashion, and so aim is not their top priority when doing so? Have I mentioned that in spite of spending at least a half hour each day cleaning around our ONE toilet, it STILL usually smells like a Parisian alley in our ONE bathroom?)

"autistic little boys love their moms" (That they surely do, yes!)

And? That's all folks!

But also (because when do I ever really shut up that easy) I want to give credit where credit is due.. .

I had been mulling over doing a post like this for a while, and had already gathered quite a few of the more interesting search terms people had googled to find me when Spectrummy Mummy wrote HER post about the same, "Googled."

She inspired me to get this damn post finished and up. Also? Her post is fun and worth the read too, so go over and do so.

Plus? Come closer, let me tell you a secret...  she's my SNSS guest poster this upcoming Saturday.  So now you are in the know. It's a completely lovely post, and I can't wait to share it with you.

And now? That's really all.



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SOC Sunday: Cumulative Stress

Been Sunday for many hours now and I've been trying to drum up two brain cells to rub together to write my SOC Sunday post. Finally: one boy is asleep and the other is enthralled by the Basketball game. There is food in my stomach and I *think* I may be able to locate my brain if I try really, really hard. Here goes.... 

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Sorry folks, I know this is not going to be the world's most pleasant stream of consciousness post when the phrase that pops right into my head as soon as I sit down to write is:

"Cumulative stress"

Because that's my theme song these days. As in: when asked how I am and I give a lukewarm "OK, I guess" and then am pressed for details and there's no one thing I can name, no BAD EVENT, it's just..."cumulative stress."

As in: I just tweeted "Cumulative stress has just worn me down to a nubbin."

As in: 8 years of living with autism = 8 years of cumulative stress.

And yes, I got away last weekend and it was lovely but it was 2 and a half days. and even though I was away? I was still the one in charge of my kids - I got 10 calls a day, had to track down a playdate connection, had to keep popping out of my seminar to make sure that my babysitter  and my friend's babysitter had figured out how to hook up.

Had to plan all the meals and spend hours before I left doing Jake's vitamin pours, so while my body had a break, my brain was still at least a little bit hooked in to the family the whole time.

And so there is no such thing as a 100% break for me, because at eight and a half years old, Jacob is still, essentially, a 3 year old. He must be watched and cared for; cannot yet explain what he wants and doesn't want clearly enough, cannot advocate for himself effectively in any meaningful way.

Ethan? I could walk away from for a whole weekend and beside two or three "I love you" phone calls, i know he'll be fine. I had set up playdates, including a sleepover. I knew he would inform his Dad  or whoever else was looking out for him at that moment what and when he eats, etc. etc.

But Jacob? Still needs the tending and THINKING FOR a young child needs. and 8 and a half years of that has... worn me down to a nubbin.

I feel i can;t think clearly, I know my mind is running more circularly than it should. I need a REAL break, a complete vacation.

I want my old brain back, the sharp one I had before I had children, before I turned 50 and stopped sleeping.

sorry for my umpteenth whiny rant. But that's the consciousness that streams forth from me right now.

Hope your weekend was sunnier.

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I originally wanted to call this post "Attempting to pull my head out of my own ass" but figured the good-taste police would come get me. And then I was going to call it "Have you Seen My Brain?" but that was just too cute. So then I just said "screw it" to the witty title search, went with the basics.

Also I have a FUNNY POST all set to go up tomorrow. Really. I promise it won't be all whiny rants, so come back tomorrow, don't give up on me, OK?

New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the link and let's hear your 5 minutes of brilliance...

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SNSS: Special Needs Squared

Our guest blogger today at Special Needs Sibling Saturdays, the OTHER Julia Roberts, has challenges few of us could imagine, no less face with the grace and tenacity that she has.

Julia's children are BOTH affected by the same rare genetic disorder (ARPKD), and her blog, Kidneys and Eyes, is named for the main physical manifestations of their condition.  

Julia has been blogging for much longer than most, documenting her son's and daughter's many struggles, from the big things like their kidney transplants to the small day-to-day challenges of life with immunosuppression, which can turn big at a moment's notice.

Besides this shared physical disability, their lives were further complicated when her son developed mental health troubles that have deeply impacted his relationship with his sister, and caused Julia no small number of sleepless nights.

Julia is also, like the rest of us, just a mom, loving her family and trying to keep them safe and happy. That in her case this task is Herculean, Sisyphean? Well, she is certainly the right mom for the job.  

But why take my word for it, read her own lovely words here:

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Special Needs Squared – by Julia Roberts

When my son was nearly 3 and his sister was almost born into our family I wrote this long, heartfelt letter to him that our lives were about to change but that I loved my alone time with him until that point.

Tears streaming down my face. It was very dramatic.

I look back at that time and laugh a little bit. I didn’t know at the time that welcoming a girl into our family was the least of our worries.

Two days after she was born she was diagnosed with a rare kidney disease and three months later he was diagnosed with the same disease. In turn, she was diagnosed with the rare vision disorder we’d known he’d had since he was 12 months old causing low muscle tone and developmental delays.

Before I knew it, I was hauling them to 13+ therapy appointments a week, multiple doctors visits and ultrasounds and I began holding them down for the first of hundreds of blood draws. I refer to those first 6 months as “The Fog” because I don’t remember how we had our regular needs met as a family of four.

Our son is what some call strong willed, impulsive, energetic and for a time he was also aggressive and mean. We worked with a behaviorist for years; one who said our son was one of his “hardest” cases.

I found that oddly comforting; I wasn’t crazy for thinking he was hard to parent. He needed constant monitoring, he had behavior programs that needed frequent tweaking, and we had to work closely with his school on a behavior plan included in his IEP.

During this time, our challenging son went into kidney failure, started dialysis, had multiple invasive procedures including a botched surgery (he was awake but couldn’t move) and finally a kidney transplant a month after his 8th birthday.

Transplant medication (I believe) and PTSD brought on  complete shut down and within a year he was clinically depressed, suicidal and lashing out at anything and everything but especially his sister who was facing her own battle with kidney failure.

She was vulnerable and convenient. 

Managing their relationship was a constant struggle and all of my energy went into that and keeping him alive. I have clear memories of checking on him at night and wondering if he’d awoken to somehow hang himself off the side of his loft bed.

As our daughter slept in the next room, I was relieved her needs weren’t as consuming; which is a horrible thought when you are talking about your daughter’s kidney transplant.

While we were trying to manage the needs of her physical demise we were balancing his ever-increasing mental health needs. He particularly liked her to think he was going to hit her or push her and when she reacted loudly, would have the honest answer of “I didn’t hurt her.”

She became so conditioned to his threats that she could barely operate in our family without thinking he was going to harm her. For over a year, they couldn’t be left alone while he was in therapy, on suicide watch and sinking deeper into despair.

Meanwhile, our daughter’s kidney transplant and local and national media attention just brought out more PTSD symptoms in him. 

Three months after her kidney transplant, we found ourselves at a psychiatric hospital with him where I am happy to say we found the right doctor – one that wanted him to function in the world the best way medication would allow. A doctor who wasn’t afraid to treat a child already on several kidney-saving drugs.

Finally, now, a year and a half later my kids are typical siblings. She doesn’t feel like he is going to kill her and he is annoyed by more typical things besides her just being present; typical sibling irritants.

I hate feeling like I didn’t support her as much as I could have through her kidney transplant because of his needs. I reasoned she was emotionally more stable and while I tried to avoid it, I knew at the time she was the sacrificial lamb of the family because something had to give.

I harbor a lot of guilt about that still and feel like I am trying to make it up to her with extra attention even 18 months after her surgery and recovery.

While I do try to be thankful for each day; I can’t help feel like another crisis is just around the corner because with disease, delays and mental health issues, that is just how it is for our family.

I hope because they share the same disease and some of the same struggles that one day they will find comfort through their shared experiences.

I will always hope their sibship grows.

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I am rarely speechless, but Julia's story leaves me so. To have children so profoundly challenged both physically and emotionally requires a mother of super-human proportions, and that Julia is.  

What they have been through as a family is nearly unimaginable to me, and yet, it is merely their story, and Julia is simply doing what she needs to do to keep her children alive and well.

Thank you, Julia, for sharing your family's amazing story with us.

So now that you have gotten a little of Julia here, you will want to go over to Kidneys and Eyes for more. She has been blogging for so long, there's just so much terrific stuff over there. 

Be sure to read this moving post about Julia's nightly fears, this one about her son's finally being able to feel his feelings, and this lovely one about her daughter's success at swinging.

Taking care of her family is a full time job, one that anyone could feel proud of doing, and stop at that. But amazingly, Julia does so much more. 

Not only does Julia thoughtfully advocate for all special needs children on her own blog, she has also started an organization and website specifically for this: Support for Special Needs.

This is a WONDERFUL community that you should absolutely join if you are a parent of a child(ren) with special needs. And if you are going to BlogHer11, you should join their SN at BlogHer group, so we can find each other there, amid the madness.

Finally, definitely go follow Julia on Twitter, where she is both wise and funny. You can also follow Support for Special Needs on Twitter, and "like" them on Facebook.  

Thank you, Julia, for being you and for all that you do for the Special Needs community.



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You Gotta Have Friends at Hopeful Parents Today

It's still the 10th of the month, for a little bit longer, and I got my Hopeful Parents post done today by the skin of my teeth.

I am talking about Jake and friends, or rather, his lack thereof, in my post: You Gotta Have Friends

And while I bemoan the fact that Jake still doesn't have a much desired close friend, I also find some things to celebrate, reasons for hope.

Once again, I'm keeping it short and sweet here, just popping in to throw to my post over there.

Because my two and a half day vacation, while restful? Over at 7 pm on Sunday eve. So I'm tired again. (Will I ever make enough deposits into the sleep bank to make up for the years of 4 hour nights?)

So go read me at Hopeful Parents, then come back tomorrow for more bologna.



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Busses, Trains, and Automobiles (plus Subway) on Mothers Day

Me and Mom, December 2010

Everybody I know is a mother or had a mother, so....

I hope you had a Happy Mothers Day, everyone!

My gift from my family for Mothers Day? A weekend away from them. Really. My first actual break in eight and a half years.

(Remember what happened the LAST time I tried to get away for a weekend?)

So I went to Bloggy Boot Camp in Boston (to you civilians, that's a women bloggers conference run by the wonderful SITS Girls) and had a great time, learned a ton.

I am still processing it all, and not ready to write about the conference content in detail here yet, but let's just say it was an enjoyable success both educationally and socially.

I met, ate good food, and drank good wine with many marvelous women there, some of whom I actually already knew IRL, some of whom I had known only in the e-space and was confirming they were actual corporeal beings, and some of whom were completely new connections.

At about 150 people (148 women and 2 men, I think) the conference was just the right size, not too overwhelming (though I also rather enjoyed the massive BlogHer conference last summer, too, it was just a different type of experience).

I left Friday morning, and Ethan sent me off in style, requesting and giving me a "Hug that will last three days!" as I bade him goodbye in the schoolyard at drop-off.

I drove up from New York with two lovely blog buddies (Holly, the Culture Mom and La Mere Joie) I had hung out with a little bit before, but happily got a chance to talk to and get to know in further depth on the five hour trip (four driving, one in a Connecticut diner -- we're all Jewish gals, we don't go too long without a feed and caffeination break).

I spent the first night at the conference hotel with a great roomie, another terrific NY area blogger I had been wanting more face time with, Anna from Random Handprints.

Then after a wonderful, chock filled conference -- including sneaking out to spend a WAY too short 45 minutes at the hotel bar with two sister Autism bloggers I had been dying to meet IRL who were not at the conference: Bostonian Alysia of Try Defying Gravity and the Spectrummy Mummy  (who had flown up from the DC area for the day) -- I was off to Lowell to spend the night with my cousin Annette and her lovely family.

I was catching an 8 PM train to Lowell. North Station is right under the Boston Garden, where the Celtics play. There was a Celtics game that night. At 8. And there had been a Red Sox game that afternoon.

I was given plenty of examples to help me remember why they call (a certain type of testosterone-and-beer fueled) Boston sports fans "Massholes."

My time in Lowell? Pure family-bonding delight.

And my twelve year old, about-to-be-Bat Mitzvahed niece? Made us a wonderful Mother's Day breakfast including pancakes and home-made strawberry coulis. She is thinking of starting her own foodie blog and I am greatly encouraging her. (Hear that, Greta? Do it!)

The interesting thing about the weekend? I spent a significant portion of it traveling. I took a cab to the commuter train to the 'burbs to meet my ride up. Then the mini-van drive to Boston.

From Boston it was a cab to the commuter-rail train to Lowell, where I was picked up by my cousin's husband and driven to their house. Then back to the Lowell train station (Twice! I missed my first train by 2 minutes, don't ask!) for a commuter-rail ride back to Boston.

And a cab ride from Boston's North Station to South Station where I caught my Peter Pan bus home with 2 minutes to spare. (Yes, bus, because $25 vs. $128 for Amtrak? No contest.) And then NYC subway back to the Upper West Side.

And I discovered: when traveling alone, without the kids, I am just Miss Laid-back-whatever-pants these days. Hours upon hours on the road, delays, traffic, detours, missed connections... ho, hum, no adrenaline necessary.

Because I can eat or read or nap or noodle around on my Droid to my heart's content with no one to bother me, thinking about no one but myself.

And THAT is a real vacation for me.

So thanks, family, for that amazing Mother's Day gift. And for all the kisses and hugs I received upon my return at bedtime Sunday night.

I hope you all had a lovely one, too!



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SNSS: Driving In the Wrong Direction

What can I possibly say about Adrienne, today's Special Needs Sibling Saturdays guest poster that would adequately communicate the depths of my feelings towards her?

Adrienne holds a very special place in my heart, so much so that I am actually a bit anxious about this intro, wanting to be very, very sure that I "get it right," introduce Adrienne to you properly, so that you will all love her as much as I do (silly me).

As you may have figured out, Adrienne is one of my early, important bloging connections, a bloggy mentor to me. I don't even remember what post brought me to her blog, No Points for Style, because once there, I started to read everything, backwards and forwards.

(I believe it might have been this amazing post about the stigma of mental illness: If the Diagnosis Was Cancer…)

Whatever post it was, it stopped me in my tracks, as did the rest of Adrienne's blog, her life story brimming full of challenges, a heavier load than any one person should have to carry in two lifetimes, let alone one.

Adrienne has four children, the youngest of whom has special needs. Until now, all my SNSS guest bloggers have had children on the autism spectrum, but Adrienne's son Carter's issues run both deeper and wider than that. His challenges are profound, and his care can be all consuming.

And yet, in spite of these heavy weights? Her words take flight, soar; dive deep, tunnel into your soul; expand in your mind, open up universes.

There is so much I want to tell you about Adrienne, I could just go on and on, but I really shouldn't do that because her own words are so beautiful and my yakking away is keeping you from them. And they're right here... so read...

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Driving In the Wrong Direction – by Adrienne Jones

I'd like to think that, if I'd known then what I know now, things would be different.

That, though, is an exercise in futility. Like my friend used to tell me, start putting wishes in one hand and shit in the other and see which hand fills up faster.

No doubt about it; regret is poison, but sometimes in the wee hours, I'm drawn to those dangerous thoughts and I spend hours second-guessing everything I've done in the past 8 and 1/2 years.

When Carter was born in 2002, my husband Brian and I already had three children. Jacob and Abbie, 8 and 6 at the time, are my kids from my first marriage. Spencer, who turned 5 the day before Carter was born, is my stepson.

Married just 2 years at the time, Brian and I and our kids had only just begun to feel a little like a family - to define all our new relationships and navigate the complex life of a step-family.

And then I gave birth to 8 pounds, 4 ounces of red-headed, caterwauling, wakeful baby. He was a crisis in footie pajamas. He cried so much (many, many hours at a time) and so vigorously (purple in the face and veins popping out all over his head and neck) that Brian and I rushed him to the ER at least 4 times during his first year because we were convinced that he must be in excruciating pain, perhaps even dying.

Our other kids? At first, I made dinner and we ate it while Carter screamed. Then I started preparing scrambled eggs or sandwiches. Eventually, I sent Brian out for a sack of burgers or gave everyone a bowl of cereal.

At first, they tried very hard to talk to me, pushing through Carter's wall of sound and shouting to be heard. Then, they stopped telling me anything but the essentials. Finally, they gave up altogether.

At first, I was relieved that the kids had their other parents' homes to go to, where they could get the adult attention they needed and enjoy a break from the chaos at our house. Then, they started to spend more and more time at their other homes, and finally, in 2009, Jacob and Abbie moved to their dad's house permanently.

What I didn't know in the beginning - what I couldn't have known - was that life with Carter was never going to calm down. Carter got older and gathered diagnoses like a snowball rolling downhill (an alphabet soup of developmental, social, and emotional issues), and my mental health frayed (and not just around the edges), and just when we would feel like we were at the very end of our endurance, things would suddenly get worse.

By the time I understood that we weren't dealing with a time-limited crisis but a lifetime of disability and that everything about our lives would have to change if we hoped to get Carter to adulthood, my older kids were gone. Their resentments, their feelings of abandonment, their pain, are all too deep for me to be able to repair our relationships in the short-term.

Our relationships won't be repaired until they decide that it's what they want.

Worse than my own pain is the rejection Carter has experienced. He adores, idolizes, and loves his siblings and just as Jacob and Abbie feel rejected and abandoned by me, Carter feels rejected and abandoned by them.

See how complicated things get?

I want to wrap this up with a pretty yellow bow, but I haven't got one. Raising a child with a serious mental illness is sort of like driving a car on the freeway going in the wrong direction - no matter how much I want to do things right, there's no time for anything except keeping everyone alive.

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Adrienne, thank you for this beautiful post. I remember when I first read your words about your truncated hopes for Carter, that for you just keeping him alive to become an adult would be a triumph, and how my heart wept for you. 

I knew your story here would be probably more intense, brutal, than many of the others told, but one I, and we all, needed to hear. 

Thank you from the bottom of my heart for opening yourself up once more and bringing your anguish to my table. My respect and admiration for you knows no bounds; I am truly grateful for the gift you have given us with your words.   

And, readers? The difficulty of living with, loving and caring for a child with a severe mental illness? Watching your child dissolve into a self- and other-injuring hallucinatory state? Hearing that your child is deeply disturbed, often psychotic, and will need to be on psychiatric medication for the rest of his life? Are things I can barely fathom. But all this Adrienne has faced, and written about, time and again, so movingly.

When I first discovered Adrienne I believe I spent a few nights up way too late, pouring over her archive, reading post after beautiful post.  There is so much there, so wide, so deep. I've linked to no small number of posts already, but let me just point out a few more, truly near and dear to my heart...

A wrenchingly intense post about how there are no Disposable People... about her deep love for her Beautiful Boy, Carter... about another Disposable Boy, and how society failed him... about her deep love of her oldest son and daughter and the Pain that Runs Through (her) Veins around losing them.

Besides her children, two other important topics for Adrienne are bullying and suicide, because she has greatly suffered from, and been shaped by the occurrence of both in her life. 

I know Adrienne isn't really fearless, that she's actually human sized. But her writing IS fearless, brave and honest and crack-open-your-chest-cavity-and-wrench-your-beating-heart-out real.  

And she also highly values that searing honesty in others, bestowing her "No Points for Style Bad Ass Blogger Award" to folks for bloggish bad-assery.  (In the spirit of full disclosure, I must admit I have been the recipient of said award for my post "O Is for Oxygen.")

But most of all, Adrienne is simply a flat-out amazing writer. She can be lyrical, touching. And on other days? Piss-your-pants funny. So go, read... ANYTHING there. It's all good. Better than good. Wonderful. 
 
And, if that weren't enough? Adrienne, like quite a number of other SNSS guests (and me, too) can also be found posting monthly at Hopeful Parents.
 
Finally, you should absolutely follow her on Twitter  and go "like" her on Facebook. Whew!

And did I mention? I love you, Adrienne. Thank you.


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