Hopeful about my fledgling

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

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

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

And if you're disappointed about not finding

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

Did you read all of these?:

When a Brother's Love Hurts

 by Gina of Special Happens

It’s Just Not Fair

 by Shell of Things I Can't Say

How Will They Know?

 by Caryn Haluska of Living with Logan

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

U is for Uncharted Territory

U is for…

Uncharted Territory

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

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

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

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

A little professor he most certainly is not.

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

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

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

My little corner of the neurodiverse universe.

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

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

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

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

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

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

U is for Unfinishe….

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

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

Some days I feel:

Uninspired

Unhinged

Unhappy

Unconnected

Unprepared


My real self just buried so far:

Underground


That the pressures so thoroughly:

Unending

Unbelievable

Unrelieved, nearly

Untenable


But I am also:

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

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

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

Underestimate his intelligence or

Understanding of what is going on around him.


And my life is also, always:

Unbelievably fulfilling

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

Uncharted territory I sail off into every day.

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

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


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Wordless Wednesday: 89 Years Young

My mother turned 89 last week. And we took her with us to visit a friend and her son, whose parents had a wonderful apartment right on the beach at Coney Island. It has been way too long since my nature-loving mother has seen the ocean. So we rectified that.

(OK, so I didn't get any pictures of the ocean, but there was a great view of it, out the window that's just off to the left. They had a balcony with glorious views, too.)

Also my friend's parents are of a similar age and background (albeit a bit younger) and her mother and mine got along like a house on fire, telling each other jokes with yiddish punchlines.

After lunch, we left the mothers behind to schmooze while the young folks hit up the rides.

Coney Island's famous Luna Park

Jakey loved their smiling man logo

all aboard The Tickler

Wheeeee!

Water coaster? Why not?

He's all smiles here, but this thing?

Nearly made Ethan toss his cookies.

Wheeee... urp.

Leaving Brooklyn for Manhattan at just the right early evening hour, my mother had many glorious views of the New York City sunset skyline, and her beloved Chrysler building as we drove home.  (Sorry, no pictures of that, folks, I was DRIVING, remember?)

Dinner was, of course, topped off with a piece of birthday cake, chocolate, of course. (Is there really any other kind?)

Happy Birthday, Mom. It was wonderful to see you smiling and enjoying yourself so much on your birthday. I know you must have been missing Dad, hopefully a little less acutely than last year.

Me & Mom, 89 years young

I hope I am lucky enough to age as beautifully and gracefully as you have.


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


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Childhood

I miss my childhood, sometimes, when adult life weighs heavily upon me, the constant needs of others, mostly my children, threatening to drag me under. 

When I am on hands and knees cleaning up a bathroom floor thoroughly splattered in one son’s vomit while my other son calls out to me complaining of the smell, begging me to come to him because he does not want to lie alone in the odoriferous dark.

I miss my childhood most when I am ill, yet still taking care of little people, instead of being tucked into bed myself, steam from the bowl of chicken soup my mother has carefully placed on the rickety metal folding table wafting up, salty pretzels and ginger ale rounding out the prescriptive meal for a nasty strep throat.

What I miss from my childhood are moments: running wild in the Daktari sandpits with my cousins; bouncing on my bed for hours with a friend while eating dot candy;  crashing through the waves with my father at Jones Beach on a hot summers day; sitting, mesmerized by the fireplace at Sacks Lodge on a frigid winter night; falling asleep in the back seat of a long drive home, my head in my mother’s lap, breathing in her Shalimar and the night air; my first real kiss.

And also the era.

My childhood is the 60’s. 

I turned 8 and 9, those seminal kid years, in 1968 and 1969; years which were also seminal to modern culture, when so much changed, happened, emerged, transformed: Woodstock, the assassinations (MLK, RFK), moon landing, Laugh-in, the Tet Offensive, Prague Spring, Andy Warhol, heart transplants, Charles Manson, the Chicago Seven, The Beatles, UNIX, bell bottoms, Sesame Street…

An era I have layers upon layers of thoughts and feelings about. My now adult understanding of it above all, but underneath?  That childhood glow surrounding times lived through, golden and suffused throughout, the images crystalline, sharp-edged while simultaneously encased in amber.

I miss my childhood, sometimes, but there is mostly so much I am glad to have broken free of, from my childhood.

Do not get me wrong, my childhood was not doom and gloom. There were certainly many joys; there were those thousand brilliant moments; there was laying in fields of wildflowers baking in the sun; lobster birthday dinners eaten with hedonistic abandon; I was - and knew I was - well loved by my gentle parents.

But what I do not miss is my childhood self: anxious, awkward, isolated, painfully shy, over-sensitive (SPD), easily overwhelmed, un-centered, uncomfortable in her own skin, cocooned in fantasy, brilliant but clueless.

That is not me now, has not been me for so long I must cast far to remember it.

I miss my childhood, sometimes.

But mostly I revel in my children’s childhood.

Creating the memories with them that they will suffuse with their own golden glow upon recollection; me the mother, whose Tea Rose they will breathe in with the night air as we travel the long way home from our adventures.


This post was inspired by a prompt at Write on Edge (formerly The Red Dress Club). This week's RemembeRED assignment was to write a post beginning with the phrase: ”I miss my childhood".

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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Blog Gems: Make Me Laugh

I blinked and it's time for the Blog Gems - Air Your Archives link-up again!

We now have less than a week to go before school starts here in New York City, and it is a good thing as the fighting and the whining is getting to me, and I am really starting to lose my sense of humor.

And, as that's the perfect lead in to today's theme, I'm going to change things around this week and move that part up here to the top.

So, because I REALLY need to laugh, this week's prompt is: Humor

Humor... funny stuff... you know, the posts that cause coffee spit-takes on computer screens, that make you cackle while you're writing them. Find your funniest and bring it on over here. 

And if you're a super serious blogger, and have never tagged a post "humor" in your bloggy life? Find one that's on the lighter side, that spotlights a sweet/funny moment in your life. Because I know you have at least one of those.

So, come on... link up a side-splitting (or gentle-smile-generating) gem from the past. Make me laugh!

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

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

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

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

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

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

To take part:

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

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

3. Enter your link.

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

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

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

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

Ready? Good. Go link up!




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SNSS: How Will They Know?

Today's SNSS guest? Has more kids than you do. OK, more than 99.9% of you do. She has seven. Which is why Caryn Haluska tweets as @ihave7monsters and refers to herself as the "Monster Momma" (& her home as "Monster House") on her blog Living with Logan.  

Caryn writes about life with Logan, her 3 year old son with issues (ASD, SPD, seizures & severe food allergies) and the rest of the gang, including Logan's twin who has some SPD issues of his own.

It's a busy, busy household. But one that is also clearly full of love and understanding, if rather shy on peace.

Although she gets some flack for it, she stands by referring to her kids as monsters. It's because she means it like Jim Henson's monsters: adorable and unique.

Her blog's tag line is: "What we've learned as a family because we have the HONOR of Logan being a part of it" and that beautiful sentiment says it all about where she is coming from, always.

So now it's time for me to stop talking and for you to read Caryn's lovely essay about her family, here:

@@@@@@@

How Will They Know? - by Caryn Haluska

I sit outside, contemplating the opportunity I've been given to contribute to this series. I think about what to write, while enjoying the cool of a late summer night in Southern Utah, breathing in the smell of flower pots dripping with pansies, alyssum and violets, and listening to the crickets sing.

The stars wink at me as I compose in my head what I will write about my beloved Monster House. This is my sanctuary~ a front porch step late at night, and the serenity nature offers.

It is, in fact, the only time I get to have absolute quiet and “me time.” And it never lasts more than ten minutes. So, I've had my ten minutes, and have come in to write. I'm hoping it comes out as well in print as it did in my head.

Life in a family with seven children, even if they were all NT children, would be hectic. Life in a family with seven children, one of whom is on the autism spectrum, has SPD (extreme non-seeker), seizures and crazy amounts of food allergies is somewhat more than hectic. Add in a couple of older sibs with learning difficulties, and a twin with SPD (total seeker), and things just get more interesting.

To prepare for this submission, I asked the monsters (1-4, as #5 was already asleep) to give me three words each about Logan, in no particular order, with no particular subject... just the first three words that popped into their heads when I said Logan's name. They didn't even have to be polite, as long as they were honest.

The Daddy liked this idea so much, he joined in as well, so I'm including his contribution, too.

#1
Cuddle Lion Logan

#2
sweet
honorable
cuddly

#3
cool
cuddly
soothing

#4
honorable
emotional
enjoyable

The Daddy
Attitude
Daredevil
Smart!!

Logan is his siblings' favorite teddy bear. They fight over holding him, and they cry when he's had enough and wants nothing more to do with them. He can make them laugh, and he knows just how to get them to come running with a well thought out shriek.

He can make them jealous, and he can make them proud, all within the same few minutes. Truly, Logan and #6 have brought all my children closer together.

The first thing everyone should know is: Logan and #6 are the babies. They just turned three at the beginning of the summer. The “older kids,” as we call #1-#5, range in age from 17 to 6, so I am extremely blessed to have a lot of help where Logan is concerned.

Logan's phenomenal progress in speech, motor skills, and other areas is largely in part to the efforts of his older brothers and sisters.  So much so, I have had to put my foot down upon occasion and remind them, “Logan is not a trained monkey! Let the child alone for a bit!”

Certainly, we are not without flaws. There have been occasions where one monster or another would become upset with the amount of time it took to arrange therapies, doctors' appointments, write for the blog, talk to other special needs parents, etc. We have had to squash all the monsters' hopes of having a pet because of Logan's allergies, much to the dismay of #3.

My #4 especially, has a rough time. She kept asking why Logan was the only one I wrote about, the only one with a picture in my blog header; at one point she asked why he was the only one I loved.

She is largely the reason for the blog makeover, and my shift to more posts about everyone. I am proud of ALL my monsters. I never want them to wonder.

As part of an agreement I have with the older monsters, I don't write a lot -if at all- about their learning difficulties. They are my #1 and #2, and they read my blog, along with their friends.

They are so proud of Logan. I think their struggles have helped them be more compassionate and understanding with him. My #2 and Logan have a special bond that defies explanation, and it has been so since the very first time they saw each other.

It's difficult for the older ones, I think. They are old enough to understand the definition of the “R word”, and have heard it said in reference to Logan by small minded people around town. But they just don't understand why the “R word” would apply to him. 

It is hard for them to think of Logan as having any kind of disability. They truly don't see it. At the Monster House, he's just Logan... not autism, not SPD, or anything else. He's their brother. And that's how we like it.

When I told them the other day at dinner that I had a meeting to help the school get ready for him, every last one of those monsters looked at me like I was nuts. And #1 asked the question for all of them: “Why? What's to get ready? He's coming to school.”

We agonize as parents. I question myself constantly, wondering if I'm being as accessible to all my monsters as I am to Logan and #6. The Daddy makes a concentrated effort to spend time with each child one on one after work, though he travels for business frequently and his time is not his own as often as he would like. It is things like this, I think, that causes siblings to lean a little more on each other, and grow closer.

I love watching the monsters together. There are fights, certainly. Far more than I am comfortable with. And there are times that the verbal warfare escalates to physical. We have raging teenage hormones and 11 year old drama queen syndrome.

There are twinnie meltdowns that are so intense I simply am not able to be available to anyone else while they are going on. There is jealousy, and resentment upon occasion. I hate having to say to one monster or another, “I'm sorry, baby. I just can't. I haven't slept. Logan and #6 had a very rough night.” It's all too frequent an occurrence, and I have a physical ache every time.

We incorporate family time with therapy. Most times it works. We have disco floors out of couch cushions. We have crazy fun cutting paper with scissors for no purpose other than, Logan likes it and it's great for fine motor and hand/eye coordination.

We go on walks together while the twinnies learn to ride tricycles. We play around with new “Logan safe” recipes. That rubber bread will go down in family history.

Our largest quality is the ability to adapt. I hope we never, ever lose that.

But I wonder, when it's all said and done... will my best have been good enough? Will they all know that they have special places in my mothers heart, that Logan and #6 are not the only ones there?

And how can I make sure of that? How will they know?

@@@@@@@

Reading this post, I just kept thinking about what a gift it is for Logan and his twin to have such an involved, loving family. And I want to hug Caryn and tell her: "Of course they know, it shines through in every word you write."

So now that you have read Caryn here, you are going to go follow her home, right? You will find her at her blog Living with Logan. Try this post, where Caryn shares why she lovingly calls them "Monsters", or this one about how hard it is to grocery shop for (and cook for and feed) a child with severe food allergies.

Want to see the magic she talks about between her big boy #2 and Logan? Look at this post here.  Want to laugh? Read this hysterical post about how #5 became notorious.

Also? You are definitely going to want to follow Caryn on Twitter, and go "like" her on her Facebook page.

Thank you so much, Caryn, for sharing your large, wonderful, funny, loving family with us here today.  


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I was Styled At BlogHer!

On the pink carpet at the Style Suite Party

I love pretty things, I like color and style and find fashion fun. I fish the the NY Times styles section out of the recycle pile my husband has tossed it into and read it.
 
But I'm an autism mom, and let's face it: being fashionable is far, far from the center of my life right now. It's not even on the map.

So imagine my thrill when, based on my post Shape Shifting, I was chosen to be one of the moms rescued by the Moms Fashion File and given a make-over at BlogHer in the Secret Style Suite, and then sent out to walk the pink carpet at their lovely Style Suite Party.

The day was amazing.  I arrived at my appointed time and entered a lovely suite on the top of the Hard Rock Hotel, complete with terraces affording a great view of San Diego.

After warm greetings from my lovely, gracious hosts -- Andrea of SavvySassyMoms, Nicole of Momtrends, and Alison of Sassy Moms in the City -- we took a "before" shot:

Look, it's "the green dress"!

Then I was whisked into the room of many clothes, and I was fully outfitted:

 
First I was given a set of comfortable underwear from BALI intimates (no I'm not showing you me in THAT!)

And then, after a few false starts, the loveliest party dress just slipped onto my body and was clearly the one for me: this black lace over purple satin number from Kiyonna. The purple is subtle peeking out through the lace, but there.

Not the best pic of me - but don't look at me - look at The DRESS! The SHOES!

Shoes. What woman doesn't love shoes? And they were giving me a pair. Yay!

But? They wanted us in heels. I don't wear high high heels. I have some foot issues and also have trouble walking in them. Yet I was persuaded to try on these puppies from Dr. Scholl's (yes, I know I'm horribly pigeon toed, have been all my life, and so is Ethan).

And? People? They were comfortable, shockingly comfortable. And with a really cushioned footbed and I could (and did) walk in them and did not fall on my face once all evening. (Yay, me!)

Then I was accessorized with some very interesting jewelry by Stella & Dot including a fabulous bracelet (loaner only on the jewelry, sob).

Finally, we picked out a great matching purple bag (in vinyl for good karma) by Namaste Handbags.

And then it was time to glam me up. A daunting task if ever there was one....

My first stop was with celebrity makeup artist Tia Dantzler.

And she was a lovely, lovely woman. We chatted about our lives while she made a more glamorous version of me appear like magic.

Then? Hair! Everyone always wants to blow out my curls, and make my hair straight. Nope. They're a big part of my signature style, close to my identity. I am a curly-haired woman.

But once I'd said no to the blow, the talented women of Detour Salon did the next best thing - they tamed my curls, made them big and wavy, softer and without any frizz - magic I tell ya. OK, magic and a lot of time spent with curling irons.

See the difference?

Half done. Look at those amazing big curls on the right!

I still felt like me, but definitely a more fabulous me.

The hair at its best, before the day softened the transformation

Everyone commented on how lovely my hair looked when I went back to the conference for the afternoon sessions.

Me with fabulous hair and BH roomies Alexandra & Shari

Finally, I got my nails done by Ginny Cardenas, the force behind Scotch Naturals. This is very special nail polish. It's made from non-toxic ingredients, and it's actually good for your nails, instead of drying them out -- can you imagine?!

This woman, who created the product line and runs the company, has an amazing story and there is a whole post in that (which I will tell at some future point). But lets just say she is another mother with a mission, and I loved the time I spent with her while she graciously adorned my fingers AND toes (it having been determined that my sparkly blue toenails just MUST be transformed into purple to go better with the dress).

Done!

And then, to top it off, I was sent away with over-the-top amazing gift bag from Lands End: one of their wonderful canvas totes filled to the brim, including EVERYTHING I needed to take a dip in the hotel pool on Sunday.

(No, I did NOT swim on Saturday and ruin the amazing hair & make-up job. I even chose to forgo the cocktail cruise I had been invited to, figuring wind + hair = disaster. See I'm not a total beauty/fashion idiot.)

And then came evening. It was a lovely party (which I nearly didn't make it to, due to a stalled freight train cutting off the conference hotel from the rest of town for about an hour, but that's a $15 cab ride and another story). Food! Wine! Ice Cream!

 

And then, for the first (and probably only) time in my life... I was in a fashion show!

And I did NOT trip and fall on my face. And those shoes were still comfortable at the end of the evening, when I was back at the conference hotel, dancing my ass off at BlogHer's traditional late night Cheese BurgHer party... Amazing!

Many thanks to the party's sponsors: Plum District, Ciao Bella Gelato (num num num), Johnson's, Stokke, Trop 50 and Windows Phone for a lovely, lovely evening.  And thanks again to the lovely ladies who styled and beautified me, and most of all to the hostesses with the mostesses: Andrea, Nicole, and Alison.

You made this often dowdy fifty year-old mom feel fashionable and fabulous, and I'll never forget that. 


P.S.  I used to wonder why bloggers would list all the goodies they had received at their exclusive "invite only" events, as it felt like bragging. But now I understand, because I genuinely want to thank all the people who helped make this day possible. As I am feeling very grateful, I wanted to name the companies involved, and spotlight their generosity. So if you hate hearing about other people's swag, I apologize and ask for your understanding: for me it's all about the thanking.

P.P.S.  Deep apologies for how long it's taken to get this post out. My life exploded when I got back from BlogHer (I'm just unpacking now!) and then Hurricane Irene threw me for a big loop as I had to scramble to pick my autistic son up from his camp early and get back before the storm hit full force, so there went my planned writing time. And did I mention I have ADD and I just plain suck at deadlines? Yup. Sorry.


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