What He Needs

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

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

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

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

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

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

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

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

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

Alone with her husband.

Unfathomable to me.

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

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

Jacob needs me just too damn much.

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

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

It WAS another life, and I was another me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He needs me.



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SOC Sunday: Wedding Bells

Sliding in here on the very edge of Sunday's tailfeathers. But wanted to post quick before I go collapse in my bed, then wake up early to prepare for the upcoming week's many challenges. So here goes....

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I was at a wedding today. a lovely, lovely wedding. I don't know the Bride and groom well, had met them at their engagement party last year. But the mother of the groom is a dear, dear friend of mine, so Danny & I made the 2 hour-each-way trek up the Hudson to Poughkeepsie. Yes I know some of you make that kind of trip daily as your commute. (thinking you must be insane)

We are New york city folk without a country home. to us a long drive is anything over 1/2 hour. Longer than that? Take the damn subway dude.

But anyway, usually that length trip better involve a sleepover for me, but today? totally worth it, to share my friend's joy.

As soon as I got home, I popped this in as my FB status:

Was at the loveliest wedding today. A friend's son. He has overcome many challenges to become the amazing young man he is today, and I am so happy that he has found love and an amazing partner in life. She has also faced challenges, and they understand and support each other completely. Also? Damn good looking couple. Danced my feet off, had a great time. Wishing them many happy years!

And I mean every word. This morning Dan & I were so not in the mood to go to a wedding. We're both stressed, too much to do, too little time.  We left a little late (but arrived EXACTLY on time, thank goodness I;d padded the drive time expectation!) and were stressy and snippy about that, tumbling into the car in dual nasty moods.

The drive up was not lovely... talking / worrying about money and autism and other fun fun subjects like that. But once we arrived? the beauty of the place (catering hall right on the Hudson river w/ sweeping views) and the sheer, clear & palpable happiness of the young couple and their wonderful supportive families just shifted our mood completely.

We didn't know many people there at all, (pretty much only the grooms parents) so I decided to treat it a bit like a date, talk with each other, hold hands, dance a lot together. and we did. and it was lovely. And we met some nice people too.

This morning I was thinking how I was going to write another whiny bitchin' & moanin' SOCS post today as I was feeling all bummed out about autism. tonight I;m feeling all warm and fuzzy (and no. I only had one glass of champagne for the toast, its not that) so moved was I by the force of these loving families we were celebrating with.

the groom is the middle of 3 brothers who love each other fiercely. It was awesome to be witnessing this. He loves puppets and animation, would love to be a puppeteer, is actively working towards that goal. and so his chosen song for his dance with his mother? The Muppet's "Rainbow Connection."

And they sang along, to each other, as they danced.  And I was really glad I was wearing waterproof mascara, because you bet I teared up at this.

It was all about who he truly was. In a family that "gets" him, marrying a woman who "gets" him. their honeymoon? They're going to Disney. Because they are playful, joyful people, and that's their idea of fun.

I was so happy to be a part of this... and now I'm going to sleep because I'm wiped out. My feet are killing me. I danced my ass off. G'night!

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Nothing to add really. Unless someone wants to come over and massage my aching feet... Husband, are you still awake?...

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 picture link and let's hear your 5 minutes of brilliance...

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SNSS: Special to the Fourth Power

Today's very special SNSS guest is a mom with a very special family. She is the stark. raving. mad. mommy (SRMM). She writes at her eponymous blog, whose tag line is: Losing my mind, one child at a time.

The SRMM has four children, and... they ALL have special needs. But, just to keep her on her toes, they are all different from each other. 

There are her twin daughters, oldest at 10, one with ADHD, one with severe anxiety. Then there is her brilliant but anxious seven year old daughter, and finally, her five year old son who is on the spectrum with Aspergers.

The SRMM herself? Has ADD, which she has recently begun to address, much to the improvement of her life.

And the most amazing thing is that this is a very, very funny blog. The SRMM sometimes rants about the injustices that any special needs parent experiences, but she also rants about everything else that freaks her out or pisses her off in a most entertaining way. 

She also enjoys and celebrates her children, revels in the wonderfulness of their specialness, even as she recognizes the challenges of their lives.

For her SNSS post, The SRMM has done a unique and brilliant thing: interviewed her four very bright children about their own situation, asked them to think about and share their thoughts on their siblings. Read this amazing post now, here:

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Special to the Fourth Power - by stark. raving. mad. mommy.

I have four kids, each with their own special needs.

Little Dude, who is five, was diagnosed with Asperger Syndrome about a year ago. 

The Peanut Butter Kid is seven. She has some anxiety issues, but her biggest special need is that she's crazy smart. We just put in a Gifted IEP for her. 

My twin daughters are ten. Cookie has severe anxiety. Besides weekly therapy, she's on three different prescription psychiatric medications. She had a 504 for her anxiety, but now those accommodations have been folded into a Gifted IEP. 

Her twin, the Pork Lo Maniac, has ADHD and some language processing issues. She also gets weekly therapy, and is on medication for both ADHD and anxiety. She currently has a 504 for her ADHD, but we're working toward an IEP to help her with the language processing.

Yeah ... I've got my hands full. But you know what? My kids do, too.

My husband and I do our darndest to give each of our kids as much individual attention as we can. But still, all these issues obviously impact each of our kids in different ways.

For my contribution to Special Needs Sibling Saturdays, I decided to interview each of my kids about how they see their siblings, and how they affect each other.


Little Dude, age 5.  Has: Asperger Syndrome, Sensory Processing Disorder.

What's hard about having a sister with ADHD?  She doesn't let me do much stuff.  It's stressful, and also sometimes I get really upset with her because she wrestles with me and her moves are too hard and I can't win.  What about when she's having a meltdown?  Yeah, that.  But that's all the problems.

What about Cookie's anxiety?  Is it hard for you when she's sad or stressed out?  I usually kind of tickle her.  Or do a silly face.

Can you tell me something great about each of your sisters?  Something great about Cookie is that she makes me happy.  The Pork Lo Maniac, a great thing about her is that she's Dad's padawan.  That way I have more people to wrestle with.  Something great about the Peanut Butter Kid is that she is great about doing crazy stuff.  Like laughing really hard and laughing into a pillow because it's so loud.  It doesn't even hurt my ears when I'm right next to her and she laughs.

What do you think it's like for your sisters when you get really stressed and have a meltdown?  I think they get upset, because they can't fix the problem.

The Peanut Butter Kid, age 7.  Has: anxiety, Gifted IEP.

What's hard about having a sister with ADHD (and language processing issues)?  When she doesn't get what I'm saying, when I'm being sarcastic.  It's hard to get her to understand me, about each thing I say.  If she's too busy and she can't hear me, somtimes I start to freak out a little, because it's really hard to get her to focus on what I'm saying.

What's fun or awesome about having a sister with ADHD?  It's awesome that she has ADHD, because if she didn't, she wouldn't be as much fun.  She makes up funny jokes, and sometimes they don't even make any sense, but they're funny.  She talks about weird stuff with me, like talking about poop, and then we laugh so hard that Cookie calls us "broken."

What's hard about having a sister with anxiety?  When she's stressed with me because I did something wrong, I try to make her feel better, because then I feel guilty and it turns into this whole thing.  If it's just about homework, when she's done I try to leave her alone, or cheer her up.

What's great about her anxiety?  She understands me, because she gets stressed like me.  She's not perfect, and I like that, because she's my sister, and I don't want to feel so different.

What's hard about having a little brother on the spectrum?  When he melts down and freaks out, it's hard to get him to understand, and sometimes he doesn't pay attention because he's so focused on something else.

What's great about his Asperger? He loves Star Wars and he loves me very much.  He's so fun.

What do you think it's like for your siblings when you're feeling anxious?  I think it's hard for them to understand me, and to feel the way I do.  It think it's hard for them.  Sometimes they try to leave me alone.  I guess it's stressful for them.

What about when you're working on school stuff that your older sisters are working on, like multiplication?  Sometimes when I accidentally say stuff out loud, about me working on multiplication or something, that can hurt someone's feelings. It can be a little offensive.  I try not to talk about that.  I can talk about it with you and Daddy instead.

The Pork Lo Maniac, age 10.  Has: ADHD, anxiety, language processing issues.

What's hard about having a little brother with Asperger Syndrome?  It's hard to ask him a question like, "can you please lower your voice?" or "can you please stop that?" without him getting upset.  When he has a meltdown, he might scream at me, and sometimes it'll be because of one little thing.  When I want him to stop doing something, I know that he'll get upset if I ask him, so then I have to just listen to his really loud voice.

What's awesome about his Asperger Syndrome?  Sometimes, how he needs to express his feelings at the end of the day is wrestling, which I love to do.  Sometimes I just need to wrestle.  It's perfect when we can just both wrestle together.

Both of your sisters have anxiety issues. What's hard about their anxiety for you?   Sometimes when we're having a conversation, and I don't understand what one of them is saying, or I don't really know what they're talking about, or I take it literally, then they do this (shows shaking arms), and I can't really help it that I don't understand.

Also, since Cookie has anxiety, she needs that medicine Clonidine, so at night it makes her think it's later than it really is.  She gets more tired, and keeps asking me if we can turn off the lights, and it's really not that late.  I just want to keep reading.  

You have some anxiety too. What's different about your anxiety than theirs?  I get anxious about mostly about getting stuff done.  They start worrying that it's late, or we're going to be late, and I'll probably never worry as much as they do.  I guess sometimes when I can't hear somebody or I don't know what they're saying, and they keep having to repeat it over and over again, and I still can't understand them, it's just too hard, and I don't know what to do.

I don't think they have that anxiety.  But they might.  When I keep asking them a question, and they don't know what I'm saying, because I've already had the conversation in my head and I just use pronouns and they don't know, that might make them feel anxious.  I see them flapping their hands because they're frustrated.  And then that makes me feel bad because I can't help that.

Do you think them having anxiety makes it easier for them to understand what you're going through?  No.  They just can't understand.

Is there anything great about the way they are, or their anxiety?  I guess it is good that even when it isn't that late, and Cookie says she thinks it's late and we should turn off the lights, but I just started reading a minute ago, then that reminds me that at some point I need to turn off the light.

Is it hard when the Peanut Butter Kid is doing really advanced schoolwork?  Yeah, sometimes that bothers me.  I know I'm smart, but I'm the only one who hasn't been in the gifted program.  Sometimes it upsets me when everyone else is so smart, and I'm smart, but I'm the one who struggles with the most stuff in school.  And they're so smart, I can't understand what their stuff even is in school.  It seems easier for them.

I'm the one who probably won't be in the gifted program.  Sometimes I feel like people aren't as proud of me.  In the spelling bee, I was the fourth one out.  Everyone was so proud of [our friend who won].  At the spelling bee, they couldn't see how good of a speller I really am.  I think you and Daddy are proud of me, but at school, I don't feel like they're proud of me, of how hard I work.

Tell me something great about your sisters.  Cookie's really crafty, and she has really good ideas that are so good it's hard not to steal that idea.  It's fun playing with The Peanut Butter Kid, just her and me.  I think she's really good at understanding me when we play one-on-one.

What do you think is hard for your siblings about your ADHD, or your language processing issues?  It's probably hard when I have a conversation in my head, and then I just say "it" or something like that, and they have no idea what I'm saying.  I guess it's stressful for them when I get really frustrated.

It's probably hard for anybody when they're asking me a question, and I can't understand them, or when they can't understand me.  I know that my ADHD is fun sometimes, because the PBK said one time that she's glad I have ADHD, because if I didn't, it wouldn't be as fun for her, but I don't really understand that.
 
Cookie, age 10.  Has: severe anxiety, Gifted IEP.

Did you know something was different about Little Dude before we told you?  Yeah. A little before that, there was something a little off. Something just didn't seem like normal. He was different from other kids his age. When we would go to friends' houses, he didn't play with other kids as much as he played with Legos and stuff.

What's hard about having a little brother with Asperger Syndrome?  Sometimes he's very stubborn.  And he gets so obsessed with one thing, it's hard for me to want to play with him. Sometimes I want a break, and he doesn't really seem to understand that. At the dinner table, things can get a little weird, and I kind of get tired of him talking about butt cheeks at the table. It's not very pleasant.

What's awesome about having a little brother with Asperger Syndrome? Sometimes he can kind of help us with his homework. When he was obsessed with multiplication, he would sing, "six times eight is forty-eight." Sometimes it's fun playing with him, because he has awesome ideas about what to pretend. When we're playing Lego Star Wars or Lego Indiana Jones, he knows exactly what to do and where everything is.  On Batman, he can even remember the bad guys' actual names.

What's hard about having a twin sister with ADHD and language processing issues?  Sometimes, she doesn't really understand, somehow. She takes so many things literally. Sometimes it's hard to talk to her at the end of the day, because by the end of the day, she's mumbling, and she gets mad. She'll say, "I said, ..." Every little thing seems to be so big to her.

Do you know why she's different at the end of the day? Probably because she had a tough day dealing with her ADHD. And I know her Adderall wears off by then.

Is there anything awesome or fun about her ADHD? Despite how she doesn't get sarcasm, she has a really good sense of humor. She's funny sometimes, but sometimes she doesn't get how she's being funny. Other times, she does get it. But sometimes when she's humming little tunes and doesn't hear us talking, it's kind of funny. Also, she can find pretty much anything in the house, because of her memory.

If she's being really ADHD-ish, how does it affect you? It really depends on how I'm feeling, and what she's doing. Sometimes it's stressful. Sometimes it's hilarious.

Do you feel like you get left out, like Daddy and I spend more time or energy on Little Dude or the Pork Lo Maniac? Sometimes. Because sometimes I'm trying to talk, and somebody has a freak-out in the middle of the conversation. It's not very fair to me. And the Pork Lo Maniac always needs things repeated, so it's like I've had the whole conversation over and over.

How do you think it's hard for your siblings to have a sister with anxiety? I never really thought about their side, of what they deal with too much, in terms of me. At the end of the day, if I've forgot my homework or something, I guess it must be hard for them, to hear me getting so upset. Kind of like how it's hard for me to hear them get so upset.

I know it's especially hard for the Pork Lo Maniac. One time, the PBK offered to give me her slinky because mine was all bent and I didn't like it any more, and the Pork Lo Maniac was like, "how come you always get what you want?" It made me feel bad.

I know Little Dude doesn't like waiting for an hour when I'm in therapy. But I'm pretty sure my sisters are fine because they have toys in the waiting room. But I don't know, because I'm not there. I'm in therapy.

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I'm grateful to Varda for asking me to contribute to the Special Needs Sibling Saturdays series.  Interviewing the kids, and then reading the responses as a family, really gave us the opportunity to focus on how we function as a unit. 

Clearly, the kids hadn't previously given much thought to how their quirks affect other people.  Self-awareness is a long, hard road, and I'm glad we could start them on that path in a gentle, supportive way.

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I love how articulate and thoughtful all of her children have been. It was a brilliant idea to interview them, and that SRM family used it as a source of connection and communication, to help set the kids on a path of self-awareness? Beautiful.

The fact that, in spite of their very differing needs, it is clear that this family still functions as a unit is a testament to what an amazing parent the SRM Mommy is. Even if she has written a post confessing that she sucks? Don't believe it.

We all get overwhelmed, no special needs parent (let alone one x 4) can do it all. She is way wonderful, trust me. Any mom who LOVES summer break? Wonderful. And that she faces all these challenges with her kids yet clearly has kept her sense of humor? Amazing.

So now that you have read this lovely post here? You will surely want to go read more at stark. raving. mad. mommy. Her absolute honesty, discussing her own issues, openly talking about medication and her kids, has been inspiring and helpful to so many.

Besides all the wonderful posts I've linked to in the introduction and above? Don't miss this fabulous one, about how to make special needs "cool" (by changing an acronym to "Jedi"), or this funny one about the trials of doing math homework with her twin daughters, or try this sweet and funny one, about the advantages/disadvantages of autism.

Or, for something completely different (the funny stuff that has nothing to do with special needs) read the post that put SRMM "on the map" for a lot of people: a hysterical treatise on those highly annoying childrens cartoons: Dear Dora, We Need To Talk.

Finally? You should follow her on Twitter, and go "like" her on her Facebook page, where she is just as outspoken and delightfully irreverent as she is on her blog.


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.

One Picture

NOTE: This is FICTION folks. Really. Linking up with The Red Dress Club today.

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This morning I am practicing my coma.

Pretending I don't hear the soft sing-song calls of "Mooooommeeeeee" wafting in from out there somewhere. In stereo.

I don't hear the tinkles and toilet flush. The pitter-pat of four little feet.

It's June 24th. Let me sleep.

I do, however, feel the knee in the left ovary and the little agile fingers prying my eyelids open.

"Good morning, darlings! What, awake so soon? Let's go make us some breakfast!"

Two almost three year-olds? Love to "help" in the kitchen, make making breakfast a whole morning-long activity. Thank goodness. Because I am out of fresh ideas.

The pancake batter drizzled all over the floor? Why do you think we have a dog?

Did Robert fill the plastic pool before he left for work, set it in the sun?

Yes! (No divorce today.)

Hours of splash the brother / dunk the sister have done their job.

After lunch? They go down for a nap. Hard.

I honestly don't know what I would have done today, otherwise. Chained them up in their room? Maybe.

No need.

I slip away from sleeping children, back downstairs, then down again.

A room of my own. Merely a screened off corner of the basement. No matter. Mine.

And in my desk, middle drawer, back, under, no further under... there it is.

I pull out the envelope. Plain, manila tan. One corner worried at, a bit torn.

Inside: one picture. The only one I have of her.

18 weeks.

Blurry, the way ultrasound pictures are supposed to be.

But still, the features are clearly there: Elli's nose, Josh's pointy chin.

The big sister they will never know.

Once the twins came along, Robert stopped mourning, moved on. Full of love for the living.

But I can't. My heart is not built that way.

So I contain it, crack open on specific occasions. An hour here, a day there.

Like today, June 24th.

Her (would have been) due date.

I slide the photo back in, tuck it away. I don't really need to look at it anyway, so seared into my soul.

Back upstairs, upstairs again.

Sitting, waiting for my children's eyes to flutter open, for them to tumble, sleepy, out of newly minted toddler beds.

My arms will fill with the sweet weight of them, as my heart’s doors swing open and shut, open and shut. And open.

Overflowing.

Always.

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This post was written for The Red Dress Club's Red Writing Hood prompt: "Flash Fiction can be fun and a real challenge. Write a 300 word piece using the following word for inspiration: LIFE."

And? As usual, I've gone a little over the limit - pretend it said 400, OK? Problems with authority, following the rules? Me? Noooooo. (And I wonder where Ethan gets that from, sheesh!)

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J is for Jacob

If E was for Ethan?

Then J must surely be for Jacob.

A pair, these two.

Twins.

My bookends.

And me, most assuredly sandwiched into the middle between them.

(Squashed.)

But two more unalike bookends have ne'er been seen.

There is light and dark.

There is slender and solid.

There is early riser and night-owl.

There is picky eater and lover of all things food.

There is my blue & green loving boy and my yellow/red/orange choosing son.

There is the seeker of the next new thing and the one attached to the comfortable and familiar.

There is the greatest divide... Autism and Not-autism.

Jacob is my Autism. His autism.

He has taught me so much.

I am a better mother because of him.

More patient.

More understanding.

Kinder.

Gentler.

Because he needs me to be thus.

I have to listen, so carefully, to hear the message under the words, because so often Jake's words only hint at the true nature of his thoughts, the mere cresting of a deepening wave.

And then, too, I need to pull the right words out of him, help to expand, make explicit, because I will not always be his main listener and I want, nay, *need* him to be understood by the world at large.

Jacob is so easy to love but so hard to be with sometimes.

Exhausting.

Always talking, always louder than need be. Often asking the same question over and over. But how immeasurably better than the silence that he once overcame.

Jake does not walk down the sidewalk most days. Rather, he skips. For why walk when you can skip, just for the sheer joy of it?

Actually I think of that as one of Jacob's 5 basic rules for living:

1.  Why walk when you can skip?

2.  When you hear music? Dance!

3.  Go to every vaguely-appropriate-for-kids movie. At least twice. The first time preferably on opening weekend. Always stay until the end of the last credit. Dance to the music (of course, see rule #2, above).

4.  Hands are for holding.

5.  Why just give one kiss when three are so much nicer?  (And up the arm like Gomez to Morticia is always preferable.)

Sometimes I think he is the happiest child in New York City.

Except when he is the saddest.

Jacob as a baby?

One word: charming.

He was a flirt.

He loved the shopgirls in the stores on Broadway, where we would pop in and out of, to relive the tedium of those early baby days.

He always picked out the cutest, sweetest, friendliest girl to bat his long eyelashes at and flash his killer smile. If I ever showed up without him, his favorites would complain: "Where's my boyfriend today?"

My sister in law Bern once described year-old Jacob as "Always ready to be delighted by the world."

And she was right.

Here he is, then:

Jacob, the 3 month old charmer

And now:

Jacob, still charming at 8 years old

J is for Jacob...

Joyful, jouncing, juicy, jovial, jargoning, Jedi-hearted, jigsaw puzzleish, jack o' lantern-loving, and full of boundless joie de vivre.

All this, and more. So much more than the sum of his parts. And always his unique self.

My son, Jacob.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And of course you guessed that "J" was one of my other favorite letters.

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


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Half-Time

Yesterday was Jake's last day of school.

A half-day.

After a week of "half" days.

Really?

"Half?"

Because they feel more like a quarter to me.

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

And if I'm lucky?

I've had a chance to shower.

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

Ethan and the other Tasmanian Devil

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

Jake is a "Math Wizard"

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

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

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

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

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

And now? Starts Jake's week off.

Vacation. (For Him.)

No school.

No camp.

Camp Mom.

All Mom, all the time.

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

It's not you, it's me.

Really.

Me and Jake, on break together.

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

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

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

(Just kidding, Honey, just kidding!)

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

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

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

Who knew plumbing could be this much fun?

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

And after I put Jake on his bus?

The silence will be deafening.

I will revel in it.

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

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


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Fatherless Fathers Day, Year 2

Dad & Me, H.S. Graduation, 1977

We circle 'round to our losses, over and over again. Each year it gets a little better. There's a little more distance, a little more getting used to the rhythms of "without."

Dad & Me, 1997

But we never get over, we just get through.

Today is my second Fathers Day without a father.

Dad & Me, Riverside Park, 1997

As the day was approaching, and I was wondering how I would feel, I was trying to measure, to gauge how less sharp the loss might feel, the dulling of the ache as time wears smooth the memories of those last, dreadful months.

Dad & Me, 1991

I know the pain is less keen these days; there is more dull ache to it, less sharp jab. But I also knew I would be thinking of him. How could I not?

And indeed thoughts of my father have come and gone today, where last year they were a constant companion. I have been trying not to worry at the hollow space too much, like a tongue always seeking that missing tooth.

On Vacation with my Dad, Mexico, 1978

I kept busy, was thoroughly distracted by my children, taking a drive with a friend and her brood out to the Liberty Science Center in New Jersey.

Losing ourselves in giant bubbles and sneezing blue faces. Exhibits that taught us to speak a few words in another language and ones that recorded our voices and played them back REALLY LOUD (can't you just see Jake's delight at THAT?)

It was a good day.

But still? I miss my Dad.

Me & Dad, December, 1969

I'm sad that my kids have no Grandfather.

Dad & Jake, 2005

He really loved my boys, was touchingly involved with them until that last year, when he was slowly slip-sliding away from it all.

Dad & family, 2007

He took a special interest in Jacob, read up about autism, wanted to do all he could to help him.

Mom, Me & Dad at E & J's Birthday Party, 2009

The Dad from my childhood, the Dad from my early adulthood, the Dad from these last, waning years when our roles reversed and I had become his caretaker.

These all coexist, living on inside me now.

He told me so many of his stories. (I feel so lucky to have truly known my father.). And so the man my father was before he was my father also lives on in me, too.

And I will share those stories with my children (and with you, my readers) so he will continue to live on, even when I, too, am gone.

Not how he preferred to achieve immortality (like Woody Allen he was hoping to actually live forever) but it beats the alternative, fading away into the dust.

Dad, Me & Mom, 1962

Happy Fathers Day, Daddy Jim.

My father, 1961 (photo by Bruce Steinhardt)

I will remember you, love you, always.


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SNSS: Big Daddy in the House

Tomorrow is Fathers Day. And so, who better to be my SNSS guest today than the awesome Big Daddy, who blogs at Big Daddy Autism? No one, so here he is!

Big Daddy has a son, Griffin, on the autism spectrum and a daughter, Lil Sis, who is not. Griffin is loud, repetitive, loving, funny, charming, obsessive and anxious -- in other words he sounds a lot like an older version of my Jake.

In contrast to many other SNSS guests who have young children, Big Daddy's kids are all into the double digits, lending a whole other element to their story. I look to his stories as possible shadows of our future.

And, amazingly enough? In spite of all his family's challenges, Big Daddy Autism is a humor blog. A very, very funny humor blog.

Big Daddy believes that by telling funny and off-beat stories from his life, he shows that raising a kid with special needs is not all doom and gloom. As he shares his tales (and cartoons!) from the lighter side of raising a child with autism, he is actually being sneaky: using humor to be all inspirational and such.

So read now, and be inspired:

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Sister Knows Best - by Big Daddy

I can think of nothing quite as boring as a parent gushing on and on about how wonderfully perfect their NT (neuro-typical) child is.  So, I will not spend too much time telling you what we think of Griffin's little sister.  Suffice it to say, in our eyes, she is anything but “typical” and, she is the most beautiful and incredible little girl in the universe.

I know I’m gushing a bit.  However, in the context of how she affects Griffin’s life, I feel a few words singing her praises would be appropriate.

From her relatively uneventful labor and delivery, through every developmental milestone, and even to our hopes and dreams for the future, she has shown us how it is “supposed” to be.  With her, we get the pleasures of raising a “typical” kid.  But we also get the bonus of perspective.

Thanks to our experiences with Griffin, we never take her accomplishments, no matter how insignificant they may seem, for granted.  Just as without nighttime the day would not seem as bright, raising a disabled child has made us appreciate our non-disabled kid even more.

We first learned Lil Sis was on her way into the world around the time Griffin was first definitively diagnosed as autistic.  This caused quite a bit of concern.  We were told that autism may be genetic and the chance of our next child being autistic was greatly increased over the general population.

We considered genetic testing, but ultimately decided against it since it didn’t really make a difference.  We were going to have her either way.  Besides, when we were pregnant with Griffin, in light of Mrs. Big Daddy’s youth and good health, we were told that the chances of having a child with a disability or birth defect were less than our chances of having a puppy.  So much for predictions

Lil Sis’s impact on Griffin has been profound and we believe much of his emotional growth and development can be attributed to her.  She subscribes to the family philosophy of giving him no slack, teasing him, and forcing him into our world.

When she is bored and in need of a playmate, she refuses to let Griffin hole himself up in his room.  She makes him participate in regular kid activities as much as he is capable and even includes him when she is playing with her other friends.

Early on, she was our main translator.  She understood Griffin’s garbled and broken speech better than any teacher or therapist.  Whenever we couldn’t understand Griffin, she was there like a UN Interpreter.  Now, we just make him spell the words we can’t understand.

Sometimes, though, Lil Sis still understands him when no one else can.  She also has the uncanny ability to sense if there is something bothering Griffin, even if he has not (or cannot) verbalized it.  In a way, at times, she knows Griffin better than he knows himself.

Lil Sis is protective of Griffin.  Occasionally we worry she is overly concerned with his well being.  We want her to be a carefree kid and leave the worrying about Griffin to us grown-ups.  A good example of how she goes above and beyond to safeguard him would be the first time she ever got in trouble at school.

Griffin was already in first grade when Lil Sis started private preschool.  When she began Kindergarten it was the first time they were in the same school.  Although he spent most of his time in a special cluster, she occasionally saw Griffin during the day.

The first time she was in attendance for a fire drill must have been a shock for her.  She, like all the other kids, witnessed Griffin’s routine fire drill meltdown.  Later that day, we received a call from the principal (who we knew well by this point) telling us that Lil Sis had cut physical education.

We were shocked.  Even I waited until around sixth grade to start skipping out of gym class.  Could she have inherited my complete inability to do anything remotely athletic, and total disdain for physical education teachers?  No way.  She had tons of energy and enjoyed anything that involved running, bouncing, and jumping.

Further, this type of rebellious behavior was entirely out of character for her.  She was well behaved and respectful of authority.  Were we totally in the dark as to our daughter’s true personality?  As we pieced together the rest of the story, it all made perfect sense.

Lil Sis actually loves PE.  It’s watching Griffin crying that she dislikes.  It turns out that gym class immediately followed the aforementioned fire drill.  A few minutes into the special, Lil Sis told Coach Smith that she had to go to the bathroom.  Instead of using the restroom directly outside the gymnasium, she snuck down the hall to Griffin’s class room and convinced the special education teacher to let her use the facilities in there.

Her detour wasn’t a quirky toilet preference, or a desire to get out of dodge ball (although I wouldn’t blame her for either), rather, she merely wanted to make sure her brother had recovered from the fire drill.

I don’t think, in the history of public education, has a parent been so proud of his daughter for lying to her teachers and cutting class.  It was difficult to admonish her for this transgression without hugging her so tight her head would pop.

There was a time when Lil Sis would end friendships with kids who did not respect Griffin or did not treat him well.  If they were not nice to her brother – they were gone.  Simple as that.  Now all her friends, at a minimum, tolerate him and some of them even get a kick out of him like we do.

Not long ago Lil Sis came to me while I was sitting at my desk and asked for a roll of tape.  Since Griffin does not have the dexterity to use tape and Lil Sis has a tendency to go heavy on the sticky stuff, I am always on heightened alert when a project calls for it.  Not wanting to spend an hour pulling tape off our Persian cat and letting my curiosity get the best of me, I snuck a peek to find out what my progeny were up to.

In Griffin’s room I could see that she had transformed his closet into an imaginary elevator in which they were pretending to ride from floor to floor.  That is what she chose to spend her afternoon doing.  Can you blame me for gushing?

Although we tell her he is not her responsibility, she still looks out for Griffin, and has a loyal band of friends who do likewise.  Our concern is that she will someday feel weighed down by him.  Especially in adulthood when we are no longer around.

Other than constantly telling her that it isn’t her job to always make sure he is okay, and by taking the steps necessary to ensure he will never be a financial burden on her, there isn’t much we can do to stop her from wanting to take care of him.

It’s who she is.  We wouldn’t change a thing about her.  She is the awesomenest!

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I don’t know about the rest of you, but I am so deeply moved and, yes, inspired by the relationship between Griffin and his Lil Sis.  I can only hope that some day Ethan has a fraction of the love and compassion that Lil Sis shows toward her autistic big brother. 

Griffin is lucky, indeed, to have her. And the most beautiful thing? She feels lucky to have him.

Now that you have been charmed by Big Daddy here? You simply must go visit him back at HIS house, Big Daddy Autism.

You’ll want to read this post, a touching letter addressed to Lil Sis, or this one about Griffin's love of elevators. Try this utterly hysterical post about what Big Daddy does on schedule, or this incredibly moving one, about a moment of "normalcy" from Griffin. 

I could easily link a hundred great posts here (Big Daddy is prolific, too) but I'll stop now. So just go over and start reading through his archives, there are gems on every page. 

Another place to find Big Daddy is on his BlogTalk Radio show, Autism WTF, which he co-hosts with his partner, the wonderful Autism Army Mom. Looking for a funny and irreverent conversation about autism and the special needs parenting experience? Here it is! Go, listen, laugh.

Also? Breaking news: Big Daddy has written a book of his collected wisdom, just out this spring, called, naturally, "Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism."

You can (and should) buy it, here.

Besides his blog, radio show and book, Big Daddy can be found dispensing his wit on Twitter, and on his Facebook page, where you should go and show him a lot of “like.”

Thank you, Big Daddy, for coming to inspire us with your love and humor. Happy Fathers Day, dude!


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Wordless Wednesday: Basketball Boys

 

If you're a regular reader of my blog, you will know that saying "My boys don't always get along." is an understatement on par of calling the sun a little bigger than a basketball.

There may be some basic personality differences and generic sibling rivalry going on, but really?  It's mostly about the autism.

One thing they actually agree upon (besides the fact the Sponge Bob is hysterically funny) is a love of all things basketball.

Today was a perfect June day. So when Jake and I picked Ethan up from his afterschool class at 5:45 (basketball, of course) there was still plenty of daylight. As we walked down the sidewalk and the boys were squabbling over possession of our one basketball I had a brilliant brainstorm: buy a 2nd basketball!

Conveniently, there's a sporting goods store a block from Ethan's school, and a decent-for-kids quality ball on 1/2 price sale - score!  The guy behind the counter even pumped up our old ball along with the new one. (Thanks, excellent Modell's cashier!)

And then, when you've just gotten a new basketball, you've got to go try it out, don't you? So back to the schoolyard we went.

Normally, I carry my good camera with me all the time, but today it was home, the battery charging in anticipation of Jake's special end-of-year school event tomorrow. So I whipped out my cell phone and shot away. Not, however, the best tool for fast moving action shots.

Between the 3-second delay between button push and shot, the long wait for upload onto the chip, the late afternoon brilliant sunlight and deep shadows, I never really got the fabulous "Basketball!" shot I wanted.

But the most important thing, that they were getting along, enjoying shooting hoops together? Happened, whether I captured it or not. So these will have to do:

Jacob, airborne

Ethan sinks one.

My boys, they love basketball.


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9 Years Ago I was Rockin' a BIG Bump

Me, April 2002, 5 months pregnant. Really.

I got my bump early, what with carrying twins and all, moving from the "Is she preggo or just really fond of beer?" to the "Oh, yeah she's preggo!" stage in rapid succession.

It helped get me sympathy as I puked all over Los Angeles and the Sundance Film Festival in Park City, Utah (almost in James Caan's lap) on my last business trips before I was grounded by my obstetrician.

At Sundance, the actress Julie Benz, who played the pregnant vampire Darla in the (Buffy the Vampire Slayer spin-off) Angel TV series rubbed my bump "for luck." That was pretty awesome.

In Los Angeles?  The boys were really growing. I needed fuel, and plenty of it. Intensely. And impatiently. (I *might* have eaten the untouched cornbread from a basket at the just vacated table next to ours when the service was glacially slow in that LA restaurant way. Mmmmm that cornbread was good.)

It was NOT a good idea to get between me and my plate of risotto on that trip. (You would likely have found teeth marks on your arm.)

This is me in Los Angeles in February, only 3 & 1/2 months pregnant, mind you:

On the beach at sunset. Maybe Malibu. I don't remember. It was almost dinnertime. I was getting hungry.

My husband and I took our last trip alone together in April, a weekend getaway at Mohonk, a Catskill mountain resort just 90 minutes from the city (we had been admonished not to go any further).

April 2002, 5 months Pregnant, 4 months to go!

Right about now? In early June, nine years ago? I was losing my mind trying to get our kitchen/bathroom/baby's room renovation completed before the babies arrived.

Because twins without a kitchen? Really bad idea. Twins without a working bathroom (our apartment only has one)? Even worse. And a 3-week job had turned into 2 months and counting, of course.

I needn't have worried.

Already big as a house in early June, I couldn't imagine going full term, to that date I had awoken from a dream in January and spoken out loud with such certainty I'd marked it on the calendar: "July 29th -- I'm having the babies on July 29th!"

But there that date is, on their birth certificates.

39 weeks.

Nearly 14 pounds of babies.

Which looks like this:

Me, July 28th, 2002, my last night pregnant

And then?  These:

Ethan & Jake, 1 day old

Worth every stretch mark, and then some.

This was written for the Rockin’ the Bump Link-up at Shell’s blog: Things I Can’t Say. Come join in! And I dare any of you to show me one bigger!


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Blog Gems - Air Your Archives #17 visiting HERE

Today I am happy to be helping out a friend and hosting the fortnightly (LOVE that word!) Blog Gems - Air Your Archives link-up.

This was created by the wonderful Jen, my lovely friend from Ireland who blogs at The King and Eye. Jen, a sister Autism Mom, is taking a break from blogging, as her real life has been pretty intense lately and she needs to focus on family matters.

So she has asked her friends to help her out and keep the linky going.

I am very happy to help you, Jen! (Even though, true to form, I am 2 weeks and a day late!)

This is what Jen says about Blog Gems:
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 Jen's blog 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.

And here's what I have to add:

It's a wonderful chance to get fresh eyeballs on your great posts from the past.

The rule is that you're supposed to select a post from your archives that fits the prompt... but, being the generous, kind-hearted person that Jen is, it's a lenient rule. She states: "Broad interpretations of the prompt are encouraged so this could be a good chance to be creative!"

And today's theme is: CHANGE! 

We are about to end our School Year here in NYC (and most schools in America already have). The weather is switching back and forth between Spring and Summer day to day like it can't make up its mind which it is.  Everything is in a state of flux, transition.

So find a post about that. Whether you are embracing the changes or fighting them, share with us. It can be big, say a move across the world, or small (ever change a diaper?) And, as the lady says, creative interpretations welcome!

Tell us about CHANGE.

So easy! Come, Link Up folks!



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