All the other (good) stuff

Baking cookies with Ethan

You would think from what I've written about them lately (not at all) that I didn't still have kids, so consumed has my blog been with my mother's death.

But it's perhaps because I do still have kids (two, in fact) and I so strive to be present and cheerful with them in my daily life, that I come to this space (my own) to let all the heaviness leak out.

It is nearly two months since my mother has passed and time has not stopped, not even for a second.

Ethan is now in the final months of fifth grade.  Each time I bring him to or pick him up from school, I look at the tiny kindergarteners swirling past and marvel that he was once so small and that we looked upon the "big boys" back then and found it unimaginable that our sweet little five year old munchkins would ever become THAT.

He is worried about the future, about middle school - both getting into the one he wants (a unique New York City problem, I know) and about what it will be like when he is actually there next year, with new faces and routines and a whole higher order of academic pressure.

He is sad that his Saturday basketball league is about to come to an end. And that the Knicks really suck right now. And that his grandma is dead. (And probably about in that order.)

He grew a whole inch in the last two months.
 
We bake cookies together. A lot. I used to bake with my mother all the time. (Some of the recipes we use are hers.)

Jake & Belt at The Croods screening

Jake is a wonder.

I went into his recent parent teacher conference with trepidation, knowing he'd had a hard time adjusting earlier this year, and what I heard brought tears to my eyes. Happy tears.

They said that all the trouble at the beginning of the year seems to be behind them. They haven't needed the behavioral plan. He doesn't work just to earn iPad time at the end of his day. He is calm, engaged, participating, and if he starts to get out of line (throwing the word "stupid" into every sentence, perhaps, as he is wont to do) all they have to do is threaten to separate him from the group.

"I'm sorry. I'll stop." he says. AND HE DOES.

Furthermore, they all expressed their love for him so clearly. "Some days I just want to take him home with me, I haven't had enough Jacob time!" said his assistant teacher. That she already has a one year-old at home makes this doubly miraculous.

Jacob is having a burst of language and connection that is lovely to experience.

The other day he came into the room, uttering a very conversational "Mom, can I talk to you for a sec?" He stopped when he saw our cat lying upon me, purring. "Cocoa loves you!" he said.

SO much going on in those three simple words: being interested in and observing his environment, correctly interpreting what he saw, understanding the emotions involved, and commenting on it, in original language.

If you know anything about autism, you will know how beautiful this was, indeed.

He is also actively seeking to participate in situations, after observing others doing the same. (Again, awesome!)

Watching me, my friends and family sharing our memories at my mother's memorial service, he asked to go up to the podium himself, and then spoke a few very heartfelt, very appropriate words about his Grandma (more on that soon).

This past Monday I was invited to a mom-blogger family press screening of the new animated movie "The Croods" that Jake has been excited about since the ads and trailers for it stared popping up months ago.

We had a great time - it's a very enjoyable movie - and afterward there was a Q & A session with the  writer/directors Kirk De Micco & Chris Sanders, and Catherine Keener - the voice of the cave-mom. After answering The Moms' questions, they invited kids in the audience to come down and ask some of their own.

Jake and I were sitting near the back. He watched some kids ask questions about various aspects of the script or the production, he listened to the creators answer. And then he told me he wanted to go up and ask his own.

We made our way up to the front of the theater. Catherine Keener saw us standing by, and got up herself to hold the microphone for Jake as he asked: "How did you get the idea for Belt?"

(If you want to watch Jake yourself, it's the bottom video here at exactly 10 minutes in. It may look like I'm prompting him, but it IS the question he told me he wanted to ask as we were waiting our turn. He just suddenly forgot it when the mike was in his hand, and I had to whisper it in his ear.)

I was so proud of my (autistic) boy that day.

(And every day.)

Jacob, me & Catherine Keener at The Croods

So just in case you were worried that I had lost myself in grieving... I haven't.

I try to leave it here.

And in occasional tears on my pillow.

I haven't forgotten that I have two wonderful, alive, full of life boys.

And oh yes, a husband, too.

(Hi, honey.)

So expect me to be bouncing back and forth here between mourning my mother and telling tales from all the other myriad facets of my life.

I'll try to remember to throw in the good stuff as often as I can.

And ask you to forgive if the tears outweigh the laughs for just a little while longer.

This is Jacob. This is autism.

I know I have fallen silent here again. This time it's because I have been overwhelmed by the fallout from the events of the past week. Newtown.

There has been a misguided media feeding frenzy focused on a possible autism diagnosis of the shooter, and erroneous speculation that autism was behind Adam Lanza's heinous acts.

There is much destructive misinformation spreading around the world.

Ignorant, spiteful people have created hate sites about how autism = violence, and proclaiming that autistic people are monsters who should all be rounded up and jailed or exterminated.

I can't...

I just can't...

I can't even breathe when I think about this.

I have not been able to write about it yet, finding myself just too devastated, frightened and overwhelmed to form a cohesive sentence. (Hence the radio silence.)

But many many friends of mine have been writing, voices of love and light to meet and answer the tide of fear hate.

For starters, read these, here:

A letter to Elisabeth J.A. by Jillsmo

My Son Has Autism. Please Don’t Be Afraid. by Jo Ashline

When Children Die, It’s Time to Grieve and to Reflect, Not to Scapegoat by Rachel Cohen-Rottenberg

And also a movement sprang up, a photo meme: "This is Autism" - to put a face to autism as we know it, with words describing some of the wonderful, quirky, delightful people who are on the autism spectrum. Parents are sharing their children, adult advocates are introducing themselves.

And that I could do; thus this picture, with these words.

And we're all sharing it here, on the Autism Shines facebook page.

Come, see the beautiful shining faces of so many of us and our children. Share your own images. Meet some people with autism who are not violent scary monsters, but our wonderful children and our wonderful selves.

OK, I realize if you're a reader of my blog, I'm probably preaching to the converted, but please share this page widely and maybe it will reach someone who needs to hear it.

Peace to you all. More words here soon.

SOC Sunday: Spelling Lessons

Thank goodness for SOC Sundays, because just when I was about to get things done yesterday, I had a wee stomach bug that sidelined me for the day.  And once again, between school vacation full-time momming and LTYM (which I adore, but is a bigger job than I had bargained for) taking over my life, my poor blog is suffering. But with SOC Sunday I can take a snippet out of my brain and call it a post. Wheeeee!

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Jacob is getting really crafty. He's always got something going on... some phrase or word or sound that he repeats over and over.  When he was little it was word-for-word scripting from his favorite TV shows. But he's become much more creative now.

His language is growing by leaps and bounds, and I'm not complaining about that in the least.  OK, I;m lying, I DO complain about it sometimes when he talks all the time. We are a family of talkers, and often there is precious little peace in the house.

There is a lot that is frustrating for Jacob in life, and he needs to vent his frustration like we all do.  And these days, his favorite word to do that with? Is "Stupid" - which happens to be one of my least favorite words in the English language (of course).

The first time he used it, I was thrilled with his being "age-appropriate" (I even wrote a post about it!) but now I'm getting really tired of it.

Because, of course, once he realized it annoys me? Its value has risen sky high. So it's not just being used to express his feelings ("Stupid Batman!" when he can't get the guy to fit in the Batmobile in a way that lets the top close) but instead, it's become his beloved catchphrase.

He inserts it into EVERYTHING... asking to watch "Sponge Bob Stupid Pants," asking for his "stupid" dinner and singing "Twinkle Twinkle Stupid Star" along with me at night.

And then, when I have had enough and start threatening loss of privileges - like his beloved TV - if he says it again? He is changes over to... spelling it out: S - T - U - P - I - D.  And I have to laugh, as he is being so clever.

I still don't like it, but as he is being so S-M-A-R-T about it, I let it slide when he spells it.

The other thing Jake's taken up lately is mewoing like Gary the pet snail in Sponge Bob. This isn't a frustration release, he just enjoys the sound, in a delightful stimmy sort of way. And I know that stimming calms autists and makes them happy, so I'm not trying to completely squash him when he makes the sounds that bring him such joy.

But I really don't want them being bellowed 3 inches from my face, either.  So I am asking him at times to stop meowing. And you know what he's doing, then?

Yup.

M - E - O - W.

Smart-ass kid.

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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...

Feeling Very Hopeful, Indeed

It's the 10th of the month (shhh play along with me here) so I'm over at Hopeful Parents again today.

And while I thought, what with it being April and all, you know, Autism Awareness Month or Autism Acceptance Month (depending on which camp you fall into) and with my son Jacob on the spectrum, I would write another one of my “big thoughts” posts about A.U.T.I.S.M over there at Hopeful Parents.

Yeah. Not so much so. I have been too busy being his mother right now. Which is OK.

Spring Break and LTYM you know. Keeping me hopping.

So go on over to the New! Improved! Hopeful Parents site and read my post: My Turn

Cheerio! 

My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012

Back in the Swing

The mornings are cruel again. 5:45 does not come easily to me. Especially after such a long spate of respite: ten whole days of late risings. No bus to be met, lunches made, homework double checked, backpacks packed, sleepy children to be cajoled and scolded into hurry, hurry, hurrying through pajama shedding, clothing donning, teeth brushing, and breakfast wolfing.

I don't realize how much I adore our languidly paced mornings until they are gone, gone, gone. Children in pajamas until lunchtime or later (me too, some days, me too). Sigh.

Back in the grind now. 3 hours of my workday slogged through by 8:45. My workday which feels like 24 hours sometimes. The 24-7 that is parenting, even still when they are located elsewhere for 6 hours of that, because there is always the clean-up and the prep and the appointments to be made and the insurance companies to spend hours on the phone with because clearly my time could not possibly be valuable.

And then there are the phone calls to come pick them up from school because what was seemingly just cranky in the morning has turned into puking or fever by lunchtime. So all plans are scotched and I must be given over to being a lap, a pillow, the warm safe place my ill child needs to be curled up into. But thankfully not today.

My "to do" list would frighten even the most efficient and stalwart, and that is certainly not me, not even by a long shot. I can only pick and choose today, selecting the screamingly urgent and the seemingly doable to push up to the top, attempt to tackle. I promise myself to not start out the new year feeling failed, inadequate; to accept that I will only get do much done, that reading with my children is more important than a tidy house.

But we must have food, my mother must have her medications, the mountain of clean laundry must get sorted, drawered and shelved before my children wail that they have no underpants to wear.

I blink and it's time to meet Jake's bus home. Don't ask how much of the list I've gotten to, I don't want to talk about it.

Today, sitting on the sofa, munching his chips, Jake asked me "What did you do today when you were waiting for me, Mommy?" (meaning while he was at school). He's never asked anything at all like that and I was floored.

And even though he got bored with the answer before I was halfway through, still my heart sang with the question asked, with his knowing I am a separate person who does things he doesn't know about when I'm not with him, with his curiosity, his interest in the world outside himself. (Pffft to the notion of the autistic lacking a "theory of mind.")

It aroused this thing called hope that flutters its butterfly wings in my chest sometimes. It comes when he asks to see my face when I'm looking elsewhere, when he springs to my side to share something he's happy about (usually a win on his DS game but I'm not going to be picky), when he showers kisses up and down my arm like Gomez to Morticia and says "I love you Mommy" out of the blue.

I love you too, baby, I love you too.

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Leaps and Bounds

Wide-eyed Jake at our building's Holiday party, 2011

I am happy to report some good news, for a change: Jake's original language has been making some marvelous jumps lately. The things he says out of the blue being startlingly observant and detailed, or his conversation loops are going deeper and deeper, continuing to make sense in wonderful and wondrous ways.

Jake to our neighbor sitting in the lobby with her leashed dog the other day as I brought him inside from his school bus:

Jake: You have a dog!

Neighbor: Yes I do!

Jake: Hi, doggie! What's your name?... (then, looking up at neighbor) What's his name?

Neighbor: His name is Jack.

Jake: Hi, Jack, I'm Jake!

Neighbor: He really likes kids.

Jake: (waving) Nice to meet you Jack! (then, to me, done here) Mommy can we go in and pet Cocoa?

A very nice, little social exchange!

Also, yesterday morning, my husband stumbled into the kitchen bleary-eyed as Jake was getting ready for school.

Jake: Daddy what's wrong with your eyes?

Dan: Nothing Jake, I just woke up, I'm still sleepy.

Jake: Dad, open up your sleepy eyes! Bigger, like this! (gives demo of his ridiculously wide-eyed stare)

And? Driving home from the big family Hanukkah party this past Sunday, we took a different route than usual into the city, as we were going to the East Side first, to drop off my mother.

As we pulled off the FDR into the city streets, Jake looked around and asked: "Are we home?"

I explained we WERE in the city but a different neighborhood, on the Upper East Side dropping off Grandma and would then be driving crosstown to the Upper West Side (where we live) through Central Park.

We were moments out of the park when Jake spotted a familiar building, and complained "That's not home, that's (name of our synagogue)!"

Boy does this all make me happy! Combined with his insights the other day (born, unfortunately, out of pain), combined with his amazing artistic spirit erupting, my son is really blossoming forth.

So as we head into this longest night tonight, having passed through the shortest day of the year today, I tell myself:

Have patience, have faith, it will be getting brighter; brighter and brighter, soon. Know it will happen, incrementally, day by day.

Believe; feel the coming sunshine, even whilst standing in the dark.

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Because

Because he would rather skip than walk down the street... and he's so fast that I have to run to catch up...

Because he gives the best hugs, pulls my cheek down to his lips telling me "Big kiss, big kiss for Mommy" and then plants one on me with a loud smacking sound...

Because every day when I meet his bus, he turns around once we're on the sidewalk to wave and yell "Goodbye, Deba, see you tomorrow!" and his stone-faced bus driver flashes him the brightest smile you've ever seen...

Because he draws people with "all the parts" and his drawings breathe with life:

It took Jake 3 minutes to do this sketch of "Mommy" as he was in a hurry to play

Yes, that's Timmy & his fairies from TV's "Fairly Odd Parents"

This IS our cat's expression when Jake's around: anxious

Jake didn't get to finish the body, but I love Bruce Wayne's face here

I tell you: "If you've seen one kid with autism... you've seen ONE kid with autism."

Look at my Jacob with fresh eyes, anew every day, and every day he will astound you.

As he does me,

as

he

does

me.

I'm linking up to Shell's Pour Your Heart Out & Maxabella's I'm grateful for... because I am so grateful for my wonderful autistic son Jacob.

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SOC Sunday: Colorblind

Today's SOC Sunday was inspired by another post that I read today, a really important one, this one, here: This Is Not Really About Cake

In it, Mocha Momma calls upon the bloggosphere to be brave and talk about race in a real and substantial way. Please go read that post. (And down into the comments, the one from Suebob, it's brilliant.)

This deserves more than a quick SOC Sunday post from me, and it will get one one day. But also one of the things that holds me back from writing about race is my tendency to over-think things. And the more important they are, the more so this tendency.

Race is such a hot topic, as in potentially dynamite. It is a touchstone. I want so much to not make mistakes in this sensitive area, to never, ever hurt anyone's feelings. And so caution makes me timid, which I abhorr.

So I'm going to just open up here on the first thing that came to mind as I thought: What can I say about this? My story is a bit off the center, but it's what I can bring today.

Soon I will delve deeper, into the swirling mess of contradictory notions that stream through my head when I start to try to untangle all my thoughts and feelings on race. There are clearly more posts here, and I won't let them die in my head for fear of exposing myself.

Because what we don't talk about festers under the surface, unless exposed to fresh air and sunshine. Or moonlight. So, here is a start...

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One of the many reasons I've been thinking about race lately is that Jake keeps bringing it up. Well, not exactly. He brings up the color of people's skin, but to him that has nothing to do with race, he has no notion of race -- an abstract concept if ever there was one.

One of the things I admire most about my son Jacob, one of the ways his autism is a gift, is his colorblindness. He doesn't see white people, brown people; Asian people, Latino people... he sees... people.

Or rather, he sees the different colors we come in and to him it is merely color -  a favorite topic these days:  Eye, hair and skin color differences are all just ... interesting to him for their visual component. There is absolutely NO value that is attached to any of these differences, no preconceived notions, no expectations that go along with the color of a person's skin or the texture of their hair to my son.

And he is very conversational these days, and very observant, so while we are out and about on the streets of New York City - where people always come in every size, shape, age and color - he wants to talk about the people he sees... So I end up having very public discussions with Jacob about race.

"What color is his skin, mommy?" Jake will ask in his too loud voice about a man standing in front of us on line. And I have learned to not flinch, to answer, matter of factly, the question asked, knowing there is no judgment in the slightest little way behind it, just... observation and conversation.

"His is skin is brown, Jake" I'll say, "And isn't it wonderful that people come in so many different beautiful shades of beige, tan and brown?" Truthfully, that latter part is probably more for the people who might be listening than for Jacob, because he already knows all this, instinctively.

Jacob has warm feelings towards nearly everybody he sees. He does not parse into "like me" and "not like me."  I wish I could be more like him.

I will never succeed, having lived in the world too long as a white person, knowing what that means, the automatic below-the-conscious-unless-I-work-to-be-aware level of privilege that wraps me in, that I bring with me everywhere just because of where the ball landed in my genetic roulette spin.

But Jacob? He is free of this. His classmates are generally more brown than white, his teachers have often been too. To him, this, his world is just an interesting rainbow of shades. He talks about skin color the same way he talks about eye color, hair color or the color of someone's shirt. Exactly the same. Observationally.
 
People say we learn from our children, but when they have special needs there is a tendency to forget this, to get so, so stuck in "teaching them" mode that we forget they can have important lessons for us, too, can be *our* leaders. This is something I hope Jacob can teach me, to bring me into his colorblindness.

He declares that he and I are pinkish beige (and we are). We talk about how humans are not ever purple or green. And always: "You know that while we are different on the outside, we're all the same on the inside, human." But again, I don't need to tell him that.

He knows. My son, the autistic one, he gets it.

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OK, I must confess this was NOT a true stream of consciousness post. I went way over time, I went back and edited it. A lot (because this topic seemed too important for sloppy and unclear writing). But it came out of the free writing I did this morning on race, attempting to do a SOC Sunday post, so I still want to let it stand here, link it up. (I don't think Fadra will mind, right? Especially since I fessed up?)

Next time, I promise: true random brain dump, unedited (watch out, world!)

Also, please, bloggers who are reading this? I know you think about race, too. Join in the discussion. Write your own post exploring how race affects your life. Let's keep this dialogue going....

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...

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.

Coming Along

Jacob’s speech is shifting again, he’s moving ahead, coming along… swimmingly.  The pace is fairly glacial, and so like the encroaching ice it moves so slowly you don’t notice it has crossed the line, carried on to elsewhere until, suddenly seeming, it is there!

Jake used to ask everyone questions that he already knew the answers to: "Is that a baby?" while staring at a baby. Contrary to the standard “book” on autistic people, Jake actually found it easier to ask a (straightforward, factual) question than to make a declarative statement.

Well, that seems to be shifting now, and Jake is just declaring away to any and all around him. Thankfully most of the people he talks to are willing to play along, not delve too deep into why a big kid is sounding so much like a little kid.

There is no meanness. Yet. But, then again, he hasn't tried talking to too many teenagers. Yet.

Jake to a man walking a dog the other day on the street: “Excuse me, Man? You’re walking your dog!” Luckily the man smiled quizzically then kindly, and agreed that yes indeed, he WAS walking his dog.

When we took a train ride recently, on the return trip home the train was very crowded and it took a long time for the conductor to make her way through the car. Jake was leaning out into the aisle watching her, clearly impatient to talk to her.

He started to shout out to her, but I made him wait until she was close. When she was two rows away from us, he just couldn't contain himself any longer...

Jacob: "Mrs. Conductor!"

Conductor: "Yes?"

(I couldn't wait to hear what in the world he was dying to say to her; really had no clue.)

Jacob: "I have a ticket!"

Conductor: "And I'm going to come punch the heck out of your ticket in just one moment. Wait and I'll be right there."

When she comes to take his ticket, Jake is beaming, then makes a request: "Make a happy face, please." (The conductor on the outgoing train had done that, pleasing Jake no end.)

Conductor: "Okay..."

And then? Jake kicks it up a notch: "With teeth, a happy face with pointy teeth!" (I'm thinking: no more vampire movies for you, my son.)

The conductor, bless her soul, is game: "Well, I'll try..."

And she did. And Jake was pleased. It doesn't look much like a vampire happy face, but she get's an A for effort and kindness, for sure.

The other day I was listening to Jacob tell me something when it hit me like a ton of bricks: He was using complete sentences without prompting.

A year ago, while he was certainly capable of using complete sentences, we mostly got single words and short phrases (if it wasn't a completely scripted phrase) unless we pushed for more. And so we had to push, push, push him. And deny him, pretend to not understand. If he could get what he wanted with two or three words, that's all we'd get.

Instead of "I want to want to wear the red shirt today, Mom, can I have it please?" (now) he would say "Red one." We had to pull expansiveness out of him, and it was exhausting.

So when did that change? I couldn't tell you. When did this full-sentence-talking-boy emerge? Dunno.

That night I asked my husband: "Have you noticed Jake almost always talks in full sentences these days?" And he had to stop and think about it, and then agreed with me that yes, he does, and no, he too has no idea exactly when that shifted.

And that's the maddening thing. There is no exactly. It's minutely incremental, like how sand dunes "walk" across a desert, a few inches a day. And you never notice the day-to-day movement until suddenly it's clear the landscape has altered irrevocably.

That's Jake.

He is also asserting himself in new and interesting ways...

When Ethan grabs the TV clicker as he sits down in the living room where Jake is in the middle of watching a show, Jake will now pipe up with: "Ethan, don't change the channel... I'm watching something!" 

When I spoke to him the other day and addressed him, as I often do, as "sweetheart" I got this response:  “Don’t call me sweetheart. My name is Jacob.” (This is probably an adaptation of a script from a TV show, book or movie that I just don't recognize, but it's so damn appropriate that I'm going to count it as amazing anyway.)

I don't know where all this is going, but I know it's a long way from where we've been. And for this next year,  I'm vowing to pay more attention on the way,

But I'll probably still be taken by surprise by Jake's changes. He's a sneaky one, that boy, growing and growing up, changing and evolving while I'm distracted and focused elsewhere for a moment.

I look at him and he's standing in place, admiring the flowers. I turn around and there he is, a whole square further down the path, smiling and waving.

And as long as he's forging ahead, I wouldn't have it any other way. Keep going Jake, keep going... leave me in the dust, please.

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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Signs and Portents

I was cleaning up the living room today - don't snigger people, I do DO that (about twice a year or so) - trying to organize all the boys' papers from this past school year, when I came upon some wonderful drawings of Jacob's and a note sent home by his teachers that I want to share.

Here they are:

I asked Jake what this was. His answer: "I have veggie chips in my brain, Mom." They seem to be making him very happy in a serenely content sort of way. Works for me. Who needs brain cells when you can have yummy veggie chips filling up your head instead?

Jake wasn't able to tell me exactly who (or what) the figure in the middle of this somewhat disturbing image was. Though he did make it clear that he/it is a "bad guy" being tied up in a bathtub.  The significance of the numbers 56 & 48 in the circle on the lower left edge? Unknown. 

Ethan thinks it might be Jake's interpretation of a character from the Dragonball Z Kai TV show. I think it looks like an evil sunflower creature with a black hole in the middle of his head. The "X" marks on his face *might* be indicating that he is dead.

We will probably never know. Some of life's mysteries should remain just that, I suppose.

I have mentioned before my son's love of movies in general and Rango in specific. That his teachers "get" this and know exactly how to encourage & reward his hard work and good behavior (praise and a pic of a favorite character)? Thrills me to no end.

It was a wonderful school year for Jake, and so far three days into Summer Academy ("School Camp") he is happy as a clam - and they haven't even started swimming yet!

I feel that his fairy godparents must have been looking out for Jacob (FINALLY!) when we tumbled into this school, late last year at the very wee end of the placement process. It hadn't even been on my radar for the past few years (though I had toured it when Jake was a turning-5 tot and I was looking at SN Kindergartens).

And now, blink, blink, and it's been a whole year passed. And the school is a perfect fit for Jake. And I love each and every teacher, therapist, aide and administrator there, significantly more than words can tell.

Jacob's imaginative play and storytelling abilities are really growing by leaps and bounds right now. And while it seems to have just sprung out of the ether, I know it had to have been growing slowly, underground, like taproots for a long time before the wonderful comes bursting through into the sunshine.

Looking at these pictures from the late winter, I shouldn't be surprised at what's going on this summer. There is so much "story" in them. They really are signs of an active and engaged imagination. Portents of good things to come.

Now when Jacob takes my hand and asks "Can I tell you a story, Mom?" and then begins "Once upon a time..." I know it has grown from a happy Jakey with his head full of veggie chips.

Can't wait to see what pops out of his wonderful (and deliciously crunchy) brain next.



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What He Needs

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

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

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

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

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

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

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

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

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

Alone with her husband.

Unfathomable to me.

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

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

Jacob needs me just too damn much.

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

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

It WAS another life, and I was another me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He needs me.



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Show me the Love

OK, I am usually pretty Zen here at The Squashed Bologna.

Read me, don't read me, pffffft.  (Are you hearing the ancient wise turtle's voice from Kung Fu Panda here?  Good, we're in synch.)

But I'm going to break form today.

Today I am shamelessly shilling for some bloggy-love.  Begging for your vote.  Asking to be nominated.  Self-promoting away.

There are 3 places I need you to show me some love.  Two take just a little clicking, the third involves some typing, or copy-and-pasting (I'll try to make it as painless as possible for you).

But also?  If you're not into all this, just not a direction follower, wouldn't click or submit even if it earned you a million dollars (no, this won't)? 

That's OK.  That funny little story at the end of this post to reward everyone for getting through all this drivel?  It's there for you, too.

Vote for me, don't vote for me, pffffft.  I still love you.

First, see that little button on my right hand column near the top?  The one flashing (cringe) "Top Mommy Blogs.com" alternating with "The Most -Popular- Mom Blogs on the Web!"  Yeah that one.

Having trouble finding it?  OK, I'll paste it in here, too:

Now, click on it.  Even better, RIGHT click on it (or "control" + click if you're Mac like me) and open it in a separate tab or window so you can still keep reading me here too, at the same time.

Once you're there, find my little niche "Special Needs" in the far right hand column "Categories" list and click on THAT.

Now find me on the Special Needs blog list (back on the left) & click on my blog title.  (I know, I know, I need a button.  Want to make me one?)  That will bring you back home to me, here.

That wasn't too hard, right?

The cool part?  You can vote for me there every day, once a day.  So if you feel like doing it again tomorrow?  Terrific.

If not?  Pfffft, whatever.  I still love you.  Zen.

Next?  I'm taking you over to Babble.  A very cool, very BIG Mom Blogger site.  My new friend Ceridwen writes for them, and she's awesome.

They've already made their "2010 Top 50 Mom Blogs" list, and no, I ain't on there (get real, people). BUT, they are also asking for nominations and votes for the rest of us: the little guys, the also-rans.

And that's where your part comes in.  I have been nominated.  Now, all you have to do is find me there and click on a "like" button.  That's it.  Easy peasey.  Let's go...

Click HERE to go to Babble's nomination page:

Now let's find me, The Squashed Bologna.  First click on the alphabetical tab, then go to the "T"s.  As of this morning I was number 516 alphabetically, on page 11, but that could change.  (Annoying: you first have to click on page 9 to get to the higher numbers, I trust you can figure this one out.)

Now (here's the easy part): click on the thumbs-up "I like this blogger" button.  (You do like me, right?)

DONE!

OK, now, here's the last part (or you can just skip to the funny story at the end if you're exhausted by now, really I won't take offense):

The 2011 Bloggies

There's this thing, the Eleventh Annual Weblog Awards, known around the inter-webs as "The Bloggies."  They're kind of a big deal in the blogging community.  I have less than a snowball's chance in hell of winning one, but it would be nice to be nominated.

So I would love for you to nominate me.  You have until January 16th to do this.

The cool part?  You only have to do this once.  Promise.  (If you do it twice, it cancels your first one.)

Here's how this one works:  You go to the nomination website, here.

First:  READ THE RULES

As they say, you can nominate a blog in any and all categories for which it is appropriate (multiple categories OK).

So for me, may I suggest (in order of appearance on the form):

Best Parenting Weblog
Best Writing of a Weblog
Best-Kept Secret Weblog
Best New Weblog
Weblog of the Year

but definitely NOT

Best Food Weblog

(not that kind of Bologna, remember?)

You fill in the nominee's blog name and blog URL. These are the correct ones for me (you can copy and paste them):

Nominee: The Squashed Bologna   URL: http://www.squashedmom.com

And this is how it looks on the ballot:

Now, here's the catch, and this part is VERY important:

According to the rules, you cannot just nominate me, you MUST nominate at least three (3) blogs altogether, and they can be in any categories on the ballot.  So besides The Squashed Bologna?  You must pick at least two other blogs to nominate.

If you're a blogger or blog reader, this will be a cake-walk. I'm sure you're already planning on how to fill up the ballot.

But if you're not?  If mine is the only blog you read?  May I suggest three wonderful other blogs that fall into the "Best Group or Community Weblog" category.  I am a member of all of these, and they are quite worthy of praise and support.  Here's their info:

Nominee: Hopeful Parents  URL: http://www.hopefulparents.org
Nominee: Band Back Together  URL: http://www.bandbacktogether.com
Nominee: The Red Dress Club URL: http://thereddressclub.blogspot.com

And how the ballot looks filled in:  

Finally, you need to fill in your e-mail address at the very bottom, here, and then "Submit":

And then, when the Bloggies send you a validation e-mail?  For goodness sakes, please click the link inside it to make it so!

You are now done.  Thank you!

I know that was a bit of work, and I really appreciate all those of you who have gone the distance with me, here.  I'm certainly not the biggest or most popular blog out there, but I know I have some loyal readers, and it just feels good to get that jolt of validation now and then; gives me the juice to keep on writing.

Maybe this will help me to get a little more noticed.  Because if I can get a bigger readership?  Find a way to make some money from my writing?  My whole family will benefit greatly.  If I have to go out into the world to get a "real" job that requires me to be absent from home for large blocks of time, I know my kids in general and Jake in particular will pay a price.

OK, I promised you a cute story if you stuck with me through to the bitter end, and here it is:

The other day, Jacob's wonderful ABA therapist, Becca, had a late session with him that was overlapping his dinner time.  Jake was hungry, had finished all his homework, and so Becca sat with him while he ate.  They were practicing the fine art of dinner-table conversation.

These days, Jacob tends to go on and on about movies he has seen advertisements and trailers for, reciting their names and talking about their future opening dates.  And, Jake being Jake, his conversational forays tend to take the form of questions: "Can we go see Rio? Opening on April 15th, Mommy?" (He's got our weekend entertainment planned out through early summer.)

But wise Becca has found a way to steer the conversation away from movies, and they are actually discussing... his actual dinner.  And I get to overhear this gem:

Jake is holding a piece of (GF/CF organic chicken-apple) sausage aloft on his fork, studying it.

Becca:  "What is that, Jacob?"

Jake:  "Mr. Sausage."

Becca:  "What does Mr. Sausage say?"

Jake (glint in his eye, doing a funny little voice):  "Don't eat me!"

Followed by... CHOMP!  And laughter.  My son, the merciless sausage devourer.

I've said it before, and I'll say it again:

Anyone who thinks people on the spectrum have no sense of humor can go suck an egg.  They have clearly never met my son, Jacob, who IS da bomb.


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Getting Hip with the (SN Blog) Hop

Last Thursday was Thanksgiving (hope you had a lovely one, we got through ours, so that's a win), so the Special Needs Blog Hop took the day off, and now we're back, and hipper than ever.  Or, if you're like me, the turkey and all the trimmings (pie, mmmm... pie) has added some to the dimension of your hips.

Anyway, here we go again....

THIS WEEKS THEME:
This week it’s about turning all the frustrations and negativeness into something positive. What is a recent accomplishment that your child has made?

I can do this!  Because Jacob, even when I'm feeling stuck in the middle of all the fears and frustrations about him, is always full of all kinds of awesome and wonderful. 

OK, here's one... although to many this may sound more like a problem, believe me, it's an accomplishment:

Jacob had started to verbally protest the things he doesn't like in his life.  A  lot.  He has become the king of "No." 

He knows what he wants and doesn't want, and wants US to know it too.  Even when he goes along, he does so under protest. 

Why is this good?  If, like me until recently, you have had a kid on the spectrum who has been too compliant, too unnaturally "good" for his age, you know what I'm talking about, here.

Sweetness and good nature are fine.  But an eight year old who meekly goes along with everything they are asked to do, or who shows his displeasure by getting all spacey/sleepy and shutting down?  Not so good.  In fact, highly untypical.

I should know.  Jake has a twin.  A spunky, opinionated, adorably obstinate, wise-ass twin.  Jake is becoming more like him, in this regard, at last.  God help me.

This has been brewing for a while.  I have written about it before.  But these days?  The spunk is front and center.  So I thought I'd celebrate it here, as an accomplishment.  Because it is one.  Not the most convenient and pleasant development for me, but important for him.  And that's what counts, right?

And also?  Sometimes?  It can be entertaining, when I remember to keep my sense of humor intact.

Jake had me cracking up today.  Once again, he did NOT want to do his homework.  Who wants to do homework?  Not me!  Not his (sort of) typical brother, Ethan, either.  All I have to do is say "Homework Wars" to my mom friends and they all groan in sympathy.

So when Jake gets home and I say: "Homework time, Jake" he says: "No, no homework, Mommy!" and also: "I don't like homework."

Which I acknowledge is his prerogative.   He may protest as much as he wants, can tell me how much he hates it.  But we're still doing homework.

"You are a student.  Doing homework is part of your job, Jake.  Time to do your job."  In spite of his new found spunk, Jacob is still, at heart, a sweet and compliant boy.  So when he sees that, all desire to the contrary, he is not in charge and that homework must be done, he comes to sit at the table, picks up his pencil.

I give him a choice of starting with the math sheet or the writing.  He chooses math, and settles in, I *think* peacefully.  Sure enough, he marches through the problems like a trooper.  But *NOT* like a good soldier.

As always, he narrates the process out loud as he does the math, but this time with a little creativity:

"Seven plus five is... twelve. NO!"

"Four plus four is eight. NO!"

"Fifteen minus nine is... six. NO!"

And so it went.

Yes, a whole page of math problems, punctuated with a loud "NO!" after each correct answer.   Protest duly noted, we went on to the writing sheet.

"What is the dog in the picture doing, Jake?"

"Playing with the boy. NO!"

"OK, write that down.  But let's skip the 'No' part.  OK, honey?"

"Yes. NO!"

It's going to be a long, long evening.

(You go, Jake!)


That's our story.  Now, you jump in & have fun:

And the Hop goes on...

Thursday again, and I'm hopping away on the:

This week, there is not so much a question to answer as a direct command: "Tell us a funny memory involving your child or children." (or we make you walk the plank?)

OK then, nothing like being asked to produce funny on the spot that is nearly guaranteed to freeze me up in my place. (OK, yeah you have figured out that my M.O. with these things is to complain about the meme in a funny way for a long time, and then comply with it.  Leave a girl her dignity and pretend you didn't notice, okay?)

Funny, OK, funny... holy crapola, batman, my mind is a total blank. Maybe it's the sleep deprivation... eight bloody years of one ASD early-riser coupled with an ADD late-to-bed insomniac yakking away at midnight have taken their toll.  My brain is not what it used to be, the steel trap has transformed into leaky sieve.

So many stories swirling round my brain... but this one has sparkled and caught my mind's eye:

My father passed away in mid March of this year.  Instead of holding a funeral at the time, we had him cremated (according to his wishes) and then, a few weeks later, we held a memorial gathering to celebrate his life and his work, and also the 93rd birthday he nearly made it to.  This was also according to his wishes, matching his upbeat, larger-than-life personality.  He wanted a festive gathering in his honor, he wanted a party, so we gave him one.

On March 28th, nearly a hundred family members and friends, residents and staff of the assisted living community where he and my mother lived gathered in the common room to celebrate my dad.  I needed for my kids to be there, to see family, to say goodbye to their Grandpa, to remind their sad, sad Grandma that life goes on.  But I was worried about Jacob and his ability to sit still and remain quiet while I gave the main eulogy at the start of the event.

Turns out I was worrying needlessly.  Jake sat right in front of me, next to my husband, and throughout my long eulogy he remained quiet as a mouse, not even a peep, his eyes trained on me the whole time.  I guess I gave quite a performance, because when I finished the crowd applauded (which embarassed me thoroughly).

Seeing all the people around him clapping for his mother, Jake joined in enthusiastically, then upped the ante by encouraging me with a shouted out: "Great job, Mom!"

A wave of laughter spread through the room, and it was just what we needed to start up the next part of the day: everyone sharing our funny stories and memories of Dad, including retelling all his favorite, awful, pun-filled jokes.  See?  Sometimes it's good to have someone who is completely unaware of the social rules with you, to shake things up a bit.

I was so proud of my son for his ability to find his calm listening space, and for showing his support for me so vocally at the end.  You, rocked, Jakey!  (Ethan, on the other hand, played his DS throughout the event, but I'm guessing that was his way of keeping the scary, sad feelings comfortably at bay.)

So now, come hop along with me....

If it's Thursday, it must be the Special Needs Blog Hop

Thursday again?  So fast?  Welcome to week three of the Special Needs Blog Hop.

OK, I just found out that this week's question is:  

What do you love most about your Child?

Now, how the hell do I answer THAT?  There is so much to love about both my boys.

And I'm never good about these "the most" or "favorite" questions, because my brain is not really built for linearity and ranking. This is just one of the reasons it drives me crazy that Ethan is always asking them: "What is your favorite Pokemon?" "What TV show was your favorite when you were a kid?" "What is your favorite color? Your second favorite? Your third favorite?" And of course: "Who do you love more, Jake or me?"

So I have a policy: I just don't answer those questions.

Because in true ADD fashion, I view things more as points scattered across a field as opposed to in tidy lists.  Yes, even my brain is messy.  Although ADD leap-frog thinking does lead to insight and invention, it also makes it really hard for me to answer conventional questions simply.

Filling out those essay style applications for special needs schools for Jacob?  Pure torture.  I would go on and on and never get to the point, then have to seriously trim and edit for days. Because they were asking me open ended questions like: "What are your child's greatest strengths and challenges?" And my view of Jacob is so complex and ever changing it is impossible to distill down to the basic and quantifiable.

And then to be trying to be truthful about him while still making him sound like the perfect package, exactly what they want in a student (because the competition for these schools is fierce, you know)? I nearly broke out in hives last year over all this. And it did set me on the path to Momsomnia.

So now I have been handed another of THOSE questions to be answered here, on MY blog?  DAMN!

What do you love most about your Child?

Can't I just answer "EVERYTHING" and be done with it?  No?  OK, how about this?  His big, sometimes cheesy smile:

Love that joyful Jacob boy!

Twinkle, Twinkle, Little Poopyhead

Anyone who says autistic kids have no sense of humor has clearly never met my son, Jacob.  That’s the danger in making generalizations about autism. As the old saying goes: if you've met one kid with autism... you’ve met one kid with autism.  

Jacob right now is in an awkward phase of wanting to relate all the time but having no sense whatever for what are appropriate and inappropriate ways to connect. He has no innate inner compass  to guide him, and taking lessons from his often highly inappropriate twin brother Ethan is, shall we say, problematic.  

A while back Ethan taught Jake to say "poopy-head" which is why when Ethan comes to me complaining that Jacob is sing-songing the phrase "Ethan is a poopy-head, we like you very muuuch" over and over, I tell him: "You're not getting much sympathy from me on this one, kid. You taught him that lovely term, so it's you own damn fault."  

And no, I don't actually say "damn" to my kid. I just think it very loudly. 

And then I tell Jake to stop it, that it's not OK to tease, that that is NOT a nice word to use.  So "poopy-head" goes underground for a while, but you never know when it's going to surface again.

Last night Jake got to bed late, even later than usual for a non-school night. We listened to the radio during his bath because Jacob has a great love of music and seems to not mind his mother's off-key crooning along.  There may have been some dancing mixed in with the drying off and the donning of the PJs, for, you see, great songs just kept on coming on every time I was about to turn it off. 

And I know it's hard to go from dancing right to bed, but when his eyes light up and he enjoins me with a "Dance with me Mommy, pleeeeease?" how can I resist?

How can I resist engaging in joy with my son, for whom so much of his day is lessons, lessons, lessons, and directives. Jacob hears all day long: "do this, do that, don't do that, stop, STOP!, for heaven's sake don't do THAT."  

So I said "Yes" and we danced away, bouncing, wriggling, stomping and wailing. "Stop in the name of love, before you break my heart..."

And then of course, a glance at the clock and: BED, NOW!  

Jacob has, historically, always been my easier son to put to bed. He climbs up into his top bunk, blue-bear is located and securely crooked underarm, we sing our two requisite songs; I tell him about the day that has been in the form of a story ("once upon a time there was a boy named Jacob...") and then let him know what's coming up ("And what's tomorrow, Mommy?") a kiss and he's gone. 

"Goodnight Mommy, tomorrow's another day."  

But lately his spunk has been rising, and the compliant, perhaps too compliant little boy is falling back a bit as Mr. Sass is starting to feel his oats.  And I know this is all for the good, that typical eight-year-olds are not nearly as sweet and obedient as Jacob has been, that he is veering toward normal as his feisty gently rears up.   

A large part of me is grateful, cheering him on even, while another part (the one that is already short on sleep) is groaning, bitching and moaning.  I know that for Jacob to grow into his own, the ways in which he is pliant and "easy" will have to fall by the wayside for a while.  I even wrote a post about how happy I was that he learned to "cuss" when frustrated.

But the teenage years?  I don't even want to think about that yet, though they loom, they loom.

So now, at bedtime, instead of meekly marching into his room when Mom says "Bed, Jake", I'm getting the "No", the "I hate bedtime", the "I don't want to go!"  

And then last night, in spite of being in the giggliest of moods, post dance-marathon, he starts sweetly singing our first bedtime song as he climbs up into his bunk, seemingly without too much protest.

"Twinkle, twinkle..."

"Oh, good" I think "relatively easy, tonight"

"little..."

I'm already planning  my rapid escape.

...poopy-head!"  Raucous laughter ensues.

My son is da bomb.