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3:40 – I  pick kids up from school.

3:41 – I take Lo to a friend’s while we drive downtown to get Brandon.

3:42 – Jack starts reading his book.

3:43 – 4:18    **crickets**

4:19 – Jack shuts his book.

4:19:03 – Jack says:

“Hey Mom did you know Cooper gave me a Pokemon card today? Cooper D___  from Cub Scouts? You know, Cooper D___ from school?  He gave me one of his older ones but it’s still in pretty good condition. The card is Shivy, I think. I think it’s called Shivy, and it does 20 damage. They all have different names and powers and stuff. Here, Mom, see, if you look in the right corner you’ll what all you can do with it. And on the bottom, too, I think.  I think I’m going to see if Brandon wants to get some cards and learn to play it with me; you and Lorelei can play it too if you want, but it’s OK if you don’t want because I know sometimes you ladies want to do other things than do what Brandon and I do, like play video games and stuff. I wonder how much these cards are more expensive than like, my mini figures and stuff. I should probably look on eBay to see how much they are because if they’re like, a dollar or something, I probably would save my tokens and spend them on Pokemon cards instead of video game time. I don’t think I’m going to play video games until like, Sunday, so I can read about Pokemon and how to play and how much the cards are and stuff. Do you think your friends’ kids want to have a playdate this weekend to play Pokemon? I bet if they’re older than me, like say 10, they probably would know more about Pokemon and how it works and the best cards to get. They probably could tell me how they got started and what cards are best and stuff. So you should probably call your friends and see if they want to play. Are they brothers or twins, these boys who play Pokemon? Do they have little sisters that might want to play with Lorelei, because I don’t think she will want to play Pokemon yet, I just don’t think she cares much about cards and stuff. Cooper gave this to me today at recess when we were done playing soccer. The teachers sometimes divide us up on to teams and we count off to make two teams and today Pedro Jose was on my team and he’s really good. I don’t think I want to play soccer again next year because I just like playing at recess but not for like, a real game and stuff. I wonder if it’s very expensive to get into Pokemon or if I’ll have to save up like I do for my Legos sometimes. I think maybe tonight when we’re done with dinner I should go on to the computer and check eBay to see how much the cards are to start so I know how many tokens to save. I think you can get these cards at Target and card shops and stuff, but I think we should see how much they cost first, but I bet Brandon will be excited to play with me because he likes this kind of thing I think. Right, Mom?”

4:23:05 – Jack takes a second breath.

4:23:07 – I smile.

4:23:08 – My head begins to pound a little behind my left eye.

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Hi, I’m Susie, and I like rainbows!

Hi, I’m Johnny, and I like football!

Hi, I’m Mikey, and I think school is neat!

I AM JACOBY, LORD HIGH MASTER OF THE DOMINION MZULNOC.

I WILL CAPTURE YOUR SOUL AS THE VERY ESSENCE OF POWER.

Hiya kiddo. Eight years ago right now I was walking into the hospital after 13 hours of labor, cussing through contractions and demanding Miss Megan not speak about the candy in the vending machine. In two hours and forty-eight minutes more you were born, all purple and quiet in a room full of people praying you’d make a sound.

If I’d only known how loud you’d be after that first squawk.

I love you Jack. You changed my life irrevocably for the better.


That’s what Jack would like the name of his biopic to be someday. I’m down with it.

We watched Temple Grandin last night, and there’s no real clever or undramatic way to say that I pretty much cried from beginning to end. Little rivulets of wet just slid down my cheeks, whether my eyes were wide as I calmly watched or I was doing my involuntary mouth-scrunched-to-the-side attempt to stop from launching into full-on ugly cry. I think it was a little disconcerting to Brandon, since he kept asking why I was crying now, and I just kept shaking my head and saying because. Which is the most helpful kind of answer, I know.

And it wasn’t necessarily that I was overcome with sadness, though I’d be lying if that didn’t have a component. I think it was simply the recognition I was seeing, over and over, that hit me so hard. It was really hard to see all of the mannerisms you stereotype for Asperger, being so subtly and incredibly acted as if the story was about my son and not someone else. The familiarity of Grandin/Danes’s stims and actions (reactions) were so familiar to me it was shocking, though I suppose in fairness I’m not sure why. Probably because Jack is Jack to me, and I (obviously) forget that some of his behavior is not personal or individual, but tied into his hard wiring. Which even if these behaviors are not always.. mmm.. awesome, it’s simply hard to accept that once again, my sweet monkey is at the mercy of something bigger than he.

More than that is the idea that if Jack views his world the way the movie suggests, he really is the most resilient little kid I’ve ever known. All kids are resilient, sure, but I don’t know if I could continue to truck along like he does with that much sensory overload and confusion. And I know he trucks along because he doesn’t know that this isn’t life for everyone, but that ignorance itself makes me sad because it simply hurts me to think that there’s no foolproof or guaranteed way to protect or even help him navigate this. And that’s so maudlin and dramatic, I know, but fuck if it isn’t actually true. He told me a few weeks ago that he knows his brain is different, and that he has ‘storms’ in his brain when he feels himself getting upset, and the thunder and the lightning get to be too much and that’s when he needs a break and he KNOWS THIS and he’s ONLY SEVEN and it simply hurts me that it hurts him.

And what if this is what his life will be like? Always being unable to read people or situations, cringing when he hears the hand dryers in a public bathroom or flinching at automatic doors? He does those things, and I hate it for him. He’s grown so much since he was little, but do I really think he’ll ever just ‘catch up’? I don’t know. I still think so. Maybe that’s denial.

And I don’t pity him as if I think he will never be successful or will live a life less fulfilling than mine; I have the wisdom to not presume other people’s happiness. But what makes me sad is knowing that he struggles far more than my other child, and his struggles don’t always make him wiser or stronger –  they’re just things he learns to adapt to because he wants to be accepted. I see him wanting to understand the game, but not knowing how to ever play, because the rules elude him. How tiring must that be? Kid sleeps like a rock; I would, too.

So yeah. I don’t feel this degree of sad very often, because it’s not helpful. I focus on the wonderful things about him because he deserves it and I agree with the movie’s motif of different, but not less. But regardless of why or how it’s there, the fact remains that my child functions in a way that makes it harder for him, and my inability to ease or protect him like any worthy supermom could, sucks. Period.

And before you grab your pitchforks to hunt me down for being all evil Momsville, let me tell you that he and Brandon spent a long time on the internet machines going over the rides beforehand, and he was asking for that one in particular. And once again I am amazed by his perseverance. He obviously thought he was going to meet his maker in that picture, yet he was totally fine immediately afterward, telling me that the ride was horrible, and beaugarding my ice cream while suggesting we move on to the Fury of the Nile.

As Lorelei would say, he cracks me out. Sweet heysoos I love that boy.

An omniscient TIME KNOWER and BEDTIME MASTER. Who SINGS. And WORKS at WORK.

I will teach you to WALK because I am that awesome. Be jealous.

Coach: “Jack go stand on the field by the ref.”

Jack: “OK, what’s a ref?”

He is not good at all, people. Like, at all.

But I truly can’t explain how proud I am that that has nothing to do with autism, and everything to do with his being related to me.

So this morning as the kids and I trekked across KC on our thrice-weekly school vs home commute, Jack all of the sudden burst into tears. I did that swerving-thing where you spin around in your seat and try to gauge based on sight if he’s just upset or if he’s bleeding or on fire or something. He had his head tipped back as far into his hood as he could, and tears were just streaming down his face. When I finally got him to answer my pleas for an explanation he said he wanted to know why Lucky had died. And where he had gone. And who took him there. And what he did there. And if his mom was sad. And if that meant that great-grandpa Woody or Grandpa Great were going to go, too. And last of all if heaven was on the moon.

Jesus Christ, I hadn’t even started drinking my coffee yet.

So I scrambled (because in the end all parents know that most life-defining moments sprung on them are flat-out scrambling), and quickly tried to weigh validating his sadness with how much time we could really spend on this if he had to go to school. Also up there is the fact that validating Jack’s anxieties too much might have him spin out completely, and he was already having one hellaciously kind of existential crisis for 7:40 in the morning.

I told him that Lucky had been sick and old, but that he was happy now.  “With Nana’s dog, right?”  Yes.  “Is he with God?”  Ummm… do you think so?  “Yes.”  OK, then he is.  “Are they in heaven?”  Sure.  “What’s God doing with him?”

“Feeding him treats”, Lorelei said, completely unfazed and never turning from the window.

He told me that he knew he needed to calm down before school, but that ‘the tears keep coming out of my eyes’. I pulled over so I could give him a proper hug before dropping him off, but he just seemed miserable; it’s a sad truth that platitudes really are worthless when someone is grieving. And I really wish I knew what had sparked it. My thought is a dream he might have had, with that sucker punch realization thinking about it later that the details are either totally true or completely the opposite of whatever you’d dreamt. Who knows. He couldn’t tell me. I mean, he didn’t even realize Lucky was even missing from the house until a Wii Fit pet roundup produced an AWOL member two weeks ago, two months after Lucky had died. Jack’s mind fascinates me.

In the end he seemed to find some peace when he declared he wanted to write Lucky a letter to send to him in heaven (on the moon). To tell Lucky that he was a good cat, even though he bit sometimes, and that we all hope he feels better from his sickness by taking lots of naps. I told Jack that that was a great idea, and that I loved him as much as anyone could possibly ever love another person.

And that is all I can do.

Don’t EVER let anyone you know assume that all autistics are unable to feel empathy. Ever.

So Friday was K-day. Jack had his shoes on at 9:30 that morning, and by 11:00 had brought me mine. He was almost vibrating with excitement. He galloped around the kitchen, and Lo happily galloped behind him, both singing Today we go to Kindergarten! Today we go to Kindergarten!

(Well, you know Lo’s singing was unintelligible, but you could catch the drift.)

The following is the requisite first day picture. Alas, no Tinkerbell lunch box, b/c there is no need for it yet. But don’t think he didn’t try to convince me to use that instead of his backpack. (Lo apparently served as unofficial sherpa. Or maybe she thought we were headed back to Codoredo due to Jack’s excitement that morning. Either way she doesn’t usually leave the house with everything from her bed.)

As a way to transition to class and edge out the parents, the kids were supposed to glue a line on their names and stick pieces of cut-up colored squares to it. Part of Jack’s OT this year will be fine motor control, because he does have a tendency to either barely hold onto something or just squeeze the shit out of it. (Poor Oscar.) Tandy, his teacher, came by and tried to suggest dots after seeing his J, but Jack disagreed, and asked for the bottle back. Thus, BLAT, glue was everywhere. The kleenex in the picture was because he had drug his arm through it twice already. This is all in the first 3 minutes of getting to school. When we left Jack had squeezed out easily a fourth of the bottle of glue.

Godspeed, Tandy.

And that’s about it. My sweet fartknocker is officially school-aged. I am equally sad, and also wanting to dance on the table. Of course Kindy is a bittersweet rite of passage for everyone, but after the summer we’ve had, I think right now the table wins. I’ve said before that despite whatever instinctive philosophies I may have, the truth is, he needs structured school, and what it can provide that I can’t. I was reminded again that having all the love in the world isn’t necessarily enough, and I’m eternally grateful for what a blessing this school (and staff and kids and parents) has been for us. He is sincerely loved there, and everyone is doing everything possible to foster his happiness and learning potential. And really, what more could I ask for?

When he’s happy I’m happy.

Godspeed, Jacoby.

[Jack, hearing me say something to the computer screen under my breath.]

Jack: Who are you talking to Mommy?!

Me: No one, honey.

Jack: Why are you talking to no one?

Me: I was just talking, don’t worry about it.

Jack: Who were you talking to?

Me: I wasn’t talking to anyone, Jack. There is no one I’m talking to.

Jack: Who is the anyone you are talking to?

Me: JACOBY! Hush!

Jack: Okaaaaaaaaaaaaaay! Just stop talking about it!

These are more for posterity than entertainment for you all. (Though if you know Jack, these are much funnier when you can imagine his loud and fairly monotonous voice.)

Me: Hey, hand me the clicker so I can turn off the television.

Jack: It’s called a ‘remote’ Mom.

Jack: Look over there!

Me: <looking the wrong direction because I’m driving and didn’t look back>

Jack: <sighing loudly and patronizingly> No, honey, look at where my finger is pointing if you want to see what I’m talking about.

Jack: <yelling across pool (lifejacket strap snaps between his legs)> THIS SEATBELT IS HURTING MY P____ AND BOTTOM! I’M GOING TO LOOSEN IT TO GIVE MY P____ MORE ROOM!

Jack: <yelling across the pool after I’d hurried over to talk about telling me things quietly> HEY MOM I’M PRACTICING BEING QUIET. DO YOU HEAR ME PRACTICING BEING QUIET? DO YOU HEAR ME MOM? SHHH YOU NEED TO BE QUIET, MOM. YOU NEED TO PRACTICE BEING QUIET LIKE I AM. OK.

Having a blog is sometimes not unlike a diary (for some of us more than others), but mostly it’s an almost-daily calendar filler. What we’ve done, what’s happening in the world, who snotted where, blahblahblah. Sometimes it’s a chance to flex some narrative creativity – and those are my favorite posts, personally – but mostly it’s a happy presentation with moments of rawness written for catharsis. It’s been a year since I jumped to WordPress, and every once in a while, I re-read old stuff out of boredom. I generally stay away from the autism tags, but today I was shocked to discover how.. foreign.. it was to read the posts from last year. They seemed new to me, as if I couldn’t relate.

(Maybe I’ve got incredibly premature dementia. Which, I think I’ve seen a news report actually call that momnesia. Which is so irritating. Why does everything have to have some cutsie name – especially within motherhood? Whatever, I digress.)

Anyway, I found this one from last summer. Wow. I mean, of course I remember that, and yet it seems like eons ago. We still have communication issues (he answered a question about power lines with “fo shizzle my dizzle” last week) but NOTHING like we did then. And in honesty it hurts to read some of the old posts about autism, because it’s always in retrospect that I realize how survival-mode we were (are) in. But, I know it’s important for me to do, because I need the reminder of how far we’ve come. Yes, he still makes my eyeballs roll around in my head with his incessant (perserverating, nonstop, never ending and REALLY LOUD) chatter, but hell, today’s chatter is nothing compared to last year’s, and in a year it will have changed again. Most parents are sad about that; I’m rejoicing. That’s progress, after all.

And if I’m going to be even more honest, the truth is that his success is all him. I circle him to give him a safety wall to bounce off of, but his growth is all him. He’s developed astronomically this past year – with school, social situations, potty learning, reading/writing – and he has had to do it with an inherent roadblock of incomprehension, inability to communicate and bouts of severe anxiety.

As hard as this is for us, it has to be even harder for him, and I forget that a lot.

So I just wanted to give him some quick (and mom-cheesy, if not still legit) props, for all the times I’ve muttered (or yelled) how much I hate autism. Because really, I can’t. Without autism – and all its frustrations – I wouldn’t have Jack. And this kid is amazing. He’s stubborn and strong and more resilient than me most days.

Keep on keepin’ on, little man. I love you.

HEY MOM! MY PENIS GOT WET AND NOW IT’S COLD!

.

(Fear not. He said it two more times before we left, in case the new arrivals missed it the first time.)

Love. That. Kid.

So, this is the lunch box that Jack picked out in his excitement for school next year. It just makes me laugh, that’s all. But I’m all about being progressive, and he was incredibly insistent.

More power to you, my sweet, sweet boy.

ETA: I have no idea why the picture shows up intermittently. Fix it please, WordPress.


So. I’m thinking of nixing the YTT theme, b/c I have no idea if anyone cares. But, since WordPress took down the music application, it’s one of the ways to add music, so… eh. I’ll decide next week. Pipe up if you have an opinion.

And this week’s entrant is an older story. Back before Jack was verbal, I sang this song to him while it was in my rotation for a few weeks (substituting the words can’t take my eyes off of Jack for can’t take my eyes off of you). Months later, still nonverbal, he randomly hummed it to me one night, and I eventually figured out what he was singing.

It’s been our song ever since.

SO, in the off-chance this is the last installment, I might as well make it a tear-jerker, eh? Love Damien Rice, love the song ‘The Blower’s Daughter’ and love Jack. Huzzah. 😉

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