The party: part 1

So. 

The party: part 1.

Because my Boy at a Birthday party, at someone else's house, with 30 people, for 1.5 hours, deserves two posts.

Okay maybe more than that, but I have two started. 

Focus.

So we went to a party. 

And while the party was about a beautiful, feisty, blonde little princess, in my blog everything always ends up being about my Boy.

So... Him.

It wasn't the first party he's gone to, but as my Boy gets older these things get harder in a lot of ways.

In some ways they get easier.

Easier... He is less likely to take off down the street at APH (autism per hour, which is more voodoo than speed).

And fewer meltdowns.

And less violent meltdowns.

And... well... hmm.

Harder...Everything else pretty much.

His understanding of himself and the world is improving. Incrementally. Teensy increments. Which is just enough that now he is starting to understand that he doesn't understand. But not enough that he doesn't understand WHY he doesn't understand. And he doesn't understand why others don't understand.

Which is confusing. Right?

 

Everything is soooooo confusing for him. 

And he tries really, really hard.

He tries so hard that it hurts my heart. (If my heart is that big lump in my throat and that tingling burn behind my eyes.)

But no matter how hard he tries he sees things differently than everyone else does. Hears differently. Processes differently. Understands differently.

He is an alien, dropped involuntarily down into a foreign land, surrounded by people who don't speak his language and whose customs and rules and expectations and manners are all strange and confusing to him. 

So that's the vague forest view of where we are.

Tree #1: My Boy isn't unaware of peers. He wants to play with them. 

 Tree #2: He has no idea how.

   Tree #3: And he doesn't understand them. What they want. How they think. How they play. What they are saying.

     Tree #4: No social story can prepare for every possibility.

So.

He approached two boys at the party (which is huge, HUGE, HUUUUUGE. Can you hear the heavenly host of therapist angels singing?) who were playing with a giant red ball.

And in his robotic, memorized way in his awkward, adorable, lilting voice he asked "May I play with you boys?"

And one of them nodded. 

As they both stared.

Because what kindergardeners understand and see and process is enough to register that ''something'' is up but not enough to know or understand what that ''something'' is.

The younger one, who seemed about a year younger than my Boy (so maybe 4?) shrugged and started off on the rules of the red ball game.

Something along the lines of ''you throw the ball at the other kid and if they catch it they're 'it' and if the ball hits them but they don't catch it they're out."

And looking up and down and around in circles my Boy seemed to process "ball" "kid" and "catch."

And he stood between them, arms up, giggling in pure joy that he was playing with them while the ball went up and around and over and back and forth. And he continued to stand there, giggling. Arms up.

As the boys shouted directions at him, trying to help him follow the rules.

And so I bent down and tried to help break down the rules of the game to my Boy. Rules which, if we were home and quiet and he was ready to listen, were not beyond his ability to comprehend. Close, but not completely. But rules which, at the loud, festive party in a strange home surrounded by kids, were completely beyond him. 

Completely.

And then, without any animosity in his voice, Older Boy said, "That Boy doesn't understand what I'm saying."

And the Younger Boy said, "This Boy doesn't know how to play ball."

And my Boy, realizing he was somehow falling out of their graces and not understanding why or how to correct it, began banging his head with his left hand and pointing at them with his right shouting "Geegeegoogoo diaper baby poopoo."

And then he laughed his uncontrollable laugh. Which is not a joyful laugh. It is the laugh of stress and frustration that is an all-too-familiar precursor to a physical assault.

And I had to corral him into the birthday girl's nursery.

Which was the fairest redirection I could come up with. And still totally, completely unfair.

And he ran in circles.

And I tried distracting him with toys.

And he ran in circles.

And I tried to rock him.

And he ran in circles.

Until he sat on the floor, took a few deep breaths at my direction (which was a huge improvement; he was LISTENING to me), and then he started bawling.

"I want to playyyyyyy!!!"

He wailed. 

And he cried.

And he ran in circles.

And I knew if the conditions were different: if it were a playdate and the house was quiet and I could explain the rules and talk to the other boys and manage things, I might be able to salvage this.

And I knew that in a house filled with (mostly) strangers, with a party ongoing and everyone talking and kids playing with each other and, and, and... that wasn't possible. And there was no way to salvage this.

But I still tried.

We talked (again) about not using ''diaper'' and ''poo" and "baby" when speaking to other people.

Which didn't work because those are automatic and I know he is scripting and those are the words he has right now when he's overwhelmed or embarrassed and none of the other words I tried to give him worked.

"Friends" and "play'' and ''ball'' and, and, and, and... were just more noise.

And if he hadn't found one of those fabulous door stoppers that make the springing ''goinnnnnng'' sound, I would have lost him.

I know there are a million other ways I could have handled this. And I know my bag of tricks is smaller than it ought to be.

But I did my best.

And he did my best.

And we ended up in the nursery flicking the door stop.

And that, my friends, is part 1. 

That is 15 minutes (that took 2 days to write) out of our hour and a half at the party. 

A party that was, in meltdown terms: enormously successful.

Heck, a party that in terms of a moderately-severe autistic five year old attending a party at all, was a brilliant success. And I know that.

But in terms of enjoying a party: it was terribly, terribly sad.

Especially as I sit and listen to the new scripting that has replaced "Geegeegoogoo diaper baby poopoo."

The new script that I now have on a dozen videos, all very Rain Man in the 'over and over and over' manner that tells me just how much he understands. And how much he wants to understand. And how much he doesn't understand at all.

"That boy doesn't know what I'm saying. This boy, this boy, this boy, this boy."

Over and over. And over.

And every time he says it I see this... my Boy laying on the floor, flicking a doorstop. Wanting to be a part of a world he isn't ready for.

A world he is physically only a few feet and one closed door away from. 

And yet in every other way, still very, very, very far away.

And I cry.

Not because we have it worse than everyone else, which we totally don't.

But because he still has it hard. Really, really hard.

And I wish he didn't.

I'm sorry.

I'm sorry, baby.

I'm sorry that I couldn't give you the attention you desperately needed this morning.

I know you need more of your Momma than some 5 year olds do. I know you struggle when my attentions are divided. I know that isn't your fault or something I should resent. I know it's something I need to remember when I'm planning our days. But I messed up.

Momma's been messing up for a long, long time but I promise you, Momma is learning.

See, when all the smart teenagers and twenty-something's were going to college, graduating, getting homes and growing up, I was doing my own thing.

I was messing up.

I withdrew from classes if I didn't like the teacher. Or if I liked them too much. (Oh dear Spanish teacher. You cutie, you.)

I worked and worked and worked but more for the social interaction than to earn and save money. My focus was on talking and chatting and shopping and pretending to be a grown up, rather than actually growing up.

I was messing up. I wasn't learning anything.

When I finally found a job I was good at I spent my time lording that success over others in an I'm-the-queen-of-the-universe kind of way instead of keeping my nose to the proverbial grindstone and focussing on getting and being better.

I wasn't growing up, I was messing up. I wasn't learning anything.

When you came along, brilliantly and surprisingly turning my world upside down, I wasn't ready.

I've spent the last five years with you playing a viscous game of catch-up. Trying to make up for all the things I hadn't figured out about life before you came. About who I was. About who I wanted to be.

I started learning.

I went back to school. I learned to stay with the class even if I was up working on assignments at 3am. If you woke I nursed you while I typed. I learned to stick with it.

Then I learned to research developmental milestones.

And I learned what it meant if they weren't met.

Then I learned all about language disorders and fine motor skills and sensory processing and Thomas the Train.

Oh dear Lord did I ever learn about Thomas.

And then I learned about autism.

And I learned about you.

I still messed up but my messes were cushioned by you. By your curiosity and your hugs and your dimple. By your needs and your successes.

I'm still messing up though.

Sometimes I procrastinate. Sometimes I think about myself more than you.

Sometimes instead of stopping to think about what it is I have learned and what I should be learning, I mess up.

That's what this morning was all about.

You needed my attention. You asked for my attention. You begged for my attention. And then you GOT my attention.

I messed up. I didn't put you as a priority when I was busy procrastinating.

When my other responsibilities reared their ugly head this morning, your still-messing-up-Mommy had to fix it.

And I learned from it.

I learned that every time I mess up it isn't just about my fixing it. It's about me and you and us and our time together that I'm compromising. That my reliance on the adrenaline of procrastination and impending deadlines HURTS you.

I messed up. And I learned from it.

But I'm going to mess up again.

I'm going to forget something important or say or do the wrong thing or make a mistake. But I promise you that I'm going to keep learning from it.

I'm going to keep learning how to be a better mom.

A better woman.

A better human being.

Because of you.

<3

P.S. Pic of my boy hunting zombies yesterday in the sunshine.

When he had my full, undivided attention.

P.P.S. Written while I was at the Drs office. NOT ignoring my Boy

Eclipsed

My Boy's language development has hit a bump.

He was making progress with his 'wh' questions in language therapy. Really awesome. He had finally figured out that a question is a prompt for an answer.

No, he doesn't differentiate between who/where/when/how unless the subject or object implies a certain response. But the Back-and-forth of questions is a big deal for us. Very big. For a little boy who acknowledges his name 20% of the time to take questions as a prompt for conversation... is just... wow. I guess unless you've lived it you can't quite understand.

It's had us all in giggles.

Then suddenly last week we noticed something was wrong.

For all of last year and part of the summer he worked on prepositions. On. Under. Over. Behind. Paper prepositions came easiest. Pictures. Cutouts. Drawings. They came first and rooted the strongest.

Then we made our way up the ladder. Paper laying down may imply different prepositions than paper on the wall. "Under'' moves, you see.

Then there are prepositions with objects. Putting the tiny Lego Michaelangelo behind the 3-D Lego house is a whole new perspective. Did you know it was this complex? It can be. For a child with language disorders these nuances that other children just naturally absorb... don't always absorb.

And then there's the belly whopper of prepositions. 4-D relational. The toy is behind him. Behind. HIM.

That was tough. Behind him wasn't a general area. It was a mystic place in the sky. One that evaded him as soon as he turned around until he was just turning in circles. Where was this curious place we hid his toy? He would be so confused.

It was funny when he was 1. It was hilarious at 18 months. Not so much at 4. When you know it's a problem.

But this summer before he turned 5 he started getting it. Finally. We could direct him verbally to an object he was looking for and he could find it!!! Pride in a child's accomplishment may be a bit different for a Spectrum Mom, but it's still pride in a child's accomplishment. Hard. Earned.

And so we moved on to 'wh' questions. The bane of so many spectrum families. And he just started sailing through them.

Cue angels singing.

And that's when we noticed. He lost the prepositions. He totally had them. He HAD them. A year and a half of work and he HAD them. And then they were gone. Not completely but so much so that I could feel myself physically shrinking under the worry. Some of his expressive prepositions are there still. The simple ones. Sometimes now he will understand receptively when he is asked to perform the expressive 'put this on' something.  The rest? Gone.

It's okay to feel that Wonder Bread knot in your throat choking you now. I know I did.

And since I'm always afraid of being that skiddish/paranoid Mom I asked Grandma if she noticed. She had. And was worried, too.

So yesterday I was hitting up the SLP's with questions. Getting tips. Reeling in my connections. Panicking. Trying to break down possibilities. The causes. Track the next steps. Worried. Panicked. Scared. Overwhelmed. Sad. Panicked. Did I mention panic? It's a great one when anything resembling regression or loss of skills pops up. Just. Great.

And then I had to go to school, because that's what I do. And I'm sitting there in class trying to listen, trying to pay attention. Trying not to be distracted by anything and everything. Because it only takes one little chip off a porcelain cup before it starts crumbling. And my attention is fragile.

When it was time for the eclipse, I was grateful for the break from class and I ran outside to look. I blinked. I looked. My eyes watered. I blinked and looked again. Until I could see it. There was this tiny little bit of rock (aka the moon) blocking out a part of the sun.

And here's where I'm about to get profound thoughts.

Where I stand there realizing that the moon can only block part of the sun because it's closer to us. Because that big, freaking ball of fire in the sky could swallow the moon WHOLE if it was actually next to it and we wouldn't even see it go.

And I thought about the sun. How I don't run outside to look at it and marvel at it and stare at it until my eyes water and my head aches. Ever.

Yet there I stood. Staring at the eclipse.

Because, from my view, a huge chunk of the sun was obliterated by the moon.

And I realized that's what we have right now. With my boy.

An eclipse.

A small, tiny thing in our lives was taking the glory that IS our lives away from me. The glory of him. The brightness of all the amazing things he has done and accomplished. The awesomeness of his determination. The strength of his will. Him. My sunshine.

Preposition loss eclipses 'wh' questions. Eclipses him. My son.

And my profound little mind decided that our eclipse was just a thing to look at. To notice. To address. To work on, yes. But not to be more than that. Not to panic over. Not to see instead of him.

I could either focus on it or focus on the sun.

So here's to sunshine.

G'nite <3

Ecliiiipse.
Not that you can tell from the pic. But I could tell. Because I looked at it. 20 minutes before it was safe . Because I'm a rebel.

#Eclipse.