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.

GeeGeeGooGoo and Silas

We made it through the party.

We didn't rock it, but we made it.

We'll call it "survival."

I'll write about that another day.

When I've recovered.

Tonight I want to write about Silas the Boxer. Who my friends rescued years ago, injured and mistreated and unwanted. And who has been one of the most brilliant pets I've ever known.

Gentle. Patient. And absolutely in love with kids.

Even my kid.

Which is no small feat.

We've talked abut getting my Boy a therapy dog but, beyond the astronomical and painfully unrealistic costs, I'm a little scared.

Because I don't want to fall in love with a dog who ends up scared of my Boy.

Because that would be heartbreaking for me.

And it would kill my Boy.

Because one of the things he loves most in the world is animals.

Petting, feeding, holding, playing. Even the poop.

He LOVES them.

But he scares them.

And the more he loves them the more he scares them.

He's rough sometimes, but he's getting better. That's not the main worry.

He's a vocal stimmer extraordinaire.

He can squeak and squeal and make all kinds of lovely, happy, migraine-inducing sounds.

And that's just the happy noises.

And we all know he isn't always happy.

It bothers people. And it scares animals.

And it scares me to think of all those very legitimately frightening sounds frightening a dog. Especially a dog we got FOR my Boy.

A dog intended to comfort him and safeguard him who might end up flinching or withdrawing.

Maybe those fears are not really valid. Maybe therapy dogs can be desensitized to noise. Maybe they can learn to deal.

Maybe we'll find out one day.

But the saving grace, the reason the topic is even still on my mind and why we still throw the idea around with my friends, is because of Silas.

Because this rescued, previously mistreated dog has never flinched away from my Boy.

Never.

Not when he's shouting "gee gee goo goo diaper poo" in the middle of a room and flicking his hands. (I don't know. It's just a thing. I roll with it.)

Not when he's running back and forth like Speedy Gonzalez on crack.

Never.

And I'm not just thinking about it because we saw Silas tonight.

I always think about it.

And now I'm thinking about it even more because Silas isn't going to be around much longer.

Life is finite.

Even for dogs.

Even for the dogs that make you rethink what a dog is.

And what a dog can be.

Dogs that teach you that sometimes a dog is the best, sweetest, gentlest kind of friend you can hope for.

Dogs like Silas.

Who we are all going to miss very, very much.

<3
#SpectrumMom

Pic of my Boy laying on the ground. In the middle of a party. Surrounded by people.

So that Silas would come over and lick him.

Which absolutely worked.

Every time.

HO HO HO And A Dead Olaf

Have you ever thought to yourself, in a calm, logical prose, "What a cute setup! We should totally take an impromptu snapshot in front of this sweet backdrop. We can use this as a Christmas picture!"

And then did your autistic child in a frantic, nonverbal parody, ever shoot right back with "Oooooh NO SHE DIDN'T."

Welp.

Here is a snapshot of our "Oh no she didn't" moment at Target's Frozen backdrop photo op.

After my Boy knocked over the whole display.

And before he dropped to the ground and punched poor Olaf to death.

Ho Ho Ho. (Sobs)

<3
#SpectrumMom

#DearLordHelpUs
#AnyoneWantToBuyAGentlyPummeledOlaf?

Jell-O.

Because today he heard Grandma say the gelatin was on the same aisle as Jell-O.

And he'd heard of Jell-O before.

Somewhere.

I blame YouTube.

So Grandma made him Jell-O.

And he couldn't really manage to eat (new food alert) Jell-O.

So instead he licked it.

Peeps, we have so, so, so much Jell-O left.

Oh. And then he snuck into my room and chugged my kale juice.

Every drop of it.

Go figure.




<3
‪#‎SpectrumMom‬

Pic of my boy with his grandma. And Jello-O. And hands flicking so fast they're about to fly off.
Because he was THAT excited.
Oh. And proof he licked the Jello-O. Serious OT kuddos, kid. For reals.

The Hard Stuff

I'm a Mom. So I worry.

I worry about the gruesome death of a five year old by consumption of excess sugar and the vitamin deficiency of a broccoli-free childhood.

I know, right?

But some of the things I worry about are harder to pin down. And infinitely more terrifying.

Maybe NT Momma's worry about some of these things. Maybe every momma does.

But I learned for certain this weekend that my worst fears are shared by a great many Spectrum moms. So if nothing else, at least I'm not alone.

I attended an autism conference. My first.

And it was amazing.

It was also really, really, really hard.

Because some of my worst fears are already real life, actual, serious concerns in the autism community at large.

And isn't that awesome?

And isn't that terrifying?

Because whether it makes you angry or not, whether it scares you or makes you sad or not, many of the Spectrum Mom's fears aren't just "fears."

They are realistic concerns about the trajectory of some children on the spectrum.

Especially children, like my Boy, who come with an alphabet soup of diagnoses.

Fears that reach into the unknown, frightening, far off adulthood of our babies.

Fears that are shared by therapists and doctors and teachers. And other moms.

It's a bit overwhelming to hear your fears coming out of other people's mouths.

To hear their concerns about emotional connectivity and relationship awareness and ever-elusive, hard-to-pin-down concepts like life and death and love and hate and how our actions are connected to our feelings.

Or how our actions have consequences.

Or how those consequences can be harmful. To themselves. To others.

Concepts some of our kiddos haven't grasped yet. Concepts they maybe will, but maybe won't ever, grasp.

l know that all a Mom can do is her best. And I'm giving it.

Cuz this kid deserves everything I've got.

Not because he earned it or asked for it.

Not because I love him or he loves me.

But because he's here. His very existence qualifies him to receive the absolute best he can get from me.

I think more people need to remember that: he deserves it because he's here. It's that simple.

Loving him just helps fuel me to give it to him.

Well, love and life and the fact that he's very, very cute.

<3

#SpectrumMom

Our alphabet soup: Autism, ADHD, SPD, ODD, Anxiety, Impulse control disorder, expressive language disorder, receptive language disorder, articulation disorder, phonological disorder, global developmental delay, weakness of the musculoskeletal system....(more here)

And the cutest dimple you've ever seen.

Just one of the many, many, many awesome seminars from the conference.

Stimmy-pinching

My Boy pinches.

That's ONE of his "things."

He's improved the past few months to where now it's more of a conscious choice, or at least seems to be, rather than a compulsion or an outlet.

But that wasn't always how it went down.

His pinching started when he was still nursing and is actually one of the reasons we weaned when we did.

When my Boy was 16 months old and I was wondering if 3 was a good age to wean (you know, before preschool) he started pinching me when he nursed.

He'd get milk drunk and start pinching as he got sleepy.

I tried to stop the pinching.

I said "no" and moved his hands. It would be a fight.

I tried to give him a toy or a blanket to pinch instead. It would be a fight.

I tried saying "no" and stopping the nursing, not allowing him to nurse again if he pinched.

And that was how he weaned.

In a tug of war over pinching.

Because he couldn't or wouldn't stop pinching.

I'm not happy with how it went down, but really? It hurt like the dickens and I couldn't let him do it.

So we weaned.

And that's when he started pinching himself. 

He'd pinch his neck when he was upset. And it wasn't a friendly pinch either, it was more like he was trying to remove his skin. 

It was rough.

For what seemed like a long time.

But the severe pinching has long since transitioned to a gentle rolling of the skin between his fingers when he's relaxing.

Sometimes he says "don't hurt my baby" while he does it. Which was the only thing I could ever think to say when he was hurting himself. I'd touch his hand and say "don't hurt my baby."

I don't get many things right, but that not only got through to him, somehow. It really worked.

He totally knows who my baby is.

And he absolutely knows I don't want my baby to be hurt.

So the pinching isn't the scary thing it once was.

And it's so mild now I've presumed when it happens that it's habit and that he doesn't even really think about it.

I'm wrong so often. 

He absolutely thinks about it.

We were snuggling today and he was pinching and reached over and touched my neck and asked if he could pinch me. I said no and he got upset. He started to fight. 

He said he needed to pinch my neck. I insisted he couldn't.

We never did recover from that rejection today.

Some therapies teach that you should join in stims. That you should participate as much as possible as long as no one is getting hurt.

And maybe if it was running in circles or climbing or making noises or spinning Thomas's wheels I totally would have. 

But the pinching bothers me.

And I cannot wait for the million other things we are working on to improve enough that this no-longer-harming behavior can get some attention and I can get some guidance.

Because the last thing I want my Boy to ever feel is rejected.

But I gotta pass on the stimmy-pinching.

Gotta.

(Lets out a deep sigh...)

<3

Pic of my Boy, stimmy-pinching and snuggling with Momma-Crazy-Hair.

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