Autism

Autism Awarenesss: The Hard Days

Yesterday was perfect.

I took him to the zoo.

We didn’t have one meltdown.

He is learning to feed himself.

He only bolted while playing on the playground so, all things considered, totally manageable.

He tried to make friends.

He interacted with his surroundings.

He played appropriately at the sandbox in the dinosaur exhibit.

It couldn’t have been more perfect.

More calm.

More beautiful.

We’ve had so few of these outings over the past few years that sometimes I forget, or rather I don’t think about in clear, vibrant ways, that he is disabled.

Yeah, that word so many people don’t like: “Disabled.”

“Lacking in an ability.”

And let me be very clear, My Boy is the Shiz.

But there are things he can’t do.

And I know it.

But I also forget quite often what it’s like to stand him next to a group of children and “compare.”

And yeah, I think it’s an important thing to do.

I need a plan for him. I need to know how far we have come. How far we have left to go.

I need to know goals and what works and what doesn’t.

I need to see so I know.

I saw him running and flapping and doing his “scarecrow dance” onto the playground shouting “my friends are all here” and I watched to see if his simple joy was enough to make friends.

And I saw him playing along with the 3 years olds, mostly able to follow their lead.

And I watched them gang up to hit and kick him.

Was it his size? That he was so much bigger?

Was it that they couldn’t understand his speech or his behaviors?

I saw.

But I didn’t know what it was that I saw.

And then I saw him leave the toddlers, whose games and dances he understood, and I saw him approach the bigger kids his own age.

And I saw them decide to take him out, too.

And running, phone in hand and recording, I saw him.

As if his very existence was billboarding him as an outsider.

As bully-fodder.

As if they could smell him.

Or see a flashing light over his head declaring, “I am different. And vulnerable. Come hurt me.”

And their taunting punches and kicks landed softly, as if egging him on, and were met with his blank, thoughtful stare.

He was so present in that confusing, awful moment.

And then when the ring leader decided to go after him for real, with me running full blast toward them in the sand as slow as a dream, I saw My Boy punch that Kid-Bully in the jaw.

And when Kid-Bully stood stunned, I saw My Boy side kick him ninja-style in the hip.

And down Kid-Bully went.

And My Boy stared at him.

A blank, thoughtful stare.

Hurt.

And confused.

And later in the car I answered My Boy’s questions as best I could.

No. You are not allowed to hit.

Well, not hit first.

Yes, if someone hurts you it is okay to fight back.

Yes, you should come get Momma if you can.

No, you are not a villain.

I know it’s confusing.

I’m proud of you for defending yourself.

And I’m heartbroken you had to.

Why?

Why is a boy who hasn’t mastered potty training and doesn’t know his ABC’s having to learn how and when to defend himself?

Why!

Why is my Boy, who just wanted to make friends, unable to do so in a setting that should be so natural?

Why do I have to hover just to protect him?

I know why.

And it has nothing to do with “Autism Awareness.”

And it has nothing to do with “Autism Acceptance.”

It has nothing to do with special needs or childhood independence.

It has to do with them.

With the highlight-haired and meatball and coleslaw pita sandwich-eaters (ew) and coach diaper baggers standing in line for lunch at the zoo who think it’s okay to laugh and roll their eyes at the awkward teen girl who invaded their perceived “space” as she reached past them to grab a pudding.

It has to do with them.

The moms standing in line for the zoo train wearing their babies.

When their 3 year old points at my 5.5 year old and says “He’s in a baby seat!” And I reply “No, it’s just a stroller.” 

And she ushers her kid around the corner without correction or apology or even a glance to let me know she didn’t know what to say.

Because I know that’s what you told him, isn’t it?

Not considering the needs of others who will need strollers throughout childhood or adulthood, you told him that he didn’t need to ride in a “baby seat” today.

Because trying to foster independence you unwittingly, I presume, taught him that children with other needs are “babies.”

It has to do with them.

The mothers who let their kids mock and bully a child who acts differently and speaks differently.

Because “they’ll work it out on their own” is such a solid parenting plan.

And you could care less who gets hurt.

Until your child gets punched and side-kicked by the autistic boy.

And then you don’t like it, do you?

And then suddenly, in the flurry of emotions I can’t even name and the flailing scenes moving so fast my mind can’t keep up with my eyes, it isn’t about you it’s about us.

And it’s about the fact that I am us and you are them.

It’s about me realizing that raising your level of autism awareness isn’t enough.

Because there will never be enough autism awareness to make you move over so the awkward teenage girl, the only one in the group standing all alone in line, can grab her pudding without being visibly mocked by adults.

There will never be enough autism awareness to teach you that a simple “would you like to sit with us” could have taught others to accept and not reject the teen that was different from yours.

There will never be enough autism awareness to teach you that telling your child “a kid in a stroller isn’t a baby, he’s just a kid” would have made all the difference to the mother pushing the stroller.

Or to the kid in the stroller who understands more than you think, because his stroller doesn’t inhibit his hearing.

There will never be enough autism awareness to teach you that “they’ll figure it out on their own” doesn’t work when one of those kids perseverates on Ninjago.

And he knows the difference between playing and when he is being attacked.

And because we raised your awareness yesterday, didn’t we?

About autism kiddos and side-kicks and the autism Mom that video documents everything.

But it wasn’t enough. Was it?

All that autism awareness.

I know it.

And it hurts.

And it’s sad.

And I know, too that “Autism Awareness” can’t be “Autism Acceptance” until you are willing to be a kind human.

Until you are willing to practice “Human Awareness” and someday, if you possibly can, “Human Acceptance.”

Even if it’s just to help another mom have less of a hard day.

Even if it’s just so that solitary girl knows that people are aware she is just as deserving as the girls standing in line in groups.

Even if it’s just so you don’t underestimate the strength and the fortitude of that kid with delays as he takes out your son on the playground.

Even if it’s just to stop making everything them VERSUS us and you VERSUS me.

Can we start there?

Please?

So that sometime, somewhere, someday the perfect and beautiful day at the zoo will be less of a hard day.

For all of us.

#BeAKindHuman

❤️

#SpectrumMom

The Zoo Slide

There is beauty here.

It’s not that there are more hard moments than easy ones.Or more sad moments than happy.

Our lives have more laughter than tears.

More beauty.

And I still see the perfect and the joy and the progress and the gains even when there’s a struggle.

I do.

I think that’s why, even when it makes me sad, I can talk about the lows.

I’m not mocking our challenges when I do.

I’m trying to call our day as I see it.

Trying to be rational and honest about our life.

To be honest about things like getting frustrated.

So very, very frustrated.

Especially on days like today when I watch him struggle and struggle and struggle.

When all he wants to do is have fun.

And he struggles.

Days like today when I’m irritated down to my very core because life should NOT be this hard.

It should NOT be so hard for him to be surrounded by close family who love him.

I should NOT have to make decisions that keep him safe but hurt his heart.

Decisions like choosing to remove him from the party, from the company of the people he adores so he can have quiet time.

Because he’s melting down.

Because their noises and smells and movements and laughter, and even the excitement he feels because of his very love for them, are all part of his struggle.

Because he doesn’t know how to be a part of this group.

He KNOWS they love him

He knows he belongs to them.

He doesn’t know how to ever… Completely… Be… WITH them.

So tonight I am frustrated.

Tonight every ounce of my heart and soul wants to run away with him to a quiet place where we can live in a bubble.

Where, I rationalize, he can live as he would have a hundred years ago; without football on the tv and Christmas music playing and timers dinging and phones ringing.

Where there are no visitors.

Where there is silence.

Silence where the unchartable, hidden bubble in his brain that his tests label “nonverbal IQ” can take center stage and he can sit and create and build and plan.

Where everything that overloads him can fade away.

Where there are no demands except to be his brilliant self.

The way he is in the quiet of our rooms, when it’s just us.

But I am neither able to let him live in that fantasy bubble nor am I able to rationalize allowing him to be so entirely removed from the world.

Hidden away where there is no therapy or assistance or support.

No family cushion to lean against. And we desperately need a cushion.

So we compromise.

And days like today: gloriously brutal days where he is surrounded by perfect love and yet tortured by his challenges, are the best kind of compromise I can find.

So I let him enjoy himself as best he could.

And I saw the beauty in it.

And I watched him fall apart.

And I felt the sorrow of it.

And then we spent an eternity under blue lights in a darkened room.

And there was beauty there.

Squishing glitter slime. Pacing. Rocking.

And there was frustration.

Because we were necessarily relegated to the “corner” again because he was too much for everyone else.

And everyone else was too much for him.

But whatever the struggles, I am grateful for the celebrations we have.

I am grateful for the family who loves him.

Who watch him rock and listen to him scream… and hurt for him.

And wait for him to reset and rejoin them.

And love him even more for the hurting and the waiting.

And I am thankful.

So very thankful.

And yet, here in the dark aftermath of the holiday, I am still visualizing that bubble.

Imagining the escape.

And still, always, purposefully, staying put.

Always.


#SpectrumMom

Pic of my Boy hiding from the world.

With his cousin, unprompted, unschooled. Beautifully, successfully, trying to bring him back to us.

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. But incrementally. 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.
Pic of my Boy. At the party. In the nursery. Flicking the doorstop.

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.


#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.

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.


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

RIP London McCabe

I need to talk about this. I need to talk about this murder. I need to talk about this heartbreak.

I don’t NEED to judge her. A jury will. And everyone else. But I know that I also need to, instead of judging Jillian McCabe, spend my energy reaching out to other mom’s who have lost all hope.

Please hold on. Please, please, please. One more day. Make one more phone call. Please. Reach out your hand. Please

There’s always something to be done. Someone to help. Somewhere to go. Always. Even if you can’t see it. You have to believe. Hope.

As a group I ask this; let’s not condemn her. Someone else will have that horrible job.

Instead let’s talk about how she HAD been a patient. loving and caring mom. How her husband was dying. How she was facing homelessness. How she …. snapped…

And think about it.

I know humans are capable of horrible, horrible atrocities.

I know humans are capable of great beauty.

I believe humans are capable of being, and of creating, miracles.

I believe humans need help and prayer to be the better, and not the worse, of the race. They need support. They need hope.

So.

Today I pray for myself.
I pray what I always pray: that my fears never outrun my hope. And I pray a new prayer: I pray that I do not ever know the despair or brokenness that could drive a mother to do such a thing.

I pray for all of us reading about this tragedy.
That we use our sadness to motivate us, not our hate. That we open our hearts and our minds and look around us for someone who might need us. That we think of London and that our eyes are opened and we see those who are desperate. That we stretch our hands out to them, offering them a boost. Preventing another tragedy.

I also pray for other mothers headed down her path.
That you reach out, and find, a strong hand to pull you back up onto a better path. I pray someone makes you a priority. That someone is there for you.

And little London.
Oh. My heart is broken for you. I can only pray that your end was swift. That you are at peace. And that you have an endless, glorious supply of hats in your new home.

RIP London McCabe.

London McCabe. Lover of hats.

For more on the story:

http://www.kgw.com/story/news/local/central-coast/2014/11/03/woman-reportedly-throws-boy-off-bridge-in-newport/18446035/

Fears and Hope

My greatest fear isn’t autism.

My greatest fear isn’t DD classes.

Or wandering.
Or language disorders.
Or night terrors or meltdowns.

Or the restructuring of my dreams for our future.

My greatest fear is that I am entirely capable of helping him become one of the most amazing people I’ve ever known. But that I will fail him because I didn’t know how to do better than I’m doing.

That there was a better therapy, a better supplement, a better lifestyle. A better way.

My greatest fear is that all the understanding, patience, love and brilliance that he needs is all within me, and I don’t know how to tap into it.

My greatest fear is that I’m capable of being enough. I just don’t know HOW to be.

My hope is that by filling up our days with the kind of pleasant mediocreness I pretend would exist if he were NT, I am finding our way to that brilliance he needs.

So.

We shop in our pjs.
Because he has a hard time with clothes.

We share ice cream.
Because he hasn’t figured out how to lick the backside of his cone.

I let him carry baby toys around the store.

I repeat with him, line by line, his favorite movies.

I hold him in the tub when he’s scared of the water eating him.

We yell. We giggle. We tickle.

We cry.

 
And I spend my days with him chasing hope.

And outrunning fear.

May I be ever swift.

❤ Spectrum Mom

P.S.
Pic is my Boy. In his pjs. Hunting zombies. From the trunk of Grandma’s car. Which everyone knows is the best vantage point for hunting zombies.

Road Rash

Things have been going smoothly. Like really, really smoothly. We walk in to therapy. We walk out of therapy. He doesn’t bolt into the parking lot. He doesn’t bite anyone. Sometimes he even smiles at strangers. Sometimes. Ok, once.

A friend of mine offered to bring us with her to the Aquarium. What a blast. Right? Dark. Cool. Calm. Sounds like an outing we can mange, right? Right?

Oh no, no, no, no, no.

That would be incorrect. Not right.

He was so excited. He’s a four year old whirlwind and between his freckles and his giggles I forget. I forget that he just… can’t. When he whirls upwards the only way he can come back down is crashing. He doesn’t know how to just whirl back down and G-d knows I don’t know how to catch him. I try. I try as I sit on the bench and rock him. I try as I carry him as far as I can from whatever set him off. I try when I’m telling him what is next and watching to make sure he hears me.

And then I can’t anymore.

I just hit a wall. And when that little whirlwind crashes down onto the sidewalk and the screaming and crying tells me he can’t anymore I go autopilot. I pull or carry. But stuck on the goal of ”just get to the freaking car” I can’t seem to stop in that moment and help. I don’t know how to help. It’s 90 degrees and to my body that feels like 120 ( I mean really, that’s why we have air conditioning). I’m sweating. I’m seeing spots. My eyes are burning. And there he is on the sidewalk; prostrate under the 90 degree sun, back arched, tears streaming, sunglasses strapped to his head and monkey halter strapped to his back.

And he can’t and I can’t.

I can’t convince him that getting into the quiet car with lovely, cool air conditioning is better. That leaving is better. That going home is better.

He can’t hear me and process anything except that he’s done. It was too much.

He can’t.

I hate days like today. Days when I’m so excited to have some sort of human interaction that doesn’t revolve around autism that I push us both beyond our abilities.

I knew when he was on yellow.

It came fast and it came in a panic.

And I didn’t leave. I wanted to stay. So I stayed. I stayed til he hit red.

My poor little guy. I don’t want to say it isn’t fair because no one’s life is ”fair”. Living in this world comes with a ‘buyer beware’ tag that most decide to ignore as best they can, but it’s sticking out from every purchase. You can’t exchange your lot and I don’t think I’d want to anyway. I love my Boy. I love the freckles and the giggles. I love the lines of robots and searching for legos with a flashlight because that missing 1×1 Lego is SOMEWHERE.

I do not love 90 degrees on the sidewalk trying to drag a 40lb flailing ball of meltdown.

We’ve come so far. So very, very far. We have our routines and even the odd kink in the day doesn’t throw us off anymore. We just keep swimming. And our routine gets calmer and happier and we get to enjoy each other more and more every day. The past year we have seen beautiful things happen in our lives.

Life is good.

And then I go and figure that if he can handle a kink, he can handle a whole wrench thrown in, too.

But he can’t.

Not yet.

Maybe one day we can go somewhere new and I can visit with old friends and not worry about his halter or meltdowns. A visit where I can spend time oogling over her kids because I’m not on pins and needles waiting for mine to fall apart.

A visit that isn’t policed by autism.

But not yet. Not yet.

YET is the word.

Tomorrow will be a better day than today and tomorrow ”yet” will have more hope on it’s back than it does today. Tomorrow when I say “not yet” it will mean ”someday we will have this.”

But not today. Today it’s a little sad. Today ”not yet” has teeth marks on it’s arm and road rash on it’s bum from the sidewalk and a pulled back (on the right side, just below the ribs, thank you very much).

Today it thinks, “Maybe we will dig that stroller out of the garage.”

Today it realizes the stroller should have come out yesterday. Before the road rash.

Note to self; “Increased tolerance for new activities at home and increased pleasure in therapies” does NOT equal ”ready for an outing at a new place, in public, with new people.”

 

 

New Words

He spaces out.

We all know it. Me. The Grands. The Uncles. It’s just one of his ”things”.

We just wait a few seconds while his eyes grow wide and then one of us touches his cheek or says his name and waits for him to see us again.

Cuz he’s spacing out.

After all the exhaustive behaviors this has always been the least worrisome.

Until our (very nice) new Dr. Man addressed it. He was worried. His expression changed. He looked at my boy running around the office, flapping his hands and squealing. And Dr. Man said the word.

“Seizures.”

“Petit mal seizures. Zone out seizures.”

And that’s not even all of it.

All that screaming, chest arching, arm thrashing that has woken me up hour after hour at night for years? Maybe they aren’t night terrors after all. “Sleep seizures.” Who knew there were so many kinds?

“Have you had an EEG done? Do you want it set up right away?”

My boy didn’t become a different person with “autism, sensory processing disorder, impulse control disorder, AD/HD, speech disorders, neurological and musculoskeletal disorder” anymore than he did when Grandpa called him “B” instead of “Boy”. He’s the same boy he was before all those words came along; he just has more people helping him.

If only they ALL fit on that shelf! Problems, problems.

After almost five years into my adventure in mommyhood, adding one more log on the fire doesn’t really change much around here; Boy is playing Legos so I am pouring myself out to the internet. Same ‘ol, same ‘ol.

And tonight I will do what I always do at night when new words come into our lives, just as I have with the ones that have come before; I’m going to remember that new words are just new words, and we only need new words so we can address them and help my Boy get on with life.

So here’s to new words.

Name That Emotion

I’m not a crier. I don’t have anything against it, but in my own personal experience tears only flow when anger overflows. I never quite learned how to have that tummy-jarring, hand-shaking, strangle-an-apple anger without ending up crying. What can I say? I’m not a fighter. But otherwise? Crying? I just don’t really.

 I was thinking about Boy today. Thinking about how I don’t cry over his diagnoses. I didn’t cry about SPD, AD/HD, Dyspraxia or DBD-NOS and when the acronyms all meshed and flowed and settled on ASD like some overworked ouija board of acronym diagnoses I didn’t cry then either. That means something to me because, since I only cry when I’m angry, I’m therefore not ‘angry’ about his diagnosis. Right? What does that mean? Shouldn’t I be angry about it? Shouldn’t I hate it? Shouldn’t I be crying and shaking my fist at the evil autism fairies for striking my child? G-d knows how frustrating, tiring and helpless autism is. Being a spectrum mom ain’t a picnic.

 I’m trying to teach Boy his emotions. We still don’t have ‘sad’ or ‘happy’ down quite yet. Oh, he can name them on cards and point them out in a Disney princess, but naming his emotions we just don’t have. I got through to him one day though. Somehow the stars aligned as that venting, red little face tore through the back door and his eyes met mine ( aaaaaaaiiiiiiiii knooooooow, right) and instead of hitting, his little fists just hung by his side while he tried (apparently) to share some mental image with me via telepathy of whatever wrong had assaulted him. Like sunlight.Or leaves blowing. Leaves are a bugger.

 I pointed at his tummy and said ”That feeling you have right now, in your tummy, making you hot? That’s frustration. That’s when you tell me, “Mommy I’m frustrated” or “That makes me so frustrated.”

 Bam.

 Out. Of. The. Ballpark.

 If the kiddo is thirsty? Meltdown. Hungry? Meltdown. Sad, happy, excited, tired, etc to infinity? Meltdown. If he’s frustrated? “Mommy I’m so frustrated.” I hit that nail. On. The. Head.

 I taught him to name that emotion.

 It was only one.

BUUUUUUUUUUUUUT he has the name for his emotion. And in this kiddo’s life, frustration flows like water, so by all that’s holy I’m gonna polish that bad boy every day.

 Thinking about that, thinking about how I never cried over a diagnosis, I don’t cry at the end of a hard day, I don’t cry over him, I began to wonder. Can I name that emotion?

 It’s not anger. I know anger.

 What is it?

 I disagree with ehhhh… let’s pretend I know numbers… 50% of the other Mommy Bloggers; I say that autism is not a blessing or a gift.

 Autism is something that tortures my son, right? Keeps him from sleep and play and friends. It keeps him from learning to read and eating on his own and getting dressed. It prevents him from knowing what it feels like to run down a soccer field. Ha! Just kidding. No it doesn’t actually. He’s quite the runner, especially when I’m not looking. But it does keep him from playing soccer. Like, with other children.

 Autism sucks. I should hate it.

 So… name that emotion?

 What do I feel about it?

 I have a collection of paper growing for my little man. Every paper ever written about him is copied and organized and hole-punched and bound and waiting for the next time it’s needed. Now I want to be very clear; I am not Martha. You can’t walk across my bedroom floor without stepping on jeans, robes, blankets or socks, some of them worn, some of them tried on and promptly discarded, some of them just because they were in my line of site in the drawer. But if you need a document about Boy it’s all there. In chronological order. Color coded. In binders. What drives a person to do that? To go OCD on paperwork like that when she doesn’t even know if the renewal sticker made it to her car.

 OMIHOLYWHATDIDIDO. I don’t think the renewal sticker is on my plate. April. May. June. Oops. Um. Aww jeez.

 Ok. No. I just checked. I literally just took a break and went out and checked. APRIL 2014. This is June 2014. It came in the mail… I saw it… and that was most likely in April. But it’s not on my tag. GREAAAAAAAT.

 Ahem.

 Autism.

 So I’m a flake. But not with Boy. Not with anything about him. Speech therapy. Occupational Therapy. Physical Therapy. PCIT. Behavioral Therapy. This evaluation. That evaluation. Sedation dentistry. First step. First word. First meltdown. And on and on and on. I know it. Like driving to Taco Bueno Yum on autopilot I know it.. I know it all inside out.

 I don’t love autism. I don’t hate autism. Autism doesn’t make me angry. I think I just don’t really care about autism. I guess all ”autism” is to me is, well, the services and therapies we get because he has that label. Services I love. No. No, I don’t. I’d rather have play dates with another Mommy and sip Starbucks and get pedicures. But improvement from really great services by people who love my boy? I love that. Gratitude.

 And since I mentioned love; by all that is holy, I love Boy. And I think maybe that’s it. That’s what the other 50% of the Mommy Bloggers mean when they say they don’t want to kick autism’s butt. Maybe they mean “My child is my everything. And that label is just his paperwork. It’s not him. It’s his challenge. Like someone who is too tall or too short or too freckled.Only with meltdowns. Ha.

 At the end of the day, when my tired, sore self crawls into bed there is no anger or hate, there are no tears, there’s no venting. But there really isn’t any ‘autism’ either because ‘autism’ is the paperwork that I’ve sorted and filed already. It’s over there on the shelf where I put things I don’t think about until I need them.

  All there is here in this safe place we call home, all that is real in the quiet at the end of the night when I’m thinking instead of sleeping, is me and Boy. And if all that’s here is us, me and my Boy, then the only emotion I have here is love.

 So I named that emotion. The one in the pit of my belly that makes me a tiger Mom and a flake. Jack Nicholson-OCD-Crazy Eyes and a little bit shameless Ma Kettle.

 I’m me. But I’m ‘me’ fueled by love. A love that changes me into what he needs me to be, when and how he needs it. 

 Named. 1 job done. 10,000 left.

 So, goodnight.

 Goodnight, Autism. I realized I don’t care about you much. You’re filed with the other papers. Indifference.

 Goodnight my little boy. My Decepticon transforming in the living room. My frog catching man with a bubble beard in the tub. My snuggle boy at bedtime who smells like lavender oil and bananas. Love.

 Goodnight my love.

 Boy: I love you.
Me: I love you, too.
Boy, tell me about love.
Boy: Love is big stinky poo poo in the toilet because I eat so much food.
Me: Oh. Yeah. A big poop is always good.
Boy: Oh yes.