Month: November 2014

Games

Games.

The best and worst part of our holiday.

Because last night the fam was playing Monopoly.

And for the first time I can recall, my Boy was COMPLETELY left out.

They tried to let him move some pieces but of course that turned into assault against the board, confusion, screaming, failed redirection and bathtime.

We salvaged it all by promising a family game of CandyLand at breakfast IF he went to bed.

Which he did.

And IF he ate some food.

Which he totally did.

And he woke up this morning bright-eyed and bushy-tailed and ready for games.

So I prepared everyone as best I could over breakfast.

Rule 1: We don’t go backwards. Ever. There are no punishments IN the game. Only rewards.

Rule 2: Only primary color moves. No extra details or complications. Please, please, please.

Rule 3: State clearly whose turn it is and involve Boy so that we don’t lose him. Or the board. Or our sanity.

Oh.

And by the way.

We’ve never made it past 5-6 moves before, so don’t have expectations of finishing.

And prepare for a meltdown when he’s tired of taking turns.

And… Yeah.

And then,

Gloria in Excelsis,

he played the game.

AND.

FINISHED.

He got the thing he wanted most yesterday and couldn’t pull off; he was part of the group.

With a role that he could play out.

This pic is a keeper for social stories and picture frames.

A goal for future get togethers.

I could cry.

Or laugh.

Maybe both.

It really is the tiniest things that bring the big feels, isn’t it?

I mean, he even cheated.

Poor Grandma, original winner.

We didn’t know only the blue piece was allowed to win.

New Rule #4.

According to Boy.

Ha!


#SpectrumMom

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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.

Being Thankful

Being Thankful.

I don’t do the thankful posts as a rule. Not because I’m NOT thankful, but because I’m thankful for so much every day that it seems odd to point it out and never fully be able to express that thankfulness.

I mean, I’m thankful for toilet paper. So, so, so thankful. But how do you sum up all the emotions you feel about toilet paper. And indoor plumbing.

I’m also thankful for coffee. For. Reals.

Coooooffeeeeeee.

And Outlander. Oh yes. Which means I am also thankful to Claire for introducing me to Outlander.

But the really, really big thankfuls that I need to write, facebooked and broken down for your newsfeed pleasure, just aren’t enough somehow.

I do though, think I should try. I think that I should try to say ‘’thanks’’ to the people who’ve helped me get here.

Because there’ve been a LOT.

I am not an island.

And while I often wonder at how I’m going to make it or where I can find more help or why our lot is rough, I could NOT smile every day if it weren’t for the amazing, marvelous, special people who have been a part of my life.

I know for every one that I thank I will be missing ten more. But I have never forgotten the kindnesses shown to me. Never.

And while I stop to say ‘’thank you’’ to these people that most of you don’t know and will likely never know, I also want to say that I hope and pray that each of you finds as many, or more, people to be thankful for.

I pray you are never an island.

So…

Thank you Ms. Sally, for listening to me vehemently spew retellings of my Boy’s behaviors. Thank you for being the first professional to reach out and help my Boy. Thank you for helping him find his voice.

Thank you Ms. Morton, for telling me in a blunt, straightforward manner, that I could do this. That I wasn’t the first to do it. And that it was all going to be fine.

Thank you Ms. Kelly, for teaching my Boy that it was safe to play with someone other than Momma.

Thank you Ms. Karen, for laughing with and at my Boy and teaching him that ‘’work’’ is fun when your teacher cares about you.

Thank you Ms. Christie, for always finding my Boy’s dimple. No matter how long it took.

Thank you Ms. Melanie, for listening and for watching and for telling me I’m not crazy. Or.. well… did you ever say that or just imply it? Or just shake your head? Oh well, that’s what I walked away with. Ha!

Thank you Ms. Ro, for being the ‘’lipstick lady’’ that my Boy can’t wait to see. Thank you for the pretend play bursts.

Thank you Ms. Kassie, for being a light when everything seemed dark. And thank you for the squishing and the squeezing and the swinging that have made our lives easier.

Thank you Dr. Yetter, for listening to me and hearing me. For looking. For watching. And for acting. Thank you.

Thank you Grandpa Nut, for telling me I wouldn’t drown. That I wouldn’t be overtaken or swept away. That I would make it through. Because when you feel like you’re drowning, a loving voice reminding you that you won’t can do powerful things.

Thank you Kaysie, for being an empathetic voice of reason and a wealth of knowledge and resources. Oh, and thank you for the Sonic Limeade. It totally made my day.

Thank you Aunt Sharon, for bringing over cookies just in time to drive me to the hospital and for staying to welcome my Boy to the world. But.. um… sorry you had to see that!

Thank you Alison, for the pics of my Boy’s birth. I look at them every day. They remind me that at the scariest times I have always been completely surrounded by love.

Thank you Emily and Valerie, for holding my Boy when he took his first look at the world.

Thank you Andrea, for holding my hand.

Thank you Johnny, for teaching my Boy how to catch a ball and chase a frog.

Thank you Jamie, for helping me through that first week when the world was entirely too heavy for my shoulders.

Thank you Bubby, for being that safe, warm place my Boy can rub his nose into. Sorry about your shirt… but thank you 🙂

Thank you Nik, for being that constant, steady and straightforward man that my Boy can look up to.

Thank you Dad for cashing in your retirement so that I could have a place to live and raise my baby and thank you Mom for flying out to bring me home. And for being strong when I thought I was falling apart.

Oh. And Mom and Dad… thank you for every day since.

And my Boy, my Master Builder, my bullfrog in the bathtub, my Mr. Bubble Beard, my snuggler, my reason to strive for awesomeness… Thank you.

Thank you for everything.


#SpectrumMom

#Thankful

P.S. Pic of Mr. Bubble Beard.

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.

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.


#‎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.

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…)

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

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My reaction to finding out my kids are Autistic? Relieved.

It was a relief for me, too. Good job, Momma ❤

My Crazy Little People

I’ve heard horror stories about Parents getting their Autism diagnosis for their kids, but for us it was a different story.

Looking back, I can’t tell you exactly when my kids regressed. I wasn’t looking for it. I had Tyler two days before Justin turned one, so to say I was distracted was an understatement. I tried my hardest to juggle between the two, making sure to read with them a few times a day, floor time, taking walks and talking about everything (now we’re putting on your shoes). Trying to split my time between both of them. They both progressed with the “normal” time frames for milestones.

It wasn’t until later that I could look back and see that they both regressed somewhere between a year and a year and a half. They slowly started losing language, becoming more rigid in routine and preferences in movies, food, toys and…

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