Because, ornaments.

Happy Christmas!

Early.

Because there may not be ornaments left on the tree by Christmas.

So I'm taking pictures now.

<3
#SpectrumMom

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.

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.

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.

Oral Stimming

I made this for K.O.

Downloadable .pdf  ''Chewing Gum Is Fun'' social story. Gum is a great idea for a socially acceptable alternative to certain oral stims.

Print this off, let your child color it while reading it together, laminate and bind and you have a handy guide to the rules of chewing!!!

Thanks for the idea, K.O.

I hope this works for you!!!

https://drive.google.com/file/d/0B-iqosn6ny4ZWE9oUmVlcElGYU0/edit?usp=sharing

Chewing Gum Is Fun!

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.

Welcome To The Spectrum

    We didn't actually just arrive here. We've been here the whole time, but our immediate family was the only group who knew it. Oh, there've been the few, wonderful/amazing/supportive therapists along the way who knew that we were here, and who bravely helped us find our way. The rest ... not so much.

     He's four and a half. Well, almost five. And when he was two weeks old I was already staring at him wondering what was wrong. At two weeks old I was told it was the crazy-mommy-baby- hormones talking. At two months, still baby hormones. At one year, paranoia. At two years, low thyroid. At three years, still paranoia and Xanax might help. At three and a half, someone finally watched the videos and listened to me. At four he finally started receiving services. A lot of services. At four and a half I finally got a diagnosis that made sense.
     It's three nights after my one-on-one with the PhD. The one who came as close to understanding him as someone possibly could after two days in a locked room with my boy and his Legos, watching him stim, watching him run around the room in circles, try to escape the exam room through a window, giggle at the Play D'oh ... and listening to him scream when they pulled me out of the room to fill out forms. There aren't any more tests to run at this point. Every inventory, assessment, diagnostic schedule, observation pattern... they've all been run and I have a 4-inch binder where I keep them like some sort of golden trophy, hole punched and sorted and waiting for someone to try to tell me, once again, that it's all in MY head.
     Even now, after all this time, I don't understand. Why would anyone, let alone a medical professional, tell a parent they were paranoid, overly worried or depressed instead of just sending the kid out for an eval? I look back and I can still see him, running around the exam room of our (former) pediatrician's office, touching everything, climbing on everything, not making eye contact, not responding to questions. Just running in circles giggling. She looked me in the eye and said, "He's perfectly fine. You're worrying too much."

The 4-inch Dx stack says differently, my dear indifferent Dr.

299.00 Autism Spectrum Disorder; Requiring very substantial support.
312.9 Unspecified Disruptive, Impulse-control and Conduct Disorder (R/O)
314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly hyperactive/impulsive presentation (R/O)

...Dyspraxia... Dysgraphia... Sensory Processing Disorder/Neurological Sensory Differences... Poor Muscle Tone... Abnormal Gait.. Receptive Language Disorder.. Expressive Language Disorder... Phonological Disorder... Articulation Disorder... Fine Motor Difficulties.... Normal Vision... Normal Hearing... Impaired Verbal IQ... Average Non-Verbal IQ...

     I've been told

     He also giggles and hugs and smiles and runs in circles and finds joy in everything from pattern walking to popping Legos on and off over and over and over and over.... So I don't care what the diagnosis is. I only care about the help he's going to get, the services and finally... after four and half long years... fewer people looking at me like I am out of my mind. Maybe. Maybe they will see him in his monkey halter, wearing footie pjs and giggling or, if we are at the grocery store, tantruming and screaming like he needs an exorcist, and think I need serious Mommy-intervention.
     But the ones that matter, the OT's and PT's and SLP's and Behavioral Therapists... they will look at the papers in their hands, usher us in the door. and we will start fighting as a group what I've been fighting on my own for a very long time.

   I hope.