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 manage, 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 1x1 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.

Thanks for listening,
Spectrum Mom

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.''

Buried treasure

There comes a time in every rightly constructed boy's life when he has a raging desire to go somewhere and dig for hidden treasure. - Mark Twain

For every moment that I can look at him and say, "That's the autism" there is another, glorious moment where I can look at him and say, "That's my boy."  ~Letters From A Spectrum Mom

"Dare is buried tweh-zure some-whey-uh!"

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!

"Momma, can I have a candy stick like a hamburger?"
Um. Huh?
"It is a cheese stick in the box. Come on I will show you at the garage sale."

#HeWantedAnIceCreamSandwich  
#ButWeWereOut
#PlanB
#icecreamonastick 
#GarageDeepFreezer
#autismspeaks
#figurethatoneout

Letter A

We've had some success with the ''type it yourself into YouTube'' practice so I pushed the envelope today.

Play D'oh lettering.

Most Pinteresting Mommies know this one, but my guy hates letters. He does love him some Play D'oh though.

Well, now that he knows LETTERS = YouTube cartoons, he's a smidgin more pliable. Just a smidgin.

But here's the growth factor from the above little factoid that really blows me away; my Boy doesn't understand why we do things. Curse those "wh" questions!

But really;
 "Why do we wear shoes?"  Shoes and socks on feet.
"Why do we eat?" Apples and banana peels.

That's our language reality. So....
"Why letters?"  So that I can find my cartoons on YouTube like a big man.

Window. Opened.

Why answered.

Welp.... I jumped all over that like hotcakes. Spectrum Mom + Pinterest = Homeschool success.

Here's to ONE letter of success. One letter? Yup!!! I'll take it!



Hi there, Momma 'A' and Baby 'a'. How you doin'? (If you didn't read that in Joey's voice, you're doing it wrong; click here to become edjumacated: https://www.youtube.com/watch?v=YjQ1xD6UL-4  )

Lovely free printables found on Pinterest via http://www.123homeschool4me.com/ . Printed, added to slickies and put in 3 ring binder.

BAM!

'A' is for "ausome".

Lettering

So here's an updated version of our typing project. Boy added ''Lego'' as something he wanted to watch on YouTube. Good call, my Boy.

So here is a .pdf template and I will post pics this afternoon of his typing prompts. Heeeeeeeeeeeee

https://drive.google.com/file/d/0B-iqosn6ny4Zekg1NU51SlEwWkE/edit?usp=sharing



If you're new here and have no idea what I'm talking about, no worries. Click here and catch up!
http://spectrumletters.blogspot.com/2014/07/momma-letters-baby-letters-and.html

EEG update; To be or not to be... it's up to us.

Ok.

So according to the neuro #2+++ "idiopathic staring spells" are common in severe autism and the prolonged episode we experienced after his EEG was not a seizure but rather my Boy's brain shutting down from over-stimulation. Which is the OPPOSITE of a seizure. Okthen.

He felt that Boy's "autistic spells" are mild enough in nature as they occur in daily life that they can be accommodated (rather than medicated) and that it is up to us whether we want the 24 hr EEG. Yeah-NO.

Because of the severity of my boy's autism** (**Cue Boy hiding under exam table and growling) he said that if we decide to do that he would like us to go to the epilepsy center, but again, because they are short and mild in nature, they would likely choose NOT to treat medically, even if the diagnosis were epilepsy. Which they can't be sure it is. And can't be sure it isn't. Got that? Good.

So that's a pretty firm yes/no/I dunno accompanied by a very adamant "move forward with life as you're doing it".

Additionally, (because there's always more and it's always an after thought) previous Drs who were unable to elicit post-rotary nystagmus and patellar reflexes may or may not have been incompetent. I didn't share this diagnostic opinion with our pediatrician (who rotated under neuro #2) when we updated him yesterday. I'm thoughtful like that.

So.... odd reflexes that come and go? Who knows. Epileptic? Who knows. Idiopathic staring spells are 'best guess' by a highly revered Neuro? Um... ok.

On with the show.

#EEG

#SunnyDayBeatsTheEEGBlues

#Jeez

 

+++Neuro #1 said that despite his obvious Challenges (cue Boy licking my shirt and rubbing his teeth on my arm) we are doing an amazing job and to keep up his therapies.

Momma letters, baby letters and squeakless learning.

Writing his name is coming along. Slowly. Very slowly. Painfully. Slowly.

So slowly that I've learned something new; Letters are not writing.

I am just starting to wrap my brain around this.

Letters are not writing.

Letters are the base of the pyramid of written, typed and most other non-spoken forms of communication.

Writing involves fine motor skills and squeaky sounds on delicate paper.

Letters are not writing.
Typing is not writing.
Writing is not reading.

And which do I want more? Writing or reading? 

So we are taking a mini-break from writing to learn letters. Not A is for Ant because Boy couldn't give a Hootie's Blowfish about Ants or Aunts or Alphabets. And no, he can't sing the song. So I'm trying a work around.

He learned the letter 'H'.

 "It's a line (finger down his chest) and another line (finger down the other side of his chest) and a line (finger across the middle). That is Hero Factory."

Ahhhhhhhhhhhhhhh....

Light bulb moment. I love light bulb moments.

"Yeah. That's called an 'H' and 'H' is for 'Hero'."

Now he's telling everyone. Our world is the letter H.

So progress a few to rainy day/not enough to do/Youtube day/Momma's beat day.

"What do you want to watch?" YouTube, I love/hate you.
"Hero Factory." Of course.
"Ok." (Starts typing)
"NO! I will do it! I will type it." (proceeds to find iphone's mini letter 'H').

Spectrum Mom mind blown.

I tried to help him with the rest but E & R.... they don't mean anything. They are rambling sounds that his little auditorilly challenged self just can't grasp.

Ok. Open up your brain.... think...

"Boy, what shows do you want to type into Youtube?"

"Hero Factory. Mixels. Thomas."

Type it up for him. Print it out. Let him follow the letters like he follows his Lego directions.

Problem solved.
https://drive.google.com/file/d/0B-iqosn6ny4ZcEtjb0NsNVRpb2c/edit?usp=sharing

I thought.

But typing in himself he noticed the 'E' he typed came up on Youtube as 'e' and we narrowly averted a meltdown.

Ok. 

"There's a momma letter and a baby letter for each letter you type. They sound the same and they build the same words. You might type a momma and baby comes up. That's ok. They're the same letter."

Got it.

Problem solved version 2.
https://drive.google.com/file/d/0B-iqosn6ny4ZQ3Y4ZmRPU1lucUU/edit?usp=sharing

If any of your kiddos are struggling, I hope you give this a try. It took me about 5 minutes on a computer doing pic searches for Google and copy/paste. Let me know if it works for you!!!!

Welcome to Cybertron

I just helped a random mom pick Diesel 10 out of a line up. 

And I realized our Thomas days are gone. 

3 years of Thomas. All day. Every day. Until the shift.

It's been 8 months now of transformers. Optimus Prime. Megatron. Bumblebee.

No more Thomas.

At two he called him "zha zip." (Language has never been his strong suit) He loved the trains, but if you showed him a Thomas movie he would hit the tv. No Thomas movies for him!!

At three all questions were answered with "choo choo train caboosie." 

How are you? "Choo choo train caboosie." 

What are you thinking about? "Choo choo train caboosie." (Generative language marked by perseveration. Say that three times fast eating Cheerios.)

Thomas movies became the end-all/be-all of life. On repeat. Autoplay. 

Then we made some progress; 

What do you want to eat? "Thomas eats coal." (WH-questions!!!!)

Then, one day, Thomas was gone. He slipped into his cave and Little Jackie Paper moved on to other things.

Change doesn't come often in our home. And when it does it rarely does so peacefully. But Thomas? He just up and vanished. Gone. Quietly.

As far as Boy was concerned, anyway.

Thomas is still here with me. Reminding me of the little boy who opened and repackaged his trains over and over and over for days after he got them. Who poured over the train inserts until they were soft and delicate like tissue. Who spoke with a robotic lilt about Thomas. And trains. And caboosies.

Edward, Gordon, James, Percy.... 

Thomas haunts all pre-diagnosis, frustrating, terrifying, beautiful and enlightening memories of my toddler Boy. Memories I pour over as I lay here, labeling trains for a Facebook stranger as she returns them to their original lineup before morning. I try as well as I can to mark the importance of their names. Of the importance their placement has to her son. Of the importance of ... Them. But I can't do it. I don't have the words I need. The words that say;

 "You will miss Thomas."

" You will miss train lines that run the length of your house. "

"You will miss the moment your Boy teaches you the difference between Diesel and Diesel No. 10; because trust me, there is a difference. "

"You will miss this when it's just a memory. "

Memories that remind how fast even these long, redundant, consuming, autistic days actually pass.

If only I had the words.

But the right ones don't come, so instead I dwell on Boy.

How I mark the days; recall his phases by toy obsessions. Track his language process by things with wheels and motors. Log developmental markers by the toy aisle we shop.

There are worse ways to log memories. 

I hope Random Mom gets it.

#GrowingUp

v40.31 ; Wandering under the diagnosis of Autism Spectrum Disorders

Wandering. It's kind of a calming word by itself. "To wander.'' To aimlessly stroll without care or concern. Weightless. Worry free.

ICD-9 codes change things. They can, by their neatly organized placement in the DSM, suddenly change the very meaning of words.

Because the ICD-9 for ''wandering'' (v40.31 secondary diagnosis to Autism Spectrum Disorders 299.00) is not worry free. It is not weightless. In fact, of all the numbers tagged onto my son's electronic existence, this is the one I hate. If he wandered I would still hate it, I'm sure. But I hate it most because he doesn't ''wander''. He bolts. Technically ''bolting'' or the ''atypical fight or flight response of a child on the Autism Spectrum''. It is the scariest, maybe the only truly scary thing about our journey through diagnosisland. These diagnoses, the words, their meanings are all arbitrary. They don't mean to anyone else quite what they mean to me. Most of them are just labels. Scotch sticky labels on a box or binder where I keep his what-have-yous for our seasonal updates.

But bolting means something more. It isn't just a sticky label. It is frightening. Terrifying. It makes me feel helpless.

I've never lost him before, but it's always been coming. He's never been in (or near) harms way, but it's always been just around the corner; waiting for me to look the other way, to bat an eye, to miss a step.

v40.31 is a little dagger just waiting to cut.

He's almost five years old. Most five year olds play t-ball or ride their dogs around the back yard or put firecrackers inside of frogs to see what happens (yes). Mine goes to therapy. Occupational Therapy. Physical Therapy. Speech Therapy. Behavioral Therapy. Animal Therapy. Water Therapy. And every one of those scheduled, planned events comes with a qualifer; he bolts. He panics when he leaves the car. When one therapist tries to walk him to the next one's office. When a child he doesn't know is playing in the waiting room. When Momma leaves the room. Or the car.

He bolts.

There is something in the anticipation of  the transition that his little mind, bent on the all-consuming comfort of routine and predictability, cannot tolerate. And he bolts. Like a teenager being chased by a knife-wielding maniac, he just...takes off.

I used to put him in overalls. They were like built in handles for grabbing the bolter. But dad-blast-it he outgrew Thomas. So now we have graduated to a monkey; I used to say I would never put my child on a leash like a dog and now by-gawd give me the freaking leash.

Mr. Monkey working hard.

Today he didn't have Mr. Monkey on. He was in the car. In his car seat. He was fully harnessed. A/C running, door cracked while I made my heck-of-a-sale from one of those swap sites on Facebook. (Have you tried that? I can sell anything on those sites. I've seen people sell used shampoo bottles. It's like garage sale heaven.) So this transaction takes MAYBE ten seconds. I stand up out of the car, hand my gently used item to would-be buyer, take money and BAM.

It's like someone hit me with a baseball bat.

I see, out of the corner of my eye, Boy running by me full blast. Right through the gas pumps (I was parked up by the door so by the time I realize this is MY child, he's a solid 30 feet away and running hard) headed for the grassy knoll beyond. Grassy knoll; otherwise known as a median. Like.... the BORDER OF THE HOLY FREAKING HIGHWAY.

Some blonde angel in scrubs and diamonds jumped out of her Mercedes and grabbed him as I was running, gasping and screaming bloody hell at my 4 year old to come back. Which was hilariously silly because he doesn't respond to yelling or his name being called so I was really screaming just so people would stare at me like the moronic, helpless mother I obviously am.

I'm still see spots in front of my eyes.

Thank G-d in heaven she was blonde. And pretty. Boy loves a pretty girl. So when she grabbed him he looked at her with a smile, fully under the impression he had nowhere else to be. She followed us back to my car and from the expression on her face and the scrubs she wore I expected something worse than what I got. What I got was an absolute gift. She stood there while I potato-sacked my kid into the car (giggling and squealing because who doesn't like to be tossed into the car like a sack of potatoes by a Momma who's hyperventilating). She stood behind my car. Looking at it. And I watched her. And then her eyes came up and met mine and she said "We got him. He's ok." And she walked away.

See the thing is, when she braked her expensive car and flung her body out into the traffic of that gas station, she didn't know. She couldn't. When she caught him and looked at him she couldn't tell. There isn't a chromosomal-related physical characteristic to tell her why she was there, stopping a child from being shredded by oncoming vehicles.

All she had to help her process, all she saw that made any sense in the world, was my ''I could care less what you think about bumper stickers, my son is autistic and he bolts so I am going to plaster my car with warnings in case, G-d forbid, anything ever happens. So someone will know. So whoever sees this car will understand, for just a brief moment in just a tiny way, that the child inside is precious, but the child inside needs extra understanding." And she saw them. And she read them. She read them. And she understood. She understood that v40.31 sucks. And whatever else is going on inside that car, v40.31 is the worst.

"He's Ok."

And then she got into her car.

And she helped v40.31 suck a little bit less.