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.

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.

<3
#SpectrumMom

#Thankful

Mr. Bubble Beard

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.

PT re-evaluation

PT re-evaluation today.

Every six months doesn't sound too bad, but that 6 months comes and goes so fast! It's hard to believe it's been 6 months since we started getting services through insurance.

He will be 5 at his next PT eval. 5. It's been the slowest, most difficult 5 years of my life. 

And yet it must have gone quickly. 

Because I'm wondering where the time went.