Friday, April 6, 2018

Quit freezing my lettuce motherfucker


One of my kids brought up some article about personalities based on the month you were born.. and she says "it said people born in May are cheerful .."
I hold my breath
but my son pipes up "whatever ! Just because mom is really positive and happy has nothing to do with her birthday - it's a COINCIDENCE"
Exhale.
It's impossible to truly know what you're kids think of you- right? I put in MASSIVE amounts of energy to portray positivity to my kids. I really do. But i never know if that comes through , if they feel it or not. I have no idea how they SEE  me ever. But I try. I try so hard. And I try so hard to never be angry AT them . I take deep breaths, I watch my tone, I try to reassure them if I'm cranky I'm just tired -  it's never ever THEM ..

But it has to go somewhere right?
This might explain why I just told the produce drawer in the fridge to go fuck itself.

Tuesday, April 3, 2018

Hospital

"I don't  want to to be imortal. I'm  stuck in pergatory. I want to end it. "

I know what he means, but she didn't. Her eyebrows raised in concern as she typed .

"Can we tour the facility?" -No. "Can we see photos of the rooms?" -No.  "I would need to prepare him...if he has a meltdown can we leave? " -legally we can keep him for 48 hours against his/your will.
"Will you work with his Dr on a med plan?"
- the Dr will decide what he should be on. We will change his current med immediately and not gradually or slowly"

"If he has a meltdown- " - everyone has meltdowns here. " But a meltdown in an autistic person is different than a neurotypical person"
- meltdowns are meltdowns.

It was becoming increasingly clear this was not the right plan for us. Not at all.
She left to speak to a Dr. She wasn't coming back... We kept waiting... Suddenly realizing we could not get out- all the doors were locked from the outside. No handles. No call button. But a lot of cameras.

He starts to panick. Suddenly a large male nurse arrived out of no where and suspiciously asks what's going on. I calmly explain we would like to leave.

"That's going to be a problem" he says.

Now I feel like I'm in every terrible movie that has ever depicted a psych ward. 
My son is starting to hyperventilate- I consider joining him.

She finally returns and I sign us out.  She tells me I've made the right choice, that this is not the place for him to be. But there is no place for us to be. She looks at me and simply says " I don't know what to tell you. Good luck"

Sunday, April 1, 2018

Sleep(ness)less

When I was a kid I was really freaked out about my parents going to sleep before I did. Something about it was so unnatural And anxiety-inducing. I knew they'd be going to sleep at some point of course, but falling asleep with them still awake made me feel like someone was in charge, keeping things in check, holding down the fort. I didn't want the responsibility of being the last one up and in charge of the household.

I sit here in the dark listening to the squeak of his bedroom swing. I wait for it to quiet before I allow myself to get in bed. He will eventually fall asleep... But I hold down the fort until I know he is safely still .

Hypervigiliance

https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

There's this thing that happens when you become a mom, a switch is flipped that enables you to hear your baby before they even cry, to be able to sleep- but still be a second from waking, the ability to read minds, to anticipate needs, wants, moods.. to be able to be continuously 10 steps ahead of your child. It's literally a super power. It's hard to explain, but if you're a mom, you just KNOW what I'm talking about. It's supernatural.
Most parents have this hightened sense through babyhood , but some of the intense hypervigiliance does dissapate some as your child grows, gains skills and independence , they are slowly taking on some of their self off your shoulders.
This does not happen to parents of special needs kids. The hypervigiliance does not end. There is often no day on the horizon that you are waiting for that symbolizes REST.

Friday, March 30, 2018

counseling

"I've been living with autism for 16 years, and it's hard, but there's always something we can DO , there's always a solution... THIS- depression- this I can't do anything about. I can't fix it."

- "and it's not fair."

" no. it's not fair, his life is already hard enough"

- " it shouldn't happen, but it does. co-existing diagnosis happen  ...Kids with autism get brain tumors, and it's like- What.the.fuck."




and that's when I knew I could talk to her. She gets it. she gets it because she understands autism intimately, and she knows that depression in an autistic person is different than it is for others. If you don't understand this, you can't help me.
Autism is a DOING thing, it's a problem-solving, brain-storming, puzzle-building, detective sort of thing. Depression isn't that. there is nothing I can DO, SOLVE, or FIX. I can't brainstorm out of this. I can't analyze it for him, I can't give him a remedy. Depression asks me to do nothing. it asks us to surrender, and just ride a wave. I somehow need to be both these supports at the same time- though they completely contradict each other.  



- " you've been fighting an enemy for a long long time, and suddenly, without warning, a completely new enemy blindsides you and starts attacking  from another angle, and the way you have been fighting for all these years does not work on this new enemy"


"yes."

Monday, January 19, 2015

lost

everything feels like defeat. achy, tired, weariness. we just hikedamountain. we just got home from war. we just did the biggest thing possible, without a pat on the back, without a parade, without a book deal, without a crowd, without being knighted. without a goddamn break. there is no one waiting for our return with a hot soup and a bed to catch us in.
get back to it.
take kids to school. fix the car. brush your teeth. stand up and sit down.  say words. smile. answer the phone.

my dad is gone. i know where he is. i don't know where he is. god please let heaven be real. please be true. i need it .
i need my dad. please be here.
it wasn't supposed to happen that way.
i spend so much energy manipulating the images i see when i close my eyes, that i can't sleep. when i stumble on an image of him healthy and whole, i just keep thinking it.  holding it there in front of my eyes. replacing it with the other images.
hold it there.

people die. people i know lost their dad or their mom. it happens. i'm in the club now. i'm one of those it happened to. i lost my dad.  i lost him. where is he? he doesn't feel gone, but i can't call him. i can't hear him.

get back to it. the living.

how do we do that? how do we make this have meaning? how do you carry it ?

Wednesday, May 8, 2013

getting bigger

having a kid with special needs (or more than one) teaches you a lot of things
i'd venture to say i wasn't a person of that much substance before my kids taught me these things.
one of which is - perspective.

your expectations out of life get very small in a way. will he speak? will he sleep? will he use the toilet?
oh yes. every parent thinks these things, but they don't really mean it because in their heart of hearts they believe these things will happen. not all of us can know these things for sure.

there are days when i actually want to go back to those times when the hardest part of my day was " what does he want?" . yes. even with the tantrums and the staying awake all night-
because it was simple. my day was so simple. my goals were so simple. "what does he need? what does he want? is he safe? " that's it. nothing else. it wasn't ok but it was ok.

no one ever gave me a reason to hope. no one ever could say what would happen or what he would be able to do.
i just chose to hope. i chose to believe a destiny that didn't exist. I willed it into existence.

he speaks. he can use the toilet. he sleeps.

i am afraid every single day. i wake up in the night with a fear gripping me that takes all my breath out.

"what does he need? what does he want? is he safe?"

how do we keep them safe?

every parent worries as their child grows. every parent worries when they start school. and then again when they leave that school to go off to another.  i know it is silly to say i worry more. i worry the most.
but just give this one to me. i'm more worried than you.

thank you thank you thank you for letting me have him. for giving him to me. i'm always so ...relieved  that i had him and no one else did. because no one else could love him the way i do. no one else can read his mind the way i can. no one else knows.

how do i let him go ..OUT THERE in this world when i know what he can and can't do. i never ever admit the "can't" because i know that the only reason he ever could was because i willed it to be so. so i will never tell him my doubts. i will never utter them into the blackness of the quiet still night.