I still don't even know what this is. Is it the autism that makes him sad? Or would he be struggling with this either way? Suddenly my life has ceased to be my own, and all my minutes are hung on whether or not he is happy in that particular moment. My whole life is now about holding him above my head while I tread water. I'm a terrible swimmer and I'm afraid.
Friday, May 11, 2018
Wednesday, May 2, 2018
Friday, April 6, 2018
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"
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
"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
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 .
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
- "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"