Independence. ?

Sometimes independence looks like tailing your kid from a safe distance like a stalker .
Here's a story (there's a moral here, stick with me)
My son is 17, he wants to do what 17 year olds do. I get it. But he was upset, and upset = irrational and unpredictable. He took off on a scooter and headed to the park. I gave him a headstart, and then got in the car. I saw him head into the park , and then drove to where I could see the swing from the road. Sure enough, he headed to the swing, and feeling proud of myself, I quietly stalked from the car like a creeper, at least he was safe.
Until ..
He hopped off the swing and walked further into the park. I watched, but couldn't see where he went . I drove home and told my husband to bike around the perimeter of the park.
I waited , a bit too long. He came back, out of breath and said he couldn't find him .
Hoping he would show up, I contemplated what I could actually do in that moment. My phone rang. When I answered , all I could hear was music.  I hung up. The phone rang again, again, just music. I was confused, but started to see an incoming text - something about my son, at a party, all ok... Wanted to let you know...
I showed my husband and he said "there is a party happening near the park entrance on the other side! I drove over, and looked for loud live music. Sure enough, a house party was taking place, live band in the driveway, kids, a trampoline, lots of people, and my son. In their garage helping himself to soda and brownies, and dancing to the music.
Relieved, confused, and humiliated, I caught the eye of a woman with cellphone in hand , and she quickly flagged me over. Turns out, by some crazy miracle she was the old nurse of our pediatrician once upon a time, and had been the one attempting to text me.
The good news in all this, was, my son was wearing a bracelet I had made for him with his name, and my number, and the added note: "autistic- may not respond" . I had it made in the event he would be questioned by police, and I told him to point to his bracelet and say over and over "read my bracelet" . At 17 my son is as big as a man now , If a 5 year old wandered into a private party and started dancing , people would respond with grace and care, but a strange man? You hope that police are not called, you hope he isn't misunderstood, you hope he doesn't panic, you hope he doesn't .. well, you think of the worst things. But here is what I'm choosing to focus on- he handed his bracelet to this woman, this older nurse, who looked like a safe Gramma, and said "can you call my mom for me and tell her I'm here"
THIS IS A HUGE WIN guys. He did it. He remembered to call me. He didn't have his watch on that can make a phone call, but he had my number on his wrist and he used it!
But, yes, he did bomb some random family's party, He did eat their snacks, and He was very much dancing away in their driveway . It was not good...it wasn't a safe thing to do, but, it could have been SO. MUCH. WORSE.  The person who's party it was recognized my son from the farmers market, from his reputation as an artist, and one of the guests used to be his nurse when he was little, and he asked for assistance to call me. These are the things that saved us , this time. Community. I can't underestimate the importance of being involved in your community in some way. Stick to a small town, and force your introverted self to be out there , with your child, meeting people, gaining a reputation , gaining their trust, so that if you lose him/her at some point, or there is a problem, a crisis , they call YOU, and NOT the police.
Thank God it was ok this time.

Sad

I let my son sleep in so I could cry by myself.
And that is in my "pro" column today.

Mental illness

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.

THIS. 100% this.

https://www.yahoo.com/news/no-one-says-loud-raising-123351942.html

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"

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.

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."