Sunday, September 15, 2019

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.

Thursday, June 13, 2019

When they don't hit a milestone

This week we found ourselves at the DMV to get a state ID for my son. It hadn't occurred to me that he needed one, but not being in a public school , he doesn't have a school ID, and he has had a few things come up recently where he needed an ID.
I filled out the paperwork and watched as he signed his name is LARGE caps on the line , and needed to be reminded how to spell his last name. I watched as he stood for his photo just like the other 17 year olds getting their drivers license. The ID looks just like a driver's license , but it's not one. I pretend that I'm not bothered that he isn't getting his license, that he will likely never get it. It's another milestone that we are not doing.
The truth is, I'm not upset for me, but I am worried for him.
We all worry as parents, right? But not like this.

Friday, November 16, 2018

Sad

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

Friday, May 11, 2018

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.

Wednesday, May 2, 2018

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"