My mother ended up in the ICU last week with the physician declaring a poor prognosis. A call to the Sissy's hospital to alert them of the family crisis two days before Thanksgiving and the unit director made it clear that we still needed to follow through with our weekend leave plans for Sissy. "We discussed it as a team and we think this is the perfect opportunity for Sissy to prove she can put into practice what she's learned here, especially in a family crisis."
I replied, "You do understand the gravity of our family situation, right? Did I make it clear how ill my mother is? And you want me to drive a total of 10 hours over the next three days to get a child from a psychiatric hospital and HOPE that she behaves all while I process my mother's situation?"
Meanwhile, with no planned schedule for the week, AB was off his routine, had already had one near miss with a rage and was stimming hard and fast. He had been awake the night before past midnight because he couldn't sleep and I was afraid he was headed into another manic phase. "Fine. But I'm leaving my son at home with his dad. He can't make that trip, do a family session and NOT have a rage while we're there."
WG and I drove the distance the day before Thanksgiving, did a family session and drove back with Sissy. I had a narrow window to get to the hospital to see my mother because I left town believing she was still in the ICU. I dropped the girls off at the house and went straight to the hospital, glad to learn she'd been moved to a regular room. Then I returned home to Sissy needing a shower, cookies needing to be decorated, sweet potatoes and a ham requiring cooking and a four hour round trip the next day staring me in the face to celebrate Thanksgiving with The Dad's family.
And Sissy, not home for four hours was already at her games, refusing to shower correctly. Kid you not, my daughter emerged from the shower with her pajamas on, hair bone dry. But wait, there's more. She hadn't even brushed her hair or removed the pony tail bands. And when I said, "huh? what? um..." She screamed and dropped to the floor and demanded that I accept that she had indeed showered correctly and I was on the phone with the RTC begging for assistance. So the staff told me she wanted her hair to look pretty for Thanksgiving, that it was all she could talk about and maybe I should settle her down by offering to re-do her hair the next morning after she showers again, properly.
I got up at 5:30 to put the food on and went back to bed. Got up at 8 ish to get Sissy in the shower and on the way past my bedroom door says, "well, actually, I want my hair to be a different way - i've changed my mind."
O.o you've got to be friggin' kidding me. my mother is in the hospital, i'm cooking food for thanksgiving, AB is stimming his arms off, we have to do a two hour drive and be there by 12:30 and after screaming at me last night and the hospital convincing me it was all about her hair, after driving five hours yesterday, after, after, after and now, NOW she tells me she wants her hair different?!?!?!?! But what I said was, "Uh. No. The Staff said you liked that hair style, that it was the reason you were upset. You're getting the same hairstyle."
"but but but..."
"You don't get to scream at me last night about your hair and then ask for a different style this morning. No."
Seriously? I need this?!?
Then halfway down there she was stick poking like crazy, rocking side to side in the back seat complaining about everything under the sun and then when i didn't respond began chanting very quickly and loudly, "I'm bored I'm bored I'm bored I'm bored I'm bored I'm bored I'm bored"
So i talkie-d The Dad who was in the truck ahead of me, "I'm about to blow a stack. We need to switch. now."
We pulled over and all I said to her was, "You're switching with your brother and riding the rest of the way in Dad's truck."
"What? HUH?!? I didn't do nothing wrong?!!! That's not fair!!! I didn't do nothing!"
"Just get in the truck." I gently nudged her rigid body into the cab and handed her the stack of markers and coloring books, closed the door and mouthed to The Dad, "Good luck."
And that's how it went until Saturday when I took her back and picked up my sister at the bus station. My mother came home from the hospital on Sunday while AB was at riding therapy, my sister is staying at her house, the kids went back to school on Monday, it rained, I slept. The RTC called based on the evaluations of the TL's from the last two weeks, I'm very disappointed with Sissy's performance so I'm requesting medicaid give her another month.
So I went to my mother's house with a bottle of wine, drank it up with my sister and laughed through Laverne & Shirley.
When will medicaid give us their answer?
When is Sissy approved through?
So when do you get Sissy?
Won't know until next week.
Oh, and her IEP meeting was canceled and rescheduled for the 15th and I said, "you do realize she might be home NEXT WEEK"
"Well then we'll just schedule and emergency meeting."
And how is it NOT an emergency right now? "Ok, whatever."
So I've quilted until my eyes are blurry and stayed away from the blog so I don't say inappropriate things in my blind fury and frustration and worry and contempt and Oh.My.Stars can't it get any crazier?
Well yes it can. Because today was the last day I saw the kids' p-doc. He's no longer taking medicaid patients so both AB and Sissy are without a p-doc until I figure it out and right now, the best option is to make the two hour trip into the metro area. In other words, even after Sissy discharges, I won't be dodging the bullet of that mind-numbing nauseating drive. Oh, and the p-doc is recommending we switch AB's anti-psychotic because his teachers are complaining so much about his performance at school but he didn't want to begin a titration that he couldn't follow up with so I've been deferred back to AB's developmental delay specialist - the same one that wanted to put him on Amb!en last summer.
Why yes, yes I am.
And now I will return to my quilting and wait, again, for strangers sitting behind desks to decide the fate of my family's life for the next month. You know, the HOLIDAY season.