Been a while. I’m doing the ostrich mom thing at the moment, sitting in the hurricane eye.
My autism is showing. I’ve never been officially disagnosed as on the spectrum but sometimes it’s pretty clear I’m on it, to whatever degree. Currrently I’m listening to the same song on repeat as a kind of “auditory blanket.” The song itself, Bittersweet by Big Head Todd and the Monsters, has little significance – it’s just something my mind latched on to when I heard it recently so I kind of wrapped it around myself. It’s hard to describe why, how, or when it happens, but I think I tend to do this when I feel overwhelmed or helpless – which is how I feel with Boo so much of the time lately. The repitition keeps me focused on notes and words to the exclusion of the things I would otherwise be thinking, that I do not want to think. It’s why I’ve seen some episodes of Little House on the Prairie over and over, and why there are movies I’ve watched and books I’ve read quite literally dozens of times.
They make up the sand in which I bury my head.
There is one thing I don’t want to write about here because it would involve throwing a certain someone under the proverbial bus so hard they’d almost certainly be run down and squashed by said bus…and I’m not here to do that. I’m not sure how to tell the story without the bus. Let’s just say that Jonah was nearly banned from an eye doctor’s practice where he’s been a patient for nearly 20 years and it was entirely someone else’s fault. Oh, I was livid. Partly at myself, for not making damn sure I could be there, as I am 98% of the time…but I was getting a kidney stent removed that same morning. I managed to smooth things over with the office and secure my son his next appointment.
So about that stent…on September 9th I woke up to day 3 of what I thought was the worst case of the flu I’d ever experienced – chills, fever, body aches, the whole thing. I mean to tell you there were times I was lying in bed and staring longingly at the glass of water on my nighstand because I couldn’t muster the strength or energy even to reach for it. My boss, God bless her, asked if she could drop food off for me and when she arrived I had rested enough to get up, and I asked her to drop me off at urgent care. From there my vitals were so bad they called an ambulance, and a few hours later I was in emergency surgery to implant a stent around 2 kidney stones blocking my ureter. Turns out the whole time I thought I had the flu, I was actually in sepsis. After the surgery I woke up in the intensive care unit with three IVs, a thick needle going directly into my artery to constantly monitor blood pressue, a catheter, and leg cuffs to prevent blood clots. After just a few days they sent me home, but it was another 6 weeks and 2 more rounds of antibiotics before a second operation to get the stones out –and then another week with yet another stent. The stents are what kicked my ass, actually. I was weak and exhausted and in pain the whole time, some days so much that I had to call in to work and just sleep. As grateful as I am it’s over, it seems the minute that ended, Jonah started having problems. Sweet, then bitter…
Autumn is historically a rough time of year for Boo, and this year is definitely no exception. Jonah’s had several behaviors, as they call them – incidents where he attacked and hurt staff. Last week was the worst one; they were transporting Jonah and some of his housemates back to the house after an outing when he started hitting one of the housemates — something he almost never does. Staff got between them, then they pulled over and spilled out onto the side of the road, where all hell broke loose. He was biting, hitting, kicking, scratching, head butting, the whole works. They called for backup and more staff drove out to help get Jonah under control and back into the van. It took a while. Jonah would say “all done” and then attack again. They held him on the ground and waited, then let him up only to have it happen again. When it was finally over, one staff member had to go to get cheecked out at urgent care (he was ultimately okay, but had been bitten on each hand and kicked in the chest and stomach). Jonah’s a little scratched up but he hasn’t had another behavior since and seems no worse for the wear, really.
Yesterday I sent an email to the powers that be asking that all staff and administration be allowed to talk freely to Briana as if she were me. Not only was Briana Jonah’s house manager at Anderson, but she is next in line after me to be his guardian. She knows him. She loves him. She paid attention to the timing and cyclic nature of his behaviors, and she learned how to mitigate their severity and frequency both. She’s willing to offer input, and I want them to listen to her.
Still there is a hopelessness in hearing about his behaviors, a helplessness I can’t abide. And so I play Bittersweet again and again and allow myself to kind of melt into the song. It may be a little crazy, but I figure it’s innocuous.
And for the first time in as long as I can remember, I have no pets. A month ago I had to euthanize my sweet old Gracie girl kitty, and the house is empty without her. Now it’s just me and Bittersweet, and with Daylight Savings gone too I have to force myself to stay up some nights. I’m not depressed, but when you live alone there’s no one upon whom to gauge normalcy, so I eat and sleep on my own (sometimes weird) schedule. I’m grateful to have another season of Rock Voices upon which to place my focus. Last night was solo auditions and I tried out for 3 songs. We shall see what comes of that. A few weeks ago I tried reading some of my poetry for the first time at Caffe Lena’s open mic night, and since I didn’t get booed off the stage, I call that a win. I reckon the more I can drag myself out of the house, the better.
Jonah was happy on Sunday for our visit. One of the staff came with us for what has become our routine – walk to Pizza Works where Rachael greets us from behind the counter. She knows what Jonah wants – a slice of meat lovers’ pizza with blue cheese on the side (in fact the first thing Jonah says to me on Sundays when I walk in the door is “blue cheese?”) After pizza, we walk back up the street and past his house to Stewart’s for an ice cream sundae (with “shprinkoos” and M&M pieces on it) and then back towards the house and past it again to a side street, where we have extra walk before finally returning home. I always say Boo would walk to California if we let him and I’m not sure that’s an exaggeration. This outing plan only works when they can send someone to walk with us, which did not happen the previous 2 Sundays, both beautiful days – so much to my disappointment, I had to bring the food to him and we walked the hallways of the basement back and forth in a much-diluted version of the routine. I know better than to attempt the outing alone and yet I damn near tried it anyway. Almost.
I wanted to write here more often over the summer, but I got sick and then life got busy. Since June I’ve been exercising and eating better – lost 20+ pounds off my “menopause belly” and am now mostly working on getting toned and healthy. It’s very good for my mental health, too. For a while before the kidney stone saga, I was obsessed with getting steps in. I wore my smart watch on my ankle and woke at 5:30am to walk and walk and walk, to the point where I was averaging 25,000 steps a day, which was unsustainable in the long run – but effective for burning the calories off. Anyway, I’d like to stay strong so I can keep up with Boo.
We wish you autumn-into-winter days that are peaceful, happy, and much more sweet than bitter!
