Is this...my first post of 2018? Huh!
I was just looking back at 2017. 20 posts last year. That's actually the lowest I've ever posted since blogging. And it's not that there's nothing to say. I've been busy.
So...lots to say, lots to talk about...
This morning I was putting peanut butter on my english muffin and I thought I might have dropped a bit of peanut butter in my coffee, which was sort of in the line of fire, peanut butter ballistically speaking. This is not to say that I fire peanut butter at my english muffin with some sort of peanut butter gun (*note to self: see if peanut butter gun has been invented yet), it was just that a little bit dropped off the knife and landed (maybe?) in my coffee. The surface of the coffee was moving, but I couldn't remember if I'd bumped the mug, or if what I THOUGHT happened actually happened.
I decided at length that if the worst thing that happened was my coffee had a hint of peanut butter flavoring it would be a nice opportunity to see what kind of pairing it made. I took an experimental sip of the coffee. Not a hint of peanut butter.
This morning was the nice happy Lily sort of morning I really needed after last night.
(4 weeks ago)
I got a call just prior to Christmas from an agency with a possible nurse for Lily. One lesson I learned from past meet and greets were that if you schedule conveniently you lose. Looking a week or week and a half out means that person has time to get OTHER interested offers of meet and greets and I've had several who just didn't show up because they'd already accepted other offers before they even got to meet us. I couldn't schedule the same day, but took a half day off to do the meet and greet the next day. She showed up around noon. She nurse seemed nice. She had a lot of experience. She confessed that she had to be gone before 2:00 in the afternoon to go to another meet and greet (so glad I didn't wait), and although previous meet and greets had only lasted 15-20 minutes, she was probably at the house for an hour and a half. In the end she had to rush out the door to make it to her next appointment.
She accepted the position a couple days later, then we scheduled her clinical supervisor to visit and go over paperwork after the new year and the holidays were over. All that went off more or less without a hitch, and the nurse started on January 3rd.
As you might imagine, I was extremely relieved. Knowing that a nurse had been found prior to Christmas was such a gift.
(Three weeks ago)
My BSC (Behavioral Specialist Consultant) quit. She quit because she is moving, and so her last week was a week ago. The agency for the BSC called to tell me they don't have someone to replace her and asked whether I wanted to wait, quit, or be transferred to another agency. This pissed me off. Lily's behaviors recently have been worse not better, so to have an "expert" able to put eyes on her and work through those issues is a great way to keep me from...well...from losing my fucking mind.
In all honesty, I was not impressed with this BSC. I didn't ever really feel like she had her finger on Lily's pulsebeat. She wasn't a great fit. So I'm not exactly weeping that she's leaving so much as I am weeping that they have nobody else to replace her.
So I thought, okay..."I'll go with option 1...wait". I figure, fine, let them hire a new BSC for the case. I like the TSS (therapeutic support staff) that worked under the BSC, so as long as she continues to work, I'm good. The agency called to express some concern that the TSS wouldn't be able to work unguided by a BSC, but I more or less said...then find someone to oversee her in the interim, and they more or less agreed.
So last week the TSS quit. She said she felt uncomfortable working without guidance from a BSC so this is her last week with Lily.
This pissed me off all over again. Lily has been tough. That's why I have them. If Lily was easy...if raising Lily was like raising Emma...I wouldn't qualify for the support they provide. If raising Lily was like raising Emma I wouldn't need or WANT the support they provide. So at this point I'm feeling a bit abandoned.
But hey...I've still got that nurse. Which is nice.
(Two weeks ago)
I'm raising TWO young women now. The ticking red time bomb went off and was fine. I have a nurse after all! She spotted it (no pun intended) and we talked it out. We discussed the plan. We executed the plan.
I don't know how cyclical she'll be initially, but I'll monitor what I need to monitor and try to see if I observe bigger behavioral issues at certain times relative to others.
Her outbursts now are more...violent. I really hesitate to say that word. I don't like how it sounds. I've been reading autism blogs for years. I don't want Lily to be considered "violent" or "dangerous". I've read the blog posts about violent boys (or girls). They scare me. She's just a little girl. But...the ineffective slaps of years gone by have become more...deliberate. Now instead of ineffectually swatting the air near me when she's really upset about something I'm making her do...she'll target me...aiming and slapping. Ultimately it's still delivered with the low muscle tone of a slightly behind-development 12 year old girl, but she's pursuing it. When the TSS really upsets her she will follow her and try to slap
her if she misses. This is all new. And not wonderful as you can
imagine. Which, probably, is why theTSS quit, if we're being honest.
I unwillingly project her six years into the future, a "violent" 18 year old...responding to a policeman or a stranger with slaps and bites..."dangerous and violent"...an adult now...charges pressed.
I slam a mental door shut on that sort of speculation, compartmentalizing it. When will she be out of my care, after all? When would this situation come up, where I wasn't there to keep her from hitting someone who didn't understand that she really doesn't know any better. Because I'll always be there for her. Right? Always...
Fine...even if I get too old, there's always her sister. Even though I promised myself I would never make Emma her caregiver. Would always make sure Emma could lead an independent life free from the responsibility her parents chose if she wished.
But she could help, right...?
I went on a date. Oh...I'm dating by the way. That's just a whooooooooooooooooooooooooole nuther blog post (or...probably not actually). Sorry. If you thought this was about dating...it's not about dating. But...I went on a date. I left Emma in charge. At 15, nearly 16, she knows Lily probably about as well as all but maybe five living people. She's the right age. I trust her. She loves her sister. She's done it before.
But the second course of my meal was delivered to my table, I got a text from Emma. "Lily is acting out a lot and now she is full out sobbing and idk what to do".
I tried from the table to text suggestions, apologetically focused on my phone as I communicated with Emma. This served to piss EMMA off, who apparently interpreted my suggestions as a criticism of how she was handling the situation.
I texted my parents. They were already going to my house anyway. Emma has never felt really comfortable feeding Lily, and she needed a ride to dance, so my parents had agreed to watch the Steeler game from my house, feeding Lily and giving Emma a ride. They weren't there yet. I asked them to hurry. Emma had already texted them.
By the time they arrived Lily had settled back down. The upset happened in the bathroom. She didn't want her pullup changed. If she can't hit you, she starts grabbing things...toilet paper, towels, shower curtains, garbage...anything she can reach.
Emma handled it as best she could. But I was forced to consider...is it fair? Is it fair to ask Emma to babysit Lily anymore? If she's truly becoming "violent" is that something I can, in good conscience, ask of Emma, a 15 year old? I...don't think so. Unless and until I can get Lily's latest behavior more or less under control, I have to save Emma for an absolute emergency.
(two weeks ago (again))
I met with Lily's developmental pediatrician. Her behavior had seemed better at that point. At least I thought so. We talked about all the blood work he tracks. Zinc and Calcium, gluten, ratios, indices. He asked me to check with a specialist about something he called a "movement disorder". He asked me to check with another specialist about some vision disorder. I don't have my notes handy. I can't refer to them.
To add to the running tally that's...a neurologist, a neurosurgeon, a geneticist, adolescent medicine, a developmental pediatrican, a vision specialist, and a movement specialist. That's in addition to the primary care physician, eye doc, and dentist. I just sort of chuckle mumbled...."mmmmooookay dokey!" Load me up, motherfucker! Let's make some appointments! WOO!
BUT...he gave me sort of his take on a plan of care. In a nutshell...before doing anything else, get the seizures managed. This was placed as sort of an order of magnitude higher in the grand scheme of things. THAT...is helpful. Okay, so regardless of whatever else I need to do, step 1 is getting the seizure disorder under control.
And although Lily hasn't had what anyone (caregiver du jour) might consider a seizure in months, it's not currently being "managed". Still waiting for a prescription from the neurologist for that. Once that's done, we can move on to the next thing.
What might this new seizure med do to/for Lily's behavior/sleep? No idea. Each new doctor's visit is a new lead to pursue. Each new discovery is only the stepping off point for a new investigation. Oh...she has THIS? Check with this doc, and run this scan, and we'll meet again in a few months. Months pass and a bit more of the puzzle of Lily gets revealed but ultimately we just see...more puzzle. This process has been going on for 11 years. 11/12ths of Lily's life, and the percentage will just increase over time.
Wish: One doctor who could look at it all and tell me what to do for her. One doctor that could tell me that this behavioral component is probably the result of this aspect of her condition and the best thing to do is X.
But there isn't anyone who can do that. That person doesn't exist.
When I was five I remember I was outside our home in Culbertson, Montana with a broom. I was sweeping back and forth across the dirt beside our sidewalk. I found it unsatisfying because I kept sweeping the dirt and although it was fun to watch the plumes of dust boil around me (god my laundry must have been a fucking nightmare) no matter how much dirt I swept...there was just more dirt underneath. I mean obviously. Because I was literally sweeping the bare ground.
My point is...that's where I feel like I'm at right now. I'm trying to clean up...see results...advance...progress...show improvement...ANYTHING. Just more dirt.
(Three years ago)
Sorry mom. I'm going to bring this up again. Please understand this is not just something my mother said. She did say it though. And I instantly blew up. Or maybe I didn't (I can't actually remember). Maybe I just boiled about it and we talked later. I think I did though. I remember we talked about how frustrated I was after the fact and she apologized and we made peace and she understood. But it wasn't just her...it was EVERYONE. EVERYONE does this. But this story is about the time SHE did, because it's just...well it fits the above better than any of the other stories.
Lily was playing on the special needs baseball team. She didn't really love it. She was an unwilling participant in a sport where participating is basically the whole point. And so ultimately I stopped forcing her to go.
Lily was funny to watch at times, although honestly I was mostly stressed the whole time because the skill level/competence of the volunteers that they paired with the kids like Lily was highly variable. And not everyone had great success with her.
Anyway, I remember it really took a lot to get Lily to go to first base after a "hit". She'd hit the ball hand over hand and then everyone would yell "RUUUUUUNNNN!" and she'd walk, slowly, with some stops along the way, before she would finally stand on first. This was mostly amusing, because Lily doesn't do what Lily doesn't want to do, and so it's easy to reframe the situation as Lily just being adorably strong willed and not interested in hurrying if she doesn't WANT to hurry.
My mom earnestly said to me that we needed to work on Lily running to first. And I think I blew up. I think...(honestly, i probably already blogged this, but I couldn't find it)...I basically said..I have a hundred other goals that are more important than 'running to first' that I'm making no progress on. She's not potty trained, she can't tie her shoes, she can't write, she can't read, and you want me to work with her on running to fucking FIRST?? Let me add that to the list immediately! (sarcasm).
It was the combination of every thing we "need to work on", and everything we weren't seeing any progress on. It was the "one more thing" that was ultimately meaningless and probably half meant in jest, that if it had been almost any other kid...or any other NT (neurotypical) kid, would have been no big deal. Sure...add it to the pile. But instead, because it was Lily, it was...ARE YOU KIDDING ME???
And so we talked about it and I think my sense of powerlessness and frustration was adequately conveyed and mom and I were back on steady ground again.
But I bring the story up because each of these doctors or behavioral specialists always adds just one more thing in the vacuum of medicine that says "I only care about those things specifically under my specialty and nothing else". It's the...why don't you go get her checked out for movement disorder. It's the...we need to see about this visual disorder. It's the...let's get her seizures under control first.
And, she's still more or less the same little kid she's been since she was three. Many of the same behaviors. More or less the same skill set. In hindsight it's really hard to see any progress. I'm sweeping bare ground and trying to clean it up. It's not fucking working. Nothing is fucking working.
Or at least that's how it seems when things get dark.
I long ago stopped trying to mold Lily into something she wasn't. Although I may not know what she someday might be, I can see relatively clearly some that she will not. She will never be independent and on her own. She will be in someone's care. So we work on goals, but I don't care about goals anymore. I'll never say "she can't" without seeing if she can, but I no longer care if the answer is "she can't". She's Lily. I love her unconditionally. Whether she ever EVER learns to read or write or tie her shoes. Whether she's every fully potty trained. Whether she becomes violent toward me...I love her. No matter what.
At 2:23 I got a text at work from the nurse.
"Jim I don't know what you want to do. Lily has been in the bathroom now for almost an hour throwing a fit every time I try and go near her. It's hitting, scratching, trying to bite me. Do you want to try and call on speaker phone to talk to her or is it okay if I ask Emma to help?"
Remembering the weekend, where Emma had struggled with something similar, I asked Emma instead to facetime with me and talked to Lily via her phone/video. We couldn't get her out. The nurse couldn't get near her. Lily kept grabbing her glasses...hitting...so much spitting.
After trying a few things, I gave up, took the rest of the day off and drove home from work. She was still in the bathroom when I got there. I got her up and changed and in bed and told the nurse to chart and go home. We talked for a while about strategies. Talked for a while about things to do the "next time". She was apologetic. I'm sure she wished she'd been able to handle it. But...she hadn't.
I asked my parents to shadow her for the rest of this week, stepping in to help if Lily got out of control. Letting Lily get used to the nurse's presence. Maybe there hadn't been enough transition to develop the relationship. Maybe she didn't "recognize her authority". I don't know. I do know that Emma had almost THE EXACT ISSUE a day or two prior and that certainly was not a case of developing a relationship.
Maybe it'll help. I'm worried the nurse will quit if it doesn't get better. I'm powerless to make it better.
Lily was spitting so much last night. It infuriates me. Gets under my skin. With slapping, scratching, spitting and biting, I was at the end of my proverbial rope. Strung out. No patience. No temper. YELLING. So much yelling. Then things would be okay for a while...then back to BAAAAAD.
And I thought again about how hard it is to do this shit alone. Not alone alone...I mean, in this post I rattled off 12 possible doctors, a nurse, Emma, the grandparents...but I mean as a single parent. One of the things that Leslie and I did for each other was tag out. Tag out when you've had all you can take. Tag out when you're too tired. Let ME take over for you. YOU take over for me. There's no cavalry here anymore.
And I was depressed. Powerless to stop myself from projecting once more into that dark future. If a nurse can't care for my daughter when I'm not around, who can? How can I always be around if I need to work? What will I do when I'm too old to care for her? And I started thinking about medications...something to calm her, mellow her out. You know...all the medications I SWORE I would never use. And then I think...can't try any medications until you get those seizures under control. JESUS.
RTF (residential treatment)?? Can't thing about that.
I felt like writing last night. I felt like sleeping last night. I felt like reading last night. I felt like crying last night. I felt like exercising last night. I felt dull and sad and...emotionally brittle.
I sat in my chair in front of the TV and turned Rick and Morty on staring at it until I nodded off. Eventually I collected myself and turned off lights and put away dishes and refilled my water and went to bed. I finally got to that place I thought didn't exist. The..."I don't have time to __________" place.
Each thing excludes all the others. I wanted the cathartic unburdening of soul that comes from writing. I wanted the mindless entertainment of reading. I wanted the frustration burning exertion and improvement that comes from exercise. I wanted the self indulgence of just letting loose a sob or ten. But I knew that Lily would be up at 4 a.m. and I hadn't slept well the night(s) before.
So I slept. And Lily woke at 4, and we sat on the potty and then back to bed. At 4:15 I went back in and settled her down and she fell asleep until I woke up around 5:30. Perhaps not quite refreshed, but at least in a much better mindset.
The snow fell steadily last night, covering my driveway with maybe two inches. I knew I had to get out and shovel it, but it's hard in the mornings...half watching Lily, half outside shoveling snow...and I didn't know how Lily would be.
But she was angelic. Happy. Bubbly. Asking for things and then satisfied with those things once given. Compliant. She was upset about having to put on a bra, but what woman isn't? She got over it. Ate well. Was excited for the bus. She was so pretty in her new shirt and pants from Christmas, her hair freshly butchered (fuuuuuuuck...I really need to learn how to cut bangs) playing "What's in the lunch box" on her iPad while I puttered around the kitchen.
I cleaned off the driveway just in time for the bus to pull up to the driveway, the brakess squealing protest as it slowed to a stop. I put the shovel down, walked inside and collected Lily. We walked happily down the driveway and I waved her off to school.
School can handle her. School knows how to manage her and keep her happy. I feel better knowing she's on her way there. Part of yesterday was that it was the first full day of nurse care. No school. Tonight my parents will be there. I feel better knowing my parents will be there.
I'll talk to the school. See if they have suggestions moving forward. See what they suggest for the nurse. The agency is already talking to me about a new BSC and TSS. We'll see. I'll reach out to the neurologist today and push them on prescribing the seizure med. Plan your work and work your plan. We'll be alright. Dig out of the snow. No easy answers. No manual for this.
But...I have to do better. Whether that's just getting more sleep? I don't know. It can't hurt to be less exhausted when dealing with difficult behavior. So I'll start there.
It'll be alright.
The cleaning woman comes later today. I tidied a few things up. It's ironic, having to clean for the cleaning woman...but here we are. I picked up my pajamas (tshirt and shorts) and stuffed them under the pillow of my newly made bed. I put the unfolded laundry baskets on the bed so she could mop. I tidied the bathroom as I brushed my teeth and went downstairs.
I hurriedly threw my lunch in the lunchbox ("What's in the lunchbox" I intoned, like the game Lily had been playing...leftover pizza, if you were wondering). I ran down to the basement and transferred the laundry to the dryer, tossing a new tidepod (don't eat the tide pods, kids) in the wash before adding the last load of dirty clothes, shutting the lid, and turning it on.
On the counter was half of my coffee. I'd gotten so busy I hadn't finished it. I gulped what I could...and immediately spit it all over my counter and floor as something warm and soft slid inside my mouth. My brain immediately recoiled...slug? cockroach?
Peanut butter. I had forgotten about the goddamned peanut butter. It had remained, fully formed, a mystery globule in my half-finished coffee.
Bad pairing. Do not recommend.