u/Able_Membership_1199

I'm really going through this profound realisation right now that whatever needs you need to have met, to function well enough to manage life (safe space, peace and quiet, sensory issues, other executive function skills) often can't be met when you actually are an involved parent. This is HARD to cope with. It was'nt even a month ago I needed help to overcome simple daytime care of a very active boy 16mo, and just this past week, my wife and him were off to his grandparents to stay for 4 days for the first time since his birth. I was feeling DISGUSTED with how much relief and happiness I felt about the prospect of complete silence, and even more DISGUSTED with how I was feeling and thinking about them comming home again. The anxiety of knowing the 24/7 high pitched screaming and crying and constant demand on my broken brain made me think some really dark thoughts. Anyhow, because of the silence I was able to salvage executive function I have'nt had for a very long time and was able to do a lot of housework I had given up on, and even went to the gym for the first time in a month.

Please someone tell me Im not the only autistic parent secretly dreaming of peace and quiet most days. I really struggle with the pull of my thoughts that speak of regret and mourning, louder than they speak of love, on most days.

Basically just a type of rant/lament type of post, but also I wanna share something I learned from my part. This may or may not resonate with or influence others who wondered about this sort of thing.

My (35m) son (15mo) has his first real summer holidays. Daycare has been closed for the past 2 weeks. I've been doing full time care from morning till late afternoon, and every other day, the entire day more or less. This includes all his caretaking, all his activities, all of it. My wife is working 6 days a week 7-3pm, covering a summer vacate at a local dementia care facility, and it's really only been these past 2 weeks where I've been 90% in, before that, I was generously covering like 40%, since I don't own the means of melatonin producing uh, fruits. I digress.

My point is, I failed my job in less than 2 weeks. Like, I literally failed as a parent and as an adult, in the same way I would've if I had a full time job way past my ability. I was let go of a part time gig in May, but I have not been able to do ANYTHING remotely productive, apart from an occasional laundry load or some dishes. I'm high functioning, but I can't work full time without bouts of burnout and (before lithium) depression and manic swings, and I just learned caring for a toddler as your only job is literally harder on my nervous system than a full time job. I would put it somewhere around the same level of demands as doing eldercare for a bunch of randoms, which I used to do when I was younger, and which I also failed to thrive in due to persistent mental fatigue. My yardstick for failure is the fact I lost my shit on week 2 day 1, I screamed at my toddler full force because he had been particularly loud and difficult the entire morning, had'nt slept well, but still I had to get him in his diaper, I had to feed him etc. etc.. My mistake. I learned that day for the first time you can't fight a toddler, especially not one this young. You just can't. He has 1000% of my energy. He can go all day, and I can't force or coerce him to follow my lead, because he does'nt care about routines, consequences or good vibes, he cares about hunger, closing doors, walking in hands and naps.

My wife beat some sense into me. I called up our inlaws. All of the people I knew who may've been able to take him for a few hours. I begged. This week I had help 3 days, for some hours around noon. I slept 3-4 hour naps in those spaces. Literally I was on the verge of another breakdown, still struggling, getting help day after tomorrow again. I'm still exhausted with the help. If you're autistic and kinda high functioning, having small kids may just humble you all over again, making you feel more deficient than ever. Or maybe not. The baby stage was easy compared to this chaos goblin now. ehh rant over.

tl;dr toddlers are the antithesis of neurodivergence, tis' hard, feeling very autistic and useless.

I've been on Lithium for around 3 years now. I vividly remember how initially I got really suicidal and depressed when I started taking it, sort of like a bad reaction trip, but eventually as the dose increased I came on the other side and felt a balance I've not felt since I was a teenager. Life was great while the treatment was very expensive, I stuck to it 100%.. atleast till lately.

3 years later my cognitive skills have become so dulled and bad I can't even plan out the steps to dig a ditch or make dinner. If it's not the piss poor executive functions I struggle with; it's the lithium induced lethargy (likely due to messing with TSH hormones). 5 years ago I could handle a job multiple times more demanding than my current capacity, and it's agononizing to think about as it's recent enough that I can clearly capture what I've lost and what I used to possess of ability.

Here's my plan though. I'm weaning myself off of Lithium. My starting point was the upper therapeutic range as prescribed and monitored by blood work. That was around 6 pills a day. Currently I'm on 5; about to decend to 4,5 pill a day - stripping half a pill each week. This should be a slow wean as recommended by current practice, but here's my dilemma..

I think I'm spiraling already. I¨m in a horrible place - I have depressive symptoms, even more lethargy than normal, and in general some symptoms of lithium withdrawal already. I'm sure I just barely dipped under the TR; and I have'nt even begun to feel the (hopefully) positive effects of mental clarity?

Dude this sucks. Please somebody in here tell me this will get better, because I'm already wavering and wishing to up the dose. Is that not withdrawal symptoms talking though? I did'nt expect this to be so hard.

Edit: after the spiralling episode things suddenly got a whole lot better the next few days and I am feeling good again. Also starting to be able to focus better and hold a conversation in my head already. Marked improvement in mindfulness and imcreased ability to resist urges. What I was experiencing was in all likelyhood Lithium withdrawal symptoms, which can happen as you start dropping the dose, even if done slowly. Steering the course

EDIT#2:

I'm down to 4 pills, on day 3, and I can confidently say I've cracked the code but not mastered the details yet. I have decided to get 2 blood tests done over 6 months before I consider dropping to 3,5 pills, to understand where I'm at and to count good vs bad days over an extended periode. I've had some bad brain days as per usual; but I've also had the first couple of days of actually hearing my own thoughts for the first time in nearly 3 years. This is huge, because my energy levels are now markedly higher already thanks to greater efficiency in daily life. I think much faster than before, plan easier, remember better and feel pretty awsome. There's still some brain fog, some dissociation going on; but it's less and with the power of conscious thoughts I can snap out of it easier. I won't know for sure how this will go without giving it more time, and placebo is definately affecting my mood and energy right now, but things are looking way up. EDIT 3# Another week or so has passed and I've only good news. The recuperation of my mental faculties has been one thing that keeps getting better and better; my ability to focus and shift attention between two or more processes is improved to a degree where I spend far less energy managing my daily life. It's resulted in a reduced need for sleep and lower stress levels, about 1-1,5hrs less a day so far. Keeping in mind constantly the risk of hypomania, I have only noticed a one negative effects - slightly shorter temper, but manageable, not anything near pre-lithium levels. EDIT 4# It's been nearly a half year since I started this, and while not cured, I have a far improved life. Brainfog and all cognitive processing is tolerably good. I held to my meds scheme, but decided to microdose down from 30/week. My Bloodwork came in at 4.9mmol/l on Lithium last time, which is drifting just under what studies have proven yields a good positive effect. I'm currently on 4 a day/ 28 week, and I notice mental sharpness increasing over time. Weaning out of Lithium was the right thing all along. EDIT 5# I Had no idea this random post would turn into a full on notebook, but so it has. 9 Months in the making, and I can only say it's been the right thing to do. I'm solidly stable at 5.0 ng/dl and have a reduced desire to go much further down, due to feeling generally pretty good. Life has become more demanding, and in general I've been able to leverage improved ability in waves, but I do not consider my journey done, in fact far from it. Last November I had Noro virus, a virus that wipes out most of your gut microbiome in a week, and all my mental symptoms came back with a vengeance. This is where I rediscovered just how important your gut health is for your mental accumen. It took a 2 week treatment to see some strong mental benefits, and another 10 weeks following that where my gut started getting more and more sensitive/upset, and with it, so did my mental abilities. I had also read some shaky studies on how Quetiapine and many anti-psychotics can wreak havoc on gut bacteria, but I paid it no mind then, but it was worth a mention, and I started taking another much longer cure out of curiosity. I'm on week 8 of this treatment and I've significantly improved my mental focus and ability to think, and I'm especially more competent in social situations. Not cured or anything, but I feel like I actually get rested when I rest now, which is something very recent and new for me, and I'm so far into this cure it cannot be by chance anymore. I got tested for gluten and milk allergies and intolerances, but it was found I had at worst a little milk intolerance, and my diet in general is very clean with not much sugar, good variety, vitamins and minerals in good order, the whole thing, and in general I've never had trouble with my gut, atleast not until I was hit with this virus. But now I'm almost certain that something I've been eating (or not eating) may have caused imbalances in my gut biome that caused mental problems, fatigue, inflammation and flares of joint tissue pain. For what it is worth, I intend to finish the last 2 weeks of this cure then, resume another cure with twice as many strands of probiotics to see if I'll feel 90% like my old self again. EDIT6# I'm on week 3 of the 24 strand probiotics, double the amount since last trial. My ability to manage emotions, as well as my overall energy levels, are balanced out and functioning on a level that just keeps rising and rising. I feel healthy, capable and optimistic 98% of the time now. My cognitive abilities, word retrieval, exec. Functions are all in working condition and proportional to my old self standard. I'm baffled that this is what it all seems to have come down to - gut health - I am celebrating and staying cautiously optimistic.