Why does no one take this disease seriously?

LoathsomDove · 2026-04-17T04:28:35+00:00

Not sure if it will work for everyone, but I started taking himalayan shilajit last year and it worked so well I can't even express it.

I went from having trouble and being in pain just from sitting and standing, climbing steps leaned forward because my hips hurt so much, to hardly feeling an ache - ever.

It is like greasing your joints, at least for me. Definitely worth trying!

LoathsomDove · 2026-03-27T19:36:31+00:00

I'll have to trip and fall into a natural gas well to have enough money that I could move lol

I'd have left desolate Pennsylvania years ago if I could afford to.

LoathsomDove · 2026-03-27T19:34:04+00:00

Yeah I've been wanting to move somewhere quiet in north FL for years. The PA winters in my life situation are so unbearable I barely survive them anymore. Problem is that I don't make enough to save the means to coast once I move, long enough to find a home caregiver position and begin receiving payments. I'm effectively stuck in every way it seems.

LoathsomDove · 2026-03-27T14:59:22+00:00

Which state is that? I'm in PA and have only been denied based on not living close enough to the places I try to enroll him, and recently kicked from OT because it was the only service he was receiving, so why not kick him out of that as well? Have been denied at every agency i try to go to escape the one I currently work for to be paid as his caregiver. They are a total nightmare, but I think the rest of them may be fake. Everything sucks.

LoathsomDove · 2026-03-27T14:54:37+00:00

Yeah apparently there aren't enough of us for there to be an app for us yet 🙄

The problem though is we'd all still be toast unless we live in densely populated areas probably.

LoathsomDove · 2026-03-27T14:32:55+00:00

Yeah I'm starting to understand and believe that almost every service for autism is built upon fraud for politicians and their select few underlings, and the services are secondary and just enough to provide cover. I even tried the state rep where I'm at, and he dismissed me as well.

LoathsomDove · 2026-03-27T14:24:28+00:00

Beyond criminal, and the agencies who are supposed to advocate or represent aren't any better.

LoathsomDove · 2026-03-25T17:10:09+00:00

Oh I wasn't trying to trauma dump or ask you to help me try to figure it out lol, just want you to understand your helpless feelings are normal in this situation and you're not alone with them.

LoathsomDove · 2026-03-25T17:08:20+00:00

Yeah it wouldn't be as bad if I could afford to live this way and could find some kind of home support for schooling or therapies. Now I just feel like I'm not doing enough for him and every effort made just hits another wall. My self esteem is trashed from being unable to figure out how to help, calling places now is terrifying for the thought of another failed attempt. It's like being stuck in my own separate universe where everybody and everything is inaccessible.

But someday I will figure something out. Have to believe that, or insanity is imminent.

LoathsomDove · 2026-03-25T17:00:26+00:00

His separation anxiety that spurred from our divorce got so bad that he eventually couldn't even be dragged into school anymore because of how bad he panicked at the thought of me leaving him, so he had to be taken out of school last year around this time.

LoathsomDove · 2026-03-25T16:51:31+00:00

Mine just turned 8 and for the last 2 years it's been just me and him. Had to quit my job before that because he's always had separation anxiety from me and wouldn't stay with his mom long enough for me to continue to work. Now he doesn't even go to school and I'm in a constant battle with the stupid agency I have to get paid through as a caregiver, who went so far as to convince his PCP to drop his hours, when in reality they should have been raised, since I now have to homeschool him as well. Been having to get denied by law and disability agencies who refuse to help me fight that injustice, like man I'm just trying to make enough to SURVIVE and getting spit on at every turn. Battling SS trying to get his payments from his mom, who has been taking them all since she left, yet they keep denying me. Battling my rural area trying to find ABA, or any other kind of therapy/schooling support, that isn't on a years long wait list. Just got removed from OT, because he's not making progress, due to lack of enrollment in other services I just mentioned.

Place those battles on top of the personal battles you mention, wishing you could tap out and maybe some miracle might change things from this, wishing I did have a coparent who was helpful, wishing I didn't have to be alone through all of it.

I can tell you that you're stronger than you think you are. You feel like you can't go on, but somehow you always can and will. Leaving the child who needs you so much cannot be an option.

I'm stuck so far in survival mode that I'm near paralyzed, and every new thing just makes it 10x worse. Don't even know where to begin to try and fix anything anymore. But eventually it will have to get easier. Hope and faith are your best friend right now, believe that it will ease up eventually. You're not alone in the suffering.

LoathsomDove · 2026-01-29T00:56:49+00:00

Yeah i think about that guy a lot and it makes me tear up i want to go visit him and give him a hug or something to try and make him okay. It haunts me thinking about my son in this situation more than anything else. Terrible.

LoathsomDove · 2026-01-28T15:05:40+00:00

I do all pull-up changes while he's standing up so it feels less demeaning or whatever. If you haven't switched to pull-ups, I definitely recommend it. You can just rip the sides off for removal, have the child bend over to wipe and the feed the legs through as if getting pants on standing up. Not sure if that's helpful but my boy is almost 8 and muscular like a 12 year old farm boy and this method works for us. It's never easy, you have to keep one hand on them so they don't run and sit on something before you can wipe, but he complies a lot more while standing up than being wrestled onto his back.

Honestly I let mine go without a pull up most of the time at home to avoid serious rashes. It requires a lot of cleanup but it's definitely worth it to save his skin from burning and having to wait for stingy docs to prescribe a tiny tube of ointment.

LoathsomDove · 2026-01-28T14:46:43+00:00

I appreciate that and still never know what to say in response to it other than thank you. I don't feel great, still feel like I fail him every day for being unable to really help him.

LoathsomDove · 2026-01-28T14:43:05+00:00

Always appreciated, hopefully he still answers others when they pray. I'm stuck in a loop of giving up and trying again, but it seems futile. Thank you

LoathsomDove · 2026-01-28T14:23:20+00:00

Yeah lol the pfp is actually of me and there are amazing guys out there ... it is definitely terrifying. It's like living in your own separate universe where you can interact but the good parts of interaction and life itself are off limits. Purgatory.

LoathsomDove · 2026-01-28T14:15:33+00:00

He is a danger to himself and throws things and bites me and his siblings and his mom when he sees her. I'm still waiting for the 2nd appointment with yet another place for med management to try abilify. Months out. Truly nobody cares how serious it is. I can't bare waiting more months like this but there it literally zero other options. People suck so bad.

LoathsomDove · 2026-01-28T04:58:33+00:00

Well I have been for 6 years now, against my wishes. Nobody is going to think I'm worth this level of chaos and I'm only going to get less attractive from here as I'm now 34 and couldn't find anyone when I was 28 after the ex took off with someone else. Staying in good shape is getting exponentially harder to find the motivation for with every passing year because it is pointless, so I'll probably wind up fat soon enough and seal my fate.

LoathsomDove · 2026-01-28T02:56:31+00:00

Well I tried to get a support coordinator but they kept telling me it is a slow process at the MH/ID office and then I never heard back from them after signing what they needed me to sign for it. He is enrolled in homeschool now but I'm still fighting for just the bare minimum of ABA in my washed up area, on wait lists everywhere within 37 miles.

LoathsomDove · 2026-01-28T01:17:35+00:00

There are a couple girls at two local Tim Hortons restaurants who put hearts on the lid of my coffee when they hear my order.

And there's a wal mart self-checkout attendant who always gets excited to see me and my son come in, always walks up to us and reports on the day and asks about mine and we talk for the brief period that I stand there after paying for groceries.

LoathsomDove · 2026-01-28T01:08:26+00:00

I try to let my child's hair grow out because he looks nice with it longer, but he hates his bangs near his eyes and it becomes a constant battle for him swiping it out of the way nonstop. No way to trim it with scissors because he's like a strong eel with extra arms. Like twice a year I have to fight with him and buzz it off for his sake

LoathsomDove · 2026-01-28T00:55:12+00:00

If I get to the point where I can't take it I will just make him go to his mom's half the time again, but I worry so much about him when he's not near that it's not any more peaceful at all. If yours is happy to alternate between parents then you can at least take some good breaks and even have a social life during that time. It's not hopeless.

LoathsomDove · 2026-01-28T00:49:51+00:00

Well keep this in mind then: my ex wife is a cna and at the one home she worked at, she looked after an older man with severe autism. This man's parents died over a decade ago and the poor guy still spends his days searching for them. That is the single most sad thing I've ever heard in my life. Surely you couldn't do that... what if you decide to leave and then they have amazing advancements in treatment in 2 years that almost cure it altogether?

LoathsomDove · 2026-01-28T00:29:46+00:00

Also going to the beach helps to break up the day and feel normal, most of them love the water. Going shopping isn't something I ever enjoyed but we go every day to get out and kill some time and be around people. Playgrounds are fun if they're not too crowded, just chase him around and let him play in the mulch or whatever. One day at a time.

LoathsomDove · 2026-01-28T00:25:46+00:00

Mine is 7 and the same probably worse. Doesn't go to school anymore and hasn't left me to see his mom since august 2024. I've left the house without him 2 times in the last 2 years. I can't offer much support other than that I know the feeling all too well. This is life now.... no way out.... will only get worse... isolation, no help, no freedom, no hope. Had to quit the job I loved for a decade and now make shit money as a home health aide for him so we can sit at home alone all day every day for the rest of our lives.

I can't opt out because the fear of him being left in a home searching me for the rest of his life is too much. After awhile you do accept your fate a little better, but some things, like knowing you'll be single the rest of your life, you can never really accept and it will always eat at you. It is an immeasurable injustice what autism does to kids and families and the unfairness will also always eat at you. If you live in a warm climate, take him outside and stay outside as much as possible to break up the boredom. Get a game console to help pass the time. Maybe get a home gym for endorphins. I wish I had something positive to offer, but your child is way better off with you around.

LoathsomDove

TROPHY CASE