Paperwork. I absolutely hate it. It signifies that I have more appointments to go to and more services to fight for.
I was waiting for some paperwork from the county. Having a daughter with autism who is now an adult, I feel I must get services for her in order for her to succeed in life and also to take the burden of driving, care, and other things off of her parents. Uh, that would be me. It took me months to just call there. I didn’t want to do it. I don’t know if it was asking for county help or just the thought of having to take her to another appointment. It’s just tiring.
I managed to call there about a week ago and answered some questions. I’m not very good on the phone. I need time to process questions and I felt rushed. The receptionist said if her IQ wasn’t 70 or below, she wouldn’t qualify. That’s so stupid I could scream. Her IQ is 74 and her deficits are enough to have her qualify for it—so says every autistic parent I have ever met! And furthermore, autistic kids can be genius and have IQ’s through the roof, but still not be able to function fully in society. Ask any professional and they will tell you, yes, they need outside help. I swear sometimes the county and social security just likes not having to pay for this stuff. Well if that’s the case, I’ll lawyer up.
Anyway, the papers came in the mail and I don’t know what it is about paperwork, but I got this sudden sense of dread. UGH. More shit to fill out. More explaining. More people not getting it. I just get tired of fighting for basic help from doctors, counselors, social security, and now the damn county. But, fight I must.
I opened up the packet and more dread. Now they wanted me to take her to the doctor to have them fill out stuff that backs up my claim of autism. The diagnosis from last year wasn’t good enough. They also wanted her doctor to say she had these issues. Like I don’t have enough stuff to do?
I’m not gonna play victim but does anyone ever think about the caregivers and parents who take care of these kids and how exhausting it is? But go ahead, throw in your extra papers and doctor visits. Assholes. I thoroughly enjoy visiting clinics and doctors. It’s fun.
I don’t know if I’ll ever get used to this. But, the thing is, once county services and social security and other services are set up, it’s not a big deal. The burden of proof is on them to kick her off the services. And autism isn’t curable. So there you go. The only way she’d ever get kicked off is if she made too much money and if that was the case, would we need county services then? No.
I told my husband today that I get tired of always having things hanging over my head–and I don’t mean the sunshine. I mean, all the things I need to do. If I mess up, it feels like a whole lot of guilt associated with that. I’m not ever allowed to do nothing. I have to always be in fight mode, it seems. And that’s pretty damn exhausting. And not just with one kid, but with the other one too and her mental illness. I’m always go, go, go. And it feels wrong, in some ways, to just be like “You know, screw it today”. I feel like I have to always be doing something so we are heading in the right direction. And if I don’t, it seems someone reminds me often that I should be doing more.
Everyone has a breaking point, you know? And at times, I feel like I break my own sanity to save theirs. That’s not fair, but it’s life.
So the damn paperwork sits on the kitchen table for now because I don’t give a crap. I’ll get to it. It’s just today, I feel tired from the fight and from the endless questions and appointments that seem to have overtaken my life.
I realize I need to adjust my attitude, but days like this are hard. And it’s rare when someone comes alongside me and says, “Hey, you are doing the best you can. Take the day off. It’s ok.” I get angry at the fact that there is often no reprieve. So I have to adjust and adapt and take breaks if I need to. It will get done when it gets done.
We can’t always be heroes. My cape is in the wash machine.