I’m not sure if this is going to come off as a tired rant, a tirade, or an attempt to show others that they’re not alone, but here we go anyway.
Advocating for one’s family is a ball-buster. Bureaucracy makes it so that the people working at the level the public deals with on a daily basis in the schools, and all the way up to the federal government, are in a position to simply throw up their hands and say, “Sorry, this is the way it is.” Which makes it necessary for us advocates to go above their heads. But it’s not as easy as just making a phone call. Oh no. There are “proper channels” we must go through. Forms to fill out and send either by snail mail or fax machines we have to drive around town to find and then spend money on. And then there’s the wait. The wait that is so damned long we forget whether we do indeed have to just wait or follow up. Follow up? Oh yes, start at the bottom again to get the right phone/fax/post office box number.
And while all that’s going on, something else has come up. It’s a lot of work and it’s stressful! Even if we do manage to talk to someone on the phone we have to go into “stand and fight” mode before we even start. Because nothing is easy and no one at the other end is going to give in. If we’re lucky (and I use that term loosely) we get transfered to the next higher up on the food chain so that we can go through our case again. And then what? Normally it’s wait and see. Or, “We’ll mail you the forms to fill out.” Again.
What I have on the go includes (but is not limited to) getting an aid to help my 20 year old Autistic son in class so he can graduate high school this year; getting the funding I’m entitled to for my other son’s eyeglasses; finding out what the hell is going on with the holter (heart) monitor his cardiologist ordered months ago; sorting which hoops I have to jump through for the nurse at his school who doesn’t want him to eat by mouth this year, this after a lengthy process (with a two year waiting list) of having a swallow study done, followed by a report which was discussed at a meeting with the specialists and the above mentioned nurse to explain that he could eat by mouth; finding out what happened to the money my mother was supposed to get back from the condo corporation after we sold her unit… The list goes on and on. And it’s all wrapped up in bureaucratic bullcrap.
Luckily I’m a stay-at-home mom, so I don’t do anything all day anyway… 🙄
I’m sure I’m not alone in this. In fact I’m sure there are others out there who have it even worse than I do. I have to wonder if there’s a better way to do things. Don’t you?