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?
October 12, 2015 at 9:11 pm
I feel for you Linda. I find that as time goes by, trying to rectify any concerns with any companies, let alone the government, is a lesson in patience. I don’t know when everything became so darned difficult. Oh wait a minute, I remember, it was in a time before pushing buttons to bypass automated voices, and human compassion had a better existence. A time when human interjection counted for a lot; like going on a job interview and having the opportunity to present yourself, instead of submitting in cyber space and pegged as just another entry number. Don’t even get me started. I feel for you girl! 🙂
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October 9, 2015 at 4:52 am
It is very tough to fight against the bureaucracy for our beloved ones. I agree Linda.
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October 9, 2015 at 11:35 pm
It is, and I’m sure you know first hand as well as I do. Thanks for your comment, Irene. 🙂
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October 8, 2015 at 8:43 pm
I have yet to find a “better” way. Sometimes I feel it is a marathon, that my persistence will outlast the bureaucratic bulls**t.
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October 9, 2015 at 11:34 pm
To take your metaphor and run with it, so to speak, it really sucks going to bed out of breath every night though, doesn’t it? 😛 If I do find a better way you’ll be the first to know, Vic. I appreciate your commiseration. 🙂
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October 8, 2015 at 7:45 pm
There should be a better way to do all of this. It truly shouldn’t have to be so hard to get what our kids need. Sending you hugs. No matter how much harder it may be for someone else in this world, this is your reality, and you deserve to own how much it sucks.
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October 9, 2015 at 11:31 pm
It really shouldn’t be this hard. I think we feel it that much more when it’s our kids too, and not just us. Thank you for your support. It’s greatly appreciated. 🙂
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October 8, 2015 at 5:50 pm
It is a nightmare!
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October 9, 2015 at 11:28 pm
It really can be, Willow. Thanks for your comment. 🙂
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October 11, 2015 at 3:44 am
🙂
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October 8, 2015 at 5:10 pm
I know all about this from various friends and family members. I do not envy your position, even though you are ‘at home’ and ‘are capable.’ Sometimes being different does not come with the bouquet of admiration and accolades we were led to believe it did. I wish it was better on your side of the border, too.
Rants are important.
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October 9, 2015 at 11:28 pm
Rants do help. 🙂 Being different more often than not means you fall through the cracks of the society that’s supposed to be helping you, unfortunately. Thank you for your support, Joey. It means a lot. 🙂
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October 8, 2015 at 4:41 pm
I was an advocate for foster kids and there is nothing more frustrating that trying to get services sometimes from the very institution you’re working for! Not to mention when the “experts” get involved and they all have a different diagnosis. Hang in there!
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October 9, 2015 at 11:25 pm
Ha! Yeah, getting a straight answer –or getting an answer straight in my own head– is difficult when everyone is saying something different. 😛 And you’re right that some of the “services” should be using the word a little more loosely. There’s so much lack of communication! Thanks for commenting, Jan. 🙂
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October 8, 2015 at 4:20 pm
Gosh! I feel for you. It is hard to know what to say. Negotiating the beaurocratic maze just to get a fair go! It is good that you write so openly of your struggles. Others need to hear this stuff. I believe in justice. When all else fails, there is justice. Right ultimately triumps and justice does prevail. Keep fighting the good fight. Love to you – Suzanne
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October 9, 2015 at 11:22 pm
Thank you Suzanne. Your encouragement helps a lot. It really is good to talk about this stuff, for the sake of other people going through it as well as myself.
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October 10, 2015 at 1:15 am
Absolutely. My daughter goes through similar with my grandson so I understand a little of how you feel.
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October 8, 2015 at 2:54 pm
We all go through this in varying degrees. Every day! Can’t we all just… start over?
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October 9, 2015 at 11:20 pm
Not when we’ve come so far already! Haha. But you’re right – bureaucracy is everywhere. Thanks for commenting, Emilio. 🙂
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October 8, 2015 at 12:51 pm
Oh, my sympathies! Honestly, there is no harder job than tangling with endless red tape trying to advocate for the people you care about. That can be absolutely crazy making.
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October 9, 2015 at 11:19 pm
Thanks, my dear. It really does drive me crazy. 😛
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October 8, 2015 at 12:32 pm
First of all, I think it’s great that you are advocating for your children and not just letting everything flow. They need that. Secondly, how can a nurse think that she has more say over a child’s way of doing things, than the child’s mother does? Oh no. That would never work. I’m sorry that it’s been so difficult to get your son an aid. I guess we are really blessed here, as my son’s school has always readily supplied aids throughout all his classes. He too is set to graduate right before his 21st birthday. Anyway… Keep up the awesome parenting! Your sons are lucky to have you.
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October 9, 2015 at 1:48 pm
I’m not sure where exactly the nurse thinks she’s getting off, but something will be done. Glad you’ve had a good experience with schooling – it’s inspiring to know that somewhere out there kids are getting what they need. Thanks so much for your encouragement, my dear. 🙂
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October 8, 2015 at 12:15 pm
The solution is, be born with enough native intelligence to figure out how to deal with the paper chase, or hand off the job to a lawyer, if you can afford it. Then again, if you can afford a lawyer you probably won’t qualify for aid. I wonder if there are paralegals that offer free legal aid in your community?
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October 9, 2015 at 1:44 pm
I have no idea, but it might be worth checking out. Thanks for the suggestion, Glazed. 🙂 Your comment has a very “stream of consciousness” feel about it. 😉
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October 8, 2015 at 12:05 pm
It’s okay to say yes to help, Linda. While you might feel like you’d be depriving others, getting your case handled faster will help clear the way for other people to get their cases heard. Bureaucracies are intentionally difficult to navigate, and you have the patience of a saint for sticking with things.
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October 9, 2015 at 1:39 pm
Ah, I do my best. Sometimes I admit I do drop the ball though. It’s such a job. 😛 You have a point about the handling of things. I’ll take that into consideration next time. Thanks, my dear. 🙂
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October 8, 2015 at 11:48 am
“Care givers,” in the public arena, sometimes don’t do either. I admire you in your quest for those that do.
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October 8, 2015 at 11:52 am
Ha! Yes, the irony of the “public service” worker. Thank you, my dear. 🙂
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October 8, 2015 at 11:25 am
You have a lot on your plate, Linda. Good thing (for both you and your family) that you are a fighter.
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October 8, 2015 at 11:38 am
I’m am, but it’s very draining sometimes. 😛 Thanks, CM, for your encouragement. It goes a long way. 🙂
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October 8, 2015 at 11:25 am
We went through everything you’ve stated years ago. We refused the cookie swallow test, without the test they can’t say that he’s incapable of eating and swallowing. In his day program last year they tried to push the issue again, our response was that he’s 32, if he hasn’t aspirated yet, he’s not going to.
Out best fight was when he was 6 and we were trying to get him into the local blind school. We had a doctors evaluation that he was legally blind (>400). The school district said had to be evaluated by their school psychologist (?). She spent five minutes with us then made the pronouncement, “he doesn’t act blind.” Sorry, he has his wheelchair today, we left the cane at home. Bottom line, they didn’t want to pay for specialty school, but weren’t set up to handle a multidisciplinary child, so they would put him in a separate room with a special Ed teacher and the two would vegetate for the day. We happened to luck out, it was an election year and the governor was in town for a fundraiser, we cornered him and brought up our issue in front of the media, next day we got a call from the school district that his request had been approved and could we please come in to sign the paperwork.
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October 8, 2015 at 11:37 am
Wow. That’s championship advocating. Good for you!
My son has aspirated once and that’s the problem. He has to be supervised so that he’s not eating what he shouldn’t – and there is someone there to watch him – so I have no idea what the nurse’s problem is.
Thanks so much for sharing your story. It’s inspiring to know it’s possible to get things done. 🙂
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October 8, 2015 at 11:41 am
I know we pissed the psychologist off. I have little patience with self-important people. I told her, “Oh, psychologist? So, you’re not a real doctor. We have an ophthalmologist who will state that he is blind.”
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October 8, 2015 at 11:44 am
Ha! Yeah, I’m close to doing that with the nurse. But she’s still the one forcing me to have to keep going back to the doctor. 😛
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October 8, 2015 at 11:17 am
I worry about the families who don’t have friends or loved ones that are literate, computer savvy or other things that are taken for granted when it comes to getting help for the physically and/or mentally ill, elderly, etc.
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October 8, 2015 at 11:32 am
Indeed. There are people out there who need far more help than I do, which is why I’m reluctant to say yes when someone offers to help me. I can do it, and in that I’m lucky.
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