Monday, June 9, 2014

Five minutes

A little incident we had last week.

One of the things about being a special needs family, is that sometimes little, insignificant seeming things become a big deal. Five minutes suddenly feels like an eternity and you find yourself fighting over five minutes with your kid's school.

Five minutes.

And it's not just about Finleigh. I'm stuck too. I'm stuck over five minutes. I'm a grown woman and I want to fight over five minutes. It doesn't make sense... but it's driving me crazy and I can't get over it. Like Finleigh, when she gets stuck on something and obsesses and obsesses over it. That's me. Obsessing over five minutes and how that five minutes has thrown me into a tailspin.

A tailspin that I found myself crying over this morning.

This morning, I was crying over five minutes. A ridiculously small amount of time in my old life. An amount of time that my previously flexible and easygoing self would not have cared about and would have happily given in on.

And while I'm at it, can I just say how hard it is to judge that line between what is "advocating" and what is "complaining" or "asking for too much?" Because here's been my experience so far. If I ask for more respite time, I get verbal pushback. I find this pushback unpleasant (which I suspect is the goal) and so I don't ask for said respite. Then, when I finally come to the end of my rope and ask for more because I just need it? I'm told I'm being defensive. And then I have to break down and cry in front of a bunch of professionals before I am heard. And then I am told I should have asked for it sooner.

Now, it is likely that I'm being a little defensive. I don't like asking for help. However, it irritates me, the way things are done when it comes to doling services for families in need. For you see, they don't offer things... not generally. They expect you to go on their very vague website and do your research and then you have to ask for it by name. And if you don't... well, you don't get it. And heaven forbid you're having a good day when you see them, because then you don't need more services.

And now I'm just getting a little bitter and likely attributing motives that aren't there to a woman who's spent her life acting as the mediator between the government and families who need their services. And who am I to be bitter about that?

After all, I'm the person with the hat in hand because I cannot afford thousands of dollars in services that my daughter needs. So I depend on the taxes of others to pay for these things. Like respite, OT, PT, speech services, behaviour therapy.

But I am terribly aware that this is all just a business with a bottom line. Yes, they're services, but they come at a cost. They are not free to me. They require paper work and opening up my life to people. They require losing a fair amount of privacy and control. They require me to share my darkest moments, my hardest struggles, and admitting that I cannot handle my daughter on my own.

It. Sucks. And I hate it.

And I can promise you, that if we were independently wealthy and had more money at our disposal, I would tell the government to stick it and I would hire my own help on my own terms. And I would gain my control back. And my pride. And my privacy.

But as it stands right now, I'm fretting over five minutes and feeling very, very tired of this whole run around. I'm feeling uncomfortable with myself and this whole situation that I'm in. And honestly, short of winning the lottery or choosing to do this whole thing on my own (which is really not an option), I don't see any way out.

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