Is respite care realllly a break if it takes more effort from me to coordinate than watching my own child does?

Before I begin, a hilarious video from fellow blogger Whitterer On Autism



Now, giggling finished, on to the whining.

Don't mind me, I'm just feeling really discouraged. I know that the respite folks are doing their best, and to their credit they got me someone on very short notice last Saturday, which was wonderful and very much appreciated.

However...

We've got 48 hours that expire on April 4th. We've used 5.5 of them, and we're going to end up losing hours if we don't use as many of these as possible before they expire. This will be the 2nd or 3rd time the hours have expired without me being able to get use out of them, and it's frustrating me. The person who we'd gotten set up with to watch Jaymes has shingles, and obviously can't be around him right now, and apparently there isn't really a fall back plan. It had been my hope anyway, to have a couple people because availability is an issue and that would open up more times.

The battle for respite has been going on for months and months. I think I remember going in and doing an application with our original case worker last summer. That's a long time ago. I'm losing the desire to constantly call, organize things, ask respite folks their schedules, organize theirs with mine... Because all it's gotten me is 2 days without Jaymes. Once for an hour and a half, and once for four hours.

I still do think there's a way to use as many of those hours as possible by the 4th, but no one will call me back! I do have the phone number for someone "higher-up" but I'm really not wanting to keep doing that, it doesn't seem fair to the person we're supposed to be dealing with, and I doubt the director of the program wants to deal with me on a regular basis.

This is just frustrating. I know it's a free service, and a gift for all intents and purposes, and I appreciate it. But if it's a gift, why can't I actually HAVE it? I'm not being unreasonable, I've said send ANYONE (they're all trained and background checked, at this point I'll take any living, breathing human body!), at ANY time on ANY day. That's pretty flexible!

I'm not sure how the losing hours thing works. I know that a few people have told me that the funding is being cut, and that they will not continue to give us the 48 hours if they see we're not using them. I wish there was a way to show on paper that the reason we're not using them is because the hours are there but the people are not. It's not my fault or Jaymes, and we shouldn't lose out on hours because of something we cannot control.

I do not like being the "squeaky wheel". It's not comfortable for me, I'm not good at it, and I always end up feeling like a demanding, unreasonable witch even though I'm always polite. I'm not sure what to do. I don't even know when the person who handles Jaymes respite is in the office, and emails go unanswered.

I'm very, very frustrated.