The meeting with my supervisor yesterday, went as well as I had expected it to go...Frustrating as HELL!
The gist of our conversation is as follows; she doesn't understand how having someone I know accompany me to work, or me moving out would help my situation. It wouldn't make it any safer because I'd spasm no matter who I'm with.
"This isn't a staffing issue, Andre," she said, "...We are sending staff with you..."
I acknowledged her points, then I added that I wouldn't have worry about trying to direct someone, and be understood mid spasm if the attendant already knew me and what to do. My supervisor replied to this by suggesting that I take the bus, (MobilityPlus,) if I'm worried about spasming, so I reminded her that I already do.
I went on to say that what happened on Friday, isn't the sole incident behind my desire to move out, it was the last straw - my tipping point. However, a lot more was said yesterday, but I'm getting really anxious again writing just this much, so, long story, short, my supervisor is going to put me back on the waitlist for outreach, (in-house care,) as well as the waitlist for Kiwanis, which is in my hometown. This means that I'll be here for awhile yet, unfortunately, and even though I like living on my own, and having my own place, all this ILC crap is extremely taxing.
God, I hate confrontations, but I am going to fight this, and maybe even get a lawyer.
In a previous post, I mentioned "a few" of the issues that I've been having with ILC, and that I let a heck of a lot slide. I also mentioned how it's a struggle to get an attendant to accompany me to work and book events. Well, listen to this.
I was invited to a day camp to speak to 6-11 year olds about real life superheroes, and the talk itself went really well. However, I wasn't allowed to take any of the Mooregate staff, (the PSWs I see everyday,) so, I went out with someone who didn't know or understand me well so I was practically on my own, and spasmed and almost drove off the curb twice! Next month, I work at Extend-A-Family, and ILC is trying to make get there and back totally on my own, and only have an attendant for the first and last 15 minutes just to set me up, and then get me ready to go back to my apartment.
This is the last straw! I'm not going to jeopardize my safety for anything, hell no! I'm done, and I have a meeting with my supervisor to tell her as much!
Some of you know, I haven't been very happy with my current living situation, and have been exploring other avenues. I deal with a lot of the crap that goes on here, I mean, it's extremely frustrating, when people find dirty dishes in my cupboards on a regular basis, and being judged all the time for the stuff I do and/or don't do, but I deal with it. However, what I cannot deal with is this; ILC is making it really hard for me to get out and about with an attendant. So, working, and doing book related activities are a struggle because people at ILC think I'm not independent enough, and shouldn't require assistance for such things. Although I enjoy speaking, and showcasing Starkeeper, these tasks are part of my jobs. Furthermore, don't they realize that if I could do said tasks on my own, I definitely would?
Sadly, finding someone to assist me out in the community is not a new issue. It came up when I started modeling, which is one of the reasons why I put my modeling aspirations on hold, but I digress. One of the avenues that I've been exploring to remedy my issue is Direct Funding, which is a program that gives you a chunk of money each year to hire your own attendants. However, DF might not meet all my needs, and if I apply for it, I would be taking a risk because I don't know how or even if Direct Funding would work for me.
I don't want to stay where I'm not happy, but I don't want to put myself up a creek without a paddle, either. So, do I trust myself to make and/or find paddles when I need them? I don't know.
I met with two lovely ladies from Extend-A-Family today. Earlier in the day, I was spaztacular - I was having really intense spasms from the moment I woke up, and I thought, "excellent timing, spaz! I have stuff to do today!" My highly annoying and ever-present body quakes brought me back to a debilitated mindset. I felt trapped and limited by my disability, however, today's meeting totally pulled me out of that powerless way of thinking, allowing me to take another step toward my goals.
I really want to let people know that they are not alone, and that it can get better. It's getting better for me. You know, it blows my mind to realize that all of the exciting things that have happened/are happening in my life, stemmed from an idea and desire to express myself and my message through a book. I truly enjoy working with Extend-A-Family for many reasons, but the following two are the ones that jump to the forefront of my mind. I feel like I'm appreciated and valued for who I am in my entirety, and secondly, I am starting to find my voice, which is actually helping people. We lined up a few possible opportunities to showcase Starkeeper, as well as another speaking engagement, which is uber exciting!
Lastly, I am feeling a tad limited and restricted by ILC (Independent Living,) specifically their policies related to assisted living and assistance while out in the community. However, I have no regrets about moving to Mooregate, as I've met some really awesome people, and I've learned a lot about myself. Though, if I am feeling held back, maybe it is time to start looking into other avenues of getting the assistance I need, because one thing is for sure, nobody is going to rain on my parade!