Friday, March 9, 2012

Amy's Voice

If you read nothing else of this post, skip down to the italics.  These are Amy's words.  

From NewQ:
[Sister Two] said that she can meet next Thursday 15, 2012. I think that 1:30pm at TC will work. 
She also expressed that the staff was at the last Meeting!!! Yes they were but my opinion is that the staff works directly with Amy and are the first to being her caregivers. I believe that the insight from the family, Amy and staff would be important while they are in attendance. The meeting that was scheduled for her annual meeting, staff was left out and the meeting was concerning Amy her progress and her goal. I feel that no one can give insight but the staff that works with Amy. If training or question or concerns are needed that staff should be aware first hand of the families expectations, wishes etc.

Thank You 
[New Q]
We did meetings with staff for over a year.  Amy cowered.  Express her grievances in the presence of people she would be completely alone with later, with no one else to turn to?  Right.  Amy would say something, staff would say that it wasn't so, or that she was misinterpretting, or thtat she was lying.

Email from me, to [New Q]:

Hi, [New Q],

When we email you about issues, we are contacting you with what Amy has asked us to communicate with you.  Amy called me tonight about Thursday's meeting. Below is what Amy had to say. These are Amy's words.  She asked that I stress this.

It took about 30 minutes of focus for Amy to get these words out and how she wanted them.  In case anyone doubts these our Amy’s words, I’ll explain the process.  First, Amy tells me little bits and pieces of things, I write them down and read them back to her, and she tells me what to keep and what to discard.  The more she writes the more comfortable she gets, and the more fluid her sentences become and I type as fast as I can to keep up.  Each time we add another sentence, I start reading again from the beginning.  If something doesn’t sound right to Amy she stops me and tells me what changes to make, and then I back up a few sentences and start reading it to her again.  We do this again and again and again until Amy is satisfied with what she is expressing.  

It’s basically how we all write when using a computer, Amy just does it using her voice and another person.  

"I froze up when I tried to talk to [NewQ] the other day and couldn't tell her what I wanted to.  

They want me to talk to people in the meeting, and [New Q] really wants me to do it on my own, but I'm not sure I can do it.  I'll freeze up again.   I can tell [SisterTwo] and Dad before the meeting, and they can help me talk about it, get me started on each of the points.  It's a whole lot of stuff, and it's hard to keep track when I try to talk about it, and I can't do it alone.   

[New Q] wants me to tell staff when I have a problem, to tell them directly, but I don't feel like I can because of things that have happened before.   A lot of people doubt me and what I have to say like when I ask for my braces of or for a cup of tea or when I say that someone isn't treating me right are just some examples.   I feel like they don't give a thought to what I say.  I think they don't realize I'm as smart as I am.  Sometimes I don't know what's going on, because people aren't telling me, but I know they're talking about me.  And because of this, other times I think they're talking about me when they aren't.  

I don't want staff to be there at the meeting.  I would let them [staff I don't have a problem with] be there only so they they know that I'm not talking about them, but I'm afraid they'll come back and tell the other staff [who I have a problem with] that I was talking bad about them.  I know that's what they'll do.  It's what happened before.  You know how word gets around.  I really don't want staff to be there.  As it stands, I only have a problem with [ShitTalker].

I don't want staff to be there also because I don't want them cutting me off and getting in the way of my train of thought.  People just cut me off about what I'm trying to say.  I don't get to express myself.  

I think its better if none of the staff are there.”
Amy is not only a whole person, but an amazing whole person.  I love this girl.   


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