Wednesday, January 4, 2012


It takes some work:
Hi, [New QSP],
Amy asked that I drop you a note to let you know she plans to stay up till midnight on New Year's Eve so you can alert staff and there won't be any problem day of.  I'm also putting together a new year's care package for her that I'll send home with her after Christmas -- party hats and noise makers and sparkling cider, enough for everyone. 
Thanks, [New QSP].
And some repetition:
Hi, [New QSP],
Just following up.  There is a bag under the tree with party hats, beads, and (fairly quiet) noisemakers, and a bottle of sparkling cider there also.  Please alert staff that Amy plans to stay up till midnight.  She's very concerned that staff won't "let" her.  I assured her that is not an issue, as she is an adult and can make her own plans.
And some frustration:
I am unsure of how to respond to this email as the staff at the house is to clock out by 10pm. I will inform my boss of your wishes for New Year’s Eve and inform you on the arrangements we have discussed asap.

Thank You
[New QSP]
And persistence:
When we've raised this issue in the past -- that Amy was under the impression from conversation with some staff members that she needs to be home in time for them to clock out by ten, and that they can't assist her after ten -- and been told again and again that this is not the case, that if Amy needs care after ten pm then staff clock back in, and that Amy will be cared for at the house whenever she needs care. 
But it pays off:
Hello Allison,

Yes the staff is allowed to stay awake to assist Amy if she needs it during the time she is awake. Amy can enjoy her New Years the way she wants too! Staff is aware of Amy wishes and will be paid according to the time Amy needs them. Amy is out with her father now and I called her on Thursday to inform her of this and to inquire if she want or perfered to be in her room or in the family room with staff. Amy choosed not to talk to me at that time. I called today to discuss it with her as well and she was with her father. I have inform staff of the details for tonight and feel that they should not have any problems with the request.

If there is anything else that I may have left out or missing since I didnt talk to Amy further concerning her wishes for the night, please let me know and I will inform the staff asap


Thank You

[New QSP]
They worked it out!  She caught a movie and lunch with Dad, had sparkling cider with her housemates to celebrate, and watched White Christmas that night. She opted to ring in the new year lounging in bed.  A low key, but nice New Years Eve where SHE was in control, even if only sort of... and even if took three weeks and more emails that shown here to accomplish.  
I'm glossing over the frustration of the situation, how we opted to skip a trip for fear that things would not work out (because they usually don't), the nervousness that consumed Amy as she worried if that if she asked, she'd be told no.  But right now, I'm happy. 

Amy having control over the little details of her own life is the root of most of what we so loudly push for.  Amy IS allowed to stay up as late as she wants -- at least on New Years Eve. 
In 2012, we will get them to understand that Amy can do whatever she wants, and not just on New Years Eve.


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