Doh!

I bought the WRONG IPHONE.

Yep.  I don't know.  A lot is going on.

She opened it, LOVED IT, asked fifty times if we could use it now (we hadn't set it up yet).  Annie put in some time in the morning helping her try to use Siri, and it just wouldn't work, no matter who tried it.  At some point, Annie said to me "is it possible this phone doesn't have Siri?"  Nah, nah, of course it does.

An hour later it clicked.  No, the 4S has a Siri.

Lucky us, we have Walker, and he took care of business, installing the 4S operating system.  For last 24 hours we dealt with some shenanigans of having to greet Siri dozen and dozens of times, hoping it would eventually connect.  Came in from sanding lawn furniture this evening and said "Hello, Siri" and it worked!  Woo hoo!

Spoiled.

For Amy.  Don't tell!  It's a surprise!

I can't help myself, and this is something I will need to work on before we have kids.

The rationalization:

• Got it for song on craigslist.
• Yep, Amy is getting a computer for her birthday, which is an awesome and huge gift, BUT we don't want to send it home to her current house and dick around with the shenanigans there if it looks like she moving (keep on rootin for it, nothing in stone yet), and we need more time to get it ready for her, so she'll get this, too, and it will take the sting out of not taking the computer home yet.
• Amy HAS to learn to use SIRI.  One day, her Iphone 3s (with old school voice control) will break in a way that can't be fixed, and sooner or later, 3s's will be hard to come by.  So, while she still has the 3s to use as her main phone, we want to set her up with a 4 with only a handful of numbers in it so she can practice and try to learn SIRI without accidently calling and texting everyone under the sun.
• If she can't do it, Walker gets it!

Walker totally eggs me on, btw.  There is so much stuff we can't change, or is very very sloooow to change, and damn it is fun changing the things we can.

Speaking of things slow to change, in response to yesterdays email complaining that Amy had to wait three hours to use the toilet and that she was put to bed at 7 pm, staff told Amy she was a liar because "that's when we shower you.  that's your shower time" which DOES NOT MAKE SENSE as an excuse, and also doesn't make Amy a liar.

I can't write here what I told Amy about all that, but if you know me in person, you know that it was "vibrant".  

Shipped!

Amy's computer is on its way to us!

Back to the bottom.

I woke up this morning and looked at my phone and there was the  email --  THE computer was finally being released.  YAY!

More good news is maybe coming.  I got an email last week saying "please call so-and-so about an opportunity for your sister."  Many conversations followed, and I'll hopefully have more to say later this week.  Good things on the horizon maybe.  YAY!

But Amy doesn't know about these things.  She'd be impatient for the computer... and it is her birthday present.  We need to know more about the opportunity before we let ourselves get excited about it.  And it wouldn't matter with the situation she's in.  She's always seeing good on the horizon, but so very rarely good right in front of her.

She's lonely.  She's mistreated.  Her house sucks on a good day.  She is grieving her mom.   Her phone stopped working this week.  Without communication, things have gone from bad to worse.

On Friday, a staff member refused to provide care to Amy, and that is a novel in and of itself.

On Sunday, the same caretaker who doesn't feel she can care for just Amy alone took the whole house to a nature center -- alone.  At some point Amy told her she was going off on her own to clear her head, and drove off down a trail.  Next think Amy new, the police were looking for her.   Amy "drove off" and got lost, according the caretaker.  Amy was told she was gone "for a long time." In 25 years, we have NEVER lost Amy.  She is tethered to 250 of pounds wheelchair that can only move so fast.  How far could she have gone?  How long could she have been?  Did the care-taker even look for her before she called the police?

Amy called to tell me about this -- from the house phone. She was under the impression she was in trouble. I tried to calm her.  I told here there was no way she was in trouble.  This was an overreaction and a misjudgment on the part of the caretaker.  Everything was ok.  No one thought she was bad.  And if she was in trouble, we'd deal with it.

Afterward, her staff accused her of lying.

She freaked out, started crying, she felt "the bomb inside about to go off".  And so the staff drove her down the hall to her room, and shut the door on her.  Driving Amy's chair without her consent is picking a person up and carrying them away.  Closing a door is the same as locking it.

Then, they threatened not to shower her if she didn't calm down.

You need to tell your Q (case manager) about this the next time you see her, I told her (I'm not a total asshole, btw, we are working really hard to transition away from me being Amy's bullhorn).  "I saw her today", says Amy, "but I didn't tell her".  Of course she didn't.  The staff will say, what?  None of that happened.

Ok, Amy.  We will write an email to your Q tomorrow, together.  Ok?  "Ok... but Al, I did lie."  What do you mean, you did lie? What did you lie about?  "I don't know, but they said I did."  But about what?  "I don't know, they didn't tell me."

Insert here me swearing, damn them all to hell.  And then we sang for a while to blow off steam and get the feeling of needing to cry out of the back of our throats.

"Al, I started reading A Prayer for Own Meany today." Oh, Amy, you are going to love it.  "I know I will, it reminds of me of Simon Birch*...  I don't deserve to be treated this way!  I have to get out of here!"  I know, babe, but don't go down this road again right now, it doesn't help you.  I'm really working hard.  I'm really trying to get you out.  "I know.  But I don't deserve this." I know.

*This is the same thing she told me the first time I tol her about the book.  Today I looked up Simon Birch.  It's a movie from 1998. based loosely (very loosely) on the last half of A Prayer for Ownen Meany and with a different ending.   If she can make these kind of connections from memory, think what she can do with a computer?

Don't tell Amy!!!

I'm obsessively checking Lenovo's website every day.  For this to be released:

 The IdeaCenter a720.  A giant, multi-touch, all-in-one pc that can be used like a tablet or at an angle.

I know its going to be a lot of work, but this is the computer that will connect Amy to others.

She won't have to use a mouse (not enough hand or eye control for that kind of coordination), and she'll be able to use an onscreen keyboard (less looking back and forth from one object to another).  The computer can be angled as needed, and is intended to be, so this won't be some horrible erector set contraption built by me and involving too many zip ties.

I plan to install a remote access program so I'll be able to control her computer in her home from my computer.

We'll be able to Skype and watch tv shows together.

Hopefully, we'll get her blogging, using facebook or twitter.

This has the potential to connect her to other people, and give her more control over her life.  At the very least, we are going to love talking face to face.

It's another big buy, and the last big buy, the bike?  Still not getting used.  Still waiting for her kind, but ineffective case manager to get her a PT appointment and get this going, or even to give us her insurance info so we can do it ourselves.

But a computer doesn't required a doctor.

Oh, and I plan to bolt this sucker to a table that Amy can pull up to, so that it won't crash to the ground on day two.

Damn you, Siri!

I thought she'd be my new best pal, but Apple's Siri can't understand Amy's voice.  Cousin Cliff kindly let us play with his phone -- we may have made  some accidental calls to folks on his contact list, so really, THANK YOU cousin.

In my pretest impersonating the pauses and pronunciation of Amy, it was working, but for the life of us, it doesn't understand real Amy.  The voice control function on Amy's iphone 3 DOES work for her, so we expected success from Siri.

With Amy's current phone, she can call people and control her phone using her voice, but with Siri she'd also be able to access her calendar, and send and receive text messages.

I'm looking into other outlets, but this is one of the few devices that would accommodate both her vision problem and her limited use of her hands.

Part of me is tempted to bite the bullet, cut down her contacts list temporarily to a handful of people who wouldn't mind a lot of accidental calls and text and let her practice, practice, practice.  Worst case scenario, main man has a iphone 4.

Iphone 5.

We got Amy and Iphone 3 for her birthday.  She told me today she heard about new voice control features she's VERY interested in.  The iphone 5 will allegedly have enhanced voice control and text to speech, Amy's dream, and mine, too, given that I get 5 to 10 voicemails on a given day from her.


Man, is this what being a parent is like?  I vaguely remember haranguing my parents for things, but there was not iphone back then.  Holy crap.  Do kids today covet snowboards AND phones?

I need a job.  A good one.