Monday, June 25, 2012

Getting back on our feet

We've had a lot going on over here.

Besides the obvious (The Silencing of Maya and the news stories generated by the silencing---which I'm updating every few days) we were also all sick with hand, foot & mouth virus (which was exactly as miserable as it sounds).  Two and a half weeks later, we're finally all back on our feet. 

Maya was feeling better last week and got to do some painting . . .




 . . . but some days she was still so tired that she needed an immediate nap (which is not her style).


 
She continues to make great progress with her talker, and so does Parker (yep, really).  First, here's Maya, showing off how she is starting to put sentences together:




Maya loves to call Parker, but she makes a tiny, breathy "Pa" sound to call him.  Sometimes he hears it, but most often not.  I made a button on the talker that says "Parker, come!" and I've been teaching him to come when he hears it.  Finally, it's working :)  Take a look:



  
If you haven't already, we would really appreciate it if you could take a minute to sign our petition to keep this app available for Maya and its other users.  As you can see, it's her voice.  We can't let it go.  (And we would be especially appreciative if you would share it---via email, to listservs, on Facebook, through Twitter, from a banner on a plane, written in fireworks, whatever.)  Thank you!

  



12 comments:

Annie said...

I kind of can't take how cute Maya is. And how good she is with the SfY. She knows exactly where the words are she wants, she really doesn't hesitate. And I love her little shake of the head when you guys said "good asking." She was like "Darn right, good asking!" Anyone who would take the app away from her is evil.

Anonymous said...

School districts are buying ipads to save money and not getting full aac evaluations. Kids get something. Fives years from now, will they be where they would have with the correct, more expensive prescription? We do live in the time of instant gratification. You got what you want. The Easier, Softer Way. Im just saying.

Anonymous said...

Using your kid to protect friends who have lie, on purpose or not is adding digging the whole deeper. Ask your mither what she would do?

Vivie said...

Just signed.im a longtime lurker reading Maya's news and attempts of communication.

What you try and ultimately choose to do isn't nobody's business but your.just hope that you will win and maya won't lose her voice.

Vivie,Greece

Dana said...

Thanks Annie & Vivie :)

Anonymous, anyone who's spent any time here knows about the full AAC eval that we had, through the state, the way it's supposed to be done . . . so I will assume that you are someone new, brought in by the PRC/SFY mess and here to heckle. That seems like a productive use of your time.

My mither would likely wonder what in the world your last comment is trying to say.

grandma said...

anon, i'm the "Mither" and i would do exactly what my daughter did and get the best possible option that worked well for my granddaughter ----and there was nothing "easy" or "soft" or "instantly gratifying" about this process.

Brenda LoneStarr said...

The people in the disability community I know (including my husband) have often not been served well by the "best available" technology and have chosen to invent new solutions for themselves or appropriate other technologies to serve their needs. Maya using SFY rather than an AAC device isn't that different from my using a microphone gooseneck from a music store to mount his vent mouthpiece. He needs it to be able to breathe/work/get around/participate in the community, and what the official distributors of mobility equipment have available just doesn't meet his needs. We would be crushed if suddenly there was a patent dispute that caused them to cease and desist in distributing these parts...

laurels mom said...

Bittersweet. Praying for the best possible outcome for Maya...

The Wagner Three said...

Of course I love how awesome Maya is with SfY, though I admit I kind of go "la la la" thinking if only Harmony had a little more control of her arms, what could she tell us? It is amazing to watch Maya basically go "thank freakin goodness you people can finally understand me". I also totally *heart* Parker coming when called, you guys are just awesome with him, with Maya, you just are balls to the wall (in a good way!) with everything. I expect your mither is proud :)

Súkí aquí said...

Maya is adorable, and I love that she learned "thank you." Our twins are about her age, and still haven't learned those words no matter how many times we try to correct them.

Súkí aquí said...

Whoops, I meant to write, "please" in the comment above.

Clara said...

Mayita ( little Maya in Spanish) you are adorable! I love how she uses her app, she seems so proud of herself, with all the right to be! Still praying for the best outcome. What would happen when all the signatures are in at change.org? What would or should happen next? Hang in there, you have a lot if people supporting you!