Monday, October 24, 2011

An app to set a voice free

Celebrating my mom's birthday at my house, after cake we were all sitting around watching 60 minutes, a story on Steve Jobs. None of us have iPhones, or iPads the only iPods we have have spinning wheels on the front of them. But we are always amazed at technology, and this mans story.

So after the Steve Jobs story, it goes into a story about parents who love this one app, specifically an app that helps people with Autism one we know has Autism, so I pick up the remote to switch the channel to watch the new series "Once Upon A Time" we hear these words from the 60 minutes episode...

In the weeks since Steve Jobs died, there has been an outpouring of gratitude from his fans for the way his inventions, like the iPad, changed their lives.
Among the most passionate are parents of children with severe forms of autism, especially those who can't speak and appear hopelessly locked inside themselves. Those parents often say these kids understand more and know more than they're able to communicate.

Myself. My sister. My Father. My husband. My Mom. We ALL heard it. We just looked around the room, and tears ran down my face... did we all just hear the same thing?!
Frances isn't Autistic... but she has Dystonia  This has stopped my sister from speaking since she was 15 years old. She's 30. She can hear, she can think just fine, but her speech is what has been stopped. (we do finger spell some things, but the Dystonia has gone to her hands a bit too, so some letters are hard to read)
We all know too well that Frances is trapped inside herself. That she can't truly express how she feels most times. Limiting her story or her input to a finger spelled word, yes, no, thank you, and I'm sorry are her main signed words, or what she types into her Sidekick for my parents to read (after they get their glasses to read the words she types) 
How is Frances? I mean as an update she is good. She had DBS (Deep Brain Stimulation) surgery done years ago, she's tried the drugs with none of them working, some causing BAD hallucination side effects. Yes she is better off with the DBS surgery, with out the generators she would be 1000 times worse, but no speech, she is silenced. 

Until now... this app. it's new to us. Well the whole world of apps is. Yes we live under a rock, I mean we KNOW of apps, and how people love them. But our VERY budgeted cell phones allow us phones to talk and text on, so again outside of an iPod with a wheel on it. i-anything doesn't exist in our world. 
Of coarse we went right to the laptop and googled the app, it's called Proloquo2Go and found out that you can get it on the iPad or the iPhone, we were thinking that Frances doesn't need a huge iPad to lug around, why not an iPhone. I can't wait for the field trip for us to go into the Apple store as newbies.
But newbie's that are grasping onto some sort of hope that Steve Jobs created something that will let my sister not only talk through this, but be able to express her emotions as well. Where we don't have to stop and read what she is saying, that we can sit around and have a conversation and she can but in like I always do! 
I mean imagine, if you have a sibling, and when you talk at the table with family, and your all talking over each other, and you can't get a word in because they keep cutting in?! We want that. Blue has never heard his sister-in-law, and neither has my best friend.
I mean to be around my sister, my family and to have her chime in after 15 years of silence... I mean... just trying to wrap my brain around the fact that my kids will be able to hear and communicate with their Aunt... fingers crossed this works out, that this is a technology that will not fix my sister, I understand that... but a technology that  could set her free. 

Here's to you Frances, and to hearing what you have to say. ALL of it. 

1 comment:

Anonymous said...

Bob and I have every hope........Susie DESERVES this in her life.She has gone way to long without something like this. Good Luck today !!! bring It Home Susie, Bring It Home !!!!! Love & Prayers Cindy & Bob