The Fight to Keep a Voice

I will admit right now that my point of view regarding this is slightly biased and emotionally charged.


In case you haven't heard, there is a petition on change.org and a legal battle (court filing docs) going on between Prentke Romich Company (a communications device company) and Speak for Yourself (an app based communications company) and here is synopsis of the petition on change.org from Dana Nieder's blog Uncommon Sense:

"First, the link to our petition on change.org asking that Speak for Yourself be returned to the App Store immediately and allowed to remain there throughout litigation and regardless of the lawsuit results. Business disputes should have business resolutions, and those who need this app to communicate should be assured that they will not lose it. (If you agree, please sign and share-thanks!)" 

To get a better understanding of why Dana has started the petition, please take a few minutest to read about her daughter Maya at Uncommon Sense: The Silencing of Maya.


As stated above part of the issue is that Apple removed the app, <--- Time online article, from its store without a court order requiring them to do so (just pressure from PRC). I understand there is some potential liability to take into consideration, but shouldn't the individuals relying on this app be taken into consideration as well? How will they receive any updates from SfY? If PRC wins, will this app disappear from their i-pads? Honestly, Dana is the leading voice regarding this issue and for a better understanding of who she is and how this affects her family, please take a few minutes to peruse her blog:

If You're New Here 

(an introduction to Uncommon Sense)

or

(Goliath v. David, AAC style

(the first post about SfY and PRC)

Now here's a couple of numbers to consider:

PRC's equipment costs range from $3K (1 model only) to $16K.

SfY App: $299.99 plus the cost of an i-pad.


It is likely that Rae will need a device/app like this and with medical expenses, equipment costs, and rising costs of virtually everything...well...personally, we can't afford PRC's equipment. I'm sure insurance helps cover some of the cost and there are places to apply to for financial assistance (which 90% of the time we don't qualify for) which means (for us) the SfY app (or something very similar) would be our first choice. Now I am on pins and needles waiting to find out what will happen to Maya's voice because the outcome will most likely affect my own child.


If you'd like to read other articles regarding PRC and SfY, Dana has provided continued updates and links to stories relating to this legal quagmire. Check out: Uncommon Sense: The Silencing of Maya: Links Round-Up.

Cat-astrophe Averted!

Great News! The reinstated regiment of cleaning and locking up my three kitties has paid off and so far (knock on wood) our PT is no worse for wear.

*huge sigh of relief*

When I first wrote about the possibility of loosing Anna, it was surprising to some that I felt so close to our PT. In my defense, she comes into our home, works with our daughter every week (that we're in town) for an entire hour, offers me support, suggestions, her corner chair on wheels, smiles, encouragement, and just about anything else she is able to give. Anyone would feel close to someone that does all that for your family, but those aren't even the most important thing she gives.

Anna trying to sooth a very mad Rae.

She gives her affection and love to our daughter and that makes a HUGE difference. It is a connection that goes beyond just your random doctor or the specialist you see twice a year. She's a friend.

Recently. we missed three therapy sessions with Anna due to a death in the family. After missing week number two I was about to become a basket case because I knew I didn't have all my therapy "stuff" and therapy is the only thing we have.

When we returned, I was excited to know that therapy would resume and at the same time dreaded the "clean-up." Now, I don't expect my husband to run around the house with a vacuum like I do so it was no real surprise that our couch was covered in enough hair that it looked like we cloned a cat. Tufts of fur were dancing across our floors and the cats looked like they ruled the roost. I had to nip that in the bud right away...Anna was coming in a few days and this placed needed to be hair free (like there is such a thing).

After extensive fur removal, we were finally as ready as we were going to be for our reunion with Anna. Rae was dressed, fed and watching Curious George while we waited for the door bell to "buzz."

"Buzzzzzz!"

I scooped up Rae and opened the door. It had been three weeks and there was no telling how Rae was going to handle the reinstatement of her therapy routine or the reunion with Anna.

She SMILED!

Her grin was from ear to ear, her legs started swinging, she started babbling, and even giggled a little. She remembered Anna and was happy to see her. I was so thrilled that she recognized this wonderful woman who works with her even when she is behaving like this...

Anna is, like another mother/blogger* said, our daughters friend and nothing can replace the important role she plays in Rae's life. Thank you Anna for sticking it out in spite of your allergies.

*If you are interested in reading about the journey of another family please visit Dana Nieder's blog Uncommon Sense.