Thursday, June 28, 2012

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:

(an introduction to Uncommon Sense)
or
(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.

Wednesday, June 27, 2012

Mission "Eat"

I'm raising the white flag and conceding victory to my 21 month old daughter. Rae wins!

We are abandoning our campaign for the sign "More*" at meal times. We have tried to teach, encourage, bribe (fruit bars, toys, or animal crackers), and compromise with her (just tap the tray for Momma). We are now done (for the time being). The closest we ever got to seeing "More" was a tap or smack on her tray and even those were inconsistent. She can't bring her tiny digits together and ask me for "More."

Her arms aren't just weak. They are REALLY weak. Sometimes, when she's having a rough day, I might as well be holding an armful of cooked spaghetti noodles. So, in light of repeated failed attempts to solicite the sign "More" from Rae we have decided to work on something we think she can handle. The logic being... If she can pull a spoon to her mouth she can sign "Eat."

So, now we are moving forward with Plan B, or what I am dubbing, Mission "Eat."


Part of the special needs journey is learning to adapt to the abilities of your child and accept that what you think (read as hope) they can do and what they can actually do aren't always the same thing. Yes, I know this is also true for all parents out there, sometimes it just feels a little different. The average toddler (which technically Rae is considered a toddler even though she doesn't toddle) is quite capable of lifting their arms, pressing their fingers together, and tapping the tips to ask for "More." Rae, apparently, is not...at least not yet anyways.

Here's to hoping Mission "Eat" doesn't end with another white flag waving in the breeze.

*for more on "More" read my previous post Doing More

Tuesday, June 26, 2012

Sun Beams: Joyful Progress


Here are some wonderful developments that have occurred over the last couple of months:

1. In May, we managed to get our first studio portrait of Rae prop sitting! That is a huge deal and even though she is only able to prop sit for about 20 to 30 seconds I'll take that kind of progress over no progress any day. I can't share the pic, because it isn't mine to share (copyrights), but here's one of my most recent favorites of her sitting up on our couch.

I call it, "Galactic Hair Day."
Rae's hair was in pigtails during the night
and this look was the end result. 

2. Rae has figured out how to "swipe" her Daddy's i-phone while playing her apps. When I ask her to touch the cow she takes her tiny hand, swipes our digital bovine friend, and is rewarded with a loud, "Moooooo!" This enthralls her and clams her when having a complete meltdown. Thank you Steve Jobs and all you wonderful app makers!!

video


3. She has started standing again! You know how kids stand up (while you hold their waist or arms) and bounce...well Rae quit doing that ages ago. It really bothered us. Then out of no where, we were in my Dad's back yard and I decided to try to stand her up on the rough concrete pad (barefooted) in front of his shop and she did it! I was shocked. I really didn't think she'd put her feet down. She has since done it once more and we're hoping this continues.

Rae standing proud.
She decided she was finished right after Daddy took this picture.

4. After months of searching, I have stumbled across a sippy cup that she will (and can) use! It is a 5 ounce Tommee Tippee cup with handles. She can chew the spout till her heart is content (she's tearing her bottle nipples to shreds with her incessant teeth grinding and chewing) and it doesn't leak! Since Rae's arms are so weak any cup without handles is difficult for her to manipulate and thanks to this sippy cup I can happily bid our bottles farewell!

Rae's newest sippy cup by Tommee Tippee.

5. We've been working with Rae on closing her lips over a spoon and pulling her food off on her own instead of us pulling the spoon up thus wiping the food off into her mouth. It takes great restraint to not do it for her (especially when we need to finish so we can go somewhere), but it is for the best. I'm happy to say that all the effort has paid off. She is pulling food off her own spoon! Now we get to work on getting her to use her tongue to lick food from the sides of her mouth. Yup, we encourage playing with your food in this house.


I have saved the BEST for last:

6. Rae said, "Da da da," to her Daddy (who has been patiently waiting to hear those words for months) while he was feeding her breakfast. As soon as I heard it, I jerked my head in their direction and asked if I just heard that correctly. His beaming smile said it all. Yes, we heard correctly. She said, "Da da da," and that made her Daddy's day. It was the first time she's said those sweet words. I wish I had captured that moment on video, but it was over in the blink of an eye. We hope to soon hear, "Da da da" again, but for now we wait.

Rae & "Da da da" on Father's Day.