Did a state agency really just come through for us on the first try, in a timely manner? I'll truly believe it when this paper voucher turns into a new Big Box of Words. For now, however, we are allowing ourselves a little bit of celebration and a lot of renewed purpose towards helping Schuyler accept and flourish on this unnatural way of communicating.
Besides, the new one comes in pink. God help us all.
Besides, the new one comes in pink. God help us all.
I think so, too. And one that wasn't available four years ago when we started this whole journey.
ReplyDelete"New advancing Monster-Slayer, now in *pink*!!!" Come on, that's the coolest thing ever, if you're an almost ten-year-old girl :)
ReplyDeleteThaaaat rocks. It even sounds cool: BBOW TNG
ReplyDeleteWill she own it outright like her current one? Or will it be a loaner from the state?
That's awesome! Funny, I was going to write a comment a couple of posts back asking if there is a technology upgrade program for Schuyler's BBOW as there is with my daughter's insulin pump, which, incidently, costs about the same as a BBOW and is pink as per my daughter's request.
ReplyDeleteWill she own it outright like her current one? Or will it be a loaner from the state?
ReplyDeleteIt'll be all hers.
Awesome. Here's hoping that the government paperwork miracle continues through and it's all yours in a matter of a few weeks.
ReplyDeleteThat's terrific! I think getting to pick your color is a really nice option for medical devices like this - I recently got a new green insulin pump dubbed "Kermit" by my hubby. It makes all the difference in making it feel like it's mine. I'm sure Schuyler will get a big kick out of that part of it.
ReplyDeleteAw, that's such great news!!!!
ReplyDeleteWoo Hoo! Congratulations!
ReplyDeleteLaura
PINK? God help us all indeed. LOL
ReplyDeleteI've said it before, I'll say it again --
ReplyDeleteI fully expect that within a couple years, you will be reporting that Schuyler has somehow figured out how to hack her BBoW in such a way that she can get online with it, and that you've caught her trying to use it to break into the computer network at Pixar's animation studios so she could design her own monster.
That is the best thing I've heard about my fair state of Texas doing since...well...ever,maybe... Go, y'all!
ReplyDeleteJust wait until she starts adding stickers.
ReplyDeleteWe surely must have a beer in honor of such a momentous occasion.
ReplyDeleteWoo hoo! I hope it's not quite as heavy for her to lug around-- I always think of what a pain that must be especially when it's hot outside.
ReplyDeleteShe has a little backpack that she carries it in, so it's not a big deal.
ReplyDeleteCongratulations in the future to Schuyler.
ReplyDeletekudos, salutes, hats off... to the three of you. You really are an unbeatable team. You are so lucky to have each other. You touch many hearts...
Barbara
Yea! I'm so very happy for you guys! She must be totally geeked about getting a new one!
ReplyDeleteYay Schuyler! Any ETA on the new BBoW?
ReplyDeleteCongratulations to Schuyler for getting the new BBOW, and congratulations to you and Julie for avoiding a battle to obtain it.
ReplyDeleteI'm curious, though--do you have any thoughts on why the approval process did not involve a battle? I read so much about how requests for equipment for children with special needs are met with rubber-stamp denials.
I guess I'm just surprised that the system actually worked right the first time, and while I am absolutely delighted for Schuyler, I'm wondering, "Wow--how did that happen?"
I hope this is not an impertinent question.
Sue
Not at all, it's an important question, and I'm sure I'll write more about it as we get closer to Pink Day.
ReplyDeleteThe short version is that this funding source wasn't available at the time we got her current device. It's the Specialized Telecommunications Assistance Program (STAP), managed by the Texas Department of Assistive and Rehabilitative Services, Office for Deaf and Hard of Hearing Services.
I believe the original intent was to provide deaf citizens with phone equipment, but assistive communication technology falls under its jurisdiction as well. I wonder if that's a loophole. In any case, individuals are eligible to receive one device every five years, barring any change in their disability.
I don't know how many programs are like this around the country. I'll do a little research on it and post a blog entry.
STAP Consumers Frequently Asked Questions
ReplyDeleteWay cool ~ everything is better in pink! I just finished reading Schuyler's Monster for an AT graduate course I'm taking at SCSU, which led me to this blog. I'm a special educator at a public middle school where I really advocate to incorporate technology, adaptive technology, and digital literacy into the daily lives of all of our students. I'm glad I found your blog, it's like an extension to your book... a good read :). It's so insightful to see how parents experience the special education process. I look forward to reading more...
ReplyDeleteAwesome! So, what will happen to the current BBoW? Will you be able to pass it on to another child in need (after a suitable adjustment time to the new device)?
ReplyDeleteTexas, Ya done good this time.
ReplyDeleteCan't wait to see what your wonderful girl can do with the new pink box.
I wish you guys the best...
ReplyDeleteNow just send it off to get bedazzeled with rhinestones and Schuyler will be more of a rockstar than she already is.
ReplyDelete