Vantage Lite vs. Springboard Lite and all our pictures/videos!

Since getting the Vantage Lite, I've really been torn over the decision on which device to commit.  I know it may have seemed like it was an easy decision.  But, I forgot that the deciding factor a couple of years ago when we were trying to figure out which one to buy - was that the Vantage Lite sounds like a computer talking and the Springboard Lite sounds like a little kid talking.

Keep in mind that at the time we were making the decision over which device to purchase, her second jaw reconstruction surgery was scheduled (December of 2009).  And we were hopeful that it would be successful and that decannulation would happen in the next year or two.  That would allow her to learn to speak more clearly and maybe, with any luck, she would be more verbal by the time she outgrew the Springboard Lite.

The Springboard Lite is smaller and weighs less (2 lbs. 8 oz.) vs. the Vantage Lite (3 lbs. 6 oz.).  We wanted her to be able to carry it around herself.  And she was so tiny two years ago!

But, ultimately, when it came down to it, we did not like the computer speak at all.  And the voice of the device was going to be her voice - so it should sound more like what she would sound like - at least more like a kid.  Plus, the kid's voice was way more clear, whereas the computer speak sounds muffled.  Which makes me wonder if she can hear/understand it herself with her hearing impairment.  

And now, almost two years later, we're back to making the same decision again.  Except this time I know her jaw surgery was not successful and there's no telling what the future holds as far as that goes.  Certainly the possibility of a future decannulation should not be a factor.  I need to think long term use here (as sad as that makes me).

And with that said - the Vantage Lite is definitely the way to go.  Just the other day, we were in the car on our way to the pool and she typed - I am go swimming.  Which, had there been an option for "going" we would teach her that.  But, it isn't.  And in just a few short weeks of intensive speech therapy, she's outgrown the Springboard Lite as far as proper language development goes.

However, nothing is ever easy.  And I can't believe how attached we've become to her little purple Springboard Lite and the cute little kid voice that's in there (and Murphy's voice, too, since he recorded a lot of the words).  I can't help but associate those voices with Harlie.  They were - are - Harlie's voice and have been for almost two years.  And I'm sad.  I don't want those voices to go away.  I don't want to lose those voices to unemotional computer speak!!!!   And I don't want unemotional computer speak to be Harlie's voice!!!

UGH!

And to make matters worse - today in speech therapy while working on the Vantage Lite, Harlie asked for her purple device (signed "purple").  Oh, how heartbreaking.  And as hard as it was, her ST kept her focused on the Vantage and it didn't take very long for her to learn how to tell her ST that she wanted to play with the barn and horse.

I wish I didn't have to make choices like this.  Ultimately it comes down to a terrible voice for Harlie or giving her a device that will grow with her brain.  Because as one of our ST's said, we will ultimately be giving Harlie another handicap by limiting what we teach her (or something like that).

And I know that I should thank my lucky stars that Harlie can have a voice at all.  And I am.   I truly am so thankful for all that she can do.  And how flexible she has been with having to learn so many different ways to communicate (sign language, PECS, Go Talk, verbal, Springboard Lite and now the Vantage Lite).  But we can't always control how we feel.  And I feel sad that her voice is going to have to change.  As has her face.  Twice.

But I have to do what's best for her - and not base my decisions on how I feel.  Oh, how hard that is!!!  And it makes me mad that so many moms can make decisions on how they feel and it not be detrimental to their children.  Whereas if I were to do that with Harlie, it would certainly have negative consequences on her and her development.

But, Harlie deserves the very best I can give her.  Ultimately, I think it will be harder for me to get over the loss of that voice, than her.  And that's the way it should be.

To add to the emotional downs of the day...

The past few weeks have had me holding my breath.  About a month or so ago, we got an external hard drive or storage thingy for our computer.  My Mac was full as far as photo/video storage went.  So, Tom bought this thing and put all of our photos/videos on it.  ALL of our memories.

And then one night when I was blogging, I hooked the device in and my computer didn't see it.  After Tom trying all he could, he sent it to a company to try to recover the data.  ALL of our memories.  I've been holding my breath, hoping that they would recover it - because the thought of losing all of our memories is honestly, too much to bear.  Seriously, I don't know how I'd deal.

Today we got a message from the company that basically said they could not recover the data because there seems to be some physical anomaly or something with the drive.  So, they need to send it to another company who specializes in that and maybe they can retrieve the data.  The cost will increase dramatically.  Not that it matters, really, when it comes to your priceless memories, the last 10 years of our life.

So, I'll remain holding my breath, hoping and praying that they can save our memories.  Sometimes, I don't know how I get through the day.

Hopefully, I'll have a better post for you next time.  Thanks for reading!
~Christy

Communication Device Update

Wow.  Blogging really pays!  As it turns out an awesome person (who I haven't met yet) read this blog post about my wanting a Vantage Lite for Harlie.

And HOLY COW I now have a Vantage Lite in my house!!!  How crazy is that?  I can't wait till next week, when I get to talk to our therapists about it!  They are going to be so excited!!!

As it turns out, our county has a few for students to use.  And this person knew that and got her hands on one for us!  I just can't believe it.  Seriously.  We are so, so lucky!!!  Thank you so much, Ms. R.!!!!

And speech therapy for the device is going great!  Harlie is really making some fast progress.  Here are some examples:

I told her the other day that it was time to eat.  She went and got her device and said, "Mommy, I want to cry."  That funny little girl!  No, she doesn't particularly enjoy eating orally (sometimes she down right HATES it) but, in this instance, she was being funny.  Like a sense of humor, funny.  And she knew it.  I pressed the button for laugh (like, I want to laugh) and then she touched the button for cry.  This went back and forth a few times and we were both laughing the whole time.  And then she ate her meal.  Life is good!

Last weekend I took her with me to run some errands.  We went to Target first.  Partly because it had been about 2 weeks since I was there last and I needed to see the store.  You know, just needed to see it?  But I also needed a few things.  Not wanted.  Needed.  While there, Harlie dropped a toy she was holding that she brought from home (a Lego DOG - ahem - attached to a leash that Murphy made).  I grabbed her device and added a button for "dropped" under the Verbs menu.  I then showed her where it was and how to put it in a sentence - "Mommy, I dropped my dog."  Then I had her clear it and put the sentence together herself.  Which she did, with no problem.  Then I picked up the dog and she was happy and we continued shopping.

Then we went to the ABC Store (liquor store for those of you outside Virginia).  A much needed stop, as you can imagine.  hehe

After that, we went to the grocery store.  Then, we got back in the car again - and finally worked our way home.  On the way, while in the car, Harlie dropped her dog.  Instead of yelling and pointing and making me turn around (while driving - SO stressful!) to try to figure out what she was trying to tell me - she immediately grabbed her device and said, "Mommy, I dropped my dog."

Isn't that AMAZING?!  I showed her ONE time!  And since I knew what she wanted to tell me, I could acknowledge it (said oh no, you dropped your dog? I'm so sorry, but I'm driving and can't get it for you.) - and she knew I knew and so she was fine.  How awesome is that???  For real!

Another thing - during speech therapy the other day, Amy wanted Harlie to be able to say "that's funny!"  So, she asked me if it was on there already and I said I didn't think so.  She looked under the Social menu, and it wasn't there.  We thought that would be a good place for it, so she added it.  Then she showed Harlie.  She cleared it and wanted Harlie to say it by herself.  Harlie then built her sentence and used a different "funny" button.  It was my voice.  And then I realized that I had added that button forever ago - under Feelings.  And Harlie knew that.  FOREVER ago!  And she showed Amy that it was already there.  Crazy.

The only negative to the device is that it is slow - meaning slower than her thinking.  And to teach her something on it - takes stopping the moment, and fiddling with the device.  And in speech therapy it is a challenge to keep up with her.  While her ST is trying to add something to the device to teach her how to say something, Harlie moves on to something else.  Harlie isn't patient and doesn't want to wait.

And I need to video how fast Harlie's fingers go on that thing.  She could compete with a teenage texter! This is only after a couple of weeks!  I can't imagine what she'll be like in a few months!

And she's using it in summer school, too.  So, things are going great.  Nothing is better than verbal communication - but when that's not an option - I am so, so thankful they make this device.  It is a true life changer!!!  I can't wait to see what else she's going to say!

Thanks!
~Christy

Speech Therapy and her communication device

After our hearing appointment last week, we met a new speech therapist.  This is something I haven't been able to blog about.  So, to bring you up to speed, here's the low-down:

Since she's starting Kindergarten in the fall, I think it's imperative that she be able to communicate with her peers.  And they don't know sign language.  And, at home, it is getting increasingly frustrating - for all parties - to not know what she wants or needs all the time.  She is almost five years old (crazy!) and she has a lot of information in her head that she just can't get out.  

We were receiving one hour of speech therapy per week.  And because of the body cast and surgery, etc. it's been a while since that was consistent.  

So, I decided that I wanted her to get WAY more therapy - and I wanted it to focus on her communication device.  There is a physical therapy place (Hope Therapy) here that offers an "intensive physical therapy" program, where the patient goes every day for several weeks.  That got me thinking about doing the same thing (to a lesser degree, of course) with speech therapy.  So, I started calling some speech therapists to see if they had an interest in doing an intensive program with Harlie - focusing on her device - at least three times per week.  

Because of insurance red tape - this would never be approved.  So, because of the many wonderful, generous donators to The Harlie Fund (including the awesome Harlie Crew!!!) we have some money to pay for this service privately.  That will get us a lot more therapy - and a lot more freedom to do what we need to do to get her "talking" and having conversations with her device.  

I cannot tell you how incredibly excited I am about this!  And I cannot begin to tell you how thankful I am that we have been so blessed with people who care about Harlie enough to be generous with their hard-earned money!  Thank you so much for making this possible!  Just think - YOU are helping her TALK!!!  What an amazing gift!!!!  Words simply cannot express what this means to us!

And, as if that isn't great enough, we got super lucky and were able to hire Harlie's first speech therapist ever - Beth!  Woohoo!!!  We are so excited about having her back in our lives again!  

Beth called another speech therapist, Amy, and asked her if they could partner with this project.  Three sessions per week is a tall order for any therapist.  So, if they do it in a partnership, we are more likely to get all sessions in each week.  

And last week was our first week.  Harlie is SO ready to talk!  You show her where a word is on the device one time and she's got it forever.  I knew this already.  We've been using the device a lot more the last few months.  And she tries to build sentences completely on her own.  

Unfortunately, the larger device (which holds more words and has more options as far as past tense and ing words, etc.) would better suit her needs.  But we have to make this smaller one work for now.  This means a lot more programming time on the device.  So, just in case, if anyone knows of a Vantage Lite that someone is done using, please let me know.  As you can see, they are quite expensive and I don't think we qualify to get a new device for another three years, at least.

Last night I felt the difference between the two devices.  Cooper took a toy away from Harlie and she was upset and crying.  I knew she was playing with that toy earlier, and when I heard her crying, I saw Cooper had the toy, so I figured out what happened.  But, that's not always the case.  So, I wanted to show her how to tell me - using the device - that "Cooper took my toy."  But, there is no took.  Just take.  Which is clearly different.

It is amazing how much we learn about language development without even trying.  And when natural learning can't occur - how incredibly difficult it is to teach.  It is truly overwhelming.  But, luckily, she likes her device and is a willing participant.  So, I have high hopes!!

Thank you again to The Harlie Crew and all the generous contributors to The Harlie Fund for making this possible!
~Christy