If you’ve been keeping up here, you know that recently we (my family and I) found out about an App for iPad users to speak for them. To get up to speed check out this post and come back… I’ll wait here…
Now that your up to speed, and you realize that it’s been 15 years, yes HALF of my sisters life has been silenced by her muscle disorder. Dystonia.
The 4 of us piled into the van (it’s an hour away to our destination). It’s a Cat family adventure. We’ve taken MANY of these adventures, they are Frances adventures, for almost 6 years we searched for what was wrong with her, and after finding out the one word ‘Dystonia’ we then searched for a cure… there is none, but that didn’t stop us from our adventures. We went on to search for more knowledge of it, how to adapt to it, how to work with it, and how to make it better.
For YEARS, we insisted Frances would talk again. We knew she would. Our brains just wouldn’t let us think she wouldn’t. We tried Botox injections in her neck… not with a hard needle, but a soft bendy needle that she needed to have put in about 5-7 different injections around her neck. It was so painful she would squeeze my hand, I quickly learned to take off any rings. (after she squeezed my wedding ring right into my finger)
After a year of Botox injection, she was clear for DBS (Deep Brain Surgery) surgery, now years after the surgery, Frances is better with her Dystonia. Better as in she’s not twisted, bent over and contorted to the left at all times. But her ability to eat and drink is extremely difficult. Do me a favor… next time you try to eat or drink… don’t shut your mouth… you have to tilt your head, take miniature bites, and sips, and hope not to choke… that is how Frances eats and drinks.
And her speech is silenced.
Again, until today.
We walked into the Apple store. None of us owning anything newer then a iPod with a wheel on the front. Touch screens, and sliding screens, teaching my parents what an ‘App’ is (I’ve got a cell phone from Wal-Mart's pay monthly company) so it was ALL new to us.
As we all touched, and poked at these new machines, we laughed about how cool we were with our Apple II E WAY back in the day, and besides my iPod that is 4 years old, these are the ONLY two things we know about Apple.
We were greeted at the door by Megan. She was amazing. HOURS with us. Going over the Proloquo2Go app (they had one uploaded at the store. So we really got to see what this app was about) Megan has a cousin with Autism, so this was perfect. She knew this app well, and knew a site that had many other apps that talked for you, some under or around $5.00 too.
You could see that she knew how much this all meant to us.
It was between an iPod, or the iPhone… we were almost SURE we would pick the iPhone for Frances, it’s smaller, easier to carry… but she gave us a look and said no. And iPad is what she wanted. Bigger screen, easier to touch, and bonus the screen is so big our parents don’t need their reading glasses to read what Frances has typed (if she’s not going to have the iPad read it out loud)
I was SO excited for her, and I mean PUULLEEASSE, you KNOW I’d love to have an iPad myself, I tried to say I needed one too, just to help her learn to use it… that fell quickly on deaf ears.
So I did what I do best. Talked, and tried to take the iPad from my sister to show her what little I knew about it the app that I had googled online.
She promptly took it back. Gave me the finger. And quickly found the ‘Please be quiet’ button on the Proloquo2Go App… sigh. Well I wanted her to communicate so that is what I get!!
After hearing Frances talk through the app I looked at my mom with tears running down my face. She too was crying, and my dad was smiling. My sister had a grin from ear to ear, and that was when Megan and a manager started to hug us. They realized that this was not just a new toy for someone. It was changing a life.
It didn’t take long for us to quickly decide that this was it for Frances!
An iPad, Proloquo2Go App, a book like case to cover it.
I have to say we were amused at how fast it was to buy at the Apple store! You don’t go to a register, Megan had a small phone like device, slid the credit card right there, and my mom signed with her finger!
It doesn’t take much to entertain us, and this store, from it’s layout, to the devices in hand, the amounts of people pouring in to be helped and the HUGE amount of people working. It was a whole new world for us. And we were falling in love fast! (I was for sure!)
Now we, as in my parents and I. We’ve waited SO long to hear again what Frances was thinking. Blue has also never heard Frances. But we all probably agree the two people we want her to talk to… more than anyone… is Buzz and Tink.
Tink has already spent 5 years not hearing what Frances has to say, and Buzz 3.
It’s been hard for her to communicate with my kids. They can not read so her written, or typed out words were useless to my two, and with little and or no communication between them, their relationship was not what we all had wanted. Tink and Buzz love their Aunt, and talk of her often, they ask why she doesn’t talk, and I’ve explained. They accept her for who she is. And I’m hoping that they don’t remember the times when they couldn’t communicate with her.
So after a LONG day on our adventure, we come home, Tink and Buzz went crazy with questions to Frances. All we could do was smile and enjoy the conversation…
It was a huge day in our family history. I’m hoping to be interrupted, and told what my sister really thinks. I mean just think. ALL these years I’ve been the one doing all the talking. Jeez, I’m tired already. It’s time for Frances to have a voice.
Today was a day that we all know didn’t fix Frances’s voice, but what it did do is set her free.