"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Friday, November 16, 2012

Stunning News

On the advice of a blog reader, I connected with "Fighting Monsters with Rubber Swords" a few weeks ago. Then, I found the book, Schuyler's Monster: A Father's Journey with His Wordless Daughter at our library, and devoured it.

As read about Schuyler's journey towards communication, I became very excited about a device I had never heard of before called "Hip Talk". The Hip Talk is made to be worn around the waist of a non-verbal person, in a fanny pack type of case, and can easily go wherever the person goes, leaving their hands free for regular activities until they need to push the buttons to communicate a pre-programmed word or short phrase.

This device resonated with us like no other device we have considered for communication before did. Easily portable, leaving Katya's hands free to play, much more affordable than other devices that have been suggested,  and while it didn't provide a complet method of communication, it sounded like a great "first step" device. It seemed like something that could really be "right" for her as she could easily play on the playground and in gym with it, and yet have it handy to communicate with her peers in a basic fashion. Programmable up to 60 different words or phrases, that would bring her to around the same level as she is with ASL signs, only everyone who could hear could understand this.

After some discussion, we dashed off a polite but firm note to the school, alerting them to this device, and asking that it seriously be considered for Katya' communication needs.

Within a few days we had heard from both her speech teacher, and the Director of the Special Ed program, letting us know that this was a device they didn't know anything about but were willing to research.

That was my first shock. We have had sooo much conflict with the school that it was truly shocking to be taken seriously about this.

My second shock was yesterday getting a phone call from the Special Ed Director telling me that they have researched every where and not been able to find a "loaner" "Hip Talk" and that the company has a very strict policy about returns, and they just are not sure if they really should go ahead with it right now, or just wait until after Katya has assessments done the end of this month, and then we can sit down and discuss the results and have a meeting to discuss and decide what to do in terms of communication for her.

My heart sank to my toes, and I began to advocate for Katya. Charity was there and she said that I handled it masterfully. It had to have been God . . . helping me to fight for my little girl, because I was in a store, with all the children except Katya, so I wasn't even in a good spot to really discuss this. With every bit of diplomacy that I could come up with, I went to work running my mouth . . . and by the time the conversation ended, the Special Ed director said she was going to put in a purchase order for Katya's "Hip Talk"!!!

Can you imagine the DOORS this could open for Katya if she is able to physically use it?  It depends on both the flexibility of her arms (due to her dislocated elbows) as well as her ability and willingness to wear it and use it, so we will just have to see, but I have a good feeling about this.

I am so excited . . . I can hardly wait for the "Hip Talk" to arrive at school and for Katya to be introduced to it! Please join us in praying that she will be successful in using this, according to God's will!

We are still in a state of happy shock . . . so many times Katya's needs and our concerns for her have been "back-burnered" or worse . . . and to have actually been listened to and approved for something that is this important to her future is stunning and shocking. I really do think it is in answer to the specific prayers that some of her prayer warriors were putting up!

Next month, my daughter will be EIGHT YEARS OLD. And for almost 8 years, she has lived without a voice . . . without a way to let people know what she wants and needs. The last year she has had a limited ability to communicate with SOME people who know ASL. But she has no way to communicate with the world at large. Do you realize how huge this will be if she can adapt and learn to use this at it's highest level? Do you realize what doors emotionally and educationally this could open for Katya?? Do you realize what an amazing gift it would be to our family if she can begin to communicate more and more fully with a device so that we know what is in her little heart and mind?

Hot burning tears are pouring out of my eyes as I type this. My Mommy heart longs and yearns for my daughter to have the ability to communicate the joys and sorrows that are in her heart . . . Watching Miss Katya's pain and frustration and knowing she wants to communicate but can't has been sooo, sooo hard.

What a blessing that our blog reader suggested Schulyer's Dad's blog to us! Thank you from the bottom of our hearts! You may have opened a much bigger door than you ever dreamed when you suggested it! We are grateful to our blog readers! You really do make a difference in Katya's life and in ours!

And now you too can rejoice with us at our stunning news!! The school is actually buying Katya a communication device!


Natalia said...

I'm crying with you...the best kind of tear, joyful ones :)
i'm so happy for Katya, all the possibilities ahead of her.

Cyndi J said...

Praise God !

Milena said...

I'm so happy for you and for Katya!

Leah said...

I'm crying. And I'm not a person who cries easily. I am so, so glad my suggestion worked out so incredibly well for your family, and I can't wait to see what doors this will open for Katya! After eight years, I'm sure she has a lot to say! :)

Hope Anne said...

Leah, yes, thank you so very, very much! Things like this are one reason that I think it's important to keep blogging Katya's story . . . her case is so unusual that there is not a specific support group to get info from for a situation like hers. So reading that book was extremely helpful on so many levels and I could relate to so much of it. Then, we got the info on the Hip Talk which was the first thing that has really "resonated" with me as being right for Katya's situation right now. Praying that it's "as right" in real life as it seemed it would be!