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Julia and Me - an Intro and Some Questions

Hello there. My name is Sarah-Beth and I'm new. I have a fairly long backstory and a couple of questions.

I'm twenty years old and a college student. I have a variety of physical and emotional/mental disorders, including Asperger's syndrome, schizoaffective disorder, and congential adrenal hyperplasia.

For three years now I have worked for a non-profit organization that serves blind and visually impaired children and youths and their families. For those three years I have been privileged to work with a young lady named Julia.

Julia is eighteen years old. She is completely blind and is mentally retarded. She also has cerebral-palsy-like features. She was born without these disabilities and then contracted an infection with a very high fever that left her blind and handicapped. Julia is nonverbal and mostly nonmobile. Her movements are mostly with her right hand; it is harder for her to use her left hand. Her family is trying to have her classified as deaf-blind because she also has a processing disorder that makes it difficult for her to react to commands; she becomes easily frustrated if more than one command or request is given at a time.

But she is an amazing, beautiful, funny, smart person. I like to think of her as my "little sister." She absolutely adores music and has a great sense of rhythm. She experiments with drums, the piano, and anything else she can get her hands on. She participates in musical programs with disabled and non-disabled children, and has performed at a local opera house with a children's music group. Through our work at the non-profit, she has successfully participated in two nine-day camping sessions and one weekend session. This year she is scheduled to be with us for more than 14 days!

While she is with us, I am her full-time one-on-one aide. I am responsible for dressing, toileting, moving, positioning, transferring, and cutting up food. Julia feeds herself with her right hand. I also push her wheelchair, give her her daily medications, and support her when we're in the pool.

Throughout the time that I have worked with Julia, I have seen her vocabulary grow. The first year we had her, she did not use any spoken words with us. The second year she used "eat" and "yes" infrequently. Otherwise, she communicates through the pushing and pulling of her partner's hands, gesturing, and making noises with her mouth.

Her parents have purchased her an augmentative communication device. It says "yes" and "no"... or, really, any two different messages. Julia has had little to no training with the device, and neither has anyone around her.

I know it is in her potential to be able to communicate "yes" and "no." Her family is not too particular about whether she uses the communication box or manual hand signals or a combination of the two to say "yes" and "no." I'd also like her to be able to communicate "eat" and "toilet."

So here are my questions -

- What is an easy manual communication set to use with Julia? I am training to be an interpreter for the deaf, and so I am familiar with American Sign Language and its manual alphabet. I have done research on other forms of sign, notably methods for deaf-blind sign, but I don't really know anything about them.

- What is a simple, low-stress way to teach Julia to use the communication box?

- How can I encourage Julia to communicate through the com. box and/or manual hand signs, specifically with the other blind kids at our center?

- What are toys/small manipulatives/rewards that would encourage Julia to communicate? She is not really motivated by food, because she doesn't like to eat unless it is meal-time, so we usually try to respect that.

Any other suggestions or ideas would be greatly appreciated.

This is my beautiful girl, playing the piano with her right hand -


( 4 comments — Leave a comment )
Jun. 30th, 2008 12:11 pm (UTC)
Hi, I'm Susana.

I have CP/DID, and know about communication too. I use ASL and French when family doesn't understand English. Have you looked into DynaVox? It is a small keyboard that she can type words into and the computer-like device will translate that into speech. I have a non verbal friend that uses one. Call me blessed for knowing her and her mom well. :)

I hope that helps. Typically, I think insurance will cover the device, but you may want to check into that too. All the best as you move forward on your journey with Julia! She's a beautiful young lady....stay inspired, and I hope I can be of help too.
Jul. 1st, 2008 01:38 am (UTC)
Re: Julia
I have looked into DynaVox, but the problem with that is Julia is blind, she has limited motor capabilities, and she does not read or comprehend written language, even Braille.

I think our best bet is this two-sided com. box and a combination of created or ASL signs.
Jun. 30th, 2008 02:36 pm (UTC)
She's a lovely girl. My daughter used to have communication problems, but she just has Pervasive Developmental Disorder. What always worked for Elaine was really positive feedback. When she uses the box correctly, act silly, clap, shout, get excited. Hug her if she likes that. Or try to make it a game with her, if she does it correctly, give her something like a sticker, if she likes that sort of thing. It's probably going to be a long patient process, but you sound like a wonderful, wonderful person, and I have every confidence that you can teach her to do it.

Another suggestions is when Julia says "yes" or "no," show her the button to push on the device. Eventually she'll associate the yes or no with the buttons on the device.

Welcome to the group. You are a hero and role model in my book. You have overcome or compensated for your disabilities and are helping others less fortunate. The world needs more people like you:)
Jul. 1st, 2008 01:36 am (UTC)
Thank you so much for all of your suggestions, and thanks for the welcome to the group.

I am really hoping to help Julia make some headway in communication... I love her to bits and I'm so glad I get to work with her.

And I don't much think of myself as a hero or a role model... just somebody who "did the impossible" and beat what was considered an unbeatable series of physical and mental trials, and realized she could help others. But thanks. :)
( 4 comments — Leave a comment )


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