I Am Olivia

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For eight years we have worked very hard at translating Olivia’s non-verbal queues (a smile might mean a “yes” or “I’m happy”). Sometimes we got it right, other times we didn’t; leaving both of us tired and frustrated. Temper fits and meltdowns were a common occurrence for Olivia; could you really blame her? My heart broke when I “guessed” wrong (because let’s be honest, it was just that…a best guess), and I would feel as if I failed her. But then a beautiful thing happened, we learned eye gaze communication.

When Olivia was two years old, I began to notice that she would look towards specific objects or people when she understood the name or word spoken. I began to ask her, “Olivia can you show Mommy where the clock is?” or “Where is Daddy?” She would then shift her eye gaze towards our clock hung on the wall or her father sitting in the chair. I proceeded to ask her about other things and when she showed me correctly, I would clap and celebrate her accomplishment. Finally we were building a bridge of communication and it was wonderful!

Olivia advanced her communication skills to low tech devices like eye gaze boards and then eventually onto partner assisted scanning using PODD (Pragmatic Organisation Dynamic Display), an example of augmentative communication using a book or device that displays a series of symbols and words. A great example of how to correctly model PODD is shown by Karen Owens of We Speak PODD. 

PODD was a great stepping stone for communication technology. Olivia was able to improve her ability of controlling her eye gaze, a difficult task that can be quite fatiguing, but necessary when utilising devices like the Tobii Dynavox Eye Mobil Plus. It is here where Olivia has really begun to expand her desire and ability to communicate. She is truly finding her voice for the first time!

Today we use a combination of low tech and high tech communication. I like to think of it as an adapted version of how we all communicate on a day-to-day basis. We each tend to use our bodies to convey messages we want others to receive. For Olivia, her body language is her facial expressions combined with her communication software and device, her voice. It has been such an amazing transformation to watch her grow both in mind and spirit. She is a much happier child and her relationships with both of her siblings has grown so much stronger. She enjoys razzing them both when the opportunity presents itself (youngest sibling = kinda her job…lol) and I never stop getting tired of her “Hi Mom. I love you” messages. I have waited eight years to hear those words and each time they still bring a tear to my eye.

“I am Olivia.”
It makes me so proud when she chooses to use this sentence because it is a profound three word statement that is more than just a statement of her name, it is the building blocks of individual advocacy and the opportunity to personalize her individual abilities. . The sky is the limit and we have just embarked upon the cusp of the horizon. Look out world, my baby has found her voice and she ain’t afraid to use it!

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Communicating At A Glance

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In previous blogs I have talked about my daughter being nonverbal and how being nonverbal doesn’t always mean unable to communicate.

Communication can be accomplished in many different ways,  such as through body language, verbal language, sign language, eye gaze interpretation, switch activated devices that “speak” for an individual, and this is just to name a few.

When our daughter Olivia was diagnosed with Cerebral Palsy and we had learned how muscle control and cognitive function can be affected as a result of this condition;  we were eager to assist in her development of the abilities she could strengthen. The first step was to understand how Olivia communicated.

We didn’t know if verbal language would ever develop, but what we did know was how alert and focused Olivia was within her environment. We quickly discovered her ability to control her eye gaze. She could track objects easily and appeared to pause on objects she was most interested in. Olivia’s speech/language therapist and occupational therapist suggested we build communication from this.

We began by giving Olivia the opportunity to choose between a “preferred item” and a “non-preferred item”. For example, her therapist presented her with a piece of tissue and a bright red ball. This exercise was to determine if Olivia understood her ability to choose something she really wanted, by looking at the object she favored most. It didn’t take long for her to pick that bright red ball over a measly piece of tissue. This was a profound moment! We learned that not only did Olivia completely understand the instruction of the exercise, she could also make choices!

Olivia has been practicing Eye Gaze communication for the last three years. Because she communicates so often using eye gaze, Olivia’s facial expressions have become more animated and bright. She will often smile for a “yes” answer or become expressionless for a “no”. We have learned to focus clearly on her eyes when we interact with her; building upon our ability to interpret what she is trying to tell us.

If Olivia has taught us anything it is this, open your eyes to the world around and you will hear what I’m trying to say.

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