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Summer 2007 Table of Contents
Versión Español de este artículo (Spanish Version)

Tania Khan: A World of Deafblindness

By Sara Khan, Sibling, age 10, Grade 4

Abstract: Many within the deafblindness community in Texas have had the pleasure of hearing Fareed and Rubina Khan at events such as the Texas Symposium on Deafblindness, describing their personal experiences with their daughter Tania. Now Tanias sister Sara shares her perspective of growing up with a sibling who is deafblind.

Keywords: Family wisdom, deafblind, sibling perspective, disability awareness

On October 16, 1993 my sister, Tania Fareed Khan was born. She was premature, meaning that she was born four months early. Being born at six months and weighing less than two pounds, her body was not ready for this world. She spent her first eleven months in hospital. Thats where the story begins... Imagine that!

Text Box: Tania had many surgeries during the first few months of her life. She was always very sick and needed a lot of medications that damaged her hearing. No! She was not born deaf. No! She was not born blind, and No! It was not anyones fault. Tanias eyes did not have a chance to develop properly and the oxygen that she needed to survive damaged her eyes further.

When my sister left the hospital, she could not see nor hear. Tania was not able to eat or drink with her mouth. She used a G-button. A G-button is a tube that connects to your stomach. Food is sent to your stomach through this tube. She needed a G-button for quite a few years. When she no longer needed it, she had surgery to remove the G-button and close her abdomen.

Tania did not walk till she was about three years old and needed someones support to move about. Often people did not understand that she was deafblind. They thought that she was mentally retarded, which she was not. People thought this because she did not act as you and I would. She acted normal for herself. Normal for her is not what we call normal.

She started school when she was three. It took a long time for her teachers to understand her and her ways of doing things. The teachers, my family, and I were learning sign language. Before sign language, Tania had no other language or way to communicate. It was like guess and check without the check!

She could not talk because she was deaf. We learn by hearing people speak but she cannot hear, therefore she depends on us to teach her. Also, because she is blind we have to sign under her hands. This is called tactile and coactive signing. Being deafblind, she can learn only what we teach her and what we show her with her hands. Her hands have to be her eyes and her ears and we have to bring the world to her hands.

When she was five, Andi, her intervener or caretaker, came to work with her. She was and still is great with Tania. She does nearly everything with my sister and acts as her eyes and ears. Andi has been with us for nearly eight years. Wow! We all hope that Andi will stick with us for however long we need her. That may be a while.

My sister had therapists for nearly everything. There were therapists for teaching her to walk, speak, dress, eat, sign etc. We hope that Tania will one day speak but then and even now we focus on sign language. If she never learns to speak then sign language would be her only language or way of communication. Think about not being able to communicate. Wouldnt that be horrible?

Tania Khan is an amazing friend, sister, and daughter. Though she is not Helen Keller, she is just as smart and fun. Nobody can really describe her world. At the time that she was in hospital, the doctor had told my dad that she was not going to make it. Look at her now! She is a nice, smart, and beautiful thirteen-year-old girl. That just goes to show you: dont ever let anyone tell you that something isnt possible&