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Keith’s Story

Keith, at almost 10, had been trached since he was six weeks old. Because he had difficulty voicing around the trach, when he was about a year old, I decided to begin signing with him. Because I believed at that time that he had hearing but couldn’t voice, I only was learning and using nouns, adjectives and verbs – children picture book language. His first signs were ‘more’, ‘please’ and ‘read book’. By the time he was two he was using about twenty signs, and when he was three he had a vocabulary of over 300 signs, often stringing several words together to shape a concept. Since he was learning the signs so nicely, we were becoming quite detailed in our list of fragments to describe things.

When Keith was three his hearing was routinely tested for placement in special education preschool we found that he is profoundly hard of hearing, with a 90-120 dB loss. At that time, the infant assessment team had targeted Keith for the orthopedically handicapped classroom, as he had a trach, a gastrostomy, was not independently walking and had balance issues. I had contacted the deaf and hard of hearing (DHH) teacher because I was eager to place Keith in her class even before I knew he was deaf, because signing was his mode of expression. When the DHH teacher called me back, I had already absorbed the fact that Keith was deaf; she however had not heard the news yet. Our conversation was awkward, but revealing. She began by politely outlining for me all the reasons non-deaf children use sign. She praised the IEP presentation I had prepared for Keith and was impressed by his vocabulary and my documentation of it. She began to explain how being deaf is different than being hearing and utilizing sign when I interrupted her and said “But Keith is deaf. He has a profound hearing loss!” It seems odd to say but she was very excited about this, mostly because she is a wonderful teacher and exceptional at reinforcing language. Now she was attached to Keith and to his agenda – that he needed a complete language.

There was something in the beginning of the conversation we had, before she realized Keith was deaf, and she was talking about language and vocabulary that the green light went on in my head. I had given Keith a vocabulary, but not a language. I hadn’t really thought about that difference yet. I frantically began to fill in all the blanks in my signing, trying to create whole sentences, sign all the words in a storybook, and even sign all I said to anyone. Since I was quite determined about this, it really limited my conversation for a while. I was frustrated by my limited progress, and how awkward at times it was to learn the signs from a book and use them with any conviction.

Keith started special day preschool in the orthopedically handicapped class with a full time sign language interpreter, who was a deaf education student from CSUN (California State University – Northridge). When I saw her comfortably and fluently sign a complete language, I knew this is what we needed, and I invited her to come work in our home, and just sign sign sign. She came three days a week. She signed storybooks. She sat in front of the television and signed videos. She signed when she talked to me and she patiently answered all the questions I had from literally “how do I sign this..” to questions about deafness and its culture. I put ads up at Moorpark College and CSUN, and found two more college signers to come into the home the other days. Our entire family social life was based on these wonderful students and at dinnertime our table was always full of hungry students signing signing signing. I wanted not only the direct language presented to Keith, but the richness of the passive receptive language that hearing children naturally benefit from by simply being in the room when adults are speaking. I wanted to bring Keith’s language to that place of fluency that deaf children of deaf parents demonstrate.

It really took about 4 years for Keith to start signing language back. At five he was indicating his preference for certain nicknames – like any three year old might do, and at six he would dictate simple repetitive stories. At seven he began to be able to read, spell and speak intelligibly, and that’s when the whole thing took off. He went from simply always doing his best, to doing his best and doing fantastically. When Keith had just turned nine, he attended Space Camp in Alabama, and won the “Right Stuff” Award, ran for Vice President of Student Council for the entire Elementary School where his DHH class is located and won, and has been on the honor roll every quarter since letter grades have been given. As much as language has been the key to his emotional independence and “coming into his own” he also seems to love language, playing with it, using it and reading it.

With language, not only could we now know our child intimately, but he could freely unleash himself upon the world with joy. It’s not so much that Keith is “all caught up,” because he isn’t, but now his progress is no longer bittersweet and we no longer compare him to the “normal” life he would never have. He has complete ownership of his own person, just like anyone else. He has his own strengths and weaknesses just like anyone else. He has become completely equal and stands on his own without qualification or explanation.