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Versión Español de este artículo (Spanish Version)
By Melanie Knapp, Christian’s Mom, Sugar Land, Texas
Abstract: One mother shares her reflections on her son’s dramatic improvement in quality of life through the work of his intervener, and how her son, “the great motivator”, inspired her to help others reap the same benefits.
Key Words: Family, deafblind, intervener, personal experiences, losing a loved one, family support group, Christian’s Vision
In celebration of Helen Keller’s birthday, June 25 – July 1 was Deafblind Awareness Week. Helen Keller was born on June 27, 1880. At the young age of 19 months, Helen came down with an illness that left her deaf and blind. When Helen was a young girl, Anne Sullivan, a teacher and former student of the Perkins Institute for the Blind, became Helen’s teacher.
Today, we might call Anne Sullivan an intervener. “An intervener acts as the eyes and ears of the individual who is deafblind, making him or her aware of what is occurring and attaching language and meaning to all experiences. An intervener intercedes between the individual who is deafblind and the environment in such a way so as to minimize the affects of multisensory deprivation and to empower the individual to have control over his or her life” (Henderson & Killoran, 1995). Over the past few years, there has been national and statewide activity to define and standardize the role of an intervener working with deafblind students in our schools.
My husband and I were very fortunate to have had an intervener work with our deafblind son, Christian. Christian and his intervener, Ann, were together 3 years in Fort Bend ISD. Ann helped Christian out of his dark and silent world in the short time they were together. They became “models” for deafblindness and the power of the intervener.
We referred to our son as “The Great Motivator”. Throughout his life, he motivated his Dad and me to make things right for him. Christian passed away November 3, 2005.
In his memory, we are establishing a grassroots organization to support families who have been touched by deafblindness. We have a vision that all deafblind persons will have a skilled intervener working with them. To learn more about Christian’s Vision, please contact me at (281) 438-6589 or <firstname.lastname@example.org>. I have written a story, “Christian and His Intervener”. Following is an excerpt from it. If you wish to read the story in its entirety, it can be found on the web at the Project Sparkle site, <http://www.sparkle.usu.edu/christian.html>.
Christian was 21 years old when he and Ann met. In Texas, Christian was allowed to attend school until he was 22 years old. Ann would have one year with Christian. We were unbelievably excited, yet cautiously optimistic. Ann admitted that Christian was the oldest deafblind child she had worked with. She had ten years of experience working in our area as an intervener. Her experience, her reputation, and her love for what she did were all evident when she became Christian’s intervener.
Gary and I knew we had been given a “gift” of Ann. We were determined that Ann would have every tool she needed to help Christian.
Ann started a log that she wrote in every day to let us know what Christian’s day had been like. Gary and I would write back with what he had done at home. These logs became such an important piece of Christian’s progress. We spoke on the phone often. I came up to school often. I felt welcome there. Christian was in a transitional classroom. A lot of the kids had jobs to go to. His classroom teacher was very supportive of Ann and Christian. She encouraged Ann to “do her thing”, and was there when Ann needed her. Christian began developing relationships with some of the other students. Ann taught them to approach Christian’s hands to say hello. As time went on, Christian’s friends were given sign names and symbols. Christian eventually was able to recognize them with only their sign name.
Ann, Gary, and I communicated on a daily basis. We either wrote each other in the log, spoke by phone, or in person at school. Early on, Christian and Ann spent a lot of time getting to know each other. Ann and I spoke about his previous few years at school, and how Christian needed to adjust to a busy day. She wrote me on September 27, 2001 after one of our talks. “I looked at some things differently. I am one long activity that has entered Christian’s life.” I laughed when I read that. Christian had “his way” of letting all of us know when he needed a break! On that same day Ann wrote, “Christian walked from the bathroom to his calendar by himself”. That was the first time Christian had ever walked alone. On October 10, 2001 she wrote, “Christian walked 284 steps alone on the tennis courts today”. I was so proud of my boy. Christian was also beginning to understand more signs. Ann wrote that she had signed “bathroom” to him, and he stood up and walked toward the bathroom.
By the end of the fall semester in 2001, Christian had made huge strides. He was loading his calendar box in the mornings and afternoons. He understood his routines and it was apparent that he understood many signs. Christian had begun to sign some words: “vibrator”, “eat”, and “walk”. Four months had gone by and we had only a few more months of school before Christian would graduate.
I asked Ann to share some of her memories of Christian for this story. She wrote:
“I have so many wonderful memories of Christian. A really happy memory that comes to mind involves the first time he signed “mom”. Melanie (his mom) was already in the room, but Christian didn’t know she was there. Melanie and I both looked at each other and I know we were thinking…it was surreal…did Christian really sign “mom”? She had tears in her eyes and I had tears in my eyes too. I know it was a tremendous experience for Melanie to see Christian sign “mom” for the first time. It was for me.”
“It was really good for Christian and for me when he first started walking with other friends. I remember a red-haired girl was one of the first students Christian walked with. They would walk around the gym during P.E. I could tell Christian really liked being with her. It was great for me to see the two of them walking together, and it also gave Christian a break from walking only with me.”
Christian … literally flourished before our very eyes. All of us involved in Christian’s education believed that this was only the beginning for this intelligent young man. No one could deny that fact that Christian was receiving the appropriate program for him as a deafblind person. The proof was right in front of all of us.
Gary and I did not want to face that this school year would end. Everything that we worked so hard to get for Christian would be over. We could not give our son this “life”, and then have it yanked away from him. He proved that he could do this. It was up to us to make sure that he had every opportunity to continue to grow and learn.
We began our investigation of what we needed to do for Christian to stay in school. All we wanted was to make up for his “lost” years at his previous high school and for him to stay at Dulles and have Ann continue to work with him. Sadly, we were told that Christian “ages out”. He would not be allowed to continue after the school year ended. I could not hold my tears back as we sat in his ARD. I knew these professionals. I knew that these people that sat in the room on that day felt the same way that Gary and I did. They had seen the “miracle”. Their hands were tied. We were heartbroken… but not defeated.
Gary and I had a long talk. We didn’t have a lot of money, but we knew that our next step was the right one for Christian. We hired an attorney. We knew that our only way of getting through to the district was to file a lawsuit. This is not what we wanted to do, but Christian needed us to.
Our case never went to court. The Director of Special Education in our school district called Gary, herself. Our case had been reviewed and Christian would receive two more years of education. Within a few weeks, we again sat in an ARD meeting. We would stay at Dulles, Ann would be his intervener, and the “miracle” would continue to unfold.
The next two years went by too quickly. Christian and Ann became a “model” for interveners and deafblindness. Christian thrived with his understanding of tactual sign. Gary and I took sign language classes. Ann, Gary, and I became strong accomplices for Christian. We worked in sync with each other daily. We often spoke about the importance of our relationship and our communication and how much it helped Christian. We knew that what Christian learned at school was critical to include at home as well and vice versa. We worked on building a “bridge” between his school life and home life.
Ann continued to nurture Christian’s friendships at school. Chris was his best friend. He would meet Christian in the morning and walk him into the class. Ann had taught Chris some signs to talk with Christian. Ann shares this memory between the two friends:
“I loved seeing the friendship that developed between Christian and Chris. I could tell that Christian was so comfortable and happy when he was with him. They would walk together to lunch, and they would walk together in the afternoon to wait for Melanie to pick Christian up after school. While waiting for her, Chris would sign “wait for Mom”. I know it made Christian happy that Chris learned to sign and that he learned about Christian’s calendar box. It was good for Christian to feel he was understood and to have Chris as a friend. There was the time that Chris and Christian took off from the classroom. For a moment, I was frightened…because they left without me. I went out into the hallway and saw Christian standing with Chris while talking with a girl he liked and some other kids. It was the best feeling seeing Christian interacting with other friends.”
Ann and Christian had been going out into the community. Christian would shop at the grocery and other stores. He had a few favorite places that he liked to eat….well… eat the chocolate dessert.
We had been supported by the Texas State School for the Blind and Visually Impaired Outreach for years. Craig Axelrod worked closely with Ann and the other team members ensuring that Christian had every tool he needed to learn, including training for Ann, Gary and me. Craig was a friend to us, and to Christian.
I began to look at Christian’s future beyond school with a new outlook. It was inevitable that this time he would graduate. It was extremely important to us to make his transition as smooth as possible. His life was full of meaningful activities, and we wanted this to continue for him.
Christian’s love of chocolate found him a job. Ann had discovered early on that Christian loved chocolate. Their discovery came on Christian’s first trip to the vending machine. He had no idea at the time that “the big box” could spit out this delicious chocolate... at least he didn’t on the first trip. The next time, he knew what was coming. He quickly learned the sign for chocolate. Ann taught Christian that he could put money in the machine and get chocolate. As time went by, we expanded that theory. We bought Christian a small vending machine. We had permission to put it in the classroom. Christian learned to load it with chocolate, and other treats. He traveled to Sam’s Club to buy supplies for his vending machine. He learned to collect the money out of the machine. After graduation in 2004, we had special permission to keep the vending machine at school in the classroom. Christian went to school once a week to load the machine. He was able to visit with his old schoolmates and teachers while he was there. We were working on getting him another vending machine to be placed somewhere else in the community.
The obstacles that we had to overcome for our son Christian were worth every struggle, tear, and frustration. I believe in the Intervener model. Christian’s quality of life improved dramatically because he had an intervener.
What would have happened if Christian had been with an intervener years before?
“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” (Helen Keller)
Editor’s Note: Ann, the intervener mentioned in Melanie’s article, is also described working with another student in Michelle Weth’s article beginning on page 12 in this issue of SEE/HEAR. You will see in that article that she has continued her work as an intervener who makes a difference in the lives of students who are deafblind.
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