April 21, 2007
Name: Kathy Navrkal
Family Members: Mother- Shelly, Father- Randy, Children- Samantha(16), Cristin(11), and Brooklynne (9)
Community: Dakota City, Nebraska
Child with Disability: Samantha- age 16 years, 11 months; Bilateral severe hearing loss
Number of Contacts made: Three contacts were made in person and one contact was made via e-mail.
Name of person interviewed: Shelly
Family History of Special Needs: The family began their involvement with special services when Samantha was only nine months old. Samantha was taken to the hospital because her parents had suspected that something was wrong with her and they were told by the medical staff that she had meningitis. Samantha had to remain in her bed for a total of two weeks. The medical staff said that due to the meningitis, Samantha now had a bilateral severe hearing loss. When she recovered, the family was contacted by the local AEA in Sioux City, Iowa. The AEA had sent a nutritionist to the home to work with the family on healthy eating habits of a baby. The parents were also involved with the Early Childhood Intervention team from the AEA and the local school district. The team comprised of an Occupational Therapist, Audiologist, and Deaf Educator. The family also made contact with an area Ear, Nose, and Throat (ENT) specialist to have Samantha’s hearing evaluated, as a second opinion. Shelly did qualify for food stamps and Title 19.
Family System: Shelly and Randy dated in high school and they were teenagers when Shelly found out that she was pregnant. She was sixteen years old and he was seventeen years old. They were still living with their parents when Samantha was born. They started their venture into young adult hood with a special challenge; teenage parents. After they graduated from high school, they got married and had two more children. Randy and Shelly are now divorced and have joint custody. She said that the divorce was not due to Samantha’s hearing loss, but because of other reasons.
Family Structure: Shelly’s relationship with her family did not become damaged due to her pregnancy but instead it improved. One area that it improved was in how they communicated with each other. It began to be a bit more open than in the past, which Shelly said helped her to handle being a single parent because she knew she could approach them with her concerns. They were happy to see that Randy stayed with Shelly and did not leave her when he found out she was pregnant. He showed them that he had values similar to theirs and they respected him for it. They were able to provide a place for Shelly and Samantha to live, since she and Randy were not able to provide a home for Samantha due to them both being in high school. They valued what the family consisted of and that is one of not turning your back on someone that you love. They did not shun Shelly for becoming pregnant at such a young age, but had a positive attitude that everything would be fine and believed that things happen for a reason. Even though Shelly now had a child, she still had responsibilities in the home. She lived on a dairy farm and had her list of chores to do when she arrived home from school. Her mother and father knew the importance of teaching her that you have to work and be responsible in life, and they showed her that by setting examples of how they lived their lives.
Randy’s parents were more supportive financially and they would provide money to go towards buying Samanthaneeded clothing, diapers or formula. They would not hesitate to buy the necessary items that she needed to be a happy, healthy child. Randy’s father owned his own business and had invested in rental property, so they had the means available to them that Shelly’s parents did not. Randy started to learn his father’s business, so when he completed high school he would be able to take over and provide a future for Shelly, Samantha, and himself.
Randy and Shelly had to grow up real fast due to the birth of Samantha. The care free time of hanging out with friends was replaced with work and responsibility. They chose to become involved parents by not allowing their parents to take over caring for Samantha. They reduced the amount of time they spent with friends and stopped all together the “going out” with them. It was difficult at first, but soon they realized the importance of each other and Samantha.
Family Interactions: Randy’s mother would watch Samantha during the day while Shelly was at school. In the mornings, Randy would drive ten miles to Shelly’s house to pick up Samantha and take her back to his house, so his mother could watch her. He did this faithfully everyday before school. Shelly was very grateful that his mother did this because if not, she would not have been able to finish high school. Her parents were busy running the farm, which made it impossible for them to be in the house to care for Samantha during the day.
When Samantha was two years old, Shelly and Randy decided that Samantha would benefit from a Cochlear Implant. The Area Education Agency (AEA) had contacted BoysTown to set up the appointment. Shelly’s mother drove her and Samantha to BoysTown in Omaha for their initial visit. It was comforting to Shelly to have her mother there beside her. Once Samantha was “hooked up”, the family became very excited to see how it would help Samantha. The deaf educator from AEA would come to the home three times a week. She would spend half of her time working with the parents and teaching them signs, and the other half was spent playing with Samantha. During the home visits, Shelly’s parents, her sister Sheryl, Randy, and his mother and grandmother were there learning sign language to use when they communicated with Samantha. When Samantha was growing up, the extended family members didn’t keep up with learning sign language because they got a false sense that she was hearing them and that she didn’t need anything signed to her. Now that Samantha is a teenager, they do not understand why she doesn’t understand them when they talk to her. Shelly had to explain to them that when Samantha was younger, she would agree to what they were saying but didn’t really understand. She had to explain that Samantha had to rely on reading their lips and that she used to pretend that she understood or that Shelly would stand behind her dad to sign to Samantha without him knowing it. Today, Samantha is patient with her grandparents and her Aunt because she knows that they do not know sign language, but deep down she wishes that they did. Samantha will try to lip read and will ask them to repeat what they say if she doesn’t understand the first time. If she still can’t understand, she will ask Shelly to interpret for her. The grandparents feel sad that Samantha doesn’t want to be around them during family get together or holidays because she cannot understand the conversations. She would rather spend time with her friends and their families because they can sign.
As far as the relationship between Samantha and her siblings, she gets along with Cristin better than Brooklynne. The reason for this is because Cristin signs to Samantha the best way that she knows how. It is not perfect sign language, but Samantha doesn’t mind. Cristin is very smart and sometimes Samantha will rely on her to help interpret what others are saying if they go somewhere. Brooklynne on the other hand does not sign or signs very little. It takes her longer to catch on to signs and Samantha does not have any patience to teach her.. Brooklynne has troublespelling words in the first place therefore;when she tries to fingerspell to Samantha the words are spelled wrong. Samantha won’t try to help her and will walk away. Shelly feels that the communication between the two girls would be easier if Brooklynne could sign better or if Samantha was hearing, and if that was the case, they would have a different relationship.
Family Life Cycle Events: When Shelly and Randy were first told that Samantha had a hearing loss due to the meningitis, they were devastated. They thought that Samantha would be helpless, retarded and not be like other children her age. It was hard for them, especially at their young age to know that their first child had a disability. It took about a week for them to realize that she only had a hearing loss and that she would be able to do things like other children. At the time when they were involved in early intervention, Shelly would go to Wal-Mart to look for educational toys and books to use with Samantha. Shelly would buy shape books and animal books, while learning the signs that went along with the books. She would even look for signs that she would need to use during the day or night to communicate with Samantha. The AEA also offered a free sign class, which all of the family members attended and they started to learn Signing Exact English. Randy went to the classes at first and has kept up with signing, but he was busy working to spend a lot of time with Shelly and Samantha.
Whenever they were confronted with a challenge, Shelly and Randy would think about how Samantha could have had worse problems than loosing her hearing. Shelly feels that God must have had a reason for bringing Samantha, this “Deaf child” into their lives. Shelly realized that God had a plan for her as well and that was to use her knowledge of sign language as a career. She is currently employed as an interpreter in Samantha’s school district. If it wasn’t for Samantha, Shelly said that she probably would never have been an interpreter and because of her, she now has a fulfilling job.
Now that Samantha is older, they face challenges on a regular basis. Right now Samantha would like to get rid of her cochlear implant and become immersed in the deaf community. Shelly feels that it is Samantha’s choice to wear it or not to wear it, but Randy feels that Samantha will not be able to function or communicate with others. He would like to see her to continue wearing it. This is one challenge that is yet to be resolved. Samantha feels that when she is off to college, then she will be the one to decide what she does, and she says that the cochlear implant is coming off!
Family Functioning: Shelly and Randy feel that Samantha’s deafness has given them the opportunity to socialize with others that they may never have met. They feel that learning sign language was inspirational. The events that they participated in when Samantha was in early intervention were the sign language classes and they attended family retreats set up for parent to parent interactions, which were hosted by the local Kiwanis.. These were activities that involved parents who had children with a hearing loss. They also participated in the AEA parent support group. All of these events allowed them to connect to other parents that had similar struggles in their lives. She feels that without their support, it may have been a bit more stressful when they had an issue and no where to turn for help. By meeting these other families, she knew that if she had a question, she could call another parent for advice. Because she knows the challenges that may arise with a child that has a hearing loss and the wonderful bonds that can be made when people come together when they are confronted with similar situations, she has contacted her employer and has expressed interest in starting a local parent group for those families who have a child with a hearing loss.
After speaking with Shelly and learning about her family’s structure, I have learned a similarity to my own. She became pregnant before she was married and still in school, even though I was older than she when I became pregnant, I was also not married. This was a struggle because I was just starting my career, lived far from my family and did not have a lot of money to support a child. My family and my husband’s family supported us by not judging or shunning us. They offered support financially, purchased clothing and visited us as often as they could. She was raised with the same belief as I was, and that is that things happen for a reason. God has a reason for the things or people that he brings into our lives and we try not to question it. Just as Shelly and Randy needed to seek assistance from Health and Human services, we had to do the same when we were struggling with raising our children.
Greatest Joys/Challenges/Difficulties: Their greatest joy for Samantha now is to see how she has matured into a wonderful young adult, with strong beliefs for what she wants in life. She is planning to attend Gallaudet after she graduates from high school and that is what every parent wants for their child; to see him/her enter college and to get a job. They started out wondering if Samantha would be able to succeed in school and life, now they know that she has every chance in the world to do so and her hearing loss is not stopping her. One of the challenges that they are facing is the desire Samantha has to attend the ModelSecondary School for the Deaf in WashingtonD.C. She would like to finish out her senior year there and then transition into Gallaudet. It is not just right around the corner and they want to be sure that she has all of the knowledge needed to live independently, away from home. Shelly is not sure if this would be the right time for Samantha to leave because she would like to see her complete her education in Nebraska. They also know that it would be a perfect opportunity for her. To date, this is still a topic up for discussion.
Daily Routines/Challenges/Priorities: When Samantha was two and a half years old, she was in a preschool setting in Sioux City, but at the time the family was living in Dakota City, Nebraska. They wanted Samantha to participate in the preschool where her deaf educator worked and since they already had a connection with them; it seemed like the best choice at that time since Sioux City would provide the transportation to and from school. Shelly did not work, so during the day she was able to have a break. Randy was very good at playing with Samantha when he arrived home from work but he did not help in teaching Samantha new things. About mid year, she started to become bored at preschool, so they met with her teachers and decided that she should start kindergarten. She would attend half day preschool and then finish the day in kindergarten. The next year, the staff wanted Samantha to stay in kindergarten and not progress into the first grade. This was not what the family had wanted for Samantha. Shelly and Randy addressed this at the annual IEP and expressed their desire for Samantha to progress with the rest of her classmates. They were able to work with the team and she has been on track with her peers to this date.
Samantha is just like any other kid and she enjoys going to a restaurant on the weekends with her family. At first when Samantha was younger, Shelly felt uncomfortable signing in public because she felt that everyone was staring at them, and she didn’t want to draw attention to Samantha or the family. But as Shelly’s signing skills have increased over time, she no longer feels uncomfortable when people stare. That feeling of wanting to hide the fact that Samantha is deaf and needs to sign has turned into pridedespite the fact that Samantha has a hearing loss; they are still able to do and act like a normal family.
The girls and Shelly like to go to the movies occasionally too. Samantha is able to communicate independently with those that she meets at the movie theatre by reading their lips. If she is not understood when she is talking, she will ask for a piece of paper to write it down for them. Sometimes she will ask her mom or Cristin to interpret for her if she doesn’t want to ask for something to write on. When she is at work at Wacky Bear, which is located at the local mall, she will sometimes have to write things down because there is no one to interpret for her. Shelly worries that the customers or her boss will treat her differently or make fun of her because she has a hearing loss. So far Samantha has not been treated differently and Shelly knows that she is a strong person, but as a parent she will always want her child to be treated fairly.