FAMILY INTERVIEW

Family Interview: The Jones FamilyJulia HartThe George Washington University

IntroductionI met with Mrs. Jones in her home in Charles County, MD to learn about her family and their experiences with disability. I know Mrs. Jones through her sister, who is a friend of mine. Mrs. Jones has four children, ages 18, 15, 12, and 1. The three older children have all been identified as having a learning disability and each child has an Individualized Education Program (IEP). The youngest Jones child, Brandon, is 21 months old. He was born prematurely at 28 weeks gestation. Brandon does not currently receive any early intervention services. The oldest Jones child will be a freshman at Morehouse College in the fall. Mrs. Jones is in the Navy, and the family recently relocated back to Maryland after spending several years in Jacksonville, FL. Mr. Jones was not present for the interview and maintains only minimal contact with the children. Mr. Jones chose to remain in Florida while his wife and children moved to Maryland. He does not provide any input into the childrens educational plans. While the couple are not divorced, they do not speak to each other except through the children or another third party. Cultural BackgroundThe Jones family is influenced by three cultural affiliations. The family is African American, Christian, and part of the military. Military culture can be a challenge to define. Strom, et al. (2012) write that based on the premise that we are all multicultural individuals who possess personal, political, and historical culture, military culture is viewed as a dimension of personal identity similar to religion or educational background (p. 68). Teamwork and collectivism are values instilled in service members throughout their training (Strom, et al.). Military service often requires frequent moves, which can be taxing on families. Military families are three times more likely to face relocation than civilian families (Bradshaw, Sudhinaraset, Mmari, & Blum, 2010). Military children may face as many as nine relocations during their schooling (Bradshaw, et al.). While there is no research indicating the effects of military relocation on children with disabilities, there is data showing that parental attitude and adjustment has a strong influence on childrens coping (Palmer, 2008). In the past, researchers coined the term military family syndrome to describe military families consisting of authoritarian father, depressed mothers, and uncontrollable children (Palmer). Recently, this stereotype is not as accepted. Furthermore, studies have shown The authority, control, structure, continuity, and expectations common in military communities may decrease the rates of disruptive behavior and increase the emphasis on academics among military adolescents (Bradshaw, et al., 2010, p. 86). Research into African American families who have a child with disabilities has shown that African American mothers perceived less personal burden in rearing a child with a disability than did white mothers (Rogers-Dulan, 1998, abstract section). This lowered level of stress among African American mothers has been attributed to their strong family networks and religious beliefs (Rogers-Dulan). King (1998) also found that strong religious beliefs help to uniquely equip African American families to the adjustment of a family member with a disability (p. 39). There have been many studies that document the centrality of the black church to the social, spiritual, economic, and political development of the African American community (King, 1998, p. 39). Turnbull, Turnbull, Erwin, Soodak, and Shogren (2011) write, many families derive tremendous instrumental and emotional support from their religious communities (p. 56). Religion can provide strength and a sense of well-being in the face of lifes stresses (financial, health, emotional (Poston & Turnbull, 2004). Poston and Turnbull further explain that many religious families attribute meaning to having a child with a disability:For many families of children with disability,faith and prayer took on an additional role.About half of the families who shared perspectives on their spiritual life spoke about howthey used their faith as a way to make some sense of having a child with a disability. Formany, they viewed their child as a gift from God. This gift was viewed either as a blessingor as a test of their faith. (p. 102)Parental JourneyComing from a large family, Mrs. Jones expected to have several children of her own. She gave birth to her first child, James, when she was 27 years old. James was born at 35 weeks gestation, but spent only minimal time in the NICU and reached his developmental milestones within the typical time frame. His early childhood was what she had expected, as she had helped her own mother to raise several of her younger siblings. As James started school, Mrs. Jones noticed that he was struggling to read and follow auditory directions. James was in third grade by the time an evaluation was completed and he was in fourth grade when he began receiving special education services through an IEP. James was identified as having dyslexia and an auditory processing disorder. Mrs. Jones expressed relief at having a diagnosis for her sons struggles. She explained that her husband was more traditional and less educated than she, and that he never really accepted their sons diagnosis of learning disabilities. Mr. Jones blamed his childs struggles on laziness and said that the boy needed to work harder. Mrs. Jones explained that neither she nor her husband had any struggles in school, so there was a significant adjustment for her to understand that school would not be so easy for her son. After years of hard work with her son, Mrs. Jones is extremely proud that James will be attending Morehouse College in the fall. Although happy for her son, Jones is still concerned that his disability will affect his education and has been working to connect her son with the disability services offered by the college. The Jones second child, Maya, was born at 37 weeks gestation. She had a typical early childhood and seemed to be quite different from her older brother. Because her disability presented differently from that of her brother, Mayas learning disability was not discovered until second grade. During our interview, Mrs. Jones did not express regret in not identifying her daughters disability earlier. She explained that, at the time, she did not have the experience and knowledge that she has now, so there was no way for her to have seen it. Mayas disability is less profound than that of her older brother and younger sister. She does have an IEP, but has received minimal services and does not struggle with school in the ways that her brother and sister do. This summer, Maya attended a college preparatory program for high schoolers at a local college. Ally, the Jones third child, was born prematurely at 32 weeks. She spent some time in the NICU, but she caught up to her developmental milestones within her first two years. Mrs. Jones noted that Ally was quite different from her first two children. Her behavior in early childhood led Jones to expect the child would struggle in school. In kindergarten, Ally was evaluated for ADHD and learning disabilities. She has an IEP and has received services for her disability since kindergarten. Mrs. Jones has not been satisfied with the education Ally received this past year in Maryland, and has arranged for her to return to the Middle School she attended in Florida. Ally will stay with family while she attends the Magnet School that Mrs. Jones feels will best support her daughter. The baby of the Jones family is Brandon. Brandon was born at 28 weeks gestation. He spent several weeks in the NICU before being released home. Almost immediately following Brandons release from the hospital, Mrs. Jones and the four children relocated to Maryland so that she could work at Andrews Air Force Base. She explained that this was an unhappy move for her, especially because she had an established support network in Florida. While Mrs. Jones has one sister in Maryland, most of her family is in the South or Midwest. Mrs. Jones did not tell me that her husband had not moved with them but I knew this from my conversations with her sister. Mrs. Jones did not display much emotion in telling me about her very premature birth. Perhaps her previous experiences with prematurity had lessened the shock. Brandon does not receive an early intervention services in Maryland. According to Mrs. Jones, he would have been receiving services in Florida, but that Maryland makes it too difficult. While the child is not getting intervention, he has been given hearing and vision screenings and is well-monitored by a pediatrician. Jones explained that he has been 3-5 months behind on all of his developmental milestones, and that she is mildly concerned about this. At 21 months old, Brandon is walking and interacting with adults. He is not, however, using any words. Jones informed me that she planned to have Brandon evaluated for autism in the near future. Mrs. Jones has developed her own plan to combat the effects of prematurity that Brandon faces. Since birth, Brandon has been on a nutrient-rich diet. He eats no meat, but lots of leafy and dark green vegetables. Jones referred to him as her experiement baby and that she thought it was worth a try to see if such a diet would have a positive effect on his development. She expressed that his temperament and behavior were quite different than her other childrens, and she thought that there was a chance he would not have a learning disability like his siblings. Mrs. Jones did not express any grief as she told me the story of her children. She is a confident woman who projects strength and resilience. She spoke of learning disabilities and prematurity in an even tone and seemed very accepting of her childrens diagnoses. I suspect her faith and military background have provided her with the strength and faith necessary to continue on in the face of great challenges. Family SystemThe Jones family system includes mother-child parental interactions, an extended family system, and sibling relationships. Mr. Jones lack of involvement in the childrens lives is one key feature of the Jones family system. Mrs. Jones is a strong, hard-working mother and has worked very hard to overcome this lack of a marital subsystem. A strong extended family provides added support to the Jones. The Jones children have grandparents and aunts and uncles to support them and their mother. Even though the family is not nearby, they find ways to be in the childrens lives. Mrs. Jones told me that she speaks to her mother on the phone daily and while I was with her she received phone calls from three of her sisters. She also informed me that the children spent several weeks with their aunts this summer. Mrs. Jones was very reluctant to discuss her husband during our interview. While Mrs. Jones did volunteer that her husband did not want to be involved in the childrens schooling, I was unable to discover if he had any other ongoing parental responsibilities prior to the move or is providing any financial support. From what Mrs. Jones sister has told me, I expect not. Because there is a large age gap between the older Jones children and the baby, they are quite helpful to their mother in caring for Brandon. The older children have a strong bond and provide support for each other. Mrs. Jones explained that their cross-country move has strengthened the childrens relationships with each other. Values and BeliefsMrs. Jones was raised in a military family herself. She says that her father taught his children the importance of patriotism and serving ones country. Jones joined the Navy after completing college as she was unsure of her job prospects otherwise. Once in the Navy she completed two Masters Degrees. Jones explained that she grew up valuing education, and that the military is a great means for funding that education. She is using her G.I. Bill money to partially fund her sons college education, and will encourage her son to join ROTC to pay for the remainder. Hard work is extremely important to Mrs. Jones. She informed me that she does not allow her children to use their disabilities as an excuse, she expects them to try their best even if their grades are not very high. The children take honors classes, because Mrs. Jones would rather they learn more from a challenging class than get a higher grade in an easier class. Mrs. Jones explained that while her extended family has more conservative beliefs, they are very inclusive. Her family brings in friends and treats them as family. Her children have grown up with lots of aunties that arent blood relatives. She further explained that each new adopted family member has helped to change the culture and understanding of her family. The family is very open minded and like to learn from each other. Jones said that her family was quite different from that of her husband. According to Mrs. Jones, Mr. Jones maintains a more common Black opinion that learning disabilities are just laziness, and that the children should be encouraged to work harder. Christianity has provided a sense of belonging and foundational values to Mrs. Jones and her children. Church attendance is important to the family. At the time of our interview, two of the Jones children were at a Christian summer camp in North Carolina. Mrs. Jones feels that summer camp allows the children a sense of normalcy and belonging after working so hard during the school year. She has sent the children to Christian schools in the past, explaining that she finds it beneficial for the children to be around good Christian people. Risk and Resilience The Jones family has faced multiple challenges. While the children have an educated, involved mother, their father has minimal involvement in their lives. Multiple long-distance moves also put a stress on the family. The premature birth of a child and spending time in a NICU are further challenges they have faced. Finally, having multiple children with disabilities is taxing on the parent and requires stretching already limited resources (time, money). Fortunately, the Jones have many strengths. Mrs. Jones is a well educated woman. Her job is steady and provides an income that allows her to support her children in the manner she chooses. Her military employment also includes health and social benefits for her and the children. Mrs. Jones has a supportive extended family (aunts and grandparents) that care for her and her children. Having multiple children with disabilities has given Mrs. Jones much experience in working with the special education system. She has an organization method for IEPs and other related documents and is well-versed in her rights. Mrs. Jones military affiliation and faith have provided her with values and beliefs that give her strength in the face of challenges.

ApplicationA first step in working with the Jones family would be to have Brandon evaluated for Early Intervention services. Because he is at risk for a disability due to his prematurity and his family history, it is essential that his growth and development be carefully monitored. As Brandon is nearing two years old, I have some concerns regarding his lack of speech. Even at his adjusted age of 18 months, I would expect a child to be speaking a few words. Because his hearing has been evaluated, an evaluation with a Speech and Language Pathologist would be a first step. As a service coordinator, I would connect Mrs. Jones with some of the resources available to military families, such as the Navy Exceptional Family Member Program. Mrs. Jones mentioned that Navy doctors had been invaluable resources when she was struggling to have her older son diagnosed, so I suspect she will be willing to utilize military services for her youngest child. Mrs. Jones has a great body of knowledge relating to learning disabilities and the IEP process. She knows the resources available to support the education of her older children. Mrs. Jones does not, however, have experience with Early Intervention services. Because she is a strong advocate for her older children, I suspect that she will easily take to the role of advocating for Brandon.Mrs. Jones did not tell me Brandons exact birth weight, saying he weighed just two pounds. Since two pounds is under 1200 grams, he will qualify automatically for Early Intervention services in Maryland (Maryland State Department of Education, 2008). It is likely that the interstate move immediately following Brandons release from the hospital took Mrs. Jones focus away from finding services for the baby. As Mrs. Jones has had some negative experiences with receiving Special Education services in Maryland, it may be difficult to gain her trust as a service provider. Utilizing the Seven Principles of Partnerships and Trust, as outlined by Turnbull, et al. (2011) should help to develop a relationship with Mrs. Jones. The most crucial element of a partnership is trust, so I will work hard to show Mrs. Jones that I can provide valuable services for her son and that I value the work she is doing with the child. She is an educated woman and values professionals that have knowledge to help her children. Because Mrs. Jones already has such strong advocacy skillsfrom supporting her other children, she will take on the role of advocate for Brandon with ease.ReflectionMrs. Jones was a very willing participant in our interview. She did almost all of the talking during the two hours I spent at her house. I was able to ask very few questions because Mrs. Jones spoke so readily. Fortunately, most of the information I wanted to know was shared by her as she told me her story. Jones was not at all emotional as she relayed the disability history of all of her children. She is a confident and well-informed mother and her children are fortunate to have her as an advocate. I was confused, however, that Mrs. Jones spoke frequently of her husband, even though I was aware the couple were no longer together. It was an uncomfortable topic, and one that I chose not to bring up. Mrs. Jones was very clear in telling me that her husband had no part in the childrens educational plans but she did not once mention that he did not live with them.

ReferencesBradshaw, C. P., Sudhinaraset, M., Mmari, K., & Blum, R. W. (2010). School Transitions Among Military Adolescents: A Qualitative Study of Stress and Coping. School Psychology Review, 39(1), 84-105.King, S. V. (1998). The Beam In Thine Own Eye: Disability and the Black Church. Western Journal Of Black Studies, 22(1), 37.Maryland State Department of Education (2008). After the NICU: A guide to the Maryland Infants and Toddlers Program. Retrieved from http://olms.cte.jhu.edu/olms/data/resource/5064/AfterTheNICU.pdfPalmer, C. (2008). A Theory of Risk and Resilience Factors in Military Families. Military Psychology (Taylor & Francis Ltd), 20(3), 205-217. doi:10.1080/08995600802118858Poston, D. J., & Turnbull, A. P. (2004). Role of Spirituality and Religion in Family Quality of Life for Families of Children with Disabilities.Education & Training In Developmental Disabilities, 39(2), 95-108.Rogers-Dulan, J. (1998). Religious connectedness among urban African American Families who have a child with disabilities. Mental Retardation, 36(2), 91.Strom, T. Q., Gavian, M. E., Possis, E., Loughlin, J., Bui, T., Linardatos, E., & ... Siegel, W. (2012). Cultural and ethical considerations when working with military personnel and veterans: A primer for VA training programs. Training And Education In Professional Psychology, 6(2), 67-75. doi:10.1037/a0028275Turnbull, A., Turnbull, R., Erwin, E. J., Soodak, L.C., & Shogren, K.A. (2011). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. Upper Saddle River, NJ: Pearson Education, Inc.

Appendix A.Interview Questions

-Tell me about your older children: How did you discover their disabilities? How old were they? Do they all have IEPs?- Tell me about the baby: Was his birth different from the others? Do you have any concerns about his development? Do you worry that he will also have a learning disability?-Was it stressful having a baby with three older children to care for? -How has your family accepted the childrens disabilities? - Have you found that religion/spirituality has helped you through the process?-Has the military provided you with any assistance? Do you think your training has given you strength?