Interview 1
Family Interview Report
Lindsay Hosbach
Family Centered Services
University of Nebraska, Lincoln
Demographics:
I interviewed Kathy who is the mother of a five year old daughter with Down Syndrome. I met Kathy in 2005 when her daughter began preschool in the Early Childhood Special Education classroom that I am a paraprofessional in. Her immediate family members are her husband John, oldest son Mark, daughter Chloe, and son Roman. I met with Kathy on two different occasions, but our biggest correspondence method was through email, with roughly 10 email contacts total. Their family was eligible for early intervention services when Chloe was born due to her diagnosis, but they chose to wait. They began receiving home-based services through the Omaha Public Schools when Chloe was four months old. Kathy expressed her desire to get to know her baby first before worrying about her disability. She stated that the best advice she has ever received was from her pedestrian shortly after Chloe was born, “Take her home and treat her like any other baby. Love her, feed her, and clean her. That’s all.” Luckily Chloe has not had any major medical complications.
There are a variety of community resources that their family utilizes occasionally, and Kathy mentioned that she knows there are supports out there for her when she needs them, she just chooses not be completely involved. Kathy began to go to PRISM meetings through PTI Nebraska when Chloe was about 14 months old. The family is also involved in the Omaha Down Syndrome Parent Network and participates in the yearly Buddy Walk and other functions they have. Chloe attends the Kids Club that is offered through the Ollie Webb Center – Arc of Omaha once a month, which provides a place for Chloe to interact with other children, and a period of respite for Kathy and John. One of Kathy’s friends has a daughter with Down Syndrome that is Chloe’s age, so the girls attend the Kid’s Club, and Kathy and her friend usually go out to dinner.
There are several recreational activities that are tailored for children with disabilities that Chloe also participates in. She started soccer last year through TOPSoccer Bellevue and had a great time running through the field. Every child that participates in that program has a buddy who helps them during practices and games. Chloe was also enrolled in a dance class through Accapricio Dance Company but she wasn’t able to handle the noise of the tap shoes, or wearing a leotard so she has stopped that program for now. Chloe also takes swim lessons through different community programs.
Family System:
Kathy included the members of her immediate household in her initial definition of family, but once the discussion got going, she also mentioned the support she receives from her mother and her two sisters. The majority of their family lives in the Omaha area, and they spend a lot of time together. Although both parents attend conferences, IEP meetings, and school functions, Kathy is the one who takes responsibility for understanding Chloe’s IEP and addressing comments and concerns to her teachers. Kathy explained to me that John is the one who is emotionally supportive to her and tries to look at the bright side of things which creates a good balance in their marriage. Their family values education as well as their ability to communicate to each other and maintain their cohesiveness.
John owns his own business, and Kathy stays home with Chloe and Roman during the days. Their older son is in high school and with their conflicting schedules, it makes it difficult for the family to spend time together doing activities outside of the home. As a family they like to go to their neighborhood park, read books, and spend time together at night playing games or watching movies. Kathy is the one who makes sure that Mark and Chloe get to school on time, and she is also the one who takes them to their recreational activities. Daily interactions for Kathy include taking care of the house, interacting and playing with the children, and being supportive to her oldest son with his activities and social life. She calls on outside help and support from family and friends when needed. One of her sisters who lives close to their house comes over on Mondays, Wednesdays and Fridays to help Kathy get Chloe ready for preschool. On those days Chloe attends a community based preschool in the morning, as well as the ECSE classroom in the afternoons, so her sister helps with the transition process. The family typically socializes together, but Kathy and John take turns doing social activities independent of one another as well together when they have someone to watch the two younger children.
There have been stressful events and transitions in the family in recent years, but they have gotten through that with support from family and close friends. When Roman was born, Kathy’s sister stepped in to help with daily routines when needed. Kathy noted that it was difficult to balance the need to interact and take care of both children, but that as in any family they adapted and she was able to meet their needs. During the day Kathy does a lot of singing songs and dancing to music with the two younger children. Chloe also enjoys watching the “Big Cumfy Couch” on PBS and reading books, which Kathy and Roman enjoy as well.
According to Kathy the supports that the family received did not change much once Chloe was born. Their extended family has always been available to help out, and Kathy’s sister has helped out more since Roman was born now that there are two young children to care for. When Kathy needs assistance with understanding legality issues or educational information, or finding resources that are available for Chloe, she contacts people who are involved in the Omaha Down Syndrome Parent Network, including people she has become friends with through support groups and workshops. Since the family lives relatively far from the ECSE classroom that Chloe attends in the afternoons, if Chloe gets sick at school, or if she can’t pick her up for some reason, she has her sister that lives nearby to the school who can come help out. Kathy pointed out that she has people in her family and friends that she can call on for help, with unexpected events, or for some relief, but she feels that she is able to meet the needs of the people in her family with the help of a few people, namely her sister. In general the family system seems to remain cohesive and their ability to adapt to changes is due to their ability to stick together and call on outside supports when needed.
I learned a lot about their family system through some open ended questions and some observations. I discovered that our families have a lot in common, even though at first glance our families do not look similar at all. I grew up in a single parent household, but like Kathy’s family, there was outside help from extended family such as my grandparents, aunts, and family friends. We also hold similar values, in that education is a priority, and that family time together is important. We did a lot of playing games together, practicing sports, going to community events together, and having dinner together. Some differences between our families concern the roles that different family members held. My mother worked full time and my older sister and I held a lot of the household responsibility as well as taking care of our younger brother, whereas Kathy’s family relies on her husband’s business for income, which allows her to stay home with her children. Like Kathy and her family, my family relied on the help of a few people when we needed it.
EcoMap:
Initially it was difficult to create the EcoMap because it was hard for Kathy to look past their immediate family and supports to other people that are involved in their family on a regular basis. I drew up a rough draft based on information I had gathered from several emails and our initial contact, and she added her neighbors as well as several close friends and family members. When she looked at the final copy of the EcoMap she mentioned how lucky she is to have her family nearby, her mom, sisters, and John’s parents because they do so much together and offer their family with a lot of support. She didn’t mention any people who they have a stressful relationship with, because she said in general they spend the majority of their time with close family and friends and that even John’s work environment is relatively stress-free. When I look at the map I see that she has a lot of contact and a strong relationship with her family, and that her relationships with Chloe’s teachers and her close friends are also notable in the importance of these people in her family. By seeing the EcoMap in it’s entirety it gives me a better understanding of the people she has the most contact with as well as the relationships that are important to the family.
Greatest Joys/Challenges/Difficulties:
One of the most difficult issues the family has had to deal with was Chloe’s initial diagnosis. It was through these conversations that I got a better understanding of Kubler-Ross’ Stage Theory, as well as Moses (1983) grieving process, because Kathy explained going through the stages of denial, guilt, depression, anger, and acceptance. Kathy had a triple screen test which came back normal, but she described knowing intuitively that something wasn’t right even though the test showed everything was fine. When Chloe was born the doctor said to them, “I think we have a problem” and it was the pediatrician who finally came in to tell them the news. The months following were hard for the family as they went through the grieving process and tried to understand what had happened. She said she wished she had known so that she could have been prepared, but also mentioned that nothing could have prepared her for the feelings that washed over her and her husband. Kathy mentioned feeling guilty about having a baby with a disability, as well as anger with the whole situation. She had the support of her family, and most importantly her sister who has been a constant presence since Chloe was born. She was there to offer advice, read the materials Kathy was given about the disability, and was there to comfort Kathy when she couldn’t stop crying. All of this support and understanding helped her to accept Chloe as her daughter and helped the family to move on as normally as possible.
As a family, the most positive experiences they have shared together have been with the accomplishments that Chloe has made. Kathy explained to me that when you have a child with a disability it seems to take forever for them to reach milestones, but when they finally do a celebration begins. The milestones that Kathy pointed out include, walking, being able to jump with both feet off the ground, talking, and most recently saying her phone number. At first it was difficult for Kathy to watch typically developing peers doing things that Chloe was unable to do, but now she is able to cheer Chloe on, and with the rest of her family, rejoice in what she is able to do.
Daily Routines/Challenges:
The family routine has changed as the children have gotten older, but for the most part their roles have remained the same. When Chloe was born, the responsibility of taking care of two children changed the routine, and required some additional help from family members. Roman was born a few years after Chloe, and with Chloe at different preschools, there have been additional challenges of getting Chloe ready for school and transitioning between the two. Some of the most recent challenges the family is working on at the moment is potty training Chloe. Both of the preschools have been working with Chloe and her family to offer encouragement and reinforcement to help the family with this process. Initially Kathy indicated this as a challenge that she was going to find most difficult (at the beginning of the semester). These examples were discussed in the ABC Context Matrix as Chloe is working on self-help skills and independence in her home life, and school environment. With everyone working together (family and teachers) the training is continuing and is a good example of the cohesion found within the family system.
Some other daily routine activities involve reading at home. This is done on a daily basis, and is something that Chloe particularly enjoys. Kathy expressed to me her love for books and mentioned that there house is full of them. This activity changed when Roman was born because Kathy had two young children to care for, and it was difficult to sit and read to Chloe unless Roman was napping. Kathy told me that Chloe does not take naps anymore and hasn’t for the past couple of years. This is a routine that changed around the time that Roman was born. Kathy manages to include activities, including books into their daily routine, and Roman is starting to enjoy a lot of the songs and books that Chloe enjoys. These activities have been helpful to Chloe in the classroom environment where she does a lot of music and movement activities as well as reading in the book area.
Educational Priorities:
With John at work and her older son at school, Kathy spent a lot of time with Chloe before she started the ECSE program working with her on her colors, numbers, and her motor abilities with the home based staff. She indicated that the challenges she found with Chloe’s development were prioritized by the home based teacher, but that the home based teacher was the one who decided on the objectives. With Chloe in preschool, she is still able to work with her on the skills she needs such as counting, knowing the letters of the alphabet, and pre-writing skills, and these objectives that are priorities to her are included in the IEP documents. Kathy noted that in general they (Chloe’s teachers and herself) are on the same page as far as what to expect from Chloe in the educational setting.
From the beginning, the family has wished a life for Chloe as close to that of a typical child’s as possible. They want her to learn the same things as her peers but at her ability level. They want her to be in a regular education setting, and to have lots of friends and social interactions in her new elementary school. Overall they want her to be accepted, which is what Kathy expressed as her biggest concern for Chloe. In the future she wants for Chloe what ever is in her best interest, and at the moment has a hard time visualizing what that might entail.
Experience with school/agency “systems”:
As mentioned earlier, the family began home based services when Chloe was four months old. It took awhile for Kathy and the home based teacher to find middle ground and to understand where each person was coming from, in other words it took awhile for their relationship to get started. Kathy stated that she was really unsure with the home based teacher at first because they were not on the same page as to what Chloe should be working on. She described that in the beginning, the home based teacher was very concerned that Chloe was not rolling over and would lay Chloe on the floor and physically assist her in rolling over by turning her hips and that Chloe would cry and scream the whole time. This was very hard for Kathy because she couldn’t understand why the teacher would push this issue when Chloe cried so much. After talking with the home based teacher’s supervisor, things changed and the teacher began explaining things more and the reason for working on them. This incident made me think about the information we have read recently on collaboration, which is something that did not seem to happen in the initial stages, and seemed to be more of a child centered approach rather than a family centered one. In the end they had built a positive relationship and Kathy expressed her appreciate towards the teacher for helping Chloe with all that she accomplished.