Katie Magee
April 20, 2007
Family Interview
Demographics:
I know the Ohrt family my high school churchin Omaha, Nebraska. The Ohrt family is comprised of the following people: Patty, the mother, Tom, the father, Kellie, 24 year old daughter, Katie, 21 year old daughter, Kaitlyn, 19 year old daughter, and Kyle, 9 year old son. I was friends with their daughter Kellie in high school and got to know the entire family quite well through the time I spent at their house. Patty was more than happy to meet with me a few times and tell me about her experiences raising Kyle. I met with her two times in person and we talked three times over the phone.
Family History of Special Needs: With three girls in the family, the Ohrt’s had always wanted to have a little boy. They became passionate about international adoption in 1998 and decided to adopt a baby boy from Romania. The adoption process was expensive and drawn out over several months. By the time they were able to bring Kyle home he was 13 months old.It didn’t take them long after they got Kyle to notice that something wasn’t quite right. He never made eye contact with people, didn’t make any noises or even cry, and had a very flat affect. They took him into their pediatrician who referred them to adevelopmental pediatrician. Within two months of getting him, the developmental pediatrician informed them that Kyle was autistic. Patty realized quickly that there was no way she could work and care for such a high needs child, so she quit her job. The Ohrts immediately began early intervention services through the public school system.
The early childhood teacher and speech language pathologist who were assigned to work with Kyle didn’t know very much about autism, according to Patty. Patty quickly became frustrated with the school professionals because they tried to implement interventions that were not developmentally appropriate for Kyle. For example, the teacher wanted to use a schedule board with picture cards and the speech lady tried teaching Kyle sign language. Patty reported that none of the interventions were individualized to meet Kyle’s needs and according to her research, they were not evidence based interventions for toddlers with autism. The school seemed to have pre-packaged interventions that they used with all autistic kids. The teacher also gave the family a false sense of hope by telling them that she didn’t think Kyle was autistic. The Ohrts wanted to believe the teacher, so they took Kyle to a psychologist to get a second opinion. The psychologist reaffirmed the doctor’s initial diagnosis that Kyle was severly autistic. This brief uncertainty took the Ohrt family on an emotional roller coaster. When the family realized the true severity of their son’s disability and decided Kyle wasn’t going to get the services he needed through the public schools, they began to look into other treatment options.
Some extended family members helped the Ohrts research autism treatment programs in the state and throughout the Midwest. After much investigation of all their options, the Ohrts decided to hire a consultant from the Wisconsin Early Autistic Program (WEAP) who the paid to fly in once a month to help them with service coordination and programming for Kyle. This was an incredibly costly service, but the Ohrts were unable to find adequate services in Nebraska, and were willing to pay any price to help their son. They soon had specialists and professionals coming in and their house all day long six days a week. This routine continued from when Kyle was 18 months old all the way until he went into kindergarten at age six. The specialists included teachers, therapists, speech language pathologists, occupational therapists, physical therapists, and behavioral consultants. The family had to adjust to a new lifestyle where everything centered on Kyle and his needs. Over time Patty noticed that they became more distant from their friends and some family, as no one really understood what they were going through, and the Ohrts were rarely able to leave the house to socialize.
Family System:
The Ohrt family is an extremely close, religious family. Patty and Tom have been married for 27 years and they have raised four wonderful children. Tom is a successful anesthesiologist and Patty is currently a stay-at home mom. Patty is the first to admit that bringing Kyle into their family placed a definite strain on their marriage. The new routine of caring for an autistic child, financial strain of paying for intensive services, and time Patty invested in caring for Kyle caused the family high levels of stress. Tom is the definite leader of the family, the person who has the final say in all important decisions. He seeks input from the other family members and turns to God for guidance before making these decisions, however. Patty is the caretaker. She is the main person who has taken responsibility for caring for Kyle. Because Tom works long hours as a doctor, she spends much of her time at home either alone or with Kyle. When the girls are home, they help Patty out as much as possible, but as she said, “Kyle is Tom’s and my responsibility, not the girls’.”
The Ohrt family values education, spending time together, providing unique, learning experiences for their children, serving God in all that they do, and showing unconditional love for each other. The three girls in the Ohrt family are best friends with each other. While their parents were busy caring for Kyle in his early years, the girls turned to each other for support, guidance, and understanding. The Ohrts are closely connected to their extended family, specifically Patty’s parents and two of her sisters who all live within 30 miles of Omaha. These people were a vital source of social support over the years.
Overall, the Ohrts are a highly cohesive family. Although the girls have moved out of the house, the parents make a point to talk to each one of them daily, and they go onfrequent family vacations and weekend retreats. The first couple years of Kyle’s life, Patty admits the family was unable to spend as much time together, which brought about some distance between family members at times. Patty feels guilty that she was emotionally unavailable to her girls for periods of time when Kyle was little. The stress, anger, frustration, and sadness she was going through took away from time she would have liked to spend with her girls. Because the Ohrts value family relationships so much, however, they have found a way to stay close through all of their challenges. Over the years, they have also learned to be a highly adaptable family. This was not always the case, however. When Kyle first entered the family, they had a difficult time adjusting to the life of raising a child with a severe disability. When they were raising the girls, Patty and Tom did not need to have strict boundaries or an extremely structured environment. They took frequent vacations and went on spontaneous family outings. This pattern quickly changed when they adopted Kyle. In order to create the best environment for Kyle they had to build in a lot of structure and create a consistent, routine that did not include a lot of traveling or spontaneous outings. The Ohrts also had to adjust to having teachers and therapists coming in and out of their house all the time, since they had previous been a rather private family. Over time, however, they learned to adapt to their new lifestyle.
EcoMap:
After creating an EcoMap, Patty was surprised to see the number of social supports in their life. She identified strong ties between all of the immediate family members and the following people: Patty’s parents, two of Patty’s sisters, the people in Patty and Tom’s small group bible study, and a few select in-home therapists, in-home student workers, and the therapists at the Monroe Meyer Clinic. The Ohrt family has frequent contact with all of these individuals and they feel a great sense of support these people. Other individuals who comprise the Ohrts social network include: two of Patty’s friend from church, one of Tom’s close friends, Kellie’s fiancé, Patty’s Women’s bible study, a paraprofessional from the school who has babysat for their family over the years, and the men in Tom’s doctor bible study. The Ohrts have less frequent contact with these people, but they know that they can turn to them for support when needed. Tom’s parents, one of Patty’s sisters, and all of Tom’s siblings are the most distant people in the Ohrts social network. Once Kyle entered the Ohrt’s lives, these people slowly drifted away and made it clear that they did not have the time to help the family out with Kyle.
Greatest Joys/Challenges/Difficulties:
Joys
The Ohrts believe that they are better people because of Kyle. Patty knows that all of her girls have been deeply moved by having a brother like Kyle, as each one of them about how their lives have been changed for the better in their college essays. Patty has learned to celebrate every glimpses of growth that Kyle makes, no matter how small. She said that it has truly been a joy to be able to work with some excellent professionals over the years. The in-home therapists and consultants have become some of the Ohrt’s closet friends, and Patty would not trade their friendships for anything in the world. The Ohrts also know that Kyle has touched the lives of all the people who have worked with him, giving them a true challenge and forcing them to learn and grow.
A major triumph that the Ohrts have seen since getting Kyle is to raise awareness about kids with special needs in their church and community. When Kyle was little, they couldn’t bring him to church because the church was not equipped to care for children with special needs. The Ohrts quickly became advocates for all of the families in the congregation of over 2000 members who had children with special needs and helped the church set up a Sunday school program for these children. The program has been running for over five years and has expanded to offer a babysitting program on Friday nights for parents of children with disabilities. They have also become advocates in the community for families of children with special needs and have set up several fundraisers for families with autistic children who need financial support to pay for services for their children.
Challenges
There have been many challenges that the Ohrts have faced over the years. Some of the greatest frustrations have come from not having access to high quality services in Nebraska and not getting enough financial assistance to pay for services for Kyle. Because autism is a fairly new disorder and there is a lack of consensus on the best treatments, the Ohrts have been frustrated by not knowing which treatments were worth paying great amounts of money for and which ones were not. When Kyle was five years old, they spent over a year and $50,000 working with a consultant who had strong ABA training to decrease Kyle’s self stimulation behaviors through in-home treatment. For kindergarten the Ohrts decided to send him to a school for autistic kids called “Project Best” at the Monroe Meyer Clinic in Omaha. They paid $200/day, five days a week for eight months for Kyle to attend this school. Despite their requests for the school to continue to work on decreasing self stimulation behaviors, the school refused to honor their request, and chose to focus on other behaviors. Kyle ended up loosing all of the growth he had made with the ABA consultant and the self stimulation behavior re-emerged. The Ohrts were also under the assumption that their insurance was going to cover part of the expenses for Kyle to attend “Project Best”, and in the end Blue Cross would not cover a penny.
Over the years the Ohrts have investedover $250,000 to pay for in-home and center-based treatment for Kyle, and have been left dissatisfied with the outcome of most of the services. Because Kyle is child with extremely low functioning autism, his slow and stagnant growth has been extremely difficult for the Ohrts to come to grips with. They recognize that Kyle is eventually going to end up in a home due to the fact that he needs supervision and care 24/7. They worry about first getting him into a home and secondly being able to pay for it.
Daily Routines/Challenges/Priorities:
When Kyle is home, Patty and Tom’s schedule and routine is centered around his needs at every moment. He can wake up anytime between 5:00-9:30 am. They have an agreement with the school that it is in Kyle’s best interest to let him sleep until he wakes up on his own. As a result, there are a couple days a week that Patty takes him into school late. After Kyle gets up Patty helps him get dressed. He can put on his shirt and pants if they are laid out correctly for him, but she has to help him with socks and shoes. Patty prepares the same breakfast for Kyle each weekend: pancakes or French toast. After breakfast, they get in to car to go to school. When Patty drops off Kyle around 8:45 am, a paraprofessional meets her at the car, and she fills them in on how Kyle’s morning has gone so far. On Mondays, Wednesdays, and Thursday, Patty picks up Kyle from school.
Kyle’s afternoon routine (after therapy or school) starts out at home. Since Kyle does not play with toys or watch TV, he walks around the house/backyard, jumps on the trampoline, and swings on his swing in the basement. The house has secure locks on all of the outside doors and the backyard is fenced in. Kyle roams independently until he gets bored or wants someone’s attention, at which point he throws a tantrum to indicate that he wants to leave the house or play with someone. Every one to two hours Kyle needs a chance of environments. He grabs his coat to indicate that he is ready to leave, and most of the time Patty drops what she is doing to take Kyle somewhere. Patty takes Kyle to her parent’s house, the grocery store, parks, or restaurants. She said that going out in public is always an adventure as Kyle demands close supervision all the time.
Patty, Tom, and Kyle eat dinner together every night around 6:30, and shortly after dinner, Patty helps Kyle with his shower and they start getting ready for bed. Kyle loves to play in the shower, but needs assistance washing his hair and body and drying off. He takes sleeping medication an hour before he goes to sleep and typically goes up to bed around 8:30. Patty and Tom lock him in his room so that he can’t escape. They also make sure that there is minimal furniture in his room, as he tends to destroy things when he is in his room alone. Some nights he doesn’t go to bed until11:00pm, and he has to go downstairs to jump on his trampoline to burn off some energy before he is tired. Tom and Patty’s time alone does not begin until Kyle falls asleep each night.
Patty and Tom care for Kyle during almost all of the weekend. A student therapist comes into their home to work with Kyle for 2-3 hours on Saturday mornings and they get a break when he is in Sunday school at church. The weekend routine is very similar to the weekday routine, but Kyle simply has more time to hang out at the house and they go in several day-time excursions to give him a chance of environment.
The Ohrt’s are in the process of building a newhouse and they have intentionally built it around Kyle’s needs. They have included a master control light switch outside Kyle’s door in the hallway, a strong lock on his door, and a valve on main level to turn off the water supply in the bathroom attached to his room. There is also a metal fence in the front yard to serve as a barrier in case he escapes out the front door. The Ohrts know that with these preventative measures in place, it will save them a lot of stress. They are well adapted to their routine with Kyle, but admit that it is arather restricting routine.