Beach Center on Disability

Transcription

1 BEACH CENTER STORIES Still Together After All These Years: The Bricklins and Autism Aly Barland Edited by Mary-Margaret Simpson When Alexandra and Jonathan s daughter was diagnosed with autism, their lives changed drastically. After 10 exhausting years of trying to cope with their daughter's challenging behaviors, Alexandra placed her daughter in a residential school and she and her husband separated. This was not a satisfying solution. Today the couple is back together, planting the seeds for an independent life for their adult daughter. Beach Center on Disability

2 Rebecca s Story Still Together After All These Years: The Bricklins and Autism This story was written by Aly Barland for a Spring 2007 class, Diversity in the Media, taught by Barbara Barnett, Ph.D., in the School of Journalism at the University of Kansas. Alexandra had a premonition about her daughter. She knew before any official diagnosis that something was wrong. Alexandra told her husband, Jonathan, that if it weren t for the bonding she had with Rebecca, she would think Rebecca had autism. Alexandra believed the ability to form normal social bonds like theirs is uncharacteristic of the developmental disorder. I suspected learning disabilities but then, as time went on, I saw more and more developmental delays. But she was with me a lot and with me, she didn t display those behaviors in the same way, Alexandra said. Alexandra s sister-in-law, a social worker, suggested to the Bricklins that Rebecca be tested for autism because she failed to make emotional or social connections with anyone but Alexandra. Watching and Knowing As Alexandra watched her daughter interact with doctors during testing, she knew that Rebecca had autism because she failed to make eye contact. Alexandra had some experience with autism based on her studies in music therapy. I suspected learning disabilities but then, as time went on, I saw more and more developmental delays. But she was with me a lot and with me, she didn t display those behaviors in the same way, Alexandra said. Alexandra would say that she saw her daughter acting like the videotapes of autistic kids that she saw in her classes for music therapy, Jonathan said. Rebecca, at 2 1/2 years old, was diagnosed with Pervasive Developmental Disorder not otherwise specified (PDD-nos), a type of autism characterized by problems with communication and difficulties with human interaction. Alexandra started Rebecca in therapy immediately after the diagnosis. Alexandra s mother, Rita Steiner, said her daughter realized the importance of early intervention and used physical therapy, speech therapy, and behavioral therapy. When Rebecca was diagnosed in 1987, Alexandra was working on her master s degree in music therapy. After the diagnosis, she was no longer able to pursue a career as a musician. As a child, she was raised to identify herself as a gifted musician, but she was beginning to lose hope of accomplishing that dream. I thought I was going to be a famous composer or performer. I saw myself as a musical genius, Alexandra said. Alexandra felt a sense of loss as she began to devote all of her time to Rebecca.

3 I just dropped everything else in my life, and she became the locus of my every living, waking, dreaming thought and feeling. I did more than I thought 100 percent was. Cracks in her Life Alexandra s intense dedication to her daughter began to cause cracks in the foundations in the rest of her life. When Rebecca was 10, all of Alexandra s frustrations came to a head. Rebecca often has problems with aggression, and teachers told her parents that it took seven of them to hold her down at one point. After seeking medication that made Rebecca more anxious and aggressive, her parents placed Rebecca in a psychiatric hospital for nine days. Her school refused to re-admit her. At the end of her rope, Alexandra put Rebecca in boarding school and left her husband. I was acutely aware that I emotionally no longer had the resources to do what I was doing, Alexandra said. It was a desperate act. Ted Fallon, M.D., a pediatric psychoanalyst, has been treating Rebecca, who is now 22, for four years and helps families cope with disabilities such as autism. He said that many parents face difficult decisions when it comes to the care of their child. For Alexandra, this period was a turning point. She was committed to her child but it was overwhelming. She, in some ways, walked away from Rebecca, as I think some people would think about doing, Ted said. Many parents of autistic children feel hopeless and end up institutionalizing their children instead of trying to care for them at home, he said. Alexandra understood that the best chance Rebecca had was with her biological parents. However, it requires superhuman effort and can destroy a family, Ted said. It almost destroyed the Bricklin family. For two years, Rebecca continued to attend residential schools. Her behavior improved and Alexandra was able to take Rebecca out so that she could become a day student while living at home, which she has done for the last eight years. Jonathan and Alexandra were still separated at this point, but Jonathan said he was committed to making it work. I was madly in love with her still am, he said. A Stronger Commitment Jonathan said that Alexandra needed emotional support that he wasn t providing, so he made a stronger commitment to the family and an effort to actually listen to Alexandra. It was important for her to feel that she was being heard and appreciated. Alexandra s strengthened commitment to her daughter is impressive to Ted. Rebecca is developmentally in the toddler stage, he said, and it is a huge commitment to care for a toddler for 22 years. As most parents do, [Alexandra] has built her life around Rebecca. I don t think that s unusual for parents to do. What s unusual is that she has sustained it, he said. For Alexandra, there was no other option worth considering. You have a choice: Either abandon your vulnerable child to the wolves or you hang in there as long as you can, she said. Rebecca s progress is most likely a result of this dedication. When Ted first met the Bricklins four years ago, Rebecca was aggressive and would hit her mother. Now she rarely does. Ted said that kind of impulse control is tremendous.

4 No Regrets Alexandra had to make sacrifices for Rebecca, but Rita Steiner said she is sure that her daughter does not regret her decisions. Rebecca turned out to be a wonderful young lady due to my daughter, Rita said. As Alexandra looks toward the future, she is somewhat apprehensive. She has worked for the Association of Retarded Children (ARC) of Chester County in Phoenixville, PA, where the Bricklins live, doing advocacy work by researching the problems that adult caregivers face when their children are dependents living at home. Many of the caregivers become emotionally and financially drained and Alexandra is already beginning to feel this in her own life. Parents who take care of the dependent as a full-time job often can t generate a sufficient income nor do they have enough time to develop their own sense of identity. Career development goes out the window, emotional resilience goes out the window, and you are trying to stay in a harmonious relationship with a person that s a pain in the ass to live with, she said. With families in this situation, there are few resources available to the caregivers. Support for parents doesn t exist. All the services are child-centered, Alexandra said. Multiple Jobs To combat the problem of holding a steady job and caring for a daughter with autism, Jonathan works full-time doing data entry while Alexandra works five part-time jobs around Rebecca s schedule. Some of her jobs are teaching cooking and how to disc jockey at Rebecca s school, Camphill-Soltane. She also teaches a parent-child music program and is a church musician. Some families are not as fortunate as the Bricklins. Alexandra said they have support from extended family that has helped them financially and emotionally to cope with Rebecca s disability. I think an autistic child s development is most influenced by the resources of the entire family and community constellation. Free and appropriate educational and therapeutic resources helped but it was our passionate dedication coupled with massive financial backing from Jonathan s whole family that enabled us to pick and choose experiences we felt would offer Rebecca optimal opportunity, she said. Alexandra and Jonathan, both 51, have plans for Rebecca s future as a semi-independent adult. Jonathan said that the goal is to prepare Rebecca enough that Alexandra will no longer have to be the primary caretaker 24 hours a day. One possible scenario that she envisions is Rebecca owning her own house but renting to a roommate who would be a live-in caretaker. What s Best She is focused on what is best for Rebecca as far as setting Rebecca up for the long term, Jonathan said. There are financial obstacles to Alexandra s plans. She says the Bricklins can t afford to own two homes, but they continue to consider all the possible options. Alexandra knows this will be a slow process, but has her eye set on the future and her daughter s potential for independent living, which will, in turn, give her some independence as well.

5 This story does not constitute medical, legal or any other type of professional advice. The Beach Center on Disability website and its stories are provided as a public service. Although the staff at the Beach Center works hard to provide quality information and content on the website, the Beach Center cannot guarantee the accuracy, completeness, timeliness, or suitability of the information in any particular document, on any particular web page, or for any particular purpose. If you believe any information provided in this story is unclear or inaccurate, please inform us by sending comments to [email protected]. In no event shall the Beach Center be liable for any special, indirect, or consequential damages resulting from the use of information provided in this story. Beach Center on Disability The University of Kansas 1200 Sunnyside Avenue, 3136 Haworth Hall Lawrence, Kansas Telephone: TTY: