Julia’s Story
Julia was born in 1985 by a traumatic Caesarian delivery. She was a healthy size of 8lbs 1oz, and to me she was beautiful. After her birth she exhibited weak sucking muscles, and had trouble nursing or taking a bottle, but she was able to go home after spending just a few days under observation.
At 5 months old it was apparent she was not reaching any milestones. She still had trouble holding her head up, and did not reach for toys. At 10 months we hired an occupational therapist to come to the house to see if we could help her reach her age appropriate milestones. Her pediatrician kept telling us she was fine up until her first birthday. He then gave us the information to call the Regional Center. We were assigned a social worker who assisted us in getting Julia into an infant program for the developmental disabled.
At age 3 she began the Early Childhood Education program for developmental delayed. It was during this time we met a child who had Prader-Willi Syndrome and, since Julia was so obsessed with food or the lack of it, we had her tested. She was indeed diagnosed with Prader-Willi Syndrome. At last we could understand what was going on, and we began to get her the help she needed.
She started 1st grade in our neighborhood school with a one-on-one aide. This worked out pretty well til the beginning of 5th grade, when the behaviors around food started to get out of control. At home she would have temper tantrums that lasted for two hour and, worst of all, she began picking on her brother, who is 5 years her junior. It reached the point where we were afraid she might seriously hurt him. After visits with several family counselors we were advised to find an out of home placement for Julia in order to save our family and our son. A place where she would have the proper structure and care to deal with her food seeking and to take care of her unique dietary needs.
Julia moved into her first group home at age 11. It was fine for a while, but never great. The staff was constantly changing shifts, or leaving employment. Some of the staff were wonderful, others a nightmare. Many times I had to stop what I was doing and drive to her group home to pick her up and get her out of the house due to the staff not being properly trained and not being able to redirect Julia. It was so hard for her and for us. She couldn’t live with us, but at the same time it was hard having her live away from us. These group homes were not homes designed for kids with PWS, but they were within driving distance (about 45 minutes w/o traffic). And they always promised that they could take care of her. We brought Julia home on the weekends. We missed her during the week and also knew that the weekends were when the group home was pretty much sedentary – nxo activities for the clients.
When she turned 18 we looked at a few homes designed for young adults with PWS. Some of them did not seem appropriate for Julia, and others were too far away. She moved back in with us for a year, and then lived in and out of group homes and residential psychiatric hospitals until recently. She is now 27 and lives in an apartment with a Supported Living Services caregiver and one on one care. This too has its ups and downs. Due to her food seeking she is not able to hold a job (food is everywhere!), and during the day, if she is not busy, food is on her mind constantly, leading to difficult behaviors.
After learning of the Richard de Lone Center for Living I have high hopes that Julia might be able to live out the rest of her life in a place where she will be happy, where she will be loved for who she is, cared for properly, and be with her peers. She needs the consistent routine and structure that a Prader-Willi community such as the de Lones hope to build can provide. She needs to be kept busy with exercise, games, art projects, and outings. She needs to be surrounded by people who understand how hard it is too be hungry all the time, and who can love her for who she really is — a sweet, loving girl with a terrible condition that is beyond self control.