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RICHARD DE LONE
When Richie was born in January of 1998 he was 6 weeks premature. All during the pregnancy he barely moved in the womb, and at first even the OBGYN didn’t think that his Mom was pregnant. As he was coming through the birth canal, his stats started to drop dangerously, and he was rushed out by vacuum. He was not breathing on his own. After a couple of days, our pediatrician told us that something was not right, and that they would have to do some tests to determine what was going on. They took so much blood that the little guy had to have a transfusion! After two weeks the doctor called us to the hospital, told us to sit down, and explained that our beautiful baby boy had Prader-Willi Syndrome. We were devastated. Richie remained in the neonatal Intensive Care Unit for 6 weeks, until he developed the strength to breathe on his own. Finally, we brought him home, a very beautiful but very weak baby with two grieving parents and a confused six-year-old sister. He still had wires attached to a monitor in case he stopped breathing, and a tube in his stomach through which we had to feed him.
Richie reached his early milestones in standard Prader-Willi time (about half speed), but, although he was sweet and engaging and seemingly alert, it soon became apparent that his road was rife with hazards and pitfalls. At 3 years old, Richie started his long career of schooling, which will continue until he is 22. He was officially diagnosed by the school psychiatrist as mentally retarded. Although this meant that he would get government assistance for the rest of his life, we soon found out that, as far as the school and regional center administration were concerned, he would basically be ignored! We began the long and difficult process of IEPs (Individualized Education Planning), meeting with teachers and administrators to try to get the help that Richie needed, but were consistently turned down, even to the point of not getting what had been officially agreed upon in the IEP. It was not until he entered a Special Ed class in elementary school that we finally found an ally in his wonderful teacher, and were able to take a break from fighting the system.
The years have not been easy for Richie. At 14 he is still in diapers, very developmentally delayed, with quite limited communication skills and extreme behavioral meltdowns. As parents we have progressed in learning how to advocate for our son, whom we love dearly, and we are eternally grateful for all the kind and wonderful people who have helped us along the way — the Prader-Willi support group, the wonderful teachers at Cypress school in Petaluma, the staff at the group home where he resides during the week, his sister Caroline, our amazing friends and neighbors, the board members and advisory board of The Richard de Lone Special Housing Project, our outstanding friends in the music community, and the manufacturers of our beloved, giant washing machine.
Even though he does not communicate verbally, Richie is loving, sweet, curious, mischievous, funny, a surprisingly good judge of character, and pretty dang sharp, especially when it comes to iPhones and iPads. Despite all his difficult issues and behaviors, Richie brings us great joy, with a smile that shines like a thousand suns and a sweetness that cannot be denied. Thanks to Richie, we have been introduced to the wonderful men and women, boys and girls who live with Special Needs, and the amazing people who love and care for them. It is this that drives our desire to create a state-of-the-art residential community for adults and children with Prader-Willi syndrome, so that they can live their lives to the fullest in a safe and nurturing environment.
Whitman was born to parents Kevin and Michelle in San Francisco’s Kaiser Hospital in June of 1990. His birth followed a common pattern for babies with Prader-Willi syndrome – failure to thrive, a stint in the neonatal intensive care unit, and finally discharge to home care and early intervention programs. The actual diagnosis of PWS did not come until Whitman was five months old, based upon chromosomal testing. Whitman was delayed in all his major developmental milestones, though he did reach them eventually. It is amusing now to remember how hard his speech therapists worked to get him to speak, speak up, and articulate; now, of course, he can chat for hours on favorite topics seemingly without pausing for breath!
School years were challenging as Whitman tried his best to live up to the expectations of public school classrooms in a full inclusion model with a full time 1:1 aide. By high school it made more sense for him to move into a special education environment where he could not only receive the behavioral supports he needed to focus on his educational goals, but also his innate sense of fairness was satisfied because all students in the school had behavior goals and plans, not just him. While Whitman does struggle with intellectual and learning disabilities, he was also able to pass the California high school exit exam and earn his diploma.
As a young adult, Whitman spends his time divided between an art program for adults with developmental disabilities called Creativity Explored (www.creativityexplored.org) and our local community college, City College of San Francisco. He has a full-time personal assistant at college to ensure that he is safe, keeps to his calorie-restricted daily diet, and maintains the positive behaviors expected of college age students. He has completed his math requirements to transfer to the state university system and is working on the English requirements. Check out Whitman at work here »
Daily life requires a great deal of support for Whitman and ongoing supervision to maintain food security. Daily medications must be supervised, nightly injections monitored, and food carefully planned with no access to food outside of the approved daily menu. The kitchen in Whitman’s house has locked cabinets and refrigerator; regular weekly weigh-ins can reveal outside access to unauthorized food. Currently living at home with his parents, there just aren’t many living options in San Francisco or the Bay Area that can provide the safety and security he requires. His parents worry about what will happen when they are gone, and would like to see him settled in a secure and caring living environment long before they pass away, so that their passing is “only” a loss of his parents and not also a loss of his home.
Given the limited housing options for people with disabilities in general, which are even more limited for people with Prader-Willi syndrome and its unique requirements for food security and behavioral challenges, Whitman and his family are excited by the possibilities presented by the Richard de Lone Center for Living. To have a safe and loving home where PWS is understood and its unique characteristics accommodated with current best practice would be a wonderful gift to Whitman and his family, indeed for all Californians with PWS and their families.
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.