Our son Robb is a cheerful 16-year-old who surprised us with an arrival on New Year’s Eve 1999 and a diagnosis of Down syndrome. Barely weeks after his birth, we began to explore ways to support his growth and development, and he appeared motivated and eager to learn, even in those early years.
When Robb was 3 years old, he developed autism, and his love of reading, talking, and drawing disappeared right before our eyes. These days Robb needs constant safeguarding and supervision. He is non-verbal, completely dependent, and has self-injurious behaviors that have only increased with age. He is dangerously uncooperative in public and potentially deadly places like parking lots and roads. Although playful, Robb also acts in harmful ways out of frustration or to seek attention. He breaks dishes, pushes over furniture, and pulls frames off walls. Refrigerators and cabinets all must be locked or tied so that Robb will not break things or put inappropriate and unsafe objects in his mouth, including phones, electrical cords, as well as food to which he is allergic. He turns stove knobs on, pulls objects off shelves, and turns shower knobs to hot, with no awareness of the danger to himself or others. Robb is not a fan of clothes (or taking them off and on), reading, arts and crafts, writing, or arithmetic. Robb loves music, especially bluegrass and the Wiggles, and he adores roller coasters, swimming, and jumping (on trampolines and off waterfalls). Today, our hopes and dreams for Robb are complicated.
After more than a year of waiting, thanks to funding provided by the legislature in FY 16 for those on the Crisis Resolution Waiting List, we finally have support to keep Robb safe AND concentrate on furthering his independence and skills. With the help of this funding, we can work in high gear to strengthen Robb’s self-management and communication, and encourage his maturity into an independent young man who can contribute to society with dignity. With supports in place for Robb—and his own enthusiasm and determination–we can’t wait to see his success.
– Robb and Siri Lise Doub
Support individuals with developmental disabilities & their families in crisis!
SB 413 – Developmental Disabilities Administration – Crisis Resolution Funding will provide relief.