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Media Relations

Tools to help parents of children with developmental disabilities share information with caregivers

For parents of typical children, leaving the babysitter with a list of emergency contacts and a basic bedtime routine may be sufficient. But for parents of children with autism or other developmental disorders, there's a great deal more information to convey, said Beverly Vicker, a speech pathologist with the Indiana Resource Center for Autism at Indiana University's Indiana Institute on Disability and Community.

In her new book, Sharing Information About Your Child with Autism Spectrum Disorder (Autism Asperger Publishing Company, 2007), she guides parents through the process of assembling information about their child's unique behavioral patterns, sensitivities and communication issues. "The thought of preparing a notebook for respite caregivers may be as appealing as preparing one's income tax returns. Both are necessary documents to construct, however," she said.

In the book, Vicker provides worksheets, topical information handouts, examples of completed notebooks from two families, and an accompanying CD. Although it is directed to parents of children with autism, both the book and her tips below can be useful for parents of children or adults with other disabilities.

• Search out trustworthy caregivers. Government and public agencies can provide information about respite caregivers, usually through a Bureau of Developmental Disabilities or similar office. Teachers and friends familiar with respite services can also be good sources for references. Vicker recommends the book, A "Stranger" Among Us: Hiring In-Home Support for a Child with Autism Spectrum Disorder or Other Neurological Differences by Lisa Lieberman as an excellent resource for the hiring process.
• Put yourself in their shoes. "The guiding directive for the entire endeavor of providing information for respite workers is to project yourself into the role of the respite worker," she said. "What would you want to know in order to feel comfortable and confident to handle routine situations as well as the unexpected ones that might occur in your household?" Putting this information in writing will reduce anxiety for both parents and care providers.
• Err on the side of over-preparing. Although excessively detailed information may overwhelm care givers in some situations, it is generally better to have written information on hand than to assume care providers have all the necessary background knowledge. "One cannot assume that the care giver will remember all spoken instructions, particularly as a crisis arises," Vicker said.
• Think ahead. Prepare your materials before the first day of respite services. "This way you are less likely to forget or overlook important information," Vicker said.

Vicker's book can be ordered online at http://www.asperger.net/bookstore_9983.htm.

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