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New Diagnosis
Getting the diagnosis of Rett syndrome is difficult, but there are many people who are willing to help you, beginning with IRSF. Here are a few places to start. Regional Representative Program The Regional Rep Program has been established to provide emotional support, information and resources to families affected by Rett syndrome. It has become an integral part of IRSF. The program has greatly expanded over the past year, appointing approximately twenty-five new Regional Reps throughout the country. Living with Rett syndrome Here you'll find information on searching for great caregivers, daily tips and how-to advice, help for the caregiver, and entering adulthood. At School and Day Programs The goal in selecting the right educational or day program setting for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child's own special needs and personality. Communication Remember that she has not lost the will to speak and act, just the way to speak and act. Adaptive Equipment and Devices The initial evaluation is very important in determining what kind of equipment to choose. It should be done by your child’s local physician, physical or occupational therapist, or a local medical center, who may consult with vendors (equipment supply stores) to find the right piece of equipment for your daughter. Assistance Programs The cost of health care has skyrocketed to crisis dimensions in recent years, and paying for health care is an additional burden to families of children with special needs. Grandparents Network http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=607&Itemid=1022 Welcome to the Grandparent Network at IRSF. Grandparents are such special people to begin with. However, a grandparent to a Rett Angel is even more special. These children (and your children) love you and need you. Even if you are not closeby in proximity, you can be in spirit by showing your love, care and concern. This network will strive to help you understand Rett syndrome better as well as how you can help your children cope with their diagnosed child. Dads Network Welcome to the Dads Network at IRSF. Dads are such special people to begin with. However, a dad to a Rett Angel is even more special. Your child loves you and needs you. This network will strive to help you understand Rett syndrome better as you cope with your diagnosed child. Parents of Males Network Welcome to the Parents of Males with a MECP2 Mutation Network. Parents and Individuals who care for males with Rett syndrome or a MECP2 mutation oftentimes feel isolated…you are no longer alone. This network will provide you with the ability to communicate with others experiencing the same issues you are, allow you to form special relationships with other parents and caregivers, and most importantly will provide you with the much needed information you have been looking for. International RTT Associations and Foundations Links to Rett syndrome web sites around the world. |
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