新的书帮助兄弟姐妹们的唐氏综合症导航问题的关注和恐惧

基于成千上万的对话，平装铲球十几岁的兄弟姐妹带来大问题

2009年2月26日

波士顿，大众。——兄弟姐妹们唐氏综合症will have to face questions about the genetic condition throughout their lives, ranging from "What causes 唐氏综合症?" to "Why do people stare at my sister in public?" "How do you deal with people who use the word 'retard'?" 和 "Where will my brother live when he gets older?" A new book,系好你的安全带：对兄弟姐妹的唐氏综合征的速成课程（英国的房子, February 2009), tackles these 和 dozens more top medical 和 personal questions about 唐氏综合症 in an easy-to-underst和, fast-paced, question-和-answer format。

面向青少年，虽然可以访问的兄弟姐妹，11岁，在这本书的问题是由其共同作者领导的兄弟和姐妹讲习班的基础上布瑞恩Skotko，MD，MPP，一位内科医生波士顿儿童医院whose sister has 唐氏综合症, 和 Susan Levine, a social worker with Family Resource Associates, Inc。 （Shrewsbury, NJ)。 For the past ten years, Skotko 和 Levine have conducted workshops for brothers 和 sisters of people with 唐氏综合症 和 in their combined 34 years experience have met more than 3,300 siblings。

"Over the years, support networks 和 resources have been developed for parents of children with 唐氏综合症, but what is often overlooked is that siblings need access to information 和 support structures, too," said Skotko。 "Oftentimes, siblings exist in emotional isolation - they have so many questions about 唐氏综合症 和 the feelings they are experiencing toward their brother or sister。 They frequently wonder whether it's okay to feel not only love 和 joy toward their sibling but also frustration 和 embarrassment, at times。"

作为工作室的一部分，Skotko和Levine问兄弟姐妹写在索引卡上-一个燃烧的问题他们不匿名提问坦然问父母或组。收集后，卡片是随机抽取的，从一个盒子里的问题是共享和回答的基础上，作者的专业和个人经验。

"What we've learned from the index card exercise is that by voicing teens' emotions - their excitements, questions 和 frustrations with their siblings with 唐氏综合症 - invariably there are 'ah ha!' moments when they look at each other 和 say, 'Your brother/sister does that, too?'" Levine commented。

“一旦他们有了一个声音的方式，看到他们的经历是由别人分享的，他们的情感会被验证，他们正在经历的经历是标准化的。在这我们看到一种舒适感，认同和感激，”Skotko说。”与出版系好你的安全带，我们希望与更多的兄弟姐妹们分享我们的反馈，帮助他们找到他们现在的问题的答案，或者他们正开始制定的问题。”

Skotko, a resident physician at Children's, has dedicated his professional career 和 research to children with cognitive 和 development disabilities 和 their families。 His research focuses on how physicians deliver a diagnosis of 唐氏综合症 to new 和 expectant parents, pre- 和 postnatal support, 和 what it's like for families to have a child/brother/sister with 唐氏综合症。

系好你的安全带is a compilation of the most common questions posed over the years to Skotko 和 Levine。 Written for teens, it is a resource that children 和 adults of all ages will find useful as they navigate their relationships with people with 唐氏综合症。 The book will be available on the亚马逊和Barnes 和 NobleWeb sites 和 in select Barnes & Noble stores in mid-March。

接触：
克里斯特德曼
617-919-3110
keri。stedman@childrens。harvard。edu

波士顿儿童医院 is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children 和 adults since 1869。 More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine 和 13 members of the Howard Hughes Medical Institute comprise Children's research community。 Founded as a 20-bed hospital for children, 波士顿儿童医院 today is a 397-bed comprehensive center for pediatric 和 adolescent health care grounded in the values of excellence in patient care 和 sensitivity to the complex needs 和 diversity of children 和 families。 Children's also is the primary pediatric teaching affiliate of Harvard Medical School。 For more information about the hospital 和 its research visit:www。childrenshospital。org\/newsroom。

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