Search

Children and adolescents with PWS can achieve many successes in school and community-related activities. When educators understand each child as an individual with special strengths and needs, they then can determine how the attributes of PWS can contribute to successes and can assist families, school staff, and ultimately, the children themselves to cope with the challenges associated with the presence of this syndrome and maximize their functioning, independence, and happiness. [ABSTRACT FROM AUTHOR]

Providing a quality life for a person with PWS has layers of complexity and ethical issues that are not easily resolved. The rights and responsibilities regarding sexuality will continue to require a combination of an open mind, common sense, and ongoing dialogue among parents, caregivers, and most importantly, the person with Prader-Willi syndrome. Perhaps the primary question remains: Who has the right to make these decisions? As with the general population, when considering the issue of sexuality for those with PWS, every parent, every caregiving agency, every ruling judge, and indeed, every culture and every involved person has a different opinion regarding what is fair and appropriate and correct. Ultimately the decision must hinge on "what is best" for the person with PWS. And, just as often, what is best may not be what is "wanted" by that person or easiest for those providing care. This chapter has dealt briefly with several dimensions of the sexuality issue: the need to recognize the facts and fictions surrounding our beliefs about sexuality and people with PWS; the increased risk for abuse associated with those with disabilities; and the complexity and challenges of supporting individuals with PWS in fulfillment of their hopes, dreams, and wishes. There are many ethical and legal questions surrounding the issue of healthy sexuality and sexual expression for those with PWS. Where care is shared between families and providers, both parties must come together with the individual to determine what makes sense for that person at a particular point in time. There are no easy or right or wrong answers-no simplifying blacks or whites—just shifting shades of gray. [ABSTRACT FROM AUTHOR]

When a child has PWS, in addition to the usual parenting concerns, the family faces a number of additional and often emotionally difficult issues requiring special information and services. The social worker is in a unique position to aid and support the family as they face the challenges and joys of parenting this child. Targeted social service intervention by the social worker can (1) help the family reestablish a working balance, while (2) providing education and guidance, and (3) providing support in obtaining and coordinating multiple medical and early intervention services for the affected child. [ABSTRACT FROM AUTHOR]

Many people with Prader-Willi syndrome will face significant challenges and difficult decisions throughout their entire lives. Deciding on the appropriateness and type of residential supports is one of the most important considerations facing any person with the syndrome and their family. Guidance from family and significant others, national research of the options available, and seeking answers to probing questions will greatly assist with making the best possible decision. Successful residential programs, equipped to manage and support the unique needs of individuals with Prader-Willi syndrome, have continued to be developed over the past two decades. It will be through the relentless efforts of both parents and professionals that all people who desire a residential program will have a safe home in which to learn and achieve a quality of life. [ABSTRACT FROM AUTHOR]

Progress in the field of vocational services remains behind progress aiachieved in medical, behavioral, and residential supports for people with Prader-Willi syndrome. The reason for this lag is obvious: arranging these environments for success is far more difficult, as their very nature lessens the capacity for controlling critical components. In sheltered workshops there is not always consistency in the ownership/management between residential and vocational service providers. Typically, supported employment requires placing adults in someone else's business whose good intentions may be eroded by behavior that adversely affects business. Nonetheless, progress has been achieved, and that progress can be directly attributable to successfully structuring the environment through staff training, physical modifications, and programmatic procedures. The "final frontier" is definitely upon us. [ABSTRACT FROM AUTHOR]

In short, early planning along with a great deal of networking and creativity is required on behalf of adolescents with PWS. Schools must provide relevant programs to prepare these students for an entirely new set of challenges. Parents must continue to work collaboratively with educators while they advocate for their sons and daughters. Indeed, the adult service system is generally not as "user friendly" as the educational system and requires continued diligence in securing needed services and programs. [ABSTRACT FROM AUTHOR]

Since 1956, when Swiss physicians Prader, Labhart, and Willi first described Prader-Willi syndrome, much has improved for affected children and adults. An increasing knowledge base and exciting treatment options, such as growth hormone, offer increased optimism for quality of life. At all stages of development, and throughout the life span of the person with Prader-Willi syndrome, motor intervention and activity modalities provide the tools for dealing with the challenges of hypotonia, developmental delays, balance deficits, orthopedic anomalies, and obesity. From the infant, who has perhaps not yet even been diagnosed, to the adult seeking meaningful work through vocational training, every individual with Prader-Willi syndrome should have care that includes physical, occupational, and speech therapists as essential team members. [ABSTRACT FROM AUTHOR]