Parents' perceptions of functional abilities in people with Down syndrome.

A realistic assessment of the range of functional abilities found in people with Down syndrome (DS) may assist in counseling expectant parents. This study asked parents from the United States and the Netherlands to assess 11 functional skills of their sons and daughters with DS: walking, eating, speaking, grooming/personal hygiene, reading, writing, preparing meals, working at a job, going on dates, traveling independently, and living independently. We analyzed responses from 2,658 parents who have sons/daughters with DS of all ages. The majority of people with DS in the United States could walk by 25 months of age, speak reasonably well by 12 years, maintain their own personal hygiene by 13 years, and work independently by 20 years. By 31 years of age, 49% were reading reasonably well, and 46% were writing reasonably well. Approximately 30% could travel independently, and 34% were living independently. The results from parents in the Netherlands were similar for most measures. This normative data on function may contribute to anticipatory guidance and decision-making. Furthermore, as parents and clinicians seek to assess the relative strengths and weakness of people with DS, resources and supports can be marshaled for those not meeting milestones at expected times.

Family perspectives about Down syndrome.

National medical organizations recommend that during prenatal counseling sessions, healthcare providers discuss how having a child with Down syndrome (DS) might impact the family unit. Few studies, to date, have surveyed families about their life experiences. For this investigation, we examined 41 family attitudes, which were obtained from mailed questionnaires completed by 1,961 parents/guardians, 761 brothers/sisters, and 283 people with DS who were members of six DS non-profit organizations, chosen for their size, ethnic/racial diversities, and geographic distribution throughout the United States. About 83% of families reported to all being proud of the family member with DS, and 87% reported to all feeling love for the member with DS. Younger siblings (ages 9-11) were more likely to feel embarrassed by their sibling with DS if their parents/guardians also did. If one or more parents/guardians felt that their children without DS did have a good relationship with their child with DS, siblings were more likely to report that they loved and liked their brother/sister with DS. Overall, our data demonstrate that positive themes tend to dominate within modern-day families who have members with DS, although challenges were not insignificant for some.

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¿Qué opinan los protagonistas sobre el síndrome de Down? El artículo presenta amplios resúmenes de trabajos recientemente publicados en Estados Unidos, en los que se han expuesto las opiniones de las personas con síndrome de Down sobre sí mismas y las de sus hermanos. Del mismo modo, ofrece las respuestas vertidas on line por los lectores de la Revista Virtual Canal Down21, en la que su artículo editorial preguntaba: "¿Quitaríais el síndrome de Down a vuestro hijo?". Todo este conjunto de datos, que por primera vez se ofrecen de manera integrada, constituye un testimonio de primera mano para que los profesionales y la sociedad profundicen en la realidad del síndrome de Down, tal como la describen sus principales protagonistas. Son particularmente interesantes las recomendaciones que las personas con síndrome de Down dan a sus padres y a los médicos. Esta es la hora en que los profesionales cuentan ya con opiniones creíbles y actualizadas, ofrecidas por quienes mejor lo han experimentado (AU)

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Having a brother or sister with Down syndrome: perspectives from siblings.

This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling's lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.

Self-perceptions from people with Down syndrome.

This study asks people with Down syndrome (DS), ages 12 and older, about their self-perception so that their information could be shared with new and expectant parents of children with DS. We analyzed valid and reliable survey instruments from 284 people with DS on the mailing lists of 6 non-profit DS organizations around the country. Among those surveyed, nearly 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life. In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.

Having a son or daughter with Down syndrome: perspectives from mothers and fathers.

This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.

What the other children are thinking: brothers and sisters of persons with Down syndrome.

Brothers and sisters are obligatorily welcomed to the disability community when a person with Down syndrome (DS) is part of the family unit. How they react to such an invitation is the focus of this investigation. Here, we review the most current research on brothers and sisters of persons with DS, and comment on our own experience in facilitating sibling workshops at the local, state, and national levels. The evidence, to date, seems clear: brothers and sisters experience a wide range of emotions, but typically the positive feelings outweigh the negative ones. Further, siblings find rich value in having a family member with DS, and most will assume positions of advocacy at some level in their lives. Recommendations for physicians on how parents can nurture healthy relationships among their children are offered.