The Family Behavior Retreat was usually held in the spring of each year. During the Retreat, children were cared for by experienced respite workers and spent the weekend engaged in fun activities, such as swimming and music therapy, while parents focused on learning new ways to help their child.
We kept the numbers small so that we could provide a nurturing environment for families. The Retreat was offered as a way for families who were under a great deal of stress to have a respite from the demands of their daily lives. For the children we ensured a one-on-one ratio of respite workers to children in order to ensure that the children could safely enjoy the activities planned for them.
For parents, we provided a variety of experienced professionals who addressed issues of concern to them and who gave them practical strategies for coping with the communication and behavioral challenges of their child.
Many wonderful professionals were very helpful and generous with their time — two who came back year after year were Dr. Lou Weiss and Dr. Michael Feld. We also brought families together who might not otherwise have had a chance to meet; the retreat made it possible for them to share their stories and find support and encouragement from each other. In recent years, the format of the retreat has changed to one-day programs held more frequently to enable more families to participate.
Even though NADS had been training Spanish-speaking support volunteers for many years and some of our materials, including our booklet for new parents, A Baby First , were available in Spanish , we realized that the needs in the Hispanic community were not being adequately met, and in , we hired a Bi-lingual Coordinator to help us better serve these families.
We developed the following programs to help us address their needs:. In NADS developed a pilot program to help improve and expand our services to Spanish speaking families in the Chicago metropolitan area. This pilot program was then incorporated into our regular services when our Bi-lingual Coordinator became a member of our staff.
She now works closely with new parents, and she also provides educational advocacy. Our booklet A Baby First has been published in Spanish for many years and our brochures are also available in Spanish.
In addition to training bi-lingual support volunteers for many years we have conducted training sessions for those who only speak Spanish, and they are available to work with our new families. NADS conferences have also included workshops in Spanish, and we provided translation services for the general sessions. In the s and s, we invited many researchers to speak at our conferences. They reported on medical, cognitive and educational research projects not only from the U.
From the s the issue of treating children with Down syndrome with mega vitamins was a topic of interest to parents of children with Down syndrome. Henry H. Terkel, developed a mixture of vitamins and minerals, which became known as the U-series.
By the s Terkel was focusing mostly on Down syndrome. Many parents were anxious to do anything that might help their child, and so they put their children on Dr. In Dr. Ruth Harrell and colleagues at Old Dominion University in Virginia published a report that made everyone sit up and take notice. This was a small study with only 16 participants. Harrell reported that some children with Down syndrome who had been given mega doses of vitamins and minerals had increased IQ scores as high as 25 points in one case.
George F. Carol P. George Smith and his team to put this important study together. We recruited children to participate in the study, which was conducted at Illinois Masonic Hospital in Chicago.
In addition, NADS provided some funding for this study. The purpose of the study was to evaluate the effects of mega doses of vitamins and minerals on the cognitive intelligence of children with Down syndrome. There were a total of 56 children and they were separated into 2 groups with 28 children in each group. The average age in each group at the beginning of the study was 11 years.
This was an 8-month study, and children were evaluated at baseline, 4 months and 8 months with psychological tests, physical exams and blood tests. The results showed that both groups of children made improvement over the 8-month period, but no difference were found between those children taking the megavitamins and those taking placebos. A complete report on this study was published in The Journal of Pediatrics, Vol.
In the late s NADS was concerned about many of our children not having appropriate heart screening at birth. At that time, Dr. Roizen and Dr. Deborah Bryk-Serva, Pediatric Cardiologist, developed a research project to look at this issue. Participants were at least 3 months of age and had not been screened for heart disease with an echocardiogram.
Each child in the study had a comprehensive physical exam as well as a cardiac evaluation, including an echocardiogram. The results of this study clearly documented the need for all infants with Down syndrome to be evaluated by a Pediatric Cardiologist and an echocardiogram at birth or shortly thereafter — this is now clearly recommended in the Down Syndrome Health Care Guidelines.
Since very little research had been done on adults with Down syndrome, we provided funding to the Center to offer cardiac screenings for patients at the Center before they were allowed to participate in the aerobics program.
This involved an evaluation by a cardiologist, a stress test and other cardiac assessments. No major cardiac problems were found in this study. This study was undertaken to examine the relationship between energy expenditure and obesity in children with Down syndrome in comparison with control subjects, and to provide data to help define daily energy requirements of prepubescent children with Down syndrome.
NADS recruited children with Down syndrome, and a control group was recruited from another source. A complete report on this study was published in the Journal of Pediatrics , Volume , Issue 5, Part 1, November The materials were available for loan to NADS members, patients of the Adult Down Syndrome Center and their families or caregivers, but due to space constraints and administrative challenges, NADS made the decision to discontinue the lending service, and the materials from the library are currently being distributed to local communities.
Because there was so much inaccurate information about Down syndrome throughout the years, NADS has produced materials to correct these inaccuracies and myths. Our materials highlight the value, gifts and contributions that children and adults with Down syndrome bring to their families and to the broader community.
It was the first 4-color booklet published in the U. S on Down syndrome. It provides general information about Down syndrome as well as listings of NADS programs and numerous Down syndrome resources. The website was redesigned in by Kurt Metzler who has continued to be our webmaster since then.
Parents often helped each other by addressing questions or by posting useful resources they had discovered. Initially this forum met a significant need and generated a lot of energy, and while it is still used by some people, with the development of the Blogosphere and Facebook, more and more parents are communicating more directly with a variety of people.
Other social networking sites allow parents to share information much more easily than was possible in the past. NADS is also on Facebook, which is another way that we are helping to keep people connected and up-to-date.
The website continues to be a great vehicle for NADS to communicate with our members and the broader community on a variety of issues and events. In NADS started a list serve e-mail alert system and members were notified of legislative alerts and events of interest to the Down syndrome community.
Peggy was in our first training program for Parent Support Volunteers and she served on the board of directors until when she joined the NADS staff as our Office Coordinator. In that capacity she expanded our Hospital Education Program and she provided hundreds and hundreds of hospital in-service programs throughout the Chicago metropolitan area.
Linda also worked with college, high school and elementary school students — providing them with valuable information and insights. Linda also provided wonderfully sensitive support to many parents throughout the years.
Linda worked with much dedication for NADS until the summer of and we were devastated when she died in December History of NADS. Historical Climate During the first half of the twentieth century in the United States, the majority of children with Down syndrome were placed in institutions — frequently soon after birth. Parents and Professionals Working Together From the beginning, NADS parents worked closely with professionals — people such as Julia Molloy, a wonderful speech therapist who was a great source of information, encouragement and strength for our parents.
Building a Strong Organization Name Change Even though MDC primarily served the Chicago metropolitan area, the organization received requests for information from all over the country. Development of Parent Support Program Even though things were improving in the area of education see Special Education for Children with Disabilities below , NADS leaders were still concerned that many new parents throughout the Chicago metropolitan area were not receiving the kind of medical care and support they so desperately needed when their baby was born with Down syndrome.
Temporary Foster Care In a very important aspect of our support to new parents was our temporary foster care program. Hospital Education Programs Even though NADS had trained support volunteers willing to assist new parents, we were still faced with the challenge of obtaining regular referrals of all new parents in the Chicago metropolitan area.
The primary goals of our Hospital Education Programs were and still are: Provide physicians, residents, nurses and social workers with up-to-date information on Down syndrome and prepare them to give sensitive care and support to parents of newly diagnosed infants with Down syndrome.
This is accomplished through our in-services, which are conducted in hospitals or in the offices of physicians. Maintain up-to-date materials for medical professionals. Develop effective referral systems in the medical community to ensure that new parents are directly referred to our Parent Support Program whenever possible.
Education Special Education for Children with Disabilities After many years of hard work by parents and other advocates, education for all children with disabilities became a federal law. Parent-to-Parent Program For many years NADS has provided support and information to families who call on us for assistance with school issues. Education Programs for Students NADS staff and trained public speakers have provided education programs in schools for students in elementary, junior high, high school and college.
Work Experience Program During the s and early in the s, individuals with Down syndrome were graduating from High School or from special education programs with no job skills and with very few options after graduation. The goals of this program are to provide support to adults with Down syndrome who fall into the following categories: Young adults who are out of school and living at home. Diagnostic tests can typically detect whether or not a baby will have Down syndrome, but they can be more risky for the mother and developing baby.
Neither screening nor diagnostic tests can predict the full impact of Down syndrome on a baby; no one can predict this. Extra fluid in this region could indicate a genetic problem.
Rarely, screening tests can give an abnormal result even when there is nothing wrong with the baby. Sometimes, the test results are normal and yet they miss a problem that does exist.
Diagnostic tests are usually performed after a positive screening test in order to confirm a Down syndrome diagnosis. Types of diagnostic tests include:.
Many people with Down syndrome have the common facial features and no other major birth defects. However, some people with Down syndrome might have one or more major birth defects or other medical problems. Some of the more common health problems among children with Down syndrome are listed below. Down syndrome is a lifelong condition. Services early in life will often help babies and children with Down syndrome to improve their physical and intellectual abilities.
Most of these services focus on helping children with Down syndrome develop to their full potential. Translocation happens when a piece of chromosome 21 becomes attached to another chromosome during cell division. In the case of hereditary Translocation Down syndrome a rare one to two percent of all people with Down syndrome , an extra chromosome 21 is inherited from one of the parents.
Surprisingly, The population of people in the US with Down syndrome is currently unknown. What we do know is:. Today the average lifespan of a person with Down syndrome is approximately 60 years. Most children with DS function in the mild to moderate range of cognitive impairment. People with Down syndrome have physical and intellectual delays from birth but there is a wide variety of abilities within the population that are impossible to predict ahead of time.
By law, people with Down syndrome in the U. A small but growing number of people with Down syndrome are choosing to get married and live together. There is also evidence of an increased risk of celiac disease, autism, childhood leukemia and seizures.
It is rare for a person with Down syndrome to have a solid tumor cancer or cardiovascular disease, including heart attack and stroke.
Although children and adults with Down syndrome may share some common features, they look more like their immediate family members than like each other. Appropriate medical care for children and adults with Down syndrome is very important. Early intervention for babies with Down syndrome is very important. It is understandable that parents are concerned about how a child with Down syndrome will affect their family, including siblings.
Every family is unique and may deal with the idea of, or the birth of, a baby with Down syndrome differently. Despite potential challenges, personal accounts and studies show that many families that have a child with Down syndrome are stable, successful and happy, and that siblings often have increased tolerance, compassion and awareness. In fact, a major study on marriages and Down syndrome shows the divorce rate among parents of children with Down syndrome is lower than the national average.
Global Down Syndrome Foundation together with the National Down Syndrome Congress have created a pamphlet for pregnant women that addresses questions related to prenatal testing for Down syndrome. Please click here to access or download the free pamphlet.
Of course, there is no way to know what the future holds for anyone. In most ways, however, babies, children and adults with Down syndrome are more like other people than not.
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