History of NADS
The Origins of the Term Down Syndrome
In 1866 British physician, John Langdon Down, for whom the syndrome is now named, first described Down syndrome, as “Mongolism.” The term Down syndrome didn’t become the accepted term until the early 1970s. More was learned about the condition in 1959 when French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome—just one year before NADS was founded. Shortly thereafter, chromosome studies were developed to confirm the diagnosis of Down syndrome.
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. This resulted in great human sacrifice for those individuals and for their families, who were convinced, often by members of the medical community, that the child was less than human and that their needs would be so great, their families would not be able to raise them. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives.
This was the climate that the founders of the National Association for Down Syndrome had to deal with when their children were born in 1960.
The Early Days of NADS
The National Association for Down Syndrome (NADS) is the oldest organization in the United States serving children and adults with Down syndrome and their families. It was founded in Chicago in 1960 by Kay McGee shortly after her daughter Tricia was born with Down syndrome. In those days the standard operating procedure in hospitals was for physicians to advise parents to institutionalize their newborn infants with Down syndrome. Parents who did not follow this advice took their babies home without support or services. Kay and Marty McGee chose to ignore the advice of their pediatrician and they took Tricia home. After the initial shock of learning that their baby had Down syndrome, Kay, with the support of Marty, began to reach out to professionals and other parents of children with Down syndrome, and that was the beginning of an organization that would always recognize the great value of individuals with Down syndrome and of parents helping parents.
In the sixties and early seventies, the condition was not known as Down syndrome but “Mongolism,” and the original name of the organization was Mongoloid Development Council (MDC). With the help of a few other parents, Kay formed an informal board, and for many years their meetings were held in the home of Kay and Marty McGee. Kay ultimately became the Executive Secretary, and she was the driving force behind the organization from 1960 to 1975. (Kay actually completely filled the role of president, but in 1960, women were not usually seen as presidents of organizations.) In addition to the day-to-day running of the organization—handling all phone calls in her home, doing the clerical work and information flyers (keep in mind that NADS didn’t begin using computers until 1989)—Kay organized regular meetings for parents in downtown Chicago, bringing in speakers from as far away as Germany. All the Down syndrome conferences in the 1960’s and early 1970’s were held in the Chicago area. Kay and the other parent founders of NADS were truly pioneers as they developed support systems for each other and especially for new parents.
In the 1960’s there were no mandated programs or services for children with special needs, so many parents started programs in church basements and in other community buildings. Many of the private agencies that currently serve adults with developmental disabilities throughout the Chicago area were started in this way. They not only built a strong foundation for our organization, but they also fought vigorously for early intervention and education services locally and nationally. We will be forever indebted to those courageous parents.
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. (Molloy School in Morton Grove was named for her.) Another professional who was very active was Delilah White, a psychologist at the Levinson Institute. And later Dr. George Smith, a physician, author and researcher, also worked closely with NADS. So, from the beginning, even though the organization was mainly "parent driven," we have always had professionals actively involved on our board of directors and on our committees. In addition many fine professionals throughout the years have given of their time and talent by giving informative presentations at our conferences, annual meetings and at our behavior retreats. They have also worked with our children and adults on many levels, and they have added valuable dimensions to our organization.