History of NADS
Meeting the Needs of the Underserved in the Down Syndrome Community
During the late 1990s NADS became aware that some of our children with Down syndrome had additional diagnoses, such as Autism or Attention Deficit Hyperactivity Disorder. After doing some research, we decided to develop a program focusing on the needs of these children and their families, who were feeling very isolated; some even expressed that they didn’t feel welcome in the Down syndrome support system because of their child’s challenging behaviors.
Family Behavior Retreat
Beginning in 1998, NADS provided a weekend retreat for families whose child with Down syndrome had an additional diagnosis, such as Autism or ADHD. 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.
Serving the Hispanic Community
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 2005, 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 2005 NADS developed a pilot program to help improve and expand our services to Spanish speaking families in the Chicago metropolitan area. This was an important step because more than 25% of all new families we served that year were Hispanic, and the number was increasing. 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.