Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm.  Each person with Down syndrome is a unique individual, however, and may possess these characteristics to different degrees, or not at all.

It is proven that Early Intervention services can greatly help children with disabilities. Early Intervention is a systematic program of therapy, exercises and activities designed to address developmental delays that may be experienced by children with Down syndrome or other disabilities. These services are mandated by a federal law called the Individuals with Disabilities Education Act (IDEA). The law requires that states provide Early Intervention services for all children who qualify, with the goal of enhancing the development of infants and toddlers and helping families understand and meet the needs of their children. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy and occupational therapy.

Down Syndrome Awareness in Wisconsin

The local organization for Down syndrome awareness and advocacy is the Down Syndrome Association of Wisconsin (DSAW).  DSAW has chapters in different communities throughout the state and each chapter, as well as the statewide Board of Directors, work tirelessly to support and advocate for individuals with Down syndrome.  The Public Policy Committee works with legislatures to advocate for people with disabilities.  DSAW proudly has self-advocates, young adults with Down syndrome who are able to share their experiences and knowledge with others as a way to advocate for themselves and peers.  Raising awareness is a priority of DSAW and is evident in the number of programs held statewide throughout the year.  DSAW hosts Awareness Walks in each represented community annually and uses the money raised to support DSAW and its efforts with advocacy and awareness.

Supporting parents and families of a child with Down syndrome is very important.  DSAW offers new parent packs for parents with resources and information.  Many parents receive a pre-natal diagnosis of Down syndrome.  This diagnosis can be difficult to accept.  DSAW is currently focusing its efforts on Medical Outreach and providing doctors and clinics throughout the state with education material for the doctors and staff to read and share with families in the midst of receiving a pre-natal diagnosis.

National Down Syndrome Awareness

The National Down Syndrome Society (NDSS) is a great place to start when researching Early Intervention Services.  NDSS has more than 375 local affiliates throughout the country that provide services to better support the area’s Down syndrome community.  Children and adults with Down syndrome face many obstacles throughout their lives but with the help and support of friends and family and Early Intervention services, nothing is impossible.

Have you had a good experience with local Down syndrome advocacy group?  Please share your story with us.

(National Down Syndrome Society, www.ndss.org, Copyright © 2012 National Down Syndrome Society) The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

Division for Early Childhood of the Council for Exceptional Children
www.dec-sped.org ) One of 17 divisions of the Council for Exceptional Children, this organization supports policies and practices that support families and enhance development in especially young children with disabilities and learning delays.

Down Syndrome Association of Wisconsin, www.dsaw.org.  The vision of the Down Syndrome Association of Wisconsin (DSAW) is that we all understand the value of those with Down syndrome in our lives and our communities.  We continually strive toward full acceptance, full access, full life and full potential.

Amy Bontempo is the Manager of Family and Community Engagement at Penfield Children’s Center.  She supervises the Community Outreach Educator, Volunteer Coordinator,  Parent Mentor Program, and Family Programs of which Penfield host over 60 per year.  She has served on the Board of Directors for the Down Syndrome Association (DSAW) of Wisconsin since 2011 and previously served on the Volunteer Respite Committee for Children’s Service Society now part of Children’s Hospital of Wisconsin Community Services, and the Family Resource Connection of Milwaukee County.