What is Down syndrome?
Down syndrome is the most frequently occurring genetic condition, affecting one in every 691 live births according to the U.S. Center for Disease Control and Prevention. “Trisomy 21,” the most common type of Ds, is caused by an extra (third) copy of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Down syndrome is not related to race, nationality, religion or socio-economic status. All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. The exact cause of the chromosomal rearrangement is currently unknown.
What are the physical characteristics of Down syndrome?
Individuals with Ds have physical characteristics similar to a family or ethnic resemblance. Individuals with Ds are also just that, individuals. The effects of the extra chromosome do not affect each person the exactly same. Some of the most common physical characteristics may include:
Facial features: A person with Ds’s face may be slightly broader with a flatter nasal bridge. Their eyes may appear to slant upward and have a small fold of skin on the inner corners called epicanthal folds. Their mouth may be small which might cause their tongue to appear large and poor muscle tone may cause the tongue to protrude. Their ears may be small, lower set on the head and tops may fold over.
Body: Babies with Ds usually start out at average weight and length. As they grow individuals with Ds often fall behind their typical peers. Adult males have an average height of 5 feet 2 inches and women reach about 4 1/2 feet. People with Ds often have smaller hands and feet. The palm of their hands might have a single crease across it called a simian crease or a transverse palmar and the fifth finger may curve inward slightly.
What kind of life skills does a person with Down syndrome have?
Babies with Down syndrome usually participate in early intervention programs. (South Dakota calls this program “Birth to Three.”) These programs are developed for an individual child that may include physical therapy, occupational therapy, speech therapy and more. Babies and toddlers with Ds also benefit from community programs like Mommy and Me, play groups, swimming and music programs.
Children with Ds are educated in many different ways. Some are included in the typical classroom with typical peers, sometimes with the help of a personal aid. Some may participate in a special education classroom on a typical school campus to enable them to have social and some class interaction with typical peers. Others are educated at a special education school with other peers with disabilities. Children with Ds also participate in many extra-curricular programs; typical athletic programs that they are included in like karate and swimming and also in programs developed just for individuals with disabilities like Special Olympics and Miracle League. Some children with Ds enjoy music and drama classes, visual arts instruction and computers.
Many adults with Ds live independently or in supported living programs. Others choose to live with their parents for some time. Many individuals with Ds have jobs, some work independently while others have job coaches to assist them. Some adults with Ds prefer to attend day programs that can focus on activities such as academics, the arts, recreation and life skills. Some adults with Ds rely on parents and friends for transportation, some use public transit independently and a few are able to pass their state driving test and get a license. There are also opportunities for continued education for adults with Ds in the form of post secondary schools particularly focused on life skills and vocational training as well as taking classes offered at local community colleges.
People with Ds often find a lot of satisfaction in the activities that they participate in and experience. Most individuals with Ds grow, learn and function well within the typical community. One area of strength for individuals with Ds is their social skills, which often exceed their academic achievements and help them to achieve a happy and productive life.
In summary, individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care, and positive public attitudes.
How do you write Down syndrome?
In the United States it is written: Down syndrome. There is no possession to the Down. The characteristics of the syndrome were first identified by Dr. Landon Down. The syndrome does not belong to Dr. Down, so no “’s” follows his name. We do however capitalize Down since it refers to a name. The syndrome is written with a lower case “s.” In the United Kingdome and some other countries it is referred to as Down’s syndrome.
Individuals with Down syndrome have specific health care needs. Additionally, children with Down syndrome grow and develop at a different rate than their “typical” peers.
According to the National Down Syndrome Congress, “the single most dramatic change effected by our community has been the astounding improvement of the health of people with Down syndrome. Through the caring innovation of medical professionals, the typical lifespan of an individual with Down syndrome now approaches the average for all people. Equally important, advancements in cardiology, nutrition, the behavioral sciences and so much more have opened a high quality of life for most if not all people with Down syndrome.”
Both the National Down Syndrome Congress and the National Down Syndrome Society have great resources concerning health of individuals with Down syndrome. There you will find health care guidelines, growth charts, and information about specialty clinics specific to individuals with Down syndrome.
Myths and Truths
Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.
Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.
Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.
Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are organizations directly involved in providing services to families of individuals with Down syndrome.
Myth: People with Down syndrome are severely delayed.
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.
Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.
Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
National Down Syndrome Congress (NDSC) is a non-profit organization founded in 1973. The purpose of the NDSC is to promote the interests of persons with Down syndrome and their families through advocacy, public awareness and information dissemination on all aspects of Down syndrome. The NDSC works to empower its members and all persons with Down syndrome by creating a national climate in which all persons will recognize and embrace the value and dignity of persons with Down syndrome.
National Down Syndrome Society (NDSS) is the largest non-governmental supporter of Down syndrome research in the United States. NDSS continues to increase public awareness about Down syndrome and discover its underlying causes through research, education and advocacy. NDSS distributes timely and informative materials, encourages and supports the activities of local parent support groups, sponsors conferences and scientific symposia and undertakes major advocacy efforts—all to increase awareness and acceptance of people with Down syndrome. The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.
Note: New Directions is proud to partner with and provide financial support to the NDSS and NDSC.