Down Syndrome

DISABILITY CATEGORY: Mental Retardation—Down Syndrome

TYPES: Trisomy 21 Down syndrome (DS), Translocation Down syndrome (TDS), Mosaic Down syndrome (MDS), Mosaic Translocation Down syndrome (MTDS)

DEFINITION:

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEIA) defines mental retardation as...

            “...significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior. And manifested during the developmental period that adversely affects a child's educational performance.” [34 Code of Federal Regulations §300.7(c)(12)]

Other Definition:  Down syndrome is a chromosome abnormality, usually due to an extra copy of the 21st chromosome. This syndrome usually, although not always, results in mental retardation and other conditions.

FACTS AND STATS: In the late 19th century John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, which earned Down the recognition as the "father" of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

Down syndrome is the most frequently occurring chromosomal abnormality, occurring once in approximately every 733 live births. Over 350,000 people in the United States alone have Down syndrome. Down syndrome affects people of all ages, races and economic levels. (Source: National Down Syndrome Society)

CAUSES:

• Trisomy 21 is the most common form of Down syndrome.  The term “Down syndrome” itself most often refers to this condition. It occurs when a person has three rather than two copies of the 21st chromosome.

• Translocation Down syndrome occurs when a piece of chromosome 21 becomes attached to another chromosome, often number 14, during cell division. TDS can be inherited by parents, but this is not always the case.

• Mosaic Down syndrome happens when a person has a percentage of Trisomy 21 Down syndrome cells and the remainder of cells are normal.

• Mosaic Translocation Down syndrome occurs when a person has a percentage of TDS cells and the remainder of cells are normal. (Source: International Mosaic Down Syndrome Association)

Why Down syndrome [specifically Trisomy 21] occurs is currently unknown, although it does seem to be related to advancing maternal age. However, 80 percent of children born with Down syndrome are born to women under 35 years of age. This is because younger women have higher fertility rates. It does not contradict the fact that the incidence of births of children with Down syndrome increases with the age of the mother. (Source: NDSS)  Research by the Centers for Disease Control and Emory University showed that Younger mothers (<35 years) who smoke and have meiotic II error are at an increased risk of having children with Down syndrome. The combined use of cigarettes and oral contraceptives increased the risk even further. (Source: Centers for Disease Control)

PREVENTION: There is no method of prevention for the chromosomal accident that causes Down syndrome. However, recent studies suggest that some women who have had a baby with Down syndrome had an abnormality in how their bodies metabolize (process) the B vitamin folic acid.  If confirmed, this finding may provide yet another reason why all women who might become pregnant should take a daily multivitamin containing 400 micrograms of folic acid. (Source: March of Dimes).

Based on the findings of the CDC/Emory University study, women with a meiotic II who are pregnant or plan on becoming pregnant should avoid smoking cigarettes and avoid the use of oral contraceptives with cigarettes.

CHARACTERISTICS:

• Most individuals with mental retardation have some degree of mental retardation, however fewer than 10% have severe mental retardation

• Half of all children born with DS have heart defects

• More than 50 percent have some visual or hearing impairment. Common visual problems include crossed eyes (esotropia), near- or far-sightedness and cataracts

• About 10 percent of babies with Down syndrome are born with intestinal malformations that require surgery. (Source: March of Dimes)

• Many children with Down syndrome may have trouble paying attention- this may be due to ADHD which is fairly common, or it may be due to visual or hearing impairment. (Source: NDSS)

• Children with DS often have distinct physical features such as eyes that slant upward and small ears that may fold over a little at the top, a small mouth, and nose. The child or adult with Down syndrome is often short and has unusual looseness of the joints. (Source: March of Dimes)

MEDICAL TREATMENT: Currently there is no medical treatment for Down syndrome itself.  However, the specific medical conditions that may occur as a result of DS (e.g. congenital heart defects) may require medical attention.  The amount and type of treatment required depends on the severity of each case and varies among each individual.

PROGNOSIS: The prognosis for individuals with Down syndrome varies depending on the severity of their physical and cognitive limitations. Some people with DS may be able to live independently and others may need more support throughout their lives. Individuals with severe medical conditions may need to take medications regularly or might have to have multiple surgeries.  However, according to the NDSS, advances in medicine have rendered most health problems treatable and the majority of people born with Down syndrome today have a life expectancy of approximately 55 years.

EDUCATIONAL IMPLICATIONS: Mental retardation and low attention span are the conditions associated with Down syndrome that pose the greatest educational challenges for someone with DS. Approaches for teaching children with DS would be the same for teaching children with learning disabilities or cognitive disabilities.  It may be effective to emphasize concrete concepts rather than abstract ideas. Teaching tasks in a step-by-step manner with frequent reinforcement and consistent feedback has been proven successful. Improved public acceptance of persons with disabilities along with increased opportunities for adults with disabilities to live and work independently in the community, have expanded goals for individuals with Down syndrome. Independent Living Centers, group shared and supervised apartments and support services in the community have proven to be important resources for persons with disabilities.

For young children, parents should be encouraged to enroll their child in an infant development/early intervention program. These programs offer parents special instruction in teaching their child language, cognitive, self-help, and social skills, and specific exercises for gross and fine motor development. Research has shown that stimulation during early developmental stages improves the child's chances of developing to his or her fullest potential.            

The National Down Syndrome Society has created a new curriculum called Everyone Counts: Teaching Acceptance and Inclusion, is available for educators in grades K-6 nationwide to teach the values of diversity and the acceptance and inclusion of individuals with Down syndrome and other cognitive disabilities. The Everyone Counts program kit includes lesson plans and activities for grades K-1, 2-3, and 4-6, handouts, two videos, a poster and booklet about inclusion, teacher guidelines, and a resource list. It can be purchased directly from the NDSS.

ORGANIZATIONS AND WEBSITES:

International Mosaic Down Syndrome Association
PO Box 1052
Franklin, TX 77856
800-MDS-LINK
http://www.imdsa.com

The International Mosaic Down Syndrome Association is designed to assist any family or individual whose life has been affected by Mosaic Down Syndrome, assist in research, and provide support without regard to race, sex or religion. IMDSA strives to increase awareness in the medical, educational, and public communities throughout the world. The IMDSA website provides general information about DS and MDS specifically, as well as information about DS research and resources for families and educators.

National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
1-800-232-6372
http://www.ndsccenter.org

The mission of the National Down Syndrome Congress is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.  It is the purpose of the NDSC to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. The NDSC website provides general information about DS, resources for parents and news about legislation concerning DS.

National Down Syndrome Society
666 Broadway
New York, NY 10012
1-800-221-4602
http://www.ndss.org

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. A resource for families, professionals, affiliates and others, the NDSS Web site, receives 2.5 million page views each year and is one of the largest single sources of dependable information about Down syndrome available to the public. Updated daily, this site is a valuable tool for public education and information sharing.  The website also contains a page concerning Down syndrome and the arts which includes information about music and music therapy.

(http://www.ndss.org/content.cfm?fuseaction=InfoRes.SchEduarticle&article=719)

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