It's Academic Tutoring Center

            Down syndrome

Up Coming Events

---------------------------------------------------------------------------------------------------

ATACP Summer Program

July 27-30, 2006

Held at the Georgia Institute of Technology in Atlanta, this program on assistive technology and augmentative and alternative communication is sponsored by the Center on Disabilities at California State University, Northridge. Click here for more information.

---------------------------------------------------------------------------------------------------

NADD CONFERENCE and EXHIBIT SHOW

October 25-28, 2006 The 23rd Annual National Association for the Dually Diagnosed Conference and Exhibit Show will be held in San Diego, CA. The theme is “Promoting Mental Health in Children and Adults with Intellectual Disabilities: Cross Systems Collaboration.” For more information visit www.thenadd.org.

----------------------------------------------------------------------------------------------------

Georgia Voices That Count

January, 2007

Georgia residents don't want to miss the deadline for this exciting disability rights advocacy training and support project for people with disabilities. This program has been developed and is led by people with disabilities. For more information, contact Linda Pogue, Project Coordinator, at GreenPogue@aol.com.
-----------------------------------------------------------------------------------------------------

Tenth Annual Alliance National Conference

January 24-26, 2007

The Technical Assistance ALLIANCE for Parent Centers will hold its annual conference at the Hyatt Regency Washington, on Capitol Hill in Washington, D.C. More information can be found at www.taalliance.org   or by calling 888-248-0822.

------------------------------------------------------------------------------------------------------

21st Annual International Technology and Persons with Disabilities Conference

March 19-24, 2007

A comprehensive, international conference, where all technologies across all ages, disabilities, levels of education and training, employment, and independent living are addressed. For more information visit http://www.csun.edu/cod/conf/index.htm.

------------------------------------------------------------------------------------------------------

What is Down syndrome?
Down syndrome is a disorder that includes a combination of birth defects; among them, some degree of mental retardation, characteristic facial features and, often, heart defects, increased infections, problems with vision and hearing, and other health problems. The severity of all of these problems varies greatly among affected individuals. Down syndrome is one of the most common genetic birth defects, affecting approximately one in 800 to 1,000 babies. It generally is caused by an extra chromosome, the structures in cells that contain the genetic information (genes).

According to the National Down Syndrome Society, there are approximately 350,000 individuals with Down syndrome in this country. Life expectancy among adults with Down syndrome is about 55 years, though life span varies depending on the individual and his or her medical condition.

What causes Down syndrome?
Normally, each egg and sperm cell contains 23 chromosomes. The union of these creates 23 pairs, or 46 chromosomes in total. Sometimes, an accident occurs when an egg or sperm cell is forming, causing it to have an extra chromosome number 21. When this cell contributes the extra chromosome 21 to the embryo, Down syndrome results. All of the features and birth defects associated with Down syndrome result from having this extra chromosome 21 in each of the body's cells. Down syndrome also is called trisomy 21 because of the presence of three number 21 chromosomes.

Occasionally, the extra chromosome 21 is attached to another chromosome in the egg or sperm; this may result in what is called translocation Down syndrome. This is the only form of Down syndrome that can be inherited from a parent. In such cases, the parent has a rearrangement of chromosome 21, called a balanced translocation, which does not affect his or her health.

Rarely, a form of Down syndrome called mosaic Down syndrome may occur when an accident in cell division occurs after fertilization. Affected individuals have some cells with an extra chromosome 21 and others with the normal number.

What health problems might a child with Down syndrome have?
Almost half of babies with Down syndrome have heart defects. Some defects are minor and may be treated with medications, while others may require surgery. All babies with Down syndrome should be examined by a pediatric cardiologist, a doctor who specializes in heart diseases of children, and have an echocardiogram in the first 2 months of life so that any heart defects can be treated.

About 10 percent of babies with Down syndrome are born with intestinal malformations that require surgery. More than 50 percent have some visual or hearing impairment. Common visual problems include crossed eyes (amblyopia), near- or far-sightedness and cataracts. Most can be improved with glasses, surgery or other treatments. A pediatric ophthalmologist should be consulted, usually within the first six months of life. Children with Down syndrome may have hearing loss due to fluid in the middle ear, a nerve defect or both. Babies with Down syndrome should be screened for hearing loss at birth or by 3 months of age. Children with Down syndrome should have regular vision and hearing examinations so any problems can be treated before they hinder development of language and other skills.

Children with Down syndrome tend to have many colds and ear infections, as well as bronchitis and pneumonia. They also are at increased risk of thyroid problems and leukemia. Children with the disorder should receive regular medical care including standard childhood immunizations.

What does a child with Down syndrome look like?
A child with Down syndrome may have eyes that slant upward and small ears that may fold over a little at the top. His/her mouth may be small, making the tongue appear large. His/her nose may also be small, with a flattened nasal bridge. Some babies with Down syndrome have short necks and small hands with short fingers and, due to less muscle tone, appear somewhat "floppy."

The child or adult with Down syndrome is often short and has unusual looseness of the joints. Most children with Down syndrome will have some, but not all, of these features.

 

What are the Characteristics?
There are over 50 clinical signs of Down syndrome, but it is rare to find all or even most of them in one person. Some common characteristics include:

Poor muscle tone;

Slanting eyes with folds of skin at the inner corners (called epicanthal folds);

Hyperflexibility (excessive ability to extend the joints);

Short, broad hands with a single crease across the palm on one or both hands;

Broad feet with short toes;

Flat bridge of the nose;

Short, low-set ears;

Short neck;

Small head;

Small oral cavity; and/or

Short, high-pitched cries in infancy.
Individuals with Down syndrome are usually smaller than their non-disabled peers, and their physical as well as intellectual development is slower.

Besides having a distinct physical appearance, children with Down syndrome frequently have specific health-related problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are higher in those with Down syndrome, as are mild to moderate hearing loss and speech difficulty.

Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected.

Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities which overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent serious injury.

Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals' health and longevity. A supervised diet and exercise program may help reduce this problem.

How serious is the mental retardation?
The degree of mental retardation varies widely, from mild to moderate to severe. Most fall within the mild to moderate range, and studies suggest that, with proper intervention, fewer than 10 percent will have severe mental retardation. There is no way to predict the mental development of a child with Down syndrome based upon physical features.

What can a child with Down syndrome do?
Children with Down syndrome usually can do most things that any young child can do, such as walking, talking, dressing and being toilet-trained. However, they generally start learning these things later than other children.

The exact age that these developmental milestones will be achieved cannot be predicted. However, early intervention programs beginning in infancy can help these children achieve their developmental milestones sooner.

Can a child with Down syndrome go to school?
Yes. There are special programs beginning in the preschool years to help children with Down syndrome develop skills as fully as possible. Along with benefiting from early intervention and special education, many children are integrated in the regular classroom. The outlook for these children is far brighter than it once was. More mildly affected children can learn to read and write and participate in diverse childhood activities both at school and in their neighborhoods.

While there are special work programs designed for adults with Down syndrome, many people with the disorder can hold regular jobs. Today, an increasing number of adults with Down syndrome live semi-independently in community group homes where they take care of themselves, participate in household chores, develop friendships, partake in leisure activities and work in their communities.

What are the educational and employment implications?
Shortly after a diagnoses of Down syndrome is confirmed, 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. Continuing education, positive public attitudes, and a stimulating home environment have also been found to promote the child's overall development.

Just as in the normal population, there is a wide variation in mental abilities, behavior, and developmental progress in individuals with Down syndrome. Their level of retardation may range from mild to severe, with the majority functioning in the mild to moderate range. Due to these individual differences, it is impossible to predict future achievements of children with Down syndrome.

Because of the range of ability in children with Down syndrome it is important for families and all members of the school's education team to place few limitations on potential capabilities. 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.

Can Down syndrome be cured or prevented?
There is no cure for Down syndrome, nor is there any 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 (which has been shown to reduce the risk of certain birth defects of the brain and spinal cord).

Who has the greatest risk of having a baby with Down syndrome?
Parents who have already had a baby with Down syndrome, mothers or fathers who have a rearrangement involving chromosome 21, and mothers over 35 years old are at greatest risk. The risk of Down syndrome increases with age, from about 1 in 1,250 for a woman at age 25, to 1 in 1,000 at age 30, 1 in 400 at age 35, and 1 in 100 at age 40. However, about 80 percent of babies with Down syndrome are born to women who are under age 35, as younger women have far more babies.

Can Down syndrome be diagnosed before the child is born?
Yes. Prenatal testing using amniocentesis or a newer test called chorionic villus sampling can diagnose or, far more likely, rule out Down syndrome. As both procedures carry a small risk of infection and/or miscarriage, doctors generally offer them only to women at increased risk of having a baby with chromosomal or certain other birth defects.

A doctor may suggest amniocentesis if a woman receives an abnormal result on a blood test (often called the triple screen) done around the 16th week of pregnancy. However, this blood test does not provide a conclusive diagnosis: it simply means that additional tests such as amniocentesis should be considered. Ultrasound can also be used to detect many cases of Down syndrome.

Any family with a mentally retarded child or a child with other birth defects can discuss these tests with their doctor or health professional. He or she may refer the family for genetic counseling to learn more about their particular problem and the risks involved in having another child.

What is the risk that parents of a child with Down syndrome will have another affected child?
In general, in each subsequent pregnancy, the chance of having another baby with Down syndrome is 1 percent plus whatever additional risk a mother has, based upon her age. If, however, the first child has translocation Down syndrome, the chance of having another child with Down syndrome may be greatly increased.

After birth, the doctor usually takes a blood sample from a baby suspected of having Down syndrome to do a chromosomal analysis (called a karyotype). This determines if the baby has Down syndrome and what the underlying chromosomal abnormality is. This information is important in determining the risk in future pregnancies. The doctor may refer parents to a genetic counselor who can explain the results of chromosomal tests in detail, including what the recurrence risks may be in another pregnancy.

Can people with Down syndrome marry?
Some people with Down syndrome marry. With rare exceptions, men with Down syndrome cannot father a child. In any pregnancy, a woman with Down syndrome has a 50-50 chance of conceiving a child with Down syndrome, but many affected fetuses are miscarried. A substantial number of adults with Down syndrome (15 to 20 percent) develop Alzheimer’s disease in middle age.

Can babies with Down syndrome breast feed?

Babies with Down syndrome can usually breastfeed with professional help. (Aumonier) Breastfeeding can be comforting to mom and help her to bond with this her special baby. Breastfeeding helps protect the baby with Down syndrome against germs and provides the best nutrition for brain development. IBCLCs can help mothers breastfeed babies with Down syndrome and other neurological conditions. You can find an online registry of IBCLC’s at http://www.associationhome.com/ilca/web/referral.cfm .

 
Is the March of Dimes conducting research on Down syndrome?
Some March of Dimes grantees are investigating why errors in chromosome division occur, in the hope of someday preventing Down syndrome and other birth defects caused by abnormalities in the number or structure of chromosomes. Other March of Dimes- sponsored research is investigating the role of a gene in causing the brain abnormalities associated with Down syndrome, with the goal of treating the mental retardation associated with the disorder. An international team of scientists has mapped all the genes of chromosome 21, which eventually could pave the way for treatment of many features of this disorder.

Where can families affected by Down syndrome get additional information?
There are organizations across the country that provide information and support for families with children affected by Down syndrome. Two are:

National Down Syndrome Society
666 Broadway
New York, NY 10012
1-800-221-4602 or (212) 460-9330
E-mail: info@ndss.org
Web address: www.ndss.org

National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
1-800-232-NDSC or (770) 604-9500

E-mail: info@ndsccenter.org
Web address: www.ndsccenter.org

 
The Arc of the United States 
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
301.565.3842
E-mail: info@thearc.org
Web address: www.thearc.org

_______________________________________________________________
 

Current Research

Teacher Resources