Down syndrome is a disorder characterized by certain physical and functional features. Usually due to the presence of three chromosome #21-trisomy 21, in each cell rather than two chromosomes, the extra genetic material is responsible for the physical features as well as the mental impairment seen in every teen with this problem. Approximately ninety-five percent of teens with Down syndrome have trisomy 21 and a total of forty-seven chromosomes rather than the forty-six chromosomes found in individuals without Down syndrome. This extra genetic material gives rise to the features of Down syndrome.
The risk for Down syndrome increases with the age of the mother of the child. Approximately fifty percent of babies with Down syndrome are born to mothers who are older than thirty-five years and most of these babies have trisomy 21. Occasionally Down syndrome will be seen in children of younger mothers; the genetic basis for this event may be due to a chromosomal translocation where a section of one chromosome is placed into another chromosome. Sometimes this translocation occurs spontaneously, and rarely the translocation will occur when the parents have a translocation in their own genetic makeup.
Teens with Down syndrome are shorter than the average adolescent. Their head is usually small and round and the back of the head may be flat. The nose is small, neck is short and the ears are also small. The eyes usually have a Mongolian slant. Teens with Down syndrome have diminished muscle strength and all have some degree of mental impairment that can range from mild to severe.
About thirty-three to fifty percent of teens with Down syndrome have congenital heart disease, which could include an opening between the ventricles of the heart. There is an increased chance for leukemia, a cancer of the blood. Up to twenty-five percent of teens with Down syndrome could have instability of the upper cervical spine where it connects to the skull. There is also increased risk for a low thyroid termed hypothyroidism in Down patients as well as celiac disease. Patients with celiac disease have intolerance to gluten that is found in wheat, oats, barley and rye.
Most children with Down syndrome are diagnosed at or shortly after birth. These children are usually thoroughly evaluated by a wide range of professionals and are placed in special education programs. Cardiologists, neurologists, developmental specialists, orthopedic surgeons, endocrinologists, psychologists, physical therapists and occupational therapists are some of the medical and health specialists who may be called on to evaluate and treat a child with Down syndrome.
By adolescence, other issues may take the forefront. With the onset of puberty, the teen with Down syndrome needs to learn about his or her body changes. Menstruation, wet dreams, increasing sexuality and contraception are just a few of the issues that need to be discussed with teens that have Down syndrome as well as their parents.
Teens with Down syndrome will have special issues in regard to education, social interactions, job prospects and housing as they approach adulthood. Ideally, the teen with Down syndrome will be mainstreamed with other adolescents during middle school and high school. Education will usually stop after high school, so preparation for employment should take place during the high school years. Those teens with moderate or severe mental impairment will need even more assistance.
Because of small size, diminished muscle strength and other physical limitations, most teens with Down syndrome do not play on high school athletic teams. Rather they participate and often do well in settings such as Special Olympics.
Mainstreaming in school helps the teen with Down syndrome to find new friends and acquaintances. Nonetheless, it is likely that there will be issues of a social nature as the teen with Down syndrome tries to find his or her place in the social scene at school.
Teens with Down syndrome have a sexual drive and must be counseled on contraception, sexual mores and sexually transmitted disease. A female with Down syndrome has a higher risk of delivering an infant with Down syndrome, not to speak of the issues of a mother with Down syndrome raising a child.
As an adolescent with Down syndrome approaches adulthood, there must be planning for a more independent living away from the nuclear family. Most older adolescents or young adults who have Down syndrome live in a supervised or group setting. Community-supported employment should be sought for these teens and serious thought given to financial planning and guardianship as the teen approaches his or her third decade. This is especially important as the parents of the teen age. It is also important to determine if any other relatives are willing or able to care for a teen with Down syndrome as he or she approaches adulthood.
Each year, the adolescent with Down syndrome should have a physical examination with period blood counts and thyroid function screening. Periodic screening of hearing and vision is also necessary. Male patients should be taught about testicular self-examination and contraception although most males with Down syndrome are infertile. Special care should be taken to talk about menstrual hygiene and routine gynecological examinations, especially when the adolescent reaches eighteen years of age. Teens should be screened for the presence of instability of the upper cervical spine. X-rays as well as a neurological examination are usually indicated for each Down patient.
It is especially important to emphasize proper nutrition and physical fitness for adolescents with Down syndrome. Since teens with Down syndrome have less muscle strength than the average adolescent, they tend not to participate in sports. Coupled with a genetic tendency to be overweight for height, these teens usually have a higher risk for obesity and related medical problems. Appropriate physical activities can increase muscle strength, produce good psychological results, decrease subcutaneous fat and improve social skills.
Not too many years ago, adolescents with Down syndrome were usually institutionalized where little time or attention was given to education, social skills, physical fitness or nutrition. Unfortunately, some did not receive needed medical care including surgery for correction of heart defects. Stereotyped with the pejorative term “Mongolian idiots,” these children were frequently given up at birth and institutionalized. With the advent of special education laws, changes in society’s attitude toward teens with special needs and further refinements in medical care, most adolescents with Down syndrome stay with the nuclear family. It is common now for these teens to complete high school and find gainful employment. A few go on to independent living. Teens with Down syndrome are lovable, warm and caring individuals who often can find their place and role in society.
Related topics:
Academics, chronic illness, disabilities, genetic disease, menstrual hygiene, mental retardation
