Coping with Down Syndrome
Down syndrome (DS), also called Trisomy 21, is a combination of physical abnormalities and mental retardation characterized by a genetic defect in chromosome pair 21. Down syndrome is the most common cause of mental retardation and malformation in a newborn. It is named after John Langdon Down, the British doctor who described the syndrome back in 1866.
The cause of Down syndrome was then discovered in 1959. Down syndrome is relatively well known, with distinctive characteristics such as mental retardation, distinguishing facial features, and other traits. In the United States, Down syndrome occurs in 1 in 800 live births, and approximately 6000 children are born with Down syndrome each year. About 85% of infants with Down syndrome survive 1 year, and 50% of people with Down syndrome live longer than 50 years.
Causes. The three genetic variations that can cause Down syndrome include:
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- Trans location Down syndrome. Down syndrome can also occur when part of chromosome 21 becomes attached (trans-located) onto another chromosome, before or at conception. Children with trans-location Down syndrome have the usual two copies of chromosome 21, but they also have additional material from chromosome 21 stuck to the trans located chromosome. This form of Down syndrome is uncommon.
Risk factors include:
- Advancing maternal age. As a woman's eggs age, there's a greater inclination for chromosomes to divide improperly. So a woman's chances of giving birth to a child with Down syndrome increase with age. By age 35, a woman's risk of conceiving a child with Down syndrome is 1 in 385. By age 40, the risk is 1 in 106. And by age 45, the risk is 1 in 30. However, most children with Down syndrome are actually born to women under age 35 because this younger group of women has far more babies.
- Mothers who already have one child with Down syndrome. Typically, a woman who has one child with Down syndrome has about a 1 percent chance of having another child with Down syndrome.
- Parents who are carriers of the genetic trans location for Down syndrome. Both men and women can pass the genetic trans location for Down syndrome on to their children.
Symptoms: Children with Down syndrome have a distinct facial appearance. Though not all children with Down syndrome have the same features, some of the more common features are:
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Children with Down syndrome may also have:
- Poor muscle tone
- Broad, short hands with a single crease in the palm
- Relatively short fingers
- Excessive flexibility
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 long life. It is important for parents and caregivers to have a full understanding of Down syndrome facts and access to support in order that they can best help the child reach their full potential.
The degree of mental retardation varies widely from mild to moderate to severe. However, most fall within the mild to moderate range, and studies suggest that, with proper training, less than 10 percent will be severely mentally retarded. In most cases, the diagnosis of Down syndrome is made according to results from a chromosome test administered shortly after birth.
Treatment: Unfortunately, there is no specific treatment for Down syndrome. However, treatment is available for the health problems. Scientists do not know why problems involving chromosome 21 occur. Nothing either parent did, or did not do, caused Down syndrome. But children with Down syndrome do benefit from medical help and early interventions, starting in infancy.
- If your child has Down syndrome, you'll likely become acquainted with a team of doctors that may include a pediatric cardiologist, a gastroenterologist, a developmental pediatrician and other specialists. These doctors can detect and treat complications of Down syndrome, such as heart defects, gastrointestinal problems and hearing problems.
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When a baby is born with a birth defect, often times the parents begin to wonder whether they were responsible. However, downs syndrome is a birth defect that cannot be prevented. No amount of prenatal care or vitamins can control or influence the number of chromosomes a baby inherits. Thus, parents should not blame themselves. In general, children with Down syndrome usually meet developmental milestones, but it may take them a little longer than it does for children without the syndrome. For example, children with Down syndrome may take twice as long to sit, crawl, walk or say a first word. However, early intervention programs, started as soon as possible, may give kids with Down syndrome the best chance of success.
Educational Support to Down syndrome children: There are many special schools for children suffering from Down syndrome. Teachers can be great allies in keeping your child with Down syndrome safe and successful in school, but you'll need to make sure they have all the knowledge they need to help.
There are a number of education projects in different parts of the world at the present time, where expert teams are supporting inclusive educational placements for children with Down syndrome, providing training and publishing practical guidelines for schools and classroom teachers such as The Prep Programme in Calgary, Canada and the Down Syndrome Society of South Australia Programme based in Adelaide, Australia. In both these programmes, teams of experts are working to demonstrate how to achieve effective, successful inclusion from independent projects committed to the welfare of children with Down syndrome.
| Encourage a positive environment: Your input is invaluable in fostering the kind of accepting and helpful atmosphere a student with Down syndrome will prosper in. Having a positive attitude solves problems even before they surface. Laying the groundwork for including a student with Down syndrome is as important as what happens once the child arrives. Some schools have found it beneficial to talk to the parents of the class, including the parents of the child with Down syndrome, before the school term begins. A network of open communication between all the parents will, in turn, filter down to the students. Including the parents, an informed class will be less likely to make snap judgments about the child with Down syndrome. |  |
Communicate with parents and family: Having a child with Down syndrome in your classroom is an experience that can fuel apprehension not just on your end, but with the parents of the child as well. Open and honest two-way communication will ease the transition for all during this exciting and challenging time. Learning about the child's history and preferences will actually be an enormous help in adopting relevant teaching material for the child.
Talk to the parents about the child's background and daily routines. How many brothers and sisters does s/he have? What are their names? Where does s/he play? What is his/her favorite food? Including photographs of these people and familiar places or activities in the curriculum will be extremely helpful to the child, who will likely respond well to visual cues. The child will be highly motivated by seeing him/herself in the photos, which will optimize his/her acquired reading and writing skills. Collaborate with the child's parents and start a homework journal, a diary of daily events, which will be a good starting point for any written or language activity in the classroom, such as news time.
Work on reading: Reading is vital for the development of speech and language - it enables the child to visualize language and to overcome learning difficulties associated with listening. The child has more time to process the text during reading, which will help him/her to understand the meaning of the text and store it in the memory. Speech processing, on the other hand, is a short-term stimulus which can be lost if the child's auditory short-term memory is not very effective. Reading also helps the child to understand syntactical rules, word morphology and grammar. Improved articulation and word production skills become enhanced during the reading process, and the child can even practice sentences s/he may not yet be able to say. Learning to read also has a profound effect on the child's self esteem, independence and quality of life.
Thousands of young people with Down syndrome across the country are quietly going on with their lives without fame or fanfare and transforming their communities by just being there. They have dreams and the determination to reach their goals. They learn in regular classrooms in their neighborhood schools with the children who will one day be their co-workers, neighbors and adult friends. Young adults hold diverse and meaningful jobs, maintain their own households, and make significant contributions to their communities every day.
Important links:
National down syndrome society
Support Group in USA:
http://www.wellsphere.com/wellmix360/support-groups-for-downs-syndrome
Support Group in UK:
Support Group in Australia:
http://www.downssa.asn.au/dsssa/index.php
http://www.dsansw.org.au/index.php
(Sources: Mayo Clinic, eMedicine Health, Down Syndrome.org)
