What is Down syndrome?
Down syndrome is a genetic disorder that causes intellectual disability and other physical and learning challenges. The disorder is also known as ‘trisomy 21’ as it is caused by the presence of an extra copy of chromosome 21. Unfortunately the local name for this is “anak idiot”.
Inside the cells of our bodies are tiny structures called ‘chromosomes’. Chromosomes carry the genes that determine how we develop. Most people have 23 pairs of chromosomes in each of their cells. In people with Down syndrome, these pairs don’t divide correctly and this causes the baby’s cells to have an extra copy of chromosome number 21.
The extra chromosome can’t be removed from cells, so there’s no cure for the condition. The chromosomes divide incorrectly by accident, not because of anything the parents have done. Although the risk of having a child with Down syndrome increases with the age of the mother – a 20-year-old woman has approximately a 1 in 1,100 chance of having a Down syndrome child, whereas at 40 the risk increases to 1 in 68. Anyone can have a baby with Down syndrome. On average it affects about one in every 700-900 babies.
People with Down syndrome will have learning difficulties and some have more serious difficulties than others. It’s hard to tell how much a baby with Down syndrome will be affected as a child or an adult. Conditions linked with Down syndrome include heart problems and reduced hearing and vision. Many of these problems can be treated, and frequent health checks can ensure that any problems are detected as early as possible.
Until recently there has been no local support group to assist families who have Down syndrome children, however POTADS (Persatuan Orang Tua Anak Downs Syndrom) is changing all this. On Saturday April 14th I was honored to be invited to an annual gathering of families and friends of Down syndrome children, and this is what I learned…..
Some children are born “normal” and some children are born “special”. One of them is a child with Down syndrome. Getting a child with Down syndrome is something very, very unexpected. In general, parents will experience sadness, stress, guilt, hurt, denial and so forth. POTADS has created a community of families & children with Down syndrome. They exchange ideas and support each other.
POTADS strives to help restore the confidence of the child’s parents with Down syndrome so that they can educate the child to be self-sufficient in accordance with their shortcomings and advantages. In addition POTADS also informs the public that Down syndrome is not a disease or a dreaded curse. With the affection and guidance of parents of people with Down syndrome, these children can be educated, and become an integral part of the community.
The main goal of POTADS is to empower parents of children with Down syndrome to always be eager to help their children to achieve maximum growth, so that they can become self-reliant, achievers that can be accepted by the public; because children with Down syndrome have the same rights as other children.
- POTADS has a 24-hour accessible information center either by mail, telephone, internet or other communications media.
- Provides up-to-date information about Down syndrome development both scientifically and from the experiences of others.
- Disseminate information about Down syndrome to needy members and places to be accessed by parents with children with Down syndrome, such as Hospitals, Clinics, Puskesmas to Posyandu.
- Provide group and individual consultation as needed.
- Organizing activities that support the dissemination of information about Down syndrome to the wider community.
- Organizing activities that will encourage people to be more concerned and respectful; so they can give equal opportunities to develop in various fields (education, arts & culture, etc.).
The motto of POTADS Foundation is “I AM CAN”, meaning that people with Down syndrome, with all their advantages and disadvantages, still CAN and are still ABLE do be just like other human beings.
- Establish POTADS Information and Activity Center (PIK) throughout Indonesia. Currently PIK POTADS already exist in Medan, Bandung, Jogjakarta, Surabaya and Bali.
- Organize meetings with parents of Down syndrome children in collaboration with experts related to child development with Down syndrome (doctors, psychologists, therapists, and others).
- Empower the parents of children with Down syndrome through community support.
POTADS contact info: Hotline: 021 – 2870 3000
Mailing list: DownSyndrome-Indonesia@yahoogroups.com
Kim Patra is a qualified Midwife & Nurse Practioner who has been living and working in Bali for over 30 years. She now runs her own Private Practice & Mothers & Babies center at her Community Health Care office in Sanur.
Copyright © 2018 Kim Patra
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