What is down syndrome
Down syndrome is a genetic condition where the individual has an additional copy of chromosome 21, resulting in several changes in their physical and cognitive development. This genetic defect could give rise to both mental and physical challenges, possibly hindering the development of the individual with down syndrome. Individuals with down syndrome are often presented with physical characteristics such as:
Flat face and nose bridge
Almond-shaped eyes slanting upwards
Small ears and mouth
Single line on the palm
Shorter than average neck and height
Individuals with down syndrome also commonly experience developmental disabilities or behavioural issues such as:
Impulsive behaviour
Poor judgement
Short attention span
Slow learning capabilities
Lower than average IQ
Slower than average speech
Living with down syndrome
In a world where stigma and discrimination exist, living with down syndrome can be difficult. Individuals with down syndrome are often shunned for looking or behaving differently. As a result, they are declined education and employment opportunities by most organisations.
According to the Ministry of Social and Family Development, only 28.2% of persons with disability (PWD), including those with down syndrome, are employed between 2018 and 2019. A separate survey conducted in 2016 found that approximately 60% of PWDs were declined opportunities in career or professional development. With limited opportunities available, most individuals with down syndrome turn to specific organisations such as the Down Syndrome Association for vocational training and job placement opportunities. With big dreams but limited resources, individuals with down syndrome often have to work a lot harder to fight for opportunities that many of us take for granted.
Similarly, family members of individuals with down syndrome commonly struggle with the upbringing of children with down syndrome in addition to the judgemental looks thrown in their direction. Due to the delayed cognitive development and behavioural issues, family members are often in higher distress when in charge of the caretaking of their child with down syndrome. Individuals with down syndrome are at higher risk of developing an array of other comorbid health conditions, such as infections, thyroid issues, and stomach problems, thus requiring more care and support from caregivers.
Aside from caretaking, parents whose children have down syndrome also struggle with finding employment due to their increased caregiving responsibilities. Oftentimes, the caregivers of children with down syndrome struggle to juggle both caregiving and work responsibilities, therefore finding themselves with limited career opportunities that enable flexible working hours. As a result, families with children with down syndrome often experience a lowered level of life satisfaction and poorer parent-child attachment. With a lack of awareness and a dark cloud of stigma surrounding down syndrome, family members of those with down syndrome often find a lack of support and resources available for them to turn to when in need of assistance.
Leading a fulfilling life
While there is no medical remedy for down syndrome, there are some ways to manage the symptoms of down syndrome to help you and your child lead a fulfilling life. Here are some tips you could consider implementing to support your child:
Set a routine. Setting a routine like having a weekly timetable helps your child adjust better to daily activities such as meals and bedtimes.
Establish communication. Communicate with your child by keeping it short, use simple language, and visual support to facilitate understanding. For example, to create a routine, use a list of words and/or a series of pictures to create a visual schedule. Social stories are a great way for children with down syndrome to learn how to react appropriately / desirably in various social situations.
Example of using visual stories to teach new skills and ease anxiety .
Example of visual schedule
Encourage the sharing of feelings. Help them vocalise their feelings and discuss how the problem can be solved in similar situations in the future.
Keep calm and be patient. Losing your cool could cause your child further distress and amplify negative impacts. Understand the behaviours your child displays when in distress. Identify what helps to calm them down, and talk them through an alternative reaction to similar situations that may happen in the future.
Incorporate learning with play. Playing and learning can come hand in hand. While your child is playing, play alongside them while guiding them through various concepts. For example, when playing with toy animals, you could use the opportunity to teach them the names of each animal.
Alternatively, you could seek support from organisations offering special care for individuals with down syndrome. Special education schools offer special care to meet your child’s needs. Specialised schools offer vocational training for future career opportunities. You could
refer to the Down Syndrome Association’s web page for more information on support and education.
Don’t forget to self-care
While we want to give the best to our children, self-care is important. It is imperative for us to stay healthy so that we have the capabilities to ensure that our child’s needs are met. Here are some things you can consider doing for yourself:
Build a support system for both you and your child. Involve your partner and family members in caring for your child. Sharing the responsibility could provide you with some time to catch a breath.
Make time for yourself. Watch a movie or go on a shopping spree. A break away from responsibilities, even a short one, can recharge your energy.
Take care of your health. Eat healthily and engage in daily exercise. Staying healthy allows you to be there for your child in times of need.
Seek social support. Sharing your concerns and challenges with your friends and family can provide you with different perspectives and insights. There is no need to wait for things to snowball into a crisis before seeking support. Alternatively, if you find yourself struggling to cope with the various roles and responsibilities, consider engaging in therapy. Our team of therapists can be an option and will be here for you if you need us.
Interesting reads
https://cityofgood.sg/wp-content/uploads/2020/10/NVPC-PWD-Issue-Deck.pdf
https://www.webmd.com/children/parenting-child-downs-syndrome
Co-author: Belinda Sng Qi Rong