Living with Down syndrome

Home care is just as important as ensuring that a child has adequate medical care and therapy. Parents have a crucial role in helping a child develop, face and overcome challenges and ultimately reach his / her potential.

It’s important to understand how a child with Down syndrome will face each life stage in order to help them through reaching milestones and achievements.

Early stages: babyhood / childhood (young)

• To help a child with motor development milestones, such as walking, play can be a very useful (and fun) way to strengthen muscles. A physical therapist can also help to develop an exercise programme as a child grows. It’s just as important to maintain and increase muscle strength in order to better develop physical skills.
• A child will learn to eat independently through gradual steps. At first, a child can use his or her fingers to learn to self-feed, before moving on to utensils. Sitting together as a family helps a child to observe and learn as well.
• Learning to dress will take a little time and practice, but can be achieved. Explaining the process in steps can help to develop a familiar routine which helps a child to learn to dress himself or herself.
• A daily routine for grooming and hygiene can also help a child learn the importance of cleanliness. Start with the essential basics, such as bathing and teeth cleaning and then introduce other tasks one by one, such as applying deodorant and face creams.
• For a child to learn to communicate effectively throughout their lives, learning should start at a very young age. A child will learn to communicate by mimicking the parents, to some degree. Looking directly at a child, naming objects and incorporating actions which show a child in addition to speaking are simple but effective ways of helping a child with Down syndrome to learn to communicate for themselves, as well as understand others. These simple steps will also help to enhance a child’s thinking skills and stimulate a continuous pattern of learning and developing.
• These types of learning habits will also help develop a child’s social skills effectively and encourage physical activity. No child with Down syndrome should be isolated from others. Working with teaching staff, it is possible to enrol a child in school with other children of a similar age and keep a child stimulated while encouraging learning.

School-going age (childhood)

• Parents should take an active interest in their child’s education, ensuring that they are consistently learning at a comfortable pace, in a regularly attended classroom environment. Depending on which school a child is enrolled in, parents can work closely with teachers to make the most of an existing curriculum for children with special learning needs or an adapted programme for a child with Down syndrome.
• Parents should also make an effort to be active with the child, encouraging sport participation or other things that a child particularly enjoys, such as walking the dog, tending a garden or other recreation or leisure programmes. Try introducing different activities to a child and see what he or she takes a fancy to most, before encouraging a routine. A routine is important for a child. An inactive lifestyle can contribute to further physical hindrances, such as bone loss, poor blood circulation, reduced fitness levels and even poor self-esteem. Children with Down syndrome tend to fare better with a regular routine. This helps maintain strong muscles, build endurance, improve self-esteem and promote better overall health. It also helps a child learn independence skills which will enhance their adult life too. Once a routine is established, parents can set short-term goals for a child, encouraging a sense of achievement and stimulating positive learning and growing, as well as fine-tuning skills by increasing levels of difficulty.

Teenage years (adolescence)

• Once a child reaches puberty, he or she will need to begin learning appropriate behaviour and social skills. Teenagers with Down syndrome will likely have the same needs as anyone else their age. In order to have and maintain healthy relationships, parents will need to be well aware of how to guide their child so that they learn the necessary skills that will achieve a healthy self-esteem and encourage peer acceptance.
• Parents will need to be aware of helping a teenager learn new grooming and hygiene habits, such as shaving or cleaning off make-up (once learned how to apply). Social skills may need to be adapted and a teenager encouraged to participate in both community and school activities. This encourages healthy friendships and the formation of new ones, and enhances a sense of belonging. Encouragement of these activities won’t be without challenges and social difficulties. Teenage years are a vulnerable and tricky time for anyone. It’s important to help a teen going through this transitional phase understand how to go about having healthy adult relationships, including those that may become intimate. Teaching respect for his or her own changing body, as well as those of others, encouraging open communication, honest education, and if necessary discussing safe birth control methods can help to promote better behaviour in a growing teen.
• Parents will also need to start thinking about the quality of life their child can have during their adult years, especially when it comes to earning a living and potentially living alone. Group homes and apartments with support services can work well for healthy, independent living. Parents can enrol their teenager in vocational training programmes to begin learning skills which will help him or her to secure a job once graduated from school. Other options include finding community employment on a part-time basis, or enrolling a teen in a workshop for an afternoon or day programme that can help to open the door for opportunities.
• Parents should encourage independence wherever they can during the teenage years. Learning basic things such as doing some light cooking, cleaning up after using a kitchen or bathroom, packing their own lunch and managing to dress completely independently can really help an individual prepare for adulthood.

Adulthood

An adult that has been well supported during the stages of childhood can lead an active, independent and healthy life. Many adults with Down syndrome are able to function well in society, lead an active lifestyle (with continued learning), earn a decent income at a regular job, as well as have healthy relationships (friendships and romantic).

Having a family that continuously encourages an adult with Down syndrome will help to ensure that he or she always has a sense of purpose and belonging. Whether interests be sporty or artistic, having continuous support and encouragement can really enhance an individual’s quality of life as an independent adult.

It’s also important that an adult with Down syndrome learns to maintain necessary medical care, and regularly attends check-ups or treatment facilities, and takes the required medications correctly. It will also work in an individual’s favour to learn how to care for their own health, and guard themselves from common infections such as colds and flu, bronchitis and pneumonia, in just the ways parents and medical teams taught them during childhood.