Down Syndrome 

Evidence  

https://www.sciencedirect.com/science/article/abs/pii/S1355184117301412 

Katrina Diamandopoulos, Janet Green 

Down syndrome is a complex genetic disorder resulting in three copies of chromosome 21. Babies with this genetic disorder will have recognisable characteristic facial features that will differ from one baby to another. They will also have some degree of cognitive impairment and learning difficulties. There are many medical conditions associated with Down syndrome, however, due to recent medical advances there have been improvements in their health and longevity. 

Education 

What is Down syndrome? 

Down syndrome is a genetic condition and is also sometimes known as trisomy 21. Down syndrome occurs at conception. People from all different backgrounds and ages have children with Down syndrome. Our bodies are made up of trillions of cells. In each cell there are tiny structures called chromosomes. The DNA in our chromosomes determines how we develop. Most people have 23 pairs of chromosomes in each of their cells (46 in total). People with Down syndrome have 47 chromosomes in their cells. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21. 

Every person with Down syndrome is an individual. Just like everyone else they will have different things they are good at and other things that they find harder. People with Down syndrome are capable of living full, happy lives as valued members of their communities. 

People with Down syndrome may have: 

• areas of strengths and other areas where they need more support, just like everyone else in the community 

• some level of intellectual disability 

• some characteristic physical features 

• increased risk of some health conditions (many of which are treatable) 

• some developmental delays. 

Down syndrome is a genetic condition, not an illness or disease. It is nobody’s fault. There is no cure, and it does not go away.  

“It is estimated that approximately 1 in every 1100 babies born in Australia will have Down syndrome. This means that each year there are approximately 290 new  

babies born each year who have Down syndrome.” 
https://www.downsyndrome.org.au/about-down-syndrome/statistics/ 

The life expectancy of people with Down syndrome is increasing with a median age currently of 60 years. People born with Down syndrome go to school, study, get a job and get married. Some families find that the information provided to them and language used about their child is unbalanced and negative, overlooking the strengths and possibilities for their child and their family’s future. It’s important that people with Down syndrome have the understanding and support of professionals, families and communities so they can participate and be fully included in everyday life.   

Early Intervention 

During the early years of life, children achieve the basic skills that lay the foundation for future progress. Children with Down syndrome typically face delays in certain areas of development. The main goal of early childhood intervention services is to help you understand and meet the developmental needs of your child and to put into place strategies to assist their development.  

It’s important to recognise that engaging young children in everyday activities within the family and community provides rich opportunities for informal learning and development. Learning opportunities based on children’s personal interests can make a real difference to child engagement and lead to improved outcomes.  

Early childhood intervention services are designed to enhance the way infants and toddlers develop. However, most learning will occur at home between visits to professionals as strategies are implemented and skills practiced not during the sessions. 

When families and therapists work together as a team, the best outcomes can be achieved for the child with Down syndrome. Whilst they may be experts in child development, therapists do not know each child as well as the parents 

do, and they don’t know initially what strategies will work best for that child and the family. Therapists using a family-centred approach recognise that we set children up for success by ensuring their families are also doing well and accessing the support they need. The best approach, leading to the best outcomes for your child, is for professionals and parents to pool their knowledge and expertise and work together. 

The most common early intervention services for children with Down syndrome are physiotherapy, speech therapy and occupational therapy. There may sometimes be other professionals involved. Often a holistic approach, where therapists are working together to achieve specific goals with the child is beneficial, rather than multiple therapists working in isolation. 

Further information about communication, language development, sensory issues and physical development can be found here.  

Empowerment  

Children with Down syndrome are all different and whilst there may be some developmental and health issues that are more common for a child with Down syndrome, it is important to look at your child as an individual and respond to their unique needs as they arise. 

Perhaps the most important factor in the development of children with Down syndrome is the attitude of the people around them. 

It is important to set high goals and believe they can reach them, celebrate every success (even the little ones!) and give lots of encouragement along the way.  

Connecting with other families can also be helpful in sharing strategies, ideas and different approaches. 

Need questions answered 

The Down Syndrome Federation (comprising Down Syndrome Australia, and its State and Territory Members) provides support and information for people with Down syndrome and their parents and support networks. The national 1300 number (1300 881 935) will connect you to your local state or territory Down syndrome organisation.  Staff at the organisation can provide you with information and answer questions.  They can also connect you to other families of children with Down syndrome. 

Useful Links  

Special thanks to Down Syndrome Australia for content sharing and providing support for families 

Down Syndrome Australia Federation 

https://www.downsyndrome.org.au/ 

Reimagine Australia  

www.re-imagine.com.au 

Raising Children Network 

https://raisingchildren.net.au/disability/guide-to-disabilities/assessment-diagnosis/down-syndrome 

https://raisingchildren.net.au/disability/videos/down-syndrome-overview 

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