Down Syndrome

Down Syndrome (also known as Down's Syndrome) is a genetic disorder that occurs in about one per 1000 babies born each year. Children living with Down Syndrome will experience some developmental delays and learning difficulties. Often, they can have delayed development in language and speech. 

The presence of a third copy of the 21st Chromosome causes Down Syndrome. Chromosomes are composed of DNA and other proteins and are present throughout every cell of the body. They carry the genetic information needed for cells to develop. People usually have 46 chromosomes divided into 23 pairs of chromosomes.

Down syndrome occurs when there is a problem during cell division, which results in a third 21st chromosome, which is why Down Syndrome can also be called Trisomy 21.

When a baby is born with Down Syndrome, there is no way to tell the extent of their intellectual disability or the way it may affect their lives. Environmental, cultural and social support can help to shape their lives. Most children born with Down syndrome will lead a happy, healthy and fulfilling life. Some children will only require minimal support, while others may need more extensive help.

Prenatal screening and diagnostic testing can detect Down Syndrome during pregnancy. Initial prenatal screening, though not providing definitive answers, offers a low-risk method to identify Down Syndrome during pregnancy and can inform parents if there is a need for further testing. Further diagnostic tests are more invasive and include amniocentesis or chorionic villus sampling (CVS). Amniocentesis involves collecting a small amount of fluid from the amniotic sac surrounding the foetus. A sample of DNA is then extracted from this fluid and examined for genetic abnormalities. CVS is when a small sample of placental tissue is collected to test for chromosomal abnormalities.

Common Features

Individuals living with Down syndrome have an intellectual disability ranging from mild (IQ: 50-69), moderate (IQ: 35-50) or severe (IQ: 35 or under). Intellectual disabilities in children that have Down Syndrome can cause some delayed development. They may experience delayed language and speech development and be slower in learning skills such as crawling, walking, sitting, and standing. Most will develop the necessary communication skills to live a fulfilling life, although it may take longer than other children. They can have cognitive and behavioural problems, including short attention spans, poor judgement, and impulsive behaviour. People with Down syndrome often need more support as they grow up, including in the school and home environment.

Expectations of those with Down Syndrome

Adults with Down Syndrome often express a desire to be recognised as individuals beyond their disability, seeking to overcome societal limitations and expectations. These individuals have unique strengths and weaknesses and can possess amazing talents, abilities, thoughts and interests. They experience a full range of emotions, including frustration, happiness, embarrassment, and sadness, just like anyone else.

As adults, people with Down Syndrome have the same aspirations that we all do, including intimacy, close friendships and family, and a home. They may learn to live on their own but will likely need help with more complex issues such as birth control or managing money. Some go to college, while others manage to gain meaningful employment. Many adults with Down Syndrome can live productive lives in their own homes with minimal support while working and earning an income, whereas others may need added support. They can often develop relationships, build a happy family and have a positive future, just like all of us.

What Support is available?

Support for Parents
Raising a child with a disability presents unique challenges, yet with suitable support, families often find ways to adapt and maintain a harmonious family life. There are many supports available to assist with the additional needs of a child with Down Syndrome.

There is a national network of peer support groups for parents who care for a child or adult with Down Syndrome. Peer support groups provide an excellent opportunity to get together with other families that have been through similar experiences. They often have regular meetings where people can share ideas and experiences and meet new friends.

Down Syndrome Australia can help to connect you to these groups and provide support and information. They may visit the family home or some hospitals. 

Early Intervention

Early Childhood Intervention Services provide specialised support for infants and young children with developmental delay or disability and their families. These services help the family achieve their child's goals and develop skills and abilities.

Early childhood intervention is critical for brain development when learning is most rapid. Skills developed during this early period can affect future growth, reducing the support needed in later life. It is also essential for the family as they learn to adapt and meet the needs of having a child with Down Syndrome.

Educators/teachers, speech pathologists, occupational therapists, physiotherapists, family support workers, psychologists, and other professionals can provide early childhood support.

Children's development, including those with Down Syndrome, thrives on family love and support. Engaging in play-based learning and developing communication skills with your child is ideal for their positive growth and development.

Government Support

The National Disability Support Scheme (NDIS) is an Australian government-funded program that provides financial assistance to families living with disabilities throughout Australia. To be eligible to participate, a person must meet the NDIS's age, residency, and disability requirements.

Better Start is another government-funded program that assists in the development of children with Down Syndrome but is slowly being phased out and replaced by NDIS.

The Australian Government also provides a Disability Support Pension as an income replacement separate from NDIS funding.

For more information, please visit Service Australia. 

How JettProof can help? 

JettProof for Down Syndrome

JettProof Calming Sensory Clothing is used by children and adults living with Down Syndrome throughout Australia and the world. JettProof undergarments help them regulate their bodies, allowing them to stay calm and focused. 

JettProof clothing is expertly designed to be comfortable to wear in all conditions, all day, every day. It has no internal tags or seams for those with tactile sensitivities. JettProof continues to help families living with disabilities and receives regular positive feedback and testimonials.

JettProof is an NDIS registered provider. Please click here for more details on how to use your funding.