NURTURE INFORMATION HUB
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:
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.”
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. It’s important that they have the understanding and support of their communities so they can participate and be fully included in everyday life.
Adolescents 13-17 years old
Adolescence is a time of change for any young person. Adolescence is also a transition point for many young people to start high school and to start thinking about what they want to do after they finish school. Parents naturally worry about normal things like social pressures, vulnerability, sexuality and physical safety. Just like other teens, adolescents with Down syndrome also need to learn about their bodies, relationships and sexuality.
Some key areas for consideration for a teenager with Down syndrome are:
Transitioning to high school
Moving from primary school to secondary school can be a big adjustment for young people and their families. It is a good idea to visit the schools you are considering for the person with Down syndrome. When you are visiting schools, collect as much information as you can to get a good idea of whether this school will be able to provide a great education for your child.
There are a range of issues to consider including:
Some families find that transition to secondary school is a time when accessing inclusive education can become more difficult. Research over the last 40 years shows that students with disabilities who are educated in general education settings, outperform their peers who have been educated in segregated settings, in both social and academic outcomes. All children are eligible to attend a mainstream school, however the decision on the best option for the child is up to the individual family.
You can find more information about inclusive education in the Education Toolkit on the Down Syndrome Australia website.
Post school transitions
It is also important to start thinking about what types of things the person with Down syndrome might like to do after they finish school, whether this be employment or further study. It is important to support the young person with this and help them to make decisions about where, and what type of work or study they might like.
There is information on education and case studies about post-school education available in the Education Toolkit.
There are also resources to support school leavers who are entering employment in the Employment Toolkit.
Job Access - www.jobaccess.gov.au
NDIS - https://www.ndis.gov.au/understanding/ndis-and-other-government- services/employment
Volunteering Australia - www.volunteeringaustralia.org
Adolescents with Down syndrome experience the same progression of physical and hormonal changes associated with puberty as other young people. However, they may experience a delay in the development of social maturity and emotional self-control. Learning about their bodies and puberty is essential to helping young people to be educated, aware and to stay safe. Providing information about puberty in a timely way can help your child be ready for the changes that puberty brings. Most teenagers can manage themselves in the area of self-care but may need support with more complex activities. Personal hygiene becomes a priority so it is important for parents to keep modelling and teaching their teen as it might take a little longer for them to understand.
Sexuality and relationships
Teenagers and young adults with Down syndrome often express interest in dating, marriage and parenthood, just like teenagers and young adults without Down syndrome. It is important that the expression of these feelings – in socially acceptable and age-appropriate ways – is supported by families and caregivers to promote safety and wellbeing.
Sex education should be understandable, age appropriate and provided in a way that the young person with Down syndrome understands. Information should be factual, realistic and focus on the importance of personal responsibility, safety and community expectations for adult behaviour.
Physical and mental wellbeing
Being healthy and active is important at any age, but especially so during adolescence as the young person experiences many changes both physically and emotionally. Weight management can be a common challenge for teenagers with Down syndrome, so it is important to have regular exercise and a healthy diet. Teenagers also require regular health check ups along with looking after their mental health.
Young people with Down syndrome who socialise with friends and family have increased self-esteem, well-being and happiness. It is important for them to have social opportunities to develop social connections and help prevent depression. You can find more information in Down syndrome and mental health.
There are resources available to support teens and adults with Down syndrome to participate in community activities and join sporting groups. You can find out more in the Community and Sporting Toolkit.
As a parent we can empower our teenagers by speaking positively to them and believing in them. Having the right healthcare workers around them that see their ability and not their disability will help them immensely. Sending your teenager to a school where the teacher has a high expectation of the child and has an individualised educational plan for the teenager can prepare them for experiencing future employment. Keeping up to date with latest research and opportunities for teenagers with Down syndrome also is important.
Learning as much as you can about the disability can help with easing anxiety. It can guide you to make more informed choices when you can see how much you can do for your teenager. Meeting other parents that have a child with Down syndrome or joining an online support group can also help support you. Work closely with your teen’s school to ensure all the right services and resources are in place for your teenager.
Questions to ask your education and healthcare team
Special thanks to Down Syndrome Australia for content sharing and links