NURTURE INFORMATION HUB
By Nina N. Powell-Hamilton , MD,
Down syndrome is a chromosome disorder caused by an extra chromosome 21 that results in intellectual disability and physical abnormalities.
Down syndrome is caused by an extra chromosome 21.
Children with Down syndrome have delayed physical and mental development, specific head and facial features, and are often short.
Before birth, Down syndrome may be suspected based on ultrasonography or tests on the mother's blood and confirmed using chorionic villus sampling and/or amniocentesis.
After birth, the diagnosis is suggested by the child’s physical appearance and is confirmed by finding an extra chromosome 21, usually by testing a blood sample.
Most children with Down syndrome survive to adulthood.
There is no cure for Down syndrome, but some specific symptoms and problems caused by the syndrome can be treated.
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.
Children 6 -12 years old
Some key areas for consideration for this age bracket for a child with Down syndrome are:
By the age of 6, many children with have established services and support providing early intervention. The benefits from early intervention continue to be important especially with speech, physical and occupational therapy as children grow and develop and seek more independence.
It is important to have regular health checks for your child while they are of school age. Some children are affected by sleep apnoea, cardiac issues, hypothyroidism and childhood leukaemia.
Many children suffer from fluctuating hearing loss caused by middle ear fluid. It’s important to have this checked regularly as loss of hearing can have a significant impact on the child’s learning. Many children also have some level of visual impairment so it’s important for them to be wearing the correct glasses.
Children with Down syndrome have the same rights in all areas of life as their peers without disability and this age range is a key transition point to mainstream schooling.
Research shows that children with Down syndrome achieve better outcomes when in inclusive mainstream education both with literacy and social skill development. Children with Down syndrome will have different levels of ability and it is not about children keeping up with their peers but making reasonable adjustments to support learning. Working closely with your child’s school to ensure all the right services and resources are in place for your child is important.
Community inclusion is important during this age bracket. Children with Down syndrome should be encouraged and supported to play sports with their peers and join community activities that they are interested in. Children will have a strong awareness, desire and ability to learn from their peers at this age.
Kids will be empowered when spoken to positively to and have the right support in place. Having the right healthcare workers around them that see their ability and not their disability will help them immensely. Sending your child to a school where the teacher has a high expectation of the child will give them the best start in school. Keeping up to date with latest research and opportunities for children with Down syndrome is also important.
Learning as much as you can about disability, rights and advocacy can help with easing anxiety. It can guide you to make more informed choices about what is the best thing for your child. Meeting other parents that have a child with Down syndrome or joining an online support group can provide support and advice.
Questions you can ask your healthcare and education team