Down syndrome and family support

Down syndrome is nobody’s fault and there is nothing that you did before or during pregnancy to cause it. Babies with Down syndrome are born to parents of every age, social class and race.

While parents generally experience shock on learning that their baby has Down syndrome, the majority of families adjust relatively quickly to this new situation. Parents may experience some degree of ‘appointment stress’ in the early days as a result of regular health and medical checks and early intervention appointments, but this period is usually short-lived.

Research suggests that despite the demands of living with a child with a disability, families can and do make the adjustment, often with little disruption to family life. Families generally find their feet and continue leading regular lives, incorporating the needs of their child with Down syndrome into their family circumstances.

Learning to live with Down syndrome

Every family is different. Some families will feel that their lives have hardly been affected by the addition of a family member with Down syndrome, others may experience this as a life-altering event.

Almost all families report that there continue to be highs and lows, times of elation and times of stress and anxiety. Periods of transition, such as moving into school or between schools, the onset of puberty, leaving school and entering adult life tend to be a challenge for everyone, supporting your child with Down syndrome to navigate these stages often requires specific support and resources

Support, either among families or through peer support groups, can contribute significantly to family wellbeing.

Individual personalities

No two children with Down syndrome are alike, and they have the same physical and emotional needs as any other child. They need:

• To be recognised as a unique personality
• To know that their family loves them
• To be treated like their brothers and sisters
• To be seen as a person first, rather than as a person with special needs
• To have access to education and leisure activities.

Importance of a supportive family

Over recent decades, people with Down syndrome have shown what they can achieve and this has completely changed our understanding of their abilities.

Family members have an important role in encouraging a person with Down syndrome to show what they are capable of. If a family has high expectations of the person, then the individual has the opportunity to rise to those expectations On the other hand, low expectations can limit the person's potential.

Families are also crucial in providing leadership for the rest of the community. The attitude and expectations of the family are usually mirrored by the community at large.

Families can have an important role as advocates for their family member with Down syndrome. By speaking up for a family member, families have been the driving force behind many of the progressive changes that have been made in the lives of people with Down syndrome over the years.

Support available

Many of the professional services available for people with Down syndrome recognise just how important families are. For this reason, many services have a ‘family-centred’ approach that allows families to decide what services that they need and use. This can help build resilience and develop independence. Sharing experiences with other families and taking part in support networks can also help to build resilience.

Where to get help

• Your GP (doctor)
• Your local community health centre
• Down Syndrome Victoria Tel. 1300 658 873 or email info@dsav.asn.au
• National Dementia Helpline Tel. 1800 100 500