Information for families, siblings and friends

If a family member or friend of the family has recently given birth to a baby with Down syndrome, you may initially feel concerned or confused as to what it is and what it will mean for your life and the lives of others you care about.  It is important to seek balanced up-to-date information about Down syndrome to get a clearer understanding. A good insight can often be obtained from information written by people with Down syndrome or by their family members.

First and foremost your friend’s/relative’s new baby has the same needs as all babies. They will eat sleep and cry and will need love and affection just like any other baby. The most important thing that you need to know about Down syndrome is that everyone with the condition is a unique individual.

The one constant is that every child with Down syndrome will have a certain level of learning disability. The learning disability affects a child’s ability to learn compared with other children of their age, it does not mean they cannot learn. Children with Down syndrome generally take longer to reach developmental milestones and they will need some additional support. The way the syndrome affects a person’s development, learning and health varies widely. The level of support that a person with Down syndrome needs as they grow up and throughout their lives will be different from person to person.

In some countries the quality of life, life expectancy, role in the community and life opportunities for people with Down syndrome have gradually been transformed as education and support have improved. However, we still have work to do to ensure that people with Down syndrome have many of the same life chances that the general population take for granted, especially in developing countries.

As a sibling, growing up with a brother or sister with Down syndrome can be a mix of good and bad experiences and emotions. Many siblings say their brother or sister with Down syndrome has made their life better. All siblings, however, sometimes need a little extra understanding and support. 

How you can help

It will come as no surprise that any new parent appreciates congratulations and being told how beautiful their baby is. Your friends/family are no different. Meet the new baby, get to know them and hold them. If the new parents have other children, don’t forget to make a fuss of them too so they don’t feel left out. As with any new baby, let the family know that you are there to offer support as their new baby grows up.