Congratulations on the birth of your baby!
You are not alone… one in every 700-900 babies born worldwide will have Down syndrome. New families from around Victoria contact Down Syndrome Victoria every year. We are here to offer support and information to help you… especially in the early days.
Today, the future of children with Down syndrome has never been brighter. People with Down syndrome and their families have a lot to look forward to and with advances in health care, education, and support services, we only see these opportunities growing.
Learning that your child has Down syndrome can still come as a shock and is almost always unexpected news. Every parent’s reaction will be different. Most parents experience, to some extent, feelings of loss, shock, sadness, disbelief, anger, or even a sense of grief and this is all quite natural. Allow yourself time to adjust, and know that any feelings you may be experiencing do gradually subside, and there is no need to feel guilt for any emotions that may arise.
Some parents can find it more difficult to accept and bond with their baby in the early days. Some find themselves becoming very protective and anxious about their baby’s welfare and some experience feelings of inadequacy, embarrassment or guilt because their baby has Down syndrome. Being confronted with a disability sometimes makes people realise how many subconscious expectations they had in regard to their baby, which can also lead to feelings of guilt and shock.
There is no right or wrong. Any and all of these reactions are common and, in the vast majority of cases, they will pass.
Family Support at Down Syndrome Victoria is here to help you navigate these times.
We know that having a good understanding of what to expect can help to minimise feelings of uncertainty. Most people do not know a lot about Down syndrome until they have a child with the condition. Often, impressions of what it means are based on outdated information. If you are reading this, you have already taken a significant step towards finding out what Down syndrome means for your child – and you will find that your reassurance grows as you find out more.
There is no ‘one size fits all’ way to approach these early days but, be reassured; most families do cope, and even flourish! One thing which seems to help most families – both mothers and fathers – is being open about their feelings and reactions. Talk to each other about how you are feeling – voicing your reactions, anxieties or fears usually helps, whilst keeping them inside you tends to allow them to grow.
If you feel that you are not coping, there are a range of professional support services available. Families can obtain these services via their family doctor, hospital social worker or Maternal and Child Health Service. If you are not sure how to go about this, please give us a call and we can assist you.
Get in touch with Family Support at Down Syndrome Victoria by phoning 9486 9600 or email firstname.lastname@example.org and take a look at our resource links in the right hand column.
“I wish I had known three years ago what I know now. How good it could be… In those bleak, dark days in the hospital, when her diagnosis was given and received amid awkwardness and apprehension, one of my biggest fears was that I would not like her, would be ashamed of her. Never…’
Kathy Evans – ‘Tuesday’s Child’