Living with Down’s syndrome

For parents of children with Down’s syndrome

Giving birth to a child with Down’s syndrome can be extremely challenging and difficult to get your head round, especially if you haven’t had screening tests and the condition has come as a surprise. If you have a baby with Down’s syndrome, you will be offered advice and help from a counselling service and put in touch with your child’s care team, which is made up of several health professionals; the care team will help to monitor your child’s health and encourage them to develop and gain a degree of independence.

If you need additional help or you are struggling to come to terms with the idea of having a child with Down’s syndrome, you should try to talk to somebody about this and get help; your first port of call should be your GP; they will be able to arrange counselling for you. If you don’t want to talk to somebody you know, you can get in touch with charities including the Samaritans and the Down’s Syndrome Association. If you want to talk to people in a similar situation, you can use the internet to chat to people on forums or attend group sessions, which are run by charities. If you need advice or help with caring for your child, you should speak to your GP, your social worker or another member of the care team.

It is understandable to feel confused, upset and angry and you should take time to get your head around the situation; as your child grows up, try to have a few days off to catch up on sleep, have some time to yourself and do things you want to do but can’t usually do because you are looking after your child; ask a friend or relative to look after your child for the day.

For children with Down’s syndrome

It can be difficult growing up with Down’s syndrome; you may feel that people stare at you because you look slightly different and you may feel a bit left out when you first go to school or playschool; if you are being bullied, tell someone about this and get help. If you are struggling to keep up with the work, ask your teacher for extra help. Your teachers should give you the support you need to try new things, get involved in school life and pursue hobbies and interests.

You may find it useful to meet up with other children with Down’s syndrome; charities like the Down’s Syndrome Association often run events and activities where you can join in the fun and meet new friends.

If you want to talk to somebody but don’t want it to be someone you know, you can call charities like Childline and the Down’s Syndrome Association at any time.

For adults

There is a huge amount of help and support out there for adults with Down’s syndrome; everything from financial support to adult education classes is available, so make sure you know what you are entitled to and what advice and support is out there for you. There is also help available if you are planning to live independently or find a job. There is a huge amount of information available on the DirectGov website, or you can get in touch with your local authority.

If you have trouble getting around, you can ask your social worker for details of local transport services and mobility aids.

If you need emotional support or you want to talk to somebody, there are a number of people you can talk to; your GP can help you with medical and mental health problems and you may wish to consider having a course of counselling, which they can arrange for you. If you want to talk to somebody anonymously, you can get in touch with charitable organisations, including the Down’s Syndrome Association.