Living with - Down's syndrome

With help and support, most people with Down's syndrome are able to have healthy, active and more independent lives.

New parents

If you've recently found out your baby has Down's syndrome, you may be feeling a whole range of emotions, including fear, joy, sadness, or confusion. There's no right or wrong way to react.

It's important to remember you're not alone in your situation. Thousands of people in the UK have Down's syndrome. There are also lots of people who have experience of supporting and caring for people with the condition.

Lots of new parents find it reassuring to talk to other parents. The Down's Syndrome Association can put you in touch with another family who have a child with Down's.

They can share their experiences with you, offer you advice, and talk through any fears or concerns you may have.

Read more information for new parents on the Down's Syndrome Association website.

Helping your child

Most children with Down's syndrome have difficulty learning new things and take a bit longer to reach developmental milestones, such as walking and talking.

There are various things you can do to help your child with their learning and development.

Things that may be useful include:

  • using play to help your child learn – for example, show them how to play with their toys, and use toys to encourage them to reach, grasp, and move
  • naming and talking about things your child's looking at and is interested in
  • giving your child the opportunity to mix with other children
  • encouraging your child to be as independent as possible from an early age with things like feeding and dressing, getting ready for bed, brushing teeth, and going to the toilet
  • playing games to teach new words – a home visiting teacher or speech and language therapist can give you some ideas

It's important to find a balance between "special" activities and all the normal things families do.

As with all new babies, at times they'll need to fit in with what's going on around them.

Not everything you do with your baby needs to be educational or meaningful. Any fun activity with the family can be beneficial.

Professional support

A number of different professionals experienced in caring for children with Down's syndrome will be able to help you with any difficulties you or your child are having.

For many people this will involve an early intervention programme. This is a special programme that aims to help a child with learning disabilities develop, as well as provide support to the family.

An early intervention programme can include:

  • speech and language therapy – to help with any problems communicating or feeding
  • physiotherapy – to help with any muscle weakness or movement difficulties
  • individual home teaching programmes

You'll be advised about things you can do at home to help your child learn and develop. You'll also be able to find out about your child's condition and meet other families like yours.

For more information and advice, read about children and young people's services and assessing your care needs.

You can also call the Down's Syndrome Association helpline on 0333 121 2300 for advice.

Financial support

You may feel you need to give up work or decrease your hours so you can spend more time caring for your child.

If this is the case, it's worth finding out about benefits you may be entitled to.

Regular health check-ups

Children and adults with Down's syndrome need regular check-ups to monitor their health.

These check-ups will usually be with a paediatrician (a children's doctor) at first. Your GP may do them as your child gets older.

The health check-ups may involve:

If your doctor spots any possible problems, they can refer you to a specialist.

Read more about the complications of Down's syndrome.

School and your child

Lots of children with Down's syndrome are educated in mainstream nurseries or schools with support.

But individual needs vary, and some parents feel a special school will be most suitable for their child.

It might help to visit some mainstream and special schools in your local area. Talk to the staff about how they would meet your child's special educational needs.

Read more about special educational needs and children with a learning disability.

You can also find out more about education on the Down's Syndrome Association website.

Teens with Down's syndrome

Until the age of 18, child health and social care services are responsible for the care of children with long-term health conditions like Down's syndrome.

From 18, it's usually the responsibility of adult services. Between the ages of 16 and 18, your child will start a "transition" to adult services.

For more information, read about transition planning for disabled young people.

Adults with Down's syndrome

Further education and employment

Lots of young adults with Down's syndrome pursue further education, and many go on to work.

Read more about work and disability.

Living independently

With help and support, lots of adults with Down's syndrome can lead an active and fairly independent life.

Although it may not be possible to live completely independently, some adults with Down's syndrome leave home and live in their communities with support.

Adults with Down's syndrome often move into property owned and staffed by a housing association. Staff can provide different levels of support depending on the person's particular needs.

If necessary, a social worker may be able to help with finding accommodation. An occupational therapist can offer practical advice to help make independent living easier.

Read more about disability and independent living and supported living services.

Relationships, sex and fertility

Lots of people with Down's syndrome have loving relationships, although they may need some support when it comes to things like contraception.

Men and women with Down's syndrome tend to have lower fertility. This doesn't mean they can't have children, but it does make it more difficult.

Those who decide to have children will usually need specialist guidance and support to help them cope with the demands of a new baby.

If one partner in a couple has Down's syndrome, there's around a 1 in 2 chance of each of their children having Down's syndrome, too.

The risk of miscarriage and premature birth is also higher in women with Down's syndrome.

Media last reviewed: 20/12/2018

Media review due: 20/12/2021

Page last reviewed: 30/04/2017
Next review due: 30/04/2020