Down's syndrome - Living with Down's syndrome

Having Down's syndrome, or having a child with the condition, can be challenging at times. But with help and support, most people are able to have healthy, active and more independent lives.

Emotional impact

In some cases, it may not be apparent a baby has Down's syndrome until after they are born. Giving birth can be exciting, scary and tiring, and finding out that your baby has Down's syndrome can be unexpected and alarming.

Some families accept their baby's diagnosis of Down's syndrome quickly, while others need time to adjust.

If you have recently found out your child has Down's syndrome, you may feel a range of emotions, such as fear, sadness or confusion. It is quite common for parents to feel overwhelmed or have negative thoughts after the birth of their new baby.

There is no right or wrong way to react. Finding out more about the condition will give you a better understanding about how it may affect your child's life, as well as your own.

Support groups

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

Many parents find it reassuring to talk to other parents. The Down's Syndrome Association can put you in touch with another family who can share their experiences with you, offer you advice and talk through any fears or concerns you may have. They can also provide information about all aspects of living with Down's syndrome.

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 a number of things you can do on a daily basis to help your child with their learning and development. What helps will depend on the skills your baby has trouble with, but things that may be useful include:

• use play to help your child learn – for example, show them how to play with their toys and use toys to help encourage them to reach, grasp and move
• name and talk about the things your child is looking at and is interested in
• give your child the opportunity to mix with other children
• encourage your child to be as independent as possible from an early age with activities such as feeding and dressing, getting ready for bed, brushing teeth, going to the toilet
• play games to teach vocabulary and word recognition – a home visiting teacher or speech and language therapist (see below) can give you some ideas

However, it's important to find a balance between "special" activities and normal things families do to ensure your child grows up within a happy, loving and active family environment.

As with all new babies, at times they will need to fit in with what is going on around them and the needs of other family members. Not everything you do with your baby needs to be educational or meaningful. Any fun activity with 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 is having.

For many people this will involve an early intervention programme, which 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 also be advised about things you can do at home to help your child learn and develop, and you'll have the opportunity to find out about your child's condition and meet other families in similar situations.

Your paediatrician can give you further information about early intervention. You can also call the Down's Syndrome Association helpline on 0333 121 2300 for advice.

Education

Increasing numbers of children with Down's syndrome are educated in mainstream nurseries or mainstream schools with support. However, individual needs vary and some parents feel that a special school will be most suitable for their child.

It might help to visit some mainstream and special schools in your local area and talk to the staff about how they might 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.

Regular health check-ups

Children and adults with Down's syndrome need regular check-ups to monitor their health because certain health problems are more common in people with the condition. Read more about the complications of Down's syndrome.

These check-ups will usually be with a paediatrician (a doctor who specialises in treating children) at first, although a GP may carry them out as your child gets older.

The health check-ups may involve:

• hearing and vision tests
• measuring height and weight
• blood tests to check for thyroid problems
• checking for signs of heart problems

If your doctor spots a potential problem, they can refer you to an appropriate specialist to talk about any treatment or support that may benefit your child.

Adults with Down's syndrome

Further education and employment

Many young adults with Down's syndrome pursue further education. Some also gain employment, usually on a part-time basis, but this will depend on the individual. Read more about work and disability.

Living independently

With help and support, many adults with Down's syndrome are able to lead an active and fairly independent life. Although it may not be possible to live completely independently, increasing numbers of adults with Down's syndrome are leaving home and living in their communities with support.

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

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

Read more about disability and independent living.

Relationships, sex and fertility

Many people with Down's syndrome enter loving relationships, although they may need guidance and support when it comes to things such as contraception.

Men and women with Down's syndrome tend to have a reduced fertility rate. This does not mean they cannot conceive 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 physical and mental demands of a newborn baby.

If one partner in a couple has Down's syndrome, there is around a one in two chance of each of their children having Down's syndrome too. The risk of miscarriage and premature birth is also greater in women with Down's syndrome.