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 andmore independent lives.

Emotional impact

In some cases, it may not be apparenta baby has Down's syndrome until after they are born. Giving birth can be exciting, scary and tiring, and finding out 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 outyour 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 understandingof 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, andthere are many people who have experience of 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.

What helps will depend on the skills your baby has trouble with, but 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 the things your child is 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 activities such as feeding and dressing, getting ready for bed, brushing teeth, andgoing to the toilet
• playing games to teach vocabulary and word recognition a home visiting teacher or speech and language therapist 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 professionalsexperienced in caring for children with Down's syndrome will be able to help you with any difficulties you or your childare 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 interventionprogramme can include:

• speech and language therapyto 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.

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 on0333 121 2300 for advice.

Education

Increasing numbers of children with Down's syndromeare educated in mainstream nurseries or mainstream schools with support. However, 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 and talk to the staff about how they might meet your child's special educational needs.

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

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 any benefits you may be entitled to.

Read about financial help for parent carers .

Regular health check-ups

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

From 18, they are usually the responsibility of adult services.

Between the ages of 16 and 18, the child will start a "transition" of services.

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

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.

Although it may not be possible to live completely independently, increasing numbers of adults with Down's syndrome are leaving home and living in theircommunities 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. An occupational therapist can offer practical advice to help make independent living easier.

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.

Making decisions

Someone with Down's syndrome mayhave the capacity to make some decisions (for example, to decide what items to buy at the local shop), but lack capacity to make other decisions (for example,making decisions about complex financial issues).

Where someone is judged not to have the capacity to make a specific decision (after a capacity assessment), that decision can be taken for them, but it must be in their best interests.

For more information, read What is the Mental Capacity Act? .