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.
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 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 of how it may affect your child's life, as well as your own.
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 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.
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:
- 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, and going 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.
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, 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.
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.
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 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.
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 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:
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.
Teens with Down's syndrome
Until the age of 18, the care of children with long-term health conditions is the responsibility of child health and social care services. 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.
Read more about work and disability.
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. 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
Many people with Down's syndrome enter loving relationships, although they may need guidance and support when it comes to things like 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.
Someone with Down's syndrome may have 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?.
Page last reviewed: 14/01/2015
Next review due: 14/01/2017