Down's syndrome

Advice for new parents of a child with Down’s syndrome

Symptoms

How to help children and young people with Down’s syndrome

Self-care

Medical support for people with Down's syndrome

Medical treatments

Children with Down's syndrome are likely to have a learning disability. Some adults will need regular care. Others will be more independent.

You can help a child with Down's syndrome by communicating clearly with them, giving them lots of encouragement and sticking to set daily routines.

People with Down's syndrome may need medical help with their heart, hearing and vision. They may also benefit from physiotherapy and speech therapy.

What it's like to have a child with Down's syndrome

Children with Down's syndrome are likely to have some level of learning disability. It's not possible to know how this will affect them.

Like any child they will:

• have their own personality
• learn at their own pace
• have things that are important and unique to them

As they get older, they may need help with daily activities, such as:

• cooking
• cleaning
• shopping
• going to appointments

They may also:

• need extra support with speech, language and communication
• be more likely to get seriously unwell, and take longer to get better, than people without Down's syndrome

Things you can do to help a child with Down's syndrome

You can try these things to help with their development.

Do

• praise them when they learn something new

• speak clearly and calmly so they can learn from you

• play, sing songs and read books together to help with sounds and words

• try showing them how to do something instead of just giving instructions – this can be easier to follow

• try ways to help them communicate, such as  Signalong or Makaton

• try to set routines so they feel more settled – for example, for getting up and at mealtimes

• encourage them to be healthy and active

• look out for changes in mood or behaviour – they may not be able to tell you if something is wrong or if they're unwell

• take them for regular hearing, eyesight and health checks

Don't

• do not talk down to people with Down's syndrome – treat them like anyone their age

• do not just talk to parents or carers, talk directly to people with Down's syndrome

• do not use outdated and offensive language when talking to people with Down's syndrome

Information

Find out more

• Signalong for parents (Signalong: the communication charity)
• Find out about Makaton (Makaton)
• Find activities near you (DSActive)

Common health needs in people with Down's syndrome

It could help your child to see:

• a speech and language therapist for help with speaking
• a physiotherapist for help walking, if your child has low muscle tone
• an optometrist or hearing specialist for help with vision and hearing
• an occupational therapist for help with development

Heart conditions

Doctors will check your baby's heart soon after they're born.

This is because about half of all children with Down's syndrome are born with a heart condition (congenital heart disease).

If your baby has a heart condition it may get better on its own. But sometimes surgery is needed.

Speak to a children's doctor (paediatrician) to find out the next steps for your baby's care.

Help with speech, language and communication

Children with Down's syndrome might need some help speaking.

A speech and language therapist can help by:

• checking if your child needs help with their speech
• suggesting things you can do to help your child with their speech

Speak to a children's doctor (paediatrician), health visitor or GP who can refer your child to see a therapist.

Help with vision and hearing

People with Down's syndrome will need to have their sight and hearing regularly checked.

They may need to:

• wear glasses
• have a hearing aid
• see a specialist for help if they have a condition called glue ear

Speak to a paediatrician, health visitor or GP for more information.

Getting unwell with infections

People with Down's syndrome are more likely to have a weakened immune system (the body's defence system against infections).

This means they can become seriously unwell if they get an infection like pneumonia or flu.

So it's important to have all the recommended NHS vaccinations.

It can take longer for children and adults with Down's syndrome to get better when they're unwell. They're also more likely to need medical help and may need to go to hospital more often.

It can be difficult to tell when a baby or toddler is seriously ill, but the main thing is to trust your instincts and get medical help if you're worried.

You know better than anyone else what your child is usually like, so you'll know when something is wrong.

Getting support if you care for someone with Down’s syndrome

If you need help, or just want someone to talk to, there's lots of support available.

Speak to parents and families

It can help to speak to other parents and families who know how you're feeling.

You can do this by:

• getting in touch with people on forums and social media
• going to a support group – ask your midwife or health visitor about local support groups