Guidance for Caring for a Child with Down Syndrome

Highlights

• Down syndrome is a chromosomal condition that is present at birth.
• People with Down syndrome have mild to moderate intellectual disability and some health issues.
• Children with Down syndrome can go to a mainstream school.
• If you’re caring for a child with Down syndrome, you might face some different challenges than other parents.

In This Article

• What is Down syndrome?
• How do I care for my baby with Down syndrome?
• How does Down syndrome affect my child’s growth and development?
• How do I prepare my child for school if they have Down syndrome?
• What support is available for families living with Down syndrome?

What is Down syndrome?

Down syndrome is a common chromosomal condition causing mild to moderate intellectual disability. It is a congenital anomaly (difference present at birth).

People with Down syndrome can also look different from other people and have some health issues.

How do I care for my baby with Down syndrome?

Before the birth

You might find out your baby has Down syndrome before they are born. It’s important to talk with your doctors and midwives about what this means. They will help you plan your birth and inform you about what might happen after your baby is born.

After your baby is born

Your baby will need some tests to check their:

• Heart function
• Hearing
• Vision
• Overall health

This might mean you and your baby need to stay in the hospital a little longer than usual.

Most babies with Down syndrome can breastfeed. Your doctor and midwife will talk to you about anything special you might need to do.

As with any newborn, your baby will most need your love and care.

How does Down syndrome affect my child’s growth and development?

Each child with Down syndrome will have a different experience. Some children will require more support than others. It is important to provide care and support from a young age to help your child reach their full potential.

Once your child is home, regular check-ups with your family doctor are important. Your doctor will provide you with advice on how to manage any medical concerns. They can also refer you to specialists.

Children with Down syndrome are likely to have some delays with crawling, walking, and talking.

You can help your child develop by getting early intervention such as:

• Physiotherapy – to help your child gain the muscle tone needed for crawling and walking.
• Occupational therapy – to help with fine motor skills, coordination, and sensory issues.
• Speech therapy – to help develop effective communication skills, speech and language development, and support for feeding and swallowing difficulties.

Talk to your child’s therapists and learn how you can work together to help your child.

Developing communication skills

You can also help your child’s communication skills develop by:

• Listening, singing, and talking.
• Kissing, cuddling, laughing, and playing games that involve touch and movement.
• Use of exaggerated facial expressions to have fun together.

You can ask your speech therapist about learning key word signs. The use of hand gestures to communicate with your child can help language development.

Helping your child to communicate will help prepare them for school and other social activities.

How do I prepare my child for school if they have Down syndrome?

You should speak to the school about how they can best support your child. Local Down syndrome associations can also help educate staff when your child starts school.

The transition to school can be difficult for any child. You can help them adjust and get ready for school by:

• Visiting the school.
• Speaking about school openly and positively.
• Practicing getting them dressed.
• Encouraging them to carry their own school bag.
• Helping them make some friends before their first day.

Experiencing support in a school environment can help your child feel accepted. Growing up around other children with disabilities can also help other students to be more inclusive.

What support is available for families living with Down syndrome?

Raising a child with Down syndrome can be very rewarding, but also very challenging.

Support is important for the parents and families of a person with Down syndrome. Try to build a strong support network of family, friends, community groups, and service providers.

It can help to connect with other families that have a child with Down syndrome. They can be a great source of support. Local Down syndrome associations can provide information services that include:

• Information and advice about Down syndrome.
• New parent packs.
• Home visits.
• Information about local support groups.
• Online support groups for you and your family.
• Workshops and webinars.
• Translated resources in other languages including Chinese, Arabic, Hindi, and Vietnamese.

Feeling supported and informed will put you in the best position to care for your child.

Financial support

If you have a child with Down syndrome, you might be eligible for financial assistance. This can help you access support networks and early intervention services.

Tools And Assistance

Down syndrome organizations provide support, information, and resources for people with Down syndrome and their families.

Key Word Sign organizations can help you find a workshop to learn signing with your child.

Call your local Down syndrome organization for more information and resources.