If you've recently found out that your baby has Down syndrome, you may be experiencing a whole range of emotions. There's no right or wrong way to react. And it’s important to know you're not alone in your situation.
Many new and expectant parents find it helps to be in contact with other parents of children with Down’s syndrome. Positive About Down syndrome (PADS) is a support website written by parents of and people with Down’s syndrome. You can read about the reality of living with Down’s syndrome today, as well as being able to contact families similar to yours. You can read Melissa's story here.
Positive About Down syndrome (PADS) can also put you in touch with a local support group. Support groups know first-hand how you might be feeling and can share their experiences with you. They might be able to offer you advice and talk you through any fears or concerns you might have.
The Down’s Syndrome Association can help you connect to other families who have a child with Down’s syndrome too (Down’s Syndrome Association, 2019). You can search for more information about Down’s syndrome and about your local support group though the Down’s heart group page.
Down’s syndrome support groups are vibrant, diverse communities. These groups offer fun family activities, including support for siblings, extra professional input and peer support from birth to adulthood.
What professional support is available?
There are many different professionals who will be able to show you how to help your child to make progress, including physiotherapists for gross motor skills, such as sitting up, crawling and walking. Speech and language therapists can also offer advice on weaning and developing you child’s communication skills (Department for Education, 2010).
A home visiting teacher or Portage service is available in some areas. They promote development through play (Department for Education, 2010).
What can I do to support my child’s development?
You can do so many things to help your child with their learning and development. And remember that not everything you do with your baby needs to be educational or ‘meaningful’.
Things for you to try 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 things your child's looking at and is interested in.
- Giving your child the opportunity to mix with other children in a nursery or playgroup.
- Encouraging your child to be as independent as possible from an early age with things like feeding and dressing, getting ready for bed, brushing teeth and going to the toilet.
- Playing games to teach new words. A Portage worker or speech and language therapist can give you some ideas.
(Department for Education, 2010; NHS, 2017).
Am I entitled to financial support with a child with Down’s syndrome?
Most children with Down’s syndrome will qualify for Disability Living Allowance. You might also be entitled to Carer’s Allowance and your family might receive additional financial support through Tax Credits.
The charity Contact can advise you on any benefits you are entitled to, as well as help you with form filling (Contact, 2019). Contact also has information about different forms of support, such as social care, benefits and education for people with Down’s syndrome. You could check sources of information in the Down’s Syndrome Association page too.
This page was last reviewed in July 2019.
Our support line offers practical and emotional support with feeding your baby and general enquiries for parents, members and volunteers: 0300 330 0700.
Make friends with other parents-to-be and new parents in your local area for support and friendship by seeing what NCT activities are happening nearby.
Call the Down’s syndrome Association helpline on 0333 121 2300 for advice or the parent lead support organisation Positive About Down’s syndrome.
Read 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 and on Down’s syndrome education international.
Contact. (2019) For families with disabled children. Available at: https://contact.org.uk/advice-and-support/benefits-financial-help/
Department for Education. (2010) Early support: Information for parents Down’s syndrome. Available at: https://webarchive.nationalarchives.gov.uk/20130321052927/https://www.education.gov.uk/publications/eOrderingDownload/ES13-2010.pdf
Down’s syndrome association. (2019) For families and carers. Available at: https://www.downs-syndrome.org.uk/for-families-and-carers/
Malak R, Kostiukow A, Krawczyk-Wasielewska A, Mojs E, Samborski W. (2015) Delays in motor development in children with Down syndrome. Med Sci Monit. 21: 1904-1910. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4500597/
Myrelid A, Gustafsson J, Ollars B, Anneren G. (2002) Growth charts for Down’s syndrome from birth to 18 years of age. Archives of Diseases in Children. 87:97-103. https://adc.bmj.com/content/87/2/97
NHS. (2017) Living with Down’s syndrome. Available at: https://www.nhs.uk/conditions/downs-syndrome/living-with/