Answering Our Top Questions for the Month About Down Syndrome Support and Resources
Where to find community support for Down Syndrome families in South Africa?
Brave Life offers local and countrywide community support for parents of kids with Down syndrome. Drop us a message and we’ll add you to our community.
We also have community events, and we offer education and advocacy to parents, teachers, schools, professionals, and any organisations that want to learn more about how to support kids with Down syndrome in their area.
Find a place to belong, identify, share, ask, cry, and get real support in our Brave Community Support Group. Whether you are in KZN or Gauteng, Cape Town or anywhere in South Africa, you’re welcome here.
What Key support services are available for Down syndrome families in South Africa?
We see it as our job at Brave Life to connect parents, educators, and organisations with key support services available in their area for their child with Down syndrome. Send us a message if you’re looking for support in a specific area or for a specific need for your child with Down syndrome, and we will connect you with resources and key support:
Inclusive education guidance
Early intervention assistance
Referrals to other professionals and services
Parent and family support
Counselling and emotional support
Social work and outreach
Training and awareness talks
What is the best way to get advice on raising a child with Down Syndrome in South Africa?
In our experience, lots of people have advice, and they’re very willing to share. But advice doesn’t always prove true or reliable. The question is whether the advice will really be useful to you. Is it actually true or is it someone's opinion?
One of your most valuable sources is your own instinct as a parent. It can often give you a deep inner feeling if something needs to be addressed. And you can equip yourself as a parent with our free resource pack and support from other parents who are walking the journey.
You don’t have to do this alone. We gathered all the evidence-based truths, tips, science, and resources into one file that you can explore online, and it is free forever. Or you can just message us too. We are here for you, and we've already burned our fingers and made the mistakes so you don't have to.
How to connect with other parents of Down Syndrome kids in Centurion?
Did you know that Brave Life is one of the most active Down syndrome support groups in the country? And our home base is Centurion. That means we’re running events, social groups, and lots of fun activities for families all the time, and you can join in.
Connect with parents in our community on our WhatsApp groups and in person at our events. You can walk the journey with other families on the same path.
If you are a new parent facing a new diagnosis, we would love to meet you and support you. Just pop us a message and we will do a new parent support visit with you to help welcome you to the community and give you free resources to make the journey easier.
What are the challenges faced by children with Down Syndrome in South Africa?
We believe that the biggest challenge parents face early on is a lack of support and a lack of access to accurate and beneficial information.
Many parents are not given the right information early on to allow them to make decisions about their child’s intervention and health strategies to support better outcomes. For example, doctors and nurses often don’t know how to deliver the diagnosis with care and connect the parent with next steps.
Many parents and healthcare workers are ignorant of major risks and the latest research in supporting kids with Down syndrome, such as the need for a sleep study within the first six months (a relatively new finding in science). There is a big gap between the reality of a child with Down syndrome’s biochemistry and what doctors and specialists are willing to discuss.
As a parent, I myself did not get the right information early on. Everyone seemed to have an agenda, and it cost my son a lot healthwise. People love to tell me whether or not to vaccinate, which therapies to do, how to breastfeed, what formula to use, and I had advice coming from every side.
Turns out, a lot of what applies to a typical child can be harmful to a child with Trisomy 21. I learned the hard way. Now, my mission is to give parents the information that so many people are reluctant to talk about, so that they can also experience the big positive impact it has on their child.
Other parents don’t have to make the mistakes I did, if they are given access to information about what is happening in their child’s body and how it affects their brain, learning, health, development, and future prospects.
Where can I find inclusive playgroups for children with Down Syndrome in Centurion?
Our first playgroup was started in 2019 and called the Brave Playgroup. This Centurion-based playgroup was specifically connected to parents of babies/children with Down syndrome and talked about on the Good Things Guy website. Today, our approach to playgroups is more organic. We connect with other parents on WhatsApp, and parents get together whenever it suites them. There are hundreds of parents from around South Africa, and there’s often something happening at someone’s house or a Brave event you can participate in.
Where can I get emotional support for parents of children with special needs in Centurion?
As parents of special needs kids who are also pastors, we are especially equipped to offer parents emotional support. If you’re dealing with stress, anxiety, depression, or you just need immediate emotional support, you can contact us today. We offer pastoral care, connection with parents who can support you through difficult moments, and we also have connections with professionals who can support you in a time of need or crisis.
How to access care programs for babies with Down Syndrome in Johannesburg?
Brave Life is designed to support parents in Johannesburg with access to free resources and by connecting parents to care programs in their area. Please send us a message and we will gladly assist you. We can help answer questions like:
Where to find early intervention for babies (0–3 years)?
Which therapies are available (speech therapy, physiotherapy, occupational therapy, feeding support)?
How to access services (self-referral vs clinic referral)?
Are there waiting lists, costs, or funding options?
How to connect to a Gauteng/Jozi-area early intervention outreach and support programme?
Where can I find therapy services for children with Down Syndrome in Gauteng?
There are so many options available to parents in Gauteng. Some services are at your own cost, some are covered by medical aids, and some are free. Ask us for our trusted practitioner list to see who our network of parents trust.
None of these people are paid or sponsored. They make the list by being truly amazing with our kids. One example is Yovanke Torrente in Johannesburg, who does orthotics and helmets for our kids with consistent love and kindness.
Are there any events for Down Syndrome awareness in Centurion?
Yes! You’re in the right place to join a Down syndrome awareness event. Check out our events page to see when our awareness fun runs, galas, breakfasts, and get togethers are. Our Down syndrome Christmas event is coming up soon. If you would like to get involved with an event or host an event, just contact us. We are always open for more fun and community.
much love,
Joy Cronje
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