Where Can Parents of Children with Down Syndrome Find Support?
- joyc856
- Jul 7
- 6 min read
Raising a child with Down syndrome takes courage, but it shouldn't be lonely. If you're looking for emotional support, parent groups or trusted organisations in and around Centurion, you’re at the right place. Let's help you find people who understand your journey.
Why Get Support as a Parent of a Child with DS?
One conversation with the right parent can do more for your heart than a hundred Google searches. ChatGPT may be your friend, but nobody truly gets it like another parent who has faced what you’re facing.
Someone who understands the sleepless nights, the endless appointments and the questions that keep you awake after everyone else has gone to bed. I get it, really. That was me eight years ago. Brave was diagnosed with Trisomy 21 when he was already 9 weeks old.
We were dropped into a stressful experience no one had prepared us for. We didn’t know anything about Trisomy 21, and we felt isolated and alone. The reality of raising a special needs child is that some support can be truly healing for your heart and give you strength to take up the tasks and efforts that go into it.
Let’s look at everything that’s available to you as a parent of a child with Down syndrome today.
Financial Support for Parents of Kids with Down Syndrome
Care Dependency Grant (R2,400)
Apply for a care dependency grant at SASSA. You will need to fill in forms and take your identity documentation along with these forms to a SASSA branch. If you complete the process successfully, you can get R2,400 each month. This can really make things easier financially.
Chat with us for help with the steps in the process, the forms, and experiences from other mothers.
Disability Tax Rebate (SARS)
If you are a taxpayer, you can use the ITR-DD form to claim back a percentage of your tax from SARS each year. First, your doctor or specialist must fill in the ITR-DD form. Next, you must keep all your disability-related receipts, including diapers, soft foods, special needs schooling, fuel to get to therapies, therapy costs, educational toys, etc.
When it is time to file your income tax return, put the total amount spent into the box that says “disability”. SARS will then ask for your ITR-DD form and the receipts. If you want help with this, you can talk to us or contact Stratfin and let them know you’re friends of Brave Life.
Parent Support Groups (WhatsApp, Socials & Events)
The Brave Community (Centurion + South Africa)
If you’re not on here yet, you are invited. Message us to request to join. Any parent whose child has Down syndrome can join.
In the community, we have a mom chats group, a heart prayer group, a Dads Group and more. On here, you’ll find out about free events and support Brave Life is offering in the community. We’re focused on emotional support and making a space for everyone to belong without politics and drama.
You’ll often find moms and dads supporting one another, praying together, spending time together, sharing photos, and talking about the realities of this journey in an open and supportive way. When a parent faces a loss, we come together around them as a community. When a parent celebrates, we do it together. When one child goes for surgery, we are all there for them. You don’t have to do this alone.
The DS Support Group (Centurion & Moms from everywhere)
The DS Support Group was started by a local mom in Centurion, and for a few years, Brave Life hosted their groups in this community, too. The difference is that this group intentionally focuses only on parents and not organisations, aside from Club21. They want to give parents an advert-free, organisation-free, stress-free place to connect.
DS Support with Sharon (Johannesburg)
Sharon’s group has been around much longer than ours. She welcomes parents from all over Gauteng, and her WhatsApp group is more focused on Joburg. They share events and articles and sometimes parents talk about their experiences and advice.
The Lucky Few Group (Cape Town)
Even though I don’t live in Cape town, I’m on here. They’re very open and welcoming and you’ll find kindness and local events on here. Because of their openness, we have built bridges between the coastal community and our Gauteng folks that feel like lasting friendships.
Club21 Support Groups
As the only Down syndrome focused local school, Club21 puts in a lot of effort to offer parents places of connection and support. Their heart2heart gatherings and other events are open for all parents and not only focused on those who attend their school.
Contact us if you’d like to get connected into any of these communities.
Other Places of Connection for Families & Kids with Down Syndrome
Jesus People Church (Centurion)
We want to especially mention Jesus People Church as a safe space for children with Down syndrome and disabilities. They host Brave Life in their offices and support the projects we run.
As a mom of a child with Down syndrome and autism, Sunday is one of my favourite days thanks to them. My son is included and accepted by his peers, and he enjoys the environment so much in spite of his sensory challenges. Their services happen at the Centurion Theatre every Sunday at 9am.
They also offer individual care, where you can meet with pastors and receive support and prayer. The church also feeds people on Sundays, and if you’re in desperate need, they also distribute food and clothing donations to the community.
DSSA / DSAP (National / Pretoria)
The Down syndrome association of Pretoria has its offices in Centurion. Along with Down syndrome South Africa, they run a list of age-divided groups. On these groups, you will mostly find events and raffles being shared, along with monthly resources like colour-in sheets, calendars, and newsletters.
The Down syndrome association of Pretoria focuses heavily on equipping older children to transition from school to a work environment, on inclusive schooling, and on self-advocacy.
Psychology Support for Parents of Kids with DS
If you feel that your mental health is suffering, that you might be facing caregiver burnout or you’re on your last thread, please message us. We have been building connections for a while in the community and we have some psychologist friends who can offer you different kinds of support in these situations.
Resources and Freebies for Parents of Little Ones with Down Syndrome
The Brave Bag
When your little one is born with Down syndrome, it can come as a surprise. It can feel isolating and there is a time of grieving. Many medical providers don’t quite deliver the news gently, and sometimes our friends and family step back or don’t understand. This is where the Brave Bag comes in. It is a free gift full of baby items, information about the condition, and leaflets for providers.
Allow us to celebrate the arrival of your blessed little one. If your baby is under 12 months old and was born with Down syndrome in South Africa, you qualify for a free Brave Bag. Pop us a message so we can get one to you. If your child is aged 1 - 10, they may qualify for a toddler kit.
Jack’s Basket
Like the Brave Bag, Jack’s basket has a book, a vest, a blankie, and lots of resources, sent in a basket to parents with a new diagnosis for free internationally. They are located in America, but Brave received his own Jack’s basket when he was 10 months old, so you can get it in South Africa, too.
To request your basket, fill in the forms on the Jack’s Basket website.
The Resource File
Our personal journey with Brave has led us to gather resources, scientific articles, charts, lists, and information about the condition. In 2023, we compiled this into one file. It has since evolved into a more comprehensive resource that you can explore digitally for free or print. All the information is information from reputable organisations, scientists, doctors, and so forth.
For example, the official Down syndrome growth charts that doctors should use for your baby’s checkups are in the back, coming from the CDC. The official checklist of tests that your doctor should do based on timeline is also in the file, coming from the American Academy of Pediatrics.
You can read it for free or contact us for a printed version: Down Syndrome Support File (FREE) And if you have questions that aren’t answered in the file or you find a glitch, let us know and we’ll update and fix the file. It’s a work in progress.
Targeted Nutritional Intervention
One of the most transforming resources for Brave, personally, has been realising we can use nutrition and supplements to influence the overexpressed genes somewhat and downregulate the long-term impacts of the extra chromosome. This information comes from the Trisomy 21 Research Foundation.
At first, learning the science behind what the true impact of Trisomy 21 is felt overwhelming and scary. But with time, I realised I had to put in the effort to understand so that I can help my child.
And it certainly has changed his life. This is something you’ll find Brave Life talking about often. If you want to learn more about it, we have a group called TNI Protocol that you can join, and we are also happy to meet up and chat, run a session with teams, and educate.
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