Sotos Syndrome Australasia Association

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Sotos Syndrome Australasia Association Sotos Syndrome Australasia strives to be a voice for those living with Sotos Syndrome & community

https://sotos.org.au/wp-content/uploads/2023/06/Sotos-Syndrome-Summary-Page-1.pdf

Your voice belongs in every conversation about your life. 💚As children with Sotos syndrome grow into teenagers and adult...
01/10/2026

Your voice belongs in every conversation about your life. 💚

As children with Sotos syndrome grow into teenagers and adults, their voice, preferences and choices should continue to be part of the decisions that affect them.

As parents and carers, we spend so much of our time supporting, advocating for and keeping our children safe. As they grow, another part of that journey is finding ways, wherever possible, to create opportunities for choice, independence and self-determination.

That will look different for every person. For some, it might mean making big decisions independently. For others, it might mean expressing a preference, making everyday choices, communicating “yes” or “no”, or being supported by people who know them well to make their wishes understood.

There is no one way for self-advocacy to look.

What matters is continuing to find ways for the person themselves to be heard, included and at the centre of their own life.

My Life. My Voice. 💚

SOTOS FACT 💚There is no single Sotos trajectory.While people with Sotos syndrome may share certain characteristics, ther...
28/09/2026

SOTOS FACT 💚

There is no single Sotos trajectory.

While people with Sotos syndrome may share certain characteristics, there is no one pathway that tells us how an individual will develop, learn, communicate or participate in the world around them.

Development can happen at different times, in different ways and across different areas. A person may need significant support in one area while showing incredible strengths in another. Their needs may also change over time.

This is why comparing one child or adult with Sotos syndrome to another can only tell us so much. A diagnosis gives us important information, but it doesn’t give us a roadmap for someone’s future.

Instead, we can stay curious about the individual in front of us; recognising their strengths, understanding where support is helpful, and giving them the time, opportunities and environments they need to develop in their own way.

Same diagnosis. Individual journey. 💚

NDIS changes: staying informed 💚We know the NDIS is changing, and we also know that for many individuals and families, h...
23/09/2026

NDIS changes: staying informed 💚

We know the NDIS is changing, and we also know that for many individuals and families, hearing about changes to the Scheme can bring plenty of questions about what this might mean for them.

Some changes have already commenced, while others will be introduced gradually over the coming months and years. Importantly, there are also areas where the details are still being developed.

At Sotos Syndrome Australasia, we encourage our community to stay informed, ask questions and seek information from credible sources rather than feeling like you need to make sense of every announcement on your own.

A great resource to bookmark is Children and Young People with Disability Australia (CYDA). They have created a really helpful, regularly updated guide called What’s changing with the NDIS and when?, which breaks down what has already changed, what is happening next and what is expected in the future.

CYDA – What’s changing with the NDIS and when?⁠

We’ll also continue to share useful information and resources with our Sotos community as more details become available. 💚

💚 Meet AvaFive years ago, met Ava, a young girl with Sotos syndrome, and gave her the opportunity to share a little abo...
15/09/2026

💚 Meet Ava

Five years ago, met Ava, a young girl with Sotos syndrome, and gave her the opportunity to share a little about herself, her family, and the way she sees the world around her.

It’s a beautiful opportunity to hear directly from Ava, in her own words, and to get to know the person beyond the diagnosis.

We encourage our community to visit and follow Special Books by Special Kids and watch Ava’s full interview on their YouTube channel.

A big thank you to Special Books by Special Kids for creating spaces where children and families can share their experiences and stories. 💚

📷 Image and story credit: Special Books by Special Kids

Advocating for your child can sometimes feel overwhelming, especially when you’re trying to navigate systems, understand...
09/09/2026

Advocating for your child can sometimes feel overwhelming, especially when you’re trying to navigate systems, understand your child’s rights, or simply find the right language to explain what they need.

But advocacy doesn’t mean you have to know everything or have all the right words from the beginning. There are some great tools available to help parents and carers build their knowledge and confidence along the way. 💚

Advocating with and for your child: A workbook for parents and carers is a free resource developed as part of the Disability Standards for Education resources.

It provides practical information to help families think through their child’s needs, prepare for conversations with schools, understand reasonable adjustments, and become more familiar with the language used when advocating within education.

For our Sotos families, we know that you often become incredibly knowledgeable about your child and their individual strengths, needs and ways of engaging with the world. Having the right information and language behind you can make it that little bit easier to ensure your child’s voice, needs and rights are understood.

A really worthwhile resource to save, download and come back to when you need it.
https://www.education.gov.au/disability-standards-education-2005/resources/advocating-and-your-child-workbook-parents-and-carers

💚 Thank you to everyone who joined us for our Sotos Syndrome Day Event.It was such a meaningful opportunity to come toge...
06/09/2026

💚 Thank you to everyone who joined us for our Sotos Syndrome Day Event.

It was such a meaningful opportunity to come together as a community, share stories and experiences, and strengthen the connections that sit at the heart of Sotos Syndrome Australasia.

A very special thank you to our incredible Board Member, Heather, who spoke so openly and vulnerably about her experiences as a mother of a child with Sotos syndrome. We are incredibly grateful for her willingness to share the realities, reflections and learnings that have shaped her family’s journey.

And a huge thank you to Jess, a remarkable 18-year-old young woman who is currently navigating her final year of school and all that comes with it. Jess generously shared her honest reflections on growing up with Sotos syndrome, offering an insight into her experiences, perspectives and what matters to her.

Hearing directly from people with Sotos is incredibly important. No two experiences are the same, and creating space for people with Sotos to share their own stories, in their own words, helps us build a community that genuinely values lived experience and ensures those voices are at the centre of the conversation.
Thank you, Heather and Jess, for trusting us with your stories, and thank you to everyone who joined us, listened, shared and connected.

💚 Sotos. Stories. Lived experience. Connection.

We look forward to creating many more opportunities for our community to come together, learn from one another and amplify the diverse voices and experiences within the Sotos community

💚 Sotos Syndrome Awareness DayToday, we celebrate individuals with Sotos syndrome and the families, friends and communit...
06/09/2026

💚 Sotos Syndrome Awareness Day

Today, we celebrate individuals with Sotos syndrome and the families, friends and communities alongside them.

Sotos Syndrome Awareness Day is an opportunity to increase understanding and visibility of this rare genetic condition, while recognising something equally important: every person with Sotos is an individual, with their own personality, strengths, interests, experiences and story.

Today is about awareness, connection and celebration, amplifying the voices and experiences of people with Sotos and the families who know and love them.

To our Sotos community across Australasia: today, we celebrate you. 💚

💚 Just two days to go!This Sunday, we’re bringing our members together to mark Sotos Syndrome Awareness Day with a relax...
04/09/2026

💚 Just two days to go!

This Sunday, we’re bringing our members together to mark Sotos Syndrome Awareness Day with a relaxed online Member Connection Session.

One of our Board members, who brings lived experience as a mum of a child with Sotos syndrome, will share some of her family’s story before opening up an informal space to connect with others in our community.

Come along to listen, connect, or share your own experiences if you feel comfortable, there’s absolutely no expectation to speak or share.

📅 Sunday, 6 September
🕐 7:00 pm AEST | 5:00 pm AWST
💻 Online via Microsoft Teams

Members - check your registered email address for your invitation and Teams link and you're junk mail, just incase! If you have changed your active email address please let us know, so you don't miss out.

We’d love to see you there . 💚

💚 A special event for our Sotos communityTo mark Sotos Syndrome Awareness Day on 6 September, we’re bringing our members...
31/08/2026

💚 A special event for our Sotos community

To mark Sotos Syndrome Awareness Day on 6 September, we’re bringing our members together for a relaxed online Member Connection Session.

Facilitated by one of our Board members, who brings lived experience as a mum of a child with Sotos syndrome, the session will be an opportunity to hear her family’s story and connect with others in our community.

There’ll also be space to chat and share your own experiences if you feel comfortable, but there’s absolutely no expectation to share. You’re just as welcome to come along, listen and connect.

📅 Sunday, 6 September
🕐 7:00 pm AEST | 5:00 pm AWST
💻 Online via Microsoft Teams

Already a member? Keep an eye on your inbox - we’ll be sending the invitation and Teams link to your registered email address shortly.

Not yet a member? We’d love to welcome you to Sotos Syndrome Australasia. Join our community to take part in this and future member events. 💚

Did you know? A significant change has recently come into effect for early childhood education and care services across ...
25/08/2026

Did you know? A significant change has recently come into effect for early childhood education and care services across Australia. ♿️

From 1 August 2026, the Disability Standards for Education 2005 were extended to most early childhood education and care services, helping to clarify services’ existing obligations under the Disability Discrimination Act 1992 (DDA).

At its heart, this is about ensuring children with disability have equitable opportunities to access and participate in education and care; including services identifying barriers and making reasonable adjustments where required.

To support the sector, ACECQA has released a fantastic suite of free Disability Rights and Obligations resources, including a Team Meeting Package designed to help educators unpack disability discrimination, reflect on their current practice and identify opportunities for continuous improvement.

If your child attends an early learning service, or you know someone who works in early childhood education and care, this is a great resource to share with them.

For families within our Sotos community, strong understanding of disability rights within early childhood settings can make a very real difference to children’s experiences of inclusion, participation and belonging.

👉 Explore and share ACECQA’s Disability Rights and Obligations resources with your child’s service.

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Suite 3/23 Haynes Street, Kalamunda
Perth, WA
6076

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