MyTime – the how, what’s and whys

September 7, 2020
Community and Inclusion
By Kindred

MyTime – the how, what’s and whys 

A parents reflection of MyTime peer groups.

Being a parent of a child with a disability, many of you know no days are the same. It’s true when they say it is a roller coaster ride. It can be overwhelming at times, especially early on and as we navigate new phases such as starting preschool and school or getting an NDIS plan. For many of us, these things are not as straight forward as they are for other families. But thankfully, whatever it is we are experiencing, because disability is actually not uncommon – 1/20 children – there is a parent who is either going through it with you or has been down this path before. This is why, for me, groups like MyTime are essential. 

Kindred run MyTime groups ONLINE. These groups are very casual and facilitated by experienced parents of children with a disability.

They are a vital part of me investing in my well-being. I log on, every week or so, to have a chat, and usually feel as if a weight has been lifted at the end. I come off those calls armed with new tips, knowledge and sometimes just an outlet to chat with others who understand how confusing, chaotic, busy and beautiful life with our kids can be! 

They are held over Zoom, which means they are private and there are only a few simple musts. One of them is for your first zoom call to keep your video on. This just means that the group gets to know you and forms a level of trust, but once you have been going for a while, this relaxes, and you can join without a video if you prefer. Two, zero dress code. I’ve joined with my business clothes on, wine in hand, ready to relax and chat. I’ve also joined in my PJs, lying in bed with my headphones in just listening to others.

You can contribute as much or as little as you like – some days I’ll chat away, others, I’ll just want to listen to and support others. 

The conversations often have a theme around them. This could be sharing self-care techniques, or emotional regulation or mindfulness. But these are pretty loose themes and the conversations can veer into all sorts of directions depending on the needs of the group. 

Some weeks the chats can be more thoughtful and reflective, many weeks I find myself laughing and the conversation is quite light – or a mixture of both. 

Sometimes I join thinking I don’t have much to talk about or a particular worry to share and then find myself at the end speaking quite passionately about something. One thing for sure, I am always glad when I have made an effort.

People drop in and out of the calls, sometimes interrupted by our children’s demands or pop on after it’s started – which is quite common when your child just won’t get to sleep! But there is always a couple of people on there chatting away. 

I’ve made great friends and connections through MyTime. It was vital during COVID and though we may get Zoom fatigue, this is one appointment I never tire of. 

by Heather Cox

Heather is a mum of two girls, Erica (7) and Arianna (4) – the youngest of which was diagnosed with Sotos Syndrome. Heather and her husband AIberto, are proud parents, Iiving in the Inner West of Sydney. Heather is passionate about inclusion and making life better for people with disabilities and their families. She is particularly passionate about rare diseases and has helped set up and is an active committee member of the Sotos Syndrome Association of Australasia. She has big dreams for both her daughters and hopes that the world wiII be a better, more accepting pIace in the future for aII unique famiIies.


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