Transcript of Athan's story video

Athan's Story transcript

My name is Selena Lucas and I am a single mum of two beautiful boys. A full-time carer, looking after both children, but primarily Athan who is nine and who has a very rare brain condition called polymicrogyria bilateral generalised.

And what that means for Athan is, profoundly disabled both intellectually and physically.

So, the challenge is increased into getting him to school, the logistics of getting him to school, you know with oxygen tanks, suction machines, medication.

Supporting him on the way, if his seizures in the car or seizures on the way home.

And then the suggestion came up of well hey look we think we've got a solution.

Let's try a telepresence robot, put it in the classroom to represent Athan and we'll live stream back home on his iPad. Before we had it, I mean I didn't see a lot of Athan and now I see him every day. We see him for every lesson mostly, so I get to build a better connection with Athan, get to know him a lot more and he gets to know his peers.

We try to get the students to feel as if they all have a place and that they're all friends and

then we talk about them being friends, so this is where all of their socializing

goes on with friends. So that's been really important.

You know who that is...That's Oscar! That's Oscar. He is playing the drum as well. So that's his connection with the community.

That gives him everyday purpose. And that's been life-changing, for Athan.

It's been pivotal. We've gone from attending two or three days per term to dialling on almost every day. When he wakes in the morning, he's waking with a purpose.

So we can say to him in the morning: We're going to go to school today? Mummy's going to pick you up. You know he goes into his chair and as we're putting him in his chair he's starting to smile. There's anticipation that he knows that he's going to be connecting into school. I mean how awesome is that? I can't provide that at home...

See Athan's reaction to be part of it, to hold his musical instrument at home and shake it and hear the music therapist talking to him. The engagement, it's a wonderful, wonderful, wonderful, opportunity.

It's worked so successfully that we're gonna start using it with another student who hasn't been able to attend school for a number of years because of being so ill and so fragile.

So, it's just opening up a world that we hadn't realized existed.

And for the students, it's just bringing them to school and they, you know, they can't do that otherwise. It's great.

It's increased his quality of life.  It's more joy, more social connection, more education opportunity. You can't measure that. How does someone measure that?

It's wonderful. It has changed not one life like Athan, this could be changing a huge volume of children's lives.

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