Sean

10:18pm - Easter crafts

09:50am - Visiting the chicks

Janet wants the chicks to be a surprise for everyone and Sean arrives in the hall with the chicks balanced on his chest. Some of the TAs react in surprise and several of the other children come up to look at the chicks perched on Sean. Janet asks Sean if he would like to watch the film 'Hop' later on, but he doesn't seem convinced that it isn't a 'kids' film. Janet also massages Sean's legs to help make him more comfortable.

10:46am - Break time and oxygen

The primary school classroom is noisy with upset children - apparently they've also had a bad morning. Vicky fetches the chicks and they place them on Sean's chest for him to look at. The three chicks are called Steve, Bob and Clive. Steve is a bit frisky and so they leave just Bob and Clive to nestle on Sean's shoulders. The primary school class settles down and an air of calm fills the room. Vicky and Janet decide that the chicks are helping Sean to relax and so they postpone the language therapy session for today. When its time for Sean to head back to the main hall, the primary school teacher suggests taking the chicks with him.

It's break time and Janet is setting up Sean's oxygen mask. There is a small liqued gauge at the bottom of the mask - once this is depleted the oxygen session is finished. The tank makes a loud hissing noise and a pale smoke escapes from the mask. The chicks are a little startled by the steam and noise and move down onto Sean's lap.

09:45am - Language therapy

11:10am - 'The Iron Man'

Rather than going to Easter crafts, Sean will be having a language therapy session in the morning. Vicky, the language therapist, describes how Sean can get frustrated relying on visual aids and that she tries to use fun and lighthearted activities as a way of helping him to adjust to using them. Janet tells Vicky that Sean has had a rough morning so far and so Vicky suggests they go to see some Easter chicks in the primary school building.

Break time ends and Sean returns to his classroom. The class are placed in a semi-circle and Sean is set up with his oxygen mask again. The teaching assistants go on their break and Ms F sits down with the class to read 'The Iron Man' by Ted Hughes. Ms F begins by asking the class if they can remember where they were up to in the story. Before Ms F can begin the story it is time for Sean to leave for his physiotherapy appointment. Ms F promises to read it with him another time.

09:22am - In the classroom

11:35am - Physiotherapy

A short while later Sean arrives in his classroom looking much calmer. He's dressed all in blue today, including a blue Chelsea shirt. Some of the teaching assistants joke with him about supporting Arsenal and he smiles. Over the course of the next fifteen minutes the rest of Sean's class arrive and Ms F, the class teacher, explains that they will be doing Easter crafts in the hall today. Ms F uses picture aids with some of the class.

Sean's physiotherapist, Susanne, asks which parts of his body he is happy for her to massage today. The chicks are still with Sean and Susanne says that she's happy to work around them. Some relaxing music is put on in the background and Susanne focuses on different parts of Sean's body, massaging his arms, legs and torso. Janet takes some pictures of Sean's chicks to send home to his mum. Susanne tells Sean that his arms feels more limp and relaxed today and that she thinks the physio sessions are helping him.

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09:02am - Arriving at school

A Day in the Life of

12:32pm - Lunch time

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Back in the main hall its lunch time. Another TA takes over looking after Sean and sets him up with a tube feed. Sean becomes increasingly uncomfortable and the TAs take him through to hygiene. He's gone for quite awhile and in the meantime the other students finish their lunch and are taken back to their classrooms. Just after 2pm, Sean and Janet return. Janet tells me that today has turned out to be particularly difficult for Sean.

Sean

It's a Thursday morning and the school is preparing for a special day of Easter crafts. Sean's minibus arrives just after 9am. He arrives quite distressed and i'm told that this isn't uncommon as his journey to school can sometimes be uncomfortable.

One of the members of staff crouches next to Sean and rubs his legs. She then wheels Sean into the school to find his assistant, Janet, who takes him to hygiene to help him calm down.

13 years old

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2:50pm - Painkillers

Introduction & Navigation Information

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This multimedia document represents a 'day in the life' of Sean (aged 13 years) and was recorded on Tuesday 3rd April 2014. The day was recorded by a researcher as part of the 'Face 2 Face' project, using a range of sound, visual and written materials. Sean's name and other personal details about his life have been anonymised.

'Face 2 Face' is an ESRC funded research project (2013-14), jointly organised by the Universities of Sussex, Brighton and the Open University. You can find out more about the project here:

http://www.sussex.ac.uk/esw/circy/research/currentresearch/face2face

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It's the afternoon break when Sean returns to the classroom. Janet sorts out a tube and liquid solution to feed Sean some pain killers. Sean begins to heave and there's a rush to find a bowl from under the sink. Janet sits reassuring Sean and holds a bowl under his chin. Elsewhere in the classroom one of Sean's classmates is listening to YouTube videos of Robbie Williams, Olly Muirs and Naughtyboy in the background.

Navigation information:

You can explore this multimedia document either in 'presentation' mode - which presents a chronological account of the young person's day - or by moving around the document by scrolling and zooming with your trackpad or touchscreen.

You can interact with multimedia content along the way by zooming in on pictures and playing video content. Audio clips (where available) will play automatically on each slide.

Key:

2:57pm - Checking emails

Sean looks a little pale and Janet suggests opening the windows. Sean and Janet go to sit at one of the computers. He's expecting an email from a former school carer who has gone traveling but it hasn't arrived yet. The room has a lethargic feel and one of the teaching assistants comments that 'everyone's exhausted'. Janet and Sean use the computer to print off some photographs of the chicks for Sean's mum. The girl listening to YouTube videos plays 'Lalala' by Naughtboy on repeat and sings along to the chorus. Sean has his oxygen mask put on again.

3:04pm - Home time

Whilst Sean has his oxygen Janet fills in the 'home book' for the day. Shortly afterward it is home time and Janet helps Sean into his zip-up tracksuit top. Once his oxygen session is finished Sean's legs begin to cramp again and Janet massages them for him. Ms F begins to dismiss the class. She lets them go one at a time by playing a game - if their name begins with the sound she is making they can go. Sean has a little more colour in his cheeks and Janet takes him to his minibus to go home.

Below you can find out more about Sean by learning about some of his 'favourite things', including: his caps collection, sports cars, his iPad and his electronic photo frame.

Baseball caps and scarves

One of Sean's most prized possessions is his collection of baseball caps and scarves. According to staff at his school, Sean has such a big collection that he's able to wear different ones on each day of the week. On the day of the interview Sean is wearing a matching set of chequered cap and scarf.

Sean's

Favourite Things

Digital photographs and Skype

Sean has a large collection of digital photographs which he stores in a digital photo frame in his room. Sean's digital photo frame contains pictures from past events, including trips to football stadiums and spending time with his family.

Sean records pictures and videos on his iPad, including events at school. He also uses it to Skype his former school care assistant who is currently travelling to different parts of the world. In addition to regularly Skyping they also send emails to each other.

Football and Ferraris

Sean's most prized caps include a blue Chelsea football one and a red Ferrari one. Sean is a big fan of Chelsea football club and has been to see them play at Stamford Bridge. Sean is also into sports cars and has kept a number of toy car models from when he was younger. A couple of years ago Sean got to ride in a Ferrari. The staff at Sean's school say he is a bit of 'local celeb' and that he has appeared in local newspapers on a number of occasions.