Sam* (all names have been changed) is 22. He loves swimming, going on walks, being driven around in his school bus and looking at photos. He’s been a termly boarder at St Piers School since 2014 - his mum says she feels like their world and Sam’s life started the day he arrived.
Sam is non-verbal so we talked to his mother about five things that either Sam owns or she does, that she thinks tells a story about Sam and moments in his life.
‘He’s acquired self-esteem and pride. He’s learning independence on his level.’
Q: An object that reminds you of a special day
A: Sam's swimming bag and life jacket
When Sam is home we go to a private swimming pool. When he sees the bag, he knows he’s going. He’s got freedom when he’s in the water. He’s like a little mermaid. His body relaxes. Because of the way he walks, he’s got a very wide gait, and because he’s got no sense of danger, you’re always overprotective that he can’t be close to a road, he can’t do this or that. Whereas when he’s in the water, you can be at the other end of the pool because he just floats like a champagne cork. In the water he’s in control - when he wants to swim up and down, he swims up and down.
Q: An object that's always in Sam's pocket wherever he goes
A: His VNS magnet
It’s a thick magnet and you swipe it across the VNS that’s implanted in his chest. A VNS is a bit like a pacemaker but that’s attached to the vagus nerve and sends a trigger to the brain to stop the seizure if it can without using emergency medication. It’s not for all children and young people, but it’s been the most incredible thing for Sam as it just lets him get on with things. I’ve only ever had to use the magnet once as the VNS stops the activity within seconds. He doesn’t know how to use the magnet so someone else has to hold it and carry it for him at all times.
Q: An object that you can see right now that makes you smile
A: Photos
This is one of my favourites believe it or not. It just shows someone walking along. It doesn’t say epilepsy. It doesn’t say anything but that he’s happy. This is a young man who doesn’t do transitions very well, but he’s transitioning from his classroom to I’m presuming the horticultural area at St Piers. If you’d have met my son before he came to Young Epilepsy, he was a blank screen. Whereas now the personality and the way he does communicate and to see him walk around campus means the world to me as I can see the pride in him. The pictures are all on a white board in his room and he likes looking at pictures of himself and people he loves. Sam likes the pictures he has of the alpacas at the onsite farm.
Q: An object that helps him relax at the end of each day
A: Watching the Tweenies on his TV
Sam only likes the musical Tweenies. Come the end of the day he will take his top off, which is telling the staff he’s going to bed. Then he gets into bed, rolls himself in his duvet like a hotdog, watches his TV and falls asleep. That’s his way of saying the day’s come to an end.
Q: An object that represents somewhere you’d like Sam to be in the future
A: A home that’s as good as where he is now
When he first started at St Piers school, and he went into his official term time residential house, there was a member of staff who gave Sam a nickname. And every time he said that nickname, Sam smiled. So it’s become his name on campus, it gave him his identity and where ever he goes he will be known by that nickname.
Sam thrives at Young Epilepsy. He’s acquired self-esteem and pride. He’s learning independence on his level. When he’s home during the holidays, he’s recharging his batteries, but he’s always ready to go back.
In July 2022, he will have to leave St Piers as his time has come to an end after eight years so wherever he goes next, he will always have the foundation of what Young Epilepsy has provided for him. I’m looking for an adult residential placement version of Young Epilepsy with the same wonderful staff and campus, St. Piers school and College have set the bar high. We will always be appreciative and so grateful to all at Young Epilepsy for enabling Sam to be as happy, independent and healthy as he is.
* all names have been changed to protect identities.
