Nine-year-old Kip has a rare genetic condition known as Phelan-McDermid Syndrome (PMS) – he has a significant learning disability, very limited verbal communication and experiences high anxieties – and is also Autistic.
Kip is “happiest and most expressive when he’s outdoors” according to him mum, Suzy, and likes to be active and participating in whatever is going on.
“Kip was diagnosed with PMS and Autism when he was about three-years-old, but I’d felt since birth that something was different about Kip. He has such a beautiful, fun and affectionate soul – he enjoys walking in the countryside, pottering about in the garden, painting, helping with the household chores , bramble cutting, recycling and litter-picking. He needs one-to-one support most of the time and this can be very demanding for the family, he can also experience distressed behaviours when situations are difficult or overwhelming for him or he is misunderstood.
“He can be very anxious and we’ve found that supporting him to be involved in activities – he has a lot of energy and enthusiasm – really helps to keep him connected and engaged with us.”
His family have always enjoyed going on bike rides together and previously used a trailer that Kip could be towed in, but as Kip grew too big for it they’d lost the ability to cycle altogether. They then borrowed a regular tandem from a local charity, for a few months, which gave Suzy the motivation to see if there was a more specialised tandem that would better suit Kip’s needs now and for the longer term.
Since receiving a new adapted tandem bike, it’s given Kip and his family a whole new lease of life!
“Kip finds it very overwhelming and confusing being behind people, he needs to be at the front of the bus or in the front of the car to see the direction of travel, so a regular tandem – where the child sits unsecured at the back – was a real struggle for him. It’s not that surprising really, it can’t be much fun staring at someone’s back! So, he’d repeatedly hit himself and unpredictably jump off the regular tandem and obviously with him being behind you it was difficult to pre-empt this distress.
“With the adapted tandem bike he loves sitting at the front and being able to see the view forward. He feels much more like he’s part of the journey and that he’s cycling himself, which has been great for his safety, confidence and sense of independence.
“As he is secured into the comfortable seat he can safely let go of the handlebars to clap his hands, point which direction he’d like us to go and makes lots of happy noises – it’s very clear that he’s enjoying the experience and the motion. And he’s quick to instruct us, shouting ‘move’ or ‘wait’ to tell us what he wants!
“When we’re out on the bike, people are really interested in it and often approach us to ask about it – I think this gives Kip a sense of pride and he enjoys the attention that he’s getting!”
The tandem bike has a back-rest and seatbelt for his safety and his set of pedals can be switched on and off – Kip is not able to pedal himself but he can either ‘join in’ with our pedalling or just be pedalled by us if he gets tired. The bike also comes equipped with an electric assist.
“It’s very reassuring for us to have more visibility of Kip as well and know that he’s safely strapped in, as it was always a worry he’d try to get off when we used the trailer or regular tandem. With Kip at the front it’s much better for communication too – we can easily hear the words Kip is saying as well as see the gestures he uses to communicate, he can also hear us better.
“Having the electric assist is a complete god-send too, it’s very hard work making it up any hills without it, and as Kip grows even taller and heavier it will be a total necessity!
“It’s been brilliant and exhilarating to be able to get out and about on bicycles as a family again. There’s very few things that Kip and his 15 year old brother, Miller, are able to properly connect over, but cycling is one of the activities they can share and enjoy equally together. Thank you very much Children Today!”
You can watch Kip enjoying his tandem trike below!