Determination and independence
2020 has been a challenging year and the frustrations of lockdown have affected most people in our communities. In Sonia’s words, normally “Freddie doesn’t let anything get in his way”, however, Covid-19 is quite a formidable barrier to life as normal and even the indomitable Freddie has had to stay inside for weeks of shielding. Sonia, Freddie’s mother reflects that for a time during lockdown he was “quite depressed as he missed his friends at school” and that “it was really quite boring for him being locked up with older people like us.” However, Freddie’s thirst for life inspired him to practice the skills that would strengthen his independence once lockdown restrictions came to an end. One fun endeavour that Freddie has pursued during the months of strict social distancing, has been to practice on his Smile Smart System (SSS) powerchair.
Like many other teenagers around the country, Freddie’s daily schedule is normally packed full of classes, appointments and travel. Never a dull moment! So finding time to practice your powerchair skills at home can be tricky. It’s ironic that when outside life is so limited, there could suddenly be an opportunity to practice physical independence. The ever-ebullient Freddie and Sonia did just that, and despite the wider frustrations of the coronavirus, Freddie and his powerchair have managed to put in some seriously fast lap times around his house and garden.
Using a Smile Logbook
Inspired by his new Smile Logbook that supports communication between the users, families, support teams and teachers, Freddie has been working hard to develop his head switching accuracy. Although speed is fantastic fun, it is not truly the most important part of practicing in your powerchair, just as with driving a car, it is the accuracy of how and where you are driving that is crucial.
In his logbook, Freddie was able to work out with Sonia and his PA Ayan both what his daily and long-term aims were and then chart progress towards them. Practicing each day with Sonia or Ayan, Freddie has worked towards goals that have a motivational purpose, such as ‘driving down the garden path on my own’ or ‘going to watch the TV on my own after tea’; these are realistic and tangible objectives that have a strong sense of personal reward connected to them. The concentration and effort required by users like Freddie to achieve these aims are great and so being able to write those objectives down on paper in a logbook, marks these achievements with the acknowledgment that they merit. Most importantly Freddie himself has enjoyed the process of deciding upon new goals and reaching them.
He has been working towards driving steadily on the freedrive setting along his pathway at home by maintaining gentle control from his starting point to avoid bumping into the walls. Inside his home, Freddie uses line-following so prevent any collisions while he moves around the house from room to room, so by contrast the driveway is a good place to experience controlled free driving in another home environment. One of Freddie’s favourite way to blow off steam is to go to the local park in his powerchair and zoom about on the grass with free drive, where he is totally liberated to drive in an open space and feels like his hero Lewis Hamilton, without any chance of bumping into anyone or anything.
It is a great privilege and fantastic fun for the Smile team to watch young children like Freddie discover and develop their physical independence through a Drivedeck at school, or their own personal Smile powerchairs. Freddie is now on his second Smile chair having finally grown out of his paediatric chair, a progression that was inconceivable to Sonia when Freddie was very young. Sonia recalls her OT advisor Carol Thompson suggesting a Smile powerchair and at the time, Sonia thought that the notion of her severely disabled son being capable of driving a powerchair and using head switching was ludicrous. Sonia recounts that “I genuinely thought she had lost her marbles to suggest a Smile smart powerchair but the first time I saw him using a head switch I realised that he could do so much more than I had ever realised was possible if he was given the right resources. He really could do what he wanted to.”
Freddie’s fulfilling life is made possible thanks to his fantastic support team made up of family and two personal assistants, Antony and Ayan, and also his progressive school, Linden Lodge in Wimbledon where they are long time users of Smile’s Drivedeck facilities, including extensive Smile tracking throughout the school buildings and grounds. Freddie is also fortunate to have a long-time friend at home too, in fellow Chelsea Football Club fan, 20-year-old Charlie, who comes over and spends time with him at home or takes Freddie into the high street for a dip into shops like Zara, to indulge his passion for fashion and accessories. Freddie likes to look sharp and has a keen interest in keeping up with all the latest trends, which Sonia finds highly amusing as she was never interested in fashion herself, but this is just another way that Freddie shows everyone what a strong, independently minded young man he is.
Finding the best AT
In medical terms Freddie is severely disabled, he has Cerebral Palsy with Spastic Quadriplegia, he has no capacity in his four limbs and is registered blind, but with the right assistive products and services, Freddie lives a fulfilling life packed with friendship and fun.
Assistive products like powerchairs and the various components that make driving a powerchair possible are a constantly evolving process that reflect the users growth and personal development, particularly in teenagers like Freddie where their growth patterns can be dramatic. The seating is arguably the most important factor in comfort and success for powerchair users and during lockdown, this specialised service has been slowed considerably. This is a shame because young people like Freddie who want to spend as much time as possible in their powerchairs are limited by how long they can sit in them due to the comfort of their seating. Hopefully, as restrictions are eased, the assessment and manufacturing of specialist seating and many other assistive products will speed up again and Freddie will receive the larger seat that he now needs.
“I never really thought that Freddie would grow into a fully grown man, I always imagined him remaining a little boy, so to look at him now and what he can achieve and with such a strong personality is quite simply remarkable,” says Sonia, “I never think that it’s not going to be possible anymore because I always remember that through organisations like Smile, I have learnt to allow the specialists to suggest their ideas and always believe that something is possible.”
“Like Freddie, Roger [Dakin] never lets anything stop him, he is always trying to make things possible with his can-do attitude,” says Sonia.
In Freddie’s Own Words
What do you like about your powerchair? It help me move. How do you feel when you move? Happy. What kind of chair would you like in future? Chair like car. What is your wish? Go out by self!
A big thank you to Sonia and Freddie for sharing their experiences of 2020.