Prader-Willi syndrome Ben embraces independence and proves he’s a quality guy!
When Ben was ready to take his first steps to adulthood, he had lots of goals he wanted to achieve. But he was born with Prader-Willi syndrome, a rare genetic condition affecting around 2,000 people in the UK. Because of his condition, he needed additional support from our team at Esmer House, to move forward with his life.
Until just a couple of years ago, Ben lived at home with his parents. His condition meant he needed their support to manage his weight, emotions, and behaviours. Because Ben’s Prader-Willi syndrome is quite severe, it also affects him physically, so he needs support getting around and doing daily activities.
Ben’s elderly parents supported him with these needs since he was born. But as Ben grew, they struggled to support his evolving needs as he entered adulthood.
Ben recognised his parents wouldn’t be able to continue supporting him as they once had done. With lots of goals and ambitions in mind, he knew he needed support to reach them.
Deciding to move out of his family home, Ben knew he needed to find a provider who would offer him the specialist support he needed.
Taking his first steps towards independence, Ben was nervous. A faithful family man, he’d never imagined leaving his childhood home. With the added restrictions of the pandemic, he feared finding the right provider might be a long, uphill struggle.
That all changed when Ben found Voyage Care.
Ben’s best interests
Growing up in Derbyshire, Ben attended a mainstream primary school and enjoyed a quiet childhood. Even though he had additional needs from birth, he didn’t receive special education until he went to high school.
Entering adolescence, Ben’s Prader-Willi syndrome needs began to present differently. As he navigated the tricky stages of being a teenager, he rode the emotional rollercoaster that most teenagers do. Since Ben also has autism, the peaks and falls affected him more. He started presenting challenging behaviour and life became more difficult for him and his parents.
With his best interests at heart, Ben’s parents sought respite support. This offered him an opportunity to engage in meaningful activities and make new friends outside of school. It also gave his parents time to rest.
Once Ben left school, he attended a local college and continued going to respite. Still living at home, his time at college offered him a chance to further his education, make friends and live a normal life. Ben’s autism means he likes routine and predictability. Respite continued to support his preference for a familiar routine, helping to manage some of his behaviours.
As he blossomed further into adulthood, his life and needs were changing faster than his parents could cope with. With Ben’s college graduation looming, they knew his taste for independence meant he would naturally want to go on to achieve more. They wanted this for him too and were conscious their evolving needs would stop him from chasing his dreams.
Deep down, Ben knew his life was progressing along a path his parents didn’t have the strength to follow him down. He needed to find a specialist support provider to help him fulfil his ambitions and pave the way to a bright future.
Sourcing specialist support
In 2020, Ben entered his last year at college. Thinking about his future, he made the tough decision to move out of his parents’ home. As a loving son, this wasn’t an easy decision for him to make. But he knew it was time to embrace his independence.
Just as he began searching for a specialist support provider, Ben found his first obstacle. The pandemic hit, and he was unable to visit different providers.
Unsure where to turn, Ben stumbled across Voyage Care. Thrilled to discover our specialist Prader-Willi syndrome support, he dug deeper. Ben quickly learned that our specialist Prader-Willi syndrome service Esmer House was close to his family home. Keen to make this his future home, he jumped at the chance to make an enquiry!
Lockdown meant he couldn’t visit the home in person, but his support team frequently met up with him outdoors. Socially distancing, they got to know each other in small stages. Once Ben felt comfortable with them, his decision was made. He was moving to Esmer House!
Since Esmer House had only recently opened, this was a momentous occasion for Ben. Becoming one of the home’s first housemates was exciting to him. With such a big change ahead, he still couldn’t help feeling insecure and nervous.
Even though Ben had previously attended respite day services, he’d never lived away from his parents. The nature of his Prader-Willi syndrome means he experiences anxiety in new environments.
Moving out of his parents’ home was a daunting process. Fortunately, his new team at Esmer House were expertly trained to support him with all aspects of Prader-Willi syndrome, including mental health and emotional wellbeing.
Together, they took the first steps on Ben’s journey to independence and supported him to transition to Esmer House.
A perfect start
When Ben got his official moving date, he had mixed feelings. He was anxious about leaving his parents but, deep down, he knew it was the right thing to do.
As he arrived at Esmer House, he gingerly made his way to the front door. Soon, his nerves were calmed as he heard cheering and laughter. Coming from his warm, loving family home, these soothing sounds of happiness reassured him this was the right place for him to live out his dreams.
As the door opened, Ben realised what the cheering and celebrations were for – it was one of his new housemate’s birthdays!
A delightful surprise, Ben made his way in and soon got into the party spirit. The birthday party transformed into a double celebration, welcoming Ben to the Esmer House family!
As he did the rounds getting to know everyone, Ben’s face beamed when he recognised one of his new housemates – someone he went to college with! This chance encounter instilled confidence in him. Ben instantly felt at home.
A bubbly individual who loves to share a laugh and a joke with others, this was the best start Ben could have hoped for.
Although his transition seemed seamless, this was just the first day. Ben’s support team knew it would take time for him to truly adapt to his new home. They’d be on hand round-the-clock to support him while he navigated his newfound independence.
Ben’s unique needs
Like most people in the Prader-Willi syndrome community, Ben has a wide range of additional needs, including an increased appetite. Because his brain doesn’t produce hormones to control his appetite, Ben is prone to overeating. This puts him at risk of excessive weight gain. He can also be obsessive about food and hide it in his room.
Ben’s needs around appetite and food are made more complex by his heightened sense of smell. This leads him to smell things that aren’t edible, mistaking them for things he can eat. For example, he is prone to smelling and picking off his arm hair, mistaking it as something he can eat.
At Esmer House, Ben’s team empower him to effectively manage his needs with person-centred support. Supporting his needs around food and appetite, they collaborate with him to create meal plans and stick to a regular eating schedule. With Ben at the heart of decision-making, he makes choices about what he eats. His support team guide him to make healthy, balanced choices.
Alongside his issues with food, Ben presents some challenging behaviour. His dual-diagnosis of Prader-Willi syndrome and autism means he sometimes struggles processing emotions and communicating thoughts and feelings. This can leave him feeling frustrated, which he channels by picking at his skin. Leaving him with little scabs on his body, this is problematic for Ben as wounds and bruises take longer to heal in people with Prader-Willi syndrome.
By getting to know Ben as an individual, our support team identified this behaviour as a sign he’s stressed or bored. Fortunately, Esmer House is a vibrant household, offering Ben and his housemates the opportunity to engage in a wide range of exciting daily activities. There’s always lots for Ben to get involved with and he particularly likes group activities and day trips to new, interesting places.
So, his team worked with him to develop a weekly activity planner, ensuring he does all the things he enjoys. This has supported Ben to manage feelings of boredom and stress, boosted his emotional wellbeing, and minimised his challenging behaviour!
Achievements and changes
A year after Ben moved into Esmer House, he left college. Adapting to the changes of moving out of his parents’ house, he faced a new challenge. His days had revolved around going to college and he suddenly found himself without a structured routine.
Understanding how changes to routine affected Ben’s autism, his team knew this might trigger boredom and stress. They needed to engage him with new, meaningful activities to replace the time he used to spend at college. Using a person-centred approach, our team already had an insight into Ben’s interests and ambitions.
Working with Ben to establish some goals for the future, they outlined what was most important to him. Ben had expressed a desire to lose some weight, secure a part-time job, become more mobile and independent, and take a holiday. With this sturdy framework in place, they set to work. Together, with Ben, they designed his future.
Firstly, the team supported Ben to lose some weight and get more mobile. They understood how this would boost his confidence and widen other opportunities for him. Ben has scoliosis, which means his spine twists and curves to the side. Before joining Esmer House, this affected his ability to walk, and he relied on his wheelchair to get around.
Ben used to receive physiotherapy at the college he attended. Now he’d left, he needed to find other ways to keep active and improve his mobility.
With encouragement from his support team, he started taking short walks in the local community. Having scoliosis also impacted his breathing, so gentle exercise was the best option for Ben.
With his wheelchair always available for him to rest, Ben steadily increased the lengths of his walks, improving the strength in his back and legs. Now, he freely walks to a variety of places and rarely needs to use his wheelchair!
Improving his mobility has been Ben’s biggest achievement since joining Esmer House. By simply setting this goal and taking a gradual approach to achieving it, his life’s changed in many ways.
From improving his mobility, Ben’s ticked off another goal from his list. With all his extra walking, he’s naturally lost weight and can now walk further than ever before!
Ben’s scoliosis meant he used a special toilet when he first arrived at Esmer House. Increasing his mobility and strengthening his back and legs, he’s now able to use a standard toilet. Another big achievement that reinforces his independence!
A quality guy
Once Ben became more mobile, it was time for him to address the biggest goal on his list. Since leaving education, he set his sights on securing a part-time job.
A big animal lover, his dream job was to work with animals. But by a twist of fate, a different opportunity presented itself when a vacancy for one of our esteemed Voyage Care Quality Checker roles cropped up!
Knowing what a caring and compassionate person Ben is, his support team were confident this would be the ideal role for Ben to start his career journey.
As a sociable individual with a keen eye, Ben jumped at the chance to interview for the role.
Our Quality Checkers visit our other services to inspect them and ensure they’re safe and providing the best care and support for the people we support. These roles are reserved for the people we support as we believe they are the true experts on their support.
After our team at Esmer House helped Ben apply for the role, he was offered an interview!
His team supported him to prepare, ensuring he had the confidence to navigate this experience. They knew his personality made him a perfect fit for the role, so they continued encouraging him right up to the end of his interview.
Eagerly awaiting the outcome, Ben was over the moon when he heard the news – he’d got the job! His outgoing personality and enthusiasm for the role won us over and we were proud to help him get his first taste of working life!
Since Ben became a Quality Checker, he’s played a vital role in visiting our other nearby services and collecting the views and opinions of other people we support. He also assesses our homes with a fine-tooth comb, ensuring everything’s in tip-top shape.
Ben and our other Quality Checkers provide unique perspectives on the safety of our homes. As they navigate their conditions daily, they spot things that able-bodied people might not see – helping us make our homes safe and accessible for everyone.
Life as a Voyage Care Quality Checker has indulged Ben’s love of exploring and meeting new people. He’s explored the local area and met other people we support. Getting to know them and learn about their needs has nurtured his passion for the role. He looks at things with empathy and is proud to act as a voice and an advocate for his extended Voyage Care family.
Navigating the future
Since joining Esmer House, Ben’s plunged headfirst into achieving his goals. Originally unsure about moving out of his parents’ home, his compassionate team and housemates at Esmer House quickly helped him find his feet.
In a short time, his specialist support has helped him achieve three of his goals, and he’s on his way to ticking off number four – going on holiday!
With the support of his team and his progress so far, it won’t be long before he’s packing a suitcase and jetting off into the sun.
Find out more!
To find out more about our specialist Prader-Willi syndrome support and how we can help you, a client, or a loved one, fill out our quick form and a member of the team will get back to you.
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