Theo’s early years were challenging, both for him and his family. Without a clear diagnosis, only the broad term ‘Global Developmental Delay’, there was little sense of what the future might hold. Theo had significant care needs and was non-verbal. When he was 12, an unexpected seizure left him unable to walk indoors and paralysed his dominant left hand. From that point, it became clear he would need ongoing residential support and full-time wheelchair use.
As Theo grew older, he moved into a local specialist college where he felt settled and happy. But when it was time to leave, Caryn faced the daunting question of what should come next.
“I knew exactly what I wanted for Theo,” she explains. “Somewhere that really understood him and would give him a full life. I wanted him to keep learning. My worst fear was that he would have a sedentary existence.”
Caryn searched nationally for the right placement, while also navigating the demands of securing local authority social care funding.
“David Lewis called me in the middle of all of that,” she recalls. “I’d visited before, but the homes weren’t right for Theo. When the Operations Director remembered our conversations and called about a new home being built, the timing was perfect.”
Because the assessment process at David Lewis is designed to work alongside social care plans, things began to slot into place. And as the new, fully accessible home neared completion, Caryn could see how well it might suit Theo. The home had wide corridors and wet rooms, with generous bedrooms and options to personalise the space.
What stood out just as strongly was the depth of expertise across the wider site, including experienced staff, on-site medical and therapy services, and a wide range of activities on and off site.
Within 24 hours of Theo moving in, Caryn was contacted by a learning disability nurse, and soon after met his resident doctor.
“It gave me a huge amount of reassurance,” she says. “Theo’s plans were fully reviewed with me, documents I shared were discussed and I felt listened to and involved.”
Caryn has been impressed by how any issues she’s raised, are handled. “I have immediate access to share any worries. As a parent, you need nurture too during a transition, and I’ve had that beyond measure.”
Since moving into Cedar Lodge, Theo’s world has continued to expand. Staff have learned to drive his van, enabling regular trips into the local community, the countryside, bowling and meals out. Back at Cedar, he’s supported to explore activities and make choices about how he spends his time. Though non-verbal, those around him are learning how he communicates and what he enjoys, including recently sitting proudly at the front of a training session.
After many years of uncertainty, Theo has also finally received a diagnosis. He is one of only 30 people in the world identified with his condition. At David Lewis, follow up meetings with the visiting neurologist rapidly took place.
“It was incredibly cathartic,” Caryn says. “We finally had the diagnosis we never believed we’d get.”
Looking back, she reflects,
“Having Theo living at David Lewis gives me peace of mind. It’s been a tough few years, battling for placements, certainty and the right future for him. Now, there’s so much talent and expertise around him that he can tap into that support every day. I know he’s in a place where he can be known, understood, kept safe, and supported to live a fulfilling life.”
