Katie Lay is 33 years old and received a diagnosis of Dravet syndrome when she was 30. When Katie was younger life at home had become very difficult for the Lay family, putting a strain on their relationships and making it difficult to give their son, who had his own health issues, the attention he needed. As neither Angie nor Dave drove, going out with Katie proved difficult. Accessing information was hard as internet, Facebook and emails weren’t around and the family were not aware of any support groups. The Lay family felt very isolated at times and struggled to lead a ‘normal’ life.
Making the decision to send Katie to a special needs residential school was the hardest decision that her parents ever had to make. There was a lot of soul searching. Were they making the right decision? Was it in Katie’s best interests? How were they going to tell people and what would they think of them? But once they’d made that decision – and knew that family, friends and healthcare professionals were supportive – it helped them enormously.
When the possibility of residential schooling was first discussed, the family’s Social Worker arranged for Katie to go to visit a special needs respite home for a three week stay, to see what difference it would make at home. Fortunately, Katie really enjoyed her time there. Although the family missed her terribly, life was a lot easier at home: they had more time to spend with their son and their relationship improved; they found they weren’t stressed and tired all the time, and they felt less trapped by their situation. At the end of Katie’s respite time everyone agreed that this could work for both Katie and the entire family.
The family visited three schools before deciding on which one was right for Katie. Numerous reports were gathered together to enable a decision to be made by the local authority. Once Katie started her residential school, life at home for the Lay family changed dramatically. Initially, there was an adjustment period, where the family experienced feelings of guilt. It also took Katie around six months to fully settle into her new home and school. It helped that Katie was surrounded by her familiar possessions, toys, family photographs; also she bonded with a couple of her carers really well. In the meantime, Angie passed her driving test so the family could visit at weekends.
When Katie turned 18, another transition process began, and the Lay family started to look for a suitable residential home for adults. Again the Social Worker helped with searching for a home and compiling reports. Regular phone calls and letters to the all relevant organisations kept communication flowing and ensured that everyone knew what was going on. Katie was granted funding for full-time care at an adult hospice.
Katie has been at the adult hospice for 12 years now. The family admits that there have been ups and downs: there have been occasions when they were unhappy about certain things, but they have always found ways to address concerns with staff and get any problems resolved.
Angie said: “we can look back on it now and know that it was the right decision for all of us. Katie has a life and a home for life. Importantly, it fulfils her medical needs with 24/7 nursing staff on-site; she is happy and settled. Knowing that she is safe and well-cared for means we can also live our life – after all you do only get one life.”