Oliver's Story
Oliver is a lovable and kind young man who takes everything in his stride. He has cerebral palsy with associated complex health conditions. This is his story.
19 year old Oliver has cerebral palsy and complex health conditions, some of which are life threatening. He and his family have been supported by Naomi House & Jacksplace for more than 14 years.
Over the years, Oliver and his family have had respite stays at both of our hospices and his siblings have taken part in activities arranged by our family support team.
Oliver’s mum, Rachel shares their story:
Oliver has a very cheeky, mischievous and lovely nature and has a great outlook on life. He likes being busy and particularly loves eating out, bowling and going to the cinema. He loves spending time with his younger siblings and being a big brother to them. As he has got older, he has stepped up into his big brother role in the way that he can. He is so proud of them and being part of their lives.
Oliver’s health condition
Oliver’s main diagnosis is cerebral palsy with many associated health conditions. He has severe developmental delay, a brain condition called hydrocephalus, and epilepsy. Oliver needs full support for every part of his daily life, 24 hours a day. He needs help with feeding, washing and taking medication and won’t ever be able to have any level of independence.
Our first visit to Naomi House & Jacksplace
Oliver was very unwell with seizures just after he started school aged five. I was pregnant with our daughter Jasmine, and we were very concerned about how we were going to manage when the baby was born. There was nobody we could leave Oliver with because his epilepsy was so severe. His seizures continued to escalate, and he was in and out of hospital. It was then that we were referred to Naomi House & Jacksplace.
I remember the first time we stayed at Naomi House; I met the loveliest lady, who still works there now – nurse Margaret. I had never left Oliver before, and I was so anxious. I was heavily pregnant, and she was so wonderfully kind and sweet to me.
Building trust with people looking after Oliver
Putting Oliver in the care of other people wasn’t comfortable for me because I had been with him constantly up to that point. But being pregnant with Jasmine, I knew that I had to put my trust in other people. I don’t think I could have had anyone more lovely to be there with us. On that first night I sat talking with the care team about Oliver and the things to look out for. I was very reassured, and I remember going upstairs to get some sleep and it was nice, even if a bit nerve racking.
How Oliver Communicates
Oliver has never been able to talk, but it is through knowing him very well that we can communicate with him. He uses facial expressions and eye pointing. How he engages depends on how well he is and the relationship he has with the people supporting him, and how they interpret what he wants.
Trusting Oliver to the care of other people when you’re not there is a big thing. We’re putting our most loved and treasured person in the care of someone else. Oliver knows that all the nurses love him. He knows that he is going to be spoilt rotten while he’s there.
Oliver gets so excited when he’s coming to Naomi House & Jacksplace. He understands that it’s his holiday, but it took time to get to that point of trust.
Transition to Jacksplace – our hospice for young adults
Jacksplace is next to Naomi House and the two hospices are connected by a corridor. Jacksplace is for young adults aged between 16 and 35. Oliver transitioned from Naomi House when he was 18. He adjusted quickly because the staff work across both hospices and know him well. He was ready for the change because he was at a stage where he needed to be with young adults of a similar age.
Jacksplace is very comfortable and familiar to Oliver and that long term familiarity is a real benefit for him.
The difference Naomi House & Jacksplace makes to us
In the earlier years when Jasmine was little, we would stay at Naomi House, and it was something we could do together as a family. I could give Jasmine time knowing that Oliver’s care needs were being looked after. It was a really nice environment. Oliver stays without us at Jacksplace now and we can have a break knowing that he is OK. Oliver has access to doctors, nurses and physiotherapists to care for his needs.
What Oliver likes doing when he visits Jacksplace
Oliver loves to stay up later in the evening, particularly for movie nights and being part of that older group. The activities are more age appropriate for him in Jacksplace.
We can tell that he’s been happy and had a good time and he often looks really annoyed when I arrive to pick him up. He’ll sometimes sulk for a whole day when he comes home. It’s as if he’s saying, ‘I’m not ready to come home yet mum’.
Oliver always likes the trips out as well as his sessions in the hydrotherapy pool. When he is well, he loves the food at Jacksplace. I always joke with him when I drop him off and say that I am jealous and wish I was staying with him because of the food. He always laughs at that.
Oliver loves the music sessions at Jacksplace. Music is his absolute passion, and he has very specific tastes. There are certain songs that make him go wild with excitement when you put them on.
Sibling Groups
Oliver’s younger sister, Jasmine, has been coming to the sibling groups and activity days for many years. His other sister has started going too and his little brother will join in once he has started school. The activities are really good and open up conversations about the differences in people. It gives them a much better perspective on life. Importantly, they meet other children whose brothers and sisters are also visiting our hospices.
The future for Oliver
We don’t know what the future holds for Oliver. Several of his conditions are life threatening. He has a combination of different needs and if one thing escalates, he can deteriorate quite quickly. Last winter he was in hospital with flu, and it developed into pneumonia. It’s harder for him to fight off those things because he hasn’t got the strength for coughing and his seizures often increase when he is unwell. We hope he is going to continue to have a very happy and long life but with the number of health conditions he’s got, he’s very very vulnerable.
Oliver has been visiting Naomi House & Jacksplace for many happy years. It’s a very warm family environment and the people genuinely care for him; nothing is too much trouble. It’s so lovely that he’s just accepted for who he is.
Why support Naomi House & Jacksplace?
"At first, I thought Naomi House & Jacksplace was going to be a very sad environment, but it isn’t, it’s uplifting and like being part of a big extended family. When you walk in and see familiar people, you just feel relieved. Naomi House & Jacksplace is a lifeline for so many people, for so many different reasons." - Rachel, Oliver's mum