We had such hopes for the last 12 months. After exploring the possibility of supported living, we had decided that it wasn’t the right time for Owen to make that move, and at the age of 18 the best next step for him would be residential college. We had searched the internet for a list of possible colleges and then visited the three that looked most promising. We fell in love with Coleg Elydir right from the start, it was in the middle of nowhere and the drive from Shrewsbury was endless, but the Coleg environment and feel was great and Owen moved there in September 2019.

It was a big change for all of us, and to be honest Owen probably coped better than we did. He was such a big presence in our lives and while supporting him was a full-time job, he left a big gap. We missed his enthusiasm for life and the fun and laughter that always followed him around.

Owen thrived at Coleg Elydir and we had all settled into a good routine. He kept in contact with us via ‘WhatsApp’ and video calls and we were seeing real progress in his independence and essential skills and then Covid 19 happened. Suddenly things changed for everyone, the Government was talking about locking the country down and Coleg had to start doing things differently. We were faced with the possibility of our vulnerable son being stuck miles away from us, when everyone was scared about what this virus meant for us and our families. This meant that, during a telephone call with Owen on the Sunday before lockdown, when he started to get upset and asked to come home, we knew we had to go and fetch him.

We now had eight of us at home and while Owen’s dad and I are lucky enough to both be able to work from home, this wasn’t a situation that we had planned for. Our household is a complicated one, which meant that it was difficult to provide Owen with the support he needed when he was home 24/7. He ended up sharing a room with one of his brothers for 5 months that we hadn’t planned for and while they both happily share a room for a few weeks during holidays, this extended period was pushing the boundaries of brotherly love. Owen was becoming a young adult, he wanted his own space, he didn’t want to have to do things just because we were doing them, but the reality was that we couldn’t leave him alone by himself and we had to meet the need of his younger brothers too. Being a family was hard during this time, and while things were easier for a while, when Owen’s older brother was furloughed and Adult Social Care agreed we could pay him to support Owen for a few hours each weekday, as well as receiving extra funding for him to visit his short break provider, we all struggled and Owen’s quality of life and therefore his behaviour deteriorated.

As the summer went on and we all started to understand that Covid 19 and its impact was going to be a long-term challenge, we started to think about how we were going to cope with this as a family. We were tired and we knew we were not supporting Owen effectively, we were also facing his brothers returning full time to school and college, which meant that an increased risk of them coming into contact with someone with coronavirus. Owen has a history of chest infections and pneumonia and we didn’t want to find out if this made him more susceptible to the effects of the virus.

Owen was due to go back to Coleg mid-September. The Coleg had done a great job of staying in touch with us since March, with weekly updates from the Head, online choir sessions, and SALT sessions over Zoom. They had had a couple of scares with a staff member and one residential student showing symptoms, but both had eventually tested negative. Everyone was starting to adjust to a new normal and Owen was asking when he was going to go back to see his friends; at one point he got very angry with us for “stopping him from going back to Coleg”. It was then that we knew we had to find a longer-term solution for Owen and for the rest of the family. Everything felt so fragile, Owen’s brothers were also struggling with the impact of the last few months, which meant that home could be at times be a very volatile place and definitely not the best environment for Owen.

It was at this point that we had to face up to the fact that in the current situation, we couldn’t at home provide Owen with what he needed at this stage in his life. He needed stimulation and structure and he needed space.  Fundamentally he needed to be back at Coleg, but what he needed more than anything was a period of stability. This was when we start to think about a 52-week placement. Even just saying that out loud was difficult and it felt like we were giving up, but at the same time it did mean that Owen would have an uninterrupted period of support after all the uncertainty and the rest of the family would have a chance to settle into a new routine, with the space to do so.

The first person that we spoke to about the possibility of a 52 week placement was Owen, we talked about him staying at Coleg during the holidays, not coming home for any weekends, spending Christmas there etc. and did what we could to support his understanding of what this would mean for him. He responded positively straight away and loved the idea of spending Christmas with his friends….ouch. One of the joys of parenting Owen is that he tells it to you straight!!

Next, we spoke to Owen’s social worker, which was hard because despite knowing that this was the right thing for Owen, we felt like we were asking to send him away and admitting that we couldn’t cope. We were grateful for the understanding we received from the social worker, who was supportive and kind and agreed to start discussions with senior managers and the Coleg, so that the appropriate funding could be put in place. We talked about how this was happening as a response to a situation that nobody had expected and that in the context of Covid 19, it was a positive step for Owen.

From there things moved pretty quickly, we talked to the rest of the family, which was another difficult conversation, because we had to provide reassurance about concerns and emotions that we were struggling to deal with too. Owen’s younger brother was particularly concerned and was worried that it was his fault because they had found it difficult to share a room in the last few weeks. So we talked about how it had never been the plan for them to have to share for so long and how we should see Owen’s keenness to move to Coleg as an example of how well we had done as a family, in supporting his independence. Further discussions with the social worker encouraged us to think about building planned time for Owen to spend time with us and so we agreed with Owen that we would go for a 49 week placement, allowing three weeks for family holidays and a couple of weekend visits home during the next 12 months.

Owen went back to Coleg Elidyr on the 4th September and of course he is loving it. We have cried a few tears since then, but we look forward to his calls and messages. In this constantly changing world we are holding on to the fact that Coleg can provide the security and stability that he relies on and which we can’t provide for him at the moment and therefore we have done what we have always tried to do for Owen, that is to make the best decisions we can, with his needs at the foremost of our minds: as parent carers what more can we do?

Sarah Thomas
PACC