Deciding on Residential Care for your Child
It is not easy to make the decision to move your child into residential care at any age. This week we are supporting two Lifeworks’ parents whose adult son in transitioning from regular, short break respite care at our Robin’s centre to moving into Sesame, our full time adult residential care home. We hear from Mum and Dad, Sarah and Nick about their individual experiences.
They share the care of their 19-year old son who has autism, epilepsy, sensory needs and is non-verbal. Together they have taken the decision to place him in long term residential care – which comes with mixed emotions.
The Importance of Respite Care – A Lifeline for Families
Sarah: Reuben is 19 and our only son. He is non-verbal has a very high need, which has always been there. His understanding of the world appears to be limited, but he probably understands more than we realise. When he was young it really was very limited. I can’t take my eyes of him now, but when he 9-10 years old it was even more so – he would literally be out the door and up to road! It is so intense caring for a child with learning disabilities like that, 24 hours a day. As a parent you don’t switch off to it, ever. Especially when they have medical needs like seizure activity and hospital trips. It is exhausting. It is exhausting after a day, after a night but after a week, month, a year – after 19 years it is exhausting. Back then a family friend watched Reuben for an hour, someone who runs five businesses by himself, and he turned to me and said, “I have never worked so hard in all my life!”. It is that constant high vigilance that just drains you
Nick: My mum had been doing respite for us with Reuben two nights a week but 10 years ago she became very ill and overnight our respite went. Reuben was 10 years old and Robins respite centre became an option, instead of going to my mums for those nights. He has regularly been going to Robins for short breaks for 10 happy years and has loved it. It has built up to his current time of doing 3 nights respite a week and the odd full week when we went on holiday. We always worked it so that he got what he needed and we got our respite as well. That’s where it started.
Robins’ Short Break & Respite
Sarah: It started off usually getting picked up after school for overnight short break respite. He has always enjoyed it from the start. Robins have always understood what he likes and needs – whether it is a trip to the park after tea in the evening or activities like cycling at the Velopark, trips to Crealey, Cornwall, trampolining. They would do similar trips to what we would do with him – theme parks and rides and parks in general, all of those things that he loves. Even inside, Reuben just loves the sensory room. I’ve even heard people refer to it as ‘Reuben’s room’ because that’s like his space. To have the one-night respite, provided by professionals is invaluable. People would say it gives you a chance to go out for a meal, to spend time by yourself, but all you want to do is sleep or sit down – that is it – to just do nothing. Robins provides that. Over the years you get used to making the most of your respite time. But to be honest, the number one reason is to rest yourself. To find that place to trust someone to take over the care that you give to your child.
Nick: I usually work but during Lockdown I had Reuben 5 out of 7 nights and Sarah had him the other 2. He has got so big now and it is so tiring when you are providing care all day, every day. When things relaxed and he was able to go in for respite short breaks at Robins it just gave me a bit of life back. As much as I love him to bits and we were doing some brilliant and wonderful things, there were times when we were just doing the simple things to survive and that’s not good enough for him. He needs to be doing things that really keep him moving forward.
Over the years Robins helped him develop his coordination, his understanding, his ability to listen and take on what is happening around him in a really good and positive way. For a long-time he wasn’t really social with other children, but he has come out of himself and actually enjoys seeing his friends there and spending time with them. Robins helped to challenge Reuben in what he could do, and has taken him forward. For him it really developed his independence and created really great relationships with people – both with the adults and the other young people there, which has been really nice.
Leaving Children’s Services
Nick: Reuben has just had his last night of respite care at Robins. You don’t realise how much the transition across services does play on you. When he left Robin’s, we got him some presents and a cake. He sat down and gave his key worker Louise a big cuddle and you could see the love. When I was driving away I had a bit of a tear about it. A number the staff who have looked after Reuben over the past 9 years have become like family.
Sarah: Robins have been fantastic over the past 10 years. I talk to other parents and everyone says good things about Robins, especially with children who all have such different needs. I would not hesitate in recommending Robins, in fact I regularly do!
Deciding on an Adult Residential Care Service
Sarah: Reuben is currently transitioning to Sesame which is a long-term residential care home for four adults. Moving him into Sesame has taken a lot of consideration. At 19 he is still like such a young child – It feels like I am handing over 3-year old. On the other hand, caring for Reuben is exhausting on my own. He needs 2:1 care, 24 hours a day, 7 days a week. It is lovely having him at home but it is the care side of it – being able to wash him, take him to the toilet, medication, record keeping alongside the cooking and cleaning. I literally don’t stop. I am on the go, at almost 100 miles an hour the whole time that I’ve got him, until the next day when he gets picked up. I’m almost collapsing. I know I cannot sustain that.
It is a difficult one to be honest – I am just taking it one step at a time. I have been his carer for the whole of his life. That is my job at the moment. The day Reuben moves to residential care, everything changes – my job, finances, car, house – I will need to look at everything. The impact is going to be massive. I don’t even know where I am going to start to be honest but that’s another story. The move has got to be done – it is the next step for Reuben. I have kind of been waiting for this moment, not as in waiting for it to happen, but that I knew it would be happening at some point. I need to make sure that Reuben is where he needs to be. For other parents of 19 year olds going off to university and college it is a similar thing I suppose? Different of course, but from a personal perspective of being a mum – it is sad. Finding somewhere suitable for him has been a big decision, somewhere that is like his home with people who understand him. Talking with Sue, the manager at Sesame it is clear the young people are her top priority – it is genuine and very reassuring.
Nick: There is a lot of emotion around the move into Sesame’s residential care. We had a follow up meeting to sort the plans out. One of the things we are going to do, is not rush. To work to get it right for him – that’s so important. We originally stumbled across the service and having been there in the first 10 mins it felt like the right place for him. Sue has built the service and team around her ethics and her understanding of what good care looks like – which is brilliant.
Moving into Sesame – looking to the future
Sarah: I know that the times we will have together in the future will now be quality time. Because I get so exhausted looking after Reuben, I’ve got no energy to do the fun things and then I feel bad about it. The move to Sesame is going to work well for everyone. Sesame is a fantastic place and it brilliant that we found it.
Nick: Going to Sesame is what he needs. It is going to give us the chance to move into a new part of our lives, where is it not full time caring, Where the time we spend with him is energised, really being able to enjoy the opportunities together with the support of Sesame staff. I’m over the moon about Sesame and feeling really blessed we found it.
To find out more about about Robins’ Short Breaks and Respite click here
To find out more about Sesame, our Adult Residential Care service click here
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