Reflecting on James’ First Year in Supported Accommodation

It’s been the strangest year. A rollercoaster of emotions. Sounds a bit of a cliché but it really has. In 3 weeks time it’ll be a year since James moved from our family home into his own flat in supported accommodation. It hardly seems possible. It feels like just yesterday and yet it also feels like such a long time. 

This time last year I was counting the days we still had James with us at home. We had done everything we could to prepare James’ new home for him and it was exactly a year ago today that we took him on his first visit to his new flat. Over the next 3 weeks we built on those visits gradually extending the amount of time we spent there up until moving day. It’s a day I will never forget. I’ve played it over in my mind many times.

That first evening coming home without James I was bereft. The next morning Darryl went to work and Harry went to Uni. The house was so quiet. It was never quiet when James was here. If he wasn’t making a noise himself, he was banging a drum or playing music on his iPad. Sometimes I longed for a bit of peace and quiet. Now I had it by the bucketload.   

The First Test

By sheer coincidence James had been called for his second covid injection the day after he moved. We were desperate for him to be protected so we kept that appointment. He had reacted quite badly to the first one but he was at home with us then and I could look after him. This time I was having to put my trust in James’ new staff team just 24hrs after he’d moved in. We’d spent quite a lot of time with them over the previous 6 months so they weren’t exactly strangers but it’s still hard to trust other people with the care of someone who is so vulnerable, so precious. He can’t tell them if he is feeling unwell, hot or in pain. He can’t tell them anything at all. As it happened, they took very good care of him and James didn’t have the reaction he had the first time.

Letting Go

Over the following months I had to learn to take a step back. Darryl says I’m a control freak…he’s right. I think I’ve always been an organised person but became increasingly so since having James. I needed to be organised, I had to know when his feed needed ordering or how to contact the continence team or when his blue badge expired or his medication ran out or any number of things I had to do to keep life running as smoothly as possible.  You may think it’s a relief to hand over the responsibility to someone else but it’s hard when you’ve been used to doing it yourself for so many years. If you do it yourself you know its been done. At first I’d check James’ staff had ordered his medication or that his milk delivery had arrived on time, but as it seemed that they were on top of it I began to not ask and worry less. Staff do call me and run things by me though and that’s reassuring. They’d never exclude me, they know very much I’m mum and I want to know what’s going on in James’ life.

The First Birthday

Six weeks after James moved it was his birthday. Luckily it was on a Sunday so he stayed with us the night before so he could wake up here on his birthday. It was a lovely sunny day and when James’ grandparents, auntie and partner arrived, we were able to be out in the garden and we had a lovely time. It felt strange taking him home after tea and putting his cards up at his flat instead of here though. 

My Surgery

Five months after James moved out I went into hospital to have a hip replacement. I’d had one the year before when James was still living at home. Darryl had to take a month off work to look after James the first time, and then put all sorts of other arrangements in place for when he went back to work. This time around, without James living here, it was a far less complex affair. Unfortunately, 5 weeks later I ended up in A&E with an infection in my hip. I was admitted and had further surgery a few days later. I ended up staying in hospital for 15 days. If this had happened whilst James was living at home it would have caused all sorts of complications in terms of planning his care. I missed James terribly while I was in hospital but I was able to focus on getting myself better without worrying about who was with James or picking him up from day service etc. I knew he was being well looked after. Between Darryl, my parents and my sister they all made sure James had family visits too at the usual times and so he didn’t miss me too much at all.

Christmas 2021

By the time Christmas came I was getting back on my feet. Having James home for a few days at Christmas was lovely. I was concerned how he would be returning to his home after a 3 night stay with us. It was the longest he had stayed since he moved out. I shouldn’t have worried, he was tired from all the Christmas celebrations and I think he was ready to go back home to what has become his normal routine.

The New Year

There was an occasion in the New Year when James was unwell with a minor tummy upset. His house staff made the decision to keep James home from his day service and they rang to let me know. They were right to do so but it still feels strange when someone else is making those decisions that were always down to me. 

Unfortunately a couple of weeks ago James got covid. Although he is fully vaccinated, I had dreaded him getting it. Naturally I was concerned that I wasn’t with him, I wasn’t the one checking his temperature, deciding if he needed paracetamol etc. Fortunately, James wasn’t too unwell but I was very reassured by the care James’ staff team showed him. They did a great job of monitoring him closely and keeping me informed how he was. I genuinely feel they care about him and he has built a relationship of trust with them too.

Mothers Day

This year was the first Mothers Day in 26 years I’ve not been with James. The first since he moved out. I would have seen him that weekend but me having covid put paid to that. In some ways it’s fortunate that dates bear no significance to James so he doesn’t know what he is missing. But then that makes me sad because he doesn’t understand when there are special dates to celebrate either. I’d got up early, I woke and couldn’t settle for coughing. Over a cup of tea I thought about James and I missed him. But, I told myself that the last couple of years more so than ever, there are many mums who have not been able to be with their children on Mothers Day and I will have many more days with James. It still hurt, of course. James’ staff sent me this picture on the company app of James just to say Happy Mothers Day Mum. She knew I would be missing him and I appreciated the gesture. My sister had arranged to see James and had taken him to her house for a few hours so I was able to do a short video call with him too. It was so nice just to see him. He wasn’t that bothered about seeing me (😊), he just wanted to do his puzzle, but he blew me kisses and I felt all the better for it.   

Our Lives Have Evolved

Inevitably, we have all settled into new routines in the last year. James has his routine and we have ours. It would be fair to say life’s a lot calmer, less stressful. It’s worked well that we have James come to us every Tuesday after his day service for tea, and he sees Grandma and Grandad then too. We also see him every weekend and he comes for a sleepover every few weeks too on a Saturday night. With covid restrictions, and my surgery, we’ve not fully felt the benefit of James not being here yet. What I mean is that we are only just finding now I am able, that Darryl and I can decide on a whim to go for a walk together. It’s still novelty to us that we can leave the house together without making arrangements for James or planning in advance. 

I’m Always Torn

My life is full of contradictions, though. I love to have James home with us to liven the place up, I miss his noise, but then I like the peace at other times too. Last summer I enjoyed being able to sit in the garden of an evening with a book after dinner. Something I could never do before, but then I miss cuddling up in the swivel chair of an evening watching TV with James too. When James has been here to stay I realise how exhausting it was looking after him and I wonder how we did it all the time. The early morning baths, the getting up in the night, the constant attention he wants. I never was a morning person but I miss going into his room and saying ‘good morning’ to him and him trying to ‘sign’ it back to me and being excited to see me and start his day. I miss the rainy Sunday afternoons we sat together at the table doing puzzles with the radio or a music dvd with us waving our arms to the music. But I like laying on the settee on my own watching a film now too. I miss his cuddles but I don’t miss washing his feeding tubes every morning. I miss tucking him up in bed at night. I don’t miss him snatching my plate away when I’ve finished eating so I can do something with him, I enjoy more leisurely mealtimes now. I don’t miss the meltdowns when family life just got too much for James to cope with and I love that Darryl, Harry and I can just sit and chat now over coffee which we couldn’t before. But….. I miss James being here and he’s never far from my thoughts.  

Even now, a year on, there’s still a wrench in my tummy when I have to say goodbye to him. I hope that gets easier in time, but I’m not sure it ever will. I hope James is happy. I hope he knows how much we love him and that he is and always will be a huge part of our lives.

Incidentally…….

Today, April 2^nd marks the 15^th annual World Autism Awareness Day.

The Maori word for Autism is Takiwatanga which means ‘in their own time and space.’