Doing as I am Told

It was always the plan that Joshua would attend daycare after leaving school and this week, we have finally achieved 3 days a week at daycare, after all the delays of lockdown, Covid 19 pandemic and his gradual staggered start. I always knew that it would be good for Joshua to gain independence from us, to mix with other young adults and to engage in the range of activities that they offer. I always knew that my husband and I would enjoy a real sense of freedom, while he is being taken care of by someone else. I am delighted how well he has settled in and how much he clearly enjoys it and how much the staff seem to like him already.

However, I did not appreciate how my life would change with the introduction of daycare, on the days when he is not in daycare but is at home with us. We have deliberately booked him into daycare on alternate days, so that he has a rest day in between his daycare days, so that he does not get over-tired as a trigger for seizures. So having attended daycare on Monday, he had a rest day on Tuesday at home. After another unsettled night, Joshua stayed in bed until 10am, so I had the opportunity to join my Mermaid group with some sunrise wild swimming in the sea, which I loved. I pottered around at home all morning doing some baking and getting various jobs done.

But it was a sunny day, albeit a bit breezy, so I announced to my husband that we were going to walk into town – we live on the outskirts ,one mile from the centre of town – and have some lunch out in a café. He said that he would not walk with us, as ‘you will take all day’ and he was in the middle of a job outside, but he would meet us for lunch in half an hour. So we set off with just one dog walking alongside Joshua’s off-road wheelchair. He was very happy as we set off as we had not walked into town for a while – it was a regular outing during lockdown and he became bored of it, but this was a treat. Joshua waved or gave a thumbs up to everyone we passed and he even got a response from some car drivers.

We chose a dog-friendly café and went inside, as it was too windy to sit outside, despite the sunshine. I seated Joshua and tied up Ruby, then went order our drinks. I have been leaving Joshua at the table alone more often these days and he does not move from his seat, so that is an improvement. I watched him from the counter and he was busy introducing himself to everyone with a wave and a grin. Once seated with our drinks, I chose our food and went back to order food, again he sat nicely, even though he did not respond when the waiter brought our drinks. My husband joined us before the food arrived, having cycled into town. Joshua ate all of his food once it had cooled and then we were ready to leave. My husband cycled home and I set off walking through the park. But as we turned to head home, Joshua objected and pointed towards the beach. As I had done my jobs in the morning, and I knew he was in daycare today, I was much more relaxed and was able to allow Joshua to call the shots, so we headed for the beach.

He pulled to get out of the buggy once on the promenade, so I let him walk alongside, which he enjoys doing but it takes time, so is not ideal if I am rushing, but yesterday, I was in no hurry. He chose a few different benches to sit on and look at the sea and the other walkers. Joshua was very happy to get his own way and I realised that he rarely does, as I probably often have errands to run or have to get back to crack on with something or other at home. But we just sat companionably together in the sunshine. Joshua turned to me, looked me deep in the eyes and spontaneously said ” No Play”. It was so clear and I gave him a bear hug, holding back the tears ; I am convinced that he was telling me that he realised that this was not a daycare day, that he was enjoying our special time together. He was showing me that he understood the new routine of his life now, and it is suiting him down to the ground – the best of both worlds.

Thrilled with his response, I decided to allow Joshua to decide what happened next. I offered him the choice of going down onto the beach, to throw stones into the sea for Ruby or did he want to do something else. Joshua clearly asked for “café!” , which made me laugh as we had just come from one, but I honoured my promise to him and we walked back towards town and stopped in another café for drinks only this time… or so I thought. He remembered that last time we were there, the lady had put him some crisps in a bowl – even though it is not on the menu – so he requested “crisps!”. At first I tried to talk him out of it and ignored the request, but he was insistent so I went up to the counter to order him some. the young girl began to tell me that they were not on the menu, when the manager saw us and smiled, telling her that she would get them from the kitchen, free of charge. He was delighted with his generous bowl of crisps and he tucked in, happily.

As I watched him, I reflected : Joshua does not often get to choose what he wants to do as he has to fit in around my busy life and even at Play (daycare), the day’s activities will be planned for him. So this was a revelation, to be in no real hurry, that I could actually listen to what Joshua wanted, was a new experience. Daycare has given us that: I knew that I had today and Friday to get stuff done, so I could give him an afternoon when he was in charge of our time and he loved it. We will definitely do that again and I am grateful to daycare for allowing that to happen, as that was a benefit that I had not predicted.

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