It was August bank Holiday Monday yesterday and we had a perfect, simple day together. After a leisurely morning bath, I packed up a flask and some biscuits and we headed off for a favourite river walk with Joshua and all four dogs. We knew it would be popular on a sunny bank holiday but there was still plenty of space of the river bank to park our rug. Joshua flopped on the grass and lay in the sun, he was unable to wait for me to spread the rug out. We enjoyed a drink with some ginger nuts then took the dogs to the river to paddle and to throw stones. It was the puppies’ first visit to a river and they seemed to love it. Joshua threw endless stones into the water for Ruby and then he got too hot and he chose to lay on the grass again, in the shade of a large leafy tree. it was blissful there and we stayed for several hours. We might have stayed longer if we had brought a picnic lunch and if we did not had our sights set on the local village summer fete, so we packed up and Joshua and I waited on a bench at the top of a steep hill, while my husband walked the dogs back to the car to drive to pick us up.
The summer fete was a delightful traditional village event : the boys both tried their luck on the coconut shy but I won nothing on the tombola but bought two novels for 50 pence each and a pot of homemade raspberry jam. Joshua was unusually hopeless at skittles, he kept throwing the giant tennis balls to his Dad rather than aiming them at the skittles. Then we made our way to the village hall for refreshments, where we had out fill of sandwiches and homemade cakes while a brass band played outside. After we had eaten, Joshua became restless so I stood up to take Joshua to watch the band while my husband finished his third cup of tea. Joshua waved at he large table next to us. I was reading the notice board on the wall as we walked towards the exit when I heard a big ‘wooooo’ noise from the room so I turned around to see what was going on : Joshua was flashing his bare tummy at the crowd and was delighted by the whoop of admiration that he received. I pulled his t-shirt down quickly, smiled at the group of elderly ladies who had been so impressed, and we scooted outside where we sat listening to the brass band in the sunshine.
Both had been really perfect ways to spend the day and neither had involved long queues battling against bank holiday traffic or a big expenditure, they were indeed simple country pleasures, which we all three enjoyed.
If things had been different with Joshua, if he had not suffered from brain damage at birth, we would have to have traveled home to collect his A Level results yesterday. It would have marked the next stage of his life and a major landmark in his independence as he would have hopefully have got the grades necessary to go to his university of choice. His peers that I saw on Facebook achieved their goals and will be off to University in the autumn. I know that this path is nobody’s by right, that everyone puts in hard work and determination to get there, but Joshua was deprived of that essential brain power to even have the choice, which makes me sad on his behalf.
So instead of celebrating with Joshua, I reflect back on my A level results day 34 years ago!! In those days, you were not sent your results electronically, we had to go into school to have a brown envelope passed to us and so you received the news in front of your teachers and peers. I needed three Bs to get onto my course of choice at my preferred university, which seemed like a tall order at the time. Thankfully I exceeded those grades and all was well, I then spent all summer 1985 panicking about leaving home and my family. and being over 3 hours drive away. Of course I settled in well and I loved my time at university, which is why I feel that Joshua is missing out. I wish all of Joshua’s peers well for the start of their adventure and hope that all of their dreams come true.
That is a sadness that I feel on his behalf , but Joshua himself is, thankfully, oblivious to what yesterday could have meant for him. So long as Joshua has chips, cuddles and music it seems, his life is complete at the moment. It was a sunny day, the forecasters threaten that it will be our last one of our holiday, so we made the most of it on the beach and prom most of the day. We walked along the prom towards the parts of the beach where the dogs could play, until Joshua insisted that we stop at a cafe for a sit down and admired the sea view. The tide was in when we reached the ‘dog beach section’ so we three sat on the sea wall, with our legs dangling, while the dogs played on the wet sand. My husband went for a swim in the sea and took the dogs out with him and then he bought a tennis ball which Joshua enjoyed throwing for them to fetch. Joshua and I lay on the rug once enough sand revealed itself, once the tide started to retreat, so we were there for some time. Eventually we packed our stuff up and we walked back along the prom to another cafe for a late lunch, where we sat outside, right next to the beach. We had delicious food and then headed back to the house, up the steep hill once more, which Joshua takes in his stride these days. We are very fortunate to have had a lovely beach day, it is important to take advantage of all opportunities that come our way, whatever they might be.
It was very wet all day yesterday so we had to adapt our plans and it turned out to be , so it seemed, one of Joshua’s favourite days of the holidays. Firstly we were not rushing him out in the morning, he was able to spend some time at home watching his music DVD and enjoying a leisurely bath. We decided to go to the nearest big town to see Lion King at the cinema, and my husband and I walked the dogs in the rain en route, but Joshua waited , in the dry, in the car, where we could see him. It seemed that everyone else on the island had had the same cinema idea as the traffic was crazy and we queued much of the way into the town. Rather than the Donalds lunch that we had planned, we diverted to Pizza Express, where I had some vouchers to use to pay for our lunch. Just as we parked the car, Joshua had seizures and suddenly looked very pale and with bloodshot eyes. We expected that to spoil his fun, but fortunately he did not require rescue medication and he made a good recovery, though it left him rather wobbly for a while.
He was able to walk the short distance to the restaurant in the rain and he seemed pleased to be there, even though he became sleepy. But when the food came, he perked up and enjoyed his share of dough balls and then all of his lasagne. We then walked down the hill to the cinema, which was heaving as everyone had clearly had the same idea. We had not pre-booked seats for Lion King and so it was full and they could only offer me single seats dotted around the theatre by the time our turn came. I did not think that Joshua could or should sit between strangers – although the possibility did amuse me – so we diverted to an alternative children’s film, Play Mobil,for me and Joshua while his Dad escaped to see an 18 film. In the warm, dark theatre, both Joshua and I nodded off during the advertisements and missed the start of the film. But once we woke refreshed, Joshua sat beautifully enjoying the cinema experience: I don’t think that he was following the plot -such as it was! – but he enjoyed the large, colourful screen and the comfortable front row seats. In fact he stayed sitting still right through the final credits.
We had a short wait for my husband’s longer film to end and when he appeared, Joshua gave him a big hug to show him how he had missed him. The heavy rain had turned into light drizzle as we walked back up the hill to take Joshua to Donalds for his tea, just to round his fun day off before we drove home again. While the dry, sunny days are easier to fill on holiday, Joshua seemed happy with his wet day entertainment and he still has Lion King to look forward to!
We do not go out much in the evenings on holiday; after a day out and about, after his evening meal, Joshua likes to have a bath, laze around then to be tucked up in bed around 9 pm. But last night we broke that pattern to be able to enjoy some live music. In order to prepare for our big night out, we came home around 4 pm, when he had a siesta – I pinched one too! Then we headed out again around 6 and parked in the busy town. Joshua walked between us happily to the bar where the band were performing and we managed to find a picnic bench to sit at while we waited for them to begin. I know that he is not comfortable in this type of seating, with no back support, so he was soon wriggling and trying to stand up. We kept him entertained for a while by buying us some street food and then the band finally came on and he was occupied for a while, enjoying their performance.
But then he was uncomfortable and we wished we had brought the wheelchair, as it would have been a more comfortable seat for him.My husband took him for a walk around and then we both took turns at that – one walking with Joshua, while the other held our table. I took him to nearer the stage, where he stood for a while enjoying the live music experience but then it became clear that he was cold. When he sat down, we wrapped him in my coat too and he was happy to sit that way, holding my hand, for some time. Joshua’s circulation is not very good, so his hands and feet soon get icy cold and he struggles to warm him self up again – this is alien to me as I always have warm hands and feet. On one of our wanders, he spotted an art gallery with comfortable leather sofas in the window, and he fancied sitting there so he rattled, then kicked, the locked doors trying to get in!
The band finished at 9 pm, when he is usually in bed, so we walked him back to the car. he strode out well, confident that he would be heading home in his warm car soon. When we got back to the house, he went straight to bed after his big night out. So on Sunday he was able to make choices about what he wanted to do on the pier, but last night he had to fit in with what we wanted to do. He certainly enjoyed the live music, but he would definitely have had more fun if he could have been warmer and more comfortable, so we will go more prepared next time.
Joshua does not get to choose much for himself in his life : I decide what he will eat for his meals, where he will go and what he will wear for instance. I try to give him choices between two alternatives but more often than not, I make decisions for him. But yesterday morning we went out on a walk together and I let him determine what we did. My husband had cycled to a vintage car show and we left the dogs at home,so there was just the two of us to please.
We stepped out of the gate and Joshua could choose whether to go right , up the hill to the high street or left, downhill towards the beach? He chose the easier option of downhill so off we went, me holding on tight as it was steep and he was almost running down. Joshua selected a left turn at the bottom of the hill and we headed towards the pier, I had planned to go to the regatta to see what was going on on the seafront, but Joshua had other ideas: he dragged me onto the pier. Once inside I let go of his hand and let him lead the way; he wove through the various slot machines and computer games, halting briefly by the ten pin bowling to watch the familiar sounds – he goes bowling with school. But then he headed onwards again to the cafe where we ate tea last week and he went to sit down at the same table, but unfortunately it was occupied and I intervened, and moved him along by one table. He crossed his legs as if to say he was staying, so I ordered myself a mug of tea and him a bowl of chips and an orange juice, which came quickly and he tucked in.
He decided when he had had enough and took off back towards the amusements. I could see that it was now pouring so I was in no hurry to move him on. He hovered by a baseball game where for 50 pence, you got 45 seconds of throwing two basketballs into a hoop. So I found a pound coin and he enjoyed two games. At first, he wanted to throw the ball outwards, towards the amusements but he soon learned that the game was to aim at the basket and he even got a few in the target. He was enjoying the game so much, that I changed a £5 note and he had another ten games!. It was so lovely to find something that he was enjoying and focused on and something that he had chosen, that we had a great time.
After the money was gone, he wandered towards the exit but saw the rain and changed his mind. Instead he turned around and he went into the bar where we had stopped for a drink the other night – he may have been looking for his Dad. But I bought us an orange juice between us and we sat by the window looking out at the sea. He had a few sips but was not really interested in the drink, so we left and we walked back up the hill to the house. He stopped just once when we were almost back, but I was able to persuade him that we were almost home. Once back, he curled up on the settee and we were both satisfied with our morning’s entertainment. I was thrilled that he had made his own choices and played on the pier amusements, like other teenagers do.
It was an odd day of weather yesterday as storms were forecast and kept threatening, as the sky would turn black but in the main, we had sunshine. During one of the sunny spells, we walked along the seafront with Joshua letting him take the lead. he walked hand in hand with his Dad, while I had the dogs on a lead. Joshua decided when he needed to sit down and he made the most of the many benches along the seafront, choosing to sit, with his legs crossed and admire the sea view.He enjoyed being in charge of the walk and resting places. Again he walked quite a distance, before we decided to turn around as the sky had turned black and threatening. We sheltered from a brief rain shower in a cafe, where the dogs were allowed to sit quietly under our table, then carried on with our walk home.
Joshua had a nap and later we headed out again, this time to a cafe for afternoon tea. Joshua was delighted to get there, it is a favourite holiday haunt of ours so he started shouting ‘thank you’ as soon as we parked the car. He was excited as we walked in and sat down, waving at other customers so I was hopeful that he would eat and drink. But he got restless while waiting for his orange juice and victoria sponge to arrive, and I had to take him outside for a run around, to burn off some energy, as he was swinging on his chair and generally messing around. That did the trick as he both ate and drank once he got back inside, so we were able to enjoy our cream tea more. He was very taken with the young waitress, with a pony tail, and he stood waving at her for a while as we were leaving, but she did not see him. I suggested that he move so that she could see him better and try again, which he did and then he got the response that he was waiting for and only then, were we allowed to leave.
On the way back, we stopped at the hill where my parents ashes are now scattered, to let the dogs and puppies run around, although now it was very gusty up there. As we started walking, we saw a magnificent rainbow appear in front of us and the end was just over the place where we had scattered Mum’s ashes just days earlier. It is such a beautiful symbol of peace and it was there, just where, and when, I wanted to see it.It greeted us briefly then, as we walked towards it, it disappeared again, but it was there long enough to work its magic and to tell me that all is well. With rainbows and butterflies, it is certainly a very special place and it is a location where I too would like my ashes to be scattered when that time comes.
Joshua had another late lie in yesterday until after 10 am.Not only do they mean that he is well rested once he finally gets up, but it gives us some Joshua-free time too. I enjoy my early morning dog walks and I am confident that both boys will still be asleep when I get back again, so I am not even missed. I was on the telephone to BT about broadband when Joshua appeared expecting some breakfast. This week he is getting at least 12 hours sleep, typically 10 pm until 10 am which has to make him feel better and more alert.
We decided yesterday to go for a walk, with the dogs, along the prom to the next town along, which is about 2 miles away. We walked along the prom, one of us either side of Joshua holding his hands, with two dogs on the lead too ,as they are not allowed on the nearest part of the beach in the summer, and Joshua strode out happily. My husband carried the rug in his rucksack so that we could rest on the beach whenever he needed to and when we got the first part of dog-permitted beach, Joshua sat on the rug to recover while I played ball with the dogs. A brown jack russell cross began to chase Kevin around in large circles and they enjoyed a lot of exercise together as we looked on. His owner came over to talk to us to tell us all about her dog Max , who had been bought to calm down their autistic daughter, who also had epilepsy. The dog was a beloved family pet but had not had the desired impact on their daughter. I hear of several families who hope that a dog will have a beneficial impact upon a child with learning disabilities, as everyone has heard the tales of miraculous transformations that a pet has brought about. It is however a big responsibility on a puppy and I worry that it is not a guaranteed outcome but should be regarded as a bonus if it does happen.
Once rested, Joshua was more than happy to walk along the sands until we reached a cafe for lunch, where we sat outside in the sunshine overlooking the sea. We had not quite made it to the next town but almost, and we knew that Joshua would have had enough by the time he got back again, so we re-traced our steps back, this time stopping at another cafe for an ice cream. Our holiday cottage is at the top of a steep hill just above the beach, and spurred on by knowing where he was, Joshua scaled that hill and was less out of puff than his parents! I cannot recall how many years it is since he last walked up that hill ,so I was so proud of his determination and his exertions. He curled up on the settee for a nap when we got back to the house, but what an achievement and it has to be better for him than being pushed about in a wheelchair. It is better for my husband too as he is getting heavy to push uphill – I can no longer manage it and always defer to my husband, while I will happily push him on the flat. But his wheelchair has not yet come out of the car boot on this holiday, we carry it for emergencies only so I really hope that it stays there all fortnight.