Homeward Bound

Joshua excelled himself yesterday in terms of how well he tolerated the long drive home: we left our holiday home at 2 pm in torrential rain and we did not reach home for another eight hours. There was a potential 90 minute delay on our ferry due to ‘adverse weather’ as it was so windy, but thankfully we were only waiting 20 minutes before they squeezed us onto the car ferry. He seems to be happy enough while the car is moving, but he would not have been impressed by an additional hour and a half sitting in a queue. Joshua always loves the ferry and he was excited getting into the lift and emerging into the busy passenger lounge. My husband managed to find us three seats together and then he disappeared off to the cafe, returning with a plate of scampi and chips for him and Joshua – I was wary of sea-sickness so I stuck to my cup of tea. Joshua tucked into his late lunch and cleared up his Dad’s left overs too, so it is safe to say that he does not suffer from sea sickness like me.

After an hour, we were summonsed back down to the car deck and Joshua waved at all of his fellow passengers, just happy to be there. We were the third vehicle off and soon ,we were on our way home. Both Joshua and I enjoyed a nap and we only knew he was there after a few of hours, when he began to smack my headrest as he had had enough and wanted to get out. So we stopped at motorway services and he was thrilled to get out and stretch his legs. These services did not have Donalds but offered Burger King instead and I doubted that when it came to a cheeseburger, that he could tell the difference, so I queued while my husband bought us a healthier salad for tea. The service was nothing like as slick as at Donalds and as Joshua left half of his burger and fries, it seems that he was a connoisseur of fast food and he knows what he likes. But the break had served its purpose and he was happy enough to get back on the road . It was only with 30 minutes to go that my headrest was smacked once again.

He was delighted to arrive home and he surprised me by heading up to his bedroom, after just 5 minutes acclimatisation in the kitchen. I changed him into his pyjamas, while my husband unloaded the car, and he pointed at his audio book, indicating that he was ready for lights out already. So to my surprise he snuggled down so I left him to it, telling him how well he had done, and started to unpack a food bag and deal with  dirty washing downstairs. At 11.45 I decided to have a quick bath before bed and I had just lay down in the hot water, when Joshua opened the landing door and stood beside the bath with his leg raised, as though to climb in. I told him that it was too late really then I relented and he had a quick bath before heading back to bed; I figured that he had earned that treat for his patient behaviour in the car all day.

Pier Peers

Joshua slept in for 5 more hours than me yesterday and i enjoyed an hour long beach walk with the dogs long before he stirred, we were almost the only walkers out at 6 am. When Joshua did rise, it was clear that while he was still improving, he was still not 100% and still looked pale. His complexion was improved by a warm bath after his porridge and then we were ready to face the day.

The three of us set off to walk down the town, but Joshua dragged us left and down the hill towards the beach rather than right and uphill towards the town, once again he showed us that he knew exactly where he was an what he wanted to do. He was beaming as he strode out along the prom arm in arm with a parent either side, and we decided to test him, to let him call the shots and see if he remembered the Pier from the summer. As we approached he slowed but did not pull to go in at first, not until it looked as though we were going to walk him passed, then he pulled back.We walked through the noisy pier, full of flashing lights, and he found his way back to the basket ball machine where he had spent my money back in August. He knew what he wanted and so we fed the game pound coins once again and he re-found his throwing skill.

The cafe he had loved in the summer was shut as they close off the external parts of the pier for the winter, so we sought out a new pier cafe by the entrance, that we had not used before and selected a table by the window, looking out over the wild sea. Joshua’s throat was still sore as he rejected the toast we bought for him but he drank a lot of orange juice. But his eyes lit up when the waitress delivered a bowl of chips to an autistic young man wearing ear defenders, so even though it was only 11 am, we weakened and bought him a bowl too, and of course we all three of us tucked in.

It turned out that this cafe, for some reason, seemed to be ‘the go to place’ with young adults with learning difficulties, as soon the two young men were joined by a young lady in a wheelchair and as we were leaving, a group of adults was led in by their carers. Maybe it was the sea view, the ramp access, the lights and noise of the amusements or the delicious chips, but the parties with a young person with a disability out-numbered the neuro-typical family groups yesterday morning, which rarely happens but it made me feel very at home.I was delighted to see so many SEN young people out in the community, enjoying themselves on the pier.

Sadly that was the extent of Joshua’s exertions for the day, he managed to get home again, where he parked himself on the settee and curled up for a nap, he did not leave his comfy spot for the rest of the day. Hopefully he will feel better and have more energy today, though he has generously passed his germs onto his parents so we might all be fighting each other for a place on that settee today!

Shooting hoops

Simple Pleasures

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.

Day 13 of Holidays

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.

Day 12 of Holidays

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!

Day 10 of Holidays

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.

Day 9 of Holidays

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.

Day 7 of Holidays

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.

rainbow on Culver

Day 4 of Holidays

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.


Day 3 of Holidays

After our long drive here, I like to have a day when we do not get back in the car, but we walk around and yesterday was that day. It was drizzling on my early dog walk but it was still warm, and once the rain stopped, the day got hotter and hotter. Joshua obliged beautifully by enjoying another late lie in, which enabled me to cut the grass. It was always the first thing that Mum did as soon as she arrived, she would unpack the car and would get the lawnmower out, so it was making me uncomfortable knowing that I had left it for a full day! It looked so much better once the grass was cut as it hoovered up the fallen twigs too, so it looked cared for again. Joshua woke up only once the work was done, which is a good trick.

The highlight of the day only came in the evening, when we had taken a walk down to the pier as he enjoys the noise, lights and young people at the amusements there. Again, it is the first time for years that he has walked there, rather than us taking the wheelchair and once the beach and pier were in sight, he raced there, pulling us along in his enthusiasm to get there. He loved walking through the slot machines and I even found two 2 pence coins in my purse, which we wrecklessly  blew on the penny falls machine, winning 6 pence, which of course we ploughed back into the machine, but we had fun in the process. We walked along the wooden pier where our appetites were awakened by the tasty smells of a cafe there, so we did a detour for egg and chips for tea, which were surprisingly tasty.

Joshua got restless while his Dad was still eating, so I took him down to the end of the pier where he spotted the dodgems with three kids bumping away. He was fascinated and pulled to get into a bumper car too. I explained that we would go and get Dad and he was unimpressed as we walked back to the cafe to fetch him. It was quite an operation getting both of their long legs into the dodgem but they managed it and I paid the £2 fee and off they whizzed. They went round and round, with Joshua beaming all the way around. He had known what he wanted and by the look on his face, it had lived up to his expectations. They spun round and round the track on their own, thankfully nobody else was there as he might not have appreciated being banged, and he was grinning all of the time. It was such fun to see him enjoy a ride like that with his Dad, as usually he rejects anything in a fairground. But mainly I loved how adamant he was over what he wanted to do, our passive, compliant son has been replaced by a walking, determined teenager who is able to make choices and stick to them, until he gets his way. It is about time!