Now the end is near…..

Well it is time to pack up and clean up and head home  and back to work in the morning. We have been truly spoilt with amazing weather for our full stay and the sun is out again this morning. We enjoyed another afternoon out on the beach yesterday, which started with lunch in a beach bar: Joshua was in his element with live music, a sea view, a glass of orange juice and some fish and chips, what more could anyone want? We all dozed off our lunch on a rug on the beach but were sadly disturbed by Joshua having his third seizure of the holiday, so thereafter he lay dazed on the rug but would not close his staring eyes. My husband and I took our last swim in the sea , leaving Max the dog in charge of Joshua on the empty beach.

Joshua had some tea back at the house and then we headed out again to watch the final performance of the local band that we follow, they were not performing until 9pm. It was a totally different atmosphere last night to the previous week as the tourists and visitors had mostly gone home and so it was a smaller audience, of mainly locals and the staff who had been manning the food and drink stalls for the past week. Joshua enjoyed most of the act, only laying his head on his knees, once or twice but he was jigging in his wheelchair for the grand finale. A lady sat next to me and asked when he would be dancing, as she had seen him the previous year and she was disappointed when I explained that he was rather wobbily still from his earlier seizure. But his enjoyment of the music had clearly made an impression on her.

We stayed chatting after the show and then enjoyed the freedom of the emptier streets with the wheelchair and it was easier to leave, knowing that the entertainment was over too. We will be taking a very weak Jack home with us too, as he has defied the vet’s prediction and has kept going. He will not be galloping across the sand for his final beach walk, but he will potter in the garden before we set off, saying his final goodbye to a happy holiday home.

We are very fortunate that Joshua is a patient traveller, as we have a six hour minimum journey ahead , but the long drive has truly been worth it. Until next time, my happy place.

Freedom of will

We had a lovely lazy afternoon on the beach yesterday, back on the loungers that Joshua prefers to our rug! We soaked up the sun, dozed, had another swim in the sea and watched the people around us. I cannot remember a day when we spent so long on the beach, previously Joshua has been restless to move on but he dozed more than any of us. So he should have been full of beans later, as he was well rested. But when we got home, he curled up on the settee for another nap after his tea. He was very reluctant to head out again, when I explained to him that we were going to watch the firework display.

But he was out-voted and so I re-dressed him in warmer clothes, and we headed out at 7.30pm to drive to the firework display. The town was heaving and we struggled to find somewhere to park, such is the attraction. We walked down to te seafront where the display was taking place, I let my husband push the wheelchair through the crowds as I am not assertive enough in a crowded area. By this time Joshua had perked up and was enjoying the buzz. He watched the first five minutes of the firework display, but then he had had enough and rested his head on his knees. We try to include Joshua in as many rich experiences as possible but as they say, you can lead a horse to water, but cannot make it drink, as we cold not make Joshua enjoy the display.

I would have preferred Joshua to enjoy the entertainment, but it does not bother me when Joshua nods off with his heads on his knees. But I learnt yesterday that my husband feels embarrassed by that: He thinks that  we will be judged as bad parents, dragging that poor disabled boy out against his will! That has never crossed my mind and reminds me how differently we see the world. I do not worry too much about what strangers think of our family, but I have always been pleased that we take Joshua out and about and expose him to so many different sights and smells. I feel that he is luckier than most and if he chooses to nod off, while being entertained, then that is his choice. He was, I note, not so exhausted that he could not raise his head and jig in his wheelchair to the live band who were performing after the fireworks. So it is simply Joshua exercising his free will by opting out and I applaud that, it would not, after all, be normal for a 15 year old to share in all of his parents’ choice of activities.

Horsing around

As our holiday nears its close, thoughts of work and home are filtering into my dreams as my mind clearly gets drawn back to the real world. But the blue sky out of the dining room window reminds me that we still have two more full days of fun in the sun to enjoy. Tonight we will head back to the carnival town where they end the week with a firework display and another performance by the band we like, which will be fun if the crowds are not too crazy. I find pushing a wheelchair through crowded streets pretty claustrophobic as nobody looks where they are going and they are forever bumping into Joshua. At first, I apologise if I ram his foot plates into their shins, but after  a few bumps, I seek pleasure in getting my revenge on careless pedestrians. It is a real insight into how oblivious most of the general public are to disability, to push a heavy wheelchair through a crowd.

Last night, we were there watching a band , enjoying the music, when I saw Joshua stick his large boot out and trip up a drunk young man, who was mortified. He stumbled then apologised to me as his carer and I looked down at Joshua, so then he grabbed Joshua’s hand and apologised there too. Little did he know that Joshua had tripped him up deliberately, so I guess he gets pleasure in his revenge too, just like his mum. It is a good game sticking his leg out like a horse jump and watching others fall over it, and it appeals to Joshua’s slap stick sense of humour I think and keeps him entertained.

Joshus is still amused by other people hurting themselves and by human noises such as burping and sneezing, he is shocked by the noise, then giggles and then demands a repeat performance, so his sense of humour is in keeping with his toddler-level  cognitive development. He enjoys his fellow students being naughty and being told off in class too, that is hilarious.There is plenty of exaggerated slapstick humour in his classroom and Joshua joins in. But I don’t mind what he finds funny, I just love to hear him laugh. He has a deep, uncontrollable giggle which is priceless.

A Day out together

I am delighted to report that our dog, Jack, who was not expected to survive on Monday night, is still with us and if anything, is getting more mobile. We had discussed our plans for leaving him at home while we went out for lunch then coming back to check on him, but he had his own ideas. When I opened the car boot, he tried to jump in, he was adamant that he wanted to come too. So we made him comfortable and he got his way, talk about resilience, he even enjoyed a short walk after lunch too. He seems determined to make the most of what will be his final holiday.

We  headed into a town with a week long festival, where we browsed through the crowded streets enjoying the stalls and inpromptu music. We settled in a bar with an external stage, managing to get seats right at the front and we waited for the local band that all three of us enjoy listening to. When they began to sing, Joshua jigged in his wheelchair and waved his arm around in delight. But by their penultimate song, he could not hold back any more and he gestured to get out of his chair. Wild horses would not keep him away from the front of the  stage and the loud speakers, so we danced to their finale. The band know Joshua and have watched him grow over the years that we have followed them and so they do not seem to mind this groupie. In fact, my phone this morning has shown me a video of us both dancing to exactly the same song exactly three years ago today, with both of us looking younger. His evident enjoyment of the music, makes others smile and one lady , a stranger, came up to us while we were dancing and grabbed one of each of our hands and gave them a squeeze, but said nothing.

Joshua has always loved music, he feels it I am sure and so I am happy to let him express that enjoyment and to share it with others.

I get knocked down, I get up again

Resilience is one of the  things that having a child with special needs teaches you. We get so many knocks along the way. just when you think that things are settled and you are heading for a period of stability, then wham something unexpected will knock you off your feet. Yet with practice over the years, special-needs parents learn how to pick themselves up off the floor and how to carry on. They say that ‘whatever does not kill you, makes you stronger’ and that might well be the case. When you have fought tooth and nail to get your son into the best school, or when you have made the painful decision to opt for brain surgery, then other setbacks pale in comparison. It certainly helps you not to worry about insignificant problems, as these are put firmly into context as you focus on what really matters.

I do not think that having Joshua has made me tougher, but it has certainly made me think differently about the everyday problems that come and go. I can recall a friend who had her baby at the same time as Joshua was born, telling me that I had the right personality to cope with him, whereas she was a nervous wreck and would worry continuously. I may well have the right outlook for survival, but she would have changed, as I have done, if she had been lucky enough to have been Joshua’s mum. I can also recall going for a walk with my mother in law up our lane, just as Joshua had learnt to walk in his new splints and she was gasping with anxiety at every step, terrified that he was going to fall, yet I was letting him run. Another friend was hovering around the trampoline ready to ctach my bouncing son if he should tumble off, amazed at how casual I was about the potential risk. But I was focussed on the fun he was having in both cases, which seemed to me to be worth the risk.

I am not immune to anxiety but I do seem to have developed a knack of  taking many of the challenges that we face with Joshua, into my stride, probably for survival. I was dreading letting Joshua go away for respite for instance, initially I resisted it like mad, but now that I have satisfied myself that he is both happy and safe there, I have no more concerns and we look forward to the break, as we should do. I no longer sit beside my phone in case of emergencies, I am much more relaxed about being apart from Joshua as I have complete faith in his carers there.

None of us know what is around the corner, but hopefully when we get there, we will face it head on and even if it knocks us off our feet, I have no doubt that I will get up again as that’s just what we do.

So just let me be beside the seaside and I’ll be beside myself with glee

We had a quiet day yesterday , mostly staying home, as Joshua did not sleep at all the night before, due to the after-effects of his seizure. We managed to keep him in bed all night but that was through  a combination of films on my ipad and wrestling him down onto the pillow. I did the first shift from 10ish until 4am, but I gave up then and woke my husband to take over from 4 so that I could have some sleep too. When I woke three hours later, I crept into Joshua’s room , delighted to see him lying curled up in a sleepy position, but as I peeped at his eyes, they were still staring, blood shot and open! His eyes stayed that way all day too, he looked awful, as though he really needed a good sleep but his brain simply would not allow it.

He stayed indoors all day, wearing his helmet, as he seemed to be threatening more seizure activity, so he simply alternated from the settee to his bed and back again. It was such a sunny day that at 6pm I decided to take him out along the promenade for some evening sunshine with the dogs. There was not a cloud in the blue skies, it was stunning, and Joshua jigged in his wheelchair and enjoyed the beach tour too. My husband took the dogs onto the sand and they enjoyed the play too, as they had become resigned to a garden day.

As Joshua was brighter than he had been all day, we opted for a spontaneous meal out in a beautiful restaurant overlooking the beach. They squeezed us in and we watched children and dogs playing at the shore, then two horses galloped by as we waited for our order, so there was plenty to occupy Joshua. He ate more of his fishcakes than I expected him to but my husband and I virtually licked our plates, our dishes were so tasty, so it turned out to be a very satisfying walk indeed. Whether or not it was the fresh sea air, change of scene or the meal, I am not sure, but when we got back to the house, staring Joshua finally closed his eyes on the settee and he continued to sleep once I transferred him to bed, where he is still asleep now, which is a much better outcome than I was dreading.

 

I do like to stroll upon the prom, prom, prom

We went to a country show yesterday for the day so Joshua had been warned that he had to get up and out by 10.30, which we did not quite make but we were on our way before 11, which is good going for us. The setting was spectacular – blue skies, blue sea and white cliffs were the backdrop for all of the white marquees and the sun shone brightly all day long. We browsed up and down the rows of stalls and visited the craft tent, before settling on a hay bale to enjoy our favourite local band, who we have been enjoying for years now.

As they were setting up , Joshua enjoyed a sausage roll for lunch. As we were in full sun at 1pm, my husband bought him a sun hat which of course Joshua would not keep on his head. So I stood next to him, holding his left hand, to prevent him from removing his new hat. I had been there about a minute, when an elderly man sitting behind us told me to sit down as he could not see. I explained that I just needed a short while for Joshua to forget his hat was on, and then I would be out of his way. He continued to grumble at us and so I knelt beside Joshua and asked if that was better? The hat was thrown off and I now felt uncomfortable and so we moved into the shade of the beer tent, from where we watched the rest of the performance. The man’s wife approached us during the show to apologise for her rude husband and excused it by explaining that he had alzheimers, so of course, my sympathy went to her having to deal with his grumpiness and aggression. I told her that she had no need to worry and I tried to make her feel better by telling her how much more pleasant it was in the beer tent anyway.

But I also felt the kindness of strangers in the tea tent later on, where Joshua had a seizure at the table, possibly brought on by the heat. We both tried to make him feel more comfortable, with my husband seeking out a damp cloth to cool him down and I tried to keep his straightened limbs away from the wooden tressle table, where he was midway through his victoria sponge. I then put our rug on the table for Joshua to rest his head as he recovered. We had been closely watched by many other customers and while I was on my own with recovering Joshua, she approached to offer her assistance and gently touched my arm as an indication of her support. I told her that we had things under control, but thanked her and was very touched by her offer, as so often people stare but do not know how to help, so say nothing. But we moved on once he had recovered, but sadly we knew that it meant that he was not going to sleep last night as the aftermath.

Oh I do like to be beside the seaside…..

We have now been on holiday for a full week and the great news is that we have another week to go! I think that we are all fully adjusted to holiday life now, Joshua sleeps in until midday and I even slept until 8am this morning. We had a lovely afternoon on the beach yesterday and we even splashed out on three loungers, with mattresses, to make ourselves comfortable. Our loungers were right on the shore when we arrived and Joshua excitedly watched the tide recede and he loved watching the people playing in the sea with surf boards and footballs. So it made for an unusually relaxing afternoon as he was happy to stay on his lounger as his eyes were occupied. So my husband and I took it in turns to take naps and I fetched snacks and drinks to consume.

Towards the end of the day we went for a swim in the sea, I was more reluctant than my husband but we took it in turns to stand with Joshua on the shore while the other dared to splash through the waves. Joshua enjoyed watching but he was not even willing to paddle in the sea. As ever, it felt cold at first but once the shoulders were under the water, it felt warmer than the breezy air. We teased Joshua by chasing and hugging him in our wet  swimming costumes so that he got a flavour of the salty sea!

We dried off back on our loungers and my husband bought cups of tea and a slice of madeira cake to warm us up. Again unusually Joshua was happy to return to his lounger, instead of insisting on leaving once he had stood up, so we stayed a while longer. We were joined by a father with an autistic teenager, Matthew, who lay in the sand, splashed in pools of seawater and asked his father endlessly for the time and what was happening next. His father was clearly exhausted by his visit to the beach and in the end, he put headphones on to listen to music rather than face any more questions. On this occasion, Joshua was not such hard work, but he has had his moments on the beach too so I could empathise with Matthew’s Dad.I really appreciated our afternoon on the beach yesterday and I hope that we might get the weather to repeat the experience again next week.

Living the Dream

I am dreaming more vividly while on holiday and I guess that is because the quality of my sleep is different to at home, or perhaps because my mind is not as active during the day , as I am more relaxed, so it is busier while I am asleep. Even my husband warned me not to go paragliding, as he had dreamt that I had blown far away and then crashed to the ground while he was watching! I have made a mental note never to volunteer, just in case this was a premonition of my demise.

So it got me wondering, does Joshua dream during these big 12 hour sleeps that he enjoys? Joshua sleeps so soundly that surely his mind, impaired though it is, must create images and stories for him at night  He has never woken up screaming from a nightmare that I have known. While Joshua’s understanding of the world will be different to most, surely dreams are sub conscious. I would love to think that Joshua is able bodied in his dreams, that he can run freely and has no use for a wheelchair and that he is not hampered by seizures. In his dreams, Joshua might be able to move about with ease, make himself understood and eat hot chocolate fudge cake endlessly…

Perhaps Joshua enjoys his long sleeps, not just because he is an exhausted teenager, but because he enjoys real freedom in his dreams. Maybe in his dreams, he can experience life as a ‘normal’ boy and he has no limitations. Even if it is not true – and lets face it, I am never going to find out for sure – I find this a comforting idea and I will continue to allow him to lie in until midday, just on the off-chance.

Free-wheeling

It was a wet day here yesterday and so we went shopping in the afternoon. My husband had adjusted the brakes on Joshua’s wheelchair in the house in the morning and sadly I had forgotten to pack the footplates – or ‘legs’ as we call them. So it meant that poor Joshua had to exercise his muscles as we walked around, by holding his legs straight out in front of him as we toured the shops, to prevent them from dragging on the floor and he was surprisingly good at it.

We found quite a few stores that were inaccessible to him, which is unusual these days. When we stopped for a hot drink and a sandwich in a well known coffee shop chain, I had to move his wheelchair to let other wheelchair users get by as the aisle was too cramped. We followed my husband to an outdoors shop, and found that he was upstairs looking at walking shoes. The sales assistant asked if he could help us and I asked where his lift was to join him, but there was no means of getting a wheelchair upstairs so we waited downstairs.And finally we had afternoon tea in an independent cafe, in an old building, and Joshus had to vacate his wheelchair to walk inside up the steps – he is fortunate enough to be able to do that, many wheelchair users do not have that option, so they would be barred.

I thought that it was a legal requirement these days to make all public buildings accessible to wheelchair users but, our experiences yesterday suggest that this is not the case and I find it frustrating. Joshua should have the same rights as anyone else to go wherever he wants to and he should be able to move around as freely as able bodied consumers, with as little fuss as possible. Wheelchair users do not need to made to feel as though they are an inconvenience or a burden, but adaptations should be made to make stores accessible, even if it does mean giving up precious retail space to install a lift or ramps.A sign saying ‘disabled customers are not welcome’ would not be tolerated, but effectively that is what these shops are saying by not making their shops wheelchair-friendly. It is not good enough for us to restrict ourselves to the places where wheelchairs are catered for, we will continue to access all areas, to make a point as we go and to try to make staff realise how non-inclusive their facilities are.