The Heat is On

We are almost at the end of our fortnight’s holiday and it has been amazing, We opened the house windows when we arrived, as it was warm but grey skies, and it has gradually got hotter and hotter, so the windows have remained open our whole stay. It is an old house with sash windows and so if you open the top and bottom windows, there is a cooling breeze that comes in. We have even opened Velux windows at the top of the house – which I have never seen open! – and have wedged the back and front doors open to give a through draught too. We always come this same two weeks in August, for as long as I can remember, and I have never known weather like this. The grass has always been dry and brown in the summer here, as opposed to the lush green grass in Yorkshire, but it is scorched now and the ground is rock hard ; when it does finally rain, the water will just run over and off the solid ground and there will be a high risk of flooding. Is this global warming or just a random heatwave? We are told to expect a future like this.

For a fortnight’s holiday, all the sunshine, heat and blue skies feel like a treat. We have not once needed the coats and fleeces that we packed, just in case. It has been delightful walking the dogs under the early sunrises and swimming in the warm, calm sea. But this weather and climate is not sustainable for food production or even gardens , where we are staying had the first hosepipe ban in the country imposed last Friday. Last night the temperatures hardly dropped overnight, making it difficult to sleep.

Most of all, the heat has a big impact on Joshua : he really cannot risk spending too long in the heat as it is the worst trigger for his seizures. We have been able to manage it here, as thankfully this old house stays pretty cool if it is ventilated. But it has meant that, for Joshua and the dogs’ sake, we have been out and about much less than in our usual stay. When we went out shopping the other day, we got out of the car, felt the searing afternoon heat, and dived straight into a nearby pub for a drink and some lunch. We then used the pub as a base for Joshua and the dogs, while my husband and I took it in turns to look around the shops separately ! We managed a short walk around the corner to an ice cream parlour and then headed straight back to the air conditioned car and back home.

We have been heading down to the beach most days after 5pm, with Joshua in his wheelchair and 4 dogs. We have to begin the trip with a treat for Joshua, which means a toasted teacake at a café before we can head down onto the sand. The cliff behind means that the beach is in shade by this time of day and we set Joshua up on the rug, where he obliges by curling up for a snooze. We tie our escapee dog, Betty, to one of the groynes and then we strip down into our swimsuits and run into the warm sea. It is so refreshing and we bring each dog into the sea with us, one by one, with varying degrees of delight. As well as being cooler and shadier than the peak of the day, the beach is also less crowded, as everyone else seems to think it is too cold to swim at that time of day, which suits us better too.

So we have adapted our holiday routine to be able to make the most of these hot days. That plan did not work last night as Joshua was too hot and bothered, and his feet were too swollen, to squeeze his splints and boots back on after his tea, as we had planned. He was much happier to stay in the house, wearing very little, to try to cool down, so my husband went for a swim on his own yesterday, while we stayed home – I had after all had my swim at 7am with some other local mermaids, so it was his turn, if we could not swim together.

So today is our last full day of holiday, as Sunday will be taken up with packing, laundry and cleaning up after ourselves, before we head home on an afternoon ferry. I will try hard not to sulk about going home, as we have today as a bonus day and we will be back in the Autumn, so I should not be greedy. We have a busy week back at home planned and of course, Joshua will be delighted to return to daycare ; it seems a very long time since he was there last.

Respite Rollercoaster

Those of you who follow our story will know that since April this year we have been investigating the possibility of an alternative respite provider, as our previous provision was unable to have Joshua back due to a lack of staff. We looked around a nursing home that provides respite back in June and they said that they could meet his needs then and so they were asked to supply costings to our social worker. In the meantime in July, I emailed questions about transition visits for Joshua and about getting to know his 1-to-1. I was shocked by the manager’s response to my email : no transition visits could be organised, he could visit with us his family before his first overnight stay but that was all they could offer. Also they could not guarantee which of their 70 staff might be working as Joshua’s personal carer and they could not guarantee any consistency from one visit to the next. Neither of these replies reassured me that they had policies that would be helpful for Joshua to settle in, and add that to their two missed appointments back in April, I was certain that this provider was not right for Joshua, but I got no reply to my latest email.

At the end of July I asked my social worker if she had heard anything more from them and she chased them, telling me that they were just having a team meeting then they would be in touch with me direct. On 10th August I received her email which made me both upset and angry : it informed me that because Joshua was mobile and most of their residents were non – ambulatory, there was a risk to both and it advised me that they were planning a new build, so it would be bad timing to unsettle Joshua taking him on just as they were going to move to temporary accommodation. These were both valid concerns, both ones that we had raised back in June when we had met the manager and looked around the place, but at the time they had dismissed both as unimportant. Having discussed these concerns, amongst others, they had confidently emailed on 20 June to tell me that they could support Joshua and meet his needs. So what had changed since then? Certainly not Joshua!

I was furious that they have wasted our time consistently for the last 4 months, and have contradicted themselves, in writing. I absorbed what they were saying overnight and my husband logically reminded me that we did not want them either , so no harm was done. But that was not the point for me; in June they said they could meet his needs and accept him, yet by August they could not! I was going to turn them down, as we had decided that it was not a good match for our son, but they beat me to it and turned him down first. How dare they reject Joshua? Who I had told several people would have been a breath of fresh air to that place. How dare them mess around with people’s lives like this? For all they know, we are at the end of our tether, having not had respite for 2.5 years and she casually sends an email like that, two months after accepting him. She does not know that our original respite provision is coming back on line for us next month and she did not know that both my best friend and sister have kindly had Joshua overnight to give us the break that we have been missing. For all she knew, they were our only hope of some respite, and she withdrew an offer of hope that she had made back in June.

I suspect that it is me and my emails which are the reason that Joshua has been turned down : after our visit on 20 June, I wrote that there was a lack of fun at their establishment and that, while awake, Joshua would need entertaining and a lively 1-to-1 carer. In July I requested transition visits and an assigned carer, but was told that neither were possible. Perhaps she thought that I was too demanding and too stroppy, but I am simply trying to ensure that they can meet his needs and that it is a good match. I fear that they expected us to be so desperate that we would accept anything to gain a ‘night off’; well, that is simply not the case and our son will not be farmed out to somewhere inappropriate just so that we can go out for a meal!

So I slept on her email, well mulled it over, and early the following day I ranted to our social worker in an email about my anger and disappointment. I told her my suspicion that it was actually me who was being rejected and I told her that I was too emotional to reply to them still, but that I would once I had calmed down, so that I could write a professional email. My social worker replied that she understood my disappointment and that she hoped Joshua was not rejected due to me. She urged me to give them feedback, if nothing else so that they could learn from it for the way that they treat other families in the future.

I had calmed down enough by yesterday afternoon and sent that email accepting that Joshua and their establishment were not a good match but explained how badly they had handled our application, from two missed appointments in April, their slow response to any emails and then their inconsistent response to Joshua and his needs. I doubt that I will ever hear back from them as they have ignored criticisms before, but hopefully it will have to be investigated at least and I felt better for getting all that frustration off my chest.

Social care have to realise that they have a big impact on families’ lives and our time is precious too. How we have been treated further suggests that we are invisible and that we do not matter, as they can change their minds or not turn up for home visits without warning us and it does not matter. I hope that my complaint will show them that we are not invisible, that our feelings do matter and I will not take being treated badly, lying down.

Culver Custom

There is a chalk cliff that we can see from our garden, that holds a very special place in my heart. On our annual summer holidays here as a child, there was always a walk ‘up Culver’ which seemed challenging at the time. As I continued staying here as an adult, then as a parent, we made our own tradition : we would walk up, have lunch at the pub at the top, and then walk down again. When Joshua was younger, pre-surgery, he could manage that walk, but he no longer has the stamina or mobility any more to manage it. So now we have to walk it separately, my husband tends to walk the dogs up there and I drive up with Joshua to meet him at the pub. We eat a tasty lunch with spectacular views and then I tend to walk the dogs down again, meeting my men on the beach at the bottom of the hill – that is how we tackled it yesterday in the heat. We always choose the best weather day to ‘Do Culver’, even when we come in the Autumn or February, we aim to complete this walk. Currently the path is very dry, sandy and rock hard, but often when we come in the Autumn or February, it can be very wet and muddy.

My parents, and grandparents and Aunt and Uncle’s ashes are scattered at the summit, so there is another very special reason to make the climb. We were with Mum when in 2015 we scattered some of Dad’s ashes up there and then we went to the pub to toast him and then four years later, we repeated the process, in the same location, with Mum’s ashes. So I like to sit up there and chatter away, bringing them up to date on family news. There is no grave to visit, so this is the closest thing that I have. My future nephew in law sweetly proposed to my niece up there last year, as he wanted her grandparents to be involved – a kind gesture which of course made me cry . So it is a significant place for our family and where I have asked for my ashes to be scattered too, to enjoy that sea view for all of eternity.

I know that it is just nature at its best but in the summer months there is a small pale blue butterfly, called the Chalk Hill Blue which inhabits this environment. I first noticed them when we scattered Dad’s ashes back in 2015, they were fluttering around as we did the deed. They are so delicate and almost ghostlike, that I began to associate them with his spirit. When we fast forward to summer 2019, there were two blue butterflies flying around as we scattered Mum’s ashes, as though my parents’ spirits were released into these beautiful lifeforms. It has been so hot this week, that the butterflies are at their peak and when I have been walking up on Culver Down, hundreds of Chalk Hill Blues have been fluttering around my ankles , so that I am walking through clouds of them, as though they have all come to greet me and I have found it to be an emotional and beautiful experience. I tried to capture them in a photograph but as they are so small and I had four boisterous dogs with me, that was not easy so I settled to just enjoy them in the moment instead.

But it is a place full of emotion for many other families, for much sadder reasons, as it is a popular choice for those desperate souls who take their own lives. I was moved the other morning when I walked to the end of the cliff with the dogs : firstly I saw frequent signs with a phone number for ‘The Samaritans’ asking for people to talk to them. Then I saw numerous tributes to family members who had chosen to jump off the cliff and end their lives. I made a point of reading their names so that I could think of them, even though I did not know them, and their dates meant that many were dying far too young. I then started to think that the numerous butterflies were all of the spirits not only of my deceased family, but of those who had tragically died up there too, which made me more emotional.

As I said, Culver holds a very special place in my heart and I will continue to walk up there, communing with the butterflies, just as long as I am able.

We are not Alone

It was very hot on holiday yesterday, so we were not out and about much during the day. Joshua was getting stir crazy in the house around midday, so we went out for a drive and he started repeating his favourite word ‘café’, as he had worked out that it was lunchtime. We pulled up at a car park on the cliff and walked the short distance to a café, with four dogs in tow as it was too hot to leave them in the car. Joshua was excited but as we approached, we could see that almost every outside table was full and those that were empty had ‘reserved’ notices on them. So it looked as though we had raised his hopes in vain and I prepared myself for the backlash. One diner saw us looking and suggested that we ask about a free table, as she thought the reserved table had arrived and was sitting elsewhere. So Joshua and I queued to ask, there was a lot of huffing and puffing from the owner, who said, thinking it was just us two, that we could squeeze onto a table with another couple. But when I explained there were actually three of us, he shook his head in dismay – the sunshine had brought everyone out to his scenic eatery.

As we were about to turn away, a kind man tapped me on my shoulder and said that he and his wife were almost finished and we were welcome to join them. I gratefully accepted and so we sat on their table, while he finished off his huge slice of cake. I thanked them again and explained that Joshua would not have been happy to leave, once he had set his heart on this café and had even been there, he would not understand that it was full. They looked at Joshua, smiled kindly, and said that they understood totally as they had ‘one like that’ too . Their kindness immediately made more sense, as they appreciated the gravity of turning him away, empty handed. They asked about Joshua and even offered to stay and hold the table with him while I ordered. I was overwhelmed by how generous they were. Once they left, my husband and our pack of hounds joined us in the shade of a parasol and ate a delicious lunch in the sunshine overlooking the bay.

My husband walked the dogs home from there along the cliff path, while I drove Joshua home, where he was happy to retreat back onto the settee, in the coolness of the old house. I pottered about the house doing jobs, as we were expecting an engineer to attend to fix the security alarm, which had developed a fault overnight, when it had started beeping from 2 am. The engineer arrived soon after 4pm and immediately started pushing buttons on the alarm panel. I explained that I did not know why it had triggered an alarm, that previously it used to be Joshua’s fault as he used to pick up the telephone and mess around with it, then not put it back on the hook properly but this was no longer the case as we had a new telephone, in a new location, that was no longer as tempting to him. The engineer gave me a knowing smile and said ‘Oh yes they love fiddling with buttons!’, and he revealed that he has two autistic sons, of 12 and 14. He stopped working on the alarm to tell me more about his sons and their family life and then he popped his head into the lounge, to say hello to Joshua. I suspect that only someone with an intimate knowledge of special needs, would actually acknowledge him and make the effort to introduce themselves to Joshua, who was lying on the settee watching ‘Madagascar’.

He went back to the alarm and fixed it, blaming interruptions to the telephone line, and then made sure that he said goodbye to a smiling Joshua before he left, which left me with a warm glow inside. Both of these strangers, saw Joshua for who he was and acted with kindness, that was born out of personal experience. I would like to think that in their shoes, I would also have shown kindness and understanding as it means such a lot , not only to Joshua, but to me too. Disability can make the person, and their carer, feel invisible at times, but yesterday, these strangers took the time to notice us, and it meant a lot.

Day 9 : Holiday Fun & Games

Joshua soon slides into his holiday routine, which is different to how he behaves at home. He has been tending to wake up around 10 am, raring to go then. That suits me well as it gives me plenty of time for my Mermaid swimming and dog walking before he gets up. We were out down the town yesterday by 10.30, which is early for us as a family. I bought myself some new sandals that I had been eyeing up in the shoe shop window and now they were in the sale, it was the right time to buy! We walked to the Post Office and then Joshua’s patience was rewarded with the inevitable stop at a beachfront café for drinks, as it was already feeling hot.

That was enough excitement for Joshua for one morning, as when we got back, he curled up on the settee for a nap. We ate lunch at home, as it was too hot to venture out again and it was not until 4.30pm that we headed out again, down to the beach for a swim. Joshua knows this new routine now: into the wheelchair loaded up with towels, although each time he has tried to complain and persuade us to use the truck instead of walking. We take all four dogs so have to walk a bit further to find the dog -friendly parts of the beach at this time of year. Joshua is bribed by a toasted teacake at the beach café before we head onto the sand, where we set him up on the rug close to the shore. he flops down onto the rug and curls up for a nap, while my husband and I get ready to swim. Our two best behaved dogs are loose on the beach, playing around and pleased to see every other dog who walks by, but the other two have to be tied up as one is a flight-risk and the other is a fight-risk.

We test out the sea water and it is surprising warm now that it is after 5pm and one by one we encourage each dog to come into the water with us. Kevin the jack russell is the best and most willing swimmer, so long as there is a ball to fetch and he was out of his depth for a long time. The others had to be led in and swam back to shore, where they ran to the rug and shook all over the dozing Joshua, making him shout. So then Joshua stands up and he happily throws the ball for the dogs to fetch, within their depth. He plays with the dogs in this way while we get dressed again, until we are all ready to leave the beach – well, except Yogi, our young border collie, who lies down on the sand in protest, he has not had enough fun yet.

This is how we have ended up eating out two nights at a seafront bar on our way home, as they have good food and a terrace facing the pier, and twice it has called out to us as we approached it, as neither of us fancied cooking and yet the swim had made us hungry. Last night we resisted that bar, we took the dogs home and drove to a local KFC, one of Joshua’s new favourites so he was very excited. On the way home, we stopped in a beer garden too, so it turned out to be a big night out after all. Only the swim was planned when we headed out, the KFC and pub ideas just popped up and both were very welcome treats on our summer holiday.

The Life of Riley

Now that we are both retired from our jobs, you would think that we would not appreciate our holidays as much as when we were working, but that is simply not true. It will be certainly be easier to return home next weekend, knowing that we will not be heading back into the office on Monday morning, I often suffered from the end of holiday blues and never wanted to leave; in fact I always booked flexible ferry tickets so that we could delay by an extra day, as heart always ruled over head when it came to leaving. But now I will be better at leaving, and that is also helped by the knowledge that we will return in 2-3 months’ time, so I do realise just how fortunate I am.

But our life on holiday is very different to the life we lead at home : we eat out more, although we tend to eat out for lunch and cook for ourselves in the evening. We have enjoyed several delicious pub lunches while on holiday, which would only be a special treat when at home. Last night in the evening, we took the dogs down to the seafront to buy them, and us, an ice cream to celebrate Ruby’s 11 th birthday. Even at 6.30pm it was hot and there were still bathers in the sea. Then we collected a Chinese takeaway on he way home – bliss.

Even though this is a holiday home, so a home from home, there are fewer chores to do when we are here, although somehow they are more pleasurable here : I spent some time yesterday, washing the cobwebs off the open sash windows as they have been open since we arrived due to the heat, yet I have never done that at home! Despite the sand that we, and the dogs, are bringing inside on our feet everyday, I do not hoover up everyday, as there will be more sand tomorrow.

We have sun loungers in the garden and we have both laid out for a short while in the sun , yet we never do that at home. It feels as though it is allowed when on holiday, but would feel very decadent at home – plus Yorkshire weather rarely allows for it!

Rather than us going back to work, it is Joshua who has daycare to get back for. He now has a three day-a -week commitment, which he loves, that means we cannot stay away forever, but our new reality of weekly routine is much more tolerable than it used to be. Looking in my diary for the week we return home, we have an appointment with Orthotics, for a helmet fitting I presume, an overdue visit to the dentist for me and two meetings, so that does not seem to be too strenuous a week to get back into the swing of things. In the past, we were often returning to one or other of us traveling with work, my husband overseas and me up and down the UK and we do not miss all the travelling and organising childcare for how our family could still function, with one of us on the road. We relied heavily on Yorkshire Grandma to pick up the slack after work and even overnight, if we both happened to be away at the same time. She was a God-send and allowed us to be able to perform our challenging jobs, knowing that Joshua was being well taken care of.

Our lives are very different now and much less stressful. I can understand when many parents of children with special needs choose to, or have to, give up their jobs in order to care for their children ; juggling school, illness and hospital appointments is challenging unless you have a very flexible employer, which fortunately I did have. I was able to use my overtime as lieu time to cover day time school meetings and appointments with social workers and at hospital, but not everyone has that luxury.

I now feel very blessed to be on holiday, but also to be retired when I get home. Joshua is still my primary focus, but I also have some time for me now too, which is great and long overdue.

Rest in Peace Archie

The sad news came yesterday that Archie Battersbee had died after his life support equipment was withdrawn, and my heart goes out to his grieving family and friends. I have followed this news story closely and have agonised for the family at every twist and turn. It became clear that the end was close and I hope now that his parents can finally find some peace and some comfort, knowing that they did everything that they could for their son. They fought tooth and nail at every level of the courts, to save their unconscious son, to give him more time to recover, but it was not to be. Medical opinion was stacked against their blind love for Archie and so in the end, they had to admit defeat and let him go.

I know that in the same situation, I would fight the same battles that his mother fought; I too would escalate my fight to every level of court possible and I would argue with her same passion. She has lost the most precious thing in her life and so her determination would know no bounds. I too have fought for Joshua, not in such a ‘life and death’ way but I have been driven to go to tribunal to change Joshua’s special school, to ensure he had the best continence products and our current challenge, to resume some kind of respite. None of these battles can compare with fighting the Doctors who wish to remove life support, I realise that, but I recognise her single minded passion, her refusal to back down and her need to speak out for her mute son.

I am however concerned for his parents now : how do they resume their lives without 12 year old Archie in their family? Having lived at hospital since April, how do they pick up the pieces of their broken lives and continue living? How do they un-see the horrors that they will have seen in hospital? I hope that they are simply relieved to be out of the media spotlight now and that they can grieve, and try to recover, in peace. They will be physically and emotionally exhausted, so will need time to heal and share stories about Archie in the comfort of their own family. I have only slept by Joshua’s bedside in hospital for a maximum of two weeks in his life, and I know how disorientating that is : you lose all sense of time and of the outside world, the ward becomes your life and the hospital routines guide each day. So to be in intensive care for so many months, must be so much worse and they will require a kind of decompression chamber, like divers need when they come up to the surface of the sea.

I suspect Hollie Dance will not be able to let this lie, once she has mourned her son. She has been his voice for so long so has been immersed in the media. I predict that she will re-appear as a human rights campaigner, powered by her grief and passion for her son. She will have pent up energy to put towards a new cause perhaps, no that her son no longer needs her to fight for him. It will take time for her to heal and be able to speak calmly about Archie, but she is a strong lady and she will recover. To lose your child, in any circumstances, must be heart-breaking and must be something that a parent never truly heals from ; but Archie’s avoidable death must be so much worse to tolerate as the ‘what ifs?’ and ‘if onlys’ will plague his parents for years to come.

Rest in Peace Archie xx

Grieve in peace Archie’s parents xx

Day 5 : Holiday Fun & Games

Yesterday started off perfectly : I woke early and so I left the house on my dog walk at 5.45, in time to see the sun rising and the sky was spectacular. The sun was peeping out as we set off along the beach and as it rose, it gave the sky a golden glow which I was able to capture in a photograph. We walked along the beach and then up a hill at the end of the beach to the summit. I sat at 6.45 at the place where my parents ashes are scattered, soaking in the view and bringing them up to date on recent events. It was so peaceful up there. Reluctantly we walked down the hill again, by which time the world was starting to wake up so the beach was busier with dog walkers. I took the dogs home and quickly changed into my swimming costume, and went back down to the beach for a dip in the sea that had been calling me all morning. It was refreshing and clear, I swam around for about ten minutes and then returned home to make breakfast.

I was in the kitchen when I heard my husband call out : Joshua had got out of bed but had fallen into the bedside table with seizures, sending the lamp flying across the room. He was twitching in the corner when I got there and the seizures had made him soil himself too. So it was a grim scene that greeted me and all the good effects of the walk, sunrise and swim, soon disappeared. We helped him up and I cleaned him up, and got him back into bed. I gave him his porridge and medication, hoping that would stops the seizures, but as they continued, it was clear that I needed to administer his rescue medication as they were not stopping on their own. I gave him Midazolam and read him his favourite story while we waited for it to take effect, and slowly the twitching stopped and he relaxed into his pillow.

We then knew that we were in for a quiet day in the house, while he recovered. So my husband went out to the shops to buy me some holiday postcards to write and I sat in the sunny garden writing them, as Joshua slept. Later my husband went back to the shops to buy some fresh bread so that we could have sandwiches for lunch. A wobbily Joshua joined us for a late lunch and then he dozed on the settee. It was 5pm before he perked up enough for us to go down to the beach with the dogs. We had a cup of tea and toasted teacake at the beach café before the swim as he was closing really, then Joshua lay on the rug on the sand while my husband and I swam in the warm sea, encouraging each dog to join us one at a time. It was great fun and we stayed there for about an hour in the end.

As we were walking home, we were debating whether to get a takeaway for tea and we stopped at a bar, overlooking the beach, for a drink in the sunshine. We must have been quite a sight as we walked through the bar to the terrace, with four wet and sandy dogs . It was quite a challenge to tie all of the dogs up securely and then to thread Joshua’s long legs into the picnic bench but he was happy to be there. We decided to eat there again, and as Joshua was still recovering I ordered him a small fish goujons. It was enormous fish and chips when it arrived and he was clearly hungry as he ate every scrap of it, feeding himself, allowing me to focus on my vegetable curry, which was delicious too.

So after a beautiful start to the day, it went seriously downhill from mid morning, but it definitely picked up again by the evening, so all was not lost. Epilepsy, we will not let you spoil our holiday!

Benefit of the Doubt

I caught the second half of an ITV documentary last night about the cost of ‘invisible disabilities’ and it was fascinating but depressing at the same time. Adults who suddenly found themselves disabled, due to accidents or illness primarily, were having to apply for disability benefits for the first time as they were no longer able to work. They were talking about how depressing the application form for Personal Independence Payments (PIP) is as it focuses on all areas of life asking how much help you need and highlights how much they are no longer able to do for themselves. These were people who had been able bodied but no longer were and they had the capacity to complete the paperwork themselves, they felt humiliated by the process. Once completed, the form is allocated points to asses the level of disability and one lady , having gone through the ‘humiliation’ of completing the form, was then mortified to learn that she was not disabled enough to qualify!

When Joshua was born, both my husband and I were working full time, and so we had no experience of the benefits system. It was the Health Visitor who told me to apply for Disability Living Allowance (DLA) for Joshua. I told her that we were financially secure and did not need the money but she insisted that it was Joshua’s right and that I should make the application. She warned me that the application form was grim to complete and advised me to sit, with a glass of wine, complete it thinking of his worst ever day, seal it up in an envelope and never think about it again. Minus the glass of wine, that it what I did and it went against the grain; the emphasis of the form is all about what my son could not do for himself and my outlook has always been to celebrate the positives and achievements, but there was no room for that outlook on this form. We were granted DLA immediately and it went into his savings account to buy big items, like off-road wheelchairs over the years.

When Joshua turned 16, his DLA stopped and instead we had to complete an even more daunting form to apply for PIP in its place. The Department of Work & Pensions (DWP) insisted on writing to Joshua in his own name and were keen to speak to him on the telephone too and were suspicious when I explained that he could not read or talk on the telephone, but that I was acting as his Deputy. They insisted on meeting us both at school one morning to prove that Joshua did not have the capacity, as I had described it and that assessment process took one minute in school reception. I resented the assumption that I was making this up just to squeeze money out of DWP, but I guess fraud must be widespread.

The PIP form divides up his life into a wide range of categories, such as feeding, sleeping, hygiene, road safety etc, asking in detail for how many hours a day Joshua needs help with each aspect of his life. Like DLA, this is a sobering form to complete as it is lengthy and at the end of it, you are left feeling that Joshua has no independent value at all, despite striving all of his life to give him as much of it as possible. Once again, Joshua was allocated points for each area where he needs assistance and one Council employee who saw his assessment told my husband that he had never seen anyone with as many points as Joshua had! Consequently we were granted PIP, both the independent living and the mobility component – we have a Motability car now using the mobility part of the benefit to fund an estate car with a big enough boot for his wheelchair.

I was advised at school that as Joshua would never have the capacity to work, he should also be in receipt of Employment Support Allowance (ESA) which required written statements from school and his GP to state that he did not have the capacity for employment. Joshua clearly qualified for this benefit too, which helpfully gives him his monthly prescriptions free.

Since I retired last Autumn, I was able to apply for Carers Allowance too, which gives me £70 each week because I care for Joshua more than 35 hours per week. During the pandemic I was caring for him 24/7, but now we have daycare three days a week, there are some breaks in my caring role, but even so, it way exceeds the minimum of 35 hours. As an hourly rate of pay, Carers Allowance is an insult but I choose to consider to be a contribution towards my caring role rather than a salary.

My outlook towards benefits has changed over the years : as I said, we are financially secure and so do not rely upon the benefits, but I now I agree that they are something that Joshua is entitled to and so I am willing to fight to ensure that he receives everything that he deserves. We tend to use his benefits to buy ‘luxuries’ for him that we might otherwise think twice about; we are on the look out for a bike adaptation that would enable him to safely and comfortably come cycling with us. With years of practice, I am now able to complete the renewal paperwork without emotion when it comes, but I could relate to the humiliated disabled people that I saw on last night’s documentary. Thankfully Joshua does not have capacity to understand what I have written about him, or else he might consider me to be disloyal and pessimistic about his abilities, but so long as he has the funds to buy him pub lunches and pay for the dodgems on his holidays, that is all he cares about really.

Birthday Treat

Those of you who are regular readers of this blog will know the fight that we have been having for respite for a year now : Joshua is funded to have one weekend in respite every month, but he has not been in receipt of that service since February 2020. Covid meant that his respite provision closed in lockdown, which was fine with us as we would not have sent him then anyway, the same as we shielded him from school. But it meant that in March 2020, we lost school, Yorkshire Grandma who was shielding and his respite service all at the same time and the onus was totally on us, his parents, for two full years, 24/7. But from this time last year, I asked them to book him in again, as I originally wanted him to resume familiar respite , before he accessed daycare. However, they have had a staffing crisis, having lost staff during the pandemic, they have not been able to recruit to social care and so have had insufficient resources so could not take Joshua for his overnight stays. I have been in regular contact with the manager throughout the last 2.5 years, and while very apologetic, her hands have been tied. I tried to make it easier for her to accommodate him by saying that we would be happy with a single night and that it could be any night of the week, it was not necessary for it to fall at a weekend, now that we are both retired.

I have now heard that she is planning on offering us one night, on Friday 30th September, so he would go after daycare and we would collect him some time on the Saturday. After all this time I was thrilled to be offered anything at all, but the date is just perfect : it is my birthday on 28th and my husband’s on 1st October, so we will be able to go out for a birthday meal while he is being taken care of. I emailed back immediately to accept and now I just hope that all of her plans now come to fruition.

As it will have been a full two and a half years since he last stayed with them, and they will have had staffing changes during that time, we are talking about him going for an afternoon familiarisation first of all, sometime in September, rather than returning straight back to an overnight stay. We are lucky that Joshua is pretty laid back and so I will expect him to embrace the change and enjoy the new experience.

You may also recall that, in frustration at the lack of respite from this provider, our Social Worker had encouraged us to look at another, in our home town, as an alternative. I wrote about our experience of two cancelled appointments and then the fact that it is a nursing home with the majority being permanent residents, that also offers some respite. I emailed them in the middle of July with concerns about their lack of transition visits and the fact that they would not assign particular staff to Joshua during his stays. I have heard nothing back since that email over three weeks ago now. Last time their lack of response was blamed on a Covid-19 outbreak, this time I have been told that they have been on holiday, but their lack of responsiveness adds to the doubts about their service that I already have. So I am delighted that it looks like his original respite might be coming good just in time.

My best friend has kindly been having Joshua overnight at her house once a month, while we have had no formal respite, and it is clear that he loves going to stay. So I told her that as our respite was coming back on stream hopefully, it meant that her and her family were ” off the hook” from next month. She replied that she liked being on the hook, so we shall see if his visits continue in the future, once we get to the Autumn. He is already booked in for a night later this month. My sister and brother in law also had him to stay last month, which went really well and Joshua certainly enjoyed his stay in their bungalow. So family and friends have done their best to plug our respite gap in the interim, meaning that I know we are a lot better off than some families. But the respite provision for children and adults locally is very scarce and so it is difficult to be granted, even though it can be a lifeline for exhausted, stressed families who simply need a short break. Our time without Joshua is not always used for treats such as nights or meals out, we can use the break to catch up on much-needed sleep or perhaps, as is happening next time, to have a meeting without worrying about getting back in time for when daycare closes.

So, fingers crossed that this date on 30th September can go ahead and happen and that it marks the resumption of a respite service that suited us all.