Winging It!

On the year anniversary of my wonderful Mum’s death, me, my sister and my Aunts – Mum’s three sisters – were all struggling to come to terms with her untimely and unexpected death. One of my Aunts kindly sent us a beautiful book, as she distracted herself in Waterstones on the anniversary, intriguingly called ‘The Boy, The Mole, The Fox and The Horse’ by Charlie Mackesy. I flicked through it when she sent it, I am ashamed to say but I only read it from cover to cover, yesterday, and I can heartily recommend it. The rough illustrations are beautiful, they are sketches, and it is about life and friendship, full of thoughtful sayings. It is simple, easy to read but very clever too and it can be read in one sitting.

For example, the boy in the book asks his new friend the horse:

“what is the bravest thing that you ever said?”

” ‘Help!’ said the horse”

As something ,or someone, who is regarded as being strong and capable, it is indeed difficult to lose face and to ask for help. It does not come naturally, so it is a very brave thing to do.

In fact the horse seems a very wise character to me as he also says:

” The truth is that everyone is winging it”

I know that this is true : you go through life thinking that everyone else has got their life under control and that they know what they are doing. As you get older, you realise that nobody has an easy life, we all have our own challenges and most people will struggle at some point in their lives. As a new parent, you look around and think that every other Mum is doing a better job than you are.; they seem to have breezed through breast feeding, their baby is always clean and smiling and they tell you how well their baby sleeps at night! The truth may well be slightly different, but that news dints your own self confidence and you can begin to feel inadequate.

It is the same at work, I was in awe of those clients who were so capable and competent at their jobs and initially that was intimidating. But then you begin to see the cracks appear and you realise that they are not as perfect as you first thought. My role was to provide market research for clients and so I was providing information that would help them in their jobs. I worked in research from graduating, for 31 years and so I learned that my clients did not in fact have all the answers, in fact, I held some of them, which was a powerful revelation that gave me confidence in my work. There were some clients who I got to know really well, who were almost friends, and they would share their insecurities and challenges with me, revealing that they were definitely ‘winging it’ in their professional guise, as was I. Particularly when I was suffering with my mental health, I always continued to work, but I would be full of self doubt and I was always waiting to be ‘found out’ as an imposter, who actually knew nothing.

Certainly as a parent of a son with additional needs, I have been winging it since he was first born and we received his diagnosis. The world of disability was a total new mystery to me and I have been navigating my way through it for 21 years now. That is why I try to support other newer Mums, as I would have loved someone to tell me some shortcuts or things to watch out for when Joshua was younger. The epilepsy nurse thought that I was strong and determined, she said ‘If Emma wants Joshua to go to that Special School, then that is where he will go!’ when we were going through a tribunal to swap schools. I did indeed have the bit between my teeth, but the truth was, I was absolutely winging it on that day at the tribunal, and every other day before and since.

So, have a good day and continue to wing it like the rest of us.

My Life in My hands

Yesterday we took our puppy, Yogi, to the beach for his first seaside jaunt. He was loving the wide open space and was not scared of the waves or cold sea. He did not swim but splodged about in the water, chasing the other dogs. I was happily vidoeing the group of happy dogs playing together in the water and chasing a ball on the sand. My husband threw the ball a bit deeper and nobody was willing to swim to fetch it back, though our Jack Russell, Kevin, was tempted. So we agreed that I would remove my shoes and socks, and would paddle in to fetch the ball. I gave my husband my mobile phone to put in his pocket as my shorts pockets were small and I did not want to risk dropping my phone into the sea during my paddle. By the time I had removed my footwear, the ball had come in on the waves and so Kevin picked it up. So I paddled in the sea anyway, walking alongside Yogi and splashing him.

I decided to film some more footage of the dogs on the beach so asked for my iphone back. My husband felt in his pocket but it was nowhere to be found, it must have fallen out! So we re-traced our steps searching on the sand. We scanned the beach, walking backwards and forwards, up and down the beach, but there was no sign of it. It was surprising as it is in a large, metallic robust case as it is dropped by either me or Joshua every day, it is red and should have been obvious to see and he should have felt it fall too. My husband took two dogs back to the car and I walked back along the beach with Yogi and Ruby, they were enjoying the extra steps. The sky went black during our 90 minutes of searching and then heavy rain came down as my husband tried a technological solution, trying to track my phone. But visually scanning and digital tracking did not reveal my lost phone, so we came home empty handed, very wet and disappointed.

I was really cross and upset too. It is all the precious photographs and videos that I was sad about, worrying that they were lost forever. But my husband reassured me that they will be stored safely in the cloud! But I have since realised that much of my life is held on that mobile phone. I have reached for it so many times already and it has been missing for less than 24 hours :

  • I used it to complete online banking, so I need to recall my passwords to be able to bank from my laptop
  • I use Whats App to communicate with friends and family on a regular basis. I realised last night while cooking tea, how often I tend to catch up with people while cooking.
  • Joshua’s disabled railcard and rail tickets to Scotland for next month are stored on that phone
  • I google anything that I am curious about, such as Diana Ross’s age, shops opening hours, for telephone numbers and as a reminder of actors’ names. I have already missed that infinite resource
  • It is easier to check my emails on my phone than it is on my laptop and I tend to make short replies on my mobile, it is only longer emails that I sit down to my laptop
  • I like to browse Facebook to see what my friends and family are up to and I do this quickly and easily on my phone. I too post on Facebook photographs that I think others will enjoy, such as the fabulous views on my early walks
  • I do not know any of my friends phone numbers as they are all stored in my mobile phone. Yogi’s breeder was expecting videos of his first beach walk but I have no other way of communicating with her. Last night I needed to warn RDA that Joshua was asleep and would not be horse riding, but I do not know their mobile number.
  • My phone entertains me : I often listen to the radio and podcasts on it both at home and in the car and will sometimes watch Prime or Netflix in the bath.
  • I use Strava to record my walks and that is stored on my mobile phone, so there will be a gap in my exercise record
  • I check the weather app to judge how to dress Joshua for daycare and to predict when I will have a dry window to cut the grass.
  • I use my phone apps for home shopping : Amazon, Etsy and Bloom n Wild are in regular use
  • I love my camera and take daily photographs of sunrises, beach views, Yogi growing up and of smiling Joshua, which I share on Facebook and WhatsApp. I adore the Timehop app that shows me every day what we were doing on the same date on previous years, so it reminds me of happy times with Mum, pets that are no longer with us or places that we have visited.

I had to go Cold Turkey yesterday without my phone from the the afternoon and it felt as though my right arm had been cut off, my phone is an integral part of my life. I know that I can live without an iphone, but I do not really want to. So today I will be heading back to the O2 store ,where last month I swapped my mobile number from the business contract to a personal phone contract. Now I will need to purchase a replacement mobile phone so that hopefully I can pick up where I left off and capture the sunrise that is happening right outside my window now.

My Heart Bleeds for Archie

I have been following the Archie Battersbee case, as anything in the news surrounding brain damage, always catches my eye. So now the parents case is going to appeal against the ruling that the Judge made in the Doctor’s favour to turn off Archie’s life support as they believe that it is likely that he is brain stem dead. Likely? Just likely, not definitely!

What agonies his parents have endured since an ‘incident’, which his Mum thinks was an online game that went wrong back in April when their 12 year old son was found unconscious in his bedroom. He has not re-gained consciousness since then, although his Mum is convinced that recently he has squeezed her hand. I simply cannot imagine being in that Mother’s shoes :

  • Her 12 year old son was a happy, fit young man at the start of his life and now he is lying in a hospital bed, with machines keeping him alive, until the medical profession decide to switch them off. her son was ‘normal’ and now, due to a lack of oxygen to his young brain presumably, he is permanently brain damaged.
  • She is losing control over making decisions for her son, the medical profession have overruled her gut feel to give her son more time to heal. She is convinced that her son is still ‘in there’ and just needs longer to recover. Whether she imagined him squeezing her hand or not, we will never know, but I am certain that I too , in that same situation, would be searching for hopeful signs, just the same as she is.
  • She has had to subject herself to the scrutiny of the press in order to get public support for Archie. I saw her interviewed on the BBC News and she was impressively calm and collected, given the subject matter they were discussing. She admitted that inside she was in emotional turmoil, but she had managed to find her professional self in order to speak to the media and get her opinions across.
  • The guilt that she will be suffering that Archie took this life changing action in her home, in his bedroom, will no doubt haunt her forever. Should she have been monitoring her 12 year old’s online activities more closely than she was? Undoubtedly, with the benefit of hindsight, yes she should.
  • She is separated from Archie’s father, although they jointly parent, so she seems to be voicing her appeal and media coverage on her own. I hope that she has plenty of support from friends and family.
  • Hope is a killer. Archie’s mother is hopeful that time will heal her son and that he will make some kind of recovery. She will be reading something positive into every flicker of his eyelids or a light squeeze of her hand. I can appreciate that she is driven on by hope, but should the appeal be unsuccessful, that hope will make it so difficult for her to recover and move on.

So Joshua too has suffered brain damage but his was caused by a stroke, through no fault of his own actions. Joshua’s brain damage was described by the medical profession as ‘devastating’ but he is certainly not brain dead. Despite what the doctors warned us, Joshua can walk, talk, hear and see and he has developed better than any of them predicted. At no point during his 11 days in Special Care did any doctor threaten or advise to turn his oxygen off. They were uncertain how this new baby would develop, but were certainly willing to give him as much time as he needed to develop and learn new skills. They talked about the Elasticity of young brains; That other parts of the brain learn to take on the functions that the damaged parts should control. Surely even at 12, Archie still has a young brain that could adapt if there is enough good tissue left? Undoubtedly he will be changed by his brain damage and will not be as able as he once was, but I am sure his parents would settle for that , to still have him in their lives. But as a young, ambitious keen boxer, would Archie want to exist in his new restricted body? Joshua has never known anything else than a body which is difficult to move around, which does not work on the right side like it should and that is plagued by epileptic seizures.

The real agony in all of this news story however is that Archie’s parents have lost control of their son’s future. The medical profession have the authority to make a life and death decision for their son. This decision will be based upon their medical opinion and scientific tests to assess his brain activity. There will be no room for emotion in that decision, yet his parents are only fueled by love and emotion for their son, so they are looking at the same case from totally different perspectives, so of course they will be pushing for a different outcome.

I wish Archie Battersbee and his parents well in their appeal and hope and pray that the glimmer of hope that they are seeing in their son, can be validated by the medical profession and that he can go on to live a happy and healthy life after this ordeal. Our situations are totally different, but Joshua is living proof that there can be life, love and laughter after devastating brain damage.

The Simple Life

I am so out of practice of not having Joshua by my side that it takes some adjustment, for a while I felt as though I was missing, or had lost, something. But it is also a very freeing feeling, to know that I only have to be responsible for myself. So I made my choices yesterday, knowing that I could suit myself :

I was awake early, so after I had pottered about, I took the dogs out on a walk for two hours, setting out at 5.50am, knowing that I did not need to worry about Joshua waking up. I jumped in the bath when I got back from my walk ; last time I was here having an early bath, Joshua walked in on me and tried to climb in, but I was undisturbed. After breakfast, I cut the grass out front while my husband strimmed in the back – we could both be in the garden, without running indoors checking on Joshua in bed every few minutes.

We were ready to go out on our walk together around midday; it was simple, we just put the dogs in the car and left the house. It is a much bigger performance normally, putting on splints and boots, then rounding Joshua up and making sure we have emergency medicine and nappies on hand. We had a beautiful walk along the river, for an hour, to a country pub where we stopped for lunch. The terrain was rough in parts and so it was with relief that we were not pushing a wheelchair with us, just having two dogs each. Lunch was delicious outside, there was no fuss feeding Joshua’s long legs into the picnic table, we just sat down and ordered our food. I could eat my prawn sandwiches, without needing to feed Joshua too, I just focused on my own lunch. Then we headed back along the river another hour, feeling full.

We must be a familiar family group in this part of the dales; we went to an ice cream parlour that we often frequent on the way home for pudding. The first thing that the owner said to us as we walked in as a pair was ‘what have you done with him??!’ She was delighted when we explained .

When we got back home, I fed the dogs then enjoyed a short siesta on the settee. I did not need to settle or worry about Joshua first, it was simple- I was tired, so I napped. We headed out again to the cinema at 6.30pm to see the new Elvis film. We could not remember the last time that we went to the cinema and when we did, my husband will have seen an action film and I will have seen something that Joshua might enjoy with him. So for us to both see the same film, one we both wanted to see and both enjoyed, was a real treat.

So life as a couple, for this weekend, has been much simpler than normal and that has felt like a real treat. But it is not normal and for all its complexities and compromises, I prefer our family life with Joshua. Sadly Joshua needed his emergency medication for seizures just before we set off for the cinema. I know that my friend has Midazolam experience, on other children, not just Joshua, so I was not concerned that she would know what to do. But my heart sank when I read the message. I was not sad for myself, who was too far away to help, but I was sad for Joshua; sad that he will have been having so much fun on his break, and in the heat, that seizures were probably inevitable. Sad that his fun last night was probably over, as he would sleep or become dazed and that he would be left feeling awful for 24 hours. So I texted lots of questions, including did she want us to return to collect him, but once reassured, we continued on our way to the cinema. I had to ignore my mobile in the theatre, which made me anxious in case of an emergency, but I did do and became distracted by the film.

When the film had finished, I turned back to my phone and read that he had slept and had woken pretty happy. It seemed as though he would sleep again last night, which was my concern once the seizures had stopped, that he might keep my friend awake all night, which is not what she signed up to. The news of the seizures and Midazolam was a little injection of reality back into our weekend away, a small reminder of our reality. We will head home this morning, collecting Joshua en route, so that they can have some weekend as a family without Joshua in it too. I am really grateful for this break and a taste of how simple life without Joshua might be , but I will be running back to our reality with open arms, ready for one of his special bear hugs.

Great Friend Expectations

I have written before about being fortunate enough to have had five best friends in my life so far and I am grateful to each of them for the important role that they have played at the various stages of my life. Let me tell you what I expect from a friend :

  • I expect loyalty, that they will be on my side, no matter what. I will do whatever I can to help my friends and I like to think that they will treat me the same way.
  • I would like patience and understanding, given that for chunks of my life I withdraw when my mental health is poor. I expect my best friends to wait for me to return and not to pressure me too much when I am low
  • I want them to enjoy my company, so that we can have fun together. But when we cannot be together – two of my best friends live in USA – I like to stay in touch by hand-written letter, WhatsApp and emails
  • I want openness and honesty. I want to share details of my life with them and I hope that they will want to do the same. If I have upset my friend, then I need to know what I have done as it will not have been deliberate, so I will need to have the opportunity to put it right
  • I prefer an equal friendship : sometimes I need to listen and other times, I need to do the talking.

But let me tell you also what I do not expect:

I do not expect my friends to welcome our son into their home and family, overnight, effectively putting their own lives on hold, when they work full-time, so the weekend is their only rest time. But that is what best friend 5 is doing this weekend. She saw that we were being left without respite and she stepped up to offer us an overnight stay, every month , until formal respite is sorted. That is going above and beyond what a friend does, even a best friend. I resisted for a while, feeling as though it was a huge imposition, but in the end she convinced me that the whole family, including the dog, enjoy Joshua’s company and so it was not so much of a chore as I thought. This weekend will be the third consecutive month that Joshua has slept in their family home and next month’s stay is already booked in too, allowing us to go to a concert without him in July.

So this weekend, my husband and I have come away for our own break; last night we had a delicious pub tea out, going at our own pace, not Joshua’s. We walked there and back and even took the dogs out for a bedtime walk while it was still light at 10pm – usually that is something that just one of us does, but it was a treat to go together. I have booked cinema tickets for tonight too, I cannot remember the last time that I went to the movies, so that is a real treat too as we both wanted to see the new Elvis film. And I hope that we will take a long country walk during the day today, unencumbered by a wheelchair. We will head home on Sunday morning, so that they still have some of their weekend to themselves and we will have some time with Joshua, before he heads back to daycare on Monday.

So thank you for being a great friend, we really appreciate what you are doing for us and I know that Joshua will be having fun with you all.

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

For so long, Joshua has been unable to express what he wants so it always gives me a thrill when he indicates what he wants, especially if I am able to deliver it and yesterday was a prime example of this:

He had a lazy morning, as he often needs to do after a daycare day, so he pottered around in his pyjamas while I did my household chores. He switched between ‘Music’ in the lounge, ‘Nemo’ in den and ‘Giant’ in his bedroom and I obliged with every request , even though he did not settle for long at any of them. So I thought he was still in den when I finished hoovering upstairs, but came down to find the room empty. He was nowhere to be found inside the house and then I tracked him down, he was sitting in the car on the drive. Now usually when you want him to get in the car, he sits in himself but he waits for me to swing his legs around and close the car door. But because he wanted to go out, he had got himself in fully and closed the door, so all that he needed was a seatbelt on.. oh, and to get dressed!

I brought his clothes downstairs to dress him and we were soon off out to a seaside town just 25 minutes away. We went in our 2 seater sports car, with the roof down, which he loves. It was a perfect driving day with bright blue skies and warm air blowing through our hair. So the drive there itself was a treat. We easily found a disabled parking bay in town and, although I had his wheelchair in the boot, I decided we should walk. We went first to the one shop that I needed to go to and then the rest of the trip was Joshua’s to control.

He stopped outside the chip shop where we had eaten lunch last time we were there, only now it was summer, they had orange plastic chairs outside, where he plonked himself down. I went inside to order and got him scampi and chips as he loves it and it is easier to eat as finger food then fish, as he can pop the whole thing in. The menu said that he would get 8 pieces of scampi, but when it arrived, he had nearer 20 and some bonus chips! He tucked in but the first scampi was too hot so he threw it on the ground, where a grateful seagull swooped in and picked it up. But none of the rest of them suffered that fate, he devoured the rest. When he had finished, we walked towards the seafront where I thought he would enjoy people-watching and seeing the sea. But he was much less passive than that…

We passed the amusements/fun fair on the prom and he stopped right beside the dodgems, pointing at the ride. There was nobody else there, as it was early afternoon on a weekday, but he still recognised what they were from his holidays and was adamant that he wanted to have a go. I saw that we needed to buy 7 tokens for a ride and it was a short walk to the kiosk to buy the tokens, so I persuaded him, very reluctantly, to move his planted feet towards the kiosk and away from the dodgems. Armed with £3.50 worth of tokens, he ran back to the ride and we began the tricky task of getting up the steep steps and then climbing into the tiny car, with his long legs. I managed to get him to step down into the car with his good leg, then I lifted his right leg in behind it. But he was spread out on the small seat, leaving no room for my bottom so I had to squeeze myself in and nudge him along. It must have looked funny to watch us get in. Eventually we were ready and off we went, round and round, with Joshua beaming with delight. As we were there alone, I started to do figures of 8 and he giggled at any swift changes of direction. he knew what he wanted to do and he loved it!

The fairground ride owner took our photograph and then he helped us out of the tiny car and then down the steep steps. It was a fabulous experience and I am so glad that I listened to Joshua, it was well worth all the awkward climbing in and out. Then we walked back to the car, he needed several sit downs en route, as it was hot and he was flagging by now. He indicated that he would like to climb into several closer cars but I persevered, and when he saw ours up ahead, he found the energy to rush towards it. In any other car, he would have slept on the drive home, but he loves the convertible so much that he saved his nap for when we got home.

We were only out for about three hours on total but it was what they call in Yorkshire ‘A Grand day out’ and he had done everything that he wanted to do – eat scampi and chips, then ride the dodgems! Today he should get to swim again with daycare and tonight he is having a sleepover with my friend and her family, so it will be an exciting few days.

A problem shared…

I meet with some parents from Joshua’s school every month these days, at a café close to Joshua’s daycare facility. So I drop him off by 10am, then I go onto the café. I was last there yesterday morning, as I had a few things to tell and ask the daycare staff. There were 5 Mums and one Dad there when I arrived, all set up with hot drinks and various brunch items. I said hello then fetched my mug of tea and mushrooms on toast and joined them.

It is an informal gathering of adults who all share one thing in common – we all have ,or had, a child at the same Special School and we became friendly at my coffee mornings and have remained friends. It is such a valuable group as we all share what is going on in our lives, not necessarily with our children. Today the issues that were covered, included :

  • How do I open a bank account for my child?
  • Do I need to get Power of Attorney for my child when they are older?
  • Does anyone have any tips for how to handle my son’s meltdowns when he gets violent towards me? Should I fight back?
  • What help can I get for my son’s mental health?
  • How are you going to cope during the long summer school holidays? using the school dinner vouchers during the holidays to help with rising food costs.
  • I have a PA (personal assistant but no funds yet) or I have the budget but cannot find a PA to suit my needs
  • Why does nobody return my calls? I am still waiting to hear back from Social Worker/School/Choices & Rights….

Nobody is the expert in our group, we just share each other’s opinions and experiences, and hopefully there is some valuable input, but if not, there are still sympathetic ears. We stay in the café, without getting moved on for a couple of hours so it is a great place to meet.

But yesterday, a crying lady with a baby at the adjacent table caught our attention and we were united in our concern for her : she was a single mother with three young children and a recovering drug addict. While she has a council house, so she is not homeless, she has no money until she receives her benefits in early July. She was crying as she did not know how to feed her children. She had been to a foodbank but had received a loaf of mouldy bread and was distraught . She had been to the authorities to ask for help but as she had a home and was no longer using drugs, they had told her that there was nothing they could do. She was genuine and in a desperate state, so we helped her out as best we could : some of us gave her some money, one Mum gave her the contact details of a charity that could help with clothes and food for her children and I gave her the homemade shortbread that I had made for the Mums. She gave me a hug in return. This level of poverty should not be allowed to happen in 2022 , there has to be some formal assistance that she can access, surely. But this morning, hopefully we made her feel a little better by listening to her story and offering her what help we could. It will not sustain her until the start of July, for sure, but maybe a couple of days at least. But we know that she is not an isolated case, there are families throughout the UK struggling in this way and we need to do whatever we can to help them.

We had been discussing our problems and worries together, but compared to this Mum who did not know where her next meal was going to come from, we had no real big problems that could not be overcome. I was proud of how our small group should concern and empathy and stepped in to help, where some people may not even have asked why she was crying. Lets do what we can to help everyone in food poverty…

Voting with His Feet

This week is Learning Disability Week, when work is being done – allegedly – to promote public awareness of what it is like to have a learning disability. I have yet to see any such promotional activity. However I can do my own small part : Joshua has a learning disability and as a result, yesterday afternoon he was subjected to an assessment of his mental capacity, when he really wanted to dose. We had just got back from a shopping trip and a lovely lunch out, so he had asked for ‘music’ and he was lying on the settee, with the windows open to cool him down as it was a hot day and his boots were off. He was just nodding off when a lady from Social Services arrived for her 2pm appointment. As a part of their application for his Deprivation of Liberty Safeguards (DoLS) they have to assess that any restrictions placed on Joshua are in his best interests and that he does not have mental capacity to make his own decisions.

So she arrived and I showed her into the lounge as she said she wanted to ask him some questions and I warned her that he would not be impressed to have his quiet time interrupted: She introduced herself to him, showed him her ID and asked him to repeat her name. He simply and clearly told her ‘Don’t Mess!’, which is one of his favourite phrases. I could not bear to watch the forced interaction, so I went to the kitchen to make her a cup of tea and when I brought the teapot into the lounge, he was still lying on the settee with his eyes closed. So we started to talk , she explained what she had to do and I poured the tea. Joshua stood up, grabbed me forcibly by the wrist and dragged me out of the lounge and away from her. he took me to his den, where I put Nemo on for him to watch as he settled down in peace again. We moved into the snug with our tea, to be closer to him but not as in his face. After about 20 minutes in den, he came into the snug again, grabbed my wrist again and asked for ‘music’ so he went back into the lounge, where he originally asked to be.

For DoLS she needs to assess if he has mental capacity to consent to:

  • being continuously supervised
  • Not being free to leave if he so chooses

I explained that I thought that in the first 5 minutes of her visit that he had clearly shown that he is able to make some choices in his life, and one was that he did not want to interact with her or even be in the same room as her! She agreed that she did not want to upset him by pursuing him and that she had enough for her forms for the court application. I insisted that all of the restrictions that are placed upon him are for his own personal safety and protection: The door on the landing with two handles so that he cannot access the stairs during the night, the locked front door and gates to prevent him from access the road outside and risking his life with traffic and the video baby monitor for instance, that allows us at night to see if he has got out of bed or is having seizures. All of these measures, may well deprive his liberty, but they do so in his own best interests.

Joshua, due to his learning disability, makes very few choices of his own : I dress him in what I want him to wear, I feed him what I want him to eat and I take him where I want him to go. We chose which school and which daycare facility he would attend, based on our knowledge of him and his likes and dislikes. One of the few ways in which Joshua can object to the choices that I make for him is to object; he can refuse to eat what I place in front of him or he can refuse to stay in a situation that he does not like, as happened yesterday. He could not make her go away but he could take himself away from her! I think he demonstrated perfectly his level of understanding and his free will.

Summer Solstice Adventure

I joined the local Mermaids wild swimming group in April this year and have already fallen in love with wild swimming in the sea and I have made friends with some lovely ladies who share my passion for an early swim. Today was a special event in the Mermaid calendar, the Solstice sunrise swim and I was very excited to be taking part this year, having seen the spectacular photographs from last year.

Some Mermaids, the night owls, went to the beach at 10pm last night and stayed on the beach, around campfires all night. Us early birds preferred to sleep in our beds for a few hours then aim to get to the beach before sunrise. My best friend joined us for the first time and so we sat up chatting until midnight – blowing all plans for an early night – and we set our alarms for 2.45 this morning, when it was already getting light. So we were on the beach, on my picnic rug, for 3.15, soaking up the atmosphere. Nearer 4am, the rest of my early bird group joined us and we were in the sea before 4.30. There must have been around 100 swimmers in total, all bobbing about in the North Sea, squealing as we got critical body parts wet. Some rush into the water and submerge themselves instantly, others pick their way slowly through the waves until they are ready to swim. Once I have got my bottom wet, I tend to swim away rather than prolonging the agony of wading out to sea.

It was a spectacular sight : the clear blue sky, the bright orange sun rising out of the sea and all the neon floats in the water. I stayed in for around 30 minutes, swimming towards the sun and feeling its warmth. It was beautiful and really rather moving. The coldest part is not in the sea, but when getting dressed after the swim so I tried to get dressed as quickly as I could. Then we sat together on rugs and blankets, enjoying the homemade lemon drizzle cake and ginger cake that I and another Mermaid had baked, with our flasks of hot drinks to warm up our insides. We chatted happily, and admired the view before packing up.

I was back home for 5.50 and now I am ready for a warm bath. I would not have missed that experience and adventure for the world, it was brilliant and I am already interested in their Winter Solstice swim. This is a new pastime that I have discovered and that I love and so I am not intending giving it up. I find that people who I tell about these early sea swims either think that I have gone totally mad or they are fiercely jealous that we live so close to the sea, so that this is an option. All I can say is that I love it and it is something fun, just for Me.

Provision Progress

We are still trying to solve the respite issue , in that our pre-Covid respite provider has not been able to recruit sufficient staff for them to be able to have Joshua back with them and so he has not been there for his weekends away, since February 2020. Our social worker suggested that we look for an alternative provider, just in case they never re-open. So yesterday, two ladies came from a local nursing home, that offers respite, to assess Joshua’s needs, to see if they could meet them. They were both lovely and we sat talking for 90 minutes, much to Joshua’s frustration. He came to say hello but breezed in and out thereafter, making demands for food or music to try to interrupt and distract us.

It became clear that Joshua was our specialist subject and that we had stories galore to illustrate every question they asked about his mobility, medication, general health, sleeping behaviour for instance, so they had plenty of background material to work with, as well as seeing, albeit briefly, the young man in question.

My reservation is that it is a nursing home, catering for adults from 18 to elderly and the majority are in wheelchairs. While it would be brilliant to have nursing staff around who are able to administer Midazolam, should his seizures run out of control, I really want him to have fun while away from us and I am not sure how much fun would be had there. It does not sound as though he would be making friends there particularly, although I am sure he would flirt with the staff. I am anxious that if the other residents, as 15 live there permanently and they have two respite beds, are more unwell than Joshua is, that he might be a risk to them when he is charging about, being boisterous.

So in order to do our own assessment, my husband and I are going to look around later today, while Joshua is in daycare. I feel that we will know instantly if it is right for him, I certainly have had a gut feel for these things in the past. In fact I had suggested that we visit them, before they spent time assessing Joshua, as they may have wasted their Sunday afternoon, but they insisted on working this way. So we will go this afternoon with an open mind and make a judgement, and see what we think.

I can still vividly recall the first time that I looked around Joshua’s final Children’s respite provision which was out of our LA area. A smiley senior opened the door to me and asked ‘Can you walk like a penguin?’ and I laughed out loud, all tension had gone, and I said that I thought that I could as I squeezed past the wet paint in the doorway. I made up my mind there and then that this was a fun place, so then I just needed to be convinced that it was also a safe place for him to stay. My priorities since he first started school have not altered, he needs to be ‘safe and happy’ and I always have that in mind when looking around any provision , be it daycare or respite. That day I called my social worker from their car park and told him that I would not be looking around any more places as I had found the perfect place for Joshua. He suggested that I kept my appointment to look around another provision, but I argued that I would be wasting everyone’s time as I had already found what I was looking for. He knew that I was stubborn and that he would be wasting his time trying to dissuade me, so instead he began to complete the necessary paperwork to get him started there. My gut feel was spot on and he had many happy years with them, until sadly he had to move onto adult provision when he turned 18. They kindly stretched that a little while we began transition to the new place that we found and then he finished his time there with a beautiful leaving party, which showed us just how loved there he was.

So it would be brilliant to find such a good fit right in our home town, but I am not sure that this provision will have that same instant appeal. But we will go later today with open minds and alert eyes and ears, and see if it is somewhere that we can envisage Joshua spending time without us. It feels like a big responsibility to get it right for him; but we have shown before that we can make the right choices and if we have made the wrong choices, as with his first special school, we have the courage and determination to make a change for him too.