Flexible Friday

I woke up yesterday, not really sure how the day was going to pan out. I had warned daycare that I was not going to wake Joshua, that he would be waking naturally, whatever time that might be. But I had been assured that his 1to1 would be in work anyway and so he could come to daycare when ever he was ready, or not at all. With this adaptable approach, I relaxed and went with the flow. I went for my normal morning walk with the dogs and on my return at 7.45, both boys were still fast asleep. Joshua woke just before 10am and so I took him his Weetabix in bed, determined to gauge whether he would feel well enough, after the previous day’s Midazolam, to get up or if he would snuggle back down once he had a full tummy, as was often the case. I was greeted in his bedroom by a happy Joshua and I knew immediately that he would be up for daycare.

He ate his breakfast quickly, then I dressed him. My husband drove him into daycare as I had a doctors appointment in the morning. I had a lovely time, I cycled to the surgery and when I was home again, I cut the grass. There was a Mermaid sea swim at 3pm and as my husband had offered to collect Joshua too, I packed up to go for a swim too. This was my fourth sea swim with the Mermaids and it was the warmest day and the calmest sea so far – I even abandoned my bobble hat! There must have been about ten of us , including two newbies, so I felt like an old hand with my three previous swims under my belt. We stayed in the water for around 15 minutes and as it was so calm, it was possible to actually swim. They are such a friendly group that we sat chatting on the sand, as we got dressed and then I handed round homemade chocolate brownies. It was a perfect way to spend my free time and the boys were just home again, when I got back.

Joshua had enjoyed daycare and had been no more sleepy than usual, so we had made the right decision, for everyone, to send him in. I love it when a spontaneous day works out well, as there is no pressure at all, we just go with the flow. There are days when there are appointments or plans to follow, but naturally I am much more in favour of waking up and seeing what the day brings. Once there is a deadline to be somewhere by a particular time, then that looms large and the countdown begins. In most cases, it is not possible to be too fluid over time – tables are booked for a particular time, Doctors appointments are fixed and ferries are booked for a specific crossing. So it is a real treat for me when some says come round 1ish or like daycare telling me to bring him just when he is ready, I find that flexibility, really liberating.

So from not knowing what the post-Midazolam day was going to bring, it turned out really well for both Joshua and me.

Devil on the Shoulder

Joshua was with my good friend yesterday and I had received photos to show me the fun that they were having together : Playing fetch with her dog, sitting in her garden, playing her son’s guitar and walking out in the park. A picture really does say a thousand words and I could relax, knowing that he was having fun and that he was in good hands. I had some chores to do in our home town and as it was sunny and we were Joshua-free, I decided to cycle into town and just because he could, my husband joined me. A sunny bike ride is a real luxury as we cannot both go out together when we have Joshua in tow. So even though my husband soon developed a flat tyre and had to try to fix a puncture, then bought a new inner tube, I was still smiling as I sat in the sunshine while I watched and waited for the repair, so that we could resume our bike ride. We collected Joshua’s prescription from the chemist, we collected my tupperware and funds raised from the hairdresser went to the Bank and then we cycled up to a retail park, where I bought some bargain walking shoes and we ordered a new bed for Joshua. So it was a very successful morning, we even had time to relax with a latte in the sunshine.

As soon as I got back, it was time to drive to my friend’s house and I texted her to let her know that I was on my way and she sent me a picture of Joshua having a nap on her settee. When I arrived at her house, she opened the front door for me then disappeared quickly inside, so I knew something was afoot : she had needed to give Joshua his emergency medication, to stop seizures, just 5 minutes before I had arrived. Joshua was lying on her settee twitching with his eyes rolling, which was not the welcome reception that I had hoped for. I replaced her and slid in behind him, allowing him to snuggle into my chest and we assumed a familiar pose. My friend was upset that his visit had ended in this way, as he had been having fun but I reassured her that she had been an Angel; that she had done the right thing, the Midazolam had done its job and stopped the seizures and Joshua had come to no harm, he was safely on her settee. I stayed in that position for about an hour, while he dozed and she brought me a pot of tea and we chatted. The threat of epileptic seizures is always there and they like to catch us out and remind us who is boss, it really is the devil on Joshua’s shoulder, but it could not take away from the fun that they had had together and the break that it had given to me too.

After about an hour, we had decided to move Joshua which was a two person job; he needed changing as he had soiled himself during the seizure and I needed her to help him to stand up by leaning against her, while I changed him. Then he sat down while I put his splints and boots back on, but he kept wanting to snuggle up on the settee rather than being bothered to get dressed and leave. We walked a wobbly Joshua to the car, which raised a smile as I had the roof down of the car, and he loves an open top drive on a sunny day. She bid him goodbye, still sad that their time together had ended badly, again I tried to reassure her that she had done everything right and he had chosen the best time really, as I was on my way already. He dozed for most of the drive home and I reversed into the yard so that he had the shortest walk possible into the house and I called for my husband to help us walk inside. I removed his boots and he curled up on our settee instead, where I could keep a close eye on him while I made a rhubarb crumble in the kitchen.

He was weary all evening, though he did wake up enough to eat all of his mash tea and then to warm and clean up in the bath. When Joshua has seizures and has Midazolam, his hands go clammy but cold, which is a really odd combination, but then, only a bath will warm him up. In his clean PJs , he climbed into bed ready for me to read him a story and then take his bedtime medication. He only got up once, to be put back into bed and he briefly came into my bed for a cuddle overnight, but he is back in his own bed now. I will allow him to wake naturally this morning and when this is, depends whether or not he will make it to daycare today. I am hoping that he wakes up his usual time, with his brain reset and happy to go to Play, but if he is not up to it, I am happy to take good care of him at home.

Joshua’s seizures have unfortunate timing, as often they can be brought on when happiness turns to a more manic giddiness, perhaps he was having too much fun – if there is such a thing? or perhaps it was just due, it is a couple of weeks since he needed emergency medication on the way home from the dales. Whatever the reason, epilepsy is always lurking for the most inconvenient moments and likes to keep us all on our toes.

Review of Care Review

I wrote yesterday that I would be attending Joshua’s Care Review meeting and I rushed back from dropping Joshua at daycare and got home with ten minutes to spare before it started. I have never used Teams before but these were not in person meetings yet. Since leaving work, I have not sat still at a desk for over two hours, so I am out of practice! It was hosted by Joshua’s Social Worker and as well as myself, the manager of his respite facility, a representative from daycare, his epilepsy nurse and a ‘Deprivation of Liberty (DOL) Officer attended the meeting. I was using my mobile phone rather than my laptop and I was impressed at how well it worked, with the faces of attendees along the bottom and the document we were reviewing above us on my screen.

I had set the scene by sending yesterday’s blog to my Social Worker when I wrote it, so that she could see my positive outlook on Joshua’s progress. I was delighted when she referenced it several times during the meeting, showing that she had clearly read it and understood my perspective too. I do not think in Joshua’s lifetime that I have attended a review meeting that was quite as positive. Previously there have been negatives to address, such as his kicking behaviour at school, the battle with the incontinence service, the need to change schools or Joshua’s seizures to name but a few that come to mind. So it was refreshing to be telling everyone how well his language is developing, how engaged he is in life, how his seizures are reasonably well controlled, how he is eating well and gaining some weight and how brilliantly he has settled in at Daycare. Consequently I have never enjoyed a Review meeting more, despite the fact that we had to follow the ‘domains’ in some new paperwork and that the conclusion was that Joshua’s basic care needs remain unchanged – he still needs help dressing, feeding, taking his medication and keeping safe.

The DOL officer was asking some bizarre questions about Joshua’s liberty: were his feet strapped down in his wheelchair, as well as having a lapstrap? Does he have any special safety precautions in the car other than a seatbelt? Are the doors locked at daycare or would he be free to leave? The implication is that now that he is an adult, he should have liberty, yet, for his own good, he is deprived of the normal freedoms that most 21 year olds have. She will prepare an application form and it will go to the Court of Protection, to argue that all of the deprivations in his life are in his ‘best interests’. This was one of the two times during the meeting that I got tearful – I was famous for my weeping at school as it is all so emotional. But I get upset at the suggestion that what we do for Joshua might not be in his best interests. I know that there are too many media cases when parents have shown themselves to be untrustworthy in the care of their children, but I know that I would die for my son, I will do anything to keep him happy and safe, even if, as in the case of during the pandemic, at personal detriment to myself.

The other time that I became tearful was when the representative from daycare was telling the meeting how delighted they were with him and how well he had settled in. I knew it for myself as I have seen it with my own eyes, but to hear somebody else say those words made me weep with pride for my adaptable, sociable son.

So a successful meeting with a few actions to be followed up. Joshua used to wear, and hate wearing, an epilepsy helmet at school and daycare, to protect his head when he fell with seizures. We only wore it at home when he looked like a seizure was brewing, as he hated it so much – he would pull at the chin strap asking you with his eyes to remove it. He has not worn his current one since 2020 and even back then it was tight and left a mark on his forehead where it rubbed. So we ought to get a replacement that fits, just in case he needs to wear it again in the future. It has been so long since we got his current one that I could not even recall which service supplied it or how to get hold of them. The epilepsy nurse confirmed that he needs a referral through the GP to access a new helmet fitting. He will not be impressed but it is in his best interests to have one that fits, even if it mainly remains in his wardrobe!

As I concluded yesterday, onward and upward Joshua!

Care Review

When you see somebody everyday, and during lockdown 24/7, you tend not to notice subtle changes in them. So it has been fascinating to read a document , created by Joshua’s Social Worker in summer 2019, so that it can be updated in a meeting that we are due to have this morning. It will be an online meeting, whereas the 2019 one was held in our home, and I am expecting both respite and daycare to be represented today as well as the epilepsy nurse. The meeting is due to take up to two hours and the purpose is to update the 2019 Care Review. I found it on my laptop last night and scanned it then, and have just read it more thoroughly now. There are significant changes that have taken place since 2019:

  • At that time Joshua attended school and had another year to run, but of course his school career ended abruptly in March 2020, and his weekend respite provision around the same time. Yorkshire Grandma attended the last Care Review, before taking Joshua out for the day, but she retired as his caregiver also in Spring 2020, due to Covid-19 when she moved away to live with her daughter. At the time of the Care Review we took all of this support rather for granted and we could have had no idea that the pandemic was going to remove it all so abruptly and leave us as his parents, as sole carers.
  • The 2019 Care Review talks about behaviour problems, in particular his kicking. Joshua no longer kicks doors in frustration, this was a habit that developed at school in the 6th Form and he was clearly communicating, with the benefit of hindsight, that he was not happy there and he was ready for a different form of input. I suspect Daycare would be surprised to hear that the happy, smiling young man that they have got to know since February 2022, used to have behaviours issues like that and that school had developed a Behaviour Management Plan for him.
  • Joshua has much more language now than he had back in 2019, which is delightful. He expresses ” Thank you” when he arrives at Daycare, showing how pleased he is to be there and he has called it “Play” on several occasions and even recognising a day at home with Mum constituted “No Play”. Daycare heard his voice from day 1 , whereas there were staff at school who did not realise that he could speak there. In 2019, he would point and gesture more than ask for things, whereas on a daily basis Joshua is asking for ” mash”, “Bix”, “Crisps” and “Giant” – meaning bed where he listens to The Smartest Giant in Town. Joshua is finding new words all the time at the moment which I find thrilling and I celebrate every new word that he adds to his vocabulary.
  • In 2019 we made much more use of his wheelchair than we do now, in fact his wheelchair lives at Daycare for them to use. There are three main reasons for that : firstly, we are more confident of how far Joshua will walk when out shopping for instance, and we do not ask him to walk further than he can manage without a break – inevitably in a café! Secondly, the wheelchair was a safety net for when he had seizures, to know we could get him back to the car. But now he is having clusters of seizures every week to ten days, so they are less likely to happen when out and about. Thirdly, Joshua behaves better when out in the community so we are more confident that he will oblige and go where we want him to go, without objecting and having a tantrum when he does not get his own way or trying to run off. We can now rationalise more with him and explain that we have one more shop to go to and then we will go to a café, and that appeases him as his understanding has improved.
  • In 2019, Joshua wore a helmet at school and respite to protect himself from head injuries with seizures. Now he never wears it – in fact it is too small! His seizures have changed nature and they are no longer tonic clonic violent seizures that send him crashing to the ground, which is where the risk came from. Now they are more likely to be a prolonger cluster of seizures that involve tensing and relaxing of muscles, like spasms, and he would tend to be seated or lying down.
  • Now in 2022 Joshua is much more able to express himself and to make his own wishes known and he more often dictates what he would like to do. He will now ask for “Car” or “Pod” when he wants to use them and this preference has developed over lockdown. Rather than objecting in 2019 when he did not want to do something, he is much more likely to tell us what he would like to do, which is a brilliant development and makes for a much happier Joshua, if he gets his way. It is not always possible straight away but I am now more able to negotiate with him – lets go to the Post Office first for example, then we can play in the Pod. This seems to appease him, most of the time but it is wonderful to see him exercise his own freewill and wherever possible I try to reward a request. of course this is now more possible because I am no longer working, so I am more likely to have the time to be able to allow him to get his own way.

Now I knew that Joshua had developed and improved over the last two years when I have been his main carer, I knew that Lockdown actually suited him, but it is only now that I compare how he is on a range of aspects, with how he was when he was 18 years old, that I can see how much he has improved in so many different ways. I knew that he was happier now than he has been for sometime, but now it is a revelation to me the reasons for that contentment and I am thrilled. Onward and upwards Joshua.

Walk a Mile in Their Shoes

There is no doubt that having a child with special needs in the family, places additional pressure on a marriage or partnership. I believe that one in 3 marriages end in divorce, but I am not sure what that same statistic is when the family unit contains a child with special needs, but it may well be higher. There were many single parents at Joshua’s special school and I have total admiration for them :They have to do all of the daily care routines themselves, they have no adult company when the children have gone to bed and they may have to face the difficult decisions about their child’s health ,or attend uncomfortable school meetings, on their own. They may have to organise challenging regular access for a reluctant child; for an autistic child that needs stability and consistency, now his, or her, parents are living apart and in unfamiliar homes which are not acceptable to the child. All of this adds an extra difficult dimension to what is already a difficult job, raising and caring a child with special needs.

I would not be telling the truth if I told you that having Joshua has not put our marriage under pressure over the years, but I am grateful that we are still a team after 26 years marriage. From the minute that he was born, Joshua has become the number one priority in our family and that often comes at the expense of either partner. Throughout his life, and still today at 21, Joshua rarely sleeps through the night and 9.5 times out of 10, in the wee small hours, he ends up in bed with me. He will need to be put back in bed, several times at bedtime, as he jumps out of bed and bangs the door on the landing up to ten times, before settling down to sleep, so if we are watching a film together, it has to be paused endlessly while one of us encourages him back to bed and urges him to go to sleep. When he was younger, I used to snuggle him back to sleep and would inevitably fall asleep next to him, missing the whole evening. Joshua requires full personal care and so that means he takes precedence in the morning and evening when he needs washing, dressing, changing and feeding.

It is normal for a Dad to feel ‘left out’ when a new baby comes home, as Mum is devoted to the care of her new baby. But it is the natural order of things that this baby becomes a toddler and then a child, then a teenager then flees the nest, gaining more and more independence as they grow older. As a teenager, I have heard the complaint that they treat home like a hotel and are rarely there, other to eat and sleep. So the parents have the opportunity to get used to the feeling of them having left home, before it actually happens. If the offspring go to university, again this is a trial run as the college holidays are so long, that students tend to be back home for half of the year anyway. But when your child has special needs, they do not necessarily gain that independence from their parents : Joshua requires virtually the same level of care now at 21, that he did when he was newborn, only now he sleeps less and his is much bigger and heavier!

Respite from caring responsibilities are a necessary way to find time for yourself and for you as a couple too. When Joshua was at school, that gave a 6 hour window when he was in somebody else’s care but both me and my husband were working then, so did not really get the benefit. But now that we have stopped work, daycare gives us some much needed time for ourselves and for each other. Again we have a 6 hour window, 2 hours of which are taken up with driving to and from daycare, but the remaining four hours seem like a real luxury after the 24/7 caring that I was doing for the last two years of the pandemic. We can treat ourselves to lunch out together and we have both seen friends separately, but it also gives us time to get mundane jobs done, which are so much more easily completed without having Joshua in tow. So tomorrow for instance we plan to clear out and demolish an old farm building together and have a bonfire, while Joshua is being cared for elsewhere!

We have a meeting on Wednesday, Joshua’s Care Review, with the social worker and with the various professionals who are involved in his life. This will be the first one of these that we have had with him as an adult, as previously Annual Reviews took place at school and then none happened during the 2 years of the pandemic. Even now, tomorrow’s meeting will be held on Teams , rather than face to face, so that will be interesting. Prior to the pandemic, Joshua attended respite one weekend in every four and we would all enjoy this prolonged period of freedom and independence from each other. Latterly we were even brave enough to go for weekends away together as a couple, both locally and then even abroad. But Joshua’s last respite weekend was in February 2020 and none are imminent, as far as I know, as there is still a shortage of social care staff. These weekends were a great boon to allowing us to just be a ‘normal’ couple again and to refresh ourselves, ready for getting Joshua home again on Monday. I hope that tomorrow’s meeting might give us hope that that facility will soon become available to us again.

So spare a thought for the struggling single parents and the struggling couples who are devoting their lives to the care of their children with special needs. Until you have walked a mile in their shoes, it is safe to say that you are unlikely to know, or appreciate, what they are going through on a daily basis.

The Tractor Factor

One of our friends, and her farming family, organised a Tractor Run as a fundraiser for Marie Curie yesterday. She had asked me a long time ago if I would bake for the occasion and I had offered to add shortbread, cheese straws, coffee cake and chocolate brownies to her buffet . If I am honest, I had no real interest in the vintage tractors that were driving around the local area, but I was happy to bake for the good cause and to support our friend’s initiative. So I have been baking for he last few evenings and mornings and storing the baking on the dining room table. We had a small crisis yesterday morning when the dogs broke into the dining room , while I was relaxing in the bath, and they knocked my tub of cheese straws to the floor and they had eaten half of them before I caught them in the act! I had an hour before we were due to set off so I dashed off to buy more eggs and I created a new batch of welly boot shaped cheese straws, while my husband gave Joshua his breakfast. They cooked and cooled just in time but we set off, leaving the kitchen looking like a bomb had gone off in there.

When we arrived, we added my home produce to the heaving table of food and it was quite a spread laid on for the tractor drivers, of which there were 37, and viewing visitors like ourselves. The tractors were already on their drive around when we arrived, so we could relax in the barn where it was all being held and enjoyed a very welcome cup of tea. The local fire engine arrived, which was a big hit with the children present, we watched as they climbed abroad the fire engine and sounded the siren. Joshua dragged me over to the smaller fire truck as he also wanted to join in. My husband helped him climb the steps and Joshua beamed as he sat inside, the same as the children he had watched. The firemen were so kind and helpful to him, it was a real highlight of the day. They showed us the equipment on board so it was a fun and educational experience too. Reluctantly Joshua got out to allow some more children in, but he dragged me over again later for a second go, he had enjoyed it that much.

On the horizon we could see the tractor parade on their way back to the farm, so we prepared the buffet, removing all the tops of containers and it looked like a real feast. I went outside to watch the tractors arrive and having said I was not that interested in farm machinery, I found myself excited to see the majestic sight and I joined in with the cheers as they approached. I stood on a hill to get a better view and my husband held onto Joshua on the side of the driveway, and he too enjoyed the loud spectacle in front of him. Once they were all parked up in the farmyard, it was quite a sight as farmers of all ages came into the barn to eat. They were hungry after their two hour parade so the drivers had first go at the buffet and then us spectators tucked in. There was plenty of buffet food then homemade cake to go around. Joshua only really ate crisps and cake, but he was very happy amongst the crowd, while my husband and I returned to the buffet time and time again. I got great satisfaction too from seeing my baking being enjoyed, as children tucked into my shortbread tractors and my coffee cake was devoured appreciatively. After the food, there was also a raffle but none of our tickets won any of the prizes.

It was a well organised, fun event – much more fun for me and Joshua than I expected, as I knew my husband was fascinated by vintage tractors . Joshua’s thumbs ups to the farmers and firemen were reciprocated, even if some of the children were confused by him, but it was nonetheless a great opportunity for him to wander around and mingle. I understand that it raised around £1500 for the Marie Curie charity too so it was a huge success all round.

One of the Lads

Joshua was very happy yesterday as he was spending the day with some of his favourite people. Again similar to a daycare day, I only had to tell him that he was going to his Aunty’s house and Joshua leapt out of bed and was happy to get dressed. He kept repeating my sister and brother in laws names. We were going over for my sister’s birthday lunch, which this year was in a pub near them. Originally we were meeting first at her house, but then I considered that Joshua would be reluctant to leave after just ten minutes there and so we changed the plan to meet them at the pub, along with my niece and her fiancé. We had a smooth journey and arrived right on time, just as the rest of the party were getting out of the car.

Joshua spotted them all and was so excited and from inside our car he began shouting his greeting of ” Cheese…Don’t mess!” while giving them all a thumbs up. Joshua was giddy with excitement and when he got out of the car, he ran to my niece’s fiancé and gave him a big bear hug – he had not seen him since his birthday at the start of March. We all laughed as he gave the birthday girl a hug and his cousin got a thumbs up. We were a happy party of 7 who went into the pub restaurant and sat down at our table. Joshua continued to beam at his cousin’s fiancé and give him thumbs ups and flash his tummy at him. He is very tolerant of Joshua’s attention and responds well, as a result Joshua stuck to him like glue for most of the day, choosing to sit next to him on the settee when we got back to my sister’s bungalow, continuing to sit close to him when we sat outside on the patio in the sunshine, while we had tea and birthday cake. But the funniest choice that he made was that his ‘mate’ sat in a large armchair back in the lounge as it got cooler, and Joshua wedged in next to him, squeezed into the same chair and the pair stayed like that until we left.

Joshua clearly approves of his cousin’s choice of life partner and it is heartwarming to see two young men form a bond like we witnessed yesterday. Not all young men would know how to take Joshua’s affection, but he responds perfectly : joking with Joshua, talking to him and never drawing away from his attention and always responding to his flashes or thumbs ups. He has a gentle warmth that Joshua really responds to. We used to joke that they were ‘best mates’ but I think Joshua really feels that way, based on what we saw yesterday and he will love being his groomsman next year when they get married, when he will be ‘one of the lads’. Joshua does not really have any friends as such; there are young people that he mixes with at daycare but there was nobody special at school as he related more to the staff than his peers. I have always said that our dogs are Joshua’s best friends, but now he does have a new best friend . Although they do not see each other very often, they seem to pick up where they left off and it is not a one -sided friendship. I will enjoy watching this friendship develop into the future; he did not realise that when he asked my niece to marry him, that he would also gain a new admirer in Joshua but I love to see the two of them interact together.

All in all, it was a very happy family day!

Reasons to Celebrate

The 30th of April is significant this year for three key reasons :

  • It marks the last day of my April fundraiser challenge – ‘Walk 60 Miles with your Dog for Cancer Research’. Me and my dogs have walked 154 miles in April, so we thrashed even my unspoken personal target of 120 miles, so I am really proud of us. We have averaged more than 5 miles everyday and we have not missed a single day’s walking this month. But even better than our walking, we have raised £1000 for Cancer Research with everyone’s kind donations, which is incredible, so thank you for your generosity. My fund raising target was £150 initially, so we have thrashed that target too and I am delighted. I will continue my early walks as I am loving the sunrises and nature that I have witnessed, I can feel myself getting fitter and I find it a great way to start my day.
  • 30th April has always been a significant date in our family as it is my sister’s birthday today and we are meeting up for a birthday lunch later today and I cannot wait to see her and give her a big hug. As we were growing up, we were allowed to choose our own birthday tea and Mum would cook it for us. I cannot recall what her chosen main course would be, but her birthday pudding would always be Baked Alaska. Even as adults, we always tried to get together on family birthdays and either Mum or I would make her a birthday cake. I made her a Victoria sponge last night, as she requested and it just needs decorating and filling this morning before we set off. Joshua loves a family party, so he will be very happy when I tell him where he is going later, he adores his Aunt, Uncle, cousin and cousin’s fiancé, so he will be in heaven.
  • We have completed one third of 2022 already! Where did those four months just go? That is incredible to me that they year is rushing away with us and that we are hurtling towards summer and even lighter nights. Joshua began daycare back in mid -February, but with a break for a holiday and for Covid-19, he has attended just 12 times so far, but he behaves like he has gone there all of his life. He is so happy and relaxed when he arrives, giving the staff a big smile, or even hugs, as he walks through the door in the morning. This week was his first week of three days in daycare and he has loved it, even though it has worn him out.
  • So we have much to be grateful for this morning on the last day of April in 2022 and as we embark on a new month tomorrow, we will start to feel as though we are really finally leaving winter behind us. Onwards and upwards 2022 !

Sleeping Beauty

Everyday that Joshua has gone to daycare, he has needed a nap when he has got home. He starts asking for ‘Giant’ as soon as we get to our lane – he listens to the Julia Donaldson story ‘The Smartest Giant in Town’ as he goes to sleep every night , so I request for Giant means bed really. When I brought him home on Wednesday however, he was a new level of tiredness. His eyes were closing on the half hour journey home and so when we got home I suggested the settee downstairs, rather than climbing the stairs for Giant. But he was insistent that he wanted his bed so he wearily climbed the stairs and sat in his bed while I removed his big boots. I tucked him in and turned on ‘Giant’ and left him to it. Normally he will doze for 30-60 minutes, then come downstairs hungry, looking for his tea but that night he was super-tired.

He got into bed around 4.15pm, when he got home and he did not wake up again until 8pm! So I warmed his pie and mash up that he was due to eat two hours earlier and he devoured it in record speed. But then he asked for ‘Giant’ again so I helped him back upstairs and back under the duvet. He fell asleep again immediately and did not emerge again until 8.30am the following day which is unheard of. I checked in his daycare diary and he had not engaged in anything too energetic – he had made a super hero mask in the morning and then went out in the wheelchair around the community, so nothing untoward there.

There were several implications of this Big Sleep :

  • I had a lovely quiet evening to myself – my husband was out for a meal with an ex-colleague so I watched what I wanted on the TV and went to bed when I felt tired too, so it was an unusually relaxing evening and then of course, I slept through until my 5am wake up time, which is very rare too, so we were both well rested
  • But my evening was not totally relaxing as I was slightly unnerved by this Big Sleep : I had to keep checking on him to ensure that he was still breathing! Your imagination plays cruel tricks on you and even though I could see him on the baby monitor, I needed to go into his room to be reassured by his snoring.
  • I was half expecting him to wake at midnight, after 8 hours sleep, and to be raring to go. That is partly why I went to bed early too, so that I could grab a few winks just in case I was doing the night shift. I know what sleep deprivation does to a body, after years of broken sleep and those terrible months when he would stay up for 48 hours after seizures, just moving around the house like a Zombie, so I was sensible.
  • I was reassured that we have done the right thing by building in a rest day in between his daycare days, as he is going there on Mondays, Wednesdays and Fridays for now. He will need that quieter rest day at home in between, so that he can have a lie in if necessary and go at a slower pace. I emailed his Daycare provision to ask if she knew why he was so exhausted and to warn them that we would be sticking to 3 days a week for the time-being, even though we are funded for 4 days a week.

Joshua emerged from his Big Sleep at 8.30 yesterday morning, as if nothing unusual had happened. he heard me in my bath and came into the bathroom, requesting that he to fancied a morning bath. He must have felt better for his Big Sleep and it may also have fended off some seizures that could have attacked if he had stayed awake, but been so in need of rest. Last night he was back to normal with his sleep pattern : took several attempts of putting him back in bed with Giant before he nodded off and he was out of his bed and into mine around 2am and then back into his own at 4.50. It was as if his Big Sleep was just a distant dream….

Don’t save Anything for a Special Occasion, Being Alive is a Special Occasion

I was listening to Radio 2 Pause for Thought on our way to daycare yesterday morning : The speaker told a tale of an elderly lady who in her 80s decided to wear all of her special dresses everyday as she was not sure what she was saving them for. One day she decided that if she did not wear them on ordinary days, she might run out of time and her daughter would simply be giving them to a charity shop when she died. It did make me pause for thought and I could relate to her outlook. I used to do something similar with my wardrobe : I used to downgrade my ‘going out ‘ clothes to work-wear, as we did not go out much and otherwise, they were just languishing in the wardrobe and they used to give me a lot of pleasure wearing nice dresses to work. I often use my clothes to brighten my mood : often when I was feeling my lowest, I would wear bright colours to try to lift my own spirits and of those around me, hoping that some of the brightness would rub off on my mood.

Then I reflected on how Joshua’s outlook is very much living for the moment. He is not waiting for a special day, everyday for Joshua is new and exciting and he embraces it. We could all learn more about how to be from his outlook. As far as I can tell, he does not have any regrets or waste any time thinking about the past – once it has gone for Joshua, it has gone. He loved his Granny dearly, that was clear from the way he greeted her so enthusiastically, but he has not wasted any time or energy grieving her loss. He loved her while she was in his life but he shows no sign of pining for her, even when we were emptying her house , he was not traumatised by her being missing, like we feared. On the last day that we were there, he sat on the carpet, in the empty lounge happily enjoying fish and chips for tea, ignoring the fact that tears were streaming down my face. It does not mean that he did not love her, he just deals in the here and now and she had gone, so he moved on.

He does not appear to worry about the future either, he is just very present. I cannot tell him that it is his Aunt’s birthday at the weekend and we are going to see them for a birthday lunch, as he would expect to do that now, today at the very least, so I will not distract him with that news until Saturday morning, when he will be delighted. When Joshua started daycare, I was anxious about how on earth he was going to get out of bed at 8.30 am after two years of lying in. But now his understanding has improved, I simply explain what he is getting up for and he leaps out of bed if it is something that he wants to do. Yesterday he had a restless night and he was snoring at 8.15 when I went into his bedroom and opened his curtains, to enable him to come round slowly. After his Weetabix breakfast, I told him that he was going to ‘Play’ and he throw the duvet back and swung his legs out of bed, raring to go. Joshua does not hold back is emotions, if he is excited or happy, his body language and expression, make it very clear.

So lets not wait for the day we retire or that special holiday before we have fun, let’s try to make the most of everyday and squeeze as much joy into it as we can, that is how Joshua behaves and it certainly seems to make him happy.