Hocus Pocus Focus

Today is Halloween, which  the shops are full of as the precursor to Christmas, but it is not a festival that has ever interested Joshua. He is not into fancy dress at all, as I choose his clothes and dress him each day, so I doubt that he would recognise that he was wearing anything different particularly. I dressed him in his bright orange pumpkin t-shirt last week for the school disco but I am not sure that he realised. We have bought and hollowed out a pumpkin most years of his life and place a candle inside to make a spooky mask, but it is not an activity that he has ever joined in with, it has more been for us than Joshua. He would not appreciate a horror movie or being frightened, so there really is nothing about Halloween that appeals to Joshua. But unlike Christmas or Easter, I am not sad that he is missing out on the fun of the celebration or the understanding of why it is significant.

It is said that Halloween  has become too commercialised  these days, and certainly the shops are embracing it as a money-making venture with their spooky merchandise but I appreciate the special window dressing that goes on. I grew up in Scotland and all those years ago, Halloween was good fun. I do not really remember fancy dress, but I do know that we would play ‘trick or treat’ on our neighbour: she would always choose a treat, we would sing a song for her, and she would give us lots of sweets as a reward. We never went from door to door of strangers, only to our neighbour who we knew well and as an elderly lady on her own, she appreciated the Autumn visit from a gaggle of children.

In 1978, we moved to England where the approach to Halloween was somewhat different. On our first October in the new house, Mum was caught out as crowds of children would arrive at the door, in scary costumes, expecting to be given handfuls of sweets. They were rather taken aback when they realised that Mum expected them to perform for their treats ,as she asked them ‘What are you going to do then?’. But she got the hang of the English traditions and when we were tidying out her food cupboards in the kitchen this summer, I found a big bag of Halloween sweets tucked in the back, ready for the visitors who came, so she was, as ever, all organised – though they were probably leftover from the year before!

Happy Halloween!…. we are now on the Christmas Countdown.

Pier Peers

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

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

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

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

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

Shooting hoops

Holiday Happenings

We had a full day travelling yesterday and Joshua dozed most of the journey. If he was not asleep, he was eating fruit or banging the headrest of my seat in front of him, to remind me that he was there. We have always been lucky with how well he travels on long drives, as he often seems content to watch the world go by and listen to music for the most part. He used to always travel in the front passenger seat until he developed two bad behaviours that got him relegated to the back : he tried the door handle while we were driving on a motorway and frightened us, so he now needs the security of child locks in the back. When he developed his door kicking game, he began to kick the front panel of the car if we stopped at traffic lights, queues or inadvertently passed by a Donalds! So now he travels in the back seat and I have been promoted to up front!

There was no need to kick yesterday as we stopped at two different Donalds en route. Both occasions were greeted with the same excitement, shouting out ‘thank you!’ and ‘Donalds’, but in both he only drank his orange juice hardly touched his food. If he is struggling with a sore throat, then scratchy fries and crispy chicken might not be the best food choices.

But the happiest that Joshua was all day was when we finally boarded the ferry and he knew where he was and what lay ahead. We sat in the lounge on a settee that looked out at the sea, but as it was dark, all he could see was his own reflection. Joshua is so vain that he was in heaven : he waved, revealed his bare tummy, stroked his hair back and generally admired himself for most of the short crossing. He tried to engage other passengers in his waving game but only a few responded, but he seemed undeterred as he was in such a good mood.  He devoured a bag of Wotsits and more juice, as he admired himself in action and he was somewhat disappointed when we had to make our way back to the car deck, as he waved goodbye to himself.

We have a routine when we arrive for our winter stays at this holiday house, we turn the heaters on to warm it through and then my husband walks to the supermarket to buy provisions, while I make the beds up , with Joshua’s help. He insisted on sitting on each bed that I wanted to make, but we got there in the end. Joshua curled up in what he knows to be his bed once it was made and did not want to come downstairs again. So I changed him into his Pjs and gave him his bedtime medication and let him go to sleep. Hopefully a good night’s sleep will set him up to begin his holiday adventure this morning.

Play Away

So all being well, we will head off on our holiday later this morning, just a day later than planned. I sulked a little yesterday, feeling that we had lost a day’s holiday but I know it was the right thing to do for Joshua, but he was so improved that I am confident that we will get off today. So I have been speculating about what our holidays mean to me as I look forward to them so much:

They involve family time away with my son and husband, when none of us are distracted by work, school or appointments. We have no schedule, we wake up each day wondering what the day might bring and there is no real plan. We have a mental list each of the places we would like to go – all our favourite haunts – and the activities that we would like to fit in, but there is no schedule as such. We don’t have to be up and out at a certain time, so mornings can be a more leisurely affair. That being said I am looking forward to my morning beach walks with the dogs before the boys awake, when I can stride out along the prom, cliff path or sands and breathe in the sea air and watch the sunrise and the day leap into life.

We stay in the same holiday home three times a year, so it offers us a real home from home comfort. Joshua knows which is his bedroom and we know where everything is in the town that we might need while we are away. This familiarity adds to the relaxation, as there is no period of acclimatisation that you get in a new destination, once we have completed the long drive – which never seems as far on the way down as it does when we are driving home! – and made our beds up and filled the fridge with food, we are ready to go. I love to walk down the town to see what has changed since our last visit, to see if any businesses have disappeared and to monitor the progress on the building work that was underway in August, as it marks the passage of time. I am hoping that Joshua will enjoy the delights on the pier that he loved so much in the summer; I suspect the dodgems will be closed for winter as they are at the far end of the pier but he will still be able to shoot some hoops in the amusements if he chooses to.

I know how lucky I am to have had access to this house all of my life and how fortunate we are to get away from it all, so frequently. Not all of Joshua’s peers are as fortunate and many from school will be lucky to get away once a year, if at all. For some, the trauma of the journey and the new environment would be too stressful, so that it is simpler to stay home at weekends and during the school holidays. So I do not take from granted my last days of annual leave this week and I plan to have fun together once we get away.

Crystal Ball

Joshua slept until 11 am yesterday, which is rare but I put it down to exhaustion after a busy half term at school. But when he did not finish his Weetabix and he curled back up in bed,going back to sleep, I knew he was unwell. So I gave him some magic Calpol and waited for the miraculous improvement. But it did not come, he went back to sleep and he was snoring away every time I checked on him, so I left him to heal in his sleep. But by 4pm, I was concerned and thought he had been in bed long enough. I took him his medication in some nutritious rice pudding and went to wake him. His complexion – he has transparent skin that loses all its colour when he is sick – was grey and his Pyjamas were soaked in sweat, he was unwell. He managed to eat the rice pudding and had another dose of Calpol but he was not interested in coming downstairs once I had changed his PJs, it seemed he had more sleep in him.

So instead after half an hour, I ran him a bath and he was willing to try that as he does love his baths. He loves the bubbles and warm water, he kept turning the hot tap on wanting more hot water. After that he had more colour in his cheeks and he looked more human, but still had no energy. He managed to eat some tea but he was back in bed and slept all night, from 8pm so of the 24 hours yesterday, he cannot have been awake for more than 4 of them.

So this morning’s decision is, is he well enough to travel on holiday as planned today  or does he need another day in bed to recover from this germ that knocked him off his feet? If we do go, it will be 6 hours in the car before we take a ferry then arrive at our destination. It is yet another situation this week when I have been wishing for a crystal ball : I want to see into the future to see how the journey goes and how unwell he will be today, before making the decision to delay. I do not want to make him feel worse by rushing him into a long car journey. But once again, no crystal balls are on hand and Joshua will not even be able to explain how ghastly he feels when he finally awakes. It was obvious yesterday, so I am hoping that it will be equally evident this morning and that we then go on to make the right decision for us all.

 

Joshua made it to school yesterday, even though he seems to have slept through most of the Halloween festivities, but he managed to smile for his annual school photograph and we are delighted with the result . I have no expectations that they will manage to take a beautiful portrait as it is often hard to get Joshua to look at a camera, let alone capture a smile, so they did a great job this year. Most years he has been unwell of photograph day I recall, starting right back in primary school : he had a bad cold and I had kept him at home I recall. They had called me up and asked me to bring him in, at least in his school sweatshirt, which I did and the end result was much better than I expected, you cannot tell that his nose was running and he had a high temperature as he looks like the picture of health:

First School Photo

Last year, he had seizures on the way into school and so he was really washed out by the time he was called for, and it shows in the photo too. After they had taken it, he dozed in his wheelchair in the coffee morning I recall so that I could keep an eye on him and then I brought him home with me as he was so lifeless. we bought the photograph anyway, even though it is not flattering, as my husband argued ‘who will buy it if we don’t?’.

There were several complaints about the school photographs on parent social media from disappointed parents, which surprised me. It is not easy to capture our children on film at the best of times, let alone when there is a time pressure to complete the whole school in a day. There can be no real time for posing and re-taking but thankfully we now have digital cameras and so I guess they can keep going until they can see that they have a decent picture. That clever technology also means that we are sent the proof to approve and order on the same day as they are taken. They managed to capture Joshua looking at the camera and laughing too, so that is an achievement in my book as I know how hard it can be.

Last School PhotoThese school photographs help to mark the passage of time, to track Joshua from chubby four year old to a tall,slim young man, all in the blink of an eye, and they are treasured records to have, regardless of whether his hair was brushed or his clothes were clean, this is real life, not a model’s photo shoot. Two families I know received devastating news yesterday about their offspring and they may be looking back over school photographs for some comfort and to mark their loved ones’ lives. These are important documents that mark the passage of time and I am so pleased that I made the right decision to send Joshua to school to have his taken yesterday.

Decision Time

This morning is one of those when I have to decide whether to send Joshua to school or not and I am still not sure what to do for the best : Last night he began fitting at the end of his bath, as has become a habit on a Thursday! I let the water out and held his head up out of the  disappearing water, while the seizures began to subside. Our cocker spaniel, Ruby, burst into the bathroom when she heard Joshua’s gutteral noises and she almost leapt into the bath with him. Fortunately as the water emptied, and I was just working out how to help my fitting son out of the bath, his Dad pulled onto the drive, home from work. I shouted at him out of the window to hurry and fetch the emergency medication upstairs with him. We lifted Joshua out between us – I held his feet and my husband had his head and shoulders and we carried him to his bedroom.

He continued to have seizures on his bed, so I administered the Midazolam . Ruby was so tuned into Joshua’s pain, she sat next to him throughout the seizures on his bed, like an attentive nurse. Gradually the seizures subsided, as the anesthetic began to take effect, and Joshua began to drift off into a deep sleep. Ruby and I sat watching him until we were both content that he was settled and the demon epilepsy had left him for another day.

He stayed in bed all night and I had the visual monitor trained on him to observe him. So now I have to decide whether or not to let him sleep it off this morning, or to get him up at 7.45 as usual and send him off to school for the last day of term. There are two reasons for him to go to school : it is the last day before the holidays and 6th form are having a halloween party and also,  it is today when they are taking school photographs. We have had them taken every year that he has been to school and so this final one, would complete the set. I recall that last year, he had been fitting on the way into school so he looked washed out on the photograph, in fact for most of his pictures he has been unwell : I can recall taking him into primary school, out of his sick bed, to have his school photograph taken.

But he may prefer to sleep it off, with a lie in and rest today , and just start his half term holiday a day early. I will need to decide how the day will pan out within the next half hour.

Joshua & Ruby