One more Angel in Heaven

It was a sad day at school yesterday as one of the pupils died suddenly over the half term holiday. I do not know the details but he was only a 12 year old boy and I can only imagine how devastated his family must be feeling right now. The Headteacher and staff will have had to try to explain to his class why he was missing and that he would not be returning and given the range of cognitive ability at school, it will have been a painful message to deliver and not easy to try to ensure that everyone understood. Knowing the school as I do, the children’s welfare comes first and they will do all that they can to comfort his peers and support his family. But it is always shocking when a child dies, someone who has not yet had long enough to grow and live his life to the full. Of course it reminds us also of the fragility of life and makes us want to hold our own children close and protect them as much as we can.

Joshua does not understand the concept of death, as he deals in the here and now and what is in front of him. Joshua adored his Granny who died over 5 months ago , but now that she is not in his life anymore, he has adjusted really well. I have no doubt that if she were to appear again – and I so wish that she could! – that he would greet her with a huge smile and one of his bear hugs; she will not be forgotten, but it is out of sight, out of mind for Joshua. I was away working yesterday and he will not see me again until after school tonight, but he had Yorkshire Grandma and his Dad to take care of him, so he will not have missed me at all. I am confident that he will not have given me a thought, until I turn up tonight when I will probably be treated to a hug and a kick as his greeting. I am pretty certain that Joshua does not have the capacity to speculate where his Granny  has gone or where I might have been yesterday, it is a simpler response to adapt and carry on regardless, so long as his basic needs are still being met. That outlook will be why he has settled in so well at respite, as he simply transfers his affections to the staff who are looking after him and does not pine for home or his family.

In the coming days, our thoughts and prayers are with the family and friends of the young boy and I hope that they can find some peace, somehow.

Holiday End

It is always difficult getting back into normal routine after a holiday away and I always miss spending time with Joshua and my husband once we have been together 24/7 for a week. This time however is tougher than most as I had to travel away with work, leaving home at lunchtime on Sunday so I was also robbed of the end of my weekend .

Joshua and I managed to fit in our weekend supermarket sweep in the morning and he behaved really well this time, pushing the trolley and allowing me to get everything on my list. He only messed around as I was packing the bags, trying to runaway three times but I was quick enough to catch him and sit him back down. I made us a snack lunch , in between packing my overnight bag, then Joshua settled down for a nap on the settee so I kissed his sleeping head then I left.

Travelling solo , when you are only responsible for yourself, is simpler but it is not as much fun either. There was nobody to wait with in the long airport security queues , nobody to share a drink with me as we waited to board and nobody to hold my hand during the turbulent landing. But once I arrived at my hotel , I was free to take a bath and climb into bed, which is all I was fit for. I had photos from home and Joshua needed an early night too, so all was well.

Having been wearing my holiday and mother/ carer hat all last week, I did a quick change and all day today , I will be wearing my at- work hat, leaving yorkshire Grandma in charge of getting my boy away to school.

Homeward Bound

Joshua excelled himself yesterday in terms of how well he tolerated the long drive home: we left our holiday home at 2 pm in torrential rain and we did not reach home for another eight hours. There was a potential 90 minute delay on our ferry due to ‘adverse weather’ as it was so windy, but thankfully we were only waiting 20 minutes before they squeezed us onto the car ferry. He seems to be happy enough while the car is moving, but he would not have been impressed by an additional hour and a half sitting in a queue. Joshua always loves the ferry and he was excited getting into the lift and emerging into the busy passenger lounge. My husband managed to find us three seats together and then he disappeared off to the cafe, returning with a plate of scampi and chips for him and Joshua – I was wary of sea-sickness so I stuck to my cup of tea. Joshua tucked into his late lunch and cleared up his Dad’s left overs too, so it is safe to say that he does not suffer from sea sickness like me.

After an hour, we were summonsed back down to the car deck and Joshua waved at all of his fellow passengers, just happy to be there. We were the third vehicle off and soon ,we were on our way home. Both Joshua and I enjoyed a nap and we only knew he was there after a few of hours, when he began to smack my headrest as he had had enough and wanted to get out. So we stopped at motorway services and he was thrilled to get out and stretch his legs. These services did not have Donalds but offered Burger King instead and I doubted that when it came to a cheeseburger, that he could tell the difference, so I queued while my husband bought us a healthier salad for tea. The service was nothing like as slick as at Donalds and as Joshua left half of his burger and fries, it seems that he was a connoisseur of fast food and he knows what he likes. But the break had served its purpose and he was happy enough to get back on the road . It was only with 30 minutes to go that my headrest was smacked once again.

He was delighted to arrive home and he surprised me by heading up to his bedroom, after just 5 minutes acclimatisation in the kitchen. I changed him into his pyjamas, while my husband unloaded the car, and he pointed at his audio book, indicating that he was ready for lights out already. So to my surprise he snuggled down so I left him to it, telling him how well he had done, and started to unpack a food bag and deal with  dirty washing downstairs. At 11.45 I decided to have a quick bath before bed and I had just lay down in the hot water, when Joshua opened the landing door and stood beside the bath with his leg raised, as though to climb in. I told him that it was too late really then I relented and he had a quick bath before heading back to bed; I figured that he had earned that treat for his patient behaviour in the car all day.

Care in the Community?

I watched the news last night horrified as I saw a broken-hearted mother speak about her campaign for parents’ rights : Her adult son had autism and had expressed his desire to live apart from his family and so he had been set up with a placement in ‘supported living’ where he would have constant adult supervision. He broke off contact with his mother and though devastated, she respected his wishes and left him alone. It seems that nobody was looking after his best interests once she was out of his life. The authorities clearly thought that he had more capacity than he actually did and his status and housing was reduced from supported to ‘independent living’, unknown to his mother. The young man could not cope with day to day decision making and as he missed a review meeting date, his benefits were stopped. He had no advocate or support and eventually his dead body was found in a cupboard after 9 weeks.

Under the current law, his mother had no right to contact or to even enquire as to how her son was, once he had moved away, yet nobody else was picking up that caring role and as a result, he needlessly died. ‘Professionals’ who did not properly know this young man and his capabilities, made a devastating decision about his living arrangements and they did not even need to consult his family as he was deemed to be an adult.

My husband and I watched this news story, horrified, then hugged Joshua closely to us. In many ways, Joshua is actually lucky, as I think life is much harder for those of his peers who appear to be more able than they are. Joshua will never be put in this situation and as such, he will always have his parents there to defend and protect him from the authorities. I do not believe that Joshua is frustrated by living at home with his parents and monthly respite gives us all the break from each other that we need. The much more vulnerable young people have aspirations to be independent and have the same opportunities as their peers – they think that they can live independently, forge relationships or go to college then get a job, whereas in reality they might need a lot of support to achieve those dreams. These young people need to be encouraged in their dreams but the appropriate support needs to be in place to protect them as they are so vulnerable.

The distraught mother that we watched on the news has to live with what happened to her son and she is trying to change the rules so that a positive comes out of this tragic situation. I could feel her pain as I held my own teenaged son close.

Season’s End

So November has arrived and with the weather that we have been treated to this week, there is no doubt that Winter is here. While this week I have enjoyed the benefit of an earlier sunrise around 6.45, the skies have been too grey and cloudy to treat me to any dramatic orange glows as the sun first makes it appearance,  the daylight closing at 5 pm is a terrible price to pay: it means on work days, that we will arrive home in the dark. There will be no more beach walks after work, only the occasional ramble along the street-lit prom if the dogs are lucky.

For some people, Seasonal Affective Disorder (SAD) takes hold in the winter, when there is less daylight around, but this has never been a problem of mine. There are elements of winter that I love :wearing boots and woolly jumpers, taking a walk on a crisp, chilly morning then returning home to snuggle in front of a roaring fire, feeling cosy, safe and warm and shutting out the elements. Joshua is not a fan of the outdoors, but especially in the winter. He has poor circulation, so his feet and hands are always icy and the only way for him to warm up properly, is to soak in a hot bath, then slide into his PJs. I have not noticed the cold being a seizure-trigger as much as the hot weather is but it is a problem, and he often gets blue fingernails when his fingertips get too cold.

So it is time to adjust our wardrobes and our plans in line with the weather. Some commitments will start to be ‘weather permitting’ as snow, ice and fog start to get in the way of our plans. I will have to start to remember to go everywhere with a coat and live my life more indoors than it has been in recent months. Joshua has been generous with his cold germs and has distributed them across the whole family, so we are heralding the arrival of winter with a traditional cough and sneeze.

After bonfire night, Christmas is the next event to look forward to and I have already given a lot of thought to the festive season and how best to get through it, without Mum being around. I now have a plan that I hope will work out, with a combination of busy-ness with visitors and some built in quiet time to reflect too. There is a service at Mum’s church in early December that I hope to attend, when we can light a candle for and remember lost loved ones , which is  a lovely idea as Christmas is such a painful time for so many people, something to be survived. But survive it we will, life goes on and the seasons will change, whether we are ready for it or not. We have to endure the hardships of winter, to be able to appreciate the arrival of spring.

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.