Our Big Night Out

(We are having a great holiday so far and I have written a couple of blogs which have not saved or published, so if this does not work today, I will take a break for the holidays as the technology is too trying, when you are staying somewhere without wifi)

On our first day on holiday, we went to a country show where one of our favourite local bands, Lucid, were playing, and we were greeted like old friends , with hugs and catch up chats. My husband and I enjoyed the performance, but Joshua found the heat too much and slept on me, laid out on a haybale, throughout. We were told that they had a local evening show too, at a bigger venue, so after a quick nap at home we headed off to see them for the second time in the same day. It was a much bigger crowd and stage and with it being cooler too, Joshua certainly preferred it. He watched the show some of the time and pushed his own wheelchair around some of the time. He made a few new friends, as he tends to do at this events : a security guard came over to ask if he was a Fleetwood Mac fan, He high5’d a few members of the audience and one young girl asked me if she could say hello to him, of course I gave me permission : it turned out that her older sister has cerebal palsy and we had quite a chat. She apologised if she was being patronising towards Joshua and I explained that she was not, but that it was those who smiled, said ‘bless’ and thought how lovely that he was out having fun, that had the more patronising outlook.

Joshua clearly enjoyed himself and I think although he was wandering around amongst the crowd, he was probably less disruptive than some of the drunken obervers who were balancing on each others shoulders and bumping into other dancers.

After the Lucid performance, we stayed on and enjoyed another band, who sang familiar covers, and we did not leave until 11pm! Given that Joshua is usually in bed at 9pm and  am not too far behind at 10ish, this was indeed a Big Night Out for us, and he was asleep as soon as his head hit the pillow. He was pretty dozy yesterday, lounging around, chilling most of the day. At 3pm we went down to the beach and hired him a lounger to lie onand watch the tide coming in. He dozed and we swam in the sea, with him clearly in sight. As I lay on the rug, drying in the sun, I heard a familiar snorting and heavy breathing and jumped up to see Joshua having a seizure, which  ran into one after the other. In the end I had to administer his rescue medication on the beach and he slept it off on his lounger, until 6pm when they wanted to pack them away and so we had to wake him and bring him home. Sadly the seizures were the result of two of his key triggers : heat and tiredness, so he is extra-vulnerable on his holidays, when you add in excitement. No more big nights out for a while, until we recover from this one fully.

We’re all going on a summer holiday, no more working for a week or two….

I have had a stressful month at work but now I can forget all that as I am not due back there until 20 August, which is an amazing break. We are going away on a family holiday – a staycation with our two dogs. It is not just that I am looking forward to a break from work, but I am really looking forward to spending some leisure time with my two boys! Apart from weekends, I have not yet shared Joshua’s school holidays with him, he has been at Respite, with Dad or mostly, with Yorkshire Grandma. So now it is my turn…

Joshua is great company at the moment : he is much more interactive than he once was and more communicative too. He is able to request what he wants more than he once could. And with his new found voice, he is able to express his wicked sense of humour much more so he really makes me laugh. He enjoys stealing glasses off your face or sunglasses off the top of your head, laughing and shouting ” No Glasses!” at the same time, for example.

I really enjoy some early morning time to myself, before either boy wakes up. I will take the dogs on the beach for walks at sunrise , have an early swim, read a trashy novel or go for a bike ride. Whatever I do, it will be my choice and my time for me, as I don’t get too much of that.

Hopefully we will be able to put the dentist trauma and the heat-induced seizures behind us, so that we can have lots of family fun together. My sister/Joshua’s aunt is hoping to join us too for a few days, it will be great to see her and to share our holiday home and favourite haunts with her. She may also offer to take care of Joshua for us, while I go for a bike ride with my husband or maybe a drink one night, so that is a bonus too.

See you on the other side, happy summer.

Here comes Summer!

Joshua will finish his first full year in 6th form on 24th July, which seems unbelievable to me, where did that year go? It seems just a blink of the eye since I was anxious about his big move upstairs and his early days when he was kicking at closed doors, trying to escape. And now he will be moving to his second year out of three, so if that one flies by just as fast then we are in trouble.

But before I can think about Joshua moving classes in September, we have the long summer holiday to contend with. We will go away on a family holiday for two weeks of the six weeks off school and so we need a plan for the remainder , when I work Monday to Thursday. It is quite a logistical juggling act to manage childcare during the holidays but I think I am sorted now.

But I know that school holidays are a stressful time for many families with children with special needs : the change in weekly routine can unsettle many children; I have heard of some families having to drive to school to show a pupil that it is really closed. We are fortunate that Joshua slots into the holiday routine and he tends to make the most of lie-in opportunities whenever they arise and that he does not fret or question a change to routine. Joshua has always faced life as the ‘here and now’, I do not believe that he thinks about the past or worries about the future, he deals with whatever is in front of him. I often think that my life would be easier if I approached things like my son does.

School holidays can be an isolating time for many parents and children, as they lose the social contact and structure that school provides. Not many of our children will receive invitations to play round someone else’s house in the holidays, as would happen for mainstream children. I have tried to remedy that , on a small scale, by inviting four mothers and their children round for lunch, hopefully in the garden, in August. It can be hard to find things to occupy our children in the holidays as they are used to a structured and busy school day.

I asked at one of my parent coffee mornings just before May half term what they planned to do in the school break and I received one reply which was “coping”. Another has described the summer holidays as the most stresful time of year as their hyper-active autistic son requires close monitoring for all of his waking hours. That for me sums up the issue for our families. I know that many mainstream pupils will complain about being bored in the holidays, but for our students, it is not just about boredom, it is about so much more and many parents will already be counting the days until the new term in September.

Dance like nobody is watching

While we were on our short break last weekend, I was on the deck of the ferry while my husband was watching the England Word Cup match. I sat on the warm deck to read my book, feeling as though I was on a cruise! I heard some excited shouting from the deck above me and when I looked up, I saw a young man with Downs Syndrome. He was having a brilliant time being buffeted by the wind, he was leaning into the breeze and pretending to be blown away by it. I sat watching him for ages, he was so happy and absorbed in his windy game and he had no inhibitions at all about the noise that he was generating, but I enjoyed the happy sounds.

His father was close by, but not too near so as to cramp his son’s style. I admired that approach and it reflects how I tend to be with Joshua too – he needs his independence and to have what he finds fun, even if it is not the traditional view of what teenagers typically do. I try to stand back when Joshua is dancing or exploring in public, he cannot be left totally alone due to his seizure activity and his lack of sense of danger, but I do tend to keep at a safe distance, so that he can feel safe but also gain some sense of independence, no matter how small. I have now found peace with other people’s staring or reaction to Joshua bouncing in front of a busker or waving at strangers in a cafe. If it makes him happy and does not harm anyone, in fact those two things actually benefit others, then carry on Joshua and fill your boots, I say!

As we get older, typically we worry more about what others think of us and our behaviour, as a result, becomes more inhibited and less natural. This boy on the deck was loving the sensory experience of leaning into the gusty wind, he was having fun and not caring what anyone else thought of him. I think that he had the right idea and I wish many more of us would feel free enough to ‘dance as though nobody is watching’ as I was able to share his joy, just by watching him.

The Best Laid Plans

Tonight my husband and I are going on a short holiday overseas and we are repeating a trip that we did both before Joshua was born and when he was a small boy, who was towed behind my husband’s bicycle. I am hoping that now we are both older and heavier ,that we can still manage the cycling.

But we are only able to go away because of the kindness of others and I am most grateful for that. Joshua will go home after school , and stay overnight with a trusted friend tonight. I am really hoping that he does not wake at 1.30am , as he did for me last night, for her!! She will take him back to school in the morning and from there he will be collected, as usual, by taxi and driven to his respite provision.

I asked them months ago when I first thought of this idea and I was encouraged to go, I was reassured that they would handle whatever Joshua threw at them – whether that is cushions as usual, or perhaps more seriously chicken pox – he has been itchng his tummy! – or a cluster of epileptic seizures that require rescue medication before they will stop. I trust them completely, he has been going there for 3 years now and I know that they are very fond of him and that they take his changing behaviour in their stride: when he first started there, Joshua was asleep in the corner all of the time and they had to plan activities around his sleeping. Now our lad is unrecognisable as he bursts onto the scene , refusing to be ignored. He is no longer passive but he expresses his opinions such as refusing to eat their meals but relishing an outing to his favourite “Donalds” and he is always awake during the day and usually sleeps through at night.

But despite his more vocal, lively presence , they encouraged me to make the holiday booking and to simply give them an emergency contact ‘just in case’! I have gone overboard and given them three willing contacts : Yorkshire Grandma, his Aunt and my friend. So thank you to them too, I hope that they are not contacted – I do not expect them to be – but if they are, thank you for doing the right thing by Joshua, as I know you will.

So having planned all of Joshua’s care, it only remains for us to cycle off into the sunset tonight.

Nose to the grindstone

I did not really feel ready to go back to work yesterday as I felt in need of some time at home to acclimatise. We always like to squeeze the last moments out of our holiday, by not leaving until Sunday afternoon, but the downside of that is the rushed feeling of just a few hours turnaround. I know that the more sensible approach is to leave on Saturday or at least on sunday morning, but we have never been sensible where holidays are concerned as we have always been ruled by our hearts not our heads. But as a result, going to work yesterday was a struggle. Having had over two weeks with Joshua, it felt odd kissing my sleeping teenager goodbye in the morning and then he enjoyed a day on the beach with Yorkshire Grandma. I saw him awake when I got home, while he was eating his tea, but after that he snuggled down to go to sleep in his armchair, so I complained about only seeing his eyes open for around 20 minutes all day.

We live in a seaside town so I seemed to be surrounded by holiday-makers, which did not help my feeling of injustice and feeling sorry for myself. I queued home in the car at lunchtime, due to congestion of tourists, so I decided to cycle back to the office in the sunshine – partly to bypass the queues and to be healthier, but also in an attempt to re-capture some holiday spirit and it worked well. So much so that I may cycle in today too; I will not win any medals for speed but it is a fun means of transport and my 2-3 mile commute is just the perfect distance for me. But I did warn my colleagues at 3pm that I was now accustomed to an afternoon siesta and so I may have nodded off at my desk, but I managed to keep active to prevent that from happening, even though my eyes wanted to close briefly for a power-nap.

I was relieved when it was time to cycle back home and I heard Yorkshire Grandma’s tales of the day and of the two weeks while we have been away.I know that today will get easier and soon I will be back in the swing of my routine. This is simply the price that I have to pay for having had a good holiday. And lets face it, we have a long Bank Holiday weekend coming up just around the corner…..

Back home

We are very fortunate that Joshua is such a patient traveller, he is not demanding at all. We loaded him into the car at 12.30, as he obligingly slept through the tidying and packing up. He had some brief entertainment on the 45 minute ferry journey, which was stunning as the sea and sky were blue and we sat on the top deck watching the world go by. But once he was back in the car, he did not get out again until we got home at just before 8pm. He dozed, enjoyed music, ate snacks and looked out of the window, but never complained once. As we got 20 minutes from home, he started to bounce in his seat; he clearly knew where he was and he was happy about it. Joshua has always been a real home-boy. This homecoming was no exception, he was delighted to be back home and he was soon installed in his armchair, enjoying the much missed ‘Show’, which was not interrupted by Olympics coverage as Daddy has his own lounge and television for sport!

Surprisingly, as he had not exerted himself all day, Joshua was ready for bed after he had eaten tea. As I return to work today, Yorkshire Grandma will be taking care of him for the next two days, which I am sure they will both enjoy. She says that it feels as though she has not seen him forever, so that will be a fun reunion I am sure; he will enjoy the change of company as he has been limited to his parents for the last two weeks!

We were welcomed home by the pets who we had left behind, in Yorkshire Grandma’s care, and they instantly recognised that Jack was unwell and they inspected him from head to toe. Now that we have brought Jack home, it is sad decision time.He is so weak now that he staggers around like a new foal, struggling to get his balance. He has defied the vet’s prediction and clung on until the end of the holiday, but he cannot go on much longer now, so we need to be brave and do the right thing .

Now the end is near…..

Well it is time to pack up and clean up and head home  and back to work in the morning. We have been truly spoilt with amazing weather for our full stay and the sun is out again this morning. We enjoyed another afternoon out on the beach yesterday, which started with lunch in a beach bar: Joshua was in his element with live music, a sea view, a glass of orange juice and some fish and chips, what more could anyone want? We all dozed off our lunch on a rug on the beach but were sadly disturbed by Joshua having his third seizure of the holiday, so thereafter he lay dazed on the rug but would not close his staring eyes. My husband and I took our last swim in the sea , leaving Max the dog in charge of Joshua on the empty beach.

Joshua had some tea back at the house and then we headed out again to watch the final performance of the local band that we follow, they were not performing until 9pm. It was a totally different atmosphere last night to the previous week as the tourists and visitors had mostly gone home and so it was a smaller audience, of mainly locals and the staff who had been manning the food and drink stalls for the past week. Joshua enjoyed most of the act, only laying his head on his knees, once or twice but he was jigging in his wheelchair for the grand finale. A lady sat next to me and asked when he would be dancing, as she had seen him the previous year and she was disappointed when I explained that he was rather wobbily still from his earlier seizure. But his enjoyment of the music had clearly made an impression on her.

We stayed chatting after the show and then enjoyed the freedom of the emptier streets with the wheelchair and it was easier to leave, knowing that the entertainment was over too. We will be taking a very weak Jack home with us too, as he has defied the vet’s prediction and has kept going. He will not be galloping across the sand for his final beach walk, but he will potter in the garden before we set off, saying his final goodbye to a happy holiday home.

We are very fortunate that Joshua is a patient traveller, as we have a six hour minimum journey ahead , but the long drive has truly been worth it. Until next time, my happy place.

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

We have now been on holiday for a full week and the great news is that we have another week to go! I think that we are all fully adjusted to holiday life now, Joshua sleeps in until midday and I even slept until 8am this morning. We had a lovely afternoon on the beach yesterday and we even splashed out on three loungers, with mattresses, to make ourselves comfortable. Our loungers were right on the shore when we arrived and Joshua excitedly watched the tide recede and he loved watching the people playing in the sea with surf boards and footballs. So it made for an unusually relaxing afternoon as he was happy to stay on his lounger as his eyes were occupied. So my husband and I took it in turns to take naps and I fetched snacks and drinks to consume.

Towards the end of the day we went for a swim in the sea, I was more reluctant than my husband but we took it in turns to stand with Joshua on the shore while the other dared to splash through the waves. Joshua enjoyed watching but he was not even willing to paddle in the sea. As ever, it felt cold at first but once the shoulders were under the water, it felt warmer than the breezy air. We teased Joshua by chasing and hugging him in our wet  swimming costumes so that he got a flavour of the salty sea!

We dried off back on our loungers and my husband bought cups of tea and a slice of madeira cake to warm us up. Again unusually Joshua was happy to return to his lounger, instead of insisting on leaving once he had stood up, so we stayed a while longer. We were joined by a father with an autistic teenager, Matthew, who lay in the sand, splashed in pools of seawater and asked his father endlessly for the time and what was happening next. His father was clearly exhausted by his visit to the beach and in the end, he put headphones on to listen to music rather than face any more questions. On this occasion, Joshua was not such hard work, but he has had his moments on the beach too so I could empathise with Matthew’s Dad.I really appreciated our afternoon on the beach yesterday and I hope that we might get the weather to repeat the experience again next week.

Joshua Go!

I have been reading this morning about the positive impact that the game ‘Pokemon Go’ has been having on some autistic young people. That these autistic teenagers have been encouraged to go outdoors and take some exercise for the first time in their lives, in order to find the Pokemon characters. Indeed I saw several young men out on the cliff path yesterday, while I was walking the dogs, all gazing at their mobile phones and running around in random directions. If the game has had a positive effect on introverted sufferers of autism, then it cannot entirely be the damaging phenomenon that the media have warned us about. Parents are reporting that they are having family days out for the first time and that their autistic children are getting more exercise too, while dashing around in search of the elusive characters.

As a small boy, Joshua loved the outdoors, he seemed to prefer it and he could spend hours on the beach, standing on the shore, watching the waves coming in and going out again. Yesterday he was awake at 5am, contrary to his usual holiday sleep pattern and a sign sadly of things to come, and he was full of beans. We took him down to the beach and I walked him out of his wheelchair down to the shore, as the tide was in, it was not far. He glanced at the sea then turned around and dragged me back to his waiting wheelchair, so I guess he was not in the mood for sea-gazing. So instead he ate a chocolate brownie in a cafe right on the beach, where in the past he would have been itching to get onto the sand, this time he sat people watching and enjoyed his sticky treat.

It can be difficult to entertain Joshua sometimes, when his favourite activity is to stay at home and watch his favourite DVDs over and over. Even when he has enjoyed a fun time out, he is usually most excited to return home to the familiar, which can be disheartening when we have tried hard to amuse him with something that he used to enjoy. So that is why we need to be more imaginative and continually expose him to new activities and interests, as he grows older.

So long as Pokemon Go is supervised, where players may not be able to keep themselves safe, then it sounds like a fun game and I am glad to read that it is benefitting some members of the autistic community, as the media only had horror stories to share when it first appeared on the scene. Technologoy can be used positively to bring light into many lives.