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.

Joshua’s Big Night Out

We had a lazy day in the garden yesterday, reading in the sun, so we were ready to play out last night so we went to the cinema. I know that there are special autism-friendly screenings, but we are fortunate enough not to require them as the worst that Joshua can do is fall asleep generally in the warm, dark comfy chairs! Joshua and I went to see ‘Finding Dory’, while my husband saw a different film that started at a similar time, and true to form we had eaten our popcorn before the advertisements had even finished.

When Joshua was younger, he used to get very excited about going to the movies, so much so that we saw ‘Madagascar’ three times on holiday in Canada when he was 6! I think it was the huge screen and the loud soundtrack that he enjoyed.  But he played it much cooler nine years later last night, until we were in our seats near the front, where he began knocking his knees together – always a happy response – and he gazed intently at the huge screen in front of him. He sat still in his seat for 2.5 hours and only had a brief nap of ten minutes, when he rested his head on his knees, and he shouted out ‘Monkey!’ when he awoke, so I would consider that to be a great success. We stayed until the end of the credits, as he likes to do, to enjoy the music and added animation, and were treated to a bonus part of the film which everyone else in the theare missed.

We waited in the foyer for Joshua’s Dad, who had also enjoyed his film, and we went to an italian restaurant for a late evening meal, as it was now 9pm. Again Joshua behaved beautifully, enjoying his big night out, and he happily devoured his lasagne. We were too full to face the tiramisu , so declined a dessert and came home. He was still perky when he got back and I even wondered if he would settle in bed but we had no trouble at bedtime and he slept through until 5am this morning when he woke up calling out ‘Monkey!’ once again.

I suspect that it was a successful night out because we had not expected too much of Joshua during the day : he had enjoyed his usual midday lie in, and once dressed, he had not left the house all day but had enjoyed a homely, laid back day, so he was more than ready to be more entertained by the evening.

Fiestas and Siestas!

While Joshua slept yesterday morning, my husband and I were able to go off on an 8 mile bike ride as Granny was able to listen out for him, even though he did not move a muscle while we were away. We cycled four miles to a Farm cafe where we planned to have coffee and lemon drizzle cake for eleveneses, but my order turned into a delicious vegetarian cooked breakfast, which I thoroughly enjoyed. It felt like a real treat, not just because it was delicious but because, as Joshua will not rise until midday on his holidays, we never get to go out for breakfast, which I enjoy doing. So this was an insight into a world that we never get to glimpse at.

Granny is packing up and leaving us now, so our happy party of 4 will become three, as she heads home. It has been fun to both share her company – we played putting after lunch yestetday and that was funny! – as well as making the most of her willingness to mind Joshua. We will do more solitary activities from now on, taking it in turns to go to the shops and ride our bikes, while the other watches over Joshua in the mornings, but then family jaunts in the afternoon. The dogs enjoy their early beach walk while everyone else is still sleeping, as we slip out quietly- well until one dog lets an excited yelp out! Yesterday I was out walking at 6am, saw the day begin and the beach come to life, and then went back to sleep for another hour, which felt very decadent too.

Given the odd hours that I sleep, part of a holiday for me is being able to have an afternoon siesta, whenever the mood takes me, something that might be frowned on when at work!

Last night it was the carnival parade for this town and the high street was lined with a crowd of excited onlookers. This is something that I can recall enjoying as a little girl and I can remember the excitement as we heard the marching bands approaching. Joshua jigged up and down in his wheelchair to the  different music that we were treated to  and the effort that had gone into the floats, fancy dress and dance routines, was very impressive! We watched the whole parade as it passed by  and cheered the participants on. Another fun day!

Getting into our stride

What a perfect first day of our holiday : Joshua slept until midday after his late night, so we were able to go down the town and have a coffee on the beach, while Granny listened out for her grandson.We all three relaxed in the garden before deciding that Joshua had slept long enough and I took his his cereal in bed and a pancake, to wake him gently. He was slow to come around but was delighted to see Granny here, as though the night before might have been a mirage.

We walked the couple of miles along the cliff path to the next seaside town, where we sat outside a favourite pub for lunch in the sunshine. Joshua enjoyed his fish and chips, despite his breakfast not being long before then we walked back along the prom, wondering at how quiet the beach was for a sunny day in the school holidays. Worn out by our exertions, we sat in the garden when we got back, although Joshua curled up on the settee indoors, and in no time, I was in a deep sleep for two hours.It was just what I needed, although I felt rather disoriented when Mum woke me up.

After tea, my husband and I made the most of having Granny around, and we went for a 6 mile bike ride at dusk as it was a beautiful evening. I gave Joshua a bath when we got back and he went back to bed without any fuss. So all in all, it was a great start to our stay here. After the long drive down, we never like to drive anywhere on the first day, so to walk and cycle everywhere was perfect.

It is not just Joshua who likes to holiday somewhere familiar, but I love it too. You can settle immediately into your holiday stride as you know where everything is and it feels as comfortable as home. All the sights, sounds and smells bring back such fond memories of happy family holidays during my childhood and there is something special and reassuring about that. So I am feeling very fortunate and privileged right now.

So happy to be back

It was a busy day yesterday, with two meetings and then a train ride home. I got back at 5pm and we made the final touches to the packing, and left the house again by 6pm, which was our best ever turnaround. Joshua sat up front with his Dad, while I dozed and supplied snacks for the boys from the back seat. About half way to the port, Joshua realised where we were going and he started to giggle and jig up and down in his seat, excited to be going on holiday. He was still awake as we arrived at the port at 11pm and waited for our midnight ferry. He stretched his long legs on the crossing, enjoyed some toasted teacake for supper and did not object to getting back in the car.

We arrived at our accommodation after 1am, so just sneaked the dogs and a few bags inside and slid into the beds that Granny had kindly made for us. We must have disturbed her as she popped her head in while I was getting Joshua ready for bed and he gave her a huge grin. As he has been coming here several times a year all of his life, this is like a home from home for Joshua – and for me for that matter! So he quickly fell asleep, with none of the unsettled wakefulness that we have often had in a hotel. He is still asleep now although I have noisily unpacked around him and I am sure that he will be thrilled to re-discover where he is, once he wakes up.

Now that I am on holiday, the times of my blogs being published may be more hit and miss, but I am sure to log our adventures and observations as we make the most of our two weeks away together.

Out of Control

Joshua seems to have enjoyed his first experience of Summer school: he was excited to go there and he came back with his face painted like a dinosaur! He has never had his face painted before, he would not tolerate it in the past, but apparently the face painters were two ‘young pretty girls’, so he will have enjoyed their attention. He was still giggling at his own face in the mirror last night, before I washed it off in the bath.

But perhaps it was the excitement, or maybe it was the seizure that he had at 4pm, at home, but he did not sleep last night at all. I stayed with him trying my usual tactics – a cuddle, a story, some cereal and finally at 1am , in desperation, I reached for the sedative. When I left him alone in the dark, he started calling out to me, so at 2am I delivered him to my husband and told him that I needed some sleep. I managed to grab 3 hours, before I awoke and heard him watching ‘Lion King’, calling my name and wandering about in his bedroom. So I got up and have brought him downstairs for an early breakfast and his medication. While I am up early, I have baked some brownies to distribute on my travels, so every cloud….

I wonder if he knows on some level, that I am going away this morning, staying away for work overnight. Does he realise that I will worry about him more now as he looks to be threatening another seizure? I will be leaving him in his Dad and Yorkshire Grandma’s capable hands, but nonetheless I will still fret that I am not here, taking care of him. When we are apart, my imagination can conjure up terrible scenarios, especially when nobody answers the telephone. I will be back tomorrow afternoon, but until then, I have to hand over the reins and trust in my stand-ins.

Faith in Fate

Do you ever feel as though someone, or something, is controlling your life? That situations are being contrived so that you meet certain people who you were pre-ordained to meet? I regularly feel this way, as though an odd twist of events, means that I meet someone who becomes a friend, or even an acquaintance, and it feels as though it was ‘meant to be’. This could be God’s influence, or possibly a Fate Fairy, but as I get older, I am more convinced that events in our lives happen for a reason and I get comfort from that.

Our lives would have been very different if Joshua had not been born with his disability : this whole world of disability would have remained mysterious to me, although to be fair, I do still, even after 15 years, find it bewildering. Our careers would probably have taken a different turn and we may well not have stayed in the same home for 21 years. There are so many friends, acquaintances and professionals who we have met because of Joshua’s disability and it has placed me in situations, such as in special schools or in hospitals, where I would never have tread otherwise. I would not have written this blog for 14 months if Joshua did not have special needs.

I am not sure how my life will pan out, what is in store next for me, but I am going to continue to grab the opportunities that present themselves and simply see where that takes me. It helps that I am not a big planner, as that way, I am open to unforeseen opportunities and it is exciting not really knowing what is around the corner.So even if I do not have a plan, I feel as though there is a plan for me, so I will trust in that and go with the flow.

Having my cake and eating it too

This is the first morning of the school holidays, when I will slip out of the door leaving both my son and husband fast asleep in bed, as they do not have to get up particularly early. I am glad that I will only have a week of that before we all head off on our family holiday. Yorkshire Grandma is taking care of Joshua today and I asked her to come round at 10 so that he gets his holiday lie in. I expect she will pack him up a sandwich and some crisps, so that they have a picnic on the beach, as the sun is shining already. I will try not to dwell too much on what they might get up to as it can make me both jealous , that I am not involved, but also can make me feel guilty that I am working, rather than taking care of my own son. But today is a particularly big day at work, and so I do not need my head to be cluttered with negative thoughts like these, but instead I am focussed on my own challenge and am just grateful that Joshua is in safe hands and will have fun.

I have mentioned before my belief in positive thinking and the impact that it can have. It is well documented that cancer sufferers who believe that they can defeat that terrible disease, have better survival rates than those who give in to it. In the main my glass is half full, except for low periods when suddenly it spills empty. I prefer to see the good in people and I strive to find silver linings, even where they are elusive. Joshua’s headteacher once described me as ‘relentlessly optimistic’, which I took as a compliment as I find that if you expect the worst to happen, then more often than not, it does and it can become a self-perpetuating cycle of negativitity. I am sure it is a means of self-defence, but it works well for me.

Joshua may well have inherited his happy-go-lucky outlook from me and I am sure it improves his quality of life too. He takes for granted that he will be looked after and will be loved wherever he goes. He never questions that his smile or hug will not be reciprocated and it rarely is ignored. Neither of our lives are turning out quite how we imagined, but we are going to make the best we can of every day.

Hello playmates!

There are some days when Joshua does not want to do anything all day, but stay in bed and laze about but Joshua was on good form yesterday; he was pretty active and he stayed awake all day , as Yorkshire Grandma often describes him, he was an angel all day. There was lots to see at the 1940s event that we attended, and dressed up for, as the market square was bustling with landgirls, military uniforms and vintage dresses, although Joshua refused to keep his flat cap on his head – he has never tolerated headgear. The shops and cafes had made a real effort too, decorating their establishments with memorabilia and with crosses across their windows and sandbags at their doors. We even joined in, to be taught how to do the Lambeth Walk, so there was plenty for him to see and hear,even if the 1940s meant nothing to him as an era.

We went back to the house to change clothes before heading out again for a meal. I had a power nap, as he had kept me up much of the night before, but he stayed awake. He objected to getting back in the car just an hour after getting home, but he was persuaded that it was necessary if he wanted to eat. He ate most of his lasagne and behaved well in the restaurant, only needing to walk outside once while we waited for our food to arrive. Then we walked off our excesses with a river walk at the end of the day and he adored throwing stones into the river for our spaniel to fetch. He walked well and without complaint when we reached the hilly part where we had to abandon his wheelchair. It was dark by the time we got back to the car, but it was such a  warm night.

After all that exercise, food and being alert all day, it was no wonder that Joshua fell asleep, as did I, almost as soon as his head hit the pillow. If the rest of his summer holiday is as active and busy as yesterday was, he will be ready to go back to school for a rest!

 

So long school!

I am delighted to report that my final parent coffee morning of the school year was my best-attended yet – we saw some new faces and some returning faces too.  But my sadness was  that two mums, when I asked what they were doing for the summer, separately replied that they would be ‘trying to survive’ and ‘breathing’. This brought home to me, with a sobering thud, just how tough the six weeks holiday is for some families; especially those with no respite and with children who have behaviour difficulties. For them, school represents respite, it is their only break in their challenging lives and it gives life back to them. I heard about one child who is so rigid in his routine that for the first 2 weeks of the holidays, that his parents have to drive passed school everyday to reassure him that it is really closed and empty. So when the staff wished us all a good summer, that may not be possible for many familes, whose only goal is survival.

For the first time that I am aware of, Joshua’s school is offering some additional assistance in the holidays, by offering a fortnight of summer school. So after all his farewells, he will actually be back at school on Tuesday, from 10am until 2pm, for swimming and other activities that I signed him up for. Joshua is only going there once as we will be away on holiday for the second week of summer school. That is a great idea, for the parents and we are grateful for the staff who are prepared to give up some of their summer holidays to support this service. I am sure Joshua will be happy enough to return on Tuesday but it may well confuse some children even further, being told that it is school holidays then returning to school, but not to the classroom or their normal teachers.

The school staff use their long summer off to re-charge their batteries, but there will clearly be many parents who are already counting the days until the school routine returns in September. I feel fortunate that I do not feel any anxiety towards the school holidays this year, as Joshua needs to re-charge his batteries too and I have holiday plans – we have got a fortnight away booked in soon – and childcare in place for when I am at work. But based on the opinions shared around the room yesterday, I may well be unusual in my outlook towards the summer. So, here’s to survival and keeping breathing!!