Resilience is one of the things that having a child with special needs teaches you. We get so many knocks along the way. just when you think that things are settled and you are heading for a period of stability, then wham something unexpected will knock you off your feet. Yet with practice over the years, special-needs parents learn how to pick themselves up off the floor and how to carry on. They say that ‘whatever does not kill you, makes you stronger’ and that might well be the case. When you have fought tooth and nail to get your son into the best school, or when you have made the painful decision to opt for brain surgery, then other setbacks pale in comparison. It certainly helps you not to worry about insignificant problems, as these are put firmly into context as you focus on what really matters.
I do not think that having Joshua has made me tougher, but it has certainly made me think differently about the everyday problems that come and go. I can recall a friend who had her baby at the same time as Joshua was born, telling me that I had the right personality to cope with him, whereas she was a nervous wreck and would worry continuously. I may well have the right outlook for survival, but she would have changed, as I have done, if she had been lucky enough to have been Joshua’s mum. I can also recall going for a walk with my mother in law up our lane, just as Joshua had learnt to walk in his new splints and she was gasping with anxiety at every step, terrified that he was going to fall, yet I was letting him run. Another friend was hovering around the trampoline ready to ctach my bouncing son if he should tumble off, amazed at how casual I was about the potential risk. But I was focussed on the fun he was having in both cases, which seemed to me to be worth the risk.
I am not immune to anxiety but I do seem to have developed a knack of taking many of the challenges that we face with Joshua, into my stride, probably for survival. I was dreading letting Joshua go away for respite for instance, initially I resisted it like mad, but now that I have satisfied myself that he is both happy and safe there, I have no more concerns and we look forward to the break, as we should do. I no longer sit beside my phone in case of emergencies, I am much more relaxed about being apart from Joshua as I have complete faith in his carers there.
None of us know what is around the corner, but hopefully when we get there, we will face it head on and even if it knocks us off our feet, I have no doubt that I will get up again as that’s just what we do.
We had a quiet day yesterday , mostly staying home, as Joshua did not sleep at all the night before, due to the after-effects of his seizure. We managed to keep him in bed all night but that was through a combination of films on my ipad and wrestling him down onto the pillow. I did the first shift from 10ish until 4am, but I gave up then and woke my husband to take over from 4 so that I could have some sleep too. When I woke three hours later, I crept into Joshua’s room , delighted to see him lying curled up in a sleepy position, but as I peeped at his eyes, they were still staring, blood shot and open! His eyes stayed that way all day too, he looked awful, as though he really needed a good sleep but his brain simply would not allow it.
He stayed indoors all day, wearing his helmet, as he seemed to be threatening more seizure activity, so he simply alternated from the settee to his bed and back again. It was such a sunny day that at 6pm I decided to take him out along the promenade for some evening sunshine with the dogs. There was not a cloud in the blue skies, it was stunning, and Joshua jigged in his wheelchair and enjoyed the beach tour too. My husband took the dogs onto the sand and they enjoyed the play too, as they had become resigned to a garden day.
As Joshua was brighter than he had been all day, we opted for a spontaneous meal out in a beautiful restaurant overlooking the beach. They squeezed us in and we watched children and dogs playing at the shore, then two horses galloped by as we waited for our order, so there was plenty to occupy Joshua. He ate more of his fishcakes than I expected him to but my husband and I virtually licked our plates, our dishes were so tasty, so it turned out to be a very satisfying walk indeed. Whether or not it was the fresh sea air, change of scene or the meal, I am not sure, but when we got back to the house, staring Joshua finally closed his eyes on the settee and he continued to sleep once I transferred him to bed, where he is still asleep now, which is a much better outcome than I was dreading.
We went to a country show yesterday for the day so Joshua had been warned that he had to get up and out by 10.30, which we did not quite make but we were on our way before 11, which is good going for us. The setting was spectacular – blue skies, blue sea and white cliffs were the backdrop for all of the white marquees and the sun shone brightly all day long. We browsed up and down the rows of stalls and visited the craft tent, before settling on a hay bale to enjoy our favourite local band, who we have been enjoying for years now.
As they were setting up , Joshua enjoyed a sausage roll for lunch. As we were in full sun at 1pm, my husband bought him a sun hat which of course Joshua would not keep on his head. So I stood next to him, holding his left hand, to prevent him from removing his new hat. I had been there about a minute, when an elderly man sitting behind us told me to sit down as he could not see. I explained that I just needed a short while for Joshua to forget his hat was on, and then I would be out of his way. He continued to grumble at us and so I knelt beside Joshua and asked if that was better? The hat was thrown off and I now felt uncomfortable and so we moved into the shade of the beer tent, from where we watched the rest of the performance. The man’s wife approached us during the show to apologise for her rude husband and excused it by explaining that he had alzheimers, so of course, my sympathy went to her having to deal with his grumpiness and aggression. I told her that she had no need to worry and I tried to make her feel better by telling her how much more pleasant it was in the beer tent anyway.
But I also felt the kindness of strangers in the tea tent later on, where Joshua had a seizure at the table, possibly brought on by the heat. We both tried to make him feel more comfortable, with my husband seeking out a damp cloth to cool him down and I tried to keep his straightened limbs away from the wooden tressle table, where he was midway through his victoria sponge. I then put our rug on the table for Joshua to rest his head as he recovered. We had been closely watched by many other customers and while I was on my own with recovering Joshua, she approached to offer her assistance and gently touched my arm as an indication of her support. I told her that we had things under control, but thanked her and was very touched by her offer, as so often people stare but do not know how to help, so say nothing. But we moved on once he had recovered, but sadly we knew that it meant that he was not going to sleep last night as the aftermath.
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.
I am dreaming more vividly while on holiday and I guess that is because the quality of my sleep is different to at home, or perhaps because my mind is not as active during the day , as I am more relaxed, so it is busier while I am asleep. Even my husband warned me not to go paragliding, as he had dreamt that I had blown far away and then crashed to the ground while he was watching! I have made a mental note never to volunteer, just in case this was a premonition of my demise.
So it got me wondering, does Joshua dream during these big 12 hour sleeps that he enjoys? Joshua sleeps so soundly that surely his mind, impaired though it is, must create images and stories for him at night He has never woken up screaming from a nightmare that I have known. While Joshua’s understanding of the world will be different to most, surely dreams are sub conscious. I would love to think that Joshua is able bodied in his dreams, that he can run freely and has no use for a wheelchair and that he is not hampered by seizures. In his dreams, Joshua might be able to move about with ease, make himself understood and eat hot chocolate fudge cake endlessly…
Perhaps Joshua enjoys his long sleeps, not just because he is an exhausted teenager, but because he enjoys real freedom in his dreams. Maybe in his dreams, he can experience life as a ‘normal’ boy and he has no limitations. Even if it is not true – and lets face it, I am never going to find out for sure – I find this a comforting idea and I will continue to allow him to lie in until midday, just on the off-chance.
It was a wet day here yesterday and so we went shopping in the afternoon. My husband had adjusted the brakes on Joshua’s wheelchair in the house in the morning and sadly I had forgotten to pack the footplates – or ‘legs’ as we call them. So it meant that poor Joshua had to exercise his muscles as we walked around, by holding his legs straight out in front of him as we toured the shops, to prevent them from dragging on the floor and he was surprisingly good at it.
We found quite a few stores that were inaccessible to him, which is unusual these days. When we stopped for a hot drink and a sandwich in a well known coffee shop chain, I had to move his wheelchair to let other wheelchair users get by as the aisle was too cramped. We followed my husband to an outdoors shop, and found that he was upstairs looking at walking shoes. The sales assistant asked if he could help us and I asked where his lift was to join him, but there was no means of getting a wheelchair upstairs so we waited downstairs.And finally we had afternoon tea in an independent cafe, in an old building, and Joshus had to vacate his wheelchair to walk inside up the steps – he is fortunate enough to be able to do that, many wheelchair users do not have that option, so they would be barred.
I thought that it was a legal requirement these days to make all public buildings accessible to wheelchair users but, our experiences yesterday suggest that this is not the case and I find it frustrating. Joshua should have the same rights as anyone else to go wherever he wants to and he should be able to move around as freely as able bodied consumers, with as little fuss as possible. Wheelchair users do not need to made to feel as though they are an inconvenience or a burden, but adaptations should be made to make stores accessible, even if it does mean giving up precious retail space to install a lift or ramps.A sign saying ‘disabled customers are not welcome’ would not be tolerated, but effectively that is what these shops are saying by not making their shops wheelchair-friendly. It is not good enough for us to restrict ourselves to the places where wheelchairs are catered for, we will continue to access all areas, to make a point as we go and to try to make staff realise how non-inclusive their facilities are.
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.