Mind the Gap

We had a rather nostalgic day yesterday as , for a change, we decided to take the train to a neighbouring seaside town rather than driving. I bought the rail tickets online and we set off for the station with our two dogs, feeling like we were on a big adventure. It was very sociable waiting on the platform as other dog owners all spoke to us and acknowledged and admired our elderly mongrel, Max. It was an old train of just two carriages when it arrived and I took the dogs on,  while my husband got the wheelchair onto the train. He stood with Joshua while I sat down with the dogs and watched the countryside flying by, seeing all the sights from a new angle and trying to work out where we were.

Judging from the use of wooden windows and the rickety rhythm of the train, I guessed that it was an old one, so as we disembarked, I asked the train guard for the train’s age and he thought that it was around 80 years old. This was exciting news to me as it meant that we had followed in my own footsteps as a girl, as well as those of both my father and grandfather, who used to arrive by train onto the island. This gave me a warm glow, even though Joshua was oblivious to this nostalgia. He was more interested in the cafe that we stopped in at the harbour, where we sat outside and he tucked into an orange juice. I had asked the waitress for some crisps as a snack to keep Joshua occupied and I laughed out loud when she offered me olives instead. Joshua settled for a piece of carrot cake which he quickly devoured.

We walked along the esplanade and the dogs played on the beach, where they were allowed access and Joshua enjoyed the long walk along the sea wall to the next town, where we enjoyed a pub lunch sitting outside. Today I had charged up my ipad so he happily sat and watched Shrek 2 while he waited for his bangers and mash, which he ignored when it arrived and he homed in on the shared fries that came with our sandwiches, so they were shared three-ways. Once the fries had all gone, he was happy to consume his own meal, which he enjoyed too. As the wasps took a liking to our sweet drinks and my cheese & pickle sandwich, I was again transported back to being a child and the busy wasps that plagued all of our meals outside. In fact it was here , on this holiday destination, that I was first painfully stung by a wasp, when I sat up from a lying position and trappped an unsuspecting on my tummy, so inevitably it took its revenge.

We walked back along the coast and lay on the rug on the beach where there was a quiet patch. Both ‘boys’ took up the full picnic rug so I threw the ball in the sea for the dogs , then bought some bottles of water, then found my own spot to lie down for a doze. Joshua woke up first and began to throw stones for Ruby to fetch back, both of them enjoyed the game. We walked back to the station to find out what time the return trains were. The guard jumped out of the train to lay a ramp down so that we could wheel Joshua onto the train, this was a modern invention for this old-fashioned train, I am not sure that such accessibility aids existed when these trains were newly running. My grandfather walked with two sticks all of the time that I knew him, and I am sure that he would have just struggled onto the train.

We enjoyed the view on the journey back, as the sun was still shining after 7pm when we travelled home. As we got out at the station, Joshua made his views clear , saying ” Back home!” He enjoys a trip out and this had been quite an adventure for us, but wherever he has been, there is nothing better for Joshua than to return to his familiar home, and the nearer we got, the more excited he appeared to get. Despite his enthusiasm for home, we all enjoyed our big day out.

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The Rough with the Smooth

I have written this week about how much more alert and cheeky Joshua has become, well sometimes that cheekiness spills over into naughty, so it is not all good. Yesterday our lively son was very hard work as we waited for our lunch to arrive at a cafe : he simply could not wait or sit still and unfortunately their service was very slow. He kept grabbing my sunglasses off my face – a trick which he finds hilarious, but when they are my only pair of prescription glasses and his fingernails have grown sharp, I do not share his sense of humour. Then he moved onto grabbing condiments off the table and throwing them and then he would not sit down; while waiting for our lunch to arrive I walked him around the adjacent park/crazy golf course four times, once with him pushing his own wheelchair and once more with me pushing him in his chair, until finally I saw the food arrive. Joshua was like a changed person once his fish and chips arrived, he sat quietly and fed himself, happily as he finally had what he wanted.

Whenever I am exasperated by Joshua’s more challenging behaviour and I describe him as being ‘naughty’, I have a friend who explains that he is just ‘communicating’ rather than being bad. I know that in this case it was true – but she is not always right!  He was clearly commincating that he could not wait for his meal to arrive and as we were sitting outside, overlooking a park, he was confused as to why we were sitting around looking at the park rather than playing in it. I often take my ipad with me for when only a Shrek distraction will do. He watched me take my ipad from my handbag, only to find that the battery was flat, so he wanted Shrek but was thwarted, making him crosser.

Although these behaviours are mild in comparison with those that some that Joshua’s peers at school exhibit, they did mean that our lunch out was not as relaxing or enjoyable as it might have been. But I do understand why he was behaving in this way – I was frustrated by the wait for my simple sandwich too – and I appreciate that we need to take the rough with the smooth, as there cannot just be positive outcomes from Joshua’s increased awareness and liveliness and we maybe need to learn to avoid busy restaurants in future, so as not to put ourselves in these situations whereever possible.

Help yourself

All of his life Joshua has relied upon others to realise when he might be hungry or thirsty and to provide him with food and drink, like a baby bird I say. It was as though he did not have the instinct to recognise hunger or thirst , let alone show the initiative to go to the fridge or cupboard to help himself.

But this is changing now, with our new more alert, engaged son : last night, as I was in the kitchen making his tea, Joshua came in to check on my progress. He looked around the room and was clearly dismayed that the mashed potato was still a way off, so he went to the fruit bowl and surveyed the available choices, then handed me a carefully selected satsuma. That doesn’t sound like much of an achievement  I am sure, but believe me, that is huge: it demonstrates to me that Joshua recognised his own hunger, worked out that his evening meal was not yet ready, found the fruit bowl and made a healthy choice then gave it to me, recognising that a satsuma needed to be peeled, rather than simply eaten whole. Each of those steps show cognitive ability that he has not shown previously, in the past I would pre-empt his hunger or thirst and supply the missing item, so that he did not need to think about it.

Joshua has never been a good drinker, apart from when he was pre-school age when he would drink copious amounts of apple juice and say ” put some more in” when he wanted a top-up. But since he started at school and since his epilepsy took hold, Joshua had to be encouraged gently to drink – you could not be too heavy-handed as then he would ignore the drink being pushed on him. Even now it is better to leave a drink lying around for him to find or allow him to think that he is stealing someone else’s, if you want him to drink. But these days Joshua will indicate that he is thirsty by grabbing a bottle – it might be a bottle of beer or tomato ketchup even – and holding it up to his lips. That too is a clever ,and effective, way to ask for a drink and we always take the hint now.

These are both examples of how Joshua is changing, learning and developing all of the time, even now that he is 17. As he gets older, I guess that he is more aware of what he  needs and now he is finding the communication tools to ensure that he gets what he wants. Keep it up Joshua!

Hope springs eternal

Joshua was diagnosed with severe brain-damage when he was just four days old and so we have always known his diagnosis. What we did not know, neither did the Doctors, was how his ‘devastating brain damage’ would impact upon him. This news was delivered to me on my own, as the Doctor was about to deal with an emergency, so she had no time to wait for my husband to be there too, even though he was already en route. Now I reflect on that, whether we heard that catastrophic news on day 4 or 5 of his life did not really matter, what mattered was how the news was delivered and that we were given the right support to receive the blow. As it was, I did not really take the diagnosis in properly, I was in shock. A lovely young nurse called Katie – I will never forget her and will always be grateful for her care of both myself and baby Joshua – called my husband and told him to  come into Special Care as soon as he could, as I needed him.

When he arrived, with my parents, I could not really tell him what I had been told as it was all blurred, and again , Katie stepped in and arranged for another Doctor to read his notes and deliver the diagnosis again. This time we were together and this time we had time to ask questions, although we did not like the answers we were given. The second Doctor had all the time in the world for us and confirmed that a large proportion of Joshua’s brain – 70% on left hand side and 30% on right hand side – was damaged. My husband was more practical and rational and he asked what exactly damaged meant and could  it improve? The blunt answer came back ‘no, its dead’. We asked what the impact of such brain damage, caused by a stroke, might be and were told that it was uncertain but that he might not walk, talk, see or hear. He advised that we take Joshua home and treat him like a ‘normal baby’ when the time was right, in another week’s time.

Now I can remember that day as if it was yesterday and I will never forget the room we were in or the feelings that flooded my brain. We both stayed up all night, talking, crying and gazing at our very poorly baby in his incubator. I have two things to suggest about how that experience could have been improved for us at that time, even though nothing would take away the pain of the diagnosis:

  1. On the fifth day of Joshua’s life – or at least in the first 11 days before we left Special Care-  a social worker should have appeared and introduced themselves to us. They could have told us a little about the world of disability that we were about to enter. They could have left us with some reading material about benefits and where to access support, that we could have read when we were ready. That would have helped us to feel less alone and that this was a journey that other families had been on and had survived. I am not saying that we would have taken any of it in at that time, but then at least we would know where to turn when we were ready. Instead I had to self-refer for a social worker many years later, when Joshua was 8 or 9 years old!
  2. I would have found it helpful to have met someone like myself now. There, of course, are no guarantees but if as new, frightened parents we could have been visited by someone like me now, with a 17 year old son with the same diagnosis , it might have given us hope. The doctors do not deal in hope, they have to deal in facts, and probably the bleakest outcome too, so that they cannot be accused of giving false hope. But if I had met smiling, cheeky Joshua – yes wearing splints, attending a special school and wearing an epilepsy helmet – then I might have been able to visualise our future better. I could have seen that Joshua had not been given a death sentence but that quality of life could be achieved – not the life that we had planned for him, but Joshua does everything in his own unique way.

In a way, this is what I hope to achieve through this blog. I cannot visit new parents struggling in hospital, but I would like to think that reading about the fun that Joshua has, in amongst the struggles that he faces on a regular basis as it is a warts and all account, might give someone some hope, someone who needs it right now. As a new mum of a 4 day old brain-damaged baby, I could not begin to imagine that Joshua could laugh, show affection, would have a wicked sense of humour, would have a love of music and would make his presence and wants felt as well as he does. To read about Joshua’s antics now, might just have been the tonic that I needed back in March 2001.

Man’s Best Friend

It was a beatiful, warm morning first thing yesterday as it was time for my sister to return home so I drove her to the ferry terminal. Joshua was awake at 6.40 , it appeared that he was up mainly to say good bye to his Aunt, as he retired back to bed when we left and was still fast asleep when I returned 2 hours later. The morning sunshine was glorious and it turned out that was the best of the weather for us yesterday.

Other than that fond farewell first thing, we had a quiet day yesterday, spent mostly inside the cottage, just chilling and quite a lot of dozing too. It rained most of the day and so it was perfect to hunker down and stay dry, eating both lunch and tea at home. But the sun came out and the rain dried up towards the end of the afternoon and so we ventured out on a cliff path walk, with our two dogs and with Joshua in his wheelchair. Everywhere felt fresher after the rains and it was good to get some sea air in our lungs, to clear stuffy heads.

We had a ball tucked in the wheelchir pocket so when we arrived at an open stretch of grass, my husband began to throw the ball for Ruby, our 7 year old cocker spaniel and she enthsiastically chased after and retireved it. Joshua watched and enjoyed the game for a couple of throws, but he is no longer willing to just be a spectator! He stamped on his wheelchair footplates to gain attention, then he held out his hand for the ball. – there was no doubt what he wanted. Thereafter the game was his and he took turns at good overarm throws of the ball, sending a panting Ruby  running backwards and forwards around the park. Joshua delighted in this game and neither of them got bored of it, so long as I got the ball off Ruby then tossed it to Joshua. They were very companionable and both were very focussed on the game.

I know that therapy dogs exist and dogs that are trained to alert their owners to seizure activity or diabetic shock, but although Ruby has none of the speciliased training, she is very in tune with Joshua and his needs and they look out for each other in a sweet way. My husband was trying to brush Ruby later, an activity that she hates,and so she sought refuge on Joshua’s knee – it seemed that he was ‘den!’. I love the relationship that they have developed: she is my shadow and is always watching to see where I am, but she is also very caring towards Joshua and they clearly have a mutual love for each other and we would not be without her.

Divine Intervention

We had yet another night out last night for the last night of the week long regatta and the town was heaving with people. As we arrived, it began to rain and so we took umbrellas from the car and soon it was torrential and we were trying to juggle a wheelchair and two umbrellas – aiming to keep us all dry. But when my husband held it over Joshua’s legs, to prevent his trousers from getting soaked, it meant that the umbrella dripped down my back. So then I pushed the wheelchair with one hand and held the umbrella with the other, sheltering us both from the rain, but having to crouch down low and struggling to steer the chair. There might be a design challenge there?!

Joshua and I were both damp by the time we got to the town centre – we had not packed coats on holiday , as it was so scorching when we were packing from home – and of course, damp soon begins to feel cold and we were heading for an evening outside. So we stopped at one of the open shops to look at buying coats, but sadly they did not have any cheap coats in either of our sizes. While we were in the shop, the heavens opened and rain bucketed down and gushed down the street, so we made the most of the shelter, only moving on when it had calmed down to a gentle drizzle again.

We got ourselves in position in the harbour, ready to enjoy a display from The Red Arrows, as they weresoon due. As we waited, the sun came out, a rainbow apeared and the black skies cleared, to be replaced with bright blue skies. At 7.30 pm precisely, The Red Arrows tore across the sky in their incredible, unique style, trailing red, white and blue smoke in the clear sky. There was not even a hint of the torrential weather that had just been endured, it was all timed to perfection. We wondered at the beautiful clear blue sky, with the wet ground with large puddles and the drenched audience, as the sky certainly had a celestial appearance.

Joshua was not watching the sky all of the time, as there were periods when the jets disappeared to line up for their next stunt and he would lose interest then, but he enjoyed some of The Red Arrows and he kept pointing at the sky. In the end , the conditions could not have been better and we all thoroughly enjoyed the display.

There were closing fireworks at 9.30pm but I am not a great fan of the noise and I soon get bored after some initial ‘ooohs’ and ‘aaahhs’. Although it was a really impressive firework display, my heart was really lost to The amazing Red Arrows.

Fruits of my Labour

While I am on holiday and not at work, caring for  Joshua full time ,as he is not at school during the day, it gives me some insight into how life might look if I was not a working mother. I went back to work on a part time basis, three days a week, when Joshua was 6 months old and even back then , I had already worked for my employer for 11 years. When he went to school, I increased my hours to work four days a week and to take Fridays off and 12 years later, I have maintained these working hours. My fridays are very precious to me as they are days when I get to do what I want to do, without having to consult anyone : they are when I fit in my haircuts, when I arrange to see friends and family, when I make my chasing phone calls to the Council or NHS, when I can commit to my monthly parent coffee morning at school and when I can spend some time with my husband, without having Joshua around. If I do not do these things on a Friday, I tend to fit them into our precious respite weekends.

On reflection, Friday is probably the only day of the week when I can do normal things and it is the only day of the week when I can actually put myself first, so it is no wonder that I am loathe to give it up!

Juggling work, albeit part-time, and raising a child with special needs is not an easy balancing act to achieve. In addition to the normal challenges that working parents face, such as organising childcare when their child is ill or covering the long and frequent school holidays, there are other considerations when parenting a child with additional needs:

  • Joshua has multiple health appointments and has even had extended stays in hospital in his life – an unplanned emergency admission in 2010, his brain surgery in 2014, botox and subsequent phsyiotherapy sessions are the longest commitments that I can recall.While my employer would release and pay me for my own health appointments and crises,covered by their sickness policy, I have to make the time up or pay it back for Joshua’s appointments
  • There have been frequent emergency calls from school over the years, that Joshua needs to come home as he has had his emergency medication or to meet the ambulance at A&E as he has had seizures and fallen and cracked his head open. In those instances I just drop everything and drive the 30 minutes to school or 40 minutes to A&E and have never once asked permission to leave.
  • During school holidays ,or if I have needed to work away, organising childcare has been challenging. I now have 25 days holiday a year, which has to be used carefully as it is not enough to cover the long summer holiday, let alone the two weeks at Christmas and Easter and the three half term holidays. We are fortunate to receive direct payments, which enable me to pay Yorkshire Grandma for after school childcare and for some days in the schol holidays. However at an allocation of 6 hours a week during termtime and 10 hours /week in the holidays, it does not stretch to all of the childcare that we need.
  • Given Joshua’s special needs and his epilepsy in particular, it is not a simple matter of paying a local teenager to babysit for us. Whoever we entrust him to, has to be trained in administering Midazolam in emergencies and how to handle seizures. They have to have eyes in the back of their head as he cannot be left unsupervised at all, so that is a demanding requirement and I would only trust certain people to take care of our most precious son.

All of that being said, I get more than just my salary from working : I get an identity of my own, where I am not just regarded as ‘Joshua’s mum’.  I get a distraction from caring, when I get to be normal and I become preoccupied with issues other than disability. I get a sense of achievement, as I am good at my job, and I get thanked and praised by my clients, which boosts my self-esteem.

I am fortunate to work for a small, family-run firm and as I have worked there for 28 years, I have grown up with them. They supported me when Joshua was born, with all of his complications. I always say that I would not have been able to have kept working as Joshua was growing up, if I had had a “proper job”, where you cannot easily cast your work aside when that emergency call comes in.

Joshua has two more years of sixth form left and once he leaves school, then a new chapter in all of our lives will begin. But for now I am grateful that I have been able to work throughout his childhood and school days, even though it has not always been easy.