Under Par

I am very fortunate that during Joshua’s lifetime, I have not been ill very often. There have only been an handful of occasions when I have had to take to my bed and leave the caring to somebody else and they have been with bad colds and stomach upsets only. We have had many hospital stays but Joshua has always been the patient, not me, thankfully as I am not sure how he would react to me in a hospital bed.

However I became ill last night: I developed stomach pains during the evening and at 10 pm Joshua was up out of bed, having had a seizure. I caught him on the landing and we sat on the top of the stairs for a while, before my husband helped him up and we both snuggled into his bed as I wanted to be sure that there were no more seizures on the way. I must have nodded off but when I woke up, I felt nauseous. I went downstairs to find an indigestion remedy then went back to my own bed, with a bucket beside me. I woke suddenly at 3.30 and had enough notice to get to the bathroom where I was sick and I returned there virtually every hour. I felt awful and knew that I was not going to work as planned.

We had already arranged for Yorkshire Grandma to come for Joshua at 8.30 so I hoped that he would stay in bed asleep until she arrived but he appeared at my bedside at 8.20. I was certain that I could cope with him for just ten minutes and knew that she would already be on her way. So we both gingerly came downstairs and  I prepared his weetabix and medication and set him up watching a DVD. We sat together in den and I gave him his cereal but he recognised that I was not my usual lively self in the morning, so I got a few smacks. We were both relieved when Yorkshire Grandma arrived and took over and I sloped back to bed where I slept until midday.

Caring for Joshua is a demanding, full time job and so I need to be feeling 100% to be able to be quick enough for him. I am hoping that my stomach upset is in response to something that I have eaten, rather than an infection, as I do not want Joshua to feel this way . Although I know he loves me, he is not tolerant of me being ill and rather than leaving me in peace to recover, he will pester me trying to understand what is going on and in his own way, trying to cheer me up. Lets hope this is a short burst and that I feel more human later but in the meantime, once again, thank you to Yorkshire Grandma for entertaining our son today.

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Keeping it Real

I read a blog that I follow yesterday ,that is written by the mother of an autistic young girl and she wrote about ‘keeping it real’ yesterday. Normally she has a positive outlook on her life and her daughter, as I try to do, but she shared her fears yesterday and the negatives of their family life as a result of autism, which got me thinking too. I try to be honest in my writing, to share events and reflections as I see them but usually, due to both my optimistic outlook and through fierce loyalty to Joshua, I will focus more on the positives in a day, and gloss over the negatives. For the sake of balance, I want to highlight some of the negatives from our  recent family holiday too.

Joshua’s abilities and preferences dominate what we can do on holiday: the fact that he wants to be tucked up in bed around 9 pm, would curtail any nights out. We watched live music one night but we left after the first band finished playing, even though there was another coming on next, as Joshua could not tolerate any more. On our last night, I had planned that we would take a final walk down to the pier amusements and grab a drink while we were there, but seizure activity put a stop to that plan. Most evenings we were both at home watching television : my husband went to the local sauna a few times, while I bathed Joshua and got him to bed. Many people will think that is simply what parents do ,but usually by the time your son is 18, they are independent and so you can re-gain  some of your social life as a couple.  It is not that we want to be out partying all of the time, but to have the option, once in a while, would be nice. But that is what our respite weekends are partly for and I am already looking at a short break next month, just us two, when we will have more freedom to please ourselves.

As a couple we often operate like a solo relay race: I relished my cliff walks early every morning while Joshua was still asleep as  some special time to myself. But once he is awake, if we needed something from the shops, it was usually simpler for one of us to go alone , while the other took care of Joshua, than having a family outing to the supermarket. We made two visits to the launderette during our holiday and we were like a tag team : I put the dirty washing in the machines, then came home, then my husband would remove the clean, wet washing and place it in a drier and come home. Finally I would collect the dry clothes. It was a precision -timed, military maneouvre!

I have arrived home with bruises that Joshua has inflicted on me: I have a dark bruise on my upper arm from when he reached through to me in the front seat of the car and pinched my skin really hard. My shins are sore from the kicks that they have endured. Joshua is getting stronger and bigger, so what might feel like playful taps to him, are hurting me. I am not sure why I am the target, as he does not pinch or kick his Dad. I know that he loves me, as I receive many more hugs than I do kicks, but I do worry about how that behaviour could escalate as he gets bigger and stronger, while I get older and weaker.  There were a few occasions when he kicked strangers too and of course that upsets me more than when he targets me. I tend to excuse him, claiming it is not aggressive, but it is definitely targeted and deliberate, and if it is his game, it is not one that I want to encourage and I need to seek advice on how to dissuade him.

So that is enough about the downsides of holidaying with Joshua as he is, it was a great family holiday, with many more positives than negatives, and there are no two men that I would rather have gone away with.back beach

Home Again

Joshua behaved really well yesterday, on what must have been a pretty dull day for him. He watched his Bruce Springsteen DVD most of the morning while we packed and tidied up and he even tried to join in with some hoovering. He was delighted when at 1 pm we were finally ready to get in the car, so he cannot have realised that a long journey lay ahead, or he might have been less keen. Joshua loves the ferry and was very excited to find a seat on deck, where he spent most of the crossing waving at fellow passengers and tucking into his 8th meal of scampi and chips of the holiday – that is his new favourite dish.

Both Joshua and I dozed on the first leg of the journey back on the mainland, so the time flew for us as we were chauffeur -driven. Only after several hours, did Joshua indicate that he was bored in the back by starting to hit the back of my headrest and kicking my seat, so I provided Shrek on the iPad and he settled down again to enjoy the film. With less than two hours until home, we stopped at Donalds for a break and something to eat. As we were parking Joshua was shouting “thank you” in excitement and he ate all of his burger and drank most of his juice. Full and refreshed, he was happy enough to return to the back of the car and continue the journey home, where we finally arrived at 9 pm – eight hours after we left.

Joshua was delighted to get home and spent some time admiring himself in the hall mirror, maybe checking out his suntan and freckles, while we unloaded the car and got the first wash on. Then it was time for a bath which he enjoyed and into his own bed. Joshua has always loved coming home and Yorkshire Grandma cannot wait to see him this morning, as I head back to work. I always struggle after a family holiday together as I have become accustomed to spending time with Joshua 24/7 and so I miss him and always feel as though I am missing out on the school holidays. But it will soon be the August Bank holiday weekend , so I cannot be too greedy and we have enjoyed over two weeks away together. Before we know it, we will be in September and his final year at school will be on the horizon, so I am not in any hurry to wish the next two weeks away.

Day 15 of Holidays

So our last day of the holiday has finally arrived and it is time to face the pack up, clean up and long drive home – it always seems further away on the way back than it did when we excitedly drove down here.This will certainly be the holiday that I remember for Joshua walking everywhere and for him making the most of the amusements on the pier. We planned to make  a return visit there last night after his tea, but Joshua’s seizures got in the way of that plan and so it was a quiet night in with a bath and takeaway instead to round off our holiday.

We certainly made the most of our bonus extra day as we attended the annual Garlic Festival, which I had never seen before so expected it to be a small event with food and garlic stalls that we would cover in around an hour. But it was a large, fun event that occupied us all afternoon until 5.30. As soon as we arrived at midday, Joshua identified his favourite food vendor that he has enjoyed at other island events, Whitby scampi and chips and he pointed it out to me! So we set out the picnic rug in front of the music stage and my husband bought him a box of his current favourite food, which he enjoyed. Then he and I sat listening to a great ska band, while my husband explored the stalls and exhibits, bringing me a cup of tea and a lemon crepe to sustain me.

Gradually the sun came out from behind the threatening grey clouds and after Joshua had a doze, we went to explore the festival and enjoyed the variety that we found. Joshua sat down on a bench watching a circus school/children’s entertainment company where they were teaching young children to juggle, tight-rope walk, hula-hoop, balance and ride on a unicycle. It was a very busy, fun place and the ringmaster spotted Joshua watching and she told him that it was boring to watch and he should get involved! So a man brought him some juggling balls and I explained that he only had one working hand, so that might be challenging for him. Kindly he threw juggling balls for him to catch and Joshua threw them back at him and they had a sweet game together that made him giggle. I had a go with a hula-hoop and lassoed Joshua with one. The circus company go to areas of need apparently, all over the world, wherever there is  a need for children to have fun and to be reminded about how to be children, which is a worthy cause, and they were very talented at getting children involved certainly and offering them encouragement. We spent well over half an hour with them, then caught some of the dog agility performance on the way back to the rug . All three of us found something that we liked at this festival, and the weather forecast seemed to have scared some people off too as it was not too crowded. It was certainly worth staying another day to include it on our itinerary.

But later, it will be time to say our goodbyes and hope that Joshua copes with the long drive back. We cannot be too sad to leave as we have been lucky enough to enjoy 15 days here and , in two months time, we will be back for October half term!

Day 14 of Holidays

Unbelievably we arrived here for our family holiday, two weeks ago : it has passed quickly but also, it feels as though we have been here for a good, long stay. I always struggle to leave and so I usually buy a flexible ferry ticket, to give myself scope to delay our return home. This holiday was no exception and I have changed our ferry to another 24 hours later. I know that it will make the return to work on Monday morning tougher, as we will not get home until late on Sunday night, but right now, it feels as though we have been blessed with the gift of time, by adding an extra night onto our stay! It is a classic case of my heart ruling my head, once again. Joshua does not have to get up for school on Monday, as he still has another fortnight off, and my husband has booked Monday off work too, so it will only be me having to rush around on Monday morning.

It was another very wet day yesterday and so we were glad that we had enjoyed our beach day the day before. I baked a cake in the morning and we took it round to my Aunt and Uncle, as we hardly got a chance to chat at their golden party last weekend. Joshua made himself at home in their house again, and we were able to chat best when he was dozing on the settee in their lounge. The puppies had a run around their garden, showing the chaos that we enjoy in our household on a daily basis.

From there we went to Cowes, where it was the last day of Cowes Week, finished off with a display from the Typhoon aircraft and fireworks later. But the town was awash with rain and cloud, spoiling all of the carnival atmosphere and it was uncharacteristically empty too, as the weather kept the usual crowds away. We parked at the opposite end of the prom from the activities and Joshua walked into town with us, we were all drenched by the time we reached a bar for a tasty lunch. We were all happy to shelter and Joshua was delighted to sit down and enjoy more scampi and chips! After lunch, we continued through the town , window shopping . The only shop that I dipped into was White Stuff to look in their sale and conveniently, they had a leather bench near the door, where Joshua could rest his weary legs. He sat beautifully while I browsed and my husband decided to walk back to collect the car rather than expecting Joshua to retrace his very wet steps.

Joshua refused to leave the store and head back out into the rain and we had a lovely chat with  a sales assistant, who invited us to shelter there until our lift arrived, even though I had only purchased a pair of socks! It soon became clear that she had experience of dealing with young people with special needs as she perched on the stool next to him and let him tug her ponytail. After asking him lots of questions about his holiday and school, she declared that she took care of an autistic young man in the holidays and worked at a special school on the island, which perfectly explained her ease with Joshua. After about 15 minutes, she helped me get him out of the door and we walked a short way to the pre-arranged meeting point , where we could sit under shelter. While we were still waiting, the same sales assistant passed us and grinned, Joshua recognised her and gave her a smile and a wave, which was really special, but she had made  a real effort to make a connection with him and it had worked.

The most excited that we saw Joshua all day yesterday, was when we pulled into the drive arriving back at the cottage – he is such a home bird – and particularly when it is wet, he immediately got his boots off and snuggled up on the settee with a smile on his face – ‘Back home!’.

Day 13 of Holidays

If things had been different with Joshua, if he had not suffered from brain damage at birth, we would have to have traveled home to collect his A Level results yesterday. It would have marked the next stage of his life and a major landmark in his independence as he would have hopefully have got the grades necessary to go to his university of choice. His peers that I saw on Facebook achieved their goals and will be off to University in the autumn. I know that this path is nobody’s by right, that everyone puts in hard work and determination to get there, but Joshua was deprived of that essential brain power to even have the choice, which makes me sad on his behalf.

So instead of celebrating with Joshua, I  reflect back on my A level results day 34 years ago!! In those days, you were not sent your results electronically, we had to go into school to have a brown envelope passed to us and so you received the news in front of your teachers and peers. I needed three Bs to get onto my course of choice at my preferred university, which seemed like a tall order at the time. Thankfully I exceeded those grades and all was well, I then spent all summer 1985 panicking about leaving home and my family. and being over 3 hours drive away. Of course I settled in well and I loved my time at university, which is why I feel that Joshua is missing out. I wish all of Joshua’s peers well for the start of their adventure and hope that all of their dreams come true.

That is a sadness that I feel on his behalf , but Joshua himself is, thankfully, oblivious to what yesterday could have meant for him. So long as Joshua has chips, cuddles and music it seems, his life is complete at the moment. It was a sunny day, the forecasters threaten that it will be our last one of our holiday, so we made the most of it on the beach and prom most of the day. We walked along the prom towards the parts of the beach where the dogs could play, until Joshua insisted that we stop at a cafe for a sit down and admired the sea view. The tide was in when we reached the ‘dog beach section’ so we three sat on the sea wall, with our legs dangling, while the dogs played on the wet sand. My husband went for a swim in the sea and took the dogs out with him and then he bought a tennis ball which Joshua enjoyed throwing for them to fetch. Joshua and I lay on the rug once enough sand revealed itself, once the tide started to retreat, so we were there for some time. Eventually we packed our stuff up and we walked back along the prom to another cafe for a late lunch, where we sat outside, right next to the beach. We had delicious food and then headed back to the house, up the steep hill once more, which Joshua  takes in his stride these days. We are very fortunate to have had a lovely beach day, it is important to take advantage of all opportunities that come our way, whatever they might be.

Day 12 of Holidays

It was very wet all day yesterday so we had to adapt our plans and it turned out to be , so it seemed, one of Joshua’s favourite days of the holidays. Firstly we were not rushing him out in the morning, he was able to spend some time at home watching his music DVD and enjoying a leisurely bath. We decided to go to the nearest big town to see Lion King at the cinema, and my husband and I walked the dogs in the rain en route, but Joshua waited , in the dry, in the car, where we could see him. It seemed that everyone else on the island had had the same cinema idea as the traffic was crazy and we queued much of the way into the town. Rather than the Donalds lunch that we had planned, we diverted to Pizza Express, where I had some vouchers to use to pay for our lunch. Just as we parked the car, Joshua had seizures and suddenly looked very pale and with bloodshot eyes. We expected that to spoil his fun, but fortunately he did not require rescue medication and he made a good recovery, though it left him rather wobbly for a while.

He was able to walk the short distance to the restaurant in the rain and he seemed pleased to be there, even though he became sleepy. But when the food came, he perked up and enjoyed his share of dough balls and then all of his lasagne.  We then walked down the hill to the cinema, which was heaving as everyone had clearly had the same idea. We had not pre-booked seats for Lion King and so it was full and they could only offer me single seats dotted around the theatre by the time our turn came. I did not think that Joshua could or should sit between strangers – although the possibility did amuse me – so we diverted to an alternative children’s film, Play Mobil,for me and Joshua while his Dad escaped to see an 18 film. In the warm, dark theatre, both Joshua and I nodded off during the advertisements and missed the start of the film. But once we woke refreshed, Joshua sat beautifully enjoying the cinema experience: I don’t think that he was following the plot -such as it was! – but he enjoyed the large, colourful screen and the comfortable front row seats. In fact he stayed sitting still right through the final credits.

We had a short wait for my husband’s longer film to end and when he appeared, Joshua gave him a big hug to show him how he had missed him. The heavy rain had turned into light drizzle as we walked back up the hill to take Joshua to Donalds for his tea, just to round his fun day off before we drove home again. While the dry, sunny days are easier to fill on holiday, Joshua seemed happy with his wet day entertainment and he still has Lion King to look forward to!