And now, the end is near….

So today is the last day of our October half term holiday and tomorrow it is back to work and school. As I reflect back on the week we have spent together I see that :

  • We definitely made the right decision to go away nearer home and we have enjoyed our holiday in the countryside rather than at the coast. It is always hard to return home after a week away, but I am relieved to be facing a 2.5 hour drive home , rather than 7 hours in the car.
  • Despite some illness, we have enjoyed our stay and have got out and about everyday but one. I am sure that Joshua has recovered faster as a result of that day of quarantine. We have often had to separate in order to enjoy the things that we wanted to do, if it did not suit Joshua. For instance, we had planned to attend a local bonfire last night, but it was cold and raining and Joshua was contented at home, so my husband went to watch the fireworks without us and brought back some great photgraphs. Most days on the way home from an outing, one or other of us have taken the dogs on a walk at dusk. Although this is far from ideal, it is often simpler than involving a reluctant Joshua ,who is such a home-bird and would react badly to a detour.
  • Joshua’s new off-road wheelchair/trike was a good buy, as it came into its own on the walks that we took together this week. Joshua has looked super-comfortable and it has been much easier to push through grass and mud than his standard wheelchair ever would have been. I even pushed him up hill on yesterday’s river walk, just to see if I could manage it, and while I had to stop halfway for a rest, I did make it and without too much huffing and puffing!
  • I have been more aware of Joshua using bad behaviour to communicate when he is not enjoying an activity: he behaved appallingly in a walkng shop, throwing merchandise across the store, and he got what he wanted, I hurried up with my hat decision and we left quickly. It was clearly a protest against shopping as he was an angel in the pub, immediately afterwards, while waiting for lunch  smiling, hugging and sitting quietly. When he is impatient in the wheelchair, he has developed a stamp on the footplates, to indicate ‘hurry up lets get going’ which is also pretty effective
  • Joshua knows what he does and does not want to eat and if he is not in the mood for a particular dish, even if it is one of his favourites, then he will not entertain it. On two evenings, I offered him fish dishes that ordinarily he would enjoy , but he simply spat them both out and went upsatairs to his bedroom. On the first occasion, as he had eaten a decent lunch, I let it go and simply offered him weetabix for supper which he enjoyed. But on the other day, he had not really eaten much all day and we had been late offering him his evening meal. So when he rejected his fish, I relented and quickly offered him beans on toast instead and he ate that with real relish, showing that he was actually hungry, just did not approve of my first menu.
  • Our puppy Kevin is a key member of the family already and nothing made that more apparent than when he went missing yesterday and my husband and I searched anxiously for him. We had come to the conclusion that he must have got spooked and run away or had been stolen, when he peeped out, totally unaware of the search-party, from under a bed, where he had been fast asleep.

I will be sad to go back home later today and I will miss being with all of my family this week, after being in each others’ pockets, but I know that if we were together all  of the time, then this half term holiday would not be as special as it was.

Advertisements

The Passage of Time

Today is the last day of school before the October half term holiday for us and it will be the only day this week that Joshua makes it into school, as he had a day at home with Yorkshire Grandma yesterday. I am all set for my parents coffee morning so we will both be in school today and if he is not well enough with his cold, I can bring him home again afterwards. Then I have packing to do as we are heading away on holiday on Saturday and I feel very ready for this break. I love on holiday to be free of plans and schedules, to just get up and out when we are ready and to spend the day how we choose. Last weekend was so precision planned, apart from the unfortunate ending, that it will be a relief to be simply spontaneous.

I know when we get back at the start of Novemeber, we will be on the countdown to Christmas as it always sneaks up on me then – we go away and its the end of summer and we come back, the dark nights have snuck in and everyone is talking about festivities. But I am looking forward to a week away with my two boys, to having more opportunities to use our off-road wheelchair  and to our puppy , Kevin’s, first beach experiences, so its all exciting stuff.

But to look forward to October Half term, is to wish the end of the year for me as we hurtle towards Christmas next, after Halloween and  Bonfire Night. I must be getting old as Last Christmas doesn’t seem long enough ago, we have not long packed away the outsde lights surely?

I am not sure how , and if, Joshua marks the passing of time : I know that if you say someone is coming in the future, Joshua will look over his shoulder for them as he thinks that they are coming right now! We do not warn him about future events too far in advance, as he expects it to happen at the time, so it is only when I begin packing his respite bag do I mention to him where he is going the next day. I know that many people with autism cannot handle changes in routine, and so they need to be gently prepared for events like Christmas or holidays, but Joshua is not like that. Life for Joshua is about the ‘here and now’ and he seems unable to understand too far ahead. So, as I got the suitcase out last night and piled some clean clothes onto the spare bed, I explained to him where,when and who was going on holiday soon. I am not sure if he really took the news in and if suitcases mean family holiday to him – he was more interested in taking a bath and in throwing his books on his bedrrom floor as I gathered up clothes.

Not looking forward allows him not to have the worry of frightening future events, like surgery for instance, but it also means that he does not look forward to anything with excitement, like I used to count the days down to my birthday when I was a girl. Of all the things that Joshua’s stroke has deprived him of, looking forward to things in the future  is the least of his worries.

“Back Home”

Joshua was such a good lad yesterday throughout what must have been avery dull day for him, as mostly we were either packing and tidying up or else we were travelling, yet he was well behaved throughout both processes. He watced his films on my ipad much of the morning, with the occasional contribution of hoovering up. We were all rewarded for our hard work with a delicious lunch, sitting outside a cafe on the beach. Joshua tyically devoured his scampi and chips, followed by hot chocolate fudge cake with vanilla ice-cream. Then it was back to the house for the final touches to the packing and cleaning.

We left our holiday home at 6pm, as planned, and caught a ferry across the solent back to the mainland and away from our holiday isle. As we sat down on the ferry, Joshua was excited and said “boat!” and kept waving at other vessels through the window and at other passengers too. It was as though he knew that this would be the highlight of a long trek home. He enjoyed the short sail then settled back into the front passenger seat, with me seated behind him.

My husband drove for several hours before we stopped at a fast food restaurant for some refreshments and a break. As soon as he saw the golden arches he was beside himself with joy, shouting “Donalds, Donalds” at the top of his voice. There was a long queue and he delighted the fellow customers with his enthusaism – one nurse who was on her way home after a long shift, told him that she agreed, it was the highlight of her day too. Although he insisted on flashing his bare tummy in the queue, Joshua certainly lifted the mood in that queue and Ronald McDonald could have paid Joshua commission for his enthusiastic endorsement of  his Happy Meals.

Once he was full, he was happy to settle back into the front seat of the car and continue the long haul home. We were thwarted by roadworks at 11pm when four lanes of traffic had to reduce down to one, so we were stationery, and frustrated, for some time. We had travelled late at night to avoid this congestion! At Around 1.30am, a tired Joshua had assessed the situation and asked for “jamas” and “bed”, as if we were in any doubt what he wanted. We approached our home-town at 2am and Joshua recognised the route, shouting “back home” at the top of his voice, with relief. He would not stay in the car while we unpacked it, he climbed out himself and ran into the house, he clearly felt that he had been patient enough!

He grinned to be home and out of the car, and we went straight upstairs to his bedroom and into his longed for “jamas” and “bed”. There was no fuss, he was fast asleep immediately and I am expecting a lie in this morning too. We are so lucky to have such an easy traveller, as that long journey would be made so much worse if he had been agitated or even asking ‘are we nearly there yet?’ Instead he understands it is the price we pay for such a fabulous holiday and he settles down and listens to the loud music that played throughout the journey, rarely even closing his eyes. So thank you Joshua, you are a real star!

And now the End is near…..

It is time to pack up today after two fabulous weeks on holiday  together. I have told Joshua that we are leaving and he has seen the suitcases come out again, but who knows if he really understands. He has been coming here, to this holiday home, all of his life, from being a small baby, and so it is entirely familiar to him and he knows which is his bedroom as soon as we arrive – although in the wee small hours, several times this holiday he has swapped his bed for mine! I have written about Joshua being a home-bird before and he feels so comfortable here that when we have been out on a trip and we approach the right road, he begins to jig in his seat and say ” back home!” so I know that this is a home from home for him.

But Joshua has the best outlook on life : he lives for the moment and while he is happy to be here, he will be super-excited late tonight when we get home again. So long as he is fed, entertained, not too hot and cuddled frequently, Joshua is contented wherever he is, so he is happy with the basics and anything more is a bonus. I predict that on Sunday morning, when he wakes up in his own bed, he will leap out and will peruse the house to check that everything is still in its place, where he left it and wil ask for ‘The Show’ DVD as we did not bring it with us and he has asked for ‘Robbie’ several times while here.

Joshua still has another two weeks or so off , so going home does not mean going back to his usual school routine quite yet. Whereas I will be back at work on Monday morning and that represents a big change for me: Having been with Joshua and his Dad 24/7 for the last fortnight, except for the two hours when my sister took charge of Joshua while we went for a wet bike ride together and apart from the sunrise walks that I enjoy with Ruby, while both boys are still fast asleep! I always find that I miss him during the day when we come home, that to see him awake for three hours when I get home from work, before he goes to bed does not seem sufficient, but that is our normal weekday routine. I should not be too sad as we have had a great time and we have another August bank holiday coming up, so that will be a short week and that tends to mark the end of the Summer holidays, when that autumn chill can arise in the evening.

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.