Bon Voyage

The time has come to pack up and travel back home, our half term week away is over already. Usually we stay away until the very last minute, travelling on Sunday and meaning that the return to school and work comes as a shock on Monday morning, when bags are still not unpacked. But this time , we are being sensible as we catch the ferry back this afternoon, which will get us home for bedtime and give us all day Sunday to get out of holiday mode and prepare ourselves. Thankfully, Joshua has kept to the same sleeping pattern mainly, so he has been in bed around 9pm all holiday and waking up between 7 and 8 am; this means that his bedtime routine is still in tact for school. In the past he has enjoyed late lie ins and stayed up later, so that re-adjusting to standard commuting times has been a struggle.

We have had no more kicking episodes since earlier in the week, but we have not dared take him to another supermarket since. So Tesco tomorrow will be an interesting trial. We met my Aunt and Uncle for a pub lunch yesterday and he behaved beautifully there, food seems to calm him down. We met in a lovely country pub and we sat around a large dining table, with Joshua and I wedged in on a bench seat so he was trapped. He waved happily at the staff, other customers and my relatives when they arrived. He watched his iPad movies intently, as though he had never seen them before and he drank his fresh orange juice while he waited patiently for his lasagne lunch. He enjoyed it when it arrived and ate everything, hungrily. Once full, he was happy to sit while most of us indulged in pudding and then cups of tea, while talking, but he made no move to escape as he sometimes does once he has finished eating. It was only when outside in the car park, as we said our goodbyes that he would not stand still and tried to run off, but up until that point, I could not fault his behaviour.

Hopefully he will tolerate the long drive home and he might even doze as we will get home after his bedtime, although he is less likely to sleep in the car than he once was. We have been very fortunate with Joshua’s tolerance for long car journeys, he tends to sit quietly and enjoy the ride. Usually he sits in the front passenger seat, due to his long legs, while his Dad drives and I am in the back seat next to all of our luggage, with the three dogs and the wheelchair in the boot, so we are a heavily laden car and my husband’s loading of the car is a creative art-form.

We will all be sad to leave our seaside paradise behind, knowing that we will not be back until the summer, but we cannot be too greedy, we have been very lucky to get away.


All is Well

It is half term school holidays this week and we are lucky enough to be able to go away again! We are very fortunate to have a home from home beside the sea to visit on holidays and its only downside is the long day travelling in the car to get there. But thankfully, Joshua is a great traveller; he used to sleep but now he stays awake for most of the time, looking around, eatingwaving and listening to our music. We stopped half way to let the dogs have a short walk and to grab some lunch and a break. While the woodland walk was a success, we made a mistake of buying lunch at an inpromptu cafe that was a double decker bus, with outside seating. The sunshine had brought many walkers out and so we could not find a table to sit at, just a bench. While my husband and I waited for our hot sandwiches to be cooked, Joshua enjoyed his chocolate muffin and quavers. So when our food arrived, he was ready to leave. so I was juggling an egg roll and a determined escapee, who wanted to get into the nearest car! Needless to say, it was not a relaxing break and we were all glad to get back in the car.

We arrived at the port earlier than the ferry we had booked and were able to catch an earlier ferry, meaning that we arrived before we were even due to set off and in daylight. Joshua knew exactly where he was as we approached and he started to get excited., pointing up ahead and jiggling in his seat. He was not prepared to wait in the car while we emptied the bags, he barged in too and he immediately found his favourite noisy toy that he had left out on his last stay, happy that he was at home again. He watched me make up his bed in his familiar bedroom and when the time came, later, he took me by the hand and lead me up to his bedroom, where he has slept quietly all night long, perhaps dreaming of beach walks and cafes that he will be looking forward to. All is well in the world, we are all together in one of our favourite places to be.

Holidays are coming, holidays are coming

I finished work for my two week Christmas break yesterday so I spent the day tying up loose ends and preparing to be away. I know how lucky I have always been as out offices close for the festive period, so I have never had to work between Christmas and new year. I know from experience that it will fly by faster than any other holiday. It is always a busier holiday than any other so I think that is what makes it go quickly, there is the run up to Christmas and then that lull before New Year and then bang, it is back to work. I joined my company on January 2nd 1990, so I am about to have my 29th anniversary, which seems ridiculous to me as that is a lifetime! How much has changed during those 29 years? I arrived newly graduated and keen to progress and learn, I had no idea back then that I would stay as long as I have. We got married after 5 years at work and bought  a house in the town where my office is, so I have a four minute commute, and we both worked hard, both doing more than our share of travelling for work. Then after 11 years, I took maternity leave to have, and then look after, baby Joshua.

I returned to work, for three days a week , when he was 6 months old and he went to a local childminder who had her own son who was 6 months older than Joshua. They all had fun together and that arrangement worked well and I had hoped that this would represent my permanent childcare solution. She took maternity leave to have her daughter and during that time, Joshua attended local nurseries, which he did not settle at and so it was with relief that he resumed his time with his childminder. That continued well until her mother died, leaving her an inheritance, and the family bought a retail business and she stopped being a childminder , sadly. So it was back to nursery until Joshua started at mainstream nursery school, which both he and I loved.

At that stage I increased my hours to four days a week and that has continued that I take Friday’s off. These Fridays are very precious to me, I have never been keen to resume full time hours. The plan is that my Fridays are ‘me time’, to use as I choose. Today for instance I am at school this morning for my monthly coffee morning, then I will do a supermarket shop on the way home and this afternoon, Joshua’s social worker is coming round. But they are not all like that, having last Friday off meant that we could enjoy a long weekend away and I have booked to go and visit two friends in the new year who I have not seen for many years. During term-time Friday is a day without Joshua at home, so whether I am doing things on my own, at school, with my husband or friends, it tends to be a Joshua-free day.

It is the last day of term today for him and so it will be my last Joshua-free day for two and a half weeks, which will be fun. I know that he enjoys school so now that he is busier and  more active, we will see how we all get on. He will enjoy the family-together time, although he will probably be less tolerant of the inevitable time that will be spent in the kitchen in the build up to Christmas, as he is less willing to watch from the snug, these days he comes into the kitchen too and stands very close, demanding cuddles and wanting to help by opening and closing drawers and cupboards for me. He used to be oblivious of what went on in the kitchen now it is a source of interest and also annoyance, as it is somewhere where he does not get full attention. He used to have long teenager lie -ins , so you could get on in the morning, but more recently, he is too busy to stay in bed and he usually appears around 7ish, ready to attack the day at full pace.

So today is the first day of my Christmas holiday…bring it on!





is day one of my Christmas holiday…bring it on!

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.

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.