Time playing Tricks

Today is 2nd of June and I feel as though I missed May somehow, where did it go? Joshua’s half term school holiday has come and gone, yet I seem to have missed it. Mum has not been around for over a week now and yet it seems a lifetime ago that she died as the last ten days have been the worst of my life. Those 11 days with Joshua in special care, when we received his brain damage diagnosis, were tough days, but we had our new baby to see us through and I had my Mum by my side. The time we spent in hospital when Dad was dying were hard, but we had already lost him to dementia years earlier and once again, we had Mum by our sides.

She has been a constant in my life, through good and bad times : we always celebrated every family birthday together – I am so glad that she shared in Joshua’s 18th birthday celebrations in March – , she has stayed with us for the last few Christmases too and is always a perfect and helpful house -guest and we had a wonderful Mothers Day lunch out with my sister, mother in law, husband and Joshua and that was another happy day.

We have over a week to go before Mum’s funeral and over the past few days we have made huge progress to making her funeral into a celebration of her life well lived. My sister and I have organised things with the funeral director and we have sorted  out the venue for the refreshments after the church service. Yesterday I booked a violinist from a music group that Mum loved, to play as guests come into and leave the church and that will be really special. We began the process of choosing caterers but we have a very specific idea of what we are looking for, an event that Mum would enjoy and approve of so we need to get that choice right. My sister and I will meet the minister next week to discuss the service itself and we will start to pull the Order of Service together with some family photographs.

It has been helpful to have this focus on Mum’s funeral and to forget everything else that will need to be done eventually, but we are in no rush to deal with the house or Mum’s finances. I do worry that we will both fall off a cliff after the funeral, but I know on that day, we will be surrounded by love and support – as we have been since she died to be honest. I like to think that Mum’s spirit is still around supporting and comforting us, and giving us a gentle smack – like Joshua – when we begin to wallow too much in self pity. We can do this!

Time flies

Today is the last day of the first half of the spring term, so we have a week’s holiday before the run up to Easter already. As somebody pointed out to me yesterday, that means that we are halfway through the academic year already! How does this time fly away so quickly? We are galloping through time and whatever I do, I am not able to slow time down and halt the approach to Joshua’s fast-approaching adulthood.

So rather than resisting it, I must face time’s inevitable passing, and simply try to make each moment count. I certainly try to inject fun into our lives, with holidays, short breaks, trips to the theatre for instance, but of course there are also the everyday activities  – school, work, supermarket shopping, laundry..- and it can be tougher to make these fun on occasions. But Joshua gets his joy from people and their reaction to him and so even our weekly visit to Tesco can be an adventure for him : he loves to push the trolley with me, and can really get some speed up. He enjoys interacting with other customers and he often likes to snack on a treat as we walk around. He will , on occasions, sit beautifully at the end of the tills while I pack and pay for the shopping – more often than not he finds it hilarious to accost other people’s trolleys or to run off when I have my hands full!

My point is , however, that Joshua sees most activities as an opportunity to interact with someone or to enjoy some food, both of which he loves. We both collected him from school yesterday and my husband wanted to stop at a garden centre on the way home, whereas I was intent on getting back. Initially I suggested that we waited in the car and then we agreed to come too, but under protest. We started to walk towards the plants , when my husband asked ‘would you rather go in the cafe?’ With that, Joshua heard the magic word and instantly put his brakes on and spun around, the decision was made. That detour became a treat where he enjoyed a glass of orange juice and a slab of chocolate cake. and he consumed both with great relish, while waving at the other customers.

Joshua is somehow able to turn the mundane into a fun treat and that is a great skill that he has there, and one that I am going to try harder to achieve too.

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.

Time and motion

I enjoyed the bank holiday Monday extension to our weekend but I know that I will be bewildered about the days of the week now, all week. It felt like Sunday all day long and I kept getting caught out when I realised that it was in fact Monday – I was expecting  different television and radio programmes to be playing and I was expecting Riding for the Disabled to be on tonight. It will probably take me until the end of the week to accept where I am, when.

Luckily I do not think Joshua has any concept of time or the days of the week. He will not have realised that his weekend was one day longer than usual. Joshua goes with the flow and relies totally on us, his parents, to know if this is a school day or not. I always think that school uniform must be helpful to forewarn him that he is heading for a day at school.

Joshua does not really have a sense of the future, so if I say that Granny is coming for example, he will look over my shoulder for her. It would be meaningless to say that he will see Granny in a week’s time, he lives in the here and now. I always think that must make life simpler in many ways, as he cannot worry about things that are going to happen in the future. But I also speculate then, what does he think when he has a weekend of respite, as is coming up next weekend. Does he have any concept of how long that might last for? Of when he might get home again?  and does that uncertainty create any anxiety for him? I know that many people use the concept of something happening in ‘three sleeps’ but even that, I doubt would register with Joshua.

But nonetheless, as I wave him goodbye on Friday, I will still say to him that I will see him on Monday, even though I am not sure that any of that means anything. Fortunately he is not a boy who frets and he will be having so much fun with them at respite that he will not give us a second thought.