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.


Now, the end is near…

This recent weekend was due to be Joshua’s last respite weekend at his children’s provision as it should end when he turns 18. However as we have not yet finalised where he will go as an adult, we have asked for a few months’ extension, to give us some breathing space to identify his new provision and to begin the transition process. This request has to be approved by OFSTED I understand, so it is not simply a matter of his provision having room for him. I want their help in briefing the new adult provision too, as they are best placed to explain what he is like while under their care as he is bound to be a different person that when he is at home.

I have been told that he was on top, affectionate and flirty form while we were away this weekend and so they have enjoyed having him there. He was flicking the staff’s hair and pony tails to get their attention and putting his face very close to theirs – he is comfortable to invade the staff’s personal space. I hope that he is able to build that same kind of relationship with the staff at the adult provision but they may be more stand-offish as they are dealing with adults rather than children. My concern is that, just because of his 18th birthday, it will not change Joshua’s personality or needs, his mental age will not increase, just his physical size.

That is why the staff and the culture of the place, is more important to me than immaculate walls and large en-suite bedrooms. I need to be able to picture Joshua somewhere and to feel that he will be treated as he needs , and  wants, to be cared for. I am looking for a home from home, where I feel that he can be happy. Joshua’s short breaks are not about us getting rid of him so that we can get away and relax without our caring responsibilities – although we really really enjoyed our weekend in Spain! I need to know that he will be having fun away from his parents, that he will be mixing with other young adults of his own age, doing activities that he enjoys and to know that he will be safe at all times. Joshua’s happiness and safety have always been priorities for me, and that comes down to the staff that work with him, both at school and in respite.

Once we have finally got respite organised, we will then quickly need to turn our attention to looking at Daycare options for him, to replace school from July 2020, which will be another wrench. Again school will support us with that transition but even so, I am not looking forward to that big change. It is all made more difficult by the fact that Joshua is oblivious to the change that is about to happen, all he knows is the here and now, that he loves the staff that he sees daily at school and monthly at respite, he trusts them to make the right choices with him. Joshua’s fast approaching adult status is irrelevant to him. The single good thing about all this unsettling change is that Joshua is much better at it than I am; although he is clearly happy where he is, he is unlikely to be too distressed by a change of setting. Perhaps he could teach his Mum how to handle change better?

Love is in the Air

Joshua may be virtually non-verbal, but that does not mean that he cannot communicate how he is feeling. Last night, when we got home at 8pm, after not seeing him for five days, Joshua heard us come home. He was in his bedroom, Yorkshire Grandma was getting him ready for a bath, and as we came upstairs, he started shouting ” I like you!”. He leapt off his bed in a state of undress, and gave me the biggest hug ever. He kept looking at Yorkshire Grandma then at us and he would squeeze me again. His eyes were twinkling and dancing with excitement, he was so happy to be reunited again. He hugged me while I heard stories from the weekend and then he grabbed my hand and lead me towards the bathroom. It was clear that he wanted me to help him into the bath as he waved goodbye to Yorkshire Grandma, grinning, so she was dismissed and no longer needed. During his bath, he kept looking at me in disbelief and saying ” Thank you”.

I have never had a welcome home like it, nor felt more loved and wanted by him. I feared that he might not want to go to bed, that he was too excited, but after his bath, he got into his pyjamas and then bed, without any fuss at all. He snuggled down and happily took his bedtime kiss, content that normality was resumed. I am looking forward to getting him ready for school this morning, to seeing if he is still as pleased to have me back home.

Joshua may not be able to express much about how he is feeling, but he can certainly show and share love, which must be the most important emotion to be able to demonstrate, and so I am very grateful for that.

Homeward Bound

Today it is time to pack up, tidy up and head back home. We have had a great little holiday and it feels as though we arrived a long time ago. We have enjoyed some beautiful sunshine, some delicious food and wine, some fun walks and plenty of siestas too, so what more could I want?

Yesterday I had several blurred photos from Yorkshire Grandma of Joshua when he got home from school and when he was tucked up in bed . I cannot wait to be reunited tonight when we get home; I am expecting some of his bear hugs but maybe some sulking too . Given that he has been at respite and had two nights at home without us there, it might feel to Joshua that we’ve been away a long time too and so he might wish to show that he’s not impressed by our desertion.

I am not sure how Joshua measures time passing, or if he even does. I wonder if he counts ‘sleeps’ at all. I have always said that Joshua lives in the here and now and that he does not pine for us while we are apart. But while that might have been true in the past, these days he is more aware of what is going on around him and so he might feel it more than he once did. I like to think that so long as he is surrounded by love , attention and food, he won’t miss me too much! I am sure that, while apart, I have thought about him more than he has about me. So let’s bring it on!

Technological Progress

It is 23 years since we stayed in this same apartment, which belonged to my boss back then. On one day of that holiday , we used a phone box to call my mother in law to wish her happy birthday , to be greeted by the news that our niece had been born that day.

How technology has improved since those days : I have been able to phone Joshua’s respite provision every night at 9 pm to learn how his day has gone, without leaving the apartment and the line is as clear as if they were just around the corner . Similarly, I have known that they could reach me in an emergency wherever I was due to my mobile phone.

I have been taking photographs of our holiday so far and have posted some of them on social media and have emailed some home to my mum,so that she can visualise where we are staying . On our first visit, we will have had to wait for prints of our holiday snaps on our return. There is Wi-fi in the flat now so we can access the internet here and the television has all of the UK Television channels that we watch at home.

When we came here last time , we may have used travellers cheques for our currency, needing to cash them in at a bank during opening hours. Twenty- three years later we can simply get Euros from a cash machine or pay with a debit card. I was able to check in online for our flight before travelling and so my boarding cards were on my phone, which meant no queuing at the airport to check in . I cannot remember who we flew with in 1996 but I think it was before the arrival of low cost airlines , so I suspect it cost a lot less to fly here than it did back then too.

That is a considerable amount of change since I was 30 years old and they have all made life more convenient.

Vote of Thanks

There are several people who have made this trip away possible, so now seems a good time to thank them: None of it would have been possible without Joshua’s amazing respite provision ,who look after him so well, that we have confidence to leave him in their capable hands while we go overseas. It has taken us three years to go further afield than our home county but in the last 9 months we have had three foreign mini- breaks. We are especially grateful as Joshua’s weekend could have been cancelled at short notice due to staff illness, so thanks for honouring our weekend.

Thank you also to our three emergency contacts – my sister, Yorkshire Grandma and my best friend, who are willing to be on red alert, to respond if an emergency call should come. Given how his health has been recently, this commitment has been more than a gesture this time.

Thank you to my colleague who has generously allowed us to stay in her apartment, so that it feels like a familiar home from home in the sun. Thank you to Yorkshire Grandma for House and pet sitting, so that the dogs could stay at home rather than going into kennels.

We are very fortunate to have had the means and opportunity to go away and already I can feel my worn- out batteries beginning to recharge. Some time apart from Joshua enables us to cope better with the 24/7 nature of his care and enables us to put ourselves first for a change.

Travelling Solo

I have to admit that travelling without Joshua is so much simpler: we flew through security at the airport and we were able to amuse ourselves while waiting in the departure lounge, enjoying breakfast and browsing in the shops. Once boarding, we went down two flights of steps onto a waiting bus and then climbed steps onto the aircraft that he would have struggled with and he would have objected to standing on the tarmac in the wind and driving rain. Our extra legroom seats were halfway down the plane so that would not have been easy and I was able to doze and read during the three hour flight as I wanted to, without any distractions.

Once we arrived at our destination airport, our pre- booked taxi was waiting and it was up to another hour’s drive to the apartment , owned by a colleague. We stayed here once before 23 years ago but our memories were hazy! We could explore the flat, opening the shutters to let in the sunlight. Then we set off to the local supermarket to buy supplies, which Joshua would not have appreciated having just arrived and inevitably one of us would have shopped , while the other had stayed back with him. We enjoyed buying supplies for a bread and cheese lunch, which we ate on the balcony in the sunshine.

Once full, we walked down the track to the beach where I had a paddle. We walked around to a neighbouring beach where I had a cocktail at a beach bar, before meandering our way back. I then went to bed for a two hour siesta, a rare luxury unless Joshua is tired too.

At 9 pm UK time I called his respite provision for news : he had been playing ball and had gone out in the minibus for Donald’s chips but went to bed, worn out, at 8.30 pm. All was well so I could relax and enjoy a glass of red wine, toasting our little holiday and our good son. Cheers!