Game Plan

Yesterday I began what will be a busy weekend combining both work and fun, which has required a lot of planning and a lot of flexibility and assistance from others. I am working today and tomorrow morning in the North West, but when I ‘clock off’ at midday tomorrow, then I will be going to the theatre, to see the musical ‘Matilda’ , with Joshua and a friend and her son. So I will need to be adaptable to switch from work to play mode, from employee to mother/friend mode and back again, as I revert to working again on Sunday. I bought these theatre tickets as last year’s Christmas present for us all, so it has been a long time coming. But in August I won a contract and the client insisted that this was the only weekend that the project needed to take place. At first I said no, it was impossible as I had a prior commitment that I was not prepared to miss. The client was insistent, so I then began to work out if I could combine the two things and if so, how it could happen.

So Joshua and my friends will be arriving by train tonight and I will meet them at the station as my work commitment will be over by 7.30pm and we will have what is left of the evening together. I hope that Joshua behaves during the two hour train ride, but she is armed with the ipad if ’emergency Shrek’ is required as a distraction. H eis often exhausted by friday so he may sleep on the train ride. I imagine that he will be surprised to see me pop up at the railway station. I will sneak out of the hotel tomorrow morning as I have to work again, leaving  them all to play and I will be able to join them from midday for the rest of the day.

But then on Sunday I will have to leave early as I have to drive to London and to work again, leaving my friend to take her son and my son  back by train, where he will be met by staff from our respite provision , who will take Joshua off her hands, as this should have been our respite weekend. So I have only been able to achieve this weekend through the cooperation of both my friend and the flexibility of the respite provision, who will keep Joshua all Sunday day and night, sending him to school on Monday morning as usual. By the time Joshua will get home from school on Monday afternoon, I should be well on my way home!

It is complex plan and I have left my husband with a detailed list of where Joshua and me are at any point over the weekend and who is in charge of him. We are lucky that Joshua is adaptable as this weekend would be a test for anyone, let alone someone who may not understand plans. I am hoping that he will just go with the flow and enjoy the variety of carers that he will experience this weekend. Watch this space though……


Home from Home part 2

I left work early yesterday to take a look around a second possible adult respite provision, which is just 25 minutes drive from home, so is very convenient. Each time I do this, it reinforces the fact that Joshua will have to leave his current provision too soon and start again elsewhere, which is always a daunting prospect. So I am looking around, trying to picture a grown-up Joshua in this setting:

My first impression was not great as on entering, there was a reception desk and then a long corridor with offices off it, so it felt more like a hospital than a homely environment. Then it opened up into a large lounge area, which  felt like a hospital waiting room to me. There were two young men in there, lounging in armchairs, gazing at a television in the corner and I have to say, my heart sank. Then the lady showing me around, explained that they were awaiting their evening meal in 15 minutes, so I decided that perhaps I had caught them in a lull. The tour continued through double-doors into a large adjoining daycare facility and I was told about the activities that ‘service users’ enjoy there, although it was deserted when I was there.

Then she showed me one of 7 downstairs bedrooms, which were purpose built and very luxurious : the room was roomy, with tracking on the ceiling for a hoist and it had an ensuite bathroom, a television and a view out onto a large courtyard area outside. There were another 7 bedrooms upstairs and another quiet lounge. So then I had seen everything and she was able to answer all of my many questions, they are very comfortable with epilepsy and administering emergency medication. There was more flexibility over dates than at his current provision, in that you could save up your annual allocation of days and book a longer stay, potentially enabling us to go for a holiday longer than a weekend at some point in the future.

I felt uneasy about the ‘service users’ that I saw there however, as they were drifting around unsupervised. Joshua would need more direction than that and he would need close supervision for his own safety, he could easily have a seizure and fall down the stairs or burn himself in the kitchen. He would also need to be kept away from the reception and office areas for their protection, as he likes nothing better than to play on the telephone or computer keyboards and to scatter important papers and hide things – we have lost our TV remote control for over a month now! Perhaps the young people that I saw were more capable and independent than Joshua, but I cannot picture him in that large lounge, lolling in an armchair waiting patiently for his tea, he wreaks chaos at home in the run up to mealtimes, when I am distracted in the kitchen.

So my gut reaction is that it was not right for Joshua and I still have two more options to review, so I am keeping an open mind. I fear that we have all been spoilt by the excellent care that Joshua receives at his current provision and perhaps there is not as adult equivalent in our region, but I continue to seek it out.

I Second that Emotion

I expect today to be an emotional day for three main reasons : firstly, this morning will be the last time that I will see Joshua until Monday evening and that is a really long time without seeing or being with him. This is his short breaks/respite weekend and we are going away on a trip overseas tonight, so I have been busy packing both for his weekend away, buying pet food in bulk to leave behind and our packing – although ours is still incomplete and can be finished off this afternoon before we catch our ferry. I have been talking about Joshua’s weekend away with him but I am never sure if he understands, but he does recognise his overnight bag that always goes with him and he seriously studied me packing it last night on his bed. I am optimistic that I will receive timely text updates throughout his weekend, which will keep me updated , preventing me from worrying and wondering.

Secondly, I am having my first ever mammogram this afternoon and I am not really sure what to expect, other than discomfort. So that will be a new procedure in my life, now that I have reached that age in my life when the risk of breast cancer is highest. It has coincided with a diagnosis for an important lady in my life, as she begins her chemotherapy next week and I wish her well and a speedy recovery.

Thirdly, this morning is the harvest festival at Joshua’s school and I have always loved this celebration. I recall the first one that I went to back in 2011, back then the whole school walked down to the local parish church, which was a feat in itself. I sat at the back of the church and was overwhelmed by the singing, signing, joyand care in the church and I cried throughout it. Lots of concerned staff stoppped me on the way out to check that I was OK and I sobbed that I “loved it” through my uncontrollable tears. I am made of stronger stuff 7 years later, as I have seen several more school performances like that since, and although I may shed a tear or two at something poignant, I am ready and armed with tissues.


We are Family

We all fulfill many roles in our lives : I am a mother,  wife,  employee, friend,  Director,  school governor and  a dog-owner, amongst other things. But this weekend, I am a daughter and a sister primarily. For a treat, I have come away with my Mum and my sister and we have stayed away overnight, leaving my husband in charge of Joshua .It has been a real break to mooch around a stunning town, without worrying about wheelchair access and where the nearest disabled toilets are and to not have anyone grabbing the sunglasses off my face regularly, but to think about myself and what I want to do more than usual.

We met around midday yesterday and we have laughed a lot since then. Having checked into our apartment, which is both modern and luxurious, we headed up the hill to a famous tearoom for our pre-booked afternoon tea. It was held in a beautiful bright room and we were seated in prime position by an open window overlooking parkland and a pianist played, as we absorbed the special atmosphere. We giggled, took photographs and enjoyed the most delicious food and drank endless cups of tea from bone china. It was a perfect way to spend an afternoon together and our two hours in there, just flew by and we swore that we would never need to eat again!

We walked around a park on the way back to our flat, which was also stunning and the weather helped as it was a balmy evening, so we felt like we might be abroad, rather than less than two hours from home. We collapsed on the leather settee, compared photographs and Mum wrote her postcards from her holiday. After resting and digesting, we  were renewed and we changed and headed out again for drinks on the terrace of the large hotel opposite. We observed and speculated about a black-tie function that was being held there and we planned our next jaunt next year! We decided that we could fit in some more food after all and at 9pm we sourced a very tasty sharing platter to keep us going.

We were back at the apartment for 10.30pm after our big night out, then it was bath and bed. We have another big day of family fun today, before we each head back to our respective homes and lives. But this has been a wonderful mini-break  : a holiday with the only two ladies who have known me all of my life and a real break from some of my daily responsibilities. So I am feeling  very fortunate and grateful this morning.

“Your Josh”

As I left to pick Joshua up from respite, I was fairly certain that he would be pleased to see me but I underestimated by just how much. When I arrived he was sitting on his own in the conservatory, and  a member of staff said that he had just had to tell him off using his full name, for hiding the landline telephone again! As I came out of the darkness for him, repeating his full name and wiggling my finger at him, he was squinting, trying to see who it was! It was only when I got closer that he recognised me and he leapt off the settee and ran towards me, beaming. He squoze me tight and would not let go for ages, grinning from ear to ear.

He ran down the corridor towards the exit and leapt into the car, I do not think that he had had a bad stay, just that he knew where he would rather have been this weekend. He shut the passenger door behind him leaving me to load his luggage and wheelchair. When we set off, he kept grinning at me, getting his face really close to mine and he said ” Your Josh!” and I agreed, that he was indeed ‘My Josh!’. For the first 45 minutes of the journey home, he was very giddy, talking constantly, high-5ing and eating an apple and a packet of crisps. Then he suddenly drooped and went sleepy, but he had second wind when we were almost home, as he recognised the familiar roads and he began shouting “Back home!” adn got excited again.

When we pulled into the drive, he did not wait for me to shut the gate, but he leapt out of the car and ran into the unlocked house. He scanned the house, going into every room and playing with everything briefly – so at one point he was playing the piano, with Robbie Williams singing in the background, with Shrek on the ipad and the cordless hoover both lying on the floor and surrounded by tennis balls to throw for Ruby. There was absolutely no doubting that he was happy to be home. He devoured his lunch and then wondered about a nap,but was too busy to fit that in.

I love how Joshua shows his affection and his emotion, it would be impossible to miss even by someone who did not know him that well. He has very limited language but he still managed to talk all the way home. There was no hint of a sulking teenager or an epileptic who had recently had emergency medication after a bad cluster of seizures, this  was a happy young man who had all that he wanted in life.



Mother knows Best

I have not felt bad about Joshua having monthly short breaks for a long, long time : I know that we all need that time away from each other in order to refresh our batteries, to top up and to renew ourselves ready for the month ahead – in fact two months in this instance, as we do not have a respite weekend booked in September, instead we are having two in October! This time I have had my doubts that Joshua wanted to be there, given the sad send off that we received on Friday. To make matters worse, he had a cluster of seizures yesterday and he needed his emergency medication.

In my experience, it is when you are ill that you want to be back home and that you need your mum, but Joshua had neither. So I will be pleased to pick him up this morning and to give him both of those things that were missing, when he needed them most. When he has had his rescue medication, he tends to go very drowsy; as I undertsand it, Midazolam is an anaesthetic, so it calms the brain down, which is why his seizures stop, but inevitably it calms the rest of his body down too, so he slows down and often sleeps. When he was a little boy, as his dose has never changed, he would go into a deep sleep for hours and hours, now it is just 30-60 minutes typically, but then he is rather dopey and slow for the rest of the day. It sounds as though Joshua did that yesterday : hour long sleep and then he was alternately lively and cheeky, then he would crash again and need to sleep or just lie down. I was reassured that in his wakeful moments, his sense of humour and his appetite did not desert him!

I know that this only happens fortinghtly, or even monthly, now but it is still devastating each time and it makes me feel so much worse, to know that we were not there. Fortunately, the respite staff are likely extended family to him now, so provided he was with someone familiar, I am sure he will not have been too frightened. The seizure contorts the muscles in his face but it gives him a terrified expression on his face, which is never pleasant to witness as you wonder how he is feeling and is his face reflecting his actual fear. I would love to have one of his seizures  so that I knew precisely what he was going through.

It sounds as though  the respiet staff did exactly the right things yesterday , I know that he was in safe hands. But when you are unwell, there is nobody quite like Mum is there?

Out of sight but not out of Mind

I wrote yesterday that Joshua would be aware that he was going to respite, as he is just so much more aware of his surroundings than he once was. He was very quiet all morning and more serious than normal, as though he was absorbing the event and his reaction to it. He kept seeking me out, as I was busy preparing, and giving me giant bear hugs and insisting on attention. He was silent most of the hour+ journey and his highlight was finding an apple in the car, which he passed to me and we ate it together – I really love his re-found love of  a crunchy apple.

My husband and I jumped out of the car when we arrived and began to unpack it – his wheelchair and bags – but he made no attempt to get out as he would usually. His keyworker came out to greet him and he gave her a huge grin and walked in with her. He whizzed down the corridor to the lounge to see who was there and I followed him. He knew we were leaving him, he pointed at all of the staff and gave me several more bear hugs. I gave them an update and we discussed his recent seizure pattern, then he went to his bedroom with his key worker to drop off his bag, not giving me a backward glance, so we walked towards the exit. My husband followed him to his room to kiss him goodbye and of course I followed, to find Joshua sitting on his bed in his freshly painted blue bedroom. As I walked away I blew him a kiss and he held his hand up to his mouth to imitate me, I have never seen him do that before.

We were talking to his key-worker at the entrance , sharing holiday tales, when Joshua heard my voice and came running towards me, holding on tight.He watched as we left, standing right by the glass door, flashing his bare tummy at us. He has never watched us leave before, so I guess this is the downside of his increased awareness. Joshua made it very clear that he would rather have come with us and that made me sad of course and very difficult to leave.

I know that he will have fun and enjoy the fuss that they make of him this weekend and Joshua has never been a boy to pine. I know that he loves me but I also know that he lives for the moment, and it will be out of sight and out of mind for him, but I cannot get that sad image out of my mind.

I called last night after 9pm, as I always do before the staff shift change. I was hoping for a cheery story to replace that image but unfortunately : he had refused to eat any tea – which is unheard of for my new greedy son with strong teeth -,  he had taken himself to bed for a half hour nap before tea and he had tumbled in the corridor and landed on his knees. I was told that he had caught his boot on the radiator and that, even though there were three members of staff present, none  had been in time to catch or save him. She told me that he was stunned and did not move for some time and that his poor knobbily knees will bruise. None of these stories helped me to feel better about the start of his respite weekend sadly. I have always been comfortable that we all enjoyed our time apart, but so far it feels more one-sided. I am sure that he will settle in and enjoy it more today and I need to resist the temptation to call back during the day, but to stick to my 9pm routine.