Joshua slept until 11 am yesterday, which is rare but I put it down to exhaustion after a busy half term at school. But when he did not finish his Weetabix and he curled back up in bed,going back to sleep, I knew he was unwell. So I gave him some magic Calpol and waited for the miraculous improvement. But it did not come, he went back to sleep and he was snoring away every time I checked on him, so I left him to heal in his sleep. But by 4pm, I was concerned and thought he had been in bed long enough. I took him his medication in some nutritious rice pudding and went to wake him. His complexion – he has transparent skin that loses all its colour when he is sick – was grey and his Pyjamas were soaked in sweat, he was unwell. He managed to eat the rice pudding and had another dose of Calpol but he was not interested in coming downstairs once I had changed his PJs, it seemed he had more sleep in him.
So instead after half an hour, I ran him a bath and he was willing to try that as he does love his baths. He loves the bubbles and warm water, he kept turning the hot tap on wanting more hot water. After that he had more colour in his cheeks and he looked more human, but still had no energy. He managed to eat some tea but he was back in bed and slept all night, from 8pm so of the 24 hours yesterday, he cannot have been awake for more than 4 of them.
So this morning’s decision is, is he well enough to travel on holiday as planned today or does he need another day in bed to recover from this germ that knocked him off his feet? If we do go, it will be 6 hours in the car before we take a ferry then arrive at our destination. It is yet another situation this week when I have been wishing for a crystal ball : I want to see into the future to see how the journey goes and how unwell he will be today, before making the decision to delay. I do not want to make him feel worse by rushing him into a long car journey. But once again, no crystal balls are on hand and Joshua will not even be able to explain how ghastly he feels when he finally awakes. It was obvious yesterday, so I am hoping that it will be equally evident this morning and that we then go on to make the right decision for us all.
I began the process yesterday of searching for suitable daycare for Joshua from next summer and I was pleased with the progress that was made on day one. In the early hours of the morning, I sent out four emails to local providers introducing Joshua to ask if they were equipped to meet his needs, before arranging to visit. During the course of the day, I had two phone calls and one emailed response, which I think is a good initial response :
The email explained that they were trained in giving Joshua’s rescue medication and invited me to take a look around. The first phone call began with an open question: ‘Tell me about Joshua?’ which threw me slightly. I had to think quickly to be able to filter out the aspects of his personality and presentation that might interest them, on top of what I had written in my email. Once I started to describe him, ‘warts and all’, I found that I could not stop! Afterwards she thought that they could meet his needs and invited me to bring him along to look around. I asked that I came on my own initially, so that I could concentrate, rather than being distracted by Joshua and his antics. The second call came in the afternoon, and she described their service as being dominated by wheelchair users and their medical training, dealing with peg feeding as well as rescue medication. It soon became clear that Joshua would be too able and too mobile for their service, and so I ruled it out over the telephone. I am looking for somewhere where he can mix with his peers who are like him.
We did not get as far as practicalities such as whether or not there was space for him and how it would work, but I had a good feeling about the provisions and I was very pleased with myself that I had finally put my foot on that particular ladder. Somehow it does not yet feel as daunting as the search for new adult respite was last year : that may because it involves shorter stays and no overnight care or perhaps I am deluded and when I begin to look around, then the reality will strike. It still involves a big decision but I tend to be be led more by my heart than by my head, does it feel right for Joshua? were the staff pleasant and were the young people happy there? So this initial filtering process is more factual – where are they based? are they Midazolam trained? what activities do they engage in? – but then when I visit I will be hoping to get a sense of the place and the culture and whether or not it suits us all as a family. Fortunately I have a pretty good track record of basing decisions on my gut feel : I knew that his current special school was the right educational placement for him and we went to tribunal to ensure that he got what he needed and I fell in love with his Children’s respite provision instantly, as soon as they opened the door to me. My choice of adult respite was sealed when we took Joshua to look around and when I saw how the staff interacted with him, rather than focusing on us, which is what I wanted to see.
It feels as though I took the first tentative steps on the next journey in Joshua’s life yesterday, so lets see how that journey turns out and what twists and turns we face along the way.
Joshua used the word ‘together’ a lot over this weekend and beautifully in context too :
On saturday morning, when he came downstairs, he looked out of the kitchen window and commented ” No bus!” which is what we call his school taxi, so I replied ” That’s right Joshua, no school today.. we are going out in the truck later”. He loves a drive out in our pickup truck so he replied ” Truck.. Together” and he beamed at me. That warmed my heart to see that the prosepct of a family outing, made him so happy.
On that trip later in the day, we pulled into a service station for diesel. I hopped out of the truck and told him that I would not be long and he replied ” together!”. I filled the car up then went inside to pay, during which time he had kept opening the pasenger door to peep at me. Joshua slid his feet onto the ground – he has very long legs – and swivelled round in his seat, but thankfully he was trapped by his seatbelt and so he could not get out , so that we could be together.
Finally at teatime, I asked him if he would prefer to eat his lasagne at the kitchen table or on his knee in the lounge, in front of the television? He pointed at the kitchen table and requested ” together”, so that is what we did.
This progress is so special as he is using so many more words these days, but he is not just repeating them as he did this time last year, he is using them perfectly in context, to express his clear preferences. He has never in his life really had that interest or communication skill to enable him to make such choices. In these three examples, Joshua clearly indicated , more than once, that he wished to be with me, his mum, which , coming from a 17 year old, is very special indeed.