We went out with friends for an early birthday meal to a favourite pub of ours. Joshua was very excited to be out and was grinning and waving at everyone. We had been sitting for about ten minutes, perusing the menu, when he had a seizure: I struggled to keep his head from banging the solid table and it seemed to last an age. My heart sank as I knew that it meant that he would not now eat a meal, he looked so must have felt ghastly and I was anticipating one of his sleepless nights.
We went ahead and ordered, with Joshua resting his exhausted head on a cushion on the table, but we decided against ordering his own meal but agreed he could share ours if he recovered enough. Joshua ate one of his dad’s starter fish cakes and half of my cod loin and vegetables, so he did not miss out completely. He was very starey throughout the meal, randomly calling out ‘mummy’ and ‘daddy’ and pointing at usually the wrong people.
We brought him home, where he was equally restless all evening and he did not stay in bed when he was put there and he did not want to sit still on the settee, even though he was trembling. So it was with low expectations that I took him up to bed after midnight, when I was more than ready for bed. He did not sleep at all, though I must have nodded off a couple of times, and eventually he climbed out of bed at 4 asking for ‘tea’, so here we both are and I am typing while he devours his third slice of toast!
And it is this kind of night, that reminds me why we are seeking a monthly respite solution. Did you see the news headline this week that respite for parents of children with special needs has been cut by an average of 15%? well in 2015, ours has been cut by 100% since February! But we have made progress in that direction at least, as next month Joshua will stay on his own for a full Saturday – 10am until 6pm – and the month after, he will progress to one overnight stay.
To cut respite provision for us carers is such a false economy for us carers as if we are exhausted, that is when we are all vulnerable and the NHS will end up having to pay the bill! Joshua does seem more likely to have one of his sleepless nights at weekends at least, so hopefully I will catch up on some rest later today, which is a blessing.