Yesterday I only saw Joshua awake for less than 90 minutes in total, which is quite a change from our recent fortnight away, when we were together constantly. He woke up just 30 minutes before I was ready to go to work and so I had time to bring him downstairs, and to prepare his breakfast for his Dad to give to him, once I had left for the office.
He spent the day with Yorkshire Grandma, apparently he gave her a lovely welcome as I am sure that he had missed her. During their day together, he showed her how much his appetite had improved and he played his favourite two tricks of flashing his bare tummy and of grabbing her glasses off her face. At my request she had kept hold of him to give him his evening meal, so he did not get home until 8pm. I was given one of his bear hugs when he returned and then he settled in his den to watch some Robbie Williams on his DVD.
But he was restless and he climbed the stairs, before I had eaten my evening meal, saying “bed” so he lay on his bed, in his pyjamas, watching ‘Lion KIng’ while we ate downstairs. I took his medication up when I had eaten – he has taken a bedtime anti-epileptic drug as well as Melatonin for over a year now – and he took it willingly, as it indicates that it is time for a story then lights out. He snuggled down straight away, tired enough from playing tricks all day.
Joshua’s bedtime routine has never been as easy as this, for most of his life he has been reluctant to go to bed, reluctant to stay in bed and has woken around the magic 3am too. I have spent countless nights awake with him, particularly after seizures, he went through a stage of staying awake for 48 hours and this torturous phase lasted for over a year. The fact that now he will go to bed willingly at 9 pm, so that the bedtime routine is brief and successful, and that he usually sleeps through, is life-changing for us both: I get some of the evening to myself, which I rarely had and now any wakefulness at night is usually my own doing, rather than being down to Joshua, so I am better rested than ever. I used to have to snuggle him to sleep so more often than not, would fall asleep in his bed, but no I get to sleep mostly in my own bed.
Joshua too is better rested than ever, meaning that he can stay awake all day and that he can be lively and cheeky during the day. I am sure that his improved communication skills and greater level of alertness can be attributed to his improved sleeping patterns, as he has a consistency that he has never had before. H eis now typically asleep from 9pm until 7-8am which is the best that he has slept for his whole life. It has taken him 17 years to get the hang of sleeping at night but lets hope, now that he has cracked that habit, that he never loses it , as I am definitely out of practice now, thankfully.