Joshua has never been a good sleeper, which is why I am writing this blog at 2.30am. Now that he is 14, I can count the number of nights when he has slept through on two hands perhaps. He always used to wake around 3am and often took some time to re-settle. so I became used to broken sleep. My problem is that he often sleeps during the day, at home or at school, which I rarely get the opportunity to do, and therefore if these naps are too long, it can become a repeated cycle , which is difficult to break.
Now that Joshua is a teenager, if he sleeps at all, he tends to sleep all night through – this changed after he had brain surgery last year. But since that surgery too, Joshua has a new thing which is definitely seizure-related : every week or so, he will have a night when he does not sleep at all! He will either sit up in bed staring all night or not be able to settle, attempting to jump out of bed every 30 minutes or so throughout the night. This behaviour can be in anticipation of a seizure which eventually comes in the early hours of the morning or after an evening seizure. As he has no feel for his own safety, he cannot be left alone during nights like those and so, consequently, neither of us sleep.
We are in the process of trying Melatonin, a natural sleep inducer apparently, but we are still experimenting with the dose to find a level that works.
There are several consequences of this sleeplessness:
1. Joshua is understandably very tired the following day, and he would more than likely decide to fall asleep around 6am , so he will be very reluctant to get up for school 90 minutes later! Joshua’s school can accommodate him sleeping at school, although it is far from ideal and it can be a cycle that is difficult to break.
2. One of the triggers for seizures, is tiredness. so it is highly likely that after a night like this, he will have seizures the following day. I am therefore never sure whether or not to send him to school, but I tend to do if I can as if he stays home, the chances are that he will sleep all day, and then he will not be ready for bed again the following evening
3. I work part-time, but I struggle sometimes to complete a day at work, after a night of no sleep or a night of up to 2 hours’ sleep. I do not have the luxury of simply sleeping when Joshua does, like you can do when your child is a baby and you are on maternity leave!
It is this sleeplessness that is one of the many reasons that respite is so valuable to us, to give us the opportunity to catch up on a night of undisturbed sleep. In the years when Joshua has had overnight short breaks with two different providers, they never reported that Joshua did not sleep. In fact, the opposite was true, he was usually tucked up in bed at 8.30pm which was very rare at home, and often had more than 12 hours sleep there.
As a result of 14 years of broken sleep, I have adjusted and now seem better equipped to deal with restricted sleep. I sympathize wholeheartedly with new mums who complain of their broken sleep, and I have to bite my tongue when someone tells them that it will not last forever! I have come to the conclusion that, sleep is for losers!