An absolutely fascinating day

 

I went to the Sleep Workshop yesterday but I was the only parent who attended – I found it embarrassing that other parents had not seen its value, I had missed out on an opportunity to share with other parents of epileptic children and because there were three staff there to resource it, all just for me. But on the other hand, it meant that I had one to one attention and it meant it was all about my experiences about Joshua, rather than being diluted by other families’ experiences and we could focus on teenager sleep issues rather than those of younger children perhaps.

We began with some information about epilepsy and sleep and how the condition and the medications will both interfere with sleep. They were explaining why Joshua may struggle and were also reporting the ‘vicious circle’ that I regularly see: Joshua’s epilepsy means that he does not sleep well, so he is tired during the day and when he is tired, he is more vulnerable to seizures and so the cycle continues.

Then they shared some information about sleep, that at Joshua’s age he needs 9 hours sleep each night – I agreed that he probably averages that with the nights like last Monday when we have 2 hours and the nights when he sleeps until lunchtime! I was told about the importance of keeping to a good routine at bedtime, that the ‘wind down’ should take place about an hour before bedtime to allow melatonin to naturally produce and I was surprised by some sleep inducing food such as bananas, porridge and even dairy produce, like cheese. I was also saddened to learn that Joshua’s poor sleep could make him more vulnerable to heart problems, obesity and depression in later life and that poor sleep also impacts on his ability to learn and on his memory. As I explained to the course leader, that is just depressing news as Joshua is already burdened with learning difficulties and so he needs extra help to learn and retain information, not for life to be made extra difficult.

I have a problem with the need to adhere to the same bedtime routine at night however; apparently the impact of Joshua having a late night such as we did last Friday when we took him to see the Pink Floyd tribute band and he did not get home until after 11pm, is bad for his bedtime routine which will be disrupted for several days. Apparently he cannot simply lie in on Saturday and Sunday mornings to recover,

My priorities have always to keep Joshua ‘happy and safe’ and in the interests of his happiness, I was prepared to disrupt his nighttime routine to share an evening of his favourite live music with him and his dad. Even after the sleep workshop I am afraid that I would make the same judgement, because having family time together, experiencing fun together, is more important to me than in his being tucked up in bed on time, particularly when as a teenager I know how late he will sleep in until at weekends, whenever he has the opportunity. Indeed he did not disappoint me, and was fast asleep the morning after until 1pm, so he managed to have his 14 hours sleep and , on the face of it, no harm was done.

I went to work from the workshop and after an afternoon in the office, I attended further training in my role as a School Governor and so I got home at 9pm. Yorkshire Grandma returned to us yesterday after a month away and so she had kindly fed and bathed Joshua so that he was fast asleep in his bed when I gothome.She had been rewarded on her return by ‘the biggest smile in the world’ from Joshua  and I know that will have been a great tonic to her as she tries to re-build her life without her husband of 51 years’ marriage.