Do you ever have one of those days where clouds hang over you and your bad mood just infects everything? Where you spend hours feeling angry/anxious/miserable for no very good reason? One of those days when you wish you’d just given up and gone back to bed?

Yesterday was a bit like that. By the afternoon, lack of sleep caught up with me and everything just became a bit too much.

I got irritated when Hubby bonded with T over computer games rather than getting him to do guitar practice or tidy his room.

I snapped when Pudding ran away with my phone. Again.

I wanted to cry when faced with another load of washing up.

I felt horribly guilty when snatching the rolling pin away from Pudding (again) that I accidentally banged his head with it.

I lost it completely when T refused to eat his dinner ‘because the pastry fell apart’.

I felt sick to my stomach when thinking of potential reactions to a tweet that I never even wrote (yes, I’m expert at catastrophising over hypothetical things!).

And any number of other ridiculous little nothings. By the evening I was a seething mass of bleak negativity. It got to the stage where I was putting off going to bed as I knew that I would only lie there replaying everything over and over which would stop me getting to sleep.

And then just before I went upstairs, something on the kitchen wall at eye level caught my gaze. A bit of wilted spinach that I’d pulled out of Mr Fusspot’s dinner and flung at the bin in a rage. Was my aim really THAT bad?

I’ll have to admit, it made me giggle. And everything suddenly seemed a lot better.

Moral of the story?

Every cloud has a spinach lining!

(I should have taken a picture of the spinach stuck to the wall, but I didn’t think of that. So here’s a picture of the leftover tortellini pie that I spent a significant amount of time making before watching both boys reject it. It was rather tasty!)

Tortellini pie (pasta in a white sauce, layered with tomato sauce and spinach)

Sleep (again)

So, any regular readers will have been waiting on tenterhooks for an update on how Pudding’s move to his own room went and whether we’re getting any sleep. Or, more likely, will have completely forgotten about it….

After a massive clear-out of the office (which has now taken over our bedroom), Pudding moved in just before Christmas. The change didn’t seem to phase him at all, though I discovered that with his door directly opposite ours he sounded even louder at night. We waited until after Christmas though to take the cot sides off, and I am very glad we did.

When T graduated from the cot we did all the usual things. We chose new bedding, we talked about how he was going to be in a ‘big boy bed’ now he was growing up. It was an exciting time. But with Pudding it was different, as of course everything is.

When a child has communication problems and little understanding it is far more difficult to prepare for a change. I had no idea whether he would take it in his stride or whether it would throw him completely. Turns out it was the latter.

I suppose that having been in a cot for almost 5 years, apart from a few nights in a hotel room with me, it was quite a reassuring space. To suddenly have that security taken away rocked his world. He understood straight away that he could climb out of bed, and he did, finding it far more distressing that he was going to be left in the room by himself.

Every so often, like when we have the hour change in spring or autumn, he has found it more difficult to settle at night. At those times we’ve simply had to stay in with him until he fell asleep, only for a few nights, and I expected this time to be the same. It was a much slower process though: sitting by the bed with him on my knee to read stories, turning the light out, persuading him to get into bed, staying close by and talking or singing until he was fast asleep. Time consuming but totally worth it to save him from as much stress as possible. Gradually, gradually this has changed and I can now get him into bed, look at a book, turn the light off and go straight out. (On nights when it is Hubby’s turn, Pudding still has him wrapped firmly around his little finger though!) Dropping nap-time completely has helped too – he often can’t keep his eyes open much past six thirty now.

His distress was of course tough to deal with. What mother enjoys seeing their child in tears? However the worst aspect was that it brought on a period of separation anxiety at the start of the school term. Whilst previously Pudding had run in laughing to give his TA a hug, all of a sudden he was clinging to me and crying. This I found very hard and was one of the contributing factors to my low mood last month. But again, with the help of his TA (who became very good at pretending to hide from him) we’ve got through it and out the other side.

Strangely enough, the thing I was most worried about – him getting out of bed at night – hasn’t happened at all. As long as it’s still dark, he has stayed in bed for his nightly partying. We’re not taking any chances of course; he has a very stiff door with a stair-gate on the outside of it.

I’m just not looking forward to those summer mornings when it starts getting light really early…  Knock, knock, knock. ‘Mum-meee! Muuuuum-mee!’



Sleep like a baby?

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested.

I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I can keep things in perspective, write a reasoned blog post and get on with life. When I haven’t, I spend the day with a cloud of impending doom hovering over me and dissolve into tears at the slightest thing. And that can be hard to explain to outsiders. If they notice that I’m not being myself and ask what’s up, I have a choice. I can burst into tears and blurt out and say it’s nothing specific, ‘just everything’. Or I can blame the redness of my eyes on contact lenses that I’ve just put in, and to be honest that’s probably the easiest.

Recently I heard someone mention sleep deprivation after a few late nights. I didn’t comment!

I used to be a ten-hour-a-night girl. I lived in Sister’s house until Niece was a year old, but I would put ear plugs in and sleep undisturbed. When I got together with Hubby he could get up in the morning for his walk to work and I would roll over and sleep longer. If I had a late night, I’d be tired but knew I’d catch up with sleep the next night. I never questioned that luxury.

IMG_7007Then I had my own children. Everyone knows the theory – babies wake up all the time, but you get used to it, and eventually, sooner or later, they sleep through. And the sleep deprivation eases. I bought into that illusion. And yes, it did work with Twiglet. When he moved to a big boy’s bed (aged two and a half) we did have a few broken nights, but on the whole he sleeps like a log.

Pudding on the other hand…

Part of the problem I know is that since becoming a mother I think I simply don’t sleep as well as I used to. There is a small area of the brain that just stays on alert the whole time, listening out for the slightest sound, the slightest hint that your child needs you. And boy, does it get a work-out with Pudding!

Since he was a very young baby, he just hasn’t slept as well as ‘normal’ children. (Something I now know is common in MPS as well as other conditions such as autism) Every night he will wake up, perhaps at 9pm, perhaps at 2am, and have what I can only describe as a party in his cot. He’ll laugh and kick the bars and shout ‘You!’ at the top of his voice. He always sounds happy and goodness knows how he can have so much fun in the dark by himself, but I’m grateful for that at least.

Melatonin has helped. His wake-ups don’t last quite as long now – often more like half an hour rather than two hours. But in different surroundings, such as the hotel room in Manchester or the hospital ward, it can be difficult to persuade him back to bed once he’s awake and decides it’s time to play.

At home he has always been contained in his cot but this can’t continue for ever. With his size and slightly increased flexibility (a benefit from his weekly treatments) there is now the very real possibility that he could climb/fall out. So we need to move him to a bed. We’re currently in the process of clearing out the office so he can have his own room, as Twiglet probably wouldn’t be appreciate being jumped on in the night.

I’ve no idea what is going to happen. Will he stay in bed? Will he spend all night banging on the door to get out?

Wish us luck! And expect some more emotional sleep-fuddled posts from me in the near future….