I was up with Thurston a lot last night. I can’t remember what times or how many hours but I know that it involved heavy lifting of numerous toys and pretending to understand the system that he was filing his Mr Men books in.

Being nocturnal is one of the aspects of caring for Thurston that never gets easier. When I go to bed in the evening, I never know if I will get to sleep past 12am or whether Thurston will need me to help him with whatever he needs to be doing.
He is still using Melatonin to get to sleep and it does the job. However, he has such a regular sleep routine that I’m not actually sure that it is the Melatonin that helps him to sleep, or if it is the bottle, Emmerdale, bed on the sofa that helps him to nod off. Recently I have wondered that if the Melatonin helps him to sleep, then perhaps that is why he is so wide awake when he wakes? As if perhaps he is only in a light sleep. I remember vividly the days before we had Melatonin prescribed, how he would quite literally fight me to sleep for hours. He would grab, scratch, pinch, slap, kick. It was soul destroying seeing how distressed he would get and I genuinely think he is scared of falling asleep. It’s a real dilemma trying to figure out if coming off the medication is worth a try.

Once he is awake in the night, he will drink his formula in bed with me and then get on with whatever needs doing. Once this week, it was acting out an episode of Emmerdale where a caravan was on fire. Another time it was moving all the toys from his bedroom downstairs and all the toys from downstairs up to his bedroom. Another time he wanted me to list to him all the fonts that could be italicised. That is a hard one to do at 1.30am!!!

The main issue with being nocturnal is that you still have to do everything you need to do during the daytime. Children still have to get to school on time, housework needs to be done, the baby needs feeding. Once in a while, Thurston will fall asleep at school but for the main part, he is puzzlingly capable of staying awake up to 20 hours a day. Given the fact that he is on a limited diet and is anaemic, it just doesn’t make any sense!

Since the new year, I have tried to catch up on sleep as and when possible but it just really doesn’t work for me. I’ve tried going to bed for an hour in the afternoon and before 10pm at night, but it seems to just mess up my body clock even more and I struggle to get to sleep at all. The only way I can get to sleep is to fall into bed in an exhausted heap!

When Thurston’s sleep is going through a really bad patch, we try to only do what is essential. Simple dinners, minimal housework etc. It’s not realistic to keep this up all the time though. We still want to have fun as a family and we want to go out and enjoy our time together. We have dragged ourselves to LegoLand on a couple of hours’ sleep and forced ourselves to go to London for the day with nothing but black coffee for energy. Sometimes I’m so tired that I physically shake, and I’m not sure what I can do to make it better.

Sleep is such a simple thing but a lack of sleep can be all consuming. Having a new baby or being too hot to sleep can be bad enough. Having a child with a sleep disorder who cannot be left by himself is a whole new ballgame. I just need to find some new tactics!

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Linking up with The Ordinary Moments


Snatching moments with the older kids

Having a toddler can be all-consuming. You need to watch their every move. Nothing and nowhere is safe. Even though Indigo is our 4th baby and we consider our house to be very child friendly and baby proof, she still keeps us on our toes finding something new to ruin or eat that we hadn’t spotted! If you add the needs of an Autistic child to that, it can be easy for me to devote all my time to the youngest two of the family!



Louis and Zeke are aged 10 (11 in 4 weeks!) and 8 and are generally very independent. They are perfectly capable of occupying themselves and after school, they quite often disappear off to their shared bedroom and catch up on reading, YouTube and Lego! I do get worried that they will end up hibernating in that bedroom away from the rest of us, and I can understand it. Their belongings are safe in there away from the toddler or their brother who likes to think everything in the house is his! So far, I have stuck to my guns and not allowed them a TV in their bedroom or any games consoles. I am very against the idea of giving the boys anything that will make it easier for them to separate themselves off or be any more anti-social than tweenager boys already are!


Despite their grumbles, I do push them into spending time with us as often as possible. We have dinner at the table every day and I put it all out in serving bowls so that everyone helps themselves and it’s friendly and relaxed. They usually fill us in on the school gossip and what movies they are looking forward to seeing.


I’ve really enjoyed snatching a few moments alone with each of the older boys this week. Naturally, boys of this age are not very forthcoming with their feelings, but I feel like I’ve had some really lovely chats with them both.


Louis came down with a bit of a cold on Monday. In all honesty, he probably could have been pushed to make it in to school but he is so pale and scrawny and does such a good “poorly” face that he ended up scoring a sick day. Once the Calpol had kicked in and Indigo had gone for her nap, I ended up having a really great talk to Louis. He finds out what High School he goes to next month and I can really sense his anxiety around it. I vividly remember that nervous excitement of starting somewhere new and feeling so much more mature. He will be getting the bus everyday and making new friends. I don’t let him pick up on how much that freaks me out!! His group of friends is already drifting apart and settling into new groups of kids depending on which school they’ve applied for. He is definitely struggling that his best friend is almost certainly going to a Grammar school instead of a High school. Louis will do great though, I am sure of it. He is so confident, sensible, kind and other kids love him!


Zeke decided to stay at home while Alex took the others to the supermarket yesterday. It was so nice to listen to him without interruption. Lately, he has started to develop a bit of a stammer and mumbles and gets stressed. I’m sure this is because we rush them when they are talking to us because Thurston or Indigo are demanding our attention. This is something I really need to work on. Zeke has such an incredibly creative mind. He is fascinated by animation, stop-motion in particular. He also teaches himself puppetry and has a whole menagerie of Muppets and puppets that he can act with beautifully. He told me all about some new friends he’s made at school recently. He has made friends with a fellow puppet fanatic and together they have started a puppet club at school which they practice at lunchtime and perform to the class on a Friday! Another friend he made was new to the school and Zeke told me he could see he was lonely so he kept him company and now they are great friends. He also befriended a little boy who has a speech disorder and Zeke wanted to help him because he understands how that feels because of having Thurston for a brother. I was so proud to listen to how kind and considerate he is.


These moments weren’t anything amazing, they didn’t cost me any money and we didn’t go anywhere fancy. Yet the boys really appreciated the time I took to chat and listen to them. It seems so strange to me that my older boys are already at these stages in life where we are talking about High School and answering the phone to their friends! I don’t know how to raise anything beyond a toddler. I am just muddling my way through, and sometimes I think Louis can sense that. A lot of the time, Alex and I make decisions for the children that are very against the grain of what their friends do or have and it feels risky, but I hope that they can see we are just trying our best for them!


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