Daniel’s Sleep is Awful at the Moment, But he is Still Chirpy!

Well my little Daniel has had a fun and busy week. He has been very chirpy during the day, with lots of running up and down the living room smiling and cuddling his teddy bear. He has also continued to enjoy going out in the garden quite a bit. But his sleep is terrible at the moment! We have resorted to breaking out the Melatonin again to try and maintain some sanity in the household. Daniel was sleeping so little that he was waking up in the morning with what looked like two black eyes where he was so tired, bless him. And he will never sleep during the day. No matter how tired he may be. The only way I can ever get Daniel to sleep in the day is if we go out for the day he sometimes may doze off in the back of the car on the way home. But not for long. So he has been on the Melatonin (sleep hormone) again this week. It does help with getting him off to sleep. He goes off quite quick now. But as the synthetic hormone does not stay in the body long, Daniel has been waking up again around 11pm and staying awake until up to 3am. He has been head banging and moaning and crying. There is nothing more lonely than laying in your bed at 2am listening to your beloved child head banging and moaning in his bedroom, banging his head repeatedly against the head of the cot or the side of the cot. It is so sad. I go in to Daniel, give him a cuddle. Offer him some milk. Sometimes he will drink a whole bottle of milk. Other times he does not want anything and I just have to leave him. Then he wakes at about 930 in the morning after a good lay-in to catch up on his rest!! He often wakes his little bro Matty up as well, and if Matty is awake, then he wants milk!! He is a piggy and he eats/drinks for England!! So nights are a bit busy in our house at the moment, and I am desperately hoping they may get calmer soon!! But never mind. Bless.

Daniel has been increasingly interested in going out in the garden whenever he gets the opportunity. And his little bro Matty loves it out there! Even more opportunities to find mischief!! We had a very funny suprise in our garden yesterday tea time when we went out with the boys for a little play time. We have been doing some work in the garden and painting the inside of the summerhouse amongst other things. As the weather is nice and warm at the moment I have been leaving the windows of the summerhouse open to air it a bit. We were busy trying to stop Matthew clambering round the back of the summerhouse where there are a few hazards, and there was a strange noise coming from inside it. I stepped up and peered in the windows. And there, on my nice comfy padded armchairs, were four eyes looking back at me!! Next door’s bl**dy two fluffy black cats had moved in!! Cheeky things!! There they were, bold as brass, all comfy, and had obviously been in there a while – judging by how much cat hair they left behind! So now, needless to say, I only leave the windows open a crack so they can’t fit. And the funny thing is I watched one of them from my kitchen window this morning, desperately trying to work out why he could fit in yesterday and can’t today!!

Whilst all this hilarity was going on, Daniel loves clambering round the garden, just looking at things. He gets really excited when a bird flies overhead and comes up to you stating ‘bird’, ‘bird’, ‘bird’!!! He gets all pleased with himself. The unfortunate thing is that our garden is very uneven and on a rather steep incline, and with Daniel being so wobbly on his legs, he often stumbles and falls, and chooses the stability of all fours over trying to walk. It is so sad to see how weak and unsure he is with his walking. We would love to get the garden landscaped and have some decent turf laid. We have recently got a couple of quotes but it is very expensive work!! Our trouble is we also have a pond, and of course, it would be best if we got rid of that to be safe for the boys, but it is quite big and I think a lot of work will be involved. So will have to watch this space.

Daniel has been really cute lately, coming up for big cuddles for no reason, and enjoying lots of tickles and singing songs. He loves singing Five Little Men in a Flying Saucer, and he does the ‘whooosh’ at the end and he laughs!! It’s great. He has been going out in the garden at nursery and playing in the water tables. And amazingly, for the first time ever, he has been on their slide!! This is HUGE!! I know the slide is only a wee one, but even so. Daniel has always shied away from swings and slides. He hates the sensation of losing his balance and being tipped backwards etc. It is something we have been working on with the Occupational Therapist. It would now appear that some of that work has paid off, as he now has had the confidence to give the slide a go. I was almost in tears when his one-to-one support worker at nursery told me he had been on the slide. I thought she was mistaken. So she showed me. She led Daniel over, and helped him climb to the top. Then she said ‘Ready’. And Daniel said ‘Steady, Go!!’ and off he went! It was a wonderful moment to cherish. Really special.

I missed my boys on Saturday. I drove up to Manchester on Friday night to attend a conference on Saturday run by NCYPE surrounding issues in Childhood Epilepsy. I had a stand there to represent The LIME Magazine. I enjoyed the conference. I found it very interesting. I attended a couple of talks. One about how the disability affects the child. One about how the disability affects the sibling(s). I met some wonderful people. I met key members of related charities who are doing wonderful work in the field of special needs in children. They were very inspiring and have indeed been helpful in giving me some tips on what things I need to be doing in order to assure success for my own charitable organisation ICT4Autism and other Neurological Disorders. The downside of attending this conference though, was that whilst in the outside lane of the M42 north of Heathrow Airport (so still a very long way from home), my rear tyre blew!! Not what you want to happen. Thank God for Run Flats on BMW!! I heard the bang. But nothing happened at first. Never felt a thing. Not even a slight wiggle. Then the warning symbol came up. So I had to drive the rest of the journey home, probably a good 150 miles, at 45mph in the inside lane of all the major motorways, being overtaken by HGVs left right and centre!! It was so gutty!! I was so tired and desperate to get home. But at least my nice safe car got me home eh? So I am here to tell the tale. Maybe next time I will fly!!

Well, I think it is now time to relax. I may be in for another rough night with the boys tonight, as neither of them had much milk at bedtime, which means they will wake up for it in the middle of the night!! Lucky me!!

Oh, and one more piece of news. I have been nominated Best Start Up in the 2010 Mumpreneur Awards for the work I have done with The LIME Magazine for Parents of Children with Special Needs!

Good night all. Many thanks for all your support.


www.limemag.co.uk and www.digbyandsprout.co.uk and www.ict4autism.org