end of term 1

So anyway it was the last day of school and I had just finished giving Seth his breakfast. & he completely kicked off. He was in a complete rage and I didn't know why. I fought him into his coat and carried him rigid into the car. & then I put his school bag on his lap. His bag is his 'object of reference' for school and so every morning after he's strapped into his car seat I hold the bag on his lap and tell him 'here's your school bag because you're going to school'. I wait for him to look at it before I can carry on. So yesterday, despite his screams, I doggedly held his school bag on his lap and said the magic words. & he stopped shouting. Instantly. It was completely amazing. I was worried that the thrill of school had dimmed and he didn't want to go. But obviously not! I think he was simply tired (it's good we've got a week to rest a little) but despite this he still clearly was happy to be going.

Anyway this morning Seth was very happy playing on daddy. It was so cool I video'd it. It's rubbish quality cos its from my mobile but it's still fab. Plus it's on it's side and I can't work out how to rotate it so you might get a cricked neck watching it!!!
Later that afternoon we were driving and we had Metallica cd playing. Seth was properly moshing in his car seat and we video'd that too!. Enjoy.

I'm still here

Seth is all good and we're all good but I got kind of sick of hearing my own voice so I'm taking a break until I've got something really interesting to say!

Hopeful Parents - The Anatomy of Swinging

This is a post from a blog that I follow and I just find it really uplifting. It shows how tenacity pays off.
Hopeful Parents - The Anatomy of Swinging

A bit of comfort eating

The car is ordered! I should get it 1st week of March and I'm very excited. It'll look like this:

From Raising Seth

You can't tell from this picture but it's huge - I'm a little daunted by it but when I did the test drive it was so easy to drive and it's got rear parking sensors so hopefully I'll be able to park it!!!

We now have a tray for Seth's wheelchair.

From Raising Seth

It'll make a big difference when we're out and about because I will be able to put sensory stuff on it and put meals on it. It had to be adjusted though because when the engineer tried to attach the tray we discovered that the company had measured it up wrong so didn't fit. So he had to drill more holes and move the screws. Plus the screws hadn't been recessed so stick out and are quite sharp so Seth could easily catch his finger on one. So this is just a temporary measure and another, properly made tray has been ordered (good grief!)

Yesterday I had another fit of baking and attempted a victoria sponge.

From Raising Seth

Yes it really is that flat - it didn't rise AT ALL. I still stuck jam in it and then preceded to work my way through it. Seth's only been at school 2 weeks but it feels longer and what with his poor sleeping pattern it really caught up with me yesterday. I'm not someone who is good with routine and the knowledge of the daily routine that is ahead of me started to depress me. When we decided to start a family I knew that kids did incur some routine but with Seth I am rigorous in repeating the getting up routine, the getting dressed routine, signing and using objects of reference etc etc. My skin used to literally crawl as I patiently fed Seth and tried to help him feed himself. I wanted to leap up and scream. Instead I have doggedly added more and more repetition as I've seen Seth respond to it. And I've gotten used to moving at Seth's pace and these routines are my way of expressing my love for Seth - giving him the best opportunity I can to pick up skills for eventual independence. But yesterday it just got to me a little. Plus what has been sustaining me is the plan to go to America this year on holiday. But after looking at the cost of flights I can't see it happening this year. Also, the realisation that now that Seth is at school (rather than private nursery) all of my annual leave from work will have to be used to cover the school holidays. So whereas before I could take off a day when Seth was at nursery and take some time for me (or sometimes Craig and I would take off a day together) that's not going to be possible anymore. That's hard to get my head around! I know that all parents must feel like this but that doesn't mean I have to like it! BUT THEN

I went to my new gym on the way home from work this evening. I did a 30 minute run (interspersed with walking!!) then (and I don't mean to rub this in readers) chilled out in the jacuzzi and sauna. & you know I'm feeling much better about everything!! I can take time out for myself and at least my money is going to some lovely things :)

sleep deprivation is back

Yesterday we had a consultation with Footsteps. They are in South Oxfordshire and offer 3 weeks intensive physio - two hours a day. One hour is standard mat work and then an hour is in 'the spider'.

From Raising Seth

The spider is basically bungee cords attached to a frame allowing the child to stand and move in a way they haven't been able to do before.
It did look very cool and I can understand that 3 weeks of intensive physio would have a very positive effect and it is very popular - all the sessions this year are fully booked with waiting lists. But we're not going to go ahead. Too damn expensive for one, although there are lots of reasons. I'm really glad we looked into it though.
I don't know if he got overexcited (he was was very excited!!) but when we went to bed last night past midnight, Seth was still very awake and talking away. He then woke up screaming at 2.30, then at 3.30 and then again at 6.30. He still only fell asleep for about 30 minutes this morning at school and didn't sleep at all this afternoon. He's like one of those Duracell bunnies - he just goes on and on. He's obviously so mentally stimulated which is fantastic but I think we will pay for that at night! I'm going to a seminar run by Cerebra - Understanding Sleep and Resolving Related Problems in Children with Disabilities - so I'm hoping to learn something useful!!

Peek a boo!

Yesterday morning Craig was feeding Seth his breakfast when Seth dropped his head down and became very still and silent. Craig obviously reacted with concern but after a few moments Seth lifted up his head grinning at his daddy. Then he dropped his head down again. He did this a few times and we think he was playing 'peek a boo' with Craig. He's done something similar in the past when being held; he'd bury his head in your shoulder and then lift his face up again - obviously we always played along and I think the game has been extended. Craig told me that the other night when he was putting Seth to bed and reading him a story Seth suddenly buried his head in the duvet and then looked back round at Craig, repeating it a few times. It's completely amazing to see Seth initiating play like this and I love watching the two of them together. Now that Seth is more responsive there is a relaxed, playful air about them.

From Raising Seth

Overzealous grandparents and shiny new cars

On Monday, Seth was collected from school by my parents. When Craig picked him up later he was informed that Seth had poo'd in a potty. That is pretty amazing as this is the first time he has used a potty. Apparently its really supportive with a high back and arm rests (a bit like a throne my mum described it as!) and as they noticed he was making the motions, as it were, they quickly sat him on it. & hey presto. All good. Except that they photo'd the poo in the potty and showed the photo to Craig. My parents are completely tapped but you can't fault them for proud grandparentsness. Craig suggested to me that I should post the photo and make a 'log blog'.

This morning between dropping Seth off at school and picking him up 4 and half hours later I've been rushing round to 3 different car dealers test driving cars. We were awarded the higher level disability living allowance 'for getting around' just before Christmas and since then I have been excitably trying out different cars under the Motability scheme. Today was supposed to be decision making day because it's still going to be up to 2 months before we'll get it and its very hard fitting in all of Seth's equipment in my car every day, especially as I'm insisting on him using his walker to get to and from class. I think I've decided on the Ford Grand C-Max (the Toyota Verso coming in a close 2nd) but typically the dealer I visited today didn't have the right model so I've got to go back Thursday to actually see it and make my final decision.