Tuesday, 25 January 2011

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

Friday, 21 January 2011

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 :)

Tuesday, 18 January 2011

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!!

Sunday, 16 January 2011

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

Tuesday, 11 January 2011

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.

Sunday, 9 January 2011

What a fantastic weekend!

This weekend has been just fab. We've all been pretty relaxed and enjoyed spending time and playing with Seth. Because I know he's been working hard during the week the pressure is off to have to make sure that I tick all of the physio and cognitive excercises. Although of course everything we do is educational play in some way, it didn't feel like work. The new gym we joined at the beginning of the year allows children into the swimming pool for a few hours so Craig and I took Seth this afternoon. It was actually one of the reasons we joined. It was great for Craig because he hasn't had a chance to swim with Seth before and Seth really enjoyed it even though it was pretty busy and not as warm as he was used to at school. There's definitely a change in Seth. He wakes up more alert and chatty and he's looking around even more, especially behind him. He seems to now be aware that there is a 'behind him' and is curious about it. I can't wait to see what next week brings.

Saturday night we went to a friends 30th birthday party. It was fancy dress. Craig and I went as Chewbacca and Scooby doo. We hadn't planned this but as soon as we saw the costumes the decision was made!
From Raising Seth

Saturday, 8 January 2011

1st week over

Well that was Seth's first week at school. he loved every morning (apparently he got very excited each morning when the children had their 'hello' circle and was obviously so happy to be there)and slept most of every afternoon! He had a lie in this morning but he still fell asleep in his chair once he had finished his lunch and he's now back in bed!!! I hope he doesn't sleep for too long because we do actually want to go out this afternoon!

I started my domestic goddess attempt this week as well. I cooked lasagna and soup and veg pasties and baked cup cakes, fairy cakes and madeira cake. I'm particularly proud of the veg pasties :) I also had a complete disaster. I attempted to make chocolate steamed pudding but because my bowl was too big for my saucepan it steamed all afternoon but the middle was still squidgy. I'm renowned for boiling saucepans dry and ruining them so I was very watchful and kept topping the water up. But by Seth's tea time I decided to turn up the heat and give it just another half hour - I was pretty sure it would still taste fab, squidgy or not. In that half hour it managed to boil dry and melt the bowl into the pudding and saucepan, ruining all three. I was so absorbed feeding Seth and watching a review of Toy Story 3 (it looks really good!) on the telly that I somehow never noticed the acrid smoke filling the kitchen. I was gutted. What a waste of effort and money! Plus I was really looking forward to eating it! This meant no pudding for Seth but luckily he fell asleep (again) so didn't miss it.

Wednesday, 5 January 2011

First day of school

So it was Seth's first day at pre-school today. Although he eats lunch there I have to provide the food, even snacks. So I've been baking.
From Raising Seth
And Seth went to school with his new school bag and lunch box
From Raising Seth
After a week of lie-ins it was a bit of shock for him to be woken up at 7.45 and out of the house by 8.30. I virtually force fed him his breakfast! Despite this he loved his first morning at school. I was fine taking him in until one of the teachers asked how I was. Then I was suddenly tearful; today has been a long time coming! I was worried how Seth would cope and half expected him to just sleep the morning away. But instead he didn't sleep at all and apparently really enjoyed himself. Oh, the relief knowing that he's actually being taught stuff and I can stop worrying about it. Today's timetable was maths and science. The maths involved getting Seth to hold a ball and count to 3 and then letting it go again. The science involved feel-y tactile play and making the first page of a book 'that's not my bear'. I'm so happy!

While Seth was at school I went to the gym Craig and I joined at the weekend. I had a health MOT-apparently I'm pretty fit(!) but my cholesterol is high and my hip to waist ratio is really bad (no surprises there!) then I went for a swim, jacuzzi and sauna. Ah bliss! I actually felt relaxed for a whole couple of minutes. Then I picked up Seth and he slept for most of the afternoon. I really hope he sleeps tonight, too!

Monday, 3 January 2011


I've just woken up from the strangest, loveliest dream. I don't know if it will make any sense but I'm going to try to retell it. Seth and I were at Fairfields School at the Conductive Education class. The class had become the stage of an auditorium and as we were doing the class I realised that people were silently coming in and sitting down. Some were strangers but some were my friends I remember seeing Lucy and Niall, Colette, Sarah C and Matt. I knew that they were there to watch and support Seth. For some reason the teacher had to leave the classroom and myself and the 2 other parents sat and waited for the class to continue. The teacher didn't return so I started to say to the other parents (who had now become 2 men who I didn't know) that perhaps we should just carry on ourselves when they laid down and started sort of caterpillar crawling sideways and their children copied them. A couple of people applauded and I just went back to Seth who was lying on his tummy, feeling bad because they just did it without talking to me, knowing that Seth can't do that. Seth's arm was lying awkwardly at his side so I moved it and he suddenly moved his hips and then head to inch along sideways. It was only a small move but he did it twice and was obviously attempting to copy the other children. All my friends in the audience saw it too and I woke up smiling.
See, weird but lovely. :)

For New Years Eve we finally made up our minds and went to our friends, Rachel and Paul, who had invited a couple of people over. It was a very chilled out night with good music, conversation and booze. We didn't leave til 2 and then only because I didn't want to feel too crap and knackered later. It was a shame because Craig would have preferred to stay-one of the few times he has totally relaxed and enjoyed himself since Seth was born. So, the argument we had once we were home aside (!), it was a great start to 2011.