Training Update for the ROSY Sponsored Walk

Today I walked to Seth's school and then, obviously, walked home with him. The round trip was 9 and a half miles and took just over 4 hours. Now I'm feeling quite stiff! I'm not sure if it's made me more or less confident about walking 16 miles on Saturday. But this is my plea for sponsorship to make the inevitable aches and pain worthwhile! Please go to our just giving page and donate. And thank you to those who have done so already.

Fundraising for ROSY

Next Saturday I'm doing a fundraising walk for ROSY which is a charity based in Oxfordshire providing respite nursing in the home for sick children, giving their parents a much needed break. The 30 mile walk will follow the Wychwood Way, which I've actually wanted to walk for a couple of years. I'm doing the walk with colleagues from work, Dan and Lowelle who are a wee bit fitter than me, for example, having completed the 3 peaks whilst I hadn't been to roller derby training since the summer and had to cancel my gym membership at Christmas! So I'm actually only doing half; walking until lunchtime which I am reliably informed will be just over the half way mark. So I'll still be doing about 16/17 miles.

I've been trying to train but it's a bit sporadic; last weekend I walked 7.5 miles and then last night I walked home from the pub, over 3 miles (that still counts, right?!).

So if you'd like to support our fundraising efforts, then please visit our just giving page and sponsor us.

Seth helps me train for my sponsored walk

My son is a quandary

Over the last 9 days there have been some truly amazing moments with Seth. Last Friday I swam with Seth at school. I never get to do this anymore due to working and it was very lucky that I could. Seth hasn't swum since well before Christmas (it keeps getting cancelled due to the lack of staff to support it) and it is such an essential element of Seth's timetable....but I digress. We swam and I loved it and he loved it. The really amazing moment was when the person running the class threw balls into the pool for the children to fetch. She held out Seth's first ball close to him and then threw it to his right. He turned his head to watch the ball fly past. Then she did it again to his left and he again followed it's progress. I was so excited! Then when we made our way to them he actually stretched his arm out a little and pushed them back to the side. He wasn't doing any of that when I last swam with him and I was very proud. I discovered that he had goals for the swimming lessons and he had just met 2 of them.

Then this Friday I picked Seth up from my parents. He was sitting on their sofa with a toy phone in front of him. You press the buttons and they light up and play music. He was actually hitting the buttons and activating it and having a real giggle. This was pretty cool in itself and quite a new thing. I wanted a cuddle so I picked up the toy and moved it to one side...and Seth actually watched the toy as it moved and then stared at it next to him. So I gave it back to him and he carried on playing with it. I've never seen Seth show that level of interest in anything other than food before. I was amazed; I moved a toy and Seth actually gave a damn.

Saturday morning was horse riding and I watched the people that walk with Seth hand him a little flag to carry. Let me explain; I watched them hold it out to him and he reached his hand slightly forward, opened his hand and closed his fist round it. It happened so casually and then they moved on. While I'm left standing there watching from the side needing to wipe tears away. Seth just doesn't normally extend his arms or open his hands to grasp things. He certainly has been doing it more recently but they are usually quite clumsy moves.

Then today I was giving him a drink. Because it is difficult for him to control fluids we only hold the bottle up to his mouth for very short periods at a time so he doesn't have a constant flow of liquid to choke on. So I keep asking him 'more?' and then he has to reach out and touch the bottle to indicate he wants more. After a while I though he might have had enough so I asked 'finished?'. Now this usually ends up as guesswork and I only know if he is because I take the drink away and he doesn't kick off. But today he signed 'finished'. He put the edges of his fists together. This is such an unfamiliar gesture for him that it was very clear what he was doing. Plus to confirm it he wasn't bothered when his drink was put away.

All this in less than 2 weeks. I am blown away by everything Seth is doing. The reason he is a quandary? Because in between these flashes of brilliance he mostly communicates his wishes by throwing a crying and shouting fit and I usually have no idea what it is he wants. It drives me crazy and yet.....Friday he calmly shows me how he wants to continue playing with a toy and today he signs for the very first time he's finished with this drink.

That's my duck

I've been reading Seth 'this is my duck' for a couple of years now; it's a touchy-feely book with a button to press at the end of each page for the duck to say 'quack, quack'.

Seth has enjoyed the book but has struggled to locate and press the button. Then I attended a speech and language coffee morning at Seth's school and they talked about using recordable buttons like the 'Big Mac' that we've got to record a repetitive element of a story or song so a non verbal child can participate.

So I recorded Craig saying 'quack quack' and offered Seth the large button when I got to that part of the story. And he got it straight away. That was a couple of weeks ago and it's now a great game. He'll press it with his hand or forearm consistently through most of the story until he laughs so much he distracts himself.

Chickenpox

Seth has had chickenpox all week. It seemed to hit him bad; he's been simply covered with spots and has been really miserable with it.

Days like this I turn into a crazy person

I'm standing at my kitchen window staring out at the beautiful snow, wishing I could have been out in it and conscious that I am at the furthest point in the house from Seth without actually going outside.

Some days Seth will happily sit and play with me and be full of giggles. Other days he just wants space to chill. But today was one of those other types of days when he doesn't want to do anything. He will protest as soon as you put a toy or book in front of him, if I try a cuddle he will wriggle off my lap onto his feet but then collapses and won't take his weight and stand straight. If I leave him on the floor he bangs his head on the floor and if he falls asleep he wakes up screaming.

I did insist on us going out into the garden. I wrapped Seth in 3 layers, put on his wellies, waterproof trousers and coat, hat and gloves. He enjoyed bouncing and crunching snow for a whole 5 minutes before wanting to be picked up. I considered my options before just going back indoors. He did look very cute though

Snow

Well the weather this weekend has stopped all my social plans which is very annoying and caused me to spend 2 hours driving what should have been a 20 minute journey to pick Seth up from school which really sucked. However, it is very pretty!

We are well and truly settled in; today I hung the last curtains and it's very cosy. Seth has his bedroom and his own shower room downstairs. Although my first attempts at showering ended not only in disaster but seems to have given him a phobia of the sound of running water because Seth now starts screaming when we run his bath. So I've really messed that up. I think I'll wait til the weather gets warmer before trying again. On the bright side its shown me that Seth recognises things very quickly, given the way he reacted to the shower the 2nd time I tried to put him in it!