Misjudged purchases

I had some money that had been sent at Christmas for Seth and I'd been waiting for something to spend it on. Having gone to Kidz in the middle exhibition, which was great by the way, I was armed with catalogues filled with goodies. After lots of thought, and a phone call to the company to discuss it I chose a switch and an adapter. I had considered getting one of the switch adapted toys but instead got the adaptor because that meant I could use the button with any battery operated toy which are cheaper plus get greater use out of it. The point of the switch is that its big, red and quite flat so Seth can press it to activate a toy.

Only it hasn't worked as successfully as I'd hoped. The Christmas money only bought the button and adaptor so I still needed the toy. One of the pre adapted toys the company sold was a car that made lots of noise, flashed its lights and then moved forward a bit. So I bought the mainstream alternative. When it all arrived I was very excited, feeling very clever. The switch connects to the adapter and I then attempted to fit the adapter into the battery compartment of the toy. The rather flimsy piece of metal snapped. After a call to the company I got a replacement but then discovered that it still wasn't going to work... The adapter works by breaking the connection of the battery to the toy so once you've turned it on you control the toy by pressing the switch.

However with his toy, turning it on isn't enough.  You press on the driver's head to actually make it work and so you'd have to do this as well as pressing the switch. Having gone through Seth's toy boxes we don't have any battery operated toys that don't need something else pressing on them to make them work! So my adapter is useless until I buy another toy that works in that very specific way.

Plus the car toy is pretty glitchy in that you have to press down on its head in quite a specific way to make it work, something Seth's non existent fine motor skills are not up to....its why we need the switch! So I now have a switch that I can't use with anything and a new toy that's pretty useless; I'm so glad I waited so carefully before spending his Christmas money.

I will be trying to return the toy or at least sell on and then I'll go down the pre-adapted route! Long term I am confident that the switch will prove to have been a good idea (!)

Sore feet but good conversation

So yesterday I completed my sponsored walk. I ended up doing almost 19 miles, according to my pedometer so I'm pretty proud of that. I was of course in the group that got lost but it was such a beautiful day and I met some lovely people.

I discovered that Lady Tania Rotherwick, who owns Cornbury Park where the walk began, discovered the ROSY charity after her child was born with severe difficulties and she realised how difficult it was to find the nursing support at home. She has been supporting and fundraising for this little charity ever since, enabling it to grow and increase the number of nurses and services it provides.

I met another lady whose child had a difficult birth, similarly to Seth, but his was more profound causing hearing and sight loss, among many other things. In his short life the charity was a great support and on the walk she, along with family and friends, wore matching t-shirts sporting her son's photo.

Now the charity not only provides that respite nursing care but also equipment to loan out to families going on holiday, such as mobile changing tables. So I'm very pleased that I was able to support it, even though I am typing this with a packet of frozen peas strapped to my ankle! My team and I raised £650 the last time I checked so thank you to anyone who sponsored me.

The photos below are the team just before we set off and then me as we entered the grounds of Bletchley Palace, just a few short miles to go.

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.