Living with Cerebral Palsy 🍋🍋

Sunday, 17 April 2016

Flying high

This is a pretty fantastic video of Elin taken at school, clearly showing her indicating that she wants 'more' of something. In this case, its more of the song 'Puff The Magic Dragon' please!!! Elin's support worker lets her listen for a while, then cuts out the music. She will only start it again once Elin 'shouts' for it (by vocalising as best she can). Not only can you see Elin 'singing' along to the song and visibly loving it, but (on the second time in particular) her facial expression changes INSTANTLY when the music is turned off. She waits, then clearly 'shouts' for it to be turned back on. Elin's support worker touches the side of her mouth to indicate to Elin that she is waiting for her to shout before she will turn the music back on.  I cannot express how it feels to see Elin communicating in this way, small as it may seem to those unaware of her journey. But she has travelled so very far under the expert guidance of her teacher and support worker at school. We are so  lucky that this multi sensory, individually tailored and specialist education is available to Elin. We will never cease to be grateful for what it has given her and what it has given us to see her grow, in a more tiny way than most ordinary experience would deem relevant but in a bigger way than we could ever have dreamed.
"Children with special needs are like a butterfly with a broken wing. They just need extra loving care to learn how to fly"
She definitely has the extra loving care.
Keep flying, Elin


Friday, 8 April 2016

April showers

Well, the Easter holidays are almost over (sob!) and Elin has had an equally good second week I am pleased to report! We have enjoyed such a lot of quality time together as a family we feel extremely lucky to have the same holidays as she does. It gives us that precious time with her and the luxury of not having to plan too far ahead- it means we can just see how she is each day and take everything from there. Her sleeping pattern hasn't been amazing, usual story for the school holidays ( the change in pace to a much more lazy routine just doesn't tire her out as much) so we have been getting up late and going to bed late. It is going to come as a shock to all of our systems to be up and out of the house by 8am next week! But that's what the holidays are for, right?
Anyway aside from lots of napping Elin has enjoyed several visits from friends, a few nice strolls in the sunshine and a trip to the Cinema. She also unfortunately had a trip to the doctors. The sore on her ear simply hasn't healed- and it's been aaaaages. We did everything we could to avoid oral antibiotics which never agree with her and usually set off her stomach on a very poor cycle which it can be hard to right, but in the end it has been the only option.Predictably it has had connotations for her bowel movements (tmi!) but so far this seems to be the only side effect. Hopefully it will abate as soon as we stop the short course.
This exact time last year we were in Disneyland Paris. I can't believe it's been a year. I'm also not giving up on the hope that we will get back there one day. But we cheered ourselves up by going to see the latest Disney film 'Zootropolis' today and we all loved it! Such a clever film with a great message of equality at it's heart and funny, too. Elin loved it!! I love how much she loves the Cinema. Just a shame she has not been for sitting in her chair these past couple of days, but so the endless cycle continues, we have had a good few days so we can't expect more than that.
I hope your Easter holidays have been as enjoyable as ours. I am finishing off the week with a Hen Night in Blackpool tomorrow-eeeek! 22 of us footloose and child-free. It could get messy. I'll let you know, if I don't die of alcohol poisoning before then. Until next time........

Elin enjoying a stroll in the village with her "ghetto blaster" as my Mum calls it. Seems to help a bit with distraction when she's not in the mood for sitting.
The eagle-eyed among you will notice Elin's new red rain mac (yes I know some of you Elin fans definitely notice these things!). The thing is, Elin has been sporting a gorgeous yellow mac for some time now which I have been insanely jealous of. Anyway, Topshop finally answered my prayers and are now stocking an adult version of said yellow mac. Well, of course I had to buy it. But this left me with a clashing issue (as in, I clashed/matched Elin when we went out.  Not a good look. I am sure Victoria Beckham and Harper can pull off matching outer-wear but Elin and I just looked a bit daft ) So what was the solution? Well, Elin would just have to have new mac too of course !!! Ha!! Needless to say Daddy Drake is bemused by the whole thing and thinks it's ridiculous but he is, after all, just a man and doesn't understand such issues so we just ignored him. She can still wear the yellow one to school I pointed out reasonably, but it fell on deaf ears. I think you'll agree it was worth every penny .....
Hee hee! New Drake Spring wear line came in very handy with all the April showers this week! Something else Elin has been up to other than parading her new mac around is playing...lots of playing. Talking Tom is still a huge favourite. I took this snap which I entitle 'cheeky face'. Caught in the act of some serious fun Miss Drake!! 
Sneaky cinema selfie. I get in for free when we go, as Elin's carer, so it actually works out a very cheap day out for us. Especially when Paul insists on buying snacks from Poundland before we go in as he's 'not paying those prices' !! He calls it sensible, I call it tight. Anyway we highly recommend 'Zootropolis' good fun was had by all :-)

Until next time Elin fans.........

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