Living with Cerebral Palsy πŸ‹πŸ‹

Friday, 13 July 2018

A dedication.

Q. When is a 1:1 support worker not just a 1:1 support worker?
A. When she is a Lyn.
Next week Elin's support worker at school, Lyn, is retiring. She has been by Elin's side every single school day from 2012, following an awesome grounding by previous support workers Laura and Louisa and has been way more to Elin than 'just' a 1:1 support.  She has been her second Mummy. I can't imagine Elin going back to school in September without her, or rather I can, but I don't really want to because it just makes me cry. We know the rest of the staff at school are fantastic, there is not one person there who I wouldn't gladly hand Elin over to each morning, so Elin is still going to receive the very best care possible and will continue to thrive and have the most fun ever :-) But wow, are we going to miss Lyn.
If you are reading this and you have children in mainstream school you will think I'm nuts. It's just so impossible to fully articulate what having a good support worker for your child with special needs can mean. Along with the head, senior leaders and class teacher, a dedicated 1:1 support who really knows what they are doing can literally create an entirely different life for your child. This is what has happened for Elin in the years since she started school. Maybe my constant praise of the school might seem over the top if you haven't been in my position. It's just a school after all! Except it isn't. It's Elin's second home, it's the only place she goes to without us. She cannot tell us what kind of a day she's had or what she has done. The trust you have to put into the staff and school as a whole is immeasurable. I can't tell you how hard it would have been when she first started, had we not quickly realised just how good the school actually was. A school, though, is just bricks and mortar after all, it's the staff that make a school a home. It was the staff that impressed us most back then, in Elin's first few weeks of school- unwavering support, dedication, commitment and an unparalleled amount of knowledge about children with PMLD. Elin was, and has always been, in safer hands than we could ever have hoped for. So when you have a child with profound and complex needs like Elin it very quickly becomes really hard to see staff as 'just' a head teacher or 'just' class teachers or 'just' support workers, especially with Elin staying in the one class for her whole school career. Actually, they become like a family.
We have always had a combination of amazing staff at Elin's school and I've blogged about it more than once before. This particular post though, is dedicated to Lyn, who has been Elin's constant for six full years now- almost her whole time at school. She has been her rock, her support, her encouragement, her challenger, her carer, her nurse, her physiotherapist, her entertainer, her educator, her second Mum and most of all, her best friend.
It's impossible to give a proper thank you to someone who has cared for your child in your absence like you would. As I've said, obviously the trust involved in handing over your non-verbal, profoundly disabled, tube fed, medically precarious child to someone else for six hours a day is enormous and terrifying. Also, if you get the wrong relationship everything for both the family and the school can be very difficult. We are indebted to Elin's head teacher back in 2012 for pairing Lyn with our girl. It was a match made in heaven. From the word go Elin loved Lyn with all her heart and I think the feeling was mutual. Most importantly, Lyn, in addition to the love and the cuddles and the fun, has also has consistently refused to sit back and accept mediocrity where Elin's learning was concerned. She has pushed her way more than I would have thought possible, knowing what Elin was capable of. This has led Elin to achieve, over the years, the many targets set for her by her teacher and has made all of us prouder than we ever could have imagined. Lyn just has never, ever given up on her and believe me Elin can be really hard work-especially in the older, horrendously dystonic days. The girl we have now is completely and utterly different to the girl who first went to school aged two. She has improved in herself and is now doing things beyond what we ever could have wished for. A large chunk of this is down to Lyn. I can never thank her enough. But I'll try.
Thank you Lyn.
Thank you for being you. Thank you for your sense of humour, so matched with Elin's (and ours!) Thank you for being there, for constantly going the extra mile, for being so instinctively good at your job and thank you for saying (and meaning!) that you don't want or need thanks for doing your best for Elin. I hope you realise how you have improved her life. Thank you for being Elin's voice, her eyes and her hands and her safety net for the last six years. Thank you for the dignity you have always granted her and for being her ultimate champion and protector. I hope you know what you have given her and what you have done for her.
I hope you know what you have done for me.
As a massive bonus, you also became Elin's bus escort this past couple of years and this was a true blessing. She literally went from our arms to yours and back again. What a lucky girl she has been. What a lucky Mummy I have been.
I hope you enjoy the retirement you so deserve and I know this isn't the end of the story for you and our girl!
Thank you Lyn- my words will never be enough.
Elin and Lyn- Best friends forever :-)


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Sunday, 26 November 2017

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)
For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 
 
The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.
Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x
 
   
 
Xxxx


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