Living with Cerebral Palsy 🍋🍋

Thursday, 20 July 2017

Nine things I would tell myself on the day Elin was born.

Happy 9th Birthday to Elin!!
 Needless to say it's going to be an emotional weekend. I've been thinking about how utterly terrified I was on the day Elin was born in 2008 and in the days/weeks/months that followed. How nothing seemed like it would ever be the same again. I really, really wish I could hop into the Tardis and go back and give my 26 year-old self some advice. So that's what this post is, nine things on Elin's ninth birthday that I would tell myself as I sat by her cot in Special Care.
Nine practical things I wish I'd known, that may have helped, just a little.
Everything will be ok.

What happened to Elin during her birth was completely and utterly, categorically100% not your fault.

When you get home things will not magically become ok. Getting Elin home from Special Care is not the end, it's only the beginning. It will take months before you even start feeling anywhere close to 'normal' again. Don't pressurise yourself to bounce back. Don't pressurise yourself to do anything. 

Don’t feel obliged to see your Mum friends and their babies. They will be incredibly kind but cannot possibly understand what you are going through in their warm and fuzzy glow. The milestones their babies are hitting are too painful to watch as Elin lies like a beautiful and precious china doll in your arms.  Instead get in touch with another Mummy in your position. There will be nothing more invaluable to you than another Mum who understands your emotions-all seven hundred of them- without you having to say a word. Anybody else will still be there when you are ready.

Ask for help. Ask for people to bring you cooked meals, let your mum do your washing when she offers. Stop trying to be brave. Nobody expects it. Cry as often as you like. Get counselling, its not shameful or weak, its there to help. 

Don’t be sorry when you see that older child with severe disabilities. Don’t be heartbroken and terrified that the girl with the floppy body, flailing limbs and adult bib will one day be Elin. Because when one day that IS Elin, that is not what you will see when you pass another child like this. You will see her amazing sunny smile, it will make you smile, too. You'll see  the laughter at her Mum’s voice and the unmistakable bond between them as she sings her a favourite song. You will be thrilled with how strong she looks and how well she seems. You will exchange a knowing glance of solidarity with the Mum pushing the chair looking back at you.  There will be a world of pain and exhaustion but mostly immense joy and gratitude in that one glance. You are united in a special club, the secret club only a handful of parents will ever understand, of what it’s like to raise your amazing, wonderful, loving, incredible severely disabled children. Pity will not even enter your head.

You will experience more compassion, kindness, love and understanding from your family, your friends, work colleagues, acquaintances and even complete strangers than you ever thought possible. You will realise the world is not always a bad place. You will see the goodness in people’s hearts in how they respond to Elin and you will count your lucky stars every day for those that surround you. These people will save your life without ever even knowing it.

 One day, when the pain has ebbed away, when the memories and trauma of this day have faded, when your tears have dried up, when Elin has settled into a life, when there are fewer hospital appointments, when has been seizure free for eighteen months, when she goes to a school she loves and is happy every single day, when smiling is the very first thing she does after opening her eyes, you will be lighting a number ‘9’  candle on her birthday cake, incredulous that you got this far and you will feel like the luckiest Mummy on earth. I promise.

 Everything will be ok. There's nothing to be scared of. Actually, everything will be more than ok.

It will be kind of wonderful.

      Happy Birthday Elin 

Monday, 17 July 2017

A letter to my daughter...

I don't know why I didn't share this on here when it was published. I had something published in the Guardian, I should be photocopying the hard copy I gleefully bought from the paper shop and wallpapering my downstairs toilet with it!  Perhaps I felt like it would be bragging or maybe I felt slightly fraudulent because this letter was inspired by a previous blog post I had written which you may have already read. Perhaps I worry way too much about what people think, and when something-anything-I write gets published in the Guardian I should stop being so stupid and find a great big trumpet and blow it to my hearts content.
Well, better late than never! This was shared via The Guardian's Facebook page over 600 times and via The Guardian's own website 1,382 times so far.  I VERY tentatively read the comments under the post on their Facebook and can't believe how warm, understanding and positive they were. Lots of other mums chose to share their own experiences too. It felt like an honour to have inspired any kind of Saturday morning chat about what it's like raising a disabled child, even more so because of the positivity that surrounded it. No internet trolls under the bridge of publication this time. Phew.
I can finally say I'm quite proud of this (even though there are bits I want to add/edit/change because it wouldn't be me if I didn't- I found the word count particularly hard to stick to) and though I am aware the point of this regular 'A letter to.....' section is anonymity, I decided to let the Editor publish Elin's name in the last line (he called me to make sure it was ok) because I felt naming Elin would make it more real and give her story more impact.
Anyway, here it is. I promise if there is ever a next time  I will shout it from the rooftops. The week of Elin's birthday seems like a good time to share, as it always makes me quite reflective.
Hope you enjoy
Ruth x

Friday, 7 July 2017

Why I love Elin's school

Recently Elin came home from school with a photo which reminded me of just how much I love her school. Having a local school like hers is just a crazy stroke of good fortune. It's the sort of school that, if you have a child with PMLD, you'd be getting on 'Right Move' and looking to up sticks just so that your child could attend. So we are enormously grateful that it just happens to be in our town and that Elin was enrolled at two and a half years old.
Regular readers of the blog will know that I have waxed lyrical about the school many times in the past. It's hard to describe what they have provided over the years for Elin with their ethos of inclusion and high standards of education. Each child, regardless of ability, is fought for, nurtured, encouraged, developed, taught and most importantly, loved.  This ethos was initially created by one of the most dedicated champions of the rights and needs of children with PMLD in education as you are ever likely to meet. Wendy Jones, the Head of Elin's school until her retirement last year, quite literally created (down to designing the new building of the school herself a few years ago to suit the children in the best way possible) a place where children like Elin could flourish and never ever be seen as less able, less important, less in any way. She spent her whole career cultivating a place of equal rights, of celebrating children with severe disabilities, of pushing boundaries and making children the best they could be. In fact, the school's motto is 'Working together to be the best we can be'. The Head accepted nothing less than excellence when it came to the teaching of her children at the school and we parents observed nothing less than excellence as a result. The staff too are amazing and if you ever want to see the epitome of 'Teamwork' just pay them a visit. It is not a school, it is a family. In addition to the outstanding teachers (that's official, ask the Estyn inspectors) there is an army of teaching assistants, each one assigned as a key worker for every child, each one like a personal guardian angel. The work they do day in, day out on a 1:1 basis with the children is sometimes incredibly difficult for them but always beyond compare. We joke about Elin's key worker being her second Mum. But when you consider the hours Elin spends at school every week, she actually is. There's nobody we'd rather hand the reigns over to outside of family for six hours a day in terms of caring for our girl.  It's little wonder to me that years ago the school became widely regarded in the circles of special needs education as a centre of excellence and somewhere that people came to observe good practice from all over Wales (and probably further).  The Head of the mainstream part of the school, Mrs Thomas, has also for years and years worked equally hard to create an excellent and revered environment for learning. She values and has carefully fostered the partnership with the special needs unit above anyone's expectations. This part of the school, too, has been named as outstanding and rightly so. Along with the incredible senior management team Mrs Thomas is just as dedicated as ever to maintaining this reputation and continuing to work in the very best interests of the children, since the sad retirement of Wendy last year. I would like to say this is the 'norm' for special needs school's but I know for a fact it isn't, though of course it should be. We know how lucky we are.
One of the most important things the school holds dear is inclusion. I have blogged about this before. The Christmas concert and Sports Day being examples of when I have seen it in action (find my post about the Christmas concert and the why I love the relationship between the children here). But the truth is there is a dedication to inclusion that runs through each working week at Elin 's school. I have been frequently told that the children from mainstream have been desperate to come and play with Elin. I know that sometimes in the past coming to play with Elin has been a chosen 'Golden Time' reward. These children are CHOOSING to play with Elin in their own time. The staff encourage the friendships as equal, in no way are the children like Elin seen as people they should feel sorry for. They get as much out of playing with Elin as she does. It's not even a big deal to them.
But it's a massive deal to us.
The nature of Elin's school is that the children in her class are not really able to interact in the usual way with one another. Although they clearly enjoy being around each other and regularly take part in activities together, most are non-verbal. This means that Elin only hears adult voices. She only really 'plays' with adults. That is until the children from mainstream come in. Children bring with them an energy, an innocence, an exuberance that Elin absolutely thrives off. If it wasn't for these kids she would be missing out on that. But in the true style of her school they won't have her missing out on anything. So along they come, reading to her, talking to her, playing with her. She is just one of them.
It's difficult to describe how this makes you feel as a parent. We all know the benefits of inclusion for children, it goes without saying. But nobody talks about the benefits for the parents. That we get to see Elin doing exactly the same as the other children. That she doesn't need to sit out of Sport's Day, that I can proudly show off the Sport's Day photo's like all my Mum friends. That she is not segregated by the fact she has wheels where her feet should be. She is in the school play and her class are taking part in the careers day, or the World book Day fancy dress, or taking part in imaginative play together, or the fun day at the end of term.
How can you explain what that means, as a Mum? Something that really upset me when she was a tiny two year old going off to Nursery was that everything I knew about primary school would be 'different' for Elin. Everything would feel 'alien' and she wouldn't get to do all the things my friend's kids were doing, the things I did when I was young, the things I was doing with my classes as a teacher myself.  But it turns out I was wrong and I can't explain how happy I am that I was wrong. Elin hasn't missed out on a single thing. I can't say anything meaningful enough to convey what Elin's attendance at this school has meant to us over the years. Her inclusion and her worth there. But I can say thank you.
Thank you for working together as a school to give my daughter moments like this, which make us cry when we see the photo in her home school diary because it's just so wonderful. Not only for her, but for us too. Look at the faces of these lovely boys during a "Grease" dress up afternoon-they are so proud to be with Elin! There is zero pity there. I've been told that one of them in particular has been her friend since they were tiny, actively seeking her out to 'look after' during shared school time.You see, when we see photograph's like this, we just don't feel so very different. We feel included.

***EDIT***  Before publishing this blog, I wrote to Mrs Thomas to ask permission to use the above photograph. In a move that typifies the thoughtful attitude of the school, I did not just receive a letter or phone call back from her. I received a phone call from all four boys pictured. As they took it in turns to come onto the phone and speak to me an EXTREMELY large lump formed in my throat! They told me that they would be 'very happy' for their photo to be used in my blog. They said they were proud to know Elin, that they felt lucky to be part of such a school, that they looked forward to visiting Elin and her friends. Playing with Elin and the other children is one of their favourite things to do at school they told me. One boy said, and this is a direct quote 'When I see Elin her smile just brightens up my day'. 
Her smile brightens up our day, too.
Thank you.

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