Things I would say to parents of kids with Cerebral Palsy

Let me kick this post off by saying that I know I am probably the least qualified person to be writing this – I’m not a parent, and I’ll be totally honest and say that, at present, I have no desire to be. I know this might change for me in future and if it does then that’s okay, but for now I think I’m far happier with the idea of getting to be the family friend that buys all the noisy, messy toys at Christmas. But anyway, I digress.

I’ve been toying with the idea or writing this post for a while, but I didn’t want to offend any parents by writing an ‘advice’ post when I can’t even imagine what it’s like to be in their position. I’m also not a medical professional; I’m just your average 23 year-old who happens to have Cerebral Palsy herself. I know that no two people are ever the same, and so CP effects people differently so this isn’t going to be a post about therapy or anything like that. I wanted it to be something that I hoped would lift your spirits on a bad day, even though I’m still not sure that I’d be capable of doing that. But I still couldn’t shake the feeling that I wanted to write this post. So, I did what I usually do when I find myself in a dilemma, and talked to my Mum. She told me to just to go for it. So without further adieu, here is my list of advice for parents of kids with Cerebral Palsy, in no particular order:

Never underestimate your child

Never, ever underestimate what your child can and might be able to do one day, because, I promise you they will defy expectations every single day. It might not be yours that they defy every day, but they will astound someone somewhere at least once a day.

I know it’s hard – this part is still hard for me too – but if someone comes up to you in the street and tells you “aw, isn’t your child doing well,” please try and take this as a compliment rather than as them saying this because they don’t know what else to say. They’re most probably saying it because they mean it and they applaud the efforts that you and your child are putting in to be able to do whatever it is that they are doing well. Believe me there’ll be enough people waiting to criticise you, or tell you what they think you should be doing, so please take the compliments of others as a victory whenever they come around.

Never underestimate how much you have helped your child –even though I’m not sure you’ll ever appreciate how much you have

I am always the first person to stand up and say that I would not be where I am today if it was not for the unconditional love and support of my mum and dad. Where others have doubted me or written me off on occasion, they haven’t. And I love them for it. They helped me so much and they know that. They remember all the things they did to help me that I’m too young to recall. I’m old enough now understand just how much that means to me on a personal level, and I’m not sure my folks will ever be able to comprehend even if I try to explain it. They are the ones that helped me discover my fighting streak and lit the fire in my belly that means I want to keep pushing and never give up. I want to keep fighting their good fight, and it’s because they fought so hard in the first place that makes me want to continue.

You are not alone

You are not alone. You do not have to go through this alone. There will be people out there who want to try and understand. Your family, friends, medical professionals. They will want to join you and help you and your child. It can be easy to feel like you’re alone, but these people are out there somewhere. You just have to work out who they are and let them in. Please let them in.

It’s okay to take time for yourself

Please don’t ever feel guilty about wanting a little me time now and then to rest and recharge. The first time I remember my mum going away for a weekend with some of her friends, my dad and I had a wonderful time. He made sure that I had so much fun and tried to keep my mind off missing my mum as much as he could. He took my for my first ever cinema trip, it was to see Disney’s Pocahontas, and we put up the Christmas decorations as a surprise for my mum when she got home.

It’s okay to be sad

When I was younger I used to think that I couldn’t be sad about the things that I couldn’t do because that was just something I had to accept about my CP. I used to think I wasn’t allowed to be sad that I couldn’t go ice skating with my friends or climb trees, but as I got a bit older I realised it was okay to be sad sometimes, it was okay to cry sometimes, as long as I turned that into motivation to keep going and try to learn to do more things.

I’ve said over and over again that I consider myself to be lucky, and I know that I am. I don’t hate my disability; in fact I think it’s had a positive impact on my life in a lot of ways. I still get frustrated sometimes when something doesn’t come easily, and then I often feel like I’ve let myself down for feeling that way. But, I’m only human so I know that this is okay. I just use these emotions as drive to keep going when I feel like it’s all getting a bit much.

Never, ever give up

Enough said.

It might not feel like it right now, but together you can achieve great things

My parents and I am my graduation
My parents and I am my graduation

Park life

On my recent  trip to London, I mentioned that my family, (especially my little sister), all helped me have a tonne of fun in the park and I have to say I think it was the highlight of my trip. I’ve been looking forward to writing this post for a long time, but because I’ve had so many appointments and other things going on to tell you all about, it’s had to wait a while.

Parks were a big part of my childhood for a long time. My mum abd dad would put up my walking frame and then we’d all walk to one of our local parks as a family. They’d help me play on things and make sure I didn’t hurt myself, (little did I know that I was also doing some form of physio in the process), and then we’d all walk home again. I’d often find this tiring, but it was so much fun that I didn’t care.

Fastforward quite a few years and playing in the park is something I don’t really do anymore, although I’m quite small and light so I can still do it if I want to, but I often worry about all the ways I can get hurt instead.

However, as soon as we got to this park in London my little sister wasted no time in pushing me really fast in my wheelchair up and down all the humps that I think are meant for people with bikes, scooters and other such things. Although I pretended I wasn’t too happy about this, I secretly had fun and some of the other people in the park were smiling and laughing along with us, which made it even nicer.

Then she asked me if I wanted to go on the swing with her. Of course, I said yes. The swing in question was a flying-saucer shaped one that you could sit in, so my mum’s new husband-to-be lifted me into it, and then my sister climbed in with me so she could make sure I didn’t fall out.

 

My sister and I on the swing
My sister and I on the swing

After that I climbed back into my wheelchair and she jokingly asked me if I wanted a go on the zipwire. I don’t think I’d be able to hold myself on a zipwire as it went flying through the air, but she said that if someone helped me get onto it she’d hold on to me while I sat on it while it wasn’t moving. I was having lots of fun and, not wanting to spoil it, I agreed.

On the zipwire
On the zipwire

I’d like to think that all of us were having fun by this point. Back into the wheelchair I went and my mum  started to push. She pointed to some bits of wood that were set out at different heights for people to walk on and she said she’d help me. I’ve written a post that introduced you all to my dad before, but now I’d also like to introduce you all to my mum too.

My mum and I
My mum and I

By this point I was feeling really adventurous so when mum’s husband-to-be pointed to some ropes that people could use to pull themselves up a grass hill with and asked me if I fancied a go there was no doubt that I did. He stood behind me every step of the way waiting to catch me if I fell. Mum stayed at the bottom with the camera, and my sister waited for me at the top and cheered me on. Sorry that my eyes are closed in the picture, but I think you get the point.

100_0110
Just getting started

It was hard. Really, really hard. My arms and legs ached all the way but I never once doubted that I’d make it to the top, no matter how long it took. Unfortunately, I didn’t time it, so I don’t know how long it did take me, but I did make it to the top. I made it! I was pretty proud of myself for it too.

Victory!
Victory!

And to think, my parents were told I might be able to manage to walk around a supermarket at the best…

Dancing with myself

In case you haven’t guessed by now, I love to dance. I’ll do it anywhere; at a family wedding in my room alone or in the middle of a park. If I’m out in public most of the time I do it sitting down in my wheelchair so that I don’t fall over or get knocked over by other people around me. If I’m somewhere that’s quite quiet I might have a go at doing it with Martha instead but that’s much harder.

If I’m in my wheelchair I sometimes attempt to roll my wheels around in time to the music but more often than not I tend to just go for moving my arms around in motions that I hope will match the music and try and avoid spotting my own reflection anywhere. I know that what I’m doing probably has no sense of rhythm to it but I like to pretend it does. Dancing with Martha is not quite as simple, I have to still hold on ad try and shuffle my feet and try and shake my shoulders at the same time. It’s not easy and I’d like to get better at it, I just need the space and time to practice.

The thing is, I’ve always loved bopping along to a good song. I’d always be begging my Mum to help me on the dance floor when I went to parties as a kid, I never even cared that I would be the only one up there. It was fun and that was all that mattered to me. It was always a part of family life when I was growing up. Mum and I would often dance around the kitchen and call it phsyio and Dad spent ages teaching me to strut my stuff to Madness songs like they do in the One Step Beyond video.

My friends often embrace my danc-y nature too. If we’re ever out and about somewhere and Rollin’ by Limp Bizket starts playing, the person closest to me will grab my chair and push me along in time to the chorus. Makes me laugh every time.

Now, I do often wonder what I must look like to people who don’t know me but I try not think about that too much and just enjoy the music. That’s what it’s all about, right?

So, what music will get you all moving today?