Author: Nicola Golding

My name is Nic, I'm 26 and just happen to have Cerebral Palsy that I've had since birth. It mostly impacts on my legs and my left arm and so I use a walking frame. When I'm not blogging I can usually be found making YouTube videos, reading or trying to write a novel.

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

Bittersweet memories

Before I had my surgery on my hips and legs a few years ago, I also used to get a lot of pain in my shoulders too. This was caused by my posture. They hurt every day and the bones would ‘crack’ all the time which wasn’t very nice either. Some nights I couldn’t lie on one side because it was too uncomfortable. It’s not something I’d care to go through again if I’m being truthful.

At the time, my knees had rotated inwards thanks to the way I stood, to the point where they practically faced each other rather than facing outwards, so I had operations in which they broke my hips and one of the bones in my legs and reset them to correct this. Then I had another operation to lengthen all the muscles in my legs.

I’m pleased to say that after that the pain in my shoulders stopped and they haven’t really bothered me all that much since. Well, not unless I have quite a long day pulling my walking frame Martha around or decide to bring home one too many books from the library, which I hang in a carrier bag that I put over the side of Martha so that I don’t have to carry them in my handbag and get backache. I was guilty of probably taking out a stack of heavy books yesterday actually, but thankfully my dad was on hand to give me lift home so it saved my shoulders a lot of work. Thanks Dad!

But there is another reason for me writing this post today besides confessing that I am a bookworm who is often guilty of checking out more books that she can comfortably carry sometimes. Please tell me some of you have done that too and that it’s not just me!

Sometime last week I was laying on my tummy, which I personally find is a way for me to get a good stretch, because my legs and back were quite achy that day. I moved my arm to put it in a more comfortable position and I could instantly I’d done something that my shoulder wasn’t happy about because it ‘cracked’ and started aching right away.

Thankfully, the achiness is starting to subside now, but having discomfort in my shoulders again has brought back memories of how I used to be in the days before I had my surgery.

Although it hasn’t been nice to think about how much my shoulders hurt, it’s been quite nice to take some time to reflect and think about how far I’ve come over the last few years, which I think is actually further than I realise most days and definitely further than I give myself credit for.

Let’s hope it continues!

The ‘down side’ to my night splints

My night splints
My night splints

People who’ve been reading this blog for a while now might know that I got a new pair of night splints a few months ago; and I’ve blogged about my love for them ever since. I wake up in the morning feeling like I’ve had a really good stretch without having to put in too much effort (besides remembering to get someone to put them on for me). I don’t have to find time to build wearing them into my day either. Needless to say; I think I’m in love. As long as I remember to put a pair of socks on so that the straps don’t rub my feet I couldn’t really find anything not to like.

Until now…

Just lately we’ve been having some really warm weather here to the point where I can walk around the house in bare feet; and I say this as someone who owns a pair of microwave socks because her feet are usually so cold. I love warm weather so I’ve been switching between bounding around like an excited puppy, eating loads of Ben and Jerry’s, and reading in the garden or our lovely and warm conservatory. Happy days! I love it. Until it’s time to go to sleep.

My Microwavable socks
My Microwavable socks

My night splints are also fully-lined on the inside, (that’s part of the reason I find them so comfy), but it also makes my feet really hot. Usually, I find having warm toes quite a novelty, but with the added heat it’s making them just that bit too toasty.

I’ve started sleeping with my feet poking out of the bed covers to try keep them cool, but the other day I had to admit defeat and take them off. I’m even thinking of wearing them during the day (I can also wear them when I’m resting if I want to) until it cools down a bit.

Still, I’m not going to complain that the sun is here. I’m going to enjoy it while I can!

Now, who wants an ice cream?

 

Battling with buses: a year on

Around this time last year I found myself trying to get used to using the bus on my own. This wasn’t something that I found easy, and it would make me very nervous. I don’t drive so I spend a lot of time on public transport and I found some types easier to deal with.

I mastered the train long before I felt confident enough to take the bus because I really wanted to make a surprise trip home from university for my dad’s birthday. Once I’d done it for the first time, I felt confident enough to do it again and again. It was like the world had opened up to me and I had more independence than ever before. It was wonderful and it also meant that I could take more trips back home when I started to miss my mother’s cooking.

Getting the bus felt like a whole other ball game to me because there were so many other things to consider than remembering to book my rail assistance 24hrs before I wanted to travel so that someone would be able to help me with the ramp. Buses brought with the other challenges. I had to worry about fitting my walking frame on the bus so that no one would trip over it, and if I had to able to be able to put it in that place for myself. I have seen many buses with a whole range of different layouts, some of which I find easier than others but I never know which one will turn up.

if I have to be anywhere by a certain time I need to get one or two buses earlier than the one that would get me there just about on time in case some turn up that don’t have enough space. This time last year the thought of boarding a bus without a friend or someone to help made me feel sick with nerves and I tried to avoid it as much as possible.

However, I am pleased to say that 12 months on, doing this doesn’t bother me too much anymore and I get the bus alone quite often, although my family will always try and meet me at the bus stop by our house when I get home again to help me get off. A lot of the drivers on my local route now recognise me and are always willing to help, as are a lot of the other passengers too, which is always lovely. I just try my best to avoid travelling at busier times and try to leave myself plenty of time to get to where I need to be so that I can be more relaxed.

If I know that I need to get a lot of shopping, or use my wheelchair instead of my walking frame, then I need to have someone with me. However, if I don’t need to carry a lot and will be using my frame, I know longer feel worried about having to go it alone.

I think that’s progress. I feel like I’ve gained so much more independence and I always find that to be one of the best feelings in the world.

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…