Hi! My name is Chloe Tear, I am 20 years old and I'm a university student studying Psychology and Child Development. I have mild cerebral palsy which affects the left side of my body as a result of being born 8 weeks early and weighing 3lb 3oz, as well as epilepsy, chronic pain and impaired vision. During this blog, I will talk about what it’s like being a student who may face a few more hurdles than most. I hope you're able to follow my educational journey because anything can happen!
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What's it like to have a friend who has CP?
This blog post may be slightly different to most, to start with I have not written it. This is the second guest blog which has featured on 'Life as a Cerebral Palsy student' and has been written by a close friend of mine. I believe that finding out other people's opinions is vitally important due to the fact that I am not the only person who is affected by the fact that I have Cerebral Palsy. Hope you all enjoy! ~ Chloe x "Hi, all!
So, Chloe asked me to write a guest blog, so here it is. However, as I don’t have Cerebral Palsy, I didn’t think I would have an awful lot to say on the subject. I haven’t experienced most of the things that Chloe has in her lifetime; however, I do know what it’s like to have a friend with CP, so that’s what I want to talk about today. It’s going to be a struggle to not just start gushing about how much I love this total genius and utter goofball, but I’m sure you already know just how great she is, so I’ll try to stay on topic!
When I first met Chloe, two years ago, I had no idea she had a disability. I was a new student at the school. I only had two friends, who I had known since I was a baby, but I wasn’t very close with them at that point in time. I walked into my Health and Social Care class, about ten minutes late because I got lost about three times. I apologized and went to sit at the back of the class on my own when Chloe took her bag off the chair next to her and said: “You can sit with me if you like?”. I awkwardly thanked her and sat down. It wasn’t until then that I noticed her splint, and the purple stick under the table. However, I didn’t say anything, it’s not really something I thought acceptable to say to someone who has just saved you from hiding on your own for two years!
We ended up working together that lesson. We had to make a PowerPoint about ourselves and it turned out we were basically the same person! It was then that I found out that she had CP, and what it was. She gave me a brief explanation, most of it just being science stuff I didn’t really understand. I had never really had a friend with a disability before, so I was relatively surprised by the fact she was so independent. The only person with a disability I had ever had contact with by this point was a severely disabled girl who had been in my class in my first primary school. However, we were never taught anything about her disability and were basically just taught to ignore her and let the teaching assistant look after her. Now I’m older, this really annoys me.
When you have a friend, family member, or even an acquaintance that has CP (or another related disability) there are few things that you can expect to happen and you will quickly get used to.
Unscheduled floor meetings are a common occurrence. I used to panic whenever Chloe wobbled even slightly, but these days we’ll probably sit on the floor for a while and complain about her hips before we try and move her. I say we, I’m too small to help Chloe on my own so I usually have to enlist the help of taller people! These usually vary in seriousness depending on a huge number of things, but I can only speak from experience here. Sometimes the fall can just be laughed off, but other times it can be a little more complicated. All I can say is when it comes to floor meetings, check they’re okay first and be ready to help out if they need it. (Side note, I understand gravity checks are important Chloe, but at least warn me first!)
You’ll find that even the simplest of tasks can be huge achievements, which makes life so much more exciting. Stayed conscious for a whole week? Heck yeah! The first day not using a wheelchair after having to use it for a while? Woop Woop! You learn to appreciate everything so much more. For example, just walking around. After spending the last two years walking around the school with Chloe, I understand that getting around can take a while, but patience pays off. Not only do you get to just amble along at a leisurely pace, but it gives you more time to chat. However, recently Chloe got a second splint. That evening we went out for sushi and drinks, and I was able to watch her get used to them and see the transformation. She went from taking baby steps, to climbing up and down the stairs, to practically speed walking around town! I think it was the fastest I’d ever seen her walk and it was amazing to see! It’s so great to watch someone achieve all these things that you used to take for granted!
Seizures are usually common, as CP can also lead to seizure related disorders. These days I am a lot better equipped to deal with seizures than I was when I first met Chloe. I remember when I first witnessed her have a seizure and I was absolutely terrified! We were in a theatre and the play had just finished. She turned around to me and said that she wasn’t feeling well. I didn’t realize what she meant by that given I had only known her a month! We stood up to leave and she just fell. I flipped out! She was fine, just a little confused when she came around. She also seemed amused by my panic… Well at least someone was! After that, I started to get used to them. The advice I would give is time how long each seizure lasts, and always make sure you’re not on your own with them in case you need to go and get something for them. Also, don’t call an ambulance the second it happens, they’re not always necessary and it can just draw everything out, as well as annoy your friend! Don’t restrain them, make sure you remove their glasses, make sure their clothing isn’t too tight and, if you can, make sure their head is in a comfortable position (But don’t move it if you’re not sure!).
Emotional support is something you’ll be needed for, just like any other friend, however, this can be for different reasons. Yeah, they’ll still be times when you’re needed because of back-stabbing friends or annoying boys or dumb teachers, but be prepared to help with other things too. They’ll be days that are more painful than others, days when they’re out of spoons completely, days when it seems everything is at its worst. The only advice I can give here is be as supportive as you can. Even if you don’t fully understand the issue, or can’t fully relate, still be there for them. The more you help them and cheer them up, the sooner things will get better for them. Whether is over Facebook, a phone call, texting, carrier pigeon, anything! Just be there for them, that’s the best thing you can do.
The most important thing to remember is, they are just like everyone else! A disability is a very small part of someone, even though sometimes it likes to think it’s a lot bigger. Despite the fact that Chloe has CP, we still manage to have a lot of fun together. Nights out, movie days, sleepovers, crocheting, messaging each other and telling lame jokes until the early hours of the morning. The amount of inside jokes we have is insane. (Roll With It) (Ostrich). So in answer to the question, “What is it like having a friend with CP?”, I have little to say but this…
It’s just like any other friendship, you just have to be a little more alert. It’s not hard at all!
In order for me to complete university away from home, and get to lectures in one piece- a PA (Personal Assistant) has been vital in me being able to be as independent as possible. I have actually enjoyed the process of hiring PA’s despite it being a little stressful to find one in time. Yet, when looking for a PA, it had to be someone who could drive as well as being capable to suit all of my needs. By having a car it would mean that I could get to hospital appointments easily. However, when advertising it was often extremely hard to find someone who was fairly young (not that this is essential!), was capable of the job, could drive and was okay being with people aged 19- 21 all of the time. After 30+ applications it became clear this was all quite a big ask! Who knows my full medical history? Who would have experience in Cerebral Palsy, seizures and visual impairment? Who can drive and wouldn’t mind being with young adults all day? Who would actually quite enjoy lectures? There is a…
Dear Chloe, You're currently 7 years old and are about to embark on a journey of a lifetime. This journey will show you the world in a completely new light, it will show you things you never thought you would see, and allow you to meet people you might otherwise have never met. Unfortunately, this journey is tough, it will test you past the limits you thought you had and cause so much frustration and upset- but you are capable of overcoming this, you can find tremendous joy in every aspect of your life. You have just been diagnosed with mild cerebral palsy. You have never heard of this, and have no idea what it is! But don't worry- mum's done lots of research and has your back! These hospital appointments may seem strange, and unnecessary as you don't think anything is wrong, but it will all become clear with time. Ever wondered why you walk on your toes and fall over more than your friends? Ever wondered why you can't hop, struggle with maths and feel tired? Or hav…
Like any new mobility aid, the cane was going to take some time to get used to. I may not have liked the idea of it all to begin with, but I felt the same when I started using a wheelchair and a walking stick- there seems to be a theme here! Yet, this felt slightly different, entering a new medical world of visual impairment.
After being registered as partially sighted in February, it was advised that using a white cane would be beneficial due to how my visual impairment affects my sight. I am not going to lie, this was a shock. If you have read previous posts on this then you'll know that I did decide to learn how to use a long cane in an attempt to stop myself tripping up over things, but I was quite apprehensive about using a long cane.
To begin with I did find it helpful during the training sessions and saw how it could be really useful for myself, but using it was another thing all together. The first time I used my white cane was when I was looking in a few shops with my fam…