Dear 5-year-old me

September 29, 2019

By Mary-Elaine McCavert

Dear 5-year-old me,

 

Don’t worry, you’ve got this. You really do! You will adjust to your first splint, your first walker, your first physiotherapist, your first friend that doesn’t live life as you do. You will adjust to your first mean name, your first time feeling left out, your first time wondering what things would be like if you weren’t “different.” You will adjust to it all because you can.

 

You will adjust to daily accessibility challenges, you will adjust to hospital life and home life, you will adjust to school life, university life and work life. You will adjust to the stares, the assumptions and the lack of knowledge. You will adjust to it all because you can.

 

You will adjust to new symptoms, new medications, new frustrations. You don’t have to love any of this, but you have to learn these experiences do not make you lesser or inferior. You will adjust to insecurities, fluctuating self-esteem and fears for your future, and you will realise you have a right to live your life as much as everyone else does. You might sometimes feel you have to hide or apologise for your disability, but don’t do this. You owe it to you to be you. It will take time and it might be a rocky road at times, but I promise you will adjust to it all because you can.

You will live a wonderful, rich, vibrant life because you can.

 

Have a lovely day,

Mary-Elaine McCavert

Brains on Wheels

April 29, 2019

By Ailsa Speak

Hi everyone, I’m Ailsa. I am the proud owner of Brains on Wheels. Brains on Wheels is my personal blog, where I write about my experiences surrounding my disabilities. I would like to thank Ellie for letting me write for CP Teens UK…

 

I live with Cerebral Palsy, I wouldn't say that my disability is that severe because I can do a lot of things and there are people who are worse off than me. Here's one thing that I can do: I can use my feet to use my computer, I can do this quite easily.

 

I aim to raise awareness about disabilities because I feel that it is an important subject for everyone to be aware of. I think so many people just dismiss me because they think they won't be able to understand me or the other way around. There is no doubt that other people feel the same way about this, so I want to help to put a stop to this.

 

I feel that too many people are afraid to talk about disabilities because they think that they might offend another person or they might feel awkward talking about it. In my opinion, you have nothing to stop you talking about things and if other people don't like it, then it's their problem, not yours. Never be afraid to talk about disabilities or illnesses. 

 

If you don't talk about it, then it will be even more awkward because you will be for ever thinking about what not to say and our whole society will become silent when it comes to talking about disabilities and illnesses. If nobody talks about disabilities and illnesses, how are people going to learn?

When I was born, I didn’t breathe. I was stillborn, but I was resuscitated, it took the doctors about twenty minutes to resuscitate me.

As far as I'm aware I was fine when I was in my mum's womb, when I came through the birth canal the doctors lost my heartbeat, which is normal, but when I came out, I didn't breathe. At this point, the doctors didn't know whether I would live or not. Then they said I would live but they didn't know how long for and what quality of life I would have and how long I would live for.

 

Finally, they said I would live a decent quality of life, like anyone else. 

 

Around five percent of babies are born on their due date, and I was one of them. As a result of me not breathing, in that period when my brain didn’t get the oxygen it needed, brain damage occurred. I was on a ventilator for two days; the ventilator took breaths for me by pumping oxygen around my body and into my brain. I had tubes all over me, this was to help me breathe. If I didn't have the tubes on me, you could never tell that there was anything wrong with me because I was a perfect colour, all the other babies were premature or they had something wrong that was visible.

 

There were about three stillborn babies on that day, and I was the only one that survived. The doctors gradually turned my life support down so they could find out whether I would breathe on my own, and I did. I came off the ventilator on my sister's birthday, which was a wonderful birthday present for her.

 

My type of Cerebral Palsy is called Quadriplegic (affects all four limbs) Athetoid (uncontrollable movements) Cerebral Palsy and it effects every muscle in my body, apart from my heart, luckily. My right arm is affected more than my left, I can hardly use my right arm because my muscle tone is worse in that arm, for example, I have more involuntary movements and my right arm has become weaker over the years as well (I have a feeling that this is because I didn't use it much when I was younger).

 

I like to be as independent as possible, but there are some things I need help with. As well as blogging, I campaign about different issues that may arise. At the moment, I am campaigning to make the owner of Instagram, which is Facebook, aware that Instagram isn’t accessible to everyone due to it being a mobile phone-based app. In the end, I am hoping that we can get enough petition signatures to make Facebook listen and get them to make Instagram accessible to everyone. You can read more about this on my petition here: https://www.change.org/p/facebook-make-instagram-accessible?fbclid=IwAR2WAFFv-bYbs22_esRgR5XJyxq_-qZNJDhayApkNSkzjRwuAqqAeyJd5uE

 

People often say that they "feel sorry" for me and that makes me feel unhappy and awkward because I am who I am, and I can't change that. I don't want anyone to pity or feel sorry for me just because I have Cerebral Palsy. If I didn't have C.P., I wouldn't be the person I am today and I wouldn't have met some of the awesome people I know! So, next time you think of feeling sorry for me, please don't. If you asked me, I'd say I am very lucky to be here today.

 

Thank you for reading this, I hope to see you again over on my blog. Read more about what I get up to by visiting my blog here: http://ailsas.wixsite.com/brainsonwheels (Brains on Wheels)

Finding my feet in the adult world

April 15, 2019

By Abbie Smart

Hello,

 

We have all been there, it’s coming to that time where a lot of young people, disabled or not, are finishing school, college or university and having no idea what their lives will map out for them next.

 

Finding something to do is especially hard when you are trying to be independent as much as we want to be, because we like keeping up with other people our age are doing - it is really tiring when we want to do something like everyone else. However, people with disabilities have so many other things in their lives like physio and other activities to help them to become stronger and more independent - this sometimes takes priority and the other things can be hanging over them waiting to be done. It's a hard thing to work out what is the best plan and when is right to start working on them.  

I think becoming an adult is a lot harder than when we are children, because when we are children a lot of decisions are made for us. When we get older we need to start making some decisions for ourselves, this can be very exciting as we can have our say on what matters to us. However, it can be difficult when we have a added complication of our disability and everything that we would like to is possibly out of our reach.

However, I feel that when we get the right support, we achieve things that we thought weren't imaginable. I love the incredible things I have done throughout my life but I wouldn't have done these things without the support I needed.

I love being independent as I bet others do to, but without the support I don't think I would be as independent as I am today.

I feel that I have started to find my feet with how determined I am but I have a long way to go. I am happy with my life and I am looking forward to getting somewhere that I want to be in life.

Thanks 

Abbie x

Cerebral Palsy Awareness Month

March 19, 2019

By Georgia Vine

I’m Georgia and I was a premature baby by 5 weeks. It was apparent from birth that something was wrong as I was in intensive care for 2 weeks and during this time, I was having regular seizures. I eventually got my diagnosis of spastic CP when I was 18 months old with my official diagnosis being Spastic Diplegia Cerebral Palsy with ataxic/dystonic features, however as my parents had no experience with CP, they didn’t know what to expect. It was more noticeable as to how my CP was going to affect me when my younger sister was developing faster than me. But my parents were very determined to help me, for example, making me walk regularly and doing physiotherapy with me. I believe if it wasn't for them, I wouldn't be able to achieve the things I'm doing today.

So once I was diagnosed, I was obviously back and forth to the hospital. CP affects me in all 4 limbs, pelvis, trunk, head control and my speech is also affected. My cerebral palsy affects both fine and gross motor skills, I can walk short distances like around the house but most of the time I use either a manual or electric wheelchair. 

I always have kept active doing dance lessons, drama lessons, swimming lessons, tennis lessons, horse riding and wheelchair basketball. I have never let my disability stop me as you can tell from this list. Some days are good, but others my CP really gets the better of me and I struggle just to do a simple task as I can use up to 5 times as much energy as most people, so it is very tiring at times. I do get frustrated at times when I can't just do my hair or put my jewellery on, but I am very lucky to have my family to help me do these little things.

But even though my body doesn't function as easily as others, it doesn't stop me as I am currently at university studying Occupational Therapy, something of which I would have never chosen if it wasn’t for my previous experience with OT. I’m loving life at university and I believe that occupational therapy is the perfect course for me. However, at times I do wish that I was able to live more of the ‘student university life’ as being so dependent on my parents means that living in halls would have been extremely difficult for me as all my energy would have gone into looking after myself rather than focusing on my work. I still go on nights and days out with my university friends, although I do wish that I could go on a night out more often as there have been a few occasions where I’ve had to turn a night out down due to fatigue.  Not only this but as a result of CP, I also have epilepsy, so I must make sure I’m fully fit for a night out. 

 

I have also been playing the piano for 9 years now, the piano has been a great source of therapy for me as it has helped me to improve my fine motor skills.  Not only this, but it has also enabled me to become more confident that I can overcome any hurdle given! 

Having CP means that a few hurdles crop up when least expecting, but with the right attitude and determination, I will get over these hurdles. I am lucky to have a very supportive family that are behind me 100%, as some days, even though I don’t want to admit it, I do need help.

 

CP awareness month means a lot to me as it gives me the opportunity to write blogs like this because people often think that as a result of my CP, I just get more fatigued - when it's actual fact that it is much more complex. I also love this month as I can read other stories about CP and learn a lot more as no 2 people with CP have the same needs.

 

I wanted to share my story to enable people to get a glimpse of what goes on behind closed doors. I consider myself extremely lucky that my disability isn’t life-threatening and that I am able to live a fulfilled life, however I still face challenges daily. Facing these challenges can be frustrating but I would never choose a life without CP as without CP, I wouldn’t be the person I am today. 

 

Happy CP awareness month 2019!!

 

Thank you for reading I hope I have given you just a little bit more insight into CP.

 

Georgia Vine. 
@georgiaanv

My Speech Impairment

December 17, 2018

By Georgia Vine

My speech impairment is something that I’ve never talked about before, I guess this because I always thought it was because of my CP and when I was younger I just thought everyone who has CP has a speech impairment. But now I’ve got older and have more of an understanding about the variation of CP and I realise that not everyone with CP has a speech impairment. 

When I was younger my speech was worse and I often got ask to repeat a sentence multiple times which would get me down to the point  where I would say ‘it doesn’t matter’ or I would get my parents to say what I was saying for me.  I suppose this used to get me down more so than now because you hear your voice different to how others hear it therefore I used to think ‘my voice is clear so why can’t you understand?.’ Now I understand why people find it hard to interpret what I’m saying but I still forget how complex my voice is until I hear it back on a video and sound recording. 

 

I’ve never hated having a speech impairment as I’ve never known any different but as I’ve got older I find it getting in my way even more and I’m becoming more self-conscious about it. This is because I find myself making more phone calls therefore I get frustrated when I’m having to repeat myself numerous times over the phone.  I also find doing presentations quite difficult because I never know if what my audience can understand what I’m saying when I’m presenting to people I don’t know.  However there’s always a way around obstacles and therefore I often print out handouts so they then get a general overview of what I’m saying. 

I still sometimes get my parents or whoever I’m with to order for me in a restaurant or I write down my destination for the taxi driver. The frustrating element isn’t the fact that they don’t understand me because I get that they can’t help it, it’s the time factor that’s annoying. It’s when the taxi driver starts driving and then has to pull in 2 minutes later so you can show the driver your destination.  But I’d rather someone ask me to repeat something than just nod and pretend they understand because this is even more annoying as you can tell they don’t understand. I try to control my voice but when I’m laughing and I am excited this doesn’t always happen and sometimes I need to be reminded to slow down. However my speech impairment is part of me and it always will be a part of me and without my ‘funny voice’ I wouldn’t be me. I wouldn’t change this and mostly importantly it will never get in the way of my confidence. 

 

Thank you for reading, 

Georgia Vine @georgiaannv 

The Sky's The Limit

November 27, 2018

By Gareth Herridge

November was quite the eventful month in the world of disabled flying! At the beginning of the month we heard the story about Justin Levene who, after his self-propelling wheelchair was left behind on a flight, chose to drag himself through Luton airport rather than lose his independence and risk developing a pressure sore by being pushed around in a rigid airport chair. Then a couple of weeks later, another story broke about Darren Belling who, when needing to use the bathroom on a flight, was told there were no chairs on board to transport him to the toilet so he would need to either go in a bottle (after first paying for a blanket to cover himself with!) or cross his legs for the remainder of the flight!

 

Due to legislation such as the Building Act 2004 and the Equality Act 2010, every effort is made to ensure newly erected public buildings or places of business are wheelchair accessible, and wherever possible, older buildings are being adapted to make them more accessible. Hotel chains have specially adapted rooms in each of their hotels for disabled guests. The vast majority of public buses and black cabs now have ramps built into them, and trains have wheelchair ramps either on board or waiting at the stations. Of course none of this is perfect and there is still plenty of room for improvement: Some ramps are way too steep to be attempted independently, the London Underground is still largely an inaccessible nightmare, and there is a huge difference between an accessible hotel room with a few grab rails by the bathtub and one with a roll-in shower plus drop-down seat. Still, progress isbeing made or at the very least attempted! Therefore, questions need to be asked as to why, at a time when access for allis being so strongly promoted in every other aspect of life, airplane/airport travel seems to be languishing decades behind?

 

When you arrive at the airport, the first thing you have to go through is the gruelling process of wheelchair check-in, made ten times worse if you’re travelling in a herd! Oh and if anyone happens to have battery-powered wheels, prepare for a lengthy grilling! Eventually though everything gets processed and tagged, including the chair you’re sat in, so you are now free to roll around the airport like an escaped piece of sentient luggage; all the while praying that none of your vital medical equipment or Active Handsgripping aids (never leave home without them!) get misplaced on their way to the airplane.

 

 

The next bit of fun occurs when it’s time to board the aircraft, which means surrendering yourself, dignity and all, to the mercy of...the aisle chair! This two-wheeled, ‘slimline’ device is designed to fit comfortably down the aisle of any aircraft, meaning that the seat is very narrow, often leading to a farcical balancing act as you are forced to make a split second decision which of your buttocks is going to be sacrificed and left dangling over the edge! You are then secured to the chair with enough straps and harnesses to make Mr Grey blush, before being tipped backwards and dragged on board, the one small mercy being that wheelchair passengers get boarded first, so we are spared the indignity of being carted onto the plane in full view of every other traveller. Except it doesn’t always work like that. No, I can in fact state that on well over 50% of the flights I’ve been on, by the time I get taken on board, the airline has very thoughtfully let everyone else take their seats, ready for the main event; as I’m hauled onto the aircraft and down the aisle whilst tilted backwards and strapped to a chair like a convicted serial killer on his way to death row!

 

 

As you may be able to tell, I can generally see the funny side in a lot of these issues, and none of them are going to be deal breakers when it comes to travelling abroad. However, if you’re planning on taking a flight somewhere and are feeling at all unsure about any aspects, then my advice would be to look online for answers after which, if it’s still unclear, contact the airport or airline directly and get your queries answered in writingso you have written proof if needed. 

One thing I do find completely reprehensible is when an aircraft offers absolutely no solution for how a wheelchair user is supposed to access the bathroom, meaning they are required to urinate into a bottle or bag, then either give it to someone else to pour down the toilet or keep it on them until they have disembarked! And that’s assuming they only need to pee! How is it that we’re able to take a giant, hollowed out hunk of metal and get it to fly, yet we’re unable to figure out a way of offering access for allwhen it comes to the bathroom?! A couple of years ago, on the way to Rio, I went an entire eleven and a half hour flight without going to the bathroom, purely because I didn’t want to have to suffer the embarrassment of draping a blanket over my head whilst catheterising myself and peeing into a bag in the middle of the plane. This meant having to limit how much liquid I consumed during the flight and even then, the last hour or so was fairly uncomfortable, not to mention the whole thing being pretty unhealthy for my body. I know this was a choice I made myself, but I really shouldn’t have had to.

 

The fact that there is often no dignified way for a wheelchair user to go to the toilet on a flight, the fact that, despite guidelines stating otherwise, we are often boarded last, and the fact that the vast majority of airports only provide rigid, geriatric wheelchairs that cannot be operated independently suggests, at least to me, that disabled passengers continue to be an afterthought when it comes to flying. In order to combat this and move forward, changes need to be made from the ground up. It is my firm belief that, in all jobs involving the public, a basic level of education is required when it comes to catering to the needs of people with disabilities. I’ll be the first to admit that when I was younger, if I saw someone in a wheelchair, I naively assumed that their legs didn’t work and that was it. A greater understanding is needed on the vast scope of disabilities; from CP to MS, spina bifida to spinal injury, and the sooner people are made aware of this then the sooner appropriate action can be taken to ensure the needs of everyoneare taken into account and solutions can be formed. 

 

And once this has been achieved, then the sky really will be the limit! 

 

Gareth Herridge

Mainstream and Special Education: The Differences

November 12, 2018

By Abbie Smart

I have attended both mainstream and special needs schools and college and I have noticed there are a lot differences between them. 

For instance, when in mainstream school I was the only one who was disabled and in a wheelchair. This was hard for me to be able to keep up with my fellow peers as I found that everyone was doing their own things and I wasn't able to keep up because it was too difficult for me to join in. Therefore I was a bit isolated.

However, when I started and attend a college for special needs students I felt that there were lots of people in the same position as me and I felt we were able to understand each other on another level and understand how we think and feel about situations that mattered to us.

I did enjoy going to a mainstream school as I was able to feel like a typical student and be able to sit my exams but I didn't really get much else out of it. I got myself stressed out over work and basically didn't really want to be at school. I can't say how many times I cried over the fact I couldn’t understand my homework. 

But at college, I am able to focus on what is important to me at my own time and pace. I was able to get to know myself a lot more and I feel that I am able to manage my anxiety and the way I deal with things in a bit of a better way.

Now I'm in my third and last year at college, I am still very anxious about things sometimes but with support I am able to tell people what is the matter without causing so much of a fuss. I plan more so when something big happens I am in not as much of a panic to deal with it. 

The main thing when looking at what school or college is best for you, is being happy where you are. You need to be happy with what you have to go forward in life. Being happy with life will make things seem a lot easier to cope with.

 

Thank you for reading 
Abbie xxx

New Chapters

October 23, 2018

By Georgia Vine

First of all, this is my first blog post for CP Teens so I’d like to say hello and thank you for giving me this opportunity. I’ve wanted to blog for CP Teens for quite a while now but I’ve never been confident enough, however over the last few years I have become a lot more confident and open about my CP so now I feel that I’m ready for the next stage!

I’ve recently started at University, studying Occupational Therapy and I am really loving embarking on a new adventure. But there’s still that element of worry about studying at university with a disability, and I’m still asking myself questions such as… ‘Will I be able to cope with the work?’ or ‘Will I be affected by fatigue levels’? The answer is I don’t know until I try.  New chapters are going to be daunting and will always come with a bag full of mixed emotions no matter who you are, so therefore I’m going to embrace this opportunity and throw myself right in and make sure that I get out of University what any other individual gets out of it. 

However you only get out what you put in…

Trying to balance studying whilst having CP feels like a juggling act at times. When doing a piece of work I find that it will take me a lot longer to get it finished than perhaps it would the average person so when I think I’ve done an hour’s worth of work in actual fact in may be half an hour’s worth. This can vary depending on how I feel, when it’s at the end of the term I fatigue more easily so therefore any work I do may not be up to my normal standards. Having cerebral palsy will never and has never stopped me from trying my best, I’m not afraid of work, however there are occasional days I miss out due to the loss of energy but everyone needs a day off! For me listening to what my body needs is a key factor in ensuring that I don’t over work myself.  I will always put work in and try to achieve the grades I want to achieve. But I’m never not, not going to stress about work and fatigue levels because it’s in my nature.  

 

Doesn’t this make the work more meaningful?  The answer is yes it does make the work more worthwhile because I know how much time I’ve dedicated towards that piece of work and how it’s knocked my energy levels, but yet I’ve still completed it.

Thank you for reading,

Georgia Vine

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DISCLAIMER: This organisation & website is run by people with Cerebral Palsy, for people with Cerebral Palsy (and other disabilities). No medical experts or professionals on Cerebral Palsy, or any other disability, were involved in the making of this website.

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