Cerebral Palsy Scotland

My cerebral palsy is a part of me – Barry Smith

As part of cerebral palsy awareness month, Barry has written a poem titled “My Cerebral Palsy is a part of me”. 

My Cerebral Palsy is a part of me.

Many people who don’t know me might see me in my power wheelchair and feel sorry for me.

Thinking I don’t understand what they are saying to me and what I don’t like because I can’t walk, and many people can’t understand what I am saying to them.

Yellow sky lights up when I got my high text communication aid, that has speech output on it after I type into it what I want to say.

Cats and Dogs like getting patted on the head but I can’t stand it.

Eyes might look but people may not want to ask what is wrong with you. It is the wrong thing to do in my eyes, that aren’t green like my cat.

Run away, I can’t physically do but in my mind, I can be who I want to be.

I want people to see past my physical disability and see me for the person I am.

I can hit a ball with my wheelchair, which feels good too.

A happy day is when people see me for the person I am.

Love shows from my heart because I am so happy when people see me for who I am.

Love shows in my eyes, people can see this which is so nice for everyone too.

People may walk by me and feel sorry for me. I don’t like that because I am a person who is just like you too.

A great person, I am. No need to look at my physical disability.

Love and understanding are what I need in my life, which is a gift of life.

Yellow sunlight helps me in my life and make me feel so happy.

I open my eyes each morning and try my hardest to do what I can in my life.

See me as a person, for who I am.

An apple might be hard to eat, but living with Cerebral Palsy is the same – but so good too.

Barry Smith

Accessible adventure holidays at Calvert Trust Kielder

As part of cerebral palsy awareness month, Barry Smith has written a blog to let people know about the accessible holidays on offer at Calvert Trust Kielder.

Twenty minutes over the England border from Scotland is a bit which is called Kielder and it has the biggest man made loch in the U.K. As well, it has one of the best holidays for disabled people and their family, who is all ages.

In this story, I am going to tell you about all types of holidays you can have here.

I will start by talking about the little log cabins that sleeps up to six people which has anything you need for a disabled person so they can have a holiday with their family.

If you don’t want to stay in the main center and you’ve got support, there are small flats you can get with everything a disabled person might need, and bigger door ways so a wheelchair user can get access to everything they needed.

If you want to be a part of anything at Kielder, please let the main office know and they will try to plan it for you, and tell you where to meet the staff member to support you.

Now on to respite holidays which I know more about myself because I have been on them three times already and got one booked for this year. This holiday is for over 18s only who have 24-hour support and care. When the person books this they will be asked to fill in a care plan for them to let the care staff know what kind of support the person might need when they’re there, like if the person might need support to get up in the morning and getting washed and ready, don’t worry the care staff can do this for you. You also get three meals each day.

As well as that, you are doing two fun things each day, such as:

  • Swimming pool
  • Going out on golf buggies
  • Climbing wall
  • Abseiling
  • Going on a Move Boat
  • Canoes
  • Zip wire

As well a lot more things but I am not going to tell you so you can go and find out for yourself.

One more thing before I go, when you are booking the holiday they will ask, does the person need to be picked up and dropped off again after their break. If they do they can do it up to 50 miles. Some people like me go on the train.

For more information, visit Calvert Trust Kielder website.

Going to school with cerebral palsy – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares her experiences of education as a person with cerebral palsy.

Melissa is a young author and disability activist. Growing up, writing was the most effective way she could communicate. Melissa has her own blog called Buttons and Ramps which you can find here – https://buttonsandramps.wordpress.com

Going to school with cerebral palsy – Melissa Cassidy. 

School – the foundations of almost every modern life or at least somewhere parents can temporarily abandon their annoying children. Regardless of how you see it, everyone has a different experience of school. When you have a disability though it adds a whole new layer of physical, emotional and social challenges. I want to share my experience of education in the hope that it illuminates what going to school can look like when you have a disability.

Let’s start at the beginning: after a traumatic birth my parents are left with a (abnormally good looking) disabled baby and a future of uncertainty of what my life was going to be. They didn’t know where to send me to go to nursery until the health visitor suggests a special nursery conjoined with a school called Kelburn Park. My parents didn’t know too much about disability but decided to check it out as an option. My mum tells me that the first visit we had I came out with a beaming smile and begged her to let me go there. The nursery was perfect for me and I honestly don’t have one bad memory of it. My mum said it was quite scary at first as they collected the kids from their homes to take to nursery and she didn’t enjoy having to hand me over every morning which is ironic because she’d probably love a moment of peace like that nowadays. I was a really happy, outgoing child so at nursery I could often be found pretending to perform plays, writing stories and painting.

Special nursery was definitely the right place for me but things changed when I went into primary one at the special school. While I was having fun, my parents grew concerned that by Christmas in primary one I hadn’t really developed my reading skills and by the end of the year they made the tough choice to move me into mainstream school. While this wasn’t easy, they felt I needed the same level of education as my sister. Ultimately this was the right decision, although I was starting a year late I settled in really well. This kickstarted the phase of me realising that I was different to my peers which got me down for a few years and definitely affected the way I felt about myself but I was fortunate to be relatively included and accepted by my peers and definitely flourished at my primary school.

Then came Secondary school and this is where I really started struggling. The first year at Secondary school, I found it incredibly difficult to make friends as I watched most of my other friends find other friendship groups while I struggled to speak to people because I was so self-conscious. This also resulted in me having some resentment against my helpers at school because I just wanted to be “normal”.

Looking back, I wish I had had better role models and more confidence as my lack of confidence then has definitely had a ripple effect on where I am now. Eventually I had to let go of the internal desperation to be like everyone else and this is where I started forming better relationships with my assistants and even made a few friends. Forming that bond with my assistants especially my closest one whom I often refer to as “my second mother” was crucial to me getting my confidence back.

Another thing that had a huge impact on my confidence was the arrival of a new drama teacher, in the space of a month I went from silently loathing drama to confidently laughing and performing with my class. Once I felt that encouragement nothing stopped me and I actually ended up getting a drama qualification two years after.

What I’ve learned about going to mainstream school is that confidence in yourself is everything. I lost a lot of time in my life being self-conscious and not wanting to put myself out there when that is the only way you are going to thrive in a mainstream school. My family and I have all been through an incredibly transformative journey as I’ve gone through school but the opportunity to get that mainstream education has been entirely worth it.

Barry – A day in my life

As part of cerebral palsy awareness month, Barry writes about a typical day in his life.

Hello my name is Barry Smith and I am 43 years old. I am in a power wheelchair because I have cerebral palsy (CP) which is a physical disability. Down to me having this, I am going to write about 24 hours living with CP to let people understand what it feels like.

Before I start, I am going let you know how I am writing this. I am using a computer with a big keyboard which has an overlay on it, so I don’t press the wrong key. I use my big toe to type, and I use a jelly still for my mouse.

Each morning when I open my eyes at home I get out of bed by using my bum. The first thing I do is make my way to my lift which is just off my bedroom. When I get to my lift I press the button which is on the wall, which opens the door to it, then I bum my way into the lift. As soon as I am in the lift I press the button to close the door, as soon it close I press the down button. The lift goes downstairs with me in it, and as soon as it stops, I press the open button to bum my way out.

By this time one of my Personal Assistants (PAs) is in my house. The first thing the PA do for me is they make me a cup of coffee and put it on my coffee table and then put a straw in it, so I can drink it by myself. The PA give me my Lightwriter which is a small computer. When I type into it and press the speech button it tells people who don’t know what I am saying to them, I can type it, so they know what I want.

Then the PA ask me what they can make me for my breakfast. As soon as I tell them, the PA asks me, do I want to eat now or will I do my housework first. Most times I say to them do my housework first, then I get my breakfast made when I want it. They ask what I want to eat and drink so the PA can make it for me, and as soon as it is ready I sit up on my big chair in my living room so the PA could feed me with my food, and they put what I want to drink on my coffee table for me to drink.

Then I get back into my lift and my PA goes upstairs to do my support which I am not writing about. When I come back down the stair if I need to go out, like getting my shopping, I do. My PA will come. This is because I need support when I am out.

My day goes on this way, and my PA leaves about 10 pm and I go on my PC before going to bed. Before the PA goes they make me something to eat then they feed me with it and do what personal support I may need. I go on the PC for head space before I make my way to bed for the night.

See more articles and blogs from cerebral palsy awareness week. 

 

How I look after mental and physical health as a disabled teenager – Melissa Cassidy

As part of Cerebral Palsy Awareness month, Melissa shares how she looks after her mental and physical wellbeing as a disabled teen.

Melissa is a young author and disability activist who has cerebral palsy. Growing up, writing was the most effective way she could communicate. Melissa has her own blog called Buttons and Ramps which you can find here – https://buttonsandramps.wordpress.com

How I look after mental and physical health

Being disabled and attending mainstream school can be a lot for me sometimes and despite being a relatively happy person, I have times where I drop the ball on making sure I stay healthy. So I thought it might be helpful to share some of the things I do to keep myself both physically and mentally well.

When it comes to physical health when you have cerebral palsy it’s often hard to find the balance between doing enough activity to keep your muscles strong and taking enough rest so you don’t burn out. I find this difficult as someone who loves learning, working, sports and essentially most creative or physical activities. I’m constantly working on projects like my blog, or my social media and sometimes I forget that everything I do costs me energy. So recently I’ve been working on striking this balance by accepting the fact that sometimes I need to just say no to things; saying no to going out, to going to my usual clubs, and sometimes saying no to opportunities. Being able to understand and accept my limitations has been really valuable because it allows me to conserve energy for things I really care about and want to do.

Another thing I do to take care of my physical health is making sure I divide my time equally between being in a wheelchair and walking around. Since I spend most of my day at school in a wheelchair, I generally avoid my wheelchair outside of school. I’m extremely fortunate to be a ambulant wheelchair user and I often try to take advantage of that by picking and choosing when I’m in my chair and when I’m up and about.

I have found my mental health is much harder to take care of as a teenager with cerebral palsy. I have an amazing support network around me which makes life easier but I find that often having a physical disability takes a toll on how I manage my thoughts and feelings. As I previously referenced, my energy is really limited and this can make it hard sometimes to process everything going on which becomes stressful. I think because CP is so physical, people don’t consider the impact it has on our mental states. This as well as the social challenges and physical difficulties adds up and can ultimately be quite draining. But there are things that I have found that really help like trying to openly communicate how I feel to someone close to me just to get it out there, or taking hours out my day to just sit and watch TV and switch off. It sounds like common sense but I think people often don’t understand or downplay the mental side of being disabled.

Whether you’re disabled yourself, a parent or carer of someone disabled or even just know a disabled person, it’s important to understand how their mental and physical health may be impacted by different things and strive to be more accommodating of this.