Cerebral Palsy Scotland

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.

Navigating my way through college – Ciara McCarthy

As part of Cerebral Palsy Awareness month, Ciara shares her helpful guide to help you through your time at college.

Hello, my name is Ciara McCarthy, and I am a college student with cerebral palsy, autism, and profound hearing loss. For a cerebral palsy month, I compiled tips to help guide you through your time at college as someone with cerebral palsy.

I began at college in the autumn of 2022, and these are things I found helpful in navigating my way through college.

Attend the Open Days of the college you’re going to.

  • It can be helpful to familiarise the surroundings and to communicate with lecturers and support staff. Often these open days have useful information about the course you’re attending, and you can ask questions

Get to know student advisors or support staff who will help you through college.

  • They can reassure you about your anxieties or support needs. Their job is to support you throughout your course. If you have specific accommodations, they ensure that you have them. The earlier you reach out to them, the quicker your Disabled Student Allowance can be processed.

Ask for a tour around the college.

  • This helped me visualise where the nearest lifts and classes were. You can get tours on open days; however, the person that supports you can have a personal one so that you feel more comfortable attending college.

Sit with people in the class.

  • As someone bullied for having cerebral palsy, it can be scary talking to new people all over again. Still, I have met incredible friends in my class; sometimes, overcoming your anxieties can help.

Join Societies.

  • Societies are a fantastic way to make friends outside of class. There are various interest-based and community-based societies. I joined the disabled students’ network, and it’s so much fun.

Don’t be embarrassed to use mobility aids.

  • If they help you, then use them as they are designed to support you. Please don’t focus on anyone else; it’s what supports you and keeps you safe.

Contact your guidance or support teacher if you’re scared about transitioning from secondary school to college. You deserve to have a smooth and safe transition tailored to your needs.

This is my personal experience at college, and it will not apply to everyone, but I hope this gives you some reassurance for your journey to college.

How I communicate all of my life – Barry Smith

As part of cerebral palsy awareness month, Barry writes about the journey he has taken in school and beyond to develop his communication skills.

Who I am and how I am writing this

Hello, my name is Barry Smith, and I am 44 years old. I have cerebral palsy, which is a physical disability. I am in a power wheelchair, and I use a Lightwriter which I will be going to talk about later in this story.

Where I am going to start this story from

Like that song in Sound of Music let’s start from the very beginning, which is the best place to start.

When I were about two years old I met my first Speech Therapist down to I didn’t know how to speak by myself, and when I did no one could understand what I was trying to say to them. So the very first thing she tries to show me to do was how to sign by using my hands, which was down to me having cerebral palsy.

When the Physiotherapist came to see me in my house, one of the very first things she did was teach me how to sit up by myself and how to fall over without hurting myself. She showed my mum and dad what to do with me, as well as bringing a few things what can help me, like a high feeding chair, which supports me to sit in the right way, so people could feed me. Then the physio teach me not put my head back when I was eating.

My family all loved me for who I was and my mum and dad took me out to see all the family.

When the Speech Therapist came back

About a week later, when she came back to work with me again, she asked my Mum and Dad if they could put me in my high feed chair, which had a small table over it. After they got me in it, the Speech Therapist went into a handbag and started to tell us, “I have got a big Bliss Board which has a few signs on it and the word at the top of each one. I am going to try with Barry – if he points with his index finger to the sign and people could read the word on top.”

When she did this, I pick this up like a duck to water. A few weeks later, she came back to check how I am getting on with using this. After she saw how well I was doing with using this, the Speech Therapist could not believe how well I was doing with this, when using this in a little time.

As soon she shows me a little more, she told my Mum and Dad, “I am trying to instruct a young girl around the same age as Barry. When I have seen how well your son is doing, if you both don’t mind, I would like to take Barry to meet her to show her how good he is when he is using his Bliss Board, in the hope she might herself, if he can do it, I can try it.” My Mum and Dad did not even need to think about it because they were so happy I was able to communicate with them, so they told her yes.

Going to meet her

About a week later my Speech Therapist pick me and my Mum up in her car and she took us to the little girl at a playground, where we were meeting. When the three of us went into the hall there were two feeding chairs, which looked like my feed chair at home. As soon we met the girl and the staff member who was helping her, they told us one of the feeding chairs was for me to sit in, and one for her too. So, my Mum put me into the feeding chair, and the person who was supporting her put her on one side of me, we both had the same table over us. As soon we were sitting nicely our Speech Therapist came over and gave us both our Bliss Boards and lay them on both tables, then she stood back and watch what happened with us.

The very first thing I did were to make sure she was watching me, when I knew she was watching what I was doing, the next thing I did were point to a Bliss symbol with my index finger, and the Speech Therapist read it out what I was saying to her. Then I took the girl by the hand to show her she can do the same thing just like me. I used the Bliss Board until my last year of school and liked using it. Now looking back on it people needed to stand over you to see what I was pointing to isn’t good, and as well if the person isn’t able to read they won’t have any idea what you were saying to them.

Getting my Lightwriter

In my last year of high school, I got an SL30 Lightwriter. Because I were starting College the College told me I will need a voice output communication aide if I wanted to do a course at the college. I was going to college one day a week on a school link. Apart from my college day I wasn’t with people who use Communication aids.

When I had just used the Lightwriter for a few days, I remember my class had a class on shopping skills, I remember when I went into the class, my teacher told us half of the class was going to a shopping center and half was going the next week. I was going to the shopping center. The teacher asked everyone before we go on the school bus to take us to the shopping center, we must go to class first because the teacher had things for us to do when we are out shopping. I remember my teacher asked me to get some coffee for the class then she hands me some money to buy it. I asked her who is going to help me to do this. The teacher told me, now you have got your Lightwriter you can ask someone who works in the shop if can they support you in the shop to get you what you need to buy.

So, after I got dropped off at the shopping center, the teacher told all of us we will meet in a Coffee shop after each person from our class group did what the teacher asked them to do. I remember feeling all grown up by this point because this was the first time I were shopping by myself. I had mixed feelings about doing this – I was very happy to do this by myself and as well I was very worried too.

As soon as I got to ASDA I were very worried if I ask for support in the shop they might tell me they won’t help me. But then because I had a speech output voice I also couldn’t wait to ask to see what would happen. When I went up to the help desk, I type into my Lightwriter what my teacher told me to put into it, when the lady who worked in the shop asked me “how could she help me,” I play what I type in back to her.

The lady told me she will get someone to help me with my shopping, and I felt so happy. When I returned to meet my teacher, I thanked her for telling me to do this.

Leaving school

After I left school I got a Speech Therapist from Ayrshire where I came from. The very first thing she did was take the Lightwriter and the things Glasgow give me on a loan, she took it back to give to them. Then the lady gives me the same thing back which was Ayrshire, she told me this is on a long-term loan now. Since that time I move onto Sl35 in 1998 which was a new Lightwriter that has a deep Keyboard and can predict the words what it thinks I want to type into it. I used this for ten years then I got Sl40 Lightwriter. Then I move onto the SL50. Before I go, I would like to make people aware of a communication aid isn’t just for Christmas, it is for people’s life too.

Why I love volunteering for my local radio station

For cerebral palsy awareness month, Adam Baird writes about how volunteering at his local radio station has allowed him to develop his skills as a radio DJ as well as boosting his confidence.

“My name is Adam Baird and my passion is music and sports. When I saw a poster advertising volunteering opportunities at the local Hospital Radio station when I was 18, I went along to see if there was anything I could do for them. I spoke to them about my idea to have a show every Saturday with music mixed with sports news such as the half time and full time football scores.

“The Station Manager liked the idea and surprised me by saying I could do a weekly show every Saturday after some training!  I enjoy combining my favourite interests in a two hour show and have managed to do at least 40 shows each year for the past 21 years. I enjoy it just as much today as I did at the beginning.

“The radio station has now moved from Hospital Radio to an online station available for anyone to listen to. This means I don’t need to be so careful about what I am playing. On Hospital Radio, I had a list of songs that I thought might not be appropriate for my audience. Songs such as ‘I just died in your arms tonight’, ‘The first cut is the deepest’, ‘Beds are burning’ and ‘Achy Breaking Heart’ are good examples of songs that were on my blacklist!

“I had no idea it would be such a long term and rewarding experience for me when I volunteered. It has given me confidence and something for me to look forward to every week. I am so pleased that I had the courage to volunteer all those years ago. Hopefully  this article will encourage others to consider volunteering for something that becomes a big part of their life.”