Cerebral Palsy Scotland

Exploring the connection between cerebral palsy and anxiety – Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her story of being an adult with cerebral palsy and experiencing anxiety. 

So I’m an adult now and cerebral palsy hits differently than it did when I was a kid. There are no regular doctors’ visits or physio sessions – no one worries about growth-spurts and leg lengths any more. I don’t get called names in the playground, (not that I’m aware of anyhow.. though I did recently find a note in a social area that read ‘Ms Baker leans and walks.’ I’m a depute head teacher in a secondary school and you bet I do, wee yin! Thanks for noticing!), I’m pretty aware of what I can and can’t do and moderate as needs be. The children in school almost instinctively swirl round me on stairwells, ensuring I always have my trusty bannister to my right and family, friends and colleagues are amazingly supportive and understanding. What I find difficult can mean that someone else takes on a little bit more and its so appreciated. So many little points of assistance in familiar spaces with familiar faces which make you feel comfortable and – I don’t know how else to say it – normal.

I wanted to talk about anxiety in this blog. It’s been a huge and, at times, pretty crippling part of my life. I had a complete breakdown around twenty years ago and had two awful years recovering from it. I didn’t even know what anxiety was at the time but I could barely function and genuinely felt I was losing my grip on life completely. Looking back now I can see that what happened then wasn’t isolated. But I had no knowledge or understanding – just fear.

I couldn’t do my hair as a teenager. It drove me crazy. I was 16 before I successful managed a ponytail and that’s still about the most I can do with it. The frustration and upset of that was out of all proportion to what I was trying to do but hours in front of the mirror and a hairbrush that got chucked across the room was not unusual.  (Shout out to my two sisters who were always happy to save the day, the mirror and my sanity lol)

I recently had an adult assessment at Cerebral Palsy Scotland and asked them about the link between cp and anxiety. Was there one? The physiotherapist said that I have to work harder to get to the baseline of daily activities and over time that can cause stresses and anxiety. This really hit home for me. I don’t like change – never have but I started to wonder if this could go some way to explaining that? Staying in familiar circumstances means I don’t need to rev so hard to get by – in familiar places and surroundings I know what to do. I don’t need to wonder if I’m going to hit a wall; get stuck; can’t do it; need help in an unfamiliar place with unfamiliar people. That’s no way to go through life though and I do fight it as much as I can. I especially hate travel – that just seems to click all my cp buttons. I like being places though so every holiday planned is a love/hate/fear three act play. Never regretted going anywhere though!

I went through the worst of it before having my children – and I’m so glad I did. Having children is such a physical endeavour – in every way – and I found a lot of it painstaking! 52 poppers to change nappy / vest / baby grow. I wouldn’t bathe either of them as babies- my husband did it until they could sit up and don’t even start me on car seats and buggies!! My son, as a baby, would instinctively roll towards my dominant hand when I went to lift him from his cot. That always made me smile.

They are both now teenagers and help me in so many ways daily. My daughter stopped me from referring to my ‘bad hand’. She said I shouldn’t talk about it that way.

So now as an adult the challenges are different. I don’t want to restrict myself because I’m scared I can’t do something immediately and comfortably. No one ever said no when I asked for help and no one should ever feel too proud to ask for help when they need it – whether it’s carrying drinks back from the bar or talking about mental health – there’s always someone who will listen and move you on a little.

In the last year I’ve tried to take far more pride in what I can do rather than focus on what I can’t. I feel more connected to my body and I try to develop that connection in the gym and on walks so I can take pride in the progress I make (feeling wee, hard muscles on my cp side following my shaky efforts in the gym gives me total joy!). So for my final blog of CP Awareness Month I’m going to leave you with my top tips:

  • Develop what you can – maintain what you can. Move as much as you can.
  • Take help when you need it – don’t avoid experience and never make a decision based on fear
  • Talk about mental health. Saying you’re feeling anxious today should be as natural as saying ‘ you’re getting cold’.
  • Get in touch with CP Scotland. Their support, warmth, knowledge and kindness is amazing
  • And finally, always carry hand gel if bannisters are a necessity for you lol

Living as a person of colour with cerebral palsy – Ruthanne Miller

Hello, My name is Ruthanne Miller, I’m 26 years old and I am from London, I have Diplegia, cerebral palsy.

I also have chronic pain and as a person of colour in my personal experience when I tell medical professionals that I am in pain I feel like they do not understand my condition or severity, and they imply it’s in my head. This is because as I am diplegic but able to get to my local doctors without need of my chair, they see me as capable and express dismissive actions. In order to combat this I have utilised my PA’s to come with me to my appointments which helps express the gravity of the situation.

When not in pain I love to go to concerts with my friends. Sometimes it is hard to socialise, it can be a challenge to make new friends, my social group *SHINE* put an end to this and I’m excited to see them again. I like to bring awareness to cerebral palsy and other disabilities on social media as I believe awareness is key.

In the future I would like to work with children with disabilities, as one of my most fond memories is enjoying time with my teaching assistant and them helping me in my starting steps to life. Towards this goal I have completed my level one Maths and English at college and will soon start my level 2. I used to see revising as an obstacle but as I have set a goal That I WANT I know that I can get it done which makes studying and growing somewhat fun.

As a black person there are certain stereotypes you have no choice but to overcome such as, “Your strong don’t talk about how you feel” this one is a very self-destructive and mentally draining.

Another thing they say is … “You have no choice but to outperform everyone else if you want to even slightly stand out” this gives you a feeling of no self-worth and makes it hard to appreciate yourself and your achievements. I make it my duty to surround myself around positive people, which in this day and age is like a needle in a haystack – so I’m thankful for who I have.

I think that more education should be taught in schools about all disabilities not even just cerebral palsy and the fact that not all disabilities are visible. In the future,  I hope to see a more inclusive society and better understanding of what Cerebral Palsy is in adults, I can’t wait to see this day.

Christina’s academic journey as a person with Mixed Cerebral Palsy

As part of Cerebral Palsy Awareness Month, Christina shares her experience of education as a person with mixed cerebral palsy. 

As part of Cerebral Palsy Awareness month, I would like to share my experiences of education and the challenges I have had to face. I was diagnosed with Mixed Cerebral Palsy when I was 2, now 26. Throughout nursery and primary school, I received educational support to help with subjects like maths and English. However, this stopped before I got into high school.

Transitioning from primary into high school is difficult for both neurotypical and neurodiverse students – new friends, teachers and subjects can be overwhelming for us all but for me it felt like a nightmare. I found it difficult going between classes, corridors full of students pushing and shoving to get to class on time. I do not use any walking aids, I am VERY clumsy on my feet which means I am prone to falls. Amongst all of that, I struggled with the change of teachers due to the various teaching styles. I had maths teachers who would get frustrated and angry if I did not understand an equation and would sometimes shout. This always made me feel uncomfortable and embarrassed as some students thought I was “DUMB” and my teachers thought I did not study. I had to constantly explain “I have Cerebral Palsy” and “please be patient with me”.

This was sometimes ignored. One teacher told me… “I would never make it in life”. Most days I would go home in tears… school became such a negative place. Those comments have always stuck with me and made me doubt myself. I became extremely anxious about going to school which ended up effecting my mental and physical health. This had an effect on my exam results to which I failed most of my exams.

However, not all teachers were bad in fourth year, I had an amazing English teacher who would always make sure I understood my work and took time to go over anything if I needed it. He made the time to listen to what I had to say and was very patient – I will be forever grateful for his support. The music department was the place I felt most comfortable and where I would spend most lunchtimes. I was a member of the school choir, took part in various competitions and always enjoyed singing for our local community.

Once I finished school I went to college and then university to study music. I have a BA(Hons) in Popular Music and will hopefully receive my dissertation marks for an MScR in Music. I am looking at PhD applications and hoping to apply soon! Though education continues to be a challenge, I would like educators to receive training about the different types of Cerebral Palsy and how it may affect individuals learning abilities.

If you are a parent or carer supporting a child in education, there’s is a range of organisations you can go to for support and advice.

If you are thinking about raising awareness of cerebral palsy in your school, we have a short powerpoint presentation aimed at primary school children explaining cerebral palsy and how it affects each person differently, you can find this here.

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.

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.