Cerebral Palsy Scotland

Cerebral Palsy is different for everyone- Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her experience of growing up with cerebral palsy and her mobility. 

I was diagnosed with CP at ten months. My gran, a mother herself to six children, saw that I only ever reached for things with my right arm even when my left was closer and pointed it out to Mum.  My mum, a mother for the first time with me and aged 25, took me to the doctor. The diagnosis came as a shock.

I’m hemiplegic with my whole left side affected. My affected arm hangs at a slightly odd angle and won’t fully straighten or lock. I can’t straighten my hand palm-up and I have poor fine-motor skills on that side. My hips are tilted, as one side of me is shorter than the other, and my left leg is much weaker than the right. My ankle doesn’t move well; my toes hardly at all. I limp to varying degrees depending on how tired I am or how stiff I feel.

I didn’t walk until I was two – actually pretty good I think having spoken to some of the therapists at CP Scotland! My sister had arrived 13 months after me and we started to walk around the same time – she mastered it pretty young. A relief to my mum who up until then often had a baby under each arm!

I had a lot of hospital appointments and a lot of physio. As I grew, I had a great fold across my back as my dominant side grew more rapidly than the other. Mum and the doctors watched it carefully – unsure whether the left side would catch up. There was talk of operations – each sounding pretty gruesome to be honest.

I did step-ups by the thousands, walked lines for balance, had a built-up shoe for some time in primary school and squeezed squash balls to build strength in my arm and hand. I did none of this with grace or patience! My mum made sure exercises were done despite my protests and I will be ever grateful to her for it! I was regularly reminded to ‘put your foot down!’ as I would habitually walk on the tiptoe of my left, affected side. Likewise, I was regularly reminded to loosen my arm which would often curl up into my chest.

My left side caught up, however, and gradually the talk of surgery stopped. Physio and hospital visits continued right the way through childhood and I was always encouraged to do as much as I possibly could – to find a way. As the eldest of five there was always plenty of support and helping hands too!

I have to shout out my dominant side though. It’s something else! On that side I’m strong and dextrous. I would arm-wrestle boys at school and win; on my second attempt throwing a javelin I won a County Competition. I remember a PE teacher at school saying if both sides were like my right I’d be in the Olympics, hahhahaa! Maybe not quite but a nice thought.

Cerebral palsy is different for everyone. No one’s story will be the same anyone else’s. My two sides make me feel like two bodies in one person. One part which is vulnerable and babyish in what it can and can’t do – and one part which is strong, dependable…and could pretty much punch through walls if it needed to. It can be hard to know which you are sometimes.

There’s lots and lots I can do and I don’t think my disability is obvious to people who meet me. But in any given day I’ll make a hundred different modifications to daily tasks. There’s so much I do that’s a little bit different and a little bit harder. When joints are sore (my ankle and foot are the main problems for me) it can make me grumpy and tired.

Over March I’m going to share some of the changes or considerations I make every day to manage what I need to do. I also want to say thanks to the many, many friends and family who help again and again. I want to show some of them off too. I’d like to share a bit about CP and mental health – and also what I’m doing now to maintain movement and physical strength and mobility – particularly to protect my dominant side, which does so much more than it should have to.

Here’s our latest news

Our latest newsletter is arriving in supporters’ letterboxes soon. In this edition you can find out how our team of specialist therapists helped support Jack and Dixon, two boys with cerebral palsy who are working hard to make the most of their abilities.

Read our Spring 2024 newsletter

You can also read about how our therapists worked with staff at a care home for people with physical and learning disabilities, to help one of the residents move well and maximise their enjoyment of participating in different activities.

The newsletter also highlights how we’re raising the voices of people with cerebral palsy for Cerebral Palsy Awareness Month in March, how we are supporting people’s mental health through developing our psychology support service, as well as letting you know about different ways we can provide information and advice to people with cerebral palsy and their families.

Plus, there’s also lots of information about different ways you can donate or fundraise, so that we can keep supporting people with cerebral palsy to thrive.

Read our Spring 2024 newsletter

 

Breaking down barriers to employment – Michael McEwan

As part of Cerebral Palsy Awareness Month, Michael shares his experiences of employment as an adult with cerebral palsy. 

March is Cerebral Palsy month, an opportunity to raise awareness for those all ages with lived experience of Cerebral Palsy(CP) across Scotland, showing the diversity of the CP community and share what matters to us all.

Every day is about raising awareness of disability, when we talk about various disabilities it’s not just a label, it’s important to look at the person, not the disability and focus on ability.

One of my biggest passion is employment for those with disabilities, the sad reality is the gap is getting wider, we may be aware in families or community, those people who would love to get a job, but not given the same opportunities.

According to the National Office of Statistics report last year, there were 53.6 %  with disabilities in employment, compared with 82.5% without disabilities.

In 2020 the employment rate was 53.4% so very little growth or development in four years, with existing barriers , employers should look beyond people disability, and look at what a candidate can bring to the job.

Because as we know all we have all got some kind of talent we just need a change to showcase and ok people may need a bit of support but we all need a bit of support one way or other.

I have experience of my struggle into employment, each time I met barriers, I was more determined to prove people wrong, many doubted I’d become a journalist but here I am, not the conventional route, but as freelancer I can make my own career, and still focus on my advocacy work.

My advice is never lose focus on what u want to do in life, from an early age wanted to be a journalist, was told by many people it’s not the job for me, twenty years on, that’s my chosen career and I love my job.

I often wonder if I didn’t have a disability then would my path have been shorter and easier, but then perhaps I wouldn’t have the same determination.

Society now  is opening doors slightly for people with a disability, but when we talk about employment there are many barriers, I didn’t realise we would be talking about this in 2024, when I speak at different events , the story is the same.

In reading this article I would like employers to acknowledge the need for change, see people for their own merit and don’t just categorize them.

If you are an employer and would like to better support people with disabilities at work,  please visit – Talking about disability – Supporting disabled people at work – Acas

Joseph’s journey: living with Dyskinetic Cerebral Palsy – Danielle McKay

As part of Cerebral Palsy Awareness month, Danielle shares her experiences as a parent of her son Joseph who has cerebral palsy.

Our son Joseph was diagnosed with dyskinetic cerebral palsy when he was four, he’s now 6. He loves going to football games and riding his bike and has the cheekiest outgoing personality.

There are many causes for cerebral palsy, in Joseph’s case his brain temporarily didn’t get enough oxygen (asphyxiation) during a difficult birth. An MRI confirmed permanent brain damage when he was a few days old.

Cerebral palsy can affect movement and muscles (e.g. tongue, lips and jaw) needed to produce speech. Joseph can verbally communicate most of the time but also uses others ways to communicate like sign language and symbol pictures as he’s not always understood. The biggest challenge is when Joseph is upset when he’s not understood, this can be really difficult when he becomes upset and frustrated. But his speech is becoming clearer ever day and has constant support from his speech therapist. Even his friends and school teacher love learning sign language too which makes Joseph feel even more included and boosts his self esteem.

Joseph has difficulties with fine motor control in his hands and can struggle to do certain tasks, like dress himself or open book pages but Joseph has a great occupational

therapist who always makes sure we’re doing activities and he is smashing his goals.

We were very lucky to attend Cerebral Palsy Scotland Fife Outreach programme for one week of intense therapy last year. It was the first time Joseph was able to use a fork and knife all by himself cutting up things. He looked at me with the biggest smile on his face. It was the best feeling. It highlighted the fact that he can achieve anything he put his mind to, the experts at Cerebral Palsy Scotland gave him all the tools and support he needed to achieve this. I really admire the passion the therapists at CP Scotland have, we felt so lucky to have this time with them. We learnt so much about Joseph we didn’t know before. Joseph called the therapy rooms the games room and couldn’t wait to go back.

Joseph is loving his local mainstream school and has the most amazing group of friends. He’s absolutely thriving and loving life. His friends are so supportive and understanding of Joseph. I feel it’s really important to talk to children about different disabilities and as a parent I would always welcome any questions that any adult or child had and encourage parents to speak to their children about disabilities. I would say to other adults not to be scared or feel judged, children are curious too and that’s okay! It’s okay to not know the answer, not even us as parents know the answer sometimes! Just being open and honest can be super helpful and we can all learn from each other.

 

It can sometimes feel lonely parenting a child with a disability and you can often wonder if you are making the right choices and stuck worrying about the future. Trying to be as open as possible and seeking support when you really need it I feel is important. ❤️

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Cerebral Palsy Awareness Month – Make your voice heard

March is Cerebral Palsy Awareness Month. Keep an eye on our social media channels, where across the month  a team of volunteer content creators will be sharing their lived experience of cerebral palsy – talking about their day-to-day lives, and sharing tips and thoughts on what needs to change so that every person with cerebral palsy can achieve their potential.

Be a part of the change this March

  • Like, share and comment on the content from Cerebral Palsy Scotland on your own social media channels – we want as many people as possible see the content so we can raise awareness of cerebral palsy
  • Create your own content on social media for Cerebral Palsy Awareness Month – be sure and tag us in your post, and use the hashtags #TeamCPScot and #CerebralPalsyAwarenessMonth
  • Raise awareness at your school by hosting a class session or assembly. Download our short PowerPoint presentation aimed at primary schools, explaining what cerebral palsy is and how it affects each person who has it differently. You can also visit our All about cerebral palsy webpages for general information.

Get moving for March – join our Walk ‘n’ Roll virtual challenge

Why not get moving for March and join our Walk ‘n’ Roll virtual challenge. Set yourself a challenge in a way that works for you – using your wheelchair or powerchair, walking frame, frame running bike, trike, feet, or body!

The Walk ‘n’ Roll challenge will help to raise vital funds to power our work so that every person with cerebral palsy in Scotland can reach their full potential.