Cerebral Palsy Scotland

Barry’s holiday to Sandpipers Southport

As part of Cerebral Palsy Awareness Month, Barry shares his experience on a recent respite holiday to Sandpipers in Southport. Barry is currently writing his own e-book that will be published online to raise money for Cerebral Palsy Scotland.  

Who I am.

My name is Barry Smith, and I am 45 years old, with Cerebral Palsy which is a physical disability, down to me suffering from I am in a Power wheelchair, and I use an SL50 Lightwriter. I live by myself, but I get support for the things I couldn’t do for myself.

Going on a respite holiday

On the 12th of February of this year, I got a cab to Irvine railway where I booked the ramps to let me get on to the Glasgow Train by myself, I had my bag on the back of my wheelchair with everything I needed for the week in it. When I was doing this I remember I felt so happy. As soon I got off the train in Glasgow, I went for the London train before I did this I asked if could I go to first class because the staff on the train came round to ask do you want food and drink, When the person came to ask would I like anything I typed on my lighterwriter by using my big toe, this is because I hurt my fingernail one day before this and has a bandage over it, down to me doing this it is hard to type on my communication aide what I want to say to them.

When the train man came I asked if could I have a coffee and can he could put my straw into it for me. When I was on the train for about two hours, my stop was Wigan North Western then I had a sort five five-minute walk over to Avanti West to get my last train on to Southport, by this point I was feeling so happy. As soon as I got over to the next train I was told by the train man the train wasn’t on to Southport because of this we were going to put a bus service on to Southport. About an hour later, I got to Southport. As soon as I got off the bus in Southport, I made my way to Sandpipers by walking because I had been in Southport for four years, I noticed some of the shops and the pubs have closed down.

Picking the right room is a big part of having a great holiday. Here is a guide to the rooms at Sandpipers, including their many features and facilities, to help you make the ideal choice. Revitalise Sandpipers offers full board accommodation on the shores of Southport Marine Lake. Take in lovely water views, go for a dip in the hydrotherapy pool or simply enjoy the newly refurbished R Club Lounge and restaurant.

At the end of the day, retreat to your fully accessible room. All en-suites have wheel-in showers and there are also two separate bathrooms for assisted bathing with hoists and bariatric equipment, and Arjo baths.

Amenities and Accommodation

  • Heated indoor hydrotherapy pool
  • Licensed bar and entertainment area
  • Hair and therapy salon*
  • Internet access and WiFi
  • Sun terrace with balcony overlooking the Marine Lake
  • Gardens
  • Souvenir shop
  • Full board only
  • 30 single rooms
  • 4 twin rooms
  • All rooms at ground level
  • En suite accessible shower room
  • Call system
  • Television
  • Pressure relief mattresses
  • Airflow mattresses
  • Profiling beds
  • Overhead and manual hoists

You can find more information on respite holidays at Sandpipers here – Sandpipers | Revitalise

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.

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.

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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