Cerebral Palsy Scotland

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.

Talking to my child about cerebral palsy

This information leaflet written by our Chartered Psychologist, Dr Kirstie Rees, gives parents advice and guidance on how to talk to their child about cerebral palsy.

The leaflet covers:

  • Why it’s important to talk to your child about cerebral palsy
  • When and how to talk to them about cerebral palsy
  • Using the right approach for your child
  • Developing your child’s coping skills

Read ‘Talking to my child about cerebral palsy’

How my cats help me

In this blog, Barry talks about how important his pets are to him, the impact of losing his cat Ruby, and getting new kittens.

Who I am and why I am writing this

My name is Barry Smith, and I am 44 years old, I have cerebral palsy which is a physical disability. Down to having this, I am in a power wheelchair, and I use Lightwriter which is a communication aid. I  live by myself. Four weeks ago I saw my nine-year-old cat was very ill so me and my Mum took her to the vet with one of my P.A.

The outcome of seeing the vet

When we saw the vet she saw Ruby were ill. The vet told me there were two things we could do, which are send her for blood tests or put her to sleep, she was at the vet the week before with the same thing. I asked the vet what would you do if you were me. She told me I would personally put it to sleep because she was in so much pain, As soon as I heard this I asked the vet can you do it today. I loved her so much I didn’t want her to be in any pain but could I have a few minutes to say goodbye to her. The vet were happy to do this for me. When I had a few minutes with my sweet Ruby I thanked her for being my cat and told her to go off to the sky without any pain but felt so sad. The vet asked do I want her pawprint. I said yes please and she then asked do I want her ashes back in a little cat vase I said yes please because she would be coming home with me.

Saying to to Ruby my cat and how I felt

When the vet came back into the room and my mum petted Ruby I were heart break because I knew I wouldn’t be able to pet her again. The vet put it in to send her to sleep. I were so upset and I cried which isn’t like me but I knew she had a happy life. As soon I came out of the vet I knew I wanted a little kitten but I knew I needed time to get my head around what happened to my little Ruby. As soon I got home I knew I wanted a little kitten.

Twelve days later

I got a 8 week kitten, but this time it was a little boy who was a black and white kitten, same as Ruby. As soon as I saw him I loved him but I had no name for him for five days, because I wanted a name I could say and people could understand what I was saying without me using my communication aid all the time. The next few days I play with him and I work out how I can give feed myself.

I personally remember feeling like I won the lottery because I felt so happy, but I still miss little Ruby. Then I thought to myself what do you think Ruby would tell me to do she would think “Standing by your boy kitten and give him all the love you gave me over 9 years.” Just then I said a name so everyone could understand what I was saying what was Leaon, I like that name so I called him Leaon and I can say it Leaon and I love him so much. A few days later I made up my mind to get one more. At first I was going to get a boy but got a girl and call her Amy. Now my family is my kittens and I love them so much although Ruby will always be in my heart.

Our latest policy update

At Cerebral Palsy Scotland we continue to advocate for policy change at national level, pressing for everyone with cerebral palsy to have life-long access to knowledgeable, compassionate services and support.

Over the course of 2023, Cerebral Palsy Scotland participated in a number of umbrella bodies and organisations to raise the profile of the needs of people with cerebral palsy to service providers and policy makers.

As Chair of the National Advisory Committee for Neurological Conditions, our Chief Executive has steered the committee to encourage Scottish Government to continue to support the implementation of the Framework for Action for Neurological Conditions (2020-2025) and to begin identifying future priorities once the funding for the Framework has finished. Service providers across Scotland are being encourage to self-evaluate their services against Health Improvement Scotland’s General Standards for Care and Support for People with Neurological Conditions and submit their findings to Scottish Government by the end of March 2024. Cerebral Palsy Scotland will be conducting our own evaluation of our services, (so keep any eye out in the New Year to see how you can contribute to this work).

During the year Cerebral Palsy Scotland have also worked with the Managed Clinical Network for Children with Exceptional Healthcare, to look at how children with CP transition into adult services, the Health and Social Care Alliance to support their self-management programme and the Neurological Alliance of Scotland, who, following survey work, have drawn up five recommendations regarding the need for those who support people with neurological conditions to consider mental health and wellbeing needs within services.

Our Chief Executive has met with Ministers and officials, both in Edinburgh and London to discuss health data and the identification of people with CP. Together with other cerebral palsy organisations across the UK, we continue to call for the NICE guidelines for adults with CP to be implemented. (It is possible that the self-evaluation of services in Scotland will provide evidence that this should be addressed with some urgency).

Cerebral Palsy Scotland Look to contribute to government consultations as they arise. This year we have submitted evidence to the UK government on their Disability Action Plan and the SEND Improvement Plan. We have submitted evidence to the Scottish Government regarding the development of the National Care Service, the Adult Disability Payment (mobility component) and to the Scottish Parliament’s Economy and Fair Work Committee on the employment gap for disabled people. We have met with Social Security Scotland to understand how children in receipt of disability support payments transfer to adult disability payments.

The Scottish Covid-19 Inquiry has been in touch on a number of occasions throughout the year as they are keen to include our experience of the pandemic and the impact the restrictions had on people with CP and their families in the Inquiry. We have provided written evidence, our Chief Executive gave oral organisational evidence and we are meeting with the team preparing for a set of hearings on education and certification shortly.

All of these are issues that we will be continuing to monitor during 2024 to ensure people with cerebral palsy are represented and acknowledged.