Cerebral Palsy Scotland

Celebrating and Raising Awareness on World Cerebral Palsy Day

Bernie at the SSE Hydro on World CP Day

World Cerebral Palsy Day on 6 October 2019 and the #GoGreen4CP campaign was a roaring success – thank you to everyone who took part!

World Cerebral Palsy Day aims to spread awareness of cerebral palsy and shine a light on the cerebral palsy community in Scotland and around the world.

We hope that Bobath Scotland supporters enjoyed the celebration, whether it was lighting up local landmarks, wearing green, or taking to social media to spread the word and using the #GoGreen4CP and #WorldCPDay hashtags.

#GoGreen4CP

Across the world approximately 215 venues turned green – the international colour of cerebral palsy – on 6 October. Thank you again to the amazing venues in Scotland that joined the #GoGreen4CP campaign and turned green on Sunday night!

  • Maryhill Burgh Halls
  • SSE Hydro
  • Paisley Arts Centre
  • Ness Bridge
  • Mareel Cinema, Shetland
  • Prestonfield House
  • The Witchery by the Castle
  • St Andrews House
  • Victoria Quay

Marathon Fundraiser on World CP Day

Cheryl and Gary Stewart

Sunday was also a special day for Cheryl and Gary Stewart, who completed their first ever marathon around Loch Ness! They were inspired to run in the event because their twin daughter comes to the Bobath centre for therapy. The pair raised an incredible £1526.00 for Bobath Scotland and deserve a heartfelt congratulations for completing this wonderful accomplishment together. You can still donate to their fundraising campaign online.

Businesses and Supporters Go Green

Walter Scott Bake Sale

On Friday, several workplaces in Scotland also took part in early celebrations and fundraisers for World CP Day.

The EnviroCentre staff in Glasgow all dressed in green on Friday, and Kay at Walter Scott in Edinburgh hosted a fabulous bake sale for 150 guests! Both events were a huge success, raising both funds and awareness for CP and Bobath Scotland.

Wearing Green

Over the weekend Bobath Scotland supporters donned their green to mark the occasion and spread the #GoGreen4CP word, sending and sharing pictures across social media. Everyone looked great – thank you for participating and sending us your pictures!

Take Part in 2020!

It’s not too soon to start thinking about next year! If you know of a venue, group, or workplace that can get involved in World Cerebral Palsy Day 2020, let us know! Contact our Community Fundraiser madeline.pleming@bobath.scot 

Cerebral Palsy Scotland Conference brings CP community together

The sixth Cerebral Palsy Scotland Conference and Exhibition brought together a record number of delegates to discuss key issues facing the cerebral palsy community.

Robert Softley Gale and Jack Hunter

Held on 3 October at Hampden Park, the conference is Scotland’s only event focussing on cerebral palsy (CP) and aims to bring together all people with experience of CP – either directly, through family or professionally.

Over 300 people registered to attend the day, which was organised by Bobath Scotland and supported by Digby Brown Solicitors. And over 40 exhibitors had the opportunity to showcase specialist equipment and services to the CP community in Scotland.

The keynote presentation from Dr Joy Nisbet highlighted her recent report into the lack of available mental health support for people with CP and the continuing work at Bobath Scotland to ensure all the charity’s services are “psychologically informed”.

Kenny Thoms session

Workshops on the day covered topics including access to healthcare for girls and women with CP, discrimination in employment, reflection on walking aids, research into static versus dynamic standing for people with CP, and resources for communication. There were also a number of practical sessions including a boccia taster, a pre-school play session run by Bobath Scotland’s therapists and a dance workshop.

Robert Softley Gale, Artistic Director at Birds of Paradise Theatre Company, and actor Jack Hunter closed the day with an entertaining interactive discussion on representation of disability in the arts.

Commenting on the conference, Stephanie Fraser, Bobath Scotland CEO said:

Exhibition

“At Bobath Scotland we work hard throughout the year to deliver individual intensive therapy, therapist-led groups and other services to support children and adults with cerebral palsy.

“The Cerebral Palsy Scotland conference is a highlight of the year.  It is an important opportunity for us to host a day of discussion and knowledge sharing that brings together the whole CP community; the event remains the only one of its kind in Scotland to focus exclusively on cerebral palsy.

“The atmosphere throughout the day was really positive.  We are privileged to work with Digby Brown Solicitors in developing this event over the years and we are extremely grateful for their continued support. The conference would simply not have been possible without them.”

Access Presentations from Cerebral Palsy Scotland Conference 2019

PowerPoint presentations from the conference are available below, with more added soon:

Husband and wife run marathon on World Cerebral Palsy Day to raise funds for Bobath

Chery and Gary Stewart and family

A husband and wife team from Larbert who have a twin daughter that comes to the centre for therapy are running the Loch Ness marathon on 6 October in aid of Bobath Scotland.

Cheryl and Gary Stewart chose to run in the event because it falls on the same day as World Cerebral Palsy Day.

And to show their support, Highland Council will be recognising World Cerebral Palsy Day by lighting part of the marathon route green.

After a tricky twin pregnancy Amber and her sister Harper – now three years old – were born 10 weeks early.  Just before her first birthday, Amber was diagnosed with cerebral palsy, a physical disability that affects movement and posture.

Cheryl said: “We quickly had to adapt to life which included daily therapy, hospital appointments and some very steep learning curves.

“Amber was lucky enough to be granted a fully-funded therapy block at Bobath Scotland last year.  This came at a time when we were feeling a bit overwhelmed with all the support Amber needs.

“Bobath showed us how to bring all her therapy requirements together and incorporate it into everyday life.”

The pair have never run a marathon before, but when they realised the Loch Ness Marathon and World Cerebral Palsy Day shared the same date, Cheryl said it “sealed the deal” for them to take the challenge on.

Cheryl added: “We’re running the marathon in the hope we can give others like Amber access to the amazing therapists at Bobath Scotland. Amber loves coming to Bobath – the therapists make it so fun. It’s also been amazing for us as parents – the sessions give us confidence, skills and ideas to help Amber participate in things and to get Harper and Amber playing together.

“Amber loves stories and reading, and the therapists showed us how to incorporate that interest into the therapy. Although her biggest limitation is her upper limbs, within a few sessions at Bobath the therapists had Amber turning pages of a book by herself, which was such a great motivator for her.”

On 6 October along with hundreds of other runners, Cheryl and Gary will cross Ness Bridge in Inverness, which forms part of the marathon route. And in recognition of World Cerebral Palsy Day, the Highland Council will be turning the lights along Ness Bridge green, the colour that is internationally associated to the condition.

A spokesperson for the Highland Council said: “We are delighted to be participating in World Cerebral Palsy Day’s global #GoGreen4CP campaign, which will see cities in 75 countries lighting their landmarks green to raise awareness of the condition.

“We are proud to support World Cerebral Palsy Day, and we wish Cheryl and Gary the best of luck for the marathon.”

Virginia Anderson, Head of Fundraising at Bobath Scotland said: “We cannot thank Cheryl and Gary enough for committing to this marathon to raise money for us. We are really excited that they are undertaking this run on World Cerebral Palsy Day, which makes this challenge even more special.”

You can donate to Cheryl and Gary’s fundraising campaign here: https://www.justgiving.com/fundraising/cheryl-stewart7

Celebrating World CP Day – 6 October

On Sunday 6 October 2019, 75 countries will join together to recognise World Cerebral Palsy Day. Find out what Bobath Scotland is doing to support the day, and how you can contribute and participate.

Coordinated by the World CP Initiative, World CP Day aims to ensure that children and adults with CP have the same rights, access and opportunities as anyone else in society.

As a World CP Day partner, Bobath Scotland agrees with the World CP Initiative that, even though it is the most common physical disability in childhood, cerebral palsy does not get the attention it deserves. World CP Day is our opportunity to raise cerebral palsy to the forefront in 2019.

Bobath Scotland are supporting the day through a number of initiatives:


Cerebral Palsy Scotland Conference, 3 October

Summer Get Together Boccia session

To celebrate World CP Day, Bobath Scotland is hosting the Cerebral Palsy Scotland Conference and Exhibition on Thursday 3 October at Hampden Park, Glasgow

Now is the time to sign up for this free-to-attend event if you haven’t already done so! For all the details, and to register, visit the conference website.

Supported by Digby Brown, the Cerebral Palsy Scotland conference is for all those with experience of CP. We have a great line up of speakers and sessions this year, including:

  • Almost 50 exhibitors showcasing equipment and services for the CP community
  • Practical sessions: Baby Bobath play session; Boccia taster session; disability-led dance and movement workshop.
  • Joy Nisbet, “Mental health, wellbeing and cerebral palsy”
  • Sonali Shah, “Exploring access to healthcare for girls and women with CP”
  • David Reilly, “CP and the importance of remaining active”
  • Ria Cuppers, “Reflection on walking aids in children with CP”
  • Robert Softley Gale and Jack Hunter – panel session on representation of CP in media and the arts


#GoGreen4CP, 6 October

Summer Get Together Boccia session

As part of World Cerebral Palsy Day 2019, people with CP, their friends and families, together with CP organisations are mobilising to light their towns green on Sunday 6 October and shine a light on children and adults living with CP.

We are excited that 10 buildings in Scotland are already going green for CP:

  • The SSE Hydro, Glasgow
  • Maryhill Burgh Halls, Glasgow
  • St Andrews House, Scottish Government
  • Victoria Quay, Scottish Government
  • Prestonfield House, Edinburgh
  • The Witchery by the Castle, Edinburgh
  • Royal Scottish Academy, Edinburgh
  • Paisley Arts Centre
  • Mareel Cinema, Shetland
  • Ness Bridge, Inverness

Get involved in #GoGreen4CP

If you live near one of Scotland’s #GoGreen4CP landmarks, swing by on 6 October and take a selfie to share on social media. Remember to tag @BobathScotland and use the hashtag #GoGreen4CP.

You can also approach your local landmark with a request to #GoGreen4CP on 6 October. A Go Green4 CP is available to help with the request.

If you’re successful, contact local media and send them a request to promote GoGreen4CP and World CP Day. Share your personal story and remember to acknowledge the landmark owners.

Further information is available on the #GoGreen4CP World CP Day webpage.

 

Fundraise for Bobath Scotland on World CP Day

World CP Day is a great opportunity to raise funds for Bobath Scotland, as well as raising awareness of cerebral palsy at the same time.

World CP Day takes place on Sunday 6 October, but you can host a fundraiser any day in October to mark the event.

Raise for Bobath by holding a green-themed fundraising and education event during October:

  • Get on social media and ask friends and family to donate to Bobath Scotland on World CP Day. Share your story and tell them why Bobath Scotland matters to you. You can start a Facebook Fundraiser to help you do this. If you’re not sure how to set up a FaceBook Fundraiser, just get in touch.
  • Ask your local school to have a green dress-down day with an option to donate £1 per pupil to Bobath Scotland, or ask a person with CP to speak to your class. World CP Day have put together a set of great ideas for schools to help you.
  • Host a green-themed fundraiser at your office, or with pals – what about a green coffee morning or afternoon tea, or a sponsored dress-down day or walk?


We are here to help you! For further support, please contact Bobath’s Community Fundraiser Madeline.Pleming@bobath.scot

Day to day life using AAC

In my last blog I talked about my own and other people’s experiences of getting AAC equipment and support. In this blog, I am going to talk about my day to day life of being a AAC user and people’s experiences of day to day life of a AAC user. 

As AAC user I feel that there isn’t enough awareness of AAC in the public eye.  And also I have a lot of people asking me about my AAC device and what I can do with my device. So from writing this blog I hope that I can make more awareness of AAC and give an insight of my and other people’s life of being an AAC user. 

As an AAC user I find most people is fine talking to me, like talking me as a normal person and give me time to speak, really understand me and just talk to me. I guess this makes me feel good because I like to know that I can talk away to people especially strangers.  But on the other hand there are people who  doesn’t talk to me  or don’t give me time to talk because I use a talker and this makes me sad. But I know this is because of lack of awareness of AAC. 

Like with everything, being an AAC user has its barriers – here are some of them:

  • Like I said before that some people don’t want to talk to me or don’t give me time to talk
  • My talker is a computer so sometimes it breaks down, so this is really difficult especially when I am without a voice for a number of days
  • Sometimes I have something in my head that I want to say but I don’t know how to say it on my device because the word isn’t on my device, but I am quite good at describing things 

 

So being an AAC user does have a few barriers but I work around them. But being an AAC user has its benefits too, quite a lot really.  For a start my talker gives me a voice and it has opened up so many opportunities for me.  Even although my AAC device gives a voice to communicate to the world it also is my hands too for example I can’t use a computer or a phone and work the television but my talker lets me do these things. My talker is a computer, so I can access the internet through my talker and I can link my device to a computer using a cable. I use computer access pages on my device for mouse movements and other computer controls so this allows me to have a job.  

From a young age I always wanted to fight for disabled people’s rights so my talker lets me campaign about things. So even although I have cerebral palsy and find it hard to do things for myself, my talker lets me to do a bit more for myself. I would say my talker isn’t just my voice, it is really my lifeline and without it I wouldn’t be where I am today. 

So that is my day to day life experiences of an AAC user and now let us see what it is like to be an AAC user from a few different people.

 

Marion Burns

Marion uses an AAC device called Mobi2. Marion says that the Mobi has made life much better for herself not just because she can speak out, the Mobi also allows her to text which “it is great for me” Marion adds. 

Marion thinks that there is enough awareness of AAC but she adds “often feel like you are on your own with your machine” 

Marion is very comfortable speaking to people with her AAC device and says “I find everyone very good and speak to me normally – ok you have some who don’t know how to talk to you very well but just take the time. I have had a doctor who didn’t give me the time to speak.” 

But there is barriers which Marion explains, “Sometimes it can be annoying if the conversation moves on and you are still trying to get your point across. I feel that people lose interest very quickly.” 

If Marionwould give someone a guide to how to talk to a person who uses a device, she would say, “You must have patience to talk with someone with AAC equipment – they are often slow because of their disability, but they will always get their message across.”

 

Gavin Drysdale

Gavin has recently started using Grid 3 on a mini iPad. Previously, he used ovaChat8 software on a Samsung tablet. 

Gavin’s device has helped him so much. He says, “I have been using a communication device for as long as I can remember. I couldn’t imagine my life without it. Often it’s my only means of communication as very few people know Makaton sign language”

 Gavin feels that there is enough awareness of AAC but he adds, “I feel there is always more awareness that can be raised. Experience plays a big part in it. If you have met someone who uses an AAC and had a conversation with them, you are likely to be more aware than someone who hasn’t. It’s just about making people aware of AAC as much as possible. Blogs like this can really help.” 

Gavin feels that people are good at talking by giving him time to answer, but he says, “It is always nervous using my communication device for the first time with people who I haven’t had a conversation with before. You don’t know how they’ll react but most of the time it goes well. The first conversation is always the hardest.” 

If Gavin had to give a guide to someone on how to communicate with someone who uses AAC, he would say “Speak to an AAC user how you would speak to everybody else. That’s the best advice I can give.”

 

Bernie Hunter

Bernie uses a Samsung tablet with ‘Nova Chat’ programme. It is a touch screen so she use her hands to operate the device. 

Bernie’s device has made a big difference to her life – she noticed that when she took a break  from her AAC device for a while.  Her device gives her a voice and also it has helped her to take a part in the programme Still Game. 

Bernie’s thoughts are mixed on whether or not if there is enough awareness of AAC. Bernie adds, “It depends on the environment that you’re in. If it’s somewhere like Bobath then it’s fine but if you’re talking about everyday life then no, I don’t think there is enough AAC awareness. I’m saying this because I have experienced people coming up and telling me how lucky I am to have an iPad fitted on my wheelchair as I can watch videos and play games on the go. People don’t realise that the device is my way of communicating, then when I point this out to them they can’t believe it.” 

Bernie feels that people are OK talking to her, but she adds “Generally people are okay with me, yeah I do get people speaking slowly to me as they think that I can’t understand what they are saying to me. A lot of times people will speak to whoever is with me (Support Assistant) instead of talking to me directly, this really gets to me.” 

Bernie used to be shy talking to people using her device but she says is fine now. 

There are some barriers for Bernie using her device. She says, “Using my device in a more effective way, as I said in a previous blog I didn’t get any training on how to use my device so I’m very slow at using it to communicate, I find I’m using the keyboard more than the actual vocabulary programme which isn’t ideal.” 

If Bernie would give someone a guide on how to communicate with somebody who uses AAC, she would say “Don’t butt in when the AAC user is talking, don’t finish sentences for them and don’t take over if you’re supporting someone who uses AAC, they are quite capable of communicating independently – I come across these issues regularly and it’s really annoying.” 

From my own experiences and Marion, Gavin and Bernie’s experiences, it shows that AAC does make life much better and opens up many opportunities for people who require AAC. But there are barriers using AAC, like not having the right equipment and also people sometimes not knowing how to talk to an AAC user. This is down of lack of awareness of AAC. Communication is key to everything and everyone has the right to speak, so having some more awareness of AAC will make life better for everyone.  So, for the future I hope there will be more awareness of AAC.