having early access to powered wheelchairs which give children the chance to independently move.

It is a commonly held belief that powered mobility can limit a child’s physical/gross motor skills, literally prevent them from learning to walk independently. This theory is proved wrong time and time again and at Pace we advocate for our children to have access to powered chairs as soon as possible. A power chair can enable a child to independently turn around and look to see what is behind them, to change their view when they want to, to make decisions on where they want to go, to be social.

Our friends at Whizz Kidz say:

A lack of independence can create a sense of decreased motivation, reduced confidence and bring an overall feeling of frustration.  Research shows that disabled children should be given a wheelchair as close as possible to the age when mobility would occur naturally.

Being independently mobile encourages an ongoing cycle of development, in all aspects of a child’s well being.  As a leading researcher has said, ‘Independent mobility becomes ability … the ability to become a social person rather than a passive observer; the ability to choose which parts of the world you want to explore rather than have them chosen; the ability to test out your environment by defying authority.’ (Whizz Kidz, 2012, p.1)

John using his chair

Pace are currently working on a special project with Remap to develop a wheelchair simulator that also works with virtual reality! This is a very exciting project that gives greater opportunity for those most affected by motor disorders to learn power chair skills.  We are also looking into renovating two power chairs so that we can fix a child’s current specialist seating to the chair.

This simulator will enable students to have access to power chairs and learn how to use them before their competence is assessed. Children who have never had the opportunity to learn to use a powered chair will not pass the test to be a ‘safe and competent user’.  It would be like testing a person learning to drive a car on their first moment behind the wheel! Can you imagine? This project will give them the skills they need to pass that test so we can start rehabilitation as early as possible.

So, if you have a child who struggles to move then we encourage, alongside working on their motor skills (walking and moving), you also empower independent movement through the use of powered mobility.

by Luke Thompson

Photo: John using his chair

an amazing way to celebrate and show pride in the lives and achievements of those with the condition and the people and organisations that support them.

As part of the celebrations, Pace were honoured to welcome a visit from Nicolas “Nic” Hamilton, the British racing driver who currently competes in the British Touring Car Championship. Nic’s aim is to inspire both able-bodied and disabled individuals to strive to achieve their life goals and aspirations, regardless of their current situation or struggles and to show that they can be achieved irrespective of how big or small they are. As part of World CP Day, he came along to a Pace assembly on Monday 7th October.

Nic was born with CP and like the young people at Pace, he continuously strives to achieve more in life and his career. As Nic spoke to the students it was clear that there was affinity between his approach to life and the ethos of Pace. His absolute positivity and determination to overcome the challenges he faces every day to compete against able bodied drivers was palpable.

He gave over an hour of his time talking to the students and staff: covering the bespoke design of his modified car, his achievements to date, his challenges and his dreams for the future.

Dressed in green (the colour of CP awareness), the young people had some fantastic questions for Nic with one of them even asked him for a race.  He inspired them with his stories, and it was very clear that the young people at Pace also inspired him!

“Our primary aim at Pace is to help our children achieve their full potential and become as independent as possible, now and in the future. Nic is such a powerful example of what is possible, and he not only shared his story but he encouraged, coached and empowered our young people during his time at Pace – he’s had such a positive impact – and we are extremely grateful.”

you’re onto something. When your third day is spent with some of the most incredible children you’ve ever met, you absolutely know this is the best place to be! My name is Amy, and I joined Pace’s fundraising team 1 week ago.

On Friday, I spent what can only be described as a joyful and uplifting day, observing several teaching sessions across Pace. What struck me more than anything is that the children are learning, without even knowing they’re being taught. Playing while practising their sounds; cooking lunch while building motor skills and confidence; setting up dens in one of the classrooms and learning how to support each other and socialise successfully. In just a few short hours, I got it. Teaching is so effective for these children because it’s combined together so brilliantly- the focus of a session may appear to be on the physical side of their disability but at the same time, wonders are being worked on their language skills.

I was lucky enough to observe Harry’s* session. At just 2 years old, Harry is coming in twice a week for support with his physical development as well as his speech. The swing that Harry loves so much, was an amazing device to get him practising his sounds. But it’s not just about Harry. His Mum and Grandma, were given a wealth of support during this short hour, and I really felt like the entire family left feeling so much better – physically for Harry after his physio and speech therapy, and emotionally and physically for his devoted Mum and Gran.  It was like a small weight had been lifted and they had vital tools to support Harry not just over the next week but over the coming weeks, months and years.

Such expertise, delivered so calmly and effectively by Pace’s team, is really making a difference and the first thing I said to my husband that evening was ‘I really want to raise a whole heap of money for this place!’ I really hope I do.

To be continued…

*real names have been changed

Amy Billington

Direct Marketing Fundraiser, Oct 2018

was a baby she couldn’t lift her head, both her hands were clenched into fists, her eyes did not respond, she just stared into nothing. She was “a little lump”. That was how she came home from hospital, and we were told that was how she would always be – that there was no hope of improvement and that was that”.

“But we didn’t give up! We found out about Pace and thought there was no harm in giving them a try. And that was one of the most important things initially – Pace gave us hope, which is so important. Parents need to be able to believe in their child and not take what the doctors say as the be all and end all. I remember the first assessment at Pace with Szilvia (Conductor), Julia (Occupational Therapist) and Laurel (Speech and Language Therapist). They started playing with her using bubbles, toys, and other things that appeal to babies and young children, and they began to see reactions. There were indications that she liked one toy more than another. Tiny indications, which might seem minimal for a normal child, but so important for a child like Cerys, showing that there is potential, creating hope”.

Cerys and her family went on to access intensive early intervention at Pace through our PIPS (Parent and Infant Service) provision. The rationale for what Pace provides to families through PIPS is based on powerful neuro scientific research on the link between neuroplasticity and early intervention. Neuroplasticity refers to the way in which neural pathways develop, interconnect and form new connections.

Neuroplasticity allows for environmental influences to change the way in which the brain makes connections, in effect, the way we learn from experience, and is particularly important in relation to cerebral palsy and brain injury because it allows for the “re mapping” of neural pathways where there has been damage to the existing pathways.

Research has shown that levels of neuroplasticity are at their highest in the early months and years of life – a period in which neuroplasticity is at its most active and consequently the brain is most responsive to sensory motor experience and environmental learning. It is these factors which support the scientific basis for programmes of intensive early intervention for children with neurological damage such as our PIPS service. Our programmes offer goal-directed and intensely experiential sensory motor and communication input to mitigate the functional effects of the initial damage to the child’s brain. These functional effects are well illustrated by the difficulties that Cerys presented us with when she came through our doors for the first time.

So what did Cerys and her family do at Pace?

“They worked with our transdisciplinary paediatric team of occupational therapist, speech and language therapist, conductor (a professional trained in working with people with movement  disorders) and physiotherapist in holistic programmes which integrated all aspects of early infant experiences, with a strong emphasis on sensory motor experiences and intensive communication. Her parents learnt how to play with Cerys and not be anxious about rough and tumble. They learnt how to use sensory strategies to arouse Cerys so that she was alert enough to play, learn, laugh and initiate communication and also how to sooth and settle her when it was time to rest and sleep.”

So how is Cerys now?

“She can hold her head up, she reacts to everything, she is bilingual – (mum is German and dad is British – she can understand both languages). She is non-verbal, but she can use her hands and her eyes to make choices and make herself understood using symbols. And she is now being assessed for an Eye Gaze ICT communication system. She is starting to sit up. Sitting, she can be cross-legged with her arms stretched out and her hands on the floor – she has developed enough core strength to do this, and I believe that it’s all thanks to Szilvia, who makes sure, as she is working with Cerys, that she spends as much time as possible not just sitting passively in her chair. Now she can use her hands to grip toys, and the next thing to work towards is being able to  pass things from one hand to the other. And most recently she is even now starting to stand, with her feet flat on the floor. Balance is an issue, and she tends to lean forwards, but she is getting stronger and stronger, and beginning to get a feel for what walking is like.

There will be more and more improvement. Pace is helping Cerys improve her sense of balance by making lots of use of swings, and making all these exercises FUN – working them in with some singing or a game. When the team gets an idea of something she really likes – a particular toy or song – they are able to use this to make her work harder, through play – for example if they want her to roll they can encourage her to roll towards the toy that she wants to play with. This doesn’t happen in the NHS sessions – abilities are assessed in isolation, in an empty room, with no sense of fun, no incentive. What child is going to sit or roll to order when there is no fun involved?

We all really enjoy coming to Pace. Cerys likes seeing Szilvia, who is her main point of contact. Continuity is extremely important – the service is not disjointed as it can be in the NHS. You are not constantly seeing new people and having to spend half the session time explaining Cerys’s needs and re-assessing her. Regular and frequent are also crucial – the input needs to be at least weekly, ideally more, so that at each session you can capitalise on the ones that have gone before – again, not to keep having to restart because there has been a massive time gap since the last session. NHS sessions are every 4-6 weeks if you are lucky, which is really so infrequent it is almost a waste of time – you virtually have to start again each time. They do give you exercises to do at home, but these are not “wrapped up in play” as they are at Pace. The things Cerys does at Pace are fun so she is motivated to do them”.

to showcase how our integrated curriculum, expertise and belief in every child’s ability to achieve, positively impacts on the progression of the children that attend Pace.

“The curriculum is wide ranging and highly effective. Communication, personal and physical development are prominent in all lessons. Lessons are adapted very well so that all pupils can experience a range of subjects at the right level.”

The inspection found that “Pupils make rapid progress against their individual targets. This is because teaching and continuous support from a wide range of professionals accurately meets pupils’ needs.”  and that “Pupils are extremely focused, diligent and resilient. Strong personal development ensures that pupils are well equipped to persevere and succeed”.

At Pace, our core values drive all that we do and we are proud to say that some of the key findings from the recent report reflect those values.

Achievement:   “Staff use assessment very well to identify pupils’ next steps accurately. This, coupled with their high expectations, ensures that work is challenging for all pupils, including the most able. “

Child and community focused: “The care of pupils is at the heart of the school’s work. Staff form strong relationships with pupils that help them to feel safe and happy at school.”

“In class and around the school, pupils’ behaviour is exemplary. They are kind and caring friends to each other and very well mannered towards staff.”

Dedication: “Leaders take time to review the impact of their work and highlight where they need to make improvements to the provision. They have rightly recognised the need to strengthen further the work that they do to prepare pupils for the future.”

Pace were ranked Outstanding in all four key areas:

• Effectiveness of leadership and management – Outstanding
• Quality of teaching, learning and assessment – Outstanding
• Personal development, behaviour and welfare – Outstanding
• Outcomes for pupils – Outstanding

The inspectors report can be read in full here.

part in workshops to explore, describe and test different materials, to use the materials to solve problems and to explore the materials in the dark room under UV light.

The day started with the children hearing the story of how the elephant got his trunk.  The elephant had no trunk and was a very smelly creature and the children were encouraged to use the various materials to solve problems for him.  They needed to make the elephant something to swish away the flies, something to hold water so he could have a wash, and something to reach the different parts of his body to have a good scrub.

The groups came together again at the end of the day and the children shared all the wonderful inventive ways in which they had made objects to solve the elephant’s problems.   A great day was had by all of our budding scientists with lots of hands on exploring and problem solving taking place.