Author Archives: Leigh Mulvihill

Soaring high

Our Innovation Centre are proud to make products that help disabled children to enjoy and experience life alongside their friends. Sometimes the most simple of things make the biggest difference.

Owen’s mum got in touch for some help. Owen loves to join his friends on the swings in the park but sometimes forgets to hold on. Our team at CIC simply converted a climbing harness to fit Owen and to clip onto the swing’s chains, keeping him safe as he soars.

A simple job but one that has made a huge difference to young Owen’s life.

Watch Owen in action

If we can help you with an everyday problem, however big or small, we’d love to hear from you. You can contact us on [email protected].

Book reviews

two little boys reading

Our librarian Jan reviews two new books you can borrow from our postal lending library.

there are things I know book cover

‘There are Things I Know’ by Karen B Golightly

What happens when a man you’re sure you’ve never met before picks you up from your school trip and says you mum has gone to heaven and you have to go to a new school? Well if your mum has taught you The Survival Game, you are good at maths and love computer games surely things will work out OK. Told by 8 year old Pepper who has his own way of looking at the world. Can he work out how to find his mum and older brother and sister? He may love helping out with the chickens and the teachers at his new school but does he really believe his mum is in heaven? There are things he knows and he knows that his mum is not dead. An intense read that keeps you in suspense right up to the end.


eye can write book coverEye Can Write by Jonathan Bryan

This is a very special book written by a 12 year old boy who is unable to talk or write, he has spelt out letter by letter using a spelling board. You can watch him doing it on his blog.

In the book you really get a sense of Jonathon’s love for life. He tells us about the inner world he inhabited before he was able to communicate and how it felt to finally be able to interact with his family and the world around him. He writes with joy about his sisters and his friend at the special school, Will. Jonathon tells us about the long process of learning to use the spelling board and how frustrating he finds eye-gaze technology.

He has won several awards including a ‘Diana Legacy Ward’ presented to him by Princes William and Harry and tells us about his experience of that night. And he writes about ‘Teach Us Too’, the charity he fronts that aims to promote the teaching of literacy to all children, regardless of their disability. We are sure to hear more from this remarkable young man in the years to come.


To borrow both either these books from our library contact Jan on [email protected] or 01267 244203.

An introduction to us

My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.

joshua and emma

Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.

On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.

When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.

It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.

But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.

In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.

However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.

We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.

You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.

Cerebra surfboard goes global

The surfboard designed by our Innovation Centre especially so that disabled children can experience the thrill of the ocean, is making waves on the other side of the world in Japan.

The team at CIC designed the surfboard in partnership with Roger Cooper for children with limited mobility and brain conditions. It allows wheelchair-bound adrenaline junkies to get out of their chairs and onto the water. The tandem design includes a supportive seat for the child and plenty of space on the back for an experienced surfer to steer it in the right direction. They have been a great success providing endless hours of fun to thrill-seeking children who could not otherwise experience the benefits and thrill of catching waves.

Following its successful launch in 2016 the board has been popular across the UK, and now, the world. Cartan McLaughlin, an Irishman living in Japan, bought a Cerebra Surfboard for his own organisation called Sean’s Club. Sean, Cartan’s son, is 10 years old and has Down’s Syndrome and Sean’s Club is dedicated to helping children with Down Syndrome reach their full potential.

They have just held a launch event on Tatadohama Beach in Shimoda, Japan which was a huge success. Cartan McLaughlin said: “It was amazing! A brilliant day. Can I get another board? Many Thanks to the Cerebra Team and especially to Dr. Ross Head – Associate Professor at the University of Wales Trinity Saint David (UWTSD)”.

Dr Ross Head explains that the surfboard is essentially a very large, purpose designed and built board, 12ft long, 30 inches wide and 6 inches deep. This gives it the flotation and stability required for the bucket seat to be positioned on top. The seat is attached via an adjustable laser-cut aluminium wedge which allows the seat to be positioned and angled correctly. This can be altered on the beach between users; the heavier the user, the further back the seat can slide to enable the board to glide smoothly at the correct angle.

To date there are Cerebra Surfboards in Aberavon and Caswell in south Wales, Cornwall, and the Isle of Wight with The Wave Project, one in Larne in Northern Ireland, and now one in Japan. Cartan plans to add another two boards this year, and five in 2019.

Dr Head commented:  “We are so happy and so proud that our surfboard has brought happiness to another bunch of children and to be so far away on such a beautiful sandy beach in Japan adds a magical element to the story. The surfboards are a real work of art and very time consuming to build by the whole team, including Roger Cooper who shapes the board itself. Cartan has already asked if he can order another!”

The team at the Cerebra Innovation Centre are dedicated to designing and making bespoke products that enrich a child’s life, giving them new experiences that wouldn’t otherwise be possible. If you have a challenge for them, get in touch at [email protected]

Special Educational Needs reform in Wales

The special educational needs (SEN) reforms in Wales are now a little under a year away from their introduction. The Additional Learning Needs (ALN) and Educational Tribunal Act was passed in January of this year and will begin to be rolled out from the start of the new school year in September 2019.

What are the reforms?

There will be some significant changes. For instance, as the name of the act suggests, the term ‘special educational needs (SEN)’ will be replaced by ‘additional learning needs (ALN)’. This in turn means the SENCOs will be known as ALeNCOs. School/Early Years Action, School/Early Years Action Plus and statements will disappear and every child with recognised ALN will eventually be issued with a new statutory document called an Individual Development Plan (IDP). This is not to be confused with individual education plans (IEP) which will also be phased out. Unlike statements, which stop when a young person leaves school, IDPs will continue up to 25 years of age if the young person goes onto further education.

The Welsh Government has produced an overview of the new system and has compiled answers to some frequently asked questions: together they will give you a good idea of how the Welsh Government expect things to work.

What happens next?

As the transition to the new system will involve major changes for local authorities, schools and further education colleges it will be introduced gradually and the Welsh Government has produced guidance explaining the timescales involved.

The Welsh Government is also drafting a new code of practice which will be issued for consultation before the end of the year. This is likely to be a rather long document and apparently there won’t be an easy-read version. However, it is very important as it sets out in detail how the ALN system will work in practice and the Welsh Government would like feedback from parents and carers as well as professionals so we will let you know when it is issued.

In the meantime, SNAP Cymru are running some ALN reform awareness sessions for parents and carers in Mid and South-West Wales in November and December.

Get a good night’s sleep with help from our library

Join our librarian Jan (and teddy) as she talks through the different books and sensory equipment we have in our library that could help your child to sleep.

Books on sleep

  • L1676 – Treating Sleep Disorders: principle and practice of behaviour sleep medicine by M L Perlis
  • L6107 – The New Baby and Toddler Sleep Programme by John Pearce
  • L6315 & L6531 – Solving Children’s Sleep Problems: a step by step guide for parents by Lyn Quine
  • L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood by Millpond Children’s Sleep Clinic
  • L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development: its significance and management by Gregory Stores
  • L6367 – A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems by Jodi A Mindell
  • L6392 – Sleep Difficulties and the Autism Spectrum Disorder by Kenneth Aitken
  • L6605 & L6606 – Sleep Better: a guide to improving sleep for children with special needs by Mark Durrant
  • L6694 – The Gentle Sleep Book: a guide for calm babies toddlers and pre-schoolers by Sarah Ockwell- Smith
  • L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children by Gillian Cowdell
  • L6740 – Why We Sleep? The new science of sleep and dreams by Matthew Walker

Relaxing sensory toys

Fibre optics

The most widely accessible of all the sensory equipment. Consists of a light box and 100 two metre fibre optic strands. Features LED lights and plastic ‘sparkle’ effect strands with an automatic colour change cycle. Safe to
handle for children of all ages. Ideal for holding the child’s attention and good for those with sensory avoidance.

Mood egg

New in the library, this robust plastic egg is 42cm high and can be used indoors or outdoors. It is operated using a remote control. You can choose individual colours or a colour changing cycle. It comes with a recharging
station, each charge of 6 hours provides 8 hours of light

NB includes a flashing mode not suitable for those with photosensitive epilepsy.

Relaxation Sensory Kit

Contains all you need to create a calming environment. Includes weighted dolphin neck wrap, microwave heatable animal, aromatherapy diffuser with lavender oil, kid’s relaxation CDs, sand timer and other calming
tactile items.

Sensory in a Suitcase

Our most popular item. The suitcase contains a wealth of sensory equipment to relax and stimulate. Can be used for therapy, education and play activities. Contents include: fibre optic lights; UV torch and UV reactive items; Space Projector; aromatherapy diffuser and oils; mood pod projector with coloured lights;
natural sounds CDs and a variety of sound and tactile items. Most, but not all, also have a pin spot lamp and mirror ball.

To borrow any of these books or sensory toys contact Jan on [email protected] or 01267 244203.

How much have you learned about sleep?

Take our true or false quiz to find out.

Results

Well done! Why not share your result on social media and challenge your friends to do better?

Bad luck this time. Why not check out our new sleep tips booklet and then try again?

#1 We all wake up multiple times during the night

True. As part of our natural sleep cycles we all wake partially multiple times throughout the night but most of us fall straight back to sleep and have little memory of waking the next day.

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#2 A cup of a tea and some chocolate biscuits are a good bedtime snack

False. Both tea and chocolate contain caffeine, which can make it difficult to fall asleep.

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#3 Hide and seek is a great game to include in your child’s bedtime routine

False. You should include quiet, calming activities in your child’s bedtime routine. Things like colouring, play-doh or puzzles are good options.

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#4 You should avoid playing music at bedtime

False. If your child finds music relaxing it’s fine to play music at bedtime. We’d recommend that it’s either kept on – quietly – all night or your child knows how to turn it on themselves if they wake up in the night and need the music to get back to sleep.

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#5 A visual chart can help support a bedtime routine

True. Many children are visual learners so a picture schedule can help them process the information.

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#6 Using phones and tablets close to bedtime can disrupt your sleep

True. Phones and tablets (and TVs) give out blue light which prohibits our natural melatonin production. Melatonin is the hormone that makes us feel sleepy.

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#7 It’s best if you’re in the room when your child falls asleep

False. If your child falls asleep with you in the room they’ll find it harder to go back to sleep if they wake in the night and you’re not there. This is called a sleep association. Our new sleep tips booklet has more information on this and lots of other tips and techniques.

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#8 A teddy can be used as a substitute for a parent

True. A blanket, teddy or item of your clothing can be used as a comforting object to substitute you when your child is falling asleep or if they wake up in the night. There’s more information on this and other techniques in our new sleep tips booklet.

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#9 It’s okay to let your child into your bed if they wake up early on weekends as long as they stay in bed on weekdays

False. This is called intermittent reinforcement and it’s actually the most powerful type of reinforcement there is. Letting your child get into bed with you sometimes and not others can encourage your child to ‘try their luck’ most or every night. Consistency is key – whatever you feel is manageable.

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#10 Avoid bright light in the morning

False. Bright light exposure (using something like a SAD lamp or a daylight bulb) in the morning can set our 24 hour sleep/wake cycle, helping with problems settling at night and waking up in the morning.

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Summer reading

Summer reading

Are you looking for ways to entertain the children this summer? Did you know that you can borrow children’s books from our postal lending library? Check out some of the fab books we have available to borrow for free.

Age 5 – 8

The Five of Us by Quentin Blake

Angie, Ollie, Simon, Mario and Eric are five fantastic friends, each of whom has an unusual ability. Disaster strikes on a day out to the countryside but, working together and combining their individual powers the Fantastic Five save the day.

Avery by Marta Altes

Avery is like other birds most of the time, but sometimes, feels a bit different. But Avery is not alone.

Eagle Eyes by Jeanne Gehret

Like a river overflowing its banks, Ben wreaks havoc until he learns to recognise and control his ADHD. By the end of the book, Ben’s family wonders how they could have gotten along without his special way of seeing the world.

Age 8 -12

Of Mice and Aliens by Kathy Hoopman

When Ben and Andy discover an alien has crash landed in the backyard they’re faced with a problem. They want to help Zeke repair his ship, but why does he ask for such strange things? Can they trust him? This is a book of mystery and fun with Ben learning to cope with his newly diagnosed Asperger Syndrome and Zeke trying to cope with life on Earth, things are not always what they seem.

Monkey by Veronica Bennett

Harry Pritchard may be bullied at school and bored at home, but he’s not exactly thrilled when his mother volunteers him to visit a severely disabled patient of hers. She says it’ll do Harry good. But how can it end the bullying? Of get him a part in the drama club play? Or win the attentions of Louise Harding, the girl of his dreams? Well, Harry is in for some big surprises!

Stuck in Neutral by Terry Trueman

Shawn has severe cerebral palsy. No control over his muscles, no means of communication, no hope of improvement. Yet humour, joy and love sit alongside frustration in Shawn’s mind. His internal life is full of unseen pleasures, but his father perceives only the devastation of an uninhabited body. And Shawn suspects that as his father’s sorrow builds, so does his desire to act…

Age 13 plus

Haze by Kathy Hoopman

Seb is a loner. Brilliant with numbers but hopeless with people, he prefers the company of computers and his only friend Guzzle. Thing change for the better when he makes friends with Kristie, Madeline and Jen, and a new computer teacher, Miss Adonia arrives. However, Seb is soon caught up in a web of computer fraud and lies and turns to Madeline’s mysterious cyber friend for help.

Rules by Cynthia Lord

Twelve year old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “no toys in the fish tank”. But the summer Catherine meets Kristi, the potential next-door friend she’s always wished for, her own behaviour turns everything upside down and forces her to ask “what is normal?”

Trueman Bradley – Aspie Detective by Alexi Maxim Russell

Trueman leaves his hometown of Heartville, Illinois and arrives in New York City where he is soon told that a guy with AS could not possibly succeed as a detective. However, it’s not long before Trueman’s crime-fighting skills are put to the test when he is robbed on this first day in New York and he sets about using his exceptional mathematical abilities to invent a crime-fighting equation.

e-books with BorrowBox

  • ‘I am Not Joey Pigza’ and ‘The Key That Swallowed Joey Pigza’ by Jack Gantos
  • ‘The Curious Incident of the Dog in the Night-time’ by Mark Haddon

e-audiobooks with BorrowBox

  • ‘Rent a Bridesmaid’ and ‘Clover Moon’ by Jacqueline Wilson
  • ‘Who Killed Darius Drake’ and ‘Freak the Mighty’ by Rodman Philbrick
  • ‘Peter Rabbit’ by Beatrix Potter

If you would like to become a Cerebra Library member or a Cerebra BorrowBox member to borrow books, e-books or e-audiobooks for your child to read or listen to, please contact Jan the librarian at [email protected] for more information.

Handy tips for summer holiday sleep

tips for sleeping during the summer holidays

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

We hope these tips have helped but if you need more personal support our team would be happy to help. Visit our sleep pages for more information.

Our innovation team design the Boccia ramp of the future

Daniel Cuthbertson and Gerallt Devonald, Paralympic champion David Smith and Welsh champion Richard Bachelor with our new boccia rampThe CIC team have been working hard to create a high tech Boccia Ramp. Boccia is a ball sport, similar to bowls, for people with severe physical disabilities.

The guys were challenged by a young man in Bristol who wanted to have more independence in the game. They took up the challenge and have created a ramp that will enable almost anyone to play, no matter the severity of their condition! Almost any ability to move any part of your body will allow you to play Boccia with a lot more independence due to the unique electronics and controlling devices the team have made.

Boccia players in the BC3 category ordinarily require an assistant to place the ball on the ramp at the required height, aim the ramp left and right according their directions and then they can launch the ball into play using a head pointer. Well now, the assistant merely has to pop the ball on the ramp, and using the super high tech controlling devices, the player can raise and lower the ball, aim left and right and shoot the ball.

Whilst not being fully integrated with the rules and regulations just yet, the team are working with the amazing Paralympic Champion, World Champion, and joint most successful UK player ever, David Smith MBE, to perfect the design and technology to ensure that the Boccia ramp of the future is a smashing hit!

Here are the design team’s Daniel Cuthbertson and Gerallt Devonald with David Smith and Richard Bachelor (Welsh Champion) who kindly gave up some of their training session to help us.

Daniel Cuthbertson and Gerallt Devonald, Paralympic champion David Smith and Welsh champion Richard Bachelor with our new boccia ramp

Do you have a project for the team at CIC? If so, get in touch on [email protected] or 01792 783688.