Up Ben Nevis Trek

A group of friends trek up Ben Nevis to raise money for Cerebra

Ben Nevis nutters

L-R: Lindsay Whitehead, Michelle Whitehead, Norma Nicholson, Kelly Pahnke and Sadie Bews

Michelle Whitehead and a group of her friends recently completed a trek up Ben Nevis in order to raise money for Cerebra.

Michelle, along with her friends Norma Nicholson, Kelly Pahnke, Lindsay Whitehead and Sadie Bews managed to complete the trek up Britain’s highest mountain and in doing so, raised over £900 for Cerebra.

Michelle said: “We did it is because we thought we should put our girlie weekends to some good as we had done shopping and being a tourist so decided to set ourselves a challenge. My gosh was it a challenge! When you first set off you’re excited and full of dread then as you climb you feel like you can’t keep going but you do because seeing the summit is important. Plus all the people who have sponsored you; you can’t let them down or yourself. There were some laughs and some tears especially at the top but when you come back down you feel elated like you have achieved conquering the world. It was worth every pain and tear to know that not only did we do it but that we did it for a very worthy cause.”

They dubbed themselves the “Ben Nevis Nutters” but Cerebra are very grateful for their efforts!

Families Enjoy Bristol Ice Skating Session

KaiWe invited families to take part in an inclusive ice skating session in Bristol.

Families in Bristol recently enjoyed a day on the temporary ice at the At-Bristol Science Centre.

The special session allowed families who are members of the charity to have a free afternoon on the ice in a safe environment with some great equipment including “penguins” and “bananas” that were on hand to make sure there was no slipping, just plenty of sliding!

There was a special appearance of charity mascot Sir E. Bear who braved the ice himself to show everyone how it’s done!

Cerebra Regional Officer Kate Hedger who organised the event was very pleased with how much of a success the day was: “There were lots of smiling faces all around. I’m glad everyone enjoyed!” she said.

Cerebra hold many events throughout the year around the country. You can find out about upcoming events here.

Here are some of the pictures from the day:

Oliver Completes Swimathon

Oliver and Hector

Oliver and Hector

Eight year old Oliver completes a swimathon in aid of Cerebra.

Cerebra are fortunate to have a network of fantastic fundraisers who do their best to ensure that the charity is able to continue its work.

Some of our youngest fundraisers who have really excelled themselves are eight year old Oliver Faulkner and his six year old brother Hector.

Oliver suffers from mild Cerebral Palsy but he has never stopped him from doing work to raise awareness of the condition and to use this determination to fund raise for good causes.

Oliver and his family recently moved from Tunbridge Wells to Abu Dhabi which has been hard for him but this hasn’t dented Oliver’s determination to make new friends. He even prepared a presentation for his classmates so that they could learn about his condition and Cerebra, who have helped Oliver along the way.

Oliver has previously raised money for us by running 1km. We feel very privileged that he decided to do so again, this time with a swimathon.

Oliver’s mother Sema said: “Oliver had been quite tired the week of the challenge so at first he was nervous but he soon got motivated once he got into the water and swam a massive 22 lengths! He was famished when he got out, so we celebrated with some pizzas. I am very proud of Oliver!”

Oliver was joined by Hector who cheered his older brother on every step of the way.

Jessica Earns Child of Courage Award

Jessica at the Pride of Essex Awards

Jessica at the Pride of Essex Awards

Jessica Taylor is named Child of Courage at the Pride of Essex Awards.

We were very pleased to hear that Jessica Taylor has been honoured at the Pride of Essex Awards.

Jessica was given the Child of Courage Award at the ceremony which took place on 25th November.

Jessica’s is well known by Cerebra and our relationship with her began when mum Carolyn approached the Cerebra Innovation Centre (CIC) with a very important puzzle to solve! Jessica is reliant on an oxygen tank, having to carry one with her at all times which severely limited her independence and meant that she had to have an adult with her at all times to carry it.

The CIC adapted a trunki suitcase for Jessica to be able to carry her oxygen tank with her which has meant that Jessica can look forward to doing everything that other children enjoy.

As well as a trophy Jessica, received a cheque for £1,000 which will be used to buy her two pieces of much needed equipment that will help her development.

The family will also very kindly be donating to the CIC so that they can reach out to even more children like Jessica.

“Ross and the guys at the CIC do a superb job and I know Jess would have struggled to become as independent as she now is without their help so it’s great to be able to send a little back to help someone else along life’s road,” Carolyn said.

This isn’t the first time Jessica’s courage has been recognised with an award. She was recently given a Cerebra Children’s Award along with her sister Bethany who has been there for Jessica through everything. Their story can be found here.

Childhood Changes: A Way of Thinking

We suggest practical ways to help ease children through the transitions in their lives.
Cerebra is among the organisations providing information that helps to ease children through the transitions in their lives – to different kinds of education, lifestyle, levels and types of independence, and services that come and go at different ages.  We describe the processes involved, contacts, legal aspects and so on.

There is another aspect to this, though; what about the things that go through a child’s mind in the run-up to and during a transition, and how long does it take them to settle out of one situation and into another, especially with the element of a neurological disorder to contend with?  Some children with these disorders experience particular difficulties with any kind of change which ideally needs careful handling, as parents and carers soon learn.

What can be done?  Here are a few ideas, not by any means exhaustive.

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Childhood Changes: A Way of Thinking

We suggest practical ways to help ease children through the transitions in their lives.

Cerebra is among the organisations providing information that helps to ease children through the transitions in their lives – to different kinds of education, lifestyle, levels and types of independence, and services that come and go at different ages.  We describe the processes involved, contacts, legal aspects and so on.

There is another aspect to this, though; what about the things that go through a child’s mind in the run-up to and during a transition, and how long does it take them to settle out of one situation and into another, especially with the element of a neurological disorder to contend with?  Some children with these disorders experience particular difficulties with any kind of change which ideally needs careful handling, as parents and carers soon learn.

What can be done?  Here are a few ideas, not by any means exhaustive.

New environments, expectations, life states and routines are some of the things that involve adjustments of thinking.  So do expected changes that are delayed or do not happen after all.  This might be hidden, because it is not easy to know all of what a child is thinking and feeling.  Parents might also go through progressive thoughts and feelings as they begin to envisage the future themselves.

Preparing for changes

Change is partly about acquiring new habits. Could any of these, or elements of them be acquired in advance, and could the processes of acquiring them, and of dreaming and imagining the next phase, be made enjoyable?  Are there aspects to look forward to, and role models who have succeeded in making such a change? Prior experience, skills and understanding could help when the new situation arrives.

A major London-based research project about the transition from primary to secondary school lists factors that children thought would help other children, also factors that parents thought primary and secondary schools could do (Evangelou M., 2008).  There were a number of factors but the top ones were:  to be confident, not worry/be scared; to make more visits to the new school, go to induction/taster days etc; to be prepared/organized, and have right equipment; and to make and keep friends (children).  Also, that primary schools could prepare better for school work at Y7 and increase homework; and that secondary schools could arrange more induction, open or taster days and other visits (parents).

Another study conducted by the Foundation for Learning Disabilities resulted in three sets of tips to reduce the stresses specifically on children with special needs, with ideas that could help them feel confident and get a good start; one for children, one for parents and one for teachers, which can be downloaded from: http://www.learningdisabilities.org.uk/our-work/employment-education/moving-on-to-secondary-school.

The charity Young Minds publishes advice for schools to give support in situations of change, listing 27 common types of transition that children and young people go through.  Encouraging children to support other children is one of their suggestions as well. (Young Minds, 2014).

The website Mumsnet contains tips gleaned from parents, about preparing infants in general to start school for the first time (Mumsnet, 2014).  These include sharing the process with the child, addressing any concerns; familiarising them with places, activities and people; thinking about things they will be able to carry on with and new things they might enjoy; and reminding them of changes they have successfully made in the past.  Then, over the first few weeks, to be prepared for them to take time to adjust; to keep in with familiar routines and reassurances at home; for parents to get involved with the child’s new environment as well.

Other people can be good sources of ideas about assisting children in these areas, if asked, but if not asked they may only talk about the practical and strategic aspects of a change, such as going to see a new school beforehand, or equipment a child might need.  Nursery staff and teachers, particularly, draw on a lot of professional theory about how to prepare and equip children for changes in the educational context, and many nurseries and schools do prepare for changes /transitions.  Nurses and counsellors are among those who study how to help children through aspects of change that might be difficult for them.  Another advantage of questioning involved professionals on this could be that parents and professionals complement each other in their efforts.

One transition that our helpline is coming across, because some children are finding it difficult, is the move from nursery to primary school.  The referenced article from At Home Magazine (23 August 2011), gives some ideas on this, also on moving “between rooms” in a nursery.  Moving to nursery or a pre-school (and sometimes other changes as well) are also situations where it is valuable to understand the issue of separation from parents from a child’s point of view.  This is another subject that has a considerable literature connected with it, but one place to start would be an article by Dr Peter Cook about attachment and separation (Cook P., 1996-2014).

Building resilience

There are times when it is unavoidable for a child to have to transition quickly.  Of course, a sense of trust, comfort and security, with some continuity of the familiar should help.  For children who can manage it, also building skills and resilience in advance could come into its own.  What new skills, or currently underdeveloped skills, will they need?  What about parts of the new routine could they start to get used to or understand in advance?  Study skills and independence skills are among those that are useful in most situations.  Good interaction is often a key to adapting in new situations, and is something that many children with special needs have to work on.  If the child has a speech and language therapist, or another professional who helps children to interact, they may have suggestions.

There is much more material available now on study skills than there used to be.  They include:  how to take and finish breaks, self-care, eating, exercise and rest as well as ways of learning, memorising etc.

Independence skills and the nurturing of self-motivation are also among the resilience-builders that are taught to professional educators, but they are helpful at home as well.  Learning to set reasonable goals, moving towards them step-by-step, and receiving encouragement are  key factors.  It does not matter if progress is slow.  Children might need help to express and reset goals if there is any residue from negative experiences, for example, having been expelled from a school and preparing to go to another one.

Training materials for educators of young children include techniques for teaching them to be self-reliant in a group setting.  The “3-before-me” rule is one of the techniques, so an internet search for “3-before-me” will help to home in on these materials.  Some specialised methods, such as Montessori, pay particular attention to this subject.

The references below include resources on these subjects.

For situations that need more ideas

It is well-known that children with autistic features and severe learning disabilities have particular difficulties with change. Ideas from that field could help some other children also.   The National Autistic Society makes many suggestions, such as:  having a familiar environment with routine and structure; preparing early for the change; letting others know who are involved about the anxieties and difficulties; use visuals, social stories, comic strip conversations etc. to explain to the child; visit new places several times; make a book of photos and information; let them express themselves and work out what to do if they become anxious; keep helping after the change takes place; and other practical suggestions (National Autistic Society, 2013).

To feel comfortable with a change, a person needs to be able to believe in it.  This requires translation of information into meaning and purpose, easier for some than others.  If, for example, the child believes that the change is really to benefit someone else and not them, they may not feel like cooperating with it.  The “psychological contract” is a concept used to work with processes like this in the business world, where two parties mutually accept and expect responsibilities and promises (more details:  Chartered Institute of Personnel and Development 2014).

The fairly recent concept of “nudge theory” comes from the socio-political world.  This is a way of indirectly encouraging an attitude, decision or behaviour by gently persuading, such that the subject possibly part-knows that they are being persuaded but finds that easier to accept.  It might assist parents and others to ease transitions for children, as well as providing an understanding about how we and they are ourselves being “nudged” by various societal forces and advertising.  Many of its concepts are just a codification of things that parents would naturally do, but it could provide tools for those who see that their children need ways of making a transition easier.   An example of a “nudge” might be, instead of giving an instruction to a child to tidy up, playing a tidying game that the child takes part in (Chapman A., 2013-14).  Among the long list of nudging concepts that could be applied to situations of change is that of “loss aversion”, referring to things a child does not want to lose about a current situation, e.g. they may not want to go to another school because some of their friends will be going to a different one.  Possible approaches to “loss aversion” include focusing on what they will gain from the new situation, and clarifying the realities of the change rather than the perhaps exaggerated worries associated with it.  Another concept is “priming”, which would mean helping the child to visualise positive actions and outcomes, including any steps they can themselves take towards the change.  One note of caution about “nudging”, though, is that it could easily trespass across a line into unethical manipulation.  The article referenced (Chapman A., 2013-14) contains a lot more detail.


CIC is back up and running!

CIC full 2 main

As you may be aware we have moved offices – in fact, we moved building, workshop, office and all of our kit. It took forever! We had enjoyed a top floor office in University of Wales TSD Swansea for the last 9 years, with a panoramic sea view and lots of space. But in line with the plans to re-house the School of Industrial Design in a newly renovated building in the city centre, we upped sticks and joined them.

Our new home is in part of the Old Swansea Central Library which has been renovated and sports a fantastic new glass atrium on the west elevation. You may have seen the building in one Dr Who episode where they filmed in the round reading room. The building looks fantastic now, and we have brand new state of the art machines in the workshops and a lovely new office (no sea view unfortunately).

CIC full main

That said, it took a while to move in! As with all building projects there were many unforeseen obstacles which led to delays. We packed up our things into boxes and crates, according to the schedule, in June but we were not able to move in until August in the end and the workshop was not commissioned until early November! So after a few homeless months and with no workshop we did get delayed in some of our work, and we have been fighting hard to pull back some of our deadlines. Thank you all so much for being patient with us!

The good news is that our phone works again!! Yes- you heard it, 3 months off thegrid, but we are connected again! Please call us on 01792 483688 if you have any requests for products or help that we might be able to offer.

We have many new products getting close to finishing; including fish tank enclosures to make fish tanks accessible to children, “Oxygem” our oxygen cylinder trolleys and the 20 writing slopes are close to completion- we had to order the parts from China to get these finished!

Christmas Drawing Competition

Get involved with our fabulous festive drawing competition and your child could win some of our fantastic toys.

Do you know any budding young artists? Then our exciting new competition could be right up your street!

We are asking to see your child’s best Christmas picture to get us ready for the festive season! The picture can be of anything you want so long as it is Christmas related so get your creative hats on and help us to get into the Christmas spirit!

The owners of the best pictures will win something from a fabulous selection of boy’s and girl’s toys that have very kindly been donated to us by The Fence Club.

Children of all ages are welcome to enter and there are prizes to suit all ages.

To enter, please provide us with your child’s name, age and your address along with their artwork which can either be emailed with the subject “Christmas Drawing Competition” to info@cerebra.org.uk or posted to:

Christmas Drawing Competition
c/o Parent Support
Second Floor Offices
The Lyric Building
King Street
SA31 1BD

Get your entries in quick! The closing date is 10th December so that we can send prizes out in time for Christmas!

We’ll include a selection of them in a future News e-mail.

Good luck!

Sleep seminar

father and sleeping baby
On 13th November Cerebra held a seminar at the Thistle Hotel in Birmingham on ‘Sleep in children with developmental difficulties’. The event was held in conjunction with the Cerebra Centre for Neurodevelopment Disorders at the University of Birmingham.

The purpose of the seminar was to disseminate the findings of recent sleep research including the use of both behavioural and medical interventions and to describe the practical implications for parents and professionals.

Key speakers included:

  • Dr Andy Badshaw (University of Birmingham)- An introduction to sleep
  • Prof Paul Gingras (Guys and St Thomas) – Sleep in children with neurodevelopmental disorders
  • Lisa Fishwick (Parent) – The impact of having a child with sleep disturbances
  • Moira Draper (Cerebra) – Cerebra sleep services
  • Dr Luci Wiggs, (Oxford Brookes University)- Non-pharmacological approaches to sleep problems in children with neurodevelopmental disorders
  • Sleep research at the Cerebra Centre for Neurodevelopmental Disorders.

We had a very good turnout, with 74 delegates attending on the day. The presentations were excellent and stimulated much dynamic discussion amongst the group. Delegates said the day provided ‘good variation of topics and good signposting to relevant services; definitely felt more empowered to deal with sleep issues’ and stressed how important it was to have a parents view of sleep problems and their approach to a solution.

Next time delegates would like a dedicated seminar addressing sensory processing, challenging behaviour and mental health in children with developmental disabilities and more parent stories, talking about what worked for them.

Cerebra Thank the West Wales Motorcycle Trust

Allyson Silverthorne picking up the cheque.

Allyson Silverthorne picking up the cheque.

We thank the West Wales Motorcycle Trust for their donation at a recent presentation.

Cerebra are exceptionally grateful to the West Wales Motorcycling Trust who donated £2,000 at a recent presentation.

Every year, members from the Trust organise the West Wales Motorcycle Show which brings together motorcycle enthusiasts from across South Wales.

Profits from the show are then distributed between the Trust’s elected charities for that year.

Cerebra’s Community Fundraising Officer Allyson Silverthorne attended the presentation to receive the cheque from show organisers including those pictured: Ian Close, Allan Davies and Maureen Rapley, and expressed her gratitude for the huge donation.

“I was delighted when I realised how much Cerebra would be receiving this year. We have had donations from the West Wales Motorcycling Trust before, for which we are very grateful but this exceeded all of our expectations!”

Allyson helped to run the “Kid’s Corner” at this year’s Motorcycle Show as well as selling raffle tickets for the organisers, who expressed their gratitude for her help.