Top Ten – The most popular children’s books in the library

Top 10 most popular children's books in our library

Find out which are the 10 most popular books for children in our postal lending library.

C0031 & C0092 Hands are not for Hitting by Martine Agassi

A board book suitable for young children

C0077 My Brother is Different by Louise Gorrod

A non-fiction book published by the National Autistic Society featuring illustrated characters, suitable for all age groups

C0093 & C0233 Can I Tell You About Asperger Syndrome? A guide for friends and family by Jude Welton

A non-fiction book featuring a child called Adam. An illustrated book suitable for 7 to 15 year olds

C0075 My Social Stories Book by Carol Gray

A non-fiction book with illustrated characters. Written for young children up to 6

C0149 A Book About What Autism Can Be Like by Sue Adams

A non-fiction book with illustrated characters, aimed at 8 to 12 year olds.

C0176 & C0245 The Red Beast: controlling anger in children with Asperger Syndrome by K I AL-Ghani

An illustrated story book written in conjunction with the National Autistic Society aimed at 7 to 11 year olds

C0065 Different Like Me: my book of autism heroes by Jennifer Elder

A non-fiction illustrated book featuring notable individuals with autism aimed at 8 to 12 year olds

C0253 All Cats Have Asperger Syndrome by Kathy Hoopman

A non-fiction book with photographs and captions aimed at all age groups

C0160 My Brother is Autistic by Jennifer Moore Mallinos

An illustrated story book suitable for small children

C0181 & C0219 What is it Like to be Me? A book about a boy with Asperger’s Syndrome by Alenka Klemenc

A non-fiction book with illustrated characters aimed at small children

You can find a full list of all the children’s books we have in the library on the library page of our website. You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

Welsh SEN ALN Reforms

The Welsh Government has been has been working on reforming the special educational needs system in Wales since the summer of 2007 and is now in the process of bringing in new legislation.

A Draft Additional Learning Needs and Education Tribunal Bill was published last December followed by a draft Code of Practice on February 14. The Bill itself is currently under consultation until March 3 but the Code of Practice will have its own consultation exercise later in the year.

Changes that are being proposed include:

  • Replacing the term ‘special educational needs’ with ‘additional learning needs’ (ALN) and ‘special educational provision’ with ‘additional learning provision’ (ALP) although the legal definitions behind the terms remains essentially unchanged;
  • Extending the age range from 0 – 25 to include further education colleges and specialist independent colleges (although not higher education or apprenticeships);
  • Replacing the three-tier school action/school action plus/statement system with a one tier system: any learner identified with ALN will receive a new statutory document called an Individual Development Plan (IDP) which also replaces Individual Education Plans (IEP);
  • IDPs will usually be written by schools. Only those learners with the most complex ALN will have an IDP maintained by their local authority meaning that the majority of learners with ALN will have to be assessed by their schools. If either a school or parent believes that a learner has needs requiring local authority intervention they can ask for the local authority’s support in assessing the learner’s ALN;
  • Special Educational Needs Co-ordinators (SENCos) will be known as Additional Learning Needs Co-ordinators (ALeNCOs);
  • As now, local authorities must have disagreement resolution services but will also have to “make arrangements for the provision” of independent advocacy services which will advise and assist with bringing an appeal to the Education Tribunal (which replaces the Special Educational Needs and Disability Tribunal for Wales).

Issues that have been raised so far include the lack of a national template for IDPs meaning that each school and local authority could, in theory, produce different looking IDPs; the capacity of schools and further education colleges to actually produce and maintain IDPs for all of their learners with ALN, and the costs involved. The government in England has spent over £600 million so far on its SEN reform programme which is running into difficulties. Although England has a much bigger population than Wales the financial implications of implementing the new proposals as intended could be significant.

All the relevant documents about the proposed legislation, including the draft Bill, the draft Code of Practice and the issues raised in a recent stakeholders’ event, can be found on the National Assembly for Wales website.

The National Assembly for Wales’ Research Unit has produced a useful overview of the ALN proposals with links to other useful information and details of how to get involved in the consultation on the draft Bill can be found here.

Collection Box Volunteers Needed

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Our collection boxes can be found on the counters of shops, cafes and businesses all over the country. It’s hard to believe but all that spare change really does add up.

On average our collection boxes raise an incredible £55,000 for us!  Lynn Palfreyman and Betty Blyth run a small shop on a campsite in Burton Constable in Yorkshire. They have had one of our collection boxes since 2000 and to date have collected an amazing £27,469 in spare change.

To develop our collection box scheme we are building a team of volunteers across the UK who can build contacts with local businesses in their areas and find new homes to place our boxes.

If you have some time to spare and would like to find out more, please get in touch with our Box Co-Ordinator Melanie Clark on 01267 242587 or melaniec@cerebra.org.uk.

Every penny we raise helps families with children with a brain condition to discover a better life together. It’s an incredibly rewarding journey for everyone involved – why not be a part of it?

Can’t find a riding helmet to fit your child?

We introduce the newest member of our Innovation Centre and would love to hear from you if your child would like to try horsey activities but you can’t find a helmet to fit.

New team member

Maria Kemys

Maria Kemeys

“Hi all, my name is Maria Kemeys. I am the newest member of the CIC team as their new Business Development Officer. I am a recent graduate with a Master’s in Business Administration and have a massive passion for working with a charity who contributes to changes that impact and better a child’s life. I am delighted to have been offered the position to work alongside the team in the Cerebra Innovation Centre where innovative and life changing work is being carried out every day to help children in unique situations. I am looking forward to working as part of the CIC to develop new and existing projects for families and children, helping to them to enjoy life together.

Can’t find a riding helmet to fit your child?

Tommy Lee wearing his helmet

Tommy Lee wearing his helmet

You may remember that in 2016 we were approached by a school on behalf of young man called Tommy Lee. Tommy Lee was unable to participate in their weekly horse riding sessions as the riding centre did not have a helmet that would fit Tommy Lee’s unique head shape.

Our Innovation Team worked hard to design and make a bespoke riding helmet that meant Tommy Lee could take part in riding lessons with his friends. The helmet was not only comfortable but safe and certified by the British Standard Institute (BSI).

Thanks to a donation from Mr and Mrs Coventry at Claire’s Project our team are now able to develop more of these equestrian helmets. So if your child loves horses and would love to try equestrian hobbies but can’t participate because of the standard helmet size,  then please get in touch to find out more.

You can contact the team on cic@cerebra.org.uk or call 01792 483688

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Barcelona Team Complete Half Marathon

IMG_8538Five members of Fetal i+D team at the University of Barcelona took on the challenge of running the Barcelona Half Marathon on Sunday February 12th.

The runners are all medical doctors and researchers from the team and work on a daily basis to diagnose and treat fetuses with neurodevelopmental risks. They all gladly offered to run as a way of getting more involved with their community and to support the families and children they usually see in their clinics, in a different way.

Rui V. Simões, PhD, one of the runners and a researcher in the group told us: “This was actually my first half marathon and the motivation could have not been better. I felt very proud to have run for Cerebra. We made it to the finish line and hope that the fundraising does too. Our children deserve it!”

Our thanks go to the whole team for joining us in our mission to help families with children with brain conditions discover a better life together.

You can keep up to date with all of our our website. If you would like to take part in an event that isn’t listed  you can also contact Cecilia Bufton, Events Coordinator on ceciliab@cerebra.org.uk or 01267 242586.

Happy 15th Birthday Cerebra!

Birthday brochureWe are celebrating our 15th birthday by publishing a special brochure celebrating some of our achievements and looking forward to an exciting future.

Since the charity was founded in December 2001 we have helped thousands of children with brain conditions and their families through research, information and direct, on-going support.

During the last eighteen months we have taken the opportunity of strengthening our mission, key purpose and identity by undergoing a re-branding exercise. As you’ve probably noticed, in 2016 we unveiled our fresh new look. Families remain at the heart of what we do – we listen to them, we use what they tell us to inspire the best research and innovation and then we help them put the knowledge into practice so that they can discover a better life together.

Our new logo and strapline embody our spirit of optimism and discovery – we are the charity that works wonders for children with brain conditions. Our positivity helps families see past every barrier; a spirit of relentless discovery drives everything we do and we recognise that our researchers, practitioners and families go further when they travel together.

In our birthday brochure we are taking the opportunity to celebrate not only some of the great work that we have done, but also the exciting things that are to come.

We are proud of how much we have grown in the last 15 years and we are excited about what the future holds. Thank you being with us so far. We hope that you will continue with us on our journey – you never know what we’ll discover together.

You can download our birthday brochure below:

Cerebra Birthday Brochure

Jonathan’s Story – Eye Can Talk

Jonathan’s perspex spelling board which helps him to communicate.

Jonathan Bryan tells us his remarkable story and how he’s doing all he can to make a difference for other children in his situation.

“At last I am able to tell my own story in my own words.  When I was born in 2006, my parents were told I had Cerebral Palsy and renal failure; the MRI scan of my brain was one of the worst the technician had seen.  My early years are a blur of hospital stays, sickness and prayer combined with strong love from my family; which carried me through those long days of pain and uncertainty.

Growing up in a small rural town enabled me to be part of the community, joining my peers at the local pre-school (despite being in a wheelchair with no speech).  Questions about my ability to participate in activities were never raised, fond memories of fun flood back.  Like all children, when I was 4 I started school, although I attended a special school.  At first I enjoyed my time, making new friends and having fun with my lovely teacher – who made lessons engaging, varied and entertaining.  Once a week, I attended my local primary school where I joined in with my able bodied peers for the afternoon.  That first academic year set a foundation of friendship, forming the basis for my self-esteem; and belief that I can meaningfully join in with peers, despite my physical disabilities.

Can you imagine being stuck in a reception class but without the teaching?  Aged 5, aged 6, aged 7…  Learning squeezed in to only one afternoon at my primary school, whilst the rest of my time my brain was slowly shutting down at special school. On top of this, the sensory curriculum I was subjected to became increasingly degrading – nursery rhymes, baby toys, and the icing on the cake – teachers talking to us like we are deaf toddlers.

On and on this ‘education’ continued, with mind numbing persistence, shutting off my reasoning thought and forcing me to retreat in on myself. Outwardly I looked vacantly stupid (giving credence to the idea that academically there was very little going on for me); inwardly I was amusing myself lost in my own thoughts.

When my peers were starting year 3, I was taken out of my special school for an hour a day to be taught, by my mother, to read, write and do basic maths. During the previous summer I had done some work on basic phonics at home using an eye gaze computer.  It was frustrating because the computer couldn’t read my eyes very well, but my mother and carers could – my access to learning was found!  Initially, the progress was slow, and during the third week of term having been taught two letters in the same way as the previous weeks, I was getting bored and beginning to switch off. Thankfully, the advice my mother was given, resulted in her making the lessons more challenging and I haven’t looked back since.

Weeks turned into months, and we moved through the early curriculum, and ended in the summer doing year one work. September brought a renewed pace – with my home education filling every morning, and by February I was using a spelling board for all my communication and writing. By year 5, two years after I started literacy and numeracy lessons, I had caught up with my peers and went on the roll of my local primary school.

Being able to communicate has totally transformed my life. This epiphanic moment has renewed my relationships, as I can hold conversations with family and friends, and brought new life to my free time! Reading and being read to bring me great pleasure, and it is with great excitement I look forward to meeting my favourite author, Michael Morpurgo. By far the most important and enjoyable part of my life, that I can now, share is my faith.  Finally, I can tell people about my time spent in Jesus’ garden when I was very unwell in hospital, and my excitement at returning to live with Jesus forever.

Before I leave, my purpose is to make a difference for children like me in education. To this end, I have started a campaign for non-verbal children to be taught literacy. Never judge a book by its cover, and never look at a child like me and assume we are not worth the teaching effort”.

You can read Jonathan’s blog here.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Sleep Practitioner Helps Nelli

Nelli and Iveta

Nelli and Iveta

Our Sleep Service gives support to families whose children are having problems with their sleep. Claire Varey, our Sleep Practitioner in the north of England, shares some advice that recently helped a family she worked with.

“I recently worked with Iveta, Lucie and Nelli to  address a sleep disturbance that was affecting the whole household. Nelli is 4 years old, she has Autism and doesn’t have verbal communication. Nelli is very active, ‘always on the go’ and getting her to settle at night time took hours. She was finally falling asleep between 12am and 2am.

Nelli’s mum, Iveta,  had difficulty waking Nelli up in the mornings to get her ready for school.  She was then falling asleep during the day which further compounded the issue. Iveta doesn’t speak much English so when she got in touch asking for help,  I arranged to have a telephone consultation with Iveta’s other daughter Lucie who could translate for her.

During our call I was able to provide information to help Iveta understand Nelli’s behaviours. I suggested ways to help her calm and reduce the stimulation in the evening, which would reduce the time it took Nelli to fall asleep. Between us, we worked out a programme that Iveta felt happy she could follow each night, therefore helping Nelli learn how to fall asleep well.

Nelli was having difficulty understanding when it was an appropriate time to sleep and so we discussed ways in which Nelli could use signals to help her brain start to calm in the evenings. Firstly, I encouraged Iveta to get Nelli outside in the afternoon’s as much as she could and to add that into her daily routine. Movement is important and an excellent way to help release tension from the day, but I informed Iveta that too much jumping and bouncing too close to bedtime, or doing these activities in the bedroom, would only keep Nelli’s brain active and reduce the chances of her falling asleep.  Also it appeared that Nelli may have associated her bedroom and bedtime as an extension of playtime rather than it being a calming and peaceful space where she should be sleeping.

We identified that bath time was quite stimulating for Nelli, so I suggested that she had her bath earlier to give enough time for her to calm down before bed.

I also suggested a later bedtime as Nelli was not showing any signs of being tired at the time she was put to bed. With this we looked at the hour leading up to bedtime, to introduce a calm activity for 15 minutes, such as massage, then offer some supper (certain foods promote sleep) and then up to the bedroom. I offered advice about using red light, dark room (blackout curtains/blinds very useful) and then to avoid too many toys or bouncing on the bed as these can distract and stimulate.

I arranged follow up telephone support, where we had could iron out a few issues, such as Nelli starting to wake and wanting to play on her tablet. I suggested using an object of comfort to replace the tablet, so that Nelli could make a positive association which was more appropriate than using the tablet.

I also suggested that they speak with school to reduce or stop Nelli’s afternoon nap, as this  could also be having a negative effect on her settling at an appropriate time in the evening.

Nelli is now settling between 9-10 pm, waking easier in the morning, her behaviour has improved through the day, her aggression has reduced and she goes to sleep much calmer too.

Iveta is happy with the information and support she received and knows she can get back in touch if she needs any future support. She would also like to thank Mrs Moore in Broadgreen Primary School who helped to put her in contact with Cerebra”.

We have a team of sleep practitioners who can offer help and advice on a wide range of sleep issues.

Learning disabilities: Identifying and managing mental health problems

The role of the National Institute for Health and Care Excellence (NICE) is to improve outcomes for people using the NHS and other public health and social care services.

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England. Treatment and care should be centred on the patient, taking into account their needs. Additionally patients should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals.

NICE guidance is written to reflect these priorities and focus on improving the care and treatment provided in the health service. They are prepared by groups of healthcare professionals, people who have personal experience or knowledge of the condition, patient representatives, and scientists, and offer evidence-based written information tailored to the needs of the child or young person and their parents or carers.

NICE have just published the Learning disabilities: identifying and managing mental health problems quality standard (QS142) on their website. This quality standard covers the prevention, assessment and management of mental health problems in people with learning disabilities in all settings (including health, social care, education, and forensic and criminal justice). It also covers family members, carers and care workers.  Quality standards describe best practice based on current evidence – what service providers should be aiming for.

In summary this guidance sets out 5 quality standards:

  1. Young people and adults with learning disabilities have an annual health check that includes a review of mental health problems.
  2. People with learning disabilities who need a mental health assessment are referred to a professional with expertise in mental health problems in people with learning disabilities.
  3. People with learning disabilities and a serious mental illness have a key worker to coordinate their care.
  4. People with learning and mental health problems who are receiving psychological interventions have them tailored to their preferences, level of understanding, and strengths and needs.
  5. People with learning disabilities who are taking antipsychotic drugs that are not reduced or stopped have annual documentation on reasons for continuing this prescription.