Books in the library covering special needs in general

library-booksThese books don’t quite fit into any of the specific categories based on diagnoses, so they are listed in the section of the library list called ‘Learning Disabilities and Special Needs in general’.
There are some pretty good books amongst them, which you might not come across when you are looking in for books in the other sections

  • L6198  When the Bough Breaks: a mother’s story by Julia Hollander
  • L6213  Special Educational Needs Inclusion and Diversity by Norah Frederickson
  • L6245  Children with Complex and Continuing Health Needs: experiences of children families and care staff by Jacqui Hewitt-Taylor
  • L6249  Is That My Child? Exploding myths of dyspraxia, dysplexia, tourette syndrome of childhood, ADD, ADHD and OCD by Robin Pauc
  • L6257  Mothering Special Needs: a different maternal journey by Anna Karin Kingston
  • L6276  Understanding Your Special Needs Grandchild by Clare Jones
  • L6278  A Practical Guide to Equal Opportunities by Hyacinth Malik
  • L6314  Building a Joyful Life with your Child who has special needs by Nancy Whiteman
  • L6372  Disabled Children Living Away From Home in Foster Care and Residential Settings by Claire Burns
  • L6488  If Only I’d Known That a Year Ago by RADAR
  • L6493  Letters to the Home Front: positive thoughts and ideas for parents bringing up children with developmental disabilities by John Clements
  • L6500  Chicken Soup for the Soul: children with special needs by Jack Canfield
  • L6535  Special Educational Needs: a parents’ guide by Antonia Chitty
  • L6536  Personalisation in Practice: supporting young people with disabilities through the transition to adulthood
  • L6537  Identifying Special Needs: a checklist for profiling individual differences
  • L6555  Different Dads: father’s stories of parenting disabled children

For more information on our library and to download a full library list please see our library pages.

Guides for Parents

We have published a series of guides for parents on a range of topics that aim to provide lots of useful information on how to get the help and support you need. We hope that our guides will help families understand and navigate the frameworks in place to ensure that children’s education, health and social care needs are met, as well as providing advice on practical matters such as family finances.

Some of our most popular resources, according to parents who responded to a recent online survey, include the guides on Education, Parent/Carers’ rights, Money Matters and Social Care.

Education

All children have the right to an education, but some children will need additional support to enable them to learn. Our Education guide summarises the support that might be available to your child both before s/he reaches school age and during his/her time at school. Topics include special educational needs, discrimination and school transport. We’ll shortly be publishing a new guide which explains the recent special educational needs reforms in England.

Parent / Carers’ rights

This guide explains the different sources of help available to parents in their role as carers. It explains your rights, for example, to ask for an assessment of your own needs and to have your views taken into account by the local authority when it is carrying out an assessment of your child’s needs.

Money Matters

Parents who want to know what financial help may be available to them and how to manage their children’s finances can refer to this guide for more information. It gives an overview of the main sources of financial help available for parents and for disabled young people aged 16 and over who may be entitled to help in their own right.

Social Care, Housing and Health

This guide gives information on the responsibilities of NHS bodies and local authorities to provide health and social care, as well as accommodation, for disabled children and their families.

View our full range of guides, briefings and infographics here.

We regularly review our guides to make sure they reflect the latest developments and we’re keen to hear your views about how we could improve on the layout and content to make sure our guides continue to be as relevant and useful as possible.

Do you have any views or comments about our guides? Are there any other topics that you would like us to include in our guides? If so, we’d be interested to hear from you. Please get in touch with us via the feedback forms available on our website for each guide or contact us at researchinfo@cerebra.org.uk

Towards a real impact on prenatal brain damage

Brain tractography

Brain tractography

We take a look at the pioneering work of the Cerebra Foetal Research Project at the University of Barcelona.

The human brain undergoes a long phase of development that starts in foetal life and ends much later in life. The most critical steps take place in the mother’s womb and during the first two years of life. Millions of neurons are being generated every day and start establishing connections, determining how our brain is going to work for the rest of our lives. This extremely complex process is governed by information contained in our genes, but also by the environment. Any disturbance may have a critical influence in the delicate sequence of events regulated in the genetic blueprint.

One in ten children has neurodevelopmental problems. It is estimated that about two thirds of these are of prenatal origin and in most instances, the problem occurred during foetal life, long before labour started. Severe forms of brain damage affect about 2/1000 of all new-borns and are expressed by serious complications including cerebral palsy and/or intellectual disability.

The vast majority of brain problems however, are manifested as subtle developmental disturbances. These cases are not associated with overt brain injury, but with brain reorganisation and are expressed mainly as alterations in cognition, thus affecting behaviour, social relations, neuromuscular regulation, learning and memory. The impact of these ‘milder’ neurological alterations in the quality of life cannot be overemphasized. Because they are of milder nature, they mostly go unnoticed in early months and even years of life.

Identification

Identification of foetal brain injury/reorganisation as early as possible is a major opportunity for public health. The problem involves thousands of families yearly. For the first two years of life, the growing brain has enough plasticity (the brain’s ability to respond and remodel itself) to bring back to normal deviations that occurred during intrauterine life. This has been defined as the ‘window of opportunity’ to revert the effects of in utero diseases on foetal programming.

Unfortunately, early diagnosis is still not possible in a substantial majority of cases. Much is still unknown about how a developing foetal brain adapts to and eventually deteriorates under adverse conditions. We need to improve the understanding and current diagnostic means of perinatal brain injury if we hope to start early interventions.

The list of foetal problems potentially leading to brain injury is large, but the majority of cases are caused by prematurity and intrauterine growth restriction (IUGR). Over the last 10 years the team in Barcelona has worked on both, but have focused more on IUGR as there was much less known about this disease and the opportunities for public health were greater.

Intrauterine Growth Restriction & Prematurity

IUGR is normally the consequence of placental insufficiency. The placenta is the organ that the foetus uses to obtain nutrients and oxygen from the mother. In a proportion of pregnancies, for a variety of reasons, the placenta does not grow properly and is not able to satisfy the enormous requirements of the foetus. In these circumstances, the ‘genetic program’ can not build the brain in the way it was supposed to, so that reprogramming, and consequently reorganization, must occur.

In prematurity, which is typically characterised by intrauterine infection, the baby is exposed to the ‘outer world’ when its brain is still in the critical construction phase. Changes in temperature, feeding, sound and light have, as of yet, unknown effects on the developing brain.

Cerebra Foetal Research Programme

The Cerebra Foetal Research Programme incorporates a variety of projects that aim to diagnose abnormal brain development in foetuses and new-borns, and implement specific interventions to prevent, or reduce its impact. The main interrelated research lines cover problems of maternal, foetal and neonatal health, and are summarised below.

Brain Connectivity

The main objective of this research line is to develop a quantitative imaging biomarker for early diagnosis of neurodevelopmental disorders based on the imaging of the brain connectivity (the way neurons connect the different brain areas). To accomplish that, different techniques of Magnetic Resonance Imaging (MRI) are being used, including diffusion, functional and anatomical MRI.

Neurological Programming (Microstructure and Metabolomics)

In this research line, the group focuses on identifying the structural (the way neurons and other cells are organised within the brain microscopically) and metabolic differences in the brain of foetuses and children that are diagnosed with growth restriction and are at risk of developing neurodevelopmental problems. This requires the development of new mathematical algorithms that will allow the interpretation of subtle brain changes that could be used as new biomarkers.

Diagnosis and Therapy in IUGR

This line of research aims to identify before birth, which babies with growth problems will have abnormal neurodevelopment. The majority of babies considered small in utero are naturally smaller and will face no future problems. However, a proportion of babies are born small due to problems with the placenta. These babies face neurobehavioral problems at birth that persist into childhood.

The Foetal Medicine Research Centre has developed non-invasive methods to measure how much blood reaches the brain, and have described that this is a strong marker of increased risk for neurodevelopmental problems. The prenatal identification of babies at risk is especially important because it would allow us to take preventive measures during pregnancy and early childhood.

Prematurity

The main objective of this line of research on prematurity is to advance our knowledge of the causes of preterm birth. Despite improvements in managing pregnancy, prematurity is still a common outcome and is the leading cause of perinatal morbidity and mortality. It is crucial to understand what triggers premature delivery so that we can prevent it and improve perinatal outcomes.

The Foetal Medicine Research Centre is trying to refine detection of patients at risk of preterm delivery as well as optimise the management and care of neonatal patients in the clinical level. The group hopes that the development of this research line will minimise needless intervention and over-treatment, streamline patient management and achieve the best possible results.

Impact

The main objective of the research centre is to reduce the number of instances of adverse neurodevelopment in children and adults and make a difference in their lives. An important contribution of the team to that extent is the implementation of their research findings into clinical practice through their involvement in the writing of clinical national and international guidelines.

The group is also committed to sharing and spreading their knowledge in maternal-foetal medicine with the general public. They have launched Inatal, the first social website directly related to a medical referral centre. Inatal is aimed to pregnant women with no pathologies but doubts and concerns, and provides objective, useful information about health issues while encouraging the active participation of its users.

In the Cerebra research programme 2008-2013, a multidisciplinary research programme for the evaluation of diagnostic techniques and intervention measures for prenatal brain damage using growth restriction as a model, the Foetal Medicine Research Centre has achieved significant advances in our understanding of brain injury of prenatal origin. They demonstrated that even milder forms of foetal growth restriction are associated with a high risk of neurological damage, improved current understanding and changed clinical management of one of the major cause of neurodevelopmental problems in children. However, as usual in research, discoveries have led to new questions, challenges and ideas for better ways to improve even further towards a real reduction in the number and magnitude of neurodevelopmental problems of foetal origin.

The next six years

Cerebra are delighted to be in a position to provide funding for the Foetal Medicine Research Centre at the University of Barcelona for a further 6 years (between 2014 and 2019) to continue the innovative and influential work in the area of perinatal brain damage.

Three Peaks Trekkers Set Off

The three peaks team set off

The three peaks team set off

Cerebra’s Three Peaks Trek team has set off.

The morning of Monday the 18th of August saw Cerebra’s Three Peaks Trek team begin their epic journey to scale Pen Y Fan, Cadair Idris and Snowdon.

The team, Bran Bucca, Ben Jones, Jamie Pitman, Lee Herbert and Helen Woolley, will be walking all the way to their first peak and covering the distance between each one on foot, clocking an enormous 175 miles by the 27th of August.

So far their campaign has raised over £35,000 for children with neurological conditions and they’ll be collecting on the way.

The group have strong motivations for undertaking the challenge. Jamie Pitman said “My sister has cerebral palsy and the work Cerebra does to support children and families is amazing”. All of the walkers are excited about the challenge: “It will be a real test of endurance and bring a great sense of achievement,” said team leader Bran Bucca.

You can support the walkers by visiting their JustGiving page or by getting in touch with Cerebra on 01267 244221. You can also follow their progress on Cerebra’s Facebook and Twitter pages, as well as our website.

Big Lottery Fund Boosts Cerebra’s Conference

The Big Lottery Fund has given a grant towards Cerebra’s 2014 annual conference.

Big Lottery Fund logo

Big Lottery Fund logo

Everyone at Cerebra would like to say a huge thank you to the Big Lottery Fund, who have provided a grant of £9,900 towards the charity’s annual conference.

This year’s conference, taking place at the Royal Society of Medicine in London on Tuesday the 7th of October, focuses on ‘Problem solving’: accessing decent services and support for children with complex needs and their families.

This is a one day conference providing academics, practitioners, educators and carers with up to date, evidence-based information on the commonly encountered barriers experienced by disabled children and their families in accessing their legal rights and practical approaches to breaking these barriers down.

You can find out more about this year’s conference, along with previous conferences, by clicking here.

Thanks to this grant we are able to offer a reduced rate for families and students, and extend our early bird offer to the 31st of August. To book your place click here.

The Big Lottery Fund gives out millions of pounds every year to good causes, including community groups and projects that improve health, education and the environment. You can find out more about the Big Lottery Fund on their website.

CIC reviews CAPR-Style clothes

bodyvestWe were recently made aware of a lovely company called CAPR-Style who make awesome fashionable clothes for kids and young adults.

Not only have their clothes been designed to fit appropriately, but they are really cool looking and functional too. Ross Lindsay very kindly sent us some trial outfits and the CIC team were really impressed with the build quality, the softness of the fabrics and how they had managed to get such functionality into such cool looking clothes.

Claudia Romero, the founder of CAPR-Style set up the company after finding it increasingly tough to find clothes for her own son. She says:

All our products are designed specifically for people with severe disabilities and also for wheelchair users and those with incontinence problems. The main users are those who have: limited range of motion and impaired dexterity, motor neuron disease, muscular dystrophy, spinal injury, cerebral palsy, multiple sclerosis, stroke, hemiplegia, rigidity, developmental disabilities, toileting/changing needs, G-tube feeding, catheters and colostomy bags and IV tubes. All the final adjustments to our products can be customize to personal needs (i.e. T-shirts with access to PEG tube or length of legs).”

As one small example from their extensive range, they supply the “Merrick Style Body Vest” with a super cool Little Monster Pattern. This is a one piece body vest with attached shorts which would be very versatile for playing or sleeping.

An opening at the crotch helps with dressing and helps secure any nappies or pads that are worn. To aid dressing the left shoulder or both shoulders of the body vest can be made to open and be secured with snap fasteners. The opening means the body vest can easily be placed over the head and then secured in place without having to thread arms into place. CAPR-Style even offer an additional service to include PEG-JEJ tube openings with covers.

Other clothing items offered are trousers with Velcro seams to aid dressing, long and short sleeve t-shirts and the range is constantly evolving. They cater for girls and boys from 3 years old into young adulthood. Excitingly they are planning to add skirts, jumpers and jacket to their range very soon. Keep in touch via CAPR-Style’s Facebook page for more information.

Based in Edinburgh, CAPR-Style are very proud that all of their clothing is produced in Scotland to a very high standard at very reasonable prices, with all their materials sourced from the UK.

For further information the contact details are: info@capr-style.com or 07804 512 186 and the website is: www.capr-style.com.

We would walk 500 miles….would you?

Can you help us reach 500 miles for children with neurological conditions?

The three peaks team set off

The three peaks team set off

We’re issuing a challenge to all of our supporters.

Every year people do all sorts of things to raise money for us and help us make a positive difference to the lives of children with neurological conditions. We’ve had people taking part in a gruelling mud run, a walk along Offa’s Dyke, cycle rides, 10k’s, talent competitions and multiple marathons.

Now we’d like to offer the opportunity for our ambitious supporters to really test themselves: Can you walk 500 miles for charity?

Don’t panic just yet! We’re not asking you to do it all by yourself.

With all the walks, runs, jumps and all sorts of other things people are doing for us, we’ve decided to set our supporters a goal of 500 miles. This means you can do whatever you like – over whatever distance you like – and it’ll be added to our 500 mile total.

So far we’re including a 10k run in London by both staff and supporters and an incredible Three Peaks Trek that will see some of our fundraisers not only walking the Welsh Three Peaks, but also the distance between each mountain, camping the whole way.

Altogether these two alone add up to 230 miles – which means we only have 270 miles left to reach our 500 goal!

So now it’s down to you. What do you fancy doing that can add to our total? Your own 10k challenge? Or maybe a marathon. Perhaps even a sky dive. You can walk, run, jump, swim, skip, cycle or anything else. Just let us know how far it is your going and how much you raise doing it and we’ll add your numbers.

Get in touch with our community fundraising team and let us know what you’re doing:

Allyson Silverthorne (allysons@cerebra.org.uk) on 01267 244 222

Sarah Jones (sarahj@cerebra.org.uk) 01267 244 222

Or let us know on Facebook.

Get your friends and family involved and we’ll include their mileage too – the more the merrier!

We’ll keep you updated through our news page, as well as Facebook and Twitter. Don’t be shy – like or subscribe and keep us up-to-date on your own progress. We love to hear from you and you could even end up with your own article.

By helping us reach 500 miles you’ll be raising vital funds for children with neurological conditions like cerebral palsy, autism, Down syndrome and ADHD, making a real difference to lives all over the UK.

In Memory of Barbara Price

Barbara with her grandson Zack

Barbara with her grandson Zack

Over £1000 was raised in the memory of a beloved grandmother.
Barbara Price passed away suddenly on the 5th of June 2014.

Barbara was the beloved grandmother of Zack, who is five years old. Zack was starved of oxygen at birth, resulting in significant brain damage that left him with cerebral palsy, epilepsy, impaired vision and difficulty eating.

Barbara’s daughter Linzi got in touch with Cerebra after friends and family raised £1060 in her mother’s memory, which was then donated to Cerebra. Linzi hoped that the money would go on to help other children like Zack.

“He absolutely adored his nanny Barbara,” Linzi told us. “Mainly because she spent most of her time cuddling him. They had a special relationship and she is dearly missed.”

Everyone at Cerebra sends their thanks and their sympathies to Linzi, her family and friends.

The charity is dedicated to helping children like Zack through direct, on-going support and by funding vital research into neurological conditions.

Darcy’s on the move!

Darcy riding her trike

Darcy riding her trike

A little girl will be having lots of fun this summer on her new trike, funded by Cerebra.

Darcy has a coloboma (a gap in the structure of the eye) that has left her partially blind. She also lives with painful spasms, epilepsy and developmental delay.

Her conditions make day to day life difficult but it doesn’t slow Darcy down and she enviously watched her sisters playing on their bikes.

Darcy’s mum couldn’t afford the specialist trike that Darcy needed, so applied to Cerebra for a grant to help with the cost. Her mum told us:

“The trike has given Darcy the chance to keep up with her sisters and she loves it. She’s like the queen waving at everyone as she passes! She has taken it to play group so she can join in when they do outside play then rides home on it. Thank you so much – it means the world to us that she can enjoy an activity safely without seizures and balance being an issue”.

The support given to Darcy and her family by Cerebra is all thanks to the money raised by the public. If you’d like to help us to keep making a positive difference, head over to our fundraising page.

Mud run for charity

Successful mud runners receive their medals

Muddy but happy!

On Sunday the 18th of May Caroline Davies Glanville and friends tackled the Pontargothi Mud Run to raise money for children’s charity Cerebra.

Caroline and her group faced a gruelling obstacle course in the May sunshine, jumping fences, navigating a course of tires, slogging knee-deep in swampy ponds, leaping gates and fences and trudging between trees.

The track saw Caroline and hundreds of other runners emerge muddy but accomplished at the end, ready to have their photos taken after proving themselves brave enough to battle the challenge.

The Pontargothi Mud Run is just one event organised by Back 2 the Trenches, who offer other courses throughout the UK. You can find out more on their website: www.back2thetrenches.co.uk.

You don’t have to submerge yourself in muddy waters to raise money for Cerebra – you can do anything to help us make a positive difference! Contact our Community Fundraising Team on 01267 244222.