Poole High School has the X Factor

Chris Bennett handing Gareth Owens a cheque

Chris Bennett handing Gareth Owens a cheque

Poole High School have donated an incredible £600 to children’s charity Cerebra.

To raise the money the school held a duet competition at school where 16 teachers were paired with 16 students to battle it out in an X-Factor style competition.

A range of songs from Katy Perry, McFly and Frank Sinatra were sung to varying degrees of success from staff. The staff also made a music video for pupils to watch for ‘What Does the Fox Say’ and students could buy badges to support their favourite teacher in the run up to the event.

The school decided to support Cerebra through contact with local Cerebra Ambassador Chris Bennett. Chris and his wife Hannah are proud parents to Elliott who was born 8 weeks prematurely and diagnosed with Cerebral Palsy at 8 months old.

He is now 2 years old and a very happy, chatty little boy who can’t stop smiling! The family don’t know how much cerebral palsy will effect Elliott’s life and initially found it very hard to come to terms with Elliott’s diagnosis. Cerebra have supported the family as Elliott works so hard to make his own special journey in life.

Everyone at Cerebra is extremely grateful to the staff and students at Poole High School. The money they raised will help the charity to continue making a positive difference to the lives of thousands of children and their families.

Angelina Parker, a teacher at Poole High School, along with some of the pupils who took part in the duet competition  presented a cheque to Cerebra Ambassador Chris Bennett and the charity’s Regional Fundraiser Gareth Owens on Friday 20th June at the school.

JLA childhood neurodisability research priorities – Top 10 published!

The James Lind Alliance

The James Lind Alliance

The James Lind Alliance (JLA) research priority setting partnership publishes its top 10 research questions that still need to be answered on the effectiveness of interventions for childhood neurodisability.

The aim of the James Lind Alliance Childhood Disability Research Priority Setting Partnership was to identify and prioritise unanswered questions about the effectiveness of interventions for children and young people with neurodisability from patient, carer and clinical perspectives.

Suggestions were gathered in an open survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were unanswered. The topics were initially prioritised in a vote with stakeholders, and then discussed at a workshop by young people, parent carers and clinicians.

The final prioritisation workshop was held on 5 June 2014 at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England.

There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities (including Cerebra), a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon). Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The Steering Group will meet again in September to review progress with our dissemination strategy.

To find out more about the work and all the topics considered and prioritised, please visit:

http://www.bacdis.org.uk/research/psp.htm

New on-line Fragile X course for professionals

cornerstoneA new e-learning course aimed at raising awareness of the little-known condition Fragile X Syndrome among professionals has been launched within the UK.

The online tool has been developed by the Fragile X Society in conjunction with social care charity Cornerstone and is designed to help professionals to better support individuals and families affected by the condition.  The e-course was developed following the appointment just over a year ago of a Scottish Family Support Worker,Scotland’s first dedicated support worker for families affected by Fragile X Syndrome.

The appointment, based in Cornerstone’s Glasgow office, was made possible when the Scottish Government announced the award of £25,000 – more than £100,000 has now been allocated to the initiative.

Michael Matheson, Minister for Public Health, announced the funding as part of the Scottish Strategy for Autism: Autism Development Fund for 2012-13.

Fragile X Syndrome is the most common cause of inherited learning disability.  It can cause a wide range of learning, social, emotional and behavioural difficulties alongside problems with language and maintenance of attention.   Despite being the most common cause of inherited learning disability, Fragile X  is actually a rare condition and is not widely recognised, with just one in 4,000 males affected and one in 6,000 females affected.

The design of this new course has taken several months, and has been done very much in conjunction with Cornerstone’s Learning and Development team.

The aim is that it will become an invaluable tool for professionals working with people with learning difficulties, and it has three main objectives – to provide information about Fragile X Syndrome to the relevant professionals, to give them the ability to recognise its characteristics and to help identify ways to support individuals with the syndrome.

For further information or to purchase the course please contact Sandra Thoms, Family Support Worker, Scotland on 07825050072 or email at sandra@fragilex.org.uk

Difficulty Sleeping Alone or Night Waking

Our useful checklist gives tips for what you can do it your child is finding it difficult tbig-yawno sleep alone or waking up in the night.

If your child is waking in the night or finding it difficult to sleep by themselves, have you considered or are you already doing the following?

  • Does your child have a comforter?
  • Have a picture of you near by?
  • Are you being consistent every night?
  • Is your child falling asleep without milk/a dummy/ a tv on?
  • Is the environment staying the same (e.g. if a light is on when they fall asleep, does it stay on throughout the night?
  • Using a reward scheme
  • The gradual withdrawal technique (slowly moving away form your child over a period of time)
  • Being a Robotic parent once the light goes out and avoiding interaction
  • Leaving a night light on
  • Leaving the bedroom door open slightly
  • Talking to your child about their fears ( not just before bedtime)
  • Is everyone that is involved in the bedtime routine doing the same thing?
  • Is your child in pain?
  • Is your child waking due to noise?
  • Is your child waking due to it being cold?

 Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Positive stories about autism

Melanie Cosgrave and her childrenDo you have a positive story about someone you know with autism?

My name is Melanie Cosgrave and I am 43 years old.  I am married and have three children, two girls and a boy.  I used to be a primary school teacher and loved working with children.  When I had my children I decided to have a career break but have yet to go back.  I am lucky that I live in a nice quiet village in the North of England.

I have two children on the autistic spectrum, both at the opposite ends so I have had a very sharp learning curve to learn all I can about all aspects of autism.  My daughter is high functioning Aspergers and I am constantly amazed at her capacity for knowledge while totally struggling with the social side of life.  My son who will be ten this year ( I can’t believe it) is severly autistic, struggling to communicate and has very limited speech and attends a special school.

Over the years I have collected and read many books that have helped me and my family on our journey.  My first and one of my favourites being ‘Ten Things Every Child With Autism Wishes You Knew’ by Ellen Notbolm and also ‘The Autism Revolution’ by Martha Herbert.  There are so many books out there to give information and to help educate and for a while I have been thinking about the kind of book I would like to read but haven’t found.

Sometimes there are days that seem tough and that’s when I thought I would like to read a light hearted book filled with positive short stories about autistic people.  Something that is easy to pick up and you don’t have to be thinking too hard about.  A book that family and friends could buy to help someone they know who may just have had a diagnosis in the family, or that grandparents can pick up for a bit of reassurance.  So I thought that I would try and write that book.

So I would love to  hear from anyone who is on the autistic spectrum or has a family member or friend that you have a positive story about.  It can be a funny story or kind or happy, just something positive.  And it needs to be short.  If you could send your story to  autism.positive@btinternet.com that would be great.

Thanks very much.

Melanie Cosgrave

Books in the Library for Older Kids

Library booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability. We list some of the more popular books.

Last month we are featuring books for younger children and this month we are featuring books for older children.

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.

The full list of children’s books in our library can be found on our library pages.

Disability info for older children:

C0091  Ten Things Every Child With Autism Wishes You Knew
C0149  A Book About What Autism Can Be Like
C0141  Do You Understand Me? My life my thoughts my autism spectrum disorder
C0193  Explaining Autism
C0093  Can I Tell You About Asperger Syndrome
C0178  Inside Aspergers Looking Out
C0147  All Cats Have Aspergers
C0181  What is it Like to Be Me? A book about a boy with Aspergers
C0206  The Asperkids Secret Book of Social Rules
C0084  How to be Yourself in a World That’s Different: an Aspergers study guide to adolescence
L6291  Freaks Geeks and Asperger Syndrome
C0191  Sensory Smarts (sensory processing disorder)
L6050  Touch and Go Joe: an adolescent’s experience of OCD
C0061  Jumping Johnny Get Back to Work (ADHD)
C0117  The Girls Guide to ADHD
C0216  Can I Tell You About ADHD
C0137  All About Brain Tumours
C0174  Can I Tell You About Epilepsy
C0194  Explaining Epilepsy
C0190  Tic Talk (tourettes)
C0214  Can I Tell You About Tourette Syndrome
C0195  Explaining Down Syndrome
C0196  Explaining Cerebral Palsy
C0215  Can I Tell You About Dyspraxia
C0180  Living With Disability (all aspects of life with a disability)
Growing up:

C0153  Personal Hygiene: what’s that got to do with me? (boys and girls)
L6323  Taking Care of Myself: a hygiene and puberty personal curriculum for young people with autism (boys and girls)
L6483  The Boys Guide to Growing Up: choices and changes during puberty
C0218  Girl Talk: a survival guide to growing up
Fiction for older kids:

C0158  Trueman Bradley Aspie Detective
C0182  The Curious Incident of the Dog in the Nighttime
C0082  Blue Bottle Mystery (an aspie novel)
C0085  Of Mice and Aliens (an aspie novel)
C0192  Rules (having a brother with autism)
Books for siblings:

C0068  Being the Other One
C0107  The Sibling Slam Book
C0135  I’m a Teenager Get me Out of Here
C0217  Everybody is Different: a book for young people who have brothers or sisters with autism
C0179  My Family is Different: a workbook for children with a brother or sister who has autism or Asperger Syndrome

The Cerebra Centre for Neurodevelopmental Disorders

cerebra-centre-logoIn this article we outline the research being carried out at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.

Over the last 6 years (2008-2013), Cerebra has provided the core funding for The Cerebra Centre for Neurodevelopmental Disorders, a research centre based at the School of Psychology at the University of Birmingham, headed by Professor Chris Oliver.

The aims of the centre for the first six years of funding (2008-2013) were:

  • to carry out longitudinal, cross syndrome data collection to describe and understand the genetic, physical, neurological, cognitive and behavioural characteristics of children and young adults with genetic disorders associated with neurodevelopmental disorders
  • to conduct exploratory and hypothesis-driven experimental research projects that seek to discover the causes of and effective interventions for behavioural, cognitive and emotional problems in children and young adults with genetic disorders, intellectual disability and autism spectrum disorder
  • to disseminate research findings of relevance to all children and young adults with neurological impairments, intellectual and developmental disabilities who show behavioural, cognitive and emotional problems.
  • To read more about the current and past research projects, please visit the centre’s project pages, or read their annual report on the Cerebra website.  In this video a researcher at the centre explains the impact their research has for children with neurodevelopmental disorders and their families.

    The next 6 years

    Cerebra are delighted to be in a position to provide core funding for the Cerebra Centre for Neurodevelopmental Disorders for a further 6 years (2014-2019). The research taking place will continue to focus on understanding and ameliorating the clinically and socially significant problems that are experienced by children with neurodevelopmental disorders and their families. The centre will focus on three areas of research:

  • refining the behavioural phenotypes of genetic disorders
  • understanding the causes of clinically and socially significant problems experienced by children with neurodevelopmental disorders and their families
  • developing an early intervention strategy to prevent the development of these problems.
  • Understanding and reducing sleep disorders in children with developmental delay

    Cerebra have awarded additional funding to the centre to conduct research that will describe and assess sleep disorders in three groups of children at the highest risk for severe and persistent sleep problems:

  • children with Angelman syndrome
  • children with Smith-Magenis syndrome
  • children with intellectual disability and autism spectrum disorder.
  • The contrasting nature of the sleep disorders will allow the project to:

  • identify critical points for intervention that are disorder-sensitive
  • compare and contrast the effects of different types of sleep disorders on parental wellbeing and physical health
  • develop and trial disorder-sensitive sleep assessment protocols
  • evaluate the effects of behavioural management in proof of principle studies
  • develop cloud and internet resources to facilitate assessment, sleep consultancy, intervention and dissemination.
  • The study of sleep disorders in these three groups affords the opportunity to describe the relationship between different types of sleep disorders in children and their relationship to disturbed sleep, stress, poor physical health and coping in parents. These research findings will be invaluable to inform the Cerebra Sleep Service.

    Further Inform Neurogenetic Disorders (FIND) website development

    Cerebra also co-fund a website project with the Economic and Social Research Council (ESRC), led by the Cerebra Centre for Neurodevelopmental Disorders, that aims to get these research findings about rare genetic syndromes to families and professionals quickly and effectively. The website is named ‘Further Inform Neurogenetic Disorders (FIND)’, and will be launched in September 2014. Keep an eye out for the launch!

    For more information on FIND and the services provided please click on this link to be directed through to the website:  http://www.findresources.co.uk/about-us

    CIC News – June 2014

    We catch up with the guys at the CIC and find out what they’ve been up to lately.

    CIC have been busy designing and building products to help our young members and their families as usual! The requests for design challenges have been coming in steadily but there is always room for more! If there is anything we can help you with, please feel free to give us a call. Remember that we are here to help with anything product related, for example we could help source products, or if you have an idea for a solution that could help your child we should be able to design and make something…..and if you simply have a problem with no idea for a solution…those are the ones we love the best- give us a call or drop us a line and we will rise to the challenge!

    Here are a few recent examples of products that we have been working on.

    Weighted Capscic-cap
    CIC helped with a couple of recent requests for weighted caps to help with Tourettes and Autism. The families kindly supplied hats that had been tried for size and were the correct style and brand (very important consideration for our young members!) and CIC used their carefully developed method of making very slim flexible weighted pads to fit into the hats. From the outside you would never know there is any difference in the hat, but the resultant behavioural changes appear to be fantastic!

    “Hi Ross, just to let you know Jamie’s hats arrived yesterday. He is so happy with them. He wore his blue one in class today and he said it helps him concentrate. He is feeling a lot happier in himself. Thank you so much for taking the time to make them. Jamie will be sending you a card this week, thanks again D”

    An extra tall baby-gate
    This request was for a stylish gate that would enable Mum, Sinead, to know that her son is safe and well inside his room and so removing the risk of him getting to the stairs, whilst still being able to see each other through and decorated with Ben 10 images. As usual, the gate had to fit the style of the house and not have a negative impact on the environment or look too restrictive. We decided on a simple form with a curved top to break up the shape and then found some lovely images of Harvey’s favourite TV character.

    “Hello I received the gate and it is wonderful I cannot thank you enough also Harvey loves it with the ben10 stickers thank you very much for your time and effort. I have made a donation to cerebra thank you again x S”

    CIC writing clopeThe CIC Writing Slope
    Something that we have been working very hard on recently is the design of our new writing slope. You may remember that we told you about one that we had made for a young lady last year, and from the response to that story we have now made another 30 units! The writing slope is made so that it can help children with writing and reading by helping to hold the paper and books steady and in a useful position. It has many innovative features such as: Adjustable angle controlled with a gas spring, a pen holder which negates the use of pen lids, magnetic reading and writing ledges and a carry handle.

    Here is some of the feedback we have had so far:cic-writing-slope

    “Thank you so much for Jack’s writing table, it is brilliant. I will get a donation sent to you and also a photo!”

    “I am so very grateful for the beautifully crafted writing slope that arrived for Sim this morning! He is going to be incredibly excited when he gets home from school! Sim is 5 and a half and has Down’s Syndrome. He finds it very difficult to read books or try and draw/write when paper is placed directly on the table and we have been searching for a slope that enables him to do this, but have never managed to find one that hasn’t got a big lip, sits too close to the table, etc. The one you have made is absolutely fantastic and will be PERFECT! I love the attention to detail! The carry handle, the magnetic strips, the plastic tabs to keep books open, the pen slots, etc. Please do thank the team for all the hard work that has gone in to producing this for him. We really are immensely grateful.”

    If this is of interest to you, please give us a call on 01792 483688 to discuss your requirements!

    Tom’s Playring

    Tom and his playring

    Tom and his playring

    Tom’s mum sent us a great picture of the Playring thanks to Cerebra.

    The charity provided a Playring for Tom from the toy library, as well as helping them with a GoToSeat.

    As you can see in their pictures, Tom loves both. He has developmental delay, but the Playring and GoToSeat help him sit up and take part in his physio to aid his development.

    It also means he can join the family and enjoy shopping trips.

    “He loves being in the trolley,” his mum Laura told us. “We’re so grateful to the charity.”

    The GoToSeat was developed by Leckey and our Cerebra Innovation Centre. Take a look around our website to learn more.

    Don’t forget that Cerebra receives no government funding – all of this is thanks to your support!

    Cycle ride for Cerebra

    Group from Carmarthen Town AFC getting ready to start cycle rideA group of cyclists are setting off on a cycle ride to raise money for children with neurological conditions.

    The group, made up of Carmarthen Town AFC supporters and colleagues, are heading off for a 250 mile ride from North Wales to South Wales to raise money for Cerebra.

    The charity has been named the Carmarthen Town AFC’s charity of the year.

    Emlyn Schiavone, Phil Williams, Paul Evans, Ceri Rees, Ashley Williams, Moira Gorman and Anthony Parnell are riding in memory of Nigel Williams, former treasurer of Carmarthen Town AFC. The group holds two rides every year in his honour.

    You can sponsor Anthony, Paul or Ashley through JustGiving. Cerebra receives no government funding, so every penny raised through events like this really does make a positive difference!

    If you’d like to hold an event to raise money for us contact our community fundraising team by calling 01267 244 222.