Author Archives: Sarah Jones

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

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.

Research update – June 2014

UpdatepicA selection of recent news, research, reports and events.

In the news

Autism resolution passed at WHA Research

Autism reports that in an immediate board approval, the World Health Assembly (WHA) – the decision making body of the World Health Organisation (WHO) – passed recently a resolution regarding autism, placed by Bangladesh last year. The assembly urged member states to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health.

Autistic boys exposed to higher levels of hormones in womb, study finds

The Guardian reports that research on children in Denmark has found that boys with autism were more likely to have been exposed to higher levels of hormones in their mother’s wombs than those who developed normally. The findings add to a growing body of evidence that the biological foundations of autism are laid down well before birth and involve factors that go beyond the child’s genetic make-up. The results may help scientists to unravel some of the underlying causes of autism and explain why boys are four to five times more likely to be diagnosed with the condition, which affects around one percent of the population.

Research

Timing is everything: scientists control rapid re-wiring of brain circuits using patterned visual stimulation

In a recent study published in Science, scientists from Montreal Neurological Institute at McGill University and the McGill University Health Center show for the first time how the brain rewires and fine-tunes its connections differently depending on the relative timing of sensory stimuli. The researchers have been studying the formation of brain circuitry during development to better understand healthy brain wiring. They also hope such studies will lead to development of more effective treatments for nervous system injuries, as well as therapies for neurodevelopmental disorders such as autism and schizophrenia.

Twin study set to explore autism, attention deficit overlap

Sfari reports that a new Swedish twin study plans to search for the shared genetic and environmental origins of autism and attention deficit hyperactivity disorder (ADHD), which are often mistaken for each other. The new project aims to assess identical twin pairs using a variety of measures, including behavior and brain imaging. The researchers plan to compare the characteristics of the discordant twin pairs (meaning only one of the two has a disorder) with those of typically developing twin pairs.

Risk of brain injury is genetic

Researchers have identified a link between injury to the developing brain and common variation in genes associated with schizophrenia and the metabolism of fat. Scientists at the University of Edinburgh, Imperial College London and King’s College London studied genetic samples and MRI scans of more than 80 premature infants at the time of discharge from hospital. The study builds on previous research, and suggests that premature babies’ risk of brain injury is influenced by their genes, a study suggests. Researchers add that future studies could look at how changes in these genes may bring about this risk of – or resilience – to brain injury.

Clinical research: Angelman gene variants alter symptoms

Sfari provide a brief summary of a study published on 19 March in Research in Developmental Disabilities, which reports that the nature of the mutation that leads to Angelman syndrome, a disorder characterized by speech impairment and developmental delays, affects the disorder’s presentation.

Brain Methylation Map Published

The Scientist reports on research published on 4 July in Science that shows that epigenetic modification varies greatly over the course of development but is remarkably consistent between individuals and between mice and humans. Researchers at the Salk Institute in San Diego have made an extensive map of several types of methylation in the brains of mice and humans, hoping to understand the role of epigenetic changes in the brain as mental illnesses took hold in humans.

Reports

Sensory issues and autism: an insider’s guide

SEN provides a summary by Paul Isaacs that outlines some of the main sensory difficulties faced by people with autism and how they affect their everyday life.

Events

Towards a Positive Future

A one-day annual national conference for parents of children with special educational needs and the professionals who support them. Central London, Thursday 19th June 2014.

Engage in their future National Conference

An exceptional programme of speakers and workshops will be delivered around the theme of ‘Improving life chances for children experiencing behavioural, emotional and/or social difficulties (BESD)’. Wyboston Lakes, Cambridge, Thursday 3rd and Friday 4th July.

Royal Masonic Trust for Girls and Boys support Cerebra

father and sleeping babyThe Royal Masonic Trust for Girls and Boys has made an incredibly generous donation of £12,000 towards Cerebra’s Sleep Service through their Stepping Stones scheme.

Cerebra improves the lives of children and families living with a neurological condition through practical support and funding vital research.

One of our most needed services is our Sleep Service. Parents and carers of children with neurological conditions often have to deal with severely  disrupted sleep which can make an already challenging situation that much harder.

Cerebra’s sleep practitioners provide families with advice on a range of sleep issues in children such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety.

The generous grant from the Royal Masonic Trust for Girls and Boys will enable us to continue funding this much needed source of support and make a positive difference to thousands of families. We are extremely grateful for their support.

The Stepping Stones scheme is one way in which Freemasons in England and Wales support children in their communities who are most in need. You can find out more about the scheme here.

Actress Samira Mohamed Ali is our new ambassador

Samira Mohamed AliWe are delighted to announce actress Samira Mohamed Ali will be an Ambassador for Cerebra.

Samira is an award-winning International Actress and Brands Model who is currently working with many leading global companies. From a very young age, Samira started off as a model and led many high profile campaigns through her entrepreneurial skills. Not only was Samira known as a model, but she was also seen as a strong businesswoman, creating new marketing and innovative strategies for clients within the commercial world.

While she was still modeling, she worked part time for the world’s largest international bank (HSBC), becoming onequote-samira of the youngest bankers in the UK. At this point, aged just 21, Samira was given her first opportunity to test her presenting skills – interviewing top banking directors and financial executives for HSBC’s Internal Communications Department, a TV channel aired once a week to all HSBC branches across the UK and US.

Samira is currently the Ambassador for FilmInWales and works with the Welsh Government in attracting co-productions and inward investment to Wales from Bollywood and the US. Samira has recently signed as a lead role in a major movie in India and will also star as one of the lead roles for the ‘Dr Who’ movie – the Largest Fan Funded Movie ever in the US at the beginning of 2015. Her performance in Award Winning Molly Crows Movie received great reviews from film critics and the recent premiere gained support from Hollywood Actor Michael Sheen.

quote-chrisSamira has just returned from the US where she was this year’s UK Ambassador for BritWeek Miami and co-hosted the UKTI GALA Awards with Sean Yazbeck and presented the Award to CEO of Brightstar Corp. Marcelo Claure, partner in David Beckham’s new Miami League of Soccer.

The Neath born actress, said “This is a real privilege and honor to have been asked to be an ambassador for such a unique charity. I am very passionate about Cerebra as it does exceptional work with supporting children and their families and I hope it continues to grow year on year so that the service can be offered to more people across the UK”.

On 29th May Samira visited the charity’s headquarters in Carmarthen to meet staff and families who are currently being supported by the charity. Chris Jones, CEO of Cerebra said “Having Samira as our Ambassador will help us raise the awareness of the charity throughout the UK and internationally. It is very exciting to have Samira representing us and especially at our 2014 Awards ceremony in London for the children to be recognized and presented by such an inspirational figure that is also very supportive of us here in Carmarthen. We are very grateful to Samira for committing her time to us in between her busy filming schedule.”

Take a look at a video from the day and find out why our ambassadors are so important to us.

samira2

Family Fun from Circus Starr

CircusA wonderful time was had by families in Sheffield recently at one of our Cerebra day’s out.

Thanks to Circus Starr families in Sheffield had the chance to enjoy a fun-filled day out, including hilarious antics from everyone’s favourite clown, Nicolino, ever-more daring Chinese Pole and Aerial Strap performances from the fabulous Serik Brothers as well as spectacular knife balancing acts from the mesmerising Miss Lara.

Circus Starr is a touring circus troupe boasting world-class, professional artists from across the globe. It was first founded in 1987 to help raise much needed funds for local charities whilst providing free seats for thousands of disadvantaged, disabled or vulnerable children.

Cerebra regional support officer Lynne Bowker organised the event, giving families the opportunity to enjoy something special.

“Taylor and Alice look like they had a great time,” she told us. “Their dad also happened to be the Magicians Apprentice and was even more excited than they were!”

Thanks to your donations we’re able to organise events like this. Keep an eye out for future days out.

£1500 winner

Paul Slade and his dog DjangoAnother Cerebra supported has been counted in!

Another Cerebra supporter has won £1500 in our Count Me In Lottery!

Paul Slade, pictured with his dog Django, one the weekly prize by taking part in our lottery. Every week a new winner is crowned after donating just £1.20 a week.

The money raised through our lottery is vital to supporting children and young people with neurological conditions all over the UK.

Our lottery is the quickest and simplest way to show your support. Just click here to learn more and find out how to join.

Congratulations Paul!