Josh Nurse Becomes an Ambassador

Josh receiving his Ambassador certificate

Josh receiving his Ambassador certificate

Joshua Nurse from Pontiets, Carmarthenshire is celebrating his 16th birthday by becoming an Ambassador for us and drawing the winning tickets in our Summer raffle draw.

15 year old Joshua Nurse from Pontiets is the same age as Cerebra – and we have known and worked with him and his family since he was a baby.  Josh was born with a rare condition called Agenesis of the Corpus Callosum. It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having learning disabilities and autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – until they found Cerebra.

Josh has also been a great help to the charity when we’ve needed him – he has drawn winning raffle tickets presented cheques to lottery winners and posed for photos for charity publicity. He’s attended prestigious events at 10 Downing Street and the House of Lords and was delighted when we nominated him for a Child of Courage Award at the Journal Awards ceremony a couple of years ago – and he won! Josh is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh celebrates his sixteenth birthday in August and to mark the occasion we have asked him to become an Ambassador for Cerebra, On 31st July Josh drew the Summer Raffle and was officially welcomed as an Ambassador – as well as enjoying an early birthday celebration with charity staff!

Elaine Collins, PR & Marketing Manager for Cerebra said: “It’s been such a pleasure to have known Josh and his family all of these years and to have watched him grow up – he’s touched the hearts of everyone who has met him. He’s done so much to help raise awareness of our work and we’re delighted to make him an official Ambassador for us”.

You can find out more about Cerebra and their Ambassadors here.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

How behaviour problems can affect family life

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.

“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.

As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.

The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.

I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.

What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.

For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.

Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has a learning disability, not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and may ultimately lead to greater resources being available for families like ours.

Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or telephone: 02476 524 139.”

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Social Care Guides – England and Wales

social care guidesOne of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.

The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.

We have therefore developed two guides on social care, one for England and one for Wales which explain the different systems.

We would particularly recommend them to anyone moving between the two countries.

SEN Reforms in England and Wales

sen reformsIn England, the special educational needs (SEN) reforms introduced in September 2014 continue to be rolled out.

Although all SEN statements should be converted into Education, Health and Care (EHC) plans by April 2018 recent government figures show that 45% of the statements are still in place with only 19 out of the 152 English local authorities currently on track to meet the deadline.

Clearly, many families are still waiting for statements to be converted to an EHC plan and they can get more information about the process from our guide on Education in England: Statements of Special Educational Needs: A Guide for Parents.

However, those families undergoing assessment for an EHC plan, and those who already have one, will find the information they need in the recently revised guide Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents).

Meanwhile in Wales, the Welsh Government’s proposed SEN reforms, which it hopes will pass into law at the end of the year, continue with the Additional Learning Needs and Education Tribunal (Wales) Bill being scrutinised by the Welsh Assembly.

At the same time a consultation is being carried out on how the reforms should be introduced. For now, however, nothing has changed and the current system remains in place meaning that parents can continue to request an assessment for a SEN statement. Information on the Welsh system can be found in Education in Wales: A Guide for Parents.

Innovation Centre Test New Surf Boards

Our Innovation Centre has been doing some pioneering work with surfing equipment for disabled children over the past couple of years

They recently received funding from Claire’s Project which allowed them to produce two new surf boards, one of which was produced in time to be tested out at an event held by the Wave Project.

The board was used by about 10 children over the course of the weekend and even got used by a dad sitting in the seat holding his young daughter.

Ross Head from the Cerebra Innovation Centre said: “It went down a storm with everyone saying about how great it was. They are the happiest bunch of humans I have every come across!”

Some great photos of the day were taken by Checkered Photography.

You can find out more about CIC’s work here.

If you think they can help you with a problem, contact the team at cic@cerebra.org.uk.

Thanks for being Head Aware with us!

We’d like to say a huge thank you to everyone who joined in with our Head Awareness Week this year.

You really blew us away with all your commitment to wearing silly hats, wigs and whatever you could get your hands (or heads!) on!

A big thanks to Bolt Burdon Kemp, Centric Pontypool, Enable Law, The Hospital Saturday Fund, Irwin Mitchell Leeds, Novum Law, PenCru, Tomcat, Ruffer, Talking Mats and Wolferstans. They all fully embraced Head Awareness Week and got their staff to pose in an impressive array of head gear. You can see a selection of our favourite pictures below.

Thank you to everyone who took part and remember, if you would like to donate, you can still do so by texting HEAD20 and the amount you would like to give to 70070.

Alex Completes 60 Mile Trek

Alex and Ezra at Mwnt Beach

Alex and Ezra at Mwnt Beach

We would like to say a huge well done to Alex Elsaesser who recently walked through the night to complete a 60 mile trek along the Ceredigion Coastal path.

Alex said: “In the end it took us 29 hours walking to finish the 60 miles. Walking on the cliffs through the night was mental.  The group that organised the Walk pulled out a month before so we had to do it on our own. Fortunately we had beautiful weather and light winds. The scenery was beautiful but I would never suggest anyone do this all in one go. I never want to see another gate!”

Alex has completed many challenges for Cerebra previously including taking part in the London 10K for several years. He wanted to finish his run of fundraising with a bang and we think he has succeeded!

The 71 year old was joined on the walk by Jess Elsaesser and Ezra Mathias.

The group have so far raised an incredible £2,450 for Cerebra – far surpassing their initial £750 target. You can still support them through their Just Giving page.

Anne and Brian Make Fantastic Donation

Mrs Pearce hands her cheque over to Laura MacDonald

Mrs Pearce hands her cheque over to Laura MacDonald

The story of one little boy inspired Anne Pearce and her husband Brian to donate an incredible £5,000 to Cerebra!

Anne first heard about Cerebra from one of our Ambassadors, Nicola Tilson. Nicola has received support from our Sleep Practitioner Laura MacDonald for her son Alfie.

Nicola said: “Alfie had been diagnosed with a complicated medical condition. At that point, he had retired into his own world and we weren’t really sure how to bring him back.

When Laura came, it was a turning point for us. Since then, Alfie’s gone from strength to strength. It’s been progress after progress.”

Nicola has held several fundraising events for us, including several at Nationwide building society, where she works and that’s where Anne met Nicola and was touched by her family’s story.

Anne said: “I’ve been a customer for 20-odd years. I got to know Nicola and the fundraising they’ve done here. Nicola told me she wanted to fundraise for Cerebra for what they’ve done for her little boy.” When Nicola told Anne about her latest fundraising event, and she just simply had to be involved.

Nicola said: “Mrs Pearce, being Mrs Pearce, wanted to help. She came in to the bank a few days later with a cheque and we were absolutely blown away”.

Anne and Brian are both battling cancer themselves but still feel compelled to help in any way they can. As well as helping with donations, Anne has also knitted outfits which were used to clothe premature babies at St James’s Hospital in Leeds.

Thank you Anne and Brian!

Massage Helps Improve Bedtime Routine

Our Sleep Practitioner Pattie Everitt was recently able to help Freddie and his mum Abbie build a better bed time routine, improving the quality of family life for everyone.

Freddie had problems with night waking from around 9 months old.  He was not crying or upset but tended to talk to himself, shout and make loud noises. His mum, Abbie, got in contact with us when Freddie was 4 years old. He went to sleep fine each night, but was often awake for long periods during the night, sometimes up to 4-5 hours. Abbie would try to calm him down and get him back to sleep, but nothing seemed to work.

Pattie Everitt, one of our Sleep Practitioners, went to visit Abbie to discuss some new ideas she could try.  Although he was settling quite well, they talked about how making Freddie more relaxed before bed might help him sleep better at night.  This included introducing a wind down routine that was relaxing for him, and Abbie decided to try a back massage to help calm him down before bed.  They also discussed using weighted objects, such as heavy cuddly toys/ wheat sacks that might help Freddie feel more secure. Pattie also suggest a slightly later bedtime as he was going to bed quite early.

After some ongoing email support, Abbie managed to improve Freddie’s sleep quite a bit. The waking in the night reduced enough so that is was more manageable, with him not waking until around 4am (then going back off to sleep), so sleeping for a much longer block. He also enjoyed the back massage!

You can find out more about our Sleep Service on our website.