Support for our Problem-Solving Toolkit Workshops

We are very grateful to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation who have each awarded us a £5,000 grant to fund our Problem Solving Toolkit Workshops.

Their generous support means that we can help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.

Our Problem Solving Toolkit and Workshops are designed to help families access the services that their children need, and are entitled to. The Toolkit is a comprehensive, practical and easy to use guide, packed with useful advice, solutions and precedent letters. You can download the Toolkit here.

Problem Solving Toolkit Workshops

This year we have launched our Problem Solving Toolkit Workshops which use the information and resources in the Toolkit to give parents, carers and professionals the skills and knowledge they need to advocate for themselves. Each workshop lasts for 3-4 hours and includes a presentation, case studies for group work and a chance to discuss and share experiences. The workshops are free.

We’ve had some great feedback from parents and professionals who attended our initial workshop:

  • “A wonderful guide to help parents, thank you so much. It is a real maze and you have provided a crutch for parents to use”. (A parent)
  • “I will be recommending this resource to the families that I work with. It is wonderful”.  (A professional)

Thanks again to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation for their generous support.

Books in the library on growing up

books on growing upCheck out the books we have in our postal lending library on growing up.

Going through adolescence

  • How to be yourself in a world that’s different by Yuko Yoshida – C0148 & C0048
  • Freaks Geeks and Asperger Syndrome by Luke Jackson – L6291
  • Exploring Friendships Puberty and Relationships: a programme to help children and young people on the Autism Spectrum to cope with the challenges of adolescence by Kate Ripley – L6602
  • Parenting a Teen or Young Adult with Asperger Syndrome: 325 ideas insights tips and strategies by Brenda Boyd – L6650
  • Social Skills Training for Adolescents with General Moderate Learning Difficulties by Ursula Cornish – L1720
  • Adolescents on the Autism Spectrum by Chantal Sicile-Kira – L6133
  • Asperger Syndrome Adolescence and Identity: looking beyond the label by Harvey Molloy – L1614

Going through puberty

  • Taking Care of Myself: a hygiene puberty and personal curriculum for young people with Autism by Mary Wrobel – L6323 (this book covers both boys and girls)
  • How It Is: an image vocabulary for children about feelings, rights and safety, personal care and sexuality by the NSPCC – L5986
  • The Boys Guide to Growing Up: choices and changes during puberty by Terri Couwenhoven – L6483
  • What’s Happening to Ellie? A book about puberty for girls and young women with autism and related conditions by Kate Reynolds – C0248
  • Girl Talk: a survival guide to growing up by Caroline Plaisted – C0218
  • Teaching Children with Down Syndrome about their Bodies, Boundaries and Sexuality by Terri Couwenhoven – L6262
  • Sexuality and Severe Autism: a practical guide for parents caregivers and health educators by Kate Reynolds – L6505
  • Aspergers Syndrome and Sexuality: from adolescence through adulthood by Isabelle Henault – L6650

Transition to adult services

  • Personalisation in Practice: supporting young people with disabilities through the transition to adulthood by Suzie Franklin – L6536
  • Achieving Successful Transitions for Young People with Disabilities: a practical guide by Jill Hughes – L6655

To borrow books from the library please email the librarian Jan Pugh on janetp@cerebra.org.uk.

Why should I take part in research about families of children with learning disabilities?

University of Warwick logoThe CEDAR research centre at Warwick University needs 1000 children with learning disabilities and their families to help with a research project.

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour, considers how research can help families like hers:

If someone had asked me to help with a research project when my son James was little, I would probably have asked them to go away. I was usually very tired and grumpy, because James didn’t sleep through the night. He is autistic and has learning disabilities. He often woke in the early hours and because he needs one-to-one supervision, I had to be awake too. My joints ached from moving and handling him, as he is a wheelchair user and doubly incontinent. All of his care needs were carried out by me or his Dad and despite the hoists in our house, this physical care was time consuming and heavy work.

James is now 17 and goes to a specialist boarding school, so I get a reasonable night’s sleep. If someone asked me to help with a research project today, I would be much more co-operative. But rest is not the only thing which has changed my approach. I have come to appreciate just how powerful evidence can be in influencing government policy and how it can result in more investment for disabled children.

When James was 5, family life was very difficult. He was frightened of leaving the security of the house and had a phobia about getting in the car. As a result, his brother and sister ended up trapped at home a lot of the time. I was deeply worried about them. What we really needed was someone to look after James to give us a break, so we could go out to the cinema, or for a pizza. Eventually we were referred to the social care department of our local authority, as a priority for support. Despite this, the council refused to fund any respite care and so began a long battle.

Six years later, for the first time local authorities were placed under a specific legal duty to provide short breaks for carers of disabled children. I didn’t know then that the law had changed. But looking back, I realise that we had stopped hitting a brick wall in our efforts to get respite and had started pushing at an open door.

The origins of the new law lay in campaigning by disability charities such as Mencap which led to parliamentary hearings, where parents, government ministers and other officials gave evidence. This was later followed by research commissioned by the Every Disabled Child Matters Campaign (EDCM) and the Department for Education (DfE). The research project “Aiming High” took place in two stages, starting in 2009 and ending in 2011. In this way, the families which were involved could be followed over time. The results showed that it was cheaper to provide short breaks to families who needed it, before they became so exhausted that they were incapable of looking after their children at all.

Now, headed by Professor Richard Hastings, The Cerebra Family Research Group based at CEDAR, a research centre at The University of Warwick and the research charity Cerebra, needs 1000 families of children with a learning disability to volunteer for another study over time. They want to look at the wellbeing of families who have children with 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 will help to shape future support for families and children.

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 call 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.

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

Research and Information Request Service

In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.

So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.

Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.

Parent Guide

As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.

Parent Research Requests

If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with georgiam@cerebra.org.uk for more information on this service.

Your requests help others

Whatever information you are looking for, the chances are that it will also be useful to other families.  We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.

We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.

If you would like more information about our new Research and Information Request Service, please get in touch with georgiam@cerebra.org.uk

Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.

Cameron Gets Around on His New Scooot Seat

Louise French recently got in touch with us after she saw a Scooot Seat in action and knew it would be beneficial for her son Cameron. She told us their story.

Cameron was my third baby. He was born a healthy little boy, brother to Harris and Alfie, he made my family complete.  At 5 weeks old he became ill and was admitted to hospital where unfortunately he suffered a cardiac arrest which resulted in lack of oxygen to his brain and this resulted in an acquired brain injury. He spent the next 6 months in hospital.

The brain injury has meant that Cameron can’t safely swallow so he has had numerous operations and is now fed through a peg in his tummy.  He cannot communicate and is unable to sit up unaided and cannot walk.  It has been a long and hard 3 years looking after Cameron and coming to terms with his disabilities.  Cameron has very challenging behaviours which we believe are mainly due to frustration.

Cameron gets very frustrated as any 3 year old. He wants to run about and play with his brothers and other children but due to his disabilities he cannot. We had no means of Cameron moving about the room to follow his brothers and to get from room to room.  When playing outside Cameron just had to sit in his wheelchair and watch the boys.

Christmas 2015 we went to our Portage Christmas party were we saw a little boy on a Scooot Seat and we thought that maybe that if we could maybe get one of these Cameron would be able to join in with others while building his posture and potentially helping him to sit independently. Our Portage worker went out of her way to get us one to borrow to see how Cameron went on. Unfortunately there was so much demand for the equipment we were only able to borrow for a couple of weeks which wasn’t long enough for Cameron to get used to it.  We therefore put an application to Cerebra for a grant to purchase a Scooot. We waited patiently and we eventually got a letter to say our grant was successful and the Scooot was on order!

The Scooot got delivered about a month ago and to say it has opened up so many opportunities for Cameron is an understatement!  He is now following us round the room and joining in with his brothers when playing.  He has even started to sit unaided since using the scoot which is a real achievement for Cameron.  Today we took the Scooot outside in the garden and we played football, Cameron was so excited it was absolutely brilliant.

All I can say to Cerebra is thank you because you have allowed Cameron the ability to join in with so many things and without your assistance we may never have got the Scooot.

Thank you Cerebra.

The Scooot Seat was originally designed by the team at the Cerebra Innovation Centre (CIC) and is now manufactured by Leckey.
Julie sent us this lovely video of Cameron enjoying his new Scooot Seat.

Holly’s Rocking Dinosaur!

Holly and her rocking dinosaur

Holly and her rocking dinosaur

Liz and Jim are parents to 15 month old Holly and they recently contacted the Cerebra Innovation Centre (CIC) with a challenge to complete in time for their daughter’s first birthday. They told us their story:

“We contacted the Cerebra Innovation Centre (CIC) after realising the first birthday present we had bought for our daughter, when she was just a month old, was completely inappropriate. Holly loves rocking and we really wanted to get her a rocking animal for her first birthday and we found a dinosaur. The problem was that it was unlikely Holly would ever be able to use it as it had no harness or support.

Holly has a rare chromosome disorder. She has duplications on 2q24.2 and 2q24.3. This manifests as Holly having hypotonia, global developmental delay, visual impairment, Sandifer Syndrome and food allergies. She is at a high risk of developing autism and epilepsy but we are lucky that she seems to be ok at the moment. As Holly has hypotonia her core is very weak and so she struggles to sit unsupported.

Holly is a really happy, wonderful little person and we wanted her to be able to enjoy her rocking dinosaur. We approached Ross and the team at the CIC to see if it would be possible to convert her toy so she can enjoy it safely, as it is one of the few toys she has that is just for her to have fun and enjoy being a little girl. They rose to the challenge beautifully and added pieces to it so that we could attach the Firefly GoTo seat, which would keep her safe.

Holly loves her dinosaur, she can make it rock by herself and she is independent.  We are so grateful to Cerebra for making this possible for Holly. It even arrived back in time for her first birthday!”

If you have an idea for a piece of equipment that you would like the CIC team to build, you can get in touch with them at cic@cerebra.org.uk or 01792 483688.

 

Carmarthen Florist Creates Cerebra Bouquet

Carmarthen based florist, FloralDecor by Sienna, has come up with a marvellous way to raise funds for Cerebra – she has created a beautiful Cerebra bouquet!

There are three different bouquets available, the Classic, Signature and Luxury Bouquets which are £30, £40 and £50 respectively.

10% from the sale of each of these bouquets comes directly to Cerebra and each is exquisitely gift wrapped and presented in a gift bag.

Please note that due to the seasonal availability of flowers it may be necessary to vary individual stems from those shown. The skilled florists may substitute  flowers for one similar in style quality and value.

We think the bouquets look stunning but don’t take our word for it, take a look!

You can contact Sienna on 01267 220726 or info@floraldecorbysienna.co.uk.

Cardiff Quiz Evening a Success

Les Quizerables accept their prize

Les Quizerables accept their prize

On 28th February we held our first quiz evening at the Village Hotel in Cardiff.

Teams competed for the title of “Cardiff’s Smartest”, answering questions on topics from sport to food and drink. There was even a taste testing round where teams had to guess the branded product.

Cerebra Ambassador Sian Taylor attended the evening to share how Cerebra has helped her family since the birth of her son Ollie, who has the rare condition Wolf Hirschorn Syndrome.

In addition to the quiz, we also held a hugely successful raffle.

The winning team, who went by the name Les Quizerables even kindly donated their £300 prize back to Cerebra.

The event raised nearly £800 in total and everyone at Cerebra would like to say a massive thank you to everyone who made the event a success.

Isaac’s Story – A Little Houdini!

Claire, Isaac and the whole family

Claire, Isaac and the whole family

Claire is mum to eight year-old Isaac. Here’s her story:
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“Isaac is 8 years old and the light of our lives. His big brother Josh and big sister Miriam adore him. He’s non verbal, double incontinent, and doesn’t really have any understanding of the world around him. He’s very sensory. He puts everything in his mouth, loves water and greets the world with a smile, a shriek, a clap and a licky kiss. Developmentally he’s somewhere around one to two and has been for several years now. Doctors never really found out why. They’ve called it severe global development delay, profound multiple learning disabilities and now Autism.

Isaac does not believe in sleep, or rather he sees it as an unnecessary waste of good partying time! He’s awake a couple of hours each night. Sometimes he’s awake and miserable. Sometimes he’s awake and everything is hysterically funny.

We have been on a mission since he came out of a cot 5 years ago to find a way to keep him safely in bed at night. I pride myself on being a quite ingenious, can do person who doesn’t give up easily. Sadly those traits are obviously hereditary and Isaac, or Houdini as he’s sometimes referred to, has frequently beat us!

Mummy and Daddy make DIY safe bed frame out of wood with long curtains tucked under his mattress- score one to team parent. Isaac wriggles between the gap between the curtains, escapes at 2am, knocks the bath taps on and floods the bathroom. Score one to team Isaac.

Mummy adds poppers to the curtains to try to keep Isaac in his DIY bed, 2-1 to team parent. Isaac finds a gap at the foot of the bed, escapes, and we wake to find him in the kitchen grinning at us, sat in a puddle of squash someone left out, trying to gnaw his way into a tub of custard. Team Isaac evens up the score.

Through it all Isaac giggles and claps and seems thrilled to have us join his 2am party, and we scratch our heads and go back to thinking how we can next keep him safe and get some kip.

At home at the moment our latest combination of a wood frame and a fabric cover is working. He loves enclosed spaces and seems to need to block out the visual stimulation of his room to be able to settle,  but I know soon he will beat us again, it’s not a long term solution. He’s made very little developmental progress in the last 5 years and we’ve accepted one day we will be caring for a non verbal, incontinent, adult toddler with severe learning disabilities, no real understanding of the world around him – five foot something of pure mischief.  As he gets stronger and bigger it’s essential we keep him safe in his bed at night.

We get by with a sense of humour, supportive friends  and a lot of coffee! Going away on holiday however is a whole other ball game. The last time we attempted to stay in a hotel we had the management knocking on the door frequently throughout the night telling us they’d had complaints about a child running about and shrieking and clapping. That was pretty hard.

Today a letter came through the post though and the world became a better place! Our Cerebra grant for a safety sleeper had been confirmed. This amazing piece of kit fits into a small suitcase to go away with us, and folds out into a fully enclosed and very cool looking safe sleeping tent . It can go everywhere with us and when team Isaac next defeats our DIY home solution, instead of weeping over triple strength coffee and eating a whole packet of Jaffa cakes, we will simply put the safety sleeper up in his room as his permanent bed and know he’ll be safe. This is our forever solution. Everywhere we go, it will pack up into its case and come with us. And that will restrict the bathroom floods and squash/ custard spillages and all the other mischief he gets up to, to just the daylight hours!

Not in a million years could a family like ours afford the four figure sum for this incredible product. Without Cerebra’s grant, while we would single-handedly keep the world wide coffee industry afloat, we would be facing a pretty bleak and sleep deprived future and we have got pretty close to just giving up on attempting to take the children away on holiday and chasing Isaac about all night.  I will be watching the post, our game changing life changing safety sleeper should be delivered next week and we have booked to go away the week after for a few days to try it out. So from the bottom of our hearts, thank you Cerebra, for giving us a reason to hold onto our sanity and dare to hope that this is a big part of our happily ever after”.