Tag Archives: research

Life online for young people with SEN

Dawn Cavanagh

Dawn Cavanagh

Dawn Cavanagh, whose teenage son has autism, considers the benefits and challenges of life online for young people with special educational needs (SEN) and discusses ways to teach young people with SEN to navigate the internet safely, while making the most of what the internet has to offer.

Like it or not we are living in a digital age. Today, you can get online anywhere, at any time, and can communicate with almost anyone in the world. Ensuring that young people make the most of the exciting opportunities the internet has to offer, while also being helped to stay safe online is high on the public agenda. But what if your child has special educational needs (SEN)? What then?

Children with SEN include those with emotional, social or behavioural difficulties, learning difficulties, and other complex needs. There are many ways in which young people with SEN are vulnerable to danger on the internet. Children with SEN (and especially those with a diagnosis of autism) may make literal interpretations of content online, which may affect how they respond; they may not understand the concept of friendship, which may lead to them being more trusting than their peers. They may also struggle to make judgements about what information is safe to share or not recognise that they are being bullied. Furthermore, they may not appreciate how their own behaviour may be construed by someone else as bullying.

However, it is not all doom and gloom. There are benefits to using the internet for young people with SEN. The internet can be used in creative and fun ways to support learning and social interaction. For my teenage autistic son, the interactive online gaming phenomenon Minecraft allows players to build and create textured cubes in a 3D virtual world. Minecraft enables my son to have complete control of his environment and to engage in his special interests: time travel and Doctor Who. There is nothing he loves more than jumping in and out of his tardis, exploring new dimensions. Minecraft has helped to nurture his conceptual thinking, so that he has become more adept at problem solving. For example, he has worked out how to operate the tardis without any instruction. Whilst my son gets confused and distressed by others’ attempts to join him in his gaming, some young people with autism benefit from Minecraft’s multiplayer mode, which can help develop their communication and social skills, as well as enhance their creativity.

AutCraft (Duncan, 2015) is a Minecraft server specifically for autistic children and their families. The environment has been modified so that players can roam free from the dangers frequently encountered in the game’s regular modes. While all this is good, the downside of Minecraft is that like so many video games it has the potential to become addictive. This is especially concerning for children with autism who may have tendencies towards obsessive compulsive type behaviour. Excessive screen time is a recurring concern for many parents, especially in terms of time spent away from family, as well as lack of exercise.

Young people with SEN are at greater risk of cyberbullying, online grooming and exposure to inappropriate content, yet less research has been conducted in this area compared with the mainstream population. Of the body of research that currently exists, the risks for a young person with SEN appear to be more profound due to increased vulnerability and social naivety. As a group they are more likely to be lacking in sexual knowledge, have difficulties with compliance or expressing consent, as well as recognising abusive situations. Furthermore, they are less likely to have opportunities to have romantic or sexual partners, so may seek the company of strangers online and offline when lonely (Normand and Sallafranque-St-Louis, 2016).

Research has revealed that many young people with SEN have experienced cyberbullying and discriminatory behaviour such as disablist language or jokes about disability online. This can lead to considerable emotional and psychological distress. Research conducted in the Netherlands, looking at the effects of cyberbulling among students with intellectual (learning) and developmental disability, found that higher rates of cyberbullying are associated with lower levels of self-esteem and higher reported depressive feelings (Didden et al., 2009). Research undertaken by the Anti-Bullying Alliance (England and Wales) (2013) revealed that as well as having experienced cyberbullying and discriminatory behaviour many young people with SEN felt that they had not been taught how to use the internet, or to stay safe online. Moreover, some young people used the internet to create an anonymous persona to hide their disability or actively avoided the internet altogether.

A more recent study (Bannon, NcGlynn, McKenzie and Quayle, 2015) investigating the perception of online risks by young people with SEN (aged 13-18 years) in Scotland revealed that while many young people with SEN were aware of a range of risks online, and could discuss how to stay safe, not all were able to put appropriate safety strategies into practice. Some described befriending strangers on the internet. There were examples of intentional risk taking, perhaps due to peer pressure to perform. For others risk-taking in their online behaviour appeared to be linked with poor understanding of the implications of their actions and/or difficulties with inhibitory control.

There was much variation in supervision and monitoring of online behaviour, with some families putting no supervisory strategies in place, whilst others blocked access to certain content, checked history and/or placed limits on the amount of time the young person spent online. Interestingly, while some young people sought the advice of parents, and occasionally teachers, about managing online risk, many also took the opportunity to learn from peers, especially if they thought that disclosure to a family member was likely to result in removal of internet privileges. Further research is needed, perhaps including parents and teachers, in terms of how best to support young people with SEN to stay safe and strong online, whilst making the most of what the internet has to offer.

So, how do we teach young people with SEN to navigate the internet safely? The first thing is to recognise that life online presents young people with SEN with different challenges, and then to tailor strategies accordingly.  Cerebra (cited in Digital Parenting, 2016), the UK charity dedicated to improving the lives of children with neurological conditions, make the point that young people with learning difficulties can sometimes be more trusting of strangers than other young people. The Cerebra guide (cited in Digital Parenting, 2016) suggests encouraging the young person to use a pseudonym (a fictitious name) online and getting him or her to seek help from a trusted adult if anyone asks for personal information, such as their address or where they go to school. The young person might also benefit from joining an online community that has been specifically set up for people with learning difficulties.

Further suggestions for limiting risk online for children and young people with autism and learning disabilities is available in Cerebra’s guide: Learning Disabilities, Autism and Internet Safety, available on Cerebra’s website.

©Dawn Cavanagh 2017, 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.

­­­­­­­­­References

Anti-Bullying Alliance (2013) Cyberbullying and children and young people with SEN: the views of young people. Retrieved 13th February 2017. Available from https://www.anti-bullyingalliance.org.uk/sites/default/files/field/attachment/disabled-young-peoples-views-on-cyberbullying-report.pdf

Bannon, S., McGlynn, T., McKenzie, K. & Quayle, E (2015). The internet and young people with Additional Support Needs (ASN):  Risk and safety.  Retrieved 13th February, 2017. Available from http://www.sciencedirect.com/science/article/pii/S0747563215000321

Normand, C.L. & Sallafranque-St-Louis, F (2016). Cybervictimization of Young People with an Intellectual or Developmental Disability: Risks Specific to Sexual Solicitation. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/25871891

Didden, R., Scholte, R.H.J., Korzilius, H., Jan, M. H., Moor, D.E., Vermeulen, A., O’Reilly, M., Lang, R., & Lancioni, G.E (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/19466622

Digital Parenting (2016). Vodaphone UK. Retrieved 13th February, 2017. Available from http://www.vodafone.com/content/digital-parenting.html

Duncan, S (2015). Autcraft.  Retrieved February 13th, 2017. Available from http://www.autcraft.com/

Useful links:

Anti-Bullying Alliance: http://anti-bullyingalliance.org.uk/

Autcraft:  http://www.autcraft.com/

Digital Parenting website:  http://www.vodafone.com/content/digital-parenting.html

Digital Parenting magazine: http://www.vodafone.com/content/digital-parenting/learning-and-fun/digital-parenting-magazine.html

Special Friends (Free online community for people with learning disabilities, and their parents and carers): http://www.specialfriends.com/public/

Video Game Addiction Helpline: http://www.videogameaddiction.co.uk/gaming-addiction/minecraft.html

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.

Behavioural interventions for sleep problems in people with an intellectual disability: Do they work?

This is a summary of a recently published academic paper. Sleep problems were identified as one of the least well studied problems in the lives of people with an intellectual disability. It is an issue that affects the health and well-being of those who experience them, and also that of their parents/carers.

Download research summary pdf

Dr Eduard Gratacós – Why health starts before birth

Dr Eduard Gratacós

Dr Eduard Gratacós

Our research team at the University of Barcelona looks at identifying deviations in foetal brain development as early as possible to help prevent and/or minimise childhood disability.

Dr Eduard Gratacós explains his journey into research and why he believes that health starts before birth:

“I was trained in Obstetrics & Gynecology in the early 1990s. Soon after starting my medical residency, I found two new worlds I was not aware of, the fetus and research. Two discoveries that changed my ideas about what I wanted to be in my professional life.

Concerning fetal life, I had always thought that Obstetrics was just helping women to deliver. It struck me to realise that inside the mother there was the infinite world of another patient. Twenty-five years ago this concept was still quite new. Ultrasound had just revolutionised pregnancy follow-up. The mystery of what was happening inside the womb, hidden for all the history of medicine and humanity, was now becoming visible, and in real time! We were just in the beginning, but it was so amazing to think about the fetus as a patient, just as a child or an adult was. This notion impressed me so profoundly that I decided to dedicate my career to fetal medicine.

Research was my second discovery. During medical school, my ideas about me in the future were of a surgeon spending most of his day performing complicated operations. Just a few weeks after I became a resident, I started collaborating in research projects, and this quickly transformed the way I saw things. I suddenly realised that medicine existed thanks to research. The concept that you could create new knowledge that could eventually change the lives of people was amazing. It seems so obvious but you can study medicine for years and rarely think in these terms. Within a few months I was completely decided to dedicate my professional life to research.

So I ended up as a clinical researcher in fetal medicine. I first did my PhD in Barcelona and then moved to Belgium for a few years, where I had the privilege of joining one of the groups that pioneered fetal surgery in the world. When I came back to Spain in the early 2000’s I started a fetal medicine and surgery program. Over these years, we grew from a very small group of enthusiastic young people to a renowned international research centre with more than 75 people and one of the greatest scientific output in fetal medicine. I think our main findings can be summarised in one sentence: health starts before birth. The way our brain and heart will work during our lives is largely influenced by the life conditions in our mother’s womb. Pregnancy complications like preterm birth or fetal growth restriction may affect as much as one in ten pregnancies, and these fetuses and future children will be more prone to suffer neurodevelopmental and other health problems. We are looking for ways of reducing the burden of these pregnancy complications.

We have been supported by Cerebra for the last 13 years. We first demonstrated how children born preterm or with growth retardation had more neurodevelopmental problems. We later showed that ultrasound and magnetic resonance imaging were useful to understand how these problems occurred, and could help to identify those fetuses and babies at highest risk. Some of our research findings have been incorporated to current clinical practice. For instance, most medical societies recognise that brain Doppler must be used to identify and timely deliver fetuses with late-onset growth restriction. This change in clinical practice may benefit thousands of women in the UK, and hundreds of thousands in Europe and the world. In our current Cerebra research program we are investigating interventions that could protect the fetal brain and limit the consequences of brain injury. We also hope to demonstrate how maternal well-being is related with fetal and child neurodevelopment, and how we could provide tools to foster healthy brain development in utero.

Disease is part of nature. We as humans have the privilege and the capacity of investigating disease to understand it and trying to counter its effects on individuals. It may be hard for those suffering a disease to learn that research is so expensive and that it often takes a long time to achieve results that effectively improve things in “real life”. However, when we see where we are every ten years, we realise the impact of research. We must continue on this enterprise, for us and for the future generations.

Cerebra invests large amounts in promoting research and it does that in the most effective manner. With a policy of funding ambitious research programs for long periods, Cerebra allows researchers to undertake projects with a much higher chance of leading to real improvements. I think all Cerebra members, associates and supporters must be extremely proud and reassured that they are investing their money wisely and in a way that will change the life of many people in the future.

Cerebra has been with me for a substantial part of my research career, and I am extremely grateful and honoured for that. I hope that we can still do many important things together in the future. Thank you very much”.

Dr Gratacós is Professor of Obstetrics and Gynaecology and Director of the BCNatal national and international referral centre in Maternal Fetal Medicine.

This article is the latest in a series written by our Academic Chairs:

 

Chris Oliver – My Journey into Research: the Boy at the Pillar

Professor Chris OliverProfessor Chris Oliver explains his journey into research as well as the pioneering work of the Cerebra Centre for Neurodevelopmental Disorders.

“In 1981 I was training to be a clinical psychologist at the University of Edinburgh when the seminal documentary “Silent Minority” was aired on ATV. The content was a damning portrayal of abuse and inadequate service provision for children and adults with intellectual disability and was to prove more influential in driving reform than any government report of the day or since. One image in the documentary that has remained with me to this day was of a young boy tied to a pillar on the ward of a Victorian long stay hospital. The reason given for him being tied was that he banged his head very severely and this was how his behaviour was contained. After watching the documentary I made an unspoken commitment to the field of intellectual disability and considered careers in advocacy or clinical service. As I learned more about the field, it became clear to me that one part of the problem that underpinned poor service delivery was a lack of knowledge about how people with the most severe disabilities and difficult behaviour might best be supported and what interventions might decrease disabling behaviours such as self-injury.

Months later I was interviewed for a PhD position at the Institute of Psychiatry by Prof. Glyn Murphy, now at The Tizard Centre. After the interview she showed me around the treatment unit that I would work in for the next 12 years. As she did so, she espoused the same outrage at the documentary that I had felt but also spoke of how scientific method might inform our understanding of the behaviours that the boy at the pillar was showing. The combination of Glyn’s social conscience, scientific rigour and diligence was as inspiring to me now as it was then. Under Glyn’s tutelage, I was encouraged to understand fundamental causes of behaviour from different perspectives and develop new assessment and intervention methods that could be used in clinical practice.

Fast forward thirty five years and my programme of research still focuses on the same behaviours that I began to understand as a raw PhD student. With funding from Cerebra, my research team has been able to describe how genetics, brain development, medical conditions, cognitive profiles, emotion regulation and the environment each contribute and interact to cause difficult behaviours in children and young adults with intellectual disability. We have also tackled new areas such as sleep disorders, overeating, repetitive behaviour, and autism in genetic disorders. We have learned how pain, difficulties with communication, cognitive difference, impulsivity and sensory sensitivity can influence behaviour and we are developing new assessments to ensure these areas are attended to.

The 35 years that have flown by have been characterised by themes that stayed with me from my time as a PhD student. A prominent theme is that I have continued to work with students and postdoctoral research fellows who speak of and are driven by their social conscience, however derived. It is unfashionable in science to mention such a thing but not for us. A second theme has been the licence to study and research fundamental causes of behaviour and generate new information about how behaviours might be treated effectively. This opportunity provided by Cerebra is invaluable and contrasts with the majority of funding opportunities that focus on confirmation rather than innovation and force researchers to pose less ambitious questions rather than break new ground. A third theme has been a commitment to robust evidence and the importance of scientific method or “Data not Dogma” as a friend once printed on a t-shirt for me to celebrate the award of my PhD.

Since we opened the Cerebra Centre in 2008, 40 doctoral students have passed through its doors, each contributing in a unique way to what we know and do. The way we approach self-injury, sleep disorders, repetitive behaviour and a multitude of other problems is very different now to how it was when I watched “Silent Minority”. Further research challenges await us, such as deepening the understanding of the most severe self-injury and intractable sleep disorders, but in the last eight years we have generated a raft of research findings and there are 40 more people with doctoral degrees who can rise to these challenges and that’s got to be a good thing. However, one thing that has not changed is the reluctance of government to convert research findings into mainstream practice. I was reminded of this in 2011, when the BBC screened a Panorama documentary describing abuse and inadequate service provision at Winterbourne View. My mind returned then to the boy I had seen at the pillar, thirty years before.

I have learned two important lessons on my unfinished research journey. The first is that with determination, data and diligence, combined with a team blessed with more than their fair share of smarts, it is possible to change the most difficult behaviour, for most people, for most of the time. The second thing I have learned is that to change the behaviour of government, then in the words of Chief Brody, “You’re gonna need a bigger boat”.”

Prof. Chris Oliver, Professor of Neurodevelopmental Disorders at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

Managing Challenging Behaviour Factsheet

Challenging behaviourSome behaviours are a challenge to professionals, teachers, carers and parents. This factsheet gives information on how to manage challenging behaviour by considering five key points:

What is challenging behaviour?
Why does challenging behaviour happen?
Understanding challenging behaviour
Where do I find professional help?
What further information is available?

Download Challenging Behaviour Factsheet PDF

Published 2015. This edition 2016. Review date 2018


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Cerebra Survey Results – Diagnosis Delay and Disabled Children

Families of disabled children are experiencing substantial delays in getting an NHS diagnosis. Support services are not always offered, when they are they often do not meet the needs of the family and too few parents are being given written information when they receive their diagnosis.  Moreover parents are reluctant to complain about any of this. This is the conclusion drawn from a survey of Cerebra members carried out in October 2015.

The laws of the four nations of the UK place enforceable duties on public bodies to provide education, health and social care support for disabled children. The research evidence suggests that disabled children and their families experience considerable difficulties in accessing these rights and in consequence, in accessing good quality health, social care and educational provision.  To help address this, Cerebra fund a research programme – The Legal Entitlements Research Project.  A key element of the research is to see if effective processes can be developed to enable commonly occurring social, health and educational support problems to be resolved speedily and with the minimum of conflict.  The research programme works by accepting referrals from family members, those referrals are answered individually but records kept of the issues referred.  An analysis of the referrals identified a number of ‘generic problem areas’ and a recurring theme ‘in many of the cases’ is that of delay:

  • Delay in carrying out assessments and reaching a diagnosis;
  • Delay in putting in place support services or adaptations;
  • Delay in responding to expressions of concern by families.

To test this finding of delay further, between 21st September and 14th October 2014 we carried out a survey of Cerebra members.  While any survey can only provide a snap shot of the experience of those that answered the survey the high response rate of 1937 parents, in a three week period, is noteworthy.  Of those 1937 respondents, 1452 (or 74%) reported that they had experienced a delay that they identified as being problematic.

Summary of Survey Results

We asked ‘how long did you have to wait for a diagnosis (from your first request to the delivery of the diagnosis).  A significant number of respondents (783 or 44%) had to wait over two years for a diagnosis; of note is that 320 respondents had to wait more than 5 years.  These are substantial waits in the context of childhood.

We asked if families had been given a reason for the delay and over half (53%) were given no explanation.  Of those given an explanation, the most common explanation was ‘reluctance to place a diagnostic label on a child’ and/or ‘shortage of suitable experts/waiting lists’.

We went on to ask if the respondent felt that harm had resulted from the delay and if so, what that harm was.  1024 respondents (71%) said that they did believe harm had resulted from the delay and that harm was categorised as:

  • Impact on the health and/or well-being of the child;
  • Impact on the education of the child;
  • Impact on the health and/or well-being of carers or other family members; and/or
  • Financial impact – this was largely about taking unpaid leave, reducing working hours or giving up work.

We also asked about the support the family received after diagnosis.  The majority of respondents (53%) said they were not offered follow-up support and of those who were offered follow-up support, 37% felt that the support offered did not meet their needs.  We asked respondents if they were given any written information about their child’s condition or signposted to organisations that could assist them, 59% said they were not.

Finally we asked respondents if they had raised any concerns or made a complaint about the delay in acquiring a diagnosis or lack of support following a diagnosis.  Only 457 respondents had raised any formal concerns and of those only 108 felt their concern was dealt with to their satisfaction.

This survey demonstrates that Cerebra families:

  • are experiencing delay, sometimes a very significant delay, in getting a NHS diagnosis and these delays are causing difficulties for families;
  • support services are not always offered and/or do not meet the needs of families;
  • too few parents are being given written information or signposted elsewhere; and
  • carers are reluctant to complain, when they do complain their concerns are often not dealt with adequately.

What is Cerebra doing to help address these issues?

We are developing a toolkit that aims to support families and their advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. UK law provides powerful rights to access such support services, but our research shows that this alone is insufficient. The law can be complicated and difficult to understand.  It can be daunting, exhausting and sometimes intimidating to challenge public officials.

The Toolkit aims to develop effective strategies that families can use for themselves or advisers can use with families.  Strategies that will help to unpick commonly occurring problems and to develop effective strategies for resolving them.  It is based on the idea that it is in no one’s interests, including those of the public bodies, to have these commonly occurring problems and that most such problems are capable of being resolved without lawyers and without great expense to anyone.

Keep a look out for the toolkit which will be with you soon.

Cerebra Research Presented at International USA Conference

Researcher Liz Halstead

Liz Halstead

Elizabeth Halstead, a member of Cerebra’s Research team at the University of Warwick, has been chosen to present her research findings on resilience in mothers of children with learning disabilities and autism at the Gatlinburg international conference in San Diego, California, in March 2016.

Liz explains more:

“For those of you who I haven’t been in contact with during my time at Cerebra, I am the maternity cover for the lead research officer position and based at Warwick University. For the past 4 years I have been working on my PhD at Bangor University, which is based around resilience, child behavioural problems and well-being in children with intellectual and developmental disabilities and their families  also known as The ReAL Project.

Some of you may have even participated in this research, and if so, thank you.  For my main project I did a large scale survey with over 350 mothers and fathers reporting on child behaviour, resilience and well-being.  We first looked at the mothers in the study and found that mothers who reported higher resilience had better well-being when faced with child behavioural problems.  In addition, children had better behavioural and emotional outcomes when their resilience was high.  Maternal depression was also found as a risk factor for child behavioural problems. So what does this all mean? Well it shows mothers of children with disabilities show resilience, which in this study meant:

·         Believing that positivity can come out of difficult situations

·         Creative ways can be found to alter difficult situations

·         Feeling a sense of control over your reactions

·         Being active when faced with losses encountered.

We still know very little about resilience, but this is a good start in showing some positives of having a child with a disability and we have yet to look at the fathers who participated in the study. I know a common question I get asked is what do I do now with these results we have? Well, the next steps are to tell other researchers what was found, tell parents and charities and to source more funding to continue developing this research which will hopefully lead to a useful intervention.  We want to make professionals and practitioners aware of the resilience of mothers, and what this means so this can be used in practice when working with families.

I applied to present this section of my research at this prestigious international conference in San Diego. This will have top academics and practitioners in learning disability and autism research present.  I am pleased to say my research was accepted and was also awarded the dissertation travel award.  This is the first step in getting our research out there.  In addition to myself, two of Cerebra’s academic chairs will be attending – Richard Hastings from Warwick and Chris Oliver from Birmingham. Some of Chris’s team in Birmingham, along with Chris, will also be presenting research they have done in Birmingham.

Research is a long process with many stages along the way, however we do our best to get it out there so the research you participate in leads to positive future projects and outcomes”.

Anxiety Guide: A Guide for Parents

This three part guide has been developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and Part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

 

Download 'Cerebra Anxiety Guide: A Guide for Parents' PDF

BMA Patient information awards_highly commended

Highly Commended in Special Award-Children in the 2016 BMA Patient Information Awards,

First published 2015. This edition 2015. Review date 2018.


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Cerebra Family Research Ambassador Project

At Cerebra we believe in listening to families and using what they tell us to inspire research, innovation and information.  One area that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services.

As a response to this Cerebra funds research by Professor Luke Clements to explore practical and effective ways of resolving the commonly occurring problems families face.  As a result we have developed a number of resources, based on cases raised with us by parents and carers within our Legal Entitlements Research Project. We have a lot of reliable, up-to-date and evidence based information and the job now is get that information out there for parents and carers to use to improve their family life.

Cardiff Law School, together with Cerebra, have been awarded funding by the Economic and Social Research Council (ESRC) to help us to improve the impact of our research.  With that money we have launched a new project, The Family Research Ambassador Project, which will involve parents and carers of disabled children in helping us to make our pool of existing information much more accessible and engaging to others.

The project’s main aims are:

  • to produce a ‘Problem Solving Toolkit’ that deals with these commonly occurring problems in accessing services
  • to test, improve and build on the toolkit
  • distribute this as widely as possible within various disability support groups and to parents of disabled children
  • to give parents and carers the confidence to tackle decisions and to feel supported

In the longer term we hope to write and publish a peer reviewed academic paper evaluating the Family Research Ambassador Project and (funding permitting) use our first intake of Family Research Ambassadors to train the next intake, with the aim being to spread this project as wide as possible.

We have taken on eight Family Research Ambassadors (FRAs) to assist in bringing this toolkit together and to circulate and promote this to disability support groups and social media.  We value their experience, skills and knowledge of disabled children and this is our opportunity to introduce them to you:

Alison Thompson is the mother of two young adults, one of whom has ADHD and Asperger’s syndrome. She is the author of ‘The Boy From Hell: Life with a Child with ADHD’ and speaks regularly about her experience of parenting a child with the condition. She is also a trained coach who works with parents of ADHD children to help them build their confidence and overcome some of the struggles of parenting a child with special needs.

Lisa Reakes has been helping the families of disabled children through her part-time volunteer work with Somerset Parent Carer Forum and as SEN parent governor. Her daughter has a physical disability with epilepsy.  She has a background in fundraising and marketing.

Claire King has 2 boys aged 5and 8. As a mum of a child with hearing loss, ADHD and Asperger’s syndrome, she has first-hand experience of the challenges parents face in everyday life as well as the challenges in accessing the services available.  Claire is very passionate about helping other parents who face similar obstacles and strives to assist others overcome these barriers.

Dawn Cavanagh lives in Pembrokeshire with her husband and son. Her son attends a special school and has autism, epilepsy, ADHD and learning difficulties.  She is currently studying for a master’s degree in Abnormal and Clinical Psychology at Swansea University.  Her particular research area is learning disabilities and bereavement.  She is also a volunteer for adults with learning disabilities.  In her spare time she loves to dance or go for a stroll along one of Pembrokeshire’s beautiful beaches.

Sian Taylor is a Senior Lecturer at Cardiff School of Management, Cardiff Metropolitan University. She has two boys aged 10 and 6. The youngest has complex special needs. Sian is an Ambassador for Cerebra, a Trustee for WellChild and also a member of their parent advisory group and regional advisory group. She participates in a University of Surrey steering group for eHealth and also a focus group for Diverse Cymru. She is interested in many areas regarding child disability.

Karin Crimmins is Mum of 2 wonderful girls, the youngest of whom has Down’s Syndrome. She is passionate about sharing information, assisting and supporting others in relation to the provision of health, social care and education support services. She understands the frustration and hurdles that parents and carers face and that not all parents are able to advocate for their children, hence her desire to be involved in this project. Karin has been able to ensure that her daughter receives the correct level of support for her needs and wishes to pass on her knowledge and experience to others. Karin has a very active role within the voluntary sector as she is the membership secretary/newsletter editor for the South East Wales Down’s Syndrome Support Group and is an administrator for the Future of Downs group.

Marie Macey is the mother of three children, her youngest son having autism and moderate/severe learning disabilities. She is a retired social worker, having worked largely with supporting foster carers, but also worked in a children’s disabilities team. She has been involved in the Legal Entitlements Research Project since the beginning and is delighted by its development. She has also been actively involved in various disability support groups in and around Cardiff for the last 20 years, promoting the project through these groups.

Wendy Merchant is a registered child nurse who is committed to advocating child, young people and family rights and involvement. Wendy is an experienced facilitator who is good at motivating others, chairing meetings and seeking sources of support for families. She is a self-motivated individual who is passionate about the delivery of compassionate care in the NHS. Currently Wendy is a PhD Student at UWE, Bristol, researching “Caring for children with special needs on a hospital ward. Mothers and nurses experiences.” Wendy has experience of supporting parents as an organiser of a parents support group, as a family support worker and on an informal basis as a mother of a disabled child.

We will bring you updates on the work of the project throughout 2016.