Author Archives: Guest Contributor

Brody, Me and Global Development Delay

Brody

Brody

Laura is mother to 5 year old Brody who, despite having lots of health issues, has no definitive diagnosis. Laura writes about their journey as a family in her blog Brody, Me and GDD. In this blog post, Laura explains their journey as a family.

“Our beautiful Brody entered the world just over 5 years ago. He passed all of his newborn tests and was a really content and happy baby. I was completely unaware of undiagnosed genetic conditions back then and the journey we were about to take together. He was, and still is, is a total joy (forgetting about when he has a tantrum of course!).

I began to notice that he wasn’t developing typically when he was a few months old. A classic case of mother’s intuition coupled with all of the baby and toddler classes I signed up to.

First there was Water Babies, where all of the other babies looked ahead when they were placed on their tummies and held underneath their chest in the water. Brody struggled to keep his head up at all. I’d go back to the changing room afterwards amazed at how all of the other mums would let their babies sit on the hard floor with a towel wrapped round them whilst they got dressed. Not scared of them falling back and hitting their heads at all – because they didn’t fall back.

Then there was Rhythm Time where all of the babies babbled and waved on queue. As the months went by they were able to perch on their mum’s knees with ease and understood to go and get their “rhythm sticks” out of the basket and when to put them back. I’d wedge Brody in-between my legs so that he was well supported and the woman who ran the class would kindly pass me our rhythm sticks. More often than not, I’d swallow the lump in my throat as another child took pleasure in taking ours back to the basket afterwards.

Next up was Toddler Sensory. The last class I put myself through. Where all of the toddlers were able to walk along the obstacles, understand the basic games, attempt to sing along to songs and eat the snacks without gagging or throwing up.

Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise.

He was “just slow” and “a typical boy”.

And the constant vomit that we experienced on a daily basis and inability to eat solid food was just reflux. Food aversion and delayed speech? Apparently also refluxes fault.

Then just before Brody turned two, he had a cluster of seizures and was hospitalised for a few days. It was a pivotal moment for us as a family. The health professionals began to take notice and I was told he had Global Development Delay. We had no answers, but a list of new people in our lives – paediatricians, an OT and a physiotherapist, to name but a few.

Lots of parents have similar journeys and tests go on to reveal a diagnosis. However, our journey has been one that’s lacked answers. What we do know now, a few years on, is that Brody has a learning disability, autism and epilepsy. He also has low muscle tone and hypermobile joints. But Doctors can’t find a unifying diagnosis to explain his disabilities and symptoms so he remains primarily undiagnosed, despite lots of tests.

We are part of a genetics study called the DDD (Deciphering Development Disorders) study, but this may not bring us answers and can take years to get results. I’m already knocking on genetics door to get us on to the 100,000 Genomes project, but of course, it’s never that straight forward. We’re on a waiting list and apparently it’s “amber”.

We are living in limbo.

But I know we’re not alone thanks to a charity called SWAN (Syndromes Without A Name) UK. Amazingly, it’s estimated that 6000 children are born every year in the UK without a diagnosis to explain their disabilities. And many of these children remain undiagnosed into adulthood.

We may never get a diagnosis.

That’s not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.

SWAN UK is the only dedicated support network for families of undiagnosed children in the UK and it’s so important to me that other families know that it exists.

The mum who is currently attending the baby and toddler classes, noticing gaps in her child’s development and the difference between them and their peers.

The mum who’s told everything is “just reflux”.

The mum who’s told that boys are “just lazy”.

The mum who is knocking on doors but not yet being heard.

The mum who’s just heard the words Global Development Delay in a white walled Doctors room, or a more honest “we don’t know”.

And the Dads too of course!

I want them to know as soon as possible that they’re not alone. I wish I’d known that sooner. It may not change the path that you’re on, but it will definitely help you on the journey.

To find out more about SWAN UK visit www.undiagnosed.org.uk or email joinus@undiagnosed.org.uk.

And if you want to follow our journey, you can find us at Brody, Me & GDD on WordPress, Facebook and Twitter“.

Don’t forget you can also give our freephone helpline a call on 0800 328 1159 if you need help or advice, or visit our website.

Enna Thea’s Story

Enna Thea playing all ability football

Enna Thea playing all ability football

“My name is Enna Thea Kul – Want. My friends are Ilias and Lamisha. I live on planet earth, in London. My favourite toy is Mr Banana, I sleep with him. My mum and Dad are called Catherine and Christopher.

I have Cerebral Palsy, this means that I find it difficult to walk. Sometimes when I do involuntary movements I feel like half my body is in a whole different solar system. Most people call people like me and me “disabled” but I DO NOT. I believe that it should be called “abled” SO I HOPE YOU UNDERSTAND!

I go to Columbia Primary School. I live in East London. My teachers in 2016 to 2017 are Ms Moloney and Ms Reynolds. I’m in year 5, Amethyst class.

I’m a car spotter. Here are some car names Lamborghini, Mercedes, Cadillac, Maserati and Bugatti. My favourite football team is Arsenal FC. I play all ability football with Arsenal (not the players) at William Tyndale school. My favourite player of all-time is Thierry Henry and of nowadays they are Alexis Alejandro Sanchez Sanchez, Daniel Welbeck and Mohamed Naser Elsayed Elneny”.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Mair Elliott – So I Did It!

Mair on her travels

Mair on her travels

We share Mair Elliott’s latest blog on living with mental illness and autism. In this post Mair shares her experiences while travelling abroad this Summer.

“So I did it! I managed to not only survive, but to experience and enjoy travelling to its full extent (low points included).

To many travelling around Canada for roughly 6 weeks might seem like no big deal, just an extended summer holiday. But for someone like me it is a momentous achievement. If you’d have asked me even a year ago of it was possible for me to do something like this I would have said no.

When I say ‘someone like me’ I am referring to someone who on a daily basis faces barriers, someone who consistently has to fight to keep their head above water. Someone that finds the external world confusing and sometimes terrifying. Someone with Autism and Mental health problems.

In the weeks leading up to departure I could feel the anxiety whipping up a storm. Already the idea of a lack of routine for 6 weeks was affecting me both mentally and physically. As we were making final plans a deep feeling of dread and uncertainty was rushing through my veins. Excitement and the need for adventure were also thrown into the emotional cocktail, leading to an overall confusing and overwhelming mixture.

Having made it to Gatwick and flown to Toronto airport I suddenly found myself with my head in a toilet bowl watching my stomach contents spill out of me like a fountain. I was told I wasn’t allowed to fly to our final destination, Vancouver, and so myself and my friend spent the night trying to sleep on the airport floor. It makes a good story, but at the time I was trying to figure out why I had fallen so ill, was it food poisoning? Had I eaten something I was allergic to? Was it a stomach bug? It is only now, nearly a month later, that I’m realising it was probably anxiety.

Staying in hostels was interesting to say the least. I am not someone who can handle close proximity to other people. People I know well, like family and friends, then it’s fine – strangers are another matter. Having said that, I felt I dealt with the hostels in Vancouver, Jasper and Quebec city with some grace and patience. The hostel in Montreal may have been weak point. Being a light sleeper would be an understatement for me, so when we were in a dorm with a lady that snored louder than a horse with a cold I may have lost my temper. I removed myself from the situation before I blew my top, but staying in the hostel was no longer an option. Luckily, I had stored some emergency money away and I used it to book a hotel room for myself and my friend for the remainder of our time in Montreal.

There were sleepless nights (thank the pharmaceutical industry for Zopiclone!), lack of an eating routine, stress, anxiety, generally feeling unwell a lot of the time and a few times I just wanted to fly home. You may ask why I would put myself through all of that, or was it even worth it. And in truth, it was difficult, but my god it was worth it. All of the negative things I experienced were nothing to the places I saw, the beautiful scenery, the great stories and adventures, the interesting people I met, the magnificent creatures I witnessed and the sheer achievement of knocking down those barriers and proving my doubts and anxiety wrong.

I am so proud of myself, especially looking back on where I started. Almost exactly three years before we flew out I was discharged from the Psychiatric unit. In those three years I have achieved more than I ever thought possible, from creating the S4C and ITV programme with the team down in Cardiff, speaking at events of all shapes and sizes, becoming a trustee of an amazing charity, to learning how to look after myself and manage my mental health problems.

I am not prepared to allow the challenges I face to stop me from doing the things I want to do. I am willing to put the work and effort into overcoming the barriers which potentially could disable me. I also have the patience and endurance to survive the more difficult times. After being so unwell, having been incapable of looking after myself, having not been able to see how truly beautiful this world is and having contemplated mortality from the darkest of corners, I am more aware than ever that I only get one life – I am not going to let those demons which once controlled me to ruin or take my life away from me. And I hope that I can prove to anyone who faces difficulties, whether it be Autism related, mental health problems, or even just day to day issues, that firstly with hard work, perseverance, bravery and some grit you can overcome any barrier you face. And secondly, things can and do get better.

It’s onwards and upwards for myself, the next challenge is completing a year long college course. And of course, I will be doing a few campaigning bits and bobs in between, including speaking at a reception in the House of Lords in October”.

This blog post was originally published at Mair Elliot: Living with Mental Illness and Autism

You can read more of Mair’s articles here.

CP and Me

Sallie

Sallie

We are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article sixteen year old Sallie tells us her story of living with cerebral palsy (CP).

“When people say physical disability, most people think that this means someone who uses a wheelchair. This isn’t always the case. I’m Sallie, and I suffer from mild cerebral palsy. You might not understand what that is. It’s basically a form of muscle tone. The muscles in my ankles are tighter than most people’s which means that my feet turn in making it hard to walk.

Looking at me, it might seem that I don’t look that disabled. But it is obvious when I walk that there’s something wrong. My toes turn in as I walk, and my ankles are weak on one side and stiff on the other which make it incredibly hard to move. I have very little flexibility in my ankles, and this means I can’t keep shoes on. Unlike a normal girl of my age, I can’t wear slip on shoes or high heels because my balance is poor. This has always been the case – so I’m used to it. We don’t know if this is anything to do with my condition but my feet have always been really small – a whole size apart. I’m lucky if I can fit into a size three.

I’m by far not the normal person. Due to my increased muscle tone, I didn’t walk until I was around two and a half. I was lucky, though. Due to my specialist physiotherapists, I was able to teach my feet to stay down so I could walk on the whole of my foot rather than the toes like most people with cerebral palsy. This is why I didn’t walk until I was over two.

My CP made school quite difficult. I was more mobile then than I am now. I was quite a tomboy and preferred to try playing football with the boys. They let me play, but my slow speed meant I was often left out, unintentionally. I was unable to run around with the others which made making friends really tricky.

2010 came and I had an operation on my feet to try and release the tone in my muscles to improve my walking. I was confined to a wheelchair for two months, unable to do anything myself. But, if it hadn’t been for my surgeon, I wouldn’t be able to walk the way I can now. I have lots of physiotherapists, surgeons and paediatricians whose work has allowed me to get the best I can out of life.

I often got clapped just for just attempting to run at sports day – I got the pity clap. Most people thought I couldn’t do sport – but I proved them wrong. In 2010, shortly after my operation to split my tendons, I took up swimming with the Gloucester City Para Swimming Team. To date, I am now a six-time national qualifier, four-time international qualifier and double British Record Holder in the 4x50m 34 point medley and freestyle relays.

This is truly a case of I can do it – not what I can’t do. I proved people wrong – disability does not mean you can’t do sport. I have a dream to compete in the 2020 Tokyo Paralympics, and I will keep working hard to reach that goal. If you have a disability, you are not a sub-human, you are a superhuman”.

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

A Father and Teacher’s View on Inclusive Education

University of Warwick logoIn the first of a series of articles Olivier Huyghe considers inclusive education and whether it works.

Olivier is an SEN Teacher developing Inclusive Education and a Family Research Ambassador Project Member from the Cerebra Family Research Group at the University of Warwick.

What is inclusive education and does it “work”?

As a teacher and as a father of a child with Downs Syndrome who has special educational needs, I have always been interested in inclusion and how to make sure all pupils have access to an education adapted to the way they learn best.

I have taught in mainstream secondary schools, in Secure Training Centres for teenagers, in the mental health unit of a hospital as well as in different special schools. This has given me a broad experience of different teaching environments, especially with a focus on teaching children with special educational needs (SEN).

In a series of short pieces, I would like to share with other parents my personal experience, and also my insight from research and professional practice. This first piece focuses on what is inclusion and whether it works, according to research evidence. I am sure this is a question that goes through the minds of many parents, especially those who have started thinking about schools. In the follow up article, the focus will be on what ‘good’ inclusion should look like.

For a long time, parents of children with disabilities or SEN were encouraged to send their children to “institutions” or special schools when they were of school age. More choices are now available such as those in the article Choosing a school for a child with SEN, and children can access their local schools through inclusive education.

The legal framework for inclusive education

In England, the discussion of integration and inclusion started around the time of the civil rights movements of the 1960s .

More recently, in 2001, the Department of Education (DfE) published a statutory guidance – “Inclusive Schooling: Children with Special Educational Needs” providing practical guidance on how to offer inclusive education for children with special needs in mainstream schools.

The guidance listed the principles of an inclusive education service as:

  • Inclusion is a process by which schools, local education authorities and others develop their cultures, policies and practices to include pupils.
  • With the right training, strategies and support nearly all children with special educational needs can be successfully included in mainstream education.
  • An inclusive education service offers excellence and choice and incorporates the views of parents and children.
  • The interests of all pupils must be safeguarded.
  • Schools, local education authorities and others should actively seek to remove barriers to learning and participation.
  • All children should have access to an appropriate education that affords them the opportunity to achieve their personal potential.
  • Mainstream education will not always be right for every child all of the time.
  • Equally, just because mainstream education may not be right at a particular stage it does not prevent the child from being included successfully at a later stage.

In 2014 (updated in 2015), a new Code of practice has been published: “Special educational needs and disability code of practice: 0 to 25 years, Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities”. It sets a broader set of rules and guidance that parents can use to make sure their child can access the most appropriate educational provision.

The advantages of an inclusive education

Research has examined the effects of inclusion for children with SEN and those without. For children with disabilities and/or SEN:

  • Academic achievements are higher and pupils make greater progress in inclusive settings.
  • Inclusion provides a more stimulating environment with good role-models (academic, social and behavioural).
  • It can develop assertiveness, confidence and self-esteem.
  • Pupils feel part of the local community and valued as individuals in and out of school.
    They are more likely to move to secondary education.

For other pupils in the school who do not have SEN:

  • Inclusion changes children’s attitudes towards difference and disability.
  • It develops acceptance and appreciation of others.
  • Supporting peers’ with SEN in the context of peer support can increase non-SEN pupils’ academic achievements and self-esteem.
  • Repeated studies have shown that there is either no effect or there is a positive effect on the academic achievements of pupils without SEN in inclusive classrooms.

For the school as a system:

  • Inclusion supports school development: by understanding and responding to individual learner’s educational requirements and entitlements (for example some children need more time to learn than others). It leads to the restructuring of school cultures, policies and practices so that they respond to the diversity of all students. Inclusion gives opportunities for enriching learning and for education systems to embrace change and be more responsive to individual differences.
  • Diversity in education should be a reflection of diversity in society. It promotes inclusion in society and therefore helps fight discrimination.

While research is of course important for measuring what the impact of inclusion as a practice is, inclusion as a policy rests on moral imperatives and the way we – society – views difference and disability. Thomas (1997) suggested that “arguments for inclusion should focus on philosophical and ethical principles of equality”. He states: “the true cost of segregation is the stigmatisation and alienation of those people who would otherwise have been able and willing to take a fuller part”.

To conclude

Obviously developing access to inclusive mainstream education is a first step, but it is important to focus on the outcomes. Inclusive education is about creating more efficient, child-centred and flexible education systems, leading to better learning outcomes for all children. Achievements and acquiring skills for life should also be a focus of an inclusive mainstream education. Without positive outcomes and achievements, access has little value.
The existence of a legal framework and guidance is a good starting point of reference but does it guarantee an effective implementation of an inclusive education environment?

My informal discussions with parents who experienced inclusive education suggested that being included leads to many positive outcomes but it often requires close follow-up on what schools are doing and regular meetings to suggest improvements. On some occasions, parents have found it easier to opt for a placement in special schools because of “negativity” from their local mainstream school.

But this is an important discussion for another day! In my follow up article ‘From access to practice: what does good inclusion look like?’ I will share with you my reflections on the actual practice of inclusion in today’s schools.

References

Lyndsay, Geoff (2007) Educational psychology and the effectiveness of inclusive education/mainstreaming. British Journal of Educational Psychology, Vol.77 (No.1). pp. 1-24. ISSN 0007-0998

Sermier Dessemontet R., Bless G. & Morin D. Effects of inclusion on the academic achievement and adaptive behaviour of children with intellectual disabilities.

Thomas G, “Inclusive schools for an inclusive society”, British Journal of Special Education,Volume 24, No. 3 (September 1997)

Inclusive Schooling: Children with Special Educational Needs –  www.gov.uk/government/uploads/system/uploads/attachment_data/file/283623/inclusive_schooling_children_with_special_educational_needs.pdf

Special educational needs and disability code of practice: 0 to 25 years  www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

Inclusive schools for an inclusive society – www.academia.edu/619098/Inclusive_schools_for_an_inclusive_society

Luke Clements: How I Became Involved in Research and What I Hope to Achieve

Professor Luke Clements is Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. He explains how he became involved in research and what he hopes to achieve.

“I came to academic research relatively late in my career.  Initially I was a full time practising solicitor specialising in what is known as ‘public law’: claims against public bodies.

I realised however that winning cases did not necessary make public bodies change the way they behaved: quite often it made them more defensive.  Only a few people were able to take court cases as legal aid was often difficult to obtain. Even with support, challenging public bodies can be a dispiriting, exhausting and intimidating experience.

This realisation is why I became involved in research.  I was fortunate to get a post at Warwick University, then at Cardiff and I am now at Leeds.  For the last 20 years my research focus has concerned the law relating to the social care rights of disabled people and their carers.  During this period it has been accepted that social care law needed to be made more accessible.  This has recently resulted in reform legislation in England and Wales – for which I acted as the special adviser to the Westminster Parliament.

Streamlining the law is welcome but in itself insufficient to enable all disabled people and their carers to access their entitlements.  Public bodies face many competing demands and this can pose enormous problems for individuals with limited resources who are not familiar with the system.  What is needed are mechanisms that help families overcome these barriers.

Cerebra had also recognised this important need and in 2013 I was honoured to be awarded a Cerebra Research Chair to take this work forward.

The LEaP Project

Our programme, known as the ‘Legal Entitlements and Problem-Solving (LEaP) Project’ has two intertwined elements – both involving a high level of collaboration between the University and the Cerebra in-house research team.

Legal advice scheme

The first element is a practical legal advice scheme for families who are having difficulty accessing health, social care or other support services.  Requests are received and assessed by Cerebra staff and those cases which meet our eligibility criteria are referred to the Project Team for consideration.

In the second element of the LEaP Project we analyse the information generated by the legal advice scheme to help identify commonly occurring problems and practical mechanisms that can help families overcome these.  This research takes us in many directions.  One of these involves the use of ‘pro bono students’ to prepare reports on specific ‘commonly occurring’ themes and another concerns expert input from our Family Research Ambassadors.

Pro bono Student support

Universities have many excellent resources – not least their students.  With the cutbacks in legal aid and other advice agencies, many Law Schools are developing ‘law clinics’ that try to address these difficulties.  Cardiff Law School (where the research centre was formerly based) and Leeds have two exceptional pro bono law student programmes (pro bono is the fancy legal term for ‘free’!).

In the past few years our students have provided legal opinions on a wide variety of issues of central concern to families and these are published in the Digest of Opinions. This aspect of the programme is now focussing on systemic problems identified by the LEaP legal advice work (above).  Most recently this resulted in a report on the quality of ‘short breaks’ support in England and in the coming years we plan to research difficulties obtaining ‘Disabled Facilities Grants’, problems with school transport arrangements and the delay many families experience in obtaining a diagnosis when it is suspected their child may have autism or similar impairment.  This work feeds into our underpinning research (below) and also identifies areas where there is a need for an advice guide.

Family Research Ambassadors (FRA) Scheme

To understand ‘what works’ in relation to ‘problem solving’, families of disabled children are the best people to ask. Many have become experts in navigating the bureaucratic maze and scaling the administrative hurdles.  The FRA Scheme (first developed by our Cerebra Chair colleague Professor Richard Hastings at Warwick) brings together such experts by experience and with their help develops ‘problem solving’ tools (such as the ‘Toolkit‘).  The FRA members then disseminate the problem-solving expertise through regional training programmes, seminars, presentations etc.

We have just completed a very successful FRA scheme in the Bristol / South Wales region and with Cerebra we are seeking additional external funding to develop similar schemes in every region of the UK – so if you are able to help with this in any way – please let us know.

The underpinning research

Underpinning all these activities, the research at Leeds seeks to:

  • identify the key factors that build resilience – enabling families to continue until they have obtained the support they and their children need
  • identify the most effective mechanisms for resolving commonly occurring problems.

As part of his PhD research, my colleague Derek Tilley is undertaking empirical research on this question: pulling together the relevant data and experiences of the advice, pro bono and FRA programmes.

This is the most exciting, engaging and practical research with which I have been involved.  It is research that is having a direct effect – improving the lives of many families and also, through a constructive dialogue with the hard pressed public bodies, making significant changes to their practices”.

Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

I got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

Cerebra’s Legal Advice Research Project

cardiff university logoPublic bodies in the UK have certain duties to provide 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.

It is against this background that Cerebra’s research programme has been established at Cardiff Law School. Lizi Azadegan, from the Cardiff School of Journalism, tells us how the scheme is also benefiting students at the University.

“The programme established at Cardiff University Law School, with funding and technical support from Cerebra, is a service designed to provide legal guidance to the families and carers of disabled children. The programme offers free legal advice when families experience difficulties accessing their rights to healthcare and social care services. Research by Cerebra found parents and advisers are often in need of legal support when dealing with the statutory agencies.

The law students acting in the scheme provide legal guidance and advice under the supervision of qualified staff, firms of solicitors and other disability organisations. It targets a very niche group whose issues are very specific and complex.

Students have the opportunity to identify accessible and effective procedures and these enable disabled children and their families to maximise the benefits of their legal entitlements. The programme works alongside a number of national solicitors and barristers practices who assist with the drafting of legal advice documents that parents can refer to when dealing with local authorities.

Kate Millar, who is an undergraduate law student, has been involved in the scheme since it started in September 2013. She has seen the programme develop and speaks very positively about it: “Families can get legal advice which they might not have been able to access via other means due to finances. The programme means we can offer specific legal advice for their child’s particular case and cater for the complexities of each individual case”.

All the students praise the scheme and feel it is a much needed service, given the current social and economic climate. “With the government service cuts, it is important that the people who are affected have the means to challenge services they are being refused and that these families are in need of” (Olly, postgraduate law student).

The outcome of the programme means families attain well-rounded and specific legal opinions, while students are able to learn about how to meets clients’ needs and service the community. Kate Millar said, “As a student, you don’t always have an opportunity to use the skills you have to participate in society. The scheme is great as it not only provides a practical element to our legal studies, but it gives us the chance to support the community and use our professional skills to give something back to society”.

Other students on the programme are equally positive: “It feels great to be able to apply what we learn in Law School to day-to-day activities. It gives us students the opportunity to apply legislation to a worthwhile cause and give help to someone to who doesn’t have that knowledge…the scheme helps students to engage with the fun side of law which can sometimes appear quite boring”.

“A lot of effort and planning goes into each case and producing each legal opinion draft. The final result is very rewarding for Cardiff Law School, the programme and the parents”.

“We’ve got a great team and the diversity of its members gives us a well-rounded team. Our mentor, Luke Clements, is not only an expert in his area, but a great teacher, helping support our learning and development”.