Author Archives: Sarah Jones

Supporter wins £1500

Myra with her chequeAnother Cerebra supporter has won £1500 in our Count Me In lottery!

Myra, from Berkshire, is one of our latest supporters to be crowned a winner in our Count Me In lottery.

The Cerebra Count Me In lottery is an easy way to donate to the charity, allowing our supporters to give regular, simple donations to help children with neurological conditions across the UK – whether it’s funding vital research or paying towards direct intervention.

Every week a winner is chosen at random from our lottery members, receiving a prize of £1500.

Myra generously gave back a portion of her winnings, telling us: “It’s only right you should share in my good fortune.”

Everyone at Cerebra congratulates Myra, and all our other winners, and says a big thank you for the continued support.

If you’d like to be counted in follow this link to read more about our lottery and how to join. Make a positive difference today!

Bedtime Resistance

father and sleeping babyIf you are having difficulty getting your child to settle at bedtime, our useful checklist may help.

Difficulty in getting your child to settle at bedtime or bedtime resistance is common. Have you considered, or are you already doing the following?

  • Turning the tv off an hour before bed?
  • Is the bed Comfortable?
  • Is the Temperature adequate? (advisable is 19 degrees)
  • Is the bedroom dark and if not, do you have a black out blind?
  • Do you have a set bedtime Routine that lasts between 30 minutes and an hour?
  • Are you starting your routine at the same time every night, including weekends?
  • Is your child going to bed at the same time every night, including weekends?
  • Is your child being woken up at the same time every morning, including weekends?
  • Is the bedroom minimal in terms of toys/other distraction?
  • Do you refrain from using the bedroom for punishment?
  • Does your child have a healthy snack before bed?
  • Does your child have a bath before bed? (If they find it calming)
  • Do you put your child to bed when there are signs of them being tired?
  • Are you keeping interaction with your child to a minimum once they go to bed?
  • Is your child getting enough exercise in the day?
  • Is your child eating healthily?
  • If your child becomes anxious or upset when brushing their teeth, have you tried doing it earlier in the bedtime routine?
  • Is your child having no caffeine near to bedtime?
  • Have you stopped or reduced naps, especially near to bedtime?
Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Diane’s Offa’s Dyke Walk

Diane during her Offa's Dyke WalkCerebra supporter Diane took on a 177 mile walk to raise money for children with neurological conditions.

Diane’s little boy, Matthew, was born with an extremely low platelet count which, she was told, meant that he would suffer brain damage. Fortunately, a scan after his birth showed that there were no signs and, after two platelet transfusions, he was perfectly healthy.

Realising how lucky they had been, Diane decided to raise money for a charity for children who live with brain injuries and neurological conditions.

Her first fundraising venture saw her take to the Cotswold Way – a 102 mile walk that she finished with her daughter Louise, raising nearly £600. The following year Diane put on a concert with her pupils and managed to raise over £100.

After also taking on the Ridgeway Walk with her daughter, Diane stepped up to the Offa’s Dyke path – a 177 mile trek over the Clwydian Hills and the Black mountains with the support of Matthew and her husband, Martin.

“We love the views and the countryside and the fresh air,” Diane told us. “Even if it is a struggle to get a teenage daughter out of bed on a school holiday!”

Diane and Louise completed the first leg of their journey – 90 miles over the Easter holidays from Prestatyn southwards. They finished off the last 80 miles on Saturday the 31st of May, met by Cerebra’s Sarah Robey at the Sedbury Cliffs.

“Every day must feel like climbing a mountain for those families who struggle with a brain damaged child,” said Diane.

Sophie’s Bouncer

Sophie in her bouncerThe Cerebra Innovation Centre (CIC) have recently made a bouncer for a young lady called Sophie.

The bouncer allows Sophie to stand unaided and to bounce and play without her mum, Mimi, holding her. Mimi wrote these kind words:

“Thank you for your work! I was very glad to receive the bouncer. I set it up following the instructions and it works very well. I haven’t seen my daughter’s smile for long time. This is a relief for our stressed life!”

We have one spare bouncer, if you think it would be useful for your child, please drop us a line for more details at cic@cererba.org.uk.

Communication and children with neurological conditions

communicationIn the first of a new series of articles on dealing with problem behaviour in children with neurological conditions, Cerebra Sleep Practitioner Bethan Roberts gives advice on improving  communication.

There are many reasons that negative/problem behaviours occur in children with neurological conditions (and indeed with those who are neurotypically developing). Here I am going to talk about communication and the importance of Functional Communication in reducing frustration and other negative behaviours and increasing interaction and language acquisition.

Communication begins as soon as we are born, for example, a cry to indicate we are too warm, hungry or tired. As parents and carers we tend to learn pretty fast what each cry means and then act upon them, thus increasing the likelihood that this specific behaviour will happen again. This is called positive reinforcement (something to remember is that it’s only positive reinforcement if it does increase the occurrence of a behaviour).

It may seem the simplest thing in the world to be able to express a need that is not being met, for it then to be consequently met. However when this does or cannot happen it can be an incredibly frustrating place to be. Have you ever found yourself in a situation perhaps on holiday where you need something and the person who can give it to you does not speak the same language? A lot of people do not ‘naturally’ come to utilise speech, sign etc and there are many that, due to certain conditions simply cannot. So we would look at using whatever means of communication that’s available/simplest i.e sign, pecs, speech, augmentative devices, pointing, vocal sounds, written word.

As a starting point for introducing functional communication I think we need to break down what we mean. By functional, we mean the impact of that behaviour/communication. What is the purpose of  the behaviour/communication? Does the intended communication produce some change in the persons environment making it more reinforcing? For example, it’s a hot summer day, a child asks for an ice cream, they get an ice cream. This behaviour is likely to be strengthened (reinforced) by receiving an ice cream therefore making it more likely that asking for an ice cream will occur in future. The negative (and very common) alternative can sometimes look like this. It’s a hot summer day, a child wants an ice cream, the child has little/no functional communication skills so they scream and cry until someone figures out what they want, and they get the ice cream. This behaviour is likely to be strengthened (reinforced) by receiving the ice cream therefore making it more likely that screaming and crying will occur in the future. Both scenarios may have the same outcome, but the latter probably took a great deal longer and involved much more stress and upset.

So as a starting point, look at a reasonable way for your child/young person to begin communicating. Once this has been chosen, create a list of their preferred activities/toys/food/people (get creative) and find as many opportunities for asking to occur in a sitting. At first you will have to prompt quite a lot (taking their hands and creating the sign, saying the word for them to repeat, taking their hand to the correct pecs symbol etc). Break things down, if it’s a favourite movie give them 30 seconds and then pause, presenting the opportunity to request again. If it’s a tangerine, give one segment at a time. When on the swings, give two pushes then stop. Fairly soon, children and young people will begin to learn that if they ask, they very often get.  It’s important to remember that what we find reinforcing can change moment to moment, it’s tricky to teach people to ask for something they don’t particularly want, if you’re asking someone to make a big effort with a new skill, the reward (reinforcement) has to be worth it.

Autism at school: seven questions for parents

autismatschools2We are pleased to share a short article written for parents by Prof Richard Hastings (Cerebra Chair of Family Research at Warwick University) about autism and school.

The article is an attempt by Richard to make more accessible the sorts of questions that are important when considering whether school based interventions/supports are suitable for children and young people with SEN, autism and intellectual disability.

Richard suggests that the questions parents should ask are:

  • What are the needs of my child and my family at this time?
  • How will the intervention suggested address these needs?
  • How is the intervention meant to work?
  • Has the intervention been fully described and written down?
  • Is there evidence the intervention is effective?
  • Is there any evidence the intervention is effective in the real world?
  • Will the school be able to show you whether the intervention is working for your child?

To read the article please click here.

We would add one further question to the seven suggested by Richard and that concerns information sharing and communication between the school and other agencies (health, social care) that may be involved in the child/young person’s overall support.  Its important that the overall package of support ‘fits’ together.  So parents need to question this and how communication between the school and these other agencies is going to be managed.

Additionally you might like to look at the ‘What’s the Evidence’ summaries written by another Cerebra centre, PenCRU, and also Cerebra’s Guide on Decision making, Confidentiality and Sharing Information. 

Assistive Technology

Fassistive-techrom shoelaces to cybernetics: the world of assistive and alternative technology for children.

Assistive technology (AT) is a term that can be applied to anything, whether it is a high-tech device or an everyday item used in a particular way, that enables someone with a disability to access and participate more fully, help them to do more, in aspects of life (as in home, school, community).

A search for something to assist a child will probably turn up some closely related fields as well:

  • Augmentative and Alternative Communication (AAC), which includes not only devices such as picture and symbol cards and boards but also, in its widest definition, sign languages that assist or replace expression and speech; Telecare, Telemedicine or Telehealth, involving technology to provide assistance and services remotely (e.g. www.sctt.scot.nhs.uk/programmes/health/paedriatrics/);
  • Wearable Technology, which monitors (probably best known for its use in sports training) and/or regulates or treats, often based on electronic sensors;
  • and an up-and-coming concept of “Welfare Technology”, which aims to improve quality of life and/or treatment procedures using techniques such as robotics or software. (Two projects that illustrate what Welfare Technology is are at the University of Southern Denmark and at Heriot-Watt University, Edinburgh)

So how to decide whether to search out or invent an item of AT and alight on what is needed for a child? Communication is one of the first and most important skills an infant needs to start practising, so those needing extra help to communicate may well be introduced to sign languages and other AAC mechanisms by parents and speech therapists, before they reach school age, alongside therapeutic and educational communication techniques.

Many ideas that come naturally in caring for a child and teaching them skills, at home and elsewhere, could come under the heading of “AT” without having the label on them. An occupational therapist might also be involved in making recommendations for an assistive device.

Once at school, anything that is used especially to minimise extra challenges so that a child is able to do what others are doing in the classroom (e.g. an AAC device, a computer / software / special keyboard, or even a special pen or a chart serving as a memory aid) could be categorised as AT.

Potentially it goes beyond the obvious areas of mobility, self-care, communication, vision and hearing, reading, writing and arithmetic to things like aids to completing tasks, thinking / cognitive processing, organising, interacting or concentrating. The teachers, school SENCO, therapists, local authority schools advisors, and the local Communication Aids Service could potentially lend their expertise to it. Other approaches may have been tried, before exploring more formal ways of introducing extra help. The child may have a plan set up that includes educational goals, like an IEP (Individual Education Plan), Statement of SEN, Education Health and Care Plan or Record of Needs, which would bring in some necessary liaison with parents about what the child needs to be able to do at home and at school, and what approaches are taken to that.

A plan also provides a mechanism for regularly reviewing how the AT is functioning as a help to the child and whether something else needs to be considered as time goes on. Specifics within the plan and the reviewing mechanism could include the solutions to questions like; what do they need to be able to do (or do more easily)? What are the criteria for deciding whether the identified need is being met? How is the device being tried, where (e.g. at home as well) and how long for? What follow-up is there, e.g. how is it determined whether the technology is / is not contributing to meeting the need? (e.g. samples of school work, observations, progress reports). If it doesn’t appear to be effective, why might this be? What would the next step be? (e.g. further advice).

Depending on the circumstances, local authority or health services may fund assessment and equipment. If a family is thinking of buying an item privately or is otherwise able to source it, for example from a grant-making trust, one of the factors to think about is, would this be used in the classroom as well as at home? Sometimes there are reasons why a school might not want to use an item, but it could be expected that a child could make best use of AAC and AT if it is fully integrated into life.

In terms of children’s rights, a local authority assessment should take into account a need for assistive technology (cfCerebra’s Disabled Children Parents’ Guide: Social Care, Housing and Health). Arguably, it would be desirable for AT to be considered in a knowledgeable and creative way for any child with additional needs.

Devices designed for school tend to have a different emphasis and to be supplied by different companies from home devices, but the technology spans both environments. In turn, suppliers of home technology also tend to be concerned with supplying for home adaptations, e.g. under Disabled Facilities Grants or to social services / community equipment departments.

One way of seeing what is available and trying things out is to go to exhibitions. Suppliers in the UK market attend the big exhibitions such as Naidex, (this year at NEC Birmingham, 29 April – 1 May), and Kidz, (Disabled Living, next event coming up in June). Assistive technology also features in more general education exhibitions geared to teachers, but open to all, such as NASEN Live, (next event at the Reebok Stadium, Bolton, 21-22 May), and the TES special educational needs show held annually at the Business Design Centre in London.

At many of these, children (and, I suspect, parents) can have a good day trying everything out. If it is not practicable to visit, the exhibitions’ websites can still serve as starting points to look at the websites of the exhibiting suppliers that they list, where there is sometimes a treasure trove of information.

Resources

Companies like Inclusive Technology, supply schools with accessories and software to help children with additional needs to access learning.

A communication aid service is available in each area of the UK, listed by Communication Matters. They also have lists ofother AAC resources.

The Family Center on Technology and Disability provides a substantial amount of information on AT (please note, not from the UK so statements on aspects of law and procedure will be different).

Tips for using assistive technology with young children, http://tnt.asu.edu/files/March2010.pdf andhttp://tnt.asu.edu/files/June2010.pdf (Tots n Tech newsletter, Thomas Jefferson and Arizona State Universities). There is also a “webliography” of downloadable pictures that families and schools can use with children.

Techmatrix and Abledata are US databases of assistive technology products and what they can be used for,  and

Examples of technology / software designed to make learning more accessible,  (U.S. National Center on Accessible Instructional Materials)

Video-based training on the use of assistive technology from Vanderbilt University  and the Universities of North Carolina and Kentucky.

Assistive Technology: Strategies, Tools, Accommodations and Resources (ATSTAR), course designed for teachers (cost), (Knowbility)

A method for teaching a child to use a switch, (Linda Burkhart)

Assist UK (Disabled Living Centres) – a place to look for mobility / daily living aids.

Another happy winner!

Mr Wollaston and his chequeAnother happy supporter has won £1500 in Cerebra’s Count Me In lottery.

Mr Wollaston from Essex recently won the £1500 weekly prize in our Count Me In lottery. He told us “I haven’t decided yet what it’ll be spent on, but a holiday is high on the list!”

The lottery is easy to join and costs just £1.20 a week. Every week someone wins £1500. The money raised goes towards paying for direct, on-going support for families of children with neurological conditions and funding important research into causes, treatments and interventions.

If you’d like to learn more about our lottery click here or call 01267 244218. Count Yourself In and make a positive difference today!

Cerebra Perinatal Research Centre

father and sleeping babyWe take a look at how the Cerebra Perinatal Research Centre at Leeds University is making a difference in preventing neonatal brain injury and childhood disability.

For most mothers, awaiting the arrival of their baby is a safe and successful process, but we know that adverse outcomes can unexpectedly complicate one in five pregnancies. These outcomes include preterm (early, premature) birth, pre-eclampsia (high blood pressure), and low birthweight (growth restriction). Alone, or in combination, they may have serious consequences for the mother and/or her baby. Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to cerebral palsy).

Predicting which mothers are at risk and implementing preventive strategies would be ideal. However, identifying at-risk-mothers-to-be is difficult. To that extent, understanding of the underlying pathophysiology would enable targeted preventive solutions, but also lead to the generation of predictive tests and lead to successful change in the clinical setting.

Since 2007, and with the support of Cerebra, the Cerebra Perinatal Research Centre based at the University of Leeds has been engaged with identifying and disseminating effective and preventive strategies for adverse outcomes in pregnancy, through a research process that is outward-facing, collaborative, and transitional. They have established a research centre which has informed clinical practice, inspired multi-professional teaching and led to a reduction in one of the key adverse outcomes, preterm birth (over the period of Cerebra’s funding of the centre, this work has led to a fall in premature birth rates, with almost 350 fewer babies each year being born too soon).

The Cerebra Perinatal Research Centre conducts a varied programme of research that aims to prevent neonatal brain injury and childhood disability. The main focuses of the centre are four interrelated research themes that are summarised below.

1. Fetomaternal interface: Characterising normal and abnormal placental structure and function.
A healthy placenta is the key to an uncomplicated pregnancy, but our understanding of its structure and function remains limited. Each placenta reflects the environment its baby shared and, as such, has the potential to shed light on the causes of adverse pregnancy outcome. At present assessment of placental structure is confined to microscopic inspection. This yields a large amount of descriptive and qualitative information, but is limited in its ability to quantify abnormalities seen. By implementing innovative technology, researchers at the Cerebra Perinatal Research Centre have pushed these boundaries. Full thickness placental sections are stained, scanned and later reconstructed digitally. This allows targeted, large areas of the placenta to be surveyed with a view to make more accurate assessments. Furthermore, by using this digital platform the group is also able to capture sequential sections of the placenta tissue, virtually reassemble them and establish a 3D image, thus undertaking a comprehensive analysis of healthy and diseased placenta and compare for structural anomalies.

2. Early circulatory markers of pregnancy complications: Developing predictive strategies
The ability to predict at an early stage of pregnancy which expectant mothers would encounter complications later would allow intervention and preventing them from occurring. Such discovery research would also reveal new avenues for future exploration and enhance understanding of the mechanisms of both pregnancy complications and brain injury. To that extent the Leeds team is part of a worldwide collaboration: the Screening for Pregnancy Endpoints (SCOPE) biobank, which took over five years to complete. The wealth and depth of this biobank has been realised through over 100 SCOPE consortium-approved studies and has already led to 30 peer-reviewed publications. Most importantly it has led to the identification of PIGF (placental growth factor) as being the most important biomarker in the prediction of pre-eclampsia (high blood pressure during pregnancy). The group will continue to examine the role of potential biomarkers focusing on cell-free nucleic acids (microRNA and DNA) as markers of disease, due to their relative stability compared to many proteins. To that extent the centre has initiated the creation of a further local biobank the 1000 Women Study (an NIHR portfolio study) which will be used both in terms of establishing novel predictive tests, but also evaluate the reliability of those proposed elsewhere.

3. Maternal, fetal and neonatal immune function: Control, modulation and prevention of postnatal brain injury
The group has long had an interest in the role of immune system dysfunctions in the onset of major adverse pregnancy outcomes and the relationship between this and subsequent neonatal brain injury. Their focus has been on the major groups of cells involved in maternal immune defence, particularly macrophages, as it is becoming clear that these respond and behave differently in the mother and her baby, that they have different consequences dependent on their location, and that they were amenable to modulation. Researchers in the centre have developed and refined in vitro cell models to compare maternal and fetal/neonatal macrophage function. The group also carried out experiments to evaluate and characterise the effects these macrophages have on developing neurones, changes which may have long-lasting consequences. Scientists in the Cerebra Perinatal Research Centre hope that a better understanding of prenatal immune function, and how this evolves through advancing gestational age, birth and during early postnatal development, will also offer much needed insight into how brain development is affected by inflammation, and the ways in which the maternal, fetal and neonatal inflammatory/immune responses can be modulated and extrapolated to the clinical setting.

4. Systems biology: Towards the identification of novel therapeutic targets
The biological systems underlying pregnancy complications are complex, diverse and frequently interrelated. There are limitations of examining pathways and molecular interactions in isolation from each other, rather than considering the wider picture. To that extent the Cerebra Perinatal Research Centre is now implementing as systems biology approach to define the biological networks that characterise normal pregnancy and early neonatal life.

Supported by partnerships with Harvard Medical School and the newly established MRC-funded Medical Bioinformatics Centre recently awarded to the University of Leeds, the group has been able to create frameworks of interactions and identify key targets for novel therapeutic interventions (by applying mathematical formulas/algorithms and probability to represent complex biological functions).

Impact
The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Through collaborative, global, translational research they have made important advances in this aim, improving the prediction of mums at risk of early delivery and preventing it from happening, thus reducing the incidence and burden of brain injury acquired as a consequence of pregnancy complications.

To that extent, the centre’s research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability. Their work so far, focusing on preterm birth, has led to a sustained reduction in prematurity in Leeds and the expansion of the preterm prevention service at Leeds Teaching Hospitals Trust. They now have a tertiary service that runs two clinics each week for women at risk of preterm birth, and which receives referrals from all of Yorkshire and other centres within the North of England.

The group have always had several research students assisting on existing projects or initiating pilot studies. These include both undergraduate (BSc) and postgraduate (MD and PhD) students. It is these students that will ensure this work continues to influence practice and shape policy in the years ahead.

The next six years
Cerebra are delighted to be in a position to provide the core funding for the Cerebra Perinatal Research Centre at the University of Leeds for a further 6 years (between 2014 and 2019) to continue the innovative and translational work they do in the area of brain injury acquired through adverse pregnancy outcomes.

Books on Special Educational Needs

Library booksWe’re often asked for books or resources on special education. Here’s a list of titles we have on the SEN system, inclusion and special provision as well as those written for teachers and home schooling.

Special Educational Needs system

L6327 and L6383 – Choosing a School for a Child with Special Needs by Ruth Birnbaum
L6518 – The Journey Through Assessment: help for parents with special needs child by Antonia Chitty
L6341 – Surviving the Special Educational Needs System: how to be a velvet bulldozer by Sandy Row
L6322 – Guerilla Mum: surviving the special needs education jungle by Ellen Power
Inclusion
L6167 – Special Educational Needs a Parents’ Guide by Antonia Chitty
L6213 – Special Educational Needs Inclusion and Diversity by Norah Frederickson
L6370 – Key Issues in Special Educational Needs and Inclusion by Alan Hodkinson
L6342 – How To Reach and Teach All Students in the Inclusive Classroom by Sandra Rief
L6455 – Including Me: managing complex health needs in schools and early years settings by Jeanne Carlin
L6513 – How To Make School Make Sense: a parents’ guide to helping the child with Asperger Syndrome by Clare Lawrence
L1687 – Walk in Their Shoes: a day in the life of an spld student by Edwina Cole
L6033 – Meeting the Learning Needs of All Children: personalised learning in the primary school by Joan Dean

Special provision

L6501 – Personalised Learning for Young People with Profound and Multiple Learning Difficulties by Andrew Colley

Particularly for teachers

L6427 – A Practical Guide for Teachers of Students with Autism Spectrum Disorders in Secondary School Education by Debra Costley
L6412 – Transforming the Role of the SENCO: achieving the national award for sen co-ordination by Fiona Hallett

Home schooling

L6143 – Teaching at Home: a new approach to tutoring children with autism and Aspergers Syndrome by Olga Holland
L6430 – Autism and Flexischooling: a shared classroom and home schooling approach by Clare Lawrence