Research Conference Review

conferenceOn 7th October 2014 Cerebra held its Annual Conference at the Royal Society of Medicine in London. The conference looked at different ways to solve the problems faced by families in accessing services and support for children with complex needs.

The key message for the Conference was to look at practicable ways forward for service users to access services, as continual evidence and research shows that people face constant difficulties with this. Cerebra’s aim is not to make changes to the law but to look at ways of ensuring that service providers implement the law as it stands. Hopefully delegates feel that they enhanced their knowledge and understanding by attending our Conference.

With the exceptionally high calibre of speakers and the variety of topics covered the content proved to be informative to both professionals and parents/carers alike. All of the speeches were videoed on the day and will be available on our website soon.

The first section of the programme was entitled ‘Common problems faced by families of disabled children’. This part looked at the research that is being conducted by Cerebra’s Academic Chairs relating to studies into the experiences encountered by families in challenging services, the impact of socio-economic influences on disabled families and looking at the responses and strategies in meeting the needs of children with severe intellectual disabilities. The speakers included:

Professor Chris Oliver (Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Dr Janet Read and Dr Clare Blackburn (Warwick Medical School)

Alison Thompson, a parent, who gave a powerful and very moving speech relating to her experiences of dealing with different service providers as a mother of child diagnosed with ADHD. You can read her presentation here.

After an amazing lunch, the second section of the programme related to ‘Moving Forward’. Here Cerebra was extremely lucky to secure as speakers:

Dr Maggie Atkinson, the Children’s Commissioner for England whose speech was aptly titled ‘We want to help people see things our way’. After having spoken to numerous disabled children, she urged the audience of the need to look past their disabilities and see them as wanting to be treated as every other teenager.

Nigel Ellis, Executive Director, Local Government Ombudsmen. He gave the audience examples of complaints that had been made to him that related to the failure of local authorities to provide children with the necessary services, of which education made up the largest area of complaints.

The final section of the day ‘Problem Solving’ comprised of talks given by:

Polly Sweeney who is an Associate Solicitor at Irwin Mitchell. She gave an in depth look at Part 3 of the Children and Families Act 2014

Professor Luke Clements who is the key force in Cerebra’s Legal Entitlements Research Project. He discussed at length the focus of this project and relayed to the audience some of the legal opinions that had been produced in a Digest of Opinions that related to CAMHS, school transport and NHS services

At the end of each of the three sections conference chair, and Head of Cerebra Trustees, Professor David Rose fielded questions from the delegates which gave them the opportunity to clarify matters arising from the speeches. These questions were answered in detail and made some very complex issues clearly understandable and produced some thought provoking answers.

In addition to the talks, there were a number of exhibitors at the event who included Irwin Mitchell Solicitors, Autistica, Firefly and Wizzybugs.

Along with these there were information stands from our Academic Chairs at: University of Barcelona, University of Birmingham, University of Cardiff, University of Leeds, University of Exeter, Cerebra Innovation Centre.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day.  We are particularly grateful to have received sponsorship from the Big Lottery Fund and Irwin Mitchell Solicitors – their support made the conference possible.

Next year’s conference has been booked for Thursday 3rd December 2015 and will be at the Royal Society of Medicine again. Further details about this event will be forthcoming shortly.

Product Review: Safe and Sound Travel Pod

Safe and Sound Travel Pod

Safe and Sound Travel Pod

CIC bring you a review of the Creative Care Limited Safe and Sound Travel Pod, a portable safe sleeping area.

Over the years CIC have been asked many times for a solution to safe sleeping whilst travelling. Secure sleeping areas are readily available for permanent fixtures, and we have tried a few times to make something that would allow easy travel, perhaps sleeping over at Grandma’s house, going on holiday etc. But we have never succeeded in anything structurally sound enough that we would be happy to release. So when we came across the fantastic Creative Care Limited and their Safe and Sound Travel Pod we were over the moon that we can now direct people to the perfect solution to this problem!

Not only are Creative Care Limited a great, friendly and ethical company, they have an amazing product, beautifully made from quality materials and it is the best priced unit on the market. By designing and manufacturing in-house, and cutting out the middle men, Creative Care Limited are able to bring you this product for the best price possible.

travel-pod-car

It gets better: The Safe and Sound Travel Pod has also been designed by former aircraft engineer Tom, to be the smallest and most portable unit available! The unit weights 25kg in total and has been cleverly engineered to fold into 2 bags, both of which will fit width ways between the wheel arches of an average car – this was a vital criteria for Tom, as the unit is portable. Using an innovative camp bed arrangement they have also removed the bulky mattress which increases portability.

Some of the results of using the Creative Care Limited bed ranges are outstanding. Some children have been clinically proven to be able to reduce their sleep medication, and others have stopped using it completely and are getting their best night’s sleep in their lives – and so are their parents!!

The enclosures are shown to be so comfortable and comforting that kids are making the choice themselves to sleep inside to get some rest and get away from the bustle of family life for a bit of “me- time”.

A sale or return scheme is also available for those who would like a demonstration of the pods before purchase, with the only cost being for the postage.

Please feel free to visit: http://www.creativecareltd.co.uk/support/useful-contacts/ or call the Creative Care Limited team on 07585667248 or 07731793687 for more information and current pricing.

Books on Behaviour in our library

library-booksThis month we bring you a list of the books in our library covering behaviour.

For kids:

  • C0151 – Dont Behave Like You Live in a Cave

Advice for parents:

  • L6377 – Power Parenting for Children with ADD/ADHD: a practical guide for managing difficult behaviours
  • L6350 and L6286 – The Explosive Child: a new approach for understanding and parenting easily frustrated chronically inflexible children
  • L6420 and L6450 – Calm Your Hyperactive Child: coping with ADHD and other behavioural problems
  • L6416 and L6530 – Help Your Child or Teen Get Back on Track: what parents and professionals can do for childhood emotional and behaviour problems
  • L6364 and L6296 – No Fighting No Biting No Screaming: how to make behaving positively possible for people with autism and other developmental disabilities
  • L6031 – Achieving Best Behaviour for Children with Developmental Disabilities
  • L1611 – Bringing Up a Challenging Child at Home
  • L6460 – Children with Social Emotional and Behaviour Difficulties and Communication Problems: there is always a reason
  • L6180 – Encouraging Appropriate Behaviour for Children on the Autism Spectrum
  • L1610 – Communication-Based Intervention for Problem Behaviour
  • L1664 – The Good The Bad and The Irritating: a practical approach for parents of children who are attention seeking

Especially in class:

  • L6551 – Including Children With Attention and Behaviour Difficulties in the Foundation Stage
  • L1532 and L1608 – A Practical Guide to Solving Pre-school Behaviour Problems
  • L6188 – Getting the Buggars to Behave: advice on behaviour management in the classroom

Anger for children:

  • C0157 – A Volcano in my Tummy: helping children to handle anger
  • C0131 – Exploring Anger with Your Child
  • C0176 – The Red Beast: controlling anger in children with Aspergers Syndrome

Anger for parents:

  • L6421 – Exploring Anger: cognitive behaviour therapy to manage anger
  • L6526 – The Anger Box: sensory turmoil and pain in autism
  • L6437 – Anger Management: session plans using strength based solutions

Anxiety:

  • C0212 – The Panicosaurus: managing anxiety in children including those with Asperger Syndrome
  • L6241 – Helping Your Anxious Child
  • L6422 – Exploring Feelings: cognitive behaviour to manage anxiety

Pairing yourself with a child with a neurological condition

pairing-bellaSleep Practitioner Bethan Roberts gives advice on pairing yourself with a child to help deal with problem behaviour.

Pairing is the process of creating an enjoyable and reinforcing relationship between the child/young person and a given situation/person. Pairing is a very important place to start when trying to create behavioural change, by pairing yourself (as a parent/carer/professional etc) with positive reinforcement, so that you become the reinforcer rather than just the giver of reinforcement, can help achieve behavioural change and enable children feel safer in unknown/unpreferred situations.

Social situations

Every child and young person has the right to be a valued part of their society. The level of involvement is very individual however.  Many adults that children and young people come into contact with have an expectation that children will seek social reinforcement naturally. However many do not and therefore need to learn and experience that these situations can be reinforcing. If we think about school as an example, is there a lesson or activity they’re struggling with? Try to establish what the specific problem is, for example is the sheer length of the assembly and expectation for ‘appropriate behaviour’ too much to be achieved right now? Is there a compromise to be made? Could the time spent in assembly be limited to 5 minutes and increased as tolerance is developed. This would ensure that the young person has access to high value reinforcement in exchange for the desired behaviour for example a magazine in exchange for remaining in assembly and not screaming.

pairing-poppyDay to day activities

Doctor appointments, supermarket shopping, day trips, play dates, going to the bank, dentist – the list is endless and somewhat overlooked sometimes by those who’ve never experienced a meltdown due to unforeseen cues at supermarket checkouts, or the smell of the dentists surgery. But when is this activity necessary? It’s quite common for children and young people to dislike attending appointments with the above professionals, but unfortunately somewhat necessary, and therefore something that could benefit from being worked on. Practice when success is not vital. Would your doctor/dentist be willing to see your child weekly (short term) for 5 mins to work on pairing with reinforcement? Could you call into the supermarket when you don’t need to buy anything, spend two minutes walking up an aisle and then out?

Deciding where to start when tackling these issues can be tricky. There are things that we could begin to deal with today and some that are best left to a later date. Below are a few points to consider:

  • What kind of benefit will they/the family get from this i.e. going on holiday vs supermarket shopping?
  • Is it essential that they are able do this right now i.e. attend a doctor appointment vs attending the school disco?
  • Be mindful of any additional demands that may be inadvertently placed on the child i.e. being quiet, sitting still
  • Try and have a bag of tricks with you. If they are sensitive to noise, could headphones or ear defenders be useful. Keep some high level reinforcement handy that you will only produce when demand levels are very high, these can be produced in exchange for desirable behaviour (perhaps teamed with verbal praise to reinforce what they’re doing)
  • Understanding why the undesirable behaviours happen can help to change them

Work with other agencies such as school, doctors surgery, youth groups, supermarket staff, etc to ensure success there too. It has been my experience that often (not always) people that you come into contact during these times can be important in achieving success. Very often, by sharing with them a little information about your child and what you’re are trying to achieve can help foster an environment of understanding and positivity. Don’t forget, safety is always the most important thing to consider. Never be afraid of admitting things aren’t going to plan. You can always abandon the plan and start again another day!

Minimising the effects of additional learning needs: Part 2

education4The second in a four part series discussing parents’ common worries about education with special or additional needs.

Much is written about systems for identifying and meeting the educational needs of children with the most severe disabilities and learning difficulties, particularly at the moment information about the new system in England.  However, many more children have additional / special educational needs without being at the greatest / most complex level calling for a Statement, Education Health and Care Plan (new, in England) or Co-ordinated Support plan (in Scotland).  This is the second in a series of four articles about the support for this larger group of children. Each article deals with a common worry parents have about their child’s education when they have special or additional needs.

Q.  What can I do if I am told that my child does not have a diagnosed condition, or that the condition is not recognised, therefore (s)he does not have additional needs – (s)he’s just naughty / lazy?

A.  As in the article about meeting children’s needs in school, this touches on the question of “significance”, while also relating to education law.  To take the England guidance as an example – please consult the code for your area of the UK – “A child or young person has a special educational need if they have a learning difficulty or disability which calls for special educational provision to be made for him or her.”  (Dept for Education England 2014 Social Care, and others).

“Children have a learning difficulty if they:
a) have a significantly greater difficulty in learning than the majority of children of the same age; or
(b) have a disability which prevents or hinders them from making use of educational facilities of a kind generally provided for children of the same age in schools within the area of the local education authority)”.

Disability is defined in two ways:

“A child is disabled if he is blind, deaf or dumb or suffers from a mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be prescribed.” (Children Act 1989); or “A person has a disability for the purposes of this Act if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to day activities.”  (Disability Discrimination Act 1995, later Equality Act 2010).

Therefore, if a child needs educational support in relation to any of these definitions, (s)he has a special educational need, regardless of what might be causing it (except that difficulties with learning relating to speaking a different language are dealt with separately).  This need might be short-term, long-term or sporadic.

Other legislation also affects these definitions.  For example the code in Scotland, reflecting the Education (Additional Support for Learning) Act 1989, states for most children:  “A child or young person has additional support needs for the purposes of this Act where, for whatever reason, the child or young person is, or is likely to be, unable without the provision of additional support to benefit from school education provided or to be provided for the child or young person.”  Definitions in Northern Ireland are affected by the Disabled Persons (NI) Act 1989.  In terms of wider learning support, section 1.8 of the code for Northern Ireland describes the five-stage approach to identification which is expected to be used.  The practical actions to be taken under this approach, by teachers and SENCOs, start at section 2.45 of the Code, for example finding different learning strategies for the child, as elsewhere.

References

Code of practice on the identification and assessment of special educational needs, and supplement (1998-2005), (Dept of Education, Northern Ireland).

Dept for Education (2014 England, Social Care), Social care: guide to the 0 to 25 SEND code of practice: Advice for social care practitioners and commissioners.

SEND code of practice: 0 to 25 years (2014), (Dept for Education and Dept of Health, England).

Special educational needs code of practice for Wales (2004), (Welsh Assembly Government).

Supporting children’s learning (2010, revised edition), Scottish Government.

Singing to your baby

baby-listening
We take a look at lullabies and singing to infants. Is it an old-fashioned idea worth keeping?

Singing to babies and infants is something that comes naturally to many parents, grandparents and carers, and has carried on through many generations and cultures. Other parents might also want to adopt it as a deliberate routine for an infant who is different in their capacity to enjoy things or respond. A good start – babies can already hear their mother’s voice before they are born (Brezinka C., 1997).

Why not just talk?

Singing bestows added effects, such as:

  • Association and memory, for example a reinforcing effect from hearing familiar tunes, or learning to associate a lullaby with bed-time.
  • Another way of communicating with an infant, and a comforting way of hearing a parent’s or carer’s voice.
  • Engaging patterns of brain processing that are slightly different from processing speech (Ozdemir E., 2006).
  • Something that could extend into a form of communicative play, and into the infant actively making music. This could turn out to be a way they like to express themselves, add to other activities, and share with other children.
  • Entertainment that can stimulate or relax, as a background to other activities.

Why not just play a recording?

Again, singing as well adds elements, such as:

  • Obviously, the communication and relationship occurring between you.
  • Availability and ease of use of shorter, simpler and perhaps gentler bits of music.
  • Possibly, a quick way of lightening things up or providing a distraction.

Having said this, recordings and instrumental music have their uses as well, including for deaf infants who can pick up the rhythms / vibrations of the music. They may also sense you singing if you hold them close to you.

But I can’t sing!

mum-and-babyProbably you can, but some people have difficulty with singing the right note. Try pitching your voice by starting where you are, so if you want to sing a note but the pitch of your voice is not what you want, slide the note up or down to where you want it. With repetition, this should enable you to find the desired pitch more easily. There is a step-by-step ear-and pitch-training video at: http://your-personal-singing-guide.com/ear-training.html (Aaron Matthew Lim). Go on into a tune. If this is difficult, try songs that have the notes close together to start with, such as “Row, row, row your boat” or “Frère Jacques”.

Their singing voice is something that many people are rather sensitive about, so if a baby or infant does not seem to have a positive reaction, or any reaction at all, a parent may be easily put off. However the reason is more likely to be something different. For example, below a developmental age of about one year, it may not yet be possible to copy sounds, show a physical response to music, or use music as a “language” (cf. Center for Parent Information and Resources, Developmental Milestones, US Dept. of Education, 2010/2014). A lack of response may not be the same thing as a lack of impact. As time goes on you may see what calms or stimulates them (cf. UK National Children’s Bureau, Early Support, Information about behaviour).

Resources

For songs to sing, searching on “lullabies”, “nursery rhymes” or “nursery songs” will locate plenty of material, such ashttps://www.youtube.com/watch?v=MtYnT0786SQ, or http://www.babycentre.co.uk/lullaby-lyrics.

The Center on the Social and Emotional Foundations for Early Learning publishes suggestions for activities, including musical ones, to go with children’s books and other resources. The ideas could be used on their own or with different books (Vanderbilt University).

Technical informationlullabies

What are discussed in this article are really softer issues like enjoyment between parents / carers and infants. It has to be said that a number of research studies looking for specific technical benefits of music with infants have not found anything. Among those that have done so, though is Arnon S. et al. 2014, Maternal singing during kangaroo care etc.,  (Acta Pediatrica, doi:10.1111/apa.12744).

“Voices” is a journal containing other research articles about singing for and with children, from different parts of the world.

“Imagine” is an annual online magazine about early childhood music therapy. Therapists attempt to support motor development, breathing and skills such as communication for children with special needs.

Why Music Education? is an evidence-based discussion of ways in which music can contribute to children’s education and development, by the (US) National Association for Music Education (2007).

Further references:Brezinka C. et al. 1997, The foetus and noise. Gynakol Geburtschilfliche Rundsch 1997;37(3):119-29 [translated abstract, PMID 9483870].

Ozdemir E. et al. 2006, Shared and distinct neural correlates of singing and speaking. NeuroImage 33 (2006) 628–635.

PenCRU Family Fun Day

The Peninsula Cerebra Research Unit for Childhood Disability Research hold family fun day at Pennywell Farm in Devon.

The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) recently held their annual family fun day at Pennywell Farm in Devon.

The event was organised in order to thank the unit’s Family Faculty which is made up of all the families who have been involved in the research that the unit carries out. The day was a huge success and PenCRU wanted to thank everyone who took part, especially the unit’s very own Chris Morris.

Chris “volunteered” to take part in a cream pie challenge which saw many of the children who were in attendance queue up to make sure he was well and truly covered in pie! The staff at PenCRU even made sure there was video evidence of the challenge which can be seen below. It was all for a good cause however with Chris choosing to donate sponsorship raised through the challenge to Cerebra and our work.

The PenCRU unit aims to carry out research that is relevant to families with disabled children and is there to respond to questions from families about therapies and health services for all children and young people affected by disability.

Accessing Services: The View From a Parent

Alison Thompson

Alison Thompson

Alison Thompson is an author, speaker and mum to Daniel, who was diagnosed with ADHD when he was six. This is her heartfelt account of the troubles she has faced when trying to access services for Daniel.
My son Daniel was diagnosed with Attention Deficit Hyperactivity Disorder when he was six, but I’d known there was something wrong long before that. He was a fretful and anxious baby who rarely slept, and as a toddler he was constantly on the go. We went to a local parent and toddler group and he was the child you’ve all seen, running round the room knocking over the other children’s Lego towers, climbing the shelves to get what he wanted from the top, throwing paint on the floor causing chaos. At story time I had to wrestle him to the floor to get him to sit still, and even then he’d be calling things out and distracting the rest of the group.

Daniel was a caring, funny, quirky little boy, with a charming smile and a wicked sense of humour – though he had some strange obsessions. He had a purple teddy bear called Strum who went everywhere with him, and Daniel could not get to sleep if Strum wasn’t there. One day we left Strum behind at a motorway service station and I did a sixty mile round trip to retrieve him, because I knew what a nightmare bedtime would be without him! For a while Daniel was also obsessed with Only Fools and Horses. He could recite some of the episodes word for word – which was fine until the day he told a friend to “Shut up, you tart!” I was mortified.

Daniel Thompson

Daniel Thompson

But there was a darker side to Daniel too. He couldn’t concentrate on anything for very long and he seemed to drift off into his own little world at times. At meal times I’d have to remind him he was meant to be eating as his fork would stop halfway between the plate and his mouth, and in the mornings I’d leave him to get dressed and come back to find him in his room, one leg in and one leg out of his trousers because some toy or game had caught his attention. But the worst thing was the tantrums. Like Jekyll and Hyde, the smallest thing would set him off and he would turn into a mini Incredible Hulk, lashing out at anyone or anything that got in his way. He’d have several meltdowns a day and they could last for hours. Our home was full of holes in the walls and my daughter and I were constantly covered in bruises.

Daniel started at nursery but he didn’t seem to fit in with the other children, somehow he wasn’t in sync with them, and his domineering personality caused problems. At the end of the year, the teacher recommended I see my doctor because she felt there was more going on than normal toddler tantrums, and I agreed. The GP referred us to a paediatrician who said Daniel was “borderline ADHD” – which meant nothing, really.

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Edinburgh Woollen Mill Fashion Show

IMGP6723 mainEdinburgh Woollen Mill host a fashion show for the charity – with Cerebra staff as the models!

The people of Carmarthen were treated to a fashion show by the town’s Edinburgh Woollen Mill store on 7th October.

The evening was coordinated by the store’s manager Tracey Moore and Cerebra Community Fundraising Officer Allyson Silverthorne and treated eager observers to a preview of EWM’s autumn collection of clothing.

Several members of Cerebra staff took part in the event, strutting their stuff on the catwalk along with staff from EWM. Each budding model had three outfits to show off ranging from smart to casual and Allyson even got to wear clothes from the new Christmas range.

As well as having entertainment for the evening, guests were also treated to cakes and a raffle, prizes for which were generously donated.

Allyson said: “I would like to say a big thank you to everyone who attended on the day and to everyone who helped to organise the event. We raised £88 for Cerebra and also helped to raise awareness of our charity. A big thank you to Father Pious who allowed us to use St Mary’s Church Hall.”

Nursery Children Become Super Fundraisers

elliott bennett chequeChildren and staff at nursery in Dorset dress up to raise money for Cerebra.

We would like to say a big thank you to staff, parents and children at Scallywags Nursery in Dorset for raising a fantastic £270 for Cerebra.

The children at the nursery had a great time dressing as superheroes and princesses to raise the funds for us.

The cheque was collected by Cerebra Ambassador Chris Bennett whose son Elliott attends the nursery.

Chris is extremely proud of Elliott, who has cerebral palsy.

He said: “We don’t know how much cerebral palsy will affect Elliott’s life, I found it very hard to come to terms with Elliott’s diagnosis but he is working so hard and making his own special journey in life.”