Wilkins Family Enjoy a Break at Cerebra’s Holiday Home

The Wilkins family recently enjoyed a lovely holiday together at Vallecchia, Cerebra’s holiday home in Pembrokeshire.

The family took full advantage of all the facilities that the adapted bungalow has to offer. According to mum Lesley, the sensory room and soft play area were particularly popular!

Lesley said: “Thanks to the Vallecchia house, Chloe and the whole family were able to have a holiday with much needed quality time together. The sensory room, soft play area and playroom were Chloe’s favourites! We had a lot of fun making great memories and relaxing. Thank you Cerebra! We really needed this break!”

You can find out more about Vallecchia including how you can apply for a free week here.

Chloe completing a Peppa Pig jigsaw

Chloe completing a Peppa Pig jigsaw

Survey finds local authorities failing to comply with their legal obligations to parent carers/young carers

A survey of over 40% of English social services authorities by the Cerebra Legal Entitlements Research Project at Cardiff Law School has found serious failing in local authority ‘short breaks’ statements that they are under a duty to publish.

Findings included:

  • Over 90% failed to advise parent carers and young carers of their right to an assessment;
  • More than 85% gave no clear explanation as to how the amount of support provided is decided;
  • In excess of 80% failed to explain what families could do if they were dissatisfied with the support they were receiving;
  • Over 60% failed to mention transport support – to enable the disabled child to attend the short break support;
  • In more than 50% of cases, it was difficult to locate the actual ‘short break statement’.

The report contains advice on how short breaks statements and local authority websites can be improved – particularly the value of having a logical point to start a search (such as a home page with an entry such as ‘social care’ or ‘carers’) and the need for a national standard ‘template’ for all authorities to use.

The report contains some positive findings and of the authorities surveyed, the report singled out the Isle of Wight as an example of best practice and gave ‘honourable mentions’ to Camden, Hampshire, Liverpool and Cheshire West and Chester.

The full report can be accessed at https://w3.cerebra.org.uk/help-and-information/legal-entitlements-research-project/

For further information, please contact:

Professor Luke Clements [who supervised the research] l.j.clements@leeds.ac.uk
Professor Julie Price [Head of the Pro Bono Unit, Cardiff] PriceJA1@cardiff.ac.uk
Tracy Elliot [Head of Research & Education at Cerebra] TracyE@cerebra.org.uk

Families Enjoy Cardigan Pantomime Trip

On 21st December 2015 Cerebra treated 55 lucky children and parents to an afternoon at the pantomime, organised by Regional Officer David Williams.

Families went to Theatr Mwldan in Cardigan to watch the production of Cinderalla.

As well as their admission tickets Cerebra provided free interval ice creams for everybody to help make sure they enjoyed their day!

Families came from as far afield as Neath and Milford Haven to enjoy the event and everyone had a good time with Cerebra families occupying a third of the auditorium and providing most of the audience participation! This was particularly pleasing as the weather was awful and one of the main roads to Cardigan was closed due to flooding.

Parents were very pleased with the day out with families saying: ‘our family all enjoyed a fantastic start to the Christmas holidays’ and ‘thank you for a wonderful day, it was well worth the journey’.

It was great to see everyone enjoying themselves and was a very enjoyable end to the year. David is looking forward to next year’s trip when hopefully another group of families can have a fun and relaxing day out at the Pantomime!

Collection Box Success for Carmarthen Store

Box Coordinator Melanie Clark gives Odette her certificate

Box Coordinator Melanie Clark gives Odette her certificate

A Carmarthen based local business has come up with a great way of raising funds using one of Cerebra’s collection boxes.

Odette Aubrey of Cards Are Us hosts one of our boxes on her counter and has decided to use it to collect all of the 5ps from when customers buy a carrier bag.

Odette said: “When customers buy a carrier bag we always put the 5p in Cerebra’s charity box and when they realise that it’s going to such a great charity, lots of people give all of their loose change. Our customers love the fact that 100% of the carrier bag charge goes to Cerebra.”

Cards Are Us have so far collected an impressive £149.86 for Cerebra – all from simply collecting 5 pence pieces!

Hosting one of our boxes is a great way to raise vital funds for children with brain related conditions but also helps to raise awareness of Cerebra.

You can find out more information about our collection boxes here or by contacting melaniec@cerebra.org.uk.

News – January 2016

A stack of newspapersOur monthly round-up of news, legislation and cautions relevant to families who have children with brain conditions.

Mental Health Investment
The Mental Health Services and Schools Link Pilots, in 22 areas of England, are to test proposed improvements to mental health services for children.  (Dept for Education).

Legislation

SI 2015/2005, The Civil Legal Aid (Merits Criteria and Information about Financial Resources) (Amendment) Regulations 2015
Amendments to the criteria for entitlement to legal aid.  Includes some issues affecting children and families.  Applies to England and Wales.

2015 No. 2041, The Council Tax Reduction Schemes (Prescribed Requirements) (England) (Amendment) Regulations 2015
From 14 January 2016, requires local authorities in England to arrange their new schemes.  These potentially have an impact on families where there is a child with special educational needs / disability.

2015 No. 428 (C. 56), The Welfare Funds (Scotland) Act 2015 (Commencement) Order 2015
From 1 February 2016 (for some parts) and 1 April 2016 (for the remainder), brings into force regulations and other parts of the Act that are not already in force.  The Act allows for emergency payments to individuals by local authorities, now that the Social Fund is not available.

2015 No. 444, The Victims’ Rights (Scotland) Regulations 2015 came into force in December 2015
An implementation of European Directive 2012/29/EU establishing minimum standards on the rights, support and protection of victims of crime.

2016 No. 21, The Adoption and Children (Scotland) Act 2007 (Amendment of the Children (Scotland) Act 1995) Order 2016
From 15 January 2016, changes to the regulations about court orders.

2015 No. 1989 (W. 299), The Partnership Arrangements (Wales) Regulations 2015
The regulations set out now local authorities and local health boards are to work in partnership for specified health and social services functions. To do this, they are to form seven regional partnership boards and share information with integrated family support teams.

2015 No. 1988 (W. 298), The Children (Secure Accommodation) (Wales) Regulations 2015
From 6 April 2016, requirements in relation to the placing of children into secure accommodation.

2015 No. 1843 (W. 271), The Care and Support (Charging) (Wales) Regulations 2015
From 6 April 2016, regulations relating to charges that local authorities can make towards care and support services for adults.

2015 No. 2006 (N.I. 1), The Welfare Reform (Northern Ireland) Order 2015
Adjusted rules for various welfare benefits and entitlements.  Partly in force already, partly expected to be in force on dates yet to be determined.  Works in conjunction with the Northern Ireland (Welfare Reform) Act 2015, of last November.

SR 2015/407, The Disabled Persons (Badges for Motor Vehicles) (Amendment) Regulations (Northern Ireland) 2015
Further amendments to the Disabled Persons (Badges for Motor Vehicles) Regulations (Northern Ireland) 1993.

2015 c. 10, The Children’s Services Co-operation Act (Northern Ireland) 2015
An Act mainly to require co-operation among certain public authorities and others towards the well-being of children and young people, and the adoption of a children and young persons strategy by the Executive.

Cautions

Newborn babies in cars
A hospital in Oregon watched about 300 parents of newborn babies as they put their baby in the car to go home.  They found that over 90% of parents made serious errors of positioning, and advise that parents learn how to do this beforehand.

Using steam to ease children’s colds
Surgeons have recommended not using this traditional method, after treating a number of children for burns sustained as a result.  They note that it is still sometimes recommended by people that parents would listen to.

Events – January 2016

EventsAll you need to know about personal budgets
A workshop for parents and carers of children and young people who have an Education, Health and Care (EHC) Plan.  Stockport, 22 February. (In Control, with the Seashell Trust).

Up Down Man
Production of a play by Brendan Murray, running at the Salisbury Playhouse from 24 February to 12 March 2016, about “the question that faces every parent of an adult with a learning disability…. What will happen if I’m not here?” 

Kidz to Adultz In the Middle
Additional needs resources and information, exhibition and event, Coventry, 10 March. (Disabled Living).

The Education Show
Event showcasing learning resources. NEC Birmingham, 17 – 19 March. (i2i).

British Library Family Programme
Information about free children’s events at the British Library, London.

Consultations – January 2016

We’ve rounded up some open consultations that may be of interest to parents and carers of children with brain conditions.

Keeping children safe in education: proposed changes
The Department for Education in England is consulting on proposed revisions to guidance for schools on keeping children safe.
Closing date: 16 February 2016.

Wraparound and holiday childcare – parents and childcare provider ‘rights to request’
The Department for Education is also seeking views on draft advice about how schools should respond to requests regarding childcare outside of normal school hours and over holidays.
Closing date: 29 February 2016.

Personal Independence Payment: aids and appliances descriptors
Consultation about the Personal Independence Payment Aids and Appliances Descriptors.
Closing date: 29 January 2016.

SENDreams2016
SENDirect are asking families for suggestions about adjustments to services for disabled children on social media using the hashtag #SENDreams2016.
Until the end of January.

Eye-care services
The charity SeeAbility is seeking views  about eye-care services, from parents and carers and people with learning disabilities.

Resources – January 2016

ResourcesA round-up of helpful resources for families of children with brain conditions.

Access to Work
Employers’ guide to Access to Work: money to help disabled people do their jobs. (Dept for Work and Pensions).

Employing disabled people and people with health conditions
A guide for employers on how to attract, recruit and retain disabled people. (Dept for Work and Pensions).

Finding work for those with autism: self-employment success
Discussion article by M. Bennie, (Autism Awareness Center Inc. Canada).

Brain disorders across the lifespan
An open access collection of articles from 2015 and a perspective on promoting nervous system health, (supplement to Nature journal).

Family mediation
Leaflets about mediation for families thinking of separating, (Ministry of Justice).

Baby monitors
Advice about the use of baby monitors, (Swiss Federal Office of Public Health)

What you’ll need for your baby
Advice  about equipment for babies including the safe use of bedding and cots,  (NHS Choices).

Help in the early years if your child has additional needs
Factsheet for parents from Contact a Family.  Applies mainly to the new system in England, but also of relevance elsewhere).

Which School? For Special Needs
A searchable database of Special Schools, (John Catt Educational Ltd).

A guide for young people supporting each other
Peer support tool for young people to use themselves from the Association for Young People’s Health.

Dealing with issues relating to parental responsibility
Guidance for organisations looking after children while their parents are not with them, (Dept for Education, England).

Read Kindle books on your computer
Free programme to download Kindle books to a computer. Book format conversion software, http://calibre-ebook.com/ (Calibre).

Fire safety leaflets
Guidance for people with sight, hearing or mobility issues, https://www.gov.uk/government/publications/fire-safety-for-people-with-sight-hearing-or-mobility-difficulties; and fire safety for parents and child carers, https://www.gov.uk/government/publications/fire-safety-for-parents-and-child-carers (Dept for Communities and Local Goverment).

My area
Information and feedback website about services for adults with autism in each local authority area of England, (Autism Connect).

SugarSmart
Free app for parents to look up the sugar content of food products. (Public Health England).

Communicating with Music

Our Parent Support Consultant Gill Gleeson takes a look at communicating with music.

“Because music is a way of communicating other than with speech, or in addition to it, it is obviously something to look at for (though not only for) children with speech and language difficulties.

A number of claims are made for the value of music to children including those with additional needs. This article concentrates on one aspect, that of its communicative qualities. These do not depend upon understanding a language, but they can be very individual because the perception and responses to music are shaped by preferences and a person’s history. The music that a person likes tells you something about them.

How music can communicate

Among the ways in which music communicates (whether or not there are any words such as words of songs) are:

  • sounds as signals;  a bell, Alpenhorn, vehicle coming along a road, hooter on the river, etc., giving a message or a warning of some sort.
  • sounds producing associations in the mind, for example someone who has heard a blackbird singing on a trip to the countryside is likely to remember the trip if they hear a similar song elsewhere.
  • music in which people share a similar message or want to express something in a united way, e.g. an anthem, hymn, football song or those sessions on coach trips.
  • in rhythms (heartbeat, walking, rhymes etc.)  Music interacts with the body’s and mind’s own rhythms and frequencies.
  • music that expresses, reflects and generates mood, for example the gentleness of a lullaby.

Methods of musical communication

Many parents naturally sing to children, especially as babies.  Perhaps not all parents realise how valuable that is.  For those who would like to do more and want some more ideas, there are plenty among the sources listed below.

Musical methods for entertainment, therapy or education seek to exploit the communicative aspects of making music, as well as just listening to it, and its potential for expression.  Almost everyone does something with music in everyday life, by choosing what to listen to, singing, teaching with rhymes and action songs, or playing with children.  It is not necessary to be a trained musician, although musicians can do more with it.

The way in which musical activities enable social inclusion and meet social needs has been studied (e.g. Welch 2014). Singing, for example, is an engaging way to bring a group together. Claims have been made, beyond this, about additional benefits of active music-making with musical instruments, for example Schlaug, 2014.  Education for children tends to focus on active rather than passive musical activity. Speech therapists also sometimes work with music as a tool, for example at Blethers, 2013 (referenced below) a speech therapist describes in detail how she does this.  Educationalists might work on finding musical preferences and moving within and beyond them.

Some methods in music therapy use improvisation to communicate one-to-one with children. There are different schools of music therapy but one is described in López-González 2012 (the techniques used are described at pp.13 onwards). Among the characteristics they work on are communicating, listening, memory, movement, awareness, and reflecting back / dialogue. They also sometimes work on adjusting and extending the range of specific movements.

Most of all, perhaps, music allows people to express themselves, and to experience and understand expression.

When music is a nuisance

It is also worth saying that music can be intrusive. It is ubiquitous as a background, at events, in shops, or behind the action in films or TV programmes. For those more sensitive to it or with attention or concentration issues, background music can divert attention.

As well as leading the hearer into moods and feelings (sometimes different ones for someone wanting to divert from their own), for the musician it might also lead into analysis, a drawing into the architecture and flow of the music, absorbing and enriching in the right context such as a concert or relaxing at home.

Music successful as background to e.g. study probably is something that a person likes when they are really hearing it, but that is easy to “tune out” when they want to concentrate on something else. On the other hand, it could be a very difficult thing for a child with attention problems if they wish, or are required, to concentrate on something else.

I hope some may feel inspired to add music, or more music, to enrich communication and perhaps even discover a talent in a child who is drawn by it”.

Gill Gleeson

Sources

Blethers Speech and Language Therapy Edinburgh and Lothian, 2013. Music and communication development.  http://edinburgh-lothian-mobile-speech-therapy.co.uk/news/music-and-communication-development/%E2%80%9D.

Brand E. and Bar-Gil O 2008, Improving Interpersonal Communication through Music. In: S. Malbrán and G. Mota (Eds.), Proceedings of the 22nd International Society of Music, Bologna. (then: Min-Ad: Israel Studies in Musicology Online, http://www.biu.ac.il/hu/mu/min-ad/10/04-Eva%20Brand%20and%20Ora%20Bar-Gil.pdf: musical methods used are described particularly on pp61-64).

Hansen M. 2012, Music as Communication. Video, https://www.youtube.com/watch?v=hL7TitXImrs (Tedx Talks, Teddington).

López-González M. and Limb CJ. 2012, Musical creativity and the brain. Cerebrum, Epub 2012 Feb 22, http://www.ncbi.nlm.nih.gov/pubmed/23447788.

Music One2One 2016, Communicate Through Music activity pack, http://www.literacytrust.org.uk/assets/0000/0806/CommunicateThroughMusic.pdf (National Literacy Trust).

Ploger M. and Hill K. 2005, The Craft of Musical Communication, http://www.musicalratio.com/gpage.html (Institute for Musical Perception).

Sacks, O. 2009, Musical Minds. Documentary (NOVA, USA, http://www.pbs.org/wgbh/nova/body/musical-minds.html).

Schlaug G. 2015, Musicians and music making as a model for the study of brain plasticity. Progress in Brain Research 217:37-55. doi: 10.1016/bs.pbr.2014.11.020, http://www.ncbi.nlm.nih.gov/pubmed/25725909.

Welch GF et al. 2014, Singing and social inclusion. Frontiers in Psychology. 2014 Jul 29;5:803. doi: 10.3389/fpsyg.2014.00803, http://www.ncbi.nlm.nih.gov/pubmed/25120514.

Autism and Mental Illness: a Teenager’s Perspective

Mair Elliott

Mair Elliott

Mair Elliot shares her experience of living with both a mental illness and Autism.

“Since 14 years old I have had doctors, psychiatrists, psychologists, therapists, nurses, occupational therapists, dieticians, support workers, counsellors… and various other professionals poking and prodding at the psychological mess in my head. I have tried more medications I than I can count on my hands, and I have taken more pills than I’d care to divulge. I have tried talking therapies upon talking therapies, some of which I know so well I could easily facilitate a course for someone in need (but I won’t).

Some people may find my recent decision to reduce the professional help I receive currently to just a phone call once a month a bit risky or odd. But the truth is I have never been able to develop strategies to help myself by myself. Falling ill during my teenage years resulted in me not only missing a heck of a lot of school, but I also missed out on the opportunity to discover how I would live my life, how I would be me, and even who I was/am. I was told how I was supposed to live my life, or I was told what was ‘healthy’. Which was fine during the time I was incapable of looking after myself.

But now I am able to look after myself, at least at the basic level. What I find frustrating is that the generic advice given to me from almost all of the people I have met, is not actually moulded in a way I can live with. Don’t get me wrong, I needed professional help to keep me alive, and I will always be grateful for the tireless efforts of the professionals, and people who had to deal with me during a very dark time in my life. But I have encountered an illusion which I believed was real for a very long time.

Let me create a metaphorical example, I am assuming that all of you have seen circus workers/clowns/or pretty much anyone create balloon animals. Well let’s say that when I was ill I was just an empty balloon. Getting professional help and advice meant that I could fill my balloon with air. It’s better than it was before, because at least now it’s inflated, but it’s just a long thin balloon. In order for it to become a balloon animal I have to twist, turn and mould the balloon until it’s an animal like shape. The only thing is, I don’t have detailed instructions, only very brief outlines.

Over the years I have been given some helpful advice on how to live my life in a healthy and happy way, but I need to take that advice and personalise it. I need to work out how that advice is going to fit into my life, and the way I live it. I need to work out which advice I have been given is going to work for me, and which advice is not going to help me.

When I discovered I was ill, I made the assumption that all I needed was a bit of therapy and possibly a bit of medication, and then I would be back to exactly who I was before I fell ill, or even a better version of who I was. I was naïve enough to believe that I would get better and be completely 100% healthy, and my life would be amazing and sparkly. I also thought that getting better was just a straight line on a graph upwards (anyone who’s been to therapy will understand the graph of recovery comment I just made).

After 10 weeks of therapy and several failed attempts of trying medication, you’d think I would have realised that this wasn’t the case, or at least when a year had gone by and I ended up living on a psychiatric unit. But the truth is I didn’t realise that I wasn’t going to make some miraculous recovery for about 3 years.

When I had this realisation I could finally takes steps towards recovery. I understood for the first time that I was going to have to put myself out there, and pretty much expect to fail continuously until I worked out ways that I could cope with life. As an obsessive perfectionist it was not a comfortable realisation, but I knew that I was going to have to work hard, and that I was going to have to accept that I was not going to do well in every step and decision I had to make. Sometimes I was going to fall down or get sucked back into old ways, and I had to be OK with having a recovery graph that looks more like a squiggle on page than a logical and tidy straight line upwards.

And this is why I don’t believe in full recovery. I can always be getting better, I can always be improving things for myself. Full recovery suggests to me that there is an end to this journey, and I don’t want that to be the case. I will always be Autistic, I might reach a point in which I am symptom free from my mental illnesses. But that won’t mean that I won’t still face challenges, in fact I know I will definitely face challenges because being Autistic sometimes in not easy.

I have gotten to the point now where I have addressed the fundamental problems I faced when I was ill, such as not eating, self-harming and self-destructive behaviour. I had the expertise of professionals to help me get to this point. But now I have to address the issues I face with life outside of my illnesses. Issues like how do I deal with Autism and maintaining professional and personal relationships, what is it that I really enjoy and how can I make it a career, what is it that helps me be happy and healthy, and most importantly what are the things which I cannot change and how can I come to accept them.

In order to work out answers to my questions, in order for me to live a long and happy life, I believe I need space now to explore. So that is why I have decided to reduce the professional help I receive down to a phone call once a month. I know when I need to ask for help, and I understand that my journey is far from easy, but for now I know this is the right decision for me.

If I have learned anything from the past few years is to never take the simple things for granted, like the love and support from family and friends, or the ability to smile and be happy”.

Mair gave us full permission to publish this article which first appeared on her blog.

You can also read Mair’s article “Puberty and My Autism Diagnosis”.