The Cerebra Family Research Group

torheadlineThe Cerebra 1000 families study will look at the experiences of families as they bring up a child with a learning disability and/or autism.

There is probably only one question in the field of intellectual disability (ID) and autism family research that has been answered pretty much beyond doubt.  Parents, especially mothers, raising children with ID or autism report more stress and mental health difficulties than other parents.

We wanted to explore this further and in January 2014 Prof Richard Hastings, based at Warwick University, was awarded research funding from Cerebra to carry out the first large scale and long term study to identify and understand family stress, its causes, strategies for coping adopted by families and the outcomes for all family members.

The Cerebra 1,000 families study will follow 1,000 families over a five year period.  Children between the ages of 4 and 11 years with an intellectual disability or autism will be recruited into the study shortly.  Data will be collected from both parents (primary and secondary parental caregivers) where there is more than one parent in the household, and from one parent only in single parent households.

Data collected will allow the researchers to address questions about parental well-being and the two way relationship between a child’s behaviour and parental well-being; why some parents report significant psychological stress and others do not (psychological variables and socio-economic variables); and how parents and children are affected by the transition from primary to secondary school.  In addition the study will focus on fathers of children with intellectual disability or autism and their psychological well-being over time and the positive and negative outcomes for siblings.

Cerebra is also planning a conference with the University of Warwick focussing on Mental Health in Children with Learning Disability and/or Autism.

When? – 4th June 2015

Where? – The Welcome Centre, Coventry

Who is it for? The conference aims to bring together researchers, practitioners, educators and organisations working with children with Learning disabilities and/or autism in the West Midlands. Parents and carers are also welcome.

What is it about? The conference provides an opportunity for sharing research information relating to mental health in children with learning disabilities and/or autism, understanding national developments as well as discussing the implications of Education, Health and Care Plans (EHCs).

Keep a look out for more information about the conference and how to book in upcoming newsletters!

Meet Our London Marathon 2015 Team!

London marathonWe catch up with our team for the London marathon 2015!

The team at Cerebra are looking forward to the London marathon as this year we have four very brave people running it for us!

Some of you may know our first recruit – local radio DJ James Southon who has shows on Radio Carmarthenshire and Pembrokeshire. When Cerebra approached our local radio station Radio Carmarthenshire to see if any of the DJs would like to run the marathon for us, James stepped up and swiftly commenced with his training!

James told us: “I had sworn NEVER to enter another running race again.

In March of last year I ran the Llanelli half marathon and it nearly killed me! However, when I looked into the brilliant work Cerebra do with children suffering with neurological problems both locally and nationally I felt obliged to step up. They really do make such a massive difference.”

Race day, 26th April is James’ birthday so he is really making sure it will be one to remember!

Our next team member has a very personal reason for supporting us. Michael Harris is running for a very brave little boy who was born with Corpus Callosum and Cerebellar Vermis. Michael has watched the boy’s mother, who is a friend of his struggle to get information and answers about her son’s condition. Michael is raising money for us because we support children and their family’s needs and also help provide information to empower parents.

Andy Day, our next team member will be 52 years old on race day, but despite this, he recently climbed Mont Blanc before setting his sights on the marathon!

Andy is also running for personal reasons as his cousin’s daughter was born with Band Heterotopia.

Andy has watched as cousin Sharon has faced great hardships whilst raising daughter Sophie but has also seen the difference Cerebra has made to their lives. Sophie is now 20 and although life is still hard; Sharon has been able to find some support through Cerebra.

The final addition to team Cerebra is Steff Gadd who is raising money to thank us for funding a trike for her cousin’s son, six year old Harry.

We’re looking forward to cheering each of them on and remember, you can support three members of the team through their online giving pages: James, Michael and Andy.

We wish all of our marathon runners the very best of luck for 26th April.

Mike Shares his Story

Mike and LouieMike is father to 11 year old Louie who has Cerebral Palsy. He shares their story with us.

My name is Mike and I’m a tutor at a college in Exeter. I have three children aged 21, 20 and 11 years. One is training to be a teaching assistant and one is working as a care assistant. My youngest son Louie lives with me.

When Louie was a baby we thought everything was fine apart from just a slight delay in his development. When he was 6 months old the doctors broke the devastating news that he has cerebral palsy.

The cerebral palsy (spastic diplegia) has affected his mobility, speech and development. Louie is 11 but has the development of a 2-3year old. He is doubly incontinent and has limited speech and needs constant care and attention. He was also diagnosed with a bicuspic aortic valve (heart problem) so has a heart murmur and reflux and several other issues.

My partner and I had separated when Louie was 6 months old, but we both wanted to do what was best for our child so attended meetings about Louie together. I remember in the first meeting the doctor had to be very straight forward and factual and had to say ‘your son has a disability’. One of the things I always remember the doctor saying was ‘he’ll never play rugby’ and being a rugby player myself, hearing that was devastating.

The first thing is the shock and then the realisation that this is real and you don’t know where to go for help. I didn’t feel like there was anywhere I could go for help – I didn’t know anything about cerebral palsy, about medical conditions, what the limitations might be for our son, what the future held. I didn’t ask questions at first because I was in shock – I had been given this diagnosis that my baby won’t be able to walk, won’t be able to talk. It was difficult to know where to go to for support. What I really struggled with was that there was nothing that I could do about the fact that he had cerebral palsy. I couldn’t change this medical condition that is permanent damage to the brain; the brain can’t repair itself.

Instead of trying to find an answer of how it could be ‘fixed’ or trying to find someone to blame, the next thing you can try to do as a parent is try to educate yourself or try to find out as much as you can from other people in the same situation – not from an academic or medical point of view. How do you deal with this? What do you do about it? I mainly wanted to find out how his cerebral palsy would affect him.

I’ve been involved with the Cerebra Research Unit at Exeter University (PenCRU) for 5 years now. With PenCRU, I feel as if I am doing something, even if it’s only a little bit.  I’m doing something to try and make a bit of a difference. If I can help someone else going through the same thing to make their journey a bit easier it will be worth it. It’s about trying to use my experiences in a positive way.

Being part of the Family Faculty at PenCRU I can pass on my opinion and advice to help others make informed decisions in the same situation. It’s a bonus if I can help promote people’s awareness and help educate and inform people – I would like to be able to help those in a similar situation to me when they find themselves in the same position and support people along the way.

I really enjoyed attending a recent Cerebra conferences with PenCRU. It was great to be able to speak to the fundraisers who are trying to make a difference for your child – it was a great opportunity as a parent to share my experience. It’s great for people to see where the money goes and who it helps – you can say I am one of these people who have benefited from this and who can pass on knowledge and information.

The Peninsula Cerebra Research Unit (PenCRU) is based at the University of Exeter and carries out research that aims to improve the health and wellbeing of disabled children and their families. PenCRU is all about forming meaningful partnerships with families, working with them to undertake research.

You can find out more about the work PenCRU does here.

Hobbies

hobbiesWe talk about the benefits hobbies can have for children with neurological conditions.

A hobby is a bit of an indulgence, that you take time to do just because you enjoy it. Something as relaxed and apparently non-essential as a hobby might well get crowded out among all the things that families of children with disabilities and special needs have to be concerned with. Yet suitable, enjoyable and particularly long-lasting hobbies could enrich a child’s wellbeing, and the family’s.

The effects of a hobby

Participation in activities with other children helps to build friendships, skills, social understanding, self-expression and a sense of purpose (Law 2006), yet children with disabilities tend to encounter fewer natural opportunities for this and often need more active help to be able to join in. Hobbies and general leisure activities are a way in. It can take some determination to overcome lifestyle restrictions and isolation that can easily affect the lives of disabled children and their families.

Doing something that a child wants to do, when they want to do it, adds a welcome element of choice and freedom. Like play, it builds skills and knowledge in a less structured way, involving some self-direction, self-expression and curiosity. It can be recuperative after a tough experience such as being in hospital, and can be a thread of continuity if there are changes in other aspects of a child’s environment. Skills could transfer to other activities and settings, and may help to strengthen functions that are otherwise weak, such as coordination or memory. More active hobbies can be introduced deliberately to displace unwanted movements or behaviour by substituting something more appropriate that is similar in sound, sight, feeling, and motivation (McKee, 2013).

As they get older, hobbies could draw young people into their own circle of friends with common interests, into adulthood. Something that a child finds they are good at can bring a sense of accomplishment and added self-esteem (see the article by “Ben T.” referenced below). As Ben T. also points out, a hobby does not have to be expensive.

Some general ideas

Recreation is a skill that many children specifically need to learn. It is also true that planning activities, which many of us enjoy doing as part of a hobby, can be daunting for someone with a neurological condition unless they have someone to help them. The characteristics of a lasting hobby will probably include:

It is something that the child naturally takes to;
it is easy to fit into the times available, without anxiety or disruption;
elements of it, at least, can be initiated, enjoyed and completed alone (McKee, 2012).
Obviously, according to personality and abilities, suitable hobbies will vary. For example some children will only enjoy things they can do sitting down quietly, while others will only enjoy moving around, preferably at speed (sports, martial arts, group adventures). Some parents may already know or be able to make a good guess at something a child would like; for others, a few small taster sessions might come up with something they and/or you will surprisingly take to.
Again, some activities need a group (e.g. dancing) and some don’t although they can (e.g. photography, scrapbooking, weaving, painting, metal detecting). It might be encouraging for children to produce things that they can give as presents to friends or relatives.

The approach to a hobby is a more flexible one than to a task that has to be completed or practised for a certain amount of time each day, like homework or exercises. It is something that always should have an element of enjoyment in it, even at times when it involves a challenge.

Some ideas about specific hobbies

Typing the words “list of hobbies” into a search engine brings up thousands of ideas, some more suitable for individual children than others but many would be adaptable in some way if necessary. Two websites to start on are:www.dmoz.org/Kids_and_Teens/Sports_and_Hobbies/ and www.kidsguide.org.uk/cheshire-children/crafts-hobbies-and-special-interests-cheshire/. Most will need only a small amount of research and gathering materials together before being able to get going on a small “taster”.

To give one of my own hobbies as an example; this is a good time of year to start growing vegetable or flower plants from seed, which could move on to the wider concept of “gardening”. The timetable on the back of the seed packet is a guide to when to sow, additionally counting backwards from the time it will be OK to transfer to a garden outside which will vary geographically. For example, seedlings that have reached a suitable size could safely be planted out earlier in the Channel Islands than in the Shetland Islands. Another thing that it is important to get right so that the plants will come encouragingly to fruition is a consistent amount of watering (not too little, not too much and for most plants not too sporadic). The art of watering is described at: www.coopext.colostate.edu/4dmg/Plants/guidline.htm. Other information that might be useful if children or pets tend to put things into their mouths is knowing what not to grow: poisonous garden plants are listed at www.rhs.org.uk/advice/profile?pid=524 (Royal Horticultural Society).

The amount of gardening information available is almost overwhelming, so I have picked some out. Specifically for children with disabilities, some gardening ideas can be found at Disabled world. These include indoor options for colder times of year, or for those who don’t get outside very much. More on indoor gardening:www.instructables.com/id/Indoor-Gardening/ and www.planetnatural.com/growing-indoors/).

Others are:

A look through those should equip anyone with the information needed to start a child on it and an idea about how it could be done in your circumstances. (Having a garden outside is not absolutely necessary.)

“But (s)he’s not interested”

How to find something that a child will be interested to develop as a hobby? Some will already show an interest in something, but others may not feel inspired by or confident in anything at all. Ways of discovering a spark include: spending time trying out a few new things in short and simple ways; sounding out others who work with the child, such as their one-to-one at school; and finding their strengths (Werrell, 2014). If a more active hobby is unlikely to catch on, a more passive one in which the child participates more or less just by being involved (e.g. horse-riding or scrap-booking) might still be possible.

Hobby-related breaks

If you are thinking about a break or a change of scene for the summer, there are hobby- and activity-based holidays, also supported holidays involving new places and activities. If it is not possible to get away, a home-based holiday taking a few days for local recreation, discovery and the pursuit of a hobby could be refreshing. Check out Cerebra’s signposts pages for Recreation, leisure and holidays, and Funding for holidays and outings.

References

News – February 2015

newspapers (1)Roundup of news and legislation.

Personal Independence Payments
Revised timetable for PIP (Personal Independence Payment) to replace DLA (Disability Living Allowance) around the country (for age 16+), (Dept for Work and Pensions).

New version of the Code of Practice for the Mental Health Act 1983
This reflects some significant changes in the law since the last version in 2008.  It aims to provide stronger protection for patients and clarify rights, roles and responsibilities, (Dept of Health).

Mental Health in Children and Young People
Model specification for transitions from Child and Adolescent Mental Health Services (CAMHS) to adult mental health or other services. Guidance on what needs to be put in place and how, http://www.england.nhs.uk/wp-content/uploads/2015/01/mod-transt-camhs-spec.pdf (NHS England).  Includes standards for young people’s and parents’ participation and information that should be given.  NHS England have also published guidance on choice and legal rights in mental health care, http://www.england.nhs.uk/ourwork/qual-clin-lead/pe/bp/guidance/.  The Royal College of Psychiatrists have published guidance on when children and young people should be seen by a psychiatrist,http://www.rcpsych.ac.uk/mediacentre/pressreleases2015/childadolescentguidelines.aspx.

Legislation

2015 No. 32 (C. 3), The Welfare Reform Act 2012 (Commencement No. 9, 11, 13, 14, 16, 17 and 19 and Transitional and Transitory Provisions (Amendment)) Order 2015. Further amendments to the Welfare Reform Act including two that will allow claimants of Universal Credit to use an account from a Credit Union, mainly from 6 April 2015.

2015 No. 13, The Advice and Assistance (Assistance by Way of Representation) (Scotland) Amendment Regulations 2015. From 26 January 2015, allows for Assistance By Way of Representation (“ABWOR”) to be available in relation to the determination, at a pre-hearing panel meeting or at a children’s hearing, of whether a person should be deemed to be a “relevant person” under section 81 of the Children’s Hearings (Scotland) Act 2011.

2015 No. 21, The Children’s Hearings (Scotland) Act 2011 (Rules of Procedure in Children’s Hearings) Amendment Rules 2015. From 26 January 2015, applies to some of the procedures followed at children’s hearings, and some of the information provided for them.

2015 No. 46, The Social Security (Information-sharing in relation to Welfare Services etc.) (Amendment) Regulations 2015. From 13 February 2015, allows information to be shared between the Secretary of State, local authorities, citizens advice bureaux, credit unions, social landlords and relevant registered charities (in England, Wales or Scotland), for specified purposes.
2015 No. 62, The Special Educational Needs and Disability (Detained Persons) Regulations 2015.  From 1 April 2015, related to children and young people in custody who may need an Education, Health and Care (EHC) Plan.  The “Appropriate Persons” to make decisions about the process would normally be their parents or the young people themselves, but there are alternative arrangements when they are unable to do this (applies to England).

2015 No. 23/24, The Motor Vehicles (Wearing of Seat Belts by Children in Front Seats) (Amendment) Regulations (Northern Ireland) 2015 / The Motor Vehicles (Wearing of Seat Belts) (Amendment) Regulations (Northern Ireland) 2015. From  20 April 2015, new rules about types of seat belt / restraint suitable for children.  The rules implement European Directive 2014/37/EC (OJ No L 59 28.2.2014, p32), http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:32014L0037&from=en.

2015 No. 34, The Social Security (Miscellaneous Amendments) Regulations (Northern Ireland) 2015. From 23 February 2015, various changes to regulations governing welfare benefits in Northern Ireland, among them one to Parents’ Learning Allowance so that it is disregarded when calculating Housing Benefit, bringing it into alignment with other income-related benefits (more details about Parents’ Learning Allowance, https://www.gov.uk/parents-learning-allowance/overview).

2015 No. 33, The Parking Places on Roads (Disabled Persons’ Vehicles) Order (Northern Ireland) 2015.  From 23 February 2015, a large number of small amendments to where and when vehicles can park throughout Northern Ireland.

2015 No. 35 (C. 4), The Education (2014 Act) (Commencement No.1) Order (Northern Ireland) 2015. Dissolves the Education and Library Boards from 4 February 2015, under the Education Act (Northern Ireland) 2014.  The five Boards are being replaced by a single Education Authority, culminating on 1 April 2015.

2015 No. 139, The National Health Service (Cross-Border Healthcare) (Amendment) Regulations 2015. From 27 March 2015, lists the elements of information that must be included in a medical prescription issued in England or Wales, in order for it to be used in another EU Member State.

Resources – February 2015

Microsoft Word - Document6Our monthly roundup of resources useful for families with children who have special needs.

SENDirect
A new information website for people in England looking for local services, particularly those buying services with personal budgets who may wish to register on the site.  It says “You can use SENDirect to contact providers of these services and negotiate a package that better suits your child. You can share your information with people in your child’s life so they can help as well. Your account lets you keep track of your conversations and lets you buy services once you have agreed them”. (By a consortium of 9 charities).

Talking Matters
Some word games and ways to reduce the anxiety that some children feel about writing tasks, (David Maythem, SEN Magazine).

Play resources for parents of disabled children
Games and a colouring book that have a developmental side to them, (Scope).

British Library Family Trail
A children’s booklet that parents can use to take them on routes around the Library in London, including games and drawing activities.

Epilepsy diagnosis and its impact on mood
Video presentation about epilepsy, anxiety and depression by a clinical psychologist, Cherilyn Mckay, (Epilepsy Society).

Youth Academy
Online videos and materials designed to give 14-21-year-olds key skills for life and work, (Tesco).