£1500 winner

Paul Slade and his dog DjangoAnother Cerebra supported has been counted in!

Another Cerebra supporter has won £1500 in our Count Me In Lottery!

Paul Slade, pictured with his dog Django, one the weekly prize by taking part in our lottery. Every week a new winner is crowned after donating just £1.20 a week.

The money raised through our lottery is vital to supporting children and young people with neurological conditions all over the UK.

Our lottery is the quickest and simplest way to show your support. Just click here to learn more and find out how to join.

Congratulations Paul!

Dawn’s Rock and Roll Marathon

Dawn taking part in the Rock and Roll MarathonA huge well done to Dawn and Martyn for running the Liverpool Rock and Roll marathon!

On the 25th of May Dawn and Martyn completed the Liverpool Rock and Roll Marathon, raising over £600 for Cerebra!

Although neither of them had run a marathon before, Dawn decided she wanted to raise money for a charity like Cerebra thanks to her niece Abbie, who has cerebral palsy.

“It’s been a hard long 18 week training slog,” she said, “taking me to places mentally and physically I have never been before.”

It was all worth it in the end, however, with Dawn finishing the gruelling run in just over four hours. The run took them past some of Liverpool’s most iconic landmarks with live bands and music helping the runners on their way.

Everyone at Cerebra says a huge thank you to Dawn and Martyn for taking part in the marathon. Every penny raised is vital to making a positive difference to lives of children like Abbie.

Finding Local Information

We take a look at some good ways of finding information on services and support in your area.

One of the hit-and-miss aspects of finding information is knowing that something exists, in order to search it out.  It is possible to miss out, at least for a while, on services, opportunities, equipment etc. because their existence has not yet come to light.  This article points to sources of information that either list what is available or lead to contacts with local people who will know.

Finding public services

Many city, county and district councils split what they publish, between visitors’ and residents’ information. A family with a child who has additional needs might want to consult both kinds, whether that is just for a visit or to put things in place for a new situation / area; broadly speaking, for both leisure / local highlights / informal activities and statutory / community services. https://www.gov.uk/find-your-local-council will find the contact details for a local authority in a county or city, however it can be overlooked that there are different kinds of councils, and more than one may cover the same area.

Smaller town and parish councils can be a source of useful local knowledge. An example comparing the type of information available is Patchway Town Council, which exists within the South Gloucestershire unitary authority (“unitary” indicating that it functions as both a county and a district council). Local authority departments may go under different titles but will include children’s services with children’s social services, education, adult social services, housing, planning, Disabled Facilities Grants, discretionary grants, trading standards, transport and disabled vehicle parking among others.

The local authority will cover some community health-related services, but this side of things will be NHS-based or linked to the NHS in some way. For example, equipment services are likely to cross over between district nurses linked to GP surgeries, and social services (although if you are just visiting an area and need some temporary equipment, the local branch of the Red Cross might be the place to start.) To find local health services, NHS Choices, gives some details and links to parts of the UK from “other NHS sites” at the bottom of the page.

All or most of the above will be very familiar to people with some experience, but to those who are new to it, it can seem like a maze.

A few other links relating to public services:

Local Family Information Services, which provide a range of information on services available to parents, including parents of disabled children.

NHS Choices services search, to find local health-related services.

Transferring to new services, including records, can often be assisted by the services you are moving from. Capability Scotland publish a guide for people moving to there with a disabled child, some of which could also be useful in other parts of the UK. A quick reference to all your child’s needs and existing services (such as a Personal Portfolio) can be a useful tool.

Transport information can be found at: Traveline.

Finding charities and other support

Good starting-points to get the lie of the land, as it were, are libraries (and librarians) – nearby ones can be found by entering a postcode or location name at: http://www.findalibrary.org.uk/#Start.

Tourist Information Centres are listed at: http://www.information-britain.co.uk/tic.cfm (in Northern Ireland, Visitor Information Centres, http://www.discovernorthernireland.com/Visitor-Information-Centres-VICs–A2216).

Voluntary services organisations are likely to know what charities and informal groups are active in an area: in England, these are the Councils for Voluntary Service (CVS), listed at: http://www.navca.org.uk/directory/home.aspx. Wales has County Voluntary Councils, listed at: http://www.wcva.org.uk/members-partners/county-voluntary-councils. In Northern Ireland, the NICVA lists the organisations at: http://www.nicva.org/members_a-z, and in Scotland, many voluntary organisations are listed by area at: http://www.iscotland.co.uk/local/charities-and-voluntary-organisations/, and the umbrella body is the SCVO.

Another source of information about carers’ services and support groups in England, searching by town or postcode, links from http://www.nhs.uk/CarersDirect/guide/parent-carers/Pages/Parentsupportgroups.aspx.

For finding private services and suppliers: http://www.thephonebook.bt.com/publisha.content/en/index.publisha# (the listings here include youth organisations and some local support groups under “community groups”). This is not to overlook the other types of directory, yellow pages etc.

For regional and national groups, and wider organisations and services that include local activities; Netmums, contains discussions with people who have already been involved with some of them.

Local offices of national charities are good at knowing what else there is in an area, the characteristics and the contacts. Both local authorities and voluntary services are likely to list them, or it may be a case of looking at the website of the national charity concerned. For example, we have Cerebra regional family support workers around the UK.

A note about moving to a new area in the UK

There are broadly two types of people in this; those who like to research and get a good picture of a place and what is available, and those who would rather identify one key service provider for their child, or one relevant parents’ group, and find out from them what else there is when they get there. Most people who are interested to read this article on the Internet probably lean more towards the research approach, and it has to be said that at least some research is a good idea, not only in terms of looking up information, but also in terms of following up that information – remembering the salutary case of a family with a child whose educational needs were not being met well where they were living and consideration was being given to a specialist residential placement a long way from home. The family wanted their child to continue to live at home, so they uprooted everything else in order to move to a county where there was a day-school that, on paper, appeared to cater for the needs. However they did this without asking the school and, having arrived there, they found that the school did not agree. Another thing that can happen with local information – or any information – is that a facility may have changed since it was last put on to the Internet, even by an official source. I found out myself, recently, that this even extends to bus timetables, entailing a long wait at the bus stop.

If there is a choice about what area to move to, Neighbourhood statistics, and a school finder, which includes Ofsted reports etc., may be of interest.

The charity Shelter provides a basic reminder list of things to consider when moving home.

Other local intelligence

Grants from charitable trusts are often tied to what geographical area you live in, even sometimes covering a small area such as a village. You can search for these by postcode and/or other criteria at http://www.turn2us.org.uk/default.aspx.

Three 21st-century resources that are useful when you need to know about a local environment, either for a visit or to move to the area, are satellite imagery, online versions of local newspapers and local radio stations that provide online listening facilities. Streetview, Google Earth or a route-finder, for example, can give a view of an area or postcode that indicates whether there is a safe garden / park for a child to move about outside, how near a place is to facilities, what kinds of roads there are, and other things. The newspapers and radio stations will give some idea of the flavour of an area, what’s on, and probably some specific information as well.

Going abroad

The government publishes a series of “Living in” guides, covering a number of countries, containing essential local information for people planning to move abroad.

If you are looking for a particularly specialised or very specific service for a child within an area, Cerebra’s regional office or the national helpline can advise on further sources for that information.

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.

Books in the library especially for kids

kids-booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability.

Listed below are of some of the more popular books. This month we are featuring books for younger children and next month we will be featuring books for older children.

You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

The full list of children’s books in our library can be found at on our library pages.

Disability info for younger children:

C0111 – Looking After Louis (autism)
C0129 – Don’t Call Me Special (special needs)
C0134 – Do I Have to go to Hospital
C0136 – Victoria’s Day (Down Syndrome)
C0144 – My Friend Has Down Syndrome
C0161 – The Brave Soul’s Club (dealing with serious illness)
C0168 – Kevin Thinks (Aspergers)
C0210 – My Autism Book
Fiction for younger kids:

C0098 – Susan Laughs (being in a wheelchair)
C0040 – Andy and His Yellow Frisbee (autism)
C0058 – Spark’s Excellent Misadventures (adhd)
C0128 – Just Because (siblings)
C0150 – Ian’s Walk (autism)
C0156 – Sometimes (staying in hospital)
Signing, Makaton & PECS:

C0023 – Sign & Singalong Twinkle Twinkle Little Star
C0024 – Sign & Singalong Baa Baa Black Sheep
L6161 – Learn to Sign with Olli (BSL)
C0162 – My First Makaton Book of Colours
C0163 – My First Makaton Symbols and Signs – book 1
C0164 – My First Makaton Symbols and Signs – book 2
C0165 – My First Makaton Symbols and Signs – book 3
C0177 – My Makaton Book of Nursery Rhymes
AV6392 – Makaton Nursery Rhymes (dvd)
C0208 – PECS Cards Keyrings – Feelings and Emotions and Instructions and Behaviour
Activity books and CDs:

C0108 – The Animal Boogie (book and CD)
AV6520 – Motor Skill Activity Fun (CD)
AV6521 – Tuned in to Learning for Students with Multiple Disability (CD)
Sound books:

C0187 – What’s That Noise Spot
C0188 – Room on the Broom
Touchy Feely books:

C0185 – That’s Not My Mermaid
C0186 – That’s Not My Dragon

C0157 – A Volcano in my Tummy (anger)
C0176 – The Red Beast (anger and Aspergers)
C0184 – Ellie Bean Drama Queen (sensory processing disorder)
C0151 – Don’t Behave Like You Live in a Cave
C0166 – What to do When you Dread your Bed (sleep)
C0211 – The Disappointment Dragon (Aspergers)
C0212 – The Panicosaurus (Aspergers)

C0118 – The Lonely Tree
Books for siblings:

C0039 – My Brother Matthew (disability)
C0077 – My Brother is Different (autism)
C0160 – My Brother s Autistic
C0183 – Our Brother Has Down Syndrome
C0206 – Babies are Noisy (autism)
Next month… look out for our list of books for older children!

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.

Our new Legal Entitlements Research co-ordinator

Carys Hughes, Co-ordinator for the Legal Entitlements Research Project, describes her role and explains how the Project may be able to help you.

I joined Cerebra on 7 April 2014 as the co-ordinator for the Legal Entitlements Research Project, which has been in operation since October 2013. Having qualified as a solicitor in private practice, I spent 11 years in a complaints-handling role in the public sector before joining Cerebra. I hope that my legal background, teamed with my experience in dealing with people’s concerns, will help me to contribute to the success of the Project.

The Project has evolved from a number of initiatives set up by Cerebra to inform parents of their legal rights. A series of popular Cerebra seminars, delivered by Professor Luke Clements of Cardiff University, gave rise to several ‘frequently asked questions’ and resulted in the publication of our Parent Guides, followed by a set of precedent letters which parents could adapt for their own use . Cerebra recognised that some parents might need additional support in order to access their legal rights and responded by establishing the Project, in conjunction with Cardiff University.

Law students at the University (under the supervision of qualified staff, firms of solicitors and other disability organisations) aim to provide legal support to families who are experiencing difficulties in accessing health and social care services. Part of my role as co-ordinator is to consider requests received from parents and refer appropriate cases to the University.

As well as providing practical assistance to families, the legal advice scheme also forms part of a wider research programme, under the direction of Professor Luke Clements as our Academic Chair. The research is aimed at improving our understanding of the difficulties faced by families in accessing support services and learning how these problems can be resolved effectively. Cases referred to the scheme will provide a valuable source of information to the research team at Cardiff about the type of problems encountered by families and the effectiveness of the scheme’s interventions.

The research team will also be developing a UK wide register of support resources, comprising information about advice and support agencies which could help families secure the support services they need.

Recent successes have already been reported (Oliver’s story and Jinny’s story) and we hope to publish many more success stories as the Project progresses. If you have a legal question about your child’s access to health or social care services, please have a look at our website for further details about the scheme and contact us at probono@cerebra.org.uk

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.