Brighter futures SPRING ’09 INSIDE ISSUE TWO The right school page 9 Raising vital funds page 12 Star sister Fourteen-year-old Ellie Devereux-Roberts has won a national award for Best Caring Child for helping to look after her severely disabled brother and sister. Eleven-year-old Meg and eight-year-old Harry suffer from a genetic condition that means they are unable to walk, talk or feed themselves. Both are registered blind and need round-theclock care. The family, from the Wirral, is being helped by the National Blind Children’s Society’s educational advocacy service to try and ensure Meg and Harry have the right educational provision to help meet their needs. Ellie’s award gives her the recognition she deserves, says her mother Debbie, 44, who teaches children with complex learning difficulties. She said: ‘We’ve recognised Ellie’s achievements over many years and it’s wonderful that other people now do as well. Not a day goes by without Ellie being involved in Meg and Harry’s care. She’s never embarrassed about them – on the contrary she’s clearly so proud of them.’ Her father Ian, 43, headteacher of Frodsham Manor Primary School in Cheshire, is understandably just as proud of his daughter. Ellie was the clear winner in the Best Caring Child category of the 2008 WellChild annual awards, which are given each year to honour the courage of severely disabled children and those who care for them. As the eldest and only fully healthy child she was involved from the start when first Meg, and then Harry, were born with cataracts and epilepsy. They both now attend special school but outside those hours the family joins forces to give them the best possible quality of life. Debbie and Ian say Ellie’s help makes a huge difference, not only as an extra pair of hands but, just as importantly, through her happy personality which helps them all cope with the demands of looking after Meg and Harry. But she still manages to have a normal teenage life, although she shows a maturity beyond her years. Ellie says: ‘I do feel quite grown-up sometimes, but my friends understand – they mostly come round to my place rather than the other way round, at least during the week when I’m needed at home. But at weekends I go out – I think I have a pretty normal social life!’ page 2
Contents NEWS: Free to listen 3 INTERACT: Have your say 4 IT EQUIPMENT: Extra-special offer 5
CustomEyes: Room for a view
6
Family SUPPORT: Meeting the need 8 FUNDRAISING: Soft-centred dragon FOCUS ON THE REGIONS: The North ACTIVITIES: Forthcoming events 14 16 10 13
Pinboard: Snapshots from around the UK
KEY SERVICES Family Support & Information Emotional support, practical advice and timely, quality, up-to-date information Educational Advocacy Independent education advice and specialist support helping children with visual impairment to access appropriate education ICT & Sensory Equipment Support, information and assessment to ensure provision of correct computer and communication equipment Recreational Activities Family weekends, day activities and a mobile home help children’s independence and life skills – and give them and their families some fun at the same time CustomEyes Books Large-print books for leisure and study custom-made to a child’s individual needs
Our mission is to enable children who are blind and partially sighted to achieve their educational and recreational goals National Blind Children’s Society: www.nbcs.org.uk Head office: Bradbury House, Market Street, Highbridge, Somerset TA9 3BW 01278 764 764 enquiries@nbcs.org.uk Birmingham Office: 1st Floor, Shawton House, 792 Hagley Road West, Quinton, Birmingham B68 0PJ London Office: Suite 30, Westmead House, 123 Westmead Road, Sutton SM1 4JH
Freephone Family Support & Information: 0800 781 1444 Brighter futures the National Blind Children’s Society newsletter is published three times a year Editorial: Joanna Roughton T 01278 764 764 M 07974 238145 joanna.roughton@nbcs.org.uk Chief executive: Carolyn Fullard 01278 764 764 carolyn.fullard@nbcs.org.uk PAGE 3 NEWS Free to listen New technology is opening up ever-widening avenues into the magical world of books There has never been a better time for children with a visual impairment to gain access to their favourite stories. Listening Books, whose patron is Stephen Fry, is offering an exclusive free trial to NBCS to celebrate the audio-book charity’s 50th anniversary this year. A new website, www.listeningbooks.org.uk, has been set up which allows the streaming of audio-books from a choice of more than 700 popular titles, many of them National Curriculum textbooks from Key Stage 2 to A-level. Listening Books Free Trial Details Log on to www.listeningbooks.org.uk Username: Listening Password: Audio (case sensitive) Terms & conditions: This exclusive trial will end on 11 May 2009. To continue to be able to stream audiobooks after this time, simply log on to their website and follow the ‘Join us’ section. Alternatively, call Listening Books on 0207 407 9417 or email info@listeningbooks.org.uk. Membership is just £20 per year for individuals and organisations who do not charge a fee. Organisations who do charge a fee are welcome to discuss alternative membership options with Listening Books. This particular free trial through National Blind Children’s Society is intended for children who are visually impaired. Publishing of these trial details on the internet or through any other media is strictly forbidden. NEWS IN BRIEF Overcoming learning barriers The National Educational Advocacy Partnership (NEAP) held its annual review meeting in January in the Diana, Princess of Wales Memorial Fund offices in London. Among the partnership’s activities in 2008 was commissioning a feasibility report to see if local education authorities (LEAs) could work with NBCS, NEAP and other visual impairment organisations providing services for children and families. The report, entitled Include Me Too, showed that a number of services, including educational advoca cy, were
lacking or inadequate in parts of the UK. NEAP’s role in developing a national network of educational advocates through financial support and training is therefore seen as crucial, and is being funded through Blatchington Court Trust and NBCS. Low energy, high risk? The European Union is planning to make the use of low-energy fluorescent light bulbs compulsory in all member states. These consume up to 80% less energy than traditional bulbs. While the move was generally welcomed as being environmentally and economically beneficial, a campaign is being set up to highlight potential issues with the length of warm-up time and lower levels of light from the bulbs, for children with a visual impairment. Now the Government is to allow halogen lamps, which do provide contrast lighting, to remain on the market. These offer 30-45% energy savings in comparison to incandescent lamps.’ NBCS joined a global initiative to put the spotlight on preventable glaucoma on March 12, designated World Glaucoma Day 2009. NBCS is one of a nationwide alliance of charities, glaucoma specialists, professional organisations and researchers who are raising awareness of glaucoma, what it does to sight and how it might affect you. The key message for World Glaucoma Day is ‘glaucoma can blind you – get your eyes tested’. PAGE 4 Letters Much-needed help My daughter Jessica Rose is now 15 years old and I am very glad to be able to say just how NBCS has supported our family. They have really delivered the direct support we needed. A special thanks has to go to NBCS Educational Advocacy Manager and VI teacher Glenys Critchley who gave tremendous support in our five-year battle to get an appropriate education placement for our daughter when her former school closed down. We were given the support of professional assessments, school assessment visits, continuous family support in helping to gather information which would support our case and representation at no less than four Tribunals until a final success. We have had great fun on the family weekends in Llandudno and the Lake District and had the opportunity to use the NBCS Caravan in Somerset which is just lovely. NBCS has made a true difference to Jessica and our family’s ability to do just some of the things any other family takes for granted. I truly hope NBCS can continue their invaluable work to reach more and more families. Kerry Seddon, Southport Write to us at: Newsletter, NBCS, Bradbury House, Market Street, Highbridge TA9 3BW, or email: joanna.roughton@nbcs.org.uk
THANKS: Prior to having my baby I read everything I could regarding having a new baby but nothing was written anywhere about visual impairment and what to look for in a new baby. Thank you NBCS for giving me the information I needed. Concerned mother
SCHOOL OUTING Exhall Grange School and Science College Mobility Officer Paul Norman arranged a visit to NBCS’s Birmingham office for some of the staff and students in January. They all had a chance to meet NBCS staff and find out about their work for children with a visual impairment. The children talked about their experiences at the college and their ambitions for future careers. And one budding photographer, Jake, showed off his skills by taking pictures of the group. Before leaving, the group were presented with two laptop computers by NBCS to take back to the college, which is based in Coventry.
PAGE 5 Extra-special offer Thanks to a specialist computer company more children with a visual impairment will be able to use PCs at home as well as school. Through its new School and Home licence Dolphin Computer Access will donate a free equivalent home use licence to any child with a visual impairment whose school buys a screen magnifier or reader from the company. The offer lasts throughout 2009 and includes a SuperNova screen reader and magnifier, Lunar screen magnifier and Hal screen reader. Dolphin’s Blindness Product Manager Dave Williams said: ‘I know from personal experience that it is not only essential to have the best computer access at school, but accessing the family PC can make all the difference to a child’s confidence and social interaction. ‘All children want to download music, instant message each other, browse social networking sites or maybe even do their homework. Why should a visually impaired child be any different?’ For more information about the Dolphin School & Home licence or download a 30-day trial of SuperNova, Hal, Lunar or LunarPlus go to www.yourdolphin.com/schoolandhome Abigail’s story As I sit writing this Abigail is giggling away playing the Nursery Rhymes game on her computer, which NBCS has kindly funded. This is certainly her favourite game at the moment and she loves watching and listening to Baa Baa Black Sheep driving the sports car!
Abigail has endured fairly intensive medical interventions during the course of her short life, yet these experiences have certainly not dampened her enthusiasm and zest for life. She is an incredibly strong-willed and determined little girl, who simply loves to learn. As Abigail is due to start school in September, we were anxious for her to be able to use our home computer to learn some basic ICT skills in preparation for Reception Class. We approached NBCS and to our great surprise were offered a large-screen monitor, scanner and printer, plus all the initial software that Abigail would need. As many families I’m sure will be able to identify with, the constant battle to secure funding for our children’s specialist equipment and resources is often relentless and disheartening. NBCS were incredibly helpful, supportive and very knowledgeable. Melanie Anderson-Pike PAGE 6 and 7 CUSTOMEYES Room for a view Fewer than 5% of children’s books are commercially available in alternative formats such as large print, audio or Braille but there are about 24,000 children in the UK with a visual impairment Growing demand In 2008 the NBCS CustomEyes book department grew dramatically, producing 8825 largeprint books in12,500 volumes (one title can take up several volumes once it has been reformatted to a larger font size) for children with a visual impairment. Production more than doubled since the end of 2007. We currently have over 1200 families on our client database and over 460 schools/services. Our catalogue contains a wide variety of books for children and young adults up to 25 but recent investigation showed that although almost 40% of our members are aged 16 - 25 only 16% of the titles in our catalogue are suitable for this age range. The results of our recent customer survey confirmed there is a great need for books for this age range, especially educational texts and A-level revision guides. Since January 2008 we have added over 350 titles to the catalogue but still have 216 waiting on our ‘wish-list’ of titles requested by our members, many of them text books. To fulfil this demand CustomEyes is moving to a larger office space which will enable us to expand and upgrade our publishing operations. Currently production costs are about £50 per book, but they remain on sale to individuals at the recommended retail price, so are heavily subsidised by us. New equipment and software will enable us to reduce our costs and therefore offer a wider range of books to a higher standard and with a much faster turnaround time. New world of books Thanks to NBCS, children with visual impairment took advantage of special book tokens issued for World
Book Day on March 5. All school-age children in the UK were given a £1 token to be exchanged for one of six specially published books or put towards the cost of any title of their choice at a participating bookshop or book club. Five of these new £1 World Book Day story books were republished for children with visual impairment in large print through NBCS’s CustomEyes service during March. Each volume consisted of two stories – read one and flip it over to read another – making a total of 10 stories available to the children. CASE STUDY Thirteen-year-old Leo Jarvis, from Rye in East Sussex, has tunnel vision and found reading for any length of time a great strain on his eyes. But since being introduced to the Harry Potter stories and other popular books in large print through CustomEyes, Leo has regained his confidence. Reading is now much more pleasurable for him and he can read for longer without tiring his eyes. His current favourite is Beast Quest by Adam Blade. Leo’s mum Sarah said: ‘NBCS’s wonderful large-print books helped Leo turn a corner after going through a very difficult time. He’s now got the confidence to start thinking about a career in computers!’ NEW STORIES FOR SPRING Twilight Saga by Stephanie Meyer 4 book series Age Range 16+ Book 1 - Twilight: When 17 year old Isabella Swan moves to live with her father she expects that her new life will be as dull as the town. But in spite of her awkward manner and low expectations, she finds that her new classmates are drawn to this pale, dark-haired new girl in town. But not, it seems, the Cullen family. Bella is convinced that Edward Cullen in particular hates her. He seems determined to push her away until, that is, he saves her life from an out of control car. Bella will soon discover that there is a very good reason for Edward's coldness. He, and his family, are vampires. Book 2 - New Moon: I looked up from the bright red blood pulsing out of my arm and into the fevered eyes of the six ravenous vampires. For Bella Swan, there is one thing more important than life itself: Edward Cullen. But being in love with a vampire is dangerous. Book 3 - Eclipse: As Seattle is ravaged by a string of mysterious killings and a malicious vampire continues her quest for revenge, Bella once again finds herself surrounded by danger. In the midst of it all, she is forced to choose between her love for Edward and her friendship with Jacob - knowing that her decision has the potential to ignite the ageless struggle between vampire and werewolf. With her graduation approaching, Bella has one more decision to make: life or death. Book 4 - Breaking Dawn: To be in love with a vampire is both fantasy and nightmare woven into a dangerously heightened reality for Bella Swan. Pulled in one direction by her intense passion for Edward Cullen and in another by her profound connection to werewolf Jacob Black.
Titchy-Witch Series by Rose Impey The Stray Dragon, The Get-Better Spell, The Wobbly Fang Age Range: Foundation Stage Titchy-witch is only a little witch, but she spells BIG trouble. When she waves her wand WATCH OUT Horrible Histories The Twentieth Century by Terry Deary Age Range 8+ From Charlie Chaplin to Margaret Thatcher, this history book follows the events of the 20th century from the last days of Queen Victoria to the 1990s. Airman by Eoin Colfer Age Range 14+ One dark night on the island of Great Saltee, fourteen-year-old Conor is framed for a terrible crime he didn’t commit. Thrown into prison by the dastardly Hugo Bonvilain, Conor is trapped in a seaswept dungeon and branded a traitor. Horrid Henry Rules the World by Francesca Simon Age Range: 5+ Ten side-splitting stories revolving around Horrid Henry’s school days. TOP TEN Our most popular CustomEyes titles, Spring 09 1 The Boy in Striped Pyjamas by John Boyne 2 Mr Gum/Beast Quest, World Book Day Flip Book 3 Best Friends by Jacqueline Wilson 4 Fantastic Mr Fox by Roald Dahl 5 Iron Man by Ted Hughes 6 Wide Sargasso Sea by Jean Rhys 7 Flat Stanley by Jeff Brown 8 Twilight by Stephanie Meyer 9 New Moon by Stephanie Meyer 10 The Midnight Fox by Betsy Byars PAGE 8 and 9
FAMILY SUPPORT Meeting the need NBCS’s Family Support and Information Service continues to expand in response to everincreasing enquiries
Help from the start NBCS is now widely acknowledged to be the first point of referral for families of children with visual impairments right from the moment of diagnosis. The main national and regional children’s and specialist eye hospitals, including Moorfields and Great Ormond Street hospitals in London, in many cases advise parents to contact NBCS for information and support. Many enquiries also come from health professionals – about 1,350 in 2008 alone – who can discuss technical and medical issues with our qualified specialist staff. Friends of the family Family Support cases incorporate many different aspects of support and information, with the Children’s Services Team working closely with parents, as key workers, in supporting the whole family. In 2008 there were 686 active Family Support cases. This includes 214 new referrals. Growing team On January 1 the former LOOK London charity was merged with NBCS, and continues to operate under the name NBCS London from its offices in Sutton, Surrey. At the same time a new, fully qualified educational advocate and family support officer, Loraine Stewart, joined as Regional Manager for the Home Counties, working with Devika Lambert, Regional Manager for London, and family support officer, Jenny Holder. This means we can significantly expand our support services in the most densely populated part of the country. Knowing the ropes Training – both giving and receiving – is a priority for NBCS. While all our specialist staff are regularly updated on development in such matters as educational and disability support legislation, our resident experts are increasingly being called upon to deliver training. To contact the Family Support Team call 01278 764 770 or 0800 781 1444, or visit www.nbcs.org.uk Mutual support In 2008 we started on our programme of developing a nationwide network of support groups for the families of children with a visual impairment. The aim is to provide opportunities for families to meet others in a similar situation and at the same time to have access to professional guidance and advice tailored to the child’s individual needs. It’s all in the planning National research over the last year has shown that there is a large demand from parents for local support groups in their area. Responding to this demand, NBCS has developed business plans, guidelines and set-up procedures for creating new groups. More than 23 organisations working in the visual impairment sector have been approached to help build partnerships within the project and make sure that once set up the family groups continue to run smoothly with maximum local support. Parent power We are also hoping to encourage parents to take the initiative in setting up and running support groups with help and professional guidance from NBCS. If you would like to be involved with setting up a new group in your area please contact John Ellery on 01278 764780, or email john.ellery@nbcs.org.uk.
ONE GIANT LEAP Crossing over from primary to mainstream secondary school can be particularly daunting for children with visual impairment. The right advice New College Worcester (NCW), a specialist school for blind and partially sighted children aged 11-19, is holding an informal Family Weekend on May 2-3 for any family who has a child with a visual impairment. On the Saturday, the college will be offering presentations to parents to address issues faced by families who are concerned about their child’s transition to secondary school. For the young people there will be a range of activities for all ages, including swimming, drumming, archery, art, football, cake decorating and a treasure hunt. Brothers and sisters are all welcome. NCW Principal Mardy Smith says: ‘Transition to secondary school can be daunting for parents of children with a visual impairment. They’re facing a lot of uncertainty and it’s hard to know what questions to ask and what to look for in a school.’ Parents will hear presentations from the college, NBCS and support organisation LOOK, giving families the opportunity to discuss their concerns with impartial specialists. There will also be an opportunity for parents to join in with the activities later on in the day, including swimming and drumming workshops. Sunday will be an informal day for family fun with a selection of outdoor activities including canoeing, sailing and climbing at nearby Upton Warren Outdoor Centre. Families can choose either to come for the day of presentations and activities on Saturday 2 May (free of charge) or to come for the full weekend with an overnight stay charge of £55 for a family of up to four. For further information about the weekend, contact Annaliese Stanton on 01905 763933 or email astanton@newcollegeworcester.co.uk
PAGE 10 and 11 and 12 FUNDRAISING Soft-centred dragon Millionaire entrepreneur Duncan Bannatyne, one of the stars of BBC2’s long-running Dragons’ Den series, showed himself to be a big softie at an awards ceremony for small businesses at the O2 in London. NBCS was sent a donation from money raised by one of the nominated companies, Bean2Bed, at the O2 X Small Businesses Awards event through its Baby Adoptables game where the winner walks off with a soft toy animal. Mr Bannatyne and his wife Joanne, guests of honour at the ceremony, themselves bought 10 tickets to guess the home city of a cuddly elephant which was won in the end by Kirsty Chuter, of Birmingham.
The elephant had been brought along by Irfan Badakshi, managing director of Birmingham-based Bean2Bed, which had been nominated for the Technology and Innovation award for its ingenious design of beanbags which change into spare beds. Mr Bannatyne said: ‘I am delighted to help such a worthy cause as the National Blind Children’s Society – and the Baby Adoptables game is a great way to raise money for them. It’s a good way for work colleagues to have a bit of fun together by playing the game.’ Irfan Badakshi, of Bean2Bed, said: ‘It is a very novel way to raise money, and something I think every company should get involved with. ‘We leave the toy at Reception and without even realising it the tickets all get snapped up by visitors, customers, trade contacts, pretty much anyone who sees it. And if you take it with you to a business or network-ing event, as well as raising money it makes for a great icebreaker. We are already looking forward to receiving our new toy Bunny for Easter!’ NBCS Chief Executive Carolyn Fullard said: ‘We depend entirely on donations and fundraising initiatives such as the Baby Adoptables as we receive no public funding at all. Without these sources of income we cannot provide our essential services to the estimated 24,000 blind and partially sighted children in the UK, so we are hugely grateful both to Duncan for his support and to companies like Bean2Bed for raising money by joining in with our games.’ New babies There are some new additions to our popular Baby Adoptables workplace fundraising game – a fluffy rabbit and a cuddly bassett hound. Each bespectacled baby animal comes with a game board containing 50 location names. Players pay £1 to pick a place, and the winner takes the animal. To request a game, call Rose on 01278 764 751 or go to the NBCS website at www.nbcs.org.uk Christmas gift Some Christmas cheer has come early in the year, thanks to the Blatchington Court Trust which has made a donation of £4,000 towards the cost of NBCS’s Family Weekend and Christmas House Party. The party is held at the Cliffden Hotel, Teignmouth, Devon over the last weekend in November. To book a place call Sally Freeman on 01278 764775, or email sally.freeman@nbcs.org.uk The Blatchington Court Trust, a long-standing supporter of NBCS, is committed to making grants to meet the needs of young people with a vision impairment. www.blatchingtoncourt.org.uk Bogus collectors beware Police forces across the country are clamping down on thieves taking bags of clothes, shoes and handbags left out to raise money for National Blind Chrildren’s Society. Textile recycling company Care2Collect (formerly I&G Cohen) set up the initiative after an unmarked van was spotted by National Blind Children’s Society collectors in Walsall taking charity bags. Police traced the van to a residential address and seized 137 stolen bags and a van. The two men involved were arrested and charged. Care2Collect’s top Bogus Busting tips
• Is there a company/charity reference number? Does the phrase ‘registered charity no’ apear before the number? If you are unsure, this number can be verified with the Charity Commission (0845 3000 218). • Is there a contact information number on the bag? If so, is it a mobile phone number? Most reputable companies have a commercial number, such as a 0845 or 0870. • Is there a company website advertised? It is always worth checking this out, as it will also provide you with information on how your donations will be used and who will benefit from them. • Are the collection vehicles clearly marked? Do the drivers carry identification? Do not be afraid to ask these things, or to approach any collectors to ask them for this information. You have every right to know that your donations are going to the right people. • Does the leaflet/bag state whether the collection is for a charity or a commercial company? If the information presented is a bit vague, it may be worthy of further investigation. Going nuts for NBCS Long-standing fundraising partner ChariSnack has brought a recession-busting £300,000 to NBCS through its healthy snack franchises. The company makes a donation for every ChariSnack and Sweet Support product sold from self-service snack boxes and vending machines in hundreds of companies, schools and other organisations across the country. Healthy snacks helping to achieve this lip-smacking total include rice crackers, mixed nuts and fruit, and chocolate-coated peanuts. The introduction of new slim-line vending machines are adding to ChariSnack’s winning formula of making a successful business idea bring much-needed funds to NBCS. Sam crosses the pain barrier ‘My name is Sam Groves and this is me about 15 minutes after finishing the Berlin marathon. At this point the pain I had experienced for the previous 60 minutes had completely subsided and was replaced by a wonderful feeling of accomplishment. I had achieved the two goals I had set out to achieve six months earlier: I had raised over £1,000 for NBCS and I had completed the marathon in less than four hours. ‘One thing that struck me during the six months prior to the marathon was the generosity not only of my friends and family, but that of people who I didn’t know as well. When friends of friends started coming in with sponsors, the task of raising £1,000 suddenly became a lot less daunting and allowed me to focus on my training. ‘Running with 40,000 other people is quite an experience in itself, but when you begin to think that the majority of these runners are raising money for their chosen charities, you also begin to think about the difference that money is going to make to people’s lives. That not only helps you get to the finish line, but it also makes you realise that all those runs when it was cold, wet, and miserable were completely worthwhile.’ Good luck to our runners
More than 50 runners are supporting NBCS in this year’s Flora London Marathon. We rely hugely on them to fund our children and family services and wish them all the best of luck in the race.
Challenging times Our supporters are having a very busy and energetic time raising funds for NBCS. Saintly bikers The first Christian martyr in England and the patron saint of Wales are the links in a crosscountry cycle ride with a difference. The Hertfordshire town named after St Alban and St Davids in South Wales are the start and finishing points for the 300-mile Two Saints Challenge for St Albans friends Michael Keaveny and Stephen Usher. They are training hard for the four-day bike ride at the end of April, covering about 75 miles a day, to raise money for NBCS which Michael says has been very supportive of his two-year-old daughter Aoife, who has a visual impairment. He said: ‘We were inspired by Ewan McGregor and Charley Boorman, in The Long Way Down, a 15,000-mile motorbike ride from the UK to South Africa. It’s a totally different experience, but some of the basic ideas are there, two riders, two bikes and an open road. We also like the idea of linking up the Two Saints but, most importantly, it gives us an opportunity to raise money for a very worthy cause. ‘NBCS has been a great support right from the beginning and has complemented the excellent support we already receive from local services. ‘Having met other families in Hertfordshire and beyond, I know they make a real difference to children who are severely visually impaired. As a charity, they rely on donations to continue the critical work they do and I felt it was important to try to help them.’ To find out more about the Two Saints Challenge or to support Michael’s fundraising efforts, visit www.2saintsride.co.uk
PAGE 13 FOCUS ON THE REGIONS: the North Glenys Critchley, NBCS Education Manager (North) strongly believes in the importance of building effective relationships with the children and families who need her support What is the area you cover from your office in Southport? I cover the whole of the North of England from Wolverhampton to the Scottish borders. Scotland is my area also and so too is Northern Ireland and North Wales. I have visited as far as the Outer Hebrides to date. I also travel the rest of the country, when necessary to attend meetings, attend training days and appear at tribunals. I am a firm believer in the children and their families having activity days and enjoying family weekends, and I attend these whenever possible. They give me a chance to meet the parents informally and also to tell them of other NBCS services.
How are cases referred to you? Cases are referred to me by word of mouth from other parents, schools, peripatetic visual impairment teams and other charities and organisations supporting families of children with visual impairments. How do you link in with NBCS as a whole? I am an Ambassador for NBCS in the north. I refer families to my colleagues and team members if appropriate, for example for information on activity days, family weekends, ICT, family support issues and CustomEyes books. I attend regular meetings with the Children’s Services Team in Birmingham. What is the main focus of your work? My main focus is advocacy, working with families and covering any education issues they might have. I am a qualified teacher of the visually impaired and have been a teacher most of my life. For the last nine years I have also been an educational advocate. I offer support and advice, help with the statementing procedures, attend meetings, liaise and mediate with education authorities and other professionals to gain positive outcomes to families in respect of their children’s educational needs and provision. Why is it important that NBCS has accessible regional offices? To be on hand and within reasonable travelling distance. Meeting the children and the parents is very important in my role as it helps to establish relationships more easily. It is also very important to be able to offer local knowledge of schools, colleges and any out of school activities. CASE STUDY A Before my daughter Lizzie was born, I had known only one person in my life who was blind, my aunt. By coincidence, I had always intended that my daughter be named after her, because she had been strong, independent, and so generous that whole families owed her a debt of gratitude. The only thing in her life that she had no patience for was her own blindness. My daughter, who was born with the gene for albinism positively shining in her hair, has inherited much from my aunt. She is strong and independent too, and so curious about the world that her eyesight does not seem to hinder her as much as it might. Her first four years have been a revelation to me and I am not only immensely proud of her, but also fascinated by her inbuilt wisdom and strategies for overcoming her visual impairment. I suspect that having a blind or visually impaired child means lifelong learning for parents, but it is a small price to pay for a child who looks like an angel and works like a Trojan. Mary McDonach lives in Paisley, Renfrewshire, is a regular contributor to www.wonderbaby.org, a support website for families of children with visual impairment
PAGE 14 RECREATIONAL ACTIVITIES
Our recreational activities programme keeps on growing – we look back at a couple of recent events The sun shone Thirty-eight of us thoroughly enjoyed the Llandudno family weekend in March at the Belmont Hotel. There were 16 parents or carers, 19 children and three staff. From 4pm Friday until 2pm Sunday the mood was ‘hectic but relaxed’. After a lovely dinner on Friday evening there was the chance to meet up with old friends and, for many, it was the chance to meet new friends. We played introductory getting-to-know-you games which was great fun with everyone joining in. Of course a compulsory game of bingo had to be played, if only to quieten everyone down again. After a great breakfast, the coach came to pick us up for a very scenic journey down the coast to Greenwood Forest Park. There, two other families joined us for what was to be a fabulous day on the rides, climbing frames and the boats. Returning to our hotel we had just enough time to change into our fancy dress outfits for the evening’s entertainment. The outfits were really good and as always it was very difficult to find a winner. The best part of the fancy dress is always being able to dance, sing, play on the karaoke in disguise and really let yourself go. The dance floor was full for the whole of the night. It really is good to see everyone having such a good time. Sunday was glorious weather again and gave us a chance to wander around Llandudno, stroll on the beach or down the pier before another great lunch before departing for home. As always, all the parents commented on the importance of weekends like this as sometimes it is their only chance to meet up with others facing similar challenges, and how fantastic it is for the children to be able to meet, play and enjoy time with other children with visual impairment. Lots of advice and invaluable information are exchanged and often long term friendships are established. A thoroughly enjoyable time and… the sun shone! Glenys Critchley Education Manager (North) EASTER TREAT On Sunday 5 April NBCS held a grand Easter party at the University Arms Hotel in the historic city of Cambridge. The party took place in the lavishly decorated ballroom of the hotel in the heart of the city, in the year that Cambridge University celebrates its 800th anniversary. It started at 2pm when the children and their families were met with a welcoming drink. Then until 5pm they joined in the party fun, with an entertainer, a prize Easter bonnet parade and buffet tea, all courtesy of NBCS. The activities and games were designed for the whole family to join in, including siblings, and provided an opportunity to share experiences in a relaxed environment. The children agreed they all had a wonderful afternoon.
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FORTHCOMING ACTIVITIES Fun ways to new experiences and challenges to grow independence and make new friends Show time NBCS took 12 children with visual impairments and their families to see the audio-described performance of Peter Pan the pantomime at Wolverhampton Grand Theatre on Sunday 4 January. The families were met at the theatre by NBCS Activities Development Officer Sally Freeman and trustee Vidar Hjardeng, with theatre manager Clare Pomeroy, audio-describer Anne Hornsby, and Karran Collings from the theatre. After a behind-the-scenes tour the children went up on stage to hear about the set, feel the costumes and imagine what it would be like to perform before such a large audience. After the tour they went upstairs for lunch, with hot and cold drinks and chocolate bars provided by NBCS where the children and their families had a chance to socialise. Headsets were handed out so that the children could listen to the audiodescription of the show. At the interval there were free ice creams provided by NBCS. The children and their families all loved the day. Among them were Jayne and Olivia Marsh, who said: ‘We had a great time testing the props and the audio-description was very good. We laughed our socks off at the show.’ Diary dates 09 Sunday 14 June and Sunday 9 August SPACE Centre, Preston. The ‘Soft Play Area within a Controllable Environment’ is the largest multi-sensory room in the UK. Here parents and carers can meet other families of children with visual impairment and their siblings while enjoying the soft play facilities, specialist equipment, a slide, ball pool, hammock, bubble tubes, water bed and interactive tactile toys within a specialist lighting environment. Booking is essential. To join one of the NBCS days at the centre, call Glenys on 01704 562750 or 07779 320661, or email glenys.critchley@nbcs.org.uk Sunday 7 June Day out at Paignton Zoo, Devon. There are 75 fully accessible acres to wander through at the zoo, watching lions, monkeys, crocodiles and elephants – to name just a few of the animals. In the afternoon NBCS guests will have a private viewing of the Animal Encounters show, with a chance to get close to the birds and a hands-on session for the children. Refreshments on arrival and a hot and cold buffet lunch are included in the treat, with ice creams in the afternoon. The zoo opens at 10am and closes at 5pm. Costs: Children with a visual impairment plus one parent or carer are free, £4 for other immediate family members. Thursday 27 August Day out at the Thames Valley Adventure Playground, Maidenhead, Berkshire.
A family day out for children with disabilities and their families from 10.30am to 3.30pm. The playground includes a large indoor play area with soft play, a fully equipped arts and crafts room, multi-sensory white room, dressing-up room, computer room and quiet conservatory area. Outside there is lots to do, including special swings with bucket seats and harnesses, bikes, go-karts, a castle play area, music structure, toddlers’ area and an aerial runway with bucket seat and full harness. More details can be found on the adventure playground’s website at www.tvap.net Costs: Children with a visual impairment plus one parent or carer are free, £2 for other immediate family members. Drinks are provided but families bring their own picnic lunch. The day is suitable for families with children under the age of 16. Booking for both these days out is essential. Call Sally Freeman on 01278 764775 or email sally.freeman@nbcs.org.uk PAGE 16 all photos and captions.