Summer 2016• •Issue Issue3541 Winter 2014
towards a world without barriers...
Gettintowards g the a world w right support , right from the start Jo in our campaig n page 8
towards a world without barriers...
towards a world
towards a world
Combatting bad behaviour towards a world without barriers...
Kerri’s confidence boost
NEW SPECIALIST PROVISION OPENING 2016 Following the recent, sudden closure of the Royal School for Deaf Children Margate, a number of Local Authorities and parents have contacted Hamilton Lodge School and College requesting placements.
Save the date of our
ANNUAL SUMMER FETE AND BIKE RIDE
in your diary now – 11th June 2016 and email with enquiries to emma.daniel@ hamiltonlsc.co.uk
FREE ENTRY OPEN TO ALL
We have already been able to accommodate some new students into our main school as our education and our school life is already fully accessible to them. Some of the prospective sudents require extra care and support. To accommodate these students we are developing a new Specialist Provision for education and care offering the right expertise and environment. This will be fully open by September 2016. If you would like to meet with me or organise an assessment for your child to be considered for this provision please do contact me by telephone 01273 682362 or email david.couch@hamiltonlsc.co.uk David Couch – Principal
HAMILTON LODGE SCHOOL & COLLEGE EDUCATION & CARE FOR DEAF STUDENTS FROM PRIMARY TO F.E.
HAMILTON LODGE, WALPOLE ROAD, BRIGHTON, EAST SUSSEX BN2 0LS
Telephone: 01273 682362 Fax 01273 695742 Minicom: 01273 682362 Email: admin@hamiltonlsc.co.uk www.hamiltonls.co.uk
@hamiltonlodge
HamiltonLodgeSC
hamiltonbrighton
Registered charity in England: Hamilton Lodge (Brighton) no. 307066. Registered in England company no. 544254.
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28 Helping schools understand deafness
Campaigning for the best support right from the start
36 Technology for independent living
Hello... We’ve been celebrating the 10th anniversary of the newborn hearing screening programme, which has helped so many parents find out at an earlier stage that their baby was born deaf. This means they can receive support as early as possible. The quality of this support can be crucial to a deaf child’s development, so we’ve launched a new campaign to ensure the best quality support right from the start. See page 8 for details. If your child’s school is planning any end of term trips then have a look at our tips on how to make sure your child can be fully included on page 34. We also have some parent advice on how to support your child’s school to understand their deafness on page 28. The summer holidays are a great time for your child to try out a new hobby or activity to boost their confidence, like Charlotte on page 20 who was transformed by horse-riding. You can find organisations near you that have signed our deaf-friendly pledge at www.ndcs.org.uk/me2. Enjoy the summer and happy reading.
Karen Harlow, Editor email: magazine@ndcs.org.uk
NDCS depends almost entirely on generous support from individuals and organisations. The public is responsible for 95% of our income, and without this we wouldn’t be able to support families of deaf children and young people. See pages 10–11 for more information on supporting NDCS. Publisher: Emma Aldridge • Editor: Karen Harlow • Designer: Jenny Heylin-Smith • Production Manager: Phillip Barros • Distribution: Maria Piazza Advertising sales: Anne Marie Fox, Landmark Publishing Services, 7 Adam Street, London WC2N 6AA. Tel: 020 7520 9474. Email: amf@lps.co.uk Printing: Printed in the UK by The Magazine Printing Company www.magprint.co.uk NDCS Families is published by the National Deaf Children’s Society (NDCS). NDCS is a registered charity in England and Wales no. 1016532 and in Scotland no. SC040779. Opinions in this magazine do not necessarily reflect the policies and views of NDCS. NDCS supports families to make informed choices and no one option will work for all families. This magazine highlights some of these options. For further information, see our website or call our Freephone Helpline. Advertisements do not necessarily imply endorsement by NDCS. All rights reserved. Unauthorised reproduction in part or whole is prohibited without written permission. Photographs and artwork are accepted on the basis that NDCS and its agents do not accept liability for loss or damage to them.
www.ndcs.org.uk/livechat • 0808 800 8880
Contents Summer 2016 • Issue 41
NDCS
4 News & views 7 Comment 8 Campaigning 10 Fundraising
Children, young people and families
13 Share and support 15 Sounding off! 17 Our superstar 18 Early years A difficult decision 20 Primary years Charlotte’s release 22 T ransition years Worth the battle 24 Young people What’s important to deaf young people today? 26 Additional needs COVER Combatting bad behaviour 28 H ow do I...? ... support my child’s school to understand deafness?
Information, services and events 31 Roadshow 33 Ask the expert 34 The school year 36 Technology 38 Local groups 40 Reviews 42 Our resources 44 What’s on?
Role models
46 When I’m a grown-up Get in touch NDCS Families, Ground Floor South, Castle House, 37–45 Paul Street, London EC2A 4LS Telephone: 020 7490 8656 (voice & text) Fax: 020 7251 5020 Email: magazine@ndcs.org.uk Website: www.ndcs.org.uk Freephone Helpline: 0808 800 8880 (v&t) NDCS Families • Summer 2016
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news & views
Follow NDCS on Twitter: www.twitter.com/NDCS_UK www.twitter.com/NDCS_Cymru www.twitter.com/NDCS_Scotland www.twitter.com/NDCS_NIreland
NDCS on Facebook: www.facebook.com/NDCS.UK www.facebook.com/NDCSScotland
You’re invited… Raising the Bar masterclass showcase 19 June, mac Birmingham
g n i s i Ra the
You’re invited to come and watch the talented winners of this year’s Raising the Bar event perform live on stage. Following the success of last year’s competition to find deaf music and dance stars, we were delighted to run the event again – and with the addition of drama, it’s even bigger this time! This year’s winners will showcase what they’ve learnt from their workshop leaders, who are from the hugely successful Music and the Deaf, Deaf Man Dancing and Deafinitely Theatre, and there will also be an opportunity to hear from some of last year’s winners and see how far they’ve come since their debut. Tickets are free and all the family are welcome but seats must be reserved. Communication support will be provided. Check out www.ndcs.org.uk/events or email me2@ndcs.org.uk for more information.
Tell us your story! Telling politicians and others in positions of authority about real-life experiences and stories can make a big impact in campaigning for change. If you’re a deaf young person or a parent of a deaf child living in Wales, sharing your story could help us make positive changes for deaf young people. Whatever your experience, if you’re willing to share it please get in touch. For more information please contact campaigns. wales@ndcs.org.uk.
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NDCS Families • Summer 2016
Want to know more about your child’s rights? We’re developing a programme, in conjunction with the Council for Disabled Children, about the rights of families with a deaf child when it comes to health, education and social care. We’re looking for parents and carers to take part in the development of the new programme starting this summer. We’re keen to hear your views on what should be included to meet your needs. If you’re interested in taking part then please contact carla.rose-hardman@ ndcs.org.uk for more information. No experience needed – you just need to be the parent or carer of a deaf child.
Deaf tip awarenessild’s
h Get a deaf c fore attention be y waving, speaking – tr table knocking a eir or tapping th shoulder.
National Deaf Children’s Society Scotland is now on Facebook Check out our new page for information on our work in Scotland, resources and upcoming events. www.facebook.com/ ndcsscotland
Angus’s expedition
Angus, who is 17 and in his final year of high school in Fife, Scotland, has been selected to go on his first expedition to Nepal this summer, organised by Raleigh International. Angus was born with moderate to severe bilateral deafness. Volunteering abroad is something he’s wanted to do since he was young. He’ll be helping to re-establish access to fresh water, sanitation and hygiene for earthquake victims in the Gorkha and Makwanpur regions. We would like to wish Angus the best of luck! 0808 800 8880 • www.ndcs.org.uk
NEWS & VIEWS
> A big decision
> Charlotte’s release
The hobby that transformed her confidence
Find out why mum Corey decided against implants for daughter Una page
Helena makes a splash!
> Worth the battle
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Helena, who is deaf, swam the length of the English Channel, a total of 22 miles, to raise money for us because she wants to make sure that every deaf child has a brighter future. She says: “I’m a swimmer, not a cyclist or a runner, so I was ecstatic to be able to fundraise for the National Deaf Children’s Society with a swim challenge. “To be honest, I had huge fun fundraising wearing swimwear on the tube. People were incredibly generous!” If you also enjoy swimming and would like to fundraise for us then have a look at our Ready Steady Swim challenge at www.ndcs.org.uk/swim.
page
20
Read why Alison is glad she fought for Disability Living Allowance for daughter Leah page
22
Standing up for deaf children’s right to education Jessica and Samina (both 15) from Loughborough won a competition to become 2016 Young Ambassadors for the Send My Friend to School campaign. As part of their role, they travelled to Kenya with our international arm, Deaf Child Worldwide, on a fact-finding mission to uncover some of the issues facing deaf children in accessing education. Throughout the week they met with deaf children, teachers and government officials to better understand the situation and what needs to be done to reduce the millions of deaf children still not getting a quality education worldwide. Jessica and Samina are encouraging pupils and teachers across the UK to take part in the day of action on 1 July to speak out for the tens of millions of children who are missing out on their right to education. You can find out more about their trip in the news section of www.deafchildworldwide.info including a video of the week. Sign up for this year’s campaign at www.sendmyfriend.org/takeaction/day-action/. @DeafChildWW
New products added to our Technology Test Drive loan service The Sonic Alert Sonic Traveler is a new vibrating alarm clock which has the usual loud volume and strong vibrating pad. Its unique feature is a USB port which can be used to charge a smartphone or tablet overnight – we think this’ll be really popular with deaf teenagers. Many families have asked to borrow cordless headphones, so we’ve now added Geemarc CL7400BT headphones, which are Bluetooth compatible and ideal for use around the house or out and about. The sound quality is good, the volume is loud and you can also alter the volume in each ear. Find out how you can borrow these or other models of alarm clocks and headphones, from us at www.ndcs.org.uk/tech_drive. www.ndcs.org.uk/livechat • 0808 800 8880
NDCS Families • Summer 2016
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Young Authors and Artists in Northern Ireland Have a look at some of these amazing entries to our 30th annual Young Authors and Artists competition in Northern Ireland. The competition is open to deaf children aged 4–18 and this year’s theme of Monsters and Magic captured their imaginations, resulting in 140 entries from across Northern Ireland. The prize day was held on 9 March in Belfast City Hall and was attended by all of the children who won a prize, their parents, siblings and teachers. Guest speaker Holly Lane inspired the children with her own experiences as a deaf child, amazing travel adventures and fantastic work roles, including providing sign language translation for Channel 4’s Hollyoaks. It was a fantastic day and a wonderful opportunity to celebrate the talent and creativity of Northern Ireland’s deaf children and young people.
Breaking down barriers to employment Thanks to funding from the Department for Education, we’ve created a range of exciting new resources to help break down barriers to employment for deaf young people. We carried out research with deaf young people, parents, employers and professionals to find out which barriers these groups thought would stop deaf young people getting a job. As a result of our findings, we created videos, print and downloadable resources for deaf young people, parents and employers which can be found at www.ndcs.org.uk/ breakingdownbarriers. 6
NDCS Families • Summer 2016
Update on Disabled Students’ Allowances (DSAs) The Government has issued new guidance on which types of notetakers will be funded by Disabled Students’ Allowances (DSAs) in 2016/17 for higher education students in England. Read the latest at www.ndcs.org.uk/DSA. 0808 800 8880 • www.ndcs.org.uk
COMMENT
Looking to the future How can we make the most impact on the lives of deaf children and young people in the next five years? We’ve been talking to families, and the professionals who work with you, to find out what makes the biggest difference to deaf children and young people, and how you want us to focus our resources in the next five years. You may have completed our survey or taken part in a focus group in the spring. Your feedback will continue to inform our trustees’ decisions on our new strategy, to be launched in 2017. This will set long-term goals to guide our work. Taking into account your feedback so far, and what we know from our research, for the next five years we believe we’ll make the most impact by focusing on: • improving the availability, design and quality of national and local services • improving the development of deaf children and young people’s language and communication skills
• supporting the growth of deaf children and young people’s independence and improving transitions into adulthood. You’ll see this focus emerging in our new and established services, and in our information, influencing and campaigning activities. Thank you for your involvement to date. As our plans develop we’ll provide more details. You can find the latest information at www.ndcs.org.uk/strategy2017.
Susan Daniels OBE Chief Executive
Join our Trustee Board The National Deaf Children’s Society is the leading charity dedicated to creating a world without barriers for deaf children and young people. We’re currently looking for two people to join our Trustee Board. The trustees provide leadership and set the direction of our charity, working closely with the chief executive and her team who implement the strategy. The majority of positions on the Trustee Board are reserved for our members who are parents or carers of a deaf child or young person. Other trustees are appointed to bring specific skills and experience onto
the Board. These co-opted trustees don’t have to be a parent or carer of a deaf child. We currently have two vacancies on the Board, one for a parent or carer and one for a co-opted trustee. Trustees should be able to think strategically, operate dispassionately, challenge constructively, and make decisions in a team. The successful applicants are likely to have senior, large-scale strategic-level experience in either international development, children’s services in the UK (operating in a regulatory environment) or income generation (fundraising and/or commissioning).
We welcome applications from all sections of the community. This is a voluntary position but we’ll reimburse all reasonable expenses. Visit www.ndcs.org.uk/trusteeapplication for full details and an application form. The closing date is Friday 26 August 2016.
www.ndcs.org.uk/livechat • 0808 800 8880
NDCS Families • Summer 2016
Registered charity: England and Wales (1016532) and Scotland (SC040779)
Have you got the passion, commitment and strategic foresight to help us create a world without barriers for every deaf child?
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t i t e g o t d e Why we ne
Right from the Start Help us celebrate 10 years of newborn hearing screening in England and join our campaign to improve early years support. 2016 marks 10 years of universal newborn hearing screening. Being heavily involved in the campaign for a screening programme, we think this is something well worth celebrating and, according to our survey in March, you agree. “It was a godsend to have our son diagnosed early in life, as it meant he got hearing aids by the time he was three months old. This meant he didn’t miss out on the crucial first year of hearing and making sounds. I really believe that without newborn screening, we wouldn’t have noticed his deafness until he was significantly behind his peers.” The programme has removed a major barrier to deaf children’s development by making sure that deafness is identified as early as possible for children born deaf. All babies born in the UK are now offered a routine screen for signs of hearing loss, in hospital or within the community, shortly after birth. When babies don’t respond as expected they’re referred for assessment and normally receive a diagnosis within four weeks. 8
NDCS Families • Summer 2016
Before the newborn hearing screening programme, children born deaf were often not diagnosed until age three or older, well past the critical ages for developing language and communication. Research has shown that an undiagnosed deaf child at age three won’t know more than 25 words, compared to 700 in a hearing child of the same age. “Newborn hearing screening is a superb programme – I wish my son had been born after it was implemented and we’d known about his deafness sooner. I wish even more that we’d been supported by a Teacher of the Deaf from diagnosis onwards.” But, thanks to hundreds of you who took part in our survey earlier this year to share your experiences of newborn hearing screening and early years support, we know that screening and early diagnosis is only the start. Not getting high quality early years support is also a major obstacle to a deaf child’s progress. You told us this barrier remains in many places across the country. Government attainment figures also suggest that too many deaf children are not getting the support they need with nearly two-thirds of deaf children (59%) in England failing to achieve five good GCSEs. 0808 800 8880 • www.ndcs.org.uk
CAMPAIGNING So 10 years after the full roll out of newborn hearing screening across the UK, there’s still lots to do to ensure high quality early years support is in place following diagnosis. This is why we launched the Right from the Start campaign in May. “…support needs to be given as early as possible. Without the Teacher of the Deaf and audiology support we’d be at a loss until school age as there’s no real support for pre-schoolers unless you know where to look. The early support means that the child can develop as quickly as a hearing child without any developmental delays.” We’re calling on the Government, local authorities and health services in England to work together and make a commitment to make sure the best support possible is in place as soon as a child is diagnosed as deaf.
This commitment should include:
1
Protecting audiology services so deaf children get the hearing aids and implants they need.
2
Investing in specialist Teachers of the Deaf so that parents get expert advice and support on childhood deafness.
3
Making sure the communication needs of all deaf children and their families are supported and met, whether that be through sign or spoken language.
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5
Provision of additional equipment – such as radio aids – to help deaf children in situations where extra amplification is needed and so that parents can support their child’s language and communication. Ensuring that parents are able to access childcare which meets their deaf child’s needs.
“Without the support my daughter and my family have received life would be so different. I don’t think she’d attend a mainstream pre-school and she wouldn’t be able to communicate her needs. We’re very lucky to have an amazing group of professionals working with us. I know so many people are not so lucky.”
www.ndcs.org.uk/livechat • 0808 800 8880
To find out how you can support our campaign and to download the Right from the Start campaign report visit www.ndcs.org.uk/rightfromthestart. The recent elections for the Scottish Parliament, Welsh Assembly and the Northern Ireland Assembly also gave us a great opportunity to keep campaigning for better support for deaf children. Visit www.ndcs.org.uk/campaigns for more information about our work in the nations.
We can help… We have lots of information on our website to support you with every stage of your child’s development, including resources on childhood deafness, developing language and communication, and technology. www.ndcs.org.uk/family_support If you have questions or concerns about the quality of early years support your child is receiving then contact our Freephone Helpline.
NDCS Families • Summer 2016
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Gold medal Olympic fundraising The Rio Olympics are now only a couple of months away and they offer a brilliant opportunity to fundraise for us. Whether you love watching sport or taking part in it, there are lots of ways to get involved. Top 10 Olympics-inspired fundraising ideas 1. Office sweepstake Get your colleagues involved and run a sweepstake in the office. Pick a country and make a donation. The person with the country that has the highest medal tally wins half of the money, with the remaining funds donated to us.
2. Run in fancy dress Interested in running for us? Sign up for the Royal Parks Foundation Half Marathon and go all out by wearing a wacky costume to really stand out!
3. Office Olympics • Shot-put – throw a rubber into a nearby bin. Closest throw wins. • Badminton – screw up old paper into a ball and use your mouse mat to bat it back and forth across the desk with a colleague. • Javelin – make a paper aeroplane to see who can throw the longest distance. • Archery – Grab a rubber band and take aim at a target on a nearby wall to see who has the best aim. Make a donation to compete against your colleagues or why not have a cross department team challenge?
4. Press-ups Challenge yourself to do as many press-ups as you can in one minute.
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NDCS Families • Summer 2016
Get your friends involved and make a donation to challenge each other.
5. Sponsored trek
10. Cycle 100 miles Take part in Prudential RideLondon – Surrey 100 and cycle 100 miles around London.
Take part in one of our fantastic treks, or organise your own sponsored walk.
6. Old-school sports day Charge people to compete in your old-school sports day. Egg and spoon races, sack races, three legged races... need we say more?
7. Sports dress-down day Ask your colleagues to make a small donation to have a sports lycra inspired dress-down day at work. See who can find the brightest cycling shorts and the loudest tops.
8. Olympic-themed party Organise a party for your friends and in return for a £5 donation you can treat them to Olympic-themed cakes, cocktails, games and more.
9. Ready Steady Swim Choose from our list of suggested distances or pick your own challenge: Bronze – 200m Silver – 800m Gold – 1,000m
For more information on any of these ideas, or to get your free fundraising pack please contact Laura in the Events team on ndcschallenges@ndcs. org.uk. 0808 800 8880 • www.ndcs.org.uk
FUNDRAISING
Support a child like Alex Many of the vital services we provide for deaf children and their families are funded by supporters generously leaving us a gift in their Will. Gifts in Wills provide support for deaf children like Alex long into the future. Alex was born deaf and his childhood started out lonely and challenging because he couldn’t take part in the activities that other children take for granted. Alex was struggling to keep up at his local school and was finding it difficult to join in due to lack of deaf awareness. Angela, Alex’s mum, turned to us in the hope that we could help him secure a place at a school for deaf children, where she felt he’d be able to make friends more easily and grow in confidence. One of our support officers was able to fight for Alex’s needs until the battle was finally won. Alex started at his new school in September and has already begun to flourish. Angela says: “Thanks to the National Deaf Children’s Society, Alex is at a school for deaf children where he’s really starting to thrive. He’s making friends and enjoying lessons. Alex is now a cheeky, self-assured boy who is fast becoming a teenager. That’s why the National Deaf Children’s Society has such a special place in my heart – and why I’ve chosen to include a gift to this charity in my Will. I believe every deaf child deserves the support Alex has been so fortunate to receive – now and in the future.” You can make a huge difference to the lives of deaf children. A gift in your Will would give vital support to future generations.
For more information on leaving a gift in your Will please contact Rose on rose.urbanovich@ndcs.org. uk or 020 7014 1102.
www.ndcs.org.uk/livechat • 0808 800 8880
Could your business be a partner for change?
Want to market your company and make a difference to deaf children’s lives? Our new sales and marketing package could be just what your business needs to increase sales and grow your profile.
To find out more contact Matthew Coleman on matthew.coleman@ndcs.org.uk or 020 7014 1150. NDCS Families • Summer 2016
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Roger - hearing more of what you want PHONAK ADVERT
The Phonak Roger Pen is a discreet, lightweight device that can be used in a variety of situations such as the classroom, at home, social environments and to connect to a variety of multimedia devices. Its simplicity allows you to take it out of the box, pair it up and beneďŹ t from its functionalities. Our latest products can help your child connect to friends and family anytime, anywhere. To purchase these products please contact Connevans or Action on Hearing Loss. Or trial these products through the NDCS Technology Test Drive service, to ďŹ nd out more go to www.ndcs.org.uk/technology.
SHARE AND SUPPORT
Share and support
Recent discussions: Meningitis Ear wax Unilateral deafness
Many families with deaf children use Facebook and Parent Place, our online discussion forum, to share experiences and advice. Do you want to share your ideas, opinions and concerns with other families with deaf children? Have your say at www.facebook.com/NDCS.UK and www.parentplace.org. Topic: wearing one hearing aid and one cochlear implant My daughter is in Year 5 and has a deteriorating hearing loss. One ear is now a lot worse than the other and I’m considering a cochlear implant. I don’t want to implant both ears, but would love to hear people’s experiences. <<<Facebook user>>> My son is five. He’s profoundly deaf and was implanted on one side a year ago (he wears a hearing aid in the other ear). It’s made an amazing difference to his life – his speech has come on brilliantly and he can hear us when we’re in a different room. <<<Facebook user>>>
My son is profoundly deaf and we were offered two cochlear implants. We decided to go for one as we didn’t want to risk losing his natural hearing when there was a chance he may not take to implants. He was already getting a lot from his hearing aids so we felt that having one of each was the best of both worlds. <<<Facebook user>>>
My boys both have a hearing aid and an implant. One son is very reliant on the implant and only recently started wearing his hearing aid again. The other prefers his hearing aid to his implant but wears both every day. <<<Tamsin Coates>>> My daughter had her implant when she was in Year 6. It helps her to hear quieter sounds and localise where they are coming from. She adapted really well to hearing differently with the implant – I wish we had pushed for it years before. <<<Bethany Ryan>>>
My son has a cochlear implant and a hearing aid. He has auditory neuropathy and they didn’t know if the implant would be successful. It has worked beautifully and in hindsight I wish we’d had both done. Children who are implanted through two operations often prefer their first implant and it can take them a while to adjust to the second. <<<Facebook user>>> I’m profoundly deaf in one ear unaided, and severely deaf in the other ear and use a hearing aid. I managed to go to school, pass all my exams and have clear speech and this was entirely with the use of lip-reading. <<<Carol-Anne Govan>>>
Find out more about hearing aids and cochlear implants on our website at www.ndcs.org.uk/hearingaids and www.ndcs.org.uk/cochlearimplants.
www.ndcs.org.uk/livechat • 0808 800 8880
NDCS Families • Summer 2016
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Reg. Charity No. 1062507
royal deaf school derby We help them progress through 17 key stages.
Each year that a young deaf learner studies with us is a key stage in their personal development. So whether three or nineteen years old, we provide an environment where they know they can aim higher. And achieve more. We value both English and British Sign Language and are committed to the best level of support in the classroom and in residence. All of which helps our school to gain such high scores in the Value Added Performance Tables. For more details on day and residential learning contact us on 01332 362512 (voice/text). Royal School for the Deaf Derby, Ashbourne Road, Derby DE22 3BH. Email: enquiries@rsdd.org.uk
www.rsd-derby.org
TIGER MOTHER
Sounding off! Hayley is enjoying her new job and is experiencing the real world of work – but can she stand the heat of the kitchen?
Sunday night, waiting in the car. Here she comes, emerging from the dim light cast from the pub windows and climbing into the car. She’s happy, cheeks flushed from a hectic night in the kitchen, looking very professional in her black mandarin collar uniform shirt. Hayley has been in her element in her new job. She’s a part-time kitchen assistant in a fine dining pub. On busy nights it’s pot washing and clearing up, on quiet nights the two chefs let her help with the food preparation so she can learn her trade. It’s a great job to go with her college course in hospitality and catering; the students are expected to find a part-time job to build their experience and supplement their college skills. The pay’s not bad either, and the girl is rather partial to earning money. I have wondered before now whether Hayley’s chosen career in catering will pose problems. A commercial kitchen seems to be a very noisy, hectic place with challenging acoustics: pots and pans clattering, food preparation equipment making a racket, blending, mixing and chopping, cooking food hissing, bubbling and crackling, and stressed staff under pressure, too busy to think about deaf awareness. There’s likely to be no time in the heat of the moment to make sure they turn to face a colleague with hearing loss in order for them to be able to lip-read. It’s something that’s been an undercurrent of concern but of course I’ve never voiced my worries to Hayley. Where there’s a will there’s a way and I’m sure there are many deaf chefs and other kitchen staff who manage really well. Hayley’s been in the job for two months now and it doesn’t seem to have become a problem. It’s a very small kitchen, though a very busy one, so that probably helps. And the chefs
www.ndcs.org.uk/livechat • 0808 800 8880
are kind, friendly and patient and so far they’re really pleased with Hayley’s progress. She’s willing to learn and enthusiastically gets on with all the tasks they set her. And she seems to pass muster when the kitchen’s at its frenzied peak, when the food orders hit the fan and the chips are down, so to speak. Though Hayley did surprise me when she came home shocked by some of the ripe language and outbursts that fill the kitchen when the going gets hot. “Hayley, have you really never watched any of the chef programmes on the telly?” I ask her. “Well yes but that’s on the telly,” says Hayley. “And the chefs are really nice so I didn’t expect it.” Not that she’s bothered, just surprised; she finds it quite funny. And none of it has been directed at her so far, so that’s a bonus! Hayley’s loving being in the real world of work and she knows what to do if she can’t stand the heat – but I don’t think that’s going to be a problem.
> Read Tiger Mother’s blog at: www.ndcs.org.uk/soundingoff For more information on your child’s options after leaving school see www.ndcs.org.uk/leavingschool. For deaf awareness tips visit www.ndcs.org.uk/toptips.
NDCS Families • Summer 2016
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Day and residential School and College for Deaf students age 4-24
Specialist education and care tailored to every individual Rated ‘Good’ by Ofsted for School, College and Residential Care • Regular Open Days throughout the year • Bespoke visits available • Situated in the beautiful county of Devon and we’re closer than you think! Just over 2 hours from London and 2.5 hours from Birmingham • Excellent transport links; close to M5, Exeter Airport and National Rail Services
exeterdeafacademy.ac.uk @
admissions@exeterdeafacademy.ac.uk
01392 267029 Text 07624 808738 Exeter Royal Academy for Deaf Education 50 Topsham Road, Exeter, EX2 4NF
Registered Charity No. 1124523
@DeafAcademy /ExeterDeafAcademy
Scan the QR code to visit our website!
SO PROUD!
Every day deaf children and young people prove that deafness needn’t be a barrier to enjoying life. Read on for some of the amazing things your children have done to make you proud. We’re so proud of Morgan, who had a temporary job working at Next Home. He was trained to work on the tills but was mainly on the shop floor helping customers. He got the job by just walking in with his CV and speaking to the manager. Well done son. Cheryl and Wayne, parents to Morgan (16) who’s profoundly deaf.
Jake was born at 26 weeks, spent nine in hospital and then we found out he was deaf. He wears his hearing aids every day and is the happiest boy. He still has no speech but that doesn’t stop him getting what he wants. We’re so proud of him and how far he’s come. Jillian and Robert, parents to Jake (2) who’s severely deaf. Megan has a permanent mild to moderate hearing loss and glue ear, has been wearing hearing aids for 10 months and has never once complained. She recently started swimming lessons and we had tears to start with but persevered. After only five weeks she received her half-length certificate. She now loves her lessons and we’re very proud. Jackie, mum to Megan (5) who’s mildly to moderately deaf. www.ndcs.org.uk/livechat • 0808 800 8880
Edward has had endless assessment appointments for a cochlear implant and is always a superstar! He’s managed with hardly any access to sound since October due to glue ear on top of his permanent hearing loss. He had grommets fitted in January and recently made some progress with signing. He takes to everything with a smile. Katrina and Dean, parents to Edward (1) who’s severely to profoundly deaf.
Maisie was born with a severe hearing loss due to Pendred syndrome. By her first birthday she wasn’t responding as she was before. She had cochlear implants but due to an infection had to be re-implanted six months later. This was a massive setback, but she’s always shown how determined she is to learn and impress others. Sammy, mum to Maisie (4) who’s profoundly deaf.
Isaac has worn his hearing aids almost every day since five weeks old. He’s progressing so well, making lots of sounds, clapping and is full of smiles. He goes through small stages of pulling his hearing aids out but always lets us put them back in and continues to wear them. Esme and Ian, parents to Isaac (10 months) who’s moderately to severely deaf.
Nicole has successfully transitioned from a school with a hearing impaired department to an independent college and is doing a L1 in performing arts. She loves it, has a great group of hearing friends and receives positive feedback from tutors. Her first monologue in front of all the parents was fantastic. Tracey, mum to Nicole (17) who’s profoundly deaf.
Do you know a deaf child who’s a superstar? Parents, extended family members or teachers/professionals can all nominate by emailing magazine@ndcs.org.uk. No matter what your child’s level of hearing loss or however big or small the achievement, we think it’s worth celebrating! 17
A difficult decision Corey is mum to Erin (11) and Una (5) who has a profound hearing loss. She talks about her struggle with deciding not to get cochlear implants for Una. Una was born at home, so for the first few days we stayed in the bedroom,” remembers Corey. “When we came out my dogs went berserk because they’d never seen a baby, but Una didn’t react at all. Even for a newborn you’d expect a little muscle twitch, but there was nothing whatsoever. “People tried to reassure me that it would be fine and even when she failed the first test they said ‘well it’ll be mucous’.” Una was diagnosed with a severe hearing loss and although Corey could see it coming, it was still a shock. “There was no deafness in the family,” Corey explains. “I didn’t know what it would mean for Una and for us as a family.” The cause of Una’s deafness is Mondini malformation – an abnormality of the inner ear where the cochlea has a reduced number of turns – and Pendred syndrome. Pendred syndrome is a genetic disorder affecting the vestibular aqueducts, which causes degenerative hearing loss – Una’s hearing loss is now profound. “It’s to do with the fluid balance,” explains Corey. “A bump to the head could completely take out her hearing for a day, a week, forever. But all she ever does is bang her head, you can’t stop her! It’s a balance between wrapping her in cotton wool and just letting her be. She’s really sporty, but the one thing she can’t do that she’d like to is gymnastics because of the risk of bumping her head.” When Una was 11 weeks old she was fitted with hearing aids, but Corey was told not to expect much from them. “They said they might not work at all because she’s so deaf,” says Corey. “I was told she might not locate the source of sounds or make sense of them, but the minute they were switched on she just got it.”
Corey was told very early on that cochlear implants would be an option for Una. “I’d not even heard of them before or ever seen them,” says Corey. “We were given strong opinions about them; it was very much implied that it was the thing to do.” Although the professionals were strongly advising implants for Una, Corey wasn’t convinced. “Una was still a baby at the time,” says Corey, “and it was major surgery on her head that’s elective with no guaranteed success. No parent wants to put their child on the surgeon’s table but if that child’s sick or their life’s threatened then you do it. We didn’t see her deafness as a big issue, although I get that’s a big thing for me to say because I’m not deaf. It was a struggle because I had to make a decision as a hearing person when Una’s got to live as a deaf person in a hearing world.” One thing that helped Corey with her decision was meeting people at their local deaf children’s society. “We met other deaf kids,” says Corey. “From some with no equipment and no speech to others in mainstream schools with implants. We also met deaf adults, some of whom have had implants and taken them off to go back to living silently. I think that helped me form an opinion based on experiences and facts.” Meanwhile, Una was getting on well with her hearing aids, impressing everyone with her lip-reading skills and becoming a confident signer. She’d developed a strong deaf identity and had become a confident, outgoing and sociable child. “She’s easy-going and relaxed,” says Corey. “If she can hear, great, if she can’t, it could be hours before she says her hearing aid’s not working.” Corey increasingly felt that implants were the wrong decision for Una. “I was conscious that they’re quite a new
“Do they want her to be a statistic?”
“I hear with my eyes.”
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0808 800 8880 • www.ndcs.org.uk
Una
Erin
EARLY YEARS NEW sum m chec er klist
04 to
years old
Your summer checklist for the pre-school years
development and it got to the stage where I felt a little like ‘do they want her to be a statistic?’ I did struggle with the decision – I thought, ‘am I making this decision for me or for her? Is it a selfish decision because I don’t want to put my child on the surgeon’s table?’ But I feel like I have adequately researched it and spoken to people from all sides. I can hand on heart say the decision’s been made in Una’s best interests and not mine. The audiology department has finally accepted my decision and supports it,” she explains. Una is very aware of what cochlear implants are from meeting other deaf children. “We’ve also watched switch-on videos on YouTube,” says Corey. “I’ve not shown anything to frighten her; I’ve shown her the positive sides. I’ve explained to her that one day there could be nothing from her hearing aids – she couldn’t hear music, the TV, but she said to me, ‘I hear with my eyes’. She was adamant that she doesn’t want them.” Una has one-to-one and group signing classes at school and the family are doing their best to improve their signing skills should that ever become Una’s main method of communication. Due to the degenerative nature of Una’s hearing loss, Corey’s open to the idea of revisiting the cochlear implants option in the future. “They’ve said that because her speech is so good, implants could be an option until the age of eight or nine,” she says. “We’re prepared to be flexible; if her hearing goes and she wants to try implants, then we can try them.”
If you’re considering a cochlear implant for your child, visiting www.ndcs.org.uk/cochlearimplants and reading other families’ experiences of making their decision, or ordering our Cochlear Implants resource could help. For more information about Enlarged Vestibular Aqueducts, Mondini malformations and Pendred syndrome download our booklet Enlarged Vestibular Aqueducts and Childhood Deafness from www.ndcs.org.uk/publications.
www.ndcs.org.uk/livechat • 0808 800 8880
Developing your child’s communication and language skills
Our guide Helping Your Deaf Child to Develop Communication and Language, For parents with a 0–2 year old provides practical ideas to help your deaf child to develop their language and communication skills. All our resources can be downloaded from www.ndcs. org.uk/publications or ordered by contacting our Freephone Helpline.
Communicating in the car
If your summer plans involve long car journeys and your child struggles to communicate in the car without lip-reading or using visual cues, we have some tips that could help. Using equipment such as radio aids, personal listeners and even extra mirrors can make a difference. Have a look at www. ndcs.org.uk/communicatingincar.
Local group play schemes
Local deaf children’s societies often organise summer family events or play schemes, which can be great opportunities to meet other families with a deaf child. Find details of your nearest group at www.ndcs.org.uk/ localgroups.
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Charlotte’s releas Diagnosed as profoundly deaf at six years old, Charlotte (now 10) struggled with frustration and tiredness trying to keep up at school. Then she discovered a passion for horse-riding which has given her a new lease of life.
C
harlotte was seriously ill when she was born so when her newborn hearing screening showed that she was deaf on her left side it was the least of her family’s worries at the time. She was tested again at eight months old and told she was fine, but a test in foundation class at school when she was six revealed a problem. “We thought it was a one-off, but further tests showed she was profoundly deaf in both ears,” says mum Polly. “The audiologist didn’t know how she’d coped until that point.” Polly and husband Darren felt shocked. Deafness was a completely different world for them. “We had a bit of a meltdown. We didn’t know what to do,” says Polly. “But Charlotte knew no different and took it in her stride. She got both her hearing aids at once and was told to wear them an hour each day to get used to them. But she thought they were wonderful and wouldn’t take them out.” Charlotte’s early illness left her with small scars on her brain, causing memory problems. “She’s progressing slowly at school but gets frustrated not to be learning at the same rate as her friends. She also gets very tired,” says Polly. “Her school were lackadaisical to start with. They thought she had hearing aids so she was ‘fixed’, but she’d lost six years of learning.” Deciding Charlotte needed more support but not sure what to do, Polly and Darren contacted the National Deaf Children’s Society who put them in touch with Children and Families’ Support Officer Debbie. Debbie made it clear to the school they needed to
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do more to meet Charlotte’s needs. She also organised a visit from the NDCS Roadshow. “That helped the teachers realise. They couldn’t believe the difference the technology made and the effect deafness had. They thought it meant she couldn’t hear anything rather than she was just missing chunks,” says Polly. Things are now better as Charlotte also has the support of a Teacher of the Deaf. “Now the teachers are aware of her needs, Charlotte knows to keep asking until she understands and the other children expect that she won’t always hear,” explains Polly. The National Deaf Children’s Society also signposted them to their local group, Plymouth and District Deaf Children’s Society. “That’s been a little lifeline for Charlotte as she was the only deaf child at her school until recently,” says Polly. “The group has days out once a month and it’s all normal. She’d be isolated otherwise.” Charlotte’s brother Edward (14) and sister Jessica (18) have benefited from meeting other siblings too, but Charlotte’s temper has been a problem for the family. “She’s so frustrated and tired and she takes it out on her brother and sister,” says Polly. “She’s had counselling and support from Child and Adolescent Mental Health Services (CAMHS) on how to calm down.” Polly and Darren looked for activities that could boost Charlotte’s confidence but when she said she wanted to ride horses their hearts sank. “Mental images of cold mornings ‘mucking out’ filled me with dread,” says Polly. “Pony club would be too noisy
for Charlotte and one-to-one lessons too expensive. After an internet search I found there was a Riding for the Disabled Association (RDA) unit about eight miles from us. I emailed and a few days later they called and asked all about Charlotte’s needs and put us on the waiting list.” Charlotte then attended a six week riding course with the marines, organised by their local deaf children’s society. “We noticed a massive change in her confidence, both in riding a horse and in herself,” says Darren. “She fell off two or three times in the obstacle course. We were waiting for tears and tantrums but she just got straight back on. It’s good for her self-esteem and she’s good at it.” 18 months later the RDA offered Charlotte an hour’s riding lesson every week on a
se
Charlotte
PRIMARY PRIMARY YEARS YEARS NEW sum m chec er klist
5 10 to
years old
Your summer checklist for the primary school years
Edward
Jessica
Wednesday afternoon and her school gave her permission to leave half an hour early. “It’s like a therapy session for her. She transforms from a frustrated, stressed and shy child into a confident horse rider,” says Polly. “She can learn physically, not through hearing, which is great after being so tired and frustrated at school. They also do things like trying to remember the parts of a horse to improve her memory.” “There’s no pressure, no background noise and all she has to think about is the horse,” Darren adds. “The RDA groups are small with clear and simple instructions and a confidence boost of positive praise and encouragement. The instructors use Charlotte’s radio aid and hand gestures to make sure she understands,” continues Polly. “Before half term she was performing a dressage round and instead of seeing what she was doing with the horse, all I could see was her smile.” “I asked Charlotte ‘why horses?’ She said ‘you tell them what to do using your hands and legs and they tell you if they’re happy by the way they move – understanding isn’t all about hearing each other’. ” Polly and Darren advise others to fight to get their child’s needs met. “If you need something, don’t take no for an answer,” says Darren. “Use local deaf children’s societies as someone there will have been through whatever you’re going through. Don’t be afraid to ask for help.”
To find a deaf-friendly activity near you, visit www.ndcs.org.uk/me2. For more information about our Roadshow and how you can book a visit for your child’s school see www.ndcs.org.uk/roadshow. For more on deaf children and tiredness have a look at www.ndcs.org.uk/tired. Find out more about the Riding for the Disabled Association at www.rda.org.uk. www.ndcs.org.uk/livechat • 0808 800 8880
Mild hearing loss, major impact: information for teachers Is your child finding school challenging because of their mild hearing loss? We’ve produced a video and booklet you can share with their teacher which explains the major impact a mild hearing loss can have on your child’s learning and school experience. The resources also suggest five simple things teachers can do to make sure your child can hear as well as possible. www.ndcs. org.uk/mildmoderate
Cycling, swimming and other summer activities Learning to ride a bike can be a challenge for all children, but a deaf child may also face communication barriers and balance difficulties that mean they feel less confident when cycling. Our factsheet Cycling and Your Deaf Child has useful information to help your child to fully take part in cycling lessons and to ride a bike safely. Download it from www.ndcs.org.uk/cycling. We also have a factsheet on swimming, Swimming and Your Deaf Child – A guide for parents which can be downloaded from www.ndcs.org. uk/publications and plenty of other information on swimming at www. ndcs.org.uk/swimming. For information about other deaf-friendly activities see www.ndcs.org.uk/me2.
www.ndcs.org.uk/5-10 NDCS Families • Summer 2016
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Worth the battle
Alison was unsure about claiming Disability Living Allowance (DLA) for daughter Leah (13), and when she did, she was refused. But with our help she took her case to Tribunal…
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lison smiled as she watched her daughter speak animatedly into their home phone. Leah’s confidence in using it had greatly increased since they bought the hearing aid compatible model. And it was all thanks to the DLA money. Alison was pleased she’d battled to claim the benefit for her. “My parents are profoundly deaf, so doctors tested Leah’s hearing regularly. The results were always the same – borderline,” says Alison. “We were concerned though – while she’d turn to loud noises like a door banging, she wouldn’t hear us calling her and she’d want the telly really loud.” Before Leah started nursery, Alison and husband Peter wanted to make sure her hearing really was OK, so took her to a private specialist using medical insurance. “He looked at the previous hearing test results and immediately diagnosed her as moderately deaf,” says Alison. “We were relieved and when Leah got her hearing aids, it made such a difference. She no longer asked us to repeat ourselves, and answered when we called. She loved her ‘magic ears’, wore them from waking up until bedtime.” Leah made good progress throughout nursery and school, well supported by the schools and local authority sensory services. Alison felt all was going well and it didn’t occur to her to apply for benefits until a friend suggested it. “With Leah moderately deaf, I thought no way would we get it,” says Alison. “But I gave it a try. The forms were 40–50 pages long, and so complicated.” When the claim was turned down, Alison accepted it. But when Leah was 11, she took her to our Roadshow 22
NDCS Families • Summer 2016
bus at a school where Alison’s sister worked. There they met Bal, one of our children and families’ support officers. “We tried some great gadgets, such as phones that connect to her hearing aid shoe and cables that helped her hear TV and music better,” says Alison. “All things that would be really helpful now she was that bit older. But they’re expensive. Bal suggested we use Leah’s DLA money to buy some. When I said we didn’t receive it she was surprised and encouraged me to apply.” Alison couldn’t see how they’d be entitled, but Bal pointed out extra things Alison did for Leah, such as checking on her when she didn’t respond from upstairs, cleaning her hearing aids, taking her to audiology appointments, as well as frequent GP visits for ear infections due to her hearing aids – the ‘care’ part of the DLA. And the ‘mobility’ part: expense of travelling to appointments and driving her to school because she wasn’t confident getting the bus – traffic noise amplified by hearing aids is stressful, emergency sirens disorientating and there’s the danger of not hearing oncoming cars. “What Bal said made sense, especially when I compared all I do for Leah to her younger brother Joseph, who’s hearing,” says Alison. Alison filled in the DLA claim form but again the application was rejected. They appealed but lost. “Bal insisted we shouldn’t give up, so we took it to Tribunal,” says Alison. “Bal referred us to a National Deaf Children’s Society case worker and I sent lots of information to him for evidence.”
On the day of the Tribunal, Alison was terrified. “I felt I couldn’t go through with it, but Bal said ‘you must fight!’” says Alison. “It was like going into court; I was scared they’d grill me, that I’d give wrong answers. I met the case worker who’d sent the Tribunal panel a copy of the evidence summary in advance.” Inside, as Alison prepared for an onslaught of questions from the panel of three professionals, she was astonished at what happened next. “They’d read the evidence, had no further questions and granted Leah DLA, ‘low level’ for the care and mobility parts, until her 14th birthday,” says Alison. “I was so relieved!” With the backdated payment they bought equipment for Leah which has really boosted her independence. “She’s very loud at home but does struggle with confidence with people she doesn’t know, but she has improved,” says Alison. “We replaced our phone with a type compatible with hearing aids; before she used to have it on loudspeaker, now she gets more privacy. We bought a vibrating alarm clock so she can be independent and wake herself up. “We’ll have to reapply for DLA in September, but I’m ready for it, even if I have to take it to Tribunal. I’d definitely have given up without the National Deaf Children’s Society. They showed me how Leah is entitled to the benefit. I’d say to all parents of deaf children, apply for it – it’s money that’s there for the children to use. And it can make all the difference to their independence and confidence.” 0808 800 8880 • www.ndcs.org.uk
TRANSITION YEARS NEW sum m chec er klist
11 13 to
“I’d say to all parents of deaf children, apply for it.”
years old
Your summer checklist for the primary to secondary transition years Look, Smile, Chat
Our Look, Smile, Chat resources are designed to help improve deaf awareness and aid communication between deaf and hearing young people by showing how simple steps can make a big difference. Tell your child to have a look at www.buzz.org.uk/looksmilechat.
Preparing for secondary school
Is your child starting secondary school in September? Have a look on our YouTube channel for our video My Deaf Son and Moving to a New School. James (12) who is profoundly deaf and his parents tell us what it was like when he moved from primary to a mainstream secondary school, and share their top tips for preparing for the move. www.youtube.com/ ndcswebteam
Helping your child to stay safe and smart online
To find out more about DLA, visit www.ndcs.org.uk/dla. For information about other benefits which may be available to deaf children and young people visit www.ndcs.org.uk/finance. Have a look at when our Roadshow is next in your area at www.ndcs.org.uk/roadshow.
Does your child spend a lot of time online? Do you ever worry about what they’re doing? Our new webpage has loads of tips and advice on what you can do to protect your child, and encourage them to make smart choices online. Have a look at www.ndcs.org.uk/esafety.
www.ndcs.org.uk/11-13 NDCS Families • Summer 2016
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What’s important to deaf young people today? Introducing some of the deaf young people on our fourth Young People’s Advisory Board (YAB) and their exciting plans to improve life for deaf young people.
The YAB is made up of 18 deaf young people (two each from Wales, Scotland and Northern Ireland, and 12 from England). They’re aged 11–18 from different backgrounds and with varying levels of deafness. They also have different communication preferences – some use British Sign Language (BSL) or Sign Supported English (SSE), some use speech and some a mixture. The YAB was introduced in 2011 to make sure that deaf young people are directly involved in shaping our support and services. YAB members represent deaf young people across the UK and act as ambassadors and positive role models. A key part of their role is to raise awareness about what’s important to deaf young people today, sharing their views, experiences and ideas to improve things. During their first residential weekend the YAB members discussed their experiences, thoughts and feelings on being a deaf young person today, including the main challenges they face and the positives about being deaf.
In particular, they discussed five key areas which they felt could be improved: • education • access to services • leisure and social opportunities • sign language • deaf awareness. This year the YAB members will run their own campaign on a topic they feel is most important to help improve deaf young people’s lives. Previous YAB
Keep an eye out for what the YAB is up to on the Buzz website: www.buzz.org.uk.
If you or your child might be interested in working with the YAB or supporting a campaign around sign language get in touch on cyp@ndcs.org.uk. For more information about previous YAB campaigns see www.buzz.org.uk/looksmilechat and www.ndcs.org.uk/mylifemyhealth. NDCS Families • Summer 2016
members successfully launched deaf awareness campaigns Look, Smile, Chat, and My Life, My Health which campaigned to improve young people’s experiences of visiting their GP. The new YAB had the opportunity to vote on which area they wanted to campaign on. Each member had 10 voting tokens, and split them however they wanted between the five topic areas. Sign language won with the most votes, closely followed by deaf awareness. We’re excited to be working closely with the YAB on a topic they feel so passionately about and will use the next residential to help them identify a focus area. We’ll support the group through discussions, training and workshops to build a campaign plan involving sign language. 0808 800 8880 • www.ndcs.org.uk
We asked a few of our new members why they wanted to join the YAB:
“
I’m Aliko, I’m 18, live in Leeds and am profoundly deaf. I joined the YAB to share my experiences and encourage deaf children to be confident about their future. I also wanted to be a role model to show them how you can become a successful deaf young person.
” “
I’m Beth, I’m 17 and from Coventry. I joined the YAB because I love the idea of even slightly being able to change people’s perceptions about deafness.
“
I’m Grace, I’m 14 and from Newcastle. I joined the YAB because I want to get my voice heard!
“
” “
”
I’m James, I’m 14 and from Scotland. I joined the YAB because I want to make a difference for everyone else in the UK and make friends.
” ”
I’m Joab, I’m 11. I wanted to join the YAB because I can’t hear out of one ear so I feel like I’m the bridge between two worlds – the deaf and hearing worlds.
About the new YAB • • • • •
Members were appointed in December and their role lasts for 18 months, until June 2017. They will have four residential weekends, each in a different UK city, where they will receive training, get involved in consultations and have support to develop their knowledge, skills, confidence and independence. They will have opportunities to meet influential people like our trustees and deputy directors, and influence our work. Some members may attend political party conferences in the autumn to meet MPs. Previous YAB members have done everything from writing articles, creating vlogs (video blogs) and reviewing services, to presenting in schools.
www.ndcs.org.uk/livechat • 0808 800 8880
YOUNG PEOPLE
14+
NEW sum m chec er klist
years
Your summer checklist for young people aged 14+ Personal profile templates
We have a template personal profile for students at secondary school or in post-16 education. Your child can personalise them to provide information about their needs for any staff member. Download the template and an example of a completed personal profile to give your child an idea of what they might want to say from www.ndcs.org.uk/profiles.
Information to help support your child’s future
Is your child starting to think about their choices after leaving school? Our factsheet Supporting Your Child (14 years+) in Making Choices About Their Education and Future Careers will tell you how to support them, what responsibilities schools and local authorities have, and what support deaf young people can receive post16. There are separate factsheets for England, Northern Ireland, Scotland and Wales. Find them at www.ndcs. org.uk/leavingschool.
Deaf young people and travelling
Travelling is a great way for a deaf young person to increase their confidence, make new friends and learn about the world, but it can create challenges. If your child is considering travelling they can read our interview with Sara (22) who travelled around Asia and Oceania at www.ndcs.org. uk/travel. For more tips check out www.deaftravel.co.uk.
www.ndcs.org.uk/14plus
NDCS Families • Summer 2016
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Combatting bad behaviour Kerri (18) is profoundly deaf, has attention deficit hyperactivity disorder (ADHD) and has struggled with behavioural issues. She and mum Jackie tell us how she manages her condition and what her plans are for the future.
K
erri walked in to the McDonald’s kitchen on her first shift and was relieved to see a boy wearing hearing aids – she wasn’t the only one. “When I applied I didn’t mention my deafness,” says Kerri. “I wasn’t confident. I went to the interview and didn’t tell them.” Since that day nearly two years ago, Kerri has blossomed in confidence in her job, is comfortable with telling people to repeat things if necessary and has even kicked a rowdy group out for messing around. She’s come a long way… Kerri was diagnosed as profoundly deaf at 14 weeks old. She was given two hearing aids but only took to wearing one. “I went through a grieving process – she wasn’t the perfect little baby that I was hoping to have,” says Jackie. “It was a shock but you just have to get on with it.” Jackie had another shock when Kerri was approaching two years old. “She turned into the child from hell! She would kick, bite and pinch me, her dad, anyone. She was a nightmare! We put it down to frustration from the deafness but I think the ADHD was probably rearing its head,” she says. Kerri’s behaviour continued to be a problem throughout primary school and greatly impacted her ability to
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make meaningful friendships. “It got to the point where I didn’t want to go out,” admits Jackie. “I knew she was going to run off and people would say ‘look at that naughty child – if she was mine she wouldn’t behave like that.’”
What is ADHD?
ADHD is a group of behavioural symptoms that includes inattentiveness, hyperactivity and impulsiveness. Common symptoms of ADHD include: • a short attention span or being easily distracted • restlessness, constant fidgeting or overactivity • being impulsive. Most people with ADHD have problems with all of these, but it isn’t always the case. Some people with the condition may have problems just with inattentiveness. This form of ADHD is also known as attention deficit disorder (ADD). Eventually, when Kerri was in Year 5, Jackie and the school decided to look into Kerri’s behaviour. “School asked me to fill in a form, they also filled in a form, and we went to see a doctor,” explains Jackie. “She
didn’t ask anything about Kerri and just said, ‘she’s got ADHD; I can give you a prescription.’ There was no explanation, nothing, so I wasn’t going to accept that.” Kerri then started at a secondary school for deaf children and even with very small classes of four to eight pupils, her attention span still wasn’t good, so Jackie spoke to Kerri’s paediatrician. “He’s quite an expert in ADHD and he said Kerri’s more on the ADD side but that he’d recommend medication. She’s been on it ever since, but it wasn’t a magical cure as far as her behaviour’s concerned,” says Jackie. Despite some issues with Kerri’s behaviour at secondary school, especially during the first three years, Jackie and Kerri feel there would have been many more problems in a mainstream school. “I’d have been expelled,” says Kerri, honestly. Over the years, with the ADHD more under control, Kerri’s personality has really developed. “She’s a rounded person with a very caring nature,” says Jackie. “She’s organised and conscientious. She has a good work ethic as far as school’s concerned even though she struggles academically.” Jackie thinks the main thing helping Kerri manage her ADHD is medication, but it’s not the only thing that’s 0808 800 8880 • www.ndcs.org.uk
ADDITIONAL NEEDS
“It got to the point where I didn’t want to go out.”
More information on additional needs Family stories
We have a selection of stories from previous magazines about deaf children with additional complex needs online at www.ndcs.org.uk/ACNstories.
Regular e-newsletter
Email families@ndcs.org.uk to sign up to our e-newsletter especially for families with deaf children with additional complex needs.
Contact other families helped. For more than nine years Kerri’s been taking martial arts classes. “I can control myself now,” she says. “It’s given her a chance to talk with people with a common interest,” adds Jackie. And as she’s now achieved her third Dan Black Belt, she’s even doing some teaching. Kerri’s also a keen swimmer and recently achieved the record time for backstroke at her school swimming gala. “I think if she hadn’t taken up martial arts like she did, she would have taken up swimming,” says Jackie. “She’s got medals at every single gala.” But Kerri admits that her sports have taken a back seat recently because of her job at McDonald’s. “I like my job because I get out of the house, I’ve made friends and the money’s good,” she explains. “Sometimes I have to ask customers to repeat what they’ve said, especially if I’m on the tills and no one else is there.” Kerri is now facing the difficult decision of what to do now that school is finishing. “The original plan was that she wanted to work with children,” explains Jackie. “Now with this McDonald’s job she’s changed her thinking. This summer she’s going to up her hours at McDonald’s, look for other jobs, as well as talk to McDonald’s about an apprenticeship scheme.” Kerri’s even considered working her way up to become a McDonald’s manager. Taking up activities and a part-time job has really boosted Kerri’s confidence and has helped her to manage her ADHD. She explains how deafness shouldn’t be a barrier to trying new things: “Don’t let your disability put you off – if you don’t get a job, keep trying. Take any job at first and at least you’ll have some money coming in.” Good luck in the future, Kerri!
If your child’s thinking about what to do after school, visit www.ndcs.org.uk/leavingschool for information on education, employment, apprenticeships and more. To find out more about ADHD have a look at the National Attention Deficit Disorder Information and Support Service: www.addiss.co.uk.
Get in touch with other families of deaf children with additional needs and share experiences and tips. Visit our online discussion forum: www.parentplace.org and our Facebook page: www.facebook.com/NDCSUK.
YouTube videos
Check out our YouTube playlist of helpful videos about deaf children with additional needs at www.youtube.com/ndcswebteam.
Specialist activity providers
For information on organisations that provide activities for children with additional needs visit www.ndcs.org.uk/specialistproviders.
Booklet
Deaf Children with Additional Needs includes sections on understanding additional needs, parenting tips, choices for your child and resources.
www.ndcs.org.uk/ additionalneeds If you’ve registered on our website www.ndcs.org.uk you can order or download publications: click Family Support and then Order and view our publications. Or contact our Freephone Helpline on 0808 800 8880 or email helpline@ndcs.org.uk. NDCS Families • Summer 2016 NDCS Families • Summer 2016
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How do I... ...support my child’s school to understand deafness?
?
Deaf children attend a range of different schools and whatever their needs, it’s important that their school understands them. We asked four parents about how they support their child’s school to understand deafness. Andrea is mum to Isabel (8), Sam (6) and Elliott (2). Sam has a moderate to severe hearing loss and wears bilateral hearing aids. Sam is in Year 1 at a small mainstream primary school. Much like us, the school was starting from scratch, never having taught a deaf child before. I had a meeting with Sam’s teacher and the head teacher just before he started and they agreed to do what they could. When he got his hearing aids we showed the other children in the class and explained they were like ‘glasses for ears’. All the children wanted them after that! We got in touch with a Teacher of the Deaf and she helped with a few deaf awareness basics. She also provided a lot of practical information such as Sam’s particular type of hearing loss and suggestions like school keeping a hearing aid cleaning kit. My advice is to be positive; if you don’t underestimate what your child can achieve, the teachers won’t either. Encourage school to be open about your child’s deafness and have an inclusive attitude. Ensure teachers aren’t scared to present challenges to your child and take them out of their comfort zone. Make sure the Teacher of the Deaf is involved, but don’t rely on them to provide all the information to school; do your own research as well. Check that information is shared with all staff, not just your child’s class Sam, Isabel teacher. and Elliott 28
NDCS Families • Summer 2016
Sarah and Paul are parents to Maisie (26), George (15) and Molly (10). Sarah and Molly both have unilateral microtia with associated hearing loss. Molly goes to a mainstream primary school. When she started, I fully explained to her teacher about the condition and have continued to do so at the beginning of each school year. Molly did have an issue in reception class with a couple of boys making remarks about her ear. Her teacher immediately sorted out a session on ‘differences’ for the class and Molly then decided to talk to the entire school about microtia and how it affects her. What a brave little girl! On the whole, the school has been very responsive to any issues but they are rare now. I would simply say stay in touch with the school and make sure your child is confident enough to raise any problems as Molly soon as possible.
Join our family panel Next time in Families magazine:
“How do I… help my child to make friends?”
Andrew and Libby are parents to Katie (13) who has a moderate to profound hearing loss and wears hearing aids.* Katie is in Year 8 at a mainstream secondary school, following on from a mainstream junior school. Fortunately both schools have Teachers of the Deaf who advised the staff regarding best seating plans and deaf awareness training needed for other children not to tease Katie about her deafness. They also advised about caring for hearing aids; Katie needed considerable help when first given aids at age seven, but was independent with this when starting secondary school. Katie has experienced some occasional teasing. She’s currently reluctant to wear her hearing aids as she feels different. She’s been offered some psychological support with this at school but unfortunately hasn’t wanted to continue with it. She has trialled a radio aid but doesn’t like the attention this draws to her. Hopefully she’ll become less self-conscious as time goes by. My advice is to liaise very closely with the staff and any Teachers of the Deaf. I have sometimes needed to liaise with the school if Katie wasn’t sitting in the correct place or had been in trouble where it appeared she had not heard an instruction.
If you have any tips, advice or suggestions to share, get in touch at magazine@ndcs.org.uk. 0808 800 8880 • www.ndcs.org.uk
HOW DO I...?
*Names have been changed.
Hamish and Sheila are parents to Jasmine (18), Ingo (15) and Portia (8). Ingo is profoundly deaf and wears hearing aids, and Portia has a severe hearing loss and wears hearing aids. Hamish is profoundly deaf and has a cochlear implant. Portia and Ingo both go to mainstream school. In the early stages, I would support the Teacher of the Deaf in deaf awareness sessions at the start of each school year. These are to help train new teachers and address any questions existing teachers have. I would share my own experience of being a deaf person, explaining what works and what doesn’t and that we expect our children to reach their full potential, not just get by. It is, in our opinion, crucial that the deaf child has a direct relationship with the teacher and not just with the teaching assistant. We’ve always encouraged teachers to get in touch if they ever have questions.
Generally, it’s all been positive. The key is to have an open ongoing dialogue with the school, recognise that the needs of the child will vary over time and make yourself available for any meetings at short notice. My advice is to use the excellent resources and support that the National Deaf Children’s Society provides. Ask them to introduce you to deaf adults or parents who can share positive experiences. We had fantastic support from the National Deaf Children’s Society support workers who did deaf awareness training sessions with Ingo’s and Portia’s peers and specialist Teachers of the Deaf who shared National Deaf Children’s Society resources Jasmine with the school. Portia and Ingo
Our Supporting the Achievement of Deaf Children resources can help teachers understand the needs of deaf children, check the school environment is suitable for your child’s needs and make sure your child feels fully included in all areas of their school life. www.ndcs.org.uk/supportingachievement For help with choosing a suitable school for your child visit www.ndcs.org.uk/choosingaschool. If your child is experiencing bullying, our resources at www.ndcs.org.uk/bullying for parents, young people and professionals could help. For deaf awareness tips and resources visit www.ndcs.org.uk/deafaware. For tips directly for young people see www.buzz.org.uk/looksmilechat. www.ndcs.org.uk/livechat • 0808 800 8880
NDCS Families • Summer 2016 NDCS Families • Summer 2016
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We believe that all pupils who are deaf can learn and take an active part in achieving their full potential. We teach pupils from Early Years to Sixth Form to acquire language skills in BSL and English and become confident and independent young people.
Established 1829
Interested? Come and visit or go online: www.deaf-school.co.uk Telephone: 01302 386733
Doncaster Deaf Trust
A National Centre of Excellence The Doncaster School for the Deaf is owned and operated by Doncaster Deaf Trust
Your child, their future, our priority Oak Lodge is a residential and day school for students with hearing, speech, language and communication needs aged 10-19.
Aspire, Believe, Achieve We create individuals who are independent, organised, motivated, innovative, inquisitive and confident. To find out more about our inspirational school or for enrolment information, contact us on: t: 020 8673 3453 e: info@oaklodge.wandsworth.sch.uk w: oaklodge.wandsworth.sch.uk
NDCS Magazine Advert D4.indd 1
12/01/2015 15:46
ROADSHOW
Launching our new Roadshow
“I loved listening to music using the Bluetooth neckloops and streamers. It was my first time listening to music clearly.”
Pupils from Frank Barnes School for Deaf Children helped us launch our new Roadshow in London at the Guildhall. At our London launch earlier this year, we were honoured to be joined by pupils and staff from Frank Barnes School for Deaf Children as well as many of our supporters who helped make the new Roadshow Bus possible. Visitors to the Roadshow came on board to observe a technology session in action. The children were really excited about the new technology available and the vibrating alarm clocks were a particular favourite. While the sessions were being delivered, visitors had the opportunity to talk to the Roadshow team to find out more about this unique and free service for deaf children, young people, their families, friends and the professionals working with them. The Roadshow team would like to say a huge thank you to everyone who came along to help us celebrate, in particular the amazing pupils and staff from Frank Barnes School.
“I really enjoyed the workshop and learnt a lot about the technology available to me.”
“I liked the fun and relaxed atmosphere on board plus talking with deaf role models who work on the Roadshow.”
“The vibrating alarm clock will help me get up in the morning so I can get to school on time.”
To find out more about the Roadshow and how to book a visit for your child’s school or event see www.ndcs.org.uk/roadshow.
www.ndcs.org.uk/livechat • 0808 800 8880
“I love that your new Roadshow is now much brighter and more colourful.”
Rebecca Citroen, Teacher at Frank Barnes, said:
“
It was a really good day that benefited the children. There was a wide range of technology for them to look at and it was great for the children to be in an environment where they could go up and talk to anyone and be able to communicate.
”
NDCS Families • Summer 2016
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Cued Speech makes spoken language visible Cued Speech uses hand shapes near the mouth to clarify the lippatterns of normal speech. It complements the use of both cochlear implants and BSL
It’s never been easier to learn Cued Speech Arrange an introductory session for professionals and families
Keep on track with affordable Skype sessions Use free e-learning to build skills Bursaries for parents where needed You can also learn to cue at our Devon Cue Weekend 19th-21st Aug, 2016 (residential optional)
Our primary achievers Each of our primary pupils gets the best possible start to their learning. Foundation Stage professionals teach in a well equipped area designed
Contact us at info@cuedspeech.co.uk or visit our website for more information
to develop creative, physical and social skills as well as linguistic and mathematical abilities. Key Stages 1 and 2 follow the National Curriculum including the Literacy and Numeracy Strategies. Speech and Language Therapy plays an active role in individual,
T: 01803 712853 E: info@cuedspeech.co.uk W: cuedspeech.co.uk learntocue.co.uk
group and class work. For full details of our day or residential options, please call 01332 362512 (voice/text).
Charity registered in England and Wales No 279523
Royal School for the Deaf Derby, Ashbourne Road, Derby DE22 3BH. Email: enquiries@rsdd.org.uk www.rsd-derby.org Reg. Charity No. 1062507
Learn, grow and flourish
We’ve moved to an exciting new location A new state of the art building shared with a mainstream primary school
Frank Barnes School for Deaf Children 4 Wollstonecraft Street London N1C 4BT www.fbarnes.camden.sch.uk
Tel: 020 7391 7040 SMS: 07970 626 197 Fax: 020 7391 7048 admin@fbarnes.camden.sch.uk
Frank Barnes School for Deaf Children
ASK THE EXPERT
Ask the
expert
y
le r e v e B
Each issue a different professional shares their expert advice and gives information to help you support your child. This time Beverley Place, a music teacher who has taught deaf children, shares her insights. What types of lessons and pupils have you taught?
I’ve taught classes of Year 3 children in mainstream schools using violins and cellos. We do a term-long string project and then the pupils are able to choose to carry on with lessons in smaller groups for a small charge per term. I’ve come into contact with a few deaf pupils, ranging from a pupil with a partial hearing loss in one ear to profoundly deaf children who have hearing aids and/or support workers who interpret for them. Last year I had a Year 4 pupil who was born profoundly deaf and communicated using British Sign Language. She had recently received cochlear implants.
How did you prepare for teaching deaf pupils?
I got some good advice from various deaf charities including the National Deaf Children’s Society and their resource on making music activities accessible for deaf children. I also did some research to find out what other people suggested. Many times I was told violin wasn’t a good instrument for a deaf child, which I found very unhelpful because my pupil had already been playing for a year. I could hardly take the violin off her and give her a different instrument a year down the line. I did find that I had to make a few worksheets that focused www.ndcs.org.uk/livechat • 0808 800 8880
more on rhythm or put some words to the music to help my pupil to get the rhythm.
How did you communicate with your deaf pupil? Did you adapt your teaching style?
My pupil had an interpreter but I tried to talk to her. I picked up a few signs like ‘where is your book?’ This was useful, particularly when the interpreter was absent. The good thing about the violin is that you can see the rhythm through the movements of the bow. I demonstrated a lot. Sometimes we stepped out the rhythms for example, walk, walk, jogging, jogging. I definitely picked repertoire that was very rhythmical and it helped if it had rhyming words with it too. A deaf child learns the same way but there is just a little bit of extra effort needed in communication.
What’s most challenging about teaching deaf pupils?
My pupil couldn’t hear her violin very well so we used an electric pick-up and an amplifier to make it loud enough
for her to hear. She couldn’t hear anyone else’s violin so when we played in assemblies we made her the leader and everyone followed her, which worked well.
What’s most enjoyable?
Everyone is individual and has their own strengths and weaknesses. As long as they’re enjoying themselves and putting in some effort to play at home, music lessons are brilliant!
Do you have any tips for other deaf children who want to play an instrument?
If you look on the internet you’ll find examples of deaf children who have learned to play an instrument. My pupil also got her Copper Music Medal (first level violin medal). It won’t be easy and you’ll need to try and try and try but playing an instrument is very good fun!
To find out more about deaf children and music visit www.ndcs.org.uk/music. To see videos of other professionals who may support your child, go to www.ndcs.org.uk/whowillhelp.
NDCS Families • Summer 2016
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Preparing for schoo School trips can bring great opportunities and challenges for deaf children. Find out how you can make sure your child is fully prepared and included. A school trip can be a chance for children to expand their horizons, learn to be more independent and socialise with peers. But for parents, waving a child off on a trip can be an anxious time. For parents of deaf children, there may be extra worries. What if they don’t hear or understand important instructions? Will they be able to manage their hearing aids or implants? Will they be left out? It’s natural to worry, but there are things you can do to prepare your child and their school to make sure your child gets the most out of the trip.
Talk to the school When a trip is announced contact the school as soon as you can to find out what it involves and share any concerns. When planning trips schools should carry out a risk assessment in advance to find and address potential difficulties. They should already have information about your child’s needs during a normal school day. Is there anything more you need to tell them about your child’s needs outside the school environment, especially if the trip involves an overnight stay? Here are some points to consider before contacting the school. • Does your child have any additional medical needs? • Do they need to take medication? Who will be responsible for keeping and administering it? • How will your child keep their hearing aids or implants safe at night? • Does your child prefer to sleep with a light on? • What are the arrangements for alerting your child if there’s a fire? • Does your child need one-to-one support to stay safe, or is close supervision of the group enough? • How will staff make sure that your child has understood instructions? •
Is there any new vocabulary, for example to do with safety or a place they will visit, which it’d be useful for your child to know in advance? If so, could you have a list of the words to help them prepare?
Has your child been refused a place on a trip? It’s unlawful for a school to refuse to take a child on a trip because they’re deaf, unless they’ve considered all the reasonable adjustments they could make to enable your child to take part. Even if the reasons they give for refusing a place are to do with health and safety, they must still show that they’ve looked into all reasonable adjustments they could make to get over the difficulty. Schools shouldn’t put pressure on parents to accompany their child on trips as a way of including them. 34
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0808 800 8880 • www.ndcs.org.uk
THE SCHOOL YEAR
ol trips
Supporting your child’s education over the summer
Prepare your child • Talk to your child about the activities they’ll do and places they’ll visit, so they’re familiar with the itinerary beforehand. • Help them practise any new language they need for the trip (see opposite). • Give them the chance to tell you about any worries they have. • Rehearse strategies for coping in potentially difficult situations, for example if they don’t understand, if they have a problem with their hearing technology or if they’re offered a food they don’t like.
Nadine’s daughter Billie-Jayne (10) went on a residential school trip in February. Billie-Jayne is profoundly deaf with cochlear implants and goes to a mainstream school with a hearing impairment unit. At the beginning of February she attended a three day and two night residential outward bounds trip, with approximately 50 other pupils from her school. There were five pupils in total with a hearing loss. The school arranged for a signing support member of staff from Billie-Jayne’s school, whom all the children knew, to attend so that all information could be effectively communicated and understood. This person also took responsibility for the children’s equipment such as the charger for implant batteries. The staff at the residential trip were great. They tried hard to communicate effectively with all the deaf children. Billie-Jayne had a great time and her favourite part of the trip was a giant swing activity – she thought she was going to go over the fence!
www.ndcs.org.uk/livechat • 0808 800 8880
For ideas and activities to help develop your child’s reading, writing and maths skills over the summer, see our resources Help Your Deaf Child Develop Language, Read and Write and Help Your Deaf Child Develop Maths Skills. There are booklets for different age groups. www.ndcs.org.uk/schooleducation Ask the school for a list of key vocabulary for each subject for next term so you can go through it with your child before they come across it in lessons. If your child will be taking public exams in the next two years (GCSEs/standard grades, AS/A- levels/Highers), ask the school which exam boards they’re using and have a look at their websites. They contain useful information such as exam timetables and grade boundaries, as well as topics to be studied. www.ndcs.org.uk/exams If your child is starting college or an apprenticeship or going to university next term, visit www.ndcs.org.uk/leavingschool.
To find out more about your child’s rights see our factsheet The Equality Act and Your Deaf Child’s Education in England, Scotland and Wales, downloadable from our website. For more information on disability legislation in Northern Ireland visit www.equalityni.org. The hearing aids FAQs on our website have some useful scenarios you can talk about with your child. www.ndcs.org.uk/hearingaidsFAQS Find out about our Me2 deaf-friendly activities at www.ndcs.org.uk/me2.
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Going solo The time will come when your deaf child will start thinking about moving away from home. While this may be an anxious time for you, you can be reassured that there’s plenty of technology to help keep them safe and promote their independence and confidence. Knowing what’s going on There are a range of loud doorbells that have a bright flashing light so your child won’t miss a visitor or delivery. They have different chimes and melodies so your child can find which is easiest for them to hear and wireless models can be moved around the home. Some models can also alert them to the phone ringing or other loud noises. A personal paging system can alert your child to a wide range of things around the home. They can wear a pager clipped to clothing or a vibrating wrist unit (like a watch), and use a strobe light, an alerting alarm clock or a vibrating pad at night. It will flash, light up or vibrate strongly to alert them. They can set up transmitter units so they’re alerted to the doorbell, an intercom (for example, in student flats), or phone calls, texts or other alerts. Personal paging systems are commonly provided by social services. A doorknock beacon clips over the top of the door and flashes brightly when
36
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someone knocks on the door – good for personal privacy. There are a number of apps to alert users to loud noises such as alarms or doorbells. Alerting apps shouldn’t be used as a substitute for specialist smoke alarm or personal paging systems though.
Keeping safe day and night Personal safety is vitally important and you can get a specially designed smoke alarm system which can include fire, smoke and carbon monoxide detectors. These will have a strong vibrating pad to alert your child at night. The local Fire and Rescue Service may be able to provide these systems for free. Another option is a personal paging system with integrated smoke alarm and carbon monoxide detectors. If there’s an existing smoke alarm system installed, for example in student accommodation, then you can use a personal paging system or a standalone unit called a Deafgard which is commonly used by students and in hotels.
0808 800 8880 • www.ndcs.org.uk
TECHNOLOGY
We asked two deaf young people what technology they use to help them live independently.
Keeping to schedule Without you around to help organise them, technology could come to your child’s rescue. To wake up in the morning (or afternoon!) a vibrating alarm clock is ideal. These have very loud alarms, bright flashing lights and powerful vibrating pads. A vibrating watch can be useful for daytime reminders. If they have classes, courses, meetings to attend or a busy social life then a smartwatch (like the Apple Watch, Pebble or Samsung Gear) could prove vital. It connects with their smartphone and links with their calendars, providing alerts. It’ll also tell them if they receive a call, text, email or social media message and allow easy replies. Try the apps My Class Schedule: Timetable or myHomework Student Planner which are designed to help students organise their classes, coursework and assessments. The Next Generation Text Service app allows easy conversations between people who communicate using voice or text. It’s ideal for conversations with the bank or doctor. www.ngts.org.uk
For more information and user reviews of these products, other helpful products and our Technology Test Drive loan service, go to www.ndcs.org.uk/technology. To find out more about the apps mentioned above, go to www.ndcs.org.uk/apps. www.ndcs.org.uk/livechat • 0808 800 8880
Top tip
I’m a student nurse therefore I use a lot of technology! I had to get a vibrating fire alarm for when I’m on night shift as I’m then home when there’s no one else in the house. I use the Fire Angel Wi-Safe2 – the vibrations are really strong so it can sit under my mattress. The local fire brigade fitted this free of charge. I also use the VibraLite3 vibrating watch. This is extremely good, the battery lasts for ages, the vibrations do wake me up and it’s so easy to use. I use a doorbell too, which has an adjustable volume and the flash is bright. Sophie (19) who is profoundly deaf
Get in touch your c with hild’s local s servic ocia es to fi nd out l they c if an this eq provide uipme nt.
Sophie
I’m a university student living in a hall of residence and I use a flashing fire alarm and a doorbell. Both were supplied by the halls but not until I’d been there for a month! I also use an alarm clock to wake me up. My fire alarm has two flashers: one in my room and one in the kitchen. The flashing is not easily ignored in the daytime, although it hasn’t yet woken me from sleeping. It’s designed to pick up high frequencies like fire alarms but it’s very sensitive to other noises and it goes off when I, or my flatmates hoover or play music, and is even triggered by normal conversation/laughter at times. It worries me that if it does go off in the case of a real fire, I might just assume someone’s playing music! The doorbell works well but unfortunately people forget to use it or don’t notice it next to my door. It’s also not very helpful if I’m in the shower. One of the best pieces of technology I own is my Shake Awake portable vibrating alarm clock. It’s very effective at waking me up with a start. When the alarm goes off the whole bed vibrates! I also use my Roger Pen radio aid all the time – it’s really handy for lectures, tutorials, assessments and spontaneous teacher/student meetings. It’s the same size and shape as a pen so it’s discreet and easy to carry around – ideal for when I meet my friends in noisy places. Zanna Zanna (19) who is profoundly deaf
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Father time It can be tough being the parent of a deaf child, especially if you have no previous experience of deafness. Two fathers tell us their experiences of meeting other dads at their local group.
Find your nearest group at www.ndcs.org.uk/ findalocalgroup or for more information about local groups have a look at www.ndcs.org.uk/localgroups.
LOCAL GROUPS
My wife Vicky and I first became involved in our local group four years ago, soon after our second daughter Isobella was born. Our eldest daughter Olivia is seven and hearing. Before we found out Izzy was deaf we were rather ignorant about the deaf community. As we are both teachers and proactive people we wanted to learn more and see what we could do to help, so we joined our local group. We met with lovely people who helped us, supported us and have now become our great friends. For me, the most important part was seeing other dads and being able to talk to them about things. I knew it was difficult for my wife, but as a dad you feel as though you need to be the strong one. I soon realised that this was also a feeling experienced by the other dads and being able to share these thoughts was at first a little strange but helpful. About a year ago one of the members, Mike, started a specific dads group. As often as we can, we meet and talk about different things from the latest technology, the difficult experiences we might be facing, to a fundraising event that we’re planning – rowing the length of the River Tamar. Through the group I’ve also had the opportunity to meet with deaf adults. As a dad you want your child to be happy, healthy and independent and at times the worry is that in reality this might not be as easy as you wish. It’s important to go out and meet deaf role models and to know that one
I’m Brian and I’m chairman of Flintshire Deaf Children’s Society. I’m married to Nicola and we have two sons, Dylan who is seven and Haydn who is four. We found out that Dylan was severely to profoundly deaf when he was six months old. When I found out Dylan was deaf I was in denial. There was no deafness in my family or Nicola’s so we really didn’t know what to do. It wasn’t until Nicola forced me to go along to a family weekend that (after a few beers!) I finally opened up. Speaking to the other dads helped me realise that they felt similarly. It was a real turning point for me and after that they couldn’t shut me up! We started Flintshire Deaf Children’s Society five years ago. To begin with it was just me and the mums but over the past few years it’s really changed. All of our events are open to the whole family and we try to plan them around football tournaments and rugby matches so the men don’t have an excuse not to attend. The highlight of our group is the signed pantomime performance that we go to every year – it’s just brilliant. Every dad wants to see their kid
www.ndcs.org.uk/livechat • 0808 800 8880
day your child can grow up to be like that. I’ve recently become involved in the youth club part of our local group which again has allowed me to meet and work with deaf teenagers who can act as role models for the younger children. We recently took the group away on an outdoors survival day to Dartmoor. They got involved in all sorts of outward-bound activities such as building their own fire and shelter and preparing their own food. It was brilliant to see them really push themselves and develop in confidence. It’s been great getting stuck in with the group; it doesn’t just have to be the mums! Izzy being born has really changed our lives, our circle of friends and our outlook on life. I’ve gained so much from our local group – I’ve learnt a lot and it’s opened my eyes to a new community. In particular I have valued the friendship of other families and being able to share our hesitations, questions and concerns with one another, especially the other dads. Matthew, Plymouth and District Deaf Children’s Society
happy at Christmas and it’s one of the few times that we can enjoy something as a whole family. Being involved in the group has opened my eyes to the deaf world – I’ve learnt a lot. I might be the chairman but I’ve still got a deaf child and I am constantly learning from the other families and professionals that are part of the group. When I meet with other dads I try to encourage them to join the group because I want them to find the support that I did. I don’t want dads to sit in silence or deny it like I did. Admitting my son was deaf was the best thing I ever did and being part of the group has helped me show him that I understand his world and that I am and will always be there for him. Brian, Flintshire Deaf Children’s Society
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Reviews
Books and products for deaf children – tell us what you think!
Would you or your child l ike to write a review for magaz Families ine? E magaz mail ine@n dcs.or g.uk. Key In this issue we’re reviewing resources which might be particularly suitable for the following ages/categories:
Look No Words series By James Eves Axiom Ltd £6.99 each (from www.looknowords.co.uk) 0–4
ACN
Maya and I reviewed the Look No Words set of three books featuring a calf called Mood, entitled An Angry Mood, A Loving Mood and An Excited Mood. All three books are wordless, enabling the reader to explore each story at his/her own pace through the use of illustrations, learning about moods and feelings. Maya loves looking at books and these three grabbed her attention straight away with their bright colours and emotive, detailed illustrations. She didn’t say or sign much at first but very quickly followed my lead. We practised the sign/word for ‘angry’ and she practised making angry red faces herself! Her older hearing sister and brother also joined in and they all acted out various stages of being angry and turning their faces red. 40
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Our whole family has thoroughly enjoyed these books. The wordless format has meant Maya can flick through them on her own or with others. The detail in the illustrations is pitched just right, not too overwhelming at first glance but always plenty to discover on each additional read. I would highly recommend these books to any parent that wishes to help their child explore and express feelings whilst improving vocabulary and storytelling skills. Michaela, mother to Maya (3) who has mild to moderate hearing loss and Maya and wears bilateral Michaela hearing aids.
0–4
5–10
14+
ACN
11–13 Children with additional complex needs
Sonic Traveler alarm clock Geemarc RRP £28 5–10
11–13
14+
ACN
I wanted to try out a product that would help my deaf son to wake up on his own in the morning, without me having to go into his room to wake him. The Sonic Traveler alarm clock worked very well for him; the vibrating pad is useful as it fits under his pillow and the vibration is very strong so it eventually wakes him up. This alarm clock has given my son independence and I don’t have to wake him up anymore! Afaf, mum to Suffian (19) who has a profound hearing loss.
0808 800 8880 • www.ndcs.org.uk
REVIEWS
Pedius app Pedius Srl First 20 minutes free, then £24 for a year’s subscription 11–13
14+
Pedius is an app that allows deaf and hard of hearing people to make calls using speech recognition. You can start a conversation by writing a text message and it will send it to your contact using voice. Pedius can also translate speech to text, if you find it easier to read text. The first 20 minutes are free and then it costs £24 for a year’s unlimited use. The app was easy to download and quickly syncs all your contacts. However, the instructions weren’t very clear so we spent a long time trying to work out the features. When you make a call the app highlights a ringing signal, which is useful if you can’t hear the ring tone, and when the caller talks it translates speech into text fairly
quickly. However, when using the text-to-speech feature as the listener I found that the app would repeatedly say ‘the user is typing’, which I found annoying. It’s good to see that developers are trying to make it easier for deaf people to communicate and we’re excited that this technology may improve over time. However, I think it needs more work before it’s completely user-friendly. I’m not sure we’d pay for this app and the 20 free minutes ran out before we had really got used to it. Lucinda (12) who is moderately Lucinda deaf and wears bilateral and sister Esmee hearing aids.
Me to You: Let’s cue – First word book (introduction to using cued speech) By Carly Simpson Access CS Publishing £9.99 0–4 This is a fabulous hardback book with good examples of words from all letters of the alphabet. There’s a picture of the object, the written word and photos of Carly cueing the word in ‘steps’ showing the hand shape and placement, along with the lip pattern. There are lovely colourful pictures and it’s a great sized book – not too big or too small. This book is helping us teach both Alfie and Summer words relating to objects, letters, fingerspelling and breaking up the words into phonics. Sarah and Ross, parents to Alfie (5) who has a severe to profound Summer Alfie hearing loss and Summer (3).
www.ndcs.org.uk/livechat • 0808 800 8880
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Helpline
What do you think of our information?
Freephone 0808 800 8880 helpline@ndcs.org.uk www.ndcs.org.uk/livechat See www.ndcs.org.uk/helpline for details of our opening hours and free interpreter service. Q. My child’s starting university this year. What support can we expect from the university?
A. Under the Equality Act 2010 (England, Scotland, Wales) and the Disability Discrimination Act (Northern Ireland), all universities have a duty to make ‘reasonable adjustments’ so that deaf and disabled students are not at a disadvantage. All institutions have a student support or disability office responsible for delivering the university’s commitment to equality. This means making sure the reasonable adjustments deaf students need are in place and that any recommended actions from their Disabled Students’ Allowances (DSAs) needs assessment are carried out (see www.ndcs.org.uk/dsa). They may also have information about types of support and ways of studying that deaf students haven’t thought of before. In many institutions, disability support services are on campus, open all day and can be walk-in or by appointment. Your child can speak to the disability support office before they start to make sure the university understands their needs and arrangements are in place for when they start. They’re also there for your child throughout their university life if they have questions or concerns. Remember, not all adjustments cost money. Your child may also want: • to request extra time to finish assignments • to ask for handouts in advance • to request information in alternative formats • to create a personal profile to detail their support needs and tips on deaf awareness (see www.ndcs.org.uk/profiles) • more one-to-one sessions with their tutor/lecturer • study support.
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Phonics and the Development of Your Child’s Reading and Writing Skills This factsheet is for parents who would like to know more about phonics and how it can be used to help children learn to read and write. You can find out how phonics is taught and how you can make sure your child benefits as much as possible from the teaching of phonics. Our Parent Review Panel recently reviewed the factsheet before we updated it to help us improve it. Here’s how their suggestions made the final factsheet better: 1. We rewrote the section on why learning phonics is important, after getting a greater appreciation of the barriers parents foresee their deaf child may face. 2. The panel offered their own tips and suggestions to support the teaching of phonics. We added in some of these and used it as an opportunity to link to our online communities (Parent Place and Facebook) where parents can ask each other for advice on phonics. 3. We broke up some of the text to help improve its readability, as the panel found the original factsheet quite dense.
You can fin final fact d the s www.ndc heet at s.org.uk / phonics.
Would you like to help us improve our information resources? Join our Parent Review Panel by signing up to NDCS Listens (see opposite). 0808 800 8880 • www.ndcs.org.uk
What’s new from us?
OUR RESOURCES
Mild hearing loss, major impact What type of information is it? Booklet and video available at www.ndcs.org.uk/mildmoderate. Who’s it for? Mainstream teachers What’s it about? The impact a mild hearing loss has on a child in the classroom and what teachers can do to make sure your child can hear as well as possible. You might also like: our information on glue ear at www.ndcs.org.uk/glueear.
Breaking the Sound Barrier – A guide to recruiting and supporting deaf colleagues What type of information is it? A booklet available in print or to download from www.ndcs.org.uk/breakingdownbarriers. Who’s it for? Employers recruiting deaf people What’s it about? Making the recruitment process and workplace accessible to deaf people. You might also like: Personal profile: employment, also available from www.ndcs.org.uk/breakingdownbarriers.
Employment vlogs What type of information is it? Videos available on our website at www.ndcs.org.uk/breakingdownbarriers. Who’s it for? Deaf young people who are applying for jobs or currently employed. What’s it about? Videos of deaf young adults in a range of jobs speaking about their experiences and their advice to encourage deaf young people to get the support they need in employment and during the job application process. You might also like: our new video for parents/carers of deaf young people aged 15–18 to show practical ways they can support their child to access opportunities and support to fulfil their career aspirations.
Join NDCS Listens and help make our information even better Join NDCS Listens, our new network of people affected by childhood deafness who want to improve outcomes for deaf children. There are loads of ways you can get involved and help us improve our information, services and publications. We need reviewers, people to take part in surveys and focus groups, and families to share their stories or simply tell us what else they need. Go to www.ndcs.org.uk/ndcslistens for more information.
www.ndcs.org.uk/livechat • 0808 800 8880
Supporting deaf young people through transition What type of information is it? A booklet available to download from www.ndcs.org.uk/leavingschool Who’s it for? Professionals working with deaf young people in England What’s it about? Tips on how to support deaf young people aged 16+ make choices about further education, university, apprenticeships and employment. You might also like: the rest of the leaving school section of our website. www.ndcs.org.uk/leavingschool
If you’ve registered on our website www.ndcs.org.uk you can order or download publications: click Family Support and then Order and view our publications. Or contact our Freephone Helpline on 0808 800 8880 (voice and text) or email helpline@ndcs.org.uk.
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? n o s ’ t a h W EE events coming FR c ti as nt fa f o ts lo e av We h st a few of them. ju f o er st ta a s e’ er h d up, an Summer residential programme for 8–18 year olds
Weekends for Families with Deaf Children aged 0–2 years
Our interactive residential summer programmes have lots of activities for young people to try. The four-night residentials are targeted at young people aged 8–18 years and age groups are specific to each event. Young people can work towards an award and/or get involved in life skills workshops.
Aimed at families who haven’t attended any of our events before, these non-residential weekends are an opportunity to get a better understanding of topics around deafness, communication and learning through play and reading. The events will be led by our experienced staff, and specialists will join us to share their knowledge and understanding.
Explore the Outdoors 25–29 July, Kilve Court Nr Bridgewater, South West Mission Adventure England 25–29 July, Kielder, Northumberland Mission Discovery Scotland* 1–5 August, Blairvadach, Dunbartonshire Mission Adventure Scotland 1–5 August, Blairvadach, Dunbartonshire Multi-Activity (16+) Transition 8–12 August, Lichfield Multi-Activity (8–15 year olds) 8–12 August, Lichfield
8–9 October, Bexley 15–16 October, Bristol
Learning about Your Child’s Deafness A one-day event ideal for families with a deaf child aged three to 12 years who has been diagnosed in the last 18 months. This information day is aimed at families who haven’t attended any of our events before. It provides a safe and relaxed environment to meet other families, share stories and increase understanding of topics around deafness, communication, technology and audiology.
Mission Adventure Wales 16–20 August, Monmouthshire
18 June, East Midlands Airport
Multi-Activity (16+) Life Skills 22–26 August, Ashford
3 September, Stirling
Multi-Activity (8–15 year olds) 22–26 August, Ashford
Events application process We have an applications process for all our events for deaf children and young people. Once you’ve sent us your application form, we’ll contact you to discuss it. We’ll then confirm if your child has a place about eight weeks before the event. We advise you to send in your application forms as soon as possible. See www.ndcs.org.uk/events for more information on the application process, specific application deadlines (typically 11 weeks before the event) and to download application forms.
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2–3 July, Harrogate
NDCS Families • Summer 2016
9 July, Blackburn
24 September, Cardiff
Starting School – Education rights and responsibilities A one-day event ideal for families with a deaf child age two to four years. This information day is aimed at families who want to learn more about how to support their deaf child at school and how to enforce their and their child’s rights. You can also share tips and experiences with other families. 25 June, Liverpool 9 July, Telford
*Funded by the Short Breaks Fund, Shared Care Scotland 0808 800 8880 • www.ndcs.org.uk
EVENTS
e f i l n i t r a t s t s e b The Thanks to the newborn hearing screening programme, Joanne found out her son Oscar was deaf when he was just a few weeks old. She went along to one of our weekend events to see how she could support Oscar from a very early age.
We hold free events all over the UK for deaf children, young people and their families. Download our events calendar from www.ndcs.org.uk/events.
www.ndcs.org.uk/livechat • 0808 800 8880
Oscar failed his newborn hearing screen and after more tests we were told he was severely to profoundly deaf. He received his first hearing aids at just six weeks old. Our audiologist told us about the National Deaf Children’s Society and we went along to one of their weekend events when Oscar was three months old. We wanted to find out more about deafness and the options available, and to meet other people who were going through the same thing. The best part was hearing the life stories of deaf volunteers and finding out how much they had achieved in their lives so far. Everyone we met – both professionals and families – was so helpful. We learnt that communication is not just about talking and that facial expressions and pointing to objects are just as important to Oscar. We got tips for teaching our other son Max (3) who is hearing, how to communicate with Oscar, like looking at his brother when he talks to him. It’s a really useful event for families to attend after finding out their child has a hearing loss. It makes you realise that you’re not alone. We were very upset when we first found out that Oscar was deaf. The thought that he would never hear my voice was heart-breaking. Finding out about Oscar’s hearing loss early on has made a big difference though – it’s meant we’ve been able to take steps
to help him hear. If it wasn’t for the screening we still might not know about Oscar’s hearing loss. I still get upset but with the support of our family and our Teacher of the Deaf Oscar is getting the best help and support for his hearing loss. He’s a very happy little boy. In the future we hope that Oscar has the same opportunities as a hearing person and that his hearing loss won’t hold him back. Joanne, mum to Oscar, who is 8 months old.
Early support at our family weekends Our weekend for families with deaf children aged 0–2 has lots of workshops to help you support your child’s development right from the start. There are sessions on communication and technology, and the opportunity to hear real-life stories from deaf adults. A mobile crèche company will care for your children, with different activities for them to take part in throughout the day. To find the event nearest to you go to www.ndcs.org.uk/events.
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When I’m a
grown-up Do you ever wonder what your deaf child will do when they grow up? Deaf people share their experiences of the world of work, including how their employers and colleagues adapt to their needs. I’m a video editor and a director of photography because… I enjoy the end result. It’s truly satisfying to deliver good work that originated from a brief, on time and under budget. I’m profoundly deaf and use hearing aids. I spent 10 years in TV commercial advertising and I’m now working freelance. I shoot and cut short-form video content and photography for clients and advertising agencies. I also produce and design content. I believe that deafness is no barrier to success. I got to where I am now by having great belief in myself. It’s about persistence and working hard to achieve what you really want, in the face of adversity. My parents also helped me What does your child enormously – they were an inspiration want to be when they and paved the way for my success. grow up? The highlight of my career was For more information on editing a video that won a pitch with a careers, check out our section multinational drinks company. My video about life after leaving was so successful it was also used by school at the CEO of one of the world’s largest www.buzz.org.uk/ advertising and PR agencies. myfuture. Nicholas Mugridge
I’m a copyright and licences officer at a university because… I love helping people – it makes my day when I resolve a tricky query. I interpret and give guidance on copyright law relating to university activities. I run training for staff and students, manage a small team of IT trainers and contribute to the strategic direction of digital training. I’m profoundly deaf and use equipment to help me participate fully in meetings, use the phone and make video/conference calls. I also have a beautiful hearing dog, Chester. He’s a great support and helps to raise awareness.
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ROLE MODELS
I’m an animal shelter receptionist because… I love making sure that animals get the happy and contented life they deserve. It’s a joy to work there and of course there are cuddles with lots of lovely animals! I’m the first point of contact for the public, in person and on the phone. I maintain a register of the animals, look after the shop and provide an administrative service to staff. No day is the same! I have a profound loss in my left ear and a partial loss in my right ear. I’ve always been quite confident and outgoing, so there were no real barriers. I wear a name badge with a hearing impairment logo when I’m working. This really works as people can see the symbol, understand what it means and adjust their behaviour. I also have a special headset that plugs into the phone system, so the sound is louder and clearer. I achieved a distinction in my Level 3 Dog Behaviour Diploma and volunteer with Guide Dogs for the Blind. Harriet Almond
Working in frontline customer services is quite challenging at times. It’s best to be upfront and explain to people that I can’t hear them very well. Most people are really understanding. I’ve presented at national conferences and went to parliament to speak with MPs about my experience of being deaf in the workplace. I’m also a keen musician – I play the clarinet and sing. Ruth MacMullen 0808 800 8880 • www.ndcs.org.uk
For residential and day pupils aged 3 - 19 years
"We are thrilled and very proud that our son is going to university. The journey started at St Johnâ&#x20AC;&#x2122;s where he has had excellent teaching and the staff really believed in his potential. The support he has had from the school has been amazing."
ST JOHNS
"All students leave with a range of qualifications and accreditations which prepare them exceptionally well for the next phase in their education or the world of work"
"A nurturing and caring ethos which is promoted throughout school is reflected in the caring attitudes pupils show each to other and adults alike" Ofsted 2015
For more information or to arrange a visit please contact: Mandy Dowson, Parental Support Manager, St Johnâ&#x20AC;&#x2122;s School for the Deaf, Church Street, Boston Spa, West Yorkshire, L23 6NE
T: 01937 842144 F: 01937 541471 E: info@stjohns.org.uk W: www.stjohns.org.uk
Where every voice is heard and celebrated
Why I think you should visitâ&#x20AC;Ś
nnah Allen,
by Ha ver designed rk Diary Co
Year 10
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â&#x20AC;Ś Mary Hare School ! Year 7 Entry Information Day, Friday, 30th September, 2016 To book a place or to arrange an individual visit, please contact Natalie Ross: (n.ross@maryhare.org.uk or 01635 244215) or visit our website www.maryhareschool.org.uk/events
Family Fun Day for deaf children and their siblings, 11th June, 2016
This Fun Day is a collaborative event, with CICS, Elizabeth Foundation and Mary Hare Primary School, plus many other deaf organisations and local NDCS groups, please contact Natalie Ross for more details. or visit our website www.maryhareschool.org.uk/events
Securing the future of deaf children and young people