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Autumn Winter2015 2014• •Issue Issue3835

towards a world without barriers...

towards a world w

towards a world without barriers...

towards a world

towards a world without barriers...

Auditory brainstem implant

Leia’s groundbreaking hearing technology

HAMILTON LODGE School & College

Education and Care for Deaf Students from Primary to FE

OFSTED CARE REPORT 2015 – GOOD WITH OUTSTANDING OUTCOMES FOR RESIDENTIAL PUPILS “The care offered to young people is very supportive and nurturing.” “The variety of activities in which residential pupils partake enables them to develop social skills, friendship groups and confidence. The school actively promotes the presence of the residential pupils in the wider community and this enables them to feel valued and not isolated. Examples of activities have included completion of Duke of Edinburgh Awards with pupils from mainstream schools and who are able to hear.” “They benefit from having their needs met in an individualised manner which enables them to make significant progress. Being part of the residential group means that many of the residential pupils are not isolated and that they can enjoy meaningful and enjoyable relationships with their peers. ‘If I wasn’t here, I would be lonely, it’s my second home’ is a comment from a residential pupil.” “Residential pupils have a number of activities available to them. These include activities arranged by the school as well as an opportunity to attend clubs and other interests delivered by other organisations, such as Brownies and Scouts. As a result, they are able to widen their interests and circles of friends.” If you are wondering about the benefits of a specialist deaf education for your child and would like to come and see us please contact the Principal, David Couch on 01273 682362 (voice and minicom) or email

HAMILTON LODGE, WALPOLE ROAD, BRIGHTON, EAST SUSSEX BN2 0LS Telephone: 01273 682362 Fax 01273 695742 Minicom: 01273 682362 Email:




Registered charity in England: Hamilton Lodge (Brighton) no. 307066. Registered in England company no. 544254.


Hayley’s starting college

18 Raising the Bar

Autumn 2015 • Issue 38



8 Zanna’s victory


sing Rai the

competition winners

If your child is starting college or university this autumn don’t forget to make sure they have all the support they need in place, like Tiger Mother with Hayley (p15). Education professional Nicki Harris offers her expertise about this on p33 and 20-year-old Kieran shares his top tips for university on p27. You can also read about our Young People’s Advisory Board member Zanna’s victory on Disabled Students’ Allowance on p8–9. Have you ever worried that your child won’t be able to enjoy music? Check out the special feature on our Raising the Bar competition winners on p18–19 who have proved deafness needn’t be a barrier to enjoying music and dance. Also, p24–5 recounts how Lewis hasn’t let unilateral deafness stop him becoming a guitar pro. Hopefully you’re all set for your child’s new school or school year. If any new teachers or classmates need some deaf awareness reminders we have resources at and don’t forget you can call our Freephone Helpline if you need any extra support. We hope you find this issue helpful and we’re always happy to hear any feedback at

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 Raising the Bar Special feature on our competition winners 20 Early years COVER Leia’s auditory brainstem implant 22 Primary years Mild deafness – major effects 24 Transition years Guitar pro! 26 Young people Could your child advise NDCS? 28 Additional needs A clash of two spectrums 30 How do I...? ...make sure my family has access to health information?

Information, services and events Karen Harlow, Editor email:

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: Alexandra Jordan • 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: Printing: Printed in the UK by The Magazine Printing Company 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.

33 Ask the expert 34 The school year 36 Technology 38 Local groups 40 Reviews 42 NDCS 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: Website: Freephone Helpline: 0808 800 8880 (v&t) NDCS Families • Autumn 2015


news & views

Follow NDCS on Twitter:

NDCS on Facebook:

Free communication support and interpreters for events

The Clarion Community Chest offers deaf people access to events through the provision of free BSL/English interpreters or communication support. Examples of situations where their services could be used include parties, medical appointments and festivals. The sessions can be used any day of the week at whatever time suits the deaf person. Their goal is to provide 100 free sessions over the year. For more information visit

Deaf tip awareness ly – Speak clear ly or not too slow too loudly.

British Sign Language (BSL) Scotland Bill The BSL Bill has successfully passed Stage 2 and is on course to become law in September 2015. Stage 3 will involve a debate followed by a final vote by MSPs. If passed, the legislation will provide a framework for the promotion of BSL as a language. The Scottish Government will be required to prepare and publish national BSL plans aimed at the promotion and facilitation of BSL in national bodies. Also, certain listed authorities will be required to produce their own plans. We welcome the Bill and believe that it could act as a critical step in strengthening the position of the language in Scotland.

Scotland attainment inquiry

NSPCC Underwear Rule – keeping deaf children safe from abuse The NSPCC has launched a YouTube video of its Underwear Rule guidance to help keep deaf children safe from sexual abuse. The film, which is in BSL and includes subtitles, aims to encourage children to share secrets that upset them with a trusted adult. It’s designed to allow parents to start easy conversations with their children without having to mention difficult words like sex or abuse. It teaches them that their privates are private and that their body belongs to them. The video can be found at underwearrule (the video for deaf children is at the bottom of the page) or on YouTube. 4

NDCS Families • Autumn 2015

Earlier this year, the Scottish Parliament Education and Culture Committee launched an inquiry into the educational attainment of pupils with a sensory impairment, which we responded to. Key themes identified were the shortage of teachers and support staff qualified to work with deaf learners, the role of technology in schools to support deaf learners and the early intervention and monitoring of deaf children’s progress and language development. We will use the conclusions in the committee’s report to shape next steps in our work on closing the attainment gap for deaf learners.

0808 800 8880 •

NEWS & VIEWS > Impact of mild deafness

No one took Honor’s mild hearing loss seriously

Wales: Draft law on additional learning needs The Welsh Government has published a draft new law outlining changes to the way in which children and young people’s support needs are assessed and planned for. This includes replacing statements and Individual Education Plans with Individual Development Plans. Originally, the intention was to pass the law before the Assembly elections in May 2016, but the Education Minister has announced that this will be postponed. We welcome aspects of the new law, but we also have concerns. A consultation on the draft law is underway and we will work hard to ensure the needs of deaf children and young people are highlighted. For more details visit IDPWales.


How autism and auditory neuropathy spectrum disorder interact


Helping Hands peer support toolkit launch event




an difference to n deaf childre g n u yo d an people!

rks with cher who wo Are you a tea ple? Join us for a free peo to set up a deaf young how rn lea to nt . training eve your school t scheme in peer suppor

FREE event!

Tuesday 13 October 2015 10.30am–2.30pm When? Orange Studio, 7 Cannon Street, Where? Birmingham B2 5EP Who? For teachers and pupils aged 10–18 • • We’re running a free event for teachers and pupils to • find out how to run a deaf peer support scheme and .reid@ndcs.o > Email: isabel how it can improve school life. On the day we’ll also launch the new Helping Hands* peer support toolkit resource, which is a step-by-step guide to setting up a peer support scheme for deaf pupils. Please email before 20 September to confirm your place. Tuesday 13

Lunch s nk and drided provi


5, 10.30–2.30p

October 201


Stre dio, 7 Cannon Orange Stu B2 5EP Birmingham

pupils Teachers and attend e to are welcom ing Hands the deaf Help by ired Be insp dies. trained bud young s from deaf tion enta Watch pres teachers. people and impact of a ut the positive and Find out abo peer support scheme f dedicated dea rove school life. imp how it may

Book your place by 11 July 2015 (places are limited, so book now!)

Lottery Lottery through the Big is funded by the National The Helping Hands project 1016532 in England and Wales no. NDCS is a registered charity . and in Scotland no. SC040779


We helped secure over £3 million in benefits! During 2014–15 we helped secure a record sum in benefits for deaf children and their families, topping £3 million for the first time. We support families to get benefits by identifying entitlement, helping with forms, writing letters and gathering evidence. We also support families with formal proceedings in courts and tribunals. To find out about benefits visit

Cycle South Africa Would you like to challenge yourself and raise money for NDCS at the same time? Our new overseas cycle ride for 2016 is going to be in South Africa! Visit www. challenges for more information. Stars.indd 1

*Helping Hands is funded by the National Lottery through the Big Lottery Fund

Do you want to help us make a difference to deaf children, young people and their families? NDCS Listens is your chance. Whether you’re a parent, young person, carer or family member, we’d love to hear from you. You’ll be joining a network of people affected by childhood deafness who want to improve outcomes for deaf children. You can choose from a wide range of activities depending on what suits you. To find out more visit www.ndcs. • 0808 800 8880

Unilateral deafness won’t stop Lewis playing the guitar


NDCS Listens

> A clash of two spectrums



> Guitar pro!

02/06/2015 11:45

Donations from Amplicomms sales

We’re very grateful to telecommunications company Amplicomms, who have pledged to donate £3 to us from each sale of HS100 LR headphones for the next three months. NDCS Families • Autumn 2015


A FREE-to-use, web-based international video signed dictionary designed to make sign language available to everyone.

This online dictionary is a self-learning tool. Simply type in a word, click on a flag and see a relevant sign language video clip. More than 200,000 signs from 20 different countries are currently in the database which can be download for FREE through Apple and Android apps.

WWW.SPREADTHESIGN.COM The UK team along with their 14 European Partners continue to undertake dissemination activities throughout 2015 to highlight this project. For details of where we are exhibiting please call 01302 386701. This project has been funded with support from the European Commission. We continue to develop the online dictionary and welcome any feedback on how we can further expand and improve the website dictionary.

Doncaster Deaf Trust

For further information, please contact the UK team on

or email:

A National Centre of Excellence

01302 386701

AGM3070 Spread the Sign Half Page Ad 190x136mm AW.indd 1

30/03/2015 09:41

Learn, grow and flourish

We’re moving 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


NDCS Families • Autumn 2015

Tel: 020 7391 7040 SMS: 07970 626 197 Fax: 020 7391 7048

Frank Barnes School for Deaf Children

0808 800 8880 •


Can you help us shape deaf children’s futures? We need to know what’s most important to you. As an organisation we’re always striving to give the best support we can to deaf children and their families, and have recently started working on our long-term plans for the future. This is an important time for NDCS. Decisions we make over the next year about our strategy will affect how we work and what we do up until 2022. We’re committed to engaging with our members as we consider our future. As we think about how we can make best use of our limited resources we’d like to know what’s most important to you.

I’m inviting all our members to take part in the next NDCS membership survey. This will be carried out during November 2015 and will give you the chance to tell us what you think of our ideas for our new strategy. Keep an eye on our Facebook page and e-newsletters for other opportunities to share your opinions or contact our Freephone Helpline for further information. This is your opportunity to help shape deaf children’s futures. Over the next year we’ll provide regular updates about our strategy development so you know how we’re

progressing. I look forward to sharing plans with you and working towards a bright future for deaf children. Susan Daniels OBE Chief Executive Officer

Listening Bus on tour During April and May the Listening Bus, our NDCS Roadshow, went on tour to the North East and Yorkshire and Humberside. We’ve had a fantastic time meeting the children and staff of the schools we’ve visited and delivering our workshops including Technology, My Future, which helps deaf pupils consider their options after leaving school, and our deaf awareness workshop, Look, Smile, Chat, to the pupils. We also attended the open day of the newly formed local group Sound NDCS in Wakefield, and an information day event held by Kirklees Deaf Children’s Society where we met families from Dewsbury and surrounding areas to talk about the technology and support available to them. The Big Cake Bake has also been key to some of our visits and special thanks go to the staff and pupils of Bailey • 0808 800 8880

Green Primary School for presenting us with a cheque for £200, as well as everyone at Gartree high school who raised £68. Our next stops are Eastern England and London. Look out for our new look Roadshow. If you’d like to know where the Listening Bus will be visiting, or find out how to book a visit for your school or event, you can find our schedule and download a booking request form from uk/roadshow. We look forward to seeing you! NDCS Families • Autumn 2015


Zanna’s victory

on Disabled Students’ Allowance Fearing the government’s plans to cut back on Disabled Students’ Allowance (DSA) might threaten her chances of success at university, Zanna, 18, took action. Zanna is a member of our Young People’s Advisory Board from Cumbria. She is profoundly deaf in her right ear and severely deaf in her left, and has applied to a number of universities to study art and design or fashion courses. To get the support she’ll need to follow lectures, group discussions and question and answer sessions between students and lecturers at university, Zanna will be reliant on DSA. What is Disabled Students’ Allowance (DSA)? DSA provides vital support for disabled students who go to university. It’s given to over 60,000 students each year to help pay for specialist support such as equipment and accommodation. Deaf students may use the money to pay for a notetaker for lectures or for equipment such as a laptop, or flashing fire alarms to keep them safe in halls of residence. For some students DSA is essential for them to be able to complete their studies. 8

NDCS Families • Autumn 2015

Proposed cuts Last year, the Department for Business, Innovation and Skills announced plans to cut back on DSA, handing over responsibility for supporting disabled students to universities. We opposed these changes from the start because it wasn’t clear that universities could or would pick up the costs. We feel it was wrong for the Government to push ahead with these changes without being clear how it would make sure universities have adequate funding and are transparent about what they will or won’t offer. The changes threatened to leave disabled students at risk of having to go without the support they need, and with no new legal rights to do anything about it. When the Government makes major changes like this, it’s expected to do so fairly and to consult widely and openly on whether its proposals are a good idea and if there are ways to manage the risks. It didn’t do this in relation to the proposed cuts to DSA and we were shocked that it was

planning a change that would severely threaten disabled students’ access to higher education without consulting them at all. This announcement meant Zanna was now uncertain she’d get the support she needed and she was so worried at this prospect that she decided to do something about it. In January this year, with our support, she was given permission to bring judicial review proceedings against the Department for Business, Innovation and Skills to challenge whether it was lawful for them to ignore disabled students when consulting on the proposed changes. The judge granted permission for the review to proceed and stated she was ‘not impressed’ with the Department’s argument that there wasn’t a duty for them to consult.

0808 800 8880 •


Zanna says:

Our support for Zanna In support of Zanna’s case, we put forward a witness statement expressing that the Department for Business, Innovation and Skills had failed to open a public consultation on its proposals for DSA or to give students any legal right to challenge it. We were concerned that the decisionmaking process had been unclear, with papers produced that were difficult to find and understand for students like Zanna who rely on the support of DSA. We also stated that it’s unrealistic to expect higher education institutions to cover the costs and that no clarification had been given on how they would be held to account if they didn’t make reasonable adjustments to fund support for disabled students. • 0808 800 8880

“Without DSA, I feel un iversity wouldn’t be an option for many people like me. We have a right to the same opportunit ies as everyone else and shou ld be consulted about major changes that could affect our ed ucation and future.”

In March we received the very welcome news that the Government has postponed its plans to limit DSA for disabled students. The Department for Business, Innovation and Skills issued a statement saying “there are concerns that some [higher education] institutions are not yet in a position to deliver a fully accessible service to students, and that this may result in a negative impact for some students.” Zanna has sent a strong message to the Government that no changes that affect disabled people should be made without their involvement and we’re extremely proud of her, although we’re disappointed that it was necessary for her to take legal action to force them to listen. The plans have only been postponed, not abandoned, so we’ll

continue to work hard to ensure that the Government introduces any changes in a way that means disabled students still get the right support, with proper safeguards in place if universities fail to pick up any extra costs. In July, the Government opened a consultation on proposed changes to DSA and we worked hard to make sure it was accessible to deaf students like Zanna. In the meantime we wish Zanna the best of luck with her university applications. Well done Zanna!

Be the first to hear about campaign wins like this and how to get involved – join over 6,000 others in the NDCS Campaigns Network.

NDCS Families • Autumn 2015


“I wanted to give something back to say thank you…” 95% of what we do is funded by voluntary income, most of which is raised from the extraordinary efforts and generosity of people like you. Sam’s top tip “I held a fundraising party to boost my sponsorship.”

Sam raised £700 doing a skydive “I chose to skydive for NDCS because myself and my five-year-old are both deaf and NDCS has provided a lot of support and guidance for many years. I know NDCS would help us at the drop of a hat. I chose to skydive as all my family and friends knew I was terrified and therefore it spurred them on to sponsor me more as it wasn’t easy for me to do. I was terrified and cried on the day, but afterwards I felt a great sense of achievement and pride.”

Richard raised £1,700 cycling from London to Paris “I find it hard to accept help ‘for free’ but NDCS supplied events and masses of information with everyone always being very proactive, so I signed up to cycle from London to Paris. After finishing I felt physically great and glad I’d put in plenty of training. Inspired, I signed up to ride Nightrider. My deaf son, Daniel, got involved and chose my fancy dress outfit for the ride!” 10

NDCS Families • Autumn 2015

Lauren raised £1,460 running the Virgin London Marathon “My son Bobby is deaf and I wanted to give something back to say thank you for the continued support we receive from NDCS so I signed up for the Virgin London Marathon. Sharing my online fundraising page on social media was easy and generated loads of sponsorship. I also asked for donations at the end of the month when people had been paid. I got in touch with my local paper too and they ran a story with a photo. I received three more sponsors from readers of the article!”

Lauren’s top tip “Organise a Big Cake Bake to help with fundraising – Bobby got involved so it was a nice way of making money together.”

You too can fundraise for NDCS, so we can continue to support you, our members, and your families. We’d like to invite you to take on a fundraising challenge or community fundraising activity. Please visit or call us on 020 7014 1199 to find out more. 0808 800 8880 •


Spell out ! t r o p p u s r u yo

Get your kids and their d school or group involve in Fingerspellathon this October. Last year over 200 schools, Guide and Scout groups signed up to Fingerspellathon to learn the British Sign Language (BSL) fingerspelling alphabet and raise money for us. This year, we want even more schools and groups to sign up and take part to raise deaf awareness, improve their fingerspelling skills and help to raise vital funds. You don’t have to be able to fingerspell to organise the event – adults and children can learn together! We can offer you: • free online resources – sponsorship forms, word lists, assembly ideas and much more

Organising your Fingerspellathon is as easy as ABC:

• fingerspelling postcards • videos online to help with learning to fingerspell


• support from the NDCS team to help with your fundraising. It can be as easy or as challenging as you wish. Here are some suggestions for how to fundraise:

register for Fingerspellathon



• get sponsored to learn the BSL fingerspelling alphabet

g  et spelling – learn the BSL fingerspelling alphabet

• choose a list of words and get sponsored to learn them • turn it into a competition – simply get sponsored per word, set a time limit, such as two minutes, and see how many words everybody can spell correctly in that time. The winner can be crowned the fingerspelling champion of the school or group


 et sponsored – give a sponsorship g form to each child taking part and get sponsored for every word they learn to fingerspell.

• ask for a contribution from everybody to take part in your Fingerspellathon, such as £2 per child. To get involved or find out more, have a look at or call 020 7014 1199. • 0808 800 8880

NDCS Families • Autumn 2015


M9000 The first Smartphone designed for users with hearing loss

• Extra loud volume 100 times louder than standard mobiles • Highest rating of hearing aid compatibility M4/T4 • Built-in SOS button at rear • Dual Sim Card option • 5 Megapixel rear, 300K front camera / Wi-Fi / Bluetooth / Internet Browser / Email / Music Player / Video Recorder / Multifunctional Calendar / GPS / 3G • Over 1 million apps available from the Google Play Store

Until 31.12.15 amplicomms will donate £3 from the sale of every HS100 headset to NDCS Enjoy your music amplified at top quality directly from any Smartphone

No more compromises. HEAR every word loud and clear. available to purchase from Action on Hearing Loss • email: • Telephone: 03330 144525 • Textphone: 03330 144530


Share & support

Recent discussions: Deaf awareness training University Unilateral deafness

Many families with deaf children use Facebook and Parent Place, the NDCS 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 and During Deaf Awareness Week we shared some deaf myths on Facebook. Here are some of your responses.

Deaf myth: “My deaf child won’t be able to go to a mainstream school” My daughter goes to a mainstream school. The school has been fab – they have added things such as soft furnishings, lowering the high ceilings, carpets and rugs. Her grades are excellent! <<<Facebook user>>> My child is currently in the process of moving to a different mainstream school that has a deaf base so she will be able to tap into support as often as she needs. <<<Carol-anne Govan>>> Myth – my six-year-old is doing fantastic! He has a moderate loss. He has a Teacher of the Deaf visit once a month, and has fantastic support with teachers, a teaching assistant and his classmates. He is on a level with his classmates and above for his reading! We’re so proud of him. <<<Nicola Kay>>> My son has a moderate/severe hearing loss and started in mainstream school last September. He has a soundfield system and has just got a radio aid. He’s really struggling. His Teacher of the Deaf and the school say there’s nothing to worry about, but I feel like we’re just being fobbed off. <<<Facebook user>>>

Deaf myth: “Deaf children can’t enjoy music” My 13-year-old son has sung in school choirs and is now learning to play the piano. <<<Facebook user>>> I have just put my severe to profoundly deaf son to bed, and can hear him singing his version of The Wheels on the Bus. When he hears music he points to his hearing aids and dances. With more deaf awareness this stigma can change. <<<Facebook user>>> Embarrassed to say that when my son was diagnosed with a moderate loss this was something I asked audiology almost straight away. Stupid and so wrong. He loves music, is always singing and moans if the radio is not on. <<<Facebook user>>> Music is and always has been really important to my son. Also he went to a preschool playgroup run by our local hearing support service where music always played a part. Singing and signing is such a brilliant way of learning to sign. <<<Mary Cole>>> For more information on choosing a school for your child see choosingaschool. To find out how deaf children can fully participate in music activities see • 0808 800 8880

NDCS Families • Autumn 2015


Cued Speech makes spoken language visible

Does your baby or child  have problems hearing the English language OR  not hear English at all? Cued Speech (CS) is a simple system which uses hand shapes to fully clarify the lip-patterns of normal speech. When you use it as you talk, your deaf baby or child can easily learn English*. It will complement aids or implants and can give access to education at school.

Cycle home or away

The discovery of CS and what it could do for our son and for us as a family was profoundly liberating and lifechanging and continues to be thirteen years down the line. *It can also be used with other spoken languages & alongside BSL.

Contact us for free information and details about low-cost training.

T: 01803 832784 E: W:

to Join us in South Africa a cycle 440km, or take on e challenge closer to hom at Sign up to ride with us www.ndcschallenges.o

Charity registered in England and Wales No 279523


At Westgate College we continue to build upon the knowledge and skills that young people have gained through their school education. Students have access to a range of qualifications and support appropriate to meet individual needs. We offer vocational and non vocational programmes from 16 yrs onwards.

Our farm

The Royal School for Deaf Children Margate caters for children who have hearing impairment and additional needs including emotional, behavioural or medical problems. We can also meet the needs of children with communication difficulties.

Our college

Our school


Our farm offers a range of programmes, work experience and apprenticeship placements.

The Royal School for Deaf Children Margate & Westgate College Victoria Rd, Margate, Kent CT9 1NB. Telephone/Textphone: 01843 227561 SMS: 07797 800015 Fax: 01843 227637 School email: Website:

Part of The John Townsend Trust RSD A5 2012 130x186.indd 1

02/04/2012 10:30


Sounding off! It’s a whole new phase of life for moderately deaf Hayley as she prepares for her first term at college. She and Tiger Mum are determined to make sure her needs will be met from the outset… Tuesday morning, outside Hayley’s college Hayley and I are walking away from the vast buildings of the college that will be her new base for the next two years. We’ve been to a meeting with Dan from the additional needs team. The college seemed keen on promoting the support they can offer, so that gives me big hope. But then, bearing in mind how the special educational needs co-ordinator (SENCO) at Hayley’s secondary school was full of talk when Hayley started – of the support they could offer, how Hayley’s needs would be communicated to her subject teachers – and how little of it came to fruition, I’m wary. At college there’s no involvement from the Teacher of the Deaf who assessed Hayley termly at school, so I found myself feeling quite business-like about asking exactly what support they can provide. Dan asked what support we wanted – exam access arrangements please (25% extra time and a separate room), we said, like she had at school. I explained that her deafness and slow processing skills entitled her to it. Dan said they’d give her a 45-minute writing assessment, then decide what support she needed. He said they’d put her on a six-week support trial initially, with copies of notes taken by the support and learning assistant (SLA) each lecture, plus help with assignments, then decide how much of it was needed ongoing. So far, so good. Battle-weary and wiser, I asked whether staff had any deaf awareness knowledge or training. I said I could send them some NDCS resources to help. He • 0808 800 8880

confidently responded that there were two BSL signers, and assistive technology. That’s great, but Hayley doesn’t use sign or radio aids. I tested the water a bit further, mentioning classroom acoustics. Dan said Hayley could sit at the front by the lecturer. I said there was more to it than that – Hayley needed to be able to see the lecturer’s face clearly so she could lipread. I said deaf awareness was important; lecturers needed to realise that answers given by Hayley’s classmates in response to questions form part of the information everyone takes in – but would be lost on Hayley if they were sat behind her and she couldn’t see/hear them. A simple remedy is the lecturer always relaying the answers back to the class, so that Hayley too has the information. Dan was clearly unaware of the issues, floundered a bit and said he’d never worked with deaf students before, so I again offered to send some NDCS resources, and he said okay. As we walked to get our train afterwards, I expected a telling-off from Hayley about being difficult and embarrassing her, but was surprised when none came. “They seem much more helpful than school were,” she said, sounding hopeful. “Especially if they get the information.” So that’s both of us that have moved on then. Cause a fuss, call them out. Don’t be fobbed off or assume they know best and will put everything into place. We made that mistake before.

> Read Tiger Mother’s blog at: If your child is starting college then check out our information at NDCS Families • Autumn 2015


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 @

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!


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. My son Harry is my superstar because he’s just learning to talk and can do a few signs too. He’s a fearless explorer of his little world and doesn’t let anything get in his way! Sophie, mum to Harry (1) who is mild to moderately deaf

Poppy was born with microtia of the right ear but this doesn’t hold her back one bit. We recently moved and she’s our superstar for settling into her new school like a star! We’re so proud of her for making new friends and learning new things. Amy, mum to Poppy (5) who is deaf in one ear

I’m so proud of Natasha, who has endured 25 operations due to numerous health issues. She lost her hearing due to bilateral cholesteatoma and now has two bone-anchored hearing aids and is doing amazingly at school, including going on a school trip to Holland. Jeanette, mum to Natasha (14) who is severely deaf • 0808 800 8880

Mikey was diagnosed with a profound hearing loss from birth and has had hearing aids since he was six weeks old. He’s made fantastic progress learning sign language and can sign all sorts such as train, bus, chicken, pig and thank you. Well done our little superstar! Aimie, mum to Mikey (2) who is profoundly deaf

Lincoln is profoundly deaf in his left ear with moderate hearing loss in his right, but he doesn’t let it hold him back. He is a green belt at taekwondo and a national champion after winning gold in his last competition. He makes us so proud. Warren, dad to Lincoln (8) who is severely deaf We’re so proud of Neri. Born at 23 weeks she beat all the odds, simply by surviving. She has moderate deafness and found it a challenge to settle into mainstream school, but with a change to a school that met her needs she has now settled in so well and become a little superstar! Nola and Carlos, parents to Neri (8) who is moderately deaf

My son Luke is four and in full-time mainstream school. He wasn’t diagnosed with bilateral moderate hearing loss until he was 18 months old. He has a language delay and his learning is behind but he never stops trying. I’m so proud of him and all his continued effort and abilities. Emma, mum to Luke (4) who is moderately deaf

What has your deaf child done to make you proud? No matter what level of hearing loss your child has or however big or small the achievement, we want to hear about it! Whether you’re a proud parent, sibling, grandparent, cousin, aunty or uncle – get in touch. Email, and we’ll feature a selection of the responses we receive in the next issue of Families magazine.


Raising the Bar

g n i s i Ra the

Earlier this year we ran a competition to find talented young deaf dancers and musicians to prove that deafness isn’t a barrier to achieving in music and dance. 12 lucky winners, ranging from moderately to profoundly deaf, attended a masterclass directed by leading deaf professionals at the Birmingham REP Theatre in the West Midlands. The two-day event enabled each of the young stars to work with their workshop leader to increase their skills and confidence for a live performance to an audience of 70. As well as performing their solo, they each took part in a group dance routine or music ensemble. Kia Lee (13) m fro ) (12 Emily James from Nuneaton Brynhyfryd, Wales Kia’s performance to Maps by Emily wore Madilyn Barley was her pink mesmerising and dancing outfit graceful, keeping the audience appropriately engaged throughout. to Pink’s Just Give Me a Reason. “At my dance school I’m the only We loved her ongoing smile The dance group performed a deaf child so I couldn’t wait to and professionalism during her routine incorporating new styles work with other deaf dancers.” beautiful performance. taught by workshop leaders Billy “I’ve been dancing since I was Read and Ava M Blake from deaf four and love it. I’d like to be a dance crew Defmotion. Lydia Mackett (14) dance teacher when I’m older.” from Gosport

nce a d e h T oup gr

Connor McPhilbin (11) from Manchester

Connor freestyled in his audition, but when the showcase started, he had perfected his routine to such a brilliant standard we couldn’t believe our eyes! “I love learning new dance moves and having fun. I love dancing and performing on stage and showing everyone what I can do.”

Joshua Aihe (10) from Birmingham Joshua performed to Uptown Funk with gusto and amazing character, donning his famous trilby hat! “I want to get involved in dance at a high level – especially street dance. I’d love to meet some famous dancers and learn new moves!”

Lydia dazzled the audience with her skill, dancing to Demi Lovato’s Skyscraper. “I’ve been dancing for 11 years and it’s always been my passion. I’ve performed in numerous productions in London.”

Naomi Rafferty (15) from Ballymena, Northern Ireland Naomi’s style and timing were spot on as she danced with confidence and skill. “I was thrilled to have an opportunity to learn more about all genres of dance. Dance is one of the greater passions I have.” 0808 800 8880 •


usic The m group

Danny Lane, from charity Music and the Deaf, and deaf musician and teacher Ruth Montgomery led the music group. The group created a 12 bar blues piece, playing together and each doing some live improvisation.

Adam Butler (13) from Halifax (drums) Adam bravely took to the stage without a backing track, entrancing the room with his amazing solo. “Although I have a hearing loss I want to show others they can enjoy music and take it to new levels. There are no boundaries or limits!”

Elizabeth Sadler (13) from Wistaston (clarinet) Elizabeth played Shhh No 1, 10 to Go which got everybody tapping their feet to her impeccable rhythm. “I really enjoy playing my clarinet at school in concert and used to take part in the Deaf North West Youth Orchestra.”

Keir was used to playing the piano but played the keyboard confidently and with the lightest touch. “There’s no reason why deaf young people can’t excel at music and I want the chance to show what can be done if people believe in us!”

Matthew English (10) from Orpington (violin) Matthew opened the showcase with his beautiful solo, Annie’s Song, on his snazzy blue violin. “When I play my violin I forget about my microtia atresia and I like being Matthew who plays the violin. I like to make people happy when I play!”

Sophie Wiseman (11) from Chiswick (violin) Sophie mesmerised us with her rendition of Rieding’s Concerto in G Major 1st Movement on her violin. She was totally absorbed in her performance. “I’ve been playing the violin since I was four. I go to Wells Cathedral School, one of the four specialist music schools in England.”

You can watch a film of the event at raisingthebar. For more information about how we can support deaf children to enjoy music and dance, contact • 0808 800 8880

Thomas Bratton (10) from Co. Durham (piano and euphonium, a baritone horn)

Keir Fenton (11) from Holmfirth (piano)

One of our youngest performers, Thomas played the piano during the ensemble and also did a wonderful rendition of the Blackadder theme for his euphonium solo. “My ambition is to enter the Young Musician of the Year competition to show that there are no barriers to doing whatever you want to do!”

Our 12 young stars were received with a standing ovation. A big well done to you all!

ll “I just wanted to say we the done and thank you for e. nc most amazing experie ly My daughter has literal ild,” ch come back a different — parent “WOW! Just WOW! ed Ever ybody who perform for really did raise the bar d an sic deaf children in mu dance!” — audience member The event showcased the and potential of deaf children music, d an e young people in danc them to how important it is for y enjoy the s take part in activitie ing and how everyone, includ ve ha themselves, should high expectations of what they can achieve. They all raised the bar. NDCS Families • Autumn 2015


Leia’s auditory brainstem implant A rare form of deafness meant normal hearing technology wouldn’t benefit Leia, 4, so parents Bob and Alison pursued a ground-breaking solution: an auditory brainstem implant (ABI).


our-year-old Leia is a bright bundle of energy and is just starting to talk. Parents Bob and Alison use a combination of speech and sign to communicate with her as her speech begins to develop, but it’s been an emotional rollercoaster to get to this point. After Leia was diagnosed profoundly deaf, they investigated cochlear implants. “We were devastated, initially,” says Alison. “We felt confused and on our own.” They were even more shocked when an MRI scan revealed Leia had inner ear abnormalities with no visible auditory nerves. As a cochlear implant works when sound is converted into electrical signals which stimulate the nerves in the cochlea and then travel along the auditory nerve to the brain, without these nerves the implants wouldn’t work. “That was worse than being told she was deaf,” says Alison. “We’d been led to believe she could have them – she’d have 20

NDCS Families • Autumn 2015

hearing and she’d do really well.” However, the audiologist suggested a new option that only a handful of children born without a cochlea or auditory nerves in the UK had tried: an auditory brainstem implant (ABI). “It was highly invasive,” says Bob. “There were only a few children in the world with one. Most had been done in Italy.” From the outside an ABI looks the same as a cochlear implant, with an external processor worn on the head, but the internal part (a receiver and a number of electrodes) is surgically implanted into the brainstem, bypassing the ear and auditory nerves, to provide a sensation of hearing. As there was little data on ABI outcomes, it was hard to predict how much sound it could give Leia access to. Alison and Bob faced a difficult decision. “We familiarised ourselves with the process, the prognosis and the risks,” says Alison. “It was invasive brain surgery, which is very different

to a cochlear implant, and there was no guarantee something might not go wrong or when they switched the implant on that it would work. There could be side effects, like numbness in the throat and pins and needles in the arms and legs from the current that goes through to the brain. We thought long and hard, but we decided it was worth it to give Leia an opportunity to have a spoken language and some sort of hearing. Something that meant she could cross the road safely and hear traffic for example.” Having made their decision, they contacted Italy, and were also referred to Professor Saeed at a London hospital. “Within minutes of meeting him we knew we wanted to stay in London,” says Bob. “He put us at ease. It was then about funding, which was difficult, but we argued that the cost of an ABI is basically the same as cochlear implant surgery.” Fortunately, the family had a lot of support from their local MP. 0808 800 8880 •

EARLY YEARS Leia was 22 months old when she had 12 electrodes implanted into her brainstem. “It was an emotional time because you’re aware of the risks,” says Alison. “But she had an excellent team of experts, including people from the company that make the ABI. It was hard, but we felt we did the right thing.” They were pleased to be told the surgery was a complete success. Six weeks later, the day before switch-on, Leia’s implant was tested but no response was received from it. “We were thinking ‘what have we done?’” says Bob. “That was probably the worst 24 hours of my life.” “The switch-on was strange,” remembers Alison. “We weren’t sure what to expect because an ABI is never going to be as good as a cochlear implant. They tried clapping and all sorts of things with Leia. She didn’t look like she was responding, but they said you could see it in her eyes and she was blinking. They were quite pleased, but we felt not much happened. But on the journey home she responded to the tube doors, turning to look when previously she hadn’t. A couple of weeks later we noticed her turning for loud noises and that was the start of it.” Two years on, Leia is doing very well with all 12 electrodes fully functioning and no real side-effects. “She responds very well to high frequency sounds, so if you call her name from another room she comes. We’re starting down the road of spoken language. It’s early days, but it’s definitely made a difference,” Alison says. Leia also now shows interest in TV and music. “At a party, when the music starts, she starts dancing,” smiles Bob. “And she repeats sounds she’s getting from the TV.” Leia’s hearing is now into the range expected by a cochlear implant user. “The experts didn’t think that would happen this soon, so they’re very happy with her progress,” says Bob. But because so few very young children have had the procedure in the UK it’s difficult to judge. “There’s nothing to benchmark her against,” says Alison. “They don’t really know what Leia’s sound sounds like to her.” Bob and Alison advise other parents of children with no auditory nerves to be open to all options. “It feels quite daunting to talk about brainstem implants, and it isn’t for every family, but go and listen to what the experts have to say before you make any decisions,” says Alison. “I like to think that Leia will have the same opportunities as any other child, whether she has a spoken language or not. We’d like to think we’ve given her the best possible start to achieve that.”

“They don’t really know what Leia’s sound sounds like to her.”

There is more information about ABIs on our website at

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Your autumn checklist for the pre-school years Resources for early years settings

If your child is starting a new crèche, nursery or pre-school this term, our resources Supporting the Achievement of Deaf Children in Early Years Settings (booklet) and Early Years Matters (DVD) could help the staff understand your child’s needs. Contact our Freephone Helpline for copies or download them from

Weekly planner

If the autumn means the start of new routines for your family, our magnetic weekly planner could help explain new activities to your child. It enables use of photos, pictures and other visual aids to help them understand what will happen and when. To find out more and to order visit

Family Sign Language

Family Sign Language (FSL) uses signs designed for family life, such as for stories, games, food, sleeping and nappy changing and is a great introduction to British Sign Language (BSL). Check out our FSL website to help you learn.

Glue ear

Glue ear is a condition that causes temporary deafness and is more common in the autumn and winter months due to colds and coughs. If your child suffers from glue ear have a look at

To watch Bob and Alison talk about their experiences of Leia’s ABI check out our video at ndcswebteam. • 0808 800 8880

NDCS Families • Autumn 2015 NDCS Families • Autumn 2014

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anya looked at the printout of her daughter’s latest hearing test. Honor, who’d just started school, suffered from glue ear and was tested every six months. It was the usual result – some hearing loss just slightly below ‘normal’ range. Nothing needed to be done, the specialists said. But before long Tanya would find out how wrong they were. Tanya and husband Simon first suspected things weren’t right when Honor was 18 months. “She’d been the happiest baby, but at 18 months she changed and became a naughty, grumpy little girl with bad temper tantrums,” says Tanya. They’d experienced nothing like it with Honor’s sister Macy, two years older, and whereas Macy had begun talking at one, Honor had trouble communicating. “She’d often ignore us when we called her,” says Tanya. “Her speech wasn’t good, it was slow to come and she mispronounced things and missed off initial consonants and word-endings. We could understand but other people sometimes struggled. “She was behind with other milestones like potty-training – it was a nightmare, she just didn’t understand and it didn’t happen until she was over three. Looking back I think her tantrums were frustration at being unable to understand or communicate, as well as pain from constant ear infections.” When Tanya asked the health visitor, she did a basic hearing test, standing behind Honor with a box which made noise. “Honor passed because it wasn’t subtle enough to detect a mild loss,” says Tanya. Then aged three, Honor had a particularly bad infection but their GP refused antibiotics, so in desperation Tanya took her to a walkin centre. A nurse treated Honor, then asked if Tanya had concerns about her hearing. “I said yes and she advised us to see an ENT consultant and gave us a letter for our GP. At last someone was taking our concerns seriously,” says Tanya. A consultant diagnosed glue ear; he said her eardrums were in such


NDCS Families • Autumn 2015

Honor’s sister Macy


Mild deafness – major effects Tanya was shocked when she learnt just how much her now seven-year-old daughter Honor’s mild hearing loss affected her – yet no one took it seriously. a poor state that she’d not be hearing much at all. Honor’s adenoids and tonsils were removed and she had a grommet in her right eardrum and a myringotomy (a small incision made to relieve pressure) in her left one. “It was a huge relief,” says Tanya. “After surgery, her hearing was a little down but within ‘normal’ range and it was as if someone had flicked a switch. Her speech came on

“No one took her hearing loss seriously until she had a hearing aid”

instantly. She started pronouncing most sounds and word-endings. It wasn’t perfect and she still misheard sometimes, but it was a million times better. And she began interacting with everyone, whereas before she’d been quite introverted. Her behaviour improved too.” By the time Honor started school in September aged four, other than sometimes mishearing, her speech was at the same level as other pupils her age. Then following an ear infection over Christmas, Honor’s teacher told Tanya that Honor wasn’t learning at the same rate as her classmates. Honor’s consultant arranged for a Teacher of 0808 800 8880 •

the Deaf, Kate, to assess her. “I showed Kate all the hearing tests,” says Tanya. “She said that with those results she’d normally give a child hearing aids. I was pretty surprised and got quite upset. The audiologist had previously said it’d be really unusual for a child with those levels to be aided. But Kate saw it differently – in a learning environment even a mild loss affects children hugely. She said Honor wasn’t hearing initial consonants and had learned to lipread. The hairs stood up on my neck – it was really shocking that my little girl had this skill and I didn’t know.” That summer, after her fifth birthday, Honor had a hearing aid fitted in her right ear. When she returned to school at the start of Year 1 in September they really saw the difference. “That year she learnt to read,” says Tanya. “It was an emotional time; I’d doubted that she would.” Honor’s behaviour improved even more and now aged seven, though a year behind her age group, she’s making progress. “The school is very receptive,” says Tanya. “I have sometimes emailed them information from the NDCS Helpline, such as tips on acoustics, and her teachers do deaf awareness training.” Socially too, things have improved. “Honor’s made friends at school,” says Tanya. “I did used to worry about that.” They also joined their local group. Honor was keen when Tanya told her about the youth club. “She said, ‘Please can I go, I’ve never met anyone else with hearing aids,’ so we went along – and I’m so glad,” says Tanya. “Just meeting others with hearing aids made everything seem normal. I saw lots of kids with deafness who were succeeding in education, it gave me hope. Honor’s got such a big gap to catch up on; it’s great to know she won’t struggle forever. “I feel a bit of a fraud when people ask if she’s deaf and I say ‘well not really’. She is only mildly deaf but even so it has had a big effect. With mild deafness, others don’t realise they’re not hearing well. No one took her hearing loss seriously until she had a hearing aid.” At her annual review at the end of June Tanya was delighted to be told Honor’s hearing had improved and she no longer needed her hearing aid. “They’re monitoring her every six months in case it dips back down again, but her results have improved loads,” beams Tanya. “Because of the glue ear she still has a build-up of liquid in her ears, but as she gets older that should clear, so her hearing should get even better.” No child should have to struggle because of misconceptions about the impact of mild or moderate hearing loss. Find out more, including a report into the experiences of children with mild and moderate deafness and how we’re supporting them at


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Your autumn checklist for the primary school years Films for teachers

Our Here to Learn films provide tips on how best to teach a deaf child for staff who have little or no experience of working with deaf children. Showing a new teacher good and bad practice can be a useful way of explaining what your child might need. Watch the films at heretolearn or call our Freephone Helpline to order them on DVD.

Communicating with classmates

If your child has new classmates this term, we have resources to help them communicate better with your child, including Talking to your Deaf Friends posters and postcards. Order from www. or for more deaf awareness tips see toptips.

Teaching phonics

Phonics is the relationship between letters and sounds and is a key tool for learning to read and write. We have information, for both parents and teachers on teaching phonics to deaf children at uk/phonics.

Listening environments

Is your child’s classroom the best possible listening environment? Our factsheet for parents Creating Good Listening Conditions for Learning in Education explains why good listening conditions are important and how they can be improved. You can download it from acoustics. • 0808 800 8880

NDCS Families • Autumn 2015


Guitar pro! 11-year-old Lewis hasn’t let his profound unilateral deafness stop him from becoming a guitar pro…


arents Vicky and Scott first noticed Lewis’s hearing problems when he was about 18 months old. “One time he hurt himself in his bedroom while I was in the bathroom,” remembers Vicky. “He was upset and I called him to come to me but he couldn’t work out which room I was in. I thought he’d know from the sound of my voice.” Lewis started having hearing tests at the age of two and was getting a lot of ear infections and glue ear – a problem also experienced by his sister Amelia, now eight. “He had three lots of grommets,” says Vicky. “His hearing was a problem in both sides to begin with and he was temporarily given a hearing aid for his right ear.” At age six Lewis completely lost hearing in his left ear but it was restored in his right. “He had an MRI scan because they couldn’t work out why he was so deaf in his left ear,” says Vicky. “But it came back inconclusive and they put it down to damaged nerve endings. They asked whether at any point there had been an illness.” Lewis was given a hearing aid for his left ear about two years ago to help with identifying the direction of sounds but he didn’t take to it well and is currently without hearing technology. “I didn’t like wearing it because it gave me a headache and didn’t help me,” he explains. “I worried about Lewis’s future, the things he wouldn’t be


NDCS Families • Autumn 2015

able to do job-wise,” recalls Scott. “I wondered why it was happening to him. But because it was a gradual process it wasn’t much of a shock,” Vicky adds. “Lewis is quite introverted. He tends to hide himself away and isn’t much of a people person – sometimes I’m not sure if that’s him or the deafness. We’ve had a few issues with people saying he’s got an attitude. I have to explain that it’s because he finds it hard to communicate, so to deal with that he goes into himself and socialises in small groups.” “To be honest, I sometimes worry about people thinking I’m ignoring them,” admits Lewis. But watching Lewis play blues on his electric guitar it’s clear he’s found where he really shines. “Playing the guitar makes you confident,” explains Lewis. “It gives me a way to express myself. “I started out by playing guitar hero and that got me into rock music. I got really good and then got a real guitar and played a lot.” “He was about eight,” adds Vicky. “He’d spend hours playing; it was quite shocking to hear him. We’d often wonder if it was him or the computer!” Lewis started having lessons when he was nine. “I could play quite well but I didn’t know theory or note reading,” he explains. “My teacher Matt sits opposite me, towards

“I worried about Lewis’s future”

0808 800 8880 •

TRANSITION YEARS Lewis’s guitar teacher Matt says… “I’ve been teaching

my right side, so I can see the guitar Lewis for two years now and and lipread.” “He he’s one of the most gifted and wasn’t fazed by hardworking students I’ve ever teaching Lewis at met. I treat him the same as all, which put me at any other of my students and ease,” says Vicky. reposition myself on his Vicky and Scott think right side if he hasn’t Lewis’s guitar playing will heard me.” benefit him greatly in the future. He’s already passed his grade 1 with distinction and Matt thinks he’ll be able to skip a grade or two. “Once he gets to grade 5 or 6 it’s an extra GCSE he’ll have,” says Vicky. “And if he completes all the grades he’ll have an A-Level. School have been supportive and invited him to play guitar in assembly, which was a massive confidence boost for him and gave his peers a chance to see him in a different light. “Lewis has really surprised us with the guitar. I’d say always encourage your child if they show an interest in something. Even if you think they won’t benefit because they’re deaf, let them try!” High school will be a new challenge for Lewis, and with the absence of a hearing aid he’ll have to tell new friends about his deafness. “Only a handful of his friends are going to the same school,” says Vicky. “It’s much bigger than he’s used to, but I think he needs a change now. We’ve been to the open day and spoken to the special educational needs co-ordinator (SENCO) but it’s still a worry because of all the different classes and teachers. We’ve just got to see how it goes.” Looking to the future, Vicky would love Lewis to get a boneanchored hearing aid (BAHA) because there are some situations where he struggles, like the school dining hall. “Lewis isn’t keen on a BAHA and it’s not something I’m going to force upon him. I’ve tried to explain the benefits but I think he doesn’t want to be singled out because at the moment there aren’t any visual signs he’s deaf. When he’s university age he might feel differently.” And going to university is already something Lewis has decided upon. “Lewis has never struggled with school even though he’s got a hearing problem,” says Vicky. “I think he’ll achieve anything he puts his mind to. I hope he realises that.”

“Playing the guitar makes you confident”

For information about the effects of unilateral deafness, visit If your child is showing an interest in music, you may find our guide How to Make Music Activities Accessible for Deaf Children and Young People helpful.

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Your autumn checklist for the primary to secondary transition years Secondary school video clips

Our short films provide simple and easy-to-follow guidance for mainstream secondary staff to ensure that deaf pupils can fully participate in the curriculum and achieve their full potential. There are specific clips for English, maths, science and modern foreign languages teachers. The films are available at uk/supportingachievementclips.

Look, Smile, Chat

Our Look, Smile, Chat resources (including films and lesson plans) show how simple steps can make a big difference to your child and their classmates feeling confident in communicating with each other. Have a look at looksmilechat.

Starting secondary school

Is your child starting secondary school this term? It can be a daunting time, especially for a deaf child. Check out our video My Deaf Son and Moving to a New School at ndcswebteam for some top tips on how to manage the transition.


Most deaf children enjoy their time at school, but bullying can occur. If you’re concerned, we have resources for parents, professionals and young people which could help. bullying

NDCS Families • Autumn 2015


Could your child advise NDCS? Former Young People’s Advisory Board (YAB) member Liam tells us why your child should join our next board.


e believe deaf children and young people should be at the heart of decision-making here at NDCS, helping to guide the services we deliver, and that’s where our YAB comes in. We’re searching for 18 deaf young people aged 11–18 to make up our fourth board starting in December. Liam, former YAB member, reflects on his time on the YAB and why he thinks other deaf young people should get involved. It’s been over a year since I joined the NDCS YAB. The role of the YAB is to work closely with NDCS and help them with their campaigns and projects. After finding out through NDCS’s website for young people, the Buzz, I decided to apply. “I chose to join because I’ve always liked to voice my opinion on issues that matter to me. My deafness is one of the main things I’m passionate about, and being able to share my thoughts and opinions with other like-minded, deaf young people from across the UK seemed like a great opportunity. “I’m also a huge fan of meeting new people. I’ve been to four YAB residential weekends since March 2014 and I’ve met some great deaf role models, made new contacts and friends for life in my fellow YAB members. “In terms of campaigns, as well as Zanna’s success with Disabled Students’ Allowance (see p10–11), other members of the YAB went to numerous party conferences to meet MPs and ask key questions concerning deaf young people. In particular, the board contacted the Department for Education to tell them our thoughts on teaching assistants. We’ve also contacted the NHS and health commissioners 26

NDCS Families • Autumn 2015

about local audiology services. Overall, the YAB’s campaigning work has been impressive! “But that’s not all. We’ve helped NDCS with designing leaflets about the Local Offer, vision statements, and have shared our thoughts on resources that they create. “I recommend getting involved in the YAB. Opportunities like these are so important because there are endless benefits to both you and the organisation. You can make new friends and develop new skills, as well as making a key difference. “For deaf young people, I can’t recommend the YAB enough!

There are lots of exciting things on the horizon for the next board, which will last eighteen months, and we can’t wait to get our next YAB dream team together. Do you know a deaf young person aged 11–18 who wants to: • meet other deaf young people • share their views and ideas • champion deaf children and young people’s rights • make a positive difference? We want to hear from them! Applications are open. The deadline is 11 October 2015. If you’d like further information about the YAB, please email or call 020 7014 1130. To download an application form please visit

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Kieran’s university survival guide 20-year-old Kieran, who is moderately deaf in his right ear and moderately to severely deaf in his left, is in the second year of his BA Primary Education course at University of Strathclyde. Why did you decide to get into primary school teaching? I want to be a role model for children and to show that it doesn’t matter what differences you have, such as disabilities, you can be a success and achieve in your life. What communication support do you use at university? I use radio aids, deaf awareness and note takers. A radio aid allows me to clearly hear what the lecturer is saying. The deaf awareness means lecturers and students are aware of the best way to communicate with me. The electronic note-takers type what is being said by students and lecturers, so if I don’t understand I can look at the note-taker’s laptop. I’m also doing a work placement at a primary school where I have a communication support worker who signs what the teacher and children are saying, so I can fully access all information. How did you get this support in place? I applied through the disability department after I started university. I realised I should have asked for support before I started. I was given the opportunity but turned it down. This was a big mistake and made it harder to put things in place, therefore I always advise prospective students to ask for all the support they can get and see how things go. Deaf awareness was non-existent at first, as lecturers turned around while speaking, although this has now improved. How have you got on socially at university? I’ve got on really well – I’ve made lots of friends. I make sure all my friends are deaf aware, by instructing them on the best way to communicate with me. I’ve also been involved in the Continuous Professional Development (CPD) Society where I’ve now been voted in as Lead Vice-President. The society is deaf aware, to an extent, but there are always things people can improve on. Who do you go to now for any support needs? I can speak to my lecturers, who are an incredible help and very supportive with any issues. There’s a specialist person in the education department that deals with any issues within lectures and another specialist person in the disability department that deals with technology issues, such as radio aids. What are your top tips for a deaf young person about to start university? Ensure you have all the support you need, try it before you start university to ensure it’s right. Never be afraid to stand up for yourself if there are ever any problems with support. Enjoy university, your deafness should be celebrated and not seen as a barrier – the only barriers are the ones the university creates and they can be removed. Also, most importantly, have fun!


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Your autumn checklist for young people aged 14+ Making friends on the Buzz

If your child aged 12–18 would like to make friends with and chat to other young deaf people online, tell them to have a look at our Buzz website They can search for friends by name, location or interests – all conversations are moderated and so are safe. makingfriends

Does your child travel independently?

It might be useful for them to know about the emergency SMS service, which lets deaf, hard of hearing and people with speech difficulties in the UK have an SMS text conversation with the police, ambulance service, fire and rescue, or coastguard, just in case. For more information, download our free guide How Technology Can Help from or request from our Freephone Helpline.

Apps for school work

Our apps resource includes apps that could help your child with their school work, including supporting literacy, revision and problem-solving as well as some fun, educational games. Have a look at educationapps.

For more information on options for your child after they leave school, check out We also have advice on support in further and higher education on p33. • 0808 800 8880

NDCSNDCS Families • Autumn 2015 Families • Spring 2015

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A clash of two spectrums Andrew (6) is autistic and has moderate to severe hearing loss due to auditory neuropathy spectrum disorder (ANSD). Parents Laura and Rik tell us how the two conditions interact and how they decided on the right school for Andrew.


ndrew’s school bus drops him home and he bounds through the door and up into his dad’s arms, smiling with delight as they spin around. Andrew, who has autism and hyposensitivity – meaning he thrives off stimulation – is a happy boy who loves rough play, musical toys and trampolining. “Take him to a new environment and he’s off at the other end of the room,” says Laura. But it was a rocky start for Andrew, who was born 11 weeks premature. “We thought we were going to lose him,” says Rik. “After his birth they found a bleed on his brain and the paediatrician didn’t know how that would affect him,” remembers Laura. “Whether he would have visual, hearing, speech or cognitive problems, they had no idea.” So when Andrew failed the newborn hearing screening and further tests showed he had ANSD, the couple were relieved it was only deafness. “They thought he was profoundly


NDCS Families • Autumn 2015

deaf at first,” says Laura. “But that was complicated by the autism that they couldn’t see in such a young child,” explains Rik. “There’s no way of measuring one or the other – they clash.” “Because he was so premature,” says Laura, “there was chance of a delayed maturation, so they opted to do nothing at first and we went back for re-testing when Andrew was eighteen months. They did a standard behavioural test but there was no way Andrew was able to comply with what they wanted, so they had to judge it by whether his eyes flickered or his head moved in response to noises. “Andrew’s developmental delay became increasingly noticeable. He had great lack of focus – getting him to engage on a task was difficult. So he was referred to Deaf Child and Adolescent Mental Health Services who diagnosed classic childhood autism. This confirmed what we expected and opened doors to more support and

grants. We’ve learnt a lot about autism, including that it’s a wide spectrum and no two children are alike. “Communication is a challenge. Andrew’s completely non-verbal, although I think he’d like to speak. He uses objects of reference, like a bib if he wants food, and will take our hand to lead us to something. We had no joy with sign language because of attention issues from the autism but we might try Picture Exchange Communication System (PECS) in the future.” Laura doesn’t think that anyone understands how deafness and autism work together. She explains, “Nobody can say how one is affecting the other. Can he hear but not show it because of the autism? Or can he actually not hear but can’t tell us because of the autism?” Rik adds, “I think it’s about being aware which condition is most dominant.” Laura and Rik believe Andrew’s autism is his predominant need, and so fought to get him a place at an autism school. “We started the process of 0808 800 8880 •

ADDITIONAL NEEDS getting him a statement of special educational needs when he was two,” remembers Laura. “It was already obvious then that with his developmental delay mainstream education wouldn’t be suitable. The first time around we were declined for a statutory assessment but we wrote to the council and they reconsidered.” Andrew was given a statement that said specialist provision would be best for him. “The council didn’t name a school and in discussions they thought he would be most suited at a school for children with multiple disabilities,” says Laura. But the couple thought that the school, which was very bright and colourful, would not suit Andrew’s focusing issues. “There was so much on the walls – he’d be far too interested in that,” says Laura. They had to appeal for a place at the autism school but the council conceded just before tribunal. “It’s always a battle,” sighs Rik. “Even now, Andrew’s headmaster says he might be better suited elsewhere. But ask him where and he doesn’t know.” “He’s worried the school isn’t meeting all of Andrew’s needs,” adds Laura. “But whether he goes to deaf school, multiple disability school, or autism school, it’s going to be a compromise. In the autism school he gets support from a Teacher of the Deaf, a speech and language therapist, there’s a high teacher-pupil ratio and staff are accustomed to non-verbal children. And as much as anything it’s a nice school and Andrew enjoys going there.” Laura and Rik feel they’ve been offered all the support out there, but it hasn’t always been useful due to Andrew’s combination of needs. “You’re not going to find a specialist in both,” says Laura. “You’re going to spend your life telling one side what the other side said.” Connecting with other parents is something that Laura finds valuable. “Take advantage of social media,” she recommends. “I’ve been on the NDCS Parent Place, Netmums, Facebook groups, and there’s Contact a Family where you can search for children with similar disabilities. Whatever you’re going through there could be others experiencing the same. “We never give up hope. If we can crack Andrew’s communication issues then hopefully his development will take off. We just hope that in the future he can become an independent adult. We’d like him to try and live as normal a life as possible.”

“It’s about being aware which condition is most dominant”

To read more of Andrew’s story, follow Laura’s blog at (Please note we promote blogs we think might be of interest to our members but the opinions expressed in them are not necessarily our own.) We have more information on deafness and autism at If your child has ANSD and you’d like to find out more about the condition, visit For information and support on autism visit

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

Regular e-newsletter

Email to sign up to our e-newsletter especially for families with deaf children with additional complex needs.

Contact other families

Get in touch with other families of deaf children with additional needs and share experiences and tips. Visit our online discussion forum: parentplace.

YouTube videos

Check out our YouTube playlist of helpful videos for deaf children with additional needs at

Me2 deaf-friendly activities

We support activity providers with information and training on how to include deaf children and young people. If you would like to refer an activity provider or local short break service to Me2 visit me2.


Deaf Children with Additional Needs includes sections on understanding additional needs, parenting tips, choices for your child and resources. additionalneeds


If you’ve registered on the NDCS website 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

If you’d need some help finding the right school for your child, • 0808 800 • 0808 8880 800 8880 visit

2014 NDCS Families • Autumn 2015


How do I...

…make sure my family has access to health information?


Whether you have a newly diagnosed deaf child or a teenager who’s becoming independent, making sure you or your child has access to reliable health information can be a challenge. Here, five families share their experiences. Laura and Peter are parents to Joseph (2), who has moderate unilateral deafness and Alfie (8 months) who is moderateseverely deaf. As more investigations continue with my youngest, I’m finding it difficult to keep up with everything we’ve been told. I’ve also grown frustrated with doctors’ refusal to say what they think the diagnosis is, instead repeating that we shouldn’t worry yet. I’ve only been able to find out information about the impact of hearing loss from NDCS. “I’m worried about when my children get older, whether a professional would mistake their communication difficulties for an inability to understand, leaving them without access to information. “My advice would be to write down any questions you have. Don’t be afraid to request leaflets or ask the doctor/nurse to write things down. If your child is old Joseph enough, ask if they and Alfie have any questions of their own.


NDCS Families • Autumn 2015

Elanor is mum to Lily (17) and June (6), who has moderate to severe hearing loss. I’d never experienced deafness before and had no idea what services were available. There was no one professional co-ordinating health or social care for June, who has an undiagnosed genetic condition and complex difficulties. I had to search for information myself, or get it from other parents. For this reason it took a long time before I fully understood what was available to my daughter, and by then some years had passed. “I’d advise other parents to ask about local services and get as much support as early as possible. If your child has complex issues ask if a professional can take the lead in co-ordinating care and looking into what’s available. Meet other parents if you can and find out about their experiences. Also try to meet deaf adults as they’ve been June through all of this before.

Lisa is mum to Kamarli (6) who has a mild to moderate hearing loss. When Kamarli was first diagnosed I wasn’t given much information and had to do my own research. I discovered NDCS and attending a pre-school weekend for families was very helpful.

“Kamarli started wearing hearing aids when he was two and the health services where we live have been good. We were always given full explanations and they were always available if I had any questions. “I would advise other families to do their own online research about any terms they don’t understand. Charities and the NHS have lots of useful information Karmarli and you can discuss what you’ve learned with the audiologist. 0808 800 8880 •

HOW DO I...? Helen and Tony are parents to Lucy (16), who has a moderate hearing loss, and Katie (13). Lucy has been involved in all her appointments from an early age, and as a result is now confident to book and attend appointments and ask for information. “Lucy has been well supported throughout school by the Hearing Support Service (HSS). For example, she’s finding her new hearing aids uncomfortable so HSS have been in contact with audiology who are investigating possible reasons for this and looking for solutions. “I’d advise other parents to involve their child from an early age. Ask their opinion during appointments, engage them in conversations with the professionals and they’ll become more confident at finding out things for themselves. Lucy

Nicky and Ian are parents to Emily (9), who is profoundly deaf, and Murray (5). When we attend doctors’ appointments I let Emily give her name at reception and try to engage her from the start of the appointment. If it’s a doctor we haven’t seen before, I tell them that Emily’s deaf and that she needs to see their face. If it’s something I feel Emily can tell the doctor about then I let her talk and then they usually answer Emily directly, making her feel involved. “We attend six-monthly appointments with the Scottish Cochlear Implant Centre and they always ask Emily how she’s doing and if there’s anything she isn’t happy with before asking us. “I worry about Emily, as when she was younger she missed out on play dates and birthday invites and struggled socially. She’s recently become more aware of her implants and feels different. I hope as Emily gets older, there is emotional support available to her should she need Emily it.

To find out how to improve deaf children and young people’s experiences of healthcare services visit For information about audiology services visit audiologyservice. • 0808 800 8880

Gemma and James are parents to Daniel James (3), who is profoundly deaf, Katie (1) and Jay (five months), who is moderate to severely deaf. The main barrier I have found is access to speech and language therapy for Daniel James. I had to find out about it myself and do a selfreferral.

“When Daniel James was initially diagnosed we were given lots of information about cochlear implants but told little about the length of time the assessment process takes or what was involved. The hospital doesn’t get involved until the child is about 10 months old which is a long time not knowing what’s happening. “Speaking to other parents has given me valuable information. Also speak to NDCS or your local deaf children’s society to find out about support and Daniel services. James, Katie and Jay

Join our family panel Next time in Families magazine:

“How do I… make Christmas deaf friendly?” If you have any tips, advice or suggestions to share, get in touch at

NDCS Families • Autumn 2015


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Ask the


Each issue a different professional shares their expert advice and gives information to help you support your child. This time Nicki Harris, responsible for support for students with a sensory or physical disability in colleges and universities in and around Surrey, shares her insights. How do you and your team support deaf young people?

I lead the Post-16 team – we provide support for students with hearing loss and other sensory or physical disabilities in further and higher education. Our team includes advisory Teachers of the Deaf, teachers for vision impairment, interpreters, specialist student support workers and qualified electronic and manual note-takers. The advisory teachers work closely with academic staff in colleges and universities to ensure that teaching and learning is accessible to deaf students e.g. transcripts are available for clips if there aren’t subtitles, or additional time is negotiated for exams. Student support workers can also support on trips and off-site excursions. I’m responsible for timetabling weekly to make sure the skill mix of support workers is right for the students’ needs. I’m also responsible for budgeting and safeguarding.

How does a deaf young person get support from you?

For colleges, one of the advisory teachers will attend the Year 10 and 11 annual reviews/Education, Health and Care plan meetings at schools and this will inform my ‘potential students’ list • 0808 800 8880

and enable us to prepare the colleges by offering supported interviews and taster days. For university, the disability officers notify us of potential students and our support system then kicks in if the student has their Disabled Students’ Allowance in place. Even if support is not requested for a student when they start, colleges and universities will contact us if they need our support later on.

How do you decide what type of support a young person gets?

We listen to the student! They have chosen their course so we listen to their views and use our experience to advise them. The support is flexible – if the student wants to reduce or increase it we’ll be responsive – it’s all student led. As colleges and universities are bigger than schools, at first support may increase from what a student previously had, but once they’ve found their feet we adjust it accordingly. Class sizes are different so, for example, they might not have had a radio aid at school but they might now want to try one.

Asking a student to not only move establishment but also be responsible for booking their own support is a big ask so we’re happy to support with this – we book appropriate staff and brief them – the student just has to keep the lines of communication open and turn up.

Any other tips for deaf young people who are thinking of going to college or university? Be realistic about what is within scope. Not all establishments will have immediate access to qualified communication professionals so have coping strategies. Be prepared in terms of questions to ask at open days and when you go to your needs assessment be clear what you want and need. Always ask about the support – are the staff qualified, what skills do they have and always check that a qualified Teacher of the Deaf is part of the package. This is your one chance so don’t settle for second best!

T o see videos of other professionals who may support your child, go to

NDCS Families • Autumn 2015


Special educational needs (SEN) support: assess, plan, do, review

What support should children and young people with SEN in England be getting if they don’t have an Education, Health and Care (EHC) plan or a statement of SEN? School-based support used to be known as ‘School Action’ and ‘School Action Plus’. These terms have now been replaced with one single term, ‘SEN support’. SEN support is the term used for support which a school, or other education provider, gives to children and young people who have special educational needs but who don’t need an EHC plan. EHC plans are gradually replacing statements of SEN. Once a child is identified as having SEN, schools should take action to remove barriers to learning and put effective provision in place. This should take the form of the fourpart cycle ‘assess, plan, do, and review’. There’s nothing new in this except the name: it’s just good teaching! In other words, teachers use the information they’ve gathered about a child’s needs (assess), to plan the provision needed to support them (plan), they put this in place (do) and then review how effective it was (review). With the information provided by the review, they start the cycle again. According to a recent survey, only 15% of deaf children and young people in England have statements or EHC plans. For most, there may be no need to go beyond the SEN support stage, because their needs can be met from the school’s own resources, but this cycle of assessing and reviewing progress should identify those children who need a formal assessment of their education, health and care needs, possibly leading to an EHC plan. Let’s look at the cycle in more detail and consider how it might apply particularly to deaf children and young people...

Assess In order to plan effective provision to support a child or young person, it’s important to get a good understanding of their needs and their learning environment. Deafness can have an impact on many aspects of learning, including 34

NDCS Families • Autumn 2015

listening skills, attention and concentration, language development, literacy skills, auditory memory (the ability to process, analyse and recall orally presented information), information processing time, social skills, independence and self-esteem. So what does good assessment involve? Each child is different, but for all children good assessment should identify: • strengths and difficulties • barriers to progress and support strategies to remove them • targets for achievement. This will involve: • finding out what the child wants to achieve and their views on their strengths, difficulties and how they should be supported • parents’ views on the above • gathering information on the child’s current level of attainment and progress over time using both formal specialist assessments and class work and testing • advice from specialists such as Teachers of the Deaf, audiologists and speech and language therapists.

Plan The purpose of providing support is to enable a child to achieve the outcomes which they, parents and professionals have identified. A good plan should include: • the SMART outcomes the child is expected to achieve • the shorter term SMART targets which lead towards the outcomes • the provision including technology, communication support, listening conditions and any support needed in specific subjects • details of the people responsible for overall co-ordination of the plan and for delivering the provision • arrangements for monitoring and reviewing the child’s progress and the effectiveness of the provision. 0808 800 8880 •

THE SCHOOL YEAR Terminology • SMART means specific, measurable, achievable, realistic and time-bound. • An outcome is what the child/young person aims to achieve in the medium term, e.g. by the end of a key stage at school. • Targets are small steps towards achieving that outcome. • Provision is the facilities, strategies and resources required to meet a child’s needs. For a deaf child the plan is likely to include: • targets related to the areas listed above under ‘assess’ • provision required to enable the child to achieve those targets, including (as appropriate): – provision and maintenance of hearing equipment – communication support – measures to ensure a good listening environment and good acoustics – access arrangements for tests/exams (e.g. extra time) – support from specialist staff – strategies to support the development of language, communication, literacy, self-esteem, social skills and independence (e.g. managing their own equipment).

Do Now the plan is put into action. The teacher is responsible for working with your child on a daily basis and should work closely with any teaching assistants or specialist staff. The special educational needs co-ordinator (SENCO) is responsible for overall co-ordination of support and together with the Teacher of the Deaf, will advise teachers and other staff on working with deaf children, ensuring that everyone involved receives the necessary information, advice and training.

NE mn c W heck



Supporting your child’s education this autumn

• If your child has their third birthday this academic year, see uk/earlyeducation for tips on early years education. • Plan ahead if your child is due to start or change school in September 2016. Check the arrangements for applying for schools in your area. For advice on choosing a school, see uk/choosingaschool. • We have useful information for education professionals in our booklets Supporting the Achievement of Deaf Children. Some parents have found it useful to give them to their child’s school. supportingachievement education

Review This should involve looking at the child’s progress and evaluating the support. It should consider the views of the child and their parents and involve them in planning the next steps. Targets and provision should be amended accordingly and a date set for the next review.

Know your rights If you’re not happy with how a school or education provider is meeting your child’s needs, speak to your child’s SENCO or Teacher of the Deaf. You can find more information on your child’s education rights and action you can take at uk/educationcomplaint.

For more information on SEN support see chapter six of the SEND Code of Practice: 0 to 25 years, which you can download from send-code-of-practice-0-to-25. We have more information for parents about the SEN framework, including a factsheet on EHC needs assessments and plans, at • 0808 800 8880

NDCS Families • Autumn 2015



Apps to make early learning

Even young children like to play with apps, but which ones could help your deaf child develop key skills? The early years, between birth and the age of four, are vital for your child’s development of important skills including language, communication, literacy and play. There are many different types of app which could benefit them in these areas, from those focusing on communication (such as British Sign Language) or reading and writing skills, to those promoting interaction, communication and problem-solving through play. Here we suggest some of the latest apps which you might find interesting and helpful. Marsha Locke, who supports families with young deaf children at the Virtual School Sensory Support Service at Norfolk County Council, offers her advice on some of the apps featured below.

F or developing language and communication skills Sock Puppets (iOS: £1.99) What is it? An interactive cartoon app which lets you choose characters, backgrounds and props, and then create a sock puppet show. Great for: encouraging young children to use their voice and explore their imagination. Marsha says: “Children enjoy this app because they can control the puppets and give them funny voices. It’s great for them to create a story from their ideas, record it and play it back as many times as they want.”

Nursery Rhymes in Sign with Scarlett (iOS £1.49/ Android: 2 x 75p) What is it? A British Sign Language app featuring signed nursery rhymes that you and your child can sign along to. Great for: learning and practising early signs with your child. Marsha says: “I’ve recommended this app to families that want to learn nursery rhymes in sign. There aren’t many child-focused signing apps around at the moment, but this is a good one to share with all the family so everyone can join in.”

Freddie 36

NDCS Families • Autumn 2015

For developing literacy skills Hairy Letters (iOS: £2.29) What is it? A fun, interactive phonics app which supports the learning of letter sounds and shapes with bright, colourful characters and animations. Great for: supporting early phonics learning in a quiet environment and at your child’s own pace. Marsha says: “This is a great way to introduce, or practise, learning the alphabet and phonics. There are a variety of ways to play: listen to the sound of the letters, practise writing them or watch the sound animation. This captures children’s interest and gives them access to different learning styles.” Parent review: “This app is great. It’s got fun characters and little animations that act out the letter sounds. My son found the animations very funny and loved repeatedly going into each letter and copying them. I would definitely say it’s a very useful tool to help language development and making learning fun. I would recommend it to anyone teaching their little one the alphabet.” Sarah, mum to Freddie (4) who is profoundly deaf. 0808 800 8880 •


 Beebies Storytime C (iOS/Android: free) What is it? Lots of free early years interactive storybooks to read with your child, and tips on how to develop their reading skills. This fun app has an ‘accessibility’ setting so it can be enjoyed by children with a range of abilities. Great for: encouraging the development of early reading for young children. For developing play skills Toca Town (iOS: £2.49/ Android: £1.99/ Windows: £2.29) What is it? A bright and colourful interactive game which lets your child explore Toca Town, with lots of different environments and characters. You and your child can make up stories to include communication, routines, games or whatever you like! Great for: encouraging early communication and interaction skills like asking questions, turntaking, thinking about characters and developing stories. • 0808 800 8880

Tiny Hands Sorting 1 (iOS: free) What is it? A series of simple, educational apps for toddlers to sort shapes, colours and objects. Great for: encouraging early skills in hand-eye coordination, concentration, visual perception and vocabulary. Parent review: “I think it’s great and the levels of each app are clearly defined and age-appropriate. The games have just enough activity to be interesting and hold my child’s attention without them getting bored or wanting to move on too quickly. Part of the excitement is completing the level and then having to ‘pop the bubbles’, which again helps keep their attention just that little longer. “I like that you can get a trial and then add on the full site. The children find them really easy to navigate and like that although there is an order, they can select which games they’d like to play. They generally don’t need to be supervised while playing these games and seem to understand what is required without my input. I would definitely recommend these apps.” Lisa, mum to Chloe (4) and Jack (3) who are both profoundly deaf.

If there’s a free version of an app then we suggest you try this first to make sure that it’s useful and suitable for your child. Be aware that some free apps have advertising banners which may appear when your child is using the app. To find out more about the latest apps that could help your deaf child, including 30 specifically aimed at early years skills development, go to www.ndcs. Adam NDCS Families • Autumn 2015


Meet our local group! Tower Hamlets Deaf Children’s Society (DCS) in London involves over 100 families, including children with a variety of different needs and levels of deafness, but they all benefit from spending time together. I heard about Tower Hamlets Deaf Children’s “The most Society from our Teacher useful part is of the Deaf and then we being surrounded by joined when Hamza was parents who’ve gone two. It’s made me more through the same aware of the difficulties thing.” deaf children face, but I’m also more aware of the support available that he can access. “For me, the most useful part is being surrounded by parents who’ve gone through the same thing. Sometimes when you feel you’ve come to a full stop this can really help. It makes you proud to be a parent of a deaf child.

Husna, mum to Hamza (4) who is profoundly deaf and wears cochlear implants.

We first met members of the Tower Hamlets local “…great for group through a Ready the children to Steady Go play session for establish their deaf children and have now identities and have been part of the group for a something to year. aspire to.” “We throw Christmas and summer parties and hold coffee mornings to meet other parents and hear from guest speakers. We were visited by a hearing aid wearer who was diagnosed as deaf at two-years-old and is now a professional adult working for a local college and studying for a degree. It was good to meet an adult who has achieved and overcome similar issues as Aayan and great for the children to get involved, establish their identities and have something to aspire to. “Going to the group means Aayan gets to meet his friends and I get to meet parents in similar situations and exchange experiences, which is especially useful as Aayan is my first child. Hearing how other parents have dealt with situations and having somewhere to go means I feel I’m not the only one and it stops me feeling isolated.

 Nosira, mum to Aayan (5) who is severely-profoundly deaf, has auditory neuropathy spectrum disorder (ANSD) and wears hearing aids. 38

NDCS Families • Autumn 2015

0808 800 8880 •


We attended the Ready Steady Go play “Being with session for deaf children other children where we met other has helped Isobella parents and found out with her speech and about Tower Hamlets DCS. language and her We’ve been to a summer signing.” picnic, an Easter party, the theatre and to museums with them. “We held a ‘Wear a Rainbow’ fundraising campaign, where everyone was encouraged to wear a colour of the rainbow to raise money for the group. My work also sponsored us as their charity of the year. “The group has made a huge difference. Being with other children has helped Isobella with her speech and language and her signing. For myself, meeting others with similar experiences who can empathise makes me feel like I’m not on my own. We’re all fighting for the same thing and have the same objective.

 Candice, mum to Isobella (2) who is profoundly deaf and wears cochlear implants. We were referred to the Tower Hamlets group “The group by a community worker has meant she and got involved soon can be around deaf, after Tasneem’s diagnosis. signing friends and We’ve been to coffee she enjoys all mornings and fun days. activities more.” “Tasneem has severe communication difficulties and signing is her first language. The group has meant she can be around deaf, signing friends and she enjoys all activities more. She experiences frustration in communicating at school which can be upsetting, so the group provides her with opportunities to develop her social and communication skills. Deaf awareness is so important. “We’re a close group, we give each other insight and information, otherwise we’d be stuck. We have a WhatsApp group so we can support each other, and help each other out with equipment or parts for hearing aids etc. Just • 0808 800 8880

getting together in the community is really helpful, and we’re all currently learning BSL Level 1. We’re lucky to have this facility so we can branch out to reach others – I don’t want anyone to feel alone.

 Mahbub, dad to Tasneem (5) who is profoundly deaf and wears a cochlear implant on her right ear. Our audiology clinic first put us in touch with “…talking to other Tower Hamlets DCS and we’ve mums and dads at been members for four or the local group makes five years. We hold regular me feel confident.” play groups and summer trips. Shahriyar has met lots of people and had a chance to communicate and play with others. He’s also had an opportunity to sign. “I was so upset by his initial diagnosis but talking to other mums and dads at the local group makes me feel confident.

 Ripa, mum to Shahriyar (5) who is profoundly deaf and wears cochlear implants.

I nspired to join your local group? You can find your nearest one at, or contact our Local Groups team on for information about starting your own.

NDCS Families • Autumn 2015



Books and products for deaf children – tell us what you think! The Creatures of Chichester: The one about the curious cloud by Christopher Joyce Chichester Publishing, 2014 £4.99

Would you or your child l ike to write review for Fam a ilies maga magaz zine? Email ine@n dcs.or

Key This resource could be most suitable for the following ages:




“A strange purple cloud-like dome has settled over Chichester and all the ‘Twolegs’ (humans) have turned deaf. “The story is told through the eyes of the animals that live in the city – falcons, spiders, mice and in particular a pet rabbit owned by a red-haired deaf girl called Izzy. “The humans resort to communicating through texting on their mobile phones and tablets. Izzy is in her element, staying level-headed when everyone around her is going crazy, and teaching her friends how to communicate through sign language. “This is a charming story, which has led to a number of interesting discussions with Jemima. Halfway through the book Jemima commented that she thought that Izzy should

be able to hear when everyone else becomes deaf. I told her to read on… and she was gripped. “While this book does touch on some of the communication issues around being deaf, it could have explored them further. What it does demonstrate well is that Izzy is a bright, loving little girl who happens not to be able to hear – just like Jemima! We look forward to the next book in the series.” Kate, with help from Jemima (9) who has a moderate hearing loss. Jemima

What the Jackdaw Saw by Julia Donaldson, illustrated by Nick Sharratt Macmillan Children’s Books, 2015 £6.99 0–4 “I was excited to hear that Julia Donaldson had written a book in collaboration with deaf children as we had enjoyed Freddie and the Fairy. The story is about a bird flying over different parts of the country asking animals to come to his party, but they don’t answer him and instead keep tapping their heads. He has no idea what this means until a wise old owl helps him realise they are signing, so he signs back and all the animals come to his party. 40

NDCS Families • Autumn 2015

“Katie loved that some of the kids in the illustrations had cochlear implants Katie and Abbie as she is a bilateral cochlear implant wearer and it’s important that she sees herself represented in children’s literature. The story is easy to follow for both deaf and hearing children, helping them to understand that both speech and sign language have their place in society. We especially loved the party at the end with all the children and the animals signing and having fun.” Abbie, with help from Katie (3) who is profoundly deaf. 0808 800 8880 •


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Get ready for Christmas with NDCS! Get your NDCS Christmas cards while you can With limited stock available, order yours now to make sure you don’t miss out. Great gift ideas Want an alternative gift idea? Starting from £8.50 you can support a deaf child and you’ll receive a gift card to send to your friend or loved one. To order your Christmas cards and gifts go to or call Impress Publishing on 01227 811 658 for a booking form. Alternatively visit one of the more than 100 Cards for Good Causes outlets across the country. To find your local outlet, visit

for 10 card s

NDCS07 £3.90

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From just

37p per card


Freephone 0808 800 8880 See for details of our opening hours and free interpreter service.

What do you think of our information?

How technology can help

technologies which A guide to products and and young people could benefit deaf children

Q. How is Personal Independence Payment (PIP) different to Disability Living Allowance (DLA)? A. PIP is a benefit which replaces DLA for people aged 16

or over, which most deaf young people should qualify for. At present PIP only applies to England, Scotland and Wales but is likely to be introduced in Northern Ireland during 2015–2016. Your child may be able to get PIP if they have a disability, are aged 16 and over and have difficulties with daily living or with getting around. If your child doesn’t receive DLA they can claim PIP now. If they receive DLA now, they should wait until the Department for Work and Pensions (DWP) writes to them to tell them to claim PIP. Your child is encouraged to make the claim for PIP themselves if they can by telephoning the DWP. If your child would struggle to claim themselves then the DWP must allow you to make the claim for them. If they meet the basic conditions they will be sent a PIP2 form. This form helps the DWP decide whether your child is entitled to PIP by looking at a range of activities. For each activity there is a list of difficulties they might have, called descriptors. Each descriptor has a number of points, and your child scores points according to the highest descriptor that applies to them in each activity. They need to score at least 8 points to get the standard rates of PIP and at least 12 points to get the enhanced (higher) rates. After returning the form they may be asked to go for a face-to-face assessment. After the assessment the assessor sends their findings to the DWP, who will make a decision on your child’s claim. For more information visit


NDCS Families • Autumn 2015

10/06/2014 15:35

how technology can help

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How Technology Can Help “The resource covers a lot of beneficial information on products and technologies which could make life easier for deaf children and give them independence and confidence. It also helps families adopt strategies to effectively communicate with their deaf children. “It explains the recent advances in online technology which are beneficial to deaf children, for example Skype. It even touches on apps to help your deaf child with their communication skills. “It also importantly explains the basic rights that a deaf child has around reasonable adjustments in school under the Equality Act and Special Educational Needs Code of Practice. “The booklet is presented and structured really well. It has great visual impact with colours, pictures, personal quotes and ‘did you know’ facts. I would definitely recommend this resource to other parents of deaf children.” Sameena, mum to Laaibah (5) and Aaira (1). Laaibah is profoundly deaf and has bilateral cochlear implants. Faisal and Sameena with Laaibah and Aaira 0808 800 8880 •


What’s new from NDCS?

Supporting your Deaf Baby or Toddler’s Listening and Speech Development

What type of information is it? A factsheet available in print or to download from the NDCS website. Who’s it for? Parents/carers of deaf babies and toddlers. What’s it about? Supporting your deaf baby or toddler to communicate through listening and speaking. It explains the importance of early and consistent hearing aid or cochlear implant use. You might also like: our Communicating with your Deaf Child guide.

get ic is where you The hearing clin The person who d. your ears checke is an audiologist. checks your ears ut ears, so you are abo They know all in safe hands!

Local Offer factsheet for young people

What type of information is it? A factsheet available in print or to download from the NDCS website. Who’s it for? Deaf young people living in England. What’s it about? What Local Offers are, why we need them, how to find out how good your Local Offer is and how to give feedback to your local authority. You might also like: our short video on Local Offers available at

Education, Health and Care (EHC) plans factsheet for young people What type of information is it? A factsheet available in print or to download from the NDCS website. Who’s it for? Deaf young people living in England. What’s it about? What EHC plans are, whether you need one, how to get one, and how to appeal. You might also like: our short video on EHC plans available at uk/ehcp.


My audiologist is call

Going to the Hearing Clinic What type of information is it? A comic available in print or to download from the NDCS website. Who’s it for? Deaf children under the age of eight who will be visiting a hearing clinic. What’s it about? What children can expect when they go to a hearing clinic. You might also like: our Ali Gets Hearing Aids comic.

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, families to share their stories or simply tell us what else you need. Go to to get involved. • 0808 800 8880

We need you!

If you’ve registered on the NDCS website www.ndcs. 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

NDCS Families • Autumn 2015


? n o s ’ t a h W

events coming E E FR c ti as nt fa f o ts lo We have st a few of them. ju f o er st ta a s e’ er h d up, an Get Creative Weekends for 11–15 year olds During our weekend events your child can get stuck into creative arts activities. They will have opportunities to build confidence and learn new skills, meet other deaf young people and make friends, be independent and develop their communication skills. They will also have access to relevant NDCS information and advice. No previous arts experience necessary! Get Creative Weekend 13–15 November, York Deaf young people will take part in creative workshops focusing on drama and digital arts. They will develop new and existing skills by learning how to use digital equipment, basic props and costume and will create a short performance incorporating drama and digital projection to showcase at the end of the weekend. Get Creative Weekend 20–22 November, North Wales Deaf young people can take part in a new puppetry workshop facilitated by a deaf actor. They will work with cloth, paper, found objects and a variety of puppets, in a programme that will be physical and lots of fun. There will be opportunities to work in groups, pairs and individually so deaf young people will develop confidence and teamwork as well as learning how to use puppets to create a short scene or story by the end of the weekend.

First Time Away Weekends for 8–11 year olds First Time Away Weekends involve a one night stay at an activity centre – they’re perfect for children who want to try out being independent for the first time. We offer a fun and friendly environment with lots of activities for children to try. Activities may include bush craft, climbing, high ropes, aeroball, archery, circus skills and a scrap heap challenge. 10–11 October, Doncaster 17–18 October, Norfolk


NDCS Families • Autumn 2015

Day events for 8–16 year olds Our day events are a great opportunity for deaf children to meet each other. We offer lots of different events, from sports and outdoor activities to creative workshops. Get Active Day, 10 October, London Get Creative Day, 21 November, London

Weekends for Families with Deaf Children aged 0–2 years Aimed at families who haven’t attended an NDCS weekend before, these events provide an opportunity to gain a better understanding of topics around deafness, communication and learning through play and reading. They will be led by experienced NDCS staff, and specialists will join us to share their knowledge and understanding. 19–20 September, London 10–11 October, Blackpool 17–18 October, High Wycombe 24–25 October, Cambridge 7–8 November, Middlesbrough 21–22 November, Ayr

Learning about your child’s deafness A one day event ideal for families with a deaf child aged two or older who has been diagnosed in the last 18 months. This information day is aimed at families who haven’t attended an NDCS event before. It provides a safe and relaxed environment to meet other families, share stories and increase understanding of topics around deafness, communication and audiology. 26 September, Cardiff 26 September, Manchester 24 October, Birmingham 28 November, London

To book a place on any of our events, or for more details, visit

0808 800 8880 •


e m a g l u f i t u a The be As the new football season kicks off, we catch up with the under-13s team at Charlton Athletic Deaf Football Club (DFC) to find out about their recent adventures on the pitch. Charlton Athletic DFC is one of many deaf and deaf-friendly football teams across the UK. Their most recent success was in the National Deaf Youth Football Tournament, organised by NDCS. The thrilling finals – featuring under-13s, under-16s and under-18s teams – took place at St George’s Park in Staffordshire, the home of the English football team.

12-year-old Drew, who is severely deaf, says: “I really like football and started playing four years ago, at left-back or in left-midfield. I mainly play for a hearing team but I also play for Charlton Athletic DFC. I enjoy having lots of deaf friends around me when I play, although it can be harder to get players’ attention. “Before the tournament finals we had a tour of St George’s Park, so I now know what it’s like to train as a professional footballer! We played Peterborough DFC in the final – we tried our hardest and although we lost 3–2 it was still a lot of fun. “I would tell other deaf young people to try and find a local team. I’ll be playing for Bromley Football Club this season – I can’t wait!” • 0808 800 8880

Drew’s dad Duncan, says:

“When Drew started playing football it really helped improve his fitness. He learnt about being a team player and how to show commitment by going to training and matches. It’s also given him experience of mixing with hearing and deaf peers. “I went along to the tournament final and it was great seeing deaf players at Drew’s level. Football scouts were there enquiring about deaf players, which was great as it doesn’t happen very often.”

Team coach Steven Wynne says: “I’m deaf and first got involved in football when I was eight, joining a deaf team. I got hooked on football and I’ve been involved ever since! “I’ve been coaching the youth team for two years. The players have different levels of hearing loss and ways of communicating. I use visual and body language when coaching, for example, pointing where to pass the ball. “I’ve twice taken the u-13s team to the finals of the NDCS football tournament – most recently at St George’s Park. It was the perfect

venue and the boys were amazed to see where the England football team trains. The tour was brilliant and the boys were asking lot of questions. “This year’s final against Peterborough was the best I’ve seen. The match was very tense and the players worked their socks off. I was so proud despite the team losing 3–2. All of the players did brilliantly and I’m sure they will never forget their fabulous day at St George’s Park.” To find deaf-friendly sports clubs in your area, go to The National Deaf Youth Football Tournament will be back again in March 2016. It’s open to all deaf football teams, deaf youth groups and any mixed deaf and hearing teams who want to play. Look for updates at whatson.

NDCS Families • Autumn 2015


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 and study, including how their employers, institutions and colleagues adapt to their needs. I’m a marine biologist because… “I’m passionate about the natural environment, and I love reading and learning. I’ve always been curious, and science gives me an avenue for this. I have research and teaching responsibilities at the university where I work – from teaching large classes of around 400 students, to fieldwork and laboratory work. “I was diagnosed with severe sensori-neural deafness as a child. I wore hearing aids and went to a mainstream school with a support unit, where I relied on lipreading and support workers. I studied marine biology at university – class sizes were small, but it was challenging as I had no extra support. I then completed a PhD. What does your child “I’ve travelled extensively and written want to be when they many scientific publications. I’ve won grow up? awards for my teaching and outreach For more information on work, am studying for my Level 1 in BSL, careers, check out our section and volunteer with NDCS. about life after “My deafness is part of me and leaving school at without it, I certainly wouldn’t be the person I am, or have achieved such a leavingschool. rewarding career.” Andy Davies

I’m a research assistant in deaf children’s education and language because… “I find it hugely rewarding to see children’s reading skills and confidence improving. Recently I’ve been collecting data as part of a project to improve deaf children’s reading skills. I also code and analyse data and go to meetings to discuss the latest research. “At my workplace, luckily, everyone is very deaf aware. I also have my own minicom for phone calls. “I found it difficult to settle at uni and get the support I needed, but made a fresh start a year later. I felt more able to tell people I was deaf and teach them basic deaf 46

NDCS Families • Autumn 2015


I’m an IT Technical Consultant because… “I like challenging projects involving new technologies. I manage a technical team which looks after several projects. We gather requirements, prioritise and delegate them. “I’m profoundly deaf and wear a cochlear implant – I communicate by lipreading. I worked for many years as an application developer before I found out about speech-to-text reporting, which is funded by the Access to Work government scheme. I was then able to fully participate in conference calls and large meetings. My confidence grew, and I took on more, eventually managing a global team. “As I enjoy challenges, I project managed a self-build house and now live in it! I also swam as part of a three-man relay team across the English Channel in 2012. “As I’m passionate about helping disabled people in the workplace, I joined Purple Space, an informal network focusing on the leadership skills required to generate positive change.” Matthew Johnston

awareness – and having a note-taker in large lecture halls and seminars was also a great support. “I’m most proud of achieving a First Class Honours in my Criminology degree and then a Merit for my Masters in Psychology. I felt I had shown that deaf people can achieve just as much as, if not more than, hearing people sometimes!” Amelia Ralph Lewis

0808 800 8880 •

For residential and day pupils aged 3 - 19 years

"Teaching is nearly always good, with some examples of outstanding practice. Pupils say they enjoy coming to school because the vast majority of staff make learning interesting and fun"

"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

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… Mary Hare School ! Come and see for yourself

Year 7 Entry Information Day – Thursday 24th September 2015 6th Form Information Day – Thursday 15th October 2015 For more information or to arrange an individual visit, please contact Natalie Ross: ( or 01635 244215) or visit our website

Securing the future of deaf children and young people

Families magazine, issue 38 (autumn 2015) general  

Filled with the usual advice, information and family stories, this issue also includes: • the impact of seven-year-old Honor’s mild dea...

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