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Summer Winter2015 2014••Issue Issue37 35

towards a world without barriers...

Oliver’s pedal power

towards a world without barriers...

How he mastered cycling safely Families s

a magazine h l! gone digita

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towards a world w

towards a world




It is free to attend but it will help us if you let us know that you are coming so please email emma.daniel@ or telephone Emma on 01273 682362.

Come and help us celebrate our 70th birthday at our best ever Summer Fete. It is free to attend. We will have a variety of sports, arts and crafts, and traditional activities for the whole family to enjoy. From 10am to 5pm. Spend the day with us. We will have lots of fun activities including: • Bouncy castle • Go karts • Football and cricket • Hula hoops • Making badges, bracelets and lots of other crafts • Circus Skills workshops* • Dance workshops* We are right by the seaside in Brighton... just a stone’s throw from the beach. *must be booked in advance please email

HAMILTON LODGE School & College

Education and Care for Deaf Students from Primary to FE 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.

15 Hayley has


Supporting others who care for your child

become an exam monster


36 Technology for the summer

The summer is finally here and the long school holidays are approaching. We have lots of ideas on how to keep your child entertained over the summer. There are many activities and events they could get involved in, whether that’s through your local group (check out some examples on p38–9) or through our events for young people (see for up-to-date listings). We can also support your local sports, arts and leisure clubs to be more deaf friendly, like we did with Reuben’s roller hockey club on p45. Let’s hear it for the dads! It can be difficult being the father of a deaf child if you can’t always be available for all of the many appointments. Dad Christian tells us how he juggles this on p19. We also have some great tips from dad Mike on how to get your children cycling safely on p22–3. Families magazine has gone digital! If we have a current email address for you then you should have received a link to the digital version of this magazine. Please get in touch on if you didn’t receive it, or to let us know what you think of the digital version. Enjoy the summer,

Karen Harlow, Editor email:

Contents Summer 2015 • Issue 37


4 News & views 7 Comment 8 Campaigning 10 Fundraising

Children, young people and families 13 Share and support 15 Sounding off! 17 Our superstar 19 Early years Juggling act 22 Primary years COVER Oliver’s pedal power 24 Transition years Signs of progress 26 Young people Game-changer 28 Additional needs Twin challenges 30 How do I...? others who care for my child?

Information, services and events 32 Listening Bus 33 Ask the expert 34 The school year 36 Technology 38 Local groups 40 Reviews 42 NDCS resources 44 What’s on?

Role models 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.

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 • Summer 2015


news & views

Follow NDCS on Twitter:

NDCS on Facebook:

“Thank you – it is an overwhelmingly supportive and nurturing environment that you create.” Parent of child who attended one of our Get Creative weekend events

Support in India

Bharat, 6, and his sister Bhumika, 4, were both born deaf to hearing parents. Bharat was sent to a private school where his auntie taught as his parents thought this was his only chance for a decent education. Things changed when Samuha, a partner of our international arm Deaf Child Worldwide, started supporting Bharat and Bhumika with their communication and personal development. The community based rehabilitation (CBR) worker helps Bharat every week, so he doesn’t lag behind his classmates. When Bharat’s reading and writing skills improved, his parents moved him to a non-fee paying government school where he enjoys learning in an inclusive environment. The CBR worker also supports Bhumika to improve her speech and communication skills so she’ll be prepared to start school with her peers when the time comes. For many deaf children in developing countries, attending school doesn’t mean they’ll get an education – it’s thanks to additional support from community workers that they have the opportunity to thrive.

Star baker nominated for Volunteer Fundraiser of the Year! We’re thrilled to announce that one of our Big Cake Bakers was a finalist in the Volunteer Fundraiser of the Year category at the Charity Staff and Volunteers Awards 2015. Danielle Williams has raised an amazing £3,000 in the last two years by organising two Big Cake Bakes. Danielle didn’t win but we’d like to send huge congratulations to her from everyone at NDCS! To find out more or organise your own Big Cake Bake please visit 4

NDCS Families • Summer 2015

Fingerspell for NDCS – it’s as easy as A, B, C! In 2014 we had the support of 59 schools, Guide and Scout units and youth groups, who between them raised an amazing £10,500 in last year’s Fingerspellathon. Top fundraisers were pupils at Great Bradfords Junior School, raising a fantastic £815.40! A huge thank you to each and every Star Speller who took part. We are already taking registrations for 2015; you can find out more at It’s as easy as A, B, C!


Use the Fingerspellathon resources to learn the fingerspelling alphabet. Collect sponsorship to either: • fingerspell as many words as you can in a minute • fingerspell the alphabet in a set amount of time. Send your donation to NDCS and receive your Star Speller certificate.

0808 800 8880 •

NEWS & VIEWS > Juggling act

> Game-changer


Campaign victory! Back in March, after a member of our Young People’s Advisory Board (YAB) took legal action, the Government in England postponed changes that would have put at risk the support disabled students receive at university. Many deaf students rely on Disabled Students’ Allowance (DSA) to cover the cost of services like notetakers and equipment like radio aids. We’re continuing to press the Government to drop the proposals altogether, or to put in place proper safeguards to make sure no disabled student loses out. Ready Steady Swim, our sponsored swim event, was launched last year and saw people supporting NDCS by swimming in onesies, taking on the length of the Panama Canal or setting their own personal challenges, raising over £2,000! Ready Steady Swim is open to anyone of any age or ability and we’d love more people to get involved in 2015. To find out more visit www.ndcs. where you can download a registration form and find deaffriendly swimming resources to help with communication in the pool. • 0808 800 8880

Michelle’s battle for the right support for both her sons

All change for Dan who lost his hearing aged 14

Christian balances work with being Isabelle’s dad page

> Twin challenges



A helping hand for your child



“To act as a buddy, it has built my confidence and helped me to know what I have to do.” Helping Hands participant

Have you heard about our Helping Hands project* which offers free training and peer support to deaf young people aged 10–18 at schools in London, the Midlands, Yorkshire and Humber and the North East? We’re setting up peer support schemes where children are trained to act as ‘Peer Buddies’ who give help and support to other pupils. Peer support is particularly important for deaf children and young people and can have a positive impact on their school environment. If you’d like your child’s school to set up a scheme and receive free accredited mentor training for its deaf pupils then please contact or ask your child’s teacher to do so. *Helping Hands is funded by the National Lottery through the Big Lottery Fund

New wireless accessories from Cochlear Cochlear has just launched a range of wireless accessories for their N6 cochlear implant and Baha 4 bone-anchored hearing aids. These new, digital products work in a similar way to the streamers already available for hearing aids – they allow the aids to wirelessly link with any Bluetooth device. The phone clip links the N6 or Baha 4 to any devices which use Bluetooth (such as a Smartphone, tablet or laptop) allowing your child to enjoy phone conversations, listening to music, playing games or watching TV and films. Other accessories include a clip-on mini-microphone (ideal for social situations), a TV streamer and a remote control to adjust the hearing device settings. We now have these new products available for you to borrow from Technology Test Drive – for more information on these, or any other products which could help your child, go to NDCS Families • Summer 2015


Deaf awareness: What are the issues?

Young people raise the bar!

Liam, 18, is a member of our Young People’s Advisory Board (YAB). They met for a residential weekend in Leeds in February. Liam tells us more: “In February, 18 members of the YAB met to discuss a wide range of issues. First off, we discussed the stigma around deafness and how hearing people don’t recognise or understand it, so then it becomes awkward and feared by people. Secondly, we talked about how some services are inaccessible for deaf young people. Certain websites need to be more deaf-focused, and accessibility of health services and public transport was also questioned. Lastly, we think that BSL [British Sign Language] should be a more recognised language. Some members of the YAB recently met with NDCS Trustees to talk about these issues affecting deaf young people.” Read more at

In May we ran our fantastic Raising the Bar masterclass at the REP theatre sing Rai the in Birmingham, which was a huge success! 12 young stars who won places following our competition in January performed to an audience of family, friends and professionals in the showcase at the end of the second day. Big congratulations to every young deaf dancer and musician that attended, you were brilliant and we’re very proud of you! We’re now putting together a short film of the event to show the dance and music industries the standards young deaf people can achieve. Find out more in the next issue and at

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.

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: e g n e l l a h c s > www.ndc

Charity registered in England and Wales No 279523

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NDCS Families • Summer 2015

11/02/2015 10:09

0808 800 8880 •


“I stopped working to provide childcare, as there aren’t any local nurseries to provide the right kind of deaf-friendly learning environment.” Parent

“My concern is the lecturers’ lack of awareness of the need to use technology in lectures.” Parent

, s d e e N s e y g M allen h C y M

Too many of you face major challenges at all stages of parenting a deaf child, concludes our latest membership survey, My Needs, My Challenges. You told us your challenges often start immediately after the initial diagnosis of your child’s hearing loss. 23% of survey respondents said they had to wait three months or more to receive specialist support and a shocking 8% didn’t receive any support at all. This is extremely worrying because nine out of ten deaf children are born into families with little or no previous experience of childhood deafness. One in five respondents also felt the childcare they use doesn’t effectively support their deaf child’s language development. Parents continue to face challenges in the school years. Almost two-thirds haven’t seen or are unaware of the existence of an accessibility plan at their deaf child’s school. Over a third haven’t been given information about the provision of auxiliary aids and services at school. This is a major issue because with the right support most deaf children can achieve the same exam results as their hearing peers, but not all schools offer adequate support to deaf pupils, and if parents are unaware of their child’s rights it becomes harder to challenge this.

The challenges don’t stop when deaf young people leave school. Up to two-thirds of parents feel they aren’t receiving any information or advice about options and support for post-16s at college, university or on apprenticeships. Of the minority receiving some form of support, most are unsatisfied with it. If you took the time to participate in last year’s survey, thank you. You’ve given us a clear message about your needs and challenges and we’re committed to acting on your feedback. By sharing your views you are directly influencing our work to transform the lives of deaf children, young people and their families. For further details of both the survey results and our response, please go to

Susan Daniels OBE Chief Executive Officer

“Anything is possible – nothing is impossible” Deaf young people discuss education at Deaf Learners Conference.

On 25 February more than 70 deaf young people took part in a Deaf Learners Conference in Glasgow, hosted by two NDCS Young Campaigners, Neil Johnston and Amy Dawson. Held in partnership between NDCS and Education Scotland, the event was the first of its kind, providing deaf young people with a unique opportunity to come together. The conference was an open forum to discuss their school experiences and ways of overcoming barriers to success, with a view to helping them build confidence and aspirations for the future. Prior to the event, the Minister for Learning, Science and Scotland’s Languages, Dr Alasdair Allan, said, “I am delighted that more than 70 deaf young people from across Scotland are expected to attend this conference. This is an excellent 8

NDCS Families • Summer 2015

opportunity to learn about the school experiences of deaf young people, to identify the problems they may have faced in their learning and get their views and ideas on how we can make things better.” As a celebration of deaf young people’s achievements, the conference also showcased inspirational deaf role models from all over Scotland, including eight times deaf world record-holding swimmer Danielle Joyce and Frankie McLean, Social Care Manager at Deaf Action in Edinburgh. All the role models presented inspiring stories of their achievements and Frankie left the young people with some powerful advice: “anything is possible – nothing is impossible.” We know that with the right support, deaf young people can achieve as much as their hearing peers. However, while many deaf young people receive very effective support, some are still not reaching their full potential. Scottish Government data shows that some deaf young people are continuing to fall behind at school, missing out on higher education

and employment opportunities. For example, according to Government Attainment and Leaver Destination Supplementary data, in the year 2012/13 10% of deaf young people left school with no qualifications compared to less than 1% of other young people. NDCS and Education Scotland now plan to take forward all the information provided by the young people. This will help to shape suggestions and recommendations to professionals and Scottish Government Ministers on how we can improve school experiences and help close the attainment gap for all young deaf people in Scotland.


Our young campa told us:

• “There are so many talented and able deaf young people in Scotland.”

• “We all have dreams and ambitions and we just need the right support to reach them.”

• “I hope the Scottish Government will listen to us and improve support at school for deaf young people so that we all have the same opportunities to succeed.”

0808 800 8880 •


The results are in! ✓ A big thank you to over 100 of you who took part in our Campaigns Network Survey.

NDCS Campaigns Network members receive regular updates about our campaigns activity and ways to take action. Recently hitting a record 6,000 members, we were keen to ensure that everyone receives the information and support they need to campaign with us. So at the end of 2014 we launched our first Campaigns Network Survey to see what people thought about the Campaigns Network and where we could improve.

“Sometimes I’ve felt I’m completely on my own... when I found NDCS it was a relief. Now I can do what I can to help others not feel like I did.” Campaigns Network member

Over the next few months we’ll be implementing changes to improve the Campaigns Network, including: • creating more resources for our campaigners; for example videos to accompany campaigns and for information and training purposes • taking steps to engage with under-represented groups, such as young people • producing a campaigns guide for our supporters, and much, much more. Keep an eye out at campaigns.

> If you didn’t have a chance to complete the survey but would still like to share your views, please email > To join the Campaigns Network, please visit www.

Update on support reforms in Wales The results revealed some interesting findings: • Network members would like more resources to help with their campaigning, and videos about our campaigns activities • People are most motivated to take action by the topic (i.e. health or education) • Members said they like NDCS campaigns now? Did you k because: – they ‘get to the heart of current issues and are direct e mbers ar and to the point’ of our me es – NDCS responds nd relativ a s t n e r a p quickly to queries eople of deaf p – information is accessible. • Members wished to see improvements in the following areas: – Information and objectives about each campaign should be clearly displayed online – More communications on local campaigns – Engaging with different audiences including hearing people.

74% • 0808 800 8880

Plans to reform assessment and education for children and young people with additional needs in Wales are gathering pace. The Policy team attended a third sector advisory group meeting with the Welsh Government to discuss these proposals. The new Additional Learning Needs Bill and Code of Practice are due to be presented to the National Assembly for Wales this summer. The key changes are: • Changing the term special educational needs (SEN) to additional learning needs (ALN) • Statements and School Action plans will be replaced by Individual Development Plans (IDPs) • Children and young people from birth to 25 can have an IDP if they have additional learning needs • Extending the right of appeal to everybody who has an IDP, not just those with a statement. The Assembly’s Children and Young People Committee will discuss the Bill in detail later in the year. We’ll also be talking to deaf children, young people and their families to get their feedback on the proposals. We expect the law to be passed before the Assembly election in May 2016 and the changes should start to happen in September 2017. To find out more please email NDCS Families • Winter 2015 2014 NDCS Families • Summer


Fighting for more support for deaf children Charities rely on the kindness of companies who undertake pro bono work on their behalf. We are no different…

In an exciting partnership, European law firm Fieldfisher is representing and advising families with education cases to ensure that deaf pupils get the right support at school. We have seen an increasing demand for support in the past couple of years as a result of cuts to local council and legal aid budgets. We predict this demand will continue to grow with many more children, young people and their families needing our support and advice, making our partnership with Fieldfisher vital. We’ve trained over 30 Fieldfisher staff to take on casework, and since 2014 they’ve given 184 hours of time, which is valued at about £50,000. In that time they’ve won eight cases, securing speech and language therapy provision, teaching assistant support and statutory assessments. We’re excited about our plans for the future as Fieldfisher are keen to expand their support into other areas of our work. Our strong relationship will help to safeguard the futures of deaf children across the UK. 10

NDCS Families • Summer 2015

“Fieldfisher has helped me fight for the provision I was looking for and more. I cannot ask for better support.” — Parent of a deaf child

Could your company help NDCS? We’d like to develop more pro bono partnerships in key areas like PR and media and legal sectors. If you know a company who could help, please email for more information.

0808 800 8880 •


Run and S C D N r o f e s i ra Did you know you can sign up to any run in your local area, or further afield, and use your place to raise money for NDCS? Every year supporters around the UK do this; two of them tell us their stories.

Why did you run for NDCS? Rachel: My mother is deaf. Jason: Our daughter Lily was born at just 25 weeks. After battling for life for three months Lily was diagnosed with a moderate to severe sensori-neural hearing loss.


5 at the 2 1 £ d e s i ra oral Run m l a B K 0 1

...and Jason and a team of family and friends lymouth ran the P thon a Half Mar 1.40 2,25 raising £

Why this event?

What are your top tips for fundraising?

Rachel: The scenery was beautiful! Jason: We knew it would be a challenge and so people were more likely to sponsor us as they probably thought we wouldn’t finish it!

Rachel: To be committed and positive; keep focusing on what you’ll achieve by the end of it. Whether you raise a lot or a little, it’s all better than nothing. Jason: Lily was key to raising so much as she’s a walking advert for NDCS. Our pub customers and local businesses supported us and friends and family helped spread the word to a wider range of people.

What support have you received from NDCS? Rachel: Lots – from the first email, right until after I’d completed the run. I got fundraising sheets, a running vest, motivational emails and a certificate. Jason: NDCS gave us the opportunity to meet other parents and children; we try to attend as many of the groups as possible. We own a local pub so we wear NDCS t-shirts and have a collection tin.

How did you feel during and on completing the event? Rachel: Absolutely amazing; it felt so good to challenge and surprise myself by actually running a 10K! You never know what you’re capable of until you push yourself. Jason: When we arrived our anxious nerves turned into excitement. I’m not going to lie, it was very hard but I received so much support from the crowd cheering us on and from other runners on that I made it to the finish line! • 0808 800 8880

Have you used any services or information from NDCS? Rachel: As a youth worker I download information and worksheets to inform the young people I work with about the deaf community. Jason: We subscribe to the magazine and use your website as a vital source of information. If you’ve been inspired why not visit for a comprehensive list of races. Please contact to let us know about your running challenge!

NDCS Families • Summer 2015


Struggling to hear in a noisy environment? Research has shown that over a distance with loud background noise, hearing aid users with a Roger system understand speech better than people without hearing loss by 62 percent. The Roger Pen is just one of many ingenious solutions from Phonak. *

Simply ingenious *


Share & support

Recent discussions: Temper tantrums Ear wax Broken hearing aid

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 Topic: Mainstream school

Topic: Temper tantrums and very challenging behaviour

My daughter has bilateral cochlear implants. She has always gone to a mainstream school and doesn’t sign. She just started secondary school and I’m beginning to think that everything we’ve done hasn’t been right for her. <<<gillyD>>>

My eight-year-old son is profoundly deaf and we are finding managing his behaviour very difficult. At school his behaviour is great but once he arrives home he appears to take it out on everybody. Anyone got any tips on working through this? <<<Jacqueline>>>

I’m profoundly deaf, as is my son. We sign and speak. Is your daughter getting a chance to meet other people with a hearing loss, especially others with implants? <<<tjjobson>>>

We are also having problems. Our seven-year-old daughter is perfectly behaved at school, and continually angry, stroppy and disruptive at home. Is it just driven by tiredness? <<<Anon>>>

My son is bilaterally aided with severe hearing loss. He has always been in mainstream education and although there have been doubts we know he’s been in the right place. A few years ago we felt he was missing out because he hadn’t been involved with other deaf children. He went on a weekend with our local deaf children’s society and loved it. <<<Anon>>> My son was at a deaf school until he was 13, socialised well and was happy. He now goes to a mainstream school and uses an interpreter from the deaf school. The cooperation between them has allowed him to excel. Don’t forget that deaf clubs and holidays, web chats and social media can also help bring deaf children together. <<<AnneM>>> • 0808 800 8880

My daughter is now 14 and has just grown out of this type of behaviour. I put it down to the sheer difficulty and frustration she experiences with being deaf. We give her lots of space at home, lots of time to chill out and just do her own thing. The fact that your son is well-behaved at school suggests that he is letting out all his frustration in the place he feels the safest with the people that he feels safest with. I think he will grow out of it as he learns how to deal with his emotions. <<<Anon>>>

For more information about local groups, or to find one near you, visit localgroups. We have a website especially for deaf young people To find out more about deaf children and tiredness check out NDCS Families • Summer 2015


We believe that all pupils who are deaf can learn and take an active part in achieving their full potential. We teach pupils from Early Years to Sixth Form to acquire language skills in BSL and English and become confident and independent young people.

Established 1829

Interested? Come and visit or go online: Telephone: 01302 386733

Doncaster Deaf Trust

A National Centre of Excellence The Doncaster School for the Deaf is owned and operated by Doncaster Deaf Trust


Sounding off! Hayley’s family are hunkered down waiting for the danger to pass as she runs the final gauntlet of her GCSE exams. Saturday afternoon I’m in the hallway straining to hear anything from upstairs but there’s only silence. I know the exam monster is in its room. The door is shut with an angry orange glow around it. We’ve heard occasional shrieks, cries and gnashing of teeth, rampages to the kitchen for human, preferably chocolate-covered, bones to feed the beast, followed by house-quaking slams of her door. But right now it’s quiet. It can mean only one of two things – she’s revising or she’s on Facebook. Dare I pluck up the courage to find out? Hmm, not yet. I’ll hold faith a little longer, which will encourage her if she’s doing the right thing and perhaps induce guilt-powered resolve if she’s not. We’re several weeks into the GCSE onslaught, with less than a fortnight until it’s all over, bar the shouting. The house is a tinderbox, the advice is not to even make eye contact, definitely not to ask how it’s going or offer any tips about revision or exams. Or anything. But all that aside, Hayley’s being a trouper, struggling along, knuckling down to study. She is more practical than academic and it doesn’t come easy to her. Also, on the bright side, exam access arrangements are in place, meaning 25% extra time and a separate room – and I was notified in advance. That’s progress from two years ago when Hayley was told by the SENCO at the end of a class exam that she wasn’t eligible for extra time and should leave the room along with nonspecial needs pupils. This was Hayley’s right yet the SENCO didn’t know and I had to battle for it. • 0808 800 8880

There have been wobbly moments, including Hayley walking out of her Art GCSE exam on the final day. But there were trying circumstances – a blaze broke out when the pupil next to her accidently set light to her own final piece. With the whole room in shock, the poor girl in tears, Hayley and another girl upset about damage to their final piece from water used to douse the flames, it perhaps wasn’t the moment for the art teacher to tell Hayley her home-prepared sketchbook pieces weren’t very good. Hayley’s already low self-esteem knocked, still unnerved by the blaze, she’d shouted that she was obviously rubbish before running from the room. I was worried she’d be disqualified but it’s all okay. I told Hayley I understood but it probably wasn’t good to make a habit of it. Hold it together Hayley, you’ve come this far. The light at the end of the tunnel is nearly here, last exam on the 11th. The prom ticket’s paid for, the dress tried on, the ‘Leavers 2015’ hoodie ordered. Just keep going Hayley, hold your nerve and keep your head down for another fortnight. Then you can embrace a summer of freedom and the next stage of your future.

> Read Tiger Mother’s blog at: You can find out more about exams and access arrangements at

NDCS Families • Summer 2015


Learning for Life and Work

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.

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 farm

Our school

Our college


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

Your child, their future, our priority Oak Lodge is a residential and day school for students with hearing, speech, language and communication needs aged 10-19.

Aspire, Believe, Achieve We create individuals who are independent, organised, motivated, innovative, inquisitive and confident. To find out more about our inspirational school or for enrolment information, contact us on: t: 020 8673 3453 e: w:

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12/01/2015 15:46


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. I’m very proud of my son Jack who had the courage to tell us he was struggling at school as it was too noisy. After consulting with the school and his Teacher of the Deaf we moved him to a smaller, quieter nearby school with a more acoustically-friendly building where he’s now doing so much better. What a brave decision at six years old! Karis, mum to Jack (7) who is moderately deaf

We’re very proud of Patrick who received an impressive set of 10 GCSEs including A grades in English, RE, Computing and Media. To recognise this, he received the Gareth Jones cup which is awarded in memory of our late Chair of Governors. Alan Gray, Qualified Teacher of the Hearing Impaired at Cherry Willingham Community School in Lincoln, who teaches Patrick (16) who is profoundly deaf

We’re very proud of our daughters Kitty and Daisy who won an award at their mainstream school for running their own sign language club at lunchtime. They both have Pendred syndrome and wear bilateral hearing aids. Emma and Jake, parents to Kitty (10) and Daisy (7) who are both severely deaf • 0808 800 8880

Caiden has moderate – severe hearing loss which was diagnosed at three and a half. He struggled with his confidence and independence but has progressed amazingly since getting hearing aids. He recently achieved his level 7 British Gymnastic Proficiency Award. I am one very proud Mummy! Laura, mum to Caiden (4) who is moderately – severely deaf

We’re very proud of our son Lucas who loves the nursery he’s attended since he was one. He gets on well with hearing children and the staff and he’s learning sign language which is wonderful.  Hayley and Charles, parents to Lucas (2) who is profoundly deaf My niece Lauren is severely deaf and wears bilateral hearing aids. She doesn’t let this hold her back and is thriving in mainstream school, in many of the top groups. She is gaining confidence and is a bright, kind, sociable girl who looks after her friends. I’m so proud of her and everything she’s achieved. Karen, aunty to Lauren (8) who is severely deaf

During her cochlear implant surgery my daughter Harriet’s vestibular system was lost permanently. She had to relearn how to sit, stand, crawl and walk using her eyesight and touch. She has been an absolute powerhouse of determination and lets nothing stand in her way. She has shown no fear and we could not be prouder of her. Alison, mum to Harriet (2) who is profoundly deaf

What has your deaf child done to make you proud? Whatever their level of deafness and 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.


Day and residential School and College for Deaf students age 4-24

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Scan the QR code to visit our website!

Christian, dad to Isabelle (5) who is severely to profoundly deaf and has additional needs, tells us how he juggles full time work with the needs of his family.

Juggling act When new dad Christian held his baby girl in his arms for the first time he couldn’t have imagined what would unfold over the following weeks. “Isabelle failed the newborn hearing screening but we were reassured it was most likely the result of debris in her ear canals,” says Christian. “It did hang a dark cloud over what was a beautiful occasion – the birth of our first child. But we thought our worries would be put to rest when Isabelle had an Auditory Brainstem Response (ABR) test ten days later.” Instead, Christian and his partner Helen were told Isabelle had a permanent bilateral sensorineural hearing loss. “We left the clinic and sat in the car completely heartbroken,” remembers Helen. > • 0808 800 8880

NDCS Families • Summer 2015



Things became even more complicated when the couple started investigating the cause of Isabelle’s deafness. Despite being told it was most likely a genetic cause, urine and blood tests revealed she was carrying Cytomegalovirus (CMV), one of the most common causes of permanent deafness in children. “Isabelle had an MRI which showed changes to her brain, and we were quickly referred to Great Ormond Street Hospital (GOSH) where Isabelle was put on an antiviral drug called Ganciclovir,” Christian says. It was a massive shock and Christian admits it almost made the deafness seem insignificant. “CMV has such big unknowns; it can cause progressive hearing loss and all sorts of disabilities,” explains Christian. “It was very challenging in the beginning. The drugs weakened Isabelle’s immune system, meaning our friends and family couldn’t visit.” Isabelle got her hearing aids at three weeks and luckily took to them well. Another breakthrough was finding out about the Elizabeth Foundation, a charity that prepares children for mainstream school. “Isabelle started attending from four months and she loved it,” remembers Christian. “It was a great support network for us – we met people going through similar things. But it was a two hour journey each way, so just after Isabelle’s first birthday we moved from London to Surrey, reducing the journey time to 40 minutes and meaning that I could commute to London for work.”

“It’s hectic having to balance the needs of all our children” Because of the CMV, Isabelle was being closely monitored. “Helen had noticed that Isabelle’s tongue was always sticking out, and was concerned about it,” remembers Christian. “She discussed it with the paediatrician who suggested it could 20

NDCS Families • Summer 2015

Isabelle’s sis Beatrice

be due to Worster-Drought syndrome (WDS), a form of cerebral palsy causing problems with swallowing, feeding, talking and other actions controlled by the mouth and throat. We were referred to a neurologist at GOSH who confirmed the diagnosis. This opened up a whole new wave of emotions, not knowing what the future would bring. Isabelle’s fine and gross motor skills are affected so she can be quite clumsy, but the biggest issue is with feeding as she can’t control her tongue and is at serious risk of choking. She needs one-to-one care when eating.” Communicating with Isabelle is also a challenge. The family have adopted a Total Communication approach, using speech and Sign Supported English with her. “Isabelle has an enormous desire to communicate. We struggle to understand her sometimes, which is frustrating and upsetting. But she’s becoming more patient and we can eventually get there,” says Christian. Isabelle attends a mainstream school with a hearing impaired unit

who have worked hard to develop her fine motor skills. “They’re fantastic,” smiles Helen. “They’ve worked really hard with Isabelle to make her signs more accurate and easier to understand. Her speech is coming on too – she still struggles with consonants but is becoming more intelligible. School are great at communicating with us and letting us know what Isabelle’s doing on a daily basis.” “Overall we’re really lucky with the level of support we’ve had,” adds Christian. “Our family and Surrey Deaf Children’s Society have been enormously helpful, as has NDCS – we attended a weekend for families with a newly diagnosed deaf child and have had support with our Disability Living Allowance claim and Isabelle’s Statement of Special Educational Needs.” It can be challenging for Christian, who works full time, to keep up with Isabelle’s diary of appointments. “The daily running of Isabelle is very much in Helen’s hands, as she no longer works,” says Christian. 0808 800 8880 •

EARLY YEARS “I get involved as much as I can with Team Around the Child meetings, follow-ups at GOSH, and parents’ evenings. Although I can’t always attend appointments in person, having email contact with some of Isabelle’s professionals keeps me involved, and Helen relays pretty much word for word what she’s discussed during face-to-face meetings.” Life has become even more of a juggling act since the arrival of Isabelle’s younger siblings, Beatrice (2) and Edward (five months). “It’s hectic having to balance the needs of all our children. Having three means we now have to make a more conscious effort to set aside special one-to-one time. I religiously leave work on time so I can make it home for the build up to bedtime,” says Christian. “It’s difficult missing out on certain things as I’m out of the house for a large part of the day, but I take comfort in the fact that the children are in great hands with Helen as a mum. What has really helped me over the years is talking through my situation with employers and friends. You never know how accommodating your manager might be with regards to flexible working hours. And some of my friends really surprised me with the way they reacted and the level of support they gave me. Sometimes I find other parents challenging though, when they say things like ‘I wish the kids would keep quiet’ or ‘I wish they didn’t put everything in their mouths’. For us it was a massive day when Isabelle first put food in her mouth.” “Having a child with additional needs has given us a new perspective on life,” adds Helen. “It’s made us want to celebrate every milestone, including things others take for granted.” Christian is optimistic about Isabelle’s future. He says, “She’s a happygo-lucky little girl – sunny natured, sociable and determined. I think her future will be purely dictated by what she wants to achieve. If there’s ever a barrier I’ll do whatever I can to help her remove it.”

“Having a child with additional needs has given us a new perspective on life”

Cytomegalovirus (CMV) is a common virus and often causes no symptoms. However, CMV infection can cause illness in anyone with a weak immune system, such as an unborn baby (congenital CMV). Congenital CMV causes about 10% to 20% of deafness in children in the UK. For more information, visit or Because of work or other commitments, fathers of deaf children aren’t always able to attend appointments and find out information first-hand. Visit for information and tips from fathers of deaf children. • 0808 800 8880

04 to

NEW sum m chec er klist

years old

Your summer checklist for the pre-school years Sweat and hearing equipment

Fingers crossed for lots of sunshine this summer! But sun and heat can mean sweaty hearing aids or cochlear implant processors. To prevent against damage from moisture, as well as dirt, you can get removable covers for under £20. Ear Gear, available through Connevans (, comes in a range of colours for a variety of hearing equipment.

Early reading and writing

We’ve got practical ideas to help your child develop their language and early reading and writing skills, including games and activities to help make it fun! The booklet’s called Helping your Deaf Child to Develop Language, Read and Write (3–4 years old).

Resources for early years settings

If your child will be attending a new crèche, nursery or pre-school, we have information that can help the staff understand your child’s needs. Key resources include Supporting the Achievement of Deaf Children in Early Years Settings (booklet), Early Years Matters (DVD) and Creating Good Listening Conditions for Learning in Education: For parents (factsheet). You can get copies by contacting our Freephone Helpline or downloading them from publications.

NDCS Families • Summer 2015 NDCS Families • Autumn 2014

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Oliver’s pedal power! After a wobbly start, seven-year-old Oliver is now happy and confident cycling to and from school.

Oliver’s brother Benjamin


um Nicky wasn’t “We wouldn’t be where we are today surprised when her without NDCS. We’ve got involved seven-week-old son in things we wouldn’t otherwise Oliver was diagnosed have done and have a whole new as moderately deaf. “It was a relief to community of deaf friends,” Nicky says. get a formal diagnosis after suspecting. “Our local group, Plymouth and District I’d read a book about how babies Deaf Children’s Society (PDCS), has should respond to noises and Oliver helped all of us. Oliver is part of the hadn’t,” she says. “Although it was mini youth club ‘the Adventurers’ overwhelming as we had no experience which runs one event a month and this helps with deaf awareness, role or knowledge of deafness, it was models and deaf identity.” “He’s at a reassuring to finally know.” Dad Mike felt differently. “Ever the optimist, I large mainstream school and we’re didn’t trust the first test Oliver failed conscious that we don’t want him to and I never contemplated the severity think of himself as different. We want him to see other hearing aid users,” of the situation. When I heard he was definitely deaf I thought ‘what do I do?’” adds Mike. Oliver’s younger brother Benjamin, 4, he says. “Fortunately we came across passed his newborn hearing screening NDCS quite quickly, which changed but a follow up ‘sibling screening’ our lives for the better.”


NDCS Families • Summer 2015

revealed a very mild loss. “Because they looked at him so closely, because of Oliver, they found something they might not otherwise have found,” explains Mike. “It’s a case of watch and wait,” says Nicky. “We’re not proactively doing anything, but Benjamin benefits from the way we communicate with Oliver. We’re deaf aware with him too and he’s learnt some sign language so they can communicate when Oliver doesn’t have his aids in. Oliver’s deafness is now severe and he has glue ear on top. We sign with him if he says ‘pardon’ and hasn’t understood us. We also wanted to equip him with everything so he can choose how he wants to communicate when he’s older.” Oliver was at nursery when he first attempted cycling, but initially 0808 800 8880 •

PRIMARY PRIMARY YEARS YEARS struggled with balance. “He never really got on with a balance bike or a bike with stabilisers,” says Mike. “But after a trip to Centre Parcs where the boys enjoyed being in a trailer on the back of a bike, I decided to get a tag-along (an extra wheel and pedals) attached to the back of my bike to pick Oliver up from school.” “We also tried to encourage him to use the balance bike to ride independently, but he was reluctant,” Nicky adds. “So we bought him a scooter for his fifth birthday which helped with his balance.” By last summer both Oliver’s balance and confidence had greatly improved. “We bought him the right-sized bike and spent the six weeks over the summer practising. We talked about the route, roads to cross and the green cross code. We took the bikes up to the school, pushed them for a bit, then rode them, each time riding that little bit further,” says Mike. “The normal plastic cycle helmets for kids interfered with his hearing aids so we got a BMX one which cuts up behind and doesn’t knock or push them. It’s a perfect helmet for safety and means Oliver can hear as well as without it. PDCS also offered us a high visibility jacket with ‘caution I’m deaf ’ written on the back. I didn’t think the wording would make much difference, but I was surprised that it instantly changed motorists’ attitudes and slowed them down. It also means pedestrians behind him can see it.” Mike also made use of the radio aid Oliver uses at school. “It means I can keep in touch with him, warn him about things coming up, remind him to look both ways, even encourage him to pedal when he’s tired,” he says. When school started again, Oliver was happy to cycle home a couple of times a week on the opposite side of the road to Mike where he could see him. “He’s safer on the other side and I can still talk to him with the radio aid. On occasions where we can’t use it, like bad weather, we have a different routine for crossing roads. He knows how he can ask for help,” says Mike. “He has no problems with cycling now, although sometimes he struggles with pedestrians on the pavement when he says ‘excuse me’, as he might not hear their response.” Nicky and Mike advise other parents not to worry about their deaf child cycling. Nicky says, “It’s about setting boundaries. We’d say ‘cycle to the next lamppost and stop’. We did it in sections to prove trust and that he would stop where he was told.” The family plan to do more cycling this summer. “I’ve bought a bike rack for the car so we can do some track riding. I took the boys to the track last weekend. The high visibility jacket was useful there, so others could be aware that Oliver wouldn’t hear bells when they rode up behind him,” says Mike. “And Nicky’s bought a bike now too so we can all go off this summer and be more adventurous!”

“It means I can keep in touch with him, warn him about things coming up…”

For more information on deaf-friendly cycling you can download our new factsheet Cycling and your Deaf Child from For more information about local groups, or to find one in your area, go to • 0808 800 8880

NEW sum m chec er klist

5 10 to

years old

Your summer checklist for the primary school years Summer clubs and deaf awareness

If your child is going to a new sport, art or leisure club or activity this summer, our Me2 team can provide lots of practical tips and support to help the staff be more deaf friendly. Find out more at uk/me2.

Getting your child to wear their hearing aids

Children go through phases of not wanting to wear their hearing equipment. Helping them to decorate their hearing aids or implant processors might encourage them to wear them. Going to a local group event so your child can see other children or adults wearing them could also help.

British Sign Language (BSL) courses

A lot of BSL courses start in September. Check out learn for courses in your area. Our guide Learning British Sign Language explains how you could get help with the costs if you live in England. Get a copy by contacting our Freephone Helpline or downloading it from publications.

Personal passport for a new teacher

If your child is getting a new teacher next year, it can be helpful to give them written information about your child’s needs by creating a personal passport. You can see examples at NDCS Families • Summer 2015


Signs of progress Unable to be taught BSL in the usual way, parents Riaz and Zulfikar initially struggled to communicate with eleven-year-old profoundly deaf son Usman, until NDCS stepped in…


sman is a happy eleven-year-old who likes playing on his iPad and has asked for a Playstation 3 for his birthday, but communication within the family used to be a lot more difficult. After he suffered an ear infection just before he was two, parents Riaz and Zulfikar took Usman to a specialist who informed them he was profoundly deaf. He was referred for a cochlear implant, but at the assessment they discovered the cochlea was missing from his right ear and malformed in his left, meaning he couldn’t be implanted. “I was extremely worried about him and even now I don’t have the words to explain how that felt,” says mum Riaz. In his early years, Usman communicated using pointing and gestures. “If he wanted to eat or drink something, he would grab my arm, take me to the kitchen and point at what he wanted,” remembers Riaz. Then when he started a specialist school for deaf children, Usman was taught British Sign Language (BSL). When that school closed down, he was moved to a mainstream primary school with a hearing impaired unit where he continued to communicate by signing. However, as she spoke very little 24

NDCS Families • Spring 2015

English, it was difficult for Riaz to learn to sign herself. When Usman was five, Riaz was put in touch with Varshali, a community development officer at NDCS, who told her about some sign language classes that were running for parents/carers in her local area. Despite the language barrier, Riaz signed up. “Initially it was very challenging, but Varshali helped me a lot and Tasneem, an NDCS family support volunteer who speaks Urdu, helped me to understand what was being said,” says Riaz. “Before, I couldn’t communicate with Usman as much because we weren’t able to have a full conversation, but the classes made a big difference.” Riaz completed the first set of sign language classes and started a second, but then her health deteriorated and she was no longer able to attend. Shortly after this, Usman’s school flagged that he wasn’t making progress with BSL at the same rate at his peers. “There was a meeting held by the school, including

“His behaviour is better now because our communication is a lot better”

0808 800 8880 •

TRANSITION YEARS the headteacher, a social worker, the school nurse, Usman’s paediatric doctor and our housing officer. It was quite intimidating,” says Riaz. “It was hard for me to put my views across at the meeting. Usman’s other challenges having a wider impact on his learning and development. He has some learning difficulties which is why he wasn’t learning at the same rate as his peers.” Social services gave Riaz three months to source another sign language class, but with her lack of English and health issues, there was little support available for her. Luckily, thanks to funding secured by local group Scottish Minority Deaf Children’s Society (SMDCS), a teacher was able to come to the family home and provide ten one-to-one lessons for both Riaz and Zulfikar. Tasneem also attended the first one so they could be sure they would understand the lessons. “It helped us a lot. Before we could maybe only use one word at a time and now we can communicate in sentences,” says Zulfikar. The school also raised concerns about Usman’s behaviour and Riaz and Zulfikar worked hard to communicate with Usman to improve it. It was a slow process but increased understanding of each other helped. “His behaviour is better now because our communication is a lot better. Before he would try to tell us something and we weren’t able to understand him fully so he’d get really frustrated. Now when he says something we can understand and reply accordingly and he’s happier,” says Zulfikar. “We’d like to impress on other parents in the same situation that it’s extremely important to learn sign language. It will improve family connections, the child’s behaviour and the family atmosphere. You can achieve a lot and grow with your child.” Riaz and Zulfikar are currently taking a second block of one-to-one sign language lessons thanks to additional funding NDCS was able to help them secure from a Glasgow based company. Usman now has one more year at primary school. Zulfikar says, “We want him to be able to stand on his own two feet and communicate with people, even if he has to write it down to get his message across, then he can get a job when the time comes or go into business. If he can’t communicate with people then his hopes will die within him, but if he can then he’ll be able to achieve a lot.” There are many reasons why families struggle to access BSL including cost, time or lack of provision in their area. Our website provides information on the different ways you can learn BSL, where to find sign language course providers and whether help might be available to you from your local authority. Go to

11 13 to

years old

Your summer NEW checklist for cshummer eckl ist the primary to secondary transition years Summer blockbusters

If your child is going to the cinema this summer, you can check for subtitled film showings at www.yourlocalcinema. com. Contact the venue beforehand to see if they have any equipment such as a room loop, neckloops or headphones. For information on which products can help deaf people to listen and communicate in noisy and public places, check out communicatinginnoisyplaces.

Cinema Exhibitors’ Association Card

If your child is getting DLA then they can get a national card that entitles them to one free cinema ticket for a person accompanying them. Download an application form from www.ceacard.

Sources of funding

If you need extra money to cover the cost of things for your child, there might be a source of funding you can apply to. has a database of grant-giving organisations. You can use their search tool to help you find the most appropriate funds based on your circumstances and needs. We also have a factsheet Sources of Funding for Families with Deaf Children and Young People that provides a summary of organisations that give grants to some families with a deaf child. Get it from our Freephone Helpline or download it at publications. NDCS Families • Summer 2015


“I hardly knew anything about being deaf ”

Game-changer 16-year-old Dan became profoundly deaf due to meningitis aged 14 and received cochlear implants soon after. While this was a difficult time, he’s now motivated to make a difference for deaf children and young people in his local area.


an had just done PE at school when he started suffering from a bad headache. “My local football team were playing that night, so when I got home from school I thought I’d have an hour’s sleep and then I’d be alright to go and watch them,” remembers Dan. “The next thing I know, a doctor’s leaning over me and I’m in A&E.” Dan had to stay in hospital for a month while recovering from the meningitis and it was another two months before he could return to school. “I found out I’d lost my hearing when I was still out of it from the meningitis,” says Dan. “I didn’t accept it at first. I hardly knew anything about being deaf, and the things I thought I knew weren’t right. I especially didn’t know anything about cochlear implants until I got them!” Dan struggled to get used to hearing with his implants. “There were little things that caused problems like not hearing the doorbell or my alarm in the morning. I now wear a special watch that’s connected to the doorbell which vibrates when someone’s at the door. I use other technology like a vibrating fire alarm under my pillow, a radio aid for school, and a loop system in the house for watching TV. “I find it hard when I’m out in public and people don’t realise I’m deaf,” Dan explains. “And when I first got out of hospital people were very big with their lip patterns and talked slowly. I had to tell them to speak normally.” But it’s not all bad for Dan; he explains that one of the main benefits of being deaf is being able to pick when he wants to hear. “I can choose not to hear my mum nagging at me,” he says cheekily. Also, Dan’s school have been 26

really supportive in explaining his deafness to the other students. “My Teacher of the Deaf came in and told the school about deafness. We also had a disability awareness week and I helped the teachers with deaf awareness.” Now Dan’s become accustomed to his deafness and has the right support in place, he’s turned his thoughts to his future. “I’d like to work with deaf children; maybe through sport as well as teaching in a classroom,” says Dan. “At the moment I’m volunteering with deaf children in my local school to get experience. I think I can help them more than hearing people can because it’s hard to imagine being deaf without being deaf yourself.” Dan knows what steps to take to achieve his dream. “As soon as I leave school I’m going to study childcare at college and then at university. Then after a couple of years’ teaching experience I can do deaf teacher training.” As well as volunteering, Dan has also set up a local deaf football club. “I’ve always been into football,” he explains, “and when I lost my hearing I looked around for local deaf teams and there weren’t any. I thought ‘someone’s got to do something about that!’ I got in touch with the Welsh FA and they helped me set one up. We’ve started training and it’s going well.”

“Being deaf is nothing to be scared or ashamed of ”

0808 800 8880 •

YOUNG PEOPLE Playing football again is a challenge for Dan because his deafness has affected his balance. “I was used to having a good sense of balance and now it’s harder. I have to retrain my brain,” Dan says. Dan has come so far since he lost his hearing nearly two years ago. He’s turned a difficult experience into something positive for himself and other deaf children and young people in his area. His message is clear: “being deaf is nothing to be scared or ashamed of. Some people wear glasses to help them see, and some people need an implant or hearing aid to help them hear. There’s no reason why deaf children can’t succeed at anything they want to if they have the right support.”

Dan tells us about his cochlear implants

I had my right implant two months after the meningitis and the left one about eight months later. I knew I wanted to get them without having to think about it. The surgery was fine – most people go home the same day but because I was still recovering from the meningitis they kept me overnight. When it was switched on for the first time it beeped a lot and then I started hearing noises. I could hear my mum right away which was a bit scary! The left one doesn’t work as well though. I take medication and have more doctors’ appointments now, but having the implants hasn’t affected my social life or anything.


NEW sum m chec er klist


Your summer checklist for young people aged 14+ Volunteering

Volunteering can be a great way to gain experience and skills. Opportunities with NDCS are incredibly varied – from supporting deaf children and young people across the UK to helping in one of our offices. Volunteers have to be aged 18 or older. Find out more at www. If your child is younger than 18 or is interested in other volunteering opportunities, the website has a database of opportunities around the UK.


Has your child seen our video blogs by other deaf young people? They talk about a variety of topics including deaf awareness at college, access arrangements at university, and the top five reasons why they like being deaf. Check them out on our YouTube channel ndcswebteam or the Buzz

Leaving school

If meningitis has affected your child, you may find our guide Meningitis and Childhood Deafness useful. This can be downloaded from We have lots of information about cochlear implants at To find out how to make activities deaf friendly, visit uk/me2. We have resources to help improve deaf awareness among teenagers at

Is your child starting college, university or an apprenticeship? We have lots of resources for parents and carers, young people and course providers to ensure they know their rights and get the right support. Check out leavingschool and leavingschool. You can get a copy of Supporting the Achievement of Deaf Young People in Further Education from our Freephone Helpline or download it at www.ndcs. • 0808 800 8880

NDCSNDCS Families • Summer 2015 Families • Spring 2015

27 27 27



Twin challenges

Getting your deaf child into the right school can be even tougher when you have twins with different needs – like Michelle’s boys. But with the support of NDCS she managed to find the right solution.


ichelle leaps aside laughing as a pint-sized Spiderman, closely followed by another, crashes into the kitchen riding an invisible zip wire. Her five-year-old twins love Spiderman; but whereas Oscar will arrive speedily, Liam will take a few tumbles and be a little behind. But neither boy minds; their purpose is one even if their abilities differ. The boys were born at 27 weeks, weighing less than 2lbs. Liam had no heartbeat and didn’t breathe for the first 11 minutes of his life. Both went on life support. Liam had a serious heart defect and struggled to survive until he had major surgery at four weeks. At two months it was Oscar’s turn for surgery, his heart problem due to premature birth. The traumatic start left both boys with hearing loss. An infection following surgery caused Liam brain


NDCS Families • Summer 2015

damage and medication left him blind in his left eye and with impaired vision in his right, able to see just 20cm distance. But both boys thrived after all surgeries and nothing else mattered to Michelle and husband Paul. “We were told several times Liam wouldn’t last the hour,” says Michelle. “When they warned gases used to keep him alive might cause blindness, there was no choice: be blind and live, or die. We were thankful they could save him.” Five months later both boys were home. “It was wonderful having them home,” says Michelle. “As ‘long-termers’ in special care they were unresponsive, unused to being picked up. We made up for lost time, even took them camping while both were still on oxygen; it was a happy family holiday after such a tough start!” At one Liam was diagnosed with cerebral palsy as a result of his infection and given splints to help him walk, and

later a walking frame and a wheelchair for longer distances. “They expected us to cry but after coming so close to losing him, it was no biggie,” says Michelle. Hearing tests showed Oscar had significant bilateral hearing loss, which rapidly became profound. He had cochlear implants at two, which gradually helped. Then Liam was diagnosed with significant progressive hearing loss in his right ear and moderate loss in his left, and hearing aids helped hugely. The boys learned to sign and developed speech, though Oscar’s was less clear. Both boys went to a private nursery. Determined to secure the best education, Michelle and Paul visited local schools but felt none met their needs. “It was tricky, the boys had different needs,” says Michelle. “But then I realised that while everyone was focusing on Liam’s needs (mobility 0808 800 8880 •

ADDITIONAL NEEDS and vision) it was their hearing that was key. Once Liam was sat in a classroom he’d be fine, he had no learning difficulties – but if they couldn’t hear, how could they learn?” Liam’s visual impairment teacher felt it best Liam attend a school with a hearing unit, alongside his brother. “She said if he hadn’t been a twin, a visually impaired school would be best but he relies a lot on Oscar; and they rely on each other for moral support,” says Michelle. “Also it’s hard to predict whether Liam’s vision or hearing will degenerate most.” The best option was a mainstream primary school with a hearing impaired unit just outside their county but they were refused. A battle began, with Michelle requesting regular meetings with a raft of key people, including two local authority officials from different areas. Frustrated at lack of progress and overwhelmed with organising and chairing quarterly meetings, Michelle contacted NDCS who put her in touch with Children and Families’ Support Officer, Wendy. Wendy supported the family in meetings – making sure they were able to get their views across, helped Michelle understand her legal rights, and provided tools like the NDCS school checklist. Michelle revisited the schools and felt certain her choice was right due to the technology, deaf role models and level of teaching staff who could sign. Finally after 11 months, their local authority agreed to their chosen school and with support from Wendy the boys got SEN statements as they started in March. Liam receives one-to-one support and both boys spend time in the hearing unit for intensive sign lessons. “They settled in instantly and progressed well,” says Michelle. “Liam has an interactive magnifier which helps him see teaching materials. All hearing pupils and teachers sign. Oscar receives no extra support – being deaf there is normal.” Michelle’s confident they’ve made the right decision. “The boys need each other, though they’re very different,” she says. “Oscar is cheeky, a livewire, while Liam is very loving. Liam has his ‘wobbly legs’ as he calls them and Oscar is protective. When they run and Liam falls over they don’t get frustrated, Oscar helps him up. For us, every moment of their lives has been a positive experience, except their suffering. They were meant to be the boys they are, meant to be different; we teach them that’s a good thing. NDCS has been amazing. They’re brilliant when you’re stuck or looking for help – ultimately you have to take responsibility but they enable you.”

“If he hadn’t been a twin, a visually impaired school would be best but he relies a lot on Oscar”

Visit for more information on deaf children with additional complex needs. For more information and resources on choosing a primary school, visit • 0808 800 8880

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

NDCSFamilies Families••Summer Autumn 2015 2014 NDCS


How do I... ? …support others who care for my child?

Your child will come into regular contact with other adults such as teachers, club leaders and family friends. Here, four families share how they’ve supported others to understand their child’s deafness. Gerri is mum to Megan (14), who is moderately deaf and wears hearing aids.

It was difficult when Megan was first diagnosed; her nan was convinced there wasn’t a problem. Now, when people talk to Megan and her facial expression doesn’t match what’s being said to her, I remind them she probably didn’t catch what they said. When she was at primary school, I kept being told Megan needed to listen more in maths. I had to approach the school and ask whether they were making sure she could hear. Megan used to take swimming lessons, and I told the teacher Megan has to concentrate a lot harder to hear, and if she doesn’t hear, she’ll guess what to do. They put her closer to the teacher and allowed her stepsister into the group to help. Megan’s horse riding instructor is very loud and pronounces her words well. She looks at Megan when she’s instructing and waits for confirmation that she has heard. My advice is to take your emotions out of the situation, but remain assertive. It’s your child’s right to have the same opportunities as any other child their age. If all else fails, keep reminding people until they Megan get it.


NDCS Families • Summer 2015

Samina and Asif are parents to Ethsham (20), Israr (18), Umayr (14) and Sara (11). Umayr is profoundly deaf and Sara is severely deaf – they both wear hearing aids and also have visual impairments. Umayr and Sara have carers; I gave them a month’s trial to make sure they got to know the children’s personalities and how to communicate with them. I always remind people to speak on Umayr’s left side and make eye contact with him. He uses British Sign Language (BSL) and I taught basic signs to the family, but it was a struggle at first. He loves football and is goalkeeper for a partiallysighted and deaf team. He started in a mainstream team and I came to their first practice and signed to him from the sideline which worked fine. Sometimes I have problems with Sara’s school as they hire agency staff who don’t know her. I’ve found it useful to make her a personal passport so that staff can find out what her gestures mean. She has swimming lessons but as she has complex needs her carer and I go with her. We make sure to keep our distance a bit so she feels more independent. As a parent you have to be persistent and not let others tell you what your child needs. It’s also important not to project your own fears onto your child or Umayr mollycoddle them. and Sara

Raena and Ahmad are parents to Ghazi (14) and Abdullah (12). Abdullah has a profound hearing loss and has cochlear implants. In the early days we encouraged our family to learn BSL to communicate with Abdullah and ensure he was included in every aspect of family life. We also had Teachers of the Deaf and some NDCS staff come to explain childhood deafness and what it means for those around Abdullah. This was necessary for the whole family to understand what it meant to have a deaf child, and what changes we had to make to meet his needs. Over the years, explaining to friends and family about Abdullah’s needs has become easier. Tips like getting his attention before speaking to him, reducing background noise and making eye contact make such a difference. We also tell family and friends to make sure subtitles are on when watching TV with Abdullah. NDCS resources have helped to empower family and friends to understand and feel confident about deafness. Remember that you have to understand deafness first, and then you are in a better position to support the people who come into your child’s life. Abdullah

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HOW DO I...?

Louise and Richard are parents to Niamh (4), who is moderately to severely deaf and wears hearing aids. It can be difficult with family and friends because we have to explain Niamh’s behaviour or repeat what she says as she has a slight speech delay. However, I’m teaching our close family some signs to use when Niamh has her hearing aids out, e.g. in the bath. Niamh is currently in a mainstream nursery and will start at the same school after the summer. Our educational audiologist and I have taught them how to manage Niamh’s hearing aids and use the FM system. Niamh attended a small dance class last year. The instructor seemed quite • 0808 800 8880

intimidated at first when I asked her to use the FM system. I gave her a quick five minute lesson on how it works and stayed during the first class to assist her. Then the teacher was fine using it and Niamh gained lots of confidence from being in a new environment without me. I’ve sometimes found that people’s deaf awareness lasts for a few days or weeks and then they fall into old habits. Never be afraid to remind someone of good practice – it’s worth it to make sure your child gets the most from every experience. Niamh

T o find a deaf-friendly activity for your child, take a look at me2.

Your child’s teacher might need guidance about how to support your child. Take a look at uk/supportingachievement. For tips on how to make a passport like Samina has for Sara, visit www.ndcs. Our You and your Family booklet shares experiences, information and tips from parents and siblings of deaf children. Download or order it from

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Next time in Families magazine:

“How do I... make sure my family has access to health information?”

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NDCS Families • Summer 2015


“A really fun way to raise ” s s e n e r a w a deaf Our mobile classroom, the Listening Bus, recently visited St Breock School in Wadebridge, Cornwall, where we met parents Charlotte and Ian who came along with their daughters Lauren and Sophie. Charlotte found out about the Listening Bus during a call to our Freephone Helpline to get resources to increase deaf awareness in school. “My daughter Lauren is four and has recently started school at St Breock Primary. She has a moderate/severe hearing loss in one ear and severe/profound in the other. There are only two deaf children in the school so I was hoping NDCS could give me something to raise awareness and the Helpline told me about the Listening Bus. “I asked the school if they could arrange a visit as this would be a really fun way to raise deaf awareness whilst also giving local deaf children and their families a chance to meet and find out about the technology available to them. “I was pleased to be able to get some information on teaching phonics to deaf children, which I’d been looking for. I’d definitely give the visit 10/10! I really enjoyed it and it was lovely for the children to get the opportunity to come onto the bus together. Thank you so much for visiting us.”

Jo Rodwell, Assistant Head Teacher at St Breock, arranged for deaf children from local schools to come along as well to make it a really successful day. “St Breock School had a very exciting day when the Listening Bus visited. Deaf pupils, their class friends and families attended a number of different workshops and everyone stepped off the bus better informed and with a greater understanding of deafness. The school was also lucky enough to welcome several deaf children from other local schools to share in the experience. “We felt very privileged that the Listening Bus chose our school to visit. It was an incredibly positive day for all concerned and it was very useful to see some of the communication aids that will be available to our deaf pupils as they continue to grow and learn. One of the Listening Bus staff, Jamie, who is deaf himself, was an excellent role model of what it is to be a deaf adult and I’m sure the visit will continue to inspire us all to help ensure our deaf pupils reach their full potential and overcome any barriers to their progress. Thanks for coming to St Breock School, NDCS!” Thank you for having us St Breock! We really enjoyed our day with you and look forward to seeing you all again in the future.



NDCS Families • Summer 2015

T o find out more about the Listening Bus and how you can request a visit to your child’s school, go to

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expert Ask the



Each issue a different professional shares their expert advice and gives information to help you support your child. This time Elaine Shaw, Educational Psychologist working in a local authority to support deaf children, shares her insights. What’s the role of an educational psychologist?

I work for a local authority as part of a team of 12 educational psychologists. We support children and young people within our local authority, some of whom are deaf, from birth to 25 using our knowledge and understanding of psychology. However, not all educational psychologists work in the same way; some work independently of the local authority or directly with schools.

How do you support deaf children?

We work with children with all types of deafness who use different communication methods and hearing technologies. Our work is mainly carried out through schools, with the school staff. We work alongside Teachers of the Deaf, but we take a more indirect role, working with the people around the children and their parents. We do meet children directly to get their views and see them in context. We assess their strengths and weaknesses, and then provide advice for school staff and act as an advocate for the child, socially and emotionally. How we work depends on the needs of the young person and their ability to understand. • 0808 800 8880

We try to ensure they are involved in decision making and agreeing actions.

How would a child get your support?

Request for our involvement mostly comes through nursery, school or college staff, but requests can also come from others working with the child, like paediatricians, speech and language therapists or home visitors who provide early years support for children and their families at home. Children are referred when there is a concern about them, which can be behavioural, learning, speech and language, social or emotional. Children aged 16+ can contact us directly or their parents can, as their advocates.

What does a typical day in your job look like?

I might go to a school, nursery or college, meet and observe children and young people and meet key people around them to have action planning meetings to discuss the next steps for a child or review their progress. Then I go back to the office to write reports and do admin.

I also get involved in training – supporting Teachers of the Deaf to do work around the social and emotional aspects of learning.

Which other professionals do you work with?

We work with Teachers of the Deaf, speech and language therapists, paediatricians, portage home visitors and sometimes audiologists. If a child has significant needs then we might also work with social workers or child and adolescent mental health services (CAMHS).

What are the best and most challenging parts of your job?

The best part is when I see a change in a young person; people have a better understanding of them and I see them coming out of themselves. The most challenging part of my job is seeing parents struggling with their child’s difficulties and trying to help them understand and work through that. Another is managing time – there is never enough to do all you want to do to help.

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

NDCS Families • Summer 2015


Preparing your child for school

Starting school, or moving to secondary school, is an exciting milestone. It can also be a challenging time for children and parents alike, but there’s lots you can do to ease the transition. We’re often asked for advice on preparing a deaf child for starting school. Although the tips below focus on primary school, many are also useful for moving to secondary school. • It’s helpful if children are familiar with the new school environment before starting. Visiting the school is important, but you can also use photos or other visual aids to familiarise them with words/signs for new places, people or concepts such as dining hall, playtime, cloakroom, lining up to go in, and so on. This can help prevent a child feeling anxious because they don’t know what’s happening or where things are. • Knowing what’s coming up is reassuring for all children, whatever their needs. Ask the school to provide a visual timetable you can display at home (most schools should have software for this) and discuss with your child what will happen each day and when. Timetables for September might not be available before the holidays but there’s no harm in asking.

• Help your child learn the words for different emotions and understand how they make them and others feel. This will help them build positive relationships and equip them to express their feelings to the teacher if, for example, they are tired, enjoying a subject or finding something frustrating. • Get your child used to making choices at home, so they feel confident making choices at school, especially when they have to do so quickly, for example in the lunch queue, or choosing between activities in the classroom. • Talk to your child about different situations which might arise and how they might feel, how others involved might feel and what they might do. For example: what if they want to join in a game, they want the same toy/book as another child, or they lose their hearing aid?

Starting secondary school repare your child for moving to a different ✓ Pclassroom for each lesson. Ask for a map of the school and talk through with your child how to get to different places. alk to them about preparing their school bag each ✓ Tevening with all the books they’ll need for the next day. sk the school for a list of topics (and ideally key ✓ Avocabulary) for each subject, so you can familiarise your child with important words before they encounter them in lessons. elp your child to understand the school rules so ✓ Hthey’re confident about what is and isn’t allowed, e.g.

child will ✓ Ibef your travelling independently, do a few practice journeys together so they feel confident about making the journey on their own. If you or your child is concerned about bullying, look at our resources for parents, professionals and young people (you can order them from our Helpline or download them from All schools have an anti-bullying policy and it might be helpful to look at this so that you and your child know what to do if bullying does occur.

use of mobile phones, handing in homework on time.


NDCS Families • Summer 2015

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Parent tips

“Encourage your child that deafness isn’t something to hide. If they didn’t hear or understand something encourage them to ask teachers to repeat or rephrase and ensure teachers are aware too.”

Goes to Playgroup by Julia Donaldson is a fantastic book ✓ “toGoat help prepare a child for nursery/school. Lots of pictures to visually explain what a nursery/school day will entail and the monkey wearing a hearing aid was nice to show my child.”

You’ve done your preparations, now is the school ready for your child? • Has the school already got a copy of our publication for professionals Supporting the Achievement of Deaf Children in Primary Schools? (See box below). All schools should have basic deaf awareness but the booklet helps staff to understand the needs of deaf children, make sure the environment is suitable, any hearing technology is working to its maximum potential, that deaf children feel fully included in all areas of school life and that lessons are fully accessible. • Which member of staff will be responsible for checking your child’s hearing technology and how often? • What additional support will your child receive? How will this be recorded? How often will it be reviewed? The teacher responsible for arranging the additional support is called the SENCO (special educational needs co-ordinator) or, in Scotland, the additional support needs co-ordinator.

Supporting your child’s education this summer • For ideas to help develop your child’s reading, writing and maths skills over the summer, see our booklets Helping your Deaf Child to Read and Write and Helping your Deaf Child to Develop Maths Skills. There are booklets for different age groups. uk/schooleducation • If your child will be taking public exams in the next two years find out which specification/syllabus the school follows for which subject. Talk about the topics so your child is already familiar with the new vocabulary. The examination board websites contain useful information such as exam timetables and grade boundaries. There’s only one board in Scotland (Scottish Qualifications Authority): The five main boards in the other UK countries are: – AQA: – CCEA: – Pearson Edexcel: – OCR: – WJEC: See for more information.

A guide for parents, Starting Primary School, is available online at For parents of children starting secondary school, Starting Secondary School is available at startingsecondary. We also have resources for professionals, which some parents have found useful to give to their child’s school, available at supportingachievement. • 0808 800 8880

• Whatever year group your child is starting in September, ask the school for a list of key vocabulary for each subject, so you can go through it with your child before they come across it in lessons. • If your child is starting college or an apprenticeship or going to university next term, visit leavingschool. education NDCS Families • Summer 2015


Summer sounds on the move It’s summertime and we all like to be out enjoying the warm weather and young people are no exception. Whether they’re on camping trips, in the car, socialising with friends or just chilling out – they love listening to music, playing on portable games devices or watching films and videos on smartphones, tablets, laptops or portable DVD players. Here we give you some suggestions of how they can enjoy their favourite tunes and entertainment when they’re out of the house. Children who don’t use hearing aids Children with a mild or moderate hearing loss, who don’t wear hearing aids or cochlear implants, might be able to use the following products to help them hear their music better:

· Earphones or headphones – why

not look for headphones where you can adjust the volume in each ear?

· Another option might be a

personal listener which can be linked to any entertainment device with a cable. It amplifies the sound and you can listen to it through headphones or earphones.

Children who use hearing aids and cochlear implants There are many products which can help children who wear hearing aids, cochlear implants or a boneanchored hearing aid (BAHA):

· If your child has a radio aid then

why not connect the transmitter to their music player, using a lead? They’ll be able to hear clearly and the sound will go straight to their radio aid receiver/s.

“It’s made a very big difference; it enabled me to hear clearly in assemblies and lessons. You can connect it to the computer so I can do compositions and listen to music during my lessons, so it has really benefited me.” Eloise (18), music student

· Your child could use direct input

leads to connect their hearing aids to their smartphone, MP3 player or entertainment device. One end simply plugs into the output socket on the player and the other ends connect to the hearing aids or cochlear implants. Hearing aids will need a direct input shoe and don’t forget to make sure they’ve been set up by your audiologist to accept direct input.

“The direct input leads meant Josiah could play music and games on his iPod as the sound went directly into his hearing aids. This made him happy and confident to use his iPod alone and be able to hear everything.” Elizabeth, mum to Josiah (8) who is severely deaf

· Children with cochlear implants or

a bone-anchored hearing aid could also use auxiliary input leads from the manufacturer, but these are expensive.

“The BAHA audio adaptor (auxiliary input lead) was fabulous, Alana loved being able to hear the music, enjoy the films and use the interactive screens on the plane.” Annie, mum to Alana (9) who is moderately deaf

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There are many ways your child can enjoy their favourite music and entertainment when out and about this summer.

· Digital

streamers allow you to wirelessly link your child’s hearing technology to any Bluetooth device, so are ideal for use with smartphones, tablets or laptops. They are really easy to use and give stereo sound. You can also add accessories to the streamer which allow it to work with your TV, a landline phone or minimicrophones which are great for socialising. They work with most hearing aids and many cochlear implants and bone-anchored hearing aids.

“I can hear music much clearer than using headphones, thank you for the ComPilot (digital streamer) – it has changed my life.” Omar (17)

Using the ‘T’ programme If your child’s hearing aids or cochlear implants have the ‘T’ programme activated then they will be able to use the following products which all connect to the output socket on any smartphone, tablet, MP3 player or entertainment device. They all produce an output which we cannot hear but which hearing aids or implants, with the ‘T’

programme activated, can pick up and turn into sound which your child can then hear:

· Bluetooth

neckloops are worn around the neck and allow your child to have phone conversations from a smartphone or listen to sound or music from any Bluetooth enabled device such as a smartphone or tablet. These wireless devices are very popular with teenagers, especially those with cochlear implants.

· A neckloop is a wire loop worn

· Inductive earhooks are worn

behind the ear next to the hearing aid and are available as stereo, mono or combined earhook and earphone. They are popular, cheap to buy and come in white or black.

· Silent headphones look just like

small, standard headphones but don’t produce any sound. Instead they produce an output which a hearing aid, set to the ‘T’ programme, can pick up.

To find out more about these products and many others which could help your child, go to uk/technology.

around the neck, usually under clothing. You can get specially designed loops which amplify the output – ideal for entertainment products which might have low volume.

“The earhooks made a big difference; I can hear music on my phone and still hear my family/friends having a conversation. Normal headphones just block out everything around you and you just hear the music.” Rachel (18) who is profoundly deaf

Adam • 0808 800 8880

NDCS Families • Summer 2015


A busy and action-packed summer! Waveney Deaf Children’s Society Ann, mum to Daniel (9)

What sort of activities does your group do? We do a wide range of activities at least four or five times a year and we always ask our members for ideas and suggestions. One summer we held a beach party where we played games and ate fish and chips. We’ve also been to local theme parks, visited the local fire station and had an animal handling visit from Zootastic where the children met and held a variety of creepy crawlies! We’ve also hired our local swimming pool for a family swim event and organised family ten pin bowling.

What’s great about your group? It definitely helps the children grow more confident. For some of them, they’re the only one at their school wearing hearing aids or with problems hearing. My son Daniel is a full BSL user and it’s brilliant for him to meet other children who sign. One of the older girls in the group is the only one who signs in her school too, so it’s really important for them both. She and Daniel are now great friends, always signing away to each other!

Why should others join a local group? It’s great for deaf children to have the opportunity to meet others and try new things. Some of them wouldn’t have the confidence to try these things without knowing there are people in the group who understand how they communicate or can sign any information if they need it. Also, it’s good for parents to meet other parents of deaf children to share tips and experiences. We’re all there to support one another.

North London Deaf Children’s Society Lauren, mum to Bobby (4)

Why did you join your local group? I first got in touch when I was starting to think about going back to work and needed some guidance as to what kind of nurseries to visit and which things I should look for. Esther, the chairperson, was so helpful and gave me some great guidance and support. I joined shortly after, so have been a member for about three years now and haven’t looked back. To have that amount of local support was invaluable to us and we’ve made lots of close friends.

Which events have your group run recently? We’ve just had one of our annual parties which was fantastic, with a great entertainer who made huge bubbles which Bobby loved, lovely food, a great raffle and an auction with great prizes. It was a lovely opportunity to see families chatting and to catch up with some new and old faces. Most of our events are subsidised which hopefully gives all families a chance to attend at least a couple a year and the twice yearly parties are free. We get to do some wonderful activities with the group which we wouldn’t


NDCS Families • Summer 2015

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Three members of different local groups across the country tell us what exciting activities they have planned for the summer and what they love about their groups. necessarily get the opportunity to do because sometimes you need a group of children to do it – and group bookings attract bigger discounts.

What activities do you have planned this summer? We’re discussing our annual summer activity at the moment but previously it’s included ice skating, horse riding and climbing so I’m very excited to see what we come up with this year. We’re also organising a summer event for our younger children and babies at a soft play centre in North London where the children can play while the parents relax and catch up. We also hope to take a few of our families fruit picking, with a picnic included.

Plymouth Deaf Children’s Society Matthew, dad to Izzy (3)

How was your experience of joining your local group? We joined soon after Izzy was born and straight away were welcomed with smiling faces and all round lovely people. They helped us through the initial feelings of having a deaf child, including helping us discuss options around implantation. Seeing other children and adults, who became role models, made the transition in our lives much easier.

How old are the children in your local group? There’s an established youth club for teenagers, which I volunteered to help run. We meet monthly, and take the young people on activities such as paddle boarding, climbing and camping. They also meet weekly for Hip Hop and weekend gym sessions organised by the group. Throughout the summer we’re doing lots of things like a murder mystery train journey, surfing, Segway, sports day; the list goes on… • 0808 800 8880

My wife also set up a youth club for our younger members (0–10 years) and we’ve just run our first trip to an aquarium. We’re also planning pizza-making, clay painting, going to a leisure park, fire-lighting and outdoor cooking. In July we’re holding a family beach day with a barbecue and beach games and possibly a summer camping weekend with surfing.

Why do you like it? Having a deaf child can be a difficult and often frustrating journey, but one that has been helped massively by becoming actively involved in our local group. It’s so lovely being able to watch Izzy getting involved in activities where her hearing loss doesn’t matter, something we didn’t think was going to be as easy when she was first diagnosed. We’re all looking forward to a busy and action-packed summer! To find your nearest local group and how you can get involved, visit findalocalgroup. Email our Local Groups team on if you need any information or support about running a local group or starting one up.

NDCS Families • Summer 2015



Books and products for deaf children – tell us what you think!

Would you or your child l ike to write a review for magaz Families ine? E magaz mail ine@n dcs.or

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





with ACN Children additional

complex needs

El Deafo By Cece Bell Amulet Books, 2014 £6.99 5-10


“El Deafo is about a young girl who has to deal with becoming deaf. She makes up a superhero character based on herself that has special powers. I really liked the comic book style and it made me want to keep reading. The illustrations were also really colourful and well done. The book is for children but I think adults would like it too as I saw my mum reading it. “I really enjoyed reading this book and could understand a lot of what the girl was going through as I wear a hearing aid and have used a radio aid. It was really funny in places but also quite sad when you read how Cece struggles with new challenges. I would recommend this book – it has something for everyone.” Joseph (9), who has a profound Joseph hearing loss and wears boneanchored hearing aids. 40

NDCS Families • Summer 2015

We’ve got five copies of e El Deafo to give away! Th at us ail first five people to em with and e, their child’s name, ag turing their favourite book fea wi a deaf character, ll receive a free copy.

“El Deafo was a very personal project at first. I was trying to make sense of my hearing loss and the ways it has impacted my life. But as I got further into the project, I realised that the book could make a difference in the lives of deaf kids everywhere. Maybe it would even be the first time deaf kids ever saw themselves in a book!” Cece Bell, author

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Glide – Video texting app Developer: Glide Available on: iOS, Android Price: Free 11–13


“Glide is a video messaging app that lets you send videos of up to five minutes. As a deaf BSL user, I found this app useful as you can set it to start recording and you can sign away; there’s no need to hold any buttons down to record. The other thing that is great is the video quality. It’s not high definition, but it is quite clear and certainly good enough to use to sign to other people. “I also like the address book recognition feature. You can set the app to sync with your contacts and it will tell you if you have any contacts in your phone that also have Glide. Glide also has the ability to send instant messages, which is useful when you don’t want to send a video. “I would recommend the app to anyone who is after a free video messenger.” Aaron Aaron, 17, who is profoundly deaf.

Gofindit – natural treasure hunt card game £8.50 Available from The cards represent different sensations and sensory characteristics you can find in nature. 0–4



“This is a great game suitable for the whole family. The small pack of cards is easy to carry around with you when out on a walk and tucks nicely away into its own bag. It’s a great distraction for when the kids start to complain that they’re tired. They quickly engage and suddenly the whole family is competing to find ‘it’ first. “Our three-year-old has only recently been implanted so is in the very early stages of learning vocabulary. The cards are bright, colourful and easy to understand. She quickly understood what each card meant and ran off to find it. “To get the most out of the game, you need to think of where you’re going to walk – find somewhere with trees, flowers, open spaces and lots of mud. You could play it in a more built-up area but may not be able to feel as many things. • 0808 800 8880

There’s also a range of different ways of playing it which means that every time you play it, you’re playing a different game. “My wife works at a pre-school with a range of children with different needs and learning styles. She borrowed the game and played it out in their woods. The children and staff loved the game and want to play it again.” Matt, Vicky, Matt and Vicky, with help from Olivia, 6, Olivia and and Isabella, 3, who is profoundly deaf Isabella and wears cochlear implants. NDCS Families • Summer 2015



What do you think of our information?

Freephone 0808 800 8880 See for details of our opening hours and free interpreter service. Q. We’re going abroad soon. Is there anything I need to know about glue ear and flying? A. Generally children with glue ear don’t experience

problems flying, although sometimes doctors don’t recommend it depending on the current condition of the ears. Particularly in young children, a build up of fluid occurs in the middle ear, which can expand during take-off and, more commonly, landing due to changes in cabin pressure, causing discomfort. The risk is the fluid expands so much the eardrum perforates; therefore the official advice from airlines is that people with glue ear shouldn’t fly. However, research suggests children with glue ear are at no more risk of perforations during flying than children without glue ear. If the eardrum bursts it may be painful and a doctor should prescribe antibiotics, but there is normally no long term damage. If your child already has perforated eardrums, flying is less likely to cause discomfort because any change in pressure evens out across the eardrum and doesn’t depend on their Eustachian tube (which joins the middle ear with the back of the nose and throat) working normally. Discomfort is also less likely if your child has grommets, which allow air to enter the middle ear, keeping pressure on either side of the eardrum equal, reducing stress caused by changes in air pressure. However, children who have a history of frequent ear infections or have had grommets in the past are occasionally at risk of eardrum perforation when flying. Before flying, we strongly recommend seeing your GP who may prescribe some decongestant medication. Eating and drinking during take-off and landing will help open your child’s Eustachian tubes and prevent discomfort. Ear plugs known as ‘EarPlanes’ (available from pharmacies) can help to reduce discomfort from changes in air pressure.


NDCS Families • Summer 2015

You and Your Family “You and Your Family is a guide for families with newly identified deaf children available in print and online, containing valuable information for parents. I found the section on hearing technology particularly important – we knew nothing about cochlear implants until after my daughter was referred for them by the audiologist. It’s good that the guide covers telling the wider family about your child’s deafness and recognises that it could be something you do immediately or when you feel the time is right. It also encourages getting the wider family to spend time with the child as this is the best way for them to understand issues related to deafness. “In the communication section I would have liked a sentence recognising that communicating with a deaf child can be tiring and hard work. It would also have been nice to have a sentence about the number of deaf people in England which would help put things into perspective and make you feel less alone. The section on understanding deafness is important but the audiologist goes through it in detail so it feels like duplication.” Humaira, Miladur, dad to Humaira (8) who is Rumaisa profoundly deaf, Rumaisa (5) and Sara who is moderately deaf, and Sara (4). 0808 800 8880 •


What’s new from NDCS? to T alking f friends a e d r u o y k,

spea af people Some de guage, e sign lan some us . use both me so d an

1 F ive top tips

F ind out r what you es. friend do

Get their attention. Try waving or tapping their shoulder.

Make sure they can see your mouth. Face them when you talk.


Speak clearly. too loudly. Not too slowly or

Use your hands. Point at what you’re talking about.


ur ting on yo ing. Try tex ssage down. Keep try me writing a phone or


NDCS is a registered charity

in England and Wales no.

1016532 and in Scotland


no. SC040779

Talking to your Deaf Friends What type of information is it? A postcard and poster, available at Who’s it for? Deaf and hearing children and young people who may be unsure how to communicate with deaf peers. What’s it about? Five tips are given

for how to communicate with deaf friends. You might also like: Our Communicating with Deaf Children flyer for adults.

A parent’s guide to Education, Health and Care needs assessments and Education, Health and Care (EHC) plans (England) 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 children and young people in England. What’s it about? It explains about the EHC needs assessment process, EHC plans and converting existing statements into EHC plans. You might also like: Our SEN reform webpage

Supporting your child with filling in the How your disability affects you questionnaire (PIP2)

My deafness didn’t stop me What type of information is it? A video playlist, available on the NDCS YouTube channel. Who’s it for? Deaf young people and their parents/carers. What’s it about? We meet deaf people from all over the UK who are living their dreams, whatever they may be. You might also like: Our web section about the options for deaf young people after leaving school

Help make our information even better! There are loads of ways you can get involved and help us improve our information. You could become a reviewer, take part in a survey or a focus group, share your story or simply tell us what information you need. Email to get involved.

We need you! • 0808 800 8880

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 children and young people. What’s it about? It gives information about how you can help your child fill in the How your Disability Affects you questionnaire (PIP2). You might also like: Our updated financial support website section for deaf children and young people 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 (voice and text) or email

NDCS Families • Summer 2015


? n o s ’ t a Wh

ents coming v e E E R F c ti s ta n fa We have lots of few of them. a t s ju f o r te s ta a up, and here’s Youth events

Family events

Why book your child onto an NDCS youth event?

Information day: Introduction to your child’s deafness

Our events for 8–18 year-olds provide a safe and inclusive environment where deaf children and young people can try something new, meet other deaf children, and gain confidence and self-esteem. The emphasis is firmly on having fun and building relationships.

Our events include: Weekend events for 11–15 year-olds Our specialist sports, outdoor and creative arts events give deaf young people an opportunity to take part in the activities they love the most or have always wanted to try. Day events for 8–16 year-olds Our one-day events are a great opportunity to meet other deaf children who live locally. We offer lots of different activities, from dance and drama to animation, led by deaf and hearing artists. Events for 16–18 year olds We have a special programme of events designed for deaf young people aged 16 to 18. These events aim to increase confidence, develop independence and prepare young people for the future. Keep checking our website for new events – we’ll be launching our autumn/winter programme soon! Please note we have an applications process for all our events for deaf children and young people, so remember to check the application deadlines. More information on all our events and the application process can be found at

This one-day event is for families with a child over the age of two years who has been identified as deaf in the last 12–18 months. Families will have an opportunity to meet other families and share experiences and knowledge. Topics covered during the day include an introduction to audiology, communication and technology, and opportunities to meet deaf adults who will share their experiences. 20 June, Reading, England 11 July, Lincoln, England 25 July, Bedfordshire, England 26 September, TBC, Wales 26 September, Manchester, England 24 October, Birmingham, England

Information day: Getting your deaf child ready for school – Education matters This information day is an opportunity for families with a deaf child aged two-and-a-half to four years to come together to learn more about supporting your child at school, how to enforce you and your child’s rights and to share tips and experiences with other families with deaf children. 20 June, Newcastle, England 11 July, Basingstoke, England 18 July, Birmingham, England 19 September, Basildon, England 14 November, Taunton, England

Have your say! Stirling, Scotland

“Thank you for giving my daughter and her new friends a wonderful week of activities and memories.” Parent

“I was worried about being away from home and felt shy when I arrived but now I am fine.” Young person

The Have your say! family residential events are a great opportunity to take part in fun activities, meet other families of deaf children and shape the future of NDCS youth events in Scotland. Deaf children aged 8–12 and their families 27–28 July 2015 Deaf young people aged 13–16 and their families 29–30 July 2015

To book a place on any of our events, or for more details, visit 0808 800 8880 •


On a roll! Playing team sports can be a great way to make new friends and have fun. 13-year-old Reuben tells us how roller hockey club, the Chippy Trixsters, supported his communication needs and why he’s now on his way to the European championships!

Reuben, who is profoundly deaf, says: “I first heard about roller hockey because my friends were doing it. They encouraged me to give it a try, and I’ve been going for the last four years. The team I play for is called the Chippy Trixsters. Chippy comes from the town’s name Chipping Norton – locals all say “Chippy” – and the players are the Trixsters. “The best bit about roller hockey is the enjoyment I get – the speed, the goals, and the team that I play with. I just love it. There are some disadvantages, such as difficulty hearing other players and the coaches. Using the Roger radio aid has helped me overcome this – and to hear the coaches to my full potential. My team members have also helped by minimising the words that they use. For example, they say ‘Pass’, rather than ‘Reuben, pass the ball’. “This is my last year in the peewee roller hockey team and we achieved first place in our league. We then won the national tournament, becoming ‘Britain’s best peewee roller hockey team’. In August we’ll be flying to Switzerland to compete in the European championship. “I’ll definitely carry on with roller hockey as it’s my primary form of exercise, and a really fun thing to do • 0808 800 8880

in my own time. In the future I hope to do well in my GCSEs so that I can pursue my dream job of becoming a programmer. “Roller hockey is one of many good sports for deaf people to try. Although it may be a steep, thrill-packed learning curve it is exhilaratingly fun!”

Emma, Reuben’s mum, says:

“Prior to playing roller hockey, Reuben lacked self-confidence and his selfesteem was very low because of his deafness. He has slowly grown in confidence when meeting new people, and best of all he is a strong, more determined person – all from learning to play roller hockey and being a team player.

“At first I was worried about my son playing a full contact sport, but once I watched the team play, I felt happy and relaxed. I have even tried out the sport myself, and have trained to become a referee and a timekeeper. “The NDCS Me2 project has been a brilliant support in helping coaches and managers learn how to communicate with deaf children – we now have four deaf players. Borrowing equipment from NDCS has also been a lifeline – we know now what is best and we are sourcing funding to support our three deaf radio aid users.”

If your local sports club needs support and training on how to involve deaf children, or you’d like to find a deaf-friendly club in your area visit

NDCS Families • Summer 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 software programmer for an IT company because… “I like the fantastic technology, which allows me to do my job effectively. “I was diagnosed with bilateral sensori-neural deafness at four years old. My hearing has deteriorated and I’m now severely to profoundly deaf. “Work was difficult in the early days, but I was fortunate to have an older member of staff take me under his wing. He fought my corner and gave me confidence. Like many deaf adults, I have a few stories to tell. At my first job interview, I misheard the name of the person I was meeting and caused confusion asking for someone What does your child who didn’t exist! want to be when they “I wear hearing aids, and two grow up? electronic notetakers support me For more information on at quarterly company meetings. I careers, check out our section communicate with customers and about life after colleagues via email and Skype. leaving school at “I’ve been volunteering for NDCS since 2006, sharing my experiences at leavingschool. family weekends. I take a great sense of achievement and pride from contributing.” Martyn Brown

I’m a freelance artist because… “The arts are my passion. I work as a freelance illustrator, animator, theatre director and script writer. A lot of my work is informed by my experiences as a deaf person and the communication barriers I face. “I wear hearing aids and I’m a British Sign Language (BSL) user. I always wanted to be an artist and studied graphic design at college for two years, followed by a three year foundation degree in illustration and animation. I need a BSL interpreter or communication support worker to help me communicate and translate my BSL.


NDCS Families • Summer 2015


I’m a Sport and Exercise Science student because… “I love competing and pushing my body to its limits. As part of my degree I work with elite athletes in state of the art facilities. I’m learning how to use science to improve sporting performance, prevent injury and complete research. “I’m severely deaf in both ears and wear hearing aids. I’ve always been in mainstream education – this was challenging and I had to work incredibly hard to make up for information I missed. “I have an interpreter for lectures, but playing sport with hearing teammates can be very difficult. I miss a lot of what the coach says and never hear when my teammates are trying to communicate with me; despite this I was named captain of the university football team this season for my leadership qualities. “I achieved first class honours for my first year at university. I have also won the English Deaf Football League and was selected for the Great Britain Deaf U23 squad.” Fil Kamps

“I’ve been nominated for best animation at a few deaf film festivals for my children’s films, Rory’s Teeth, Rory Gets Fit and Boris Bolt (based on the children’s books I created). I’m hoping my new animation Oka will be shown at film festivals and I’ve just made a new live action short film for the British Sign Language Broadcasting Trust (BSLBT).” Paul Miller

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

T: 01937 842144 F: 01937 541471 E: W:

Where every voice is heard and celebrated

We all have one thing in commonâ&#x20AC;Ś


TV Production Manager


Global Research Policy Manager


Stone Carver & Letter Cutter

â&#x20AC;Ś Mary Hare School ! For more information or to arrange an individual visit, please contact Debbie Benson: ( or 01635 244215) or visit our website

Securing the future of deaf children and young people

Families magazine, issue 37  

Families magazine summer 2015 issue 37 Welcome to the summer 2015 issue of Families, our quarterly membership magazine for families of deaf...

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