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Winter 2016 • Issue 43

Expanding Ivy’s world “Every decision we’ve made has been to open up as many options as possible for Ivy.”

NEW SPECIALIST PROVISION OPEN With the closure of some specialist deaf residential schools last year, not all deaf children have access to the education and care they require. Hamilton Lodge has now opened our new provision. Our new specialist provision is tailored to meet the curriculum and care needs of those pupils. It is fully open with both a specially adapted residential house and a specialist team to ensure that these pupils have full access to a broad and balanced curriculum at Hamilton Lodge as well as a comprehensive care package. All the pupils in the new unit will have an in-depth educational and personal care package compiled in liaison with parent/carers, education professionals and care staff:

Our aim is to enable pupils to enjoy all aspects of the wider life of the school and to develop communication skills to support interaction with all pupils and staff. We also aim to develop all the necessary social and educational skills to enable them to be able to make appropriate ‘life choices’ when the transition from school is planned. To book a visit or discuss your child’s needs with us please contact me. David Couch, Principal 01273 682362

• This will reflect the full range of individual pupil abilities and strengths and will form the basis for the future planning of appropriate targets both educational and care related. • It will incorporate communication strategies which are of vital importance in the development of these targets. • Each pupil will have a detailed individualised communication profile which will have shared targets across school and care departments. • A keyworker system is in place to oversee this process and ensure regular contact with parents of pupils and students.



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.

Contents Winter 2016 • Issue 43

National Deaf Children’s Society 4 News & views 7 Comment 8 Campaigning 10 Fundraising

28 Helping your child to 26

cope with tiredness

Raising the Bar even higher

36 The T programme

Hello... This winter is an exciting time here at the National Deaf Children’s Society. We’re delighted to launch our very own children’s book, Daisy and Ted’s Awesome Adventures, a story of friendship, adventure and deaf awareness – an ideal Christmas present idea for four to seven year olds. For more information see page 40 or to buy a copy. We’re also working on a new-look version of this magazine to bring to you in the spring. In response to your feedback from our readers’ survey earlier in 2016, we’ll be featuring some exciting new articles, as well as keeping all of your favourites. A massive thank you to everyone who completed the survey – we were overwhelmed by the response. As the new year approaches, thoughts turn to resolutions. Why not make your resolution for 2017 to find out more about your deaf child’s rights? Like parents Melissa and Mark who exercised their right to delay son Alfie’s school start by a year as it was the right decision for him (page 20). You can also find out more about your rights to appeal a school placement on page 34. Have a very happy Christmas and all the best for 2017!

Karen Harlow, Editor email:

NDCS depends almost entirely on generous support from individuals and organisations. The public is responsible for 95% of our income, and without this we wouldn’t be able to support families of deaf children and young people. See pages 10–11 for more information on supporting NDCS. Publisher: Emma Aldridge • Editor: Karen Harlow • Designer: Jenny Heylin-Smith • Production Manager: Phillip Barros • Distribution: Maria Piazza Advertising sales: Anne Marie Fox, Landmark Publishing Services, 7 Adam Street, London WC2N 6AA. Tel: 020 7520 9474. Email: 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. • 0808 800 8880

Children, young people and families

13 Share and support 15 Our superstar 17 Early years COVER Making Ivy’s world as big as possible 20 Primary years Born too soon 22 Transition years When glue ear doesn’t disappear 24 Young people Skills for life 26 Raising the Bar even higher 28 How do I...? my child cope with tiredness?

Information, services and events 30 Roadshow 33 Ask the expert 34 The school year 36 Technology 38 Local groups 40 Reviews 42 Our resources 44 What’s on?

Role models

46 When I’m a grown-up Get in touch NDCS Families, Ground Floor South, Castle House, 37–45 Paul Street, London EC2A 4LS Telephone: 020 7490 8656 (voice & text) Fax: 020 7251 5020 Email: Website: Freephone Helpline: 0808 800 8880 (v&t) NDCS Families • Winter 2016


news & views

Follow NDCS on Twitter:

NDCS on Facebook:

Deaf tip awarenessssary

nece Cut down un as noise, such background , radio traffic or the indows and by closing w rning doors and tu . machines off

Calendar girls who dare Girls Who Dare, part of Woolston Signing Choir, raised an amazing £1,270 from a signed performance of songs from the musical of Calendar Girls and have donated half to us. Helen Andrews set up Woolston Signing Choir after working with a deaf pupil for many years. She was inspired to put on the performance after watching the musical. Two of the original Calendar Girls, Angela Baker and Christine Clancy, attended the event. Can you hold a signing performance to raise money for us? Whether it’s one song or an entire performance, you can hold a collection or donate proceeds from ticket sales. Visit www.ndcs. for more information.

Calling young authors and artists in Northern Ireland! We’re delighted to announce the launch of our Young Authors and Artists Competition 2017 in Northern Ireland with the theme of ‘crawling through the jungle’. This annual competition is a platform for deaf children aged four to 18 years to express themselves through the arts. It celebrates the creative achievements of deaf children and young people in Northern Ireland. The deadline for entries is 20 January 2017 with the prize-giving taking place in March 2017. The Arts g le h the ju n g u o r and Disability Forum Northern Ireland th Craw ling will be exhibiting all winning entries in their gallery in October 2017. Registration forms are available from or contact the Belfast office on 028 9031 3170. Young A uth ors and Ar



Enter our annual Young Authors and Artists competition for deaf* children and young people Ireland. aged 4–18 in Northern


stories? Do you like art or writing g through the Jungle. This year’s theme is Crawlin s swinging from the Draw or write about monkey elephants stomping, parrots trees, snakes slithering, – or whatever you like! squawking, lions roaring 20 January 2017 Competition deadline: page. > Find out more over the

in England and Wales no. NDCS is a registered charity and in Scotland no. SC040779.


Sunnyside sports success

Sunnyside Academy hosted their annual deaf sports event in July. 120 pupils attended from across the North East and North Yorkshire, taking part in activities such as rock climbing, tennis, wheelchair basketball, football hosted by Sunderland Deaf AFC and an army assault course. The event was such a success it was awarded ‘innovative project of the year’ at the Middlesbrough Sports Awards.

13/09/2016 16:03

JR1092 Young Authors


and Artists

1 2017 Competition Flyer.indd

NDCS Families • Winter 2016

0808 800 8880 •


> Born too soon

> Lingering glue ear

Melissa and Mark applied to delay son Alfie’s school start by a year. page

Cody (12) still hasn’t grown out of glue ear…


“This weekend has been invaluable. We’d love to attend events like this in the future. We’re leaving this event today feeling extremely positive.” Sue, a parent who attended one of our weekends for families with a deaf child aged 0–2, in Wrexham. See events to find out what’s on in your area.

Mike’s Himalayas fundraising challenge

Mike Hancock from Scotland has raised over £7,000 by battling the elements in a 500 kilometre mountain bike race through the Himalayas. This challenge took him through snow-covered passes at altitudes of 16,000 feet and temperatures ranging from -20 to +30 degrees. Mike’s niece Emily, who was diagnosed with a progressive hearing loss aged two and eventually lost her hearing completely, had surgery for cochlear implants six years ago. All the money Mike has raised will help us run our vital support services in Scotland. You can still support him by making a donation at www.virginmoneygiving. Emily com/MikeHancock. • 0808 800 8880

> Skills for life



Find out how the deaf young people who attended our 16+ life skills transition events got on. page


Getting involved with Parent Carer forums A Parent Carer forum is a group of parents and carers of children with special educational needs and disabilities who work with local service providers to make sure the services they plan and deliver meet the needs of disabled children and their families. The forums are keen to involve more parents and carers of deaf children. Polly is chair of her local deaf children’s society and recently got involved with her local forum. She says: “I signed up via their website, which is clear and informative. My experience was very positive – the forum was well organised by knowledgeable parents. There’s strength in numbers as there are lots of parents involved, all in a similar position. I’d attend again if I wanted to raise an issue with a wider group, but it would be good to have more parents of deaf children involved.” To find out more see parent-carer-participation/what-is-a-parent-carer-forum/ or call our Freephone Helpline. NDCS Families • Winter 2016


Become an expert parent Have you struggled to get the right support for your child? Do you think parents need more guidance to understand the different systems that can support their deaf children? Would you like to meet other parents to share experiences? Together with the Council for Disabled Children and parents of deaf children we’ve developed a programme of workshops which can help you understand your child’s rights and the systems in place to support you. These events are now available across England – please check to find one near you or email for further information.

New law for learners with additional needs in Wales We met with the Minister for Lifelong Learning to outline our views on a new law in Wales that will change the way support is planned for learners with additional needs. The new law is one of the Welsh Government’s priorities. While we’re happy with some parts of the law, we also have serious reservations about how it will affect deaf children and young people. Check out our webpage for updates and opportunities to help us campaign around the new law:


sid Da y av enti and ail al ab pla le ce


Supporting students to be resilient, independent and skilled, enabling them to achieve their future aspirations

OFST OUT E for so STANDIN D G cial c are

OFSTED ADED 2014 GR We are a specialist college who take students from all over the country with a specific communication need including: Deafness/Hearing Impairment - Autistic Spectrum Condition - Learning Disabilities and Difficulties. Our aim is to support students to gain employment and maximise personal and social development through our unique approach for individual learning needs.

For further information, please contact: OUTSTANDING for residential social care OFSTED 2012


Leger Way, Doncaster DN2 6AY

NDCS Families • Winter 2016

01302 386720 The Communication Specialist College is owned and operated by Doncaster Deaf Trust


Registered in England No. 4105045 Registered Chaity No. 1088060

0808 800 8880 •


Have a deaf-friendly Christmas Family and friends may need advice to ensure everyone can join in the festivities. Having grown up deaf, and from talking to other families, I know that the holiday season can be challenging for deaf children and young people. Imagine the frustration of meeting Father Christmas and trying to lip-read through his beard! A combination of busy, noisy celebrations and visitors who aren’t very deaf aware can leave deaf children feeling confused, left out and overwhelmed. But there are lots of tips you can give friends and family on how to include your deaf child in the festivities. Family dinners are an important way to spend time together, but can make communication more complicated. It’s very hard to lip-read someone who’s got a mouthful of food! It’s worth just reminding your guests that a deaf child may choose to eat all their food and then get involved in conversation. When they do join in, people can let them know what the conversation topic

is so that they can follow more easily. Candles and fairy lights help to create a holiday atmosphere – and if you use them to decorate the dinner table, they have the added bonus of boosting the lighting in the room so that everyone can see clearly to lip-read or sign. Festive music can also set the mood but you may need to turn it off during mealtimes and games. There are many games everyone can play which don’t rely too heavily on listening, such as visual quizzes or board games. And for loved ones in far-flung places, Skype or FaceTime might be a better idea than a phone call. Take a look at for more top tips, and keep an eye on if you’d like to learn some festive British Sign Language. Enjoy the holidays and best wishes for 2017.

Susan Daniels OBE Chief Executive

Learn, grow and flourish

We’ve moved to an exciting new location A new state of the art building shared with a mainstream primary school

Frank Barnes School for Deaf Children 4 Wollstonecraft Street London N1C 4BT

Tel: 020 7391 7040 SMS: 07970 626 197 Fax: 020 7391 7048 • 0808 800 8880

Frank Barnes School for Deaf Children

NDCS Families • Winter 2016


An Ofsted inspector calls

Ofsted will be inspecting special educational needs services across England – make sure you’re ready to have your say. Ofsted and the Care Quality Commission have started inspecting special educational needs and disability services across England. These inspections are the first of their kind across health, education and social care and we’re encouraging you to have your say on services. The inspections began in May 2016 and over the next five years, every area in England will receive a visit from the inspection team. The inspectors will talk to children and young people with a range of special educational needs including deafness, blindness and autism. They will also speak to parents and professionals from across health, education and social services to identify what each council does well and which areas could be developed. For parents, this could be via a webinar with Ofsted. A webinar is an online discussion forum. Each inspection lasts a week with five working days’ notice given to parents. We’ve been working with families in the areas inspected so far to make sure feedback from families and deaf young people is taken into account. Following each inspection, a report letter is written detailing the strengths and weaknesses of each area, including identifying needs among children, assessing those needs, providing 8

NDCS Families • Winter 2016

support and improving outcomes. The reports cover a large range of disabilities and sectors so it’s crucial that we find ways to highlight deafness and the specific barriers that deaf children face.

Top tips Wondering what to do if you find out your area is being inspected? We’ve put together some tips to get you started. •

Head to takeaction and tell us that it’s happening so we can let other parents and deaf young people know.

Take a look at our factsheet Help Improve Support for Deaf Children in Your Area for questions to think about if your local area gets inspected. You can download this from inspect. We also have information on Ofsted for young people at

Talk to the inspectors – this may be through a webinar, survey or meeting but make sure you have the chance to get your views across.

This has been achieved in Hertfordshire and in Enfield. When Ofsted inspected Enfield, we were already working with parents because the retirement of two Teachers of the Deaf had resulted in longer waiting times for appointments. Parents were keen to engage with the Ofsted inspection webinar. After participating in the webinar one parent commented, “It was nice to be part of a forum and let our feelings be known about the state of SEN [special educational needs] services in the borough”. As a result of the great engagement from parents, the issues we raised were listed in the report as points for the council to improve on. This will help ongoing campaigning and gives us an opportunity to hold the council to account. We hope that with your help we can continue to highlight the barriers affecting deaf children and campaign for the best services nationally. So look out for an inspection in your area and make sure you and your family take part.

To find out more about our campaigns see 0808 800 8880 •


Early years success in Scottish Parliament In September we went to Scottish Parliament to help raise awareness of the needs of deaf children and their families in the early years. The event marked the launch of our new early years project, Everyone Together. The project, which has been funded by Big Lottery Fund Scotland, will allow us to help over 350 families across Scotland through Family Sign Language courses, parenting courses and other outreach work. At parliament we also launched our report, Getting It Right From the Start: Improving early years support for deaf children in Scotland. The report highlights the gaps that still exist in early years support for deaf children and their families. With a new Scottish Parliament freshly elected in May, our aim was to raise the profile of childhood deafness, especially among new members who might not know much about it or have heard about us. We highlighted the gaps in support to MSPs and put forward our suggestions to bring about real change. Our Roadshow bus was parked outside the parliament for the day and MSPs could climb aboard to learn more about what it’s like for a deaf child in their early years and get involved in fun tasters of our Family Sign Language course. Young Campaigners Holly (19), who is severely to profoundly deaf, and Raysa (22), who is profoundly deaf, joined us at our exhibition stall and did a fantastic job of telling the MSPs about their own experiences growing up as deaf young people in Scotland. We spoke with 65 MSPs over three days, more than half of the parliament, including the First Minister Nicola Sturgeon, Cabinet Secretary for Education and Skills John Swinney and the Early Years and Childcare Minister Mark McDonald. We also formed new relationships with key MSPs who are keen to work with us in the new Scottish Parliament term. Holly opened our parliamentary evening reception, which was attended by MSPs, professionals, and children, young people and their families. John Swinney MSP gave the keynote speech in which he committed to using the Scottish Government’s Getting It Right For Every Child approach to drive improvements in support and policy for deaf children. We’ll now be following up with key decision makers to drive change in the early years for deaf children and their families in Scotland. Our full report is available at A massive thank you to everyone who attended and all the staff and young people involved in making this event a success.

For more information contact • 0808 800 8880

NDCS Families • Winter 2016


Best foot forward Tracey, mum to Ruby (7) who has a unilateral hearing loss, ran the London Marathon for us last year and raised over £2,335.

Why did you choose to run for the National Deaf Children’s Society? In 2013, six days before her third birthday, our daughter Ruby was finally diagnosed with unilateral hearing loss on her left side. Our consultant advised us to contact the National Deaf Children’s Society for support and advice. Over the years this has been invaluable. As I’m a keen runner and previously ran a marathon 12 years ago, I thought it only natural to run one last marathon for the National Deaf Children’s Society to give a little something back in return for all the support they’ve offered us as a family over the last few years. How did you hit your fundraising target? Meeting my fundraising target was as much of a commitment as training for this event so I started planning my fundraising early. I decided I needed to find something slightly different and quirky. I bought a pom-pom book and created Christmas pudding pom-poms to sell for tree decorations and then at Easter I made bunnies and chicks. I also made a Christmas wreath that I raffled. The pom-poms alone made almost £1,000 of my fundraising total. I used social media to promote them, asking people to make donations to the charity. I was also fortunate enough to have friends who took pom-poms to work and asked colleagues to make donations. I also contacted Cardiff railway station and asked to do a bucket collection outside the station. I roped in a few friends and Ruby and we raised £500 on the day thanks to the generosity of the general public. What was your highlight? One of the biggest highlights was getting the opportunity to meet some genuinely nice people. The staff members from the National Deaf Children’s Society were always there to offer their support and suggestions for fundraising. The night before the London Marathon we were invited for a pasta party with runners and their families. It was a great opportunity to meet the other runners and hear their stories and personal reasons for running for the National Deaf Children’s Society. 10

NDCS Families • Winter 2016

How did you train? Training for the London Marathon takes massive commitment. It means going out in the best and worst weather conditions. I remember running in snow, hail, wind, rain and occasional sunshine. Training is a slow, steady process. During the tough times I remembered the reasons why I was running and always imagined how it would feel once I had crossed that finish line. I knew that my efforts during the tough times were going to make a massive difference to families and young people’s lives. Running the London Marathon for the National Deaf Children’s Society wasn’t just a race for me; it was a massive achievement knowing I was running for an amazing charity. What advice would you give to anybody considering running the marathon? My advice for anyone considering running for the National Deaf Children’s Society is do it. They’re a fantastic charity and they’re doing amazing work. You’ll be making a massive difference to deaf children and their families. I’m looking forward to taking part in further challenges for the National Deaf Children’s Society.

For more amazing fundraising tips contact the Events team on or 020 7014 1135. 0808 800 8880 •


for deaf children

Were you lucky enough to get a ballot place in the London Marathon 2017? If you have a ballot place why not use it to raise money for us? Even if you have your own place at the marathon you’ll still get all the perks of a charity place runner: • free running vest • access to professional fundraising advice • member of our very own private Team NDCS Facebook page • pasta party the night before the race • invite for you and your family to our post-race reception “I knew that my • free massages after the race. efforts during the

tough times were going to make a massive difference to families and young people’s lives.”

Tips to help you reach your fundraising target Sponsored leg wax – set a fundraising target (for example £300) and when you reach it you get your legs waxed publicly. This works well with work colleagues! Pub quiz – local pubs will often let you hold a quiz for charity as they want the custom. Round people up into teams, asking each person for a £10 donation to play. Raffles are always popular too. Donation cards – business card printing companies sometimes offer basic cards for little or no cost. Why not create some with details of your online fundraising page and why you’re fundraising for us, then you can ask people to give while you’re out and about. Tell us about your ballot place and get the VIP treatment! Email our Events team on • 0808 800 8880

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Recent discussions:

Share and support

Loneliness Hearing aids Headphones

Many families with deaf children use Facebook and Parent Place, our online discussion forum, to share experiences and advice. Do you want to share your ideas, opinions and concerns with other families with deaf children? Have your say at and

Topic: waterproof hearing aids Has anyone tried the Siemens Aquaris hearing aids? I’m thinking of buying them for my son because he loves swimming. 

<<<Sam Woodcock>>>

My daughter loves to swim too but I’m always concerned over her safety. Once there was an emergency siren to get everyone out of the pool because a teenager was drowning – she didn’t hear it at all.  <<<Facebook user>>> They have been hit and miss for my daughter. I love that she can wear them in the water, but she doesn’t always like the feeling of them while she’s swimming. We have a spare pair of dry earmoulds as water can get into the tubing and block sounds. <<<Facebook user>>>  Our local hospital hires them out – maybe you could ask your hospital if you could test them?  <<<Facebook user>>>

For more information have a look at our webpage about deaf children and swimming at swimmingguide. • 0808 800 8880

We tested them with our audiology department but they weren’t suitable for our son’s level of hearing loss. We’re hoping a company will be able to make some for children with a severe/profound hearing loss. <<<Facebook user>>>  My daughter uses them for her swimming lessons and they have been life-changing. She can now chat to kids in the pool and enjoy days at the beach or in the paddling pool. They are expensive – around £1,600 for two but for us totally worth it. We got them privately as our local team wanted nothing to do with it.  <<<Facebook user>>> I’ve been told that the Aquaris is being phased out this year because there isn’t enough demand. I didn’t even know there were waterproof hearing aids until a month ago. Should we be impressing upon Siemens or Phonak that there is demand for these aids and they should concentrate more efforts in this area? <<<Facebook user>>>  I’ve found out that the Phonak Sky V (the NHS model) has the same IP68 rating as the Siemens Aquaris. That means they can be submerged one metre underwater for an hour. We are waiting to hear whether our audiology department will buy them for us or if we have to go private.   <<<Sam Woodcock>>>

NDCS Families • Winter 2016


Registered Charity No. 1124523

Specialist education and care tailored to every individual Day and residential School and College for Deaf students aged 4-24 • Bi-lingual learning environment • In-house therapies team • Delivering confidence and independence

“At the Academy his life changed from black and white to glorious technicolour” a parent

For more information or to book a bespoke visit contact: Admissions Administrator, 50 Topsham Road, Exeter, EX2 4NF 01392 267029

Text: 07624 808738


Every day deaf children and young people prove that deafness shouldn’t be a barrier to enjoying life. Read on for some of the amazing things your children have done to make you proud. Lewis has only recently been diagnosed as deaf and has just moved into the senior group at his Taekwondo school. He overcame a massive hurdle to take his grading exam in a sports hall full of people and in front of a panel of five judges. Steph, mum to Lewis (9) who is moderately deaf.

Despite her hearing loss and having had major spinal surgery before her teenage years, Chloe has always continued to work hard at school. She achieved an A* in psychology and received an unconditional offer from Hull University. Sharon, mum to Chloe (19) who is moderate to severely deaf. Noah is a superstar because he has a passion for squash and he took the junior title at the World Deaf Squash Championships in South Africa in October 2016. He is also the national deaf squash ambassador for England and is a qualified coach, and he’s currently looking for deaf children to teach. Lisa, mum to Noah (17) who is moderately deaf. • 0808 800 8880

It’s been over a year since Santiago started wearing hearing aids and he’s been very brave, wearing them at school and getting a great report for finishing Year 1. A year ago he couldn’t understand phonics but with the help of his hearing aids he has advanced in his reading and writing. Natalie, mum to Santiago (6) who has moderate hearing loss in one ear and moderate to profound hearing loss in the other.

We’re so proud of how Miriam’s settled into mainstream secondary school. She worked so hard in Year 7, getting ‘excellent’ for effort on her report for all her subjects and achieving well. She has made new friends and is in the top set for maths! Harvey and Denise, parents to Miriam (12) who is moderately deaf.

Gwen was born with cholesteatoma and was fitted with a bone-anchored hearing aid at age three. When she started university she joined the debating society and her success both as a speaker and a judge culminated in her being selected to speak at the European Universities Debating Championships 2016. She also graduated with a BSc in physics. Irene and Chris, parents to Gwen (22) who is moderately deaf.

Grace has vestibular dysfunction (problems with balance) and hypermobility and she normally wears specialist boots to assist her mobility. Grace’s sister goes to ballet and Grace began asking to go as well. We were concerned as to how she would cope but Grace absolutely adores dancing and was nominated for a Dance Company Challenge Award for her perseverance and effort. Louise, mum to Grace (4) who is profoundly deaf in one ear and mild to moderately deaf in the other.

Do you know a deaf child who’s a superstar? Parents, extended family members or teachers/professionals can all nominate by emailing No matter what your child’s level of hearing loss or however big or small the achievement, we think it’s worth celebrating! 15

Helping your child hear more As a parent, your child being able to hear you and everyone else is of paramount importance. RogerTM takes a child’s hearing to a whole new level, letting them connect with the people and the world around them. A child’s hearing aid provides a listening range of up to 2metres but anything after this and they may struggle to hear. RogerTM technology has been proven to help children hear better in noisy situations or over distance, whilst being simple and easy to use. The technology helps a child to maximise speech learning & development, build confidence, feel safe and develop friendships. It also helps a child hear more clearly when playing outdoors or enjoying sports and hobbies, eating meals at home or in a noisy restaurant, watching TV or using their mobile phone. Phonak is working with many partners to support parents with the above and offer them information needed to overcome these challenges. To order ‘Accessories - A Parents Guide’ booklet, simply speak to your local audiologists or the Phonak on 01925 623 600 or email


Making Ivy’s world as

big as possible

When Ivy started nursery it was a proud moment for parents Marnie and Daniel. They’ve travelled a long road to provide communication options for their profoundly deaf daughter – who now has a cochlear implant and uses British Sign Language (BSL). • 0808 800 8880


hen Ivy, now nearly three, was identified as profoundly deaf at nine months old, parents Marnie and Daniel knew little about the road ahead. “It was like everything else stopped,” says Marnie, thinking back to the diagnosis. But by then they were expecting the news since Ivy wasn’t responding to even very loud noises. “For me, the realisation came when we walked past a jackhammer in the street and for Daniel it was at a music festival,” says Marnie. NDCS Families • Winter 2016


Prepared for the diagnosis when it came, Marnie and Daniel had started researching deafness and what it might mean for their family. “We’d been reading a lot, and I’d spoken to a colleague whose academic research had focused on communication methods for deaf children. She suggested we start signing, and we knew it was something we needed to investigate,” says Marnie. Unsure what the future would look like for Ivy yet determined to give her access to communication, Marnie and Daniel threw themselves into learning BSL. “We realised it could become her first language, and that we had to do it,” says Marnie. The decision to sign was the first of many big decisions to come for the family when they realised how much change lay ahead for their daughter to have access to communication options. Then living in a remote village in the Swiss Alps, access to services – especially signing – and the Deaf community was limited. “We knew we had to give Ivy language, and decided that we would best be able to support her with BSL,” recalls Marnie. So the family began a long journey to create a new life in the UK, where Ivy could have much greater access to support. “It was all so overwhelming,” says Daniel, recalling the family’s visits to the UK before the move to attend weekends with other families with a deaf child. “The National Deaf Children’s Society weekend and a sign language weekend (organised by Genie Networks) we attended were hugely influential,” he says. “We met deaf adults who used BSL as their first language, and realised what it would mean for us – we’d constantly be playing catch-up to increase our signing skills. But we knew what we had to do.” Determined, Marnie and Daniel had passed BSL at Level 2 just four months after Ivy was diagnosed and had her hearing aids fitted. “The signing weekend was lifechanging,” says Marnie, remembering it as the first time Ivy had spent time with deaf adults. “It was deeply moving to watch her engage and respond. It was clear that she was part of the Deaf community – and that we were welcome.” “BSL challenges us every second and we wish we were better at it,” says Daniel, who’s now learning Level 3.

With BSL firmly part of their lives, Marnie and Daniel were surprised to discover that another option may be open to Ivy – a cochlear implant. Previously they’d been told that an implant wouldn’t be possible for Ivy because her cochleas weren’t formed. Later faced with the discovery that Ivy’s cochlea could be implanted on one side, Marnie and Daniel had no hesitation. “Our guiding principle was always to do whatever we could to broaden Ivy’s horizons. That was the principle that led us to BSL – to get Ivy to a place where she could use language and communicate meaning – and that principle took us to the cochlear implant too,” says Daniel. Ivy’s response following the implant switch-on took time, and now it’s unclear how much speech she can make out and how her English will develop. “We went into the implant hoping for the best, but we were never hanging our hopes for communication on it – we knew it may not be successful,” says Marnie, aware that the outcome of cochlear implant surgery is never certain. Now the family use a mixture of speech and sign, and respond to what feels right at the time. “I sometimes read simple bedtime stories in English, with a bit of sign support, whereas Daniel tends to use BSL,” says Marnie. “Ivy’s BSL is years ahead of her English – that’s her first language,” says Daniel. “We’re potty training now, and that’s all happening in BSL.” Nursery is the latest milestone for the family, and the culmination of the decisions they’ve made so far. “Every decision we’ve made has been to open up as many options as possible for Ivy, and give her full access to a first language,” says Marnie, excited by the opportunities nursery brings for Ivy at a sign bilingual school where BSL and English are used together in the classroom. “She’ll have Deaf role models and Deaf peers, and that’s what we were aiming for. It just wouldn’t have been possible where we were living. In the future, Ivy won’t have to choose between our family and the Deaf community – she can be a part of both,” says Marnie, proud of her daughter starting nursery with a bright future ahead.

“Our guiding principle was always to do whatever we could to broaden Ivy’s horizons.”


NDCS Families • Winter 2016

0808 800 8880 •

EARLY YEARS NEW wint chec er klist

04 to

years old

Your winter checklist for the pre-school years

Toys with hearing devices

Would your child like a toy with a hearing device like theirs for Christmas? Connevans sell a cheeky monkey toy with cochlear implants ( – search for ‘Buddy Monkey’) and #ToyLikeMe provides a round-up of where to buy toys that represent deafness.

Signed Christmas songs and stories

For signed Christmas stories and songs check out ITV’s Signed Stories app for iPhone and iPad. It’s free to download but you’ll need to buy individual songs and stories. Or try YouTube for more signed Christmas songs.

Worried about your child going to nursery?

“In the future, Ivy won’t have to choose between our family and the Deaf community – she can be a part of both.” If you’d like more information on how to choose a communication method with your child, have a look at the communication section of our website To find out more about cochlear implants see For an introduction to British Sign Language go to familysignlanguage. • 0808 800 8880

Your child going to nursery or preschool can be a worrying time but with the right support they can thrive. Watch our video where mum Emma tells us how she made sure her son Toby (3) who wears hearing aids, got the right support at nursery.

NDCS Families • Winter 2016


Born too soon Alfie, who is profoundly deaf, was a late summer baby which meant when he started school he’d be a year younger than many of his classmates and likely to struggle. So parents Melissa and Mark applied to delay him starting school by a year…


elissa smiled as she watched her son Alfie, then three, comprehension. There was no way he was ready for school.” Melissa and Mark were worried and talked to their make snorting ‘piggy’ noises as he fell about giggling. Teacher of the Deaf and she came back with some Old MacDonald had a Farm was one of his favourite information – it was possible to delay starting school for a nursery rhymes. She pressed ‘play’ on the CD again for him year. The couple asked the head teacher about it. He said then got back to the letter she’d just opened. It said Alfie that legally children didn’t have to start school until they had a place at the local primary school that year, with term were five but he insisted that if Alfie deferred a year, he’d starting on August 27. She shook her head. It was crazy to have to somehow make up the lost time. He suggested one think of Alfie starting school in a few months. “Alfie just way was to leapfrog straight to Year 1 rather than starting in wasn’t ready for school,” says Melissa. “He’d be the youngest reception. “That was ridiculous,” says Melissa. “Alfie would in his year, a year younger than some of the other children – be worse off because he’d have missed out at such a young age that’s a big deal in terms “He’d be only on a year’s schooling.” Then the school came of development.” Alfie had been diagnosed as profoundly three when he up with an alternative suggestion – going deaf at four weeks old and fitted with hearing started school!” part-time for the first term. But that was no solution. “He’d miss out on half the classroom aids at six weeks, though they didn’t help him. time plus it was really important that he fit in with his other He was 10 months before he got his first cochlear implant classmates, especially being deaf. If he was only there partand it was switched on a month later which meant in his first time, he’d feel left out,” says Melissa. year Alfie heard almost no sound. “To start school and be The couple were resigned to Alfie starting school that a year younger, plus having missed out on a year’s language year, but then their Teacher of the Deaf found out from the development would effectively put Alfie two years behind the council’s school admissions department that Alfie could other children,” says Melissa. “He’d been to pre-school for just defer school for a year and have ‘low-flyer’ status. Being a seven months, he still had a two-and-a-half hour nap in the ‘low-flyer’ means a child can be kept back a year and not afternoons. In fact, his birthday was August 31, which meant have to make that time up by skipping a year to remain with he’d be only three when he started school!” the same peer group, as a child usually would if they started Mark always thought of Alfie as seeming much less school after they were five. “It meant he’d never have to mature than the other children starting school at the same make up the time he’d lost out on,” says Melissa. “We hated time. “He tended to play with younger children,” says the term ‘low-flyer’ but it was the best way forward for him, Melissa. “He was still into nursery rhymes. We had piles of so we went for it.” books we’d read to his older brother Toby when he was two To get the status, they had to write to the admissions or three years old, but Alfie didn’t have the language and the 20

NDCS Families • Winter 2016

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5 10 to

years old

Your winter checklist for the primary years If your child’s birthday is on or between 1 April and 31 August and you live in England then they could start school a year later if you think it would be best for them. A delay in starting school could give your child the chance to develop the language, communication and social skills they’ll need to make the most of the opportunities school offers. Find out more at

department stating what benefits Alfie would gain by holding back for a year. The couple wrote that if Alfie started school in the year he was meant to he’d only be three and wouldn’t have the stamina. They’d read a National Deaf Children’s Society article explaining how the extra effort to listen all day was tiring for deaf children, so this would make matters even worse at his young age. The school agreed to it and their Teacher of the Deaf wrote to the admissions department showing her support for the couple’s decision, which is one of the requirements for low-flyer status. They’ve never looked back. “It was an easy decision,” says Melissa. “The extra year at home paid off brilliantly. Instead of school, Alfie had five mornings a week of preschool where they had a fantastic leader who taught phonics to them. “When Alfie started school he hit the ground running; he was equal with the other children. If he’d started the previous year he’d have struggled and wouldn’t have had the same confidence or social skills. He loves the fact that he’s the oldest!” “It affects Alfie’s Now aged nine, Alfie’s grades are on a par with his classmates. He’s a little whole life, his future, behind on the regular language tests the for the better.” Teacher of the Deaf carries out, but the gap is closing. And he likes reading books to his younger brother Casper (2). “So many parents don’t know about deferring a year or of low-flyer status. But you hear about summer babies not getting as good results as other children, and that’s without the added challenge of being deaf,” says Melissa. “The ironic thing is had Alfie been born just 12 hours later than he was (and in fact he was a week early), he’d have started the following year anyway!” “It was a big decision to make but an easy one,” says Mark. “It was the right thing to do. It affects Alfie’s whole life, his future, for the better.” • 0808 800 8880

Communicating in the car If you’re going on a long car journey over the holidays, have a look at our information on products and apps that could be helpful. uk/communicatingincar

Is your child starting secondary school soon? If your child starts secondary school in September and has, or is getting, an Education, Health and Care (EHC) plan, this must be reviewed, amended and finalised for children transferring between phases of education by 15 February. This allows time to appeal the plan (and school placement) if necessary. Download our factsheet Annual Reviews of Statements of Special Educational Needs Plus Transition Plans (England and Wales) for more information.

Missing school for medical appointments Deaf children often have to miss school for audiology or other medical appointments that can’t be booked outside of school hours. We have information about how these absences should be recorded and how schools should make reasonable adjustments so your child isn’t disadvantaged in attendance award schemes. Have a look at www.ndcs. NDCS Families • Winter 2016


When glue ear doesn’t

Many parents are told their child will grow out of glue ear, but for some children it s Michelle’s son Cody (12) is still affected by it, but things are improving...


crash and a howl of rage sent Michelle dashing into the lounge where she found her then four-yearold son Cody sobbing. The coffee table and a chair were upturned, his toy cars flung everywhere. She held him until he calmed down. “He was always having tantrums, was often naughty and ignored me when I called him. He was like Jekyll and Hyde, happy one minute then raging. He even had anger management therapy, but that didn’t help,” remembers Michelle. Cody was born with a cleft palate and it was during one of his routine check-ups, soon after he’d started school, that reasons for his behaviour emerged. “He had an ear infection and the consultant sent him for a hearing test,” says Michelle. “The audiologist diagnosed glue ear, which is common in children with a cleft palate. She said he was moderately to severely deaf. It all made sense; he’d had constant colds and ear infections, including perforated eardrums, since he was a baby. His behaviour was due to frustration because he couldn’t hear properly.” Within a few weeks Cody had grommets inserted. “His hearing was no better though, nor his behaviour, and the grommets fell out within weeks,” says Michelle. When the doctor suggested more grommets Michelle refused. “He’d already had 10 operations, including for a hernia, several on his mouth and two major ones for his cleft palate, and I didn’t want him having unnecessary surgery. I wanted him to have some childhood.” She opted for hearing aids, which were fitted a week later. The difference was immediate. “He was so brighteyed, like ‘Wow I heard that!’ He kept asking me why I was shouting! His behaviour improved and, best of all, 22

NDCS Families • Winter 2016

he’d actually talk to people whereas before he wouldn’t. He’d been quite withdrawn and embarrassed to keep saying ‘pardon?’ Now he joined in with other children and made friends,” smiles Michelle. Cody had missed lots of school due to medical appointments, colds and ear infections, especially in winter, and lagged behind his classmates. But once he had hearing aids, his Teacher of the Deaf arranged for one-to-one support at school – including after-school clubs – and Cody began making progress. But Cody continued to get ear infections and in one year had 12 courses of antibiotics. By the time he started secondary school he was more than two years behind his peers, so he went into a ‘fast track’ class for extra support. “It was his primary school head teacher who recommended putting him forward for it; lots applied but there were only 11 places,” says Michelle. “Being in a small class means they each get lots of time with the teacher, so they learn better.” Cody’s glue ear persisted, meaning he kept having to go back and forth between his GP and ear, nose and throat (ENT) specialist where he’d have micro-suction to clear wax, which helped keep infections away. Last Christmas, an MRI scan and an exploratory operation revealed infection had gone deeper into Cody’s ears and started eroding his mastoid bones. Risks included meningitis if the infection spread further towards his brain. So in July, Cody had a mastoidectomy on his left ear to remove the infection and smooth out nooks and crannies inside his ear where fluid and infection could collect. He also had a tympanoplasty to repair his eardrum. “It was really frightening –

the operation took eight hours,” says Michelle. “But a hearing test showed his hearing was up by 40 decibels. His consultant gave a 15% success rate of removing the infection completely. Cody couldn’t put his left hearing aid in until it healed but he could hear as well as if he’d been wearing it! Thank goodness, after all he went through, it worked well.” They’ll wait to see if he needs his left hearing aid but the real test is this winter – whether the glue ear stays away in that ear. Next year he’ll have the same done to his right ear. Meanwhile everything’s going well for Cody; Michelle is thrilled with his progress. “He’s still two years behind, but he’s getting there. We’ve been very lucky and had good support, mostly arranged by his Teacher of the Deaf. There’s a children hearing impairment team (a CHIT, made up of a group of professionals involved in Cody’s care, including his Teacher of the Deaf, audiologist, speech and language therapist and teaching staff ) who meet regularly to discuss Cody’s needs. “Since Cody’s had hearing aids he’s become the most outgoing person around! He’s so confident, he’ll do anything, talk to anyone. He loves animals and goes horse-riding. He belongs to a youth club and has good friends. If he’s had an operation, or has a cold, his balance is off and he stumbles and his mates will walk close beside him,” says Michelle. “Last term Cody was awarded a 100% attendance certificate and he’s thrilled – it’s the first time he’s not been off with ear infections, as the micro-suction stopped infections building up. Cody doesn’t have a disability, it’s a way of life and it’s not holding him back at all.”

0808 800 8880 •


stays with them beyond primary school.

TRANSITION YEARS NEW wint chec er klist

11 13 to

years old

Your winter checklist for the secondary years Deaf awareness

Family gatherings over the festive season can be difficult for deaf children if not everyone is deaf aware. We have lots of resources you can use to help remind friends and family members. Have a look at and in particular check out our 11 tips for communicating with a deaf child at

School exclusions

Has your child been excluded from school? Some exclusions are lawful while others could be disability discrimination. Find out the difference and what to do if you think your child has been discriminated against at


“He was like Jekyll and Hyde, happy one minute then raging. He even had anger management therapy, but that didn’t help.”

While the internet can be a great place for deaf young people to connect with others like them, it does come with its risks. If your child is being cyberbullied or is worried about cyberbullying, tell them to look at the information on the Buzz, our website for deaf young people. keepingsafeonline If your child has glue ear you can find lots of information at • 0808 800 8880

NDCS Families • Winter 2016


Skills for life Two young people tell us how our new life skills transition events for 16–18 year olds have helped them prepare for their futures.


n August we ran a five-day residential event in Ashford which was attended by 11 deaf young people aged 16–18. The event was a mixture of challenging team-building outdoor activities and life skills workshops, covering topics such as money management, planning for the future and first aid training. Each morning the young people took part in activities led by instructors from Kingswood – Grosvenor Hall which included climbing, abseiling, a giant swing and a high ropes course,


NDCS Families • Winter 2016

and then in the afternoons they attended the workshops. Our amazing volunteers were on hand to support the young people during the event and interpreters provided communication support for the workshops. The money management session, delivered by Barclays Bank, was designed to educate young people about effective budgeting, bank accounts and managing their money, while developing their confidence and understanding of the future impact of their choices. The My Future session,

delivered by our staff, helped the young people to find out more about the support available for further education, training or employment and how to pay for it. It also encouraged them to think more about their future plans and the importance of interview preparation. St John’s Ambulance ran a tailor-made Student First Aid four-hour basic course where the young people were taught about choking, communication and casualty care, fainting, first aid kits, the recovery position and resuscitation. 0808 800 8880 •


Awa (18) who is moderately deaf told us how she got on at the event. I’ve attended a lot of National Deaf Children’s Society events before, including a recent Essex football match where I played football with Joey Essex! I decided to go to this event as I wanted to get detailed information about my future options. I love health and social care but I wasn’t sure what I wanted to do in the future. I thought about it before, but the event opened my mind to exactly what I should do next to get where I want to be. I felt quite happy to go to the event but a bit anxious as this was the first time that I’d travelled by train to Ashford by myself. So for me and my family, this was an achievement that I’m very proud of. On the first day we got to know each other and played some games. On the second day we did activities such as the giant swing and other teamwork activities at the same time as getting to know each other a lot better. In my free time I spoke to the new friends I was making, having conversations and getting their contact details so we could stay in touch. I especially enjoyed the giant swing because it was really funny but a bit scary at the same time as I didn’t expect the swing to come down so fast. I got along well with everyone as I find that I communicate well in the way I speak. I made some new friends that I’ll contact again to meet up for a day out. This event made a difference as I learned some skills to help me decide what I really want to do in the future. I left with my eyes opened and I’ve now made a strong choice on what I really want to do in my future career. It was a very informative and fun event. You can have a great laugh and your social space expands to make new friends. Guy (17) who is moderately deaf and wears hearing aids also attended the event. I wanted to go to the National Deaf Children’s Society event to make new friends and I was most looking forward to the activities. My favourite activity was the giant swing, which was really fun, but I also really enjoyed the rockclimbing. I got on really well with everyone at the event and it helped me with learning how to make friends. I now think I’ll socialise more in the future. I’d encourage other deaf young people thinking of going to one of these events to go for it – they’ll definitely have fun.

To find out more about our events for deaf young people see • 0808 800 8880

NEW wint chec er klist



Your winter checklist for the post 14 years Going to the cinema or theatre

If your child is going to the cinema or a pantomime over Christmas, you can check for subtitled film showings at and captioned theatre performances at and contact the venue beforehand to see if they have any equipment such as a room loop, neckloops or some sort of headphones. For more information and advice on products that can help deaf people to listen and communicate in noisy and public places, go to our technology webpages at communicatinginnoisyplaces.

University applications

If your child is applying to university then make sure they’re aware of the deadline for applications for most undergraduate courses in the UK, which is 6pm on 15 January 2017. Have a look at the key dates section of for more information. Find out more about higher education for deaf young people at

Emergency SMS

Hopefully your child will have a fun and safe holiday over Christmas. But in case they ever need to contact the emergency services, they can register their mobile with the 999 service so they can send a text message instead of making a phone call. Find out more at NDCS Families • Winter 2016


Raising the Bar eve Our young stars prove that deafness isn’t a barrier to achieving in the arts. What is Raising the Bar?

Raising the Bar is our competition to find talented young deaf dancers, musicians and, new in 2016, actors to prove that deafness isn’t a barrier to achieving in the arts. Back in January 2016 we launched the second competition open to all deaf young people aged between eight and 18 across the UK. We asked entrants to send in a video of their performance skills and the winners received a place at a masterclass directed by leading deaf professionals in the industry. They then had the opportunity to show off their new skills in a showcase performance at the end of the weekend. Following the success of Raising the Bar 2015 we were pleased to run the competition again this year, this time with the masterclasses being held at the prestigious mac Birmingham arts centre in the West Midlands. Also new for this year was the drama category, with Deafinitely Theatre joining Music and the Deaf, and Deaf Man Dancing to lead the third masterclass. We were delighted to receive a whopping 60 entries for this year’s competition and to offer 24 places to very talented deaf young people. Each of them was absolutely outstanding and we were honoured to present their performances in our showcase at the end of the weekend. All of the parents who responded to our survey said that their child gained confidence after attending Raising the Bar and we’re delighted that some of our stars have been offered further dance, music and drama opportunities since the event. It’s very important that deaf children and young people are seen as equal to their hearing peers in the arts industry. Raising the Bar is all about increasing expectations of what they can achieve, to prove that deaf children and young people can be just as good and perform to the same high standard as their hearing peers. Through the showcase, our stars of Raising the Bar 2016 have proved that they absolutely can!


NDCS Families • Winter 2016

Chloe (16) who is profoundly deaf, won a place at the drama masterclass.

My experience at the Raising the Bar weekend was interesting and fun. I participated in the acting masterclass and learnt skills such as improving my confidence at performing, slowing down my speech during the monologue and also how to keep in character. I performed the Lady Macbeth crazy scene at the showcase. During the weekend, I made friends from all groups and I’m still in contact with most of them. My favourite bit of the weekend was when we had to improvise and make up a character at a bus stop. When it was my turn to improvise, I was with a boy called Ciaran and he proposed to me and I wasn’t expecting it but it made a good piece of improvisation. After this weekend, it helped me think more about what I want to do in the future which is to be a part of the film industry. I went for an audition to be in a film – I didn’t get it but it was an experience. At college I’m doing media but I’ll also try to do acting as a hobby and look for more auditions. 0808 800 8880 •


en higher Parents said:

The tuition given to my daughter was fantastic and helped to increase her confidence as well as provide specialist advice. It was a wonderful opportunity to have this experience. My daughter was very appreciative of the excellent masterclass in which she participated. [After Raising the Bar my daughter had a] better sense of herself as a proud, deaf child. [My child] loved meeting lots of different people with different degrees of hearing impairment and is now much more confident to just have a go at music. My daughter enjoyed the classes immensely; it was a very inspiring weekend for her, musically very exciting and a revelation from the perspective of performing, responding and creating music with a hearing loss. My daughter was also very relieved to talk to other young people with a hearing loss and have the opportunity to share the challenges they face in their lives.

We had the best weekend – thanks to the National Deaf Children’s Society for the opportunity. Lizzie, Chloe’s mum, said:

I was thrilled that Chloe was chosen to take part in the Raising the Bar weekend. She’s always shown an interest in acting so it was a big boost to her confidence that she got to showcase her acting skills and make friends! Chloe got so much out of the experience and worked with people who taught her some helpful skills. She’s kept in touch with a lot of the people she met and still talks about it. I made a couple of friends too and it was nice to meet mums in the same situation with deaf children. We had the best weekend – thanks to the National Deaf Children’s Society for the opportunity. • 0808 800 8880

[My daughter] really enjoyed meeting other deaf children. She’s at a mainstream school so doesn’t often meet children who have the same experiences she has. My daughter’s now in touch with other young people that she met during Raising the Bar, it’s a great help to be part of this community. The weekend gave my daughter confidence and she feels supported by a wonderful organisation and can mutually support and be supported by other young people in the same situation. We know that the Raising the Bar weekend meant a lot of organisation – we really appreciate the work and the careful and caring thought involved in making this a memorable weekend for us. We were also inspired by the other participants and it was a great privilege to be part of Raising the Bar. For more information about how we can support deaf children and young people to enjoy the arts, have a look at and NDCS Families • Winter 2016


How do I... my child cope with tiredness?

Deaf children are often more prone to tiredness and this can have an effect on behaviour and concentration. Here, four parents share their tips on how to manage tiredness. Jenni is mum to Harry (5) who has moderate to severe hearing loss and wears hearing aids in both ears. As Harry has got older the main effects of tiredness are not paying attention or listening, being cheeky and general grumpiness. He can also be a little over-sensitive and get upset over little things that wouldn’t normally bother him. After school-related issues were ruled out, I started to think he may just be exhausted after the school day. There’s a boy in his class who often prefers to eat lunch in a quiet classroom and if Harry’s having a bad day he sometimes enjoys eating lunch with him. It gives him a little time out. One day, on the walk home, he was being really difficult so I told him when we got home he had to go to his room for 10 minutes and think about his behaviour, and it seems to have done the trick! Most days he tells me he’s going to his bedroom for 10–20 minutes to, as he calls it, ‘chill out’. Sometimes he’ll take his hearing aids off, sometimes not. When he’s ready to come downstairs he’s perked right up and is back to his usual happy self. A little bit of time out works wonders for him and it’s made the world of difference to both our lives. Every child is different but take note of what times of the day problems are arising and see if there’s a pattern. And I’d definitely recommend some quiet time after a busy day. It’s easy to forget how tiresome a day can be for a Harry deaf child.

Join our family panel

“How do I… support my child to travel independently?” Next time in Families magazine:

If you have any tips, advice or suggestions to share, get in touch at


NDCS Families • Winter 2016


Samantha is mum to Olivia (13) and Harvey (12). Harvey is profoundly deaf in both ears and has bilateral cochlear implants. Harvey’s teachers at primary school noticed he would make clicking noises and other sounds in afternoon lessons. Sometimes he’d engage in silly behaviour and be easily distracted. His Teacher of the Deaf thought it was due to listening fatigue (which can also be referred to as concentration fatigue), with the effort of listening and lip-reading becoming too much for him towards the end of the school day. I researched it and it all made sense: the behaviours were more noticeable in lessons where he wasn’t supported, wasn’t fully engaged or didn’t enjoy it as much. These actions were simply Harvey’s way of staying alert while his brain was frantically trying to fill in the gaps of what he couldn’t hear. Harvey now attends a local mainstream secondary school and has a one-to-one learning support assistant (LSA). Mainstream schools often have limited experience of deafness and may not have heard of listening fatigue and it can be a challenge for parents to educate staff so that their child gets the appropriate level of support. Harvey now has an Education, Health and Care (EHC) plan which includes strategies to bring Harvey’s attention to his noises and behaviours so he can take control and stop them. This usually works but if he continues the LSA can allow him to read for 5–10 minutes or have a short break. They can also take him out of the classroom and continue the lesson somewhere quieter. He attends a really supportive school and is Harvey doing really well now. 0808 800 8880 •

HOW DO I...?

Melanie is mum to James (23), Alex (18) and Jack (17). Jack has a fluctuating hearing loss ranging from moderate to profound and wears a hearing aid in his right ear. Jack’s hearing impairment got worse three years ago. He went to bed with his usual level of deafness and woke up the next day completely deaf in his left ear. He mainly copes with tiredness by having frequent communication breaks where he takes himself off to his room for some downtime. Obviously this isn’t possible at school, so he’s particularly tired when he gets home. This makes homework/coursework and/or studying for exams a very stressful time. The stress often then impacts on his general health which has a further impact on his tiredness. When he’s tired he gets very emotional, confrontational and angry. I help Jack break up his homework and studying into manageable chunks and timetable it with lots of breaks in between. I sit with him while he’s working to help him stay on task but I let him lead the timetabling process so it’s manageable for him. I encourage alone downtime, but I always make sure he knows I’m here for him if he needs to shout, scream, cry or vent his Jack frustrations.

Lucy is mum to Edward (12) and Emily (9). Emily has moderate to severe hearing loss, wears hearing aids and uses a radio aid and a soundfield system. Emily is always tired, especially on school days, so we limit after-school activities. Days out are planned in advance and quiet time is factored in. Sometimes she wants to take her hearing aids off and not do anything. More often she becomes emotional and frustrated and hates deafness. Let your child have a break from their hearing aids when they choose. This shows them that they are in control, not their deafness. If your child doesn’t like too much noise check your holiday destination – once we made the mistake of going to a seaside that was too noisy and Emily became exhausted. Tell them it’s okay to be tired and if they become frustrated stop whatever you were doing, hug them and ask what’s making them feel that way. Let them take out their frustration on bubble wrap or rip up paper with them and soon the frustration may turn into laughter. Emily

For more information and tips on how to manage tiredness in deaf children see To find out more about EHC plans visit • 0808 800 8880

NDCS Families • Winter 2016


Hitting the road Since our revamped Roadshow hit the road last summer we’ve travelled all over the UK to reach deaf children and young people, their families, friends and professionals working with them. Back in July 2015 our new Roadshow, previously the Listening Bus, took to the road with its first visit to Whitehall Primary School during our London tour. Since then, the Roadshow has travelled all over the UK, going as far afield as the Orkney Islands. We’ve been developing our existing workshops while creating new ones, such as Staying Safe Online, so we continue to provide the best support and up-to-date information for children and young people. It’s been a year of changes for the Roadshow team, as we said a very sad farewell to Damian Ball, our Roadshow Manager of seven years whom many of you will remember. Damian, who has been nominated for an award for his educational support work, has now gone on to a different role within the National Deaf Children’s Society. We’ve welcomed Alexa Roseblade, our new Roadshow manager, to the team and Mark Gill has joined us as an outreach officer helping to expand the team so we can make as many visits as possible. During the last year the Roadshow has visited schools and colleges, attended family events and open days and even supported the Getting it Right from the Start campaign at Scottish Parliament, working alongside our inspirational young campaigners (see page 9 for more about this). 30

NDCS Families • Winter 2016

In the past year the Roadshow has reached:

over 1,000


deaf children and young people


hearing child young p ren and eople

abou0t nearly 9s0ionals who 50 0 profes porting fa e sup ar



To find out more about our Roadshow, when it’s visiting your area and how to book it see roadshow. 0808 800 8880 •

Visitors to the Roadshow said: “I loved visiting the Roadshow, we had the Who Am I session and it gave me a chance to talk about how I feel about being deaf and to think about all the good things like getting a good night’s sleep and extra support in class.” Joseph (9) who has cochlear implants and visited the Roadshow in Northern Ireland. I enjoyed my visit to the old Listening Bus but I remembered it looked a bit old. I was surprised when I saw the new Roadshow! It was really bright and I loved the windows all the way round it. I was excited to go in. There was so much more space inside. Last time it was a bit cramped and we all sat on the floor but this time we had lots of room and chairs just like a proper classroom. It was really interesting seeing all the new technology and I enjoyed the My Future workshop. I’m in Year 11 now and starting to think about what I’ll do when I leave school so it was good to talk about what choices I have. The great thing about the Roadshow is they have lots of people from school go on the bus to learn about how to talk to deaf children which is really helpful. Charlie (16) who is profoundly deaf “We met Mark, a deaf person who was fun and good at acting.” “We watched a PowerPoint presentation and discussed deafness.” “We had fun; it was enjoyable and informative.” “We found the workshop interesting.” “We met new people.” “We met people from the National Deaf Children’s Society who were very friendly.” “We enjoyed going out of school for a change.” Hearing pupils from Firth School in the Orkney Islands who attended a deaf awareness session on the Roadshow. Our children had the deaf awareness workshops. They really enjoyed the sessions, had fun learning new signs and most importantly have a better understanding of what it means to be deaf. Emily, Teacher, Northampton “The information received from the Roadshow team is invaluable! The delivery of the sessions was so engaging – students were totally focused on every word.” Karen, Teacher, Nottinghamshire “What a fantastic experience for our young people, families and professionals.” Barbara, Teacher, Orkney Islands • 0808 800 8880


“I’ve had the privilege to visit the Roadshow bus on many occasions and have always seen positive reactions from the children. They’re always so excited about the technology and it’s brilliant that they can loan it from the National Deaf Children’s Society. After the visit, at least 10 of our children have borrowed the vibrating alarm clocks and they really love being able to be independent and get themselves up in the mornings. Without the visit from the Roadshow, they wouldn’t have been aware what was possible for them to gain independence!” Rose, Communication Support Worker, Essex “Clearly a lot of thought has gone into the planning of the Roadshow bus internally and the exterior is just as eyecatching and inviting! The new Roadshow is a fantastic size, the space is brilliant to accommodate a larger group of pupils and staff and I really liked the posters covering the front porch as it gave the space privacy. The technology on the bus was fantastic!” Gillian, Teacher, Scotland The best thing about the visit was that it has improved deaf awareness in school. Having such positive deaf adult role models amongst the Roadshow team was really great for our deaf pupils. Samantha, Teacher, Greenwich

We’re re of the w ally proud or by our R k carried out oa excited dshow and ahead. for the year We hop e to you on our trav see els!

We could tell you how comfortable it is to live here but we think Tylerʼs face says it all

Cued Speech makes spoken language visible Cued Speech uses hand shapes near the mouth to clarify the lip -patterns of your normal speech. It complements the use of both cochlear implants and BSL

It’s never been easier to learn Cued Speech  Call, or book a free Skype for an informal chat with experienced Cued Speech users

 Train at home, at a time right for you, through Skype  Use free e-learning to build skills  Bursaries for parents where needed “The discovery of Cued Speech and what it could do for our son and for us as a family was profoundly liberating and life-changing….” 01332 362512

Contact us at T: 01803 712853 E: W: Charity registered in England and Wales No 279523

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


Ask the


r o n a e El

Each issue a different professional shares their expert advice and gives information to help you support your child. This time Eleanor Whitworth, Clinical Specialist Occupational Therapist from Deaf Child and Adolescent Mental Health Services (Deaf CAMHS), shares her insights. What is Deaf CAMHS?

It’s a child and adolescent mental health service in England that offers accessible support to deaf children and young people and their families. Deaf children can be at greater risk of mental ill health and can be disadvantaged in accessing mainstream mental health services. We work with children from 0–18 who either have severe to profound hearing loss, use British Sign Language (BSL) as their preferred language or have a significant language impairment related to a moderate to profound hearing loss (which has a recognised impact on mental wellbeing). We also work with children of deaf parents.

When and how might a child be referred to you?

Children can be referred to our service by any professional working with them who feels their mental and emotional wellbeing needs supporting. We work with children (and their families) with a wide range of emotional, behavioural and mental health problems that are having an impact on their daily lives. These include anxiety, challenging behaviour, difficulties with attention and focus, and social communication issues. • 0808 800 8880

What sort of support can you offer a child?

First we gather information to understand how we can work as a team with the family and others supporting the child to improve their sense of inclusion and self-esteem. Different types of support are available such as sessions focusing on communication, family work, talking therapies, medication, treatments, sensory based interventions, and therapeutic play, which can be useful for children with limited language skills. We have staff with a range of BSL skills and use registered qualified interpreters. Deaf CAMHS have also developed specialist assessments looking at specific areas of difficulty, such as social communication, and what might be causing these, for example delayed language or autism.

Do you have any tips for parents whose children might be struggling with their deaf identity?

Young people have told us it’s important to have deaf friends, which can be difficult at a mainstream school or as a resident at a deaf school far from home.

Accessing local National Deaf Children’s Society events is a good way for deaf children to build relationships with others nearby. We also encourage people to talk openly about mental health. One in 10 children will face mental health issues in any given year and many still find it hard to talk about due to fear of stigma.

What should parents in Wales, Scotland and Northern Ireland do if they need support for their child?

You should access mainstream CAMHS services. It’s important to make sure professionals have as much information as possible about your child’s deafness so they can try to understand if and how it may be impacting on your child’s mental health. Remember you have a right to access BSL interpreters if this would be helpful for your child, and these should be provided by the service you’ve contacted. To find out more about other professionals who may support your child go to

NDCS Families • Winter 2016


Appealing a school placement

Choosing the right school for your child can be difficult for any parent but it becomes even more difficult if you’re then refused a place at your chosen school. What can you do to appeal if this happens to you? How to appeal will depend first on whether you live in England, Northern Ireland, Scotland or Wales, and second on whether your child has a plan or statement setting out their special or additional educational needs. If your child doesn’t have a plan or statement, there will usually be a number of stages, as set out below.

• Read the letters explaining how to appeal carefully.

After you’ve informed your local council of your preference for your child’s school, they will write to you with their decision.

• Make a note of the deadlines

The letter will usually say how you can appeal if you’re not happy with the decision. It should also state the deadline for appeals. In England, this is 20 school days.

• Make sure you can set out

Once you’ve made an appeal, you should receive another letter saying when the appeal will be heard and who by.

The appeal is usually heard by a panel of people. In Wales, if there are lots of appeals about a particular school, these may first be heard all together at the same time. This means you will be appealing along with other parents. This may be followed by an individual or private second appeal stage. Once they’ve heard the evidence the panel will get in touch with you with their decision. In most cases this decision will be final. How to appeal will be different if your child has a statement of special educational needs (England, Wales, Northern Ireland), an Education, Health and Care plan (England) or a coordinated support plan (Scotland). These are legal documents setting out your child’s needs. In these cases, there’s a special form to complete and process to follow. Your appeal will normally be heard by a Tribunal, rather than a panel. The Tribunal will decide which school should be named in your child’s statement or plan and the local council must then make sure your child is able to go to this school. 34

Top tips

NDCS Families • Winter 2016

for your appeal. clearly why you feel your child should go to a different school. If you have any evidence to support this, make sure the panel or Tribunal have it.

• Appealing a school placement can be stressful. Don’t be afraid to ask your friends and family for help.

• If you’re unsure about any of the details, contact your local council and ask for clarification or look at their website. You can also contact our Freephone Helpline for advice and support.

0808 800 8880 •


Sherrie is mum to Megan (4) who is profoundly deaf and wears bilateral cochlear implants. She appealed Megan’s primary school placement earlier this year.

Supporting your child’s education this winter

The school we chose for Megan had been acoustically treated and had experience with other hearing impaired children. It was also If your child will be taking exams a smaller school meaning fewer children and less noise during break this year, there’s lots you can do times. Megan would have a good listening environment there while to help them prepare and their still being kept within the routine of the other children in her class. school or college can make special However, Megan was placed at a much larger school and I felt the arrangements for them. Find out environment was too noisy for her. The building was also old with more at high ceilings and acoustically challenging – she would continually be in a poor hearing environment. There are lots of simple activities When we got Megan’s placement we didn’t have an Education, you can do at home to promote your Health and Care (EHC) plan (which names a specific school a child child’s language development, as should attend) in place. Although refused assessment for one well as help them with reading and initially we re-submitted our application with more supporting maths. Our publications Helping evidence from our implant centre. This time Megan was granted Your Deaf Child to Read and Write an EHC plan assessment however, as our school of choice was and Helping Your Deaf Child Develop now full, they declined to be the named school on the plan. I then Maths Skills are tailored for different had to formally notify the local authority that I wasn’t happy with age groups and can be ordered from the decision made and why. I also kept in close contact with our or by assessment and planning officer – a good relationship with her was calling our Freephone Helpline. a great support. Our local authority then directed our chosen school to take Megan and she started there in September with her EHC During the winter months all plan in place ready. children, including those with a It’s really important to start this process with plenty of time. If our permanent hearing loss, may be EHC plan had been in place and the school named before school more likely to develop glue ear. admissions opened we would have originally been placed at our Find out more at school of choice. I also made sure that when viewing schools I had a robust checklist to make sure our chosen school was suitable for Megan. This made giving reasons for Our website has more detailed information on how to appeal in England, our choice much easier and I was Northern Ireland, Scotland or Wales. confident in our decision. Keeping in For more information about choosing a school for your child, contact and asking for constant including a checklist of questions to ask when you visit schools, see updates from our planning and assessment officer and Teacher of the Deaf was also key in getting all of To find out more about appealing special educational needs decisions visit the information together. • 0808 800 8880

NDCS Families • Winter 2016


Time for T

Technologies come and go, but deaf people have been using the T programme successfully for years. Using the T programme could allow your child to hear music, TV, phone calls and have conversations clearly, without unwanted background noise. What is the T programme? The T programme (also called the T setting, telecoil or just T) is a programme that is probably already built into your child’s hearing aids or implants – it just needs your audiologist to activate it. Unlike a standard microphone programme (M), the T programme doesn’t amplify sounds – instead it picks up magnetic fields from loop systems and converts these into sounds in the hearing aid itself. Because you only hear the noises from the loop system, this cuts out unwanted background noise and allows you to hear the sounds you want to hear better.

What could my child use the T programme for? The T programme works with loop systems which can be found in many different products and places so it can help your child in many ways: To hear the TV better Your child could use a TV listener (a transmitter connected to the TV that wirelessly transmits sound to either a receiver your child can wear around their neck or a speaker placed near them) or you could install a room loop system in your main TV room. “Ben was interested to see if this TV listener would help him when watching TV at home and the Smartboard at school. He said it sounded really clear and it was good that others can still hear the TV too.” Heather, mum to Ben (11) who wears a hearing aid in one ear. To hear music or sounds from their smartphone, tablet or MP3 player A portable loop system, such as earhooks or a neckloop, can be plugged into any device with a


NDCS Families • Winter 2016

standard 3.5mm socket. These are a cost-effective way to listen to music and earhooks look just like earphones when in use. “With the earhooks he could listen to his music clearly. He liked it because it keeps other noises out while he is listening to music.” Sukhi, mum to Iqbal (16) who is profoundly deaf. To hear music or make mobile phone calls Your child could use a Bluetooth neckloop which connects to their hearing aids or implants using the T programme and will link with any Bluetooth enabled device, such as a smartphone or tablet. They can listen to music and this will pause automatically when they receive a phone call. They’ll be able to hear the conversation clearly and Bluetooth neckloops have a microphone so they can also talk. “With the Bluetooth neckloop, Alex found that phone calls are much better and he can listen to music and watch videos online without disturbing anyone. However the T programme leaves him cut off as his hearing aid microphone is switched off. We shall ask to get his aids programmed for both the M and T settings and then we shall buy one of these.” Sue, mum to Alex (12) who is moderately deaf. To have conversations on their smartphone or mobile Along with mobile phones specifically designed for deaf people, many of the latest smartphones are hearing aid/ cochlear implant compatible and work well with the T programme. Look online for the technical specifications of your child’s phone. If it has an accessibility rating of T3 or T4 then it should work well on T. Look at the phone’s accessibility settings to set it up. “The phone is very useful and easy to use. The sound of calls was very good – I would be very happy to have this phone.” Harley (12) is moderately deaf and borrowed an Amplicomms M9000 Android Smartphone from our Technology Test Drive loan service. 0808 800 8880 •


To talk on your landline phone You’ll need a phone which is described as being ‘hearing aid compatible’ (this also means compatible with cochlear implants) – this means it has a loop built into the headset. Many of these phones are available including cordless models and ones with built-in answering machines. “Robert can hear well with this phone. Because it has the T programme it will work with all hearing aids so if the hospital changes his aids he’ll still be able to use it. It’s nice for him to be able to chat to friends and relatives on the phone – so we’ve bought one.” Jo, mum to Robert (14) who is profoundly deaf Loop system and has cochlear implants.

Using the T programme in public places Loop systems are often fitted in public buildings, such as theatres, cinemas, banks or shops. This symbol is displayed in places where a loop system is fitted. As soon as your child switches their hearing aid to the T programme they should hear the person’s voice clearly above any background noise – if it isn’t working then ask for the loop system to be turned on. • 0808 800 8880


How can I get the T programme set on my child’s hearing aids? All NHS hearing aids, and most cochlear implants, contain a telecoil which is the main part of the T programme. Some bone conduction hearing implants have the T programme but others might need a separate telecoil unit – your audiologist can tell you more. An audiologist will need to activate the T programme on your child’s aids or implants. However they may decide not to do this for young children. You can discuss with them when to get the T programme activated. Now it’s quite common for deaf children to be given a combined M and T programme instead of separate programmes. With the combined setting their aids or implants will automatically detect a loop system and switch to T by themselves. If your child has a separate T programme they will have to push a button on their aids or implants to activate it.

For more information and user reviews on these products, other helpful products and our Technology Test Drive loan service, go to

NDCS Families • Winter 2016


A year of local gro Here’s

a round-up of some of the exciting things our local groups got up to over the

Over 100 local groups across the UK give local families with a deaf child the chance to meet and get to know each other while enjoying social activities. They organise all kinds of events ranging from festive trips to summer days out by the sea.

The great outdoors We organised a residential weekend staying in wigwams on a local farm. The children had a great time and experienced some amazing things including witnessing lambs being born – they got to hold a lamb that was only one day old! Of course they also had the opportunity to meet and play with other deaf children – many of whom had never done this before. Sam, Fife Deaf Children’s Society Our summer school theme was ‘awesome animals’. During the week we visited a community garden and had a crazy day of pond dipping and frog chasing. We got close to exotic animals including snakes, lizards and spiders and learnt how to sign their names. We also had a trip to a farm where we got to ride on a tractor and race sheep. It was a fun week with awesome animals and awesome children! Amy, Peterborough Deaf Children’s Society Twelve families from our local group had a fantastic day out to Hunstanton. We started the day by visiting the local sea life centre, followed by a couple of hours playing on the beach. Pam, Northamptonshire Deaf Children’s Society 38

NDCS Families • Winter 2016

New skills for all We organised music therapy sessions as we hoped encouraging children to enjoy music and ‘hear it’ using multiple parts of their body, would introduce them to vital language skills. My daughter Meabh’s confidence has really grown – we are so thankful for the opportunity our local group has given her. Ciara, Sound Friends Kent Deaf Children’s Society began offering short courses in British Sign Language nearly 10 years ago. The courses are packed with signs relevant to young children and their daily lives. The whole family learns together and is encouraged to continue to use the signs at home. Johann, Kent Deaf Children’s Society We had a fabulous morning of pampering at ‘Beauty Rocks’. The eight girls had a ball, chatting and signing away whilst they had their nails painted, made their own natural face masks and tucked into the treats and mocktails. The therapist was fantastic with the girls and deaf-friendly, making sure she faced them when talking. By the end of the morning the girls were swapping numbers to meet again. Helen, Surrey Deaf Children’s Society

0808 800 8880 •


e past 12 months.

To find o u about lo t more cal grou and the ps location o f yo nearest group vi ur s it www.nd k / localgro ups.

A space for parents We ran weekly coffee afternoons to help bring families together. As well as giving deaf children the opportunity to meet, it gave parents a chance to talk, share experiences and get advice from each other. Liz, Swindon and North Wiltshire Deaf Children’s Society Local group Listen hEAR organised a webinar event on Auditory Verbal Therapy (AVT) where parents were linked to an expert in the field who lives in Canada. Here, they learnt some basic techniques for them to apply at home to help develop the listening and speaking skills of their children. The session was a brilliant introduction to AVT. I came away with some really practical tips such as trying to spend at least 15 minutes a day reading with my child and limiting their ‘screen time’. Paula, Listen hEAR

Supporting teenagers The young people from Carlisle and Eden Deaf Children’s Society went iceskating and got to watch a professional ice hockey match. Being away from their parents helped them develop some independence and get to know each other even better.

“I had a brilliant day.” Abigail (14), Carlisle and Eden Deaf Children’s Society North London Deaf Children’s Society partnered with the Royal Association for Deaf People (RAD) to organise three events aiming to improve the social skills, confidence and independence of deaf teenagers. This included a day of travel training and sightseeing in central London. • 0808 800 8880


Getting active We held a zorbing event which 40 members attended. We had two hours of fun in the sun, water zorbing on the lake and body zorbing, then a barbecue. It was a great way for families to socialise and share information in a relaxed and fun environment. Kate, Worcester Deaf Children’s Society Ability Wheelz Cycling Centre provides adapted bikes so children and adults with additional needs can enjoy cycling. We arranged a fun day in the park so the children (and parents) could have a go on a variety of bikes. They had a fab time! We finished the day off with a game of rounders. Lizzie, Oldham Deaf Children’s Society We held an event at Gravity Force (trampoline park) for the third time and as always, it was so much fun. The children ranged from four to 15 years and it was lovely to see the older ones looking after the younger ones. Jo, North Hampshire Deaf Children’s Society

And finally... some festive fun Brighton, Hove and West Sussex Deaf Children’s Society members had a special Christmas treat when they were invited on board the Bluebell Railway Santa Express. It was a brilliant day out. The children’s faces lit up when Santa came into the carriage and gave them each a present. It really captured the spirit of Christmas. Linda, Brighton, Hove and West Sussex Deaf Children’s Society NDCS Families • Winter 2016



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

Daisy and Ted’s Awesome Adventures Written and illustrated by Alex Naidoo National Deaf Children’s Society, 2016 0–4


We think characters in stories should be as diverse as the people who read them, but only a handful of children’s books feature a deaf character. We’re working to change that by publishing our first ever book. Daisy and Ted’s Awesome Adventures is an exciting story, aimed at four to seven year olds, that follows Daisy, a deaf girl who wears a hearing aid, on imaginative adventures with her new friend Ted. In this colourful tale where nothing limits the imagination, they encounter pirates, wizards and princes and travel through time. These adventures are all brought to life by vibrant and colourful illustrations by the book’s author, Alex Naidoo. As a parent to a young reader I look for adventure, great visual art and a story that has a connection to our own way of life in a good storybook. The story of meeting different characters who have different encounters and travelling through time is simple but effective. The two friends, Daisy and Ted, work well with each other and the story clearly shows how important conversation and feeling included is to a deaf child. Daisy and Ted’s Awesome Adventures is full of warmth, the characters they meet are all recognisable and relevant to an adventure story and the artwork is colourful and clear. Cerys is seven and finds the language simple and easy to read, but I think children aged 3–10 should enjoy the story. Mark, dad to Cerys (7), who wears bilateral cochlear implants. Cerys


NDCS Families • Winter 2016

This is a story about a deaf little girl called Daisy and her new friend Ted, incorporating facts and tips for communicating with a deaf child. The story illustrates different ways in which you can support Daisy using a fun adventure for each one. Megan enjoyed the story and looking at the pictures of Daisy with ears like hers. Whilst sharing this story Megan and I had a conversation about her friends and how they can help her if she is struggling to hear. I think this book would be useful for all children within the age range to help them understand deafness. It would be particularly good to read with children in a classroom or group environment to support friendship building and encourage children to ask questions if there is anything they don’t understand about deafness. Sherrie, mum to Megan (4), who is Megan profoundly deaf.

0808 800 8880 •


Key In this issue we’re reviewing resources which might be particularly suitable for the following ages:




Echo Come Home By Megan Rix Penguin books, January 2016 5–10


This is a story about 11-year-old Jake, who is deaf and wears hearing aids, getting a hearing dog called Echo and the difference the dog makes to his life. It also talks about the difficulties he experiences including friendships, missing things in class, isolation and fear of sleeping in case the fire alarm goes off and he doesn’t hear it – all things many deaf children experience. Jake is separated from Echo and much of the story is the dog’s adventure to get home to his owner. We read it as Zach, my nine-year-old son, is deaf and has a hearing dog (coincidentally also called Echo) and there were so many parts he could relate to, but he also loved that it was an adventure story. The author herself is deaf. It’s a great story for upper primary to early secondary age children, or anyone who loves dogs! I’ve recommended it to many adults, and they have loved reading it too. It’s also a great insight for my son’s friends to learn about some of the difficulties he has in being deaf without him having to tell them. Kirsty, mum to Zach (9) and Miriam (5). Zach has enlarged vestibular aqueduct syndrome and has degenerative hearing loss and wears bilateral cochlear implants. Zach • 0808 800 8880


What’s new from us? Understandi child’s hear ng your ing tests

A guide to the to find out the hearing and medical tests tha type, level and cause of dea t are used fness

Freephone 0808 800 8880 See for details of our opening hours and free interpreter service. JR0735 Understa

nding your

Q. If I send my child to private school what support can I expect from the local authority? A. We’re often told key factors for parents choosing to send their child to

a private school over a state-funded school are smaller class sizes and more opportunities for one-to-one or small group work. However, by choosing a private school the local authority (LA) no longer has a legal responsibility to provide services such as Teacher of the Deaf (ToD) support or equipment such as radio aids. That is unless the school is named in a statement of special educational needs or Education, Health and Care (EHC) plan as being the LA’s choice. The Equality Act (2010) (England, Wales and Scotland) requires all schools, including private schools, to make reasonable adjustments for disabled children. This includes a duty to provide additional services and equipment if needed. Parents will need to talk to the private school about whether it is reasonable or unreasonable (this often relates to cost) for the school to buy in advice from a ToD or to provide a radio aid. The costs of reasonable adjustments should never be passed on to parents. The relevant legislation in Northern Ireland is the Special Educational Needs and Disability (NI) Order 2005 (SENDO). Sometimes an agreement can be made between the LA and private school for some level of ToD input, but this is at the LA’s discretion. The school could possibly buy in services from the LA, ask them for advice on finding private ToD advice or try the British Association of Teachers of the Deaf (BATOD). They could also contact an organisation that offers consultancy work and technical support to schools for a fee, such as the Ewing Foundation. You can find more information on the Equality Act at educationcomplaint, and schools can look at our education resources at for extra information.

Share your experiences with others As a parent of a deaf child you’ve had lots of experiences which could really help others. There are so many ways that you can share your knowledge and support both us and other families. Find out how at 42

NDCS Families • Winter 2016

Child's Hearing

Tests (2016

Revision) AW.indd

Information for families




Understanding Your Child’s Hearing Tests: A guide to the hearing and medical tests that are used to find out the type, level and cause of deafness What type of information is it? A booklet that is available to download from uk/hearingtests or order from our Freephone Helpline. Who’s it for? Parents What’s it about? This resource explains the different types and levels of deafness and has information on the different tests that can check a child’s hearing. It explains about the ear and how it works, different types of deafness and audiograms (a chart on which your child’s hearing test results will be written). It also has information on the different medical tests or investigations that are used to help diagnose the cause of permanent deafness and a list of questions you might like to ask at your child’s next audiology appointment. You might also like: The childhood deafness section of our website for general support and information and our Going to the Hearing Clinic comic for your child, downloadable from resourcesforchildren. 0808 800 8880 •


My deaf child and getting sign language lessons

Family Sign Language

What type of information is it? A video that you can watch on our YouTube channel: Who’s it for? Parents of deaf children. What’s it about? One family’s story of how they got equipment and sign language lessons for their deaf son from their local council, and a social worker for deaf people talks about the support that could be available to families with a deaf child. You might also like: Know Your Rights: Getting support from your local council, available from localcouncil.

What type of information is it? Web and video content. Who’s it for? Families with a deaf child aged 0–5 years old. What’s it about? Information, tips and videos to support families to start using British Sign Language (BSL) together as part of their everyday routines. It also includes practical ideas for deaf-friendly activities that everyone can join in with, one-to-one activities to learn new signs with your child and a section to help tell exciting stories using BSL. You might also like: Our Helping Your Deaf Child to Develop Communication and Language booklet for parents with a newborn to two-year-old, downloadable from our website.

If you’ve registered on our 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 • 0808 800 8880

NDCS Families • Winter 2016


? n o s ’ t a h W

EE events coming FR c ti as nt fa f o ts lo e av We h f just a few. up and here’s a taster o Weekend programme for 11–18 year olds At our weekend events young people get involved in many sports and creative activities. Events are age-specific and targeted at a broad range of young people, with the chance to learn new skills and make friends while having lots of fun. Get Creative Weekend 3–5 March 2017, London (age 11–15) Multi-Activity Weekend 3–5 March 2017, Yorkshire and Humber (age 11–15)

Day events for 8–16 year olds Young people won’t have time to get bored on our one-day events – they’re packed full of creative activities. Get Creative Day 4 February 2017, North Wales and North West Get Creative Day 4 February 2017, Glasgow Get Creative Day 25 March 2017, Stratford-upon-Avon

Events for Families with Deaf Children aged 0–2 years Aimed at families who haven’t attended one of our events before, these two-day events are an opportunity to find out more about deafness, communication and learning through play and reading. They will be led by our experienced staff, and specialists will join us to share their knowledge and understanding. 25–26 February 2017, Northern Ireland 11–12 March 2017, Scotland

Starting School – Education rights and responsibilities This information day is ideal for families with a deaf child aged two to four years who want to learn more about how to support your child at school, how to enforce your rights and to share tips and experiences with other families with deaf children. 28 January 2017, Oxford 18 February 2017, South West

National Deaf Youth Football Tournament Our 10th National Deaf Youth Football Tournament is about raising awareness of deaf football, celebrating junior deaf football clubs and having fun. There will be one tournament this year in Northampton for teams across the UK to enter. Please keep an eye on our website for more details. 26 March 2017, Northampton

Interested in one of our events? We have an applications process for all our events for deaf children and young people, so it’s best to send your forms in as soon as you can. We’ll then get in touch to talk it over, before letting you know if your child has a place about eight weeks before the event. Go to for more information on the process, specific deadlines (typically 11 weeks before the event) and to download application forms.

We hold free events all over the UK for deaf children, young people and their families. Download our events calendar from 44

NDCS Families • Winter 2016

0808 800 8880 •

Become an


t n e r a p t r e p x e

Have you struggled to get the right support for your child? Sign up to our Expert Parent Programme to meet other parents and find out how to get the best from services supporting your child. Carlene is mum to Amber-Rose (15) who has a profound sensorineural hearing loss. Carlene gave advice on how the programme could be adapted for parents of deaf children and is now planning to become a parent trainer herself.

What is the Expert Parent Programme? It’s a one-day course where you can share experiences with other parents of deaf children and get advice on how to work with the services supporting your child. We’ve created the programme in partnership with the Council for Disabled Children, and alongside parents of deaf children, to make it relevant to your needs. After you’ve been on the programme you also have the option to attend further training to allow you to share your knowledge with other parents by leading future events. • 0808 800 8880


The Expert Parent Programme is a chance to meet other parents with deaf children and to learn useful practical advice. I went along to a pilot course in the summer, run by the Council for Disabled Children, who originally developed the course. We talked about how the programme could be made more ‘deafspecific’ and in the process about what we’ve had to battle for. We focused mainly on deaf-friendly classrooms, educating schools and how to get medical access. I found it interesting to hear other people’s experiences and afterwards I felt more empowered to argue for provision for my child’s needs. I’m also a SENDCO (special educational needs and disability coordinator) and I’m always keen to develop my knowledge to pass on to others. Since the course, I’ve been able to advise parents – especially about how to get an Education, Health and Care plan. Although I’ve worked as a SENDCO for many years, having a deaf child has given me a completely new perspective. I had no idea how much parents have to battle for access to medical professionals or how to educate school staff. It would’ve been so useful to have a course like this when I first found out my daughter was deaf. We were living abroad and knew no deaf people! It would have helped us emotionally and helped us find out more about the road ahead and what we could do to get our daughter more support. I’m going to a refresher course soon where I’m looking forward to revisiting what I’ve already learned. Hopefully I can take some materials away to share with other parents. After that I’m planning to become a parent trainer, helping to run the Expert Parent Programme for other parents. I would say to anyone thinking about attending the course to just go for it! Finding the time is sometimes difficult but it’s worth it.

The Expert Parent Programme is running courses across the UK. To find one near you, go to NDCS Families • Winter 2016


When I’m a

grown-up Do you ever wonder what your deaf child will do when they grow up? Deaf people share their experiences of the world of work, including how their employers and colleagues adapt to their needs. I’m an antiques dealer because… I get to meet lots of weird and wonderful people and I love finding quality items. I buy and sell antiques and collectables online, at fairs and at antique centres. I was a CEO at a Deaf organisation for 10 years and decided I needed a change in direction. I now work predominantly with hearing people, which was a bit of a shock at first, but Access to Work has been a huge help. I’m profoundly deaf after having had meningitis and usually communicate in British Sign Language. I prefer to have a communicator with me when meeting people, and trying to follow very fast auctions is impossible, so I either have communication support or I bid online. I’m also a volunteer tour guide for deaf people at the Richard III Centre in Leicester. After 30 years of a nine-to-five job I’m now doing something I adore, and that to me is a big achievement. Lesley Kiddell-Spencer

I’m a photographer because… I love travelling, meeting new people and discovering the wonders of the world. I take photographs of things that inspire me: friends, family and strangers I meet along the way. I’m also commissioned by The Telegraph, Vogue and brands such as Adidas and Baby G. Thanks to very supportive parents and teachers, I’ve achieved GSCEs, A-levels and a photography degree. Throughout my education I had extra support. Never be afraid to ask for help – it goes a long way and will help you to meet your targets. I’m profoundly deaf and wear a cochlear implant. This has helped me do things I never thought I could, like listening to music in the car, talking on loud photography shoots and dancing in a club. I also use a hearing loop in cinemas and theatres. I’ve overcome many obstacles and accomplished things that most people wouldn’t have thought possible. I’m now on the road to achieving my dream job. Lily Bertrand-Webb 46

NDCS Families • Winter 2016


I’m a composer because… I love composing emotive music that takes people on a journey. I co-own a music production and sound design company, where we compose music for TV ads, films and TV series. Alongside the creative work I also manage the business admin. There have been lots of sacrifices, including working long hours. It’s a lifestyle choice but one I wouldn’t change because I’m lucky to be doing a job I’m passionate about. I’m completely deaf in one ear so I struggle to differentiate between stereo and mono. I sit side on to my speakers and will usually ask my business partner to double- check a mix. I accepted my deafness from an early age and have never let it stop me. Try to see obstacles as opportunities to view the world in a different way. Don’t let fear hold you back. Before setting up the company, I worked as a radio presenter and performer. My most recent achievement was the release of my first contemporary narrative piano album called Evolving Reflections. Aleah Morrison-Basu evolvingreflections

What does your child want to be when they grow up? For more information on careers, check out our section about life after leaving school at leavingschool.

0808 800 8880 •

For residential and day pupils aged 3 - 19 years

"Staff have very high expectations of what every pupil can achieve and this message is at heart of the school’s ethos. As a result, pupils in all groups make good progress academically, socially and emotionally." Ofsted, 2015

"My daughter is so much happier since she came to St John’s. She has achieved more than I thought possible. She has become the person she was meant to be." Parent

"Don’t worry about your shyness – you will gain confidence and achieve." Pupil

For more information or to arrange a visit please contact: Mandy Dowson, Parental Support Manager, St John’s School for the Deaf, Church Street, Boston Spa, West Yorkshire, LS23 6DF

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

Where every voice is heard and celebrated

After more than 70 years we have never lost sight of...

...the importance of learning and reaching one's potential. For over 70 years Mary Hare has continued to develop ground breaking programmes using the latest technology to ensure the highest possible standards of educating deaf children. If you feature in the archive image we would love to hear from you. For more information or to arrange an individual visit, please contact Debbie Benson: ( or 01635 244215) or visit our website

Families magazine, issue 43 (winter 2016)  
Families magazine, issue 43 (winter 2016)  

The new winter issue is packed with stories from families and information about childhood deafness including: • why parents Melissa and Mar...