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Spring Winter 2016 2014 • Issue 40 35

Special

40

th

issue!

towards a world without barriers...

Briar’s surprise How her dad showed his support

towards a world


I am proud that this year both our education and care inspections described Hamilton Lodge as “Good”. Our highly qualified and motivated specialist teachers, care and support staff have had their commitment and work recognised as “Good” by Ofsted. We think you will be impressed too. We educate deaf children aged from 5 to 19 in the heart of the city of Brighton. We offer residential and nonresidential education. You can contact me by email david.couch@hamiltonlsc.co.uk or by telephone 01273 682362 to discuss your child’s needs and arrange a visit. Why not come and see for yourself what a good education for deaf children looks like? David Couch, Principal

FREE ENTRY AND OPEN TO ALL

Save the date of our ANNUAL SUMMER FETE AND BIKE RIDE in your diary now – 11th June 2016 and email with enquiries to emma.daniel@hamiltonlsc.co.uk

“Leaders rightly pay close attention to pupils’ well-being and emotional and physical health. Some pupils arrive at the school, after damaging experiences in their previous education settings, with a poor sense of self-worth and lack of confidence. Staff do all that they can to support pupils effectively and ensure that they get back on track to making progress in lessons and feeling more positive about themselves. It is notable that pupils make quick gains in their learning and self-esteem following their admission to the school. Pupils who stay on into the post-16 provision achieve good results in public examinations.” Ofsted, 2015

HAMILTON LODGE SCHOOL & COLLEGE EDUCATION & CARE FOR DEAF STUDENTS FROM PRIMARY TO F.E.

HAMILTON LODGE, WALPOLE ROAD, BRIGHTON, EAST SUSSEX BN2 0LS

Telephone: 01273 682362 Fax 01273 695742 Minicom: 01273 682362 Email: admin@hamiltonlsc.co.uk www.hamiltonls.co.uk

@hamiltonlodge

HamiltonLodgeSC

hamiltonbrighton

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


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17 Superstar siblings

More choices ahead for Hayley

Hello...

34 The role of a Teacher of the Deaf

Welcome to the 40th issue of Families magazine. We believe the most important influence on a deaf child’s life is their family and this special issue celebrates their role. From dad Tony being diagnosed deaf at the same time as his son Matthew (pages 27–29), Gareth going above and beyond to help daughter Briar feel less excluded by her deafness (pages 20–21), to parents Star and Rhodri explaining how they meet the needs of Xander, who is severely deaf in one ear, alongside those of their four other children (pages 18–19), we celebrate the impact of family support. Siblings can be an amazing help to deaf children, while sometimes receiving less attention themselves, and we pay tribute to them in a special Our Superstar feature on page 17. Grandparents also offer their advice on pages 30–31. Finally, we’d love to know what you think of this magazine and how we can make the next 40 issues even better! Please do complete either the survey that you received with this copy (if you’re reading in print) or the online version at www.surveymonkey.co.uk/r/ndcsmagazine and we’ll enter you into our prize draw to win a £25 Amazon or Love2shop voucher. Thank you – enjoy the 40th issue.

Karen Harlow, Editor email: magazine@ndcs.org.uk

Contents Spring 2016 • Issue 40

NDCS

4 News & views 7 Comment 8 Campaigning 10 Fundraising

Children, young people and families

13 Share & support 15 Sounding off! 17 Our superstar – sibling special 18 Early years Never a dull moment 20 Primary years COVER Believe in Briar 22 Transition years Punching through barriers 24 Young people Looking to the future 27 Additional needs Learning to cope 30 How do I...? ...support my grandchild?

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

Role models

46 When I’m a grown-up

NDCS depends almost entirely on generous support from individuals and organisations. The public is responsible for 95% of our income, and without this we wouldn’t be able to support families of deaf children and young people. See pages 10–11 for more information on supporting NDCS. Publisher: Emma Aldridge • Editor: Karen Harlow • Designer: Alexandra Jordan • Production Manager: Phillip Barros • Distribution: Maria Piazza Advertising sales: Anne Marie Fox, Landmark Publishing Services, 7 Adam Street, London WC2N 6AA. Tel: 020 7520 9474. Email: amf@lps.co.uk Printing: Printed in the UK by The Magazine Printing Company www.magprint.co.uk NDCS Families is published by the National Deaf Children’s Society (NDCS). NDCS is a registered charity in England and Wales no. 1016532 and in Scotland no. SC040779. Opinions in this magazine do not necessarily reflect the policies and views of NDCS. NDCS supports families to make informed choices and no one option will work for all families. This magazine highlights some of these options. For further information, see our website or call our Freephone Helpline. Advertisements do not necessarily imply endorsement by NDCS. All rights reserved. Unauthorised reproduction in part or whole is prohibited without written permission. Photographs and artwork are accepted on the basis that NDCS and its agents do not accept liability for loss or damage to them.

www.ndcs.org.uk/livechat • 0808 800 8880

Get in touch NDCS Families, Ground Floor South, Castle House, 37–45 Paul Street, London EC2A 4LS Telephone: 020 7490 8656 (voice & text) Fax: 020 7251 5020 Email: magazine@ndcs.org.uk Website: www.ndcs.org.uk Freephone Helpline: 0808 800 8880 (v&t) NDCS Families • Spring 2016

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news & views

Follow NDCS on Twitter:

www.facebook.com/NDCS.UK www.facebook.com/NDCSScotland

Support our Raising the Bar winners We can’t wait to find out who’s won a place at the Raising the Bar 2016 masterclass! The lucky winners of our competition to find deaf music, dance and drama stars will have the chance to work with successful deaf performing arts professionals, Music and the Deaf, Deaf Man Dancing and Deafinitely Theatre to present the biggest showcase yet, taking place at the mac Birmingham on 19 June. If you’d like to come along and support our winners please visit www.ndcs. org.uk/ whatson for details of how to book tickets.

g n i s i Ra the

Can you help us improve our information resources?

 upportingthe S achievementof deafchildrenin primaryschools For teachers of children hearing impairment

with

Last year saw the launch of our parent review panel, and over the past 12 months members have looked at our web pages, leaflets, booklets, videos and factsheets to make sure they meet your needs and keep you well-informed about childhood deafness. They’ve really made a difference to resources old and new and we’re now looking for some new members to help make sure our information is the best it can be. If you’d like to join the panel for 2016, reviewing a resource each month by email or post, please contact carla.rose-hardman@ndcs.org.uk for more details. 24/12/2015 11:41

JR0599 Supporting Achievement

We’ve recently appointed a new Young People’s Advisory Board (YAB), made up of 18 fantastic deaf young people aged 11–18. The YAB will play an invaluable role in informing our work and shaping our services and support. We’re confident they’ll do a brilliant job and we’re really looking forward to working with them! Look out for more information on the new YAB members in the summer issue.

NDCS Families • Spring 2016

Speak one a up a time – gro an ns c conversatio eaf d be hard for ow. ll fo children to

NDCS on Facebook:

New Young People’s Advisory Board

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Deaf tip awareness t

www.twitter.com/NDCS_UK www.twitter.com/NDCS_Cymru www.twitter.com/NDCS_Scotland www.twitter.com/NDCS_NIreland

- Primary [2015 Edition]

AW.indd 1

We have a new Facebook page for the National Deaf Children’s Society in Scotland featuring news and info on Scotland events and much more. Why not drop by and let us know what you’re up to? We look forward to seeing you there at www.facebook.com/NDCSScotland.

0808 800 8880 • www.ndcs.org.uk


NEWS & VIEWS

> Never a dull moment

Running a household of five children with different needs page

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> Learning to cope

Joshua is the first deaf boxer to compete under the Amateur International Boxing Association page

Matthew’s family and hobbies have helped him cope with multiple conditions page

22

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Massive success for swimming star

Treat yourself and help us fundraise in Scotland To raise money and to help boost our profile among businesses in Scotland, we’re running some charity events: an afternoon tea and cinema event in March and a golf and spa day in June.

Our sports ambassador, Danielle Joyce, has been busy breaking more swimming world records! Danielle competed in the Deaf World Championships back in August, breaking yet another deaf world record by winning gold in the 100m backstroke. If that wasn’t impressive enough, in December Danielle broke three more deaf world records at the Scottish National Championships in the 50m and 100m freestyle and 100m backstroke. Danielle also won Scottish Women in Sport Sportswoman of the Year 2015. She was diagnosed as moderately deaf aged five and now at 19 her deafness is profound in her right ear and severe in her left. At the awards ceremony, Danielle said her deafness has made her who she is today and that she hoped winning the award would inspire other women to realise anything is possible. Danielle’s achievements have raised the profile of deaf swimming in the UK and she’s now focusing on winning gold at the 2017 Deaflympics in Turkey. Good luck Danielle!

Afternoon tea and cinema at the Blythswood Hotel, Glasgow 20 March, 12–4pm £40 (includes a glass of bubbly, afternoon tea, cinema, popcorn and entry to raffle) Golf and spa day at Mar Hall Hotel, Bishopston 12 June, 11am–late £110 per person (includes two course dinner and golf or spa option) For more information please contact Varshali Swadi on varshali.swadi@ndcs.org.uk.

> Punching barriers

Choosing a tablet or buying apps for a smartwatch? We’ve added some new information to our apps resource on how to choose a tablet device and how the main operating systems differ. You may find this useful if you’re thinking of buying a new smartphone or tablet. We’ve also added a new category: apps for smartwatches. This describes how a smartwatch could help your child and explains some key new apps which are specially designed for these new devices. To explore these new resources, go to www.ndcs.org.uk/apps.

www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

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Former YAB member wins award

Want to fundraise for us but not sure what to do? Visit www.ndcschallenges.org.uk to find a fundraising challenge for you. You could be leaping out of a plane or exploring exotic (and hot!) South Africa in 2016, all to help support our work.

Get on your bike We still have some charity places available in the Prudential RideLondon-Surrey 100, a 100-mile cycle ride around London and Surrey, taking place on 31 July. Commit to raising £550 and the place is yours. Email 02/06/2015 ndcschallenges@ndcs.org.uk to apply.

Love Families magazine?

11:45

Do you enjoy reading this magazine? Which articles do you like most? Do you read in print or online? Why? We need your feedback! Please take part in our survey and help us make Families magazine even better. Either return the survey included with your print copy of this magazine, if you receive one, or complete it online at www.surveymonkey.co.uk/r/ndcsmagazine and we’ll enter you into our prize draw to win a £25 Amazon or Love2shop voucher.

You may have read our article on Zanna MessengerJones’s success in forcing the government to delay plans to cut Disabled Students’ Allowances (DSAs) in the autumn issue of Families magazine. We’re delighted to report that for her tireless campaigning Zanna won the Inspirational Young Person Award at the Signature Annual Awards 2015. These awards recognise and celebrate the achievements of those whose efforts help deaf people to be part of their local community. Congratulations Zanna!

x

Elections in Wales The Welsh Assembly elections are just around the corner in May. You can check out our webpage on the election at www.ndcs.org.uk/ waleselection2016.

Our ambitions might be different, but...

Cued Speech makes spoken language visible

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

...we all need a good foundation to achieve them!

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

Mary Hare Sixth Form offers deaf students a wide range of A Levels, BTECs and tailor-made vocational courses. We are without doubt the biggest Sixth Form centre for deaf students in the UK.

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

For more detailed information about each course go to: www.maryhareschool.org.uk/sixth-form

T: 01803 832784 E: info@cuedspeech.co.uk W: cuedspeech.co.uk learntocue.co.uk Charity registered in England and Wales No 279523

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To arrange a visit please contact Natalie Ross on 01635 244215 or n.ross@maryhare.org.uk

Securing the future of deaf children and young people

NDCS Families • Spring 2016

0808 800 8880 • www.ndcs.org.uk Quater page Sxith Form ad.indd 1

21/01/2016 12:06:38


COMMENT

40 issues of Families magazine – what next?

“It’s excellent and very userfriendly. My eight-year-old daughter loves reading it too.” – Parent

We’re delighted to have delivered 40 issues of our magazine, but we need you to tell us what the next 40 should look like.

“It’s a wonderful magazine and so inclusive. So very, very helpful – thank you.” – Grandparent

“It’s been very helpful and informative in my work as a hearing support teaching assistant and I recommend it.” – Professional

These are some of the positive comments we’ve had about our magazine over the years and we hope that by providing information, presenting the experiences of families and showcasing what deaf children and young people can achieve with the right support, we’ve empowered you to support your child at every stage of their journey from diagnosis to independence. As you may be aware, last year we launched a digital version of Families magazine, allowing us to reach more people and keep costs down. If you haven’t already done so then have a look at www.ndcs.org.uk/magazine – although you may of course be reading that version now! We’re really proud of our magazine but we’re aware that the needs of deaf children and their families are constantly changing. We want to make sure our magazine represents your experiences and views and provides the information you need at the time you need it. To continue to do this, we need your feedback.

www.ndcs.org.uk/livechat • 0808 800 8880

We’d really appreciate it if you could please take the time to complete our short survey – which is included with hard copies of this magazine, or can be found at www.surveymonkey.co.uk/r/ndcsmagazine. The questions are just about the magazine and will be a big help in enabling us to develop it and continue to give you what you need – and as an added incentive, we’ll enter you into our prize draw to win a £25 Amazon or Love2shop voucher. Thank you in advance for your time and feedback.

Susan Daniels, Chief Executive

NDCS Families • Spring 2016

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Meet your MP At the general election last year more than 100 new MPs were elected to the House of Commons and we need to engage with as many of them as possible. We’re calling on parents and supporters to meet with their MPs and discuss the barriers that deaf children are still facing. Parent Altaf tells us why he met with his MP.

Last year I wanted to meet my MP Tulip Siddiq to discuss the issues affecting deaf children across the UK. I had a number of points I wanted to raise, both regarding the support my son receives and the problems other parents experience. I contacted Tulip’s office and she was happy to meet with me and find out about deaf children and what she could do to remove barriers. In October I went to meet Tulip at Westminster with some of the National Deaf Children’s Society’s Campaigns team. I discussed the issues I faced trying to get an Education, Heath and Care plan for my son and the reduction in speech and language therapy that many in my area had experienced. Tulip was very sympathetic to the issues I discussed and said that she would be happy to raise them in parliament and get in touch with the local authority to find out more about any changes to services. I learnt a lot about the things we can do as constituents to get our voice heard in parliament. It was a much less intimidating experience than I was worried about. The

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NDCS Families • Spring 2016

more people that talk to MPs about these matters the more weight they get in parliament.

 P Tulip Siddiq with Altaf, dad to Adam (10) M who is profoundly deaf. You can watch the full story on our YouTube channel. www.youtube.com/ndcswebteam

0808 800 8880 • www.ndcs.org.uk


CAMPAIGNING

Why should I meet my MP?

As your elected representatives, MPs work for you and have a responsibility to represent your views. By meeting your MP you can: • put pressure on your local authority to improve services • bring an issue to national attention • ask them to question government departments about their policies • encourage them to work with other MPs to change policy • ask them to raise your query in parliament and even put questions to the prime minister.

Where can I meet my MP? How can I contact my MP? Find out who your MP is and their contact details by visiting www.parliament.uk/mps-lords-andoffices/mps/ and send them an email stating who you are, where you live in their constituency and a rough outline of what you’d like to discuss. Here’s an example email you could adapt:

MPs hold weekly ‘surgeries’ where they meet their constituents and address their concerns. Surgeries are held at local town/village halls or at the MP’s local constituency office. If you live in London, like Altaf, your MP may ask to meet at Westminster or at Portcullis House next door.

…… MP, Dear Mr/Ms…………… / parent of a deaf child e th am I d an .. … … … My name is …………… ren’s Society living in ild Ch af De l na tio Na supporter of the your constituency. uss meet with you to disc to ity un rt po op e th I would appreciate day. ren face in the UK to ild ch af de rs ie rr ba e th ld local ow what time you ho kn e m t le se ea pl le u Could yo er it would be possib th he w or nd te at n ca surgeries so that I surgery hours? t you outside of your ee m to e tim a d fin to ting you. I look forward to mee Best wishes,

…………………………

www.ndcs.org.uk/livechat • 0808 800 8880

Interested in meeting your MP? If you’re interested in meeting your MP or would like any more information, please let us know at campaigns@ndcs.org.uk. NDCS Families • Spring 2016

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Join us 2–8 May

for Deaf k e e W s s e n Aware Could you help us raise awareness and funds to support deaf children? There are many fun and thrilling ways to get involved. Charlene held a Big Cake Bake in Deaf Awareness Week 2015 and raised £1,069.

Louisa took on a skydive, raising more than £600. Why did you want to fundraise for us? Our sons Calan (7) and Blair (3) have hearing loss and we’ve found the support and information from the National Deaf Children’s Society invaluable over the past few years.

Why did you choose a skydive? I wanted to mark turning 40 with something big and this was on my bucket list. Blair was going through the referral process for a cochlear implant and it seemed perfect that I could also help support a charity now very personal to us.

How was it? It was an amazing experience that I’ll never forget. I was more excited than nervous but the actual freefall was way beyond what I imagined. It literally took my breath away: as I fell out of the plane I opened my mouth and couldn’t close it due to the immense force of the air! The pressure really affected my ears and I found it difficult to hear for over a week – quite ironic as I was jumping for a deaf charity.

How did you fundraise? As well as sponsorship from friends and family I held an afternoon tea party at work.

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NDCS Families • Spring 2016

£600 could help two deaf young people attend one of our residential events.

Why did you want to fundraise for us? The help and support that the National Deaf Children’s Society gives, not just to deaf children, but to their whole families is outstanding. We have a son who’s deaf and as a family we’ve had so much information and amazing support.

Why did you choose a Big Cake Bake? I decided that the cake bake would be a fabulous idea, partly because I love baking but also because family and friends could join in too and having all of them there to support such a worthwhile charity was amazing!

What was the best bit? The joy of handing the cheque to the National Deaf Children’s Society was definitely my highlight.

How did you raise so much? We were given some amazing raffle prizes which raised a lot of money, as well as the cakes. It was a very successful day and I couldn’t be prouder of what we achieved.

Could you hold a Big Cake Bake at home, at school or in the office this Deaf Awareness Week? Visit www.ndcs.org.uk/ bigcakebake to sign up.


FUNDRAISING

e c a l p k r o w r You o o t s u t r o p p u can s Sass & Belle are a home and giftware brand offering a wide range of irresistible products and for the past five years they’ve donated 5% of all sales from their website www.sassandbelle.co.uk to us. In the last year they’ve held a cake sale at their head office and bucket collections at their stores during the busy Christmas period. Each project we work on together provides us with not only much needed income but also a platform to highlight the issues faced by deaf children and their families across the UK. We’re always looking to develop new relationships with companies so if you or any of your family works for an organisation that would like to support a charity why not suggest us?

1. Make a plan.

Top five fundraising tips

Your sponsorship total may seem a little daunting at first, so before you get started put together a plan of how you hope to raise the money through different fundraising activities.

2. Try a bit of self-publicity.

Use your local press to tell everyone about your fundraising. Contact us for template press releases which you can adapt and send to your local newspapers.

3. Who do you know?

How can you reach people beyond your social networks? If you have children, could they raise money through school? Could friends, family or colleagues donate a prize, a venue for a fundraising event such as a quiz night or perhaps just shake a collection tin? Do they have contacts that may be useful to you? www.ndcs.org.uk/livechat • 0808 800 8880

Visit www. sassandbelle.co.uk to help Sass & Belle help us – they’ll donate 5% of your purchase to support our work.

4. Give your supporters something back.

This could be as simple as offering balloons or stickers when out collecting or, on a larger scale, putting on an event. We have lots of materials including collection tins, stickers and balloons to help with your fundraising.

5. Could your employer help?

Ask them to match what you raise or make a donation. Use their notice board and intranet to advertise your fundraising or ask regular suppliers to donate raffle prizes. For more information on anything related to fundraising please contact us on ndcschallenges@ndcs.org.uk, 020 7014 1199 or visit www.ndcschallenges.org.uk. NDCS Families • Spring 2016

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

Specialist education and care tailored to every individual Rated ‘Good’ by Ofsted for School, College and Residential Care • Regular Open Days throughout the year • Bespoke visits available • Situated in the beautiful county of Devon and we’re closer than you think! Just over 2 hours from London and 2.5 hours from Birmingham • Excellent transport links; close to M5, Exeter Airport and National Rail Services

exeterdeafacademy.ac.uk @

admissions@exeterdeafacademy.ac.uk

01392 267029 Text 07624 808738 Exeter Royal Academy for Deaf Education 50 Topsham Road, Exeter, EX2 4NF

Registered Charity No. 1124523

@DeafAcademy /ExeterDeafAcademy

Scan the QR code to visit our website!


SHARE & SUPPORT

Share & support

Recent discussions: Microtia Radio aids insurance Switching audiology departments

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

Topic: wearing hearing aids

Topic: support from family and friends

Our three-year-old son was diagnosed as severely deaf nine weeks ago. He now has hearing aids and although he’s becoming more tolerant of them, it’s much harder than we ever imagined. <<<Facebook user>>>

Finding out your child is deaf can be a very difficult time and during those first few years friends and family can be unsure of how best to support parents. What really helped you? <<<National Deaf Children’s Society>>>

We struggled to get our children to keep their hearing aids in, but eventually it did click with them. It was like a switch had been flicked and they suddenly understood why we kept putting things in their ears! Persevere without pushing it too much (or worrying). He’ll get there. <<<Emma Suggitt>>> My son was the same age when he was diagnosed. He didn’t like his hearing aids at first, but they always resist at that age. Just stick with it. I was very careful about my facial expressions when I was talking to or looking at my son. If you look worried he will feel it too. <<<Facebook user>>> Our seven-month-old daughter keeps pulling her hearing aids out and we’ve found that hearing aid hats help. We got them from Etsy. www.etsy.com/ market/hearing_aid_hat <<<Facebook user>>>

The best way for family and friends to support you is to ask questions and not avoid the situation. Also, maybe learn a few signs and do their own research to understand deafness a bit more. <<<Facebook user>>> For me, the support of other parents – deaf and hearing – has been key. Learning how to respond to people who expect less of my son because he is deaf has taken longer. Having high expectations that all our children, deaf and hearing, can be the best they can be, and deserve to achieve whatever they want from life is so important. <<<Facebook user>>> Being deaf and a mother to deaf children, my advice would be don’t panic! Arrange a family deaf awareness day. Ask a Teacher of the Deaf to explain and help them understand deafness – it makes a world of difference. <<<Carol-Anne Govan>>>

We have tips on how to get children to wear their hearing aids at www.ndcs.org.uk/ wearinghearingaids. If your baby has just been identified as deaf have a look at www.ndcs.org.uk/baby. Joining your local group is a great way to meet other families. www.ndcs.org.uk/localgroups

www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

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Roger - hearing more of what you want

The Phonak Roger Pen is a discreet, lightweight device that can be used in a variety of situations such as the classroom, at home, social environments and to connect to a variety of multimedia devices. Its simplicity allows you to take it out of the box, pair it up and benefit from its functionalities. Our latest products can help your child connect to friends and family anytime, anywhere. To purchase these products please contact Connevans or Action on Hearing Loss. Or trial these products through the NDCS Technology Test Drive service, to find out more go to www.ndcs.org.uk/technology.


TIGER MOTHER

Sounding off! It looks like there could be changes ahead for Hayley as she’s struggling at college and hankering to be out at work...

Tuesday evening, on the stairs. “Mum, can I talk to you for a minute?” That’s very formal for Hayley, she normally just rabbits away in your ear at a hundred miles an hour whatever you’re doing, following you up the stairs or into the bathroom, out to empty the bin… An appointment request isn’t her style, it must be serious. I dump the washing basket down and sit on the stairs. Hayley plonks down beside me, her little face anxious, fidgeting with her fingernails. “What’s up my lovely?” “I don’t want to go to college any more. I hate all the written work, I can’t do it, it’s boring. I want to get an apprenticeship instead, then I can earn money as well as cook and not do the written stuff.” Once she starts, it pours out of her in a woeful, excitable torrent. I guess it was only a matter of time before the novelty wore off. College was great compared to school – Hayley enjoyed feeling grown-up, made new friends and loved the practical work on her hospitality and catering course. But, just like at school, she’s once again floundering. There’s too much theory and too many written assignments for Hayley’s liking, when all she wants to do is get in the kitchen and cook, and learn front of house in the college restaurants, which they do two days a week. I’m not really sure what to say. Instinctively I want to tell her to go for it, take up an apprenticeship – I’m sure she’d make a success of it. Hayley is very practical. She loves to work, has had various jobs since she was 14 and

www.ndcs.org.uk/livechat • 0808 800 8880

currently works weekends at a local farm amusement park in their cafés. And the girl has acquired a taste for earning wages… The problem is Hayley’s always struggled with academic/ abstract things. I don’t know how much is down to her deafness, or a combination of that and associated difficulties, including auditory memory problems and slow processing skills. I think back to the initial open day at college when they pointed out how much higher a salary people working in catering and hospitality get when they have a qualification, compared to those who don’t. I remind Hayley of this and try to encourage the longer term view. It’d be such a shame not to enter her chosen career as highly qualified as possible. At least if she just completes this first year and hopefully gets her English and maths grade Cs too, which I’m told she needs to attain the diploma, then maybe she can look for a decent apprenticeship. Hmm. I tell her to stick it out, just this first year at least. I agree to line up some maths tuition starting this month, from a tutor who helped a friend’s daughter. Just like school and GCSEs, it’s got to be head down, bite your lip and get through these next few months. Then move on if that’s what she wants and venture out into the world of work.

> Read Tiger Mother’s blog at: www.ndcs.org.uk/soundingoff For more information on your child’s options after leaving school see www.ndcs.org.uk/ leavingschool.

NDCS Families • Spring 2016

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Reg. Charity No. 1062507

We help them progress through 17 key stages.

Each year that a young deaf learner studies with us is a key stage in their personal development. So whether three or nineteen years old, we provide an environment where they know they can aim higher. And achieve more. We value both English and British Sign Language and are committed to the best level of support in the classroom and in residence. All of which helps our school to gain such high scores in the Value Added Performance Tables. For more details on day and residential learning contact us on 01332 362512 (voice/text). Royal School for the Deaf Derby, Ashbourne Road, Derby DE22 3BH. Email: enquiries@rsdd.org.uk

www.rsd-derby.org


SO PROUD!

We love featuring the achievements of deaf children but in this issue we want to celebrate some of the amazing hearing children out there who are brilliant at supporting their deaf brother or sister. Whether it’s helping to keep their hearing aids in or teaching others to be deaf aware – let’s hear it for the siblings!

Sibling special

Kaian is the most attentive big brother one could hope for. He is Seren’s biggest supporter and advocate, and her favourite playmate! Kaian helps her learn at home and ensures she is kept in the loop as to what’s happening. He has attended a British Sign Language (BSL) course with us and provides other children with deaf awareness training. He’s a compassionate and special boy and we love him very much. Jacky and Mark, parents to Kaian (8) and Seren (4) who is moderately deaf. Last January I gave birth to my second daughter and it was a shock that she was born profoundly deaf. My older daughter Kaydee now makes people more deaf aware and has joined me doing a BSL course until we hear about Enya’s cochlear implants. So proud of you Kaydee, you’re such a brilliant big sister and Mummy’s superstar, I love you. Georgina, mum to Kaydee (7) and Enya (1) who is profoundly deaf.

We found out KyronJae’s little brother Latham-James was profoundly deaf at three weeks old. Kyron is amazing with Latham. He’s educated his school teachers on cochlear implants and he’s always proud to tell people his little brother’s deaf. He’s definitely a superstar and I’m one proud mummy. Steff, mum to Kyron-Jae (7) and Latham-James (1) who is profoundly deaf.

www.ndcs.org.uk/livechat • 0808 800 8880

Finding out their younger sister was deaf didn’t faze our older kids at all. They’ve become her ears – they know what she wants and communicate for her. They explain that she’s deaf and you need to face her so she can see you talking, and they teach themselves sign and then teach Daisy. They’re so amazing with her. Bexi and Luke, parents to Bradley (11), Lilly-Mai (6) and Daisy (2) who is severely to profoundly deaf.

Aoife is sister to AimeeRose, who wears one hearing aid, and Eilish, who has just had bilateral cochlear implants. Aoife is an amazing wee girl. She uses some signs with her sisters, is kind and loving, and never complains when she has to stay with her grannies for us to attend appointments with her sisters. Briege and Connor, parents to AimeeRose (6) who is severely to profoundly deaf, Aoife (3), and Eilish (1) who is profoundly deaf.

My two daughters are amazing with our wee guy. He was diagnosed with hearing loss at birth and has had his hearing aids from six weeks. His little sister has helped Archie more than she will ever know, and his big sister has been his wee teacher and is always very protective. Vicky, mum to Katie (5), Archie (2) who is moderately to severely deaf and Emily (15 months).

When my son was born profoundly deaf last July, I was in tears (huge shock and no history, etc.) and my amazing then three-anda-half year old got me tissues and said everything was going to be OK and we could get him magic ears like nanny and told me to stop crying as she’d make me smile and started singing! How incredibly amazing at three-and-a-half. Kelly, mum to Evelyn (4) and Quinn (8 months) who is profoundly deaf.

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Xander

Laoise

Drew

Xiva

Chase

Never a dull moment

With five children aged one to 16, parents Star and Rhodri have learnt to make every minute count to keep the household running smoothly.

S

tar suspected her fourth child Xander, now three, had a hearing loss when he was only a few days old. “We took him to a fireworks display and he slept through the whole thing,” remembers Star. “Because I was working as a neonatal nurse alarm bells were ringing. He had a hearing test at 10 days old and there was no hearing on his left side. A follow-up test confirmed he was severely deaf in his left ear. It was a bit of a shock, but our gut feeling was that he had a problem.” Another shock came when Xander was six months old and had genetic testing. Star and Rhodri found out that Xander has Waardenburg syndrome – a collection of symptoms which can include deafness, as well as bright blue eyes, premature greying, a white forelock of hair, widely spaced eyes and patches of unpigmented skin. “We were worried sick because we hadn’t a clue what it was,” says Rhodri, “but after reading up about it we thought ‘Oh is that it?’” The family has since found out that Star, Laoise (16) and Chase (9) also have Waardenburg syndrome, although they don’t have any hearing problems or many of the other symptoms. 18

NDCS Families • Spring 2016

Laoise perfectly describes Xander as “just a normal kid” and Rhodri explains that there are “no special rules for Xander because he’s deaf ”. “We treat all five children with the same sensitivity,” adds Star. “Otherwise you start singling people out and it becomes something that gets resented.” However, friends and extended family did have a lot of questions about Xander’s hearing loss in the beginning. “We were met with an awful lot of ‘is there anything they can do about it? Will he grow out of it?’ I think there’s still a lot of ignorance about deafness.” “Xander is quite stubborn,” admits Star. And wearing his hearing aid is something Xander absolutely refuses to do. In spite of this, his speech, which is delayed, has come on in leaps and bounds since he started nursery school. “He’s also a lot better around other children and in noisy environments since nursery,” smiles Star, “and his confidence has come on as well. His key worker is partially deaf so she understands his needs and tends to keep the children calm and quiet. We’ve got a calm family environment in general, so his hearing loss doesn’t really affect him at home.” 0808 800 8880 • www.ndcs.org.uk


Having five children can be a challenge, especially with one deaf child and two boys with dyspraxia – Drew (13) and Chase. “They all have different needs and it’s trying to meet those different needs,” explains Star. “There’s never a dull moment,” adds Rhodri. The family, who like to go on camping holidays and get outdoors at weekends, try to stick to a tight schedule during the week. Star, who has just returned to work part-time after the birth of daughter Xiva last year, explains how a typical day looks when she doesn’t have help from their childminder. “I drive Drew, Chase and Xander to their different schools and come back and spend time with Xiva. Then at lunchtime I pick Xander up and do something with him while Xiva’s having a nap. I pick Chase up from school, come home, and that’s when I cook dinner and get some washing on. If the kids need help with homework they come to me at that point. As often as we can we sit around the table and have a family meal to catch up, then we start getting ready for bed. Xander goes to bed at 7.15pm, Chase at 8pm, Drew at 9pm and Laoise at 10pm. That way the older ones have a chance to talk to us without the younger ones hearing. One of the key things is having couple time when the younger ones have gone to bed. If we can put on a united front to the children then they can’t play us off against each other – that can be a problem in big families.” Star talks about the importance of having an organised diary. “If it isn’t in the diary it doesn’t get done – we are talking orthodontist, optician, audiology appointments… for five children. Plus I am my nan’s carer! Each child also has their own chores such as loading the dishwasher and taking the recycling out and Laoise picks Chase up from school a couple of days a week to give me more time with Xander.” Rhodri, who works long hours as a project manager in London, gets to see Xander for just a few minutes before his bedtime. The real quality time he gets to spend with the younger children is at the weekends. “I think it’s fairly safe to say that all the kids have as much attention as they need,” he says. “Xander doesn’t need more attention because he’s deaf.” “He’ll let you know if he hasn’t had enough attention!” adds Star. “We live with a big family every day so we don’t know if we’re any different from other families,” says Rhodri. “My advice for other large families is that organisation is key,” says Star. “And treating everyone the same,” concludes Rhodri.

“They all have different needs and it’s trying to meet those different needs.”

EARLY YEARS

04 to

NEW sprin chec g klist

years old

Your spring checklist for the pre-school years Apps for developing early skills The early years are vital for your child to develop important skills including language, communication, literacy and play. There are many different types of app which could benefit them in these areas. Have a look at our apps resource at www.ndcs.org.uk/apps to find out more.

Good acoustics at nursery

Nursery environments can be noisy and poor classroom acoustics can be challenging for children with glue ear or a permanent hearing loss. Poor acoustics can also make it difficult for deaf children to make best use of their hearing aids or cochlear implants. To find out how to improve listening environments visit www.ndcs.org.uk/ acoustics.

Choosing a primary school

Choosing a school for your deaf child is a big decision, and it’s important to think about their individual needs and whether a school will cater for them. On our website you’ll find plenty of information to help you in the decisionmaking process. www.ndcs.org.uk/ choosingaschool

If your child has unilateral deafness like Xander, you can find information at www.ndcs.org.uk/unilateral. Read mum Nasmin’s experience of being a mum of four and how the whole family have learnt to communicate with her daughter Aleeya, who is deaf. www.ndcs.org.uk/aleeya

www.ndcs.org.uk/livechat • 0808 800 8880

www.ndcs.org.uk/0-4

NDCS Families • Spring 2016

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Believe in Briar

Leanne and Gareth knew their daughter Briar, now nine, felt alone as the only one with a cochlear implant – then Gareth decided to do something special to boost her confidence.

L

eanne pops her head around her daughter Briar’s door and can’t help smiling as she watches her line up her teddies, bossing them into place. Each wears a cochlear implant, like their young owner. Then Briar gets to her dad Gareth, sat on the bed. But his implant is different – it’s a tattoo on his shaven head, exactly matching the one Briar wears. “Gareth did it so Briar wouldn’t feel alone,” says Leanne. “It’s made a big difference to her, she’s happier about her implant and more secure in her Deaf identity.” Born at just 35 weeks, Briar was very poorly. Her head was extremely large due to hydrocephalus, she had a cleft palate and hemifacial microsomia, where one side of her face was smaller. Her heart was on the right, upside down, and she had a hole in her spine. Doctors diagnosed Goldenhar syndrome, as well as deafness, and told the heartbroken couple that because of the extent of her problems, their little

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NDCS Families • Spring 2016

girl wouldn’t survive. “It was a very difficult time,” says Leanne. In Briar’s first two months, during which she had brain surgery to fit a shunt, doctors twice asked Leanne and Gareth to switch off her life support machine, but the couple refused to let their baby girl lose her battle. “They said she’d be in a vegetative state – never know us, never talk, see or walk,” says Leanne. “But she was our daughter, that’s all that mattered.” On oxygen, tube-fed because of her cleft palate, over the months and with multiple operations, gradually Briar grew stronger. Finally, days before her first birthday, she was allowed home. As Leanne and Gareth watched her in her bouncy chair, her little face broke

“She’s happier about her implant and more secure in her Deaf identity.”

into a smile. “It was incredible,” says Leanne. “It gave us hope.” Despite doctors’ rock bottom expectations, they did all they could to spur on Briar’s development. Briar’s deafness was the least of Leanne’s worries. She’d spent years working with the Deaf community and worked in many roles with deaf people including as a British Sign Language (BSL) interpreter. Leanne signed to Briar straightaway and was rewarded when at 18 months old she signed ‘Daddy’. “No one believed me,” says Leanne. “But I saw her trying with her right finger to touch her left index finger whilst curving her thumb downwards to create the letter ‘d’. She signed ‘Daddy, Daddy’ for the next six months!” Because of Briar’s large head and tiny body, she couldn’t hold up her head until she was two. Lagging behind all the usual milestones, gradually they saw she could focus and learn, and was 0808 800 8880 • www.ndcs.org.uk


picking up BSL quickly. By the age of three, after intensive occupational therapy, she started walking. The same year, she had a cochlear implant. “Her eyes lit up at the sound when they banged a toy boat on the table,” says Leanne. “She wouldn’t take off her ‘magic ear’, as she calls it, she still wears it 24/7. Then she said her first word, ‘Mummy’.” Briar continued to defy doctors with her progress. She started at a school for deaf children, aged three, and though behind developmentally, was very advanced with signing and clear speech. “She blossomed,” says Leanne. “The headteacher says she’s very bright. Briar’s vice-chair of the school council; she does love a meeting and likes to take notes – even at home! The school is excellent and has provided so many opportunities for her.” Briar made friends at school, but at home, with no other deaf children nearby, things weren’t so easy. “School’s an hour away, so at home, out playing she felt left out,” says Leanne. “I go everywhere – Brownies, church groups – to sign for her because she can’t hear well. No little girl wants that. She said she wished all the family had implants, so she wouldn’t feel different.” Last August, when Briar was scheduled for surgery to improve her cleft palate, Leanne and Gareth saw a photo on social media of a man in New Zealand with a cochlear implant tattoo. It was then Gareth knew what he was going to do. “It was hard seeing Briar unhappy, crying and saying she wished all our family were deaf and had implants like her,” says Gareth. “I decided I’d get the tattoo as a special present, so she wouldn’t be the only one. I sneaked in while she was asleep to remove her implant then photocopied it. When Briar saw the tattoo she was quite shocked. It was very emotional. She said, ‘We’re the same.’ She’s more confident now, she’s proud of her implant.” Now, as well as putting implants on her teddies and on her brother Flint (6), Briar loves pretending to change the battery on her dad’s implant. “Gareth wanted to give her a gift that meant something to her,” says Leanne. “It’s created a lot of attention around him and she feels proud and says, ‘That’s my dad – I’ve got an implant, I’m deaf.’ I’m so proud of Briar and of Gareth. He’s a very shy man and the tattoo means everyone’s looking at him. The love he has for his daughter has made him do this so she doesn’t feel she’s the only one with an implant. “I remember when the neurosurgeon saw Briar’s scans as a newborn and said the prognosis wasn’t good; I asked what we could do for her. He said, ‘Just believe in her’. We have and we’ve had our foot firmly on her backside ever since, pushing her, and she has exceeded everyone’s expectations.”

“She wished all our family were deaf and had implants like her.”

PRIMARY PRIMARY YEARS YEARS NEW sprin chec g klist

5 10 to

years old

Your spring checklist for the primary school years Appealing against a school placement decision If your child is going to secondary school next year and you’re not happy about the placement decision, bear in mind you have the right to appeal. Our factsheets can help you with the process. www.ndcs.org.uk/appeals

Fun apps for holidays We’ve put together a list of fun and accessible apps for deaf children, which could be great to use during school holidays and half terms. There are apps which can be used indoors, out and about, and on holiday abroad. www.ndcs.org.uk/apps

Preparing your child for a school trip School trips give your child the chance to be away from home, learn to be independent, and have fun with their friends. Have a look at our online tips about preparing your child for a school trip. www.ndcs.org.uk/ schooltrips

www.ndcs.org.uk/5-10

To read about other families with first-hand experience of Goldenhar syndrome go to www.goldenhar.org.uk.

www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

21


Meet Joshua (12) who was the first deaf boxer to compete under the Amateur International Boxing Association. Ketan

J

oshua and his big brother Ketan, 16, arrive at the boxing gym at 6pm and put their gloves on. It’s a cold evening, but two hours of training will warm them up. Coach Steve gathers all the boys into the ring for their two minute warm-up, and when the timer starts the boys begin moving around the ring, punching the air with determination. “Josh is treated as if he has no disability,” says dad Matt. “We don’t want to wrap him in cotton wool. I let him box, play football, anything. The boxing gym is one big happy family and anyone who walks through the door is accepted immediately. The coaches make it easier for Joshua by stamping on the floor when a match starts and coming between him and the opponent to signal it’s ending.” Joshua started boxing aged eight, following in Ketan’s footsteps. “We were told he wouldn’t be able to compete because he’s deaf,” says Matt. “Boxing can be quite old-school and cliquey; the rules were probably written a long time ago and no one revisited or questioned them. I didn’t think much of it, and later I heard the rules had been changed. When his coaches started to say Josh was ready for his first competition, I looked at the rules online and although it was difficult to find, it was in there that deaf people were now allowed to compete. I had to get Josh a medical and everyone at the club started saying I should get it done quickly because he might be the first deaf boxer to compete!” So when Joshua’s medical came back clear, his first competition was arranged for May 2015. Although the ban on deaf boxers was lifted in December 2013, no deaf boxers 22

NDCS Families • Spring 2016

had competed yet. Joshua took part in a ‘skills bout’ which is a contest for young boxers under the age of 15, where there isn’t a winner or loser. “I was excited to be the first deaf boxer and I did a few articles about it, which are on the internet,” remembers Joshua. “I wonder if this has started something, and boxing will become more inclusive,” says Matt. “We’d like to grow the club and push the boundaries of disability – we’re prepared to put the time in and then other clubs might too.”

“We were told he wouldn’t be able to compete.” Boxing has helped with Joshua’s confidence, which took a knock when he had to start wearing hearing aids. “He passed the newborn hearing screening and another hearing test, and his speech is perfect so we didn’t realise there was a problem,” explains Matt. “We only became concerned when we noticed that if you spoke to him from the back he wouldn’t acknowledge you at all. It was happening so much that we couldn’t just put it down to him being stubborn.” Joshua was diagnosed as severely deaf at age four and the specialists were amazed that he’d learnt to speak at all. He was given hearing aids soon after the diagnosis and started to hear new things for the first time. “I put the indicator on in the car and Josh said ‘Dad, what’s that noise?’”. However, he felt self-conscious wearing the hearing aids and it was a struggle for Matt and wife Catherine to get him to wear 0808 800 8880 • www.ndcs.org.uk


TRANSITION YEARS NEW sprin chec g klist

11 13 to

years old

Punching through barriers them at school. “We agreed to let him wear just one. Every morning he got up and thought about which one to wear. It turned out he was actually thinking about where he’d be sat in class and which side the least amount of people would see.” Things haven’t always been easy at school, although he’s never had a problem with bullying. “It took a long time for the school to accept that to get the most out of Josh there were certain things they had to do,” says Matt. “We still have problems with teachers shouting at him because he’s not got on with his work because he hasn’t heard what’s going on. We gave them a DVD which shows what deaf children actually hear in the classroom and slowly but surely they’re becoming more tolerant.” Due to confidence issues at school and the fact that Joshua had started to play football and the hearing aids were flopping off, when Joshua was six Matt and Catherine decided to go private and get him hearing aids which sit in the ear canal and are virtually invisible. “They transformed his life; he became a lot more confident,” says Matt. Although Joshua started boxing because of Ketan, he’s now a serious boxer in his own right. “Boxing keeps you fit and I’ve made loads of friends from different schools,” smiles Joshua. “I want to become a professional boxer and learn more about it. My favourite boxer is Manny Pacquiao; I look up to him because he’s funny, kind and a world class boxer. I’d say if deaf children are interested in boxing they should give it a go – they’ll find they’re no different to other people.”

To find a deaf-friendly activity for your child visit www.ndcs.org.uk/me2.

www.ndcs.org.uk/livechat • 0808 800 8880

Your spring checklist for the primary to secondary transition years

Deaf-friendly activities

If your child is going to start a new activity this spring, has the club signed our deaf-friendly pledge? Head to www.ndcs.org.uk/me2 for information on how they can include your child in all their activities. There’s also a list of clubs that have already signed up and a range of resources on how to make activities including arts and crafts, cricket and swimming deaffriendly.

Discounted entry to attractions

Have you heard about the Max Card? It provides children with additional needs and their families discounted entry to attractions throughout the United Kingdom. Your local city council will be able to tell you if you qualify for one. www.mymaxcard.co.uk

Buzz website for children and young people Has your child logged on to the Buzz website at www.buzz.org.uk? The Buzz is especially for deaf children and young people and has lots of games, stories and information. There are sections for 8–11 year olds and for 12–18 year olds.

www.ndcs.org.uk/11-13

NDCS Families • Spring 2016

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Looking to the future Deaf young people have many choices after leaving school including further education (sixth form or college), apprenticeships and traineeships, employment, travel or university, and it’s never too early to start thinking about these options. Tom (19) who has a moderate hearing loss and wears two hearing aids, worked as a parliamentary intern before going to university. I wanted to go to university partly, I’ll admit, to see what all the hype is about, but mainly because I find politics fascinating and want to learn as much as I possibly can. I decided to study PPE (philosophy, politics and economics) because I believe all three subjects are incredibly important, will be very interesting to learn about and will mean that I learn lots of transferable skills that will apply to virtually any job. In a way choosing to study a PPE degree greatly helped with research for university as only about 20 universities in the country actually offer it as a course. I then whittled it down further by looking at the grade requirements. Then of course, it came down to what the universities offered outside of the courses; I paid particular attention to student satisfaction ratings and disability support departments.

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The internship I went on is called the Speaker’s Parliamentary Placements Scheme and is absolutely brilliant if you’re interested in politics. It lasts nine months and you work in the office of an MP from Monday to Thursday, and on Fridays you are rotated around the different departments in the House of Commons, which gives you an amazing insight into the running of parliament. I was very lucky to find out about this internship – beforehand I had just been planning to go off to university straight away, but in one of my final assemblies my head of sixth form mentioned the scheme and I applied for it thinking “What’s the worst that could happen?” I never actually imagined I would be selected. That was a big shock when I got the phone call! When I started the scheme what I was really looking forward to was just seeing how everything works in parliament. You always hear these stories about politicians taking long holidays over the summer or refusing to vote, but the reality is different. If you look at an MP’s diary they are busy from seven in the morning until nine at night. In terms of adjustments made for my disability very little was required but they covered all bases. In the induction days at the beginning of the scheme all the interns were given a deaf awareness course and we were all given certificates (even me!). Also, in case any issues came up they had a brilliant Diversity and Inclusion team who were on hand to help, so I was well looked after.

0808 800 8880 • www.ndcs.org.uk


YOUNG PEOPLE Now I’ve finished the internship and I’ve started at university. At the moment I’m just going to see how that goes to see what direction my life takes after that. The one thing I would say is: just go for it! Whatever it is you’re interested in, the worst that can happen is you don’t get it and you come away with experience for next time, but the best case scenario is you achieve it. You’ve got to be prepared to grab opportunities in life!

Did you know? • Schools and colleges should provide careers advice to your child which includes information about education options to help them make choices. Some young people will also have ‘transition meetings’ which are meetings with a teacher or careers adviser to discuss their plans. • Further education up to the age of 18 is free, and if your child has an Education, Health and Care (EHC) plan it’s free up to the age of 25. There are also some schemes which they can apply for to help with other costs such as travel, books and equipment. For more information on EHC plans, look at www.ndcs.org.uk/SEN. • If your child has a job, their employer has a legal duty to make ‘reasonable adjustments’ to make sure they’re meeting your child’s needs. Reasonable adjustments are made based on your child’s support needs and can include them being given specialist equipment, changing their working hours or providing communication support in meetings. • If employed, your child can apply for a government scheme called Access to Work, which can pay for support in the workplace like interpreters and notetakers or even deaf awareness training. Before they apply, they should think about what support they’ll need. There may be some forms of support they’ve never used before – such as a speech-to-text reporter – that might work well for them. Find more information at www.ndcs.org.uk/accesstowork.

For more information on the above and supporting your child with making choices about their future, have a look at www.ndcs.org.uk/leavingschool or download our factsheet Supporting Your Child (14 years+) in Making Choices About Their Education and Future Careers from www.ndcs.org. uk/publications. There are different versions of the factsheet for England, Northern Ireland, Scotland and Wales. The Buzz, our website for deaf young people, is the place for your child to find information on university, college, apprenticeships, work experience, work and jobs, technology, communication and much more, including a dedicated downloadable resource full of tips and info. Tell them to check it out at www.buzz.org.uk/ myfuture.

www.ndcs.org.uk/livechat • 0808 800 8880

NEW sprin chec g klist

14+

years

Your spring checklist for young people aged 14+ Transferring to adult audiology services

Some services specify an age between 16 and 21 to transfer but usually this will be flexible and your family should be involved in the decision about the right time for your child to transfer. For more information about transferring to adult audiology services visit www.ndcs.org.uk/adultaudiology.

Going to university?

If your child is thinking about going to university, you’ll find a wealth of information at www.ndcs.org.uk/ highereducation about choosing a course and support during the course. They may be able to claim Disabled Students’ Allowances (DSAs) to pay for some equipment and support costs but the Government has recently announced changes to this funding. Find out more at www.ndcs.org.uk/ dsa.

Technology Test Drive open to young people

Did you know that our Technology Test Drive (product loan service) is open to children and young people as well as their parents? We lend a whole range of products such as vibrating alarm clocks, radio aids, phones, TV listeners and more. Visit www.ndcs. org.uk/tech_drive to see the full range.

www.ndcs.org.uk/14plus

NDCS Families • Spring 2016

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Our 2016/17 Roadshow tour is on its way Last summer we unveiled our brand new Roadshow and we can’t wait to visit you during our 2016/17 tour. Our scheduled dates have changed so please have a look at our map to see where the Roadshow will be and contact us in plenty of time to book a visit for your school or event. You can view the map and download a booking request form from www.ndcs.org.uk/roadshow.

“The first thing I thought was that it was so colourful!”

We welcome requests from schools, colleges, local groups and special events and there’s lots of information on our website about the different workshops we can deliver and the requirements of hosting the Roadshow. For more information see www.ndcs.org.uk/roadshow or contact our Freephone Helpline. We look forward to seeing you.

Learn, grow and flourish

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

Frank Barnes School for Deaf Children 4 Wollstonecraft Street London N1C 4BT www.fbarnes.camden.sch.uk

Tel: 020 7391 7040 SMS: 07970 626 197 Fax: 020 7391 7048 admin@fbarnes.camden.sch.uk

Frank Barnes School for Deaf Children


ADDITIONAL NEEDS

Learning to cope Dad Tony was diagnosed as deaf at the same time as his son Matthew, now 10, who has additional needs including Tourette’s syndrome. This, along with his hobbies and support at school has helped Matthew to cope with his conditions.

www.ndcs.org.uk/livechat • 0808 800 8880

“I didn’t really grow up thinking that I couldn’t hear,” says Tony. “But I always failed a certain part of my hearing tests and I’d be told ‘It’s alright – come back next year and we’ll see if it’s improved.’ I went for yearly checkups and nothing got better or worse, but I managed.” Because of Tony’s experiences, he and wife Kim were relieved when Matthew passed his newborn hearing screening, but as he grew older they began to notice problems. Matthew didn’t seem to hear certain things and his speech wasn’t clear. Kim took him to sign language classes from age two to improve his communication and he also had speech and language therapy. > NDCS Families • Spring 2016

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“We just kept being told that it was about his speech because under perfect conditions – in a silent room with someone facing him – he could answer a question, but no one could understand his speech. Even as parents we couldn’t understand him,” says Kim. Matthew also began experiencing tics – involuntary motor movements and noises. “We knew something wasn’t right and that he was struggling and uncomfortable, but we didn’t know what it was,” says Kim. “Time and time again we were told he was fine but then that relief would last a few more months and then again we’d be questioning that something wasn’t right.” Then after Matthew had a hearing test in reception at age five, Kim received a call saying he needed an urgent audiology appointment, and there he was diagnosed with both moderate high frequency hearing loss and glue ear. Matthew needed a hearing aid for one ear and an 28

NDCS Families • Spring 2016

“He now has the chance to be able to achieve and have the same opportunities as other children his age.” operation to insert a grommet in the other. Although the grommet improved things, it wasn’t enough and he then received a second hearing aid. “I felt upset when we realised just how much the hearing aids helped and so how much he had struggled before, and I felt guilty he hadn’t had them earlier,” remembers Kim. “But thank goodness somebody was now listening to us and Matthew was going to get the help he needed.” “The audiologists started talking about family deafness and when I told them my history they both said ‘Can we test you?’” says Tony. “My test came back like Matthew’s – high frequency loss. I was asked if I wanted

hearing aids and I would probably have said, ‘I’ve gone 34 years without them, I’m alright.’ But it helped me thinking Matthew’s wearing them so why shouldn’t I wear them? And vice versa, he was thinking if Dad’s got them, it’s not all that bad, so we probably helped each other.” Then, after years of being told he would grow out of his tics, at seven Matthew finally got a referral to a neurologist who diagnosed him with Tourette’s syndrome. Managing this alongside his deafness and other conditions meant that Matthew sometimes found it difficult to cope. “Matthew becomes quite anxious a lot. He has hypermobility (meaning his joints have an unusually large range of movement), obsessive compulsive disorder and is severely dyslexic, and he gets fed up that he’s got all these things that he’s struggling with. The thing that bothers him most is his Tourette’s. He tics a lot and gets quite upset and distressed about it. He doesn’t want that to happen to him,” says Kim. “He went through a stage of turning in circles or touching the floor as he was walking and there have been times when he’s been doing that by the roadside and of course it’s unsafe.” The combination of his conditions makes communication difficult for Matthew. “It’s hard sometimes to know whether he’s not heard something, if he’s misheard it or he’s just not focused on it,” says Kim. “The advice was ‘you’ve got that and that, but we can’t really send you to a specialist because the other two conditions will suffer,’” adds Tony. “And they said they can’t perform the dyslexia test on someone with hearing problems.” “He can’t hear particular sounds anyway which is problematic,” Kim says. “And they can’t diagnose him because they don’t want him classified in just that one category because of his other needs, which is often what can happen at school.” It was clear Matthew needed more 0808 800 8880 • www.ndcs.org.uk


support and after phoning our Freephone Helpline the family was put in touch with Children and Families’ Support Officer Emma, who helped to get Matthew an Education, Health and Care plan. “Emma explained to us about deafness and what support other deaf children have needed,” says Kim. “One of the main reasons that Matthew is comfortable now is because of the Education, Health and Care plan. He has one-to-one support in the classroom and at dinnertime and he has pastoral care three times a week. He now has the chance to be able to achieve and have the same opportunities as other children his age.” Emma encouraged them to become part of their local deaf children’s society where Matthew, and his younger sister Isla (5) have been involved in events. Emma also introduced the family to Ability football where Matthew now plays for the Manchester United team. Matthew is the only hearing aid wearer in his year at school so his parents felt it was important that he mix with other children like him. “Our biggest worry initially was his communication and friendships and we’re really fortunate that through sports he manages to get involved and join in,” says Kim. “At school he’s had comments, which has made it quite difficult at times. He’s been called stupid and deaf with people saying ‘what?’ to him all the time. He’s got a very good group of friends as well, but, like anybody probably would react, he’s not wanted to wear his hearing aids at times. By going to Ability football Matthew then was proud to wear his hearing aids because he was so proud and pleased to play for his team.” “There, everyone has hearing aids, implants, or some form of disability, so all of a sudden Matthew went from ‘why am I the only one like this?’ to ‘I’m part of a group here’,” adds Tony. “He’s been on the pitch at United – some people wait all their lives to do something like that. His swimming lessons are at Carrington United’s first team training ground. So he realises that, although he’s different in one way, there are other things that are good that happen to him that don’t happen to his friends.” Matthew also plays football for a mainstream team and has many other hobbies including playing the guitar, martial art Tang Soo Do, for which he has received numerous medals, Cubs and swimming. “Matthew needs to be kept busy so we do everything possible. His hobbies help him with his Tourette’s and help him socialise because he struggles with communication,” says Kim. He also gets a lot of support from Isla. “He needs to focus on just one thing at a time because he loses focus quite quickly and becomes distracted. Isla helps him with that and she’s really good at cheering him up. She knows if there’s something not right,” Kim says. “Matthew’s so much more confident and happier when he has routine and reassurance,” Kim concludes. “He’s never let his hearing or any of his disabilities stop him from achieving and he’s always willing to put that extra effort in to be able to do what his friends can do or achieve whatever goal he has set. He’s an amazing little boy.”

For more information about Tourette’s syndrome visit www.tourettes-action.org.uk. To find your nearest local group see www.ndcs.org.uk/findalocalgroup or have a look at www.ndcs.org.uk/me2 to find deaf-friendly activities in your area.

www.ndcs.org.uk/livechat • 0808 800 8880

ADDITIONAL NEEDS

More information on additional needs Family stories

We have a selection of stories from previous magazines about deaf children with additional complex needs online at www.ndcs.org.uk/ACNstories.

Regular e-newsletter

Email families@ndcs.org.uk to sign up to our e-newsletter especially for families with deaf children with additional complex needs. Contact other families Get in touch with other families of deaf children with additional needs and share experiences and tips. Visit our online discussion forum: www.parentplace.org and our Facebook page: www.facebook. com/NDCSUK.

YouTube videos

Check out our YouTube playlist of helpful videos about deaf children with additional needs at www.youtube.com/ ndcswebteam.

Specialist activity providers

For information on organisations that provide activities for children with additional needs visit www.ndcs.org.uk/ specialistproviders.

Booklet

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

www.ndcs.org.uk/ additionalneeds If you’ve registered on our website www.ndcs.org.uk you can order or download publications: click Family Support and then Order and view our publications. Or contact our Freephone Helpline on 0808 800 8880 or email helpline@ndcs.org.uk. NDCS 2014 NDCSFamilies Families••Autumn Winter 2016 2015 NDCS Families Spring

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How do I... …support my grandchild?

?

The relationship a child has with a grandparent is a special one and they can play an important role in a deaf child’s life. Here, four grandparents share their experiences. Susan is grandmother to Annabel (6) and James (3). Annabel has a moderate hearing loss and wears hearing aids.

Annabel passed the newborn hearing screening but was late speaking and was referred to audiology at two-and-a-half. It wasn’t until she was almost four that she was diagnosed as deaf and got her hearing aids. I was in the clinic waiting room looking after James when my son and daughter-in-law got the diagnosis and it was quite a shock for us all. We all thought she could hear more than she actually could. Annabel still has speech difficulties and she uses some sign language to support her speech intelligibility. Luckily her mum already knew sign language because she’s a speech and language therapist. I went to five sign language classes but Annabel often corrects my signs and signs to me that she is the teacher! I’ve helped out the family by looking after James when Annabel has had audiology appointments. I always tell Annabel how pretty her hearing aids are – she has pink ones at the moment – which makes her feel good about them. Make sure your time with your grandchild is fun and enjoyable. Let them do things they can do well and that builds their confidence – with Annabel Annabel it’s puzzles.

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NDCS Families • Spring 2016

Take small steps with things they find difficult and have patience with communication.

Keith is grandfather to Thomas (15) and James (12) who are profoundly deaf. Thomas has a cochlear implant and a hearing aid and James has two cochlear implants. When we discovered Thomas was deaf at nine months we were devastated as there was no previous deafness in either family. We found out that the cause of Thomas’s deafness is enlarged vestibular aqueduct syndrome. It was some time later that James was diagnosed with the same condition and we realised then that there was a genetic cause. We then felt more positive because we could see how two deaf brothers would bond. Over time we’ve learned that deafness is not the disability we originally thought it was.

Initially signing was important and we attended a British Sign Language (BSL) Level 1 course at our local college. But after implantation, speech became the boys’ main method of communication. We always discuss their deafness and speech and language issues with family and friends. For grandparents, deafness is a double whammy because you see the impact on your grandchild but also your child and their partner. Learn to understand when your child and their partner need a break from their deaf children, but also when to give them space and not get involved.

Thomas and James


HOW DO I...?

Christine is grandmother to Esme (4) and Eloise (1). Esme has a moderate to severe hearing loss and wears hearing aids.

When Esme was born her hearing loss wasn’t picked up and it was some time later that it was diagnosed. My reaction to the news of Esme’s deafness was that it won’t stop her from leading as normal a life as possible; she is a remarkably bright little girl with a determination that astounds me. I love to spend time with Esme and until she started school last September I took her swimming once a week and to the park, shopping, etc. Esme has additional needs and so it was decided that Makaton would be better for her than BSL. I’ve done a basic Makaton course and recently started the next level. Makaton is a fantastic way to communicate with Esme and I would encourage any grandparent to learn it. I look forward to learning sign language alongside Esme and watching Eloise learn too.

Jackie is grandmother to Callum (7) and twins Lily and Liam (6). Callum has a mild hearing loss and wears one hearing aid. When Callum was diagnosed with glue ear at age five we didn’t know anything about hearing loss. We had to understand that having to concentrate harder made him tired and it wasn’t that he was grumpy and didn’t want to get involved. We now make sure he gets space to do things on his own without any background noise. The twins can be loud so we explained Callum’s hearing loss to them. They sometimes need a reminder! We also remind extended family members to tap Callum on the shoulder, face him when they’re speaking to him and be understanding if they think he’s ignoring them. We let Callum take charge of his hearing aid – he decides when to wear it – rather than it being something

There are more tips for grandparents of deaf children at www.ndcs.org.uk/grandparents. To find out how to communicate with your deaf child or grandchild visit www.ndcs.org.uk/communication. Information about sign language classes in your area should be available in your Local Offer. Find out more about your Local Offer at www.ndcs.org.uk/SEN.

www.ndcs.org.uk/livechat • 0808 800 8880

we force on him. He always wears his hearing aid at school but sometimes decides to have a break at weekends, depending on what activities we have planned. I take Callum to his swimming lessons and I saw that he didn’t always notice when the instructor was speaking to him or the class. I spoke to the instructor to explain how to include him. She only needed to make small changes such as waving in his direction to get his attention, making sure he’s watching when she speaks, and crouching down to his level to give more detailed instructions.

Jackie and Callum

Join our family panel Next time in Families magazine:

“How do I… support my child’s school to understand their deafness?” If you have any tips, advice or suggestions to share, get in touch at magazine@ndcs.org.uk.

NDCS NDCS Families Families •• Spring Spring 2016 2016

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Ask the

expert

ASK THE EXPERT

ie k c a J

Each issue a different professional shares their expert advice and gives information to help you support your child. This time Jackie Turner, notetaker at the University of Wolverhampton, shares her insights. What’s the role of a notetaker?

There are two types of notetaker – electronic and manual. I’m currently working as an electronic notetaker so I use laptops loaded with specialist software to provide a deaf student with a real-time detailed summary of what’s being said in a lecture. This is simultaneously transmitted wirelessly to the student’s laptop so they can sit wherever they like and read the notes as the lecture goes along. Copies of these notes are emailed at the end of the session. I tend to do electronic notetaking if a student’s hearing loss is profound or severe and they want to read the lecture in real time so they can keep up and join in if they want. I’ve also worked as a manual notetaker and was trained to take a comprehensive set of handwritten notes, including student comments, paying particular attention to key points. I annotated handouts and diagrams and accompanied students on field trips. For more practical lectures or when the student wants more summarised notes, they may request a manual notetaker.

What skills/qualifications do you need for your role? I have qualifications in both manual and electronic notetaking and deaf awareness, and I am a member of the ANP (Association of Notetaking

Professionals). I also have a Level 3 in British Sign Language (BSL) and train electronic notetakers within the university.

What types of deaf young people do you support? Generally I support students with a moderate to profound hearing loss. I’ve also worked alongside students with a hearing and sight loss and a hearing loss and dyslexia. I regularly ask students for their feedback to ensure the notes are in an appropriate format for them.

What does a typical day in your job look like?

I get to the office around 8am and am typically booked for two lectures a day lasting two to four hours each. If I’m working alongside another electronic notetaker we discuss who’s obtaining the preparation materials and equipment and then familiarise ourselves with the lecture content and create useful abbreviations in the specialist software. I also work with BSL interpreters and manual notetakers. We may discuss the best place to sit, appropriate break times and how best to support the students we’ve been booked for.

www.ndcs.org.uk/livechat • 0808 800 8880

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

The best part of my role is also the most challenging – familiarising myself with the new subject terminology and keeping up with what the lecturer is saying. I enjoy this aspect as it uses the skills and knowledge I’ve acquired over the years.

How does a deaf young person get support from a notetaker?

My notetaker role is influenced by a student’s Disabled Students’ Allowances (DSAs) assessment. At the University of Wolverhampton we have a team in the Student Enabling Centre that coordinates this support for eligible students. The student sends their timetable and they book the most appropriate support based on their assessment of need. I discuss notetaking requirements with each student so the most appropriate style of notes can be produced. The Government has recently announced that ordinary manual notetaker support for higher education students from England will no longer be funded by DSAs. However, they will continue to fund electronic notetakers and may fund manual notetakers who work with students with sensory impairments. To find out more visit www.ndcs. org.uk/DSA.

T o see videos of other professionals who may support your child, go to www.ndcs.org.uk/whowillhelp.

NDCS Families • Spring 2016

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The role of the Teacher of the Deaf

Parents often ask us what to expect from a Teacher of the Deaf, so here we answer some of your most frequently asked questions.

• supporting effective use and maintenance of hearing equipment

A  teacher who is fully qualified to teach in mainstream schools and has an extra qualification in teaching deaf children, and specialist knowledge and expertise on how to make sure deaf children achieve good outcomes. Because deafness is relatively uncommon, most parents, mainstream teachers and other education professionals are unlikely to have this knowledge, and so a Teacher of the Deaf plays an important role.

• teaching individuals/small groups

• contributing to statutory assessments such as for an Education, Health and Care plan (England), statement of special educational needs (Wales and Northern Ireland) or coordinated support plan (Scotland)

• carrying out specialist assessments and helping to monitor and review your child’s progress and the effectiveness of the support they receive

 teacher can be a Teacher of the Deaf without A the extra qualification for up to three years, while they study for the mandatory qualification (MQ) in hearing impairment.

• advising on special arrangements for exams

• liaising with other professionals involved with your child.

I n England, the Government has drawn up a specification of what it expects trainee Teachers of the Deaf to have learnt before they qualify. You can find this online at www.gov.uk/guidance/ mandatory-qualifications-specialist-teachers.

Q What is a Teacher of the Deaf? A

T eachers of the Deaf may work in a special school or a resource provision. Many, however, work in a peripatetic role, meaning they’re employed by the council and go out to visit families and schools in their area.

Q What should I expect my Teacher of

Q Where can I find information about

A

A

Teachers of the Deaf in my area?

the Deaf to do?

34

T heir responsibilities will vary depending on where the Teacher of the Deaf is based, but include:

• visiting your pre-school child at home and advising on language and communication development

• providing deaf awareness training to school staff, as well as more specific training, advice and support to help them meet your child’s needs

• assessing the acoustic environment in your child’s school/nursery and advising on improvements, including technology, to make it more deaf-friendly NDCS Families • Spring 2016

T his information should be available from your council. I n England, this should be included in your council’s Local Offer. Local authorities have to publish their Local Offer online, setting out the support available to children and young people with special educational needs and disabilities in their area, across education, health and social care. This should include the contact details of your local hearing impairment service or sensory support service (terms vary).

0808 800 8880 • www.ndcs.org.uk


THE SCHOOL YEAR

Q Do all deaf children get a Teacher of the

Deaf? If not, how do councils decide who gets what support?

A

Usually  a Teacher of the Deaf should contact you following diagnosis but families can also self-refer at any time.  ervices often consider factors such as level of hearing loss, S development of language and communication skills and wider support available to decide the level of support your child should receive.

 any services use the framework developed by the National M Sensory Impairment Partnership (NatSIP), called Eligibility Framework for Scoring Support Levels. You can download this from www.natsip.org.uk. You have to join NatSip to get the framework but it’s simple and free to register.

 hildren with a mild hearing loss tend to be less likely to get C support from a Teacher of the Deaf, even though research shows mild hearing loss can have a significant impact on how well they do.

Q How will I know if my child’s Teacher of the Deaf is doing a good job?

A

A  Teacher of the Deaf should have high expectations of your child. Like all children, how well a deaf child is doing will vary, but they should at least be progressing at the same rate as other children of the same ability. A good Teacher of the Deaf should give you regular updates on whether your child is progressing as expected and what’s being done if not.  emember Teachers of the Deaf don’t usually work in isolation R and the support you get from the school, for example, will also have a big impact. However, Teachers of the Deaf do have an overarching responsibility towards deaf children and to work with mainstream teachers.

Q What should I do if my child isn’t getting

enough support from a Teacher of the Deaf or if the support isn’t good enough?

A

NEW sprin chec g klist

Supporting your child’s education this spring

Moving to another school or college this September (England, Wales and Northern Ireland)

If your child has a statement or Education, Health and Care (EHC) plan and is due to move to another school in September, the local authority must have issued a new statement/EHC plan naming the new school by 15 February. But for young people moving to a further education (FE) college (England only), the deadline is 31 March. You can find more information on EHC plans at www.ndcs.org.uk/ specialeducationalneeds.

Moving on from school

If your child will be leaving school in summer 2017, you should start discussing their options now, including university, careers and apprenticeships. Find out more at www.ndcs.org.uk/leavingschool.

Exam access arrangements

Is your child taking exams this spring and summer? Read how exam access arrangements can help deaf learners access exams fairly at www.ndcs.org.uk/exams.

Speak  to the Teacher of the Deaf directly first of all. Then if your child is at school, speak to the teacher responsible for special educational needs/additional learning needs. If you’re still not satisfied, you could contact the head of the sensory support service and/or your local authority.

F or more advice and support, contact our Freephone Helpline or read our factsheets on your education rights at www.ndcs.org.uk/educationcomplaint or on Local Offers at www.ndcs.org.uk/localofferfactsheet.

www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

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Smart talking Mobile phones have transformed communications for many deaf young people but some still struggle with voice calls. Here we suggest some useful accessories to help, and explain how your child can get the most from their smartphone. Make the most of your child’s mobile phone • Adjust the volume – check the volume setting and adjust it so that conversations sound loud but still clear for your child. • Use the speakerphone – this is a popular builtin feature. Experiment with the volume to get the best compromise between volume and clarity of speech. • Is it hearing aid compatible? – if your child has the T programme on their hearing aids or cochlear implants, a hearing aid compatible phone will give clearer sound and reduce background noise. Many of the latest phones, including iPhones and Samsung Galaxy models, are compatible with any hearing device that has the T programme set. Check the phone’s technical information for a T rating – a rating of T3 or T4 means it should work well with little or no interference. If in doubt, ask your child to set their hearing device to T and try having a phone conversation with them. • Know when someone is calling – if your child often misses calls, make sure their mobile is set to vibrating alert – some mobiles even have customisable vibrations. Flashing lights are a great way for them to see they have a call or text message – if these aren’t built into the accessibility features then download an app such as Flash Notification For All. You can also experiment with different ringtones until you find one your child can hear clearly. 36

NDCS Families • Spring 2016

0808 800 8880 • www.ndcs.org.uk


TECHNOLOGY What accessories or other products might help? Bluetooth neckloop or streamer – a Bluetooth neckloop picks up sound from a mobile using Bluetooth and sends it to your child’s hearing device via the T programme, which needs to be enabled. Streamers also use Bluetooth, but send signals digitally to your child’s hearing aids, cochlear implant or bone-anchored hearing aid (BAHA) so they will work without the T programme. Both products have a built-in microphone so your child can talk without having to hold the phone next to their mouth. Download deaf-friendly apps – there are apps that can increase the volume of a call to make it louder than the phone’s own volume controls, but these may reduce sound quality. Some mobiles and apps have sound equalisers, allowing you to alter the sound and make speech sound clearer. Try video calling – by using FaceTime, Skype or other video calling apps, your child could communicate by lip-reading or sign as part of their conversation.

There are also some new solutions on the market which could help. Amplicomms SA-40 mobile phone amplifier – this links to a mobile using Bluetooth. You hold it like a phone and it amplifies the sound of the call. It has a powerful speakerphone and also has a built-in loop so it’ll work well with your child’s hearing device using the T programme. Amplicomms PowerTel M9000 – an Android smartphone specially designed for people with a hearing loss. It has loud amplification, a loud ring and is hearing aid compatible. It also has all the features you’d expect from a modern, touchscreen smartphone. “The phone is very useful and easy to set up. The interface is very neat; it has two types of screen – an Android one and their own easy-to-use one. I liked the way I could easily access the phone, texting, camera and settings. The sound of calls was good. I would be very happy to have this phone.” Harley (11) who has a moderate hearing loss.

Phonak EasyCall – this attaches to a mobile phone and connects it wirelessly to Phonak hearing aids, so your child won’t need to hold their mobile to their ear or use a streamer. “It sticks on to the back of your phone and then connects to it by Bluetooth – so no wires, which is good. I found it really easy to hear the other person and could hear their voice in both my hearing aids. This is much better than normal, as I usually have to put my phone on to speaker to hear speech during a call. “I’d give this four out of five; the only thing I didn’t like was that it didn’t look like part of my phone. Overall I really liked it and I’d like one for my phone – I think I would use my phone more for voice calls.” Naimh (10) who is moderately deaf “It was simple to set up and use. I was able to communicate well by speaking and listening directly through the EasyCall. I thought it quite comfortable to use whilst attached to my phone as it fits in the palm of your hand. I was gutted the battery life wasn’t better, but I managed to keep it fully charged every night ready for the next day. I’d give this 9/10.” Daniel (19) who is profoundly deaf “I really liked the EasyCall and used it for calls to my mum instead of texting her. I was able to understand her loudly and clearly. However, outside or in the bus or car, it was difficult to understand her because of the loud noises around me – this might be due to my hearing aids. The EasyCall worked very well when using Skype and Facetime and other video calling networks like Viber. I’d love to have this amazing product as it made me hear sounds very clearly and it was easy to use.” Ammaar (17) who is profoundly deaf

For more information and user reviews of deaf-friendly mobile phone accessories, other helpful products and Adam our Technology Test Drive loan service, go to www.ndcs.org.uk/technology. www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

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Support for all – no matter what your child’s needs Three families with a deaf child who has additional needs tell us how their local group has welcomed them. Sue from Dorset Deaf Children’s Society has a 10-year-old son who is deaf and has mandibulofacial dysostosis with microcephaly.

I’m mum to Connor (11) and Tyler (10), as well as having three grown-up children from my first marriage. Tyler has a genetic condition called mandibulofacial dysostosis with microcephaly, which causes abnormalities of the head and face. As well as being deaf he has global development delay, which means everything is delayed, for example he didn’t walk until he was five-and-a-half. We became part of Dorset Deaf Children’s Society when Tyler was three. We had initially hoped he’d be able to get a cochlear implant but when we realised he wasn’t going to be able to access speech because of his condition we wanted him to meet other non-verbal children. Even though Tyler has additional needs other than being deaf, the group have always been so warm and welcoming. They think long and hard about what activities they can do to include everyone. For example, before Tyler could walk we went on a trip to a local farm and he had a great time seeing the animals and having a go on the bouncy castle. Tyler is also one of the only children who only signs, but the group make sure that a signer is present so that Tyler knows what’s going on. When I found out I had a deaf child I felt so isolated, but this group has offered me much needed support and comradery. It’s important to remember that even if your child has additional needs they’re also deaf, so being part of a local group can really help you out. Becoming involved in Dorset Deaf Children’s Society has helped Tyler understand that even though he is unique in his own way, he isn’t alone.

“When I found out I had a deaf child I felt so isolated, but this group has offered me much needed support.”

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NDCS Families • Spring 2016

0808 800 8880 • www.ndcs.org.uk


LOCAL GROUPS

Sarah from Wigan and Leigh Deaf Children’s Society has a seven-year-old daughter who is deaf and visually impaired.

My husband Richard and I have two girls, Teegan (9) and Lexie (7). Lexie is deaf and visually impaired. I first heard about Wigan and Leigh Deaf Children’s Society when I was in a local play area with the girls and a lady came over to me after noticing Lexie was deaf. She explained she was setting up a group for deaf children and invited us along to try it out. We attended the meeting and loved it. The best thing was seeing Lexie interacting with other deaf children. Before that she never had the chance to meet other deaf children and was always singled out as being different as she was the only deaf child in her playgroup. The group are always so good at making sure Lexie is included in everything we do. Every year we go to a pantomime and they reserve tickets for us right at the front to make sure Lexie will be able to see everything. We also went on a camping holiday recently and they made sure she could take part in all of the games they played, even with her visual impairment. Being part of the group has not only helped Lexie, but the whole family. Teegan enjoys taking part in the activities and it’s been lovely for her to get to meet other children who have deaf brothers and sisters. The group has been really good for me too. They often pass on helpful information which has made me more confident about dealing with deaf issues. They also help to fund adult British Sign Language (BSL) courses, so parents will be able to sign to their children. I’ve passed my Level 2 now. Everyone should try and get involved in a local group, it’s been brilliant!

Karen from Dudley Deaf Children’s Society has a 19-year-old son who is deaf and has attention deficit hyperactivity disorder (ADHD).

I have a daughter who’s 28, a 19-year-old son who is severely deaf and has ADHD, another daughter who’s 15 and also has ADHD and my youngest daughter, who’s adopted, is three. She has foetal alcohol syndrome. We’ve been part of Dudley Deaf Children’s Society for 17 years. The main reason I joined was to meet other mums. When I found out Anthony was deaf it was such a shock, I needed to relate to other parents who understood what we were going through. As well as helping me to deal with Anthony’s deafness the group helped me cope with his ADHD too. Throughout his childhood Anthony was always on the go. People would often say “oh he’s a lively one,” and I’d be looked at in public as a disgrace. With the group I was always accepted and not judged. It was great to be able to take part in all of the activities and to have others help take care of Anthony during the sessions. Being part of the group helped Anthony socialise with other children. He’s also been able to experience things he probably wouldn’t have otherwise – going to Disneyland Paris was definitely a highlight! Even now he’s still involved – he recently raised money for the group by helping out at a school fete. When you find out your child has a disability, no matter what it is, it knocks you for six. It’s really important you find people who can support you. A local group can help you meet other parents who understand what it’s like to have a child with disabilities – you don’t have to do it on your own. Don’t be scared to ask for help and advice – if your local group can’t help you directly they’ll help you find another way.

We have more information on local groups at www.ndcs.org.uk/localgroups. Find your nearest group at www.ndcs.org.uk/findalocalgroup. www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Spring 2016

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Reviews

Books and products for deaf children – tell us what you think! Isaac and Lilah – A story of similarities and differences By Liz Jones

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

Microtia UK, 2012 £5.50 0–4

Rebekah

NDCS Families • Spring 2016

0–4

5–10

11–13

14+

5–10

“This book was written for young children with microtia to help them see their little ears in a positive way, by looking at similarities and differences between themselves and others. The book is about Isaac, who’s three years old and was born with bilateral microtia and atresia. He has worn a bone conduction aid on a headband since he was six weeks old. It’s a fantastic resource for parents to read with their child – it uses clear, child-friendly language and photographs. It gives the child appropriate language to use with their peers when asked about their differences. Rebekah has read the book many times and has enjoyed learning about Isaac who is just like her. We’ve passed a copy of the book on to Rebekah’s school and it has been a fantastic resource for the professionals to have at hand.”

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

Isaac Gets his BAHAs Fitted! By Liz Jones Microtia UK, 2015 £2   0–4

5–10

“This book was written to help prepare children for BAHA (bone-anchored hearing aid) surgery. It’s written in a child-friendly way, with an easy-to-follow, step-bystep, positive account of the lead up to BAHA surgery and the surgery itself. There’s a picture of Isaac with every description, allowing children to prepare for their surgery in a very visual and easy-to-understand way. Liz Jones has gone into wonderful detail, giving an account from the moment Isaac starts to travel to the hospital, right through to ‘switch on’ day. At the back there is a place to include your own BAHA journey, with pages left blank for pictures of your child at each step.” Jennifer, mum to Rebekah (5) who has bilateral microtia with moderate hearing loss. 

0808 800 8880 • www.ndcs.org.uk


REVIEWS

BSL Alphabet Flash Cards Available from www.primarysign.com for free 0–4

5–10

“These fingerspelling flash cards are individual cards which each contain a letter, a diagram of the fingerspelling sign and a picture of an object beginning with that letter. Megan is confident with her spoken alphabet and is working on phonics, so we used the fingerspelling cards to support her with this. Megan enjoyed using a sign at the same time as sounding out the letter and found it very easy to copy the sign I was using. The picture on the card helped her understanding of the sound, and all the pictures were age-appropriate; we have previously used alphabet cards and puzzles with pictures that could be misinterpreted!

I would recommend this product, as Megan had a lot of fun learning to fingerspell with me. However, I would have preferred the product to have the letters in upper and lower case to help her recognise them, whereas these are only upper case.” Sherrie, mum to Megan (3) who is profoundly deaf and wears cochlear implants.

Sherrie and Megan

Charlie and the Dream By Paul W. Robinson ShieldCrest, 2015 £12.50 11–13

“Charlie and the Dream is a collection of five short detective stories about two newly-formed friends who accidentally become detectives. The characters, who are both deaf and go to a mainstream school, are Charlie and Joanne. Charlie is profoundly deaf and uses a cochlear implant whereas Joanne, who is autistic, uses hearing aids.

www.ndcs.org.uk/livechat • 0808 800 8880

14+

I can relate to Charlie and Joanne because I have enlarged vestibular aqueducts like Charlie, and wear hearing aids like Joanne. I feel the stories are very positive because there is never an indication that the characters struggle with communication. The author describes different methods of communication through sign language, lip-reading and verbal conversation. The stories are descriptive and fast-paced; they ultimately link together and the jigsaw is complete.

I highly recommend this book for any teenager who enjoys suspense and detective themes in the modern day Imogen setting, with moral issues relevant to today’s society.” Imogen (13) who has severe to profound hearing loss and uses hearing aids.

NDCSFamilies Families••Autumn Spring 2016 NDCS 2014

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Helpline

What do you think of our information?

Freephone 0808 800 8880 helpline@ndcs.org.uk www.ndcs.org.uk/livechat See www.ndcs.org.uk/helpline for details of our opening hours and free interpreter service. Q. My child’s turning 16 and will be claiming Personal Independence Payment (PIP). I don’t think he’s ready for managing the payments – can I receive them on his behalf? A. Yes, this is called being their ‘appointee’. However,

most deaf young people are able to and should receive the payments themselves. It’s an opportunity for them to learn how to manage money and become independent, and you can still support them with their claim without being an appointee. Also, a 16-year-old has the right to decide whether to manage their PIP claim unless it can be proven that they don’t have the mental capacity to make the decision. If you do apply to be an appointee, a representative from the Department for Work and Pensions (DWP) will visit and talk to you and your child. The purpose of the visit is to assess the capabilities of your child and decide whether they agree that you’re a suitable appointee. They would interview you both and help you fill out the appointee application form. They will start out with the assumption that your child is capable unless they demonstrate otherwise, and will focus on your child’s abilities to understand and function in making particular decisions. If DWP agrees with the application you’ll be sent Form BF57 which confirms you’ve been formally appointed but it’s important to remember your child can challenge this decision. DWP will monitor the situation to make sure it’s still suitable for you and your child. For more information about PIP claims visit www.ndcs.org.uk/pipclaim.

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NDCS Families • Spring 2016

Help your child stay safe and smart online (www.ndcs.org.uk/esafety) “This webpage provides tips on what parents can do to protect their child and encourage them to make smart choices online. It’s very thorough but all the content included is necessary and reflects what happens online at the moment. My top tips for online safety are: if you see something you don’t like always tell an adult, and only ever talk to someone you know and can check is really them.” Jack, Specialist Teaching Jack Assistant for Sensory Support “The information covers all the essential points in a simple format. There’s sufficient information for me considering I’m not an online person and am not familiar with computer jargon. I learnt about some websites and organisations to report concerns to which I was not aware of. Although Laaibah is still young she enjoys playing on her Kindle tablet and what I’ve found useful is using the Kindle FreeTime app so she can only spend a limited time on it. I’ve also downloaded YouTube Kids so she can access appropriate content for children.” Sameena, mum to Laaibah (6) and Aaira (1). Laaibah is profoundly deaf and has bilateral cochlear implants. We also have flyers for young people and lesson Sameena, plans for teachers available Laaibah at www.ndcs.org.uk/esafety. and Aaira

0808 800 8880 • www.ndcs.org.uk


NDCS RESOURCES

What’s new from us?

I ncluding Deaf Children with Additional Needs in Leisure Activities

What type of information is it? A factsheet available in print or to download from our website. Who’s it for? Leisure activity providers. What’s it about? Advice to support leisure organisations to better include deaf children with additional needs in their activities and services. You might also like: our Making Activities Deaf Friendly booklet.

Helping Your Deaf Child to Develop Communication and Language (0–2) What type of information is it? A booklet available in print or to download from our website. Who’s it for? Parents of deaf children aged 0–2. What’s it about? Ideas to help your child develop their language and communication skills. You might also like: the Communication section of our website. www.ndcs.org.uk/communication

Transition Meetings and How to Prepare for Them

What type of information is it? A factsheet available in print or to download from our website. Who’s it for? Deaf young people aged 13+. What’s it about? What ‘transition’ means, transition meetings and how to prepare for them, and why they’re important. You might also like: the Leaving School section of our website. www.ndcs.org.uk/leavingschool

Join NDCS Listens and help make our information even better Join NDCS Listens, our new network of people affected by childhood deafness who want to improve outcomes for deaf children. There are loads of ways you can get involved and help us improve our information, services and publications. We need reviewers, people to take part in surveys and focus groups, and families to share their stories or simply tell us what else you need. Go to www.ndcs.org.uk/ndcslistens for more information.

We need you!

www.ndcs.org.uk/livechat • 0808 800 8880

Personal passport templates (secondary and post-16) What type of information is it? An example of a personal passport available to download from our website. Who’s it for? Deaf young people and their parents. What’s it about? A personal passport is a document that provides information about your child’s needs. It can be given to any member of staff supporting your child and can be packed full of tips, such as how to communicate with your child. You might also like: the Special Educational Needs section of our website. www.ndcs.org.uk/sen

If you’ve registered on our website www.ndcs.org.uk you can order or download publications: click Family Support and then Order and view our publications. Or contact our Freephone Helpline on 0808 800 8880 (voice and text) or email helpline@ndcs. org.uk.

NDCS Families • Spring 2016

43


? n o s ’ t a h W

coming ts en ev E E FR c ti as nt fa We have lots of st a few of them. ju f o er st ta a s e’ er h d up, an First Time Away Weekends for 8–12 year olds First Time Away Weekends involve a one-night stay at an activity centre – they’re perfect for children who want to try out being independent for the first time. We offer a fun and friendly environment with lots of activities such as climbing, abseiling, orienteering and arts and crafts for children to try. 14–15 May, Perthshire 21–22 May, South Gloucestershire 25–26 June, Tunbridge Wells

Summer residential programme for 8–18 year olds We’re running a range of multi-activity summer programmes, where young people can achieve an award and get involved in life skills workshops. Our four-night residentials are targeted at young people aged 8–18 years, with events aimed at specific age groups. Explore the Outdoors, 25–29 July, Nr. Minehead, South West Mission Adventure England, 25–29 July, Kielder, Northumberland Mission Discovery, 1–5 August, Blairvadach, Dunbartonshire Mission Adventure Scotland, 1–5 August, Blairvadach, Dunbartonshire Multi-Activity, Mission Discovery and 16+ Transition, 8–12 August, Lichfield Mission Adventure Wales, 15–19 August, Nr. Monmouth Multi-Activity, Mission Discovery and 16+ Life Skills, 22–26 August, Ashford

Events application process We have an applications process for all our events for deaf children and young people. Once you’ve sent us your application form, we’ll contact you to discuss it. We’ll then confirm if your child has a place about eight weeks before the event. We advise you to send in your application forms as soon as possible. See www.ndcs.org.uk/events for more information on the application process, specific application deadlines (typically 11 weeks before the event) and to download application forms.

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NDCS Families • Spring 2016

Weekends for Families with Deaf Children aged 0–2 years Aimed at families who haven’t attended any of our events before, these non-residential weekends are an opportunity to get a better understanding of deafness, communication and learning through play and reading. Events are led by our experienced staff, with specialists joining us to share their knowledge and understanding. 9–10 April, Northern Ireland 16–17 April, Nottingham 21–22 May, Birmingham 2–3 July, Harrogate

Learning about Your Child’s Deafness A one-day event ideal for families with a deaf child aged three to 12 years who has been diagnosed in the last 18 months. This information day is aimed at families who haven’t attended any of our events before. It’s a safe and relaxed environment to meet other families, share stories and find out more about deafness, communication and audiology. 2 April, Luton 16 April, Bedford 4 June, Derby 9 July, Blackburn

Starting School – Education rights and responsibilities A one-day event ideal for families with a deaf child aged two to four years. This information day is aimed at families who want to learn more about how to support your deaf child at school and how to enforce you and your child’s rights. There’s also an opportunity to share tips and experiences with other families with deaf children. 23 April, London 7 May, Ashford 14 May, Edinburgh 21 May, Newcastle 4 June, Hinckley 25 June, Liverpool We hold free events all over the UK for deaf children, young people and their families. Download our new events calendar for April to October from www.ndcs.org.uk/events to find out what’s coming up and how to book places. 0808 800 8880 • www.ndcs.org.uk


EVENTS

t s o o b e c n e d Confi It won’t be long now until the weather warms up and our summer events for young people get underway. Georgia (16) tells us how taking part in an event last summer helped to kick-start her confidence and find out what’s on offer this year for young people aged 16–18. Georgia says: “I signed up to a summer event after reading about it in Families magazine. I hoped that by taking part I’d meet new friends and improve my communication skills. I knew some of the helpers from past events, which made it easier. During the event, I had to lead a group of young people. Doing something like this, which is outside of my comfort zone, has helped me feel more confident. The staff were excellent in supporting us and helping us to complete our tasks. To anyone who isn’t sure about whether to take part in an event, I would say do it! I loved it and want to do it all again.”

Georgia’s mum Sarah says: “Georgia has a bilateral ‘ski slope’ hearing loss and nerve damage. She has attended many events with the National Deaf Children’s Society, but after this one I noticed a big difference in her. She has matured, her confidence has improved and she came out proud at what she had achieved. At times there were tears, because she thought she couldn’t complete the event, but with the help of the team, and a tearful call to me, she did it! This was partly due to the helpers, who talked her through everything. I have had the pleasure of meeting them before on other activities – they are an amazing bunch, and a big thank you to all of them. They made my Georgia feel like a normal, happy, teenager, and as a mum that’s all you want for your children.”

We have new events for young people this year This summer we’ll be running workshops to help young people aged 16–18 to learn how to be more independent and start planning for the future. The workshops will cover topics including applying for jobs and interview techniques, sexual health and relationships, and how to budget. For more information about this and our many other confidence-boosting events for children and young people aged 8+ see www.ndcs.org.uk/events.

www.ndcs.org.uk/livechat • 0808 800 8880

Inspection success Last year, Ofsted inspected our programme of events for children and young people for the very first time. We’re pleased to announce that we achieved a rating of ‘good’ across our events in all four inspection areas: • the overall experiences of children and young people • how well children and young people are helped and protected • the effectiveness of leaders and managers • working in partnership to improve outcomes for children and young people. Here’s some of the fantastic feedback we received from Ofsted: “Staff and volunteers provide young people with high quality care and support.” “Young people said that they feel safe and that they can speak to any staff member if they are worried or have a concern.” “Staff and volunteers... have high aspirations for all young people. They offer tremendous encouragement and support for them to participate in everything that the scheme offers.”

NDCS Families • Spring 2016

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When I’m a

grown-up Do you ever wonder what your deaf child will do when they grow up? Deaf people share their experiences of the world of work, including how their employers and colleagues adapt to their needs. I’m a literary agent because… “I’m passionate about finding new authors. Plus I get to help shape an author’s book – what a privilege. I find new gems of books (and authors) and sell them to publishers. I recently sold the entire John le Carré backlist and 14 James Bond novels. I also sell the audio rights to the books we represent as an agency. The audio market is such fun to work in, even if I can’t hear them! I’m profoundly deaf, wear hearing aids and depend on lip-reading. I haven’t really found there to be barriers – being deaf is never going to be the problem. What does your child Being hardworking, diligent and always want to be when they looking out for new things – that is grow up? what matters. If you think being deaf For more information on means you won’t succeed, then you careers, check out our section won’t. If you think being deaf is just an about life after extra little task to handle, you’ll be fine. leaving school at My biggest achievement is being very www.buzz.org.uk/ happily married with two children and myfuture. another on the way. I feel very proud of them and of myself.” Alice Lutyens

I’m a tailor because… “I love stitching – I find it relaxing and really enjoy seeing the finished product. I live in India and have profound hearing loss in both ears. I used to feel hopeless about the future, but this changed when I met project workers from Samuha [an organisation supported by the National Deaf Children’s Society’s international arm, Deaf Child Worldwide]. They helped me to get hearing aids, and I joined a youth group where I was able to meet other deaf people and practise sign language.

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NDCS Families • Spring 2016

ROLE MODELS

I work in research and conservation because… “I want to make a positive difference to our natural world. I’m based in South East Asia and study the wild Bornean banteng, a very rare cow that lives in remote jungle. I conduct fieldwork, draft scientific manuscripts, develop new conservation initiatives and supervise students. I’m partially deaf in both ears. I use hearing aids and have to put them in a watertight pouch when there is torrential rain in the jungle. It can be unnerving without my hearing aids but I trust my team to alert me to any dangers. Often my hearing aids rust or malfunction so I dry them out in silica gel and have a spare set ready. Our research will contribute to the first action plan to ensure the survival of banteng in the wild. We have also contributed data to an international database of endangered species, which helps to inform policy-makers’ decisions about the protection of wildlife. Penny Gardner

I trained as a tailor, and with financial support from Samuha I was able to set up my own business. I employ four deaf people and we get plenty of orders – customers have learnt how to communicate with us without knowing sign language. I’m really proud of my business. Not only does it help me to make a living, I can also train and employ other deaf people so they can live independently. Rajavalli Attar 0808 800 8880 • www.ndcs.org.uk


For residential and day pupils aged 3 - 19 years

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

"All students leave with a range of qualifications and accreditations which prepare them exceptionally well for the next phase in their education or the world of work"

"A nurturing and caring ethos which is promoted throughout school is reflected in the caring attitudes pupils show each to other and adults alike" Ofsted 2015

For more information or to arrange a visit please contact: Mandy Dowson, Parental Support Manager, St Johnâ&#x20AC;&#x2122;s School for the Deaf, Church Street, Boston Spa, West Yorkshire, L23 6NE

T: 01937 842144 F: 01937 541471 E: info@stjohns.org.uk W: www.stjohns.org.uk

Where every voice is heard and celebrated


Why I think you should visitâ&#x20AC;Ś

Year 10 nnah Allen,

by Ha ver designed rk Diary Co

Homewo

â&#x20AC;Ś Mary Hare School ! Primary School Open Day, Thursday, 21st April, 2016 Secondary School Open Day, Bank Holiday Monday, 2nd May, 2016 Year 7 Entry Information Day, Friday, 30th September, 2016 To book a place or to arrange an individual visit, please contact Natalie Ross: (n.ross@maryhare.org.uk or 01635 244215) or visit our website www.maryhareschool.org.uk/events

Securing the future of deaf children and young people

Families magazine, issue 40 (spring 2016)  

Our special 40th issue is packed with stories from families and information about childhood deafness and particularly celebrates the role of...

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