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Autumn 2016••Issue Issue35 42 Winter 2014

towards a world without barriers...

towards a world w

towards a world without barriers...

towards a world

towards a world without barriers...

towards a world

Taking the plunge Braidon’s journey to happiness


NEW SPECIALIST PROVISION OPENING 2016 Following the recent, sudden closure of the Royal School for Deaf Children Margate, a number of Local Authorities and parents have contacted Hamilton Lodge School and College requesting placements. We have already been able to accommodate some new students into our main school as our education and our school life is already fully accessible to them. Some of the prospective sudents require extra care and support. To accommodate these students we are developing a new

Specialist Provision for education and care offering the right expertise and environment. This will be fully open by September 2016. If you would like to meet with me or organise an assessment for your child to be considered for this provision please do contact me by telephone

01273 682362 or email david.couch@hamiltonlsc.co.uk David Couch – Principal

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

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

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

@hamiltonlodge

HamiltonLodgeSC

hamiltonbrighton

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


28 Helping your child to make friends

14

Happy 18th birthday Hayley

Hello...

34 Exam access arrangements

I hope you’ve all had a great summer and are ready for the academic year ahead. If your child will be sitting exams this year then it’s useful to think about access arrangements as early as possible. Have a look at our feature on page 34 for advice on where to start. If you have a young child and, like mum Emma, you have concerns about returning to work after maternity leave, read about her son Toby’s experience on page 18 which shows that with the right support deaf children can thrive at nursery. This autumn we’re wishing Hayley a very happy 18th birthday as she becomes an adult. There’s not a dry eye in the house as blogger Tiger Mother looks back on Hayley’s childhood in her last regular blog post and remembers the challenges Hayley has faced and how she has overcome them all (page 14). Finally, have you ever worried about your child learning to drive? Check out our feature on page 24 where deaf young people from South East England challenge myths about deafness and driving. We hope you find this issue useful and inspiring.

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

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

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

Contents Autumn 2016 • Issue 42

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

Children, young people and families

13 Share and support 14 Sounding off! 17 Our superstar 18 Early years Back to work with confidence 20 Primary years Proactive parenting 22 T  ransition years COVER Taking the plunge 24 Young people In the driving seat 26 Additional needs Waiting for an answer 28 H  ow do I...? ...help my child to make friends?

Information, services and events 31 Roadshow 33 Ask the expert 34 The school year 36 Technology 38 Local groups 40 Reviews 42 Our resources 44 What’s on?

Role models

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

NDCS Families • Autumn 2016

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news & views

Follow NDCS on Twitter:

Deaf tip awarenesspic of

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

NDCS on Facebook: www.facebook.com/NDCS.UK www.facebook.com/NDCSScotland

e to Make sure th n is clear – conversatio will find it a deaf child rds ess your wo easier to gu ’r u what yo e if they know t. talking abou

Changes to our Freephone Helpline hours

Understanding your child’s rights Have you struggled to get the right support for your child? Do you think parents need more guidance to understand the different systems that can support their deaf children? Would you like to meet other parents to share experiences? We’ve been working with the Council for Disabled Children and parents of deaf children to develop a programme of workshops which can help you to understand your child’s rights and the systems in place to support you. Our Expert Parent Programme workshops are planned to take place across England this autumn and beyond – so please check www.ndcs.org.uk/events for dates. If you’re interested in attending a free workshop get in touch with us at expert-parent@ ndcs.org.uk or call Carla on 01234 709979.

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NDCS Families • Autumn 2016

Our helpline hours have changed. We’re now open 9am–5pm Monday to Friday. We’ve changed this so we can answer more calls during peak times when our lines are busiest. If you need to call outside these hours – don’t worry – you’ll be able to leave a voicemail to request a call-back.

We’re now open 9am–5pm Monday to Friday

Local events for families in Scotland We’re providing family days in Scotland, working with local authority partners. These events are an opportunity for families to find out about local services for deaf children, connect with families in their own area and have fun.

Ayrshire Family Day, Saturday 1 October, Kelburn Estate and Country Centre Join us for our annual family day in Ayrshire, to find out about local support and take part in fantastic activities including drumming, face-painting, ponytrekking and duck racing. This is a free event for families who live in Ayrshire. Email ayrshireday@ndcs.org.uk to book your place.

0808 800 8880 • www.ndcs.org.uk


NEWS & VIEWS

> Back to work

> Proactive parenting

Mum Emma was happy to leave Toby well-supported at nursery on her return to work page

18

Natalie and Chris have to be proactive to support son Henry with a rare form of deafness page

> Waiting for an answer

Moderate deafness didn’t explain all of Octavia’s needs

20

page

26

Information about hearing aids

We’ve updated our Hearing Aids: Information for families resource. It has everything you need to know about hearing aids, from how they work and how to look after them properly, to getting your child to wear their aids and get the most from them. You can download it from www.ndcs.org.uk/hearingaids or phone our Freephone Helpline to request a paper copy.

New products added to Technology Test Drive

Fundraising event in Scotland

Door chimes are one of the most popular types of product you ask to borrow from us. Two of our door chimes have recently gone out of production so we’ve replaced them with the Humantechnik Signolux. This portable, wireless door chime is very loud, has a bright strobe light and a 200m range – so you’ll always know when someone’s ringing the doorbell. Many deaf children use radio aids in school or at home to help them hear their teacher, parents or even enjoy entertainment better. The most popular radio aid systems in the UK are made by Phonak who have recently launched a range of new classroom products. The Touchscreen Mic is a transmitter with many new features and an easy-to-use touchscreen. The Pass-around Mic is ideal for group work and is much smaller than the previous model, and the Multimedia Hub links to multimedia devices such as smart boards, TVs or computers. We already have these new products available for loan from our Technology Test Drive service. For more information please go to www.ndcs.org.uk/technology.

We’re hosting a charity afternoon tea and cinema event we hope you can join us at:

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

7 November George Hotel, Edinburgh Donation of £40 All money raised will support deaf children and their families in Scotland. For more information or to book your place contact Varshali Swadi on 07966 341021 or varshali.swadi@ndcs.org.uk.

NDCS Families • Autumn 2016

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We could tell you how much our students enjoy learning but we think Nevaeh’s face says it all

enquiries@rsdd.org.uk 01332 362512 www.rsdd.org.uk 6

NDCS Families • Autumn 2016

0808 800 8880 • www.ndcs.org.uk


COMMENT

Our new website is on its way Look out for our brand new website launching this winter. This year – with your help – we’ve been working to create an amazing new website which will make it easier for you to find information, to connect with other members, to get involved in our work and to find out what we’re doing in your area. Lots of you told us it’s hard to find information on our current website. We also know it doesn’t work very well if you’re accessing it from a tablet or mobile phone. This feedback has been central to the new design and back in February we asked you to help organise and label our content. We also built a test version of the

website and asked some of you to try it out to make sure the design was easy to use and understand. We’ve made several changes as a result of your comments. Using your valuable insight we’ve spent the last few months making improvements and are excited to be launching the website in the winter. After that we’ll begin looking at our online resources aimed at deaf children and young people, which we plan to relaunch in 2017. Keep an eye out for our new website – we hope it helps you find the best information and resources to support your child. We look forward to hearing what you think of it.

Susan Daniels OBE Chief Executive

Learn, grow and flourish

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

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


Alison with son Daniel

Working together for campaign success

Anna’s son Wilf

Starting a campaign can be daunting, but there are probably plenty of others like you out there, silently fuming about the same issue. Parents in Brighton and Hove found themselves in that situation so they joined forces. Sian, Anna and Alison are three parents whose children had excellent support from their Teachers of the Deaf (ToDs). But their local council was planning to cut specialist support – which was likely to mean fewer ToDs – without asking the opinion of parents, which by law it has to do. A good case could be made that the changes were unfair to deaf children and hadn’t been properly thought out. So how did they make the council listen? “A group of parents met regularly. We kept in touch with the National Deaf Children’s Society who supported and encouraged us and attended meetings with council officers,” says Alison. “Some parents put questions

at council meetings. Others met with councillors and MPs. Some wrote letters. I had a very positive experience of engaging with some of our local councillors, council officers and MP.” “We were very fortunate to have people with a wide range of skills and the determination to see the job through,” continues Anna. “We spurred each other on with regular update emails to the whole group. The support we felt from one another was inspiring and led to newfound friendships.” “It was a huge team effort and that effort was noted. We were also careful to go prepared, with facts and figures, and ready to explain exactly

Where can you find other people to join your campaign?

Top tips

• Local deaf children’s society groups.

• Contact us on campaigns@ndcs.org.uk for support and advice.

• Local Facebook groups for deafness or deaf children. • Start a petition on www. change.org – it will give you an idea of how many other people want to help. • Contact us – we may know other parents who are affected and could bring everyone together.

Find out more about campaigning at www.ndcs.org.uk/campaigns.

• Get as many facts and figures as possible – use examples from other parts of the country. • Explain the value of what you’re campaigning for. Be objective but use personal examples to illustrate your points. •

Ask for help from everyone you can. Sian says: “The National Deaf Children’s Society was such a great support. It helped us coordinate and offered practical and emotional support. Get in touch as soon as possible if you find yourself in a similar situation.”

• Use the different skills of your group – from public speaking to hosting a meeting in your home (quality chocolate biscuits help!). • Be there for each other – a supportive text to those heading to a council meeting goes a long way. • Check your facts by asking councillors to confirm information you’ve heard is true. If you have a handle on what’s going on you can respond more effectively. • Never give up!

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what cuts would mean for our children and for us. It helped that the council was willing to listen and our MPs were engaged, but working together with a wonderful bunch of parents helped massively,” adds Sian. After showing they had lots of support locally and weren’t going away, the council invited them to discuss the changes and eventually committed to protecting the ToDs. Although we need to keep it to its word, the council now knows that specialist support for deaf children is important. And, it knows there are plenty of parents committed to making sure their children get the support they need.

NDCS Families • Autumn 2016


CAMPAIGNING

Making deaf awareness a priority A doctor’s lack of deaf awareness meant Lauren’s son Mark* struggled to get the support to manage his anxiety.

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

appropriate support. All this doctor offered us was a leaflet. I explained why we felt we needed more and her response was to ask why we needed another label when we’d already given Mark the label ‘deaf ’. What would she have done differently if Mark wasn’t deaf? Her answer: run through a series of practical techniques to help him manage his panic attacks and undertaken verbal tests to help establish a diagnosis. We left the appointment angry and upset. Mark was vulnerable and this had made a bad situation worse. It took a formal complaint to eventually get us an appointment with another doctor. Thankfully this one offered us the support we had expected to begin with. It didn’t fix everything but it gave us a diagnosis and a better understanding of how he was feeling. He was given methods and tools to help manage his anxiety. It would’ve been easy not to

challenge the way Mark was treated at that first appointment. I’m glad we found the strength to make sure he received the support he deserved. His deafness should never have been an excuse for a worse level of service. I hope by sharing my family’s story I’ll inspire others to share their experiences. This isn’t just about negatives – we need to shout about things done well too. Whatever your story, it can help others think about how they communicate with deaf children and young people. Do you live in Wales? Whatever your experiences are as a family with a deaf child, sharing your story can help us call for better support for deaf young people. Please email campaigns.wales@ndcs.org.uk. Our My life, My health resources could help improve deaf young people’s experiences of visiting their GP. Find out more at www.buzz.org.uk/mylifemyhealth.

* Names have been changed in this article.

At 12, Mark was withdrawn, upset and struggling to cope. His constant anxiety led to sickness, panic attacks and daily battles to get him to school. As his mum, this was heartbreaking. We waited almost a year to access support through Child and Adolescent Mental Health Services. We didn’t expect everything to be magically fixed during his first appointment but we hoped to gain a better understanding of how we could make sure Mark had the support that he so clearly needed. At the appointment I explained to the doctor that Mark wasn’t able to wear his hearing aids that day – he had a nasty ear infection – but that he was an excellent lip-reader and would ask if he didn’t understand. Despite repeated reminders, she didn’t talk to Mark once. Her immediate focus wasn’t on him but on the communication barrier she felt was there and how it impacted her. We’d been advised that this appointment would help us get a diagnosis, which was key to getting

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Fundraising

in your community Whether in your child’s school, nearby community centre or other local place, there are plenty of opportunities for fundraising in your neighbourhood.

Cake, bouncy castles and Minions

Get your fingers doing some fundraising

Lucy, Jon and their son Riley held a Big Cake Bake at a local community centre as a thank you for the support they received from us and from their local group, Dudley Deaf Children’s Society. They sold cake and Lucy, Riley and Jon refreshments, arranged a bouncy castle and invited a Minion character along to entertain the children. Jon also applied for matched Could you funding from his company and get friends or family in total they raised more than together and raise £2,500. some dough? Register at “It was a huge success, much bigger than www.ndcs.org.uk/cake we thought and we are thrilled with how and get your free much we raised,” says Lucy. Big Cake Bake kit.

After a family with a deaf child became regular visitors to the Lllanybydder Family Centre, other parents and children wanted to learn some simple signs and how to fingerspell – so they took on our Fingerspellathon and raised £104. Tracey, a play leader at the family centre who has British Sign Language Level 2, had heard of us and the Fingerspellathon. “We decided to hold the Fingerspellathon for the National Deaf Children’s Society as we know the importance of working with deaf children and the money it can cost. It was a great opportunity to get the whole community involved as well as supporting a great charity.” They decided to make a day of it and organised a coffee morning with a story session, invited everyone to take part in their Fingerspellathon and finished by performing some songs in sign language that they had learned together.

Liam Fundraising at your child’s school This year Liam (9), whose sister Grace is deaf, joined his school council at Great Ellingham School. His first task was to recommend us as their charity of the year. He made a poster to tell the school about our work and did such a great job that we were chosen to benefit from the school’s fundraising for the entire year. So far, Great Ellingham School have raised £390 from a cake sale, a collection at their Christmas carol service and collection tins at school and at events.

Do you kn a school th ow at could fundraise fo r us? Visit www .ndcs.org.u k/ schools to see all our fundraisin g ideas and resou rces.

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NDCS Families • Autumn 2016

Do you have any questions about fundraising? You can get in touch with us on ndcschallenges@ndcs.org.uk or 020 7014 1199.

Do you fancy ngers to putting your fi n hold a the test? You ca work, on at Fingerspellath ith friends. at school or w t Sign up now a .uk/ www.ndcs.org fingerspell.


pageit s i th d Tearand senake out ck to m er! ba ur ord yo

FUNDRAISING

Spread some cheer this Christmas… 140mm x 140mm

126mm x 126mm

1

152mm x 100mm

3 £3.85

2

£3.95

£3.85

for 10 cards

for 10 cards

for 10 cards

126mm x 172mm

126mm x 126mm 126mm x 126mm

140mm x 140mm

4

£3.90ards for 10 c

5 £3.80

for 10 cards

7

6 £3.85

£3.75

for 10 cards

for 10 c

ards

Our Christmas cards are now on sale! Every penny you spend will support our work with deaf children. Order your cards now… There are lots of ways to order.

All c come ards envelo with pes!

Go to www.ndcs.org.uk/christmas. Fill out the order form over the page. Visit one of the 300+ Cards for Good Causes outlets around the country (see www.cardsforcharity.co.uk for locations and opening times).

JR1002

Call Impress Publishing on 01227 811658. NDCS is a registered charity in England and Wales no. 1016532

www.ndcs.org.uk/livechat • 0808 800 8880 and in Scotland no. SC040779.

NDCS Families • Autumn 2016

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Order your Christmas cards now Code

Description

Greeting

Price

1

Santa and polar bears

Wishing you happiness and joy this Christmas

£3.95

2

Snowman and robin

With best wishes for Christmas and the New Year

£3.85

3

Vintage Christmas

May your days be filled with wonder and joy

£3.85

4

Angel

Wishing you happiness and joy this Christmas

£3.90

5

Posting letters to Father Christmas Season’s greetings

£3.80

6

Partridge

Merry Christmas and a happy New Year

£3.85

7

Santa’s morning routine

Ho! Ho! Ho! merry Christmas

£3.75

8

Mixed bargain pack of 20

Various messages

£4.50

Quantity

Total

Total cards £ Postage and packing (see below) £ Donation £ Grand total £ Please note that all cards come with envelopes.

Postage and packing for mainland UK Value of cards ordered Postage and packing costs

Up to £10

£10.01–£20

£20.01–£50

£50.01+

£3

£4.15

£5.20

£7.30

For overseas orders contact ndcs@impresspublishing.co.uk.

Your details Title and first name

Surname

Billing address

Delivery address (if different)

Phone number

Gift aid You can make your donation worth 25% more at no extra cost to you. Please claim back the tax I have paid against all gifts I have made to the National Deaf Children’s Society in the last four years, plus any future gifts I may make* Signature

Date

*Please inform the National Deaf Children’s Society if your address or tax status changes. If you pay less Income Tax than the amount of Gift Aid claimed on all your donations in that tax year it is your responsibility to pay any difference.

Payment details Pay by cheque (payable to NDCS Limited) or card (Visa/Mastercard/Maestro) Card number Issue no. (if applicable)

Security code Start date

Expiry date

Post your order form to: National Deaf Children’s Society order, Appledown House, Barton Business Park, Canterbury, Kent CT1 3TE. You can also order online at www.ndcs.org.uk/christmas or by calling 01227 811 658 (lines open 8.30am–5pm, Monday to Friday). Impress Publishing will appear on your debit/credit card statement. Last orders accepted 12 December 2016. Please note delivery turn around can be up to 14 days. Refund/Faulty goods policy can be found on www.ndcs.org.uk. NDCS is a registered charity in England and Wales no. 1016532 and in Scotland no. SC040779. Deaf Child Worldwide is the international arm of the National Deaf Children’s Society.


SHARE AND SUPPORT

Recent discussions:

Share and support

Radio aids Cochlear implants Disability Living Allowance

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: grommets

Topic: visiting primary schools

My son has glue ear and he had grommets last year. After a month the first grommet was pushed out because of an infection, and after five months the second was blocked. The consultant says our son will need another set of grommets. His speech is delayed and we’re desperate.

We’re in the process of visiting primary schools. Our son has moderate hearing loss and wears bilateral hearing aids. What questions should I ask the school to find out if they will support his needs?

<<<vc>>>

Ask for a referral to audiology and potentially a speech therapist. Grommets often fall out and they’re only a stopgap (not a cure) while the glue ear resolves itself. Hearing aids are an alternative and improve the ability to hear. Why is he not a candidate for hearing aids? <<<Carmel>>> My daughter had grommets about five times then suction operations, but the glue came back in both ears within an hour of the operations. Her ears leaked 24/7 and smelt all the time. They did a very big operation in the end. Please ask for a referral to audiology and ask about bone conduction hearing aids – they will help until his ears hopefully get better. <<<mandarooney>>> You can find information about glue ear at www.ndcs.org.uk/glueear or to find out more about hearing aids see www.ndcs.org.uk/ hearingaids.

<<<Facebook user>>>

Ask if they’ve got any experience of supporting children with hearing impairments, if the teacher will wear a radio aid and if they will take part in deaf awareness training or research. Ask to meet with the special educational needs teacher or coordinator too. <<<Facebook user>>> Do they have specialist teaching assistants and clubs to meet others who are hearing impaired? How often does the Teacher of the Deaf visit? Do they keep spare batteries and equipment? <<<Lisa Tompkins>>> Look out for acoustic environments more than questions for staff – they can be trained to support your child but altering buildings is another matter! Look out for noisy hand-dryers, extractor fans, high ceilings and windows that aren’t double-glazed. Classrooms should have carpets or lino flooring – and the school hall should have chair and table legs with softeners on the bottom. <<<Lisa Wickes>>>

For guidance on choosing a school for your child visit www.ndcs.org.uk/choosingaschool.

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

NDCS Families • Autumn 2016

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Sounding off! Hayley bids farewell to childhood and continues along the path to a future full of hope and ambitions…

Monday evening, at the computer “Seems funny I won’t be reading about my life anymore…” Hayley looks sad but then her face lights up. “But hey I’ll be able to drink alcohol!” Yes, Hayley turns 18 this month and as she says goodbye officially to childhood, we say farewell to the regular blog. We know the National Deaf Children’s Society will be there for us for a few years yet, but our biggest battles have been fought. Looking back at the first blogs seven years ago I’m blown away by how far we’ve come. Hayley was in primary school and we were just beginning our journey to get her on the road to success and wellbeing in a hearing world.

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

It’s never been easier to learn Cued Speech

We could tell you how happy our students are but we think Isola’s face says it all

 Arrange an introductory session for professionals and families

 Keep on track with affordable Skype sessions  Use free e-learning to build skills  Bursaries for parents where needed “The discovery of Cued Speech and what it could do for our son and for us as a family was profoundly liberating and life-changing….”

Contact us at T: 01803 712853 E: info@cuedspeech.co.uk W: cuedspeech.co.uk learntocue.co.uk Charity registered in England and Wales No 279523

enquiries@rsdd.org.uk 01332 362512 www.rsdd.org.uk


TIGER MOTHER

Realising what we were up against after she was diagnosed as deaf, what her needs were, how they’d be supported (or most often not). Learning how we’d have to battle for every scrap of help, but how the National Deaf Children’s Society would be by our side, including often literally with our children and families’ support officer in school meetings, to help get what Hayley needed. Learning about everything, from how to re-tube Hayley’s hearing aids – after hours of me trying to push (!) the new tube in – to how to apply for special exam arrangements when she reached GCSE year. Discovering she could be entitled to a special educational needs (SEN) statement and getting expert help from the National Deaf Children’s Society to appeal. I remember how exhausting and frustrating primary school was for a child spending every minute intensely straining to hear what’s being said, not just by teachers but in the noisy chaos of the playground. The tantrums at home after a long day coping, headaches from a noisy world amplified by hearing aids – a world that won’t take the time to make sure Hayley’s heard, or to wait for her to get her words out when she stumbles, her processing skills and other deaf-related issues, like word retrieval difficulties, halting her, tripping her up. The world moving on without her – her being just that step behind and being left out because of it. The loneliness, tears and isolation, the constant struggle socially. I remember the high hopes of an excited 11-year-old Hayley starting secondary school thinking everything would be amazing, but finding it harder than ever – the challenges of navigating around a huge site, never quite knowing where she should be (she once sat through a French lesson thinking it was German!). Being ostracised and bullied, sobbing every night, begging to move schools. More support from the National Deaf Children’s Society encouraging the special educational needs coordinator (SENCO) to help find strategies to improve things.

Being diagnosed with autism, then later undiagnosed, no resolution to her difficulties, perhaps just a mix of deaf-related issues. Being permanently at war with useless SENCOs, battling for more support in the classroom. Getting information from the National Deaf Children’s Society explaining about rights to extra exam time, presenting it to the SENCO who’d refused Hayley extra time. Remembering the time her consultant finally said, after countless operations including three mastoidectomies to rid her of cholesteatomas in both ears, that she’d now only need an annual check-up – yay! And Hayley asking would she always have to wear hearing aids and him saying “Yes Hayley, but they’re part of you, part of who you are”. I could kiss that man. Then there were National Deaf Children’s Society residential events we’d collect Hayley from and find her apparently inches taller, self-esteem boosted, full of the fantastic time she’d had trying new things, making friends. Watching Hayley’s love of cooking develop, winning young chef contests, gaining confidence and a direction. Last September, fresh beginnings at catering college. Not wanting to put her hair up because her new classmates would see her hearing aids, then going for it anyway. The National Deaf Children’s Society helped us through it all, helped Hayley find herself, believe in herself. She recently shared a Facebook post which said: ‘If I had the choice I would choose to be deaf’. She’s come such a long way from the frustrated meltdowns – “hate my hearing aids, hate my stupid ears”. Hayley talks of volunteering for the National Deaf Children’s Society, to help support other deaf children to blossom into strong, independent young people who can hold their heads high and embrace life, their future, just like any other young person. Just like Hayley has. I’ll be honest, I’m feeling more than a little emotional as I write this. I’ll probably hit the alcohol with as much enthusiasm as Hayley will! But right now I want to say goodbye to the regular blog (though we might post an occasional update) and thank you to the National Deaf Children’s Society for helping to fight Hayley’s battles so far, and for all they do to help deaf children and young people. The world, and their world, is a better place for it.

> Read Tiger Mother’s blog at

www.ndcs.org.uk/soundingoff

If you need support with any of the issues mentioned in this article, get in touch with our Freephone Helpline. NDCS Families • Autumn 2016

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


SO PROUD!

Every day deaf children and young people prove that deafness shouldn’t be a barrier to enjoying life. Read on for some of the amazing things your children have done to make you proud. Our beautiful girl Cerys has kept her hearing aids in for over three weeks and learnt to sign ‘where’ and ‘drink’. We (including her four brothers) are all learning sign language. She’s gone through meningitis and been so brave and we want her to know how proud we are and how loved she is. Sarah and Matthew, parents to Cerys (2) who is severely deaf.

Eva was diagnosed profoundly deaf at birth through newborn hearing screening and has bilateral cochlear implants. We’re so proud of her as she’s just passed her British Sign Language Level 1. She’s such a happy girl with such a love of life. Leanne and Iain, parents to Eva (8) who is profoundly deaf. We’re so proud of Rylan who was picked to play for Great Britain in this year’s World Deaf Football Championships in Italy and is one of the youngest ever players. He also starred for Doncaster in the Deaf Futsal Champions League tournament in Spain earlier this year. Miranda and Paul, parents to Rylan (16) who is profoundly deaf. www.ndcs.org.uk/livechat • 0808 800 8880

Hooriya was diagnosed profoundly deaf at 11 months and had a cochlear implant at age two. After four years of training and a six-hour assessment, the normally shy and timid Hooriya achieved her first Black Belt in kickboxing. I’m tremendously proud of her as she acknowledges she generally isn’t confident in sports and PE but stuck at it, attending regular training sessions to achieve this feat. Bobby, mum to Hooriya (11) who is profoundly deaf.

Harrison was born with microtia of the right ear and also has hearing loss in his left ear. He wears a hearing aid and recently began wearing a bone-anchored hearing aid. He’s a bright and determined little boy who loves playing outdoors, swimming, drawing and making us laugh. Nothing will stop our little superstar! Sarah and Gareth, parents to Harrison (5) who is moderately deaf.

Lewis makes me so proud – he tries his hardest to listen and talk and concentrates really well on learning to sign at home after a long day in nursery. He’s battled with glue ear, multiple ear infections and perforated ear drums, yet he remains a resilient little trooper. He’s such a good boy at all his appointments – all the professionals praise him for his behaviour. Melissa, mum to Lewis (3) who is severely to profoundly deaf.

Heath didn’t receive a diagnosis of hearing loss or his hearing aids until he was three-and-a-half. We’re so proud of him for all his hard work and determination at school and for being an amazing reader. Joanne and Elliott, parents to Heath (6) who is severely deaf.

Do you know a deaf child who’s a superstar? Parents, extended family members or teachers/professionals can all nominate by emailing magazine@ndcs.org.uk. No matter what your child’s level of hearing loss or however big or small the achievement, we think it’s worth celebrating! 17


Back to work with confidence Emma was anxious about returning to work after her baby boy Toby was diagnosed as deaf, but the dedication of nursery staff made it possible…

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mma waves goodbye to her little boy and he runs up for a kiss before dashing away to play. As she drives off to work, Emma knows Toby (3) will love his day at nursery. Not for the first time, she reflects on the wonderful staff at YMCA Charters mainstream nursery in Garston, Hertfordshire. Three years earlier she’d never have believed it could be this easy to return to work after maternity leave. Toby was diagnosed as moderately deaf at four weeks old, which came as a bombshell to Emma and husband Jeremy. “It was the saddest day ever,” says Emma. “We were so worried – how he’d cope, if he’d be shy and withdrawn, how he’d interact with other children.” Emma focused on managing Toby’s hearing aids and following the advice of his Teacher of the Deaf (ToD), along with hospital and audiology appointments including fortnightly trips for new earmoulds. With their two-year-old daughter Holly too, life was hectic. “You find yourself in this endless system of appointments and having a toddler as well was draining,” says Emma. “Holly’s nursery was brilliant. Whenever she asked them questions about deafness, they explained things to her.” By the time Toby was 10 months, his appointments had reduced and Emma’s thoughts turned to work. She’d returned to her job as a commercial manager at Jeremy’s joinery business when Holly was a year old, but there was no way she’d leave Toby because of his deafness. “The nursery was great, they did lots of messy play and outside activities. I was completely happy leaving Holly there,” says Emma. “I’d had Toby’s name down for a place since I was pregnant but I couldn’t imagine leaving him. I was concerned he’d never cope. All the noise would be disruptive and who’d look after his hearing aids, make sure he could lip-read okay? He needed me. “Then Jeremy reminded me how much I enjoy working, and said it wouldn’t be good for Toby to spend all day with me at home and at hospital appointments. We had to get

him ready for ‘real life’ so we agreed we’d try nursery.” When Toby was 11 months, he started three days a week. The ToD made an initial visit, making simple recommendations to help meet Toby’s needs. These included switching off nursery rhymes and music to cut down background noise. She made staff aware they should always face him when speaking and advised them where Toby should sit when he was fed so he could see their faces. She showed them how to check his hearing aids and change the batteries. “We planned three weeks’ settling in with me staying, but on the second visit he wanted me to go!” says Emma. “He was so excited to be there. The nursery staff took on all the ToD’s suggestions and also let Holly go into the babies’ room to help him settle – not that he needed it! He’d spent so much time with me at home that he was desperate to play.” Emma returned to work feeling confident and Toby progressed well, but at 18 months he suffered with glue ear and wax, and his hearing dropped to profoundly deaf. “He was so frustrated, he started biting other children,” says Emma. “Again the nursery staff were fantastic. After nap time they’d take him to a quiet corner for 10 minutes one-to-one, doing speech and language and communication games the ToD had suggested. It was the same nursery nurse each time, which really helped.” After four months, Toby’s glue ear cleared but they decided to continue with the helpful sessions. “They also had all the children singing songs as a group with all the ‘ooh’ and ‘ahh’ sounds the ToD suggested. It made my life easier, meant we could spend less time doing the speech exercises and do normal family things in our free time,” says Emma. “We have a good dialogue with the nursery. We give audiology appointment feedback, and the ToD did a session

“He’d spent so much time with me at home that he was desperate to play!”

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NDCS Families • Autumn 2016

0808 800 8880 • www.ndcs.org.uk


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Starting school late

on communication with all staff, including them trying hearing aids. The nursery has jumped on it as all the children can benefit, including any who might have undiagnosed glue ear.” Now Emma’s confident about Toby starting school this month. “School is a big step but I know he’ll let nothing stand in his way. He’s a smart little cookie,” says Emma. “I’d been worrying he’d never speak – he never shuts up! His speech is normal. As well as his amazing nursery and ToD, I think Holly’s played a big part in that too. She’s such a natural with him, talks to his face, is always chatty with him. She’s like a little mum and he adores her. She’s a superstar! “Toby’s started doing football on Saturdays and he positions himself right in front of the coach so he can hear, like nursery has shown him. He’s a typical little boy, loves his football and is always up to mischief! I’d say to parents, be confident about letting your children off the rein, they’ll thrive. It’s not fair being overprotective – he wouldn’t have become the confident little man he is.”

“I’d say to other parents, be confident about letting your child off the rein.”

Toby stars in our new video My deaf child and going to nursery. You can watch it at www.youtube.com/ndcswebteam. If your child’s nursery teachers or other early years staff need guidance on how to support your child you can show them our booklet Supporting the Achievement of Hearing Impaired Children in Nursery Settings which can be downloaded from www.ndcs.org.uk/supportingearlyyears. We also have templates for personal passports which bring together all the most important information about your child so that any adult caring for them can support them. Find out more at www.ndcs.org.uk/passports.

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

Is your child’s birthday on or between 1 April and 31 August? If you live in England they could start school a year later than other children if you think it would be best for them. A delay in starting school could give your child the chance to develop the language, communication and social skills they’ll need to make the most of the opportunities school offers. Find out more at www.ndcs.org.uk/summerborn.

Glue ear

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

Weekly planner

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

www.ndcs.org.uk/0-4 NDCS Families • Autumn 2016

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Proactive parenting Natalie and Chris didn’t know what to expect when son Henry was diagnosed with otosclerosis, a rare form of progressive deafness. But being proactive and giving Henry a say on things has meant he’s been able to thrive.

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enry (8) knows his own mind and parents Natalie and Chris know the importance of letting him express himself. “Henry is his own person, he’s got a real sense of who he is and what he wants,” says Natalie. “When he was first diagnosed I bought some flashcards and we taught him basic signs. After a couple of days he wanted another pack of flashcards. He has a real thirst for knowledge around British Sign Language (BSL). He showed he

was naturally drawn to it otherwise we wouldn’t have pushed for it. It’s what he wanted, and it’s his life.” As a toddler, Henry was treated for glue ear and repeated ear infections. “I’d never seen anything like it. It was like someone was pouring caramel out of his ear,” remembers Natalie. “Henry had two sets of grommets but the first time we suspected he might have a permanent hearing loss was just after he had his second set, when he was about three-and-a-half. He was waiting to be discharged and I went up behind him and whispered in his ear, thinking that now he definitely had no fluid on his eardrum he’d be able to hear me, but he couldn’t hear me at all.” A series of follow-up appointments and tests followed before Henry was diagnosed with progressive hearing loss and given a hearing aid. “We were heartbroken. I cried, a lot,” remembers Natalie. “It was quite a shock, but then you adjust because you have to and it’s certainly not the end of the world. We wrongly thought Henry wouldn’t have the childhood we dreamed for him and that he wouldn’t be able to do what every other child could do.” When the ear, nose and throat surgeon noticed Henry’s hearing was reducing, he arranged for a CT scan which revealed Henry had otosclerosis. “With otosclerosis the consistency of the bone in the ear changes. We’ve been told it’s like cement has been poured into the ear because everything solidifies and the three tiny bones in the middle ear seize up and can’t function,” Natalie explains. The otosclerosis then took hold in Henry’s other ear and he was given a second hearing aid nine months later.

Otosclerosis is very rare in young children so Natalie and Chris struggled to find much information online. “We rang the National Deaf Children’s Society and we spoke to a couple of consultants at the hospital. We’ve accumulated knowledge along the way,” says Natalie. “Henry has tinnitus at night. He thought there were bees in his bed which he found terrifying, so our audiologist referred us to a social worker for deaf children.” The social worker helped with Henry’s sleep problems and also helped the family get some funding to learn BSL, which they’d struggled to get for Henry. “She was excellent. Taking the referral was the best thing we could’ve done,” says Chris. “She fought for our case,” adds Natalie. “A local charity came and taught us family signing in our house. That was brilliant.” Henry now continues to be taught at school by his teaching assistant, as set out in his Education, Health and Care plan (EHC plan). The family also had to push for the EHC plan for Henry, with support from his special educational needs coordinator (SENCO) at school. “While Henry wasn’t years behind, he certainly wasn’t level-pegging academically with his peers because he missed out on a few years of exposure to speech. The EHC plan took a long time and lots of assessments but we were fortunate to get one first time,” Natalie says. Henry was also given the opportunity to try a bone conduction hearing implant (often known as a boneanchored hearing aid or BAHA). “As soon as he put it on he loved it – he said the sound was different. After 0808 800 8880 • www.ndcs.org.uk


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Your autumn checklist for the primary years Sleeping

trialling it on a soft band he refused to wear his behind-the-ear hearing aids,” says Natalie. Henry had surgery for the permanent bone conduction hearing implant in April 2015. “It’s his best option at the moment because it bypasses the bones that aren’t working, but in years to come we might need to rethink,” Natalie says. Speech and language therapy has greatly improved Henry’s communication but he used to feel frustrated when he couldn’t verbalise things. “He’s a really placid little boy but in the past he’s bitten another child or lashed out. Obviously it’s concerning because he’s trying to get a message across,” says Natalie. “He was using a radio aid system at school and a staff member, who’s brilliant with Henry, helpfully encouraged him to use it more frequently. Henry didn’t want to do this and so broke it by biting the wire. He didn’t have the language to say ‘I don’t like this because…’ We all sat down then and asked him if he still liked it. He said he didn’t, so we said no problem. He gets tired using the radio aid and they aren’t for everyone. We’ll fight for any piece of equipment we think may help Henry, but it’s always his decision whether he chooses to use it. We’re not going to force anything on him. We told the school and they’re completely supportive.” Natalie and Chris, who also have an older son William (10), have fought, and won, many battles for Henry including when his Disability Living Allowance was taken away. “If you want something you really have to fight for it and be a very proactive parent to get what you believe your child needs,” advises Natalie. “You’ve got to be instinctive; nobody knows your child as well as you – you have to be their advocate.” “We just want the best for Henry,” concludes Chris. “Obviously as we do for both of our kids, but whatever Henry wants to do we will support him.”

For more information about otosclerosis see www.ndcs.org. uk/causesofdeafness. We also have information on learning BSL at www.ndcs.org.uk/signlanguage.

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

Getting back into the autumn routine will be easier if all the family can get a good night’s sleep, but it’s common for deaf children to have sleep problems. If your child is struggling then look at our webpage www.ndcs. org.uk/sleep for possible reasons why, tips on what might help and where to go for more information.

Films for school staff Our Here to Learn films are for primary school staff who have little or no experience of working with deaf children and provide tips and suggestions of how best to teach a deaf child. Actually showing a new teacher good and bad practice can be a really useful way of explaining what your child might need. The films can be viewed online at www.ndcs.org. uk/heretolearn.

Phonics We have a range of information for parents and teachers about teaching phonics to deaf children – including why it’s important, the challenges deaf children may face and how they can be overcome. Find out more at www.ndcs.org.uk/phonics.

www.ndcs.org.uk/5-10 NDCS Families • Autumn 2016

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Taking the plunge Rachel’s call to our Freephone Helpline kick-started her son Braidon’s journey to happiness, with a change of school and new opportunities for him to meet other deaf young people.

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raidon’s whole family turned up to the deaf-friendly swimming gala and couldn’t help but shout and cheer when Braidon began his race. “He did really well,” says mum Rachel proudly. “He got a medal and a certificate. It was like the confidence bag had been opened.” Braidon, now 13, wasn’t diagnosed as profoundly deaf until he was in reception and wasn’t given hearing aids until he was in Year 2. This meant he was two or three years behind in junior school until he moved to a new school which had other deaf children, better acoustics and support from a Teacher of the Deaf. However, things went downhill again with the transition to secondary school. “I noticed his grades were dropping quite dramatically,” remembers Rachel. “He was becoming very withdrawn and wasn’t himself. He was getting frustrated because the teachers weren’t listening or understanding. We were having meeting after meeting at school but nothing seemed to change. I came home one day and I thought ‘I can’t do this on my own anymore’. It was a big thing for me to say I needed help. I took a deep breath and rang the National Deaf Children’s Society.”

“It was a big thing for me to say I needed help.”

Following Rachel’s call to our helpline, Bal, one of our children and families’ support officers, got in touch to arrange a time to visit the family. “The first time I met her it was like I’d known her all my life,” smiles Rachel. “The questions 22

NDCS Families • Autumn 2016

she came out with I would never have thought of – school couldn’t answer half of them.” Bal also suggested to Rachel some different schools to look at and eventually, after a long fight, Braidon was able to move to a local school with a hearing impaired unit. “Several times I thought ‘am I doing the right thing?’” says Rachel. “But within months of moving him, his grades had accelerated.” It wasn’t only school that Bal was able to help the family with. She knew that Braidon’s confidence was down and that he didn’t know other deaf children, so she suggested he attend our deaffriendly swimming lessons* – a free 12-week course for deaf young people. “He’d had swimming lessons when he was younger,” says Rachel. “So he knew he could do it. They taught him how to dive, how to swim underwater and they did lifesaving. He did amazingly well.” “It helped boost my confidence,” adds Braidon. “When we were in the swimming pool the instructors got in with us and they could sign, so that helped us to understand.” After the swimming course had finished, Rachel received an email inviting Braidon to our deaf-friendly swimming gala. “I showed Braidon the email and asked him what he thought,” says Rachel. “And he said ‘Yeah, I want to do that.’ I was surprised because he’s quiet and reserved, especially in an environment he’s not sure of and with people he doesn’t know. I told him ‘There’ll be lots of people; I can’t be stood next to you’, but he said that would be fine. At that point it was me that was more apprehensive than him! If it wasn’t for the swimming

programme he wouldn’t do half of what he does.” Around the time that Braidon was taking part in the swimming programme, he was also considering taking up karate.

“It was me that was more apprehensive than him!”

“He’d had a few lessons but was struggling with the acoustics,” explains Rachel. “He couldn’t wear his hearing aids in the hall because of the echo; it was too loud and hurt his ears. I really didn’t think it was going to work out.” But the swimming gala gave Braidon a new-found determination to carry on with the karate. “I spoke to Braidon’s sensei [karate teacher],” says Rachel. “I explained about his hearing loss and he said ‘No problem, I’ll make sure I’m always right in front of him to make sure he’s understood.’” Braidon’s doing really well at karate and is now a red belt – two away from black. Braidon has another success to celebrate – last year both Bal and his Teacher of the Deaf suggested he apply for our Young People’s Advisory Board (YAB), a group of deaf young people who shape and guide our services. After an application form and an interview, in December he found out he’d been appointed. He’s since been on two residential weekends and is working with the other YAB members on a campaign around sign language. His advice for other deaf young people who would like to take up activities: “Get involved with the National Deaf Children’s Society because they can really boost your confidence.” 0808 800 8880 • www.ndcs.org.uk


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Your autumn checklist for the secondary years Lucy’s vlog

Watch teenager Lucy’s vlog about her experiences of being moderately deaf at secondary school and how she found confidence at www.youtube. com/ndcswebteam.

Emergency SMS service

Has your child signed up for the emergency SMS service, which allows them to send a text to contact the emergency services if they’re unable to use the phone? They will need to register their mobile to use this service. Find out more at www.buzz.org.uk/ emergencysms.

Access arrangements for music exams

* Our deaf-friendly swimming projects in England and Scotland are funded by Sport England and the National Lottery through the Big Lottery Fund respectively.

We have information on choosing a school for your deaf child at www.ndcs.org.uk/choosingaschool. To find out more about our deaf-friendly swimming lessons visit www.ndcs.org.uk/ swimming. For more information about the YAB have a look at www.buzz.org.uk/YAB.

We’re working with various music examination boards on how they can adapt their exams to make them more accessible for deaf candidates. You can download our factsheet Music Exams – Information on the adaptations available for young deaf candidates for your child to give to their music teacher. You can find it at www.ndcs. org.uk/musicexams.

www.ndcs.org.uk/11-13 NDCS Families • Autumn 2016

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In the driving seat Teenagers from South East Berkshire Deaf Children’s Society challenge myths about deaf people and driving. Have you ever been told that deaf people shouldn’t drive or aren’t allowed to? Or has your deaf teenager had worries about learning to drive? Earlier this year, South East Berkshire Deaf Children’s Society (SEBDCS) worked with their local driving school, THINK, to offer driving lessons for deaf 15 and 16 year olds in their area. The project came about as a result of a grant from Mars In The Community, managed by Berkshire Community Foundation, who understood how important it is for deaf teenagers to meet up with other teenagers who are facing the same issues. The THINK driving school booked three days at Dunsfold Park, home of Top Gear driving, so they could offer driving lessons to deaf young people in an off-road location. All the young people gave positive feedback and two continued taking lessons after they turned 17.

Cameron (17) who is profoundly deaf with two cochlear implants, has now passed his driving test. “I was 16 when I took these driving lessons. I already knew I wanted to pass my test as soon as possible once I was 17 and the lessons gave me confidence to do this. Beforehand I wasn’t sure if I’d hear all the explanations from the instructor. I was worried I wouldn’t be able to listen and follow instructions at the same time, but I really enjoyed the lessons. It was a safe driving track to try new skills without worrying about being on a real road. There was lots of space and on the first day we were able to try basic driving, roundabouts, traffic lights and junctions with very few other cars around. On the second day we did parking and reversing into a bay. I had no problems communicating with the instructor. He had already talked to my dad about what I was likely to be able to hear over the engine noise. He explained a lot to me while we were sitting in the parking area before we started and he used lots of hand gestures. Some of the other teenagers took their radio aids. After the initial lessons were over I continued with the same instructor from the THINK driving school for my lessons on the road. I already knew him well by then and he knew how to help me. He took me to quiet streets to start with and then gradually onto busier roads. I practised my theory test over and over at home on CDs and apps so I knew what to expect on the day. My instructor spoke to the examiner before my practical test and explained that I had a hearing loss. I think you can add this when you book a test but I didn’t do that. The test wasn’t adapted in any way but the examiner was aware that he had to make things clear to me. Learning to drive isn’t as difficult as you think. Find an instructor who is keen to understand your hearing loss and make sure you tell them if you don’t understand things. It’s worth all the effort when you’re able to drive and be independent.” 24

NDCS Families • Autumn 2016

Top tips for deaf young people learning to drive Before starting lessons, your child could: • ask to meet a potential instructor before booking lessons to establish communication and see if they are comfortable with the instructor’s methods •

take responsibility for teaching their chosen instructor how to be deaf aware and any useful communication techniques such as hand gestures or direction signs

ask for an ‘agenda’ before each lesson so they know what will happen and have pre-information about what they will be taught, such as any new manoeuvres.

Don’t forget: •

to drive a car or a motorcycle, your child won’t need to tell the DVLA they are deaf

your child can take a British Sign Language interpreter along to their lessons if they need one

for information about taking a practical driving test see www.gov.uk/driving-test/ disability-health-conditionor-learning-difficulty.

0808 800 8880 • www.ndcs.org.uk


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Your autumn checklist for the post 14 years Going to the doctor

Does your teenager rely on you to go to their GP appointments with them? Our My life, My health resources could help them to attend healthcare appointments independently. Have a look on our Buzz website. www.buzz.org.uk/mylifemyhealth Miguel (16) who is moderately deaf and wears one hearing aid, also took part in the lessons. “I was very nervous beforehand. However, when I got in the car with the instructor, he was very nice and helped me calm down a bit. I found the lessons amazing – they were very relaxing. The instructor didn’t force anything on me, but when he needed to step in he did, so I felt safe at all times. I’d tell other young people who might have worries about learning to drive that it’s not as scary as it seems. It’s almost like riding a bike; once you understand the basics of it, you’ve got it. If you do feel nervous, the instructors will help you calm down. Make sure you get a good instructor that you understand and who makes you feel safe. When I’m 17 I definitely want to do more lessons and get my licence.”

Parents said:

“Ben enjoyed both of his lessons immensely. The instructor explained things very clearly and Ben said he was excellent. Ben is now looking forward to when he can start his driving lessons and pass his test!” “Both of my boys had the opportunity to drive. Being off-road was brilliant, it allowed them to drive in a quieter environment. They both said it was good and the instructors were understanding.”

Helping your child to stay safe and smart online

If your child spends a lot of time online and you worry about what they’re doing, then have a look at our new webpage about staying safe online. It has loads of tips and advice on what you can do to protect your child and encourage them to make smart choices. Visit www.ndcs.org. uk/esafety.

Handbook for employers

Is your son or daughter starting an apprenticeship this autumn? Supported by the Department for Education, we’ve produced a handbook to help employers make sure their recruitment process and workplace are as fair and accessible to deaf people as possible. This might be useful for your child to give to their employer. Download it from www.ndcs.org.uk/ breakingdownbarriers.

Check out our information for young people about learning to drive on the Buzz at www.buzz.org.uk/ learningtodrive. For general deaf awareness tips see www.ndcs.org.uk/toptips.

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

www.ndcs.org.uk/14plus NDCS Families • Autumn 2016

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Waiting for an answer When a diagnosis of moderate deafness wasn’t explaining all of Octavia’s problems, parents Sarah and Harry didn’t know quite how long they’d have to wait to get an explanation.

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arah and Harry’s third child Octavia (9) was born in India and the day she was born Octavia had a seizure. “They never really got to the bottom of it,” says Sarah. “They wondered whether it was epilepsy and she was put on an epilepsy medication called phenobarbitone which really knocked her out for three months, but she never had another seizure.” Soon afterwards, the family moved to Argentina. At age two, Sarah and Harry were concerned that Octavia wasn’t speaking. “Her paediatrician said ‘We either have a neurological issue or a hearing issue’,” says Sarah. “She had hearing tests and some fairly unpleasant brainstem tests and the hearing tests showed she did indeed have a moderate conductive hearing loss on both sides.” By age three, Octavia had been fitted with hearing aids. “I think she realised very early on that wearing the hearing aids meant she could connect with people and she’s a sociable little thing,” says Sarah. Despite Octavia getting on so well with her hearing aids, her speech wasn’t progressing and it was clear she was behind her classmates. “She struggled to pick up conceptual ideas, particularly anything related to maths,” explains Sarah. “She had very intensive speech therapy and at the same time she was seeing a neurologist who was picking up learning and developmental delays. He said to us: ‘Octavia needs to be one language only – we can’t move forward with her in this environment’.” So when Octavia was five years old the family moved back to England. “Her speech was limited to ‘Ma, ma, ma’,” remembers Sarah. “I think she couldn’t speak because she couldn’t

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process two languages. But in the three years we’ve been here her speech has come on enormously.” Three years ago, Sarah and Harry started the process of applying for a statement of special educational needs for Octavia, which required getting a medical. “We talked with the doctor about the seizure she had when she was born,” says Sarah. “And he referred us to a paediatrician who specialises in epilepsy to put our mind at rest.” The paediatrician recommended a Karyotype test (to identify and evaluate the size, shape and number of chromosomes in a sample of body cells). As she’d already had this testing done in India, Sarah

“Keep going until you get an answer.” and Harry assumed it wouldn’t show anything. “What I hadn’t appreciated was that technology had moved on. Before, they were trying to make a diagnosis from what the human eye can see, whereas now it’s done by computers. When they said ‘I have a diagnosis for you’ I was so taken aback. I’d always known that something was wrong but nobody had been able to say what. We’d been told she had moderate hearing loss but that didn’t explain all the problems she’d been having. It got to the point where I didn’t think we’d ever really know, medically, why she was behind. “When the geneticist said to me ‘Octavia has 22q11.2 deletion syndrome’ I was in tears,” remembers Sarah. The couple were told that the learning difficulties and the hearing loss were part of this varied genetic

syndrome, which was also causing her immune system to be slightly stressed – Octavia gets a lot of ear infections. She also has a cleft palate which is common in children with 22q11.2. Some children with 22q11.2 also have problems with their heart and liver, but thankfully Octavia hasn’t experienced this, although she does have maintenance appointments each year with an immunologist, cardiologist and a renal specialist just to check no problems are arising. Since getting the diagnosis, the couple have found out that 22q11.2 is the second highest genetic cause of conductive deafness after Down’s syndrome. “Harry and I went to a medical conference last year run by a fantastic support group called Max Appeal,” says Sarah. “The specialists there were all saying there are far more people out there with 22q11.2 than are diagnosed. It’s only now with this very high-tech testing that it’s becoming apparent. “Octavia knows that she is different from other children and at times that can knock her confidence,” says Sarah. “Although she’s a lively, happy and determined little girl – she can be quite sensitive and has been bullied a bit in the past. Two years ago it got out of hand and we had to move her to a different school – a lovely, small country primary school with fantastic teachers.” It was an emotional time for Sarah and Harry when Octavia was given her diagnosis but they were relieved to finally find out. “If you know something’s wrong,” advises Sarah, “keep going until you get an answer. We waited for seven years because of living in a foreign country and the genetic testing had moved on. Although you can live without that answer, suddenly when you have it, things become an awful lot easier. It’s important to have a medical team around the child that you have faith in and if you don’t, then change it. I think sometimes we can be a little bit afraid of hurting people’s feelings but at the end of the day you have to do what’s right for your child.” 0808 800 8880 • www.ndcs.org.uk


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

22q11.2 deletion syndrome: •

is a genetic disorder caused by the deletion of a small piece of chromosome 22

is a spectrum causing 180 possible health issues, with some barely noticeable and some severe

has a number of different names depending on the symptoms

is estimated to affect at least one in every 1,800 births

is complex to diagnose; mild to moderate symptoms may be missed or misdiagnosed due to overlap with other disorders.

If you’d like to find out more about 22q11.2 deletion syndrome, visit the Max Appeal website at www.maxappeal.org.uk. If you’re interested in finding out about speech and language therapy, visit www.ndcs.org.uk/slt.

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

Specialist activity providers

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

Booklet

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

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

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How do I... ? ...help my child make friends?

Making friends is such an important part of growing up, but what are the challenges for deaf children and how can parents and carers help? Sophie is mum to Harry (2) who is moderately deaf and wears hearing aids. Recently I’ve been getting worried that Harry will be excluded within his friendship group at nursery. The other toddlers’ communication and speech is coming on leaps and bounds and he is quite clearly behind them. I’m worried they won’t understand him, he won’t hear them properly and they’ll start to move towards hearing friends who can interact with them better. It’s a major concern for me and I worry about isolation. I try to arrange one-on-one play dates with his friends outside of nursery so that he can interact in a better learning environment and develop friendships when there’s less Harry ‘competition.’

Vicki is mum to Jacob (16), Joe (14), Talitha (9) and Jed (8). Joe has a moderate to severe hearing loss and wears hearing aids. Joe is lucky to go to a brand new school with small classes which has helped him make a couple of nice friendships. He finds it difficult to start up conversations with new people as he worries about understanding them, especially if they have accents. I have always encouraged Joe to have friends back after school but he isn’t keen. He uses FaceTime and Skype to communicate with friends but he still doesn’t have the confidence to go out alone or get buses to meet friends. Recently Joe went on a National Deaf Children’s Society Get Creative Weekend. I was surprised that he actually wanted to go but lately he has been enjoying drama and I explained that it was a drama weekend, so he went off nervously but happily. I couldn’t believe the change in him when I picked him up. He had a fantastic time, loved every activity and made a couple of deaf friends who he has stayed in touch with. I’m pleased that he has other lads his age to talk to who understand hearing loss. I worry for his future as he doesn’t make friends easily, but I also know that he’s happy with just a few friends. I think that his new-found love of drama will help him immensely in the future! Joe

Emma is mum to Olivia (17), Bailey (14), Freya (7) and Fletcher (4). Fletcher has a mild hearing loss due to glue ear. Fletcher didn’t display an interest in social interaction prior to having grommets. He would play alongside other children but not with them. The first signs of interaction Fletcher showed with a friend was when he was nearly three. My friend’s son Ethan came over every Tuesday as I helped out with childcare. Ethan chased Fletcher and usually Fletcher wouldn’t respond but this time he ran round the table, both boys in fits of giggles. Having friends with children has helped me to support 28

NDCS Families • Autumn 2016

Fletcher. We have regular play dates where I take the children to places they can interact but I also join in with them to fill in the gaps in communication. I think at a young age, boys can be more interested in each other’s toys than playing together. With this in mind I’ve tried not to worry too much and have taken a slow, involved approach: playing together at home to teach him the rewards of two-way interaction. I’m hoping that now Fletcher’s a little older he has learnt to express himself and Fletcher to interact with people around him. 0808 800 8880 • www.ndcs.org.uk


HOW DO I...?

Kim is mum to Matthew (10) and Isla (5). Matthew is moderately deaf and wears hearing aids. Matthew has a delay in processing, his speech isn’t always clear and he often forgets to mention the subject. This means his friends often ignore him, walk away whilst he’s talking or talk over him. We regularly invite his friends over and we help him communicate and ensure he’s understood what’s happening. We explain to his friends the difficulties Matthew has which helps them to be more understanding. We take Matthew to disability football every week. He mixes well with the children and they all help one another with their disabilities. Matthew also does boxing and Tang Soo Do (karate); we delivered deaf awareness training for both groups and he has made friends at both. We’re members of Trafford Deaf Children’s Society. Being around other children who wear hearing aids has helped Matthew and he has made new friends there. I have concerns about Matthew’s future friendships. I worry others may not have an understanding of deafness, make fun of him and see him as an easy target. However, he’s come a long way, has good Matthew friends and is so much happier.

Join our family panel

“How do I… help my child cope with tiredness?” Next time in Families magazine:

If you have any tips, advice or suggestions to share, get in touch at magazine@ndcs.org.uk.

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

Do you know where your loc al deaf children’s society is? Vis it www.ndcs.org .uk/ localgroups to find out. If you think your child would benefit from attending one of our events, visit www.ndcs.org.uk/events to see what’s available near you. To find a deaf-friendly activity, or to help your local sports or arts club become more deaf-friendly, visit www.ndcs.org.uk/me2. For general deaf awareness tips to share with others, see www.ndcs.org.uk/deafaware. The Buzz website is a safe place for deaf children and young people to make friends, play games, share experiences and find out more about our deaf-friendly events and activities. Visit www.buzz.org.uk. NDCS Families • Autumn 2016 NDCS Families • Autumn 2016

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

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ROADSHOW

Technology to the rescue Mum Sue tells us how a visit from our Roadshow was able to help Isobelle (8), who is severely deaf, listen to music. The Roadshow visited Belle’s school during its tour of the south east, so Belle and I went along. Belle loves music and dancing, she even managed to teach the Roadshow team some moves, and I was hoping to find out more about technology compatible with Belle’s bone-anchored hearing aids so she could listen to music during a planned hospital stay. Belle tried some of the technology at the Roadshow and loved the bone conduction headphones. She was looking forward to borrowing a set from the National Deaf Children’s Society’s Technology Test Drive loan service. Unfortunately, there was only a couple of weeks until her hospital stay and the headphones are a popular item but the National Deaf Children’s Society’s Technology team were determined to make sure Belle could listen to her favourite songs during her week-long stay. Instead of the headphones, an order was put through for some direct input leads, which connect hearing aids to a music system, and these were rushed out to Belle, arriving in the nick of time, the day before her operation. Belle was delighted with the leads and was able to listen to her music and watch films on her iPad while she was recovering from her operation, which made all the difference. Sue and Belle

To find out more about our Roadshow and see when it’s visiting your area, have a look at www.ndcs.org.uk/roadshow. We have more accessories, including digital streamers, and lots of other products available to borrow for free from our Technology Test Drive loan service. Find out more at www.ndcs.org.uk/tech_drive. www.ndcs.org.uk/livechat • 0808 800 8880

Belle said:

I liked using the headphones in the hospital as I was confined to bed, but I can’t wait to test out the wireless ones so I can wander around while listening. Thank you for letting me borrow them.

Kerry from our Roadshow team said:

Without doubt, the best thing about being part of the Roadshow team is meeting young people like Belle, and it’s fantastic that coming along to a Roadshow visit helped her find out about technology that makes it easier for her to access the music she loves.

NDCS Families • Autumn 2016

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the best option. The scale of opportunities open to my son means he is happy, able to grow and will become better prepared for life as a Deaf adult.

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Scan the QR code to visit our website!


ASK THE EXPERT

Ask the

expert

Maria

Each issue a different professional shares their expert advice and gives information to help you support your child. This time Maria Cameron, an independent assessor, shares her insights. What does an independent assessor do?

The role of an independent assessor is to give an unbiased opinion on areas of concern parents have with their child’s progress and/or support. I work with all sorts of families with children from pre-school age up to post-16, with varying levels of hearing loss from mild to profound. As I’m also a speech and language therapist and Teacher of the Deaf, my role would usually be to assess a child’s current level of spoken language in terms of what they understand and what they say. Use of hearing technology and listening skills are assessed along with reading skills. I gather information to tease out what’s working for the child and what isn’t and then make recommendations about what should be put in place to ensure appropriate progress is made.

When might an independent assessment be needed?

They are usually requested by families that have concerns that aren’t being addressed. Maybe a request for an Education, Health and Care plan has been refused or a family may be dissatisfied with the support from their child’s speech and language therapist or Teacher of the Deaf. They may want a second opinion

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

on their child’s speech and language levels, appropriate Teacher of the Deaf support, the level of speech and language therapy required and the most suitable type of learning environment (mainstream, resourced provision or special school). These assessments can help inform Tribunal hearings but this isn’t always the case. Sometimes just having someone to support you and give you pointers on what to do next is really helpful.

How do you assess a child?

This depends on the child’s age and their range of needs. I use formal assessments where possible but also assess by observation, and with younger children, through play. Some children with complex needs find assessment materials difficult and I may use apps on the iPad to gain information about their language. Families usually come to my practice but I will assess a child at their home or school and provide school visit reports too if necessary. To see videos of other professionals who may support your child, go to www.ndcs.org.uk/whowillhelp.

How are the results of your assessment presented?

I usually produce a report in around two weeks. If I’ve completed formal assessments I provide the scores but also always include a description of what the child did and if this is as expected or not. I describe areas the child will find easy and what will be challenging. The scores are important but equally important are my observations about how the child copes e.g. have they asked for lots of repetition, did it take longer than expected, were they distracted, did they achieve well but was it hard work? The scores don’t tell the whole story.

Do you have any tips for parents who are struggling to get their child’s needs met?

Keep notes of phone calls and keep letters in their envelopes so you have evidence of post date. Emails are also good to provide a dated trail of correspondence. Be the parent who pesters until something is done. Visit all the schools the local authority wants you to look at and take notes. If all else fails then some independent assessments can sometimes help.

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Exam access arrangements

How can you make sure your child isn’t disadvantaged when taking exams? Some deaf children have lower levels of literacy and find it difficult to remember information due to the impact of language delay. Under the Equality Act schools and colleges must make reasonable adjustments to make sure exams are accessible. The only exception would be any adjustment that would mean a change in the skill or competency level being assessed. This article explains the access arrangements that many deaf students have for their exams. None of these arrangements are provided automatically to deaf students. There has to be evidence of need and of ‘normal way of working’. This means that the access arrangements should reflect the support your child already receives in the classroom and arrangements for tests and mock exams.

Tips

1

Don’t leave it until the year your child sits exams before you think about access arrangements. A ‘normal way of working’ has to be established.

2 If you think your child will

need access arrangements, discuss them with your child’s Teacher of the Deaf or SENCO (or equivalent role at college).

your child in 3 Involve decisions made about their access arrangements. Do arrangements work for them?

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Types of access arrangements Extra time 25% extra time to complete an exam paper can help deaf students who take longer to process what they’re reading.

Modified language papers Sometimes the sentence structure and wording of exam questions can make them more difficult for deaf students to understand. Exam boards try to make sure all papers are written in plain English but this isn’t always achieved. This means modified papers can be important.

Live speakers Voice recordings are played in some exams such as listening assessments for foreign language subjects. These can be difficult or impossible for many deaf students to follow. Instead, a ‘live speaker’ can read a transcript to the student and they can lip-read.

British Sign Language interpreters Students who use British Sign Language (BSL) can have questions signed to them and, in some situations, answer them through BSL (through a scribe – a person who writes on behalf of someone else).

This arrangement is not allowed for English, Welsh, Gaelic or foreign language exams.

Oral language modifiers These are people who can clarify the wording of a question during an exam if a student asks for help. They are only available to students who score less than 69 in a reading test often used by schools (known as a ‘standardised reading score’). This is a very low reading score meaning oral language modifiers aren’t an option for most deaf students. They also aren’t available in Scotland.

Exemptions Sometimes access arrangements can’t be made without changing what is being assessed. For example, for a speaking and listening exam for an English GCSE, it would be inappropriate to use BSL because that would be demonstrating an understanding of a different language. In these situations it’s possible to apply for an exemption to an assessment, which would mean the grade awarded for that qualification would be worked out using marks from other assessments. This can only happen if a student completes at least 60% of the other assessments that make up the qualification.

Read our factsheet on exam access arrangements for more information. www.ndcs.org.uk/exams

0808 800 8880 • www.ndcs.org.uk


THE SCHOOL YEAR

Supporting your child’s education this autumn Do your child’s new teachers understand their needs? Our personal passport and profile templates could help. www.ndcs.org.uk/passports

What about…? SATS Access arrangements can also be made for statutory tests in Years 6 and 9 (in England). This helps to establish a ‘normal way of working’ which will be necessary to apply for access arrangements for exams at 16.

Vocational qualifications Access arrangements can be made for assessments on vocational courses such as NVQs. This can include changing the method of assessment (e.g. providing a self-reflective diary through sign language instead of written English) provided that it doesn’t impact on the skill being assessed.

University exams Like schools and colleges, universities have to follow the Equality Act, meaning they must do what is reasonable to make sure a fair assessment takes place. It is reasonable to make the above access arrangements as long as they don’t affect the standards being tested (e.g. a BSL translation of text in a history exam which is assessing competence in being able to understand historical texts).

Has any extra support that your child needs been confirmed for the year ahead? If not, discuss this with your child’s Teacher of the Deaf or SENCO (or equivalent). If your child is turning 14 this year or starting to think about their future, read our factsheet on how you can support them to think about all the options in education and employment. You can download this from www.ndcs.org.uk/leavingschool. Most deaf children enjoy their time at school but if you’re worried about your child being bullied, we have guides for parents, schools and young people at www.ndcs.org.uk/bullyingguides.

What if the school or college says no? You or your child should talk about access arrangements to their Teacher of the Deaf or the person who coordinates support for students with additional needs (known as a special educational needs co-ordinator or SENCO at schools in England). Occasionally, school or college staff don’t know all the access arrangements that are available. If your child’s school refuses to provide an access arrangement you should discuss this with the SENCO (or equivalent if at college). If this doesn’t resolve the situation you can complain through the school or college’s official channels. Sometimes it’s the exam board that refuses an access arrangement. This might be because there isn’t enough evidence of need or because a ‘normal way of working’ hasn’t been proved. You won’t be able to communicate directly with the exam board about their decision – complaints need to be made through the school or college. If, after making a complaint, you’re not satisfied with the result, you can contact the Equality Advisory and Support Service (www.equalityadvisoryservice.com) or our Freephone Helpline for more advice.

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

NDCS Families • Autumn 2016

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Apps

to help with communication Communication apps are a great way for deaf young people to stay in touch with each other and share information using text, video and pictures. Here we take a look at some free communication apps and how they could help your child.

Top tips for online security It’s really important to understand the security and privacy settings of the apps your child is using and be aware of who they are interacting with online. Many apps have a minimum age requirement for a young person to sign-up for the service. It’s important to check online to find out what these are. For tips on protecting your child online, visit www.ndcs.org.uk/esafety, or go to www.nspcc.org.uk for information on understanding the internet, identifying the risks to children and where to find more advice.

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For more information on useful apps for deaf young people, including user reviews, go to our online apps resource at www.ndcs. org.uk/apps.

= Apple iOS = Android = Windows Phone = Blackberry

0808 800 8880 • www.ndcs.org.uk


TECHNOLOGY

Glide

Skype

WhatsApp

With Glide your child can quickly record and send video messages of up to five minutes in length. Family and friends can watch videos live as they are being recorded or later as a message. Deaf young people could use Glide to communicate directly with each other using British Sign Language (BSL) or send a BSL video message.

Skype lets your child set up individual or group live video calls. Deaf young people could set up a Skype chat and use BSL to communicate with each other in real time. Your child can also send instant text messages using Skype.

Your child could use WhatsApp to text chat in real time. Unlike Viber, you can’t make video calls but you can use WhatsApp to exchange files with other users such as documents, videos and audio messages.

As a deaf BSL user, I found Glide useful as you can set it to start recording and you can sign away; there’s no need to hold any buttons down to record. The other thing that’s great is the video quality. It’s not high definition, but it’s quite clear and certainly good enough to use to sign to other people. I also like the address book recognition feature. You can set the app to sync with your contacts and it will tell you if you have any contacts in your phone that have Glide. Glide also has the ability to send instant messages, which is useful when you don’t want to send a video. I would recommend the app to anyone who is after a free video messenger. Aaron (18) who is profoundly deaf Aaron

Skype is good for sending messages to my friends across the world. Sometimes I create a group of my friends, especially those who are deaf or hard of hearing, and we all text in one group. Sending photos on Skype is good as one friend of mine doesn’t have a phone, so sometimes I keep in touch with him on Skype and send him photos. Video is the main reason why I use Skype, especially with friends who are deaf. Because they use BSL or another sign language, I first record myself in a video and send it to them rather than text them. I always like to have a live chat with my friends and communicate with them using BSL or by voice. Skype needs a good internet connection and the app memory size is large. Sending photos through Skype is not as effective as using WhatsApp. Ammaar (17) who is profoundly deaf Ammaar

Facebook Facebook is a social networking app that allows your child to create an online profile where other people can connect with them and follow their updates. It’s useful for keeping in touch with friends, family and colleagues and also lets them send text messages, share ideas and plan and organise events. I use Facebook daily. I like it because you can share posts and write your status on the timeline so your friends can see it. I like to use it to send messages to my friends. There’s another app called Facebook Messenger that connects to your Facebook account, but you can still send messages on Facebook without it. Grace (15) who is profoundly deaf

WhatsApp is a very good app for sending messages. I like how quickly and easily the messages come through. When sending photos, the best part is that if someone sends a ‘selfie’ or a picture, then it automatically saves it to your photo library on your phone. In my opinion I wouldn’t use WhatsApp for videos, mainly just photos and texting. I’ve also used the share location feature and I’ve used the microphone to send spoken messages. Aliyah who is profoundly deaf Aliyah

GroupMe Your child can use GroupMe to have group text chats with other GroupMe users. It’s like having a private chat room for their small group. You don’t need the GroupMe app to chat, simply add anyone from the phone book and they can join the GroupMe chat using SMS texting. You can also use GroupMe to share links, share your location using a map, keep in touch with family and organise events.

Viber Viber lets your child send instant messages and make video and voice calls to other Viber users, on any device and network. They can also draw doodles, share locations, record audio messages and send files.

Grace

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

NDCS Families • Autumn 2016

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North, south,

Group members from across the UK tell us why What is a local group?

Local groups (sometimes known as local deaf children’s societies) are a fun and informal way to meet other families with a deaf child. Covering all age groups and levels of hearing loss, they run social events and activities, provide support to parents and carers and give deaf children the chance to meet outside of school. We have more than 100 local groups across the UK; each one is run by a group of volunteers who are usually parents of deaf children, working with local professionals to support other families. They put a lot of time and energy into running a group and do it all for free. Although we work closely with local groups, each group is independent. This means they can run activities and events that meet the needs of families in their area. For more information and to find your nearest local group refer to the ‘Meeting parents of deaf children near you’ insert included with the print version of this magazine or visit www.ndcs.org.uk/localgroups.

My daughter Emma was starting school last year and I was worried about how she would cope with a new, noisy environment. Being part of Trafford Deaf Children’s Society meant that I could talk to other parents who had passed the milestone already. It helped me to calm down and remember to take things one step at a time. Seeing older deaf children at group events who are happy and doing well has also been reassuring, not only for me but for Emma too!

We joined Grampian Deaf Children’s Society as young children and have been involved for almost 20 years now. When we were younger, we were both the only deaf child at our schools. Although this changed as we progressed through the education system, early on the local group was the only way for us to meet children similar to us. Last year we set up a youth group specifically for deaf teenagers. We felt it important they have the chance to socialise away from their parents. We also enjoy being positive role models for the teens. Having been involved in Grampian “Supporting the teenagers and Deaf Children’s Society for so long, seeing them grow we have plenty of in confidence and good memories. form important When we were younger the activity friendships is weekends the group brilliant.” used to organise were always lots of fun. Now, supporting the teenagers and seeing them grow in confidence and form important friendships is brilliant. Another (more cheesy!) reason that we’re happy to be part of the group is that it helped us meet. We’re now engaged and are getting married later in the year. Bob and Kirsty – members of Grampian Deaf Children’s Society

Andi – member of Trafford Deaf Children’s Society 38

NDCS Families • Autumn 2016

0808 800 8880 • www.ndcs.org.uk


LOCAL GROUPS

east and west their local group is something to shout about.

I’ve been part of the group for five years now, first as a member but now as the chairperson. We first joined when my daughter Lucie was being implanted and it was great to be able to talk to parents who had been down the same route and ask all the questions we had without feeling silly as you sometimes can with professionals. Over time it’s gone full circle and we’re now in a position to give advice and support to others. Our group caters for all ages: Little Gems is the toddler group, Fun Club is for the five to eight year olds and then there’s a monthly youth club for the older ones. We also organise a number of big events which are a chance for all of the families to get together. Our annual Halloween party where all the children dress up is always a highlight! Justine – Chairperson of Stoke and North Staffordshire Deaf Children’s Society

“Our annual Halloween party where all the children dress up is always a highlight!”

Lucie with sister Rebekah

My daughter Rhiannon has made some very solid friendships through Waveney Deaf Children’s Society. She loves signing to them and it has also helped to build her confidence in speaking. My best memory is of seeing a picture that was taken of her and a close friend in the middle of signing to each other whilst watching a show. The picture spoke a thousand words! I have three other daughters and being involved in the group has been great for the whole family. It’s lovely to see all of the kids being included and having fun at the events. The group has helped to open all of our eyes to the deaf community. Kerry – member of Waveney Deaf Children’s Society www.ndcs.org.uk/livechat • 0808 800 8880

My husband John and I have two children: Morgan (14) is deaf with two cochlear implants and George (8) is hearing. We’ve been members of Exeter and South Morgan Devon Deaf Children’s Society for over 10 years. Over the years we’ve done everything with the group, from visits to theme parks and local tourist attractions to weekends away and caravan holidays. As parents, the support we got from the group when Morgan was younger was particularly helpful. Having no experience of deafness before, I remember feeling very isolated initially. Having the chance to meet other families who were experiencing the same things as we were gave me confidence and helped me feel like I could cope with whatever came our way. It’s been nice for Morgan to meet and grow up with children that are similar to her. When she’s with them she doesn’t have to worry about standing out which has encouraged her to take part in things which she’d normally be more reluctant to do, such as abseiling and water sports. Finally for George it’s been helpful for him to realise that it’s not just Morgan who’s deaf. He’s also had the chance to meet with other siblings who are hearing, which has helped him make some good friends. Paula – member of Exeter and South Devon Deaf Children’s Society

NDCS Families • Autumn 2016

39


Reviews

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

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

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

0–4

5–10

11–13

14+

A Birthday for Ben By Kate Gaynor Special Stories Publishing, 2009 £7.50 5–10

Ann-Marie: The story about Ben was great and it was lovely to discuss the various issues he faced with my son Joel as they were all relevant to him. Joel turned seven recently and, like Ben, didn’t want a birthday party. Reading the book was sad in a way as it gave me an insight into Joel’s feelings, but also positive as we could discuss them. This has improved our communication about things that are worrying Joel. I believe the book should be read in schools, especially ones with deaf children in them. I took it in to Joel’s school and read it at the lunchtime sign club and all the children loved it and asked good questions. I also read it with Joel’s younger brothern who, at four, is starting to understand that Joel is different from him. 40

NDCS Families • Autumn 2016

Joel: The book was: • helpful – gave Mummy ideas for things to do • special – because I hadn’t seen it before • different – I liked the different ideas for the party and want Mummy to do them at my next birthday party. Ann-Marie, mum to Joel (7) who is severely deaf and wears hearing aids.

Joel

0808 800 8880 • www.ndcs.org.uk


REVIEWS

Waiting for a Sign By Esty Schachter Lewis Court Press, 2014 £6.35 11–13

14+

I loved this book about a girl called Shelly and her deaf brother Ian healing their friendship. My favourite part was a sit-in at Ian’s school to stop it closing because the author portrays deaf people chatting using sign language but without talking. I also liked the poetry night because of its juxtaposition with a dreadful tragedy that happens on the same night. However, I didn’t like the beginning because Shelly and Ian aren’t friends and haven’t been since he started going to a deaf school and making new friends. Their dislike for each other is startling. They have a transformative argument about how they communicate with each other. After the argument, Ian is introduced to Shelly’s friend, Lisa. They become friends, but Shelley starts feeling increasingly left out – until a tragedy strikes. The reader is left wondering how Ian and Shelly will cope with the tragedy and whether they will ever be able to remain friends. My favourite character is Lisa because she’s fun, cheerful and cares a lot about Shelly. My least favourite characters are Shelly and Ian’s parents because they don’t make much of an effort to sign with Ian in the beginning. However, these characters are developed later in the book. It’s an amazing book which shows what it’s like for hearing people with deaf siblings. Sign language is written in italics which is inventive and accurately shows that sign languages are languages in their own right. Robert (14) who is severely to profoundly deaf and wears hearing aids. Robert

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

Collins Big Cat: Playing Story Creator HarperCollins Publishers Ltd iOS Free 0–4

5–10

This app is an animated and interactive storybook for young children, which can be personalised using your own narration. The Collins Big Cat apps are designed to encourage the development of early reading and writing skills. The app was easy to use and my daughter grasped the concept and loved the story-making function. She liked that she could help to create stories and listen to stories independently. She also loved that we could add our voices to the story. The read alone function was not for my daughter as she has not yet learnt to read, and she would have liked a few more character and scene options. This app will support her reading and was great for getting her to use her imagination. Sherrie, mum to Megan (4) who is profoundly deaf and wears Megan and cochlear implants. Sherrie

NDCS Families • Autumn 2016

41


Helpline

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.

What do you think of our information?

How radio aids can help

A guide for parent

s

Q. How do I find a deaf-aware childminder?

A. If you want to find a childminder who is already

deaf aware, we suggest speaking to your Teacher of the Deaf and local deaf children’s society for any contacts or recommendations. Your local authority’s Local Offer (in England) might have details of specialist childminders or you can speak to your local family information service. If your childminder is not currently deaf aware, your child’s Teacher of the Deaf should be able to advise them. You can also give the childminder our resources at www.ndcs.org.uk/deafaware and www.ndcs.org. uk/supportingachievement. They can become a professional member of the National Deaf Children’s Society for free and receive exclusive access to our website, magazine, e-newsletters, Freephone Helpline and publications.

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

42

NDCS Families • Autumn 2016

How Radio Aids Can Help Earlier this year Karlie, mum to Emma-Mae (3) and Elizabeth (2) who are moderately deaf, reviewed our How Radio Aids Can Help resource to help us improve it. She told us: All the information in the resource was useful and informative. I was able to skip through any information not relevant to myself/my children due to a clear layout which follows a natural progression of information. Some of the information is quite technical but I’m not sure how this could be explained any better as the technicality is necessary to get the best from the radio aids. There are a few other tips that could be included in the resource such as: • The child should be seated in the classroom in an appropriate place so as to reduce any other unnecessary distractions. • The teacher should speak at a normal classroom level. Karlie is a member of our Parent Review Panel which you can join by signing up to NDCS Listens. www.ndcs.org.uk/ndcslistens Karlie

0808 800 8880 • www.ndcs.org.uk


OUR RESOURCES

What’s new from us? People you may meet What type of information is it? New content on our website: www.ndcs.org.uk/people. Who’s it for? Parents What’s it about? Information about the professionals, such as audiologists, speech and language therapists and Teachers of the Deaf that may offer support to you and your deaf child. It also includes suggestions for making contact with other people who might be able to help such as the Deaf community or a local deaf children’s society. You might also like: Our My Life, My Health (www.ndcs.org.uk/ mylifemyhealth) resources which can support your child to access healthcare services independently.

Help improve support for deaf children in your area What type of information is it? A factsheet available to download from www.ndcs.org.uk/ofsted. Who’s it for? Parents in England. What’s it about? Information about how to get involved with the Ofsted and Care Quality Commission (CQC) inspections of support for children and young people with special educational needs and disabilities (SEND). You might also like: Our Local Offers and Special Educational Needs (SEN) (England) factsheet, downloadable from our website.

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.

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

Teaching phonics to deaf children: Guidance for teachers What type of information is it? A booklet available to download from www.ndcs.org.uk/phonics. Who’s it for? Anyone who teaches phonics to primary school-aged pupils, such as classroom teachers and teaching assistants. What’s it about? Guidance to make it easier to ensure that deaf pupils can access phonics teaching and achieve as much as hearing pupils. You might also like: our phonics resource for parents – Phonics and the Development of Your Child’s Reading and Writing Skills, also downloadable from www.ndcs.org.uk/phonics.

NDCS Families • Autumn 2016

43


? n o s ’ t a h W EE events coming FR c ti as nt fa f o ts lo e av We h f just a few. up and here’s a taster o Weekend programme for 11–18 year olds At our weekend events young people get involved in many sports and creative activities. Events are age-specific and targeted at a broad range of young people, with the chance to learn new skills and make friends while having lots of fun. Multi-Sport Weekend 21–23 October, Burnley (age 14–18)

This information day is ideal for families with a deaf child aged two to four years who want to learn more about how to support your child at school, how to enforce your rights and to share tips and experiences with other families with deaf children. 15 October, Colchester

Get Creative Weekend 28–30 October, Essex (age 11–15)

12 November, Northern Ireland

Get Creative Weekend 18–20 November, South Wales (age 11–15)

18 February 2017, South West

Get Creative Weekend 24–26 February 2017, London (age 11–15) Multi-Activity Weekend 4–5 March 2017, Yorkshire and Humber (age 11–15)

Day events for 8–16 year olds Young people won’t have time to get bored on our one-day events – they’re packed full of creative activities. Get Creative Day 1 October, Leicester Get Creative Day 4 February 2017, North Wales

Weekends for Families with Deaf Children aged 0–2 years Aimed at families who haven’t been on one of our events before, these non-residential weekends are an opportunity to find out more about deafness, communication and learning through play and reading. They will be led by our experienced staff, and specialists will join us to share their knowledge and understanding. 8–9 October, Bexley 15–16 October, Bristol 22–23 October, Scotland 29–30 October, Bracknell 5–6 November, Nottingham 19–20 November, Huntingdon 26–27 November, Rochdale

* Our deaf-friendly swimming projects in England and Scotland are funded by Sport England and the National Lottery through the Big Lottery Fund respectively.

25–26 February 2017, Northern Ireland 11–12 March 2017, Scotland

44

Starting School – Education rights and responsibilities

NDCS Families • Autumn 2016

28 January 2017, Oxford

Deaf-friendly swimming gala Our deaf-friendly swimming galas* are an exciting opportunity for deaf swimmers to meet, have fun and compete together in a friendly and supportive environment. The galas are open to 8–18 year olds who can swim 50 metres or more, but younger confident swimmers are also welcome. These events are suitable for both experienced swimmers and first-time competitors and we provide communication support. 15 October, Hull To find out more please see www.ndcs.org.uk/swimming or email swimming@ndcs.org.uk.

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

We hold free events all over the UK for deaf children, young people and their families. Download our events calendar from www.ndcs.org.uk/events. 0808 800 8880 • www.ndcs.org.uk


EVENTS

s d n e i r f w e n g n i k Ma If your child goes to a mainstream school, they may not have as many chances to meet other deaf children. Mum Pip and son Ethan (8) tell us why our First Time Away Weekends are a great way to make new friends, learn more about deafness and have lots of fun!

Ethan

First Time Away Weekends A night away from home can be a big step for a child and our First Time Away Weekends can help children aged 8–12 to be more independent. It involves one night away at an activity centre, where children can: • learn about looking after themselves and their belongings • try some fun activities and gain more confidence • meet other deaf children and make new friends. Visit www.ndcs.org.uk/events to find an event near you. www.ndcs.org.uk/livechat • 0808 800 8880

Ethan goes to a mainstream school where he’s the only child with a hearing loss. I thought it would be nice for him to go on an event with children like him and take part in activities run by people who understand hearing loss. Ethan was born prematurely and has some delay in emotional and social development which means he can get tearful if things aren’t going his way. He had to be collected when he stayed away from home before with the Beavers so I was worried if he would settle. But Ethan was excited about staying over and had no worries as far as I know! I was confident when I left as the staff were friendly. In the evening I received a phone call as the staff were concerned that Ethan wasn’t joining in. I gave some advice and knew that they would call me back if they had any other problems. A text later in the evening reassured me all was fine. Ethan was very excited when I collected him – and a little tired! He showed me the signs he’d learned and introduced me to the friends he’d made. He said he’d had an awesome time. The staff were excellent with Ethan – kind, gentle and patient people with vibrant and enthusiastic personalities. He seemed to get on well with everyone. Ethan has now decided that he’d like to learn some sign language and he’s more aware of how other children are affected by hearing loss. Pip is mum to Ethan, who has a bilateral sensorineural moderate hearing loss. I went on the event because I thought it would be fun and I wanted to make new friends who are deaf like me. I don’t see other deaf children very much. The best bit was going outside and exploring and Alison [a volunteer] and I had the job of making a cardboard car, which I loved. I built shelters, made fires and whittled sticks. Calen (one of my new friends) and I made a fire which lasted for four minutes and 10 seconds – can you believe it? It was the longest burning fire! I liked seeing everyone’s hearing aid designs – and everyone liked my Minion lugs. I learned about cochlear implants from a friend I made called Marshall. The event was great fun, and the staff and volunteers were absolutely amazing. Ethan

NDCS Families • Autumn 2016

45


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 senior lecturer because… I enjoy working with students and it’s satisfying to see them graduate and get the job they want. I teach forensic biology and I’m the course leader for MSc courses in forensic science. I also enjoy research work and knowing I’ve made a difference. One of my high profile projects included developing a technique to distinguish between identical twins from crime scene stains. I studied for a degree in Physiology, before achieving an MSc in Neurosciences. I’m profoundly deaf and have had very little help along the way. I struggled with hearing lecturers and back then, I was often told: ‘If you’re struggling, it might be best if you left’. I put my success down to my tenacity and the encouragement of my parents. I can’t use the phone and rely heavily on email and my hearing aids. I also use social media which helps a lot. I’m a black belt in Jiu-jitsu and teach children at a club. Graham Williams

I’m a senior internal communications manager because… I’ve been an avid reader and story-writer since I was old enough to read and write. I studied business and marketing at degree level and I’m a chartered marketer at postgraduate level. I write and deliver communications plans and strategies for projects about employee engagement. I was born deaf in one ear and sometimes struggle with my balance, especially when walking down stairs. I always tell new colleagues, so they know why I’m slow when using the stairs and don’t think I’m being lazy if I use the lift. In meetings, I try to sit with my right ear facing towards colleagues so I can hear them better. I support communications projects for the Diversity and Inclusion team, which has been a wonderful experience, and I was able to share my story with 38,000 colleagues as part of Deaf Awareness Week 2016. I love my job and I think that, with a positive outlook, there are no barriers to success. Kerryanne Delbridge 46

NDCS Families • Autumn 2016

ROLE MODELS

I’m a business owner because… I love the variety and I love supporting staff and encouraging them to do well. My father was running a property management business when a local college approached him about offering host families for international students. I decided to take the project on as a one-off but six years later it’s been so successful that I have partnerships in five countries. I now own or co-own five companies mainly focused on property and facilities management. I also set up a company delivering training in deaf awareness and British Sign Language to businesses in the public sector. I‘m profoundly deaf and I have admin staff who help me proofread my written work. I rely on email and use an interpreter for meetings and training events. I recently became an affiliate member of the Institute of Leadership and Management. I won the Employer of the Year award at the Make Your Mark Awards 2015 and won Best Employer at the Northern Business Star Awards. Alison Stephenson

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

0808 800 8880 • www.ndcs.org.uk


For residential and day pupils aged 3 - 19 years

Come and see us

Open day for families – Thursday 13 October 2016. An opportunity to see for yourself what St John’s can do for your child.

"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 John’s School for the Deaf, Church Street, Boston Spa, West Yorkshire, LS23 6DF

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

Where every voice is heard and celebrated


Weâ&#x20AC;&#x2122;ve been looking back 70 years...

To celebrate our 70th anniversary, we have opened an exhibition of archive materials in Arlington Arts Centre, on the Mary Hare campus. Open from 9am - 5.30pm, Monday - Friday, until October.

and now weâ&#x20AC;&#x2122;re looking forward! Year 7 Entry Information Day - 30th September 2016 Year 7 Entrance Assessments are taking place throughout September and October. 6th Form Information Day - 13th October 2016 To book your place visit our website: www.maryhareschool.org.uk/events

Families magazine, issue 42 (autumn 2016)  

The autumn issue of Families magazine is packed with stories from families and information about childhood deafness including: • Natalie an...

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