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Winter 2015 2014 • Issue 39 35

towards a world without barriers...

towards a world without barriers...

Helping Harry hear A family’s rollercoaster journey


OFSTED CARE REPORT 2015

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

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.


15

Hayley sees the funny side

34 The SEN reforms one year on

Hello...

38 Starting a local group

This is a magical time of year for children who celebrate Christmas, but for deaf children big family gatherings can sometimes be a bit overwhelming. With lots of noise and excitement, they can find it frustrating and exhausting trying to follow what’s going on. P28 offers lots of ideas of small adjustments that can make things easier and help special occasions like Christmas be more deaf friendly. If you’re watching TV and films as a family this winter then check out our feature on p36–37 for ideas and products that could help your child hear the TV better. Have you just found out your baby has a hearing loss and are you wondering what to do next? You’re not alone. Our cover story on p18–19 describes Lucie and Scott’s journey through the last two years since their baby son Harry was diagnosed profoundly deaf. Finally, we’re pleased to announce that our new and improved Roadshow bus is on the road, bringing deaf awareness, information and understanding to schools and communities all over the country. Please see p30 for more details of what’s new and how you can book a Roadshow visit for your child’s school. Wishing you and your family a merry Christmas and a happy and healthy 2016.

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: Alexandra Jordan • Production Manager: Phillip Barros • Distribution: Maria Piazza Advertising sales: Anne Marie Fox, Landmark Publishing Services, 7 Adam Street, London WC2N 6AA. Tel: 020 7520 9474. Email: amf@lps.co.uk Printing: Printed in the UK by The Magazine Printing Company www.magprint.co.uk NDCS Families is published by the National Deaf Children’s Society (NDCS). NDCS is a registered charity in England and Wales no. 1016532 and in Scotland no. SC040779. Opinions in this magazine do not necessarily reflect the policies and views of NDCS. NDCS supports families to make informed choices and no one option will work for all families. This magazine highlights some of these options. For further information, see our website or call our Freephone Helpline. Advertisements do not necessarily imply endorsement by NDCS. All rights reserved. Unauthorised reproduction in part or whole is prohibited without written permission. Photographs and artwork are accepted on the basis that NDCS and its agents do not accept liability for loss or damage to them.

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

Contents Winter 2015 • Issue 39

NDCS

4 News & views 6 Comment 8 Campaigning 10 Fundraising

Children, young people and families

13 Share and support 15 Sounding off! 17 Our superstar 18 Early years COVER Helping Harry hear 20 Primary years “Cholesteatoma wasn’t classed as a hearing loss” 22 Transition years Never give up 24 Young people A helping hand for deaf children 26 Additional needs Deaf children with dyspraxia 28 How do I...? ...make celebrations like Christmas deaf friendly?

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

Role models

46 When I’m a grown-up Get in touch NDCS Families, Ground Floor South, Castle House, 37–45 Paul Street, London EC2A 4LS Telephone: 020 7490 8656 (voice & text) Fax: 020 7251 5020 Email: magazine@ndcs.org.uk Website: www.ndcs.org.uk Freephone Helpline: 0808 800 8880 (v&t) NDCS Families • Winter 2015

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news & views

Follow NDCS on Twitter: 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

Cycle for NDCS We’ve got charity places available in the Prudential RideLondon-Surrey 100 taking place on 31 July 2016. Commit to raising £550 and the place is yours. Email ndcschallenges@ ndcs.org.uk to apply.

Raising the Bar 2016

sing Rai the

Our competition to find young deaf music, dance, and – new for 2016 – drama stars, will be back next year with a masterclass taking place at the mac Birmingham on 18 and 19 June. Competition details will be available after Christmas – check our Facebook page at www.facebook. com/NDCS.UK and www.ndcs.org.uk/raisingthebar for more information.

02/06/2015 11:45

Looking for a quirky Christmas present?

Sign a loved one up for a skydive, run or cycle event and ask them to raise money for us at the same time. Visit www.ndcschallenges.org.uk for lots of ideas of fundraising challenges.

Have you joined NDCS Listens yet?

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

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NDCS Families • Winter 2015

Deaf tip awareness

our Stand with y – ght face to the li an gc poor lightin ding make liprea difficult.

Deaf teenager wins top award for campaigning We’re delighted that 18-yearold Bethany Eason, former member of our Young People’s Advisory Board, has won a Princess Diana Award for most Courageous Citizen 2015 for campaigning for deaf children! Bethany says “I’m still on cloud nine after receiving the award in Birmingham in April. It was amazing to meet other inspirational people, which has also motivated me to do much more.” Bethany also received £500 which she kindly donated to us. Well done and thank you Bethany!

Education support needs in Wales

e Plealsp he

We urgently need your help to ensure changes to current statements and Individual Education Plans in Wales will work for deaf children and their families. The Welsh Government has published a draft law which would change the way in which children’s education support needs are assessed and planned for. We welcome some aspects of the proposals, but also have major concerns, for example that the changes could make it more difficult to ensure specialist professionals are involved in a child’s assessment of need. You can help us shout about the needs of deaf children and young people by taking part in our online action, which makes it quick and easy for you to reply to the Welsh Government’s consultation on the reforms and highlight key concerns. It only takes a few minutes but could make a big difference. The deadline is 18 December so please take action now. To take part, please visit www.ndcs.org.uk/IDPWales. Thank you! 0808 800 8880 • www.ndcs.org.uk


NEWS & VIEWS

> Cholesteatoma

> Never give up

Nine-year-old Megan’s cholesteatoma was a whole new concept to her family page

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Mobile calls directly to hearing aids The Phonak EasyCall can be attached to any Bluetooth enabled mobile phone to link it wirelessly to Phonak hearing aids – so the conversation is streamed directly to your child’s hearing aids. We now have this new product available to loan from Technology Test Drive – for more information go to www.ndcs.org.uk/technology.

Scottish families have their say on NDCS youth events In July 2015, 28 families from across Scotland attended our Have Your Say! family consultation events to tell us what deaf children, young people and their families want and need from our youth events. We also had 80 responses to our online surveys. Your opinions determined our level of registration with the Care Inspectorate, enabling us to continue delivering youth residential events, and will inform the future of our activities in Scotland. Thank you to those who took part for your time and opinions. A report of the event will be distributed to families in Scotland by January 2016.

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

> Deaf with dyspraxia

Find out why Helen battled for years to get son Nathan into the right schools page

Two families share their experiences of having a deaf child with dyspraxia

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page

26

Inspirational young fundraiser Five-year-old Esther Harflett was shortlisted for the Signature Inspirational Young Person Award. Esther organised a Fingerspellathon at her school, learning to fingerspell 61 words from ‘cat’ to ‘daughter’, and raised £300 for us. Could you fundraise for us? Visit www.ndcs. org.uk/fundraising for lots of ways you can support us.

Big changes in Northern Irish education In 2015 the Northern Ireland Education Authority was created and took over the responsibilities of the Education and Library Boards. Also, the Special Educational Needs (SEN) Bill was introduced to the Assembly, which will lead to major changes in how deaf children are educated in Northern Ireland. These changes are scheduled to be brought in at the start of the 2016 school year with a five year transitional period. Major changes proposed by the education minister include the following. • Young people over 16 having the right to appeal to a Tribunal if they disagree about the SEN support they’re receiving. A pilot will be launched for under 16s. • The introduction of a new mediation process if the Education Authority, schools and families disagree, hopefully resolving disagreements without contentious and costly legal proceedings. • The time period for assessing a child for a statement being reduced from 26 to 20 weeks. • A school’s Board of Governors being legally responsible for ensuring that a young person is getting the correct support. They will also be trained in SEN. The current SEN Bill is much improved on previous versions but we’re still campaigning for all SEN spend to be fully accounted for and specialist SEN services to be inspected. To keep up-to-date on the SEN Bill and our other campaigns in Northern Ireland have a look at our new campaigns webpage www.ndcs.org.uk/NICampaigns or follow us on Twitter. @NDCS_NIreland NDCS Families • Winter 2015

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COMMENT

Scottish Parliament considers deaf educational attainment

The Scottish Parliament has published a report outlining its recommendations to close the attainment gap between deaf and hearing children and young people. The report recognises that some approaches currently work well for deaf learners, so the Parliament is calling on this best practice to be more effectively shared across Scotland. It also makes suggestions to address some of the existing challenges, such as ensuring there are enough properly qualified Teachers of the Deaf in Scotland. We’re committed to helping translate some of the recommendations into improvements for deaf learners. For more information contact campaigns.scotland@ndcs.org.uk.

Sign up to Christmas! Please join us to sign some Christmas songs and raise money for NDCS. Here at NDCS we’re committed to improving deaf awareness, and with Christmas and other festivities coming we want to make the holiday season as deaf friendly as possible. From talking to families, we know that noisy celebrations and busy get-togethers can be challenging for deaf children and young people, who can feel left out. In addition to the article on p28 do take a look at our tips to help deaf children and young people feel included at Christmas at www.ndcs.org.uk/xmas and share with anyone spending time with your child over the holidays. Every Christmas, our staff get together to learn how to sign our favourite Christmas songs before holding performances in busy venues, such as Leicester Square, while raising funds through a collection. Everybody who takes part delights in coming together to learn, or brush up on, their Christmas signs. But why should we have all the fun? This year, I’m inviting you to join our Signed Songs fundraising campaign. Taking part in Signed Songs is a fantastic opportunity to embrace the spirit of Christmas: learn to sign some Christmas songs and carols while raising funds to help us support deaf children and their families. 6

NDCS Families • Winter 2015

If you know a group holding a carol performance this Christmas, why not ask if they can add a signed song to their repertoire and organise a collection for us? You don’t need to have any knowledge of British Sign Language; it’s a perfect opportunity to learn! Whether it’s at school, a choir or your office Christmas party, Signed Songs is a brilliant way to raise deaf awareness, have fun and raise vital funds for us. To find out more about this event and the resources available visit www.ndcs.org.uk/signedsongs. Thank you for your continuing support – and I wish you a very happy Christmas!

Susan Daniels OBE Chief Executive

0808 800 8880 • www.ndcs.org.uk


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

Established 1829

Interested? Come and visit or go online: www.deaf-school.co.uk Telephone: 01302 386733

Doncaster Deaf Trust

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

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

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

NDCS Magazine Advert D4.indd 1

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

12/01/2015 15:46

NDCS Families • Winter 2015

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Samantha’s

success What would you do if funding for your child’s Teacher of the Deaf (ToD) was cut? The support that ToDs provide to deaf children and their families is vital. When we’re called on to help challenge cuts to services, the cuts most often involve funding for ToDs. So, when we heard the organisation providing ToDs across Buckinghamshire was planning a restructure that might reduce the number of ToDs by a third, we galvanised parents to challenge the decision. One parent, Samantha, was concerned about the impact it might have on her threeyear-old son Leo, who is profoundly deaf. Samantha isn’t a seasoned campaigner but felt she couldn’t just sit back and wait to see if the council would reduce the support that Leo depends on. Along with 47 other concerned parents, she emailed the council to tell them how important ToD support is for deaf children. Samantha told us why she felt she had to take action.

I heard via Mix 96 (our local radio station) that £121,000 of cuts were being made to Buckinghamshire's specialist education budgets, which include ToDs. This would affect the support my son gets as well as other deaf children in the area. “My little boy Leo was diagnosed as profoundly deaf at six weeks old, and went on to receive bilateral cochlear implants at the age of nine months. Leo has already had two ToDs that have left and not been replaced. He’s behind

8

NDCS Families • Winter 2015

his peers and without the continued, regular help from his ToD, I worry that his deafness will drastically interfere with his development and education. “Not knowing many parents in my area in the same situation, and without time to waste contacting people, I decided to start a petition. I was hoping to try to get Buckinghamshire County Council to revisit their decision. After sharing the petition on social media I had over 100 signatures in 24 hours. “After this a family member got me the contact details of our local councillor. A few emails and a couple of phone calls later, the campaign and petition were on the agenda for the next council meeting. In the end it wasn’t necessary to go to the meeting as the council decided to increase the level of ToD support rather than cutting it. “If other parents want to do what I did, I’d say, stay determined, stand your ground. If you have a group of you in the same situation all the better, but if not just keep fighting. You’ll get the result you want eventually. You really can make a difference. If you want to take a stand for deaf children like Samantha did, then join our Campaigns Network. We’ll alert you when deaf children’s services are under threat of funding cuts and we’ll ask you to take action to protect them. We can’t do any of this without motivated campaigners like you – please sign up today at www.ndcs.org.uk/campaignsnetwork.

“You really can make a difference.”

0808 800 8880 • www.ndcs.org.uk


CAMPAIGNING

British Sign Language triumph in Scotland! British Sign Language (BSL) legislation was finally passed in Scotland in September, but what does this mean for the language? The British Sign Language (Scotland) Act 2015 was passed in the Scottish Parliament on 17 September 2015 with unanimous support from MSPs and the Scottish Government. As the first of its kind in the UK, the legislation aims to embed the language more fully into Scottish society and culture by ensuring public authorities promote and raise awareness of it through BSL plans. We hope this groundbreaking legislation will become a foundation for the promotion of the language in Scotland long into the future.

Did you know? The passing of the Act follows a decade of dedicated work on BSL in Scotland, with initial proposals for legislation being put forward by the former MSP Cathie Craigie, and latterly by Mark Griffin MSP, who reintroduced the Bill in October 2014. The ultimate passing of the legislation marked a historic moment for the entire deaf community and for Scotland as a whole.

What next? The challenge is now for the Scottish Government to set out an ambitious national plan that will drive progress for deaf children and their families in areas such as closing the education attainment gap and strengthening early years support. Our recommendation is that the national plan focuses on the principles of child-centred provision and early intervention, to ensure deaf children are given the best start in life. www.ndcs.org.uk/livechat • 0808 800 8880

In particular we recommend it addresses:

1. Closing the education attainment gap between deaf and hearing learners.

2. Minimum qualification levels in BSL for education professionals, to ensure deaf learners are supported by communication support workers who are able to accurately interpret what the teacher is saying.

3. BSL becoming an accredited school qualification and having the same status as other languages.

4. Improving the availability of Family Sign Language and other family support.

5. Ensuring the aspirations of the Bill are appropriately resourced. We strongly believe that if fully implemented, the legislation will strengthen the position of the language in Scotland and ultimately help create more choices and opportunities for deaf children and young people. We’re committed to working in partnership across the sector to support the implementation of the legislation in every way we can. For more information on the legislation contact campaigns.scotland@ndcs.org.uk.

NDCS Families • Winter 2015

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Raising notes for NDCS Morris and Alex organised a concert to raise money for us after we supported their family.

f

10

We took our family – Rosa (9), Leo (7), James (4) and George (2), to an NDCS family information event in Liverpool in January 2015, after finding out James had mild to moderate bilateral hearing loss. The weekend was really informative and helped us come to terms with his diagnosis and realise that the future could be just as bright for James as for anyone. We decided then that we’d like to fundraise for NDCS to say thank you for the support we received. “We’re both professional violinists so we chose to organise a small concert, however this soon started growing and we decided the bigger the event, the more we could raise for NDCS! After setting the date and booking the orchestra, who all donated their performance fees to NDCS, we began promoting our event. “We wrote to many companies asking for Northern Light Ensemble help, receiving support from Rosa’s local dance academy and music related organisations such as the Musician’s Hearing Services. Companies that didn’t even know us supported the event by advertising in the concert Monday 6th July 2015 programme, proving that it 7.30pm The Riverside pays to approach as many Hall Civic h Whitwort local businesses as you can.

NDCS Families • Winter 2015

Those that couldn’t support financially offered us prizes for the raffle. “We chose Vivaldi’s The Four Seasons as the main feature and designed bright, eye-catching flyers and posters of a tree in all of the different seasons. We distributed these widely to help sell almost 300 tickets. We also included the link to our JustGiving page, as well as emailing it to everyone we know and getting it mentioned in our local newspaper. A lot of people who knew they couldn’t attend made a donation on this page. “The concert was a roaring success. It was amazing to see people queuing out of the door and into the car park for something we’d organised ourselves. We raised £6,000 and there’s already demand for a second concert. Elizabeth Bosw orth grew up studied the violin in Devon and gaining a place with Howard Davis before at study with Jean the Royal Academy of Music Harvey and Erich to the Academy she was a founde Gruenberg. At Trelawn String r Quartet, winnin member of the awards with them, g seve and performing ral prizes and throughout the in recitals UK, including at the Wigmo re Hall.

Graduating from the Academy been a full-tim in 2000, she has e member of the Halle Orche since 2001. In stra recent years she has given recitals in Londo solo n, Devon and well as formin the North West, g and leading as the Arlington Quartet.

String

Elizabeth freelan ces with variou orchestras in s professional Manchester, Birmin London, and also enjoys teachi gham and coaching the Halle Youth Orcheng the violin, schoolchildren stra and leadin of g Halle educa To relax, Elizab all ages.

tional music works eth is a keen hops to runner and compl eted the Londo n Marathon earlier this year.

Adi Brett was born in Bright on and started playing the violin aged four. At age 14, she was awarded a Gover nment schola rship to the Purcell Schoo l of Music where she subsequentl won their conce y rto competition, performance culminating in of Bruch’s Violi a n Concerto no.1 St. John’s Smith at Square, Londo n. Continuing studies with Yossi her Zivoni, Adi gained scholarship to a the RNCM where numerous prizes she for chamber music won performances and for solo as well as leadin g all of the College orches tras.


In 1997, Adi was generously funded Countess of Munst by The er Trust, The Trust and The Ian Fleming Martin Trust to study with celebrated pedag Meanwhile, Adi ogue Lorand was also invited Fenyves Royal Conservatory master classe to both Aspen of Music in Toront at the s of Dorothy and Banff summ o, Canada. DeLay, Donald er music festiva 
 Weilerstein, Glenn ls, performing Dictero in the On her return w and Peter Zazofs from Canada, ky.
 Adi became Princip promoted to no.3 in 2002. al no.4 1st violin After eight years freelance career in the Hallé Orche with the Hallé , and since then stra, and she made the Scottish Orche has been guest decision to stras and Manch leader for the RLPO, BBC Philha pursue a ester Camerata. and was also appointed Assoc In 2011 she was rmonic and iate Leader with June 2014.
 appointed co-lea Manchester Camer der Adi is a founde ata in 2011, becom of the RLPO r member of ing Leader in the Manchester on extended Piano Trio. She loan to plays a 1752 President of Bank Manchester Camerata by Guadagnini violin k arts philanthropis of America Merrill indly t Jonathan Mould Lynch’s Europe s CBE, former an business.

Thank you Alex and Morris! As well as raising vital funds for us they’ve inspired others to fundraise too. The teachers at a local English language school are going to hold a dress-down Friday collection and many of the concert attendees have said they’ll consider fundraising for NDCS in the future. If you’d also like to organise an event to raise money for us, no matter how small or large, we’d love to hear from you on ndcschallenges@ndcs.org.uk.

0808 800 8880 • www.ndcs.org.uk


How can you get involved in 2016?

FUNDRAISING

is 95% of our wico–rk without

17 April, Brighton Marathon

This 26.2 mile course winds through the city centre before finishing on the seafront.

24 April, London Marathon

We’ve got a few places remaining for this iconic London event.

2–8 May, Deaf Awareness Week

Organise a concert like Alex and Morris, sell unwanted items on eBay, host a dinner party and charge guests or just donate the contents of your money box to us.

funded by the publ le to you, we wouldn’t be ab at help provide vital services th af to change the lives of de lies children and their fami those f of across the UK. Dust and see new year’s resolutions ways below for a selection of support you can raise money to us in 2016.

Or support us at any time that suits you: Run, cycle or trek

Choose a run, cycle or trek in your area, sign up and use your place to fundraise.

4–5 June, Brecon Beacons Trekfest

Skydive

20–24 July, Tour de France London to Paris special

Big Cake Bake

31 July, RideLondon-Surrey 100

Ready Steady Swim

Trek 25, 50, 75 or 100km through the stunning scenery in South Wales.

Cycle 420km in just four days, culminating in watching the grand finale of the Tour de France. Cycle 100 miles on closed roads through the capital, and into Surrey’s beautiful countryside.

30 September– 9 October, Cycle South Africa

Explore the natural beauty of the Garden Route, South Africa, covering 450km over six days in the saddle.

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

Jump from 10,000 feet – freefalling 5,000 feet at 120mph! No need to get fit, just fundraise. Get together with friends, family, work colleagues or your local community to raise some dough. Pick a distance, set a time limit and start fundraising.

Simply donate

Make a one-off donation by credit or debit card, or help us all year round with a regular Direct Debit.

Louisa Please contact Katie or ur plans to today to talk through yo u! support NDCS. Thank yo

rg.uk www.ndcschallenges.o .org.uk ndcschallenges@ndcs 020 7014 1199 NDCS Families • Winter 2015

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Cued Speech makes spoken language visible

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

Sign up

to a running event near to you and use your place fundraise for NDCS. ising pack We’ll send you a fundra running vest! and FREE purple NDCS

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

“I’ve chosen NDCS because my girlfriend’s niece was born profoundly deaf. NDCS have been incredibly supportive throughout the process so we are all running a half marathon to raise as much money as we can.”

Contact us for Stars.indd 1 free information and details about low-cost training.

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

ndcschallenges@ndcs.org.uk 020 7014 1199 www.ndcschallenges.org.uk

Learn, grow and flourish

Stars.indd 1

02/06/2015 11:45

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


SHARE & SUPPORT

Share & support

Recent discussions: Narrow ear canals Behaviour Later identification of deafness

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

Topic: adopting a deaf child

Topic: sign language

We’re adopting a two-year-old with moderate sensorineural hearing loss and wanted some honest feedback about what we can expect for the future. He was diagnosed early but only recently started wearing hearing aids. <<<Juliemoggs>>>

My 21-month-old son wears hearing aids and his speech is developing well. We’ve been using Sign Supported English and I’m learning BSL Level 1. Our new Teacher of the Deaf doesn’t believe in teaching sign language and thinks it holds back children’s development. <<<anon>>>

We have two boys with a similar hearing loss, but they have worn hearing aids since they were babies. They are both in mainstream schools, and their biggest challenge is hearing the teacher – the noisier the environment, the harder it is to hear speech. Our Teacher of the Deaf has arranged for both boys to get radio aids. <<<dandm2001>>> I have fostered children who’ve received hearing aids later, and it can affect their development. However, with moderate deafness, I would expect the child to manage orally at school. I personally think that using sign language can help – I’m a big fan of giving a child as much as possible, so they can find their most comfortable way to communicate. <<<tjjobson>>> We bring our son home in a few weeks – the progress he’s made in a supportive foster home is amazing, but it’s still going to be a huge learning curve. <<<Juliemoggs>>>

Using Sign Supported English with our son made him more confident, particularly when swimming and at night-time when he takes out his hearing aids. He couldn’t wear his hearing aids for six weeks after a recent ear infection and would have been lost without sign. <<<anon>>> We wanted to give our son a chance to learn speech, but I started BSL classes because he still can’t use understandable speech and is really frustrated. I have personally found that it helps with speech. I think it is up to you as you know your child best. <<<anon>>> We signed with our son from birth. Our Teacher of the Deaf said to stop signing after he was given a cochlear implant – we didn’t! It took him a while to learn to talk and sign language helped him to communicate. <<<JayneLF>>>

To find out more about communication approaches you can take with your child see www.ndcs.org.uk/communication. For information on how radio aids and other technology could help your child at school, go to www.ndcs.org.uk/schooltechnology.

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

NDCS Families • Winter 2015

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Does your child struggle on the phone? Hear better at home or on your mobile phone Our latest products can help your child chat to friends and family on the phone - by streaming the caller’s voice directly to their hearing aids. The Phonak Phone is a home cordless phone that can be used to hear the call through your child’s hearing aid(s) without any setup needed. And for the rest of your family it’s used as a normal cordless phone! The EasyCall attaches to your mobile phone and connects with it using Bluetooth, it then streams the conversation directly to your child’s hearing aid(s). To purchase these products please contact Connevans or Action on Hearing Loss. Or trial these products through the NDCS Technology Test Drive service, to find out more go to www.ndcs.org.uk/technology Please note: these solutions are only compatible with Phonak hearing instruments


TIGER MOTHER

Sounding off! Hayley’s growing up and developing a thicker skin. Increased confidence from being at college and plenty of stick from her brothers over the years have matured her nicely, making sense of humour failure much more a thing of the past. Friday night, in the kitchen… “Are you completely mad?” A question for Hayley from younger brother Harry, who’s exchanging ‘d’oh!’ looks with older brother Lee, before both of them double over laughing. Hayley is of course the butt of their humour. That’s brothers for you, whether their sister is deaf or not. “You really think there’s a horse in the fridge?” splutters Lee. Hayley shoots them each a glare, but it’s only friendly fire. She’s too busy getting ready for a Christmas party with her college mates to care about their mickey-taking. “Well that’s what it sounded like,” she says, with dignity and a withering look, taking advantage of their incapacity by whipping a big slice of pizza out of their boys’ night in takeaway box. Someone had just said something about the sauce being in the fridge and Hayley thought they said horse. Hayley shrugs it off. She’s come a long way. In some ways I think her deafness and the challenges that arise from it have been character forming, toughened her up some, and that’s no bad thing. Her brothers of course should know better. Deafness doesn’t make you stupid or crazy, it just means you can’t hear accurately and it’s not funny. But the problem is, sometimes the resulting absurdity is funny, even though I’m certain that’s not politically correct. Luckily Hayley sees it that way too. Being able to laugh at yourself has to be one of the best defences, as well as an appealing trait. And it’s all good practice for the idiots you meet in this life.

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

I recently had a jarringly unfunny incident while at the opticians. In conversation it came up that I write this blog for NDCS. The professional’s witty riposte? “Pardon?!” followed by riotous laughter at his own joke. I just stared at him. Unbelievable. It was meant to be harmless ‘fun’ but laughing just because someone’s deaf is clearly not funny. But worse than this was an advert in one of the free mags that plops on the doormat every month, and it keeps coming back to me, because it was so insulting. It was a page selling ‘invisible’ hearing aids, and the premise was that hearing aids are an unsightly embarrassment. The text included a reference to no one having to have ‘banana-like’ things in their ears. It was truly outrageous, at the level of childhood name-calling, insensitive, damaging and wrong in every way. The magazine disappeared into the recycling bin and I didn’t get the chance to complain, which is probably why it keeps bugging me. But I think there’s a vast difference between such insensitive insults and life throwing some ridiculously absurd moments at you. Hayley agrees. And she gives as good as she gets. “Enjoy your saddo night in, losers!” she smiles, and sashays out the door.

> Read Tiger Mother’s blog at: www.ndcs.org.uk/soundingoff

For tips on how to help people understand deafness and become more deaf aware see www.ndcs.org.uk/deafaware.

NDCS Families • Winter 2015

15


Learning for Life and Work

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

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

Our farm

Our school

Our college

FOR YOUNG PEOPLE WITH COMMUNICATION AND LEARNING DIFFICULTIES

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

The Royal School for Deaf Children Margate & Westgate College Victoria Rd, Margate, Kent CT9 1NB. Telephone/Textphone: 01843 227561 SMS: 07797 800015 Fax: 01843 227637 School email: enquiries@royalschoolfordeaf.kent.sch.uk Website: www.townsendtrust.org

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

02/04/2012 10:30

Da y pla resid and ce en s a tia va l ila ble

A leading national specialist college for those with communication needs; • Deafness/Hearing Impairment • Autistic Spectrum Conditions • Learning Disabilities and Difficulties

OU OFSTE T for STANDD soc ial c ING are

2014 OFSTED ED D GRA GOOD Our individualised learning programmes offer a unique approach to students who have specific language and communication needs. Our holistic approach seeks to recognise their needs, wants and aspirations by creating opportunities to develop their talents to the full in a highly supportive, ‘Total Communication’ environment.

For further information, please contact the Pathway Managers on

www.cscprospectus.co.uk

01302 386720

or email: pathwaymanagers@cscd.ac.uk

Doncaster Deaf Trust

A National Centre of Excellence

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


SO PROUD!

Every day deaf children and young people prove that deafness needn’t be a barrier to enjoying life. Read on for some of the amazing things your children have done to make you proud. James was born with severe hearing loss in his right ear and also has a mild loss in his left due to glue ear. His speech and communication skills are behind, but he’s come a long way since starting his playgroup and having various therapies. He always has the biggest smile. Stephanie, mum to James (2) who is moderately to severely deaf. Billy is a charming, charismatic young man. His passion is performing and he’s appeared in many productions. We’re very proud of Billy and he really is a superstar. He shows hearing loss doesn't hold you back as long as you're passionate about what you want to do. Elizabeth, mum to Billy (14) who is mild to moderately deaf.

We’re so proud of Evie, who struggled with her development until she was diagnosed deaf aged four and fitted with hearing aids. Since then she’s worked tirelessly to narrow the gap, learning to swim and ride her bike. She also enjoys Brownies and gymnastics club. Evie amazes us with her determination to achieve. Martyn and Rachel, parents to Evie (8) who is severely deaf. www.ndcs.org.uk/livechat • 0808 800 8880

Poppy lost her hearing in May 2014, struggled with hearing aids and was very sad. In September 2014 she had a five organ transplant and is now reintegrating back into school as a deaf child. She's coped amazingly, far better than we dreamt. We’re very proud of our little superstar! Kim, mum to Poppy (8), who is profoundly deaf.

We’re so proud of Emma. She only has one working ear, but that hasn’t stopped her from achieving amazing things. She uses both English and Spanish to communicate and she loves talking to everybody, and is the best big sister in the world! Andreina and Michael, parents to Emma (4) who is severely deaf in one ear. Harley wasn't progressing with his hearing aids and then was diagnosed with a speech and language disorder. He’s always been shy and wasn’t willing to copy sounds until he started school. Now every day his confidence grows and his speech is progressing. I’m so proud of my little man. Lisa, mum to Harley (6) who is moderately deaf.

Every day Mollie amazes us. She tries her hardest at school, does gymnastics and swimming lessons and has excelled herself. She was petrified of water but can now swim in the deep end with no armbands. We couldn’t be prouder of Mollie, she’s definitely our little superstar. Louise and David, parents to Mollie (6) who is mild to moderately deaf.

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

17


T

Helping Harry hear Lucie and Scott were shocked, scared and sad to discover their newborn son Harry was profoundly deaf, but they soon embraced their rollercoaster journey of sign language, assessments and cochlear implants to help Harry hear. 18

wo-year-old Harry’s parents describe him as a typical boy. “He likes cars, trains and rough and tumble,” smiles mum Lucie. “But he also loves his IKEA kitchen,” adds dad Scott. Having no experience of deafness, Harry’s diagnosis was a complete shock to them both. “We didn’t suspect anything,” says Lucie. “Harry was a newborn baby and did everything a newborn baby does.” When he failed his newborn hearing screening they weren’t concerned. “A couple of my nephews failed their first test so we didn’t think it was uncommon,” says Scott. But after failing further tests, Harry was referred to the hospital at seven weeks old. He was then tested intensively for 90 minutes and the couple knew something was wrong, but they weren’t quite prepared to be told Harry had a severe hearing loss. Minutes later he was having moulds taken for his first set of hearing aids and it felt like everything had changed. “It was a massive shock,” remembers Scott. “We just wanted to get out of there.” “We got home, told our close friends and family and then cried ourselves to sleep,” says Lucie. “I felt scared for Harry; I didn’t want to put him down.” They also felt very sad that Harry had never heard their voices. “But when we got our heads round it we realised he didn’t know any better – he hadn’t lost anything. But we might be able to give him something – that became our goal,” says Scott. The couple felt lucky to have a strong network of supportive family and friends. Lucie blogs about being a mum and found writing her post ‘The day we would rather forget’ was the best way to tell everyone else. “Writing that was one of the biggest reliefs. We had so many nice messages of encouragement and support,” she says. A week later Harry had hearing aids, but they didn’t seem to make any difference. “He had his first proper hearing test at six months with his aids in and gave absolutely no response,” says Lucie. “The head of paediatrics diagnosed him as profoundly deaf and asked if we wanted to be referred for cochlear implants. It wasn’t even a decision – we felt like it was the only path to go down.” They also began learning basic British Sign Language (BSL) with Harry when he was four months old. Over the next six months Harry had 12 appointments to be assessed for cochlear implants, including a hearing test every month, ending in an MRI 0808 800 8880 • www.ndcs.org.uk


scan. “It felt like a long, agonising wait,” says Lucie. “Fortunately the scan showed Harry was a perfect candidate and his operation was booked for six weeks later.” Lucie and Scott had mixed feelings before the operation. “I was petrified. And there was guilt at putting our baby through major surgery of up to eight hours. But we also felt excited as it was what we’d been waiting for,” remembers Lucie. “We’d googled every question and knew exactly what would happen. We didn’t want to be shocked by anything.” The day of the surgery was challenging. “Harry wasn’t allowed to eat or drink anything and he didn’t go down until 2.30pm,” says Lucie. The procedure itself took six and a half hours and Lucie then stayed overnight with Harry. “He was out of it, disorientated, his whole body swollen with fluid from the drip and he was upset, which was the hardest thing. That first night was horrendous, but by morning he was eating and smiling, so it was worth it,” she says. “Harry came home the following evening and the bandages came off that day.” It was another six weeks before the implants were switched on. “We were expecting a massive reaction, even though we were told there might be no reaction. Harry’s eyes went wide but he didn’t cry or anything. But audiology don’t give them the full volume and range to start with as they don’t want to scare them,” says Lucie. “There’ve been gradual changes to his behaviour since – it’s been a longer process than we thought. He has to go back for appointments every few weeks for tuning and mapping. But in the first week he started turning for his name, which was an emotional thing for us, and then started repeating ‘mama’.” “The implant processor has three settings which we gradually turn up before Harry’s next appointment when they’re changed for three new ones. The sound is slowly getting louder and changing tone and pitch,” explains Scott. “Harry dances to music on the TV now and he shouts and claps.” “Now Harry has some hearing he can link words and sounds with signs which helps to bring his speech along,” says Lucie. The family plans to continue to use BSL alongside speech. “We also don’t want to limit his communication with other deaf children,” Scott adds. “We don’t know what lies ahead.” Lucie encourages other parents with a newly identified deaf child not to forget to enjoy them. “Remember they’re still a baby,” she says. “I wish we’d spent a bit less time worrying about Harry and more time enjoying him.” She and Scott want Harry to have a fulfilled life with no boundaries. “It doesn’t matter if they’re hearing or deaf, you have the same ambitions for your child,” says Scott. “I want Harry to earn lots of money so he can keep us in our retirement!”

If your baby has just been diagnosed as deaf have a look at www.ndcs.org.uk/baby. For more information about cochlear implants visit www.ndcs.org.uk/ cochlearimplants. You can watch videos of children with cochlear implants at www.youtube.com/ndcswebteam or follow Lucie’s blog at lucieandthebump.blogspot.co.uk (please note we promote blogs we think might be of interest to our members but the opinions expressed in them are not necessarily our own).

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

EARLY YEARS

04 to

NEW Wint chec er klist

years old

Your winter checklist for the pre-school years Toys with hearing devices

Would your child like a soft toy with a hearing device like theirs for Christmas? Connevans sell a cheeky monkey toy with cochlear implants (www. connevans.co.uk – search for ‘Buddy Monkey’) and Etsy sell Weesie Pals with special accessories such as hearing devices (www.etsy.com/uk/shop/ WeesiePalsShop). Please note Weesie Pals are US products and may take a lot longer to ship.

Eva and the Christmas Pictures

This Christmas story by Thelma Knowlson is about a profoundly deaf girl called Eva. Eva isn’t excited about Christmas because she doesn’t understand, so her two hearing sisters draw pictures to explain. To order copies for £8.59 each, go to ‘Contact me’ at thelmak31.wix.com/thelmaknowlson.

Make Time 2 Play app

The Make Time 2 Play app gives hundreds of ideas of activities for imaginative and exploratory play for young children and it’s free to download. Visit www.maketime2play.co.uk for more information.

www.ndcs.org.uk/0-4

NDCS Families • Winter 2015

19


“Cholesteatoma wasn’t classed as a hearing loss” When Maggie and Peter’s daughter Megan was diagnosed with cholesteatoma it was a completely new concept for the family. They soon found out how little others knew about it too…

N

ine-year-old Megan loves shopping, swimming, talking to her friends and outdoor activities with her parents and older brother Christopher. She’s just a normal primary school pupil, except that for years she’s struggled with a disease in the ear called cholesteatoma which can cause hearing loss. When the specialist consultant told Maggie that Megan had cholesteatoma in both ears, she didn’t know what to think. “I really didn’t know anything about it,” says Maggie. “So I read everything on the internet I could. Apart from our consultant there was nobody to explain anything to us.” Megan’s hearing loss was first picked up in reception when she failed two hearing tests. “I think they thought it was glue ear,” remembers Maggie. “She had a set of grommets when she was five but the registrar wasn’t able to insert one of them so she was transferred on to a consultant.” They put in another set of grommets later 20

NDCS Families • Winter 2015

What is cholesteatoma? Cholesteatoma is a cyst or pouch of skin within the ear which usually occurs due to a repeated ear infection, and causes skin to grow inwards from the eardrum. The first sign may be a persistent smelly discharge from the ear. If left untreated, it can get bigger and destroy the delicate bones within the middle ear and cause permanent deafness. It’s necessary to remove the cholesteatoma before it can cause damage. If children have chronic discharge from the ear over a long period it’s very important they see an ear, nose and throat (ENT) specialist for assessment and advice. that year but further investigations showed she was developing cholesteatomas in both ears and would need operations to remove them. Because of the problems it causes

in the middle ear, Megan, like many children with cholesteatoma, was given a bone-anchored hearing aid (BAHA) on a soft headband as it allows sound to bypass the middle ear and go straight to the cochlea. “She wore it for school but it was uncomfortable and pressed tightly on her head,” says Maggie. After the diagnosis, Megan had hospital appointments every three weeks and had the first operation in her right ear a few months after the initial diagnosis. “There was no room to breathe,” adds Maggie. “The operation was to remove the dead skin cells that form together, because they erode the bone. They basically drill it out. The cholesteatoma had grown into the three little bones (ossicles) and eroded them so the surgeon had to rebuild them.” In November 2013 Megan had an operation in her left ear, a mastoidectomy. “The cholesteatoma had grown into the mastoid bone behind the back of the ear,” explains 0808 800 8880 • www.ndcs.org.uk


Maggie. “The surgery was quite invasive; she was in there for four hours and was quite poorly for the week after.” Maggie thinks people don’t always understand the psychological effects of such an operation. “It’s very hard on the child knowing that they’re going to go through a major operation. Two of the possible side effects are partial facial paralysis and coming out profoundly deaf. And also they don’t know how big the cholesteatoma actually is inside the ear or how far it’s grown. There are other effects too – Megan had to stop swimming for seven months because the moisture could lead to more ear infections.” The family still doesn’t know if the cholesteatoma has completely gone. “She gets repeated ear infections that cause horrendously smelly discharge and her hearing’s dropped twice as well,” says Maggie. “We’ve just got to keep our fingers crossed.” Cholesteatoma can cause permanent deafness and Megan now has a mild to moderate hearing loss and wears hearing aids. Luckily, she gets on much better with them than she did with the BAHA. “They’re bright red,” says Maggie. “I think she treats them more as an accessory. And she knows how to change the batteries, clean them out – they’re hers and she looks after them.” Maggie thinks there needs to be more awareness of cholesteatoma. Megan attends a mainstream school with a hearing impaired unit but she wasn’t classed as having a hearing loss so wasn’t included in the unit. “It’s classed as a disease because some children come out of the operation fine,” explains Maggie. “You’ve got to keep talking to the schools and explain to everybody. Hopefully the more teachers that know about it the more help that child can get. I think I’ve come to the point now where everybody knows.” Megan has found school academically challenging. Not only has she had no support from the hearing impaired unit she also struggles with working memory loss, word processing disorder and dyslexia. “The working memory loss means she can’t keep things in her mind and the processing problem means that sometimes you have to change the way you say something for her to understand,” explains Maggie. “If you put them all together it can cause one big problem, especially with reading and maths, but we haven’t found much support out there from external services.” The fact that Megan’s cholesteatoma might come back is a big worry for the family. “You’ve just got to stay strong. It’s really hard,” sighs Maggie. With the future uncertain, Maggie’s main hope for Megan is that she’s happy. And Maggie will continue to raise awareness of cholesteatoma and encourage others whose children are going through it to do the same.

“You’ve got to keep talking to the schools and explain to everybody.”

PRIMARY PRIMARY YEARS YEARS NEW Wint chec er klist

5 10 to

years old

Your winter checklist for the primary school years Signed Christmas songs and stories

For signed Christmas stories and songs check out ITV’s Signed Stories app for iPhone and iPad. It’s free to download from ow.ly/ewj98 but you’ll need to buy individual songs and stories. Or try YouTube for more signed Christmas songs. www.youtube.com

Communicating in the car

If you’re going on a long car journey over the holidays, we have information on products and apps that could be helpful. www.ndcs.org.uk/ communicatingincar

Is your child starting secondary school soon?

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

www.ndcs.org.uk/5-10

For more information see www.ndcs.org.uk/ cholesteatoma or contact our Freephone Helpline at www.ndcs.org.uk/helpline.

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

NDCS Families • Winter 2015

21


Never give up Helen fought for years to get a school that could support the needs of her son Nathan, 13, who is profoundly deaf. With the National Deaf Children’s Society right behind her, now he’s making real progress.

H

elen swivelled round from her computer, smiling as she listened to her son Nathan, six, speaking and signing animatedly about his day at school with friends. It was lovely seeing him so happy, and so different from a year earlier. Back then he’d been miserable at school, falling ever further behind and spending playtimes sad and alone. “As a mum you just want your child to be happy and have a normal life,” says Helen. “At last he was.” Nathan and his twin Fraser were born prematurely and with cytomegalovirus (CMV), a virus that can destroy hearing. Fraser was given a drug to cure the virus, which saved the hearing in one ear. But Nathan didn’t take the drug because his liver couldn’t tolerate it – and just six weeks later he was profoundly deaf. With their older daughter Charlotte born hearing, Helen and husband Iain had no experience of deafness. “I didn’t understand where to go, what to do,” says Helen. “Very little information was given to me. It was just ‘here are some hearing aids, go home and put them on his head.’” Because Iain was abroad working, Helen often had to cope alone with newborn twins and toddler Charlotte. She learnt to sign with Surrey Deaf Children’s Society (SDCS) and aged two, Nathan had a cochlear implant, though it didn’t help. Fraser’s mainstream nursery welcomed Nathan too and

22

NDCS Families • Winter 2015

did their best to support him, but finding a primary school proved a real battle. “Nobody, not even the Teacher of the Deaf (ToD), is allowed to recommend a school,” says Helen. “So you have to do lots of research and become a specialist in what your child needs.” Nathan started at a local mainstream school which had a deaf unit with eight children. “He was the only deaf child in his class, he was really unhappy. He had 20 minutes each with the ToD and speech and language therapist weekly – but Nathan needed to be with them 90% of the time. In class he couldn’t keep up, it wasn’t set up for him,” says Helen. She applied for Nathan to go to a specialist school for deaf children 60 miles away, but the local authority refused. They also decided not to give him a statement of special educational needs. “Luckily the deaf school advised us to contact NDCS for advice and with their support we launched into the baffling world of the education Tribunal system to appeal the decision,” says Helen. Six months on Nathan got a statement and Helen also appealed about the school placement and amount of support offered. The local authority submitted only one sentence: “We do not have any schools that can meet his needs, and will not allow the requested school as it is too far away.” With NDCS help, Helen got independent reports for Nathan (speech and language therapy, occupational therapy 0808 800 8880 • www.ndcs.org.uk


and educational psychology). She also moved her family to a rented house nearer to their chosen school. Just a week before the Tribunal hearing, the local authority conceded – Nathan could go to the specialist school. Helen then watched his transformation from a lonely, withdrawn little boy into a happy, confident six-year-old. “Nathan was in a smaller class surrounded by other deaf children. He found it easier to make friends, discovered an amazing talent for drawing and continued to make progress.” But just a few years later they went through the same turmoil for transition to secondary school. “At the end of Year 5 I got a letter saying ‘we’ve found him a school for next year’ – without even asking me,” says Helen. “They used the same statement from age four, it hadn’t been updated for six years. I had another fight on my hands so I contacted NDCS and went to Tribunal. One week before the hearing, the local authority applied for him to attend yet another different school. The case then wouldn’t be resolved in time, so they wanted an adjournment, meaning Nathan would be out of school for a year. I was so shocked they’d do that.” A two-year battle ensued, with Nathan spending an extra year at primary school. With NDCS support, Helen told the director of children’s services she’d report them to the Local Government Ombudsmen. “It took a lot of threatening and letters but finally we got the statement naming the school we wanted,” says Helen. “At last Nathan could keep up his progress and be happy. “It’s been hard. There’s been huge disruption to our family. It’s hard on the other two children because they’ve had to make many sacrifices – sitting at hospital for Nathan’s appointments, not getting the attention I want to give them while I’m doing battle. The financial burden adds stress, paying for independent assessments and uprooting our family to be able to get Nathan into the right school. Every time you open your email you dread seeing a local authority one. You try to put on a happy face for the children and it’s a relief when they’re in bed and you can yet again go through your paperwork. It puts a strain on your marriage too as it seems that’s all you talk about and you don’t always agree.” Nathan is five years behind Fraser, partly due to his implants. Age eight, it was found his first one had never worked properly, then a re-implant and a second implant proved faulty so he had a third successful set nine months on. But Helen believes he’d be much further behind without the right school. “Getting the right support for Nathan has been a continuous uphill struggle but it’s worth it,” she says. “As a parent you want your child to be happy. It’s wrong you should have to fight for that, for them to have a future.”

Fraser

Charlotte

Nathan

TRANSITION YEARS

11 13 to

years old

Your winter NEW W checklist for ch inter eckl ist the primary to secondary transition years Deaf awareness

Big family gatherings over Christmas can be difficult for deaf children if not everyone is deaf aware. We have lots of resources you can use to help remind friends and family members. Have a look at www.ndcs. org.uk/communication and in particular check out our 11 tips for communicating with a deaf child at www.ndcs.org.uk/toptips.

Local groups

If your child is interested in meeting other deaf children then joining your local group might be a good option, especially at Christmas when they may have festivities your child could join in with. Find your nearest group at www.ndcs.org.uk/localgroups.

Does your child travel independently?

Our apps resource features apps that can make travel and leisure activities more accessible for deaf young people and could help your child when they are travelling independently or enjoying hobbies or other social activities. You can find the resource at www.ndcs.org.uk/apps.

www.ndcs.org.uk/11-13

We have more information about choosing a school for your child at www.ndcs.org.uk/choosingaschool or call our Freephone Helpline for advice.

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

NDCS Families • Winter 2014

23


A helping hand for deaf children Could your child’s school benefit from a peer support scheme for deaf pupils? The Helping Hands project Thank you to the National Lottery through the Big Lottery Fund who kindly granted us funding for a three-and-a-half year project called Helping Hands. The project supports schools in four regions of England (London, the Midlands, Yorkshire and the Humber, and the North East) to set up and run peer support schemes for their deaf pupils. We delivered peer support (also referred to as ‘mentor’ or ‘buddy’) training to deaf children and young people aged

What is peer support? Children and young people have a natural affinity to one another and research has shown that they’re more likely to turn to a peer for help before anyone else. Peer support builds on this and taking part in peer support training means children and young people are better able to help their peers when they ask for support. The training offers a safe environment for deaf young people to learn listening skills, with support to find their own solutions to challenges they might be experiencing. Peer support is about giving deaf children and young people somewhere to go if they need help. This is particularly important for deaf children because research has shown they can be more vulnerable to isolation. The scheme works by a teacher selecting deaf pupils to take part in the peer support training and then matching each of them, based on similar backgrounds and interests where possible, with a peer. The mentors or buddies then take part in eight training sessions, sign a buddy contract and agree an action plan with their peer so they are both happy with when they’ll meet, what they’ll talk about and when they might need further support from a teacher. In partnership with teachers and pupils we’ve created two toolkits, one for primary and one for secondary school pupils, which guide teachers through the whole process 24

NDCS Families • Winter 2015

10–18 in mainstream schools, providing opportunities for deaf pupils to meet and make friends with others like them and develop informal networks of peer support. The project aims to ensure that deaf children and young people have better chances of developing into independent, confident and resilient young adults who can make positive contributions to their communities and wider society.

of setting up the scheme with deaf children and young people. This includes delivering a training programme, looking at issues and challenges facing deaf young people today, and how they can tackle them in a positive and productive way, leading to an increase in self-esteem, confidence and resilience.

How could your child’s school benefit from a peer support scheme? A peer support scheme can have a positive impact on the school environment, helping the emotional wellbeing of everyone in your child’s school, because: • it encourages a stronger school community • it helps to reduce bullying and isolation • it promotes positive self-esteem and emotional wellbeing • it increases motivation and self-confidence • it enhances academic performance, and young people have higher expectations of what they can achieve • it improves young people’s participation in school activities • it enables a deaf young person to engage with a deaf peer • it encourages young people to be independent • it teaches young people strategies for looking after themselves and where to go for help. 0808 800 8880 • www.ndcs.org.uk


YOUNG PEOPLE

14+

NEW Wint chec er klist

years

Your winter checklist for young people aged 14+

Michael Bullen, a teacher from the Elmgreen School in London, shares how a peer support scheme has had a positive impact at his school. “We set up the peer support scheme as we hoped to strengthen relationships between the deaf students in our hearing impaired unit, with the older ‘buddies’ reassuring younger students about problems encountered in teenage life. We also thought it would increase the confidence of all students, because the older ones feel they have something to give and the younger ones are getting more support. “We found with the level of support and encouragement from NDCS, the scheme was very easy and straightforward to set up. The Helping Hands information session was helpful and we felt it increased our knowledge of peer support schemes. We then selected four students for the buddy training. “The training seems to have strengthened all the relationships between students with a hearing loss in the school. We could see the older students had more sense of purpose in relating to younger peers and they were glad to have a responsibility. The younger students who were given a buddy seemed more confident and outgoing. There are only a few deaf students in our school, and that doesn’t mean that they’re all going to be friends with each other. But this programme along with the workshops NDCS has provided have brought them all together a bit more – at least they feel comfortable in saying ‘hello’ and talking to each other now. For these reasons I’d definitely encourage other schools to set up a similar peer support scheme.”

Communication support

Does your child know about the different types of communication support available to them? The Buzz, our website for deaf young people aged 12–18, explains the different options such as communication support worker, lipspeaker and speech-to-text reporter. Have a look at www.buzz.org.uk/ communicationsupport.

Personal Independence Payment (PIP)

Has your child been invited to claim PIP? We have information to help you understand the claim process and how to complain about delays or poor decisions. Have a look at www.ndcs. org.uk/PIPclaim and there are also some tips on claiming PIP at www. ndcs.org.uk/benefitstips.

Is your child leaving school soon?

Pupils involved in our peer support scheme told us: • “I felt I was being helpful and supportive to younger deaf people. I feel I gained lots more responsibility.” • “It was good. I liked meeting and having a chat with a girl who was older than me. It was just nice telling her my problems.” • “It was really helpful.”

Setting up a peer support scheme for deaf young people

A step-by-step toolkit

If your child’s school could benefit from a peer support scheme please share this article with their teacher. If you’d like more information on the Helping Hands project, peer support schemes and the new peer support toolkits please contact our Freephone Helpline on 0808 800 8880 or helpline@ndcs.org.uk.

Created as part of the Helping

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

Hands project.

If they aren’t sure what to do next then our new Buzz webpage could be a good place to start. It lists all the choices including further education, apprenticeships, university and work, and where to find more information about them. www.buzz.org.uk/ myfuture

www.ndcs.org. uk/14plus

NDCS Families • Winter 2015

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Deaf children with dyspraxia Dyspraxia is a form of developmental coordination disorder which affects gross and/or fine motor coordination (i.e. large and/or small movements) and sometimes speech. Here, two families tell us about their experiences of having a deaf child with dyspraxia. About dyspraxia

The difficulties faced by children with dyspraxia may vary – they often have trouble riding a bike, writing or typing, processing information, remembering things and organising themselves. Some children have what is known as developmental verbal dyspraxia, or childhood apraxia of speech, where they find it difficult to coordinate the movements required to produce speech. This can occur with more general motor coordination difficulties or as a separate condition. It’s thought that 1.7% of school-aged deaf children have dyspraxia. Sometimes there are problems diagnosing dyspraxia as difficulties may be attributed to the child’s deafness. There are currently no diagnostic tests specifically for dyspraxia in deaf children.

Nicola and Tony are parents to Charlie (7) and Izaak (1). Charlie has auditory neuropathy spectrum disorder and is profoundly deaf with one cochlear implant and one hearing aid. He also has dyspraxia. Nicola says: Charlie was born premature at 26 weeks and had to stay in hospital for six months. We tried hearing aids at age two but they made no difference so we were referred to the cochlear implant team. He was implanted in his worst ear at three, and six months later he said ‘mummy’. “Charlie was always late at doing anything – crawling, sitting, walking, which was put down to him being

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NDCS Families • Winter 2015

premature. He was four when I first heard the word dyspraxia and I was confident that’s what he had. We mentioned this to his paediatric consultant but she said a diagnosis of dyspraxia couldn’t be made before he was seven. “When he was six and a half I pushed for a diagnosis so we got the assessment done early. It was a 30 minute appointment – he was timed on how many coins he could put in a piggy bank, threading beads, throwing and catching a bean bag, jumping and hopping. The tests were done by an occupational therapist who wrote to us with her opinion that Charlie has dyspraxia. It was a relief – I don’t like

labels but it was my ammunition so he wouldn’t be penalised at school for not writing in a straight line, or at swimming because he couldn’t do breaststroke. “I understand dyspraxia as a problem when two parts of the body have to do one job in different ways, like when fastening a button – the two hands have different roles to play. We’re a long way off shoelaces because that’s one job, two hands. We recently went down a muddy path and we had to hold Charlie’s hand and tell him where to put his feet. That and the fact he’s deaf means I have to shout to get his attention to stop. “I suspect Charlie might also have verbal dyspraxia because he finds it hard to make certain sounds and has difficulty eating food. Speech and language therapy is incredibly important and it’s a service being cut right back, which is disappointing. “At school Charlie has an occupational therapist who has assessed his posture and got him a special seat and given him exercises for his tummy muscles and an angle board which raises his work up slightly. “I’d advise others who suspect their deaf child has dyspraxia to ask their audiologist for a balance assessment because there’s a simple test to see if balance problems are to do with the ears. Then, arrange an appointment with the paediatrician. A label doesn’t change anything but it makes you aware of other services.

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 Linda and Bill are parents to Zac (13) and Joe (11), who is profoundly deaf with one cochlear implant and one hearing aid. He also has verbal dyspraxia and a language delay. Linda says: Joe was identified as deaf at the newborn hearing screening. A hearing test at the Elizabeth Foundation found him to be severely deaf but a retest showed profound deafness. “Joe didn’t talk straight away and the language gap was growing between him and other implanted children, but before we knew about verbal dyspraxia we didn’t know why this was. Joe doesn’t pick language up incidentally so needs speech and language therapy, which is in his statement, but his speech and language therapist (SLT) isn’t trained specifically for deaf children. “He’s a confident child who knows he’s deaf. People don’t always understand him, but this doesn’t hold him back. He participates fully in school life including being a school councillor, representing the hearing impaired unit, and a house captain in Year 6. “Suddenly, professionals said they suspected verbal dyspraxia, but it wasn’t formally diagnosed until Joe was 10 when he was referred by his SLT. The diagnosis felt like an additional challenge – Joe’s always had good support for his deafness but we didn’t know how to support him with dyspraxia. Luckily he has an amazing learning support assistant and Teacher of the Deaf who have encouraged him and given us ideas to help with his vocabulary which remains limited. He drops a lot of words meaning people have to listen hard to understand him. “Not being understood is frustrating for Joe; he’ll try two or three times before saying ‘never mind, you don’t know what I mean’. However, he’ll then likely find another way to get his message across, e.g. by using a picture or attempting to do whatever it is he wants himself. The language barrier also affects Joe academically; he’s intelligent but has issues with understanding. “If you suspect your child may have verbal dyspraxia, get a diagnosis as soon as possible. As parents, it was frustrating knowing Joe could hear all speech sounds but his language wasn’t as developed as other children with cochlear implants. We now understand why – Joe has an additional condition over and above being deaf.

Visit the Dyspraxia Foundation website at www.dyspraxiafoundation.org.uk for more information.

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

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.ndcs.org.uk/ parentplace and our Facebook page: www.facebook.com/NDCS.UK.

YouTube videos

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

Specialist activity providers

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

Booklet

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

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

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How do I... …make celebrations like Christmas deaf friendly?

?

We know that times of celebration can be difficult for deaf children and young people – they may find themselves feeling left out amongst people who aren’t very deaf aware and in noisy and busy situations. Here, four families who celebrate Christmas share some of the extra steps they take to make the festivities deaf friendly. Sara and James are parents to Samuel (8), Matthew (6), Oliver (4) and Charlotte (1). Charlotte is profoundly deaf with cochlear implants. Noise levels are always high in our house with four excitable kids, and Christmas increases the excitement. Charlotte gets exhausted from listening and finds it hard to pick out voices over the background noise. “We plan to increase our use of sign during busy times like this to help her follow conversations, and we’ll remind others to get her attention visually and sign as much as possible. We’ll also encourage family and friends to minimise background noise by turning off the TV, music and computer games. We’ll also break our family and friends into smaller groups when they are over to visit, instead of having huge social gatherings where taking turns speaking can be a problem. “Small alterations can make a huge difference to a deaf child’s understanding, involvement, energy levels and Charlotte participation.

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NDCS Families • Winter 2015

Rachel and Nigel are parents to Eleanor (8) and Henry (6). Eleanor is profoundly deaf and has one cochlear implant. Deaf awareness is an issue at Christmas in the same way any large family gathering is. Everyone is excited and people talk over each other. During the meal, people are so busy talking and eating that they forget to sign. Nigel and I take it in turns to interpret for Eleanor and remind family to talk clearly and one at a time. “Christmas music hasn’t always been something Eleanor can access so we really go to town with the visual spectacle of Christmas – lots of candles around the fireplace! We always go to a signed performance of the local pantomime, attend our local deaf children’s society’s Christmas party and have subtitles on the TV.

We watch programmes that appeal to Eleanor where the humour is visual rather than language-based. We’ve also found the jokes in Christmas crackers don’t translate well with sign language, so sometimes we make our own crackers and substitute the joke for a charade or dare. “Often it’s the little things that make a big difference – if family and friends can learn how to sign ‘Happy Christmas Eleanor’ it means the world to her.

Eleanor

0808 800 8880 • www.ndcs.org.uk


HOW DO I...?

Amanda and James are parents to Jacob (5) and Samuel (3). Jacob is profoundly deaf and has cochlear implants. Christmas is still a fun time for our boys but we have to be a bit more organised. For example, we get the songs on CD for school nativity plays as soon as possible and listen to them over and over again as Jacob can’t get the words as quickly as other children. “You can’t tell children to be calm when they know Father Christmas has been; however, we try and help Jacob enjoy Christmas day by not having loud music in the background, ensuring there’s time for him to stop and rest, asking him what the best volume setting is and putting him at the end of the table, which helps with lipreading and means he doesn’t have people talking on both sides. “We gently remind family and friends of deaf awareness basics – look at Jacob when you’re speaking to him, don’t cover your face with your hands, don’t mumble and turn down the music or TV. “Remember first you have children, not deaf children. Don’t let deafness stop you witnessing the pure joy of children at Christmas time. If you see your child getting tired, encourage them to sit with you for a few minutes, then let them carry on having fun.

Helen and Paul are parents to LauraJane (16) and Jessica-Louise (13), who are both hearing. Helen is Choir Principal of Woolston Signing Choir, and supports a deaf BSL user in school. Make sure the dinner table is laid out in a deaf-friendly way, without tall candles or flower centrepieces for example. Try and use a circular table rather than a long one and sit the deaf child where they can see as many people as possible. “If you have a deaf relative that you won’t see in person, try making a faceto-face call using FaceTime, Skype or Glide. Brush up on your signing skills first! “We find signing bingo is great fun with Christmas words where the caller signs the words rather than says them. We type the words out and make two copies, one for the caller and one divided between the players. You could add a fun element to the game by wrapping up several gifts which the players take when they get a word, and later ‘steal’ from each other. “And finally, I recommend taking your deaf child to see a signing Santa, and joining/setting up a Helen signed choir.

Jacob

For 11 tips for improving communication with a deaf child visit www.ndcs.org.uk/toptips. If you celebrate Christmas you can find some additional tips and our video Make Christmas Dinner Easier for Deaf Children where deaf teens talk about making Christmas dinner deaf friendly at www.ndcs.org.uk/xmas.

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

Join our family panel Next time in Families magazine:

“How do I… support my grandchild?”

If you have any tips, advice or suggestions to share, get in touch at magazine@ndcs.org.uk. NDCS Families • Winter 2015

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The new NDCS

With a brand new bus, our revamped Roadshow is on its way to a school or event near you.

Many of you will be familiar with our big purple Listening Bus, which for the last 19 years has taken information about deafness all over the UK. To meet increased demand for visits we’re pleased to announce that, complete with a new, bigger bus, our revamped Roadshow has launched! We held an official launch on 19 September at Southern General Hospital in Glasgow, where the new look bus proved very popular. “Visitors get a lot out of the Roadshow that they don’t get elsewhere,” says Damian Ball, NDCS Roadshow Manager. “It enables families and professionals to meet and get to know each other.” Being deaf himself helps Damian connect with visitors. “The deaf children and young people love meeting adults and other children who are deaf, especially in rural areas, where it might be the first time they’ve met others like themselves,” says Damian.

What happens on a Roadshow visit? Our friendly Roadshow team, some of whom are deaf themselves, bring the shiny new bus to your child’s school or local community place. The bus contains a vast store of information, showcasing the latest resources that can support deaf children, their families, professionals and even their hearing friends, who are all invited on board to meet each other and find out more. The Roadshow team provide a range of workshops, from ‘Emotional Health’ to ‘My Future’, which goes through options available to deaf

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is on the road! “Meeting deaf role models can really boost deaf young people’s confidence in what they can achieve. Parents have found it a great opportunity to ask us questions about our experiences. Hearing children also get the opportunity to ask questions they may have been too afraid to ask their deaf classmates. Our aim is to empower deaf children and young people, giving them the confidence to achieve what they want in life – and make the world a more inclusive and deaf-friendly place.”

young people leaving school. ‘Look, Smile, Chat’ workshops are aimed at deaf children’s hearing friends, to raise awareness and improve communication and inclusion at school. The team also demonstrate the latest technology and give deaf children and young people the opportunity to try out equipment that can hugely benefit them, such as flashing doorbells and vibrating alarm clocks. Parents can talk to their local NDCS children and families’ support officer, who can offer advice and support

on education and financial benefits, while deaf children and young people can meet each other and talk openly about their deafness in a safe and comfortable environment. The Roadshow brings deaf awareness and understanding to your child’s local community, which can make a huge difference in their everyday life. Much of the Roadshow’s work is with primary schools, but increasing numbers of visits are being requested by secondary schools, sixth form colleges and audiology clinics.

0808 800 8880 • www.ndcs.org.uk


ROADSHOW

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

“The new bus is a fantastic size, the space is brilliant to accommodate a larger group and I really liked the posters covering the front porch as it gave the space privacy. The technology on the bus was fantastic!” Gillian Baxter, Teacher of the Deaf, Claypotts Castle Primary School.

Shania (12) who is profoundly deaf and Charlie (15) who is also profoundly deaf, from Heathcote School and Science College, visited the Roadshow at Whitehall Primary School in Chingford. Shania says, “It was my first time on the Roadshow. I thought it might be a bit boring. I asked my friend because she’d been to the Listening Bus last year. She told me it was a big purple bus (but not really a bus) and you went inside and had a lesson. “The first thing I thought was that it was so colourful! It looked exciting and I really loved the colours and the pictures on the front. I was surprised at how big it was inside. There was lots of space and chairs to sit on which made it feel really grown-up. There were iPads and a big TV screen; it all looked exciting and interesting. We had a lesson called ‘My Future’ and I said when I grow up I want to be an artist or a cook. I think I’m really good at drawing and I started to learn to cook in primary school and always help at home. “I learnt all about the different types of support I can get when I leave school to do the jobs I want to do. When I came off the bus I felt excited about things and not worried about the future. I really enjoyed visiting the Roadshow; I’d definitely like to go again!”

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

Charlie had already visited the Listening Bus two years earlier and learnt about the types of technology available to help him. After his visit he borrowed an alarm clock from our Technology Test Drive. “I enjoyed my visit on the Listening Bus but I remembered it looked a bit old. I was surprised when I saw the new bus! It was really bright and I loved the windows all the way round it. I was excited to go in. There was so much more space inside, last time it was a bit cramped and we all sat on the floor, but this time we had lots of room and chairs just like a proper classroom. “It was really interesting seeing all the new technology and I enjoyed the ‘My Future’ workshop. I’m in Year 11 now and starting to think about what I’ll do when I leave school so it was good to talk about what choices I have. “The great thing about the Roadshow is they have lots of people from school go on the bus to learn about how to talk to deaf children, which is really helpful.”

T o book the Roadshow for your school, college or event please contact our Freephone Helpline on 0808 800 8880, email helpline@ndcs.org.uk or download a booking request form from our website. www.ndcs.org.uk/roadshow NDCS Families • Winter 2015

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Ask the

ASK THE EXPERT

expert

h

a n n a H

Each issue a different professional shares their expert advice and gives information to help you support your child. This time Hannah Nicoll, Youth Worker at Deaf Active Cheshire, shares her insights. How do you support deaf young people?

Deaf Active Cheshire is a youth-led charity. We have 128 members and run two regular youth club sessions in Northwich and Chester where deaf and hearing impaired young people can take part in fun activities and feel relaxed no matter what their communication needs. Based on feedback from the young people, I, along with another youth worker, design the youth club sessions and then support the activities using my experience of working with young people and communicating with deaf young people. We also make time for any young person who might want to have a one-to-one chat about a challenging week.

Who comes to the youth club?

The young people that come to the youth clubs are 10–18 years old with a range of communication styles and levels of deafness, including some with additional needs, some learning and some physical disabilities. The sessions are available to all deaf and hearing impaired young people living in Cheshire and they can bring hearing friends and siblings too. Some young people have additional support and so they bring a teaching

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

assistant or volunteer with them and sometimes a communication support worker also works alongside me.

What types of activities do you do?

We’ve had chill-out sessions, trips to Coronation Street, camping residentials, treasure hunts and bowling. A regular weekly youth session may be sports activities, arts and crafts, cooking or project work. Previously we’ve applied for grants for young people to do qualifications in archery, ice hockey, rifle shooting, dodgeball and tennis. I also lead on a Young Leaders Programme. Young people aged 14+ complete a training programme to become a peer mentor, then support younger children and help out locally.

What does a typical youth club session look like?

At 6pm I welcome the group and assign a young leader to take the register and £2 subs from each young person. We have 15 minutes to catch up, welcome any new people and recap a few ground rules to encourage everyone to have the most fun possible whilst being aware of everyone’s

communication needs. The young leaders organise an ice breaker, then the session begins. It might be, for example, t-shirt designing. I’ll then go around helping and encouraging conversation where needed. At 7pm we have a refreshment break and the session ends at 8pm.

Why would you recommend deaf young people join a deaf youth club?

I’d definitely encourage deaf and hearing impaired young people to join a youth club like ours. The young people who attend have such strong friendships and have said it’s the place they feel most relaxed and that everyone understands them, not only on a communication level but understanding similar things they’re going through. It’s a challenge to make sure all deaf young people know that Deaf Active Cheshire is for them. Many put barriers in the way to attending as they think it’ll just be British Sign Language (BSL) communicators or that those attending won’t be like them, but there are many different young people that attend and they love it.

F ind out more about Deaf Active Cheshire at www.facebook.com/ DeafActiveCheshire. To see videos of other professionals who may support your child, go to www.ndcs.org.uk/whowillhelp.

NDCS Families • Winter 2015

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One year

It’s been over a year since the new special educational needs (SEN) system was introduced in England, but have the promised changes actually been implemented? Thanks to more than 500 of you who completed our SEN survey which, added to findings from our work with organisations and families, has helped us build a picture of how well the new system works in practice.

Key findings

Our findings suggest that in many areas, local authorities aren’t following the law and the reforms haven’t been implemented as quickly as promised. In particular, there are concerns about the following.

• Local Offers. We’ve found the information they provide varies. Several local authorities are acting unlawfully in, for example, failing to provide information about specialist provision for deaf children.

• The quality of Education, Health and Care (EHC) needs assessments and plans. Your experiences of consultation were mixed, as were levels of disruption and the support provided by local authorities.

• The involvement of parents, and children and young people. Few parents and even fewer deaf young people have been directly involved in the development of their Local Offer.

Rebecca and Paul, parents of Libby, 11, have been through the EHC needs assessment process. “Libby was born hearing, then diagnosed with mild to moderate deafness aged four. She wore hearing aids and got on fine at school, but steadily lost her hearing from the beginning of this year, and was diagnosed profoundly deaf in April. “We felt Libby would need more support, especially with starting secondary school in September, so back in April we requested an EHC needs assessment. She’s also recently been fitted with cochlear implants which we’re really pleased with so far. “People had warned us we’d struggle to get an EHC plan, so we were surprised how smoothly the process went. The assessment was good; everyone was supportive – her primary school, her new school, the Teacher of the Deaf, the educational psychologist. We also had support from an NDCS children and families’ support officer and used the NDCS factsheet on EHC plans.

Libby

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NDCS Families • Winter 2015

“The planning meeting, where we discussed what should go into the draft plan, went well. When the draft arrived it contained everything we’d discussed, including a full-time teaching assistant, so we replied that we were happy with it. Unfortunately when the final version arrived, it wasn’t the same: it was vaguer and there were changes suggesting the provision would be reduced once Libby was used to the implants. We’d love to think she won’t need full-time support, but we don’t know how things will progress, even though her new school was excellent in preparing for her, so we weren’t happy with this. We were told we should have had another draft showing the local authority’s proposed changes before they issued a final plan. We were cross with ourselves for not keeping a copy of the original draft. We asked them to change it back and hoped things could be sorted out without a Tribunal appeal. Fortunately, they did change it back to the draft version in the end. “Our advice to others going through the process is to keep copies of everything and ask NDCS for support if you need it.”

0808 800 8880 • www.ndcs.org.uk


on

Your rights: what you need to know

Our findings are disappointing – local authorities are struggling to implement the changes, which means there’s a risk that education support for deaf children will suffer in the transition period. This is why it’s important to understand the changes, know your rights and challenge any decline in the quality of support for your child. Things to remember: • SEN support – all education settings should now follow the ‘assess, plan, do, review’ cycle with any child with SEN, whether they have an EHC plan or not. This means they should focus on the action needed to ensure your child achieves good outcomes. • EHC plans – if your child needs more support than is normally available, you have the right to request an EHC needs assessment. This may lead to your child being given an EHC plan. • Local Offer – all local authorities in England must publish information about support in their area. The law is specific about what information they must publish. If the information you want is missing or you’re not being offered good enough support, you have the right to give feedback and the local authority must respond. Local authorities must also involve parents and young people in the development and review of the Local Offer, so ask about opportunities to get involved.

THE SCHOOL YEAR

Supporting your child's education this winter If your child will be taking exams this year, there’s lots you can do to help them prepare and the school or college can make special arrangements for them. Find out more at www.ndcs.org.uk/exams. If your child will be moving to a new school next year and they have a statement, EHC plan or coordinated support plan, their new school should be named soon. Find out more at www.ndcs.org.uk/ choosingaschool. During the winter all children, including those with a permanent hearing loss, may be more likely to develop glue ear. Find out more at www.ndcs.org.uk/glueear.

www.ndcs.org.uk/ education

What are we doing next?

We’ve reported back to the Department for Education that they must do more to keep their promises of better support. In particular, for the changes to be effective, we believe that: • Ofsted should inspect specialist education services for deaf children. It’s unacceptable that there’s nothing in place to tell parents if these vital services are doing well or need improving • there should be a stronger focus on involving deaf young people • there should be a stronger focus on how deaf children, young people and their parents are informed about these changes and their rights. We’ll continue to monitor how the new system is being implemented and campaign for better support.

We have a range of factsheets that explain the SEN reforms, including EHC plans, and your rights. For more information, and to find out what’s happening in Wales, Northern Ireland and Scotland see www.ndcs.org.uk/sen.

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

NDCS Families • Winter 2015

35


Tune in to better TV From Peter Rabbit to Doctor Who or the latest blockbusters, children and young people love watching TV and films. But many deaf children find it difficult to hear the TV and often the whole family ends up listening to it with the volume far too loud. Here we offer some solutions. Adjust the audio settings on your TV Many TVs have a range of settings and allow you to adjust the bass and treble. This can make a big difference, especially to the clarity of speech. If this doesn’t help, take a look at the products described here.

Headphones These are a good solution for children with moderate hearing loss. Cordless models are convenient and some have a balance control, or separate volume controls for each side, so your child can adjust the sound to match their hearing in each ear.

“They were large enough to comfortably fit over her hearing aids, easy to set up and the individual volume controls meant she could adjust them to her hearing loss.” Katherine, mum to Skye, 14, who is severely deaf.

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NDCS Families • Winter 2015

“She can hear the TV and we can have it at a normal volume for us all.” Helen, mum to Keeley, 13, who is moderately deaf.

Room loops If your child has a hearing device with the ‘T’ setting then you could install a room loop. The wire goes around the edge of the room, or you can get a loop pad which fits beneath a seat cushion – it links to the loop amplifier which connects to your TV. These are a popular, permanent solution.

Radio aids If your child has a radio aid you can easily connect the transmitter to your TV, or other entertainment device, with a simple cable or by using the transmitter’s microphone. The digital or FM signal will transmit the sound directly to your child’s receivers, either attached to their hearing devices or body-worn.

0808 800 8880 • www.ndcs.org.uk


TECHNOLOGY “Our son found it very good for watching TV and DVDs. He could pick up speech much better, was able to follow what they said and laugh at the jokes.” Sara, mum to Jan, 12, who is mildly deaf.

Wireless TV listeners These are especially designed for listening to TV or music. A base unit connects to the TV and transmits infrared, FM radio or digital signals to a receiver unit, usually worn around the neck. The receiver will have a neckloop, stethoset (a type of earphone with acoustic tubes instead of wires) or earphones – so these can be suitable whether your child wears a hearing device or not.

Personal listeners These are small amplifiers and can be connected to the TV either with a long cable or a separate transmitter. They amplify the sound and your child can listen through headphones or a stethoset, or they can use a neckloop or earhooks if they have a hearing device with the ‘T’ setting. Unlike most TV listeners, personal listeners can also amplify conversations.

Digital streamers

With BSL signed programmes an interpreter is shown at the bottom All hearing aid manufacturers make of the screen, so you can watch the digital streamers which work with programme and the signing at the their latest hearing aids, cochlear same time. There are a lot fewer implants and bone-anchored hearing aids (see www.ndcs.org.uk/streamers signed programmes available on the TV than subtitled ones. At the for more details). These streamers moment BBC and ITV only provide allow hearing devices to be wirelessly signing for 5% of their programmes linked to a wide range of devices, and as most of these are broadcast including the TV, tablets, laptops and late at night, you might need to record smartphones, using them. Bluetooth. The BBC shows signed versions of mainstream programmes in the Sign Zone, and See Hear is a programme specially made for the deaf community. “My son noticed a difference straight CBeebies broadcasts away. Before, he could hear the TV but Something Special, there was no clarity of speech so he was which is designed constantly asking ‘what did he say?’ but for children in with the streamer he could make out much the early stages more and has been able to sing along with of language his favourite character for the first time.” development Joanne, mum to Sion, 11, and supported who is severely deaf. by Makaton signs and symbols. For other signed programmes go to www.bslzone.co.uk.

Subtitling and signing Subtitles are available on many TV channels – in fact the BBC subtitles 100% of the programmes on its main channels and ITV and ITV2 currently subtitle 98%, but smaller channels have far lower levels of subtitling. Subtitles are easy to access, either through your remote control or the TV main menu, and will usually describe sound effects as well as dialogue. They may help your child’s literacy as well as increasing their enjoyment of watching TV. Many home entertainment systems will allow you to record programmes with subtitles and they’re available on most DVDs and Blu-ray discs, but please check before purchasing.

Watching online or on-demand? Many of us enjoy watching TV programmes and films on mobile devices and use catch-up services (like BBC iPlayer) or on-demand services (such as Netflix or Amazon Prime). Whatever you watch on, the products described here can help your child hear the programmes better. The levels of subtitling and signing are far lower on these services and currently 80% of on-demand providers offer no subtitles at all. The UK Government has recently confirmed it will review this area and aims to introduce new legislation next year.

To find out more about these products and others, go to www.ndcs.org.uk/technology. If you can’t decide which of these products might suit your child best then why not borrow one from our Adam Technology Test Drive loan service? www.ndcs.org.uk/tech_drive www.ndcs.org.uk/livechat • 0808 800 8880

NDCS Families • Winter 2015

37


Reaching new families After her son was diagnosed as profoundly deaf, Jo found the support of others in the same situation invaluable. This led her and two friends to start their own local group, Listen hEAR, to reach other families.

My name is Jo. My husband is Donnacha and we have three kids: Odhrán is six, our little girl Ciara is four and Fionn is three. Fionn passed his newborn hearing screening, but at five months we spotted something was wrong. I have a vivid memory of him waving at me through the window but when I came into the room and tried to speak to him, he just carried on looking through the window. We took him to the paediatrician, and after being referred to a consultant he was diagnosed as profoundly deaf. Having no experience of deafness before, we were completely devastated and thought ‘what are we going to do?’ “We got involved with NDCS early on. I was given a leaflet at one of the initial appointments and when I looked at it I thought ‘why does this look familiar?’ It turns out we’d been donating to NDCS for years. We attended a newly diagnosed weekend, and it was the best experience ever. As well as having the chance to meet other parents we were introduced to some local groups and even though they were far away from us we joined their online networks and started attending some of their events. “Fionn’s Teacher of the Deaf put me in touch with Lindsey, and I met Catherine through our social worker. Both live locally and have children of a similar age to Fionn who were also newly diagnosed. We started meeting up for coffee and I found their support invaluable. Try as you might with other family and friends, there’s an unspoken understanding amongst parents of deaf children and it was fantastic to be able to sit down and talk about everyday

38

NDCS Families • Winter 2015

Catherine

Jo

Lindsey

things – like how to get the kids to keep their hearing aids in! “We realised that there were loads of other families in the area and we wanted to be able to extend the support we were getting from each other to them. We also wanted our kids to have deaf friends and for our wider families to have a chance to meet regularly. “I got in touch with the Local Groups team at NDCS, who were very helpful and talked me through the process of setting up a group. At the same time I contacted a local church to see if we could use their hall. They kindly agreed, but I was slightly taken aback by all of the formal documents they asked for. Luckily the Local Groups team supported us with getting our insurance, child protection and official governing documents in place so we eventually had all of the information we needed. 0808 800 8880 • www.ndcs.org.uk


LOCAL GROUPS

Ardfern, Wikipedia -CC BY-SA 3.0

“Between life and kids, the whole process of setting up a group took longer than expected, but we finally held a launch party on 27 June 2015. We promoted the event through our Facebook page and invited parents, speech therapists, Teachers of the Deaf, NDCS – everyone that we could! Six families attended and the day went even better than expected. The kids played pass the parcel and had rhyme time, whilst the parents had a chat. We organised the event on a Saturday which meant that mums and dads, older siblings and even grandparents could attend. It was fantastic to have the whole family involved as before it was only the mums that would meet. What really made the day was that a family whose daughter had only just been diagnosed attended. It was great to be able to share our experiences with them and to lend our support at the start of their journey. “Following on from the launch party we meet once a month on a Saturday. For now we’re happy to be meeting and getting to know each other. Over time I hope as we involve new families and get more volunteers on board we’ll grow organically. We’re also starting to think about fundraising, as we’d like to raise some money for music www.ndcs.org.uk/livechat • 0808 800 8880

therapy sessions. Hopefully in 10 years’ time Listen hEAR will be an established local group and still going strong. “The driving force of our group is being there to support one another. When I think about how I felt when Fionn was first diagnosed – I didn’t know anybody or anything. We want to be able to reach new families, but at the same time be there for one another as we come across new experiences. If there is a local group in your area, I’d encourage you to join it. If there isn’t, start one! Don’t be afraid to take it slowly, make sure you have the support of others. You need at least three people to get started – one person couldn’t do it on their own. And remember that the NDCS Local Groups team are on hand to guide you through the process.

Find out more about local groups at www.ndcs.org.uk/localgroups, find your nearest one at www.ndcs.org.uk/ findalocalgroup, or contact the Local Groups team on localgroups@ndcs.org.uk for information and advice on starting your own. NDCS Families • Winter 2015

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.

The Silent Striker By Pete Kalu Hope Road Publishing, 2015 £6.99 11–13

14+

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

0–4

5–10

11–13

14+

with ACN Children additional complex needs

“This book is about a boy called Marcus who is a really good footballer, but then starts to go deaf and starts skipping school. “I thought the book was very good, but I didn’t like how Marcus got depressed when he found out about his deafness. He started behaving poorly and at one point walked out of a class, which got him kicked off the school football team. He then starts not interacting with his family. “Apart from being an interesting read for people who love football, this book would be good for those who go deaf suddenly. It would help them to think about the different

ways they could react – get angry and get into trouble, or try and cope and continue working hard. “The Silent Striker is an amazing book and I think all schools should have a copy of it in their library to raise the profile of deaf children. How many other deaf heroes do you know in books?” Robert, 13, who is severely to profoundly deaf and wears hearing aids. Robert

Destiny and Faith’s Summer Adventures Book 2 in the Destiny and Faith series by Teddy O’Malley CreateSpace Independent Publishing Platform, 2013 £3.23 5–10

11–13

“This is a great story about twin girls, Destiny and Faith, who make a new friend, Dustin, in the summer holidays. Dustin’s family have just moved into a house that has been empty for years, that everyone thinks is haunted. Dustin is deaf, which isn’t a problem for the girls as they know American Sign Language (ASL). “I really liked that the hearing girls could sign, because that meant the deaf boy, who was new to the area, was able to make friends. 40

NDCS Families • Winter 2015

“The story was light-hearted and fast paced, and carried you along easily. It has eight short chapters which we read quickly in just two sittings. The story is really funny too; it kept me interested and made me laugh. “At the back of the book there are graphics of the ASL alphabet and numbers 0–9. There is also a link to a website which has resources for learning different languages, including ASL. We had fun with this!” Elfed Elfed, 12, who is profoundly deaf. 0808 800 8880 • www.ndcs.org.uk


REVIEWS

Ali and Aidy go to the Beach By Hameeda Raj www.deaference.com, 2013 £4.99 0–4

“This picture book tells the story of Ali and his friend ‘Aidy’, his hearing aid. The story introduces Ali, the adventures that he and Aidy have and all the sounds Aidy helps Ali to hear. Xander had great fun reading this book, looking at the pictures and making a long list of all the things his hearing aids help him to hear. “The book was great for having discussions about deafness with younger children, and Xander related to Ali as a character. He especially enjoyed the Sign Supported English (SSE) layout of the book, with the relevant British Sign Language signs pictured above the words of the story, so we could read and sign together. “The story is simple, but that made it easy to follow. Xander enjoyed reading

the book multiple times, meaning he could practise his vocabulary and signing. We enjoyed adding actions and expressions to the story and ‘acted’ part of it out, resulting in much laughter. “This book is a useful resource for families with a younger deaf child, or families that use SSE. The layout was clear and the pictures were bright and colourful.” Kate, mum to Xander, 3, who has severe to profound hearing loss, and Rowan, 1.

Kate, Xander and Rowan

Friedland Libra+ portable door chime £48.50 Available from Action on Hearing Loss or Connevans 0–4

5–10

11–13

14+

ACN

“The Libra+ door chime is one of the loudest doorbells I could find. It’s wireless so very easy to set up, and has a good range so can be placed anywhere in the home. “It has a variety of chimes and can be set to show a flashing light when pressed which my son liked. Other accessories can be purchased if desired, for example, a motion detector which alerts you when someone enters your property, or the option to connect it to your landline phone so that it chimes when the phone rings. “Overall, it is a very good product and I have purchased one myself after trying it from the NDCS Technology Test Drive.” Mohammed, dad to Yusuf, 3, who is moderately deaf.

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

NDCS NDCSFamilies Families••Autumn Winter 2015 2014

41


Helpline

What do you think of our information?

Freephone 0808 800 8880 helpline@ndcs.org.uk www.ndcs.org.uk/livechat See www.ndcs.org.uk/helpline for details of our opening hours and free interpreter service. Q. We’re moving areas – how will this affect my child’s statement/ Education, Health and Care (EHC) plan? What else should we consider? A. If you’re moving, you should let your child’s school

and the local authority* (LA) know. Talk to your current and new LA about your child’s needs and the best way of continuing to meet them. When you move, your child’s school will send all the records to the new school and your old LA will send your child’s statement/EHC plan to your new LA. Within six weeks of receiving this, the LA must confirm when they will review your child’s statement/ EHC plan or whether they will carry out a new statutory assessment. If you live in England the assessment will be under the new special educational needs (SEN) legislation introduced last September. In Scotland, if your child has a coordinated support plan it should be transferred to the new LA within four weeks of you moving. The new LA may decide to review the plan as soon as it’s possible or you can request a review. If your child goes to a non-maintained, independent or residential school, the new LA must pay any fees your previous LA paid, at least until they change the statement/ EHC plan. Other things you might want to consider when moving include whether any schools in your new area have deaf units, transport policies, numbers of Teachers of the Deaf and numbers of children on their caseload. For further information see: • our webpage about SEN www.ndcs.org.uk/sen • our Which School for Your Deaf Child? factsheet • our Services in your area webpage www.ndcs.org.uk/localsupport.

Later identification of deafness (www.ndcs.org.uk/ lateridentification) “This webpage is for parents and carers of children whose hearing loss wasn’t picked up by the newborn screening, or is progressive, late onset or acquired. “It’s useful because it tells you how your child’s behaviour may change due to their hearing loss, something that isn’t mentioned elsewhere. It also covers how you and professionals can support your child to adapt to their deafness. I’d like to see more about progressive losses, as some children transition later from hearing aids to cochlear implants. “Belle’s deafness was picked up when she was two, and when she was seven she lost the remainder of her hearing. If this information had been around when she was diagnosed I wouldn’t have felt so isolated. I spent a lot of time on the phone to NDCS but this webpage gives the information I needed. “I’ve met a lot of parents with deaf children, but none with later identification. For NDCS to create this webpage that says ‘you are not alone’ is reassuring. I’d definitely recommend it to others.” Anna, mum to Milli (9), Belle (7), and Jasper-John (2). Belle has a Belle profound hearing loss.

*or Education Authority in Northern Ireland 42

NDCS Families • Winter 2015

0808 800 8880 • www.ndcs.org.uk


NDCS RESOURCES

What’s new from NDCS?

www

Learning sign language

What type of information is it? A webpage available at www.ndcs.org.uk/learningBSL. Who’s it for? Parents/carers of deaf children who want to learn sign language. What’s it about? Information to help you decide whether sign language is right for your child and how to go about learning it. You might also like: the Communication section of our website. www.ndcs.org.uk/communication

www

Playtime tips and ideas

What type of information is it? A webpage available at www. ndcs.org.uk/playtime. For more information, including additional play ideas, a factsheet, co-produced with The British Toy & Hobby Association, is also available in print or to download from our website. Who’s it for? Parents/carers of deaf children under five. What’s it about? Examples of how different types of play and toys can help children’s development. The ideas are simple, cheap and practical. You might also like: our apps resource available at www.ndcs.org.uk/apps.

www

Cleft palate and deafness

What type of information is it? A webpage available at www.ndcs.org.uk/cleftpalate. Who’s it for? Parents/carers of deaf children who have a cleft palate. What’s it about? It explains what cleft lip and cleft palate are, the type of deafness commonly associated with cleft palate and how the deafness can be managed. You might also like: the updated childhood deafness section of our website at www.ndcs.org.uk/childhooddeafness.

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

We need you!

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

 Supporting Your Child (14 years+) in Making Choices About Their Education and Future Careers What type of information is it? A factsheet available in print or to download from the NDCS website. There are separate versions for England, Northern Ireland, Scotland and Wales. Who’s it for? Parents/carers of deaf young people. What’s it about? Information about how to support your child to make choices about their future as they approach adulthood, the responsibilities schools, local authorities and others have, and the support deaf young people can receive post-16. It also covers how to complain if they don’t get the right provision. You might also like: the Leaving school section of our website www.ndcs.org.uk/leavingschool.

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

NDCS Families • Winter 2015

43


? n o s ’ t a h W

ts coming en ev E E FR c ti as nt fa f o We have lots w of them. fe a st ju f o er st ta a s e’ up, and her First Time Away Weekends for 8–11 year olds

Weekends for Families with Deaf Children aged 0–2 years

First Time Away Weekends involve a one night stay at an activity centre – they’re perfect for children who want to try out being independent for the first time. We offer a fun and friendly environment with lots of activities, such as climbing, abseiling, orienteering and arts and crafts for children to try.

Aimed at families who haven’t attended an NDCS event before, these non-residential weekends provide an opportunity to gain a better understanding of topics around deafness, communication and learning through play and reading. They will be led by experienced NDCS staff, and specialists will join us to share their knowledge and understanding.

12–13 March, Derbyshire, East Midlands

Day events for 8–16 year olds Our one day events are a great opportunity for your child to meet other deaf children who live locally. We offer lots of different activities, from sports and outdoor activities to creative workshops led by deaf and hearing artists.

Get Creative Day, 30 January, Doncaster Get Active Day, 6 February, West Midlands Get Creative Day, 13 February, South West Get Creative Day, 19 March, East Midlands

Get Creative Weekend for 11–15 year olds Deaf young people will take part in designing costumes, building props and painting a set. Through drama, directing and detective work the challenge is to get the audience on the edge of their seats for a new, exciting theatrical spectacular. No previous experience necessary! The activities will provide opportunities to build confidence and learn new skills, meet other deaf young people and make new friends, be independent and develop communication skills. Young people will also have access to relevant NDCS information and advice.

18–20 March, Lewes, South East

“Well organised event with fantastic support by enthusiastic team. All communication needs supported.” Parents of a deaf young person

23–24 January, Bristol 27–28 February, Edinburgh 27–28 February, Wrexham

Learning about Your Child’s Deafness A one day event ideal for families with a deaf child aged 3–12 years who has been diagnosed in the last 18 months. This information day is aimed at families who haven’t attended an NDCS event before. It provides a safe and relaxed environment to meet other families, share stories and find out more about topics around deafness, communication and audiology.

27 February, Plymouth 5 March, Leeds

National Deaf Youth Football Tournament Want to be crowned champions of deaf football? The ninth National Deaf Youth Football Tournament will take place in spring 2016. The emphasis of the tournament is on fun, raising awareness of deaf football and celebrating junior deaf football clubs. The winning teams in the under 13s, under 16s and under 18s age groups will be crowned National Deaf Youth Football Champions and take home the coveted trophy. The tournament is open to all deaf football teams, all deaf youth groups and any mixed deaf and hearing teams who want to play – and there’s a southern and a northern tournament.

6 March, Reading 20 March, Liverpool

To book a place on any of our events, or for more details, visit www.ndcs.org.uk/whatson. 44

NDCS Families • Winter 2015

0808 800 8880 • www.ndcs.org.uk


EVENTS

l o o h c s r o f d il h c r u o Preparing y Starting school is one of the biggest milestones in any child’s life. Mums Anisah and Neha tell us how attending an NDCS information day, ‘Starting School: Education rights and responsibilities’, has helped them to prepare. “My hope is that Esah will flourish at school and have access to everything everybody else has.”

Anisah is mum to three-year-old Esah, who is moderately deaf. She says: “I went to the event because I was hoping to get some useful information to help me and my son be fully prepared for school. For me, the best part was being able to share my thoughts and concerns with other parents. At the equality and inclusion session I also found out that deaf children are supported by the law, and that Esah can’t be discriminated against for having a hearing loss. “The event was very useful and we enjoyed it. We recently moved to Dubai for a year and Esah started school there in September. Using the information we gathered at the NDCS event, we have spoken to Esah’s teachers about how they can improve acoustics in the classroom, and they are now considering putting up some curtains to help. We’ve talked to the teacher about how to get Esah’s attention and how to use open questions to check his understanding. We’ve also given the school some of the information resources we picked up.

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

Neha is mum to three-year-old Udi, who has moderate to profound bilateral deafness. She says: “At the moment we’re considering if our daughter should go to a specialist school or a mainstream school with special support. We went to the information day because we wanted to understand more about Udi’s rights, what we should expect from a school and what we should demand of them. “The best part was being able to meet other parents with deaf children and share tips and experiences. It was also useful to get an idea of the services other parents receive from their local councils. I found out more about how to decide which school is right for my daughter and gathered some information about using radio aids.

“I really hope when Udi starts school she’ll be able to interact with other children, become independent and pick up language. She doesn’t lack confidence at the moment but I don’t want her to lose what confidence she has as she becomes more and more conscious of her deafness. “Although it would have been great to have had more time to meet other parents with deaf children, I would definitely encourage other parents to attend this event.”

Starting School: Education rights and responsibilities This NDCS information day is aimed at families with deaf children aged two to four years old. At the event you can learn more about support for deaf children at school and you and your child’s rights. There’s also the chance to share tips and experiences with other families. Workshops include: • finding the right school • ensuring equality and inclusion • learning about local services.

 isit www.ndcs.org.uk/whatson to find an event near V you. For more information about support for children with special educational needs (SEN) and the recent reforms in this area go to www.ndcs.org.uk/SEN. NDCS Families • Winter 2015

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 an Internal Auditor/ Risk Manager because… “I enjoy looking at different business processes in a company and connecting the dots between finance, IT and HR, for example. I work for an international investment manager, providing independent assurance to the company’s Board that it has effective risk management and internal control systems to meet legal or regulatory obligations. “After graduating, I trained as an accountant then took further professional examinations in corporate treasury. I’m severely deaf, and meetings can be challenging, particularly when using video conferencing. I always tell people I’m deaf when I first meet them. What does your child Usually, people are intrigued and want want to be when they to know more – particularly now I have grow up? a cochlear implant. Showing them how For more information on the magnet works is a good icebreaker. careers, check out our section “Outside work, sport plays a big part about life after in my life. I work closely with the Tennis leaving school at Foundation, Great Britain’s leading www.buzz.org.uk/ tennis charity, to promote inclusion of leavingschool. deaf people. I also managed the Great Britain team of 90 athletes at the 2005 Deaflympic Games in Melbourne.” Nick Brookes

I’m a Children’s Critical Care Nurse because… “I’ve always wanted to work with children and love being around them. I look after very sick children after surgery, transplants, serious illness or trauma. It’s very rewarding to know you've made a difference, especially when children come back to visit after they’ve recovered. “I have severe hearing loss in one ear and profound in the other. I studied for a children’s nursing degree, with support from note-takers in lectures and a British Sign Language (BSL) interpreter for group work and presentations. I made sure my mentors knew about 46

NDCS Families • Winter 2015

ROLE MODELS

I’m a Virology Scientist because… “I’m fascinated by how viruses mutate and evolve, plus the field of virology is very unpredictable! “In my current job I specialise in respiratory viruses, testing samples from GP practices and hospitals. I also get involved in flu vaccine studies, analysing results and making sure quality standards are maintained. “I’m profoundly deaf and have a cochlear implant. I have a BSc in Biomedical Sciences and MSc in Medical Diagnostics, and used a note-taker and sign language interpreters at university. I previously specialised in animal virus diagnostics, until I moved to Public Health England a year ago. “My job involves lots of communication so I explain how colleagues can make things easier for me. Most people I’ve worked with have been deaf aware and accepted me. It’s important to be upfront about your deafness at the start. “I’m proud of my achievements; it wasn’t easy to get to this point but my perseverance and hard work have paid off.” Clare Halliday

my deafness before I started each placement, which made a real difference. “At work I use an FM system for handovers first thing in the morning and a BSL interpreter for meetings or group discussions. “My most recent achievement was completing the Spartan race with some friends, which was very hard and muddy! As long as you have common sense, try to beat barriers and believe you can find solutions, you can go a long way.” Asha Hylton 0808 800 8880 • www.ndcs.org.uk


For residential and day pupils aged 3 - 19 years

“Our daughter has achieved far more than we thought possible.” - Parent

“Achievement in the sixth form is outstanding.” - Ofsted 2012 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, L23 6NE

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

Where every voice is heard and celebrated


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

Dahlia

HR Assistant

Sam

TV Production Manager

Helen

PhD Student

â&#x20AC;Ś Mary Hare School ! We all know how quickly time passes. If you are considering Mary Hare for your son or daughter for next September, you really need to get in touch now. Pick up the phone today. For more information or to arrange an individual visit, please contact Natalie Ross: (n.ross@maryhare.org.uk or 01635 244215) or visit our website www.maryhareschool.org.uk

Securing the future of deaf children and young people

Families magazine, issue 39 (winter 2015)  

The winter issue of Families magazine is packed with stories from families and information about childhood deafness including: Lucie and Sc...

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