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Newsletter

Affiliated to the Down’s Syndrome Association

Issue 14 / Summer 2007

In this issue . . . AGM . . P4 Teenage Disco . . P5 Focus on speech therapy . . P7

The R.O.S.E. Project . . P11 Go Karting 2007 . . P12 Conor’s day with Charlton . . P18

Well done everyone . . P19 Chris’s travels . . P22 Ready steady cook . . P26

. . . PLUS MANY MORE ARTICLES AND PHOTOS

Reg Charity No: 1094957

E-mail: downsyndromee21@aol.com

Patrons: Nik Kershaw, Cllr Joe Pike


Branch Committee Members Chairperson - Greg Stuttle The Foundry, 16 Pemberton Field, South Fambridge, Rochford, Essex SS4 3BF. Tel: 01702 200320 Vice-Chair - Paul Smith 84 Silverdale Avenue, Westcliff-on-Sea, SS0 9BD. Tel: 01702 307299 Secretary - Deidre Clement Birch Coppice, Stondon Road, Marden Ash, Ongar, Essex CM5 9BU. Tel: 01277 363316 Treasurer - Andrew Clement Birch Coppice, Stondon Road, Marden Ash, Ongar, Essex CM5 9BU. Tel: 01277 363316 Newsletter Editors - Sabine & Kevin Nussey 118b Moulsham Street, Chelmsford, Essex, CM2 OJW. Tel: 01245 351161 Member - Margaret Coare 107 Plumpton Avenue, Hornchurch, Essex RM12 6BB. Tel: 01708 454889 Member - Samantha Russell 48 Roman Road, East Ham, E6 3SR. Tel: 020 747 41735 Member - Liz Garwood 18 Witham Lodge, Witham, Essex CM8 1HG. Tel: 01376 502772 Member - John Talbot 3 Risebridge Road, Gidea Park. Tel: 01708 730594 Member - David Adams 34 Lower Crescent, Linford, Stanford-le-Hope, SS17 0QP. Tel: 01375 360974 Member - Rob Eveleigh 10 Lancaster Road, Rayleigh, Essex, SS6 8UP. Tel: 01702 528501 Member - Sue Gallagher 49 Harold Gardens, Wickford, Essex, SS11 7EP. Tel: 01268 570520 Member - Ann Irvine Old Pond House, Braiswick, Colchester, Essex, CO4 5BG. Tel: 01206 854803 Member - Mary Paton 53 Rushdene Road, Brentwood, Essex, CM15 9ET. Tel: 01277 231065

DISCLAIMER

01277 365618 email: downsyndromee21@aol.com

Barking and Dagenham Teresa Baumann Tel: 020 8594 1056 Chelmsford Anne Hickey Tel: 01245 266750 Colchester Simon & Tracey Barnett Tel: 01206 241112 Corringham & Thurrock Teresa & Kevin Hurley Tel: 01375 678406 Harlow /Loughton Tracey Smith Tel: 01279 451313 Havering and Brentwood Elaine Catmull Tel: 01708 765232 Newham, East London Samantha Russell Tel: 020 74741735 Redbridge Evette Saffron Tel: 020 8505 4258 Saffron Walden Jane Flood Tel: 01799 599451 Southend Alison & Paul Smith Tel: 01702 307299

Contributors to this newsletter express their own opinions. These do not necessarily reflect those of the Editor or of Down Syndrome Extra21.

PARENTS’ HOTLINE

Local support groups and contacts

Wickford Sue Gallagher Tel: 01268 570520 National Office Langdon Down Centre 2a Langdon Park, Teddington TW11 9PS Tel: 0845 230 0372 Fax: 0845 230 0373 Email: info@downs-syndrome.org.uk Web: www.dsa-uk.com

The Sarah Duffen Centre, Belmont Street, Southsea, Hampshire. PO5 1NA Tel: 023 9285 5330 Website: www.downsed.org Email: enquiries@downsed.org

National Office 17 Cantilupe Close, Eaton Bray, Dunstable, Beds LU6 2EA Tel: 01525 220379 Website: www.downs-heart.downsnet.org Email: Downs_Heart_Group@msn.com

If you want immediate information about Down Syndrome Extra 21, the committee has provided a direct telephone line to the Secretary, who can provide help and information. 2


Education Information Days October 5th / 6th ON FRIDAY and Saturday October 5th and 6th we will be welcoming Professor Sue Buckley with two members from her team to lead two information days on educational topics. The Friday one, taking place in Wickford, is held in collaboration with Essex LEA and is for teaching professionals only. The one on Saturday at Moulsham Junior School in Chelmsford is for parents and carers of children with Down Syndrome. Professor Buckley is an internationally recognized expert in education and speech and development of children with Down Syndrome, and she and her team have put

together a very interesting programme for the two days. After a keynote address by Prof. Buckley on the specific learning needs of children with Down Syndrome, there will be workshops on topics such as teaching maths and literacy skills, speech and language, developing memory skills, behaviour management, self help skills and social inclusion. We are anticipating a high demand for these workshops, so to guarantee a place please return the enclosed registration form as soon as possible. Schools should receive an invitation through the LEA directly or contact Elaine Brace on 01245 436903

Gillian Bird BSc (Hons), PG Dip (Is) Head of Education and Advisory Services Gillian Bird is a psychologist with more than 20 years of experience in the field of developmental disability. Before joining the Trust team in 1985, Gillian had several years experience of residential work in specialist services for people with severe learning disabilities and challenging behaviours. Gillian has acquired considerable expertise in the support of children with Down syndrome in mainstream education placements and advises families and schools on all aspects of such placements.

Professor Sue Buckley OBE, BA (Hons), CPsychol, AFBPsS Director of Research and Training Services. Emeritus Professor of Developmental Disability, Department of Psychology, University of Portsmouth, UK Our services and research team is led by Professor Sue Buckley, the Trust's founder and one of the world's leading researchers in the education and development of children with Down syndrome. Sue Buckley is a Chartered Psychologist with over 30 years of experience in the field of developmental disability. Sue is knowledgeable about most aspects of the development of children and adolescents with Down syndrome, but her special area of expertise is cognitive development, particularly language, literacy and memory development. Sue also has first hand experience of many of the issues that affect families as the eldest of her three children, Roberta, has Down syndrome and was adopted into Sue’s family when a baby. Roberta is now an adult.

Julie Hughes BSc (SLT), MA-CCC-A, Member of ASHA Speech and Language Therapist/Audiologist Julie Hughes is a qualified Speech and Language Therapist/Audiologist who joined the Trust’s staff team in 2005 and contributes to a wide range of our training, consultancy, publishing and early intervention activities. She previously worked with pre-school deaf children and their families at The Elizabeth Foundation, facilitating speech, language and listening skills that enabled children to be educated in their local mainstream settings. Her work included providing support, guidance and education to parents and families, running pre-school language groups for parents and children, and teaching a broad and balanced pre-school curriculum. She also organised education classes focused on issues surrounding deafness, language, and listening development for the whole family. 3

SPONSORED BY


Focus on What Did You Say? A Guide to Speech Intelligibility in Speech People with Down Syndrome Therapy 17th March 2007 THE FEEDBACK from people who attended the Speech Therapy lecture and discussion by Kim Merry on 17th March was extremely positive from all who attended. As it transpired, the main need seems to be training for the parents, carers and teaching assistants. Kim Merry felt this would be a positive way forward, and is willing to provide this for Down Syndrome Extra 21 members one day a week. The service Kim could offer would consist of an initial assessment of the child, and then a 10 week course of speech therapy training specific to the child’s needs. The training may take place in a group of parents/carers/teaching assistants whose children all have a specific need in common. Down Syndrome Extra 21 are willing to pay for the initial assessment, but would charge a much subsidized fee for the training course. At present Kim has offered us a venue free of charge in Romford for which we are very grateful. Depending on the uptake of this assessment and training, we may look to expand into other areas to ease the traveling for families. If you would be interested in taking part in the training and/or would like more information about what we offer, please contact Deidre Clement on 01277 365618.

DO YOU worry that no one outside of your immediate family can understand what your child says? This inspiring DVD, by one of the most respected speech-language pathologists (SLP)in the field of Down syndrome, looks at the importance of speech intelligibility (understandable speech) and what makes clear speech challenging for people with Down syndrome. Dr. Libby Kumin explains in easyto-understand terms the components of speech that parents and SLPs should pay attention to, helping them identify what a child or adult needs to work on in speech therapy. What Did You Say? reminds parents that, like it or not, the quality of their child's speech often reflects on how society perceives their child's abilities. Dr. Kumin's positive outlook reassures viewers that improvement is possible, especially when you know what the problems are. The video carefully defines the factors that contribute to understandable speech. These include such issues as anatomical factors (size of a child's tongue in relation to the size of his mouth, for example), articulation, intonation, the ability to sequence sounds in the proper order, the rate of speech, and social use of language (making eye contact, using facial expressions and gestures to get a message across). The DVD features dozens of boys and girls with Down syndrome, from preschool age to young adulthood, showing various levels of speech intelligibility. They may be working on a problem area and giving parents a chance to hear what different speech problems sound like, or demonstrating understandable speech and showing what can be achieved with effective speech therapy. The DVD also features a bonus section with useful tips on writing effective Individualized Education Program (IEP) goals related to speech intelligibility.

This comprehensive overview of speech intelligibility problems is useful to parents of young children who speak but are not easily understood. Libby Kumin, Ph.D., CCC-SLP, is a professor in the Department of Speech-Language Pathology/Audiology at Loyola College in Maryland, where she founded the Down Syndrome Center for Excellence. The DVD will be available from http://shop.downsed.org in the near future or from Amazon Marketplace http://www.amazon.co.uk/What-Did-You-REGIONNTSC/dp/189062778X at various prices. 4


FORTHCOMING EVENTS

Reach-out Concert

Charity Ball

The DS Extra 21 Charity Ball takes place in the Essex Barn Suite at The Chichester, Old London Road, Rawreth, Nr Wickford, Essex SS11 8UE on Saturday 20th October 2007 from 7.15pm to 12.45am

THE WALTHAM SINGERS invite you to their first ever Reach-Out concert for children with special needs and their families. The event takes place on

Tickets are £35 per person and include a three course meal and live music for dancing provided by ‘Starfish’. Menu choices are taken on the night and with a choice of around seven starters, 10 main courses and nine desserts to select from, everyone's tastes should be well catered for.

Sunday 30th July at 3.00 pm at St John’s Church, Moulsham Street, Chelmsford

Numbers will be limited so please complete the form inside this newsletter and return together with your cheque payable to ‘ Down Syndrome Extra 21’ ASAP. Tickets will then be issued.

This will be an interactive music event suitable for all the family – and it is free! However, to guarantee a seat please fill in the tear off slip on the flyer which comes with this newsletter and return it to: Sabine Nussey, 118B Moulsham Street, Chelmsford CM2 0JW

BOOKS & information THE DOWN Syndrome Association has published some new booklets for new parents, the extended family and friends.

• Down Syndrome – A Leaflet for Family and Friends (Stuart Mills DSA 2007) This was written in response to a frequent enquiry: 'My friend has had a baby with Down's syndrome - how can I help?' It contains basic information and advice on supporting your friend or relative.

• Down Syndrome - A new parent’s guide (Stuart Mills DSA, 2007) This booklet acknowledges the profound feelings experienced by many parents, addresses common questions and concerns, and includes practical tips on feeding and development.

Both leaflets can be downloaded from the DSA website on www.downs-syndrome.org.uk Members can order one copy of each leaflet free of charge.

The children in the photograph on the front page are Emily Harvey and Luke Weeks 5


AGM

10th June 2007 by Sabine Nussey

THE SUN was shining again on our third AGM at the Essex Police Sports Ground in Chelmsford on Sunday 10th June many families had come to make use of the facilities and enjoy the varied entertainment provided. Numbers were swelled by dancers from Dance 21, the Gateway Club, Footworks and the Mushroom Theatre Company. Since two of the dance groups had to leave early because of other commitments, the day kicked off with their dance displays. Slightly later than on the programme the official AGM started in the sports pavilion. Chairman Greg Stuttle gave an account of the various projects the charity has undertaken over the past year, while Treasurer Andrew Clement took us through the balance sheets. Thanks to some excellent fundraising and our chairman’s talent at persuading companies to donate to Down Syndrome Extra 21 (Waitrose, M&G, Three Valleys Water to name but a few) it retains a healthy balance, and the charity is able to finance all the projects planned for the coming year.

Greg thanking retiring committee member Mary Schultz

“Full steam ahead” for the new/old committee

Greg then presented a gift to Mary Schultz, who, after having been involved with the charity in one way or another for over 15 years, decided to step down. On behalf of the committee he thanked her for all her hard work and support over the past years. The rest of the committee agreed to stay on, Paul Smith taking over as vice chair from Sabine Nussey. The rest of the afternoon was given over to fun and games, and the bar, staffed by volunteers from

the police social club, did a brisk trade. The children bounced on the bouncy castles and went up and down the train track – well, some adults did, too. Then it was time for the Mushroom Theatre Company to present several of their acts. Later, Tony Williams entertained us on his keyboard, but this time he had stiff competition from the newly bought disco equipment, funded by M&G. The kit is very impressive and quite a few youngsters were eager to try their hand at D-j-ing. 6

Some well known tunes from that all time favourite Grease had young and old dancing along. All in all it was yet another successful day, and our thanks go to all the people who helped make it so, especially to Essex police for letting us use their facilities and staffing the bar, to The Little Red Train railway company, the Mushroom Theatre Company, Jean Hunter with Dance 21, the dancers from the Gateway Club and Footworks and Tony Williams with his keyboard.


D-I-Y Disco THANKS TO a very generous donation from M&G Staff Charity Committee (£1,073.89 exactly) we have been able to buy some state-of the-art Disco Equipment, with professional twin mixing CD decks, speakers and stands, lights, microphone, headphones and a smoke machine. With our teenage discos being very popular, the idea is to get some of the more music-mad youngsters properly trained to use the equipment and, in time, to D-J our discos and other events ourselves – although play lists may have to be vetted before to remove a glut of music from Grease and/or ABBA. you when we’ve arranged a venue for the training. The equipment was purchased from Thurrock DJ Supplies, and they are happy to run a workshop in a hall, where we could have maybe 10 teenagers using three or four sets that would be the same as ours.

What should our disco be called? We need a name that’s catchy and easy to remember, so get your thinking hats on. If your idea gets chosen, you will win a voucher from HMV for a CD. So off you go and think, think ,think . . .

Thanks to Rob Groves and Ian Sellen of Thurrock DJ Supplies for their help in selecting and supplying the disco equipment. If your son/daughter is interested in learning how to use the set, please contact Greg Stuttle on 01702 200320 and we will get in touch with

Write your suggested name on a postcard and send it to the editor, Sabine Nussey, 118B Moulsham Street, Chelmsford CM2 0JW.

Dancing the night away

Teenage Disco 21st April

7


Introducing the R.O.S.E. Project R.O.S.E. aims to help improve the quality of life for people with learning difficulties by offering realistic opportunities for supported employment Under the initiative, run in partnership with the borough’s Adult Learning Disability Team, some of the biggest business names in Havering, among them Matalan, Sainsbury’s and McDonalds, have given disadvantaged students job opportunities to boost their confidence and learn new skills whilst earning money. ROSE is the only project of its kind across South Essex to offer students support by having college job coaches working alongside them until they have gained enough confidence to work alone R.O.S.E. are based at Havering College of Further & Higher Education at the Quarles Campus. Their aim is, with the support of parents/ guardians and staff, to secure paid work placements for students/clients with learning difficulties. The support of a Job Coach will be available for as long as it is needed. They strive to provide an individual service to each student/client following an Individual Learning Plan/ personal centred plan to ensure the right employment for every student/client. Assessments are centred around the student/client which gives them control of the process and everything possible is done to achieve the student/client goals of employment as closely as possible. People with learning difficulties are the most marginalised group of people in our society. Employment is a vital part of promoting social inclusion and the

benefits are much more than just financial as it helps to build selfesteem and independence. If you would like further information someone from the R.O.S.E. project will visit you or have an informal chat over the telephone. Project Managers are: Sharon Gould & Jenny Carr and can be reached on 01708 455011 extension 4087 8


Ready steady cook

A BIG THANK you to Mark Brazier of Waitrose Southend for arranging the cookery class, in which 12 children took part. On the menu was a ST Clement’s cheesecake, and here you can see the youngsters crushing the biscuits, squeezing the lemons, stirring the mixture, decorating their cakes and, finally, admiring their finished products. Shame on the adults for eating up the Cadbury flakes! Waitrose have promised to organise another cookery class, so watch this space. 9


It’s

RACE by Paul Smith

time again,

35 BUDDING Lewis Hamilton’s on the grid and only one corner to aim for, yes it’s the Down Syndrome Extra 21 GoKarting Fund raiser 2007. This year’s event has been the most successful ever in terms of places wanted, with all 35 spaces taken by the end of February and a list of teams in reserve. With nearly £1,500 being bid for places on the starting grid before the green light had even been lit, it was obvious that this was going to be a bumper year.

On the grid and ready for green light

Damon and Joshua meeting some of the teams The winning team 'Miller' receiving their trophies from Damon

This year we also had the added incentive of having a chance to race against Ex Formula 1 World Champion Damon Hill and his 16 year old son Joshua who were both willing to race for teams that had bid for their services. Damon and Joshua kindly agreed to visit during the latter part of the day to offer their support and to present the winners their trophies.

Oi, you're going the wrong way

With the track at maximum capacity there were many mini battles taking place throughout the day. Some of the regular teams, Team Euro, Galliards and Monkey Knife Fight to name but a few, were back to stake their claim for the title but had stiff competition with new entries from Miller Insurance and GT Racing (Ford). In the end when the gaps were getting too big to recover, it was time to resort to that tried and tested way of winning, buying yourselves some laps and along with all the fines incurred by our wayward drivers, over £2,000 alone was raised. With the money received to date and more still expected, this year’s event will see donations exceed the £10,000 mark, so thank you to everyone for their efforts.

Above left - Damon and Joshua battling it out around Garda Above right - Damon in kart 33 trails son Joshua in kart 14

Members of the McAlpine team that raised over £6000 in sponsorship 10


folks With both experienced and novice drivers taking part there were many ooohh, aaahh, moments to be witnessed by the many spectators who turned out to support us all, but in the end after six hours of bruising racing and with all the drivers grinning like Cheshire cats from the exhilaration of taking part, the winners took the chequered flag. Congratulations to the Miller team. Charity Race Result: 1st Miller led by Paul Connelly 2nd Galliards led by Chris Hoyle 3rd Monkie Knife Fight led by Ben Corrigan But the real race winners were: 1st Miller led by Paul Connelly 2nd GT Racing led by Carl Newman 3rd The Wham Bam Thank You Ma’am team led by Rob Smith

Rubbing Shoulders with CELEBRITY HONEY and Billy from Eastenders (aka Emma Barton and Perry Fenwick) were the guests of honour at the DSA’s Bollywood Ball in the splendid surroundings of the East Winter Garden’ Ballroom at Canary Wharf – and some of our children had the chance to meet them when their dance group danced to entertain the guests there. In between courses of their Indian banquet, the two actors came out of the ballroom to shake hands, sign autographs and pose with the kids, who, along with the accompanying parents, appreciated their kindness very much. A big thank you again to Honey and Billy – and we just hope their dinner hadn’t gone cold!

Thanks again to everybody involved, both drivers and sponsors, without whose input this event would be impossible to run. Finally special thanks go out to all those who have spent a large amount of their own time and effort in organising another very enjoyable event. Hope to see you next year….

Chairman Greg welcoming Damon Hill to the event 11


Happy Birthda Birthdays March - June Best wishes to all the children and young adults who celebrated their birthday in March, April and June. March 2nd 6th 7th 16th 17th 18th 27th 28th 30th April 1st 2nd 7th 9th 13th 18th 25th 26th 27th May 1st 5th 6th 7th 8th

9th 10th 11th 13th 16th 21st 25th

Rebecca CLINCH 7 Leon KENT 8 Dominic WILLIAMS 2 Eliot BARNETT 12 Freddie McCONNELL 8 Ryan KERSHAW 17 Chloe DONOVAN 11 Lorieya-Jean NEWILL 6 Felicity SWIFT 11 Beth CORRIGAN 10 Elizabeth MELDER 17

Keira McALLISTER (2) Charlotte BISSELL 15 Harry LUSH 7 Michael TRUONG 16 Benjamin GARWOOD 9 Ethan PATEL 7 John BORAKIS 11 Christopher KEMP 25 Daniel CHARLES 15 Isabella COSTELLO 6

May cont’d 26th Harry CATMULL 13 George HORNSBY 3 30th Jack COLEMAN-POPE 8 31st Cameron SMITH 5 June 1st 2nd J 3rd 4th 7th 9th 12th 15th 15th 21st 23rd 24th

Samantha HAYTER 19 Hannah COULSON 1 Sam TALBOT 14 Isabella WINSTANLEY 4 Matthew CHAPMAN 16 Katie WILLIAMS 8 David MARTIN 18 Clara CHAMBERLAIN 6 Katie RODRICK 6 Katie BENNETT 6 Dominic SIMPSON 17 Daniel STUTTLE 5 Clare TRAYNOR 39 Many happy returns to Sam, who was 14 on 2nd June. Here he is on a trip to Sutton Hoo.

Conor HICKEY 15 Billy SWALLOW 11 Lauren HILAIRE 10 Thomas TURRAL 18 Jack DENTON 1 Anderley CHESTER-HELYAR 7 Thomas HURLEY 17 Jack BELL 14 Sarah KEMP 15 Vicky TADMAN 24 Oliver JACKSON 11 Adam NOGA 12 Rebecca BLAKEY 14 Ceri WILSON 14 Ashley HORIDE 8

Happy 17th Birthday, Thomas. Love and Best Wishes from Mum, Dad and Michael.

12


ay Happy birthday to Anderley, who was seven years old on 8th May 2000 .

Happy birthday to Daniel, who was 5 on 23rd June. With love from Mum, Dad and Tom.

Happy 8th birthday Ashley, with all our love, Mummy, Daddy and Louise XXX A lovely 24th birthday to Vicky. Lots of hugs and kisses from Mum, Dad and Carla.

Happy 18th birthday, Thomas. With love from Mum, Dad, Edward and all your family.

Many happy returns to Elizabeth, who was 17 on 30th March. With love from all your family. 13


Chris’s travels as told by his sister Claire and his Mum Margot

I’M CLAIRE, Chris’s 21 yr old sister. Chris has D/S and is 18 years old. I’m now at Birmingham Medical School and so I no longer live at home. Chris and I have always been close and after nearly three years into my studies, we still miss each other. Over Christmas, 2005, we talked of a plan for Chris to visit me at University for a weekend. Mum had agreed to bring Chris to a service station on the M1, and, having passed my driving test, I’d collect and return him to an agreed meeting place half way home. Last February half term, 2006, Mum was still travelling daily to Watford to visit Nana (Mum’s Mum) who was hospitalised for months, following a major stroke. (Granddad collapsed a few hours afterwards and then unfortunately died!) Meanwhile, whilst Mum was so pre-occupied with this situation, Dad had a brilliant idea!) . . . . It had been such a horrible time for our family – Dad was naturally the one who was a little more level-headed! Dad felt that it was just the right time to give Chris a ‘golden opportunity’ – to shine and give him a big sense of achievement!

Chris! Dad was gleeful at the prospect of surprising Mum, once all had been arranged! He phoned Virgin trains and asked about the possibilities for arrangements to transport Chris from Watford Junction to Birmingham by main line train, to ensure that a “disabled” passenger, travelling alone, could rely upon a discrete eye for his welfare. Virgin Trains assured Dad that a steward would do this task as part of their service and that their passenger could be handed over at each appropriate end of the journey at the appropriate station. Dad advised them that someone would be at each end of the return journey to hand or collect Chris and meet the steward. After this very helpful conversation, Dad then booked and paid ‘on-line’ for a return ticket for Chris.

We live in Billericay, and Dad thought that as Mum was travelling every day to Watford anyway at that stage, she’d be totally oblivious to the arrangements that were about to begin! As the main train line to Birmingham passes through Watford Junction Station, Mum would pass this station almost every day, but remained blissfully ignorant of Dad’s exciting plans for

In a slight change of plans, Dad then asked me to meet Chris on the train itself - two stations before the journey’s intended end. (I had to admit – this did make me feel rather nervous…quite a responsibility!!) Now all we had to do, was to break the news to Mum, now that every little detail had been arranged & paid for… This was also our Mum whose poor nerves, already, were, at this time, 14

far from being at their best, with all the events of the year so far!!!!

Margot takes over the story . . . . As a Mum, naturally, my feelings were mixed, once I’d accepted that arrangements for Chris had been made. Of course it was a good opportunity, and left to me, I realise that it would have been a very hard step for me to make for Chris. Effectively, the choices had been taken away from me – so I knew I had to seize this wonderful opportunity positively! When the day arrived for Chris’s weekend in Birmingham with his sister, he met the steward on the outward journey. Two stations before Chris had to get off, Claire, as agreed, got on the train to meet Chris there. She had been told that Chris was in carriage D but when she looked for him there was no sign of Chris. She rang her Dad, quite urgently! Dad told her that the steward was in Carriage G and that she ought to go there to find him to see if he could throw light on the situation. When she arrived at Carriage G, the steward explained his kindness! He had thought he could keep more of


“an eye” on Chris if he put him in a FIRST CLASS compartment , as the first class section was right next to carriage G, where the steward was based. And there Claire found her brother – panic over! Chris had a lovely weekend with Claire and her housemates/ university friends – who all asked him when he would be going again. For the return journey home, much help was available on the platform at Watford Junction to meet Chris– the station staff

said they would not allow the train to go on to Euston until we had collected Chris from the steward, and they showed us where on the platform we should stand to find Chris quickly. The journey to Birmingham on the train was such a big success - & proved to restore Chris’s trust in his own abilities as well as his ability to impress us, which was important to Chris, and to reassure us of his abilities too, to make his own way independently with regular transport services.

GAINING INDEPENDENCE by Margot Routledge

WE’D BEEN to The Michael Palin Centre for Stammering Children with Chris for a general assessment prior to receiving regular help there. They had stressed the importance of building on independence skills within a reasonably safe environment to boost self-esteem. Chris’s severe stammer has sapped much confidence, particularly as he’s also been found to have dyslexic tendencies and so has major struggles in areas of literacy too. Naturally, Chris has had much to try to overcome overall, as he‘d also had four holes in the heart until the age of nine, which made him chronically ill and delicate. We’d already found it difficult to build his confidence although our enthusiasm and efforts for his progress have always been in great abundance! So some practical advice from the Michael Palin Centre was most welcome. The initial advice from the MP Centre was to take a kind of holistic approach, working at giving Chris a generally intensive boost in all areas of his life. They looked in detail at areas where they felt we could all improve things for him significantly and most effectively. To get to know the young person and their family circumstances, parents are consulted at quite a deep, detailed and personal level. As groundwork, and for the 1st stage of Chris’s treatment, this was more important than tackling the “disfluency” of his speech itself (the stammer). Even though there was no big

improvement in Chris’s disfluency after the first stage, there were some noticeable, overall improvements. The initial advice was to take every opportunity, using friends and family to help in a certain kind of liberation for Chris through a variety of preplanned ventures. Chris only has one sibling, Claire, and our more distant family members live far away and are unable to help, so we had a number of more difficult restrictions. Nevertheless, we’d been given a few ideas to “keep the ball rolling” and develop these important opportunities for independence skills. This, we were reassured, would promote the all- essential confidence and self- reliance in Chris. One suggestion was for Chris and his sister (when home), to go to our local large town square, to give Chris 15 minutes to roam within the boundaries of the town square and then meet her back at a given point – say - MacDonald’s, at a set time written on a card to match this against his digital watch. The Michael Palin Centre stressed that research has shown the enormous potential for progress in independence skills for young people with D/S. The positives show that most progress is made between the ages of 14 to 25 years. Once young people with learning disabilities appreciate the great rewards, they are naturally encouraged towards other achievements of this nature. The 15

suggestion was also that it is important to “keep the ball rolling” in order to celebrate their success! When young people with learning disabilities, find themselves in a group situation where their general targets aim towards independent skills, the group activities in themselves do not develop an individual person’s independence although they serve as very supportive activities. Group work has value in training to develop good habits, but still does not build SELFconfidence or self- reliance in quite the same way as going it alone, in a reasonably safe environment! They stressed that parents had to give these opportunities individually to their own offspring to achieve independence in small tasks. (Quite obvious really, I suppose!) Therefore, travelling independently & regularly is one of the best ways to promote true independence and self- reliance. I must explain here that regretfully we had missed out on one very good opportunity for Chris to travel regularly on the service bus to college, starting from September 2005, when he started at Chelmsford College. Unfortunately, we as parents were very unhappy about the arrangements for using the normal bus service to take him to the college.


Gaining Independence Chris had taken part in Interact’s scheme in his last year at school, which we know is very successful in helping to train young people with learning disabilities, to use the bus services to travel to college daily. Chris’s school sent a great proportion of its students to Basildon College when it was time to leave the school. For this reason, Interact only practised bus journeys to Basildon, the most local college to Chris’s last school. They practised this for most of the year with the students at his school – as general practise in travel. Our difficulty was that we’d always intended that Chris would go to Chelmsford College, not Basildon College. Just before Chris left school he had just one practise with Interact, where he travelled to Chelmsford College, before we had to decide whether we would book a taxi –bus, or let Chris make the journey using the 100-bus service daily from Billericay to Chelmsford. This meant that we only had a week to make this decision before Essex County Council needed to know whether or not Chris would need the taxi-bus service. This deadline came upon us suddenly and unexpectedly when we had previously been led to believe that we would have the whole summer to practise…. and then decide. The journey home from college on the number 100 service wasn’t a problem, the journey to college, though, involved one large hurdle: crossing Moulsham Street to get into the grounds. It is an extremely busy road, with parked cars on either side and no pedestrian crossing. Two girls with Down Syndrome of the same age as Chris, who live in Billericay do manage this journey, including crossing Moulsham Street – the one that gave us concerns for Chris. This situation made our decision over this matter even more difficult, especially since Chris also knew that they would be using the service bus. He wanted to use it too and knew that he was capable of it, so why were they permitted to go by bus and

he not? It was, therefore, quite heartwrenching for us to ask him to go by taxi-bus instead, but it was concerns for his safety, which, we felt we couldn’t ignore. At that stage, Interact advised us “we should learn to let go”. But in considering reasonable safety we were not prepared to “let go” for the whole of the package deal. All parents have to view these situations in the light of their own and their children’s circumstances. The system didn’t allow us to select the positive possibilities for Chris, i.e. take the service bus on the journey home! For this reason, Chris now reluctantly uses the taxi bus service. He knew he could do the journeys & so did we! We felt only that the risk involved – on this one road – was too great in his circumstances. Chris had suffered a hard-hitting disappointment we knew we were responsible for this. It felt as if we had passed on to Chris – a loss of trust in his own abilities as a result of what seemed to him as our lack of faith in him- that we, his own parents, couldn’t trust his abilities. That’s why the independent trip to Birmingham was such a big success and restored some of his lost pride and confidence 16

in his own abilities. Since then, Chris has made a return journey to Basildon for a small shopping excursion, followed by Dad in the car and the two meeting in town once Dad had parked. This journey involved no large roads but ensured reasonable road safety. Two years ago, we had a holiday in Holland where Chris gained great confidence in riding 50miles in a week by bicycle. Last summer he went on a bike ride with Dad from Billericay to Matching Green to visit his grandparents, having gradually increased training each day, along the quiet roads of Billericay. Advice from the Michael Palin Centre has certainly widened Chris’s horizon and convinced us to keep the ball rolling! It has also given Chris much confidence so that he is empowered and not nearly as concerned about his stammer/stutter/ “disfluency”. He is starting to feel confident enough to over-ride the negatives that previously loomed in front of him. He has learned a few strategies too, to enable him to communicate more effectively – even though his lack of fluency is still quite noticeable. At present, our time at the


Conor’s big day Having just turned 18, Chris is undoubtedly emerging as a very determined and strong young man with a taste for adventure! I hasten to add that we are very proud of him and the extra “miles” he has journeyed – in his own circumstances, very independently!

The Michael Palin Centre The Michael Palin Centre for Stammering Children was officially opened in 1993 as a joint initiative between a charity called the Association for Research into Stammering in Childhood (ARSC) and the Camden & Islington Community Health Services NHS Trust. The official opening, which received wide press coverage, fulfilled a longstanding ambition to establish a centre of excellence in the UK for the treatment of children who stammer. Michael Palin agreed to the centre being named after him following his role in "A Fish Called Wanda", in which he portrayed a character called Ken who stammered. He based the role on his own father who suffered from stammering all his life. Michael's continued support and involvement has helped create a high profile for the Centre. Contact Details The Michael Palin Centre for Stammering Children Finsbury Health Centre, Pine Street London EC1R OLP

Conor proudly wears his Charlton Athletic shirt

Conor with Charlton striker Marcus Bent Conor takes to the field with the two teams

Opening hours 9 am to 5 pm, Monday to Friday Tel: 020 7530 4238 Fax: 020 7833 3842 website http://www.stammeringcentre.or g/s-The_Michael_Palin_Centre

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Donations . . . Donations . . . OVER THE past few months we have received some very generous donations from companies and individuals, for which we want to thank them on behalf of the members of Down Syndrome Extra 21. All the money we raise or receive as donations goes directly to our members. • P Cunningham £31 • Cheques received in memory of Mr Kennelly £100.50 • Rotary Club of Southend £50 • J Southern £45 • Mr & Mrs Garwood £50 • Peter Evans £150 • Braintree District Council £1938 • Selex, Basildon £500 • M & G Securities £1073-89 for disco equipment • David Adams £335.50 raised by running the London Marathon

SELEX Sensors and Airborne Systems with sites in Basildon, Portsmouth and Edinburgh, raised money for four different charities through various events – among others, three of their staff from the Basildon site completed the London Marathon. The company donated £ 500 to DS Extra 21, and Chairman Greg Stuttle accepted the cheque on behalf of our charity.

Chairman's Children's Party

by Liz Garwood

THIS YEAR we were lucky enough to be one of the chosen charities of the Chairman of Braintree District Council. At the end of his term of office, he gave a huge children's party instead of a civic reception. Each charity could invite 30 children and we all congregated at Towerlands in Braintree. The children from the Down Syndrome Extra21 group came from far and wide. There was face painting, clowns,

Jo Jingles, music and dancing, but above all SPACE!! After getting over initial shyness about the sheer size of the venue, all the children enjoyed rushing round, flitting in and out of the activities, or ignoring them altogether! Each child was given a hat and a box of tea time treats, and the parents well earned cups of tea. The Chairman raised £1938 for our group, for which we are very grateful 18


Donations

New guide helps Police support people with a learning disability ALL FRONTLINE police officers in England, Wales and Northern Ireland will receive a pocket guide on how to identify and help witnesses and victims with a learning disability.

Greg Stuttle receiving a cheque for £800.00 from Dennis Whitmore (Lodge Master) at Daws Heath Masonic Lodge. We were the Lodge Master's charity for the year.

Marathon Men

The guides are being introduced after a Home Office report showed that police officers had difficulty spotting people who could benefit from additional support. Less than half of vulnerable or intimidated witnesses were identified as having a learning disability by police officers. “The guide [tells] officers how to identify vulnerable and intimidated witnesses, what the law says and where they can get assistance,” said Richard Curen, director of learning disability charity Respond. “This will increase the chances of vulnerable people getting justice. It’s a small card that will have a big impact.” 170,000 guides are being issued to police officers as part of the scheme. The scheme is the result of a partnership between the Association of Chief Police Officers and three learning disability charities – VOICE UK, Respond and the Ann Craft Trust. For more information visit any of the following websites: www.respond.org.uk www.voiceuk.org.uk www.anncrafttrust.org

I COMPLETED the London marathon this year, not in a good time due the heat, so my finishing time was 4hrs 14mins. Up till 18 miles I felt really good but then unfortunately the heat got the better of me and I ended up walking for about four miles, several times next to Gordon Ramsey. I will be back to do another marathon at some stage. I raised nearly £350.00 for Extra 21, and £320 for the DSA. Although I had a bad day, my kids, Holly and Flynn, had a fantastic day and were hyper all the way home.

Dave Adams

• LEE Irwin from Southend on Sea also ran the Marathon this year and finished in 4 ½ hours. He raised approximately £2500, which will be split between Great Ormond Street Children’s Hospital and Down Syndrome Extra 21.

Government commits to making every disabled child matter THE GOVERNMENT will provide £340 million over the next three years to improve the lives of disabled children and their families and carers. This is the first time that disabled children have been a priority group when the Government’s spending plans have been drawn up. The new funding includes £280 million on short break services and £35 million on child care services. The Government has set a target for an extra 40,000 short breaks for severely disabled children. Mencap’s Breaking Point evidence was vital in securing this funding for short breaks. The Government’s financial commitment is a fantastic result for the Every Disabled Child Matters (EDCM) campaign. EDCM has been campaigning for short breaks for people with a learning disability and their families and supporters since September 2006. Dame Jo Williams DBE, chief executive of Mencap said, “This announcement means that by 2011 many more families will be getting the support they need. This is a huge step forward – but it also needs to be seen as a downpayment on the longer-term change required.” EDCM is a partnership between Mencap, Contact a Family, the Council for Disabled Children and Special Educational Consortium. For more information, please visit the Every Disabled Child Matters website at www.edcm.org.uk 19


Well done everyone This is Jack in his Maldon Sea Cadets best uniform ready for the Remembrance Parade last November, and taking a break on his recent expedition for his Duke of Edinburgh bronze. He loves being part of the Unit and has also taken part in a swimming gala, a 5-aside football tournament, and has been away on two multi-training weekends earning his Camp craft and Radio Corms badges. Jack has learnt the phonetic alphabet, but is the only Cadet who can sign it too! He also takes part in all the fund raising activities helping to run stalls and car park marshalling etc. Well done, Jack!

This is Charlotte on holiday in the Dominican Republic. The helpers get the horses to canter as they are going up hill, but Charlotte was content to go at a sedate walk!

In Spring, Anderley went on a fantastic trip to Disneyland Paris. The photos show her with her favourite, Mickey Mouse, and relaxing after a hard day’s play with Grandad. Anderley has just achieved her ASA level 1 in Swimming. This adds to her two certificates and rosettes for dancing.

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Walk for life Farleigh Hospice WELL DONE! ON 23RD MAY this year, we as a threesome, that is myself, my husband Brendan and Conor embarked on the 14 mile walk along the towpath from Maldon to Chelmsford to raise money for Farleigh Hospice in Chelmsford. Looking at the weather as we set out to the start point to catch the coach laid on to take the walkers to Maldon, it looked pretty grim with black clouds looming overhead. We had decided that Conor was quite able to do the 14 miles as we knew it would be flat and there was food and drink to be had at the half way mark at Paper Mill Lock! We started in good spirits and the rain was only slightly spitting then but as time went on the rain got harder and harder and the path muddier and muddier and quite slippery in places. In spite of this we cajoled Conor to carry on even when at the 12 mile stage he was offered a lift home by a friend of mine manning a drinks station. We finally passed the finishing line at about 5 p.m., very wet and soggy, but very proud of Conor who never gave up when the going got tough! Here is a picture of him holding his certificate.

ON WEDNESDAY 25th April Thomas took part in a show arranged by Footsteps, a club which he goes to twice a week. Everyone who took part did a song of their choice and Thomas sang one of his favourites, "You're Beautiful" by James Blunt. He thoroughly enjoyed himself, entertaining the audience with some jokes and a few slick moves in addition to his singing.

Ann Hickey

Music lovers’ trip ON 4th February a group of seven young music lovers (with some siblings, Mums and Dads and grandparents) went to Cambridge to a concert for children by the Cambridge Philharmonic Orchestra and Choir. We were treated to some familiar tunes from the Bugs Bunny Comic Strips, a very avantgarde version of Oranges and Lemons and the wellknown music from the Harry Potter films. Highlight of the afternoon was Paul Patterson’s musical version of Roald Dahl’s poetic version of Little Red Riding Hood. Children and adults alike very much enjoyed the show, some so much they couldn’t manage to sit but danced all the way through! 21


This is a photo of Lauren and her Mum at the Hydro Active 5k in Hyde Park last September. Margaret, Lauren’s Mum writes:

Lauren and I did the 5 km run together and are planning on doing it again on the 16th September 2007, this time with her school friends and their mums too. Lauren made her first solo holiday trip this year at Easter to Lourdes. She went with HCPT Group 84 and had a fantastic time and can't wait to go back again! Also in this neck of the woods the DSA held the 2nd "Danny Mardell Knockout Challenge" at West Ham United on 6th May. It was a fantastic day, 32 teams took part, two of which were ours. The "Eastenders" put a team in which went down very well: baby Grace aka "Janet" was there too looking absolutely gorgeous. As with last year though it's a shame there weren't more families present.

Our Colouring-in competition winners Thank you to everyone who sent in entries this year, the standard was very high. Once again our judge had a very tough time trying to decide who would be the winners in each age category but here we go . . . Winner in 2-4 age range is Evie Joy Begg from Hornchurch.

Winner in 5-10 age range is Louise Ginn from Chelmsford Winner in 11-16 age range is Patrick Irvine from Colchester. We hope you enjoy spending your W.H. Smiths vouchers and we look forward to seeing all the entries again next year.

100 Club Winners February 2007 1st J & C Beech 2nd Mr. L. Buck 3rd Mrs. T. Barnett

April 1st 2nd 3rd

2007 Mr. G. R. Willy Keith Holmes Mr. & Mrs. Rolph

March 2007 1st Carolyn McGuiness 2nd Alison Smith 3rd Mrs. J. Dickinson

May 1st 2nd 3rd

2007 Mr. D. Wrench James Hobbs Brian Jiggins

Congratulations to all the lucky winners

Have you remembered to renew your subscription yet? Why not set up a standing order - forms can be downloaded from www.extra21.org.uk 22

Creepy Crawlies by Mary Paton IN SPITE of a blistering hot day (in April!!), we had a cool Saturday afternoon at the soft play centre Creepy Crawlies in South Woodham Ferrers.

We had the venue all to ourselves, so the children could be as noisy and adventurous as they wanted. Ryan, Adam, George, Jessica, Daniel, Tom, Adam, Rebecca, Chloe, Orla, Grace and Molly had heaps of fun, each finding their own level of entertainment.

The parents meanwhile had a relaxing afternoon with tea and chatter. We hope to arrange something similar soon, so watch this space.


New Books GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives by Kathryn Lynard Soper (Editor)

VICTORIA'S DAY by Maria de Fatima Campos (Author)

This is an American book, published by Woodbine House and available from Amazon for £ 8.61 ISBN 978-1890627850

This new picture book uses photos of the author’s daughter Victoria on her day at the nursery. You can read a book, paint, bake biscuits and play games with Victoria and her friends as they show us exactly what they do at nursery.

Synopsis Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way. In this candid and poignant collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives. The contributors to this collection have diverse personalities and perspectives, and draw from a wide spectrum of ethnicity, world views, and religious beliefs. Some are parenting within a traditional family structure; some are not. Some never considered terminating their pregnancy; some struggled with the decision. Some were calm at the time of diagnosis; some were traumatised. Some write about their pregnancy and the months after giving birth; some reflect on years of experience with their child. Their diverse experiences point to a common truth: the life of a child with Down syndrome is something to celebrate. These women have something to say - not just to other mothers but to all of us.

The book is published by Frances Lincoln Children’s Books and can be ordered from Amazon for £ 7.79. ISBN 978-1-84507-571-2 The Down Syndrome Association’s Education Officer, Bob Blacks, writes about Victoria’s Day: This is a beautifully presented little book which will be welcome on the shelves and coffee tables of homes and schools. A charming observation of a child who "just happens to have Down's

TALES OF NORMANSFIELD – by Andy Merriman on shows, the killing of the Langdon Downs’ son, Everleigh, by brother Reginald and the miscreant behaviour of the ghost who still haunts the corridors of the old hospital. Personal accounts by patients, letters and photographs from the Langdon Down Trust archive, reminiscences from nurses, interviews with staff members and contributions from relatives provide a fascinating insight into life at Normansfield until its closure in 1997.

ON 21ST MARCH, the DSA launched a fantastic book written by Andy Merriman which charts the remarkable history of Normansfield hospital. “Tales of Normansfield” gives an in depth account into how the site (which is now occupied by the DSA in Teddington) gained an international reputation in its treatment of ‘idiots and imbeciles’ and is a testament to the extraordinary foresight of Langdon Down. The book also describes the role of John Langdon Down’s wife, Mary, in the administration of the hospital, her involvement in the exquisite theatre where staff and patients put

You can order a copy of TALES OF NORMANSFIELD for £9.99 plus p&p directly from National Office – all proceeds go to the DSA. 23


AGM 10th June 2007

Issue 14 / Summer 2007  

Newsletter from DS Extra 21

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