Newsletter
Affiliated to the Down’s Syndrome Association
Issue 18 / Winter 2009
The Belles and Beaus of the Ball
Visit our website on www.extra21.org.uk 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
Local support groups and contacts 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
Member - John Talbot 3 Risebridge Road, Gidea Park. Tel: 01708 730594
Havering and Brentwood Elaine Catmull Tel: 01708 765232
Members - Nina & John Hicks 524, Becontree Avenue, Dagenham, Essex RM8 3HR Tel: 07863 119601
Newham, East London Samantha Russell Tel: 020 74741735
Member - Sue Gallagher 49 Harold Gardens, Wickford, Essex, SS11 7EP. Tel: 01268 570520
Redbridge Evette Saffron Tel: 020 8505 4258
Member - Mary Paton 53 Rushdene Road, Brentwood, Essex, CM15 9ET. Tel: 01277 231065
Saffron Walden Jane Flood Tel: 01799 599451
Member - Paula Blakey 4, Glanmead, Shenfield, Essex CM15 8ER Tel: 01277 211625
Southend Alison & Paul Smith Tel: 01702 307299
DISCLAIMER Contributors to this newsletter express their own opinions. These do not necessarily reflect those of the Editor or of Down Syndrome Extra21.
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
PARENTS’ HOTLINE 01277 365618 email: downsyndromee21@aol.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 PO Box 4260 Dunstable LU6 2ZT Website: www.downs-heart.downsnet.org Email: penny@dhg.org.uk
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
What’s on . . . What’s on . . . DSE21 invite you to jump aboard the Mamma Mia roller coaster and enjoy the AbbaGirls on stage at Pope John Paul II Hall in Rayleigh this summer. 200 seats are available to see this group who have toured throughout Europe with their show playing all your favourite Abba tunes. Tickets are available at £5 each for adults: children and adult members with Down Syndrome get in for free. To book tickets please contact Sue on 01268570520.' ABBAGIRLS consists of Kim Graham and Gilda Kristian, two of the UK's top vocalists. These two very talented girls together with top quality backing tracks bring the unmistakable sounds and harmonies of ABBA live to any venue. Kim Graham (Frida) conceived the idea of an Abba duo in 1995. Kim, a big Abba fan, has always been a professional vocalist. She started her career touring with various bands in the UK & Europe. Kim has worked with the top musical directors and bands in the world. She also cruised the world on various liners including cabaret on Cunard’s QE2. Gilda Kristian (Agnetha) has been performing since the age of 4! At school age she started her training with Lansford Roberts of "The Nice Opera Co." and "The Lee Strasburge Theatre Inst" London. Gilda has worked the Top theatres in the world, most recently with "The Rat pack" In London’s West End. She has
also performed in numerous top productions as lead singer, notably at the “Talk of London". An amazing dancer, Gilda has cruised all the main liners working with the top names in show biz. Gilda is one of the UK's top singer /dancers and also a Mensa member! Brains as well as beauty!
Family Fun Day at Adventure Island, Southend-on-Sea Sunday April 26th 2009 Dare to ride the ‘Rage?’ Lose your stomach on the ‘Drop n’ Smile?’ or face the ‘Pharaoh’s Fury?’ Why not come and join us and have fun at Adventure Island on Sunday 26th April 2009. We thought it would be great for friends and families to get together and mingle whilst enjoying the rides Adventure Island has to offer. The park opens at 11 am and has hours of amusement fun and eateries to suite both the young and not so bold! For this one special day DSE21 are offering tickets at a hugely subsidised price, so put the date in your diary now – booking forms will be sent out closer to the date.
are valid until December 2009 for half the price that you would have to pay at the park itself. To order these special offer wristbands, fill in the form in this newsletter and send it back to Sue Gallagher.
If you can’t make April 26th, or would like to visit Adventure Island again at another time, we are able to sell you wristbands that 3
What’s on . . . What’s on . . . Diary Dates ONCE AGAIN DSE21 invite you to take part in our 6 Hour Endurance Kart Race to be held at Buckmore Park in Kent. The 2007 & 2008 events both managed to raise magnificent amounts in excess of £16,000, money which has gone towards organizing more information days, speech therapy assessments & workshops over the year. This year’s event is taking place on Saturday the 9th May and kart costs have remained the same at £350 each. Anybody wishing to book a place, or for more details, please contact Paul on 01702 307299.
T U O SOLD DSA Education Support Disc for Schools
6th - 9th April - Fire Break 4 Day Course 26th April - Family Day at Peter Pan Adventure Island, Southend 9th May - Go karting at Buckmore Park 7th June - AGM at Essex Police Social Club, Chelmsford 17th June - Stanley Hall Opera Workshop and Performance 5th July - AbbaGirls at Pope John Paul II Hall in Brentwood 18th July - Teenage Disco 27th September - Family Day at Colchester Zoo (t.b.c.) 10th October - Charity Ball at La Quinta Restaurant in Benfleet Booking forms for most of these events will be sent out nearer the time, but please do put the dates in your diary already. Places may be limited for some events, so if you want to make sure, you can also e mail your request to downsyndromee21@aol.com
Bullying – How to deal with it
THE DOWN Syndrome Association’s award winning Education Support Packs for Schools are now available on CD-ROM. It contains a guide to obtaining a statement of special educational needs and detailed practical information on including pupils in mainstream schools at primary and secondary level. The CD-ROM can be ordered directly from the Down Syndrome Association online shop at www.downs-syndrome.org.uk/shop for £5.00 plus p&p.
CONTACT A FAMILY has joined forces with Parentline Plus to produce a new guide for parents of children with disabilities. The guide is packed full of information and tips around spotting the signs of bullying, action and strategies you can take as a parent, and your child's rights. The guide was developed from a range of stories and experiences told to us by parents of children with disabilities affected by bullying. Their tips and stories are included throughout the guide.
Additional resources, publications and links to support the Education Support Disc for Schools can be found on www.supportdisc.co.uk. .This area contains only the additional material that was published or submitted after the production of the original support disc, so to have access to the full range of resources and publications please purchase the original disc.
If you would like a copy of the guide, please call Contact a Family's freephone helpline on Tel: 0808 808 3555. You can also download it free of charge from their website on http://www.cafamily.org.uk/bullying.pdf 4
Are you Up for Reading? UP FOR READING is a fun and educational sponsored reading event for schools, nurseries, families and support groups. It can be easily integrated within everyday reading activities. It simply involves encouraging children to read or listen to books for just a few minutes every day for one week and asking family
and friends to sponsor them. Children can read or listen to books in a group or by themselves, at school or at home. Up for Reading is a great way to encourage reading and to help raise important funds to support the work of Down Syndrome Education International, a leading charity
See and Learn Language and Reading SEE AND Learn Language and Reading is a programme of activities designed to help children with Down syndrome learn to talk and read. Designed by Downsed International, it provides step-by-step guidance through graded activities that are designed to develop spoken language and reading skills. Building on typical strengths in visual learning, it emphasises the visual presentation of language through reading. The programme will also be beneficial for other learners suited to visual learning approaches. See and Learn Language and Reading promotes vocabulary and grammar development. The programme offers activities that can be practised regularly at home in fun and engaging ways. The materials are also suitable for small group and classroom use. See and Learn Language and Reading is provided free of charge online by Down Syndrome Education International. Anyone may download and use the programme without charge from their website on www.see-andlearn.org/language-reading The See and Learn Language and Reading programme consists of five steps grouped into the three stages. Each stage contains a step with a focus on vocabulary development. The two later stages also contain a step with a focus on teaching reading to develop grammar, but they are not yet available online. Step 1 - See and Learn Word Pictures includes guidance materials for this step, full instructions for the activities, picture cards, baseboards and record sheets. It is designed for children who are at the first stage of learning language. It contains activities to help children learn 60 common first words using pictures. This step also prepares children for learning to read by developing their visual skills through matching activities that they will use during later stages Step 2 - See and Learn First Written Words teaches children to read 16 written words, and understand combinations of two 'key' words in written phrases. When children have a vocabulary of more than 50 words, they begin to combine words together, so this step also uses reading to support children in understanding and using combinations of two 'key' words. This step is designed to be used at the same time as See and Learn More Word Pictures. Step 3 - See and Learn More Word Pictures uses pictures to introduce a further 55 words that are common in children's early vocabularies. This step uses pictures to introduce a further 55 words that are common in children's early vocabularies. This step is designed to be used at the same time as See and Learn First Written Words. 5
that works to improve education for young people with Down syndrome around the world. Local Down syndrome support organisations can also benefit. If you take part in Up for Reading 2009, you or your school/nursery have the chance to win prizes including: • a visit to your school by Anthony Horowitz • an original illustration by Nick Sharratt • a visit to your school by Justin Somper • Stormbreaker goodies signed by actor Damian Lewis • Val Tyler as a virtual writer in residence for one term • a visit to your school by Steve Weatherill • a selection of signed Jeremy Strong books • books signed by other Up for Reading supporters Up for Reading supporters include Lucy Cousins, Michael Morpurgo, Anthony Horowitz, Jeremy Strong, Nick Sharratt, Justin Somper, and many more...
Get involved Schools, nurseries, Down syndrome support groups and individual families and children can easily take part in Up for Reading at any time before 31st July 2009. For more information and to order a fundraising pack go to www.upfor-reading.org/get-involved or email: enquiries@up-forreading.org
DONATIONS WE WOULD like to thank the following individuals and companies for their donations. All the money raised goes directly to support the members of Down Syndrome Extra 21. • • • • • • • • • • •
Brighton College Adidas Women's 5Km Challenge Lodge of Success, Chelmsford Mr & Mrs F Garwood Ms K Hookins Mr & Mrs D Priest W O Watt & Partners Mr & Mrs J Clinch Stuart Ginn Peter Crisp CAE Technology Services Limited (in lieu of Christmas Cards)
£511 £5 £100 £50 £30 £30 £150 £800 £1359 £10 £1000
Colchester Barn Dance FRIENDS, friends of friends and anyone we could drag along came to support us, and what a fun night we all had! The band “Itchy Feet” were excellent as always, and Elaine, the caller, soon had everybody up dancing; even those who had vowed only to support the event and not dance were soon busy promenading their partners! Everyone generously bought lots of raffle tickets and we managed to raise £800 for Extra 21.
On yer bike!
A big thank you to everyone who sold tickets, provided raffle prizes, and also to those people who had us crying with laughter at their lack of coordination and not knowing their left hand from their right (although that may have been down to the amount of wine they had consumed!)
PARENT Member Stuart Ginn got on his bike and raised over £2500 by taking part in the London to Brighton Bike Ride last summer. As he requested, half the money raised was given to Dance 21, a dance group his daughter Louise is involved with, leaving Extra 21 with an impressive £1359. What an achievement!
Julie Clinch (Parent member, Colchester)
Snap! • an invitation to an exciting prize winners' party in London • photo or film will be shown at a London art gallery over the summer of 2009 and may also be shown in the Snap! tour across the UK • photo or film will be shown on the Mencap website
SNAP! is Mencap's annual photo and story competition. It offers a unique insight into what it is like to have a learning disability through the eyes of those closest to it. The 2009 competition is now open for entries - and this year, for the first time, you can also enter short films to Snap!
If you would like to take part in Snap! 2009, please read the competition rules and find out how to enter. The closing date for entries is 9 March 2009.
Entries have to be • photos or films of people with a learning disability • photos or films taken or filmed by someone with a learning disability Each entry should also have a story with it about why the photo was taken or the film made. There are lots of prizes on offer this year, including: • a top of the range digital or video camera from Fujifilm
For more information about the 2009 competition, please contact: The Snap! team Telephone: 020 7696 5524 Email: snap@mencap.org.uk 6
Charity Ball 2008 THE ROSEWOOD Suite at Stock Brook Country Club in Billericay was packed for the Down Syndrome Extra 21 annual charity ball. Over 100 people had come to sample a lovely three course meal and dance the night away to music provided –free of charge!- by the group ‘Dusty Eggshed’. For the first time, several of our young people with Down Syndrome came to the ball and had a table of their own. As soon as the meal was finished and the music began they were up on the dance floor, not leaving it until the band played their final song at 12.30 in the night. In fact, their infectious enthusiasm got us ‘oldies’ up and dancing a lot earlier and longer than usual, and it made the band offer their services again for next year!
At the start of the evening, a professional photographer took group photos, with a percentage going to our charity, and the traditional raffle gave us some welcome time to catch our breath again after all the dancing. Altogether, the ball raised nearly £1,700 or DSExtra 21 - thank you to everyone who supported us. The ball next year will take place on Saturday 10th October at La Quinta Restaurant in Benfleet, with music again provided by ‘Dusty Eggshed’ - hope to see you there.
7
New strategy found wanting ON JANUARY 19th, the Department of Health published the long-awaited report Valuing People Now: A New Three-Year Strategy for People with Learning Disabilities. There is a positive commitment to working with people with learning disabilities and with families and carers, and a strong emphasis on leadership. The new strategy recognises that better information is needed about the numbers and needs of people with a learning disability and aims to address the needs of groups who are often excluded, including those with more complex needs, those whose behaviour challenges services and those from black and minority ethnic communities. Valuing People Now comes with a delivery plan, which sets priorities
for the next year. These include improving healthcare, increasing the range of housing options for people with learning disabilities and their families, and increasing employment opportunities for people with learning disabilities. Greater responsibilities are also placed on learning disability partnership boards. A separate employment strategy been promised for "early 2009". However, despite evidence that the
Bond Holidays for people with special needs
number of people with learning disabilities has been underestimated, there is no substantial additional funding to support the implementation of Valuing People Now. While welcoming the report generally, Mencap’s chief executive, Mark Goldring, expressed serious reservations about the reality. “Hardpressed and under-pressure local authorities, working with partnership boards without any statutory powers, are going to find it hard to deliver the vision set out in ‘Valuing People Now' “, he said.
The Easy Picture Guide to
Banking
BOND Holidays offer a range of holidays for people with disabilities and special needs in and around Blackpool. The Bond Hotel, Blackpool, is an awardwinning specialist hotel, set just off Blackpool's South Shore, which has been catering for guests with disabilities and special needs for nearly 20 years. Like its sister hotel in St Anne’s, the hotel is a family business, and whichever hotel you choose, you're guaranteed great service, great value and a great time. To check where the hotels are, what’s on offer and current prices go to their website www.bondhotel.co.uk
www.making-money-easier.info THIS WEBSITE is part of a bigger project which is designed to help people with a learning disability understand more about money and banking. This Guide has been put together to help them choose both a Bank and a Bank Account that are right for them. It has been written to be easy to follow and understand, with lots of pictures to help make things clearer. As well as all the pictures, some words are coloured and, if you move your mouse over them or click on them, you can learn more. The information is also available in a series of booklets, which can be downloaded from the website.
MISSION STATEMENT Here at Bond Hotels we provide specialist accommodation, transportation and equipment for the disabled visitor. We are committed to raising the general public's awareness of the difficulties on a day-to-day basis. We tirelessly campaign throughout the country in order to raise funds and highlight our mission, which is to provide affordable, comfortable quality holidays for people living with disability, so that they can feel safe in the knowledge that their every need will be catered for. 8
Annual Mencap Cathedral Service Thomas leading Dance 21 THE UNUSUAL sound of music from High School Musical and Abba reverberating round Chelmsford Cathedral meant that the time for Mencap’s annual Service of Thanksgiving had come again. For the ninth year in succession, groups from all over Essex had come to perform their singing, acting and dance routine. The service was compered by Liz Mullen from BBC Essex and watched by many local dignitaries, Pom-poms out for High School Musical among them a pearly queen and king from London’s East end. Chelmsford Mencap President Peter Turrall announced that he is stepping down from organising the event. However, new organisers have been found and the 10th Cathedral Service will go ahead on Sunday 4th October 2009. Chelmsford Gateway Club dancers with the Pink Ladies . . . . and the T-Birds
It’s behind you - oh no it’s not! IT WAS great to see so many of our families and friends at the Cliffs Pavilion, Westcliff on Sea on Saturday 3rd January to enjoy another excellent pantomime. And what a brilliant afternoon we had! The ever-popular Chuckle Brothers were the stars of the show. Paul and Barry Elliott, as Wishee and Washee got a cheer whenever they appeared, especially when they came out with their legendary catchphrase – To Me, To You. Aladdin was advertised as ‘Southend’s most magical panto ever’ and how true that was. The special effects they had this year
were fantastic. Everyone in the audience was provided with glasses to be worn at certain times throughout the show so the 3D effects could be fully appreciated and judging by the oohs, aahs and sometimes shrieks, they certainly were. Jewels sparkling in the cave, spiders and other creatures appearing right before your eyes – all brought to life by clever technology. Wow! The 2009/10 pantomime will be Peter Pan - always a popular show - so send off for your tickets as soon as you see them advertised in the newsletter to avoid disappointment. See you there. 9
Happy Birthday Best wishes to all the children and young adults who celebrated their birthday in October, November, December, January and February. October 1st Sam Downing (15) 10th Oliver Humphrey (1) 11th Sam Lincoln (9) Elena Turner-Thorne (12) 17th Francesca Goff (7) 18th Hannah Pike (15) Natalie Herod (9) Emily Mckeeve (7) Louise Ginn (10) 19th Rafael Benjamin (17) 20th Ella Spicer (8) 21st Ryan Crane (5) 22nd Oliver Buck (12) 25th Anisa Afar (7) 26th Gareth Bettis (18) 28th Lucy Rowlings (17) 29th Katie Beech (23) November 3rd Abigail Emerson (11) 4th Sam Packer (17) 6th Raphe Rhodes (10) 7th Lauryn Hart (8), Lucy Owens (20) 9th Molly Paton (7) 18th Jonathon Buck (8) 20th Jake Kauter (6) 22nd Grace Wiley (21) 25th Ben Jones (20) 26th Rayaan Mirza (7) 27th Jamie Jeyes (8) 28th Luke Weeks (14) Victoria Rowden (20) 29th Jordan Andre (19) 30th Conor Macdonald (12)
January contd 3rd Elizabeth Bibb (8) 12th Katie Mills (23) 13th Martha Lawrence (2) 15th Christopher Jenner (24) 18th Grace Estall (11) Hayley Greenwood (12) 20th Orla Gallagher (7) 25th Grace Hancox (4) 26th Patrick Irvine (18) February 1st Ellen Schultz (18) 3rd Maria Norburn (13) 5th Ian Morley (24) 6th Niamh Fewer (7) 8th Duncan Clement(16) Kimberley Webber (16) 9th Alex Jiggins (14) Craig Hitchings (8) 10th Hayley Evans (6) Amie Jade Willingale (8) 14th Daniel Mardell (14) 15th Angela Park (17) 18th Holly Bocking (8) 21st James Vincent (14) 26th Jennifer Sharpe (8) 27th Haydon Gannaway (6) 28th Christopher Routledge (20)
Happy 15th birthday Sam. Love mum, Amy, and Pete xxxx
To our darling Ellie. Wishing you a very happy birthday. Love mum, dad and Amy xxxx
December 13th Holly Adams (8) 13th Evie Begg (4) 17th Kirsty McDonald (20) 18th Ellie Goldstein (7) 19th Jack Darker (6) Thomas Cunningham (12 Lara Read (6) 26th Cloe Mildon (15) January 1st Isabella Kurdziel (7) Harry Burnage (4) Michael Rhodes (2) Happy 5th birthday Ryan. Lots of love mummy and daddy 10
Many happy returns to Martha, who was 2 on 13th January
Bashir celebrated his 15th birthday on the 12th of Jan. Many happy returns from all his family.
Happy 16th birthday to Duncan – here he is on a snowy walk with mum, dad, brother Peter and the dog.
Here is Gareth enjoying his 18th birthday party with his friends, Andrew and Mark.
Happy birthday to Grace, who celebrated her 11th birthday on January 18th. With love from all her family and friends. Mummy, Chloe and Graham wish Orla a very happy 7th birthday. Here you are getting dressed up for the Southend Carnival. You had a great time on the carnival float, waving at everyone and dancing and singing. We are very proud of you. Love you lots xxx
"Chris says goodbye to his teenage years! Congratulations on reaching 20 years! Wishing you 'many very happy returns of the day'! - Have a great birthday & celebrations! You are now a fine young man and we are all very proud of you. Every good wish for a bright future ahead of you. With much love from your family. Love from Mum, Dad & Claire xxx"
Happy 7th birthday, Molly. All our love from mummy, daddy and your big sisters 11
Happy 15th birthday to Hannah. With love from Dad, Dom, Sarah and all your family and friends
Ellen celebrated her 18th birthday on February 1st in style. Many happy returns from Mary, Pete and all your family and friends,
Lost in transition NEW research released by Dimensions warns that the housing requirements of young people with learning disabilities are often overlooked or missed off care assessments altogether, despite the commitment to the personalisation agenda.
more difficult for them to move out of home and live independently. On the back of the study, Dimensions is calling for all those involved in the transition process to ensure housing considerations are central to care assessments. Schools should include person-centred planning as early as possible. The organisation says care providers and local authorities must make sure their employees have adequate training and the right information so housing needs, both current and for the future, are reviewed regularly and as early as possible. Families too, must engage in triggering the assessment process for their child as early as possible.
For the study, called 'A Home of My Own', young people between the ages of 18 and 30, along with their families and support staff, were interviewed about their experiences relating to the transition from the family home into their own accommodation. Dimensions are the UK's second largest provider of support services for people with learning difficulties and/or autism. The charity hopes its findings will provide practical help and advice for young people and their families on planning independent living, as well as recommendations for care providers and local authorities. The research found the key to achieving successful independent living is to plan early. Thinking ahead to get housing considerations through the community care assessment gate is essential and families should push for this at the transition planning review in year nine, when students are 13 years-old.
Transitions Development Manager at Dimensions, Kate Jackson, says: "It is important to understand the difference between a 'house' and a 'home' – a distinction that all the young people we interviewed made. Finding a 'home' takes into account our families, friends, and interests. Yet our research demonstrates that professionals often assume that a house without these considerations is sufficient for a young person with a learning disability.
The research findings also highlight that the same bodies that promote independent living for young people with learning disabilities are often the ones that make it impossible for this process to run smoothly. The work and benefits trap is just one example of this highlighted in the study. Young people may find they are worse off in employment than living on benefits, which caps their ability to engage in meaningful activity and often makes it
"Getting a house is not the starting point in achieving independent living. Getting the right kind of support established first is the most important thing. Mistakenly, getting a house often becomes the final measure of success." Find out more about A Home of My Own: http://www.dimensions-uk.org/research
In case of emergency WE ALL carry our mobile phones with names & numbers stored in the memory. If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know who to call. Yes, there are hundreds of numbers stored but which one is the contact person in case of an emergency?
paramedic who found that when he went to the scenes of accidents there were always mobile phones with patients but they didn't know which number to call. He therefore thought that it would be a good idea if there was a nationally recognised name for this purpose.
Hence this 'ICE' (In Case of Emergency) Campaign. In an emergency situation, Emergency Service personnel and hospital staff would be able to quickly contact the right person by simply dialling the number you have stored as 'ICE'. For more than one contact name simply enter ICE1, ICE2 and ICE3 etc
All you need to do is store the number of a contact person or persons who should be contacted during emergency under the name 'ICE' (In Case of Emergency). The idea was thought up by a 12
Sexuality and Down Syndrome - A NEW BOOK TEACHING Children with Down Syndrome About Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven is a recently published book in the Topics in Down Syndrome Series from Woodbine House. Parents of children with Down syndrome and other intellectual disabilities are accustomed to paying close attention to their child's physical, cognitive, and emotional development. This proactive approach should also include their child's sexual development, which for many parents may not seem as obvious or urgent, especially to those with young children. Drawing on her unique background as both a sexual educator and mother of a child with Down syndrome, the author blends factual information and practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak comfortably about these sometimes difficult subjects. In an easy-to-read, nonclinical style, the book covers relevant issues and concerns for children of all ages, such as: labelling & explaining private body parts; identifying & expressing emotions; respecting personal space; teaching self-care & hygiene; understanding norms of privacy; understanding gender identity; and, showing appropriate levels of affection. It also covers
later issues that affect teenagers and young adults, including: anticipating and understanding puberty; dealing with periods, bras for girls; experiencing erections, wet dreams for boys; relating to the opposite sex; sharing parental values about sexuality; explaining sexual relationships; preventing sexual abuse; and, understanding how Down syndrome affects puberty & fertility rates. Each chapter highlights important points with key messages, teaching activities, parental pauses, and
anecdotes, all of which prompt readers to stop and consider concepts or values associated with a particular topic. The final chapter covers the special concerns of parents who are now teaching teenaged or adult children about sexuality for the first time. It concludes with extensive appendices containing invaluable teaching materials and illustrations of body parts and functions. The book can be ordered from Amazon for £ 15.99
Supporting People with Learning Disabilities - Working Together most about them and the support they need.
THE HOME Farm Trust, a national charity providing long term support for people with learning disabilities and their families, has published a comprehensive guide how to support people with a learning disability in hospital.
• Health staff should not rely on relatives or paid support staff of people with learning disabilities to provide care whilst they are in hospital without considering their needs and supporting them appropriately.
Working Together: Easy steps to improving how people with a learning disability are supported when in hospital can be downloaded from the hft website at www.hft.org.uk/p/4/121/Working_Together.html These guidelines are for hospitals, families and paid support staff based on the principles that: •Like everyone else, people with learning disabilities should get the help they need from health services, though this may mean that reasonable adjustments need to be made. • Health professionals should listen more to the families and support staff of people with learning disabilities because they usually know
For more information please contact Crispin.hebron@hft.org.uk 13
Christmas Time -
AS IN previous years, we organised two events for our young people: a disco for those over 12, and a traditional Christmas party for the little ones. At the disco at Grove Tennis Club in Chelmsford the dance floor was practically heaving from start to finish. Only when the teenagers were tucking into their Dominos Pizzas did the noise level drop slightly. The culinary delights of the night were rounded off with a chocolate fondue, which proved to be very popular with Mums and Dads, too! A special thanks to all the grown ups who stayed and helped dish out food and clear up afterwards.
he from t hotos p e r o page) ay (m ight aw on the back n e h t e g r Dancin nage disco a tee
Fun for the little ones too
THE LITTLE ONES had their own Christmas party with music, a bouncy castle and lots of food, prepared once more by our very own inhouse catering team. After polishing off the again very popular chocolate fondue, it was time to meet Father Christmas in his grotto, who was handing out presents and posing for photos with sometimes slightly reluctant partygoers. Lucy arranging the food on platters The Catering Team
Grace, Daniel and Lucy - our work is done
Duncan in charge of laying the tables
Grace making sandwiches 14
Party Time
Wills and Trusts THE CHARITY Cerebra (www.cerebra.org.uk) for brain injured children and young people helps parents set up a will and discretionary trust to prepare for their child’ s future. After a successful pilot scheme in 2007, Cerebra have continued the Wills and Trust Voucher Scheme into 2009. The voucher is worth up to £350 towards the cost of a solicitor or professional will writing service preparing a will and discretionary trust to make provision for your child’s future. Your child must have a brainrelated condition (Down Syndrome does qualify), be aged 16 or under and be receiving the Middle or High Rate of the Care Component of Disability Living Allowance (DLA). You must include with your application: 1. A copy of your child's DLA award. 2. A copy of a letter from a professional that confirms your child's condition. If approved, you will have to have an appointment with a solicitor within 3 months. If you are interested in an application or more information, please email alex@cerebra.org.uk or telephone 0800 328 1159.
Show your support
SHOW your support for Down Syndrome Extra 21 with these key rings/trolley coins and lapel badges. The trolley coins are £1 each, the badges 50p, and they will be for sale at all our future events. If you would like to put in a bulk order, contact Paul Smith on 01702 307299 to discuss postage. 15
News from . . . Daniel
Daniel being invested
IN DECEMBER 2008 we were delighted to see our youngest son Daniel complete another milestone in his life when he was invested into the 6th Rochford Beavers. Our other son Thomas really enjoyed going to Beavers and has since moved onto Cubs. We feel that this is a really good activity for Daniel as he has made lots of friends there and really enjoys the games and activities they take part in. In the build up to Halloween night the Beavers had a fun evening doing bobbing for apples and trying to eat the doughnut off a string with their hands behind their backs. They also did a bit of dancing and here is Daniel with his friend Lucy. He has already got four badges one of which is the ‘Hikes Away 1 badge’ for which he had to take part in a 1.5km walk through the woods. He did stop a couple of times and was the last one to Daniel and Lucy finish but for him it was a great achievement and we could see it took a tremendous amount of effort from him to complete. He has also obtained his ‘First Aid 1 badge’. Recently the beavers went to the local St. Johns Ambulance HQ and were given a tour of the building and learnt about the basics of First Aid. They were also allowed to examine the ambulances they had there. All the leaders were supportive of Daniel joining the group and everyone has made him feel very welcome. We couldn’t have asked for more and it is great to see him having so much fun with his friends and we look forward to him getting more badges and moving up to the Cubs like his big brother. Greg & Samantha Stuttle
Hannah
HANNAH and her sister Sarah had a great time in the snow, enjoying their unexpected two days off school. Here they are building a snowman in their back garden. 16
News from . . . Rebecca
2008 HAS been a very successful year for Rebecca. She was made a Sixer at Brownies, achieved her Proficiency Award 1 in Gymnastics and received a medal for completing all eight awards. Most recently, she achieved her 11th Kyu in Karate, which was probably her proudest moment! Well done say her equally proud parents and siblings, Sophie and Toby.
Bashir Daniel THIS IS Daniel collecting his GCSE certificates at the Award Ceremony at Hylands School. Daniel passed his exams in Food Technology and English Language as well as a double award in Science, giving him four GCSEs altogether. Well done! He started Hylands Sixth Form in September and enjoys being a Sixth Former and all the associated privileges (no uniform, going out to the shops with his friends at lunchtime) very much. After school he takes the bus into Chelmsford and walks home from town by himself.
“SINCE CHRISTMAS Bashir had been asking for a yellow car”, his parents write. “So for his birthday, I made him a birthday cake in the shape of a yellow car and we bought him big battery operated play car. But Bashir wasn’t satisfied: “ It’ s not real”, he said. “I want a big one to drive on the road” We could not believe it ...our kids can be so amazing ....we could not stop laughing!”
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News from . . . Ellen
WE HAD a long weekend of celebrations, starting on Friday 30th Jan with Ellen’s party at Chelmsford City Football Club, on Saturday we had some family friends around and on Sunday we went to see Cirque de Glace, the Russian Ice-skating stars at Southend and finished the day off with a meal in Leighon-Sea. Thank you to everyEllen arrives to party 'in style' in one the Trotter Van involved on these days, we have all given Ellen 3 days to remember for the rest of her life – we have never seen her so happy before – it even beat Time to blow out those candles waking up on a Christmas morning. This is what Ellen wants to say about her special weekend: “On Friday, after school, I went to Sarah’s house and had my hair done all curly, it was pretty. Then I went home and put my purple dress on, my shoes and make-up. I thought I was having a limo drive me to the party but a yellow van arrived – Trotters Independent Traders – I was so excited as Only Fools and Horses is one of my favourites. The ride was bumpy and Pete was stuck in the back on Marlene’s and Del Boy’s coats. It was great fun driving around. Mary and Eileen met us at the Football Club. Mary took lots of photos. Ellen and the DJ 'Crazy Martin' before the party starts
The party was great and the DJ, Crazy Martin made us all laugh with his different faces and costumes. I danced a lot with my friends to all my favourite music – Abba, Sugar Babes, Beatles and High School Musical. On Saturday I opened most of my presents – lots of jewellery and smellies. I love my bangle and ring which I got from some of my friends. On Sunday it was starting to snow. We went to Southend to see Cirque de Glace, the Russian ice-skaters. I liked the acrobatics best but it was all good. Afterwards, we went for an Italian meal in Leigh-on-Sea and guess what? - there was a hair shop across the road called Del Boys!!!!!!! Let’s groove on down
I loved my birthday weekend.” Ellen Schultz 18
By Mary Schultz
The Russian Ice Stars at Cliffs Pavillion, Southend on Sunday 1st February 2009 AS A SPECIAL treat for Dance 21 dance group, in appreciation of all their hard work and fantastic performances over the last year, 60 of us celebrated in style by seeing the world famous Russian Ice Stars at Cliffs Pavillion. We did not know what to expect . . . would it be like a pantomime or just a series of breathtaking iceskating steps? Nothing could prepare us for the spectacular show of technical manoeuvres, acrobatics, superb choreography and heart-stopping entertainment. Julian Deplidge, Technical Director, has included in this performance as a world first: • A Russian Bar Act, not normally performed over ice but a sprung dance floor (it was amazing!)
• A large scale fire sculpture which was ignited mid-air above a theatre stage. There were 33 performers including 3 times British Champion John Hamer, world record holder Svetlana Murzak performing her Cloud Swing Act, the world’s tallest professional ice skater fresh from the Russian Olympic team, and Andrey Chuvilyaev who stands over 6ft 8 in in his bare feet. The story centred around the evolution of the earth, our greatest inventions, like the wheel, our most memorable occasions, like walking on the moon and what is all in our minds at the moment - global warming but what can we do to alleviate the problem? The show ended on a very positive note with a 19th century quote from a North American Indian Chief: THIS WE KNOW: The Earth does not belong to Man, Man belongs to the earth. All things are connected Like the blood that unites us all. Man did not weave the web of life; He is merely a strand in it. Whatever he does to the web, He does to himself. Chief Seattle 1854
100 Club Winners October 1st Mr D Wrench 2nd Mrs D Allix 3rd Mr D Wrench
November 1st Mr & Mrs Owens 2nd Ms S Knight 3rd Mr & Mrs Blakey
From the smiles on the children’s faces, it was clear they all had a great time and I think that Riverside Ice Rink will get some more customers in the near future!!
December 1st Ms C McGuinness 2nd Mr & Mrs J Talbot 3rd Ms S Knight
January 1st Mr P Crisp 2nd Mr K Holmes 3rd Mr & Mrs Rolph
Winners of the Christmas Draw Mr & Mrs Beech
February 1st Mr & Mrs Rolph 2nd Mr & Mrs Owens 3rd Mr & Mrs Jenner
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More Christmas fun