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Newsletter

Affiliated to the Down’s Syndrome Association

Issue 16 / Spring 2008

Sam Downing caption

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 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 - 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 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 . . . The Down Syndrome Extra 21 Annual General Meeting and Fun Day Sunday, 8th June at Essex Police Sports Pavilion, Chelmsford 11.30 for 12.00 until 4.00 p.m. Come and join us for a fantastic family day. There will be lots of things to keep children and adults entertained for the afternoon, such as bouncy castles, train rides and dance displays. Bring a picnic for you and your family to share - tea, coffee and soft drinks will be available free of charge and we’re hoping to have the bar open again. The AGM will start at 12.00 prompt in the Sports Pavilion, after which you will be free to enjoy the attractions. Please contact Deidre on 01277 365618 or email: downsyndromee21@aol.com to let us know if you are coming and if you need a map. We’re looking forward to seeing you there. The DS Extra 21 Committee

Family

O C S I D 08 ry 20 a u r Feb ll 26th arish Ha Y A RD dP SATU Shenfiel 30pm 7. at from

AN INVITATION TO THE WHOLE FAMILY to come and dance the night away at one of our popular discos. Music will be played on our own disco equipment and presented by some of our very own DJs (with a little help of a professional). Bring your own alcoholic drinks and nibbles – squash and water will be provided free of charge. A family ticket (for two adults and up to three children) costs £10, single tickets for those teenagers who prefer to come without Mum and Dad are £3.

For tickets please e mail Deidre on downsyndromee21@aol.com or phone 01277 365618. Please make all cheques payable to Down Syndrome Extra 21 and send to Deidre Clement, Birch Coppice, Stondon Road, Marden Ash, Ongar CM5 9BU.

Extra 21 Summer Garden Party on Saturday 7th September at Rob’s and Jeannie’s House in Rayleigh (bring your own picnic) There will be bouncy castles and train rides to keep the children entertained. For more information and directions e mail Rob on Rayleigh@extra21.org.uk for details. 3


OPERA

What’s on . . . What’s on . . .

A Day at the STANLEY HALL OPERA in Halstead have invited us again to watch the dress rehearsal of their latest production, Guiseppe Verdi’s Un Giorno di Regno (King for a Day) and to take part in a workshop beforehand to introduce us to the story and the music. The date for this exciting event is Wednesday 18th June. The workshop starts at 10.45 and lasts for 90 minutes. We then have 45 minutes for a picnic in the beautiful gardens of Stanley Hall before the dress rehearsal begins at 1.00 pm. There will be an interval, and the performance should be finished by 4.00 pm.

If you and your son/daughter would like to share this truly unique experience (free of charge!), get in touch with Sabine Nussey on 01245351161 or e mail downsyndromee21@AOL.com for more information and tickets.

This year we will be sharing the workshop in the morning with pupils from one of the local primary schools. Places are therefore limited to 15 teenagers plus 15 carers and will be allocated on a first come – first served basis. From past experience we feel that children should be 12 or older to be able to enjoy the opera. your child would like to go but you can’t go with them, let me know. There may be a possibility to accommodate them anyway.

You can find out more about Stanley Hall Opera and see photos of previous productions on their website www.stanleyhall.co.uk

EDUCATION INFORMATION DAYS For Professionals In conjunction with Essex and Barking and Dagenham LEA’ s we are organising two education information days on

Monday 6th October 2008 (Wickford) Tuesday 7th October 2008 (Barking) Both days are for professionals only, but we advise you to make sure your child’s school knows about the opportunities and reserves a place. The information days are led by the Downs Syndrome Education Consortium and the speakers are:

Sandy Alton, Advisory Teacher for children with Down’s syndrome/complex medical needs for Oxfordshire County Council.

Jane Beadman, Educational Psychologist for Devon LEA. Bob Black, Education Information Officer, Down’s Syndrome Association. Cecilie MacKinnon, Curriculum Development Officer for Down’s Syndrome Scotland providing training, advice and support to parents and schools. 4

D O W N ’ S SYNDROME ASSOCIATION For more information or to book a place schools can get in touch with Vivian Rozier (Essex) on 01268 632360 or Christine Simmons (Barking) on 0208 2704894.


Charity Ball

What’s on . . . What’s on . . . e ndrom y S n w Do 1 Extra 2

Sat 4th October 2008

Time: 7.15pm - 12.30am

Venue: The Rosewood Suite Stock Brook Country Club, Queens Park Avenue, Stock, Billericay

Our 5 piece live Band are called ‘DustyEggshed', so FOLLOWING the great success of last year’s Charity called because of the dusty egg shed they practice in! Ball, we once again warmly invite you to enjoy a They are a superb covers band with fabulous vocals Black Tie evening of good food, great company and playing classic rock/pop from the 1950’s to date. They superb live music for a very reasonable cost of £35 have a great set list with songs (The same price as last year; despite inflation!) The Charity The evening meal will be served at 8pm and from The Beatles, Robert Palmer, Bryan Adams, Dusty Springfield Ball will be hosted in the will comprise: to name a few. They are very charming Rosewood Suite Starter: kindly playing for minimal cost in which offers its own private A fan of melon served with a fresh fruit recognition of DSE21. If you bar and fireplace. coulis want to hear a taste of their We invite you to start the songs visit; www.myspace.com/ Main Course: evening by utilising our dustyeggshed. They are also Chicken Chasseur (Breast of chicken with personally booked happy to take requests. mushrooms tomatoes & white wine) OR photographer (Event Wild mushroom strudel We hope you have booked the Photography) who will be on date in your diaries and look hand from 7.15pm until 8pm Dessert: Chocolate profiteroles with forward to seeing both faces old to take single and group a hot chocolate sauce and new on the evening. To photographs in front of the Followed by Tea/Coffee & Mints secure your seats at the hottest fireplace. Prints will be and our own charity raffle event of the year, please available to purchase and complete the enclosed flyer and take home on the night. (A 7x return with a cheque payable to Down Syndrome 5 print will cost £10 of which the photographer will Extra 21 to committee member Sue Gallagher (address kindly donate £2 to DSE21) How often do you get a on the inside front cover). Tickets sell out fast so book decent photo of you both dressed up in your finery just the excuse you need to buy that new frock! Great early to avoid disappointment. gifts for relatives as well!

Down Syndrome Awareness Week 2nd - 8th June 2008 • Registration will be £5 and this is to cover the costs of all the printed materials, postage and T-shirts (a generic T-shirt will be produced for the event). • When participants register, they will let us know which walk they wish to take part in, and it is then that we will forward their details on to the relevant groups. • The DSA will also be holding a walk in Bushey Park, Teddington at 1pm on Sunday 1st June.

AWARENESS WEEK has historically been a time to shout about Down's syndrome and make everyone sit up and listen. As the UK's largest national charity covering all aspects of living with Down's syndrome, the Down Syndrome Association is calling for celebrations up and down the country in as many places as possible, bringing everyone together. To kick the week off in style they are asking people to join in The Big Step Forward – a three kilometer walk to raise money for the DSA and its affiliated groups. • The next steps… Everyone wishing to take part in a walk will have to register through the DSA’s National Office.

For information call Alexa on 0845 230 0372 or email: alexa.dizon@downs-syndrome.org.uk. 5


Donations

INTERNET donation You can now donate money to our charity over the internet. Just go on www.justgiving.com/extra21 and follow the instructions. You can make a single or set up monthly donations. All major credit/debit cards are accepted and 28% in Gift Aid will automatically be added if you're a UK taxpayer.

EXTRA 21 chairman Greg Stuttle was invited to the Charter Night celebration ( one year anniversary) of the Fairlop Lions Club in November last year. This organisation raise a tremendous amount of money for different charities and Down Syndrome Extra 21 were lucky enough to one of the recipients with a donation of £500. The photo shows Lions President Guy Jandoo presenting the cheque to Greg. Down Syndrome Extra 21 also received donations from: • Rayleigh & District Round Table £1000. • W O Watt & Partners - £300 • CAE Technology - £501 • Mr & Mrs Rhodes - £560 • Mr Patrick Cunningham - £30 • Brighton College - £245 • Mr & Mrs Garwood - £50 Thank you to everybody who continues to support our work. All the money raised for DS Extra 21 benefits directly our children and their families,

Marathon effort Simon Beresford, the first person with Down's Syndrome to have ever run the London Marathon in 2007 has repeated this amazing feat again this year. He completed the course in 5hours 44 mins, beating his performance last year by 30 minutes, and raised over £7,000 for the DSA. Well done! 6

Help fundraise for DSE21 with Yellow Moon: Yellow Moon is a unique shopping experience that offers great value products as well as raising funds for schools and charities. Over 18,000 schools and groups have collectively raised more than £2.35 million thanks to YELLOW MOON since its launch in 2001. Now you can help DSE21 The current website www.yellowmoon.org.uk or catalogue offers hundreds of wonderful products to keep children entertained and help their development. For every purchase you make from the website or catalogue, The DSE21 can receive up to 25% cash-back. All you need to do is either enter the Down syndrome Extra 21 source code on your order form, which is WDO01121 or look up the name of the charity ‘Down syndrome extra 21’ on the Yellow Moon website and any purchases you make will be rewarded to us. It’s that simple! Go on, give it a try - the kids will love the creative crafts and party gifts on offer!


Collection weekend at Waitrose, Southend AFTER THE immense success of last year’s collection weekend in the exit foyer of Waitrose Southend, where over £900 was raised, we have been fortunate enough to be invited back for another collection this year. On Saturday 28th June from 9am and Sunday 29th June from11am this year we will be setting up our information board, and offering information to customers of the store, who proved so generous last year. Waitrose Southend is located at Fossetts Way, just off Eastern Avenue. Once again we will be giving away Helium filled green and white Extra 21 balloons to all the children, and newsletters will be available to those that would like one. Like last year we are looking for volunteers to help. If you can spare some time on either day and would like to help man the event please contact Paul Smith on 01702 307299. The more of us there are the better.

What kind of a future?

about changes, which often took a long time for the young people concerned. This booklet is for young people and their families, friends and supporters to read and talk about together. It is written in plain English and there is an easy read summary. At the end of each section there are ideas for young people and information about some easy read websites and booklets. There is a final section on useful addresses and information for families. It is not easy to bring about lots of changes all at the same time! Person centred planning is a good place to start.

THE FOUNDATION For People With Learning Disabilities (FPLD) has just produced a booklet entitled 'What Kind Of Future? - Supporting Young People With Down's Syndrome To Lead Full Lives After They Leave School'

You can download the booklet free of charge at: http://www.fpld.org.uk/publications/?entryid=29215& EntryId5=29215&char=W

The FPLD received a legacy to improve the lives of people with Down’s syndrome. After looking at recent research and talking to people with Down’s syndrome, their family members and professionals they found that one of their greatest concerns was what happens to young people when they leave school. They may not have enough to do during the week and they may find it difficult to keep in touch with their friends. Others, though, do lead full lives. The Foundation talked to ten young people and their families to find out what had enabled them to bring about the changes they wanted. Some of those young people needed lots of support, others very little.

If you would like to order hard copies or make bulk orders, please complete an online order form or call the publications order line on 0207 803 1101.

Visual Timetable A NEW section of the DSA Education Support CDROM now offers free software for teachers and support staff, as well as interested parents. The first new item to be made available is our Visual Timetable which has already proved to be a really popular programme and allows you to make and print your own timetables. You can plan simple sequences or full weeks with the use of pictures. The simple sequences can also be used to reinforce behaviour plans and add rewards for completing tasks. For a free copy of the “Interactive Visual Timetable” software you can go to the link on the home page of the CD-ROM and download it. It can be freely copied for educational purposes or to use at home. You can also request a copy of the CD by calling the Down’s Syndrome Association on 0845 230 0372 or email Bob at educate@downs-syndrome.org.uk for more information.

The booklet is based on their stories and will hopefully empower other young people, their families and friends. It is not always easy to bring 7


Christmas fun for little ones

Our in-house catering team was in action again, preparing and presenting the food for the under 8 Christmas Party last December. Grace and Lucy, Chris and Daniel admiring their beautifully laid tables before 33 little ones came in and started on the destruction work. Lucky winner! Adam wins the first prize in our raffle, a bike, kindly donated by Rayleigh Round Table.

Rayleigh and District Round Table kindly sponsored both Christmas parties for our children and teenagers. Here is their Vice Chairman Tim Webb presenting a cheque for ÂŁ1000 to Greg Stuttle.

Another photo opportunity for the team, here with extra helper Sophia, after everything has been tidied up.

8


Let us introduce ourselves . . . Hi, we are the Hicks family, consisting of Dad Jon, Mum Nina, Joshua 3½, Ellis 1½ and Layla 3 months. JOSHUA attends a nursery in a mainstream school which he really enjoys, and has come on leaps and bounds since starting last September. We are currently deciding which school to send Joshua to this September when he is due to start in reception and be full time. We didn’t realise how important this moment can be, trying to make the right decision. Although we have a busy home and work life, we have recently decided to take a more active part in doing something to help support other families and carers. We A true England believe there should be a supporter friendly group where families and carers can meet and can help encourage, support, give advice and share their own experiences with each other, along with all of their light hearted moments.

Joshua and dad Jon

We have lots of support from friends and family and we feel the time is right for Joshua to be able to mix with other children with Down’s, and for his brother, and eventually his sister, to mix with other siblings who can relate to each others experiences. We hope you agree too! If you feel you could benefit from attending a group like this, then please take some time to complete our questionnaire which is included with this newsletter. All your comments will hopefully help us to form the right type of group to suit everybody who is interested in attending. Although we have no fixed venue at the moment we do have a short list, but our decision will depend on the responses we receive. We are aiming to have a group up and running by the summer.

Joshua’s and proud nan

Joshua’s first day at school

Please return completed questionnaires to; Mr J. Hicks 524 Becontree Avenue Dagenham Essex RM8 3HR Alternatively email jhicks@talktalk.net Thanks for your time

fact sheets . . fact sheets . . fact sheets . . fact sheets . . fact sheets . . fact THE DISABILITY LAW SERVICE has recently made the following fact sheets available via their website http://www.dls.org.uk/Advice/Factsheet/Factsheets.html

Support For Disabled Children With Special Educational Needs Employment: Employment Rights Under the DDA 1995

Community Care: An Introduction and Overview of Community Care Assessment and Services for Disabled Children English Social Services Complaint Procedure

Welfare Benefits: Disability Living Allowance Can I take my Benefits Abroad?

Education: Special Educational Needs - an Introduction

General: A Guide to Driving Licenses 9


Nicked for the day Visit to the Essex Police Museum - Friday 8th February 2008

We saw some of the uniforms policemen used to wear in the olden days.

We were allowed to try on various bits of uniform – the hats and helmets were really cool!

PC Luke Weeks in his bullet proof vest

The handcuffs were especially popular – some of our Mums’ were keen to borrow a pair!

… and being finger printed by Mum

Many thanks to Essex Police for inviting us, and to our guides …. and Doug for making it such a fun evening out for us. 10


Adam’s trip to meet Mickey and friends BRAINWAVE is a Children’s Charity which provides therapy for children with developmental delay due to brain injury, genetic conditions, chromosome abnormality, birth trauma and accident. The aim of the Charity is to help children improve their lives on a daily basis and to become as independent as possible.

We have just got back from a week at Disneyland Paris, which was a family present to celebrate Dads Birthday. Mum says he has finally hit the age where life begins so he has started by acting like a teenager again and going on all the scary rides with Dominic and me. Mum and Becky were far too scared to go on these so they stayed on the girly stuff.

Brainwave has a team of Regional Family Co-ordinators who support families all over the country. A number of the Team are based in the South East. Gerry Gould the Family Coordinator for Essex, London, Norfolk, Suffolk, Cambridgeshire and Middlesex explains.

We had a superb week; the weather was fantastic, the new rides were terrific and the parades fantastic. Adam xxx

‘Since being with BRAINWAVE I’ve met so many lovely families and shared in the excitement of seeing their children progress. Nothing can possible be better than seeing a child crawl, or walk, when you know their parents have been previously told that nothing could be done for them. Brainwave’s aim is to help every child we see become much more functional in their everyday life and to become as independent as they possibly can. Families in the South-East will visit our new Therapy Centre in Witham, Essex, where the therapy team will spend two days with the family talking with the parents and assessing their child’s potential. As BRAINWAVE aims at achieving progress in all areas of development, the therapy team will design a set of physical, cognitive, sensory and developmental exercises specifically suited for their child. Therapists then teach the parents how to carry out the exercises in their own home so they can take an active role in their child’s progress, which gives parents a much greater sense of control over their situation.

My new mate

The role of the Regional Family Co-ordinator is to support families locally, so we see them before they visit the South East Centre to explain what is involved, then afterwards we check to see they’re happy with how it’s all going and also keep them in close touch with the therapy team. We research lots of varied information which might be helpful to them and organize get-togethers and social events that the families can really enjoy. We also follow up any funding opportunities which may arise and give talks/ presentations about BRAINWAVE to other organizations and agencies. If you would like to know more about BRAINWAVE, please contact the Centre direct on 01376 503608 or visit our website:www.brainwave.org.uk Gerry Gould - Regional Family Co-ordinator can be contacted on 01268 561784 or 07725956014 11

Caption?????


Happy Birthda Birthdays January - April Best wishes to all the children and young adults who celebrated their birthday in January, February, March and April. January 1st Isabella Kurdziel (6) Harry Burnage (3) Michael Rhodes (1) 3rd Elizabeth Bibb (7) 12th Katie Mills (22) 13th Martha Lawrence (1) 15th Christopher Jenner (23) 18th Grace Estall (10) Hayley Greenwood (11) 20th Orla Gallagher (6) 25th Grace Hancox (3) 26th Patrick Irvine (17) February 1st Ellen Schultz (17) 3rd Maria Norburn (12) 5th Ian Morley (23) 6th Niamh Fewer (6) 8th Duncan Clement (15) Kimberley Webber (15) 9th Alex Jiggins (13) Craig Hitchings (7) 10th Hayley Evans (5) Amie Jade Willingale (7) 14th Daniel Mardell (13) 15th Angela Park (16) 18th Holly Bocking (7) 21st James Vincent (13) 26th Jennifer Sharpe (7) 27th Haydon Gannaway (5) 28th Christopher Routledge (19)

March 1st Chloe Morrison-Greet (14) 2nd Rebecca Clinch (8) Leon Kent (9) 6th Dominic Williams (3) 7th Eliot Barnett (13) 16th Freddie Mcconnell ( 9) 17th Ryan Kershaw (18) 18th Chloe Donovan (12) 24th Thomas Kemp (7) 27th Lorieya-Jean Newill (7) 28th Felicity Swift (12) Beth Corrigan (11) 30th Elizabeth Melder (18) April 1st 2nd 7th 9th 13th 18th 25th 26th

Keira McAllister (3) Charlotte Bissell (16) Harry Lush (8) Michael Truong (17) Benjamin Garwood (10) Ethan Patel (8) John Borakis (12) Christopher Kemp (26) Daniel Charles (16) 27th Isabella Costello (7) 29th Todd Andrews (1)

Happy birthday to Patrick who was 17 on January 26th. With love from all your family.

12

Rebecca was nine years old on 2nd March. Lots of love from Mummy, Daddy, Sophie and Toby

Happy Birthday to Ellen who was 17 on 1st February. Love from Mary, Pete, Saxon, all your family and friends.


ay Many happy returns to Alex, who was 13 on 9th February.

Hayley was 5 on 10th February. Many happy returns from all your family.

Happy birthday to our darling Todd. Love Mummy, Daddy and big sister Teagan Happy birthday, smiler! Lots of love from Mummy, Daddy and all your sisters.

Duncan celebrated his 15th birthday with a visit to the Essex Police Museum. Best wishes from your family and all your friends.

Many happy returns to Freddie, who was nine on March 16th

Happy Birthday Orla who was 6 on 20th January Chloe loves having you for her little sister and really enjoyed your swimming pool party. The inflatable slide was great fun and I’ve never seen so many adults use their kids as the excuse to give it a try themselves! 13


Boxing for charity CRN (Computer Reseller News) Fight Night ON 29TH MAY 2008, 16 contenders will fight it out in the ring at the Brewery, Chiswell Street to raise money for a host of worthy charities. The purpose of this event is to bring the industry together to raise money for charity and to have a great evening in the process. Between now and 29 May, the date of the final showdown, our brave fighters will be put through a rigorous training regime by expert trainer Mark "The Burf" Burford at his high-tech private gym, the Ring Boxing Club in Ewer Street. They will also be canvassing hard for their worthy charities. The evening will be accompanied by a champagne reception, three-course black tie dinner, charity auction and competitions – this is the Channel’s way of giving something back. Jamie “Gentleman Jim” Stewart to fight for the CAE cause On the 29th May CAE Sales Director Jamie Stewart will literally put his body on the line by taking part in the first IT Channel Fight Night. The charity event is being organised by CRN magazine and Jamie is supporting one of CAE’s nominated charities for 2008, Downs Syndrome Extra 21 (http://www.extra21.org.uk/) Jamie has had to go through a rigorous assessment just to be selected to fight although this is apparently just the beginning and there are many weeks of gruelling training ahead to reach the pinnacle of boxing perfection. Jamie commented “Having never so much as thrown anything qualifying as a punch in my life this is going to be an enormous challenge. However, I am watching a strict diet of Rocky, The Cinderella Man and Raging Bull so I will be mentally as well as physically prepared.”

Jamie Stewart Boxing name: Currently ‘Gentleman Jim’ (although that may change) Age: 37 Company: CAE Technology Services Job title: Sales Director Weight: 100Kgs Height: 176cm Charity you are representing and why: - Down Syndrome Extra 21. My friends’ daughter has Down’s and I would like to do all I can to raise both money and awareness. How much are you hoping to raise? - As much as I can. At least £6000 on the night with possibly another £1000 through the Justgiving website. I’ll keep pushing people to donate until we achieve at least that much, considering what I’m putting myself through! How you would describe your boxing style? - I think it’s probably too early to say. I wouldn’t say it is a boxing style as such but I’m very strong-willed and I never give up. Why you have entered CRN Fight Night as a contender? - I have been working hard for the past couple of years to lose a great deal of weight and get fit. I’ve entered quite a few sporting events, culminating in the London Triathlon last year but I think this will be my toughest challenge to date. Have you ever boxed before? No. Before this I had never thrown a punch in my life. What extra training have you been doing to achieve full fighting fitness? - I still run most mornings but I’ve also been doing some circuit training.

Have you picked a theme tune and if so, what is it and why? - Not as yet – currently I can’t get past the theme from Rocky! I will be giving that quite a bit of thought though. It will be something inspirational. Which professional boxer (any era) do you think you could take on? I really can’t think of any professional boxers that I would trouble at the moment. However, I was a big fan of the Super Middleweight battles of the nineties, especially Nigel Benn, and the boxer I would most love to knock out is Chris Eubank. Was Rocky too old for a comeback in Rocky Balboa? - No, he looked amazing. Besides, I strongly believe that age is just a number and anyone is capable of anything they put their mind to. What words have you got for your opponent? - I would like to wish him good luck and I’m sure that he will put up a good fight but he needs to be aware that I’m not going through all this to lose. I am determined to win.

More details about the evening can be found at www.crnfightnight.com and messages of encouragement can be sent to j.stewart@caeuk.com. 14


Ellen’s ‘Inspirational’ award

New publication A NEW publication at the website of 'Every Child Matters' entitled 'A Transition Guide For All Services – Key Information For Professionals About The Transition Process For Disabled Young People'. You can download the publication free of charge at: http://www.everychildmatters.go v.uk/_files/TransitionGuide.pdf

• YOU MAY also be interested in 'A Guide To Receiving Direct Payments From Your Local Council - A Route To Independent Living' (DoH Aug 2007). You can download the publication free of charge at: http://xrl.us/bb2xf 15


One parent’s guide to claiming DLA by Rob Eveleigh

Before you start (don’t worry if you’ve already started, a lot of this can be done retrospectively) 1. Keep a diary of any events or communications you have during the course of your claim. When you speak to anyone ask their name and tell them you are keeping a record of the date, time and content of the conversation. e.g. you could use the following headings: Date, Time, Name, From, Brief Description 2. Keep or create a list of appointments with health and educational specialists. e.g Date, Time, Location, Who With, Travelling Time, Cost of Travel. 3. Keep a list of clubs and activities you and your child attend to aid development through play, for example you might go to an activity group such as Tumble Tots, Jumping Beans, Jo Jingles, etc. This is all extra time and money you are spending to give your child the best chance of realising their full potential. So now you have your humungous form to complete, and it may look really terrifying. Don’t worry, don’t panic, just work through it bit by bit as you feel you can - but read this first! 4. Ask anyone involved with your child to provide a report to support your claim for DLA. Remind them to focus on the challenges your child will face. 5. If you have access to a computer write your answers on a separate sheet cross referenced to the Page No., Part No., Question and then your answer with your document’s own reference e.g. Insert 1.1 for the first answer, Insert 1.2 for your second answer etc. etc.

6. Write in each text box “See insert 1.1”, “See insert 1.2” etc. other records can be given similar references, e.g. List of support Network (anyone involved) - Insert 2

your own as “special”, after all they have something extra compared to other people. 12. Keep referring to differences between your child and what could be expected of a similar age ordinary child.

Diary of medical appointments - Insert 3

13. Write as much as you can.

Diary of Clubs and activities - Insert 4

14. Involve as many medical, educational and caring professionals as you can.

Report from Health Professional - Insert 5.1 (one for each report) Statement from someone who knows the child well - Insert 6.1 (etc as there may be more than one) 7. Be negative! You are not betraying your child’s achievements, it is just necessary to focus on what they need help with to get the most out of the system for your child’s benefit. Parents find this really difficult when in every other respect you are working from the positive angle. 8. The people reading the form have no specialist knowledge of the situation they have to assess, so write your answers as if they know nothing. 9. Be literal and repetitive, start each answer with “My child has Downs Syndrome, a genetic disorder that will affect them all through their life with characteristic weak muscle tone affecting gross and fine motor skills and associated physical delays, learning delays in particular …………..” 10. Try to find an answer for every question on the form. Surprisingly enough, if you look hard, as we did, there are very few questions that are not relevant in some way. 11. Refer to other children for comparison as “ordinary” and to

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15. Include as many attachments as you can. 16. Leave no scope for refusal. 17. Leave no doubt that a decision against you will be impossible to justify at appeal. 18. Write a list of enclosures including the form itself and the number of pages in each document. Put this on the top of the pile when you send it. 19. Focus on extra time, money, specialist knowledge and additional safety considerations required to look after and develop your child. 20. When asked how much of the time or how often the help is needed good answers are “all the time” and “constant”. 21. Keep copies of everything. Send the form and attachments by special delivery so their arrival can be guaranteed, is logged and the receipt details can be quoted if there is any dispute over their receipt. And finally ….

Be determined; it’s your child’s money to aid their development to their full potential. They are entitled to it.


Going to the show in

style

A RIDE in a limo all the way to London to see ‘The Lion King’, a lovely meal afterwards and Chauffeur service home again – that was Hannah’s big day out in November, all thanks to the charity ‘Kids in Need’.

Hannah about to get into her Limo for the day.

Inside – These seats are comfy!

A nice meal afterwards in Covent Garden.

Tired but happy with sister Sarah and Dad on the way home in the Limo. A lovely day and wonderful memory - thank you to Kids in Need.

The Limo drops us off outside The Lyceum Theatre for the matinee performance of The Lion King

New wwwebsite www.askability.org.uk is a is a fantastic, unique website designed specifically for disabled children and young people by Shared Care Solihull, one of many Children's Society projects working with the most marginalized children in society today. It was through listening to disabled children and young people the project worked with, that it became apparent that children and young people who communicate through picture and symbol were being excluded from everyday information that we all take for granted. From this the concept of the askability web site was conceived. Following research it was soon discovered that there were no websites, offering the information that children and young people wanted to access,

anywhere in the world. We were successful in securing Big Lottery Funding to build and develop this website, ensuring disabled children and young people were included in the design and content.

and feelings by posting statements onto a "graffiti wall".

You will see from the website that children and young people can access news, both local and national, sport, celebrity news, book and club reviews, jokes, riddles, general fun stuff, places to go and more importantly it offers children and young people who may have become isolated an opportunity to share their views

Feedback received to date shows that not only disabled children and young people who communicate through picture and symbol access the site, but also children and young people who are dyslexic, speak another language, or prefer to access information in a more simplified way.

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Post Ca rd

Greetings from . . .

Matthew at the O2 Spice Girls concert

. . . our far eastern cruise

Where are you going on holiday this summer? Send a postcard to: The Editor, S. Nussey, 118b Moulsham Street, Chelmsford, CM2 0JW, and it will be published in one of the next newsletters 18


GPorset eCtaridngs from . . .

REBECCA holding a plaque presented to her at the Colchester Phoenix Swimming Club. She won the Achiever’s Award for Best Personal Achievement (Improvers). She was very proud, as are her family.

Luke, Mum Linda and baby Annabelle All is well here, we've adjusted to life 'up North' lol. Luke is very happy and is a wonderful big brother to Annabelle. He's ever so gentle and loving. She's a lovely healthy baby and the birth The Gateway Dancers went really well. Luke misses his dancing, he's about to join Shed MK (Chickenshed theatre company) and I'm sure he's going to enjoy that. 19


Going on Holidays? MANY people will be heading off on their holidays soon, often flying to their destinations. We have had a few cases recently where cabin crew have objected to children with Down's syndrome over the age of 2 sitting on a parent's lap for take off and landing. They have said that as the child is over 2 they must sit in their own seat, belted up. This is not possible with some children, and in fact a couple of the cases we have dealt with, the children have been very small making the seat belt redundant anyway. Cabin Crews do not seem to realise that there is an exemption (see below) that allows you to have your child with Down's syndrome on your lap.

ORS4 No.658 - Seat Restraint - Handicapped Persons - General Exemption from Article 54(6)(a) of the Air Navigation Order 2005 regarding the seat restraints for handicapped persons - 28 September 2007 (latest update). You can download the exemption at: http://www.caa.co.uk/docs/33/ORS4_658.pdf

Transition Outside the Box: Our Vote, Our Voice factsheet 'Contact A Family' has produced a useful factsheet entitled 'Preparing For Adult Life And Transition Information For Families England & Wales'. You can download this factsheet free of charge (along with many others) at: www.cafamily.org.uk/transition FOR THE last year, Outside the Box Development Support has been working with people who have learning difficulties to produce an information pack about voting. The pack has now launched online at: www.otbds.org/vote. It includes sections about choosing things and changing things, finding out who is in charge, voting to change things and how to keep telling people about what you want to change. There is a glossary, lots of useful contact information and a set of posters. Outside the box has been working closely with groups all over Scotland to make the pack. The pack can be used in lots of different ways and is designed to be used by people with learning difficulties to train other people with learning difficulties. Groups who helped produce it have already gone on to tell others about voting. One group said, “We have gone with other members of the group to tell people in our area about voting. We have been part of explaining things and asking questions.� The pack can be used by people all over the UK and covers local councils, the Scottish Parliament, National Assembly for Wales, Northern Ireland Assembly, UK Parliament, London Assembly and European Parliament. 20


February

DIS CO

FOR THE first time we used our own disco equipment to provide the music for the teenage disco in February. Several of the boys were very keen to have a go, and Howard, our DJ for the evening, very patiently explained all the various bits and pieces to them. With his help they kept their audience entertained throughout the night and got them dancing well past the official finishing time. Just one thing: a bit less smoke next time, please, so that some more photos come out! Studying the playlists and listening to the choices

Howard explains the equipment to his eage r pupils

“My heart will go on�

Calling all budding DJs For those who are interested in learning how to use the disco equipment, Howard has agreed to run some sessions for us. Please ring Sabine on 01245 351161 for further details.

Nice glasses!

Glamour Girls

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Fun for all the family

at Adventure Island, Southend–on–Sea LAST YEAR’S wristband offer proved very popular and helped to raise over £260 for DSE21. We have therefore decided to offer the wristbands yet again to family members, friends and colleagues at a greatly discounted price whilst helping to raise additional funds for the charity. We are selling BIG ADVENTURE and MINI/JNR wrists bands for just £11 and £7.00 each (If bought at the park these would cost up to £22 and £15 each!) These wristbands make ideal presents or ‘store cupboard’ surprises to pull out and use throughout the year. You can buy as many as you wish for friends & family for just £11 or £7.00 We do aim to keep a supply available up until the summer – so top ups can be ordered if you run out! • The Big Adventure wristband lets riders over 1.2 metres tall experience all 32 wristband rides. • The mini wristband lets riders up to 1 metre tall experience 13 rides, whilst the junior wristband lets riders between 1 mtr & 1.2 mtrs tall experience all the mini rides & an additional 9 rides. But don’t worry – the decision as to which wrist band is appropriate (mini or junior) is not made until the day you go and the child’s height is checked. An accompanying adult rides free with a child wearing a mini/jnr wristband on the mini/jnr rides. • Each wristband voucher is valid until 31st December 2008 • Each wristband voucher is valid for peak & off peak times • The great thing about Adventure Island is if you don’t ride you don’t pay unlike Chessington, Alton Tower etc. so you only need buy wristbands for those that want to go on the rides.

How about letting us share in your great time by sending us photo’s of your visit! 22

100 Club Winners October 2007 1st Mr A. Payne 2nd Mr. D, Wrench 3rd Ms Kim Leadbeater November 2007 1st Mr & Mrs R. Owens 2nd Mr A. Pike 3rd Mr & Mrs C. Jenner December 2007 1st Mr J. Corrigan 2nd Ms E. McVeigh 3rd Mr P. Schultz January 2008 1st Mr C. Coughlan 2nd Mr D. Wrench 3rd Mr A. D. Clement Christmas Draw Mrs J. Clement February 2008 1st Mr & Mrs Jenner 2nd Eileen McVeigh 3rd Alison Smith March 2008 1st Mr & Mrs Rolph 2nd Mr & Mrs Harvey 3rd Mr A. Pike April 1st 2nd 3rd

2008 Mr Coleman Teresa Bauman Alison Smith

May 1st 2nd 3rd

2008 Chris Goodey Eileen McVeigh Mr Coleman


Free Bus Travel FROM 1 APRIL 2008, eligible users will get free off-peak travel on local buses anywhere in England. You are eligible if you are aged 60 or over or are 'eligible disabled'. Children and adults with Down Syndrome are already entitled to the current statutory minimum concession of free local bus travel in your area from 9.30 am to 11.00 pm on Monday to Friday and at any time during weekends and public holidays and this will continue. From 1 April 2008 you will also get free local bus travel in all other areas of England during these off-peak times.

Blue Badge map service THE ONLINE Blue Badge map service, which makes it much easier for disabled people to find places to park, has now been significantly improved. The map on the Directgov website, produced by the Office for Disability Issues, was first launched in July 2006 on www.direct.gov.uk . It was the first of its kind originally covering 64 cities and large towns. A further 37 have now been added, more are still being rolled out, and by the end of April the total will reach 119.

Local authorities may offer extra benefits to their residents as part of their concessionary scheme - for example, free or reduced off-peak tram or rail travel, or free bus travel before 9.30 am Monday to Friday. However, these additional benefits will normally only be available to that region's own residents. So if you visit an area that offers additional services, you probably won't be entitled to them – make sure you check first with the relevant authority. You can find a list of England's concessionary pass providers at: http://www.dft.gov.uk/pgr/region al/buses/concessionary/concession marketingcoms/nationalbuspassto olkit/listoftcas

Don’t forget to visit our own website on

www.extra 21.org.uk 23

Users can search by postcode or town/area name for designated Blue Badge parking bays, parking bays that fall on red routes in London as well as accessible stations, toilets and petrol stations. Blue Badge holders can also find out more about rules for street parking, including time restrictions and any special notices


Our younger members say hello


Issue 16 / Spring 2008