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Affiliated to the Down’s Syndrome Association Reg Charity No:1094957 E-mail: downsyndromee21@aol.com Patrons: Nik Kershaw, Cllr Joe Pike

Newsletter

Issue 12 / Autumn 2006

In this issue . . . This year’s AGM . . P4

Birthdays . . P12

New committee members . . P7

Our day at the opera . . P16

Go-kart special . . P10

Emily’s photo story. . P18

. . . PLUS MANY MORE ARTICLES AND PHOTOS

. . and all the DISCO pics


Branch Committee Members

Chairperson - Greg Stuttle The Foundry, 16 Pemberton Field, South Fambridge, Rochford, Essex SS4 3BF. Tel: 01702 200320 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 Fundraising - Mary Schultz 92 Longstomps Avenue, Chelmsford, Essex CM2 9LB. Tel: 01245 259742 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 - Brian Jiggins "Karensa", 28 The Promenade, Maylandsea, Essex CM3 6AR. Tel: 01621 740033 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 - Paul Smith 84 Silverdale Avenue, Westcliff-on-Sea, SS0 9BD. Tel: 01702 307299 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

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

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 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

Local support groups and contacts

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

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.

The Down’s Heart Group

2

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


What’s on . .What’s on . .What’s on . .

Dates for your Diary 7th October DS Extra 21 Charity Ball at Chelmsford Cricket Ground

11th November Pre-Christmas Disco for 12+ year olds Shenfield Parish Hall

10th December Christmas Party for under 12s at Shenfield Parish Hall

6th January 2007 Pantomine at Cliff’s Pavilion, Soouthend

March 2007 Information Day on health issues (exact date and venue t.b.c.)

Ball

Cover photo: Ellen Schultz and Hannah Pike taken by Peter Evans

Christmas is coming Christmas

may seem a long time away, but the festive season will be here quicker than you think! This year we have decided to have two parties, one for the older age group, 12 and above, and one for the younger ones up to age 12. The teenage party will be a Disco on Saturday, 11th November at Shenfield Parish Hall from 7.15 - 9.30. As it is quite a few weeks before Christmas, Father Christmas won’t be putting in an appearance, but there will be some special food and drink to mark the occasion. Again, bring a friend along if you like - tickets are £ 4.00 per person.

The under 12s will have a traditional Christmas Party (with Father Christmas!) on Sunday 10th December from 3.30 - 5.30 at Shenfield Parish Hall. There will be a finger buffet followed and entertainment provided by DNA Kids. Any child with Down Syndrome, provided you are a member of Down Syndrome Extra 21, can have a free place and siblings will be charged at £4.00 each. All children must be accompanied by an adult. As there is a limit on the number of children allowed, places will be allocated on a first come first served basis. To avoid disappointment for your kids, complete and return the enclosed form as soon as possible.

Dick Whittington COME WITH US TO SEE

DOWN SYNDROME EXTRA 21

This year, our annual charity ball will be held at Essex County Cricket Club, New Writtle Street, Chelmsford, CM2 0PG on Saturday, 7th October, 7pm to 12.30am in the Marquee. The tickets will be the same as previous years, £45 each and we will be dancing to a new band for us, ‘Nuff Sed’. Plenty of parking on site. If you haven’t yet booked your tickets and sent back your food choices, please do so as soon as possible. We would love to see some new faces at this event and can guarantee that you will enjoy yourselves.

Starring Paul Nicholas and Cannon & Ball

AT THE CLIFFS PAVILION, SOUTHEND-ON-SEA ON SATURDAY 6TH JAN 2007 at 2.15 pm We have reserved 100 seats for the above pantomime and are offering them to you at the subsidised price of £10 per parent/carer, £5 per child with DS and siblings. (Normal price £20.50 per adult, £15.50 per child) If you want to bring along anyone else the price will be £16.50 per adult, £12.50 per child. Pantomimes at the Cliffs Pavilion are always good fun, so make sure you get your ticket order in as soon as possible. 3


Annual General Meeting

Thomas and Ellen

FOR THIS year’s AGM we went back to the Essex Police Sports Ground and Pavilion in Chelmsford, where our charity was officially launched exactly three years ago. It is a fantastic venue for us, with a big field for the children to run around in, a lovely patio with furniture to relax and a big and cool room to have the official meeting in.

Dance 21. . . . .

Just like three years ago, the weather was perfect - a lovely warm and sunny day, and the entertainment provided after the official part had been got out of the way was outstanding!

Alex and Daniel in action

Three lovely young ladies

First of all we enjoyed several dance numbers by Dance 21, who were then joined by the Gateway Club for a rendition of that all time favourite, Grease Lighting. The Essex Steam Railway Association ran some of their engines along a 200 feet track at the side of the field, and young and old could be seen queuing up for their tickets all afternoon long. Two bouncy castles kept the children busy until two Essex police dog handlers came in their shiny patrol cars with their dogs, who were firm favourites for the rest of the afternoon. The kids also made the most of the opportunity to sit in the cars and pretend to be on a high speed chase – or maybe to escape from the sun and heat outside for a while! Later, parent member Tony Williams set up his keyboard and entertained us with a selection of popular 4

. . . . . and Gateway Club are lining up

All aboard!

The true stars of the afternoon . . .


. . . yet another success Committee tunes and songs, inspiring some of the younger members to fill in for him when he took a well deserved break! Everybody agreed that we had a wonderful day, and we would like to thank Essex Police, especially Christian Robinson from the Essex Police Sports Association and the two dog handlers who gave up their Sunday afternoon, very much for making it possible.

Thank you very much for coming

The master . . . . . . . . . . and his apprentice Two members of the Gateway Club

NEWS

TWO OF our current committee members had to stand down this year, either due to work commitments or because they are moving out of the area. We would like to thank Andrew Pike and Karen Lush very much for all the support they have given to the charity over the years. However, we have managed to fill the vacancies with two other volunteers from our membership, and I’m very pleased to welcome Ann Irvine and Rob Eveleigh onto the committee. After five years as Chairperson of the charity – two of them while we were still the North East Thames Branch – I have finally decided to step down and make room for someone else at the top. I’m very happy to say that Greg Stuttle has agreed to take over from me, I’m sure he’ll be an excellent chairman. For the first year I will stay on as Vice-chair to ease him into his new responsibilities, and I will also continue to edit the newsletter. I really enjoyed the challenges over the last five years, especially our successful transformation into Down Syndrome Extra 21. It has been very rewarding to see the charity grow over the past three years and see that we are actually making a real difference to people. At this point I’d like to thank my fellow committee members, whose hard work and support have made my job so satisfying.

Sabine Nussey

Have you remembered to renew your subscription?

. . . . true stars indeed 5


Chairman’s Report

I

N THE three years since the launch, our charity has gone from strength to strength. Our membership now stands at 185 families, and 242 schools and other professionals are receiving regular information via our newsletter. We have had several requests for materials by schools, and for support at Down Syndrome Information days in schools. Last autumn, we organised three very successful Information Days in collaboration with two LEAs in our area, Essex and Barking & Dagenham, one for parents, the other two for teaching professionals. The days were run by the experts from the Down Syndrome Education Consortium, and the response we had from amongst the 200 plus delegates was excellent. The LEA have expressed their desire to collaborate on Info Days like those on a regular basis, maybe every two years.

We have always enjoyed good support for our social events – apart from the Race Night planned for October, which we had to cancel due to lack of interest. Last year we had a Barn Dance and the traditional children’s Christmas Party. In January 22 families went to see Snow White at Cliffs Pavillion in Southend, and we have already put an option on tickets for this year’s pantomime. We are trying to organise more activities for our teenagers, and as a start we had a very successful Valentine Disco in February. The next one is already planned for 22nd July, and we’ll have another one in November, because we feel the teenagers are a bit too old for our traditional Christmas Party. Last June a group of 6 teenagers with their Mums went to the dress rehearsal of Verdi’s opera Falstaff at Stanley Hall in Halsted, this year 15 plus 15 carers are going and also taking part in a workshop before. We are also exploring possibilities for sporting events and a drama/art course. Other events for all our members planned for later this year are the Ball and the children’s Christmas Party. Members are continuing to support our fund raising efforts through donations and participation in our ever popular go-kart event, which again this year was very successful. Several people collected sponsor money by taking part in charity runs, and we have just heard that the Mayor of Braintree has chosen us as one of his charities for the year, at the suggestion of our patron, Councillor Joe Pike. As you have seen from the accounts, our bank balance remains healthy, despite some rather large expenses last year. This is due to the ongoing commitment of our fundraising team and the support of our members. If you have thought of any other activities we could organise or causes you feel we should support, please come and talk to one of the committee members. However, if we do extra things, we will need more active members, either on the committee or just taking over the organisation of one particular activity. Please think about it, and if you feel you could spare some time, maybe to organise some more activities for teenagers like bowling, football etc. please come and talk to us.

Sabine Nussey

New chairman . . . Greg Stuttle I AM pleased to be writing to you as the new Chairman of Down Syndrome Extra21. For those of you who do not know, I am married to Samantha and we have two sons, Thomas, who will be six this Christmas, and Daniel, who was four in June. I first joined the committee in 2003 when my youngest son Daniel, who has Down Syndrome, was a year old. That was about the time where I felt our life had settled down a bit, as like a lot of the rest of you we spent what seemed to be quite a lot of Daniel’s first year in and out of hospital. I have enjoyed being on the committee and playing a part in the organization of some of our events. But I don’t think I realized how much work was involved with the running of our Charity, and just how much time and effort the founder committee members had put into the Charity. Fortunately for me they have all agreed to stay on the committee and continue their hard work and for this I am very grateful. I am hoping to use my experience in sales to increase awareness of our Charity with local businesses. I hope to be able to interest them in helping to support our work, or maybe get them to enter a team in our annual fund raising kart race held each May. If anyone knows of any companies that might be interested in supporting our Charity I would be pleased to receive their details. I would like to thank Sabine Nussey on behalf of Down Syndrome Extra21 for all her hard work as Chairman for the last three years. I would like to personally thank her for agreeing to be Vice Chairman for my first year, in order to help show me the ropes. I look forward to meeting you at our future events, but if you would like to contact me in the mean time please email downsyndromee21@aol.com.

Greg Stuttle 6


New committee members . . . New committee members . . . New committee members . . .

Rob Eveleigh Ann Irvine HI, I’M Rob. My Wife Jeannie and I have a 6 year old boy called Mark who has Downs Syndrome. I work for HM Revenue & Customs, mainly on IT service customer help lines for both departmental and public users, but more recently on shift work configuring, running and fixing failures on electronic data processing in one of their data centres. I have also just started a small model engineering business as part of my hobby, building miniature railway engines for people to ride behind. I am involved in the South East Essex Railway Society who supplied the track and carriages at the AGM. I am also an active member of The Rochford Live Steam Group (another committee). I run a classic 1970 Morris Minor van that is only 3 years younger than me! We have experience of applying successfully for Disability Living allowance and being awarded the highest rate twice so far. We went through the educational statement process and, just days before a legal appeal to challenge the level of support being offered was due to take place, we were offered a full time one to one support for Mark in a mainstream school. We went to evening classes to learn some Makaton sign language and we use that with Mark. Mark has had some operations; grommets fitted to minimise the effects of glue ear, tonsils and adenoids removed to combat sleep apnoea and eating problems, and open heart surgery. We have always worked hard to include Mark in social activities; going to

MY NAME is Bridget Ann Irvine. I was born in Co. Galway, Ireland a long time ago. I went to the local primary school and to boarding school in the Convent of Mercy, Co. Mayo. I trained as a psychiatric nurse, came to England as a post graduate nurse, and worked in The King George Hospital, Ilford. I met my husband, Michael two years previously, which was one of the reasons for deserting my native land. We married in the summer of 1969. We lived over twenty five years in the Middle East and India. I opened and ran a playgroup in Saudi Arabia and later on in Qatar. After my son Patrick was born in 1991 I did my Masters degree in

Education with the University of Sheffield. I attended an international workshop in Jerusalem given by Professor Feuerstein whilst I was doing my dissertation. We returned to the UK in 1999 and moved from Romford to Colchester. I became a full time parent to Patrick. I am Parent Governor in his school. I work with the homeless on Tuesday in Colchester.

Sue Gallagher MY NAME is Sue Gallagher, I am 38 years old and married to Peter. I am currently a full time mum to Chloe who is 6 and Orla who will be 5 in January. Orla was diagnosed with Downs Syndrome a few hours after she was born. At the beginning there was a lot of shock, grief, anger and upset, but now we wouldn’t be without Orla who is a cheeky little girl with bundles of fun. She is due to start mainstream school this September and I am sure will have a great time. I joined the committee last year and decided to stay on again at the AGM. I believe the provision of support for each other, be it emotional, informational or in terms of shared experiences is immeasurable. We are the experts in respect of our children and sharing this knowledge for the benefit of all of them, through our Association, means we can promote all that is positive. Our children have a lot to offer to society and I am keen to see they are all included! cafes and restaurants, Jumping Beans gym group, Jo Jingles music group, Southend toy library including day trips, Special Sitters holiday group, HOPS holiday play schemes, Mushroom Theatre Company since Christmas, including his first starring role in their most recent show and we are 7

hoping he will enjoy starting in Beavers the pre-Scout group in September. I look forward very much to sharing some of these experiences and helping in any way I can as one of your new committee members.


By Mary Schultz

Update on SINCE OUR highlights last year, when we performed at Sadler’s Wells Theatre and the National DSA AGM, 2006 has so far proved very busy for us also.

Dance 21

Dance 21 dance group were invited to the launch of Gateway Kidz Club, opened by the Deputy Mayor and Mayoress of Chelmsford and had a great time dancing with the adults from the Gateway Dance Team. We have also danced at two local School fetes, Woodlands and Larkrise Junior where we are very fortunate to have free use of the school hall for our Thursday lessons – thank you to the Head teacher, Mr. Evans.

At the launch of Gateway Kidz Club evenings of dance. Both nights were packed out and, judging from the comments of several people in the audience, a great success. You have to be there to soak up the atmosphere and see for yourself the obvious enjoyment our children get from dancing. We also have the DVD to prove it which shows an excellent coverage of all the dances performed on the night – a wide variety from GCSE examination pieces, Show soundtracks through to Hip Hop. Many thanks go to Down Syndrome Extra 21 who continue to support us, to Entertaining the audience at Woodlands Jean, our dance teacher also invited us to dance at her Footworks Medal Presentation Evening, where many of the children also received certificates and medals from the dancing exams they had sat earlier in the year. How proud they all were. Our largest events were Two Evenings of Dance at Boswells School in Chelmsford. Dance 21 and Chelmsford Mencap Gateway Club, both taught by Jean Hunter, performed with the Boswells School Adults and Students to provide two fantastic

Athletic end to Run DMC, the hiphop dance-off! Jean and Cheryl Noble for making this all possible and to the Head teacher at Boswells, David Crowe, for allowing us to perform in his school. Finally, many thanks go to our group of dancers who put 110% effort into their dancing and for showing the general public exactly what they can achieve – they are all stars in their own right. “We go Together” - the grand finale 8


Many minds one heart by Doris Mountford

April 1st 2nd 3rd

2006 Elissa Alvarez Kim Leadbeater James Hobbs

May 1st 2nd 3rd

2006 Mr D.G. Wrench Marie Little Peter Schultz

June 1st 2nd 3rd

2006 John Corrigan Mr D.G. Wrench Mr Patel

July 1st 2nd 3rd

MY DAUGHTER Maria aged 16 (nearly17) has been privileged to be a member of the Stage Right Youth Theatre for the past three years and this July had her chance to take part in their showcase “Many minds one heart” which was performed before a paying audience at the Civic theatre Chelmsford on 23rd July 2006. The show was written by the youngsters themselves and they directed, costumed and choreographed the show, not to mention doing all of the backstage work and controlling the lighting and technical effects throughout the show, all with help from the theatre staff and other experts. The scenery was all the more impressive by some of it (the tree) being designed by a real artist, Sue Lupasco Washington, mother of one of our cast, who also played a major part in making it. Their play-lets and sequences unfolded a history of Chelmsford from cave-man days to an imagined future, taking in themes of witchcraft, crime, war and peace, the monarchy and us and them. Some parts were comic (by intention) and others intensely moving.

2006 C. Goodey Cathie & John Talbot Marie Little

Maria had various roles in the show : she danced in the opening movement sequence and several other sequences, she was in the crowd scenes for one playlet, but her personal triumph was as the lead part in a playlet sequence which she had co written. This told the tale of a real life family tragedy, the death of a child, (played by her namesake, Maria) and of how this led to our Maria being named after her. The show was very well received and friends and family felt very proud of their little thespians!

August 2006 1st Mr & Mrs MacKay 2nd Carolyn McGuinness 3rd Mr P. Crisp

If you would like to join, contact Mary Schultz on

01245 259742

Perfect Photos PETER EVANS is a professional photographer and the father of Hayley, the lovely little girl smiling at you from the cover of our last newsletter. He also took the photo of Hannah and Ellen, which is on this issue’s cover, and lots more single and group portraits at our AGM in June. You can see all the photos from the AGM on www.imagicam.co.uk. (enter Extra 21 in the Access Album box). You can order copies of the photos on the web-site, and all profits will go to Down Syndrome Extra 21. Peter has agreed to come to some of our other events, if he is free, and take some more portraits of our children or family groups. If you can’t attend any of our events and would like to book a session with him privately, you can contact him on Peter.evans@barrattandcoe.co.uk or Tel. 01376 562545 9


. . . and they’re off by Peter Schultz

AS THE lights turn to green it’s all go for yet another Down Syndrome Extra 21 Go-Karting Fund Raiser. The start of this year’s 6 Hour (yes, that’s SIX HOURS) endurance race is given a new twist with the novel introduction of cash bids for starting grid positions….. you may have thought you were quick in the practise session but unless you dig your hands in your pockets (all for a good cause of course!) there is no guarantee of a good grid position. So with some of the fastest

All lined up and ready to go

Tight on the corner and no-one is giving way

A brand new go-kart - won’t look like this for long drivers nicely positioned towards the back of the grid and with over £500 already raised, we’re ready for the off. This year we have the added bonus of driving in brand new karts and, looking at the photograph of the very first Go-Kart pictured here, they have certainly come a long way in terms of both comfort and speed. The new karts have a top speed of around 70mph which is quite enough when you’re sitting about six inches above the ground. Once again there was the usual mix of experienced drivers and complete novices which always adds spice to the event. Everyone had a great time and all of the drivers had their stories to tell to go along with the inevitable bruises to both the body and in many cases the ego (we can’t all be Michael Schumachers!). At the time of writing we have raised close on £4,000

Britain’s first kart - imagine yourself after six hours in that! 10


The alternative winners

Two belles of the day, Ellen Shultz and Ella Corrigan

The Monkie Knife Flight Crew - little Beth seems The real winners, including our own chairman Greg amused Stuttle and his team in 3rd place so it has once again been another hugely successful event. After laps had been bought, back handers had been counted, bribes had been paid, we finally had our winners . . .

First: Team Euro led by Mike Risby & Steve Mann Second: Team Osel led by Graham Russell Third: Monkie Knife Fight led by Ben Corrigan ….. and then there was the ‘real’ fastest karts result First: Team Euro….. again! Second: Whack with Kiaran Whitehead Third: Matrons Big (big what I ask myself?) led by Greg Stuttle

Space doesn’t allow us to mention all of the teams and drivers but without everyone involved it would not be possible to raise such large amounts of money year after year. Our thanks go out to everyone, both drivers and sponsors who helped make it such an enjoyable and successful day. We hope to see you all next year!!!! 11


Happy Birthda Birthdays June - September The following children and young adults are celebrating their birthdays in June, July, August and September. We wish them many happy returns. June 1st 2nd 3rd 4th 8th 9th 12th 15th 15th 21st 23rd July 3rd 4th 7th 11th 16th 20th 21st 23rd 28th

Happy 4th Birthday Daniel with lots of love from Mummy, Daddy and your brother Thomas. Well done for coming 2nd in the egg & spoon race at your pre-school sports day and for showing good initiative by holding the egg firmly onto the spoon!

Samantha Hayter (18) Sam Talbot (13) Isabella Winstanley (3) Matthew Chapman (15) Miss. C Twinn (31) David Martin (17) Clara Chamberlain (5) Katie Rodrick (5) Katie Bennett (5) Dominic Simpson (16) Daniel Stuttle (4) Craig Readion (16) Adam Fisher (9) Thomas Lee (9) and Nathan Turner (8) and Rosemary Walker (2) Alexander Wrench (19) and Mark Eveleigh (6) Sofia Aarestad (3) Joanne Gribble (18) Matthew Cox-Vinell (16) Luke Woolley (12) Kylie Chambers (18)

Many happy returns to Rosie Walker who was 2 on 7th July. Lots of love from all your family.

Many happy returns to Daniel, who celebrated his 16th birthday on August 6th. With love from Mum, Dad, Helena, Sophia and all your family and friends.

August 2nd Christina Gates (13) 3rd Amy Flood (11) and David Irele (11) and Michael Palmer (10) 4th Joseph Taylor (16) Jennifer Smith (14) and Daniel Nussey (16) 6th 18th Adam Smith (8) 19th Rachel Nash (17) 23rd Robert Elford (21) and Ruby-Anna Codiroli-Sparrow (7) 25th Alexander Eyklebosch (6) 26th Maria Mountford (17) 27th Daniel Sedgewick (16) 29th Jusdeep Virdi (9) and Giles Warr (14) September 3rd Emily Harvey (14) Francesca Saffron (11) and Alexander Owen (10) 4th James Hamilton (18) 6th Mark Baumann (15) 7th 12th Michael Torrens (7) 17th Charlotte Coughlan (18) and Sydney Jane Clark (3) 18th Noah White (7) 20th Luke England (11) 27th Emily Copping (4) 28th David Crisp (27) 12

Many Happy returns to Mark who celebrated his 6th Birthday on 11 July, He had a Party the Sunday before and enjoyed spending some quality time with lots of his friends.

Happy 13th birthday to Sam from Mum, Dad, Alice, Emily and all your family.


ay Here are Adam with big brother Dominic and sister Becky on a recent visit to Disneyland Paris. Adam is 8 on August 18th and Becky 5 on August 7th – Happy birthday to both of them with love from Mummy, Daddy, Dominic and the rest of the family.

Happy Birthday, College Girl! With love for Maria’s 17th birthday from Mum, Dad and all. Happy 14th birthday, Emily, with lots of love from Mummy, Daddy, Jo & Rod, Alex & Jem, Vanessa & Dan, Jen & Jon and, of course, Josie.

Alexander is six years old on 25th August and has just finished his first year at school. Here he is at the Plant Fair at Dinard in France.

Happy Birthday Katie, lots & lots of love & kisses from Mummy & Daddy Jasmine, Jade & Charlotte

This is Joanne on her 18th birthday. “Happy Birthday”, sweetheart, with love from Mum, Dad and Ben

Happy 14th birthday to Dominic from Mum, Dad & Ashley, we were so proud when he did this for the 1st time, he'll be joining Ellen MacArthur before we know it. Happy 11th birthday, Luke. Love from Mum and all your family and friends. 13


Shake Your Tail Feather by Rob Eveleigh

SHAKE Your Tail Feather was the latest show put on by the Mushroom Theatre Company that believes in total inclusion of people of all abilities in drama, dance and song. Mark has been going since Christmas to sessions one hour long on Saturday mornings specifically designed for people with special qualities from wheelchair bound to mild learning difficulties. He has progressed from not wanting to be left and snuggling up to Mum or Dad on the sofa to, “Mum and Dad who, I’m off!” Mark has the most fantastic time on a Saturday mornings and we get bits of show rehearsals and snippets of songs he has sung for the rest of the day afterwards. The MTC have really done wonders for Mark’s confidence and communication. This particular show was called “Shake Your Tail Feather” and was a variety show of around 20 numbers. Mark was in four of them. Mark improvised, thrilled the audience with his comic twist and took a bow at every opportunity, even for the other performers. The introduction where the whole cast danced a routine to the Blues Brothers classic Shake Your Tail Feather included the “Specials” as Mark’s group are known, the really young “Buttons” toddlers group right up to the “Seniors” and “Adults” groups. Mark loved the chance to do just that as part of the routine and wiggle his tail feather at the audience. The number involved all abilities including wheelchair-bound stretching their boundaries and showing how determined and graceful they could be. Mark loved taking time out to have a quick

The Mushroom Theatre Company in action, Mark is in the front row, second from the left chat with his senior during the number, giving inquisitive “you sure this is going alright?” kind of looks to his fellow performers, and nodding to the audience to indicate that “Yes in fact, he was pleased to report that it was all actually going rather well”. Then he had another break for the rest of the first half. After the intermission Mark was in the “Bare Necessities” number based on the old jungle book song, and under the care of one of the seniors he danced and sung his way around the stage doing all the right stuff with no hint of any inhibition whatsoever, waving to the front row of the audience whilst walking past them as part of the routine, and being very determined that they should get fully involved, he wasn’t taking no for an answer, but gave a beaming grin when they caved in and nervously waved back! And finally, which is just the way it should be, Mark was in the finale 14

with all the cast, again in a vibrant thank you and goodbye number. At the end Mark being Mark decides that the curtain call has come far too early, rummages his way out from behind the curtain to take a final very low and flamboyant bow, only to be grabbed round the waist and whisked back in behind the curtain with a surprised look on his face. What a Friday night, and then there were the two other performances on the Saturday. Mark even won the “Paul award”: each of the staff give an award to one of the children at the end of the show to recognise the best progress in the group, and Paul chose Mark for his award. Mark was shattered for the next few days but had such a fantastic time and did so well that he has been invited to join the group for the ordinary children on Thursday evenings as well. Really, his social diary is just becoming such a whirl, we’re just in a spin trying to keep up with it all.


Our SPECIAL grandson AS ALWAYS is the case being grandparents we were looking forward to the birth of our second grandchild with excitement and general concern for our daughterin-law’s welfare and that of the child. On the morning of 18th August 1998 Adam was born. Later that morning our son came to confirm that he was going to the Hospital to collect his wife Alison and baby Adam. Immediately my wife saw his face she knew something was not right, at which point our son broke down and told us that Adam had Downs Syndrome. Of course this hit us like a ton of bricks and our thoughts were for little Adam, our son and especially our lovely daughter-in-law. I think being the first time that I had seen my son so upset was the worst. That really hurt. At first you think of all the very worst things that you know at this stage about Downs Syndrome.

by Victor and Ivy Smith

now there is a little sister Rebecca, or as we call her ‘Bossy Boots’ taking Adam under her wing. Paul wrote in magazine issue No. 3 of his own feelings in ‘Adam the beginning’, which explains his thoughts and emotions at the time.

makes straight for our large bed to use it like a trampoline or climb inside and sit there reading. In some respects Adam will be more content to play quietly once he gets involved in something. He also receives batches of speech

Well, nearly eight years have now passed and Adam, who has always been treated exactly the same as Dominic and . . he has been a joy Rebecca, is an equal part of and will be given every a close-knit family with lots of love. He is cheeky and chance to have an gets away with most things because of his disarming independent life through the smile. He attends dedication and efforts of his mainstream school with his siblings and has a fantastic mum and dad one-to-one helper who adores him. He Adam can do almost in turn loves going to therapy at the speech and everything for himself, he lessons where every pupil language centre every 6 months and member of staff know mixes well with everyone and him. His last school report and is making great progress. was excellent as his By all accounts Adam is growing takes part in games and position in class was far up to be a wonderful lad and will swimming from bottom, which just definitely get all the support he goes to show what can be needs. We are very proud of him achieved with as we are of all our grandchildren determination, which Adam has in and especially of our son Paul and My wife Ivy and I both got very abundance. emotional over the next few days daughter-in-law Alison who do a when breaking the news to others. marvellous job bringing up their Adam can do almost everything Our worries were how Paul and children. Alison were going to cope. for himself, he mixes well with everyone and takes part in games It is no wonder then that friends We should have known better and swimming, which he loves. If of ours remark recently on how than to worry. Paul and Alison there is anything he doesn’t want good the children were when had made up their minds that no to do he will let you know. As far visiting them and how well Adam matter how their child was and as food goes Adam will never is doing. We thought when Adam regardless of what any tests leave the table until his plate is was born, ‘Why us’ – well, ‘Why showed, it would not make any completely empty, even if it does not’. If anything, he has been a joy difference. Adam was their flesh take ages. and will be given every chance to and blood and just as much a have an independent life through treasure as their older son Dominic If Adam goes on special trips and the dedication and efforts of his who adored his little brother. We visits, his brother and sister are fantastic mum and dad and as grandparents have been very often included and they all take support of his family and friends. proud of the way Alison and Paul care of one another. And when deal with situations and especially visiting us the cheeky little devil Who can ask for more?

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Our Day at the Opera by Doris Mountford THIS YEAR we were excited by the chance to travel through the delightful Halstead countryside to Stanley Hall, to participate in a workshop before watching the dress rehearsal of Rossini’s opera Cinderella. The delightful Charlotte met us. She showed us the scenery from last year’s opera, Falstaff, and explained to us all about such features of stage painting as exaggerations and perspective. Then we were collected by a trio of animateurs /musicians for a workshop to prepare us for the performance. Our youngsters engaged in some singing and watched and even tried out some shadow puppetry, as our new found friends recounted the story of the opera. By the end of the workshop we all understood who was who in the opera and felt far more confident that we would be ready to enjoy it. But first there was a little time for us to picnic under the ancient trees and play among the new-hatched chicks beside the duck pond. In the huge Marquee, our children were immediately fascinated to see and hear the substantial orchestra, as they tuned their instruments. The opera came alive, with skilful acting and a very high standard of performance throughout. The characters were unforgettable and our youngsters loved them. The libretto was in English (rather than the original Italian) and it was a witty and vibrant translation at that. The clarity of the singing meant that every word could be easily heard and our children delighted in the characterisations and the whole sense of fun. As some members of the orchestra remarked, “Not many operas end to screams of approval from the audience and to the booing of the villains!” We then, reluctantly, took our leave, but not before we had the chance to take plenty of photographs of our lively bunch of children with some members of the cast. The whole event was simply splendid!

“Why, oh why can’t I go to the ball?” Cinderella - the star of the show with some of her admirers

The group poses on stage after the performace

Patrick with the ugley sisters

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Barn Dance 2006

Some of our group show their natural talent for opera . . . . . . while others need some time before joining in

THIS year’s barn dance went with a swing again, as Lykerty Splyt talked us through the moves. Despite the soaring heat from the earlier day, with fire doors open creating a draught, and lots of checking up on children playing outside, we managed to keep cool and even did quite a bit of dancing.

Amber, Hannah, Ellen and Maria take a break from dancing

Several groups managed to master the steps but our group was sabotaged by Tony Williams who reinvented all the steps and had everyone in stitches as he went in the opposite direction to everyone else but always with a smile on his face – thanks for the entertainment, Tony.

And action . . .!!!

The general consensus was that we can hardly wait for next year’s dance and hope Tony will be able to join us again.

Trying out some of the shadow puppets

We feel most privileged to be invited and thank everyone who made it possible for us to have such a special day. We congratulate the company on their impressive achievement and on the high standard of this unforgettable opera. We hope that we may come again. If this is culture, then it could hardly feel more comfortable and natural to acquire now that our children have begun to feel the power of its magic!

“If you go there, I’ll go here . . .” Andrew’s attempts at organising the group prove futile.

“Now which cocktail would you like next?” 17


Emily’s photo story I slept in a cabin on a bunk bed.

The IN MAY of this year, Central London came alive with the news of a strange rocket which had landed, made of wood and seemingly very old. Stories unfolded over the weeks of the girl who landed in the rocket being pursued by a gigantic elephant through the streets of London. A piece of fiction? We were curious and set off on a warm Sunday morning to St. James Park to see for ourselves.

This is the boat I slept on when I went away with my school for a week. I really enjoyed the entertainment at the barbeque evening . . .

. . . and I loved dancing with my friend. My friend and I enjoyed lots of water sports.

We learnt lots of things and sometimes I knew the answer. Thank you God for the wonderful weather you gave us.

I had a really lovely week away and I can’t wait for next year!

First of all, we stopped by Horse Guards Parade to view the weirdest looking space rocket we had ever seen. Trying to imagine how it would cope with entering our atmosphere, we knew we were about to enter a magical world where such things are possible. Entering St James Park, it did not take long to locate a large group of people surrounding an equally large girl puppet, operated by a series of cables and a crane-like apparatus behind her. She was sleeping blissfully in a deck chair, snoring delicately, after her walk around Central London. Ellen was amused by the snoring but also a little wary due to her size. When rested, she opened her expressive eyes and slowly began to get up. Then we realised just how tall she was, about 6 metres! She had such a beautiful face and was able to look at you with her doeful eyes and melt your heart. Ellen loved her and dutifully followed her around St James Park. After watching Doctor Who and the shop manikins, the thought did enter our minds, was she just a puppet or an alien? . . . However, we were all bewitched by her as she started to do her exercises before embarking on another walk around London and I can quite honestly say that all who watched her were amazed at the sheer effort required by the French puppeteers to co-ordinate her every move – from walking to the fluttering of her eye lashes. She had captured the hearts of all present. Would the Elephant do the same? We searched for the Elephant but to no avail and soon realised that the finale

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Sultan’s Elephant A magical and unexpected day

By Mary, Peter & Ellen Schultz.

Several people near us were practically crying. The girl followed soon after and, at last, the Elephant had found the girl.

would take place back at Horse Guards Parade. With no sight yet of this massive beast, we managed to get three of the last seats and began to soak up the sun and the glorious atmosphere surrounding us. Then we heard an Elephant’s trumpet and as he came into sight, the crowd gave up an almighty cheer and I can only say I was gob-smacked – it was at least 9 metres tall, decked out in royal trappings and moving so realistically through the crowd.

Very briefly, the story originated from the dreams of a Sultan. He kept on seeing the girl, a time traveller, in his dreams and he became infatuated with her. Dreams and reality merged and he instructed his engineers to make him a time travelling machine in the shape of an elephant to pursue this girl across decades. London was to be the meeting place at long last and we felt privileged to see the two together, enjoying each others company and putting on such a spectacular show for everyone. The Elephant made a grand entrance into the Arena by spraying water over some onlookers - I say spraying but it was more like water coming out of a fire engine’s hose! However, the meeting was shortlived, as the girl decided it was time once more to be on her travels. She was hoisted into the rocket and after a tearful goodbye, the rocket ‘took off’, leaving the Elephant and the Sultan alone once more. The whole audience could feel the sorrow in the Sultan’s heart when she departed but also his obvious joy at having found her and met her. What a magical and unexpected day! The whole 19

of London seemed drawn into Horse Guards Parade to witness such a beautiful and deeply moving meeting between a Girl and a Sultan. It is difficult to try to convey the atmosphere of the day but I think the pictures say it all. Several people said what a fantastic way of pulling people together in London rather than apart through fear of bombings – I agree. Ellen got into school on Monday and told everyone who would listen. Of course, I had taken the usual 100 photos and Ellen’s tutor group were spell bound by her account and the photos. This little story certainly lightened the hearts of all who saw it unfold. The perfect afternoon was then complimented by a perfect evening at The Rainforest Café. The moving elephants there seemed to pale into insignificance after the one we had just seen. There is an excellent website with further information, www.thesultanselephant.com and the full story of The Sultan’s Elephant by Jules Verne. There is also a short history of Royal de Luxe, the Street Theatre Company who brought such joy to the people in London. Many thanks for an unforgettable, magical experience and please bring another show to London soon.


If People with Down Syndrome Ruled the World If people with Down syndrome ruled the world: AFFECTION, hugging and caring for others would make a big comeback. All people would be encouraged to develop and use their gifts for helping others. People would be refreshingly honest and genuine. People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

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Order and Structure would rule Given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how: n n n

Schedules and calendars would be followed. Trains & planes would run on time.

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Lunch would be at 12:00. Dinner at 6:00.

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Work time would be work time.

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Vacation would be vacation.

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The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place. We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people. Therefore if people with DS ran the world: n

Anger would only be allowed in special sound proof rooms.

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Trained negotiators would be available to everyone to help deal with any conflicts. Art and music appreciation would be BIG. People would have time to work on paintings and other art projects. Acting and theatrical arts would be encouraged for all. You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.” The President’s commission on physical fitness would probably recommend dancing at least 3 times per week. People would be encouraged to get married several times to have more weddings for more music and dancing. Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG) Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”) John Travolta would be the biggest star. People would not hurt the feelings of others and they would also not lie or keep secrets. 20

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Therefore there probably would be no secret service agents, spies, or terrorists.

These are excerpts from an article by Dennis Mc Guire, PhD, from the Adult Down Syndrome Centre of Lutheran General Hospital Park Ridge in Illinois. You can read the full text, which is at the same time thought provoking and humorous, on www.nads.org/pages/ruletheworld This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. The author, Dennis Mc Guire, explains If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.


Kids in Need Day Out by Mary Schultz

ELLEN was very lucky a couple of years ago to go to Disneyland, Paris along with us through Kids In Need. A group of young people associated with this organisation were invited to take part in the Eastern Region Bentley Car Owners Club Fun Day at Easton Lodge Gardens recently. We met up at the Marygreen Manor Hotel, Brentwood at 10 a.m. on an overcast Sunday morning and had enough time to sit in vintage Bentley cars, have photos taken with Rene Zagger (P.C. Nick Klein from The Bill) who is Patron of Kids In Need and then take part in a procession of vintage cars through Essex villages en route to Easton Lodge Gardens.

Photo shoot with Rene ‘Zagger’ patron of Kids in Need

The day brightened up and we enjoyed the warm hospitality of the Bentley Car Owners Club who had laid on entertainment and a Pig Roast, as well as a vintage Fire Engine for the children to investigate. The children were thoroughly spoilt and so were we with strawberries and cream in abundance. Everybody was so friendly and made us all feel very welcome – it was the perfect sunny English afternoon. Many thanks go to Gloria Poole from Kids in Need and the members of the Eastern Region Bentley Car Owners Club for a very special day.

Here we are, ready for action

On board to the chorus of “Chitty, Chitty, Bang, Bang

We all loved the fire engine Anne and Rose look the part 21


My Birthday Cruise by Joanne Gribble

I HAD great fun on a recent cruise to Norway to see the Fjords. I saw lots of beautiful scenery. The ship was called the MS Braemar and we enjoyed some very special meals on board. Every night I danced to the ship’s Disco until after midnight. The formal dinners were very exciting and I was very nervous when the Captain asked if he could have his photo taken with me. I would love to go cruising again but it was a bit cold in Norway so next time I would like to go somewhere warmer. In september I am going snorkelling in Egypt to see if I can ‘Find Nemo’, it should be very warm there.

A very excited Joanne with the Captain of the MS Braemar

Thanks to Waitrose WE WOULD like to thank Waitrose Supermarkets at Southend for their generous donation of a Pure DAB radio which will be one of the main prizes in the raffle at our Annual Charity Ball, being held at the Essex County Cricket Ground in Chelmsford on Saturday 7th October. As most of our members know, our charity Down Syndrome Extra 21 is run solely by volunteers and we receive no dedicated funding. We therefore rely on generosity like this to help us raise the funds which we then use to help and support people with Down syndrome and their families in and around Essex. Again a big thank you to everyone at Waitrose Southend for supporting us and in the picture you will see from left to right: Waitrose Duty Manager Jim Slaney, Greg Stuttle (DSE21) holding Daniel Stuttle, and Waitrose Personnel Manager Jackie Adams. “Is that for me?” Daniel seems to be wondering

Greg Stuttle, Chairman – DSE21 22


Gateway Kidz Club We are the AFTER MONTHS of planning, Chelmsford Mencap launched the new Gateway Kidz Club for children between 5 and 16 years on Tuesday, 20th June 2006. The club was officially opened by the Deputy Mayor and Mayoress of Chelmsford cutting the ribbon, which was followed by a speech of thanks from Charity president Peter Turrall. The entertainment was provided by Dance 21 and the senior Gateway Dance Team, led by their teacher Jean Hunter. Afterwards, everybody enjoyed a free buffet provided by Chelmsford Mencap; a raffle on the night raised over £70 for the new club. Jane Inman as the Club Coordinator, who will be overall responsible for the club, and Dominique Contant as Play Leader, who will spend all of her time with the children, were warmly welcomed. If your child would like to join please contact the Coordinator, Jane Inman, on 01371 874062 0r email jane@csp-uk.com. Children must be between 5 – 16 years and members of Chelmsford Mencap before they can apply to go on the Gateway Kidz Club waiting list. Fees are payable on a termly basis due to the high numbers of people interested. The club runs during term time only every Tuesday at the Springfield Park Baptist Church Hall off Springfield Park Road, Chelmsford.

And Finally . . . OUR WEBSITE is up and running, thanks to the hard work of Greg Stuttle and several other committee members. Thank you also to Lodge Information Service, who put a lot of time and effort into designing our site, we think it looks fantastic now! We would like to know what you think about our website, so why don’t you visit us on

www.extra21.org.uk and let us know your views.

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champions “WE ARE the Champions” is the theme of this year’s Special Service for people with Learning Disabilities at 2.30 p.m. on Sunday 1st October in Chelmsford Cathedral. The event is organised by Chelmsford Mencap and will consist of drama, musical items, dance and readings. Societies, Clubs and organisations in Essex have been invited to attend with families and friends or to take part in the Service. Simon Baldock from BBC Essex will compere the proceedings and a “special” guest from the athletic world has been invited to say a few words on his achievements. If you would like more information contact Peter Turrall on 01245 251494 or e mail peter.turrall@ tiscali.co.uk

Volunteers Wanted COULD YOU spare some time to help organize events for the teenagers in our group? We would like to provide regular entertainment options for this age group, such as bowling, football, dance nights, trips to the cinema or town etc, but need more people to help. Please ring me on 01245 351161 if you would like to support this new initiative.


Summertime holiday-time Disco-time


Issue 12 / Autumn 2006