South West Thames Branch of

Down's Syndrome Association

Newsletter No. 40, October 2000

This is the version edited for web use. Apologies for less than complete presentation here. DSA branch members get a printed version from us. Your contributions, comments, letters are most definitely welcome. Contact the Editor
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Dear Parents and Friends,

At the third Branch Fun Day and Fair (at Maidenbower, near Crawley, nearest station Three Bridges), on 4th November, you will be able to meet other Fun balloons families and get ahead with some Christmas preparations. 'Crafty' Christmassy activities for the children are planned plus a stall to enable you to select cards and gifts on sale by the DSA. Ever popular Dorling Kindersley publications will be there too. Home made cakes will make the refreshments particularly attractive!

While the children are happily occupied with free entertainer and fun activities, parents will have the opportunity to meet and chat informally. Relatives and friends will all be welcome. Brothers and sisters can find it really helpful to see that there are other families with a youngster with Down's syndrome. A warm welcome awaits especially if you haven't met your Branch before.

SHIRLEY QUEMBY, Editor

BRANCH LOTTERY

Branch Hon. Secretary, Liz England, asks you to sell the enclosed tickets and return the stubs and money to her please. First prize is a magnificent framed and signed special edition print entitled DAMON REIGNS which will be of interest not only to those who follow motor racing but to all of us with an interest in a youngster with Down's syndrome.

At only 50p per ticket the Branch Committee hopes you can sell at least one book. Contact Mrs. England for further books of tickets. Perhaps you can take a table at a local 'attractor' of people to sell more? The print was produced by Honda to mark their involvement in motor sport and was given to particular people who have been part of that. Signed by both Damon Hill and the artist, it shows Damon winning the Belgian Grand Prix in 1998 in a Jordan Formula 1 car which had a Honda engine. There are other prizes too. Come to the Fun Day for the draw.
Please help your Branch to continue to support you!

BRANCH INFORMATION DAY

Great plans are being laid for Saturday, 28 April, again at Christ Church school, Purley (near Croydon). New parents are always especially welcome at our parent meetings - it is helpful to meet others and share experiences. Some topics planned for the day include 'glue ear', developing independence skills, and Portage.

CHAMPION SWIMMERS

Eileen Beard reports: Kate Powell, Stacey Johnson and David Beard (all young adults with Down's syndrome) were members of the team of eight who represented Wandsworth at the Reading National Swimming Championships on 16 and 17 September. They swam really well and each won at least one medal. Congratulations!

BIG 'H' RIDERS

Congratulations and thank you to several Branch members who cycled on the DSA Big 'H' ride in July. A good scenic route, less crowded than the Brighton version.

AGM PLUS

Your Branch Committee wants to know if you would like a new format for our annual general meeting after 2001. A picnic has been suggested, with perhaps a boat trip, or meet at a leisure centre and swim before or after the (essential but not very long) business meeting. Since the Branch's formation, the AGM has always been held with talks on topics of help to parents. Is it time we changed? Please tell a Committee member before January.

AIR MILES

Have you spare Air Miles? However few, Ros Chislett can use them towards prizes for the DSA's major fundraising occasion, the Spring Ball. Please send them to Ros (see Committee list) or to National Office.

JUST KIDS

Copies of this attractive booklet are now held by our Branch Secretary. She looks forward to hearing from you with a request for a copy to take to the hospital where your baby with Down's syndrome was born. To save postage, copies may be collected at the Branch Fun Day and Fair at Maidenbower on Saturday 4 November. DSA North East Thames Branch published the book as a real encouragement for new parents wondering if they can face life with a baby with Down's syndrome.

PERSONALISED

A member has found that a book which tells a story using the names of her children causes much delight. Two firms offering this service at a cost of around £7 per book: My Adventure Books, Springfield House, West Street, Bristol, BS3 3NP, www.myadventurebooks.com; Michael and Karen Willis, Personally Yours, 56 Forth Street, North Berwick, East Lothian, EH39 4JJ. tel. 01620 895368 email: enquiries@personally-yours.demon.co.uk and Ask for a leaflet.

DELICATE THREADS

A book with this title, by Debbie Staub PhD, is reviewed enthusiastically in the latest Scottish Down's Syndrome Association news. It apparently includes much positive advice on the inclusion of youngsters with Down's syndrome in the social activities of their peers at a time when real friendships could become difficult to forge and nurture. Woodbine House are the publishers, ISBN: 0-933149-90-5.

DOWNSED COURSE

The Newsletter of the DSA Liverpool Branch reports on a course for Speech and Language therapists at DownsEd, Portsmouth. The Branch had paid for two local professionals to attend. The importance of early intervention was stressed and the advantages of collaborative working between parents, teachers and S&L therapists. There is a reminder that children with Down's syndrome seem to learn best through their eyes although the point is made that memory of the spoken word can be improved with memory games, listening games and practice. On the recommendation that imitation of sounds should be encouraged, DownsEd apparently feel that more research is needed to establish whether this type of therapy is effective.

For details of courses and literature available: tel. 01705 824261, email enquiries@downsnet.org

ABOUT SATs

An article in the Liverpool Branch Newsletter explains Standard Attainment Tests as they affect children with Down's syndrome. SATs are End of Key Stage tests and happen at the end of key stages 1 - 3. This will usually be at the end of Years 2 (age about 7), Year 6 (about 11) and Year 9 (about 14) but they are not age related. If your child with Down's syndrome is in the 'right' year group for his/her age, s/he will take the tests at the same time as everyone else. If in the 'wrong' age group, i.e one or two years behind, s/he will take the tests with his/her class, not at age 7, 11 and 14.

The author of the article, Jacki Dyson, teacher and Committee member, mentions the possibility of disapplying your child from the tests but this apparently involves much paperwork and she feels is not necessary. For instance, if at Key Stage 2/3 the child is not expected to achieve levels 3/4 s/he does not need to sit the tests, s/he can simply be assessed by the teacher as working at that level or a level below or W.

All results are reported but the public statistics only include the results of children aged 7, 11 and 14. The number of statemented children taking tests is made available.

DOWNSED RESEARCH

According to the Newsletter of the DSA Liverpool Branch, research over 15 years has been carried out by DownsEd on 'The education of individuals with Down syndrome: A review of education provision and outcomes in the UK'. This was published in the Times Educational Supplement on 7 July and is on www.downsed.org/ The extract points towards enormous advantages in mainstream schooling and the possible advisability of closing special schools. Social development in the teenage years is, however, affected by the small number of children with learning difficulties in mainstream at present.

INCLUSION

Disability Equality in Education, a registered charity, offers training to teachers and others, tailored to the need of the school or college. Ask for their leaflet: Are you prepared for the FUTURE? from DEE, Unit 4Q, Leroy House, 436 Essex Road, London N1 3Qp, tel. 020 7359 2855, email r.rieser@btinternet.com

MAIDENHEAD CONFERENCE

East Berkshire DSA are holding a conference on Saturday 11 November, 10 - 4.30 at Altwood School, Altwood Road, Maidenhead. Keynote speakers will be Sue Buckley, Gillian Bird and Ben Sachs from DownsEd at Portsmouth. There will be workshops in the afternoon. Bookings to J. Palethorpe; enquiries to Lynne Haslam 01628 670992. DownsEd speakers are in great demand.

BABY WISDOM

A baby's brain is shaped by its own experiences. Connections are strengthened and weakened - those used are reinforced, those not used are not. Food for thought!

SIGN ALONG

The Signalong Group publishes SIGNalong UPdate with information to help those working with children and adults who benefit from signing. They are at The Communication & Language Centre, North Pondside, Chatham Historic Dockyard, Chatham Maritime, Kent, ME4 4TY, tel. 01634 819915/832469. Their Autumn 2000 edition reports on It's My Life, a manual in the self-advocacy project. A further manual, Independent Living will be available early next year. In addition to a list of publications, the newsletter invites readers to send for their Christmas cards which will be overprinted with your greeting.

RESEARCH FOUNDATION

Supporters of the Down's Syndrome Research Foundation have received a letter and up-date on this organisation's plans. To find out more or offer your support, contact Peter Elliott at DSRF, 18 Daws Hill Lane, High Wycombe, Bucks HP11 1PW, tel. 01494 521826, www.downsyndromeresearch.force9.co.uk or email Peter@downsyndromeresearch.force9.net

LOCAL CONTACTS

You will see the sex and age of each member's child is now shown on the Committee list. For the full Contact List of members in your area, send your name(s), address, telephone number, membership number with age, sex and name of your child to Shirley Quemby (see Committee list). Being in touch with other parents near you can be most helpful especially when seeking schools or specialist medical professionals. If you have no local parent group and feel one is needed, this is a good beginning.

WORTHING GROUP

Secretary Jane Yos continues to run this active parent group. For future events contact her on tel. 01903 772339 or email Jane.Yos@Care4free.net

CROYDON PARENTS

Parents in Partnership Croydon publishes a newsletter advising parents of children with any special needs of a variety of activities. Contact telephone numbers are 020 8651 6198, 020 8668 1907, 01883 627394.

READERS WANTED

The Grove Nursery in Wimbledon is keen to have a young adult with Down's syndrome to read to its children or play with them. Please offer direct to Vivienne Kimber, The Grove Nursery, Wimbledon, London SW19 3QX, tel. 020 8644 3562 (h), 020 8540 2388 (nursery).

GOD'S PERFECTION

A story contributed by a member: "In Brooklyn, New York, Chush is a school that caters to learning disabled children. Some remain in Chush for their entire school career while others can be moved to mainstream. At a fundraising dinner, a father of a Chush child asked: "Where is the perfection in my son Shaya? Everything God does is done with perfection. But my child cannot understand things as other children do. My child cannot remember facts and figures as other children do. Where is God's perfection?" The audience was shocked and pained by the piercing query. "I believe," the father answered, "that when God brings a child like this into the world, the perfection that He seeks is in the way people react to this child".

The story continues with a description of boys playing baseball in a park. Shaya knew the boys and asked his father if he could join in. The side asked were losing but invited Shaya (not an athletic child) to join them to bat last. By then the score was critical but with encouragement from everyone he scored with a "grand slam" and was cheered by all players as a hero. "That day", said the father softly, "those 18 boys reached their level of God's perfection."

NEW ADDRESS

People First (Self Advocacy) have moved from Kings Cross to: 299 Kentish Town Road, London NW5 2JT, tel. 020 7485 6660.

LEAVING HOME

"nuggets", the newsletter of the Growing Older with Learning Disabilities Programme of the Foundation for People with Learning Disabilities lists a booklet entitled Leaving Home, Moving On: Housing options for people with learning disabilities. It explains for teenagers and their parents different ways in which housing and support can be provided. An accessible version of the booklet is being prepared. Individual copies are available free from the information department tel. 020 7535 7420.

Behavioural

STAMMERING

Stammering, stuttering, dysfluency seems to affect people with Down's syndrome. The DSA, in collaboration with the British Stammering Association (BSA), publishes a helpful booklet. There is also a BSA leaflet entitled Information for the partners and spouses of people who stammer. Tel. 020 8983 1003.

BULLYING

Under this heading, the newsletter WELLSPRING quotes: "Those who can, do; those who can't, bully". Several contacts are given for use by families or the bullied person: Kidscape 020 7730 3300 (helpline for parents Mon - Fri 10 - 4); Childline 0800 1111 (freephone); Countering Bullying Unit 01222 551111 or 01222 506532; Careline 020 8514 1177 (telephone counselling for anyone experiencing bullying or other problems); Children's Legal Centre 01206 873820 (Mon - Fri 10 - 12, 2 - 5).

OBSTINACY

Is it obstinacy that makes some with Down's syndrome stick to routines and be upset by change? If you missed the article entitled THE GROOVE in the latest DSA Newsletter, do be sure to read it. It could help with our understanding of our youngster. Your editor believes the cause is in the chemicals in the brain and a solution is to relax tension by making the person with Down's syndrome laugh. Readers' comments welcome. Our son has been travelling independently for 14 years and twice has been delayed by an undesirable passer-by. On each occasion, the 'groove', the desire to complete his journey as planned, has enabled him to do that.

CYCLING

A tricky part of teaching a child to balance on a bicycle is holding the back of the saddle to keep the child upright without the child feeling if the teacher has let go or not. A junior saddle fitted with a strong stiff yellow handle is available from cycle shops.

Congratulations to Lisa for mastering two wheels just before starting college. It is never too late. Your editor offers practical help on learning to balance whatever the would-be rider's age.

Useful Organisations

PETA INNOVATIONS

Peta (UK) Ltd. publishes a 3 page catalogue with colourful photographs of grips and tools to assist people with disabilities. 'Innovating for independence' is their slogan plus 'probably the most comfortable gardening tools in the world' They also offer tabletop scissors for various purposes. For details: Mark's Hall, Mark's Hall Lane, Margaret Roding, Chelmsford, Essex, CM6 1QT, tel. 01245 231811, email: peta@peta-uk.com

WINSLOW

Story cards, workbooks, baseline communication skills, maths aids and a wide variety of educational toys appear in the 88 page Winslow catalogue which is available from Winslow Press Ltd., Telford Road, Bicester, Oxon, OX6 0BR, tel. 01869 244644, email info@winslow-press.co.uk

PHAB

The glossy A3 Epsom & Ewell Phab Chronicle is an annual report with a difference. Phab, or the integration of PHysically disabled with Able Bodied young people, is a national charity with groups around the country. This one meets at 113 East Street, Epsom, Surrey, KT17 1EJ, tel. 01372 729492. Clearly the Epsom young people have had many great times and accomplished remarkable achievements thanks to the many leaders and helpers.

FLEDGLINGS

This organisation is "helping children to spread their wings" according to West Sussex newsletter WELLSPRING. Based in Cambridgeshire, it offers advice for parents of a child with any sort of special needs by searching out equipment or information free of charge. Anyone who cares for children under 8, or with special needs whatever their age, is invited to telephone their requirement to 01799 530412, email Fledglings@btinternet.com Items such as specially shaped clothing, computers and balance trainers are mentioned.

DATES FOR DIARIES

2000

Saturday 4 November Third Branch Fun Day and Fair, Maidenbower, 2 - 5.30 and Branch draw

2001

Sunday 21 January Branch Committee meeting
Sunday 11 March Branch Committee meeting
Saturday 17 March DSA Spring Ball
Saturday 28 April Branch Information Day
Saturday 13 October DSA AGM

BRANCH COMMITTEE

Two Committee members have recently resigned because of family or other pressures and are sincerely thanked by those who have worked with them while planning and running Branch activities. Very best wishes to Alan Mayne and Enrique Lopez.

BRANCH COMMITTEE (contacts)
All officers and committee members are available to DSA members seeking help or support.

Member's name & contact Offspring born in
CHAIRMAN - Mr. Paul Everington 01293 889777 daughter 1997

VICE CHAIRMAN - Mrs. Karen Edmonds 020 8330 1597 son 1994

SECRETARY - Mrs. Liz England 01932 344482 son 1994

TREASURER - Mr. Stewart Bailey 01293 881232 daughter 1999

NEWSLETTER EDITOR/MINUTES SECRETARY
Mrs. Shirley Quemby 020 8642 3720 (fax 020 8241 3947) son 1971

BRANCH MINI-LIBRARY - Mrs. Maggie Almrott 01403 257083 daughter 1984

OTHER COMMITTEE MEMBERS

Mr. Mark Anderson, 020 8661 9400
Mrs. Rashné Everington 01293 889777
Mrs. Yolande Hesse 01252 710529
Mr. Ajit Mane 020 8979 7485 son 1988
daughter 1997
son 1987
daughter 1981

REGIONAL DEVELOPMENT OFFICER
Miss Rosalind Chislett(answerphone/fax) 01342 826250 daughter 1979

Member's name & contact	Offspring born in
CHAIRMAN - Mr. Paul Everington 01293 889777	daughter 1997
VICE CHAIRMAN - Mrs. Karen Edmonds 020 8330 1597	son 1994
SECRETARY - Mrs. Liz England 01932 344482	son 1994
TREASURER - Mr. Stewart Bailey 01293 881232	daughter 1999
NEWSLETTER EDITOR/MINUTES SECRETARY Mrs. Shirley Quemby 020 8642 3720 (fax 020 8241 3947)	son 1971
BRANCH MINI-LIBRARY - Mrs. Maggie Almrott 01403 257083	daughter 1984
*OTHER COMMITTEE MEMBERS*
Mr. Mark Anderson, 020 8661 9400 Mrs. Rashné Everington 01293 889777 Mrs. Yolande Hesse 01252 710529 Mr. Ajit Mane 020 8979 7485	son 1988 daughter 1997 son 1987 daughter 1981
REGIONAL DEVELOPMENT OFFICER Miss Rosalind Chislett(answerphone/fax) 01342 826250	daughter 1979

NATIONAL OFFICE 020 8682 4001 (fax 020 8682 4012)
155 Mitcham Road, London, SW17 9PG
e-mail info@downs-syndrome.org.uk