Down's Syndrome Association, South West Thames Branch DSA logo

Newsletter No. 36, July 1999

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 a conference held by PEOPLE FIRST, delegates listed their "Ground Rules for Support Workers" which are, I suggest, very good guidelines for parents whose offspring is no longer a child: Summer mood

Support workers must not take over;
Support workers are not allowed to speak unless they are asked to speak by a person with learning difficulties;
Support workers shouldn't butt in;
Support workers do not make decisions.

Perhaps the hardest part of being a parent is standing back and allowing our young person to experience little by little the joys - and responsibilities - of being independent.

Another bumper issue this time with particular thanks to Committee members Mark Anderson, Ajit Mane and Enrique Lopez for their contributions.

Happy Summer Holidays to you all.

SHIRLEY QUEMBY, Editor

INTERNET

South West Thames Branch has arrived on the internet scene thanks to the energy and enthusiasm of Committee member Ajit Mane who writes: so get your mouse scurrying and clicking - visit the budding website at http://www.sw-thames.dsa.downsnet.org/ If you don't have access to the internet, why not ask a friend or family member to show you?

What is on the website? How can it help? Like our Branch, our website has a local, grassroots emphasis but opens a window onto the wider world. We aim to provide as well as solicit information and to complement, not duplicate, the websites of the DSA national office and other kindred organisations. For our daily lives we need information of a local nature e.g. self-help groups, or services in our town, county or borough, and of course fun stories and news snippets that mean so much in warming our relationships with fellow members. Such information originates from local parents and professionals so, if you come across any knowledge of local interest, please send it to us. 'Sow and ye shall reap!' Start by visiting the website.

Many thanks to Bob Black (Webmaster of national DSA website) and Frank Buckley of Down Syndrome Educational Trust for their guidance and valuable help in setting the infrastructure for our website. Please send your contributions and comments about the website to Ajit Mane by email (web.swthamesdsa@cwcom.net ).

SPRING OPEN DAY

Another helpful parent information day is already being planned by the Branch Committee. Please note the date: Saturday 6th May 2000. We were made so welcome at Christ Church School, Purley (near Croydon) that we have booked the same venue.

TAPES OF TALKS

Many of the excellent talks presented at our last two parent information days are available on audio tape from Committee member Alan Mayne: music, maths, teeth, behaviour and homoeopathy. All worth hearing - ring him (01483 415874 or email ) ( Summary & ordering details) .
Synopsis of the talks by Enrique Lopez.

NEWSLETTERS

Your editor's plea for Newsletters from other Branches and Groups has led to the arrival of a most interesting variety. It is good to know there are so many pockets of enthusiasm and self-help for families with a member with Down's syndrome all over the country.

LEAVING MONEY

The Newsletter of the DSA North West Thames Branch refers to a free booklet issued by Mencap entitled "Leaving money by will to people with learning difficulties". Those who have begun to investigate this subject will know that it is extremely complicated with no simple answers. This Branch is setting up a website at www.users.globalnet.co.uk/~cardan/.

FAMILY FUND TRUST

The DSA Worthing Group Newsletter contains the following reminder: The purpose of this government funded charity is to ease the stress on families who care for very severely disabled children under 16. They help families whose annual income is not more than £18,800 and who have savings of £8,000 or less. The Family Fund Trust, PO Box 50, York, YO1 9ZX, tel. 01904 658085.

CARERS' BENEFITS

A new booklet is available to all Carers in Surrey which will help you find out to what benefits you may be entitled. The booklet, What's available?, may be obtained from Citizens Advice Bureaux or Action for Carers (Surrey) 01483 302748.

"JUST KIDS"

DSA North East Thames Branch produced a booklet a few years ago. The first photographs for it were taken at the last meeting of the DSA old South East Branch at Brentwood. It was at this meeting the Branch was divided into four of which South West Thames is one. The booklet included photographs of children with Down's syndrome with a positive note about each child. The booklet will have given hope to many new parents when they were perhaps feeling their world had collapsed. It is good to read in the North East Thames Newsletter "Extra 21" that a new edition is to be created in memory of a young mother, very active in the Branch, who recently died. If you have an eye-catching photograph of your child, posing, at work, at play or with your family, please send it to Mary Schultz, 92 Longstomps Avenue, Chelmsford, Essex, CM2 9LB, tel. 01245 259742. Please include your telephone number and a brief note about your child.

FASHION SHOW

Branch Committee member, Rashne Everington, reports on a memorable event organised to raise funds for the Down's Syndrome Educational Trust (DownsEd) with details published in Hello magazine dated 22nd June. The children modelled fashionable clothes, with confidence and pleasure, amongst many famous stars.

TEACHING READING

An article in the DSA Liverpool Branch Newsletter July 1999 reminds your editor of her early efforts to teach her son to read. There are two main ways, "Look and Say" (with flash cards) and "Phonics" where words are sounded out. The article says that most teachers use a combination. "Look and Say" makes use of the fact that in general children with Down's syndrome have better visual than auditory skills. It is important to make sure the pupil understands meanings. Flash cards can be built into sentences. The article suggests the verb "like" is useful - something that took me weeks to discover. It is also good to teach such verbs as "jump" and "kiss" which can be demonstrated, not just nouns. The author ends with a reminder to resist any attempts by the school to halt the process. Be assured, by acquiring these reading skills, speech will improve and "reading readiness" does not apply to children with Down's syndrome. And it must all be fun.

STATEMENTING

The DSA North East Thames Branch Newsletter, "Extra 21", contains an extensive report on an information day that had been held on Statementing. It also lists books and videos held in their Branch mini-library, most of which are also held in ours. This excellent 16 page edition will be placed in the South West Thames Branch mini-library for reference.

SIGNALONG

The Signalong Group, Communication & Language Centre, (see July 1998 Branch Newsletter) has moved to North Pondside, Historic Dockyard, Chatham, Kent, ME4 4TY. Its Spring 1999 newsletter, SIGNalong UPdate apologises for delays in responding to enquiries because of the move and an increase in interest. Tel. for orders and enquiries 01634 819915; for development and training 01634 832469. Founded in 1992, the Group has become the publisher of the widest range of illustrated sign vocabulary in Britain. Photocopiable worksheets are offered relating to basic vocabulary, symbols for "important" people, Key Stage 1 science and Widgit software with the Rebus Symbol system. This charity's resources cost between £10 and £60 - send sae for price list.

JENNIFER'S 'A' LEVEL

In last September's edition of our Branch Newsletter, readers were asked to tell 'A' level student, Jennifer Ellis, the sex of their child with Down's syndrome and the age of both parents when the baby was born and where. Many Branch members and members at the National AGM responded and Jennifer also obtained national statistics. Her results show that there is an increase in the number of babies born with Down's syndrome as the mother's age increases, that the age of parents does not affect the sex of the child, and that the number of each sex born is about the same. It is an elaborate mathematical study.

RUTH CROMER

Ruth is 28, an actress, she lives in Sydney near Bondi Beach and has Down's syndrome. Her fascinating story is on the internet (http//www.hartingdale.com.au/~dsansw/ruthpage.htm). One excerpt: "I didn't have many friends in senior school .. I used to go to the school library and read books. I wanted to keep learning so after I left school I enrolled at a word processing course ... I did not understand all the work and I asked for help, and that upset the teacher. The other students said they needed help too! They all thanked me for standing up to her. And I passed the course." Recommended reading (two A4 sheets closely typed).

BRANCH VIDEO

Efforts continue to find funding for this project. We have learnt it costs £1,000/minute to make a good quality video. Many possibilities are being considered and the Committee still hopes to see achievement of an informative video on Down's syndrome completed for the Association's 30th birthday next year. Offers, ideas and suggestions to Jim Cowie, Karen Edmonds or Shirley Quemby (see Committee list). Keen and substantial sponsors will be well rewarded for their confidence in this initiative.

AUTISM

A recent TV programme referred to a hormone, Secretin, which could help to alleviate autism in some children (without Down's syndrome). There are many pages at www.billytommey.co.uk plus the following address: PEACH. (Parents for the Early intervention of Autism in Children), Brunel University, St Margarets Road, Twickenham, TW1 1 PT, tel 0181 891 0121, fax 0181 891 8209. The treatment is diet-related and makes fascinating reading. Any readers with a child with autism and Down's syndrome who try this treatment - do please report to us.

WELL FITTING SHOES

In the last Branch Newsletter (March 1999) the problem of finding well-fitting shoes for girls and women was raised. Ajit Mane has a different solution which has helped Ketakee Mane, a smart 17 year old with very narrow feet (and dropped arches to up the challenge!). The physiotherapist gave a letter to her GP to refer her to the Orthotics department of Queen Mary's Hospital, Roehampton. She took along her two pairs of shoes which fitted only "approximately" and were a definite compromise in looks. The Orthotics technician took cast impressions of her feet and produced a pair of moulded tough but flexible insoles which she can put inside any shoes. That solved the fitting problem but she was really impressed when last week she went to the sports shop, chose a standard size trainer, transferred her insoles into them and breezed out of the shop wearing real "street cred" with no wobbly discomfort!
(Editor's note: Special Feetures at Thames Ditton offer very very narrow shoes for ladies; tel. 0181 398 8810).

Mark Anderson on DSA SUPPORT GROUPS

Our Chairman has been studying the coverage in our Branch area, a wide triangular geographical area extending approximately from London south of the river and covering Surrey and West Sussex. Borders are indefinite and some of our members should technically be in other Branches, and vice versa. In our view this does not matter one bit. What does matter is that ALL members in the Branch area not only enjoy the full benefits of national and Branch membership (newsletter, information days, fun days and so on) but also that everyone has access to a local Support Group.

Some DSA Support Groups are quite organised affairs, offering talks and activities, fundraising and publicising our needs and issues. Others are informal - a coffee and chat and those oh-so-valuable titbits of information or timely advice. In some areas, members attend groups not specifically for Down's syndrome which we hope meet many if not all their needs. Of concern is that there are swathes of the Branch area which do not have support groups. Branch membership is around 350 to 400 families. Well over half of these have no DSA Support Group, and barely half are supported in any way (DSA group or other organisation).

Areas with no recorded DSA Support Group: Burgess Hill, Crawley, Croydon, Dorking, East Grinstead, Epsom, Godstone, Hampton, Haywards Heath, Horley, Kingston, Leatherhead, Lingfield, London (SE, SW, W, WC), Oxted, Redhill, Reigate, Richmond, Teddington, Twickenham and Wimbledon. Areas with no DSA group but with alternative support organisations: Camberley, Croydon, Guildford.

What do we need to do??

Make sure Rosalind Chislett (DSA Development Officer) and your Newsletter editor are kept up-to-date on existing Groups, their leaders and programmes.

Consider setting up a support group! This is not complicated - Ros Chislett has a pack to help you and completing the form below will bring a list of members in your area.

We will summarise what we get back from you in the next Newsletter.

PEOPLE FIRST

This self-advocacy organisation for people with learning difficulties is holding its AGM and Conference on Saturday 18th September at the Holloway Road Resource Centre, London N7. Margaret Hodge, Minister for Disabilities, will be the guest speaker. Membership is open to everyone over 16 with a learning difficulty. Free food and free fares for members! Details about membership and the Conference: People First, 207-215 Kings Cross Road, London WC1X 9DB, tel. 0171 713 6400, email: general@peoplefirst.k-web.co.uk.

COMMUNICATION WORKSHOP

Orchard Hill College, Carshalton, offers, on 7th October, a one-day workshop on effective communication for people working with adults with profound and multiple/severe learning disabilities. Contact: Andrew Lindup, Resource Centre Co-ordinator, tel. 0181 770 8125. (Details about the College appeared in our March Branch Newsletter).

"INCLUSION" CONFERENCE

The London Borough of Sutton is holding its fourth annual SEN conference on 10th November. Two places are available to representatives of "Support Groups". It is hoped two members of the DSA Sutton Parent Group will be able to take up this offer. Any reader who would like to go, please check whether Sutton Group have found two representatives or contact June Steer at Sutton Education Services, The Grove, High Street, Carshalton, Surrey, SM5 3AL, tel. 0181 770 6513.

Groups & Organisations, news

EGHAM CLUB

A note in Paperchase, the newsletter of Disability Information Surrey, reports on the Brightlights Club which is for children with special needs in Runnymede. The club takes children between 5 and 11 for £1 per session on a Thursday evening 6 - 8 in term time. There is special play equipment at the Egham Literary Institute in High Street, Egham. Contact Runnymede Association of Voluntary Service, Unit 12, The Sainsbury Centre, Chertsey, KT16 9AG, tel. 01932 571122.

EARLY YEARS GROUP

Mole Valley Early Years Liaison Group is holding an open meeting on Tuesday 28th September at Dorking Halls. A free workshop with Roma Lear ("Play Helps" and "More Playhelps") is being planned for Tuesday 5th October in Dorking. The Group is concerned with children up to 14. Contact Sue McGuigan tel. 01306 740095.

LIVING PROSPECTS

Leaflets from this charity, which was founded more than 20 years ago as A Cause for Concern, describe a Christian voluntary organisation which offers housing, work and practical information. It discovered very few people with learning disabilities attended churches - perhaps because their reading ability was limited or their ability to think in abstract conceptual terms. Resources available include easy to read Bibles, specially written song books, and literature to help ministers and congregation members be welcoming and understanding to adults with learning disabilities. This registered charity can be contacted at Prospects, PO Box 351, Reading, Berks, RG1 7AL, tel. 0118 950 8781, e-mail causeway@prospects.org.uk.

DOWN'S HEART GROUP

Another encouraging Newsletter has just arrived from this invaluable organisation. If your baby or child has Down's syndrome and a heart defect this charity has extensive advice and information which could be vital for you. National office: 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379.

DEPRESSION

The National Depression Campaign, a registered charity, is an alliance of many organisations and aims to support people experiencing depression, encourage them to seek help, and increase awareness and understanding amongst family and friends. We have to bear in mind that depression is more common in those with a learning disability, including Down's syndrome, and our Assocation already offers an excellent booklet. The Campaign has published two helpful leaflets: Friends & Family - Do you know somebody with depression? and Myths and Misunderstandings about Depression to guide us in the recognition of this surprisingly common condition. The NPDC, 35 Westminster Bridge Road, London SE1 7JB, tel. 0171 207 3293. (Please send stamps to the value of 50p). Hotline for a free 'comfort tape' 0800 556668.

KINGSTON CHILDREN'S FORUM

Our DSA Branch is on the circulation list for the helpful Newsletters sent out by this organisation. Is there a member in Kingston who would like to receive these direct? Please contact Valerie Markwick at The Early Years Resource Centre, Kingston Road, New Malden, Surrey, KT3 3NX, tel. 0181 547 6575. There is play equipment available for hire.

RECOMMENDED BOOK

Finding a book which explains Down's syndrome to the brothers, sisters and friends of our baby or child has always been difficult. Ros Chislett recommends: Having a Learning Disability by Margaret and Peter Flynn, published by Belitha Press, ISBN 1 855618079 @ £8.99.

BOOK ABOUT 'COLLA'

Have you seen the 39 page booklet, "'Colla': an Extraordinary Meeting", translated from Italian through the DSA Cambridge Branch? "Colla" (glue) refers to the extra chromosome which is attached to everyone with Down's syndrome and cartoons illustrate how a child with the condition might be affected. Booklets cost £1 each posted (cheques to DSA Cambridge Group) from DSA Cambridge Group, c/o 20 Grantchester Road, Cambridge, CB3 9ED, tel./fax 01223 352912. Whilst the concept is interesting, unfortunately, the typeface and wording do not make the booklet easy for a young person to read. Parents would need to absorb the story then tell it around the pictures.

NEW CATALOGUE

The Down Syndrome Educational Trust has brought out a new catalogue and invites help in making sure it reaches all health and education professionals who need up-to-date information on the needs of children with Down's syndrome and their families. The 56 pages list all the services at the Sarah Duffen Centre including mail order. A range of computer software has been added to this "PR and attitude change document" which is in "full colour with photographs and many positive messages about the lives of individuals with Down syndrome". Professor Sue Buckley would welcome any feedback on the catalogue. For supplies tel. 01705 824261, fax 01705 824265 or email sales@downsnet.org.

BRANCH FUN DAY AND FAIR

Your Committee hopes you all have the date in your diary already - Saturday 13 November - Fun ballons at Maidenbower, close to Crawley. The spacious, welcoming Community Centre at Maidenbower is easy to reach wherever you live in the Branch area. Full travel details in the autumn (or consult the Everingtons). fun faces The informality of the Fun Day enables you and your families to meet other families with a baby, child or adult with Down's syndrome in a relaxed atmosphere. For brothers and sisters this can be a really important opportunity. There will be plenty of time too for parents to meet each other and share experiences. Entertainment and activities for all ages are being arranged.

DIARY DATES

Sunday 12 September Branch Committee Meeting Maidenbower, Crawley
Saturday 16 October DSA National AGM
Saturday 13 November Branch Fun Day and Fair Maidenbower, Crawley
Sunday 23 January 2000 Branch Committee Meeting
Saturday 6 May Branch Open Day and AGM, Purley

KARAOKE MACHINE

The Branch has three Karaoke machines which may be used for speech and language practice, fun or fundraising (but you may not sell it!). Talk to Mark Anderson, Alan Mayne or Rosalind Chislett (see Committee list).