Newsletter No. 41, March 2001

  Dear Parents and Friends,

Members, parents, professionals, relatives and friends are all invited to the Branch's annual open day at the now familiar venue of Christ Church School in Purley. Your Committee (all parents) have designed a programme attractive whether your child is new, at school, or moving to the next stage, with the achievement of independence as the theme. You will find Christina Katic is especially skilful at making her topic of welfare benefits easy for all of us to understand. John Parry's experience with Portage will be invaluable on earlier stages of independence. Del Wilson will give the opportunity for parents and your teenagers to ask questions about the value and practicalities of going on to College after school. And two young people with Down's syndrome will be speaking.

You and your family will benefit from the talks and chats that will fill the day and others will be pleased to meet you and share your joys and concerns.

BRANCH OPEN DAY 28 APRIL

To help the volunteers who look after us so well at Christ Church School, Purley, please complete and return the form on the enclosed programme as soon as possible. If any members need help with transport advice, please ask a Committee member.

The crêche helpers are most helpful but, as the crêche does not have elastic walls, we ask that you tell us if you expect to bring your child(ren).

PARENT CONTACT LISTS

As a service available only to DSA members and to assist those who wish to meet other members in their area, the Branch has created Parent Contact Lists. Please contact the editor if you would like to get in touch with other parent members who live near you. An up-dated list is enclosed (sent by mail with the printed newsletter to DSA members in our branch) for those already in this scheme.

Membership of the DSA is beneficial to the whole family of a child with Down's syndrome. It is important to keep up your membership and encourage parents who are not members to join. Membership is free for the first year. Contact National Office to join or renew and show your support for their tireless work on our behalf.

DAMON REIGNS

Thanks to the work of our Branch Hon. Secretary and many supporters, the raffle for her framed picture of Damon Hill and other prizes raised £458.40 net. The draw took place at our Third Fun Day and Fair at Maidenbower on 4 November and was won by Barbara Dolan who has run Dorling Kindersley bookstalls for the Branch. Second was past Branch Chairman Mark Anderson and third the Chairman of the Damon Hill Supporters Club.

ANDREW IS KING

Few of us see American newspapers but we would all have enjoyed the report of the election of a high school king and queen in Minnesota Herald-Sun, Durham, North Carolina, 7 October 2000. Out of five boy and five girl candidates chosen annually by senior pupils, the entire student body elects the winners by secret ballot. Seventeen year old Andrew Dooyema has Down's syndrome and from the report has clearly earned the support and respect of his school and the population of 4,500 in the town of Luverne. Andrew has apparently let his friends and family know they may call him "King Andrew" and provide shoe-tying services!

ANOTHER BRANCH FUN DAY

The modern and welcoming Community Centre at Maidenbower (near Three Bridges station) has been booked for our fourth Branch Fun Day and Fair. Be sure to keep Saturday afternoon 10 November 2001 free to bring your families and friends to meet others and have a fun and relaxing time together. We are indebted to the Everington family for leading this successful initiative but Rashné would like help in finding a suitable entertainer. If you have a suggestion please contact her quickly (see Committee list). Our talented Committee brought a wide variety of activities last November and old and new favourites will be there on 10 November.

GIFT AID

If you pay income tax, the value of any cash donations you make to the Association (or Branch) can be increased at no direct cost to you. All that is needed is a declaration that the payment is to be treated as "Gift Aid". Further details available from our Treasurer.

FUNDRAISING

Whilst it is not a condition of membership, some members really enjoy raising funds for our Branch. Please consider doing this as we receive no support whatsoever from your subscription to National Office and running meetings and sending out Newsletters drains what we have. How about an aromatherapy party, or similar. If you are willing to forfeit the host/hostess's gift, a percentage of income may be paid to the charity of your choice. Perhaps your Sainsbury's would give us their takings from their penny bags scheme?

Members may like to Send your cheques to our Branch Hon. Treasurer!

GO KART

DSA North East Thames Branch are holding a Go Kart fundraising day at Buckmore Park near Maidstone on Saturday 12 May. Details from Mary Schultz 01245 259742.

BEHAVIOUR - DOWNSEd

The report in the DSA NE Thames Branch Newsletter, EXTRA 21, of a talk by Professor Ben Sacks from DownsEd contains the following food for thought: "Good behaviour leads to acceptability, anti-social behaviour leads to trouble. Whilst those with Down's syndrome generally display good social skills and an awareness of other people's feelings, care must be taken not to reinforce bad behaviour by talking about it too much, inadvertently rewarding it with attention (even a smack), avoiding (deferring) difficult situations, not stretching our children enough." For more information about DownsEd 02392 82426 and www.downsnet.org.

HEALTH RECORD

UK growth charts are available for your Personal Child Health Record, or 'Red Book', to replace the US charts used in the first edition. The replacement growth charts also refer to head circumference data and weight guidance. In addition, a 20 page insert is offered which will help parents and professionals maintain the health and well being of babies and children with Down's syndrome. If your Health Visitor has not provided copies, telephone 0191 455 4286.

DOWN'S HEART GROUP

Many babies born with Down's syndrome have a heart defect. The Down's Heart Group, a nationwide charity, offers invaluable support to parents. Its members have themselves experienced the problems faced when a baby's diagnosis is likely to lead to serious medical treatments. Parents can contact Penny Green, Down's Heart Group, 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379, www.downs-heart.downsnet.org/

CROYDON PIP

Parents in Partnership Croydon holds meetings/workshops on Monday evenings at Christchurch Methodist Church, Lower Addiscombe Road, for parents/carers of Croydon young adults who have special needs. For the programme of March workshops and other initiatives tel. 020 8651 6198. "Letting Go" workshops on Friday or Saturday 23 and 24 March are particularly recommended.

Consideration is being given to setting up an informal group for parents of children aged 0 - 5 years with Down's syndrome. There is no charge for PIP Newsletters. Additional contact numbers: 020 8668 1907, 01883 627394.

CONTACT A FAMILY

The South London branch now publishes a 12 page newsletter for parents and carers of children with special needs and professionals who work with them. Self-help groups of interest to parents in Croydon, Sutton and Merton are listed. Contact a Family publishes 9 factsheets which are described. They are also planning to run workshops. For more information or to join their mailing list: Jo Winsloe and Helen Thompson, 181 Haydons Road, London SW19 8TB tel. 020 8543 9068, www.cafamily.org.uk

Pi NEWS

Parents for Inclusion, based in Lambeth, London SW8, have sent their Newsletter. Below the title Pi NEWS is the statement: "Parents helping parents so that their disabled children can learn, make friends, and have a voice in ordinary school and throughout life." Events and courses for parents and professionals are organised to deepen their understanding of inclusion. Forthcoming dates for parents are Mondays 26 March and Friday 11 May, also a three day course on Fridays 24 May, 8 and 15 June. "Working together for Inclusion", for professionals and parents, will take place on Friday 8 May. For the full programme, or a copy of their most positive newsletter, tel. 020 7735 7872. www.parentsforinclusion.org A video, "Including all children" is available.

STATEMENTING

A Branch Committee member recommends parents refer to www.ipsea.org.uk/wolfe.htm to check on the present position.

GET SET TO READ

This is recommended by a parent member and available from the Early Learning Centre. Two books of pattern games for pre-reading are aimed at 4 year olds and above. The books have a Starter Stile system which makes the games more fun and encourages independent learning.

PHYSIOTHERAPIST

Mrs. Kiki von Eisenhart-Goodwin's clinic near Clapham Junction station specialises in physiotherapy for children. Kiki's slogan is "it is never too early and hardly ever too late to start therapy". Contact her for her most helpful leaflet: tel./fax 020 7207 4234 or email physio@topcat.dircon.co.uk, website www.kikisclinic.com Kiki is a member of the Organisation of Chartered Physiotherapists in Private Practice and is contributing to the cost of this edition of our Newsletter. She is fluent in English, German and Japanese.

ACTIVITIES IN SUTTON

Sutton Mencap's December and January/February Newsletters list a remarkable variety of activities for children and adults with learning difficulties. Several different sessions are on offer at Westcroft Leisure Centre, Carshalton, including swimming, multi-activity, and soft play. Details from the Centre. A new library project is planned for over 16s. Adults are offered an Art Group and the Saturday Surfers Cyber Café. Contact Mencap at 020 8647 8600, email sutcap@netscapeonline.co.uk.

CYCLING FOR ALL

There are now several sites where families or individuals can try out pedal cycles with two or more wheels suitable for one or more people with disabilities. This Newsletter has mentioned before London Recumbents at Dulwich and Battersea Parks (tel. Dulwich 020 8299 6636, Battersea 020 7498 6543) www.londonrecumbents.co.uk At Bushy Park there is Companion Cycling with a similar variety of mounts, tel. 020 8948 5000. There is also a centre at Cuckmere Haven.

MOBILITY ON WHEELS

Two organisations which may be able to help with specialist tricycles and wheelchairs are: Whizz-Kidz, 1 Warwick Row, London SW1E 5ER, tel. 020 7233 6600, www.whizz-kidz.org.uk also Action for Kids Charitable Trust, Mobility House, 261-263 West Green Road, London N15 3BH, tel. 020 8535 0100, www.action-for-kids.demon.co.uk

UPHILL SKI CLUB

This remarkable charity enables people with any sort of disability to ski - downhill of course! Whether a learning difficulty, sensory problems or wheelchair user, the medical and voluntary team of helpers provide a really enjoyable holiday. Details: Head Office tel./fax 01799 525406, www.ccksb.freeserve.co.uk By the Branch open day Roger Quemby (receptionist, as usual) will have been on his third holiday with the Uphill Ski Club and will be happy to tell you of his experiences if you ask him. Experienced able-bodied skiiers may like to volunteer to help on future holidays.

PARTICIPATION DAY

This annual event at Carshalton's Westcroft Leisure Centre is for adults with learning difficulties and offers tasters for a wide variety of sports and workshop activities. Friday 30 March 10 - 4.30 and you don't need to book. Details from Sutton Mencap 020 8647 8600 or Westcroft 020 8770 4800.

.LOCAL GROUPS

Around the Branch area are informal groups of parents who meet to give each other encouragement and share information relevant to their local areas. Some are composed entirely of parents with a child with Down's syndrome, others comprise parents with children of a variety of special needs. Worthing's group regularly mails its members and your editor and is at present organising speech therapy for some members' children. Telephone Hazel 01903 203317 for details.

FREE PAMPHLET

Look out for Parents + Schools in many shops or telephone 0800 3893 899 for your copy. Produced by the Department for Education and Employment, the 24 page A4 Winter 2000 edition contains many useful hints and tips helpful to all parents. Some notes and ideas could be of particular benefit to parents with a child with special educational needs.

CENTRE AT KEW

PARENTS NEWS announces a centre for youngsters with special needs at Windham Road, Kew. The Croft Centre offers therapies and play activities together with space for music and is run by Richmond Council. Tel. 020 8334 0471.

MINI MAESTROS

A new centre is apparently opening in Carshalton for pre-instrumental music classes for 1 - 5 year olds. Tel. 020 8680 1644.

ORGANIC BABY FOOD

Biodynamic farming, a method of agriculture which seeks to work actively with the forces of nature, is relatively new in the UK but has been recognised in Europe for 75 years. A parent member reports that Bio Bambini baby food uses fruits, meats and vegetables grown biodynamically. There will be 18 varieties in two sizes, with products for babies from 4, 6 and 8 months old. Prices will range from 49p - 89p per jar. For stockists and further information: Jeff Bayley 01483 771152, email BIOBAMBINI@AOL.COM

CRACKED SKIN

A parent recommends KAMILLOSAN, camomile cream (well-known to breastfeeding mums) for cracked skin around a child's nose and mouth. It will also help with any rough, dry patches. An alternative suggestion is a lip salve for sensitive skin.

AUTISM CONFERENCE

Mole Conferences, specialists in mental health education, are organising conferences and seminars in the London area during March to June. Subjects cover autism, some behavioural problems and help for people with chronic low performance as a result of dyslexia, dyspraxia, aspergers and other illnesses. For information tel. 01273 242634, www.mole-conferences.com

WEBSITE

The Branch thanks Ajit Mane and Paul Everington who ensure our website is up to date. Do visit it if you have access. Both would be pleased to receive your comments. Questions could be answered and reported in the Newsletter. Past Branch Newsletters are on the site. email addresses are in the Committee list.

AFTER 16 WEBSITE

This resource of choices and challenges for young disabled people is now live. Its pages include topics such as money matters, learning choices, getting around, you and the law plus a directory. The DfEE and The Family Fund are behind it. www.after16.org.uk There is a printed version (After 16 - what's new?) which is free to young disabled people and their parents and carers, £10 to others. Send A4 stamped envelope to After 16, The Family Fund Trust, PO Box 50, York, YO1 9ZX.

ADULT LEARNING

Look out for "learndirect", a government initiative to encourage everyone over age 16 to take up learning. It is open to everyone, not just people who have a computer. learndirect will be responsible for post 16 education. learndirect centres are sited in easy to reach locations such as shopping, leisure and community centres, even football clubs. Free helpline 0800 100 900 or visit www.learndirect.co.uk

INTERNET ACCESS

Sutton Centre for Voluntary Service's Networker announces BT will be offering community groups across the UK the chance to connect to the internet by awarding internet-ready computers to individuals or groups who wish to make a positive impact in their community. Details from BT Community Connections, 36 King Street, London WC2E 8JS or apply online at www.btcommunityconnections.com

RECYCLED PCs

To access bargain recycled personal computers, contact Monique at FPE, Unit F11E, Parkhall Trading Estate, Martell Road, London SE21, tel. 020 8670 9393.

MILLENNIUM VOLUNTEERS

This UK-wide initiative is funded by government to encourage young people aged 16 - 24 to volunteer to help with projects which interest them. Ongoing support will be provided to them and the organisation they choose to assist. Voluntary work builds skills and will lead to formal recognition for 200 hours of volunteering. An MV for their CV! There was a time when many with disabilities or learning difficulties were perhaps not able to use their skills for others, or maybe were not expected to do so. Taking up this challenge will be of benefit to community groups and to each volunteer. The slogan is "Build on what you're into". Ask your local authority for more information. Your editor hopes to receive reports from young people with Down's syndrome who have worked for their MV Award of Excellence this year.

Bear in mind volunteering for this scheme could lead to completion of a part of the Duke of Edinburgh Award or the Gateway Award, and vice versa.

VOLUNTARY SERVICE BUREAUX

The Branch is a member of the London Borough of Sutton Centre for Voluntary Service and is about to join the Haslemere District Volunteer Bureau. These organisations support voluntary organisations and put would-be volunteers in touch with those seeking help. The provision of valuable guidance on applying for funding is part of the free service. Branch members may wish to act as the Branch liaison person with your local Centre or Bureau. Please keep a Committee member informed.

DIARY DATES

Saturday 28 April Branch Annual Open Day

2 - 8 June DSA Awareness Week

Saturday 9 June DSA Under 5s, Bristol

Sunday 1 July Big H cycle ride

Sunday 8 July Branch Committee meeting

Sunday 30 September Branch Committee meeting

Saturday 13 October DSA Annual General Meeting

Autumn t.b.a. DSA Training for Teachers, Oxford

Saturday 10 November Branch Fourth Fun Day and Fair

BRANCH COMMITTEE  (contacts & email addresses)
 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