NEWS, number 2, September 2003

The new affiliate is up and running and our new Company and Charity numbers appear below. We have retained the Objects which have guided the DSA itself for many years, with the addition "in southeastern England". You will no doubt recognise that the thumb logo is a photograph of the thumb of a person with Down's syndrome - who is very pleased to help downsyndrome OK in this way. It signifies OK in Makaton and shows we are moving up!

Enclosed are two copies of the programme for our Open Day on Saturday 22 November. Please complete one if you can attend - we look forward to meeting you - and hand the spare to a teacher, SENCO, school governor or other parent who is perhaps not a member. Ask for a copy to be displayed at school. We are fortunate to have secured a full day with a team from DownsEd (The Down Syndrome Educational Trust at Portsmouth) so saving you a weekend visit to receive their training and expert advice. Early booking is recommended.

DSA AND DS OK MEMBERSHIP

Please be sure to keep up your membership of the Down's Syndrome Association both to support them in their work with top people in government and to gain maximum information to benefit your youngster. Downsyndrome OK has affiliated to the DSA and will continue to liaise closely with national office and our members.

Nearly 200 DSA members in our area have returned their buff A4 forms showing their confidence in downsyndrome OK. Thank you all. Corrections you pointed out have been forwarded to national office on your behalf.

Membership of downsyndrome OK keeps you in touch with information and activities relevant to your local area. If you are one of the three hundred who keeps meaning to send in your form, please do so! You may include it with your booking to Mrs. Tofts for the 22 November Open Day, if you wish, to save a stamp.

ON THE MOVE

We all wish national office a smooth move to Teddington - where they will still be in our area!

THANK YOU, ROTARIANS!

Following a talk given by Liz England to the Heston & Isleworth Rotary Club, we have benefitted hugely from their generosity. We are truly grateful and will be making good use of their donations.

THE DOWNSED TEAM ON 22 NOVEMBER

We are looking forward to welcoming: Professor Sue Buckley who has led the pioneering work of DownsEd from its inception; Gillian Bird, psychologist and Director of Consultancy and Education at the Down Syndrome Educational Trust; Bob Black, Education Information Officer for the Down's Syndrome Association and Mandy Wood, psychologist.

MAY TAPES

Whether you came to our Open Day at Purley on 10 May, or had to miss it, there are tapes available of two of the talks. To cover tape and postage, send £3 for each required to Mrs. L. England (see trustee list). Jenny Peers' fascinating study describing Sensory Integration is of value whatever your child's age. If foot problems are untreated, mobility can be affected in the future and we were fortunate in having podiatrist, Priya Jethwa, to alert us to symptoms common in Down's syndrome with advice on avoiding or treating these.

PEOPLE FIRST

This world-wide self-advocacy organisation, run by and for people with learning difficulties, has local speaking up groups in all London Boroughs and many other areas. Sutton People First, whose Project Worker has Down's syndrome, is becoming an independent charity. For information about People First and its many groups, tel. national office 020 7485 6660 or visit www.peoplefirstltd.com

PAYING BILLS

An easy to read guide has been launched by the Employers' Forum on Disability aimed at helping people with learning difficulties to avoid debt and to learn how to pay bills. For a free copy tel. 020 7403 3020.

ARTS VIDEO

'More than Fun' is a video, made by and with people with a learning disability, which shows three examples of good practice involving people with learning difficulties in the arts. It is accompanied by a booklet and costs £25 or £40. 'More than Fun' is part of 'Doing, Showing and Going': Mencap's Arts Strategy (£2). Order from Mental Health Media, 356 Holloway Road, London N7 6PA, tel. 020 7700 8171, sales@mhmedia.com

GP SERVICES

An average of five or six people with Down's syndrome are probably registered with every GP practice. The DSA has mailed information to all GPs in a move to improve services.

TWO-WAY COMMUNICATION

National office publishes an occasional BULLETIN which is emailed or posted to affiliate (previously Branch) secretaries for passing on to members. Trustees will receive it from our secretary by email. Items will, as far as possible, be included in dsOK news. From time to time, national office invites local group, or individual, members to create opportunities for spreading awareness, not just in Awareness Week. Any readers who see such an opportunity are welcome to contact a trustee or national office for resources. Information, fundraising and quiz packs are offered by national office.

OTHER LANGUAGES

The DSA published some years ago booklets for new parents in Arabic, Bengali, Chinese, Gujerati, Punjabi and Welsh. These are being placed on the downsyndromeOK website.

NEW NOVEL

Down's Syndrome Scotland autumn 'news' reports a new novel, Birds of a Feather, by Alan Balter in which a leading character, Richard, 19, has Down's syndrome Strongly recommended by the reviewers. Order from Amazon.com and Publishamerica.com

EASY2NAME

The first commission cheque from EASY2NAME has been received from this fundraising initiative for the South West Thames Branch, now downsyndrome OK. (Cheques payable to the Branch are still acceptable). An order form is enclosed with the request you and your friends use it to order labels for school garments, lunch boxes, shoes and everything else you don't want to lose! All members who have received EASY2NAME labels are impressed with the quality.

BIG H BIKE RIDE

Next year's ride (through particularly pleasant lanes and countryside) is scheduled for Sunday 11 July 2004.

CHRISTMAS CARDS

If your child or adult with Down's syndrome is good at drawing or painting, perhaps he or she would like to design a Christmas card for dsOK or DSA to offer for sale next year? Christmas time is a good time to suggest this as children's memories can be quite short.

CHILDREN IN NEED

Application forms for grants for organisations working with disadvantaged/disabled children and young people are available, to be submitted by 30 November. Tel. 020 8576 7788 or download from www.bbc.co.uk/Pudsey/apply

GRAVENEY SCHOOL

This excellent comprehensive in Tooting has ensured for many years that all children in Year 8 learn about Down's syndrome, preferably with a person with Down's syndrome to answer their most varied questions. Thanks are due for generous donations made following these sessions.

CONFIDENCE AND SKILLS

A challenge for all parents is to build confidence with common sense. Confidence is increased by the acquisition of skills, however simple, especially if a skill is achieved which others cannot do. Our child will have inherited some of the interests and abilities of a parent. We can observe and build on one of these, keeping our encouragement fun. The reason for this paragraph is surprise at the number of ordinary children and adults not used to handling an allen key or spanner and therefore frightened of tools. Allow simple adjustments (supervised) to toys or bicycles for an enquiring mind and improved dexterity. Pliers and screwdrivers are useful, too, and the stirrup-shaped potato peeler. Skills learnt in childhood often remain throughout life.

LEARNING TO LEARN

The Campaign for Learning (creating an appetite for learning) has published a booklet entitled 'Learning to learn in schools' which describes how to lead pupils into lifelong learning and should be of interest to parents and teachers. Their newsletter covers a wide range of ways to encourage learning including a Family Learning Weekend in October. Tel. 020 7930 1111. www.campaignforlearning.org.uk for more details.

MAKATON

From CaF newsletter: On Friday 24 October, 9.30 - 4, Makaton workshops are being held in Wandsworth. Cost £10 for parents. Contact Catriona Bradley 020 8700 0409.

THE GET UP AND GO GROUP

This group has been formed by Sutton Association for the Blind. It welcomes people with visual impairment aged 18 - 50 and organises social events and outings on Tuesday evenings. For details telephone 020 8409 7166 email: suttassosblind@ukonline.co.uk There is also a self help Parents Group for parents of a blind or partially sighted child. Contact Sylvia at this number.

ART CLUB IN SOUTH EAST LONDON

First Fruits Saturday School is running an Art Club for children aged 4 - 10 with special needs at 374 Old Kent Road, London SE1 5AA. There are places 2 pm - 3 pm. Tel: 01767 683101.

CONTACT A FAMILY

The very active South West London office, which has offered activities in Merton, Sutton, Croydon, Kingston and Richmond boroughs, is to close at the end of September. In future, only Sutton will have a CaF office to which Jo Winsloe will transfer. The national helpline for CaF is: 0808 808 3555 www.cafamily.org.uk

EAST BERKSHIRE

The East Berkshire Down's Syndrome Support Group continues to send its Newsletter to your Editor. The September edition contains a wide variety of activities for its children and families including swimming, skating, fundraising, outings and educational information. Contact telephone number is 01344 305837.

LOCAL PARENT GROUPS

Local Parent Groups exist within the downsyndrome OK area (West, South and South West London, Surrey and West Sussex). Join the Parent Contact List or ask a trustee if you are seeking one.

PARENT CONTACT LISTS

These enable members to contact other members in the same locality. It is pleasing many dsOK members have asked to join and revised lists will be despatched as soon as possible. All on the lists are reminded to use considerately the information they contain. Contact the Editor with queries.

KINGSTON GUIDE

CaF newsletter reports a revised directory for Kingston. If your child is not on their Disability Register, tel. 020 8547 6587 for your free copy.

CHILDCARE FOR ALL?

Sophie Ugle, mother of a 12 year old with severe learning disabilities, has written an informative 13 page A4 report headed 'Thinking Big ... Childcare for All' which clearly shows that children with greatest need in Kingston Borough are largely excluded. Parents and professionals in Kingston and other Boroughs could find this useful. Copies from: Sophie at 140 Blagdon Road, New Malden, Surrey, KT3 4AL, tel. 020 8336 0795.

WILLING HELPERS

Following talks to Year 10 pupils at Wimbledon Girls' High School, two pupils asked how they could help. They would be very happy to help your young person with Down's syndrome with homework or practical activities while you spend time with other members of the family. If you live in Wimbledon or New Malden and would like to take up these offers, contact the Editor. The girls will count this as service for the Duke of Edinburgh Award Scheme.

BABY MUST CHEW

No apologies for repeating this vital hint for new parents. If a new baby with Down's syndrome is not chewing in their first year, it is probable solid food will be rejected and speech may never come. The chewing muscles are essential for speech.

DIFFICULT ISSUES

Every generation of parents has to cope with explaining the facts of life to their offspring. Our youngster with Down's syndrome has even greater need to understand these, partly because s/he may not be able to ask but also because children and adults with a learning difficulty are vulnerable. A detailed article in the Down's Syndrome Scotland autumn 'news' offers advice on tackling difficult issues including: 'Keeping an eye on the soap storylines can be useful'. A range of books, videos and CDROMs is listed. www.dsscotland.org.uk

KIDSACTIVE PROJECT

Pip News is produced twice a year by Kidsactive and promotes inclusive play and childcare (Play Inclusion Project). Seminars are planned to: "bring together policy makers and practitioners to share experiences, build on one another's good ideas and hear about new developments". Training is offered to support inclusion. Kidsactive, Pryor's Bank, Bishop's Park, London SW6 3LA or www.kidsactive.org.uk

ALLFIE

A parent member recommends supporting an organisation called The Alliance for Inclusive Education as it promotes children who are disabled being included in mainstream schooling. www.ALLFIE.org.uk

CROYDON GROUP

Parents in Partnership is a group of and for parents of a child with special needs or disability. Contact is our long-standing member Mrs. Daphne Jones 020 8657 1013.

MERTON GROUP

The Merton DSA Group continues to meet regularly. Contact Mrs. Caroline Lawless 020 8715 4411.

COFFEE INVITATIONS

Our secretary, Liz England, is looking forward to her coffee mornings continuing. All members are invited to her home from 10.15 am for coffee and chat, whatever the age of your child. The dates are: Friday 17 October and Wednesday 26 November. Westwood Avenue turns south off Woodham Lane (B385) or is less than a mile walk (across the canal!) from West Byfleet station.

PLANS FOR MAY 2004

Speakers on Wills and Trusts, Behaviour, Music Therapy, Sex Education and Social Development are being invited for this meeting. Your trustees will be pleased to receive ideas for topics from all our members.

THE NEXT VIDEO

During millennium year our Branch made a video entitled: Growing Up with Down's Syndrome ... Going to College. Fundraising has continued to enable a second video to be made in this series, its subject to be discussed by the trustees in January. Do pass on ideas and requests. (It can cost £1,000/minute to make a video). Going to College videos are still available (at only £5) from our Chairman or from national office. Make cheques payable to downsyndrome OK.

EXPLAINING DOWN'S SYNDROME

Our own children and their friends and classmates need to understand about the condition, Down's syndrome. On the back of last winter's DSA JOURNAL is a description of What does it mean to have Down's syndrome (£10.99). One of our trustees and her son, then 7, is featured and the book is strongly recommended for junior school children. It is well illustrated in hardback. An eight year old can enjoy reading it yet it includes information helpful to parents and professionals too. Published by Heinemann Library ISBN: 0431139350 and available in bookshops and on www.Heinemann.co.uk/Library (PSHE Citizenship/age 8-11). There are other books in the series.

HOLIDAYS FOR SPECIAL NEEDS

A list was recently compiled in response to an enquiry. It is believed these organisations welcome individuals with disabilities which may mean a young person can have a holiday without parents.
Calvert Trust (01434 256 232 www.Calvert-Trust.org.uk);
Holidays with Help (in Blackpool and Chichester) (020 8390 9752);
Winged Fellowship (five centres) (08453 451 970);
Uphill Ski Club (01799 525 406 www.cksb.freeserve.co.uk);
Jubilee Sailing Trust (02380 449 138);
Holidays for Disabled People (Southampton and Norfolk) (02380 668 177);
Share Music (020 8981 9405);
Orpheus Centre (Godstone, for music) (01883 744 664).
Some local authorities will provide and perhaps pay for a carer.

THE DOWN'S HEART GROUP

Many babies with Down's syndrome are born with a heart condition, often severe but usually operable. The children of many of our members develop well in spite of this poor, even alarming start to life. The national charity, The Down's Heart Group, has extensive information and advice for parents facing treatment for their child. Tel. 01525 220379. SPECIAL SCHOOLS

A summary of a report by a Special Schools Working Group is available from the Department for Education and Skills: 08456 022260 email: dfes@prolog.uk.com and quote DfES/0258/2003.

WELCOME, GILLIAN

We look forward to meeting Gillian Hayes, the new Development Officer for the part of our area outside Greater London. The work of these Officers is described in the DSA JOURNAL for Summer 2003.

NEW NOVEL

Down's Syndrome Scotland autumn News reports a new novel, Birds of a Feather, by Alan Balter in which a leading character, Richard, 19, has Down's syndrome. Strongly recommended by the reviewers. Order from Amazon.com and Publishamerica.com

DIARY DATES 2003/04

Saturday 11 October DSA AGM Kensington

Saturday 22 November Education Open Day for parents and education professionals - see booking form or www.downsyndromeOK.org.uk

Sunday 18 January dsOK trustees meeting

Sunday 14 March dsOK trustees meeting

Saturday 8 May dsOK Open Day and AGM

Current contacts for dsOK trustees