Down's Syndrome Association, South West Thames Branch

Newletter no. 28, February 1997

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
Several Branch members attended the DSA National Forum in November. The Information staff from National Office gave a fascinating presentation on the topics they are prepared to cover and the enquiries received. They create written material - often in response to frequent telephone calls on the same subject - produce the Newsletter, up-date information from research, give talks and trainings, act as advocates and liaise with other organisations. Thanks from the Branch for all that is done on our behalf.

Work of the Development Officer in Wales provided much food for thought. Main tasks include support to professionals, support to Branches across Wales and of course support to families. There will be more Development Officers across England in the next few years. Meantime, your Branch Committee is happy to continue to run information days for parents and extend a friendly hand to help and support members and others throughout the Branch area.

SHIRLEY QUEMBY, Editor

THE EIGHTH DAY

This film co-stars two award-winning actors, one with Down's syndrome, see page 13 in the Winter (No. 82) DSA NEWSLETTER. If you haven't managed to see it yet, it will be screened at the Secombe Centre, Sutton, Surrey, at 7.45 - 10 pm on Wednesday and Thursday 26th and 27th February. The Secombe Centre is on the Cheam Road, A232, just west of Sutton High Street and close to the Gibson Road multi-storey car park which is free after 6 pm. It is a short walk from Sutton station. Box Office 0181-770 6990. Leaflet enclosed for members in the area. Details from Shirley Quemby (see Committee list). We understand the film has a sad ending but is well worth seeing.

BRANCH MEETING

Remember the Branch parent information day and Annual General Meeting will be on Saturday 26th April this year instead of on a Saturday in May. Sited near the centre of our Branch we hope to welcome many members, friends and professionals at Horsham on that date. The programme will be sent to all Branch members during March. (Make sure your membership subscription is up-to-date at National Office or we might not get a label for your copy!).

PROPOSED BRANCH VIDEO

There was a helpful response to the Branch Committee's proposal (detailed in the September Newsletter) to create an informative video which could be helpful to parents and to professionals in medical, social and educational fields and to Police, Libraries and so on. Jim Cowie, our Branch Treasurer will be pleased to receive further ideas and offers from anyone else (see Committee list).

BRANCH HON. SECRETARY

The Branch is still in need of a volunteer to fill this important post. It would suit a parent whose child with Down's syndrome is at school. Jill Palgrave or a Committee member will be happy to discuss the commitment with you - or you could cast your eyes back to Branch Newsletter No. 26 - last July - for a detailed description. It is not arduous but it is important.

DSA BANNERS

The Branch Committee has agreed to purchase twenty professionally made banners, 7 ft 6 in x 3 ft approx., which are now available for selling on to Branches and Groups throughout the country. Mrs. Maggie Almrott (see Committee list) is the person to contact if you wish to purchase. The cost is £32 each including VAT and p&p and complete with eyelets and integral cords. With your cheque (payable to the DSA SWT Branch), send your address, a contact telephone number and the date on which the banner will be required if applicable. For hire only, send the full amount and all but ±4 will be returned on safe receipt of the loaned banner.

THE TRANSITION TO ADULTHOOD

The Conference "Rights of Passage - the transition to adulthood for people with learning disabilities" at St. George's Hospital Medical School last October was attended by several Branch parents. The day provided much food for thought and constructive advice. Clearly we must spend time over many months, even years, preparing our young person for any planned change - whether it is a move to a new school, a residential College or a different home environment. We must never assume that they will foresee and adapt quickly to the hundreds of changes in their lifestyle which are easy for us to anticipate.

Notes I made during the talk "Why This Topic? - The messages from Research" by Philippa Russell, Director, Council for Disabled Children, who herself has two children with special needs, include the following: Many parents may have slipped out of groups and be isolated; parents of children with behaviour problems may feel particularly excluded; removing people with learning difficulties from a risky situation is not necessarily the answer; parents need to be involved, as do their children many of whom did not understand their disability and consequently suffered from lack of self esteem; many young people felt nothing could be kept confidential; some people with a learning disability felt a heavy burden to 'be good'; young people need each other; they do not understand why education matters; they need a Record of Achievement.

Additional relevant comments were made by Katie Drummond, Senior Lecturer of Psychiatry of circles of relationships Disability & Honorary Consultant Psychiatrist, St. George's Hospital Medical School: there is a high incidence of depression, fearfulness and lack of confidence amongst adults; parents and schools fail to encourage independence; ignorance about the facts of life; people felt they were treated as problems; users' needs don't fit services; no one agency is responsible for co-ordination.

During the afternoon a group of Americans with their parents explained how a house near Boston had been bought in 1983 and the young people had learned how to look after themselves. Each resident owns his/her own bedroom and shares ownership in the common parts of the house. Many have their own mortgages while for others their parents have bought their property. Federal assistance is available for those unable to find the mortgage. Other houses have since been opened. In the USA the benefits of a home of one's own, as generally understood - freedom, privacy, mobility, independence - are now a fact of life for an increasing number of people with learning difficulties.

The speaker who perhaps impressed me most was Lynne Elwell, a dynamic parent with almost no hearing who had set up with friends a "Circle of Support" for her child with a learning disability. From an early age all of us have built up a network of friends and colleagues - people we can turn to for advice, reassurance or celebration etc. Our young person with a learning disability might have difficulty doing this but has in many ways a greater need of such a circle than the rest of us. Lynne drew four circles of connectedness.

She recommended that people with an interest in our offspring - whether family, professional, personal friends, a respite carer, specialists in education, spiritual matters or other interests - should meet regularly (monthly) and get to know them, their likes, dislikes and talents and their hopes, dreams and ambitions. Together they can gradually help the person with the learning disability to achieve a good quality of life. The brief report and sample agendas for Circle meetings is in the Conference report.

It is possible the eighty-eight page A4 report of the Conference "Rights of Passage" (Wednesday 16th October 1996) may still be available from the Conference Unit at St. George's Hospital Medical School (0181-725 5534 between 11 am - 4 pm Monday to Friday).

FURTHER EDUCATION

'Paperchase', the newsletter of Disability Information Surrey, reports a new book which could be relevant to the families of many of our young people now at secondary school level. The book is entitled FURTHER OPPORTUNITIES - Learning Difficulties and Disabilities in Further Education by David Johnstone, published by Cassell at £12.99, and apparently examines how further education for students with learning difficulties and disabilities has emerged from an essentially elitist education system. The book explores aspects of teaching and learning, tensions between further education and employment opportunities and a cross-cultural perspective on attitudes and provisions. (Perhaps it would be available at your local Library - Ed.).

BOOKS BEYOND WORDS

There are now more than a dozen titles in this excellent series, all designed to help people with limited comprehension to understand feelings experienced as they grow up. For order form and details contact Mrs. Freda Macey, Department of Psychiatry of Disability, St. George's Hospital Medical School, Cranmer Terrace, London SW17 0RE, tel. 0181-725 5501. These full colour picture books provide an effective and invaluable counselling tool, assisting people to adjust to change, to accept themselves, to enable them to have satisfying relationships and to make their own decisions. They also help carers in finding a way to deal with sensitive topics.

EDUCATION ACTS

The November 1996 Newsletter of "Partnership with Parents in Kent and Surrey" states: The Education Act 1993 is to be repealed on 1st November 1996. From that date the law on special education will be contained in the Education Act 1996. This is a consolidating Act which brings together a number of Acts of Parliament relating to education including the whole of the 1944 Education Act and the 1993 Act. The New Act incorporates the Nursery Education and Grant Maintained Schools Act as well as recent amendments to the 1993 Act made by the Disability Discrimination Act 1995 but there are no changes of substance to the law. However, section numbering in the 1996 Act is not the same as the 1993 one thus, for example, the definitions of 'special educational needs' and 'special educational provision' are no longer to be found in Section 156 of the EA 1993 but in Section 312 of the EA 1996.

EDUCATION INFORMATION

The Devon & Cornwall Branch Newsletter VIEWPOINT reports a well-attended conference on education from which it emerged strongly that teachers and class assistants need more practical ideas of things to do and make for use in the classroom, examples of differentiation of the curriculum for children with Down's syndrome in mainstream and regular meetings with other professionals for sharing ideas and experiences. Do readers feel the Branch should be taking action to help professionals in our area and if so in what form?

KUMON MATHS

An inspiring workshop at the DSA AGM in Birmingham introduced members to the Kumon Maths system, a finely graded system which ensures students never reach a mental block. At the particular class featured, children with Down's syndrome are progressing so well that they are able to help other children in their mainstream maths classes! The teaching of maths Kumon-style is at a rate to suit each individual student, of whatever age or ability, by doing a little set work each day (even on Christmas day!) and gaining great pleasure from success. It is quite expensive and relies on a specially trained teacher having chosen your area in which to set up the twice-weekly class which is run like a club. The system has been available in this country for about five years having been founded in Japan in 1954. Tel. 0181-343 3307 for your nearest Kumon Study Centre.

SUTTON BOROUGH SUPPORT FOR PARENTS

The London Borough of Sutton Special Educational Needs Department has written to the Branch describing support available for parents whose child is going through Statutory Assessment. Two evening meetings per term are being held at the Glastonbury Centre, the next scheduled for 7.30 pm - 9.30 pm on Tuesday 4th March. A Drop-In Session will take place in the Times Square Child Care Information Centre at 12.30 - 2.30 on the same day. New leaflets of interest to parents with a child with Special Educational Needs are being published and will be available in Libraries and Clinics throughout the Borough. Jo Flynn (0181-770 6557) is the Parent Partnership Co-ordinator.

READING BEFORE TALKING

Professor Sue Buckley has published through the University of Portsmouth the summary of her study over 16 years of improving the speech of children with Down's syndrome through speech. Having started this ourselves when our son was three in 1974 it is fascinating to see how the documented research begun in 1979 confirms and expands on the value of this method. This all came about because Leslie Duffen, father of Sarah who has Down's syndrome (and a driving licence), taught her to read with flash cards when she was very young twenty-five years ago. This report will be placed in our Branch Library.

MAKATON WAS THE ANSWER

Any reader doubtful whether or not to introduce your baby or child to Makaton sign language should read the excellent article by Anna Gyöngy in the Scottish DSA Autumn NEWS. This mother reports her immense efforts, when living in Hungary, to find a way for her non-speaking little girl to communicate. The beautifully described incidents, in various countries where she and little Panka have lived, will convince any sceptic that the gift of communication through Makaton should never be withheld. Panka is now 8 and throughout has shown remarkable comprehension and memory which would not otherwise have been recognised while she had no speech. So much pleasure has been shared through communication and so much frustration avoided.

REPETITIVE AND PROBLEM BEHAVIOUR

The Branch is indebted yet again to time given by Dr. Olwen Wilson to speak to a large gathering of parents at our November Branch meeting at Stoughton near Guildford. If you were unable to be present, and there is problem behaviour which you wish to avert or extinguish, Dr. Wilson's "A B C" method could help. "B" is the behaviour which causes concern. Write it down under "B". "A" is the Antecedent. List under the "A" column any activity, 'encouragement' or 'motivating factors' which you notice which could be leading to the undesirable behaviour. Under the "C" column you must list the consequences. With observation, thought, discussion with others involved, you could discover the antecedent, or cause, which it might be possible to obviate in future. It is never easy curing anyone's behaviour problem - it often gets worse before going away - and it is particularly difficult for the mother to stick to a plan. When the unwanted activity is replaced with something better sincere congratulations are in order for this achievement!

Dr. Wilson offered the following advice for parents whose child doesn't manage to stay dry all night. Set up a good habit including taking the child to the toilet immediately after meals. Don't wait until the child needs to go. Teach 'sleepy wee' i.e. get the child out of bed to go to the toilet lots of times. Mark up a tick for doing even a drop. (Rewards should be for what the child does not what s/he does not do - the dry bed itself will be the reward for not wetting). If the child is wet in the morning, get him/her to go to the toilet then back to bed. If it is wet, allow an old towel for covering the wetness but don't have the child into Mum's warm dry bed.

CALVERT TRUST HOLIDAYS

The Calvert Trust has been providing holidays for the disabled in Northumberland for some years and has a good reputation. A centre in North Devon, the Exmoor Calvert Trust, has now been opened and their brochure offers a wide variety of challenging activities for recreational and therapeutic purposes. Individuals, with or without carers, and families are apparently welcome. For full details and their 1997 tariff contact: C.C.B.Willis, Project Administrator, Calvert Trust Exmoor, Wistlandpound, Kentisbury, Barnstaple, Devon EX31 4SJ (tel. 01598 7763221).

L'ARCHE COMMUNITIES

The aim of L'Arche is to create communities which welcome people with learning disabilities. The first L'Arche community was founded in France in 1964 and there are now seven in the UK. For further information: L'Arche UK Secretariat, 10 Briggate, Silsden, Keighley, West Yorkshire BD20 9JT, tel. 01535-656186.

CONFERENCE ON RESPITE CARE

The Scottish Down's Syndrome Association Autumn NEWS reports their conference on the subject of respite care entitled Taking a Break. Speakers emphasised the benefits to parents, siblings and to the young person with Down's syndrome which arise from this method of broadening and sharing the experience of caring. The point was made that parents should not feel their request for respite care was a sign of weakness or failure but that it was a service which helped them to care better. It encouraged greater independence, helped the parent to learn to 'let go' and provided a known face in case of an emergency.

THE CARER'S ACT

A new leaflet from the Carers National Association, Ruth Pitter House, 20/25 Glasshouse Yard, London EC1A 4JS (tel. 0171-490 8818) explains the Carer's Act and the right that a carer now has to an individual assessment of their needs. The leaflet is called Looking after a relative or friend? There's a new law to help you.

DEMENTIA RELIEF

The Dementia Relief Trust, Pegasus House, 37-43 Sackville Street, London W1X 2DL (tel. 0171-333 8115) is a new national registered charity established in order to assist people with dementia and their carers. The Trust has produced a report "The Care Must be There" on improving services for people with young onset dementia and their families. Send a strong A4 self addressed envelope with £1.05 postage for a copy.

DATES FOR YOUR DIARY

Sunday 9th March Branch Committee Meeting
Saturday 12th April DSA Under 5's Conference, Solihull
Saturday 26th April Branch Information Day and AGM, Horsham
Saturday 17th May DSA Transition to Adulthood Conference, Birmingham

MEMBERSHIP

DSA Chairman, Carol Boys, is concerned that, although there are estimated to be around 40,000 people with Down's syndrome in Britain, our national membership is only around 5,000 families. In order to give our officers strength in their dealings with the powers that be, we are all asked to make efforts to increase the Association's membership. It is in the interests of all our youngsters with Down's syndrome to do this. We are invited to talk to anyone we know who is not a member although they have a family-member with Down's syndrome to explain the importance of increasing DSA membership. Grandparents and other family members may be asked to take out Associate membership to underline their support.

SUTTON DSA SUPPORT GROUP

It is good to hear this friendly Local Parent Group continues to meet for coffee and chat. All meetings are at the home of Suzanne and John (134 Mulgrave Road, Cheam) at 8 pm. Dates planned are: Thursdays 13th March, 8th May and 3rd July. Details 0181-642 1045.

SUTTON TOY LIBRARIES

All Sutton Borough libraries have Toy Libraries for children aged 0 - 8. Toys may be borrowed for up to three weeks on Borough Library tickets. Full details from Borough libraries.