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

Newsletter no.31, Autumn 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,

Lunching with several hundred members at the DSA AGM in Birmingham I experienced once again the joy of being amongst so many positive, cheerful families with babies, toddlers, schoolchildren and adults with Down's syndrome all taking part and 'belonging'. If your baby is new, or going through a patch of slow development, take heart from the knowledge that there are countless families who share your disappointments but have persevered and achieved levels of happiness similar to that of many other parents. We are all here for each other to be contacted if another parent's listening ear will help you through.

Shirley Quemby (Editor)

VITAMINS AND MINERALS

Parent member, Peter Elliott, has founded The Down's Syndrome Research Foundation and has organised two important conferences to help parents to decide whether their child should receive food supplements. Over 15,000 children with Down's syndrome in the USA are said to use Targeted Nutritional Intervention. Many parents and medical professionals in this country will want to know why. Neither Peter Elliott nor The Down's Syndrome Research Foundation has any financial interest in the sale of Targeted Nutritional Intervention but there are many parents in this country convinced that our children with Down's syndrome need vitamin and mineral supplements to lessen the effect of the extra chromosome.

Both conferences are entitled: Targeted Nutritional Intervention and Research to Improve the Outcome for Children with Down's Syndrome and will take place at 9 for 9.30 am - 4.30 pm. as follows:

Professionals Conference Friday 14th November 1997 (accredited by The Royal College of Paediatrics and Child Health with 5 CME Credits) at The Institute of Child Health, 30 Guildford Street, London (nearest Underground Russell Square).

Parents Conference Saturday 15th November 1997 at Regents College, Regents Park Inner Circle, London (nearest Underground Baker Street).

For full programme and list of highly qualified speakers, together with membership details of the new organisation if required, tel. 01494 521826 (or Leo on 0181 668 4860) (fax 01494 441524).

THE ALESSENDRE SPECIAL NEEDS DANCE SCHOOL

Many members will remember Angelina's dancers both at Crawley and at a November meeting at Cheam when we watched enthralled. Angelina continues to teach the young people of many of our members and now holds a class for those aged 17 - 28 weekly in Battersea. The class is gymnasts

seeking people with Down's syndrome 'with some talent and in reasonably good shape'. The Saturday morning class at Hammersmith for beginners and younger ones continues. The fun and discipline at these classes (for both sexes) have led to improved intellectual and social skills together with the gradual development of good posture, balance and co-ordination. Ring Angelina Alessendre: 0171 585 2431 for details.

See them perform at the Wandsworth Arts Festival on Saturdays 15 and 22 November at 7.30 pm at The Royal Academy of Dancing, 36 Battersea Square, SW11. Please telephone 0171 585 2431 to reserve your tickets. Early booking will be particularly beneficial to the dancers and is strongly recommended.

DISS NETWORK

The Disability Information Service Surrey - a unit of the Queen Elizabeth Foundation for Disabled People - offers five telephone contact numbers and is available in Ewell, Guildford, Redhill, Staines, Woking, Camberley and Horley libraries. The DISS Dorking tel: 01306 875156.

RESPITE CARE FUNDING

Paperchase, Disability Information Service Surrey's publication, summarises a report by Action for Carers (Surrey) describing additional services to be funded for respite care for various people's needs across Surrey, to be brought in in phases. Further information from John Bangs, Surrey Social Services, 0181 541 9675. Action for Carers can be contacted at Astolat, Coniers Way, Guildford, Surrey GU4 7HL, tel. 01483 302748.

ASTHMA INFORMATION

A note in DISS Paperchase for October 1997 reports that the National Asthma Campaign has produced a new magazine for young people, factsheets for parents, and board and computer games. Some of these could perhaps help a child with a learning difficulty to understand the effects and care of asthma. NAC, Providence House, Providence Place, London N1 0NT, tel. 0171 226 2260.

DOWN'S HEART GROUP

This nationwide charity provides an invaluable service to parents whose child was born with a heart condition. National office: 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379. London and south contact: Katie Spall, Ormonde, Henley Down, Battle, East Sussex, TN33 9BT, tel. 01424 830594

RARE BREEDS CENTRE

Thank you to the reader who showed the Branch July Newsletter article to the Promotions Manager, Mrs. Margaret Hanlon, at the South of England Rare Breeds Centre in Kent! It is always good to receive feedback and Mrs. Hanlon has written to update the prices quoted in our article and to announce winter activities. On your first visit this winter ask for their Winter Wonderticket (for amazing vanishing prices) and get in more cheaply each time you visit between 8th September 1997 and 31st March 1998! Closed Mondays October - March. On 16th and 17th November there will be a Christmas Gift Market and on 15th and 22nd December Carols in the Barn with the Salvation Army Band. The centre lies between Ashford and Tenterden, a mile from Ham Street station. Details from the Canterbury Oast Trust 01233 861493.

JIMINI TUMBLING FOR UNDER 5s

A parent member in Ealing has recommended this class which is run by Jane Loukes who has herself now joined the DSA. Jane contributes the following description of her activities together with a donation towards Newsletter costs. She reports that this lively, stimulating class specially for children with Down's syndrome uses beautiful, bright soft play and gymnastics apparatus to encourage movement, develop confidence and give extra attention to hip muscles necessary for balancing, climbing or running. The children are accompanied by their parent or Jimini Tumbling Address

carer who is actively involved in the class. Jane Loukes, who teaches the class, is a qualified gymnastics coach with many years experience with children with special needs. She has received advice and support from her local physio and occupational therapists. Parents of children already in the group seem very keen to give their children the chance to try things which may be daunting in a mixed ability setting.
Contact: Jane Loukes, 0181 840 3355, 99 Oaklands Road, Hanwell, London W7 2DT

The classes run in term time only and children are booked in either for a couple of classes (£7) or for the term (£41). If you would like to know more, do please ring Jane on 0181 840 3355 and she will be delighted to try to help.

HELP! HOW CAN I ... ?

Make sure my child takes his/her vitamins and minerals

Simply explaining the need and giving by mouth will work with some children.

Crushing with a knife handle in an egg cup and disguising in a strong flavour such as Bovril or peanut butter is suggested by Rex Brinkworth MBE, Association founder. (Remember Vitamin C is destroyed by exposure to heat and light).

A Committee member uses pestle and mortar and Marmite.

This is an occasional series for which ideas - problems or solutions - are invited.

DSA EYE-CATCHING BANNERS

The notice in DSA NEWSLETTER Spring 1997 aroused much interest and most of the Branch's 20 (7ft 6in x 3ft) banners have now been sold at cost to member groups around the country. A further 20 will be ordered at no extra cost if, by the end of February, sufficient firm orders are received. Contact Mrs. Maggie Almrott (see Committee list) for details.

BRANCH HON. SECRETARY

With warm thanks to Jill Palgrave and her family for her long service to the Branch, especially as Hon. Secretary for the past 3¸ years, we send our sincere good wishes. We now welcome Maxine Hanson and her delightful little son, Ben, who will no doubt be an excellent assistant to Mum as she takes over as Branch Hon. Secretary from 1st October 1997. Her address and Branch telephone number are on the reverse of this Newsletter.

DSA DEVELOPMENT OFFICER

Although Rosalind Chislett has only 17¸ hours per week in which to 'develop' most of the South East corner of England, our Branch is delighted to welcome her. Rosalind was Newsletter editor for the old South East Branch from 1986 and its last Vice-Chairman before the Branch divided into four in 1989. Rosalind then chaired our South West Thames Branch for three years and your Committee is looking forward to working with her again. (Rosalind was previously known as Rosalind Grahame). Rosa-lind's middle daughter, Emily, is 18 and has Down's syndrome and other special needs.

DSA MEMBERS IN CONTACT

From time to time, a form has been published in the Branch Newsletter inviting parents to complete it so that they can be put in touch with other members. Support in this way can be beneficial for a number of reasons and could lead to the formation of a local parent group in an area where there is little other contact between parents. Parent groups can be simple occasional informal chats over coffee or regular meetings to which speakers are invited - or any other form preferred by its members. Guidelines on creating a local group are available from Rosalind Chislett. Every DSA group receives from National Office the monthly Bulletin which often includes helpful information for parents.

Readers who have completed a Contact Form in the past will find an up-dated list of local members enclosed. Please complete and return a form if you would like to be a part of this friendly and often useful network. Be sure to tell Shirley Quemby of any corrections or if you wish to come off the list.

BRANCH PARENT INFORMATION DAY

The date and place for our open meeting for parents and professionals are fixed, speakers are being arranged, so please put the date in your new diary and resolve to come along, meet other parents and find out information which will help you and your youngster in the months and years ahead. Your presence also helps other parents as we all benefit from contact with each other. Saturday 25th April 1998 at Woodlands School, Leatherhead, 10 - 4. Two past Branch meetings have been held there. Creche accommodation is good (though not unlimited!). New Committee member, Alan Mayne, will provide P.A. equipment. Education, music therapy, mathematics and Benefits are probable topics - do contact Rosalind or a Branch Committee member if there is any problem which you feel could be helped at the meeting.

BRANCH VIDEO

Your Branch Committee is still working on the possibilities of producing an informative video on Down's syndrome. Jim Cowie (see Committee list) would love to hear from you if you have ideas, offers of expertise or simply enthusiasm to help to make it happen.

DEPRESSION ?

The signs and symptoms of depression can be easily mistaken for other less serious problems. If caring for a teenager or adult with Down's syndrome, be aware that depression occurs more frequently in people with learning disability than generally. Depression can follow changes for which the person concerned feels unprepared e.g. loss of a dear one, new occupation, home or even staff, perhaps made worse if the person's ability to explain or question is restricted. If untreated, permanent deterioration in the person's abilities and personality can occur. Understanding causes and symptoms of depression will help in prevention, diagnosis and limiting of longterm effects. The DSA has published a small but comprehensive leaflet entitled DEPRESSION IN PEOPLE WITH LEARNING DISABILITY which is available for s.a.e. (DL size) from The Royal College of Psychiatrists, 17 Belgrave Square, London SW1X 8PG.

DOWNSEd

The history and work of the Portsmouth Down's Syndrome Trust were ably described by co-founder and parent Sue Buckley at the DSA National AGM in October. Members wishing to learn about membership or publications will find the Trust at: The Sarah Duffen Centre, Belmont Street, Southsea, Hants, PO5 1NA, tel. 01705 824261.

DSA INFORMATION SHEETS

One advantage of attending the National AGM at Birmingham was the opportunity to see recent DSA publications. Information sheets, each on several A4 pages, include:

AGEING AND ITS CONSEQUENCES FOR PEOPLE WITH DOWN'S SYNDROME,
BENEFITS AT SIXTEEN,
ORGANISATIONS OFFERING RESIDENTIAL ACCOMMODATION TO PEOPLE WITH LEARNING DISABILITIES,
PREPARATION FOR MENSTRUATION .... and
SENgate (about special educational needs provision and LEA budgets). National Office would no doubt appreciate a stamped envelope to send you a copy.

DATES FOR YOUR DIARIES

1997

Friday 14th November TDSRFL Conference for Medical Professionals (see front page)
Saturday 15th November TDSRFL Conference for Parents and Carers
Saturdays 15th and 22nd November Pupils from Alessendre Special Needs Dance School performances (see front page)

1998

Sunday 18th January Branch Committee meeting, Horsham
Sunday 22nd March Branch Committee meeting.
Saturday 25th April Branch Parent Information Day and AGM, Leatherhead

DSA TRUSTEES

Branch member Shirley Quemby and ex Branch member Ann Hutchinson will be amongst those steering the DSA during the coming year. All those nominated were elected on 11th October.