Newsletter No.34, September 1998

 You will find this edition is full of action - the action to be undertaken by you, the readers, please! First, please make sure your family is free for the Fun Day and Fair on 14th November and fill in and post the enclosed invitation.  It shouldn't clash with fireworks so no excuses! Second, Jennifer Ellis needs to hear from you for her 'A' Level project. Third, please read carefully the Down's Syndrome Research Foundation's request for children to form part of very much needed research. Many members give their children Vitamins C and E, others give them the American Targetted Nutritional Intervention, and all of us when asked have to admit that research so far is incomplete.

 As the summer draws to a close look back on the holidays and call to mind the small or large steps in progress that your child has made, perhaps because s/he was in different surroundings, or someone else let him/her do something you felt might be too difficult. The break from routine is often a good opportunity to open up new horizons for our children who benefit from extra guidance and teaching. If this has been your first summer with a youngster with Down's syndrome, we welcome you into the Branch and look forward to meeting you or hearing from you.

 SHIRLEY QUEMBY, Editor

 TEETH
An experienced dentist will be speaking to us at our Branch AGM in April about the development and care of our children's teeth. A note in the Scottish DSA NEWS recommends that we clean teeth with our children when they are relaxed - once a day thoroughly is better than twice a day in a rush. Sitting or standing behind the child could be a good position, or even suggest the child lies on a beanbag or with their head in your lap. The dentist should be informed if the child has any heart problem. For the full picture - and there is much to learn - note the Branch meeting in your diary and join us on Saturday, 24th April at Purley, Surrey.

 BRANCH VIDEO

 Work continues apace and an outline of its contents now exists. Branch Hon. Treasurer, Jim Cowie, will be pleased to hear from members interested in this worthy project and anyone with ideas for funding it.

 BEHAVIOUR - AGAIN

 We are delighted that Dr. Olwen Wilson has agreed to talk to us again on behaviour training. She has a wealth of experience and a warm understanding of children, especially ours. Note the date, Saturday 24th April, and be sure to keep up your DSA membership so that you receive our notice of meeting early next year.

 HOMOEOPATHY
It will be good to welcome Sue Brooks, past Director of the DSA, to our parent information day on Saturday 24th April. Sue will be leading a workshop on homoeopathy.

 TAPED TALKS
Alan Mayne is still offering tapes of the two superb talks given at our Branch meeting last April. The music therapy and Kumon maths presenters included much sound advice for parents and teachers of children of all ages and abilities.

 A NIGHT AT THE CASBAH
There are still tables available. It is hoped commercial organisations will book for their Christmas entertainment. Yes, and prizes are still required please. Contact Ros Chislett (see Committee list) or Sarah Waights at National Office. We are sure those who attend will have a brilliant evening - and for such a good cause, too!

 BRANCH FUNDS
The Branch continues to spend more than its income. Whilst parents are not expected to be fundraisers, we know that some of you enjoy doing this. When you do, please remember the Branch! Our Branch runs meetings for you and supplies you with Newsletters free of charge. A video is being planned and an information leaflet or poster on pre-natal screening. Do give your views on these to Committee members who are all doing their best on behalf of present and future babies, children and adults with Down's syndrome.

 Our Hon. Treasurer offers a new service. When your family and friends decide to make donations to the Association instead of buying flowers for a funeral or birthday or anniversary presents, Jim Cowie will add up all the donations and send a card of acknowledgement to the family member who notifies him that this has been arranged. If you ask that the money be passed to National Office he will do this but remember the Branch receives no part of your annual subscriptions.

 BANNERS
The Branch owns strong white and green 7 ft. 6 in. DSA banners which are sold to other Branches (at cost) or hired out. If you require one for a special event or to buy, talk with Mrs. Maggie Almrott.

 KARAOKE MACHINE
Several groups within our Branch area, and the Branch itself now all own DSA Karaoke machines for the benefit of members. These can be used to hire out for fundraising, or for fun. An important use is the encouragement and improvement of our children's speech and language. To borrow the Branch machine, contact Jim Cowie who will be housing it and keeping records of loans. It should normally be returned within one month.

 SHOCK DAMAGES
Parents of a child with Down's syndrome born in 1991 have apparently been awarded £300,000 because they felt the Glasgow Royal Maternity Hospital should have carried out an amniocentesis on his mother, now 33. Her brother was born with Down's syndrome 29 years ago and a test at the time showed that she had a chromosome problem. This information was apparently ignored by the hospital and her GP. The Scottish DSA is reported to have been concerned about the possible effects of the case on people with Down's syndrome whom it appeared to devalue: "People with Down's syndrome are very capable, they have lots to offer. Down's syndrome is a small part of them." We can only hope that by now the parents have discovered this for themselves.

 BRANCH HON. SECRETARY
The Branch is still managing without an Hon. Secretary. Instead, Development Officer for the South East of England, Rosalind Chislett, is acting as our main point of contact. With her extensive knowledge and experience she finds herself able to help all callers and we are most grateful to her. She has rarely missed a Branch Committee meeting and you will meet her at our Fun Day and Fair on Saturday 14th November.

 BRANCH AREA
When the DSA South West Thames Branch was formed from the old South East Branch, some of the postcodes north of the Thames were included. It is intended in the next few months to discuss with DSA North West Thames Branch whether amendments to our boundaries are needed. If you have any views, please convey them to Ros Chislett or Mark Anderson.

 DSA SUTTON SUPPORT GROUP
Parents of a baby or young child with Down's syndrome are welcome at Sutton's friendly bi-monthly group meetings. Informal chat is the programme at the home of Suzanne and John, 134 Mulgrave Road, Cheam (just west of York Road) at 8pm on Thursdays 12th November, 14th January, 11th March, 6th May and 1st July. Telephone beforehand to check: 0181 642 1045.

 CALLING CHISWICK!
Ros Chislett has been asked if there is a parent group in Chiswick (London W4). Please contact her if you know of such a group or would like to join one.

 PARENT CONTACTS
Members who would like to know how to contact parents in their area may ring or write to Shirley Quemby to ask to join the Branch Parent Contact List. Local Groups/Branches are invited to publicise their meetings in the Branch Newsletter. Ros Chislett is the person to contact if you would like to form a Local Group/Branch.

 YOUTH LINE
A new help line for bereaved children and young people has been set up by Cruse, providing the opportunity for the bereaved young person to talk through their experience with a trained counsellor. Tel. 0181 940 3131 Fridays 5 - 9 pm and Saturdays 11 am - 6 pm.

 THROUGH THE ROOF
This is a Christian disability charity which renovates secondhand wheelchairs for countries where they are not available for many who need them, and is working to ensure churches are welcoming to people with any disability. Through the Roof, PO Box 178, Cobham, Surrey KT11 1YN. tel. 01932 866333.

 BENETTON ADVERTISEMENTS
The latest Benetton advertisements show people with learning disabilities. Please convey to Ros Chislett any comments you hear and your own views. 

MEDICAL RESEARCH
Thirty children with Down's syndrome and 30 siblings, all aged 2 - 14, are needed for a very important study initiated by the Down's Syndrome Research Foundation. The work will be supervised by Professor Rice-Evans and Professor Halliwell at Guy's Hospital, London.

 Background: Every person with Down's syndrome has an extra set of genes in the 21st chromosome (Trisomy 21). We all have two sets of genes totalling about 100,000. Trisomy 21 results in an extra 200 genes approximately. Genes produce chemicals called proteins and one of the genes in the trisomy is known to be responsible for 50% over production of superoxide dismutase. SOD is an essential part of the auto immune system that keeps us healthy and free of disease. The 50% over production of SOD in Down's syndrome is believed to cause problems with the immune system. Elevated levels of peroxides are seen to be present in the bloodstream in Down's syndrome and these are linked to increased free radical activity. Logically this will result in increased damage to the cells throughout the body and damage to the DNA within each cell. When the DNA is damaged, chemicals to effect a repair are produced by the cells and when these are measured they are called biomarkers of oxidative damage.

 The Project: Blood samples will be taken from the children over a 3 month period. This will be a single blinded study not likely to be influenced by the opinions of the researchers. The antioxidant status of all the children will be assessed and trials will be conducted to test the effectiveness of several antioxidants in preventing free radical activity and reducing DNA damage.

 Please contact the DSRF, 18 Daws Hill Lane, High Wycombe, Bucks, HP11 1PW tel. 01494 521 826 (fax 01494 441 524) if you would like more information or your children to be considered for taking part. This is vital work for the benefit of your own and future babies and young children, and perhaps the older children and adults too. 

ALZHEIMER'S DISEASE
It is unfortunate that this is a subject of which we should be aware as our offspring with Down's syndrome reach adulthood because there is a genetic link between one type of Alzheimer's disease and chromosome 21. Only 1 in 10 of people with Down's syndrome under 50 are likely to develop dementia, 55% of the 50 - 59 year age group and around 75% of those over 60. Being aware of the signs ensures the best support if ever needed.

The DSA published in 1995 a booklet Down's Syndrome and Alzheimer's Disease (A Guide for Carers) by Richard Marler and Cliff Cunningham (£2.50). The Scottish DSA (see under "HEALTH CHECKS") offers Down's Syndrome and Dementia by Diana Kerr, published by Venture Press 1997 @ £9.95. A training guide for those working with people with Down's syndrome and dementia, Different Realities (Cairns & Kerr) is available from the Scottish Dementia Services Development Centre, University of Stirling, FK9 4LA, tel. 01786 467740. In 1995 the Scottish DSA published a short booklet What if it is Dementia?.

 PLEASE HELP JENNIFER
Jennifer Ellis has two relatives with Down's syndrome and needs interesting statistics for her 'A' Level Maths project. Please send her a note of the sex of your baby/child/adult with Down's syndrome, the age of Mum and Dad when baby was born and where s/he came into the world. Jennifer would like the County if in this country, or the name of the country if baby was born elsewhere in the world. She will make graphs and pie charts of her findings and will allow us to publish some of these next year. Your reply can be anonymous if you wish, by post or phone. Miss J.M. Ellis, 70 The Street, Fetcham, Leatherhead, Surrey, KT22 9RF, tel. 01372 372594. The results will be of interest to all of us (e.g. are there more boys?)

 EARLY INTERVENTION
Parent member, Jane Grantham, reports on an Early Intervention Group for Children with Down's Syndrome in Chelsea. Established two years ago in a nursery school, along the lines of early intervention as practised in Australia, the group is staffed by therapists from The Sarah Duffen Centre, Portsmouth, and supplemented by Drama Workshops run by The Polka Theatre Co. and Strathcona. The age appropriate classes of no more than 5 children meet every Wednesday. The groups are primarily for education, speech/language and social benefit for the children. It is not a support group although it is hugely supporting to have weekly intervention, on a specific programme, run by experts. It is fee paying but non-profit making. There are two places available for this term. Ring Jane on 0171 736 0102 for information if you are interested. 

HEALTH CHECKS
The Scottish DSA has worked with a group of clinicians to develop UK Guidelines for Basic Medical Surveillance Essentials for People with Down's Syndrome. A leaflet summarises its advice. A copy of the leaflet, and the Guidelines, is available free from SDSA, 158/160 Balgreen Road, Edinburgh EH11 3AU tel. 0131 313 4225. No doubt a donation would be welcome as the SDSA is a separate charity from the DSA.

 PIECE BY PIECE
This video is recommended by a Scottish DSA member. It is a comprehensive guide to sexual health for people with learning difficulties produced by West London Health Promotion Agency. Full price nearly £60 but only £30 for schools, service user and advocacy groups. To order, tel. Pavilion Publishing 01273 623222 for a copy of their catalogue. 

ACTION AGAINST ABUSE
The Association for Residential Care has produced a helpful leaflet listing publications available to help with this important but perhaps unwelcome subject. For information send DL s.a.e. to ARC House, Marsden Street, Chesterfield, S40 1JY, tel. 01246 555043.

 SWIMMING STAR
Congratulations to Philip Jones who swam for Croydon in the London Youth Games disabled section and won a bronze medal for 50m freestyle. His photograph, taken at the vast Crystal Palace pool, appeared in the Croydon and Sutton editions of the ADVERTISER on 7th August. Philip was a tiny baby when his Dad became Branch Treasurer seventeen years ago and mother, Daphne, is a past Branch Hon. Secretary and DSA Chairman.

 PEOPLE FIRST
Sutton's Project Worker for PEOPLE FIRST, Roger Quemby, was delighted with a recent illustrated article on himself in the local GUARDIAN. PEOPLE FIRST is run by and for people with a learning difficulty to encourage its members to speak up for themselves.

 GREAT LITTLE TRADING
The Great Little Trading Company offers software and equipment ideal for children. Send for the catalogue by phoning 0990 673 009 or writing to GLTC, 124 Walcot Street, Bath, BA1 5BG. Branch Committee member, Paul Everington, may be able to advise on what would suit your child/ren. The GLTC Orderline (0990 673 008) offers to help you choose what is suitable for your computer.

 COMPUTERS
Branch Committee members may be able to help individual Branch members to obtain computers which are no longer required by large organisations. Contact Alan Mayne.

 DISABILITY RIGHTS
The 23rd edition of the Disability Rights Handbook was published in May 1998. It costs ±11 postfree (or ±7 if you're on benefit). It would probably be available in your public reference library.

 TRAINEE ADVOCATES
Advocates are needed by many Local Authorities. Oxted C.A.B. is looking for volunteers who are willing to help people with learning difficulties to make choices and decisions and to ensure they have as many new opportunities as everyone else. Contact Louise Close on 01737 783276.

 QUILT COVER
The Scottish DSA NEWS reports a new cover which could make bedchanging less of a hassle. The EZEE Quilt Cover opens on three sides and is available from MMS Designs for Living, 21 Shepherd Drive, Langstone, Gwent NP6 2LB tel. 01633 411159.

 DOWN'S HEART GROUP
This national charity has a wealth of understanding and expertise. If your baby or child with Down's syndrome has a heart condition, don't hesitate to contact the National Administrator Penny Green, 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA tel. 01525 220379.

 EXERCISE AND DIABETES
The East Surrey Health Authority publication Care Spectrum recommends exercise for people with diabetes and reports projects in Redhill and Epsom.

 DATES TO NOTE
1998

 Saturday 24 October DSA National AGM, Nottingham

 Sunday 1 November Gala Evening, Her Majesty's Theatre (see July Branch Newsletter)

 Saturday 14 November Branch Family Fun Day and Fair, Maidenbower, Crawley

 Saturday 28 November DSA Ball, Chelsea (see "A NIGHT AT THE CASBAH", page 2)

 1999

 Sunday 17 January Branch Committee, Cheam

 Saturday 24 April SWT Branch Information Day and AGM, Purley