Branch
Secretary. Liz has two children, aged 7 and 5, the elder with Down's syndrome,
and becomes the Branch's main point of contact for National Office.
Enclosed is your invitation to the Branch Fun Day and Fair, an expanded and more exciting repeat of last year's happy occasion. There will be time for parents to talk with other parents while the children watch a great show. Come with your family and friends on Saturday 13th November to Maidenbower Community Centre, near Crawley, a mile from Three Bridges railway station and enable your family to share the company of others with a baby or child with Down's syndrome.
Next year our Association will be 30 years old and a short celebration will be included in the Branch annual meeting on Saturday 6th May 2000 at Purley. Meantime, Christmas and the new Millennium celebrations will be taking place. We wish happy times to you all.
Front page colour photograph in her local Guardian is fully deserved for Kitty Gilbert. Yes, she has Down's syndrome but she has earned good grades in all seven of her GCSEs at mainstream Burntwood School in Tooting. Congratulations to Kitty and to the school for giving her this opportunity. Our best wishes for the GNVQ she now plans.
The Everington family would like to help you/your child to draw up your family tree. Seek out their computer and printer at the Family Fun Day and Fair and give them the names of your immediate family. A simple family tree is an excellent start to a child's understanding of who are their close relatives and in which individual families they belong. Whether an only child or one of several, this project is strongly recommended for youngsters with Down's syndrome who, as we all know, learn best when enjoying a visual activity.
BRANCH INFORMATION DAY
Subjects being arranged for the Parent Information Day and annual meeting next May include the literacy hour and the numeracy hour. Put the date, Saturday 6th May at Christ Church School, Purley, 10 - 4. in your new diary and come to meet other families with a youngster with Down's syndrome. Both you and they will find the meeting helpful. Aunts and uncles, grandparents and professionals will be welcome too. Full programme with the next Branch Newsletter. Please make sure you keep up your DSA membership so that you don't miss it.
The Branch is grateful to Mrs. Liz England who has agreed to fill
the void and become our Branch
Secretary. Liz has two children, aged 7 and 5, the elder with Down's syndrome,
and becomes the Branch's main point of contact for National Office.
BRANCH HON. TREASURER
Thank you to Natalie Thorpe who has now taken over as Branch Treasurer
from Jim Cowie. Please send her the funds you raise on the Branch's behalf!
Whilst raising funds is not a requirement of membership, the coffers are
depleted annually with the costs of information days and Newsletters and
all contributions are gratefully received. In the past, parents have run
the London Marathon and the Three Peaks but they have moved out of our
area. Would you like the Branch to create card collecting boxes for your
homes?
Our child's needs are constantly changing and the Branch Newsletter often includes information which will be of use 'soon'. It is hoped each edition is not just read but filed as well so that the useful hints and tips are to hand when you need them. Ajit Mane has placed the last nine on the Internet and is indexing them. Backnumbers (from 1975!) are mostly available from Shirley Quemby.
WEBSITE
Have you visited the Branch site yet? Ajit Mane would be pleased to receive your comments - and information he can include which will be useful to others. www.sw-thames.dsa.downsnet.org/ The National Office site is www.downs-syndrome.org.uk and has links to other relevant organisations.
The Branch Committee still plans to create a video. Advice has been received from Philip Eckstein, DSA Fundraiser, as funding is now the greatest need. Possibilities for our young people as they approach the end of school days is the first topic to be filmed as this will help current members. Contact the Editor, or Ajit Mane (web.swthamesdsa@cwcom.net), to offer help - especially if you have expertise in completing a Lotteries form.
The Branch owns three of these good quality assets. At the Fun Day and Fair on 13 November you will be able to experience one. It is hoped youngsters will talk to it so that you can see how it can help speech and communication. The machines are available for use by members or hire to raise money for the Branch - have you a friend who would like one for their function? Talk to Rosalind Chislett, Alan Mayne or Mark Anderson (see Committee list).
ARE YOU A MEMBER?
National Office provided a bumper label run for the July Branch Newsletter. The DSA's Health Alert campaign against medical discrimination no doubt brought many supportive enquiries to the office. If you were one and wish to join the Association to ensure you continue to receive Branch and National Newsletters, please ask National office for your membership to continue. New parents are entitled to one year free otherwise annual membership is normally £15.
Our enthusiastic Development Officer, Rosalind
Chislett, asks us to encourage our wealthy acquaintances to book a
table and provide advertisements for the programme for the Valentine Ball
on Saturday 12th February 2000. Raffle prizes to the value of £20
or more are wanted, too. The logo for the ball has been designed by an
adult with Down's syndrome. See page 10 in the latest DSA Newsletter for
more information.
SIMON AND HUGH
Many Branch members will remember with affection the Crawford and Hutchinson families, both of whom have moved away. Simon Hutchinson and Hugh Crawford cycled the Kenya Safari Bike Ride last March and raised a huge sum for the Association.
TANDEM RIDE
Congratulations to cyclist Gordon Fox who assisted with the organisation of the Big H ride in July and cycled 'End to End' with a young man with Down's syndrome on a tandem. Land's End to John O'Groats is around 900 miles.
FUNDRAISING
Networker, 'The voice of the Voluntary Sector in Sutton', reports that documents relating to fundraising and government policy are often published first on the internet. It suggests www.charity-commission.gov.uk and www.fundraising.co.uk could be useful.
FOREIGN COINS
Our DSA collecting tins sometimes attract old or foreign coins. The bank will take the out-of-date English coins and put their value into our Branch account. Can any reader suggest how a handful of foreign coins (some possibly out-of-date) can be turned into income for the Branch? Answers to the Editor, please.
LEAVING MONEY
Mencap published in May 1998 a booklet entitled Leaving money by will to people with learning disabilities. Contact them on 0207 454 0454. In additioan to advice on trusts, this asks you to leave money to Mencap but you may prefer to benefit our Association.
Changes in the welfare benefits system are imminent and could seriously affect benefits received by members and adults with Down's syndrome. Particularly, the time limit for asking for a decision to be looked at again will be reduced to one month. An appeal tribunal could take a year but will consider the circumstances at the date of the claim. If circumstances change, it might be advisable to put in another claim while awaiting the appeal. The new Working Families and Disabled Person's Tax Credits could be available to more people than the discontinued Family Credit and Disability Working Allowance.
THE NEXT STEP
This 8 page A4 booklet for those of 16+ suggests answers to such questions as What will I do?, What Benefits am I entitled to? and suggests activities and contacts to help to make good use of spare time. There are sections on Housing, Holidays and Relationships all set out in small paragraphs and the back cover has lists of many useful organisations. Produced by The Family Fund Trust, PO Box 50, York YO1 9ZX who also offer After age 16 - what next?. This book is free to young disabled people and £4 to others.
This charity exists to encourage and enable people with learning difficulties to be in control of decisions concerning their lives. It is undertaking research into supported decision-making. Trainings for care staff are held. To learn more, or to share your views: James Edge, VIA, Oxford House, Derbyshire Street, London E2 6HG, tel. 0207 729 5436, www.demon.co.uk/via/
BEFRIENDING SCHEMES
From time to time we hear of these - their names are fascinating: Connect 2, One to One, Croydon Contacts, frienDS, Community Links. Most are not restricted to adults with Down's syndrome but all need volunteers willing to give a little time to one or more adults with a learning disability to help them to make better use of their leisure time.
ELMBRIDGE SPEAK OUT
Paperchase, the newsletter of Disability Information Service
Surrey, announces this new group being set up by three people with learning
disabilities. It is open to anyone with a learning disability and plans
to meet in Walton-on-Thames monthly for discussions and social events.
Contact James or Christine at 2 Rodney House, The Dolphins, Rodney Road,
Walton-on-Thames, KT12 3LE.
CONTACT IN PADDINGTON
A young man with Down's syndrome aged 23 who lives in Paddington, London W2, would like to meet some new friends. He works as a porter. If any South West Thames Branch member would like to respond to this request please contact Shirley Quemby.
PEN/AUDIO FRIENDS
Contact Rosalind Chislett
if you are over 16, have Down's syndrome, and would like to know more about
this scheme which will be starting shortly.
NCT AND PREGNANCY
Many readers will be familiar with the National Childbirth Trust which provides so much helpful information for childbirth. The NCT has produced an excellent A5 booklet, Pregnancy care and screening tests which explains really clearly the options open to expectant mothers and what the results will mean. NCT, Alexandra House, Oldham Terrace, Acton, London W3 6NH.
TAMBA
The Twins and Multiple Births Association has a Special Needs Group intended to help families where one or more of their multiple children has special needs of varying complexities. Their Co-ordinator has a twin with Down's syndrome and a heart defect: Margot Eastwell tel. 01233 502617.
DOWN'S HEART GROUP
This nationwide charity has advisers and information ready to help any parents whose baby with Down's syndrome has been born with a heart defect. Their video is particularly recommended. National Ofice: 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379 and on the web.
FACE TO FACE
This charity has for some years enabled parents to support parents.
Volunteers are trained and are available to meet and befriend parents with
a child with a newly diagnosed condition or disability. For Surrey and
West Sussex tel. 01737 224439; for London Boroughs contact your local Mencap
or Scope. If you are an experienced parent and a good listener you are
invited to consider becoming a volunteer.
MOSAIC DOWN'S SYNDROME
Not everyone with Down's syndrome has an extra chromosome in every cell. An article in the Down's Heart Group Summer newsletter invites parents of a child with mosaic Down's syndrome to contact them for a letter concerning a proposed study. It is not at present certain whether mosaicism is a genetic or 'mechanical' condition and help with the study would be welcome. Down's Heart Group tel. 01525 220379.
The Scottish Down's Syndrome Association Summer Newsletter describes provision for babies and children at the Yorkhill NHS Trust. Emphasis is on getting to know each child then agreeing a multi-disciplinary programme of activities to encourage communication skills. 'Total Communication' is promoted by use of all forms, fun activities, and by encouraging the baby/child to imitate not just sounds but facial expression and eventually Makaton signs. Other areas please copy!
COMMUNICATING WITH PICTURES
Jane Yos, Secretary of our Worthing DSA Group, recently attended a two day training in the Picture Exchange Communication System. She writes that PECS is a new alternative method of communication developed in America for children who do not communicate by speech. It was originally developed for autistic children. Mrs. Yos found the training most helpful and her son is now progressing with PECS both at home and at school. Ring her if you would like to know more: 01903 772339.
SIGNS AND SONGS
The benefits of signing for anyone for whom speech (or hearing) is difficult cannot be stressed enough. Signing reduces the frustration of not being able to communicate with speech. To those of you whose baby is new, please find out about using signing with speech with your baby - it really will help your child and therefore the rest of the family, too. Some of our parents, who have had a baby after their child with Down's syndrome, are watching to see whether signing will help the younger child to be less frustrated through the 'terrible twos'. Look out for the video of nursery rhymes using Makaton, believed to be available in High Street shops. Nursery rhymes are specially recommended because of their rhythm. Children may gradually learn to repeat them from the end first.
Stephanie Lorenz, expert on Down's syndrome and Support Assistants, will be the guest speaker on Friday 26th November, 9 - 3.30, at Morden, considering inclusion in each phase of education. Details: 0208 640 6067.
NEW SCHOOL
A small school for children with autism is being started at Mytchett (near Frimley, Surrey) by nine families according to Paperchase, the newsletter of Disability Information Service Surrey. It is hoped the Jigsaw school will be fully established by 2005.
PHABSAIL
Many readers will already have come across PHAB (Physically Handicapped Able Bodied) Clubs. If your young person would like help to learn to sail at Shepperton, contact tel. 01372 272665. Volunteers are always welcome too.
TRICYCLE AND ADJUSTABILISERS
The Scottish DSA newsletter reports a tricycle specifically designed and manufactured for children with special needs. Contact Theraplay, 32 Welbeck Road, Darnley Industrial Estate, Glasgow G53 7SD, tel. 0141 876 9177; website www.triad.com. Remember, too, the Adjustabilisers mentioned in Branch Newsletters Nos. 26 and 29: sae to Good Designs, 60 Gwel Eryri, Llandegfan, Menai Bridge, Gwynedd LL59 5RD, tel. 01248 713624.
THE BACK BRAKE
Reading an article on prevention of accidents to children during school holidays brings to mind the fact that many children are unable to operate their bike's back brake. Stopping with the front brake alone is a quick way to lose one's front teeth. Show the rider carefully what each brake does and check frequently that (a) their fingers can reach both brake levers, (b) that both brakes are easy to operate and (c) that they are effective. Bent or rusty cables, crooked or worn (or missing!) brake blocks, seized up mechanism should all be dealt with immediately. Grandads, Club cyclists or your local specialist cycle shop will help. In some areas there are cycle maintenance classes if you feel this is your need.
Mr. Bernard Crocker held his audience spellbound in April as he explained first how he makes small children feel at home in his dental surgery then how the contents of food and drink damage the teeth. There is sugar in tomato sauce, phosphoric acid in Cola drinks. Acids including citric drinks can errode the tooth enamel. Milk or cheese were suggested to de-acidify before brushing with a tooth brush and paste. Using a straw could help. Ensuring regular meal times with no 'grazing' in between lessens the time food is damaging the teeth. The teeth of babies with Down's syndrome may be delayed but nothing can be done about this. Baby teeth will last for many years if no adult teeth follow. In Down's syndrome there is a lower rate of decay but gums can deteriorate. There was much more in the talk and questions. Ask Alan Mayne about hearing the tape recording.
WEARING GLASSES
Many youngsters with Down's syndrome are prescribed with glasses, which can be a frightening experience. Try to choose professionals who are known to be good with children (I actually asked a Mum in the street where her little son had been fitted - Ed). There are now helpful books such as Topsy & Tim have their eyes tested (Jean and Gareth Anderson, Puffin Books), Jonathan and his New Glasses (Tor B. Jetsmar, Optical Information Council) to help prepare the child. There are more than 30 titles in the Topsy & Tim series which could help with many other intimidating situations.
CLOTHES
After articles recently on shoes, how about clothes? Young children need garments easily managed in the toilet to become independent as their more agile peers. As the child learns to dress him/herself you may find it is the last part of the exercise that s/he achieves first e.g. pulling up trousers onto the hips after you helped to steer each foot into its leg hole. Sew on top buttons of shirts with a longer shank as your child has short stubby fingers. Each task mastered is one more boost to your youngster's confidence and one less chore for you. A few shops offer to shorten trousers. A man's jacket is too long but a plain black school blazer has solved that problem. One of our early Newsletter Editors recommended much use of mirrors to encourage her daughter to be proud of her appearance.
A slightly pliable triangular grip fitted to your child's pencil
could help with pencil control. These 
are
available from various sources at various costs. The Early Learning Centre
is one. Finger games and rhymes, finger puppets, encouraging your child
to retrieve a small object from a narrow-topped container, playing a keyboard,
simple jigsaws and playing with large Lego will all help to improve the
dexterity and pincer grip so much needed for progress at home and school.
PARENT CONTACT LISTS
From time to time a form is printed in the Branch Newsletter inviting parents to seek the names of other members in their area. As a result, Parent Contact lists have been created and are up-dated as necessary. If you have recently completed a form, your list is enclosed with this Newsletter. Names have to be removed if parents fail to renew their DSA membership or, of course, if they move away from the Branch area. South West Thames includes West Sussex, Surrey, South West and much of West London. Please let Shirley Quemby know of any alterations or if you would like to be included on the list(s) for your locality.
RUTH AGAIN
Remember Ruth Cromer's interesting story from New South Wales
in the July Branch Newsletter? She ends her
entry on the internet with this verse:
Saturday 16 October DSA National AGM, Manchester Airport
Saturday 13 November Branch Fun Day and Fair (bookings to Alan Mayne, travel help Paul and Rashne Everington)
2000
Sunday 23 January Branch Committee Meeting, Cheam
Sunday 26 March Branch Committee Meeting
Saturday 6 May Branch Open Day and AGM, Purley
3 - 9 June Down's Syndrome Awareness Week