| South West Thames Branch of | Down's Syndrome Association |
Dear Parents and Friends,
The
Branch celebrated the formation of the DSA in 1970 with a brief history
of the changes in 
attitude
to Down's syndrome since Dr. Langdon Down identified the condition in 1866.
A superb birthday cake, made by Liz England,
was cut by parent Elizabeth Blackwell after the 30 candles were blown out
by Branch founder 'children' Rebecca Blackwell and Roger Quemby.
CHAIRMEN
The Branch thanks Mark Anderson for being our very active and
enthusiastic Chairman until the AGM in May when he stood down and Paul
Everington took over. The support of Paul and Rashné Everington
on the Branch committee has been invaluable and we welcome Paul as he takes
the lead. Of their three children, the second, Amy (3), has Down's syndrome.
BRANCH HON. TREASURER
Welcome to Stewart Bailey
who agreed at our AGM to join the Branch Committee as the representative
of parents with a child under age one, and a Sussex resident. Stewart has
now become our Branch Hon. Treasurer for which the Committee is most grateful.
BRANCH RAFFLE
Our Branch Secretary, Liz England, has been given a 'special
edition' print of Damon Hill which is to be raffled for the Branch. It
is hoped readers will sell tickets and send in the proceeds in the autumn
and be sure to come to the Draw at the Branch Fun Day and Fair on 4th November
at Maidenbower. Tickets and Fun Day information will be enclosed with your
next Branch Newsletter. For the past four or five years, the expenses of
running Branch open days and creating and despatching 500 Newsletters have
been steadily depleting our funds. Several Committee members are keen to
reverse this undesirable situation and ask that we all give their efforts
our support. Fundraising for the Branch is not the prerogative of Committee
members alone!
BRANCH VIDEO -
GROWING UP WITH DOWN'S SYNDROME
The Branch Committee is delighted to announce that the promised
video has been made and packaging is now being arranged. Main financial
support came from the Millennium Awards for All although thanks are also
due to those members and friends who made donations. After four years of
planning, the dream that the Branch could celebrate with a video 30 years
of achievement in this Millennium year is being realised.
As the time to leave school approaches, parents and their young person with Down's syndrome will be wondering where they can continue their education. The students who take part in the video are happy to show some of the opportunities on offer. Vital information about "Going to College" makes this a valuable asset for all families concerned about the future after school. The next Branch Newsletter will explain how you obtain your copy.
DSA TRUSTEES
A third of the Association's Trustees must stand down in rotation.
They and other members can stand for election each September. Your editor
was re-elected last year on the principle that the DSA should be membership
led. You each have the right to vote, please use it !
DATES FOR YOUR DIARIES
Our Branch is a member of the Scottish Down's Syndrome Association
and receives news, its informative newsletter. If you have reason
to make direct contact, tel. 0131 313 4225, email
info@sdsa.org.uk or www. sdsa.org.uk
Some Scottish Branches have their own websites.
DOWN'S HEART GROUP
The Newsletter of this national charity always contains inspiring
stories and helpful information. The Group was founded especially for families
whose child had both Down's syndrome and a heart condition and membership
is recommended if this describes your child. The national administrator
is Penny Green, 17 Cantilupe Close, Eaton Bray, Dunstable, Beds, LU6 2EA
tel. 01525 220379, email Downs_Heart_Group@msn.com or website: http://www.downs-heart.downsnet.org/
DOWN'S HEART GUIDE
The front cover of the Down's Heart Group Newsletter is an inspiration
to every Brownie and Guide. Rebecca Andrews from Ipswich has gained her
Baden-Powell Award, in itself no mean feat. However, Rebecca has not only
Down's syndrome but is also registered blind, has diabetes, Eisenmenger's
Complex and other medical problems. Her parents write she had to learn
to do everything the same as the other girls and received no dispensation.
Well done indeed!
VENTURE SCOUT PHILIP
Sincerest congratulations to Philip Jones who has achieved the
Queen's Scout Award. He also took part in the parade of Queen's Scouts
at Windsor. Philip's parents joined the DSA 20 years ago, when Philip was
very tiny, and served the Branch as treasurer and secretary before Daphne
became a DSA National Chairman.
CYCLE TRAINING
At one of the few remaining 'mental hospitals' which used to
surround Epsom, a practical project has been set up to train adults with
learning difficulties to cycle safely. Around the country there are adults
with learning difficulties who use a pedal cycle as their means of transport.
It keeps them fit, increases their independence and is fun. St. Ebba's
has extensive grounds with realistic road layouts and road signs and Surrey
Road Safety Officer, Alan Fordham, working with Malcolm Cansdale at St.
Ebba's, is leading the training. For more information telephone Malcolm
01372 203215. Your editor has taught adults to cycle and will be pleased
to advise on teaching a child or adult to balance.
LEARNING TO BALANCE
Childhood is certainly the time for learning to balance on a
pedal cycle (and to swim and try all the other balancing activities such
as canoeing and skating). For adults to master cycling is a big challenge.
Inventor, David Bray, has created a special bicycle which is designed to
lessen the chance that a beginner will fall off. He would be happy to hear
from any adult who wants to learn to balance. Contact through Shirley Quemby
(see Committee list).
ADULTS' CONFERENCE
The first conference for people with Down's syndrome took place
at the Share Holiday Village beside Lough Erne in Northern Ireland in May.
Roger Quemby was fortunate in being invited to attend. There were groups
from England, Wales, Scotland, Northern Ireland and Eire. Serious discussions
were held, interspersed with swimming and other activities, and everyone
who attended is looking forward to the next such event to be held in Scotland.
PEOPLE FIRST
Now that the DSA is 30 years old, having begun life as the Down's
Babies Association in 1970, it follows we have many adult members with
Down's syndrome. The national self-advocacy organisation, People First,
welcomes all with learning difficulties who are over 16. It is a national
charity run and controlled by people with learning difficulties and has
local 'speaking up' groups around the country. It provides support, information,
advice and training to encourage people with learning difficulties to speak
up for their rights and, in addition, campaigns at national level. It also
provides training for professionals who work with people with learning
difficulties to ensure published information is 'accessible' and their
needs are understood. email
general@ peoplefirst.k-web.co.uk
FPLD
The Foundation for People with Learning Disabilities publishes
GOLD nuggets, the newsletter of the Growing Older with Learning
Disabilities Programme. The Spring 2000 edition includes many references
to older people with Down's syndrome and announces a conference: Medical
Issues in Down's Syndrome, taking place on Wednesday 6th September. Contact
020 7290 3934.
GOLD nuggets also recommends two books suitable for carers of an older person with Down's syndrome: Caring for Kathleen: A Sister's Story by Margaret T Fray, ISBN 1 902519 19 1, BILD publications 1999 £15. tel. 01562 850251 http://www.bild.org.uk and Down's Syndrome and Dementia: Practitioner's Guide by Diana Kerr, ISBN 1 86178 017 6 Venture Press (1997) £10.50 + pp. tel. 0121 6223911.
Leaflets offered: Leaving Home, Moving On (for parents of teenagers or adults) tel. 020 7535 7420; Parents with Learning Disabilities tel. 020 7535 7441.
The FPLD is at 20/21 Cornwall Terrace, London NW1 4QL, tel. 020 7535 7400, email mhf@mentalhealth.org.uk or http://www.mentalhealth.org.uk
RARE BREEDS FARM
The Canterbury Oast Trust Ltd. provides both accommodation and
work for adults with learning difficulties in south east Kent. Their South
of England Rare Breeds Centre at Woodchurch, near Ashford, is worth a visit:
pleasant site, good cafeteria, and plenty for the children to enjoy. Nearest
railway station is Ham Street. Tel. 01233 861493.
JUST KIDS
Some of our readers were encouraged to see this publication when
their baby was diagnosed as having Down's syndrome. The first edition was
published by the North East Thames Branch soon after the South East Branch
was divided into four Branches in 1989. North
East Thames have recently published the second edition (following a
request in this Newsletter for suitable photographs). The Branch is purchasing
75 copies which it is hoped members will take to the hospitals where their
baby was born. Liz England will hold the
main stock. Maggie Almrott will have
some in the Branch library.
ELMER
A member whose child is 5 suggests this book by David McKee about
an elephant could be helpful to a child (with or without Down's syndrome)
who feels s/he looks different. This elephant looks different and makes
all the others laugh. He then makes himself look like them and is bored!
A good colourful children's book for a child to read or an adult to read
aloud.
BRANCH LIBRARY
Committee member, Maggie Almrott,
holds a stock of books on behalf of the Branch. These are available for
members to borrow. Please ensure you return any which belong to the Branch
(or pay Maggie for them if you do not do so). Parents who have finished
with helpful books of their own may wish to donate their copy to the Branch
library for the benefit of newer members.
DSA BANNERS
Maggie Almrott also holds
a small stock of strong white banners, 7 ft. 6
in. x 3 ft. with the DSA logo and name. These are available to purchase
or hire (at cost price i.e. £35 including VAT and postage and
packing) by Groups and Branches throughout England, Wales and Northern
Ireland.
TNI
'Targetted nutritional intervention' is an American term describing
specialist dietary supplements available from American and Canadian companies.
That supplied by Nutri-Chem Pharmacy (Canada) is now available in this
country. Contact 28 St. Thomas's Road, Worthing BN14 7JW, tel. 0870 740
7815 (fax 0870 740 7816), email
uksales@nutrichem.com For more information on TNI contact the Down's
Syndrome Research Foundation - below.
DOWN'S SYNDROME RESEARCH FOUNDATION
Peter Elliott, founder of the DSRF to encourage research into
improving the health and achievement of those with Down's syndrome following
contact with suppliers of TNI in North America, may be contacted at 18
Daws Hill Lane, High Wycombe, Bucks, HP11 1PW, tel. 01494 521826. Donations
and subscriptions to support the work of the DSRF are welcome and will
bring the occasional informative newsletter.
RIGHT TO SIGHT
The RNIB offer a video to take the fear out of sight tests for
those who could become anxious when confronted with the darkened room and
other unfamiliar procedures. Tel. Gill Levy 020 7388 1266, email
glevy@rnib.org.uk
HELP! HOW CAN I ... ?
(An occasional series which welcomes
either problems or solutions from readers).
... Cure excessive catarrh
Following a discussion at a Branch Committee meeting (we share information other than the planning of meetings!) the following suggestions are offered:
Glue ear, or secretory otitis media, affects many youngsters with Down's syndrome, probably because the Eustachian tubes are narrow and near horizontal. Many tubes in children with Down's syndrome are narrow. The Eustachian tube connects the middle ear to the throat and fluid can accumulate in it which can become infected, often after a cold. Some members have found gromits (or grommets?) have provided a perfect solution whereas for others' children they have not. As good hearing is vital for children who need all the help possible to learn about the world around them, solving glue ear is critical.
A gromit is a tiny tube inserted into the opening of the eardrum to help drain the fluid and allow air to circulate in the middle ear. Mr. Geoffrey Montague-Smith, at our AGM in May, suggested cranial osteopathy as a practical treatment. An article in STYLE 25 June 2000 recommends cutting down on mucus-forming foods and seeking help from a homoeopathic specialist or health store.
DEAFNESS
The West Sussex newsletter WELLSPRING announces that Defeating Deafness, the UK's national medical research charity for deaf and hearing impaired people, has launched a childhood deafness information pack. This will help parents identify and adapt to their child's hearing loss and may be ordered on 020 7833 1733 or email defeating.deafness@ucl.ac.uk
WOKING LEISURE
Woking Borough Council have sent us a lengthy document describing
a variety of activities suitable for people with disabilities. Woking Leisure
Centre offers Sensation Sensory Suite, Pick'n'Mix Playstore, Rollerdrome,
Sports and Games, Technogym, Activ8 Aerobics, Heatwaves Health Suite and
Woking WurliTzer. There are pools in the Park, too. For further details
or to enquire about specific packages tailored to your needs, contact Jacki
Wikeley on 01483 771122. If Woking is too far away, challenge your local
Leisure Department to see what they offer you!
ACTIVENTURE
Newsletter WELLSPRING reports an Activenture Activity
Fun Day on Sunday 24 September at Hindleap Warren, Wych Cross, Forest Row,
West Sussex. The day is open to all the family and anyone with special
needs of all ages. Details tel. 01273 229408.
FUN DAY AND FAIR III
The Branch Committee hope you are keeping free the date - 4 November
- and will come to Maidenbower for this the third Branch Fun Day and Fair.
More fun activities are being planned, plus a Christmas card stall as well
as many of the firm favourites from previous years. Relatives and friends
welcome. Full details with the Autumn Branch Newsletter.
BRANCH ANNUAL OPEN DAY
A valuable day for parents, whether their child was very new
or into their teens, took place at Christ Church School, Purley, on 6th
May courtesy the Headmaster and Governors. The Branch is indebted to them
and to the creche helpers, caterers and caretaker who all gave their time
and skills for our benefit. Our speakers, too, provided memorable presentations
which will help us as our babies and children with Down's syndrome develop.
Tapes may be available from Alan Mayne (see Committee list).
It is good to know we have not exhausted the School's goodwill. Note in your diary now that next year's open day will take place on Saturday 28th April at the same venue. 'Independence' (or 'letting go safely') will be the main theme.
WEST SUSSEX
The newsletter WELLSPRING continues to provide helpful
snippets of information for children and young people with disabilities
and their parents and carers across West Sussex (and beyond). Young disabled
internet users are invited to click your mouse towards www.thesite.org
for information on thousands of organisations and services.
INTERNET RESEARCH
A student, Nicola Hair, at Loughborough University is researching
what information is needed by patients with Down's syndrome (or their families)
and whether the Internet can meet these needs. For more details, or to
take part: email nic@hla-universal.com
WEBSITES
The Branch website is being kept up-to-date by Ajit Mane and
Paul Everington. Have you looked recently at this (www.downsyndrome.org.uk)
and at the DSA national website (www.downs-syndrome.org.uk) which has been
completely reconstructed?
CLASSROOM SUPPORT
A parent in our Branch area has warned that funding for recommended
hours of support in mainstream education could be cut without parents'
knowledge. If your child relies on such support, it could be advisable
to check from time to time the hours received.
DOWNSIDE SPORTS DAY
Try to visit the annual Downside & Hatchford Sports Day at
Downside Common (near Cobham, Surrey) on Monday 28 August 10 am - 6 pm.
The DSA will have a stand and Liz England and her team will be delighted
to meet you!
BRANCH COMMITTEE (contacts)
All officers and committee members are available to DSA members
seeking help or support.
VICE CHAIRMAN Mrs. Karen Edmonds 020 8330 1597
SECRETARY Mrs. Liz England 01932 344482
TREASURER Mr. Stewart Bailey 01293 881232
NEWSLETTER EDITOR/MINUTES SECRETARY
Mrs. Shirley Quemby 020
8642 3720 (fax 020 8241 3947)
BRANCH MINI-LIBRARY Mrs. Maggie Almrott 01403 257083
COMMITTEE MEMBERS
Mr. Mark Anderson, 020 8661 9400
Mrs. Rashné Everington 01293 889777
Mrs. Yolande Hesse 01252 710529
Mr. Enrique Lopez 01784 434650
Mr. Ajit Mane 020 8979 7485
Mr. Alan Mayne 01483 415874
REGIONAL DEVELOPMENT OFFICER
Miss Rosalind Chislett(answerphone/fax) 01342 826250
NATIONAL OFFICE
020 8682 4001 (fax 020 8682 4012)
155 Mitcham Road, London, SW17 9PG
e-mail info@downs-syndrome.org.uk