| South West Thames Branch of | Down's Syndrome Association |
Speech and language adviser to the Association for many years, Lesley Walter was presented with a Sally Johnson painting and flowers after the DSA AGM at York. Lesley was present at the first meeting of the first Branch - in 1973 when the South East Branch was created to cover the whole of the south east of England. She had worked with Françoise Brinkworth, daughter of the Association's founder, then brought her skills to Cheam where many of the early Branch meetings were held.She continues as Headmistress of a residential special school where many DSA members' children are pupils.
HEALTH ALERT
Remember to encourage medical students and professionals to visit
the specialist website www.intellectualdisability.info
and consult it yourself on any health problems relating to the person with
Down's in your family.
GLUE EAR
An article by Anthony Mathews in Paediatric Otolaryngology describes
his belief in cranial osteopathy to relieve this common and serious problem.
Not only has he studied for four years but his six year observational research
on 150 children has led him to devise treatments which can be taught to
parents to reduce the amount of travelling to his surgery. Contact him
at 21 Park Road, Herne Bay, Kent CT6 5ST. Anthony Mathews' experience appears
to agree with that of Geoffrey Montague-Smith (Branch Newsletter
No. 43 email: gms@atmanclinic.freeserve.co.uk)
who has addressed our members several times.
DOWN'S HEART GROUP
This national charity has much valuable information for parents whose
child has a heart defect. Contact Penny Green, 17 Cantilupe Close, Eaton
Bray, Dunstable, Beds, LU6 2EA, tel. 01525 220379, www.downsheart.downsnet.org/
G O S H WEBSITES
Great Ormond Street Hospital now has child friendly and teenager friendly
websites: www.goshkids.nhs.uk
and
www.goshteens.nhs.uk
BROADCASTS
These dramas will include actors with Down's syndrome: Messiah 2 (date
unknown); Doctors (21 October). Down's Syndrome Association is a company
limited by guarantee. registered in England number 3310024 Registered office:
155 Mitcham Road, London, SW17 9PG.
BRANCH VIDEO
The Branch video, Growing up with Down's Syndrome ... Going to College
continues to be welcomed by educationists and parents. It was again shown
on big screens at the DSA AGM. If your local secondary school or college
does not yet have a copy, please suggest they do. Cost is only £5.
Send your cheque to National Office but make it payable to DSA S.W. Thames
Branch. Copies will be available at Branch meetings.
BRANCH AFFILIATION
Work continues to agree a suitable constitution which will be presented
to the Branch membership as soon as possible next year. Please raise any
worries or queries with a Branch Committee member. Suggestions for a name
are still welcome.
BIG H
The Big H Bike Ride has been fixed for Sunday 29th June 2003 and is
strongly recommended by Branch members who have supported it in previous
years. Thirty or sixty miles is the distance along pleasant country lanes
through Surrey and Sussex countryside, or offer to marshal.
BALLOON BADGES
The Association has produced lapel pin badges for fundraising. These
will be available at our Speech & Language afternoon on 9 November.
They are sold at a minimum of £1. Members might like to buy some
and sell on to family and friends - for the benefit of the Branch and increased
awareness. Collect balloons of different colours!
STEWART’S RIDE
It is not too late to sponsor our Branch Teasurer, Stewart Bailey,
who will be cycling in Costa Rica 16 - 30 November to raise funds for the
Branch. Two others will be accompanying. Please get your friends and colleagues
to sponsor this great effort to ensure the work of our Branch continues.
It receives none of your subscription to National Office yet runs meetings
and posts out Newsletters. In addition, following the success of Going
to College, our Branch is keen to make another video in the series Growing
up with Down's Syndrome for which large sums will be required.
FUNDS CONGRATULATIONS
Our Branch Chairman's nephew, Daniel Everington, deserves congratulations
and thanks from all of us for raising £950 in the London Marathon.
Superb achievement. Thank you, Daniel.
ADVOCACY
There are many with learning difficulties or disabilities who are unable
to make their preferences or anxieties easily understood. Organisations
such as Advocacy Partners have trained staff/volunteers who will take time
to 'represent their advocacy partner to enable them to make decisions and
change things'. Trainee citizen advocates are always welcome.
SPEAKER AT YORK
Peter Kinsella, the first speaker at the DSA annual meeting on 12 October,
provided much food for thought and recommended that parents begin to think
early about the 14+ transition. Anticipating and planning for change is
a 'permanent state' which begins at birth. Our own dreams and desires will
have changed as we grew up, so will those of our child. Mid-teens is a
terrible time to start making important plans. Child and parent might not
agree at this time. Peter, from Paradigm, warned of unhelpful advice which
might be provided and told us to challenge everything. 'Kind and compassionate'
ideas might come from incompetent professionals or to suit vacancies that
happen to be available. Aim for an ordinary life; have fun with dreams
but seek accurate information. Life is not without risk. People Centred
Planning should ensure the young person chooses who to
live with, where and how. This will not create fairytale lives - people
make mistakes, do things differently - try to work in partnership with
authorities involved. Become familiar with the white paper Valuing People
or at least its summary. Finally, Peter asked parents to join Partnership
Boards in their areas. (An article “Adolescence and how to survive it”
appeared in the
Spring 2002 DSA Journal. Ed.)
PARADIGM
Peter Kinsella is Managing Director of Paradigm, founded 1999, which
has recently published its first Newsletter: imagine a new
way of thinking and doing. The purpose of imagine is to disseminate the
learning from their training and consultancy and to keep readers up to
date with all of the latest news and views around services for people with
learning difficulties. Sharing
learning, information, knowledge and practice is one way to help make
sure the current opportunities are not lost.
Three workshops are being run in London: 'Introduction to Person Centred
Planning' on 13 December, 'Supported Living Train the Trainers' on 21 January
and 18 June. Consultations, free of charge, for people with learning difficulties
and their families, are offered. Apply on peterk@paradigm-uk.org
. Paradigm are at 8 Brandon Street, Birkenhead, CH41 5HN, tel. 0870 010
4933 www.paradigm-uk.org
STRATHCONA
The performance by the Strathcona Theatre Company after the DSA AGM
at York on 12 October was truly memorable. All four actors had learning
difficulties, two with Down's syndrome. Bereavement after the loss of an
actor's father, plus the finding of a lump and the persuasion needed to
encourage this young actress to face a doctor were beautifully depicted.
This professional company has for some years assisted with the training
of future doctors at St. George's Hospital Medical School.
See them and support them if you have the opportunity.
PARENT CONTACTS
Our Branch maintains lists of parents who wish to be put in touch with
other parents in their area. To join this, please send to your Editor:
your name(s) (including how you prefer to be known), address, post code,
telephone number, and the name, sex and date of birth of your child with
Down's syndrome. This service is for members only so please include your
membership number and remember to renew your national membership each year!
Members in touch with each other in a local area can not only share important
health and education information but could perhaps feel occasional or regular
meetings with others would be of benefit.
EDUCATION NOTES
EXTRA 21, the newsletter of the DSA North East Thames Branch, reported
on a talk by Bob Black, DSA Education Officer, and included the following:
One of the biggest worries shared by schools and parents alike is the widening
of the learning gap. Bob's advice is just to accept that the gap is there
and that it will get bigger as the child gets older. This is, he says,
a fact of life; it is nobody's fault and you can't do anything about it,
so just get on with it!
Bob Black likened Learning Support Assistants to (1) velcro'd (won't
let child out of their sight), (2) helicopter (who knows to stand back
but intervenes as soon as the child seems to go off task) or (3) bridge
builder (who is present when required to create a bridge for the child
to be independent).
In the same report, Sandy Alton, specialist advisory teacher to children
with Down's syndrome and author of much of the DSA's invaluable published
advice, reminds parents of the importance of teaching age-appropriate behaviour.
Children with Down's syndrome may not 'pick up' social rules but mixing
with peers will reinforce this teaching. Co-operative learning is recommended,
perhaps in a smaller group or where role models have good behaviour. At
secondary level, using peers to
support the pupil with learning difficulties is recommended for instance
when travelling round the school. A friendship rota or buddy system can
work well. Support or encouragement could enable the less able pupil to
attend lunch time or after school clubs, or even simply read the noticeboard.
Sandy Alton recommended teaching rules, expectations and instructions
explicitly and reinforcing visually. Put a copy of the rules on the wall
and give the child a copy, preferably with signs and pictures. If the child
is 'attention-seeking', deny eye contact and ignore him/her until the behaviour
stops. A happy or sad face badge worn by an assistant will help the child
to understand
what is good. Observe what 'reward' the child achieves by undesirable
behaviour and make sure it is not pleasant. Spend time with the child and
make no special allowances!
HOMEWORK
Improvements unfortunately sometimes bring problems. Whilst it is a
remarkable leap forward that children with Down's syndrome are continuing
their mainstream education in secondary schools, ensuring their homework
is a good and valuable experience is not easy. The DSA booklet Including
Pupils with Down's Syndrome - Secondary will help families and school to
work together so that only manageable amounts of homework are set but what
about encouragement and supervision?
Many children with Down's syndrome prefer their lives to be compartmentalised
- Mum does things to do with home but not school. Over the years, families
with a teenager with Down's syndrome have invited a neighbour, friend,
or interested person to spend time with their teenager after school. This
can be for pocket money, for interest and experience, or for service for
Awards such as the Duke of Edinburgh or in the Scout or Guide Movements.
Youth leaders need service projects for
their teenagers. Don't be shy to ask. It will benefit your invited
helper perhaps more than your own offspring. The helper is not there, of
course to do the homework, simply to encourage and perhaps assist with
concentration and answer questions.
HIGH SCHOOL GIRLS
Your Editor. accompanied by a child or adult with Down's syndrome,
has given several talks to Year 12 students at Nonsuch High School for
Girls in Cheam. Several girls would really like to help a family with a
child with Down's syndrome. They could be present while the young person
is doing homework, perhaps from a mainstream secondary school, or play
with a child
while Mum is busy with other family members. The girls are: Sophie
who lives near Banstead, Amanda in Putney and Lojika in Kingston-upon-Thames.
Contact through Shirley Quemby who knows of several families who have had
similar arrangements in the past, to the benefit of all.
CONFERENCE - PRIMARY
On Thursday 7 November there will be a conference at the Royal National
Hotel, London, aimed at teachers and support staff working in Infant and
Primary schools (contact Bob Black through National Office).
CONFERENCE - SECONDARY
On Friday 15 November there will be a conference at the Curriculum
& Teachers' Centre, Twickenham, aimed at teachers and support staff
working at transition to and inclusion in Secondary schools. Contact Tina
Cruise, London Borough of Richmond-upon-Thames, Regal House, London Road,
Twickenham, TW1 3QB or fax 020 8891 7516, email: t.cruise@richmond.gov.uk
for application forms.
INCLUSION COURSE
Contact a Family announce an inclusion training course for parents/carers
on Wednesdays 6, 13 and 20 November in Lambeth, London SW8. Cost between
£5 and £30. Details: Parents for Inclusion tel. 020 7735 7872
or email: training@parentsforinclusion.org
SPECIAL NEEDS SHOW
Bob Black, DSA Education & Information Officer, will be on a stand
at the Special Needs Show, Islington Business Centre near Islington Green,
from Thursday 31 October to Saturday 2 November. For free tickets tel.
020 7691 9191.
STAMMERING
If your child shows signs of stammering or dysfluency, you are strongly
advised to get in touch with The British Stammering Association, 15 Old
Ford Road, London E2 9PJ, tel. 020 8983 1003 (helpline 0845 603 2001),
email:
mail@stammering.org website:
www.stammering.org More is being
discovered all the time on ways to help youngsters. The BSA newsletter,
Speaking Out is always of interest. A booklet has been co-written by the
DSA and BSA.
VULNERABLE ADULTS
As a member of Sutton Centre for Voluntary Service, the Branch has
received (through your Editor) a 60 page loose leaf document headed Multi-Agency
Procedures and Guidelines for the Protection of Vulnerable Adults. Whilst
most of us are we hope unlikely to need such guidelines, the list of indicators
of possible abuse does cover several pages. As our young people move more
into the outside world, and we meet other adults with learning difficulties,
it could be helpful to know not only
possible signs but procedures to follow to check suspicions or put
things right. Most Local Authorities will have similar documents.
CONTACT A FAMILY
This organisation for families with disabled children offers information
and activities, including fun for accompanied children during school holidays.
The South West London Region covers Merton, Sutton, Croydon, Kingston and
Richmond and is at 181 Haydons Road, London SW19 8TB, tel. 020 8543 9068,
email: swlondon@cafamily.org.uk
website: www.cafamily.org.uk
BEHAVIOUR PROBLEMS
Contact a Family offer a free workshop over three days, on Tuesdays
19, 26 November and 3 December, on Responding to difficult behaviour in
children. Lunch and creche provided at the Beaconsfield Children's Centre,
New Malden, Surrey. Booking essential. Details above.
GRANDPARENTS WORKSHOP
Contact a Family are holding a free one day workshop in Sutton (Surrey)
on Monday 2 December 10 - 2.30 including lunch. Bring photos, share experiences
and find out more about this important role. Booking essential (meal and
creche). Details above. There could be assistance with transport.
NEWBORN BABIES
If you have a newborn baby with Down's syndrome, please know we are
here for you. There are booklets of information in a wide variety of languages
if English is not your first. We look forward to meeting you and your family
soon. When you feel ready, new babies are needed for vital research. If
you would like to help, please inform National Office.
The DSA holds very popular Under 5s conferences in various parts of
the country. Watch your JOURNAL or phone and ask if you wish to attend
one of these.
BLIND CRICKET
The ball is larger than normal, white and filled with ball bearings
so that it is audible. The wicket is suitable for blind or partially sighted.
Full details from UK Blind Cricket on email: bbscricket@aol.com
and http://members@aol.com/bbscricket
For more ideas on sport tel. British Blind Sport on 08700 789000.
WOKING LEISURE CENTRE
Good reports are being received of staff here being especially helpful
to people with any disability. Would the Branch like a fun day, or half
day, there? Tell your Committee! (See Branch newsletter
No. 39 dated July 2000 or our Branch website).
WEBSITE
Down's Syndrome Scotland's News mentions a website called Your Genes
and Your Health which contains a
section on Down's syndrome. www.yourgenesyourhealth.org
DSS's own website is www.dsscotland.org.uk
| Officer's name & contact | Offspring born in |
|---|---|
| CHAIRMAN - Mr. Paul Everington 01293 889777 | daughter 1997 |
| VICE CHAIRMAN - Mrs. Karen Edmonds 020 8330 1597 | son 1994 |
| SECRETARY - Mrs. Liz England 01932 344482 | son 1994 |
| TREASURER - Mr. Stewart Bailey 01293 881232 | daughter 1999 |
| NEWSLETTER EDITOR / MINUTES SECRETARY
Mrs. Shirley Quemby 020 8642 3720 (fax 020 8241 3947) |
son 1971 |
| BRANCH MINI-LIBRARY - Mrs. Maggie Almrott 01403 257083 | daughter 1984 |
| OTHER COMMITTEE MEMBERS | |
| Mr. Mark Anderson, 020 8661 9400
Mrs. Rashné Everington, 01293 889777 Mrs. Helen Long, 020 8337 7638 Mrs. Donna Self, 020 8393 8685 Mrs. Jo Tofts, 020 8337 6715 Mr. Ajit Mane website coordinator 020 8979 7485 |
son 1988
daughter 1997 daughter 2001 son 1997 son 1996 daughter 1981 |
| Volunteer & Development Co-ordinator for DSA in S.E. England
Mrs Mandy Joscelyne (answerphone/fax) 020 7476 9041 |
son 1984 |