South West Thames Branch of the Down's Syndrome Association DSA Logo

Branch Annual General Meeting & Information Day

We hold an Information Day (Open Day) every year to coincide with our AGM in April or May.
These Information Days are packed with useful information. They are well attended and are an excellent opportunity to exchange views with pther attendees and discuss matters with the speakers. The summary of some talks/workshops is given below.
Please suggest topics or speakers that would interest you so that we can make the next Information Day even more more relevant and interesting.
Please email us, or phone any committee member with your ideas.

(Information Day, April 2002) ][ (Information Day, April 2001) ][

(Information Day, May 2000) -(Celebration) ][ (Information Day April 1999)

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Summary of some talks in Information Day, 28 April 2001

Christina Katic - DSA's Adviser on Welfare Benefits

Her talk is available on audio tape. Information and advice on statutary and other benefits available are in the excellent leaflets produced by DSA national office. Please contact them.

Shirley Quemby - Safe Steps to Independence

This talk is also available on audio tape. The key points and messages were:

Being able to cross roads safely is key to independence. Start to make the child aware from early stage, when in a pushchair, and ensure all adult carers give the child consistant message in same words and terms.
Instil respect, not fear of the world around.
Cycling is fun, healthy, with good training is safe. Cycle must be right size for the particular child and well maintained.
Each new skill increases confidence. Try to avoid failure; joke about mistakes, show it is part of learning, avoid criticism. Teaching "visually" is more effective.
Encourage decision making
Everything you explain may be taken literally (at face value) even in adulthood.
Sexuality: Do not wait for questions. Explain to keep the child level with children of roughly same age. Explain bit by bit many times. Get help with teaching.
An informative leaflet "Sexuality & Down's Syndrome" is available from DSA. Please contact them.

Colleges & courses for a school leaver with Learning difficulty

In a very interesting and encouraging workshop led by Del Wilson (Special Needs manager, Carshalton College) we got an overview from him of some of the opportunities currently available and what the parents and youngsters should think about to benefit. The notes here were contributed by some of the parents who attended. These are not meant to be official statements by Carshalton College or Del Wilson.
The youngsters with learning difficulties enter Further Education around the age of 16 years from their schools, although older students e.g. upto 21 years are also sometimes accepted if they can benefit. During the last year at the school (and prior to it) a Transition Plan for each child with special needs is usually prepared involving the school, parents/guardians, the LEA representative and other representatives of appropriate agencies depending on the special needs of the youngster. The input from the youngster is central in this plan. It is useful if the carers help the youngster to find out about the available facilities for Further Education and discuss it. Most schools and colleges encourage the student to attend the chosen college for, say, one day per week during the last school term to become familiar and ease the transition.
Courses & Objectives
Before allocating a course to the student a detailed baseline assessment of each student's current abilities, potentials and aspirations, needs in life is made. Then an Individual Learning Plan is prepared with the objectives of specific skills development ( social, behavioural, academic, practical) and the appropriate course / work is allocated. The courses vary from year to year and place to place but following courses offered in Carshalton in 2000/01 may give an idea of the variety of skill/ability range the colleges try to cover.

"Towards Independence" useful for younger students with lower ability levels to improve life skills for later life and prepare them to access other more challenging courses for work-related skills.
"WorkAbility" Prepares students for independant travel, handling simple transactions with money, workplace environment. etc.
"Work Right" Useful for students with lesser learning difficulties and starting with more skill/ability. Develops greater degree of independence, travel, managing money and working in a job as instructed by a supervisor and performing tasks reliably, confidently and less monitoring by others.
Foundation Training Award Courses lead to a formal award which recognises the student as able to get into vocational or academic courses aimed at gaining specific qualifications, usually vocational, such as NVQ.

The transition from the school atmosphere to college atmosphere is quite marked and requires more support by parents/carers and teachers to the youngster with learning difficulties than their ordinary siblings may need for such transition. Some of the changes which need to be handled properly in cooperation for the youngster to benefit and prosper are:-
Student has individual timetable; No hour bell so be aware of time and go yourself to the correct classroom for your next subject / module. The classroom education is usually 16 to 18 hours a week with likely "free time" for students for other activities in or out of the college.
The student has a "contract to learn" and must take greater responsibility for learning activities and social behaviour. The parent/teacher relationship is also different because the student is, quite rightly, treated more as young adult than as a child. Student has the responsibility to take any letters between college and parents. The teachers do not report to teachers all the daily details of ups/downs but only the vital matters or trends. This communication is less frequent commensurate with developing greater independence for the youngster maturing into adulthood. The student has to learn to communicate more and effectively with college staff for his/her needs both educational and social.
Transport to/from college varies a lot from borough to borough (from none to provision of taxi). The trend is for this help to be cut and a confusion about which government agency should provide/fund such transport. It is advisable for parents to make arrangements for the youngster well before entering the college as the colleges are not funded or responsible for these arrangements.
The courses are usually free for the students as Further Education from which they can benefit and show progress in ability.
There is a growing reluctance for the LEA, FEFC etc. to fund a residential college education a strong case needs to be presented on the demonstrable value of such a course for the young person's development. There is a major change underway in the funding and organisation as FEFC is changed and the funds are to be "regionalised". Implications of it in practice will not be clear until later on in 2001 but some people feel that courses for youngsters with special needs may be less widespread among the various colleges of Further Eduction in London and surrounding areas but more concentrated in fewer colleges in the area with perhaps longer travel time for some students and possible loss or gain of flexibility in curriculum in practical terms.

Links to other information

May 2000 Information Day & Celebration

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We celebrated 30th anniversary of DSA in style on 6 May 2000 at our Information Day with a large cake superbly baked & decorated (photo) by Liz England ( our Branch Hon. Secretary). The celebrations were led, quite appropriately, by Roger Quemby & Rebecca Blackwell, both now elegant & accomplished young adults with Down's Syndrome. Their mothers, Shirley Quemby and (photo)Elisabeth Blackwell, both of them active volunteers since early days of Down's Syndrome Association, joined them. One could look at Roger & Rebecca and the DSA and justifiably say with pride, "You've come a long way, baby !"

( Click on the small pictures to see full size photos) Shirley spoke briefly about the early days and how the Down's Babies Association was founded by Late Rex Brinkworth in 1970 soon after his daughter Francine was born. Rex broke new ground in the struggle to overcome the prevalent attitudes among medical & educational establishment and helped many children with Down's Syndrome to achieve much more than the low expections generally held. From a modest start in Birmingham this movement then evolved. It was reflected in the changes in name over the quarter century : Down's Babies , Down's Childrens Association and finally into Down's Syndrome Association which is now a nationwide organisation with several branches and local groups run by volunteers. The good work continues and we look forward to the next milestone and new achievements along the way.

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Information Day, May 2000

Opportunities for adults

Sean McKibbben of Sutton MENCAP has a wide experience of the needs of adults with learning disabilities and the variety of opportunities open to them. He gave an overview and then led a workshop which answered many answer questions.

Numeracy and Literacy -those special hours

Jean Malsbury spoke about the literacy hour in mainstream schools with particular regard to children with special needs. The numeracy hour was also covered.

The Cranial Approach in the treatment of Down's Syndrome

> Geoffrey Montague-Smith described the underlying principles of cranial osteopathy & the treatments involving gentle manipulation of the skull and how it is thought to benefit children with Down's Syndrome, particularly in relation to glue ear and catarrh, poor skin tone and quality, toungue shape, dentition, hearing, height and posture.
(For contact information: atmanclinic.co.uk )

Making a Will

Rose Phelps spoke about special issues when making a Will leaving money to a family which includes a child or adult with Down's Syndrome and discussed some of the considerations which should influence making a Will. She will gave general advice on discretionary trusts, means tested help and inheritance tax.

Branch Information Day 1999

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Committee member, Enrique Lopez, contributes this report of the talk by Dr. Olwen Wilson at our Branch general meeting & Information Day in April 1999. Other talks' summary;

BEHAVIOUR ISSUES

A quick poll showed parents of new-born babies to post-school teenagers were present. A frequent source of behavioural problems is poor communication. For children with Down syndrome use of Makaton can help because it bridges the gap created by verbal difficulties and acts as a confidence builder. Makaton is particularly good for children with Down syndrome because the visual channels of communication appear to be so much more effective. Widespread use of Makaton has been sufficient to dispel fears that it might delay the production of language.

A second preventive measure is routine. Routine builds expectation and so breaks barriers. Bed time is a good example (and one for which our own family appears not to be doing very well, I must say!). Tea, play, bath, story and bed, and things will have flowed relatively easily. Break the routine by allowing to go downstairs to have a play after the bath... and the scene will be set for a temper tantrum.

Dr. Wilson explained how to understand and manage problems by the ABC model: Analyse Antecedent, Behaviour and Consequence. Her analogy was a fire. A is the spark, B is obviously the (inappropriate) behaviour, C the bucket of fluid which we use to put the fire out. Often it is not until studying the outcome of our response, the consequence, that we realise whether the management of the problem is appropriate - we could be using a bucket of something which exacerbates the fire. It is sometimes a matter of trial and error (action and observation of outcome) to find the right extinguishing substance.

Dr. Wilson highlighted the importance of the ABC model of analysis in happy situations - be on the look out for antecedents of positive behaviour to help identify ways to make such "good deeds" more frequent.

And after the theory, it became the parents' turn to bring up "case studies" such as the young girl who has run off twice inside the school when the class is going to assembly. The situation was typical of what Dr. Wilson called "that's life". A: the antecedents are often beyond our control, assembly should not be avoided even if someone doesn't like it. Prevention of B, rather than avoidance of A, seemed the only solution. B could be made unlikely by, for example, making the girl leader of the line, or to walk in a pair with a good mate. It might also be helped by preventing a "noisy assembly" feeling, using auditory desensitisation therapy. Finally, on the C side, avoid any reward for B. Giving the little star a big hug when finally finding her would probably have a "petrol" effect. If it happened again, she ought rather to be taken unceremoniously back to assembly with the rest.

The rest of the cases, and the number of people who tried to talk to Dr. Wilson afterwards spoke for the degree of interest evoked. Still there were topics which couldn't be covered at all, like what one could call "involuntary" behavioural issues, habits. Or a feature which appears to be quite common: unusually strong will (you could call it "stubbornness"). Clearly there is ample material for a future talk."

Dr. Wilson mentioned the following book: Behaviour Problems in Young Children by Jo Douglas, Routledge 1989, reprinted 1995. Children under about six months cannot anticipate their parents' behaviour. However, after this, they begin to test and find out how to 'control' Mum's behaviour. Dr. Wilson suggested that a bribe was negative but a reward provided the encouragement for the child to continue with the behaviour which was rewarded.

1999 Information Day: More talks, in brief

"DENTISTRY" by Bernard Crocker

This talk, by an experienced dentist, offers a fascinating insight into the particular dental issues faced by people with Down's Syndrome. During the presentation Bernard explains how the teeth develop and ways in which parents can minimise potential issues.

"BEHAVIOURAL ISSUES" by Dr. Olwen Wilson

The speaker here combines a wealth of experience and a warm understanding of children's development and needs. By using examples of situations faced by the delegates at the meeting, Dr Wilson not only covers the theories behind children's behavioural issues, but addresses many "real-life" situations.

"HOMEOPATHY" by Sue Brooks

In this interesting talk Sue Brooks, a former Director of the Down's Syndrome Association, presents her findings from a study of the use of Homeopathic remedies in people with Down's Syndrome. A good introduction for those who are interested in alternative therapies.

AUDIO RESOURCES

Each year the S.W. Thames Branch holds a Branch Information Day, which attracts a large number of our members. Some of our members and other interested people away from our area are unable to attend and some attendees like to the information for their friends or themselves. we had offered cassette tapes featuring the key note speakers at these events.
Please contact our Hon.Branch Secretary by phone or email with your enquiries about the tapes.

Tape cassettes of the talks in our
28 April 2001 Information Day and May 2000 Information Day

All the tapes ordered so far have been dispatched and they are not in stock however if there are more people with interest in these tapes we will try our best for new copies to be made & sent. If you are interested please email us giving your name, address, phone or email contact.

Tapes of talks from April 1999 Information Day are no longer readily available but contact us if you have a special interest.